Thursday, August 21, 2008

Reality Check

Simon is really sick.

I keep wanting to not stay with that information, in general. That's made even easier by the fact that for all intents and purposes he looks and acts like a normal baby. We had a team meeting with our cardiologist, social worker, and the two clinical nurse specialists to discuss his weight gain or lack thereof and to touch base about short term and long term goals.

The short term goal is that he needs to gain at least 15-30 grams a day and this week we've averaged 10. So to accomplish more weight gain, we need to seriously bump up his calories and the only way to do that without stressing him too much is formula fortifier. Laura's really concerned that this will mean the end of breast feeding because the fortifier keeps him feeling really full but they're keeping him on the every three hour schedule so he might not ever really get hungry. We're having to let go of what we want ideally in favor of what's medically necessary for him to have a better chance to heal.

We're definitely not going home next week. Dr Rosenfeld explained whywe might have gotten that message from other doctors. For other cardiac patients the criteria for going home is usually are they gaining weight and not much else. Simon's not dealing with a structural defect or post op recovery, he's dealing with weak, sick muscle and that's different and more complicated than a surgical recovery where the muscle is basically healthy but injured in some way. Ultimately Dr. Rosenfeld is the final say in whether Simon stays or goes, which is good to know, b/c there are so many people in the mix right now. It was a good meeting with a lot of information, some pieces harder to hear than others.

It was really challenging to go immediately from this team meeting about Simon not really being much better, directly into a work conference call that I was already late to. I feel like I should almost just go back to work full time because who knows how long this will go on and at the same time how can I possibly leave Laura and Simon in the hospital for that many hours and not be with them. This whole thing just feels insane. Methinks I should play the lottery.

There's been discussion about Simon getting a more permanent IV line which would involve a surgical procedure (since they can't seem to get a PICC line in despite at least four attempts). It's both terrifying and a little bit of a relief to think of that type of IV. He'd have it for up to 6 months and they'd be able to draw labs and give him medication should he need it. We'll find out in the next day or two. Kind of a rough day.

A sweet note today- Our friends Angie and Elizabeth who have two small boys (four months apart!) brought us homemade food. (You can read their article in the latest Curve magazine as to why it's such a big deal that they made us homemade lasagna complete with noodles that they made themselves).

Laura says: I don't really know what to write. I'm a little tapped out right now. The visits and gifts are amazing.
My heart doesn't know what to do with the sweetness of time with Simon where he presents somewhat normally, nuzzles into my neck, takes better and better to nursing, AND still is a very sick boy on the inside who's heart is not working any where near well enough.
That's all I got right now.

p.s. just had an experience that made me laugh so hard I cried. I was dictating this blog post to Laura while I held Simon and when I went to re-read it, I realized she had types "all intents and purposes" as "all intensive purposes". We had a back and forth for a few minutes before she conceeded that, in fact, the phrase might really be "all intents and purposes". It was one of those classic things like learning as an adult that unicorns, in fact, do not exist (there is a great "This American Life" on NPR about this type of thing that is hi-larious).


Anonymous said...

I love you I love you I love you.
Frank and Maya love you too.
Sending you light and holding you.

Elizabeth said...

It was an honor to help in any small way, and to turn our thoughts and prayers into lasagna. You three are all amazing and wonderful!

Carolyn said...

Girls, I'm so sorry. I wish I could be funny or flippant or lighthearted tonight, but I just can't simply because I feel that weight on your shoulders more today than ever. I'll just say once more how sorry I am that you are experiencing this trying time. I'm amazed at how well you are handling it, and I really thank you for being so candid with the world in your blog. I know it helps you, too, but it really helps me to read it every night. Helps me to feel more connected. I think of you both and Simon all day long. Even though I know it's painful to confront, I'm grateful for Dr. R's frankness with you about Simon's condition. It proves he's really doing all he can. And, proves he can be trusted.

I love you all.

Fresh Ground Knits said...

I think I realized that it was for all "intents and purposes" sometime in grad school--so you're not too far behind the curve J!

Simon is so lucky to have you two as his parents. You have so much strength, love, support, and light. Sending so much love!

Ramprasad said...

Jaime and Laura,

Vidhya and I are extremely sorry to hear about Simon's health condition. We pray that he returns to his bubbly little self very soon. We also want to thank you for keeping us informed of his health through this blog. We try to catch up ever so often and enjoy watching photographs of all of you.

We may not be in touch as often as we'd like and also not there in person during this difficult time for you but we want you to know that we love you and are constantly praying for Simon's speedy recovery.


Polly said...

Hey ladies. I know it's hard to let go and give formula and to know when to advocate about it. (I only did it once and wanted to shoot the nurses and lactation person.) But the bond you are getting to form with Simon in the hospital will go long beyond breast feeding. My sister-in-law just had to give it up because of a yeast infection in her breast that she described as 1000 red ants with razor blades. You are fattening that boy up with your love and do what ever you can to bring him home to the warmth of you and your home. We love you. The Zobel-Williams family