Monday, December 20

Christmas week is here, but it doesn’t really “feel” like it. I’ve been challenged in the last couple of weeks to keep my heart set on the real joy of this season— Immanuel, Christ with us— rather than the traditions and activities that usually bring me joy around Christmastime. I have never been so poignantly aware of my need for the real Christmas. Christ came down to earth to be with me in all my messiness and brokenness. The comfort of knowing He is walking with me, with our family, down this hard road has given me strength and hope on days when I felt like I couldn’t do it anymore. And there have definitely been days.

Last week Sunday evening we got into the city with the kids and were planning on spending a few days there before going back home for my second kidney stone surgery on Wednesday. That night Jordynn woke up in the night vomiting— in the little room that all four of us share at the apartment. If you know me at all, you will know that I don’t deal well with sick kids. It was a long night. The next morning we packed everyone up again and drove back home, and then I turned around and came back to the city by myself to be with Walker and to keep my distance from the others so I didn’t get sick before my surgery. I spent the next couple hours frantically trying to disinfect the whole apartment and myself all while stressing about whether or not I should even visit Walker. It’s very mentally exhausting for me to constantly weigh the fear of making him sick against the guilt and sadness of him being alone.

Thankfully I did not catch Jordynn’s stomach bug and was able to have my surgery on Wednesday. The surgeon was able to blast the rest of the stones that were in my right kidney, but he left the stent in. I was very uncomfortable and did not feel well at all for the next few days. Then yesterday I had the pleasure of pulling the stent out myself (being sarcastic, just in case you didn’t catch that). But I felt instant relief and was so glad to have it out.

Unfortunately by Sunday night (yesterday) I didn’t feel well, again. I was driving into the city by myself and felt nauseous and my whole body hurt. Turns out Andrew and I caught whatever stomach bug Jordynn, and then Easton, had. Honestly, I just cried. It’s been a very long two months and it sometimes feels like every time things are looking up, something else happens that knocks me back down or causes more stress. I cried because being sick sucks, but also because I am tired of being so busy driving back and forth, and packing and unpacking, and visiting Walker, and trying to do fun and normal things with the other kids, and never having any time to sit down and breathe. I cried because I am tired of not being with Andrew, or with the kids, or with Walker. I cried because we are two long months into this journey but we still have so much further to go. Thank you, God, for the hope of Christmas— Immanuel, here with me in all of this.

Walker had a good week where he was very stable, followed by a not-so-good last couple of days. There was supposed to be a multi-divisional meeting for him this morning, where all of his doctors— cardiology, general surgery, nurse practitioners, neonatologists— met to discuss moving him out of the NICU and into the surgical ward. The meeting didn’t happen. The last two days Walker has been having a lot of oxygen desaturation spells, to the point where it just seemed like a constant up and down in his numbers. The nurse practitioner explained that while this is still happening, they won’t consider moving him. While it feels disappointing in one sense, in another sense I am thankful. I was nervous about them moving Walker out of the NICU. As much as a private room would be nice, I want Walker to be where he will be the safest, and the idea of him not being in the NICU with a nurse constantly watching him scares me. I am also anxious about the change— it feels like we finally have this whole NICU thing figured out and have found a routine that works for our family for now. The idea of all of that changing again and us having to navigate another new normal is a lot. There is fear in the unknown. In the end, I am just so thankful to know that God is taking care of it all, and that He has Walker right where he needs to be right now.

So, the plan is for Walker to have another echocardiogram tomorrow to look into why he has fallen back into these spells. After his last echocardiogram and CT scan, the cardiologists decided he would not need any type of procedures on his heart right now and that hopefully the new heart medication they started him on would help. After the last couple of days, however, they decided they need to take another look. The doctor explained to me today that it is possible the medication won’t do the trick and he will need a procedure done on his heart after all. For now they have increased his dosage of the medication and it seems to be helping a bit.

Thank you for continuing to find time to hold our family in your prayers and to remind us of that despite the busyness of this season. I truly hope you are able to experience the joy of Immanuel being with you this week.

A thrill of hope, the weary world rejoices,

For yonder breaks a new and glorious morn.

Fall on your knees, oh hear the angel voices,

O night divine, o night when Christ was born.