Hello all,
Mike and I were directed to go to the hospital after my water broke on Tuesday night about 11:00 pm. I finally delivered a beautiful baby girl at 7:58 pm on Wednesday, October 10th. She weighed in at a whopping 8' 11" and is 20.75 inches long with a full head of dark hair.
Please be in prayer for her and us. She has been taken away this morning to a Children's Hospital to undergo some tests due to some complications after birth. She experienced some seizures and they want to take every precaution to make sure things are OK.
Have a great day and thank you all for your prayers and support,
Dawn
October 12, 2007 - Emily Rose
Hello friends,
The outpouring of love and support has been overwhelming! Thank you all for your prayers and concern. I realized that in my email, I never mentioned my baby's name. I'm sorry. In the original email, it was in the subject line, but that email was rejected because I tried to send it to too many people. I copied and pasted the message, but not the subject line.
If you haven't figured it out by now...the baby's name is Emily Rose.
Baby Emily is in the NICU and will remain there for a week or more. She has been having seizures and the doctors are trying to figure out the cause and also the proper medication to stop them. It is believed that it was the trauma of birth that caused the problem, but this has yet to be determined. They ran a CAT scan on her yesterday and an EEG to see what they could find. We are still waiting for some results and they are continuing to do more and more tests. The most conclusive test will be an MRI which they have to wait a few days to do. She stops breathing when she has a seizure and is on a ventilator, she will have to be off the ventilator before going into the MRI.
It is a waiting game and that is all the information that I have right now. We trust that God is in control and will not give us more than we can handle. We are ready to accept HIS will, whatever it may be.
I will continue to give you updates as they come in.
Thank you for everything!!!
Mike and Dawn and Emily
The outpouring of love and support has been overwhelming! Thank you all for your prayers and concern. I realized that in my email, I never mentioned my baby's name. I'm sorry. In the original email, it was in the subject line, but that email was rejected because I tried to send it to too many people. I copied and pasted the message, but not the subject line.
If you haven't figured it out by now...the baby's name is Emily Rose.
Baby Emily is in the NICU and will remain there for a week or more. She has been having seizures and the doctors are trying to figure out the cause and also the proper medication to stop them. It is believed that it was the trauma of birth that caused the problem, but this has yet to be determined. They ran a CAT scan on her yesterday and an EEG to see what they could find. We are still waiting for some results and they are continuing to do more and more tests. The most conclusive test will be an MRI which they have to wait a few days to do. She stops breathing when she has a seizure and is on a ventilator, she will have to be off the ventilator before going into the MRI.
It is a waiting game and that is all the information that I have right now. We trust that God is in control and will not give us more than we can handle. We are ready to accept HIS will, whatever it may be.
I will continue to give you updates as they come in.
Thank you for everything!!!
Mike and Dawn and Emily
October 13, 2007 - The update on Emily
Hello y'all,
We just got word that Emily is off the respirator and breathing on her own. If she has another seizure, she may have to go back on it, but the seizures seemed to have stopped for now. The progress is slow moving, but all signs are looking good.
It is still too early to determine if and what brain damage there is. They will be performing another EEG (measures brain wave activity) either today or tomorrow. The one test that will give them the best information is an MRI. Because of how the brain develops in the first week of life, an early MRI would be inconclusive; therefore, the doctors are going to wait until she is 5-7 days old before performing the MRI.
God is good and we are ready to accept whatever the outcome. We are preparing for the worst and hoping for the best. Only time will tell. It would be nice to be able to hold her, though.
As you can imagine, Dawn is having a hard time with this. Her body is VERY sore and she is recovering slowly. She desires to hold and nurse her baby, but Emily can't move right now because of all the machines attached to her. Emotionally, this is a very draining experience for her...and me.
Please continue to pray that we have the strength needed to endure whatever God brings our way. We know that He is in control of everything and He will only give us what we can handle. Dawn is finding out that God thinks she is pretty strong; which I knew all along. If we find that Emily has permanent brain damage, we will consider ourselves blessed that God sees us worthy of the task of raising her!
Giving HIM all the glory,
Mike
PS If you are reading this email and can't understand how we can praise God through this trial and would like a further explanation, feel free to ask me to share how God has worked in my life and brought me into a relationship with Him through His Son, Jesus Christ. I believe this is the main reason for this trial.
We just got word that Emily is off the respirator and breathing on her own. If she has another seizure, she may have to go back on it, but the seizures seemed to have stopped for now. The progress is slow moving, but all signs are looking good.
It is still too early to determine if and what brain damage there is. They will be performing another EEG (measures brain wave activity) either today or tomorrow. The one test that will give them the best information is an MRI. Because of how the brain develops in the first week of life, an early MRI would be inconclusive; therefore, the doctors are going to wait until she is 5-7 days old before performing the MRI.
God is good and we are ready to accept whatever the outcome. We are preparing for the worst and hoping for the best. Only time will tell. It would be nice to be able to hold her, though.
As you can imagine, Dawn is having a hard time with this. Her body is VERY sore and she is recovering slowly. She desires to hold and nurse her baby, but Emily can't move right now because of all the machines attached to her. Emotionally, this is a very draining experience for her...and me.
Please continue to pray that we have the strength needed to endure whatever God brings our way. We know that He is in control of everything and He will only give us what we can handle. Dawn is finding out that God thinks she is pretty strong; which I knew all along. If we find that Emily has permanent brain damage, we will consider ourselves blessed that God sees us worthy of the task of raising her!
Giving HIM all the glory,
Mike
PS If you are reading this email and can't understand how we can praise God through this trial and would like a further explanation, feel free to ask me to share how God has worked in my life and brought me into a relationship with Him through His Son, Jesus Christ. I believe this is the main reason for this trial.
October 14, 2007 - Today's Update
Hello y'all,
Today is a glorious day. Not because there is any new development, but because it is the day the Lord has made. I decided to leave Dawn for a little while and go to church. We are going through the book of Mark at Bullitt Lick and today we were on Mark 10:13-27. Most of us don't have this verse memorized, so here are some key verses.
13 And they were bringing children to Him so that He might touch them; but the disciples rebuked them. 14 But when Jesus saw this, He was indignant and said to them, "Permit the children to come to Me; do not hinder them; for the kingdom of God belongs to such as these. 15 "Truly I say to you, whoever does not receive the kingdom of God like a child will not enter it at all." 16 And He took them in His arms and began blessing them, laying His hands on them.
Mark 10:13-16 (NASB)
Emily is dependant on the doctors and nurses for everything. If she was in our care, the case would be the same. We would be responsible for providing everything she needs to survive. We would feed her and clothe her and change her diaper. This is how God wants us to be with HIM. He wants us to depend on HIM for everything. Every breathe we take is a gift from HIM and we need to acknowledge that. Every decision we make, we should not think about how it affects us, but how it reflects HIM.
This is how I am trying to live my life. It is not easy because when He wants you to trust Him, He doesn't let you in on what He is doing until you can look back on the event and see His hand guiding every step. As an example, I graduated from seminary in May. It was my hope and prayer that I would have a new job and be settled in a new home in time for the baby's arrival. He had other plans. Looking back on it now, we are right near one of the best Children's Hospitals around, and Dawn is being taken care of by doctors that she knows and trusts. Our church family has been there every step of the way providing support and prayers and right now there is no better place for us to be than right here...we are where HE wants us to be.
All of this is to say that we need to put our trust in God alone! He knows what He is doing and where we need to be at every moment of our lives. Making a decision to follow Him with ALL of my heart has been one of the hardest things of my life, but one of the most rewarding. I have gone places I never would have thought (like Kentucky) and look forward to where He will take us next.
I am truly blessed and I just wanted to share this message with you.
On a separate note...I got to hold Emily in my arms today...it was a good day! Everything is the same for now as far as her progress. She is breathing on her own and she is still being fed through tubes and on medication to control the seizures. This will most likely continue for some time. Tomorrow she is going for an EEG and an MRI. These tests will give the doctors the information they need to make an assessment of what to do next. Hopefully, we will be speaking to the Neurologist tomorrow and getting some answers. If not tomorrow, definitely Tuesday.
So, the next time you hear from me we should know a little more than we do right now. I will write back as soon as we hear from the doctor and fill you all in on what is going on here.
Thank you all for the prayers and support! Let me assure you that your prayers are being answered because she looks great and Dawn and I are doing great. As I mentioned before, even if there is permanent damage, we are still blessed to have such a beautiful miracle in our lives!
May God bless you all as He has blessed us!!
Mike
Eph 2:4-7
Today is a glorious day. Not because there is any new development, but because it is the day the Lord has made. I decided to leave Dawn for a little while and go to church. We are going through the book of Mark at Bullitt Lick and today we were on Mark 10:13-27. Most of us don't have this verse memorized, so here are some key verses.
13 And they were bringing children to Him so that He might touch them; but the disciples rebuked them. 14 But when Jesus saw this, He was indignant and said to them, "Permit the children to come to Me; do not hinder them; for the kingdom of God belongs to such as these. 15 "Truly I say to you, whoever does not receive the kingdom of God like a child will not enter it at all." 16 And He took them in His arms and began blessing them, laying His hands on them.
Mark 10:13-16 (NASB)
Emily is dependant on the doctors and nurses for everything. If she was in our care, the case would be the same. We would be responsible for providing everything she needs to survive. We would feed her and clothe her and change her diaper. This is how God wants us to be with HIM. He wants us to depend on HIM for everything. Every breathe we take is a gift from HIM and we need to acknowledge that. Every decision we make, we should not think about how it affects us, but how it reflects HIM.
This is how I am trying to live my life. It is not easy because when He wants you to trust Him, He doesn't let you in on what He is doing until you can look back on the event and see His hand guiding every step. As an example, I graduated from seminary in May. It was my hope and prayer that I would have a new job and be settled in a new home in time for the baby's arrival. He had other plans. Looking back on it now, we are right near one of the best Children's Hospitals around, and Dawn is being taken care of by doctors that she knows and trusts. Our church family has been there every step of the way providing support and prayers and right now there is no better place for us to be than right here...we are where HE wants us to be.
All of this is to say that we need to put our trust in God alone! He knows what He is doing and where we need to be at every moment of our lives. Making a decision to follow Him with ALL of my heart has been one of the hardest things of my life, but one of the most rewarding. I have gone places I never would have thought (like Kentucky) and look forward to where He will take us next.
I am truly blessed and I just wanted to share this message with you.
On a separate note...I got to hold Emily in my arms today...it was a good day! Everything is the same for now as far as her progress. She is breathing on her own and she is still being fed through tubes and on medication to control the seizures. This will most likely continue for some time. Tomorrow she is going for an EEG and an MRI. These tests will give the doctors the information they need to make an assessment of what to do next. Hopefully, we will be speaking to the Neurologist tomorrow and getting some answers. If not tomorrow, definitely Tuesday.
So, the next time you hear from me we should know a little more than we do right now. I will write back as soon as we hear from the doctor and fill you all in on what is going on here.
Thank you all for the prayers and support! Let me assure you that your prayers are being answered because she looks great and Dawn and I are doing great. As I mentioned before, even if there is permanent damage, we are still blessed to have such a beautiful miracle in our lives!
May God bless you all as He has blessed us!!
Mike
Eph 2:4-7
October 15, 2007 - Today's progress
Hello all,
Today was a good day! I got to wash Emily's hair and change her diaper! It was only wet, there was no poop and I was pretty excited about that. After she got her hair washed, she woke up. We have not really seen her with her eyes open, but tonight she was wide awake and looking around. After her bath, the nurse put her in a dress. We got a picture and it will be attached.
Today she had her MRI and EEG. Sometime tonight they are also going to give her a spinal tap. Tomorrow, hopefully, we will get to sit down with the doctor and discuss what happened and where we go from here. She seems to be doing better as time goes on, but there is still so much uncertainty.
I hope to have more answers tomorrow, so continue to pray that the doctors make the correct diagnosis and course of treatment. Know that we appreciate all your emails, prayers and support and God is on our side! She is doing better every day and we are just excited to be able to spend some quality time with her.
We love you all,
Mike
Eph 2:4-7
Today was a good day! I got to wash Emily's hair and change her diaper! It was only wet, there was no poop and I was pretty excited about that. After she got her hair washed, she woke up. We have not really seen her with her eyes open, but tonight she was wide awake and looking around. After her bath, the nurse put her in a dress. We got a picture and it will be attached.
Today she had her MRI and EEG. Sometime tonight they are also going to give her a spinal tap. Tomorrow, hopefully, we will get to sit down with the doctor and discuss what happened and where we go from here. She seems to be doing better as time goes on, but there is still so much uncertainty.
I hope to have more answers tomorrow, so continue to pray that the doctors make the correct diagnosis and course of treatment. Know that we appreciate all your emails, prayers and support and God is on our side! She is doing better every day and we are just excited to be able to spend some quality time with her.
We love you all,
Mike
Eph 2:4-7
October 16, 2007 - The News!!
Hello y'all,
I would like to tell you all we greatly appreciate all the emails, prayers and love that have been sent our way over the past week. To say the least it has been physically and emotionally exhausting. Our God is a big God and has us in the palm of His hand. We know He is not only watching over us, but strengthening us with every breathe.
As we were waiting for the doctors to come in and give us the news, we had some time to play with Emily. One of the nurses was giving her her medications and she wasn't too happy about it. She began to cry! This is the first time that she has done this since she was born. We saw this as a great thing and never thought we would be so happy to hear a baby cry.
The results from the tests were as expected. She has brain damage (cerebral palsy) and it could be pretty bad. It is the result of a loss of oxygen to the brain while in the womb. The brain takes the oxygen it gets and puts it in the areas where it is needed most. This includes all the major functions the body does, like breathing and keeping the heart beating. In order to do this, it has to deprive the other parts of the brain of oxygen. These are the parts that handle motor functions and learning. So, the worst case scenario, she could be permanently debilitated, the best case scenario, she will be a slow starter, but have normal functions.
As I mentioned, our God is a BIG God and has all things under His control. If He chooses to heal her, He will do it and we will give Him the glory and honor He deserves. If He chooses to make her totally dependant on her parents for everything from eating to going to the bathroom, we are ready to accept that and we will also give HIM ALL THE GLORY. He has a perfect plan for our lives, and as I mentioned in my last emails, we are blessed because He counted us worthy to be blessed with a child that is dependant on us as we are to be dependant on Him.
We covet your prayers and we can assure you that God hears them. There have been so many things that she has done already that show us she is a fighter and will prevail. Even though we have a great attitude and we have total faith is an all powerful God, it is still hard on us emotionally and physically, so continue to pray that He strengthens us and guides us through each day.
The biggest struggles are ahead of us, but we will take each day as it comes. We don't know what the future brings, but we do know that as long as we remain faithful, He will provide all our needs according to His riches in Glory!
Emily will remain in the NICU for at least two more weeks, if not much longer. She does not have a gag reflex which means that she can't swallow. She is currently being fed through a tube and this will continue until either she develops this skill or there is a feeding tube permanently installed. She will have several therapists (Speech and physical) to help her overcome the obstacles that face her. She is also bathed in prayer and the love of friends and family.
As you pray today, and as you hold your own children with a greater thankfulness for their health, know that we are in good hands and God won't give us anything that we can't handle. We are empowered by the Holy Spirit that fills us because we have accepted Jesus Christ as our Lord and Savior and have given every ounce of our hearts to Him to hold onto and to take care of. Ever since we left RI to come to Kentucky, it has been our little saying, "Wherever He leads, we'll go." I must admit that this is a road that I didn't know existed, but we are willing to follow Him down it all the same.
Today they had to shave some of Emily's hair to put an IV in her head, so I won't be sending any pictures with this email. Instead, I am attaching the words of a new song by Casting Crowns. The song is on Christian Radio. I recommend everyone reading this to get this CD. The name of the song is "Praise You in This Storm." Enjoy it! The words don't do the song justice, but when you read the words, you will understand the beauty of what is being said.
May God watch over you all as you continue to pray and bless Dawn and I with your love and friendship!
Glorifying HIM!!!
Mike
Praise You In This Storm
I was sure by now
God you would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining
As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as You mercy falls
I raise my hands and praise the God who gives
And takes away
I’ll praise You in this storm
And I will life my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You
As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
I would like to tell you all we greatly appreciate all the emails, prayers and love that have been sent our way over the past week. To say the least it has been physically and emotionally exhausting. Our God is a big God and has us in the palm of His hand. We know He is not only watching over us, but strengthening us with every breathe.
As we were waiting for the doctors to come in and give us the news, we had some time to play with Emily. One of the nurses was giving her her medications and she wasn't too happy about it. She began to cry! This is the first time that she has done this since she was born. We saw this as a great thing and never thought we would be so happy to hear a baby cry.
The results from the tests were as expected. She has brain damage (cerebral palsy) and it could be pretty bad. It is the result of a loss of oxygen to the brain while in the womb. The brain takes the oxygen it gets and puts it in the areas where it is needed most. This includes all the major functions the body does, like breathing and keeping the heart beating. In order to do this, it has to deprive the other parts of the brain of oxygen. These are the parts that handle motor functions and learning. So, the worst case scenario, she could be permanently debilitated, the best case scenario, she will be a slow starter, but have normal functions.
As I mentioned, our God is a BIG God and has all things under His control. If He chooses to heal her, He will do it and we will give Him the glory and honor He deserves. If He chooses to make her totally dependant on her parents for everything from eating to going to the bathroom, we are ready to accept that and we will also give HIM ALL THE GLORY. He has a perfect plan for our lives, and as I mentioned in my last emails, we are blessed because He counted us worthy to be blessed with a child that is dependant on us as we are to be dependant on Him.
We covet your prayers and we can assure you that God hears them. There have been so many things that she has done already that show us she is a fighter and will prevail. Even though we have a great attitude and we have total faith is an all powerful God, it is still hard on us emotionally and physically, so continue to pray that He strengthens us and guides us through each day.
The biggest struggles are ahead of us, but we will take each day as it comes. We don't know what the future brings, but we do know that as long as we remain faithful, He will provide all our needs according to His riches in Glory!
Emily will remain in the NICU for at least two more weeks, if not much longer. She does not have a gag reflex which means that she can't swallow. She is currently being fed through a tube and this will continue until either she develops this skill or there is a feeding tube permanently installed. She will have several therapists (Speech and physical) to help her overcome the obstacles that face her. She is also bathed in prayer and the love of friends and family.
As you pray today, and as you hold your own children with a greater thankfulness for their health, know that we are in good hands and God won't give us anything that we can't handle. We are empowered by the Holy Spirit that fills us because we have accepted Jesus Christ as our Lord and Savior and have given every ounce of our hearts to Him to hold onto and to take care of. Ever since we left RI to come to Kentucky, it has been our little saying, "Wherever He leads, we'll go." I must admit that this is a road that I didn't know existed, but we are willing to follow Him down it all the same.
Today they had to shave some of Emily's hair to put an IV in her head, so I won't be sending any pictures with this email. Instead, I am attaching the words of a new song by Casting Crowns. The song is on Christian Radio. I recommend everyone reading this to get this CD. The name of the song is "Praise You in This Storm." Enjoy it! The words don't do the song justice, but when you read the words, you will understand the beauty of what is being said.
May God watch over you all as you continue to pray and bless Dawn and I with your love and friendship!
Glorifying HIM!!!
Mike
Praise You In This Storm
I was sure by now
God you would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining
As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as You mercy falls
I raise my hands and praise the God who gives
And takes away
I’ll praise You in this storm
And I will life my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You
As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
October 22, 2007 - Update on Emily
Hello all,
This is Dawn, not Mike. I have received several emails saying "we hear from Mike, but how are YOU doing?” So I thought it would be a good idea for me to send the update this time around.
First, I am doing well. My recovery is moving along smoothly. I certainly did not plan to be out and about as much as I have been. The biggest challenge has been taking the time to rest and do what I need to do to recover while running back and forth to the hospital to spend time with Emily. That has been a tough balance at times. I want to spend as much time as possible with Emily, but taking care of me is the best gift that I can give her. So please pray for me as I try to find the right balance.
Second, Emily is doing great! She has been such a blessing to us – I cannot even begin to describe it to you. We know that she will have challenges ahead of her, but she has shown us that she is a fighter and we are so thankful. We have not sent an update in about a week, so bear with me while I brag on my little girl for a bit...
She is absolutely adorable (in my completely unbiased opinion)! Each day she does something new. It is SO amazing to watch her. We count it a privilege to be parents to such an amazing little girl. I know in Mike’s last email, he mentioned that she cried for the first time. Well, she has really gotten the hang of crying & does it every single day. She likes to let us know when she is not happy! And that is wonderful. Twice this week, Mike and I were able to give her a sponge bath. And both times she cried and screamed as if we were beating her with sticks. She gets bright red, scrunches her entire face & just screams. It is wonderful to hear her expressing herself (maybe in a few months we may not think the crying is so great, but for now, we are thrilled).
This week she began working with a speech therapist. The therapist works with her on her sucking, swallowing and her gag reflex. The first day she did this, Emily cried for an hour after the therapist left – apparently she does not like to be gagged repeatedly (who would?). But each day has gotten better. She has started to like her pacifier and actually is soothed by sucking on it (at times). Tomorrow she will have a swallow study done. The therapist will give her liquids of varying consistencies and then x-ray her to see where they go (into her lungs or into her esophagus). This is a very important study. If it goes well, she can move to bottle feedings and eventually to nursing. This means she can have her feeding tube removed. Speaking of feedings, each day they have increased the amount she eats. She is currently eating 57 cc’s every 3 hours. By the time we take her home, she is going to be a porker! At her last weigh in that we witnessed she was 9 lbs. 8 oz!
Yesterday and today, Emily made some great progress. Yesterday, she was moved to a crib rather than the bed with a warmer – so she is able to hold her own body temperature now. And she also went off her oxygen. She has given the nurses a couple of scares where her oxygen levels dropped low, but then she brings them back up again. This too, will get better with time. And today, she was taken off one of her seizure medications - the one that makes her really sleepy. So as this gets out of her system, we will be able to see more and more of her personality (she seems to be a feisty one, so that should be interesting!). And the doctor told me that she will be moving tonight to an intermediate section of the NICU – as the doctor said “this is one step closer to the door”. So Mike and I are hopeful that she will get to come home soon.
The nurses allow us to do more and more which has been wonderful. We have been able to change diapers, bathe her and take her temperature and a few other things. It makes us feel like we are doing something to care for our daughter. I cannot begin to describe to you what a blessing Emily has been to us. She amazes us every single day. This experience has been amazing. No, it isn’t the way we expected things to go, but it is exactly the way that God had planned. I have clung to Psalm 139 lately:
13For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Emily is perfect in God’s eyes. She is exactly the way that God wants her to be. She was knit together in my womb by God Himself. He knows exactly who she will be and how many days she will have on this earth. And I am thankful that He has counted us worthy of being her parents. We do ask that you continue to pray for her as she grows. And pray that we will be the parents that she needs us to be – that God intended us to be. We have received countless emails from people who are praying for us & I cannot tell you what it means to us. There is incredible power in prayer!
Thank you for the overwhelming love and support that we have received from many of you. It has sustained us in those times when we think we can't go on. And yes we do have those times, but God is faithful. It is only through His strength that we get through each day. We could NOT do it on our own. We trust that He will be with us every step of the way and we take great comfort in that.
In HIS strength,
Dawn
This is Dawn, not Mike. I have received several emails saying "we hear from Mike, but how are YOU doing?” So I thought it would be a good idea for me to send the update this time around.
First, I am doing well. My recovery is moving along smoothly. I certainly did not plan to be out and about as much as I have been. The biggest challenge has been taking the time to rest and do what I need to do to recover while running back and forth to the hospital to spend time with Emily. That has been a tough balance at times. I want to spend as much time as possible with Emily, but taking care of me is the best gift that I can give her. So please pray for me as I try to find the right balance.
Second, Emily is doing great! She has been such a blessing to us – I cannot even begin to describe it to you. We know that she will have challenges ahead of her, but she has shown us that she is a fighter and we are so thankful. We have not sent an update in about a week, so bear with me while I brag on my little girl for a bit...
She is absolutely adorable (in my completely unbiased opinion)! Each day she does something new. It is SO amazing to watch her. We count it a privilege to be parents to such an amazing little girl. I know in Mike’s last email, he mentioned that she cried for the first time. Well, she has really gotten the hang of crying & does it every single day. She likes to let us know when she is not happy! And that is wonderful. Twice this week, Mike and I were able to give her a sponge bath. And both times she cried and screamed as if we were beating her with sticks. She gets bright red, scrunches her entire face & just screams. It is wonderful to hear her expressing herself (maybe in a few months we may not think the crying is so great, but for now, we are thrilled).
This week she began working with a speech therapist. The therapist works with her on her sucking, swallowing and her gag reflex. The first day she did this, Emily cried for an hour after the therapist left – apparently she does not like to be gagged repeatedly (who would?). But each day has gotten better. She has started to like her pacifier and actually is soothed by sucking on it (at times). Tomorrow she will have a swallow study done. The therapist will give her liquids of varying consistencies and then x-ray her to see where they go (into her lungs or into her esophagus). This is a very important study. If it goes well, she can move to bottle feedings and eventually to nursing. This means she can have her feeding tube removed. Speaking of feedings, each day they have increased the amount she eats. She is currently eating 57 cc’s every 3 hours. By the time we take her home, she is going to be a porker! At her last weigh in that we witnessed she was 9 lbs. 8 oz!
Yesterday and today, Emily made some great progress. Yesterday, she was moved to a crib rather than the bed with a warmer – so she is able to hold her own body temperature now. And she also went off her oxygen. She has given the nurses a couple of scares where her oxygen levels dropped low, but then she brings them back up again. This too, will get better with time. And today, she was taken off one of her seizure medications - the one that makes her really sleepy. So as this gets out of her system, we will be able to see more and more of her personality (she seems to be a feisty one, so that should be interesting!). And the doctor told me that she will be moving tonight to an intermediate section of the NICU – as the doctor said “this is one step closer to the door”. So Mike and I are hopeful that she will get to come home soon.
The nurses allow us to do more and more which has been wonderful. We have been able to change diapers, bathe her and take her temperature and a few other things. It makes us feel like we are doing something to care for our daughter. I cannot begin to describe to you what a blessing Emily has been to us. She amazes us every single day. This experience has been amazing. No, it isn’t the way we expected things to go, but it is exactly the way that God had planned. I have clung to Psalm 139 lately:
13For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Emily is perfect in God’s eyes. She is exactly the way that God wants her to be. She was knit together in my womb by God Himself. He knows exactly who she will be and how many days she will have on this earth. And I am thankful that He has counted us worthy of being her parents. We do ask that you continue to pray for her as she grows. And pray that we will be the parents that she needs us to be – that God intended us to be. We have received countless emails from people who are praying for us & I cannot tell you what it means to us. There is incredible power in prayer!
Thank you for the overwhelming love and support that we have received from many of you. It has sustained us in those times when we think we can't go on. And yes we do have those times, but God is faithful. It is only through His strength that we get through each day. We could NOT do it on our own. We trust that He will be with us every step of the way and we take great comfort in that.
In HIS strength,
Dawn
October 25, 2007 - Yet Another Update
Hey y'all,
Emily had one of her final tests on Tuesday and passed with flying colors. It was a swallow test to make sure she could eat without food going into her lungs. Because she passed, it means two things...first, she can eat through a bottle, second, she is one step closer to coming home. She gets very tired eating through a bottle, so some of the food has to be fed through her feeding tube.
As soon as she can eat all her meals through a bottle, she can most likely come home. This may take days or a week, we are unsure. We tried two bottles yesterday with no success. It is a slow process.
Many of you have asked for pictures...so here are some of "my girls."
I have to go to work, so that's all I have time for.
Thanks for all your prayers and support,
Mike
Eph 2:4-7
Emily had one of her final tests on Tuesday and passed with flying colors. It was a swallow test to make sure she could eat without food going into her lungs. Because she passed, it means two things...first, she can eat through a bottle, second, she is one step closer to coming home. She gets very tired eating through a bottle, so some of the food has to be fed through her feeding tube.
As soon as she can eat all her meals through a bottle, she can most likely come home. This may take days or a week, we are unsure. We tried two bottles yesterday with no success. It is a slow process.
Many of you have asked for pictures...so here are some of "my girls."
I have to go to work, so that's all I have time for.
Thanks for all your prayers and support,
Mike
Eph 2:4-7
October 27, 2007 - Reality Check
Hello all,
The first thing I would like to do is help some of you to clear the clutter from your mail box. If you prefer not to get these emails, please let me know and I will remove you from my email list. I won't be hurt!
For the past few weeks we have been telling you all the great strides that Little Miss Emily has been making. She was moved to an Intermediate Care facility yesterday. She practically has her own room now. It is set up so that the parents can spend as much time there as possible. It has a recliner and a long bench to sleep on, but best of all, it has a television with cable and a DVD player.
I had a Men's Breakfast at my church this morning and it was a tremendous success. There was a lot of food and a pretty good turn out. When I got home, Dawn and I decided to try to spend as much time with Emily as possible. We brought a few DVD's and were ready for our nice long visit. We arrived at about 2:00 and she was sleeping (like a baby). We decided to leave her alone and let her sleep without disturbing her. She finally woke up around 2:45 and started to cry. We concluded that she was hungry, seeing meal time was 3:00 and had the nurse give her the food, via the tube.
The meal didn't stop her from crying! As a matter of fact, because of her crying, the meal took an hour to go down. She literally cried for an hour and a half. We did all that we could to calm her, but it was to no avail. Most of the time, it wasn't only Emily that was crying. I don't like to see my girls hurting, but there was nothing I could do.
When we asked the nurse for some suggestions on how to calm her down, she told us it was "neuro." I didn't really know what she meant, but at the same time I did. She was saying that there was nothing that we could do because it was something that is wrong with her. This hurt like a bullet going through the heart. We were devastated! We knew all along that eventually we were going to find out what her limitations were, but we didn't think it was coming this early. The doctor came in to talk to us and let us know there are some drugs that could calm her down without knocking her out. It broke our hearts to do it, but we believe, and know that she is much more comfortable on the drug.
We stayed there long enough for her next meal and she started to fuss as she had the meal before. The nurse gave her the drug and she almost immediately calmed down. She finished her food in half the time as before and remained calm the entire time.
As we were talking to the doctor, we came to realize that although she has eaten a few meals through the bottle, she has not been improving in this area. It has gotten to the point that only the speech therapist is now allowed to try to feed her. This is a major set back. They will try for two weeks to train her to bottle feed, if after two weeks she is unsuccessful; she will get the "G-Tube." (Tube going directly into her stomach)
As I mentioned, this was a major blow, but one that we were expecting. We had a long talk over dinner about how we can still trust God through the storm. The answer was easy, HE has provided us with everything and HE will continue to provide us with everything! HE knew this was coming and HE has prepared the way before us.
During the Men's Breakfast, I was sharing with the men how God is an amazing God. HE has truly blessed Dawn and I in so many different ways. HE brought us through back surgery, incredible indebtedness, unemployment, and so many other trials; HE will get us through this.
Let me explain to you how faith works. We have trusted God thus far in this trial, but in the back of my mind I know that there are immense medical bills piling up. We have good insurance, but it covers only 80%. That leaves a huge chunk for us to cover. I brought this to my pastor and asked him to keep us in prayer. Last week, after service, the pastor took up a special offering for Dawn and I. This was not my request, but he did it on his own. It came to almost $2000! The other day a friend of ours felt that she was to give us some money. We didn't ask for it, she just volunteered to give it to us, no strings attached. The amount...$1000. Last night, Dawn was reading through our insurance policy and there is a cap on the amount we have to pay out of pocket. Can you guess how much?...
$3000!!
We have a God who provides; that's how we can have the faith to know that we will make it though this storm in our lives. I have given my life to serving God and HE has blessed me beyond measure. It is my wish that all who read this email come to know God in the same way, so that HE may bless you as HE has blessed me. Some people may see this trial as a curse. "God is punishing you by giving you a child who is not healthy." To them I say what child is not a blessing to their parents! I AM blessed beyond measure.
I mourn for what I will not have with my daughter, but I rejoice that I was blessed with a daughter to begin with!
Please continue to pray that Emily continues to get stronger so that she can come home soon. That is our biggest struggle, having to leave her every day. I also ask those of you who already have a personal relationship with Christ to pray for those who read this email and don't know HIM. Pray for hearts to be softened and eyes to be opened.
I will end this email just as I have opened it. Again, if you choose to be taken off this list, I will not be offended. Simply reply with "Remove Me" in the subject line and your request will be granted.
I thank you all for your prayers and love,
Mike
Eph 2:4-7
The first thing I would like to do is help some of you to clear the clutter from your mail box. If you prefer not to get these emails, please let me know and I will remove you from my email list. I won't be hurt!
For the past few weeks we have been telling you all the great strides that Little Miss Emily has been making. She was moved to an Intermediate Care facility yesterday. She practically has her own room now. It is set up so that the parents can spend as much time there as possible. It has a recliner and a long bench to sleep on, but best of all, it has a television with cable and a DVD player.
I had a Men's Breakfast at my church this morning and it was a tremendous success. There was a lot of food and a pretty good turn out. When I got home, Dawn and I decided to try to spend as much time with Emily as possible. We brought a few DVD's and were ready for our nice long visit. We arrived at about 2:00 and she was sleeping (like a baby). We decided to leave her alone and let her sleep without disturbing her. She finally woke up around 2:45 and started to cry. We concluded that she was hungry, seeing meal time was 3:00 and had the nurse give her the food, via the tube.
The meal didn't stop her from crying! As a matter of fact, because of her crying, the meal took an hour to go down. She literally cried for an hour and a half. We did all that we could to calm her, but it was to no avail. Most of the time, it wasn't only Emily that was crying. I don't like to see my girls hurting, but there was nothing I could do.
When we asked the nurse for some suggestions on how to calm her down, she told us it was "neuro." I didn't really know what she meant, but at the same time I did. She was saying that there was nothing that we could do because it was something that is wrong with her. This hurt like a bullet going through the heart. We were devastated! We knew all along that eventually we were going to find out what her limitations were, but we didn't think it was coming this early. The doctor came in to talk to us and let us know there are some drugs that could calm her down without knocking her out. It broke our hearts to do it, but we believe, and know that she is much more comfortable on the drug.
We stayed there long enough for her next meal and she started to fuss as she had the meal before. The nurse gave her the drug and she almost immediately calmed down. She finished her food in half the time as before and remained calm the entire time.
As we were talking to the doctor, we came to realize that although she has eaten a few meals through the bottle, she has not been improving in this area. It has gotten to the point that only the speech therapist is now allowed to try to feed her. This is a major set back. They will try for two weeks to train her to bottle feed, if after two weeks she is unsuccessful; she will get the "G-Tube." (Tube going directly into her stomach)
As I mentioned, this was a major blow, but one that we were expecting. We had a long talk over dinner about how we can still trust God through the storm. The answer was easy, HE has provided us with everything and HE will continue to provide us with everything! HE knew this was coming and HE has prepared the way before us.
During the Men's Breakfast, I was sharing with the men how God is an amazing God. HE has truly blessed Dawn and I in so many different ways. HE brought us through back surgery, incredible indebtedness, unemployment, and so many other trials; HE will get us through this.
Let me explain to you how faith works. We have trusted God thus far in this trial, but in the back of my mind I know that there are immense medical bills piling up. We have good insurance, but it covers only 80%. That leaves a huge chunk for us to cover. I brought this to my pastor and asked him to keep us in prayer. Last week, after service, the pastor took up a special offering for Dawn and I. This was not my request, but he did it on his own. It came to almost $2000! The other day a friend of ours felt that she was to give us some money. We didn't ask for it, she just volunteered to give it to us, no strings attached. The amount...$1000. Last night, Dawn was reading through our insurance policy and there is a cap on the amount we have to pay out of pocket. Can you guess how much?...
$3000!!
We have a God who provides; that's how we can have the faith to know that we will make it though this storm in our lives. I have given my life to serving God and HE has blessed me beyond measure. It is my wish that all who read this email come to know God in the same way, so that HE may bless you as HE has blessed me. Some people may see this trial as a curse. "God is punishing you by giving you a child who is not healthy." To them I say what child is not a blessing to their parents! I AM blessed beyond measure.
I mourn for what I will not have with my daughter, but I rejoice that I was blessed with a daughter to begin with!
Please continue to pray that Emily continues to get stronger so that she can come home soon. That is our biggest struggle, having to leave her every day. I also ask those of you who already have a personal relationship with Christ to pray for those who read this email and don't know HIM. Pray for hearts to be softened and eyes to be opened.
I will end this email just as I have opened it. Again, if you choose to be taken off this list, I will not be offended. Simply reply with "Remove Me" in the subject line and your request will be granted.
I thank you all for your prayers and love,
Mike
Eph 2:4-7
November 3, 2007 - Emily Update (from Dawn)
Hello all,
After three weeks, the reality of Emily’s condition is starting to sink in. Many of you have asked why or how this happened. The doctor’s have not been able to give us an answer, and in all likelihood, probably never will. There is an answer that may be hard for some of you to comprehend. Before time began, God decided that Emily Rose would be deprived of oxygen while in the womb and would be born with brain damage. Now, I am not going to pretend to understand why God chose this. The sovereign God of the universe doesn’t exactly check with me before making decisions, but I have no doubt that this is exactly what God intended for Emily and for us as her parents.
Over the last 3 weeks I have wondered if I could really handle this. During my pregnancy, there were many times that I wondered if I could handle motherhood in general. Now that Emily is born and we know that there will be a long hard road ahead, I doubt myself even more. If we are all honest, there have been times in our lives when something came our way or happened to us that we thought we could not handle. This is no exception. But what I am reminded of time and time again is that I am not in this alone. Yes, I have Mike to help with parenting, and family and friends who are more than willing to help in any way that they can. But more than that, I have God by my side. Mike and I have seen some hard times in our lives and God has NEVER failed us – He is not about to start now. For some reason, God has chosen this for us. And He will equip us to handle it. He will give us the wisdom, strength and guidance that we need. We take great comfort in that.
This week, Mike and I decided to move forward with getting a g-tube for Emily. That is a feeding tube that will be inserted in her stomach. It is not the route that we wanted to go, but it will bring her home & at this point, that is what we want most. We want our little girl home with us! We can continue to work with her on bottle feedings and will do so. And if the Lord wills, she will eventually have her feeding tube removed. We would love that, but even if that never happens, we will continue to love Emily and love God for blessing us with her. We have really begun to face a lot of realities like that this week. Emily may never eat “normal” food or walk or do a lot of things that we all take for granted. Right now, we have no way to know what she will or will not do, but Mike and I are just trying to prepare for the hard road. We will love her no matter what she does or does not do. And more than that, we will continue to love God even if Emily doesn’t ever do the things we want her to do.
In her short life, Emily has been teaching us many things already. We have learned about sacrificial love – we are willing to do WHATEVER for our daughter – even if it is uncomfortable for us (and much of this has been). She has taught us to graciously receive from others as many have rallied around us in support (we cannot thank you enough for that!). She has also taught us about dependence. In today’s world, we learn to be strong and independent – we learn that we don’t need anyone. Well, Emily has taught us that we need to completely depend on God for EVERYTHING. Mike and I don’t know how to care for a special girl like Emily – we don’t even know where to begin. But that is exactly where God wants us – relying on Him for ALL of our needs.
So at this time when we are filled with doubts and fears about what the future holds, we continue to hang onto God with all our might. He will get us through whatever comes our way. He will give us wisdom when we need it, He will be our strength when we have none of our own. God is bigger than any problem we will face (Ephesians 3:20-21: Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.). He created Emily and knows exactly what she needs even if we don’t. He is Jehovah-jireh – the Great Provider! Please continue to pray for Emily and for us – there is INCREDIBLE power in prayer!
Love,
Dawn
After three weeks, the reality of Emily’s condition is starting to sink in. Many of you have asked why or how this happened. The doctor’s have not been able to give us an answer, and in all likelihood, probably never will. There is an answer that may be hard for some of you to comprehend. Before time began, God decided that Emily Rose would be deprived of oxygen while in the womb and would be born with brain damage. Now, I am not going to pretend to understand why God chose this. The sovereign God of the universe doesn’t exactly check with me before making decisions, but I have no doubt that this is exactly what God intended for Emily and for us as her parents.
Over the last 3 weeks I have wondered if I could really handle this. During my pregnancy, there were many times that I wondered if I could handle motherhood in general. Now that Emily is born and we know that there will be a long hard road ahead, I doubt myself even more. If we are all honest, there have been times in our lives when something came our way or happened to us that we thought we could not handle. This is no exception. But what I am reminded of time and time again is that I am not in this alone. Yes, I have Mike to help with parenting, and family and friends who are more than willing to help in any way that they can. But more than that, I have God by my side. Mike and I have seen some hard times in our lives and God has NEVER failed us – He is not about to start now. For some reason, God has chosen this for us. And He will equip us to handle it. He will give us the wisdom, strength and guidance that we need. We take great comfort in that.
This week, Mike and I decided to move forward with getting a g-tube for Emily. That is a feeding tube that will be inserted in her stomach. It is not the route that we wanted to go, but it will bring her home & at this point, that is what we want most. We want our little girl home with us! We can continue to work with her on bottle feedings and will do so. And if the Lord wills, she will eventually have her feeding tube removed. We would love that, but even if that never happens, we will continue to love Emily and love God for blessing us with her. We have really begun to face a lot of realities like that this week. Emily may never eat “normal” food or walk or do a lot of things that we all take for granted. Right now, we have no way to know what she will or will not do, but Mike and I are just trying to prepare for the hard road. We will love her no matter what she does or does not do. And more than that, we will continue to love God even if Emily doesn’t ever do the things we want her to do.
In her short life, Emily has been teaching us many things already. We have learned about sacrificial love – we are willing to do WHATEVER for our daughter – even if it is uncomfortable for us (and much of this has been). She has taught us to graciously receive from others as many have rallied around us in support (we cannot thank you enough for that!). She has also taught us about dependence. In today’s world, we learn to be strong and independent – we learn that we don’t need anyone. Well, Emily has taught us that we need to completely depend on God for EVERYTHING. Mike and I don’t know how to care for a special girl like Emily – we don’t even know where to begin. But that is exactly where God wants us – relying on Him for ALL of our needs.
So at this time when we are filled with doubts and fears about what the future holds, we continue to hang onto God with all our might. He will get us through whatever comes our way. He will give us wisdom when we need it, He will be our strength when we have none of our own. God is bigger than any problem we will face (Ephesians 3:20-21: Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.). He created Emily and knows exactly what she needs even if we don’t. He is Jehovah-jireh – the Great Provider! Please continue to pray for Emily and for us – there is INCREDIBLE power in prayer!
Love,
Dawn
November 3, 2007 - A Good Day
Hello y'all,
I know that you already received an email from Dawn earlier, but we just got home from the hospital and today was a different day! We have been praising Jesus through this storm and today we had a break in the clouds; so we must praise Him for that also.
We arrived at the hospital at around 1:30 and Emily was sound asleep. I picked her up as I usually do and laid her in my lap for a nice long while. (She does love being in her dad's arms!) She was quite content until it was time for dinner. We are learning how to deal with the nurses and told her what she needs to do for us. She complied and everything went smoothly. Emily has never been one you can call a "happy" baby. When she is awake she is always on the verge of tears. Today was a different day, though. She woke up and I changed her diaper and got her ready for her bottle. The nurse usually takes her temperature, measures her head and belly and gets her so upset that she won't eat through a bottle. The nurse that was with us today, said she would wait until she ate before she did the work up.
Emily was calm, so we decided to try to bottle feed her. We have not been successful thus far in our attempts, although the speech therapist has been successful many times. I tried for a little while and then came success. She started to drink from the bottle! Usually she tries for a little while and then gets very upset and cries until we all just give up. Today, she was calm and cool and took a little and then just looked at me very peacefully before trying again. She took about 10cc before she was just not interested any more. The biggest thing is that she never got upset. On a normal day she would scream and cry until we fed her though the tube.
After her feeding, she was tired and went off to sleep while Dawn and I went to dinner. We came back and she was still sleeping. Dawn held her for a while until it was time for her next feeding. Before her feeding, I got to give her a bath. I got her squeaky clean and she only complained when I had to turn her over to wash her back. We got some good pictures of her with her head full of shampoo. She is just so cute!
After bath time, it was dinner time; this time Dawn was able to get her to take 20cc (her meal consists of 80cc) and we could see a light at the end of the tunnel. When we spend a lot of time with her we can get a better feel of what she likes and what she doesn't like. We are slowly learning her needs and what works best for her. We actually feel like parents!
As I mentioned before; we praise God for every minute we get with our baby girl, but today we rejoice that God allowed us to see a different side of Emily. She was alert and fun to be around. For that I praise Jesus!
I just want you all to know that as Dawn wrote this morning, she will still be getting a G-tube next week and hopefully be coming home by the end of the week. We look forward to this day with great anticipation and also great fear. We know God will supply us with everything we need, but the thought of taking care of her 24/7 is kind of scary.
For all those who are anxiously awaiting her visit to Rhode Island this Christmas, we regret to inform you that we will be spending Christmas here in KY. There are just too many variables to traveling with Emily that we don't want to risk. She is our main concern and her health comes before anything else.
There are two reasons for sending this message today. The first is to praise God for the progress that He is making in Emily's life and the joy that we got to experience as parents tonight; second, to share with our family and friends that God hears your prayers and is watching over Emily in a special way.
Please continue to keep the faith and keep on praying. We are continually getting emails and cards from people who are inspired by our faith and are growing in their faith as well. It is my hope and prayer that the God that I love and serve will continue to open the eyes of the hearts of all who read this email and that His name would be glorified and magnified.
For all those who are reading this who do not have a personal relationship with Jesus Christ, I ask you to read the Gospel of John. We all have a Bible, but how many of us have not read the whole book of John? The Truth of God's Word will inspire you more than I ever could. If you have children, I recommend that you read it aloud to them as well. Reading the Bible is NEVER a waste of time. Try it once and you will see.
That is my lecture for today. You still need to go to church though; this doesn't count as a sermon.
As I close, I would like to tell you all again how much we appreciate all the emails and letters and genuine love that has been poured out to us these past three weeks. We have a Great God and He has blessed us beyond measure.
I love you all!!
Praising Jesus in the Storm,
Mike
Eph 2:4-7
I know that you already received an email from Dawn earlier, but we just got home from the hospital and today was a different day! We have been praising Jesus through this storm and today we had a break in the clouds; so we must praise Him for that also.
We arrived at the hospital at around 1:30 and Emily was sound asleep. I picked her up as I usually do and laid her in my lap for a nice long while. (She does love being in her dad's arms!) She was quite content until it was time for dinner. We are learning how to deal with the nurses and told her what she needs to do for us. She complied and everything went smoothly. Emily has never been one you can call a "happy" baby. When she is awake she is always on the verge of tears. Today was a different day, though. She woke up and I changed her diaper and got her ready for her bottle. The nurse usually takes her temperature, measures her head and belly and gets her so upset that she won't eat through a bottle. The nurse that was with us today, said she would wait until she ate before she did the work up.
Emily was calm, so we decided to try to bottle feed her. We have not been successful thus far in our attempts, although the speech therapist has been successful many times. I tried for a little while and then came success. She started to drink from the bottle! Usually she tries for a little while and then gets very upset and cries until we all just give up. Today, she was calm and cool and took a little and then just looked at me very peacefully before trying again. She took about 10cc before she was just not interested any more. The biggest thing is that she never got upset. On a normal day she would scream and cry until we fed her though the tube.
After her feeding, she was tired and went off to sleep while Dawn and I went to dinner. We came back and she was still sleeping. Dawn held her for a while until it was time for her next feeding. Before her feeding, I got to give her a bath. I got her squeaky clean and she only complained when I had to turn her over to wash her back. We got some good pictures of her with her head full of shampoo. She is just so cute!
After bath time, it was dinner time; this time Dawn was able to get her to take 20cc (her meal consists of 80cc) and we could see a light at the end of the tunnel. When we spend a lot of time with her we can get a better feel of what she likes and what she doesn't like. We are slowly learning her needs and what works best for her. We actually feel like parents!
As I mentioned before; we praise God for every minute we get with our baby girl, but today we rejoice that God allowed us to see a different side of Emily. She was alert and fun to be around. For that I praise Jesus!
I just want you all to know that as Dawn wrote this morning, she will still be getting a G-tube next week and hopefully be coming home by the end of the week. We look forward to this day with great anticipation and also great fear. We know God will supply us with everything we need, but the thought of taking care of her 24/7 is kind of scary.
For all those who are anxiously awaiting her visit to Rhode Island this Christmas, we regret to inform you that we will be spending Christmas here in KY. There are just too many variables to traveling with Emily that we don't want to risk. She is our main concern and her health comes before anything else.
There are two reasons for sending this message today. The first is to praise God for the progress that He is making in Emily's life and the joy that we got to experience as parents tonight; second, to share with our family and friends that God hears your prayers and is watching over Emily in a special way.
Please continue to keep the faith and keep on praying. We are continually getting emails and cards from people who are inspired by our faith and are growing in their faith as well. It is my hope and prayer that the God that I love and serve will continue to open the eyes of the hearts of all who read this email and that His name would be glorified and magnified.
For all those who are reading this who do not have a personal relationship with Jesus Christ, I ask you to read the Gospel of John. We all have a Bible, but how many of us have not read the whole book of John? The Truth of God's Word will inspire you more than I ever could. If you have children, I recommend that you read it aloud to them as well. Reading the Bible is NEVER a waste of time. Try it once and you will see.
That is my lecture for today. You still need to go to church though; this doesn't count as a sermon.
As I close, I would like to tell you all again how much we appreciate all the emails and letters and genuine love that has been poured out to us these past three weeks. We have a Great God and He has blessed us beyond measure.
I love you all!!
Praising Jesus in the Storm,
Mike
Eph 2:4-7
November 7, 2007 - What the doctors had to say...
Hello all,
Yesterday was a day to meet with all Emily's doctors. We started with the Neurologist who went over her MRI and EEG with us. He didn't really have any new information for us. It is entirely a waiting game. There is obvious damage to certain parts of her brain and the EEG showed that there is still "opportunity" for seizures. He would not pinpoint anything! It is too early to speculate anything except that there will be some problems. Right now she is having trouble with the reflexes on half of her body. We will only learn what other problems there are as she reaches or doesn't reach certain milestones in her life. She will have many different therapists working with her, plus mom and dad, so we will do the best we can to make her as mobile as she can be.
After he left, we talked to the Doctor in charge of her case. The best news that we got from her is that there is nothing stopping her from coming home except the G-tube. She informed us of different agencies that are ready and willing to work with us to get her the care she needs to live the best life she can.
As she was leaving, the surgeon walked in. We were able to discuss the G-tube and what that entails and all the fun stuff that goes with it. They are also going to do a procedure that will tie some of her stomach around her esophagus to stop reflux from occurring. God willing, she will have the surgery tomorrow. We are unsure of a time, but we know tomorrow. THEN, depending on her recovery and how quickly we learn how to use the tube...she can come home! We are anticipating early next week! This is the one thing that we have been hoping and waiting for all along. She can finally have consistent care from people who know and love her.
As you can imagine, we are gearing up for sleepless nights and stressful days; but we don't have to travel back and forth to the hospital all day long. We know that our schedule will consist of doctor’s visits and therapy, but we will enjoy every minute we get with our little one.
In the past month we have had the blessings of God rain down upon us and there is no way to thank you all. We have had someone lend us a car, many people cook meals for us, an outpouring of gifts given in the form of money and baby essentials and prayers too numerous to count. We never realized how loved we were until this happened. We are more amazed every day at how much people are willing to help us out...even people who don't know us. We know it is all from above, for we can do nothing good on our own accord, but only through the will of the Father.
We ask that you continue to pray for us and little Miss Emily as she has her surgery tomorrow and we prepare to take her home. The struggles for us are really just beginning. We have a lot to learn and look forward to each new challenge as an opportunity to share the love of Christ and give all the glory to God. He has blessed us with this child and we will make her a blessing to Him.
I have attached some of the latest pictures. She has many new outfits that she has to pose in, so mom and dad have been a little picture crazy; as is expected.
One last thing before I go. I graduated from seminary in May and have been unable to find a job in the area that I am searching. I am looking for an administrative position in a church or ministry. I am not gifted at preaching or teaching, although some might think these emails have been a little preachy. I have full confidence that God will provide for us financially in some way, shape or form, but we are unclear how this is going to happen. I am not asking you for a job, but I am asking that you pray specifically that God will guide us to where He needs me to be to serve Him best. He knows where He wants me to be, I just need to find where it is. Pray for wisdom and guidance on my part.
Thanks again for all your prayers and support,
We love you all!!!
Mike
Eph 2:4-7
PS Dawn has been reading the Gospel of John to Emily; how are you doing with that?
Yesterday was a day to meet with all Emily's doctors. We started with the Neurologist who went over her MRI and EEG with us. He didn't really have any new information for us. It is entirely a waiting game. There is obvious damage to certain parts of her brain and the EEG showed that there is still "opportunity" for seizures. He would not pinpoint anything! It is too early to speculate anything except that there will be some problems. Right now she is having trouble with the reflexes on half of her body. We will only learn what other problems there are as she reaches or doesn't reach certain milestones in her life. She will have many different therapists working with her, plus mom and dad, so we will do the best we can to make her as mobile as she can be.
After he left, we talked to the Doctor in charge of her case. The best news that we got from her is that there is nothing stopping her from coming home except the G-tube. She informed us of different agencies that are ready and willing to work with us to get her the care she needs to live the best life she can.
As she was leaving, the surgeon walked in. We were able to discuss the G-tube and what that entails and all the fun stuff that goes with it. They are also going to do a procedure that will tie some of her stomach around her esophagus to stop reflux from occurring. God willing, she will have the surgery tomorrow. We are unsure of a time, but we know tomorrow. THEN, depending on her recovery and how quickly we learn how to use the tube...she can come home! We are anticipating early next week! This is the one thing that we have been hoping and waiting for all along. She can finally have consistent care from people who know and love her.
As you can imagine, we are gearing up for sleepless nights and stressful days; but we don't have to travel back and forth to the hospital all day long. We know that our schedule will consist of doctor’s visits and therapy, but we will enjoy every minute we get with our little one.
In the past month we have had the blessings of God rain down upon us and there is no way to thank you all. We have had someone lend us a car, many people cook meals for us, an outpouring of gifts given in the form of money and baby essentials and prayers too numerous to count. We never realized how loved we were until this happened. We are more amazed every day at how much people are willing to help us out...even people who don't know us. We know it is all from above, for we can do nothing good on our own accord, but only through the will of the Father.
We ask that you continue to pray for us and little Miss Emily as she has her surgery tomorrow and we prepare to take her home. The struggles for us are really just beginning. We have a lot to learn and look forward to each new challenge as an opportunity to share the love of Christ and give all the glory to God. He has blessed us with this child and we will make her a blessing to Him.
I have attached some of the latest pictures. She has many new outfits that she has to pose in, so mom and dad have been a little picture crazy; as is expected.
One last thing before I go. I graduated from seminary in May and have been unable to find a job in the area that I am searching. I am looking for an administrative position in a church or ministry. I am not gifted at preaching or teaching, although some might think these emails have been a little preachy. I have full confidence that God will provide for us financially in some way, shape or form, but we are unclear how this is going to happen. I am not asking you for a job, but I am asking that you pray specifically that God will guide us to where He needs me to be to serve Him best. He knows where He wants me to be, I just need to find where it is. Pray for wisdom and guidance on my part.
Thanks again for all your prayers and support,
We love you all!!!
Mike
Eph 2:4-7
PS Dawn has been reading the Gospel of John to Emily; how are you doing with that?
November 7, 2007 - Surgery Tomorrow
Hey y'all,
Just a quick note to let you know that Emily's surgery will take place at 10:30 am tomorrow.
Thanks for all your prayers,
Mike
Eph 2:4-7
Just a quick note to let you know that Emily's surgery will take place at 10:30 am tomorrow.
Thanks for all your prayers,
Mike
Eph 2:4-7
November 9, 2007 - All is well
Hey y'all,
I know you are probably getting sick of seeing my name pop up every day on your email Inbox, but here I am again.
I just wanted to give you a short note to let you know that Emily came through the surgery without any complications and she is doing well. As expected, she is in a lot of pain, but they are giving her some good drugs to help her with that. If all goes well, they will start feeding her today or tomorrow through the tube.
I will keep you updated as things change. God willing, she can be home early next week!
Thanks for all your continued prayers and emails,
All for His glory,
Mike
Eph 2:4-7
I know you are probably getting sick of seeing my name pop up every day on your email Inbox, but here I am again.
I just wanted to give you a short note to let you know that Emily came through the surgery without any complications and she is doing well. As expected, she is in a lot of pain, but they are giving her some good drugs to help her with that. If all goes well, they will start feeding her today or tomorrow through the tube.
I will keep you updated as things change. God willing, she can be home early next week!
Thanks for all your continued prayers and emails,
All for His glory,
Mike
Eph 2:4-7
November 13, 2007 - HE is Still Sovereign
Hello all,
I'm sure by now some of you are thinking that we are here taking care of Emily in her new home, but that is not the case. As a matter of fact, we don't know when (again) she will be able to come home.
She had surgery last Thursday and all went well. She was recovering great and they fed her through the tube earlier than anticipated. It was looking great for her to come home on Monday or Tuesday (today). I sent Dawn to the hospital on Monday with directions to ask everyone what we need to do to make sure that she comes home tomorrow (which was today). She went there anticipating Emily coming home either today or tomorrow and was hit with a blow that took her breath away. The doctor told her that Emily was breathing too fast and her heart rate was too high. She then proceeded to tell her that there may be complications with her heart and she may need heart surgery. Too say the least, this took us by surprise. They never mentioned any of this before...and we spent the weekend getting the house ready for her to come home!
A brief explanation...when the baby is in the womb, it gets the oxygen for its blood from the mother. Because of this, there is a valve in the heart to divert some of the blood away from the lungs and back into the aorta. After birth, this valve closes and the lungs do the job of getting the oxygen into the blood stream. In Emily's case, it was thought that this valve was not closed (this is called a PDA); therefore, her blood was not getting the oxygen it needed and so she was breathing heavy and it was causing her heart rate to go up.
Yesterday, the cardiologist did an ECHO and determined that the valve, although not completely closed was not a cause of concern. The heart surgery would have been to close this valve, so the threat of heart surgery has been eliminated! Today, they did an EKG and we are hoping that will give us (and them) a better understanding for the increased rate of breathing.
Needless to say, every day in our household is an adventure. We never know what to expect from one day to the next. The only thing that we are sure of is that God is in control and He knows what He is doing. He is allowing these situations in our lives so that we will continually depend on Him...and we do!
So as for now, the G-tube is installed and she is eating fine. We are still trying to feed her with a bottle, but she has been a little temperamental with this. Some days she does good and other days, not so good. As I mentioned, we will know more tomorrow when we get the results of the EKG and we can get a better understanding of where we need to go from here.
Another concern has been her weight. She lost weight over the weekend, mostly because she had surgery and was eating far less than normal. Her food intake has increased and we are waiting to see if her weight also increases. It seems that the doctors think she is really cute (just like we do) and they don't want her to go home. She will get to come home some day, we just don't know when.
I know that it seems like we have a lot of drama here in our household...and we do; but I don't want to give the impression that we have it so bad. Dawn and I were talking about how blessed we really are. In the NICU there are babies that are far worse off than Emily and parents who never get to take their child home alive. We spend time with her every day and enjoy every minute that we get with her. There are some babies that have single mothers who have to work and never get to visit their child. There are many people who have it a lot worse than we do and we never want to forget that! We can get so caught up in the pity party that we are in, that we forget how good we have it.
Today, take a look at all the ways that God has blessed you and give Him thanks and praise for every little thing...even the next breath you take, for even that is a blessing from Him.
Have a great day because this is the day that the Lord has made, let us rejoice and be glad in it!
All for His glory,
Mike
Eph 2:4-7
I'm sure by now some of you are thinking that we are here taking care of Emily in her new home, but that is not the case. As a matter of fact, we don't know when (again) she will be able to come home.
She had surgery last Thursday and all went well. She was recovering great and they fed her through the tube earlier than anticipated. It was looking great for her to come home on Monday or Tuesday (today). I sent Dawn to the hospital on Monday with directions to ask everyone what we need to do to make sure that she comes home tomorrow (which was today). She went there anticipating Emily coming home either today or tomorrow and was hit with a blow that took her breath away. The doctor told her that Emily was breathing too fast and her heart rate was too high. She then proceeded to tell her that there may be complications with her heart and she may need heart surgery. Too say the least, this took us by surprise. They never mentioned any of this before...and we spent the weekend getting the house ready for her to come home!
A brief explanation...when the baby is in the womb, it gets the oxygen for its blood from the mother. Because of this, there is a valve in the heart to divert some of the blood away from the lungs and back into the aorta. After birth, this valve closes and the lungs do the job of getting the oxygen into the blood stream. In Emily's case, it was thought that this valve was not closed (this is called a PDA); therefore, her blood was not getting the oxygen it needed and so she was breathing heavy and it was causing her heart rate to go up.
Yesterday, the cardiologist did an ECHO and determined that the valve, although not completely closed was not a cause of concern. The heart surgery would have been to close this valve, so the threat of heart surgery has been eliminated! Today, they did an EKG and we are hoping that will give us (and them) a better understanding for the increased rate of breathing.
Needless to say, every day in our household is an adventure. We never know what to expect from one day to the next. The only thing that we are sure of is that God is in control and He knows what He is doing. He is allowing these situations in our lives so that we will continually depend on Him...and we do!
So as for now, the G-tube is installed and she is eating fine. We are still trying to feed her with a bottle, but she has been a little temperamental with this. Some days she does good and other days, not so good. As I mentioned, we will know more tomorrow when we get the results of the EKG and we can get a better understanding of where we need to go from here.
Another concern has been her weight. She lost weight over the weekend, mostly because she had surgery and was eating far less than normal. Her food intake has increased and we are waiting to see if her weight also increases. It seems that the doctors think she is really cute (just like we do) and they don't want her to go home. She will get to come home some day, we just don't know when.
I know that it seems like we have a lot of drama here in our household...and we do; but I don't want to give the impression that we have it so bad. Dawn and I were talking about how blessed we really are. In the NICU there are babies that are far worse off than Emily and parents who never get to take their child home alive. We spend time with her every day and enjoy every minute that we get with her. There are some babies that have single mothers who have to work and never get to visit their child. There are many people who have it a lot worse than we do and we never want to forget that! We can get so caught up in the pity party that we are in, that we forget how good we have it.
Today, take a look at all the ways that God has blessed you and give Him thanks and praise for every little thing...even the next breath you take, for even that is a blessing from Him.
Have a great day because this is the day that the Lord has made, let us rejoice and be glad in it!
All for His glory,
Mike
Eph 2:4-7
November 16, 2007 - The latest news on Emily
Hello all,
Just wanted to update you on Emily and let you know about the news that we have received today.
Yesterday, I talked to the cardiologist and here is the scoop (in the plainest English I can muster): As Mike mentioned, they are not concerned about the valve in Emily's heart that did not close - the opening is not big enough to cause issues for her. However, when they did the echo-cardiogram they did discover something odd. It looks like she has a Partial Anomalous Pulmonary Venous Return. That means that one of the veins that is supposed to go from her lungs to the left side of her heart appears to be going to the right side of the heart instead. This causes the right side of her heart to work harder than it should and can cause it to get bigger than the left side. Many people live with this condition for a long time & don't even know that they have it. Since Emily's symptoms are not that serious they are not going to take action right now. She may need to have this corrected surgically as she gets older (maybe when she is 6 or 7). So in the meantime, Emily will have one more doctor to visit on a regular basis as the cardiologists keeps an eye on her heart to make sure things do not get worse.
The surgeon has checked on Emily and says that she looks good - she has been healing well from her g-tube & nissen surgery. He may change the tube that she has before we are sent home, but that is a minor thing and will not hold us up for long.
Now on to the good news...........
Emily will be able to go home on Monday as long as she continues to gain weight on Saturday & Sunday. Mike and I have talked about sneaking her some extra feedings just to make sure this happens! As of last night she weighed 10 lbs. 10 oz. - she put on weight for the first time in quite a few days. She has been losing weight since the surgery even though she has been eating more than 4 ounces at each feeding. They switched her formula to a soy formula. So far this seems to be helping with the weight gain & some other issues she has had (excessive gas & explosive diarrhea - YUCK!).
One thing that we do ask that you pray for (besides her gaining weight ), is her bottle feeding. Since the surgery she has a lot of excess secretions in her mouth & this makes her gag and retch. Because of the nissen she can not throw up, so when she gags it is pretty horrendous to watch. She does OK spitting it out or sometimes swallowing it, but it seems that she will have to learn how to handle this on a long term basis. We think this issue has caused her to lose interest in bottle feeding - she seems to think that she will gag whenever you stick the bottle in her mouth. So we need to work on this with her and the speech therapist. Our hope was that she would do well with the bottle feeding once she went home and right now we are not sure how this will go. So we ask that you pray about this. We are thankful that she can still get the nutrients that she needs through her g-tube & this won't affect her health, but it would be nice if she would eat from a bottle and eventually have the g-tube removed if that is what God wills.
Mike and I have talked a lot recently about how thankful we are. Spending time in the NICU helps us to realize that we really don't have it so bad (although it may sound that way to some of you). God has blessed us with a beautiful girl and we are so grateful. She has some challenges ahead of her, but they are nothing compared to the struggles a lot of others have. And we know that the Lord is with us every step of the way - that brings us such comfort!
We do thank you for all of the support, prayers and love that has been poured out on us. God has provided for us in every way possible. We will continue to keep you posted about Emily's progress.
In HIS strength,
Dawn
Just wanted to update you on Emily and let you know about the news that we have received today.
Yesterday, I talked to the cardiologist and here is the scoop (in the plainest English I can muster): As Mike mentioned, they are not concerned about the valve in Emily's heart that did not close - the opening is not big enough to cause issues for her. However, when they did the echo-cardiogram they did discover something odd. It looks like she has a Partial Anomalous Pulmonary Venous Return. That means that one of the veins that is supposed to go from her lungs to the left side of her heart appears to be going to the right side of the heart instead. This causes the right side of her heart to work harder than it should and can cause it to get bigger than the left side. Many people live with this condition for a long time & don't even know that they have it. Since Emily's symptoms are not that serious they are not going to take action right now. She may need to have this corrected surgically as she gets older (maybe when she is 6 or 7). So in the meantime, Emily will have one more doctor to visit on a regular basis as the cardiologists keeps an eye on her heart to make sure things do not get worse.
The surgeon has checked on Emily and says that she looks good - she has been healing well from her g-tube & nissen surgery. He may change the tube that she has before we are sent home, but that is a minor thing and will not hold us up for long.
Now on to the good news...........
Emily will be able to go home on Monday as long as she continues to gain weight on Saturday & Sunday. Mike and I have talked about sneaking her some extra feedings just to make sure this happens! As of last night she weighed 10 lbs. 10 oz. - she put on weight for the first time in quite a few days. She has been losing weight since the surgery even though she has been eating more than 4 ounces at each feeding. They switched her formula to a soy formula. So far this seems to be helping with the weight gain & some other issues she has had (excessive gas & explosive diarrhea - YUCK!).
One thing that we do ask that you pray for (besides her gaining weight ), is her bottle feeding. Since the surgery she has a lot of excess secretions in her mouth & this makes her gag and retch. Because of the nissen she can not throw up, so when she gags it is pretty horrendous to watch. She does OK spitting it out or sometimes swallowing it, but it seems that she will have to learn how to handle this on a long term basis. We think this issue has caused her to lose interest in bottle feeding - she seems to think that she will gag whenever you stick the bottle in her mouth. So we need to work on this with her and the speech therapist. Our hope was that she would do well with the bottle feeding once she went home and right now we are not sure how this will go. So we ask that you pray about this. We are thankful that she can still get the nutrients that she needs through her g-tube & this won't affect her health, but it would be nice if she would eat from a bottle and eventually have the g-tube removed if that is what God wills.
Mike and I have talked a lot recently about how thankful we are. Spending time in the NICU helps us to realize that we really don't have it so bad (although it may sound that way to some of you). God has blessed us with a beautiful girl and we are so grateful. She has some challenges ahead of her, but they are nothing compared to the struggles a lot of others have. And we know that the Lord is with us every step of the way - that brings us such comfort!
We do thank you for all of the support, prayers and love that has been poured out on us. God has provided for us in every way possible. We will continue to keep you posted about Emily's progress.
In HIS strength,
Dawn
November 19, 2007 - Homeward Bound!
Hello y'all,
Today was a banner day in our household! Emily Rose is finally home! We can not begin to express our joy! I didn't believe it was going to happen until we finally had her in the car and we were driving away. I didn't want to get my hopes up too high because they have been shot down so many times before. She is asleep right now and has been a little fussy at times, but nothing we can't handle.
Only time will tell how well she does with sleeping tonight. The nurses told us that the other night she woke up around 4:00 am and began fussing. They turned on the TV to VH1 (certainly not our first choice!) and she quieted down...until it came to a commercial; then she cried until the music came on again. I guess she likes her music. At least from now on Dawn and I can monitor the kind of music she listens to. It's only Christian music with a dash of country once in a while; but no Toby Keith.
We realize that many of you will want to come and see little Emily, but we ask that you follow a few rules that Dawn and I have agreed upon. First and foremost, please don't drop by unannounced. We prefer you call and set up a time that works for us. She has a lot of doctor’s appointments, so we may not even be home. We also want to schedule your time when she will be most alert and not interfering with her sleeping schedule...although she can sleep through a train wreck.
Second, we ask that you refrain from bringing your children (12 and under) with you for a visit. Because of her surgery and the medications that she is on, her immune system is not fully developed and we want to keep her as healthy as possible for as long as we can. This also refers to you, as the visitor. If you are experiencing cold symptoms, please hold off your visits until you are feeling better.
On a different note...God has poured His blessings upon us in the past month through our friends and family, and Dawn and I want to give back. What we have decided to do is purchase hooded sweatshirts for the homeless in downtown Louisville. So, if you were planning on buying something for Dawn, me or even Emily this Christmas we ask that you refrain! Emily has enough outfits in various sizes to last us until late spring, so resist the desire to buy her more. She doesn't need any more toys, stuffed animals or things that squeak. What we ask that you do instead, is make a donation to a charity in her name; you could send us a check and we will put it towards a sweatshirt, or you could give to another cause of your choice. If you desire, you could mail us a sweatshirt that you don't wear any more and we will add it to our collection. My goal is to give away between 50 and 100 hooded sweatshirts.
Again, we want to thank you all for the outpouring of love, prayers and support. Our cup overfloweth! Not a day goes by that we don't get a card or package in the mail and we know it is God providing for our every need.
We love you all and covet your continued prayers as we begin to find out what it is really like being a full time parent.
All for His glory,
Mike
Eph 2:4-7
PS Enjoy the picture of Emily on her first day at home.
Today was a banner day in our household! Emily Rose is finally home! We can not begin to express our joy! I didn't believe it was going to happen until we finally had her in the car and we were driving away. I didn't want to get my hopes up too high because they have been shot down so many times before. She is asleep right now and has been a little fussy at times, but nothing we can't handle.
Only time will tell how well she does with sleeping tonight. The nurses told us that the other night she woke up around 4:00 am and began fussing. They turned on the TV to VH1 (certainly not our first choice!) and she quieted down...until it came to a commercial; then she cried until the music came on again. I guess she likes her music. At least from now on Dawn and I can monitor the kind of music she listens to. It's only Christian music with a dash of country once in a while; but no Toby Keith.
We realize that many of you will want to come and see little Emily, but we ask that you follow a few rules that Dawn and I have agreed upon. First and foremost, please don't drop by unannounced. We prefer you call and set up a time that works for us. She has a lot of doctor’s appointments, so we may not even be home. We also want to schedule your time when she will be most alert and not interfering with her sleeping schedule...although she can sleep through a train wreck.
Second, we ask that you refrain from bringing your children (12 and under) with you for a visit. Because of her surgery and the medications that she is on, her immune system is not fully developed and we want to keep her as healthy as possible for as long as we can. This also refers to you, as the visitor. If you are experiencing cold symptoms, please hold off your visits until you are feeling better.
On a different note...God has poured His blessings upon us in the past month through our friends and family, and Dawn and I want to give back. What we have decided to do is purchase hooded sweatshirts for the homeless in downtown Louisville. So, if you were planning on buying something for Dawn, me or even Emily this Christmas we ask that you refrain! Emily has enough outfits in various sizes to last us until late spring, so resist the desire to buy her more. She doesn't need any more toys, stuffed animals or things that squeak. What we ask that you do instead, is make a donation to a charity in her name; you could send us a check and we will put it towards a sweatshirt, or you could give to another cause of your choice. If you desire, you could mail us a sweatshirt that you don't wear any more and we will add it to our collection. My goal is to give away between 50 and 100 hooded sweatshirts.
Again, we want to thank you all for the outpouring of love, prayers and support. Our cup overfloweth! Not a day goes by that we don't get a card or package in the mail and we know it is God providing for our every need.
We love you all and covet your continued prayers as we begin to find out what it is really like being a full time parent.
All for His glory,
Mike
Eph 2:4-7
PS Enjoy the picture of Emily on her first day at home.
November 26, 2007 - Our First Week
Hello all,
As I always do, I would like to first say that we thank you all for your continued prayers and blessings that continue to come in. God has provided for our every need and our cup is overflowing with blessings from above. We give God the glory for every good thing that we receive because we know that it ultimately came from Him.
Our week started off very quiet and uneventful. I took the beginning part of the week off from work so that Dawn and I could get adjusted to our new lifestyle. We got our first real taste of parenthood and enjoyed the fact that we were finally in control of how Emily was being treated. Our biggest frustration with the hospital was the fact that she had a different nurse every day. Each nurse had a different way of doing things and Emily didn't always like the way she was treated.
It took us a few days to figure things out and get Emily adjusted to the way we do things. Our biggest problem was and still is the fact that she doesn't sleep during the day. She wakes up at 6:00 for her feeding and can stay up until 4:00 in the afternoon sometimes. We are trying to break her of this habit, but it may take some time.
Thanksgiving was a wonderful day! First and foremost, we were thankful that we got to spend the day with our new daughter. A few ladies from our church made us a turkey dinner and all the fixin's, and Dawn and Emily and I enjoyed our day watching the parade and It's a Wonderful Life. We have seen the movie a hundred times, but this year it hit home a lot more. At the end, when the whole community comes to the rescue of George Bailey by showering him with love and gifts...that's how we have felt for the past month. You never know how much you are loved and appreciated until you have a tragedy in your life and you find out how many people really love you and care for you. We are truly blessed!
I decided to go back to work on Friday and that's when things took a turn for the worst. I came home for lunch (I work a mile down the road) and everything was fine, although Dawn still had not had time to take a shower. I ate and went back to work. About 2:30, I got a call from Dawn to come home now! The feeding tube came out of Emily's chest! When we left the NICU, the nurse told us not to panic if this happened because most likely it would; but who can help panicking when you know that your baby has a hole in her chest and now you have to go to the emergency room to have the tube put back in.
I rushed home, packed up Emily and Dawn and sped to the Children's Hospital. The funny thing is that Emily was more calm than Dawn and I. She cried a little, but I think Dawn was crying more. After waiting about an hour, we were finally seen by a doctor. He tried to put a tube in and couldn't get it in the hole because it had closed up. This is not what we wanted to hear! Emily didn't want to hear that either!
A little blurb about the feeding tube. There are three different tubes she can get. The first is a dark yellow tube that you may have seen if you have ever given blood. They tie a tube around your arm to stop the flow of blood so they can find a vein. This is what the tube looked like that she had in her. At the end of the tube was an expandable tip to keep it in the body; but it is made of rubber, so it comes out easily. The next tube, which is what she has now, is a clear plastic and has a balloon on the end. The doctor inserts the tube and then fills the balloon with a little water to keep it in place. The tube comes out of the chest, just below the rib cage, (just like the first one) but this one has a rubber washer on the outside of the chest to hold it in place. So the balloon keeps it from coming out and the washer keeps it from going in. The third and final tube is a button. This tube will lay flat to the skin and will pop open when it is time to feed her. This is the thing that will be put on when the hole completely heals. Think of it like an earring. If you take the earring out too early, the hole will close up, but once it heals, you can go a few days without an earring and it won't close on you. We are waiting for it to completely heal!
Back to the story...because the tube wouldn't go in, the doctor decided to sedate her and reopen the hole. In order to sedate her, they had to put an IV in to give her the drugs and to test her blood. It took three nurses and six tries before they got a successful IV. They tried her two hands, her two arms (one arm twice) and finally had to put it in her foot. Every time they tried, they had to hold her down and listen to her scream until they finished. This was a long and exhausting hour and a half!
With the IV in and the drugs flowing, they were able to expand her hole. They did this by inserting metal rods into the hole. A small one, then a bigger one, and a bigger one, until they got their desired width. It was a good thing that she was out cold for this. It was hard to watch!
They put the tube in and blew up the balloon and showed us how to take care of it. She was then taken to have x-rays to make sure it was in the right place...then more x-rays 20 minutes later and then we fed her to make sure it worked. Six hours later, we left the emergency room physically and emotionally exhausted!
Saturday was another tough day. With the first tube, it was easy for Emily to push out the food. If she was experiencing gas, she would tighten up her stomach and she could burp through the tube. This new tube is not as easy; she has to work to push out and the first day of feeding, she couldn't do it. So, after every feeding she had an upset stomach and would cry uncontrollably for an hour or two. Needless to say, we were discouraged and not too excited about this new tube.
Sunday took a turn for the better. She learned how to push out with the new tube, so gas was less of an issue. She was more calm after feeding and was actually a joy to be around again. We think we are past the worst of it and the future looks bright. We know that at every turn, there are going to be trials that will test our faith and our patience, but we serve a mighty God who is in control of all things and He will not give us more than we can handle.
Today, Dawn spent the day alone with Emily and did a great job!
I feel like I have so much more to say, but I am experiencing writers block. I will give you another update later in the week to add all that I may have wanted to say, but didn't have the words for it tonight.
We love you all,
Mike
Eph 2:4-7
As I always do, I would like to first say that we thank you all for your continued prayers and blessings that continue to come in. God has provided for our every need and our cup is overflowing with blessings from above. We give God the glory for every good thing that we receive because we know that it ultimately came from Him.
Our week started off very quiet and uneventful. I took the beginning part of the week off from work so that Dawn and I could get adjusted to our new lifestyle. We got our first real taste of parenthood and enjoyed the fact that we were finally in control of how Emily was being treated. Our biggest frustration with the hospital was the fact that she had a different nurse every day. Each nurse had a different way of doing things and Emily didn't always like the way she was treated.
It took us a few days to figure things out and get Emily adjusted to the way we do things. Our biggest problem was and still is the fact that she doesn't sleep during the day. She wakes up at 6:00 for her feeding and can stay up until 4:00 in the afternoon sometimes. We are trying to break her of this habit, but it may take some time.
Thanksgiving was a wonderful day! First and foremost, we were thankful that we got to spend the day with our new daughter. A few ladies from our church made us a turkey dinner and all the fixin's, and Dawn and Emily and I enjoyed our day watching the parade and It's a Wonderful Life. We have seen the movie a hundred times, but this year it hit home a lot more. At the end, when the whole community comes to the rescue of George Bailey by showering him with love and gifts...that's how we have felt for the past month. You never know how much you are loved and appreciated until you have a tragedy in your life and you find out how many people really love you and care for you. We are truly blessed!
I decided to go back to work on Friday and that's when things took a turn for the worst. I came home for lunch (I work a mile down the road) and everything was fine, although Dawn still had not had time to take a shower. I ate and went back to work. About 2:30, I got a call from Dawn to come home now! The feeding tube came out of Emily's chest! When we left the NICU, the nurse told us not to panic if this happened because most likely it would; but who can help panicking when you know that your baby has a hole in her chest and now you have to go to the emergency room to have the tube put back in.
I rushed home, packed up Emily and Dawn and sped to the Children's Hospital. The funny thing is that Emily was more calm than Dawn and I. She cried a little, but I think Dawn was crying more. After waiting about an hour, we were finally seen by a doctor. He tried to put a tube in and couldn't get it in the hole because it had closed up. This is not what we wanted to hear! Emily didn't want to hear that either!
A little blurb about the feeding tube. There are three different tubes she can get. The first is a dark yellow tube that you may have seen if you have ever given blood. They tie a tube around your arm to stop the flow of blood so they can find a vein. This is what the tube looked like that she had in her. At the end of the tube was an expandable tip to keep it in the body; but it is made of rubber, so it comes out easily. The next tube, which is what she has now, is a clear plastic and has a balloon on the end. The doctor inserts the tube and then fills the balloon with a little water to keep it in place. The tube comes out of the chest, just below the rib cage, (just like the first one) but this one has a rubber washer on the outside of the chest to hold it in place. So the balloon keeps it from coming out and the washer keeps it from going in. The third and final tube is a button. This tube will lay flat to the skin and will pop open when it is time to feed her. This is the thing that will be put on when the hole completely heals. Think of it like an earring. If you take the earring out too early, the hole will close up, but once it heals, you can go a few days without an earring and it won't close on you. We are waiting for it to completely heal!
Back to the story...because the tube wouldn't go in, the doctor decided to sedate her and reopen the hole. In order to sedate her, they had to put an IV in to give her the drugs and to test her blood. It took three nurses and six tries before they got a successful IV. They tried her two hands, her two arms (one arm twice) and finally had to put it in her foot. Every time they tried, they had to hold her down and listen to her scream until they finished. This was a long and exhausting hour and a half!
With the IV in and the drugs flowing, they were able to expand her hole. They did this by inserting metal rods into the hole. A small one, then a bigger one, and a bigger one, until they got their desired width. It was a good thing that she was out cold for this. It was hard to watch!
They put the tube in and blew up the balloon and showed us how to take care of it. She was then taken to have x-rays to make sure it was in the right place...then more x-rays 20 minutes later and then we fed her to make sure it worked. Six hours later, we left the emergency room physically and emotionally exhausted!
Saturday was another tough day. With the first tube, it was easy for Emily to push out the food. If she was experiencing gas, she would tighten up her stomach and she could burp through the tube. This new tube is not as easy; she has to work to push out and the first day of feeding, she couldn't do it. So, after every feeding she had an upset stomach and would cry uncontrollably for an hour or two. Needless to say, we were discouraged and not too excited about this new tube.
Sunday took a turn for the better. She learned how to push out with the new tube, so gas was less of an issue. She was more calm after feeding and was actually a joy to be around again. We think we are past the worst of it and the future looks bright. We know that at every turn, there are going to be trials that will test our faith and our patience, but we serve a mighty God who is in control of all things and He will not give us more than we can handle.
Today, Dawn spent the day alone with Emily and did a great job!
I feel like I have so much more to say, but I am experiencing writers block. I will give you another update later in the week to add all that I may have wanted to say, but didn't have the words for it tonight.
We love you all,
Mike
Eph 2:4-7
December 8, 2007 - Emily
Hello everyone,
Here is the latest on little Emily Rose:
She had an appointment with the neonatologist this week. At this appointment, we met with a doctor and an occupational therapist. Aside from a basic physical, they did an hour long evaluation of Emily to determine what kind of therapy she will need now that she has left the NICU. They checked her vision & hearing and her motor skills, muscle tone & strength. They also asked me about any concerns that I had. Based on all of that, they send a referral to First Steps. It is a wonderful program! Basically the therapists will come to our home to work with us. They will teach us exercises that we can do with Emily on our own.
Our main concern with Emily has been her eating. Not only does she avoid the bottle like the plague, but she has a very hard time at every feeding through her tube. We feed her every 4 hours and it is not a fun experience for any of us. If she is awake during her feeding she is usually crying (OK, really screaming) and wiggling around making it very difficult for the formula to go down. And if she sleeps through the feeding, she will wake up screaming. Most of the time, her crying spells will last for about an hour, either during her feeding or after. We think she is in pain from gas. Since her surgery, she cannot burp, so she has to “burp” through the feeding tube. With the original feeding tube she had, she seemed to be able to do this pretty easily. Since that tube came out & they put in a new one, she has a very hard time burping. It is awful to know that our daughter is in pain and we cannot do anything to help.
The end result of the evaluation with the neonatologist & therapist is this: we will be working with a nutritionist, a speech therapist, a physical therapist and a group called Visually Impaired Preschoolers (VIPS). The nutritionist and speech therapist will work with us on the eating/feeding problems. Emily needs physical therapy because her muscle tone and strength are not what they should be. One side of her body is stiffer than the other & does not move as well. She also turns her head to one side and this has caused some stiffness in her neck muscles (this affects her ability to lift her head too). And her vision seems to be impaired too. They said that her vision itself seems OK, but it seems that her brain does not “register” what she is looking at. VIPS will come to our house to do their own evaluation and then work out a plan based on what they find.
The interesting thing about her vision is this – we went to the ophthalmologist afterwards and he said the same thing after only spending about 5 minutes with Emily. He said it is not uncommon in babies her age for the brain and eye to be out of sync. She may grow out of it or she could have vision problems for the next 95 years (his words, not mine). As with many other things in Emily’s life, we will have to wait and see. I have to be honest, I am not really sure how they know that her brain is not picking up on what she is looking at, but they both said the same thing without knowing what the other thought. Her vision problems were a shock to us. Mike and I had no reason to think there were any problems there. She watches the bears on her mobile go around, she will look at us, stare at the TV or the ceiling fan in the living room. We just didn’t think there was any issue other than the fact that her eyes will go back and forth really fast at times (which was the reason for the appointment with the ophthalmologist in the first place).
These appointments can be a little tough to take. The doctors are painfully honest. At the neonatologist, I was told Emily will have some pretty significant challenges, but they want to help her to do as much as she can (from the tone of this statement, the doctor doesn’t think that will be very much). For me, accepting the fact that my daughter has cerebral palsy has been a process. I take in a bit at a time. And I think there are times when I am in denial. When I see her at home doing things that I think any other baby would be doing, it is very easy for me to put it out of my mind. So hearing such brutal honesty can be like a punch in the stomach. On one hand, I need to keep a realistic view of what Emily’s life will be with her diagnosis, but on the other hand I don’t want to set limits for her. And I certainly don’t want to set limits on God. I don’t know what He has planned for Emily. I just know that I am going to love Emily and do everything that I can to help her to reach her potential (whatever that may be).
God has already used Emily to touch many people and I am so thankful. I know that Mike and I learn something new every day. We are learning to appreciate the abilities that we take for granted (walking, talking, seeing, etc.). We are learning about the sacrificial love of parenting - for 2 selfish people this is a tough lesson to learn! As we approach Christmas, I have been thinking about the sacrificial love of God. He selflessly sent His only son to earth, not to be remembered as the cute little baby lying in a manger, but to be remembered as the perfect man who died on the cross for the sins of man. What an amazing thought! I cannot stand to see my daughter cry in pain because of gas, but God was willing watch His son endure torture on behalf of His children. What an incredible God we serve. He knew our greatest need was a Savior and He gave His own son to meet that need. So as you shop for Christmas gifts for family & friends, I hope that you will remember THE GIFT that was given to meet your greatest need.
In HIS strength,
Dawn
Here is the latest on little Emily Rose:
She had an appointment with the neonatologist this week. At this appointment, we met with a doctor and an occupational therapist. Aside from a basic physical, they did an hour long evaluation of Emily to determine what kind of therapy she will need now that she has left the NICU. They checked her vision & hearing and her motor skills, muscle tone & strength. They also asked me about any concerns that I had. Based on all of that, they send a referral to First Steps. It is a wonderful program! Basically the therapists will come to our home to work with us. They will teach us exercises that we can do with Emily on our own.
Our main concern with Emily has been her eating. Not only does she avoid the bottle like the plague, but she has a very hard time at every feeding through her tube. We feed her every 4 hours and it is not a fun experience for any of us. If she is awake during her feeding she is usually crying (OK, really screaming) and wiggling around making it very difficult for the formula to go down. And if she sleeps through the feeding, she will wake up screaming. Most of the time, her crying spells will last for about an hour, either during her feeding or after. We think she is in pain from gas. Since her surgery, she cannot burp, so she has to “burp” through the feeding tube. With the original feeding tube she had, she seemed to be able to do this pretty easily. Since that tube came out & they put in a new one, she has a very hard time burping. It is awful to know that our daughter is in pain and we cannot do anything to help.
The end result of the evaluation with the neonatologist & therapist is this: we will be working with a nutritionist, a speech therapist, a physical therapist and a group called Visually Impaired Preschoolers (VIPS). The nutritionist and speech therapist will work with us on the eating/feeding problems. Emily needs physical therapy because her muscle tone and strength are not what they should be. One side of her body is stiffer than the other & does not move as well. She also turns her head to one side and this has caused some stiffness in her neck muscles (this affects her ability to lift her head too). And her vision seems to be impaired too. They said that her vision itself seems OK, but it seems that her brain does not “register” what she is looking at. VIPS will come to our house to do their own evaluation and then work out a plan based on what they find.
The interesting thing about her vision is this – we went to the ophthalmologist afterwards and he said the same thing after only spending about 5 minutes with Emily. He said it is not uncommon in babies her age for the brain and eye to be out of sync. She may grow out of it or she could have vision problems for the next 95 years (his words, not mine). As with many other things in Emily’s life, we will have to wait and see. I have to be honest, I am not really sure how they know that her brain is not picking up on what she is looking at, but they both said the same thing without knowing what the other thought. Her vision problems were a shock to us. Mike and I had no reason to think there were any problems there. She watches the bears on her mobile go around, she will look at us, stare at the TV or the ceiling fan in the living room. We just didn’t think there was any issue other than the fact that her eyes will go back and forth really fast at times (which was the reason for the appointment with the ophthalmologist in the first place).
These appointments can be a little tough to take. The doctors are painfully honest. At the neonatologist, I was told Emily will have some pretty significant challenges, but they want to help her to do as much as she can (from the tone of this statement, the doctor doesn’t think that will be very much). For me, accepting the fact that my daughter has cerebral palsy has been a process. I take in a bit at a time. And I think there are times when I am in denial. When I see her at home doing things that I think any other baby would be doing, it is very easy for me to put it out of my mind. So hearing such brutal honesty can be like a punch in the stomach. On one hand, I need to keep a realistic view of what Emily’s life will be with her diagnosis, but on the other hand I don’t want to set limits for her. And I certainly don’t want to set limits on God. I don’t know what He has planned for Emily. I just know that I am going to love Emily and do everything that I can to help her to reach her potential (whatever that may be).
God has already used Emily to touch many people and I am so thankful. I know that Mike and I learn something new every day. We are learning to appreciate the abilities that we take for granted (walking, talking, seeing, etc.). We are learning about the sacrificial love of parenting - for 2 selfish people this is a tough lesson to learn! As we approach Christmas, I have been thinking about the sacrificial love of God. He selflessly sent His only son to earth, not to be remembered as the cute little baby lying in a manger, but to be remembered as the perfect man who died on the cross for the sins of man. What an amazing thought! I cannot stand to see my daughter cry in pain because of gas, but God was willing watch His son endure torture on behalf of His children. What an incredible God we serve. He knew our greatest need was a Savior and He gave His own son to meet that need. So as you shop for Christmas gifts for family & friends, I hope that you will remember THE GIFT that was given to meet your greatest need.
In HIS strength,
Dawn
December 26, 2007 - Christmas Update
Hello all,
I know that it has been a while since we have sent out an update, but there has not been much change with Emily and we have been a little busy.
First, I would like to mention that Emily got her feeding tube changed to the button last week. I would like to say that things with her feedings have changed, but the change is small. She has the ability to push gas out a lot easier, but she is still having trouble with gas. It takes about 45 minutes to an hour to feed her and she is crying for the better part of it. With the button, it is easier for her to push out the food, so when she cries, everything that she has just eaten, comes right back out. It gets a little frustrating!
We are supposed to meet with a nutritionist, but with the holiday season, everything is being delayed more than we would like. We feel that if we changed her formula or something about the way she eats, she would be better off, but we won't know what to do until we meet with her.
Other than feeding time, she is a joy to be around. She is a happy baby and is content to lie on the floor and stare at the ceiling for hours. She loves the ceiling fan and will continue to keep her eyes fixed on it even while you are moving her around. She doesn't like to sleep when things are going on around her, so putting her in her crib is the best way to get her to sleep. Even then, she sometimes lies in bed and stares at the mobile or the wall.
A few weeks ago, my parents and sister came in for a visit. It was an enjoyable visit! They all got to spend some quality time holding Emily and giving Dawn and I a break from the routine. We even got to go out for dinner, which was very nice. I would say that Emily was on her best behavior for them, but they got to see her at her worst also. If you spend enough time with her, you get to see the good and the bad. Again, it is mostly around feeding time when she is at her worst...then again, there is bath time also!
We had a very relaxing Christmas. We didn't go to Rhode Island as we usually do, for obvious reasons. We started a new tradition with Emily. We read the first two chapters of Luke as a family and focused on the true meaning of Christmas. Although we know she didn't understand, we explained to her (As we will every year) why we celebrate Christmas and how God gave her the best gift she will ever receive when He sent His Son in the form of a baby in a manger. The story does not stop there, but continues to the cross at Easter, which will be one of our next traditions. Most of the day was spent relaxing and watching TV. We are huge LOST fans and we bought the third season on DVD and have been watching it over the past week. We are looking forward to the new season which starts at the end of January...
Speaking of January, can you believe that it is almost a new year again? It was this time last year that Dawn and I were discussing our going into the mission field for two years. We would be there right now if Dawn had not gotten pregnant. It is amazing how things can change so quickly. Dawn will be going back to work in a few weeks and I will be a stay at home dad. This will be the temporary situation until I can find the job that God is preparing for me. We would love to stay here in Shepherdsville, but we are willing and able to go wherever He leads us.
Dawn is not really looking forward to going back to work, as you can imagine. The hardest part will be working from home and having me and Emily in the next room. If Emily is crying, Dawn's motherly instincts will kick in and she will want to intervene. I am fine listening to her cry much longer than Dawn is; especially when putting her to bed.
As I prepare to depart, I would like to thank all of those who have contributed to the "Hoodies for the Homeless" as it was called. I was able to gather and purchase 67 hooded sweatshirts and I will be delivering them to the homeless shelter by the end of the week. I reached my goal and it was only through the help of a multitude of people. I appreciate all you did and I am sure that the people who receive them will appreciate the gift also; as well as the warmth it provides.
I hope you all had a great Christmas and are preparing for a joyful new year. Feel free to reply and let us know how your Christmas was.
We love you all and appreciate all your continued prayers and support.
Mike
Eph 2:4-7
I know that it has been a while since we have sent out an update, but there has not been much change with Emily and we have been a little busy.
First, I would like to mention that Emily got her feeding tube changed to the button last week. I would like to say that things with her feedings have changed, but the change is small. She has the ability to push gas out a lot easier, but she is still having trouble with gas. It takes about 45 minutes to an hour to feed her and she is crying for the better part of it. With the button, it is easier for her to push out the food, so when she cries, everything that she has just eaten, comes right back out. It gets a little frustrating!
We are supposed to meet with a nutritionist, but with the holiday season, everything is being delayed more than we would like. We feel that if we changed her formula or something about the way she eats, she would be better off, but we won't know what to do until we meet with her.
Other than feeding time, she is a joy to be around. She is a happy baby and is content to lie on the floor and stare at the ceiling for hours. She loves the ceiling fan and will continue to keep her eyes fixed on it even while you are moving her around. She doesn't like to sleep when things are going on around her, so putting her in her crib is the best way to get her to sleep. Even then, she sometimes lies in bed and stares at the mobile or the wall.
A few weeks ago, my parents and sister came in for a visit. It was an enjoyable visit! They all got to spend some quality time holding Emily and giving Dawn and I a break from the routine. We even got to go out for dinner, which was very nice. I would say that Emily was on her best behavior for them, but they got to see her at her worst also. If you spend enough time with her, you get to see the good and the bad. Again, it is mostly around feeding time when she is at her worst...then again, there is bath time also!
We had a very relaxing Christmas. We didn't go to Rhode Island as we usually do, for obvious reasons. We started a new tradition with Emily. We read the first two chapters of Luke as a family and focused on the true meaning of Christmas. Although we know she didn't understand, we explained to her (As we will every year) why we celebrate Christmas and how God gave her the best gift she will ever receive when He sent His Son in the form of a baby in a manger. The story does not stop there, but continues to the cross at Easter, which will be one of our next traditions. Most of the day was spent relaxing and watching TV. We are huge LOST fans and we bought the third season on DVD and have been watching it over the past week. We are looking forward to the new season which starts at the end of January...
Speaking of January, can you believe that it is almost a new year again? It was this time last year that Dawn and I were discussing our going into the mission field for two years. We would be there right now if Dawn had not gotten pregnant. It is amazing how things can change so quickly. Dawn will be going back to work in a few weeks and I will be a stay at home dad. This will be the temporary situation until I can find the job that God is preparing for me. We would love to stay here in Shepherdsville, but we are willing and able to go wherever He leads us.
Dawn is not really looking forward to going back to work, as you can imagine. The hardest part will be working from home and having me and Emily in the next room. If Emily is crying, Dawn's motherly instincts will kick in and she will want to intervene. I am fine listening to her cry much longer than Dawn is; especially when putting her to bed.
As I prepare to depart, I would like to thank all of those who have contributed to the "Hoodies for the Homeless" as it was called. I was able to gather and purchase 67 hooded sweatshirts and I will be delivering them to the homeless shelter by the end of the week. I reached my goal and it was only through the help of a multitude of people. I appreciate all you did and I am sure that the people who receive them will appreciate the gift also; as well as the warmth it provides.
I hope you all had a great Christmas and are preparing for a joyful new year. Feel free to reply and let us know how your Christmas was.
We love you all and appreciate all your continued prayers and support.
Mike
Eph 2:4-7
January 2, 2008 - 2007: What a year!
Hello all,
As we begin a new year, I have taken some time to reflect on the past year. Bear with me as I do some reminiscing… At the start of January 2007, Mike and I thought we had our year planned out. He was about to begin his last semester of seminary. We were going to apply to the International Mission Board in May and by December we would leave for a 2-3 year assignment abroad. Little did we know that God had something else in store for us.
On 1/31, we found out that I was pregnant. After 3 ½ years trying to conceive, we had just about given up. Needless to say, it took a few days for the shock to wear off for both of us. We thanked God for the way that He would knit this child together in my womb. And we quickly began dreaming about who he/she would be. Who would he/she resemble? Would this child be smart, funny, athletic and more importantly would they grow to know and love God? Would we be good parents? We trusted that God knew what kind of life he/she would lead and that He would equip us to be the parents that we needed to be.
Well, the pregnancy had very few complications (unless you count the first trimester when I spent much of my time hugging the bowl or my misery during the HOTTEST summer ever in Kentucky history - at least it felt that way to me!). When we thought about how each part of our child was being formed in the womb, we could not help but praise God, the Creator of all things. God is so incredible! He designs each one of us personally as if we are clay in His hands. He cares about each and every one of us right down to the number of hairs on our heads. I am not sure why he cares how much hair is on my head, but I am thankful that He cares enough about me to consider every last detail. As my belly grew, we anxiously awaited the day that we would get to meet our daughter (we didn’t know what we were having, but Mike and I suspected all along that it would be a girl).
Along the way, we certainly had our share of fears. We both were terrified at the thought of parenthood. We knew it would be the toughest job that would ever come our way. And the idea of actually giving birth would keep me up at night (OK it really was the huge stomach and the inability to find a comfortable position, but still it was a scary prospect). We clung to the promise that God would not give us more than we could handle. And we knew that no matter what happened, He would be with us.
I can still remember waking Mike at midnight to tell him "it was time". He stared at me as if I was trying to be funny and doing a terrible job. I woke up at 11 wondering if my water had broken & had already talked to the doctor. So I convinced him that I was serious and we really did need to go to the hospital. Thus began the 21 hour wait for Emily's arrival. I will admit that when she finally arrived, I was a bit dazed and definitely exhausted. When they told us that she was not breathing, I think I stopped breathing too. It felt like an eternity had passed before they got her breathing and put her in my arms. I only got to hold her for about 5 minutes before they took her to the nursery to keep an eye on her. At that point, I was given some heavy duty drugs and the rest of that night was a blur.
The next morning, the nurse came to take me to the nursery to see my baby girl. I was excited and I remember chatting with the nurse and Mike as I tried to make my way to the wheel chair. The next thing I remember I woke up in bed with a lot of people staring at me. Apparently I had fainted! So Mike went by himself to see her while I rested and had some breakfast (just about the first thing I had eaten in 36 hours!). Not long after Mike came back from visiting her in the nursery, we were told that Emily was going to be taken to a children's hospital. She had some seizures overnight and wanted to get her to a hospital that was better equipped to handle anything else that might come up. On her way out, they took her by my room. So I got to spend about 5 more minutes with her before she was taken across town.
This began a six week journey in the NICU. This was certainly not the experience I had expected for the birth of our first child. When I had fears about labor I worried about the pain I would experience and the possibility of a c-section, but never imagined that my little girl would have such problems. But this was the journey that God had chosen for us long before I ever got pregnant. He was not surprised when Emily was not breathing at birth. He knew that she would spend 6 weeks in the NICU and that she would be diagnosed with cerebral palsy. He also knows exactly what she will turn out to be.
As we have adjusted to parenthood and Emily's diagnosis, our dreams for her have changed a bit. It is not that we don't expect great things for her, because we certainly do. The thing that has changed for us is that we will more thankful for everything that she will be able to do. We now dream of feeding her without pain and discomfort and then one day feeding her by mouth so she can let us know what tastes are her favorites. We dream of hearing her talk and one day saying “Mom” or “Dad” or “I love you”. And we dream of seeing her walk. We are not sure if she will ever be able to do these things; so if/when they happen, we will be especially thankful!
Every day we thank God for blessing us with a beautiful little girl; for counting us worthy to be her parents; and for giving us strength to get through each challenge. He certainly did not give us an easy road to travel (not that parenthood is EVER an easy road), but He has been with us through so many trials in the past and we know that He will be with us for every challenge in our future. We are excited to see what He has planned for Emily’s life. We are anxious to see what kinds of challenges she will overcome and the lives that she will touch.
This year we have gotten some mixed reviews from doctors. Our meeting with the neonatologist made us feel like she would not accomplish very much in her life. They evaluated her skills in the following areas: cognitive, communication, motor, social-emotional and adaptive development and rated her below average in every one. We met with a therapist who works with visually impaired children and she was very impressed with Emily. She said that she did not expect much based on the report that she read (written by the neonatologist’s office). Then we met with a neurologist and he told us about how her brain can “re-wire” to compensate for the damage that has been done. So he is optimistic about what she will be able to do. The bottom line is the doctors CANNOT predict the future. They have no idea what she will or will not do. God has already determined what Emily’s future will hold and we trust in Him not the “words of wisdom” from well-meaning doctors. Luckily Emily has no idea that some have set limits on her already. As she grows and develops, Mike and I will encourage her to work hard and push herself to reach her highest potential. We will teach her about God, who loves her and created her in His image. We will let her know that with Him there are no limits to what she can achieve.
So this year we have been blessed beyond measure. We have a beautiful baby girl who brings us joy each and every day. We have loving families who have offered support in so many ways. We have great friends who have prayed for us, cried with us and laughed with us. And we have an incredible church family that has shown us love in countless ways. The year did not turn out the way we planned - it was so much better! We cannot wait to see what God has planned for us in 2008.
In HIS Strength,
Dawn
PS - Enjoy a couple photos of Emily. We have been trying to catch some of her funny faces on film!
As we begin a new year, I have taken some time to reflect on the past year. Bear with me as I do some reminiscing… At the start of January 2007, Mike and I thought we had our year planned out. He was about to begin his last semester of seminary. We were going to apply to the International Mission Board in May and by December we would leave for a 2-3 year assignment abroad. Little did we know that God had something else in store for us.
On 1/31, we found out that I was pregnant. After 3 ½ years trying to conceive, we had just about given up. Needless to say, it took a few days for the shock to wear off for both of us. We thanked God for the way that He would knit this child together in my womb. And we quickly began dreaming about who he/she would be. Who would he/she resemble? Would this child be smart, funny, athletic and more importantly would they grow to know and love God? Would we be good parents? We trusted that God knew what kind of life he/she would lead and that He would equip us to be the parents that we needed to be.
Well, the pregnancy had very few complications (unless you count the first trimester when I spent much of my time hugging the bowl or my misery during the HOTTEST summer ever in Kentucky history - at least it felt that way to me!). When we thought about how each part of our child was being formed in the womb, we could not help but praise God, the Creator of all things. God is so incredible! He designs each one of us personally as if we are clay in His hands. He cares about each and every one of us right down to the number of hairs on our heads. I am not sure why he cares how much hair is on my head, but I am thankful that He cares enough about me to consider every last detail. As my belly grew, we anxiously awaited the day that we would get to meet our daughter (we didn’t know what we were having, but Mike and I suspected all along that it would be a girl).
Along the way, we certainly had our share of fears. We both were terrified at the thought of parenthood. We knew it would be the toughest job that would ever come our way. And the idea of actually giving birth would keep me up at night (OK it really was the huge stomach and the inability to find a comfortable position, but still it was a scary prospect). We clung to the promise that God would not give us more than we could handle. And we knew that no matter what happened, He would be with us.
I can still remember waking Mike at midnight to tell him "it was time". He stared at me as if I was trying to be funny and doing a terrible job. I woke up at 11 wondering if my water had broken & had already talked to the doctor. So I convinced him that I was serious and we really did need to go to the hospital. Thus began the 21 hour wait for Emily's arrival. I will admit that when she finally arrived, I was a bit dazed and definitely exhausted. When they told us that she was not breathing, I think I stopped breathing too. It felt like an eternity had passed before they got her breathing and put her in my arms. I only got to hold her for about 5 minutes before they took her to the nursery to keep an eye on her. At that point, I was given some heavy duty drugs and the rest of that night was a blur.
The next morning, the nurse came to take me to the nursery to see my baby girl. I was excited and I remember chatting with the nurse and Mike as I tried to make my way to the wheel chair. The next thing I remember I woke up in bed with a lot of people staring at me. Apparently I had fainted! So Mike went by himself to see her while I rested and had some breakfast (just about the first thing I had eaten in 36 hours!). Not long after Mike came back from visiting her in the nursery, we were told that Emily was going to be taken to a children's hospital. She had some seizures overnight and wanted to get her to a hospital that was better equipped to handle anything else that might come up. On her way out, they took her by my room. So I got to spend about 5 more minutes with her before she was taken across town.
This began a six week journey in the NICU. This was certainly not the experience I had expected for the birth of our first child. When I had fears about labor I worried about the pain I would experience and the possibility of a c-section, but never imagined that my little girl would have such problems. But this was the journey that God had chosen for us long before I ever got pregnant. He was not surprised when Emily was not breathing at birth. He knew that she would spend 6 weeks in the NICU and that she would be diagnosed with cerebral palsy. He also knows exactly what she will turn out to be.
As we have adjusted to parenthood and Emily's diagnosis, our dreams for her have changed a bit. It is not that we don't expect great things for her, because we certainly do. The thing that has changed for us is that we will more thankful for everything that she will be able to do. We now dream of feeding her without pain and discomfort and then one day feeding her by mouth so she can let us know what tastes are her favorites. We dream of hearing her talk and one day saying “Mom” or “Dad” or “I love you”. And we dream of seeing her walk. We are not sure if she will ever be able to do these things; so if/when they happen, we will be especially thankful!
Every day we thank God for blessing us with a beautiful little girl; for counting us worthy to be her parents; and for giving us strength to get through each challenge. He certainly did not give us an easy road to travel (not that parenthood is EVER an easy road), but He has been with us through so many trials in the past and we know that He will be with us for every challenge in our future. We are excited to see what He has planned for Emily’s life. We are anxious to see what kinds of challenges she will overcome and the lives that she will touch.
This year we have gotten some mixed reviews from doctors. Our meeting with the neonatologist made us feel like she would not accomplish very much in her life. They evaluated her skills in the following areas: cognitive, communication, motor, social-emotional and adaptive development and rated her below average in every one. We met with a therapist who works with visually impaired children and she was very impressed with Emily. She said that she did not expect much based on the report that she read (written by the neonatologist’s office). Then we met with a neurologist and he told us about how her brain can “re-wire” to compensate for the damage that has been done. So he is optimistic about what she will be able to do. The bottom line is the doctors CANNOT predict the future. They have no idea what she will or will not do. God has already determined what Emily’s future will hold and we trust in Him not the “words of wisdom” from well-meaning doctors. Luckily Emily has no idea that some have set limits on her already. As she grows and develops, Mike and I will encourage her to work hard and push herself to reach her highest potential. We will teach her about God, who loves her and created her in His image. We will let her know that with Him there are no limits to what she can achieve.
So this year we have been blessed beyond measure. We have a beautiful baby girl who brings us joy each and every day. We have loving families who have offered support in so many ways. We have great friends who have prayed for us, cried with us and laughed with us. And we have an incredible church family that has shown us love in countless ways. The year did not turn out the way we planned - it was so much better! We cannot wait to see what God has planned for us in 2008.
In HIS Strength,
Dawn
PS - Enjoy a couple photos of Emily. We have been trying to catch some of her funny faces on film!
January 23, 2008 - The Latest News
Hello y'all,
I know that it has been some time since you last heard from me and I'm sorry. There have been many developments in the past month; I don't know where to begin.
Emily is now three months old and we finally have a team of people working for her best interest. We have met with a Physical Therapist, a Nutritionist, and a Speech Therapist. We have a meeting next Tuesday to discuss what her daily routine is going to look like and each one of them have given us something to work on in the mean time.
The major problem Emily has had since she came home from the hospital has been her feeding. We have been struggling with the bureaucracy, trying to get the nutritionist here as soon as possible. We met with her today and we finally have a game plan to help her with her feeding. She agrees with us that the problem is more than the food that she is eating. She has suggested, and we have agreed, that she needs a second opinion about her digestive track. We have changed her food two times in the last week and there has been a difference in her bowel movements, but not in her pain during the feedings. We will be making an appointment to see a specialist sometime this week. This requires a trip to the Cincinnati Children's Hospital in Ohio (about 2 hours away) but if it gets us the help we need, it will be worth it.
For now, the nutritionist has given us a prescription for a feeding pump which will allow us to feed her over a longer period of time. We will be able to put her to bed at 11:00 pm and she will get the equivalent of three feedings through the course of the night, ending at 9:00 am. Because she will be getting the food over a longer time, it will give her body the time it needs to digest it at a steady pace instead of getting a stomach full at once. We will also be able to give her less food at the other three feedings, making her stomach less full and thus less irritable.
God willing, we will receive the pump tomorrow and can begin this process tomorrow evening. I can't begin to tell you how excited I am that I won't have to get up at 1:00 to feed her. Most of the time she is more awake for this feeding than I am! Dawn won't even have to get up to do the 5:00 am feeding, so she is excited also.
Things are getting better, albeit very slowly.
Last week we had our three month appointment with the pediatrician. I basically bombarded the doctor with questions. Having seen the Physical Therapist and the Speech Therapist in the mean time, they asked me questions that I could not answer and she was the one who could tell me all the answers.
Emily has a large bump on her head where two of the bones meet and there is a fear that they are not growing together correctly. As with everything else, it may be too early to tell, but if there is something wrong, we need to be proactive about it. So, we can add one more doctor to our long list of doctor appointments. This one is a Plastic Surgeon! She is three months old and is considering plastic surgery. She is going to be one beautiful baby! On a similar note, she has a birth mark on her neck that seems to be getting bigger. It looks like a bruise that keeps on growing. The doctor said that they usually get bigger before they get smaller, but because it is on her neck, it may be interfering with her head movement. This is another case for the plastic surgeon. Since we are already going for the head, we will have him look at this also. Our appointment is on February 21st, so we won't know anything till then.
So...Dawn and I are glad that things seem to be coming together, but as always, only time will tell how things are really going to progress. She still isn't taking any food from a bottle, but we are working on it and by the grace of God, she will gradually improve in this area. One good thing is that because all her food is taken through the tube, her formula can be paid for by the insurance company. I don't know the reason, but at $7 a day, I will take the savings. As it is, we are getting bills from doctors almost daily. For such a little woman, she sure gets expensive.
I guess that is all for now. I am sure there is something that I forgot, but I have given you plenty to pray for. Our biggest concern now will be meeting with a doctor in Cincinnati and seeing what they can discover about her. Our hope is they can come to some conclusion about what the REAL problem is.
Thank you for all your continued prayers and support. There is no way we can thank you all for the love and prayers that seem to be continually coming our way. God is good and we know that Emily is going to have the best life she can because we are continually being blessed in so many different ways.
All for HIS glory,
Mike
Eph 2:4-7
I know that it has been some time since you last heard from me and I'm sorry. There have been many developments in the past month; I don't know where to begin.
Emily is now three months old and we finally have a team of people working for her best interest. We have met with a Physical Therapist, a Nutritionist, and a Speech Therapist. We have a meeting next Tuesday to discuss what her daily routine is going to look like and each one of them have given us something to work on in the mean time.
The major problem Emily has had since she came home from the hospital has been her feeding. We have been struggling with the bureaucracy, trying to get the nutritionist here as soon as possible. We met with her today and we finally have a game plan to help her with her feeding. She agrees with us that the problem is more than the food that she is eating. She has suggested, and we have agreed, that she needs a second opinion about her digestive track. We have changed her food two times in the last week and there has been a difference in her bowel movements, but not in her pain during the feedings. We will be making an appointment to see a specialist sometime this week. This requires a trip to the Cincinnati Children's Hospital in Ohio (about 2 hours away) but if it gets us the help we need, it will be worth it.
For now, the nutritionist has given us a prescription for a feeding pump which will allow us to feed her over a longer period of time. We will be able to put her to bed at 11:00 pm and she will get the equivalent of three feedings through the course of the night, ending at 9:00 am. Because she will be getting the food over a longer time, it will give her body the time it needs to digest it at a steady pace instead of getting a stomach full at once. We will also be able to give her less food at the other three feedings, making her stomach less full and thus less irritable.
God willing, we will receive the pump tomorrow and can begin this process tomorrow evening. I can't begin to tell you how excited I am that I won't have to get up at 1:00 to feed her. Most of the time she is more awake for this feeding than I am! Dawn won't even have to get up to do the 5:00 am feeding, so she is excited also.
Things are getting better, albeit very slowly.
Last week we had our three month appointment with the pediatrician. I basically bombarded the doctor with questions. Having seen the Physical Therapist and the Speech Therapist in the mean time, they asked me questions that I could not answer and she was the one who could tell me all the answers.
Emily has a large bump on her head where two of the bones meet and there is a fear that they are not growing together correctly. As with everything else, it may be too early to tell, but if there is something wrong, we need to be proactive about it. So, we can add one more doctor to our long list of doctor appointments. This one is a Plastic Surgeon! She is three months old and is considering plastic surgery. She is going to be one beautiful baby! On a similar note, she has a birth mark on her neck that seems to be getting bigger. It looks like a bruise that keeps on growing. The doctor said that they usually get bigger before they get smaller, but because it is on her neck, it may be interfering with her head movement. This is another case for the plastic surgeon. Since we are already going for the head, we will have him look at this also. Our appointment is on February 21st, so we won't know anything till then.
So...Dawn and I are glad that things seem to be coming together, but as always, only time will tell how things are really going to progress. She still isn't taking any food from a bottle, but we are working on it and by the grace of God, she will gradually improve in this area. One good thing is that because all her food is taken through the tube, her formula can be paid for by the insurance company. I don't know the reason, but at $7 a day, I will take the savings. As it is, we are getting bills from doctors almost daily. For such a little woman, she sure gets expensive.
I guess that is all for now. I am sure there is something that I forgot, but I have given you plenty to pray for. Our biggest concern now will be meeting with a doctor in Cincinnati and seeing what they can discover about her. Our hope is they can come to some conclusion about what the REAL problem is.
Thank you for all your continued prayers and support. There is no way we can thank you all for the love and prayers that seem to be continually coming our way. God is good and we know that Emily is going to have the best life she can because we are continually being blessed in so many different ways.
All for HIS glory,
Mike
Eph 2:4-7
January 31, 2008 - A very hectic week!
Hello all,
This has been one crazy week!
For those who heard that there was a tornado in Louisville, not to worry, we are no longer in Louisville. The brunt of it hit 20 miles away. It hit Tuesday night and last night there were still 15,000 people who did not have electricity.
Our crazy week actually started more than a week ago on Saturday the 19th. Dawn woke up with a sore back and as the day went on it got worse. Needless to say, we didn’t do too much that day, but worse than that, by Sunday she couldn’t move. She spent the weekend relaxing and taking it easy and by the end of Sunday she was feeling a little better. It went away in another day or two and she is doing much better now. This was just the beginning of our eventful week.
On Tuesday we finally had our long awaited appointment with the nutritionist and things went well. I had arranged it so that I would be feeding Emily at the time she came. It was a great plan and she was able to see that at the beginning of the feeding, Emily began to fuss and this continued throughout the feeding. She was able to come up with some solutions to try and put things in the works for us to get a pump that will feed her slowly and gradually through the night instead of getting three feedings with several ounces at once. We are to give her a greater amount of food during the night and we can give her smaller portions during the day, making it easier to digest.
It seems that whenever we change something in Emily’s diet, she improves for a day, and then it gets worse again. The pump was no exception. But I will get back to that in a minute because we didn’t get the pump until Saturday.
On Thursday, I fed her at 9:00 am as usual and everything went well. I put her on her tummy for “Tummy time” and she actually stayed there for quite a while before she got uncomfortable. The real problem didn’t occur until it was time for the 1:00 pm feeding. I got her food ready and went to insert the tube when I realized it wasn’t there. At first this confused me before I realized it had fallen out. For the past week I had been saying that I needed to check the level of fluid in the balloon that holds it in place, but I never got to it. Well, as you probably guessed by now, the balloon shrunk enough that it was not able to stay in for tummy time.
It must have fallen out closer to 10:00 than 1:00 because I couldn’t see the hole that the tube goes into because it had closed over. This automatically meant a trip to the Emergency Room. I won’t go into all the details of the ER because I could write a book on that one day! I will just say that the last time we were there they spent an hour and a half trying to get an IV in, and Emily did not enjoy it AT ALL. I told them when I got there that she was NOT getting an IV under any circumstance and after three and a half hours of waiting they informed me the surgeon would not be out for another hour and Emily would need an IV so she didn’t dehydrate. I lost it and fought hard for my little girl. I won and after a total of 4.5 hours we left the hospital vowing never to return for a G-tube replacement. I watched closely so I could do it next time it falls out.
It was a very long and stressful day and I was looking forward to a good nights sleep. What I didn’t realize is that I was going to wake up in at 4:30 in the morning doubled over in pain. I got up to go to the bathroom and when I got back into bed, I couldn’t lie down. Dawn was asking me what was wrong, but I was in so much pain that I couldn’t reply. Not long after that, I ran to the bathroom and tossed my cookies; as I did three more times in the next fifteen minutes. Needless to say, we went to the ER and got me some serious drugs as quickly as we could. I had a kidney stone! If you have never had one…trust me, you don’t want one. If you have had one, you know what I mean. So I pretty much spent Friday in bed, although I did have to run some errands in the afternoon. I was told in the ER that the stone had moved past the painful point and it should remove itself within a day or so. I will just say that it did pass and the drugs worked wonders!
Saturday was a new day and it started off with a men’s breakfast at my church that I was running. It was planned for my Sunday school class and there were a total of six of us there. As usual, I made too much food. I blame my mom for that. She taught me it is better to have too much than not enough. After our meal, we had a good chat and I look forward to doing it on a regular basis.
Upon arriving home, my wife informed me that we had an appointment at the Pediatrician in an hour. We had changed Emily’s formula three times in two weeks trying to find a more digestible solution and in the process she had gotten a good case of diarrhea which caused a diaper rash that had gotten pretty nasty looking. So, here we are again in the doctor’s office…three times in three days! The solution was a very expensive ointment and some “butt paste.” Changing her diaper became a long drawn out task. This came back to haunt us on Sunday morning, but I’ll get to that later.
After the Dr’s visit, we had a gentleman come over and deliver the feeding pump and give us some instructions on how to use it. Instead of getting three feedings at 9 pm, 1 am and 5 am, she will get one continuous feeding of 400 cc’s at 40 cc’s an hour for ten hours. She will then get three other feeding of 90 cc’s throughout the day. She was getting 110 cc’s six times a day. This meant that we could sleep through the night and not have to get up to feed her. I was doing the 1 am feeding and Dawn was doing the 5 am feeding. Finally, all three of us could sleep through the night…ideally.
As per usual, the first 24 hours went well. She slept through the night and the food went in with no problems. We woke her up at around 9:30 and planned on going to church at 10:30. I changed her diaper and it was empty, but I wanted to reapply the creams. As I went through the long process of wiping, applying one lotion and then the other, she peed. I started over and so did she. SIX diapers later she was finally changed and the lotions were applied!
We vowed that we would do everything in our power to avoid Dr’s for at least one day and enjoyed the rest of our day.
Sunday night we put Emily to bed and set up the pump to go through the night. It resembles an IV stand that you see in the hospital and has clamps at various points to stop the flow if needed. I filled the bag and set up the pump and went back to watch TV for an hour. She was a little fussy about fifteen minutes later, but we let her cry it out. It didn’t take long for her to stop so we didn’t think anything about it…until we went to bed. I was lying in bed and looking at the tube in the dark. Something looked wrong. When Dawn came to bed, I asked her to check it. I had neglected to release one of the clamps and a valve had popped and spilled formula into a puddle all over Emily. She was sleeping nicely in a puddle of formula. In the process of changing her sheet, mattress cover and her clothes, she woke up! So much fun!!! It was a long night for all of us.
Her feeding on Monday became a struggle again; so the saga continues. At the meeting with the nutritionist on Tuesday, she mentioned going to a GI doctor. At the pediatrician on Saturday, we asked her about it and she set up an appointment for this Wednesday. But on to Tuesday first…
Tuesday was a big day for us because we finally got our meeting with all the therapists and made a schedule for Emily’s visits. They will all be calling me within a few days and setting up appointments. We know that tomorrow the PT starts and we will meet with the nutritionist in a month, although we are still in constant contact with her. Emily will have her eyes checked once a month and her speech therapy will come once a week to work on her mouth feeding. It is finally all coming together…two months later.
Yesterday I met with the GI doctor. We had a huge storm here on Tuesday night and the doctor’s office didn’t have power. Fortunately, there were many windows and the doctor didn’t need any instruments that required electricity. She asked a lot of questions and scheduled an appointment at Kosair Children’s Hospital for an Upper GI. This will take place next Thursday and hopefully give us a better picture of what is going on in her tummy.
Through all this I have been going back and forth with a marketing person putting together a brochure for my summer camp that I am planning. I have rejected about ten different logos, but finally agreed on one. We go to print today and I will get some of them tomorrow. There is a conference at Southern Seminary this weekend and I am supposed to have a booth there to start my marketing. God willing, all will go well and I will get some reservations. I have put together a website and soon I will have all the kinks worked out of it. My time has been so full between the camp and taking care of Emily that I have not had time to look for a job, which is what I really want to do. God’s timing is not my timing and I trust that all things will work out in the end. I am where I need to be for now and when things calm down here, He will open an opportunity that will be perfect for me.
I have rambled WAAYY too long! Just know that although things here are very hectic, we are still praising God for all He is doing in our lives. He is in control and we are just His humble servants willing to do whatever He wants and go wherever He leads. He wants us right here for now, and we accept that.
We love you all and look forward to hearing about how things are going in your lives.
All for HIS glory,
Mike
Eph 2:4-7
This has been one crazy week!
For those who heard that there was a tornado in Louisville, not to worry, we are no longer in Louisville. The brunt of it hit 20 miles away. It hit Tuesday night and last night there were still 15,000 people who did not have electricity.
Our crazy week actually started more than a week ago on Saturday the 19th. Dawn woke up with a sore back and as the day went on it got worse. Needless to say, we didn’t do too much that day, but worse than that, by Sunday she couldn’t move. She spent the weekend relaxing and taking it easy and by the end of Sunday she was feeling a little better. It went away in another day or two and she is doing much better now. This was just the beginning of our eventful week.
On Tuesday we finally had our long awaited appointment with the nutritionist and things went well. I had arranged it so that I would be feeding Emily at the time she came. It was a great plan and she was able to see that at the beginning of the feeding, Emily began to fuss and this continued throughout the feeding. She was able to come up with some solutions to try and put things in the works for us to get a pump that will feed her slowly and gradually through the night instead of getting three feedings with several ounces at once. We are to give her a greater amount of food during the night and we can give her smaller portions during the day, making it easier to digest.
It seems that whenever we change something in Emily’s diet, she improves for a day, and then it gets worse again. The pump was no exception. But I will get back to that in a minute because we didn’t get the pump until Saturday.
On Thursday, I fed her at 9:00 am as usual and everything went well. I put her on her tummy for “Tummy time” and she actually stayed there for quite a while before she got uncomfortable. The real problem didn’t occur until it was time for the 1:00 pm feeding. I got her food ready and went to insert the tube when I realized it wasn’t there. At first this confused me before I realized it had fallen out. For the past week I had been saying that I needed to check the level of fluid in the balloon that holds it in place, but I never got to it. Well, as you probably guessed by now, the balloon shrunk enough that it was not able to stay in for tummy time.
It must have fallen out closer to 10:00 than 1:00 because I couldn’t see the hole that the tube goes into because it had closed over. This automatically meant a trip to the Emergency Room. I won’t go into all the details of the ER because I could write a book on that one day! I will just say that the last time we were there they spent an hour and a half trying to get an IV in, and Emily did not enjoy it AT ALL. I told them when I got there that she was NOT getting an IV under any circumstance and after three and a half hours of waiting they informed me the surgeon would not be out for another hour and Emily would need an IV so she didn’t dehydrate. I lost it and fought hard for my little girl. I won and after a total of 4.5 hours we left the hospital vowing never to return for a G-tube replacement. I watched closely so I could do it next time it falls out.
It was a very long and stressful day and I was looking forward to a good nights sleep. What I didn’t realize is that I was going to wake up in at 4:30 in the morning doubled over in pain. I got up to go to the bathroom and when I got back into bed, I couldn’t lie down. Dawn was asking me what was wrong, but I was in so much pain that I couldn’t reply. Not long after that, I ran to the bathroom and tossed my cookies; as I did three more times in the next fifteen minutes. Needless to say, we went to the ER and got me some serious drugs as quickly as we could. I had a kidney stone! If you have never had one…trust me, you don’t want one. If you have had one, you know what I mean. So I pretty much spent Friday in bed, although I did have to run some errands in the afternoon. I was told in the ER that the stone had moved past the painful point and it should remove itself within a day or so. I will just say that it did pass and the drugs worked wonders!
Saturday was a new day and it started off with a men’s breakfast at my church that I was running. It was planned for my Sunday school class and there were a total of six of us there. As usual, I made too much food. I blame my mom for that. She taught me it is better to have too much than not enough. After our meal, we had a good chat and I look forward to doing it on a regular basis.
Upon arriving home, my wife informed me that we had an appointment at the Pediatrician in an hour. We had changed Emily’s formula three times in two weeks trying to find a more digestible solution and in the process she had gotten a good case of diarrhea which caused a diaper rash that had gotten pretty nasty looking. So, here we are again in the doctor’s office…three times in three days! The solution was a very expensive ointment and some “butt paste.” Changing her diaper became a long drawn out task. This came back to haunt us on Sunday morning, but I’ll get to that later.
After the Dr’s visit, we had a gentleman come over and deliver the feeding pump and give us some instructions on how to use it. Instead of getting three feedings at 9 pm, 1 am and 5 am, she will get one continuous feeding of 400 cc’s at 40 cc’s an hour for ten hours. She will then get three other feeding of 90 cc’s throughout the day. She was getting 110 cc’s six times a day. This meant that we could sleep through the night and not have to get up to feed her. I was doing the 1 am feeding and Dawn was doing the 5 am feeding. Finally, all three of us could sleep through the night…ideally.
As per usual, the first 24 hours went well. She slept through the night and the food went in with no problems. We woke her up at around 9:30 and planned on going to church at 10:30. I changed her diaper and it was empty, but I wanted to reapply the creams. As I went through the long process of wiping, applying one lotion and then the other, she peed. I started over and so did she. SIX diapers later she was finally changed and the lotions were applied!
We vowed that we would do everything in our power to avoid Dr’s for at least one day and enjoyed the rest of our day.
Sunday night we put Emily to bed and set up the pump to go through the night. It resembles an IV stand that you see in the hospital and has clamps at various points to stop the flow if needed. I filled the bag and set up the pump and went back to watch TV for an hour. She was a little fussy about fifteen minutes later, but we let her cry it out. It didn’t take long for her to stop so we didn’t think anything about it…until we went to bed. I was lying in bed and looking at the tube in the dark. Something looked wrong. When Dawn came to bed, I asked her to check it. I had neglected to release one of the clamps and a valve had popped and spilled formula into a puddle all over Emily. She was sleeping nicely in a puddle of formula. In the process of changing her sheet, mattress cover and her clothes, she woke up! So much fun!!! It was a long night for all of us.
Her feeding on Monday became a struggle again; so the saga continues. At the meeting with the nutritionist on Tuesday, she mentioned going to a GI doctor. At the pediatrician on Saturday, we asked her about it and she set up an appointment for this Wednesday. But on to Tuesday first…
Tuesday was a big day for us because we finally got our meeting with all the therapists and made a schedule for Emily’s visits. They will all be calling me within a few days and setting up appointments. We know that tomorrow the PT starts and we will meet with the nutritionist in a month, although we are still in constant contact with her. Emily will have her eyes checked once a month and her speech therapy will come once a week to work on her mouth feeding. It is finally all coming together…two months later.
Yesterday I met with the GI doctor. We had a huge storm here on Tuesday night and the doctor’s office didn’t have power. Fortunately, there were many windows and the doctor didn’t need any instruments that required electricity. She asked a lot of questions and scheduled an appointment at Kosair Children’s Hospital for an Upper GI. This will take place next Thursday and hopefully give us a better picture of what is going on in her tummy.
Through all this I have been going back and forth with a marketing person putting together a brochure for my summer camp that I am planning. I have rejected about ten different logos, but finally agreed on one. We go to print today and I will get some of them tomorrow. There is a conference at Southern Seminary this weekend and I am supposed to have a booth there to start my marketing. God willing, all will go well and I will get some reservations. I have put together a website and soon I will have all the kinks worked out of it. My time has been so full between the camp and taking care of Emily that I have not had time to look for a job, which is what I really want to do. God’s timing is not my timing and I trust that all things will work out in the end. I am where I need to be for now and when things calm down here, He will open an opportunity that will be perfect for me.
I have rambled WAAYY too long! Just know that although things here are very hectic, we are still praising God for all He is doing in our lives. He is in control and we are just His humble servants willing to do whatever He wants and go wherever He leads. He wants us right here for now, and we accept that.
We love you all and look forward to hearing about how things are going in your lives.
All for HIS glory,
Mike
Eph 2:4-7
February 17, 2008 - A Round of the Flu
Hello all,
It has been a few weeks since our last email and I thought I would give you the latest. The funny thing is that the last few weeks have been uneventful.
I will start off with our hospital visit for Emily's upper GI exam. I didn't realize it was going to take all day! I was told to stop her feeding at 5:00 am and that she could have nothing but water until the test. I arrived at 8:30 am and was quickly put through the line of paperwork and forms. Within 45 minutes, we were in the room where it all begins. The nurse must have been a rodeo wrangler in a previous life (Although I don't believe in the whole "previous life" thing, it makes the story more funny). Within seconds she had Emily undressed and strapped into a contraption that had her head secured and five different straps holding the rest of her body in place. Her hands were strapped above her head and she looked totally uncomfortable. Needless to say, she was not happy and everyone in the hospital knew it.
The nurse then prepared a bottle of this thick white formula. She was surprised when I told her that she won't take the bottle, but was relieved when I pulled out a tube from my diaper bag. The doctor came in and quickly injected about 60cc's of this liquid into Emily's stomach. One of the keys to feeding Emily is to go slow, so this was a huge mistake. Emily was again crying her little lungs out. As she cried, I learned the reason for all the straps. The x-ray machine showed her stomach and all the fluid that was injected into it, but the machine didn't move vertically, so Emily did. It was like a rotisserie. They were turning her like a chicken over a flame; looking at her stomach from every direction.
About twenty minutes later, they finished and I mentioned to the doctor that she needs to release some of the formula or she will dry heave. She removed about 30cc's and Emily was fine. Then for the next four hours, Emily had to get an x-ray every 30 minutes. Thank God she only had to lie flat for these x-rays and they only took a total of three minutes each; but it was a long day! Emily was extremely well behaved all day and only had one crying fit that lasted about 10 minutes. The rest of the day she was happy to lie in her car seat or on her dad's lap. God is SO good!
After we had our last x-ray, we then had to go have some blood drawn. Keep in mind that she hadn't eaten since 5:00 am with the exception of the white stuff that they gave her. She was a little hungry (and so was I) and a little dehydrated. The first nurse tried twice to find a vein with no success and quickly turned it over to a more experienced nurse. She was able to get it on the first try and made it seem effortless. She was a God-send! Emily is not a fan of having needles stuck in her arm and, as I mentioned in my last email, I fight with all of my might to avoid it; although this time it was necessary.
The initial results from the test came back negative, meaning there is nothing wrong with her digestive track. We are still waiting for the results from the blood and urine test (I will spare you the details of the urine test...although very funny). We really don't think that they are going to find anything there, but better safe than sorry.
As I was talking with the doctor a few weeks ago, the problem is that she can't burp. This means that she has no way to release gas except by passing it through her entire system. The problem we are having is that it causes her pain during the last foot or so of its exit. She will usually cry uncontrollably until it passes. This is what we are trying to avoid. One solution that the doctor gave us was to have the nissen loosened. This is the surgery that tied her stomach around her esophagus to stop her from having reflux. Her thinking is that if we loosen the nissen, she will be able to burp and the problem will stop. Other problems occur, though. First, in order to do this...it IS a surgery! We don't know that we are ready to do another surgery on this poor little girl. The second thing is that it may not stop the problem, but may actually cause the reflux to come back. These are all bad things in my book. Why do something that may make things worse? We won't!
So where are we now?! This past week has been challenging for a different reason. Dawn started having flu symptoms about two weeks ago, and then Emily started about a week ago and then me shortly after that! Dawn is pretty much recovered and feeling better, but me and Emily are still in the suffering stage. She is continually coughing and has some breathing issues, I have a runny nose and I am run down 24/7. We are trying to get our rest and take our drugs to get better quick, but we will always welcome some prayer in this area.
We have started meeting with all the therapists in the past few weeks. We are meeting with the Speech Therapist once a week, Physical Therapy every other week and Vision and Nutrition once a month. Emily has been sick, so we haven't pushed her too hard. As a matter of fact, she had a meltdown when the Speech Therapist was here so we didn't get to do anything.
This week we have our appointment with the plastic surgeon. We are going to find out about the birth mark on her neck and the crease in her skull. God willing, there are no problems and these things will work themselves out naturally, but we will find out more on Wednesday.
We also have Dawn's sister and family coming in for the week. We are looking forward to seeing family and Dawn is looking forward to having a few days off from work!
In general, things are getting better every day that goes by. We have our "tummy time" and Emily is getting stronger each day. She has a big head to hold up! (All that hair, you know) The last two nights, she has slept through the night without the 3:00 am screaming! This is a blessing for all involved. We don't know if it is because of the drugs we give her before she goes to bed (for the flu) or if she is just getting used to the pump. Either way, I am not going to complain, seeing that I am the one who has to get up with her when she cries.
The vision people say that she is doing much better and although she needs some work, they are very optimistic that she can overcome the challenges. It may be some time before we know how well she "really" sees, but she can follow objects and tries to grab things in front of her. These are good signs.
We are truly blessed, and as usual, we want you to know that we are praising God through every trial and every success. HE is good and we are blessed! We also want to thank all of you who pray for us regularly. We continually have people tell us they are praying for us and asking us how things are going. Some days I feel like a broken record telling the stories about Emily, but I don't mind because she is such a huge blessing and it gives me the chance to praise God for all that He has done for us.
I am going to attach a few pictures. I don't know which ones yet, but I am sure you will enjoy them no matter which ones I pick...because she is just so cute!
We love you all and appreciate all the prayers and support that continue to come our way!
All for HIS glory,
Mike
Eph 2:4-7
PS - Dawn got her haircut (see the picture below)
It has been a few weeks since our last email and I thought I would give you the latest. The funny thing is that the last few weeks have been uneventful.
I will start off with our hospital visit for Emily's upper GI exam. I didn't realize it was going to take all day! I was told to stop her feeding at 5:00 am and that she could have nothing but water until the test. I arrived at 8:30 am and was quickly put through the line of paperwork and forms. Within 45 minutes, we were in the room where it all begins. The nurse must have been a rodeo wrangler in a previous life (Although I don't believe in the whole "previous life" thing, it makes the story more funny). Within seconds she had Emily undressed and strapped into a contraption that had her head secured and five different straps holding the rest of her body in place. Her hands were strapped above her head and she looked totally uncomfortable. Needless to say, she was not happy and everyone in the hospital knew it.
The nurse then prepared a bottle of this thick white formula. She was surprised when I told her that she won't take the bottle, but was relieved when I pulled out a tube from my diaper bag. The doctor came in and quickly injected about 60cc's of this liquid into Emily's stomach. One of the keys to feeding Emily is to go slow, so this was a huge mistake. Emily was again crying her little lungs out. As she cried, I learned the reason for all the straps. The x-ray machine showed her stomach and all the fluid that was injected into it, but the machine didn't move vertically, so Emily did. It was like a rotisserie. They were turning her like a chicken over a flame; looking at her stomach from every direction.
About twenty minutes later, they finished and I mentioned to the doctor that she needs to release some of the formula or she will dry heave. She removed about 30cc's and Emily was fine. Then for the next four hours, Emily had to get an x-ray every 30 minutes. Thank God she only had to lie flat for these x-rays and they only took a total of three minutes each; but it was a long day! Emily was extremely well behaved all day and only had one crying fit that lasted about 10 minutes. The rest of the day she was happy to lie in her car seat or on her dad's lap. God is SO good!
After we had our last x-ray, we then had to go have some blood drawn. Keep in mind that she hadn't eaten since 5:00 am with the exception of the white stuff that they gave her. She was a little hungry (and so was I) and a little dehydrated. The first nurse tried twice to find a vein with no success and quickly turned it over to a more experienced nurse. She was able to get it on the first try and made it seem effortless. She was a God-send! Emily is not a fan of having needles stuck in her arm and, as I mentioned in my last email, I fight with all of my might to avoid it; although this time it was necessary.
The initial results from the test came back negative, meaning there is nothing wrong with her digestive track. We are still waiting for the results from the blood and urine test (I will spare you the details of the urine test...although very funny). We really don't think that they are going to find anything there, but better safe than sorry.
As I was talking with the doctor a few weeks ago, the problem is that she can't burp. This means that she has no way to release gas except by passing it through her entire system. The problem we are having is that it causes her pain during the last foot or so of its exit. She will usually cry uncontrollably until it passes. This is what we are trying to avoid. One solution that the doctor gave us was to have the nissen loosened. This is the surgery that tied her stomach around her esophagus to stop her from having reflux. Her thinking is that if we loosen the nissen, she will be able to burp and the problem will stop. Other problems occur, though. First, in order to do this...it IS a surgery! We don't know that we are ready to do another surgery on this poor little girl. The second thing is that it may not stop the problem, but may actually cause the reflux to come back. These are all bad things in my book. Why do something that may make things worse? We won't!
So where are we now?! This past week has been challenging for a different reason. Dawn started having flu symptoms about two weeks ago, and then Emily started about a week ago and then me shortly after that! Dawn is pretty much recovered and feeling better, but me and Emily are still in the suffering stage. She is continually coughing and has some breathing issues, I have a runny nose and I am run down 24/7. We are trying to get our rest and take our drugs to get better quick, but we will always welcome some prayer in this area.
We have started meeting with all the therapists in the past few weeks. We are meeting with the Speech Therapist once a week, Physical Therapy every other week and Vision and Nutrition once a month. Emily has been sick, so we haven't pushed her too hard. As a matter of fact, she had a meltdown when the Speech Therapist was here so we didn't get to do anything.
This week we have our appointment with the plastic surgeon. We are going to find out about the birth mark on her neck and the crease in her skull. God willing, there are no problems and these things will work themselves out naturally, but we will find out more on Wednesday.
We also have Dawn's sister and family coming in for the week. We are looking forward to seeing family and Dawn is looking forward to having a few days off from work!
In general, things are getting better every day that goes by. We have our "tummy time" and Emily is getting stronger each day. She has a big head to hold up! (All that hair, you know) The last two nights, she has slept through the night without the 3:00 am screaming! This is a blessing for all involved. We don't know if it is because of the drugs we give her before she goes to bed (for the flu) or if she is just getting used to the pump. Either way, I am not going to complain, seeing that I am the one who has to get up with her when she cries.
The vision people say that she is doing much better and although she needs some work, they are very optimistic that she can overcome the challenges. It may be some time before we know how well she "really" sees, but she can follow objects and tries to grab things in front of her. These are good signs.
We are truly blessed, and as usual, we want you to know that we are praising God through every trial and every success. HE is good and we are blessed! We also want to thank all of you who pray for us regularly. We continually have people tell us they are praying for us and asking us how things are going. Some days I feel like a broken record telling the stories about Emily, but I don't mind because she is such a huge blessing and it gives me the chance to praise God for all that He has done for us.
I am going to attach a few pictures. I don't know which ones yet, but I am sure you will enjoy them no matter which ones I pick...because she is just so cute!
We love you all and appreciate all the prayers and support that continue to come our way!
All for HIS glory,
Mike
Eph 2:4-7
PS - Dawn got her haircut (see the picture below)
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