amyjo

I want to say THANK YOU from the bottom of my heart for all the support, the advice,  the stories,  and prayer that were sent to me and my son.  As you may be  aware, I reached out and posted Please Help Save my Son. 

I had no idea our journey would be filled with so many emotions. 

I felt heartache and pain as I watched my son slip farther and farther away from me.  I was not allowed to hold him or comfort him.  All I could do was sit next to him and pray.  I would hold his little hand and tell him how proud I was to have him as my son.  

Kaden lived on a ventilator for 3 months before his surgery took place.  As a mother, I never felt so helpless. I was frustrated  and angry at the doctors for wasting precious time.  We were at battle with weight gain.  Kaden needed a complete AV Canal repair, but he was too fragile and tiny.  His weight dropped  down to 4 lbs.  No matter how much they fed him, he would only gain a few ounces.  This continued day after day.  It was a waiting game that we were playing.   I finally reached the point were I was tired of watching my son be poked with needles, his lifeless body staring me in the face.  I broke down and cried for hours.  My tears soon turned to anger.  I walked out to the nurses station and demanded to talk to the team of doctors and surgeons. For I had enough.

Surgery was scheduled the next morning.  I could not sleep. I sat there wondering if I made a mistake.  I couldn’t bear the thought of losing him. I knew deep down that we couldn’t wait any longer.  I watched the hours pass by until it was morning.  The fear took a hold of me when they came to take him to surgery.  I walked next to his crib as they wheeled him down the hallway.  We came to a set of doors and they told me to say goodbye.  I lost it.  I had no idea if I would ever see him again. Time stood still.  For that moment meant everything to me.  I leaned over and told him that I loved him and gave him a big kiss.  My heart felt as if it was riped from my chest. In a instant the operating doors slamed shut.

The next 9 hours all I could do was sit and watch the clock.  My friends and family came to support me, but I didn’t feel like talking.  I walked back and forth to the waiting room checking the surgery updates on the screen.  Finally at 8:13 pm the doors opened,  I saw his crib.  I cried tears of joy!! My prayers were answered!!

Kaden at 8 months

Kaden 2 weeks after surgery

 As they wheeled him back to his room all I could see was his precious little face. The nurses surrounded him and prepared his room.  The surgeon met me in the waiting room and explained that the surgery was a success but he still wasn’t out of the woods just yet.  At that point, I knew he was alright.  I walked back to his room and saw him for the first time.  I lost my breathe.  His tiny body had tubes and wires coming out from just about everywhere.  He looked pitiful.  As the hours passed by his body began to swell.  He went from a tiny preemie to the size of a 1 year old in the matter of hours.  His skin was ice cold.  For it was the first time that his heart was beating at a normal pace.  

Over the next few days, medications were decreased or discontinued.  His body returned to a normal temperature and the swelling was going down.  The doctors were amazed with his improvements.  By the end of the week he was off the ventilator.  For the first time in 108 days I got to hold my son again.  I cried like a big baby!  As he looked up at me my heart melted.  I felt relieved.  

It was a challenge to get Kaden to eat again.  He had lost the ability to suck, swallow and breathe all at the same time.  It was as if he was a newborn taking a bottle for the first time.  He didn’t know what to do.  We worked with him every few hours and he eventually caught on.  We were finally able to see a weight gain in a few short days.  By the end of the month Kaden was up to 8 lbs.  He continued to improve and we were released from the hospital. The first night home, I was scared. Kaden was still on a feeding tube to supplement feeds and oxygen.  I layed awake watching him breathe.  

It was a challenge to get on a routine.  Kaden had his days and nights mixed up for several weeks.  He was ready to talk and play when I was ready for bed, but some how we managed to work it out and  finally get his sleep habits to change.  At Kaden’s 6 week post op check up he was taken off his feeding tube and oxygen.  His weight was holding steady at 8 lbs.  Finally 5 months after being admitted to the hospital we had a healthy baby. 

At 8 months old, Kaden is the joy of my life.  I have seen his first smile, his first laugh and the first time that he rolled over.   I love watching him discover new things, his smile lights up the room.  He is such a happy baby and is loved by so many people.  I am so grateful!

I have learned so much on this journey.  My outlook on life has completly changed.  It has made me a stronger, better person.  I will never take things for granted again.  I was never a very religious person, but after spending many hours praying I believe that my prayers were answered.   I had a tremendous amount of support from our family, friends and even strangers. What touched me the most was the friendships that I encountered.  Our local Down Syndrome Association was absolutly amazing.  They cooked meals and brought them to our home so our other children had meals when I was unable to be at home.  I couldn’t believe that complete strangers could be so caring and concerned for our family.  I was able to meet other children that had been through this situation, and their out come has been great.  I now have several new friends and I feel very blessed. 

I became my sons advocate when he couldn’t speak.  I had to protect him and his life.  I will always stand up for what I believe in.  I made the right choice to go ahead with surgery. I will  forever be  greatful to the doctors and nurses that took care of Kaden.  They are my heroes!

I want to say thank you to every one who took the time to write to me and given me some words of wisdom.  My little Kaden has fought a tough battle this last month.  He will be going into surgery tomorrow.  The doctors have said that he is as strong as ever right so they must take advantage of it and go ahead with the surgery.  Although I am scared to death.  I have been praying a lot and have had a lot of support that has been much needed.  My little Kaden is a fighter and he will continue to fight until he is healed.  I feel relieved that I am not the only one that has been through this.  Although I wouldn’t wish this on anyone, it takes A LOT  of stregnth but we will overcome this hurdle of our life and move on with a healthy little boy.  I am amazed by the outpouring kindness and support that we have received from our local Down Syndrome Association, from complete strangers that have offered us comfort and support and from our friends and family.  I wanted to say a big THANK YOU to you all!!!!  I will keep you posted on how surgery went.

Looking for any suggestions that may work to save my son.
He is 3 months old currently in ICU. He can not put on weight due to his av canel defect and is at risk for heart surgery due to his nutritional state. We currently have him on 27 cal formula with oil through a feeding tube directly to his intestine. He is batteling a infection from his central line or the vent we are not sure. My team of physicans don’t know what more to try to make him stronger. I met with one dr today that says he needs his heart repaired asap but the risks are to great that we might lose him. I can’t bear the thought of that, Now I am fighting for my son, I have to save him some how but I don’t know where to turn too? PLEASE If anyone can help me I would be forever greatful.

On 6/12/2009  I was being induced at 38 weeks.   I couldn’t sleep the night before, I knew the pain was coming and it frightened me so much that sleep was the farthest thing on my mind.  As the hours came and went, so much went through my mind.  I wanted to stop the clock. I wanted to keep him inside of me because I knew then he would be safe and healthy as long as he was kept inside.  I knew that once he was born, the doctors and nurses would take him away to the NICU. 

I arrived at the hospital at 6 and taken to a birthing room.  The nurse started the pitocin and my midwife broke my water. I knew from my previous labors that it would take about 5 hours.  This time I was wrong.  My contractions were coming every 2 min apart and yet the nurse told me that I wasnt dilating. I went through this for 7 hours.  Tears were rolling down my cheek as the pain wouldn’t give up, yet my nurse told me that I had to be at a 3-4 before I could get any pain meds.  I had enough, I knew that I was dialiated way beyond what I need to be to get some meds, but the nurse kept telling me that I wasn’t.  I demanded  for my midwife which showed up  about 5 min. after the nurse had checked me.  My midwife said that I was at a 6 and to get me an epiderial.  It took about 10 min but I was pain free, I immediatly felt him move down and was ready to push. 30 seconds later, my little Kaden was born.  He was blue and not crying so they took him from me to give him oxygen.  A few seconds later, I heard his cry for the first time and what a relief that was. I had a special team from the NICU in the delivery room with me because little Kaden has a heart defect, they were there to monitor him.  A few minutes passed when a neonate doctor came over to me to say, Im sorry to tell you that your baby has down syndrome.  My reply…Well I’m not sorry, I know he has ds and that doesn’t matter, he is MY son and he is a fighter.  I was appaulled.  What a cold way to tell a new mother, I’m glad I knew ahead of time or I would have gotten up and smacked her for that comment.

The NICU nurses took him down to there unit to monitor him, I was told that he was breathing on his own and doing great.  I had to wait a hour to go see him, but when I did see him for the first time, I cried.  They had iv’s and tubes everywhere.  It broke my heart to see him like that.  I was told that he was doing great, yet everything was done for precaution.  I was finally able to hold my little peanut for the first time.  He was only 5 lbs and looked so big next to these preemie babies that surrounded us.  I whispered in his ear that mommy was here and I would protect and love him forever.   He opened his eyes and looked at me.  The love and joy that I felt at that moment…words cannot describe.

Over the next 7 days, I was put through h***.  I was discharged early from the hospital, yet I didn’t want to leave my baby.  I held him and cried the first night I had to leave him.  I knew he needed me and yet I couldnt stay, that was heartbreaking.   When I arrived early the next morning I was startled to find a feeding tube inserted.   I was told that he had a feeding issue with formula, I had planned on breastfeeding but my milk was not in yet so they had to try the formula.  I had repeatedly told the doctors that my other children could not take formula, they had the same sign and symptoms that little Kaden was going through, yet no one listened to me, they just kept running more tests.  Only to find out that I was correct.  After giving him breast milk he was great and gaining weight. 

Over the next few days, I was overwhelmed by all the information that I was given.  I talked with so many different doctors and specialist and it seemed like no one was communicating together.  I had different opinions from different doctors and yet no one would give me a clean cut answer when Id ask.  I finally got to a breaking point and ran out of the room in tears.  All I wanted was to bring my son home.   Finally we did get to leave.  It has been two weeks since I brought him home and yet, I’m still waiting for a moment of peace.    Kaden is doing well and is breastfeeding.  We went to his first doctors appointment  and he is up to 6 lbs 11 oz.   I’m so excited for him, he is doing great!

I’d like to start off by saying “hello” to everyone.  This is my first experience on blogging and I am very eager to hear and learn from parents that have children with down syndrome. 

It’s funny how god listens in ways that you cannot imagine.  I was previously married and had two children and was content in my life, but then I realized that I was missing something.  We decided to try to have another baby.  Unfortunately, I miscarried three times.  Only later to find out that I had a blood disorder which played a role in my pregnancies.  It caused alot of strain on the marriage and I was very upset.  I decided that I was going to adopt.  I knew in my heart that the chances of adopting a healthy baby was out of the question since the waiting period was so long, so I looked into international adoption for a special needs child.  I wanted to adopt a child that had down syndrome.  I figured that having a nursing background, I could understand the needs and care that a child would require.  Unfortunately, my marriage ended before I could adopt.  I picked up the pieces of my life and decided to move on. 

 I met a wonderful man who was going through a divorce, and knew where I was coming from.  He had 4 children and I had 2.  We were one big family.  We had talked about having more children but never really decided if that was what we wanted until I realized that I was pregnant a few months later.  We were excited to add another child to the family.  I’m 35 and my new husband is 36.  We knew that due to my age and blood disorder, I would have to undergo alot of tests just to be able to carry a child to term. 

I remember the phone call, all too well, we were driving home when the nurse called to tell me that the tests showed that my baby would most likely have down syndrome.  I cried.  I came home and got on the internet and read everything I could so that when I went in to the doctors, I could have a level head on my shoulders.  But guess what?  My tears quickly went away and I accepted that god only gives us what we can handle and he knows what is best.  He listened to me before when I wanted to adopt and now, he gave me what I wanted, and I wouldn’t change that for the world.  I have the most beautiful newborn son that is 3 weeks old.  The love and devotion that I feel for my little Kaden is overwhelming.  I am so glad that god gave me him and made me his mother.   To be Continued>>>