Sunley at 3 Weeks Old

Last Tuesday was two weeks that we have had Sunley HOME. Two weeks that we were never supposed to have! Two weeks of a very normal newborn period – Feedings, diapers, playing with big brother and big sister, and lots and lots of pictures. Thank you Lord! She is now just over 3 weeks old.

Last Thursday, Sunley had a follow-up with her pediatrician, and Dr. Smith expressed some concerns about her weight gain, liver enlargement, and what seemed to be “hard breathing.” She told us that it was definitely time to see the cardiologist, and wouldn’t have been surprised if Sunley was admitted. It totally burst our bubble, and was a sharp reminder that even though she appears so healthy, her little heart is just not equipped to do what it needs to do. Dr. Smith had me up her feedings back to every 2-3 hours, which is not fun after getting used to a 3-4 hour schedule.

The next day (Friday), we had an appointment with her cardiologist, Dr. Ayres, who hasn’t seen Sunley since she was in the womb. It was SO great to see Dr. Ayres again, and she was so happy with how Sunley is doing. She said she was expecting to see a very different-looking baby, and was very happy with Sunley’s pink skin, respiratory rate, and wasn’t too concerned with her weight. Sunley’s heart is enlarged, and her body is experiencing some increased blood flow, so she’s now on a very small dosage of a diuretic. That should help with extra fluid and with liver/heart enlargement, but will unfortunately also cause some weight loss.

This past Tuesday we had a follow up appointment with the pediatrician, and even though I’m feeding Sunley as much as humanly possible, she had lost 2 ounces since last time, which puts her back at her birth weight (7 lbs 1 oz). The pediatrician talked with the cardiologist and decided to start putting some formula in bottles of breastmilk to try and up her calorie intake. Sunley’s little body is just working so hard that she’s burning more calories than I can make for her. Plus, girl’s got some skinny genes running in her family – Derek and I were hardly even on the growth chart growing up. 

All of those issues are signs of congestive heart failure, but she’s not quite ready for surgery yet. A PA banding surgery is extremely difficult in that it’s not easy to see how tightly to band the PA. We have to wait until the PA has lost its pressure, otherwise the surgeons won’t be able to get it right and the whole thing would be pointless. Even if we go in at the perfect time, she will be asleep during the procedure, totally relaxed, so there is still an element of a judgment call because the heart won’t be acting completely normal under such “chill” circumstances. 

It’s pretty tough knowing that we will reach a point where we just can’t give her what she needs to survive anymore, and knowing that we will see her start to struggle before she can thrive – let alone knowing the pain she will go through with 3 open heart surgeries. Having her home is so wonderful, but it will make it even more painful when we have to take her back to the hospital.  We have another pediatrician appointment in a week to check her weight, and in two weeks we will have another cardiologist appointment as well as meet with her surgeons. We were told to expect to set the surgery date at that appointment…but nothing has gone as planned, so we’ll see!

Things are just starting to feel a little abnormal, with the frequent dr appointments, the new medication, and Sunley’s trouble with weight gain. As hard as it will all be, I think when it’s time for her surgery we will all be a little ready to get it over with. The day-by-day nature of all this is pretty exhausting. Still, I’m so grateful that we have been able to postpone her PA banding surgery as long as we have – She’s had so much time to bond with us, get stronger and older, and we hope this will mean an easier recovery in the long run. 

Praying for weight gain and clear answers in the next couple of weeks.

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Sunley's First Five Days

<Sunley Summit has HRHS, specifically DILV with a large VSD, and TGA. She has either DOLV or DORV, which will be determined during her Glenn procedure in a few months.>

It has been an intense five days. I’m sorry that I haven’t been able to blog more frequently. I pictured NICU days with lots of down time, but it just hasn’t been that way. I’m trying (and failing) to get enough rest to recovery physically from a very difficult birth, pumping every 3 hours for Sunley, feeding her a bottle every three hours, followed by 10 minutes of attempted breastfeeding, trying to make time for my older two kids…you get the picture. Most everyone has been following the little snippets I’ve posted on facebook, but I’ll recap for those who haven’t. If you’re already caught up, just scroll to April 30th.

April 25, 2018

We were called in to the hospital for our induction at 6.30am, and arrived by 7. I started Pitocin at 9am, and contractions began immediately. I had been having contractions all day on the 24th, and was already 2cm and 70%, so I was fully expecting a quick delivery. For this reason, and because I’ve had not-so-great epidural experiences with my first two, I decided to try for no epidural. Long story short, after hours and hours of very little progress with back-to-back contractions, I started to worry that I would be too tired and weak to push when the time came. I opted for an epidural. I’m not sure if the epidural didn’t fully work, or if it was just a smaller dose, but it was PERFECT. I felt every contraction and could still move my legs, but nothing hurt. I’m so glad I opted for the epidural, because it got my through a pretty long day of strong back-to-back contractions. Unfortunately, the no pain thing ended at about 7cm. I’ll spare details, but the last few cm were pure torture. Finally, I was allowed to push, and Sunley came pretty quickly after that. The last few minutes had some complications which left  me more injured than with my first two, but not everyone wants those details ;) Just means a longer recovery that I’m still working on. Sunley Summit was born at 8:56pm after 12 hours of labor.

The doctors immediately started checking her out. I couldn’t believe how healthy and pink she looked. It wasn’t as chaotic as I had pictured, and I’m thankful for that. Unfortunately, they couldn’t get an IV in after three pokes, so they decided to put in an umbilical line (UAC and UVC lines). Because I’d had time before now to research possible outcomes for Sunley, I knew that a UAC would mean that I would not get to hold her, so I asked for them to hand her to me while they prepared for the procedure. I’m so thankful for that minute I was able to hold her. I looked in her eyes and told her that lots of people had been waiting for her and praying. I told her not to be scared, and that we loved her, and that I would hold her again as soon as I could. The procedure took quite a while. I heard the woman who started the procedure tell the doctor in charge “I haven’t done this before,” and I almost came out of the bed and took over, but I refrained. The line placement went well, and off she went to NICU4 with her daddy. I got to visit her just a couple hours later. We could touch her and talk to her, but just couldn’t hold her. She had an echo that night which confirmed her HRHS diagnosis. The night was rough. My nurse missed every single pain dosage by over an hour – if I didn’t call her for the pain pill (which was a very low dosage anyway), it wouldn’t come, so I got pretty behind on recovery from the get-go.

April 26th

Recovery with a baby in the NICU is NOT easy. I had to come all the way back to my room just to use the bathroom, or to get my pain pill, or to pump (I found out later that I could have pumped in the NICU but I didn’t know that at the time). I took a wheelchair of course, but those trips really wore me out (and Derek, too). Toward the end of the day, one of the nurses started hinting at the possibility of me holding Sunley with the UAC line in. There was debate over this, and we decided to wait another day before deciding. She also had another echo, because her heart is very difficult to understand. The doctors can’t tell if she has any right ventricle at all, and they won’t be able to tell until her Glenn surgery, when her heart is opened.

April 27th

I finally got a great nurse, but unfortunately was getting discharged so I didn’t have her for very long. I was very upset about being discharged without my baby, and went to the NICU to tell Sunley. I was shocked and SO happy to arrive and see her without any umbilical lines!! Being able to hold her so soon after her birth took away a lot of the sting of having to leave her that night. I went back to my room to gather up my stuff. I asked one of the nurses if I needed to use a wheelchair to leave. She said, “You don’t have a baby, right? Ya, it’s fine, you can just walk.” I know she didn’t mean to be insensitive, but that sentence about knocked me off of my feet. I stayed with Sunley for a long time after being discharged, but eventually I had to go home without my baby. That was a very long night.

April 28th

After 3 consecutive 2-hour chunks of sleep (pumping all night), I headed to the NICU at 6.30am and stayed all day. This was another recovery mistake. I didn’t take any snacks or water, and it turns out that all the hospital restaurants are closed on the weekends. I got a little dehydrated, exhausted and hangry. Derek, Mom, and the kids came up and we did lunch at Chipotle across the street, but I just totally overdid it all day. Sunley, however, had a good day and even breastfed like a champ. In the evening, she had one bad feeding and wouldn’t finish her bottle. The nurse practitioner wanted to put in an NG tube to supplement her feeds, but I and the NICU nurse disagreed and I finally went home and left a note that they did not have my permission to put in a tube overnight. Fortunately, the rest of Sunley’s feeds went very well and the nurse practitioner didn’t suggest a tube again. That evening, Derek got up with me after all my pumping sessions and cleaned the pump parts which gave me about 10 minutes of extra sleep each session.

April 29th

I knew I couldn’t have another day like Saturday, so I asked my mom to go to the NICU and snuggle Sunley in the morning so I could have an extra hour and a half of sleep (I don’t think she minded). I got up there about 9 or so, just after her chest Xray, which was clear of anything major. We are VERY blessed that her Aorta developed properly. I went home in the late afternoon to play with my older 2, who have been missing their mommy, and Derek went to the NICU in the evening.

April 30th

Sunley’s case was presented to a room full of about 200 doctors in the early morning. We were told that they would discuss her case, and decide what the best plan was for when to do her PA banding surgery. Derek and I went to the NICU at 8am to wait for cardiology to make their rounds. I think they came by around 10.30. We were SHOCKED to find out that because Sunley is doing so well – her pulmonary artery and aorta are holding balanced pressures, she isn’t on any meds, her O2 sats are steady (80s and 90s) – the doctors have decided to discharge her and just monitor with frequent checkups. Now, a few things before anyone gets too excited:

Sunley is still very, very sick even though it’s hard to see.

Sunley will still have at least 3 open heart surgeries before the age of 3-4.

We don’t know how long we will get to have her home before we go back.

We are still processing everything, and trying to get things ready, which is why it took SO long to get this news out today. While we are SO excited by this news, we are also terrified. Her body is in and will be in a very delicate state for the next several months. As much as I want everything to be normal, she is not a normal newborn. Getting a cold could be catastrophic for her (as in she could die), and with 2 kids at home we are nervous. But. This is MAJOR answered prayer! I never dreamed I would get to bring her home in her going-home outfit that I bought before her diagnosis. We will actually have time to enjoy her at home without the sternotomy precautions, without meds—this is going to be wonderful.

She will have very frequent checkups, and will most likely be put on some medications eventually in order to postpone the surgery as long as possible. We may get her home for just a few days, or we could end up having her here for a month or two. Sunley’s body will decide for us.

We know why this happened. God is listening to His people pray. That’s all there is to it. Thank you all from the bottom of my heart for your prayers. They are working. And please don’t stop.

We have a lot of things to figure out over the next two days, and prayers are greatly appreciated! We are feeling every emotion. We are happy, exhausted, scared, numb, and so so grateful all at the same time. Soapbox: Please be understanding if you visit and we ask you to “scrub in” before entering our house, or if we see you out and don’t let you touch Sunley. As much as we don’t want to be overbearing, we HAVE to follow the doctors’ advice and protect our girl so she can continue to be strong for her surgeries. We won’t be taking her out anywhere for a while, and IF she does get to be home for a long period of time and we go to church, I doubt that we will allow her to be passed around. This is all very overwhelming, and if you think we are over-reacting…we aren’t. Soapbox over.

And another side-note:

The discharge may not happen. Heart babies are known for being day-by-day. It’s very possible that something could change even by tomorrow, but for now I’ve just decided to try and enjoy all of this significant answered prayer.

Things to pray for now:

Clarity and strength as we navigate yet another life-altering routine change. Help her symptoms to be clear when they start, so we and the doctors know when it’s time to go in for surgery.

Please Lord help my Sunley be a quick healer with no complications after her surgery.

Help the older kids to be ok when she (and Mommy and Daddy) have to go back to the hospital.

Please pray for our positivity and strength as a couple and as a family unit.

Pray for my mom, as she is making MAJOR sacrifices in order to help us during all of this.

Pray that no other health issues arise that could compromise Sunley’s surgery or recovery period.

Pray for her surgeon, Dr. Carlos Mery.

We are all attached, and we need Sunley in our lives now. I can’t imagine ever going back to not having her. So please pray that we don’t have to, and that we are able to just enjoy this gift of having her home for a little while instead of filling the time with worry.

Gearing Up for Sunley's Arrival

It has been WAY too long since I’ve posted an update! Since my last post, we have gotten our kids back in Houston with us and met with Sunley’s surgeon.

I’ll recap her diagnosis once again: Currently, her diagnosis is still Hypoplastic Right Heart Syndrome (HRHS), which is a broad term used to group together a number of different combinations of heart defects. You can have a group of patients with HRHS, who all have slightly different defects. It is less common and will sometimes have (very slightly) better outcomes than Hypoplastic Left Heart Syndrome, and we are grateful for that answered prayer. HRHS is the broad diagnosis for her specific groupings of heart defects, and basically means that Sunley is missing the right half of her heart. Right now, the doctors think that she has Double Outlet Right Ventricle, Double Inlet Left Ventricle, malposed Greater Arteries, and a massive VSD. They are not sure that she has any right ventricle, however, so those specific defect details may change slightly after she’s born, but they are confident that it will remain HRHS. There is no cure for HRHS, but the plan is for Sunley to undergo palliative care, which will include at least 3 open heart surgeries. Palliative care means that she will never “get over” her heart condition, but if the surgeries are successful, they should increase her lifespan (Without surgery, Sunley wouldn’t make it more than a few months max), and possibly get her well into adulthood. The surgeries she will have (PA Banding at 1-2weeks old, Glenn at 3-6 months, and Fontan at 3-4 years old) have very good survival rates for the surgeries themselves, but the tricky part comes afterwards. These surgeries are all about achieving good Oxygen Saturation levels. Healthy Sats with a healthy heart are at 100%. As Sunley’s levels drop, the surgeons will decide when it’s time to go in. We won’t know if the surgery is successful until we know her sats afterwards. They will never be 100%, but hopefully we can get close. If they go well, then she won’t need a heart transplant (at least not yet), and that is our goal! I’ll hold off on too many of the details, since I’m still learning myself. I will say that it has been VERY hard to make the decision to put her through so much surgery and trauma without knowing if it will even work. It’s possible that she could go through all this for just a few extra years, and that’s pretty difficult to think about. But, the doctors feel that she has a lot of things going good for her—No aortic narrowing, no brain anomalies, etc. Really, it’s a miracle that she doesn’t have anything else unhealthy going on besides her heart. All of that makes us and the doctors feel like she has a really good shot at reaching adulthood and beyond—possibly even a very “normal” life. (What does that even mean anymore?!)

Our meeting with the surgeon (Dr. Carlos Mery) went very well. We aren’t 100% sure that he will be available for her surgery when it’s time, but we’ve been told that it will be either him or Dr. Heinle, and I’m very glad for that! We feel good about all the surgeons there, but our “sources” have told us that these two are the best. I’m very thankful for “sources,” and very thankful that we had time to do the necessary research to put our minds at ease. I have learned that doctors tend to give you only the necessary info (so as to not overwhelm you) unless you ask very specific things. I have become pretty obsessed with research (duh), and I think the doctors have been surprised with how much information with which we’ve come to the meetings. I’ll just say…There were flashcards…and a binder. Some of my questions for the surgeon really surprised him, and I’m not sure how doctors feel about me being so blunt but…we are talking about MY BABY, so blunt is what you’re getting. I’m slowly getting over the awkwardness of asking tough questions, and the doctors will slowly get over the awkwardness of…well, me. We’re all in this together ;)

Speaking of awkwardness, the neonatologist that we met with told me to expect about 20 doctors/residents/students in the room when I deliver. So I decided to get a pedicure with a really bright color to distract from the obvious main attraction. That will work, right? If you didn’t see the blog post from earlier, I met Dr. Adachi’s (another pediatric heart surgeon here) neighbor last time I had a pedicure, and it was just so encouraging and such a God thing. So a couple days ago, when I was getting another pedicure at the same place, the women around me started marveling at my giant belly (it’s quite the conversation piece wherever I go), and the woman seated next to me started asking more specific questions:

“When are you due?”

“I’m getting induced on Wednesday!”

“And where are you delivering?”

“Well, we have to deliver at Texas Children’s because she has a heart condition.”

“Oh wow—I used to be a CVICU nurse there!”

“What?! No way!”

“Yes, so I know all about those babies. Do you mind me asking what her condition is?”

“Hypoplastic Right Heart.”

“Oh, so she’ll be getting surgery. Have you met her surgeon?”

“Dr. Mery.”

“You’re kidding me! I’m one of his nurse practitioners, so I’ll probably see you next week!”

My jaw probably hit the floor. Houston is HUGE, there are a million nail salons, and twice in a row, I’ve sat by incredibly kind people who just happen to be very closely linked to our doctors. I can’t really explain the kind of comfort that has provided, but it is SO answered prayer! It really does feel like God reaching down and saying “I know this hurts, but I AM HERE, and I am listening.” He keeps sending us the most amazing people! So even if the worst happens with Sunley, don’t think for a second that your prayers have gone unheard—God has completely taken care of us already.

Today was Sunday, and Derek was scheduled to speak for both services at Deer Park. They had a luncheon in between the 10am and 1pm services, and we were bombarded with baby clothes, diapers, gift cards, and all kinds of thoughtful notes and encouraging conversation. I was so overwhelmed by the thoughtfulness that everyone showed. Afterwards, we went to Fairbanks for their 4pm service, and they held a special prayer service specifically for Sunley and our family. It was extremely emotional, and after the service we were given a GIANT basket of goodies and gift cards. The whole day was full of just exactly what Christianity should always look like, from both congregations – Completely genuine love for each other. Pretty much the most perfect way to “gear up” for what this week holds!

Wednesday is the big day, Lord willing. Right now, I’m at 1 cm and 50% effaced. My induction is scheduled for the morning of the 25th, Sunley will hopefully arrive sometime that day, and she’ll have to come out fighting. Unless God miraculously heals her (Yes, please), she will pretty quickly start turning blue and taking very fast breaths. The team of doctors will attempt to stabilize her (hopefully not too distracted by my adorable pedicure), and if they can get her stable in the room, then I should get to hold her for a short while before she is wheeled off to the NICU or CVICU. There are about a million different things that can happen, but the few things I am fervently praying for are:

1. Miraculous healing, because that would be pretty rad.

2. That she can breathe on her own without needing intubation

3. Breastfeeding success

4. Little to no sedation necessary. I just really hate the thought of a sedated newborn :/

I know that at least 2 of those are a giant long shot, but I’ve seen God do incredible things before. The best thing about being a Christian is KNOWING God can do anything, and the hardest thing about this situation is KNOWING God could have done anything. I don’t feel angry, but there are certain parts of this that are VERY frustrating—mostly the part where I don’t know if these surgeries will give Sunley a full life or not, and mostly the part where this is really going to affect all 3 of my kids. I spent the first month or two of this diagnosis process looking for a story of someone whose life wasn’t completely traumatized and altered by their child’s or sibling’s CHD and…it just doesn’t exist. The fact is, this is going to be traumatic to our whole family no matter how well or how poorly Sunley does. My kids will all be affected. So, I guess instead of trying to stop it from being traumatic, we just need to focus on teaching our kids how Christians handle trauma. I think we could end up doing some real damage if we tried to shield them from all of it, or pretend like it’s no big deal. I don’t want to go into it too much, because they both deserve their own privacy, but I can tell you that this process has already been a struggle for both Hadelyn and Ruger, and even if Derek and I do everything perfectly (which we won’t), there will be some negative side effects of all the instability and chaos. We are trying REALLY hard to give them some firm landing ground, but their world has been ripped apart too and that’s extremely painful to see. I will say, though, kids are a lot tougher than adults, and though they have their struggles, they are largely loving the adventure (and especially the pool at our apartment). And I am loving the big closets.

As exhausted as I am being 9 months pregnant and with 2 little kids, I’m so happy to have my babies here again. It was great getting a couple very normal-ish weeks of just the four of us. Mom arrived last week too, and we were ALL so happy to see her! There is nothing like having your mom carry you through the tough stuff. She and my dad have already made some GIANT sacrifices with their time to help us out, and I really don’t know what we would have done without them these last couple months. Mom is planning on staying through the first surgery, and will go home when things become a little more stable. Derek’s parents (who are keeping our dog in OKC by the way) are also coming for the birth, going back home to OKC for the arrival of ANOTHER granddaughter (yay!), and probably coming back for Sunley’s first surgery also. My youngest sister and her husband are coming for the birth, and we have tons of other family that will come when it’s a bit less crowded and hectic, and for when we need more reinforcements later on. My friend Lori Faber is coming this week to take some pictures of Sunley’s first few days, and that’s pretty much ridiculously kind and special. We are immensely blessed to have so many friends and family willing to just drop everything and help. I don’t know how in the world I could express what that feels like.

I was really worried when all of this started that I would be lonely here, and I haven’t felt that way for one second. Jamie, one of our best friends from Australia, recently moved to Dallas with his wife and family, and he made the drive out to visit us which was so encouraging. We’ve gotten to attend a meeting at Deer Park here with Cullen Smith and his family, which was just wonderful! The congregations here have been just so amazingly supportive, and we’ve picked up friendships right where they left off when we moved from here years ago. And we expect a lot more visitors through the rest of the year, too. I don’t think loneliness will ever be a problem while we go through this :)

Things are unbelievably tough right now, but they are equally sweet and meaningful. Derek and I are processing and feeling things very differently, but still TOGETHER, and our marriage is deeper and stronger than it was before-- I pray that it continues that way. I can’t speak for his feelings throughout all of this, because we are two different people, but I can say that I don’t feel scared. Maybe I should, but I just don’t. I’m not exactly happy about the situation, but I don’t feel anger, bitterness, or fear. I think the most “down” feeling I’ve felt is just frustration and feeling disappointed that I wasn’t able to dodge this bullet. Of course, there’s a roller coaster of emotions in any given hour—Part of that is the diagnosis, but part of that is just pregnancy hormones. Mostly, this week, I’m just excited to meet my little girl.

Photo below by Amy Sample of Lovebird Photographie

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Latest Echocardiogram

Well, in keeping with how the process has gone so far, we might have a slightly different diagnosis for Sunley soon, although it will not change her plan of care or prognosis. Before today, her diagnosis was Hypoplastic Right Heart Syndrome – Double Outlet Right Ventricle, Double Inlet Left Ventricle, a large VSD, severe Hypoplasia of the Right Ventricle, and slightly malposed Greater Arteries. After the Echocardiogram today, we aren’t sure that Sunley has any right ventricle wall at all, which IF that is the case, would change her Double Outlet Right Ventricle to Double Outlet Left Ventricle, which would make her anatomy even more EXTREMELY rare.  This isn’t worse or better, just different. We won’t know if she has Outlet Right or Outlet Left until after she is born. Either way, she will still most likely have a pulmonary banding surgery around a week or 2 old, a Glenn procedure around 3-6 months old, and a Fontan around 3-4 years old. This is the same plan we’ve had since January, so no surprises there. Her body (specifically her lungs) will hopefully respond positively to these surgeries and allow her to live a relatively normal life. Each case is very individual, and thus completely and utterly unpredictable, which we are slowly getting used to.

The doctors also couldn’t tell if her arteries are crossing at all (normal arteries cross into the separate ventricles). So, she may have Transposed Greater Arteries or just malposed, but not too severely. They can’t tell if there’s an extremely small right ventricle that barely formed, or not one at all. This could affect the pressures which will determine when her surgeries are. That is all very much in a nutshell—it’s all very complex because, ya know, GOD DESIGNED IT and it didn’t just happen by chance. Somebody tell Bill Nye he needs to look at the complexities of a perfect, working heart. But I digress. If there is a small right ventricle, I THINK that means that her pressure could be slightly better. But honestly, I’m not sure I fully understand that part yet, so I’ll move on.

We don’t have to look far to see major answered prayers. Though there has been no improvement in her condition, I am beyond relieved that nothing is worse. Specifically, her aorta should be malformed and it’s not.  Her tricuspid valve shows very minor regurgitation, but nothing that the doctor is concerned about, so I will pray that remains the case. Also, right now, even though all the blood is mixing instead of separating (In a normal heart, the blue blood and red blood separates and goes to different parts of the body), the blood is flowing in the correct directions.

We were able to spend more time with our AMAZING cardiologist (Dr. Nancy Ayres) this time, and were able to understand things much better than last time. The pulmonary banding surgery will require surgeons to open her chest, but they shouldn’t have to stop or cut into her heart, which means that it does NOT require bypass!! She also might not need that surgery for quite a while, if her breathing and saturations are good enough. That was really good news. The doctor is “pretty positive” that she will need that surgery, but it’s just too difficult to predict when that would be. She even mentioned the slight possibility that we could bring her home to the apartment before that surgery. How wonderful would that be?!

We also had a tour today of the NICU and the CVICU. We saw lots of strong little babies, and some very VERY exhausted parents. While it was a lot to take in, more information is always good, and we are just that much more prepared for what we are about to do. Our tour guide told us that our kids would not be allowed to come into the NICU, but we found out later from the Neonatologist appointment that they ARE allowed in, as long as their vitals show no signs of sickness (The nurses will take their temperatures each visit). Relieved to hear that. Hadelyn needs to see her sister, in my opinion. Ruger…might not care too much. I was also happy to hear that I can bring my cameras in to take photos. Every NICU/CVICU has different rules, so I wasn’t sure what to expect before today.

The neonatologist who we met with was very encouraging, and spent a great deal of time discussing the importance of faith and prayer in medicine, which made us feel right at home. Overall, we just feel like we have the BEST team here. Everyone has been blunt when they need to be, but still very encouraging. We have had some difficult discussions about different options, and we feel like we can really rely on the advice we get from everyone here, if and when we are faced with the really tough decisions on her care.

There are absolutely endless possibilities with Sunley’s future, both short and long term. Our surgical plan is really just a rough draft – Everything will be very day-by-day, and that has taken and will take a lot of getting used to for us. Our doctor discussed some possibilities for other surgeries she may need, but they aren’t even worth mentioning, because she is currently just as likely to not need them as she is to need them. She may respond really well to breathing, eating, noise…or she may need to be intubated, tube fed, etc. Her surgeries may “take” easily, or they might not, thus drastically or immediately shortening her life. There are hundreds of risks and different routes that her condition could take, so that’s why it’s so important that we find a way to function as a family in our new day-by-day normal.

Both doctors that we met with today seemed really surprised that we weren’t a crying hot mess. We explained our faith to them a little bit, but they didn’t seem used to seeing people NOT crying. I’m not sure if that made me feel encouraged or not. Like I’ve said, I definitely have my meltdowns (we both do), but it just is what it is. God is finding ways every day to strengthen us, mostly by sending us really loving helpers.

On Tuesday, a very talented photographer friend offered to shoot a maternity session for me. Since I can’t find my nail polish anywhere, I decided to squeeze in a manicure before the shoot, even though I didn’t really have time. I Googled the closest place, and walked in without an appointment. The nail tech started asking me about my pregnancy, so I eventually shared with him some of her health issues. A few minutes later, the woman sitting next to me said, “I’m sorry, I’m not trying to eavesdrop, but I could hear you saying that your baby will have heart surgery, and I just wanted you to know that I’m praying for you.”

She was so kind, and invited me to her church, very genuinely asked if there was anything she could do, and I kind of figured it would end there. But get this:

“I’m actually a neighbor of Dr. Adachi—our kids play together, and he is a really good man and surgeon.”

Dr. Adachi is one of the congenital heart surgeons at TCH, and suddenly I felt like I was talking to a celebrity. He could very well be the one operating on Sunley at some point. She gave me her name and phone number, and said she would mention our name to him. I mean, COME ON. That is not a coincidence. If my friend hadn’t offered me a session, if I had found my nail polish or gone to the nail salon at any other time, I never would have met her. I did text her the next day, and she really is such a kind person. I have no idea what will come of meeting her, but it was very encouraging, and I look forward to seeing what God does with this new connection, even if it’s just receiving some encouragement through the process, or finding a way to give back and help others after we get through this part. By the way, our photoshoot was so fun, and Amy got ALL of the photos back to us within 24 hours which is INSANE impressive. I didn’t realize how much I wanted a maternity shoot until I had one! Unfortunately, Amy knows all too well the grief that comes from watching a child suffer. She has been a well of strength and encouragement for both of us, and she’ll probably never fully understand how deeply grateful we are to her.

One thing I’ve had a hard time with lately is communicating my optimism to people without downplaying Sunley’s prognosis. I really don’t want people treating her like she’s sick for her whole life, but I think sometimes I overdo it on the positivity, to the point where people think we’ve found a real “fix.” There is no cure for what Sunley has. Statistics are pretty irrelevant because treatment is still very new, and because each baby reacts so differently, AND because her condition is very rare. We can’t predict whether or not her heart will bear the extra workload, but we have chosen to put her through all of this medical intervention because there is a chance she can make it to adulthood and have a very full life. I’m mostly good about not dwelling on the negative possibilities, but of course those possibilities are always there. We’ve had lots of people ask us about heart transplants. We are very VERY much hoping to not go down that path because:

1.     Hearts for babies rarely become available

2.     The wait for a heart can do a lot of damage to the rest of the body

3.     Anti-rejection meds are rough on the body

4.     You are more likely to get cancer with a heart transplant

5.     Heart transplants typically do not last longer than 10 years (often, less).

So, if she got a heart transplant as an infant or young child, it would most likely not be the last, and it would definitely altar her quality of life. That doesn’t mean we wouldn’t consider one at all if her surgeries don’t turn out well, but it just means that heart transplants are not a cure, and are not as cut-and-dry as I thought they were.

Just a few of the hundreds of things I am praying for now:

Sunley will not need prostaglandin.

Sunley will not need a PA banding surgery for a while, if at all.

Her surgeries will WORK and giver her really high sats.

Sunley will not need any extra surgeries.

God will show us how we can fit into and help the heart community long-term.

Sunley will not have scary long-term complications from the surgeries.

 

Thanks everyone for the encouragement and prayers! (Photo below from Amy of Lovebird Photographie here in the Houston area)

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