Thursday, August 6, 2015

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!)

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