Sunley's Second Emergency Visit Day 5

*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 she was hospitalized for low saturations, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy).

The heart cath took about 4 hours. We waited mostly in our room on 17 until they called us upstairs for her post-cath consult. We waited up there until Dr. Qureshi (our favorite interventional cardiologist, or “cath person,” as I call them) came to talk to us, and the Brett Kavanaugh hearing was on the TV in the waiting room, so that was SUPER relaxing ;) The heart cath went as perfectly as we had hoped. Dr. Qureshi was able to perform the atrial septostomy using a balloon catheter and she ended up having saturations in the 80s! In addition, her pressures all looked great for the upcoming Glenn. Great news all around! She was also extubated before we even got back to the room. Just so wonderful. She’s a little hoarse from the intubation/TEE but that’s to be expected, along with a bit of a wet cough, so we are hoping that clears up soon.

She is doing so well, in fact, that they decided to discharge us instead of going to step up!! I think she might have been the first or one of the first discharges from Legacy, but there was no fanfare so maybe not ;) Before we left, we went over to Oliver’s room to say goodbye. They’ve never gotten to meet, so their mommies were pretty happy. They’ll grow up and remember none of this, but these are such important days for the rest of us. I left my coffee creamer up there in the fridge, but somehow I’ve survived ;) Floor 17 can consider it a selfless donation. We have been home now for about 12 hours, and boy is she loving it! She’s been rolling around on the floor for most of those hours. There’s nothing like being wire-free.

Sometimes at the hospital, you’ll see families who are expecting a heart baby, holding the red heart center folder, taking a tour — sometimes you’ll exchange knowing glances, and I wish I could tell them it’s not as scary once you’re really doing it. I remember our tour through the CVICU and mostly what I remember is seeing REALLY tired parents, which was pretty intimidating. But once it’s YOUR baby and YOU’RE doing it, it’s just more doable. Not easier, not less exhausting or less horrible than I imagined, just doable.

Before we left, we got Sunley officially on the schedule for her Glenn with Dr. Heinle. We are hoping for surgery on November 6th! This is a very penciled-in date. Surgery schedules change ALL the time. Also, it is very plausible that Sunley’s septostomy opening will start closing, and we’ll be going back to the hospital. Pretty much, any heart issues that send us to the hospital between now and November would most likely result in a Glenn. We are waiting because we are hoping she will gain some more weight. From here on out, we won’t know what our next day looks like, but of course we are hoping to stick to the November 6th plan. We also CAN NOT let her get a cold. A runny nose or fever could put off her surgery for 4 weeks, and we don’t want to be in a situation where her heart needs a Glenn, but a runny nose doesn’t allow that to happen. It’s a little more scary knowing that Sunley’s surgery will be during flu season. So we are buckling down again, and treating her like a newborn. We’ve also decided it would be best if they kids don’t come visit, since they both have allergies, runny noses, and are exposed most days to school germies. I can’t really explain how painful that decision is. I already haven’t seen them in a month. November 6th is five and a half weeks away, and Sunley will have at least 6 weeks of recovery after that. That’s a long time to not hug on my big babies. We discussed bringing them here to a hotel just so I could spend a day with them, and we may end up doing that, but we aren’t sure yet. So pray that they DON’T feel like their mom doesn’t want to see them. Derek will still make several trips to Midland, and I’m glad he can do that. Just ready to be all together again. A friend told me when we first got to Houston that God will “fill in the gaps” where I can’t be for my kids, and that is so true and so comforting. I’ve held on to that phrase throughout this process.

I do plan on uploading a video sometime explaining her planned surgical procedures, but I’ve been waiting until after our consult with Dr. Heinle to make sure that I don’t explain anything incorrectly.

Sunley's Second Emergency Visit Days 1-4

*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.

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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. 

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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.

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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.

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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.

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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.

Ten Pounds and Still Growing

*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.

One of my heart mom besties, Leslie (the one with the other half necklace), took some lifestyle photos for us before the kids left back in August. God knew I needed a photographer friend here in the hospital :) SO SO happy with the photos that perfectly captured our time in Houston. (Photos below by Leslie Laveta Photography)

It’s so hard to believe that we’ve been in Houston for six and a half months now. I started to say that I haven’t been “home” in 6 months, but honestly, by now Houston is home. I have been here just long enough to really miss it when we leave, although I hope the excitement of bringing Sunley to Midland will overshadow the hard parts. Our house will be rented through at least March (and we may just keep it as a rental property and get a new house), so we plan to move into my parents’ empty rental home when we get back to Midland (our furniture and boxes are already stored there). It happens to be next door to their home, and shares a backyard, so I anticipate lots of “running to G and Pa’s house for an Oreo” from the kiddos. No one ever plans on living next door to their parents, but I actually think it will be pretty fun, and an easy transition for the kids :)

We discuss on the daily the possibility of needing to move to be closer to a decent pediatric hospital, but we are far from being able to make that decision with clear minds. Right now the plan is to get back to Midland after the Glenn and get some sort of new normal going before we make anymore life-altering decisions. In Midland we are near family, we love the kids’ school, Derek loves his job, and I can’t even begin to think about leaving our congregation there. All that to say for the people who have asked or have been wondering — Yes, of course we are concerned about the hospital issues, but we are taking that decision slowly and with a lot of input from various nurses and doctors here that are familiar with the Midland hospital. I’m definitely not trying to bash the hospital there (and actually, out of the 3 hospitals in which I’ve had babies, Midland was by far the most comfortable labor and delivery facility), but I think everyone in Midland would agree that they have a lot of work to do when it comes to pediatric emergency care. Really, all we need is a hospital who can get Sunley stable in an emergency to get her transferred to TCH. But I am getting ahead of myself. We have more learning to do before any decisions there.

The best news lately is that Sunley got over her cold without any hospital intervention!! Two more trips to the pediatrician (just to double check some breathing), but she did so good! Aaaaaaaand…we are at TEN POUNDS people! To be exact, 10 pounds and 5.6 ounces. She also got her 4 month vaccines (just a few weeks late due to the cold) and they didn’t seem to bother her one bit…ya know, except for the actual poking part. Derek and I will be getting flu shots this week (HOW is it already time for that), and we are asking everyone who will be around Sunley to make sure you get a flu shot AND a whooping cough(pertussis) vaccination. You can get them at Walgreens, HEB, etc. Pertussis is often spread by older people who haven’t gotten a booster. For all our non-vaxxer friends: We love you, we can still be friends, but please don’t hold Sunley if you and/or your kids haven’t gone the vaccine route. I hate saying that as much as you hate hearing it, TRUST ME. We visit the hospital often for appointments or just to visit our friends who are inpatient, and the last time we were there, a heart kid sneezed several times over a couple minutes, and I thought to myself, “I hope her nurses are on top of that.” Then I immediately thought about how differently now I hear sneezes. That little girl’s sneeze would never have concerned me last year, but knowing how quickly a cold could get out of hand for a heart kid makes it all different now.

In other news, I did end up going up to the hospital to make Sunley’s follow up appointment, and it’s scheduled for next Wednesday, the 26th. Dr. Ayres told us that she expects to put Sunley on the schedule for her Cath and her surgery at this appointment, so we are super anxious/excited/nervous for next week. Sunley will have another echo and X-ray also. She looks perfectly fine, and it’s so hard to believe that she has such a serious heart condition under all of her smiles. I do think that her breathing has been just a tad on the fast side, so we’ll see what her cardiologist thinks. I check her sats once or twice a week now (ever since her ER visit, since they asked me what her sats at home were even though APPARENTLY I didn’t need to be checking them…I digress.) and they have been steady in the 70s, and sometimes low 80s. I’m not sure what to expect at the appointment, and I’m not even sure what I want to happen. A part of me wants to hear that she needs surgery in 2 weeks, and another part of me wants to continue putting it off and putting it off. The sooner she has it, the sooner our family can be back together, but also DUH I’m not looking forward to another and much more invasive open heart surgery. This will be her first time on bypass, and that thought pretty much turns my brain to mush.

I miss my bigs a lot… A LOT. I have spent 4 out of the last 42 days with them and I don’t like those stats. Derek has been able to visit Midland quite a bit and so that’s wonderful. And of course we Duo a whole bunch. It helps that they both seem to be doing really well with the stability and routine with my parents. My sister, Hallie, took on the main caretaker role in Midland for 2 weeks recently while my mom was out of town and I know the kids loved having her there! This weekend, my parents are taking them to OKC to visit the other grandparents and more family up there. So they definitely aren’t short on people loving on them, which makes my heart happy :)

Still, though, I miss them. We will have a lot of snuggles to make up for when we get home!

Yesterday, we got to tour the new Legacy Tower at TCH. The big move for the CVICU and step-down is happening next week so everyone’s excited about that! It’s such a nice facility, and everyone will have a private, sleep-in room. That’s great, but I have to be honest — I will really miss being able to socialize with the nurses and other families. I’m just not one of those people who likes to be alone very often ever, and so much of CVICU is just watching your sedated baby sleep, so I’ll really miss the open concept pods. I also learned so much listening to rounds in the open pods, which was really helpful. BUT I’m obviously so grateful for the option to stay there overnight (this will be especially helpful when she has her Fontan as a toddler) and everyone has really worked so hard to make families feel comfortable, so I can’t complain. I’ll just have to bribe people to talk to me with bagel deliveries in the family lounge ;) I visited some friends who are still inpatient this week, and got to see this wall on 18, where all the nurses have painted personalized hearts on the wall. What a sweet way to leave your mark! <3

Sunley also got to FINALLY meet one of her heart buddies, Emmett, who recently graduated to the step-down floor! He’s a “leftie” (this is my endearing term for HLHSers now), and has had quite the roller coaster, but is doing so great! We’ve so enjoyed getting to know his sweet parents, and I’m happy he’s doing good, but we’ll miss them when he goes home!! We always run into some familiar faces at the hospital, and we love getting to see some of our faves when we’re there.

Sunley still hasn’t gotten to meet her other leftie bestie, Oliver, but that day’s coming. (Oliver is HLHS and they had their first surgeries on the same day) Oliver’s mom took the family photos above. As I’ve mentioned before, we always joke that they “complete each other.” It seems like any time one of them was having an issue, the other was doing the exact opposite (brady, tachy, etc). Well today, Sunley had a mishap with a nail clipper. In fact, we may have to take her to Urgent care tomorrow if it doesn’t heal quickly. Guess who else had the same injury?! Yep, her leftie bestie. Now they are bonded by blood! Sorry, was I not supposed to laugh? My bad.

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Big Kids Labor Day Visit and Sunley's First Cold

*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.

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Thanks to Sunley’s earlier-than-anticipated hospital trip, the Labor Day plans were not disrupted and our big kiddos got to come visit. It was WONDERFUL. It’s easy to fully enjoy being a mom when you only do it for 4 days out of the month, just saying. I can’t wait for us all to be HOME together, but any mom knows that the incessant WORK of being a stay at home mom will still present its challenges after this. I wish it was in reverse right now — I wish I had a 4 day/month break from the bigs instead of a 4 day/month visit. That seems way more reasonable. I’m so happy to report, though, that the bigs are doing so well with the new arrangement. There were no tears at the airport and I was actually really impressed with their good behavior. I think I had expected little monsters with all the big changes happening, but they are both behaving better than they did while they were here. That tells me we made the right call. I think the instability of us back and forth to the hospital was harder than these big absent chunks of time. I won’t see them again until the end of the month, but Derek is going for almost a week next weekend. 

We had such a wonderful time with them. Day one was, of course, SWIMMING and pizza for dinner. Friday was a LONG walk in Hermann park, where we saw performers practicing at the outdoor theater. So that night, we put the 2 littles to bed and I got to take Hadelyn to that show. It was just so fun, and a big adventure for her, complete with sno cones. We also got to ride the Metro Rail and she was THRILLED. All I could think about was germs, so we both showered as soon as we got home. Still trying to find that perfect balance of life and germs, but I think we’re getting there. I also took the kids to McDonalds at the hospital during the MetroRail ride, and we ran into Dr. Heinle! Hadelyn decided to be shy and not speak to him, and he had to think we were crazy for being at the hospital when we didn’t have to, but the kids love it there! I think it’s good to make some fun memories there for the kids, and not just hard ones. TCH makes that pretty easy with a park, a huge toy train installment, and of course floor 16, which has a library and game room. I can’t overstate how glad I am that we are here at TCH.

Saturday morning, we made plans to watch the OU game at a friend’s house. After a couple hours there, Ruger came down with a violent stomach bug and vomited twice there, 4 times on the drive home (an HOUR drive), and twice more when we got home. So that was Saturday. We did our best to quarantine Sunley, but honestly she was totally exposed because of how sudden the bug was. As disappointed as I was, I was so glad that I got to be the one helping him. Few things are sweeter than a sick little boy needing his Momma and Daddy. The bug was over super quickly, but Sunday we stayed home from church in case anyone got sick. We pretty much stayed inside and watched movies together. Monday (a very rainy day), it was pretty obvious that everyone was well, so we went to the Flight museum and just had a ball. Afterwards, we sent the kids home with my dad and Tia (Hallie, my youngest sister). My mom is in Reno with my oldest sister who JUST HAD A BABY!!!! So Hallie is filling in for my mom in Midland (Yes, we have a pretty awesome tribe). I don’t think I realized how rare it is to have this kind of support system until all of “this.” I can’t tell you how many doctors/nurses have been surprised when they hear about all of the family and church support we’ve received. It’s completely unparalleled and we are so grateful.

Monday night, Derek was snuggling Sunley, put her down, leaned over and gave me a kiss, and then went to the bathroom. Five minutes later, it became very apparent that he had Ruger’s stomach bug. That’s how sudden it was! So that was our Tuesday. I just KNEW Sunley and I were next, but it’s now Saturday and we didn’t get it! However…

Sunley is battling her first cold. Wednesday, she suddenly had a 101.8 fever. I emailed Dr. Ayres just to let her know, but wasn’t overly worried. She suggested going in to the pediatrician just in case. Dr. Smith (another fave) checked her out and all seemed ok, but she definitely has a cold. The fever went away quickly within hours, but Sunley is still having some congestion. Her sats are still stable, and though she’s struggling with her feeds they are still under control. We are watching her closely, but she seems to be getting through it. I’m so happy to see her body doing what it needs to do, even with the extra load on her heart and lungs. I’m glad our first practice round with sickness is here in Houston and not back in Midland (no offense, Midland hospital).

I am still trying to schedule Sunley’s follow-up appointment with Dr. Ayres. The heart center moved to Legacy Tower this week, so I ain’t mad about no one returning my 3 calls…but I plan on calling Monday. And if I don’t get an appointment by Tuesday, I’ll just go up there again and wait for someone to schedule it (another perk of living near the hospital). I’m bolder than I once was ;) I’m trying not to have a get-home goal date, but I can’t help hoping to be home before Christmas…and maybe make the last night of the New Years Meeting. But I know we’re at the mercy of the surgery schedule, and of course at the mercy of Sunley’s post-surgery healing time.