Tuesday, May 18, 2010

The Journey Continues: Stollery Children's Hospital NICU

May 13, 2010
The drive to Edmonton was filled with much quiet time, some tears, and lots of talking and praying. You do not realize how bumpy even a highway is until you are healing from surgery. It took us a bit longer to get there than usual--due to the slowing down for all the bumps we had not noticed as much on prior trips to the big city.

When we got to the University of Alberta, we had to find parking and realized that the walk from the parkade to the Stollery was quite the trek for the Mama who had recently given birth. We had imagined that we would have to get a hotel near the hospital and I was already dreading the many walks we would have to make from the parkade to the NICU.

When we finally arrived at the NICU, after asking for directions many times, we found our precious baby contently at his station:

He had been really hungry upon arrival and had consumed all of the milk I had expressed plus some formula. Poor little guy hadn't been allowed to eat before the flight or during the flight since they were afraid the turbulence would cause him to throw up. He had, however, made the flight just fine. Brave little guy. When they arrived, he was immediately put under the Billy Lamp (photo therapy for jaundice) and we cherished the moments where we could hold and cuddle him when he wasn't under the lamp. Here Daddy is talking to our little man, telling him how special and brave and amazing he is, after we arrived:

That worry I had about having to find a hotel to stay at was immediately taken care of. Mikail's nurse heard our story and realized that I had just had a cesarean birth and was still in quite a bit of pain, so she advocated for us to get a 'parent room' right on the ward. She suggested we not talk about it too much because normally parents are only allowed to stay in a parent room for one night, but with the weekend coming, we just had to make sure the social worker didn't hear about it the next day and we should be able to make it through the weekend by staying right there with Mikail. The room we got only had a single bed and a rocking chair, but we had brought some blankets, asked for a few more and made a make-shift bed on the floor for Jason. Not the best accommodations, but we were able to stay at the hospital with Mikail--a blessing. The next day we were moved into a bigger room where we at least each got a mattress.

May 14, 2010
Being able to stay right at the hospital meant that I could nurse Mikail. This was a blessing, yet a challenge, because at the QEII in Grande Prairie we were put on a feeding schedule for Mikail that worked really well. Here, anytime he made a peep they called me to feed him--feeding on demand. It was stressful and did not work. Just because he was making a peep didn't mean he was hungry and then the challenge of getting a good latch was just made even more difficult, leaving me in a lot of pain and Mikail frustrated. Then the nurses kept saying that if he didn't latch within five minutes we should give him formula. My Mama heart did not believe this was the right thing to do, so many tears followed. Finally after many frustrating, unsuccessful feeds we were able to tell the nurse that yes, most babies do well with "feed on demand" but ours was put on a schedule and this had worked in Grande Prairie. Could we not just try it for a bit and see what happened? She reluctantly agreed and guess what? IT WORKED. So we were back on feeding every 3 hours and I also pumped to try to get my milk to come in more. This also allowed Jason to take a night time feeding, which was important to him--the bonding it brought. This also allowed me to get some much needed sleep.

In the morning, we met with the pediatrician and were told that the CT scan from Grande Prairie also showed a hairline fracture on Mikail's skull. WHAT? Why were we not told this? And why did a nurse mention this to us the day before (leaving us shocked) before the doctor did? More and more we were believing and finding out that Mikail's seizures were not caused in-utero. More and more we were believing that something happened during the long labour and birth to cause something that made him have seizures. The pediatrician said that the fracture was most likely caused by Mikail's head being forced up against my pelvis during the pushing stage--since he was twisted and "sunny side up" it would make sense that he was wedged up against my pelvis. It could also be that the force of the vacuum suction caused Mikail's head to be forced up against my pelvis, causing the fracture. Two options or a combination of the two...but definitely nothing to do with anything during the pregnancy. Of course this would have to be confirmed by Grande Prairie who was being instructed to look at my placenta (we later found out from our family doctor that my placenta was normal and nothing in-utero caused these complications).

As we met with the pediatrician he informed us that he did not believe that the MRI would happen at all. WHAT? Wasn't this why we were being sent to Edmonton in the first place? Jason was okay with this...we didn't 'need' to know details--we would deal with what came when it came. I, on the other hand remained quiet, pleading in my heart and soul with God to somehow allow this MRI to take place. I needed answers. I needed to know what we were going to be dealing with in the future. I needed to know what I as his Mama could do to help him reach his potential. Just as I was silently pleading with God, a neurologist came by and said that we were up next for an MRI--as in 'get this baby downstairs NOW'. Talk about a quick answer to a Mama's pleading heart. The reason we were sent to Edmonton for the MRI is that in Grande Prairie they don't sedate for MRIs and an infant has to be sedated. The nurse quickly fed Mikail some formula while Jason and I filled out forms and we later found out that they didn't even need to sedate Mikail for the MRI...he slept through the whole thing. Another God moment...how our little man slept through an MRI that sounds like jack hammers next to your ears, is incomprehensible--definitely a God thing (and yes his hearing is fine...he passed the hearing screening before we left Grande Prairie).

While Mikail was having the MRI done, I had to go and "pump" because I had just missed Mikail's feeding since they had to hurry him to the MRI. There was a "pumping room" right on the ward. How strange it is to sit in a room with two other women and have each a contraption attached to your boobs that is expressing milk. Do you bring something to cover yourself? Do you talk? Do you keep your eyes averted? Do you engage in conversation? Do you ask about their child in the NICU? I never did find out what the "pumping room etiquette" was. When I was finished in the "pumping room" I returned to our room to find worship music quietly playing and Jason down on his knees, praying for our precious little boy and meditating on this scripture: But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall. Malachi 4:2. Seeing my big, strong, husband down on his knees pleading with God to heal our son also brought me to my knees and right there on the floor of our little room we wept, pleading with God to heal our son, through tears trying to sing the lyrics of the songs playing on the iPod.

Somewhere in this time I needed to find something to eat. Jason was fasting (I obviously couldn't join him because I needed to keep my milk supply up) and said he needed to stay and keep praying, so I went alone. When I returned I found him standing in our room with his face and hands toward heaven, tears streaming down his face, singing praises to our God. I needed the strength he was showing and wrapped my arms around him hoping I would feel some of his strength. We remained there, slow dancing and singing along to the music on the iPod until the phone rang and we found out that Mikail was back. We quickly offered one last prayer to our Heavenly Father and went to be with our son.

The neurologist and his team looked at the MRI immediately and in no time we were meeting with the neurologist. What we learned from him and what we got as Mikail's prognosis in Grande Prairie were two completely different stories. The neurologist informed us that the MRI showed that Mikail had a stroke, most likely during labour and delivery, but an echo would have to be done on his heart to make sure the clot didn't come from a defect in his heart. This stroke then caused the seizures. The stroke affected three parts of Mikail's brain:
1. One very small part of the front right side of the brain which will never affect him.
2. One larger part of the front left of the brain which might affect his peripheral vision and it might not.
3. The largest affected area was the back left of the brain, which will most likely affect his right hand motor skills.

The first part we don't have to worry about. The second part which might affect his vision, is quite doable. He will have his vision checked in a few months and glasses are always an option. When talking about the third affected area, the neurologist said that if you're going to have a stroke, the best time to have it is as a newborn, because the brain can heal itself or create new pathways to compensate for damage done. So, it might do that, or he will just automatically be a 'lefty' with a dominant right hand. None the less, we will start physio on his right hand in the next couple of months to try to strengthen his motor skills in that area.

Can you imagine our gratefulness when we heard this news? We literally felt like the calves described in that verse in Malachi that we had been clinging to. We danced with joy. It was so far from what we had heard in Grande Prairie. When the neurologist said that he thought that by the time Mikail is 2 years old no one will know that he ever had a stroke, I couldn't stop the tears that were brimming the whole time. The next step was to have an echo done on his heart and an ultrasound done of his brain to try to see what the cause of the stroke was. We would have to wait on these tests until Monday though.

May 15 & 16, 2010
We returned to our room and spent some time in prayer of thanksgiving to God for this amazing news. While we were in our room, some special paper work was completed and Mikail was allowed to 'room in' with us. Which means that he would get a normal bassinet and he would stay with us in our room for the weekend. Before most feedings we had to bring him to his station in the NICU and have his vitals checked. We were even able to take him off the ward and walk the hospital halls with him or take him to lunch or dinner with us. If we preferred we could also leave him at his station and take a break and his nurse would watch him. So our Saturday and Sunday were filled with mini outings walking the hospital floors with Mikail and just hanging out waiting for Monday. Here are Mikail and I hanging out in our 'parent room':

May 17, 2010
This was a looooong day of waiting and not knowing whether Mikail would get the tests done that he needed to have done. Jason and I were both completely ready to go home and had been told that we would most likely be discharged by late afternoon. The tests were completed by this time, but the neurology team was not going to come up to the NICU this day after all. Let's just say we were beyond disappointed. We had to stay another night to wait for a consult with the neurologists.

May 18, 2010
The neurologists finally made their way up to the NICU in the morning and we were told that Mikail's echo came back as normal. His heart is in perfect condition. The ultrasound of his brain came back showing no additional abnormalities in his arteries. No one ever came out and said it, but this left the option that the cause of the stroke was due to labour and delivery stress. As soon as we had the consult, the discharge procedure was started and by noon we were on our way out of Edmonton.

Our drive went in 90 minute stints because Mikail was really small for the car seat and was supposed to get breaks from it every 90 minutes, so the drive home took a little longer than usual, but by 9 p.m. we were home and after 9 days of being checked into 3 different hospitals, having a plane ride to Edmonton, having a long truck drive home, and a lot of medical drama in between, our precious little one was able to come home and sleep in his own crib for the very first time.

There are still a lot of unanswered questions and a long road ahead with physiotherapy, occupational therapy, and follow-up visits to the Stollery Children's Hospital, the rehab centre, our local pediatrician, and our family doctor. More on all of this in the next post.

Through all of this we are still so incredibly blessed.


Anonymous said...

Pumping room etiquette:

I always found the pumping room so awkward. Usually there was other women in there too, so it's weird to have 2 or 3 women in a small room together and having no conversation....plus there were those who sat next to me and pumped out 2 full bottles worth in 10 mins flat, while I had issues producing even 20 ml worth. That made me jealous/frustrated.

I did end up having a conversation with one woman, actually! But that was mostly because her nurse didn't know how to use the pump (what?) and so I explained it to her. It made things less awkward when there isn't silence!

- Olivia Greenham

Iris said...

Oh I hear you on the jealousy/frustration of sitting beside someone who pumps out two bottles in no time while I sat in there pumping my measly few mLs in 30 minutes, but I still believe that it helped my milk come in faster.