Thursday, May 13, 2010

The Journey Continues: Grande Prairie NICU

Many people are blessed with a "Happily Ever After" following their "Labour of Love", yet many continue on a journey that is so different than they had ever imagined. Ours is one of those "continued journeys":

May 10. 2010
Even after 38 hours of labour, I could not sleep after I got out of "recovery". I needed to make sure our baby was okay and then there was the fact that he needed to be fed every hour or two. We were so thankful to have a few visitors come and meet our little one--especially since we both do not have family around.

Late at night, right before a feeding I noticed that Mikail's face had a rhythmic twitch to it. It reminded me of all those courses we as teachers have to take each year in regards to seizures in children. I showed the nurses, yet they were not concerned. They said if it happened again, we should call them. The next time it happened, I noticed that his right leg and right arm were doing the same rhythmic motion while his eyes rolled to the right. We called the nurses, but he had stopped before they arrived.

At this point I was exhausted. I had not really slept since 4:30 a.m. on May 8th and it was the early mornings of May 11th. When the nurses found this out, they said they would take Mikail to the nurses station and give us a bit of time to sleep. They would bring him back for his feeding. We were blessed to have a private room that even had a bed for Jason to sleep in. We took advantage of this time to get some much needed sleep, even if it was only for an hour or two.

May 11, 2010
While at the nurses station, Mikail had the same seizure type symptoms I had been telling them about and they rushed him upstairs to the NICU where he was treated for a seizure. The pediatrician was called and an EEG was performed as soon as possible in the morning. The EEG showed unusual brain activity, which confirmed the seizures that I had earlier been trying to convince the nurses of. He was put on phenobarbital (an anti-seizure medication) and the seizures stopped. At this time a CT scan was called for, but the machine was down so we had to wait until the next day. They were able to do an ultrasound of the brain at this time. The NICU nurses put us on a strict schedule with Mikail in regards to changing and feeding him, which worked wonderfully. We came up to feed and change him every three hours and inbetween either stayed with him to hold and cuddle him or went back downstairs to our room for some much needed rest.

Mikail was weighed before and after I nursed him. If he hadn't consumed enough from nursing then Jason would get a bottle of formula ready and feed him the remainder needed to keep up his weight.

May 12, 2010
Mid-morning we found out that the CT scanner was up and working again and that we needed to get downstairs immediately. So, off with our wonderful NICU nurse, we went. Nurse L and Jason rushed ahead of me while I slowly shuffled behind them, trying to keep up without being in too much pain (why we did not grab a wheelchair I do not know). Later in the day Nurse L let us know that the pediatrician wanted to see us and she would stay with us. As soon as I heard she was to stay with us, I knew it was bad news about the CT scan. We entered a small little conference room and the pediatrician told us immediately that he had bad news for us. Our hearts fell. We were told that Mikail has left brain abnormalities and that we were to expect a difficult road ahead of us raising this little boy. We were told that he would most likely never walk or talk and that he would need to be fed with a feeding tube, might not be able to see or hear etc. etc. etc. When I asked what could have caused this the pediatrician felt that it was due to lack of oxygen during the pregnancy sometime--perhaps the umbilical cord was kinked during a time of important development of the brain. We were devestated. I finally broke down and wept while Jason remained strong and just held me. Nurse L was in tears with me as well. She had been taking care of our little boy during the day shift up until this time.

We returned to Mikail's station in the NICU, closed the curtains around us, lifted him out of his bassinet, wires and all, and just held him and rocked him and wept. Finally we were able to speak again and we lifted up prayers of thanksgiving for our little miracle, we pleaded with God to heal our precious little boys brain, and we started to speak words of healing over him. We told God that we did not understand why he acted like a normal baby. Why he was able to breast feed but were told that he would need feeding tubes for the rest of his life. Why he was able to move his arms and legs like a normal baby and look at us or jump at sudden noises. All these things did not add up with what the pediatrician told us. So, we began to believe that although we are blessed to have earthly physicians, we have a Greater Physician and we would trust and believe in Him.

When we got back to our room we both broke down, having Mikails life flash before our eyes. Jason realized that he may never throw a football to his son and it was upon this realization that the devastation of what we had just learned began to sink in. And now to make phone calls home to family and friends to explain what had happened, was so difficult. Thankfully we were able to get a hold of our pastor and he and his wife were able to come and hear our story and pray with us that very evening. What a blessing.

May 13, 2010
In the morning the pediatrician wanted to meet with us again. He had arranged this the day before because he knew that once the initial shock had worn off we would have a zillion questions, and we did. I had my little notebook of questions ready and on the top of the list was "What type of condition will he have. What are some possible names?" I wanted to be able to call my Mom and have her research what we were possible going to deal with. Our internet connection in the hospital was terrible and I did not have energy or the time to research things at the moment. All the conditions the doctor gave us as possibilities did not seem to fit Mikail, so when we asked to have a second opinion, we found out that this was already in the works. The pediatrician said he had contacted a neurologist at the Stollery Children's Hospital in Edmonton and they were willing to do an MRI on Mikail to assess his condition. He was just waiting to hear about transferring him. While we were discussing this with the doctor, the transfer was confirmed and we found out that within an hour he would be airlifted to Edmonton and I could possibly go along. This would be decided once the team arrived at the hospital. They were still in-flight to Grande Prairie. Wow! Things were starting to move quickly.

While all of this was happening, I had also been discharged from the hospital, but in the drama of it all was unable to ask the obstetrician the questions I had about my own healing process. All we had been told was that we would get a hostel room where I could stay so that I did not have to be driven to and from the hospital to feed Mikail. Jason would have to stay home. All this, however changed when we found out we were heading to Edmonton. We quickly packed up our belongings and packed them in the truck. Jason would follow us to Edmonton and meet us a few hours after our arrival there. While he was packing up the truck, I was madly pumping breast milk for Mikail to take along for after the flight so he would not have to have formula given to him. Not that it really mattered if he was given formula, we just thought it was better if he had breast milk if at all possible.

At about 1 p.m. the transfer team arrived and came into the NICU with the HUGE contraption, otherwise known as "Stork 3", that would be where Mikail would be kept in while flying to Edmonton. The team told us that the flight had been extremely turbulent and that the plane is quite small, so they would recommend that for my own comfort and healing (from the cesarean birth), that I go along with Jason in the truck. After talking to the team and feeling somewhat comfortable with the fact that they would take care of our baby, we agreed. After a tearful goodbye and a Mama's pleading to guard and protect her son, we were off to Edmonton.


Anonymous said...

I'm somewhat jealous that you had the option to go with him. I didn't! And apparently that option doesn't come along very often!

- Olivia

Iris said...

Yes, the option was given to me, but they said the turbulence was terrible that day and I was still in a lot of pain from the c-section, and get motion sick, so the recommended that in order for me to better help Mikail once we got to Edmonton it may be best if I drive. Although it tore my heart apart to leave Mikail, it was the best thing in the long run because when we got to Edmonton I was feeling somewhat rested and could feed him.