Six Day discharge and Thanksgiving

*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. Actually, the “right ventricle” is really just a small strip of tissue, so there is debate about classifying her as Double Outlet Left Ventricle as well, which is incredibly rare. 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 the plan is to do a total of 3 heart surgeries (PA Band, Glenn/DKS, and Fontan). 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 (PA Banding) 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 for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). On November 6th, Sunley had her second open heart surgery, which required bypass: a Bi-Directional Glenn and DKS procedure, and incredibly went home only six days after that. She is currently 16 days post-op from that very invasive surgery.

SIX days post-op and we were discharged. Amazing. Saturday, November 10th, we were able to move to floor 22, and after tweaking her meds just a bit, we got to go home on Monday, November 12th. She was sent home on Aspirin, Enalapril, Lasix, Hycet, and Tylenol. She hasn’t had a headache in 2 days now, so she is only occasionally getting Tylenol now, and hasn’t had Hycet in several days. It has been ROUGH having a baby so fresh from surgery home, but of course we are glad that she’s done so well. It’s been rough because she is incredibly grumpy, clingy, and eating like a HORSE (which is fantastic to see after 6 months of feeding struggles). Pre-surgery, Sunley ate about 750 mL’s per day, and now she eats about 1100 plus three avocado feedings. She is quite obviously putting on weight, but of course I have been conditioned to worry about fluid retention when I see weight gain, so it’s hard to let myself get too excited about that. The Glenn headaches are so hard to watch —she would just cry and grab her head with both hands. But I think we may be done with those, finally! Each day has gotten slightly easier, but she’s been waking up multiple times a night, and just never wants to be put down. Let me be clear: Sunley NEVER wants to be put down. If her butt touches the bed, she cries. If you get up and walk away to the trashcan to throw out a diaper, she cries. It’s been unbelievably exhausting, but each day gets about 2% better…so by that estimate, in approximately 50 days, I think we’ll be back to normal.

We really don’t have the heart (no pun intended) to let her cry it out at all, but maybe in a few weeks when we feel more confident that her DKS and everything has healed more completely we can try some gentle sleep training. To put into perspective how ridiculous her 6-day discharge was, I drew a before and after of her heart pre-surgery compared to after the Glenn and DKS.I’m assuming this is accurate, but a heart surgeon could probably see some flaws!

It’s hard to believe how quickly she progressed. Below are some photos from the evening after her surgery, and the days following. I know that to a lot of people this may be hard to see, but we couldn’t believe how GOOD she looked! I was so glad she was able to be closed, and we couldn’t believe how pink she looked. Since being extubated, she’s actually become slightly more cyanotic, but I’m looking forward to post-Fontan pinkness someday! One of the sweet nurses already had her name drawn on the board when we got there. Little things like that go a long way for parents! Also, do you remember how last time we were inpatient, I had to take down all my decorations, and I was super sad about it? Well, I heard a lot of reasons, as far as that paper and tape were a bacteria hazard, so I bought page protectors and suction cups, and voila! Interesting fact: I asked the nurses about it this time, and no one knew what in the world I was talking about. Sounds like just some normal growing pains with moving to a new tower — not everyone is on the same page with new/old rules. Moral of the story is, I got to decorate :)

While we are so happy with Sunley’s progress, we did have some bad news the day of discharge. Her last echo showed a weakened squeeze from the front portion of her only ventricle, and she had some mild pulmonary valve regurgitation. Neither of these things were issues that should keep her in the hospital, but it’s something to watch in future checkups (Next checkup is November 28th). Because of this, her sats are lower than we’d like (again, in the low 80s this time). No one can tell us what will happen in the coming years, but of course I’m concerned about that weak squeeze, concerned that the tissue below her aorta will continue to build up and cause problems, etc. It’s frustrating to look at her and know that at best, she will always only be well enough to not be in the hospital; she will never be WELL. The best phrase I’ll ever get to use concerning her health will be “She’s doing well for right now.” But who knows? Maybe we’ll get to be in that space for decades before encountering any major issues :)

On a brighter note, we are feeling like we’re SO close to going HOME to Midland!! Home by Christmas feels like a solid possibility, and we can’t wait to have our family back together. We were planning on trying to get our big kids here for Thanksgiving, but they have both been sick, and we just can’t risk Sunley catching anything at all right now. It breaks my heart, but we are going to have a second Thanksgiving in January, and I think we might make that a permanent tradition. There really aren’t words for how much I achingly miss my kids, but it is what it is, and it’s almost over, Lord willing. The coming 2019 will be the rebuilding year for the Nichols clan, and I can’t wait to get back to being my kids’ parent. Someone will probably need to remind me of this when I start to potty train Ruger.

While I’m completely OVER being away from home and away from my kids, a part of me is absolutely dreading returning to our everyday life. Everything has been completely paused for us, and I’m not really sure anymore how to not be in and out of the hospital, or how to interact with people outside of the hospital. Mostly, I am just really going to miss the friends we’ve made here. God didn’t answer our prayer of complete healing for Sunley, but He did send us into the arms of some pretty incredible heart parents who have uber-quickly become lifelong friends, as well as a couple doctors and nurses who made this whole thing bearable. Those friendships have made five separate hospital stays FUN. WHO says that?! Of course, no one wants to see their children in the hospital, but we are so blessed to have some actually really great memories accompany the hard ones.

I’m also really grateful for how much this journey has forced my brain to slow WAY down. I miss traveling and shooting weddings a whole lot, but I’ve been able to spend time with other creative outlets that I hadn’t before, and it’s all just for me, with no deadlines. I’ve written a ton of poetry and lullabies that’s just for me and my kids, I’ve been doing some watercolor just for fun, and of course I’m still editing photos (just not getting paid for them, ha). It’s been kind of fun to just let myself be a mom and an artist and not have to find a working balance between the two. I’ve been singing Sunley a short little song I wrote the day of her surgery, when we found out that the DKS was a real possibility. I was super worried about her ability to recover from such an invasive procedure, especially considering her issues with a previously weak squeeze, and even though it probably sounds morbid to a lot of people, this little song made me feel a lot better, and still does. Also, if you feel like this is dark, then just consider the lyrics to Rock a Bye Baby, and it makes this song sound like Happy Birthday ;)

If you take her, take her peaceful

Do not let her mind be fear

All I want is to see her smiling

All I want’s her to know You’re near

If you take her, take her laughing

By the ocean, bright and sunny

Feeling sand and watching sailboats

With her sister and brother running

If you take her, then take me also

For I don’t like this world alone

But if I stay while she leaves smiling

Then give me grit while we wait for Home

I am very sad to not have my bigs here today for Thanksgiving. Of course, we got about 5 different invitations to spend today with other families because we are surrounded by the sweetest people. But we just decided to spend the day with our small little unit, make chili dogs, and thank the Lord that we got to keep this little drop of sunshine in our lives <3

Bi-Directional Glenn and DKS Post Op

*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 the plan is to do a total of 3 heart surgeries (PA Band, Glenn/DKS, and Fontan). 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 (PA Banding) 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 for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). On November 6th, Sunley had her second open heart surgery: a Bi-Directional Glenn and DKS procedure. We are still inpatient and recovering from that.

First of all, PRAISE THE LORD. I am constantly just humbled and have been literally brought to my knees thinking of all the prayers said on the behalf of our little family. I won’t try and thank all of the individuals that have been there for us all year long, but I do have to say thank you a million times to my parents and to my aunt, who is keeping our older two kiddos while we deal with all of this. My aunt is filling in for my parents so they can be here with us, along with Lonnie and Tonya, who came for Sunley’s surgery. The love that believers have for each other and for my sweet baby has been so uplifting and unifying, and I am so in awe of how much love we have received through encouragement and prayer. God is constantly blessing us not only with good physical outcomes for Sunley, but with new encouraging relationships all across the world.

Whew. It’s been quite a whirlwind over here! I’m not really sure how to get all the info in here, so I’ll just give a summary of each day:

Monday, November 5th

We arrived to TCH at 8am to start the very lengthy check-in process. Sunley had to be cleared by several doctors to make sure she didn’t have a runny nose, fever, ear infection, etc. It’s been a long month getting ready for surgery, keeping her almost completely quarantined so she didn’t catch anything that would bump her surgery date. This also means that the kids couldn’t come visit, and that was the hardest part. I finally just HAD to see them, and went to Midland for a quick weekend trip at the end of October. They haven’t been to Houston (haven’t seen Sunley) since September 3rd (Labor Day weekend). We finally got a room on one of the step-up floors, room 2309, and stayed there overnight. We must have had a brand new nurse (since Sunley was obviously the easiest case on the floor), because I had to show her how to do just about everything, including put on a posie over Sunley’s pulse ox. It was no biggie since Sunley really didn’t need any nursing care, but I am hoping we get a more veteran nurse next time we’re there post op. Sunley got A LOT of snuggles from all of us (both sets of grandparents are in town for surgery). Getting ready for an early day tomorrow — Surgery is set for 7:15 am. She will go NPO after 3am, which really isn’t too bad. I requested that we stop fortifying her breastmilk bottles to see if we can gain weight post Glenn without the help of formula. Not sure how well we will sleep tonight, but I’m ready to get this over with!

Tuesday, November 6th

Grandparents came in early for one last snuggle, and we’ve been rocking her ever since. Surgery got delayed just an hour, but that’s kind of a long hour when you have a hungry baby. 

When we got back to the holding area, Sunley’s whole team was ready for her, including Dr. Ayres (her cardiologist) who made sure she got put on Sunley’s surgery today, even though she had 3 patients going in. She has made us feel SO confident the whole time we’ve been here. Sunley got some last snuggles and kissies, and we gave her a light sedative to help her zone out, since she’s been starting to feel some stranger danger lately. Watching her drift off made me more relaxed, too.  

We LOVE our anesthesia team! Sunley had the same anesthesiologists that she had for her PA band surgery, so it was great to see them again. (Heart kids have anesthesiologists that are specific to cardiac care. Primal Trivedi and Eugene took her back, and Eugene picked her up and put her on his shoulder and said “I’ll take of your baby” as he walked away. He’s everyone’s favorite anesthesia fellow because he’s always so kind and gentle with the babies. 8am: Sunley went back to the OR, and they said to expect an update in about an hour/hour and a half.

Unfortunately, it sounds like Dr Heinle will most likely be doing the most invasive option, the DKS procedure, along with the bidirectional Glenn, but the final decision won't be made until he gets in there to inspect the aorta and pulmonary arteries, and their valves. I'm so grateful for the team of doctors that we have, and I know that they will make the right decision. Surgery will last between 6 and 15 hours. We were previously hoping to get through the Glenn without stopping her heart, but that is no longer an option, as her atrial septum needs additional opening.

10:30 am: Our first update from Deanna - They've started the incision. She has her lines placed and is doing well. The TEE took a while because there is A LOT of debate on which option is the best option for Sunley long-term. Still leaning toward a DKS but Dr Heinle hasn't officially decided yet. Dr. Ayres and Heinle discussed both options for a really long time, but ultimately it’s just a (very) educated guess as to what will be better for her in the long run (which is why it MATTERS to which hospital you take your kids!). 

Update #2 at 1pm: Officially on bypass.
Update #3 at 2ishpm:
Her heart has been stopped for a while now. They are officially doing the DKS. We are pretty bummed out that she needed that option, but we are grateful that they saw whatever they needed to make that decision, hopefully avoiding extra surgeries in the future. (She will, of course, still have a Fontan down the road). Her heart will be stopped longer than we wanted, but as soon as the DKS is completed they will restart the heart (she will still be on bypass though) and proceed with the Glenn.

Update #4 at 3 pm:

The DKS is completed (that was fast!) and Dr Heinle is beginning the bidirectional Glenn. The heart is still stopped but will be started again after the atrial septostomy is completed (I think).

Update #5 at 4pm: 

Once again, they underpromised and over delivered on the time estimate: Sunley is DONE with her surgery! Her heart is beating, she is off of bypass, and her function looks great. They WILL get to close her chest! They are just about to close. Praise God!!! Now we are very anxiously awaiting the next few days of recovery to see how her heart does with this crazy new physiology.

Last update at 5.15:

She is closed and headed to her room. We should see her within an hour. Of course she is intubated, and hopefully we can extubate soon.

Overall, the surgery time from going under to being closed up was around 8-9 hours. Dr. Heinle came to talk to us after it was done, and when I asked him how long she was on bypass he didn’t even have to think about it and said “She was on bypass for 161 minutes, and had her heart was stopped for 57 minutes.” I also asked him if there were any unexpected issues during surgery, or any delay in getting her heart started again, and he said no. I’ve learned that you have to ask these things, as that information is not always offered —although I think Dr Heinle goes into more depth…or maybe I just ask too many questions ;) We are all extremely happy with the outcome, but with such an INVASIVE procedure, we are expecting a slower recovery than originally thought.

During surgery, our parents sat with us, and we hung out quite a bit with Leslie and Brian (Oliver’s parents). We sat with them during Oliver’s surgery and played board games, so it was great to get to do that all again. We also met another sweet couple who has an adorable little girl HLHS interstage. The friendships we’ve made here have been such incredible blessings!

6.30pm: Mommy starts asking to see Sunley, since there is a history of nurses/doctors forgetting that we are waiting anxiously outside the rooms. Within five minutes of asking, we got to go back to see our girl. We were happy that the surgeons were able to close her chest. She is of course intubated, but all of her vitals look good. I’m shocked that the doctors are discussing possibly extubating her tonight. I’m wondering if that’s a little soon, so we discuss it, and get to a good decision of being open to it, but not pushing the extubation. Derek and I are sleeping in the Ronald McDonald rooms tonight in the hospital to get away from the monitors and busyness of the CVICU. Sunley is in room 1803. (We were hoping to get next door to Oliver on a different floor, but oh well!)

I had a list that kept track of ALL her meds aaaaaand I accidentally deleted it. SO bummed about that. I remember that she came out with one chest tube (glad it was only one, as we were expecting two), an IJ line (Glenn line through her neck to check her new glenn pressures), two femoral art lines, one wrist art line, an IV in her arm, foley Cath, and temp probe. She was on Milrinone, Precedex, Nitrocardipine, Enalapril, Nitroprusside, Nitroglycerine, of course TPN and lipids. There may have been other drugs but I can’t remember them all. I may go in her chart sometime and look art them all.  

She still looks pretty swollen in her head, and I’m sure will have some Glenn headaches as her body gets used to this drastically different physiology. But for now, she is sleeping hard and stable. We don’t care about the election.

November 7th

Sunley had a great day today! She was extubated in the morning to high flow 8L at 100%, and is down now to 75%. She SAT up like a FREAKING SOLDIER less than 24 hours after her heart was stopped and chest open on a table. Everyone is AMAZED by her progress, and a couple of doctors have said that they’ve never seen a DKS/BD Glenn do this well so soon after surgery. I’m excited, but I kind of have that pessimistic feeling like I’m waiting for something to go wrong. Sorry. Can’t help it. Her Glenn pressures had a couple spikes, but none of us think they were accurate reads, and the numbers have been stable otherwise. She also got one of the fem art lines out, and did an oral feed of 30mL! She’s pretty amazing, and the prayers are definitely working! We had one of our favorite nurses today, Marty, and we are so grateful for such a great day!

November 8th

Sunley stayed stable through the night. Glenn pressures are perfect, so we took out the IJ (the one in her neck). She has more pain today and won’t let herself cough, so she has some gunk building up that may need deep suction later. We ended up giving Sunley some Dilaudid and Hycet today to help her with the pain. This afternoon her blood pressures started going up higher and higher and higher. They got up to about 149/67. The whole time they were climbing, I could tell our nurse was getting nervous, and our attending was busy with an emergency so no one was coming. Also, the BP was NOT due to pain —Sunley was sleeping comfortably, and we tried every limb, a new blood pressure cord, etc. It was a REAL high BP. Momma bear was starting to come out and I finally told our nurse I would wait ten more minutes, then I’m going to find someone (I mean, how many doctors are in this building right?!) I was staying pretty calm until our attending finally came in (understandably flustered from the emergency next door) and called her a “he” (also understandable, there’s lots of babies here), and then started telling me that this is “totally normal, especially because his [HER] heart had a big change since the NORWOOD.” And Sunley didn’t have a Norwood. I got pretty upset because I felt like not only was he not concerned enough, but he clearly wasn’t even thinking about her physiology. He gave her a dose of Hydrolozine to bring her BP down and told me that everything is fine, and her BP will be back to normal range within ten minutes. FORTY minutes later, Sunley was still having super high blood pressure, like 130s systolic, and I was FRUSTRATED. The doctor ordered more Hydrolozine but never came back by…pretty sure he didn’t want to admit he was wrong. I really would have been calm had he taken me seriously, but I think the more he tried to downplay it, the more worked up I became —and the more worked up I was, the more he tried to downplay it. It was not a fun afternoon. We stayed in her room, until her blood pressure got to about 112 systolic consistently (Ideal is under 100). So it is still high, but we feel good about going to bed since she’s not in the danger zone anymore.

I found out later that high blood pressure is actually even more dangerous than I thought for a DKS-er. Such a fresh DKS can leak if the BP gets too high. Really not happy with how the attending handled it, but the important thing is that we are moving in the right direction now.

November 9th

I woke up knowing that the doctors were going to totally downplay her high BP from yesterday, in hopes of moving us to the step-up floor. Derek ran into one of our favorite doctors when he was getting coffee, and mentioned the high BP and they told him that No, that’s definitely NOT normal and not ok. We had a great nurse yesterday and today, and she’s helped me feel totally validated with my concerns. 

Sunley had to be NPO again last night so she could have her pacing wires removed today so she was grumpy when I got here, and of course the doctors ran late getting here to pull the wires, so that was pretty miserable. When they got here, I got to have a good talk with them about the BP concerns (BP was still in the 110s/120s) and again felt very validated in not wanting to move to step up yet.

At rounds, just like I predicted the doctors from yesterday totally downplayed to the team the whole BP thing. They said “Maybe her new normal is just in the 110s” which brings me to this tangent:

When a baby is not hitting the health standard the doctors have set for them, let’s try something to get them to that standard instead of LOWERING THE STANDARD. Tangent over.

At the end of rounds, one of the doctors said that we could move to step up, and I very calmly (not calm in my brain) said that I would feel more comfortable with 24 hours of good BP before moving. The attending basically said that they might need our bed for more critical patients, which brings me to another tangent:

Please do not try to guilt me out of a hospital room for my baby, because I am all too painfully aware of other “more critical” babies, and that’s a horrible reality that will never change. I’ve been guilted out of a room before (remember our wasted hospital week on the Neuro floor?) and it was a HUGE mistake! I really think that’s a cheap shot to just get me to agree with you. And if the brand new tower needs more rooms, lets have fundraisers and get that done, but I’m not moving my kid when my ALWAYS right mom gut says no. Tangent over.

We decided to table the discussion to later in the day. But as the day progressed, Sunley had some still-too-high BP, minor desats, her skin was mottled, hands blue and cold, and she had small spikes in her heart rate (nothing crazy, but still enough to raise concern). Overall, her body told us all day long that we were moving too fast and she needed to slow down. So that’s what we did. Before we left tonight, she was having abnormally low ST stuff (that’s the technical term) so they did an EKG which came back normal. OH! She also FINALLY pooped and it was a DOOZY. We had to do a dressing change on her art line afterwards, and change all the bedding. So happy for her though, haha!

Today, November 10th

Sunley’s BP finally stayed under 100 systolic all night long. Her heart rate is fine and she was all smiles when we came in this morning which was SO wonderful to see! She is playing with all her old toys and doing all the Sunley things, so it’s obvious that her brain function has remained 100% since having so much bypass/heart stopped. She did struggle with her last 2 feeds, so I’m anxious to see her BUN numbers, because I feel like she might be a little dehydrated. She is still getting some lasix and is her input/output is still negative even though she is all PO (besides occasional Delaudid). If she is dehydrated, I think we can easily get back on track with some IV fluids.

Her coloring is much better, except when she gets super fussy. I THINK the coloring yesterday and for a short time today is from the dreaded Glenn headaches. It seems like her entire body tenses up, which just makes it worse. Hoping those don’t last too long!

We are still waiting on the team to round on us, but I really think they will move us to step-up as soon as a room is available, and I think she is ready now. We just needed to listen to her body telling us to slow down, and that’s exactly what she needed. She will need to get her double lumen fem art line out, and get an IV put in her arm (her first one went bad quickly) so I’m bummed she’ll get at least one more poke. But getting that line out will be good, since it’s very high risk for infection.

Photo of a Glenn headache:

Waiting on the Glenn

*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 for 5 days, and underwent what I’ve officially termed a “doing-something cath” (atrial septostomy). Right now, we are waiting on her Glenn, which is scheduled for November 6th (that date is not set in stone).

It’s been an uneventful couple of weeks, and I love the word “uneventful.” We check Sunley’s saturations daily now, and they are consistently in the 80s. Praise God! I’m so happy to see those numbers. I’m really hoping we will continue with high 80s saturations after the Glenn. I’ve been wanting to post a video explaining in detail what we’ll be doing in her surgery, but have been waiting on our consultation, which has finally been scheduled for this Thursday. So, I’ll post a video soon!

We were told after our last ER visit to really try and make sure Sunley isn’t exposed to too many germs between now and her surgery (scheduled for November 6th), because even a runny nose could postpone her surgery. I call this “newborn restrictions,” so we aren’t letting anyone hold her, I’m not taking her out much at all except for church, and we decided not to have our big kids come visit (since they both have congestion right now). That was a really difficult decision, and I’m getting really sick of not parenting my kids. Don’t get me wrong, the clean house and napping opportunities are fantastic! It’s getting to the point now though where I can barely get through the day without crying, and I just really need to see them. I went back and forth on whether or not to go to Midland — I’m worried that seeing me will just upset them — but ultimately, I’ve decided to fly in on Friday and leave Sunday, and I CAN’T WAIT!! Sunley will stay here with Derek and a freezer full of breastmilk. I’m really hoping for no more unexpected ER trips, especially while I’m gone. Another concern is, of course, the germs from the airport, so I plan on being the germaphobe on the plane, complete with Clorox wipes.

It was really hard to decide to go to Midland, because I really REALLY don’t want to be there without Sunley. I am desperate to see my kids, but I thought the first time I’d be back would be with my whole family, and doing it by myself and without Sunley is just not what I had pictured. I have missed our church family in Midland SO much, and I can’t wait to see everyone and worship together — but be warned, I’ll be an EMOTIONAL WRECK without my 2 missing pieces! Overall, I just don’t really feel ready to be back in Midland, but this trip isn’t really about Midland; it’s about hugging my bigs. I don’t want to see any part of my “before” life, and I really REALLY don’t want to see my house. I am incredibly homesick for our house. I haven’t lived in it since February 14th of this year, and probably never will again, and I think I really resent the fact that we had to leave when I had just finished drawing the plans for our add-on. I was so looking forward to building the spaces in which my kids would grow up. I was so ready to settle in and plant roots, and we had to just completely let go of that dream so suddenly. I am incredibly grateful that we were able to rent it out, and that money has been such a huge blessing. Still, I miss my funky house, and my lime green front door. For a while here, every once in a while I would grab a shirt to wear and would notice that it still had my house smell (all my prematernity clothes had been stashed in bags for a while), but I’m finally out of those clothes. It’s weird the things that your mind remembers. For some reason, the thing I picture the most is the way my front door handle felt opening my door — How weird is that? My big 2 kids happened to take their first steps in the exact same spot in the living room and I picture that a lot. And I have a vivid memory of painting Hadelyn’s bedroom with my mom when we first moved in. And looots of memories of putting my kiddos to bed — I think about that every night (probably because who DOESN’T love the kids GOING TO BED).

We own a couple rental properties in Oklahoma, and it’s funny to me that right now we have 3 houses and one apartment, but no home. When we get back to Midland, the plan is to live in my parents’ empty rental property while we look for a new home and a fresh start. We finally decided to just keep our house as a rental property instead of adding on to it. I completely agree that this is the right thing for us to do, but I think I’ll always be a little sad about having to leave our first house the way that we did. I’m completely aware this is a classic “first world problem,” but that doesn’t make the homesickness go away. I’m choosing to just focus on loving on my babies instead of being sad or overwhelmed with all the feelings…Maybe if I ignore them they’ll just go away? The feelings, not the babies. Ignoring babies just makes them more tyrranical. I’m usually more upbeat about this whole thing, but I think a family can only take this kind of separation for so long, and I’m about done with the whole thing.

I’m actually not feeling too worried about leaving Sunley, even though I’ve never been more than 10 minutes away from her. I’m worried that her heart will decide on another ER trip while I’m gone, (PLEASE NO) but I can grab a flight and get here relatively quickly if that happens (although I’d be a wreck if it does). Derek can definitely handle her for a few days, and the freezer is stockpiled with milk. I even have some bottles from Oliver’s stash, thanks to his generous mommy — Gotta love milk-sharing! 

On a happy note, we took Sunley to the beach for the first time!! It’s just 40 minutes from our apartment and we went on the most perfect, sunny day :) We are being super germ-conscious right now, so we only stayed for a little bit and didn’t put her in the water, but it was so wonderful and MUCH needed for me. I’ve always said that I think God threw in a little bit of sand and salt water when he created the recipe for my soul, because the beach (ANY beach) is where I feel the most peaceful.

I forgot to mention that we have Sunley down to just ONE medication now! We took her off of Zantac (for reflux) so now she only takes Enalapril twice a day (not for blood pressure) to help her ventricle fully relax in between squeezes. We LOVE only having to remember one med, and she is so good at taking it. In fact, she is the most well-tempered baby! Sunley is all smiles all the time, and rarely cries without good reason. She is SO close to crawling, too! Her 6 month developmental evaluation is coming up on the 25th, but I can already tell you that she’s got no delays (mom-brag), which is such a relief! I really think that’s a result of those first 6 weeks prior to her PA Banding surgery. If you’ll remember, she was supposed to have surgery at 1 week old, and instead got to come home and be a normal baby after just a week in NICU4, and stayed home for 5 weeks! I really think it laid a good foundation, even with 6 weeks of sternal precautions afterwards. Sunley has been in the hospital 4 times, but in between all of those visits has had a very “normal” at-home baby life. She’s also been the center of attention with the bigs gone so much (pros/cons).

Our leftie bestie is set to have surgery this coming week, so be keeping him and his family in your prayers! We’re all hoping the Glenn will give both of these kids better and hardier physiologies to handle baby/toddler life (and its many germs). In our case, we are mainly hoping for stable function and high sats to help Sunley Summit get some good (preferably several) years in before the Fontan.

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.

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.

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.

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.

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.

Sunley's First Emergency Visit Day Three

*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.

My new favorite thing is watching Sunley figure out what these bad boys are for:

Sunley has had a really good 24 hours. She is eating at least 80% of her bottles orally, and sometimes finishing them completely, so we decided this morning to take out her feeding tube! I’m hoping this will help with her reflux pain. Her weight today is 4.240 kg (9 lbs 5 oz). The doctors expect us to go back home in the next 2 days if she continues to eat and gain well. And right now, the plan is to go home on only Zantac, and not resume the Enalipril or the diuretics. I specifically asked today if Dr. Ayres has been consulted, and my answer was “the primary cardiologists always know what’s going on.” Not sure that was a real answer, so we will see what she thinks about this no-med business next time we see her. I haven’t decided if I will insist upon an X-ray before we leave or not. Dr. Schlingmann clearly knows what he’s doing, and he told me today that there is no reason for an X-ray when Sunley clinically looks ok. It’s very difficult to know when to insist on things and when to let it go. If I can’t shake the gut feeling, I will insist on an X-ray, or at least follow up soon afterwards outpatient. Even if Dr. Schlingmann is wrong (which I doubt), we could tweak meds as outpatient. Either way, things right now are going good. Her sats are often in the low to mid 80s. This is great, but I do wonder if that’s due to retaining fluid?? Everything with heart babies is just a series of educated guesses. 

I’m glad that right now, there doesn’t seem to be been some big underlying issue, and I’m especially glad that her sats quickly came out of the 60s. Apparently, there was more talk about keeping her here until her Glenn than I realized. I’m glad that isn’t the plan, at least not right now. The Glenn seems so far away and so overwhelming, but I know when it gets here we will be ready. Everything so far has seemed impossible until it happens, then it just IS, and we deal with it.

I got to have lunch today with 4 other heart mamas who are all inpatient here with me. We had such a wonderful time catching up, and I’m shocked that we all were free at the same time! I will really miss this part of our hospital days. There is nothing like the bonds we have made with each other <3 While I was at lunch, Sunley and Daddy went to a Luau on our floor :)

And below the photos is another video of Sunley and her hands because AAAAAW