One day at a Time...

When Jayden was in the NICU at children's we met with a few genetic specialists. It is normal to run genetic testing on any baby born with a birth defect so they took our family history. No one on either side of our family has any history of any kind of genetic disorder so we were told it was very unlikely that they would discover any chromosomal problems. So we went on about our new lives worrying about Jayden's feeding a breathing and basically surviving! But in April I received a call from one of Jayden's geneticists. They found something... They called me as soon as something showed up but wasn't able to give my any info because they still had to run more tests. They discovered Jayden has a large portion of his 4th chromosome missing. This was so unexpected that we were in shock. Needless to say I was terrified and my mind was racing. How could this of happened? And why? Did I do something to cause this? What will Jayden's future be like? and what about our future children? So many questions and many are still unanswered. 

Michael and I raced to Children's to have our DNA tested for this same deletion. It took what felt like forever for the results to come back but turns out it didn't come from either of us. So the geneticist squeezed us in as soon as possible because they were very concerned. Jayden's deletion consists of 25 missing genes which is very large. Just to give you an idea there are kids who are missing one gene and suffer from severe seizures . There isn't anyone else that has the same deletion as Jayden but they were able to find a boy in Spain that shares roughly 75% of the same deletion as Jayden. After meeting with the team we felt a little better. They were so pleased with Jayden and how he is doing! So far we know his cleft palate and PRS( small chin, small tongue and an underdeveloped uvula) are a result of the deletion. Jayden also is very little ( 0 percentile for weight, 5th percentile for height an 25 percentile for head circ), has delayed head control, underdeveloped back muscles and has low muscle tone. We wont know if those things are a result of his deletion until he is older. Jayden isn't anywhere close to sitting up on his own, doesn't push up on his arms during tummy time and some of his reflexes aren't where they should be. BUT enough of the negative! Jayden went from struggling to eat every bottle and choking to being able to hold his own bottle and eat with no problems! Jayden rolled over from his belly to back at 3 months and is so close to rolling from back to belly. He has great head control and loves to sit and stand with the help of mommy or daddy. He has a constant eye on mommy all day long and just loves to play with his kitties and toys. He smiles so big and laughs all the time and he also got his first 2 teeth! He puts a smile on the face of everyone who meets him! A speech and physical therapist come to our house once a month to help keep Jayden on the right track and will continue to do so. We are hoping with therapy Jayden will live a normal life!

We are unsure of Jayden's future at this point. He will probably be behind other kids his own age and have to work harder for everything. And that's OK! But then again he may surprise everyone! But the important thing is Jayden is here and healthy and happy! He had a rough start but he is our little miracle baby!

Jayden gained 6 grams(6lbs 12 oz), eating well and his bilirubin levels were down so we got to go home on February 10th! We couldn't be more excited!! We will return to Children's hospital in a few weeks to meet with plastic surgeons. They will come up with a plan for his surgery when he is 1 year old. 
Jayden is doing so well finishing his bottles and gaining weight. He is now 7lbs 6oz as of today! We are so proud of our big boy for working so hard. He still sleeps a lot but I think he has figured out his days and nights, Thank goodness!
We met with a lady from First Steps yesterday. First Steps is a program that offers speech therapist, physical therapist, occupational therapist and teachers until Jayden is 3 years old. They come to our home for everything so we never have to worry about getting out. We are very thankful and lucky!

Taking steps towards going home!

Jayden had his feeding tube removed yesterday! They let him be on his own schedule to see how he did. He took 4 bottles in a row for me! We hope he did well overnight too. His bilirubin levels were also low enough that he didn't need the UV lights. It was so nice to get to love on my baby boy without a tube in his nose. We expect the doctor to tell us a better idea of when he can come home. 

We are so excited to take our boy home!!

It's been a long and eventful week here at St Louis children's hospital, but Jayden has made a lot of progress! After getting to st. Louis the speech therapist tried yet another bottle to see if he would take it better. It was a slow process at first but he is getting the hang of it. Tuesday morning Jayden was taken off oxygen just to see how he would react. He did fantastic and hasn't had to have it since! He was upgraded to a crib in the NICU but had to go back to a warmer bed because his jaundice was getting too high. He spent the day under the UV lights. It kills me not to be able to hold my baby but we are hopeful we will be able to soon. We have met with countless doctors and specialists over the past week and are overwhelmed with information. We have enough books and binders to have our own library! 

Jayden will have surgery when he is around a year old to correct his palate and most likely get tubes put in his ears. He failed his hearing test but that is common for cleft palate babies. We do know he can hear at least something though! 

What Jayden has to do to go home:
1. Take full bottles (no feeding tube) for a day! 
2. Get his jaundice to a normal level
3. Take out that stinking feeding tube! 
4. Pass car seat test 
It's twice as hard for Jayden to take a bottle than other babies. He can't create a suction due to his palate so he is using a special bottle made for cleft palates. He started taking such a small amount but has improved. After half the bottle is gone he is just so exhausted he needs the rest in his feeding tube. He is a strong lil guy though so we know he will keep improving!  

The Beginning

     It's 11:25am January 29th, 2015 and I am seconds away from giving birth to my first son Jayden Michael Hamman. The nurse is telling me to wait to push because the doctor isn't in the room yet. Jayden is on his way faster than we thought. My doctor arrives and quickly sits down on the bed and gets ready for the last push. 

Jayden is born. 

     My husband Michael moves towards the end of the bed to cut the cord as we had planned. The doctor however quickly clamps and cuts the cord; and hands him off to the nurses. I knew something was really wrong; he wasn't making any noises. This isn't how it was suppose to be. No more than 10 seconds has passed and there are now 5 more nurses from the NICU (Neonatal intensive care unit) working with Jayden. I finally hear Jayden cry out and it terrifies me how long it took. A nurse walks over with Jayden and I hold my baby boy for the first time. No longer than 20 seconds pass with him in my arms and they take him away to the NICU. As Jayden leaves the head NICU doctor tells my husband and I that Jayden is born with a cleft palate, and due to his cleft palate he inhaled a lot of fluid during birth.

     Two and a half hours pass by before they okay me to leave the labor and delivery room. I leave on a bed and they take my husband and I to see Jayden in the NICU. They have him on oxygen, a feeding tube through his nose, and several cords monitoring his breathing and pulse. Along with a cleft palate Jayden was born with a small chin, small tongue and his uvula wasn't developed correctly.

     Four days pass trying to lower the amount of oxygen Jayden needs and trying to find a way to feed him without a feeding tube. During this time the doctors inform us they don't have the specialists at the hospital to help him with his cleft palate and they will have to transport him to St Louis Children's Hospital on Monday. Monday comes and we say goodbye to Jayden as a team of doctors and nurses strap him to a gurney and take him to a helicopter headed for St Louis. 

Our journey has just begun...