special needs

Looking back at this blog post tugs at my heart so much. I did not know that the day this was posted, was just two days before we would have to say good-bye to our precious baby girl. I miss her so much, but I thought I would share with so many of you who may be going through the same struggles as we(me and Shane) once were.

Here is the original post:

We have two living children, and one angel in heaven, our son Lamar. When we found out Lamar had Trisomy 18, it was our first time getting pregnant and we never knew any of this could happen to us as we are both in our early 20’s. We did so much research on it, and when we lost him on July 14,2012 it was the hardest thing we had ever had to deal with–well so we thought. Fast forward two years we had a healthy baby and the genetic counselor told us we had a 1% chance of ever having a baby with a chromosome disorder again.

On June 26th, 2014 we found out we were carrying yet another baby with a rare genetic condition called Trisomy 13. This condition happens in about 1 in every 10,000 newborns. It is where there are 3 copies of the chromosome 13 instead of two (the usual). When the extra genetic material is attached to the extra chromosome it is called translocation. Our genetic counselor stated there was no translocation. In other words, this means that it did not come from Shane or I (inherited), instead it occurred when the sperm and egg formed the fetus. With this condition the babies statistically do not live past birth or the 1st month, and if they do, they usually pass away before turning 1.

Knowing all the information that we do know about Rchelle’s condition, when she was born on November 6, we didn’t know how to act. All we knew was that whatever happened, we planned to show her just as much love as Brielle (her older sister).

We chose to bring her home from the NICU after staying in there for 2 1/2 weeks as she was stable and doing great on oxygen(for comfort measures due to her lungs being small in size). She also has a feeding tube in her nose that lets her grow and be at home before needing the feeding tube surgery (g-tube).

No, it has not been easy by any means having to deal with a feeding pump, checking the placement and the residual of the NG tube before each feeding, making sure her oxygen concentrator stays at 0.25L (especially with an 18 month old who likes to change the settings), and to make sure her dressings/tubings stay on her face and don’t get pulled (Shane accidentally found out how easy it is to pull out the NG tubes the hard way–twice), and just monitoring her for any minor changes she may be having, but honestly we wouldn’t trade it for the world.

We try not to think about how long Rochelle may have on this Earth, but instead spend the time cherishing our sweet perfect girl. There is a small percentage of kids with Trisomy 13 that have lived long lives and had successful surgeries, and that is why we stay hopeful. Our baby girl is such a fighter and the doctors at the hospital told us she isn’t even suppose to be living with the battles she has faced so far.

All the prayers are truly appreciated that have been sent to Rochelle. She is an amazing, gifted, precious, chromosomally enhanced girl that we can’t wait to share with the world. To all the moms out there who have a chrosmomally enhanced child, know that God put them in our lives for a reason. Cherish each moment, and stay as strong as you can, they need us and we need them.
Here are a few pictures of Rochelle 🙂