Parenting can be hard on a good day. Before kids, we always dream or imagine what life is going to be like when we get older. We’ll get married at 25, have kids at 27 and have our dream careers. At least that was my thought when I was 12. You don’t think about the things that can go wrong when you’re young. We’re strong, and basically indestructible - at least that’s how I felt until the day I had my first baby.
When I had my first child, I knew what those rich and powerful people in movies and books felt like - you know, once they have a family, now they have a weakness and people come after their kids to get money out of them. Except in my case, I now knew what it felt like to worry about stuff that wasn't even a thought in my mind before kids. I could go on forever with this one, but to name a few - when they’re learning to walk, you’re afraid they’re going to smash their face into the floor or a very sharp corner, they’re going to drown when you take them swimming, they’ll have SIDS, etc…
After my second, I thought I had it in the bag. I knew what having kids was all about at this point and I was determined to not be quite such a helicopter parent with my second. It’s a good thing I wasn't, because my girl is crazy and does things that my son would never think of. (She’s been off the diving board at the tender age of three, and also got her first stitch at the same age).
When it was time to give birth to my third child, it seemed like a series of unfortunate events unfolded. Besides for coming at a very busy time (Dec. 30th - we were in the middle of putting away the Christmas decorations), we also had an inducement appointment. I had this done with my daughter, but this experience was definitely not the same. Logan’s due date was actually Jan. 14, 2023, but considering that my daughter was born with shoulder displasia (my daughter was almost 10 pounds and her shoulder got stuck on my pelvic bone and it was difficult to get her out), the doctor thought it would be safer if we had Logan earlier than his due date.
Getting induced was not a pleasant experience for me. From having a male doctor, to the pain of it, and more from the pain of the nurse pulling the strip out - I would rather have the pain of birth again to that; trust me, it was BAD. I screamed so loud I think a couple of nurses had to check on us. The inducement to time of birth was maybe 24 hours, so really, not bad in the grand scheme of things.
The birth didn't get scary until my son’s heartbeat dropped quite drastically and the doctor threatened me with a c-section. Now I know a lot of women plan (or count) on a c-section to have their babies, but getting cut open is so much scarier than having a natural birth. The risk of infection itself is scary. Needless to say, I had my son naturally, but he was born with a lot of fluid. When they tested his oxygen level, he was at 82% and he needed to be at 94% or better. The original thought was that he was having a difficult start because of all the fluid that was in the amniotic sac.
The next thing I knew, the nurses from the NICU department were telling me they had to take my baby away for further examination and oxygen. Of course I was devastated. I was starting to come down off adrenaline, and having this huge hormone surge and I couldn't stop crying.
The next time I saw Logan was after a shower. We walked over to the NICU area, and he was hooked up to a feeding tube and an oxygen tube. I mean, those things aren’t pleasant for an adult, so imagining my baby in that position was devastating for me. The nurses advised me to start pumping milk (as much colostrum as I could anyway), and they were going to feed him by dropper into the feeding tube.
My husband thankfully stayed with me that night. I don’t think either of us got any sleep. We had a shared room, and the other couple’s baby had cried all night long.
At 5:00am the next morning, the doctor from NICU determined that Logan was good enough to be off oxygen and back with us. We were so thankful. I spent the time holding him on my chest and attempting to breastfeed. We were impatiently waiting for the pediatrician to come in and clear us so we could go home. Well, that was not to be. She came in and said Logan was too jaundiced, and he had to spend 24 hours under phototherapy.
At the same time, my mom was having difficulty with our two other kids and she wanted to go home. So Chad had to leave, and we opted for him to stay home with the kids so my mom could have a break.
A newborn is supposed to pass meconium (the liquid he swallows in-utero), and the meconium is not quite the same as a regular bowl movement. In Logan’s case, his CF undiagnosed at this point in time, he was having issues passing the meconium. When it did come out, it was like a little puff pellet that had a hard outer shell and air on the inside.
As he was laying inside the incubator that night, I was attempting to feed my baby using the dropper and my colostrum, and he started choking. I had my arms in the holes (I wasn't allowed to take him out), and I couldn't get to him fast enough. I called the nurse and told her that my baby was choking.
Faster than I knew, they wheeled him into another room, and stuck a tube down his nose and throat to get him breathing again. I was in shock this entire time, and I couldn't stop shaking. It was the hardest thing I had to watch and I had no one to support me - I was alone just as my baby was alone in that moment.
From that point on, they kept him in the NICU area. I couldn't sleep, so to distract myself, I went back to my room and actually edited a video. Remember, I was there alone at this point and I had completely forgotten that it was New Years Eve.
The next morning, I was evicted from my room. My husband came to pick me up at 11am. That was the hardest thing I ever did - leave my baby there by himself. They had to keep him there for observation and care. He had dropped in weight to a dangerous level (he wasn't absorbing any nutrients from the colostrum or the formula), and also due to that, he was still experiencing jaundice at a high level.
Before we left they informed us that they would have to give him an IV (again, something that devastated me, but we had no choice). He also had another choking event while he was under the phototherapy lights in the incubator in NICU). At the time, he had two pediatricians watching him along with several nurses. This was on January 1st. It was truly difficult because our other kids were missing me, and the hospital was thirty minutes away. We would drive back and forth twice a day so I could hold him, drop off milk and sometimes feed him. I was actually quite angry at times, because the nurses started feeding him formula right away, even though I had made my milk available and I made sure to call to let them know we were coming round so I could breast feed him. They seemed to be very uncooperative.
Logan was released from the hospital on Jan. 4, 2023 with moderate jaundice. We had health nurses come visit multiple times for weight checks. At this point, he was gaining weight, but not at the rate that was necessary.
On Jan. 16th, 2024 we got the call from the pediatrician on duty that Logan had cystic fibrosis. I was in complete and utter shock, because I had never heard of it in our family. For the longest time, I literally thought it was all just a really bad joke. It was finally determined through the newborn screening blood tests. We had an instant referral to the CF clinic at the U of A Stollary children’s hospital. Little did we know that would become our life for the next year.
The appointments did nothing to make me feel better. As the year progressed, I began to feel worse and worse until I became depressed. Logan however did improve and started to gain weight. As a matter of fact, he currently sits on the 90th percentile.
After his diagnosis, (even before for that matter), how we treated and dealt with Logan was different in every aspect. We had started Logan on the enzymes required for digestion. This is what helped him actually be able to absorb nutrients from his food so he could gain weight. They have two types - one in a pill form for older kids and adults to take, and one with the individual enzymes you add with a scoop. They ran out of the second one, so we had to purchase contact chambers, and break open each capsule and add them to the chambers. Then we had to get baby apple sauce, add 1/8 tsp salt (daily dose) and make tiny dollops to freeze (so we could save the applesauce and make sure it lasted). We had to feed him a capsule before each breastfeed. As he got older, we increased the amount of enzymes and this process was very time consuming, as I’m sure you could imagine. It’s just now, when he’s almost 16 months old that they’re going to give us the individual “scoop” enzymes which will finally make our lives a little easier. I’m sure that was just an oversight, but at the time when things were scary and hard, that simple little task was magnified 1000 times.
When Logan was younger, we also had to deal with choking incidences at home. It was actually from Logans body producing an excessive amount of mucous, and as a baby, he didn’t know what to do. I panicked each and every time it happened. I had to scoop it out of his mouth and his nose in order for him to be able to breathe again. Even when he didn’t have a cold, this excess mucous would build up and become a nuisance on a nightly basis. I used the Frieda nose sucker quite frequently during this time.
Other hardships that we experienced were the bowel movements that our son had. They were not completely normal, and apparently will never be normal. They are excessively smelly, and will be even worse if he forgets to take enzymes before food. Since he was on baby food up until four months, (he has since been weened off completely), he had between 7 to 17 bowel movements per day. You could imagine how hard this was on the budget to keep up with the diaper requirements.
In addition to that, our kid could eat. It did get better once he started eating solids completely (as in toast, meat, and veggies/fruits). However, when he was on formula, he would require double of what a normal baby would eat. Formula is expensive. I tried to breastfeed as much as I could, but I couldn’t keep up and I had trouble making milk (even while pumping) with my last two pregnancies.
Also, the appointments were weekly for awhile, which made it very difficult. (Here in Alberta, the winter roads are a little scary to drive on, but especially with a little baby in tow, downtown). After a month or two, the appointments became every two weeks, and then monthly. Finally, once he turned one, the appointments will be every three months going forward for the rest of his life. Overall, it was an extremely challenging time.
Throughout all of this, I experienced the seven stages of grief. I was in shock at the beginning - I literally have PTSD from some of the events that happened while I was in the hospital. I still have nightmares and occasional relapses. Next, denial - I attempted to treat my baby like a normal baby, just with the extra steps to secure his survival. Then, anger. I was so angry - at my husband, at myself, at everyone, but it was easy to blame the doctors too. I blame myself the most, because it was my DNA (and Chads) that did this to my baby. Then I bargained. I don’t believe in god nor the devil, but I bargained with both to save my baby. I even swore I would give years of my life if it could only extend his. Then, depression. I’m just coming out of this stage, and I wouldn't say it was the hardest, but maybe the darkest. Now, I’m in the testing and acceptance stages. I know there’s a future for my little one. Trikafta is a drug that aids in cystic fibrosis treatment and can often be a game changer. It was just approved for the ages of two to six here in Canada, and it will be enough of a change to make my childs life as close to normal as he can be.
I go into full fledged panic mode when my baby gets sick (it’s inevitable since my oldest is in school, and my daughter is a walking germ). Having a healthy baby is already stressful, but when your child suffers from some kind of disease, it’s absolutely terrifying as a parent to watch. It’s even more terrifying to think and wonder about the unknown future and what it holds in store.
As my kids get older, it has definitely become easier. My oldest is getting more independent, (so is my daughter for that matter), and my baby is out of those scary first year moments. Now I’m just trying to make sure he doesn't fall on his face or eat dog poop. (Regular kid troubles) LOL
I just wanted to thank everyone who reads this, as it is a story that was extremely difficult for me to share and took a long time for me to form the right words.
I appreciate you!
Sandra
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