Confessions of a Special Needs Mama

Today, I’m doing a guest blog for Mothering Rare and her “Confessions of a Special Needs Mama” series. Mothering alongside any sort of medical journey is a bittersweet mixture of deep loss and deep joy, and you absolutely cannot have one without the other — the loss makes the joy bigger, and the joy makes the loss deeper. And Jesus fills in the holes left in the in-between.

Confession: I am always bracing for the next emergency.

Sunley looks blue. I wonder if she’s grown more collaterals. Is that even a bad thing? The doctors said they could cauterize those off…but what if she needs them, and the doctors get rid of them, and then she never has the saturations she needs and it puts more pressure on her liver, and she ends up needing a transplant, and we have to move to Houston all over again?

Sunley is taking a really long nap. I wonder if she’s started her decline. And she’s been really snuggly this week so I wonder if that’s just her personality or if she’s getting tired and I’m missing her desats. Should I check her sats more often?

Sunley has a fever. Maybe I should sleep in here tonight and monitor her saturations, just in case. What if I put her to bed without monitoring her, and something happens? I would never forgive myself.

It won’t hurt as badly if I’m expecting it. If I plan for the worst, then I can just be pleasantly surprised when it doesn’t happen. If I get my hopes up, then I’ll just eventually become a disappointed fool.

Welcome to the “less fun portion” of my heart mom brain.

I know everyone’s medical journeys are different, and our family’s mostly invisible disease certainly keeps us on our toes. I feel like I need to clarify, I am not sad or scared all the time. Actually, I’m not sad or scared very often at all. Our life is really happy, just like anyone, and has moments of joy and also moments of pain…just like anyone. But there’s an asterisk that follows us around — rarely making itself fully known — but always there, ready to burst forth at any given opportunity.

I live in a constant state of what I call “go mode.” I am never unaware of how much medication or oxygen Sunley has available at home, and I keep a list taped to my pantry door for an overnight hospital bag. I don’t mention anything when I see Sunley turn blue or show some kind of symptom, because I don’t want her siblings and friends to always be so aware of it. But I see it. I see it every time. It’s still just as painful as the first time I saw her struggle to breathe, but the pain doesn’t hold as much control over me as it once did. 

I will never “accept” her illness, just like I won’t accept the brokenness of this whole world. We are not made to feel comfortable here, and I certainly don’t. Put it this way: I’ll get over her diagnosis when she is cured. In the meantime, I can’t help but feel like I need to brace myself for impact, should things not go well with Sunley’s heart. I don’t live in a constant state of fear because I don’t really have room for fear. But, I do avoid “counting on” things that a mother typically wouldn’t think twice about. I can’t really list those things out, because there are some things that heart moms can’t say out loud.

I know that a bad outcome with Sunley won’t hurt any less, regardless of whether or not I brace myself for it. I just don’t want to feel surprised if she ends up needing a transplant, or if her Fontan still doesn’t give her 90s saturations, or if she ends up getting COVID, or the flu, or a bad cold. I know hurt is hurt, and I know I can’t control Sunley’s outcomes, but I also think that I’ll stay in go mode just in case. 

If you are curious, you can read about Sunley’s full diagnosis here.

If you’d like to start at the beginning, start here.

Surgeries So Far

Part 1

Sunley has had 8 NG feeding tubes through her nose, countless IV's and even more unsuccessful IV placement attempts (enter Momma Bear), too many drugs to keep track of (I tried), tons of oxygen support including 3 intubations (not bad for a single ventricle heart kiddo!), 1 interventional Cath, 2 open heart surgeries, and I've actually lost count of her hospital admissions. I believe she's had 7 hospital admissions, and 3 oxygen interventions at home. She has been intervention free (I'm including just basic oxygen support) for a whole year since Christmas, and really seems to be thriving! We thought at the beginning of winter that we were starting to see the decline, but she has definitely bounced back to the point that we would be shocked to hear that it's time for the next surgery. We think her decline must have just been the onset of cold weather, or her body fighting some mild virus. I was seeing brief drops in her saturations  into the high 50s, but they were SO brief and never needed medical attention. Lately, she has been having oxygen saturations in the high 70s even up to mid 80s! 

Sunley will have another surgery, but we hope to put it off one more year, if her cardiologist thinks she can wait that long. She will have the Fontan procedure. This is the last planned open heart surgery for Sunley. Unfortunately, it doesn't actually fix anything; The Fontan adjusts her circulation yet again to force her heart to pump in a different way than ours, with just her single ventricle. This surgery will slowly wear out her liver, which is why it's hard to get too excited about it. There are no really great options for a single ventricle kid, but this is certainly better than the alternative...as long as it works as planned. 

Our hope is that Sunley will have a smooth Fontan surgery, a smooth recovery, and will finally get to experience oxygen saturations in the mid to high 90s! That would be such a beautiful number to see. We hope that her heart, as well as her other organs, will adjust to the new pressures created from the Fontan circulation. And in the meantime, her momma will be doing everything she can to help the research being done for Fontanners. More on that another time!

If the Fontan doesn't go as we hope, it is possible that Sunley could need a heart transplant, or a heart and liver transplant. But we seem to be very far from that outcome, and there is no reason to believe that a transplant will be her story. I always thought a transplant was a fix. I had no idea that your body always ends up rejecting the heart eventually, or that you had to take so many daily anti rejection meds. I also didn't realize how many people died without donating their organs. You can probably guess that I have a pretty strong opinion on that, especially as a believer who definitely won't be needing this body past her expiration date.

I digress, as always. Sunley's next surgery should give us SO many more years with our girl, which is the only part of the whole thing to which we can look forward! For now, we are enjoying all our days with our very spunky, very normal toddler.

Sunley's Current Diagnosis

Hypoplastic Right Heart Syndrome is the general diagnosis that Sunley has. It's an umbrella term, which can include several different combinations of heart defects, which means that kids with the "same" conditions can have very different cardiac anatomies, with very different surgery plans, and very different outcomes. Sunley was born with a few specific heart defects:

Transposed Greater Arteries - The aorta and pulmonary arteries usually cross. In a healthy heart, the PA rises out of the right ventricle and carries blood to the lungs, while the Aorta rises from the left ventricle, carrying blood to the rest of the body (arms, legs, etc). Sunley's Aorta and Pulmonary Arteries do not cross. While the heart is forming, which is around 5 weeks gestation (usually before mom even knows she's pregnant!), one of the first things that happens is the heart "folds" on itself. This is when the arteries cross, or in our case, don't cross. A few doctors suspect that if Sunley's arteries had fully crossed, the rest of her heart may have developed perfectly. And they almost did; they overlap, but just don't fully cross. I will always wonder if there was something environmental that caused this. Because heart defects happen so early on, there is VERY little data pointing to the underlying causes. 

Sunley also has hypoplasia (underdevelopment) of the right ventricle -- Actually, she has NO right ventricle at all. Both arteries feed out of and into the left ventricle, which is extremely rare. This is called Double Outlet Left Ventricle and Double Inlet Left Ventricle. There was some concern fetally that she had some issues with her mitral valve, which connects to her only ventricle, but that has remained mild enough to be left alone. 

All of this is "umbrella'ed" under the term Hypoplastic Right Heart Syndrome. When you Google that, the drawings look nothing like Sunley's heart because you can obviously have so many different combinations of defects that are still categorized as HRHS. 

We were very blessed that Sunley's arteries developed well -- there was no stenosis or atresia, which meant that she did not need the Norwood procedure at birth. Instead, Sunley's open heart surgeries included a PA Banding surgery (MUCH less invasive than the Norwood) and the Bi-Directional Glenn with a DKS procedure.

Part 2

Cloak of Invisibility

Growing up in church and in a Christian school setting, I always wondered to what big things God would call me. My school kept a pretty decent rotation of visiting Christian speakers, and they all had amazing stories of overcoming the "big sins" and choosing to follow Jesus. They had all gone to do great, big things, it seemed. I needed a superpower. I often wondered how I would ever develop a love for Jesus if I continued to follow the rules. I know that sounds silly, but as a kid, my faith seemed to be so quiet -- I remember feeling, even into my adult years, that my faith was dismissed simply because I had the same basic spiritual beliefs as my parents, and I never really rebelled against that. Surely, God would call me to something big. I loved Him and obeyed Him, after all.

I fell in love at 17, so naturally I started dreaming about what God would call us to do together. Maybe we would be missionaries, or maybe we'd adopt 10 special needs kids and save them from the perils of state facilities. Maybe we would start a hugely successful nonprofit together. Or maybe I would find some way to serve God through travel photography, because that was certainly different and fun.

I finally realized, at some point in between getting married at 21, and having 4 kids over the next 9 years, what all of these idealized callings had in common: they were very fitting for my Enneagram 7 personality, and they were things easily SEEN by others. Being "called" to do such big things would not be hard for me, like they surely are for some people. They required no unattainable superpower. I love uprooting and spontaneously going on a new adventure. I don't mind being the center of attention (holla, middle kids everywhere). I love giving any sort of speeches or presentations. And I love the idea of starting new businesses from scratch. None of those things are bad at all -- In fact, God gave me those gifts and they all work on service to Him when I use them appropriately. But, God is calling me to something that -- for my personality -- is very difficult. He does this with people doesn't He? Moses comes to mind first. (He was probably an Enneagram 9, but God made him act like an 8.) God has tasked me to the invisible, quiet work of motherhood. That is my big calling, at least for now. It requires a superpower for sure: a cloak of Invisibility — something I don't have without His help, and something that I wouldn't naturally choose for myself. He is not asking me to travel (hello, pandemic). He is not asking me to give speeches at Christian schools telling young kids how to find Jesus like I did. There are so many big things that I've concocted in my head that I would love to do for God and for others -- But if an act of service that I want to do would be a big disservice to my family, then today is not the season for it. Maybe there will be a season for me to accomplish some of the things I'd love to be doing now. But today is very clearly my season to look inside the walls of my house for His calling -- which is less like audible words, and more like a mom-gut feeling.

My job is to be a little bit invisible right now, and be creative with ideas for service -- Look for ways to serve with my kids instead of all by myself. Things like sending cards, care packages, and meals are the quiet ways we have been able to serve safely during the pandemic. Teaching my children the joy of writing letters, cleaning up after oneself, and anonymous service.

Through the stillness of quarantine, I have been given the gift of what I call my "mother worship time." Worship does not happen on a stage for me -- it happens when I choose laundry over watching a movie, cooking dinner for my family even though my back hurts, APOLOGIZING after I lose my temper (this happens way more than I'd like to admit). Most of the time, no one sees mother worship. You don't see a freshly cleaned floor after someone dumps legos on it. No one hears me talking to God in my head, asking for patience, thanking Him for what we've been given, or trying to memorize verses. I know my calling looks small to the world. But I'm not invisible to my Creator, and my identity is in Him; Not in the temporary worth giving by a worldly stage. I wish I could go back and tell my kid self that you don't need a big turning point moment to fall into a meaningful relationship with Jesus -- you just need time to find Him in the beauty of the mundane. I know I can't be the only one who feels this way. And I won't say "I see you," because maybe I don't. But we aren't home yet, and our invisible work here is not in vain.

Thin Places Have Laundry, Too

Though I haven’t updated here in quite a while, life has been moving full steam ahead. Each time I try to write, the emotional weight of all the things I’m currently juggling is too much to process — not to mention, there is always laundry to do. What a year it has been for all of us, right? I can’t speak for you, but I know our circle has definitely gotten a lot smaller this year — In some ways, we’ve returned to older ways of living, slower ways of living, and there is both joy and loss in that. We have lost family members and friends (some to COVID and some to other tragedies), but also added a new baby to our little brood. We are in the very middle of building a house that we designed ourselves, as well as our first year of homeschooling. We are preparing ourselves to possibly hear that Sunley needs surgery soon, and all of the above in a very turbulent society during a global pandemic that has somehow become politically charged. 

Maybe you’re like me and feel completely overwhelmed. But the beauty of this is that Jesus is always there to lift us out of our drowning, just as He did for Peter. And many days, I am definitely drowning. I start out eager, like Peter, and then quickly lose my footing. There’s been a lot of repenting, refocusing, and restarting in my days. And I think it’s ok for me to just sit in this space of an unknown future, as long as I keep Jesus there with me.

On that note, we are seeing just the very beginning stages of Sunley’s body starting to struggle again. I don’t want to say it out loud, as if saying it will somehow speed up the process, but there it is. I very much underestimated how gut-wrenching every little desaturation episode would be. The next surgery is coming — it will happen, sooner or later, and it was always the plan. But she’s not a baby anymore. Sunley is a RIDICULOUSLY spunky 2 year old who wrestles her brother, sings at the tops of her lungs, and tells tall tales about snakes biting her neck. She sprints to the door when I come home from a meeting with our builder (that is LITERALLY the only place I go), and comes out of her room at bedtime approximately 6,402 times a night, and tells us she will take a spanking instead of a nap, please. It was hard to send my baby to her surgeries, but something about this is harder. I don’t know if it’s just that she’s older, or that this is really the last “big” thing doctors can do for her heart — and that’s a reminder that this will never go away.

I’m rambling.

To summarize, I have a lot of big feelings about her impending “decline,” and I am not ready to be done with having a next-step plan. I fully expect the Fontan to go well. But if it doesn’t go absolutely perfectly, with her hitting 90s saturations, I’m not sure how I will process that, and I’m really not sure what that would mean, medically. 

For other heart moms reading this, her only current symptoms right now are increased cyanosis, and desaturations while walking or playing. It’s obviously impossible to get a read during movement, but I’ve caught her immediately afterwards as low as 58, but usually in the mid to high sixties. She always very quickly pops back up to her normal 78-81, so we aren’t using any oxygen with her. And for any not-heart moms reading that, President Trump had to go to the hospital when his oxygen was at 95. Sunley is wrestling her brother with 60s. That concept always amazes me. She isn’t showing any symptoms of being tired or not being able to keep up with her siblings, which has to be a good sign! Will you please plead with God alongside us to give us one more year before we have to do the Fontan? We are so hoping for that news in March at her next Houston check-up.\! We will gladly do whatever is best for her, but for her sake and ours, I would love to be able to wait until she is 4, Davie Lu is weaned, and I especially would love to wait until after the medical world has a better handle on this pandemic. Right now, most children’s hospitals are (understandably) not allowing siblings in as visitors. I know that sounds like a small thing, but the less separation we can have with our kids, the better. The separation trauma they experienced was real, and has had lasting consequences, and I’d like them to relive that as little as possible! I won’t go into a lot of detail about the Fontan, mostly because I am still learning about it, but it has a lot of drawbacks. Necessary, obviously, but it really beats on the liver while helping the heart. Another reason I’m not looking forward to it, though am also grateful for it!

All of that may seem very heavy and sound doom-y, but there’s something very beautiful about being allowed to see the brokenness of the world. My daughter is perfect. Allow me to reiterate as a non-biased observer: She is PERFECT. And this world has so much pure vileness. It’s not perfect enough to serve her heart as it was formed. There’s something about being in this world of CHD that makes the wholeness of God and His promises so much nearer and so much more glorious. I’ve described it before as forever living in a “thin place” — a place where the veil between heaven and earth is thin — so thin that one can sense it, and almost hear the songs in heaven. I am constantly thinking about the day when Jesus finally takes us all home. Won’t that be such a relief?

And when Satan tries to whisper fear, hatred, or bitterness, God’s promises are fulfilled by the Scripture that He has written on my heart. I have an answer for every lie with which Satan tries to distract me, and that answer is always wrapped up in a story of victory. 

I am struggling this year, and I know I’m not alone in that. I’ve had more just “emotionally bad days” this year than any other year I can recall. But I’m struggling with Jesus, and not without Him. He hurts when I hurt, and He uses my conscience to correct me when I take out my stress on the wrong enemy. I am walking through hard days, but they will not last forever. And I am determined to not miss out on these sweet, slow days with our little family — in many ways, tucked away from the world and all of the emptiness it has to offer. There is fullness in our home. And much, much laundry. Always laundry.

Good News

Apparently, our family doesn’t get diagnoses without some sort of roller coaster. Some of you have heard already that we have wonderful news to share! We traveled to Houston for a quick 20-hour trip to see our fetal cardiologist at Texas Children’s, after learning that our new little one was missing her atrial septum completely (the wall separating the upper two chambers). My MFM doctor in Oklahoma was also concerned about a possible hole in between her bottom two chambers. NEITHER of these possible defects were seen today. We could clearly see the atrial septum, and the ventricular wall seems to be completely intact. Thank you all for the prayers!! God has answered them this time exactly how we wanted. This baby’s heart appears to be 100% healthy! Furthermore, the rest of her body — brain, liver, fingers, toes, adorable nose, etc — It all looks completely normal. I was definitely more nervous about a new birth defect for me to learn about than any sort of heart defect. And right now, it looks like I get to expect all the normal baby things! What a blessing, and such a relief. We recreated the photo below from our fetal echo with Sunley. This year’s is the one with the mask ;)

There are always a lot of feelings being back in Houston, but we both definitely underestimated going to our old stomping grounds the day after Sunley’s birthday! For every traumatic memory we have there, we also have happy ones. We absolutely love TCH and it was so good to have a visit with such good news! I was up way too early this morning, and was able to do a lot of reading and praying, which helped prepare me for any sort of news. I was really not expecting the news we received, so for everyone who was praying for complete healing, thank you! I just couldn’t bring myself to pray for that. From our room, we had a gorgeous view of the hospital, a place that holds just SO much for us, and the trip was overall recharging and peaceful. We were RIDICULOUS cautious staying in a hotel room. We took lots of Clorox wipes, and also a roll of press n seal wrap and covered the counters with it. We felt ridiculous, but safe! Also, I have discovered that my elbows are perfectly micro-evolved for a pandemic — Very pointy and perfect for button-pushing! I had to go to the appointment alone, but was so pleasantly surprised to see Dr Ayres at the appointment — I had expected her to be FaceTiming in instead of in person. There is no one I’d rather be doing my fetal echo than that lady! She is amazing at her job, and also amazing at connecting with her patients.

We have been completely on pause for 10 days while we waited for this appointment. We had to wait a LOT longer for Sunley’s diagnosis, but 10 days was still too long. I have been in a very numb “funk” all week, because I didn’t want to grieve until it was final, didn’t want to be sad over something more minor than single ventricle, didn’t want to even think about having to deliver in Houston again (no offense TCH, but I’m done leaving my kids!), and didn’t want to get my hopes up for good news — all of it was just too much. Derek and I both just paused our emotions completely. Which is weirdly heavy.

We knew that the diagnosis was not final until we met with our fetal cardiologist, but after the roller coaster of Sunley’s diagnosis process, I knew better than to pray for complete healing. I just couldn’t bring myself to ask for that. With Sunley, I BEGGED God to take her heart condition away. I didn’t want to be a heart mom and do all the hard heart mom things. God did not answer my prayers with Sunley like I asked Him to. And it was SO. MUCH. Better than I could have imagined. Not like the asterisk-better where you find the good even though you’re actually sad all the time — Like, my life is actually way better than it ever has been. Which makes sense only if Jesus has done some major mountain-moving. I will always wish Sunley didn’t have to go through what she goes through, but I stopped asking for what I want a long time ago, because sometimes complete healing is not as sweet and deep as complete surrender. 

If I have learned anything in the past 2 years, it’s that you can feel completely conflicting emotions at the same time. I am SO happy this baby is healthy. I wish SO much God had answered our prayers for Sunley in this way. And I’m also so glad He didn’t listen to me. I wish Sunley wasn’t sick. And I also wouldn’t want to change anything even if I could. I’m grateful for all the prayers on our family’s behalf. And I’m also sick of being the one needing the prayers. I’ve learned (meh, I’m learnING) to just let those feelings come and go, and give them to God through prayer. Bitterness and anger are always an option, and I have to choose every day if I’m going to be angry about our life or if I’m going to focus on the bright spots (and there are a LOT of bright spots). 

This answered prayer today is a very bright spot. We are now expecting a healthy baby girl in August, and we can’t wait to meet her and tell her all about how God healed her heart! I have 4 perfect miracle babies, all miracles in their own way.

A couple people have asked me how the two doctors could have seen such different things. First of all, Jesus. But, secondly Dr Ayres said that the position this baby is in made the atrial septum difficult to see. That made me feel a little better too, because I know we didn’t see a wall at all at my last appointment, and it was so clearly there today. I even texted Derek during the scan and said “OK don’t get your hopes up, but I can see a white line that was NOT there before and it looks like an atrial septum.” Dr. Heart Mom acting like I know things. It took me a few hours to really un-process the news of this baby’s heart defect, and I feel a little bit of guilt for having a healthy baby when I know that a lot of women walking into that building today are not getting good news. But we are home now with our babies, and we are celebrating answered prayers BIG tonight! Cake and ice cream all around. Thank you Lord. He would have blessed us through either journey, but I’m so glad He chose this path for our littlest one. It felt pretty good getting one standard print-out of a heart instead of stacks upon stacks of drawings and explanations:

Good News and Bad News

I have sat down to journal or blog several times in the last few months, but I just haven’t been able to do it. To be honest, everything has just felt a little too “heavy,” even before the pandemic hit our neck of the woods. Flu season for our family was just FULL of sickness (thankfully, not the flu!). It seems like our family has been hit so, so hard over the last few months, but as always, there are also high points. 

Most of you know, in the month of March, seven members of our family and one friend all came down with COVID-19. Four of them were hospitalized, and our friend passed away (age 60s) along with my sweet Aunt Betty and my Grandpa (both in their 80s). So my Oma lost her sister and her husband just days apart. My dad was with Oma and Grandpa in Mississippi for a month during that outbreak, while my mom recovered from her second knee replacement surgery at home in Midland by herself. To put it mildly, this last month has been a train wreck for our family. And yet, God continued to show up in little moments. That’s all a very short summary of a very long story, full of ups and downs. To be honest, I have to keep that summary brief, because it is still so fresh and so heavy that it feels difficult to even think about. I miss my Grandpa. I’m so happy he was mine, and I can’t believe I won’t see him until it’s my turn to go. Again, our family has been held up by the people of God — their prayers, and His strength. In Grandpa’s honor, almost $3000 has already been raised for Texas Children’s Heart Center by friends and family, and the number is continuing to grow. Thursday, Grandpa had a beautiful burial in Mississippi with just a few people who were able to safely be there. Just hours after his funeral, I found out that our sweet little girl, expected to be here in August, has a heart defect.

I’m over 22 weeks along, but had postponed my 20 week ultrasound due to a fever Sunley had (yes, yet another sickness even in strict quarantine!). Due to all the COVID concerns, I was asked to come alone and wait in my car before my appointment, and the receptionist called me when my room was ready. So I sat there for just a little while BLASTING worship music while I waited. Sunley’s diagnosis process began with her 20 week ultrasound, so being back in that scenario, before I even walked into my appointment, brought up a lot of emotion. I was able to worship and pray and just be still before heading up for the appointment. The last song that came on the radio before the appointment was “The Blessing” by Elevation Worship, which is basically a very beautiful and powerful chant — perfect for bringing me peace. I just sang it over and over and over in my head while getting the ultrasound done. For me, I find it difficult to put together words for a prayer when I’m “in” the more intense moments — during surgeries, waiting for a doctor to speak, etc. Worship music or reciting Scripture to myself has been how I communicate in those short (ahem, LONG) moments. 

When the ultrasound tech got to the heart, I could tell there was a problem. I sat after she finished scanning for about 30 minutes waiting on the doctor (To be fair, I have no idea how long it was but it certainly felt long!), trying to convince myself I was overreacting. When the doctor came in, he beat around the bush, listing all the things that looked good with this little one, but I knew what was coming. His approach was compassionate, but I guess I’m just more of a “rip the band-aid off” kind of patient? 

In a nutshell, the most important bit of news is that this heart defect doesn’t seem NEARLY as severe as Sunley’s! In fact, from the little information we have, it seems to be very minor. Right now, it seems that baby #4 is missing her entire atrial septum (the wall between the upper two chambers). This would be called an ASD (Atrial Septal Defect). She possibly has a very small VSD (ventricular septal defect - a hole between the bottom two chambers), but that could close on its own, and it may not be there at all. We have an appointment at the end of this month with our cardiologist in Houston at Texas Children’s Hospital, and that’s when we will hopefully receive an official diagnosis. We’ll be able to get an echocardiogram and check all the other parts of the heart. I don’t know yet what this means for treatment, surgeries, long term health, or anything. But I do know we will be in good hands, and I know God will use it to bring blessings to us, if I can get out the way and let Him.

I had a 3% chance of having another heart baby, in case you were wondering. Honestly, this isn’t the news we wanted or expected, but I will take an ASD over a LOT of other birth defects any day. So while I’m sad and unsure about what will be happening over the next several months, I am so SO grateful to be dealing with something that I at least partially understand! I know what doctors I want, I know (kind of) what to expect, what medications do what, etc. We are very excited to be adding another little girl to the family, and we will take her any way she comes! Please pray for all of us, and especially for baby’s upcoming appointment. The timing of this news might actually be the most difficult part. I haven’t even really begun to grieve my Aunt Betty and Grandpa, and was really ready to get and give “healthy baby news” to the family. We are all hurting tremendously right now, but I remind myself that so is the rest of the world.

How wonderful that at least we are all fighting a common enemy. We are going through a massive shift in our culture and economy, but it’s not like I’m having to explain war or evil to my kids — We are all just fighting a broken world, full of disease. Even on the cloudiest days, the sun is always shining. And it won’t be cloudy forever :)

February 7th: Diagnosis

Today is February 7th, also known as Wear Red Day. This week, many heart families are trying to raise awareness for CHD, the most common birth defect, which affects 1% of all births in the US. Our family is in that lucky 1% — Actually, our family hit a much more rare kind of jackpot. When you look up Sunley’s specific anatomy, Google has no results. I don’t even have a statistic for how rare her heart is. But her perfect little heart is exactly what my heart needed. Don’t get me wrong — I would heal my sweet baby girl if I could. But since I can not, I will look for any silver lining that comes with such a horrible diagnosis.

Sunley’s diagnosis is classified as Hypoplastic Right Heart Syndrome (meaning a small right ventricle), but she actually has no right ventricle at all. Sunley has Transposition of the Greater Arteries, Double Inlet Left Ventricle, and Double Outlet Left Ventricle. (To be fair, some doctors can’t even fully agree on her diagnosis because her heart anatomy is so intricately complicated.) One of her doctors said that her heart anatomy is something you typically only see once in a career. While every course of treatment for each baby is different (two kids can have the same diagnosis but need different treatments), Sunley’s treatment basically follows the treatment plan for HLHS kiddos. This means that she has already had 2 open heart surgeries (a PA Banding and a Glenn with a DKS), 1 Cath, and numerous hospital stays, pokes, feeding tubes, all of it. We are currently waiting for her next surgery, the Fontan procedure. It’s a weird space to be in — waiting for your baby’s heart to begin failing…again. We loosely expect that next surgery to be in 2021, but each appointment holds the possibility of unexpected news, so we only pencil in plans. My understanding of her diagnosis is still growing — it is incredibly complicated, and I often struggle to understand the big picture of it — But, right now my understanding is that you want to try and hit the sweet spot with the timing of the Fontan. While it should, if successful, give her many years, the Fontan circulation is extremely hard on the liver. Often (often? Sometimes? Always? Still learning), if a Fontan patient lives to adulthood, they can experience major problems with their heart and liver. It is a big possibility that Sunley will someday need a heart, liver, or heart AND liver transplant. We hope that will not be the case. We hope that she will outlive us. But whatever happens, we walk into it confidently with the joy of the Lord and the hope of Heaven always present. These surgeries do not cure anything; They put a bandaid over an open wound that will never heal. But I will gladly take every moment I have while our family is whole, and I pray I will never have to experience some of the things I was initially told to expect.

The journey of being Sunley’s mom (while parenting my other sweet babies) has been incredibly wonderful for me. But I will tell you that the worst, most excruciating part, by far, was the diagnosis process. You can read about that here, but let’s just say I was thrown into the medical world— its politics, its good and bad sides— all at once and it was just totally overwhelming. Throughout every step, God provided exactly what we needed, mostly in the form of encouraging family members, friends, and complete strangers (ahem, angels) who let us know they were walking with us. Preparing for her birth was also a weird space to live in, much like waiting for the Fontan now — Just lots of waiting, wondering, and praying. There were so many doctors coming in and out when she was born — probably 15-20. She had her first little procedure in the room, and I was happy to be there for it. Speaking up in front of doctors (something I’ve really had to work at) started immediately, as I had to ask to hold her while they prepared their equipment. Actually, now that I think about it, I think Derek asked and I was too shy. I don’t have too much of a problem with asking questions nowadays ;)

Photos Below by Lori Faber, who flew all the way to Houston just to take these photos for me. Forever grateful.

Here is my original two-part blog post from when we first received her diagnosis — there are a few mistakes, as I was still learning about it all, but you get the idea.

Thank you for your continued prayers. If you wear red today, thank you from the bottom of my two-ventricle heart!

Big News for 2020

This post will be short and sweet. We are just absolutely overjoyed to announce that we are expecting our fourth child! I’ve known for a few weeks, and just can’t keep it a secret any longer. We wanted to wait until our visit to Midland this last week to tell family, and if you’ve run into me since then, I have most likely not-so-subtly worked it into conversation. I’m due in mid August, right around my 31st birthday. The kids are very excited, and we can’t wait to see the adventures God has for this special one. 

Statistically, we only have a 3% chance of having another heart baby—But, I mean, we only had a 1% chance with Sunley so statistics have pretty much been ruined for us! I wouldn’t say I’m worried about health issues, but I would describe myself as cautiously excited. My eyes have been opened to not only the heart world, but the incredible amount of things that can happen to a baby. Fortunately, my eyes have also been opened to the incredible power of prayer, the encouragement of the church, and the immeasurable work that God can do with any child, healthy or not. We are expecting a completely healthy baby, but we will gladly accept any extra adventures that may come. This family can do hard things, thanks to all of your prayers and your words of encouragement. We were hoping for a fourth baby AFTER Sunley’s next surgery, but I’m so happy with the timing that God had for this child. Sunley will be almost 2 and a half, and hopefully won’t be needing surgery for at least another year. Whatever the timing and whatever the road we are given, we are ready to go with happy hearts. Thank you in advance for your prayers over this new little life!

18 month old Check up in Houston

*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, along with Transposed Greater Arteries (TGA). 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! We stayed there for 6 months before moving AGAIN to Edmond, Oklahoma. Sunley was hospitalized for 3 days due to a minor virus in August of 2019 at OU Children’s, but continues to receiver her “major care” and check ups in Houston at TCH.

I barely ever have time to sit down and write, so I really appreciate those of you who care enough to stay updated on this blog! It means the world to us that everyone still prays for Sunley and our family.

A few weeks ago, Sunley had her “big” check up in Houston at TCH. We left the big kids here in OK with Derek’s mom, which made the trip way easier! The big kids were so sweet about it — they really take care of their little sister, and Hadelyn steps up when things are tough. She even packed a book for Sunley, and gave Sunley her favorite stuffy (Boo the Dog).

We decided last minute to switch from a sedated echo to a non-sedated echo. It was so hard keeping her awake until her afternoon appointment (especially since it ran two hours late), but was definitely worth not having to sedate her. They got all the images they needed this time, which was reassuring. Everything is remaining stable, which is exactly what we wanted to hear, and she isn’t scheduled for another check up until April. The only new development was that her heart has grown a collateral vessel —basically, a new vein has popped off of her heart. It isn’t causing any problems right now, but we will continue to watch it. If it does end up causing issues with her saturations, we could possibly coil it off in a Cath procedure. This could end up leading to an early Fontan, but we have no reason to worry about it right now. She also had some “trivial” aortic valve regurgitation, which didn’t sound uncommon for someone who’s had a DKS. So overall, Sunley’s checkup was smooth — thank you Lord! An added bonus was that Sunley finally let Dr Ayres hold her. Such a small thing, but it made us happy to see Sunley happy at her check up. Everyone at TCH knows how much we LOVE that lady.

We also told the scheduling team that we’ve decided to get echos done on our older kids in April. (Yes, told.) Last year, I asked about doing that, and was told it really isn’t necessary. But I’ve learned now to follow my gut. Doctors recommend fetal echoes for any future pregnancies, so it’s always bothered me that they don’t recommend screenings for older siblings. I’ve met so many other parents now that were told the same, insisted on screenings, and found issues, so I’m trying not to care if anyone thinks I’m overreacting. I’ll be surprised if we find anything, and I’m actually not really worried about it at all; It just seems like a logical precaution to me. Honestly, I wish I didn’t have to be this insistent, and I don’t like looking like a worry wart, but it is what it is. We’ll get it over with, and then we won’t have to think about it again. After 2 weeks of phone calls back and forth, we got all 3 appointments scheduled in April. TCH is definitely the best place to go for anything cardiac, but OH MYLANTA the roller coaster of scheduling appointments. Sheesh. All the heart mommas say AMEN.

While we were at TCH,  we ran into some familiar faces, and we also got to hand deliver Hadelyn’s ziplock baggie of Lemonade Stand money (very official). Sunley also had a very thorough evaluation with the Developmental Outcomes program that went great. No therapy for this trooper!

About a week or two after we got home, and while Derek was out of town (of course), Sunley had a very random desaturation episode in the 60s. Again, the big kids jumped into go mode and really helped it all go smoothly. I was actually in the process of putting Sunley to bed when I noticed she looked a little dusky. That happens often, but almost never are her saturations actually low. Fortunately, OU Childrens had sent oxygen home with us after her hospitalization here, so I was able to just put her on oxygen at home until she got back to her normal high 70s, which was only a few hours. She had gotten a vaccination that morning, so my guess is that she was feeling icky from the vaccine and just needed a little boost. None of my kids have ever had more than a fever after a vaccine, but with Sunley, even just a minor issue can require some help. It really was no biggie since we didn’t have to go to the hospital, and she weaned off of oxygen after just a few hours. I am SO thankful we avoided the hospital, especially since Derek was out of town! It’s crazy to me that Sunley stayed off of oxygen when she had RSV (thank you Synagis), but then these two MINOR illnesses required it. Just a reminder to always follow my gut when it comes to checking her oxygen levels. She currently is fighting another pretty yucky cold (along with her older brother), but her saturations are staying in the high 70s, and even up to 82, so she’s doing fine without any oxygen. 

I feel like we have settled well into heart family life, whatever that is. I don’t feel like we really worry about Sunley’s future…It’s more like we just have a heightened awareness at all times. But still peace. Always peace. I would change everything for her if I could, and I will always feel some level of grief that she is not healthy. BUT God has given us joy in trials, and I definitely wouldn’t want to ever change that. The light always always overcomes the darkness :)