March for Babies 2010

Yesterday we did our yearly March For Babies walk... It was amazing. more than 300 people came and walked as teams that had raised money for the March of Dimes.

If you gave or walked Thank You's go out to all. This is an amazing organization which 93% of every dollar of funds raised go to research

Here is a video of us getting to the finish line.

Which totally gave me a flashback of this. Thanks Andrew

The kids were okay during the whole event until after we came back. Then they were tired and needed naps and behavior reflected that. Screaming tantrums and melt downs.
When we got home we put everyone in bed without too much of a fight and the slept a solid two and a half hours.
Be very blessed

What's up?

This week in our family:
 We found out that Daniel had an ear infection and a tummy bug. When we were at the pediatrician's after getting a antibiotic shot we found out just how many pediatricians and nurses were there. Daniel's legs got a little swollen and after some ice and time discovered he probably had a reaction either to the bandaid itself or the adhesive in the bandaid. Mommy has the same problem with the adhesives but not to the degree he had it.
He hates the antibiotic.. The tummy bug passed and he became much happier.

Jonathan had a neurologist appointment to check his cafe au lait spots. We just wanted to see if there is something lurking in the future.
He needs some blood work so he can get an MRI at the Children's Hospital (as they like to sedate these kids so it's not traumatic).
 We will be going for genetic counseling to check for some stuff related to something called NF.(Aug)
We just would like to know again if there is something down the line we need to be watching for.
There was no talk of anything else thank God.

Right now I keep being reminded about all the miracles that keep happening. Yesterday a couple of people I know had their 3rd son. I don't know exact details but hopefully when the baby came out he was screaming.
I remember when Daniel came out when he was born he was screaming. Best sound in our entire life and he at times continues to scream. At the  time we were expecting him to be in respiratory distress. we had gotten less than desirable results during the amniocentesis. Our hearts sank and we prepared for a journey through the nicu. It was awful and we were terrified.
After getting betamethasone over two days and on the day Daniel was born we spoke to neonatal staff and the OR staff and they wanted his birth to be amazing and a source of great memories. Andrew was able to wear regular scrubs instead of the plastic yellow gown we spent so much  time sweating wearing with Jonathan.
The reason I say this is my friends are currently in the nicu and by everything I can read in their status updates it sounded like Henry is under observation. One hour is too long to be in the Nicu and I pray that he can be given the all clear and be reunited with his mommy and Daddy and his 2 brothers.
I hope they can also use the opportunity being that they are pastors to bring the message of love into the Nicu..
Okay enough of me...I must tell you after Jonathan crashed in the Nicu (and was put on Nitric)I decided to start praying for the other families. I started  cheering more when babies improved and they started cheering when we got great news.There was not a lot of privacy but we all respected each other's space. we saw big things like babies only spending a couple days on ECMO(last ditch thing) and come out strong and got to go home like a normal baby.

Okay be blessed and I will get pics up from  the Walk this week. If you can't walk with us, Give. As my hero Naked Lizard (Toni) say... Miracles happen...They just take time. :)

Shirt and our walk

make custom gifts at Zazzle

There is only Two weeks left and then we walk.
Walk day is an exciting day for us. Along with the money we raise, this is a day we celebrate the fact that Jonathan would not be here if it weren't for The research and the medicine that the march of dimes funded and developed... Secondly without having Jonathan, we wouldn't have had the opportunity to get special care while pregnant with Daniel and have an amniocentesis and betamethasone ;which saved us a lot of heartache and time in the Nicu... Jonathan became Daniel's hero the day Daniel was born.
There is still enough time if you want to walk with us... Just go click on my March of Dimes Widget. There are 2 buttons : Give or Donate or Walk With me.
We would LOVE to see all of you give or even better Join me in the walking part. You don't have to walk the entire thing.

I posted a long hidden video I just discovered on our team page. It was of us with Jonathan when he was on the oscillator at the new hospital. He had just been moved.

Be blessed and Help me get the bar to move by giving...
If you decide to give you can also leave a message that will show up.
Please help us Reach our Goal... These Babies are worth it... Trust me

I'm not Shopping

Just a thought...
Ever visit a church or just join a mommies group or a life group and totally feel like you took someone else's seat?
This really did happen.
Recently we tried to change churches and that is how I felt. I really didn't want to feel that way. Even though I knew a ton of people there. It was just like playing 6 degrees of Kevin Bacon but with Andrew and Trina.
Honestly it was probably more of me and my stuff than anyone else. I was hoping being around people I have known for a long time would help lessen anxiety I've been dealing with for a couple of years. Turns out that isn't really the case and it's the same whether I am known by a lot of people or totally invisible (only a few know us).
We will try this again when Andrew's week end part time Pizza throwing changes a little bit. Logistical issues are our main issue.
We felt like the grace or "want to" had warn off or left where we were. We prayed about it and so we tried changing churches. No we are NOT church shopping at all. We were feeling it was time to go there but apparently it's a timing issue. Jonathan was happy (good sign but not a good barometer of how great a place it is).
It wasn't how much love we felt from a lot of people that were there or whether or not the pastor came by and shook hands with us. We love him by the way. It wasn't the greeters or the ushers or the kids folks. It was me. I felt like although they knew me... things in my life had changed and I have no way of explaining that to anyone.
I was back to feeling like my heart was shattered again. Like I have to explain what happened that caused me and my family heartache and pain, they all knew.

 I found myself putting up walls trying to insulate myself from what I felt was an inevitable betrayal. Funny how I felt that way when most of the core group had been with us during our pregnancy with Jonathan and through the nicu stay... But I will say this again...It's me, Not you. We will try this again as it's more of a when than an if.
I guess it is a forgiveness issue and the hurt that came from it.(not to mention some really nasty memories from the past).
We went back to Forest Hill on Sundays, and although we have pulled Daniel out of the nursery indefinitely. Feeling like we were being burnt to a crisp every 3 weeks(working as a volunteer). I was exhausted meanwhile I was working though some crazy emotional stuff. Not a great mix. So we stepped down... we are still able  to worship in a family viewing room.
I feel like some of the grace was renewed and I went back to the life group I was enjoying, I love being stretched and these ladies and I have learned so much about what we believe about praying and who God the Three-in-one is...
The above happened too for a while and I had panic attacks on the way there for a few weeks until I started to KNOW these people. That in itself was unbelievable how healing that was.
As I write this I am suffering from a sinus infection that sparred from my spring allergies and yes folks The trees are a blooming big time due to all the rain we had.
As I write this I am looking at a stack of papers I need to fill out before Jonathan's neurology appt. on the 14th of Apr, at this point I need some help filling this out or I feel I am not doing Jonathan a good thing by taking him... May of these are about his behavior so I might email his teacher and ask what she's seen.
I am a great advocate for him. We are going to go get his spots on his torso looked at they are called caffe au lait spots and look as though someone spilled coffee on him.
I won't be giving you a link to info like normal and I ask you not to send me any info on this as I need to stay in a calm place to appropriately be Jonathan's advocate.
I only tend to post conditions after the fact we know something. I like to not go looking for trouble and search the internet for this. It makes me fret full. I have several friends I've made a pact with to not do this or they kick my tail.
Not what I want or need to feel walking into the unknown... I just hope God steps in and does something special for Jonathan.

I have  the wonderful memories of  our first walk (March of Dimes) with Jonathan(while I was preggo with Daniel) and how special it was  to be around other special kids like him who fought hard to be here.. I especially enjoyed being able to pray for and record them releasing a balloon in honor of their friend's baby born at 25 weeks and fighting.
It was great we released balloons in honor of Sarah's Daughter Kenadie and Shayli (naked lizard). I always shed tears and always come away feeling a lot better. I cannot wait for this year as maybe we tell our story, and how some of you helped me finally take some advice to go see a perinatologist..
That is so awesome.
anyways be Blessed