1.25.2015

Three years have passed – I don’t know if it feels like a minute or a lifetime. I am at a loss this year – words are turbulent in my mind yet putting them to paper feels, impossible. I hope we tell her story well; that we are assiduous in living out her legacy, and that we do so fearlessly, profoundly, while always cultivating joy. Hey Lil Bird…we love you, happiest birthday, our darling girl.

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I’ve waited a hundred years
But I’d wait a million more for you
Nothing prepared me for
What the privilege of being yours would do

If I had only felt the warmth within your touch
If I had only seen how you smile when you blush
Or how you curl your lip when you concentrate enough
Well I would have known
What I was living for all along
What I’ve been living for

Your love is my turning page
Where only the sweetest words remain
Every kiss is a cursive line
Every touch is a redefining phrase

I surrender who I’ve been for who you are
For nothing makes me stronger than your fragile heart
If I had only felt how it feels to be yours
Well I would have known
What I’ve been living for all along
What I’ve been living for

Though we’re tethered to the story we must tell
When I saw you, well I knew we’d tell it well
With a whisper we would tame the vicious seas
Like a feather bringing kingdoms to their knees

-Ryan Curtis O’Neal – Sleeping At Last || Turning Page

 

Joy.

There is a fear we will never know joy again, but that sounds a bit self deprecating doesn’t it? If you look for it, you can find joy almost anywhere. It may not carry the same weight as the joy we lost, but it’s joy nonetheless…and that’s something. When planning for our little bird, one of the most exciting things for me was breast feeding. I know that sounds weird, but as a nutrition nerd, I was thrilled with the science behind it. Without nerding out on you dear readers, there are SO many amazing things about it, some almost unfathomable. While we were in the hospital, they would store any production in time/date order so that when/if Birdie could feed regularly, they had an inventory. Once Birdie passed, Mick and I made the decision that I would continue to provide milk because there are moms who cannot and that in itself broke my heart. I was emotionally only able to continue this for about five weeks, but was very serious about getting it to someone in need. Yesterday we received a message from one of our midwives, the milk is now being used to grow a set of twins! There it is, a little piece of joy.

Hey Lil Bird…

“Hey Lil Bird” has become my favorite thing to say…to look down at the most perfect little girl and greet her is everything. She is perfect. She is the best parts of Mick and I. She has taught us so much about each other, about people and life and most of all about love. We love her beyond measure – our hearts have melted where hers should be…we have taken on a heartbeat for her, our blood runs where hers cannot and our breath is now more full because she came into our lives. Our darling girl has shown a strength and resolve beyond our hopes and has left a large imprint on everyone at this hospital and every one of you who comes back to read her incredible adventure, forever. My life is no longer measured in days and weeks and months – it is measured in seven glorious days of knowing Miss Birdie. I am forever changed, I am forever grateful for the many lessons she has taught and the impact of each rise and fall of her chest. I have watched my husband be a father – it has been my ultimate joy to see him love Birdie, to watch him advocate for her and love all over her. His adoration is undeniable and his strength is inspirational. I love his heart for her – I am so blessed to watch him in this way and know, he is ours.

Our Lil Bird passed away last night ever so peacefully. We were given the greatest gift – eight hours with her – no tubes, no machines, no alarms, no monitors – just our darling girl in our arms breathing peacefully on her own. It was as if all she had ever wanted in life was to be right there – close to our chests, breathing in sync with us. Neither of us can ever explain those eight hours to anyone, and we won’t. That time is ours to cherish for the rest of our lives until we greet Birdie again. She is whole. She is renewed. She lives because Jesus lives and what a gift that is to us. Even if you don’t believe it or think it’s just some way for us to cope with her loss – that’s OK. I know it’s true with all my heart. I watched her leave her body and I am CERTAIN she was welcomed into the loving arms of Jesus – there is a celebration for our little girl and she deserves all of it. She is the strongest, fiercest fighter and above all else she is our little bird forever and ever.

Her impact was vast and we may never know to what extent. Her impact at the hospital alone was phenomenal. Nurses came in on their days off to visit her, her cardiologists came and wept over her, doctors who weren’t even in her case came to kiss her goodbye. What a blessing to know your child, in such a short time, could bring so many hearts together. We will be changed by this. We will be broken for quite some time. We will also be joyful in knowing our darling girl lives freely and whole.

Miss Birdie …

Birdie Anna
Birdie’s song…

Another specific update

Just left our little Bird and things have improved slightly! The neonatologist actually said she had a good night. Stats: her O2 is high 70s/low 80s with only 26% assistance. Her b.p. is down in the target range and they’ve weaned her off the dopamine completely. Her kidney numbers look slightly better, yay! Her lungs are still coarse but are working normally. She’s got fluid but it’s not infection. They still have her on Lacix and her kidneys are still producing well. All in all a good night, praise the Lord. They are about to take her down to get her MRI. They are checking her heart, obviously, as well as her brain. With babies that have oxygen deficiencies and acid build up in the first 24 hours there is a risk for brain injury. They don’t suspect that there was any damage but they must check to be sure. Please pray that she doesn’t have ANY additional challenges to face and that they can get a clear course of action based on the MRI. Our girl is a fighter and God is so good.

Immediate/specific prayer:

Birdie has a MRI Wednesday at 11 to look closer at her heart – this is another step and helping the team choose her next step surgically. Even if they choose their path tomorrow, she still has some goals to meet. Her lungs are sounding coarse and they are working to clear them up. Her kidneys need to show they are filtering at a consistent rate – pee was a flowin today, it just needs to have better filtering marks in her labs. They are weening her off her blood pressure medication because she seems to be managing, but they do not want it too high. Her oxygen levels have been consistently strong. Misie is needing some sleep to recover and have the energy to be up with her for longer periods of time. Mick was able to help with her care this evening as Misie slept – he swabbed her mouth with breast milk, helped change her diaper, weighed her and took her temperature. Her nurses have been fantastic.

Birdie Anna

Our sweet and precious girl has made her entrance. She did so with some serious sass, and as expected, pomp and circumstance. I won’t go into the detail of labor, but say, it was long and drawn out and then almost instantaneous. We had the most amazing nurses, one in particular stole our hearts and stuck with us through it all. We had her for two of her 12 hour shifts and she specifically asked to follow our care to post delivery; she has even called us to check in after going home. She worked so hard and did it with such love and care, we were astounded.

Once our lil bird arrived she had some serious Oxygen issues – her levels we’re befuddling to the doctors. One of our amazing cardiologists who had already checked on us each step of labor, happened to be on call when Birdie was born. He also happens to be the catheter specialist which is the exact thing she needed. They ran a fetal echo on her and he saw quite a few vein abnormalities that were not evident in the fetal echoes in utero. There is also a duct that was open 3 weeks ago, has since closed unexpectedly. They worked effortlessly to stabilize her all while diagnosing the problem. After a few hours they came up with a plan and she went into emergency surgery. After four hours her doctor felt he accomplished what he needed, with the least amount of risk to her tiny body. He has placed three stents to strengthen veins and redirect some very backwards blood flow. He was not able to open the duct as it is incredibly risky – the part of her heart where it lies is the size of a peanut. They will discuss Tuesday how to not only proceed with that portion of her heart, but also her prescheduled surgery on the 30th.

She is recovering very well at the moment – she has gone from requiring 100% oxygen support, to 45%! He was worried her kidneys were stunned due to various complications that occurred, but so far her urine is looking good and urine means kidney function. We love that! There is always a delicate balance in recovery – serious ups and downs and we are doing our best to go step by step and not get our hopes up. She is a fighter, she is bigger than they expected and right now that is solely to her benefit.

We have been able to see her, albeit briefly, but she squeezed our fingers and her blood pressure reacts to our voices. Mick was able to swab her mouth with some breast milk as well. Her NICU nurses are fantastic and her cardio team has already surpassed our expectations. We are doing our best to rest up, especially Misie as her body went through quite a bit – and by a bit I mean, 39 hours of serious work and some serious craziness near the end. We are unsure when Misie will be discharged, either Monday morning or Tuesday if the OB fellow pulled some strings.

We cannot express our humility and thankfulness – the prayers, prayer chains, good vibes, positive thoughts and loving messages have been truly special to us. We are so touched and blessed by everyone’s support and feel all of it and see it in action. Right now we are trying to hit the most people with information in the most efficient ways. If a message or question is left unanswered,it is not personal, we are just surviving.

Love to you all!