Twelve More Kisses

    On Sunday morning I wrote a poem for Emma. I started it after visiting her on Friday night, not wanting to leave her because she was doing so well and seemed really content. Not overly happy, with big smiles, but a few small ones here and there and she was also "dancing". She was kicking her legs and moving her arms and head around a lot. She does the same thing when she gets aggravated or has gas, but this was a great night. She didn't even furrow her eyebrows when I changed her diaper.

Here is the poem:

Two short chubby legs, dancing in the air
A cute little face, smiling without a care
I'm excited to see you, I've been waiting all day
Mommy is here now, Mommy will stay
You hold me tight with your small baby hand
I can't help but wonder if God told you this plan
I stay for ten minutes, but it's really an hour
You build my heart up like a strong tower

One more kiss and then I'll sigh
Next to you I'd love to lie
Twelve more kisses and then I'll go
Okay, now six more and don't say no
Oh my heart, it wants to cry
Every time I say goodbye
Never goodbye, but Emma goodnight
I'll hold you tomorrow in the afternoon's light

You are our perfect baby
Our little pumpkin bee
Even more wonderful than we ever could have dreamed
Your eyes light up, we watch you beam
The smiles you give Daddy just melt his big heart
Together forever, we will never be apart
Daddy hold you tight, he won't let go
We'll keep you safe I hope you know
I cry when you cry, but please don't be scared
Just keep being strong and know that we care

Nine months of hugs were never enough
For a three pound baby, you sure are tough
Oh how the time it tends to fly
Every time I say goodbye
Twelve more kisses and I promise I'll go
Okay, just six more and don't say no
Never goodbye, but Emma goodnight
I'll hold you tomorrow in the mid morning's light

   When I read the poem to her on Sunday night after her bath and trach care, I got teary at the end. Probably because we were about to leave again. After the meeting we had with the doctors and Emma's therapists two weeks ago, the case worker talked to us and suggested that we take some days off without feeling bad about not visiting, remembering that we are still really great parents. And she said taking a day off from the hospital because we are working doesn't count. But she doesn't have kids. It's not possible to not feel guilty and one day I cried that we even have to make those decisions. Nobody should have to think, "Hm, should I see my baby today?" But Michael and I have to ask ourselves that and we're getting through it the best that we can. 

  Yesterday the Home Health lady called and said she just got updated paperwork saying that Emma was scheduled to come home on Halloween.. Ahhhh!!!! My heart began pounding with excitement, but at the same time I was really skeptical. I am pretty sure it will be at least December before she is home. They still have to ween down her vent settings and some of her medicines. Plus she's still having episodes. Not bad ones like last month when she was passing out three times a day, but her stats still drop. Luckily after four months we are all better at figuring out what she needs. Sometimes just giving her the pacifier and playing with her hair is enough. She just wants the attention and to make sure she is not forgotten about. I don't think that is possible. Definitely not for us and even a lot of the nurses come by just to see how she's doing even if they are not her nurse that day. I called the NICU on the way to the hospital and our case worker confirmed that no, Emma is not coming home on Halloween. And that's okay since she still needs more time to get stronger.