We
wanted to take a few moments to express our appreciation for the incredible
amount of support we've been getting.
This Blog and Facebook
In
the beginning we were very reluctant to share information or pictures. Alexandra
was quite small (3 1/2 pounds) and she had a lot of tubes and wires that were
quite disturbing to see. It just was not appropriate to post pictures of
such a vulnerable baby. When you think about it, the whole sick and
premature baby "thing" is obviously a very private situation.
Also, we weren't exactly ready to go talking about it with anyone who might
have stumbled onto Facebook or a blog.
As
time went on, Alexandra grew and got rid some of the unsightly tubes. At
the same time, we became more comfortable with sharing limited facets of
Alexandra's life. We were searching hard for a way to balance these
concerns with the notion that Alexandra's friends and family were anxious to
know what was going on. That's how this blog came to be.
Once
we decided to start the blog, we were really overwhelmed by the response.
A lot of people told us how they really wanted to know what was going on, but
put more value on our privacy than their curiosity. We completely understood and appreciated the discretion. In the blog we found a
way to share Alexandra's story through our eyes. It's also a great way
for everyone to see her grow through the pictures.
A
huge number of people have viewed the blog from across the US and 8 other
nations. The last time we looked at the statistics (noontime on Friday),
the blog had been read more than 2,200 times. We haven't kept count, but
there have been hundreds of comments on Facebook, "Likes" for various
status updates, and notes of encouragement in private Facebook messages.
It's Not Just the Blog
One
of the most important forms of support we've gotten has been from our immediate
families. I know it probably goes without saying, but without family,
Suhey and I couldn't continue to work. That's important because we still
can take more time off with Alexandra when she comes home, not to mention the
obvious need for income. Hey, we've gotta pay for all these fancy
babysitters!!!
The
grandparents have been the biggest help. All four of them spend time with
the baby on a regular basis. We are very keen to have someone with
Alexandra as many seconds of the day as possible. When they're not
visiting her, they're helping us with mundane tasks like laundry or going to
the cleaners or picking up something at a baby store. Some grandparents
drive 20 minutes each way EVERY DAY, while others drive an hour each way a
couple times a week. The driving in South Florida isn't pleasant but they
do this routinely on top of the time they spend with us.
Certain
friends have also been key to holding onto our sanity. Some of them
"break into" our house and jam the fridge full of cooked meals (including
paper plates and plastic forks to avoid time-consuming dirty dishes).
They also share some Chinese or pizza dinners with us from time to time.
Others have helped orchestrate a stealth intervention to get Suhey to go to
dinner (otherwise she only showers, works, does baby laundry, or occasionally
sleeps). This is of course in addition to the intangible support we get
through notes, cards, texts, and voice mails.
Friends on the Hospital Staff
Alexandra
has made friends with a fairly large number of people in the hospital.
What can i say? She's a charmer! She's got lots of NICU staff that
really take care of her like she's their own. Not all of the NICU staff
are like that (some you have to really hound to do their job), so when her
"friends" notice this, you can truly see their feelings for Alexandra.
Some of them get downright protective of her; of course, we love that.
Realize I am not talking about the pharmacists and technicians that we know, I
am talking about people who we've met since this happened (nurses, respiratory
therapists and certain doc).
As
for the NICU's pharmacists and techs, they are also great. The
Pharmacists are always mindful of what she needs, and when she needs something
new, the technicians have it there in a jiff. It's also the pharmacists
and techs who make her IV nutrition at an outside company called CAPS.
Suhey used to work at that company, so they also take Alexandra's care very
personally.
Wrapping it up
It's
been a tough experience we wouldn't wish on anybody. However, the
collective good wishes and supportive actions you all have undertaken is how
we've made it this far. In that spirit, and on behalf of Alexandra, Suhey
and I dedicate this posting entirely to you! Updates on Alexandra will be
posted in a few days...
Awww :) love you guys
ReplyDeleteWith g-d will she will be home soon! Xoxo
ReplyDeleteLove eases the negative effects of tough times. I'm so happy you all are surrounded with tons of love and support. Alexandra will be home soon <3
ReplyDeleteI love you all. Xoxoxo <3 God bless <3