Trey's battle with Gastroshisis
Hello everyone im blogging in hopes that i may be able to calm someones nerves about there upcoming delivery of a gastroschisis baby. I would be lieing to you if i told you that what you have infront of you is going to be a piece of cake. But i can promise you it will be worth every bit of stress…. Here it goes… When i was 15 weeks pregnant i went to the er because i was having some stomach cramping. They did an ultasound and the tech was unbelievably quiet which left me uneased. She wouldnt answer our questions and told us that the doctor on call will come to speak to us. We did find out one positive thing in that ultrasound and that was that our little baby was a Boy! We were so excited but the excitement ran alittle dry when the doctor came to speak to us. Ill never forget how easy those words came out of his mouth. (Talk about no bedside manners)… Your son has Gastroschisis. I really cant tell you much about the condition but i have spoken with your ob and they want you in there office tomorrow morning. So we went and they referred us to a high risk perintologist not far from our house. He was great and we liked him which was good because we would see ALOT of him from this point on. I had an ultasound every three weeks untill i got to 34 weeks then i was getting a weekly scan and two NON-stress tests a week. Trey looked great in all of his scans and passed all his nst tests. Then came the big day!! Feburary 22nd 2010 at 7:55 a.m. weighing in at 7 pounds 1 ounce at 36 weeks along through a planned c-section delivery, our miracle baby was born!… We had chosen to have our baby at Florida Hospital South because they had a nicu level 3 which would give Trey the best chance at beating this condition. I didnt get to see him and neither did my boyfriend before they whisked him away to the nicu where they cleaned him up and the surgeon was able to exam his bowels. They were able to put most of all his bowels back in during the initial surgery but they had to put about 2 inches into a silo that would be pushed in slowly for a few days untill his next surgery. When the surgeon was examining his bowels he noticed that Treys Small intesine had an atresia (which is when the bowel twist and dies) They told us that he would have surgery in three days to repair the atesia and close up the hole. But Trey started to have meconium coming from the intesines in the silo (which meant there was a whole somewhere in his small bowel) and they decided to do the surgery a day earlier to prevent infection. That was the most scary day of my life.. I couldnt talk eat or think straight untill Trey was out of surgery. The surgeon came out 2 hours later and told us that he did great and that they were able to repair his atresia and reconnect the small bowel however because of all the surgical procedures done to the small bowel he didnt want to connect the small bowel and the large bowel for about 6 weeks. Hence the reason why my son has an astoma (which is the ending of his small intesine still out of his skin on the right side of his belly button). They would put an ostomy bag over it for 6 weeks and then reconnect the small and large bowel but he would be able to come home with it. Believe me it sounds alot worse than it truly is. After that surgery Trey lost alot of blood so they gave him a blood tranfusion and everything when uphill from there. In a matter of two weeks he went from a pale very sick baby to a baby that was breathing on his own, holding his own body tempeture, and finally about to start feeds. We started him on pedialyte 1 ounce every three hours for a day and he tolerated it well then we started him on Breast milk 1 ounce every three hours then 2 ounces every three hours and then adlib (which means how much he wanted every 3 hours) My baby was doing soooo awesome. They told us that we would be able to bring him home.. But then the night before we had a set back he started dumping (which means he was pooping more than was he was taking in) Which meant his intesines were malabsorbing the nutrients and he started to lose weight. The doctors assured me that this is a very common probelm and that the hard part of the recovery process is already done. This is now just something that takes time and we just need to find the formula that works for him. Well they started him on a formula with everything really broken down so it would help with digesting and gave him imodium to slow down his bowels to give them time to absorb his nutrients and just as the doctor said it started to work. Instead of losing weight he gained some and his out out was cut in alot half. We are still in the hopital today as this all has happened within the past almost 3 weeks and were getting soo close to being home. I know its really hard and believe me i sometimes just want to run in the nicu and take my baby out of there. But you have to have faith and remember that God didnt bring them here for no reason. Find the good in the situation and most of all be strong because your baby needs all the strength they can get. God makes miracles called babies and gastroschisis babies are no exception.
