We had another little visit to the hospital last week when Ms. Bug’s GJ tube pulled out. Earlier in the week we had begun the process of transitioning her back to g-tube feeding; we got a second pump and were gradually reducing the j feed and adding to the g feed. On Thursday the GJ came out, and Mommy and Gran put in the regular g-tube and drove Leah up to the hospital (Mama was away all day), where she was admitted in peds. The initial plan was for the GI on call (who knows Leah well and has done some of her dilations) to reinsert the GJ tube Thursday night, but Leah’s primary GI decided this would be a good chance to see whether Leah could tolerate full g-tube feeds. We stayed at the hospital for observation and increased Leah’s g-tube feed 5cc every three hours until she was at full continuous feed. And now she is back to the g-tube! Hurrah!

I think I mentioned previously that Leah caught a little cold last weekend. The good news is that she doesn’t seem to have pneumonia yet. The bad news is that the cold is thickening her secretions and making her gagging and retching much worse. She also developed a bit of an infection in her g-tube stoma, probably around one of the sutures, and the docs put her on antibiotics. On Wednesday night, we had what we might call an epic poopsplosion that reset the scales for epic poopsplosions. Leah was in her jumperoo and Mandy glanced over and noticed that she was awwwwwfully happy. Why was the baby so happy? Well, the antibiotics had caused a giant poopsplosion that had leaked out of her diaper and onto the floor, and Ms. Bug was kicking her feet around in it and having So. Much. Fun. We did not have so much fun cleaning it up, but we were still laughing pretty hysterically through the whole ordeal. Ms. Leah went straight to the bath.

SO – when we got to the hospital on Thursday, we let them know of this incident and they decided they wanted a stool sample since they continued to be loose on Thursday. They sent us home Friday, but on Saturday they called us back to tell us that the sample tested positive for c-diff. Oh boy. We have had a pretty confusing couple of days. They said it wasn’t clear whether she had an actual infection or was just colonized, as many hospital frequent fliers are. I left it up to the GI on call to decide whether or not to treat, and he said she should go forward with the specific antibiotics that kill this bacteria. But her regular GI called me yesterday and told us to stop the antibiotics – he did not feel it was appropriate to treat it at this time because it didn’t sound like a full-blown infection. I guess this strain is particularly resistant to antibiotics, so when you go on antibiotics, the good bacteria get killed and this one can get stronger and take over, causing infection and lots and lots of icky poopsplosions. But the antibiotic can itself cause the same reaction, and that’s what the GI thinks is happening. So he wants to wait a couple of days and see if it clears up on its own before attacking her body with 14 days of strong 4x-a-day antibiotics.

In brighter news, we have started mixing Liquid Hope into Leah’s breast milk feeds. This was a compromise with the doctors because it is very difficult to do blended feeds with a j-tube, and this formula is made completely of whole organic foods. She seems to be tolerating it well! We actually won a case of it in a Facebook drawing by the manufacturer, which is super-awesome and helps us out a lot. The best news is that they are coming out with a pediatric formula, which means we would actually be able to feed it to her without diluting it. Right now there is too much protein so we can only give her a small amount each day. At some point soon we are going to transition her to a fully blended diet, but it will still be nice to have the Liquid Hope pediatric formula when we are out and about and the logistics don’t allow for a blended feed.

I’m working on the next round of photos (LOL – the month of July), but in the mean time, here’s an exciting video. 🙂

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:

Baby Party II

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!

Deep conversation.

How cute is this bow?

“Fan me with palm fronds.”

“Giddyup Mama!”

“DOGGIE!!!”

“Teehee. It’s a doggie.”

Another catch-up post – stories along with their corresponding photos.

The many faces of physical therapy: Pissy Baby and Proud Baby

The many faces of physical therapy: Flying Baby and Melty Baby

Dinner at our cousins BB&E’s house – random sweet babyfaces

Leah got this awesome blanket from Lovies 4 Littles – I had forgotten that I requested one, and then suddenly it showed up just in time for Leah’s birthday and Mother’s Day. SO awesome!!!

Mandy’s brother and his family came over to visit and celebrate a belated BabyBugBirthday and an early Mother’s Day with Gran.

Leah is doing a better and better job at sitting up!

Sitting at the table like a big girl!

Our first Mother’s Day outside the hospital! Our whole family met up – grandparents, siblings, parents, a few cousins, my great-aunt and aunt – and celebrated together. Love the family!

We love Grandpa Bill! Leah was throwing up the entire ride out to brunch (hence the shoulder diaper pictured in nearly every photo) but Grandpa Bill makes it all better.

After brunch, Mama, Mommy and Baby went for a walk on the beach! Leah LOVES the wind in her hair.

Practicing our Dainty Ballerina moves.

Practicing our Zombie Ballerina moves.

Practicing our Melty Ballerina moves. What an exhausting Mother’s Day!

Modeling our awesome new blanket.

One of Leah’s Instagram friends made this sweet collage for her birthday. <3

We love our Aunti Staci. Her hair is delicious.

Sharing a moment with Jeepers Creepers. He is her guard-cat lately. I’m thinking he watches out for her because he REALLY likes her toys and vibrating chairs.

Another moment with Jeepers.

Just because. Because this face.

This face again.

And then, you know, THIS face. PONY FACE.

PonyGram

Proud Baby!

Mmmmm. It tastes blue.

Mandy sings in a choir, and Leah and I spent the afternoon at her dress rehearsal. Leah was SO good during the actual show – I only had to take her out one time, and she really wasn’t actually making noise, but it was during the “In Memoriam” section so I didn’t want to risk it. She slept through the rest of the show.

My favorite moment during the dress rehearsal happened while Leah was watching the ASL interpreter. She was hypnotized by the movement of the signing, and you could tell she was fascinated – until somebody walked by with a bunch of colored balloons. Then the ASL interpreter didn’t exist. Leah tracked those balloons all the way up the aisle and out the back door.

This happened twice. At least we know the kid has great visual tracking.

Sweetie Pie.

Leah’s GI ordered an esophagram because Leah had been experiencing so much vomiting in recent weeks – it was getting pretty ridiculous. And messy. So he ordered an esophagram. This sweet baby fell asleep on the x-ray table. Precious doll.

The next day we started hearing the gurgling that signaled to us that her diaphragmatic hernia might be back. If only it had started on this day, we could have simply watched the contrast as it moved further down into her digestive tract. But because they were only looking at the esophagus, they stopped when the contrast left her stomach, and it would be another few weeks before we had confirmation of what we were dealing with.

I think I’ve already filled you in on the circumstances surrounding the return of her hernia. I was convinced from day one that it was back due to the gurgling, and shared my concerns with Mandy when she got home. It didn’t take much convincing – it was obvious that something was out of place; you could hear rumbling and gurgling in the kid’s chest. That shouldn’t be there. It took another week or so before we were able to get this confirmed by her doctors. The esophagram was on a Monday. The gurgling started on Tuesday. Leah’s checkup with her primary was on Thursday, at which point they did a chest x-ray. That’s when they found the bit of pneumonia brewing, but did not see the hernia. We saw her GI the following Tuesday, and they were able to get her in for an upper GI study that Thursday. The radiologist saw the hernia before he even started with the contrast (which he did ultimately do so he could get better pictures). He looked at the very first image and said, “There it is.” A week and a day later Leah was in the OR having her second hernia repair. And I think I’m repeating prior blogs at this point, so I’ll defer to those longer posts and carry on with the photoblasting.

Leah got this sweet ladybug toy from the Awesome Kids Foundation. Thank you! She loves it!

Another awesome and sweet gift from The Butterfly Fund. Such a nice surprise to receive this Pillow Pet from Leah’s wish list. I swear, Leah knew that it was for her as soon as I took it out of the box. She actually smiled at it from across the room. I’ve never seen her respond so immediately and without prompting.

I couldn’t resist making a little collage.

Another kitty moment. A few days later, our other cat, Lobo, somehow managed to sneak into Leah’s room. He was on the rocking chair in there and Mandy couldn’t get him to move – so she put Leah down near him and let Leah grab at his fur and ears – basically sicced the baby on the cat. It actually took a significant chunk of time before Lobo got annoyed enough to leave the room. I’m surprised and impressed at his endurance. It’s not that Leah actually hurts the kitties – but she does like to grab hair, and she does like to grab at the root. For the kitties this translates to squeezing handfuls of fur over and over again.

Leah loves her new chair, a birthday present from Gran! Can’t remember if we’ve posted a pic before. Her physical therapist recommended it when I asked about a chair that she could use so that she could spent more time sitting up instead of reclining in her bouncy chair, which is, you know, kinda for babies. 😉 In this chair Leah can sit upright and play with toys on the tray in front of her.

This is Leah’s new favorite chew toy. “What, Mama? Don’t bite my tubie? Don’t do THIS?”

We typically don’t let Leah watch television, but our favorite band in the whole wide world, Raining Jane, was playing with Jason Mraz on American Idol, so we had to let Leah watch with us when we watched the recording.

Raining Jane received the Foot-Nom of Approval. Congrats, ladies!

Yeah. It’s a problem. But it’s better than her pulling out the g-tube itself, which we work soooooo hard to avoid.

Mama-Baby Sillie Selfie Time!

Goofy Baby, Outfit #2 (seriously, this kid was projectile-vomiting multiple times a day for days on end.)

Goofy Baby, Outfit #3! Mommy was out of town at a work conference so Aunti Staci stayed over to help, and help is exactly what we needed, because Leah required a minimum of three costume changes on this day. Poor spewing kiddo.

Back on the table for the upper GI. Yucky ducky radioactive goo in our belly!

Guard-kitty stationed at his vibrating chair – and yeah, okay, also guarding the baby in the chair.

We got to the point where we had to just keep a bib on her to avoid going through her whole wardrobe with all of the spewing episodes. “But are you for real with this flower headband???”

Hey, sitting AND holding the necklace with both hands? That takes coordination!

Aaaaand that’s the month of May!

ALMOST!

I’ll do a separate post for LeahBug’s May 31 baby naming / birthday party – stay tuned!