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.
Read MoreWe 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.
Read MoreWe 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!
Read More“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.
Read MoreSunley 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.
Read MoreDay 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!
Day 6 post op, April 24th:
This was Sunley’s last day as a 3 year old! She had a good day. We stopped potassium (thank GOODNESS), and CAME OFF OF OXYGEN! Her saturations are still in the low 89-91 range, but everyone is very confident that once we take out the chest tubes, those saturations will come up quite a bit.
Her right chest tube is still putting out quite a bit, but it decreased again today. We expect a big dip tomorrow because of her diuretics regimen she is on. We are leaving the left chest tube in for now, even though it’s done, so that hopefully we can pull both. Who knows, maybe even by Tuesday? Sunley went on 3 walks today, including a tricycle ride, and all of that should be good for getting rid of those chest tubes! She’s barely starting to talk to just a couple select nurses, but is much less reserved with Derek and me than she was just a few days ago.
We have planned a birthday party for her at the hospital tomorrow with siblings and two grandparents, so that should be fun! I also got to meet another heart mom for coffee today. Her son was just discharged from a few doors down after his Fontan, and it sounds like they are having very similar recoveries. He had surgery a week before Sunley.
Day 7 post op, April 25th:
Sunley had a great birthday. She got SO many gifts and visits, and I know she felt so special! She even got exactly the birthday cake she wanted, thanks to Madilyn Crouch, who lives nearby. She had balloons, streamers, and all the typical birthday things.
Our birthday party was certainly different than we planned, despite getting permission beforehand. There has understandably been a lot of miscommunication about visitor restrictions, since it’s constantly changing. When my parents and the kids arrived, even though we had cleared everything days prior, and over and over again leading up to today, the charge nurses wouldn’t let them in. I came out to the lobby to see why, and they told me that we could only have one person in at a time, and that the others would have to wait their turn, and couldn’t even stay in the lobby on our floor.
I felt like my reply was appropriately firm but still respectful:
“We cleared this beforehand so exactly this situation wouldn’t happen. And we will absolutely follow whatever rules y’all have in place. But just to be clear, if this is because of germ precaution, instead of everyone coming into one room and keeping everything contained, you would like us to go to the busiest floor to wait our turn, and use the elevator multiple times, which would put the germs everywhere and expose more people?”
They stared at me and said absolutely nothing. And for the first time in 4 years of multiple stressful days in the hospital, I finally cried in front of the staff. I apologized for crying, and told them I know they are trying to do the right thing, but I also said, “You HAVE to get everyone on the same page. Because they were fine to visit in ICU and literally no one knows what to expect day to day. Our kids want to be together, and we have no problem with the rules, but you have to tell us beforehand and stop just throwing it at us.”
I went into the lobby to break the news, and Ruger started crying, which made me angrier. Everyone else went to floor 3, the busiest floor, and I took Ruger into the room for birthday party #1. A few minutes later, the nurses came in and told me they decided Hadelyn could come in the same time as Ruger, but the adults would have to switch out. Fine, that’s what we did.
We had multiple shuffling, and trips to the elevator, and during one of those switches, the nurse came in while only my mom was with Sunley and stripped Sunley’s chest tubes. So I walked in as Sunley was crying and my mom was comforting her — not ok. It was done, so I didn’t say anything. We had a great day. Sunley felt very special and had a great birthday. And I LOVE TCH. But sometimes, yall. Sometimes.
We had visitors make a paper snowflake and sign it, and we hung them on the wall. Those are keepsakes for sure! We also have had nurses and doctors sign one of her hospital gowns, so we’re definitely keeping these things forever.
At rounds this morning, the team wasn’t really happy with her output in her right chest tube. It just hasn’t decreased as much as they’d like it to. Her BUN was up also, and so we can’t add diuretics right now. They’re hoping that the elevated BUN is from all of the Toradol we used, so that is gone now (and she seems to be doing ok pain-wise without it). We will pull the left chest tube tomorrow (Sunley calls them her noodles, and she does NOT want anyone pulling them) and revisit the diuretics plan to get her tubes to drain more. There was talk about going on a very strict no-fat (or was it low-fat) diet, but we aren’t there yet.
When we told Sunley about the chest tube tomorrow, she seemed really sad. After a couple hours she said, “Mom, I don’t want them to pull out my heart!” Poor girl! No wonder she is so scared!
Sunley did fantastic with PT today, and was even a bit talkative with the (female) therapists. She is hoping to visit the playroom in the morning with the Child Life team. Sunley wore her biker jacket and new sunglasses on her ride today, and told the PT that she is faster than her brother, Ruger.
She is doing really well. The older kids are being cared for, even though we deeply miss them. We visit them most nights to tuck them in (we switch off who goes home), and then come back to sleep at the hospital. We are INCREDIBLY blessed to have enough support that Derek and I can do this, together.
I met two other heart moms today, and I really can’t express how important those relationships are to me. I need those women in my life. One mom I met tonight is the mother of the sweet one who moved our surgery date. You could literally see the strength in her eyes, and I already feel so blessed to have met her. Heart moms are some of the fiercest people I know, and I feel stronger every time I am with them.
We also met a couple other patients on the floor, and we are all buddies now! One other little girl just had her Fontan on the 20th. They are from overseas, and came to TCH specifically for this surgery. I love that Sunley will know other kids with similar hearts (although we have yet to meet one with Sunley’s specific anatomy!).
This time of year brings back so many memories of my pregnancy with her, and our introduction to heart parent life. The photos below are of the Houston sunset, exactly four years apart on her birthday. Regardless of everything, there is evening and there is morning.
Happy birthday, Sunley Summit. I would choose you and your spunky biker heart over and over and over again.
Today was a new day, thanks to Toradol. This blog post could be an ad for the stuff — We’ve been wanting to add it since surgery, but her platelet count was too low until late yesterday. And boy are we happy it’s on board now! We’ve been waiting for this corner turn for what feels like much longer than 4 days. Sunley woke up and said “I haven’t had breakfast!” and we knew it was gonna be better. She still isn’t eating enough, and has lost a little weight, but her demeanor is steadily getting better and better. Look at this smile she gave us this afternoon:
Sunley has 2 chest tubes left in her. The right one is still producing quite a bit, but the left one looks just about done. Surgery prefers to wait and pull them both at the same time, since removal is definitely traumatic, but if the right continues for a while, then we will probably decide to pull the left one before the right. Most of Sunley’s pain is coming from the left chest tube, according to her, “in my heart and in my back.” Massaging under her shoulder blade seems to help a little. The tubes are also sewn really tightly at the entry point, which is obviously necessary with a toddler, but it also makes dressing changes on them pretty painful (you have to slide thin patches of gauze underneath the tube, while trying not to move it). And of course stripping (emptying) the tubes seems to hurt maybe even more than the left tube placement.
Sunley went on 3 walks today, and rode a tricycle around the halls. It was adorable, and she actually WANTED to get up and ride the trike! She was way more talkative with Derek and me, but of course still totally silent around the staff. Girl’s got major trust issues right now, and no one blames her for that! Tonight, while our nurse was stripping a tube, Sunley got so frustrated and looked at me and said “She’s hurting me!” It seems like no matter how much we explain it, the pain for gain concept is a lot for a 3 year old.
We tried to come off of oxygen today, but I really think that won’t be successful until we get the tubes out. The rate at which the tube will slow down is totally unpredictable, but I have said over and over, “We don’t care how long they stay in — the priority is that we don’t have to put them back!” and everyone agrees, of course.
We’ve added a bunch of lasix, tummy meds, and unfortunately Potassium. Several of the meds taste pretty bad, but nothing compares to potassium. She has thrown up twice after taking it. Because of all of this, we have spent hours convincing her to take any meds. How do you get a traumatized 3 year old to take oral medication when they are just flat out refusing? Wish us luck. Every part of recovery has its own unique challenges, and taking meds will probably remain a challenge for a while. Fortunately, Toradol and lasix, arguably the most important ones in her regimen right now, are administered via IV.
I have more thoughts, enough feelings to fill a book, but I’m gonna cap the update here tonight. I’m sure recovery will start moving at a faster pace now!
We had another hard day today, but Sunley is still doing really well — we have had no real medical “hiccups.” The biggest challenge for us right now is her pain management — seeing Sunley be completely silent (except of course when she’s REALLY hurting) has been so hard. She is just emotionally totally shut down, and I don’t blame her! I have to remind myself constantly that it has only been 3 days since open heart surgery, and the kid still has two of her chest tubes hanging out of her, so of course she isn’t energetic yet!
We’ve started a 770cc/24 hr fluid restriction, which is typical for Fontan recovery. There was some miscommunication getting there, some on my part and some not, but it was all resolved today, and I was happy to see that we didn’t even get to 770 today. I think we ended at around 700 cc for the day, so Sunley is getting everything she wants, which helps her parents! The rest of her recovery will likely be centered around finding the balance of diuretics and fluid intake, and all of that hinges on her chest tube’s output. Once we get those chest tubes out, we’ve been told recovery usually speeds up big time. We are also hoping that after we remove them, breathing will be less painful, and her saturations will go up.
Last night, Sunley woke up around 4 am in a lot of pain, and due to that pain, she was desatting into the high 80s. This lasted for a few hours, so we did end up bumping her oxygen back up to 1 L. This afternoon, we took it down to .5, but now it’s back up to 1. Her RT came by tonight right before bedtime and said that her breathing does sound a little diminished, and her cough sounds a little worse, X-ray is just a tad hazy, but still no one is super concerned. Walking is the best medicine right now, and we hope that any little issues will be resolved by moving. This isn’t good news to Sunley, but it’s the only way home.
The walks are definitely the hardest thing right now for her. All the pokes, yucky medicine, etc is bad, but Sunley absolutely hates it when we tell her it’s time to get up. She was in so much pain today, but we really had to do a walk, so we waited until 11am because there was a “puppy party” with Bailey the therapy dog in the family room on this floor. At 11, we had Sunley sit up in bed, and it took her about 10 minutes to stand up. I was in the process of ordering Sunley’s lunch, so Derek and our PT worked on moving cords around, getting the pole set up, and getting Sunley ready to move while I was on the phone. I was on hold for about 15 minutes, and during that time, Sunley started desatting (again, just from pain), of course screaming, and then she suddenly cough/puked all over Derek and the PT. I’m sure you can imagine the chaos. I finally just hung up, we got the mess cleaned up, and Sunley fell asleep immediately, just leaning on Derek. After all of that, we realized it was 11:45 (at this point we had been trying to walk for 45 minutes), and so we got the wagon for Sunley to ride to the puppy party. When we got there, Bailey (who was wearing a yellow bow specifically for Sunley) gave Sunley some sweet snuggles and did a couple tricks for her. Sunley was totally shut down, but we invited Bailey to Sunley’s birthday party on Monday, and Adair, the trainer, mentioned that Bailey could wear a unicorn costume. Sunley immediately said, “Oh I love unicorns!” And I almost cried — it was so sweet to hear her happy voice again! That was one of only 2 happy sentences today, but she’s still in there, and I’m sure Sunley will be back to her feisty self soon.
We have had good nurses for this entire admission, and it has made such a big difference for us! They have really had Sunley’s back and put her first, and it is just really wonderful from a parent’s point of view. Sunley has such a big team here, and even the people who aren’t technically part of her squad on paper…they’re still on her team. The visits we’ve had from her past doctors here every day have absolutely filled our spirits, and those visits give us both the boost we need to keep looking ahead.
Day one I will sit in darkness
Until the light of your grace shines through
I will wonder where the light comes from
Until I forever shine with you
Day two I will gaze
At the openness above me
Waiting for it to fold open
Waiting for it to pull me home
Day three, amazed at what my eyes have seen
The beauty of all mysteries
Life about me, gardens abundant
Day four my God what have you done
The swirling lights are beckoning me
To come
Day five I will fly in the skies you have made
I will swim to you until my body gives out
Day six, oh day six
There is breath within me that I can’t explain
I will stay here until you call my name
I won’t rest until the days are up
Until the seventh day
I will work for you
Until the seventh day
I won’t find rest
I didn’t update yesterday because we were all just way too exhausted to do anything but sleep by the end of the day, so I have a lot of news to report! But before I do, we have a major answered prayer that I wasn’t expecting: Siblings can visit again!! So today Hadelyn and Ruger were able to see Sunley. It was much needed, and I’m hoping it helped everyone.
Yesterday was our first full day post-op. Even though Sunley was alert and taking on Monday after surgery, Tuesday she really seemed to totally shut down, and even throughout today we couldn’t get any words out of here — sometimes not even a nod to a yes or no question. It’s been really hard to see her like that. The only time she really spoke much Tuesday or most of today was when we made her get up or when the nurse stripped (emptied) her chest tubes, and of course then it was screaming and not really talking. Lots of begging to stop and go home and “No I’m not doing it!” or “I think I should have never come here!” There are no words for how absolutely devastating it is to see your spunky 3 year old like that.
Sunley got one of her three chest tubes out today, as well as her central line (the one in her neck). They were both very painful and required being held down, but the central line was especially bad. It was taped all over her hair, and was attached by a few very, very tight stitches, which made it super difficult for the nurse to detach. She did great though and was so sweet and patient with Sunley.
All of those moments will be etched into me forever, but I pray that’s not the case for Sunley.
We have had really good nurses in the ICU, and our nurse Abby actually got Sunley to have a short conversation with her this afternoon. It was absolutely beautiful to see Sunley come out again a little bit. Although we had great nursing care, I was a bit frustrated with a lack of communication with and between some of the other team members on the unit, so I’m really happy that just a couple hours ago, we got to move to the step floor! They are currently having a miscommunication about Sunley’s fluid restriction, and I’m pretty much done with the miscommunications, so I told our new nurse that if anyone wants to limit her fluid, they need to come talk to me in person and get it straightened out.
Fluid restriction is common with Fontan recovery, and we did have some on day one, but it has been lifted since then. Sunley’s Fontan pressures number (I think it was the CVP) was consistently super low, so the team decided to lift all fluid restrictions for a while. I’m sure we will still end up on restriction, but for now the priority is keeping her hydrated and beginning to fill that belly with food!
Back to yesterday, Sunley was able to get up and walk around half the unit! I mean, we definitely forced her, and she screamed the whole time, but she did it. And it has definitely helped getting fluid off. Today she walked again, and then sat on the couch with me for about 45 minutes. It was really, really hard and I hate that she has to do it, but I’m very proud of her.
I realized as we were leaving the CICU today that if things go well, that may have been her last admission there. And I have been super emotional about it ever since. We have been inpatient at TCH 6 or 7 times, and have had about 12 rooms here. I don’t think I can really explain all of the conflicting emotions of that, and I think if this wasn’t a lifelong condition I might feel differently. I feel super guilty for having any feelings of sadness leaving the CICU, because I am obviously super happy that Sunley is doing well, but there are huge chunks of me in this building and on that floor — pieces that I can feel only when I’m here. And so many weighty memories, good and bad. The person I was before I was a heart mom died a long time ago — it feels like an old parallel universe, and I can’t even imagine being her again. TCH is the symbol of that process for me. So leaving the unit and so many people that have been such a huge part of our journey, knowing we may not ever be back — it’s just hard, even though it’s objectively and obviously a very good thing for Sunley and for all of us.
We have had SO many visits from familiar faces, and again I am floored at the amount of people who remember Sunley — even people who only had one or two days with her. Those visits to our room have been better than any therapy I could ever have. There are spaces in my heart (probably in my full-grown right ventricle) saved especially for those souls. We can’t see the angels that fight for us behind the veil, but the people who have chosen to fight this journey with us are the closest thing to angels I will see this side of heaven.
Besides the team here, we have so many joining the fight in different ways — people sending us gift cards, grandparents caring for our big kids during the day, bikers (you all know about them!), and so many encouraging messages. I am really missing our “posse” of heart parents from 2018, before private rooms in the new tower, before COVID restrictions, etc. but this is a totally different chapter with a toddler, so it’s not really comparable. And again, those visits from our old teams make all the loneliness of hospital life so much less!
We’ve seen lots of yellow Sunley t-shirts around the hospital this week, which is just a bright and happy thing to see. They will be on sale until May 31st through Write With Light Project, and they benefit the Fontan Go Clinic here at TCH, so if you are looking for a way to help, this is it!
I know all of the photos of Sunley show her looking really sad…well, because she is. We have seen one smile since surgery. But I really feel like we’ll be turning a corner soon and seeing more and more glimpses of the real Sunley!
