Baby jail a week later

Leah had the gastric emptying study on Thursday morning. She spewed almost immediately after they injected the milk into her tummy – but to be fair, she hadn’t had anything in her tummy in over a week and they put 30cc in all at once. That doesn’t even happen with her g-tube feeds. The gastric emptying study came out relatively normal – technically a very, very mild delay, but functionally normal. So no pyloromyotomy.

Surgery was Friday. Not a lot to say there – they did the Nissen and fixed the hiatal hernia repair, and also confirmed that a large segment of the omentum had forced its way into the chest cavity through a tiny hole. They were surprised at how much had managed to get through this tiny hole, but it did, and now it’s back where it belongs.

Friday and Saturday were largely days of rest and drugs. Yesterday Leah spent a little bit more time awake, and managed to get through the whole day without morphine – very exciting. Today was not such a fun day. At 4:30AM Leah woke up wailing and wound up vomiting. Vomiting?! It was wretched and horrible, too – like liquid morning breath. Gross. (I’ve come up with many adjectives today – abysmal, vile, foul, etc. Worse than a diaper.) Poor child – that can’t be very pleasant for her. That happened six more times today, including one episode that lasted a couple of minutes and included some scary little eye rolls and shaking. It appears that her secretions are pooling in the bottom of her esophagus since everything is still pretty swollen around the fundoplication. When it can’t pool anymore, it comes up!

The docs were also a little concerned that they seemed to be seeing milk in the g-tube when it was venting, so they did an x-ray. I swear, this kid is going to glow in the dark by the time she’s a teenager. The x-ray was fine, except that she is pretty backed up from several days of being given morphine and other meds and not really being fed. Her little bowels are just not really awake and moving. So we’re working on that.

Leah has also gotten in the habit of WAILING when something happens that displeases her – and I’m not sure whether it’s out of pain or annoyance, but either way, it’s heartbreaking. OT came in today to work with her a little bit and she was able to sit with some support from the Boppy, but when the OT went to lay her back down, it was like a siren going off – WAAAAAAAAAAAIL. So we let her stay in the Boppy after the OT left. About 15 minutes later, I noticed that she was starting to drift off – several times her eyes fluttered shut until she tipped forward or backward or just shook herself awake. “I’m not tired, I swzzzzzzzzzzzzzzzzzzzzz.” The minute she was lying down she was OUT COLD.

At present, Leah is basically glued to Mandy’s shoulder, and is wailing every time any attempt is made to put her down. She actually got her breathing treatment over Mandy’s shoulder.

We HOPE tomorrow is the day, but I’m just not going to say the H word right now.

Back in Baby Jail!

My next post was supposed to be a photo blast, but there’s a funny story about how we went home from the hospital Friday night and then came back Sunday evening… good times.

So. On Friday (I think – maybe it was Thursday. It all blends) they did a chest x-ray and an echo. The heart looks okay, although for the first time her cardiologist said he is thinking this might be a VSD that requires repair. If it hasn’t gotten smaller by the time she is about 4, they will probably repair it. The chest x-rays keep showing this mysterious spot on Leah’s right side, but the surgeons seemed pretty sure it was residual from her hernia repair. On Friday they started Leah on erythromycin to see if that would help her stomach empty enough so that she wouldn’t keep retching and vomiting stomach contents. It worked for a while, and they sent us home Friday late afternoon / early evening. Of course she spewed as soon as we got in the car! But we had been told that could continue for a little while, so we headed home. On Saturday our friends came over in the morning for a visit with the Bug, and then Leah and Mommies went to a picnic for new parents of babies with Down Syndrome. We went last year too, but this time we got to bring LeahBug with us! Leah’s two friends from the Baby Party back in March were also there, so they hung out together and people kept asking if they were triplets. It was pretty cute.

BUT all through this very fun day, Leah was still retching, and she didn’t really keep down her meds on Friday night or Saturday morning, so we got on the phone with her primary doctor ASAP. I tried very hard to reach her GI since he had instructed us to have him paged if we had problems, but the nurses are pretty staunch gatekeepers, and even when I tried to call back on Sunday, I was informed that if the doctor really wanted me to be able to reach him then he would have given us his direct number. Um. I don’t think so. I kept calling and pushing and they finally paged him, and I got about 30 seconds into the call with him before he said she needed to come back. The concern was that she wasn’t getting her cardiac meds and that’s not okay. So they admitted Leah again on Sunday night.

On Monday, once it was established that all of Leah’s cardiac-related blood labs looked good, the GI said her meds could go into the J-port on the GJ tube. Cardio did an echo just to  They wanted to keep her long enough to make sure she was tolerating the meds through the J and then we could go home, but we would need to have a follow-up with her other GI in clinic on Tuesday. At some point during the day surgery decided they wanted to get a CT before Leah went home – they were going to order an outpatient CT to check on the mysterious spot over Leah’s right lung, but figured since she was inpatient they might as well just get it done. The CT was scheduled for 6PM, and at that point we figured if we were going to have to go to the clinic the following day we might as well just resolve ourselves to staying over for one more night. It’s a good thing we didn’t plan for discharge – the CT wound up not happening until close to 11PM. Leah was so tired she forgot to be cranky, and just sort of looked around with bleary eyes and little delirious smiles.

By morning, the plan was no longer for a Tuesday discharge. The CT showed that some of the omentum (the fatty layer that covers the intestine) was starting to poke up through the mesh on the hernia repair. You can imagine how surgery does not like the idea of repairing this Morgagni hernia over and over and over again. Their plan as of last week was that Leah would keep the GJ in for a few months to keep down her food and get a little bigger, and then once they were certain the stricture was completely resolved, she would have the Nissen fundoplication to help control her reflux. But they think that all of this gagging and retching may be putting strain on the hernia repair and not letting it heal. So Leah will finally be getting the Nissen on Friday. She will be having a motility study done tomorrow and if her gastric emptying is severely delayed, she will also have a pyloromyotomy – the same surgery that Mama had last summer.

Odds are we will be in the hospital until early next week. (And I would like to point out for the creeper Internet’s sake that other people live in our house besides us, so don’t think it’s unattended.)

In more uplifting news, Leah is getting extraordinarily bored in her crib, so we took her out in the Peds wagon for the first time and she LOVED IT. She kept rocking back and forth to make it go faster like she does with her PT swing. She will be thrilled to learn that she has a wagon waiting for her at home that she just hadn’t been Big-Girl enough to play with yet (thanks again, Candy and David!!!). She also saw one of her old therapy dog friends in the hall – the collie who wore the Dodgers uniform at Halloween last year.

Oh – and that picture that went viral is now at 698,000 likes.

Still working on pictures, but here are a few to keep you busy:

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Baby Party II

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Their faces don’t look anything alike, but they are all roughly the same size and have about the same hair color, so people kept asking if they were triplets!

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Deep conversation.

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How cute is this bow?

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“Fan me with palm fronds.”

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“Giddyup Mama!”

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“DOGGIE!!!”

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“Teehee. It’s a doggie.”

Here we are again!

So apparently I haven’t posted since the last time Leah was in the hospital? Yikes! I have a picture post in progress but I guess I’ve been working on it longer than I thought.

So. Leah had a dilation this morning. Or rather, Leah had an endoscopy this morning. They didn’t have to dilate!!! Her esophagus is a uniform width at this point, which is So Awesome and Exciting.

Now for the less-exciting part. Leah’s vomiting and retching have both gotten worse since the last dilation, and they were already pretty bad going in, which is probably why she wouldn’t hold anything down in the hours immediately following the procedure last time. Her doctor proposed putting in a GJ tube at her next procedure and we have been agonizing over this decision for a good week now. But on Monday Leah didn’t keep down a SINGLE FEED, and at that point we concluded that something had to be done ASAP. We took her to urgent care on Monday evening just to check on her hydration, and then met with GI and surgery on Tuesday. We agreed to go ahead with the GJ as a temporary fix to allow Leah to get her calories and fluids. The plan was that she would come in Thursday AM as usual, but on Wednesday she was still retching and vomiting and looked exhausted. Her little fontanelle was sunken and she was tired all through therapy. We decided to call her GI and see if he felt it might be worthwhile to admit her overnight to hydrate her before her procedure. That is exactly what happened, and so here we are – Leah’s almost-dilation went great, and the GJ is in. The not-so-fun part is that Leah has still been retching all afternoon, and after her feeds started she began to leak greenish fluid from the stoma, and shortly thereafter she had two episodes of vomiting greenish yellowish stuff. (You’re welcome for TMI.) So they called off her feeds for a few hours and did an x-ray to check placement of the tube. It’s in the right place, so she is just starting feeds again, this time at a slower rate. They will adjust her feeds gradually overnight, and we will see how things look in the morning.

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Oh – and how’s this for perfect timing: the Butterfly Fund posted a picture of Leah in her little piggietails and it totally went viral! The photo is nearing 475 THOUSAND likes. Holy moly!!!!!! So many people sharing LeahBug’s sweet smile! So cool and very encouraging when we are stuck in the hospital.

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We are all So Exhausted.

Home

We got home from the hospital on Friday, just in time to celebrate Leah’s independence by watching fireworks from the beach. Leah has been a handful since we got home – lots of gagging and vomiting, although we are getting a few little burps here and there. Let’s hope the burps are a good sign. We are very fussy this morning. Leah was up in the middle of the night, and then again at 5AM. This poor kid. We just want her to feel better!

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.