Recently, our family was selected to be featured for the University Hospitals Kingston Foundation and the upcoming 20th Annual Kids for Kids Hockey Tournament which raises money for the Pediatrics unit.
It brought back a lot of memories and is a reminder again of how fortunate and blessed we have been.
I know I haven't posted a blog in a few years and I promise to give a more thorough update soon. Thank you for following along Lochlan's journey. It is my hope that through our story, if you are going through something similar you will find some hope and encouragement. And even if you are not, you will recognize that anything is possible.
It was such an awesome summer! Lots of fun was had and lots of growth and development occurred.
I think Lochlan grew the most he ever has over the last few months than he did in the entire year. He is now 41.8 inches tall and weighs just over 36 pounds...still 3 + pounds to go before he can start sitting in a booster seat. I feel like he's been in his car seat forever....
You know he's beyond ready to move to a booster when he's doing things like this!
Spiderloch!
This summer, we went on a family vacation to Niagara Falls. Such fun! The kids and Rob and I really loved camping at the KOA. Highly recommend the KOAs. Fun for everyone. We stayed in a cabin so not roughing it for sure. We also did some touristy stuff --- went up in the SkyWheel and played Dinosaur mini golf, and a few other activities. We even went to a Buffalo Sabres development camp exhibition game between their top prospects including Jack Eichel and Sam Reinhart. It was electric!! It wasn't just Rob that loved it, the kids and I did too. They can't wait to go back and get their Sabres t-shirts! (The souvenir shops were closed) Abby even lost a tooth at the game! Very memorable indeed.
YAY for KOA!
Loved the porch swing
Our cabin
Mommy and Abby
Loch & Daddy
Scary ghost stories...oooooh!
Ready for the Sabres!!!
We also went on another camping trip to Gatineau, Quebec with friends in August. It was really beautiful and while completely different from our earlier camping adventures, it was equally wonderful. We actually bought a tent trailer (shout out to my Uncle Roy who did an AMAZING job fixing up the trailer -- he redid/replaced everything. It looks brand new!) With getting the trailer, we are really looking forward to many more camping excursions in the future. Every year we plan to travel somewhere new. Although we really would like to go back to Niagara Falls next year too!
Can't say this guy has no personality!
Hey there!
Lochlan learned to swim without his puddle jumper this summer. It was actually quite funny. Unsafe, but funny because he could touch. Our nephew was over and had jumped into the pool. Loch was so excited, he went down the ladder and right in the pool. And went under. Came back up immediately cause he could touch - I said, did you forget you didn't have your puddle jumper on? He nodded his head yes. We put it on him for a bit but then I told him he was going to practice swimming without having it on. He was hesitant at first but did awesome. The very next day, he started swimming around without it. By the end of the summer, he was able to swim in the deep end even! Such a rock star!
Unfortunately on Canada Day, Lochlan fell and hit his eyebrow on a rock leading down from our pool deck and split it open. It required 4 stitches. Not surprisingly, he took it like a champ.
Loch started senior kindergarten this fall. He is well ahead of where he is "supposed" to be. He is reading really well. At the end of senior kindergarten, kids should be at a level 4 or 5 PM Benchmark for reading. Lochlan is already at 7/8. His sister Abby has always been a strong reader as well. She is well beyond her levels in reading for grade 2. We just love to read. Rob and I have always read with the kids even when they were a few weeks old. It became part of their evening routine - actually I think we read with them before they had their naps as well. It was a great way to settle in, and also to spend some quality time together. Still to this day, we read with them. Sometimes they will read to us, sometimes we'll read to them, and sometimes we do both. And, we still love it. The kids get really upset if they miss their story time for whatever reason --- late night, or due to a consequence...I'm talkin' tears here. The routine and the love of reading we have, I know has really made a difference in their literacy and school work.
First day of school 2015
Lochlan started hockey in September. That meant finding some ice time over the summer. We had him out a few times leading up to his evaluations. He went from shuffling and falling down, to bull skating (skating with one foot) to the day of his tryout skating on both skates. He is so awesome! I can't wait to see how much further he progresses over the season. Just blows my mind!
Daddy the teacher
Lochlan and daddy first official Team Green practice
Sibling love and support
Lochlan also learned how to ride his bike without training wheels recently. It was a very quick transition actually. Both Abby and him were out riding bikes - Lochlan's training wheels had been off for a while but he still couldn't ride it properly) I noticed his tires were pretty flat. Our neighbour pumped up his tires (Thanks Jim!) Lochlan hopped on his bike, and immediately started riding it. I was like "what????" Super proud and super shocked! But with him, anything is possible!
Loch recently had a check up recently with Dr. Flavin. (his lung doctor) Only thing really to report is he's back on his puffer (Alvesco) over the next few months to ward off colds settling into his lungs since that has been a big issue in the last 5 years and him having to be hospitalized. But the doctor did say, if none of his colds settle in his lungs, we can take him off of the Alvesco. I'm not sure if I'll be brave enough to try over the winter. It's very scary to me. I really don't want him to get some nasty virus and having it go deep in his lungs and then needing oxygen support. Ugh. I would deal, but it wouldn't come without worry for sure. So we'll see. The other thing is, we noticed when Lochlan played soccer in the summer, he would often get tired or give up. Sometimes, he'd come off the field and say he was exhausted. We are to give him Ventolin now before any sports to see if it makes a difference.
Soccer comes to a close
And it does. We forgot last week to give him his puffer before hockey, and he couldn't keep up. He was really tired. I'm super pumped to see him in his first game. It's not until December but man, it's going to make me beam with pride.(I already do just seeing him at his practice so I can imagine I my cheeks will hurt come December) Abigail is playing hockey too which is awesome to see. She only decided to play mid-summer. All along she said she was going to do figure skating, then changed her mind. So we switched her skates and she is starting to really get the hang of it now. Again, the progression at this age is amazing. Both Abby and Loch have always loved watching their cousins play hockey, now they get to join in the fun! Another fun thing is that Abby has a lot of 7am ice times. Yay. But actually it's not that bad. We are starting to get into a routine. I'm a morning person anyway so it doesn't bother me that much. And knowing how much our kids love it, is definitely worth getting up so early.
We are gearing up for Halloween. Lochlan has decided he is going to be a Storm Trooper from Star Wars. Rob introduced the kids to Star Wars this year and they've really gotten into it. Abby is going to be a Power Ranger. Good 'ol Netflix. Actually Abby has started Karate this year at school. I bet seeing a few episodes of Power Rangers and doing some of my Jillian Michaels Kickboxing workouts inspired her to take it. Speaking of working out, Loch wanted to do a workout the other day. Man was it cute! I finished my workout and he asked if he could do one too. I said yes (of course!) He chose Jillian Michaels' Yoga workout. Proud momma.
Our lil yogi!
I am excited about what the rest of the year will bring. Other years I've been nervous with the cold and flu season. As he gets older, I'm not so nervous. I've always tried to not let anything hinder what we do, but this year especially, I just want to live and enjoy life with our family. Lochlan is absolutely the most amazing boy you'd ever meet. I feel so blessed to be his mom and to be on this journey with him.
Happy birthday Lochlan! 5 years old! What an awesome time we had celebrating him. He is so incredibly kind, thoughtful, funny, joyful and loving. Last week he told me that his heart is full of love. And it is. It so is.
These days he is into Mario. We try to do a family game night every Friday night. (because otherwise the kids would drive us crazy asking to play the Wii pretty much every day!! But it also gives us a regular night committed for family time.) He had his Mario themed party on Saturday. Lots of friends over to celebrate. It was a beautiful day so we spent some time outside enjoying it. But we also did games such as Mario musical coins (musical chairs but they had to grab yellow plates when the Mario theme song stopped), Mario says (simon says), and a few other games as well. Then everyone wanted to play actual Mario Wii games so they teamed up and took turns doing that for a bit. The cake was amazing! Wish I could say I did it myself but, negative. Thank you Metro!! It was a fun and crazy day. Because Lochlan's birthday is also Cinco de Mayo, his aunties and cousins came over in the evening with a Mexican fiesta! And that's also where Lochlan received a pretty sweet present: his very own MarioKart!!! So cool.
I feel like as the years go by, I start to focus more on just celebrating him and all the wonderful qualities he has and less on the memories of his actual birth and the challenging and scary times surrounding it. Perhaps it is because I have tried to always focus on the positive. But it helps when he is just so excited for his birthday. To him, it doesn't mean anything scary. It's just a special day. It's all about the love we have for him. (and cake....and presents....)
So blessed and thankful.
xo
Jenn
Side note:
I want to share a lovely story with you. A few weeks ago I had the flu. While putting Lochlan to bed as I was laying with him he started making little crosses on me. On my forehead, my heart ....he said "peace" then he made them on my legs, my arms, my tummy...He said "mommy, I'm putting crosses on you to help you get better!"
Amazing right? So sweet and it really moved me.
The next day, he came running into our bedroom and said "Mom, did it work? Are you all better?" Believe it or not, my fever had finally broke in the night! I said "it worked! You did it buddy!" He was beaming. I asked him how he knew to do that. His response?
When I pProm'd I wanted time to speed up....to get me further into my pregnancy so that our baby would have a better chance at survival. Yet, it felt like it was taking forever.
When Lochlan was finally born, time stood still. Every day was full of worry - worry about oxygen levels, worry about brain bleeds, worry about infections, worry about ounces and calories and whether he had pooped or peed. Worry if he would survive, worry about his future and what that would look like. It seemed that time was slowly ticking and that we'd never get home.
Lochlan spent 3 months, 11 days in the hospital.
He is now almost 5. What? Time it seems now, is on fast forward. He is well into his first year of kindergarten. The first few weeks were quite an adjustment. He was exhausted. But most kids are when they first start school. He was super excited that first day, but the second day, did not want to go back. (and the third, and the fourth....) It wasn't like his pre-school program he did in the summer. And there was an overwhelming number of kids in his class. He eventually started to like school...he made some friends. But he still asks to stay home some days. He asks, but isn't granted that request!
Rob and I met with his teacher recently, she said he is at the top of the class academically. (and that includes the seniors) Super proud of him. I found myself beaming as she talked about his accomplishments. Who knew this 1 lb, 12 oz very sick boy, would defy a lot of the odds.
Her only concern is that when he is a senior, he won't be challenged enough. That's ok. We will challenge him. We will continue to work with him on his reading and his math skills and everything else. While that's what school is for, it's also what parenting is about. To help your child strive to do their best and to reach and exceed their potential.
We decided to not tell Lochlan's teachers that he was born 15 weeks early and how extremely sick he was. We didn't feel (and still don't) that it has any reason of why he could or wouldn't be able to do things at school. It does not define him. If there are struggles, we will deal with and make a plan if they come up. But to come out and say, oh, he was born at 25 weeks seems/seemed pointless other than for extra praise or sympathy. We realize how fortunate we are/ he is. Sometimes I feel a sense of survivors guilt. Why did we get lucky where there are no lasting issues at this point in time?
I don't know. We just did.
I created this blog as a way to document Lochlan's journey, but also my own. To get my thoughts and feelings out about the scariness of it all - the unknown. To help me cope. But I also created it to offer hope to others who are going through a similar situation. No one can predict the future or how prematurity will affect their child. What we can do is offer hope to one another, offer encouragement, offer support, and offer our prayers. Even if it's just a "you got this!"
Cause you do.
xo
Lochlan & Abby with the 'Balloon Friends' they made
It's never ceases to amaze me how fast time goes by. Abby is getting ready to go into senior kindergarten and Lochlan is one year away from starting school. During the past few months, I joined a few support groups for preemie and micro preemies to offer my support for those that are starting out on this emotional, crazy journey. I continue to be reminded just how far Lochlan has come and all that we went through. Not that I forget, but I don't let that define him. I never have. He has proven time and time again his super strength and determination.
These days, Lochlan is a happy, healthy three year old that has surprised so many with what he can do. Not me. He is such a joy to be around. He has the best personality - he's funny, polite, loving, energetic, cute, happy, and just full of life. He also is very particular about his clothes, doesn't like to sleep with a blanket or a sheet on, sticks up for himself when his sister tries to boss him around, loves trucks, tractors and diggers, Spiderman and other superheroes, occasionally has a meltdown, pushes up his pants legs and sleeves, wants to be Superman for Halloween, loves to dance and sing, and go to the park and splash pad, finally mastered his bike with training wheels this summer, and is one of the most amazing boys you'll ever meet.
Now that summer is winding down and fall is fast approaching in and with it - cold and flu season, I am a little nervous about his health. I want so bad to protect him and keep him healthy. Who doesn't want that for their child?! For him, his immunity still is not like that of other three year olds. We intend to do our best to ward off any sickness so that he doesn't not need to hospitalized this winter. Twice was enough last winter. His doctor mentioned trying to get him qualified for a special shot that would offer extra protection - gives him extra antibodies I believe. It's different from the RSV shot but he still needs to quality for it. Her argument (and ours) is that is costs way more to look after him in the hospital than it would to get him this shot. (He's been hospitalized every year for RSV/Pneumonia) I haven't heard anything yet so I will be calling her this week to followup. We will also be starting his puffer again starting tomorrow to help get through the cold/flu season. My plan is to also begin essential oil treatments. Friends of ours use them and have amazing results. Thieves, Purification, Peppermint Oil, Lemon Oil and a few others will be our best friends!
Loch recently had a followup appointment with the ear, nose, and throat doctor. Everything is great. There is no need to surgery!!! He had been following him because he consistently had fluid in his left ear but I'm happy to report it has finally drained! No ear tubes needed. No need to remove his adenoids or tonsils at this time either. There is no followup appointment scheduled. If we notice anything or concerned about anything, we are to call for an appointment. How amazing is that!?
In November he will return for a routine checkup for his eyes. Which the last time were given a thumbs up. So incredible.
So that's where we are at in terms of his medical care. Fun wise, we enjoyed our first family camping adventures this summer. It was so awesome to share with one another. It has really been a fantastic summer. Excited for what's to come.
I will leave you with a note I read this morning that was posted to one of the support groups. It comes from the Peek a Boo ICU website. Because I did not write it, please click the link to read it. It brought tears to my eyes.
It was this exact moment (9:58pm) three years ago today that I got up my pprom pregnant body from watching American Idol to go to the washroom - only to discover the umbilical cord had prolapsed.
Our already scared, freaking out minds kicked into over-over drive and off we raced to the hospital. I remember that we were already in the car about to pull out of the parking spot when my best friend came to watch Abby. I remember saying and thinking, "I cannot sit down and cut off the blood and oxygen." Then I half hipped it on the what seemed like a long drive to the hospital. (We only lived about 10-15 minutes away)
We got there and it was all sort of a blur. Lots of people coming and going.
Then being whisked to the ER for an emergency c-section.
I don't remember much else. It's all very foggy. I remember being in and out of consciousness in the recovery room. But I didn't really grasp what was happening. I just remember praying.
...I didn't intend to write a post reliving moments from that day but I just started writing.
Lochlan had an amazing birthday today. I'm so very tired right now and will write about it and post pictures soon.
Lochlan is on the mend! We are just waiting on some paper work and then we are bustin' outta here!!!! He is feeling much, much better. I saw his chest x-ray and it was crazy!! I can't believe how much of his lung the pneumonia took up. Poor guy was working out of a lung and a half! It was a massive pneumonia.
The right x-ray is from his jan/feb stint with pneumonia. The one on the left is this round.
Yesterday, he still required a whiff of oxygen - his lungs just hadn't recovered. But he was feeling so much better. He was up playing and having a good time and back to his regular chatty self. (still don't know where he gets that from!)
The nurses or maybe child life services found a really cool pirate ship that Loch absolutely loved. I think we have an idea for his birthday present! We had a blast playing with it last night.
Finally he was able to have a bath last night. He was getting pretty rough looking and a bit stinky too! Although who wouldn't really?! While the nurse was flushing his IV Lochlan complained of it hurting. He ended up having it taken out after his bath because it was becoming red and puffy. (not good) The team agreed to switch him to oral antibiotics thankfully so he didn't need to have another IV put in. *sigh of BIG relief*
That sort of got the ball rolling. With the IV out he was feeling much better and also after having the bath and being all clean and renewed he was super happy. It took a long time for him to settle for bed. I think he finally got to sleep just after 10pm. We had read stories, brushed teeth and said a prayer just after 9 so it still took him that long to fall asleep. He was pretty wound up. He'd also had a pretty long nap and had only been awake since 4:45pm!
The nurse ended up coming in every 2 hours last night to check on him and finally tried him off of the oxygen around 10 or so. I can't remember. I just remember waking up suddenly and jumping out of bed thinking he wasn't breathing. Once I settled myself and my nerves I realized that nope he was just fine. The nurse came in shortly after and checked his sats and he was doing well. (95% I think)
So he slept all night without the oxygen turned on!!! This morning he woke up nice and early (considering he went to bed so late) at 7am. (normally that's his wake up time but this morning it felt extra early) His nose prongs were half off his nose so I just took it right off. (I double checked to make sure there wasn't any oxygen coming out of it.)
It's been a great morning! We played some more with the pirate ship, he had a great breakfast and looked out the window quite a bit. It was super cute when he first looked out the window - he said "Whoah - it's the world!"
It was so nice to see him so excited and happy and hear him belly laugh and just be silly.
Doctor Moore and the team came in and she made a comment about how I was already packed and ready to go! (yep, I'd started at 8am!!!) She noted that we'd done this so often that I just knew when we would be able to go home.
And I was right! He was discharged!!! His O2 was sat'ing at 97% Then we had to wait for the doctors to finish rounds and get the paperwork filled out. Lochlan was not too keen on having to wait. He was very ready and anxious to go! (as was mommy!)
Finally we "hit the road, Jack!" Made a pit stop to drop off his prescription (he'll have to finish his antibiotics for the next 6 days and take his Ventolin as needed) and headed home. He is super happy to be home and is now napping in his bed.
Dr. Moore said that because she saw him in the hospital she won't need to follow up until June. She wants him to remain on the Alvesco puffer (one puff daily) to help with the inflammation of his lungs to help him recover. Then he'll be off the puffers over the summer and most likely be back on it late fall as the cold/flu season approaches.
It's tough sometimes. He has BPD (Bronchial Pulmonary Dysplasia) His lungs are inflamed and scarred due to his prematurity and having underdeveloped lungs and being on the ventilator for so long. He has no reserve when he does get sick. A "normal" kid would likely sneeze and cough for a few days. Because he has no reserve he gets pummeled and needs help getting his oxygen saturation up. As he gets older, his lungs will get stronger but it's just something we are going to have be prepared to deal with. We will try everything we can to reduce exposure to germs - wash hands and disinfect toys and our house and vacuum carpets, keep him away from anyone that is super sick, etc. And just pray he gets stronger and doesn't have to be hospitalized again.
And remember how far he has come and what a miracle he is.
Nurse Abby
First meal able to sit up in the chair
Just hanging out.
Snacktime!
Tower building!
Cool ship eh!
Abby's card for her brother. This picture is Abby at home with a sad face because she misses Lochlan.
She wrote the message all by herself! "Lochlan, I hope you get better soon. I love you, Abby. xoxo
I put her card at the end of his bed. And some pictures around the message board.
Loch, showing off his stickers and batman Band-Aid where his IV used to be!
Chillin', reading a story!
No more nose prongs!!!!
Stretching out on a different "bed" doing some colouring.
