Wednesday, February 29, 2012

Fattening Up

This little girlie is fattening up quite nicely.  We didn't weigh her today, but are thinking that she'll be back up to her 17ish pound self before very long indeed. 

Mum mums aren't very fattening, but they sure are fun to eat!

I think I may need to re-think how I am trying to motivate this girl to move.  Never what you'd call motor driven, since she's been sick and recovering she does NOT want to move.  Cue the little pouty lip, face planted on the hardwood floor, refusing to budge every time I put her down.  But let Daddy take out his favorite ice cream the other night and she suddenly threw herself toward him.  Since Coffee Heath Bar Crunch is not the best baby food, Cora got her own Coconut ice cream to enjoy with her Signing Time video.  Mmmm. 

Mmmm... ice cream and Hopkins!

Monday, February 27, 2012

So Much Better

I am over the moon to say that Cora is finally on the mend. 

She's gotten her spunk back, if not all of her energy.  She's definitely lost a bit of ground, which we are slowly working to get back.  She's pretty slouchy when sitting up and really does not want to crawl or be on her tummy at all.  She's gotten pretty used to sitting in my lap watching her favorite shows and now is not too thrilled that I'm putting her on the hard floor and getting her to work.  But that means she's doing better, doesn't it?

The break in our regularly scheduled lives hasn't been a total loss though.  This morning Cora surprised me by demonstrating her now perfect pincer grasp, as she gingerly grasped Cheerio after Cheerio, depositing them in her mouth until it was full.

She has become a pickier eater, although I did break down and introduce her to dairy in the form of honey flavored greek yogurt, which is probably the main reason she is back up another 3 ounces today. Yes, she's up to 16 pounds again! 

And I don't want to get too ahead of myself over here, but I can't really help but announce that I think that Cora signed "milk" for the first time today.  Not 100% sure, and given the fact that O-Beanie-One often chooses not to demonstrate all that she is able to do, we'll have to wait and see.  But I have a feeling that she was signing today!

We're going to continue to try to regain a normal flow over here, maybe even doing some outings later in the week, if all goes well. 

Thank you all for hanging in there with me through my worrying and complaining.  My lovely girlie and I thank you from the bottom of our very relieved little hearts.

A little thinner, but still oh so cute.  Or maybe even cuter...

So happy to be outside again, even if it's freezing in Portland.

"What?  Is there something on my face?"

Sunday, February 26, 2012

Up 3 Ounces!

And proud of it!

Yes, Little Beanie Boo weighed in at 15 pounds, 13 ounces, up 3 from yesterday.  And narrowly avoided the NG tube. She's one smart cookie!

Saturday, February 25, 2012

My Incredible Shrinking Girl

So I'm getting kind of worried.  Cora has lost an additional 1/2 pound in the last 4 days.  And she is nursing at about once an hour during the day.  She refuses food after the first few bites.  I'm not sure what else to do.  She doesn't really seem to be in much pain at this point and her mood is looking up.  So we're not sure why she's not taking in enough to maintain her weight, let alone gain.  She could still have some throat soreness, but she's almost at 2 weeks post-op now.  She could be having a hard time coping with the extra secretions in her airway from the pneumonia, or her little tummy could just be shrunken.  We don't know, but one thing is certain:  she is shrinking.  She's losing 2 ounces a day.  

She is absolutely swimming in her 9 month clothes and the size 3 diapers barely fit anymore.  Even her bibs are too big now.

If she's down again tomorrow we are seriously considering putting her NG tube back in. Then we can pump in a couple extra ounces a few times a day and work on boosting her calories back up.  Of course, we won't be very popular if this happens, but it will help give us a little more control.

I hate this, I hate this, I hate this.  If we'd have known what was in store, I don't think we'd have ever chosen to do this surgery.  We won't know whether it was successful until we know the swelling is gone and her airway is clear.  She's still snoring very loudly, having some apnea it seems, and waking herself up all night long. 

I am just so, so stressed about it all.  Stressed and concerned and so sick and tired of being cooped up 24 hours a day.  My darling husband is dealing with a very busy time at work AND a very busy quarter as a part-time student (including Saturday class!!!!).  Therefore mommy duty is even more intensive than usual.

Anyway... this is my request for good thoughts for her appetite to improve.  I really want her to get back to her pudgy little self, rather than shrinking before my eyes.

Thursday, February 23, 2012

Tuckered Out

Little girlie is taking an early nap, already tuckered out from the brief and mostly sedentary activities of the morning.

I should be logging into work for the first time in about two weeks, but instead I find myself wandering through the house feeling displaced.  Browsing online, I realize I'm just killing time, even though there is much to do.

I am more or less caught up on sleep, but I still have yet to get out of my pajamas today. I feel a bit empty and a bit sad.

Getting home from the hospital I thought we'd be on a steady climb back to normalcy, but it doesn't quite feel that way yet.  Cora is still grumpy and tired and weak.  She's refusing all but a couple of bites of solid food at a time, swallowing the first one or two and then whining and refusing to swallow.  I can't tell if her throat still hurts or if she's just not feeling that well.  She is nursing frequently, thank God.  I am so grateful that she is still nursing, or who knows how she'd be getting any food. 

But she is still very pale, with dark circles under her eyes.  Looking at her skinny little body, with her whittled down head and face upsets my stomach.  I guess I thought she'd be getting back to herself a little sooner. 

She'll still smile when something tickles her funny bone, but it's not her usual smile.  She whines and fusses after a minute or so if I'm not actively holding her.  And she's very attached to me right now.  Last night as Nick tried to snuggle her on his lap, she kept whining and reaching for me.  Not so good for Daddy's self-esteem, but I understand.  She's been hunkered down in my lap for going on three weeks now (other than when she was sedated in her hospital bed).  A week of a cold, and then going on two weeks since this whole surgery went amok, it feels like things will never get back to normal.

And I miss my happy, pink little girl with her infectious smiles and giggles.  I worry about all the time we're losing developing her motor skills, but I can't bring myself to force her to hang out on her tummy when she gets so tired and upset.  I just want to snuggle her and calm her and make her feel safe and secure.  I know that is what she needs right now, but I still worry, hoping that this period won't last much longer.

She's not on antibiotics now.  She was, but only prophylactically, since other than a day or so of fever, she hasn't shown sign of actual infection.  Obviously, chemical pneumonia caused by aspirating took a huge toll on her little body, and I imagine she is still recovering from the tonsillecty and adenoidectomy too.  But I'm ready for her to be healthy again.  Ready for our lives to contain more than mellow interactive activities interspersed between naps, much longer periods of television watching than usual, and attempts to get her to eat.

Sigh.  This whole ordeal just has me tired.  Hoping my baby girl is feeling better soon.

Since I'd rather not post pictures of my girl feeling the way she is at the moment, how about a photo flashback from a few months ago?  Here's happy little 9 month old Cora, having a blast with her Grandpa.  Love!

Wednesday, February 22, 2012

Not Quite Camera Ready

I've had some requests for pictures of Miss Cora.

I didn't take many of her in the last few days in the hospital, partly because I was too busy taking care of her to worry about pictures, and also because they just turned out horribly.

I hate to put up pictures of her looking so sad and so ill, but by request, here are a couple.

A couple days ago still in the hospital.  Sitting in the big-girl bed without her mama for a minute.  Legwarmers on arms and legs, IV in her forehead (before it infiltrated and caused her some major distress), and the hated nasal cannula still pumping in the oxygen.  Exhausted all around.

At home today, lying on the hardwood floor after her first real attempt at tummy time.  She did manage to army-crawl a few inches, then tired out and rolled over, looking up at me with this sad, tired, little Skinny Bean face.  At just about 16 pounds now, she's looking awfully thin and worn out.  I can't wait to put some meat back on these little bones.


The only half-smile I've caught on camera.  She will smile occasionally, but has not nearly regained her sassy little personality back.  We're still doing a lot of sitting and resting and watching her favorite show (Baby Signing Time is my hero, of course, and a bit of Elmo for variety).  I imagine I'll be having to work hard to un-spoil her once she's feeling better.

Can't wait to get her back to this...

Tuesday, February 21, 2012

Home Sweet Home

Cora returned home this afternoon!

After a nice familiar bath, some homemade food, clean bedding and some more snuggles, she is sleeping in her own little bed.  And boy does she need it.  Neither of us slept much last night.  Or in the last week.  I guess much longer than that, when you think about it.

She is feeling a lot better.  Still rough-sounding breathing from the gunk in her upper airway, but lungs still sound good.   A little bit of residual pain, and she hates taking any medication after all this, but we're still giving her a bit as she needs it.

I am happy to have her home.  Even with a few scratches and scrapes, and a loss of 1.25 pounds (even though she has been gradually ramping her nursing back up in the last few days).  She seems happy to be home too.  When we put her in her carseat she just started grinning.

Whew.  I am looking forward to a healthy girl for a while.  No more surgeries.

Now we'll just hope that her sleep starts to improve.

Monday, February 20, 2012

Should be Out of Here Soon

Well the day is winding down, and here I am only now logging onto the computer.  Since I've had a few texts and messages asking about Miss Cora I figured I'd be remiss not to give you all a little update.

She did get to the pediatric floor yesterday afternoon and has done pretty well.  She had some trouble with her IV last night that caused us all a bit of distress, so that's been out since then.  Which meant that she has to take all her fluids by mouth.

Today Nick actually went in to work, so it's just been me and Cora, although we enjoyed a visit from a good friend and have been visiting with nurses, doctors, respiratory therapists and a speech therapist.

Her oxygen levels are good, although she did need a small amount of low-flow oxygen overnight.  Her lungs still sound good.

But she's still trying to clear a lot of icky stuff from her airway and it seems to be collecting around her voicebox.  So she sounds a bit like Darth Vadar at times, a bit like a percolator other times, and the rest of the time like she's snoring while awake.  It was making me very nervous this morning, but seems to have waned a bit, so that is reassuring.  The RTs (respiratory therapists) assure me that her lungs sound good and that it's best if she can clear it herself.  So she's working on that, but it's not an easy thing to do.

She has been eating well and today has had enough wet diapers to show she is not dehydrated, but she was also choking quite a bit while nursing this afternoon, so I was worried about aspiration.  Enter the speech therapist who gave some tips (although not much I hadn't already thought of.)

But overall I feel pretty good about things.  We probably could have gone home today, but I didn't want to be worried and second guessing myself and thinking about an E.R. trip, so we decided to feel more confident that she is, in fact, ready to go home.

Is all this way too much information?  If so, oh well.  It's nice to have a record, although I am hoping that the finer details of this week start to fade from my memory all too soon.  Even though this is her third hospitalization after a NICU stay and open heart surgery, I'd have to say it's been the scariest and the most stressful.  Thank God it is coming to an end soon.

I really should have taken pictures today, because Cora has finally started to act like herself again: smiling and playing.  She's still in a bit of pain, which sneaks up on her occasionally, but we're managing it pretty well.

But her sweet little pudgy baby rolls and chubby cheeks have certainly whittled down.  She almost looks like a different little girl.  I am definitely looking forward to getting to fatten her up again very soon.

Sunday, February 19, 2012

Better and Better

Little Beanie was taken off the high-flow cannula last night is on regular low-flow oxygen now!  Go Cora!  Her doc was just in and said her lungs sound much better. 

She is nursing well and is not showing signs of aspirating, thank God.

Everything is improving.  They expect us to get out of the PICU to the pediatric floor today, where she'll continue to be treated with Cpap and antibiotics.  Her pain seems under control, so that's good.

She's alert but pretty serious, although we have caught a couple of little emerging smiles.  She's playing a bit with her toys, but is still very weak.  We may even try a bit of puree today.

She still has to get off all her oxygen and be consistently drinking well before we can leave the hospital.  So those are the next goals.  But with the progress her miraculous little body seems to be making, I doubt it'll be too far off.

I am one grateful and happy mama.  I slept more than 6 hours last night and get to spend the rest of my time here snuggling up with my skinny little Bean.  Without all the panic and worry of the past few days.  So hopefully from here on out it'll just be a waiting game for her to improve enough to be released.

Again, thank you to everyone for all your love and support.  I know that it has made a world of difference.

Saturday, February 18, 2012

Looking Up

Woke up from another 5 hour sleep at 4:30 to find my girlie doing much better.  The oxygen percentage and volume were lower and her respiration and oxygen saturation were fine.

She was obviously feeling better, as evidenced by her very upset little self.  Knowing that she was starving, we opted to give her some Fentanyl to calm her down for a bit without sedating her and to make her forget about her hunger for a bit.  She slept for a few minutes, then was awakened for a chest x-ray.  In the ICU there are frequent interruptions, so she was kept agitated and upset for what seemed like forever.

Then the doctor came in and gave me some good news.  He said it was OK to try and breastfeed her.  Hallellujah!  That also meant that he is confident that she doesn't need to be intubated!

I was counseled on what to watch for to look out for aspiration and the nurse watched her at first, then left us alone as Cora began to doze contentedly, occasionally groping around for another quick snack.  Things seemed pretty good.  But then I got a bit of a scare as she sputtered and spit up a small amount.  Worried she was aspirating again, I paged the nurse, who was busy with another patient so another nurse came in.  It was kind of inconclusive, but I don't really think that she aspirated.  But still, it worried me.  A few minutes later her sats dropped a bit and her respiration and heart-rate got higher.  But it was pretty hot in here, so that could explain it.  Another Cpap treatment and all her numbers normalized.  But she was still pretty aggravated.

I eventually got her to sleep a real sleep.  Then I could relax for a second for the first time in several hours.  Funny.  Things were better, but still stressful, still exhausting, still worrisome.  I so want her to be able to nurse, but am afraid of the possibility of aspirating again.  I guess that's a pretty normal and valid concern.

Her next nursing session was better, although she did gasp a little a few seconds later.  Based on the nurse's opinion aspiration would happen while she is drinking, so again, she is not too worried.  And all her numbers are good, so it seems fine.

At this point her oxygen is at 30% and the high-flow volume is at 3.  That's down from 100% and 12 initially. 

Her doctor thinks that at this rate she will likely be moved from the PICU to the pediatric floor on a regular oxygen cannula (rather than the high-flow) tomorrow.  Then once she is able to be off oxygen and is eating with no problems she can go home.  He says her lungs probably won't be perfect at that point, but definitely stable.  They are continuing the antibiotics at this point, so that her aspiration pneumonia doesn't turn into a full-blown lung infection.

For now we're encouraged to sit her more upright, although she's so weak that she can't really hold herself or her own head up.  Hoping that she doesn't experience any significant regressions in gross motor as a result of all this, especially since it's not her strongest suit anyway.

Yep.  Major swelling causing aspiration causing pneumonia.  Certainly not a routine recovery from a tonsil and adenoid removal.   But we are very grateful for the excellent care she is getting and for all the love and support being sent our way.  Thank you to all!

Friday, February 17, 2012

Slow Gains

Slow going over here.  They are gradually lowering the oxygen pressure and reducing the oxygen percentage.  Her Cpap treatments continue.  She's gradually improving with mostly good oxygen saturation (although just dipped a bit while I sit here).

But they still say that she could be intubated if things don't improve fast enough.

Sad for her, because this afternoon she finally woke up.  Woke up after being somewhat sedated and started to be herself.  Except that herself is pissed!  She talked a little and cried a lot.  Soothed by me yesterday, now she seems to want to nurse and is mad that I won't feed her.  Of course she is hungry, since she hasn't eaten since Wednesday, and even then only a small amount of nursing.  She hasn't had much since Sunday, actually.  I imagine she'll be a scrawny little Beanie when this is done.

But she can't have anything other than I.V. until they are certain she won't need intubation.  It could cause more aspiration and then we'd be starting all over.

So for her sake, I'm hoping her little body can kick it up a notch and speed things up so she can eat, get her energy back and be back on the way to wellness, health and her own home sweet home.

I leave you with the two of us snuggling in the crib this evening, trying to calm down my very unhappy girlie.

And to show how very cute she is, all a-mess and covered in stuff, here are some shots of her yesterday, rocking the chin band.  They tried this for awhile to see if it would help her close her mouth and breathe through her nose and help the cannula to work its high flow magic.  Since she's not wearing it today I guess it didn't dramatically improve things.

Nighty-night.  Fingers crossed for some good gains tonight.  Darn it her sleepy little oxygen sats are a bit low.  Pick it up little lungs!

Update in the ICU

Well it seems that we finally have a reason for what's been going on.  Two reasons, I guess.

1.    Significant swelling from the T&A, which we already knew.

2.   That swelling seems to have contributed to her aspirating. (This, we didn't know.  And damn it, I knew something was going on while she was nursing and taking pain medication, but nobody listened to me.  I'm discovering that my thoughts and instincts have been more right than I've given myself credit for.)

So at this point they are treating her aspiration into the right lung with Cpap treatments every 2 hours.  Over night she seemed to be gradually improving with increased oxygen saturation.

This morning, though, her sats are still up and blood gases pretty good, but she's working harder to breathe again.  The updated chest x-ray shows some improvement.

The main concern right now is that she has still been needing 50% or more oxygen in the cannula.  And apparently if they can't reduce that amount with good results today, she will still need to be intubated.  We're glad that the throat swelling is down after the steroids and such, but obviously intubation will probably increase that.  And they'll need to sedate her and give her a paralytic to do so.  We know that she is very sensitive to meds.  That she takes forever to wake up after sedation and that it whacks her out big time.

This morning, as I was snoozing away for 5 whole hours (a record in the last 5 days!) she was really agitated so they gave her Ativan for anxiety.  She's been pretty much out for about 3 hours  Her sats are still in the 90s, but I imagine she would be doing better if she weren't sedated.  Last night when she got agitated the nurse let me climb into her crib with her (wish I'd had a picture of that) and I was able to calm her down.  Hopefully once the Ativan wears off this can work again.  Although they are going to have to use an NG or OG tube to remove the air that's building up in her stomach and that is BOUND to piss her off.  So we'll see.

So all in all, things are looking up to a degree.  At least we know what the problems are at this point, and the treatment is helping, but just not quite fast enough.

So if you're still thinking of our girlie, any thoughts or prayers that her breathing continues to improve and that her oxygen can be weaned throughout the day would be wonderful.  So far, the love that she's been getting has definitely been making some waves.  So thank you.

Thursday, February 16, 2012

Ups and Downs

The last few hours have been stressful.  Her O2 sats keep going up and down.  So that keeps requiring attention.

Her lungs and breathing SOUND better and her blood gasses show that the CO2 levels are good, but the oxygen levels not so good.  So there's some imbalance in there that needs to work itself out.

And she's had a fever, despite steroids and Tylenol.  The new doc on duty doesn't seem all that concerned about why, but the ICU nurse that's been with her all day is a bit concerned.  It's a bit down after her last dose of Tylenol, but will have to be monitored.

And she's been very out of it and lethargic.  Could be the Precedex (sedative) so they're weaning her off to see.  For a while it was hard to wake her up.

So there's still some ground to be covered.  Not quite of the woods yet.

Thanks for continued thoughts and prayers.

Heading in the Right Direction

Things are improving here.  She is getting more stable.  The epinephrine nebulizer and the steroids seem to be helping reduce airway inflammation.  Her breathing is less labored.  Her little chest isn't sucking in and out nearly as much now.  Her O2 sats are mostly holding in the early 90s on 50% oxygen with a somewhat reduced flow.  The sedative-type drug (they explained it as calming her nervous system, rather than a true sedative or anti-anxiety med) is helping her to sleep. They haven't given any more narcotics, but are keeping her just on Tylenol.  She does have awfully pale skin for some unknown reason, but it seems likely it's from the meds.

She is waking up periodically and isn't very pleased with her situation, using every opportunity to try to grab the high-flow oxygen cannula off her sweet little face.

When she does open her little eyes half-mast, she looks around at us, questioning why the heck we're doing this to her.  Then with a little humming and patting, she goes back to sleep.

At the moment it looks like she's improving enough that intubation won't likely be necessary.  That's good, since it would further aggravate her little airway.

I think the best part is getting to snuggle her up in our laps, tubes, monitors and all, so that we can reassure her when she wakes up mad.  She seems to be much happier with the situation herself.

Thank you all for such kind thoughts and words and for so many prayers.  Little did I know that yesterday as I prayed that the swelling in her throat would get better, that this is what it would take.  But I am very grateful for the care that she is receiving and grateful that she is gradually improving.

Now we're hoping for the swelling to keep going down, for her fever not to go up, that her pain is kept under control, that she can rest, and for things to keep trending in the right direction.

Field Trip to the ICU

Last night was very scary over here.

As yesterday progressed Cora continued to have trouble nursing.  She'd try and then stop.  I could hear the liquid getting caught in her throat, choking her and coming out her nose.  But still, nobody seemed too concerned.  She had a wet diaper at 6pm so the doc decided not to start an I.V.  So after an evening of fussing and taking meds (a bit late), and just all around being stressed and tired, Cora and I finally both slept at about 1:00 am.

At 2:00 am I woke up to lights in the room and found 3 nurses huddled around her suctioning.  Apparently when they came in to do their spot check of her O2 sats they were in the 50s.  On a normal day-to-day basis she's at 100% since her heart surgery.  And so far throughout her stay she had been in the 90s even with her loud somewhat labored breathing post-op.

But last night they dropped big time.  So I watched as the nurses suctioned her and put in a nasal oxygen cannula.  They were worried about her breathing and the sound of her lungs so put in a call to her doctor, which took awhile.  In the meantime I was holding her in the room as she grunted, struggling seriously to breathe, her chest sucking in and rising and falling, while her oxygen levels continued to drop. So they started a full face oxygen mask.   Then we had a repeat performance of her breathing getting very labored and her grunting to breathe, obviously very upset.  Another nurse walked into the room as she was desating and got VERY worried.  She pretty much refused to leave, insisting that the chest x-ray get there NOW and constantly paging the magic-IV man, who was on a transport and wasn't responding.

During this time I was calling and updating Nick, who actually had gone home to sleep prepping to go to work today.  Eventually I had to insist that he came in, as a visit to the ICU was impending and her condition was getting scarier and scarier.

By that time, a chest x-ray had been done and the pediatric nurses attempted an IV on my very dehydrated, in pain (past her pain med dosage with such difficulty breathing that they couldn't give her anything by mouth due to fear of aspiration).  Picture a screaming Cora with no tears, open eyes that just didn't seem to focus, and several very worried nurses.  Let me tell you this girl was not happy about any of it.  But by this time she was so dehydrated that other than crying she had no energy to fight.

The call finally came to the get her into the Pediatric ICU, but while we were waiting for a room, things weren't remotely stable, so the nurses paged the rapid response to her room (yes, a hospital intercom announcement called the Emergency Pediatric Rapid Response Team to our room number) and then the room filled with a whole bunch of other specialists  A respiratory therapist, the charge nurse at the PICU and who knows who else were there in a second.

We ended up in the ICU shortly thereafter, where in fairly short succession, the magic-IV man came and successfully got an IV in her scalp and they were able to start fluids and meds as the doctor updated us on the plan. 

At the moment, it seems that all of this has been caused by severe swelling in the airway after the T&A.  Initially the ICU doc expected that he'd have to intubate her just to treat her, but now they are hoping that she continues to improve.  She is slowly improving.  Her blood gases initially were pretty bad, but are slowly improving.  She's on pain and anxiety meds, fluids, and steroids to help reduce swelling in her airway.  And it seems to be helping.  When we got here she was on 100% oxygen, but is now at 60% (although as I type this her sats are again in the 80s and dropping... maybe they'll be turned up again).  She's sleeping finally, but again isn't breathing as well.  Now they're shifting her around, thinking that her sleeping position is obstructing her airway.  That's the tricky thing with sedation. They need to keep her calm (a necessary thing for my agitated girl) but then that can contribute to her airway problems).  Again sigh.

We're just waiting, hoping that the swelling goes down enough with intubation, which would allow her to breathe but would worsen the actual swelling and contribute to the problem.

So I'm happy to say that things are slowly improving, but still not good yet.  And that's hopefully where you can come in.  Any thoughts and prayers would be appreciated.

I'll try to update as we go.

Wednesday, February 15, 2012

Recovery Bites

Should I be surprised that a one-year old has a hard time after having her tonsils and adenoids out?  It seems that these surgeries are often pretty rough on little ones, even though I don't think that most parents are really given an accurate idea of what to expect.  Glad that I read other parents' accounts so that I am not totally floored, but even so, it's not fun.

We had a hard time yesterday getting Cora to take much fluid after coming home from the hospital.

Then this morning she awoke with a fever and continued to refuse to drink. After giving her the pain meds, she took about a teaspoon of chilled breastmilk by spoon, only to vomit it all right up.  Then her fever rose even more.  She went about 15 hours without urinating, and now it's been 8 hours yet again.

Yes, we're back in the hospital.  Funnily enough, once we got here Cora actually started nursing (the first time she took much volume since surgery day).  Thinking we might be in the clear, her doc opted to wait on the I.V.  And we're still waiting.  If she hasn't peed by 8:00 (which will be 11 hours and will make only 1 time in a 24-hour period) then he'll start the IV.  Her nursing has waned a little too.  Sigh.

She has spent almost the whole day here sleeping.  Odd.  Really.  Because if you know anything about why we are here in the first place, it's because Little Beanie doesn't really sleep.  At least not for more than an hour or so at a time.  Today she would wake up and nurse, cry, write around and go back to sleep.  Good, I guess, since she obviously needs it.  But disconcerting too.

We also had to fight for some new pain medication today.   Based on dozens of parents' online accounts, Lortab is notoriously painful for kids to swallow after a throat surgery.  According to online ingredients lists, it's an alcohol base.  Stands to reason that it would hurt to pour alcohol on an open wound, doesn't it?  And Cora panics when we give it to her.  At this point, she's getting mad even with regular Tylenol, so we imagine she's developing fear of the meds.  We stopped giving her the Lortab this morning, noting that it turned her into a wackadoo and that giving it to her obviously hurt a lot.

But when we talked to her doc, he swears that it's a water based medicine and that it's only the taste that kids don't like.  Even though all the internet stuff says that there's alcohol in it and even though it obviously is very painful to take.  I may not be a medical doctor, but I know when something is hurting my baby, and that stuff does.

So after some back and forth, we finally got Tylenol with codeine.  She's still mad when we give it to her, but we can tell it's not as painful.  So score one for us.  Finally.

Anyway, she's actually awake for pretty much the first time today.  Taking microscopic sips of watered down apple juice and getting her Signing Time fix for the day.  I'm getting ready to try another nursing session to see if we can get one more wet diaper before we have to subject her to a likely horrific IV stick.  (I should think more positively, shouldn't I?  So, yes I envision it going smoothly with just a tiny bit of crying...) (Maybe this is a lot of parentheses, but for people who aren't a parent to a child with Ds, it is very common for our kids to be very difficult for blood draws, IVs and such.)

OK, sorry for rambling.  Gotta get back to my girl. Thanks for keeping up with us.

Maybe photos tomorrow?  No promises at this point. 

Tuesday, February 14, 2012

My Little Valentine's Gonna Make a Break For It

We're planning on getting out of the hospital here in a couple hours.  Things are going pretty well now.  She's nursing a little, and ate a little applesauce.  Her oxygen levels are good.

Yesterday evening her pain was not controlled well.  It seemed like the 4 hour dose would only hold for about 2 hours.  Her first nurse told us there was nothing they could do about it, but I had the second nurse call her surgeon for some additional meds.  They gave her a dose of morphine, which really did help manage her pain.  Even with only the one dose, her other pain med is now seeming to control things much better.  But she had a strange reaction to the morphine, causing thrashing and itching and all around restlessness into the wee hours of the morning.  She finally slept some, and today is napping, nursing for a minute or two at a time, watching Baby Signing Time (truly our saving grace) and fussing a bit.

She still freaks out when she takes her pain meds, but is overall doing much better.

Thanks for all your well wishes.  We'll be headed home soon to try and manage her pain there.

Happy Valentine's Day, everyone!

Oh yeah, I decided against posting her picture today.  The right side of her face is very swollen and red since she can't stop scratching it and she almost looks like she may be getting a bit of a shiner (or two).  She has definitely had better-looking days.  I promise to post some new pics soon.

Monday, February 13, 2012

Out of Surgery

Little Beanie is snoring way in the hospital crib, as we try to rest for a bit.  It's been a fairly long day, but things are going pretty well.

Everything got underway a little late this morning, and then the blood draw that we had requested be done while she was under anesthesia took longer than expected, so overall the whole thing took a while.  But he discovered that her passageways look normal with no obstructions other than the tonsils and adenoids.  The adenoids were obstructing 60-70% of her passageway, apparently, so out they came along with her good old enlarged tonsils.

After being off anesthesia she slept for over an hour before we could see her.  It was a little nerve-wracking watching other parents keep going back while we continued to wait, but those drugs knocked our girlie right out!

And then the waking and the crying began.  She was obviously in quite a bit of pain, alternating between falling asleep and crying.  But I can calm her with cuddles and songs, so that's what we've been doing.  That was my biggest worry going into this, hearing about how painful and rough the recovery process can be, especially for very small ones.  Anesthesia is always a concern, but since she's already been through it a couple of times before that was less worrisome.

It seemed like forever until we could give her the first dose of post-op pain meds (but maybe that's just because the entire day has seemed to take forever), and they were obviously quite painful to swallow.  But they've helped.  She actually sat up afterward and played a little.

But she was still coughing infrequently over the weekend.  And now with all the fluids gurgling around in there, and I imagine, the inflammation, she is coughing even more.  And each time it hurts and makes her cry again.  Right now she's sleeping, snoring away and making little wet gurgling sounds, and every little cough wakes her up and starts her crying again.  I'm hoping that the 4 hour pain med schedule works for her.

In the meantime, we're just hoping that she gets some rest and that we all can manage a little shut-eye in this hospital room tonight.  We're keeping fingers crossed that we'll get to go home tomorrow. The doctor wants to make sure that she's able to get enough liquids by mouth before he releases her, and also that she can keep her oxygen levels good.  So far so good.  She's even nursed a little.  Go Cora!

I'll keep the updates coming.  Thanks for all your thoughts and prayers.

Playing with Daddy while we wait.

Sitting up and alert once the pain meds kicked in.

Looks like her playful spirit is back.  In small bursts at least.

Snuggles and singing are doing the trick.

Update: the darn meds don't hold her for nearly long enough. So lots of screaming and crying in pain but nothing we can do. Just gave her the next round, causing hysteria like I've never seen. Waiting for them to kick in. Feels like this is going to be rough.

Friday, February 10, 2012

Getting Ready for T&A Surgery... We Hope

We've been hunkering down this week, trying to beat the crud.

The week started off pretty seamlessly.  Miss Cora had two appointments on Monday, which went pretty well.  First off she visited the audiologist again, who gave us pretty good news.  She said that Cora seems to hear speech very well and that she shows response to subtler tones too.  So overall she said not to be too worried about her hearing at this point.  I went in expecting another "inconclusive" diagnosis, which seems to be the norm with genetically-enhanced little ones, or so I hear.  Her ENT (a couple of weeks ago) says she doesn't have fluid build-up, which is great, since he also says her canals are too small to place tubes.  So far so good, but of course we'll continue to have her monitored.

Her pediatrician visit went well too. Cora's pediatrician is wonderful, so seeing her is always fun, until the shots at the end.  Her doctor is very patient with my LONG list of things to talk about and we always get lots of things planned for the next few months.

But the next day the crud hit.  At first I thought it may be just a vaccine reaction, but then Nick got sick.  And then I heard about Cora's little sometime-friend Samara.  (I only say sometime-friend, because although Samara LOVES Cora, little Beanie has decided that big kids are scary.  She needs a lot of warm up time.  During our Saturday dinner with friends it took the Beanie-one quite a long time and an episode of Baby Signing Time to convince her that she didn't need to cry every time she looked at 4-year old big girl Samara.  Thank goodness Samara is such a sweet and patient girl.  And really too bad that Samara came down with the crud the very next day).

In the meantime, Nick got on meds for bronchitis, and we started talking to the ENT's office about Cora's planned tonsil and adenoid removal set for this coming Monday.  According to the doc, a stuffy nose is fine, but a deep cough that impairs breathing or a fever are reasons to cancel the surgery.  And unfortunately, the surgery schedule is full for another month.

Another month of apnea and constantly interrupted sleep does not fit well into my life right now.  Especially since this week we were lucky if Cora ever slept an hour without waking.  She's boycotting her usual naps this week too.

Thank goodness, her fever is now gone and she seems to be feeling (and looking) much better.  But she does have a very occasional wet sounding cough.  I think it's just the last of the crud trying to get out.  No trouble breathing, no wheezing, and no rattling.  And I really think she'll be fine by Monday.  So we're not going to cancel it.  I guess the worst case scenario is that the anesthesiologist will make the call that she's not healthy enough and cancel it when he sees her on Monday (yes, I know... not ideal for their schedule).  And then we'd wait another month, which would be a drag.

But I'm picturing things clearing up really well.  My own crud is almost gone, Nick's getting his voice back, and we're just keeping on pumping little Cora full of good stuff like Mommy's milk, lots of cuddles and oodles of Signing Time.  This week and next week she will certainly be a couch-potato in-training.

But if all goes well, on Monday we'll check into the hospital at 8am for a 9am surgery, after a few hours of being deprived of nursing. Hopefully just a T&A, but if the laryngoscopy shows anything else, we may have another last-minute procedure thrown into the mix.  Keeping fingers crossed that this won't be needed.  And that her very infrequent cough has resolved by then.  And that they'll release her after just a one-night stay.  And that she heals quickly, can nurse, and isn't in too much pain.  Yes, I guess, hoping quite a lot.  No, it's certainly not open heart surgery, but it's stressful nonetheless, especially knowing that our baby will be in pain when it's done.

Hoping you all have a great weekend.  I may actually make an attempt to get myself and Cora out of our pajamas tomorrow. We'll have to see about that.

Still in a good mood, even with a fever and the sniffles.  Daddy is wearing his mask.

Oh, my poor little crud-ridden, insomniac girlie.  Not her best beauty-shot.

Her best zombie impression.  On the mend, and oh so serious....

Friday, February 3, 2012

Sweet Naptime

Snuggling Cora into me after she finishes nursing, the afternoon sunlight peeping in through the tiny holes in the blinds, I watch her grin at me, roll away, then roll back and reach for my face.  She giggles and grabs my hand, peering into my eyes with pure glee.  Together, tucked into the covers, we are both safe, warm, sound... complete.  As the wind blows the branches outside; blowing, whistling, howling, we cuddle into one another.

Naptime, yet she's not even close to going to sleep.  I realize that typically this would frustrate me, hurrying her to sleep only to rush out to my work, my computer, making dinner, doing laundry, cleaning the kitchen or on an indulgent day, maybe sneaking a few pages in my Kindle.

But for now I hold her in and smell the sweetness of her baby shampoo.  I tickle my fingers up her sides, reveling in her laughter, even knowing I'm supposed to be putting her to sleep.

Uh oh.  Daddy comes in.  He's caught us.  Guess it's time he gets a crack at her.

The sounds from the bedroom are quieting.  Looks like Daddy has the trick after all.

Sleep well, baby girl.

Wednesday, February 1, 2012

Together, we can do it

Tonight I am inspired and moved and joyful.  Some of my incredible blogging friends have been working hard in the past few days and it is paying off.

The Dirkes family is flying to Eastern Europe on Monday for a court date to get their little girl Charlotte.  She is a beautiful little girl who has spent her life in an orphanage simply because she has an extra 21st chromosome.  This adoption is critical, not only because it will take Charlotte from an orphanage and put her in the arms of a family that loves her, but it is critical because it will save her life.  Without being adopted, Charlotte would soon be transferred to an adult mental institution, where her chance of survival is heartbreakingly small and the quality of life is abysmal. 

Cora's friend Ellie knows Charlotte's family and hope to have Charlotte home by Ellie's first birthday in March.  And this is a goal that I am thrilled to see  happening.  In just the past couple of days, almost $7000.00 has been raised toward the cost of the Dirkes second family trip next week.

Now, any donations will go toward the cost of the third trip in March,when they will bring Miss Charlotte home!

Please take a few minutes and visit Charlotte's mommy's blog.  And if you're still not sure what kind of difference even your own small donation can make, visit Patti's blog to hear how much this kind of donation can really mean (but make sure to take a tissue with you).

To see who else is helping Charlotte come home, visit Charlotte's friend Ellie and her mommy, Megan and see what she wants for her very first birthday, or visit Samantha and her mommy, BeccaEllie Bellie Bear and her mommy, Anna, or Moxie and her mama, Meriah.

Yes, little Charlotte has a wonderful team of people on her side.

Please help, even if it's just a little... help bring Charlotte home.