Right before Christmas we were blessed to have an incredible opportunity to "see" Josiah on a 3d ultrasound. All of the details were taken care of by one of my dearest friends Melissa who got in touch with an organization called Sustaining Grace (http://sustaininggrace.org/index.html) & 4d peek of cleveland http://www.4dpeekofcleveland.com/index.html to make all the arrangements including paying for our session. It would have been something that was outside our means to have done so it was a double blessing to have the ultrasound done and not have to worry about how we were going to pay for it.
Josiah was feeling very cooperative for our ultrasound and we got tons of great pictures of him. He was wiggling and squiggling all over the place and it was great to let our kids and families "see" him in that way. I can feel him jumping around all the time, but obviously it's hard for our children to understand that although we don't know what the Lord's plan is for Josiah he is here with us now....alive and kicking! So it was really special for them to be able to see him and try to get a little bit of understanding, as much as a 4 and 6 year old are able. It's hard for Derek and I to always know what to say to them, but we just try to prepare them as best we can for what even we ourselves don't understand. Josiah's life is completely in the Lord's hands. We just don't know what to expect.
I have been feeling much more hopeful about Josiah's impending arrival. I still know that we may not have years, but only minutes or hours, but we would be so thankful for any time we can have with him. I am still amazed at some of the stories in the Trisomy facebook group and online telling of the resilience and determination of so many of the T18 babies and their families. So, come what may, I am determined to have hope for Josiah. I am not wishing this pregnancy away, eager to get to the end, because therein lies the great unknown, but I am determined to sit up and take notice of each of his kicks and wiggles and rejoice in his life.
We are at about 35 weeks along right now. He still seems as strong and as active as ever which is so encouraging. I have noticed he's kind of changed our evening routine a little bit. He still starts moving around when I finally sit down on the couch in the evenings but then he settles down. I might get a little kick or two from him when I go to bed, but I think he's settling in for the night since that used to be his seriously active time. These past couple of weeks I have noticed that he has been waking up to dance in the 5-6am range instead. I think he's becoming a morning person :) ha ha ha
As I look over these pictures of Josiah, I sometimes find it hard to think that there is anything "wrong" at all with him. This pregnancy reminds me of being pregnant with Addison....he won't let me forget he's here, just like her! He looks just perfect in the pictures we got. He looks just like our other kiddos and he even looks plump! I know what the amnio results showed, confirming the Trisomy 18 diagnosis and we have been to the cardiologist 4 times to have hour long echocardiograms and ultrasounds done of his heart so I am not in denial about what Josiah is dealing with but looking at his little face just makes it hard to believe sometimes.
This past week we did have a meeting up at Akron Children's which was difficult. We needed to put together a birth plan, outlining as much as one can in situations like this, what we would or would not want done in various scenarios. How much intervention do we want to happen if Josiah is born alive but is struggling etc... It was hard to think in those terms. We wanted to have some kind of an idea to let the doctors know our wishes for Josiah. We want to give him every chance there is, but at the same time we don't want him to be in pain or struggling to stay with us if that is not what the Lord has planned for him. I am praying that Josiah will make it clear to us what we should do.
So, things will be changing here in probably about a month or so. I feel like we have been in a holding pattern here for the past couple of months and it has been nice. He has been snug as a bug and as long as he's been kicking and moving I haven't found myself worrying, which is amazing for me! Josiah's due date is February 11. Each day that we get to have with him is a blessing and a miracle, so we wait expectantly for the Lord's will in his life and in ours. I still am praying for time with him.... even just a little. So please continue to pray for us. Pray for Josiah, that he will be strong and that the Lord will help us to help him when he is born.
Pray for our children, Braden and Addison. It is hard to know what to tell them sometimes. They know that Josiah has a "boo-boo" on his heart, but we can't tell them for sure what that means in terms or his living or dying and that is hard for them, I know. When we first found out that Josiah had Trisomy 18 we were told by the doctors that Josiah would more than likely be stillborn or live just a few minutes. When we told them about Josiah's heart and his boo-boo we sat down with them and talked to them and tried to prepare them for what we understood would be the scenario...that baby Josiah would probably die and that just like baby Owen we would not be bringing him home.
Over the past couple of months I have found that there are so many other scenarios with Trisomy 18 that we just can't be sure of what will happen. It is hard to prepare Derek and I, let alone a 4 and 6 year old for so many unknowns. We can't say that Josiah will die, we could actually bring him home! How amazing would that be? And what a reminder for us that Josiah's life is truly in the Lord's hands....whether it be for minutes, days, or years. Anything is possible, so please pray for the kids that they might be comforted and have understanding as we all walk this road together.
Pray for Derek and I as we await Josiah. We have hope for some time, but know that we need to be accepting of whatever the Lord has willed for our family. Pray that we do what is best for Josiah, pray that we are open to what Braden and Addison need and pray for our families....grandmas, grandpas, aunts, uncles, cousins and friends as we know that hard days may be coming. Pray that we would find comfort and peace and even joy in the plans the Lord has for Josiah and our family.
"For I know the plans I have for you, declares the Lord, plans for peace and not for evil, to give you a future and a hope." - Jeremiah 29:11
Thank you for your constant prayers!
Cat, Derek and family