“Ok, guys, everything is looking good—I think this was a false alarm. Hmm…I am concerned about the heart.” I would love to forget that moment, but I’m pretty sure it’s etched in my brain forever.
“When I heard, my body trembled; My lips quivered at the voice; Rottenness entered my bones; and I trembled in myself…Though the fig tree may not blossom, nor fruit be on the vines; Though the labor of the olive may fail, and the fields yield no food; Though the flock may be cut off from the fold, and there be no herd in the stalls—YET I will rejoice in the Lord, I will joy in the God of my salvation. The Lord God is my strength; He will make my feet like deer’s feet, And He will make me walk on my high hills.” Habakkuk 3:16-19
It sounds dramatic because it was. The good thing about having some Scriptures memorized is that they come to you immediately when you need them. I should definitely have more of them hidden in my heart, but I’m thankful for this passage that I’ve especially loved for a very, very long time.
I have 2 healthy older kids, a girl and a boy, and literally NO family history or risk of anything at all. I’ve done all the carrier testing—all negative. I’ve gotten pregnant in the first month of trying with all 3, never had a miscarriage, and I don’t even have so much as allergies. I could definitely eat healthier and work out more, but I’m a relatively healthy person, as is my husband. I’ve never been one to think that bad things can’t happen to me—I know that sometimes life just happens, and I’ve never taken my healthy kiddos for granted one bit. I’ve seen people braver and stronger than me go through much worse situations, and I have always had a healthy awareness that none of us are immune to tragedy. But I never really worried about it. And now it’s my turn.
This pregnancy has been pretty much insane. In the days prior to getting my positive pregnancy test, I’d had some bleeding, which concerned me because I had never had any of that with the first two. I called my OBGYN and they had me come in for a sonogram just to check everything. When they took a look, they couldn’t find a baby. She told me that either I was just too early, or the pregnancy was ectopic. I truly didn’t panic, because hearing that I wasn’t as far along as they thought was something I’d heard with my first two. Still, of course, I prayed. One week later, they did another sono and there WAS a baby right where it was supposed to be, but they were concerned about its size. Same story: Not worried, and praying. One week later, another sono confirmed that it had grown the appropriate amount! But now my progesterone was low, so I was put on pills that made me SUPER nauseous. (The Dr assured me that the progesterone was not causing the nausea but…IT WAS.) My doctor recommended taking half of a unisom before bed every night, and that did help some. I was able to stop the progesterone at 9 weeks, and then the nausea finally stopped completely around 18/19 weeks, which is also about the time I stopped the Unisom. (BTW, I did Unisom instead of Diclegis because it’s almost identical AND much, much cheaper, and requires a lower dosage.)
The 2nd trimester is supposed to be the BEST. Usually, you feel good enough to be active, you start really showing, and you aren’t so big that it’s too uncomfortable. I felt all of those things for just a little while, until my 20 week ultrasound. My doctor said that she just wanted to “double check a few things with the liver and diaphragm” and I would need to see a high-risk (MFM). We didn’t know this at the time, but my doctor did in fact see a heart malformation, and she suspected that it was affecting the liver (Sunley’s heart defect is actually NOT affecting her liver). Again, though we were a little more worried than with the flags before, we truly expected an all-clear from the MFM. We told our daughter that she was “finally” getting a sister and she was over-the-moon happy. We bought them matching shirts and announced her name: Sunley. One week later (December 20), was when I really started to be concerned for the first time. The sonogram took FOREVER, and of course, the sono tech wasn’t allowed to tell us good or bad things about anything that she was seeing, so we just pretty much sat there in silence, looking at a screen and wondering what she was seeing. After a long time (like an hour and half), the doctor came in and did a fairly quick re-check of everything the tech had done, and kept saying this organ looks good, the liver is fine, the diaphragm is developed normally, etc. Then the horrible, terrible 2-second roller coaster of pain: “Ok, guys, everything is looking good—I think this was a false alarm. Hmm…I am concerned about the heart.”
I looked at Derek and held up my hand and said “It’s fine, it’s gonna be fine.” As if I actually knew a single thing about hearts. But I think that’s a mom’s first reaction, even when things are definitely NOT fine: I can fix this, nobody panic, everything is FINE.
He proceeded to tell us that Sunley’s left ventricle was underdeveloped, or “hypoplastic” (I’m convinced that hypoplastic is the worst word in the English language.). He then mentioned his diagnosis, which was Hypoplastic Left Heart Syndrome, and said that we could expect to deliver in a better hospital, specifically Dallas or Houston, and that Sunley would definitely need surgery. I think I kind of went into a weird adrenaline rush, because I wasn’t even that upset. They scheduled us for an echocardiogram for 5 weeks later, to confirm the diagnosis. We walked out of the doctor’s office thinking Sunley would need A surgery…as in ONE…and then be cured. But of course, that’s not actually what the doctor said (and he had her diagnosis wrong, anyway). I told Derek, “Babies are born with holes in their heart all the time, and sometimes it even fixes itself. I know it’s scary, but we’ll be fine.” I even went to church that night, and didn’t get on Google until I got home and put the kids to bed. Worst. Night. Ever.
*I’m going to go into Hypoplastic Left Heart Syndrome, or HLHS, because in order to understand Sunley’s diagnosis, you do kind of need to understand HLHS treatment plans.
Google, in its infinite amount of information and terror, revealed to me that first of all, HLHS does NOT have a cure. In fact, 30 years ago, babies born with HLHS had no options for treatment, and would simply just die a couple days into their lives. The “good news” is that now those babies are receiving treatment, which involves 3 open heart surgeries: The Norwood at a few days old, The Glenn at 4-6 months old, and The Fontan at 4-6 years old. These surgeries do not give the patient a normal 2-ventricle system, but rather allow the patient to live on a one-ventricle heart. This means that the heart will always be working twice as hard as a normal heart. All 3 of the surgeries are dangerous (duh), but the Norwood statistically has the most danger, and typically does include many terrifying complications. The survival rates are not terrible, but it’s the quality of life afterward that sounded so scary to me. Some kids do GREAT (as in they have a lot of energy, great neurodevelopment, etc), and some just don’t. And there’s really no way to know what’s ahead for each kid, because the hypoplasty can be very mild to severe, the recoveries after each surgery can cause setbacks (or not), and a million etcetera’s. In other words, Sunley could have an almost normal childhood or a terrible life full of surgeries, or somewhere in between. That’s very hard to process, and since these surgeries really haven’t been around that long, the oldest HLHS survivors are just my age—Not because they can’t live past my age, but because that’s when treatments became available. So they may live much longer, or they may not—We just don’t have the data yet to predict their lifespans.
So this was terrifying information to read. Her surgery (surgeries) would not be a one-time surgical cure, but a lifelong condition, possibly FULL of medical emergencies (Ya know, or NOT full of emergencies).
Is this hard to follow? I agree. It was a complete roller coaster. It was then I first experienced what I have dubbed the “Pleading Mother Cry.” It’s therapeutic, really, but definitely a different level of crying than I’ve ever witnessed or experienced myself (And I’m not really a “crier.”). I’ve decided that the only people who can cry that hard are parents, or probably people trying to become parents, when they start to lose hope. I’m sure there are other levels of this Mom Cry in even worse situations, but nonetheless there were bigger tears and louder sobs than would be socially appropriate outside of my house. I spent the next five weeks researching doctors, procedures, and survivors, and most of all BEGGING the Lord to restore her left ventricle. The only thing that seemed to actually help was prayer, Scripture, and stories of misdiagnosis (you know who you are – thank you!). I prayed desperately that the MFM had seen it wrong, and that my doctor had seen it wrong, or that the left ventricle would grow to normal size, or that God would at least give us a lesser heart defect. Those 5 weeks were absolute torture. I was surprised to feel a little bit guilty. I shouldn’t have taken Unisom, I should have researched the effects of progesterone pills (should I have asked for progesterone shots?), or maybe I should have continued taking the progesterone longer. I definitely could have eaten healthier, or drunk more water and less coffee. As much as I know it’s not actually my fault, those questions will always kind of be there. And they are straight from Satan, trying to discourage me, make me feel like a victim, trying to make me a bitter woman. I think as long as I can recognize when those waves come, I’ll be able to keep a positive spirit and keep my heart focused on God and what He wants to do with this.
So after those horrendous 5 weeks, it was FINALLY time for our echocardiogram. Again, a super long appointment, with us blankly staring at a blurry, black-and-white beating heart, not having a single clue what was going on. It was pretty evident early on that the heart was not normal, just based on some terms I heard them say to each other (which I had Googled), and it also seemed like the left side didn’t look so bad ( I didn’t really know what I was looking at, but I’d Googled enough to have a very vague idea). I was praying so hard throughout the whole thing. About halfway through the echo, the counselor walked in and introduced herself. PSA for all the doctors: It is NOT comforting when the counselor walks in, and then just stands there waiting for the echo to be done. I probably could have been nicer to her and made conversation, but to be honest I was pretty bummed to see her because in my mind, that meant for sure something was wrong. After the echo, the cardiologist showed us a drawing of a normal heart and started explaining how it SHOULD work. I was trying to listen, but I just kept wanting her to rip off the band-aid and tell us if she had HLHS or not. Unfortunately, she was about to give us another misdiagnosis.
Continued in Part 2.