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

Thousand Acre Heart -Part 11

I have always liked to write and always said I would love to write a novel if I had the time. In fact I still have a couple manuscripts in the works that have been lying around in binders and boxes collecting dust for many years. You would think that being in the hospital for months on end would have afforded me the time to write something meaningful but inspiration was sorely lacking! I did write letters though. Even though I saw Kirk often sometimes I would write him letters and send them in the mail, handwritten letters were so retro, even back then! I thought it would be fun for him to reach in the mailbox and get something other then a bill. They were ridiculous letters just meant to be funny and I would even address them in unusual ways. I came across one recently in a box of pictures. It was addressed to Mr Craven Moorehead. Some of you won’t get that and some of you will get it and not be amused. Judge if you will but I can assure that if you spent as much time on your back staring at four walls as I did you would do anything for a laugh. Anyways the letter in question was largely about “Nipplegate” otherwise known as Janet Jackson wardrobe malfunction. Obviously a cheap publicity stunt because when Janet Jackson stopped flashing her nipples she abruptly disappeared from pop culture. Besides the occasional mention in a rag mag about her weight gain or loss, no nipple…no mention! The letter was dated February of 2004 right after the incident at Superbowl. In the letter I confessed to my own unfortunate wardrobe malfunction where my hospital gown slipped off the shoulder exposing my nipple to a young , wide eyed intern. I then preceded to tell “Craven” that after my initial embarrassment about the incident I decided to use my  nipples to my discreet advantage and began flashing the man that delivered my breakfast in hopes to get an extra sausage the next day! This of course is not true…..well maybe it is, you will never know. “Evil laugh”

So as much as I recall I hadn’t completely lost it by Superbowl of 2004 but there was still plenty of time and wall staring to come. I did what I was told which consisted largely of doing nothing. I even tried to spend less time in the washroom when Kirk was around so that he and the doctors would not conspire to put a catheter in me. The nurses desk was outside of my room to the left. It was always a flurry of activity but even with my door open I couldn’t see what was going on. Every Monday I got to go on a big excursion to get weighed. The weigh room was directly across the hall and I was wheeled on a wheel chair, weighed and wheeled back! Do not turn left our right, do not pass anything fun, do not collect any smiles. Back to bed.

The nurses were at times my saviors. I would get pretty attached to the good ones and there were some that would come and sit with me for a couple of minutes at night, as there time would allow and just chat. Nights were the hardest, not tucking Morgan into bed, not curling up with Kirk. The nurses worked on rotation of course so when they were sent to another floor or wing it could be crushing. I guess I got used to the consistency of my hospital routine but I never got used to the people that came and went out of my life on a weekly basis. I have a profound respect for “some” of the doctors that treated me during my stay but I have to say that some of the nurses went way beyond the scope of their work by understanding how hard it was to be cooped up in a little room away from your family and treating me with such kindness and love.

One morning I was so excited because there was a craft program in the family room that I was invited to with the other ladies on my floor. I am not super crafty but I was looking forward to the social aspect (for my sanity) I was all ready to go at the designated time. I think I even put on lip gloss. The doctors came for their morning visit and delicately told me that the nurse had made a mistake and I wasn’t allowed to go to the craft program because I was not allowed to leave my room and sit up for any length of time. I know I tried to hide it but I was thoroughly devastated. It was like being 14 and getting grounded before the big dance that your crush was going to and being certain your best friend was going to dance with him. That kind of angst. My nurse for the week quietly felt my pain and she brought a lady on my floor who was in a less precarious position then me and able to wander the halls periodically to visit me. It was nice to be able to connect with someone else in a similar position. The lady who came to visit me was pregnant with twins. She lived in Cape Breton with her husband and three young girls under the age of seven. They owned a video store in their small town. Because of the distance and the fact that they were trying to keep a small business afloat her family could only visit on weekends. I couldn’t imagine how difficult it must be for her to be away from all her family and then to have the whole crew come visit and be cooped up in her little room. I think we were able to offer each other some comfort and understanding and I thank that wonderful nurse for recognizing my need to have some socialization. I never saw the woman again but I questioned my cleaning lady and found out that she had been put on complete bed rest as well. One morning the doctors only detected one heartbeat and during an ultrasound confirmed that one of her babies did not make it. She had to continue to carry both babies as long as possible and ended up delivering an early but healthy baby boy to the delight of his three big sisters.

My family and friends were fantastic and Kirk and Morgan still stayed with me as much as possible. Kirk tried his very best but I was grumpy and irritable when he was around. Looking back I had no control over anything and truthfully he probably felt much of the same thing. It drove me crazy that Morgan would come to the hospital with a big bag of candy from the Candy Bowl bulk store. She thought Daddy was the best and I thought that was complete idiocy. Lets take a four year old child, hop her up on sugar and stick her in a tiny room with a mother who cannot leave the room. There was a definite rift between us but I believed that when things went back to normal we would get better.

One night I was going crazy and Kirk tried to convince the nurse to allow him and Morgan to take me for a walk in a wheelchair around the hospital. I was only a couple of days away from self care so I didn’t think it would be an issue. Self care was in another wing of the hospital and it allowed for a lot more freedom. Moving to self care meant I had reached a point in my pregnancy that if I delivered the baby was not in any significant danger. I believe it was 36 weeks. It was still too early for me to go back to Truro because they were not equip to deal with a pregnancy that early. Anyways the nurse said “No way” and Kirk felt really bad. I asked him to take Morgan out for a bit, they had been cooped up in my stupid room all weekend and we all needed a breather. The minute they left I called my Mom and lost it. I cried my eyes out and told her I was going crazy. She assured me I wasn’t and I assured her I was. Mom calmed me down and even had me laughing and in a much better frame of mind by the time Morgan and Kirk returned.

I moved to Self care right before Easter and was allowed a certain amount of freedom which to my Mothers dismay I immediately took advantage of. Kirk allowed me to come to Walmart with him to help pick up some Easter stuff for Morgan. It was supposed to be a quick trip but I begged him to take me home. There was no reasoning with me, I wanted to see my house so Kirk made the hour long trip to take me home. He was pretty pissed when he found me in the bathroom with my big pregnant belly hunched over the tub scrubbing the dripping hard water stain under the spout with an SOS pad. I had already cleaned the toilet with bleach and was about to put in a load of laundry when he discovered me. He convinced me to halt the housecleaning and come lay down for a minute. He held me in our bed while I cried because I didn’t want to go back to the hospital. I had been away from home for over 3 months and all I wanted to do was tidy up and prepare for Haley coming home. Kirk comforted me and it was probably the warmest most honest interaction we had had in months. Somehow he convinced me to go back to the hospital, I recall a phone call from my Mom so it is possible that he enlisted help. I could see the light at the end of the tunnel though and that was positive. Self care was not as exciting as I anticipated. All those exciting interactions I had heard from my bedroom on the other wing of the seventh floor were certainly not happening over here. There must have been a lot of vacancy because when I was out wandering the halls it was about as exciting as a non alcoholic beer on a hot July day! Blah!

At 38 weeks pregnant they allowed me to go back to Truro but I wasn’t allowed to go to our house in North River because it was too far from the hospital. We stayed at my Moms but it was short lived. I think I had four days of freedom before Kirk dragged me into the Truro hospital. I was having headaches and swelling and according to the Doctor my blood pressure was on the rise. I tried to insist that my rising blood pressure was due to being in another hospital but as if I didn’t exist Kirk and the doctor discussed my immediate admission to the Truro hospital for the remainder of my pregnancy. I was admitted and put into a ward with two laboring mothers. I had been told to take it easy and get some rest and then I was put in a ward?? I assume Kirk spoke with the doctor who exchanged heated words with the nurse and in a flash I was moved to a private room.

Prior to my stay in the Truro Hospital  whenever there was talk about the “NEW” Hospital being built I would question why one was needed. It only took me a short time to understand. The Grace Hospital was like The Four Seasons in Comparison. My blinds were broken, my bathroom door didn’t close properly, cream of wheat for breakfast almost sent me over the edge and the nurse seemed to only make a visit just as I drifted off to sleep.

On Thursday April 29, 2004 Morgan and Kirk were in and out of my hospital room. He had bought her new sneakers and a soccer ball and they had played a bit on the hospital lawn. Played out, she gave me a big kiss goodbye and Kirk took her to the sitters because he had a doctors appointment. I hadn’t seen the doctor all day and he popped in the door at 4:45 and said five magical words “Wanna have a baby today?

To be continued……

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