People aren't kidding when they say those first few weeks are hard. Sleep deprivation, C-section recovery, the Pavlik Harness, trying to figure out breastfeeding, (and then trying to figure our how to breastfeed a sleepy newborn) and worry over her pooping and weight gain were just a few of the challenges we faced in the beginning. Hearing about her hip dislocation was very discouraging especially when we learned she would have to wear the harness 24/7 for 12 weeks. I couldn't figure out how I was supposed to take care of her with this brace on all the time. Diaper changes seemed impossible (especially dirty ones), dressing her was going to be very limited, baths would be just spot cleaning, and holding her, swaddling her and even nursing her all had to be modified to work around the harness and avoid pulling her hips in. Not to mention, the C-section made all of these newborn care tasks difficult as well. On the day of discharge, I made sure they took an accurate weight (taking into account the weight of the harness) and found that she had dropped from her birth weight of 7 lbs1oz to 6 lbs 9oz. This didn't concern me at first because weight loss is expected in the beginning. I became more concerned, however, that she went a long time without stooling and her poops were not transitioning to a yellow color like they were supposed to. So when we went in for her NB check at 5 days old, she weighed 6 lbs 8 oz. The Dr. wasn't too overly worried about her abnormal stooling patterns but did check a bilirubin to make sure that wasn't a problem. That came back normal.
On Friday 3/4 (her due date) she had 2 appts, one with orthopedics and another one with her pediatrician. The Orthopedic said everything looked fine and would like to see her back in 2 weeks to readjust the harness as necessary. At the pediatrician, we had a weight check which showed that her weight had dropped to 6 lbs 6 oz...even though I felt that her feeding had improved. I was also concerned because she still wasn't pooping but maybe once a day - sometimes not even that and they were still dark green (should be yellow at this point). But her pediatrician again felt everything was ok and that it would soon start moving in the right direction. We followed up again on 3/8 and her weight was still 6 lbs 6 oz. Technically she had gained 0.08oz so the pediatrician felt this was at least "some" weight gain and was ok just giving her more time to catch up. I, however, still felt anxious that I was doing something wrong in feeding her. I made sure I was feeding her every 2 1/2-3hrs and waking her up from naps and during the night as necessary to make sure she was eating well. Things started to improve and I soon felt sure that she was just slow to gain weight but never expected anything to be seriously wrong.
Then on Friday 3/11, when she was 2 weeks old, I got a call from the Pediatrician and was shocked when she told me there was an abnormality with Kelsie's newborn screening test. I had honestly forgotten all about that test, because from my perspective, my baby girl was just perfect and I never imagined any of those scary diseases would affect her. Then the Pediatrician asked if there was anyone here with me...I said "no"...and she asked if I wanted her to call back when Nathan got home to tell me the news....and of course I said no, if there was something wrong, I needed to know. So she then proceeded to tell me that Kelsie's screen for Cystic Fibrosis came back elevated so a follow-up DNA test was done which showed 2 copies of the gene mutation for CF. She said this meant it was "highly likely" that Kelsie has Cystic Fibrosis but she would need a sweat chloride test to confirm. She had already made her appointments with a Pulmonologist and Nutritionist. This short conversation just sent my world spinning. I could hardly even comprehend what she had just told me but at the same time, the stories of all the kids I have taken care of with CF flooded my memory. I simply could not believe this was happening to my little angel. I immediately called Nathan sobbing and he left work that second, keeping me on the phone the whole way home. As soon as he got here, we got on the phone and called the Dr back so she could go over things with Nathan as well. Shock, devastation, overwhelming sadness, anger, and disbelief set in and made for the most difficult night I have faced.
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