Here’s what happened..
She looked over and told me that yes, they saw some abnormalities. Our baby had one clubbed foot and two large cysts in his brain. Which is a sign of
Trisomy 18. She then explained our options for testing and said that if the baby was born with Trisomy 18 we would have the option to terminate the pregnancy. And because I was 21 weeks along โ and legally this can only happen until 23 or 24 weeks โ we needed to move fast.
I remember just crying on that table, squeezing Williams hand to pieces. I remember William crying.
She took us into her office and pulled out a giant book with pictures and diagrams and information. She explained what Trisomy 18 was and what the outcome would be.
She said 50% of the babies with this are born stillborn. And if somehow he makes it through birth โ his life expectancy would only be one year. She said he would be severely mentally disabled and have no quality of life. Most babies only last a few days after birth.
After we spoke with her, we confirmed that we wanted to have the testing procedures done. And then when I got up to change into the gown a strange sense of calm swept over me. I kept thinking I can do this โ itโs going to be okay.
I changed into the gown and went into the ultrasound room where they preformed an
Amniocentesis. I couldnโt watch them do it โ I just had my head turned and looked at William the whole time. I felt as the needle poked through my stomach and was pushed deeper to get to the amniotic fluid. It all seemed to happen fast โ and we were out of the room in 10 minutes.
I put a band-aid on my stomach, got dressed, and we left.”
levi
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I had to share that full post. Because it was one of the worst days of my life, and I honestly couldn’t re-visit to write about it. We left that doctor’s appointment, devastated. The doctor was telling us she had never seen cysts that large – and the cysts she had seen that were similar in size were in the heads of babies that didn’t make it. William and I spent the whole week waiting for test results. I spent most of that week in bed, sobbing. And the worst part was I could feel little Levi within me, kicking, moving.
I remember sitting on the couch with William – feeling Levi kick.
I told William I thought that was Levi’s way of saying “don’t give up on me“.
On J
uly 17th, 2013 the results came back. Levi DID NOT have Trisomy 18. We were told he would still need surgery to remove the cysts and that he still may have some brain damage. And, we knew he had clubfoot. Weeks went by and we were still in
transition. We had spent an entire week thinking we wouldn’t have our baby, and then all of a sudden – we knew we would.
Then, something absolutely wonderful happened. We went in for another ultrasound and Levi’s cysts were GONE. The technician and doctors were stunned, they had never seen this happen before.
The same people who told us they were 99.9% sure that Levi wasn’t going to make it were now telling us he was FINE.
Everyone asked us if we were mad. If we were going to march into the doctor’s office and yell. But in that moment, all we could do was be grateful. We had prayed and begged God to help us. My husbands mother, Kathy had passed away years earlier from Cancer and we would sit together and talk to her most nights during that difficult week. I asked her to watch over Levi if he somehow ended up in heaven with her. I asked her to do anything she could to help us. And in my heart, I feel like the reason Levi is here today – the reason those cysts disappeared – the reason that those tests came back fine – that is all because of her.
Levi was born on Halloween. He was born with bright blue eyes, and still has them to this day, just like his nana, Kathy. Neither William, nor I, not even Wyatt.. none of us have blue eyes. That is Kathy, her spirit, her love, shining through in her grandson.
So, after all of that. After that roller coaster, when we were sure the only thing we would have to deal with was clubfoot, we were relieved. And after Levi was born we met with a wonderful doctor and started the Ponseti treatment with a series of casting.
We had six weeks of casting before little Levi was ready for his boots and bar. After six casts, his little foot had already made so much progress.
I’m not going to lie – the casting process was no bed of roses. Levi was fussy when he tried to fall asleep at night but he was comforted by swaddling and snuggles. After the fifth cast, Levi had surgery to clip the Achilles tendon to help release his foot, he was then casted with cast #6 and that cast was left on for a few weeks while he healed.
After the sixth (and final) cast was removed, he was ready for his new shoes.
Levi did worse with the shoes than he did with the casting – but after a few months he got used to the shoes and did wonderfully! At first he had to wear the shoes 23 hours per day – this lasted 3 months. After that, he was moved down to 18 hours per day.
Levi is now 9 months old. He continues to wear his shoes 18 hours per day, and his foot continues to correct itself. He is a happy, outgoing, and loud baby. He laughs ALL the time, smiles ALL the time, and is completely used to his boots and bar. His doctor thinks by the time Levi is two he will be cut down to 12 hours a day on his boots – this would mean he would only have to wear them while he sleeps.
His feet look wonderful and he is scooting all over the floor even with his boots on. He inspires me every single day to push further and do more. His spirit, the amount of fight he has in him, and his strength is just unbelievable. He is one of our greatest blessings and we feel so lucky to have him in our lives. He spreads happiness everywhere and hasn’t come across a single person that he couldn’t get a smile out of.
I should have known that night on the couch, when I felt those kicks – that everything would be just fine.
HOW YOU CAN HELP:
One out of every 750 children are born with Clubfoot. In developing countries, many children go untreated because of cost and access. This campaign has a goal of raising enough money to donate to NINE different developing countries – and to provide as much treatment as possible to those suffering with clubfoot. ANY amount you can give will help CHANGE a child’s life.
ALL PROCEEDS FROM SIDEBAR ADS ON SONGBIRDS & BUTTONS FOR THE MONTH OF AUGUST/SEPTEMBER WILL GO DIRECTLY TO THIS CAUSE. IF YOU ARE INTERESTED IN PURCHASING A SIDEBAR AD PLEASE EMAIL ME DIRECTLY!
If you can’t donate – HELP us to spread the word!
Ohhh gosh this makes me want to cry. I didn’t know all the details of what happened before he was born but I am so so happy that the cutest little boy in the world is happy and well.
My sister and I were pregnant at the same time back in 2012, and she ended up finding out her daughter had Trisomy 18. Her little girl was stillborn at 30 weeks. I was so glad to read that your baby doesn’t have Trisomy 18 after all! It made me so happy! He’s so adorable and happy, and I’m so glad that you got to keep him! What a blessing!
What a trooper– he is darling! sharing on FB and Twitter!
Wow what a journey. Levi is the cutest baby ever!
Oh lady this hits so home to me. When I was a baby I was born prematurely. This caused a lack of development of much of my body. Part of this was that my foot was not clubbed but did turn out and I had to use that same brace. I can say that the brace works and I can now walk normally and my feet do not turn. Now I must go get another box of tissues! Btw he is the cutest little boy!
Oh my this brought me to tears (I am such an emotional person)! Levi is such a blessing and he is so handsome!! What a lucky guy ๐
My sister in law had her son and they told her that he would not be able to walk until 3 years old and that he has Muscle Scoliosis. Long story short, he learned to walk right after his 1st bday. He is 2.5 years old now and just yesterday he wrote a 2 wheel bike all by himself.
It’s amazing how much they progress! Levi has such a bright future a head of him! I cant wait to watch him grow ๐
rode*
Such an amazing story! He looks like such a happy boy ๐
What an inspiring story. Levi is so lucky to have you guys, and you are so lucky to have him! Thanks for sharing this beautiful, triumphant love story. ๐
I definitely had chills all through reading + was tearing up while reading– what a wonderful + touching story! God works in mysterious ways and I am so precious that you have your precious Levi!
Levi is so cute! I’m so glad your story has a happy ending. Thank you so much for sharing โฅ
He is gorgeous. Absolutely gorgeous. What a beautiful blessing Levi is.
I can’t imagine going through that rollercoaster but Levi is a complete joy! He is so precious. Thanks for giving more info about club foot! I
He is a beautiful miracle!! I love that everything worked out. I have had friends with kids with a club foot and I know it’s a lot but they are all perfectly fine now and playing sports. Levi looks so happy and wonderful.
What a darling! So glad for the happy ending.
Hi! Stopping by from Mom Bloggers Club. Great blog!
Have a nice day!
Such an amazing story and a great cause to donate to! I had to wear special shoes as a child because my feet were turned in, but I didn’t have Clubfoot, and now Vivi is likely going to have to get braces because her feet are far more severely turned than mine ever were. I do fear, that because of her age, and how turned her entire legs are, that she might require surgery. Ugh.
What an absolutely beautiful little blue eyed boy you have been blessed with. I’m so so pleased you didn’t give up on him – the world (and above) really does work in mysterious ways! Very best wishes for his future and your happiness as a family.
Thank you for sharing Levi’s story!
Katie <3
Such a sweet story. The pictures are all so wonderful. It’s extremely evident what a blessing he already is on your family. Such a cute, sweet boy!!
This story almost brought me to tears. I’m so happy that it’s worked out for you, he’s such a beautiful baby.
Your story totally had me bawling over here. Though no where near dramatic as yours it hit kind of close to home for me. We took our daughter in for her school physical this year and her pediatrician told us she heard a abnormal murmur in her heart and wanted us to take her to the pediatric cardiologist. I cried every day until her appointment. She had a heart murmur when she was first born but we were told it went away and hadn’t heard anything about it until just this appointment. That was nearly 7 years so to say the least we were shocked. Like you we lost my father-in-law last year and prayed every night for him to do whatever he could to protect my child. Then when the appointment came and having to listen to her have a ultrasound done on her heart not knowing if the sounds we were hearing where normal or not was gut wrenching. But I can imagine the relief you felt when you were told his cysts where gone because it was the same relief I felt when I was told my baby had a strong heart and that her murmur was innocent. It was like you can finally breathe again. I am so glad Levi is doing great. He is precious and I hope he continues to do so awesome with is little boots.
Oh, man. Melissa! Your comment had ME in tears! I am so happy your little girl is fine – xo. Thank you so much for this!
What an amazing baby! And what a great organization. So glad you can lend your voice to them!
Levi is a blessed child, thank you for sharing your story I don’t know what I would have done in your situation. God bless bad continue to bless your family
Congratulations, his adorable, you’re all going to have an amazing journey together
What a story. Im so sorry you guys had to deal with it. But love that you shared it
Oh my gosh. Wow. Incredible story. Levi is such a beautiful little boy. <3
Levi is utterly gorgeous! Such an amazing story.
I’m so sorry your pregnancy was so stressful. I cannot imagine what that is like. Luckily you have the sweetest, cutest little boy!
Thank you for letting us all into a hard time of your life. I cant even imagine having to go through something like that. He is sure darling though! Blessed.
I had no idea the stats on clubfoot births were that high. I’m glad there is something to help and think it’s great that you are helping spread the message!
Oh my goodness what a blessing he is! I’m so glad everything turned out and that he his happy and healthy. I have my anatomy ultrasound tomorrow and I’ve always worried that there would be something wrong. Such a scary experience.
What an amazing story! God bless your family, especially your sweet, adorable little boy! It was amazing reading about the miracle and seeing your sweet baby!! #godisgood
What a beautiful story! I am so happy that in the end you only have to live with a treatable club foot. I would be absolutely heartbroken if I found out if my child had Trisomy 18, but my husband doesn’t want to do the genetic tests!!
OH my goodness, what a story. I had no idea about these medical conditions so I am really glad you had links explaining them. This is such an incredible journey you have been on. Thank you for sharing with us and I cannot wait to see more of Levi’s story.
You all are troopers.. And baby Levi is too cute! ๐ Thanks for sharing your story
Thank you for sharing this story. It reminded me so much of my mom who had me born with no idea what was wrong. No matter what love him, and if he should ever bust dad’s nose in some unexpected way go easy on him (Trust me…). There will be ups and downs for him, and remind him when he gets old if the kids make fun of his leg to come up with a cool nick name. One of my close friends helped me come up with Hop-Along Gretzky way back in the day (Yes I am much older these days, but getting that nickname is completely another story….. lol). As soon as Hop-Along Gretzky replaced all the other mean and silly names (Wishbone, Slinky, 5 iron, etc.) I secretly loved that one because it got rid of the ones I hated. Over time I learned how to hide all the things wrong. It was my choice to hide the problems until I was ready to let someone know. I worked very hard through the teen years to correct my speech, my walk, but never changed my look (When your son shows his beauty from within he won’t need any Photoshop I promise you that…..) As I am sure you know even in today’s world it can be a mean and cruel place. I simply choose to go into a situation where no one would know. There is no greater satisfaction when someone learns the truth and realizes that I proved them wrong. For your son just support him whichever way he wants to face the world like my parents/grandmother did and you will be fine I assure you. I will shut up with my long winded rant now and close by saying what my grandmother always said to me, “imperfection is perfection.”
Oh my gosh. What a beautiful, handsome little boy. Thanks for sharing your story with us ๐
I am so happy to hear that Levi is doing so well! He sure is loved, and lucky to have you as his momma : )
What a blessing! Happy Birthday!! I found at 20 weeks my daughter had a cleft lip and palate…she’s now 3 and it was no walk in the park but it’s those times we look back at and remember when times get hard, they actually serve as inspiration now! Beautiful Family!!
Thank you so much, Carissa! Your daughter sounds like an amazing little one! ๐
Very enriching testimony, thanks for sharing it. It is like a relief for me and my wife who are starting on the path of treating a baby with clubfoot. I would like to ask you something, maybe you could share with me where can I get the boots and the bar? soon my baby is going to need them. I do not reside in the United States but I have been told that you can find the appropriate one there.