Thursday, May 5, 2011

Cinco De-laney!

Today started out sort of rough. We were really tired from the night's caretaking. We also experienced some blues, to say the least, as we reflected on what our sweet baby was like before all of this started. Despite that beginning, the day ended with feeling very productive.

As we woke up today, as if we actually get solid stretches of sleep, we were just exhausted. We do try to alternate mommy/daddy duties but last night we just needed to tag team. Delaney had been spitting up slot recently and my anxiety was really high as I checked on 'little d' often. We instituted the continuous feed (to make digestion easier on her), which in theory could give us three hour stretches of sleep. I just couldn't trust it, especially since we've grown accustomed to being hyper vigilant every half hour to an hour.

Being so exhausted led to a discussion about being overwhelmed by our circumstances and exasperated that we just broke down. We spent some important time together mourning our losses. Lindsay is frustrated, angry, and dissapointed. We had just started to get the hang of parenting and found a rhythym for how to deal with all of the nuances of child rearing and everything crashes down around us. I am sad that we were just starting to get all this communication from her, albeit nonverbal, but it was so rich. She would sit in my arms and bring out this smile that would just melt you.

Because we believe that we can get her back to where she was, we took steps today to put her in the best position possible. We are giving her every chance she can get. Our wonderful doctors at Birmingham Pediatrics got the ball rolling today with Beaumont Home Care Services. We set an intake appointment for tomorrow, and we should get a very good idea of what to expect from there. Molly O'Shea and Stacey Wittenberg there are perhaps the best doctors I've met, they care about their patients and their families like no other practice I know. I can't say enough good things about them. They are truly champions in Delaney's care and we couldn't do this without them.

Also tomorrow, we will be headed back to Children's Hospital to meet with our Cardiologist, Julie Summerfield - another Angel. It will be a follow up to the Heart Catheterization to ensure that the Coarctation repair is holding. If not we may need to be scheduling open heart surgery to make a more permanent repair of the Coarc, and the additional holes her the heart.

Apart from those exciting developments we were visited by several wonderful people today. Rev. Schlak from Birmingham Lutheran Redeemer was here. He's such a wonderful person, we always feel better having spent a little time with him. He's such a good listener. What is also so inspiring to me is to be able to pray with him, you just feel empowered and touched. More of the warmth that we need in this home.

Our good friend Nicki lifted our spirits with breakfast and great conversation, she was able to get us to laugh which is so healthy and curative. It was also good to hear the wonderful news in her life, she really deserves wonderful things too. It was fun to see how excited she was to finally hold her for the first time, and was definitely "drunk on baby" - giddy herself over all of the expressions and movement. What was really cool is that Delaney actually let out a slightly more powerful, yet brief, cry than we have heard in a long time. It was fun that Nicki was here to witness it (more fun tricks, later).

My mom swung by briefly with fresh cut tulips, and soup from one of my childhood "neighborhood moms", Barb. Of course my Mom is always good for a smile and shot of positivity too. Love you, Mom!

We were also visited by a lovely parent from Groves High School, who came with good food, warm smiles, and heartfelt prayers. She was touched that we allowed her to be a part of Delaney's healing while we were glad to bring her into our home.

Most importantly, both Lindsay and I held Delaney for extended periods of time today. We took the advice of an old friend Laura, who happens to be a Psychologist (profession after my own heart) and gave us some really concrete activities we can use with Delaney to stimulate brain activity and development. Save the specifics, we are starting to see some results. More often than before she moves her arms and legs voluntarily, many of you have see the video I posted on Facebook (I will soon post pics and video here on a separate post) it was that, times ten. She turns her head from side to side, she arches her back to stretch, probably the most noticeable and impressive motor behavior using all limbs at the same time. Her yawns have become more distinctive and cute like those of old.

All of that is wonderful and gives us butterflies every time we see it. However, today as my mom pointed out before (perhaps even a bit prematurely) - the EYES have it. More true now than ever. We know that at least part of the time she was making direct eye contact. She even started showing signs of 'tracking' or 'following'. I was just giddy.

We know that these are all positive signs of the power of prayer, the human spirit, and the magic of babies. Much like catching a wave we are jumping at every swell, encouraging everything we are seeing. I studied behavioral psychology at Western Michigan University, and one rule that stands out in my mind: "the best predictor of future behavior is past behavior"...we have every reason to beleive that this will only continue. The behaviors will increase in frequency and duration, and likely will stimulate a synthesis of new behaviors.

We fervently hope that you will share in our intentions that she continue to regain her abilities. We hope and pray for the day that she relearns the ability to blink, and how to cough, suckle, and swallow. These basic skills would help make her life so much easier an go a long way to reconnecting to her family.

We love you all for the support, we can't say it enough.

Be well,
B & L & d

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