Christmas blessings and New Year hopes

“I thank God for this most amazing day: for leaping greenly spirits of tress and a blue true dream of sky; for everything which is natural, which is infinite, which is yes.” – E.E. Cummings

Christmas has come and gone, and I am sitting in the quiet dark of my living room reflecting on the magic that inevitably comes with this time of year. This was to be my first time hosting my most beloved holiday, and we were expecting relatives from both sides. I had planned our week…Zoo Lights, the candlelight Christmas Eve service at church, lots of cookie baking, holiday feasting, and of course, Christmas morning! I had bought and washed matching Christmas footie pajamas for the girls to wear on Christmas Eve…pink with reindeer and Christmas trees in alternating lines. It was the first time I had ever bought matching outfits for the girls, and the visions of their morning cuddles and excited squeals in identical fleece were so clear in my head. I could not wait! But like so many things in life, this week didn’t go quite as planned. In fact, it didn’t go at all as planned.

Eliza went to the doctor one morning to confirm what I had expected. She had an ear infection that needed antibiotics. Two days later on Christmas Eve, Amelia woke up from her afternoon nap with a mild fever. Just like that, Christmas Eve service was out. And four hours later, my morning dreams were really dashed…replaced by midnight laundry and baths to wash away all the sick. I hardly slept that night, but I still awoke with a glimmer of hope that the bug had run its course. It hadn’t. But despite all that, it was a beautiful day. It really was. There may not have been matching pajamas or sister cuddles, but the love was all there…the family, the traditions, and the moments of taking it all in and being blown away by the bounty of what we shared under the tree and around the table. I had my husband and my girls all day long with lots of help and comic relief from their Pappy, their aunts and uncles, and even four excited dogs.

As I reflect on it, I realize that our Christmas was perfectly in step with our 2014…a year that taught me lesson after lesson with one theme interwoven throughout: life is messy and hard and completely unpredictable, but it is also so good. And those two truths don’t alternate…it is everything all at once and all the time. And I think that’s in thanks largely to the people we share the journey with. I feel incredibly blessed for those people and so thankful to end this epic year in the company of so many of them. But more than anything, that joy and peace – peace that surpasses all understanding and certainly all circumstance – comes from the One whose birthday gives that precious holiday its name. Blessings to all in this special time of reflection, thanks, and hope. I can’t wait to see what 2015 has in store!!

Our brutiful journey in feeds

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” – Maya Angelou

So much has happened in the weeks since I last posted. Eliza went to the endocrinologist and was given the go-ahead to continue her daily growth hormone injections that seem to be helping so much, and later that same day, she decided to celebrate by pulling her NG feeding tube right out. I replaced it only to have her pull it out again before the day was done. Okay, I thought…go for it, girl! And she has!! It has been over three weeks, and she has continued to take all her required calories orally every single day! And while she sometimes becomes uncoordinated, especially during her evening feeds, she has shown no signs of significant aspirations. Incredible!

Witnessing Eliza’s journey through feeding struggles has taught me so much…the power of perseverance and the power of letting go. It has been hard and frustrating and good all at the same time, and it marks the journey for me in so many ways. It was lack of feeding that first brought us to the NICU and kept us there, so it is wrapped up in the frustration and feelings of defeat around that. But it’s also the element that brought me my village…introducing me to some of the most sincere, caring, brilliant women I have ever met.

Since we lived in the hospital, my whole world while I was there revolved around her feeds day and night. At the sound of my alarm, I would stumble half-asleep down the hall, through security, and into her darkened room to put her to breast. In those quiet moments, I sang to her and talked to her and wept over her in prayer. I cried a lot during our feeding sessions. But I also laughed a lot…more that at any other time spent in Room 8. The day feeds were filled with lighthearted conversation and rooms full of incredible, loving women…women who would rub Eliza’s head and shoulders to keep her awake while I tried to nurse and who would cheer me on when it worked and when it didn’t. I will never forget the moment we got our first big number after placing Eliza on the scale for her post-feed weight. It was a party complete with hugs, tears, and actual happy dances. Or the day that the feeding specialist drove in on her day off to encourage me to keep up our nursing schedule when weight loss and fear prompted me to cut back. As Momastery’s Glennon would say, it was simply brutiful…all those moments of brutal agony when the scale registered no gain after a 40-minute feed and all those moments of beautiful hope and support whether it did or not. I was the one nursing, but we were all in it together for feeding times, it seemed.

Even after we left the hospital…months later in fact…that village continues to show up. There is the lactation consultant who checked in when my supply got low and who came to my house with fresh-picked apples and zinnias, the feeding specialist who called from Poland when she heard we were considering a swallow study and again after the NG tube had been placed, and the NP who reminded me of how precious and powerful it was to have had the rare experience of nursing a baby with PWS in the first place. Because it’s easy to forget that piece…to dwell in the grief of the end instead of in the gratitude that it did, in fact, happen. We may not have been able to get all her calories in that way, but as so many of those women told me, feeding is about so much more than transferring milk. There is so much truth to that! And while there was intense grief at the end of that portion of our journey and again at the placement of her feeding tube, I will cherish those moments…all of them. The good and the bad rippled out to people who will forever hold such a tender place in my heart, and for that, I am so very, very grateful!

I don’t know where the ripples will land, but they have already brought me to places I never imagined…speaking at a feeding conference, coauthoring an article for a medical journal, even writing this blog. I have deepened my relationships with friends and family and have felt more connected to others and to God than ever before. This journey continues to surprise me, and feeding’s role in it seems to stand out as landmarks of fear and frustration but also of gratitude and hope. I am in awe of Eliza’s success but not entirely surprised by it…she arrives to this tube-free place five months later on the shoulders of all who have carried her, bolstered by the prayers and love that know no barriers.