Wednesday, December 8

Where to start. It’s been a week.

Last week Wednesday I had surgery to try to take care of the kidney stones on my right side (I have two more on my left side as well). They put a stent in between my kidney and my bladder and tried to “blast” the big stone into smaller pieces so the pieces could pass. Before it happened, I figured the surgery and recovery would be no big deal, but I was a little bit wrong on that one. It has been much more painful than I anticipated and so the last week has been tough. I figured I would be able to be back at the hospital with Walker by Thursday morning and when that wasn’t possible because of how I was feeling, I was quite upset that he had to be on his own.

The huge blessing in all of this was that my mom was able to come with me to the hospital on Thursday night and meet Walker. Long story short, I wasn’t able to be on my own in the city and Andrew had to work for a couple of days and take care of the other kids. So, my mom was able to take over as the second caregiver for Walker, which meant that she was able to come into the NICU with me. It was really special. I can’t even really describe how good it felt to have someone else get to meet Walker and see what our life has been like in the NICU for the past 7 weeks. Getting to share that with her for a couple of days meant so much to me. It also made it even harder that there are so many more friends and family, including his siblings, that we want to share him with but can’t. That has been one of the hardest parts of this journey.

Walker has still been experiencing a lot of desaturations in his oxygen. I would say they have actually gotten worse and more frequent over the last little while. This past Sunday evening we got a call from the hospital that Walker’s dsat spells had gotten quite bad and that they were running all of his bloodwork and urine to check again for any infection. His bloodwork showed that his hemoglobin was quite low, so he got another blood transfusion on Sunday night. On Tuesday morning we found out that he has a mild UTI, so he is being treated with antibiotics for the rest of the week. Poor kiddo has been poked with needles and had IVs replaced so many times in the last week. He is such a trooper.

The cardiologists ordered another echocardiogram for Walker last week to try and see if anything had changed that may be contributing to all of his desaturation spells. The echo showed that since birth, Walker’s pulmonary artery has gotten narrower. This is called pulmonary stenosis. This could be a possible explanation for some of his dsat spells. After everything that happened on Sunday evening they wanted an even closer look at his heart, so on Monday afternoon he went for a cardiac CT scan. They wheeled his crib down to the imaging room for the CT and I was so thankful that I was able to go along with him and stay nearby the whole time. The cardiology team will meet later this week to go over the results of his CT and make a plan for him. In the meantime, they have started Walker on a new medication to see if it may help lessen his cardiac-related desaturation spells.

Everything in the last week has felt like a lot. Kidney stones are no joke. They are physically painful but have also taken a huge mental toll on me. I have felt like I cannot be present for Jordynn, Easton, Walker, and Andrew like I want to. All of Walker’s desaturation spells, whether they are related to his replogle blocking or his heart condition, are stressful. When my mom was holding him last week, I saw him go blue in the face for the first time during one of these spells and it was scary. These spells make it difficult for me to hold him without constantly worrying if he is getting enough oxygen and looking up at the monitor to check his sats. Also, with all of the Christmas preparations and excitement happening, I have been hit hard this week by the fact that my family will not be together for Christmas. Walker is almost 8 weeks old and Jordynn and Easton have never got to meet their baby brother. We haven’t got to take a family picture together yet. We will do Christmas morning at home while Walker is in the NICU by himself. It’s hard. It has really put into perspective for me how difficult the holidays can be for many families going through many tough situations.

Through all of this we have continued to be blessed beyond measure by so many people in our amazing community. If you have prayed for us, cleaned our house for us, blessed us financially, surprised our kids with sweet gifts, made a meal for us, sent a card or a message to us, done our laundry for us, or made a care package for us-- thank you from the bottom of our hearts. You have made our days brighter and easier and have impacted us so deeply with your kindness.

Please pray that Walker’s UTI clears up quickly and that he is protected from any other infections.

Pray that his desaturation spells improve. That his replogle stays clear. That he gets enough oxygen.

Pray for wisdom for the cardiologists as they work to make a plan for Walker’s care.

Pray for strength in Walker’s little body.

Pray for God's protective hands to hold Walker close.

Pray for peace as we hold Walker in our arms, and also as we leave him in the care of his nurses and doctors.

Pray that God will be glorified each day through Walker’s story, that people will see God’s faithfulness through him.

Pray for relief from my kidney stones and pain.

Pray for renewed energy as we walk this road.

(Getting so big! He weighs 2.84kg now. He was 1.79kg when he was born.)