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
Showing posts with label Dawn's Emails. Show all posts
Showing posts with label Dawn's Emails. Show all posts
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
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 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
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
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!
May 1, 2008 - Time goes by so fast!
Hello everyone,
Can you believe that Emily is now 6 months old? Well, actually, it has taken me so long to sit & write this update, that she is going to be 7 months old in about a week. My how the time flies! I know we have not been as diligent about sending updates and we have heard from some of you about that. Well, it has been a little busy here, and some days we are just in survival mode. If all three of us make it through the day that is a good thing! Anyway, enough of my excuses…
Emily is now 14 lbs. 6 oz. and 25 ¾ in. long (maybe more by now since those measurements are from a couple of weeks ago). She is getting long and lanky now. The pediatrician and the nutritionist were very happy with her weight gain. We have not had as many issues with her feeding as we did in the past. The pump is really working out at night, but the goal is to eventually get rid of that. So we have been increasing her day time feeds. We have to do this very gradually to give her time to adjust, but so far she is up to 4 oz. 3 times a day & then her nighttime feed (which is still the majority of what she eats all day). Mike has also started working with (somewhat) solid foods: rice cereal & applesauce, bananas, peaches & even carrots, which were NOT a big hit. Truth be told, she tends to wear more than she eats, but there is progress. The fact that she will take anything by mouth is a HUGE step.
Along those same lines, she is loving her pacifier these days. Sometimes she just likes to chew on it rather than suck on it (OK most of the time), but it has been great to see her interested. For so long she wanted nothing to do with the pacifier. She doesn’t quite know how to hold in her mouth, so you have to hold it for her, but one step at a time. She has also started finding her hands to chew on – it seems more accidental than anything, but she is pretty good about chomping down when she can. Of course she will also do that to our hands or the couch cushion or just about anything else that gets near her. We are pretty sure she is teething these days. She has definitely been drooling up a storm! We have tons of wet bibs, burp cloths & outfits to prove it! And there have been many days when she has just been a joy to be around (insert sarcastic smirk here). It has actually been very stressful for all of us because she has been pretty MISERABLE. She has had some lengthy crying fits where she is inconsolable, so it has been difficult at times.
She is definitely revealing more & more of her personality. And she is quite feisty! She lets you know when she doesn’t want to do something (like tummy time, but more about that later…). She has started to vocalize a little bit. Sometimes she just likes to hear herself make noise and sometimes she wants to let you know something (I don’t want to be in this chair anymore, I am ready to get out of bed, etc.). She has laughed quite a few times (usually when Mike is tickling her). And by the way, she is pretty funny when she has been tickled. Her arms and legs go straight up in the air & are stiff as a board – it is pretty comical. Well anyway, her laugh isn’t a hearty laugh, just little noises. She really only makes one sound: aaaah. That is the noise she makes when she laughs, when she is just trying to be heard & when she is about to cry. So needless to say it can be a little tricky to decipher what she wants/needs.
She cannot roll over, but manages to move herself around the crib or on the floor. She basically “walks” with her bum (and her feet too). I secretly believe that she is practicing for visits to the dentist that will come later in life – you know what I mean, I am sure you have walked with your bum when they come at you with that sharp metal pick! She manages to spin herself around on the floor so her head ends up where her feet used to be & vice versa. This little trick is also what gets her wedged into odd spots in the crib. She seems to only be able to do this in one direction because she pushes with her feet. So once her head is against the bars of the crib, she cannot go in the opposite direction & get herself out. At times, we get her up after a nap & she has stripes across her forehead from the crib bars (She really doesn’t seem to like her head pressing against wooden bars, go figure – that would be one of those times when she “vocalizes” loudly).
She is making some progress with holding her head up. When she gets tired her head lunges forward rather quickly so we have to be careful. I have gotten used to turning my face so her head hits my cheek. That way she doesn’t get hurt & I don’t get a fat lip. She doesn’t quite have a handle on sitting up on her own. First, her head gets pretty heavy. Second, her body is pretty stiff and rigid so it is a struggle to keep her legs bent. Mike does exercises with her every day & he is great at it! He finds new and interesting ways for her to do her tummy time without her even realizing she is doing it (she HATES being on her tummy). But his creativity has helped her to make some great strides with lifting her head & building up those muscles. The physical therapist also comes once a week now, so she checks on Emily & gives Mike new exercises to do. They work on getting Emily to roll over, to hold up her head, to bear some weight on her hands or feet and to stretch her muscles.
Emily also had an appointment with the neurologist this month. He was hoping to take her off Phenobarbital (her seizure med) because it has a sedative in it & can hinder her learning. But first, he wanted to do an EEG to check the seizure activity in her brain. She had the EEG Tuesday & the doctor said she does still have seizure activity. So he recommended switching her meds to one that does not sedate her, it is called Keppra. She has actually taken it before in the NICU. So for the next few weeks she will be weaned off Phenobarbital & started on Keppra. My only concern with this medicine is that in the NICU we were told that it could make her irritable. One of the issues with the damage to her brain is it can make her irritable so this medication may add to that – we aren’t sure. She has been pretty fun to live with lately, granted most of that is due to her teething, but it still makes me a little concerned. Hopefully she will do well with this transition.
One other thing that the neurologist recommended is that we go to an occupational therapist. He is hoping that the therapist will put her on a medication that will relax her muscles. As I already mentioned she is pretty stiff and rigid. This is due to her Cerebral Palsy – it is called spasticity & it means that she has increased tone in her muscles. Now that may sound good since we all want toned muscles, but for her it means that her body is too stiff. Her muscles do not have the stretch & flexibility that is needed for a lot of natural movements that we take for granted everyday. So he is hoping that a medication that will relax her muscles will help with her exercises. When we mentioned this medication to her speech therapist & physical therapist they were both very excited & said they have seen many kids make great improvements once they are on the proper meds. So we will see what happens. That appointment isn’t until June, though.
In the meantime, we will continue with our usual routine. Emily has speech therapy & physical therapy once a week now. And she sees the nutritionist once a month. She no longer sees the therapist from VIPS (Visually Impaired Preschool Services). We decided that we wanted to give the physical therapist more visits & we aren’t as concerned about her vision at this point. She will continue to have regular checkups with the ophthalmologist so we know that he will keep watch for anything odd. Her eyes are healthy & she has gotten much better about following objects (and people) or turning in the direction of a noise, so it isn’t a major concern for right now. She makes strides each week & we are so thankful. Mike has been a GREAT stay-at-home dad. He is very diligent about doing her exercises & finds new and creative ways to work them into her normal daily routine.
And as stressful as things have been around here, there have been many highlights. One of them is that Mike and I will be able to get out once a month. One of the ladies at our church knows how stubborn & thickheaded we can be & that we won’t ask for help, so she took it upon herself to organize an outing for us once a month. So a couple of ladies will come by to watch Emily for a few hours while Mike and I get some time to ourselves. I CANNOT tell you what a blessing this is! We are so thankful to have a church family that is willing to help us out (even when we are too stubborn to ask ). And another highlight is that for the past week Emily has slept through the night EVERY NIGHT. Wooo hoooo! This is very exciting! Plus she has been a lot better the past few days too. Maybe her teeth aren’t hurting her as much or maybe she has just gotten used to the new feeling. Either way we are thrilled to have our happy cheery girl back.
Well I think I have rambled on way too long. Since we have not sent updates in a while, I had to a lot to report. Sorry about that. I would say that we will send updates more often, but I won’t make any promises. We take each day as it comes. But I do hope that this email finds you doing well. And I hope spring is blooming in your neck of the woods. It is a wonderful reminder that God is the giver of life & He does it beautifully!
In HIS Strength,
Dawn
Can you believe that Emily is now 6 months old? Well, actually, it has taken me so long to sit & write this update, that she is going to be 7 months old in about a week. My how the time flies! I know we have not been as diligent about sending updates and we have heard from some of you about that. Well, it has been a little busy here, and some days we are just in survival mode. If all three of us make it through the day that is a good thing! Anyway, enough of my excuses…
Emily is now 14 lbs. 6 oz. and 25 ¾ in. long (maybe more by now since those measurements are from a couple of weeks ago). She is getting long and lanky now. The pediatrician and the nutritionist were very happy with her weight gain. We have not had as many issues with her feeding as we did in the past. The pump is really working out at night, but the goal is to eventually get rid of that. So we have been increasing her day time feeds. We have to do this very gradually to give her time to adjust, but so far she is up to 4 oz. 3 times a day & then her nighttime feed (which is still the majority of what she eats all day). Mike has also started working with (somewhat) solid foods: rice cereal & applesauce, bananas, peaches & even carrots, which were NOT a big hit. Truth be told, she tends to wear more than she eats, but there is progress. The fact that she will take anything by mouth is a HUGE step.
Along those same lines, she is loving her pacifier these days. Sometimes she just likes to chew on it rather than suck on it (OK most of the time), but it has been great to see her interested. For so long she wanted nothing to do with the pacifier. She doesn’t quite know how to hold in her mouth, so you have to hold it for her, but one step at a time. She has also started finding her hands to chew on – it seems more accidental than anything, but she is pretty good about chomping down when she can. Of course she will also do that to our hands or the couch cushion or just about anything else that gets near her. We are pretty sure she is teething these days. She has definitely been drooling up a storm! We have tons of wet bibs, burp cloths & outfits to prove it! And there have been many days when she has just been a joy to be around (insert sarcastic smirk here). It has actually been very stressful for all of us because she has been pretty MISERABLE. She has had some lengthy crying fits where she is inconsolable, so it has been difficult at times.
She is definitely revealing more & more of her personality. And she is quite feisty! She lets you know when she doesn’t want to do something (like tummy time, but more about that later…). She has started to vocalize a little bit. Sometimes she just likes to hear herself make noise and sometimes she wants to let you know something (I don’t want to be in this chair anymore, I am ready to get out of bed, etc.). She has laughed quite a few times (usually when Mike is tickling her). And by the way, she is pretty funny when she has been tickled. Her arms and legs go straight up in the air & are stiff as a board – it is pretty comical. Well anyway, her laugh isn’t a hearty laugh, just little noises. She really only makes one sound: aaaah. That is the noise she makes when she laughs, when she is just trying to be heard & when she is about to cry. So needless to say it can be a little tricky to decipher what she wants/needs.
She cannot roll over, but manages to move herself around the crib or on the floor. She basically “walks” with her bum (and her feet too). I secretly believe that she is practicing for visits to the dentist that will come later in life – you know what I mean, I am sure you have walked with your bum when they come at you with that sharp metal pick! She manages to spin herself around on the floor so her head ends up where her feet used to be & vice versa. This little trick is also what gets her wedged into odd spots in the crib. She seems to only be able to do this in one direction because she pushes with her feet. So once her head is against the bars of the crib, she cannot go in the opposite direction & get herself out. At times, we get her up after a nap & she has stripes across her forehead from the crib bars (She really doesn’t seem to like her head pressing against wooden bars, go figure – that would be one of those times when she “vocalizes” loudly).
She is making some progress with holding her head up. When she gets tired her head lunges forward rather quickly so we have to be careful. I have gotten used to turning my face so her head hits my cheek. That way she doesn’t get hurt & I don’t get a fat lip. She doesn’t quite have a handle on sitting up on her own. First, her head gets pretty heavy. Second, her body is pretty stiff and rigid so it is a struggle to keep her legs bent. Mike does exercises with her every day & he is great at it! He finds new and interesting ways for her to do her tummy time without her even realizing she is doing it (she HATES being on her tummy). But his creativity has helped her to make some great strides with lifting her head & building up those muscles. The physical therapist also comes once a week now, so she checks on Emily & gives Mike new exercises to do. They work on getting Emily to roll over, to hold up her head, to bear some weight on her hands or feet and to stretch her muscles.
Emily also had an appointment with the neurologist this month. He was hoping to take her off Phenobarbital (her seizure med) because it has a sedative in it & can hinder her learning. But first, he wanted to do an EEG to check the seizure activity in her brain. She had the EEG Tuesday & the doctor said she does still have seizure activity. So he recommended switching her meds to one that does not sedate her, it is called Keppra. She has actually taken it before in the NICU. So for the next few weeks she will be weaned off Phenobarbital & started on Keppra. My only concern with this medicine is that in the NICU we were told that it could make her irritable. One of the issues with the damage to her brain is it can make her irritable so this medication may add to that – we aren’t sure. She has been pretty fun to live with lately, granted most of that is due to her teething, but it still makes me a little concerned. Hopefully she will do well with this transition.
One other thing that the neurologist recommended is that we go to an occupational therapist. He is hoping that the therapist will put her on a medication that will relax her muscles. As I already mentioned she is pretty stiff and rigid. This is due to her Cerebral Palsy – it is called spasticity & it means that she has increased tone in her muscles. Now that may sound good since we all want toned muscles, but for her it means that her body is too stiff. Her muscles do not have the stretch & flexibility that is needed for a lot of natural movements that we take for granted everyday. So he is hoping that a medication that will relax her muscles will help with her exercises. When we mentioned this medication to her speech therapist & physical therapist they were both very excited & said they have seen many kids make great improvements once they are on the proper meds. So we will see what happens. That appointment isn’t until June, though.
In the meantime, we will continue with our usual routine. Emily has speech therapy & physical therapy once a week now. And she sees the nutritionist once a month. She no longer sees the therapist from VIPS (Visually Impaired Preschool Services). We decided that we wanted to give the physical therapist more visits & we aren’t as concerned about her vision at this point. She will continue to have regular checkups with the ophthalmologist so we know that he will keep watch for anything odd. Her eyes are healthy & she has gotten much better about following objects (and people) or turning in the direction of a noise, so it isn’t a major concern for right now. She makes strides each week & we are so thankful. Mike has been a GREAT stay-at-home dad. He is very diligent about doing her exercises & finds new and creative ways to work them into her normal daily routine.
And as stressful as things have been around here, there have been many highlights. One of them is that Mike and I will be able to get out once a month. One of the ladies at our church knows how stubborn & thickheaded we can be & that we won’t ask for help, so she took it upon herself to organize an outing for us once a month. So a couple of ladies will come by to watch Emily for a few hours while Mike and I get some time to ourselves. I CANNOT tell you what a blessing this is! We are so thankful to have a church family that is willing to help us out (even when we are too stubborn to ask ). And another highlight is that for the past week Emily has slept through the night EVERY NIGHT. Wooo hoooo! This is very exciting! Plus she has been a lot better the past few days too. Maybe her teeth aren’t hurting her as much or maybe she has just gotten used to the new feeling. Either way we are thrilled to have our happy cheery girl back.
Well I think I have rambled on way too long. Since we have not sent updates in a while, I had to a lot to report. Sorry about that. I would say that we will send updates more often, but I won’t make any promises. We take each day as it comes. But I do hope that this email finds you doing well. And I hope spring is blooming in your neck of the woods. It is a wonderful reminder that God is the giver of life & He does it beautifully!
In HIS Strength,
Dawn
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