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 – and legally this can only happen until 23 or 24 weeks – 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 – 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 – it’s going to be okay.
I changed into the gown and went into the ultrasound room where they preformed an Amniocentesis
. I couldn’t watch them do it – 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 – and we were out of the room in 10 minutes.
I put a band-aid on my stomach, got dressed, and we left.”
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 July 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.
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