Guest Blogger, Janina Jochum from Notes to Nina
Based on True Events
The content is NOT intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your pediatrician or other qualified health provider with any questions you may have regarding a medical condition.
9 Tips for the First Year of Your Baby's Cleft Journey
"The First Year will be the Hardest."
51 Total Appointments (so far) ∙ 12 Ortho Visits ∙ 9 Pediatrician Appointments ∙ 12 Cleft Team Appointments ∙ 8 Speech Therapy Sessions ∙ 6 Developmental Therapy Sessions ∙ 2 Early Intervention Evaluations ∙ 2 Surgeries ∙ 3 procedures ∙ 1 Overnight Hospital Stay
When I first learned about Piper’s smile one of the biggest remarks I received was “The first year will be the hardest”. I went back through every single appointment I have written down and on this alone I can see why it is such a common phrase within the cleft community.
Throughout the last ten months we have experienced big wins and bigger scares. I spent time grieving the motherhood I thought I would be welcomed into and reveled in the motherhood I have been given the privilege to be a part of; I was more than ready for the first and am loving the unexpected of the second. I have had so many amazing opportunities to learn from quite a few cleft parents at varying stages of the journey and cleft affected parents as well to gather some incredibly helpful tips, tricks, recommendations, and words of wisdom. So since Piper was born on 9/9 I am going to share my 9 best learned practical and emotional tips for surviving “the hardest year”.
1 ) Find a Supportive Community and Immerse Yourself In It What does that look like? People that you can feel comfortable sharing not just your wins but your losses. People you can be vulnerable with, encourage, and be encouraged by. People you can teach and be taught by, celebrate and cry with through all the ups and downs. There is one linked below that I personally love and am regularly active in. Side Note because this is not something I feel is talked about enough: It is perfectly okay if the people you thought were going to be a part of your support system no longer are, and it can be just as beautiful as it is scary to open yourself up to the people that will eventually become a part of your supportive network.
2 ) Have a System for Appointment Tracking Whether it is a planner, journal, tablet, or your cell phone. There are just too many appointments to keep track of them all in your brain and even if you truly could do you really want the added pressure of having to remember every date, time, location, and all the names of the people you are going to be meeting with? We have had fifty-one appointments so far and Piper hasn’t had nearly the number of appointments she could have had! I personally put everything in my phone calendar and use my notebook on my phone. I write down addresses, times, and the names of each Dr and all the nurses who we will be meeting with; I also then text my husband just the date, time, and type of appointment as well so he has them on his phone and I can easily do a quick search if I need to pull up a reminder. Figure out what works best for you and be consistent cause your schedule is about to get busier than you ever expected.
3 ) Stay in the Moment It can be so easy to be swept up in the schedule, the appointments, counting ounces, weight checks, and learning all that medical terminology! It is perfectly okay to just take a day off; not taping for one day is not going to make or break your progress! Let your baby do tummy time and just lay with them, taped or not. Spend time focusing on just their eyes, their little nose, the chubby cheeks, and pudgy toes. It goes by so fast and sometimes those appointments can turn into distractions. As parents this journey is just as emotionally difficult as it is physically…honestly some days so much more emotionally difficult and we can spend a lot of time in those hard emotions, working through them, and letting them wash over us. There is nothing wrong with sitting with those hard emotions but do not forget to check in with yourself (and your spouse!) about what you’re feeling and please take time each day to see the reality of your situation and not just the gravity of those emotions. That your baby is doing great and so are you, so just snuggle them and remember this year goes by so much faster than we know.
4 ) Prep with Products There are so many stories of parents not being provided all the resources needed to help their babies be successful on their journey. Save yourself the headache and prepare with products that will genuinely be useful throughout your first year. My biggest recommendation; bring your own bottles and feeding supplies to the hospital for your baby! I stand firm in my firsthand experience with this because the hospital that I have birth at did not have a single bottle that Piper could use. We were told several times that had we not brought all our own feeding supplies, Piper would not have been able to go home as quickly and without any feeding support. It does not matter what your hospital said they have stocked (like I ours told us they did), bring your own supplies. Below are a few links to products that we have personally used that have been a game changer for us. Items like the Dr Browns Specialty Feeding Bottles, a crib wedge, a co-sleeping bassinet, and our Cozeecoo™ have proved immensely valuable on our journey. You can check out my Products I Love highlight on Instagram to see my ever-growing list!
5 ) Book the Newborn Photoshoot… and some pre surgery “first smile” photos too! This hits hard for me because when I first found out about Piper’s smile, I genuinely questioned whether to share photos of her pre-surgery. All at once the weight of every societal and cultural expectation hit me like a ton of bricks and I felt this incredible need to protect her from everything and unfortunately everyone. Who really wants to live their life that way? She will always be the most special gift I have ever been given and I hope one day she can look back at all the beautiful photos we have collected and see that. Just book it, you will not regret it, I promise.
6 ) You are the Leader of Your/Your Child’s Cleft Team They are on YOUR team, not the other way around. They bring the medical knowledge to the table; you bring literally everything else. You bring nuance, the specifics of your situation, you bring comfort, care, and the uniqueness they need to individualize your child’s care. Embrace calling the shots. Please remember there is nothing wrong with getting additional clarification; questions like “Can you please explain that one more time?” or “What exactly does that medical term mean in simplified words?’ are valid questions. You may not have gone to medical school, but you do not need to have in order to advocate for your child. Trust your intuition, if you feel it then say it, and even when it is uncomfortable communicate always with your team. Take advantage of every resource they offer so you feel comfortable and confident in every decision you are making for your beautiful little human.
7 ) Research, Research, Research It is going to be difficult but having even a general understanding of the process and terms will absolutely help you feel more prepared and will allow you to feel much more comfortable advocating for your child. You have probably read so many baby books and feel like you have researched and prepared so much for your babies first years of life and then wham you get hit with terms like unilateral complete cleft lip and palate, Nasoalveolar Mold, pharyngeal flap surgery, and bone graft surgery. This time there are no books. I am a big advocate of productive research. Go to your hospital’s website, look at each profile of the members of your current (or future) cleft team, look up organizations like smile train or cuddles for clefts, and the American Cleft Palate-Craniofacial Association. The ACPA site also makes it easy to look up all the cleft teams available in your state with websites and phone numbers to contact to help get started. I will link it below.
8 ) It Is Just as Much Your Journey as It Is Theirs I take so much comfort in knowing that Piper has always lived with her cleft, right from the very start. It is me as her mama that did not find out until twenty weeks into her life. That means that every single time my OB told me she was on track, growing well, measuring ahead, looking so amazing and perfect she ALREADY had her cleft! If she was healthy and thriving before I found out that meant she was still healthy and thriving now that I knew. There is a learning curve to being a cleft parent and yes it will look different than all your friends’ journeys as parents but please know that different is just that, no better or worse, and whether you are personally cleft affected or not this will change you in very much the same ways that all new parents are changed, so let it! Embrace this journey, stay true to yourself, because that is what your little needs to see, you on this incredible journey.
9 ) Above All, Give Yourself Some Space for Grace Repeat after me: just because I am crying does not mean I am not strong. Just because this moment is terrible does not mean my life is terrible. Just because I am feeling like I am not winning does not mean I am failing. Whew there are more moments than I can count that I have held Piper and cried with her, because of her, and for her. Every day she challenges me in new ways and while I grow more confident in her abilities, I know that I am only a moment away from walking backwards into my fear and doubts. It takes so much effort to grow in life and because mistakes are a natural part of growth there are days, I need grace upon grace to keep going. It is okay to let the emotions wash over you, allow yourself to freely feel them and then give yourself some space for grace because you are doing your absolute best through your hardest year.