Appointments

We have survived our barrage of appointments and I am pretty sure we are both feeling better. Better doesn't necessarily feel like the right word, but I am going to use it. Are we okay with the fact that our son is not expected to live, NO, but are we making it through each day and have some good moments, yes. It is funny, how you start to feel guilty about the good moments or if you catch yourself laughing or smiling. Maybe funny isn't the best word to use either, but right now, nothing seems right. It is so hard to put things in words and feel like others are going to understand. We do get up everyday and go about our lives, somedays we would definitely rather stay in bed, though neither of us sleep very well. We do laugh and smile, it is hard to be around Sean on a daily basis and not laugh. For those have not gotten that experience, I hope you get to someday. But there is rarely a time when Ryan is far from our thoughts.

For me, one of the hardest things right now is that I don't really feel many movements. Any movements I feel are so minor that I often wonder if I am imagining them. I keep hoping that at any time, the movements will start to feel stronger and that they will get to the point that I can share them with Scott. Unfortunately, the doctor has told me that it may not happen simply because Ryan's arms and legs are so underdeveloped. As a mom, I crave those feelings and that connection.

There are not many updates from our appointments. We got to have another sonogram when we saw the perinatologist and it was wonderful to get to spend some time checking out Ryan. He was more active this time, so we got to see more. He still does not want to cooperate and give us a good profile picture. Scott thinks his stubborness comes from me. Nothing had changed in regard to the developement and size of his chest cavity, so the progonosis remains the same. The doctor said that she is 95% sure of the diagnosis of TD and essentially, it is a 100% fatal. I hate that word! They did notice one new thing and that is, it appears that Ryans fingers are fused together. Doesn't change any outcome, just new information.

After meeting with the neonatologist from the palliative care program (almost like a prenatal hospice), we both felt more comfortable about how things will be handled at the hospital. We were able to share our wishes that Ryan be kept comfortable and not be poked and proded, and that we get to spend as much time with him as we desire. He will not be taken to the nursery or nicu and will be handed to Scott at delivery. Since I will be a scheduled C-section, it will be a little while until I get to actually hold him, but I will be able to see him and talk to him. It feels comforting to know there is a team that is going to support all of our wishes and work towards giving us the best possible experience for what we will be facing.

The final appointment of the week was this morning with my OB. It also went well. Ryan's heart rate is in the 160s (I love hearing his heart beat!). We were able to have a short talk so that she also understands that our goal is to simply be able to spend time with our son. We are hoping to make it to 36 weeks (I am currently at 22), so we have a road ahead of us. We know that parts of that road are going to be hard, but we are trying to focus on enjoying our time with Ryan, no matter how short that time may be.