Thursday, April 21

On April 19, Walker turned six months old. He has officially spent half of his first year of life in a hospital. We definitely did not expect this, and we definitely were not prepared for it. Before Walker was born, we knew about his heart defect and limb difference, but there was so much unknown-- so much that depended on how Walker would respond to the outside world. We were told that with his heart defect, there was potential that he would be born “blue” (from lack of oxygen), but it was also possible that he would not be. We were told that depending on how his body and heart functioned in the outside world, he could either need a small heart procedure or two to keep him healthy until he was big enough for his open-heart surgery, or he could not. The doctors told us to prepare for the idea that Walker would likely be in the hospital for a few weeks, but that it was possible he may be able to go home after just a few days. Little did we know that he would decide to make his appearance 8 weeks early. Little did we know that he would be born unable to swallow. Little did we know that a few days or weeks would turn into a few months, and then half a year.

The last six months have been challenging, to say the least. We have been stretched. We have been heartbroken, disappointed, angry, overwhelmed, anxious, and exhausted. We have cried many tears and had days where we just couldn’t keep it all together anymore. But through the stretching we have grown. We have adapted, learned, advocated, persevered, smiled, and laughed. We have found a way to keep our family together as much as possible through it all and have fought hard to create some sense of normalcy for our kids. We have made cherished memories together and have had moments of pure joy. I’m really proud of my family.

At the end of March, one of the things I had been fearing since Walker was born happened-- we tested positive for Covid. I was terrified of this happening because the thought of Walker having to be all alone in his hospital room for ten days broke my heart. Well, as we have seen throughout this entire journey, God had it all under control.

A couple weeks before we got Covid, the hospital approved Andrew’s mom as a third caregiver for Walker. To be honest, I’m not even sure how this came about. I nonchalantly mentioned in a casual conversation one day with Walker’s nurse practitioner that we were really hoping Covid restrictions lightened up at the hospital soon. I had said we could really use the help of a third caregiver, just so that Andrew and I could take a break once in a while and spend some time together with the other kids. About an hour later, a nurse was at the door asking the name of my mother-in-law because she had been approved as a third caregiver for Walker. I was in complete shock. Walker’s nurse practitioner cared enough about us that she went out of her way to make this happen for us, without us really even asking.

Fast forward a couple of weeks to us getting Covid, and because Andrew’s mom had been approved as a third caregiver, she was able to spend the week at the hospital with Walker. She moved into our apartment in the city while we all went home to rest and get better. It was special for her to spend that time with Walker, and it was actually really nice for us to be home for a week with the big kids-- I hadn’t been home for more than a day at a time really since Walker was born. It was extremely hard to be away from Walker for that time, but in the end, God took care of him and us and used it for good.

(First tape- and tube-free face picture!)

On April 13, Walker finally got his GJ-tube! This was a day we had been anticipating for what felt like a long time. He was scheduled to go for his procedure at 1:30pm that afternoon, but I got a call from the hospital early in the morning saying that a spot had opened up and they were actually going to take Walker down early, at 8:30am. Normally at the hospital things get pushed back, they rarely get pushed up. We were thrilled! The procedure went well and Walker came back with his fancy new tube-- an AMT Micro G-Jet (even the name is fancy-- it sounds like an aircraft). They had to dilate his stoma (the hole on his stomach where the tube goes in) in order to get the tube through, so he had some bleeding and discomfort but the nurse assured me this was normal and even expected. Besides that, everything went great. They were able to place the tube successfully and within an hour he was getting his feeds through it.

(This is Walker's new tube, but it's not Walker-- it's a doll that we learned on in a GJ-tube class we took at the hospital)

This new tube is a GJ-tube. It looks mostly the same on the outside as his old G-tube, except there are two ports on it instead of one. One port goes to the “G” (gastric) and the other port goes to the “J” (jejunum). It is held in place by a little inflated balloon, which sits just behind his belly button in his stomach. The balloon is filled with water, and once a week we have to check the water level and refill it to 2ml. We are able to use the G-port to vent Walker and let out any extra gas or gastric content. This helps with his retching and reflux. He is not able to get any food into his stomach at this point still, because he isn’t able to tolerate it and refluxes badly. The J-port is attached to his feeding pump for feedings and is also used to administer his medications.

(This one is actually Walker :) His "J" tube is actually glow-in-the-dark so you can see it when you're hooking up a feed in the middle of the night!)

Once Walker got his new GJ tube and was back to feeding, the goal was to continue increasing the amount of milk he was getting per hour in order to build some breaks into his day. For the last couple months, Walker has been on continuous feeds through his tube. This meant there was a constant slow flow of milk to his jejunum and he was always hooked up to his feeding machine. In the past week, Walker made it to his goal feeding amount and his goal for breaks! He feeds for 18 hours a day and gets 6 hours off. This means that we have 6 hours where Walker is not attached to his feeding pump so that we can have a bit more freedom with him. We have loved taking him for walks around the hospital and being able to play with him and hold him without having to stay within a few feet of his IV pole and worry about pulling on tubes and wires. We actually even snuck Walker outside of the hospital doors last week on a beautiful day for his first-ever breaths of fresh outside air!

(He was happier than he looks, promise!)

The next thing that the medical team has been working on with Walker is clamping his G-tube for longer and longer periods of time. Since Walker’s surgery in January, he has pretty much always had his G-tube open to drain any gastric content from his stomach. This was to help with his reflux, in hopes that he would not damage his esophagus. The problem with this is that the fluids he was losing needed to be replaced. So, over the past few weeks they have been slowly trying to clamp Walker’s G-tube for chunks of time to see how he would handle it. Then, just this week, they made the jump to clamping his G-tube all the time. He has done okay, but his retching and reflux has definitely increased again since they made this jump. What happens now when he is retching badly is that we vent him. This means we put a large open syringe into his G-tube for about 10 minutes just to let any air or gas out and give him some relief.

Another huge step for Walker was that he started trying solid foods last week! For the first time in Walker’s whole life, he had food in his mouth and he swallowed it. It’s hard for me to wrap my mind around how absolutely amazing that is. Walker was born completely unable to swallow, has undergone two major surgeries to connect his esophagus to his stomach, and has spent three months recovering from his last surgery to make it to this point, and here we are. God is good.

Because of all the negative stimuli Walker has had in and around his mouth-- his replogle tube, intubation tubes, feeding tubes-- he has developed an aversion to anything in his mouth at all. He won’t take a soother or allow anyone’s fingers in his mouth-- he uses his tongue to push them out and gag almost instantly. Also, Walker has not had to use his sucking reflex to feed, and oftentimes when babies don’t use their sucking reflex, they lose it. All this to say, the OT prepared us for the fact that trying solids may not go well and it could be a very long road before he even allows the food in his mouth or figures out how to swallow anything. In true Walker fashion, though, he surprised us all and rocked it. He did not instantly gag (I honestly couldn’t believe it), and for all the puree he pushed back out with his tongue, he actually did swallow a couple of times! The OT was so impressed! Because of Walker’s reflux issues and the fact that he still has a lot to learn in terms of swallowing, he definitely won’t be getting actual nutrition from solids any time soon. But, it is good for him to practice and build up a tolerance for when his esophagus and stomach can handle it. It’s also feels really meaningful for us to be able to do a “normal” baby thing with Walker. It gives us hope that things will get easier for Walker. We pray that he will be able to get all of his nutrition through oral feeding one day.

Alright, I am going to stop there for now and leave you all with a cliff-hanger-- I will post another update tomorrow (Friday) night! I'll leave you with some more cute pictures though!

Stay tuned! :)

(This is Andrew's sweater from when he was a baby!)