*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 on June 11, 2018 she had a PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries. Sunley spent her first 6 days in the NICU, went home for a while, and then spent 26 days in the hospital after her first surgery at 6 weeks old.
Tomorrow, I will be 29 and Sunley will be 2 months post-op, and to say that my life has taken some interesting turns in 29 years is an understatement. I have had some pretty wonderfully epic adventures, but nothing compares to this one. My big babies have gone to Midland now. They left yesterday morning an it HURT. I’m so grateful that they were SO excited to go, because it made the goodbye so much easier. I know they’re in great hands with my parents, but it is about the least natural thing for a momma to be away from her babies for such a long period of time. “Grateful” doesn’t even begin to describe how I feel toward my parents. Derek will fly on Southwest to Midland Sunday evening and take Hadelyn to her first day of Kindergarten, and I’m glad he can do that. I don’t expect to see the kids until their first trip back here on August 31st, which is 3 weeks away. In the meantime, I’m trying to not just be sad and waste the opportunity to develop some better eating/exercise habits, although the temptation to eat donuts and watch Netflix ALL day is strong. This is my chance though. I live one floor above a work out room, and across the street from the prettiest running trail in Houston. C’mon Liz. This is NOT the time to fall into a sadness cave and procrastinate! I got most of my crying out before the kids left, but I will admit I got home to their empty room (and Haddie Mae’s beloved sponge on the kitchen counter) and it made me pretty frustrated and helpless. The summer just went by so fast, and a month of it was spent with us in the hospital and not really “with” the kids. But this is where we are, and it is temporary.
Hadelyn has mostly been really happy about going to Midland. The last night they were here, Derek and I were spending time with the kids and Hadelyn asked, “Are y’all just tricking me? There’s a hospital in Midland, and do you just not want to go home and just stay here?” In other words, she thought that we COULD be in Midland, and just didn’t want to. It pretty much broke my heart, but I’m SO glad she asked so we could have the opportunity to clear that up! There have been a few times that the effects of all the instability and change have definitely made themselves known through the kids behavior, and it really pains me to see that. I’ve spent the last couple weeks trying to “train” Hadelyn how to react when she gets really sad or angry. Not sure I’m doing any of it right, but I had her memorize a phrase for when she starts missing Momma or getting really mad:
A lot of things are different, but three things are the same: 1. Momma and Daddy love me 2. God will always keep me safe, and 3. I am a good girl.
She loves saying it, and I hope it will stick with her at least enough to feel just a little secure. And I’m praying that God just fills the gaps that the inconsistency has left in my kids’ lives. At least I know that’s one prayer He will always say yes to: “Please help my kids feel safe and loved.” I don’t think God says no to those prayers.
Now for the medical update since our cardiology appointment yesterday — Good news first: Sunley has hit NINE pounds!! We weigh her in kilograms, and officially she is 4.110 kg, which works out to 9 lbs 0.96 oz. I am relieved that she isn’t losing weight, but her doctors all agree that she needs to be gaining at a more rapid rate, and that she needs to be taking in more volume per feed. Right now, she gets 80ml bottles of breastmilk fortified with 1 tsp of Similac Total Comfort, which should make it 24 cal/ounce. She doesn’t always finish her bottles though. Also, the doctors want her to be taking at least 90ml, and our cardiologist would prefer her eating every 2 hours instead of every 3. Unfortunately, Sunley just will not do 90, and especially won’t do every 2 hours. In addition to all of that, they tested my breastmilk and it is only 17 calories per ounce instead of the typical 20. They referred to my milk as “skim,” so that could definitely be the issue. While we thought we were fortifying the milk to 24 calorie, we are probably only getting it to about 20. And Sunley’s tummy doesn’t handle any fortifying heavier than that. All that to say the new plan is to try and squeeze in some extra feedings, fortify additionally with MCT oil, and give her 1-2 formula bottles a day that don’t include breastmilk. I told the doctor, I’m pumping because I want Sunley to have the health benefits of breastmilk. So, if breastmilk is not what will get her to a healthy weight, then I’m all for switching to formula. None of us want that, but it may be what we have to do. Yet another “mom-opinion” of which I have to let go. We all decided that we don’t need to make the switch yet, and even if we do eventually go to formula, she can still get 1-2 breastmilk bottles a day to get the benefits she needs. My goal this whole time has been to pump for a year, and end up with a big enough freezer stash to give her one cup of breastmilk for a year after that. (I guess I’d have to pump until she is 18 months, since frozen breastmilk only lasts 6 months) So she would be getting at least some breastmilk for 2 years. I can still do this if we end up switching to formula, and maybe even have some to donate (although who wants 17 calorie milk?). Donor milk will be something I look into if we end up needing to switch, but I think it would be pretty hard to acquire, given that the very small preemies get first dibs (and RIGHTFULLY so!). Side note, if everyone donated just a little milk (and organs haha) our lives would be a tad easier. Just a little CV humor for ya ;) The 17 calorie thing is a little hard to take, because I’m already painfully aware that my body was unable to build another healthy baby heart for whatever reason, and now my body cant even provide the milk she needs. I know none of that is my fault, logically, but it’s incredibly frustrating. And of course I wonder a lot of “what-ifs,” but that’s a downward spiral that I just can’t allow myself to dwell on.
Sunley’s echocardiogram looked good, so we know her weight gain is not a cardiac issue, and that is good news. Her sats were even 81 at the appointment which was just nice to see, given that they are usually low 70s. Our next appointment is August 30th, and if she is still having trouble with weight gain, she will be admitted and we will go from there. I’m guessing that would mean an NG tube, although no one is trying to jump there yet. Did you notice the date? August 30th. That’s the day before the kids are supposed to come visit us. This makes total sense because WE TRIED TO MAKE PLANS! HA. If she is admitted, I don’t think I’ll want the kids coming that weekend. But we aren’t there yet so I’ll worry about that if it happens. Honestly, I feel like her weight drop was due to the diuretics increase recently, so I’m hopeful that now we are back on track. Hopeful, but not sure. I’m surprised that the doctors don’t want me weighing her every day. I think they have probably seen parents get really sucked in to the numbers and miss out on all the good stuff, and I’m grateful that they realize the importance of quality of life. I am super tempted to go get a baby scale from Target, but I will make myself wait until her weigh-in on the 30th. The plan stays the same whether I weigh her daily or not so there really is no point. The heart center moves to a new building on September 18th, and the group of patients transferred over there apparently get gift baskets, so we are pretty sure Sunley just wants one of those baskets ;) Sunley, Momma will get you a basket if you just gain weight!!
We can’t wait to go home, but we also want Sunley to be able to wait a long time for her surgery, and those two emotions directly conflict. It’s weird to be anxiously waiting for your baby’s heart to start failing (again). There’s a lot of very unique emotions that have come with this process, that you can only fully understand in this bubble, and we have been so blessed to meet other families going through this single ventricle process with us. We have been blessed through all the Christians praying for us, checking in regularly, sending us dinner, gift cards, or just a card of encouragement. I have kept every single card we’ve been sent, and I’ve tried to keep a record of the tangible ways in which people have helped us, but our support system is so vast that I’ve left out a lot. We are SO blessed. And as horrifying as this can be in some moments, it’s also so incredibly refreshing to be forced to re-prioritize your life. I love simple moments more than I ever before. I love the ways that Derek and I have been able to restructure some family routines and goals and simplify our parenting. His working from home has been so wonderful, because he always joins us for breakfast and lunch. Just having a couple hours more with him every day has been great for all of us, and I’ll definitely miss that when we go home.
We have LOVED having some fun visitors lately! I've really missed my mom being here A LOT (someone go tell 16-year-old me!), but since she left we've had Derek's mom, my aunt, and some really wonderful friends who made the trek out to see us! I can't describe how good it is to see friends FROM THE OUTSIDE WORLD here. So truly wonderful and refreshing, and spiritually so SO encouraging.
Praying for weight gain, praying for happy kids in Midland, praying for less procrastination, more energy, more focus.