We’re still standing…

The past couple of weeks have been… OY VEY.

Just a quick summary:

– As you know, we spent Leah’s 11-monthiversary in urgent care and the ER. Good times. The general consensus was that she had a bit of atelectasis (lung not opening all the way) following her April 3 procedure.

– At Leah’s last dilation, on April 17, the doctor was pleased to report that her esophagus was a tiny bit more open than usual. He was able to pass the scope through the stricture prior to dilating, and estimated that it was at about 5mm, which is better than the 2-3mm it had been at before. He did see some white calcification spots that he attributed to the steroid injection the week before. They will do another injection on Thursday.

So, now for the OY VEY. Leah has been super, super fussy for the past week or so. Starting the day after her last dilation she started running a low-grade temperature on and off throughout the day, and she was having a hard time sleeping. She would fight off sleeping for so long that she would get overtired and cry even harder because she was too tired to sleep. Oy vey! She does fine at night – it’s mostly during the day that this was happening, and I think the hot weather has been a big part of it. She has also been spitting up here and there, and by Monday had added some projectile vomiting to the mix. She threw up 3 times on Monday (April 21), and was gagging for a great deal of the day. On Tuesday she gagged on and off throughout the day. On Tuesday evening I called the advice nurse to ask if maybe we should give her some Pedialyte to replace the lost fluids from throwing up, since she seemed very fussy. The advice nurse’s general protocol with a kid as complicated as Leah is to tell us to bring her into the ER – but it didn’t seem appropriate under the circumstances (and who wants to expose her to that if it’s not necessary?), so I kept trying to find a way to talk to somebody who knew Leah. I got SUPER lucky and her primary care doctor happened to be on the floor in peds Tuesday night, so he was able to call me back and talk with me about what was going on. We decided to keep an eye on her and give some Pedialyte if she continued to lose fluids.

On Wednesday Leah was in great spirits, and was a tiny bit gaggy but didn’t throw up at all, though she did have a slight fever as she had in the days before. By Thursday morning, the poor kid could not stop throwing up. We took her up to the hospital for some appointments, and she had her tympanogram in preparation for her ABR next week (if it’s still happening!!), but after the seventh episode, I made an executive decision and cancelled her speech appointment and made a beeline for the pediatrics clinic. My dad was with us and got there a little bit early to make an appointment with them.

Leah saw another new doctor who isn’t familiar with her case, but he reviewed her notes and spoke with one of the gastro docs who has done some of her dilations, and their hypothesis is that our BabyBug has… a baby bug. They put her on Pedialyte for 24 hours and made a follow up appointment for the next day. By the time we got home, her temp was 101.9, so I gave her some Tylenol as well. She seemed to do okay on the Pedialyte, and only threw up once, on Friday morning (though we saw a lot of gagging). We went back for the follow-up appointment and the doc seemed to waffle on the idea of a bug since Leah has only been vomiting and hasn’t had problems, well, on the other end. They did a chest x-ray and her lungs look fine, so despite the waffling he returned to his original conclusion that it’s likely a bug.

Of course, nervous Mama is now asking around to see what the symptoms of esophageal perforation are, since this all started when she got home from her dilation, but calmer Mommy suggested maybe she picked up a bug in the hospital last Thursday. We will ask about the possibility of a tear, but I think her fevers would be higher and she would be in more discomfort. It’s more likely she picked something up in the hospital. For the time being, Leah is on reduced feeds on a continuous basis. We will watch her over the weekend and see how she tolerates increased feeds. We’ll see how to proceed come Monday – Leah has two procedures scheduled this week, one under twilight sedation and one under general, and I’m thinking they won’t be doing either if she is still sick.

I’ll take a baby bug over a surgical complication, but I wish there was a way to be sure that’s what we’re dealing with.

I’ll post photos soon. Our bug is getting better and better at sitting up for a few seconds without tipping over! There will be video coming soon as well. 🙂

Playing catch-up

Whew, what a week!

Leah had her surgery one week ago, and came home Saturday morning. The procedure went well, and everything is tucked back into place. The hernia was definitely a congenital defect, and we were told it was quite large – but they were still able to repair it laparoscopically, thankfully. There was another small defect they found that did not need to be repaired – I can’t remember what the surgeon called it.

The docs had initially told us to anticipate a 3-5 day hospital stay, but after the surgery her surgeons felt it had gone smoothly enough that if she did well with overnight observation she could go home the following day. Leah spent nearly the entire day sleeping, and was super-fussy when she was awake. We got a few weak smiles out of her, but she was mostly just wanting to sleep. She got pretty puffy by Thursday evening, and they had to give her an extra dose of Lasix (she hadn’t gotten her meds before the surgery Thursday morning). Leah spent most of Friday sleeping as well, but when she was awake she went back and forth between moderately cheerful when still and red-faced and screaming when moved.

On the bright side, by late Friday morning, Leah’s numbers were good enough that the surgeons felt comfortable discharging her as soon as her pain was under control. Since she is tube-fed and has oxygen at home, there wasn’t a whole lot they could do for her in the hospital environment that we couldn’t do at home, aside from administering IV pain meds. So once she was able to transition from IV morphine to “oral” (g-tube) hydrocodone and acetaminophen, she was good to go. We wound up leaving the PICU around 6:30PM or so, but not before delivering a pie to the nice food service lady who brings the evening meals. It was pretty funny. A few days before Thanksgiving, Mandy’s brother had told her he would bring her a pie from his work, and then we were discharged before he could do it. She forgot ages ago, but he remembered that unsliced promise. When he came to the hospital Thursday night, he came bearing cookies for the nurses (because he’s cool like that), and yes, a PIE.

That wasn’t the only special delivery we made in PICU on Friday! We also brought up the blankets that Binkeez for Comfort sent for the kids of PICU. They each have a tag that says something to the effect of, “We are officially Binkeez Buddies! Love, Leah Valerie.” Pretty cute. We delivered those to the child life specialist, who will distribute them as needed. It was cool to be able to do something nice for the PICU kids. I hear the NICU babies get all the attention.

After our special deliveries, we went back to the Ronald McDonald House for the night so we could be near the hospital in case there were any issues. Thankfully there were no big issues overnight. Leah was still in a whole lot of pain, which is understandable, because abdominal surgery is pretty miserable even with just laparoscopic incisions. She managed to get through the night with only one set of heart-wrenching screams at about 4AM when Mandy had to change her diaper.

The hernia repair wasn’t Leah’s only procedure on Thursday. They also did another esophageal dilation with steroid injeciton. Leah’s stricture continues its refusal to cooperate. The docs were able to dilate up to 12mm on Thursday, but unfortunately, at the outset the stricture had already tightened to about 2-3mm, so the odds are pretty high that Thursday’s 12mm will be 2mm again by the next procedure. They have said they will keep dilating biweekly for three months along with the steroid injection, and if that doesn’t work then we are likely looking at another major surgical repair. We’ve been told there is about a 50% chance that the dilations will work – which means there’s also a 50% chance that they won’t. (Hey look, I did math!) To me these are not good numbers. I do not like them, Sam I am. (Seriously. Smile and nod. Very little sleep over the past few days.) It’s particularly disconcerting because we’re told the procedure they would recommend if they have to repair the esophagus only has about a 50% chance of success itself. More unpleasant numbers!

So yes – we came home Saturday after a shorter-than-anticipated stay at the Ronald McDonald House and PICU. We don’t love being at the hospital, but since we had to be there, it was really nice to see friendly and familiar faces. Leah had lots of visits from her PICU nursie buddies and other PICU folks, and in the cafeteria on Friday morning I ran into a family we knew from NICU last summer. Their little girl had surgery on Friday and it sounds like it went well, so yay. We saw some familiar faces at Ronald McDonald House, too, although we didn’t get to see everybody.

We left Ronald McDonald House around 9:30AM on Saturday, aided by our dear friend J, who came to our rescue and helped us shlep 7 days’ worth of packed suitcases back to our house. Had we known we would only be there for three nights we could have packed a heck of a lot less!!! But it’s okay – I’m just glad we got home early. Leah was in surprisingly good spirits for the rest of the day. You could tell that she was uncomfortable, but we were able to hold her, and she took a nice long nap in her Gran’s arms. We gave her a little sponge bath, washed her hair, and even let her sit in her special high chair at the dinner table. She had her moments of owie-ness, but overall she had a pretty good day, and continued to improve a little bit each day. She was a tiny, tiny bit wheezy as well, and although it has improved, it’s still a little worse than usual.

I wrote the first draft of this blog a few days ago. Since then, we’ve had a bit of an adventure. Leah has been hiccuping and gagging more than usual all week. I have been communicating with her surgical NP to keep her apprised of Leah’s status, but it seems those symptoms are not too abnormal considering that she just had surgery on her diaphragm. However, on Monday and Tuesday Leah started spitting up a little bit, and on Tuesday morning she had spit-up on her face and outfit when we woke up. Later in the day she spiked a little bit of a fever – it was up to about 100.6 when we gave her Tylenol around 2:15PM, and went up to 100.9 before starting to come back down. Not too terrible, I know, but considering the recent surgery and the even more recent spit-ups, we decided we might as well have her checked out. I had mentioned the fever to her NP and asked when we should bring her in to see her primary care doc, and once she knew Leah had a fever she said now would be a good time to check in with primary care. We made an appointment for Wednesday afternoon, but when Leah would not calm down and her fever started going up instead of down, we decided we wouldn’t wait and would just bring her in to urgent care. We left the house around 3:30 or so, and got to urgent care a little over an hour later. They made an appointment for her at 5PM, the first appointment available for after-hours urgent care.

During her appointment we got to have the fun new experience of introducing Leah to a doctor who was not at all familiar with her history. The conversation started with, “What are the little stickers on her cheeks?” and ended 11 months later with a referral to radiology for a chest x-ray to check for potential aspiration. We trekked down to the next block for her x-ray and then trekked back to await results. The doc came in a while later and told us the radiologist had seen something small and subtle on the x-ray and they wanted to run it by surgery – they took her off of feeding at that point in case she was aspirating due to reflux. Her last feed had ended around 4:30 or 5 and by now it was 6:30 and she was starting to get hungry, but he advised that we wait until we heard from surgery. He observed that everyone he talked to seemed to be very familiar with Leah. Yep. She goes way back with these folks. Maybe half an hour later he said surgery wanted to examine her, which meant we had to walk across the street and bring Leah to the emergency room, since that’s the means by which a person can see surgery after their clinic hours. Thus began the second half of our BabyBug 11-Month-Birthday Adventure. I think we all know that 90% of the time in the ER is spent waiting, waiting, waiting. So here’s how the evening went:

Wait.

Speak with surgical resident, who IS, thankfully, quite familiar with Leah’s case. (Not that there was anything wrong with the doctor we saw at the peds clinic – he was very nice. It’s just a lot easier working with docs who know Leah’s history since it requires so much explanation.) He had not had a chance to review the x-ray results but wanted to examine her. She sounded fine. Yay.

Wait. Wait. Wait.

Surgical resident comes back with the ER doc on duty and tells us that radiology’s interpretation of the x-ray was possible aspiration, possible atelectasis (in which the lungs don’t open all the way). It is a pretty common complication after intubation, although they see it mostly in adults. They don’t want to resume feeds until they have a chance to speak with the attending.

Wait.

Get frustrated over neighbor’s IV, which beeps for 10 minutes. The staff do not seem to notice. Someone finally turns it off. I thank him. Several minutes later it starts beeping again. *facepalm*

Wait.

Meet our cool nurse with shiny butterfly earrings. Surgery wants her to draw blood for a CBC but she thinks maybe an IV might be better just in case they decide to admit her. I tell her Leah’s veins pose a challenge. She goes to find the charge nurse, who is reportedly excellent at placing IVs.

Wait.

A guy comes in and says he’s going to get the same charge nurse.

Wait.

At some point, yet another guy comes in, sees that the baby is sleeping, and leaves.

Wait.

The nurse returns. Apparently guy #2, who didn’t identify himself, was the charge nurse but didn’t want to place the IV because the baby is sleeping. HELLO. PLACE THE IV. We have been waiting an hour for this lab. The sooner she gets blood drawn, the sooner we can leave.

Wait.

Attempt to shield my sleeping baby’s ears from the barrage of profanities that streams from a room down the hall, where a patient has decided he prefers the previous nurse and would like the current nurse to leave. It’s not the ER if there isn’t a screaming patient in another room and what appears to be a homeless guy sleeping it off on a gurney down the hall. Said homeless guy is the one with the beeping IV. The evening is complete.

Wait.

Nursie with shiny butterfly earrings (Leah is a big fan of these) gives up on the idea of an IV and draws blood herself. Baby has a history of poor bleeding from heel pricks so she draws from the fingers instead. It takes so long to get enough blood that the blood clots before it reaches the lab. Lab sends it back. They have to draw again. This time they get it from the heel. Now we know – her heel gives blood again. Woo.

Wait.

Wait.

Wait some more.

Surgery was in the OR but they finally come down and tell us the labs are good and we can go home, but we should space out her feeds to prevent aspiration, and watch for any more fever or vomiting. We can resume feeds. He goes out to prepare discharge papers.

Wait.

Someone comes into our room. Ready? Nope – he just wants something from the cabinet.

Someone else comes into our room. Now? Nope – she wants something from the cabinet too. Suddenly our room is very popular. Someone else starts to come into our room but changes her mind.

FINALLY, we get our discharge papers and leave. It’s close to midnight.

Soooooo. That’s how we spent Leah’s 11-month birthday – with an 8.5-hour trip to the hospital. I’m glad that they didn’t keep her overnight, but it was still a very exhausting day. It sounds like they do think she’s experiencing atelectasis, and they said it is something that should self-resolve over time. Leah did pretty well yesterday, but today she had a projectile vomiting episode in the morning. The previous episodes had been just regular baby spit-up, but this was full-on spewing of her feed. My only consolation is that maybe, possibly, perhaps this means the esophagus is still open. Please?

I know I already posted this on Facebook, but I just want to say that we are SO grateful to all of you for your sweet messages, comments, thoughts, prayers and encouragement this past week (this past year, really, but you know what I mean). It’s not easy to see that beautiful, sweet, tiny face all scrunched up in pain. It really does help us to know that people are thinking about her and sending positive energy in her direction.

In thanks, I shall shower you with photos. Behold, photos!

<3

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“Yeah? You got a problem?”

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This is the face of a sleepy Bug.

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A few minutes later…

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Our little rock star at therapy! I wish they still made this toy – the one they make now has different songs and they aren’t as fun.

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“Just a baby eating her toes. Nothing to see here, people. Move it along.”

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Selfie time! Duck face for Aunti Staci, sparrow face for cousin Anya.

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The sweetest baby I ever did see. Also… eyelashes.

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Watching Cool Auntie Erin’s band practice. Or, you know… sleeping through Cool Auntie Erin’s band practice.

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And to think, mornings used to have no redeeming qualities.

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Somehow the baby grew a cat nose and whiskers.

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“Timber!”

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A brief moment of interest…

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…followed by a competition for Mommy’s attention.

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Oh great – now everybody has to get involved.

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Family selfies! “Mommy, you are SO WEIRD.”

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“Mommy, where did your tongue go???”

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“You see what I put up with? These two…”

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Reading the book that somebody bought from LeahBug’s wishlist. There was no name on the packing slip, so if you’re reading this, THANK YOU!

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It’s a no-dresses day! Time for our friend B’s birthday party.

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BabyBug chilling with Auntie Faithie.

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Tuning out the party.

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A day at the park means we wear a hat! Leah says: “HAT. DO NOT WANT.”

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“Are you kidding me with this thing?”

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“MOMMY! WHAT DID YOU DO TO TIGGER? Don’t worry Tigger! I’ll save you!”

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Raspberries

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Happy Bug

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She’s just too cute.

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That smile!

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BabyBug Beak. She has been making this silly face since her NICU days.

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A screenshot of my very favorite moment from the swinging video. That is pure baby joy!

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Wheeeee!

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MamaBug and BabyBug

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MamaBug’s nails provided entertainment for the whole ride to RMH. Good times.

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“They’re doing WHAT to my diaphragm tomorrow?”

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“Is there any chance I can talk them out of this?”

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“Oh well. Let’s play!”

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Silly baby

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SuperBug all ready to fly off to surgery. This picture brought us incredible support during Leah’s surgery. The Special Miracles – Down Syndrome page shared her photo and roughly 18,500 people liked it on their page. A little over 800 people shared it on their own walls. Another 13,700 saw the picture through Leah’s Facebook page. The Butterfly Fund, the org that so generously shared Leah’s wishlist, also posted it and over 600 people liked it. This means that at minimum, almost 33,000 people saw the photo, not counting the friends of the folks who shared it. It received well over 1,000 comments wishing Leah good luck and sending her positive thoughts and prayers. These numbers just completely blew us away. We’re grateful for the continued support of our family, friends and community, and also amazed at how many people cared enough to take a moment out of their day to send good wishes to a baby they don’t even know. The constant flow of positive energy really kept me sane during Leah’s surgery and later when she was sleeping off the pain. I know she felt it too.

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Mom’s Superhero!

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This cape was made especially for LeahBug by Tiny Superheroes and was sponsored by one of Leah’s friends on Facebook who also has chronic health problems. Leah is definitely a tiny superhero!

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Several friends and family members sent us sweet pictures of themselves in their Team LeahBug shirts on Thursday. Pretty sure little Josie’s was the cutest one. 🙂

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Auntie Z’s little boy Ry Ry made this special gift for LeahBug in day care!

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LeahBug does love her toes.

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Just a girl and her GloWorm.

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Puckering up. She’s been doing this a lot lately. I think it’s because I make this face at her so often.

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We have everything we need – Binkeez, GloWorm and toes. Armed and ready for surgery!

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Leah was VERY fussy and uncomfortable after the procedure, but after a while she finally fell asleep. Poor bunny. They told me to try holding her but I felt like that made things worse after a few minutes, so I put her back and let her rest in bed.

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Gran and Bug

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Always with the wires!

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Saturday morning, after a night of morphine and sleep.

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Leaving PICU at last! Bugs for dinner!

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Toes. I love it when her tiny feet just randomly poke out of the stroller.

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Do we look cool or what? They let us take her home in the gown so she wouldn’t have to have tight clothes against her sutures. We added some flair.

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Uncomfy, but managing a smile for Mama nonetheless. Our little superhero.