P. Sunshine

P. Sunshine
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Tuesday, May 24, 2005

braggity brag brag

Sorry, but I really do need to gloat for a moment, if I may....
We went to Hayden's first CF clinic appointment today, and his doctor said she had never seen a CF baby look so healthy and on track so soon after being hospitalized (cheesy grin)!
He is now 12 lbs, and the dietician is so excited to see him back on the charts.

Tuesday, May 17, 2005

and...he's back!

Hurrah! After exactly one month, my little miracle boy has arrived home. We had a pleasant night together as a family in our dirty, messy, neglected house (but, hey! The love was oozing out of all the cracks).
Hayden seemed quite comfy in his crib, which he had never slept in until last night. It seems the hospital stay cured my worry about how to transition him from the "family bed" to the crib at 3 months.
I must admit, I am going to miss the hospital. I loved the staff there, and some of them even thought I worked there, we had been around so much! (not to mention the free food that I received as a "nursing" mother - ha!) I also feel guilty, because one of the little boys who was in the PICU when Hayden was there did not get to go home with his family. It was an eerie coincidence that the day Hayden was discharged, this boy's family was having a funeral. It makes me feel so saddened.
I'm back at work now and trying to keep my emotions in check as much as possible. It's hard, what with my hormones going nutty from not breastfeeding and the worry about our success in parenting a "special needs" child, Todd finding a job that allows him to care for Hayden, getting bills paid, etc. etc. I'm just so glad that I have this wonderful network of friends that I can bawl in front of! I'll try to get in touch with everyone, but it will have to be after 9PM. I just got our Nextel bill in the mail, and it almost put ME in the hospital!

Monday, May 16, 2005

good news

And finally, some good news! Our older son's DNA test came back negative for CF, meaning he is not even a carrier! Yahooo!
We are still waiting to hear of Hayden can go home today. One doctor said yes, the other needs to agree. The scary part will be bringing him home, since, if something goes wrong, we won't have the nurses and the equipment right outside our door. Our family has a huge adjustment coming up....breathe....breathe......we'll take it as it comes!

In other news,I got to cheer my old boss/friend, Andy on as he finished the 25K River bank run> He did an excellent job, I believe he came in somewhere around 1:40. (and he's in his early 40's too!!!) The winner came in around 1:15, I think. I snagged some pictures, hope to post sometime soon! We also have pictures of Hayden without his feeding tube that I need to get on here. He's been laughing and chatting up a storm, but WILL NOT smile for the camera. I think he gets mad when I cover my face with it. Ah, well. At least I know he's smiling!

Tuesday, May 10, 2005

Mother's Day

I certainly had a wonderful Mother's Day, it was spent with the baby sharing laughs, coos and giggles. He seems like a perfectly healthy baby were it not for the facts and the obnoxious tube sticking out of his nostril.
The doctors want to keep him at the hospital a bit longer. They say he is not gaining weight at the speed that is needed. There has also been talk of putting in a G-tube before he goes home, to ensure that he gets enough calories during every feeding.
I'm getting very tired - of the hospital scent on his skin, the tiny room, even the gorgeous view is beginning to wear me out. I'm forever grateful to all the friends and family who have been huge pillars of support. I would not have made it through this time without all the encouraging words and prayers!!!!
Tonight, Lori has offered to do the grocery shopping for us, I can't believe that I haven't been to the supermarket in over A MONTH!
I promise to keep you all informed, I am getting all of your messages. I hope to thank you all individually - for now I am rushing through the day to get to the hospital so I can hold my little baby as much as possible. One positive out of this experience is that Hayden and I have truly bonded as mother and son, and that is the best Mother's Day gift ever!

Sunday, May 01, 2005

view from window Posted by Hello

Looking better Posted by Hello

scary part in the PICU Posted by Hello

new adventure

We are now about to embark on a new adventure. Hayden has been diagnosed with Cystic Fibrosis. Todd and I were not aware that we were carriers, as it has not shown up in our family previously. Hayden is off the ICU floor and the Dr.s are working to get him to eat by mouth again. CF is a chronic illness that is survivable as long as the treatments are done daily. He will need to take enzymes before he eats ANYTHING, have treatments by nebulizer and "puffer" daily, have chest percussion therapy daily and will need to stay away from other kids with CF and kids who are sick or have a cough or cold. He needs us to become germophobes, basically, and we must constantly wash and sanitize our hands. The trick is to avoid Hayden catching any sort of lung infection, as this can be fatal to someone with CF.
As far as Hayden's progress, he is looking bright and alert and is eager to learn, he has figured out how to put his pacifyer back in his mouth! (I know, I am anti-paci, but he needs it while in the hospital, he is experiencing some major trauma!)
Thanks again to all of you for your thoughts, prayers and support. We can't wait to have our family back home together!