My preemie Malena Lola was born at 25 weeks gestation and weighed 1.6 lbs. She spent almost 8 months in the NICU at the Alberta Children’s Hospital in Calgary, Canada. During this time I spent every day with my baby girl – I would arrive at the hospital very early in the morning and stay until my baby girl was asleep for the night. These were very challenging and long months, but I did my best to always stay positive and hopeful. During her hospitalization, Malena needed a PDA ligation surgery, ROP eye surgery and a tracheotomy. Once discharged, she needed to be on home oxygen and humidity. Today is completely off oxygen. Her lungs are healthy and strong and no longer has her temporary tracheotomy. She is thriving!
Here are some tips for parents of preemies who are coping with the challenges that come with a trach:
It can be very scary and upsetting when you first discuss the need for your baby to have a trach. It will be a hard decision and you will struggle with it, but do remember always that you are your baby’s most valuable advocate and trust your instincts. Don’t be afraid to question the doctors and ask all the questions you need. It is their obligation to answer all your questions and concerns before such a big decision. And also remember that as scary as it may be, a trach is a way to provide your baby with a comfortable airway and free your baby of being intubated. It will allow your baby to start feeding orally and thrive.
I remember having to tell myself that my baby girl was much more than just her trach, and I made a decision not to let her trach define her. I also made the decision to see the trach as a positive step in her development and I always made sure to avoid any negative comments regarding the trach so that my baby girl would never feel a negative vibe towards her or her trach.
Babies are incredibly strong and resilient. Babies get used to things immediately because that is all they know, so follow their lead and adjust. Be flexible and adaptable, that will help you during the emotional roller coaster ride that is having your preemie baby in the NICU. Always stay positive, hopeful and use your voice to advocate for your baby when needed.
Doctors are human beings just like the rest of us, and it is alright to question them if necessary.
Once your baby has a trach, try to use your time in the hospital – watch, learn and practice. The time in the hospital before you get to go home gives you a great opportunity to become totally familiar and comfortable with your baby’s trach. I found that the RTs (Respiratory Technicians) were great sources of information and could teach me a great deal. Also the nurses who are always around can also offer you tips and watch while you practice trach care, trach changes, etc.
Don’t wait to learn it all during the trach training course. Take advantage of every moment you are at the hospital with your baby to do as much as you can by yourself. Tell the nurses and RTs that you want to learn how to do everything and make them teach you and allow you to try to do things on your own.
This will make you feel more comfortable with your preemie’s new trach and make you feel empowered to take care of your baby.
Make sure you become very familiar with the equipment and the trach supplies you will be needing at home. Start thinking about preparing your emergency kit bag, as well as your going out / diaper bag.
Make sure you have a stroller that can accommodate all the equipment that you will need to take with you when your baby goes out (i.e. suction machine, emergency kit, oxygen tanks, diaper bag, etc)
You will also be hiring nurses or caregivers to help you take care of your baby with a trach at home. Make sure you are involved in the selection process if possible to ensure you find the right fit for you and your family. Remember, this person will be in your home taking care of your baby every day and will become a part of your lives so make sure you have the right person.
Be clear on your standards and expectations, give them a detailed job description and train them to your liking. If you are not happy with the person do not hesitate to change them. Your baby’s safety and happiness is most important, as well as your trust in this person.
Once your baby is home, make sure you spend time supervising and observing the nurse / caregiver to make sure they are doing things up to your standards. Make sure they have proper trach care training as well as valid Infant CPR Training.
During this time, the hospital will book numerous appointments for your baby. Feel free to meet with your baby’s main doctor to discuss which appointments are most important and which can wait. Many times the hospital books the standard appointments without taking into account each baby’s individual needs. In my experience, I was able to significantly reduce the number of appointments post discharge, that way we weren’t spending each week at the hospital again.
And lastly, remember to enjoy each moment with your preemie no matter what challenges come your way. Our babies are tiny mighty miracles that fight hard to live each day, and they inspire us to be strong and remind us just how precious life is. And even though your experience may not be as you had imagined or hoped, it is a true blessing to be chosen to be a preemie parent. Always remember, your baby is perfect just the way he or she is, the trach is just a part of your baby but it does not have to define him or her.
NOTE – I highly recommend joining the facebook group MOTB – Moms of Trach Babies – it welcomes all parents and family members of trach babies and it is a great source of knowledge and support. I am a member and they have been fantastic!