Thursday, September 25, 2008

Thanks to...

everyone for their kind words in the last couple of days, long chats and texts and emails and blogs and offers to fly over sooner and offers of dinner and weekend visits. I think I left a murky pool of tears on Dr Charlie's chiro therapy bench, but don't think he noticed.

Spoke to Dr Victoria Camarini, one of Reuben's neonatologists from the NICU and Dr Charlie Golden, Reuben's paediatrician. How very kind they were. I got a text saying I'll call you, Victoria and I was thinking it was Victoria Nelson. Not used to Drs I've never spoken to on the phone before texting me. But we'd met again at Children's the day before and she invited us to a Christmas cocktail party at her home in Beverly Hills so I was very touched by that and immediately thought to turn to her with our news. We chatted and she had a number of theories, but believes it's an intestinal dislocation, but Google doesn't help much on that front and nurse Kristina had been doing a lot of the Googling for me anyway.

I've developed a fear that the baby is in pain, how would we know? And then selfish thoughts of once again having the baby cut out and taken away after birth for intensive care or surgery, never rooming in together. As brutal as that. The assurance though that both Drs gave was that we've dealt with far worse. I know; the major organs were analysed in the anomaly scan many weeks again.

I have to listen to the Drs who reassure me that it's not because of my age, or own medical history or IVF or what I've done wrong. I think meeting the Nelsons helped me realise that CHARGE has nothing to do with age. And with CHARGE, I don't think CHARGE, as I'm sure so many of the parents don't, when I look at our child. I just think, wow, what an amazing little boy who stuns us with his beautiful face and loving eyes, gestures, communication and truly astounding memory. How can I teach you a sign one day and a week later, you look at me with studied eyes and retrieve it?


Candi said...

I am thinking about you today and hope everything goes well with your appointment. I am so glad though that at least you have such a great support system. Sorry things are so stressful right now, but I hope you get answers soon that ease your mind.

Eva Nichole said...

Hugs to you all, Katherine I have 3 children and I have only had one room with me after birth. I feel blessed everyday that I was given the children I was given. I know its always hard before they are born knowing something is wrong and not knowing the out come. My heart thoughts and prayers are with you all.
Crystal and Eva

skeybunny said...


Sending lots of hugs to you--I can only image how tough it is right now. I too hope that you get some good news with some future tests--even better than Reuben not having pneumonia :) You didn't say explicity, but it sounds like you maybe have polyhydramnios (excess amniotic fluid--the reason why your stomach is measuring to big)--I had that with Evan. Not fun.

Sarah, Jeremy, and Evan

PS I don't think you should delete the "not so happy" parts of the blog--that's what makes it real. If you only leave the happy ones, you aren't getting the whole story.

ellen charge said...

i hope everyone turns ou ok in the end sending mega hugs to all reu is amazing and so r u and the rest of the fam