The biggest lessons come from the smallest things

It was quite a rough night last night.  I talked with Brian about how I was feeling - he was completely supportive.  He told me whatever I needed to do to feel OK, he was right there with me.  He said if I needed to go spend a few nights in the NICU with Meagan, then we'd make it happen.  It felt so good to have his support, and to just let out my emotions.  And it reminded me why I married him and why he's such a great husband and father.

We left early for Children's today.  We took Brian's mom to meet Meagan for the first time -- She enjoyed seeing her and was excited to meet her newest grandbaby.

Brian and I talked to Meagan's nurse about her progress.  She said Meagan had done fine that night still breathing on her own -- she said she was worried they would have to place another catheter because all night, she would have dry diapers, or slightly wet ones... but nothing above 5cc's of pee.  The Nurse said then when she was talking about putting another catheter in, she changed Meagan's diaper again... and... Meagan proceeded to pee all over her. 87cc's worth!! Sooo, needless to say - she did NOT have to get another catheter!! She's continued to go all day on her own too...so we have avoided (for now) this hurdle and hopefully she keeps it up!

I also asked about her oxygen level.  She was on a fast flow at level 7 ... the Nurse turned her down to level 6 and she seemed to be doing well on that.  She stayed on level 6 all day, and when I called tonight, the Nurse said the Respiratory Therapist went ahead and turned it down to 5.  So we'll see how she does on that tonight.  If she does well, they may even turn it down to 4 tomorrow.

Meagan also got her first visit from the Physical Therapist and Occupational Therapist.  They explained what they do and how they will work with Meagan in the NICU.  They went ahead and did an assessment.  They worked with her hands, arms, legs, feet, and eye contact.  They sat her up, turned her head, and put her up on my shoulder on her tummy.  The told me they were happy with how she was doing so far - she seemed very tolerant of the movement.  They said each of them would be back two times a week to work with her and make sure she was adjusting to "normal" newborn life smoothly from the NICU.  They also said their early assessments would help once we get home and get her into the Babies Can't Wait program because they could write up something for the program's therapists so they knew exactly where Meagan was when she left the NICU.

The last and biggest issue is her feeding ... They had her on 30ccs of Breastmilk going through her feeding tube over an hour.  She had a lot of spit up, so they spread that out to over 2 hours ...  They ended pulling about 20-25ccs of residual out of her belly each time though (milk that did not digest but was just sitting in her stomach) .  The Nurse consulted with the Neonatologist  and he said to go ahead and put Meagan on a continuous feed 24/7....so she basically gets 20ccs of breastmilk every hour around the clock.   The nurses still pulled quite a bit of residual out tonight .. but.. it was less than before. So they will re-evaluate tonight .. and then see if they should keep her on the continuous feed, or if they should turn it down to be more like regular feedings again.  What they don't want to do is turn it down before she's ready because then basically, most of the milk is sitting in her belly anyway instead of being digested.. and she isn't getting the proper calories.
We'll see how this goes -- we were told feeding would be the hardest thing for her to accomplish.. and her other little setbacks certainly haven't helped.  But we're confident that as long as nothing else happens along the way, if we can get feeding conquered then at least we'll be one big step closer to her coming home.

Todays' events got me thinking about a lot.  I had such an awful day yesterday with missing her and dealing with the emotions of not just the past week, but, really, an entire pregnancy, that my sadness clouded the truth of the matter.  As the Physical Therapist sat Meagan up today and was working with her, I realized that here is this beautiful tiny little person - who is dealing with more in her first seven days than most of us deal with in a lifetime.  She's been through a stressful pregnancy... brain surgery... enormous pain and discomfort... being poked and prodded day after day ... and she can't even stay with her mommy yet or get a cuddle from me whenever she wants to.  Here I was, being sad, and missing my baby.. but looking at her today, all I could think about is what SHE has been missing.  She is also missing her mommy .. the snuggle time.. the nursing time ... the time just being held close to sleep while I recover.  And she is too tiny to understand any of it.  At least I have that understanding. 

So today I decided that I need to get myself together.  She has so many needs. She has already had a hard path .. and she has a completely unknown future. I can't give her any of what she needs for sure - I can't tell her exactly what she will do in life... I can't tell her the shunt will work forever ... I can't promise her she won't have any setbacks. But.. I can give her ONE thing she needs  - and that's a strong mama.  From this day on, I need to put my issues aside, and be that rock that she needs.  I need to keep looking at things in a positive way  -- and keep my sense of humor I've had this whole time but somehow lost recently.  These are the things I CAN give her.. that she will use to reach her fullest potential.

I love you so much Meagan. Keep fighting your way through all these little challenges so we can get you home where you belong.  But until then, you just focus on you ... and so will I.

I brought in some comfy pajamas for Meagan now that some of the tubes were out. She seems nice and comfy in them!

First session with her Physical Therapist and Occupational Therapist.  She tolerated the movements really well and even opened her eyes for quite a bit!

My favorite part of each and every day