Tuesday, July 28
I decided yesterday that it is time for me to be closer to Will so I don't have to do all of this driving by myself every day. I checked in to the Ronald McDonald house here in Salt Lake this afternoon. The building itself was once an old bed & breakfast. It was built back in 1900 and it is gorgeous. The house that I am staying in is non-smoking and they don't let kids stay there either. It is very quiet and very clean. I have a queen sized bed and a private bathroom. I plan to stay here for the next three nights and go home Friday afternoon. I am so amazed at the blessings that I have enjoyed all because of the donations of time and money of others. All of this experience has motivated me to get involved in these sorts of things someday.
Before leaving for SLC, Blaise and I called up to the NICU to get the update on Will's feedings for the day. They have moved him up to a whopping 42 cc. This is practically full feedings. His TPN was then down to 1 mL/hr. This afternoon they went ahead and stopped the TPN altogether and replaced it with IV fluids for the time being. With the diminished concern for him getting too much food, they let us try breast feeding for the first time today. It was slow going and we will both need to be patient as he makes the transition over from the bottle. He is doing so well, but I have been told by the nurses that this can be a pivotal point for gastroschisis babies. He could continue to do just fine with this amount of food, or he could start rejecting it. The goal now is to see that he is gaining weight on this amount of food and even increase it just a little more. Also, this is the time that we have to help him make the transition to breastfeeding. I am glad that I will be so close by for the next few days to be here for as many feedings as possible. So wish us luck. Once he's gaining weight and breastfeeding, we can all go home!
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About Gastroschisis
I have posted some links for your information and research, but here's the run down on gastroschisis.
What is it?
Gastroschisis is a birth anomaly in which the baby's abdominal wall does not close all the way during early development. These abdominal defects can result in several problems, the least of which is gastroschisis. This is when some of the intestines escape through the small opening in the abdomen and are now outside the baby's body. During pregnancy these organs are exposed to the amniotic fluid for some time which makes the once maliable and functional bowel stiff and swolen.
How is it treated?
Since gastroschisis is not as serious as other similar defects, it is not dangerous to still deliver the baby vaginally. Upon delivery the baby will go to the NICU and be examined by the pediatric surgeons. At this point of evaluation, there are several courses of action. What needs to happen eventually is that the bowel needs to be surgically put back into the abdomen of the baby.
Option 1: If the bowel has little damage, is quite maliable and healthy, and the baby's belly seems to have the room to accept all of the intestine at once, the surgeons will perform a "primary closure". The surgery is fairly simple. They will make an incision to enlarge the opening enough to push the bowel back inside and sew it up once it is finished.
Option 2: If the bowel is stiff and swolen and or the baby's belly does not have the room to accept it all at once, they will perform a "staged closure". This is more complicated and takes some time. This invloves placing a "silo" over the bowel (this is basically a bag that holds the bowel suspended above the opening). This silo will be somewhat inserted into the baby's belly so as to allow the abdominal fluids to enter and thus healing the bowel by bringing the swelling down and making it malleable again. As the bowel heals and with a little assistance from the doctors the bowel will slowly but surely re-enter the baby's abdomen.
Recovery
A staged closure can take up to a week or two. So you may ask why does he have to be in the hospital for 5 to 6 weeks. Since the baby's system is not used to the pressure introduced by this bowel that is now inside the abdomen, and the bowel has been exposed to the amniotic fluid for so long, it simply takes time for the baby's digestive system to normalize. Aside from the digestive system, other things may be affected such as breathing due to the increased pressure inside the body. The baby's recovery can be broken down into three distinct stages. Pre-Surgery, Post-Surgery/Pre-Feedings, and Post-Feedings.
The first is simply the waiting period before the baby's bowel can be put back inside.
The next period is after surgery, the baby's system is still very fragile and can only be fed interveinously. During this time the amount of nutrients is slowly increased until the baby is ready for the final stage, when his body can accept real food.
Once on breast milk feedings from a bottle, the baby is closely monitored. The process is slow as the baby must phase into these feedings from the IV. Once the baby is up to full feedings and is gaining weight, we can all go home!
Long term effects
Once the baby has fully recovered and is ready to go home, he should be fit as a fiddle and have little or no related complications thereafter. The main thing that he may experience is a case of acid reflux, but this can be treated with medication and it usually will go away as he grows and gets older.
What is it?
Gastroschisis is a birth anomaly in which the baby's abdominal wall does not close all the way during early development. These abdominal defects can result in several problems, the least of which is gastroschisis. This is when some of the intestines escape through the small opening in the abdomen and are now outside the baby's body. During pregnancy these organs are exposed to the amniotic fluid for some time which makes the once maliable and functional bowel stiff and swolen.
How is it treated?
Since gastroschisis is not as serious as other similar defects, it is not dangerous to still deliver the baby vaginally. Upon delivery the baby will go to the NICU and be examined by the pediatric surgeons. At this point of evaluation, there are several courses of action. What needs to happen eventually is that the bowel needs to be surgically put back into the abdomen of the baby.
Option 1: If the bowel has little damage, is quite maliable and healthy, and the baby's belly seems to have the room to accept all of the intestine at once, the surgeons will perform a "primary closure". The surgery is fairly simple. They will make an incision to enlarge the opening enough to push the bowel back inside and sew it up once it is finished.
Option 2: If the bowel is stiff and swolen and or the baby's belly does not have the room to accept it all at once, they will perform a "staged closure". This is more complicated and takes some time. This invloves placing a "silo" over the bowel (this is basically a bag that holds the bowel suspended above the opening). This silo will be somewhat inserted into the baby's belly so as to allow the abdominal fluids to enter and thus healing the bowel by bringing the swelling down and making it malleable again. As the bowel heals and with a little assistance from the doctors the bowel will slowly but surely re-enter the baby's abdomen.
Recovery
A staged closure can take up to a week or two. So you may ask why does he have to be in the hospital for 5 to 6 weeks. Since the baby's system is not used to the pressure introduced by this bowel that is now inside the abdomen, and the bowel has been exposed to the amniotic fluid for so long, it simply takes time for the baby's digestive system to normalize. Aside from the digestive system, other things may be affected such as breathing due to the increased pressure inside the body. The baby's recovery can be broken down into three distinct stages. Pre-Surgery, Post-Surgery/Pre-Feedings, and Post-Feedings.
The first is simply the waiting period before the baby's bowel can be put back inside.
The next period is after surgery, the baby's system is still very fragile and can only be fed interveinously. During this time the amount of nutrients is slowly increased until the baby is ready for the final stage, when his body can accept real food.
Once on breast milk feedings from a bottle, the baby is closely monitored. The process is slow as the baby must phase into these feedings from the IV. Once the baby is up to full feedings and is gaining weight, we can all go home!
Long term effects
Once the baby has fully recovered and is ready to go home, he should be fit as a fiddle and have little or no related complications thereafter. The main thing that he may experience is a case of acid reflux, but this can be treated with medication and it usually will go away as he grows and gets older.
Danielle,
ReplyDeleteI am so excited to hear that things are going well and that you can kind of see the light at the end of the tunnel. I am anxious and excited for you to finally be home with your little baby!
Jen Schefer
What exciting news! He's such a strong little guy and tough fighter. We're so glad to hear he will be home sooner rather than later.
ReplyDelete