So, we are starting to understand what they mean by this is going to feel like a "roller coaster" ride... here's another very wordy update...
I know not everyone who reads these updates knows us on a super personal level, but this past week has changed all that. We cannot imagine what it would be like to go through any of this, first, without faith in our Lord and Savior, Jesus Christ and second, without your prayers and support. Thank you, thank, you thank you. Although you may not see eye to eye with us on this, that is totally okay and in no way are we trying to force our beliefs on you. We just hope you can comprehend, but don't think you will ever know, how much you all mean to us and just how huge your support has been to us in this hard time. Probably the scariest time of our lives.
Today was a great day, for us, for mama bear, and especially for our sweet baby bear Lucille. We were reminded that Mt. Sinai has a free shuttle for patients, employees, etc. THIS, WAS, HUGE! As most of you know, we live between 95th & 94th on Second Ave, well the shuttle picks up to go to Mt. Sinai and drops back off at 94th street between First and... wait for it.... boom, Second Ave. This was so awesome, especially because Drea is still recovering and even walking short distances can be a challenge. God is good! We thought about it today and thought it was pretty cool that God hooked us up with our sweet apartment in this location almost two years ago, that is cadi-corner to our friends (who have been so gracious in watching Bess and more!!), and so close to this shuttle that we completely forgot existed until yesterday. So yea, the shuttle was an awesome "pick me up".
When we arrived to the NICU we noticed there was a gift bag on top of Lucille's "kennel". I know, I know, it's not a kennel, but I've had a dog for longer than I've had a child, so there you go... Drea prefers the fancy hospital term, "Isollette". The gift was from a mother who, THREE YEARS AGO, had a daughter in the NICU. She left us a pink beanie, a kit to make an imprint ornament of Lucille's hand, and the book "Guess How Much I Love You". It was so touching and encouraging to have this gift, words can not describe God's unbelievably PERFECT timing.
We spent an hour with our daughter today, touching her, singing Christmas carols, praying and getting updates from the NICU nurses. We got to look Lucille in the eye for a while, it was so great to see (that other eye will be sealed shut for a little while longer). What I thought was dark blue or brown yesterday, is this gorgeous blue/teal eye. Now, I know that is subject to change, but for the time being it is such a bright blue.
Drea asked the nurse at one point if Lucille cries and has a "voice", and the nurse answered saying that she could hear a very soft voice. Now, we did the math and know that PAPA's Voice + MAMA's Voice + How she "screamingly" came into the world, DOES NOT = soft voice; but we can enjoy it while it lasts.
OK OK, medical updates. The breathing tube: our little Miss Independent decided today that if the doctor wasn't going to take that damn breathing tube out, then she would do it herself. SO, my little doctor in training is now breathing through nasal prongs and has been doing very well on those ever since this morning. Now, we know she could go back on a breathing tube (no big deal if so), but c'mon did I say "fighter" or did I say "fighter"? On top of that, the doctors apparently gave it one more go at inserting the PICC this morning and it worked! When we came in to the NICU she was resting sweetly on her belly and was oooohhhhh so precious (see pictures below - we even caught a yaawwwnnn). No cords going into your stomach definitely helps you sleep better ;D. As for her heart murmur, she still has it and it did grow, but they are half way through round two of three of the medicine and still hopeful for it to close on it's own. Please pray that it will and that they won't have to do any procedures to close it. They can only give her three rounds total of the medication, so the Dr's will determine what comes next after that. In the next two days she will have a brain scan as well just to monitor development. The doctors have been great in helping us know what to expect and said that most likely she will have some blood in the scan but that is normal in someone so itty bitty. We are praying and hopeful that our little FIGHTER will continue to blow them away.
One of the best things to hear from our nurse today is that she has had FIVE excellent days for a 24 week old babe. Tonight we pray for SIX and can't believe that our precious little girl will be six days old tomorrow morning. Another great highlight/pick me up for today was that we got to have our very first family picture (see below). It put Andrea's heart, and mine, so at peace to have all these great updates in one day. The road is still a long one, and your support and prayers have been and CONTINUE to be huge for us in this process.
We just want to continue to ask you to pray for:
- Andrea to have a speedy recovery
- The grown up side of this (insurance calls, claims, etc.)
- For our Lucie-Lyn's heart murmur to close on it's own
- That she would be able to get her weight up
- For her to continue to stay on the breathing prongs
- For Lucie's brain scan to go well (in 2 days).
We also want to say Thank God that:
- Little Lu is on the breathing prongs now instead of the intubation
- The PICC was successfuly inserted and will not have to be replaced for at least a month so that she no longer has to have the IV's going into her stomach that were being replaced every 2-3 days
- She has had FIVE EXCELLENT DAYS!
Again, thank you all for walking through this with us, praying for us, and your thoughts and support in this time.
We love you all and are so very grateful to have you all as friends and family.
Rob, Drea, Lucille and Bess