Gwyneth Rose is, in the words of one of her nurses, "Eating and pooping like a champ." She'll receive just a few drops of breast milk every 6 hours for about 5 days (she's on day 3, I think), and then they'll reassess and hopefully begin giving her a little more. She's on the lowest settings on the vent, and they should be moving her to the CPAP soon.
Also, she is gaining weight and is actually now above her birth weight for the first time! She's about 1lb 6.5oz. Yeah!!!
Tricia has been having some up and down days since moving out of the ICU. Her docs will not allow her to go see Gwyneth (it's been since last Saturday night), which is something she's having a hard time with, but something that she's trying to understand. She is also still very weak and has not been able to do as much PT as she was doing last weekend, which means she hasn't spent as much time outside of her room as she'd like.
She really needs to gain some weight...weight and strength will be two things she'll need going into transplant surgery that will help her during post-surgery rehabilitation. (I'll post a lot more about the transplant stuff tomorrow)
Tricia is spending most of her time focusing on breathing and on physical therapy. We have lots of books and magazines and games and tv to keep her busy, but she hasn't messed with much of it...it's amazing to me how much time and effort she is putting into getting as healthy as she can.
I've posted a lot in the past few days, an I'll probably be posting a lot in the next few days...the transplant activation could be upon us shortly, and there is a lot that I've been meaning to say that I want to get in before she's activated.
I want you to know that I've read every comment that has been written on this blog (over 9000 of them). Just an observation...I find amusing the comments that start our with, "I'm speechless/I have nothing left to say" and then go on to say more (usually lots more). I'm not being critical...I seriously think that's funny.
Please, know that, while I appreciate all of the encouraging emails that are coming our way, I DO NOT open Forwards...they're just too dangerous on several different levels. I've received several forwards from our blog readers, and I'm sure most of them are great emails, but I just send them to the trash. I'm sorry.
Time for some Q&A:
> While Gwyneth is just now getting some serious breast milk, she has been "feeding" via liquid IV, full of all of the nutrients, etc. that her little body needs. This is the big reason why she has stayed healthy without much growth over her first three weeks. With the breast milk, she is being fed via a feeding tube down her throat.
> You can buy all the baby clothes you want, but we'd prefer that you only send us something if you've taken the time to send me an email to get our address, and even then, I may tell you that we have all that we need for the time being.
> We're working on getting a PayPal account up and running for Tricia's Trust Fund (as several people have inquired about this).
> Feel free to link us and/or post about us on your blog...we appreciate all the help we can get! But, if you're going to mention our story in any kind of publication, please make sure that you get our expressed permission first.
> I'm not sure if grandparents can do the Kangaroo Care in the NICU at this point. Tricia remains on "contact isolation", which means she can't have any physical contact with Gwyneth...this will probably last until after the transplant surgery. I have promised Tricia that nobody else but me will have this opportunity until she is able to join me...it was bad enough that she was about the last person on earth to know of and see pictures of her own baby. :)
> We are planning on using some simple sign language to teach Gwyneth to communicate with us when she is young (and before she can speak). You can read more about this technique Here.
> Tricia has had a feeding tube for about a year. It has helped tremendously with her weight issues (CF patients are usually very thin), and she would recommend it to any CF patient who is struggling with their weight.
> Somebody commented, "My sympathies at the loss of your wife and daughter." Just to make sure, they're not dead. :)
> There are a few different types of ways to test for CF, and there are many different mutations of the gene among carriers which can require multiple screenings to detect. Gwyneth's only test so far has been a blood test that is not completely reliable. The standard for testing among infants is the Sweat Test, and Gwyneth is not sweating yet. I was screened via a blood lab before we were married to discover if I am a carrier of the CF gene, which I'm not, which is why we are not concerned about Gwyneth's possible status as a CFer.
> They say that you can set a goal to have your preemie out of the NICU sometime around their original (40 week) due date. If the preemie does extremely well, their time in the NICU can be cut short, and if there are complications, you can expect a longer stay.
Finally, here are a few thoughts that ran through my head as I was holding Gwyneth last night:
> My heartbeat is the first she's heard in over three weeks...the first since she last heard her mother's...
> Gwyneth is much smaller than my pug (a toy breed) was when we first got her... Below is a picture of me holding Meka the pug when we brought her home when she was just 8 weeks old...above a picture of me holding Gwyneth when she was just over 27 weeks old (gestational). I am in no way comparing my daughter with a dog...just trying to show you exactly how small Gwyneth really is.
> Although I would have preferred to share this moment with Tricia, my second choice was my mom...as I held my baby for the first time, she told me about my birth almost 27 years ago. That was special. Thanks, mom!
> Why God is blessing me in this way is beyond my comprehension.