Spoiled

I am spoiled rotten. My sweet sweet beautiful baby girl is doing AMAZING!  Better than I ever could have hoped for. She is chubby,  she is pink, she is happy, she is so smart and incredibly strong. Tomorrow we venture back to Primary Children's hospital for a cardiac MRI and look at scheduling a date for surgery 2.

I never finished this post and it is now june 21. The girls have been at girls camp all week and Trace has been on a missionary prep high adventure activity. I have always loved my children but going through this with Ellcy, my love has reached a different level. I am grateful for that, forever grateful, though it has proved to make this week extra long and lonely.

MRI went well and surgery is scheduled for Monday July 8. I'm scared to death. I can't be with out her she's been my entire life for the last six months. I remember too well waiting through the last surgery and seeing her after. Though I loved her then I treasure every ounce of her now. If it took strength before I'm in trouble this go round. But when strong is your only choice then strong you become, right? ! Somedays I wish I didn't know that to be true first hand.

Oh crap.....

She did it...or maybe I did it...all I know is Ellcy got really REALLY upset and as I was trying to console her I noticed the end of her feeding tube was no longer IN her nose!  It was,  however,  still under the tape stuck to her cheek. I wasn't too freaked out until she started spitting up and choking. Of course the hubby was out of town so I checked Devynn out of school so she could sit next to Ellcy in the car and makesure she kept breathing on the way to the hospital.
I'll admit it was fun to see her full beautiful face and not have her connected to anything or have to worry about tubes for a couple of hours.  However,  it was NOT worth the trauma of placing a new tube. Poor Ellcy,  it was so very sad, and riped at my heart while she squirmed and screamed and held her breath and gagged and....well,  you get the idea.
But all is well now. The new tube is in her right nostril this time and she is almos used to the change and remains as beautiful as ever.

Home

I really can't believe how smoothly things have gone for us....for Ellcy.  The joy comes with a hint of guilt as you meet so many parents where things are NOT going well,  parents who have been with their child in the hospital for months. We continue to pray for them,  that they will be given strength and endurance, that they will be able to find peace during the trial every parent fears.
Ellcy is currently asleep on a pillow on the bathroom floor,  her favorite nap spot. It's almost 1:00 in the afternoon and I'm still not dressed and my bed hasn't been made in days,  but I have all 5 of my children at home with me every evening and they are all happy for the right reasons, my husband loves me and we want for nothing...not much more I could ask for, not much else matters. I could wish for a whole working heart for my baby but I know that even that will bring us some form of joy.

disappointment

We were SO excited. The doctors thought we'd be able to bring our little Ellcy home on Thurs. Jan 10, 2013. It was going to be perfect, that was her original due date AND her 2 week birthday. What a miracle, to come home not 2 weeks after surgery but 2 weeks from birth!!!! So we filled her prescriptions, filled out all the paper work, got our training for the oxygen, pulse ox (sp?), feeding tube, giving meds, ect. I have to admit that everything had been going a little too perfectly, but I was happily soaking up all the blessings. The morning of the 10th came and ......guess what.....my sweetie lost weight which meant no going home. I was disappointed and it was extra hard to leave the hospital with out her (again). But I was hopeful for today thinking surely she'd weigh more (just 20grams) and come home.   The news this morning? She didn't lose any weight but she didn't gain any either. So now they are upping her calories and she has to gain weight for 2 consecutive days. Pray that Sunday comes with good news. Each day proves to be harder to leave her now that my arms have gotten use to holding her and I've fallen hopelessly in love with her perfect beautiful tiny features.

So here I go....packed for the weekend. I really really REALLY don't want to come home until Ellcy is my back seat passenger :)

Update

Tomorrow marks two weeks since my amazingly strong Ellcy made her appearance, and yesterday marks one week since her first open heart surgery. I can't believe how well she is doing (knock on wood). She is out of the CI CU (cardio intensive care unit) and up to the recovery floor. She no longer has a breathing tube. All the chest tubes and the RA lines in her heart have been removed which was a HUGE milestone...those RA lines were the reason we haven't been able to hold her. Yesterday was the first time I got to hold her since surgery and it felt WONDERFUL! Oh how I took the most simple things for granted with my other children. Mothers: hold your babies, nurse them, snuggle them, bathe them, change their diapers, get them dressed, wake up in the night to stop their tears and be grateful that you can :)

Today she will have her swallow study done to make sure she swallows good and the liquid goes where it is supposed to and not into her lungs. If that goes well than they will move her feeding tube out of her intestines and into her tummy AND it means we can start bottle feeding as well. I've never been so excited to feed someone a bottle.

Best case scenario we could bring her home this weekend! That would be less than 2 weeks post surgery...that is as fast as possible. I can't explain it but I almost feel guilty about all the blessings we've received. I've witnessed how it doesn't normally go so smoothly for most and I wonder why we are so spoiled. I guess Ellcy has a special mission and she is getting started early. I am so very very grateful for the countless prayers on her behalf. I know there are complete strangers praying for her along with family, dear friends, and neighbors. I now know what it feels like to have others bear your burdens with you and it is much preferable over bearing them alone.

So our goals for the week: get her off the little bit of oxygen she's on, remove the last IV, pass the swallow study and start eating ALOT. It's all about weight gain now...we need to fatten her up for surgery #2 in a couple of months.

I wasn't prepared...

You think you've been through it all in your head, that you've been told the plan a million times by a million different amazing doctors and nurses, and that you 've read everything there is to read. You've even toured rhe CICU and seen other babies hooked to far too many tubes. But nothing can prepare you for THIS day, the day it's happening ro your 4 day old beautiful innocent angel. You can't begin to comprehend giving your baby a kiss for what may be the last time in this life, or watching her be wheeled  through the OR doors knowing they are going to stop her heart -until you've experienced it. After waiting for nerve racking hours and finally getting the good news that everything went well you assume seeing her again will bring relief and joy....then you see her, only she doesn't look like the baby you kissed earlier, the one that atleast looked healthy. And you helplessly look at her wondering if you can find a spot of skin to touch amidst all the tubes and wires,hoping you made the right decision to put her through it all. Then, when you think you've cried enough for a life time you climb in the car, leaving the hospital for the first time and leaving her behind in the care of strangers...they are wonderful, capable, and sensitive but strangers non-the-less.

We have real reason to celebrate this New Years and yet I don't feel like celebrating...not yet.

Ellcy Ava...happy birthday Dec 27, 2012