Monday, March 7

Hey guys. Quick update.

Walker is still really struggling to eat. He currently has an NJ tube, which bypasses his stomach and feeds directly into his intestine. The goal of the NJ tube was to help get his reflux under control-- if there is no food sitting in his stomach, technically there should be nothing to come up. However, he is still suffering from pretty terrible retching and reflux despite the NJ tube and all of his medications. His G-tube (which he is not using right now because his stomach can't handle it) is open all the time so that any gastric content in his stomach can drain from there rather than go up his esophagus and out his mouth. There is a lot of gastric content draining through this tube every day, and the doctors are struggling to figure out exactly why. Since so much is coming of out his G-tube, they have actually started re-feeding some of this gastric content to him (yep, you read that right). So, Walker currently has two feeding pumps attached to his bed-- one that feeds him his Portagen (which is the special formula he is on because of his chylothorax) and one that re-feeds him his gastric content. Thankfully he doesn't actually "taste" any of this as it is just going directly into his intestines. He has been slowly increasing his feed amounts by 1ml/hr per day, but unfortunately on the weekend they paused the feed increases because once again he wasn't tolerating them well. The doctors and surgeons on Walker's team are putting their heads together to try to get to the bottom of his feeding struggles.

Today Walker's cardiology and neonatology teams met to discuss some timelines and what the next steps for him are. We have been waiting for this meeting to happen for quite some time and were eagerly anticipating getting some more concrete timelines and plans for Walker. The days have felt very long lately and we have felt "stuck." At this point Walker has been in the hospital for almost 5 months and we are beyond exhausted. We desperately want to go home and have our family together. We are sad and angry that Jordynn and Easton still have only seen their brother once. We just want this to be over.

Unfortunately, the news we got today was a little bit disheartening in terms of us getting to go home and have our family together anytime soon. The cardiologists decided that based on how well Walker is doing clinically in regards to his heart, there is no rush for him to have his cardiac surgery done. The repair that he needs is quite complicated, and therefore the surgeons want to wait as long as possible-- the bigger Walker is, the better. As long as Walker continues to do well, they hope to wait at least two more months (or until Walker is at least 7kg) to do his heart surgery. Of course, if his condition deteriorates in any way from a cardiac standpoint, they will revisit this.

The cardiologists had told us some time ago that if Walker was doing well clinically in regards to his heart, he would likely be able to go home while he waits for his cardiac surgery. We were really hopeful this would be the case. Unfortunately because of his feeding struggles right now, this is not a possibility. In order to go home, Walker needs to be tolerating full feeds and cannot be feeding through an NJ tube. The surgeons have discussed getting Walker a G-J (gastro-jejunal) tube, which would allow him to go home. However, I learned today that it will likely be a couple of months before he can get one of these. His current G-tube is smaller than the smallest available G-J tube, and they can only up-size his tube once every 4 weeks. The G-J tube is two sizes bigger than the G-tube he currently has. On top of all this, they still aren't even completely sure what the cause of his feeding problems is and if the G-J tube will fix the problem.

All this to say, we are still in the NICU and right now it looks like we will be for quite some time. I am trying to stay strong and positive, but sometimes it is hard. I have learned that I can be grateful for so many things, but also disappointed and tired and angry at the same time. There is so much to be grateful for, and I truly am. I am grateful we got to take Walker on a little walk outside of the NICU. I am grateful for Walker's disposition-- God made that boy so easy-going and content and I thank Him every day for it. Despite everything going on, Walker smiles. He smiles at me, and at Andrew, and at every single nurse that comes to his bedside. He has quite a fan club and there are many nurses that come to visit him every day to get their Walker smiles. I am grateful for our apartment in the city. It has been an amazing gift to have a place so close to the hospital where the kids can be with us. I am grateful for family that love our kids and take them on endless adventures when we are too tired to do it ourselves. I am grateful for being gifted a night out with my husband this past weekend by other wonderful family. I am grateful for constant prayers. Please don't stop praying for us.

Pray that Walker gets relief from his reflux. It hurts him, and it hurts us to watch him go through it. Pray that they find a medication or solution that will work for him.

Pray that the doctors find a way to resolve Walker's feeding issues soon. Pray for new ideas and things they haven't thought of to come to mind. Pray that he will be able to tolerate full feeds. Pray that the doctors find a way to feed Walker that will allow us to take him home.

Pray that Walker continues to smile.

Pray for doors to open that will allow Jordynn and Easton to visit with their brother regularly.

Pray for strength and endurance and trust for us. Pray for feelings of anger, grief, and disappointment to be replaced with peace.

Pray that God uses our story, and Walker's story, to show His power through our weakness.

"Come you weary heart now to Jesus

Come you anxious soul now and see

There is perfect love and comfort in your tears

Rest here in His wondrous peace.

Oh the goodness, the goodness of Jesus

Satisfied, He is all that I need

May it be, come what may, that I rest all my days

In the goodness of Jesus.

Come and find your hope now in Jesus

He is all He said He would be

Grace is overflowing from the Saviour's heart

Rest here in His wondrous peace."

- The Goodness of Jesus by CityAlight

(Walker's first time out of the NICU with us)

(Tired babe and tired mom)

(Sleeping through his echocardiogram like a champ)

(My Oma picked out these bears for Walker, Easton, and Jordynn)

(This kid adores his daddy)