Two years!

Two years ago today, our sweet LeahBug was born, two months early, via crash c-section on account of the toes she tried to dip into the world before jumping out. She was a miracle then and she is a miracle now – the strongest person I know, and the happiest and most genuine. This child amazes us every day and I look forward to every lesson she teaches us. Happy birthday, Leah!

IMG_0719-1.JPG

Teeth and twos!

Hey, so guess who is turning TWO YEARS OLD on Friday?

What? How did that happen??

Yep. Ms. Bug will be two years old in just a few days. I can’t believe it – the hospital days feel like they were ages ago but somehow also feel like they were just yesterday. Not sure how that makes sense, but it is what it is!

So, where did we leave off? Leah LOVES school but has also been out sick for a week. She still has the cough from the respiratory infection she had in March, and it is sounding worse and worse. Poor kid! She will be getting tubes placed in her ears in June; she has fluid in both ears. We hope this will improve her progress in language development as she should be able to hear better. We hope.

Leah is learning all sorts of new things, and is starting to develop preferences. For example, when she bangs blocks together she wants them to be the same color (in the next few days I will post a video demonstrating this), and she has a favorite book (“The Very Hungry Caterpillar”), which she can listen to as many consecutive times as we can tolerate reading it, plus one. And, AND, she has SIX teeth! Two front teeth and four molars! The front teeth came in last, because Leah operates on her own timetable. And let me just tell you – if you thought Leah couldn’t get any cuter, you didn’t envision her with teeth.

IMG_0638.JPG

Drugged Bug

Rough day in BabyLand! I mean, not awful, all things considered – just exhausting for all three of us. Leah had a great dilation this morning. Her stricture started at 15mm and they dilated to 18mm. This is the first time they have ever been able to begin where they left off at the previous procedure. Awesome news.

The not-so awesome news is that Leah wasn’t tolerating any of her feeds – she threw up every time we tried to feed her. She has been gagging all day, even turning bright red at one point. (She also looked like a little tomato when she came out of surgery – bright red in the face!)

Ultimately they don’t see signs of a perforation on her x-rays, but figure that she could probably use a little more rest before she eats again. We can’t take her home unable to eat, so they’re keeping her overnight for observation.

And oh – did I mention that her IV came out TWICE? The first time she kicked it – I looked down to see a little pool of blood around her hand and called the nurse over. The second time I’m not sure what happened.

I felt so bad about that first outage, though – for Leah, but also for the little girl (maybe 8? 9?) who had come by from a few stalls down to ask if the baby had gone into the OR all by herself. Her mom was clearly trying to comfort her by showing her that even the baby was just fine going in by herself. That was definitely not the best moment for her to walk into – screaming baby, blood all over the place… I hope she didn’t see anything. I brought Leah down to the little girl’s stall a few minutes later to show her that Leah was smiling and okay, and to tell her she would be just fine in the OR. These poor kids, having to deal with so much when they’re so small.

Speaking of which, we ran into one of Leah’s NICU friends in Peds today! We are their neighbors. Small world. We knew they were in the hospital overnight but didn’t know we would get placed right next to them on the floor. It was nice to see them – the little girl has grown so much!! She was the only other baby with T21 that we knew about when Leah was in NICU.

Anyway… We are in peds now and Leah is deliriously hungry. She’s so mad. SO MAD. She wouldn’t calm down and ultimately I had to ask them to give her some Ativan, since fighting and crying only burns more calories.

Sleep time. I’m so exhausted.

Update

Leah is out of surgery and is settled into her room. She had a dilation to 14mm as well as a steroid injection. The GI doc said her esophageal stricture was somewhere between 5 and 8mm diameter before the dilation.

The surgeons then repaired her Morgagni hernia. Again. Her surgeon said it looked like nobody had ever been in there – the hole was completely open again, and according to the surgical resident, this time it was her small bowel and a portion of liver poking up through the hole. Doc used a mesh patch to close the hole so that there would be no tension on the sutures. Hopefully it sticks this time around!

We also had an unexpected surprise when Leah came out of surgery with a Mic-Key button instead of her usual AMT Mini One. It turned out that they had accidentally gotten betadine on the old button when they took it out to do the procedure, and the Mic-Key was all they had handy to replace it. That situation has been remedied and Leah has her Mini again.

Leah napped for a bit after a good long fuss (she is in a lot of discomfort) but now she is awake again and crying with a sad little hoarse voice. Poor bubbie! Time for more morphine!

Surgery day!

We spent the night at RMH last night and Leah is due at the hospital in an hour and a half for her second diaphragmatic hernia repair. Her little colon is grumbling plenty this morning. Perhaps it knows something is coming to rescue it. The surgery is at 10AM. They are also doing a scope and possible dilation.

Will keep you posted. In the mean time, just look at this face.

20140606-062030.jpg

Here we are again!

Leah had her dilation Thursday morning, and we were back at home by the early afternoon. It was very hot at home and Leah was pretty cranky – and before we knew it she had worked herself up to a fever of 101.6. At its highest it was 101.9, but somewhere in the mid-100’s I started trying cooling measures. When after 45-60 minutes her fever had not decreased, I gave her Tylenol and called the Peds clinic as instructed on Leah’s discharge papers. The advice nurse told me to take Leah to see a doctor locally just so she could be examined, but a few minutes later she called me back and told me she had paged the doctor who did Leah’s dilation and he wanted her back at the hospital to be admitted for overnight observation. The fever could be from the heat or maybe from the anesthesia, but it could also be from an infection arising from an esophageal perforation.

Once she was admitted to the hospital, they did a chest x-ray (which looks fine) and a blood culture. Today they did a viral swab and urine culture as well, to rule out regular baby stuff. Initially it had sounded like they were only going to keep her overnight for observation, but ultimately the doctor decided he wanted to keep her for the full 48-hour blood culture, which means we will likely be here until Sunday morning. As the doctor put it, the risk of a perforation / infection occurring is very low, but the risk to Leah’s health if it does occur is very very high, so although it will likely turn out to be nothing, it’s better to err on the side of caution.

On the bright side, Leah had a visit today from her great-grandpa as well as her great-uncle and great-aunt, who live on the east coast and met her for the first time today. We were supposed to have dinner with them tonight but Leah had her own plans, so it turned into a hospital visit instead.

Speaking of Leah’s having her own plans… our tiny bug is turning a year old in less than a week!! How did that happen????

20140503-004801.jpg
Baby jail again, Mamas?

More photos coming soon. It takes time to sort and upload them, and those captions don’t write themselves, ya know. Well, some of them do…

A quick update

Sorry it’s been so long – busy week! Quick update – Leah had another dilation tomorrow (Thursday), and they will inject a steroid into her esophagus to help ease the inflammation and keep the stricture from tightening after dilations. They will keep her on the weekly schedule for the time being.

We also had an interesting discovery in speech therapy today – Leah has not been turning when she hears sounds and voices, but there seems to be a difference depending on what side the noise is on. She turned to investigate a rattle shaken on her right side even while she completely ignored it when it was on the left. In PICU all the bells and alarms were on the left – and the left side is also the side the ENT could not see. So we still don’t know what is going on, but it is something.

20140312-233054.jpg
Trying a little something new with the cannula… We will see how it goes!

I believe I said Nakie Baby can’t be trusted?

Apparently, neither can Clothed Baby.

Our little ladybug had an adventure today! Gran was with BabyBug because Mama had an appointment. Not half an hour after Mama left, Mama (that’s me, in case you weren’t sure) received a phone call from Gran. “Lisa! Emergency! Leah pulled out her g-tube! What do I do?” Oh, BabyBug. This makes the first time she has actually physically pulled it out herself as opposed to it getting stuck on something – and it has been a very long time since that happened. Definitely the first occurrence of 2014. Leah’s surgical nurse practitioner was kind enough to see her on short notice, so Gran and BabyBug took a little field trip. Good times.

In other news, Leah had speech therapy the other day, and the cutest little 4-year-old girl became totally enamored with her in the waiting room. So they came over to sit by us, and the other mommy and I chatted while the kiddo giggled nonstop at how funny and cute our little bug is. And for Leah’s part, she did not take her eyes off of this little girl the whole time we were chatting. She was fascinated. I’m pretty sure she was trying to figure out whether this was a very large baby or a very tiny grown-up. She hasn’t spent a lot of time around other kiddos. It was pretty adorable.

During our visit, Leah’s speech pathologist assessed her for non-swallowing speech services and found that she does qualify for speech therapy, so she is going to set some goals. Leah is so expressive that I think sometimes people don’t see her receptive language issues until we really point them out (which is funny, because from what I’ve been reading, in older kids with T21, it’s usually the other way around!). She doesn’t respond to sounds by looking for them or even responding to them, at least not until the source gets into her line of sight. I don’t think it is her hearing, though of course I could be wrong. She will be assessed again in the near future, I’m sure. I think that she learned to tune things out during her nearly 7 months in ICU, and now needs to be taught how to attend to sounds that are important. When Mandy came home the other day, she talked to Leah from the other room before she came into the living room, and Leah had no reaction – until she saw her Mommy, and then she was pleased as punch. Hopefully this is something we can work on.

I can’t remember if I already posted this, but at Leah’s GI appointment, the doc said he could feel her liver. He is going to run some tests next week when they do the next dilation, but didn’t seem too concerned.

Oh, one more thing: we are TRYING to have Leah sleep in her own room tonight. This will be a first. Wish us luck. I think it’s harder on us than it is on her.