God Made Everything Beautiful In Itself And In Its Time.
Ecc. 3:11
"She's a tiny dancer, she's a miracle girl, she's got a smile just like sunshine, that lights up the world."
Saturday, May 29, 2010
Friday, May 28, 2010
Hope 4 Tiny Hearts (change.org)
www.hope4tinyhearts.com
www.change.org/chloe_duyck_memorial_fund/projects/fundraising/avery_elizabeth_bell
I happened to check out MS Mended Little Hearts (Mended Little Hearts provides hope and support to children, families and caregivers impacted by congenital heart defects in order to extend and improve quality of life) on Facebook the other day, and saw where you can begin a donation page to fund research for CHD's like those Avery was born with. Of course, this research is of extreme importance in the life of my family. I decided to being a page to raise money for this cause. The links are above, and I have also listed more information below. Physicians like Avery's surgeon, Dr. Bacha, rely on grants to conduct their research. It's amazing what physicians are able to do, and I can only imagine what they will be able to do in in the upcoming years! Along with raising money, we hope to get Avery's name added to Kenny Wallace's #28 "Hope 4 Tiny Hearts" car (which will be adorned with hearts, butterflies and names of children with CHD's) which will race on August 20 at the Bristol Motor Speedway! I just think that would be very cool (even though I know nothing about Nascar- I'd be a big fan that day, lol). Any way, feel free to just check out the page and even donate if you'd like!
The Chloe Duyck Memorial Fund
Our mission is to raise funding for research initiatives in the area of pediatric congenital heart defects. Though heart defects are the most common and most fatal of all birth defects, they are grossly underfunded. Our fundraising efforts support research while creating awareness for these often fatal defects. We're raising big hope for tiny hearts, won't you join us?
Location:
7777 Forest Lane, C-742
Dallas, TX 75230
Note:
This is a program of CARDIO PULMONARY RESEARCH SCIENCE AND TECHNOLOGY INSTITUTE
Basic Info
Founded: 2005
Tuesday, May 25, 2010
Thinking
I often wonder, after what we've been through in the past year, why Avery is here with me. I feel like the normal reaction would be, Why does Avery have Turner's Syndrome and health issues, when so many other kids are born perfectly healthy?. The thing is, I don't- actually, I wonder, Why does Avery get better and thrive when so many other children are suffering and getting worse? May be it's from being in hospitals with sick children surrounding us, or hearing of precious children who die or just don't get better after a horrible diagnosis. I'm not sure, but I do think about it, and I think about it a lot. Sure, I'd love to think that we are just special, and that God is blessing us because he loves us so much. In part, that may be true, but the real truth of the matter is that God loves us all the same, and many of the children who are not getting better belong to very faithful and loving Christian families who are praying and giving their all to God. I've even wondered if it's who is praying and what they are praying for- are we asking for the right things- does God approve of the manner of our requests? But really, that can't be it. I do honestly believe that there is some purpose for all of this, and that Avery is some intricate detail in the huge plan God has for this world. I feel so indescribably blessed and loved every time I look at her. She is the one thing I do not take for granted. I guess it's easy for me to "figure out" my story in my brain, but when compared to other stories in this world, my theory doesn't always check out! I still feel saddened when things don't work out for others the way they have been working out for us. I almost feel guilty for having a child that is being healed by God's hand, when there are others who aren't so lucky. God does provide a mysterious comfort to those who seek him, and I have felt that comfort. It must be extremely magnified for those who are suffering far worse than I've had to suffer. I think there is an intricate plan for all of us whether we live a long time, a brief time, or only in our mother's womb. I know these children that don't make, that suffer, have an incredible impact on people in this world. It's all just something we can't understand...another reason why God is God- his knowledge surpasses our understanding. We can think we know, but we don't really- we're just human. That's why I know Heaven is going to be such an swesome place- God created it. There is no hurt or pain there- only perfect happiness. That is almost unimaginable to me being on this earth. That thought though, is what got me through hearing my Avery wasn't going to live. The thought of her being somewhere wrapped in God's love and protection- that makes the unbearable, bearable. She wouldn't have known a tear or feeling of sadness or disappointment or pain- wow! May be that is what keeps those who are losing the battle on this earth going...just thinking.
Saturday, May 15, 2010
Best Practices to Nurture your Child's Faith
I was reading one of those ParentLife Magazines (from Lifeway I think), and ran across an article about nurturing the faith of your children. I found it intriguing because, as a new parent, I often wonder if I will do the right things to show Avery who God really is and how much he really loves her. I know that as parents, her spiritual foundation is our responsibility. All of her education on God and religion comes from us and what we expose her to until she reaches the age where she may seek things on her own and make her own decisions. I want her to have a strong foundation, and to be able to see God in everyday things...to be able to connect with him on a deeper spiritual level as she matures...to know him and love him for all that he's done for her, and to cling to him for the rest of her life. That sounds like such a big and scary job! Thankfully, I know God is there to lead us along the way!
Ultimately, it's not so much what I say to her, it's what I do with her and with my own life to show her. After all, just like in the picture above- she's in our hands.
I thought these were good tips to go by, so I listed them here in a nutshell.
1. Help her to see her gifts and provide her with good education that she may use those gifts to serve and love others- make a difference in the world.
2. Expose her to the arts, and help her appreciate them.
3. Teach her that taking care of herself and her body are ways of honoring God.
4. Teach her about marriage using the Bible.
5. Listen to her as she grows and let her challenge your faith.
6. Remember that parental authority has limits, God'd doesn't. Our final loyalty is to God alone.
7. Discuss things in nature that God created.
8. Pray and read/discuss the Bible with her.
9. Explain the Bible as a book of wisdom you will always learn from and never fully
conquer.
10. Dedicate Sunday to church and family.
11. Serve others around you and in your community as a family.
Sick Days :(
I started my week off feeling great. We had a really good "Pep" day at school to get us motivated on MOnday, and then my students truly worked their hearts out (most of them) on their Reading MCT test. Jake was back at home, and Avery had been in a wonderful mood, and THEN- the stomach virus struck!! Really??? This week??? Well, I got over it, sort of, went back to school, and then got the call that Avery had it too! We're still keeping our finger crossed that Jake won't get it, but you know how that stuff works! Thankfully, Avery was home with Grammy that day, so she was taken care of, and she took formula this morning, so she's much better. I was so upset and felt so guilty the moment I knew for sure that she had it. Silly right? I know, but thinking of passing something that made me feel so awful on to my little angel was not a good feeling!
I forget just how irritable I can be when I am sick too- it's funny. I get this really aggrivated feeling, and then I stop and think- what am I really aggrivated about??? Hey, at least I recognize it! You just have less of everything when you don't feel well- less patience, less energy, less food, less good sleep, the list goes on. I don't think about it much, because frankly, I don't get sick that often. It's weird for me to have gotten the stomach virus for the 2nd time in 1 year. Is my immunity down after pregnancy or something??? Oh well, it just helps me realize how blessed I am with health, and I pray that continues for a long, long time!
I forget just how irritable I can be when I am sick too- it's funny. I get this really aggrivated feeling, and then I stop and think- what am I really aggrivated about??? Hey, at least I recognize it! You just have less of everything when you don't feel well- less patience, less energy, less food, less good sleep, the list goes on. I don't think about it much, because frankly, I don't get sick that often. It's weird for me to have gotten the stomach virus for the 2nd time in 1 year. Is my immunity down after pregnancy or something??? Oh well, it just helps me realize how blessed I am with health, and I pray that continues for a long, long time!
Monday, May 10, 2010
My First Mother's Day
I had my first Mother's Day this past Sunday, and I spent it in Vicksburg with my own mom, my dad, and Avery. Jake was out of town with baseball. It was really the night before Mother's Day, that made me think about being a mom the most. Avery was very tired and worn out from our day of running around town, and she fell asleep on the couch cuddled with a koala bear one of mom's salesman had sent for her. She looked so sweet sitting there, I just felt overcome with love. Once she woke up, she was still pretty sleepy and delirious, but she began to do this "thing" she like to do to me. She slobbers all over my face and pulls my hair, like she is kissing me. Ha, I call it the Avery Attack! When I took her to lie down for bed a bit later, she just wrapped her arms around my head and put her face next to mine. That is what Mother's Day is all about! I've never felt more joy in my life. Being a mom is awesome!
Thursday, May 6, 2010
Psalms 138:8
The Lord will fulfill his purpose for me; your love, O LORD, endures forever- do not abandon the works of your hands.
We all have a specific purpose...the question is, are we fulfilling it or not?
Wednesday, May 5, 2010
Letting go of Manny.
I've been really sad this week after letting my dog, Manny, go live in a new home this past weekend. Jake bought Manny for me 2 years ago, and we've spoiled him ever since. Jake thought I needed something to take care of, because I wanted to get pregnant and it just wasn't happening. It was a good idea, and it worked for the most part. I still wanted a baby of course, but I enjoyed having Manny around and taking care of him. I'd never been one to have a dog in the house, or any pet for that matter. I guess I've always been such a clean freak, I was worried about the shedding, etc. I got over that rather quickly with him, even though he shed some kind of awful. He was always happy to see me, and he was very protective of us and our home. Manny is also very special to me because he was with me through my pregnancy. I know that may sound funny, but it was comforting to have him around. Jake was pretty busy with baseball season last year, and it helped having Manny home with me. He had his bad moments where he acted up, but for the majority of the time, he was just a good dog. Things began to change when Avery arrived. He seemed to be ok with her. We put one of her hospital blankets in his house before bringing her home, and let him sniff her and get to know her when she came home. I thought it would all be fine, but once she got a little older, things changed. Manny began marking his territory around the house at first. We handled it, even though it drove us nuts. Then he just began to act out, peeing and pooping on the floor when he'd just been outside. He snuck in our room, and marked the corners of our bed and new comforter. I would've even gotten over that, but he was also tearing up Avery's toys, peeing on her floor blanket, and he got into her room after jumping his gate one day and went to the bathroom on her rug. He always tried to get attention when people were giving Avery attention, and he would snatch her snacks from her hand and run off too. Jake and I just didn't know what to do with him. With all that has been going on with my family and with Avery, I just couldn't deal with the added stress of this situation. Thankfully, another MC coach said his mother loves daschunds and would love to have Manny. She has an older one already, and I knew Manny would love that. We'd actually been considering getting another one for Manny to have a play-mate, but just couldn't do it right now. He said Manny would be treated like a king and get lots of attention. I went back and forth and just couldn't decide what to do, and I cried a lot as always! In the end, I decided to let him go. It's just better for him and better for us in the long run as much as it hurts me to see him go. I felt like such a bad person for doing it, but I know I have to take care of Avery first. we just didn't see those behaviors changing and had heard of that breed doing such things. I am just so grateful for the home he went to, because I know he will still be spoiled and well taken care of as long as he lives. I'm crying as I write this, because Jake is gone, and I miss ole Manny here to "protect" Avery and me. It's hard to get used to.
Avery is getting around!!!
I picked Avery up today from her sitter's house, and she told me how Avery is "getting around." She said that girl is crawling all over and pulling up on everything and everyone! As a matter of fact, she pulled up on one little boy, and pulled down his pants! She does whatever is necessary to get where she wants to go! I find that comical!!What I also find comical is the funny looks people give her in stores. They always comment on how adorable she is, but have a somewhat strange look on their faces when they ask how old she is and I answer! So, I have an 11 month old who looks like a 6 month old but acts like an 11 month old, lol! Jake and I call her our "freak of nature"- in an awesome way if you think that sounds bad! Whatever Avery is "supposed" to be doing, well, she is always doing the opposite- at least when it comes to her health. Let's pray this doesn't follow into her personality when she enters school, or I am in bigger trouble than I once thought! I laugh now thinking about the doctors in New York, wondering how in the world she looked so healthy and was breathing so well. They almost wanted to look around the room to see if we had a second child that needed heart surgery. May be this is another way God gave me peace in knowing she'd be ok? I don't know, but now I think it's pretty cool.
Recall Notice Email
I received this email the other day, and thought it was a good one.
RECALL NOTICE:
The Maker of all human beings (GOD) is recalling all units manufactured, regardless of make or year, due to a serious defect in the primary and central component of the heart.
This is due to a malfunction in the original prototype units code named Adam and Eve, resulting in the reproduction of the same defect in all subsequent units. This defect has been technically termed "Sub-sequential Internal Non-Morality," or more commonly known as S.I.N., as it is primarily expressed.
Some of the symptoms include:
1. Loss of direction
2. Foul vocal emissions
3. Amnesia of origin
4. Lack of peace and joy
5. Selfish or violent behavior
6. Depression or confusion in the mental component
7. Fearfulness
8. Idolatry
9. Rebellion
The Manufacturer, who is neither liable nor at fault for this defect, is providing factory-authorized repair and service free of charge to correct this defect.
The Repair Technician, JESUS, has most generously offered to bear the entire burden of the staggering cost of these repairs. There is no additional fee required.
The number to call for repair in all areas is: P-R-A-Y-E-R.
Once connected, please upload your burden of SIN through the REPENTANCE procedure. Next, download ATONEMENTfrom the Repair Technician, Jesus, into the heart component.
No matter how big or small the SIN defect is, Jesus will replace it with:
1. Love
2. Joy
3. Peace
4. Patience
5. Kindness
6. Goodness
7. Faithfulness
8. Gentleness
9. Self control
Please see the operating manual, the B.I.B.L.E (Basic Instructions Before Leaving Earth) for further details on the use of these fixes.
WARNING: Continuing to operate the human being unit without correction voids any manufacturer warranties, exposing the unit to dangers and problems too numerous to list and will result in the human unit being permanently impounded. For free emergency service, call on Jesus
DANGER: The human being units not responding to this recall action will have to be scrapped in the furnace. The SIN defect will not be permitted to enter Heaven so as to prevent contamination of that facility. Thank you for your attention!
- GOD
P.S. Please assist where possible by notifying others of this important recall notice, and you may contact the Father any time by 'Knee mail'!
RECALL NOTICE:
The Maker of all human beings (GOD) is recalling all units manufactured, regardless of make or year, due to a serious defect in the primary and central component of the heart.
This is due to a malfunction in the original prototype units code named Adam and Eve, resulting in the reproduction of the same defect in all subsequent units. This defect has been technically termed "Sub-sequential Internal Non-Morality," or more commonly known as S.I.N., as it is primarily expressed.
Some of the symptoms include:
1. Loss of direction
2. Foul vocal emissions
3. Amnesia of origin
4. Lack of peace and joy
5. Selfish or violent behavior
6. Depression or confusion in the mental component
7. Fearfulness
8. Idolatry
9. Rebellion
The Manufacturer, who is neither liable nor at fault for this defect, is providing factory-authorized repair and service free of charge to correct this defect.
The Repair Technician, JESUS, has most generously offered to bear the entire burden of the staggering cost of these repairs. There is no additional fee required.
The number to call for repair in all areas is: P-R-A-Y-E-R.
Once connected, please upload your burden of SIN through the REPENTANCE procedure. Next, download ATONEMENTfrom the Repair Technician, Jesus, into the heart component.
No matter how big or small the SIN defect is, Jesus will replace it with:
1. Love
2. Joy
3. Peace
4. Patience
5. Kindness
6. Goodness
7. Faithfulness
8. Gentleness
9. Self control
Please see the operating manual, the B.I.B.L.E (Basic Instructions Before Leaving Earth) for further details on the use of these fixes.
WARNING: Continuing to operate the human being unit without correction voids any manufacturer warranties, exposing the unit to dangers and problems too numerous to list and will result in the human unit being permanently impounded. For free emergency service, call on Jesus
DANGER: The human being units not responding to this recall action will have to be scrapped in the furnace. The SIN defect will not be permitted to enter Heaven so as to prevent contamination of that facility. Thank you for your attention!
- GOD
P.S. Please assist where possible by notifying others of this important recall notice, and you may contact the Father any time by 'Knee mail'!
Tuesday, May 4, 2010
I have a BLOG???
After much debate, and one crazy year and a half, I finally decided to start a blog! During my pregnancy carrying Avery, I made a promise to God that I would tell everyone about the work he has done in both me and my sweet baby girl. I’ve done my best to keep people posted and spread the word, but there are so many things and circumstances that have been left untold. I figured what better place to share, than on my own blog. That way, if someone wants to read it they can, and if they don’t it’s okay! On Facebook, it’s a bit different. Any way, I hope to may be share some hope with those that need it, and encourage others to praise the same awesome God that has made my life have meaning. So, here goes….!
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
"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
Sharing my journal...
Most everyone that knows me, knows what has gone on since I became pregnant with my daughter Avery. Here is the journal I began typing from the beginning of her circumstances until now. It may give some insight to those who don’t know me well. I will warn that it is rather long, so I will try to post it in sections!! Hope you enjoy reading it!
I can remember the moment I found out I was pregnant so clearly. I was so in shock, and thought, “IS this really happening? Is God answering me?” Once it settled in, I would just catch myself smiling for no reason, thinking of the day she would be here, and I could hold her and kiss her little face. I was beginning a new journey, and I had no idea what was in store for us. Even more vividly, I remember the day we found out the news. We were waiting in the waiting room with my mom and dad, talking to another girl who was pregnant with her 2nd child. She would go before me into the sonogram room. I remember when she came out, she said “it’s another girl.” She was a little disappointed because she was hoping for a boy this time. My only real fear going into that room was that the baby wouldn’t be positioned correctly, and they wouldn’t be able to determine the sex. After all, I had taken off work the entire day, and was excited to do some pink or blue shopping. Looking back on the moments as I watched her, while lying on the table, I can see now that something wasn’t right, and we just didn’t notice at the time.
Jake was videotaping, and I was in awe of my precious little one moving around in my belly as she sucked her thumb. What could be wrong with that? When the doctor came in unexpectedly, I still didn’t let myself think anything could be wrong, until she sat down to tell us she had some concerns. I suddenly felt like the earth had moved from under my feet, and I was falling into a bottomless pit. Cystic Hygroma? May not survive? Specialist? I just saw her moving around fancy free! The worst part of all, was that mom and dad had to see us get the news. Mom was having lots of issues with work, and dad had recently lost his mother to Alzheimer’s. Poor Jake, how would this affect him? The look on his face, not knowing what to do or say, just makes my stomach turn thinking about it. I immediately tried to blame myself, thinking I was being punished for some mistake I’d made in my life. I’d made so many after all. Once the tears came they wouldn’t stop, and I just couldn’t get it all to sink in. We came home, and Jake took the day off. He held me, and we prayed together. I told God that I knew all things were possible through him, and asked him to please save my little one. I realized that Jesus wouldn’t have died on the cross and taken punishment for my sins, if I was going to be punished by God any way. It was pretty ludicrous for me to think that once I came back to reality.
The doctor warned me not to look on the Internet, and I wish I would’ve listened. All I could read was it would end in death, and how most terminate pregnancy shortly after finding out. I went through so many feelings: fear, sadness, worry, numbness, anger…nothing anyone said to me made me feel any better. On the way to my appointment with the specialist the next day, I heard By Your Side by Tenth Avenue North on the radio. I knew it was no accident that I heard that particular song in that particular moment. God was telling me He loved me, and that I had to give this to Him. I felt a bit stronger walking into the office. I then got some hope from the doctor , and had my amnio done. He said that the unexplainable happens, and that sometimes these things just went away. Knowing that the growth was a large one, and that there was little to hold on to, I still hoped things would be ok. I held on to that hope, and used the time to draw closer to God. I even wrote her a little story to read when she got here about how God healed her when she was in mommy’s tummy. The waiting was the worst part. From one appointment to the next all I could do is wonder If we’d hear a heartbeat, or not. Work helped me to keep busy, but the tears always came when I got to my car at the end of the day. As time went on, I would get better, but then the appointment day would arrive along with the sadness and anxiety.
We went to see my OB to listen for the heartbeat, and get our amnio results on a Tuesday. I was relieved to hear it beating at the normal rate. I couldn’t be relieved for long though because the news from the amnio was disheartening. We were told that our little girl had Turner’s Syndrome, and that with the size of the hygroma along with the other defects, she would most likely develop Infant Hydrops and die by the time I was 24 weeks. It was definitely tough news to swallow. Is God giving me this information that I may begin coping with her death, or is He telling me to expect the impossible and have more faith in Him? I knew that God was capable of far more than I had seen before, but was unsure of His plans. I tried to be strong, but it hurt. I was saddened every time I’d see a pregnant woman or small child. It seems like every show I watched on T.V. was about a sick child or a person having a baby. It made it even worse to think about kids I knew who had parents who didn’t care for them, or to think of people who got pregnant when they didn’t even want the child they were carrying. I admit, I felt sorry for myself some. I also questioned why God would answer my fervent prayers for a child, and then the child would be taken from me in this way. I started to think about all the people out there that were praying for us, and I was so grateful for it, but I just didn’t know what to do or how to feel. The more I thought though, I realized a few things. First of all, more people than I even knew about were praying for us, and prayer is a powerful thing. God loved me, and he hurts for me just like my earthly dad does. He had my best interest in mind, and knew more than I could ever imagine. I decided then, that there is a reason for this to happen, and I might never know the answer to why?. I also read this book the preacher had given Jake about losing a child. It put so many things in perspective. I was comforted by knowing my baby would have instant Heaven when she died. She’d never have to feel sadness or commit a sin. God could have been saving her from a life of pain and discomfort. Most importantly, I read that when I got to Heaven, she’d know me. I’d always known I wanted to go to Heaven, but it made me actually long for it, the way the songs I sang in church always said. What better place for her to be if she can’t be with me? She’d be safe in the arms of God, the only one who loved her more than Jake and I did.
We went in again to see the specialist not really knowing what to expect (as usual). To our surprise, they told us her Hygroma had gotten significantly smaller. Not only had it gotten smaller, but she was the exact size she should be for the length of the pregnancy, her heart looked good, and even her brain had the correct measurements. One of her kidneys wasn’t functioning, but the other was doing a great job, so it wasn’t a concern. I could tell the doctor and technician were surprised themselves. Immediately, I just thanked God for what he was doing with my little girl. It took a little bit to believe what they were telling me, and I continued to feel like I was on some sort of weird roller coaster ride. I could tell Jake felt like a load had been lifted. I began to feel that way too, and we decided to take things one appointment at a time, and to be cautiously optimistic. After all, our doctor sure seemed to feel that way. I set up an appointment with the Cardiologist to make sure her heart was doing well, and began to have the mindset that Avery would be here in June. As I waited on the Cardiologist appointment, I began to think back about things. Prayers I’d prayed, and things I’d asked for. I remember that on several occasions, I’d asked God to draw me closer to Him, and for Him to show me how to listen to Him. I was always so unsure about what God wanted from me. I wanted to be able to know when He was telling me to do something, rather than me telling myself to do something. I had a feeling a while back that God had more in store for my life, than what I was doing at that moment. I just wanted to make sure I knew when the time came, that it was time for me to do what God instructed. When I thought about all of those things, I thought, “may be this is it, may be He is drawing me closer to Him through this child.” I began to depend on Him, because I was so hopeless depending on myself. I thought I had given things to Him before, but I would always keep a small hold, thinking I could do some things on my own. I knew, that I could do nothing on my own, that I have to rely on God for everything. He’s the One in control, not me, or Jake, or the doctors, or the Hygroma and Turner’s. I began to see what it really feels like to let Him have all my worries like He had always said to in the Bible. He took my yoke, and gave me rest. I waited for what seemed like forever to see the Cardiologist.
Mom and dad came to Brookhaven with me, because Jake was in Texas with baseball. The doctor was very humorous, but I could tell he knew what he was doing. Avery seemed to be difficult with her positions, as usual, but he finally saw all he needed to see. Things looked good, and her heart was normal so far. I’d have to continue to see him throughout my pregnancy to ensure nothing developed, but what else could I ask for at this moment? She was growing and healing! I set my mind on getting things ready for her, and began buying clothes and thinking about the nursery. People began to tell me I had a glow, and I was feeling good. I was trusting God to heal her, and hoped my testimony would be one to show others how great our God is, and just what He can do in a life that trusts Him. As my next sonogram appointment neared, I was anxious to see what was happening with Avery. I went in, and the hygroma was almost completely GONE….so much so that they wouldn’t have even told me about it if it were my first sonogram. Not only was the hygroma better, but even her right kidney looked better. They couldn’t even tell there was a kidney before, but now the cortex was visible! Dr. Tucker said he’d seen much worse kidneys be perfectly normal by delivery. She was a little over one pound, and hadn’t skipped a beat with all that was going on! My little one was 1%, yes, 1% of babies with her condition who was likely to survive. Could I really begin to start enjoying this pregnancy without out all the mental stress???
That is exactly what I began to do. I began to feel normal again, and was excited about the arrival of this amazing little girl God so graciously was healing. In the back of my mind I wondered about the Turner’s, and how it would affect her, but I learned to put those worries to rest for the most part. God had done so much already, and the last thing I wanted to do was worry when He was telling me not to. I did print out information, and saved websites to check into later. I knew the basics, and the rest was up in the air. All of these children are different, and I’d just have to wait and see the characteristics Avery would have. I began going to see Dr. Kimmel every two weeks, because Dr. Tucker said that I could wait and come to him in eight because of her good progress. He told me to see Dr. Braden one more time, and that I shouldn’t have to see him again until her birth. This was great news! The only bad thing is I wouldn’t know about the progress of her kidney until mid-May. I would get to see her when I visited Dr. Braden though, so that was comforting. Jake painted the nursery and put her bed together, and I began to decorate. I hung her little clothes in her closet, and bought a few toys to place in her room. I couldn’t wait for my baby showers which were quickly approaching! Time was definitely ticking down!!!
I then find myself at 35 weeks, and realize it’s time to slow down a little bit. My school and Monroe showers went great, and it was neat bringing all of those gifts home. Jake set up Avery’s swing in the living room, so Manny could get used to it, and all of the sudden, there was something for baby in every room! I had one more shower left in Vicksburg, and couldn’t wait to see all the people who had really been praying for me and supporting us through everything. I went back for my last fetal echo with Dr. Braden, and nothing new had developed. He said he wouldn’t be surprised if she did have the narrowing or if she didn’t have it. He did fill us in that if she did, it shouldn’t affect her delivery, and they would give her medication to keep her well until they could do the procedure. The catch is we would probably have to go to Little Rock or Birmingham to have it done. I was focusing on her not having the problem at all. I did have a small breakdown after coming home from Brookhaven, but Jake helped me through it. I just knew she was doing really well inside of me, and it was a little scary to think of what might happen to her when she got to come out. On to the next appointment!
Dr. Kimmel decided she’d induce labor around the 15th of June rather than wait, so a full staff would be there. That way I’d be around 38 weeks, and her lungs would be ready. I became more excited to think Avery would be here, and I could hold her in just a few weeks! I could tell things were starting to wear on Jake though. The MC job turned out to be a less than smooth situation, and all of the sudden, we were faced with the possibility of no job again. It made me wonder just how much we were capable of taking, but it caused me to pray even more. So I go in for my last appointment with Dr. Tucker, and Avery was still below the appropriate percentile for growth. Her right kidney had also developed several cysts on it…one large on the upper portion and a few smaller on the lower portion. I wasn’t quite sure what to make of the kidneys, but the doctors didn’t seem worried, and her function was still there. They said she may have a small fatty patch on the back of her neck from the hygroma, but that there was nothing to worry about. I had, however, been worrying about inducing labor. Others around me seemed skeptical, and I worried it would put more stress on Avery’s little body and heart. I expressed some concern to Dr. Tucker, and he seemed to agree. He spoke with Dr. Kimmel, and at my next appointment, she decided to do a C-section one week later on June 9! I went from thinking she would be here at the end of June to mid-June to….she’d be here in one week! I became both excited and anxious, and kept busy with all the little things I wanted to get done before her arrival. I spoke with my distant cousin, Jason, who was doing his surgical residency at Oschner’s in New Orleans for Pediatric Cardiology. He explained a few more things about the situation with her heart, and told me what could and couldn’t happen. I became a little more worrisome about that situation, because I feared she’d have to be transported to UMC, and just didn’t know what to expect. I went on to my last shower in Vicksburg, and was happy to see Nicole, Suzanne, and several other friends and family members. Mrs. Turner made the cutest little dress that said “ I am a miracle,” and I thought about how very true that would be for Avery.
I don’t think I ever mentioned that a lady I knew who had been praying for me. She even asked if she could come to my house to pray over me for the healing of Avery. She stopped me one morning, and gave her testimony of God’s healing in her own life, and told me all the ways He was leading her to pray for me- so many things were much more than coincidence. I was honored that she felt that way, yet still a bit nervous about the whole situation. I had never experienced something like that before, and it was different for me. She wanted to come when Jake would be home, but it never would work out. He mentioned that we should never get in the way of what God is leading a person to do, so I began to feel more at ease with the whole thing. Deborah came over the Thursday before Avery was born after I had been to the hospital for my pre-admittance appointment. She began to tell me more of her story. She discussed speaking in tongues, which, I admit, had always freaked me out. Still, I listened, and decided to enter with an open heart. God has never given something like that to me, but it didn’t mean He wouldn’t give someone else that spiritual gift. I believe He chooses people for things, and He is never to be underestimated. If it happened in the bible, it can happen now. It was all new to her, so I didn’t feel totally awkward as things proceeded. After her explanation, in which she told me of all the languages God had bestowed upon her that she had never studied before, we read scripture and sang “ I Need Thee Every Hour” (which was my choice) and “I Must Tell Jesus.” After that, She lead me in giving praise to God for what He’d given us, which I participated in through prayer. She then began to pray over me, mostly in English, but some in Chinese, French, and even sign language. She laid hands on my belly, and asked for complete healing over Avery….heart, kidneys, chromosomes….everything. I began to feel at peace. It was all very new and very weird to me, but I never felt threatened or afraid. I had faith already that God could heal her, and I believed in miracles, I just didn’t quite know exactly what God would do with this situation…what was His will for Avery? He had already healed so much in allowing her to survive, would He continue the process, and make her completely whole? One thing that made me feel more comforted by what was going on is that Deborah was very humble. She didn’t take credit for anything that was going on- all praise went to God. She mentioned she was just a normal person, and that she was just trying to answer God’s will in her life. She didn’t go around telling everyone what God had done for her, she shared only with those whom He lead her to. She said she couldn’t pray for everyone, but that God put certain people on her heart, and those were the ones she focused on. She also mentioned that she would eventually be going to mission work in the countries where her languages would be of use. She said that she knew Avery would be healed, and that it might take time, but she would be completely healed. She said it would be a healing to glorify God- that others may know how great He is. It’s funny, but I had actually prayed that when we didn’t think Avery was going to make it. I had prayed that she would be healed, that others strength and faith in Christ would be magnified, and that her testimony would lead others to Christ. It’s so hard battling between the supernatural and the natural in this world. My sense of reason seems to overshadow who God is at times. I know it is mainly the devil trying to weaken my faith, and partly just my human nature.
There were only 4 more days until Avery’s delivery, so I couldn’t wait to see what God was going to present me with….what story would I have to tell?
The day of delivery we arrived at Woman’s Hospital at 5:30 a.m. They put me in a room, and began prepping me for surgery. I remember telling Jake that there was now nothing he didn’t know about me because he was in the room the entire time (except when they asked about spousal abuse). I didn’t really get nervous until I went into the operating/delivery room. I wasn’t just nervous either, I was plain scared! It was white and cold and there were these huge lights hanging over me. I remember the anesthesiologist poking me with a needle asking me if I could feel it, and I was so afraid of giving the wrong answer and feeling the doctors cut into me! Jake was there, holding my hand, but he looked more scared than I was! I remember them saying here she comes, and I heard that cry- which made me cry. Then, I saw her, and it was the more surreal moment I’d ever experienced. I was so relieved, and just thought that everything was fine. I was pretty jealous because Jake got to hold her, and was able to take everyone back to the nursery to see Avery. I had to wait in my room and ‘recover.’ Other than that, things were going great until the phone rang. The doctors discovered she did have the coarctation, and told us Avery was being transported to UMC as soon as possible. Not only had I only seen her for a brief moment while under anesthesia, now they were taking my baby away, and I was stuck in a different hospital. I did get to see her before she left in the nursery, and was able to hold her for the first time in the nursery. The transport woman brought Avery by my room in an incubator so I could say good bye and sign the needed paperwork. It was all so devastating. Jake and Faye went to stay with her in NICU. . After a near mental breakdown, I prayed with all my heart to be moved to UMC (which didn’t look like it was going to happen), and shortly after I was told to pack my things. That was probably the quickest answer to a prayer I’d ever had!
Once I was at UMC, I was able to visit Avery in NICU whenever I chose, and we also had a place to sleep because I had a room. It was difficult seeing this tiny baby attached to cords and monitors, but she did look peaceful and rested most of the time. The nurses were very kind and caring, and they would let me hold her at night sometimes. NICU was a little overwhelming with upwards of 90 infants. Avery was in the front though, so we didn’t have to see much of what went on with the others. There was Avery’s pod-mate, Lenaro. He was born at 21 weeks, and living in an incubator on a respirator. In the one week we were there (which included a weekend), Lenaro had no visitors. The only touch he got was from the doctors and nurses when they checked him. It was so disheartening to me to see a newborn baby with no one around to care for him. It made me shower Avery with even more kisses and touches than before. We spent a lot of time with her there, and put our parents on shifts so she wouldn’t be alone. It was very obvious how strong she was- she was a fighter. We waited and waited to find out about the heart surgery, and were told she might be airlifted to Washington D.C. I looked up the surgeon, and found he was world-renowned with accomplishments a mile long. It was very significant how things were timed.
Dr. Jonas, the surgeon, only comes to UMC once a month for a few days. It just so happened that he was flying in only a few days after Avery’s birth. They scheduled her surgery to take place on a Tuesday- Avery was one week old. The assisting surgeon came to explain the details of the surgery, and had us sign the consent. We knew the basics of the procedure before Avery was even born because Dr. Braden had explained it all to us. The extreme details were the things we could have gone without knowing. The thought of such a tiny baby having heart surgery is much more frightening when it’s a reality. We were also able to meet with Dr. Jonas, and I felt certain that he was the right man for the job. He told us she had a 90-95 % survival due to the circumstances. That sounds awfully good, but as a mother, you worry about the other 5-10%. Once I prayed and thought more about it, I realized that it didn’t matter what the statistics were, Avery had only a 1% chance to even survive the pregnancy. After beating out the 1%, 90-95% would be a breeze. I felt like God put everything in place with the surgery to let me know she was going to be ok. I did have those moments of weakness and extreme fear, but He helped me through it. When the day came for her surgery, they put Avery in the incubator and said I could talk to her and give her a kiss. When I looked down at her, she opened her eyes and looked at me…then she smiled. We had been trying to get her to open her eyes the entire time she was in NICU, and she finally did it. I think that was just another way God spoke to me to tell me He was in control. When Dr. Jonas walked in the waiting room, I felt relieved- he was smiling. He said the surgery went well, and said she was doing great. Even though I was relieved, it didn’t last long.
Once we got to the PICU, it was even more difficult. My precious baby had something attached to every part of her little body. She was very swollen from the respirator, and I was scared to touch her that I may mess something up. To make matters worse, the PICU is open to other beds. There were 2 other older children who had just come out of heart surgery as well. All we could do was sit and look at Avery, and strain as we listened to the cries of pain from the others around us. It was mentally and physically exhausting. We ‘rested’ in the waiting room with many other people, and sat next to her bed the rest of the time. All I could focus on was getting all those attachments off of my poor baby. They gave her meds for pain to keep her from hurting and from being fully awake. Once she came off of the anesthesia, I could tell she was totally uncomfortable. All we could do was rub her little head and hold her little hands to comfort her. Dr. Jonas had told us a few things that would probably happen to her, and he was right on. I would have been a lot more afraid if he hadn’t filled us in. After several days (which seemed like a lifetime) the respirator and cords came off one by one. I was so glad when they finally moved us into the transition room because she was doing so well. The transition room allowed us to have more privacy, and we didn’t have to see all of the other sick children any more. The down side is we were still getting no rest due to feedings, nurses, beeping monitors, and the one cot we had to share. I stayed hiding away in that little room with her, and tried to forget where we actually were for a bit. Avery began to look more and more like a normal newborn. I held her a lot trying to make up for lost time, and enjoyed every minute of it. We focused on getting her to gain weight so we could get her home. When the doctors decided she was ready, they told us we could take her home as long as she maintained her weight. She did, and we were able to leave the hospital on a Thursday.
Avery was 2 ½ weeks old. I was so scared the day we left because I felt like I was getting the flu. I had the chills and ached all over. I wouldn’t tell the nurses because I was scared they wouldn’t let us leave. I guess I was just hitting rock bottom. Once we got home, I passed out in the recliner holding Avery, and we slept for hours. I was just exhausted and coming down from my adrenaline rush.
Besides the monthly cardiology appointments, everything just began to seem normal. Avery was growing and hitting milestones. I enjoyed watching her change and develop so much- she was just such a sweet baby girl. Dressing her, of course, was also a lot of fun! I went back to work in August, rather than taking extra time off. I feared I would need my sick days if Avery had to have any procedures done. The first week of school, however, I had to take off so Avery could go in for a heart catheterization. Dr. Ebeid inserted two balloons in her heart- one in the same coarctation area, and the other in her aortic valve. This was the first instance we’d had with her valve. We knew from birth that it was a bicuspid valve, rather than a tricuspid valve, which is a normal Turner’s Syndrome attribute. We hadn’t had any problems with it before though. Now, there was narrowing and a significant leak there. It was worrisome, but Avery was in good hands with her doctors, and she still looked perfectly fine. It was so hard to believe when they’d tell us something wasn’t right with Avery, because she never shows the symptoms of what she is going through with her heart.
The catheterization went well, and we went about our lives for a while longer. A couple months later, Avery’s cardiology appointment showed a bad echocardiogram. Dr. Ebeid began discussing surgery on her valve at this point, and said he was worried to wait much longer. He waited another month, and decided to just go in the cath lab to take some exact measurements before making any more decisions. He had mentioned speaking with a surgeon in Boston, but said we’d talk after the cath. When he went in, he saw that the echo readings were off because of a second narrowed area. This cleared up the confusion he was having about her test results, and he felt much more comfortable with her situation. He told us we could definitely wait on surgery for now. When he had discussed the surgery with Dr. Jonas, Dr. Jonas had disagreed with Dr. Ebeid and didn’t want to do the surgery because of the high risk any way. So, once again, we went on with life, and things seemed fine.
The next month, Jake was unable to go to the cardiology appointment, so I took Avery alone, thinking nothing had changed. The echo showed that Avery’s heart function was bad and the doctor said it would only get worse. He told me that the surgery needed to happen soon. He told me about Dr. Bacha, who was previously in Boston but had recently moved to New York. I told him to move ahead and contact Dr. Bacha, and we’d make a decision based on what he said. Upon researching Dr. Bacha, I saw that valve replacement was his specialty. I also saw him interviewed and he seemed to be such a kind and caring man- not cold and distant like some surgeons can seem. He also had children of his own, and had been researching to find less invasive ways to heal children. I felt really good about what I saw, but was nervous about taking Avery all the way to New York for surgery! It all happened very quickly. We were contacted by Dr. Bacha, and next thing I knew, we were booking a flight and a hotel in Jersey. You would think the situation would be ridiculously stressful, but it actually went pretty smoothly. God was in control, and he made things happen. I was so busy getting everything in order, I didn’t have time to worry any way. I was, however, a little concerned about how we’d pay for everything, and what I would do about my job. I only had a few sick days left due to my pregnancy appointments and Avery’s appointments.
Amazingly enough, people (lots we didn’t even know) began to just give. We were given large sums of money, someone scheduled our flights with flyer miles, my co-workers donated sick days (58 to be exact)- EVERYTHING was taken care of, and I was able to just take care of Avery. I have never been more thankful or more humbled in my entire life. I felt so loved and touched by everyone’s generosity, concern, and prayers. I began to wonder why God was so good to me, and I realized even more that his plan for Avery was much bigger than I could ever imagine. The prayers for her came from all over- even in other countries. So many people followed us in New York through Facebook- it was crazy. We got through the surgery, which lasted about six hours. We were beginning to sit on the edge of our seats because we had originally been told it would be 3-4 hours. There were also no updates during this time, so that was hard. Once I saw Dr. Bacha walking in the waiting room nonchalantly with a Diet Coke and a smile, I had a feeling of relief rush over me and cried for the first time. I also praised God for sending us when he did. Dr. Bacha said he was very relieved we came when we did because Avery’s heart was doing worse than they even knew it was from what he saw once he opened her up. It’s just another way God lets me know that his timing is perfect- he is perfect. It’s so hard to even remember every little thing that God did because there were so many things throughout this process. I was worried about Avery getting sick and I was worried about the flight- I prayed and Avery remained well and was excellent throughout the flight. I prayed for a quick recovery, and we were able to return home 2 weeks earlier than we originally were told. I prayed when we were told Avery would have to return to PICU once we were on the floor due to a large amount of air in her lungs. Dr. Bacha suddenly appeared and stopped the other doctors from sending her back. People prayed that night, and the air in her lungs was gone the next day. She did so well the next day, as a matter of fact, that we discussed being discharged. We got to leave the day after that! We remained in New York for several days until the post-op appointment. Avery was still scared and shaken, but doing well otherwise. She was completely checked out at the post-op, and everything looked wonderful. We flew home the following day.
We went to see our local pediatrician, and she told me I just had no idea how good Avery looks for a heart baby coming back from surgery. I also overheard her in the hall speaking to another doctor about how amazing Avery is, and that she looks like nothing had even happened to her! I felt very special hearing her say that. There may be more surgeries in our future, but God is helping us take things one day at a time. People say they don’t know how I deal with it so well, and some seem to feel sorry for us. I, on the other hand, know that things are very different when you’re actually in this situation. You learn how to truly trust because it’s all you can do. There’s nothing I can do here- God is the only one with that power. I feel extremely blessed rather than burdened. If anything, I see how so many others throughout our hospital stay have it so much worse than we do. Knowing he is controlling this situation, and that he has a plan, makes life a beautiful adventure, and I am so excited to see what is in store for my family.
I can remember the moment I found out I was pregnant so clearly. I was so in shock, and thought, “IS this really happening? Is God answering me?” Once it settled in, I would just catch myself smiling for no reason, thinking of the day she would be here, and I could hold her and kiss her little face. I was beginning a new journey, and I had no idea what was in store for us. Even more vividly, I remember the day we found out the news. We were waiting in the waiting room with my mom and dad, talking to another girl who was pregnant with her 2nd child. She would go before me into the sonogram room. I remember when she came out, she said “it’s another girl.” She was a little disappointed because she was hoping for a boy this time. My only real fear going into that room was that the baby wouldn’t be positioned correctly, and they wouldn’t be able to determine the sex. After all, I had taken off work the entire day, and was excited to do some pink or blue shopping. Looking back on the moments as I watched her, while lying on the table, I can see now that something wasn’t right, and we just didn’t notice at the time.
Jake was videotaping, and I was in awe of my precious little one moving around in my belly as she sucked her thumb. What could be wrong with that? When the doctor came in unexpectedly, I still didn’t let myself think anything could be wrong, until she sat down to tell us she had some concerns. I suddenly felt like the earth had moved from under my feet, and I was falling into a bottomless pit. Cystic Hygroma? May not survive? Specialist? I just saw her moving around fancy free! The worst part of all, was that mom and dad had to see us get the news. Mom was having lots of issues with work, and dad had recently lost his mother to Alzheimer’s. Poor Jake, how would this affect him? The look on his face, not knowing what to do or say, just makes my stomach turn thinking about it. I immediately tried to blame myself, thinking I was being punished for some mistake I’d made in my life. I’d made so many after all. Once the tears came they wouldn’t stop, and I just couldn’t get it all to sink in. We came home, and Jake took the day off. He held me, and we prayed together. I told God that I knew all things were possible through him, and asked him to please save my little one. I realized that Jesus wouldn’t have died on the cross and taken punishment for my sins, if I was going to be punished by God any way. It was pretty ludicrous for me to think that once I came back to reality.
The doctor warned me not to look on the Internet, and I wish I would’ve listened. All I could read was it would end in death, and how most terminate pregnancy shortly after finding out. I went through so many feelings: fear, sadness, worry, numbness, anger…nothing anyone said to me made me feel any better. On the way to my appointment with the specialist the next day, I heard By Your Side by Tenth Avenue North on the radio. I knew it was no accident that I heard that particular song in that particular moment. God was telling me He loved me, and that I had to give this to Him. I felt a bit stronger walking into the office. I then got some hope from the doctor , and had my amnio done. He said that the unexplainable happens, and that sometimes these things just went away. Knowing that the growth was a large one, and that there was little to hold on to, I still hoped things would be ok. I held on to that hope, and used the time to draw closer to God. I even wrote her a little story to read when she got here about how God healed her when she was in mommy’s tummy. The waiting was the worst part. From one appointment to the next all I could do is wonder If we’d hear a heartbeat, or not. Work helped me to keep busy, but the tears always came when I got to my car at the end of the day. As time went on, I would get better, but then the appointment day would arrive along with the sadness and anxiety.
We went to see my OB to listen for the heartbeat, and get our amnio results on a Tuesday. I was relieved to hear it beating at the normal rate. I couldn’t be relieved for long though because the news from the amnio was disheartening. We were told that our little girl had Turner’s Syndrome, and that with the size of the hygroma along with the other defects, she would most likely develop Infant Hydrops and die by the time I was 24 weeks. It was definitely tough news to swallow. Is God giving me this information that I may begin coping with her death, or is He telling me to expect the impossible and have more faith in Him? I knew that God was capable of far more than I had seen before, but was unsure of His plans. I tried to be strong, but it hurt. I was saddened every time I’d see a pregnant woman or small child. It seems like every show I watched on T.V. was about a sick child or a person having a baby. It made it even worse to think about kids I knew who had parents who didn’t care for them, or to think of people who got pregnant when they didn’t even want the child they were carrying. I admit, I felt sorry for myself some. I also questioned why God would answer my fervent prayers for a child, and then the child would be taken from me in this way. I started to think about all the people out there that were praying for us, and I was so grateful for it, but I just didn’t know what to do or how to feel. The more I thought though, I realized a few things. First of all, more people than I even knew about were praying for us, and prayer is a powerful thing. God loved me, and he hurts for me just like my earthly dad does. He had my best interest in mind, and knew more than I could ever imagine. I decided then, that there is a reason for this to happen, and I might never know the answer to why?. I also read this book the preacher had given Jake about losing a child. It put so many things in perspective. I was comforted by knowing my baby would have instant Heaven when she died. She’d never have to feel sadness or commit a sin. God could have been saving her from a life of pain and discomfort. Most importantly, I read that when I got to Heaven, she’d know me. I’d always known I wanted to go to Heaven, but it made me actually long for it, the way the songs I sang in church always said. What better place for her to be if she can’t be with me? She’d be safe in the arms of God, the only one who loved her more than Jake and I did.
We went in again to see the specialist not really knowing what to expect (as usual). To our surprise, they told us her Hygroma had gotten significantly smaller. Not only had it gotten smaller, but she was the exact size she should be for the length of the pregnancy, her heart looked good, and even her brain had the correct measurements. One of her kidneys wasn’t functioning, but the other was doing a great job, so it wasn’t a concern. I could tell the doctor and technician were surprised themselves. Immediately, I just thanked God for what he was doing with my little girl. It took a little bit to believe what they were telling me, and I continued to feel like I was on some sort of weird roller coaster ride. I could tell Jake felt like a load had been lifted. I began to feel that way too, and we decided to take things one appointment at a time, and to be cautiously optimistic. After all, our doctor sure seemed to feel that way. I set up an appointment with the Cardiologist to make sure her heart was doing well, and began to have the mindset that Avery would be here in June. As I waited on the Cardiologist appointment, I began to think back about things. Prayers I’d prayed, and things I’d asked for. I remember that on several occasions, I’d asked God to draw me closer to Him, and for Him to show me how to listen to Him. I was always so unsure about what God wanted from me. I wanted to be able to know when He was telling me to do something, rather than me telling myself to do something. I had a feeling a while back that God had more in store for my life, than what I was doing at that moment. I just wanted to make sure I knew when the time came, that it was time for me to do what God instructed. When I thought about all of those things, I thought, “may be this is it, may be He is drawing me closer to Him through this child.” I began to depend on Him, because I was so hopeless depending on myself. I thought I had given things to Him before, but I would always keep a small hold, thinking I could do some things on my own. I knew, that I could do nothing on my own, that I have to rely on God for everything. He’s the One in control, not me, or Jake, or the doctors, or the Hygroma and Turner’s. I began to see what it really feels like to let Him have all my worries like He had always said to in the Bible. He took my yoke, and gave me rest. I waited for what seemed like forever to see the Cardiologist.
Mom and dad came to Brookhaven with me, because Jake was in Texas with baseball. The doctor was very humorous, but I could tell he knew what he was doing. Avery seemed to be difficult with her positions, as usual, but he finally saw all he needed to see. Things looked good, and her heart was normal so far. I’d have to continue to see him throughout my pregnancy to ensure nothing developed, but what else could I ask for at this moment? She was growing and healing! I set my mind on getting things ready for her, and began buying clothes and thinking about the nursery. People began to tell me I had a glow, and I was feeling good. I was trusting God to heal her, and hoped my testimony would be one to show others how great our God is, and just what He can do in a life that trusts Him. As my next sonogram appointment neared, I was anxious to see what was happening with Avery. I went in, and the hygroma was almost completely GONE….so much so that they wouldn’t have even told me about it if it were my first sonogram. Not only was the hygroma better, but even her right kidney looked better. They couldn’t even tell there was a kidney before, but now the cortex was visible! Dr. Tucker said he’d seen much worse kidneys be perfectly normal by delivery. She was a little over one pound, and hadn’t skipped a beat with all that was going on! My little one was 1%, yes, 1% of babies with her condition who was likely to survive. Could I really begin to start enjoying this pregnancy without out all the mental stress???
That is exactly what I began to do. I began to feel normal again, and was excited about the arrival of this amazing little girl God so graciously was healing. In the back of my mind I wondered about the Turner’s, and how it would affect her, but I learned to put those worries to rest for the most part. God had done so much already, and the last thing I wanted to do was worry when He was telling me not to. I did print out information, and saved websites to check into later. I knew the basics, and the rest was up in the air. All of these children are different, and I’d just have to wait and see the characteristics Avery would have. I began going to see Dr. Kimmel every two weeks, because Dr. Tucker said that I could wait and come to him in eight because of her good progress. He told me to see Dr. Braden one more time, and that I shouldn’t have to see him again until her birth. This was great news! The only bad thing is I wouldn’t know about the progress of her kidney until mid-May. I would get to see her when I visited Dr. Braden though, so that was comforting. Jake painted the nursery and put her bed together, and I began to decorate. I hung her little clothes in her closet, and bought a few toys to place in her room. I couldn’t wait for my baby showers which were quickly approaching! Time was definitely ticking down!!!
I then find myself at 35 weeks, and realize it’s time to slow down a little bit. My school and Monroe showers went great, and it was neat bringing all of those gifts home. Jake set up Avery’s swing in the living room, so Manny could get used to it, and all of the sudden, there was something for baby in every room! I had one more shower left in Vicksburg, and couldn’t wait to see all the people who had really been praying for me and supporting us through everything. I went back for my last fetal echo with Dr. Braden, and nothing new had developed. He said he wouldn’t be surprised if she did have the narrowing or if she didn’t have it. He did fill us in that if she did, it shouldn’t affect her delivery, and they would give her medication to keep her well until they could do the procedure. The catch is we would probably have to go to Little Rock or Birmingham to have it done. I was focusing on her not having the problem at all. I did have a small breakdown after coming home from Brookhaven, but Jake helped me through it. I just knew she was doing really well inside of me, and it was a little scary to think of what might happen to her when she got to come out. On to the next appointment!
Dr. Kimmel decided she’d induce labor around the 15th of June rather than wait, so a full staff would be there. That way I’d be around 38 weeks, and her lungs would be ready. I became more excited to think Avery would be here, and I could hold her in just a few weeks! I could tell things were starting to wear on Jake though. The MC job turned out to be a less than smooth situation, and all of the sudden, we were faced with the possibility of no job again. It made me wonder just how much we were capable of taking, but it caused me to pray even more. So I go in for my last appointment with Dr. Tucker, and Avery was still below the appropriate percentile for growth. Her right kidney had also developed several cysts on it…one large on the upper portion and a few smaller on the lower portion. I wasn’t quite sure what to make of the kidneys, but the doctors didn’t seem worried, and her function was still there. They said she may have a small fatty patch on the back of her neck from the hygroma, but that there was nothing to worry about. I had, however, been worrying about inducing labor. Others around me seemed skeptical, and I worried it would put more stress on Avery’s little body and heart. I expressed some concern to Dr. Tucker, and he seemed to agree. He spoke with Dr. Kimmel, and at my next appointment, she decided to do a C-section one week later on June 9! I went from thinking she would be here at the end of June to mid-June to….she’d be here in one week! I became both excited and anxious, and kept busy with all the little things I wanted to get done before her arrival. I spoke with my distant cousin, Jason, who was doing his surgical residency at Oschner’s in New Orleans for Pediatric Cardiology. He explained a few more things about the situation with her heart, and told me what could and couldn’t happen. I became a little more worrisome about that situation, because I feared she’d have to be transported to UMC, and just didn’t know what to expect. I went on to my last shower in Vicksburg, and was happy to see Nicole, Suzanne, and several other friends and family members. Mrs. Turner made the cutest little dress that said “ I am a miracle,” and I thought about how very true that would be for Avery.
I don’t think I ever mentioned that a lady I knew who had been praying for me. She even asked if she could come to my house to pray over me for the healing of Avery. She stopped me one morning, and gave her testimony of God’s healing in her own life, and told me all the ways He was leading her to pray for me- so many things were much more than coincidence. I was honored that she felt that way, yet still a bit nervous about the whole situation. I had never experienced something like that before, and it was different for me. She wanted to come when Jake would be home, but it never would work out. He mentioned that we should never get in the way of what God is leading a person to do, so I began to feel more at ease with the whole thing. Deborah came over the Thursday before Avery was born after I had been to the hospital for my pre-admittance appointment. She began to tell me more of her story. She discussed speaking in tongues, which, I admit, had always freaked me out. Still, I listened, and decided to enter with an open heart. God has never given something like that to me, but it didn’t mean He wouldn’t give someone else that spiritual gift. I believe He chooses people for things, and He is never to be underestimated. If it happened in the bible, it can happen now. It was all new to her, so I didn’t feel totally awkward as things proceeded. After her explanation, in which she told me of all the languages God had bestowed upon her that she had never studied before, we read scripture and sang “ I Need Thee Every Hour” (which was my choice) and “I Must Tell Jesus.” After that, She lead me in giving praise to God for what He’d given us, which I participated in through prayer. She then began to pray over me, mostly in English, but some in Chinese, French, and even sign language. She laid hands on my belly, and asked for complete healing over Avery….heart, kidneys, chromosomes….everything. I began to feel at peace. It was all very new and very weird to me, but I never felt threatened or afraid. I had faith already that God could heal her, and I believed in miracles, I just didn’t quite know exactly what God would do with this situation…what was His will for Avery? He had already healed so much in allowing her to survive, would He continue the process, and make her completely whole? One thing that made me feel more comforted by what was going on is that Deborah was very humble. She didn’t take credit for anything that was going on- all praise went to God. She mentioned she was just a normal person, and that she was just trying to answer God’s will in her life. She didn’t go around telling everyone what God had done for her, she shared only with those whom He lead her to. She said she couldn’t pray for everyone, but that God put certain people on her heart, and those were the ones she focused on. She also mentioned that she would eventually be going to mission work in the countries where her languages would be of use. She said that she knew Avery would be healed, and that it might take time, but she would be completely healed. She said it would be a healing to glorify God- that others may know how great He is. It’s funny, but I had actually prayed that when we didn’t think Avery was going to make it. I had prayed that she would be healed, that others strength and faith in Christ would be magnified, and that her testimony would lead others to Christ. It’s so hard battling between the supernatural and the natural in this world. My sense of reason seems to overshadow who God is at times. I know it is mainly the devil trying to weaken my faith, and partly just my human nature.
There were only 4 more days until Avery’s delivery, so I couldn’t wait to see what God was going to present me with….what story would I have to tell?
The day of delivery we arrived at Woman’s Hospital at 5:30 a.m. They put me in a room, and began prepping me for surgery. I remember telling Jake that there was now nothing he didn’t know about me because he was in the room the entire time (except when they asked about spousal abuse). I didn’t really get nervous until I went into the operating/delivery room. I wasn’t just nervous either, I was plain scared! It was white and cold and there were these huge lights hanging over me. I remember the anesthesiologist poking me with a needle asking me if I could feel it, and I was so afraid of giving the wrong answer and feeling the doctors cut into me! Jake was there, holding my hand, but he looked more scared than I was! I remember them saying here she comes, and I heard that cry- which made me cry. Then, I saw her, and it was the more surreal moment I’d ever experienced. I was so relieved, and just thought that everything was fine. I was pretty jealous because Jake got to hold her, and was able to take everyone back to the nursery to see Avery. I had to wait in my room and ‘recover.’ Other than that, things were going great until the phone rang. The doctors discovered she did have the coarctation, and told us Avery was being transported to UMC as soon as possible. Not only had I only seen her for a brief moment while under anesthesia, now they were taking my baby away, and I was stuck in a different hospital. I did get to see her before she left in the nursery, and was able to hold her for the first time in the nursery. The transport woman brought Avery by my room in an incubator so I could say good bye and sign the needed paperwork. It was all so devastating. Jake and Faye went to stay with her in NICU. . After a near mental breakdown, I prayed with all my heart to be moved to UMC (which didn’t look like it was going to happen), and shortly after I was told to pack my things. That was probably the quickest answer to a prayer I’d ever had!
Once I was at UMC, I was able to visit Avery in NICU whenever I chose, and we also had a place to sleep because I had a room. It was difficult seeing this tiny baby attached to cords and monitors, but she did look peaceful and rested most of the time. The nurses were very kind and caring, and they would let me hold her at night sometimes. NICU was a little overwhelming with upwards of 90 infants. Avery was in the front though, so we didn’t have to see much of what went on with the others. There was Avery’s pod-mate, Lenaro. He was born at 21 weeks, and living in an incubator on a respirator. In the one week we were there (which included a weekend), Lenaro had no visitors. The only touch he got was from the doctors and nurses when they checked him. It was so disheartening to me to see a newborn baby with no one around to care for him. It made me shower Avery with even more kisses and touches than before. We spent a lot of time with her there, and put our parents on shifts so she wouldn’t be alone. It was very obvious how strong she was- she was a fighter. We waited and waited to find out about the heart surgery, and were told she might be airlifted to Washington D.C. I looked up the surgeon, and found he was world-renowned with accomplishments a mile long. It was very significant how things were timed.
Dr. Jonas, the surgeon, only comes to UMC once a month for a few days. It just so happened that he was flying in only a few days after Avery’s birth. They scheduled her surgery to take place on a Tuesday- Avery was one week old. The assisting surgeon came to explain the details of the surgery, and had us sign the consent. We knew the basics of the procedure before Avery was even born because Dr. Braden had explained it all to us. The extreme details were the things we could have gone without knowing. The thought of such a tiny baby having heart surgery is much more frightening when it’s a reality. We were also able to meet with Dr. Jonas, and I felt certain that he was the right man for the job. He told us she had a 90-95 % survival due to the circumstances. That sounds awfully good, but as a mother, you worry about the other 5-10%. Once I prayed and thought more about it, I realized that it didn’t matter what the statistics were, Avery had only a 1% chance to even survive the pregnancy. After beating out the 1%, 90-95% would be a breeze. I felt like God put everything in place with the surgery to let me know she was going to be ok. I did have those moments of weakness and extreme fear, but He helped me through it. When the day came for her surgery, they put Avery in the incubator and said I could talk to her and give her a kiss. When I looked down at her, she opened her eyes and looked at me…then she smiled. We had been trying to get her to open her eyes the entire time she was in NICU, and she finally did it. I think that was just another way God spoke to me to tell me He was in control. When Dr. Jonas walked in the waiting room, I felt relieved- he was smiling. He said the surgery went well, and said she was doing great. Even though I was relieved, it didn’t last long.
Once we got to the PICU, it was even more difficult. My precious baby had something attached to every part of her little body. She was very swollen from the respirator, and I was scared to touch her that I may mess something up. To make matters worse, the PICU is open to other beds. There were 2 other older children who had just come out of heart surgery as well. All we could do was sit and look at Avery, and strain as we listened to the cries of pain from the others around us. It was mentally and physically exhausting. We ‘rested’ in the waiting room with many other people, and sat next to her bed the rest of the time. All I could focus on was getting all those attachments off of my poor baby. They gave her meds for pain to keep her from hurting and from being fully awake. Once she came off of the anesthesia, I could tell she was totally uncomfortable. All we could do was rub her little head and hold her little hands to comfort her. Dr. Jonas had told us a few things that would probably happen to her, and he was right on. I would have been a lot more afraid if he hadn’t filled us in. After several days (which seemed like a lifetime) the respirator and cords came off one by one. I was so glad when they finally moved us into the transition room because she was doing so well. The transition room allowed us to have more privacy, and we didn’t have to see all of the other sick children any more. The down side is we were still getting no rest due to feedings, nurses, beeping monitors, and the one cot we had to share. I stayed hiding away in that little room with her, and tried to forget where we actually were for a bit. Avery began to look more and more like a normal newborn. I held her a lot trying to make up for lost time, and enjoyed every minute of it. We focused on getting her to gain weight so we could get her home. When the doctors decided she was ready, they told us we could take her home as long as she maintained her weight. She did, and we were able to leave the hospital on a Thursday.
Avery was 2 ½ weeks old. I was so scared the day we left because I felt like I was getting the flu. I had the chills and ached all over. I wouldn’t tell the nurses because I was scared they wouldn’t let us leave. I guess I was just hitting rock bottom. Once we got home, I passed out in the recliner holding Avery, and we slept for hours. I was just exhausted and coming down from my adrenaline rush.
Besides the monthly cardiology appointments, everything just began to seem normal. Avery was growing and hitting milestones. I enjoyed watching her change and develop so much- she was just such a sweet baby girl. Dressing her, of course, was also a lot of fun! I went back to work in August, rather than taking extra time off. I feared I would need my sick days if Avery had to have any procedures done. The first week of school, however, I had to take off so Avery could go in for a heart catheterization. Dr. Ebeid inserted two balloons in her heart- one in the same coarctation area, and the other in her aortic valve. This was the first instance we’d had with her valve. We knew from birth that it was a bicuspid valve, rather than a tricuspid valve, which is a normal Turner’s Syndrome attribute. We hadn’t had any problems with it before though. Now, there was narrowing and a significant leak there. It was worrisome, but Avery was in good hands with her doctors, and she still looked perfectly fine. It was so hard to believe when they’d tell us something wasn’t right with Avery, because she never shows the symptoms of what she is going through with her heart.
The catheterization went well, and we went about our lives for a while longer. A couple months later, Avery’s cardiology appointment showed a bad echocardiogram. Dr. Ebeid began discussing surgery on her valve at this point, and said he was worried to wait much longer. He waited another month, and decided to just go in the cath lab to take some exact measurements before making any more decisions. He had mentioned speaking with a surgeon in Boston, but said we’d talk after the cath. When he went in, he saw that the echo readings were off because of a second narrowed area. This cleared up the confusion he was having about her test results, and he felt much more comfortable with her situation. He told us we could definitely wait on surgery for now. When he had discussed the surgery with Dr. Jonas, Dr. Jonas had disagreed with Dr. Ebeid and didn’t want to do the surgery because of the high risk any way. So, once again, we went on with life, and things seemed fine.
The next month, Jake was unable to go to the cardiology appointment, so I took Avery alone, thinking nothing had changed. The echo showed that Avery’s heart function was bad and the doctor said it would only get worse. He told me that the surgery needed to happen soon. He told me about Dr. Bacha, who was previously in Boston but had recently moved to New York. I told him to move ahead and contact Dr. Bacha, and we’d make a decision based on what he said. Upon researching Dr. Bacha, I saw that valve replacement was his specialty. I also saw him interviewed and he seemed to be such a kind and caring man- not cold and distant like some surgeons can seem. He also had children of his own, and had been researching to find less invasive ways to heal children. I felt really good about what I saw, but was nervous about taking Avery all the way to New York for surgery! It all happened very quickly. We were contacted by Dr. Bacha, and next thing I knew, we were booking a flight and a hotel in Jersey. You would think the situation would be ridiculously stressful, but it actually went pretty smoothly. God was in control, and he made things happen. I was so busy getting everything in order, I didn’t have time to worry any way. I was, however, a little concerned about how we’d pay for everything, and what I would do about my job. I only had a few sick days left due to my pregnancy appointments and Avery’s appointments.
Amazingly enough, people (lots we didn’t even know) began to just give. We were given large sums of money, someone scheduled our flights with flyer miles, my co-workers donated sick days (58 to be exact)- EVERYTHING was taken care of, and I was able to just take care of Avery. I have never been more thankful or more humbled in my entire life. I felt so loved and touched by everyone’s generosity, concern, and prayers. I began to wonder why God was so good to me, and I realized even more that his plan for Avery was much bigger than I could ever imagine. The prayers for her came from all over- even in other countries. So many people followed us in New York through Facebook- it was crazy. We got through the surgery, which lasted about six hours. We were beginning to sit on the edge of our seats because we had originally been told it would be 3-4 hours. There were also no updates during this time, so that was hard. Once I saw Dr. Bacha walking in the waiting room nonchalantly with a Diet Coke and a smile, I had a feeling of relief rush over me and cried for the first time. I also praised God for sending us when he did. Dr. Bacha said he was very relieved we came when we did because Avery’s heart was doing worse than they even knew it was from what he saw once he opened her up. It’s just another way God lets me know that his timing is perfect- he is perfect. It’s so hard to even remember every little thing that God did because there were so many things throughout this process. I was worried about Avery getting sick and I was worried about the flight- I prayed and Avery remained well and was excellent throughout the flight. I prayed for a quick recovery, and we were able to return home 2 weeks earlier than we originally were told. I prayed when we were told Avery would have to return to PICU once we were on the floor due to a large amount of air in her lungs. Dr. Bacha suddenly appeared and stopped the other doctors from sending her back. People prayed that night, and the air in her lungs was gone the next day. She did so well the next day, as a matter of fact, that we discussed being discharged. We got to leave the day after that! We remained in New York for several days until the post-op appointment. Avery was still scared and shaken, but doing well otherwise. She was completely checked out at the post-op, and everything looked wonderful. We flew home the following day.
We went to see our local pediatrician, and she told me I just had no idea how good Avery looks for a heart baby coming back from surgery. I also overheard her in the hall speaking to another doctor about how amazing Avery is, and that she looks like nothing had even happened to her! I felt very special hearing her say that. There may be more surgeries in our future, but God is helping us take things one day at a time. People say they don’t know how I deal with it so well, and some seem to feel sorry for us. I, on the other hand, know that things are very different when you’re actually in this situation. You learn how to truly trust because it’s all you can do. There’s nothing I can do here- God is the only one with that power. I feel extremely blessed rather than burdened. If anything, I see how so many others throughout our hospital stay have it so much worse than we do. Knowing he is controlling this situation, and that he has a plan, makes life a beautiful adventure, and I am so excited to see what is in store for my family.
Things I never want to forget:
I always want to remember...
Seeing my mother cry when she knew I'd made a wrong choice in love. I wish I had listened.
Meeting Jake and seeing what a relationship is supposed to be like with God involved.
Hearing my dad tell his sister that I was going to be a great mom, and seeing him smile as if he were proud.
Wondering if my baby's heart was still beating at my Dr.'s appointments, and hearing that beautiful sound each and every time.
Realizing that God answers prayers, and he was answering mine.
Holding Avery Elizabeth for the first time before they transported her to UMC- then I knew she was really here.
Seeing the relaxed smiles on Dr. Jonas's and Dr. Bacha's faces when they came into the waiting room after Avery's heart surgeries.
Being humbled and amazed by the prayers and selflessness of others during our difficult time.
Understanding that my life was meant for more than what I was currently doing.
sounds...
my brother's voice when he sings
Avery's laugh and "mmmm-ma"
Jake's "do you need a hug?"
I'm sure I will add more with time.
Seeing my mother cry when she knew I'd made a wrong choice in love. I wish I had listened.
Meeting Jake and seeing what a relationship is supposed to be like with God involved.
Hearing my dad tell his sister that I was going to be a great mom, and seeing him smile as if he were proud.
Wondering if my baby's heart was still beating at my Dr.'s appointments, and hearing that beautiful sound each and every time.
Realizing that God answers prayers, and he was answering mine.
Holding Avery Elizabeth for the first time before they transported her to UMC- then I knew she was really here.
Seeing the relaxed smiles on Dr. Jonas's and Dr. Bacha's faces when they came into the waiting room after Avery's heart surgeries.
Being humbled and amazed by the prayers and selflessness of others during our difficult time.
Understanding that my life was meant for more than what I was currently doing.
sounds...
my brother's voice when he sings
Avery's laugh and "mmmm-ma"
Jake's "do you need a hug?"
I'm sure I will add more with time.
Subscribe to:
Posts (Atom)