I was three years old when my sister was born. I don’t have many memories of myself at that age, but I do know that I was excited that there was going to be a baby. I could not wait to be a “Little Mommy” to a real, pinky, squishy infant. To help me feel part of the process, my parents bought me a baby doll, whom I named Sarah. I can still smell the powder-fresh, newborn-scented plastic. That doll went everywhere with me for years. I changed her, bathed her, and dressed her, just like my mom did with my baby sister. I even sat in my chair, delicately lifted my Little Mermaid t-shirt, and nursed my Sarah doll.
There was nothing unnatural or strange about it to me. My mom breastfed me and I watched her do the same with my sister. I never considered feeding my babies any other way. And when I became pregnant with my first child in 2011, I spent hours wondering what it would feel like to hold a suckling infant at my own breast. I agonized at the thought that I might not be able to nurse; it seemed like everyone had their own opinions and reasons for being unable to breastfeed and none of them were shy in expressing that to me. What if I didn’t have enough supply? What if something went wrong? What if it just didn’t work out? I read and studied so many books, and despite support and encouragement from both my husband and mom, I shook inside at my son’s first visit to the pediatrician. I was terrified I would be told he wasn’t gaining weight, terrified to be instructed to supplement with formula. I breathed a sigh of relief when the doctor said he was growing beautifully. It wasn’t until half-way through my son’s first year that I stopped worrying about hearing those words. We did it! Together we had established a healthy and strong nursing relationship! So strong, in fact, that he still asks for “nanos” at nearly three years old. We have well surpassed my breastfeeding goals and I couldn’t be happier!
Nursing my baby boy then and now.
When I became pregnant with my second child, a girl, the fears and anxiety surrounding breastfeeding were all but a distant and faint memory. I never actually stopped making milk, so I knew there would be plenty to go around once the baby came. And there was! I was now tandem nursing my two-year-old and newborn. Another healthy nursling was added to the mix, and it was a beautiful thing.
Siblings bond over tandem nursing
Then one day, the thing that I both took for granted and treasured with all my heart was threatened. It was early June of 2014 and my nine-month-old daughter became ill. We thought she caught a stomach bug that was going around, so we monitored her closely for the rest of the weekend. She was acting strange, and we contemplated taking her to an urgent care. We decided that since there was no fever and she was still nursing and voiding often, we would wait to take her to the pediatrician first thing Monday morning.
The day before Baby Girl’s diagnosis. She just wasn’t herself.
When the office opened, I called to make the appointment and started getting ready. She had been so fussy and just wanted to be held. I stepped away from her crib to quickly change. When I came back, I knew in my heart that something was horribly wrong. Her rosy, pink cheeks were sunken deep and her bright eyes were dark and unresponsive. Then, I noticed her breaths were deep and labored, exposing her delicate skeletal frame beneath her sleeper. At this point, I was terrified to put her in the car for fear that she would fall asleep and never wake up.
Just before calling the ambulance, the picture I text my husband while he was at work
Waiting for the ambulance to arrive was the longest 8 minutes of my life. As I tried to keep my little girl’s limp body conscious, I flipped into survival mode. I felt as numb and lifeless as she looked and there was nothing I could do except keep calling her name to keep her awake. When the volunteer paramedics arrived they gave her blow-by oxygen and they assured me that her heart rate and pulse were all normal. I breathed a sigh of relief. They instructed me to continue to keep her awake as we climbed in the ambulance. I took comfort in knowing we would be traveling without sirens. My husband rushed home from work and made it in time to follow us to the children’s hospital in Akron.
At the emergency room, it took under five minutes for our baby girl to be given a diagnosis of the auto-immune disease, type-one diabetes. I agonized as I quickly asked the attending ER doctor if it was our fault, but I knew that it wasn’t. My daughter was still basically exclusively breastfed, as she really wasn’t interested in solids yet and there is no known cause to this chronic medical condition. Once she had a central line put in and IV fluids were started, I asked when I could nurse her. I didn’t get a straight answer and I felt paralyzed with fear as I flashed back to our last nursing session. It was hurried. I was trying to get her to breastfeed before we left for the doctor’s office, but she really wasn’t interested. She was so unaware of her surroundings at the time and I remember being concerned. It was at that point that I thought, “What if that was the last time I will ever nurse her again?” I knew that diabetes required careful attention to what was consumed. What if they made me switch to formula so we could accurately count the carbs my daughter would consume? What if I had to become an exclusive pumper so they could track how many ounces she drank? I tried to push the thought out of my head. We had only just arrived at the hospital and they were transferring us to the pediatric intensive care unit. I would find out there. I settled on asking for a pump. I was so engorged from our shortened earlier nursing and I made up my mind to have milk ready for her when the time came. I had to keep stimulating to make sure I had milk when she was ready for it.
It wasn’t until we got to the PICU that I realized just how serious things were and how close we were to losing our little girl. It was surreal listening to the attending physician ask questions of the medical students and discuss her treatment. For the first time that day, I was truly scared that she might not make it. She was in diabetic ketoacidosis and her blood sugar was in the 600’s. Her electrolytes were all out of whack and she was lethargic and mostly unresponsive. I also quickly learned that once her levels were stabilized, managing her new medical condition would be much more difficult than I had originally anticipated. I emphatically told our nurse that our daughter was exclusively breastfed. She told me that for now, she was getting what she needed through her IV. I asked if and when I would ever be able to nurse again. My heart sank when she said she didn’t know, but that she would find out. I prepared myself for the worst and began to mourn the loss of nursing my baby girl. I felt a twinge of guilt for feeling so defeated. She was alive, after all, but one of the most important parts of our current relationship was being threatened and was on the verge of extinction. I was devastated.
I honestly can’t remember how long it took to get an answer, but it felt like forever. In the meantime, I conducted my own research. Google was futile. It was as if there were no records of nursing a child with type one. I finally stumbled upon a Facebook group for parents of type one children. They directed me to the group Diapers and Diabetes, where many other moms continued to breastfeed their type one’s after diagnosis. Approval to join the group took a day or two, so I couldn’t ask any questions yet, but just knowing there were others brought peace to my soul. The nurse finally found out that once our daughter was stable and connected to her insulin pump, I could put her to my breast. Until then, I could give her a bottle of pumped milk and report how many ounces she drank. It was an emotional moment when I gave her her first bottle of milk. She basically inhaled three bottles worth. My heart was happy and I knew hers was, too. The next day, Baby Girl was acting much more like herself and she knew that the bottle wasn’t her mommy – she refused to drink it! We were scheduled to get her on her insulin pump in a few hours and both of us couldn’t wait. The breast pump was no longer effective in producing much milk and I wanted to be sure I wouldn’t lose my supply. Our nurse and pump educator were wonderful and worked together to get Little Miss nursing as quickly as possible. Finally, after over 24 hours, my baby nursed from my breast again. Just the day before, I thought I would never be able to experience this moment with my daughter again. The ecstasy of that moment was indescribable.
First bottle of pumped breast milk.
First latch after receiving her insulin pump. I don’t know who was happier!
Happy baby…Happy, Exhausted parents showing off Baby Girl’s new pump.
Feeling much better after nursing.
There’s the smile we had been missing!
Packing up to head home!
So, this world breastfeeding week, I celebrated that I can still nurse my daughter in the manner in which we first started. I celebrated that despite this horrible disease, I can still nourish her in the way we choose. I celebrated that despite our lives being turned upside down, my daughter and I can still bond at my breast. I celebrated that I can give her an extra line of defense against illness, especially since she is now more susceptible to difficulties that accompany a simple cold or flu. I celebrated because every time I give her insulin for the breast milk she is consuming, I am reminded of how close we were to losing this part of our relationship. And I continue to celebrate, because no nursing mother of a child with type one diabetes should have to give that up…no matter what.
**Signs and Symptoms of Type 1 Diabetes include excessive thirst, excessive urination, weight loss, and extreme hunger. If breath smells fruity, there is vomiting, and/or deep, rapid breathing, head to emergency immediately! With our daughter, I mistakenly thought the leaks in her cloth diapers were because I was washing them incorrectly or putting them on her the wrong way. In hindsight, she was wetting through them quickly because of her high blood sugars! The first sign we saw was the vomiting, which we attributed to a stomach bug that had been going around. It is so difficult to diagnose babies with Type 1. You know your child best. If he or she is “just not acting him/herself”, seek medical attention. We have set up a non-profit to raise awareness for Type 1. Check out http://www.facebook.com/jamforjoyt1d. For more information about Type 1 Diabetes, visit http://www.jdrf.org.**