Things You Can Tell Just By Looking At Her… and Things You Can’t.

I know we’ve talked a bit about Leah’s having some medical complications. I just wanted to take a moment to give you a rundown on what she is facing right now. So here you go:

Things you can tell by looking at Leah:

She is adorable.
She is tiny.
She is squirmy.
She is a diva.
She is a fighter.

Things you can’t tell by looking at Leah:

She has Down Syndrome.
She has esophageal atresia as well as a choroid plexus cyst and several small holes in her heart.
It will be at least five months before we can bring her home.
What color is her hair???

Esophageal what? Allow me to explain. Throughout Mandy’s pregnancy, the doctors were never able to visualize Leah’s little stomach on the ultrasounds. Since we already had a strong suspicion (and later on a near-certainty) that she had Down Syndrome, that led to the additional suspicion that there might be a medical reason for this invisible stomach. For kids like Leah, the biggest medical concern that doctors watch out for is heart defects, since about 50% of the kids with Down Syndrome are born with a heart problem. Another problem that occurs less frequently – but still with greater incidence among children with Down Syndrome – is atresias along the digestive tract. This means that openings and passageways between digestive organs are not completely developed.

In Leah’s case, the doctors suspected tracheo-esophageal fistula (where a portion of the esophagus connects to the trachea) or esophageal atresia (where the esophagus doesn’t connect to the stomach). Often they occur together. From what we can tell so far, Leah has a pure esophageal atresia, which means that they don’t think the trachea is involved. Her esophagus stops pretty high up in her chest, and the docs haven’t been able to tell yet how long the tract is on the stomach end. They want to hold off on even doing a study until she’s gained a bit of weight. At that point we will have a better idea of what she is facing surgery-wise. The docs won’t want to operate until she is about 10 lbs (which they guesstimate will be in about five months). If the gap is short, the surgery is fairly straightforward and they can operate, fix, and let her heal. If the gap is long, the procedure becomes more complicated, and preparation alone can take days or weeks and carries more risks. So keep your fingers crossed for a short gap!

As far as updates go, Miss Leah got her nasal cannula out yesterday, so she is breathing all by herself now! Sometimes she gets a little bit too relaxed and forgets to keep breathing, but for the most part she is staying on the job.

We transferred to Ronald McDonald House yesterday after Mandy was discharged from the hospital, and we are getting settled in. Mama Mandy is still pretty sore from her surgery, but she’s being a trooper. Mama Lisa is still chugging juice boxes and broth.

Oh – and for those of you who brought baby food jars to the baby showers, you’ll be happy to know that we decided to donate the baby food to Ronald McDonald House instead of SOVA. They were thrilled to receive the jars as baby food is a product in high demand over there.

Pictures coming soon!

15 thoughts on “Things You Can Tell Just By Looking At Her… and Things You Can’t.”

Thank you for all the updates! She’s already making progress, learning to breathe like a big girl. I hope you’re settling in well and both getting some time to rest up and take care of yourselves.

What blood type is Leah? When I was donating blood with the Red Cross, I was told I am CMV negative – suitable for donating to preemies and people with challenged immune systems.
I am A+. If you ever need a blood donor.. what’s mine is yours.

Razi, we’re working on it!! Theresa, thank you very much! I hope we never need it, but we appreciate your generosity. I am not sure what her blood type is, but you and I have the same!

This is such a wonderful way to get updates about Leah and you 2 Mommies who we think of so often during our day. It sounds like there is good to report on her medical condition every day. We hope she gets stronger and stronger. Hugs to you all,
Jess and Toni
XO

Thanks so much for thinking about us, Jess and Toni! Leah needs all the positive energy she can get. She’s generally been progressing well. I hear with preemies it’s often three steps forward, two steps back, though, so I’m keeping my fingers crossed that she keeps progressing well!

By the way, Jess, I posted a question to one of the boards on BabyCenter and somebody sent me back a private message asking if my baby was born in Los Angeles because my story sounded familiar. It turned out to be one of your friends from the South Bay group. Small world. 🙂

Dear Leah,

You are loved. You and your mommies are in my daily devotions, and tucked into my heart. My prayers are for your health, and comfort; and for strength for your mommies, and to guide your doctor’s hands.

Much love,
Andi

Visited my Leah again today & yes she is squirmy! She wants the mask off her eyes so bad she keeps taking it off herself! Hopefully she will have it off in the next couple of days. I spoke to her a lot and sang You Are My Sunshine to her….she seems to like Gran’s voice even though I can’t carry a tune! Love Love Love my Leah

Awww, little squirmy Leah. Remember the breathing part, kiddo! Wishing you all well, and hoping for a teeny gap.

Also, Sharon — I bet Leah likes your voice because she’s been hearing it for a couple months already!

Thank you Lisa for sharing. Happy belated Mothers Day to both of you. Leah is your little diva. Our fingers are crossed and we’re praying for a small gap, a routine surgery and a speedy recovery. May this time fly so you can bring your baby home as soon as possible. Hugs to all three of you. – Robin and Rebecca.

Welcome to the crazy (and not as fun) world of NICU parenting. Here’s hoping you are HOME sooner rather than later with a healthy, HUNGRY girl!

Yes Cynthia; I have been talking to her for a few months now…but not singing! I hope she can tolerate the not so beautiful singing voice LOL

I think about the three of you daily. It seems that little Leah is a trooper and will come through with flying colors. Sending good thoughts and lots of love.