Much to my surprise, I am sitting down to write about this past week - my first back to work in three
months - with only positive things to report. Getting back to work wasn’t as terrible as I imagined (luckily, I really do like my job and I was reminded how incredibly blessed I am to be able to do it from home) and Daisy made a number of exciting advancements, while my mom was here to witness it all.
My mom graciously offered to come to Philadelphia from Boston for a full week when I returned to work and I am SO grateful she did. First of all, I hadn't laughed so much in a long time - we crack each other up endlessly and it was so fun to close out each day sitting side-by-side in our PJ’s on the couch with a bag of popcorn, laughing hysterically, passing Daisy back and forth with Bravo streaming in the background. Second, I was able to really focus on getting back to work and establishing a new routine.
I don’t know what I would’ve done without mom - she mastered Daisy’s NG feeding device, learned how to check the placement of Daisy’s tubes with a stethoscope and syringe of oxygen, changed about 98 diapers, washed dishes, cleaned, brought me coffee and tea throughout the workday, left little notes on my office desk, deadheaded my flowers, watered my garden, sent me little photos & videos of Daisy… and best of all, Daisy was in pure heaven spending the days with her “mamie.” My mom spent every waking hour holding her, kissing her, singing to her, dancing with her, taking her on walks through the neighborhood and reading to her. By the end of the week, Daisy was gazing into her eyes and smiling every time my mom kissed her cheeks.
While mom was visiting, things seemed to finally “click” with Daisy in the feeding department. This is ENORMOUS news because we were told there was a chance Daisy would never, ever be able to feed without a tube. During Daisy’s stay in the NICU, a swallow study showed that when she ingested liquid orally, it ended up in her lungs rather than her stomach. Given the dangers associated with aspiration, it was recommended that we stop trying to breastfeed or administer a bottle and we transitioned to full-time feeding by nasal gastrointestinal tube every four hours.
Doctors thought there was a chance that perhaps her brain was failing to send the proper signals to the flap in her throat that prevents food from going down the windpipe - and that she may never gain or regain this brain functionality. Doctors told us she might always have to be fed via a tube and suggested we consider a “G tube”, which is a tube surgically inserted through the abdomen that delivers nutrition directly to the stomach. While that option would’ve been less work for us, we refused to give up hope that she would feed normally and insisted on keeping the NG tube through her nose.
Last week, we had a repeat swallow study which showed Daisy was starting to swallow liquid correctly when fed orally. Getting her to take a bottle was quite difficult, but, the small amount of barium she ingested was enough to show via x-ray that her swallow was working. We were ELATED.
The speech therapist then gave us the green light to begin trying to feed her by bottle - just a few CC’s at a time - once a day, and suggested we try to introduce the breast twice a day. At first, this was challenging as this is all new territory for Daisy. She'd done only a handful of feeding sessions orally in the NICU before it was determined to be too risky. But our girl proved herself to be goal-oriented yet again. By the middle of this week, Daisy was finishing a 15-CC bottle and by the end of the week, she was breastfeeding continuously for 15 minute sessions without any swallowing or breathing issues.
To say that we are delighted would be an understatement. This represents so much to us. As a mother, I have felt a little incomplete without the experience of breastfeeding. As a new mom you are bombarded with clinical information and personal advice about the importance of breastmilk for baby and the connection made through nursing. My body has had a very difficult time producing breastmilk up until now because it has been exclusively through a pumping machine and at times has gone on “strike” and stopped producing anything at all. This made me feel so inadequate and like I was a failure as a mother. Beyond all of that, the thought that your child may never be able to feed like a normal person because of some neurological disconnect is absolutely heartbreaking. The progress Daisy has made just in this one short week gives us great hope for what is to come - with respect to feeding and so, so much more.
As ever, I believe the prayers, love and encouragement from our amazing family and wonderful friends have gotten us to this point. We know all of you are sending warm thoughts and positive energy in our direction and it continues to propel Daisy forward. She is advancing every single day and we are in awe of her fighting spirit and determination. Watch out world, Daisy Sullivan is getting stronger every day and she has BIG plans!
Love to all.