Decision Made.

It's been far too long. Only appropriate that I follow my last post was about the decision as to whether we should get Logan a cochlear implant with this...decision made.

Logan is getting a cochlear implant. It took us 15 months to make the decision. Surgery is scheduled for November.

We met with the surgeon for the pre-op appointment last week. When he asked if I had questions, I broke down. The tears started to fall. I am anxious, I told him. Jokingly, he said that he won't charge us for the $50,000 device that Logan is going to get, but for Kleenex, I'll have to pay. (We actually don't pay a cent for all of this.) He reminded me that some anxiety is normal. I know this. He stared me in the eyes and said, "I'm not anxious about this at all." That made me smile. He explained that this is a study and as a result, surgery must be done perfectly with minimal risk. He performs four cochlear implant surgeries per week and has been doing them for twenty years. It's going to be ok and I'm just trying to breathe.

When we received Logan's diagnosis, I immediately went into research mode. I was determined to learn as much as I could and speak to as many people as possible so that we could make the best choice for our child. I don't think I truly let myself grieve his hearing loss. I just wanted to fix it, knowing full well that hearing loss can't truly be fixed. After 15 months of it being a maybe, it became a definite. A definite with a date for a life-changing surgery on my baby boy's brain. It completely overwhelms me. The tears fall often and without warning. Thoughts and worries fly through my head in the middle of the night. I know in my heart that we've made the right decision but that doesn't make the next few months any easier. It's all coming out now.

So, why? How? What was it that helped us make our decision? Right after Logan's diagnosis, I was in touch with a mom of a boy who is about four now. He is unilaterally deaf, although I don't think his is quite as severe as Logan's. He does not have a cochlear implant, but his mom and I chatted about hearing loss and its challenges. We've been in touch and I recently wrote her to let her know that we are going ahead with a CI. She asked if I would mind sharing our decision making process. This is what I wrote:

We both walked out of our first appointment at Sick Kids saying 'no' to a cochlear implant. After a couple weeks of processing it all, I realized that I needed to learn more so that, in the future, I could explain to Logan why we made the decision that we did. 

I went to the Bob Rumball Centre (for the Deaf) and met individuals in the deaf community. I requested to speak to parents who have a child with SSD (single-sided deafness) and went ahead with a CI at Sick Kids. I joined Facebook groups from all over the world -- parents of children with CIs, parents of children with SSD, adults with SSD....I posed questions to these groups and scoured past posts. It was here that I started warming up to the idea of a CI for Logan. 

We all seem to know at least one adult who is deaf or partially deaf in one ear. I started speaking to those people too. They've lived happy and productive lives for sure, but it has not been without its challenges. One of my brother's best friends is completely deaf in one ear, like Logan. We spoke extensively. He explained the challenges of going to restaurants, work events, riding in a car, the fatigue etc. He is managing but it can be tiring and frustrating.This was a story that I heard over and over again from individuals with SSD. In adulthood, my brother's friend had an MRI to see if he was a candidate for a CI. Sadly, he was not. He said that if this had been available to him as a baby, he would have wanted his parents to go ahead with it. Most of the adults I spoke with said that the challenges of SSD started presenting themselves once they started school. This was a big one for me, as Logan's speech and language is currently on par or better than his peers. For the most part, he seems like any other child who has bilateral hearing. However, I have noticed the difficulty he has in localizing sound. 

I've spoken with three parents of toddlers who received cochlear implants as part of this study. Two of them are nearly 2 years post activation. One of them was activated in January. All three parents said, without a doubt, that it was the best decision they could have made for their child. Testing is showing that their child's deaf ear is now hearing within "normal" ranges. This happened in less than 6 months post activation. 

In the future, he can choose to take the device off whenever he wants. Even though we are making this life-changing decision for him, we are ultimately giving him the choice to hear or not out of that left ear. That was the only thing that the two of us could agree on for months! 

I spoke to the mom of a 22-month old boy, who received his cochlear implant earlier this year. The conversation with her couldn't have come at a more perfect time. While my anxiety and worries are still there, she has given me an idea of what to expect. It feels all-consuming right now, but she assured me that it is just a regular part of their daily routine now. She was me a year ago, breaking down in front of the surgeon. She gets it and that's more comforting than anything else. Within months of her son's surgery, he was hearing within a normal range in his CI ear. That is truly amazing to me. We are meeting up with this little boy and his family very soon.

We were born with two ears. We are meant to hear with two ears.

Logan and Finn

With his beloved "ba-pa"

On their first day of grade one

A trip to the zoo with their cousin

Hiking in Portugal. General update post to come :)

Decision?

Decision time?

We waited for nearly a year (from finding out about his UHL*) to find out whether Logan would be a candidate for a cochlear implant. There were many appointments and tests. Countless hours spent in sound proof audiology rooms. It was the MRI that would determine whether we would have options to help his hearing loss. If the MRI showed that he had some cochlear nerve in his left ear, he would be a candidate. If not, he would learn to adapt to hearing 

*unilateral hearing loss

A few weeks ago, Logan underwent an MRI under general anesthetic. I was anxious, but I wasn't the wreck that I was on surgery day. I set my alarm for 3:30am to breastfeed. 4am was the breast milk cut off for his 8am ultrasound. I woke early to force myself to eat breakfast. Logan woke around 6am. We arrived at the hospital for 7am and immediately changed him into his tiny hospital gown. We walked around, played with toys and sang songs. At 7:30, the nurse came in to ask a few questions, take his temperature and check his vitals. I met the radiology tech and the anesthesiologist. Logan quickly won the hearts of all of the nurses with his smiles and waves. 

At 8am on the nose, I lay my sweet boy on the table and told him that I loved him while the anesthesiologist held the mask over his tiny face. Logan was screaming, with a terrified look in his eyes. I stroked his head and I told him that everything would be ok. Within 10 seconds or so, his eyes started to flutter. A few more seconds passed and he went limp. They promptly booted me out (as they told me they would), so that they could insert the IV and wheel him into the MRI room. They prepared me for what it would look like as he was put to sleep. They even offered to take him from me if I thought that it would be too difficult to watch. Not a chance. It wasn't about me. It was about Logan. Of course it was difficult, but I wanted my baby to see my face and hear my voice as he was put to sleep. 

It took longer than expected. But man, that place is awesome. If your child needs to be in the hospital, Sick Kids is the place. The nurse came out right at the 45 minute mark to tell me that he was doing great and breathing on his own, but there was still some imaging to do. I had been told that it would take about 60 minutes. I was updated when the test was complete (it took nearly 1.5 hours) by the radiology tech who gave me a big thumbs up. Logan was in recovery and I was allowed to go in as soon as he started to wake. It took another half hour at least before he woke.

The kid is a force. When I went into recovery, he was in the nurse's arms. He woke and immediately tried to climb out of the crib! I breastfed him, hung out in recovery for another 30 minutes and was then given the go ahead to head home. 

Right after the test began, I went to grab some tea. As I sat in the hospital's atrium, I looked up at this poster:

It's massive. Obviously. I thought about how lucky I am. It's incredibly nerve-wracking to see my baby put to sleep for an MRI, but I got to take him home a few hours later. My healthy baby boy and I went about our day. After sitting in the atrium for a little while, I went back to the MRI waiting room. A very sick young child was wheeled in, attached to multiple machines, with two exhausted and worried parents following shortly behind. Have you seen Sick Kids' Mother's Day ad?

Last week, I received the call that Logan is a candidate for a cochlear implant. We have options and for that I'm grateful. Jenn and I now have a big decision to make. I'll leave it at that for now :)

Logan is ONE!

Our sweet Logie Bear is one. Really 13 months and 13 days-ish. Oops. The year flew by in some ways, but then also felt long, particularly because of all of our sleep challenges.

"I AM ONE!"

I was extremely nostalgic leading up to his first birthday. Mainly because of the way that he journeyed earthside. As much as I've processed my labour and delivery, I'm not over it. I probably never will be. I guess I'll just eventually be able to be with it. But, this isn't about me. This post is about Logan turning one!

On the eve of his first birthday.

We celebrated our sweet boy with a small family dog-themed party. We ate delicious middle eastern food and enjoyed a tasty cake. The kids played and Logie happily crawled around amidst his favourite people. 

 His party ended up being right in the middle of a snow storm. We decided to head out for a little walk once everyone had left. He absolutely loved his first ride on the sled!

• He is constantly babbling. He also says a few words, "da" (dog), "bye-bye" (with a wave!), "Pa pa" (Grandpa), "Mama" (for Mommy or Mama), "hi" or "halla" (hello). He will repeat quite a few sounds too. While I do worry about certain sounds not developing due to his hearing loss, he appears to be right on track from a speech and language perspective.

• He will be having his MRI to determine whether he is a candidate for a cochlear implant in early April. The thought of him going under general anesthetic again makes me anxious, but I know he will be ok. We will receive the results of the MRI within days and then a decision will be made by the cochlear team. I've done quite a bit of research, including speaking to parents of children who have been implanted for unilateral deafness. I'm leaning towards wanting to do it, if he is a candidate. Jenn isn't sold on it yet. This deserves a post of its own!

• Food! The kid is becoming a tiny foodie. He loves flavourful and healthy food. One of his favourites is my chickpea curry. He also loves my homemade tomato sauce that I pack with veggies and meat. He tends to prefer savoury foods, over sweet. I'll spice up his food with curry, turmeric, paprika, chili powder, cinnamon, cardamom, ginger and lots of garlic! He loves to feed himself, but will also let me feed him some of the messier foods. For breakfast, he eats toast with nut or seed butter, banana pancakes (literally just egg, banana and cinnamon), sheep yogurt with fruit and hemp hearts, homemade muffins, smoothies, eggs with fruit. He isn't keen on scrambled eggs, but I keep trying. He eats three meals per day and one or two snacks. He still breastfeeds about 4-5 times per day and drinks quite a bit. 

• Sleep is slowly starting to normalize. He FINALLY goes through the night without breastfeeding. I had to cut the cord. The sleep deprivation was awful. He still wakes in the night, but typically settles himself in a matter of minutes. He is waking very early in the mornings, but hopefully in time, we can push that too!

• 4 teeth! His top teeth finally made their appearance. It has made eating much easier for him. He's a giant suck when it comes to teething and doesn't handle it very well. The poor guy seems to be working on a fifth tooth. He's congested overnight and has a bit of a rash on his bum. During the day, he's generally happy and unaffected by teething. 

• Playing with his sisters is likely his favourite thing to do. It warms my heart to see them play well together. He gets himself right in there and they always happily include him in their games. He is constantly being lifted, rolled, hugged, squeezed and carried. He usually doesn't seem to mind too much. The girls will put him in his play tunnel and pull him around the house or push him around on his little motorcycle (a favourite for all - thanks Allison!) We've purchased a few large items recently...which means large boxes! The girls have been in heaven, turning therm into dog houses and castles. Logan LOVES these box houses and will sit in them on his own when they are at school. He will chat to himself happily. 

• He loves being outside. He is quite happy in the stroller, especially since I turned his seat to face out. We walk the girls to and from school each day and are often out at other times as well. We live in a very walkable neighbourhood, so I often run errands on foot. He also loves being in the carrier so we do quite a bit of that too. 

• He participates in two gymnastics-style classes each week and LOVES both. He crawls, climbs, slides, explores and bounces for 45 minutes straight. We also do a music class once per week. He adores music and often bops his head and waves his arms. 

A Canadian boy and his Grandpa

Most of our family pictures these days are selfies...

His light coloured eyes need to be protected,
so says the eye doc.

Tolerant big sister

The kid climbs everything! 

His birthday present finally arrived and he is thrilled!

In the OR

Staring at a screen with my baby's name and "In the OR" next to it for two and a half hours was one of the most emotionally difficult things that I've ever been through. Even harder than that was passing my baby over to a nurse and watching him walk into the OR.

As I briefly mentioned in a previous post, Logan had surgery at Sick Kids last week. Thank God for the reputation of the hospital and the surgeon who operated on Logan. He truly is one of the best in his field. Every parent hopes to never set foot in a children's hospital, but since we had to, I'm incredibly grateful to have Sick Kids down the road.

Before I go on, the surgery went perfectly and Logan is doing as well as can be expected.

Shortly after birth, our midwife noticed that Logan had hypospadias. The hole of his pen*s wasn't in the correct spot and his urethra wasn't straight. He was peeing normally and otherwise fine, so there was no immediate action to be taken. While he could live normally with this condition, it would have affected him later in life, so on the recommendation of the surgeons at Sick Kids, we chose to go ahead with surgery. As it turns out, his condition was much more severe, so going ahead with surgery was definitely the best course of action.

I have that weird selfie look, but Logan looks
adorable!

Hopsital bracelet on a chubby little ankle

As with most surgeries, Logan was not allowed to eat after midnight. Fortunately, he was allowed to have breast milk that morning. I fed him at 6am. We dropped the girls off at a friend's house at 7:40 and then headed to the hospital for 8am. After checking in, we waited to see the nurse. She confirmed that Logan was healthy enough for surgery and then we changed him into a hospital gown. By 9:30, he was visibly tired. He normally goes down for his first nap by 9am. But, with all of the other kids, parents and things to look at, he was overstimulated. We watched doctors come out and talk to parents and patients. We watched babies and little kids walk or get carried into the OR. Anticipation built as we waited for that to be us. As his scheduled 11am surgery time approached, he was becoming cranky from fatigue and hunger. I walked him in the hall and kept him distracted as best I could. While speaking with one of the fellows, he went into full on hysterics. I took him into the hall so Jenn could finish listening to what the doctor was saying. The poor guy was a wreck and couldn't understand why I wouldn't feed him, so I eventually passed him over to Jenn. In a state of sheer exhaustion, he finally fell asleep. His surgery was running late. We spoke with the anesthesiologist and the OR nurse who would be by his side for the entire time. "I have two children of my own. I will treat your son like he's one of my own." Said the nurse. He had been doing this for 24 years and had a level of confidence about himself that was comforting. I wanted to take Logan into the OR myself (parents are allowed to do that at Sick Kids), but it was recommended that we pass him over to the nurse still sleeping. Hopefully, they would be able to gas him while he was still asleep. The transfer was made successfully and we watched the nurse walk through the doors to the OR with our sweet sleeping baby in his arms.

I was desperate to keep it together. To stay positive in my own head. Jenn broke down in tears. That's usually me. I fought back the tears as best I could. We composed ourselves. Our little guy would be ok.

After checking into the surgical waiting room, we were told to expect that he would be in surgery for 2.5 hours. It was suggested that we grab some lunch. I felt weak and exhausted from carrying Logan for hours. I didn't want to eat, but knew that I should get something down. Jenn and I mostly ate in silence. We both agreed that it had been one of the most emotionally difficult mornings of our life.

We recognized that for all of the reasons parents bring their children to the hospital, this is nothing in comparison. The strength of those parents going through severe illness or injury with their children is truly incredible.

After lunch, we sat in the waiting room. Jenn got some work done. I tried to read, but ended up on reading the same sentences over and over again. We watched surgeons come out and take parents into the back room to discuss their child's surgery. We watched "In the OR" change to "In Recovery". I heard the surgeon say Logan's name to the volunteer before we saw him. He called us into the back room to tell us that the surgery had been successful and Logan was on his way to recovery. He explained what had been done. He also said that Logan's condition was much more severe than we were initially told, so it was good that we had gone ahead with it. He said that the end result is perfect and talked about care for the next 10 days or so. He answered our questions and ended with "thank you for letting me take care of your boy." An even bigger 'thank you' for taking such good care of him!

Logan had a general anesthetic and a local anesthetic (caudal block). The caudal block wore off about 6 hours after surgery. Despite the advil and tylenol that he had been given, he was in intense pain. He was screaming, kicking his legs and arching his back. We gave him a dose of morphine and helplessly waited for it to kick in. I held him, but was afraid that I was hurting him. I lay next to him on the bed. Tried desperately to nurse him for comfort. Eventually, he was given some relief from the morphine and fell asleep. He was unsettled though. I lay with him for a while. After an unsettled hour or so of sleep, he woke again, screaming in pain. We were not able to give him anymore pain killers, so I tried to soothe him in any way I could. I then opened the diaper to find that it was full of blood. Jenn and I were both startled and shocked. We carefully changed him and then decided to rush him back to the hospital. I rushed him to the ER and Jenn waited for my brother to come to our house to stay with the girls before coming down to join us.

The ER was packed. Given our reason for being there, Logan was rushed past everyone waiting for the triage nurses and immediately given a room. Fortunately, the bleeding had stopped, but we couldn't figure out what had caused it. After seeing the doctors and speaking with urology, they decided to run some blood work to confirm that he didn't have a blood disorder. The results came back clear and he seemed to be more comfortable. In the early morning hours, we headed home.

Logan came home with a stent (catheter) in. It is being removed 8 days after surgery. That's been the most interesting part of caring for him so far. He is double diapered. The catheter drains into the outer diaper because it is important that it stays clean. For the first several days, he needed to soak in warm water four times per day to help the bandage fall off on its own. After he poops, I gently hose him down in the sink (because he can't be wiped), then let him soak, air dry and finally put on his two diapers. It's a process that can take up to 30 minutes.

Late last week, I discovered that his catheter was full of blood. When I was unable to get a hold of the Sick Kids nurse, I called my aunt, who just happens to be a urology nurse. She was completely calm and told me to get him to drink to see if the blood flushes through. Thank God for her! I was ready to rush back to the hospital. Fortunately, the Sick Kids nurse called me a short while later and said that a small amount of blood is normal, given the trauma that his body has been through, but a blood soaked diaper (like the first night) is not. After some water and breast milk, the blood flushed through. After that scare, I made sure to keep him well hydrated, which means that he's been sleeping with me and nursing like a newborn. His comfort has been my priority for the last week, so I'll deal with the sleep regression later!

In addition to the pain killers, I started him on a homeopathic remedy, arnica, on the day before surgery. Arnica helps with pain, swelling and bruising and can expedite the healing process and the removal of the anesthetics from his system. We were told that day 2 would be far worse for Logan, but as it turns out, the swelling had significantly reduced and he was in good spirits. I do attribute some of this to the arnica.  

Kids are amazingly resilient. Jenn and I are both grateful that we dealt with this now. As a baby, he won't remember it and I would imagine that the healing process is easier and quicker that it would be with a toddler or an older child. We are also grateful that his birth defect was easily corrected and shouldn't cause him any more issues in the future.

9, 10 and 11 Months Old!

Eeeep! Sorry Logan. Just like that you're nearly 1. This kid is such a bright light in all of our lives. Happy belated 9, 10 and 11 months little dude :)

November 10th, 2016

December 10th, 2016

January 10th, 2017

• He's everywhere! He's been on the move for months now. He is a speedy little crawler and an expert cruiser. He loves using his walker as well. He gets around so well, so it will be interesting to see when he chooses to walk. He's extremely determined and will take risks (ie. climbing over stools/boxes, through tunnels, into laundry bins!) in order to explore something that he finds interesting. He never stops moving. Even when he's sitting on a lap, his legs are kicking away. Diaper changes cause me to break a sweat, as I try to distract him or hold him down and get the diaper on at the same time. He's strong and very solidly built. 

•  At this point, he has tried everything in the food department. I generally stick to nutrient dense fruit, veggies, legumes, meat and nuts/seeds. He has had some cow's dairy (grass-fed plain yogurt) and goat and sheep's dairy (yogurt and goat cheese), but as a household, we limit cow's dairy products. He loves almond butter and has tried peanut butter numerous times. I add grass fed butter or coconut oil to his food (the fat helps his body assimilate protein and absorb vitamins and minerals). He seems to like almost everything he tries and still prefers foods that are less sweet. I usually spice up his food quite a bit -- he loves curried lentils (mild curry powder, garlic, turmeric, onions and other veggies). I'm breastfeeding on demand, so it's tough to say how often or how much he is drinking. He absolutely loves his milk and still seems to prefer it over solids. Being #3 and not having time to worry about it, I'm just taking his lead with food. Stress-free for all of us! 

• He's a chatterbox! He babbles and talks to us constantly. When he sees or hears me, he will now say "mamamama". He will point to Teagan, Quinn, the dogs, my Dad (Grandpa), my mom (Atty) and Jenn and I when asked. He also says "da" for the dogs and will point out dogs in a book. He shakes his head 'no', but at this point, he seems to do it because he loves the reaction that he gets from others. The girls tend to be quite loud with him (which he loves), so he frequently shrieks and (happily) screams. He does understand some simple commands (ie. "come here"), but clearly chooses to ignore it when he is doing something more fun! He will often wave to someone when I say, "say hi to __".  He will also wave and point to things that interest or excite him. Given his hearing loss, language acquisition is on our radar and frequently discussed. At this point, he is hitting all of his milestones. 

• He usually gets upset when I come home because he realizes that I've been gone. He has started to develop separation anxiety when I'm around as well. He will often cry when he is passed over to someone he doesn't know or when he's tired and wants me. He is left with our babysitter twice per week for a couple hours when I take the girls to their hockey and swimming class, but is comfortable with her now.  

• Sleep, or lack thereof, is the reason that I haven't been writing. I've decided that he is just a sh*tty sleeper. We have tried it all. He's a good-sized baby (20lbs) so he should easily be able to sleep for 12 hours without a feed. I do still feed him when he wakes at about 3/4am. There is no consistency to his night wakings, despite a consistent bedtime and nap routine. Some nights he will wake just once around 3am and then again for the day between 5:30-6am. On many other nights, he will wake 2-4x between 8pm-4am. I do not feed him in the late evening hours and we only go in to briefly soothe him if he is hysterically crying (otherwise, we let him settle himself). The sleep deprivation is depressing quite honestly. He is a happy and healthy baby and there really isn't a reason for the wakings. 

• The testing to determine his candidacy for a cochlear implant is nearly complete. After his MRI, we will need to make a decision. He has a hearing aid that he never wears. It frequently fell off, got pulled off or got eaten. His hearing loss is also so severe that the aid is likely not helping very much. He is essentially deaf in his left ear. It is clear to me that he has trouble localizing sound, but other than that, you would never be able to tell that he can't hear out of one ear. 

• He has surgery scheduled next week to repair his hypospadias. The surgery will take about 2 hours. They will need to reconstruct his urethra with his own tissues and move the hole of his pen!s to the correct spot. I'm feeling anxious about it, but know that he is in very good hands at Sick Kids. I had a call with the pre-anesthesia nurse this week, who explained our options for putting him under. I will be happy once it is finished and Logan is on the mend. 

He is happiest when he is playing
with these two :)

He loves pure veggie juices -- I have to
fight him for my green juice!

Excited to take Christmas photos!

Brunch with Grandpa

Face off with Riley and his smelly licks

Milk coma -- I will enjoy them for as long as I can

One of his favourite places is in our
front window

Nap? No nap.

Waiting for Santa on Christmas Eve

Christmas photos with my amazing friend and photographer,
Lauren.

Crawling through his present from Santa!

Christmas Day with his cousin

Planes, trains and automobiles...prepping
for Florida.

This is how Logie went through
US Immigration

We are happy to be in Florida!

Getting ready to board the Disney cruise ship

Sailing away!

Water baby in the Bahamas!

Final night of the cruise

He figured this one out on his own

Sumo squats with Atty