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I asked myself over and over. Why was I putting her and me through this? When I knew in my heart of hearts that she was capable of breastfeeding? There had to be a better way. I was the kind of tired that makes your insides shake and sitting on the edge of my bed crying into my hands and the only thing I knew for certain was that I wasn’t putting that tube down her throat again. We would try anything but not that. Not again. ……..That night after about 20-30mins she latched and fed and I sighed and tried to enjoy it and not think about what tomorrow would bring.
I never did put that tube back in.
I soon discovered that T would take my milk in a bottle easier, as she was having real difficulties actually latching onto the breast, despite much rooting and a strong urge to suck. When my good friend and LLL (La Leche League) leader came to help, I showed her how T would root like crazy, back and forth over my nipple, but not open her mouth and latch. Pressure on her chin didn’t work, it was impossible to get her to open her mouth enough.
Watching her with a bottle we could see that her suck reflex was triggered as soon as the teat reached her soft palate. The problem was, that you can get a bottle into a baby’s mouth without their participation. This was not the case with my nipple! We wondered if not having a sense of smell was hindering T’s efforts and decided that perhaps we need to reassess how important a role scent and smell play in breastfeeding.
We still occasionally got lucky and she would feed from me. I began using the bait-and-switch method. I would get her to begin sucking on her bottle or dummy and try and quickly swap it for my nipple. The exaggerated latch or ‘flipple’ technique helped too, as did trying when T was sleepy. I often wished I had an extra set of hands, as T latched best while I was walking and I still had to make sure not to push on her trachy, and we’d have to stop regularly to suction her tube. My trusty ring-sling came in very useful. Each latch took an average of 20mins to achieve. I’ve honestly never worked so hard in my life. Every success felt like the Holy Grail, like climbing Everest, like my Sistine chapel.
The failures hurt in a place deep inside. They were more than failures, they were rejections. The agony of holding your own baby, offering yourself and being rejected was painful on a cellular level. When I had tried every position and trick I could think of, I would sink down into the chair, give T the bottle it felt like she was crying for, and dry my tears until it was time to try again.
These days seemed so long and were only possible due to the incredible support of my extended family. They cooked, cleaned and looked after me and my toddlers, while I dedicated my time and efforts to our newest member. I will be forever in their debt for the way they cared for us during that time…… then something happened that strengthened my resolve to continue -something so wonderfully powerful that I believed we could move mountains every time it happened …T started smiling. She started and did not stop!
Slowly, (agonizingly slowly to me) the tide began to turn and we had more successes than failures, I remember realizing one day that T had had more breastfeeds than bottle feeds. It was just the sign I needed, I was spurred by our milestone and so we continued to work hard …and my family continued to keep my household running …and T continued to thrive.
Unbelievably three weeks after being discharged from NICU, fully tube fed, T was EXCLUSIVELY BREASTFED!! She was eight weeks old, and I no longer had to express milk or measure feeds. I was done with tubes and over bottles. We had made it. We were living our impossible dream. Our baby, born without a nose, who breathes through a tracheostomy is still exclusively breastfed at six months. She made it without fortifier, without thickener, without formula. She thrived without introducing solids early or weaning my toddler. I believed in her and in my body’s ability to feed her. I believed in breastfeeding and it came true.
We even celebrated our first tandem feed recently with Miss C (T’s trachy had previously made positioning tricky for tandem feeding) An another amazing moment that I never thought we’d get to experience. I was so proud of us and so full of love for my babies, it was beyond anything I had dared to hope for.
We would face more challenges in the coming months including, a traumatic surgery on her eye, that caused her weight gain to slow and subsequent pressure from our dietician to offer solids and or fortifier again. But we held firm and now at six months she is back on her original centile line, has met every milestone and continues to develop normally in every other way. She brings so much happiness and love to our lives, we can’t imagine life without her.
Our consultant is planning to de-cannulate T (remove tracheostomy) before her first birthday and any nasal construction will likely not be until she is a teenager. There is still much uncertainty about the future and our options regarding her face but these last months have shown me that she is stronger than we could have ever hoped and that with the right support, sometimes things aren’t as impossible as they seem.
Read this post and more like it over at Grainne’s blog, birthingandbreastfeeding.wordpress.com !