Wednesday, January 19

(Walker was very happy to have a bath the night before his surgery. He loves the bath!)

Well, Monday was quite the day. It was an overwhelming day and an exhausting day and an amazing day all rolled into one. As I was lying in bed Monday night, trying to turn my brain off enough to fall asleep, I was thinking about the prayer list I posted on Sunday evening. I mentally went down the list of things I had asked others to pray for and realized that God answered every single prayer, and then some. My heart was rejoicing with thanksgiving while at the same time feeling some anxiety about the night and the fact that Walker still has a long road of healing to travel.

I woke up Monday morning and looked out the apartment window to see a giant white snow globe. The biggest snow storm we’ve probably had in years, and of course it was on the day of Walker’s surgery. But I felt calm and just continued to pray that his surgery would still happen.

When I got to the NICU in the morning I was anxious for news. The first thing the nurse said when I walked in the room was that surgery had just called and said they would be up for Walker’s pre-op huddle at 8am. Thank you, Lord! I was so relieved. The nurse told me Walker had a quiet and restful night, and then I sat and cuddled with him until it was time for him to go to the operating room. I read him Psalm 23 and prayed over him as he slept in my arms. I felt peace about the day ahead.

I was able to go along with Walker as they wheeled his crib down to the surgical floor and say goodbye to him before they took him into the operating room. He woke up on the way down, which made saying goodbye a little bit harder. But I looked him in the eyes and told him to be strong and gave his hand one last squeeze. I tear up just writing about that moment. It is so hard to watch your child go through those OR doors and entrust them into the hands of others, with all the fear and unknown that a surgery brings. But I knew that it was God’s hands he was truly in, and that there was no safer place for him to be. He went into the operating room at 8:30am.

After checking in to the surgical waiting room, I actually went home quickly to eat some breakfast. A lot of moms talk about not being able to eat because of nerves on a day like Monday, but I ate normally all day. I think this is evidence again of answered prayers and God’s gift of peace to me that day. After eating I headed back to the hospital to wait for news. There is a board up in the waiting room that lists all the kids in surgeries and whether they are in pre-op, their surgery is in progress, or they are in recovery. I spent a lot of time looking at that board and every time Walker’s name came up it said, “surgery in progress.” Walker’s surgeon had told me that morning that if everything went perfectly, the surgery could be done in as little as 3 hours. So by around 11:30, I was doing my best to distract myself from looking at that board too much. I was thankful for a good book.

At 12:30, I heard a voice I recognized say, “Walker Kooy.” I looked up from my book and it was Walker’s surgeon. My stomach flipped and my heart started pounding. The first time Walker went in for this surgery at 3 days old, I just assumed it was going to go great and that he would be swallowing and eating in a week or two. Hearing the surgeon tell me that they had been unsuccessful was shocking and heartbreaking, so this time around I was very anxious to hear how things had gone. Of all the moments in the day, I think this is the one I was dreading the most.

The surgeon sat me down in a private room and explained how things went. He said in terms of anesthesia, Walker had sailed through the surgery with no problems. My stomach was in my throat at this point, as I waited for him to get to the rest. He then said that they were able to find both ends of Walker’s esophagus quite easily and had successfully attached them together, with moderate tension. Honestly, the relief in that moment is hard to explain. I was so happy, and yet scared to believe it was actually true at the same time. I told myself that he still needs to heal with no complications and that something could still happen in the next couple of weeks to change this positive result. After the disappointment of his first surgery, and many “set backs” in the NICU, I think I have learned to protect myself by expecting the worst and being very cautiously optimistic when hearing good news.

Walker was back in the NICU just after 1pm, and has had a very busy and tough 48 hours since. His surgeon ordered that he did not need to be medically paralyzed since the tension on his esophagus was only moderate, so that was good news. They have struggled, however, to manage his pain and keep him sedated and still enough to allow his surgery site to heal. They have been increasing his pain and sedation medications to try and get him comfortable. They have also restrained his left arm so that he can't bring it to his face.

Walker has gained over 1kg in fluids since his surgery, so he is very swollen. Honestly, he doesn’t look like my baby and it’s been very heart-wrenching to see him this way. It's even hard for me to look at (and post) pictures of him right now. They have started Walker on a diuretic to hopefully help his body get rid of some of the extra fluids so his swelling starts to go down.

Walker’s chest incision has been leaking more than expected, so they have had to change his dressing multiple times since Monday. The first time they did this, on Monday afternoon, he was in so much pain when they moved him that he stopped breathing for a short time and went blue. I panicked and had to leave his bedside because I was so scared. It was the first time all day that I really cried. My body was shaking and I felt sick. They were able to get him breathing again and put new dressing on his incision, but for the rest of the day I felt like I could not relax or take my eyes off of him and his monitors.

Yesterday while Andrew was with Walker, he gave everyone another scare. He had so much secretions in his throat that he started to choke and actually coughed out his intubation tube, which is breathing for him right now. Andrew told me that one nurse ran down the hall to get help while about 8 medical staff came running to his bedside. His oxygen saturations dropped very low for quite some time and they had to bag him. He was blue again. The medical team had to manage keeping his head and neck still while trying to work very quickly to get his old intubation tube completely out and a new one put in on the spot so that he could breathe. I struggle with being thankful that I wasn’t there to see it because I don’t know that I could have handled it, and feeling guilty that I wasn’t there next to him.

Both of these things have shaken me up and have made it very hard not to panic every time one of his monitors starts alarming or he moves his head. It’s hard not to go down a path of thinking about what could have happened in either of these situations and how quickly things can change for him. It’s been a stark reminder that Walker’s tiny body is fighting hard every minute to recover from this surgery.

Some days all of this feels unfair and I struggle to comprehend why his little body has to deal with so much. I wish I could take it all away. I wish he didn’t have to go through this. All I can do is continue to put my trust in God every day, every moment. These things are completely out of my control, but they are completely in His. Throughout this entire journey I have had a deep assurance in my heart that Walker is going to make it through all of this and that God has great things planned for him. Day by day he faces medical mountains, but I believe that God will move them.

Please pray that Walker's vitals will remain stable.

Pray that the medical team will find the right balance of medications to keep him comfortable and still.

Pray that he will rest.

Pray that his esophagus will heal quickly and well.

Pray that the leaking from his chest incision will stop.

Pray that his urine output will increase and the swelling in his body will go down.

Pray that his heart will continue to function well.

Pray that he will get enough oxygen and start breathing on his own again soon.

Pray that his body tolerates feeding tomorrow and that he has no reflux.

Pray that we will see steady improvements in his condition every day.

Pray that Andrew and I will feel a renewed sense of peace after everything that has happened in the last few days.

(Right after his surgery on Monday afternoon)

(Tuesday evening)

(Wednesday morning)

You are so strong, Walker James Kooy.