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Sunday, November 17, 2013

About Case Updated.

Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of pregnancy, we had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different.
It's limbs were way behind in growth. It had heart problems, kidney problems, deformities and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different and we needed to see how bad all of this really was....
Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with my family. The doctor called and said he didn't have down syndrome or trisomy but that he was still a very sick BOY and they would run more tests.
The tests kept coming back without any real answers....

We went to several appointments, had non-stress tests and two+ second (and third) level sonograms every month. Somewhere in the midst of the chaos, I would remind myself to take it moment by moment, day by day.

With every sonogram, the news got worse. The baby was way behind in growth. 11 weeks. The kidney was bad, the heart  was bad, the feet and hands looked to have problems, there were several "congenital anomalies" and every time they measured my belly to check for growth, I went down a week....There was one problem after another. On December 8th (about one month before my due date), we spent all day talking to specialists and doing sonograms at Magee Hospital in Pittsburgh (about 2 1/2 hours away from our home).It was there that he said it. "Your child has too much wrong with it. It will probably die. It was just made wrong. It's "computer programing" is messed up." Those words cut like a knife. I will never forget that cold December day and our 8+ hours of gloom. On December 20th we had another second level sonogram in Johnstown. I didn't want to go. I was done, not with my baby but with the doom and gloom reports from the doctors. With "expecting the worse and hoping for the best". With the solemn, confused faces. With the painful thoughts that our baby didn't have a fighting chance and that instead of a birth plan, we were advised to have a "death plan". We went. It turned to be a good thing we did. Our baby was dying inside of me. His chord blood and amniotic fluid were dangerously low. After what seemed like hours of non stress tests we were cleared to drive straight to Magee. I hugged the Doctor from Johnstown and cried. Again. Once we arrived at Magee I had more sonograms, non stress tests and a horrible migraine.


Towards the end of the non stress tests, his heart rate started dropping. It dropped to 24. An alarm sounded, drs ad nurses rushed in and I said goodbye to my boy. After all, he belonged to God and for some reason, it looked like God would keep him. I told him I loved him and it was okay to go but I'd really like to meet him. With the help of the Drs and nurses, Case stabilized. They admitted me to a room and did a c-section in the morning. We were so scared. On December 21, 2010 at 4 weeks premature. They pulled him out and wouldn't let his daddy look at him. There were dozens of people crowded around him. You see, before birth they seemed to think he'd be born a mess, inside and out. When they finally brought him to my face, he was BEAUTIFUL.



 All 2 pounds, 13 ounces of him. He wasn't super early but due to IUGR and an undiagnosed syndrome, he was so tiny. They life flighted him to Children's of Pittsburgh, only 7 minutes away. It took 4 days till we could hold him then it was only for 15 minutes a day. After 38 days at Children's, dozens of tests and pokes, Case was 4 pounds 1 ounce and we went home.
 

 

 

Fast forward to now.




 
Case is almost 3 years old. He still has an undiagnosed syndrome (But through EXTENSIVE testing and an incredible new really extensive test we may be closer to an answer in a year or so;) fed through a G feeding tube 21 hours a day. He is only 19 pounds. He has dozens  doctors, specialists, and therapists (and keeps needing more...)He has Chari Malformation I, Hypoglycemia, Crainiosynostosis, A Stenosis of the Foreman Magnum, low muscle tone in the right side of his face, a sub mucus cleft pallet, narrowing in the back of his throat, Swallowing issues, problems with his left ear, slow motility, GERD, aspiration issues, A VSD, ASD, and PFO that are resolving themselves, other abnormalities of the heart, a tethered cord that was untethered, several other birth defects. a dysplastic, multi-cystic, left kidney, fluid in the right kidney, keratosis pilaris, Failure to thrive and probably something I am forgetting. He will have his 11th surgery/procedure on January 3 and more after that.  He is behind in speech and a bit in hitting other milestones and will be attending an IU preschool in January. He eats very, very little but is kept alive with his feeds. It seems every month or so, they find something new and add a new doctor.


 
All in all, Case is our miracle. My heart breaks for all his tiny body has been though and will continue to go through but it wells with joy at the thought of this incredible journey. It is not a glamorous one or one full of rest but it is blessed. It is full of monthly (sometimes weekly) trips to Children's, hospital stays, pokes, prods, tears and laughter. It is far from what we imagined for our fourth child but it's our beautiful/crazy/miraculous life.

 

1 comment:

  1. I mean no harm when I say this breaks my heart. I can't imagine the condition of your heart.
    Your little boy is beautiful. He looks so sweet and precious.
    I read the story and I've read some of your blog posts. It's been a long time since I've cried so much, if I ever have.
    I want him to be alright. I want him to live without complications because he's already had so many, and you've been through it all with him. I don't know how you do it and are here to speak about it. I'm happy to know that you love him and are right there with him. And I'm happy that he smiles. =)
    Life can be so so bittersweet.

    I wish you all the best from the deepest part of my heart.

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