Surgery!

Surgery has been scheduled for Ms. Lily on Monday, February 16th. We go for our pre-op visit on Friday the 13th. I am starting my list of questions so that I can call the nurse on Monday for clarifications. Start the prayers now, we are all going to need them.

Four Months!

Lily at 4 months


Grace at 4 months

Lily reached four months and almost 14 pounds this past Friday. She seems to be doing fine. She has been giving her Grandma Suzanne a run for her money on the days mommy works. Her acid reflux seems to be acting up again and it looks as though her dosage needs to be upped, acid smelling breath, heavier spit up etc. Tomorrow I call the cardiologist to find out if she should go ahead and get her shots ASAP. (the shots have to occur more than two weeks prior to the surgery or they have to wait until at least two weeks after.) The surgeons and doctors, 25 in total should review her case and all her films tomorrow evening at their weekly meeting, didn't happen last week due to the holiday.(MLK for those not in Georgia whose life doesn't revolve around this holiday.) From there I am not sure what happens to get to the surgery point. I will find out tomorrow more when I call, for now focus on four months.

Lily likes to face the world, she wants to see everything her big sister does. She also smiles the biggest at her sister and cries when Grace gets out of the car at carpool. She likes sitting up like a big girl and is constantly building those stomach muscles pulling herself off of leaning on things - mom, dad, bouncy seat etc. She loves sitting on mommy's lap at the dinner table, she can see and gets very excited at the food coming towards mommy. Maybe she will be a good eater, unlike Grace. We are all looking forward to starting some solids in hopes of more sleep and less tummy trouble. She is still enjoying her swings, and sleeps in them from time to time. (yes she has two, one upstairs and one down, seems to be the most calming for her outside of someones' arms. She loves to reach for faces and her toys on the changing table. She still hates car rides, we are not sure if it is her stomach being upset or the fact that it means she is on her way to the doctor. She is still homebound - trying to avoid those pesky germs. I wish we could all be in a bubble to keep those germs away, but for now, we all change clothes when we return home from work or school and wash our hands until they literally bleed. She loves to talk and is experimenting with her voice. We call her the monster baby when she does her little growl. She seems to like the way her voice sounds. The funniest is how she "answers" to Grace talking about anything. Grace will be talking to either Tom or I and Lily will then fill in the spaces between Grace taking a breath.

Grace is still in love with her little sister. She loves to love on her, kiss her and talk to her, until the fussing starts. Then Grace says "mommy, lily is fussing again." Thanks couldn't hear that for myself, driving the car trying to race home before the hysterics start. Anyway hopefully one day, my house will be clean, we will all sleep a minimum of 8 hours and the washer and dishwasher will get a break. Until then, we are trying to enjoy our "family days" and all the other times in between. I will let you all know about the surgery when we do, keep those prayers coming.

Smiling with sister.

Cody after his bath

Thank you!

Just a quick note to let everyone know how thankful we are for all the prayers. Lily completed her MRI today. While we still do not know the results or when surgery will be we are very greatful. The anesthesiologist who specializes in cardiac pediatric patients was truely an awesome doctor. He was able to soothe our fears and took wonderful care of our little baby girl. She did great and woke up to flirt with all the doctors, nurses and even some "fellows" - docs in training. Even after enduring hours of not eating, the MRI and cold rooms, Lily held still for yet another Echo of her heart. Everyone was very impressed with how good she was. Everyone also kept telling us how beautiful she is. Our hope right now is that the surgery is still a ways away and we can all have fun playing with this bright smiley baby. For now we all need to rest as we were up at 4 driving by 5 and at the hospital from 6 til 11:30. Grace also got up before we left for the hospital - she is not wanting to miss anything and feeling a little jealous of all the time spent on Lily. Hopefully her cousin Faith will get to visit this weekend and do some fun things. Here is to resting up and trying not to harp on the doctors to get us the info.

Merry Christmas and Happy New Year!

Well it has been two weeks off of work and a whirlwind of activity. We actually completed Christmas shopping, cards, and had all the gifts in the appropriate places before Christmas Eve. This was nothing short of a miracle. We have been house tied with Miss Lily, only going to Doctors offices, which made shopping difficult. Even online shopping is difficult when one hand is holding onto a small behind, so that she would sleep. Lily's early christmas present to Mommy was sleeping for four hours in her basinet. Up until this point she would only sleep for extended periods on Mommy. This was a step in the right direction, thank you Dr. Fearing for suggesting adding rice to the night time bottles.

On Christmas Eve, Grandma, Papa, Aunt Anna, Taylor and Uncle Jason came over for dinner and Christmas cookie baking for Santa, plus that whole not leave the house thing. We had a great evening until it came time for Grace to say goodbye to the Elf Kirsten that Santa let visit us for a month. Kirsten had caused a lot of mischeif in our house, playing with Grace's toys at night while she was sleeping, even playing on the computer and leaving Grace a message. When it came time to say goodnight, Grace cried so much that Kirsten got to go to bed with Grace until Mommy and Daddy went to bed. Grace can't wait for next Christmas when she can come back.

Christmas morning Grace and Lily woke up to a tree full of presents. Kirsten had even told Santa of a late addition to Grace's list of a cupcake maker. Lily was excited to watch the hour unfold as Grace unwrapped her and Lily's presents. We then had some tasty monkey bread and formula for Lily. Then it was time to get ready to go to Grandma's house. In the meantime, Lily put on her second Christmas outfit and an hour later as we were preparing to depart threw up all over herself and Daddy. I didn't even get to take one picture of her in it! Oh, well. We then drove with Lily screaming to Grandma's house. (It seems our youngest daughter only gets in the car to go to the doctor and doesn't like it. We had tried a few nights earlier driving around the neighborhood to look at lights, after 10 minutes Lily and I were at home while Grace and Daddy drove around.) We had fun at Grandma's house, eating, opening more presents and conversing with our family. Grace and Taylor enjoyed playing together with all the new toys, mostly what the other one got, but you know. The best was seeing Taylor bounce around the house on the bouncy ball that we bought him and blew up so that he could play with it immediately. He went around the house saying "Taylor's ball"

The next day we set up the brand new TV 40 inch flat screen, not my idea, but a good deal none the less. However in order to do this we had to purchase and put together a new tv stand, move the old one and tv upstairs, try not to kill Papa and the neighbor helping us while moving and buy a HDMI cord. After setting all this up we could then set up the Wii permanently for our amusement. It seems a five year old cannot play the Wii without extreme amounts of jumping, running and falling down on the ground. She has gotten better as the days pass, but it is extremely amusing. Her favorite games so far are the Disney Princess game and the Barbie Island Princess game - notice the trend. One evening she was showing her grandparents a game, she was squealing, Tom and I were trying to help her and Lily was loudly cheering her on.

As for the rest of the holiday break, we have spent it, trying to sleep, cleaning up vomit, doing the laundry (vomit is hard to catch in an easy clean up place.) and watching Lily grow. Grace has always been very verbal, she came out trying to talk. Lately Lily has come into her own. She enjoys talking to you when you are on the phone talking to someone else, talking to the tv especially the Imagination Movers or any red jersey football team(by the way she really likes the vibrancy of the new HD TV) and her sister and daddy. It all ends tonight, back to the grind tomorrow for daddy and mommy. School starts on Tuesday. We have a little more than a week to the MRI and then we will hopefully know more from there. We will try to keep you posted but time keeps moving and I find less and less of it at the computer as Lily is over 12 pounds and not as still as she once was.

Lily at 3 months

Grace at 3 months

Lily at 3 months

Grace at 3 months

Today Lily is officially celebrating her third month. As we look back at pictures of Grace we realize how much they do look alike. One thing is for sure Lily lights up whenever her sister is in the room. She even smiles in her sleep when Grace is talking. Grace is an excellent big sister. She helps mommy and daddy. She loves to hug and kiss her sister and has given her several nicknames of which I cannot spell or say correctly - one sounds like giddy girl, this one she repeats over and over until Lily smiles. Lily is doing remarkably well for someone with so many visits to doctors and hospitals. She weighs 11 pounds and 14 ounces and is 21 1/2 inches long. She eats all the time and is spitting up less thanks to the wonders of prevacid and mylecon. I say this even though she vomited all over me and the floor this morning. We will be going to Childrens Hospital at Egleston on Jan. 13th for her heart MRI. The surgery will be scheduled after that. Untl then she is on restricted visitation and doesn't get out much, too many germs. She loves to snuggle and play with her swings and bouncy seat. She is looking forward to her first Christmas and time spent with her family.

Happy 5th Birthday

Last week we celebrated Grace's 5th birthday. She started the week off on Monday being star student. I was able to go watch her present herself on a poster, that we had spent the Thanksgiving holiday working on. She was great. She read the words on the poster she had told me to write. She pointed out the pictures, who was in them and what they were doing. She allowed each of her classmates to ask a question and didn't say anything when they seemed to ask the same questions over and over. I taped the whole thing and kept thinking, she is getting so big. On Tuesday, the actual birthday, we drove her friends to school along with 18 special ordered frosted cookies(mom has too much going on to bake.) She wore her special birthday girl necklace and the crown her teachers made her all day. I snuck out of my own classroom to pass out the cookies and sing happy birthday, where Grace stood on a chair looking proud as could be. After school we went to Ballet where Grace wore the necklace and crown and her friends sang Happy Birthday. When we got home Grandma and Lily were excited to hear all about her day. That evening we had a special dinner of Chicken Nuggets, Fries and lemonade from Chick-fil-a with Grandma Suzanne and Papa. Grace was even lucky to have Grandma spending the night. (This was for a different purpose - Lily and her not procedure - that I will not discuss now.) Wednesday and Thursday she got to ride to and from school on the HUGHES bus - Thank you Mrs. Lara. Grandma also spent Wednesday night to help out. On Thursday Grandma Terry and Popop came into town for the big weekend celebration. Grace got to open presents including the crayola magic light paint set, a cot with sleeping bag, a book called Grace For President where a little girl named Grace Campbell runs for class president, and several other things that are littering the family room. Friday Grace spent the day playing with all her new toys and Lily, Grandma and Popop. Then the big day came, the day of the party. We had her party at Pump it UP. It was fantastic - all inclusive 1 1/2 hours in the jumping room and 1/2 hour in the party room. There were small children bouncing, sliding, climbing and running all around(some adults too). Taylor my nephew would cry whenever he couldn't find "my Gracie". At one point Grace ran up to me, gave me a huge hug and said "I am so glad it is my birthday!" With a kiss she was off again. I can't tell you how much I needed that. All in all I think she had a great birthday week.

I can't help thinking about how 6 years ago, I was praying for God to bless me with a child. It had been a rough 2 years of unsuccessful treatments and heartache. And now my first baby is 5, going to Kindergarten next year and brings me joy everyday. She is so kind, loving and full of God's Grace. Since her birth there have been some dark and sad days and unbeknownst to her she has helped many people to feel better about what is happening. She is the best big sister I know. Lily lights up like the Christmas tree whenever Grace is in the room. Her spirit is infectious and I am so glad that I have the opportunity to raise this wonderful child. She continues to make me proud. The only words that I can use that seem so inadequate are - I love you Gracie Pippers!

continued prayers

Lily did NOT have a heart catherization and valvuloplasty this morning. Before beginning the procedure another echo or heart ultrasound was done where the doctors determined that it was not her aortic valve but the area above the valve. This means that somewhere in the next couple of months she will most likely undergo surgery to open the area to reduce the pressure put on her heart. This is major surgery, but may be a better diagnosis for the long run, only one surgery versus multiple. The surgery is called a patch and we will let you all know more when we do, not until sometime next week. As for now the doctor said to treat her as a normal baby. Thank you for all your prayers. After spending the day at Egleston we feel so lucky to live near a major heart center such as this. The nurses, doctors and technicians were all wonderful. We ask that you continue to pray for Lily and we will keep you updated as best we can.

Tom and Sarah