ohhh the (beautiful) humanity!

The other day I was in the NICU by Mary Louise's incubator. Her nurse was talking to me saying what a good day Mary Louise was having and that she was so excited about her progress with feedings, etc. She then looked at me and said we must have some prayer network going for such tiny and early babies to be doing so well. I told her that I couldn't even hazard a guess anymore as to how many people were supporting us with positive thoughts and prayer. I said that there have been way too many times throughout all of this that the doctors have shrugged and said, we just don't have anything else we can do but wait and see if things get better - and all we had was prayer and positive thinking - and as it turns out, that's an awful lot. She agreed.

Today, after a long and fruitful visit with the babies, Brent and I went to his running group's crawfish boil. He's been running with them since January but with all that we've had going on, I hadn't met them prior to today. What a beautiful group of people they are! It was actually my first social outing since- hmm - the baby shower I was given at 19 weeks pregnant - so first in almost 3 months. I was nervous - waiting for my phone to ring. I feel sort of on edge all of the time - as if I must be ready at any second to make a life changing decision - we must be able to deploy at a moment's notice. (When we first came home, I was so nervous that I had clothes ready to throw on just in case we had to rush to the hospital in the middle of the night - and a few nights, I actually thought I might need them!) Anyhow, it was nice to meet some of the people who read this thing - and put faces with names. It's also quite humbling to know that there are so many people who take time out of their day just to read and think about our family - even ones that haven't met us. We are just thankful - beyond words.

As of this evening, David has been weaned down to a rate of 5 on his nitric oxide - this is down from 14 this morning - so it's quite an improvement. They have also been able to wean his ventilator rate and oxygen setting after placing a new tube as he'd outgrown the other and had some leaking this morning. He is doing well with his pedialyte feedings and they are progressing very slowly with them. He is up to 2 mls every 3 hours now - doubled since yesterday but a tiny amount all the same. The doctor hopes to start breast milk feedings tomorrow (again, a very tiny amount). His nurse this evening loves taking care of him which really means an awful lot to us. She was so excited to see us and tell us about little things he did last night - when he opened his eyes, how he slept - how he was most comfortable sleeping. He looked so content swaddled in his positioning aids (froggies) and wasn't fussy at all. It's really nice to know that he is sleeping quietly and comfortably at some point during the day.

Mary Louise's feedings have been increased once more to a rate of 16mls every 3 hours and she has done well with them all day today. She has been stagnant for the past few days on her vent settings so the doctor decided to "challange" her with a decrease and as of this evening, she was doing very well with a significant decrease in her rate and oxygen. This means that the little extra push made her take over a bit more of the breathing work - one step closer to getting rid of that pesky vent!

Unfortunately, chronic lung disease will be a long term issue for both of them as they are still dependent on their vents and oxygen. They are considered if they still need oxygen after one month of age. They will be one month tomorrow. This means that they will be more prone to lung-type infections and asthma type symptoms for up to the first 3 years or so of their lives. Basically, a simple cold, can for them, quickly turn into pneumonia so we must be very careful not to expose them to any external factors that might increase their risk of infection. There is more information on this condition if you google chronic lung disease of prematurity or bronchopulmonary dysplasia. Some of these babies are eventually sent home on oxygen. However, we will take this issue in stride (honestly, it would mean we'd be bringing them home right?)

So, we have had quite a day. My humble thanks to all those who read this, all who think about us and wish us well. I've thought of that old saying, "it takes a village to raise a child" and I feel like we must have the equivalent of a small country behind us. Our sweet babies - so loved by so many already. If they can one day know even a fraction of the incredible support they've been given, they'll know more than enough.