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,
PS - Dawn got her haircut (see the picture below)