What is normal?
I have started this post numerous times in my head, trying to find a way to explain what life has been like the past year and half without sounding like I’m feeling sorry for myself or like parenting is a burden. Because, believe me, I couldn’t feel more opposite of both of those statements.
However, when you parent a child with special needs, the new normal that you settle into after having a baby never really comes. Spending the first five months of Faith’s life tethered to IVs and wires and tubes, while being confined to the very limiting space of a sterile hospital bedroom, isn’t really fitting of the soft, squishy newborn phase experienced after the birth of a healthy baby. That’s not to say that parenting a healthy baby doesn’t come with it’s own set of challenges, but more than likely you’re not confronted with mortality or medical interventions that may affect your child’s quality of life and, therefore, your life and the life of your family on a daily basis.
Nor do you find that normal once you’re home and still tethered to IVs and tubes. Of course, it becomes very rote to flick the bubbles from an IV line or reset a feeding pump every four hours or set your sterile field before you access your child’s central line or wait for a delivery of medical supplies to your front door, but never normal. There is always the sense of, Am I really doing this right now?
Those five months in the hospital were hard. We were mentally, physically, and emotionally exhausted. I think I’ve said it before, but I have no idea how bills were paid or how our pantry stayed stocked or how our minds didn’t implode from the stress. I know that our great God sustained us when we truly thought we wouldn’t make it another day. We also had incredible support from family and friends who helped us out with Becks, brought meals, cleaned our home, did loads of laundry, and sent gas cards and gift cards. They went above and beyond the call of duty, and we are eternally grateful for months of support and love from them.
A Lot of Medical Talk…
I don’t think I’ve ever formally shared Faith’s diagnosis, but outside of being born faaaaaar too early and the host of complications that come with prematurity, she also developed Necrotizing Enterocolitis (NEC) when she was three weeks old, which is fancy talk for the death of her intestines. In Faith’s case, her bowel then perforated causing the bacteria in her gut to leak into her bloodstream making her severely ill VERY fast. She transferred from the hospital where she was born to Cincinnati Children’s Hospital so that she could have emergency surgery. It was during that surgery where they resected a large portion of her small intestine that had died. Two subsequent surgeries required more resection, and left her with less than half of her small intestine and 90% of her colon. Thus, she has Short Bowel or “Short Gut” Syndrome. Because of this, she is susceptible to malabsorption, malnutrition, and dehydration. Her body’s inability to absorb nutrients the way someone with normal bowel function does is why she came home on TPN (total parenteral nutrition) and lipids (fats) and a feeding tube. In the beginning, these three things worked together to provide her the appropriate composition of fluids and nutrition. As she grew, she needed less and less support from her IV nutrition, which is why she is now central-line free and able to thrive on only her feeding tube and what she takes by mouth each day.
Faith is followed very closely by a team of physicians, nurses, and therapists who ensure that she’s healthy and growing. Outside of our visits to one of the best Gastro-Intestinal (GI) teams in the nation, she has received Occupational Therapy, Physical Therapy, and Speech Therapy.
In a sense, I have traded my teaching degree for that of a nurse. And, it’s all pretty overwhelming sometimes. Frustrating, too, because I don’t always know all the answers and have to rely on my intuition and frequent phone calls to my GI nurse. I’m a well-known control freak, and the fact that I have little control over Faith’s circumstance makes me crazy sometimes!
If you follow me on Instagram, you know that we have been in the hospital with Faith since Sunday. She’s not been her usual self for sometime, and last week was apparently her tipping point. Two trips to the ER, a visit to her pediatrician and Urgent Care finally landed her an admission. Her sodium levels were scary high and she was extremely dehydrated. She cried all day on Sunday, likely because she had a massive headache as a result of this. You feel so helpless when you have a kiddo with medical needs who cannot communicate how terribly she feels. They started her on IV fluids upon admission which helped to correct her sodium levels temporarily, but they’ve been on the rise on and off all week long. Because of this, we cannot be safely discharged home. Further, Faith doesn’t have a line anymore so we’re unable to run IV fluids at home anymore (nor do we want to!). Thus, it’s trial and error, trying to find the correct solution.
Very quickly we were reminded what a blessing it is to have your family home under one roof. It’s not easy on life in general to have your family separated between home and the hospital. On one hand, I want to spend as much time as possible with Faith, who’s completely out of her element in strange place getting pricked and poked every four hours and not feeling her normal self. And, then, there’s Becks, who’s endured such dramatic life changes in the past year and half. I’m so grateful that kids are so resilient because it’s not been easy on him either. B and I both agree that keeping things as normal as possible during Faith’s admissions is important, so one of us has made sure to get him off to school and be here when he gets off the bus each day. Still, it’s not the same to wake up to only one parent and be short your favorite sister.
And, I miss my husband. While we spend as much time together as possible at the hospital, we don’t get to wake up next to each other or decompress about our days as we normally would. B and I would both agree that this past year and a half has tried our marriage in ways we never thought possible. Marriage in general is far from easy, but the stress of the past year has really stretched us and worn us thin on many occasions.
The Good News…
Faith’s hospital stay will be short-lived. She is not critically or terminally ill, and we are so grateful for that. We will get to go home and resume life as normal as normal can be, as soon as the team figures out how to regulate her sodium. In the meantime, we’ll rock-paper-scissors over who has to stay on the uncomfortable pull-out chair overnight, take Faith on long stroller rides back and forth across the concourse of the hospital when the confines of her hospital room become too much, and pray that we’ll all be home together soon.
Thank you for your kind words of support and love! We appreciate all the prayers we can get!