Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, June 25, 2013

Dear Doctor:

Here is a letter that I sent to my OB's office after Owen was born.  You may (or may not) recall that I switched docs mid pregnancy so that O would be in the same hospital/health system as his siblings and pediatrician.  I felt like it was important he hear from me afterwards to let him know how it was going...

Dear Dr. _______:
I apologize for how long this letter has taken to write.  I intended to get it to you months ago, but four kids sure take up a lot of my free time!

An update….Owen Henry was born at 38 weeks 5 days on December 28, 2012.  He weighed in at 7 lbs 7 oz (our biggest baby!).  And somehow he already turned 4 months!  Time sure does fly!  At his check up, he was 15 lbs 10 oz. and 25 inches.  He is currently meeting most all his milestones; loves to smile and roll around.  Medically, he has some hearing loss, believed to be due to fluid from his tiny ear canals.   He is getting temporary hearing aids this month and we will schedule him for tubes once his ears are large enough.  His muscle tone is a bit on the low side, but other than that, he is not any different that his siblings.  We have been so blessed to have another healthy child!

First, I would like to thank you for how you all handled the time during our diagnosis.  I cannot imagine that this is a part of your jobs that you particularly love.  To find anomalies during an ultrasound and still continue on with your work is quite admirable.  Although I began to recognize that something was “off” I felt very comfortable knowing that information was being gathered to care for baby and I in the best way. I apologize that the name of the ultrasound tech has escaped me, but the day the nasal bone was not seen, particularly, was one that I appreciated her professionalism, compassion and kindness.  She was always attentive at appointments and it is appreciated.

Secondly, I very much appreciate how you approached the suspicion of the Down syndrome diagnosis with me.  I have heard horrific stories from my many new friends about their experiences during the time of their prenatal or birth diagnosis.  I have been appalled with some of the conversations they’ve been a part of and sad that they were not provided the same medical care I was.  In reflecting on our conversation I believe you were giving me options without saying them because I believe you knew me well enough as a patient that termination would not be an option.  For that I am grateful.  This was a challenging season in my life and I am incredibly appreciative that I did not have to also deal with the awful reality that seems to be more common than I fully understood in a T21 prenatal diagnosis. 

I also appreciated the assistance of the staff as I switched practices to better serve Owen.  I am so very thankful that he did not have any further medical concerns arise, but for the hearing/audiology alone, it has made for an easy transition within the system.  Owen did spend 6 days in the NICU due to pulmonary hypertension and we were glad to have the consistent care with the NICU doctors and our pediatrician.  Not having a headache with the transition of my paperwork and records was very nice.

Finally, I wanted to extend my help, support and/or guidance to any moms who may find themselves in the world of Down syndrome.  I have found the community of moms who’ve experienced what we have has been invaluable.  If you ever come across a mom that would like or needs support, I would be happy to talk with them.  This has been a life-changing few months, but life is a lot less different than I originally expected.

I began blogging shortly after our diagnosis and have kept it current.  If you would like to see the diagnosis and birth experience through a family’s eyes, I’d encourage you to check it out.  Please feel free to pass the blog address and my contact info to anyone that you feel may benefit from it.  I have many DS blogs linked on my page, too.

My life in pregnancy years has come to a close (at least I think it has!) and I am grateful for the support I received through your practice over the years.  After my first miscarriage 10 years ago, I truly believed I may never get to experience motherhood.  Now, 4 kids later I am so thrilled to have healthy, beautiful children.

Me :)

Monday, June 17, 2013


So again I am beginning a post with apologies for the long break. I will update you on life in our world and then end with a photo bomb for all your patience.

Update--nothing, really! It is so good to say that. In terms of Owen, his only current issue is constipation (sorry buddy!). We are trying some foods because he is ready. He screams at dinner while we eat unless he gets something to snack on (prunes and applesauce lately). And he grabs at food if he is in striking distance. It is always nice to see him reach these milestones!

The other kiddos are doing well. We've adjusted to summer scheduling and it is great having them home. Colton appreciates it a lot; apparently I am not as amusing all day as the older ones are.

Owen will be 6 months at the end of this month and I can hardly believe it! We have been in the DS community for nearly 9 months. I wouldn't say a lot had changed, but I feel as though I have changed. In a very good way. My heart and mind are open to so much more.

To that end, I have been busy working on several projects. The first is putting together a book of sorts for new parents to the DS world. A new fabulous friend from down under is working with me and it has already been quite a journey. Collecting stories from moms all over the world about their experiences with DS has been an emotional adventure and I cannot wait to see how many families we are able to support in their own walk with Down syndrome.

The second project is something that has really been one that has been on my heart. A friend approached me about creating a group to support parents in, especially, the diagnosis phase of their path. There is just too much poor and misinformation out there around the realities of DS. In many cases the medical field is unwilling to supply parents with accurate information. In other cases, there is little to know information given at all. We are preparing to equip parents with accurate information and help them understand what life with DS is really like. I will reveal more details once we are ready, but I am so pumped to be using my energy towards such a worthy cause.

House building has proven to be more time consuming than I originally thought. We are busy making some decisions and hoping to complete the planning soon so we can get digging. More to come (hopefully soon!).