We were going through Zoey and Ayla's boxes the other day- recalling how incredibly small and fragile they were and remembering how that 5 month hospital stay, only a year and a half ago, feels like it was only yesterday....yet seems long ago.
Zoey at 10 days old holding Ryan's finger
We're contemplating building a mini-wooden cedar chest for Zoey's memorabilia. Shifting through her things; the cards, diapers, blankets, hospital gear, blood pressure cuffs, hair bows, hand prints and other miscellaneous items from her short 24 day stay is healing and bittersweet. So tiny- it's impossible to imagine unless you've actually seen and even then, you forget how incredibly fragile and small they were.
The term 'micro-preemie' is just that- micro small.
Sweet Zoey- 8 days old and 1 day after heart surgery
Can you imagine performing heart surgery on a baby less than 2 pounds and medically extremely fragile? Wow.
We were asked to share our story with a bereavement group in May and have been pondering on what we should share. The group specifically wants us to speak about multiples and how hard it is when parents lose one baby and still have to come back to NICU for the other. It's not easy and we recall a sense of sadness and loss when we walked into the room Zoey's incubator was no longer there....
Ryan comforting Zoey- 10 days old.
However, the real journey begins once arriving home and the shock of the NICU passes. One woman accurately described, "People think, 'Oh, the baby is small, it's a miracle it survived and now they take the baby home and that's it, everything's fine.' But it isn't fine. The real story, especially with extremely premature babies, is that it doesn't end with release from the hospital. That's when it begins."
In the meantime, still thinking on what we should share. If we were going to be speaking to you- what would you like to hear?
Sitting next to Zoey
1 comment:
I would like to hear what your families can do for you.
I felt (and still feel) "helpless" at times -wishing I could offer more support or whatever is needed.
NICU is a whirlwind that no one can possibly comprehend unless you have experienced it. That being said, encouraging NICU parents to ask for help and ask for what they need, would be beneficial to everyone. Those of us on the "outside" feel helpless, those on the inside can't think of much more than anything but the day to day survival, small milestones, etc. (I am not quite finding the right words, but I hope you get what I mean there).
Life after NICU: what can we help with here?
It is hard to ask for help but it's even harder watching your loved ones go through something like NICU and feeling helpless.
I also really like(d) your Caring Bridge and blog. It helps families feel more connected to the situation and I think it is a great way to share medical updates, knowledge, etc. I also think it helps family members realize the "severity" of the situation and the imporance of keeping things clean, etc.
Anyways, just some thoughts
love ya
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