Wednesday, July 21, 2010

Keeping our fingers crossed...

We got moved to the floor yesterday afternoon.  Unfortunately, there were no private rooms available.  At first it wasn't bad, because we didn't have a roomie yet.  But late last night, we got a roomie and it hasn't exactly been a fun experience.  
First of all, the baby is a newborn, just a few days old.  So, I knew we were in a for a long night with wakings for feedings every several hours.  Then as they were getting settled, I had to hear (no choice as I was in the room) all about the exciting delivery and the helicopter ride and that they thought there was a heart problem, but Thank God, everything is fine.  Not that I'm not understanding, mind you.  Really, I am.  It's just hard.  
It's hard because, oh how I wish that Harlie's first weeks of life were more friendly and loving for her - and us.  I wish that her heart situation could have been "just a scare."  I wish that we could have taken her home after just a couple of nights in the hospital.  I wish that we could have spoken about her birth and subsequent days of life with excitement and happiness and heard "congratulations" from every entering nurse and doc. I wish that I could have heard her cry and fed her every several hours.  I wish so, so many things - none of which matters, because it was not to be.  
Normally I am so much better about this!  But, for one, I'm not used to hearing a well baby discharge at a children's hospital.  And, I think it just hit me at the wrong time.  I guess I have moments where I'm not as strong and this was one of those times.  It forced me to remember those days and weeks and months and all the pain that I felt.  I don't like to think about that time period at all.  It was - by far - the most difficult time of my life.    
And those memories aren’t joyful.  Each day brought more bad news of things that didn’t form or work correctly.  And while that is true, thinking about Harlie’s birth in a negative way like that makes me feel bad.  In some weird way, I feel like it’s an insult to her.  
And the bottom line is that thinking about all that does me no good.  And we've come so far!  Why think about that anymore?  I am happy.  We are happy.  
It is now 4pm and our relieved, overjoyed roomies have been discharged.  The room is quiet and all ours for a little while.  We have a corner room with a great view of the Capitol Building.  And I’m starting to feel a bit better and less angry.  Good.  
Back to Harlie and how she’s doing.  She played in some water Tuesday afternoon.  She loved it.  But she is definitely weak and had a hard time holding up the container of water to pour it out.  Her hands and arms were all shaky.  That really made me realize that although this recovery has gone so well, it was still a heck of a shock to her system.  And she tired easily and had to stop playing.  It will probably take her a while to completely recover.

The big news is that she got her chest tubes pulled today.  WooHoo!!!!  They gave her some morphine a few minutes before to help ease the pain a bit.  And two nurse practitioners did it at the same time, which I think has to be better.

Here they are without the dressing covering them.  Pretty weird looking, huh?

This is what she looked like less than five minutes after they left.

This one is probably my favorite.

She slept like that for a solid four to five hours afterwards.  I considered waking her again, but decided to let her sleep.   

Each day she is getting less and less connected.  She’s been on room air most of the day.  They have done an EKG, Echo, and numerous x-rays.  I haven’t heard anything about any of them.  Soon they are coming to put a holter monitor on her.  That will stay on her until we get discharged - as of right now - that is “planned” for tomorrow!!
Tomorrow they will get another x-ray and if it looks good, then they will go over home care and her new meds and they will send us off on our merry way!!!
I just can’t believe how well this whole surgery and recovery process has gone so far!  Today is post-op day 8 and the thought that we could go home on post-op day 9 is just crazy to me!  
This post has turned out to be very long - but I've been working on it periodically throughout the day.  Please keep your fingers crossed that her morning x-ray looks good and clear and that we get to go home tomorrow!

Thank you so much for all your thoughts and prayers and words of support and encouragement!


Kim said...

I can't believe how critical everything was just a few days ago, and that now you're talking about going home. Reminds me of January when she coded, then was at school the next week. Seriously, Harlie is the most amazing human I have ever had the privilege of knowing.

I'm crossing my fingers, saying my prayers, wishing on stars and all that good stuff that you are home tomorrow.

And while I can in no way relate to all you went through with Harlie in the early days, I can definitely understand the sting of having that new baby in the room, hearing those things. I went through one one millionth of what you did, and I still get that sting when I'm around healthy babies. It's not jealousy, just... I don't know. A sting of sadness. I would think you were a robot if you didn't feel that way today - your emotions are raw after the last few weeks of prepping, surgery and recovery to top it off. A lesser woman (such as me) would have gone to the other side of the curtain and told them exactly how lucky they are and to shut up. But you're a better person than I am. :)

Can't wait for you to get home! Hooray for Harlie!

Tanya said...

So glad to know you are looking at possible discharge tomorrow.

Tanya said...

Kim... I think what it is is grief. I love my daughter but I do still have moments like that where I grieve both for her and for myself over the loss of something I expected to be part of our lives - sometimes big, sometimes small.

Christy said...

Tanya, yes, grief is probably the word that Kim wanted to say.

And Kim, I SO wanted to yank back the curtain and stand aside and say "look at my baby, shut up and count your blessings!" But I had to tell myself that they don't know. They don't understand. And that's not their fault. Plus, I don't want to get a bad reputation at the hospital. Considering this isn't a one-time stay, I WILL be seeing them all again! haha

ANewKindOfPerfect said...

Christy, I can so relate to the feelings you had listening to the roomie's parents. When my Peanut was in for her Mitrofanoff surgery last year we got a newborn roomie too. They brought her to the ER because they said she had a seizure. When they described, even *I* could have told them that it was not a seizure. It was reflux. It only happened when the baby ate, and then she would arch her back and screech and gag. Then she would spit up, and all would be fine. When the parents were told it was reflux, they argued that "only old people have that" and insisted it was seizures.

They ended up having an EEG done which was (big surprise) normal. Good bye, thanks for irritating me. LOL Not that I wish their baby had seizures, but you know. I was there for her (what number was it again) x-th surgery, and she had seizures all that night, and I was tired.

Ugh, that was a long reply. LOL sorry! :)

I hope her xray is clear and the holter shows good results, so that you get to go home tomorrow!

Rebecca B said...

So glad to hear that you might be coming home soon. I am sure that the boys (all three) miss you and Harlie. I am not sure what kind of restrictions if any Harlie will have for visitors but I would love to drop by and visit soon. We need to go for another long walk or maybe just sit on the deck and have beverage. Sending you all my wishes and prayers that her reports come back stellar tomorrow.

Bruce said...

Look good and be clear...

look good and be clear...

look good and be clear.......

Anonymous said...

I am so happy for all of you. It will take Harlie some time to get back her strength from major surgery. Knowing all about her though I would say that she won't be restricting herself for too long. She will know when she feels strong enough to do things. Her recovery is amazing realizing that only Saturday she was not doing well at all. She is a feisty one, which will get her everywhere in this world. Our love and best to all. Still praying all the time. Love Ron and Sue and please have a safe trip home.

Anonymous said...

We are keeping our fingers crossed and are glad things are going well. Mike and Marcy

Susan said...

Christy, I SO understand about your feelings about this baby and all the feelings it brought back. I too would have to say that the first year of Ainsley's life was the worst time in my life. I love Ainsley SO much. But it was HARD in a way that most people can't even BEGIN to undertand. We ordinary healthy people have SO MUCH TO BE THANKFUL FOR. But it's just so hard to KNOW that until you've seen and lived what we have. (((((HUGS))))) We too eventually came to a place of happiness and I'm amazed we made it here. So I really relate to everything you said. Harlie is my hero! As is Ainsley. Even though I wish life was easier for them.

Anonymous said...

I am so glad that Miss Harlie is doing well!!!She looks so good, even though those procedures are not her favorite thing.

I knew exactly what you ment about "going back there". It is sometimes hard for me also to think about the "early days". I have a hard time listening to new moms and their birthing, delivery stories...but as the years go on it does get some better. Just wanted you to know that you are not alone in that, even though we(you and I) didn't have the same experience I know what you mean.

I will be praying that you all get discharged and can be at home...more comfortable.