Day 58-Changing Landscapes



Family "Tiny Mights" MOD walk



I spent most of this week in Arizona. Its an unusual state, with varied topography.

When you drive north from Phoenix on I-17, you start going up....Phoenix sits at an elevation of around 1100 feet or so. Its hot-really hot...It gets near or above 100 degrees from April-October.

However, as you start traveling north and rising out of the valley, its starts cooling off. The landscape also starts to change dramatically. You go from hot dry desert, through a transiiton zone of rocks & cactus, to a thick pine forest landscape. By the time you get up to Flagstaff at almost 7000 feet, you've entered another world.



Journey School friends walking Team Tiny Mights!



This week in the NICU has yielded changing landscapes, unfortunately not necessarily for the better. My excitement of last weeks post has been replaced with the grim reminder that we are indeed not out of the woods, and even after 2 months in the NICU, the girls are still facing issues. My hope that Hanna was coming home soon is fading........

Hanna:

Weighing in a 5 lbs 13 oz now.....

Had a sobering discussion with the NICU doctors today. As they explained it, Hanna has been going slightly downhill for the last week or so now. Her oxygen requirements have gone up.....Her lungs look "wet", and she seems to be having a harder time breathing. She is having brady's (bradychardia episodes where her heart rate goes way down) and desats (where her breathing and o2 saturation plummets).



Hanna Sleeping



Just when we thought things were looking good.......The diagnosis is that her formerly "asymptomatic" PDA is starting to rear its ugly head. Its now officially "symptomatic".

The doctors have done an "echo" and see that Hanna's PDA is still quite large. They have put her on ibuprofen as a sort of "last ditch" effort to close the PDA. We were hoping that the PDA would close on its own, or at least remain "asymptomatic" and not cause her any distress. Unfortunately, that's not the case.

So....They are starting to talk about "next steps", which includes surgery...the same PDA ligation surgery that Ashlyn had several weeks ago. They are going to bring in the cardiologists next week if the Ibuprofen doesn't help the PDA.  Not good.

Amazing to think that Hanna is now having issues...

After being the "senior partner" this whole time, and never showing any real problems, its terribly disappointing.

Ashlyn:



Ashlyn wide awake

 Rocking along at 4lbs 8oz now...Feeding well, and on 100% breast milk with no signs of her Chylothorax reappearing.

Most notably she is often very alert.....Eyes wide open , awake alot, and very active. She is starting to learn how to nipple, and taking milk from a bottle.

She has remarkably-unbelievably changed places with her sister Hanna. Ashlyn is now the healthy one, and doing fantastic. Hanna is the new troublemaker.

The scales have tipped in Ashlyn's favor now, and perhaps she should be renamed the "senior partner".

Unreal.

The photos are from the March of Dimes walk we did last weekend. Sara raised around $1200 from the walk for the March of Dimes, and we had a great crew of neighbors and journey school folks who supported us. Special thanks to Cindy who made "tiny mights" shirts for everyone...It was a great event, and as always, we appreciate the support.

So, we are back to the prayer wheel. Please send prayers to Hanna and tell her to close her PDA.