None of the older children were stirring yet so I took a few moments to collect my thoughts on what we needed to do for our baby who appeared to be suffering from a stomach virus. I had called the doctor yesterday and had been instructed to call back today if he wasn’t improving. I knew with certainty that he was not improving but couldn’t place my finger on why. After two phone calls and more monitoring we decided to have him evaluated. As I left the house I had no idea that it would be for the last time without the uninvited stranger.
We didn’t stay long at the doctor’s office. A quick CO2 test on his finger showed that he needed to go to the ER immediately. I called my husband and told him what was going on and that we would likely be there for a short stay… maybe some fluids… and be home.
The Emergency Room was swirling with doctors, nurses, blood work and many questions as to what was going on. Our baby… our fourth child… the one named for my husband… was looking more and more lethargic and unresponsive. I could tell from the conversation of the staff that this was much more serious that a stomach bug and I made the call to have my husband join me at the ER.
Things slowed down a bit as we waited for tests to be ran. I prayed silently as I held our limp baby who was finally getting relief from his upset stomach, thanks to some medications. My prayer was simple and perfect. I prayed for Him to carry us and to be able to find out what was wrong with our baby who was showing signs of labored breathing.
The answer to my prayer came shortly after it was offered up. A seasoned medic from the ambulance crew happened to be walking through the hospital and stuck his head in to see what was going on with “the little guy.” He asked if a glucose reading had been done and sure enough, it had not. They got out the lancet and glucometer and as my husband entered the room we heard the reading, “588,” followed by, “your son has Type 1 Diabetes.”
Very quickly the room got busy again and we were aware that we were being transferred to Children’s Mercy Hospital via their own jet. I called our priest and asked him to come pray with us and I made a quick run home to gather a bag of clothes and for my breast pump as I was already becoming engorged from not being able to feed. As we all gathered in the hospital room to pray before our jet departure the emotions became real. The fear of not knowing what was in store was washed over with prayer and I knew that God was in control and that He would indeed carry us as I had prayed.
The flight crew loaded our lethargic baby onto the stretcher and I lurked behind. He was now becoming very agitated at the sight of me and wanting to nurse for comfort. As the jet was taking off my mind began to wonder what we would find when we landed at the hospital and how they would respond to the fact that he was still exclusively breastfeeding at 11 months old. Prayers continued for strength, wisdom, and peace.
In the ICU our problems seemed minor compared to what others were facing. The halls were depressing with some very very sick children there whom many were not likely to be leaving anytime soon. Of course I could not nurse. I found a corner of the room behind the medical crib where I could ‘hide’ from my infant’s sight. I stayed there exclusively as to not cause any distress and spent my time on my smartphone researching Type 1 Diabetes in babies. Thankfully a Facebook friend knew someone who referred me to someone else who had recently had their baby diagnosed at almost exactly the same age. I took this new contact as a lifeline and started asking as many questions as I could, beginning with “what are we going to do about nursing once we get out of ICU?”
Two days passed and we were transferred to the 5th floor where the Diabetes educators were going to train us on how to care for our child over the next several days. Several doctors came in and evaluated our son and the situation. Most were very surprised that I was still exclusively nursing and slightly baffled at why I would want to continue to nurse when we were really only two weeks away from his first birthday. But there was one doctor who came through and was ready to tackle the extra obstacle of us continuing to nurse through Diabetes. I was soon holding our son and nursing him for nutrition and comfort once again. Thank you Jesus.
The staff told us having Type 1 Diabetes was like having a newborn all over again. They were right. We had to learn everything from scratch. There was a process to everything. Weigh the baby in a dry diaper before the feeding, weigh the diaper after the feeding, all in order to try to monitor and decide how much insulin to administer him for a nursing session. No longer were we free to just have a comfort nursing session without a shot.
It might have been easier at the time to quit nursing. Actually I’m quite sure it would have been easier from the logistics side of things. But I knew that our baby still needed my milk more than ever. Not only for nutrition and comfort, but also for the other health benefits that breastmilk provides.
By late Friday we were headed home and very nervous about this immense responsibility that was left up to us. A 24/7/365 job that never gives a break and has life threatening consequences. Type 1 Diabetes, the uninvited stranger, had made it’s full introduction.
The next 30 days that followed our arrival home were as if we were living a nightmare. Alarms were set for three hour increments around the clock and more often than not I was only getting 45 minutes of sleep in-between rounds of blood sugar testing, calling the doctor, dosing, and feeding routine. I prayed for His Mercy in such a helpless passionate way because in my despair I had reached the point where I didn’t even have the words to pray anymore from my heart. I clearly remember sitting in our rocking chair nursing our little one and reading all my prayers from a prayer book as I offered up my sorrows.
Life has gotten easier. Type 1 Diabetes has been a language we have gotten a fairly good hold on. We continue to nurse at 21 months and our beautiful baby is looking (and acting!) more like a toddler everyday. Nursing through Type 1 Diabetes has been such a blessing. We are able to nurse through night lows and he never wakes or knows about them. I would encourage everyone facing an infant diagnosis of Type 1 Diabetes to continue nursing as long as possible if only for this reason!
If you, or someone you know, are facing an infant Type 1 Diabetes Diagnosis please feel free to contact me directly. I would love to be that lifeline contact that helped me through the first 30 days for someone else in need! My Facebook is: Janalin Hood or email me at hello (at) janalinhood (dot) com
"If God sends you many sufferings, it is a sign that He has great plans for you and certainly wants to make you a saint." - St. Ignatius of Loyola
Breastfeeding the Type 1 Diabetic Child