Saturday, October 24, 2009

Capillary Venous Lymphatic Malformation and us

First of all, if you prayed for us THANK YOU! We felt those prayers. I am not going to go into details before the trip because most of you know that Anna Grace was diagnosed with Lymphangioma at 20 weeks. This was a very scary day. At birth we were expecting a NICU stay but our strong little girl would have nothing of it. She was doing great and we came home two days after birth like normal. She has thrived. Nothing has stopped her at this point. Our next step was to go to Cincinnati Ohio for a MRI and meeting with her medical team (and by team I mean TEAM!) They are incredible. So here is the outline of our trip, her diagnosis, and our feelings about it. Feel free to ask questions and I will answer them to the best of our ability.

On Sunday, October 18, we headed for Cincinnati or Cincy as we came to know it. She did so good on the trip up and I was a proud Mama. Sunday was spent figuring out how to get to the hospital and checking into our hotel.

Monday- Anna Grace was fed at 1:30 am for the last time until after the MRI. I expected a major meltdown in the morning but she was terrific. In fact I couldn't get over how well she handled it. Once at the hospital, Adam and I took her back for a check in. She actually fell asleep ( I am telling you the prayers were working!) We were given details for the MRI and then we had to LEAVE our baby awake. It was so hard to walk off knowing she was about to stare at strangers and be scared to death. The MRI lasted two and half hours. Bless her, when she was done she couldn't keep her temp high enough to go home so she got to hang out in a heated blanket thiing. When she saw Adam and I you could see it on her face. It was priceless. She did well all day, pretty groggy but we were able to go to dinner at Dewey's pizza.

Tuesday- At noonish we met with her team. An incredible group of doctors who are in love with my child. Anna Grace was diagnosed with Capillary Venous Lymphatic Malformation. I will break it down for you. Anna Grace has a large wine colored spot on her left side. It takes up her whole side. This is the Capillary side. She also has some blueish markings that are her Veins, hence the Venous. Lastly, the Lymphatic. Her Lymphatic system did not develop completely. On her left side its between her skin and muscluar wall. She also has some fluid internally thru her lower tummy and on her little bottom.

What this means for Anna Grace: For now, she is doing very well. As if, she had no issues. So for now we will monitor her. She will deal with this for most of her life. We will be going to Cincy twice a year for her to visit with her Doctors and will begin Physical Therapy while she grows to make sure she can handle the extra weight on one side.

Many have asked about another child for Adam and me. I did have a tough pregnancy and this has been the hardest thing we have ever dealth with but I can assure you if God has another child planned for us we would be delighted! The chances of another child having this problem is the same chance Anna Grace had, very slim.

Developmental, Anna Grace is right on track. She doesn't have much desire to roll over but can do it. Other than that she is doing great.

Please feel free to ask any questions that I have not answered and we will continue to keep you updated with her progress. Again, thank you for praying! Check back soon for an update on eating cereal and bouncing!

3 comments:

Kelly said...

Im so happy to hear your trip to Cincy went very well. Im sure you and your family feels alot better knowing more about what is going on.I had much relief the day we met with the team as well. They are amazing! I'll continue to pray for her and your family! She is a very beautiful and blessed little girl.
Kelly

Nena said...

I believe God placed Anna Grace in your's and Adam's care because He knew how special you two would be as parents. He knew you would turn to him for His guidance and between the three of you would be able to bring more people to Him. Seeing AG's progress and the fact that now of this has effected her is a miracle. I always look forward to my "Grandma" time with her. I love you all.

I3rittany said...

Hi, I just wanted to say that I am very touched by your story and your faith in God! [= I am a student nurse at Xavier University in Cincinnati and am doing my pediatrics rotation on the oncology/hematology floor! Tomorrow I will be taking care of a patient with the same diagnosis as your daughter, so I searched this diagnosis to become familiar with it and your blog came up! I am very happy to hear that you were very pleased with Cincinnati Children's as I look forward to each clinical day there and may even want to work there some day! Anyway, I just wanted to say that your daughter and family will definitely be in my prayers! I hope that your journey with her and the rest of your family (and possibly another one to come someday?) will be filled with many blessings! I hope that you have a wonderful Thanksgiving as I see that you are already very thankful for what God has given you! Take Care and God Bless! (:

Brittany