Can’t seem to stay away

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. ūüôā

An actual update

Since we last wrote…

Leah got out of the hospital on July 29. I’m pretty sure my favorite non-Buggy moment in the hospital was from when the GI was in the room talking with me about options going forward. Remember how I said the stuff Leah was spitting up was absolutely foul? The doctors didn’t seem to grasp just how vile it was and I kept trying to find the most descriptive words possible but it didn’t seem to be getting through. At some point the GI doc¬†was concerned that there might be¬†milk in the tube and offhandedly said to the nurse, “Is it milk? Smell it.” AND SHE SAID NO. HAHAHA. I don’t remember which one of us invited him to smell it himself but he did, and he maintained¬†an impressive poker face. Absolutely classic. I would have said no too! She knew what it smelled like. We all did. It was awful! Why put yourself through that deliberately? I was seriously still replaying the scene and giggling to myself for days. “Smell it.” “No!” I’m smiling as I type the story. I hope at least one of you finds the humor in this situation. I swear it wasn’t hospital delirium.

This was my other favorite moment:

SO – yes, Leah came home July 29. She continued to spew yuckies for maybe a week,¬†and then it seemed to be tapering down – but then it got bad again. At this point she doesn’t even always bring something up – just chokes and gags and retches. It’s so frustrating to watch, and I remember how it feels to throw up multiple times every day. It’s exhausting. Exhausting is not even a strong enough word. This kid goes through so much.

On the bright side, here are some exciting things LeahBug has done since she got out of the hospital, in chronological order:

-Sent postcards to Cool Aunti Staci at camp.

-Learned to bang objects together – yay!!!

-Is consistently bearing weight on her feet when we hold her hands! She gets the “LOOK WHAT I’M DOING! I’M SO PROUD OF ME!” face and laughs, just like she did when she learned to sit. It’s so precious you can’t help but laugh with her.

-Listened to her Cool Auntie Erin’s band’s EP in the car.

-Wished a happy birthday to a couple of¬†SuperBaby friends and a “welcome to the world” to a SuperBaby friend who finally busted out of the hospital for the first time¬†since his birth 10 months ago.

-FaceTimed with her six-year-old second cousin for the first time.

-Had a play date with her best friendcousin at the Farmer’s Market.

-Started getting a blended-food formula through her j-tube in addition to her breast milk.

-Went to the Griffith Observatory and slept through the planetarium movie.

-Danced to the new Jason Mraz and Raining Jane album.

-Attended her very first birthday party for kids.

-Served as a Flower Baby in the beautiful wedding of some dear friends to whom Leah led us just before she was born.

-Became a toddler.

-Caught a cold.

That pretty much catches us up to today, which was another long day up at the hospital complex for doctor visits. In addition to what appears to be a cold, Leah also seems to have a bit of an infection of some sort at her g-tube site. They are putting her on antibiotics, which of course turned out to be a variety that can’t be fed through the g-tube, which we didn’t know until we got home. Tomorrow will involve some phone calls… Leah is also getting a second feeding pump and we are going to make an attempt to transition her gradually from j¬†feeds to g¬†feeds. Wish us luck – getting Leah back on g-tube feeds will put us back on the right track moving forward.

Re: toddlerhood… up to this point Leah has generally only really cried when something was physically uncomfortable or painful. But I’m pretty sure that she realized the effectiveness of The Wail while in the hospital, and now we are getting that whenever she gets upset about anything. She is still a very cheerful baby, but in addition to The Wails she has also been whining for long stretches each day. It’s very frustrating because it’s clear she isn’t comfortable but we don’t know what to do for her – mostly it seems like she is a) hot because of the weather and we do what we can to mitigate that, or b) tired and yet adamantly refusing to nap (see video above for a highly-subdued version). The latter is where she has really entered into the realm of toddlerhood, and it contributes to the former because she works herself up into fevers from crying.

In brighter news, would you believe her viral picture reached 1.4 million “likes”? It seems to be tapering off now.

More pictures coming soon.

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 Рthe 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!

When it’s cold outside, I’ve got the month of May…

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

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

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

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

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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!!!

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

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

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Sitting at the table like a big girl!

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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!

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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.

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

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Practicing our Dainty Ballerina moves.

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Practicing our Zombie Ballerina moves.

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

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Modeling our awesome new blanket.

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

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We love our Aunti Staci. Her hair is delicious.

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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.

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Another moment with Jeepers.

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Just because. Because this face.


This face again.

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

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PonyGram

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Proud Baby!

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Mmmmm. It tastes blue.

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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.

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Sweetie Pie.

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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.

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

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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.

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I couldn’t resist making a little collage.

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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.

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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. ūüėČ In this chair Leah can sit upright and play with toys on the tray in front of her.

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

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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.

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

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

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Mama-Baby Sillie Selfie Time!

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

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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.

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

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

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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???”

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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!

Another update!

Leah came home Saturday evening. PICU said they could transfer her to Peds for one more night, but surgery said she was good to go home if we wanted. So they gave us the choice. We felt home was a safer option than Peds, although I would have preferred to stay at Ronald McDonald House for one more night in case we had any issues. Leah was great on Sunday morning, but had a really rough afternoon – to the point where I was kind of wishing PICU had offered to keep her there for one more night instead of bouncing her over to the floor. The poor kid was so uncomfortable, and worked herself up into a fever of 100.9 (I did get one reading of 101.9 in one ear but it couldn’t be replicated and I think it was a mistake – maybe she was lying down on that side or something). Thankfully by the evening she felt a little bit better. But by last night, she was crying in her sleep in random spurts throughout the night. Poor little dear.

Both Leah and Mama had appointments today – Mama got physical therapy and a shot for thumb/wrist pain, and Leah got a spoonful of sweet potato. Yay for feeding OT! Mama Lisa almost passed out after her shot. It serves me right for not eating beforehand – I was fine after my other two shots (back and other wrist), but as you might remember from last summer, I have a particular sensitivity to both not eating enough (hence the ER) and being in hot weather. It was also a little bit of insta-karma. The doctor had asked if I felt light-headed and I said, “Do people actually faint from this??” He joked that it was mostly the big macho men who fainted from the pain, and I laughed with him and said that women are used to dealing with more. Not 30 seconds later I started to black out. They had to lay me down and give me juice so I wouldn’t faint completely. Be nice, Mama! Be nice!

Leah had a great evening, and was super-giggly and silly. I posted a 2-second video on her Facebook, but I’ll post a longer one once I get a chance to edit it. We are going to give developmental occupational therapy a shot tomorrow and see how it goes. Pictures soon. Really.

The quickest update

Leah’s hernia is back and will require further surgery. An upper GI study on Thursday confirmed that sometimes the Mamas just know. That is all. More news when we have it. Now, back to catching you up on the past three weeks!

Yikes

Wow – this might be a record for length between posts! I have been working on a photo post and trying to find time to write about Leah’s birthday and how the rest of her month has gone. I will do that some time this week, but in the mean time let me just say that this month has been a challenge. We had a terrible heat wave, and since Leah doesn’t regulate her body temperature well and we don’t have a very good cooling system, the days were long and difficult, with lots of tears and fussies and fevers. And vomit. So. Much. Vomit. This poor child has been throwing up almost daily for weeks now. We think the problem is that she is swallowing so much air for a variety of reasons (including hunger noms, tastes, teething noms, and just generally being a baby). Since she doesn’t burp well and has reflux, the air tries to come out in the form of retching, and since she frequently has food in her stomach due to slow feeds, she winds up throwing up as well. I have been trying to speed up her feeds to her pre-stricture rate, and that has helped a little bit. If I can get to her in time to vent her stomach via the g-tube, that can often keep her from vomiting, or at least from throwing up too many times, if I don’t make it in time. Still, it has been a big problem.

We have also had a challenging month because Mama got sick and then baby got sick (I keep telling myself we must have caught it from the same person because I would feel so bad if she got sick because of me). She really didn’t have that difficult a time of having a little cold, but we took her in for a chest x-ray for another reason (discussed below) and were informed that she has pneumonia – and it looks like community-acquired pneumonia and not aspiration pneumonia. So now we know: even a tiny, not-too-terrible cold can lead to pneumonia for our sweet bug. All the more reason to be extra cautious with germies. She is on antibiotics for ten days to fight the infection and we hope hope hope it doesn’t escalate.

Aaaand that leads me to my final reason for this month’s difficulties: we have a horrible sneaking suspicion that Leah may be having a recurrence of her diaphragmatic hernia. I hope we are wrong, but she has been straining a lot, has been having very few dirty diapers, and – most disturbingly – is experiencing a return of her bowel gurgling, a symptom we only ever observed when she had her hernia. The problem is not so much that her bowel is gurgling and rumbling; I understand that sometimes babies’ bellies can make noise (but every day? All day?). The problem is that if I put a finger on her chest – above armpit level – I can feel the gurgling under my finger. I’m no doctor, but that doesn’t seem right. We took her to her 12-month check-up last week and they ordered an x-ray, but of course that was the one day last week that she was not experiencing gurgles. Things can shift around with a hernia, and I suppose it is possible that it didn’t show up on the x-ray for that reason. (As noted above, what did show up on the x-ray was the pneumonia). And again, of course we could be completely wrong about this – but I can’t think of any other reasons why we would be hearing bowel-like rumbling coming from high in her chest. No good reasons, anyway. No reasons that wouldn’t give me a panic attack. So until someone proves me wrong, I’m going with the hernia theory. We see her GI doctor tomorrow (we were supposed to see him last week as well but he was sick). News as it comes.