Friday, July 12, 2013

Bittersweet Goodbye

Callie started receiving night nursing care when she returned home from the hospital a little over two years ago with a NG feeding tube.  At first it was essential... She had long night feeds through her tube and had to be watched throughout the night for safety.  If the tube came partially out while she was sleeping, formula could be pumped into her lungs and this was obviously very dangerous.  After 5 months, she was switched from a NG to G tube.  The G tube was so much better, but she is a very active sleeper and often became tangled in the cord, sometimes around her neck.  By this time Callie's nurses were already like family, so we were glad they could stay and continue to keep her safe at night.

The nurses became very attached to Callie and she loved them in return.  Miss Yolander joined us at the beginning of our feeding tube journey and over the course of two years watched Callie grow from 16 to 32 pounds.  She became very protective of Callie, often referring to her has her baby.  She was in charge of training any new nurses/subs for Callie's case and would give strict instructions for taking care of Callie, almost to the point of intimidating the new nurses I was told.  All of the staff at the agency knew about Yolander's baby.  :)  Miss Yolander also kept Callie stylish with super cute hairdos in the mornings.  Her teachers and therapists would comment on her cute updo's and I would have to confess that it was all Yolander.  

Miss Zeinab was with us on the weekends for nearly the whole two years.  She taught Callie her dance moves and spoiled Callie by letting her use her phone to play games and watch cartoons.  They were also known to party into the night on weekends.  We often heard giggles and laughter way later than we should have.  :)

Miss Christina was the newest addition to the team, but it quickly felt like she was there the whole time.  As a mother of four, she had a special touch with Callie and they were soon close.  They would read books together past bedtime and just seemed truly happy together.  This spring Miss Christina gave Callie a cute haircut and taught me how to do the same, although I have not been brave enough yet to give it a try.  

We were so fortunate to have such a great, caring nursing team.  At one point they picked up on her apnea symptoms and suggested having her checked out, which led to sleep studies and an apnea diagnosis, which lead to a tonsillectomy and adenoidectomy.  They also monitored Callie for seizures, although none happened on their watch.  Overall it was a huge blessing to have them be a part of Callie's team.  

It was bittersweet when we learned this part of Callie's care was ending.  At our last GI appointment, the doctor was thrilled with Callie's growth.  She is now firmly on the growth chart, holding steady at about 35% (up from 0%!).  Her most recent growth is definitely due to the introduction of a blendarized diet (which I wrote about here).  We had been slowly adding more calories during the day and cutting back on formula at night, and when I went over everything with the GI, he instructed me to move forward and cut the remaining night feed.  This was amazing news... After more than two years, Callie would no longer need to be fed by a tube at night.  No more hauling a pump, bags, formula and miscellaneous supplies while traveling. No more accidental bed feedings at home or on vacation (Hilton Parc Soleil… still so sorry about that!).  But sadly this also meant we had to say goodbye to Callie’s nurses. 

We miss you Yolander, Zeinab, and Christina.  Thank you for everything you did to care for Callie over the last two+ years.  We are very grateful for your service to our family and wish you the best.  <3 


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