Sadie's Story

   So here we are in the OR having a C-section to help get this tiny baby out of me (by the way, she wan't as tiny as they thought, 4 lbs 15 oz  17 in long).  There are a million people in there: my Dr, the interns, nurses, surgical techs, anesthesiologist, nicu Dr, nicu nurses, cardiology Dr, vascular Dr, my husband.  There was about 15 people or so in there.  All to make sure my baby was ok.  They pull her out, no cry.  It was as if time stood still. I can't see anything cause they have a drape in front of my face and no one is saying anything.  "Hello, people is she ok? Is she alive?"  Finally I hear a little, faint noise.  Then everyone starts hustling and bustling, over to the warmer for some help with  oxygen and suctioning.  I just remember thinking why is she not crying like babies are supposed to, but everyone kept reassuring me that she was doing great including my husband.  So shortly after they checked her out in the OR under the warmer, they brought her over to me for less then a minute so I could see her and then they swooped her away to the NICU.  And I was left to my thoughts.  Sometimes I think my mind is my worst enemy.
   Finally, I get to go the the nicu.  They roll me in and again lots of people are around her, at first I freak out silently to myself and then I realize they are doing another echo on her heart to make sure she does not have to go for surgery right away.  Her heart is dong good. No need for immediate concern.  Her lower part of her body is also getting good blood circulation (Dr's were concerned with that because of the interrupted inferior vena cava)  She was doing fantastic.  She was on C pap just because of the fact that she didn't cry very hard at birth and couldn't push all the fluid out of her lungs very well.  But that was weaned off after 12 hours and she went right to room air.  My baby was doing great.  What a relief.
  Then little things started to show there ugly heads.  Stuff I NEVER would have thought of.  So unprepared for all this.  I was prepared for her heart issues.  And her cerebellum issues I thought wouldn't be an issue until she got older and really needed coordination (sitting, crawling, standing, etc...).  I was wrong!
  She was in the NICU for 19 loooong days.  I realize compared to some babies this isn't that long, however, when your child (no less a newborn that has been with you 24/7 for the last 9 mo) is away from you for more then a few minutes, hours, days, weeks, months... it is the longest time of your life.  I can't even describe the heartache I had leaving her to come home every night (or the heartache I had leaving my other 2 to go to the hospital to see her).  It was the most emotional time of my life.  Anyways, back to Sadie, in these 19 days she had an MRI of her brain, many blood tests, a couple echo's of her heart, an EEG to check for seizures, US to check her abdominal organs.
  Luckily, all these test looked good.  Blood work was normal, no seizure activity, abdominal US showed all her organs were there and correct, her echo showed her heart was strong and stable, and the brain MRI showed her abnormalities, nothing life threatening at this point.  So why is she so sleepy?  Why won't she nurse or take a bottle or take a pacifier?  Why did she hate being held?  Why was she only opening one eye at a time?  Why was she so stiff, straightening her legs all the time, and arching her back?  Why does she not startle?  Why?  Why?  Why?  Many questions, no answers.  Finally, I said to the Dr's I was taking my baby home.  They were not doing anything there that I couldn't do at home.  They agreed with me after a couple of days and said that as long as we were comfortable with inserting an NG tube for her feedings then we could take her home.  Heck ya we were comfortable with it!  They gave me my baby and I ran!
  Finally, we are home.  Finally, 5 of us under one roof.  Finally, we can get on with our lives.  We start our new "normal".  Dr's appts, therapy, Dr's appts, therapy, more Dr's appts and more therapy.  Sadie was a very busy baby.  Plus, I had my other 2 who had preschool and dance classes and speech therapy, and needed just as much attention in their own way.  LIFE WAS BUSY!  However, I didn't really mind because I wanted answers about Sadie.  I wanted more pieces to her puzzle.  Unfortunately, answers I did not get, I got "She is very rare and unique.  We don't normally see these things. We don't know what to expect."  WHAT? REALLY?  Great, this makes me feel so confident in her Dr's.  So pretty much I have been left on my own to travel this journey with her by myself.  However, I believe in God.  And he would never leave me by myself.  He has put some wonderful people in my path to help guide me, people who have "been there" before, people who may not know much about her and her conditions but they are willing to learn with me and on their own, and people to just love us.
  This is our journey...

1 comment:

  1. Tammi,
    I had no idea and I am so blessed to have the opportunity to read about Sadie on your blog. Her story made me cry but also gave me hope. You, Sadie and your family are so strong and faithful and I hope people are both inspired to find answers about this disease and are made witnesses to God's love and faithfulness through the way you obviously love and care for your family. Thanks for being brave and sharing your personal story.

    Blessings to your family!