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!

Been Busy!

Ok so I have been a little slack on updating but I am going to get better. Anna Grace is growing like a weed. She babbles on all day and is becoming a busy body. Right now she is screaming her little head off because she wants her Daddy to walk around and bounce her and well he rufuses. If he were to stand up she would stop crying. I seriously need to get this on film. :)

We went to the pumpkin patch on Saturday and picked out Anna Grace's first pumpkin. She loves the outdoors so of course this was a hit!



We leave for Cincinati on Sunday. Everyone is nervous for the trip. We are tying and praying hard to stay well. Our trip was postponed in September due to Anna Grace's first cold. It was hard but I knew it was God's timing. Please be in prayer for us as we make this trip. We will be getting lots of information and it will most likely be overwhelming. I promise to keep my blog, facebook and twitter updated while we are there.

Here is our pumpkin sitting up in bumbo. I think she grew 3 inches the first time I sat her in here.



I am not sure who "won" but AG quit crying and is slowly falling asleep. :) Daddy will call this a victory I am sure!

Fan Day and summer pictures

Adam and I took Anna Grace to her first official Clemson fan day. She did really well. Apparently her big orange bow caused a stir. People kept stopping us about it!



Anna Grace and Uncle Caleb will be working on tackling very soon. Caleb can't wait to get her dirty. :0



I love my Daddy



I love my bows too!



My wrist rattles are a hit too!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I did not pray nightly that my child would miraculously sleep 12 hours.

I did not shove some clothes into the closest just to make the bedroom "look" clean for my sanity.

I did not leave a poopie diaper on AG at 2:30 am when she just fell back asleep.

I did not break down numerous times today at numerous doctors visits.

I am sure this will become really fun when AG is older and doing things that I do not want her to do.

So what did you do this week that you would "not me!"

Cincinatti Update

First off, thank you all for praying for us so much during this time in our lives. We firmly believe God has a purpose for Anna Grace. She is a tough little cookie. She undergone ultrasounds, blood draws, and a few other tests that make even strong men cringe and she has done so well. Adam and I can feel God carrying us through this time in our lives.

We will be leaving on September 13th to drive to Cincinatti Childrens Hospital. On the 14th Anna Grace will under go an MRI. She will be sedated and possibly intubated because she is so small and young. This will be overwhelming for Adam and myself. The MRI will be done of her head and abdomen. In the recent weeks, an unltrasound found white spots on both of her kidneys. These spots are possible signs of another problem not linked to the Lymphangioma. A test was done of her renal function and her kidneys are functioning properly. Praise the LORD!

On the 15th, we will meet the surgical team to discuss possiblities. Please be in prayer for us as we will be given her diagnosis and plan. Again, we know God is in control.

Our specific prayer requests are:
That Anna Grace travel well. We will be driving and I am nursing her so this will call for frequent stops.

An easy sedation and fast MRI and recovery. She should not have to stay in the hospital after the MRI.

An easy diagnosis that can be fixed with as little surgery as possibly. Also that this can be done in Greenville instead of Cincinatti.

Most importantly pray for God's will to be done in her life and ours and that we may glorify Him. He chose us to be her parents and he knit Anna Grace together. No one knows how well her body work better than Him.

While we are gone we will be updating facebook and twitter. You can follow us on either. We plan to drive home on Wednesday. Thank you in advance for all the prayers you will be praying for us.

2 Months old

My sweet little lamb I cannot believe you are two months old! You had your shots yesterday and did so well. You and Dr. Phillips had a thrilling conversation as he checked you over and proclaimed....My she is beautiful. I didn't need anyone to tell me that. :)

You are 10 pounds 1 ounce and are 23 inches long. You have the prettiest longest fingers and love to kick your legs.

When you sit in your bouncy seat you only show love to the monkey. Poor hippo and lion are always left out.

You still love to be swaddled when you sleep.

Love the baskin robbins commercial with the ice cream and cake song. In fact it is what mommy and daddy sing to help calm you down. Jesus loves me also works.

You are sleeping ok. You keep us on our toes by throwing in a few bad sleep nights here and there but are easy to get back to sleep.

You talk all the time. I know that I am going to get whats coming to me. Word on the street is I talk alot and that My Mom had to deal with my constant chatter. Its ok though I love to her you chatting away.

You have been to Lake Lure already and will visit the beach around your 3 month birthday. After that we are going to Cincinatti Ohio for a few days. ( I will post more about that soon.)

Anna Grace you are a pure joy to your mother and father and everyone else that loves you.

Two babies

Most of you know that we had a "baby" before AG. Last summer I was informed it would take me forever to get pregnant not to rush because of my Chron's disease. So, Adam and I finally decided we were getting a puppy. In August, we found and fell in love with Pepper Jill. She has really been a great dog and was wonderful for me when I was on bedrest. Pep and AG have bonded a few times over licks (only on AG's feet).b By the way, I got pregnant with AG in late September. How is that for timing?

Some days, I have what we call Camp Burgess. Where AG, Pep, and I stay in bed and nap and spend the day together. This comes after a LONG night sometimes. Well Monday, my first official day as a SAHM (stay at home mommy) was a Camp Burgess day.

Here we are all in the bed. I am nursing Anna Grace when Pep jumps up and starts pacing...then shaking. I know whats coming. She has to go potty. I ask her if she needs to go outside and she immediately sits down. Bad sign. She is obeying by sitting when asked so she must really need to go. I potitely tell the dog you are going to have to wait. I was not interrupting AG at that point. My colorful dachshund comes bounding up to the boppy and gets in my face, shaking still, and starts licking me. As if she was saying PLEASE, right now!!

Fortuantely AG finishes and I jump up to take Pep before Camp Burgess gets peed on. :) We all go outside which is another blog in itself. Pepper won't GO potty. I couldn't believe it?! I thought I would kill her. :) She is pulling me and AG around the yard after birds and squirrells. Maybe she was telling me she really needs to walk?