Cath Lab Tour, Wolfson’s Children’s Hospital

At our last support group meeting (5/15), Mended Little Hearts of Jacksonville, (Susanne Hodge, Coordinator, 904-868-4907, sairahmom@att.net) we did a tour of the cath lab and the different cardiac areas for children to be screened /diagnosed for various CHD’s. It was an amazing experience. Cael also enjoyed it and partook in some of the activities.

3D UltraSound - It is FOR SURE a GIRL.

Well we had our 3D U/S on Saturday and boy oh boy this little lady has a personality. She was fine for the first 20 minutes of probing, but after that she said I am done and flipped to the back, we got several nice shots I think. The place we had our 3D images done, invited us to come back in 2 weeks to see if we can get better shots, so here are some for now and know that more will come. She looks so pretty, Craig is all excited because she has my nose! Lol

Cyst May be NO Match!

We had our visit with our OB specialist today and finally some good news. Ryleigh was diagnosed with Dandy Walker Variant at 22 weeks due to a large mass (cysts) in the back of her brain that measured 8mm. They told us today that her measurements are on track she is about 29 weeks along and weighs in at a fantastic 2 pounds 13 ounces (13 is my lucky number by the way), also they detected that her brain cyst has shrunk from 8mm to 6mm!!!  Wahoo, this is great news.

It is always concerning when two major body systems of a fetus are showing signs of malformation and while we are not out of the woods yet with the brain, the good news is it is shrinking. We have our fetal MRI on Tuesday (5/15) then we meet with the neurosurgeon to see the prognosis and possible outcomes in the next few weeks, which now I have hope she won’t need brain surgery!!! I am elated!

Her heart issue obviously won’t change and we will be facing the surgery/recovery/ and lifelong challenges of having a child with CHD, but if we can get the brain system taken care of – it lessens complications!

Some joy and hope to share.

Latest Update on Ryleigh 5/09/12

As I posted earlier at our 18-week visit our fetal OB specialist informed us of a brain malformation that Ryleigh has, at the time they were diagnosing it as Dandy Walker syndrome. At our 22-week visit they downgraded it to a brain cyst that is a Dandy Walker variant, which I have already posted on that and will not bore with the details again as the symptoms can be a wide range of things. Well they called us this week and set up an appointment for next week (May 15) to have an MRI scan of her brain done so we can see what this cysts is doing and what the prognosis might be (they can do this while she is in the womb, amazing!). Once the results are ready we will be adding a new doctor visit to a list, a pediatric neurosurgeon to discuss options (if any). 

Just when I had a moment of peace with the heart defect, I got hit with this, my world has flipped yet again, but amazingly we are coping. I try to find things to look forward to these days and my positive aspect is I am looking forward to our voluntary 3D scan of Ryleigh this weekend; we will get to see our sweet girl in detail and on video live!  I cannot wait, just in time for mommies day!!!

We are meeting with our fetal OB specialist this Friday to see if anything new has transpired and to get her fetal measurements (fetal cardiologist visit isn't again until June 5, the next one we get to meet the team of surgeons who will save her life!), I am hoping she is at least 2 ½ lbs, more would be great! Update and 3D photos to follow soon.

Be well friends!

LA, Craig, Cael, and baby bump Ryleigh

Final Countdown

Whew we did it, finally made it to the final trimester!  Time is flying! Here is a new belly shot! She will be here sometime in the next 9 to 11 weeks! Cael is beyond excited, he asked me today if we can go pick out a toy for Ryleigh that they can play with together! Warms my heart!

Ryleigh's Mural

I finally got to paint Ryleigh's mural, Craig just loves it. I will share a few photos. Basically, it is a Heart Tree, the hearts are red and blue, which symbolizes the good and bad blood that circulates in the heart, right now due to her defect the good (oxygenated) and bad (non oxygenated) blood are mixing, which is NOT good (see photos of a normal heart - red and blue, then a Trucus Arteriosus heart - mixing colors making purple. After her repair her heart will function properly, until the next fix is needed.

Marching for Ryleigh

This past weekend we participated in a March of Dimes walk initiated by our dear family friend, Katy Brown. She organized a team of walkers to participate in the 5K walk to raise money for the March of Dimes organization in honor of Ryleigh, our sweet baby. We had a great time. Our other dear family friend, and participant, Samantha Schooley had stickers made up that said "I walk for Ryleigh", of which Craig posted on about every sign he could find. Hahaha

Cael even walked the 5K with us without a complaint (he did have his two BFF’s with him, Garrett and Zachery).  We are so fortunate to have such wonderful friends who are always finding ways to give back. Here are some photos of our shirts we made in honor of Ryleigh for the walk and some photos of us all at the event. By the way, this 5K walk raised just over ¾ of a million dollars for the organization, it was fabulous to see all of the supporters from all over the area supporting and marching for babies born premature or with defects. If you want to know more about them here is their site: http://www.marchforbabies.org/