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)




Induction Scheduled

We got to meet my new OBGYN today, Dr. Ivey, and we LOVE him! I have been so impressed with all of the TCH staff thus far. He is, however, a UT fan, but you know what? We all make bad choices from time to time ;)

I was very happy with his gameplan. We are planning (and we all know plans can change) a vaginal birth, induced at 39 weeks. That means we have a date! Sunley will be here, Lord willing, on April 25th, as long as she doesn’t come early (like Ruger did). We do NOT want her coming early, because a bigger baby is a stronger baby and Sunley needs to be STRONG for her first surgery! I’m very happy that, so far, there is no need for a C-Section. I’ll do whatever I need to in order to get her here safely, but a vaginal birth is the very last “normal” thing I have left of this pregnancy, and I do hope it works out that way. She’s already head-down (good girl) and I’m carrying very low like I did with Haddie Mae, so all that is great. We don’t know yet if/when I’ll get to hold her, but the staff so far seems to really understand the importance of Mommy/baby time, so that’s encouraging. If she is stable when she’s born I should get to hold her before she is wheeled to the NICU or CVICU. That would be awesome. Even though the doctors anticipate her needing a feeding tube, they want me to try to breastfeed her when she’s born, which is also great. Most of the time, hypoplast babies are too tired to breastfeed, but we are praying Sunley will do ok with it.

If you’re like me, it’s difficult to know what exactly to pray for. There are SO many routes that Sunley’s condition could possibly take us down and SO SO SO many unknowns still, so I’ve found it difficult to be specific in my prayers. A lot of my praying lately has just boiled down to “Lord PLEASE.” I want to pray for complete healing, I want to pray that she doesn’t have any other abnormalities (especially chromosomal), no blood clots, no brain damage during surgery, as little bypass as possible…I want to somehow cover every single scenario, but it’s endless. So I just say PLEASE.  We do have our next Echo (heart exam) this Thursday afternoon, so specific prayers for that to go well are appreciated.

We sent the kids to Midland this past weekend to stay with my parents until April 6th. It was VERY hard. Today alone solidified that we had made the right decision (we are both VERY busy with appointments almost every day), but it’s still tough to be separated from them, especially when it’s not really by choice. We are, though, really enjoying the one-on-one time together, which would not be happening without such circumstances. Silver lining :) We can actually have a FULL conversation without getting interrupted! On Sunday night, we decided to take advantage of no kids and go out to a nice restaurant for dinner. Yall, I don’t want to brag, but we were out until 8.30 AT NIGHT. It was wild.

Tomorrow, I plan to do some grocery shopping, lunch with a former-client-now-friend, two Dr. appointments, take a nap (this is becoming a daily thing), and then I get to have a photoshoot!! A very VERY sweet friend here in Houston has offered to do a maternity shoot for me. I did a “self-portrait” maternity shoot in Galveston when I was pregnant with Hadelyn, but I haven’t done an official session with another photographer since my wedding, so I’m looking forward to it!

We are still getting cards and very sweet gifts from people in the mail every week. It’s AMAZING to me how far and wide our church support spreads—Amazing, but not in the least bit surprising. That’s exactly what the church is designed to do. People I barely know have sent incredibly encouraging notes, and it seriously is SO uplifting. I hear that Sunley’s name gets mentioned in sermons all across the country, and I really can’t express how much that means to me. Our church family is the bomb, just as God intended…Although I doubt He would use the term “bomb.” He might say “pillar of stone?” But I prefer “bomb.” I digress.

What’s amazing about all of that is how completely normal it is, and I wish people who aren’t Christians could experience what it’s like to receive that kind of unconditional love and support, because I think that’s how you really experience the freedom that Christianity provides.

Derek and I have been through really REALLY hard things now, and honestly, it’s only just beginning. We are separated from our kids, from our friends and home, from literally everything that we’ve built in our life together. And yet, we both still feel like we have a GOOD life, because our faith has freed us from worry. It’s a daily battle to not worry (hence my last blog post), but overall, we are freed from it. We have no control, but we know who does.

I’m definitely starting to ramble, but I hope my point got across. I’ll try to pray for some specific things tonight:

1.     Sunley makes it to the induction date.

2.     Sunley is able to breastfeed.

3.     Thursday’s echo shows nothing worse…maybe even some improvement? Mustard seed faith over here.

4.     More happy days than hard ones...Like days from the photo below. That was a really happy, simple day, when my biggest was not so big :)


Spring Break Wrap Up

Thursday, March 15:

We all had a great day today, which is why I’m surprised that the last several hours have been spent pouring over medical articles that I can’t possibly understand, and news headlines about Dr Fraser, leaving me completely overwhelmed again.

The kids have about 2 days left with us, so I really wanted to make the most out of today. The weather has been BEAUTIFUL, and even though I know I need to be taking it very easy, I also wanted to take advantage of it before it gets too hot! The kids and I did a very slow and easy stroll in Hermann Park this morning. Hadelyn especially loved all the pollen bits falling from the trees (and is now reaping the benefits in sniffles), and Ruger tolerated the walk, but would have much rather been out and playing in the dirt. We came back home and Ruger had a short nap while Hadelyn and I baked cookies. Later, we dropped off some dry cleaning and happened to pass by a gorgeous park that had free bouncy houses set up, so we HAD to stop. We spent about an hour or so there, and headed home for naps. Derek got off work surprisingly early (we had all expected him to need to work late tonight), so that was great! At 5.30, we braved rush hour and met Tory Blake and James Frizzell for dinner at Catfish Station, which was DELICIOUS. They were passing through for work, and it was so great to get a chance to catch up!

Derek and I were both exhausted when we got home, but he had promised Hadelyn that the two of them could go to the fitness room before bed, so I did Ruger’s bedtime (which did NOT go smoothly) while they did their stuff. Afterwards, the kiddos finally went to sleep, Derek headed to the sofa to read, and I opened up my laptop. And there it was – Another story of a 3 year old heart warrior (and Houston patient) who passed away tonight, and her mom’s emotional facebook post. I immediately started spinning and dove in way too deeply. What was her exact diagnosis, who did her surgeries, what could have been done differently, etc., as if anything would actually answer why these things happen. Sometimes, I think I’m more afraid of what Sunley will go through than I am of actually losing her. Have I done enough research? Are we really at the right hospital? And then another Google rabbit hole.

Dr. Fraser has been the chief surgeon at TCH for a very long time. He’s pretty much a walking legend. He trained under Roger Mee (another living legend) and married Dr. Cooley’s (super famous pediatric surgeon) daughter. Dr. Fraser is from Midland and I can’t even count how many people have recommended that we find a way to get him as our surgeon. He’s also leaving Houston this month. It doesn’t actually matter – all the surgeons at TCH are amazing. But I can’t help but be a little worried – Plus, it’s just ANOTHER thing that I have NO control over. Even if I could control who does Sunley’s surgeries, it’s not like I actually know anything about who would be best for her specific case. A few months ago, I didn’t even know what a pulmonary banding surgery was. We’ve been assigned (so far, and we know it could change) to Dr. Carlos Mery, and we have heard wonderful things about him. So I can’t explain why it’s stressing me out so much that Dr. Fraser is leaving. Maybe it’s just a place to direct my stress. I don’t know.

Whatever the reason, it all became too much tonight, and tonight I’m just going to let myself be sad. I hate that this happens to anyone, and I really hate that it’s happening to us and our sweet, sweet babies. Nothing about this is easy. So tonight I’ll be sad and overwhelmingly frustrated, and I’ll pray, and tomorrow will probably be better.

Friday, March 16:

Today WAS better. I don’t have anything to update, but we had a wonderful family day (We even went back to the same park) and now the kiddos are sleeping peacefully in their beds. I spent a little extra time on bedtime tonight, since it’s our last for a little while. They will leave with my parents late tomorrow, and we’ll see them again Lord willing on April 6th. April 6th will be a good day :)


Our First Days in Houston

I've been wanting to update everyone for a while — but it has been JUST CRAZYTOWN over here.

First of all, I want to say THANK YOU to everyone who has been helping us out. We’ve had friends and family step in and help us handle our almost-finished flip house in OKC, OUR house which we are now renting here in Midland, as well as a friend providing almost all the furniture we will need in Houston. A couple weeks ago, my sisters and mom threw me a surprise baby shower, and we got several Target and Amazon gift cards and all the new baby goodies we are going to need for the apartment. We’ve also gotten tons of encouraging notes in the mail, and a gift of a year long membership to the Children’s Museum here. All this to say, we are being well taken care of and loved on :) Derek’s parents have our dog, and my parents will soon have our kids for 3 weeks.

I get a lot of questions about our plans. Here is what we have done or have planned so far:

March 5th: Renters moved into our Midland House. We’ve gotten it cleaned out, made some minor repairs, furnished it, and conquered the very long process of changing our address on all of our accounts so that the renters don’t get loads of our mail. We’ve had some pretty big hiccups already, but they are in now, and we have friends who will be doing the managing of it which is a MAJOR blessing! Also, our flip house in Oklahoma is finally done, so finishing touches are being managed by Derek’s dad, and we’ll soon have it on the market! 

March 7th: Derek and I packed up the van and drove to Houston. Kiddos stayed with Mom and Dad for a couple days.

March 8th: Derek and I moved into our apartment, and furniture arrived. TONS of helpers from church — THANK YOU ALL!

March 9th: Unpacking and free Groceries, thanks to some extremely kind friends from Atlanta!

March 10th: Kiddos came to US for Spring Break!!

March 13th (today): Had an Ultrasound and NST — everything still looking the same. Sunley’s whole body is PERFECT, aside from her heart. This is pretty incredible when you think about how much of the body the heart affects!

March 17th: Kids go to Mom and Dad’s until April 6th. Hadelyn has a program on April 5th and 6th, and until then, I have tons of doctors visits and things to do before the due date. Hoping those days fly by :(

April 5th: Derek goes to Midland for Hadelyn’s school program.

April 6th: Derek and the kids come to Houston for the rest of the summer!

After April 6th, all of our plans could easily changed based on when Sunley comes, and her condition once she’s born. She is due on May 2nd, and doctors are hoping for a 40-week, vaginal delivery. Her first surgery (a pulmonary banding) will HOPEFULLy not occur until she is 1-2 weeks old. We may have to do it sooner if she’s struggling. And she SHOULD get to come home to the apartment after she recovers from the surgery. But unfortunately, those recovery times are SUPER varied for each baby. In fact, some babies stay in the hospital the whole time in between the 2 surgeries. So, the kids being with us for the whole summer will work great if she gets to come home, and not so great if her recovery ends up tricky.

Mid-August: Kids will go back to Midland to stay with my parents until we get to come HOME. Sunley’s second surgery could take place as early as August, or as late as November, so that makes it pretty impossible to plan. This is why we’ve rented the apartment until December. Of course, we want to get home as soon as we can, but from what I understand so far, the longer Sunley has to grow and develop before that 2nd surgery, the better. 

Everything so far is going pretty smoothly, but it definitely feels real now. It’s really great having our kids with us this week, and also it’s really hard to establish a new normal and a routine for the kids, when you know it’s all going to change again drastically in May (or sooner). The kids are both so much tougher than us, but I think they can tell something’s up. We haven’t had any major behavior issues or meltdowns (at least none that are out of the ordinary), but Ruger isn’t napping well in his new room, and Hadelyn keeps asking if she’s being a good helper. I’m trying to find little daily activities for them to just be little kids and not feel pressured to be on their best behavior. We were finally able to get a to a box of toys and they had a LOT of fun making messes today :) I also bought a bubble machine, but I’m saving that GOLD for a rough day.

Now that we are here and the ball is rolling, I can definitely feel things approaching, and that’s kind of hard to deal with. I just feel so removed from what’s been normal for so long, and it’s hard to even understand what I’m feeling. I’m not really sad or angry or happy — It’s like I don’t really know how to be myself yet in this new world we’re in. I’ve kind of felt like a bad friend lately because I’m struggling to keep up with everyone, but I’m just very consumed with what’s happening right now, and all of my social energy is being put into my kids and husband. I feel like every time I try and have a simple phone chat with someone, I bring down the mood simply because I don’t have much to say. So if you do call me, just set the bar low for me please ;) I’m not grumpy, just EXHAUSTED and very distracted.

On a happier (but not less stressful) note, we have discovered Ikea. We made 3 trips in 2 days before the kids arrived (because Ikea and kids, no thank you) and it was quite the experience. As I mentioned before, a friend is letting us borrow TONS of brand new furniture which saved us THOUSANDS of dollars in moving expenses, so all we needed were a few odds and ends and 2 sofas (one for the living room and a pull out sofa for the “guest room”). We all know that you have to build Ikea furniture yourself. Well did you know that you even have to build Ikea pots and pans? And Ikea pillows? And LITERALLY EVERYTHING. You probably knew that. I was an Ikea newbie. It’s been pretty entertaining. We have also discovered that Target has VERY competitive prices to Ikea, less and sometimes no assembly required. Our takeaway lesson is: For big things (like sofas), Ikea is worth it, but for anything small, Target is usually competitive (sometimes even cheaper), almost always cuter (yes, husbands, this matters), and comes at least partially assembled. Also, a minivan with all the seats stowed can haul A LOT OF CRAP. #minivanmicdrop

Another nice thing is, I REALLY LOVE HOUSTON. There’s these natural-looking, large, green, leafy structures everywhere and they’re nice to look at, and even provide shade. The restaurants are pretty awesome, and aside from Rodeo and Spring Break traffic combined, the driving hasn’t been too stressful. Ah, except I do need to figure this out: I Ubered to my doctors appointments today to save money on parking per the advice of others more experienced than I, and ended up spending the same that I would have spent to park. My Uber ride was $7 each way, and Valet parking at the Women’s Pavilion was $13. I’m new to the TCH parking and new to Uber so someone let me know if they know a secret. I don’t want to be spending that much every single day once Sunley is here. It’s only 2 miles, and I bet I could work up to walking it, but probably not before she’s out of her first round of hospital stay.

I’m also very spoiled already with the giant closets in this apartment. I may have to stay here forever. That combined with more cabinet space than I’ve ever had is making this apartment super comfortable. Alas, I only have 4 pots and pans, a cookie sheet, and like 12 dishes. The irony. I already LOVE living with less stuff (specifically, less kids’ toys. I brought all my clothes and shoes, because I’m an adult and I make the decisions). Of course I really really really miss my house, but all the conveniences here take the sting away a little bit :) Hadelyn will NOT be ready to leave here ever I predict. She can see the pool from her window, and there’s stairs AND an elevator here so I guess Houston apartment life is the dream. She also asks Derek to go work out with her in the fitness room about every 5 minutes.

We’ve gotten a pretty good routine going, which has been good. In the morning, we eat breakfast together, and then Derek goes downstairs to the lobby conference area and works while the kids and I very slowly get ready, and usually run a couple errands. He comes upstairs for lunch, then continues working again until his normal 5.30 or so. We should have WiFi in our apartment by the end of this week, so he’ll soon set up a little “office” in our bedroom. Not sure if this will work as well as him “leaving” for work (I don’t see the kids actually leaving him alone) but we’ll see. Another part of my routine, is reaching for some gadget or tool, and realizing we don't have Scotch tape. It took me 3 Target trips to finally remember to get Scotch tape. Still trying to remember the ice cream scoop (priorities).

We will have a lot of adjusting to do again when our girl gets here, but for now, everything is going as good as it could go. I’ll try to be better about posting updates for anyone who’s interested! Ugh, I just realized we don’t have an iron. That will be a TARGET purchase, because I don’t want to acquire the skill of building an iron. On second thought, I've used my iron probably 3 times. I'm more of a fluff-it-up-in-the-dryer kind of girl. Peace out, iron.

And now, some photos of our latest adventures (all from my phone, so LOW bar please):