J was 6 months old, exclusively breastfed, hitting every milestone, as she should; she was a picture of health and happiness. That night, nursing before bed was a bit off; nothing alarming, just a subtle discrepancy only a mother's intuition could detect. Kisses and snuggles and prayers and goodnights, as usual. Our lives were blissfully normal.
Morning: Nursing was, again, slightly different, but no fever or fussiness or reason to start a list of symptoms. As a mom who has had 3 babies, I chalked this up to just "one of those things that work themselves out".
Afternoon: I expect her to be hungry and ready to nurse after a nap, but there was a continued loss of appetite. Nursing was frustrating to her and she would push me away. Questions lingered, "Where is the fever, the rash, the running nose, the something?" I tried to ignore the first faint sensation of my stomach in free fall.
Bedtime: Choking and coughing during nursing. I thought to myself, "Why are your suck and swallow so uncoordinated?" I told C, if in the morning she doesn't wake up starving we are going to the pediatrician's office first thing.
J normally slept until 7 am, but I couldn't wait, I had to see if she would nurse. I woke her up, she seemed oddly weak but alert and happy to see me. I attributed the weakness to not having a full feeding in 24 hours and likely becoming dehydrated. I tried to nurse her, but she could not latch or swallow and she was too weak to push me away. Any milk that got into her mouth choked her. I told myself panicking will not help anyone right now, just get to the doctor as soon as possible. My stomach is now in full free fall and adrenaline has kicked in.
C and I are waiting with J outside the doctor's office when the nurses unlock the door, we were told his schedule was a bit different and he would be in at 9 am; we were welcome to wait in the waiting room. We didn't want to wait, but we wanted to see a familiar face, so we sat down. The nurses asked what was wrong, I told them I thought she had become dehydrated, she didn't want to nurse, but there were no other symptoms. We took J out of her car seat and she began to cry, which was raspy and weak. The nurses noticed her cry and full body weakness and told us to go to the pediatric emergency room immediately. Now, the free fall sensation gave way to nausea and it felt like there was a hand firmly wrapped around my throat. There was something wrong with my baby.
In the ER, J's weakness was rapidly and visibly progressing. IV fluids were started, dozens and dozens of questions were asked; a specific timeline was constructed. Then began the onslaught of testing: catheter to check for a UTI which was normal, blood draw to check for elevated white blood cells, also normal, lumbar puncture to check for meningitis, normal too, cranial CT scan to check for bleeding in her brain, also normal. They deep suctioned her airway to clear accumulating mucus and she barely reacted. My baby had just been pricked and poked and prodded from every angle and nothing showed up, nobody could tell us what was wrong. They told us she was being admitted to the pediatric intensive care unit, immediately, but they didn't know for what.
There are no feelings to describe the horror that penetrates to the furthest recesses of your mind when there is something wrong with your child and the people who live their lives figuring out these problems cannot tell you what is wrong. I remember praying for it to be meningitis, just so we would have an answer and could start treatment. That's how awful not having an answer is. You actually pray for your baby to have meningitis, because you know beyond the standard things doctors check for instantly drops you at the doorstep of every parent's living hell.
Once in the PICU, it took only a couple of hours for the doctors to reach a consensus: Infantile Botulism. That triggered a connection my brain had made years ago in a microbiology class and the only two things I could recall were: bacterial and opposite of tetanus, a nasty disease, which meant botulism was a nasty disease. The nausea was unbearable and the gripping sensation around my throat was thick and heavy. I simply cannot go into every detail, it is too much and my aim is not to educate you on botulism. The nutshell is that it was a horrific experience that we walked away from with our baby and unfathomable gratitude. J spent a total of 14 days in the hospital, 8 days in the PICU and 6 days in extended care. She lost all ability to clear her airway and could not move her body; she was paralyzed and on life support for 4 days. The 7mls of medicine that saved her life cost $50,000 and had to be flown overnight from North Carolina. She came home with the physical strength of a newborn baby and with a feeding tube down her nose. The reality is that without modern medicine and the brilliant people who have dedicated their lives to know how to execute it, my baby would have died. That truth will both haunt and humble me every day for the rest of my life. Praise God from whom all blessings flow, today, J is as normal and healthy as any child could be and botulism is just a piece of her medical history, not the end of her story.
This brings me to the point where I can introduce you to Ashley. Ashley was J's PICU nurse for 5 consecutive days out of her 8 spent there, so it is no wonder Ashley feels like J's nurse. And, though we had a multitude of astounding doctors and nurses who we loved during our 14 days there, that's how I will always remember Ashley, J's nurse. And, I say that with the highest honor. Ashley not only gave the best bed baths, propped J's limp and connected-to-100-different-machines little body the most comfortably, had the best attention to detail in every instance, and spent her own money on an outfit for J to wear on Extubation Day, she also genuinely and simply cared about J. She asked questions about J, wanted to see pictures and hear stories about her. She took time to get to know C and me and our other girls; I don't think she ever left our room without asking if C or I needed a meal or a drink of water. You know how some people just innately have a gift, things come naturally and easily to them, using their talents is effortless and seamless? That is what watching Ashley care for J was like. She didn't have to think, she wasn't mechanically working through a checklist, she didn't have any nervousness or tension pulsing through her; she just simply cared for J and met her needs. It was like watching a potter at the wheel, calming, graceful and 100% in control. It is a beautiful thing to witness someone living in their calling and that is what I got to see in Ashley.
Looking back, the most meaningful thing Ashley did for C and I was letting us hold J while she was intubated. She told us many nurses wouldn't let this happen, but she felt comfortable enough to allow it. I cannot tell you how much holding J meant to me. This was my baby, who every single day of her life I had held and nursed and hugged and kissed and squeezed, and because of tubing and taping and machines, I had not been able to hold in over 24 hours. That might not seem like a big deal, but when the carpet of your life has been instantly ripped out from under your feet and your pieces of normalcy lay scattered and abandoned around you, holding your child is like wrapping a weighted blanket around yourself and feeling gravity return to your world. Being able to hold J, under those circumstances, was a gift I will never forget.
I told Ashley when we were leaving that this experience felt to me like everything she had ever done in her life, all her education, all her ups and downs in nursing, every decision that brought her to the crossroads of meeting J was just training and preparation to be her nurse. Everything prior to J had been one enormous role-playing scenario so she would be ready when J rolled through those PICU doors. That is how crucial and important I viewed her role in J's care. I know that isn't Ashley's reality, nursing is who she is, it is what she does, it is her gift and it is an extension of herself. She has been a nurse to hundreds and hundreds of patients and she has met their needs same as she did J's, but to me, my reality is that she will always be and was made to be J's nurse.