Fourth of July

Happy Fourth of July! I think this holiday is tied up with Valentine’s Day for my favorite holiday…probably because it’s HOT outside, there’s hot dogs and fireworks, and Derek actually gets the day off! We had such a good fourth of July compared to last year’s (spent in the hospital). 

The big kids got to be in a parade with the grandparents and great-grandparents at Manor Park Retirement Community, and they were SO excited (and adorable). Of course, Hadelyn needed a super sparkly new outfit, because in her words, she needed to “look like a cheerleader for America.” Makes sense. She rode in the golf cart with the greats, and Ruger rode in the Trans Am with G and Grandmother. I didn’t get as many pics of Ruger, because when he drove past, he decided to be shy <3 Sunley and I walked along with the parade for just a tiny bit, until I remembered that I’m SUPER out of shape and allergic to sweating. Really need to work on that…eventually.

We also got to go to a pool party and cook out with our church buddies, and Sunley LOVED the pool! She eventually got way too cold and blue, so we took her out, but she was in there a good long while. It feels so good to be doing normal baby things. I will never ever take the normal stuff for granted.

Speaking of normal baby things, we’ve been working on flat-foot walking, and making tiny bits of progress. Sunley still has not stood unassisted, and that obviously comes before walking, but we’re getting there. She just knows how fast she is crawling (seriously, SO FAST), and doesn’t seem to care much about walking. We’ll get there! If I remember correctly from her Developmental Outcomes appointment back in May, she won’t need PT for walking unless she gets to 18 months and still isn’t doing it. So, we have a good 3-4 months until then to work on it. And, honestly, a little PT would not be a big deal considering all the other bullets we’ve dodged. Cognitively, Sunley is doing perfectly, which is just wonderful to see. She’s extremely playful and talkative, and loves to wrestle her big brother and dance with her big sister (and pull Hadelyn’s hair…not so fun). 

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The kids are not enjoying the packing happening in our house! The entire house is a disaster zone, with the move coming up in NINE DAYS! We opted to not use a moving company because this is our sixth move, and it’s just SO expensive every time. But, yall. Packing with 3 kids in the house is no joke. My mom has been helping by watching the kids A TON, and I don’t know how it would get done otherwise. And speaking of living next door to my parents, I am really REALLY gonna miss it. A lot. Besides the help, which is wonderful, it’s just been so wonderful to have a buddy next door during the day <3 I love having someone (an ADULT) to talk to while Derek’s at work, and I also looooove seeing my kids run over for a snack. Just melts my heart. I know everyone jokes about living next door to parents/in-laws after you’re married and all, but it’s honestly been so, so good. I can barely think about the move without tearing up, especially now that it’s so close. I completely feel like it’s for the best, but that doesn’t make it easy.

Now, check out these coincidences! A few God-things that He’s done to show us He is right here with us:

1. An old friend contacted me a few weeks ago, and told me that she knows ALL the pediatricians and cardiologists at OU Children’s. She even offered to get us a tour at the hospital when we get there. She’s already spoken to a couple doctors for us, and is getting us hooked up with the right people. 

2. Turns out that Dr Ayres, our Houston cardiologist, knows the chief of cardiology at OU Children’s really well (she trained him, or trained with him, or something like that…) and is also helping us with that hook-up. This also means that, should we need it, communication between OU Children and TCH will be a little easier, which is very comforting. 

3. The 5 acres we decided to buy is around the corner from our new church’s evangelist and his family, who we love! We also found out that it is down the street from some old friends we used to worship with when we were in college in Oklahoma! AAAAAAND, our next door neighbors turned out to be really good friends with Derek’s cousin who lives in Midland. Little connections like that are just warm and fuzzy and make the transition just that much easier. Now I just need to know who I call when Derek is out of town and I find a mouse. Because we all know my body won’t cooperate with that scenario.

ALL that to say, we keep receiving this little comforts, and there are just way too many to each be a coincidence. Just like my crazy nail salon encounters before Sunley was born, God keeps just reminding us that He is walking with us. 

Hadelyn's Lemonade Stand

We had such a fun day yesterday! As most of you already saw on Facebook, Hadelyn asked me a few days ago if she could do a lemonade stand to raise money to help our heart buddies at Texas Children’s Hospital in Houston. I am so proud of that girl. She did it all just about by herself, and it was a lot of work! She made cookies with Oma on Friday, went shopping with me to get all the supplies, and painted the sign. I only helped when necessary. Saturday we decorated, got everything set up the way she wanted (she was VERY specific), and she asked me to call the police and ask them to come since “they like to help kids.” Heart melted. I was actually a little embarrassed to ask, but I messaged the MPD on Facebook, and boy did they come through! I was hoping maybe one officer would come by, but we had over ten stop at her lemonade stand! They really made her feel special.

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Do you remember baby Meredith from a previous blog post? Her grandmother, Melinda, was our last customer of the day. It meant so much to us to have her stop by and support Hadelyn, and meet Sunley! And y’all…I DIDN’T EVEN CRY. I’m basically A ROCK. #humblebrag

We also had so many neighbors, friends, and family stop by. Hadelyn is usually very shy, but she did so good taking care of her customers and we were so proud. Ruger helped, too! He did great filling drinks and passing out cookies. He was NOT shy, and was super eager to participate in the whole thing. After about 2 hours or so, we called it quits and discovered that Hadelyn had received $375 for Sunley’s hospital! She felt so good about the whole thing, and to see her proud of herself made my heart so full. My kids have taught me so much, and by far the best thing I’ve learned is to make lemonade out of life’s lemons!

I didn’t want to make too big a deal out of all of this, but I’ve had several people asking me to set up some sort of online donation site so that they can donate. I looked at a couple different platforms, and I think the easiest way to do it would be to just go through this website. The money will be deposited into my account, and 100% of it will be donated to TCH along with Hadelyn’s $375 raised. 

We aren’t in any way trying to guilt anyone into donating — This is just for those who asked, who were unable to come to her lemonade stand yesterday! Thank you to everyone for supporting her cause and reinforcing to her that when you WRITE WITH LIGHT, good things happen ;)

You can donate by clicking HERE, and click the donate button below the photos.

One Year Since Surgery

June 11th marked one year since Sunley’s first heart surgery. I don’t know how I was “supposed” to feel, but the day was just weird. Any time I experience such a wide range of emotions, it just throws me off. Maybe I would feel differently if her surgeries weren’t considered palliative — If surgery represented a cure, instead of representing what will be a lifelong struggle since we chose this path for her. Hadelyn wanted to have a “surgery party” for Sunley, but we opted not to, since we are actively trying to not make her feel defined by her CHD. I can’t help but let it define a large portion of who I am, but I don’t want to put that on her.

That said, all of these anniversaries have both sad and really happy memories. A year ago, we met other heart families whose friendships really made the whole Houston experience bearable. We spent most of our time with the Blankenships and Finns, and the six of us are trying to plan a reunion soon and get all our kids together at once! What a happy day that will be <3

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Things have been so busy over here! We are starting to slowly pack boxes in preparation for the big move in 18 days! Wow. Actually calculating that and writing it out is INSANE. We never fully unpacked our things since we left in March 2018, so many of our things have been in storage for over a year. 

It’s been such a cool experience getting by without all of those things (kitchen supplies, TOYS upon TOYS, etc). We are hoping to get rid of almost all of it, although I know those boxes contain a lot of keepsakes, too, which I will keep! Out of all the lessons we’ve learned over the past year, the one we keep coming back to is the goal of SLOWING DOWN. It was so incredibly easy in Houston to never be busy, because we basically had one goal: BRING SUNLEY HOME. We missed Hadelyn’s first semester of Kindergarten, so we didn’t have that morning rush each day of getting to school, Derek was working from home, we had just ONE kid in the home…you get the picture. Of course, that’s not real life and we were anxious to get back to it, but now we have this refreshed perspective on what home life should really be like, and the only way we feel like we can keep our focus in the right place, and give our kids the individual attention they deserve, is to NOT::BE::BUSY. Much, much easier said than done!

I’ll admit that the school schedule is probably the biggest hurdle in trying to constantly get back to this mindset — so much so that we’ve considered homeschooling —but the benefits from Hadelyn actually going to school and learning from so many different people seems worth it to us. The challenge during the school year is making the hours at home really count. It’s so tempting to rely on Netflix way too much (and I do that way too often). For this reason, we are once again putting away the TV when we move. I know. I’m crazy. We have done this before, and it was so challenging but also so wonderful! We’ll keep Amazon Prime (because duh), and on really hard days, I can drag out the TV and plug it in or use my laptop and let the kids watch some stuff. But just having to do that extra step of setting it up makes it much less tempting. I think that change will be the hardest for Ruger, because he’s really become accustomed to watching TV when Sunley takes her morning nap (this is sometimes my only chance to get stuff done!)….and I’ve become accustomed to it, too! I want him to learn to PLAY for longer periods of time, and I want both Ruger and I to spend more time outside together. Unfortunately, I have very little self control with TV, and I know from when we did this before, that the only way for me to succeed in less TV is to not have one available all the time.

Because we don’t have enough going on right now, Ruger has decided he is (finally) ready to potty train! That has been pretty interesting. It’s going well, and I’m glad we waited until he was really ready. Parenting a boy, every aspect of it, is SO different than parenting my girls. It is so fun (and challenging) to see his “all-boy” personality show through in everything he does. I’ve been reading Bringing Up Boys by James Dobson, and that has been super helpful! I’d love to know what any of you boy mommas would recommend for reading! I just want to do a good job <3 He’s pretty awesome, and he deserves a good momma.

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Meredith's Heart :: HRHS, PA, MAPCAS

To sign yourself or a loved one up for a watercolor heart, click HERE

Today I’m finally sharing Meredith’s heart with you all. And I’ll try to keep this short and sweet, because how could I possibly do her story justice? Her sweet little heart managed to stay beating on earth for 20 days before finally going Home. God knew her momma’s path and mine would cross long before we did. 

Meredith’s grandmother and my mom have been friends for a little while, because they work out at the same fitness facility in Midland. When we got our diagnosis in December/January, Meredith’s grandmother was a big source of encouragement for my mom, and lifted up prayers for Sunley. Just months later, Libby (Meredith’s mom) would receive the same prenatal diagnosis of Hypoplastic Right Heart Syndrome — too rare to be a coincidence. Unfortunately, Meredith’s specific HRHS defects, Pulmonary Atresia and MAPCAS, ultimately took life from her. Though I would give almost anything to change her story, Libby has held tightly to her faith, and anyone who knows her KNOWS what an encouragement she is to everyone around her.

Before our babies were born, Libby and I were able to keep in touch and share Scriptures with each other. One thing Libby said to me (in regards to worrying about how to be there for my older children) was to “let God fill in the gaps where I can not be.” I have held that phrase so closely, and prayed it many, many times.

I was so honored to make this little interpretation of Meredith’s heart for Libby. MAPCAS is such a complicated heart defect, but I’d argue also one of the most beautiful. Some would refer to CHD babies’ hearts as broken, but my Momma eyes just don’t see it that way — There is nothing wrong with our babies; It is our world that’s messed up. And this world was just too broken to support Meredith’s perfect heart.

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I was so happy to meet Libby recently and introduce her to Sunley. We’ve walked different journeys in the CHD world, and I can’t speak for Libby, but I know that I feel forever connected to this sweet family and I can not wait to meet their Meredith in Heaven. I may not have seen her while she was here, but I think I’d recognize that heart anywhere.

Sunley is ONE

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) and Double Outlet Left Ventricle (DOLV), which is incredibly rare. What should have become a right ventricle is just a strip of tissue in her heart near her aortic valve.  Her prognosis has many unknowns, but we are very hopeful for her future. 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. We moved from Midland to Houston on March 7th, 2018 and Sunley was born the next month. Sunley spent her first 6 days in the NICU, went home (Houston 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. We had to stay in Houston until after her Glenn recovery. On January 7th, when Sunley was 8 months old and after exactly 10 months away from home, we returned to Midland with ALL 3 of our kids!

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ONE YEAR OLD. Birthdays are SO different around here now. Full of joy, but also full of very intense memories. Sunley is doing so well. She has beaten several colds now without any hospital assistance, including RSV back in January, and she is developmentally right on track. Our life is still in this weird transition process as we get ready to move again, but our family is all together, and that’s the most important thing! We had a VERY fun first birthday celebration for Sunley at the beginning of this month. I have to admit, I got a little emotional when we were singing to her, but LET THE RECORD SHOW that I did not cry. Feel free to applaud. The party was lemonade themed OF COURSE, because when life gives you lemons…

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We also have some great news: We bought 5 acres in Edmond, Oklahoma!! It is by far the most peaceful little piece of property we came across, and it makes me so happy that our offers on other houses were not accepted. The search was long, but it is complete. Unfortunately, the house on the property is condemned soooo…we are building a house! Which is insanely exciting, but also means we had to find yet another temporary home while we build (the city of Edmond doesn’t allow mobile homes otherwise we would just put one of those on the property). We were going to do a container home, even met with a builder and had floor plans, but ended up deciding that we wouldn’t save enough money or time to justify it. For me, this feels so right. The property is around the corner from some new friends in Edmond, and we even found a rental home just down the street! Another friend who works at OU Children’s Hospital came in with some fantastic pediatrician recommendations for us, so we just feel like God is helping everything fall into place so perfectly. Our official move date is July 16th, which also happens to be our 8th anniversary. I think it’s a pretty sweet way to spend our special day!

The kids are excited about the “big yard,” but also just so confused, which is understandable! Trying to explain to them that we are tearing down a house, building a house, and living in ANOTHER house while we build is a lot to take in and process for little kids. They’ve had fun watching me make the floor plans, and contributing their ideas, though! We stayed in an Air BnB during our last OK trip, and Ruger thought it was the house we had built. He walked in and said, “Good job building this kitchen, Momma!” We will meet with some contractors once we officially move up to Edmond, and we can’t wait to get started! 

In other news, Sunley had a check up in Houston last week. There’s no way to really describe what it’s like to go back to Houston. The memories there are as heavy as the buildings that hold them, and there’s just such a wide range of emotions that we feel being in those places again. Our memories are happy; Just, a heavy kind of happy. I’m really not sure how to explain it, except that withe every happy memory, there’s a little bit of a sting, too. Likewise, with every tough memory is another memory of victory and hope. We so enjoyed seeing a few of our favorite doctors and nurses. We just love all those people!! This was also the first time we saw Sunley really struggle with doctors. She never likes the pediatrician either, but the appointments at TCH were understandably much longer than a typical pedi visit, and she was absolutely terrified through most of it. The echo was especially difficult, and they were unable to see a couple of important things, like, AHEM, THE GLENN. Everything looked good, though, so that was wonderful to hear! Dr. Ayres did notice some mild aortic valve regurgitation, which we will watch. I remembered (of course, after our appointment) that Sunley’d had some very mild pulmonary valve regurgitation and some mitral valve issue at her last echo, and I forgot to ask about that. I’m assuming it is either stable or resolved, but I’ll ask about that next time. We tweaked Sunley’s meds very, very slightly, but this means we get to move to tablet form for her Enalapril! This is huge, because after coming home on I think 8 medications, we are now down to TWO half-tablets! This sounds like nothing, but it means I get to stop cleaning syringes and pre-filling them! Now, the only prep I have to do for meds is to cut tablets in half. Little milestone, BIG deal.

We also saw an ophthalmologist while we were there. Sunley has had a blocked tear duct since birth, and the guideline is usually to let it try and resolved itself until one year old. If it’s not resolved by then, usually the kid gets a low-risk tube surgery to fix the issue. I knew it was coming, but of course I just really don’t want Sunley having any extra procedures in addition to her already major ones. I was SO relieved when the doctor tried this new-sh technique, and I believe he fixed the problem! I can’t really explain it, but basically he pushed really hard in a certain way on her tear duct, and we both heard an audible “pop.” He said usually when you hear that pop, the tear duct has been cleared and you will no longer need surgery. That was done on Wednesday, and it has now been a full week with no blocked duct issues! Thank you Lord (and Dr Coats)! On Thursday, Sunley had her developmental outcomes exam, and she did great, considering she was scared of everyone in scrubs. I will never cease to be amazed that she came through this first year without any delays. It just totally blows my mind, and I credit those surprise 5 weeks at home before her PA Band for all of her development success — especially the eating journey.

Everyone still felt good enough about her echo that we are planning to go five months without one! In October, we will go back to TCH for a sedated echo so that we can get all the images we need. In the meantime, we’ll be practicing as best we can with playing doctor at home so we can avoid sedation eventually. I kept several medical items from when we were in the hospital to repurpose as toys. Things like a stethoscope that a nurse gave us, feeding tube syringes (I stuffed noisy things in there to shake), and a CLEAN urine sample cup (we used it for dish soap) to put small toys in. If there’s anything I can do to make the hospital seem more normal, I’m probably gonna do it….yes, even when it means playing with urine sample cups. And I try to make taking medicine and checking saturations fun. This is easy to do right now, because the big siblings both want a turn, too! Everyone is fascinated by the pulse ox.

The good check up in Houston really has us feeling ready for the next chapter of our lives in Oklahoma! Boomer Sooner ;)

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The Write With Light Project

I’m pretty excited to share something I’ve been working on for a while now. Actually, it’s something that’s been brewing in my spirit for years, long before I had ever even heard the term “heart mom,” and I think it’s pretty incredible to look back and see what God has always been preparing me for. I’m not sure how to summarize such a deeply seeded desire, but I will do my best!

Most people know that for the last many years, I have had my own traveling wedding photography business, and it has been my complete obsession. Photographing weddings, traveling, spending so many days making art while also meeting new people (HELLO, I’m an extrovert, let’s be friends), it has all fulfilled me in such a deep way. Photography has become, for me, not just a creative outlet, but a way to connect with should-be strangers on a very personal and deep level. Those connections make me love our Creator more and more every day, because when I get to know strangers, I get to know Him, and I get to know myself in a new way. I’ve always tried to bring with me to shoots and weddings an air of calm and positivity. I smile, I don’t get stressed out over conflict or bad weather, and I GENUINELY get so, so happy for these couples starting their lives together! I would consider myself an optimist to a fault—definitely too trusting at times, but WHO CARES because at least I’m smiling. My mom tells a story about this time we were in a grocery store when I was around 4 or 5: Apparently, this mean, old, grumpy man came over and chastised (threatened?) my little sister because she was crying loudly in the cart. After he walked away, my mom said, “Well he wasn’t very nice,” and I replied “Well maybe he was just having a bad day!”

I’ve always felt that way, as long as I can remember. When I was really young, probably about the same age I was in that story, I would pray for the devil to “turn nice,” so that we could all be happy and love each other. And I’m definitely not saying this to brag—this overly optimistic quality has bitten me in the butt many times over the years, and made me look pretty stupid from time to time. I won’t give examples, because well, it’s embarrassing, but suffice to say being too optimistic can sometimes be just as bad and isolating as being too pessimistic. Somewhere in the real-but-hopeful range is where you typically should land, yet I’m usually found way up in the pink and fluffy clouds of rose-tinted reality.

A phrase that has been my mantra for the past several years has been “Write With Light.” It’s been so very HUGE to me, that I even made a little logo for it. I write this phrase everywhere. Not only does this phrase literally mean photography (photo-light, graph-write), but it embodies what I always try to do in my everyday life — Writing with light to me looks like leaving the world a little brighter than how you found it. It looks like taking your story and forcing it to be full of good. God calls us to be a light to the world, and for me, this is how I do that; By being “too” optimistic in crappy circumstances (Maybe even so optimistic that people think I’m nuts).

All this to say, while I definitely can overdo it at times, I hope to leave behind an example for my kids (who doesn’t?) of how to keep going, how to stay bright and happy, when life isn’t perfect. No one has to look far to see that my life isn’t perfect. A year ago, I had two healthy kids with one on the way, getting ready to build my dream home in my hometown, while running a pretty successful photography business in which I got to travel all the time…And now, I’m not working, my family is healing from a traumatic year of hospitals and separations, we’re MOVING, definitely NOT building a dream house….I could go on. But honestly, truly, I LOVE my life. God has filled in the gaps, as He always does, and provided JOY. He has written light all over this roller coaster of a life we have, and no matter WHAT happens to my babies, to my husband, to me—He will always write light over all of it, and make it more beautiful than any photo I could ever hope to “graph.”

So for the past few years, I’ve been patient, but I’ve always known that I wanted to do something with this phrase. I wanted to do something for other people, to serve others somehow with “light.” I’ve been patiently (sometimes impatiently) waiting for God to guide me in how to move with this — But I’ve always hesitated because of this insecurity: WHAT WILL PEOPLE THINK OF ME? How can I possibly spread positivity to others when my life has been so easy? Then our family was blessed in the strangest way possible: with an absolutely gut-wrenching diagnosis. And we were thrust into the heart world. I’ve seen things now that I will never unsee, heard noises that I still sometimes hear at random times, and felt grief and pain and even sheer joy all at the same time. While we are still relatively new to the world of grief and sickness, and all of the super-high ups and super-low downs that come with that, I can’t ignore that I have a job to do in teaching my babies how to write with light in the darkest days. And I’ve been looking for a way to share that with others. While on a small scale, I’ve started what I call the “Write With Light Project.” I hope it will be the first of many opportunities I have to spread just a tiny bit of beauty in the world. What I’ve been doing is gathering diagnoses from different heart moms, and trying to illustrate the beauty in their specific child’s heart defect. I am definitely no watercolor artist, but I think there is something very sacred about the incredibly unique intricacies of these anatomies. I had no idea that the heart was so complex, and seriously GOD designed something amazing and super-complicated (slow clap for the LORD). For example, did you know that two kids, both with Hypoplastic Right Heart Syndrome, can have completely different heart anatomies and even different surgical plans? A series of defects can make up HRHS, and that series can vary from kid to kid. When I found out how unique each heart is (like freaking SNOWFLAKES, these hearts!) I just fell in love with the way God put them together, even though our world is sometimes too broken to support what was made. I have only done a handful of these watercolor hearts, but I would like to do 110 (since CHD is 1 in 110 babies), and I hope that by reaching out to 110 families in this public way, maybe we can raise some awareness for this wide range of afflictions. I don’t know where it will lead, but I do pray that it will give other families some hope. When I received Sunley’s diagnosis, it really didn’t seem like I would be allowed to ever be happy again. I would love to be able to reach the newbie heart moms by doing this little watercolor heart for them (obviously for free), and hopefully give them a little ray of joy in what will be some dark days for them.

So, I guess I’m asking, will you please join me in my Write With Light project? If you know someone who has a child with CHD, or has had a child pass away from CHD, support them by asking them about their baby’s unique anatomy—BE interested, and ask questions. And please get us in touch so I can complete this project of 110 perfectly beautiful, unique hearts! 

To join the Project, please visit www.WriteWithLightProject.com . It’s such a small idea, but I’m hoping that by taking the first tiny step, I can at least leave the CHD world a little brighter than when I came into it.

Below are three of the hearts that I’ve done. I have 4 more that I am currently working on, and I will post them when I’m finished!

Big Changes for my Little Texans

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) and Double Outlet Left Ventricle (DOLV), which is incredibly rare. What should have become a right ventricle is just a strip of tissue in her heart near her aortic valve.  Her prognosis has many unknowns, but we are very hopeful for her future. 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. We moved from Midland to Houston on March 7th, 2018 and Sunley was born the next month. Sunley spent her first 6 days in the NICU, went home (Houston 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. We had to stay in Houston until after her Glenn recovery. On January 7th, when Sunley was 8 months old and after exactly 10 months away from home, we returned to Midland with ALL 3 of our kids!

Over the past few weeks, we have really settled into our new normal. Our normal is similar to our old normal, but with a constant elephant in the room. It consists of all the normal three-kid things (School days, laundry, cleaning, more cleaning) while always side-eyeing the heart kid, trying to treat her the same as the older two while also keeping an eye out for red flags — labored breathing, cyanosis, runny nose or fever, a drop in energy or feeding. We’ve had a couple events — I guess, what you would call a “scare,” except they don’t really scare us anymore; We know the drill! I only check her saturations if she seems especially cyanotic, so it’s not like we have to constantly monitor her, which is a blessing. Sunley had one desat into the 60s, which usually means a hospital trip. She bounced up quickly on her own, though, and I checked her sats later in the evening and they were back up to mid-70s. She also had another cold, and we were worried about her breathing, but again, it ended up being nothing. Two weeks ago, she almost completely stopped eating solids, which was super strange. I was close to pulling the trigger and making a pediatrician appointment, but then she popped a tooth and began eating again, so I think it was all just due to teething. Each time, however, we’ve had issues with the medical care in Midland. We love our pediatrician and her NP here, but we have some issues with the overall availability of emergency and/or cardiac care here. In a nutshell, we’ve decided that we need to move. Not an easy decision, but once again, God has given our hearts an obvious answer. This decision has been made for quite some time, but we kept it close and only told the necessary people, up until Derek figured out his job situation, which was finally worked out recently.

We obviously considered moving to Houston (Everyone knows I LOOOOVE Houston), but eventually made the decision that we don’t want to raise our kids somewhere where we have no family around. Long story short, WE HAVE DECIDED TO MOVE TO EDMOND,OKLAHOMA! Derek and I both have lots of family there, and we will be closely located to OU Children’s Hospital should we ever have a cardiac emergency, or an illness which requires hospital support. Sunley will still have her major appointments and surgeries at Texas Children’s in Houston, but if she gets RSV again, the flu, or something that requires hospitalization, we may be able to stay home instead of flying to Houston for every tiny thing. I’ll feel a lot better knowing we have that option should we need it. Oh, how I will miss that Houston and Midland weather, though! And no, I’m not being sarcastic. I love HEAT and I hate cold. So pray for me from about October through April. If I remember correctly from my college days at OU, those are the unbearably yucky months of windchills and random wet weather. 

Talk about MIXED feelings. We are so excited to be moving back to Oklahoma after 8 years, but we are pretty much devastated to be leaving Midland. My parents (who kept our big kids for 4 months) and all of my grandparents live here, and our church family here is beyond amazing. We will deeply miss everyone, and I will especially miss living next door to my parents and watching my kids run over to G’s house at a moment’s notice (We’ve been living here since our house is still rented out, which we did to help pay for our Houston adventure). If it weren’t for this crazy last year, we never would have lived next door, and it’s been just so fun. We are planning to move sometime this summer, so Hadelyn can start school in Edmond in August. We’ve already been up to look at houses once, and we’ll be looking again this coming weekend.

Right now, the plan is for Derek to keep his job and work out a working-from-home/commuting to Midland schedule. His boss, Matt, was super understanding and supportive, and everyone is hopeful that it will work out. It will mean a lot of travel away from home (which is what brought us to Midland in the first place), so it’s a pretty big lifestyle change on top of the move itself. Derek and I have had many talks about that part of it all. The traveling will require a lot of energy and commitment from the both of us, as well as a huge dose of grace. It will require me to not become resentful toward the stay at home mom duties, and him to be “on” when he gets home from a long trip. Piece of cake, right? As sad as I am to leave Midland (understatement), I’m starting to feel excited about finally planting some roots for our family of five. Our kids have all been through so many changes, and I am SO sick of it. I love the adventures of moving, fresh starts, and home renovations, but I hate the stress it puts on little kids, so I’m hoping this is the last move for a long, long time.

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In other news, OUR HEART BUDDIES WENT HOME!!! Oliver is home-home in Arkansas, and Ivy is Houston-home, with plans to go home-home to Florida soon. Thank you all for the prayers for our friends. We both feel so much relief in knowing the joy they are all feeling. God has come through in beautiful ways for all of us! We are all planning a little reunion, hopefully sometime this fall. Sunley has met Ivy and Oliver separately, but we’ve never had ALL seven of our kids together, and it will be so sweet when it happens. 

Also, I can’t believe I’m saying this…Sunley Summit will be ONE this month! HOW IS THAT POSSIBLE?! I can’t even begin to relay all of the complicated emotions that it brings up, but I will just say this: Birthdays have changed in this house. They mean so many different things to us now, and we are so grateful for every day that our family is whole and together. SO GRATEFUL. I try my best to focus on the gratefulness, and not the things we have missed, or will miss, due to our life falling on a grenade. God is constantly sending me opportunities to dwell on gratefulness, and for that I am…GRATEFUL. You get the message.

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One Month HOME

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) and Double Outlet Left Ventricle (DOLV), which is incredibly rare. What should have become a right ventricle is just a strip of tissue in her heart near her aortic valve.  Her prognosis has many unknowns, but we are very hopeful for her future. 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. We moved from Midland to Houston on March 7th, 2018 and Sunley was born the next month. Sunley spent her first 6 days in the NICU, went home (Houston 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. We had to stay in Houston until after her Glenn recovery. On January 7th, when Sunley was 8 months old and after exactly 10 months away from home, we returned to Midland with ALL 3 of our kids!

hypoplastic right heart syndrome

I can’t believe we have been home for a month now! This time last year, we were in the middle of a very long diagnosis process, unsure of whether or not we should even pursue any treatment at all, and now we are home with ALL THREE of our beautiful babies. We spent January going back and forth to Houston a bit, but officially moved OUT of the Houston apartment on January 27th and made the 9 hour trek home. That last trip to Houston included an echo, Xray, and cardiology appointment which all went fantastic! Sunley’s saturations have a wide range, anywhere from 73-88, but usually land around 77. Her pulmonary valve has what Dr. Ayres called “trivial leakage,” but it isn’t anything to worry about right now. She said that it isn’t uncommon after a DKS. Sunley is gaining weight perfectly (almost 15 pounds now), which is so wonderful after such a long struggle in that area. Her appointment went so well, in fact, that she doesn’t need another check up until May! She is almost 15 pounds now, which is actually just about what her big brother (heart healthy) weighed at this age.

While we were in Houston this last time, our buddy Oliver CAME HOUSTON-HOME!! Having the two of them playing on the floor together is something we waited for for a long time, and it was so incredible for us. When we left before, I was very sad to realize that we wouldn’t be in Houston for his homecoming, but God allowed it. And it was such a wonderful “bonus” to be there! We have spent so many hours praying for these sweet babies, and it was just so precious to have them both together. As soon as beautiful Ivy goes home, I think we will feel like chapter one is finally complete <3 All 3 babies, and 4 bigs together is something I picture daily. We love our heart families big time. I don’t know how this year would have looked without these people and our really warped sense of humor. While our journeys have each been very different, the hurts are the same, the joys are the same, and the faith required in this CHD world is the same. I’ll stop rambling about my love for these people. Just so thankful. And thankful for all the prayers on our friends’ behalf as well <3

On the last night in Houston, I realized that I still hadn’t taken a rooftop photo of TCH that I had been eyeing all year. This was the sunset God sent me for the photo <3 Just another little way of Him telling me, “I see you.”

(If you are reading this on a phone, you’ll have to zoom in to see TCH!)

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Another exciting update is that Sunley Summit is CRAWLING! She is getting faster every day, and it’s so amazing to see her discovering her world in this new way. I find myself daily just staring at her, amazed that we didn’t end up with significant delays after all of her hospital time and procedures. I think a huge part of this is because we were able to go home and wait for her PA Banding Surgery. I regret not allowing the doctors to give her an NG tube that week (long story), but at the same time, if we had done an NG tube, we would not have gone home before that first surgery. Always pros and cons.

It finally feels real to not be in the hospital. New Years day marked 50 days that Sunley had been out of the hospital, and that was the longest stretch for her ever, until now. I’m officially not counting how many days it’s been out of the hospital, because we have no plans to go back for a very long time! We were so encouraged to overcome RSV at home, and Sunley is currently battling another bad cold, but handling it so well. Thank you all so much for your prayers. To say that we feel loved and supported is an understatement. 

February is CHD Awareness month, and I plan to participate in the coming years, but pretty much ignored it this year, as I am still trying to figure out life without Sunley’s CHD being the only thing of which I think or speak (definitely rearranged that sentence so that it wouldn’t end with a preposition. *Mic Drop*). Derek announced an update with one of our heart buddies, Ivy, at church on Sunday morning, and Hadelyn leaned over and said “What about me? I’m sick, too.” Without being too overly analytical, I’m sure that my two heart healthy kids have felt a little left out, what with their TWO ventricles and all, so it’s something I’m trying to balance. With everything still so fresh, I think it’s ok for us to ignore the CHD awareness for this year and just focus on our little family unit’s process of moving forward. That said, next February, you may want to brace yourselves for ALL the heart baby Facebook posts.

Everyone I’ve seen so far since being home has been so understanding and supportive. No one expects me to be 100% ok and happy all the time, and that’s been very encouraging for me. It’s a complicated thing having an experience like we had and then being shot right back into day to day life — with Derek leaving for work, me (not working now) making lunches, going to the grocery store, and cleaning ALL the live long day. We saw some pretty incredible things in Houston, and we also saw some pretty unforgettably horrible things, and to see for yourself the vast range of things that happen inside the walls of a children’s hospital is an incredible privilege and extremely humbling. It also makes doing the mundane, daily things of life kind of difficult at times. Of course I am overjoyed that I brought home my daughter. The drive home WITH a carseat in the back is the only way I wanted to come home, and we did just that. I am so, SO grateful that we are home and our lives are moving forward. But, I am also not done with the CHD journey. We still have the Fontan ahead of us, and even after that we will always be looking for improvements for Sunley’s health.

I have learned that actually you can feel exactly OPPOSITE emotions at the same time. I can feel so happy to have all 3 of my kids with me, and also feel lonely. I can feel so happy to be discharged from the hospital, and also miss getting to see and talk to other heart parents. I can feel relieved that Sunley has her left ventricle (the typically stronger of the two ventricles), and also nervous because her anatomy is so rare and the outcomes are more unknown. I can feel like Derek and I did a good job taking care of her, and also feel debilitatingly guilty for leaving my two bigs. I know I’m not the only one who has experienced such complicated emotions like this. Any sort of process involving grief probably feels similar.

I think we really isolate ourselves when we don’t allow others to grieve with us. 

I have heard one phrase OVER and over since we got the diagnosis a year ago: “I know this is nothing compared to what you’re going through, but…”

That phrase is such a stupid lie that we have ALL said, and one that I think we all find ourselves believing over and over again. After being diagnosed a year ago, I very quickly learned that I had a choice in my reaction every time someone offered advice. Of course, sometimes people are going to say the “wrong” thing. But I can tell you, the only time I felt hurt was when people said nothing. I can only speak for myself, but I think it is much better to say the wrong thing than to say nothing at all. I could list out several things to never say to a heart parent, but I think all that does is scare people away from saying anything at all, thus further isolating all of us with our own feelings. I think God equipped us all to empathize with each other, regardless of the specific situations we are in. No matter what we are going through, there is always someone who has it worse, and always someone who has it easier than us. It is a lie straight from the devil to think that no one can relate to what I’m going through. It’s a lie that has kept me so many times in the past from reaching out to friends who are hurting BIG. I learned quickly that I can learn from the experiences of other Christians, whether sick-baby related or not. Right after we were diagnosed, a friend started a sentence with “This is nothing compared to your situation, but when my dog died…” and I’ll admit that I started to close off. Reflecting on that conversation later, though, I realized that her actual advice was exactly what I needed to hear. She spoke about focusing her days on Scripture, filling her time with prayer, and finding a new normal without her companion. What a gift God has given us in each other, and we so often push it away. It is so easy when your whole world is changed to become extremely isolated in your grief, and not want to listen to what anyone has to say. It would be so easy to slip into a very bitter place, full of worry and guilt and fear, and that is just exactly what God doesn’t want for me. My daughter has an incurable heart defect. Do you know how angry that can make a person? I have nowhere for that anger to go, no one to blame, and no one who can change it. I think that’s why it’s tempting to ignore the stories and advice from other people. Because if I pretend like my problem is bigger than their problem, then at least I’m winning at something, right? At least it gives me a valid reason to be angry. It’s super evident, though, that actually my problem is not the worst problem in the world, and actually even if your biggest tragedy in life is that your dog died, we still have a lot in common, and you have wisdom to offer me from a very difficult experience of your own. Grief is grief, anger is anger, and all I will accomplish by winning the problem game is more loneliness. (And by the way, spending 10 months in and out of a hospital showed me quickly that things could be way worse, no matter where I was on the problem scale.) ALL of that rambling to say that, for me, there is no problem comparison, and the only wrong thing to say to grieving friends is nothing at all.

*Cue the insecurity of whether or not that came off the way I wanted it to. Ended with a preposition.

hypoplastic right heart syndrome

What the Lord Has Done in Me

*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) and Double Outlet Left Ventricle (DOLV), which is incredibly rare. What should have become a right ventricle is just a strip of tissue in her heart near her aortic valve.  Her prognosis has many unknowns, but we are very hopeful for her future. 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. We moved from Midland to Houston on March 7th, 2018 and Sunley was born the next month. Sunley spent her first 6 days in the NICU, went home (Houston 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. We had to stay in Houston until after her Glenn recovery. On January 7th, when Sunley was 8 months old and after exactly 10 months away from home, we returned to Midland with ALL 3 of our kids!

It is no coincidence that I haven’t updated the blog since our kids arrived in Houston. Life would be just completely insane with 3 healthy kids, let alone a heart kid, a move, a holiday trip, and two major illnesses.  It has been a year since we started this CHD journey of ours, and what. a. journey. And we are just getting started!

After spending Thanksgiving apart from our kids, we were all FINALLY reunited in Houston in early December. The five of us had not been together since Labor Day weekend. That was, of course, not the plan. Originally, we had planned to bring the kids to Houston every other weekend. Every single time we made those plans we had some type of issue — either Sunley went to the ER, or one of the kids was too sick to let them be around Sunley — and we kept having to postpone the trips. While that period of time was heart wrenching for us, the kids really did great with it all. They lived with my mom and dad and really thrived in the routine that was set up for them, so that helped our momma and daddy hearts. 

The biggest news is that we all were able to LEAVE Houston! We had planned on going to Midland the day after Christmas, but (long story) had to cancel that trip due to a scheduling issue for Sunley’s RSV shot, Synagis. This shot is only available for high risk babies like Sunley, who would be in a VERY dangerous spot if they contracted RSV. It is not a vaccine, so it doesn’t keep her from getting RSV, but would help her fight it if she caught the virus. I was told by one of the TCH doctors that RSV is one of the top killers for single ventricle babies after the Glenn. Needless to say, we did not feel comfortable leaving until she had that in her system. 

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A few days after her Synagis shot, we went to Oklahoma City for a short trip. Some of you may remember that we started our long diagnosis process just a few days before Christmas last year. We annually go to the New Year’s Meeting in Oklahoma, and it is always an incredibly encouraging experience. We haven’t missed a year since we met in 2006, and I look forward to it every year. The last night of the meeting is spent singing gorgeous a cappella hymns from memory, and it’s about the closest thing to heaven you’ll find on this side of reality. Last year, we attended with heavy hearts as we wondered what New Years would be the next time we were there. Would we even be able to go next year, or would we be in the hospital? Would our baby be delayed or brain damaged from her surgeries? Would we even have all three kids next year? The entirety of 2018 was spent focused on our kids and the impact that this diagnosis has had on our lives. I couldn’t help but have the goal of attending the meeting with our sweet heart warrior in our arms, and I was ecstatic that she was cleared to leave in time to attend. While her journey this year was very successful, we understandably had some low points. I will always remember long hours spent in the hospital trying desperately to console a baby in pain, while dealing with wires and tubes and following sternal precautions. It’s not easy trying to snuggle a baby in that position, and so sometimes I would just put an arm under her, my face by hers and sing, and picture us all together, singing at the New Year’s Meeting. It was really more to console me than for her, to make me feel like I was doing something to help. More often than not, the song I would sing is called “What the Lord Has Done in Me.” It has this gorgeous chorus that, for me, turned into a chant during some of our roughest days — some in the hospital, and some at the apartment missing my bigs and worrying about the future. This song became the anthem for my spirit over the last year. 

So fast forward to New Year’s at the meeting, which felt like an incredible victory lap for us. Last year we arrived in Oklahoma with a big belly and a scary diagnosis, and now we are here with an incredibly smiley, NOT delayed, gorgeous little baby, and our two big kids, all together again. I am already overwhelmed with thankfulness, but when we walked in to this auditorium of 900+ people it really hit me how MANY people care about my kids. We had complete strangers coming up to us just to tell us that they had been praying for her. Tons of young kids wanted to see her, several sweet friends that we haven’t seen in a year, and even family members that hadn’t met her until then. Of course, we were unbelievable germaphobes while we were there, only went to the last service of the meeting, and only let 3 or 4 family members hold her. Remember the a cappella singing I mentioned on the last night of the meeting? It’s always very old, very traditional hymns because it’s all from memory. Two friends of ours, Tara and Jeremy, printed out copies of “What the Lord Has Done in Me” and passed them out to all 900+ people there, and we sang it that night. I shouldn’t say “we.” The auditorium sang while Derek and I boo-hooed through the whole thing. At the top of the sheet music was a paragraph about how this was Sunley’s song all year, and I just about fell on the floor when I heard that chorus. It’s hard to explain to people because it’s just such a unique experience that we’ve had, but I truly think that was probably the happiest, most victorious, spiritually deepest moment of my life. Everything felt very full circle, and I felt so incredibly loved and humbled that so many people genuinely care about Sunley and our whole family. I know I will never have another experience like that, and I know I will close my eyes and relive that moment over and over for the rest of my life. The sheet music is now framed in my house (Thanks Mom!), and it will always hang proudly on my wall.

Because I haven’t cried enough, our church in Houston also very sneakily learned this song without us knowing, and sang it for us on what should have been our last Sunday in Houston…Unfortunately, we didn’t go to church that day because Sunley had a bad cough. They recorded it for us and just sent me the file today. I have no words. These people are just amazing.

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The thing about having a baby like Sunley is that heaven just feels closer now. I constantly feel like we are “almost there,” even though I actually have no idea how much longer we all have in this life. It’s a wonderful feeling to have. Since being removed from the world for so long, we have really slowed down our pace and focused on really simple things. I can honestly say that life is better now than when I thought all 3 of my babies were healthy. That’s crazy right? A year ago, I would have looked at a heart mom and felt sorry for her, but trust me when I say I do not need any pity. I’m a happier person, a better mom and wife, and most importantly I’m closer to God all because of some really terrible circumstances. We are definitely not done with Sunley’s heart journey, and I don’t know how or when it will end, but we are officially done with phase one, and it feels good!

After Oklahoma, we went back to Houston for a few days to start the packing for the move to Midland. We wanted to space out the trips a little bit to give us a break, but also to be back in Houston just in case Sunley caught anything at the meeting. We had our heart buddies over one last time on Saturday night for what I now call a “half-hearted breakfast feast,” and it felt bittersweet. We miss them so much, and we are all anxious for those two babies to go home. This year would have been VERY different without these other parents, and by different I mean about 1,000% less fun. The only down side to having our kids back with us (if there really was a down side) was that we couldn’t just get together with them anytime, and we have really missed that connection. God absolutely wanted our paths to cross, I have no doubt, and I’m so very happy that they did. We had a really great “Last Supper” with everyone, and I DIDN’T EVEN CRY. Later that evening, Sunley started coughing. 

A week before the meeting, I had come down with a horrible cold. I did my best to keep away from Sunley, but any mom understands, when you’re sick, you don’t really get to be sick because you’re a mom. Long story short, Sunley definitely caught it. We left for Midland on Monday January 7th, even though Sunley had a cough, and we hoped it wouldn’t turn into anything serious. Thursday, I finally took her to the pediatrician because it was getting worse and worse, and looked like we may need to head to the ER over the weekend. Turns out, Sunley has RSV — The one specific virus we were warned about. The pediatrician told me not to panic, and I laughed out loud and said, “You don’t understand; I don’t panic anymore. My brain is so far past panic, all I have left is a calm ‘Let’s see what happens’ shrug.”

Praise the Lord Sunley had the Synagis shot before we left Houston, because she has amazingly stayed out of the hospital throughout the virus. I can’t get people to understand how amazing that is. I don’t think I know a heart baby, especially single ventricle, who has managed to get through RSV without the help of a hospital visit. I actually don’t know many HEALTHY babies who can stay out of the hospital with RSV. We are pretty ecstatic that she managed to do it, and very thankful for the prayers and especially for the advice to get the RSV shot! You better believe we will never miss a dose of that liquid gold. Ruger and Derek now have the same bad cold that Sunley has, but those two have, like, WHOLE HEARTS, so they’re doing just fine :)

We have been in Midland now for one week, which has flown by already. Driving into Midland and seeing all the familiar places was a little tougher than we thought — I think it just was the first time we really had to look at and confront what we lost when we joined the CHD world. We are so happy that we get to move forward with some sort of new normal, but the emotions are complicated. It’s not exactly like returning home, because of course we aren’t in our house and we just aren’t the same people who left. It feels so good to be near family and our church family again, but we also really miss Houston, and mostly I think it’s just hard to move forward when there will always be so many unknowns for our future as a whole family. I think because SO much has changed in our lives, we both still feel a little misplaced, and it will take time to find a new groove yet again. I’ve driven by our old house a few times which just really tugs at my heart strings — I REALLY loved that house. But, duh, we have SO much to be grateful for, and that’s what we choose to focus on each day. All of 2019 will be a rebuilding year for us, and we are taking everything one step at a time!

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.

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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!

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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

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