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 :)

Settling into Oklahoma

What a WHIRLWIND of a couple months it has been! The move went so smoothly, and we are definitely getting settled, slowly but surely. We are all very homesick (especially Hadelyn), but we are also loving it here! I have so much to share, including an unbelievable fiasco with our first farming experience, so I plan on breaking it up into a few different posts.

First of all, thank you to every single contribution to Hadelyn’s lemonade stand! She ended up raising $639 for Texas Children’s Heart Center. I’ll make a post sometime about the specific ways it will be used, but in a nutshell, it will directly benefit Sunley and all of her half-hearted buddies. It means so much to me that so many people donated for Sunley, but even moreso that y’all supported Hadelyn and made her feel special by participating! This was such a positive service experience for her. For now, we’ve closed the lemonade stand, but we will definitely do more fundraising in the future, and I’ll be sure to share when we do. (Side note: Below is a photo of Midland’s current hero, Zack Owens, at the lemonade stand. He has a GoFundMe if you’re interested: Click Here)

Oklahoma has been good to us, but the first couple weeks did have its fair share of hiccups. We have only been here since July 14th, and have already endured an ER visit with 3 days of inpatient, an on-again/off-again stomach bug with the older two, several broken home items (A/C, water issues, etc), and many days with Derek out of town—during which we had the peak of the stomach bug, and also what we’ll refer to as “The Grand Milk and Poop Incident of 2019.” Despite the hiccups, we have also had lots of highlights.

Not surprisingly, we had TONS of help packing and unpacking from church family, both old (Midland) and new (Edmond). We also had so many people offering to bring us groceries or whatever we needed while the kids were sick. We’ve been given gift cards, free meals, and lots and lots of prayers, and we couldn’t be more thankful. I have some crazy-weird NOT coincidences to share, of course.

Years ago, my best friend, Candace Bohince, nannied for a sweet family in Norman. I’ve only met the mom once (at Candace’s wedding years ago), and didn’t know much about her. Of course it turns out that she works at OU Children’s because God. She gave Derek and I a very thorough tour of the hospital as soon as we got here (on our anniversary — exciting hospital-tour date!), as well as got us hooked up with a great pediatrician and cardiologist. We are not transferring care, so we will still do appointments and surgery with our team in Houston, but we had decided it would be smart to have a team at home that is familiar with her and will follow Sunley’s progress—ya know, just in case we ever needed to utilize their services at OU Children’s. Well, guess what? Just a couple weeks after the hospital tour, Sunley got herself a minor cold and had to be admitted for 3 days. It all went very smoothly, all because we were already hooked up and had our contacts at the hospital. Coincidence? I THINK NOT.

Ready for another crazy God-thing? We met our sweet, retired neighbors across the street from our 5 acre lot (where we will soon build a house). The wife is a retired NICU nurse, and the husband is a retired pediatric cardiology PA, both from OU Children’s. And just 4 houses or so down is a current OU NICU nurse. So ya know…God sees us.

I have lost count of these crazy God filled moments of coincidence, because they seem to happen all the time now. Or maybe they’ve ALWAYS happened, and I’ve only just now learned to look for them and appreciate them. That’s probably more likely.

I think so far, the best thing about being in Oklahoma has been being so close to some of the kids’ cousins. They are gonna have so much fun growing up together! We’ve already done several outings together and it’s just been so great. I wish we could have all of our friends in family in one place, but this is pretty close :)

Sunley is doing well, by the way! The hospital trip was tough emotionally for all of us. I just hate being reminded that she will never be completely well. And while I’m glad my big two are so open about their questions with us, sometimes it is very hard to find the right answers. More prayer, more scripture, and more focus on heaven — that seems to be the only way for us to survive our never-ending journey with CHD.

I will try and do another post sometime on the details of Sunley’s latest echo, which was pretty confusing. But for now, our little family is doing well, and trying to maintain a pretty chill pace.

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). 

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.

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

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.

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.

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.