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.

Sunley's First Emergency Visit Day Five and Follow Up

*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.

I wrote this post early this morning, but forgot to post before we left for Sunley’s appointments. Updates from the appointment are at the end :)

After 5 days and 5 nights, we were able to be discharged last Saturday morning, and we’ve been home since with a baby who FINISHES her bottles! The morning of discharge, we had a new cardiologist working our floor, Dr. Mott — Yet another fabulous doctor that we really enjoyed having. He immediately recommended Sunley be put BACK on Enalipril. This was super frustrating, after all the back and forth discussing her meds with Dr. Schlingmann, and I told Dr. Mott that I didn’t know whose opinion to go with since Sunley’s plan of care seems to just depend on which cardiologist is on duty that week. He was very sympathetic to our concerns, and after much discussion, we decided to put Sunley back on Enalipril. That drug is usually to help with blood pressure issues (which Sunley doesn’t have), but for her it is used to help her single ventricle (the left one) fully relax in between pushes. She is expected to need Enalipril for her whole life.

Later today, we have a checkup with Dr. Ayres. I plan on having a discussion with her about our frustrations with Sunley’s med switching. I don’t want her on anything if she doesn’t need it, and I need to understand why there seem to be different opinions. I think maybe that it just wasn’t clear to the cardiologist WHY Dr. Ayres had her on Enalipril, but also, it shouldn’t be up to me to explain it— that kind of stuff should be in Sunley’s records. 

I also plan on asking about starting Sunley on some solids. Most people wait until 6 months old to introduce solids, but when Hadelyn was about this age, I started her on an avocado/breast milk mixture and she loved it. I’m hoping we can do that with Sunley and get her some good fats in there. Also, since I know everyone loves hearing about my breastmilk, it has started to become more fatty! Yay!! I’m sure you all wanted to know that. It hasn’t been tested or anything, but it’s visibly got more fat, and that should mean that it has more calories so that’s great. I won’t ask yet if we can stop the formula fortification, but I’m hoping we’ll get there soon. I doubt that we will ever get to breastfeed again, and I’m so thankful that we had a couple weeks of that in the beginning. 

Oh, and before I forget: Sunley rolls BOTH ways now —back to tummy has been happening for a while, but now she can do tummy to back also! Momma is proud. She reaches and pulls things to her mouth, giggles, smiles — She’s hitting all the milestones you’d expect from a heart healthy 4 month old.

Our big kids get here tonight!! They’ll stay through Monday, and we can’t wait to see them! This is the longest they’ve ever been away. Derek was able to see them a couple times since they left, but I haven’t seen them in 3 weeks. That’s a lot. Thankful for Duo, and thankful that we have so many people willing to help! I’ll try and get an update on here tomorrow with the results from Sunley’s appointment today. Hoping for good news all around.

UPDATE:

Sunley’s appointment went very well. I got all of my questions answered, all the Enalipril why’s, etc. Dr. Ayres explained to me (again! Thank goodness for her patience haha) that in her experience, Enalipril seems to help many single ventricle patients long term, even though there may not be anything clinically showing up right now that deems it necessary. Because Sunley’s heat has to overcompensate with the added workload of having only one ventricle, the Enalipril helps that ventricle with it’s function, and helps avoid enlargement of the heart. Sunley’s heart today was very slightly enlarged since the last appointment, but nothing too concerning. Dr. Ayres agrees that we can stay off of the diuretics, and we can start some avocado feeds! She also suggested that we continue to work on Sunley’s trunk control. She is right on track for a 4 month old, but Dr. Ayres said that sometimes being able to sit upright after surgery helps with the infamous Glenn headaches. Have I mentioned those here before? Ya. Not fun, and not just any headache — Visibly swollen head, feeling like your hanging upside-down, 24 hour a day headaches. Hoping they are short-lived, or better yet NONEXISTENT for our Sunleyshine.

We will have a follow up appointment in 4-6 weeks, and the cardiolgist expects for us to schedule Sunley’s Cath and surgery at the next appointment. So we are getting closer! Mixed feelings there. Dr. Ayres also mentioned that the surgeon, Dr. Heinle, may consider doing a different kind of Glenn procedure than we thought we were getting— as in, he may choose to NOT close off the pulmonary artery. We will see, jury’s still out with that. 

Last but not least, our big kids arrived safely today!! So far we’ve been swimming and had a pizza picnic in the living room. Very much looking forward to some quality time these next few days!!

Sunley's First Emergency Visit Day Four

*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.

Wonderful news: Sunley is scheduled to be discharged first thing in the morning! She has gained 240g since we have been here — that’s half a pound! The first few ounces were I’m sure just a result of getting off of her diuretics, but now we’ve definitely had some real, healthy weight gain. She’s finishing almost all of her bottles, and just obviously feeling better.

I’m so happy that we had Dr. Schlingmann — he’s quickly become one of our favorites that we’ve had at TCH. He was very patient with our very repetitive questions, and never made us feel dumb for asking or questioning anything. I’m SO excited that he seems to have been spot on about her meds, and I had him really go into detail on WHY she can be off of the diuretics. I did not end up asking for an xray, and I feel like I know what to look for at home, should she start needing more attention. I know what tachypnea looks like, and I think I have a pretty good idea of when she’s feeling good and when she’s not. 

I specifically requested today that he talk to Dr. Ayres just to make sure we are all on the same page. Sunley has a follow up with Dr. Ayres scheduled for August 30th, and I don’t want her lack of Enalipril, Diuril, and Lasix to be a surprise. I’m also hoping that they can get on the same page to REALLY figure out if being off of Enalipril looks like a long-term thing. For now, I’m just so excited to be going home with only ONE med, which is just a reflux med. For months, we’ve been dealing with the constant med reminders and the stress of always making sure we had them handy if we were out somewhere, and now I get to just remember 1 med, twice a day. In my opinion, Sunley seems to feel better overall without all the meds. I don’t know if those meds could affect this, but she’s been way less constipated since we got here, and it’s so wonderful to see her WANTING her bottle.

I think I’m officially convinced that she doesn’t need the diuretics (finally). It’s just been really hard to let myself get my hopes up. Her normal saturations are now in the 80s, and I didn’t think that was possible! As she grows, we will probably need to tweak at some point, just like we needed to tweak now, but I’m hopeful that the higher sats might mean some more wait time before the Glenn? Not sure if it really works that way (Rats, that would have been a good question during rounds) but I’m hopeful. 

I’m very happy with how smoothly this hospital trip went. I just feel like the staff identified and fixed the issue so quickly. I REALLY thought we were going to spend some time after getting her rehydrated figuring out meds, and I’m happy that I seem to be wrong. A TINY part of me is still nervous that we won’t have much med-free time before we get back on some, but I plan on enjoying this as much as I can before that happens. I’m beyond stoked about the 80s saturations! This was our goal post-surgery and we have finally hit it. I plan on doing my best not to worry about the “next thing” and just enjoy my chubby baby for now.

On a less spunky note, I am really missing my big kids today. Glad to know that they are happy and having fun, just miss them. I found this photo of Hadelyn today and it just made me a PUDDLE.