Thursday, January 6

Hey everyone. Happy New Year! As this new year starts, I thought it would be a good time to share a pretty in-depth update on our little warrior, Walker.

First of all, he is growing like a weed. He turned 11 weeks (8 weeks corrected) on Tuesday. I think he always had a double chin and now it’s more like a triple chin. He weighs just over 8lbs and continues to have a patient, easy going demeanour. His hair is still crazy. He’s had his days and nights a little bit mixed up lately and I keep telling him we better sort that out before he starts getting a bad reputation with the nurses. On December 30, he came out of isolation after a Covid exposure scare, and was moved to a new room in the NICU. His new spot is right beside a big window to outside, which I am overjoyed about-- he had the sun shine on him for the first time this past week and it was so wonderful.

Walker’s replogle is still a struggle-- some days are okay, other days it blocks often and needs to be maneuvered a lot. He had a really hard couple of days while in isolation with a lot of desaturations and bradycardic spells. He was given another blood transfusion as a result, which, in combination with his increased heart medication, seems to have helped for now.

On Tuesday when Walker’s nurse went to start his G-tube feed at noon, she noticed the position of his tube had changed. Normally his G-tube insertion sits at 15cm, but when his nurse checked it that day it was at 10cm. This meant it had somehow pulled out quite a bit. If his G-tube moves too much, it can actually come out of his stomach. So, his nurse had to call general surgery to come and have a look at it. They were unsure if the tube was still in his stomach and ordered for his feeds to be stopped until they could get a better look at it. At around 5pm they finally took Walker down to IGT (Image Guided Therapy) where the radiologist was able to confirm the positioning of his G-tube. The radiologist explained that the tube had moved, but thankfully it was still coiled in his stomach. Nothing else had to be done and he was able to resume his feeds.

Last evening when I got to the hospital to spend some time with Walker, I walked in to him screaming with four nurses around his bed. They quickly explained to me that he had had two bloody stools that afternoon. They had stopped his feeds (again) and were trying to insert an IV line so that they could get him on fluids, which is why he was so upset. They finally got the IV line in after four tries, and by that point I was in tears because Walker was so upset. I felt so helpless standing there trying to soothe him while he screamed in pain. He had an x-ray and ultrasound done, full bloodwork, and they sent blood and urine cultures to the lab for testing. The nurse needed to hear back from the general surgeons before she could do anything else, so when I left last night Walker hadn’t had a feed since 3pm.

On top of all this, he has a really bad diaper rash which was making him unhappy.

This morning when Andrew went back to the hospital, Walker still hadn’t eaten. Overnight the general surgeons decided it was safest to put Walker on antibiotics and no feeds for the next five days. They explained that all the labs that have come back so far look fine, but they want to be extra cautious in Walker’s case because of his heart condition. Since Walker is a “cardiac baby” (as they call him), he is at a higher risk for many things, including poor perfusion to different orangs in his body. In this case, the blood in his stools caused them to worry about the possibility of poor perfusion to a part of his bowels. The three IV antibiotics they put him on cover all their bases in terms of infection, and taking him off of his feeds for the next five days allows his bowels to rest.

The last couple of days have been stressful with all of these new issues. All of Walker’s medical teams were supposed to have a meeting today to make a more detailed plan of care for him. We were really looking forward to this as it has been hard not having answers regarding the timing and order of the two big surgeries he is waiting for. Unfortunately, they told us this morning that they had cancelled the meeting, as right now is not the time to make a long-term plan for Walker, given his current circumstance. We are definitely disappointed that this meeting got postponed again, but are thankful for the wise and cautious decisions the medical staff are making as they try to keep him as safe and healthy as possible. It’s a long road. Walker has been in the NICU for 79 days now.

Some big news that we have not shared openly yet is that we have been given an official diagnosis for Walker’s condition. After blood tests on Andrew and I, and completing whole genome sequencing and thorough physical examinations on Walker, the geneticist was able to confidently tell us that Walker has VACTERL association.

VACTERL association is a rare condition (0.0025 - 0.01% of births) that is a combination of birth defects that affect multiple anatomical structures in the body. VACTERL is an acronym, with each letter standing for one of the 7 possible birth defects associated with the condition.

Vertebral abnormalities

Anal atresia

Cardiac defects

TEracheal-esophageal abnormalities

Renal abnormalities

Limb abnormalities

In order for someone to be diagnosed with VACTERL, all other genetic conditions have to be ruled out and the person must have at least 3 of the 7 birth defects. In Walker’s case, he has the C, TE, and L-- his heart defect, his tracheoesophageal fistula and esophageal atresia, and the missing radial bone and thumb in his right arm and hand.

Before Walker was born, I was consumed with wanting to know a diagnosis. I wanted to know exactly what to expect and be able to prepare as much as I could for what was coming. I had so much fear of the unknown and it felt like a diagnosis would ease some of my anxiety. After Walker was born and we went through all the testing and waiting, I was surprised with how inconsequential his diagnosis seemed to me in the end. I am grateful to know more about Walker’s condition, but it doesn’t change things in the way I thought it would before he was here. While we waited for a diagnosis in those first weeks of Walker’s life, we fell so deeply in love with the beautiful son God gave us. While there is still so much we don’t know, we do know that God chose us to raise this boy and that He will provide us with all we need along the way.

We covet your prayers for Walker and our family. Here is a list of things we would appreciate prayer for:

Pray that Walker will be protected in the NICU from Covid and other illnesses going around. Pray that our whole family will be protected as well so that we can continue to visit with Walker.

Pray that Walker is able to rest over the next five days and that he is not too grumpy or hungry. Pray that all of the pending test results come back negative and that whatever caused the blood in his stools will be gone. Pray that his IV line will stay in so that he doesn’t have to have it replaced again.

Pray that Walker’s heart will continue to function well as we wait for him to grow enough for his big surgeries.

Pray that Walker’s replogle will work well and that his oxygen desaturation and bradycardic spells will be few.

Pray that Walker’s multidivisional meeting will happen soon so that we can have some answers regarding the plan for him.

Pray for Jordynn and Easton. The days are long for them, too, and we are seeing this take an emotional toll on them.

Pray for strength and peace for Andrew and I.