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!
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I may be a little biased (as Elsa’s auntie), but I think Elsa is an absolute dream! We feel so blessed that she is in our lives. She has the best mommy and daddy ever. I know she will continue to exceed all expectations. Love, Aunt Betsy
Hello Elsa and family and welcome to the WHS family! My name is Kristy, mommy to Dylan (turned 3 yrs yesterday), and I wanted to say the Elsa is simply beautiful. It sounds like she is doing very well and believe me she will continue to amaze you everyday. I know the beginning can be rough but happiness and smiles will be there too. I look forward to reading more about Elsa’s progress and following your journey.:)
Welcome to the WHS family. My little one is Arin and she still amazes me everyday.I hope to meet you at the 4P- conference in Indianapolis this July. Please continue to post on Elsa. I am on Facebook: Brianna Horney-Hauck if you are on there and you can email me at briannahauck@yahoo.com. COngrats on your cutie she is so precious.
What a beautiful post. Thank you for it, especially the last paragraph! I feel the same way. Our little one is 8 months. Breastfeeding such tiny babies in the first months is brutal, but hang with it! She’ll get better and better at it. It just takes time.
What a beautiful little girl. My grandaughter was born on Jan 26, 2012. She was a C-Section at 37 weeks and weighed in at 4lbs 10oz. I feel you pain as my daughter is dealing with the same issue. Elsa is a doll and I will pray for her and your family!
Anitra- it’s encouraging to hear your wonderful story about Elsa and the amazing outlook that you guys have for her. We can’t wait to meet her! She is adorable.
Thank you all for the support, comments and prayers!! So excited to get to know you and your beautiful children!
Elsa is a precious one! And also very impressive, holding her head up so high. My little Ava isn’t doing that yet and she’s exactly 3 months older than Elsa. You’re right, it is rough at first, but it sounds like you’re a great mommy and your daughter is lucky to have you! Welcome.
Congratulations on your first beautiful baby girl. Elsa is lovely. She’s a little doll. You have approached parenthood with courage and optimism. Although the first appointment with the geneticist was stressful for you, Ella was given a through examination, and an opportunity to recieve early treatment. It will make a big difference for her future. Keep us posted. Your perseverance and success with breast feeding such a small baby is remarkable.
Welcome aboard! Great to hear Elsa is doing so well. As others have said, holding her head up, grabbing and managing to breast feed (even partially) are all awesome achievements at such a young age. I look forward to getting to know you all better over the coming months.
Congratulations on your little lady! She seems to be doing amazing while hitting those wonderful milestones along the way. We are still getting to know the community from our sofas as we have a little man scheduled to arrive in April 2012. I wanted to reach out as we live in Chicago and will be delivering at Prentice as well. Do you and your family live in the area? I would love to chat doctors and specialist sometime in the future. Congratulations again on your beautiful little lady.
Anitra – Thank you so much for sharing the update! I am so glad to hear Elsa is doing well which is due to the support from her wonderful mommy and daddy. She is so lucky to have the two of you for parents. She is such a cutie! Looking forward to more updates.
Welcome Elsa and family! What a great introduction of your daughter. Your last paragraph particularly resonated with me. My son Frank is two-years-old now, and we went through many of the same thoughts and emotions (not knowing his future capabilities, re-tuning our dreams, etc.), and we’ve come a long way, but sometimes it’s still hard. It sounds like you have a great insight into what’s important. Also, if she’s breast feeding… Wow. She’s doing great. You have good reason to be optimistic about her future! I’m looking forward to hearing more about her.
Welcome, Sweet Elsa! You are already so incredibly strong, and I know that you will continue to amaze your mommy with your achievements. As others have already said, you are one strong little cookie! Welcome to our family! xo
I got to meet and hold Ms. Elsa today and she is absolutely beautiful! She also has two AMAZING parents! XOXO to the little princess!
Well, I am so proud of your family. Dan and Anitra, Elsa has truly been blessed. What an amazing family God brought her to.
It was quite touching to read your story. We are looking forward to seeing you all soon.
She’s precious.
I read your update about Elsa’s new sister, and came back to your first post to read all about your first born. Belated congratulations on your super adorable Elsa. Those eyes that don’t shut completely at night are captivating. They speak to someting deep inside of me. They seem to be telling me a similar story that my Rochelle tells me, but it is a story told without words, so it is difficult to understand, but it certainly grabs and holds my attention. Rochelle is 33 years old. I remember that her eyes did not shut completely during sleep when she was small. They do now. She has thin eye lids. They cause her to be extra sensitive to the sun. Like Elsa, Rochelle loved long baths. She still does. The big difference between Elsa, and Rochelle, is 33 years of acquired information about WHS, the fantastic start you have given your child, and this web site. I hope you have have a long happy healthy family life together.