Wednesday, December 31, 2014

New Us, New Year

Our first week home is behind is, and has gone reasonably well.  The medical stuff has been a little rough, but given that some families travel home with their children on oxygen and are met at the airport by an ambulance, I'm not going to complain.

Frannie was pale.  Paler than I've ever seen myself or one of my girls.  There wasn't a hint of pink anywhere on her.  Each time we brought home one of our girls, the first order of business has been to get them in for labs ASAP.  You just never know what the actual transfusion status of your child is until you get them checked yourself.  So after 28 hours of travel and one jet lagged night of sleep we headed to the hospital to get Frannie's labs checked.   To top it off, I headed to the doctor because I was having trouble breathing.  My oxygen saturation was low so I had a nebulizer treatment and some labs done myself.

First blood draw about 15 hours after returning home.

Big girl did a great job.

Later in the day we got both of our labs back and none of them were good.  Poor Frannie's hemoglobin was at a critical level of 5.9 g/dL.  My labs came back and while my hemoglobin was decent, I had an elevated d-dimer test, which is a screening test for a blood clot.  So while we were working out a plan for getting Frannie blood--and getting it fast--I headed into the Emergency Department with my dad for a CT scan to determine whether I was having a pulmonary embolism.  [Thal lesson for the day:  The reason for the worry is because patients with thal intermedia are at an increased risk for thrombosis, and the risk is even higher in asplenic patients. So, everyone was a bit alarmed.]  Exhausted, nervous for Frannie, nervous for myself, and generally miserable I spent 5 hours waiting for the scan and results, which were thankfully negative.  It turned out I simply had a horrible case of bronchitis, which would need to be treated outpatient with nebulizer treatments for the next few days.  My dreamy visions of our first days home singing "Getting to Know You", cuddling on the couch, and playing was quickly getting replaced by our usual return-from-China reality which has always included emergency appointments for myself and our new addition.

So for Frannie, our infusion unit was booked up and understaffed due to people being on holiday.  Because it was urgent for her to get blood, she was admitted to the hospital for the day on Sunday for a transfusion.  Getting blood on the floor as an inpatient takes much longer than in our infusion unit, so we were there for a 9 hour day even though she had her type/screen already done.  Hematology came by and said that while pale, Frannie looked good.  They also noted that even though she was getting a big transfusion, because she was so low it wouldn't bring her up to where she need to be.  So, we'll need to return soon for additional blood before she can get on a normal schedule.  Frannie did remarkably well at her transfusion, despite the fact that she was stuck three times.

Pale and very anemic, but otherwise doing great.

Blood flowing after three sticks.

Emmie and Rosie having a little fun time with Baba while we
were at the hospital.  (And by having fun, I mean going to the supermarket.)

The next few days were full of more medical appointments for my bronchitis, for Frannie's bronchitis and first check-up with the pediatrician, and for the girls' transfusion.  It was feeling a little difficult to spend any time as a "normal" family because someone was always at the doctor.  Still in the little calm time we had at home, Frannie was definitely starting to settle in.  Right from that first night home, she started exploring around our house, testing out the toys, and learning where things are kept.  She quickly figured out which seat at the table was hers and where the snacks are.  When it is time to go out and she sees Emmie and Rosie get their shoes, she'll go and get hers and bring them to me.  She's been making herself right at home, which really makes us happy.

Frannie has a few pet peeves in her new home.  She doesn't like her crib, and fights sleep with all her might.  It's been impossible to put her down for a nap, resulting in sheer exhaustion later in the day.  She protests when we put her in the crib at night.  She is also very anxious around meal time.  She screams and cries and pounds her tray while she waits for me to bring her food to her.  If she wasn't as plump as she is, I would think that she did not get enough food and was left hungry.  And she *hates* when I have to leave the house for a minute.  Which is unfortunate, because normally at this stage I would never leave the house for one single second, but I have had no choice because of the medical stuff.

Most of the time, Frannie seems quite happy.  She is a great imitator and definitely a bright little girl.  She likes to play alone, with us, and with the girls.  Sometimes she just watches her sisters' crazy games and smiles at them.  Other times she joins right in pretend cooking or chasing each other around the house.  She likes to color, have pretend tea parties, and knock towers of blocks over.  During one of our typical family dance parties, at first she just sat there and looked at us like we were crazy, but then she took my hands and joined in, laughing.  She is slowly warming up to us.  While she doesn't spontaneously offer hugs or kisses to us yet (and I wouldn't expect her to), sometimes she comes up to me and puts her arms around my legs and presses her head between my knees.  When she looks up at me, she has the sweetest smile on her face.  She is quickly taking over as the best eater in our house (well, not better than Baba).  She tries anything.  The only thing we've come across that she didn't like was a crinkle cut fry in the Executive Lounge at the Holiday Inn Shifu, and tonight she spit out a brussel sprout.  She likes hummus, pork tenderloin, and pastina, and I have had to really ramp up my chicken congee production.  The only problem with her eating is that she wants to do it all the time!

Very happy once the food is on her tray.
Like her sisters, she loves Nana's chicken soup.
Emmie and Rosie continue to amaze me with their maturity when it comes to our new family member.  It's not easy to have a new person touching all of your stuff, in your personal space, and vying for your parents' attention.  But they are handing it with such grace, sharing with her, playing with her, and trying to love on her.  It is so funny to watch how taken they are with her "baby-ness" in both positive and negative ways.  Emmie keeps talking about how excited she is to show off her baby sister when she returns to pre-K and Rosie wants to try to help feed her.  But Emmie also says things like, "Mama, she's disgusting putting chocolate cookies in hummus."  And they are fascinated with her needs like diaper changing.  One day, poor Frannie was having some tummy troubles from all of the changes in her diet, and as a result had some diaper rash.  Rosie-who thinks she has to assist every diaper change-saw how sad Frannie was as we were getting ready to put on more Desitin so she stroked her face and sang to her:

Oh, baby sister Frannie
Don't you cry
Mama will make you feel better
When she rubs that yogurt on your tushie

So that sort of sums up our crazy family, and our crazy first week.  Throw in a random high fever, a bout of terrible hives, a goopy eye, and some sort of irritation on her face, and that's Frannie's welcome to America.  She is such joy, and we are all really enjoying having a baby in the house for the first time.  And we're happy to report that we are all feeling better, and that the jet lag has begun to subside.  Hopefully the medical stuff will continue to settle down, and then the fun will really begin.

The gals getting new blood on New Years Eve.

The five of us all snuggled in, feeling better, and ready to celebrate
New Years Eve (ie, Eat snacks, have a dance party, say we're going to watch a movie,
and then pass out at 8:35pm.  Perhaps we are NOT over the jet lag yet.)


Anonymous said...

Congratulations and Happy New Year! So good to hear that all the medical scares are under control and your positive attitude through everything. Your family is so adorable! Love the diaper rash song :)
Blessings, Cindy in Illinois

Debbie said...

Hi.......Im following your blog from Scotland UK, amazing!

With very best wishes for your wee family xx

Renate Jackson said...

Oh my goodness,you have been busy. The jet lag alone would be hard. So glad you are all doing better. Thanks so much for this update,hope things calm down.

Anonymous said...

Happy to read all on way to recovery!!Your 3 dollies are sooooooo adorable and helpers ,too!!God Bless / Cathy in illinois!!!

Joe and Pattie said...

With all you are dealing with, it is amazing you find it in your heart to still blog and post photos to keep us all up to date. Thank you so much and get well.

Marylou Reiff said...

Glad that things are improving. I don't know how you do what you do. I admire you so.

Penny said...

Dang, you had a whole trip to China and I missed it the chance to follow along?!? Congratulations, she is beautiful!