Wednesday, September 9, 2015

On This Day One Year ago.....

On this day, one year ago, we welcomed a precious 9lb, head full of hair, baby boy :) God has blessed us with much joy and showed us just how special our son was and how much He thought of us to send us such a gift. 

After a long hard two days of labor, at 4:03am, September 9th, 2014 we got to meet our hunk of an amazing bundle of joy and sweetness :) He was perfect. Shortly after he was born we were transferred to a room where we began to make ourselves comfortable and soak in this new chapter in our lives, parenting. 

Of course not long after Caedmons debut into the world, was his pediatrician check. The pediatrician entered the room, took a look at Caedmon, checked his heart rate, etc etc. Then there was a little silence as he stared at Caedmon and then looked at us. The next words he would say, would stay with me and echo in my head over and over and over. "We believe your son has Achondroplasia, a form of dwarfism, there are a few tests I would like to run". I of course am in a state of shock and denial and outraged at this pediatrician that he would even think such a thing and then push for these tests. He told me after I had told him that my husband and I would like to discuss this and as of right now we see no need for these tests( personally just thought he was trying to get money out of us)that "what kind of parent am I to not have these tests done?" and started to argue with me. First off don't argue with a woman who has just went through 2 days of hard labor and given birth to a 9lb child and secondly don't question how much we love and care for this child. I was fuming mad. After many calls back and forth we finally decided to get a scan done of Caed's neck and head, but while on the way down the nurse noticed that Caed was breathing very hard and rapidly and called the pediatrician and they admitted him into the NICU. This was Wednesday late morning( the day after Caed was born). Josh answered the phone call telling us what they had done and then he broke the news to me. I took it well at the moment but, when I was getting ready to be wheeled down to the NICU I had a moment of overwhelming emotions and tears. I had never been in a NICU and all I knew was pictures of children in the big clear cribs with all these tubes hooked up to them. I wanted to see my son and knew he was alone down there and I had no idea what I was going to find. 

I hadn't heard much about what was going on with him but I knew that when we got down there hopefully someone would tell me what was going on. Once we arrived, after washing several layers off our skin, we found Caed just chilling under the warm light on his back arms by his head and legs spread out. Looked like he was just chilling on a beach somewhere. After a good little laugh at the that fact and the fact that he was the biggest baby in there and that the nurses loved his hair, it made things a little more bearable. He was admitted for respiratory issues due to small lungs and nasal passages. They knew he had dwarfism but didn't push that on us as they knew we were dealing with denial and of course were blinded to the obvious signs medically because we didn't know. They kept referring to Caed's hands as trident hands, basically an obvious sign of dwarfism which we later would realize and come to a state of clarity.   

The hospital allowed us to stay an extra day in our room while Caed was in the NICU and then the next night we were given a parent room. Caed was put on O2 and a feeding tube as we had problems with breastfeeding and bottle feeding. He wasn't a fan of either. I was given the cursed pump and so began my great bond with I and Medela(the pump) The doctors and nurses were so nice and encouraging during this time. 

The first night that we had to go home without our son was very hard. New parents never think about that as a possibility. You pack your bags and the car seat and all those cute little outfits that you can't decide which you want to put your new little one in. You look forward to the wheelchair ride down holding that car seat full of that little bundle you had pictured in that empty spot for weeks leading up to their perfect arrival and venture home. Our first trip home was empty handed and a few errands to Target to get some needed baby supplies. It was hard and my heart goes out to any parent that has to endure that. Walking into your home with all the baby gear empty and room just waiting to be filled, I can't imagine how a parent who has lost their child feels because in that moment I felt so empty and my child was only in the NICU. I knew we would get to bring him home but just didn't know when and that killed me! Josh and I went to the NICU everyday(Him until he needed to go back to work). We always hoped that today would be the day! But, It was a long 2 weeks of weaning Caedmon off his O2, feeding tube, and getting his stats and weight up, and of course a failed car seat test. Thought we would never hear them say those three words, "you're going home!". 

September 22nd at around noon we got word that Caed was going home! Not in the car seat that we pictured and not free from wires and tubes(as we would find out later)  He was sent home on an a sleep apnea monitor and in a "car bed" basically a car seat that lays flat to help with his respiratory issues. We were sent home with many scheduled appointments to see a cardiologist, speech therapist, and a geneticist just to name a few ;) 

November 6th was Caed's geneticist appt where his diagnosis was confirmed. We went through a time of denial and after the confirmation we couldn't do anything but love our son more and seek God for wisdom on this new journey. It's been a rough year with many a doctors appts, new devices(O2 and pulse ox), a weeks stay at UVA and a sleep study done. We have jumped many hoops and are blessed that there haven't had to be any surgeries thus far and that he is doing wonderfully!

This next year of Caed's life we have no idea what it could hold medically but we do know that our little guy has us wrapped and that we would do it all over again! He has brought so much joy into our life and lives of others with his goofiness and scrunched nose smile. He has opened our eyes to how God creates us all differently. Caed may be shorter in stature and may have to work harder at things that come so easily to us average height people, but God has given him a personality and temperament that will do nothing but persevere and overcome. We are blessed by so many who have already helped and encouraged and prayed for Caed and us along this path. We are grateful for all the outpouring love you show us daily, through sweet comments or private messages sent to me. We are proud of our son and all he has overcome and accomplished already in a short year's time. He is right where he is supposed to be as far as physical and motor skills go. Every small thing is a huge celebration! Thank you for being such big cheerleaders along the way! We ask for continued prayers as we enter this new year in Caed's life. Next Month(October) is Dwarfism Awareness Month. Please pray for all the families that are raising these precious miracles :) and Happy 1st Birthday, Caedmon. Mommy and Daddy love you to the moon and back and we wouldn't change a thing about you or how you entered the world! God has amazing plans for your life!













3 comments:

  1. Bethany,
    This is so beautifully written about your precious boy. I am a friend of your parent's from Shorter days. I celebrated their wedding, and the days all of you kids were born. Lori said pray for you, Josh, and baby. We have prayed for your family everyday. What wonders God is doing in Caed's life. He is such a precious little boy. Keep pictures, and stories coming of this wonderful gift. I love his scrunched up little nose - you can just see his eyes twinkle. Blessings to you all.

    Love,
    Julie Woods Byers

    ReplyDelete
  2. Bethany, thanks for sharing this wonderful story. Caedmon is adorable! Debbie keeps us informed about his progress. The Lord chose just the right parents to take care of and love one of His precious children. Enjoy him!
    Loretta Campbell

    ReplyDelete
  3. Bethany, thanks for sharing this wonderful story. Caedmon is adorable! Debbie keeps us informed about his progress. The Lord chose just the right parents to take care of and love one of His precious children. Enjoy him!
    Loretta Campbell

    ReplyDelete