From the eyes of a NICU WARRIOR MAMA!
I had a placental rupture when I was 26 weeks pregnant. Coincidentally, my husband was out of town for work, and I was home with my other two children. I was only six months pregnant and had no complications, so I thought it was safe for him to leave town of course. After about an hour of “false labour” I knew something was seriously wrong, so I called 911. It took the paramedics of a lot of convincing to get me out of the house without my other kids, but I really had no choice at that point. A couple of police officers stayed with my kids until a family member arrived.
We went to the closest hospital to my house, which was the Misericordia, and Francis was born about 40 minutes later. It was about two hours start to finish by the time he was delivered.
He was stabilized after about four hours, and the first time I saw him was when he was in the Stork 1 Transport Incubator getting transferred to the RAH NICU. I was still in shock and high on adrenaline at that time – I definitely didn’t realize that this was the beginning of our NICU Journey.
My husband got back to Edmonton, picked me up from the Misericordia, and we headed over to the RAH. Seeing Frankie for the first time in the NICU isolette was so traumatizing and heartbreaking: he was so tiny and hooked up to so many wires that he looked fake and was shaking. I couldn’t even comprehend that this was my baby. As Francis was my third child, I’d been through two typical childbirths and then of course took each baby home afterwards, but this time, that was not happening. After about 30 hours of no sleep and not leaving the hospital, being full of adrenaline in disbelief, one of the nurses convinced my husband to get me to go home and try and eat, shower and maybe sleep. So I left the hospital empty-handed: without Frankie. I just remember my stomach physically hurting and thinking “My God, something is so, so wrong.” At that time, someone told me to take it day by day but even that was too much. It was more like second to second.
My husband and I and my two kids definitely did not realize that this was going to be the beginning of a three-month hospital stay. We had no idea what the wild ride ahead of us was going to hold. It was very touch and go for the first week or so. At that time, I didn’t realize it, but looking back now and remembering others talked about him, Frankie was a very, very sick baby.
On day 3, my mom brought my other two kids in to see Francis. Maggie was 3 and Vince was 10. Vince said he was kind of scared of him and how he looked.
On day 4, a nurse offered me to help with his diaper change. I was thrilled but definitely terrified. I didn’t know that I was allowed to touch him let alone change his diaper, so with the nurse’s help, of course, I did my first of many successful diaper changes.
At first I wasn’t overly involved in rounds. It’s very intimidating having a group of doctors come up to the bedside and use medical lingo, however each day, I got more and more comfortable. I knew that there was some brain bleeding that had been mentioned, I just thought it was something that happened to preemies, and they didn’t really know what it meant. They talked about hydrocephalus, again another foreign concept. Francis did get a reservoir inserted at seven weeks old, our first trip over to the David Schiff site, which was so scary. We had been at RAH for almost two months – it really was becoming like home for us all. So switching hospitals and going to the unknown was just scary. Then he came back and we were graduated to the other side of the NICU. Even though the day-to-day life or death worry was gone, it was so hard every single day, day in and day out, coming to the hospital. I was literally obsessed with being there. I had not missed one day for two months – and then I got mastitis from not pumping properly, and I was down for the count. My husband forced me to stay home for a day. I called the nurse, I don’t even know how many times, to check up on Frankie. She was very patient with me, thankfully.
At that time we were still holding out hope that Francis would not need a shunt, and unfortunately that was not the case. He got his shunt put in about ten days before we were discharged. That was his third surgery, as he had also had a double inguinal hernia repair, again back and forth to the David Schiff.
In the end, here are some stats on Frankie:
Frankie has multiple diagnoses, cerebral palsy, chronic lung disease, dysphagia, and many more.
However, we are here and going strong. I could not have made it through without the support of my husband and family, and especially our nurses.
Liz - Frankie's Mom
