Tuesday, September 29, 2009

“I’m gonna stand on a mountain top, and tell the news…”

Posted Sep 29, 2009 6:14pm
Hello friends! We’re back from Arizona safe and sound. Sarai did GREAT in the planes, all weekend really. She had everyone wrapped around her tiny fingers. (Actually, not so tiny these days. We had a doctor’s appointment today and she weighed in at 7lbs 14 oz! But that was with her diaper and onesie on.) It was so HOT out there! Don’t believe what people say about dry heat not being as bad, it was really not and the sun was brutal! It cooled down nicely at night. It was great to spend the weekend with Katie and Sarai. Katie had a ball passing Sarai off as her own. Humph. I made her from scratch!

We met some really nice people this weekend too; Parents who are involved with CBR because of how passionate they are about the possibilities cord blood has for saving peoples’ lives. We also met some parents who have also used their child’s cord blood, like we did. You may remember from way back, after Sarai was diagnosed with PVL, that my cousin Julie sent me an article about Chloe Levine, a little girl with Cerebral Palsy who was reinfused with her cord blood at Duke. Well, I met Chloe’s parents, Ryan and Jenny! That was a really wonderful feeling, kind of coming full circle.

I met Sherry Barker, my cord blood sister! She was such a doll (I had no idea how funny she was!). She’s the Transplant Coordinator that really held our hands through the reinfusion process. She was wonderful.

We met the founder and CEO of Cord Blood Registry, Tom Moore. What a smart, down to earth and amazing man! I can’t even fathom coming up with the idea for this company, he was so ahead of his time. But there it is. He’s got an amazing staff who are all hopelessly devoted to doing the best job possible for their clients.

So, as you can imagine, I’m now hopelessly devoted to telling people how important it is to bank cord blood. They told us it’s estimated that 1:217 people will need their cord blood in their lifetime, and those odds will just increase as more and more research is done and more conditions are found to be treatable with cord blood. The bottom line is, I just CAN’T imagine how I’d feel if we found out we could have used Sarai’s cord blood and we didn’t have it.

I hope that if you know anyone who’s expecting a baby that you’ll pass our story on and tell them how important banking cord blood is. If you know anyone who has a question, send them my way! I’ll talk to anyone, and once I’m on this soap box, I can go on and on! And if you know anyone who decided to bank with CBR, I have a “mom code” that can get them $250 off. (MSARI) Time to take this seriously!

I swear I won’t turn this blog into a CBR commercial, but I had to put it out there.

Adam and I took Sarai to Friday’s tonight, our first trip to a restaurant. She had her pulmonology appointment today, that was fine. They’re ordering a pneumogram (she had one in the hospital) to see how she’s breathing to be sure it’s safe to take her off the caffeine and the prevacid (she’s now on prevacid because we couldn’t find liquid prilosec). Tomorrow her speech person comes, Thursday a woman comes to work with infant massage with me, Friday Katie and Mom come down to go look at a wedding dress for Katie in Connecticut. Whew, busy as bees!

Monday, September 21, 2009

"Life is all right in Amer-EE-ca!"

Posted Sep 21, 2009 9:09pm
Well, we’re starting to gear up for our trip to Tucson. I’m really excited! Katie and I will probably have a few laughs. Poor Sarai. This will be her first whole night with the “giggle twins.” We’ll probably be keeping HER up all night!

Sarai had her first visit with the speech therapist today. She’s going to work with us to try to get Sarai to eat more quickly. Feedings can take anywhere from 45 minutes to an hour and a half! But that’s only nursing, she’ll take a bottle in 10 minutes. I can see why people give up nursing, but I’m not ready to throw in the towel yet. The speech therapist watched her eat and gave us a couple strategies to strengthen the muscles in her mouth, like playing tug-of-war with her pacifier. So, we’ll try it.

Did you know there is a new play on Broadway called “Superior Donuts”? I swear it’s not me sitting on a stage with my breast pump. (If you’re new to the blog, read the update “It’s time to make the donuts!” on July 28th.)

I have to talk to you guys about something. There is a certain 4-letter word I’ve used A LOT since I’ve become a mother… and I’m not proud of it. It’s a word I’ve never been comfortable with, and it’s now part of daily conversations with almost anyone I talk to. OK, maybe not anyone, but a lot of people! I’m ashamed. There just seems to be no way around it. The word I’m referring to is, of course… POOP. I cringe every time a doctor asks about Sarai’s poop (and some doctors actually use the word “poop” too!), or when I have a poop-report for Adam when he gets home. What has become of me?!

So if you have any alternate words for poop, feel free leave them in a comment below.

Thursday, September 17, 2009

“I’m leavin’ on a jet plane, I don’t know when I’ll be back again…”

Posted Sep 17, 2009 9:27am
So, it’s official… Sarai is going to Arizona! Can you believe this girl?! North Carolina, Arizona… she’s a traveling fool (she gets her adventurous side from me!). On this trip we’ll meet some other families who have had the infusion, along with other families who are big cord blood banking advocates, and we’ll get to tour the facility where the cord blood is banked. They mentioned that I might do a taped interview. How cool! Unfortunately Adam can’t get off from work. We’re both really bummed about that. But (my sister) Katie has offered to step in and take the trip with us. There is NO WAY I’d be able to fly with Sarai on my own. We’re outta here a week from Friday!

We heard from Dr. Escolar, the developmental neurologist from the University of North Carolina. She spoke with me about the results of the MRI that she did. She likened her brain to a highway… she said that the main highway isn’t damaged, but there’s a couple of exits that are blocked. How that will effect her development, we don’t know. She might know more after two more MRI’s. She said, as Sarai develops and begins to use different parts of her brain, she’ll be able to see the growth in the scan and have a better idea what the future will hold. So it looks like we’ll go back to NC in December and March for the MRI’s, and maybe during one of these trips, Sarai will get another infusion. Lots more traveling in this lady’s future!

Sarai had a doctor’s appointment with her pediatrician the other day. She had her first shots, OUCH! But she did very well. The last time I saw her doctor I asked if Sarai’s muscles seemed stiff, she said, “I wasn’t going to tell you unless you asked, but yes.” Yesterday as soon as she touched her, she said, “Wow! She’s much looser!” Is it because she’s maturing? Or because we’re doing stretches with her everyday? Or because of the cord blood? We’ll probably never know. But progress is progress and we’ll take it any way it comes!

Today was the NICU graduation party. What a nice time we had! It was great to see so many nurses and doctors who took care of Sarai. (We saw Dr. Doom, but steered clear!) We met a 6 year old girl who weighed 12 oz when she was born!! Isn’t that amazing!? Her mother told us they thought she might never walk or talk, and she was sure doing all of that and more today! There were tons of people there, so many children. Sarai got lots of “Ooohhs” and “Ahhhsss” as we walked around. She’s the star of the show, clearly!

Saturday, September 12, 2009

“It’s raining in Baltimore, baby, but everything else is the same…”

Posted Sep 12, 2009 12:02pm
I wasn’t going to write anything, but I saw Marion in school on Thursday night and she strong-armed me into posting a new update. : )

Adam had to leave yesterday for drills. He won’t be back until tomorrow night, so it’s just been us girls. Beth came to visit with little Alora yesterday (Sarai’s first girl friend) and then Christen stopped by. A nice visit was had by all!

The people from Early Intervention came on Wednesday. Sarai will start getting physical therapy and speech once a week. How does a newborn get speech, you ask? Good question! They’ll just work on her communication skills. For now, they’ll start working on eye contact, tracking, getting her to interact more and more. They give me ideas on how to position her, games to play, stuff like that. The women who were all here for the evaluation were all great. These services should start up pretty soon.

Some pretty exciting news! I sent my friend Sherry from CBR the link to the youtube videos. She thought they were great and she put me in contact with another client representative from the company. This representative, Debbie, invited Adam and I to Arizona for an event they’re having. We’d get to tour the facility, meet other families who are real advocates for cord blood banking, and meet three other families who have also gone through with the transplant (cord blood infusion). The event is in two weeks! We’re not sure if Adam can work it out with his schedule, but I’m dying to go! I think it would be so neat! I’ll keep you posted. Sarai is sure one travellin’ baby!

Today, with all this rain, we’re just taking it slow. I may venture out to Target if Sarai is feeling up to it. We both slept today until 9am! What a treat that was! Looking forward to some sun and warm weather tomorrow!

Tuesday, September 8, 2009

“I remember we were driving, driving in your car… “

Posted Sep 8, 2009 5:20pm
I hope you all had a wonderful Labor Day weekend! We sure did! We brought Sarai up to Syracuse and had a really nice visit. She got to meet her grandpa Petryk (finally!) and her GG (great grandma). We stayed with my mom’s friends (well, they’re our friends too!) Linda and Kevin, because Bill was sick. They were fabulous hosts! If we didn’t get to see you we’re really sorry. We hope we’ll all get together soon on a more planned out visit. This was sort of last minute.

Our appointments went well last week. We’ll have follow-ups with the developmental pediatrician and the neurologist in 3 months. The developmental pediatrician gave us some stretches to do with Sarai 3-5 times a day. She doesn’t like doing them, but we’ve been good about it. Early Intervention is coming tomorrow to do their evaluation. I don’t know how long it will be before services start.

Adam has drills this weekend and goes back to work next week. Booooo.

Our carriage was delivered today, thanks to Sarai’s cousin Brena and her Abuela Tirado. It is beautiful and we can’t wait to take it out for a spin! Thank you!

Adam and I were reading last week that preemies should be worn in a sling for up to 3 hours a day, so I started looking around for different kinds. I found one on Babies R Us that looks like something you’d see women use in Africa or Thailand, it’s called a Moby Wrap. It got great customer reviews, so I ordered it and I LOVE IT! I can carry Sarai all over and use both hands to do anything. I’m actually wearing her right now, and she’s asleep and cozy as a bug in a rug! It’s my favorite thing.

My due date was last Thursday! Sarai is now over 2 months old and weighs about 6 lbs 8 oz. She’s a veritable beast.

Tuesday, September 1, 2009

“Video killed the radio star. Pictures came and broke your heart.…”

Posted Sep 1, 2009 6:24pm
Hi everyone! Everything has been going well down here with Sarai. She’s still keeping us up at night though. Sarai is still on caffeine, she gets her dose everyday at 5pm. We were assured by the doctors in the NICU that caffeine for infants only stimulates the part of the brain reminding them to breathe regularly, but the pulmonologist today suggested that we should give her the caffeine an hour earlier each day until it’s given in the morning. She said, it is a stimulant after all. Maybe that will make a difference. Other than that, the doctor said she was doing well. We’ll continue with her on caffeine for another month, and then they’ll do a pneumogram and check for apneas and de-sats. Hopefully that will be the end of the prescriptions.

I finished editing the video of our trip to Duke, and Sarai’s Excellent Adventure is now available for you to view on YouTube! Copy the link below, start with the prequel, then watch days 1-6. It’s nothing fancy, but I hope you enjoy it!


Good luck teachers going back to work tomorrow! I feel for you! : )