Happy Birthday Shayna!

And congratulations to your parents for getting through your first year.

A year ago today Nahum and I were enjoying a quiet first day with our new baby girl Shayna after a 12:12am birth.  It was a magical and awesome day for both of us.  Nahum was lucky enough to experience that instant and overwhelming love for another human being.  With the first glimpse of her head, he knew he would do anything for his daughter.   My first thought was, "it's over," as I was exhausted.  For me, Shayna just was and always had been.  It felt so natural for me to have this little person to care for and love.  The details of that care were something both Nahum and I had to work out together.  Luckily she was an easy baby.  She fussed when something was wrong (wet, hungry, tired), we took care of it and she was happy again.

With all that has happened between this day and that day last year, Shayna is still the light of our lives, the greatest blessing we have ever experienced, and brings us more joy than we ever thought possible.

Here's a brief history of the last year:
Feb 18, 2009 Shayna's due date comes and goes with now sign of a baby emerging any time soon.

Feb 26 1am: Labor induction begins because her estimated size is 9lb10oz (+/- 15%)
            6:30pm: Pitocin is hooked up.

Feb 27 12:12am: Shayna enters the world at 8lb13.5oz and 21.5in.

The next couple months are a wonderful, if slightly sleep deprived blur.  Shayna nursed well, complained when something fixable was wrong, and began sleeping through the night at 8 weeks.

March 11 around 3am: meets Grandma Melinda and Grandpa Michael from Pueblo, CO for the first time as a tired Ima dumps a baby into their arms so she can sleep a little.

April 2: Gave Aba her first smile.

April 16: Behaves beautifully on her first plane ride to Berkley, CA.  We spent a beautiful week meeting some of Nahum's old friends from the area and seeing some transplanted Boulder friends as well.   We also discovered on this trip that Shayna gets hot very easily and will tell us.

April 17: Meets Grandma Carole from Death Valley, CA.

April 26: First hike.  To the Cascades with wonderful friends.

May 2: Surprise herself and her parents by rolling over when she doesn't want to sleep.  Unfortunately we only saw the results and not the action.

May 7: Laughs out loud.  What a beautiful sound.

June 2: Put Shayna in daycare for the first time with great plans of getting much done.  I only lasted 1hr before I had to drive back to check on her. She stayed another 1 1/2hrs after than and Aba picked her up.

June 15: Ima officially goes back to work part-time (24hr/wk).  Aba takes Shayna to daycare.  This lasted for a wonderful 4 days then...

June 18 9:30pm: We take Shayna to the ER because she's inconsolable.  While we know she doesn't have colic and feel very strongly something is wrong, we still sat in the parking lot debating whether or not we were just be over concerned, first time parents.  At 10:30, Shayna finally nursed and fell asleep but shortly before midnight results from a heal prick would send everyone panicking.  The nurse practitioner was the first medical person to take her yellow color seriously and with elevated liver enzymes (the things we watch so carefully to this day) and a total bilirubin of 12.4 we new something was seriously wrong.

June 19: Doctor's appointments and checking into the pediatric wing of Roanoke Memorial Hospital.

June 20: We got a swift, and painful for Shayna, lesson on how to stand up to the medical professionals but by this afternoon we now have no problem say "no" to them until we clearly understand what they want to do and why.

June 25: Shayna and Ima take a private jet to CO to Denver Childrens who have are experts in Biliary Atresia and have one of the best teams for doing the surgical procedure that we hope will temporarily get bile flowing out of Shayna's liver again so it stops poisoning itself.

June 26: First surgery and it's unsuccessful.  They do everything safe that they can think in the OR but still have no idea why they're is a blockage or what is causing it.

July 1-Aug 8: Spent a beautiful if stressful summer in Boulder, CO with many doctor visits along with all the visits with our old friends and hiking in the mountains.

July 6: Found feet.

July 16: Figures out mechanism for rolling over at will.
Aug 10: Sits unassisted

Aug 17: Cuts first tooth and begins evaluation Children's Hospital of Pittsburgh for a liver transplant.  Beautiful facility but stressful time.

Sept 1: 2nd hospitalization.  Luckily only 3 days instead of 2 wks (between 2 hospitals) like the first time.

Sept 10: First movie date night for Ima and Aba since gaining those titles.  We saw Harry Potter and the Half-Blood Prince.

Sept 17: We all get the flu shot for the first time in our lives.

Oct 1: Figured out how to work both hands together to pick up her new basket ball.

Oct. 6: First Pittsburgh hospital over night stay.  Shayna loses 1kg (2.2lb) of fluid from her belly over night with albumin transfusions and diuretics.

Oct 7: Nahum begins 2 days of testing for Living Related Donor (LRD) compatibility.

Oct 16: Nahum nearly confirmed as a match for Shayna; however, doctors concerned about his cholesterol levels.  Transplant date scheduled for Nov 19.

Nov 3: Shayna enjoyed her first trip to the polls; though, most of the people we voted for lost and Virginia went red again.

Nov 14: Shayna shows cold symptoms.

Nov 16: Transplant officially rescheduled to Dec 1 because Shayna has a cold.

Nov 24: Learns to wave "bye-bye".

Dec 28: Leave for Pittsburgh and 3 months away from home.

Dec 1: Hand my daughter over to the transplant team at CHP because my husband's liver literally looks good to his surgeons.

Dec. 7: Shayna's abdomin is closed and the paralytic turned off.  Michael and I watch as she begins to twitch and move again after a week of no Shayna.

Dec. 8: Shayna's breathing machine is turned off as she is breathing well on her own with a little extra oxygen.

Dec 9: I get to hold my baby for the first time since I handed her over on the 1st.

Dec 10: Moved from the PICU (pediatric intensive care unit) to the regular liver/small bowels issues wing.  Hard not having our own personal nurse but much quieter and better for adult sleeping.

Dec 13: First post-transplant smile.  This means her incision site is feeling much better.

Dec 15: Rejection noticed with liver biopsy (numbers had started going up instead of continuing down).  Start iv steroids to combat and hospital stay officially lengthened.

Dec 18: Saw Shayna's old liver.  Large, hard and deep green.

Dec 21: Hilary leaves after 3 weeks of caring for Nahum.  Nahum is sad.

Dec 22: Met and got autographs from some Pittsburgh Steelers.

Dec 23: Got released from the hospital. We were ecstatic to be out but completely overwhelmed by all the meds I was supposed to get into her on my own.

Dec 25: Michael goes home and we both cry inside about it.  It was amazing and wonderful to go through everything in December with him.

Dec 27: Got a visit from some friends from home up visiting grandma.  A nice feeling of some normal-ness.

Dec 31: Patricia's Birthday.  We celebrated the next night with a good movie, Sherlock Holmes.  Shayna tasted her first snow.

Jan 1, 2010: Celebrate 1 month post-transplant with a growing, happy Shayna.

Jan 7: Shayna pees in the potty for the first time.  Within 3 days, she's peeing on cue (me saying "pssss") if she has to go and I have little potties all over the house.

Jan 20: Take Shayna to the pool (3rd time overall, 1st post-transplant) and she LOVED it.  Watching the other kids play was especially great.

Jan 25: Grandma Carole comes to visit and dote on Shayna.

Feb 4: Sits up on her own.

Feb 5: Crib mattress is lowered.

Feb 6: Pulls to standing in crib.

Feb 13: Cruises the couch.

Feb 14: Our first go-home day comes and goes due to both infection and rejection.

Feb 17: Can military crawl forward (no more inch worm) but still goes backward occasionally

Feb 21: Our 2nd go-home day comes and goes due to both infection and rejection.  Luckily the EBV seems to be getting under control and the liver numbers haven't actually gone up.

Feb 22: Cleared for a March 7th return home (pending good labs on March 1)

Feb 27: Our angel turns 1!  We celebrated with with much sugar and processed carbs at the Hertzmans.  It was a nice dual party as their 8-year-old shares the same birthday.  (I forgot my camera so they have all the pictures at the moment.)  Laux, cream cheese, bagels, and 3 cakes.  Plus, I learned how to make hamantaschen, a traditional Purim cookie as today is also Purim.

We would like to again thank all of our family and friends who have made this last year doable for us.  Without you, we don't know how we could have done all that has been asked of us just to get Shayna to her first birthday.  Thank you.

A few minutes old and one-year-old.

Liver Numbers Down!

Her liver numbers are back down in the normal, but high, range.  If that were the only thing we were watching, we could go home; however, we have to wait for the EBV results to come back today or tomorrow before we're officially cleared to leave.  We had a prograf dose change so I have to do labs this Thursday.  Her level went from 3.2 to 8.2 on the same dose but I don't think I changed how I gave it (sprinkling powder vs. whole capsule changes the amount of prograf absorbed so it's very important to administer it in a consistent manner).  Now I have to alternate between 0.5mg and 1.0mg each morning so I made a calendar to keep it straight.  Her blood pressure remains down (100-110 over 55-60, high for a baby but great for her) so I'm down to only 3 daily meds with 4 total administrations and vitamin D plus bactrim Mon/Wed/Fri.

She can military crawl forward but is still intimidated by distances over 1.5 feet so yesterday I laid out rummikub tiles like bread crumbs to get her to go 3'.  We'll do some more today as I want her to crawl before she walks for the muscle development and coordination crawling requires.  She loves to cruise on the couch.  She's still pretty slow about it and has trouble getting her left foot to coordinate with her right (the right one just gets too excited so won't stay still), but she'll go back and forth for hours if we let her.  She's much more adept at getting Cheerios into her mouth.  She has lots of carpet picnic snacks since the high chair we have is just a seat without a tray and sits about 2" lower than the table top.  Bamba are now a thing of the past but gold fish are great.  She still loves halved blueberries, pealed grapes, avocado, and flavored yogurts with cheerios.  Noodles continue to be rejected much to my dismay.  Most of her nutrition still comes from nursing.  She continues to gain weight so that seems fine for now.  She has more word like noises and I think can say much more than she lets on as words escape her mouth once but I won't hear them again after that.  She's back on 2 naps a day too.  My guess is the prednisone (steroids) finally wore out of her system so it can act in its more natural state.

Good news on the electronic from for me.  My cell phone was replaced as it was still under warranty; though, I still hate it just as much.  I took my computer to PC Doctor (2 blocks from our place and run by an Orthodox Jew).  He's installing a new video driver today for $85 and says that's what was causing me all the problems and the reason it quite powering up.  It'll be nice to have it back, and not to have to figure out where to scrape the money from to get a new one (like the one I'd like to have).  We'll go out for a walk with an umbrella to get it (and get me some exercise) this afternoon.

Right now we're shooting for home on March 8th.

Staying in Pittsburgh

Shayna's liver numbers went slightly down, which is good but not good enough to send us home.  We saw Dr. Bond today who said that it can take 2 weeks for signs of rejection to begin to show.  It's only been 1 week since we went cold turkey on her steroids (something usually weaned over a 2-3 month period) and halved her prograf so the rejection could easily begin to manifest itself next week.  If we went home and that happened, we'd be sent back to Pittsburgh so the safest thing is to stay put.  We'll have a full lab workup Monday followed by clinic then the 2 day wait for EBV results.  In the mean time, we'll just keep our fingers crossed that her body has missed the fact it still has a foreign organ operating inside it and EBV stays low.

Our amazing landlords Evan and Mark have extended our lease yet again to take us through March 8th (taking a conscious business hit with that decision).  Nahum's big proposal is due on the 26th so we wouldn't be heading home in the middle of the week either way and with all the labwork unknowns we'd just rather play it safe and give ourselves some extra time to play with.

There are 2 reasons I'm excited about staying until March 8th.  The first is I have a new chance to take Shayna to the Aquarium now that I can drive again (Yay for driving!) and, after the proposal is submitted, we can take an early afternoon and go to one of the museums.  (Right now Nahum is working 7 days a week.)  The second is we're not moving on Shayna's first birthday so I can take the time to make a cake and plan a little party.  I've been reading about cake making in Joy of Cooking and am stoked to be able to make her her 1st birthday cake on her 1st birthday.  It's right after the proposal is due so Nahum will actually take the whole day off to be with us too.

Thank you Mark and Evan for providing such a wonderful home away from home.  Thank you Yael for keeping your weekend open for us in case we could have come home.  And thanks to everyone else who has been sending good thoughts and words our way.  We continue to be amazed by and grateful for all the wonderful people that surround us during this difficult journey.

EBV Down...

...but we still have to wait until our appointment tomorrow morning to see if we can go home.  It hinges now on how much her immune system attacked her new liver while it was also fighting the EBV.

 

In the mean time, I dug out the car today with the help of a nice neighbor Rose.  She saw me working and just came out to help with her broom and snow shovel.  We cleared the car in 40 min instead of the 1hr30min it would have taken me.  That worked out even better since Shayna was woken up early from her nap with a dirty diaper. I stepped into the house to have her start hooting for attention just after I'd gotten my wet shoes and clothes off.

 

I can drive us to lab and clinic tomorrow!

Little Mishaps

We're fairly snowed in here so transportation is hard to get.  I managed to get a cab scheduled for yesterday morning at 6:45am to take Shayna and I to labs and clinic.  The driver called me @ 6:30 to see how to get to me without getting stuck on our street.  I said we'd meet him at the corner of the main road because it's fairly clear.  He decides to try to be a hero anyway and as I'm loading Shayna up in the entry I hear the "vvvvvvvvvvvvv" sound of tires with no traction.  I spent the next 30 minutes helping our driver try to dig out his cab before a truck from his company came to pull him our of the snow bank and back into the snow ruts on the road.  The rest of the drive was sloppy and skiddy but we made it there just before 8am.  Shayna was grumpy because she'd woken up at 5am and was still tired so she cried when they drew blood and was not interested in being bothered by anyone except Ima.  The talk with Dr. Sindhi finally helped me understand Shayna's EBV-PCR numbers.  It's basically a super sensitive test that looks for active virus in her blood before it infects the tissues.  Right now, Shayna has the active virus floating around her blood stream but it has not infected any tissues.  It could stay like this for a while and not cause any problems but there is no way to predict one way or the other.  However, problems it could cause are severe and difficult to treat so we stay put until nothing happens for a while and we go home or something happens and we go to the hospital.  On the bright side, we're down 3 more meds because of the high EBV (one of them was 5ml too) so only have 6 that we give her.

The good new was Shayna gained ~150g for a naked weight of 7.25kg.  She really likes to feed herself so I am continually challenged to find nutritious, delicious, and calorie dense food that she can pickup.  Babma has replaced rice/oatmeal baby cereal and the exersaucer from the Hertmans has become snack zone since it's the only thing we have with a tray around it.  We've also been successful with canned fruits (in pear juice not sugar added syrup).  She master sippy cup drinking this week.  She now knows which piece goes into her mouth and that she has to tip it up to get liquid out.

An interesting coincidence: both my computer and cell phone quit working on the same day 2 days ago. My cell is under manufacture's warranty so Verizon is sending a new one (yay!); however, the computer is 5 years old and has been giving me the blue screen of death almost everyday for the past month.  If I were home, I would have wiped it clean and started over with many phone calls to my dad and my software disks.  Now it simply won't turn on; however, there is a computer repair place around the corning with a sign saying if I bring my computer in they'll do a free diagnostic.  It's worth a try.  For now, I have Nahum's cell and laptop (he's got a real computer at the office so leaves it home anyway and they're gave him a phone a couple weeks ago).  It's nice having a husband that shares so well.  (I did save all my documents and pictures to dvds last week.)

Nahum has an infection at the surgery site again.  This time he's been given antibiotics for 2 weeks but they shouldn't knock him out like the last ones.  He's been on them for 2 days now and seems to be responding well and still able to function as he's still putting in long hours at the office and can play on the floor with Shayna in the evening.

We're both anxious to be home to find our new normal and quit living a life so up in the air but are thankful to be able to have such a wonderful life here.

Home Coming Postponed

We have to stay through next week because Shayna's EBV numbers have continued to climb.  We had both the prednisone and prograf lowered today and are looking at a possible liver biopsy if things don't improve by Thursday morning to see if anything more serious is happening.  Instead of the bottom of the 3rd tier, she's now 1/3 of the way through it.  If she hits tier IV, she'll be admitted to the hospital for IV anti-viral medications.  I've extended our lease and canceled our moving help.

She's officially switched from a 2-nap-a-day baby to a 1-nap 1-yr-old.  (My little girl's growing up!)  That should make planning outings so much easier and I'll be able to stop at the store now on the way home from labs.  She's getting much better at feeding herself (things in her fist were inaccessible, now she's gets them 1/2 the time) and climbing everything.  She enjoys her new found scooting freedom as she can get to toys w/i a 3' radius of where she's placed.  I've put a few outlet covers in the outlets she's discovered but she still can't get to much so I haven't really had to baby proof anything. 

Here's today's pic of the day: I was walking her to the table for a snack and she decided to take the abacus with her.

Gerry and Judy Our Heros

We had to get Shayna to labs today, our car surrounded by walls of snow, the plow had not gotten to our street, and we've got the worst tires possible for driving on snow.  I decided to take her in the afternoon (works better with our prograf dose schedule anyway) hoping the roads would be a little clearer and I could take a cab.  So at 3:30 I call Yellow Cab to see if they could get me to the hospital between 4:30-5pm.  No dice.  I then looked at the bus schedule.  It's a 2-bus, 1hr trip on a normal day.  So pulled out my last resort card and called Judy, my good friend's mother-in-law who has been helping us with everything from the very beginning.  She and Gerry were at the grocery stocking up for the next storm (current predict up to 10") and the store was very crowded.  None the less, they came to my rescue and picked Shayna and I up at 4:20 with a carseat already in the car.  The drive to was a little sketchy but not bad, lab took 25 minutes, but the drive home was another heroic effort of 60 minutes.  Without these labs results back by our Thursday Dr. apt, we won't know if we can go home so I had to get to the hospital for it today so Gerry and Judy saved the day again.

Shayna is her usual amazing self and has begun to listen to instructions (like "stay" when she wants to worm and squirm for a diaper change).  She goes through these intellectual and physical leaps from one day to the next and just blows us away.  When she stands in her crib, she's still scared to let go to sit again so needs rescuing when she's tired.  (When she just wants to play, she'll get up and down no problem.)  When she's tired she just gets overwhelmed and works herself into a fit.  Luckily she'll go straight down with a little calming.

Nahum and I are concerned the approaching storm may delay our home coming by a week.  And I have no idea how we're going to get to the hospital on Thursday if it really snows 10".  We'll figure something out.  What is life without a little excitement.  At least they plowed our street while I was out.  Now there's only 4" of packed snow.

 

Here the princess is at the bottom of our front steps on Saturday.