*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. She had a one week hospitalization for dehydration at 4 months old, then went home for a month. At 5 months old (now) she was admitted for low saturations.
WHERE DO I START. Today is Thursday, September 27th. On Sunday, the 23rd, Sunley had a really great day. She was all smiles, and everyone at church was commenting on how great she looked. I noticed that she looked a little bit flushed, and decided that I would check her saturations when we got home. I forgot, and didn’t feel like it was a huge deal because she always ends up being fine every time I check. Derek asked everyone to pray for her upcoming appointment, which was set for Wednesday, and said “Ya know, unless she throws a curveball, which she likes to do.” Sunday night, Dad and Oma came for a quick visit and stayed the night. We had SUCH a wonderful time, and Sunley was acting so happy for them. Look at these photos! It’s hard to believe that she was in the CVICU just hours later.
Monday morning, they left and Sunley continued acting happy, ate well, etc. Monday afternoon I remembered that I hadn’t checked her sats on Sunday so I decided to do a quick check while she napped. I was really surprised to see 66 for her O2 levels. I double checked her foot and got the same read, and checked again a few minutes later. I actually debated on calling cardiology because we had that upcoming appointment on Wednesday and because she was acting completely normal, and because I knew that the CVICU was moving to the new tower the next day. Last time we came in Dr Heinle said to me, “Always call. Always call. Always call…ALWAYS CALL.” So I called. And they told us to come in to the ER.
We got to the ER, and man do they move fast for single ventricle babies. I filled out just a little paperwork while Derek followed the nurse back. When I walked back just a minute later, probably 10-15 doctors were swarming her bedside. It made me a little nervous, but they were just being fast and very thorough, and that’s wonderful. They quickly had cardiology there and did an echo and an EKG, and got her on oxygen and IV fluids. Within an hour, they had gotten us up to a room in the CVICU…just in time for the big move to Legacy Tower 12 hours later! We got her stable on high flow of 5-6L and slept in recliners Monday night.
We got to see Sunley’s leftie bestie, Oliver, and lots of familiar faces. It’s bittersweet to be admitted, and of course I wish she was home, but I’ll admit it was pretty cool getting to see the behind-the-scenes move in action. Oliver was the very last baby moved over, and boy does everyone love him! Lots of cheering and hoopla when it was all said and done. As far as I know, the move went very smoothly. We LOVE the new digs and we were able to stay with Sunley Tuesday night.
Tuesday was mostly about the move and seeing how she did on oxygen, as well as making sure she didn’t have some kind of infection. She didn’t. She came off of high flow and seemed to handle it pretty well. But let me tell you, this baby is very much used to NOT having stuff stuck on her everywhere. She cried ALL DAY and most of the night Tuesday night.
Wednesday morning, we were told that the plan was to do a cath, and it took us pretty much all day to gather all of the details. There was a lot of debate of whether or not to even try the cath, and maybe just go straight to the Glenn. The Cath is a much less invasive procedure that goes up the groin to the heart. It does require intubation, but they are usually able to extubate quickly after.They can take measurements and check pressures while they’re in there.
In Sunley’s case they plan to also do a TEE (a transesophogeal echocardiogram) and they MIGHT attempt an atrial septostomy using a balloon catheter. If the balloon catheter works, then Dr. Heinle might not have to stop her heart during the Glenn, though she will still require bypass. If the balloon catheter doesn’t work, they will place a stent to open up the atrial septum. That stent will be removed during the Glenn, and her heart will need to stop beating for that. Our hope is that the balloon catheter will work, and this procedure will give her some more time to gain one more kilo before the Glenn. Outcomes are better when babies weigh at least 6kg, and Sunley is 4.7kg.
Of course, this Cath may not work at all to improve her sats, in which case we will doing a Glenn VERY soon (like maybe Monday). An atrial septostomy is usually done on newborns (or even fetally) while the septum is very thin and easy to pop. Because Sunley is older (5 months), her wall is very thick and even bowed a bit. So that adds some risk, and we are very prepared to hear that it didn’t work, in which case we will get ready for the Glenn. Because there is such a high chance of it not working, we really considered just skipping the Cath and doing the Glenn. But as soon as we heard that a successful septostomy could end up allowing her heart to continue to beat, it was an easy decision. I hate this “extra” intubation, but I think the risk is worth the possible payoff. Her last extubation was a little tricky (lung briefly collapsed etc), but I’m hoping that with her being older and so strong from all her “normal baby time” at home, that her extubation will go more smoothly.
Wednesday night (last night) we slept at home to get a good night’s sleep before her Thursday cath, knowing we’d need the rest. At midnight her nurse called us to let us know that we could sleep in because the cath had been postponed from its original 7.30am time. So grateful for this call, because we had planned to come in at 5am. We arrived at 9am just in time for cardiology rounds. We weren’t sure we could get her in today, but then at 11am a room opened up and they wheeled her back :) She is currently undergoing her cath now, and I’m updating on Facebook every hour.
Right after she went back, the charge nurse came by and had me take down all of my decorations, and I just about burst into tears. It seems so silly, but having the place have some of my pictures and artwork up has made me so much less sad. New tower also comes with new rules I guess…DUMB rules. Just sayin. But she didn’t say anything about decorating the crib….
There are even more details that I’d love to spill on here, but it has been quite a whirlwind and we are EXHAUSTED. Sunley is doing well right now, and we get updates every hour. We should know very soon if the procedure was successful. Thank you all for the prayers.