Day 50 -Mile 22

Today represents a milestone day in the NICU...Day 50.

Its hard to believe really; Hard to believe the girls are nearing 2 months old and have not moved from the same room about 20 yards down the hall from where they were delivered. Hard to believe that we have been coming down here every day for 50 days; Hard to believe that after all we have been through there is light at the end of the tunnel.

If this was a marathon, we would be around mile 22 now; You've pushed through the "wall" at mile 18, and you know you're going to make it to the finish. Only 4.2 miles to go.....however, you're exhausted; your legs hurt and feel heavy; your mentally drained and time gets very slow. Every mile feels like an eternity.

You begin to feel the emotional joy of knowing you're going to make it to the finish line, but know that you still have some tough miles to go. There still may be some unexpected setbacks; You might get a cramp, a muscle tweak, or you might overheat and have to slow down. You want so desperately to beat your PR (personal record) time, and know you'll have to push hard and keep pace from here to make it happen.

That's pretty much where we are: Tired of coming down here every day; Eager to get the girls home, and hopeful that we don't get any further setbacks.

Today's news is good.




Hanna's touchdown pose

Hanna:
Feeding and growing...Hanna is weighing in at 5 lbs 5oz now, and is looking very good. She is holding her oxygen level well on a very low cannula, and is regulating her temperature perfectly as well.

She is pounding down 45 cc's of mom's breast milk every 3 hours.....Sara is teaching her how to suck on the boob, and she is learning. She has sporadic episodes where she can put together the skill set necessary to breastfeed (suck, swallow, breathe)....but still gets tired doing it and then falls back asleep. She still has some work to do here.

Both girls have 3 requirements to go home are:

1. Be able to breastfeed and/or bottle feed
2. Pass a "room air test"- Have no oxygen for 45 minutes and have good Oxygen levels
3. Have no "A's or B's" for 5 days-These are the apnea or brachacardyria episodes we've become accustomed to-breathing slows and stops, heart rate goes way down, lights flash, warning beeps start dinging, and then she "wakes up" and goes back to normal.



Both girls in cribs w/ Mom



Hanna has some work to do on #1- She's in training for Suck, swallow, breathe......

Right now she has #2 done....she can breathe fine with no O2 for 5-10 minutes, likely longer.

She is close on #3....She's only has a few "episodes" over the last 4 days and they seem to get more infrequent.

Beyond that, her PDA is still large, but still very "asymptomatic"....No action required. Still hoping it closes on its own over time, and getting more comfortable with the likelihood that she is coming home with it.

So, all in all, Hanna is doing GREAT and has a road map to GET OUT OF THE NICU AND COME HOME!!!!!! YES! The Nurses are saying its likely she is coming home in 10-14 days!!!

Ashlyn:



Hi Ashlyn!

 The big news today is that she is out of her isolette! Yep, after 50 days in an incubator, she is finally out in a "mini" crib like Hanna, and looks the best I have seen her.

She's weighing in at 4lbs!

More goods news: She has started to be weened off her enfaport milk and is transitioning to "real" breastmilk in stages this week. Today we are moving from 75% enfaport/25% breastmilk, to a 50-50 concoction.

You will recall the reason for the enfaport was her Chylothorax. Babies with this serious issue are given low fat milk called enfaport so as not to aggravate the condition for 6 weeks. This is her 8th week of life, and thus they have started to introduce the real stuff. So far, she seems to be tolerating it fine, and fingers are crossed that she will continue to react well to "real" breastmilk.

Even more good news: They are moving her to a low flow nasal Cannula today! Remarkable, considering she was intubated after her surgery just a few weeks ago. This means she will be on the same oxygen levels as Hanna, very low....This further suggests that her lung issues may be healing and, and she's on a great, upward trajectory.



Ashlyn with a mouthful of Boob!


Sara reports that Ashlyn is learning how to breastfeed FASTER than Hanna, and who knows; Maybe she'll just leap past her and hit the accelerator pedal to growth. She is VERY alert most of the time we are around now

All in all, Ashlyn is doing great!

Sara and I are walking for the March of Dimes on Saturday in Broomfield. We have a "Tiny Mights" team of friends, neighbors, and school folks joining us. Sara has raised over $1000 and the Journey School has hit $10,000....Most of the NICU nurses and staff are walking as well, but they are going to be at a separate location in Denver's city park. We will be wearing our tiny mights gear, capes, and all very proud...Pictures to come.

Thanks for the good wishes, prayers, thoughts, and good vibes....The girls are feeling the love!