After 18 long, agonizing weeks of waiting and wondering, our little Sophie Louise made her debut into the world on January 16th!
We’ve been on such a rollercoaster of emotions to get here. From being told our Sophie would not make it to term, then having hope as we watched her grow each week, to then be told that she was not growing anymore and would likely be born premature (if she were able to handle the stress of labor at all). Every week got harder and harder, but it was clear by the end that we weren’t ready to give up on Miss Sophie. She’d worked so hard to make it here.
We decided to induce at 38 weeks, since Sophie was measuring so small in the womb. The idea was to get her out and start gaining weight. She surprised us all when, after 10 relatively easy hours of labor, she arrived weighing a full 5 pounds, 12 ounces! Small, but definitely not the 4 pounds they thought she’d be!
After Sophie was born (and after a few quick cuddles, of course), she was taken straight to the NICU for observation. They wanted to make sure she would be able to maintain all of the basic functions that might be affected by her brain disorder. It wasn’t long before the doctors and nurses were amazed at how well she was doing at maintaining her own heart rate, respirations, blood sugars, and temperature. She was also eating well on her own, a huge relief! We spent just 3 days in the NICU before coming home.
We’d had a fetal MRI done at 21 weeks, but now that Sophie was here, the doctor’s wanted a repeat MRI to make sure her diagnosis was correct. We didn’t expect anything to change since we’d been doing regular ultrasounds throughout the rest of the pregnancy, and it only took a day to confirm that Sophie’s brain structure was indeed consistent with lobar holoprosencephaly (HPE).
So, we’ve had a lot of people ask…what does that mean?
Now that she’s here and doing just fine, does that mean she’ll be ok? Unfortunately, the answer is no.
Sophie will always face challenges. Her brain structure is not something that can be fixed. Instead, we’ll work to manage any complications that arise as a result of it. Seizures, hormone deficiences, poor muscle tone and motor skills, and intellectual abilities are just a few of the common struggles that come with HPE. Most kids with HPE are unable to walk on their own and many are non-verbal (though that’s not to say they don’t feel emotion or communicate in their own way). From speaking with moms of other kids like Sophie, we most likely won’t start to see the delays or signs of HPE until around 6 months of age.
What we do have on our side is knowing so early about Sophie’s condition. Because of this, we’re able to be proactive in looking for any issues that can be managed with medication now, and we’ll start physical therapy in the next 2-3 months to help her meet her developmental milestones at her own pace.
We’ll have at least 1-2 doctor’s appointments per week for the next 2 months as we meet with specialists in neurology, genetics, endocrinology, audiology and opthamology, in addition to her regular pediatric checks. We’re very lucky that our pediatrician is already familiar with HPE (certainly not many are), and she’s doing everything possible to make sure Sophie gets a leg up on any challenges.
The most frustrating part about HPE is that each case is totally unique. It’s impossible to predict how one child will be affected compared to another. With time, we’ll learn more about what Sophie can and can’t do, but for now we have to take things day by day…month by month. That’s easier said than done for this anxiety-ridden mama.
And while I’m so incredibly happy that Sophie is here with us and doing so well, at the same time I feel so terribly sad. Why did she have to be dealt such a bad hand? Why does she have to struggle where all the other kids will get along so easily? How come she doesn’t get a chance at a “normal” life?
I hope in time these feelings will be easier to cope with. I know understanding God’s purpose for her life will take some time. But right now, it does weigh heavy on my heart. Especially watching such a little, innocent child to go through so much.
But she is here. That’s far more than any doctor expected from her. And she is so loved. As long as she’s ready to keeping fighting and defying the odds, we’ll be right here alongside her doing everything we can to help.
She’ll be perfect in her own way. She will teach us things we could never have otherwise understood. And maybe, just maybe, that will be her purpose.