All We Want for Christmas...

Have I mentioned our girl is growing?  This time last year, Josephine was still in ICU and still weighing in at under 10 pounds.  As of her Immunology appointment last week, she has grown to nearly 23 pounds, and more impressively, just an inch or two shy of three feet tall!  Healthwise, she's doing well.  Confident with her progress, her doctors have reduced the frequency of her clinic visits.  Every week...to every two weeks...to every month...to every three months...and now once every SIX months!  Her next official (or more accurately, "scheduled") procedure will be a cardiac cath next August.  Dr. Ikemba and Dr. Nugent have even cautiously predicted that, due to her abnormally high oxygen saturation levels, Josephine may NOT have to undergo the Fontain surgery when she turns 3.  What an enormous blessing that would be!

Developmentally, Josephine has made big strides in the past several months.  When I last wrote, she was mock crawling.  Her chosen mode of transport these days - when not hitching a ride with Mommy or Daddy or coasting about in style on her elephant cruiser - is speed crawling.  (She has gotten quite good at it and will drop down and take off crawling whenever the urge hits...which is quite frequently!)  She's still using furniture for walking support, but has also taken to horizontally "scaling" walls, Spiderman-style.  Climbing stairs is also quickly becoming a favorite. (We call it "climbing Mount Doom"...and just like the greatest mountaineers, she always does it without supplemental oxygen. :))

Although she has made exceptional progress from a feeding standpoint, we're still about 8 oz. short per day from pulling her ng tube.  (On a normal day, Josephine needs about 28 oz. of puree and formula.  If she takes any less, she not only runs the risk of losing weight, she also could become dehydrated.  Very bad for a cardiac kid!)  Today, we'll be starting an inpatient stay at Our Children's House, a small, specialized hospital that serves kids with feeding challenges.  Over the next 4 weeks, Josephine will receive intensive PT, OT and speech/feeding therapies, with the ultimate goal of increasing her oral intake to a point that we can officially, once and for all BE TUBE-FREE!  While none of us are exactly thrilled at the prospect of spending another Christmas in the hospital, we have every confidence that this ninja-princess will continue to be a total rockstar when it comes to reaching her treatment goals.  Come New Year's, she'll be a walking, talking, eating machine. (And Mommy and Daddy will be in REAL trouble then!)

We'd appreciate prayers and positive thoughts specifically for:

1. An expeditious, productive stay at OCH...we wanna be tube-free!

2. Extra measures of sanity for Mommy and Daddy as we re-adjust to hospital life.

3. Understanding from our employers, who have been extremely supportive up to this point. 

4. Honesty, empathy and compassion from our medical insurance carriers.  (We have had quite a fight!)

Pre-Cath Jitters

Difficult to believe another month has passed (and really difficult to believe it took me over a month to upload the prior post.  Where has the time gone?)

Tonight we’re preparing Josephine for her cardiac cath, which is set to take place tomorrow.  It would be a huge lie for me to say I’m not nervous.  (I read some research that said parents – in particular, mothers – who have children with heart defects that undergo surgery and have an extended hospital stay often develop symptoms of PTSD.  I believe the specific words were “at increased risk for intermediate and long-term psychological malfunctioning.”  Malfunctioning.  Is that what I’ve been doing over the past several months?  Why didn't someone warn me?) 

Despite our nerves, our sweet, precious girl, is playful and happy…and not at all wanting to go to sleep this evening. J

We’ll be at Children’s bright and early for our 6:00 a.m. appointment.  I’d imagine Josephine will go back at 7 or 7:30, and the procedure will probably take 3 hours or so.  We specifically requested Dr. Nugent to preside over the “festivities”.  He’s a great practitioner, explains everything thoroughly and has tons of experience with cath procedures.  (Plus, he has a ridiculously cool accent.  That’s a bonus. J)  Most importantly, he was attending physician at points during both of Josephine’s other post-surgical hospital stays, so he knows a bit of what she – and we – have been through thus far.  It’s nice to have people around who know her history.

We love this little girl so much!  Requesting tons of prayers and positive thoughts for tomorrow!

Oh, What a Difference a Day Makes!

Our little girl is growing!  

When we left the hospital back in January, Josephine was weighing in at roughly 12 pounds.  Thanks to some good nutrition – and in spite of a nasty tummy bug we weathered back in early May – she’s now up to almost 20 pounds!  According to Dr. Ikemba (her cardiologist), she’s steadily on track for her weight and above average in height (she gets that from Mommy) and head circumference (we’re gonna say she gets that from daddy. :P).  She has also made some remarkable medical strides over the past few months.  Although she’s stubbornly holding on to her ng tube (deep suction is a trauma that isn’t easily erased, apparently), we’ve entirely weaned her off of the pain and anxiety medications she required after surgery.  (No easy task.)  We’ve also managed to eliminate all 5 breathing treatments!  We still administer around 25 different doses of medications each day, but the regimen – at least in terms of time – is much improved. 

Josephine has also been working with physical and speech therapy to make up for developmental time lost while she was in the hospital. Michael and I are continually amazed at how very capable – but very willful – this girl is!  Everything (and I mean everything) is on Josephine time.  She’s constantly taking things in and assessing her options…”Hmmm…you want me to sit up, huh? Well, what’s in it for me?”  One day she’s not.  Then boom. She just decides things are going to happen.  Currently, our little princess is sitting, mock crawling and standing with a little assistance from the ottoman in our living room.  And for her next big trick?  Perhaps walking!   (We have no doubt that once this kid gets moving, there’ll be no stopping her. ☺)

Josephine’s next surgical procedure will be in early August. The doctors have scheduled another heart cath to coil some of her collaterals.  (Basically, this involves sealing off vessels using a coil-shaped device that is snaked through a vein in her leg via a catheter.  A serious deal, but minor in comparison to the other surgeries she has had.)  While the collaterals seem to be serving her well – her O2 levels are currently running around 92% - the cardiology team has explained that too much blood flow can increase the pressure in her lungs and potentially jeopardize the final surgery.  That could ultimately result in a transplant scenario…so, cath we will!

Between doctor’s appointments, therapy visits and general “life-with-a-baby moments”, we’ve been busy getting ready for Josephine’s first big adventure – to Alaska!  Michael’s grandparents will be celebrating 60 years of wedded bliss and have invited the entire family on a cruise to share in their joy.  The past few days have been a flurry of packing and preparation.  We even made a special trip to the pediatrician this week to get some ear-numbing drops (just in case), some allergy medication (just in case), and some advice on “what to do in case of…” (just in case ☺).  To make sure all of our bases are covered, I also purchased the economy-size package of ear plugs for the plane ride.  Maybe instead of being the family that got kicked off a plane for having a noisy infant, we’ll be that sweet, well-meaning family who did their best to minimize discomfort for all involved.  Hoping for the best!

(Sadly, I wrote this back in June...didn't post until August! Ack!)