April 12, 2013...the morning that changed our lives forever

The first two weeks of April that year were a whirlwind. On April 3rd, 2013, I received the wonderful news that I was negative for the gene that was responsible for Long QT Syndrome (What is it?), a severe electrical heart condition that my oldest sister was diagnosed with at age 18 after a sudden cardiac arrest. She is here with us and I know no one was happier than her to find out that our entire family (my Mom, 1 sister, 1 brother, 1 niece, and 1 nephew) all tested negative for the gene. This, unfortunately, meant that my Dad had to have had it and never knew. He died suddenly of heart attack in 2011.

April continued with Nathan waking up shrieking every morning before 4 am. We were doing everything we could possibly think of to keep him calm and comfortable to sleep to no avail: room darkening shades, different types of night lights, sound machine, radio, fan, none of it was working. He would wake at different hours of the night, but was up for the day around 4 am. Once he was up and walking around, he was a happy kid for the most part. That initial wake up, though, that was tough. We were getting anxious at the thought of April 12 coming. The dreaded MRI. Nothing could be wrong, right?  My nephews had larger heads, we knew of another child whose head measured larger, and I myself had a larger head! We were still hoping for the best.

On April 10, Benjamin got pink eye. Ugh! That's no fun! He was nice enough to pass it along to Nathan the next day. We started to worry as we didn't want to have to delay the MRI; we could not handle having to wait any longer than we did. We would learn later on this journey that having to wait less than 3 weeks for an MRI wasn't so bad.

Poor Ben and his pink eye

Nate's pink eye looked much worse

April 12th arrived and Stephen and I packed Nathan into the car to head to BayState in Springfield for an MRI. We were incredibly nervous; so much so that we initially went into the wrong building! (I went to college in Springfield so this should not have happened!) Once we got there, we spoke with the anesthesiologist briefly about his symptoms: large head circumference. He asked about Nate's vomiting (which there was none) and his ability to walk (which seemed typical for an almost 19 month old).

I don't normally take pictures of medical appointments. For some reason, I was compelled to take this right before they came in to begin the IV process to sedate him. This procedure did not go smoothly.

Based on our answers, he seemed to think we'd only be there an hour. Because he was so small and had to lay still for such a long period of time, he had to be sedated for the MRI. We were allowed to actually sit in the MRI room and watched Nate as he laid there peacefully. At one point, while attempting to stay distracted and flipping through a People magazine, I actually said to Stephen, "This is so hard. I don't know how some parents have to do this all the time." Wow...how naive was I?

While Nate was still sedated, the anesthesiologist came into the room to tell us that he had severe hydrocephalus (What is it?). He said that he would need emergency surgery, but they were going to back into the MRI to use contrast to find out what was causing the hydrocephalus. Once that was completed, I was able to hold Nate while he was still sedated. Hearing that he had hydrocephalus actually didn't scare me and for some reason, I didn't even think twice about it. My nephew had it and had to have several surgeries to correct it. So, in my head, I thought, "Okay, we can handle that, no problem." Two minutes later, the anesthesiologist came back in the room, except this time, he had another doctor with him. Stephen and I looked at each other and we both felt like we were going to throw up. The doctor looked at me and said, "Your son has a brain tumor." Six words that would change our lives forever. Six words that would change our lives in many more ways than we would've ever expected. This would be the first time I would ever see my husband cry. I sat there, holding Nathan, thinking there was no way we could lose him. No way. The doctors were kind enough to let us have some time with him before taking him back to complete the MRI. The rest was a blur. All I know is that they were prepping him for surgery and we had phone calls to make. How the hell were we supposed to tell our family this news over the phone? I will never forget these moments.

Stephen called his Mom first. She was watching Benjamin and Stephen just blurted it out. She said would drop Ben off at our cousin's house and head down. Then he called his older brother, Tom. I could hear him upset on the other end of the phone and could feel his pain. I decided to go into the nurse's office to call my sister.  Just 9 short months earlier, I had to call my sister to tell her that our Dad passed away suddenly and here I was having to call her again with horrific news. I had to call her first; I couldn't bear to call my Mom to tell her first. She had already been through enough with the four of us and now, she had to hear this news over the phone about her youngest grandson??   Thankfully, my Mom and niece were already with my sister, anxiously awaiting a phone call from me. They were expecting hear good news, I mean, he had no visible symptoms! I only had to say the words once: Nate was going in for emergency surgery to relieve the pressure on his brain and that our little baby had a brain tumor. Thinking back to this moment still takes my breath away. We were paralyzed in time. As we walked to where he would be operated on, so many thoughts went through our minds. We knew that news would travel fast, but we didn't realize how fast.

March 2013, our last "sane" month

In March 2013, we went back to our place in Florida. We were excited this time because Auntie Kim was going to join us for a few days from Baltimore. I (Amy) had given her several warnings that it may not be a relaxing vacation for her, but she still wanted to come. Stubborn girl had no idea what she was in for! :) 

Neither of the boys had been sleeping well and Nate had a rash on and off for the previous week that was progressively getting worse.  The good news was that Ben had decided that he was ready to be potty trained and on week 2 of being successful. While in Florida, we were able to enjoy our time by the pool, at the playground, and we spent some time at a local children's museum, which the boys have grown to absolutely love. Several times during the trip, Kim looked at me and wondered how the hell I did this day in and day out. It's only when people are with you 24 hours a day that they realize what your life is truly like. It was then that she realized how intense Nate was and how demanding of my time he was. He had no problem showing how much he needed his Mommy and that he DID NOT like when I had to leave the room. So, not only was he up with the birds every morning, he basically tried crawling back inside me every chance he got. We were so used to his behavior that we didn't think twice about it. When someone who's not around us all the time mentions how difficult he is, it makes you think twice.

Ben with Auntie Kim (Nate was in no mood!)

Our traditional family picture in Florida

After we returned from Florida, we decided to follow our pediatrician's advice of taking away the binky. He wanted us to do it after Nate's 15 month appointment, but we chose to wait until after March's flight to Florida. It wasn't something we were ready for and we quickly realized that Nate was not ready for it either. We didn't know what to expect because Ben never used a pacifier, but the trauma that Nate experienced was heartbreaking. In the following months, we would learn why. 

The boys and I at an Easter egg hunt

the boys on Easter

On March 27, Nathan had his 18 month well check with our pediatrician. I typically went to these appointments myself. I love our pediatrician; he has always listened to me and I trust him implicitly, but I was still a little nervous to tell him that we attempted to rid Nate of the binky for 8 days because I knew how strongly he felt about it, but we just couldn't do it anymore. The screaming that came from Nathan for those 8 days were traumatic for everyone that lived in our house. Looking back, it still haunts me. The nurse came in to do the measurements; everything looked good for his height and weight. As she began to measure his head, I saw the look on her face. She looked back at the chart and measured his head again. And again. I knew something was up. Now, if you don't know Nathan's past at the doctor's office, it was one of the most terrifying places for him to be. He's already a highly anxious little boy, but the doctor's office put him in a tailspin. So try to picture me attempting to keep him calm while the nurse continues to try to get an accurate measurement of his head.

After the third or fourth attempt, she leaves the room. The doctor comes in and sits down to chat about how things are going. I explain the binky process, Nate's inability to remain calm, his huge emotional meltdowns, and his continued poor sleep. I was also concerned that he's been sick for so long; between ear infections, sinus infections, and lack of sleep, he simply was unhealthy. The doctor does a normal exam and then begins asking me about his walking and whether or not he falls a lot or stumbles around. What?? Nate's 18 months old...what 18 month old doesn't stumble around? Isn't that why they call it the "toddler" stage? In my head, I started to worry, but the doctor still remained calm. Then, he asked about whether or not Nate was vomiting. My answer to that was, "No." He threw up as a newborn and then again as an infant, but after that, he always kept food down.

The doctor stood up and began to measure Nate's head again. He did this 3 more times. I saw the concern in his face and I could feel the tremble in my throat and I just said to myself, "Don't cry, don't cry, don't cry." He leaves the room for a minute and then returns. He sits down and tells me that the circumference of Nate's head has grown by almost 3 centimeters; too much too soon in 3 months. And that with all of my concerns with him at home, he thinks it would be best to schedule an MRI to rule out anything going on in his head. This MRI would have to be done at another hospital because he would need to be sedated because of his age. But, before this could happen, he wanted Nate to have an X-Ray done of his face, throat and neck area to rule out anything going on with his sinuses and adenoids. This alone terrified me because I knew how difficult it would be to get him to sit still for this exam. We headed downstairs and began the hysteria. I had to sit with him and held him with the strength of a straight-jacket to get him to sit still. I knew they weren't going to get good pictures and this was just a waste of time. We headed back upstairs and I attempted to hold my composure as we walked back into the office. The doctor explained that the pictures weren't great because of Nate being so uncooperative, but that they didn't see anything of major concern. Step 1 done. I was told that someone from their office would call me with the date of the MRI. Now, I had to leave and call Stephen to tell him the news. 

Sleep interrupted...

Our sleep woes continued through the early part of 2013. Nathan was on his third round of antibiotics; the first for an ear infection that we didn't even know he had, but found out at his 15th month well visit. The second was for a sinus infection. Yeah, who know kids so young got sinus infections? He got his first one at 4 months old so this wasn't new to us. And, now, on his third round because the first two didn't do their job. 

At this point, we were ready to just give up on the sleep situation and just accept it; as hard as that was. We could count on one hand how many times Nate slept past 6 am in 16 months! And, we could count on two hands how many times he slept past 5 am. On most days, he was up at 4 for the day and that's not counting the times he was up in the middle of the night. Those days were so difficult. 

You don't ever realize how truly important sleep is until you're not getting enough of it! I (Amy) know what it's like to feel exhausted and beyond fatigue. If you've ever had a thyroid issue, you know what I'm talking about. Benjamin started sleeping through the night at 3 weeks old. We knew we were incredibly lucky with him, but we didn't realize how lucky until we had Nathan, the non-sleeper! Within 3 months after giving birth to Benjamin, I knew there something wrong with my body because the fatigue, even with 8 hours of sleep at night, was ridiculous. After a visit with my doctor, I quickly learned my thyroid was out of whack. After 2 days of medication, I felt like a new woman. I've been on it ever since and can absolutely tell the difference if I forget to take it. Being tired because of forgetting your thyroid medication and being exhausted from a non-sleeping child are two totally different things. I'm sure some of you can relate; not that we would wish it on anyone.

Lack of sleep can affect your entire life: your days, your nights, your marriage, your friendships, everything. As a couple, we always do our best to keep our lines of communication open, but true exhaustion really puts relationships to the test, including those we have with our children. I will never forget a piece of advice my doctor gave me during a routine thyroid check: always try to get at least 4 hours STRAIGHT of sleep at night. This is how long it takes your body to recover. Obviously, 8 hours would be ideal, but we're not that lucky!

Ben & Stephen doing "Cheers" with cupcakes!

I think I'm exhausted...

Welcome to 2013!

January can be a tough month in the Berkshires, especially when you have a 16 month old that flat-out refuses to wear any sort of winter gear! It certainly makes for long days inside and very short stints outside! We make the most of our Sundays watching football and the occasional bowling tournament (big surprise, right?).

the boys watching the Patriots

 We filled our days with playdates with our friends, gymnastics class for Ben (Nate wasn't quite old enough yet, not that we thought he could handle it anyway), weekly playgroup for Nate while Ben was at school, and just playing around the house. It was always a little tough to get out of the house, not because we had 2 kids under 3, but because we never knew what were going to get with Nathan. His personality and temperament were incredibly unpredictable. He was unlike any other 16 month we knew. He cried often and was extremely anxious around other people. It took a lot of work to settle him down and it was simply tiring, especially after not sleeping!

A little indoor fun for Ben

Ben at gymnastics

We had his 15 month well visit in December 2012 and we spoke of all our concerns. Our doctor listened, but seemed stumped. He knew we were frustrated as I (Amy) was at the brink of tears at every visit. We basically came to the conclusion that "it was just his personality." Now if that doesn't make a parent feel helpless, we're not sure what does! Because Nathan was eating and growing normally, there wasn't much to discuss. Outside of his sleep issues (he was continuing to wake multiple times during the night and was basically up for the day around 3:30 am), he didn't have any other major symptoms. We should note that at that visit, his measurements for his height and weight hovered around the 50th percentile while his head circumference was above the 95th percentile. We never really thought twice about it since big heads run in the family and those were his numbers all along.

The rest of 2012

The last 4 months of 2012 were actually somewhat quiet in the Sykes' household; well, whatever quiet means!  After celebrating Nathan's first birthday, the rest of September brought Benjamin's first day of pre-school. I had to miss bringing him in since Nathan decided to fall face first into the tile floor. I took emergency room duties and Stephen took Ben to school. I was certainly disappointed, but Benjamin did quite well. Luckily, Nate didn't need any stitches, but man, that mouth can bleed! After that, Ben started calling him, "Trouble." He thought it was funny to say, "Here comes trouble!"

Ben on his 1st of day of pre-school

the 4 of us after apple picking

There goes "Trouble!"

Trouble's probably a pretty good nickname!

Nate's baptism

The track star and his Coach!

 We celebrated Nate's baptism with both of our families in October. For Halloween, Nate dressed up as a track star and Ben was his "coach." Ben was adamant about not trick or treating; he's definitely the more cautious one of the two!

Ben loves that pool!

We went back to Florida in November. Nate still wasn't a fan of the water, but we enjoyed spending some days at the zoo, Sea World, and the beach. It's always nice to be able to get a week's worth of sun in before the long Berkshires winter! We certainly don't take that for granted!

Poor Nate!

 December brought Benjamin's 3rd birthday and another set of holidays for our family to celebrate. We, along with the rest of our country, mourned those who lost their lives in the Newtown tragedy. As a former teacher, it really hit home for me. It just made me hug the boys a little tighter and treasure all the moments I am able to have with them as a stay at home mom. Not everyone is that lucky.

Ben opening a gift on his 3rd birthday

And, in case you're keeping track...Nathan still isn't sleeping through the night at this point; or what we would consider sleeping through the night! Most mornings, he was up between 3 am and 4 am ready for the day, with a couple (and I mean 2!) mornings of 6:15 sprinkled in there. He would wake up screaming, but once he was up and walking around, he seemed fine. We would still take him to cranio-sacral therapy once a month, but nothing was changing in terms of his waking time.

Nathan turns 1!

As we got ourselves through the rest of July, we decided to take a little vacation to York Beach, Maine. It would be Nate's first time seeing the ocean and we knew it would be good for Benjamin as he loves the beach! Plus, we were going with a few other families and Ben would get a chance to play and run around.  With the sadness still lingering from the sudden passing of my Dad, I knew it would be good to get away.

But, first came some unexpected news. We received a phone call from the caretaker of our property in Florida. Our condo was flooded and it had been "raining" in our place for at least four days. Awesome, just what we needed to hear. Well, long story short, our upstairs neighbors' toilet began leaking and it had nowhere to go but down, for who knows how long. We ended up having to completely renovate (including furniture) one bedroom and one bathroom from top to bottom, a portion of a hallway and another bathroom. All in all, a $30,000+ mistake on our neighbors' part. Thank God for insurance, but difficult to manage from 1,300 miles away. This ended up being an ongoing issue until November 2012.

Nate loving the ocean!

But, there was absolutely nothing we could do and 
we had to leave it in our caretaker's hands. We 
continued on to the beach and enjoyed every 
minute. We laughed and made some wonderful 
memories. The boys loved the sand and playing in 
the water. Nathan wasn't quite walking yet so it was still somewhat easy to manage both of them!

Nate enjoying the beach.

Benjamin doing some bowling on the beach.

When we got home from the beach, it was time to plan Nate's first birthday party! We were excited and knew we had a lot to celebrate. There were so many tears that first year. We were finally getting to a point where there were more smiles! We celebrated with a BBQ and both sides of our family came. Despite the threat of a tornado which turned into an incredible rainstorm, we didn't care; we had so much to celebrate! 

Nate's "Alvin & the Chipmunk" cupcakes (courtesy of Auntie Marie)

The storm coming over the mountain!

Nate's first taste of cake.

Nate finally opening gifts, a day later! (someone fell asleep at his party!)

Our lives turned upside down, for the first time...

The summer of 2012 started off well! We decided to attempt potty training with Benjamin, who at the time was 2 1/2 years old. Ben is the complete opposite of Nate. He is quiet and cautious. Smart, but not outgoing.  He seemed to be okay with going, but with some practice. June came and went. Nathan turned 9 months old; got two more teeth, said his first word, "Clap, clap," and actually climbed up the stairs alone! We weren't ready for that!  He was continuing to sleep poorly, but the crying during the day seemed to slow down. The boys were enjoying playing outside; especially at the water table.

Benjamin doing his business on the potty!

Ben teaching his little brother the ropes.

The boys loving the water table from Pepere!

July started off with a bang, literally. We hosted the annual 4th of July Sykes family picnic for the first time; taking it over from Stephen's parents. It was a great time spent with family and friends. We spent most of our time outdoors in July; going to the Pittsfield State Forest for picnics, Whitney's to play and feed the animals, and Nathan even enjoyed his first James Taylor concert at Tanglewood.

Our family of 4 watching the parade

Ben sharing his snack at the lake

Nate having fun at Tanglewood

Nathan was even able to travel with me to Baltimore for a bowling tournament. He did great on both flights and thanks to some dear friends, was well taken care of while I bowled. I was really nervous to leave him because I know how upset he would get when I left him at home, but he did so well! I was so happy and proud of him.

Once I had kids, my Dad came up to our house as much as he could, even if he could only stay for an hour or so (we live just under 2 hours from my family in Connecticut). The weeks that he couldn't come up, I would try to get down to the lanes so he could see the boys. I received a phone call on July 25th that my Dad was found not breathing behind the lanes (he owned a bowling alley in CT). He was rushed to the hospital, but did not survive the heart attack. He passed away that day and my life was changed forever. I wasn't able to say goodbye. My boys would grow up not knowing their Pepere.

My Dad reading to Ben (21 months) and Nate (2 weeks old)

The last picture I have of my Dad with Nate

I saw him on July 21st and gave him what ended up being my last hug behind the lanes, the very place he died. I never thought that would be the last time I would see him.

You don't ever really realize how much you truly NEED your parents until major life events happen. I would certainly learn this in the coming months.

And the rollercoaster continues...

Our lives continued to be so unpredictable that April and May.  Nathan continued to wake often during the night, even after he passed the 7 month mark. We were incredibly sleep deprived.  At this point, he was even having difficulty falling asleep. This was our one highlight of the night. He was also continuing to fail to switch to a bottle. This was another one of the obstacles of him as a baby. Amy was breastfeeding from the start; we attempted bottles around the 4 week mark and continued to no avail for about a month. Every few feedings, we'd try again, but again, without success. This kid is stubborn! He was eating solid foods without issue, so that's a positive!  During the middle of the month, Nathan was put on an antibiotic after struggling to shake a cough that persisted for several weeks. Funny thing was he never coughed at night. 
 

Enjoying the outdoors at Easter

On April 25th, we started "sleep training" after putting Nate down for the night. You know, if he's crying, you go in at a set time to let him know you're there and then walk out? Seemed simple enough; we were already used to listening to him cry. After about an hour and a half, he fell asleep and stayed sleeping until 5:30. Success! The second night, after about 45 minutes, he fell asleep and slept until 5:30. Success! We were excited! Our success was short-lived as a night 3, he fell asleep without an issue, but then was up screaming from 12:45-2:45. Not too horrible. Night 4: back to sleeping through the night!  Maybe we were onto something!!

The boys playing together

We passed the 8 month mark without issue. Nathan was making gains developmentally. He scooted back into a sitting position right after the 6th, pulled himself up on the 10th, waved bye-bye on the 18th, crawled on the 20th, and fed himself on the 21st. What a busy month!! He was even able to sit through a car ride with me and my Mom to watch me bowl in Hagerstown and had a fabulous weekend!  Despite going back to his old sleeping schedule toward the end of the month, we were putting May in the books on the success side!

Someone is very proud of himself!

And the kid is standing!