I’ll start this post by saying that Pearl is doing phenomenal! She will be 24 weeks old right about the time I post this and her 6-month birthday is right around the corner! Her lungs sound as though they have completely cleared up and at this point, it seems that her medication has her seizures very much under control. While we were in the hospital over Christmas, they did another EEG and found that she was having several hundred seizures a day though she doesn’t always manifest them physically. According to her therapist, that is likely attributed to her low muscle tone. Either way, the doctors revisited her medication after the EEG and that seems to be yielding wonderful results. Now that her lungs have cleared up and her seizures are under control, she is sleeping much more peacefully. She’s also started smiling a good bit more. And by smiling, I mean smiling that can’t be mistaken for random muscle spasms. She seems to notice more when we engage her and she herself also seems more engaged. Obviously, not to the point of a healthy 24-week-old, but she is doing great.
Right now, she is scheduled to have g-tube surgery on January 23rd, and if all of that goes according to plan, her quality of life should go through the roof. She’s had this tube down her throat her whole life. She will also have a Nissen procedure to help with her reflux. As of right now, fluid can easily get into her lungs but the Nissen should reduce those risks. She really needs to stay healthy and cold free until her surgery date. If she’s not at 100%, then they will not perform the surgery for obvious reasons. Also, we are still waiting on the final word from anesthesiology as to whether they believe that she can tolerate coming off a ventilator after the procedure. The surgeon doesn’t foresee it being an issue, but he said he’s never had a patient with HPE, either. We’ll see. This surgeon seems to be one of the best in town at these procedures, and we are extremely grateful for that, but please join us in praying for Pearl in these matters.
As for everything else, there are many changes on the horizon. We really need to make a few changes in terms of some of Pearl’s care providers, and that feels like a daunting task. I won’t go into details here, but there are a couple of things that we’ve hoped would get better but haven’t. We’ve tried to work with what we’ve been given, and tried to just be grateful for what we have, but at the end of the day, she needs to be treated with dignity and honor as an image bearer of the Creator of all things. That has nothing to do with HPE… that has to do with being human. It’s so tough. Ruth and I both are extremely non-confrontational but we have been charged with caring for all 3 of these kids and if we see things that can be improved upon, we need to address those issues.
I’ve never had a problem with lucidity here, so I’ll go ahead and say that there are times I want to pull someone aside and say, “Hey, you do realize that you’re in Pearl’s life because life isn’t necessarily going well for her, don’t you? You can’t just go through the motions. You have to be vigilant, and if you can’t be that, please say so. What you do matters…a lot. This is my daughter, not an invoice for insurance.” Man, I know that sounds super entitled, but it’s where I am. Please pray for clarity in these decisions. Pray for cool heads on our part. There are times when we walk away from an encounter or a phone call, and want to scream. I don’t feel as though we are moving hastily, but the time has come to move on a few things. This part is stretching us, for sure.
We are also probably going to try to sell our home this spring. We’ve got to move out from 700 square feet. We really can’t get out all that much so we need to have a place that we can all be at one time, without feeling as though we are smothering each other. The kids need a yard that they can use. If we aren’t able to take them to the park or on walks like we used to, then we need to have a place where they can just run and be kids. Pearl is also outgrowing her living room apartment space and will likely need a crib soon. We’ve got no place to put a crib! This, like just about everything else over the last year, is going to take a miracle. We need to find a realtor who understands that selling our house will probably take twice as much work for about half as much money as they are used to. It’s not a million dollar property, and nor is it really “stage-able”, meaning there will probably be a suction machine and an IV stand with a feeding pump in the living room when they show it to prospective buyers. We need a realtor who has the time, energy, and will to carry most of the weight, and we need a buyer who is not put off by walking into a living room that sort of feels like a hospital room. We also need to find a new home (hopefully still in East Nashville) that fits us and is in our price range, and a mortgage broker who can maybe pull out a decent mortgage in spite of my not working so much of last year. So you see… we’re in miracle territory on this too, but that’s okay. I feel like we live in that territory most of the time and we aren’t intimidated by that. It’s not up to us to be movers and shakers who make it all happen. It’s up to us to do our best, and to be present, abiding in Christ, trusting him as he works all things.
So yeah, there’s a lot on our plate right now. Pearl’s doing really well, as are Brennan and Abbey, and they didn’t see anything weird about eating Subway in the empty hospital cafeteria on Christmas day. They don’t call her Pearl anymore, either. Abbey started calling her Sweetie a couple of months ago, and that has morphed into just calling her “Sweets!” I feel like they’ve all 3 really started bonding well and looking out for each other. One tremendous upside to our busyness with Pearl is that Abbey and Brennan are really locked in together. Since they are so dependent on each other for companionship and playtime, they are finding all sorts of creative ways to get along, compromise, and really play well together. As a father, it’s beautiful to watch. What father doesn’t hope that his kids aren’t at each other’s throats but rather to see them interact as best friends? What a privilege and gift!
We are constantly in the midst of difficulty and beauty, frustration and wonderment, hyper engagement and loneliness. I never thought I’d say that, but this is lonely. It’s harder to relate to our peers than it has ever been, and if you had told me prenatally that it would feel this way, I wouldn’t have believed you. I miss balance. I miss that constant broken awareness of God’s presence that we felt early on. I feel like most days we are drowning in logistics, always running a day late and a dollar short. We all need a fresh wind and renewed perspective. It’s within that proper perspective of all God has done and continues to do that we find hope, gratitude, peace, and patience to carry on. Pray that that will come soon. I always say this, I know, but thank you for praying. Seriously. Thank you that you continue to read these posts that are well beyond the length of quickly digestible. The fact that I should be one of the most grateful people on the face of the planet is not lost on me, but what good is this Church if we can’t be transparent and honest about our struggles.