Keepin' on...

No weight gain yesterday.

Although my sweet nurse has evidently caught my "optimistic" bug and noted that we DID gain weight yesterday...

.01kg.

From 9.46 to 9.47.

*ahem*

While I'm optimistic... counting that as a "gain" is a stretch, even for me!

Although, then she said, "Well, at least she didn't LOSE weight."

So yes, I'll totally give her that!

Keepin' on the happy -thoughts train in Annabelle's room! Mommy likes!

We changed formula to the high calories on feed 3 of 4 yesterday. She threw up (a lot...) twice.

On feed 4, we slowed down the rate (feeding over 1 1/2 hours instead of 1... YUCK) and while she gagged both last night and this morning, no actual vomit. I also had to stop the feeds three times today to keep her from throwing up, so really, it was over close to 2 hours when you count the pause times.

We don't anticipate seeing an immediate change in weight. But hopefully soon.

She peed better yesterday too... we're gonna give the higher lasix dose today then go back to the lesser amount tomorrow.

Please pray for my "big" girls. I talked to them last night and *sigh*. It's hard having Mommy away, and I think a little scary considering how LONG it lasted originally. My heart just broke when one of them called me crying like crazy. If we aren't home by Friday, they are going to come up and spend the evening after school here. But I'm praying we're home by Friday!!

Melissa and I went down and watched KungFu Panda 2 and ate pizza courtesy of Vandy Volunteers... they do this EVERY monday night, and it is super helpful for the kiddos here to have something to do (not to mention us Momma's!)

Tonight the Friends of Children's Hospital sponsors Pizza-bingo downstairs. This makes me want to laugh because this was a monthly event for Melissa and I back in the day, and the nurses would laugh at us when we came back with the "loot" (i.e. toys for our kids) we won. Again, I think God has a sweet sense of humor having our hospital stay fall on pizza-bingo week! Brings back a ton of memories.

Isn't it cool how God can bring little things that make us smile even in the midst of crazy, frustrating times? I love that about God. He never promised life would be happy and roses and sunshine all the time, but he DID promise he'd help us get through it, if we let him.

Thanks goes to...

A BIG thanks to Mandy (Heart-Momma to Will) for the Subway gift-card!


And thank you to my Momma who is gonna come take me to lunch today while Annabelle naps! I am SUPER SUPER excited about this!!! I haven't been out of the hospital since Thursday!

A ginormous thanks Vanderbilt Children's Hospital. I don't say it as much as I should, but I really do LOVE our hospital here. I get frustrated sometimes, but geez. We're dealing with frustrating issues that have no "right or wrong" answer, and I'm 100% confident in the team here, that they are doing their best to help us and I'm SO SO SO thankful for them.

Blog update...

Someone mentioned in a comment yesterday that she'd like to get e-mails of posts... so I added a little gadget on the side where you can put your e-mail and "subscribe" to the blog via e-mail. You can also "follow" the blog so it will show on your blogger reader list too.


Fun Pictures...

Our attempt to tame her cords....

Yet... she still gets tangled! (Yes, I was mean and took a pic before helping her! She was trying to get a toy and was getting SO frustrated at cords being in her way!)

HI EVERYONE!!!!!! Don't mind me, I just wanna eat Momma's phone...

Happy Birthday Annabelle! (Kinda....)

I'm smiling today, and reminiscing...

Back to a time when I counted Annabelle's month birthday's and celebrated each one of them, SO thankful that God allowed her to live another month.

Today is Annabelle's "19-month Birthday." I'm still thankful for each month, but they go by fly by these days much faster! Some days I even have to stop and think for a second to remember how many months old she is.

But being back here reminds me of the sweetness of each day, no matter how frustrating and trying they might be.

So... Happy 19-month Birthday my sweet, sweet Annabelle!!!! 

Updates:

She lost weight again yesterday. Back down to 9.4kg.

Peed a little better yesterday, but still much lower than what she "should" be, so we gave her an extra dose of Lasix today as well.

Funny: The nurse noted that Annabelle's pattern is that she pees some during the day, but goes the whole night without a wet diaper.

Mommy's Response: That means she's ready for potty training! *grin* The thought of sitting Annabelle on a little baby-girl potty makes me want to seriously cry laughing. The doctors all looked at me like I was a little nuts, but whatever. I thought it funny:-)

Her 5:00 feed will be at a lower dose/higher calorie formula. Please pray that she takes it well, that her belly doesn't hurt at the higher calorie amount and that she GAINS WEIGHT with it!

Melissa (Anna Reese's momma) and I spent a few late-night hours chatting last night downstairs. I absolutely hate that our babies have to be in the hospital. But if it had to happen, I'm thankful God arranged it to be around the same time. It's nice to have a friend here.

Speaking of, please keep miss Anna in your prayers! She's down in the PICU and having a much harder time getting over her virus than Annabelle. (She doesn't have RSV, but something super similar.) Lots of prayers needed!!!!!

Answered prayer on the "home" front. My sweet, sweet in-laws have agreed to come back this week to help out at our house. This allows Scott not to have to take off work, and lets me be able to not have to worry about arranging babysitting and is just a big stress off our shoulders, although I feel so badly that they have to come back all this way. (They were just here last week for a visit... it's an 8 to 10 hour drive!)

But, I'm learning that I need to accept where offered, and that sometimes we need things, and that's okay. That's what the kingdom of God is about, helping each other. I'm looking forward to a time where I'm in a position to be able to "give" back instead of always "getting"!

OH OH OH!

BIG NEWS!!!!

ANNABELLE GOT ANOTHER TOOTH!

Okay, maybe this isn't big news to y'all, but I'm SUPER excited! It is tooth #5!! And her FIRST tooth on the top! She now has 2 bottom molars, 2 bottom (front) teeth, and 1 top front tooth.

And there are more where those came front, because she's still chewing on EVERYTHING she can find, and her gums are lots of swollen!

I'll leave you with this video. It's kinda long... but the Minny Mouse thing... maybe it's not that funny to y'all, but it has kept many a nurse and visitor in tears laughing.

Enjoy!

Quick Annabelle update

Annabelle is sleeping. Played good this morning.

Dropped her sats more than normal when she fell asleep for her nap though, so we had to go up quite a bit on her oxygen, the highest since our arrival. We'll be able to go right back down once she wakes up, but we think the junk in her lungs is just settling in there and she isn't coughing it as good as she needs to.

They've ordered another respiratory treatment, CPPD (basically where they come and beat on her back periodically to try and loosen the gunk up in there.) We could deep suction her to get some of the gunk out of there... but that is NO FUN for Annabelle so we'd much rather her cough it up on her own!

Tentative plan is still to change feeds tomorrow so they can monitor how she does and how her weight reacts.

We've also had an issue that she hasn't been peeing as much as any of us would like. Because she looks LESS dehydrated than when she came in, and she's been tolerating feeds decently, they gave her a spot dose of extra diuretic this morning to see if that would help.

She finally peed about an hour and a half later, so YEAH!

Although, Mommy isn't loving that it took extra medicine to make her pee... as I'm not sure I understand why she isn't doing it herself. Something they are keeping an eye on closely.

BIG thanks to my sweet husband for holding down the fort at home... my sweet biggest sister for bringing me socks and a hair brush that I forgot to bring along with other goodies (among them, coke and chocolate... she knows me so well!) and for my other wonderful big sister for watching my kids most of the weekend so my hubby didn't have to miss work, and for my Momma for watching them on Thursday! I have an AMAZING family! Thank you guys!

Discharge date a big honkin' ??????

I got my pink on!!!

FTT


They used the dreaded 3 word phrase today that Mommy HATES (and doesn't really completely agree with.)

Failure to Thrive. (Not an official diagnosis that I'm aware of, just a general "she's been failing to thrive since...")

We aren't going home today. Unsure WHEN we are going home.

Plan (as I know it, could TOTALLY change on Monday) is to get over the worst of her RSV sickies, then figure out what we need to do (feasibly, per mom) to make Annabelle grow.

The last I've been told is that we will not be going home until Annabelle gains weight. I'm unsure of how they plan to quantify that, as she's lost quite a bit with her current illness. So is it gain up to a certain % (NO!!!! Mommy says...) or to just gain anything or to just "start" gaining again and get back up to where we were a few weeks ago??

Big sisters visiting... & being silly!

Yesterday we lost even more weight. 9.7 kg to 9.4 kg. That is around 21.3 pounds down to 20.6 pounds. In a day. She had been hanging out around 10 kg for a while (22 pounds). At her most, she weighed 23 pounds back in October/November.


Talked with Nutritionist yesterday for a long time. Poor thing got all my frustrations vented to her, but she handled it well!  I gave her all my blog-mom-comment advice that I'd been given.

She said NO WAY to butter and mayo (I figured that was coming...) and no to coconut oil... but she was open to the idea of supplementing high calorie foods and blending them to put through the Gtube as a way to add calories (not to replace formula, although I'm not a personal advocate of that either for Annabelle.)

However, she wasn't sure the hospital would view this as a valid way to increase weight in-patient (which I really do understand...mostly...) but if we can "plump" her up in a few days and get her home... hopefully we can tweak enough to get good calories, GROW, and still remain on an acceptable schedule that allows Annabelle to learn to EAT good foods by mouth!

That said... we could be here for MUCH longer than I'd hoped/planned/expected. But then again, I need to clarify their goals and discharge requirements too, but that won't come until Monday. For planning purposes, I'm "anticipating" us being in the hospital for a week. I have no idea if that is realistic, overshooting or undershooting. Please just pray for us as we try to figure this out with babysitting, Scott's work schedule, and just all the logistics of a longer-than-a-day-or-two hospital stay.

MOMMY'S goals for Annabelle:-)

In our other hospital stays, I didn't like to leave Annabelle, but I could when I "had" to. But she's a toddler now. She gets into everything, gets bored easily, and needs someone with her most all the time. I do take breaks to go get food and things, but try to time those while she's sleeping or super occupied.

Plus... she needs her Mommy. She's getting old enough to be "attached" which she wasn't for a super long time because, well, she had so many nurses in her life it had to be confusing! She had LOTS of mommy's!

She isn't fond of doctors or nurses now. She cries when they came up to her crib! Although, she doesn't mind her main cardiologist since she sees her all the time. And they sing silly songs to her in clinic!

Speaking of... we HAVE loved seeing all of our hospital friends! Annabelle saw both of her "primary" PICU nurses yesterday, along with some other super fun PICU nurse friends!! And reacquainting with doctors and NP's and 6C nurses and RT's and social workers... while we wish it would be on better circumstances, they all became a little like family over the last year and a half so it's our own mini-reunion. They all think it's mighty fishy that Anna Reese and Annabelle chose to come to the hospital just a day apart... AGAIN. (they did this twice I believe last summer!) Although they are on different floors this time, so I'm sure they are disappointed that it didn't work out as planned!

Okay, just talked to GI folks for a second. And I'm even more confused! THEY say they don't want to mess with feeds until she is "over" this illness (which with RSV, could be a week or two) and then have a good plan in place for feeds and have close out-patient follow-up.

Yet... cardiology and nutrition had made it clear that they'd like to "monitor" her in the hospital during the change in regimen and ensure she is gaining weight before we go home.

SO I am back to the fact that I really have no clue.

And need some chocolate. Oye.

(Sorry for these long missive of updates... as I told someone else, writing them helps me get it all straight in my head and process things... and update those who like detailed updates!)

RSV stinks!

Well, as most know, we headed to the ER yesterday late afternoon.

She did better yesterday late morning, but that afternoon, she started throwing up through her feeds, having chronic watery stool (like 4 outfits soaked in just a few hours) and her heart rate was high (140's to 150's, and jumping around more than I liked.)

We called, they said come to ER.

I cried.

I know I should not feel this way. But I was just sure that we were get here and she'd be perfectly fine and they'd be like, "Uh, go home, dork! She's fine!"

We've done that before once...

Although, I then reminded myself of July, 2011, when I SHOULD have gone to the ER the night before, but didn't, and we ended up being life-flighted in and CPR and on the ventilator.

I'd MUCH MUCH MUCH rather come here and be sent home because I'm overreacting than to be calling 911 and flying here in a helicopter...

That said, we got here and she was a little better. Not coughing so much, but super cranky.

Still on oxygen all the time vs just at night.

Her ears were "bulging" when ER doc checked them. Not necessarily normal 4 days post starting antibiotic.

Temp was 99.5 (not a temperature per hospital's 100.4 protocol but still higher than Annabelle's norm)

She skipped one feed yesterday, handled her 10 pm feed okay (gagged but no puking.) But she threw up half-way through her morning feed, and is still having super watery stool.

But her heart rate is better this morning.

She did test positive for RSV (even though she gets once-a-month shots to prevent it, ugh!)  so our assumption is all of this has been due to that.

But her heart rate was doing funny stuff this morning, which made me nervous. We'll also doing an echo on her heart just to be 100% sure there isn't anything going on there either (or at least that is what they told me last night...)

Um, what else... labs came back decent, although her anti-rejection med level was WAY low, which concerns me.

GI also plans to consult us as inpatient today on our weight issues, I think they figure we're here anyway, and I'm okay with that.

Unsure how long we'll be there... at least staying another day.

Being in the hospital is SO much different this time. Annabelle no longer sits still. She stands up, cruises around the crib, tangling her cords like crazy the whole time. It's sad but funny! She was NOT NOT NOT pleased about getting her IV. Tried to take it off and I had to hold her down until she gave in to not messing with her no-no. Now she just hits everything with her club.

As I type, she's doing really good. Heart rate is finally down and level (110.) Sats are great at 94/95 (on 1/4 liter of oxygen though.) And she's sleeping soundly, and they are calling report to move us to a regular room, which will be MUCH better than the ER.

SO thankful I packed my bag yesterday morning "just in case." I forgot a few things, but nothing hugely important. (i.e. pretty blankets, HA!) But I DID grab my Valentine's Day candy Scott had got me... so that has been helpful! Also grabbed a few slimfast bars, HELLO dinner and breakfast last night and this morning!

*sigh*

All in all, we're doing okay. I'm just praying that we can get her BETTER and can get HOME soon and gain WEIGHT! (Her... not me... I need to give her some of mine!!)

Okay, they are getting read to move us up! Will update when I know anything more.

THANK YOU THANK YOU for all your prayers! I REALLY appreciate them!

Yucky Annabelle update

Sorry for the 2nd update in a day.

Annabelle's feeding clinic was a wee bit of a failure. I knew it would be because of her cold, but I think it's super important for her to get into the "routine" of going and was afraid skipping a week would get her OUT of it. So, we went, played a little, cried a lot, tasted a little pears, and that was about it.

Stopped by cardiology for a weight check.

Annabelle lost weight AGAIN.

9.93kg to 9.70kg

In October, she weighed 10.3KG at her most.

To underscore this... she can still wear the same clothes she was wearing at her 1 year birthday (I put her in her short-sleeve heart dress she wore on her birthday last Sunday... with a sweater...)

We are also all concerned about her cold. We're having to go up on oxygen (to the point where I had to call pulmonology to ask them to change our O2 script so we can get a higher flow meter and more oxygen tanks...)

Granted, this is just at night and at nap, but still. It is just worrisome.

Cardiology "threatened" (in a nice way) that if they don't see an increase in weight soon, they will have to admit her to figure out what is going on. Our clinic appt is on Monday.

They also noted if her cold gets worse, they may want to admit her for that too to be able to keep a close eye on her. Annabelle's lungs don't handle things well:-(

So, there will be some changes in the Phillips' household.

I'm going to be putting on my thinking cap and trying to find a way to add more calories to Annabelle's diet without changing her schedule. They have suggested continuous overnight feeds, which I am 100% AGAINST. They've also suggested added a 5th feeding to the schedule during the day, which I am 75% against.

Having an active 18 month old tethered to a short-cord feeding pump 5 times a day is not really feasible. Before, we had a docile little munchkin who laid or sat in one spot and played toys all day. The Annabelle we have today is NOT that way, which I am SUPER thankful for, and I feel it is worse for her to limit her activity even more.

I am also officially limiting our "outings" for the rest of cold/flu season. We are on anti-germ mode, so where as before I was a big believer in "living life" with Annabelle because really, a bubble isn't good for anyone... we are going to be bubble like for a while! Well, Annabelle will be anyway.


Prayers for our family, Annabelle specifically, are appreciated. There is just a huge cloud of "stress" and yuckiness at the moment, specifically today, and I really don't care for it:-(

Also, Miss Anna Reese, Annabelle's friend, is on her way (or at) the hospital right now with an illness as well, so please pray for her too!!! (and keep it on the down-low... we aren't telling Annabelle as we all know their all-too-frequent habit of going into the hospital at the same time!)

Colds stink! And Daddy's Valentine's! And my artist!

First... my blog will go back to "normal" sometime soon... I just have to find time to change it back! That, and I wanted to update my header a bit and haven't had time to do so. So bear with me as we "extend" the CHD awareness look for a few more days!

Annabelle has a cold.

A pretty yucky one:-(

Her cough is nasty and I finally took her to the pediatrician the other day, and she has a DOUBLE ear infection!!! YUCK YUCK YUCK!

And now her antibiotic is making her have yuckier than normal poop (sorry, I KNOW you wanted to know that!) so that's great fun too.

We've had to go up to the max setting we have at home on her oxygen a few times, although she did well on 1/4th of a liter last night. (She was on 1/16th when we first put her back on it when she didn't have a cold...)

But at least she's getting antibiotics now and I can tell she's feeling a little better today (apart from the cough) so at least that's something. We also go to cardiology today for a weight check, so I'm hoping her card will peek at her and make sure they aren't concerned that it's anything more. It is SO SO SO hard because symptoms of a cold are also symptoms we look for in heart related stuff (persistent cough, lethargic, fever... although she only had a low-grade one day..., increased O2 requirement)

So anyway, my mommy brain just needs a wee bit of reassurance today that it is "just" a cold!

We also having feeding therapy that I think we are still going to today. We could skip, but to be honest, this cold might last a while given Annabelle's low immune system, so I really don't want to skip her therapy for that long! We will play it by ear though...


In other news...

Scott had a good birthday!!! He had a surprise by his brother and sister-in-law coming for a few hours to see him on his birthday (they were in town for a concert but live in NC) and then his parents drove in that day too and surprised him at dinner that evening, along with the rest of my family that lives here! It was a fun day!!! AND... Scott and I got to go on a DATE on Sunday, something we rarely rarely get, while his parents watched all the kids!!!

And in even COOLER news...

My Lacy (almost 8) brought home a paper from school yesterday. It said that they pick 2 kids art-work out of each grade level at the school to be displayed at a special exhibit at the Frist Center in Nashville.

Guess who's art-work from the 2nd grade was picked?????? (Well, one of the two...) YUP! Lacy's!!!!! AND! The weekend of the open house when the exhibit opens is her birthday weekend, so it will be a fun thing to go see her artwork hanging in the Frist right around her birthday! I mean, how COOL is that!

Yes... I am just a wee bit proud of my daughter!!!!!!

OH OH OH!

On Friday, my girls all dressed in their Christmas-turned-Valentine'sDay dresses and Daddy took them (minus Annabelle) to the "dance" at school!!!! I came later with Annabelle since I had to help out with the "flower" stand... so Annabelle was able to get her picture with Daddy too!

So, I just can't help it. I want to cry when I see this picture. Daddy with his 4 girls... And he did SO SO SO good getting them Valentine's day presents too, because as we all know, HE is their valentine until some lucky guy makes it past MY shot-gun... (yes mine... I just can't picture my sweet, quiet hubby with a gun... me on the other hand... watch out boys!!!!)

'12 Father/Daughter Valentine's Day Dance!!!