“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!

"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!))

"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!

"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!

"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.

"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!

"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!

“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!)

"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!

"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.

"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!)

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!

"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!

"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!

"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!

"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!

"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!

"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!

... 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…

www.msnbc.msn.com/id/23572206

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!

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.

"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.

Aug 4th

Posted Aug 4, 2009 7:18pm
Sarai is officially a monster! Weighing in at 4 lbs 15 oz, she’s outgrown her preemie diapers! Even in the outfit she wore today, if she were standing, they would have been high waters!

They decided to hold off on giving her prilosec. (I’m an anti-medication person, but I really wish they would just try it and see if it works! I might suggest that tomorrow.) She dipped a little in her oxygen, but not low and she recovered herself.

The furniture is here and it’s marvelous dah-link! I was up last night ironing her bedding and wiping down walls until midnight! I’m anxious to get to putting some clothes away (finally, a place to put her things!).

Ding-dong… the cereal’s gone!

Posted Aug 3, 2009 8:39pm

I apologize if yesterday’s post was a little jumbled and nonsensical. But I was upset!

Sarai got a promotion in the NICU last night, moved back to “special care!” That’s where she was a week and a half ago before we had to ship out because of her inconsistent oxygen levels. Ahhh, it’s good to be home!

The little peanut is still taking half her feeds by bottle or… hu-hum, donut. This morning she was having quite a few dips again. Unfortunately, last night’s nurse either read the orders wrong, or disregarded them, and attempted to give all her feedings to her by bottle, with rice cereal! So she was exhausted this morning, and they think that’s why she was having a hard time with her oxygen. So, today she was back to a regular feeding schedule. They decided to nix the rice cereal because it didn’t seem to be making much of a difference. (I say, good riddance! It’s like telling someone they have to finish a bowl of tomato soup with a FORK!) She had dips most of the day, not real low and she doesn’t get color changes in her face like she used to, but tomorrow they may try to give her prilosec. Wouldn’t it be nice if that was the answer?!

Furniture tomorrow! I just made a trip to Babies R Us and got mesh bumpers (thanks Beth and Aunt Kathy for the advice).

Sorry I haven’t posted pics in a couple days. I’ll try to do that tomorrow!

“Baby love, my baby love… been missin’ ya… miss kissin ya”

Posted Aug 2, 2009 5:30pm

After a little debate last night, the NICU staff decided to keep Sarai-sita on bottle feeds for every other feeding. With thickening her bottles and having less of a rest in between, she didn’t finish her bottles last night. They decided that she’s been tiring out, and that’s why she had more dips in her oxygen yesterday than the day before. So, much to my dismay, they hardly let me hold her at all today. : ( So I kind of left the hospital feeling like I didn’t get to visit at all. Grrrrr….. not a happy mama!

But I’m almost finished with “The Lucky One”, a book on loan from Amy. Thanks Amy, it’s a great book!

And tonight is my favorite HBO show night!

And tomorrow I’m getting all of Sarai’s bedding washed so it will be ready for her crib, which comes on Tuesday! Is it true that babies don’t use bumpers anymore? Is that until they’re only a certain number of months old? Should I not bring them to wash?

(I’m trying to look for good things in this day!)

August 1, 2009

Posted Aug 1, 2009 8:33pm

Nothing really interesting to report today. Sarai took both of her bottles last night, and as with the past few days, did a great job with her donuts. They had increased her bottle/donut feeds to every other one, but her bottle at 6:00 was tough for her, she got really tired. Her nurse tonight just told me they went back to every third because she got so tired (geez, give the girl a chance!). Like I said yesterday, they’re putting rice cereal in her bottles and that makes it really hard for her to suck on her bottle. I was surprised she finished the two last night.

Her weight is up to 4 lbs 12 oz! Seriously, she’s getting to be a giant! A friend of mine who just brought her son home a couple weeks ago, after being in the NICU for two months, just told me he weighs 5 lbs 3 oz. Sarai is going to eat this kid for lunch!

Have a nice weekend everyone!