Congratulations to the New Mom with Chronic Illness

Rachel Nesmith Batman cataplexy custom tee shirts diabetes dream fibromyalgia hepatic adenoma high risk nap napcave narcolepsy narcolepsy awareness national napping day patient story pregnancy relax Rheumitoid Arthirtis sleep sleep paralysis sleep week sleepy sleepy american spoonie superheroes true story xyrem

**Click here to read this Article on So you have a brand new little blessing in your life! How exciting! You are also apprehensive if you can handle Motherhood living with a chronic illness. I was there, 18 months ago when my Savannah was born! I have several chronic illnesses: Narcolepsy with Cataplexy, Fibromyalgia, Rheumatoid Arthritis, Diabetes Type 2, and chronic Hepatic Adenomas. Each illness has shaped who I have become today... and I am phenomenal- and so are you! Motherhood is tough in and of itself! We, however, are Superheros!
The Special Moment
March 27, 2014 My family surrounded my hospital bedside just minutes from my second liver resection to remove a growing hepatic adenoma from my liver. Suddenly, my nurse exclaimed,”Is there any reason you could be pregnant?” My surgery was canceled, I was 5wks into a very high risk pregnancy. Finding an OBGYN willing to help me was challenging, but when I did it made all the difference! Every week I went to Dr. Jeff Livingston's office for monitoring my blood sugar, and consulting with Dr. Dhiresh Jeyarajah about my hepatic adenoma monthly. I had to stop/substitute several prescriptions, as well.
A Narcoleptic Pregnancy
I wondered if I could handle being a mom, unable to drive, having to take naps, control cataplexy, with a baby. Other people worry, too. People whom its none of their business to care about my abilities. Get all of your prescriptions listed and a folder for all pertinent documents, shot records, hospital admissions, and insurance cards in a clearly labeled expandable folder. Knowing where your papers are saves much time and stress. November 3rd, Savannah was born via cesarean section, at 37wks gestation. Due to both of my doctor's advice, I had a tubal ligation, as more pregnancies would prove even riskier. Perfect lil one spent 4 days in the NICU until she could wean off her glucose IV and control her insulin levels. My incision infected, and I was not discharged for several more days. I was so sad to be separated from my baby as she was discharged 3 days before I was, with her Dad. She did visit me several times, but I still missed her very much. I had it planned out in my head... the perfect Mom, Dad, Baby going home at the same time, but the unexpected happened... my diabetes and surgical site infection required further hospitalization. The most important thing to remember is to be patient and accepting that perfection is impossible, we will be inconvenienced, and in pain, but rest assured, our doctors typically only want what is best for your and baby's health.
1st Time I Held Newborn Savannah(NICU)
a person holding a baby
Taking Savannah home was wonderful and challenging. We had so much fun everyday together. She slept beside me in her monkey bed, and every two hours she awoke hungry, needing changing. The times I took medication 3 times a night weren't always the same times. Most times I instantly woke to her cries, other times my husband woke to tend her. You have to work as a team, so that you don't get burned out, even though  still today, I put my own needs last. When she is needing food, changes, cuddles, I usually eat last, sleep less, fight to find a break to take my many prescriptions in the morning, midday, and night. A nice hot shower is a huge luxury, because unless Savannah is asleep or with another adult, she screams and cries.   Sometimes I have been in sleep paralysis, and I could feel Savannah crawl over me, hear her coos, but I couldn't move. Other times out of sheer muscular pain and sleep deprivation I broke down and cried. It's all so worth the inconvenience, to be honored to love this little angel given to us.
I finally developed this amazing bond and a great daily routine, rhythm with Savannah. I waited several months to remove one of my hepatic adenomas which were growing. On March 6, 2015, when Savannah was 4 months old, I had my second liver resection. Liver Resections are the most intensely difficult surgeries to recover.  I remember embracing Kerry and Savannah before being taken to the Operating Room. I woke in lots of pain in the surgical ICU. Savannah came to see me several times,  living with my parents most that week. I feared she would forget me, and I emotionally needed her in my most excruciating moments in ICU. My heart broke saying goodbye each time. ICU is my least favorite place in any hospital...It took the hospital 4 whole days to get my narcolepsy and cataplexy medications approved and administered accurately. When it comes to my narcolepsy, two days without Xyrem and Effexor my cataplexy, sleep paralysis, and hypnagogic hallucinations consumed 80% of my entire 24hr day. Consumed, tortured with conscious paralysis with very realistic nightmares. I was terrifyingly confused about which sounds and images were real vs a nightmare. My parents had to fight to get it straightened out with the hospital. I could not wait to get home. My advice is to list all your doctors,their specialties, your medications and their amounts, surgeries, and health conditions together on a word file, and carry several copies at any given time to give to healthcare personnel.
 Last Embrace before 2nd Liver Resection
a person holding a baby
When I returned home and to being Savannah's primary caregiver, I was very sore, and almost started from scratch building back to where we were before the surgery. I would feed Savannah in her stroller/carseat, limited picking her up. Slowly, my strength returned as we watched Savannah grow, smile, jump in her jumper. Getting back on all my before pregnancy prescriptions made my confidence in safely caring for Savannah. I have an excellent support system: Kerry, his Mom and sister, My Mom and my Dad are almost always available to help Savannah and I get what we need, where we need. Social Services were concerned before my surgery that I may be unfit to be Savannah's care taker. After recovering from my liver resection, the case was determined unfounded. It really bothers me that the state can try to take your kids just because someone whom does not understand your disability and health issues charges that you are too sick to be the primary caregiver.
a group of people sitting in a chair
Savannah and her parents at 6mo.
By this time, I knew I'm a great Mom! I risked my ve
ry life by carrying her to term! Above and beyond most! The chronic pain, Narcolepsy's sleepiness and paralysis episodes, I deal with daily, but still shine! What regular person can truly understand chronic pain, extreme narcolepsy? How we deal? Not many, however, this doesn't stop them from making their marginalizing opinions from being know... Try to ignore all negativity. I have the authority to be heard as a disabled Mom, and you are nothing short of Amazing!
To the Hospital Social Worker whom tried to take my child... my child is thriving. To strangers or even family whom think I couldn't succeed at motherhood, too bad, so sad... I shine brilliantly at Motherhood doing the very best I can, with what I have, with the empathetic understanding worthy of a Gold Medalist.
a small child sitting on a table
Savannah and I when she was 9mo.
New motherhood was very challenging, still takes a lot of my energy, but is the most rewarding role I play in life. It is shocking to me how much energy and effort being a hand's on Mom whom is always starving for sleep and in pain we spend to get our job as mom done well.  Our empathic abilities makes us excellent humans as well as parents, as our human connectedness goes above average confines.  It is still a shock that such a beautifully healthy energetic child was grown inside my weak, broken body. I am amazed how I was able to form a brilliant piece of sunshine the world would have never seen if I never bravely faced the negative doubters and wake each day I am Savannah's Mom living each day as proof they are wrong!
a little girl sitting in front of a curtain
Valentine's 2016
Now Savannah is 18months, getting into everything her hands can get into and make messes. I definitely get more exercise chasing Savannah! She loves to pick up hair clips, the computer mouse, highlighters, brushes, straws, etc. and carry them to you, offering them wanting you to accept as a gift. She is exceptionally sweet, curious, accepting, healthy, and loving. She fills my heart with love. My recommendations for new moms and new moms-to-be? Listen to yourself... your body, your strength, your beliefs. Stay positive and ignore negativity, especially ignore ignorant negativity. Rest often! Don't feel bad if you can't stop all your medications while pregnant nor breast feed if you must take your medications to be the best Mommy possible! Any accommodations or adaptations you need to make or take, do so without reservation. Love is the most vital thing your child needs to be healthy, more than food and shelter. Newborns are easier to keep safe, as toddlers are all over the place and mobile! Keep a quiet home, limit visitors the first few months, but don't hesitate to request help when you need it!
Take care of yourself, and share parental duties with your partner/spouse. Most of all, know you are never alone, us chronically ill Moms have what it takes to raise amazing people whom will bring brilliantly caring hearts to our world.
Congratulations! Happy First Mother's Day!
a person holding a baby

Older Post Newer Post

Leave a comment

Please note, comments must be approved before they are published