My First Day Home

I have been a busy baby since I got home yesterday. For a while I hung out, watched mom unpack, vacuum and clean (Callie didn't get the memo that she wasn't supposed to shed while we were gone... honestly, she probably got it and just ate it before reading it... I'm obviously the only intelligent child in this family) then I took a good nap with my dad.

Another first order of business was a bath. Sponge baths at the hospital just weren't cutting it, I needed to be submerged. I missed my bathtub. I like it so much I've been in there 3 times since getting home. Once for general cleanliness, once because I had a diapering disaster that just couldn't be solved without a bath (how embarrassing!) and once more because mom tried to trick me into a 3 oz bottle when I have a 2 oz personal limit - I took it just to tease her, then I spit it all back at her. I mean, C'mon Mom, 2 oz at a time makes a girl tall, skinny and beautiful... the doctors want me to take more out of sheer jealousy. We've learned this about them before. Anyway, I got my 3rd bath, my 3rd outfit - and mom got a new outfit too. Ha Ha. Oh- by the way - doesn't my scar look amazing? If you have to get your chest cut open - those are the doctors to do it. They understand a lady can't afford big nasty scars. Too bad those nurses who put tape all over my face causing my sensitive skin to be irritated and cut didn't have the same idea. Jeez.

I can't believe I still have this to deal with. I've lost my ability to sleep through her barking too. I'm going to need to build my tolerance for her loudness again. Since it wasn't too cold out, Mom and I took Callie for a walk... or Callie took us for a walk. Details aren't important. Mom thinks it's funny because each time she brings me outside, I sneeze. What's so funny about that? I haven't smelled fresh air in 24 days. So rude.

Here I am trying to put Callie in her place. Sit HERE Callie. That dog doesn't realize who's boss. Just wait until I start my solid foods - then she'll listen to me or I won't drop any for her.

Dad and I watched some TV in our chairs. Mine vibrates. I win.

Then we had to run some errands. You've seen me wear this hat before - but now I have full cheeks. I like to think of it as big boned. Curves are beautiful. Inner beauty is what counts. Etc, etc.

Well, blog friends, I think this will end my daily updates. I intend to be a lot less high maintenance and less exciting. It's normal to feel empty inside, to sit at your computer and refresh my page hoping beyond hope that an update will appear. I think withdrawal like the one you will experience needs at least a 5 step program.... or you can have some of my methadone. (I'm only allowed to use it for 2 more days... *sigh*) I absolutely will continue to write to you about me - a girl's gotta keep her fans happy - I just won't be writing daily. Try not to cry on your computer - that could make for all sorts of a mess. Thanks for keeping up with me on my journey to being a big(ish) healthy baby- I sure do appreciate all your thoughts and prayers.

I'll talk to you soon!

With Lots of Love From the Bottom of my WHOLE Heart,

Abby

Friday, Feb. 27- HOME!

Goodbye Fairfax Hospital! Abby was released this morning and we are home!!! She ate well (or at least well enough) she's healthy and happy so the cardiologist signed our ticket out! Our roommates for the past few days had left this morning for surgery - then they would be in the PICU - and a new roommate had just come in... they spoke only Spanish and it was beginning to feel like dejavu all over again. We packed our things, said goodbye to our friends and RAN before they could change their minds! We're planning a restful, quiet afternoon and weekend at home - because next week brings a bunch of follow-up appointments with her doctors.

Thursday, Feb 26

Abby is accessory free! The doctor came in this morning while she was taking a bottle - Linzy was telling him how she seems to have an internal clock that tells her when she's hit 2 oz, and she won't take another sip, regardless of how much is in the bottle. There were 3 oz in the bottle she was taking as we talked - and she proceeded to put it away like a champ - ensuring that Linzy looked like a fool. He said we could pull out her feeding tube and see if that didn't help her take more - sometimes the funny feeling of something else in their throat keeps babies from eating as much when they have tubes in. The plan was to wait for her to digest a bit before pulling the tube out- but the Tech came in to weigh Abby, got her naked, freed her hands, and she removed it herself! This is a trial - and she may need it put back in if she doesn't up how much she takes at each feed.

The doctors want to see an established pattern of eating so they can send us home with an exact plan - but they have started making arrangements for us to leave! The nurses are pressing for tomorrow - but the doctor didn't seem convinced that this was the best plan - so we'll see. They've called around to pharmacies to see which ones carry the liquid version of the serious drugs she's on.

Here's hoping Abby eats enough to remain tube free!

Wednesday, Feb. 25

Abby had another good day! She took 2 oz by bottle at 5 feedings today. The speech therapist came by and listened and watched and was very pleased with her. The speech therapist and the cardiologist agreed that we could offer Abby 3 oz in a bottle - but she never took that. She seems to know what exactly 2 oz is no matter how much she is offered - and she's a 2 and done kind of girl.

The doctors are also weaning her methadone (which she's on to help her withdraw from all the drugs she was on for her long sedation with the ventilator... we told you she was a serious addict!). She's been a bit cranky this evening (probably not due to the methadone wean, since that hasn't really started.) Luckily she has few enough tubes and wires that we're allowed to unplug her and bounce/walk the hallways. It's been a LONG time since she's seen the outside of her hospital room... actually today marked 3 weeks of us being in the hospital.

A few doctors and nurses actually mentioned the words "go home" today - we're trying not to get our hopes up - but we're taking bets on whether or not we'll see February from outside the hospital walls.

Tuesday, Feb. 24

Abby was a SUPER STAR today! First - note the lack of any support oxygen! She is achieving perfect oxygen saturation levels with no support! She did it on her own while napping, and - the biggest test - while bottle feeding! The final test is if she can keep her levels up while sleeping through the night.

The doctors wanted her to take 2 oz of formula every 3 hours. They said we could try to give it to her by mouth 3 times today. Anything she didn't take from the bottle on those 3 times was supposed to go through her tube after she'd tried for 30 minutes. Our super star took the full bottle each of the 3 times - in 15 minutes! She pounded bottles for Linzy twice today - and got performance anxiety this evening when Chris and our friend were here watching. But, like any good super star - she recovered from her stage fright and downed the third bottle too. All this great eating - and she's gained 5 oz in 2 days!

Also, her incision is so beautifully healed that the nurses let her get dressed in her own clothes. We all know how important her girlie-girl clothes are to her - so maybe that accounts for the great day. :) We have more pink clothes were these came from - so if that's what it takes - we can certainly help her out!

Monday, Feb 23

Abby spent some more quality time in her swing today. She had a very busy day. They shut off her feeds at 8 AM (not what they had told us yesterday) and Speech Therapy came by at 11:15 to watch Abby take a (small - 1/2 oz) bottle like a pro!!! Later in the day they shut her feeds off again, this time for an hour - and Abby took a 1 oz bottle - again - like a pro! Everyone was thrilled.

We also had a Physical Therapist and Occupational Therapist come by and do an evaluation. They gave us some exercises we can do with her to help with her muscle tone. We'll see them 2-3 times a week while we're in-patients.

We moved rooms this afternoon since a new patient was coming in with need of a room in isolation - so we lost our own room - but this roommate is a very nice family who speak English - no telenuvelas in our predictable future. Plus our new room looks out over the roof where the helicopters land - so from time to time there is much excitement out the window!

Sunday, Feb 22

Today was a pretty calm day. Abby got her central line out, and the nurses weren't able to get a new IV in (the doctor said not to try too hard - she's so hard to stick - he didn't want them torturing her for a "just in case" measure). Abby's nurse found her a swing so she was able to play around in there today (don't worry Robbie - she doesn't like it nearly as much as she likes yours ... but this was an acceptable second.) She was much more alert today - looking around and awake for a good part of the day. (Likely completely taken by the chick-flick-fest that we had going on today!)

They changed her feeds to 20 hours on, 4 hours off. So tomorrow they'll turn off her feeds at 1 PM and we'll try a bottle at 5 PM... you can think of us then! The doctor said that the difference between her taking some by mouth vs none by mouth is HUGE... whereas the difference between her taking some by mouth and all by mouth is really not significant. Keep your fingers crossed!

Saturday - Feb. 21

As the doctor said - "Look Mom, no pacemaker!" Today the surgeons came by and took out Abby's pacemaker wires, and her chest is now accessory free! She still has her central line (on the inside of her left leg... which comes out tomorrow morning), her nasal cannula for oxygen (weaned today from 2 liters/minute down to 0.75 liters/minute) and of course - her feeding tube. Tomorrow they'll try again (they tried today to no avail) to give Abby an IV in her hand or foot - for an emergency. She isn't getting anything through IV anymore - but they like to be overly cautious when possible.

This weekend we're working on picking up the rate at which she is fed via the tube and lengthening the time between feeds. Right now she's getting 4 oz over 5 hours, then an hour off. They're working towards taking almost 12 hours off and letting her hopefully get hungry enough to take a bottle on Monday when Speech Therapy is back to work with us. For now we're trying a bunch of oral exercises that stimulate her sucking reflex, and we're giving her a pacifier dipped in sugar water (the nurses swear it's like crack for babies... Abby tends to Just Say No) to get her to suck. All in all, she's doing pretty well.

She's still very sleepy - but while she's awake, she loves to stare at her vitals monitor. It may have to do with the colors, lights and wavy lines - but I'm guessing she's just darn impressed by her killer stats. Her doctors say she read the book... great heart rate, perfect oxygenation, and a respiratory rate (breaths/minute) that is a third of what it used to be. Amazing what a perfect heart can do. :)

And now what you've all been waiting for: the results of my new chair/old chair comparison. Pros of the new chair include that it is wider (a bit less like sleeping in a coffin) and longer (I don't feel like the Jolly Green Giant with my feet hanging off the end.) Cons: it's pretty hard, and it's plastic/vinyl, and, well, it's a pull out chair. All in all - I won't be sad to leave it behind.

Friday, Feb. 20

Abby is no longer intense! After 24 hours of watching her heart rate the cardiologist and Intensivist agreed that while her slow heart rate is unusual - it's not concerning. It never dropped to a dangerous level - and they wrote the orders for us to bypass Intermediate Care and come straight back to Pediatrics - 3 rooms down the hall from where we were prior to her surgery. It's a pretty large, private room with a bathroom - a huge improvement. Now we need to start to really work at her feeding... we had another day without a lot of luck - the party girl continues to recover by sleeping a good portion of her day away.

In other breaking news from Fairfax Hospital - today the entire pediatrics floor - all units- got new sleep chairs. I know you'll be on the edge of your seats to hear tomorrow about the comfort level of the investment.

Chris left this morning for a golf weekend in Florida - planned way before we knew Abby's surgery would be moved up to Feb... and he only went when Abby's cardiologist gave him doctors orders to go. Doctor's orders to take a vacation? We're going to keep her around! We figured we haven't gone wrong doing exactly what she tells us to thus far - why change now? Linzy's mom came down to help out while he's away, so we'll have a girls weekend here at the hospital trying to convince Abby that she LOVES her bottle!

Thursday, Feb 19

Well, the party's over - and the party girl crashed hard! Last night around 2:30 AM when Linzy and the nurses were completely out of ideas of ways to get Abby to sleep and poor Abby was crying and beside herself due to exhaustion, she was given another dose of whatever super drug they'd used the night before - and Abby has barely woken up since! She literally slept the day away today.

She made some big progress today - even while sleeping! She traded her high flow, high humidity oxygen machine for just regular oxygen, and we had our first meeting with a speech therapist to start working on her suck/swallow reflex and bottle feeds again. This was not a highly productive meeting as Abby has been on continuous feeds through her feeding tube (currently placed at the top of her intestine)... and as you may recall from her pre-surgery days, our little princess only eats when she darn well feels like it. We think she'll have better luck eating when the doctors turn off her continuous feeds and allow her to get a little hungry... and also when she's more awake - the party girl took a few sips and passed out again. The Intensivists (the doctors here in the PICU - experts on all internal systems) are more concerned with giving her good nutrition. Getting her to take a bottle is something we can play around with when we leave the ICU.

The only reason we're still here is her funny little heart rate that she had a few days ago as well. She'd stayed away from the lower heart rate for a few days - but it came back yesterday. The Intensivist explained that what the body really needs is a certain volume of blood moving at all times. Different people have the ability to move different volumes of blood with each pump. If you can move a high volume of blood, you can have a low heart rate. Most infants can not move high volumes of blood - so they have heart rates in the 130's and higher. Abby's heart rate has dipped into the high 70's a couple times... but the doctors are noticing that her blood pressure, color, pulses, etc. are not affected when she does this. They think this is just her norm - although it is not the norm for infants Abby's age. While they monitor it for one more day they want to keep her on the pacemaker... equipment not allowed out on the Pediatrics floor. The cardiologists and Intensivists are thinking we'll be moving tomorrow. We're okay with being non-intense patients in the ICU - at least we have a private room - and we certainly know a lot of people!

Wednesday, Feb 18

Today Abby is 3 months old! It wasn't a huge day in terms of progress, she didn't go backwards, we just didn't really go forwards either. She still is not sleeping. Last night she got some pretty strong drugs which did knock her out for a good part of the night. Today we tried rocking, reading, singing, and even bringing in her bouncy seat from home and putting that in her crib. She did close her eyes for 10 minutes in the bouncy seat - pictured above - but since then it hasn't worked. They'd really like to avoid using drugs again - we don't want an addict on our hands - but Abby's not giving in! Such a bad sign of things to come in her teenage years.

Tuesday, Feb 17

Abby had a really fantastic day, followed by a rougher evening. This morning bright and early big moves started to be made. First they took away the elephant trunk breathing machine and replaced it with the next step down, a nasal cannula that delivers oxygen into her nose the same way as the tanks we used at home - the one difference is this is set to a much higher volume and uses humidity as well. (All an effort to help Abby keep her lungs open and not collapsed).

Next, the surgeons said that she could lose her chest drainage tube - so they came by and took that out. Later in the day the doctors said there was no need for one of the lines in her leg - so that came out - and the IV they put in before surgery no longer worked - so that came out! As lines and tape came flying off - it was obvious that it had been 9 days since Abby's last bath - so Linzy and the nurse bathed her, washed her hair and put her pretty bow in. To end the early part of the day on a perfect note - Abby finally has few enough tubes that we could push a chair right next to her bed and with help from the nurse, Linzy was able to hold her!

We spent all day with the lights out trying to get the poor girl to sleep - but 24 hour party girl became 48 hour party girl, and tonight she finally feel apart. Fussy and cranky with huge puffy eyes and completely over tired - poor Abby has had enough. Also, the oxygen being delivered to her is at such a high volume that it's filling her tummy with uncomfortable gas bubbles. Throughout the night the doctors have tried a few drugs to get our party girl to sleep - to no avail. Finally (it's now midnight) we seem to have found one that works - so in case this sleep is short lived - Linzy's going to bed too - so thrilled to have reflected back to the amazing first part of the day.

Monday, Feb 16

Holy smokes, blog friends - I do not even know what has happened here. You can only imagine my dismay when I woke up yesterday to find that I'd slept straight through 6 whole days! Yikes! I woke up yesterday afternoon and have been awake pretty much ever since. Last night the nurses gave me some Tylenol with codeine which knocked me out for a bit - but since then - I've been a party girl. I don't need any medicine anymore, so I'm just up all the time. Finally last night around 12:30 Mom said I could be a party girl all night long if I wanted too - but she was going to sleep. So I did. I partied all night. I have a lot to catch up on after missing 6 days. Plus, no way am I going to sleep - you should see what they did to me the last time I fell asleep! Mom should have stayed up all night too - then she wouldn't have looked like such a fool early this morning when all the doctors and surgeons came into the room to talk about me and she was sound asleep on the pull out chair trying to pretend like she hadn't actually been asleep. At least she had her cute dog pajamas on - I was almost embarrassed for her. Mom called Dad and Grandpa and had them bring me my mobile - so I've been talking to my animals again - I have so much to tell them - but my voice isn't working so great today - my throat's a little sore.

So, over night, while I was being a rockstar - I fixed that whole heart beat thing. I've had a heart rate of over 100 since midnight. My doctors love me. Who doesn't?


Speaking of people who love me - check out all this stuff! My crib is all fun all the time. Apparently I slept through some big holiday where everyone professes their love for me. I got cards from a lot of people - and quite a few older boys. A girl's gotta have options. I'm going to let them all think I'm playing hard to get... when really, I just slept through the holiday and didn't get a chance to send out any cards (shhh, don't tell).

This is what I do all day. I just keep rolling my eyes up in my head and checking out this doofy looking elephant trunk and rediculous bonnet. I told Mom to at least put the bow on top of the hat - but let's be real - there's no way to fix this crazy hat. So, I listened to the doctor as he came by today and gave me the list of things I need to do to get out of here. He was super excited that I fixed my heart rate, and that I'm doing such an amazing job breathing without a machine. He said my next goal is to get rid of this breathing machine (DUH! This hat is UGLY) so he's going to turn it down a bit all night and take a picture of my lungs in the morning. He says I have to get rid of my central line and my few other tubes in my body (he said he's almost ready to de-accessorize me... which I'm okay with because none of these accessories sparkle or shine.) After I do that - he says there won't be much reason for me to be hanging out in this Intensive Care Unit anymore. But then I have to move rooms and learn how to eat again. So we're not really close to getting out of this hospital - but I sure have made a lot of progress in a week!

Sunday, Feb 15

As usual, Auntie Em ensured that Abby was looking her best by getting her some beautiful new bows to help out the doctors around here. It's hard to be styling when you lay around in your diaper all the time with tubes all over your chest - but Aunt Emily always finds a way!

This morning Abby's x-rays showed that she had collapsed both her lungs again last night - only the top 25% - as they weaned the ventilator - but - the doctors decided to go ahead with taking out Abby's breathing tube. They said sometimes it really helps them not to have the tube in there. We had to wait for them to turn off her sedation and for her to wake up fully (if she was too drugged, often times babies fall asleep and forget to breathe) so they spent the morning and early afternoon weaning the ventilator to no support, then we waited for her to wake up, and then they pulled her tube! She coughed a few times, then started breathing great! So that's a major hurdle to have made it over. She's now on a small oxygen machine that gives her some support in opening up her lungs - they'll start to wean that tomorrow and see how she does. Since the new machine makes her look a bit like she has an elephant trunk - and requires a hat to hold the tubes out of her face that doesn't allow her to wear her new bows - we're fairly certain she'll be working her way off that machine soon too!

Along with the breathing tube going away - so did all the sedation medication! We watched as tube after tube was removed from her central line.

Right now the section of Abby's heart that starts the heartbeat is going a bit slow. The heart works great and does exactly what it's supposed to do once the beat is started. Right now they've hooked her back up to her pacemaker to ensure that she doesn't drop any lower than 90. When she came off the ventilator she was up in the 110's - and we were all hopeful that the slower heartrate was due to sedation - but throughout the night she's dipped back down and is "riding the pacemaker" at 90. The doctors are hopeful that because we have seen her heart work just fine it will just be a matter of time until this problem corrects itself.

Thank you to everyone who prayed for "liquid gold" - yesterday Abby was "negative 700"! Which - in English for those of you who haven't listened to doctors round 3 times a day for nearly 2 weeks - means that she got rid of 700 mL's more than what they gave her. One of her surgeons actually threw his hands up in the air and exclaimed "Now THAT'S progress!" She's been given permission to break even from now on... so those prayers can be directed at her heart rate now.

The doctor's expect that she'll have a bit of withdrawal from the intense sedation drugs - so just like an addict she may have the sweats, etc. They're giving her a bit of Tylenol with codeine to "take the edge off". I don't think anyone else in rehab looks as sweet as she does.

Saturday - Valentine's Day

To celebrate that she has a whole heart on this very special heart holiday - Abby had a great day. She woke up MUCH less puffy and swollen and looking like our little girl. Her chest x-ray this morning was beautiful - her lungs were much more clear and open. Throughout the day the doctors started to wean her ventilator settings (very slowly, so her lungs don't collapse) and so far she's doing great. The doctor said taking her off the ventilator tomorrow is a "realistic" goal. (Sounds better than when she was calling it an "optimistic" goal.

She did have one small setback in that her heart rate very gradually dropped down yesterday over the course of 24 hours - no one hour to hour showed any large change - but when you looked at the day as a whole it had a pretty significant drop off. The doctors were okay with that during rounds this morning because her blood pressure was still good - but this afternoon that dropped off a bit too. They hooked her back up to the pacemaker and set it to pace her only if she drops to a low level again. They put her back on the medication that helps her blood pressure/heart rate and it picked right back up. They're taking a "wait and see" approach in finding out what may be causing it - but they're optimistic because her heart shown it can keep good rates on its own. Taking her tube out and letting her be more alert could help, too.

Linzy has been staying at the hospital each night since the accidental overdose. Tonight we all went out to dinner and Linzy came back to Abby's eye's wide open and her moving her arms around. She has continued to be pretty active (comparatively speaking, of course) this evening. It is amazingly encouraging to see her looking more and more herself and seeming like she feels so much better. Of course, this new state of semi-alert has Abby in soft restraints since the nurses have all seen her "pull the tube" routine... even in her very drugged state - she has shown off that skill all week!

Friday - Feb. 13

There's not a whole lot to report today. Abby's chest x-ray was worse than the one from yesterday - this one showed that her right and left lung had areas of collapse. So taking out the breathing tube definitely did not happen. The doctors say we'll try for a new goal of Sunday. They're trying a few new combinations of diuretics since they didn't want to give her anymore of the one they'd overdosed. Throughout the day they tried different combinations and seem to have found one that works. The plan for the day and night are to try giving her a few breathing treatments that would break up any secretions in her lungs that could be causing her to have them collapse, and to try a few ventilator settings that will hopefully help her open up her lungs and take full breaths on her own.

The surgeons came by and said her heart repair looks great - she's completely off the medications to help with her blood pressure and she's doing really well without them... now we're just waiting on the lungs.

Grandpa Nathlich arrived today from California to meet Abby for the first time! The trip was planned before her surgery (and his!) but we're hoping she'll use his visit as motivation to get off the ventilator, get off sedation, and show him her great personality... or at least her beautiful blue eyes.

No matter how long it takes, we don't want to lose sight of the huge accomplishment: Abby can wish all of you a Happy Valentine's Day with her WHOLE heart!!!

Thursday, Feb 12

In the "two steps forward, one step back" recovery process we were promised, today felt like one step back.

Last night Abby's right lung (the one with all the fluid) collapsed. This didn't really seem to worry them all that much - they just changed the breathing machine settings and popped it back open again. Throughout the day her oxygen levels would drop and the nurses and doctors could tell that her breaths weren't as deep on that side. She seemed to do best laying on her left side. The doctors say we can optimistically still think about taking out the breathing tube tomorrow - but we're not sure how likely that is.

As we all prayed and hoped for "liquid gold" - somehow Abby was accidently given way too much of her diuretic medicine last night. So liquid gold we got - and then had to give her fluids to balance it out. A kidney specialist was called in to calculate how much of an overdose she was given - he said that while it was by far more than she needed, it was on the very high side of an acceptable dose. Basically: too much, but not toxic. A lot of precautions were taken to check over and over again that she is alright after this mistake. So far, so good. She'll have to have a hearing test before we leave the hospital since hearing loss is sometimes a side effect of overdosing this medication.

Abby is also still running a very slight fever. They've sent out a lot of samples to the lab- which will come back in 48 hours having been tested for a specific bacteria. For now, because her white blood cells are elevated in some of the samples, they're starting her on a general antibiotic.

I refuse to end this post on such a sour note: so there were a few upsides of today. They are still weaning her from the ventilator and allowing her to take breaths over the machine on her own when she's alert enough to do so - and each time she was coming out of sedation, she was breathing on her own. The act of breathing on her own may really start to help out her right lung. Abby had 2 more tubes removed today. One that was collecting drainage near her heart - it hadn't collected much of anything, so they took that one out. And her catheter. Any tube she has in her is a risk of infection - so we're thrilled to see each one go.

Here's hoping and praying that tomorrow is a big step forward...

Wednesday - Feb 11

Today was another good day. When we arrived Abby looked so much less puffy - she looked a lot more like the little girl we always knew. Throughout the day her puffy-ness increased (so much so her belly button is now an "outtie" whereas it was always an "innie" before!). She's starting to look like the Sumo Wrestler we asked her to be prior to her surgery. She had a good, stable day. No wires or tubes were taken out, but there were a few minor adjustments made: they decreased some of her meds, decreased some of the settings on her ventilator, and they started feeding her (BARELY - 2 mLs an hour... she was getting 20 mLs an hour before surgery). She's being fed through a feeding tube again (Linzy asked the nurse if she wanted her to put in the tube - the nurse declined.... which was fine, since Abby is sedated it really wouldn't have been enough of a challenge for Linzy's expertise in this area.) They say even the smallest amount of food in her intestines can help prevent infection.

Every doctor says the same thing: we need this girl to pee. Then everything else can start to happen. We still have a target date of Friday for taking out the breathing tube. Our cardiologist came by and the woman who spent every day of the last two months telling Abby to pack on the ounces is now telling Abby to slim down!

Abby's nurse just can't get enough of Abby's hair - which stands straight up in a particularly lovely fashion due to severe bed head. She's been plotting how to get a bow in it since she met Abby. Today we brought the nurses some (some is the key word there) of the "bribe the nurses" butterscotch bark our friend Missy sent down from Connecticut... it was tied up in a bag with a bow that was quickly taken to be used in Abby's hair. Each time the nurse adjusted Abby, she'd comb her hair and re-do her bow. It's functioning quite nicely to help the doctors who don't know her well choose the proper pronoun when they talk to us.

Tuesday Night

Today was a pretty good day. Abby ran a pretty high fever overnight and has a lot of fluid in her right lung. They tested her for RSV and the flu - both of which came back negative... thank goodness! So that was the beginning of the good news. Other good steps today: (1) they turned off her external pacemaker and her heart is working great on its own. They do have her on a medication to raise her blood pressure - in hopes of stimulating her kidneys to help clear her lungs. (2) They were able to remove one wire that was monitoring her heart - she was stable enough that she didn't need it. They told us any time a wire or tube is taken away that is a huge step. (3) By the end of the day, her fever was way down.

As for the not- so- great- things: (1) Abby has a lot of fluid in her lungs, esp. the right one. It's not unexpected - her lungs looked pretty bad before surgery. They are thinking right now they won't be able to take her off the ventilator until Friday. (2) She is really, really puffy due to all the extra fluid in her body. They are looking for what the nurse calls "liquid gold output" (urine) - and lots of it! (3) Down Syndrome children are very tough to sedate - and they were having a tough time getting her sedated this morning. We are supposed to either not talk at all, or speak very quietly around her - because she moves around a lot when she hears voices - and this is bad for her breathing tube. But - by the end of the day - she was much more restful. None of these bumps in the road are unexpected, so we're happy about that.

We continue to come home at night - there is no place to sleep in the room where she is now - and there is a nurse at the end of her bed 24 hours a day. They tell us to rest up now so that when they do take out the breathing tube and she's uncomfortable and needs one of us with her 24 hours a day - we're not too tired to do so. The house feels so strange without her.

The Evening After...

Abby's surgery went great! The surgeons said there were no surprises when they went in there - everything was as they had expected. Abby went down to surgery at 6:30 AM, we had a chance to ask a few final questions of the surgeons and anesthesiologist, and then we kissed her, wished her good luck and watched them take her down to surgery prep. (It was VERY hard!) The nurse paged us as she said she would, an hour for surgery prep, 3 hours for the actual surgery, and 1.5 hours to close things up, finish tests and transport her. The surgeon came to see us at 1:00 and told us that they had repaired the holes in the walls of Abby's heart and successfully split the one common valve into two valves as it should have been. He said he thought the toughest part of her recovery will be clearing out her lungs, which have a good deal of fluid in them due to all the extra blood that has travelled through them when the heart had holes in it.

As for her recovery, the doctors say that she is in the range of "normal" - she's not on the fast track, but she's doing well. Right now she is intabated and has a machine breathing for her. Her heart pumps well all on its own, but they do have her on an external pacemaker in order to get it pumping faster and raise her blood pressure - which will help with healing. She's on about a million medications (see the picture below? The large screen shows her vitals, every one of the smaller machines is a pump giving a medication or fluid via her central line). They tell us the PICU is kind of "two steps forward, one step back", it's still forward motion, but it can get frustrating and we shouldn't let us. (Funny aside: we're so tired, and the other day the surgeon told us all this and said it's easy to lose patience when she's going backwards... which Linzy heard as "lose patients"... but was quickly corrected). A huge step for her will be when she's strong enough to be taken of the ventilator.

As for us, we are exhausted and still have knots in our stomachs. We know she is far from out of the woods, but we are so grateful to the doctors and nurses who are taking such amazing care of our precious little girl. We have an extreme sense of relief - after 12 weeks of anticipating this surgery - we're thrilled to be on this side of it. The nurses stepped out of this picture, but there are two of them at her bedside, working only on her, reading her machines, and taking care of her.... so it was recommended that we come home tonight so we're not useless later in the week when there actually is something we can do. However, we got the most amazing gift as we left the hospital; we went and sat at her bedside, stroked her hair and feet, and managed to get her to have one hand free enough that she could hold our finger. As we talked to her - her blood pressure rose, she fluttered her eyes and she moved around a little bit. Biological proof that she knows Mommy and Daddy.

We felt your prayers today, and can't thank you enough for all your love and support.

Surgery Complete

Just a quick update for now...

The surgeon just came in to talk to us and said everything was "as advertised" and went great. He thinks the Achielles' heel of her recovery will be her lungs which have been under a lot of stress these last months... but the surgery went beautifully.

They're transporting her and getting her set up in the PICU room now - then we'll be able to go back and see her in about a half hour.

THANK YOU for your prayers!!

'Twas the Night Before Surgery...

Tomorrow is the big day! The surgeon came by yesterday to talk to us - Fairfax Hospital has two very experienced pediatric cardiothoracic surgeons - and they will work on Abby together tomorrow. One came by to see us and explain the procedure and recovery to us. The consent forms we had to sign were easy because next to "Alternatives to Surgery:" the doctors had written in "None".

Today Abby had some blood drawn so they could "type and cross" her blood. (Don't really know what that means - but we hear it all the time on Grey's Anatomy, so it feels very official to say.) They've also put in an IV so they can give her fluids tonight after they stop her feeds at midnight. In order to protect the IV (on her right wrist) she has a splint built around her arm. That made it so she could only wear a hospital gown - which frees up her left arm for feeding tube removal. She's amazingly quick at that - so she has a "No-no" on that arm, keeping her immobile (in theory... however, in reality, she can sneak her arm out of that thing too!) Her nurse is going to try taping a sock around her arm.

Linzy and the nurse gave Abby a special anti-bacterial bath tonight at 9:30 to make sure that the skin near her incision is germ-free. She'll have another bath at 5 AM - and be taken down to surgery around 6:30 AM.

We really appreciate all the thoughts and prayers on Abby's behalf - for her, for her doctors, and for a quick recovery. Oh... and for us, and our unbelievable nerves and anxiety right now.

Surgery Update

Today Abby's surgery was moved up to Monday... not for any concerning reason - just because there was an opening in the surgery schedule first thing Monday morning. Right now we're told they will come up and get her from the Pediatrics unit (where we are now) around 6:30 AM. Since Abby is not critical - we will be bumped if necessary. The surgery itself will last around 3 hours - but with prep before hand, transport and getting her set up in the PICU (Pediatric Intensive Care Unit) afterwards, it will be about 6 hours from when we leave her until we see her again.

Today we had a the cardiac Child Life person come and talk us through the surgery, complete with a doll to demonstrate what Abby will look like when we first get to see her after surgery. We walked through the PICU and saw all the machines, etc. It was tough to see, but really good to prepare for.

Chris was begging for a night on the pull out chair - so Linzy is going home to take Callie for a run and be back at the hospital tomorrow morning our meetings with the surgeons.

Hosptial Stay #2

First, I have to say, it's killing me to post with no picture!

Abby was readmitted to the hospital on Wednesday evening. We had been talking to her doctors about how often she would vomit after a meal - often times choking and other such scary things while vomiting. She weighed 8 lbs 3 oz on Monday - but was down to 8 lbs 2 oz on Tuesday. Not the right direction.

We had tried building up her mattress, increasing her reflux medication, slowing down the speed at which the pump delivered her food - but we continued to fly through shirts, sheets and burp cloths at least 3 times a day.

On Wednesday when we called to report no progress, the cardiologist said she didn't feel comfortable treating it at home anymore. She called and got Abby a bed in isolation so as not to subject her to any sort of diseases in the hospital and we came in around 5 on Wednesday.

When we got here they took out the feeding tube we had so wonderfully placed and put in another one - it looks the same - but this one goes past her stomach and into the top of her intestine. She is now on a continuous feed - instead of 2.5 oz every 4 hours - she is fed small amounts all day and night. So far it seems to be working - she hasn't vomited yet.

Our cardiologist came by last evening after a meeting with her team and the surgeons - and they were all in agreement that the risks in waiting for surgery outweigh the benefits at this point. Right now they are saying she will have surgery on Tuesday. The surgeon will be coming to see us at some point, so we'll post more information about that when we get it.

For now, we're here until then - giving her 5 days of good nutrition. They've also done a bunch of tests (chest x-ray, echo, bloodwork, etc) in order to make sure they aren't missing any reason for her to be vomiting.

We are in a private room with complete control of the TV remote and no roommate - also no adult bed - but that's alright. The hospital is easier to take in our own room. Abby's doing really well and is thrilled to report that on this visit - they're letting her wear her own clothes!

My Busy January

Hello Friends! January was a busy month to be a baby. I'm 2 months old now, and I like to do big girl things like lay on my blanket (made for me by Mom's friend Brie) and work out my arms and my legs. I also like to talk. I hadn't really mastered reaching for things until they stuck a tube up my nose - but now I can reach for that any split second my hands are uncovered... however, I'm getting ahead of myself.

Back in early January, while I was still in Connecticut, I met my friend Lila. Here I am sizing her up. As you can see, at first I wasn't sure about her, but as we chatted, I discovered that she has real good taste in clothes (we have a lot of the same outfits) so we're destined to be friends for life. Now we just need our moms to give us a ride to the mall...

Okay, okay, let's slow down a bit. We can be friends -absolutely - but does she know I can't hold my head up on my own yet?

That Lila couldn't get enough of me. Not that I blame her.

So then we got back to Virginia and the doctors found out that I'd been dieting. I think they were just jealous because they all gained weight over the holidays and I lost weight. But, after a week of feeding me the chocolate ganache of baby food (super high calorie formula) they sent me off to the hospital for a tube in my nose through which they force me to eat. Again, they're bitter because I'm tall, skinny and beautiful. I told those nurses that gender neutral just doesn't do anything for complexion, but no matter how much I screamed (I even tried throwing up on myself in order to force a costume change) they never brought me a pink gown.

I went to the hospital on January 20th. While I was there I had a roommate - a baby who was 1 - well - I think. That baby and her mom only spoke Spanish. My parents took years of French. They had the remote control, so Mom and I had to watch Barack Obama's inaugural ball with poor coverage in between telenuovos "en espanol". Luckily the hospital had free wireless internet - and Mom and I caught up on all the back episodes of The Bachelor: Season 13 and other such smut. I think that Bachelor Jason is just dreamy.

Not only is it not pink, it also doesn't flatter my figure. Dad never would have been able to resist this pouty face. After 3 days in this outfit I was thrilled that Mom and Dad finally figured out how to use this tube and I put on some flattering pink clothes and went home!

Check out the new medical stuff in my room. See the stethoscope on the IV stand?

The upside to having this thing up my nose and down my throat is that now I can multi-task. Here I am sleeping and eating at the same time.

This month I've been working really hard at sucking my thumb. I just can't seem to get it. However, while I was up there, I found my feeding tube. I yanked that thing out so fast - and I was sitting in Mom's lap! You should have seen her jaw drop. The joke was on me, though, when she shoved a new one back up there.

"Now how do I get that thumb thing into my mouth...?"

I'm not thrilled about the idea of all this food being shoved down my throat (or should I say, shoved down my nose?) into my tiny tummy. I've been doing a lot of vomiting. A lot. The up side of that is I wear 3 outfits a day - (and Mom usually has to wear 2 because I have good aim). Recently the doctors suggested that Mom and Dad build up my crib mattress until it was at a 45 degree angle. Pretty fancy, huh? Next I plan to ask for one of those sleep number beds.