Sunday, August 30, 2009

Will the pain ever go away??

On Saturday night I was going to bed, Kristófer was sleeping in our bed and I laid there next to him and I was watching him sleep. He was so peaceful and adorable and I thought to myself how is it possible to love someone so much!!…..but then I started thinking about his birth and everything that has been going on since he was born. The thought about his birth and when I got him in my arms the feelings and the pain…..I was crying and I could not stop crying, it hurts so much inside, my hart was hurting. Im wondering if this pain will ever go away….will it always hurt so much inside?? Even though you love your child and you have gone forward with life and your baby as it is???

Sunday, August 23, 2009

Kristofer´s Motorcycle

Thank you followers for the comments you guys posted on my fiancé´s latest blog.

I want to share a litle story about Kristofer´s babtizm/christining gift.....

In Iceland most newborns are baptized in about 2-3 months after birth. When we found out about Kristofers problem with his Aorta we and the doctors were not sure if he would be with us very long, or if that he needed a surgery....
My father was like a rock at the hospital when Kristofer was born.

He had already seen him before we new he had DS and left home to download the pictures he took of him on is PC. When he came back to the hospital after i had called him, him and the doctor took Kristofer to the NICU.

My dad advised me that it would be good for us to babtize Kristofer right away...just in case anything would happen, so Kristofer got baptized by my friends father which is a minister in our church on a saturday afternoon at he NICU.

The gift...

My father and i share a passion of motorcycle and cars. Well its my fathers fault that i have the same passion ;) but thats ok i love it.

When my dad was young he bought his first motorcycle in 1974. He was 16 then and the motorcyle was a 1974 HONDA XL 350.

Few years ago my dad was searching for the same type of a bike as a winter restoration project. And one day he did...he was on most of the time and stumbled across the same type of motorcycle he had when he was young. That bike was in Ohio....and we live in Iceland. But that was ok since he was going to the U.S. anyway to buy a new SUV for my mom.

He picked up the bike and shipped it to Iceland.
When my father found out he was going to be a grandfather he was so he made the decision to hurry up and restore the old Honda into a decent shape so he could give it to his first grandchild as a biptizim gift.

Kristofer Karl shares his middle name with his grandfather and my litle brother Jonas Karl. They all own motorcycles....but not me ;)

Here are a few pictures...

My father with the brand new bike back in 1974

Me and Kristofer on his 5 month birthday

The Karl´s together on the Honda,

Hopefully Kristofer will be able to drive his motorcycle one day....


Wednesday, August 19, 2009

The pregnancy and the big surprise!

When we found out that I was pregnant we wore very happy as this was our first child, the decision about having a child was hard….you never know when it’s the right time, if you should wait for few more months or years. The pregnancy went really well and I was with a very good health the whole time. The time didn’t go to fast as we was very excited about having our first child, everything had to be ready and perfect for our little baby boy.

After a lot of thought about If we should have the early ultrasound or not at 12 weeks we decided that we wanted to have that done and check if everything was ok with the baby. Most people that I know have had that test done and you just get used to the idea that this is something that is the part of the program, so going to that screening without even the thought is very common with couples here in Iceland. At the screening she was measuring the neck of the baby and it took her a very long time….she said something about that she felt the neck was kind of thick, thicker then usually and that we have to have a blood test done. She talked about some numbers that we did not understand at the time that my probability of having a down syndrome child would be high as I was very young only 26 years old if she only took my age and the thickness of the neck. I was shocked and could not believe this, as I went to this screening just because and never did I think about that something would be wrong with my baby and the news was hard to take. I went to the blood test and went home cause I had to wait for at last 2 days to get the results. I went home and called my mum, we cried and talked about the possibilities if something was wrong with my child. When the blood results came back I had already made up my mind that I would not be having this child if the likelihood of down syndrome would come out high. 2 days later I had a phone call from the nurse telling me that the blood results were real good and that the likelihood of having a baby with downs are not high at all as they were 1/723 and that I would not have to worry about anything at all as I was young and healthy. At that time I did not understand this probability formula that calculates these likelihoods and I was just happy to hear that my baby was fine and I didn’t have to think about something being wrong.
The pregnancy went on and I was feeling good and so excited about the new family member…..

I was due on February 26th, and on February 26th at 7am I told my fiancé that our baby was coming…..I was very excited and I told him that this is as perfect as it can be that he is coming on the exact date and all!! 26 hours later a baby boy was born, a baby that was not expected and not so exciting. At first we did not realize what it was that was wrong or if anything was wrong at all….but I told my mother that was there that he was very strange…. Few ours later after we went into our private room at the hospital the doctor came in the door, I was nursing Kristófer and we had just finish saying how proud and happy we was…..the doctor started looking at him and doing all kinds of test on his body reactions and muscles, after few minutes of silence he asked us if we though he was strange, strange I though??? No I don’t think he is strange at all…..not anymore at least, I just though that this little baby was tired after all the hard work of getting into this world and he would just have to rest. We told the doctor no, and then I asked him if he though he was strange? He told us yes…..and that he thought he looked like baby’s with down syndrome. Down syndrome I say?? And repeat myself few times……he told us yes and that he would have to take a blood test to confirm it, and there he was out the door.
I sat in the room and looked at the baby and thought that I could never keep this baby!! He had down syndrome and that was not what I had planed for my baby, and something like that would/could never happen to us!! We sat in silence and started to cry….our lives were ruined !!

We called our parents who came right away to the hospital…nobody spoke a word and everyone thinking what to say or think. We cried…..and then I said that I could not keep this baby, I did not want to hold him or touch him and I just wanted to tell the doctor to take this baby and I was going home and in a while I would just have another one. Then I thought I would have it adopted….but did anyone want to adopted a baby like that?? The doctor came in again and told us that he had to take the baby to check his heart because 50% of baby’s with downs have a heart failure and need a surgery. We went with the doctor to check his heart and he was talking to an intern what was happening and that he would explain to us later, thoughts like “I hope he is that sick that he will not make it” came to my mind and looked at my baby that had only been in this world for few ours. I thought it would be best for all of us if he would just not make it, because life with down syndrome is no life at all! The doctor told us that he needed to stay in the NICU so they could keep an eye on him, he also needed an extra oxygen, and then he explained to us what he saw in the ultrasound, Kristófers patent ductus arteriosus was still open and his aorta was very tight so the bloodstream in the body had a difficult time to get to all the extremities. I did not know what that meant, I just thought that he was very sick.

When Kristófer stayed at the NICU I hardly wanted to touch him or take care of him, I just wanted his father to do everything that needed to be done with him. We felt like he was not our baby but we felt sorry for him so we had to take care of him. He was so little and weak and he just laid there in his glass box, with parents who did not want to keep him at all and that thought it would be best for everyone that he would not make it!!

After 5 days at the NICU the doctor told us that tomorrow we might just take him home, he was doing so well that they trusted him to go home. I thought the doctor was crazy, I didn’t want to take him home at all, what was I suppose to do with him at home?? All alone?? No doctors or anything…..I didn’t trust my self to take him home and I did not want to, I was also very scared of being alone with him. When we came home it was all very strange, no glass box and no tubes or monitors peeping at you all the time. The breastfeeding was hard but I thought to myself that I was not going to give up. I was very numb and didn’t know what I felt……but time went on and so did my feelings towards Kristófer, I started to feel that I did care about him and that I was so happy he did not need a hart surgery. I thought I could never love him, but he was proving me wrong time by time.
Before I was mad at Kristófer not being what I was waiting for and I was grieving the healthy baby I did not get. When I was pregnant my mum came to my house to decorate our little boys room, all the cloths were ready in the drawers. I remember telling my mum when Kristófer was born "We have everything ready at home and now there is no healthy baby" and my mother told me that he also needed a room and a bed to sleep in and cloths just like every other baby. She was right he needed everything just as a healthy baby....and he is healthy....he just happens to have something little extra.....and he also gets a little extra love!!

Monday, August 17, 2009

Swimming and Diving!!

Last Saturday we just finished our last lesson in infant swimming workshop and because Kristófer loves the water and swimming so much we have decided to continue to the next advanced workshop. Here is a picture that was taking of Kristófer diving, only 5 months old :)

And after swimming he gets real hungry......

and sleeps like a baby!

I recommend infant swimming to all parents, especially if you have a baby with special needs. I see a big difference since we started going to these classes on Kristófers development. The stimulation they get from the water is really good for them and it also makes movements easier for them and of course the parents enjoy it a lot!

Tuesday, August 11, 2009

Hi i´m Kristofer´s father just wanted to check in my first post.

Kristofer has very good work ethic he did three workouts today. One easy one with his mum before his daily powernap at noon, second one with his physical therapist at 3 pm. And then infant swimming lessons at 6 pm with me and his mum.

He was preety exhausted after he got dressed and fell asleep right away.

I´ve played basketball most of my life and i´ve always been extremly devoted to my workouts, i can see that in Kristofer´s character right away. Plus he loves compliments...i think he gets that from me also.

Well just a few lines this time...more to come later.


Monday, August 10, 2009

New Bloggers

Hi, we are Kristinn and Thelma from Iceland and we just had our first baby Kristófer Karl who is turning 6 months on the 27th of august. He has something extra....extra 21st chromosome (aka down syndrome). He sure has change our life completely.

The other day when I was searching the internet I found the page of Down syndrome new mama, I was looking at the pages and I start chatting with one of the mom on there that just started a blogg, so we have decided to join this blogg and tell our story here and hopefully we can share some experience on here as others do.

So this is a start.....more to come :)