We are having a great break so far. Yesterday and today me and Lilly got to spend the whole day together, no distractions. We went to Papas and cleaned a little. We even cheered for the Dallas Cowboys with our new attire that Uncle Marcus gave us.

Today we played, went grocery shopping, and Ahead start came to work with Lilly. They said that she is doing really good, but an occupational therapist is coming to work with Lilly's arm strength in January. Right after play therapy, Lilly passed out. She was exhausted after her "baby yoga."

This week is going to be busy for us, I have a dentist and doctor appt. and Lilly has a synagis shot and endocrinologist appt. The endocronologist is going to test her calcium levels to see if they have changed at all. Let's hope that everything is still ok. I am loving being out of class and being with my little angel everyday. Her personality is really changing and developing. She is such a carefree baby and always goes with the flow. I am very excited because this Thursday we are going to start eating cereal! We've been wanting to start this for awhile, but have been putting it off. Lilly is starting to wake up every three hours to eat, so we've decided to give her cereal at night to help hold her over. I am nervous about starting foods because I know that children with DiGeorge can have difficulties eating. She doesn't right now as you can see haha. Solids might be a different story. Until next time...

Outerbanks

Photos from our trip to Outerbanks

Lilly and her friend Kyla on Halloween.

I just know she's thinking "what are you doing to me."

She is a passie girl

She loves her baby, bunny, and to snuggle.

Wow, it's been forever since we've posted anything. I know several people have been asking. I apologize! We are doing excellent and I have lots of information about Miss Lilly. Well first off the semester is almost over and I have finished my OB, PEDS, and 1st MedSurg clinicals! YAY! Thats the reason for being so delayed.

Well to get started with Lilly...she is almost 5 months old and growing. She weighs almost 14 pounds and is 23.5 inches long. She is now rolling over from her tummy to her back and "talking" up a storm. She smiles at everything and such a happy baby. She barely ever cries (knock on wood). We hope to start her on cereal and juice soon.

Onto her health..we had a scare about a month ago. She was in the hospital for about a week. We thought she had a seizure so we went to the emergency room and they admitted her. We had to go through lots of tests, and everything came back normal, which is excellent, but we still do not know what this seizure activity was. The doctor says that it may have just happened once and may never happen again.....so far, so good. She is growing appropriately and has not been sick other than a minor cold, which is excellent considering her immune system. Lilly's cardiologist says her heart looks great and we do not have to go back for another 6 months.

When Lilly got better, we went to Outerbanks for three days. We had a blast! I'll post pictures later tonight from our trip. We did not really get to take Lilly on the beach because it was way too windy and cold. Me and my sister looked for sea glass, but just found several shells. While looking, Melanie almost got knocked down by the waves, so everytime the wave went out we had to hurry and grab shells and run back. Another hit from the trip was "Swiper." Each night, a fox would come up to our porch and eat food that we left out there for him. All the kids thought he was swiper. We had a long trip back and Lilly was not happy by the time we got home. I had to switch out car seats because after the trip of 10 hours, she screamed everytime we put her in her car seat. After we switched it out, she was fine. How weird! She def. did not want to drive another 10 hours, that's for sure.

I want to say CONGRATUALTIONS to Nicole/Jason and Kelly on the births of their beautiful babies.

Here are some pictures from the past two months. I will post more later tonight when I can get to my camera.

Doctor Appointment Update

We went to the Infectious Disease doctor today and so far, so good. She said that she looks great, but Lilly had to have some lab work done so that they could test her blood for immunodeficiencies. We will find out the results by Monday. If her levels come back low, she will have to be placed on a routine intake of antibiotics to help keep her free from illness. If her levels come back fine, then we will go back to this doctor 1 year from now, unless Lilly gets sick constantly. Please keep her in your prayers as we wait for these results to come back. We still have not heard back from the geneticist, but hopefully we will soon. God Bless

We're sleeping great through the night now! Lilly only gets up once or twice to eat and then falls right back to sleep. It's taken us awhile to get her on a schedule because after her surgery we kind of just let her run her own schedule. She is such an active little girl, who is always cheerful. On Sunday, we took Lilly to get her picture taken and they are adorable! I am so excited to share them with everybody. When I get them uploaded I will post them. If anybody would like one please let me know so that I don't leave anyone out. Tomorrow we go to the Infectious Disease doctor to have Lilly's immune system looked at. I'm not exactly sure what this visit will entail, but I will be sure to update everyone. So far, she has been a pretty healthy little girl. We are still trying to get over a runny nose, but other than that everything healthwise is going great. We still continue to pray for her each day as she develops and gets bigger. She is such a strong little girl.

More pictures..

Hiding behind one of her first smiles.
Sleeping with her bunny that Papa (Charlie's dad) bought her.
Lilly loves the mobile in her crib. I even catch her talking to it sometimes.
All smiles for Grandmama!

Bath Time!

Holding her passie in, now all she does is take it out and sucks her thumb or screams.

She didn't like her first bath at first.

Then she loved it, and stills loves her bath time.

We're getting bigger!

Hey everyone! It's been about a month since Lilly's surgery and we're doing great! Her scar is healing and she is growing more and more everyday. She is already 11 pounds and 2 ounces. I don't know what is in this milk, but she's a great eater! She had her first bath about a week after we got back (I'm going to try to post pictures). Bath time is one of her most favorite times of the day. She absolutely loves the water. She also loves to go on walks each night around the lake that is behind our apartment. We have been busy since school started. I am now going to school and taking clinicals at Greenville Memorial. I am in the mother/baby unit and labor and delivery, which is a great learning experience since I just went through this. While at school, Lilly goes to "school" as well. She is doing great during the day at her "school," she's always so happy when I come to pick her up. We were blessed to find such a wonderful lady to watch her.



But on to her health...we went to the cardiologist about a week ago and he said everything looks excellent. Lilly had an x-ray of her chest and her sternum is healing well and her lungs were clear, so he took her off of her Lasix. We also saw the geneticist and he explained how the VCFS, otherwise known as DiGeorge Syndrome developed. I am going to try to briefly explain it to give everyone an idea if you are interested.



Well it all begins with the genes from the egg and sperm. The genetic disorder that Lilly has is called a "deletion." A deletion develops when the egg is fertilized and the chromosomes are mixing, a piece of one is lost (This is already pre-determined in the egg or the sperm, we do not know which one. Charlie and I are having the same genetics test completed to determine if Lilly's deletion was a fluke or not.) If the piece of chromosome is not recovered, you get what is known as a "deletion." The deletion is on the 22 chromosome in a particular region called q11. Now they do now know exactly what this deletion affects because it is different in each person. We do know that it has affected Lilly's heart and the structure of her ears (which is not a major concern). It is important to know that this syndrome can cause her immune system to not be as effective as yours or mine. She can also have problems with her calcium levels. We have had her levels checked and everything has come back normal, but we will periodically get lab work done to make sure she does not need anything extra. Another area that VCFS can affect is her learning. She may have delayed development. In order to help with this we already have Babynet coming to the house to help work with her development skills. We have goals set up and as we reach these goals, we will set new ones. We will not really know how well she is learning until she gets older, but it's better to have early intervention, than having it too late. If she needs further therapy, such as physical or speech therapy, they will refer us to the appropriate people. This Friday, Ahead Start is going to show me massage therapy. I'm really excited about this.



Our family is so lucky to have everyone praying for us and helping us through this. God has really given us a gift. Lilly has changed my life for the better and I have witnessed it change so many others around her. She is a bright, cheerful little girl who lights up the room she is in. I know that whatever struggles she may face in the future, she will be able to handle with God, family and friends all by her side. God is always with us, guiding and teaching us new things everyday. Everytime she smiles at me I just melt inside and cannot believe how lucky I am to have such a beautiful daughter.

Home at last

Hey everyone! Sorry about taking forever to update, I've been busy with Lilly at home. Yes, we're home! We've had our follow-up with the cardiologist and he said her heart looks great and she is healing wonderfully. He dropped had lasix to once a day because she was getting a little dehydrated, but other than that God is trully Good. We went to the pediatrician today and she is a whole 9 pounds, which is a significant difference since the surgery. Our next appointment will be to get her 1 month shots. (won't be fun). She is awake much more nowadays. She loves to stare at people talking to her. She is now able to focus her eyes and she found her hand. She can't ever decide whether she wants her passie or fingers.

We've been busy with several doctor's appointments, she now has five different doctor's. We will be seeing a geneticist, endocronologist, infectious disease doctor, a cardiologist, and her pediatrician. Babynet will also be coming out the the house each week to make sure that Lilly is meeting her developmental milestones. In the meantime, I start back to school next week and am trying to get ready for that while caring for Lilly. So I'll try to update as soon as I can. God Bless everyone who has and is helping us get through this difficult time.

Sleeping my way to recovery

Lilly is doing exceptionally well. She now has every tube and needle removed except for one IV. She is eating great again and slowly gaining weight. She is sleeping alot, but it's good for her recovery. The doctor said we'll probably be able to head back to Greenville on Tuesday or Wednesday! We're so excited to go home, being in and out of the hospital for two weeks is no fun. We are so pleased with how well she is recovering. We meet with the physical and occupational therapist tomorrow so they can make sure everything went well with the surgery.

Moving out of ICU soon!

Day 2 after surgery, recovering well.

Looking great, today's the day we move out of ICU!

I apologize for not posting an update sooner. Lilly is doing awesome! We are blessed to be where we are with the wonderful doctors and nurses who are caring for her. Yesterday was one of the biggest days for her in regards to recovery. The RA line that goes straight into her right atrium to measure her heart pressures was removed. After this the doctors gave her another echo-cardiogram to make sure her heart was not bleeding from the removal of this line. After an hour they removed the central line that was in her femoral artery and following that her catheter. We got to hold her last night and I even tried to breastfeed her. She had no problems eating, but a little with acid reflux. The nurse said that it should go away with time. She doesn't really know she s had surgery, all she knows is she's hungry and eats too fast. Lilly now only has one IV and the NG tube in incase she needs to be fed or given medicine. Because most of her lines are out we will now be able to move out of ICU to a regular room to further her recovery. I want to thank everybody again for supporting us through all of this! The road ahead of us will be a struggle, but with the support and prayers that we have received I know that we'll be able to get through it. I just have to keep remembering God does not give you anything you cannot handle!

Good News...

Lilly was taken off the ventilator today and is successfully breathing on her own. Her drainage chest tube and IV in her neck were also taken out today. Her blood pressure was high for a while due to agitation, but is stable now. She is finally able to take breast milk - she is getting 6 cc's of milk every hour through an NG (nasal gastric) tube. Her color looks good and she continues to be alert when not in pain/on pain medication. Unfortunately, we still can't hold her due to the RA tube in her heart (measures heart pressures) and central line in Femoral artery; hopefully these will be removed within the next few days (decision to be made by surgeon).

Please continue to pray for Lilly and our family. We are praying that she will be out of ICU within the next few days and moved to a regular room.

Surgery

Today was the day of surgery. We all had a very long night. We stayed up with Lilly pretty much all night except for a few hours when we tried to sleep. At around two in the morning Lilly had her X-ray that would be used as a baseline for her surgery. At around six the Chaplain came and we all had a prayer for Lilly before her surgery. Finally at 6:30 they wheeled her off to fix her tiny heart.



The surgery is going well at the moment. We are receiving periodic updates about her status. The first update stated that she had just been put on the heart lung bypass machine and was tolerating it well. The next update we got the nurses stated that the surgeon was 50% done with the procedure and everything was still going well. Lilly was stable and we would hear back soon. The last update that we have heard is that the surgery is almost complete. The main heart surgery was over and they had taken her off the heart lung bypass machine. They are now watching the bleeding in her heart and keeping an eye on her vital signs. I just talked to the nurse again and she said Lilly is on her way back to the ICU. Thanks for all your prayers! Surgery was successful!!! Please continue to pray for her full recovery.

Loving on Lilly cont.

Today is Sunday and everything is going good! Lilly is feeling pretty good, although still somewhat fussy from not being able to eat. We have discovered that she has a sweet tooth like her mommy because she loves the sweetwater that they give her to calm her down. Most of the day today she was in and out of sleep, sucking on her passie all day. She was goven tylenol twice to help with her fussiness, but all other nutrients and medications stay the same. Her eyes are looking great as you can tell by the pictures, but still have some drainage that needs to clear up. This evening was one of the best in a long time. Charlie and I were able to hold her. I don't think I have ever felt this happy before or ever seen Charlie this happy. I have shared some pictures of us holding her before the surgery. Also there are some pictures of Lilly looking at her new toy that Charlie and Danielle got for her. She absolutely loves it!!! Keep her in your prayers tomorrow for it will be a big day for her. I will keep everyone posted throughout the surgery about how she is doing. We love you all and hope to be home soon!

Stop pinching my cheek!

Loving her new toy from Daddy and Danielle!

My sweet Angel!