Home At Last

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We have been home for nearly 2 weeks now! About 10 days or so before we left, I had a really out-of-the-blue opportunity to speak with Lauren Simonetti from Fox News on her podcast, “We’re Momming Today” about the nonprofit and about Sunley’s story (Link here, if you’d like to listen). Trying to condense my thoughts into 20 minutes was hard for me (if you know me then you know I can talk forever), but the whole experience was amazing. The fact that a New York reporter from Fox News would take the time to do that with me just absolutely blew my mind. I’m a stay at home, homeschooling mom of four — I do not have time to start a nonprofit, but I did it because I just knew I needed to lay some groundwork for God to do what He wants to do with this. And already, look what has happened! We have over 30 lemonade stands going up in 13 states now, we’ve sold hundreds of t-shirts and raised thousands of dollars to support a clinic that didn’t even exist 5 years ago. When will I stop forgetting to just let God take the lead? When amazing things like this happen, it makes me wonder how in the world I ever fall into old patterns of control and frustration. But we all do it. Thank goodness for fresh starts.

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Post Op Cardiology Check Up

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We've been in Houston for a month now, and as much as I would love to keep the slow, focused pace that we have here, we are all definitely ready to go home. Sunley had a checkup with her cardiologist this week, and it went well. Her oxygen saturations seem to have leveled at 96-97 which is great, and she's starting to gain back some weight after losing a bit during the hospital stay. She still looks super skinny to me, but I'm sure with time everything will come back. She's running and dancing again, and it's pretty much the most beautiful thing ever.

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Palliative

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I think I'm long overdue for a recap on Sunley's condition, and what exactly this Fontan procedure did for her – and what it means for her health in the future. The surgeries she has had are called “palliative.” That means that none of these cured or will cure her heart condition. No one has ever been able to give us a very accurate prognosis for her because there is very little data

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I Heart Mother

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Sweet new heart momma, I know. I know this is not the Mother's Day you wanted, because I too have spent this special day watching my newborn baby struggle to breathe. I know the weight of the diagnosis you've received is overwhelming because I too have been overwhelmed. I know the sounds your voice will make as you grieve because I have made them, and I know the way your whole body will shake because I have shaken.

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Seventeen Days Post-Op

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We have been out of the hospital for almost a week now, and have found some weird version of normal – somewhere between a medical crisis and a vacation. Sunley's personality is returning to us more and more each day, as is her energy and her weight. She's already gained back just under one pound after losing 2-3, I think, in the hospital. She is singing in the car, and today at her follow-up she was talking the nurse's ears off! Don't get me wrong, the trauma is there – the word "noodle" will probably forever be a trigger for her – but she is still my Sunley, now with a few more story-telling battle wounds. I think you could say the same for Derek and me, although our scars are less visible.

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Out of the Hospital Part Two

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We were dreading the process of getting discharged yesterday, but it actually went very smoothly! The morning started with a roller coaster. Our PA on the floor that day (actually a friend of one of my old high school buddies!) came in and told us that her potassium was actually lower, so we knew that likely meant at least another day in the hospital. We had a big, long discussion about it — the benefits and risks of going home with low potassium. A few minutes after he left, he came right back in to tell us that the results we were looking at just hadn’t been updated yet with morning bloodwork! Potassium was in normal range! Back to our plan. The only thing that would keep us in at that point would be a bad X-ray. Later that day, we got our good X-ray and clearance to go home!

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Out of the Hospital Part One

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“You are so lucky you aren’t single ventricle, because those kids have such low quality of life, and honestly, if you were single ventricle, I’d have to tell you to expect to bury her by age five.” This is what a doctor in Dallas said to me after misdiagnosing Sunley (she thought Sunley was biventricular with DORV and mitral atresia) while I was pregnant. She called two days later, crying, and telling me that actually Sunley is single ventricle.

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Possibly Maybe Going Home Tomorrow Maybe

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Sunley has a very small pleural effusion in her right lung, and a minor pneumothorax (like, tiny) in her left side, but neither of those things should keep us in the hospital unless they get worse, which no one expects. We will be going home on a pretty aggressive regimen of three different diuretics, potassium, aspirin, and pepcid for her tummy, as well as sticking to our fluid restriction of 770 cc for the next 4 weeks at least.

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Day Ten

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Day 10 in the hospital, 9 days post-op!

Another good day, with discharge on the horizon! Sunley woke up feeling terrible. She was super lethargic and pale, and had some tummy issues that were causing her a lot of pain. She is woken up each morning when it’s time for a finger prick, so that’s a rough way to start your days anyway. We had planned to do PT at 9 with Candace, and she was not having it today. She rode the bike a little bit, but didn’t want to participate in any games or play with any toys. Poor Candace has only gotten to work with Sunley on her bad days! Hannah and Denzel got the good days. We brought her back to her room, and she fell right to sleep for about 3 and a half hours. After that, though, she seemed to be much better, so I don’t know what it was, but it was relatively short-lived.

The biggest news of the day is that Sunley is NOODLE FREE! Surprising to everyone, her chest tube output dropped significantly, enough to go ahead and pull the tube. It was terrible, but it’s over now. The only thing Sunley has on her now is her pulse ox probe and her IV. Her chest Xray showed a little improvement on the tiny pneumothorax that they saw, so no real concerns there. 

After she started feeling better, we went on several walks, including exploring the skybridges, and played in the Child Life playroom for a bit. Our next door neighbor went home today, and we expect (loosely expect) to be closely behind. I guess we’ll just be watching her numbers over the next couple of days to make sure we go home on a balanced amount of diuretics. They will be weaned outpatient by her usual cardiologist.

Unfortunately, taking oral meds has become just a really difficult task. Sunley had to go back on potassium today, the worst oral med known to heart toddlers, and immediately threw up SO much when she took it. She has thrown up every single time she’s had potassium. So now, we are giving the tiniest bit every 20 minutes until the whole dose is up. And even that is such a fight.

This entire Fontan recovery has been so incredibly draining, and I doubt that being home will actually be easier at first. But we are so grateful that everything has progressed without any major complications. Sunley is ready to go home and be with her siblings. I’m ready to go literally anywhere for 24 hours by myself and sleep, but that won’t be happening for a while. Seriously though, I am looking forward to all four of my babies being in the same place again. Davis, the youngest, is especially having a hard time being away from her Mommy and Daddy. I recorded a looping video of me singing some of her favorite lullabies that G (my mom) plays for her at night to get her to go to sleep.

Derek and I have been switching off going home each night to tuck in the kids before coming back to the hospital to sleep. It’s been really great for the big 2 kids, but for Davis, I actually think it’s made it harder. She will NOT go to sleep when we put her down, and she’s been sleeping in a big bed with her sister or grandmother every night that we’ve been gone. Not sure how that’s going to play out when we get home.

Sunley’s saturations have been around 94 to 95 today, but she is still dipping towards the end of the really long walks. It will definitely take me a little while to get used to her new numbers, and to understand what’s ok for her and what’s not. It’s always overwhelming at first, but we’ll find our new groove eventually.

After her noodle removal, Sunley was finally able to give me a good, wrap-around, normal hug! It was so very sweet, but I also felt for the first time how skinny she has gotten. She definitely looks thin, but to feel the “lack of squish” was so sad. We added pediasure yesterday, so hopefully I’ll get back some of that baby softness.

This recovery reminds me a lot of her recovery after her first surgery, the PA Band (although that one was much longer, if things this time go as planned). The whole recovery was about finding the balance of diuretics, and Sunley lost so much weight, most of her hair, and just looked rough. Although, I didn’t really realize how rough she looked until months later, looking back at pictures. This admission is much worse, even if it’s shorter, because TODDLER, and because she has, ya know, real life outside the hospital to which she can compare!

Hoping for another good update tomorrow!