Well, over two months ago I said I was going to try to update my blog "within the next few weeks..." As that was in April and it's now July, I obviously didn't follow through. Going forward, one of my mid-year resolutions (why wait until New Years?) is to update this blog at least once a week, if not more. So fingers crossed that I actually make that happen this time!
The last time I updated this blog with anything interesting, I left off right after my induction/Adelaide's birth. Needless to say, a LOT has happened since then. So, here goes my attempt at catching up and telling our story. (Disclaimer - I just finished writing this entry and came back up here to warn you - it's long. And rambly.)
Adelaide was born on a Thursday night - September 8 - at 7:25pm. The three days immediately following her birth were filled with visitors, smiles, and lots of snuggles with our baby girl. I couldn't get over how perfect and beautiful she was - I know every parent probably says this, but Adelaide is seriously the cutest baby ever born, and that has been true since the very first moment she entered this world. I loved having people come visit us, and loved showing off my baby. I was exhausted and sore from having a c-section, but that was all secondary to how happy I was.
I was worried that because she was born via c-section, Adelaide would have trouble breast-feeding, but she caught on like a champ! She was eating well, pooping and peeing well, and checked out well each time the pediatrician on call came by. We saw three different pediatricians while we were there, and they all commented on how great she looked! One of them made a side comment that Adelaide looked a tiny bit jaundiced, but that it should probably resolve on its own. I remember when I heard that, I got pretty worried... ironically, in hindsight, a little jaundice would have been nothin'.
Sunday night, our friends Jenn & James came to hang out and have dinner with us. They left around 8:30 or so and Brian, Adelaide, and I settled in for the night. As we had done over the past several days, Brian and I took turns snuggling Adelaide and we enjoyed our family time while we took turns saying how amazing she was.
Sometime close to midnight, I was in the rocker in our room when I felt a sharp pain in my leg. I called the nurse, who came to take a look, and she then consulted with the OB on-call. The OB decided that we should go down for an ultrasound of my leg, just to make sure there wasn't anything weird going on. Because I had a c-section and was spending so much time laying in bed, there were a few things they wanted to rule out - including a blood clot (I was at a higher risk for developing one due to the fact that I wasn't moving around much). The nurse asked Brian if he wanted to come down to the ultrasound with me, and offered to bring Adelaide to the nursery while we were out of the room. Up until that time, the only time Adelaide had gone to the nursery was for her daily checks - weight, a few tests, etc. Other than that, she had been rooming in with us. I was a little nervous to leave her, but after the nurse reassured me that Adelaide would be okay and that they would NOT give her formula or a pacifier, we decided to leave her in the nursery and Brian went with me down for the ultrasound. (Again, in hindsight - formula and a pacifier? So not a big deal. But at the time, I was ready to throw down if anyone even suggested giving her either of those two things.)
By the time we went down for my ultrasound, the pain in my leg was already long gone. I was still nervous, though - I was convinced that they were going to find something, that I was going to need surgery, or something else extreme. Maybe that was illogical, but I was running on VERY little sleep and obviously a little emotional/hormonal. Luckily, the ultrasound checked out clear and the tech said there was absolutely nothing he could see that would have explained the pain. Relieved, we headed back upstairs to our room.
When we got there, the nurse told us that they were going to keep Adelaide until it was time for her next feeding, so I could get some sleep. I didn't think anything of this and was excited for the chance at a few hours' rest. We went into the room and went to sleep.
A little while later, I woke up to see a new doctor in our room, talking to Brian. We hadn't seen him before, but as it turns out, he (Dr. Loughead) was a cardiologist from Childrens Memorial Hospital. He was telling Brian that they had some suspicions that Adelaide had a serious heart condition and that they were running a few tests to confirm what they thought it might be. Apparently, during my ultrasound (while Adelaide was in the nursery), one of the nurses noticed Adelaide breathing more quickly than normal and saw that she was a little bit discolored. So, she called the doctor on call, and he said something along the lines of, "Well, it could be nothing, but there's a small chance it could be this... so let's do an echo and see what's going on." "This" turned out to be hypoplastic left heart syndrome (HLHS) - a heart defect that involves the left half of the heart being severely underdeveloped and non-functional.
After Dr. Loughead left, Brian and I just laid together and I was crying my eyes out. I had this horrible sinking feeling in my chest, and I couldn't stop bawling. I tried to stay positive and think that maybe this was a mistake and that the tests would show there was absolutely wrong with Adelaide, but I knew deep down that we were in for some devastating news.
A short time later, another doctor from Childrens - Dr. Kumar - came into our room. She had a packet of information with her and sat down next to my bed. She broke the news to us that the echocardiogram had confirmed Adelaide's diagnosis of hypoplastic left heart syndroms. She then reviewed the details of HLHS with us - symptoms, treatment, prognosis. She told us about the three-part surgery series that Adelaide would go through to basically re-route the plumbing of her heart to help it function as a four-chamber heart, even though it was only a two-chamber heart. She reviewed the survival statistics with us, and told us that the survival rate for the first surgery in the series (the Norwood Procedure) had a success rate of 95% at Childrens Memorial. (Without surgical intervention, HLHS is almost uniformly fatal.)
While 95% sounds like a great statistic, of course all I could focus on was that other 5% - the 5% chance that the surgery wouldn't work and that I would lose my daughter. I was a wreck, but Brian was very positive and tried to help me focus on the fact that 95% is a great number, and that Childrens Memorial Hospital (where Adelaide was about to be transported and where she would have the Norwood) was a very reputable childrens hospital. Don't get me wrong - he was devastated as well, but he was amazing at trying to help me freak out just a little bit less.
Dr. Kumar left our room probably around 4:30am. Before she left, she told us that Adelaide was currently in the NICU downstairs, and that the doctors were working to coordinate a transport team to take her down to Childrens Memorial Hospital in Chicago. She assured us that Adelaide was stable and that we would get to see her before she was transported, but encouraged us to try to get some sleep first. I asked her probably twenty times to make sure that our nurses let us know before Adelaide was transported - I was so worried that someone would forget to tell us and that we would miss the chance to see her before she was taken to CMH. Dr. Kumar reassured me that no one would forget to tell us, as did our nurses.
For the next few hours, Brian and I tried to sleep, but the most we were able to "sleep" was for maybe 15 minutes at a time. I kept waking up and crying, and Brian was mostly awake and trying to keep busy/distract himself. Finally, around 7:30 or so, a nurse came to get us and brought us down to the NICU to see Adelaide.
I had no idea what to expect when we saw her, but I was relieved to see that she still looked like our little Adelaide - honestly, she looked like there was nothing wrong with her, except she had a bunch of IVs coming out of her hands/arms. Sometimes, HLHS babies need to be intubated (put on a breathing tube/machine), but thankfully Adelaide was strong enough that she didn't need that. We were able to hold her hands and talk to her for a little while, and the hospital chaplain came down to the NICU and blessed her with us. We got a "certificate of blessing" and talked with the chaplain for awhile; he was a very sweet man, and we told him the story of how the doctors had discovered Adelaide's HLHS.
I know I already told that story earlier in this entry, but on my end there's much more to the story than the actual events that unfolded. In a nutshell, the nurses realized that Adelaide wasn't looking like herself while she was in the nursery, so they called a doctor who ordered some tests and discovered her HLHS. But the longer version - the more complete version - involves way more than that.
I had a sharp pain in my leg that caused me to be sent down for an ultrasound. This pain went away pretty soon after I had it, but it obviously caused me to have a scan of my leg done, and caused Adelaide to be in the nursery at the exact moment she needed to be - she needed to be there so the nurse could notice her strained breathing and call a doctor. My leg checked out perfectly fine - there was no medical explanation for why I had that shooting pain. However, I know that the reason I had that pain was so that Adelaide could be in the watchful eyes of the medical staff so they could discover her HLHS. We were scheduled to be discharged only 12 short hours later... if she hadn't been in the nursery, who knows what would have happened? She might have struggled to breathe while she was in the room with us, and if we had been sleeping, we might not have noticed. It's possible that she might have then come home with us later the same day, and I can't even let myself think about what would have happened if she had. A lot of times, HLHS babies go home undiagnosed and seemingly healthy, and then they get really sick really quickly shortly after they're home.
A quick physiology lesson for you all - in HLHS, it's pretty common that undiagnosed babies appear healthy right after they're born and don't exhibit symptoms until 3-8 days after birth. The reason they stay healthy-looking for several days sometimes is that all babies are born with an open PDA in their heart, and the PDA typically closes 3-8 days after birth. If you want more details on the PDA, you can click here. But for the sake of this blog entry (that is already long enough), all you need to know is that while the PDA is still open, HLHS babies' hearts function somewhat normally so they appear healthy. Once it closes, HLHS babies often go into shock as the blood flow in their bodies is suddenly disrupted and since they don't have a functioning left ventricle, this is very, very bad news. In healthy babies, once the PDA closes things are just fine, because the heart functions normally and doesn't need the PDA.
So, what we think happened was that Adelaide's PDA started to close while she was in the nursery, which would explain the symptoms she exhibited. Luckily, because the doctor responded quickly, they were able to start her on an IV medicine (prostaglandin) that worked to keep her PDA open and therefore help her blood flow stay somewhat normal. We are SO lucky that this was caught as early as it was, because Adelaide stayed surprisingly strong throughout her whole ordeal... had she gone home with us, she might have gone into shock and while there's a chance we would have been able to get her to a hospital in time had that happened, there's also a chance that things wouldn't have gone that way. And because there's no need to even let my thoughts go down that path, that's all I'll say about that.
So anyway. To sum up, there was absolutely no medical explanation for that pain in my leg - but there is definitely an explanation for it. I strongly believe - with absolutely NO doubt - that God was (and still always, always is) watching out for Adelaide... and that He was making sure that we would not go home with our little girl. Why else did I have that pain in my leg? And why did I have it exactly when I did? The timing of my leg pain, the ultrasound, and Adelaide's starting to exhibit symptoms... some might call it coincidence, but that's absolutely not the case. I will reiterate that up until I went down for my ultrasound, the longest Adelaide had been out of our room was 10 minutes. Up until I went down for my ultrasound, she seemed 100% healthy and we had absolutely no idea what was going on. Had I not gone down for my ultrasound, there is a very good chance that we would have been discharged 12 hours later and taken Adelaide home, completely unaware that she had a life-threatening heart defect. And things might have looked very, very different for us.
As Adelaide's story progresses, there are several other instances of things that happened beyond any reasonable explanation - beyond any possible coincidence... things that have made me believe with absolute certainty that there are hands guiding my little girl through life, and they aren't of this earth. I'm not trying to "push religion" on anyone who is reading this - we all believe what we believe, and the purpose of this blog isn't to start a debate on whether or not what I'm saying is true/logical/in agreement with what others might think. But whether or not you're religious, it's hard to deny that there is a greater purpose - more going on with what happened to Adelaide - than I can wrap my head around. And hopefully as I continue with this blog, I might start to better understand that.
So, for now, I'm going to wrap up this entry and start working on the next. Thanks for reading, and stay tuned...
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