Weekend Update

We just wanted to update our friends and family of all the latest happenings with the ‘ol Crew.  First off is Adalyn:  She’s been doing great since starting her treatments.  She’s finished up her oral antibiotic and is plowing through the rest of her TOBI like a trooper.  She’s seemed to have gotten over her cough and is sounding/breathing like normal.  She’s showing no signs of being sick and, in fact, she’s been chock full of energy these past few days.  Hopefully things will continue the way they’re going and by September 7th when she goes back to Clinic to get tested, she’ll be pseudomonas free!  We’re certainly keeping our fingers crossed!  Unfortunately, our trip to the Botanical Gardens was rained out this weekend, but that didn’t stop us from playing outside in the yard.  Adalyn got into all sorts of trouble running around in the rain picking up flowers (weeds) and playing in the mud puddles.

Second update: we’re finally coming to the end of our house hunt.  We are set to close on our house September 3rd and we’ve narrowed the home we want to buy down to two.  We are going to revisit one of them tomorrow evening and plan on making our decision afterwards.  Exciting stuff!

Final update: Baby boy is doing great.  He’s measuring about 4-5 days ahead of schedule and the doctor advised us that he doesn’t see any need for Kayla to continue to come in weekly for a check up.  His heart looks healthy and the blood flow to his brain appears to be normal.  We thank everyone who’s been thinking about and praying for our family.  We greatly appreciate it!

That’s all for the weekend update.  I’ll close with a few pictures of Adalyn finally noticing the vapor that comes out of her nebulizer.  It kept her attention for a little while.  Until she found her foot, that is.  Silly girl.

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Miss Independent

Adalyn is almost 17 months old and with every day that passes she seems to want to get more and more independent. Tonight during her TOBI treatment she “insisted” on holding the nebulizer cup to her mouth the entire 30 minutes. She kept a firm grip on the cup, only letting go with one hand so she could throw punches in the air, while mimicking one of her favorite Disney princesses, Mulan. “Ha!…Ha!”, she would yell as she thrusted her free hand toward the iPad, terrifying her imaginary enemies no doubt. 🙂 This girl is pure joy to watch.

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House Hunt Baby Watch Bacteria Fight 2013

These last few weeks have been CRAZY!  It feels as though we’ve been riding a whirlwind of news, both good and… not-so-good.

Let’s start off with some good news eh?  We’re currently scheduled to close on the sale of our home August 28th.  After a few offers where the financing didn’t pan out, it looks like this one might go ALL…THE…WAAAY!  We’re very happy…and sad.  We love our home and will miss it fiercely.  But life is all about change and we are looking forward to what the future holds for us.

OK, on to some not-so-good news.  Adalyn has grown Pseudomonas…  For people in the CF community this is a tough pill to swallow.  It’s a bacteria that thrives in moist, warm conditions…like the lungs.  Individuals without CF usually have no problem fighting off the bacteria.  However CF patients, with unusually sticky mucus build up in their lungs, gives the bacteria an environment to thrive in.  While infected, the lungs become inflamed causing severe coughing, exacerbation, and other breathing problems.   Adalyn’s breathing treatments have now been supplemented with an oral and an inhaled antibiotic.  We’ll be on the medicine for 4 weeks then she will get tested (throat swab) to see if the bacteria has been eliminated.  Please keep Adalyn in your thoughts and prayers.

With that, lets end on some good news.  Baby “A” is thriving.  His measurements, heart, brain activity, and blood flow all appear to be normal and he’s constantly moving.  The doctor said he’s measuring about 4-5 days ahead of schedule.  Thanks to all of you who have been thinking about and praying for our little boy.  Your words of sympathy and encouragement have helped us heal during this tough time in our lives.

Before we go, tonight was the first night in a while that I’ve had time to wrangle up Adalyn and take a few pictures of our little princess.  From all the smiles and rambunctiousness you’d never guess she was under the weather.

*Side Note* – Pictures taken with my new, more pocketable camera, the Sony NEX-6.  What do you think?

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Heartbroken

We’ve lost baby “B”.  I’ve never been very good with words and they are certainly escaping me now.  It’s with a heavy heart I type this post tonight but we want to keep friends and family up to date with how the pregnancy is progressing.

The day started out good enough.  Kayla and I had been looking forward to our ultrasound appointment all morning.  Around lunch time we made our way to the hospital and checked in ahead of schedule.  Baby “A’s” ultrasound went great.  He was moving all around and he appeared to be healthy and happy.  “A’s” entire examination took a good 25-30 minutes.  I’m not sure why we didn’t pick up on it, but baby “B’s” examination only took a few moments before the nurse was taking off her gloves and walking out of the room, telling us the doctor would be in momentarily.  When I asked her how all the measurements were looking, she hesitated and then simply repeated that the doctor would go over all of that with us shortly.  He came in a few minutes later followed by three other nurses.  That’s when I got a feeling something wasn’t right.  The doctor fired up the ultrasound machine and viewed both babies together, side by side.  Baby “A” didn’t stop moving while Baby “B” was curled up motionless.  Kayla, still not yet sensing anything was wrong, smiled and asked the Doctor if the babies could feel each other yet.  The Doctor, with a solemn look on his face only shook his head, no.  Before anyone could ask another question, the Doctor remarked “I have some bad news…” and he began to explain that baby “B” was very swollen and appeared to have suffered from an infant version of congestive heart failure.  The cause is still unknown.  It could be anything from a heart defect, not uncommon in twins, to a virus.  Kayla gave blood to rule out the latter.  Baby “A” appears to be doing fine and will be monitored once a week.

We’re of course heartbroken by the news we’ve received and are still in shock.  We’ve been looking forward to  welcoming “The Boys” for what seems like forever now and the thought of only having one baby in the womb is still foreign to us.  We’re half way through the pregnancy and are praying that Baby “A” continues to stay healthy.  We thank all of our family and friends for their support, your love and prayers are what lifts us up and keeps us going.  It will take time, but we will heal from our loss and hopefully become stronger from it.  And while our Crew may have gotten smaller, our hearts will always hold a space for our precious Baby “B.”

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Wish We Were There

We just got back from a 6 day fun-filled cruise to the Caribbean. During our trip we visited the Butterfly Conservatory at Key West, a beautiful beach at Grand Turk, and the Ardastra – Gardens/Zoo in Nassau. We were pretty bummed that it rained most of the time we were in Key West, but luckily it cleared up and stayed sunny for the rest of our adventure. Adalyn LOVED the cruising life. If I had to guess, she enjoyed the many glass elevator rides between our floor and the Lido deck the most. She even started to say “UP” or “DOWN” according to where we were going. Too cute. Anyway, we’re home safe and sound and are looking forward to getting back into the groove of normalcy again. More pics and video to come soon!

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