September 17th: Surgery Day

The night before, the surgery got pushed back to an 8am arrival/9:30am start. Surprisingly, I was able to fall asleep and get a solid 4 hours and another few with some tossing and turning.  My exhaustion was greater than my anxiety I guess. Of course, even though 

Little A didn't know what was going on, he woke up at 5:00am. Normally he would take some milk and go back to sleep, but all he was allowed at that point was water or juice. I swear as all the adults got dressed we also took turns using the bathroom due to anxiety. We left the house at 6am because surgery being pushed back meant we were going to hit traffic going to the hospital in the city.  It took us about an hour and a half--but as the anxiety was building it felt even longer. After we signed in, we went to the waiting room that had toys for Little A and shortly after a nurse came to get my husband and I first. We went into an exam room and went over some medical history. Although my stomach was still churning, she was definitely a calming factor. She brought in a mat and let Little A pick what toys he wanted to bring with him when he joined us in the room. The nurse played with Little A in between checking his weight and vitals. While we waited for the anesthesiologist and surgeon, Little A just wandered around the room and the hallway.  All the nurses who passed him commented on how cute he was, and one even gave him a sticker. He was wearing the cutest little hospital gown that was a little too big and toddler sized slipper socks. His cuteness helped lighten the mood. Little A--so innocent, happy and smiling--didn’t even know what was coming his way. The anesthesiologist came into the room and explained things and got consent. Something about his presence and voice was just so calming and I was not feeling as anxious as I had on the way there. Then the surgeon came in, explained the procedure again and said it should be about an hour and then he’ll come talk to us about how it went. Again, I was feeling a little calmer at this point still just because everyone around you at the children’s hospital seemed so comforting and safe.  Thank G-d grandma came with us and stepped up to the plate when neither my husband nor I felt like we could handle bringing Little A to the OR while they put him to sleep (although I think somehow if I had I would have been able to muster up the mommy strength for Little A). I gave Little A a big kiss and said see you soon. When mom came back from the OR, all three of us settled into the waiting room. My father in law made it to the hospital too and joined us in conversation to pass the time. A few candy crush boards later and an hour had passed already. The surgeon came out to talk to us and told us everything went well and about the aftercare. Ten minutes after that we were able to go to the recovery room where Little A was still asleep in a crib. The nurse was amazing and told us to let him sleep.  It is better for them to wake up on their own so they won’t be as cranky. As soon as we heard a peep and he started to stir I was standing right next to the crib so when he opened his eyes he saw me. Little A did not like the leads or blood pressure cuff and was getting upset. The nurse helped me pick him up while they switched out the crib for a big comfy chair for me to hold Little A in. When he was ready he drank some apple juice from his bottle and when that stayed down we switched him to his milk. Then we saw the Little A we know. He was not happy when his blood pressure was taken again and again and he did not like the heart monitor leads or the pulse ox on his foot. He cried and tried to take it all off. We kept telling the nurse, that is his angry cry because he isn’t getting his way, not a cry of pain.  After about an hour in recovery, since he stomach was handling food, we were able to get ready to go. All the wires and stuff were taken off and we got him back into his clothes, but he was still a little weary. He cried/whined all the way to the elevator, which is when he realized that momma and grandma were just as happy to be leaving the hospital. Once we were back at the car and he was buckled into his carseat, you could tell he felt safe and relaxed again; even most of the way home, which this time was only a 45 minute trip. He was cranky at times which was expected, but he was also hungry enough to eat some light snacks. After a nice 2 hour nap, Little A was almost himself and signing to go outside on the swing. Since Little A was such a trooper, we of course brought him outside. Kids are so resilient and by bedtime he seemed to be his goofy self again.  As for mom, grandma and dad, we can let out a sigh of relief that this chapter of Little A’s journey is officially over and behind us. We will have a few more years before we have to worry about visiting an OR again. I still can’t believe sometimes how far he has come in such a short period of time...I am definitely proud of him! Little A will be able to do anything and conquer the world!.

Tubie removal: didn't go as we thought

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.