I love getting Christmas cards, even though I rarely send them. My favorites are the picture cards with the smiling faces and kids dressed in red and green jammies and pets wearing Santa hats, with the fake snow and beautiful backgrounds. Recently my sister-in-law asked me to send her a family picture and a few sentences about each of our children to include on the Christmas card for my husband and brother’s business, Bisping & Seyler Tree Service LLC. I wasn’t sure what she had in mind as far as “sentences” about each of the kids so I had her send me her examples. She eloquently described each of her beautiful children and what sorts of things they did in 2016, milestones they reached, and activities they enjoyed. I sat down to write about my children, our 2016, and I stared at the screen with tears streaming down my face. Jokingly (sort of), I sent her something along the lines of the following:
“Belle has spent her entire life in a Children’s Hospital. She’s been poked and prodded, tied down and scoped. She has an incurable digestive disease, but somehow managed to be freaking awesome at nursing. She marches to the beat of her own drum and is full of surprises.
“Jonah, who was nearly potty trained 3 months ago, has completely digressed. He hates Mommy and Daddy being gone all the time, and throws temper tantrums like it’s his job. He bit a kid at daycare and recently peed in the middle of his cousin’s floor. He adores his little sister and nearly gives us a heart attack trying to keep him from “loving her to death.”
I sent it to her, half joking. half serious because let’s be real, us Bisping’s aren’t having our finest moments this Christmas season 2016. It seems fake to pretend other wise, especially after the events of the last week of our lives.
MY DARKEST HOUR
Last Monday morning, visiting nurses came to draw blood for Belle’s weekly labs. After drawing the blood, she was unable to get anything in or out of Belle’s line. After they tried for a few minutes, I insisted we call 911. I had asked Belle’s doctors about a million possible scenarios of things that could go wrong before we were discharged from the hospital and they had told me she could become hypoglycemic within 15 minutes. This is because they had her on 24 hr TPN since she is so young. They had basically trained her body to get a constant dose of sugar, so she hadn’t had to regulate her own sugar at all.
After calling 911, I began nursing her and, thankfully, her sugar dropped slowly and steadily instead of crashing. We knew we didn’t have enough time for an ambulance, so she was flown by life flight to Pittsburgh. Joey came home in the meantime and he flew with her. Her sugar continued to drop, and on the helicopter, they had to drill into her leg to place an IV in the bone. Thank God they did because sister takes forever to get an IV into her veins, and they always have to get the head lady from the hospital’s IV team to get it. I know my baby girl and it never would have happened in time.
In the ER, they tried multiple times without success to clear the line. What we didn’t know at the time was that the line was kinked, not clotted, and there was nothing anyone could have done to fix it. It was a mechanical problem and it needed replaced. Belle was then scheduled to get a new line the next day and we were admitted back up to our old home on 7B.
The next day I took her downstairs to the OR to get her new line. Although it involves accessing a major vein, it is a pretty common outpatient procedure. I wasn’t worried. Surgery took a little longer than usual. When they finished, I was called down to talk with the doctor. I still wasn’t worried. When I got downstairs, however, I saw the surgeon whom I had met only hours before sitting in a little room waiting for me. Immediately, I was worried. Bad things happen in little rooms in hospitals. I’ve come to know little rooms all too well over the last few months and when you get called into one, you better take your tissues and your big girl pants because you’re going to need them. You have to be strong in hospitals’ “little rooms.” The surgeon looked worried which made me even more worried. He told us (thankfully my dad was with me all day), that the new line was placed successfully and working. He kept repeating how it was working. “So what’s the problem, then,” I asked him, knowing there was more to the story. He explained that when they removed the old catheter, a portion of it broke off. He told me it free flowed down through her heart and into her little body, somewhere, though he didn’t know where exactly at the time. He told me it was very, very serious. I asked him if she would make it, and he didn’t answer me.
I wasn’t strong in that little hospital room, and I certainly didn’t wear my big girl pants.
A few minutes passed and another doctor came in and told me he was the “intervention radiologist.” I don’t know what that means exactly but I know from teaching that interventions come when something goes wrong and needs fixed. He told me they located the broken piece and that it had settled in her liver. He needed me to pull myself together and sign a consent form. I did, sort of, and off he went. It was a strange thing to look the man in the eye who would or would not save your child, watch him walk out the door, and know it was completely out of your hands. My dad and I walked back up to Belle’s room on 7B, stunned and silent.
The next hour is too personal to share, but I will say it was, most certainly, the darkest hour of my life.
When the doctors finished, they both came straight up to our room. They told us they accessed the major vein where the catheter had settled, through her thigh, traveled up the vein, and retrieved the piece of catheter from her liver by pulling it out of her leg. They showed me the entire procedure on film. They felt confident she would be fine without any further complications from the incident.
Belle’s intestinal care doctors came to see us soon after the surgeons left. They were stunned and emotional as well. Her head doctor said he had never seen that happen before. Another doctor had seen it happen two other times. One child lived, the other did not. They explained to me how “lucky” we were that the catheter settled in her liver and that it could have taken one other path, to her lungs which would have very likely killed her. They even drew us a diagram on the white board to explain. Anabelle was wheeled back to the room about 30 minutes later and in typical Belle fashion, was wide-eyed, looking around like nothing happened and that she hadn’t nearly lost her life a half hour before. She is beginning to get a reputation and her doctor took one look at her and said, “Yep, that’s Anabelle for ya.”
GOING HOME…FOR NOW
The next day, Belle was doing well and they told us we would have to go home. I was pretty hesitant considering the seriousness of what he had just experienced but reluctantly agreed. We were scheduled to discharge in the late evening and as we were getting Belle ready to put in her car seat, I noticed her line site didn’t look so hot. I called the nurse, who called the doctor in, and both agreed it looked infected.
You have got to be kidding me…
We ended up staying again that night. All cultures came back normal, with no fever, so they discharged us the next day, Thanksgiving evening. We got home just in time to eat some leftovers my aunt had sent out, put the kids to bed, and crash. We spent two glorious days at home. When we woke up yesterday morning we noticed something suspicious with Belle’s line (something I’m not even going to bother going in to). After talking with the doctor, they insisted we go back to the ER for an x-ray to check the line placement. We spent all of Sunday in the ER and were cleared to go home Sunday evening.
THE SILVER LINING
Since being home, we have had 4 really great, almost “normal” days. Of course she has to do something crazy each day just to keep us on our toes, but for the most part, this has been a great week. Belle’s liver is doing so much better and she has finally started to respond to the new medicine they gave her. It is not even FDA approved, but with Pittsburgh being in a clinical trial, we were able to start Belle at one month old which will, Lord willing, do wonders for her future. We were actually able to put Christmas decorations up, Joey went hunting and got a deer, and I even did a little Christmas shopping. I don’t understand how exactly, but dinner just seems to show up at my house each day, and many amazing friends and family have showed up to fill in the gaps until our nursing gets up and running.
If I were to write about my children tonight I might say…
Belle has many struggles, but she is incredibly strong and such a fighter. God saved her life so he must have something big in store for her. She’s pretty much a baby genius, having taught herself to nurse at day 35. She has beautiful long eyelashes and big blue eyes, and the sweetest little frownie face when she is mad. She has taught me more life lessons in 4 months than my previous 30 years. She is truly incredible.
Jonah is so full of fire and personality. He laughs at his own jokes and absolutely loves to entertain a room of people. He knows his ABC’s and counts to 10, and sings himself to sleep every single night. He has most of the Polar Express memorized and is loving everything about Christmas this year. He is the most loving big brother. He dotes over his sissy, won’t stop hugging and kissing her, and I know he will watch out for her for the rest of her life.
We are blessed. Merry Christmas from the Bispings <3