Surgery Day

We both arrived to the hospital early this morning to meet with the surgeon prior to Koby's surgery. To all parents that are used to having your children operated on--wow. We have a greater appreciation for everyone that has had children with special and unique challenges. It is exhausting. We both didn't sleep well, even though this is a minor surgery on the scale of what babies have to often go through with his challenges.

They took out the feeding tube in his nose and it was a pleasant site to see. We can now see his face without tape covering half of it.

Everything went very well with his surgery. It took about an hour. We've been able to spend the entire day with him. They had him on a ventilator during surgery and thought he might need that for a day or two. But he was breathing well enough that he was off of it almost immediately after surgery. He was really upset once he woke up but he was given pain medication and has been sleeping for most of the day.











He will slowly adjust to getting milk regularly through his feeding tube. We are happy that the surgery went well. He got a little bit of milk around 5pm tonight. We've been asked how long he will have a feeding tube. We don't know the answer to that yet, as each child can react differently. We have heard of babies that need it for a few months, others need it until they are a few years old and start to eat more solid food. The most extreme case is if he never ends up learning to eat and swallow. We don't expect this will be the case but we just have to take it a day at a time. We'll first teach him to suck a pacifier consistently. Once he has this down then food will be slowly introduced, depending on his progress. It's not just going to be like he wakes up one day and starts to suck and eat normally. He will have to be taught something that is normally a natural reflex. So it will take him (and us) a lot of patience and work. He will be given his food through a slow-drip pump every night so we won't have to wake up to feed him. He's been crying a lot during his feeds so I'm sure we will be awake during feeding times at first. Our nurses think he may have reflux and wants to spit up his food, but he doesn't have the ability to gag yet. So instead of spitting up and feeling better he just cries in pain, not able to get any relief. It's a weird problem to have. He will sometimes cry for a straight hour when it's eating time.

While it may not be permanent, the feeding tube will be a new experience for us. Sharalee and I were talking last night that it almost feels like we are having our first child again; ready to learn everything from scratch. When our fifth child was born a couple years ago we thought we had seen everything a newborn could throw our way. We knew how to feed, soothe, bathe, and take care of a newborn. With Koby we get to experience some new challenges. It is a bit intimidating but it is something we will adjust to. Instead of a bottle and binky he will have tubes and syringes. We will adjust quickly. We are just thankful for all of his progress that he has to work so hard to achieve.






Here's a video of his first feeding.