A Letter from a NICU Nurse

We have met many amazing families and children on our journey with Down syndrome  over the past year. But, for families like ours, traveling down this road also introduces you to another community that you may never have expected that you would spend so much time with: the medical community. Mark was born at Johns Hopkins Hospital in Baltimore, Maryland, due to a concern that he may require cardiac surgery for a possible congenital heart defect. In what turned out to be a short albeit stressful neonatal intensive care unit (NICU) stay, we met two incredibly compassionate and loving people - our nurses, Desi and Katie. These two women guided us through a time that was filled with many different emotions, from joy to sadness to fear. We are so grateful for their devotion to their profession and their patients, including many families who have given birth to children with Down syndrome. We asked one of our former NICU nurses, Desi, to share some of her thoughts on caring for a newborn with Down syndrome and their family:

When I was asked to write something for such an inspirational community, I was hesitant at first.  As proficient as my documentation at work may be, I don’t document my feelings about the work that I do as a NICU nurse.  I document assessments, bradycardias and desaturations; I score pain and narcotic withdrawal.  But why not put into words what I love to do? And why not use this opportunity to recognize NICU parents for really having the hardest job there is.

The advice I can offer parents who may be going through a scary NICU experience or an unexpected diagnosis is to love and admire your baby just as you did before you received the news. That is the number one thing your baby needs from you. When she asked me to write for the blog, Katie didn't ask me to write about her family or Mark in particular. Of course I gravitate towards this family when I think about my work relating to caring for babies with Down Syndrome. 

I met Mark and his parents during a scary time for them in the NICU but they had long before committed to loving, admiring, and supporting their sweet new baby.  They had no prior personal relationship with Down syndrome and committed to this experience without knowing what the outcome would be.  Acceptance like this isn't always the case.  That is why this blog and the community this family has joined deserve recognition: to spread the knowledge of how wonderful it is to love a baby with Down Syndrome.

One of the most affectionate patient populations I care for are babies that are diagnosed with Down syndrome.  I have witnessed firsthand how it is in their nature to be joyous, loving and attentive.  We can't say this about all people. This diagnosis may come with a lot of fear of the unknown for parents.  However, not only has medical care advanced as we learned more about Down syndrome, but so has the support for families that may be overcome by that fear. This is because of educational and supportive communities such as the one that Mark's family working to contribute to. So parents, please, keep up the great work, because your kindness and acceptance will be contagious to the world. 

Desi Jeliazkova is a NICU Nurse at Johns Hopkins Hospital in Baltimore, Maryland. Desi took care of Mark in September 2017, almost one year ago. Nurses like Desi help many babies and their families navigate the physical, mental and emotional ups and downs that occur when a newborn is admitted to a NICU after birth. We are grateful to Desi, and the countless other NICU nurses, who care for and support families with Down syndrome during the early days of their children's lives. Thank you, Desi, for contributing to the conversation we are having about Down syndrome!

Friendship Doesn't Count Chromosomes: A Letter To My Dearest Friend, Jessica

I will never forget the day that I told my oldest and dearest friend, Jessica, that Mark would be born with Down syndrome. She was pregnant with her first child who was due to be born a few weeks before Mark. She had just found out that she was going to have a little girl. She was feeling great, loving pregnancy and truly glowing. I was on what felt like a downward spiraling roller coaster ride of fear and sadness, worrying that every little kick I felt might be the last and afraid of what the future might hold for us.

And when I told her those words, in her infinite optimism and compassion, she told me “it’s going to be okay.” And she was right, of course. But her outlook on all of this was not what impressed me the most, and I suspect that as an elementary school teacher with more experience and love for kids with special needs than I had ever been exposed to at that point she had a very realistic picture of how enriching being a parent of a child with Ds would be. No, what impressed me the most then and still to this day has been her unfailing love and support for me and my son during the very highs and lows of our pregnancy, the early months of Mark’s life, and, undoubtedly, during whatever trials may be to come in the future.

You see, I imagine how hard it might be watching your friend going through a difficult pregnancy, having frequent bad news or health scares all the while going through a very enjoyable pregnancy on your own without any obvious health or developmental concerns for your child. I imagine that could be really hard for some people. And while I am sure that it was hard for her to see me sad or afraid, she never left my side. She watched our daughter so that I could go to appointments. She called to check in and talk about new (sometimes scary) information we were getting. “It’s going to be okay.” Always the optimist. And always right.

And when her sweet little Harper was born, it only seems fitting that her new friend Mark would follow right behind on the very next day. And when they met for the first time, it was no surprise that they somehow were able to find each other’s hands to grasp. Just like Jessica grasped my hand when I needed her the most.

And while Mark may not be “typically developing,” I know that Mark and Harper will have a very typical friendship, because her mom has only ever seen how special every single child is; she has only ever seen the good in the people around her. And that’s what brings out the best in everyone who knows her, including me.

My dearest, Jessica. Thank you for only ever seeing the best in me. Thank you for only ever seeing Mark as a little boy, and never a boy with a diagnosis. Harper is so lucky to have you as her mom, and I know that these two friends will be bringing out the best in each other for all of their days.

Happy 10 Months, Mark!

Happy 10 months, Markie! The past month has brought a lot of new things out of this little guy, and his BIG personality is showing more and more. In the last month, Mark has started doing a number of new things, which all started when he decided that he had a lot to say! He started saying "da-da" and the talking has been nonstop since then. We hear quite a bit of "la-la," "na-na," and (my favorite) "ma-ma" all day long...and also quite frequently during the early hours of the morning. *sigh* 

Mark has also started self-feeding! His favorite food to feed himself is Gerber puffs.

When in doubt, pass the Puffs!

He also enjoys eating cheese, peaches, pancakes, crackers, chicken nuggets (especially from Chick-fil-a), and broccoli. He even had pizza for the first time this month! We recently had Mark evaluated by a speech therapist with a special certification in oral placement therapy. And let me just say WOW! One of the things that I never anticipated on this journey was truly how much I would learn that I never otherwise may have encountered. As you may know, Down syndrome, like many other conditions, results in varying degrees of decreased muscular strength and tone. Not only does this include the larger skeletal muscles, but also the small muscles of the lips, jaw and tongue. This is one reason that infants and children with Down syndrome have more difficulty with feeding and speech than neurotypical peers. So we are working with Mark performing feeding exercises to increase his muscle tone. Luckily he loves to eat! He does however hate practicing drinking from his Honey Bear cup to learn how to use a straw. Sorry, buddy!




We have also been enjoying some summer fun together as a family! Mark got to swim in the pool for the first time, and it is fair to say that he is a water baby. We are hoping he can encourage his big sister to get into the pool a little bit more too. We got to walk in a parade for the first time together as a family when we participated in a local July 4th parade walking with our friends from our local Gigi's Playhouse.

 

Mark has even been on the move over the past few days. If you follow us on social media, you likely saw our recent video of him starting to army crawl. Look out, Mom, Dad and Rachel - Markie is coming! And if he isn't trying to get to a new toy, you may find him on his Pooh Mobile waving at his adoring fans or being silly taking Snap Chat pics. You probably won't find him taking a nap though!

 

Thank you to everyone who has been following along as we document our journey! We are enjoying every moment with Rachel and Mark, powering through the often sleepless nights, taking car naps and doing all of the things that typical families with small children do.

Happy 10 months, sweet boy!

Love,

Mommy and Mark

What does freedom mean for my son with special needs?

Tomorrow is Independence Day, and while it's a great time to have a barbeque with friends, watch some fireworks and head to the beach, have you ever taken time to think about your rights, liberties, and pursuit of happiness? Or, to think of it another way, on a day that we celebrate our freedoms, maybe we could all take a moment to think about what liberties we are granted (and maybe also take for granted) that others may not have the same right to. 

This year, celebrating our freedom certainly means something different to me than it did last year when I was pregnant with Mark, and even more so than it did all of the years before that. Before Mark. Before I knew anyone with Down syndrome. And, most of all, before I ever imagined what life with a child with special needs would be like. Now, let me be perfectly clear: our life with our son is wonderful. He is a happy and loving baby, and if you asked him what "pursuit of happiness" means to him, he would undoubtedly tell you that it means food and snuggles. Yet, while we are enjoying watching him grow and just be an infant like his peers, we have had our own challenges already and it is not lost on me in any way that there will be trials ahead. We will be tested. We will have to advocate for our son with Down syndrome, our son with special needs. We will have to fight for his freedom to be included in school programs; we will have to fight for his right to be included in the workplace and be given equal pay for equal work; we will have to fight to ensure his happiness as a contributing and accepted adult man living with Down syndrome in this country. 

And the fight for freedom and equality, inclusion and acceptance starts now. It starts by raising awareness. It starts by educating people around us about the inequalities and civil rights issues that continue to face people living with Down syndrome and those with other disabilities. Mark may be a baby right now, doing cute little baby things. But before long he will be in preschool, and we will begin the process of creating an individualized education plan (IEP) that will continue with him for the duration of his education. He will go to elementary school, and that will begin the fight for free appropriate education in the least restrictive environment (e.g. FAPE in LRE) that could go on for the remainder of his education. We don't know what Mark will enjoy or want to do with his life, but he could very well want to go on to a college program or do some kind of post secondary education; we may have to fight for that too. And when he holds a job, we may have to fight against the antiquated and restrictive laws that continue to allow employers to pay individuals with disabilities below minimum wage. 

So, we will all celebrate tomorrow doing fun and festive activities out in the smoldering July heat and humidity of Maryland wearing red, white and blue in commemoration of our great nation. Because it is great. But, it will be done with all of this in mind. It will be done with the knowledge that the future for Mark, for our family, for all children - neurotypical or those with special needs - is only as bright as we are willing to make it through our own love, devotion and hard work. Please, take a moment today to think about all of the freedoms and liberties that you and your children enjoy. Be thankful. I know that we are thankful for all that we have, but we are also here to fight for the people that we love and are grateful to call our family and friends in the Down syndrome community. 

And we hope that you will be by our side. 

Celebrating Dr. Sweeney

On May 18, 2018, after a lot of prayer, I determined that God was calling me to do something out of my comfort zone: share our story. We made a Facebook page and started our blog, and from there we have started to make our own little mark for Down syndrome in our community. On that very same day, unknown to me at that time, our local community suffered a heartbreaking loss with the sudden passing of Dr. Bill Sweeney. Dr. Sweeney was my perinatologist. He delivered our prenatal Down syndrome diagnosis. He gave us so much hope in that moment, and I have been blessed since the day that I met him by his love, compassion and support. He was an inspiration to me and one of the reasons I felt compelled to start our family’s personal awareness campaign. He strongly believed that families like ours could help to change the outdated perceptions of people living with Down syndrome that persist in society, and particularly within the medical community. Dr. Sweeney, I hope that what we are doing and what we continue to do is putting your hopes into word and actions that make you proud.

When I was approached to speak at his memorial service given at Anne Arundel Medical Center yesterday, June 30th, I felt incredibly honored. Unfortunately, life has a way of hitting you in the face, and I was unexpectedly unable to attend at the last minute. Yet, as always, this was part of God’s greater plan, and I cannot help but feel that Dr. Sweeney was involved. Mrs. Lantz, the wife of Dr. Sweeney’s long time friend, Dr. Michael Lantz, graciously  offered to read my eulogy. Mrs. Lantz’s brother has Down syndrome. His name is Mark.

Mrs. Lantz, thank you so very much for reading these words of mine. I feel closure now knowing that this message was delivered and that Dr. Sweeney has been able to bring you and your family into my life, something I know he is up there smiling about.

And here are those very words:

My name is Katie Baker. I am a physician assistant; and although I learned a lot about what it means to be a great medical provider from Dr. Sweeney, I learned that from him as his patient and he my beloved physician. I am honored to be able to share my family’s gratitude and love for him with all of you today.  And when I say “family,” I do not only mean my husband and children; but I also refer to a group of people whom I have come to call my family, and that is the local Down syndrome community which we became a part of last September with the birth of our son, Mark.

Dr. Sweeney was an incredibly important person to so many families who are also on this journey, and like all of his patients, he will forever hold a special place in our hearts. He delivered the Down syndrome diagnosis perfectly. Every time. Hopeful and optimistic about the future, both near and far, while also acknowledging the challenges that each family may face. He was always compassionate, and over time I learned that he was an unwavering supporter of children and adults like my son. He saw the promise and potential of all of our babies with Down syndrome, something that others may not have, and something that sometimes we ourselves may not have when we were starting on our own journeys with this diagnosis. I will never forget when I called him to let him know that our screening bloodwork supported the suspicion that our son had Down syndrome. We agreed that any diagnostic testing was too risky given the very real concerns for Mark’s health at that time, and that we would continue our pregnancy knowing that Mark would most likely be born with the condition. He then told me that he was sorry that we were grieving the child that we thought that we were going to have, but that “you are going to find that this child will bring you more profound joy than you could ever imagine.” Dr. Sweeney, you were so very right.

Every one of his patients who gave birth to a child with Down syndrome will tell you a similar story. He was devoted to each and every family. He took the journey with you from the moment of your diagnosis. He cried, he laughed, he gave you advice when you wanted it and other days he just listened. He advocated for each mother and child throughout the pregnancy. He directed you to invaluable support groups. He called patients after our babies were born to check in, even if it was the middle of the night, a weekend or on his vacation. He was the exemplar physician, and his unexpected passing has left a huge void in the lives of so many people who loved him, the medical community that praised him, all of his patients who adored him, and the local Down syndrome community who cherished his enthusiastic support.

Dr. Sweeney was a great man, a beacon of hope for his patients who chose to go on this journey, and all of those with challenging pregnancies. His legacy will live on in the stories that we tell, the stories of our children whose lives were made possible because of his love and commitment to them and us.

After our son was born, my husband and I took him out to dinner to thank him for all that he did for us, to celebrate our son’s birth, and simply to just be people. He told us that he was so proud to know families like ours. I remember feeling embarrassed when he said this because he did not even realize that the only person at that table who was special was him. He spoke adoringly about his wife, told stories about his children in whom he felt such immense pride, and shared pictures of his beautiful granddaughter who he loves with all of his heart. I am so grateful to his family for sharing him with our community for so very long.

Dr. Sweeney, you may have felt proud to know us, but we are the ones who are proud and privileged to have known you. The world is definitely a little darker now, but we hope that by keeping your legacy alive and commemorating your life by sharing our stories as your patients, that others will know how a great man truly lives his life: by loving and serving others.