Sunday, December 27, 2009

I hope you all had a wonderful Christmas! We were busy running around, as usual. Sarai got some adorable outfits and some cool toys. I’m working hard trying to get her to play with them. She can spin some of the “spinny things,” but I’m not so sure how much she does on purpose and how much is on accident. But I’m confident that very soon she’s going to realize that her hands are part of her body, and she can USE them!

Last week, just before we went to Duke, Sarai had a little cough and runny nose. That’s back again. We’re giving her a little extra vitamin C, the doctor said as long as she doesn’t have a fever, it’s normal. The cold makes her pretty tired, and gives her what Adam calls her “sexy baby voice.” It’s sort of pathetic, but we can’t help but giggle at it. Mean parents!

Sarai’s been eating some food for the past week, and that’s made for some interesting diapers. She’s had cereal, pears and carrots. After the first day I thought eating would never fly, but it’s not going bad. So far she likes the pears best.

You guys know what a crazy year this has been for us, probably not the best for our family. But you also know some pretty amazing things have happened, so I decided to make a list of the top 10 best things about 2009… here goes!

10. Katie’s “slammin” cheese fondue - I don’t think I’d have made it to10,000 calories in one weekend without it! Thanks Kate!

9. Trip to Tucson with Katie and Sarai – fun!

8. My moby wrap – they say infants who are carried in a wrap cry up to40% less… I think I’d just cry all the time without it!

7. My new haircut – love it!

6. Being able to stay home with Sarai for a few more months than Ithought… thank you GCSD!

5. Meeting Dr. Kurtzberg at Duke and Dr. Escolar at UNC… they put a verypositive outlook on Sarai’s future.

4. VERY thankful that we banked Sarai’s cord blood!

3. We have the best family and friends, ever, hands down! We could nothave made it through this year without you all.

2. I have a wonderful husband who is patient, understanding, and an excellent father.

And last but not least, of course….

#1. Most thankful for our beautiful daughter. What would we do withoutour Sarai??

So that’s it, 2009 is almost behind us, and I’m very much looking forward to what 2010 has in store. Happy New Year!!

(Happy Birthday Jeff!)

Wednesday, December 23, 2009

“Walkin’ in a winter wonderland…” Dec. 23

So, we’re back in Syracuse, after just 3 days at home, where I don’t think it ever stops snowing. Sarai’s first Christmas will definitely be white!!

All our appointments have been rescheduled for the Duke trip for the first week in January, right after New Year’s. The reinfusion is set for Tuesday, January 5th. Adam’s got to take care of the paperwork for his job, and hopefully the three of us will be headed back down in two weeks. I’m SO glad they were able to get us right back in!

And, I keep forgetting to tell you guys, but I’m not going back to work in January!! The new plan is to go back in May and finish off the year in a kindergarten class. I’m so relieved, I can’t even tell you. So I’ve got a few more months with my little girl. Thank goodness. We’ve got lots more appointments to follow up with and I think they’ll be adding another early intervention service, vision therapy. Never a dull moment.

Christmas is almost here! And before we know it, it’ll be 2010! I’m ready to ring in the New Year and have a fresh start. I hope you all have a very merry Christmas!!

Saturday, December 19, 2009

“You’ll be in my heart… yes you’ll be in my heart…” Dec. 19, 2009

Hi guys.

Last week was a complete whirlwind. Going through the calling hours and the funeral was actually very healing. It was great to see lots of my dad’s old friends and to hear some cute stories. Katie and I spent some time getting pictures together and laying them out on poster boards for display, also enjoyable, seeing my dad young and healthy. Our mom was right by our side the whole time, that meant a lot to both Katie and I, A LOT. Thanks so much, Mom.

Most of you have already seen, but just in case you haven’t and you wanted to see the obituary, copy and paste the link…

Now that the hustle and bustle is over, I’m trying to adjust to being a person who has lost a parent. This is way more traumatic than I ever thought. The void I feel is immeasurable. I just can’t believe I’ll never talk to him again. I mean, I just had a perfectly normal conversation with him a week ago. But I am comforted knowing that he’s not suffering, and feeling like now he’s watching out for all of us. I feel like now he’s seen my apartment, that he’ll really be able to check in on us in a way that he couldn’t before. Sound silly? I don’t know, but I know he’s out there keeping an eye out for us.

I got a call from someone at Duke on Friday. They’re trying to reschedule all the appointments for the week after New Year’s. I should know for sure by Monday.

We’re snowed in for the rest of the weekend. Brrrrr…..

Thanks to everyone for all your kind words, thoughts and prayers. It means so much, I can’t even tell you.

Monday, December 14, 2009

“You're in the arms of an Angel; may you find some comfort here.” Dec. 14

Hi everyone. I can’t even believe I’m writing this, but to all of our shock, my dad passed away today after a 30 year battle with MS. He’s been so brave and strong for so long while fighting this awful disease, I don’t know how he did it.

I just can’t believe this. You would think we’d have been prepared for this, but there is just no way to prepare.

We are all now in Syracuse. I called all the doctors we were supposed to meet with in NC and we’ll be rescheduling the infusion and all the other appointments as soon as we can. For now, we’re focusing on our family.

I’m so glad my dad was able to meet Sarai and hold her and see her smile. When he looked at her, his whole face just lit up. He will be very missed by all his many friends and family. I know he’s in heaven right now, bouncing from cloud to cloud, free.

We love you Dad, ingumeter.

Friday, December 11, 2009

“Riding along in my automobile, my baby beside me at the wheel!” Dec. 11

Twas the night before a big road trip and all’s going well,
Sarai is excited to welcome back her stem cells!

Ok, I get no points there for rhythm, but it almost rhymes!

What a busy, bustling week we’ve had here! Sarai got 3 shots, including one called Synagis (for high risk babies to prevent RSV, a respiratory virus). The Synagis is nasty, the others she was fine with. But having the shots really put her out for a couple days. Poor Coleen and Bob had us over for dinner, and Sarai was not on her best “dinner-party” behavior. But she got weighed (at the doctor, not at Coleen and Bob’s!) and is up to 10 lbs 5 oz! Whew-ee!

Therapies have been going really well. And Sarai had appointments with the neurologist and developmental pediatrician this week too, both doctors she hasn’t seen since September. I was so excited to show off her smiles, coos and how much more loose her muscles have become. The developmental pediatrician is glad with how she’s growing and has progressed so far, but her not focusing on objects or tracking very well is a great concern. The neurologist referred her for vision therapy through early intervention, and the developmental pediatrician referred her to a neurological opthamologist. So we’ll be following up with all this after our trip to Duke.

Also, we mentioned to the neurologist that she’s fussy. This conversation went from 0-100 fast….
Me: She’s fussy. She doesn’t like to be put down, but she usually calms easily.
Dr: Is she fussy around the same time each day?
Me: No, not really.
Dr: Do you think it’s colic?
Me: I don’t think so, I think she’s just fussy. She’s getting better and better though.
Dr: Have you noticed any eye rolling or twitching?Me: No.
Dr: Well, even if you don’t see it, she could be having slight seizures that you wouldn’t pick up on.

What?? Really?? Or, she could just be fussy, right?? He wants her to have another EEG (she had one in the hospital that was normal) to check for seizures. I’ll keep you posted.

So, our second big trip to Duke is TOMORROW! I can’t believe how fast the time has gone! We’re almost all packed. We’re heading out in the morning, driving this time, to spend the night with my cousin Amy and her husband Kevin in VA. Then we’ll go to Cindy and Justin’s from there on Sunday morning. It will be a perfect way to break up the trip. I have no idea how Sarai will be in the car, but she usually just passes right out… I’m banking on that. We have appointments all week until Thursday in NC. The infusion is Tuesday, MRI is Wednesday, and we meet with Dr. Escolar on Thursday morning. She’s the doctor who was an amazing wealth of knowledge on our last visit. I can’t wait to see these guys!

I know you will, but wish us luck!! I’ll try to update the blog while we’re gone. Love you all!

Wednesday, December 2, 2009

“You’re in the arms of the angel, may you find… some comfort here…” December 2

Hi guys! It’s been a while, sorry about that. And because it’s been a while, you might have to read through this while I ramble a little… again, I apologize! I hope you all had a nice Thanksgiving! We sure did. My first Brooklyn Thanksgiving, it was fun!

Sarai’s doing good. She’s got good days and bad days, as far as her attitude is concerned. Can’t we all relate to that?? Yesterday was a BAD day. She was terribly fussy and didn’t even want to make donuts with me! (Was it a full moon?) Today was much better. She was smiling and cooing a lot, and just more relaxed in general. On Monday with her speech therapist, she said, “Wow, she’s so verbal today!” (The therapist said that, not Sarai. She’s got a good speech therapist, but not that good!) So, we take things one day at a time, and just know she’s growing and changing every day. Her head control is improving all the time, and she’s enjoying tummy time more. Lately I’ve been putting her on an exercise ball on her tummy, and she thinks it’s so funny! She pushes right up, looks around and gets such a kick out of rocking back and forth. Adorable…

We’ve had a babysitter set up for Sarai since last April or May. On Sunday she called me and said… she can’t watch her after all. I couldn’t believe it! I’ve really built a relationship with her. But she referred us to someone else, and now we’re all set again. Sarai has been watched for a few days with the former babysitter, so now will start with the new one with no “practice days.” We just don’t have time. Next week we have half a dozen doctor appointments and early intervention appointments. The week after, we’re off to Duke, then Christmas, New Year’s, and I’m back to work! So, it is what it is, and it will be fine. The woman is very nice and very happy to have Sarai.

Speaking of appointments next week… we see the developmental pediatrician and neurologist for the first time in 3 months. I’m DYING to see what they say! I’ll definitely let you know!

On our way to Duke in a week and a half… any ideas for slogans for onesies?? How about, “Welcome home Stem Cells!” I need a couple more ideas, help!!

I’ve been going to school for a few days, getting used to what our morning routine will be when I go back. It won’t be bad. My class is sweet, they ask every time I go in, “How’s the baby??”

I did an interview about our experience with cord blood banking, Sarai, and CBR with You can listen to it if you cut and paste this link…

It’s long, but there’s just so much to say!!

Speaking of links, my sister Katie thought I should make a public blog just in case anyone wanted to learn about us, so I made one and transferred all the blogs to that site (of course I would lose all the comments from you guys, so I’m not giving up this one!). But the newer and hipper version of Tough Little Peanut is….

If you want to check it out. It’s exactly the same.

Sarai was baptized this weekend, with Aunt Katie as her Godmother and Uncle Luis as her Godfather. It was such a beautiful November day, and Sarai looked like an angel in the baptismal gown that my grandmother made for my cousins and I with all our initials embroidered on it. My mom made her a beautiful Christening cap with Irish lace. It was such a special day for such a special baby!

Guess who's going to be 5 months old this week..... I can't believe it!

Wednesday, November 18, 2009

“Turkey lurkey doo and turkey lurkey dap, I eat that turkey then I take a nap…” Nov. 18

I hope you are all someplace where you can enjoy the beautiful fall weather we’re enjoying right now. It’s been a gorgeous and sunny couple of days! I know my friends and family upstate are WAY past peak fall colors, but the shots from Central Park on the news this morning were so pretty. I just wanted to take Sarai for her first walk through the park. Next thing you know the tree will be up in Rockefeller Plaza and then it’s all downhill from there!

Sarai, Sarai, Sarai…. she’s doing pretty darn good! Her speech therapist is a little concerned that she doesn’t really focus on anything. Well, not anything. She’ll focus on a face for a short time and she smiles like CRAZY when she’s focused in. But put any toy or doll or any object at all in front of her, and she works to look around it. I called the opthmologist and she said to not be overly concerned as long as she’s focusing on faces. She said, she’s a preemie, so she’s got some catching up to do, but she’s in a normal range for her development. (Plus, she just had an exam and her retinas are fine.)

Her physical therapist says she’s doing great, said today was her best day so far. She’s really pushing up on her arms and hands and can easily roll to her left from her tummy. We had better luck getting her to focus on us with less light in the room and no background noise. So we’ve got to really practice getting her to track our faces with less “stuff” going on around her; making the room darker and leaving the TV off more. That’s our homework!

We’re more than half way through November, and I just have no idea where the time is going! Going back to work is coming TOO fast, I can’t even think about it. I have to get lesson plans ready! Not to mention, Thanksgiving, Sarai’s baptism, our trip to Duke, Christmas… I have no idea how I’ll have time to shop, wrap or send out Christmas cards. AHHHHHHHHH!!! I’m going to throw a big fit on my first day back to school, dig my heals in and say, “You can’t make me go!”

We’re going to Adam’s sister-in-law’s for Thanksgiving. Quick, what’s your favorite Thanksgiving food??

Tuesday, November 10, 2009

“Let’s hear it for New York, New York, New York!” Nov. 11

Hello lovies! What’s new? Sarai wanted me to tell you all she said, “Hola!” And although she’s not a Yankee fan, she’s the tiniest bit happy that a New York team won the World Series. (Shhhh, don’t tell Adam!)

Where do I begin? The presentation I did on cord blood last week went really well I thought. It’s easy to talk about something I feel so strongly about. Thanks so much for inviting me, Stephanie!

I had to run out of the meeting to head up to Syracuse for the weekend. Sarai got to meet some friends and family. It was so great to see everyone and we had a great time. Sarai was really good, thank goodness! So far she’s been pretty good about not embarrassing me in public. We visited with my dad, and Sarai smiled so big for him! And at my mom’s house, she showed everyone how she can roll over and practically crawl! Seriously, not only does she pull her knees up under her body, she flexes her feet and tries to get some traction with her toes to push forward while rocking back and forth trying to move her arms too!

We had a doctor’s appointment today. Sarai got a couple shots (no flu shot for her because she’s too young this season). The doctor was so happy with how well she’s doing. She put her on her stomach and she showed the doctor her crawling motions, and the doctor just said, “Amazing!” She said if she didn’t know there was something “wrong” with her, she never would have guessed. (By the way, the physical therapist said last week that, on a scale of 0-10, 0 being perfect muscle tone, Sarai is about a 2. Not bad at all!)

I was sure Sarai weighed at least 10 lbs, but she’s 9 lbs 3 oz and 23 inches long, which the doctor said is just fine. She doesn’t really fall on the bell curve for her length and weight, she’s below the 5th percentile in both areas because of her prematurity. If she was a dog, she’d be a chihuahua. But she’s progressing steadily on her own curve and will hopefully catch up by the time she’s 2. If you look at her like a 2 month old, she’d fall in the 50th percentile for her length and the 15th for her weight, so she’s maybe more like a beagle!

We have our appointments set for our second trip to North Carolina for the second cord blood infusion. We’re going to drive this time. I can’t wait to see what Dr. Kurtzberg and Dr. Escolar say about Sarai’s progress!

Saturday, October 31, 2009

“Cause this is thriller! Thriller night!” Oct. 31

I hope you all had a spooky, candy-filled Halloween! In our house, Halloween came and went, and we’d never even know. Up here in our apartment in the woods, we’ve never had a single trick or treater. But I did go to school on Friday to meet my class and hang for a little while at their party. I got to see lots of co-workers, I really miss everyone! It is going to be SO hard to go back to work, but I kind of miss being in that “loop,” you know? My class seems nice. They were so cute in their little costumes. Tuesday is Election Day, and the kids will be off, but the teachers are working. I think I’ll stop by and crash lunch, bring Sarai to meet the Scotchtown crew!

Like I told you in the last post, Sarai seems so much more calm since the caffeine has stopped. Her physical therapist came on Friday, her second time, and she was just shocked at how different Sarai was. She said, over and over, “I’m amazed!” She said Sarai was TOTALLY socially appropriate. She was smiling, cooing, letting Vanessa (the PT) hold her and stretch her, completely different from last week. She was laying on her back and almost rolled over more than once! Vanessa couldn’t believe it! When she left she said, “I feel like I should hug you! This is so great!” Of course this is just one day, and she said she’ll really need to work with her through November before she has a real, clinical opinion about Sarai’s progress, but I’m encouraged! She also said that we should focus on stretching and massaging Sarai’s arms, they’re more tight than her legs. So I’ve been doing little bicep curls, shoulder raises and arm circles while we make donuts. She doesn’t even notice!

Vanessa has worked with several babies who were on caffeine and has seen changes when they were taken off of it, but she said she’s never seen anything so dramatic as this. But she also said, and of course it’s true, drugs have different side effects for everyone, maybe she just didn’t tolerate it very well.

Sarai is still sleeping better, during the day and at night. The past couple nights she’s been in bed around 9 or 9:30, waking up once to eat and going right back to sleep. She really seems to understand, when it’s dark out, it’s bedtime! (Of course as I write this, she starts crying!)

Next week we head to Syracuse for the weekend! Yippee! Friday morning I have my first cord blood presentation. I’m meeting with a few people (small group) from the Maternal-Infant Services Network of Orange, Ulster and Sullivan Counties. I put together a PowerPoint that I think really tells our journey, and gives lots of facts about cord blood banking. Wish me luck!

Sarai has a new cousin, Logan. Congratulations Eric and Tammie! And tomorrow is Katie’s birthday! Happy birthday little sister!! Sarai sends muchos besos!

Sunday, October 25, 2009

“On the day that you were born the angels got together…”

Good evening everyone! We had a really fun friend-and-family filled weekend. It was Sarai’s friend Alora’s first birthday! We had a ball, and it was great to bring Sarai and show her off while she was on her best behavior. We also headed out to Jersey for dinner with the Losier’s, and Sarai got to spend some time wit her great-grandma. Great friends, great family, great food, great times!

Sarai’s speech therapist has officially confirmed it…. She’s cooing!! I swear, I almost cried! She doesn’t do it often, but she’s definitely there! I’m so excited!

Physical therapy just started last week. She’ll get that once a week from now on. I really like this therapist, as I really like all of them actually. Everyone I know who’s had experience with Early Intervention has sworn what a great program it is. And so far we’ve had a great experience too. After her first meeting with us, the PT said Sarai seems to be in really good shape, good head control, moving around a lot. She gave me a couple strategies for tummy-time and I’ve been doing them. She really only worked with Sarai for a few minutes because she took a lot of time to really get to know her history. Hopefully in the coming weeks we’ll get to know her a lot better.

Sarai had a pneumogram done the other day. They did this once in the hospital ages ago. It’s a test to look closely at her breathing. After the last one, they decided she needed to be on caffeine to help regulate her breathing. This one was to hopefully stop the caffeine she’s on. The test was a serious pain! She was hooked up to a machine and couldn’t move more than 6 ft. away from the machine for 17 hours! But the results were “almost perfect,” and she’s now off the caffeine. Yippee! Plus, we won’t have to see the pulmonologist again, as long as we don’t have any unforeseen problems. Whoo-hoo! One less doctor.

I have to say… when the caffeine was started, we were told that (although caffeine is a stimulant) it wouldn’t make her “wired” like it does to adults, that it would only stimulate the part of her brain responsible for breathing. She used to take her caffeine at 5pm. When she came home from the hospital, and after several sleepless nights, we moved the caffeine (gradually) to mornings, and then we had mostly sleepless days. And that’s ok with me, but I’ve always thought she should sleep more for a newborn. Well, after only a couple days off the caffeine, I notice a HUGE difference in her sleeping patterns. She’s taken huge naps during the past couple days, and has been a LOT less fussy. Now let me tell you about her usual fussiness… my VERY baby-friendly Christin came to visit, and Sarai was her usual self; Christin couldn’t put her down for a second before she was crying like crazy. Even Christin had to say, “This is intense!” I had to say, “This is what my days are like!” But really, the last couple days, she’s been so much less fussy. I mean, it’s too soon to tell, but I see a notable difference since the medication has stopped.

Adam and I were just saying the other day, we’re really noticing some changes in her. She’s holding her head so much better, pushing up on her arms sometimes. She’s putting her hands in her mouth more, and when I put a ring in her hand, she’ll hold on to it for a while. With a TINY bit of help, we’ll guide the ring to her mouth and she’ll hold the ring in her mouth while she chomps away on it. Good exploring!!

Oh, I almost forgot!!! We have our date to go back to Duke! Sarai will get her second, and last, infusion of her cord blood cells on December 15th. She will then see Dr. Escolar at UNC for another MRI on the 17th. I think we’ll also go back to see Dr. Escolar in March for a third and final MRI with them. Dr. Escolar is the doctor who told us that the cysts in Sarai’s brain aren’t on “main pathways,” and that looking in the next months will show how she’s using her brain and will give a better picture of what the future holds. Of course I’m hoping that that MRI’s will show regeneration of the myelin that’s dammaged/missing.

I’m so sorry this is going on and on… but I have to tell you that my darling husband got me a gift certificate for a MASSAGE! I’ve never had one and I just can’t wait!!

Thursday, October 15, 2009

“Without a noise, without my pride, I reach out from the inside…”

Posted Oct 15, 2009 8:50pm
So, it’s mid-October… and it’s SNOWING!! I can’t believe it! I’m not ready for this!

Poor Princess Sarai has had a couple rough days with doctor’s appointments. On Tuesday, she had a couple shots. (She’s on a spread out schedule, so she goes each month gets 2 shots at a time, 3 at the MOST.) She had a couple shots last month and didn’t have a hard time, so I didn’t think much of this appointment. When we got into the office, there was a little girl across the hall from us, probably about 2 years old. She was crying, saying over and over, “Mom… mom… mom.” Then the doctor walks into the room and closes the door behind him and the girl starts shouting, “No.. no,… NO! NO! NO!” It was heartbreaking! I don’t know how I’ll handle this when Sarai is talking and can protest like that.

Actually getting the shots wasn’t too bad, but a few hours later she woke up from a nap SCREAMING. She didn’t have a fever or anything, and the injection site wasn’t red or swollen. We tried to make donuts together, no dice. That never happens! But after some Tylenol, she was much better and slept well that night. We’ll know to give the Tylenol before the appointment next month.

THEN, on Wednesday she had an ophthalmology appointment. This appointment was nasty! They stuck this medieval torture device in Sarai’s eye to hold it wide open. Then they have me put her on my lap so I can restrain her arms and body while she kicks and screams. Aye, my heart was aching! They were checking her for retinopathy of prematurity – where the retinal blood vessels are disorganized. In most cases this can fix itself, and in extreme cases can lead to blindness. The doctor said her vessels are all formed and totally fine! We’ll just have to follow up in a year because she’s at risk for nearsightedness. No problem!

Sarai hasn’t been weighed in a few weeks, but I’m sure she’s well over 8 lbs. now. We borrowed a carseat insert from Beth that we’ve been using since she came home from the hospital, it gave her a lot of extra support, and she’s finally outgrown that and now uses the regular insert for newborns. I think she’s more comfortable in her seat.

Last night Sarai only woke up ONCE to eat! We both basically slept from 10-8am! But for some reason, the extra sleep only makes me sleepier today. We had a nice nap this afternoon too. What will I do with all this sleep?!

Adam is home tonight. It’s so nice when he’s here. And he’s SO good! He works all the time, comes home, sleeps for 3, 4 hours at the most, then wakes up to give me a “break”! What a doll he is! I try to get him to sleep more, but he just won’t. He’s bouncing Sarai right now trying to get her to sleep. I’m so lucky to have my little family!

We had a play-date with all the Loftus kids this morning! Kate’s got 3 kids under 3, is looking fabulous and doing a wonderful job! She’s like super-mom!

Has anyone else tried to pumpkin latte from Dunkin Donuts? It’s fabulous!

Monday, October 12, 2009

“You my… brown eyed girl! Do you remember when, we used to sing…”

Posted Oct 12, 2009 11:15am
Happy Columbus Day weekend! I don’t know about you, but we had some absolutely perfect fall days down here. Cool, sunny, falling leaves… just beautiful! We took the opportunity to take a couple pictures, I hope you enjoy them! (You might notice I chopped my hair off! I love it!) Sarai is resting right now doing her best Maggie Simpson impersonation (“[suck, suck, suck] pause [suck, suck, suck] pause”), giving me a quick second to update the blog!

We had a pretty easy going week last week, this week will be a little more busy. In addition to our regular early intervention visits from the speech therapist and massage therapist, physical therapy will start and the service coordinator from early intervention is coming by to go over paperwork. Plus we have a doctor’s appointment for shots (OUCH!) and an opthmology appointment. THEN, I’m trying to squeeze in a couple playdates at the end of the week. Whew!

The second appointment with the massage therapist didn’t go too great last week. Sarai has a tough time being in a quiet, alert state on her back long enough to tolerate it longer than a minute. I’ve started to get a little worried about this. I asked the therapist about it, the irritability can be a sign of Cerebral Palsy, and she kind of shrugged and told me I should ask the pediatrician about it. Humph. Sarai isn’t an “easy” baby. So far, she’s not a baby that you can just put down and she’ll be happy. We have to hold her almost constantly, and I’ve said this a million times, but thank GOODNESS for her Moby Wrap! So I’m worried. I sort of look at every little move she makes and think, “Is that normal?! Do other babies do that?! Do other babies look like that?!” It’s kind of driving me crazy. The therapist also said that she sees a lot of GREAT things about Sarai; She holds her head in line with her body, she has good head control, her hands aren’t fisted, she alternates legs when kicking. We decided we’ll skip massage for a week and give her an extra week to grow, and I’m working on massaging her while I’m nursing. That’s going really well. We’ve just got to get her comfortable being on her back!

I’m trying to put a video together of Sarai so you can see her and what she’s up to. I’ll post it on youtube when it’s finished, so stay tuned!

I had such a nice dinner out with friends from work on Friday. Then after dinner, Adam, Sarai and I headed to Brooklyn to spend some time with family. Unfortunately the Yankee’s won their game on Friday, so the Tirado-Yankee-Fans had a ball with that and the Tirado-Mets-Fans just sat with blank stares. But, other than that, it was a nice evening!

Have a wonderful Columbus Day! I hope you’re enjoying a day off!

Sunday, October 4, 2009

“I know you, I walked with you once upon a dream…”

Posted Oct 4, 2009 6:07pm
Hello friends!

I hope you all had a nice weekend! Adam had drills from Thurs-Sunday, but Mom and Katie came down to look at a wedding dress for Katie, so that worked out perfectly. We went to Connecticut to see the dress, so another visit to a new state for Sarai. And, again, she was a perfect traveler!

Sarai had her first visit with the massage therapist last week. What the therapist does is model on a doll, and I actually massage Sarai. However, Sarai has been a little tough the last few days, so we didn’t actually get to do any massage on her. The therapist modeled on a doll, walked me through all the steps, and now I’m practicing until Wednesday when she comes again. Each section of the massage begins with me rubbing my hands together, showing her my palms and asking her permission to massage by saying, “I’m going to massage your legs now, ok?” Geez! How far we’ve gotten from the days of, “You’ll do it because I’m your mother and I told you so!” I’m asking my 3 month old daughter for permission to massage her?! Ok, I’ll roll with it.

I think Sarai is in a growth spurt, this would be the second one since she got home. Basically, she’s been crying like CRAZY when she’s awake, and eating like a monster. (Saturday night she ate for almost 4 hours straight! It was the only thing to get her to stop crying.) Last time this lasted 4 days, and today is the 4th day. She was much better today, and hopefully will be back to her smiley-self tomorrow.

Sarai will be 3 months old in two days! I can’t believe it. Her adjusted age is 1 month. She’s expected to be behaving like a 1 month old, and she’s about there. We do stretches with her 3-5X a day. I’ve noticed she’s a LOT more loose than she used to be, and not just when I’m trying to stretch her. Her arms and legs move easily, both when she’s moving them on her own and when I move her. When I hold her in a standing position, she puts weight on both her legs, and when I move her forward, she takes big steps (stepping reflex). She grasps my hair and sometimes necklaces I wear. When she lays on my chest, she can push herself up with her arms and hold her head for a few seconds. She loves to look around and see what’s going on. She seems to finally have her nights and days straightened out! She still wakes up about every 3 hours to eat, but at night goes right back to sleep. What a relief! We may have heard some “cooing” sounds this weekend, but I’m still holding out for a coo that’s undeniable!

My friend Carmen just had a beautiful baby boy, Gabriel, just over a week ago! Congratulations Carmen! And Kate L just had a beautiful baby girl, Emily, on Friday! Congratulations Kate! Sarai is so lucky to have so many friends!

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! : )

Sunday, August 30, 2009

“Home, where my thoughts escaping, Home, where my musics playing”

Posted Aug 30, 2009 10:53am
Here we are back at home, and it feels so good. Sarai had a rough first night, then was much better last night. Adam said yesterday, “This feels like the first night we’ve been home alone with her,” and it actually might have been.

We have a doctor's appointment almost every day this week. Someone from Early Intervention is coming tomorrow afternoon to begin the process to get Sarai services. All we’ll probably be doing is setting up when and where her evaluation will be, and hopefully arranging for preliminary services to begin in the meantime. We see the pulmonologist on Tuesday and I’m hoping that he’ll tell us to call the company that gave us all the monitors and have them come pick them up. We’re still using the monitor in her bassinette that we borrowed from Beth (it’s called Babysense V), and that’s really all we need to calm our nerves.

So, that’s that! Adam is home for the next couple weeks, and I couldn't be happier! We’re hoping to make a trip to Syracuse, maybe this weekend. I’m working on the video’s and trying to get them on YouTube, so I’ll let you know when you can check them out. I don’t know if I’ll post everyday, or just wait for something interesting to actually happen (I really don’t want you to check this just to read about how many dirty diapers we changed each day!). Love to you all!

Thursday, August 27, 2009

"Doctor, doctor, give me the news I've got a bad case of lovin' you"

Posted Aug 27, 2009 7:17pm
I’m happy to report that for the past two days, we haven’t made a single wrong turn! I think Adam has finally figured out how to use a GPS. ; )

We got up really early today to meet with the developmental neurologist from the University of North Carolina, Dr. Escolar. She was amazing! After 10 years of research, she’s developed a test which details developmental milestones for babies before they would even have been born. Basically, we’ve been told by everyone in NY that we won’t know what to expect from Sarai until she starts to meet milestones like rolling over, walking, etc., which of course won’t come for months from now. Dr. Escolar has been working with infants for years and can say what a baby at 35 weeks gestation should be doing, 36 weeks, and so on. Believe it or not, she’s the first one to do this. She did a thorough exam on Sarai and said that she’s a bit delayed physically, functioning more like a 36 or 37 week gestation baby, and she’s now 39 weeks. So that’s not bad. She noted that Sarai is advanced in tracking objects with her eyes, makes good eye contact and recognizes the sound of my voice. I feel like I could go on and on about this appointment. She was not concerned after examining Sarai and told us to be optimistic. She said that, if she’s learned anything after all these years, it’s not to look at an MRI, it’s to look at the child, and Sarai looks great. They did an MRI after this appointment and Dr. Escolar will compare it to the one at Westchester and make some predictions. With special software, she can see not only the white matter that is damaged (what PVL is) but how the pathways in the brain have been affected (which will tell us more about how she will be affected physically). She was a really neat woman who was just a wealth of knowledge. I feel so lucky that Sarai was able to meet with her!

Sarai has been so restless at night, I can’t wait to get her home and try to establish some kind of schedule. I’m looking forward to the train ride tomorrow and just relaxing for a while. Cindy and Justin have been the BEST hosts! I don’t know if anyone really knows this: Cindy and I went to high school together, but she’s really a friend of Katie’s. It means so much that they invited us to stay with them. It’s really been a home away from home here and we’ve all been so comfortable. We’ve had great dinners, talks and laughs. Thanks so much guys!

(Remember, probably won't be a post tomorrow night. But don't be shy about comments! I check all the time to see them! (You're included, Bunny!))

Wednesday, August 26, 2009

"Red beans and rice, I could eat a plate twice. So nice. So nice. So nice."

Posted Aug 26, 2009 7:22pm
Well, our week is starting to wind down.

The MRI that Sarai was supposed to get this morning was cancelled because the machine was down. The MRI is with a doctor at the University of North Carolina who is doing a study. I’ll write more about it after we get the MRI and I know more, but I know they are the only ones doing this kind of MRI in the country. We’ll meet with their neurologist at 9:30am, and have to be back for the MRI at 4:30. Kind of a bummer for our scheduling, but I’m glad to be able to do it at all.

We met with the neurologist at Duke today. He did a quick evaluation. He was optimistic about Sarai’s future. He said if Sarai has any difficulties they would be more motor related, most likely a delay in when she’ll walk, and that the PVL shouldn’t affect her cognitively. He encouraged us to stimulate her as much as we can, keep doing massage (which I try to do daily) and be sure to follow up with early intervention. He said the best results for kids who get the stem cell transplants is with the kids who are physically and emotionally stimulated. He said the more we talk to her the better; she definitely has a head start there!

We made it to the book store at Duke today and got to drive around campus a little. What a BEAUTIFUL campus! Adam said it’s what he thought Harvard would look like. I’m sure Sarai will really enjoy going to college there. : )

We made Mexican lasagna and rice and beans for dinner at Cindy’s house. YUM! Tomorrow will probably be a long day, and then we’ll be headed home before we know it! After tomorrow I’ll probably take a little break from the blog for a couple days because Friday we won’t get home until probably midnight. But I’ll let you know how tomorrow goes. Love you all! Thanks for all your prayers!

Tuesday, August 25, 2009

"Muskrat, muskrat candlelight… Doin' the town and doin' it right "

Posted Aug 25, 2009 9:00pm
(How did I forget that Muskrat Love was a song? Thanks Melissa!)

Happy day today! Sarai has her cord blood back and is a happy camper!

Our day was off to a rough start. The GPS didn’t work because it had been left on in the car all night. We weren’t sure we’d remember the way to the hospital, but we thought we could figure it out. As Adam pulled the rental car (it’s a Jeep Liberty) out of the driveway, he backed into a HUGE ditch in front of Cindy and Justin’s house. If the jeep didn’t have 4 wheel drive, I’m pretty sure it’d still be stuck there. After we finally got out of the driveway, we made every wrong turn possible, going through a police checkpoint twice and even getting on the highway in the wrong direction. It’s just another example of God’s miracles that we made it to the hospital on time.

The doctors and nurses at the hospital were all wonderful, exceptional in fact. The infusion went well, it was quick, and Sarai was hardly fussy at all. They were dipping her pacifier into a sugar water that the nurse said acts like a narcotic for infants. Adam wanted to bring some home with us, it worked like a charm. It’s funny. They told us that the chemical used when the cord blood cells are frozen, DMSO, would make Sarai’s breath smell like corn. They weren’t kidding! It was almost instantaneous. They said our whole room will smell like corn tonight, and this will last about 24 hours. Ugh. I miss her baby smell already. And I know she’s sick of the “corn breath” jokes.

We will stay in touch with the doctor down here through e-mail. She’ll want to see her either when Sarai is 6 months old, or at about a year for a second infusion. We asked today what results they have seen with cord blood infusions and PVL. They told us that they have seen myelin regeneration in the brain, and that the earlier the infusion the better result. Very encouraging news for us!

Sarai was a huge hit today, everyone loved her! She was weighed before the infusion and is up to 6 lbs! Yikes!

Tomorrow she has a “special” MRI and we’ll meet with their pediatric neurologist. The MRI that they will do will tell us more about the damage to her brain than a normal MRI will, but we won’t know the results for about a month or so. They are the only people doing this kind of MRI in the country.

We had a great day today! I’m feeling so excited! Like I’m on the cutting edge of science in this field! I still can’t believe I’m here or that they accepted us into this study. We asked today how people find out about the infusions and the research they’re doing at Duke, and it’s basically by word of mouth. They haven’t advertised or published much because they aren’t sure of the results yet. I just can’t believe our luck. We met a woman and her son today, also getting an infusion. Her son has cerebral palsy, and he’s 11. They banked his cord blood 11 years ago and are just realizing they could use it now. It’s just amazing what they can do.

Hail Mary’s!

Monday, August 24, 2009

"I would do anything for love, anything you been dreaming of...."

Posted Aug 24, 2009 9:19pm
Here in North Carolina, things are going well. Sarai had a pretty restless night, to be expected. Poor baby can’t get used to one place before we move her to a new place. But we were up early, gave her a bath and she was ready to go.

We went to Duke today for a quick visit. The hospital is beautiful and everyone is super nice. They took Sarai in for a weight check and a quick physical. They asked a bunch of questions about her health history, yadda yadda yadda.

The nurse reminded us today that, although they have seen promising results in animals, this study is still very young and they aren’t sure what the results will be. Even if everything goes great and Sarai doesn’t have many or any symptoms of cerebral palsy, there is no way to really prove that it’s because of the cord blood. Sarai will probably come back in 6 months or a year for a second infusion. The children in the study so far have just come back for their second infusion 2 to 3 months ago, that’s how new the study is. So all we can do is pray and hope, for Sarai and all the children in this study. Soon there will be an efficacy study, where they will infuse 50% of the children with their cord blood and 50% get a placebo. We’re glad to get into this before we have a chance that Sarai wouldn’t get her cord blood.

Tomorrow we’ll have a longer day at the hospital. We go in around noon again, they’ll do the infusion and monitor her for a while. The cord blood is frozen with a chemical called DMSO to prevent the blood from crystallizing. When the blood is thawed, most of the DMSO is removed, but some will still remain. The only risk with this procedure is Sarai could have a reaction to the DMSO, but she will be monitored closely. They see this in less than 1% of the children.

Adam and Mim got groceries tonight and Mim and I (mostly Mim) made dinner for Cindy and her husband Justin, and Cindy’s sister Amy and cousin Meredith. It was a fun evening. A little snippet of tonight’s conversation:

Sarai: (makes cute cooing noises)
Justin: She sounds like a little muskrat!
Cindy: How do you know what a muskrat sounds like?
Justin: I don’t, that’s what I think one would sound like.

Sunday, August 23, 2009

"Things look bright and I feel alright yeah I'm heading south ..."

Posted Aug 23, 2009 8:51pm
Here we are in North Carolina!

Adam and I got up at 3:30 to try and make it to Uncle Tom and Aunt Theresa’s by 5:30. We got off to a bit of a late start because Sarai took her time with her breakfast, but we made it to the train on time. We had a nice trip. Sarai was great on the train until right before we got off, then she had to declare to everyone in our car, “I am baby, hear me ROAR!” Up until then, the time went pretty quickly and we had a nice relaxing trip.

Cindy met us at the train and brought us to get our car (what a doll!). We’re at Cindy and Justin’s now in Durham. We got real North Carolina bar-b-que for dinner and it was delicious! We’re all just relaxing now, ahhhhh. Busy day.

Tomorrow we head out to Duke around noon. They’re going to do a little physical on Sarai and try to do a blood draw. I think they’re also going to get her detailed history. I doubt we’ll have to be there for too long, but really I have no idea. I think Tuesday will be a longer day, that’s when they do the infusion of the cord blood.

Mom has turned into “One-eyed Albin” with the video camera! She taped every train coming into Newark before ours finally arrived. Be prepared to watch lots of video of U.S. landscape as seen from inside our train.

Thanks for all the anniversary wishes!

Saturday, August 22, 2009

"But of all God's miracles large and small..."

Posted Aug 22, 2009 7:23pm
Just a few more hours and we’ll be out of here! We’re just about packed, just a few final things to put together. There is just no packing lightly for this trip. Sarai has to get showered and prettied up. (The prettied-up part won’t be any trouble at all!) She’s resting comfortably right now.

Mom’s at Uncle Tom’s and I heard she made it all the way there without going over the Tappan Zee bride, not even once! She’s practically a regular around here now!

So I’m SUPER EXCITED! I still can’t believe how this has all worked out, and I have all of you to thank for your prayers! To think of how things can change in just two weeks, it’s amazing. Unbelievable. A miracle!

I’m sure we’ll be posting daily from North Carolina from La Casa de Cindy. Thank you again for your prayers. You all are just amazing.

We love all of you!

Friday, August 21, 2009

“Can’t you see the sunshine, can’t you just feel the moonshine…”

Posted Aug 21, 2009 5:38pm
Sorry I didn’t write yesterday, but absolutely nothing happened that was worth writing about.

Except, I got a haircut! I was sitting here thinking, we’ve got so much to pack already, and this hair has got to go! So, down the street I went and about 5 inches came off. Ahh, it feels so good. It’s too hot for long hair, I can’t be bothered to straighten it. Now with it shorter I just keep swishing it on my neck…. Enough about me, this isn’t my blog!

Sarai is sleeping better and better. The nurse came today and she gained another 2 oz’s, so she’s up to 5 lbs 10 oz! Everyone is happy with her weight gain. The nurse said today she’s only going to come once more, honestly I’m not sure why she was coming in the first place. The hospital probably referred us because of all the equipment Sarai left with, but like Katie said, Sarai has been acoustic since last Saturday (totally unplugged!). Anyway, it’s just nice to have someone stop by and tell me how great she’s doing. She’s very impressed with her movement, head control, how alert she is and how well she focuses on you when you talk to her. I’m pretty impressed myself…

Adam had to do an extra shift today, so Sarai and I have been home alone since last night. I gave her a bath all by myself! Whoo-hoo! I’m getting to be a pro… look out June Cleaver!

Big packing day tomorrow! Christin is going to come up and help look after Sarai so I can get some things done, what an angel!

Enjoy your Friday night’s everyone!

(Who's going to be the 100th visitor??? The 100th visitor wins an autographed picture of Sarai!)

Wednesday, August 19, 2009

"In my mind I'm goin' to Carolina..."

Posted Aug 19, 2009 8:08pm
Sarai went back to the doctor today. She is weighing in at 5 lbs 8 oz! Whew, this girl is getting some good donuts!

Travel plans for our trip are almost done. Like Mom said, we’ll be staying with Katie’s friend Cindy in Durham. Thanks, Cindy! Uncle Tom is letting us use his driveway as a used car lot and driving us to the train station. Thanks, Uncle Tom! Mom’s been busy making Sarai some travel onesies. I’m pretty sure she’s using Sarai as a billboard in support of Duke and cord blood banking. I can’t wait to see what they say! Thanks, Mom!

My friend Erin had her baby boy yesterday and is already home from the hospital! Congratulations Erin and Yosi!

Christin came out to spend time with our little peanut today. Of course Sarai slept like an angel the whole time she was here, so after she left she was into one of her diva moods. But she’s sleeping like an angel again. I should run and rest a bit while I can!

4 days to go! Duke, here we come!

Tuesday, August 18, 2009

"CBR me.... ASAP!" Aug. 18

Posted Aug 18, 2009 8:21pm
Sarai is getting excited about her big trip to Duke this weekend. It’s all she can talk about. Adam and I have been scrambling to get all the paperwork together that we need. He’s going to the hospital tomorrow morning to get a copy of Sarai’s head ultrasound and MRI to bring to Duke. Tomorrow, Sarai has an appointment with her doctor, just to make sure she’s gaining weight.

So, I was chatting with my cousin Amy via e-mail about cord blood banking and thought I’d write to you guys about it tonight.

If you are pregnant, you’ve probably seen lots of advertisements for cord blood banking. There’s lots of banks, the two big ones are Cord Blood Registry (CBR) and Via Cord. Banking cord blood is expensive, and CBR and Via Cord are probably the most expensive (around $2100, but you can get small discounts). You can shop around and find banks that will charge $1500, or even closer to $1000. My advice to you is, this is not a place where you want to worry about saving money.

Talking to my cousin Julie was what finally made me choose CBR. She told me they were doing the most research, and she was right. I called Duke on my own because of an article I read, but before they got back to me, I called CBR to see what they knew about research with cord blood and PVL. They got right back to me and a wonderful woman named Sherry was just about to put me in contact with Duke herself. She knew all about what they were doing there, what doctor I needed to contact, and knew that CBR had sent cord blood out to Duke for babies with PVL.

When I got in contact with Duke, they said they didn’t know if Sarai would qualify, and that a lot would depend on how many stem cells were in her cord blood and how it was stored. When I told them her cord blood was with CBR, they immediately sounded relieved.

The people we’ve been in contact with at Duke have been exceptional. And Sherry at CBR almost feels like a sister. She’s as excited about this as I am. When I talk to her, she says, “Now, I need this paper right away, then I need you to take a nap. I’m worried about you!” She actually ended our last phone call with an, “I love you!” She’s just been such a sweetheart.

Please don’t be dissuaded by doctors and their opinions about cord blood. Most of them really aren’t educated about what research is being done. As you know, I was told that research wasn’t even being done with animals and PVL, and we all know now that’s not true. They really are beginning to do amazing things with cord blood, and what they can do in the future will be that much more amazing.

Bank cord blood. Better safe than sorry.

Monday, August 17, 2009

"I got sunshine on a cloudy day... when it's cold outside, I got the month of May..."

Posted Aug 17, 2009 7:27pm
Busy, busy, busy!

Looks like Sarai will be going to Duke on Sunday! I can’t believe how fast this is happening. I think the woman from the cord blood bank is as overwhelmed as I am! We have lots of paperwork to fill out. We found out this afternoon we had to get Sarai’s blood drawn and sent to Duke, so we RAN out the door to the hospital where the doctor made an appointment for us, and RAN to FexEx to get that over-nighted.

Mom decided to go home for a couple days so she can gear up for the trip. Yep, we’re taking her with us! (Thank goodness, I have no idea how to travel with an infant! I’m pretty sure you mom’s out there never would have pictured bringing your baby on a plane or train ride when they were home from the hospital for only 3 days!) I think we’re going to take a train; more reliable, room to move around, we won’t lose our luggage. We’ll probably look more in to that tomorrow when we get a confirmation that Sarai’s cord blood will actually be able to be released in such short notice. But it should be fine, we’ve sent out everything they’ve asked for quickly.

Sarai is absolutely exhausted. Taking her blood today was not easy. They had a hard time getting a vein and she was screaming for quite a while. Tired her out! She slept better last night, she’s starting to get used to things. So now that she’s used to things, taking her down south will really throw her off. Aye, poor baby girl!

(P.S.: We're leaving for Duke on our anniversary!)

Sunday, August 16, 2009

our miracle...

Posted Aug 16, 2009 9:41pm
You are not going to believe this…

I hardly believe it…

I got an e-mail from the doctor at Duke, and they want to infuse Sarai with her cord blood either Aug. 25th or Sept. 1st! This means we could be leaving in less than a week! I have to make about a million phone calls, arrange travel, reschedule doctors appointments… and try to remember to breathe! I don’t know how to travel with an infant!

And to think the doctor told me they're not even doing any work with PVL and stem cells in animals. Boy was he wrong and boy am I glad I didn't listen! Adam convinced me to bank the cord blood, Julie sent the article to get this ball rolling. I don't even know how to say how thankful I am.

Thank you all so much for your prayers, they’re obviously working! I’ll be in touch! (So much for a couple days away from the blog. : )

"Que sera, Sarai! Be happy and please don't cry! You're the apple of Grandma's eye!..."

Posted Aug 16, 2009 9:14pm
Oh we are so happy to have Sarai home! She slept a little better last night, but still wasn’t comfortable sleeping on her own. Hopefully it will just get a little better every night. We seem to have ditched the monitors from the hospital and are just using a monitor that lays like a mat under her bassinette. It goes off if it senses that she isn’t moving for 20-30 seconds and I think it’s fabulous. No false alarms.

A visiting nurse came to see her today. I didn’t realize that we would have a visiting nurse, but I guess someone will be stopping by to check on her, weigh her, and I don’t know what else. The lady today wasn’t her regular nurse, so she wasn’t sure how often we’ll be seeing the “real” nurse, but maybe we’ll find out this week. I asked her today about Sarai having trouble sleeping and she said, like the doctor, that it will just take time for her to adjust, could be a couple months. Luckily, Adam is here tonight so we can share some of the midnight hours with her.

I had a nice nap tonight while Mom made a delicious dinner. No news today on Duke or anything. Now with Sarai at home, I don’t know if I’ll be posting every night (you probably don’t want to hear about dirty diapers and making donuts every day, do you?). But if there is news, or if I just feel like rambling about my beautiful daughter, you know where to find me!

Saturday, August 15, 2009

"Splish splash, I was takin' a bath..."

Posted Aug 15, 2009 6:18pm
Did anyone ever tell me that I wouldn’t sleep once the baby came home? Actually, I think everyone did and they ALL couldn’t be more right! Now try having your baby home on a monitor and see how well you sleep. Not good.

Sarai was not herself last night. She wouldn’t settle in, unless she was snuggling with me. I tried to let her sleep in her bassinette, but she really didn’t sleep a wink all night. She had her first doctor appointment today and that was GREAT. Her doctor was so sweet and very excited about the cord blood possibilities. We talked to the doctor about Sarai’s difficult night and she basically said, “Of course she was upset! She left the only home she knew!” But she’s so much better today. She slept one stretch for 5 hours, which means she’ll probably sleep less tonight, but I’m just glad she’s sleeping. So far today we haven’t had her on the monitor. Seriously, that thing was going off every 1-2 minutes. We had it on her in the doctor and the doctor thought what we thought, it’s not giving correct numbers. It was saying her oxygen saturation was 60% and there she was pink, smiling and wiggling around. Our friend Beth let us borrow a sort of monitor that goes under her mattress so I think we’ll try that tonight. We had her on it for a nap today and I think it’s going to be the reassurance we need without the overkill.

Promising news from Duke! I got an e-mail last night from the doctor doing the study. They are infusing cord blood into babies with PVL within a few months of life. She gave me quite a bit of other information; cost, travel time, etc. They’re getting the cord blood report to see if Sarai will qualify. I’m afraid to get my hopes up… but they’re sort of up!

Thank goodness mom is here! She let me take a nice nap today, twice. I feel like I have so much to do it’s hard to rest, but it felt good. We’re going to get Sarai into her first bath in a few minutes. Wish us luck!

Friday, August 14, 2009

"Now I want you to click your heels together three times and say, “There’s no place like….”

Posted Aug 14, 2009 9:31pm….”The NICU at Westchester Medical Center!”

No wait, that’s not how it goes….

HOME! HOME! HOME! There’s no place like HOME! And that’s exactly where Sarai is right now!

Almost two months after my first hospitalization, just about 6 weeks in the NICU, at 5 weeks and 5 days old, on a Friday afternoon during rush hour on Aug. 14, 2009…. Sarai was finally discharged from the hospital.

We got there today totally not expecting it. I was afraid to even hope for Monday. But the doctors decided that with a pulse oximeter and some oxygen just in case, we could come home and here we are. Sarai has enough equipment with her that we might just as well be in the NICU, but that’s fine by me. She’s on prilosec and caffeine. We give them to her once a day. So far we’ve had her on the oximeter to monitor the de-sats and haven’t even bothered with the apnea monitor. Honestly, the oximeter goes off enough that we have to check her every 5 minutes anyway, so the apnea monitor just feels like overkill. We’ll see. Her first appointment with the pediatrician is tomorrow morning and we have lots more follow ups in the next month.

AH! Where else can I begin? I can’t believe she’s here, I’m totally in shock. It’s about 10 o’clock right now, the usual time I write the blog and I’m already SO much more exhausted than usual. I think my heart has been racing all day.

Before we even got to the hospital my day was off to a good start though. I kept calling around trying to find someone with information about Duke and cord blood. I called a number at Duke and was transferred to the right office! They took Sarai’s info and asked that the cord blood report be sent to them for evaluation. They weren’t sure if she’d qualify for the study, but they’re looking into it. I just don’t know why they wouldn’t try it. Be prepared, we may have to start a giant e-mail campaign to get Sarai into this study! It might be a few weeks before I hear back from them. I’ll let you know!

John and Sara came over to drop off some very thoughtful, and beautiful, gifts! Thank you so much, and to Ajene too! Sarai is such a lucky girl, and we are such a lucky family!

We’re settling in. Mom is here, thank goodness, and has been a big help already. I woudn’t be able to update the blog without her here! Thank you all for your thoughts and prayers, they’ve all helped to get Sarai home. Now let’s hope they call and we can get her into this study!

Thursday, August 13, 2009

"Livin' it up at the Hotel California..."

Posted Aug 13, 2009 10:04pm

Not too much to report from the NICU today. The carseat test that Sarai failed, then passed, then failed…. Today they decided that she passed and won’t have to repeat it. But, that could change depending on who’s working tomorrow. I won’t get my hopes up.

The newest news on when she’s coming home is Monday. Again, as a wise NICU mom (Megan!) told me, don’t believe it until they’re on their way out the door. They said they want to see her with 3 days of no de-sats. I don’t know if that will happen right now. They decided to go ahead and try her on prilosec today. I think, and her nurses think, that the de-sats are because of pre-maturity and the PVL and she’s just going to outgrow them. But the bottom line is when she de-sats, she doesn’t change color (she’s always pretty and pink!) and she has no apneas or brady’s (drops in heart rate). She’s a mystery. Her nurse tonight told me, “When is she going home? I was telling her today, you know, this isn’t the Westchester Hotel!” Seriously.

I sent an email to a research person at Duke University to ask about their research with cord blood and what that might be able to do for Sarai. I didn’t hear back from them today. I also called and left a message with the cord blood bank people, to ask if they had any specific info on where I can call. They certainly did a good job of telling me how cord blood can do ANYTHING, now it’s time to show and prove! This will probably be the beginning of about a million more phone calls, but we’ve got to start somewhere!

We got to sit and talk with the neurologist today and ask some questions. And mom got to meet him. He’s really great, so much more positive that Dr. Doomsday (but Eeyore would be more positive). He will be the neurologist to follow Sarai after she leaves the hospital. I’m very comfortable with him and he has a great reputation. We asked him about the cord blood and if he’s aware of any treatments for PVL. He isn’t, but said that if we can find something, the sooner the better.

So, a few more days and we’ll have our little girl home. Her bassinette needs a baby!

Wednesday, August 12, 2009

"Baby I'm amazed by you...."

Posted Aug 12, 2009 7:59pm
Buenos noches!

Sarai spent most of the morning strutting around the NICU with the crown she won last night. Sheesh… what a diva she’s turning out to be!

I called this morning to see how she did on her carseat test last night and the night nurse told me she passed, YAY! Then we got to the hospital and the day nurse told me that she didn’t actually pass, BOO! Then we were told that she won’t be coming home tomorrow after all. BOO, again. They want to monitor her more with the dips in her oxygen. (I keep calling them “dips,” they’re actually called desaturations, or de-sats.) The monitor we will bring her home on doesn’t pick up de-sats, and they want to make sure it’s safe to bring her home. I do too.

They did blood work today and found that her caffeine level was low (probably because she’s gained so much weight, she’s 5 lbs 5 oz now!) so they brought that up today. That might help with the de-sats.

I ran into Dr. Doomsday (the attending on Sarai’s team) this afternoon. He’s the one who told me about the PVL. I guess he saw me today and decided to take the opportunity to shut out any ray of hope I have for Sarai. So many people are so positive about how well she’s done and what the future can hold for her. I totally say, FORGET HIM! Mom said tonight, we’re going to send him a card of Sarai jumping and laughing on her first birthday and just write “SURPRISE!” on it! I say, absolutely! He clearly has no idea how strong my will is or how much we all love Sarai.

Just watch, Dr. Doomsday. You’ll be amazed!

Tuesday, August 11, 2009

"Every beath you take.... [yadda yadda yadda]... I'll be watching you."

Posted Aug 11, 2009 9:48pm
Hi everyone.

We talked quite a bit today with one of the physicians assistants about Sarai coming home. I think I mentioned a while back that she’s on caffeine. We were told today that we can keep her on the caffeine and have the option of bringing her home on a monitor, or have them stop the caffeine and keep her in the hospital for another 7 days to see how she does. We decided to keep the caffeine and get the monitor. The doctors have told us they don’t actually think the monitors are really good for anything, they usually just set off false alarms. I think that the bottom line is, they wouldn’t be sending her home if she wasn’t ready. She’s had no apneas in ages and has never had a drop in her heart rate (a “brady”). But we’ll take the monitor just to be sure.

As you know, Sarai had her carseat test today. Unfortunately, she didn’t pass it the first time around. She began to dip a bit in her oxygen, and the nurse put some oxygen below her face to boost her back up. She’s having another one right now. She’s doing better, but had a couple small dips. The nurse told me that since that’s normal for her and especially since she’s coming home on a monitor, she’ll probably pass the test.

We are still waiting to hear from the neurologist for official word on the MRI. Unofficially, we’ve heard that it confirms the PVL and doesn’t say much more.

There was a Miss Preemie NICU Pageant hosted by Donald Trump today. Simon Cowell and Sharon Osborne were among the celebrity judges. Sarai was voted most beautiful, winning the “onesie” competition and getting “best hair”! You go girl!

We were busy running some last minute errands today and I think we’re about ready to get our little beauty queen home!

Monday, August 10, 2009

"Just another manic Monday"

Posted Aug 10, 2009 9:29pm
Just another manic Monday… but a good Monday.

The neurologist called me last night at midnight to tell me that the EEG came back normal! That means Sarai has normal brain function and didn’t have any seizures. She has had a vision and hearing test and those both came out normal as well. Her MRI for today… what an ordeal. It was scheduled for 12:30, they pushed it back 2:00. By 2, they said, probably at 4:00. At 4, they said after 5:00. At 5, they said get here, STAT! Poor baby girl couldn’t eat anything for 6 hours before the test, so they stopped her food at 5:30 this morning. She was getting sugar and liquid through an IV, but she was STARVING. They thought they might not have to use anesthesia for the MRI, but they ended up giving her a little through her IV. But by the time the test was over, she was screaming for food and raring to go. I’m sure she was really happy to have her first bottle after 15 hours without one!

We’re coming to the end of our stay in the NICU. Before Sarai comes home, she has to pass a carseat test. They put her in the seat to make sure she can maintain her oxygen for at least an hour. They told us today to bring in her carseat tomorrow. I’m excited!

Sarai had a long day of testing and not being able to eat, but she came through like the champ she is. We got to snuggle her quite a bit. My fever broke last night. I made it out to the doctor first thing this morning. A very understanding doctor decided to see me even though I didn’t have an appointment (I showed up and BEGGED!). He gave me the go ahead to see Sarai and gave me an antibiotic that doesn’t interfere with making donuts.

Grandma Tirado and Titi’s Michy and Sharon all came out today, but the crazy testing schedule didn’t allow them to spend much time with Sarai. : ( But we were glad to see them for a little while! Mom and I made it to scrapbooking. Mom even made a couple pages for Sarai’s book! The book is really coming along.

We drove home through a terrible rain storm. There was crazy thunder and lightening and lots of cars pulled off the road. But, as we’ve been doing for the past 5 weeks, we weathered the storm!

Happy 5 weeks old, Sarai!

Sunday, August 9, 2009

... Every cloud has a silver lining....

Posted Aug 9, 2009 3:48pm
Hi everyone.

I want to tell you all thank you SO MUCH for your uplifting messages and your encouragement. Thank goodness for this blog! It’s been a rough couple of days and I’m glad to have been able to tell you all what was going on, without having to explain it over the phone. Talking about all of this has made Adam feel better, but I’ve really just been very happy to let the website do the talking. We all deal with difficult news in different ways.

I was hoping to wait to post this until I got the results of the EEG that was done on Friday, but Katie told me I should really let you guys know what’s going on. We’ve had a pretty good weekend and have gotten some more positive news. We met with the neurologist on Friday. He looked at the ultrasound and examined Sarai on Thursday night. He said her reflexes are good and her muscle tone is also good. He measured her head to compare it to the measurement after birth, and her head is growing at a normal rate. (Sometimes when the brain isn’t developing, the head doesn’t grow as fast.) Like I said, we don’t have the results of the EEG (test to measure brain activity), but the doctor on Saturday believes that it won’t show anything abnormal either. (Prayers please!)

When I first got the news about the PVL and cerebral palsy, the first thing I said to the doctor was, “Is there anything they can do with stem cells?” Adam and I decided, about 4 days before Sarai was born, to bank her cord blood. The doctor responded, “Absolutely not. Studies aren’t even being done on animals at this point.” [Cousin] Julie did a little research and then so did I and we both found that that’s not the case. If you’d like, go here…

All this gives me a lot of hope. I know we’ll have a long road, but we’ll be getting her every treatment and therapy they’ll give us. For now, Sarai is developing perfectly normally. She’s started taking all her feeds by mouth, they took her feeding tube out. The doctor on Saturday said we’ll probably be bringing her home by the middle or end of this week.

Mom, Katie, Bill and Steve were all here visiting this weekend and mom will stay for the next few days, maybe the week. Thank goodness they were all here. This morning I woke up with a fever and was unable to go to the hospital for the first time. Sarai is having an MRI tomorrow (more prayers please!), if I can’t go, at least Mom and Adam can.

So, we just take things one step at a time from now on. We really can’t predict what will happen. We’re just giving Sarai all the love in the world. Like they told me, she’s a champion!

Thursday, August 6, 2009

Aug. 6

Posted Aug 6, 2009 8:29pm

Hi friends and family.

Today’s post isn’t going to be a happy one.

I got to the hospital this morning and the doctor told me that they got the results of the head ultrasound. The ultrasound was abnormal. Sarai has PVL - Periventricular leukomalacia. It is damage to the white tissue in the brain and appears as cysts. The doctor told us that she can very likely develop cerebral palsy from this condition. Cerebral palsy is a spectrum disorder. It can have very severe physical and neurological effects or can be very mild. They aren’t sure how much damage there is and there is no way to tell what she will be able to do physically or neurologically, only time will tell. Typically, cerebral palsy doesn’t show any signs until 6-9 months of age. So, we begin a huge waiting game.

The doctor was almost as shocked about this news as Adam and I were. NO ONE saw this coming. This usually effects babies born earlier than Sarai, she’s been developing so well and doing everything they’ve asked of her. I feel like I’m in a dream. I don’t know what to think or do.

Sarai will have an MRI next week. We will then talk to the pediatric neurologist about the results and we might get a little better idea of what’s going on.

I might take a couple days off updating you guys on the blog. I know that your thoughts and prayers will be with us, and we appreciate them all. Today was the hardest day of my life. All we can do is look forward, hope and pray.

I’m praying for a miracle.

Wednesday, August 5, 2009

"Doin' it all for my baby... cause she's as fine as she can be!"

Posted Aug 5, 2009 8:12pm

Sarai had a pretty good day today. Less dips in her oxygen (so I got to snuggle her quite a bit!).

When we walked in, they were just beginning a head ultrasound. They do two of them for preemies; when they’re just a day or so old, and when they’re a month old. They’re looking for bleeding in the brain. Her first one was normal, we’re still waiting for the results for the one today.

The doctors blew through rounds today with me forgetting to ask about prilosec. I meant to bring it up. I’m really anti-medication for the most part, but I really was hoping they’d just TRY it, and nix it if it doesn’t do the trick. But I’d like to try SOMETHING. I talked to the nurse practitioner who was on today, and she made a note to bring it up tomorrow at rounds.

The physical therapist worked with us again to do infant massage. I keep reading about the benefits of that for preemies, so I’m really glad they’re helping us with it. Sarai is starting to get into it and be more relaxed during massages. The therapist also did a little evaluation on Sarai and told us that she will probably qualify for early intervention. So after she comes home, we may have a physical or occupational therapist come to the house 2-3 times a week to work with her. Whatever will help her grow, we’ll do it!

Well, I haven’t flashed anyone in days, I think the NICU staff is grateful. It IS a unit for babies, we should really work to keep it G rated.