Just Too Tired

I'm sorry I haven't updated in such a long time.  Our little girl has been home for a bit over a month now and we're still just trying to adjust to life with not only two kids, but a special needs child as well.  She keeps me hopping all day and night, but we're glad to have her home.  At some point I'll write out her birth story and the story of our time at the NICU.  It's still just too soon.  And I'll write too about the struggles we're having with bonding now that she's home.  There was a lot of trauma in her first few months and I have to admit I don't feel like she's mine yet.  I feel like her nurse and I'm afraid she sees me that way, too.  Things are getting better, but we're still in crisis/survival mode.  Please just continue to pray for us.  And pray for me as I still grieve what we've lost and struggle to make up for it now. 

SHE'S HOME!!!!

That's right!  After 8 weeks and 2 days, she is finally home where she belongs.  This is definitely a difficult transition with all the care she requires, but she's very much worth it.  Now if we can just get big sister to not care SO much about her baby sister, then all will be well.

Finally holding BOTH of my girls

Soon?

Just a quick update to let you know our little girl is doing well and will hopefully be coming home Tuesday!  We have sooooo much to do before she gets here, so all prayers are welcome.  It'll be a big transition for everyone, but a joyful one as well.  Can't wait to not have to drive an hour to snuggle her!

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.

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.

Going Against My Mommy Instincts

I've been discouraged from going to the NICU to see my baby. 
And I think it's the right thing. 
But I hate it. 

She's extremely uncomfortable with the breathing apparatus they've rigged up and gets agitated easily.  She's feisty. :) But when I'm there, she won't calm down.  She wants to be with me. When I hold her, she loves it, but when I put her down, she hates it.  I want to hold her.  I want to snuggle her all day.  But I can't.  I have another daughter who needs me.  I need to eat and pump and sleep so I can be ready when she comes home.  And when she gets agitated like that and they can't get her to calm down, they have to drug her.  And I hate that. 

So I'm staying away.  Just until the surgery on Friday morning, but it breaks my heart.  I hate thinking of her lying there alone with no one to touch her, talk to her, sing to her, snuggle her. The nurses said they just try to leave her alone as much as possible.  And I know that's the best thing for her right now, but it goes against everything in me as her mommy. 

This will be Day 2 of not seeing her. We'll all be heading up to the NICU tomorrow evening to stay overnight before the surgery and then hopefully sometime after the surgery (hours? days?) I'll get to hold her again.  And she won't have to struggle to breathe.  And maybe I'll get to nurse her and comfort her the way she really wants to be comforted.  I cannot wait for that day.  And then I cannot wait for the day I can bring her home.  And nurse her on demand.  And wear her in the wrap. And take her for a walk. And see her entire face. And get to know her. And watch her grow (but not too fast! I've already missed too much!).

I miss my baby. 

She's Here, But Not Home.

Our little girl has arrived, but has not yet been held by Mommy or Daddy.  She was born a little after midnight (I don't actually know the time come to think of it) but wasn't breathing.  Once she was stabilized enough she was taken to a NICU about 45 minutes from where we live.  My husband was able to go right away with her, but I had to stay a bit longer.  Fortunately because her birth was natural and I had minimal tearing, I was discharger about 12 hrs after her birth and able to join everyone at the NICU. 

She has now been officially diagnosed with bilateral choanal atresia which is where both nasal passages are blocked.  As babies are obligate nose breathers, this kept our little girl from getting any breaths after birth.  She will require surgery, but they want to rule out other conditions as choanal atresia is typically seen with other problems.  She has already been weaned off oxygen and blood pressure meds and a heart murmur she had when she first arrived has resolved itself.  She is on antibiotics for possible pneumonia because she has so much junk in her lungs. 

Please be praying for our little girl and also her parents and sister.  Little Miss is having a rough time being uprooted and not seeing Mommy as often, but the girl is also helping keep my supply up along with pumping so hopefully her sister will still get to nurse at some point.  Hopefully by the end of the day we will have some idea of what the next step is and how soon they can fix her nose.

And even though I haven't held her or seen her entire face yet, I can tell you she is quite the cutie and quite the little fighter.  Cannot wait until she's in my arms and I can look at that sweet girl for hours!