Our 24 hours were up and we made it to the lab and had the necessary torture of a blood draw performed by pricking the tiny heel of our now very yellow son. Still ignoring the knot in my stomach, we returned home and I continued to try and entice my son to nurse. His big sisters were disturbed by my waking the little fellow and making him cry with cold face clothes and sprinkles of water on his face. I too hated it, but did it repeatedly in hopes he might actually nurse for more than a minute or too before drifting back to sleep.
Friday, shortly after noon, the phone rang. It was our pediatrician’s nurse who informed us that our test results were in and we were needed in the doctor’s office immediately. With the knot that had been ever present tightening even more in the pit of my stomach, we quickly loaded the children into their car seats and, without delay, headed downtown to the office.
Dr. Simo met us with a very serious face and ushered us into his office. The grave expression on his face froze the knot in my stomach. He quietly explained that in the 24 hours plus since Jonathan’s release his bilirubin levels had increased to dangerous levels.
“I made a big mistake in listening to a mother’s heart, and not my head, by letting you take Jonathan home before his levels went down. My mistake might have cost you your son. The neonatal staff is waiting for you at CHEO. You must go directly there and Jonathan will be admitted and a double blood exchange will be done in hopes of saving him from permanent brain damage. We can only pray that we are not too late.”
Hugo’s eyes caught mine. The guilt I felt was immense and the doctor’s following words cut even deeper. “You must not nurse him any more. It appears you have ABO incompatibility and as a result have built up antibodies during your pregnancy and these are attacking your son’s blood still.”
“What?” I gasped. “Do you mean I can never nurse him again?” My husband stared at me incredulously; unable to believe I was questioning this when our son was so ill. Dr Simo replied, “It is too early to know, but for now the Doctors at CHEO have recommended that you not nurse him any more. In 24, 48 hours this decision will be revisited.”
Stunned I gathered my son up and stared at him – was my own milk actually harming him? My husband asked if we might use the phone to call a co-worker so as to arrange to leave our daughters with him and his wife.
“Actually you do not have time to do that. They are waiting as we speak for Jonathan. Every minute is essential. You must go directly to CHEO with the baby. I’m so sorry. I feel I have failed you.”
Wordlessly we directed the girls back out to the car. Sensing the stress, sadness and tension, the girls were remarkably quiet. Even 18 month old Jenny was silent in her hated car seat. I strapped tiny Jonathan into his car seat, barely able to keep the tears back. My mind was whirling. Not only had I begged to have him home as soon as his billi was stable, perhaps my persistent efforts to nurse him had actually been harming him. When I shared my fears and guilt with Hugo, he was too worried to be able to discuss it. Ultimately we just continued the half hour drive, in what was now rush hour, to CHEO in silence, each lost with our personal worries and feelings of guilt and both anxious to make it to the hospital.
When we finally made it there we were whisked up to the NeoNatal Unit where the double doors loomed ominously before this tiny family of three that suddenly felt so fragile. I held Jonathan while Hugo clasped each our daughters little hands in his. We were all quiet.
The nurses on duty were huddled together watching for our arrival. One of htem came forward and greeted us and took Jonathan from my arms. My eyes filled with tears as Aimee suddenly cried out "Hey - why are they taking my baby!??" Not 'our baby' but my baby. She so clearly felt very protective of her baby brother. Another nurse stepped forward and knelt down to her three year old height. "It's okay honey." She reassured her. Your baby is sick and we are going to make him all better. She took Aimee's hand and brought her to the window of the room they had taken Jonathan to and lifted her up to see. A nurse was undressing him and doing the perfunctary examination, heart rate, pulse while another was preping him for an IV. He was too weak to protest.
She put Aimee back down and we then followed her to the room one usually passes by extra quietly when the door was closed. The family consultation room. This is where you usually saw the extended family of someone critically ill, consulting with a doctor and one instintively walked by more quickly while lowering your voice out of repsect for thier sorrow. This time we would be the consultees.
We waited anxiously for the doctor who would be handling our son's neonatal stay and, we prayed, his recovery. I do not even remember his name or his face. I only remember his voice, somber, as he broke the news to us.
"At this point your son's billi levels are so high that is almost inevitable that he has brain damage. The question is how much. The only option is to do a double blood exchange using a universal donor blood type. Then it will be wait and see as we must then hope that your son does not reject the new blood and or develope a blood infection. I'm sorry - I really can't tell you more than that."
To be continued...