Oh boy, have we got a treat for you! We have pokey-tongue, we have scrunchy face, i.e. “I wanna cry but it’s too much work,” we have waggly feet, and Leah threw in an extra detail you’ll just have watch to see.
Monthly Archives: May 2013
Long day!
What a long day! We had our intake session with the Ronald McDonald House family services intern today, so we didn’t even get over to the hospital until the afternoon. When we arrived, Little Miss Sunshine was free of her tanning booth. They have moved her to a six-hour schedule with the bili light, which means she gets six hours without Mr. Horrible Awful Mask and six hours with him. So we got a glorious several hours of mask-free baby deliciousness. She did not disappoint. Leah is so expressive. We got all sorts of funny faces today – some yawns, some scrunchy faces, some tongues sticking out, and even a few little eyeballs with an accompanying smile. I wish I had time to capture that last one on the camera. Precious!
We had some more Mama Kangaroo time this afternoon – and this time Mandy and I each held her for a little bit longer. She would not get comfy on my chest, so we put her with her back facing me, which seemed to calm her down.
Auntie Staci came to visit tonight, and while we were in the room visiting with her, we gave Leah a pacifier and she nommed on it for a little while until she got too calm and went all bradycardia on us. She’s been doing that all day, even when we’re not holding her. As we said goodbye to her for the evening I called out (quietly), “Nite nite LeahBug! Don’t forget to breathe!”
I’ve been getting super-batty from lack of sleep so it’s a short post tonight. I’ll overload you with cute instead.
p.s. We are running out of verbs and adjectives and other parts of speech to adequately express how blown away we are by your awesomeness and generosity. Us: grateful… floored… staggered… amazed… stunned… You: awesome… wonderful… supportive… generous… community. Thank you.
And now for some pictures.
Baby’s getup today
Big yawn
Sleepy baby
Toeses
Fingerses
Spirit fingerses
Vogue…
More fingerses
Eeeennhhhh, Mamaaaas, get this tube outta meeee!
Silly baby. This is not what I meant when I said she sticks her tiny tongue out around the tube. This is more like, “NYAH NYAH, I’M CUTER THAN YOU!”
E.T. Phone Home
An update and 2,160 thank yous
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:
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
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!
Fingers and toeses
And now, for your daily fix of baby fingers and toeses:
This concludes your daily fix of baby fingers and toeses.
Late night musing
I think I’ve figured out why I can’t keep track of the time. Somehow when you wake up every 3 hours so your wife can pump… it feels like so many more days have passed. Maybe that’s why some people say the first month of life with a newborn feels more like a year. It’s like Groundhog Day. Somebody go grab the Sonny and Cher albums.
One more pic
Hopefully I’ll have time to post some more photos tomorrow, but I couldn’t resist this one – we have a Glo Worm in the family!
Leah has been under “bili lights” for a few days now, and for a while they had this glowy blanket under her as well. Because of the bright light over the isolette, they keep her eyes covered with an eye shade that looks like little sunglasses. I think I posted a picture earlier. Her bilirubin levels had been rising, which is why she has been a little rock star for so many days now. It was so adorable at first (I think they should make some eye shades with cucumber slices printed on them), but by now we are just impatient to see her teeny tiny eyes! She’s getting pretty impatient too – today she tried so hard to pull off her mask that it folded her ears in half – I had to peel them open and back into position! What a silly bug. The nurses finally gave up and fitted a different kind of mask on her.
Her levels were coming back down as of this afternoon, so we’re hoping we’ll be able to start seeing her whole face more frequently.
Leah and I had a really sweet moment this afternoon, though, while they were giving her a break from the eye shade. I started humming “Tum Balalaika” to her, and she opened *both* eyes and looked up at me. I swear I almost cried. And I’m not really a crier.
More pictures!
Yesterday we visited some more with the LeahBug. She loves being held and I can’t wait ’til we can snuggle with her without 8,000 cords and cables and tubes getting in the way. There’ll be a couple of tubes until she has her surgery, but two would be a vast improvement on what she’s got now!
I *heart* this photo. Mandy is such a good mama already.
Mama Lisa the Kangaroo
Look at me! I’m holdin’ a baby!
Comfy cozy on Mama Lisa’s chest
Look Mamas! No cannula! The LeahBug is breathing all on her own! And I still say she looks like her Grandpa Bill.
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!
Mama Kangaroo
Since baby Leah got her vent out yesterday morning, we were finally able to hold her! She looked a little bit too tired to take her out in the morning, so we waited until the afternoon. We each got to hold her for 15 minutes, which is about how long it took the nurse to get her out of the isolette in the first place – this is one “plugged in” little girl! But the nurse finally sorted out all of the cords and tubes and wires and set her down on our chests, where she snuggled in. When the nurse put Leah on Mandy’s chest she even tried to open her eyes and look up at her mama.
