Thousand Acre Heart Part 13- OH BILLY

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A message I painted in my kitchen as a reminder to my family that they don’t have to be ordinary. Never be afraid to be extraordinary!!

OH BILLY

*bilirubin

[bil′iro̅o̅′bin]

Etymology: L, bilis + ruber, red
the orange-yellow pigment of bile, formed principally by the breakdown of hemoglobin in red blood cells after termination of their normal lifespan. Water-insoluble unconjugated bilirubin normally travels in the bloodstream to the liver, where it is converted to a water-soluble, conjugated form and excreted into the bile. In a healthy person, about 250 mg of bilirubin is produced daily. The majority of bilirubin is excreted in the stool. The characteristic yellow pallor of jaundice is caused by the accumulation of bilirubin in the blood and in the tissues of the skin. Testing for bilirubin in the blood provides information for diagnosis and evaluation of liver disease, biliary obstruction, and hemolytic anemia. Normal levels of total bilirubin are 0.1 to 1 mg/dl or 5.1 to 17 μmol/L.

I love the springtime when everything is fresh and new, trees are budding and color is being restored to the world. The anticipation of Spring is not unlike having a new baby. You experience all the stages and although full bloom is perfection you secretly want to enjoy each stage as long as possible.

We brought Haley home in the Spring.  The second week of May. She had to spend some extra time in the hospital due to sheer incompetence.  I had a male nurse who seemed like he was playing the part of a nurse in a reality show, and certainly not a good one!! I didn’t breastfeed with Morgan so on top of the fact that it was near impossible to try to breastfeed a jaundiced, sleeping baby I had lots of questions. The only answer I got from my nurse was a confused look followed by a muttered “You will be fine” as he walked out the door. The extent of his check ups were to awkwardly lift my blanket just to drop it as quickly and say “You are OK…right!?” I felt more then a little uneasy with him and suggested that maybe I could have a nurse that was familiar with breastfeeding. He ignored this request with a blank stare. I felt that he was not anxious for anyone else to know about his extreme shortcomings in his chosen profession. I felt slightly sorry for him until he dropped the ball in a very big way. My doctor left explicit instructions when he left for the weekend that if  Haley’s “billy” levels were up that she was to be put under the lights immediately.  The instructions were communicated to the ward staff, to me, and noted on my chart. It was cut and dry! When Haley’s test results came back with the inevitable news that her “billy” levels were elevated the course of action was clear. I am not a medical professional but I had been through this with Morgan and I understood the importance of getting her under the lights as soon as possible. Nurse Dolittle and I did not share the same of urgency in regards. I inquired about the lights, asked about the lights, insisted upon the lights, demanded the lights, but to each action I got the same result one would get from banging their head against a wall repeatedly. Upon my repeated insistence I was told the lights were in a construction area and could not be accessed. I asked for a doctor, another nurse, a passerby but my best option was hoping for a sunny day to sit her in the window. I left a note for my favorite nurse Beth at the nurses station. Beth had assisted with all my children’s births and she was amazing.  Unfortunately she had the weekend off. She woke me at 5 am Monday and I anxiously recounted my plight. I had spent a very stressed out weekend and I was as happy to see her as a five year old waking to find Santa. She assessed the situation in her head for mere seconds before heading out the door so fast her Super Nurse cape got stuck in the door. She returned quickly with a beautiful set of lights. She downplayed her Super Nurse skills when asked how she managed by replying, ” I lifted the plastic divider, I crawled under, I wheeled the lights out” So simple, so awesome. We both knew the damage was done though. If your broker calls and tells you to sell failing stock you don’t wait for three days and then wonder about the huge loss. There was time to make up so initially Haley was under the lights around the clock. Her “billy” levels needed to be brought down and she had continued to lose weight. I was scared and distraught. I can’t imagine how parents of children in Neo Natal must feel waiting for the tiniest of milestones. I just wanted to bring my girl home. I knew that even if the “billy” levels stabilized that Dr. Chalmers would never allow me to take her home until she gained weight. The nurses suggested taking Haley to their station so I could get some rest but I insisted she stay with me florescent lights and all! Breastfeeding continued to be an impossible challenge as Haley was too sleepy to bother with eating. If I managed to get her latched on she would fall asleep quite quickly and I would doze off and feel all sorts of guilty. I was fixated on getting her to eat as it was about the only thing I had any control over but my attempts proved to be pretty futile.  Luckily for me I never saw Nurse Dolittle again and I was blessed with a team of exceptional nurses to keep me calm and informed. There was a senior nurse on the Ward who appeared looming and more then a little scary. Her assistance was sought in getting Haley to eat. Her demeanor, at first overbearing, won me over and I knew quite quickly that deep down she was a soft nut in a tough shell. They hooked me up to a breast pump which could better be described as an industrial milking machine. It milked me, I bottled the goods and Nurse Notsoscary would coax precious Haley into eating little by little. She managed to get more into her in one feeding then myself and all the other nurses had for days. I felt the promise of progress. The steps were little but the more Haley ate and the more time she spent under the lights I was able to get her to feed here and there for short periods of time. I am thinking back to how incredibly delicate she seemed, tiny featured and curled up in the fetal sleeping position. I can vividly recall the news that she had began to gain weight. I was elated! It was a slight amount but it is the step we were all waiting for.  The next day I had our bags packed and I was ready and excited to go home when Dr. Chalmers popped in for rounds. He was happy for the progress but not satisfied with her “Billy” levels just yet. This game continued for several days where I would have us packed and ready and Dr. Chalmers would inform me “Not Yet” He agreed to release me but Haley had to stay. I wasn’t about to leave without her! One cheerfully sunny Friday Dr. Chalmers was feeling generous and noting with familiarity my packed bags he offered a compromise. Haley and I could go home if we agreed to come into the hospital everyday to get her blood work taken. The hospital was a fair jaunt for us but at that point I would have agreed to come to the hospital three times a day. I WAS FREE!!! FREE from four months of hospitals and FREE to go home with my family!

 

Doll on a music box

Haley performing Doll on a Music Box at Edmonton’s 2013 Kiwanis Musicfest Junior Musical Theatre

Annie

2 thoughts on “Thousand Acre Heart Part 13- OH BILLY

  1. WOW, you must of been totally sick of the hospital & the dumb jerk. See it was all worth it in the end you now have your ”doll” , that she is. And I might add ;;Dr. Chalmers , one of the best. 🙂

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