A year ago today, we gave our daughter to surgeons for the second time in her short (not even) four weeks of life. This time, it was for her tracheostomy. In the past few days, I've been seeing and reflecting on posts from last year detailing our thoughts and decision-making process of signing the consent forms for this surgery we never saw coming. I struggle to remember the days before Savannah made her appearance, but I struggle even more to remember the whirlwind of time between her birth and the tracheostomy.
While remembering specific events proves difficult, I can easily recall the emotions - the blinding fear, the anxiety of not knowing what to expect, and the overwhelming pressure to learn so much in such a short time. I frantically searched the internet for something that would ease my mind and provide some hope. If I could go back in time, I would tell the soon-to-be trach mom version of myself 6 things.
1) A trach does not decrease quality of life. From time to time you may hear comments from others (direct to you, on social media, or overhearing another conversation) that point to the assumption that having a trach leads to a poorer or lesser life. While you know that's not the case, these comments will hit you in a way you don't expect - like a punch to the gut that takes your breath away. You'll wonder what others think of the decision you made for your baby - do they think you're being selfish for trying to save her? Do they believe that you should have not intervened and let her pass? Please remember that even if someone else wouldn't go through with a tracheostomy that you are doing the very best you can to give your child the absolute best chance at thriving.
2) You WILL be able to learn and do everything your child's trach will require. You may cry the night after your first training post-tracheostomy. You may think you'll never be able to learn, understand, or ever feel confident in the the vast amount of care involved in being a trach mom. There is so much information to remember, and you will likely be scared of inadvertently harming your child due to poor memory. I can tell you that you will not only be skilled in your child's care, but also able to rattle off your child's medical history, medications, and care routine easier than listing your family member's names.
3) You really will fall into a routine quicker than you expect. While there is so much involved with caring for a child with a trach, you will find a way to organize yourself, the supplies, and the care in the way that is best for your family. The minutes leading up to a trach tube change will no longer cause your heart to race or skip a beat. You'll have your acetic acid recipe memorized down to the exact measurements of water and vinegar for each of the sized containers you may use. You'll still have your trach care information handy, but you won't have to refer to it every time you do care to make sure you're not missing anything. You'll even find joy in how much faster trach tube and tie changes are once you and your child get into a routine!
4) You'll be mistaken for a nurse. When doctors, nurses, or therpists meet you for the first time, you'll often get asked if you have a background in nursing. At first, you may laugh at these moment and brush them off. Eventually, though, you'll get to a point where you'll see why you're so easily mistaken for a formerly trained nurse. You will be the one calling the shots in an emergency trach change - even in the hospital. You'll know your child better than anyone else and see the signs of an impending mucus plug long before it presents a problem. You will be the expert of your child.
5) You'll soon feel comfortable disagreeing with care teams and pushing for what you know is necessary. During care team rounds at the hospital, you will often be asked what your child's baseline is, your thoughts on the day's plan, or trends in her vitals. You may feel panicked. You may think, "How am I supposed to know what my child's baseline is? I am a new mom and just beginning to pick up on the language and information of the medical world we've been thrown into." You may be wondering what insight you could possibly provide that the doctors don't already have. Soon, you'll know and see that you truly bring value to meetings with her care team. You'll be able to easily identify when things don't sound right or speak up when something is incorrect. You'll be able to quickly think of questions you need answered and present them to the team. You'll be able to speak to the nuances of your child's baseline. Sometimes, the care team may discuss a route that makes you feel uncomfortable. Trust your mom-stincts - you were given them for a reason.
6) You will be thankful your child has a trach. Yes, there may be times where you wish your child didn't require a trach; you may even feel a twinge of jealousy when you see others parents only lugging around a diaper bag when taking their child out. However, you will be thankful for the life your child is able to lead with the help of their tracheostomy. You will be thankful for the moments you get to spend with them - even the smallest of moments that may otherwise be taken for granted. Sure, there's a lot involved with being a trach mom, but there are so, so many blessings as well!