*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now). We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so the game plan is to have a PA banding, Glenn, and Fontan (a series of 3 open heart surgeries).
Sunley Summit has been home for almost a MONTH now! There are just no words to express how intensely grateful I am for these weeks of normalcy. No monitors, needles, or special treatment (besides a very small diuretic dosage and weekly doctor’s appointments). No scars, beeping monitors, or sore backs from a hospital chair. The roller coaster of emotions I go through each day are nearly impossible to explain. I can feel so many contradicting emotions at once. I feel completely fine and normal all the time, and also sometimes sickeningly frustrated, or homesick, or guilty. (Always tired, but that’s expected with any number of small humans in the house.) The only way I can try to explain those moments of grief is like running a complete sprint straight into a brick wall, then immediately standing up and running again, knowing full well there is another brick wall coming. I’ll be doing something completely normal and not thinking about anything Sunley-related, and then all of the sudden I remember the stupid, stupid CHD and I feel everything at once. Physically, it feels very heavy, makes me lose my breath or close my eyes, and then it’s just gone and I go back to what I was doing. I kind of wonder if those moments will ever stop, but I suspect they will just get less frequent and easier to deal with. I don’t really cry very much anymore, and when I need to I can usually reserve it for when I’m alone (which with 3 kids is only when I take a shower). I guess I’m still in this very stressful situation, but it really has started to feel very normal, which I’m grateful for, and which other heart moms assured me would happen. I know people probably look at our life right now and feel sorry for us, but we really are very happy still. We just also have this huge thing happening that we need to get through. I’m so happy that Sunley has made it five weeks with no surgery, but now her body just needs some help.
We had a cardiology check-up today, and despite feedings every 2-3 hours and adding formula to her breastmilk, Sunley just can’t gain any weight. She is only an ounce over her birth weight, making her 7 lbs 2 oz. Her cardiologist is confident that her breathing and weight gain will drastically improve after the PA banding surgery, so it’s just time. The doctors would love for her to be 8 pounds before surgery, but obviously that’s just not going to happen. We’ve prayed for all of her medical decisions to be obvious, and once again God has answered that prayer: Sunley is very obviously ready for surgical intervention.
Next week, we should hear from the surgeons and get a surgery date. The recovery period for a PA banding surgery SHOULD be about 5 days, but every heart baby is unique, so that could definitely vary. We were told today that her surgery will be sometime in June, and hopefully within the next couple weeks, but we have to see when they can fit us in. I’m getting a lot better about being pushy and asking difficult questions with the doctors, which is beyond uncomfortable for me. But everything about all of this is uncomfortable, and I’m getting used to finding my groove in awkward situations. Insert shrug emoji.
We’ve had a really great last few weeks. A few highlights:
Sunley got to go to church on Mother’s day, and we’ve been to every service since, with all 3 kids in tow – makes my heart so full!
We got visits from family and friends!
Ruger had his second birthday.
We had a play date at the Spradley’s, complete with blackberry picking.
So many snuggles and so many fun days!
The older kids are constantly on my mind as well. We got to have Derek’s mom here for the last 2 weeks while my mom went home to Midland and they went swimming I think every single day. I’m so glad my mom got to be home for a little while (especially since her mom ended up falling and needing her—long story, and she’s doing much better now, thank you Lord!) and I loved seeing Sunley getting to bond with Derek’s mom :) I’m desperately trying to give everyone the attention they need, and trying to keep the house <relatively> clean, etc – and having live-in help has been amazing. But no matter what I do, something is always lacking (usually kitchen-related). Even if we’d had a healthy baby, I think this would be the case. Life is just never going to be perfect, and that’s ok. Everyone is happy and taken care of right now, even though nothing is getting my full attention. This blog post has taken about 4 hours to write, due to the LIFE that 3 kids bring into a house, so if it’s all been a bit scrambled, sorry-not-sorry. Repeat shrug emoji.
There are literally a million different possible outcomes for Sunley, but I’m praying for less worry, more happy. I’m praying for her doctors, for her body, for her siblings, for our marriage, for patience, for strength, for clear decisions, for the complexities of all the decisions to be made in the fall (kindergarten etc), for a full lifetime with all 3 of my kids, for no more major health issues in our family, for Jesus to return before anything gets worse, for more faith. And the list goes on, as it does for any mother. Please keep praying for us!