Wednesday, September 3, 2008

"apnea countdown", or, "psyche!"

When Shoghi had his feeding tube taken out last week, it never had to be replaced - since then, he's been taking all his food by mouth and meeting his intake requirements. It is because of that, then, that Shoghi and Maxwell have both been on the "apnea countdown". Both boys have prematurity apnea, so they need to go 5 days without a "spell" before they will be allowed to go home. This is all we're waiting for now. This team of doctors doesn't like to send babies home on apnea monitors because they are apparently too sensitive and alarm 20 false times for every authentic episode.

On Friday, I was told that Shoghi would be episode-free on Tuesday (yesterday) and Max on Thursday... so it was with great anticipation that Laurie and I arrived at the hospital yesterday. I assumed that we would be finalizing details of the carseats, etc., and generally spending a joyful day preparing to take the boys home. Alas, I arrived to find out that Shoghi had had a spell during the night, and Max had one that morning. Reset the countdown for 5 more days. I cried many, many bitter tears.

(I'm leaving this next paragraph intact, for now, unless it causes further misunderstanding, but I want to be clear about where I was coming from. So many of you have reminded me to be optimistic and have sent your loving support in comments and emails. I didn't mean for the following to seem like some kind of passive-aggressive attack. It was more of a reaction to the hospital staff, who keeps prodding me all day long to look on the bright side. When I was writing this late last night, after more than 10 hours in the hospital, that was all I could think of. So, please don't feel like this was aimed at you! I have so appreciated all of your love and support.)

Please, I beg of you, don't ask me to think of how healthy they are or remind me to be grateful. It goes without saying that I am profoundly happy that my two sweet sons are healthy, doesn't it? Shouldn't it be obvious that I don't want them to stop breathing at home? All of that is true, but at the same time, every fiber of my being cries out for them. I want to be with them all day and night... I want to be alone with them again, for the first time since we were all one unit. I feel torn and bruised every time I have to leave them. It just shouldn't be this way.

Anyway, without further ado or self pity, here are some photos of my beauties:

it's looking like Max might have red hair!
at the very least, it's strawberry blonde.

and here is Shoghi, with his ever-calm and
expressive hands and his lovely locks.

kangaroo care is so much fun with a good baby carrier.
here are Shoghi and me, happily shuggling with the moby wrap.
i got an awesome sleepy wrap from Rachel that's so comfy!!


  1. Oh, Honey.... it must be so hard! I will be praying for you and your boys to be home together as soon as possible!!

    5 days can be such a loooong time. But before you know it, you will be up all night again ;) Hell, before you know it they'll be going to college.

    So you better not blink.

    Love you so much!!

  2. i can't imagine all the emotions you must be feeling each day but i sure do love seeing that smile on that kangaroo mama's face! love to you all!

  3. Oh, I see the makings of some cute baby double chins! They are chubbing up quite nicely. hee, hee! You hang in there, Celie. I'll bet it was quite the disappointing day yesterday - to say the very least. We'll pray that the countdown is over in 5 days!!!! Shennon

  4. Unless they've gone through it, I doubt any person has a clue about what you're feeling. You deserve to be able to be home with your boys, just soaking their presence in. I'll keep you in my thoughts, as you have been very much lately. Love ya!

  5. I understand that it has to be SOO hard to be away from them. I'm crossing my fingers for you that this time will be "the time" and that they will be home with you by next week.

  6. (((hugs))) C. I hated those comments. "Be thankful they're healthy, they just need to grow." Bah. Just keep plugging on and soon you'll have them home.

  7. Big hug my strong sister- I love to see these comments from your amazing, supportive friends, too. It's been one hell of a week~ here's hoping that next week is better. :)

  8. there is no way to explain or express the mother/child connection other than to say it is visceral, gut-wrenching... a "heart on the outside" kind of thing. love you

  9. (((i hope you're finally enjoying quiet snuggles with just the three of you)))

    everything you describe makes perfect sense and i can't see anyone being upset with it. it's mama instinct to need to feel and smell their skin and breathe with them in the shade of your love.

    i hope i don't have to face NICU or SCBU, but your blog will be inspirational if i do. thank you for the fact that it's not just been factual updates, but rather sharing something from within you too. that's a priceless gift to us all.