Day 43 (April 26)
White Blood Cell: 4.5
ANC: 3
Platelets: 71
I am not being lazy; her counts stayed exactly the same. That is all good in that she has not needed a transfusion– platelet or whole blood– for a week.
The big challenges of the day were to get the studio ready for Haley’s arrival tomorrow, and to get Haley to take all of her medications by mouth. It was the first time I was in the studio. This will be Haley’s new home for the next several weeks, until we make the trip back home. My hope is that we get discharged early enough today for Anna and Haley see each other. Anna has not been allowed to see Haley while in the hospital. So it’s been two months since these sisters have seen each other. I have prepped Anna for it. She already knows that before we touch Haley we have to wash our hands and purell. Let’s see if she actually does it.
We spent a good part of the day packing up the room. Favorite night nurse stopped by to see Haley, and I almost lost it. It is a very unnerving and isolating feeling to be leaving Haley’s room. Nurses and doctors alike have all told me at one point or another how great it is walk into Haley’s room, to Haley’s world, even for just a few minutes. She’s that bright of a person, even at 10 months old.
Tomorrow. I am not looking forward to tomorrow. It’s too emotional. While I know this is a needed step forward in the process, it is possibly the most terrifying one so far. No one to help. No one to catch something wrong with her before it gets bad. No 24 hour nurses, no controlled environment, no doctor to say she’s right on target, even if she’s spent a night vomiting.
Guests today were: Savta (who, after two weeks of being such a wonderful support here in the hospital– we will miss you very much), Grammy and Gramps, and Favorite night nurse.
Funny moment of the day was seeing how smart Haley is when it comes to her medicine. She now refuses to cry with her mouth open, lest someone stick something bad in there.
Here’s to a wonderful Shabbat. We hope the sun is shining and that Ranaan and Anna are able to visit. And may your first night out of the hospital cocoon pass with very few bumps in the night, and at least 4 hours of uninterrupted sleep. Ask if the hospital will let you take a blanket or two, like they do for newborns, so Haley’s smell and touch will be a little more familiar.
Hatzlacha and and continued refuah.
Linda wnd Yossie
April 27th, 2007 | #
have a good journey to the studio.
watch plenty of bad TV, and let’s hope the both of you get some rest!
hugs lauren
April 27th, 2007 | #
Trying to give this clever girl medicine is definitely going to be a challenge. Whn we lived in India I used to have to give the boys a horrible blecky green anti-malarial liquid med once a week. I remember how stressful that was. And that was one med, once a week! I can’t imagine having to give a gazillion on a daily basis. What I DO know is that if anyone can find a creative way to do it, it will be you. I hope you keep notes, though. I looked online and there is definitely a need for a good article on how to administer meds to a reluctant baby.
Continuing to cheer–Hiss, boom, bah…rah, rah, rah–Go Haley, Go Haley, GOOOOOOOOOOOOOOOOOOOOOO HALEEEEEEEEEEEEEYYY! xxoo Cristina
April 27th, 2007 | #
Good luck venturing out into the world. As you expressed it must be very scary but also a great step towards the future. I know this next year is going to be very hard for you guys…don’t forget to lean on the amazing support system of friends and family you have in NY and DC–any one of us will be ready to jump in at a moments notice. Love, heather
April 27th, 2007 | #
Good luck, Tansy. Do remember that you have always been the one to catch things before they get bad, and you and Haley are the best at saying whether she’s right on target. It must be scary to feel it’s all on your shoulders, but you’ve been doing most of it already. And the doctors and nurses are still nearby, and still doing follow-up care. You’re moving one step closer to where you want to be. Take it easy the next few days, insofar as you can. You’re doing great.
April 27th, 2007 | #
Tansy, know that we’re thinking of you as you leave the shelter and constant care of the hospital behind. This is really such a great step – a step towards reclaiming a normal life for Haley. While you may not have doctors and nurses around 24/7 anymore, please remember that you have friends and family who want to do whatever we can to help.
I’m so excited for Anna that she’s going to get to see Haley again. If she loves washing her hands as much as Gaby & Penina do, you’ll be going through a Purell bottle a day. Funny thing: If you ask my twins who they’re going to marry, they will will name the other. (It’s so sweet to see how much they love each other that I don’t bother to try to explain why it’s a no-go).
Best of lucking moving into the apartment. Haley, keep on doing what you’re doing! Go platelets go! Shabbat shalom,
Deb
April 27th, 2007 | #
Someone once told me to “jump” and it would all be okay. And it was. And it will be with you. Jump — take your daughter home — breathe. Try not to be scared and trust your instincts — you are the most intuitive person I know and she will be great. And remember — lean on your friends and family — they are all there for you.
Lots of love sent your way in this new chapter of your life — Mira
April 27th, 2007 | #
We’re so happy that Haley’s well enough to leave the hospital. Good luck at home.. Haley seems to be in very capable hands, though your fears are certainly understandable. May she have a speedy recovery. We’re rooting for all of you. We must find a way to get together, God willing when your lives return to some stability. Have a great shabbos.
Love cousins Hillel and Sashi Well
April 27th, 2007 | #
I wish I could see Anna’s and Haley’s reunion. How wonderful! I bet Haley will enjoy watching and being with Anna so much. And vice-versa. Trust your instincts. You’re going to do fine. And I’m sure you’ll have lots of check-ups during which you can run all your questions and concerns by the docs. And don’t hesitate to bustle her on in if you think she needs to be checked on. I’ll be thinking of you all day today as you make the transition. love, Dana
April 27th, 2007 | #
As we write this, we are hoping Haley is esconced in her “pied a terre” and enjoying her new found freedom. Can’t wait to hear about Anna’s and Haley’s reactions to eachother. It will probably be a big comfort to Anna to actually see and touch Haley and know that she is all right.
We know you can make this jump and handle all that comes, as difficult and as scarely as it feels. We are rooting for you and we continue to pray that Haley makes a speedy and full recovery. This scarey step is so necessary to that end. It must feel wonderful to know that so many people are thinking about all of you and sending love and good wishes your way. You are the center of our universe! Shabbat Shalom!
April 27th, 2007 | #
I haven’t written in awhile but I have been one of your faithful readers. You gotta do what you gotta do and you have been gotta doing all along so going home is the next gotta do! One thing that I have learned from these postings is is that if anyone can do it, it is YOU! Shabbat Shalom and hope all goes well.
Susie & Barry
April 27th, 2007 | #