Reunion!

October 3, 2013

By Lisa

Not a ton to update today but I feel guilty about not updating for a few days, so here I am! BabyBug had a better day today – she got lots of sleep and hasn’t pulled out the tube yet, though it did get loose once. She had a bath earlier this afternoon and it knocked her out for a bit.

We have been seeing NICU nurses up here for the past few days; apparently it’s been quiet down there so the nurses have been “floating” here. We heard that one of the NICU nurses is moving to a different hospital after today, so we went downstairs to say goodbye, and wound up running into a handful of Leah’s other NICU friends as well. We had a nice couple of minutes showing off BabyBug’s Big Girl pictures, and then one of the nurses took a break and came upstairs to visit with Leah for a little bit. We had a nice visit and Leah was happy to see an old friend, although she seemed a little wary at first: “Are you going to mess with my tube? No? Okay. You may stay.” I can’t wait until we can bring her downstairs to wave at everybody before we take her home!

Now Mommy and Mama are having a nice quiet evening with BabyBug. We attempted tummy time, but Bug was so tired that all she really did was try to see whether pink and green taste the same. No word on the verdict. At present, Leah is snoring into Mandy’s shoulder.

I would like to state for the record, BTW, that there is absolutely nothing better than a giant babysmile. Even if it’s random and not quite social yet. It’s the best. The very best. That is all.

BabyBug keeps us on our toes

October 3, 2013

By Lisa

Well, Leah has been keeping everyone busy the past couple of days. On Tuesday she was breathing with more stridor than usual, broke out in a heat rash, spiked a fever of 99.8 degrees, AND got a random blister on her chest, all the while being Little Miss CrankyPants if anyone dared to set her down. Thankfully (which AutoCorrect changed to “Hanky Handily” – what???) the fever went down after we took off her long-sleeved sleeper. She had a chest x-ray and a nose swab and everything looks normal, but she was still having retractions and more breathing noise than we are used to, so we will be keeping eyes and ears especially wide open. The blister turned out to be from the leads – as she squirms, the gel separates and eventually the little black snap on top comes into contact with her skin and since it has a hole in it, it leaves a little suction blister when you pull it off. Mystery solved!

Yesterday Buggy’s heat rash seemed to have mellowed out a little (it’s under her diaper) but we could see little spots on her forehead and eyelids too. Sigh. Her big claim to fame yesterday was making her nurse retape or replace her repogle probably a dozen times, if not more. We have been using smaller pieces of tape because her chin is all irritated and scabby, and let’s be real – the tube loosens in the middle of the tape, so no matter how big it is, eventually she will be able to pull the tube down and out through the tape. Part of the issue is that she has discovered how very nommable her fingers are, and is on a perpetual mission to get them back into her mouth. She misses most of the time but sometimes she has a victory and gets to eat babyfingers for a bit. This gets the tape more wet than usual and loosens it, and voila! There goes the tube! At one point she was playing mean with the nurse – nursie would retape the tube and then as soon as she walked away, baby ripped it off. Like, five times in a row. Thankfully her nursie had a good sense of humor.

Mama didn’t have such a great yesterday either. I had to stay at Home Home Tuesday night for a Wednesday morning doctor appointment, and had to take the bus and train back to the hospital with my overnight bag. By the time I got to PICU I was in terrible pain. Aunti Staci arrived soon after I did, so I took a nap doubled-over in fetal position while Aunti Staci entertained Ms. Bug. It took my pain meds almost 2 hours to kick in. I was seriously ready to go to ER again and make sure I didn’t bust a suture or something. I hate going to the ER. I wish I could just, you know, keep a doctor in my pocket or something. The pain mellowed out eventually, but not before three different nurses told me I looked pale. Ugh. I’m so ready for some improvement. Here’s hoping today is a better day for all of us!

Our little dolly, all tucked in

Awesome bag made for Leah by Peggy!

Little rainbow dress

“Oh hai, Gran!”

Totally knocked out. OT has decided they don’t want her on the gel pillow anymore, so she has a little bit more freedom to squirm around on the bed. This is the result. And yes – she has somehow managed to pull off her tube and fall asleep at the same time. Nursie was prepping the new tape. Oy vey.

Mama Dramarama

September 30, 2013

By Lisa

For those of you keeping track of the Mama Drama… the answer to the question, “How did it go Saturday night?” is that I just spent five hours in the ER this afternoon/evening after spending all of yesterday feeling like I drank acid and after being sick most of last night. The surgeon did say it could take a few weeks to see a difference since I’m still healing from surgery, so I’m not writing this off as a failure – I just think maybe Saturday was a leeeettle too early. Will keep you posted, as always.

Leah had a pretty uneventful day, which I guess is the best kind of day when you’re in the ICU. She had her blood drawn this morning (boo!) and her 6PM feeding was late (hiss!). She had a visit from her cousin Beth, who came bearing awesome gifts from various family members (pics when I upload a new set!). The little Bug wore herself out with crankiness (due to the late feeding) and now she’s totally knocked out in her vibrating throne. I think Mama will follow her lead and get some early sleep tonight. Maybe.

Our sleepy girl and her piiiiiinchy cheekies

Ready to report for work duty!

September 28, 2013

By Lisa

When we first got to the NICU, we talked to various parents who had been there for several days, several weeks, and several months. I remember being in total awe of the parents who had been there for months and were still hanging on. It seemed like such a looooooong time – like something impossible. These days, we meet parents in Peds or newcomers to the PICU and they ask us how long we’ve been here… and we tell them and watch that same shock spread across their faces. That’s us now.

On a lighter note, my surgeon said I could try solid foods today (slowly and nothing too heavy), so Mandy and I took the opportunity to have a dinner-date night. We were back in the PICU before 8:30PM! Short date, but still nice.

Leah wore the most ridiculously cute outfit today. It killed me with cute. Have some pictures.

And Mommy Mandy rolls her eyes at ME?

“Guuyyyyyss! Come ooonnnnn.”

“Thank goodness that flower is gone!!”

“What do you meeeean I can’t go outside to play? I’m dressed for fun!”

Staring at our nurse and willing her to stop trying to take our blood pressure.

“Mmmmm, purple.”

“Mmmm, Mommy shoulder.”

“Mommy is so silly! Silly Mommy!”

“Oh no! It’s the Mamarazzi!”

Photos photos photos!

September 27, 2013

By Lisa

I am SO EXHAUSTED so I’m going to keep this short. BabyBug had a couple of OT sessions this week and they are working on some new skills, including cause and effect. They linked her little plastic rings to hang off the mobile and then let her pull on them so she can see that when she pulls, the mobile moves. We need to get her some more toys that react when she does something to them. She is so fascinated by it. She is playing more with the rings while she is in her vibrating seat. She still manages to get them onto her wrists but now she is trying to put them in her mouth as well. And those tiny fingers are days away from being nommed by tiny baby lips.

Not much else to update. Mama is still a bit of a zombie. Tomorrow I will try solid food for the first time since surgery. Yikes.

Sweet face

OMGCOOL

Sillie Jo!

Hi Cathy!

EmoBaby drifts off to sleep. Check out her bangles.

She loves her Mommy!

BabyBug’s first Shabbat candles! (LED FTW!)

Loopy Mama

September 25, 2013

By Lisa

Let me just get the Mama update out of the way: Surgery seemed to go well. It will still be a little while before we know whether or not it actually worked; I need to heal first and can’t just dive face-first into a giant plate of chocolate cake (as fun as that sounds). My surgery was Monday morning, and by about noon today I was ready to head out. If I didn’t have a baby to get back to I probably would have stayed one more day, but I do, so I didn’t. In case you were wondering, my meals in the hospital consisted of heavily-salted broth, decaf coffee, generic Jell-O, and vanilla soy milk. Cream of Wheat for breakfast. Very exciting. The surgeon said I can experiment with solid foods starting over the weekend but not before then. Here’s hoping for some sort of positive change!! In the mean time, let’s just scrape by with as little pain as possible so I don’t completely lose the next few days in a Percocet haze.

Not too much on the LeahBug update front. The dietitian wants to start fortifying the breast milk again, but this time it would just be pure whey protein powder and not baby formula with unpronounceable mystery ingredients. We’ll have to decide on that in the next couple of days but I think pure protein powder is better than formula, at least. Speaking of nummy protein… Leah has fiiiiinally discovered that fingers can go in mouths. She’s still working on the whole thumb-sucking arrangement, but she’s managed to nom on her fingers a few times. I knew she would catch on eventually!

I had a lot of spare time in the car today (thanks again for shlepping me around, Dad!!!) so I started tweeting at some of my favorite folks on Twitter in the hope that they would retweet and get the word out about Leah’s story and our GoFundMe page. Look who answered our call:

How freaking cool is that? Thank you, Jane Espenson and Amber Benson!!!

If you are on Twitter, will you please retweet their posts?

And finally, I certainly can’t post pictures on the blog without posting BabyBug’s sweet little face, so here you go:

We are SO CLOSE!

Almost a smile…

Sweet baby-doll! Look at that tiny tongue! We need to figure out a way to keep it inside that tiny mouth. Any suggestions, speech-path posse?

Now it is time for me to sleep. Forgive me if I don’t remember any of this in the morning. :-/

Woooooo, drug-induced post

September 23, 2013

By Lisa

Well, I didn’t die on the operating table, so that’s a start. Still totally out of it. Keep drifting off as I’m typing and making lots of errors that autocorrect can’t fix. Taking me FOREVER to write this. Oy vey. Hard to breathe, too. But I’ve heard that Leah has one of her nursie friends taking care of her, so yay.

Tick tock tick tock

September 23, 2013

By Lisa

We had a nice day today. Aunti Staci and cousin Jenna came by in the afternoon, and Uncle Ralph visited in the evening and then brought me back to RMH. Leah’s big project right now is trying to figure out how to suck her thumb. She’s getting closer and closer every day but refuses to let us show her. She wants to figure it out herself. She has also been doing extremely high leg-kicks lately. She gave her cousin Jenna a nice kick in the chin this afternoon.

I have to be up at 8AM to get ready for my surgery, which of course explains why I am up at 1:30AM making updates to the blog. Who can sleep knowing they’re going in for surgery in the morning? So I added two new “pages” to the main menu.

Is it weird that I’m more nervous for Leah than I am for myself? I’m usually there during the day and often at night to make sure the repogle behaves itself, and often I have to call the nurse in to manage a “tube incident.” I’m hoping the next few days will run smoothly for LeahBug. Gran will be there to keep her company and make sure she doesn’t pull the thing out or hack it up, both of which she does on a regular basis. We asked the charge nurse to please assign familiar faces to Leah for the next few days and nights, so hopefully that will happen. It’s not that Leah’s care is so complex right now while she’s awaiting surgery, but it is extremely particular and the consequences of messing up are pretty freaking awful. In general, but especially when we’re not there, it’s important that whoever is taking care of her knows her peculiarities and is comfortable monitoring the suction tube and recognizing when it’s clogged or stuck. BabyBug hasn’t quite learned to use her words yet. :-/

Okay. I guess I should sleep so I can wake up. Wish me luck!!

Family reunion!

September 21, 2013

By Lisa

BabyBug had a big day today! Aunti Staci and Grandpa Mannie came over in the morning, and Aunti Staci proved that she can’t be left alone with Mama Lisa’s phone. I really should have known better – any phone that winds up in her little hands generally returns to its owner with a background picture of Aunti Staci. Oy vey. Sneaki Aunti!!!

A little while after Staci and Grandpa arrived, Leah got to meet her cousins Phyllis and Roy and one of their daughters, Marci. It was a nice little reunion; Phyllis is my grandpa’s niece and they hadn’t seen each other in years and years. If you’re reading, it was absolutely awesome to see you guys and I hope you had a nice visit. Please definitely let us know next time you’ll be in our neck of the woods. And Marci, there’s a pair of bitty babyfeet waiting for you in the PICU whenever you want to come visit again. 🙂

After our cousins left, my sister and grandpa stayed to visit for a bit and then headed home as well. Shortly thereafter began another round of visits; Gran came over, followed by friends Cheryl and Gary. After they left, Gran chilled with LeahBug while Mommy graded some papers and Mama got some stuff done on the computer. Eventually things settled down and we got back to Mommy+Mama+Baby time, which is a fancy way of saying that Mama and Mommy spent a couple of hours dancing and singing and bouncing and rocking and patting and petting (and Lasix-diaper-changing) to get a BabyBug to sleep. She would fall asleep in our arms and then morph into Ms. ScrunchyFace the minute we put her down. We were finally able to get her to sleep in her bed a little earlier this evening and managed to get in one episode of “Breaking Bad.” We are trying to catch up on the current season before somebody goes and spoils it for us on Facebook like they did with the season finale of “True Blood.” Not cool!!!! We’re watching it with headphones so that our child doesn’t come out of the PICU with a little bit too much knowledge for her own good. Just finished the second episode.

Other than that, there’s not too much to report. Leah’s still hovering around 9.5 lbs and her g-tube site is looking good, though they’re still doing silver nitrate every few days, as needed, to keep the granulation tissue under control. She just needs to grow grow grow, and keep from aspirating! Mama Lisa has her surgery on Monday and will be in the hospital for a few days. I had my pre-op appointment on Friday and at some point I remarked that I had never spent a night in the hospital. Then I had to pause for a moment, think about how silly that sounded, and clarify that I had never spent a night in the hospital as a patient. Oy vey.

In other news, Leah’s nurse tonight is a Buffy fan and loves Dar Williams AND Raining Jane. Coooooooool.

And now, what you’ve really been waiting for: Pictures!

Yes, this happened.