Merry Christmas! We've had a busy week!

Merry Christmas! I hope everyone has had a wonderful day filled with family and fun! I know we have had a great couple of days spent with family.

Tuesday Robbie and I met with several people and doctors at St. Vincent's. First we met with a lady from monogram maternity for a tour of labor and delivery and the NICU.  St. Vincent has a level IV NICU with 80 beds. The NICU is set up with pods and each pod has 4 babies. The nurses decorate the pods with the babies names; it was very calm and quiet in there. We met with one of the neonatologists who discussed in more detail the goals for feeding and IV's while she is there. She will need to be started on prostaglandin to keep open her ductus arteriosus  which is a blood vessel that babies have open in their hearts before they are born but close very soon after delivery. This vessel is why Riley's heart is ok before she is born and the problems start after she is born when it closes.

We had an ultrasound and got 3d pictures of Riley which was a nice surprise! We had an echo with One of the pediatric cardiologist who was very honest but also optimistic. He said everything still looks the same and her diagnosis is still hypoplastic left heart syndrome. The last person we met with was a child life specialist at Peyton Manning children's hospital who gave us a tour of the PICU. We learned all about visitation, the common areas, and the rules on the shower and sleeping rooms that they have available to families, All of the families that we passed in the hall had one thing in common, they all looked exhausted! I prayed for those sweet children and their committed parents while walking the halls.

Everyone we met was so nice and I really feel good about St. Vincent's and Peyton Manning's hospital. I know these next 3 months are going to fly and we have a lot to get ready! I can't believe the new year is next week!

Merry Christmas and a Happy New Year from our family to yours!

We SO feel the LOVE!

I wanted to share a little bit of the love and support we've received since finding out about Riley's heart. I found a website of a group called Sisters by Heart. It is a group of women who are all mothers of children with HLHS (hypo plastic left heart syndrome). There is a wealth of information and support on this site including stories of children who are doing well, studies from doctors, and the not so easy to read stories of children who earned their angel wings. We received the most amazing care package in the mail from this group of women! There are handmade items made in memory of children including a sweet little hat, hospital gown, and hospital mask along with other things. Every single item had a sweet message on it of the reasoning for the item. It even had a book just for Lucas :) There is a song written by a Christian singer named Matt Hammitt called "All of Me." His son was born with HLHS and is doing well and he wrote the song for his son. I received the CD of this song in the care package and have enjoyed listening to it even though it is a very emotional song for me. You can listen to it on youtube. I took a few photos to share. 

We also received the sweetest card in the mail from my cousins Joni and Steve in Florida. She sent out a prayer request and cut out all of the responses that people sent to her along with a great note from them. It is amazing to me that all of these people that we have never even met are praying for us! God is so good and amazing!! Thank you Joni and Steve, getting that card in the mail means so much to us! sorry the picture is sideways, we tried to fix it!

Everyone's well wishes and sweet messages on facebook means so much to us! We are truly surrounded by amazing and loving people! Riley's room is now painted and she has beautiful furniture thanks to my amazing dad! We go to St Vincent's next Tuesday for a full day of Dr. Appointments so I will update on how Riley is doing!

Where to start...

         We found out that our baby was a girl at 18 weeks due to a quick unscheduled ultrasound. So when it came time for our 20 week anatomy scan we were excited to see our girl on screen but thoughts that we'd find out something big that day were not there. We were told that our baby girl, Riley Marie, has a congenital heart defect known as hypoplastic left heart syndrome. We met with a high risk ob/gyn that day and they confirmed. Devastated cannot even begin to describe what we were feeling...

         A week later, yesterday, we met with a pediatric cardiologist who performed an extensive ultrasound and Echo on our baby's heart. She was so wiggly during it that the Dr. had the hardest time looking at her heart! She is growing perfectly otherwise and continues to be right on track with growth. They again confirmed the diagnosis and drew us a picture to try to explain what it all meant. To explain it in a very simplified way Riley's left side of her heart is extremely small and underdeveloped to the point where it will never be functional. There is no way to change that but instead she will have 3 surgeries to help the right side of her heart function for the left side. We are definitely still learning and trying to understand all of this. We have decided that I will deliver at St. Vincent's hospital and she will have her surgeries at Peyton Manning's Children's hospital. She will be in the NICU after she is born until her first surgery which is usually within 5-14 days after birth. We learned that there is nothing that caused her to have this and that nothing we did or didn't do caused it. We are truly blessed to live in this time where there has been so many advances with the surgeries as all of this technology around hypoplastic left heart syndrome is only 30 years old and before that the survival rate for these babies was not existent.

           Robbie, Lucas, Baby Riley, and I are beyond blessed with wonderful, loving, and supportive family and friends. The tremendous out pour of love and support already has been overwhelming and extremely appreciated! The news of  Riley's heart is still new and we easily become very emotional about it but we have definitely made the decision to stay positive and realize that God has a plan! The Dr.'s have said that my pregnancy should be smooth sailing and that her issues will begin after she is born so my job is to get her as strong and big as I can before she is born. I have been drinking V-8 everyday to get my veggies and absolutely no caffeinated drinks :) I feel like I need to stay positive not only for my sanity and so I can function everyday but also to spread my positive energy to her! We have decided that Riley's life will be surrounded by yellow and sunshine, inspired by the basket of sunshine that my sweet friend Michelle brought me last week! Her room will be yellow and it will be her signature color :) I have never considered myself someone that would have a blog but I felt like this was a good way to keep everyone updated on Riley so I do apologize for not being the best or most creative writer! We appreciate all the prayers and thoughts we can get along with any advice anyone might have!