Monday, March 11, 2013

Feeling Good Again: Ellie's Health Update

Ellie was born with a heart and neck issue, and for the past 2 months I feel like I've been holding my breath hoping she's OK. Well this past week she had an MRI and cardiologist appt, and I'm happy to report that she's doing amazing (woooo hoooooo!!)

A little bit about her neck.. While Ellie was growing inside my belly, she was laying in an awkward position, with her head touching her back (see pic below.) At the time, my OB said it could be a neurological issue, an osteo issue (like she would eventually need a helmet) or it could be nothing at all. When I googled "hyperextended neck" the first thing that came up was a baby with Down syndrome. Even my friend from work found this info online and asked me if it could be DS. I immediately brushed it off since all of my prenatal testing never suggested DS (surprise mom!!)  Jesse says she's like an owl, which is fitting since that's the theme in her room :-P
The crazy position she likes to sleep in! I had to send this to her pediatrician to show him what I was talking about.
She has a really floppy head and it's taking her longer for her to get her neck strength and to hold her head up. She had an MRI last Wednesday to look at her neck and brain stem.  Her pediatrician mentioned hydrocephalus, talk about making this mommy worry! Her MRI results are in and her neck looks FINE! We are starting physical therapy this week to help with this, what a relief.

Then today she had an appointment with the cardiologist. He's one of the best around, so I felt really confident in him from the beginning. He's the same doc who detected her issues in utero.  So today they did an ultrasound of her heart... the issue has resolved itself, the PDA closed on it's own! There is "no follow-up needed" ah, we are so grateful!!


All dressed up to go to the big city for her heart appointment.
I was feeling a little "heavy" today, trying to not worry about Ellie's heart. What if she needs surgery...? I could feel my emotions in my throat and was dreading any bad news, like I was going to lose it any second. The number of appointments she has is already overwhelming. I just hope that now that her heart and her neck are "OK" that I can focus on loving my baby. I also got this in my email today and found it quite reassuring (it's from the Secret):

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise.

When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."


Hi guys! 
I'm by no means saying Ellie's birth is a "negative event" but her diagnosis is definitely a new path that our life is on. I feel like I can breathe a little easier knowing that her lil' ticker is working and that her neck will get better with time. ❤

Robert Earl Keen - Feeling Good Again






13 comments:

  1. Thanks you guys, it's such a relief! :-)

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  2. What a relief for you guys :)She is so precious and I am so glad that you got good news that day...

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  3. Little Angel Ellie is a strong little chiquita!!!! Bless her little heart and her little neck! It will take time but her neck will be as strong as her heart in no time! YIPPEE for Ellie! Breath mama.....Breath!!! xox

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  4. T, I finally got a chance to read your blog. I knew there were some complications with her birth but I didn't have any idea that Ellie had DS! Reading your blog has me in tears. I could feel your heart through your words and my heart was breaking for the fears and unknown that you must have been feeling. But they were also tears of joy, knowing that God has given her to you knowing that she would be given all the love and care that she could ever possibly need<3 she is absolutely beautiful and perfect, and I am so happy to hear she is doing well:)
    Misty

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  7. Hi, 2 days ago my childs sonography reports are showing hyper extended neck issue ....I am so disturbed and feeling helpless

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  8. Hyperextended head and neck of fetus means ???? It can cure ??? Please guide me what to do ?? Its 8th month baby and 5th months reports were normal. Dr are also shocked and we are helpless .....please any one guide me

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    1. Hoping you saw my reply below, please reach out with any questions!!

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  9. Oh my dear I’m sorry you’re stressing!!!
    I have a couple of questions, how far along are you? Have you had any genetic testing done? If not I suggest a blood test called NIPT. It’s non invasive and will tell you if there are any chromosomal abnormalities. Please feel free to ask me anything. It was shocking to see Ellie’s neck like this in ultrasound. She is now 6 years old and still sleeps with her head back sometimes! But it hasn’t caused any issues other than scaring us when she was small!!

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