Avery's First Christmas- Santa Letter

Dear Avery,
I came for a visit, and was so thrilled to see, you sleeping so well- you’re strong and healthy. I know you are one special blessing on my good list, and as you were dreaming of sugarplums, your forehead I kissed. God has taken care of you from the beginning, and there are so many hearts on earth you are winning. Keep smiling, laughing, growing, and such- you’re a blessing to us all and we love you so much. Until next year when we meet again, I’ll be praying for you until the day’s end. I left some special gifts for you to enjoy, but remember that the meaning of Christmas has nothing to do with a toy. It is all about Jesus and the gift our God gave, He came to the world for our life to save. He is always with you, your mom and your dad, and he will comfort you at times when you feel sad. I will be watching to make sure you are nice, but I know my sweet angel Avery is made of sugar and spice. Merry Christmas from Santa you precious little one, enjoy this time of year- make sure to have fun!
Love,
Santa Clause
Christmas 2009

Avery's 1st Birthday- Poems

Avery’s 1st Birthday Announcement Poem:

Little Avery Sweet and Small,
She’s Been a Blessing to us All.
Clapping, Crawling, Standing and Such,
She’s Happy, Healthy, and Doing so Much!
Now She’s One, Oh Yes, It’s True,
We Owe it All to God and Help From You!

Here is a little poem I wrote for her Birthday Scrapbook using the letters of her name:

Angel from above
Victoriously overcoming the odds
Ebullient and full of smiles
Renewing the faith of others
You are a miracle!

Avery's Book

This is a book I wrote for Avery before I knew for sure she would live. I was trying to think positively! I thought I could read it to her when she got here, and one day she'd understand just how God takes care of us all. Here it is, minus the pictures!

"The Lily's Prayer"

Once upon a time, there was a yellow lily that lived in a beautiful field. God always took care of this lily. He planted her in good, fertile soil that allowed her to develop into a strong flower. Whenever the lily was thirsty, God gave her rain to quench her thirst. Whenever she began to wilt, God gave her sunlight to renew her strength. The lily was truly happy being in the beautiful field, but she began to long for a little flower of her own to care for. She knew that God always gave her the desires of her heart when she asked for things in prayer, so she prayed hard, hoping it was in God’s plan to fulfill her wish. The lily waited and waited, and even though it seemed like her prayer wasn’t heard, she trusted that God would answer her when the time was right.

One morning, when the lily awoke from a peaceful sleep, she could not believe her eyes. In front of her, lay a tiny seed- God had answered her prayers! She quickly took the seed in her arms and planted it in the rich soil near her. Once she was done, the lily praised God for the blessings he’d bestowed upon her. She began to pray that her little seed would grow healthy and strong. The lily was the happiest she’d ever been, and couldn’t believe her dream had finally come true.

Once again, God cared for both the lily and her seed. He gave them water and sunlight whenever they needed it, and kept them strong and healthy. The lily would fall asleep at night and dream of the day her seed would sprout from the soil the good Lord had blessed them with. Lily woke up one morning, and much to her surprise, a large rock lay over the very soil her little seed was planted in. She tried with all her might to move this rock, but it wouldn’t budge. She knew that with the rock on top of her seed, it wouldn’t receive the water and sunlight it needed to grow. The seed had begun to develop roots, but with the rock over her, she wouldn’t grow any further. The lily became very frightened and worried. Her seed would never be able to sprout from the ground as she had hoped.

The lily was very sad, and started to blame herself for planting her seed in that very spot. If only she’d chosen another place in the soil, her seed would have been fine. She began to cry out to God asking “Why? Why did this rock have to be placed on my seed?” Then the lily began to beg God to move this rock so her seed would have a chance to survive. In the lily’s weakest hour, the Lord spoke to her. The Lord said, “Lily, do you not remember who I am? I am the One who planted you in fertile soil so you may have the nutrients you need to flourish. I am the One who gave you rain when you were thirsty and the sunlight when you were wilting. I am also the One who loves you more than anyone else could love you. I am the One who gave you the desire of your heart with this very seed.” Once the lily heard God’s words, she began to remember all the things He had blessed her with. She felt ashamed that she had not trusted in Him. She remembered that she must trust in the Lord no matter what because He was in control. She knew God loved her and her seed very much. The lily prayed to God asking for His forgiveness, and began to depend on Him to take care of her tiny little seed. God was the only one who could help her.

As the lily looked around, she saw that all the flowers in the beautiful field were praying with her. She knew that God answered the prayers of His children, so she was very grateful to these flowers. Tired from a long day, the lily drifted off to sleep. Once again, when the lily awoke, she couldn’t believe her eyes. It was the rock- it had disappeared! She was so happy, she began to cry out thanking the Lord for what he had done. The lily praised God in the morning and she praised God in the evening. She continued to pray for her small seed, and waited patiently for it to sprout.

A few weeks later, the tiny seed sprouted from the ground. Whenever it needed water, God gave it rain. Whenever it needed strength, God gave it sunlight. The sprout grew and grew, and lily stood amazed as she watched the Lord work. All of the sudden, the small sprout revealed a bud, and was almost ready to bloom. The lily knew that one day soon, what was once a tiny seed in the ground, would bloom into a gorgeous flower for her to love and care for.

After a few days had passed, the time finally arrived. The tiny seed had sprouted and grown and bloomed for all the field to see. The lily had never seen a more awesome sight than the day her seed’s petals began to open. She could finally hold her little flower in her arms! As she held her little one, the lily praised the Lord for all He had done. The lily knew that she had a wonderful story to tell about her great God, and how he saved her special little seed. She began to share her story with everyone who would listen that they may know the awesome power of trusting in the one true God. From then on, the lily depended on God, and she and her precious little flower lived happily ever after.

The End

Avery's Heart

My daughter, Avery Elizabeth Bell, was born on June 9, 2009 via C-Section. Prior to birth, we found out that Avery had Turner's Syndrome (see Turner's Syndrome post for more information) after having an amniocentesis due to significant medical findings. The "medical findings" I mentioned above was a large cystic hygroma that was covering her entire neck and back in utero. The hygroma was supposed to continue growing, taking the blood supply from her body, but instead, began to miraculously shrink. I feel this was as a result of fervent prayers from all across the country. She did have around a 1% chance to survive when we first found out, so doctors began to care for me as high-risk, and I waited to see if there would be a heartbeat at every 2 week appointment. When things began to turn around for the better, I was sent to a cardiologist for fetal echocardiograms twice to search for heart defects associated with Turner's Syndrome. The cardiologist was unable to tell whether or not our baby would have the common defects, so at delivery, we did a C-Section birth to ensure all needed medical staff would be available.
I say I was lucky because lots of times heart defects and others issues associated with Turner's Syndrome are unknown until after birth when things go wrong quickly. Thankfully, we scheduled Avery's birth at a point when Dr. Richard Jonas of Washington D.C., would be in town at University Medical Center just in case she was born with any CHDs. Avery was born around 7:30 in the morning, and I was so relieved to hear that new baby scream. I think it is a surreal moment for every parent, but even more so for me because I wasn't sure if she'd live for the longest time. Doctors whisked Avery away, and the tests revealed she did have an aortic coarctation, so she was transported to UMC's NICU to be put on Prostaglandin (forgive me for medical term. spelling) to keep her ductus open until surgery. The medication (which I was unaware of until sometime later) caused her to have apnea (which is a side effect) several times, and Avery began to code. How my husband must have felt, seeing her stop breathing with people rushing to her aid, as his wife was at another hospital. Avery began to do better on the meds, and besides being somewhat jaundice, she was doing ok. She went in for surgery the day she turned 1 week old at 4 lbs and 15 ozs. The risk wasn't near as bad as I thought it would be since she also had some kidney issues- around 90%. Dr. Jonas performed an extended end to end procedure through closed heart surgery which went very well. Avery also had a bicuspid aortic valve, which ended up being more monocuspid once her next surgeon got into surgery.


She was monitored monthly by our local cardiologist, and had two catheterizations a few months after her first surgery. The first cath was to balloon her valve and the coarc which was repaired in surgery. The second cath was to take accurate measurements. Avery's echos were reading very poorly, and she was doing too well clinically to have those awful numbers. We knew she has a significant leak in her valve, but she had no trouble breathing and seemed to be doing fine with good circulation. After our doctor took the accurate measurements, he told us we could then hold off on her next surgery for a while. Unfortunately, we were unable to hold off as long as we thought. Avery went in for her next check-up and we were told she needed surgery at that point. She would only get worse, and the chances of waiting were too risky. We were then sent to New York City, Morgan Stanley Children's Hospital, so Dr. Emile Bacha (see information about him and Dr. Jonas on this blog) could perform an open-heart valve replacement surgery with the Ross Procedure. This surgery was also very successful. Avery now has a cadavor valve where her pulmonary valve was, and the pulmonary valve is now her aortic valve. She does have some leakage that is (for now) insignificant, but she shouldn't have to have another surgery for some time now. She may have to enter the cath lab for further balloons, etc., but nothing too serious in the very near future...hopefully. Since her last surgery, her cardiologist couldn't be happier with her heart, and says it is functioning beautifully. We were given a 3 month break from appointments, and go back to see him for an echo next week.
Avery has been gaining weight, and hasn't missed a milestone even with all of her complications. She is small in stature, and probably looks about 9 months rather than 13 months. The first thing people say when they see her is..."How old is she?" and "Gosh, she is so small!" She should be walking soon, and is an extremely active little red-head. She is tough, and she has the scars to prove it!!