“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.