Days 68 - 72: It's been a great week!

It's been a few days since I've posted - things have been going really well! Lily's turnaround since three weeks ago can be described as nothing short of miraculous. It really feels like we're through the thickest part of the forest... so many great updates today! My regrets for not posting more frequently... you've all shared in the hard times, and I want everyone to share in the good times too - indeed, these are good times!! Here are a few pieces of great news:

- Lily is doing well on the nasal cannula! She was weaned down to room air (21% oxygen) for the first time ever, for a day  (the 4th), but has since been hovering around 25%. She tends to desat when she feeds, likely due to reflux. Apparently all babies have reflux - doctors may be giving her a mild form of prilosec tomorrow. Lily still has what's called BPD - Bronchopulmonary dysplasia (or CLD, chronic lung desease) - but it is getting much better. There is a small chance she could go home on oxygen. But we could live with that... the joy of having her home would far, far outweigh a few oxygen tanks around the house!

- Lily has started bottle feeding, and is doing a great job at it! It has been amazing watching her learn how to eat. Whereas full term babies are born instinctually knowing how to breast or bottle feed, preemies have to learn. The trick is something we all take for granted... knowing when to alternate between swallowing and breathing. Good news is, Lily's really doing fantastically at it :) Doctors moved her gastro tube from her mouth to her left nostril, so Lily is able to suck on a bottle. She has bottle fed for three days now, once each  day. She drank a whole bottle today (45mL) in ten minutes! Tomorrow she will start 2x/day bottles, with the goal of getting to 8 bottle feeds a day (once every 3 hours), at which point they remove the gastro tube - AND WE TAKE HER HOME!!!! Her attending physician wants to take it very slowly, though - adding a bottle every four days or so. (The risk of starting too many bottles too quickly is that she burns calories and loses weight from the work - she's not used to it.)

- Lily was moved to the LEAST critical area of the NICU today! It's great - fewer alarms, they play soft nursery music for the babies, and thankfully there is a MUCH, MUCH MORE COMFORTABLE CHAIR!! My one complaint about the NICU is that the chairs there are mostly 90-degree-angle rolling chairs, very uncomfortable when you're spending hours there, often holding a baby and not moving, every day! In any case, add that to the growing list of things I am thankful for - a more comfortable chair.

- Doctors and nurses, while they still won't say "you'll be home by XX date" - are starting to say things like "do you have a car seat for her?" - which is great to hear! They are talking more about post-NICU life, and it is so, so refreshing to hear. We are learnings how delicate Lily will be when she comes home - she will not be like a newborn baby. She is also coming home right at the beginning of flu season.

That brings me to something else Sara and I have been talking (and worrying a bit) about.  At one point, we were thinking that we could have some sort of coming home celebration, or even a christening celebration in fall. Doctors have told us that neither can happen given the fragile state of Lily's immune system. We have to be terribly, terribly careful with her. Doctors have warned us that even a cold can put her back in the hospital, given her lung conditions. I hate to say it but we are basically going to be hermits for the first few months of her life :( That being said, if Lily is doing well, we will be having a massive, tremendous party once spring comes around, and hope you will all join us!

Before I close out this post, I want to once again thank everyone for your support, well-wishes and prayers over the course of the summer. It has been one heck of a ride, and you've all been with us on it - Lily in the conductor's car of the train, just learning how to drive. And by the grace of God, she is learning - and the ride is getting less bumpy every day. Now it feels less like screaming at 90mph across the side of a mountain, and more like a subway ride... just waiting to get to the station. This nicu experience has been many lessons - it started as a lesson in hope, then turned into a lesson in courage...  it was a lesson in faith, and then again another lesson in hope - it has since been a lesson amazement, thankfulness, and patience.

OK, so... now on to some pictures!

Love my girls :) Can't wait to have them all in one room!

My sisters, Annette and Yvonne

Sleeping Beauty

My principessa

Thanking the Big Man, perhaps?