We thought the whole feeding tube removal process was going to go differently. When you are first getting ready to remove the tube, you are told it should close up all by itself within 2 weeks. Key word there is should. We were also told if it doesn't, Little A may need a few stitches. I thought "ok just a couple of stitches on the outside wouldn't be terrible"...clearly not thinking stitches on the inside may be needed. Well 3 weeks go by and there is still some leakage, but you keep telling yourself that it can't be his food or milk because the stomach lining has to have closed up...it's just healing juices. You start to Google "feeding tube removal sites" and the few images and stories you get don't match your situation, so you think it must be healing. We decided we better go back to the surgeon's office who put it in and have them take a look to ease our minds. A few days before I panicked because while changing the gauze on little A's tummy it is purplish just like the yogurt he ate a few minutes ago. My stomach starts to ache and I think to myself this is not good and my worst case scenario is going to come true. A few days later we drive all the way to the city to see the nurse practitioner. She looks at Little A's g-tube hole and tells us it looks like it's almost healed up and that some granulated tissue is in the way. I tried to explain to her about the yogurt a few days before, but she still felt it looked fine. She put on some silver nitrate to help with the granulated tissue and 15 minutes later we were on our way...only told to come back if it got worse or didn't improve. We thought this was it and we were worried for nothing. We went on a family vacation to the beach for a few days which was still a high anxiety situation since the hole was not completely closed. While there we ended up using an antibacterial waterproof bandaid to keep the site somewhat dry on the beach. That band aid really backfired on me because I did not realize it was antibacterial and not to be used on sensitive skin. Little A literally had a square shaped rash around the tubie site and he was leaking. I was so panicked and felt so guilty. Using cortisone cream and then just a skin protectant we were able to clear up the rash from the band aid, but unfortunately the tubie site still wasn't cooperating. For a few days straight after breakfast, Little A was leaking through his gauze. I couldn't deny it, it looked like the milk he just drank. Only thing was, this doesn't happen every time he eats or drinks and it's not an excessive amount. It only happens in the morning, then the rest of the day the tubie site looks like it is trying to heal and close. This causes us to make excuses, but now it's almost 2 months since the tube has been removed. We either need to buy stock in a company that makes gauze or see the doctor. We do the rational thing and see the nurse practitioner again. All morning and the way there I have in the back of my head that I know what the answer to all of this is going to be, and I try to keep it at the back so I don't make myself crazy. At first she looks at it and thinks the same thing she did last time, that the granulation tissue is keeping it from closing completely, but then we made sure to explain the leakage and how it looks like milk. In hopes her answer to the problem will be different we also explain how it's weirdly only in the morning. Inevitably her answer is that Little A is going to need stitches that are done in the OR (a nice way of saying surgery to close up the stomach). None of the surgeons are around in the office of course to confirm that, so next week we have to go all the way to the city for another 15 minute appointment with the surgeon in order for him to come to the same conclusion and schedule a date with the OR. The positive note is that she did not feel it was an emergency because although he is leaking a bit it is not enough to cause Little A to be dehydrated or lose weight. In fact, he gained a few ounces in the 3 weeks between appointments with the nurse practitioner. I am trying not to freak out and cause myself too much anxiety every day leading up to a surgery not even scheduled yet, but it is really hard to think about your baby going through that. My mom keeps reminding me, if at 2 weeks old this 5lb something ounces baby was able to make it through surgery to get the tube in the first place without any problems then he is going to be absolutely fine for the next one. Little A is one strong kid! The hardest part is going to be dealing with a hangry baby that day. I just wish that I could make all of this go away already.
Update: the surgeon had said that more often than not the stomach does not close on it's own and surgery is needed. It is a routine surgery and Little A will be going home the same day as long as there are no complications. The surgery date is September 17th at 6am. Little A is a strong little boy and will be fine! This momma can't wait for it all to be over.
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