Saturday, April 7, 2012

What The Future Holds

I have been wondering about a way to start this for days now. I wanted a way I could write down my feelings and share our experience with our family and friends. I also want to invite others who may be experiencing a similar situation....

My name is Renee and I am 29 yrs old. I have been married to Matthew for almost 6 yrs. We had our 1st son Eli on 10.28.08. He is my everything :) We have a furry bully, her name is Libby. After about 3 years we were ecstatic to be expecting our 2nd child. The 1st 14 weeks were very trying, extreme nausea/vomiting, near syncope spells, a subchorionic hemorrhage (SCH), low lying placenta, and then a heart abnormality noted on my 16wk u/s. I was then referred to Riverside Maternal Fetal Medicine (FTM) to see Dr. Minginone (Dr. Matt), which unfortunately we had to wait a L O N G 3wks. We had our appt on Tuesday, April 3rd- this day has forever changed our lives......

We had our level 2 ultrasound done with Dawn and she pointed out as we knew there were some heart abnormalities. This scan was to measure everything from head to toe. She would continue to take multiple pics of just the heart. We did find out it is a BOY, his name is Ethan Matthew. He is a Wolfe boy for sure, would not sit still long enough for Dawn to get a good picture of anything. The scan took a little over an hour. Immediately after she was done, we waited for Dr. Matt to see us. He came in and introduced himself. He was very kind and straight forward. He personally scanned the baby and viewed images himself and said he had some additional concerns he wanted to address with us. He noted the baby did have a congenital heart defect known as a complete atrioventricular septal defect (AVSD). Then he proceeded to say, unfortunately I am certain your baby has Down Syndrome. Right now he has 3 markers for Down Syndrome (DS), the heart defect (which accounts for 40% of DS), flat nasal bridge, and hypoplasic mid phalanx of the 5th digits of the hands. Everything else check out fine, ventricles in the brain, bones, abdomen, ect. We opted for an amniocentesis. This would give us 100% confirmation of the diagnosis. They needed to do the procedure anyways d/t increased fluid and could not see all the organs clearly. The procedure wasn't bad at all. I've had worse menstrual cramps and those last a ton longer!!

So from that point on Matthew and I were in complete devastation. I never heard a single word after the amnio.Every possible thought was racing through my head. Not to mention the fact our son will have open heart surgery before he is 6 months old if not sooner. I could not stop myself from crying. They were very kind and gave us lots of information, but I was just not ready to hear everything. We will have every 2 week appointments rotating with my primary OB/GYN Dr. Barnhart and then at Riverside. I was given a referral to a cardiologist from Children's thankfully I will see them at the MFM office. We have our next appt scheduled for May 3rd. We will have a fetal echocardiogram and another level 2 ultrasound.

Why us, what did we do to deserve this, how are we going to care for this baby and both work full time... It took me many days to get a hold of myself and just grasp what exactly is going on. We have a very strong family and friends. Thankfully we have great doctors that keep in contact with us for any questions or concerns we may have. We will get through this and Ethan will be loved just as a typical baby would be loved.

For anyone who may read this. I do want you to not feel sorry for us or Ethan. But to love him and support us throughout our journey. I will continue to post updates through the website, so please feel free to follow and comment. Love you all!!


  1. Love him already! I hope this is a good outlet for you and lets you sort out your thoughts. <3

  2. You guys have picked the perfect name. Matthew means a Gift of God and Ethan Matthew is our gift!

  3. Ethan also means Strong as well :)

  4. Can't wait to give Ethan hugs and kisses from Nina!

  5. Wow, Renee, thanks for sharing your beautiful thoughts! I love your statement about not wanting pity from others, life isn't supposed to be easy, but I think we still want it to be. I'm so excited to meet Ethan in a few months!