Yesterday, George received an early birthday gift from his grandparents- what a surprise, indeed!
Week 7/ Day 50 in NICU: Our precious little Shiloh has a *very* rare genetic condition called Cri Du Chat or 5p- syndrome. She is missing part of the short arm of the fifth chromosome. This causes physical, intellectual, and health challenges. We did not give this to her and it can’t be passed on to our future children. It was a de novo event, meaning that it happened randomly at conception.
I wish I could say I didn’t cry when we received the diagnosis, but I can’t. I SOBBED for a WHILE. I did the whole “why us” and “this is not fair” thing. To be completely honest, I am still coming to grasps with it. Her NICU journey hasn’t been easy so I knew something was going on, but it was easy to blame it on her being IUGR and preterm. I also never would have thought that she would have a condition that causes developmental delays. I feel almost hypocritical for crying, given my love of all people, especially those with disabilities.
I suppose I was mourning the loss of the daughter I thought I had, even though she is EXACTLY as she is meant to be.
To make it even more shocking, it took EVERYONE by surprise because this wasn’t even in the realm of what the doctors were looking for. We were transferred to the NICU at TCH because they thought she had a condition involving her liver.
I had to realize that Shiloh didn’t change. She has always had Cri Du Chat. That does NOT make her less desirable or less worthy. Even if I had known during pregnancy, it wouldn’t have changed a SINGLE thing. She is made by God and is beautiful, lovely, and worthy of a fulfilling and wonderful life.
When I looked up this syndrome online after receiving the diagnosis, I was scared and shocked. The prognosis looked pretty grim and all that I saw were negatives. After talking to parents who have kids with Cri Du Chat, I have realized how WRONG a lot of the information is that is online. Cri Du Chat is a HUGE spectrum and is varied greatly from individual to individual. I have also realized that these kids (& adults) are pretty freakin’ awesome. (CONT)
For more stories, Click link in Bio, and on www.ourlittlepreemie.com
| Having multiples comes with a lot of high risks. One of them is premature birth. My babies were born at 28 weeks - 12 weeks early. They were all under 2lbs.
Here is Brooklyn's diaper from the NICU placed next to my debit card. Tiny, right? But get this, Bella and Bailey had ones even smaller than this!
Cold, flu, and RSV season is approaching. Please be mindful of your interaction with preemie babies- especially babies that aren't yours. They're too tiny for your germs and a simple cold could kill them. I know it may sound harsh, but as a mom that lost a baby, I have no time to sugarcoat anything to make people comfortable. Reality is, babies can die from adults making careless mistakes.
What are you doing to prepare for RSV season?
HANDS UP if you’re just surviving. Or doing your best. Or cutting corners because life is hard. Or just really ready for the weekend.
Dear pre-eclampsia, THANK YOU. Yup, you read that right, thanking a terrible thing. Without pre-eclampsia I would not have my sweet William I have today. With the diagnosis of AEDF at 22 weeks, there was no way to know when the blood flow would reverse and we would lose William in stillbirth. Unless I admitted myself to the hospital to be monitored 24/7 there are no signs of blood flow reversal. We had chosen not to do this as William was well under 1lb and most likely would not survive at 22 weeks and started an experimental drug instead. Fast forward to 25 weeks...the day I was admitted with pre-eclampsia was the day that the blood flow reversed and forced an emergency c-section (in which William was born 9 minutes after making the emergency decision in my room...whoa!) . So in part I thank pre-eclampsia for forcing a hospital admission and monitoring because if I weren't there that day, William wouldn't be here either. #preeclampsia #preeclampsiasurvivor #handforscale #micropreemie #aedf #pregnancy #preeclampsiaawareness #preemie #nicu #25weeker #william #fighter #miracle #believeinmiracles #preemiepower #nicugrad #nicuwarrior #ivh #survivor #moose