My husband and I made our way to the hospital and waited for the head pediatrician to update us on the reason why Nathan was leaving the NICU at our current hospital and be transferred over to the Children’s Hospital.
It didn’t take long before an entire team came and joined us.
In a matter of minutes we were told “Your son is displaying symptoms which are very uncommon. It is why it’s best for him to go where he can be seen by the top specialist at the Children’s Hospital NICU. Something is wrong with him and it’s outside our expertise.” I was not even sure at that moment if I should feel relieved or anxious? I’m happy he’s being seen by the top specialists but I’m concerned as we still do not have an answer on what is going on with my baby boy.
We proceed to sign the consent form and Nathan is brought by ambulance to the Children’s Hospital. I can already see that the level of care is different. Nathan is looked after by more than one nurse. We have more privacy and more room. There’s a window in Nathan’s cubicle which made me so happy. It made the atmosphere less depressing. It compensated for the new sets of medical equipment hooked up on Nathan.
We are introduced to a new set of specialists:
The Genetic team
The Metabolic team
The Neurological team
Infectious disease specialist
…And the list goes on.
After the introduction are completed, they advise us that a series of test will be performed to pinpoint which team will take over Nathan’s file and determine what could be the root cause of his symptoms.
In all honesty I was so overwhelmed.. I’m sure I missed a few other departments.
I stand there as they poke Nathaniel constantly unable to locate his veins. I stare helplessly as my baby cries from the repetitive poking and probing. I just want to shout and tell them to leave him alone. But they need his blood. God help me, the sight is too much. So many grown body standing over a small human, flipping and turning him as they are doing “their assessment and blood work”
It finally ends and I can finally breathe. I was holding my breath this entire time. I can see how stressed Nathan looks and I refrain from holding him. I don’t want to disturb him as he finally falls asleep. It’s another thing I struggle with. I always feel as I did not hold him enough. I was always afraid of disturbing him. He was constantly poked and moved around all day. Whenever it happened his breathing would become more labored and I couldn’t stand the sight so I decided to not bother him. Thankfully a nurse reassured me and I held him as much as I could. I noticed his breathing was less labored every time I held him.
We spent the remainder of the day with our son. Some results took multiple weeks and we were not going to have an answer anytime soon. Once the time for visitation was over, we left for the day. I wanted to sleep there but the nurse advised me to go home and sleep as my milk production was still low and my body was still recuperating.
My body! I forgot about my body. My feet were still heavy and swollen and I’ve stayed cramped up on a small chair all day. I hadn’t eaten. I don’t even recall drinking anything since I got there. I didn’t move as I didn’t want to miss anything.
We kiss our son goodnight and go home.
Around 2 am we receive a call from the NICU. A nurse calls and advised that they “noticed some changes” and Nathan is now on a EEG scan to observe his brain activity. He’s doing fine and they will see us first thing in the morning. How am I suppose to sleep now? My husband knows I will not be able to sleep. We make our way to the hospital.