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A NICU STORY | THOUGHTS FROM EVELYN'S FAMILY
At our 20 week unltrasound Nate & I were surprised with some news. Our baby girl had myelomeningocele Spina Bifida & I needed to see the high risk doctor ASAP. After meeting with that doctor, we were given all of the typical worse case scenarios & also given a bit of hope. So we scheduled our Amnio & scheduled our appointment with CHOP (which is luckily only an hour away from home). Over those 2 weeks we stayed positive with the news that her brain & heart looked very good & b/c of her CRAZY leg activity.
Our day at CHOP was long & emotionally draining. We found out that our girls lesion is T6 - L1 level. They went through how large that is & again gave us all of the worse things that "could" happen. The way it was formed is very rare & they in fact have NEVER seen this before! They even asked us to be apart of a case study. There was nothing we could have done to prevent it. We did our job, she just didn't exactly do hers. Some people believe it's a lack of Folic Acid... Not true. Don't feed into the hype. IT JUST HAPPENS.
I'll fully admit, the OB doesn't know SQUAT like the pediatric neurosurgeon does. And I didn't like the OB. He was a negative old man. But the pediatric neurosurgeon... THANK THE LORD THERE ARE MEN/WOMEN LIKE HIM IN THIS WORLD!! He's wonderful. He told me it doesn't matter WHERE her lesion is... If she's strong enough and if she has it in her she could walk! He felt all of her leg activity is a very good sign. She'll more than likely be just as smart if not smarter than MOST of her classmates (and family members, haha). BUT, her brain & heart are looking GREAT! And her legs are as straight as a board. He restored my positive outlook all over again. Even now as I'm typing this she is kicking like crazy.
Long story, through this whole thing Nate & I have been all over the emotional scale. We have seen our pastor & we have talked to many many doctors & specialists. I in no way want any one of you to feel bad for her. This is not a death sentence & is not something to worry about just yet. We will not know anything until it all happens & she is the only person to show us that. We believe deep down that this little girl is going to have a rocky start but will in the long run persevere & show all those doctors with their worse case scenario's that Byelich's/Soliday's never say die! (enter goonie reference & giggle)
In this grueling process we have found that all the POSITIVE wishes/thinking & prayers have HELPED! Such as yesterday our Amnio came back 100% NORMAL! That's HUGE. Her brain so far is GREAT (their words), her liver, kidney & bladder function are normal and her heart & legs are STRONG.
More to add:
we did not qualify for the fetal Surgery that is offered to some parents. The reason was because her lesion was 100% skin covered so her nerves weren't exposed to the amniotic fluid. My pregnancy was pretty easy other than the diagnosis.
Evelyn Rose Soliday was born 7/11/2016 @ 10:05 am via scheduled Csection in the SDU at CHOP. She was immediately rushed to the NICU but not before stopping in to my room while I recovered so I could meet my baby. The csection went well & I healed beautifully. Dr Heuer (her neurosurgeon) stopped into my room to let my husband & I know that since her lesion is skin covered he would give her a little bit of time to grow & we would do her surgery 7/26. The did an MRI & found that she actually had Myelocystocele & her spinal cord was tethered to the cyst in her back. Because of her lesion area & size the 1 side of her rib cage is underdeveloped so she needs some breathing support for the time being.
They did her surgery which took about 5 hours. The best news was she came down from surgery and still had feeling & movement in her legs! She retained her bowel & bladder control as well. We are still in the NICU but today we got the best news... Dr Heuer thinks we still don't need a shunt! So hopefully we will be getting home soon! Our only hurdle now is seeing what kind of breathing support she will need until we can rectify the rib issues. But that won't happen for a while. So now we are just healing & hopefully getting ready to FINALLY GO HOME!
Evelyn's photo session was taken and donated by Preemie Prints volunteer photographer, Sarah Boujais.
A Note From Sarah:
I had the honor of shooting two sessions for this family because this special little girl was having major surgery. I had a session with Evie and her mom before surgery and then was able to go back to capture Evie being held by both her parents after her surgery was complete. It was so heartwarming to see her recovering so well and we all just melted when she was smiling in her daddy arms!!!
Photos belong to our volunteer photographers, families,
and organization please do not use for any purpose.
Preemie Prints is a 501(c)(3) nonprofit organization sharing hope with NICU families through a variety of support programs. One of those programs is the gift of NICU photography and preemie photography. NICU families from across the US can request a no-charge photography session by a Preemie Prints volunteer. The family request from can be found on the right side of our website. These sessions are free of charge and for any NICU family, regardless of time spent in the NICU. The NICU photo shoot can take place inside the NICU or after baby is discharged and at home until their 1st birthday. Facing time in a NICU with a premature or critically ill baby is an extremely difficult time for families. Preemie Prints has a mission to share hope by letting families know they are not alone. Preemie Prints currently has over 100 volunteers nationwide. We are always looking for more volunteers to share in our mission! If you are interested, please email firstname.lastname@example.org and visit our website at www.preemieprints.org. To date Preemie Prints and our volunteers have gifted over 400 NICU family sessions.
This was a Preemie Prints NICU graduate or NICU photography session that took place near Philadelphia, PA.
We're thankful to the family for sharing their story & memories in support of other NICU families.