Friday, February 4

Day 108 in the NICU. This would be difficult under normal circumstances, but Covid has made it even more difficult. We long for Jordynn and Easton to get to touch and hold their brother, to spend time with him, develop a connection to him. We long for our families to meet Walker. We long for others to be able to help us care for him so that we can take a break. We long, more than anything, to take him home with us. It’s been a long 108 days.

Life since Walker’s surgery has not gone as smoothly as we had hoped. Last week Wednesday, when he got all the tubes off his sweet face, was such a high. It felt like things were really moving in the right direction and we were excited for Walker to take steps towards trying to feed orally and hopefully move out of the NICU. However, this has not been the case.

They started giving Walker very tiny amounts of breastmilk through his G-tube last week Thursday. By Friday morning they had to stop his feeds because his reflux was so bad and he was retching constantly-- he didn’t seem to be tolerating his feeds. On Friday night they started him on a new medication to try to help with his reflux. The medication takes a few days to build up in his system and start helping, so the plan was to start feeding him on Monday. On Sunday, however, Walker was not himself. He was very irritable and upset, crying off and on most of the day, and his heart rate was very high. They ran his blood work and cultures to check for infection. The results seemed to show some sort of early infection, so they started him on IV antibiotics, again. On Sunday night I was holding Walker after giving him his bath and getting him all clean and settled, and I noticed his whole back felt wet. The nurse and I looked him over and thought maybe we had accidentally gotten the dressing on his chest incision wet during his bath, so we changed that and his clothes and that was that.

Monday morning, I came in to nurses and general surgeons around Walker’s bed looking at him. They discovered that the tiny little hole from where his chest tube had been after his surgery was leaking a lot of fluid, so much that he was soaking through the dressings very quickly. The collected some of the fluid to test it and did a chest X-ray, which showed a build-up of fluid in his lung cavity. When the results on the fluid sample came back, they confirmed that Walker had something called a chylothorax. A chylothorax happens when lymphatic fluid, called chyle, leaks out of the lymphatic system and causes a build-up in the pleural space. They aren’t exactly sure what caused it in Walker’s case, but are fairly certain it was a result of something likely being nicked during his surgery. When the fluid builds up, it can cause difficulty breathing, chest pain, and coughing, which explained why Walker was so upset all day on Sunday. The plan was to start feeds on Monday, but unfortunately because of the chylothorax that plan was put on hold. In order to give the chylothorax time to heal, Walker needed to be NPO (no feeds) for around five days.

Over these five days, Walker continued to retch and gag often as a result of his reflux, despite not having any food in his belly at all. It’s really hard to watch and I wish I could just make it stop. The reflux is very painful for him and the retching exhausts him. Since the new medication didn’t seem to be helping much yet, they increased his dosage.

As a result of the chylothorax, the medical team explained that when Walker is able to feed again, he will need to be given a special formula-- no breastmilk at all-- for six weeks. This was devastating to me, which I know probably seems a bit trivial. But I have been faithfully pumping around the clock, despite everything that’s going on, because I feel like providing breastmilk to nourish Walker is one of the only things I can do to physically help him. It’s been about a month now since he has been able to feed normally on breastmilk-- a month on IV fluids rather than milk in his belly. I have been waiting for him to heal from his surgery so that he can start his feeds again because it is very hard to watch your baby not be able to eat. I have been longing for 15 weeks to get to feed him orally, and now when he finally gets that first bottle it will be formula, not my milk, that he tries and develops a taste for. Even after these six weeks are over, there is no guarantee that he will be able to have my breastmilk again. It just seems so unfair, especially to a very tired mama.

On Thursday, the plan was to start Walker on very tiny amounts of his new formula. Before going ahead, they did an X-ray to make sure everything looked good. Unfortunately, the X-ray showed that the fluid was building up around his lungs again, so the surgeons ordered that he be NPO again for five more days. If the fluid continues to increase, they may need to re-insert a chest tube to drain it, start new medications to help heal it, or fix it surgically-- they are not sure what will happen yet.

On top of all this, Walker had his newborn hearing screening done over the last week and did not pass in his right ear. They are still in the process of doing further testing, but it seems somewhat likely that he may have some hearing loss on that side. Since his eye on the right side is a little bit "lazy" and it is his right arm that has abnormalities, it seems like there may be something going on with the right side of his body. Walker is on the list to have a brain MRI done to look into this. Honestly, it’s exhausting and hard. I don’t want any of this for him. I want him to feel better. I want him to eat. I want him to leave the NICU. I want him to come home.

Despite all these things, guys, I promise I have not lost sight of the fact that Walker is so blessed to be in the hands that he is in-- God’s hands, and through Him, the hands of phenomenal medical staff. The care Walker receives is truly beyond incredible and I could cry just thinking of the heart that his nurses and doctors put into their work, into him, every day and night. It is so clear that it is more than a job to many of them. They truly care about Walker and I thank God for them and for SickKids hospital. I also have not lost sight of the fact that Walker really has come so far. I am thankful for God’s protection and the miracles that He continues to do in Walker’s little body. The road may not be one I would choose, but I know God has chosen it, and He will carry us through.

O Lord, my Rock and my Redeemer

Greatest treasure of my longing soul

My God, like You there is no other

True delight is found in You alone

Your grace, a well too deep to fathom

Your love exceeds the heaven’s reach

Your truth, a fount of perfect wisdom

My highest good and my unending need

O Lord, my Rock and my Redeemer

Strong defender of my weary heart

My sword to fight the cruel deceiver

And my shield against his hateful darts

My song, when enemies surround me

My hope, when tides of sorrow rise

My joy, when trials are abounding

Your faithfulness, my refuge in the night

O Lord my Rock and my Redeemer

May all my days bring glory to Your Name

(He fell asleep in his new chair)