First accidental milestone

BabyBug did something pretty freakin’ cool tonight.

We asked earlier today if we might be able to take Leah outside for a couple of minutes just so she could experience fresh air and sunshine. The docs said no. We did get her nurses to agree to let us bring her to the pull-out couch a few feet from the crib so we could give her real tummy-time and give her some new surroundings for a little while. Mandy sat next to Leah on the pullout bed and put her on her tummy. Leah struggled for a minute and then pushed herself up – and then rolled over. Now, to be fair, Mandy was sitting on the bed so there was a slight incline in the direction that Leah rolled. But she pulled herself up onto her arms and she tipped herself over. That’s gotta be some sort of cool milestone, right? First accidental milestone? We tried to get her to do it again on video, but she had worn herself out and spent most of the remainder of her tummy time trying to eat the sheet we had laid out under her.

Now for a random musing: It’s funny how nurses sometimes try to rationalize a situation without fully assessing it – kind of like the other day when they assumed BabyBug’s horrible raspy breaths were actually the sounds of the suction tube sucking when in fact they suggested the opposite. Tonight I let the night nurse know that Leah’s suction pump was vacillating between off and barely-on-but-not-really (it’s on low intermittent but this was pretty ridiculously low). She said it was supposed to be like that because it was on low intermittent suction, and headed back out. I watched the meter for a minute to see if it would change, and then went out and got her again and said I thought maybe someone had turned it down because the meter was not really moving and neither were the secretions in the tube (it’s happened a few times that a nurse would put it on continuous suction to flush the tube and then forget to switch it back to intermittent, so someone turning it down was certainly a possibility). She looked and repeated that it was supposed to be like that. I said no, usually the meter is a lot higher. She said she didn’t want to put it any higher because it would suction too much. I said it wasn’t moving at all.

Then she looked more closely and saw that the tube wasn’t plugged into the pump.

As soon as she plugged it in, the meter shot back up to where it was supposed to be.

Do I feel a little foolish for not noticing that myself? Sure. But it’s not a connection that I typically deal with since it’s on the other end of a tube that is 4-6 feet long (I guesstimate). And in any event, is it my job to make sure the medical equipment is installed correctly? No. But it’s my job to speak up when something feels wrong. Thankfully this nurse did follow through when I continued to push the issue, instead of letting her ego get the better of her. I can just imagine how things might have gone with Mr. Mean Man. But I still think it’s interesting/odd/funny how the instinct seems to be to assume things are as they should be.

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Baby and Mommy

Meeting with Leah’s surgeon

So! There is a plan.

We spoke with Leah’s surgeon this morning, and it sounds like we are getting back to what we originally anticipated: They will aim to perform the Foker procedure, in which Leah is immobilized (it basically sounds like an induced coma) for anywhere from 3-12 days while they attempt to bring the proximal and distal ends of her esophagus toward one another. They do this by putting sutures in the ends of each pouch and putting tension on the sutures each day to encourage the tissue to both grow and stretch. Some doctors will allow the procedure to go on for up to a month, but Leah’s doctor seems not to agree with that approach.

The surgery will likely take place at the end of October. It would be a bit earlier in the month, but the surgeons will both be out of town at various points in the month, and the one with whom we spoke today said he doesn’t want to be away while Leah is recovering, because vigilant monitoring will be critical to her recovery, particularly if complications arise. Recovery time in the PICU following the procedure is about a month, though it could be longer for Leah because Down syndrome can slow the healing process. Once we take her home she will need extensive OT/speech therapy and monitoring, as there are several complications that could occur which would result in the need for additional surgery. I think it’s pretty safe to say that she will be coming home with the g-tube and will continue to rely on it for some time.

If the Foker procedure doesn’t work, or if the docs see the gap “face to face” and decide it’s just too long to perform the procedure safely, they will do an esophagostomy, also known as a “spit fistula,” in which they bring the esophageal pouch out through the neck to let it drain externally (I guess they would create a hole in it). At that point we would bring her home and then return when she is about a year old for any one of several alternate methods of repair, most of which involve using tissue from other parts of the digestive system to create a makeshift esophagus. While the latter approach would get her home sooner in the short-term, a successful Foker procedure would give Leah the best chance of ever eating normally – so that’s what we’re hoping for.

So there you go. I’ve been saying it would be great to have Leah home by Thanksgiving, but I think it would be more realistic to hope for a return home by the end of the year. That leaves us with another 3-4 months in this limbo, staying at Ronald McDonald House and spending as much time as possible by Leah’s side in the PICU. If you haven’t already shared our GoFundMe link with your social networks, we would appreciate it so much if you would – and please encourage them to share as well! The link is http://www.gofundme.com/leahandhermoms, but you can use http://www.leahbug.com as a shortcut.

Thank you again so much for your continued support and your sweet comments and happy thoughts and prayers. You’ve helped us through this so much. October and November are going to be particularly difficult months but it makes us feel better to know that there are so many people who care about Leah and her progress and who will continue to send her good energy throughout her surgery and recovery. Much love to you all.

More photos than you can handle

Whew – it’s been a few days since I gave you a good update! These past few days have been largely uneventful in terms of major issues. Let’s keep it that way! Leah has had a lot of visitors “this September” (also known as the past three days). Last week she had special visits from her Grandpa Bill, her Aunti Staci and friend Kimmy, and her Gran. On Sunday, she had a visit from her friend Sharon from Mandy’s choir. Later in the day, cousins Kim and Jenna came over (after going on a wild goose chase for cornstarch for us – thank you!!!!!), and Jenna held a baby for the first time ever! Jenna even got to help give Leah a bath, comb her hair, and pick out an outfit. I’m sure Leah and Jenna will still be hearing about the visit years from now.

Yesterday, SweetBug’s alter-ego emerged after an extended absence – you can call her Ms. CrankyPants. I really can’t blame her, though. At 6AM the mean vampire nurses came in to steal her blood. (Okay, they really were not mean at all, but if you were 4 months old I’m sure you would think the same of anybody who came at you with a needle and a bunch of vials. Or maybe you still feel that way.). A little later in the morning, the surgical residents came to put silver nitrate on the new granulation tissue around the Mini button. Then, the occupational therapist came in to make Leah WORK! She had to hold her head up, grip stuff, pretend to stand up, move her neck from side to side, watch stuff with her eyes… it was exhausting. You don’t even know. So by the time our friends Marie and Donald came to meet Leah, she was suuuuuper cranky. We had all these awesome intentions of putting the kid in her hand-crocheted Minnie Mouse outfit (courtesy of another of Mandy’s choir friends), but she was not having it. Alas.

Later in the day, Grandpa Bill and Grandma Barbie came for a nice visit. Grandma and Grandpa snuggled with BabyBug while the Mamarazzi hovered and took video and pictures and Grandma Barbie tried to swat her away. It didn’t work. You can’t stop the Mamarazzi! Muahahahahaha!

It wasn’t until after my parents left that we were finally able to get the little diva into her Minnie outfit. At that point it was a matter of principle. Plus we wanted pictures. 🙂 We took pity on Leah and changed her outfit once we were done with our little photoshoot. She went from Minnie Mouse to Lady BabyBug – complete with antennae-bearing hat. We took the ladybug hat off after the second round of pictures, ’cause we’re nice like that. Baby finally knocked out in the early evening. This morning my friend and old law school classmate Beth came to visit, and pretty soon we are going to have a Very Special Visit from cousins Beth and Brian and Erin, who we haven’t seen in weeeeeeeks ’cause they were out of town. Leah misses them so, and is especially excited to see Cousin Erin and find out if she met Minnie Mouse on the Disney cruise.

The Big Deal of this week will be the meeting we have with the surgeons on Friday to discuss next steps for Leah. If you were wondering why we needed cornstarch: the doctors are having the nurses treat the Mini button site with 1:1 portions of Nystatin powder and cornstarch to keep it clean and dry, and Leah is still on oral antibiotics. They are applying silver nitrate about every other day or so. I worry about how Leah will do with major surgery when she has responded so poorly to the g-tube insertions, but I guess that’s part of why they want her to get bigger before doing a repair.

And now, you shall have pictures.

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Showing off our pretty orange dress. Orange is our color. Also pink and blue and green and yellow and purple.

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PolkaBaby pokes her tongue out.

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Bored Polkababy is bored.

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Polkababy says, “Get away from me with that suction tube!” (Or some other equally-irritating baby torture device)

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Leah loves her Grandpa Bill

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Three generations of pun-tastic dorks. Well, two really, but I’m going to take a leap and say Leah will take after her Mama and Grandpa in this respect.

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Caption me, please!

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Snuggling with Grandpa Bill. Sooner or later she will realize how much fun it is to pull that beard.

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Grandpa Bill, upside down.

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Our little monkey in monkeys

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Did Grandpa just tell some sort of silly joke?

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Mamasmiles and Babysmiles

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“Hi Gran!”

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Nomming on Gran’s shoulder

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Sleepypie

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“Oh hey guys! OMG, isn’t this dress like, totally adorable? OMG!”

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Dainty little fashionista is ready for her closeup

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“Bored now.”

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Sweet sleepy bug gets Mommysmooches

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LOOK AT THOSE FEET! BabyBug says, “Thanks for giving me your old jammies, Ruby! They are so comfy and FEEEEEET!”

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High five!

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Bitty bitty hand!

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Mommy and BabyBug. One of Mandy’s former students bought Leah this little ladybug set (it came with a couple of other items as well). It’s too cute!!! We love it!

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Showing off LadyBabyBuggie

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Caption me. Please let it involve the Baby Mafia.

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“Oh Mama. You had WHAT for dinner?” Oh Buggy. Probably a jar of baby food.

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“What do you MEAN, I’ll have to eat that stuff someday?”

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“Actually, it would be kind of cool to eat something.”

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SleepyBug with her smiling daisies

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Toesies

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Sharon and her awesome shirt. Leah seems to like it!

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“Really, you don’t say?”

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Cousin Jenna holds her first baby. I love the little look on Leah’s face in the middle picture. She is such a dolly!

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SmilyBug and Jenna

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Bath time!

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Baby gets her hair did

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“Monkeys! An excellent choice, cousin Jenna!”

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Kim taking a picture of me taking a video of Kim

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Jenna and Kim

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Grandpa and Lisa

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“Minnie: The Sneak Preview,” starring Ms. CrankyPants

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“Sigh. I give up.”

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Kissyface

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Mama and MinnieBug

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Mama and Sleeping MinnieBug

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MinnieBug

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“Hey, who you callin’ Goofy?”

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More MinnieBug

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Portrait of a silly family

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“OMG. Please tell me this isn’t going on the Internet.”

 

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“OMG. First Minnie, now this.”

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Lady BabyBug

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“I’m the king of the world!”

Awww

Leah’s night nurse from last night came in this evening with a gift for Leah: A pack each of size C and D batteries. How completely sweet is that? I was just joking to her last night that we were going to have to buy stock in Duracell because our little Bug is so enamored with her vibrating bouncy chair and vibrating boppy-knockoff insert (which we put on the bed to make it vibrate). That was so totally thoughtful.

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Smiling daisies

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Our little fashionista

Baby and her impeccable timing

We spent most of the day at Mandy’s brother’s house for our nephew’s 10th birthday. BabyBug slept most of the morning, and was sound asleep when we got back. This does not bode well for our sleep this evening. We both almost fell asleep at 9PM – I am wishing we had taken the nap then! The Tiny Diva is wide awake.