How one miracle started our family on a new path.
When Dottie was born we were delighted! She was our first child, healthy and full of life, wide-eyed and looking the world over. We sent pictures to our families and made it “Facebook Official.” Dottie is a New Years Eve baby, born December 31st at 8:24 pm. She weighed 8lbs 5oz and was a mere 10 days past her due date. All was well… until it wasn’t. (Scroll down for the rest of our story)
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Dottie was taken to the Neonatal Intensive Care Unit because there were concerns about how she was doing. She was not maintaining a warm enough body temperature, she was spitting up, she was not pooping or eating, and her skin color was off a bit - she just wasn’t looking as healthy as she should. They began taking pictures and running tests, but were not sure what the trouble was. They couldn’t figure out what they were seeing in her abdomen and as time went on her condition worsened. Thankfully we have an incredible children’s hospital less than an hour away which is fully connected with our local hospital. Pictures and test results were sent to the children's hospital and the surgeon on call that night immediately knew what the problem was. She began preparing on her end while things went into full swing on our end. Emergency transport was called, additional ultrasound pictures were taken, final test results were entered, and supplies for the trip were gathered.
I kissed Dottie goodbye before they loaded her up in the special box that would help save her life. I watched them wheel her out and was left sitting alone, not knowing if I would see her alive again.
At 24 hours old Dottie was in surgery. Our perfectly healthy little girl was anything but healthy. We all sat crying together as we waited.
When the surgeon came in she sat down in front of us. She took a paper from a colleague and began sketching Dottie’s intestines. Explaining to us as she drew that Dottie’s stomach was good and she had 4 cm of healthy jejunum (the part immediately after the stomach) and that 10 cm of jejunum had already been removed. After the small intestine her colon was also healthy. However, it appeared as though all her small bowel was necrotic. Although the surgeon did not hold out much hope she wanted to give 24 hours, now that the small bowel had been untwisted, to see if there was any life left in some part of it.
As she spoke, a grim picture of our daughters future was painted. The small bowel is the part of the intestinal system that absorbs the nutrition from food that our bodies need to thrive, grow, and be healthy. With nearly no small bowel left, if she were to survive Dottie would not have the ability to use food the way most of us do. She would need to be given intravenous nutrition, which would be very hard on her body. She would also have a gastrostomy tube (G-tube) placed in her stomach. The IV nutrition would need to use a major vein and there are a limited number of appropriate veins in the body. These “access points” can become infected, collapse, and are sometime not usable again. If she were to run out of access points she would have no other way to get the nutrition she needs. She would be in and out of the hospital with infections, needing surgeries, being sick and often in pain. Dottie would undoubtedly need a liver transplant and likely an intestinal transplant. Both are risky procedures. Our lives would be wholly changed because of her needs. We would be all consumed with food and medical challenges.
At this time the doctor told us we would have to make a decision. In 24 hours, when all Dottie’s small bowel would almost certainly be dead, they could sew her up and we could hold our little girl and say goodbye to her, being with her for whatever moments she would have. Alternatively, the surgeon could remove the dead parts of bowel and try to give her life - a life full of dangerous procedures, medical complications, sickness, and pain.
And she left.
When it was time for her next surgery Seth and I were able to walk along with Dottie this time. We were holding out hope and prayers that there would be life in her intestine. The surgeons (the first one and a new one) came out with the news that everything was dead except a few centimeters at the other end of her intestine. If we chose to, they could cut out what was dead and attempt to sew together the two small healthy ends.
We chose to have the surgeons save her life if they could.
A week later Dottie’s stomach was swelling and she had to go back into surgery. There was some leaking and the doctor put in a drainage system to keep the fluid out of her stomach while the intestine healed together. As time passed the drainage fluid became less and less. It appeared as though the two ends were healing together and functioning properly.
We spent every day with Dottie. We would take a taxi or tram ride to the hospital and wind our way through the halls and elevators to sit by her side. We took turns holding her whenever possible, reading her books, singing to her, and Seth even played the guitar (a favorite for our nurses). We would take turns to eat or visit with family and friends who came by.
Some of the simplest things became huge moments for us; her first pair of socks, first bow, and wearing clothes for the first time. I realized how we so often take these things for granted because they are just part of life. We celebrated these steps as well as so many medical steps. As time passed Dottie made great strides in her recovery and we gained more and more hope that she would recover.
One of our best moments earlier on was when we met with the GI specialist from the children’s hospital. At this meeting we learned that the hope for Dottie would be to have a wonderful, healthy life on IV nutrition (TPN). We learned that people can spend years on TPN and be very healthy, leading full and wonderful lives. Her goal as Dottie’s doctor would be to see her grow and thrive on TPN with no liver problems and no intestinal transplant.
Here we are now, 18 months later. Dottie looks great, she is healthy and happy. We have learned so many things about her medical conditions and how to live life. Setting up this website is our way to share our experiences, our struggles, and what we’ve learned. Our hope is to be helpful to others who find themselves in a similar situation- raising a child on full or partial home parenteral and enteral nutrition (HPEN).