I can't believe how long it has been since I last wrote. Writing was always so cathartic for me. And since I've always used this blog as more of an "anecdotal" blog, it was also a journal of sorts. I can go back and read old posts and remember little things that I had forgotten about. For that reason, I'm sad that I haven't been writing for the last [almost] year and a half. But I also know why I didn't write, and I don't know if my emotional fragility could handle reading back on this past year. There have been some wonderful things about this year--moving to a new house, our three week Christmas trip back to Indonesia, Raelyn's first and Logan's third birthdays, my parents coming to the states for their six month furlough--but in the whole scheme of things, this year has been the hardest year. Period. I feel like I've been such an emotional mess this week. I don't have any wonderful explanation except that tomorrow marks one year since we began this heartbreaking, faith-shaking, emotionally-draining, challenging, growing year. I have desperately asked the Lord to allow tomorrow to reset things. A new year. A new, wonderful year.
One year ago [tomorrow], we went in for (what we expected to be) a quick appointment with Raelyn's cardiologist. We knew she had two holes in her heart, but the holes were small. They were not going to be problematic. Or at least, they shouldn't have been. But at that appointment, the cardiologist told us that Raelyn's heart was retaining fluid, so she needed to start two heart medications. I was worried, but hopeful. The medications would fix everything, and we would be home free. But instead, the medication caused Raelyn to lose weight over the next five weeks. It helped her heart but otherwise, was causing a whole new batch of problems. At her one month follow-up five weeks later, she had lost a whole pound (which means a lot more to a five-and-a-half month old than to most) and we were immediately sent to a children's hospital about 45 minutes away. They discovered that she simply wasn't eating enough. She had no motivation to eat. She would nurse for five minutes and be done, only having gotten an ounce of milk when she needed to be eating at least four ounces at each feeding. After a miraculous three ounce gain during her hospital stay, we went home... only to have to drive to the children's hospital once a week in addition to almost daily weight checks at her pediatrician's office here in town. After four weeks, she had lost a few ounces again, and she had to be admitted to have an NG tube placed. I had been feeding her around the clock. My entire focus day in and day out was getting. her. to. eat. And I had failed. I was emotionally wrecked and barely holding it all together.
She started gaining weight pretty well for the first few days (doubling your food intake will do that), but then on a trip up north (where it was very cold), she caught a bad cough. Between the cough and the tube in her throat, she started throwing up everything she was eating and losing the weight she had gained. When we got home, I quickly found that nursing, pumping, tube feeding, washing pump parts, and keeping my other child alive was more than I could manage on my own. I tearfully begged my sister to come stay with me for a few days (ahem, a week, at least), and she was an angel and did. We also had a trip to Houston to meet with another cardiologist and a pediatric cardiothoracic surgeon, while both my sisters kept Logan at home. I went to Houston fairly certain that we were going to be scheduling open-heart surgery for our 7.5 month old, and I was terrified. The feeding tube was helping her gain weight, but very slowly. It didn't make any sense. By some miracle, we were scheduled to see the head of the cardiology department at the 2nd ranked pediatric cardiology/cardiothoracic surgery hospital in the country. And guess what?! He did NOT recommend surgery. On the medication, her heart was functioning as it should, though the holes were both still there. He recommended weaning her off the medication and FOR THE FIRST TIME told us that the medication, in very rare cases, can cause weight loss. (I'm no doctor... but that's what I had been saying from the beginning.) The surgeon we met with said Raelyn would have to twist their arms a bit more before they would do surgery. (Music to my ears!) And he very graciously said, "I hope I never have to see you again." From your mouth to God's ears, Doctor. Long story short, we went to Indonesia for three weeks. We gradually weaned Raelyn off her medications. When she pulled her feeding tube out for the millionth time the day before we saw her cardiologist again in January, we left it out and asked if we could go without it. Once she was off the medications and eating on her own, she gradually started gaining weight really, really well. By her first birthday, she had moved up to the 50th percentile on the growth charts (after dropping to the 10th from her original 78th percentile), eating more than we thought possible. Hundreds and hundreds of people had been praying for us for months. It was incredible to see the answered prayers. She saw her cardiologist again at the end of June and, praise the Lord, we don't have to go back for another cardiology appointment until next June! While some aspects of Raelyn's health still feel "on hold," we have thoroughly enjoyed seeing our precious little girl growing, developing, talking, eating, eating, and eating. But let me tell you... it was a long, painful year. And I'm so eternally grateful to be on the other side of it.
But then, as if all of that wasn't enough to warrant the "worst year ever" title, at approximately 12 weeks pregnant this past August, we found out that I had experienced a "missed miscarriage." Since the baby was only measuring six weeks behind and I was showing no signs of miscarrying on my own, I wasn't sure how long it would take my morning sickness ravaged body to actually recognize that the baby wasn't OK. And my sweet Logan kept asking me about the baby in my tummy, and it was too hard. I had a D&C (only because I was able to be under general anesthesia) and started the healing, grieving process without a baby inside of me. And it's been hard sometimes. I think everyone in the world is having a baby in February.
But in the midst of all these trials...God is the Master Author. I don't think I know what I learned through all of this that He couldn't have taught me in a much less painful way, but He does. And hopefully, someday I will too. (I often remind myself of the song "Diamonds" that says, "He's refining in His timing, He's making diamonds out of us." I sure hope I'm becoming diamond-like.) I have seen small glimmers of the positives that have come from this year. My time spent in hospitals and with a feeding tube and having medical equipment mailed to me every month...it really changed my perspective. There's a whole world of people experiencing similar things (and so much worse), and I'm not sure I had ever given them a second thought before all of this. It's still hard for me to hear about infants and children going through these types of medical issues (it's still so raw), but I'm now aware of it. And someday, I hope I'll figure out what to do with that. But my goodness, so many people reached out to us and offered help and encouragement and advice. I learned the amazing value of community. I learned to rejoice over so many little milestones. Raelyn now has a big ol' tummy, and I couldn't be happier about it. If you saw her, you would never know she has a heart defect. And THAT is so wonderful. My son sees pictures of Raelyn with her feeding tube and asks what it is. He never once did that when she had it--he didn't even seem to notice it! Logan spent most days with different friends (wonderful, kind people), and never seemed to feel like I was neglecting him. The Lord was faithful in bringing both my kids through a very hard, emotional time--though they both seemed unaffected. On the days when I felt like I just couldn't do it all over again, He did it through me. Even when I was yelling, telling God how unfair it was that my daughter was on the path to needing open-heart surgery...he was still there. I was carrying the burden of all of it--her eating, her weight loss. I was researching everything about pediatric heart surgery... and trusting God to do nothing. I don't have an amazing "aha" moment story where I let go and watched God come through right as I let go. But you know what? He came through anyway. He took my tiny mustard seed of faith and said, "That's enough." And that's amazing! A song came out in early spring (after the feeding tube was gone and she was gaining weight well) that says, "They say it only takes a little faith to move a mountain. Well, good thing. A little faith is all I have right now. God when you choose to make mountains unmovable, give me the strength to be able to say 'it is well with my soul.' I know you're able, and I know you can save through the fire with your mighty hand. But even if you don't, my hope is you alone." And every day I thank the Lord that he moved our mountain. But I hope and pray that if He hadn't, I would still be saying, "It is well with my soul."
Someday, I hope to feel another precious child kicking inside me (a feeling I ALWAYS took for granted). But until that day comes (and if that day comes), I have two living, breathing children that I love immeasurably more than I can put into words here. And even though a small part of my heart aches to think of it, if the Lord chooses to make this particular mountain unmovable, I'm ready to say that this is enough. I've been blessed beyond all measure, even without another child. My children keep me busy, keep me entertained, and fill my days to the brim with joy. (Most days...hah!) I still hope that's not my story, but it was an important step in my grieving process to focus on what I do have, instead of focusing on what I don't have. And being content in that.
But tomorrow starts a new year. Hopefully one full of healthy children, happy memories, and lots of laughter. [Because there are few sounds better than baby and toddler giggles.]
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