Hi, I’m Jessi. Wife to Jon and mom to the sweet and adorable, Jack. Jack was born in 2009 as a 23 week preemie, almost four months too early. He weighed one pound, two ounces. Due to his early birth, he spent 115 days in the hospital and developed hydrocephalus and cerebral palsy. Despite his challenges, Jack today is a very happy boy who loves walks, swimming, tickles, throwing balls, jumping on beds, and peek-a-boo. His giggle is infectious and his smile lights up the room. We live in Clancy, Montana. I write about our day-to-day, wonderful life at www.lifewithjack.com
Tell me about some of the background of what happened with having Jack. What led to the early delivery? What signs should moms be watching out for (if any)?
I should start out this conversation by saying that the chances of this happening to you and your pregnancy are very slim, to nonexistent. I don’t tell my story to cause anxiety or to add another worry to your plate. But, odds are you know someone who has a preemie and it’s always good to try and understand where others are coming from.
Here’s my story. Before having Jack at 23 weeks, 2 days, I had no idea babies could be born so early and survive. I mean, I had heard of premature births, but certainly not this tiny, this early. The symptoms that led to my emergency C-section came quick. I had dealt with bad, unrelated morning sickness, but beyond that, my pregnancy was going along quite fine. Then one night I woke up with nausea and pain in my lower back. I called the doctor first thing in the morning, went in, found out that I had a condition called severe preeclampsia and ended up being life-flighted to a hospital with a high-risk doctor and a neonatal ICU. I had a C-section upon arrival.
I had done everything right with my pregnancy. I was healthy, went to all my prenatal checkups, took my prenatal vitamins, got rest and read pregnancy books. This was one of those pregnancy situations that was completely out of my control, as they so often are. Science doesn’t yet know what causes preeclampsia in pregnant women, but it is when you get such extremely high blood pressure that your organs are at risk for shutting down. The only treatment is delivery of the baby. If left untreated, it is deadly.
Premature birth can happen for a number of reasons, so my only advice to moms is there is no reason you shouldn’t call your doctor if you are feeling “off”. Overall, I recommend a better safe than sorry approach when you are pregnant. It’s OK to have false alarms, to call your doctor a lot, and to tell them when you are not feeling well. Sometimes it is the very thing that can save you and your baby’s life.
For those that don’t know, what is the difference between a preemie and a micro preemie? What are some of the special risks that are involved with micro-preemies?
Generally, a preemie is any baby born before 38 weeks. A micro preemie is a special category for babies born before 28 weeks or weighing less than 2 pounds. Since Jack was born at 23 weeks and weighed 1 lb., 2 oz., he was easily in the micro category. These little ones do have some specific medical concerns. Since vital organs and systems are not near fully developed, specifically lung function and the body’s immune system, these tiniest of babies require extraordinary medical intervention and care in the hospital at least until their due date and sometimes beyond.
What is something that friends/family members should be aware of if their friend/family member delivers early, has a child with special needs, etc.?
When someone has a premature birth or gets a diagnosis for one of their children, they typically get inundated with information – from the doctor, from therapists, from the internet… you get the idea. Sometimes it feels like information overload and it is easy to get overwhelmed and scared. Oftentimes, the best thing friends and family can do is keep all the advice, questions and concerns to a minimum and just simply say “I’m here for you and you can do this.” Many preemie parents feel overwhelmed and scared about the future, so there’s nothing like a friend who comes alongside you and says “I may not understand everything you are dealing with, but I want you to know that I care and I will be here for you every step of the way.” And then they show up with an encouraging letter in the mail, a text, a gift card, a “I’m taking you out for a couple hours” or “I’m dropping dinner off at 5!” Just the steady presence of friends and family is often assurance enough that you can get through anything.
For those that deliver prematurely what were some of the best resources you were able to find to help you start on this journey?
When I had Jack seven years ago, I went online to find help and I could hardly find anything. Just a few non-personal chatrooms about prematurity and of course, doctor Google. Nowadays, there is a more well-rounded selection at your fingertips. There are countless Facebook support groups, incredible blogs written by preemie parents or neonatal nurses, and all the medical information that you could ever want! After I started writing about our story, I eventually found the best support from other moms who were also experiencing prematurity. They let me talk, ask questions, vent, and I did the same for them. Of course each preemie is very different, but there’s something about the NICU experience that binds. I’ve heard that many moms find great comfort in their hospital support group or local preemie organization. Likewise, I can truly say that my online community was and continues to be a great comfort to me. I went from not knowing any other parent of a 23 weeker, to being connected to quite a few around the world. Such a weight was lifted off my shoulders when I knew I wasn’t alone.
How did you come to terms with having to deliver early? How did your husband come to terms with you and your son almost dying? Where did you find your strength to cope that entire experiences?
I’ve heard that when something traumatic happens, you can either sink or dig deep and find that well of strength to swim. For the most part, we have managed to find that strength. First and foremost, my husband and I have a deep faith that really sustained us through what is probably the most traumatic experience we will have to endure. But it was not easy by any means. The first year or so we were in shock and operating on auto-pilot. I was constantly on edge and most likely suffering from post-traumatic stress. We were devastated at the turn of events and just starting to grasp how our life would now look, both amazed that Jack survived, but coming to terms of raising a child with significant medical needs. We couldn’t get too caught up in the what-ifs and had to take things hour by hour, even minute by minute sometimes. Eventually, I came to terms with Jack’s early birth, but it took TIME. As cliché as that sounds, it took years and a lot of distance to come to terms with everything that happened. I started writing, which was the cheapest and best form of therapy for me. And I have to give a shout out to our family and friends who jump right into action, again and again, when we need them most.
What struggles has Jack faced thus far? What have been some of the most difficult and some of the most rewarding moments in his 7 years?
Jack has had to endure more than most people will ever have to. He’s had a lot of surgeries and seen more than his fair share of hospital walls. Those are the difficult moments and his medical conditions certainly make life more challenging. But I am continually in awe of his sweet spirit, his zest for life, his will to live. I always say that I’m the luckiest, because I’m Jack’s mom. Some of the most rewarding and magical moments are when his hard work pays off (taking his first steps was a HUGE deal, for example) or when he reaches a milestone like starting kindergarten. We spend a lot of time being amazed by him. There’s a lot of laughter and joy in our house. I know all parents are like this, but you can’t be around Jack and not notice his incredible spirit and be reminded about what matters most in life.
As the parent of a child with special needs, what advice would you have for other parents when they approach the topic with their kids? How should they reacts when they first see differences? What should they say/not say?
This is such an important question! Thanks for asking. Sadly, we have noticed children (and adults) rudely staring and pointing at Jack in public and I always wish they would just come over, say hi, and introduce themselves. I believe there is nothing wrong with polite curiosity, so ask a question! Questions that come from a kind and genuine place are welcome, even encouraged! If anything, parents should model in word and action that those with disabilities aren’t something to be afraid of or pitied. They are worthy human beings who deserve to be here just like the rest of us and have something awesome to contribute to this world.
When Jack started kindergarten, we knew his classmates would naturally have questions about why Jack is, well, Jack. Jack has unique behavioral quirks, he limps when he walks, he doesn’t talk. My husband, bless him, had a wonderful idea and ended up writing a superhero-themed book to introduce Jack and his medical challenges to his classmates. Each kid got a copy. After reading the book to Jack’s classmates, we opened it up for questions. It was so enlightening! The kids asked things like “why does Jack use the old man chair (wheelchair) sometimes? And “why does he make that noise?” We were able to explain Jack in a way that kids could understand and teach the important lesson that just because someone is different doesn’t make them any less than you or me.
Beyond letting your child ask questions and talking openly about differences, I am a big fan when parents model inclusivity in their own lives. Actively include those with special needs at birthday parties, play dates, and life events. Heck, they are usually the life of the party.
How do you keep your marriage strong when focusing on your little guy?
Oh boy! Off the top of my head, I can think of nothing better than the hard to plan, but oh so important, date night. Especially when dealing with special needs, it is extremely difficult to find a babysitter. From experience though, when you find a good one, they are worth their weight in gold. Here, take all my money!
Beyond making time for each other, a really important thing for our marriage has been encouraging and making room for each other’s gifts. A few years after Jack was born I had a dream to go back to school and get my PhD. Jon only encouraged me in that. I find that when we are both personally fulfilled and chasing dreams, whether in work, family, friendships, or callings, we are much happier. When we want the best for each other, when we sacrifice for each other, when we put each other first and make room for each other’s gifts, our marriages are only stronger. Of course this requires a lot of flexibility, coordinating schedules and a give and take, but it’s something we’ve consciously done since Jack was born.
If you could communicate something to every mother out there, what would it be?
Go with your gut, but be gentle with other mom’s choices. Oftentimes the things we are worked up about or bent out of shape for don’t really matter. Simply, the mommy wars don’t matter much when some are dealing with medical issues or a new diagnosis. We are all just doing our best!