Home Stretch?

As much as I didn't want the trach, I must admit how much I love it now.  It has given me my daughter back.  Now that she's not struggling for every. single. breath. she is starting to act like a regular 6 week old.  She's starting to smile and even gave a big smile to her big sister before her surgeries on Monday.  Those surgeries went well.  Her fundoplication went smoothly and the surgeon was able to do it laparoscopically so she just has a few small incisions.  Her feeding tube is also in place and they're going to start pedialyte tomorrow and hopefully breastmilk after that.

I still hate the thought of the fundo, but I firmly believe it was our only option.  And the best option.  Now we can start weaning off the fortification added to my breastmilk (we couldn't increase volume for the necessary calories to heal for fear that she would aspirate).  But now her volumes can go up and we can get that junk out.  I'm not sure we would have been comfortable taking her home either, thinking she was going to aspirate all the time. 

So now I think we might be in the home stretch.  She needs to heal up from her surgeries yesterday and we'll see how she does with the feeding tube.  Her trach is still healing as well, but the surgeon is happy with her progress.  Then the hubby and I need to learn how to take care of everything.  I'm already getting fairly comfortable with all the suctioning that needs to be done, but am definitely nervous about having to change the trach out.  Cuts give me the heebie jeebies, so a hole in my child's throat is definitely going to make my stomach do some serious flip flops.  But I'll get used to it.  Lots of parents do.  I just want her home.  I want her to be in our life.  No matter how different life will be from what we expected, I still want it to go on.  Life has just been on hold while we've spent the last 6 weeks commuting an hour to spend a few hours with her.  I'm anxious to wake up in the morning and have her there in the room.  And get to snuggle her whenever I want.  Man, that's gonna be nice.  *sigh*

One Step Forward and Two Steps Back

Well, in surgery Thursday the ENT discovered built up scar tissue in her nose and he cleared it out.  He thought that would solve the problem and she wouldn't need a tracheotomy, but things are different now.  She started struggling the morning after surgery.  Laboring again with each breath and in lots of pain.  So they intubated her (put in a breathing tube and ventilator), and she extubated herself (pulled it out) so they intubated her again. And gave her morphine.  And she extubated herself again yesterday. So the intubated yet again.  And gave her a higher dose of morphine. And she's finally comfortable.  For now.  They now want to do a trach asap.  As in tomorrow.  We knew this was always a possibility.  The trach wasn't going to be off the table for at least the next year because of her nose.  And that's why when the surgery went well, we didn't get as excited as our families.  Surgeries can go well and recoveries can go badly.  One minute you can feel like you're finally making progress and turn around and find you're right back to where you started. 

I'm trying to gear up for the fact that we will be here another month at least.  Who spends at least two months in the NICU with a full term baby??????  It just sucks.  And I'm just tired.  And I just want to wake up from this bad dream and still be pregnant with a perfectly healthy baby.  But that won't happen.  I'll keep plodding along and am just praying that someday I get to take her home.  When you see your baby hooked up to every monitor imaginable, you start to wonder if that will ever happen.  And the horror that consumes you at the thought that that might not ever happen is unbearable.  But there's no adrenalin left to cry or scream.  You just continue to feel it all with absolutely no release.

When she does come home, we won't be leaving the NICU behind or returning to our "normal" lives. The lives we thought we'd have with two kids. No, we'll be coming home with a trach, a feeding tube, a suction machine, and monitors.  We won't be going for long walks or an afternoon at the pool.  There won't be showing off my newest baby to the world, but just trying to keep people away as she continues to heal.  There won't be listening to her make baby noises as she won't be able to make any sounds with the trach.  I would gladly take the crying to get those baby noises. There won't be snuggling on the couch as I breastfeed her, just pumping at some point and hooking up a feeding pump to her feeding tube every few hours.  We'll be making lots of trips to doctors and therapists as well.   Life doesn't go back to "normal" once she comes home.  It will be a new normal and we'll gladly jump thru all the hoops necessary to get her home and healthy, but that doesn't mean we won't remember what we dreamed it would be like. There's part of us that will always grieve what we've missed out in the last five weeks.

My Little Girl

Figured it was about time I posted a few pictures of our newest daughter, so here she is:

Birthday!

First time holding her at 5 days old

Right after Surgery #1

Finally breathing thru her nose!

Wide Awake!

Snuggling my little girl

Love this little girl

Quick One Month Old Update

My baby is now one month old today and still not ready to be brought home. Even though surgery on our little girl's nose was a success, she is still struggling quite a bit with breathing.  She also has trouble with swallowing which seems to compound the problem as she has quite a lot of secretions following surgery.  The surgeon is going to put her under tomorrow to take a better look at her airway and see if he can find the problem. Please be praying.  And I can tell you right now that it will be at least another 3 weeks in the NICU and that's if there are no more bumps in the road.  So not holding my breath on that one. 

I'm getting to know her better though and can't wait to see more of who she is.  Love her terribly and wish she were with me all the time.