I am a very outgoing and exciting person, yet my husband is the quiet and reserved one. Recently we have both been a bit reserved and for good reason. I'd like to share our story, Jase's story, with you.
As you read and are looking into our lives for the past two months, I want you to know that we are not looking for sympathy, but more for understanding and hope that our story will inspire others and be a comfort to others as well.
Corey and I were married in September of 2008 after a lengthy deployment. From day one we knew that we wanted children. In 2010 we decided that we were ready to start a family. Exciting as it may be, the excitement dwindled with each month and each negative pregnancy test. June of 2012, my doctor decided that we should start looking into fertility treatments. I was to meet with a fertility specialist in August. To our surprise, God had answered one of our most lengthy daily prayers. July of 2012 was life changing. I was pregnant. Corey and I couldn't have been more ecstatic. We told our parents and spread the news of our upcoming bundle of joy in September. We could hardly keep our excitement a secret.
My pregnancy was blissful and exciting each day I got to watch little Jase grow and feel him move. We had our initial ultrasound as well as the gender ultrasound. Jase was a healthy baby boy and I was doing great as well.
I was put on bed rest a few weeks before Jase was born due to not gaining enough weight. Our doctor told me that Jase was a small baby and we both needed to gain weight.
To our surprise, Jase was born a happy and healthy baby at a whopping 9 pounds 5 ounces at 4:09pm on a rainy Saturday evening. Sometimes the docs guess wrong. ;-)
On this day April 27th, God had given us the most precious gift that we could have ever received. Immediately he was adored and loved by all. I noticed immediately that Jase wasn't nursing appropriately, but I was assured that he would figure it out soon. We spend all evening cuddling our little boy and showing him off to our family and friends. He was taken back to the nursery around midnight to have his bath and to be checked out extensively.
At 2a.m., our world was turned upside down. Corey was asleep and resting in the bed next to me while I was still awake reliving every moment from the past 24 hours and taking in every second. A nurse walked in with Jase and told me that she had some bad news. She told me that Jase had a birth defect and wouldn't be able to feed right. She handed me a glove and asked that I feel the roof of his mouth. She showed me the roof of his mouth and told me that he was born with a
cleft palate and probably because I did not have enough folic acid. You
could imagine the guilt that I had. After that, she left. Corey was still half asleep. How was I going to tell my husband the news that I had just received through my tears and the pain that I was feeling while holding our precious little one? I was going back to every day that I was pregnant wondering when I had missed a prenatal vitamin. I was feeling guilty and couldn't imagine that I had caused this. Corey and I sat there holding each other and praying over our precious miracle. Praying for healing, strength, and knowledge. I prayed harder than I ever had that God would help us raise this child
to love himself and for him to show others how perfect he is. I spent all night researching about cleft palates wondering how I was going to feed my baby.
The next morning, we met with the hospital pediatrician who told me to continue breast feeding because he was doing fine. Little did we know, that he wasn't doing fine. The day we left the hospital we went directly to Jase's pediatrician. We found that he had lost over a pound and was close to being put back in the hospital on a feeding tube. We were put into direct contact with the cleft team at Children's Hospital and were going to get to meet what we didn't know at the time were the most amazing people that we could ask for. The night before meeting with the team we had created an assembly of different bottles, nipples, and gadgets trying to feed Jase.
Tuesday morning we met with Emily Copeland who is the R.N. at Childrens over the cleft team. Oh how God had answered a prayer. We were greeted with the first positive person that we had seen in days. All smiles and excitement, Emily informed us that Jase had Pierre Robin Sequence. She told us that basically Jase had his tongue at the roof of his mouth during 6-10 week gestation or was simply just sucking his thumb. RELIEF! After feeling guilty for three days, Emily reassured me that there was nothing that we could have done. Jase was just going to be a thumb sucker or had his tongue at the roof of his mouth. Here at Childrens Hospital, we met with his surgeon, speech pathologist, nutritionist, nurse, and the rest of the team. Here we learned how to feed Jase and we were given all of the information and tools that we would ever need. We were assured that Jase was a normal baby and would grow up to be a handsome young man and normal as any other. Right there I wanted to jump up and hug each person that came in the room with a smile on their face, excited to meet Jase, and who set us at ease.
Leaving Childrens that day, I was in tears. Happy tears. We had just met a group of the most positive, sweetest, and most caring team of doctors and nurses. I can't thank them enough for the smiles and positive conversations that we received that day.
What all this means for us is that we will be visiting our pediatrician
monthly for weigh checks, etc. We will also be seeing his team of
doctors frequently until he is two years old. At 10 months old he will
undergo reconstructive surgery to fix his cleft. He will never know that
he had it unless we tell him.
Right now we are struggling with feedings and others views which is the
hardest part. I just ask for your prayers especially during his 10th
month. Yes, I will be a complete wreck!!!!! He'll have to be in the
hospital for about a week to help his mouth heal. He will have arm
braces on for three weeks to keep him from putting things in his mouth.
At 9 months Jase has to quit using a bottle and start using a sippy cup
that just flows. Pretty sure he is going to take all of this better than
Corey and I ever will.
Our little boy is still perfect in our eyes
and we thank God for him daily. Currently we have only told our parents
and a few close friends. Talking about Jases condition is still very
difficult. In his short 8 weeks of life he's been to the doctors office multiple times.
The hardest part is having others question the type
of bottle he's using and us having to simply explain the reasoning. The
questions come out of ignorance, so no feelings are hurt, yet still
having to explain that your baby is not "perfect" is still hard being a
new mom.
I've told you our story, not for sympathy, questions, or
just to tell, but just asking for understanding and informing others. I hope someday that I can be that supportive shoulder that a new mom would need in a similar situation. In the beginning, all we were looking for was a smile, someone who understood, and just a hug.
We are truly blessed with Jase and I can't thank God enough for putting him in our lives. Today when I look at Jase, I completely forget about his cleft. The only times that I am reminded of it are when others ask about his bottle. In our eyes, he is perfect. God gave him to us for a reason. We may not know why he was given to us with a cleft, but somehow it's in God's plan.
You may have questions, such as "What type of bottle?", etc. All of these can be answered at www.cleftline.org. I ask that you do any research here. The internet can be cruel and lead to misinformation.
And of course...a few pictures of our little one. :-)
Check back for Jase's updates frequently. I can't wait to share with you the Eisenhower happenings as we grow closer and closer as a new family! :-)
(MY ALL TIME FAVORITE) James 1:17 Every good gift and every perfect gift
is from above, coming down from the Father of lights with whom there is
no variation or shadow due to change
Psalm 139:13-16 For
you formed my inward parts; you knitted me together in my mother’s
womb. I praise you, for I am fearfully and wonderfully made.Wonderful
are your works; my soul knows it very well. My frame was not hidden from
you,when I was being made in secret, intricately woven in the depths of
the earth. Your eyes saw my unformed substance; in your book were
written, every one of them, the days that were formed for me, when as
yet there was none of them.
which is a pigeon nipple that goes on the regular medela bottles. AMAZING! This nipple looks normal to anyone else's eyes, but it still has a valve where the milk can't back flow. It also has a hard top and a soft bottom on it. This way all Jase has to do is basically bite down and the milk flows out. I am thanking God daily that he has finally figured this out. I was dying over here feeding my kid like a bird. 
