30 Week Doctor Appointment & Ultrasound Update

I want to start by saying thank you to all of our prayer warriors, well-wishers, and those who have simply kept us in your thoughts and close to your hearts. I know so many of you have prayed hard for Silas and for us, and today we really felt it. I wasn't really expecting anything new to report from today's appointment, but nothing really goes exactly as planned (another thing Silas has taught me).

The doctor we typically see was at a delivery so we ended up seeing a different doctor. One who is very familiar with our current situation, but we do not see regularly. I was not super excited about this, but what a blessing it turned out to be. 

We are still measuring at 32 weeks, which means that fluid levels are the same as they were 2 weeks ago. This is such positive news for us! However, I was warned that levels can rise very rapidly so I need to be aware and on the lookout for any rapid growth. 

It gets better... 

We had a spur of the moment ultrasound today so we got to see our precious boy! The doctor wanted to check fluid levels and see how Silas was doing. I am so incredibly thankful that we were able to see Silas today. The Doctor says I have mild Polyhydramnios (almost moderate), but better than he would expect. However, the doctor did express concern about the umbilical cord. There seems to be large knots and loops that weren't there before. The best way to describe it is that it looks like a large, very fat, pretzel close to where it attaches to Silas. A while back the perinatologist said that the umbilical cord was interesting, but nothing to worry about. It since has gotten bigger and changed some, but it doesn't really change anything so we aren't going to worry about it. 

I mentioned to some of you that Silas was not able to bend his right arm and it was fixed in a fully extended position. I could often tell when he would move his right arm because it was a very stiff/stretching movement and sometimes a little painful if I was in a certain position. I haven't felt that for the past couple weeks.  So, I asked the Doctor to look at his right arm and tell me if it was still fully extended... to our surprise, it's not! Silas was bending and flexing his little arm for us! This news in no way changes the diagnosis/prognosis for Silas, but it is wonderful to know that he is able to do this. It feels so good to see he has made some positive progress and I got to have a proud mama moment. After receiving what feels like nothing but negative news for the past 12 weeks, this little bit of positive news feels pretty darn good! 

The doctor also mentioned that Silas looks really good compared to other T18 babies he has seen. A little on the small side, but good. I don't know if he was saying that to make me feel better or if he really meant it, but it made my heart very happy and very grateful. I didn't expect today to be so emotional. I feel so happy to have received good news today, but also very heavy hearted because it doesn't really change anything. 

After the appointment, Ezra and I went for a walk and he expressed how glad he was that Silas could move his arm now, but was curious about how and why that had changed. He also said that seeing his baby brother today made him feel jealous that Silas has T18 and other babies don't. Even at his young age, he goes through many of the same emotions Karl and I do. I am trying my best to guide and carry my family through this, to stay strong, and relinquish control. It hasn't been easy, and I have had to learn a lot along the way, but every day I try. 

“Learning is a gift. Even when pain is your teacher.” - Maya Watson

206 Days and Counting {29 weeks + 3 days}

The other night I was laying down on the couch and the strangest thing started to happen. I had my hand on my stomach feeling Silas move. I do this often, but this was different. I was surrounded by darkness and complete silence. The longer I felt Silas the more I could start to make out every inch of his body. I could feel the bones in his legs and arms, his head, and even his tiny nose. I found myself in complete awe of the amount of detail I could feel. I felt so connected to him and I was certain I knew exactly what he would look like at birth. A part of me felt afraid and the other part found this experience beautiful and calming. Then I came to a point where I was feeling his tiny bones, stroking my finger over his little leg and I felt something that shook me to my core. I felt a tail. I was so confused because I knew that my precious boy couldn't possibly have a tail! I pulled myself out of the darkness and took a second look. It was a snake! A baby ball python was resting on my stomach. I quickly grabbed him and tossed him off. I stood up and looked at where I was laying only to discover another snake. I quickly became convinced there were others around me and just when I was about to start looking for them... I woke up. It was all just some beautifully twisted dream and I was so glad it was over. It was all too real and frightening for me.

For the most part the past few weeks have been enjoyable. I was having a lot of anxiety trying to find the right outfit for Silas. Most mothers can easily find a cute "take me home outfit" for their little ones, but for me this was very challenging. With the constant thought that this may be his one and only outfit, on top of the task of finding him something special, comfortable, and cute in preemie size... it was hard to find something that felt perfect, but I finally did!

This tiny grey and white stripped onesie seems so simple, but there is one small detail that made it seem perfect. There is one single red button that will rest over his heart and if there is one thing I know about our Silas, it's that he does have a strong heart. I knew it had to be his the moment I laid my eyes on it. It seems so silly that something so small (a tiny red button no bigger than a pencil eraser) brought me much needed relief.

As of late, little things have had the largest impact on me emotionally. Things like seeing that someone had shut the door to the nursery was enough to bring me to tears. While other things like the 45 minutes of intense movement from Silas on Sunday brought so much joy because he can go days with very little movement. I was lucky enough to share that special time with Karl and Ezra.

I often sit in the nursery and stare at the large mural I painted before the T18 diagnosis. I sit and wonder if Silas will get to come home and see it. I think about the joy and excitement I felt while I was painting it. The flooding of happiness I felt because we were finally going to have another baby after a long time trying to conceive followed by the pain of multiple miscarriages. I was already so in love with Silas. I have often questioned whether I would have painted it knowing the diagnosis a head of time... I would have done it again in a heartbeat! This diagnosis doesn't make me love Silas less it makes me love him more. Even though he may never see it (but I pray he does), it is just another expression of my love for him.