wolfhirschhorn.org

I want to start with a big thank you to the www.wolfhirschhorn.org community. You all are amazing, and my husband and I are so excited to meet you all.

Our little Elsa was born Dec. 28, 2011, full term. We went into labor on my due date (Dec. 27). Labor was smooth, with no complications. Elsa was born at 4 pounds and 15 ounces. Within minutes of her birth, my doctor requested that additional medical staff from the hospital (Prentice Women’s Hospital in Chicago, Ill.) come to pay Elsa a visit. The staff communicated that there appeared to be a “chromosome issue,” as Elsa “didn’t resemble either of her parents.” I must have heard the word “chromosome” 10 times, without a clue of what to make of it. I just kept asking, “What are you saying?” All of this transpired before my husband or I had held Elsa for any duration of time. It’s hard not to look back on this without thinking that it could have been handled much more sensitively, as meeting your child for the first time is pretty special, as first moments go.

Elsa’s blood was taken at the hospital, and we waited a week for the results. Elsa roomed in with us at the hospital, and was able to breastfeed right away. Aside from her low weight (which necessitated frequent blood sugar checks), there were no other health issues addressed at Prentice. We left the hospital two days after she was born. Elsa was 4 pounds 9 ounces at that time.

A week after her birth, the genetics results came back. (All the while, we had been thinking that the results were going to come back that there were no issues at all. Her facial features weren’t too unlike other members of our family, we told ourselves. We were certain that everything was fine.) We received the call from our pediatrician, who shared the details of WHS, from what he’d been able to learn in a short window of time. By the grace of God, we got in to see a pediatric geneticist at Children’s Memorial Hospital in Chicago the very next morning after learning of the diagnosis.

What a grim day that was. We spent 8 hours at the hospital — 3 hours with genetics, 3 with cardiology, 1 with kidney specialists and 1 getting our own blood drawn for a chromosome evaluation. Elsa hung in there, and we left with both good news and bad news. Her kidneys were fine, but she does have an ASD (moderate to large in size). Since that time, we’ve seen a lot of specialists. Her ears and eyes have for the most part checked out OK (she does need frequent eye drops to moisten her eyes, because she doesn’t always close them when she sleeps), and we have follow-up appointments scheduled. We also started to see therapists from an early intervention program last week.

That’s all the technical stuff. The good stuff? Elsa is amazing, and we are so in love. Even while she’s sleeping, we’re missing her! At almost 8 weeks old, she’s really honing in on our voices, beginning to hold onto things and is a rock star at tummy time (see photo below). And she loves the bath. We call it “spa retreat,” because the look on her face assures us that she’s transported to heaven every time.

We know that prayers are working miracles for her every day, especially those for her weight gain. Elsa continues to be a breastfed baby (with good days and bad days), and at most feedings we also supplement with expressed milk or condensed formula. She doesn’t love to eat, and it’s frustrating to see her below the weight/size curve of other babies her age. (It’s a source of real touch-and-go sadness for her mommy, in particular.) When eating, she sometimes needs a big break to calm herself and catch her breath, and getting the nipple (either one!) in her mouth is a challenge.

We are first-time parents and have always wanted lots of kids. Not knowing what the future holds for Elsa and for our family is the hardest part. But that has more to do with our expectations than anything else, which reveals parts of our hearts that we’re coming to grips with. And while it’s taking a bit of time for us to re-tune our dreams to allow Elsa the room she needs to simply be the baby and person she’s going to be, we’re getting there, thanks to all of your encouraging stories and to the love and support of our friends and family. We look forward to posting more in the months and years to come!