Friday, July 31, 2009

Going Home

Day 35: Friday, July 31

It finally came, the day we got to take our baby home. He passed his weight gain with flying colors, a whopping 15 grams last night. Blaise got a ride up to SLC to meet me early this morning. He helped me clean and check out of Ronald McDonald. We got up to the hospital, wide-eyed and smiling, at about 9am. I was told yesterday that we wouldn't be able to be discharged until the neonatologist and the nurse practitioner were done with rounds. However, when we got to the bedside they were both there too. It turned out they both didn't have rounds until later, so they said that we could go ahead and get out of there. The neonatologist did a final assessment and the nurse practitioner filled out the discharge paper work. It all started to move pretty fast and it was so exciting.

There were a few things that we had to do before we could leave. They have a car seat squad that helped Blaise properly install the carseat base. While he was down in the parking lot doing that I fed Will and talked over a few going-home things with the nurse. She took the sensors off of him and I dressed him in the outfit that Blaise brought from home. I wrapped him up and held him while the nurse started packing up stuff and clearing his crib. As I stood there holding him, I had the fantastic realization that I could move further away from the bed side than a 2 foot radius! I looked and double checked to make sure we really were all unhooked. Sure enough, no strings attached. It felt so good to wander around that room with my baby boy in my arms. Blaise came back up and saw me standing in the middle of the room, smiling.

We put Will in his car seat and it made us remember how little he really is. He didn't like being in there at first but we got him to fall asleep pretty soon. The nurse helped us carry all of our stuff out to the car. As we left the hospital it was so weird to have Will with us. It felt like we were stealing him. He slept the whole way home. It was so neat to finally bring him into our little apartment. These past five weeks have been quite the roller coaster. However, overall Will went as fast as his little body would let him. The only set back that he had the entire time was the week that he had the infection. We had prepared ourselves to endure at least two more weeks in the NICU, but we are thrilled that Will had a plan of his own. Thanks to all of you for reading, praying, and supporting us through these last five weeks. I suppose this is the end of one adventure and only the beginning of another.
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8 comments:

  1. Huge congratulations! We have been thinking of your little family a lot and are so glad everyone is finally home.

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  2. hooray! let us know if you need anything at all! we are just across the street!

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  3. Yeah!! I'm so happy for you guys! I am so glad he's finally home and you're all together now! I hope you'll continue to write and post stories, I've really enjoyed reading your blog. It's fun to get to know people this way.

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  4. Congrats on the baby. I knew you were expecting I just didn't know when. Sorry to hear about the complications but it doesn't suprise me you two handled it like Champs! Good luck with everything.
    Pam Bean
    Oh my email address is pbeaner@hotmail.com

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  5. Yay!!! I'm so glad he's home now and you're doing well!

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  6. He looks so cute and little in his crib! I'm so glad that he got to go home! Thanks for letting me see him in the hospital!

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  7. Yay!!! We are so happy for you guys!

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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.