As I sit here reflecting on my journey into motherhood over the past 15 months and what I’ve learned so far, it’s hard not to remember how it all started; trying to conceive and it taking what seemed like an eternity, then it finally happening… or so we thought and our first pregnancy ending in a miscarriage, followed by our rainbow baby coming to us and then learning she had a congenital heart defect at the 20-week ultrasound.
Cue significant anxiety that pretty much hasn’t left us.
Looking at Sloane today, you’d never know that this little girl, who literally does not stop moving, learning, or exploring, was born with a massive hole between her ventricles and later developed a leaky tricuspid valve and a tear in the lining of her aorta.
Throughout the first three months of Sloane’s life, I learned all the medical information I possibly could have about her heart defect that I believe I pretty much became qualified enough to be a nurse for the cardiology team. I also think I rapidly learned some valuable lessons in motherhood that I want to share with you today in honor of my baby girl’s one year surgery anniversary tomorrow.
Not Setting Any Expectations When Entering Motherhood
Being lucky enough to have a mom who lives in Los Angeles, I assumed that I would spend most of my maternity leave in the sunshine, poolside, with built-in childcare.
Unfortunately, this idea was crushed rapidly as Sloane and I (and most often McGregor) were at BC Children’s hospital at a minimum of 2x a week. Sloane was not gaining any weight; she was losing a ton of weight and refused taking her bottle 99% of the time. When she did take it, she’d throw everything up.
We cycled through plans A, B, C, and would always end up on plan D or E before Sloane threw us another curveball, and we’d start the cycle all over again.
On Sloane’s charts from months 0-3 of her life, there are terms such as “failure to thrive” and “severely malnourished.”
As a new mom, those are some of the most guilt-inducing terms you can ever see. I know it wasn’t for lack of being willing to try EVERYTHING to get her to gain weight. I had an abnormal amount of breastmilk to offer – which ended up being donated – and we still had to cycle through 5 different formulas before we found one she could keep down.
Eventually, she had to be fed the most gentle formula money can buy (naturally, the most expensive one – Sloane needed to assert her expensive tastes early) via a nasogastric tube for five months. Our lives revolved around Sloane’s feeds and the various medications she had to receive ten times throughout a day.
Luckily as I entered my journey into motherhood, I already had no expectations for how we were going to feed Sloane… breastmilk from the breast or a bottle of formula, a fed baby is best… Had I had any expectations of only wanting to breastfeed, I think I would have been one hundred times more crushed than I was… That being said, wanting to breastfeed is not a bad desire to have, it just may not work for everyone and you, mama’s, need to take the pressure off of yourself (and tell others who are putting the pressure on you if it’s not working out to hit the road).
Trust Your Gut, Mama’s Know Best
Five days before surgery, we went in for our pre-op appointment, where we met the surgeon and discussed the surgery.
After three minutes of looking at and listening to Sloane, her surgeon said there is something else going on with her, and she needs to get in to see the Ear, Nose, and Throat doctor.
I was livid… not at the surgeon, but at myself and Sloane’s cardiology team.
I had always told they cardiology team that her refusing her milk was never due to her heart defect, but they kept brushing it off and telling me it was heart related. I also had told them that Sloane’s voice was incredibly soft and that her cry was so quiet. Again, they agreed but attributed it to her “lack of energy” from her heart defect.
HELLO… even when Sloane had a gigantic hole in her heart she was pretty darn fired up and ready to seize the day…which they witnessed in person every few days.
It turned out Sloane had severe reflux and has a paralyzed vocal cord… shockingly (sarcasm.. just in case you didn’t catch it) not related to her heart issues.
I know I can’t blame myself but had I pushed and fought harder to see other specialists for these concerns, it would have helped our little bean a lot faster.
So Mama’s, trust your gut and fight for your babes. The moment you enter motherhood, you know them better than anyone else.
When it Comes to Your Kids, Bottling Up Your Emotions As A Mom Doesn’t Work
Surgery day was a bittersweet day. You’re handing your child over to complete (but qualified!) strangers to perform a full-on open-heart surgery – terrifying. But, you also know that the pain and suffering she’s endured is at or is nearing its peak, and she will soon start to feel better and be able to live a normal life.
Mentally, I could prepare for this one. It was the second emergency one that happened two days later is the one where I broke down and felt entirely helpless… I also think the emotional baggage from months of doing (but not feeling), trials and errors, and Sloane’s lovely constant medical curveballs all came crashing down at once.
The surgeon (is fantastic by the way – I feel so fortunate that we were lucky enough to have had one of the top 5 pediatric cardiatric surgeons in North America), who is very clinical and has limited bedside manner, even recognized this and gave me the most awkward and appreciated hug of my life after he finished that second surgery.
Sloane healed exceptionally quickly from the surgeries and a month and a half afterward, started skyrocketing in terms of her abilities. I’m not just saying that as an overly proud mom… this girl is determined. Determined enough to be walking by the end of 8 months.
What I’ve learned from this entire experience, aside from the fact that I have one mighty little warrior on my hands, is that my typical method of dealing with my emotions… bottling them up and tossing them into the deep blue ocean never to be found again… clearly does not work. Obviously, in those tough moments, I, like so many amazing moms out there who have children with medical issues, did what I had to do for my daughter and just put on a brave face and survived. But now, looking back, I realize that I need to work through what I felt in those moments; otherwise, they will always haunt me.
So here we are, almost a year after that first surgery, and although we are in a far better place than we were, with a now very healthy (despite running a bit of a fever tonight) little girl, we are two parents who are still working through PTSD. I still wouldn’t change anything. Not only did this experience allow me to learn some valuable lessons in motherhood early, but it also has made our little girl the determined, independent, and strong person she is today and will continue to grow into.
I couldn’t be more proud to be her mama and that she is the little one who welcomed me into motherhood.