Our Baby Boy

Throwback Thursday – Life before LCA.

We decided on three kids early on. We also decided we wanted to try to not make the end of the year anymore expensive than it already was so we’d aim for a spring baby this time haha.

The plan was to try from August to November and if it didn’t happen then we’d wait till the next year. But on August 21 2018 I decided to take a pregnancy test I had at home. I don’t know why I chose to, I hadn’t missed my period yet and I wasn’t feeling any sort of way. I just took it one evening after dinner. And it was positive.

I wasn’t shocked exactly but I was surprised. I didn’t really have the feeling I was pregnant that I had with my girls.  So I went downstairs where James was playing with 8 month old Charlotte and tossed him the test. Baby number three was on it’s way.

Photo of a card. The top is a picture of Hailey and Charlotte. The bottom reads "Hailey and Charlotte. Big sisters to be. To baby number three.".
Announcing our pregnancy.

The nausea hit pretty quickly but luckily it was mild compared to how I felt with Charlotte. The baby bump though? That hit even quicker. By number three my body just assumed position.

At my first ultrasound I was dated to be due on May 2nd. A true spring baby. But anxiety of Charlotte’s early delivery had me doing the math to be prepared for a baby at the end of March.

I was high risk this time due to my eventful second pregnancy and since it would be just under 18 months since my emergency c-section, I decided I would schedule a c-section this time.

I was followed earlier and more often by the same high risk OB as before but she said she felt my energy was different this time and that it would be a smoother road. And it was for the most part.

At 16 weeks I decided to sneak away during my lunch break at work to go for a early scan to find out the sex of the baby. I knew James would be happy either way but I also knew having a boy for our last baby would be the cherry on top. I had a feeling it was a boy but I couldn’t cling to it because there were no boy’s in this generation of our family. We have two girls, and 7 nieces between us. So when the ultrasound tech found it was a boy I was elated. We were having a son, and the first grandson on either side.

That night I gifted James a little newborn varsity jacket and baby size football. He couldn’t wait for his baby boy.

photo of a blue backdrop with a blue and white newborn varsity jacket that has an ultrasound picture laying on top of it. Under the jacket is a baby sized football.
It’s a Boy.

After that things were pretty calm for a while. We started to plan his room theme, Batman, and we picked out his name. It was a nice change of pace from my second pregnancy. But I still had that anxiety in the back of my mind about an early delivery.

As I started getting closer to the end I noticed I felt a lot heavier this time. My belly was bordering on painful to carry around. It was low and massive. I was measuring 7 weeks ahead by fundal height. So off to another ultrasound, the one where I figured the other shoe would drop.

But it came back all good. I had a big baby in there (no surprise as Charlotte was too) and my fluid level was teetering on polyhydraminos (too much amniotic fluid) but not over the cusp where worry should set in…but it did. The extra fluid and the heavy baby had me having contractions on and off almost daily when I was still only 30ish weeks along. I tried to remain positive that I would make it to at least 37 weeks, my personal goal, but I also prepared not to.

Then on St. Patrick’s Day (March 17) at 33 weeks and 3 days the contractions became increasingly painful and weren’t letting up. I knew they weren’t Braxton hicks (practice contractions) and I was terrified. That was 2 weeks more premature than Charlotte. I went to L&D still hoping to be told I’m fine go home. But I wasn’t told that. I was dilating and contracting somewhat regularly, I was in preterm labor. They told me I would be going for my c-section that day but they also decided to try a medication to slow contractions. Over 32 weeks this medication doesn’t always work but we figured it was worth a shot. And it was, as it slowed things down enough to have them cancel the c-section and just admit me overnight for monitoring.

3D Ultrasound photo of Timothy's face two weeks before he was born.
Timothy the Tank.

Things stayed calm and I even got to have a 3D scan of my cute chunky little man before I was sent home where the ultrasound tech affectionately gave him the nickname “Timothy the tank” haha. He was weighing an estimated 7 pounds already which is what they suspected was putting me into early labor.

My OB decided we should just accept the fact he was probably making an earlier than anticipated entrance (definitely wouldn’t be making my scheduled c-section for April 24th) and that maybe I wanted to consider a new birth plan just in case. Choosing to try a vaginal delivery would maybe buy us more time, even in hours, if we went into preterm labor again.

I wasn’t sure as I was scared from things I had read about trying to have a vaginal delivery less than 18 months after a c-section but the idea of an easier recovery and most importantly the chance to actually hold my baby before he was whisked off to the NICU was appealing to me. James and I discussed the idea and concluded that I would decide if I wanted to try in the moment.

We also decided to move our maternity photos up a couple weeks, just in case. We moved them up to March 30th. I would be 35 weeks and 2 days then, and I had Charlotte at 35 weeks and 3 days. So it felt safe.

Photo from our maternity shoot. James and I are standing beside each other with a hand on my belly. Hailey and Charlotte are holding hands and walking towards us.
Family of Four.

I never did maternity photos with my other kids but it was a request I had for my last baby. I wanted to have them to remember that time. The day was really fun, I did my hair and make up, I got the girls all cute, and we went to the park and captured this special time in our lives. There were some jokes that the walking was going to put me into labor but I was feeling really good, no contractions, just enjoying time with my family of 4. Until we got back home…

Around 6 in the evening the contractions started again. Like St.Patrick’s Day but stronger. I got myself into a warm bath trying to ease the discomfort but I knew it was time. Although I was trying to convince James that it wasn’t, I wasn’t ready yet, I didn’t want to face the NICU again, it couldn’t be time. But my contractions were coming every 4 to 5 minutes and were intense. So we called my sister to come over for the girls, and headed to the hospital.

When I got there I was 4 cm and they knew there was no stopping it this time. And as discussed, in the moment I decided to ask if I could try to deliver without a c-section. As long as I could get an epidural because OUCH. I was told they actually prefer that with VBAC (vaginal birth after cesarean) in case it needs to become a c-section urgently so we signed the papers agreeing to the plan. And moved into L&D.

An added benefit of not having a surgery was that I could have two people in the delivery room with me. So we called my mom, who was fairly bummed she wasn’t going to be there, and had her join. My mom has been there for all of my deliveries.

Labor hurts a lot, in case no one has told you that. And due to a busy night on the ward I was waiting hours for my epidural, at which point I really regretted my choice (if I had a c-section he would be out by now!). But eventually it was my turn and after missing it twice (not a fun feeling) he got it in place and I could finally breathe a little. The hours ticked by, and after 2 am the Doctor came in to check me. She said I was about an 8 but if she popped my water it might help things along. Alright. She broke my water and started to leave the room but had to turn right back around, it was time to push.

I had only begun pushing when there started to be some heart deceleration’s in Timothy. They told me if I didn’t get him out in the next two pushes we might need to consider switching to a c-section. No way was that happening. I did not go through these last several hours of pain just to end up with a c-section still. And so I did it. I got him out in 8 minutes of pushing and behind him a tidal wave of extra fluid (RIP to James’ shoes haha).

And then I finally got to hold my baby boy. Born on March 31st 2019 at 2:43 am. At 35 weeks and 3 days just like Charlotte, and weighing 6 lbs 10 oz just like Hailey. He was perfect. He is perfect.

Photo of Melissa holding a newborn Timothy with James smiling down at him beside her.
Meeting our baby boy.

Timothy Edward.

Thank you for reading more about our journey!

Dear Timothy

A letter to my baby boy.

Dear Timmo, Tiny, Teeny, Timotee, or one of the many silly nicknames you get called:

I can’t believe your first birthday has come and gone already. When I think about your first year it feels so long and stretched out and like it went by so quickly all at the same time.  

Newborn Timothy wrapped in a white  blanket with blue stripes with a soother in his mouth. He has an iv in his right hand and his eyes are open forward.
Newborn Timothy.

Timothy, you entering our family changed everything for us in so many ways. You are the first boy in our little family but also the first grandson on both sides of the family so there was a lot of excitement to have a little man join us after so many (adorable) little ladies.  You are also what we plan to be (never say never) our final baby and the completing piece of our family. And then of course there is the fact that you were born blind.

I was so excited to be having a baby boy but also very nervous. I have 2 younger sisters, I have 6 nieces, and I have your 2 sisters. Girls are kind of what I’m used to. I wasn’t sure if our bond would be different than the one I had with your sisters, and quite quickly after you were born I learned that it definitely was different but not in the way I expected.  There is something about being a mom to a little boy that is a whole new kind of magic.

Timothy at a few months old laying on the floor beside his dad. He is feeling his dads face.
Father and Son.

Your presence had a sweetness to it from the very beginning and it is what I love the most about you. You are the best at cuddling, always getting so close and curled up against me or dad (or some of your other favorite snuggle buddies) and letting us soak in all the baby love you have to offer. You never want to be too far from us and I love watching your little hands reaching out to find us and pulling yourself closer.

A very close second to your sweetness is your pure joy. Your smile lights up the room and your laughter is contagious (even more so than COVID-19). I would do just about anything to make you laugh your deep belly laugh and see that bright smile on your face. When there were tough days during the months we were awaiting a diagnosis I remember that every time you would smile I knew that no matter what you are the perfect little boy for our family and that you will be just fine.

Timothy at 8 months old smiling and playing in his exersaucer.
Smiles.

Watching you grow this past year has been the greatest privilege and blessing. You have changed everything in our family and made us stronger, kinder, and more determined people than we were before. Most importantly you have taught us about love in ways we never could have imagined without having you in our lives.

The way you trust us to catch you whenever you decide to be a little braver than you’re ready for shows me that we are doing a good job because we are your safe place. And I hope as you continue to grow and learn and get even braver, you will know that you can always trust us to catch you. We will forever be your safe place, your biggest fans, your greatest supporters, and your loudest advocates. We love you so much buddy, just the way you are.

Timothy on his first birthday leaning mouth first into a corner of his blue birthday cake.
Timothy enjoyed his birthday cake.

Love, Mommy

Timothy’s Story

When we found out we were expecting our third and likely final baby I had a lot of feelings. The first feeling was surprise, we had only started trying and I had not expected it to happen that fast. Then there was a tinge of sadness about this being my last time experiencing pregnancy, newborn snuggles, and all of the firsts (I plan to write a deeper post on those feelings later). And of course there was the feeling of JOY because we were about to welcome another little life to our family!

Having had two girls before and collectively having SIX nieces we were super anxious to find out if we would be the ones to add the first boy. After much discussion we had decided we weren’t going to find out the gender and keep it a surprise. Although knowing myself I am not sure why I ever thought I could do that, how could I plan everything without knowing the gender? So I decided to find out the gender on my own at a private ultrasound. As soon as I found out I was expecting a boy I couldn’t contain my shock and called my sister instantly. There was a couple hours that afternoon I toyed with the idea of not telling my husband and letting it be a surprise for him but I thought yeah right and told him as soon as he was home. I think it took a couple days for him to believe me since he had no idea I was even getting the ultrasound. Soon enough we were planning the batman theme room.

The rest of my pregnancy went fairly smooth, especially in comparison to my high risk pregnancy with Charlotte. That is until 33 weeks and 6 days when I started having really painful contractions and ended up in preterm labor. But luckily we were able to receive some steroid shots for his lungs and a medication to help stop the contractions. We made it another week and a half longer before he couldn’t wait any longer to make his grand entrance at 35 weeks and 3 days.

Sleeping newborn baby wrapped in a blanket wearing a blue and white hat that says "Timothy".
Brand New

Timothy Edward was born March 31 2019 at 2:43am. He weighed a whopping 6 lbs 10 oz even as a 35 weeker. We chose his names after my brothers Tim and Ed who have passed away.

Ever since day one Timothy was such a special presence in our lives and the perfect puzzle piece to complete our family. He instantly gained the love affection of his two big sisters and everyone else who met him.

Life for our family was hectic with three kids and two under 2 but we were managing and loving all the memories we were making.

When Timothy was about 6 weeks old we were at my parents’ house for dinner and my mom mentioned to me that the way he was moving his eyes seemed off. I brushed it off as a weird baby thing but it got me thinking. The next few days I went into panic mode at home when I would see him do odd eye movements. I spent hours upon hours staring at him trying to get him to stare back and he never would. A fleeting thought of “what if he is blind?” crossed my mind but after some googling and talking to my husband we concluded that at 6 weeks old it’s too soon to say whether or not a baby should be focusing on you so we left it.

About a month later I took him to the doctor for a general check up and that is when everything changed. The doctor instantly noticed his eye movements and asked me if I wanted him to call me an ambulance. I was confused, scared, and alone at the doctor’s office with all three kids. I asked him if there was something serious going on and he just said that he will write me a note to take into the Children’s Hospital that day once I had a chance to arrange childcare.

I took him in and we were taken to the back almost immediately. They told me they were concerned about seizures and we would need to see a neurologist in the next 48 hours. After a slightly abnormal EEG we were put on seizure medication and referred to an ophthalmologist because they were also concerned about his lack of focus at now 3 months old.

Baby boy 3 months old wearing a yellow and white striped outfit. He is sucking on a blue soother. There are wires taped to his head with white bandage wrapped around them.
Timothy getting his EEG

The days between appointments felt like weeks and the weeks waiting for more tests felt like months. Finally after a second EEG and an MRI we were told they no longer believed it was seizure activity and that his eye movements were likely solely related to his eyesight. We were taken off the seizure medication and now we just had to wait to find out what was going on.

When we finally (a couple weeks later) saw the ophthalmologist it only took him 10 seconds of looking into Timothy’s eyes to tell us there was definitely a retinal issue and that we would need to go for further testing with a specialist 3 hours away. He told me Timothy wasn’t focusing on anything, tracking, or reacting to light as he should. He also said he couldn’t diagnose for sure but Timothy likely had something called Leber Congential Amaurosis or LCA.

We waited three months to see the specialist and receive the testing that confirmed the diagnosis of LCA but I had known it was true from the first mention of it. We won’t know for sure what Timothy has for vision until he can tell us but due to his lack of response it is expected that he has no usable vision and little to no light perception.

Right now we are still awaiting the results of the genetic testing to tell us which gene is affecting Timothy and get any information we can from that. But overall we know that there is not much available for treatment of genetic retinal conditions and currently there is no available treatments for LCA in Canada.

7 month old baby boy smiling with his hand in his mouth.
So sweet.

In these few months of knowing Timothy is blind our world has shifted and changed completely. We decided to dive right into learning everything we can in order to help Timothy grow up safe, strong, supported, and independent. Timothy is the sweetest baby with the biggest smile and the loudest giggles. He has brightened up our entire life with his presence and shown us a love deeper than we knew before. His story may have some twists and turns in it but we wouldn’t have it any other way.