It has been WAY too long since I’ve posted an update! Since my last post, we have gotten our kids back in Houston with us and met with Sunley’s surgeon.
I’ll recap her diagnosis once again: Currently, her diagnosis is still Hypoplastic Right Heart Syndrome (HRHS), which is a broad term used to group together a number of different combinations of heart defects. You can have a group of patients with HRHS, who all have slightly different defects. It is less common and will sometimes have (very slightly) better outcomes than Hypoplastic Left Heart Syndrome, and we are grateful for that answered prayer. HRHS is the broad diagnosis for her specific groupings of heart defects, and basically means that Sunley is missing the right half of her heart. Right now, the doctors think that she has Double Outlet Right Ventricle, Double Inlet Left Ventricle, malposed Greater Arteries, and a massive VSD. They are not sure that she has any right ventricle, however, so those specific defect details may change slightly after she’s born, but they are confident that it will remain HRHS. There is no cure for HRHS, but the plan is for Sunley to undergo palliative care, which will include at least 3 open heart surgeries. Palliative care means that she will never “get over” her heart condition, but if the surgeries are successful, they should increase her lifespan (Without surgery, Sunley wouldn’t make it more than a few months max), and possibly get her well into adulthood. The surgeries she will have (PA Banding at 1-2weeks old, Glenn at 3-6 months, and Fontan at 3-4 years old) have very good survival rates for the surgeries themselves, but the tricky part comes afterwards. These surgeries are all about achieving good Oxygen Saturation levels. Healthy Sats with a healthy heart are at 100%. As Sunley’s levels drop, the surgeons will decide when it’s time to go in. We won’t know if the surgery is successful until we know her sats afterwards. They will never be 100%, but hopefully we can get close. If they go well, then she won’t need a heart transplant (at least not yet), and that is our goal! I’ll hold off on too many of the details, since I’m still learning myself. I will say that it has been VERY hard to make the decision to put her through so much surgery and trauma without knowing if it will even work. It’s possible that she could go through all this for just a few extra years, and that’s pretty difficult to think about. But, the doctors feel that she has a lot of things going good for her—No aortic narrowing, no brain anomalies, etc. Really, it’s a miracle that she doesn’t have anything else unhealthy going on besides her heart. All of that makes us and the doctors feel like she has a really good shot at reaching adulthood and beyond—possibly even a very “normal” life. (What does that even mean anymore?!)
Our meeting with the surgeon (Dr. Carlos Mery) went very well. We aren’t 100% sure that he will be available for her surgery when it’s time, but we’ve been told that it will be either him or Dr. Heinle, and I’m very glad for that! We feel good about all the surgeons there, but our “sources” have told us that these two are the best. I’m very thankful for “sources,” and very thankful that we had time to do the necessary research to put our minds at ease. I have learned that doctors tend to give you only the necessary info (so as to not overwhelm you) unless you ask very specific things. I have become pretty obsessed with research (duh), and I think the doctors have been surprised with how much information with which we’ve come to the meetings. I’ll just say…There were flashcards…and a binder. Some of my questions for the surgeon really surprised him, and I’m not sure how doctors feel about me being so blunt but…we are talking about MY BABY, so blunt is what you’re getting. I’m slowly getting over the awkwardness of asking tough questions, and the doctors will slowly get over the awkwardness of…well, me. We’re all in this together ;)
Speaking of awkwardness, the neonatologist that we met with told me to expect about 20 doctors/residents/students in the room when I deliver. So I decided to get a pedicure with a really bright color to distract from the obvious main attraction. That will work, right? If you didn’t see the blog post from earlier, I met Dr. Adachi’s (another pediatric heart surgeon here) neighbor last time I had a pedicure, and it was just so encouraging and such a God thing. So a couple days ago, when I was getting another pedicure at the same place, the women around me started marveling at my giant belly (it’s quite the conversation piece wherever I go), and the woman seated next to me started asking more specific questions:
“When are you due?”
“I’m getting induced on Wednesday!”
“And where are you delivering?”
“Well, we have to deliver at Texas Children’s because she has a heart condition.”
“Oh wow—I used to be a CVICU nurse there!”
“What?! No way!”
“Yes, so I know all about those babies. Do you mind me asking what her condition is?”
“Hypoplastic Right Heart.”
“Oh, so she’ll be getting surgery. Have you met her surgeon?”
“You’re kidding me! I’m one of his nurse practitioners, so I’ll probably see you next week!”
My jaw probably hit the floor. Houston is HUGE, there are a million nail salons, and twice in a row, I’ve sat by incredibly kind people who just happen to be very closely linked to our doctors. I can’t really explain the kind of comfort that has provided, but it is SO answered prayer! It really does feel like God reaching down and saying “I know this hurts, but I AM HERE, and I am listening.” He keeps sending us the most amazing people! So even if the worst happens with Sunley, don’t think for a second that your prayers have gone unheard—God has completely taken care of us already.
Today was Sunday, and Derek was scheduled to speak for both services at Deer Park. They had a luncheon in between the 10am and 1pm services, and we were bombarded with baby clothes, diapers, gift cards, and all kinds of thoughtful notes and encouraging conversation. I was so overwhelmed by the thoughtfulness that everyone showed. Afterwards, we went to Fairbanks for their 4pm service, and they held a special prayer service specifically for Sunley and our family. It was extremely emotional, and after the service we were given a GIANT basket of goodies and gift cards. The whole day was full of just exactly what Christianity should always look like, from both congregations – Completely genuine love for each other. Pretty much the most perfect way to “gear up” for what this week holds!
Wednesday is the big day, Lord willing. Right now, I’m at 1 cm and 50% effaced. My induction is scheduled for the morning of the 25th, Sunley will hopefully arrive sometime that day, and she’ll have to come out fighting. Unless God miraculously heals her (Yes, please), she will pretty quickly start turning blue and taking very fast breaths. The team of doctors will attempt to stabilize her (hopefully not too distracted by my adorable pedicure), and if they can get her stable in the room, then I should get to hold her for a short while before she is wheeled off to the NICU or CVICU. There are about a million different things that can happen, but the few things I am fervently praying for are:
1. Miraculous healing, because that would be pretty rad.
2. That she can breathe on her own without needing intubation
3. Breastfeeding success
4. Little to no sedation necessary. I just really hate the thought of a sedated newborn :/
I know that at least 2 of those are a giant long shot, but I’ve seen God do incredible things before. The best thing about being a Christian is KNOWING God can do anything, and the hardest thing about this situation is KNOWING God could have done anything. I don’t feel angry, but there are certain parts of this that are VERY frustrating—mostly the part where I don’t know if these surgeries will give Sunley a full life or not, and mostly the part where this is really going to affect all 3 of my kids. I spent the first month or two of this diagnosis process looking for a story of someone whose life wasn’t completely traumatized and altered by their child’s or sibling’s CHD and…it just doesn’t exist. The fact is, this is going to be traumatic to our whole family no matter how well or how poorly Sunley does. My kids will all be affected. So, I guess instead of trying to stop it from being traumatic, we just need to focus on teaching our kids how Christians handle trauma. I think we could end up doing some real damage if we tried to shield them from all of it, or pretend like it’s no big deal. I don’t want to go into it too much, because they both deserve their own privacy, but I can tell you that this process has already been a struggle for both Hadelyn and Ruger, and even if Derek and I do everything perfectly (which we won’t), there will be some negative side effects of all the instability and chaos. We are trying REALLY hard to give them some firm landing ground, but their world has been ripped apart too and that’s extremely painful to see. I will say, though, kids are a lot tougher than adults, and though they have their struggles, they are largely loving the adventure (and especially the pool at our apartment). And I am loving the big closets.
As exhausted as I am being 9 months pregnant and with 2 little kids, I’m so happy to have my babies here again. It was great getting a couple very normal-ish weeks of just the four of us. Mom arrived last week too, and we were ALL so happy to see her! There is nothing like having your mom carry you through the tough stuff. She and my dad have already made some GIANT sacrifices with their time to help us out, and I really don’t know what we would have done without them these last couple months. Mom is planning on staying through the first surgery, and will go home when things become a little more stable. Derek’s parents (who are keeping our dog in OKC by the way) are also coming for the birth, going back home to OKC for the arrival of ANOTHER granddaughter (yay!), and probably coming back for Sunley’s first surgery also. My youngest sister and her husband are coming for the birth, and we have tons of other family that will come when it’s a bit less crowded and hectic, and for when we need more reinforcements later on. My friend Lori Faber is coming this week to take some pictures of Sunley’s first few days, and that’s pretty much ridiculously kind and special. We are immensely blessed to have so many friends and family willing to just drop everything and help. I don’t know how in the world I could express what that feels like.
I was really worried when all of this started that I would be lonely here, and I haven’t felt that way for one second. Jamie, one of our best friends from Australia, recently moved to Dallas with his wife and family, and he made the drive out to visit us which was so encouraging. We’ve gotten to attend a meeting at Deer Park here with Cullen Smith and his family, which was just wonderful! The congregations here have been just so amazingly supportive, and we’ve picked up friendships right where they left off when we moved from here years ago. And we expect a lot more visitors through the rest of the year, too. I don’t think loneliness will ever be a problem while we go through this :)
Things are unbelievably tough right now, but they are equally sweet and meaningful. Derek and I are processing and feeling things very differently, but still TOGETHER, and our marriage is deeper and stronger than it was before-- I pray that it continues that way. I can’t speak for his feelings throughout all of this, because we are two different people, but I can say that I don’t feel scared. Maybe I should, but I just don’t. I’m not exactly happy about the situation, but I don’t feel anger, bitterness, or fear. I think the most “down” feeling I’ve felt is just frustration and feeling disappointed that I wasn’t able to dodge this bullet. Of course, there’s a roller coaster of emotions in any given hour—Part of that is the diagnosis, but part of that is just pregnancy hormones. Mostly, this week, I’m just excited to meet my little girl.
Photo below by Amy Sample of Lovebird Photographie