25 weeks pregnant
This has been a very hard update for David and me to write. The past few weeks could best be described as a time of “information overload.” Every doctor’s appointment is full of so much detail and such heavy material.
We met with our OB on March 4th which was about three weeks since our last doctor’s appointment, an appointment which was encouraging (see update on 2/15/15). We had allowed ourselves to start to think (and hope) that we might have more time with John. We had heard of some babies with Trismony 13 who were 2 years old, and older. We had allowed ourselves to start to think of things that having extra time with John would mean (decorating a nursery, being able to have him come home, etc.). Unfortunately, at our appointment on March 4th, we were told to expect, at best, a week with John. This was devastating news for us.
Then, last week we met with a new perinatologist who performed the most in-depth ultrasound we have had. He was able to get a closer look at things and, as he explained John’s “complex heart condition” combined with all of the other complications of Trisomy 13, he told us that our time with John would be “very short.”
David asked him point blank whether "short" meant "weeks, days, or hours”? He responded “hours.” We appreciated his honestly and his delivery, but it is amazing how quickly the previous doctor’s comment that we might have a week with John seemed like “good news.”
Despite this hard news, and the challenges we are having to accept that all of this is really happening, we can still sense God’s goodness in so many ways. One of our constant prayers has been that The Lord will put people in our lives at the right time for our journey. I believe that He is answering that prayer by giving us the discernment to know who to talk to, and at what time to talk with them, during this journey.
For instance, last week I was blessed to meet with a woman who just gave birth and lost her daughter to Trisomy 18. I cannot tell you how thankful I am to have the chance to meet with her when I did. She was so helpful and encouraging to me…and her story is such an inspiration to me. She has a very deep and strong faith that carried her through her pregnancy and it has continued to carry her and her family through what has been, no doubt, the most difficult experience of their lives. She was gracious enough to not only share her story and their path with me, but also listen to me and what we have gone through.
In light of the prognosis for John, we feel like it is time for us to start thinking through a lot of details that we were hoping we could delay discussing. As a first step, I reached out to the nurse at my doctor’s office to see if there was anyone at Kennestone Hospital that we could meet with to talk about our birth plan and meeting with a neonatologist.
The sweet nurse at our OB’s office called me back the same day I called her and she got me in touch with a “Labor and Delivery Bereavement Education” nurse at Kennestone. The nurse took my call the same day and spent more than an hour on the phone with me discussing some of the decisions that we will have to make on John’s behalf as well as what the hospital will provide for our family in the way of care when we are there for delivery. It felt so good to talk to her because I could at least think a little bit ahead and start to think about the future a little bit more…even though I do not want to get too far ahead of myself.
One of the most consistent blessings throughout all of this has been the ever-present support, encouragement and love of our family and friends. Each note or message checking on us, each phone call, each dinner, and even the willingness to allow me to ramble on the phone about how I am feeling on any particular day is a blessing that both David and I continue to experience as we walk along this path that God has laid before us. Even your willingness to read this far in my rambling update means the world to me. :-)
For now, we are trying to make the most of each moment that we have with John. He is kicking all the time now- even to the point where I can see my belly moving and David can feel him! With each kick and movement, I am reminded of the love that I have for John and the blessing that he is in our lives…even in the midst of all of the sadness that runs parallel to the joy of those moments.
Without a doubt, God continues to be so good to us and provide us with the strength that we need for each day. In every moment of sadness and frustration, He is there. In every doctor's office where you would expect fear, He provides peace.
David's favorite bible verse says- "Trust in the Lord with all of your heart and lean not on your own understanding. In all of your ways, acknowledge Him and He will direct your path" (Proverbs 3:5-6)…We know that we are on the path that God has laid before us. We take comfort in that. Our job is walk the path He has laid before us and know that He will continue to be faithful to protect us, strengthen us, and direct our path.
We are thankful to each of you for your willingness to walk alongside us by lifting us up in prayer and just by being there for us. We love you.