Going Home!!!

I've got tons to do between now and Sunday morning when we pull out of here but we've been officially cleared to go home!!!!!!!!

Oh, and Shayna started crawling on hands and knees yesterday too.

The Zoo It Was

I spent the afternoon at the Pittsburgh Zoo and Aquarium with a 1-year-old and she was totally fascinated.

She giggled over the Lemurs like she does the cat out front.

She didn't know what to make of the water line in the glass so kept trying to grab it but the swimming penguins were fun.

Standing over one of the aquariums at the Aquarium building.  The fish swimming beneath her were really cool and there wasn't that stupid water line to confuse her.

I want to go back so we can spend more time at the Aquarium as we had to rush through since she was very tired.  We saw lions, a tiger, two polar bears, otters, a kodiak bear, a black bear, elephants of all ages, lots of monkey type creatures, sharks, penguins, bright fish, an octopus, eels, and lots more.  It's an amazing facility.

Training Aba

I wondered how Nahum would be involved in EC/TT because when I ask him to potty Shayna he moans about the "work".  I didn't ask much so last week Shayna took matters into her own hands.  She'll squawk when she wants something (nurse, sleep, potty, attention) so I've been making educated guesses for the last 2 months.  She's also only expected me to take her to the potty so hasn't asked others to do it, until last week that is when she started making Aba take her potty too.  Instead of Aba toilet training Shayna, Shayna is training Aba.

We're still on for going home this weekend.  I'd put it at about 85% chance as her liver numbers looked great and her prograf level was right where the doc's want it, but her EBV results aren't back yet.  We don't see the transplant doc's until summer but they still have me on bi-weekly labs.  The reason I think the chances are so good is that Shayna's coordinator sent discharge packets to her Blacksburg pediatrician Dr. Berry and Roanoke GI doc Dr. Hart yesterday for our appointments with them next week.  I stopped by clinic to get weight and height for her 1-year babybook entry and she's really grown.  She's gained 200g in the last 2 weeks to hit 7.446kg (16.4lb) and is 69cm (27.2in) so she's officially out grown her car seat.  (I've got her big girl car seat in Blacksburg waiting for us.)  She's got 585g (1lb4.5oz) to go before she doubles her birth weight (usually done around 4 months) but she's been eating like a horse recently so I'm hopeful it'll happen soon.

After a valiant 2 weeks of 10hr days every day, Nahum submitted the major proposal he'd been working on since January on Friday and a smaller one as well.  It was was wonderful to have him home all weekend for both Shayna and I.  We had a relaxed birthday morning then spent the afternoon with wonderful friends.  We relaxed more Sunday, went for a walk to watch the people sledding at the park (which has an amazing sledding hill), and I got an afternoon nap.  Nahum is just dealing with bureaucratic odds and ends this week so  he can hit the ground running next week with his new post doc in Blacksburg.

I'm debating whether to take Shayna to the Aquarium and Zoo today or start packing.

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!