Three steps forward, two steps back

May 20, 2013

By Lisa

BabyBug is a rockstar again today. Her bilirubin levels went up again between yesterday and today so once again she’s a superstar with her little sunglasses. She’s being a little bit more cooperative with the eye shade this time around. We’ll see if that keeps up!

Leah is also still forgetting to breathe occasionally. She had a bad episode while I was in there and had to have her mouth suctioned again, which makes three times in 24 hours. Hopefully as she gets bigger and stronger this will happen less often, but in the mean time I’m glad she’s being monitored so closely!

The good news for today is twofold: 1) Leah’s food is being increased once every 12 hours now instead of every 24 hours; and 2) We’re at 3 lbs 10 oz now! Good BabyBug!

Cute Overload

May 16, 2013

By Lisa

Well, we had a nice eventful day, in terms of cute.

Technical stuff first: Baby is now up to 3mL of breast milk per hour, on a continuous basis. Good girl! We held her again today, and she only had one bradycardia episode during that time. She had a few this morning and I think she had one again this afternoon. That’s the thing where she forgets to breathe and then her heart rate drops. Today she had a lot of irregular breathing; she would pant for a bit so her breathing rate would go way up and then it would come back down. But eventually she mellowed out.

Daily fingers

While I held Leah, she drummed her fingers on my chest and nommed on the suction tube, making little slurpy/kissy Audrey II sounds in the process. No video, unfortunately. After I held Leah, it was Mama Mandy’s turn. Leah decided she had enough of the outside world for one afternoon and buried herself face down square in the center of Mandy’s chest. It was ridiculous. I wish I could show you the picture, but it’s a little breasty.

When it was time for Leah to go back into the isolette, she had to get her little mouth suctioned, as she does every so often, since the suction tube doesn’t get it all.

“PPHHHHTTTHHH! GET THIS THING OUTTA MY MOUTH!”

“Oh wait. Maybe that’s not so bad after all.”

As you can see, once she was back in the isolette we got a fabulous treat – eyeballs!!! And that’s pretty much all you see here! She’s like a Joss Whedon power character (like Mean Willow or something), all eyeballs. You can see in the video I posted earlier that she actually kept her eyes open long enough to take in all the giant blobs surrounding her. Hopefully she recognized the Mama Blobs.

After a while, Leah let out a few pitiful little cries (she’s working on that voice!) and we decided to practice a little bit with the pacifier. It seemed to calm her down!

And just in case you’re really planning to hold me to this daily fingerses and toeses thing…

Here you go.

And courtesy of my sister, some excellent screenshots from the video. It kind of goes along with her last ultrasound, doesn’t it? I love that scrunchyface.

An update and 2,160 thank yous

May 14, 2013

By Lisa

Let me just say that it’s only been a few hours since our good friend Faith launched our GoFundMe page, and already we are totally floored by your generosity. When Mandy came back from pumping I told her the total raised so far and she got tears in her eyes. You are all amazing and we thank you SO MUCH, both for your generous donations and your kind words of support and encouragement. Leah has some fabulous cheerleaders in all of you.

As we mentioned before, Leah got her first feeding of breast milk today! They will increase the “serving size” gradually over the coming days and weeks until she is at full feeding through the g-tube. Until then, she will receive supplemental nutrients through her PICC line, which was placed last night. The poor little bug has little puncture marks all over her hands and feet, so hopefully with the PICC line placed, she won’t get poked and prodded in quite so many places.

I got to hold Leah again today! Yesterday I relinquished my “turn” at kangaroo time because Leah’s heart rate kept falling while Mandy was holding her and we wanted to get her back to bed. Today we talked to the doctor and she said it’s still okay for us to hold her even if that happens – we should just limit the skin-on-skin time to a certain amount of time until she gets a little better about remembering to breathe. We are holding her hand a lot instead. But today I got my turn. She looked so cozy! It reminds me of that first ultrasound where she had her hand up by her mouth. She’s going to be a thumb-sucker for sure!! We had to wake her up four times while I was holding her, so I only held her for a little while, but it was an awesome little while! She is so precious, and so TINY. She’s still working on her cry, so she makes these little crackly noises that sound like Gollum. “My preeeeshus, my preeeeshus maaaaamas.” We have heard a couple of little squeals out of her. Mostly she scrunches up her face like she’s going to cry but then changes her mind. OH – and check out her little folded ears! I can’t wait ’til her bilirubin levels are normal so they can take that mask off for good. She HATES it and keeps pulling it down, bending her malleable little ears in the process.

Here are some more pictures for your enjoyment:

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This is babybug’s uniform today. She’s ditched a few tubes and cords but it’s still so much. She really dislikes the tube that goes into her esophagus, except when she decides it’s convenient to have a chew-toy right there in-mouth for her enjoyment. Sometimes she sticks her little tongue out around it and it’s quite possibly the cutest thing in the world.

Could you not just stare at this little face forever?

Tomorrow’s toeses today, in case I forget.

Update on Mamas and Baby

May 14, 2013

By Lisa

In case you’re wondering how Mamas are doing… Mandy is recovering from her c-section, slowly but surely. She’s in a little bit more pain than usual today, and really needs to take it easy. Hopefully the pain will mellow out soon. I’m still feeling lousy, albeit better than yesterday. I tried out a tiny bit of mashed potatoes last night (it was okay earlier in the week) and so far so good. I had a little more this morning, but now, a couple of hours later, I’m beginning to regret it. Ah well. You win some, you lose some.

And since I can’t post just about us… LeahBug’s bilirubin levels are still coming down. Hopefully she gets to ditch the tanning booth some day soon. But she has some even bigger news for you today: She got her first little drops of breast milk! She is on a continuous feed, so she’ll get a little syringe full of breast milk delivered directly into her stomach over the course of four hours. She seems to be tolerating it well so far, but it’s only been about two hours since they started, so we’re still waiting to see how she does with it over time.

Fatten up, little Leah Bug!

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

May 13, 2013

By Lisa

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!

Look world! No vent!

May 11, 2013

By Lisa

Baby Leah got her ventilator removed today, so she’s now breathing for herself, though she’s receiving oxygen through her nose. She was working really hard and looked exhausted this morning, but she still tried to open one little eye to say hi to her mamas.

“Look, Mamas! No vent!”