Friday, February 12, 2010

taking steps forward but looking back

I have been in reflection these past few weeks and a few of you that are new to our story have asked how this all happened. So I got to thinking that I should post a more detailed history about our Sweet Baby James! Warning this will get LONG :-) but hopefully it will be all you need to know and a few pictures to help along the way.

In the beginning....Oh wait! That is a different story sorry ;-) Josh and I have always wanted children and so pretty much right from the get go we wanted to start a family. We didnt worry too much about preventing because we were ok for a baby whenever but early in our married lives we got a health scare about me. I had to go for some tests and luckily everything was caught early and I ended up being just fine. We were told that if we wanted children it would be a good idea to go ahead and start trying. Message heard and we were ready!

After about a year we new that we needed some help so we got an appointment with a Fertility Doctor and we started on the journey of infertility. We did MANY test, shot, procedure and sadly we lost a few of our sweet babies along the way. But we knew that God had a plan for us and that we were meant to me called Mommy and Daddy. So we kept trying. Dec 2006 rolls around and we are in the fertility doctors office for our 3rd IUI. I will never forget watching the procedure and praying that THIS would be it! This would be the time that would work and we would get to bring a baby home! Sadly this wasnt in God's plan for us. Josh and I were pretty devastated and my body needed a break from all the needles and hormones that were being pumped into my body. So we told the Dr. that we wanted to use our 6 month break and then we would be ready for the next step of IVF .
Jan. 1st of 07 we embarked on a new quest for health and connection with what we truly wanted out of life. Of course a baby was one of those "wants" but so was a healthy and happy marriage. Going through infertility is very trying on a marriage and I will admit that it wasnt very pretty at times. The stress had taken and obvious toll on us and we need to get back to what we loved about each other. So we started hiking several times a week and up in those mountains we not only talked about our marriage but we talked about being ok without children. We dove into some real dark waters and planned out our lives without kids and being a party of 2. We needed to know that we would be ok if that was God's plan for us. And surprisingly we were. I learned that my husband loves me so much and that I love him just as deep that we will make it and be happy! We walked and talked and played! We found our JOY in those mountains.

So here comes March and it is our first real month off all medications and shots for fertility. I am not really even thinking about being pregnant because for 3 years I needed help. I just assumed these 6 months would be the same but when my period didnt show I thought that was strange. I called the Dr. Office and we all assumed that it was due to my PCOS which was the cause of my infertility. That night I found a little dollar store pregnancy test in my bathroom and I thought...why Not! And too my utter shock I saw 2 lines!!! I showed Josh and he didnt see them so we waited for the morning and took another one at 6am. 2 Lines again!!!! I fell to the floor laughing and crying and we both just were in shock. I drove STRAIGHT to my mother house ( 1/2 mile away) and about broke the door in knocking. I think I scared her to death. We cried and were so excited

We called the Dr. that morning and they had us come in for blood work. The initial blood work was not good. Things looked like this pregnancy was not going to make it but I had a different feeling about this one. I never really allowed myself to be sad over those number instead I just prayed. And slowly the numbers rose and we were out of the woods! OK flash through a WONDERFUL and normal pregnancy ( barring a little scare at 7 weeks!) We are at 32 weeks now!

Thing were going great. We had our Maternity pictures done on Tuesday and I remember when we got home thinking I might have peed on myself ( sorry TMI) but I was pregnancy so I didnt give it much thought. We had our regular OB appt that Friday and during the appt just before they were going to let me go I mentioned that James wasnt really moving like he had been. So my Dr decided to do an ultrasound and stress test. My levels were low but not yet to the point where they were cause for concern. ( so we thought) They sent me home on strict bed rest for the weekend and to come back first thing Monday and to be prepared to go to the hospital. That weekend I freaked out a little, but held it together enough for my mom to go and get some preemie clothes and diapers. There were a few scares that almost sent me to the hospital because James would stop moving and it would take a little bit to wake him. ( If I had it to do over I would GO in a heartbeat )

Monday Josh and I went in with our bags packed. James failed the stress test and they did the ultrasound but at first look the levels were up! Josh and I just didnt think that was right and I MADE them re-ultrasound me. Maybe I should say forced LOL! And come to find out the tech was measuring my bladder because there was NO fluid for James in there! We were sent directly to the Labor and Delivery floor. They needed to get antibiotics in me since my water had obviously been broken for several days to prevent further infection. During this time they let me labor until James started to show signs of distress. It was a bit of a blur and whirlwind of nurses and doctors and paperwork to sign. But they had be ready to be delivered in 17 min! It was crazy

Then after what was the scariest 17 mins of my LIFE , I hear the most amazing sound. It sounded a little like a frog croaking but it was James. He was alive and making A noise, any noise was music to my ears. He wasnt breathing well and in the first 10 mins of his life he actually stopped breathing and had to be helped. He was 4lbs 8oz and the smallest little person I had ever laid eyes on. But he was beautiful and ALIVE!

I of course had to stay and be sewed back up and watching Josh carry our struggling baby out the door was heartbreaking to me and yet beautiful. It felt like they were carrying half of my heart out the door! And yes there IS a baby in this picture in those blankets...some where!

I went to recovery and Josh stayed with our son. They worked on him and tried to keep from intubating him but his little lungs were just too young. He needed help and medication to make his lungs inflate. So he was placed on the ventilator. After recovery the rolled my bed to his isolette in the NICU and seeing him with so many tubes and machines made me sick to my stomach. I broke down but was so happy to see him at the same time.

James had several ups and downs in the NICU. I guess I just thought he would need a little help int he beginning and then he could go home with us. I was wrong

We had to wait 30 days to bring our baby home. In those 30 days James had to meet several milestones that those of you that have has preemies know all too well! Off the vent was the biggie and at 7 days old he did that!
After 7 days we FINALLY got to hold James. It was heaven :-) He still had many thing he had to do but I got to feel him in my arms and it was what I had prayed for for so long. James had lots of issues with feeding and keeping his body temp but Oct 31st we said goodbye to the NICU.
We were told that he would be about 2 months delayed because of his early birth but they expected him to be perfectly normal. I even brought up CP to his primary nurse and she laughed and me for it. She said James was perfect and in fact really strong ( little did we know that was the tone already) So we went home and LOVED on our new baby. He was so tiny that the preemie clothes didnt fit until he was 3 months old. He had lost down to 3 lbs but when we brought him him he was just under 4lbs.
As the months started to roll along we did notice that he was behind. We expected that. But at 6 months he started shaking in a strange way. We were afraid he was have seizures but and after the EEG came back normal they told us it was Clonus. Which I now know is a clear sign of spatiscity in Cerebral Palsy. But no doctor with tell you that at 6 months!!!! I had to research on my own and force the doctors to listen to me. I knew there was something more going on. At 9 months James had surgery on his eyes because they were crossing. AGAIN another warning sign for CP and no one told us! It wasnt until I started putting the puzzle pieces together that we started to suspect CP. It was a physical therapist that was doing an evaluation that said the words for the first time. And still I was being told to wait!
I dont wait that well and I am glad that I didnt because James would not have gotten the help he needed so early if I didnt go kicking and screaming to specialist for them to look at my son. There was even one neurologist that tried to use different terms on me to avoid saying Cerebral Palsy! I quickly told her that I was aware of what see was saying and that it doesnt help to try and handle me with kid gloves. I need to know so I can get my son help. She also refused to give me the MRI that would confirm the CP diagnosis saying it is too early. But I just went over her head and go another doctor to prescribe the MRI and we got our official diagnosis.
Scary words to hear and then to actually SEE your son "damaged" brain on a screen will make you want to vomit. But me falling apart doesn't help James. What DOES help James is 7 being his advocate. And working my b-u-t-t off to do everything I can for him. Some ask if I am pushing him too hard, and all I have to say to that is that this is a snapshot in James' life. His brain had the ability to heal and I trust that my God still works miracles. I want to give James ALL the tools I can so that when his miracle happens, be it surgery or healing, he is ready! I don't want him to be grown and wonder what his life "could' have been like if we had gotten him more help.
So that is our story....long but now you know!!



Even though I've heard this story before, reading it hear brought tears to my eyes. James is so blessed to have such a strong Mommy. As I've said before, your attitude inspires me.


I'm glad you shared this here. I think it is a great thing for you to be so proactive for James. I know that you being so will help him and he'll be thankful!

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