Mary's Prenatal Diagnosis

Christmas 2016 was not the most joyous in my collection of yuletide memories. I was "great with child," but even more burdensome than my cumbersome belly was the weight of anxiety heavy on my heart and mind. We were two months away from our due date with Verity (FT18), and though I had learned much in the couple of months since our diagnosis, I felt I had absolutely no idea what to expect in the days and weeks ahead of us.

This year, we are grateful and blessed to be celebrating our 4th Christmas with Verity Irene. And while our everyday life now is characterized by an unexpected sense of "normalcy," I will never forget the uncertainty and angst that blanketed our holidays that year.

I'm sure Mary felt those emotions as well! She had a "prenatal diagnosis," if you will--it was revealed to her that she would carry a special child, too! Can you just imagine the uncertainty SHE felt?! Where and when would she deliver her baby? What would the outcome be of a pregnancy that from the outside looked to be illegitimate? How would she attend to the special needs of a child who would be like no other?

God's heavenly purposes are carried out in each and every individual, including the precious babies who have an "anomaly." It is true that some are called to heaven before even taking a breath on earth. And it is true that some get to experience life only for a short time. Our thoughts and prayers are with those families who are mourning and missing those babies. And we continue to pray for the ones who are still growing and for the mamas carrying them, waiting for the next chapter in their own lives to unfold.

From the Jacobson family to all of you--I wish you a merry Christmas. May you savor the quietness of the season and experience true rest...may you know the grace and peace that only comes from the real reason for the season.

P.S. If you or someone you know has received a prenatal diagnosis, I'd love to offer encouragement and support. 

From Diagnosis to Delivery - A Resource for Moms with a Prenatal Diagnosis

It's been just over 4 years, but I well remember that difficult season of life: getting a phone call from my doctor and learning the baby girl growing inside me had what was considered a life-threatening diagnosis (Edwards Syndrome, or Trisomy 18). The following days and weeks were a living nightmare. My husband and I prepared for our baby's burial, and I was pretty much a weepy, emotional mess. Thank GOD for online connections! After about a month or so of feeling overwhelmed by negative information, we were introduced to online resources that actually showed REAL families living with children who had the same diagnosis. My eyes were opened to the positive stories of hope, and I began to turn my heart toward the idea of a different outcome than I had been led to believe initially. 

Of course, this also meant I had a whole different set of questions to address! The learning curve was steep, but as I look back, I can see how incredibly far we have come. Now our Verity is almost 4 years old, and our family absolutely adores her. I just cannot imagine life without her! But I will confess I was terrified to be the mother of a special needs child, especially when I already felt overwhelmed being the mother of 8 other children. 

From the moment of our diagnosis to the beautiful experience of Verity's delivery, my pregnancy was an emotional roller coaster. And beyond delivery came more learning. I won't say it's an easy road, but I wouldn't have it any other way. And because of the JOY and HOPE we have as a family (which ultimately comes from Jesus), I am now in a place where I am able to offer a bit of wisdom and experience as a resource for moms who have a prenatal diagnosis and are drowning in a sea of emotions.

We have a new private support group for those moms! I also have a free guide, From Diagnosis to Delivery. Please help spread the word! This is a journey best traveled with loads of support!

Clubfoot Clinic Check-in

It has been over a year since we saw our orthopedic team, and so we headed to the specialty clinic early Tuesday morning. Our routine is to get a hip x-ray as well as examine Verity's feet, which were clubbed at birth. (You can read about the early treatments when she was tiny here and see some photos of the progression here. And this is the boots-and-bar phase we were in for awhile. Goodness, she looks so teeny tiny in these early blog posts!)

So, we will give an update on her feet first. I don't have a photo handy of her AFOs, which she has had for nearly a year now, but she has definitely outgrown them. (AFOs = ankle/foot orthotics.) She got the best use out of them when she was weight bearing, so in a stander or gait trainer or the like. When sitting, unfortunately her right foot (the "problem" foot that won't flex all the way) would sometimes get red spots, even though we've always been careful to take them off regularly and check. We had noticed her right ankle seemed just a bit tighter, and the measurements from the PT at the clinic confirmed this.

The good news is that overall, there really isn't much change with her feet, other than growth, obviously! So we have a new prescription for a new set of AFOs. The last ones took at least 3 trips to Hanger Clinic to get "right," and they still maybe could have been adjusted even more, but they worked! And the frayed velcro straps and scuffed bottoms were definite proof that we used them daily!

The doctor does not feel he wants to do foot surgery anytime soon, as long as we can continue getting AFOs that fit properly and allow her to work on weight bearing. This wasn't a surprise, as he had said he felt he had done as much as he could with the last tenotomy surgery (tendon lengthening for the Achilles). 

So that leads to the hips. Dr. S has monitored her hips since we first moved to Colorado in 2017. Verity first saw him when she was about 8 months old. Hip dysplasia is common for our little ones, and while Verity's tendons did need a release in conjunction with the November 2018 tenotomy, her hips have looked pretty good her whole life. 

This x-ray, though, showed a bit of a possible concerning trend. Because Verity has not been able to bear weight, isn't crawling, standing, walking, etc., her hip socket hasn't quite developed right. So on her left side, the femur doesn't necessarily stay well in place! For now, we have the hip abduction brace, shown below, which really is not as uncomfortable as it looks. It's soft and easily adjustable.  In fact, we were all pleasantly surprised when Verity calmed down and almost seemed soothed when we put her in it! (We wondered if perhaps it feels almost like being swaddled feels to a baby?!) She took a nap yesterday afternoon while wearing it. However, since we did not have a nurse on duty at night, we are going to play it safe. As you can also see in the photo, Verity often sticks her fingers in her mouth (which, by the way, is a nice developmental step--she usually seems to be rubbing her gums where teeth are coming in). While she has come a loooong way from a year ago when the only reason she put her fingers in her mouth was to stimulate her gag reflex, she still on occasion does manage to gag herself. With her CPAP mask on at night, we don't want to chance this happening before we can fully wake up and realize what's happening! Since her preferred sleeping position is on her right side, we will utilize the brace as we can during the day and during the occasional night when we do have a night nurse.

While Dr. S has been a pretty good provider overall for us, the way he worded some things seemed to indicate (probably unintentionally) his opinion regarding surgery should Verity need it down the road. When talking about her hip issue, he said if the femur comes out of socket and isn't able to be put back in, OR if she starts showing signs of pain, then--for any other child--surgery would be a given. But his opinion of the surgery seemed to be based on expected outcomes for the patient. His example, cerebral palsy clients, referred to the fact that their expected life span is much longer than for Trisomy 18 patients. Because of my tendency to give people the benefit of the doubt, I'd LIKE to think that his seeming reluctance to consider surgery for Verity may be based on what happened during her last surgery with him. Perhaps her reaction to fentanyl (which is now listed as an allergy on all her medical records) has made him gun shy to put her under again.

But...if our girl gets to the point where she needs surgery, we will make sure she gets it! And if Dr. S is reluctant to do it, we will find someone else willing to go forward. However, I'm hoping it will be a non-issue!