Blessed
Hi, My name is Allison, I am 20 years old. When I first heard the news I was 18 and about 13weeks along and I had found out my son would be born with Gastroschisis, I was devastated. I had never heard of this and had no idea what it was. After speaking to the doctor and doing my own research on it, I learned more about the defect that my new born baby would have.
We soon had appointments with specialist, surgeons and ultrasounds every week sometimes even twice. My whole pregnancy went by really fast, and thankfully I didn’t have any complications. As the time got closer we were told that I would have him by a planned c-section and everything would good perfect, I would have him, he would be taken to a different room and have the surgery to put the silo on the intestin that was remaining out his body. Than after they were able to get it all back in he would have an additional surgery to close the hole. Than we would take it from there, start his feeding and he would be home before no time. But that isn’t how it went at all, I was nothing prepared for what lied ahead.
Alec decided to come 2 weeks before his planned c-seaction, so he was than 4weeks premature. I had gone into and labor and by the time I had got to the hospital I was already dilated to 3 and my water was about to break, an hour later on Sept.2 2009 at 9:39am he was born, and immeditiely taken to another room to be put on a ventilator and to secure his intestines that were out. After my surgery I was able to see him for the first time.
It was several days later until his intestine was fully back into his stomach, they had taken the silo off and stiched up his stomach, about 3 days later they noticed his stomach was getting hard and turning a blueish color, they did some x-rays and seen that there was an abstruction and nothing was getting threw. The only way to fix it was another surgery to remove the piece that was abtructed. The following morning they did the surgery and found that most of his bowel was matted together, they ended up removing 50% of his bowel. So now we would be dealing with what he now has, SBS( Short bowel syndrome) Yet another thing I have never heard of.
At this point we had no idea what to do, we were told many options. We could be transfered to Seattle, He could get the STEP procedure or a bowel transplant or we could wait it out and hope for the best. We decided to wait it out, after speaking with numerous of people, he still had a good amount of bowel left, we told it the quality not the quanity so we were hoping with what he did have left that he was strong enough, that he wouldn’t need to be put thru any more surgeries. Things were starting to look up for us, he was eating food thru a bottle and doing really good. Until he kept dumping and after talking a GI doctor they decided to they need to put him on continous feed to make his bowel grow. This would mean he needed a feeding tube along with a broviac since he would be getting feed at such a slow rate he still needed the proper nutrtion. So they decided to replace the PICC with a broviac and give him a feeding tube. A mothers worst fear if having to do that there child, yet alone new born baby. After seeing him with the feeding tube and broviac I felt horrible, it shouldn’t be like this he shouldn’t need this. So many thoughts ran thru my head.
It was a couple months later and he was making progress slowly, there were a few bumps, he had got RSV, an ear infection, Staff and his line also had got infected and needed replaced. All in the last month he was there. Finally after 5months of being in the hospital on 2-2-09 Alec came home. He still had a feeding tube and a broviac. His tube feeding was at 16cc an hr/24 his TPN was at 675ml/ 24hrs. and he weighed 14pds. I was so scared when that day finally came, taking home a 5month old baby with a feeding tube and a broviac I was only 19yrs old. Now he is 10months old he is 20lbs, his tube feeding is at 41cc/hr and his TPN is at 350ml/12hrs. He is now crawling, sitting up pulling himself to stand and is eating baby food and a little bit of our food. He is doing great! Should be getting off the TPN in about 3months and than it will be a new beginning.
Looking back on when I first found out I was pregnant I couldn’t believe it. I was scared enough already, than finding out I would being having a baby born with a birth defect, I was devasted. Than learning he would have a feeding tube and a broviac there are no words on how I was feeling. I thought I would be overwhelmed, I would do something wrong and he wouldn’t develop properly. But its amazing how non of this has slowed him down, and he doing great! You would never known he had this problems. As for me, this has made me a stronger person and most of all a mother! It really makes me appreciate my son and how lucky I am to have him here. I am now going to school for nursing to work with babies with birth defects. He is my inspiration!
Here is a little slide I put together.
slideshow
Hi all! I wanted to share the slideshow I made of our experiance. This web site was the first one I found after I was told our baby had gastro. I hope this helps moms to be!
Leah
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Gastroschisis: A video of my daughter's journey
My daughter was born with gastroschisis on September 24th 2008. She had surgery the day she was born and was in the NICU for 6 weeks. I created a video of her first two months. I hope that it touches you and helps new parents who are expecting a baby with gastroschisis or already have a child with gastroschisis.
