Sunday, July 31, 2016

Maya Journey: Hope is Never Lost (part 2)

Recently on Maya Journey.... :)

***This is the other side of the medical story, the side filled with hope, strength, kindness, charity, and love, supplied by our amazing medical family at Maternal Fetal Medicine and many others at Geisinger in Danville and Forty Fort.*****

I talked about our introduction to carrying a baby with Trisomy 18, a chromosomal disorder lovingly categorized as incompatible with life.  (yer MOM's incompatible with life!...sorry, reflex).
That was a very hard time in our lives.  A few weeks after that first appointment with my regular OB (the one with no hope), we met with the MFM specialists in Danville at that fancy hospital I mentioned.  We went for several appointments including an ultrasound, echocardiogram, and discussion with a genetic counselor.  This would turn into an all-day event, that I was not super looking forward to enduring.

It has now been a few months since that day, and there were many other subsequent epic doctor days since that one, but that is when things turned around, and I will explain how.  Before I became a stay at home mom I worked in a few different residential treatment centers as an in-training therapist (the psycho kind;).  Each patient/client had their very own treatment team, a group of multi-disciplinary individuals that would meet both individually with the client but also as a team to discuss treatment plans that fit the goals and needs of the client.  Since working in that environment I often thought that medical treatment should be the same way.  Well, shockingly that is the kind of medical care we were stepping into when we started seeing our new doctors in Danville, and not only that, they really saw us as people, like the human kind, not the piece of flesh on a conveyor belt that needs medicine and then it will go away kind.

I remember vividly the look on Dr. Bringman's face when I shared my experience about my OB.  He gently explained that my OB and many doctors say things and are not speaking from experience, and he told us he wanted to apologize on behalf of that doctor, who really just didn't know what she was talking about.  There were several faces in that ultrasound room as we watched our baby girl on the screen and Dr. Bringman explained that we were already her parents, we were already loving and taking care of her and that she was ours.  We felt so much love coming from everyone in that room.

Janelle was our ultrasound technician when we found out we were having a girl and for just about every appointment after that.  She came into the room and gave us big hugs and told us that she had been thinking about us since that first ultrasound and had gone home and started researching because she just wanted to help us in some way.  I had actually thought a lot about her as well because she witnessed our tears of joy and excitement when she told us we were having a girl (finally!!!) all the while she was seeing that our baby girl had some major issues and then witnessed the tears as we cried when the doctor explained that our baby girl had serious health problems.

Mindy and Allison (the social work hospital gurus) also were very concerned with how we were handling the news and both that day and for several months following, would bend over backwards to love and support our whole family through this journey.  I can't even begin to share all that they did and continue to do for us, we just love them so much.  Even on that very first day Mindy was paging doctors and taking us to each appointment and taking notes for us and asking questions for us that we wouldn't know to ask, and explaining things to us.  She even showed up to one appointment with lunch for us! And theeeeeen I guess after we left our appointment with Dr. Bringman he had shared with her how he wished they could take care of my regular OB appointments there as well, so guess what...Mindy made it happen! (That should really be her name- Mindy MadeitHappen). Mindy was able to line up an appointment with Dr. Fisher so that I wouldn't have to go back to no hope land!

My views at our echocardiogram (fancy ultrasound just of Maya's heart)

So many times Nate and I have shared with our friends and family what a difference our medical professionals made for us in this journey and that it would have been a very dark path without them (and I haven't even mentioned all of our angel nurses).  At my last echocardiogram with our cardiologist Dr. Golten, I told her that I was actually going to miss our appointments and seeing her, she agreed and gave me a big hug and a kiss on the cheek and told me to stay positive and that everything will be ok.

One of the places Nate and I go in times of trouble especially, is the temple.  The temple is a dedicated holy place where we can receive comfort, inspiration and peace.

(This is the temple where Nate and I were married)

We go in the temple feeling burdened and we leave the temple feeling strengthened and like "hey life isn't so bad, we can do this."  I'm saying this because we felt similarly when we went to these long appointment days.  We would show up feeling burdened and scared, and we would leave often after 5-6 hours of pretty much all rough news appointments feeling somehow lifted and strengthened.  We really felt so much love from all of our doctors, technicians, case workers, you name it.  I suppose there were heavenly, unseen angels (and still are) helping us along, but they certainly felt to be out-numbered by the ones in those offices.

"I have spoken here of heavenly help, of angels dispatched to bless us in time of need. But when we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day. Some of them reside in our own neighborhoods. Some of them gave birth to us, and in my case, one of them consented to marry me. Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind." (Jeffery R. Holland, "The Ministry of Angels").

Truly all of our medical support team was angelic for us and will forever be in our hearts.

More next time...


  1. I'm so saddened to hear of this news, but we know this will only be for a moment and you will have her again to raise as a whole, complete and perfect child. You are the 3rd couple I know to have had a Trisomy-18 baby within the last couple of years. We love you guys!

  2. Thanks for sharing this amazing journey with the angel who has come into your family. Sending much love!

  3. Love you guys, love your mamma jokes :-) and Love that you share this with us. I so wish we lived closer! Hugs to your whole family. Love you guys Love the Berrett's