Wednesday, May 23, 2007

Pictures and CDH Awareness

I'm feeling a bit sorry for myself and have been for the past few days. Thank you to my friend who pointed out that there was access to the cemetery even though the road was torn up. You know, the huge sign that said, "Cemetery access only" wasn't a clue for me I guess. I completely missed it but anyway, I went down the torn up no-road on Monday with the kids. It was Carson's first time "meeting" his older brother. Here's a picture of it:

Here's where the feeling sorry for myself part comes into play. This is the only way I'll ever have a picture of the 3 of my kids together. And it sucks. And it hurts. And it's just not right or fair. And it pisses me off sometimes.

I'm a computer addict, I fully admit it. I no longer have much time to be online; the past few years have cut down my time online a lot. But I belong to a couple of message boards that mean a lot to me. They have evolved as private spin-offs, I guess you could say, of larger sites for moms of babies born in August 2003. I can't say enough about the support, love and information that I receive from these women. They have been there throughout everything with Drew and have listened to me bitch and moan a lot. They've slapped me in the face with reality and have shown me so much kindness it astounds me.

But to get to my point. Drew's condition and all that he went through has done something GREAT. One of the women on my board is an OB nurse at a small hospital. What follows is what she posted (with some edits by me to protect privacy and posted with her permission).

"Ok as most of you know I am an OB nurse in a small rural hospital, we have about 30-50 births/month and any high risk stuff is sent off to (edit) another, larger city/hospital. every so often we will have a birth that we wish hadn't happened at our hospital, just because we don't deal with it all the time so our skills are a little rusty.

Thursday night I had a laboring mom, all night long her monitor reading looked great, every so often there would be a dip in the HR, but would come right back...looked good.

Baby G. was born (edit)around 6:30am, his/her apgar's were 8 & 10 which is good, but he/she did not "pink up".. So I gave him/her blow by O2, still didn't "pink up", when I listened to lung sounds he had great sounds on the RT, but NOTHING on the left, The RN who was working with thought he had a pnemothorax, and suggested that I "bagged" him. I looked down and noticed that he/she had a round chest, and a hollow looking belly, so I questioned myself about CDH, the other nurse said "NO" that would have been picked up on her U/S. but something in me just kept thinking that it was CDH. ( I read a lot about the disease after Drew was born, the nurse in me wanted to know all about it) So I called respirtory and we intubated him, and then got a chest X-ray...guess what? ....CDH!

OMG had I of bagged that baby I would have killed him/her!!!

Then I had to call (edit)another hospital, they no longer take CDH babies so I was trying to get a helicopter to transport to (edit)a large city...the weather was crappy, so that was a no go. I ended up calling (edit)another hospital's NICU transport team they came up in an ambulance, 1 hour ride, put in a UA line (basically an IV that goes into the belly button), stablized him/her then transported G. to (edit)the large city (5 hour ride) when they left the NICU team congratualed me on my descission making not to bag him. Mom was unable to go with baby, she was discharged the next day to make the trip.

I will NEVER as long as I live forget the cries that came from that woman, when I had to tell her what was going on, (then the Pedi came in@ 7:00, after all hell had broke loose, and told her that the baby had a VERY serious defect, and that he "probably would not live...she had a lot of heart...NOT) That poor woman was crying so hard you could hear her through 3 closed doors....I cried right along with her.

after the ambulance left I went to the changing room to get cleaned up..never had a chance after the delivery. pulled my long sleved gown off and there was my bracelet that I bought that Dawn made, about CDH awareness...( I wear that often at work, most will ask about it)

I trully believe Drew, helped me save that baby thursday morning!

Good news...when G. got to (edit)the large city, they called mom Friday, they up graded his/her chance of survival to 50/50, still not great I know...but better than we had thought when he/she left, He/She was having surgery today to patch the hole...I can't wait to go back to work to night to see if dad calls to up date me (he did yesterday).

Please keep baby G. in your prayers!


Kathy McC said...

The pictures are touching...I am so sorry that it has turned out this way. :-(

What a wonderful story about baby G! So heartwarming. Drew is smiling down on him/her, you and that fabulous nurse. Best wishes for all involved.

Catherine said...

Those pictures break my heart. But that story made me smile. Thank you for sharing them both. I know that Drew's story has touched me and educated me about CDH enough that I was able to help a friend when her baby girl was diagnosed (and passed). Had it not been for your words on this blog, I would have been clueless.

Julie said...

It is beautiful what Drew has done for everyone!

Shawn C said...

Love the photos, Jana!
Amazing story too! It's so heartwarming and heroic!

carole said...

I am just in absolute tears. I know that Drew had his hand in this...and because of him this baby has a chance it wouldn't have otherwise. Drew continues to touch all of our lives.

Emma H. said...

Thank you baby Drew for guiding Carol through that difficault delivery and diagnosis. Prayers to baby G and I hope we get an update soon.

Emma. xxx

phoebesmum said...

Hi, I have been following your blog for some time now & thought it was high time I "introduced" myself. Firstly let me say a heartfelt thankyou for being brave & sharing Baby Drews' story.And for showing how life does go on. I was born with CDH in 1974 & fortuntely survived. I will share more on this at my own blogsite in time.WOW! what a wonderful outcome for baby G, & truely what a blessing it was that baby Drew's guidance is evident...Im all the more grateful for my life now because I know just how lucky I was to make it & grow up with my brothers & sister. Im truely sorry for your loss :(