A long overdue update – but hopefully worth the wait!

So, a funny thing happened on the way to peds – they decided it’s time for Leah to go home tomorrow.

WHAT?

Let me back up. As you might remember, we moved over to the pediatric unit (peds) on Friday in the late afternoon. Leah was a pretty happy Bug on Friday, and she was especially happy to see familiar faces on her first day and night in the unit; both nurses had taken care of her previously in the PICU. By Friday evening, the doctors were saying she would be discharged on Monday. Monday! OMG. Monday.

On Saturday it all fell apart. Leah started off her day fairly decently, but she started to have a little bit of reflux at the 12PM feed, and by the 3PM feed we were learning all about the joys of projectile vomiting. In case you were wondering, she has pretty good aim. We assumed it was just reflux, so we made extra certain to keep her upright (aside from one diapersplosion incident that needed to be addressed stat) and she got her first round of 6 month vaccines as planned on Saturday afternoon. When she was still spewing milk at the 6PM and 9PM feeds, it became apparent that something needed to be done. The doctors were already planning to try a night feed anyway (three feeds spread continuously over the evening so that mamas can sleep), so they proceeded with that plan and just kept her on continuous feeds into Sunday morning. She threw up again around 6AM. By about Sunday afternoon the surgery team decided to discontinue Leah’s feeds and put her on IV fluids. The doctors wanted to start her on Reglan, but we declined that medication for a number of reasons, mostly because it can have some pretty serious side effects and if you get them, they don’t go away when you discontinue the medication. It’s not something you’d want to use lightly. So we were kind of at a standstill on Sunday afternoon, and BabyPie remained on IV fluids throughout Sunday and into Monday while we waited for the results of a viral panel (taken Saturday eve, I think) to determine whether she had contracted some sort of stomach bug.

Leah cried all day Sunday, at least during the time that we were there; Gran came to sit with her for a bit while we went back to RMH to do some cleaning and rearranging in preparation for an eventual homecoming. She was like the little gremlin that got fed after midnight. It was pretty awful. Poor little bunny. It was also a challenge being in a new environment because the nurses taking care of her by this time weren’t familiar with her normally sweet (albeit sassy) demeanor and neither were the doctors, so we had to keep reiterating that this was very atypical behavior for her. She doesn’t just cry to hear the sound of her tears. Something is wrong when she acts like this.

Yesterday (Monday) was pretty much a circus of doctors coming in and out of Leah’s room since we are so close to discharge.

The surgery team came in and proposed that it was possible Leah’s methadone had been weaned down too quickly; she had been transitioned from 0.4 to 0.3 cc on Friday, right before she left PICU, and then to 0.24 cc on Sunday. They said she could be experiencing some withdrawal symptoms, which could explain the vomiting. She had also spiked a little bit of a fever on Sunday night, and that could also be explained by withdrawal (although it could also be explained by the vaccines she received Saturday). They have been adjusting the doses so that she can be re-weaned a little bit more slowly. She had another fever yesterday, but she got some Tylenol and that has kept it under control. Surgery started up her feeds again at 50% breast milk and 50% Pedialyte, continuous, and they bumped her up to full feeds today. She will come home on continuous feeds via feeding pump.

She was also assessed by the pulmonary doctor, who agreed with us that a sleep study was appropriate and said he wants to keep her on oxygen until the study – which could be a couple of months. So she will come home on oxygen. She had been weaned off of it by Friday afternoon after failed attempts three days in a row (with the last attempt being Friday morning), but they put her back onto it on Sunday when she was squeaking like mad and working so hard to breathe. I had asked if the retractions might be contributing to her nausea and wanted them to see if putting her back on a tiny bit of oxygen would help, but it turned out to be a pretty good idea in general, I think, because her laryngomalacia was flaring up pretty badly by Sunday. The pulmonary doc also put her on Pulmacort, so she will be coming home with a nebulizer too.

Doesn’t this feel like The Price is Right? “Our contestants today will be going home with a lovely nebulizer, an oxygen tank on wheels, and a feeding pump!”

Last night was a whole other mess, what with our little Rockette trying to pull out her IV, getting swaddled (humiliating AND painful – two offenses in one!) and then crying for at least an hour afterward. See below for details about that fabulous experience.

Today has been another circus, but it is looking like Leah will be discharged tomorrow unless something goes horribly wrong (again). Let’s hope that doesn’t happen – tomorrow would be a good day. Leah could celebrate her very first night of Chanukah out in the real world. The general consensus is that she needs to get out of here before the flu and RSV starts permeating the floor. That time is coming very soon – it has already started to some degree. It would be very, very bad for her to get sick right now; she’s still pretty delicate, and she has a lot of respiratory issues, which would make even a simple cold pretty freaking dangerous to her. Since she is going home on oxygen, continuous feeds and methadone and since she isn’t ready to start swallowing therapy just yet, there’s really nothing she needs done here that we can’t do at home, in outpatient appointments, and through in-home therapy services. At this point in her recovery process it’s just safer for her to be out of the hospital. We have a long road ahead of us, but this is another good start in the right direction.

010 009
The speech pathologist came by last Thursday and did a swallowing assessment. She thinks it’s too early to start teaching Leah to swallow and feed orally because of her laryngomalacia and especially because her vocal cords are not moving sufficiently post-extubation. She will continue to work with her, but we won’t be feeding her by mouth at home yet. This whole feeding thing is going to be a long, long road. BabyBug did get her first little drops of water, though. She was like, “WTF?”

076
We are a tiny baby.

019 017
Mama decided to be HILARIOUS and put shoesies on the nakie baby and see how long it took Mommy to notice.

014
Baby Badass. She’ll cut you with her paci.

092
These shoes kinda make it hard to fear her, though.

084
The toes are even less fear-inducing.

109
Precious!

138
Our last day in PICU!

245
“Hello, friends!”

241
“Hello friends! My name is Baby Gene Simmons and I’ll be your new band member today.”

189
Our first full day in peds, before it all went to hell.

179
We just might be sisters.

030
“Um, Mamas? Really? Zebra print? With this dress?”

150
“LIKE, GAG ME WITH A SPOON! I TOTALLY CLASH!”

171
Sparrow-face for cousin Anya

154
Snugglies for Mama!

041
Faith and LeahBug!

050
Faithie works her magic!

057
We fell asleep holding our rings!

206
“This is how I feel today. BLAAAAAGH.”

208
Sleepy bunny

207
“Today sucks.”

235
Nap with/on Aunti Staci

111
If you visited BabyBug in PICU, you know that her wall was plastered with coloring-book pictures colored by various friends, family and nurses. We plan to put them all in an album for Leah so she can enjoy them for years to come. Mostly we had Minnie Mouse and some random generic unicorns and mermaids, along with a wild-animals coloring book. This, though – this was the highlight of last week. You don’t even know. I was five years old again. The top book had HOLOGRAM STICKERS! OMG. 80’s flashback. Sometimes it’s the little things that make you feel all warm and fuzzy.

081
Dear Lindsay, Michelle, Ezra and Mango Cat: For real? For real. This totally made my day.

8 thoughts on “A long overdue update – but hopefully worth the wait!

  1. Wow! What a perfect Chanukah gift! It also sounds like they’ve done a good job addressing your concerns from earlier this week, which makes it even more excellent.

    “Baby Gene Simmons” is HYSTERICAL.

  2. You girls are a well of love and patience….knowing the road will be long you both attack it. Imagine how she will feel with the sun on her skin and able to see cars whizz ing by. Her bedroom I am sure has been waiting for months…
    If you all get home for the first light of Chanukah what a miracle that will be…add another candle to the menorah!
    David and I will light our candle and say the Sh’ma for her tonight. Good luck going home ladies.

  3. What a wonderful Chanukah present! I’ll be praying that things go smoothly! How exciting!!! Babybug will finally be HOME!!! I’m so happy for you all!!

  4. Where did she get the tongue sticking out…like way out? She is so precious and I believe you two mommies can take care so sugar pie better that anyone else as long as you have the medicine and equipment that you may need. I vote for mommy & mama’s although I may be a tad bit prejudice 😉

    • That is the best news i have heard all day that Leahbug is going home today….Alright mommys u can do this be strong n stay focused bc now ur daughter will be home n will need ur full attention at all times n yes it will be a long long road but i pray hard that everything will fall into place in time….So So happy….Praying for all 3 of u u….Hope u continue to keep us up todate on her at home living if u have the time….hugs n kisses Babybug , love u sweetie….

Leave a Reply

Your email address will not be published. Required fields are marked *