Huck’s Heart | April Update Part 2 

In honor of making it to 34 weeks, here’s part 2 of this crazy journey so far! 

Read Part 1 here 

I started calling on Monday of the following week, asking for the status of our referral. We were told it could take 5-10 days for approval but if we called in, they could possibly expedite the process. Again, trying to shorten the insanity of what we went through, I made phone call after phone call; one to the OB’s office, then another to our coordinator with Texas Children’s to relay information and ask questions, then another to the insurance company, rinse and repeat, until we finally got approval for all our visits the afternoon before our first appointments with Texas Children’s. Talk about cutting it close! 

On Friday, April 7, I was up at 3 am partially because I couldn’t sleep and partially because we had to leave super early to be in Houston for our 8 am appointment and we weren’t really sure about traffic. It was a whirlwind day, with 3 different appointments, each lasting approximately 2 hours. We were basically starting from scratch and letting them build the information from the last 8 months and Huck’s heart in their own systems and records. 

First we met with the MFM (maternal fetal medicine) ultrasound department. We had a full anatomy scan, which at 33 weeks is kind of strange because he’s so big at this point. They measured all of his body the best they could, let us know he was measuring 5 lbs 4 oz, in the 68th percentile I believe, and confirmed for like the 15th time that he is indeed a boy. 🙂 Oh and that his head and belly were measuring in the 90 something percentile. The words “fat tummy” were used lol. He’s a full pound bigger than Whitlee at this point. 

After that we met with the Maternal Fetal Medicine doctor that we will see until Huck is born and who we thought would be delivering him (I’ll get to that part). She went through my entire medical history, looked at my blood sugars, talked about preeclampsia and symptoms to keep an eye out for, plan for monitoring going forward, the delivery process, what to expect the next 6-7 weeks, gave me an updated tDap vaccine for this pregnancy, and did a cervical check. And then before we signed all of the consent forms for birth and treatment, she asked “do you want another c section, or would you like a vbac?” She was so casual about it, like asking if I wanted water or tea. I asked what she thought and she said that as long as I’m stable with my gestational diabetes and blood pressure, she has absolutely no problem letting me go into labor on my own, when Huck is ready, and letting me do a trial of labor after cesarean; that they do tons of them there. She said it would be easier and faster recovery for me, as well as beneficial for Huck to travel through the birth canal and help squeeze extra fluid from his lungs, especially in this case. She reminded me I’ll need the ability to go see him in the nicu and a c section recovery might hinder the speed in which I’m able to go there, plus having a 2 year old to handle. There were discussions about the risks involved and reasons why we might still end up having a c section but for now, we agreed to keep a close eye on things and proceed towards a vaginal birth. She may or may not be the actual one to deliver him though since it will be spontaneous. 

I’m so nervous and excited for that part, but seriously so at peace that I know she fully supports the idea and that if she moves toward a c section, its because I truly need another c section. She did confirm during my cervical check that I was not dilated yet (good thing since we’re not quite ready yet) but that he was low and she could feel his head, which at this point was excellent because this is what would begin to soften and efface the cervix when it was time. She would prefer I spontaneously go into labor on my own but was open to inducing if we should reach that point. 

The last appointment of the day was for the echo and to see the cardiologist. They did a full echo, lasting about 45 minutes. Nolan and I kept both drifting off during because she was super quiet. She said that while she did the scan, the cardiologist was watching from a different room. I noticed she went back over some of the same areas over and over, very very slowly. I remember wondering if the cardiologist was asking her for second and third looks at some things. Afterwards she left and the cardiologist came in. She said that Huck has a very complicated little heart, but that it is not hypoplastic left heart syndrome. She did a few scans of her own and then had us sit down for a consultation where she explained the complex anatomy of his heart and how we would proceed. 

She explained that he does actually have two ventricles – one on one side that is large and fully functional and another that is very small, sort of like a pocket ventricle. He also has both of the main arteries that are very important for function of the heart. Then she told us that the large ventricle, she believes is the left ventricle, making him have a ventricular inversion. (This explains why our first cardiologist was hesitant to commit to saying right or left.) This also means that the aorta is attached to the left ventricle and the pulmonary artery is attached to the right ventricle, which is called Transposition of the Great Arteries or TGA. He also has Tricuspid Artresia, meaning his tricuspid valve never developed, and he has a ventricular septal defect, a large hole between the two ventricles, making it look like one ventricle. I know this is super confusing and it still is to us too but this picture explains it pretty well. 

This diagram shows a “hypoplastic” right ventricle because the term hypoplastic means “underdeveloped” and he will still be considered (and treated like) a single ventricle baby. But in our case, if she is correct about the complex anatomy of his heart, he has the stronger of the two ventricles. The left is usually considered the “work horse” of the heart, having stronger muscle walls and capable of regulating blood pressure better than the right. 

So what does all of this mean? It means that he will for sure have open heart surgery at least twice in his life. But for now, pending anatomical confirmation at birth, he is clear of the Norwood procedure that happens almost immediately after birth. Reminder, the Norwood is the most complicated and severe of the surgeries and has the highest mortality rates. They said he will go to the NICU somewhat immediately following birth. I say somewhat because as long as he’s stable when he comes out, they will do his initial assessments in the room with us and that he would most likely be with us for around 30ish minutes before leaving for the NICU. Some of this has been a little strange to explain to people because the natural reaction is “we’ll won’t he be in critical condition when he’s born? I mean he’s missing part of his heart… and some of its backwards… and I just don’t understand.” And the best answer I can give that we’ve had to learn over time is that there are some unique features to a baby’s heart while they’re in utero, like some ducts and passage ways, that allow blood to freely move about the heart in a way that is actually “okay” for them at first. It’s not a perfectly functioning heart but it gets the job done. Those things remain open for quite a while giving care providers plenty of time to do whatever needs to be done. It’s all pretty miraculous. 

Where we’re at now is that my care has officially been transferred to Texas Children’s Hospital. I have appointments there once a week, but they’re usually 3-6 appointments crammed into one day since we live 2+ hours away. We won’t know much more about his heart now until he’s born and they’ll able to do a full echo on him to confirm the anatomy of his heart but if everything matches what they believe currently to be true, he may be able to wait a few months before his first surgery, making him much more stable and tolerant of the procedure. We will be temporarily relocating to Houston in a couple of weeks per the recommendation of our team of doctors at TCH and we’ll remain there until Huck decides to make his appearance. We’re not quite sure how long we will be there after he’s born but our prayer is that everything the doctors believe right now holds true and we know they’ll get us home as soon as it’s medically safe for him to do so. We definitely believe he’s in the best place possible now! 

Again, thank you so much to everyone for continued thoughts, prayers, and donations. There have been so many local fundraisers and it makes me cry every time I think about how everyone has helped. We can’t even begin to put into words how thankful we are for everyone’s continued generosity! 

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May is Preeclampsia Awareness Month

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As some of you may know, I developed preeclampsia somewhere in the neighborhood of 33-34 weeks with Whitlee and we were required to delivery early, via c-section at 34 weeks 2 days. (Read Whitlee’s birth story here) Since May is Preeclampsia awareness month, I wanted to make a post about the disease itself and how it affected our pregnancy, as well as how it will affect any future pregnancies.

In a nutshell, preeclampsia is a condition that occurs only during pregnancy and the postpartum period. Researchers do not yet know the exact cause, but it has been associated with reduced blood flow to the placenta. The placenta can react violently to this situation, and will begin dumping chemical proteins into your system, causing high blood pressure, presence of protein in the urine, swelling, sudden weight gain, headaches, and changes in vision. Severe preeclampsia can be life threatening to both mother and baby and currently the only treatment is delivery. Occasionally the symptoms can be managed to get the baby to a safer gestational point; in our case 34 weeks.

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Common Misconceptions About Preeclampsia

Bed rest can delay the onset of preeclampsia, or make your case progress more slowly.

False. Trials have shown no strong evidence of bed rest benefit. Actually, according to the American College of Obstetrics and Gynecologists, “For women with gestational hypertension or preeclampsia without severe features, it is suggested that strict bed rest *not* be prescribed.”

Only overweight women get preeclampsia.

False, however obesity and excessive weight gain during pregnancy does raise your individual risk, as well as sudden weight gain being a primary symptom. I gained about 12 lbs in two weeks at the end with Whitlee, completely not normal.

If you had preeclampsia once, you’ll always have it with subsequent pregnancies.

Preeclampsia happens mostly in first pregnancies, but not only. If you’ve had it once, you are considered high risk to get it again, but additional factors play into your overall risk.

  • Side note – I recently realized that there is a shaky understanding of our pregnancy and birth with Whitlee. There has been a lot of second hand information, even third hand information, and most people simply know that we had a high risk pregnancy for whatever reason, she was delivered early (most don’t even know how early and assume the worst), and that she was required to stay in the NICU for a while (additionally, most don’t know for how long). They also assume that Whitlee will subsequently be an only child. While I did experience preeclampsia and she was delivered 6 weeks early, we were blessed that her NICU stay was pretty uneventful and comparatively short (20 days). We have discussed future pregnancies at length with our doctor and he has absolutely encouraged us to have more children, with confidence that my own individual risk is considerably lower than it was the first time.

Pregnant women shouldn’t be informed about the risk of getting preeclampsia, because it will just stress them out.

Pregnant women deserve knowledge of and resources related to this condition. Knowledge is power.

Preeclampsia is rare.

Try “as common as breast cancer,” even if you’ve never heard of preeclampsia. Worldwide, preeclampsia strikes as many as one in every 12 pregnancies (or 8%).

Tips for pregnant moms or if you’re thinking of having a baby in regard to preeclampsia:

Find a doctor that you trust. Our new doctor is fully aware of the situation at hand, and I feel like he’ll be quick to get a handle on anything that comes up. He’s also very communicative and explains things so that you understand them really well.

Know the symptoms and be aware of the changes in your own body. You can read more about the disease itself here and here. My own personal symptoms were sudden swelling in my feet and ankles, that later spread up my legs, and in my face. I also experienced some dizziness and nausea at a point when my blood pressure spiked, and sudden weight gain. I really just felt off there at the end. You should alert your doctor of anything you think might not be normal.

Know your own current and future risk factors and discuss them with your provider. Proper prenatal care is essential to diagnose and manage preeclampsia.

Happy May, guys! I can’t believe 2016 is almost halfway over. Whitlee’s 18 month blog post coming soon! Here’s an adorable picture from Whitlee’s NICU stay a year and a half ago!

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World Prematurity Day | November 17

   
November 17 is world prematurity day and the whole month of November is prematurity awareness month. Did you know that 1 in 10 babies are born premature? I didn’t. While daydreaming about being a mother, I never fathomed my pregnancy would end at 34 weeks. Being the mom of a premature baby is h a r d. Leaving that hospital at discharge without my baby was one of the hardest things I’ve ever done. It just felt sad and depressing and wrong. We had to wait nearly another month to get that momentous day of bringing home our baby. Visiting her in the NICU was both challenging and rewarding. Challenging for obvious reasons, but so rewarding to have every little milestone she accomplished celebrated with such joy. Nurses and other preemie parents cheer you on for the smallest of smalls but to you they are so big. 

  

I’m so proud of the smart, funny, beautiful child Whitlee has become. She keeps us on our toes but we are reminded every day, and especially today, how insanely blessed we are. Momma and Daddy love you, baby girl. You make our world go round. 

  
Read the beginning of our NICU journey here

NICU | Day 20

Whitlee’s 20th day in the NICU was her last! I called today at lunch to see about her getting to leave and they said to bring Nolan when I come so that means they were sending her home!

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So after 20 long days of driving back and forth to see her, our sweet girl is finally home with us. We are thrilled and so in love with her! Happy graduation day, Whitlee!!

NICU | Day 19

Whitlee’s 19th day was another good one. I’d been telling Nolan that he needed to go with me during the day if he could because she’s so awake after she eats at 2 and she’s so fun to look at and talk to. So he was able to go today and she was perfect! She breastfed wonderfully then stayed awake just long enough to be adorable then went back to sleep.

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She has also continued to eat everything by mouth and they told us to bring her car seat when we came back that evening for her car seat test! And I just got word that she passed that perfectly. She’s actually big enough now that the newborn insert that came with our carseat fits her great even though she’s not quite 5 lbs yet. Just an FYI, they make all preemie babies that have been on oxygen sit in their car seat for 90 minutes and make sure that A. they fit safely, and B. they don’t have any bradycardia or apnea spells, basically make sure they’re not going to get in their car seat to go home and freak out and stop breathing. But she passed, so that’s great news! That means as soon as her doctor gets back on Monday, he has to get caught back up on all of his patients, but I’m hoping like crazy she gets to go home. It should either be Monday or Tuesday! We’ve got lots of nurses and even my OB backing us saying she’s for sure ready to go. Tomorrow could be our big day! 🙂

NICU | Day 18

Day 18 of Whitlee’s stay in the NICU fell on 12-13-14. We basically knew early on there was a slim chance on me making it to my due date, so 12-13-14 was the day I was actually hoping to have her, as I would have been a day short of 37 weeks. Turns out 12-13-14 ended up being a significant day anyway. At 2pm, it marked 24 hours that our sweet girl had eaten everything by mouth! Her doctor won’t be back until Monday and the replacement doctor will not be discharging her, but she has finally met the last milestone! Now she just needs to keep up the eating so they don’t have any reason to put her tube back in, keep her weight up with all this extra work she’s doing (she’s 4lbs 11oz now!), and pass her car seat test. We are so excited and so proud! I hope we are home together as a family very soon!

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NICU | Day 17

Today was another good day! Whitlee is doing really well in her open bassinet and starting to take more and more of her feedings. When I got there for my daytime visit, in 24 hours she’d taken all but her 11 pm and 11 am feedings by mouth, so that was a great improvement! She breastfed great for me and then we just rocked for a while like usual. She’s always wide awake this time of the time day unless we’re rocking and I’m holding her. As soon as I go to put her back in the crib, she’s awake. This is becoming her normal schedule though, she’s done it three days in a row. So I got her settled, even though she was awake, and let the nurse know she was back in her crib and awake, but seemed content and would probably eat good for her at 5 if she stayed awake.

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Here’s the good part – when we went back for the evening, our favorite night nurse, Wendy, was back. She said she’d gotten there early and picked her favorite babies for the next few nights, which of course includes Whitlee. Then she said she’d been there for the 5 pm feeding and she’d sucked down her 40ml bottle in 8 minutes! I think she’s got this eating thing down! So Wendy was able to get a jump on her assessments for the night, and get all of her weighing and baths done. Whitlee is up to 4lbs 9oz now. Our girl is growing! Then she told us Whitlee had pulled her feeding tube out again… and that she was going to leave it out for as long as she takes her feedings by mouth! Her theory is (and I’ve personally witnessed it happen) is that babies that are on the verge of eating all feedings by mouth will normally go ahead and do it if you’ll take their tube out. There was a baby boy in there recently that was at the same point as Whitlee and kept gagging every time he’d eat, then he’d fight the bottle, so they’d drop the rest down his tube. Wendy let him keep his tube out after he pulled it out, thinking it was the tube irritating him, and she was right – he went home like two days later! Unfortunately, Whitlee’s doctor is out for the weekend so even if she does amazing, the replacement doctor doesn’t like to discharge babies that aren’t her admits, so we’d have to beg and really make her case, but it’s possible. Or it could end up being a situation where her doctor comes back Monday and the nurses are like, “Look how good Whitlee did while you were gone. Can she go home now?” I’m hoping, praying, wishing on shooting stars (I saw one on the way to the hospital tonight), wishing on 11:11, and crossing my fingers and toes that it’s soon!!

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Even at nearly 5 lbs, she still looks tiny with her Daddy!

Update – I called the NICU this morning while pumping (which is actually Day 18) to find out how she did through the night and she’s still going strong without her tube!! She has taken all of her feedings by mouth since 2pm yesterday. She just needs to keep it up and she can leave the tube out and come home very very soon!