Saturday, March 14, 2015

The Blake Story: Part III

November 5, 2014

Hey Family and Friends- 

Thanks for all the thoughts and prayers that went with us today... and for the texts, calls and emails. We continue to be blown away by how well we are loved, and how supported we feel in every step. 

Today was our every 4 week appointment with Maternal Fetal Medicine (MFM) at Vanderbilt. This is a group of doctors specializing in fetal medicine, and who have been following us since 20 weeks, and will follow us and Blake until his delivery. All in all, our appointment today went well. There was no new news, and things on his ultrasound seemed to basically look the same as last time. I can see how this could seem like it might be discouraging, but it really wasn't for us- we both went into this just hoping that we wouldn't have new hard things to digest. The measurements of his bones all continue to be short. His head circumference is actually completely normal for his gestational age, and his chest circumference is still small. They weren't able to get great pictures of his ribs today, but they don't seem concerned, as the chest circumference is the most important measurement. His heart is strong, working just as it should, which we are thankful for. His heart is still taking up a larger percentage of his chest than it should, and this is what is going to be his biggest challenge, and one we cannot know anything about until he takes his first breath. This still feels just as scary, but we are thankful there were no new scary findings. The MFM doctor didn't have much to report as things are basically the same, and his words were to "stay the course". I am going to have my next ultrasound in 4 weeks, which makes it happening on December 1st. I am also going to continue to be followed by the midwife practice (who delivered Jane, and who I've seen throughout this pregnancy). They are telling me there is no reason not to think that I will be able to carry Blake to term and have a normal delivery (however, as we know, this can be very subject to change even with the most normal of babies/pregnancies). So far though, everything pregnancy-wise has gone great, and we are truly very thankful for that. 

The biggest part of our appointment today was spent meeting with the neonatologist, Dr. Walsh. He is the same neonatologist that consulted with us in our first 20 week ultrasound at MFM, and from that first time we interacted with him at that appointment, we both really liked and trusted him. He is the chief neonatologist at Vanderbilt, so he is incredibly experienced and intelligent, but is also very gentle and kind. We had a lot of confidence in him from the start, and were super grateful he was the one we were able to meet with today. He sat down with us for probably 45 minutes, and just talked through what things might look like for Blake after he is born. We went over the different scenarios that could play out, depending on Blake's lung size/capacity, and what steps would be taken in each scenario. It's a lot of details, and not easy to talk about, but there was something nice about actually getting to talk out what that actually will look like. We both feel very confident in his knowledge, and the plan we discussed, and both feel VERY at peace that our little guy is in great hands. He told us several times that he was so sorry for what we were going through, and even asked us about Jane, and how we plan on processing this with her eventually. We can't say enough great things about him, and how thankful we are that he has been the one involved in this process with us. He even personally walked us over to the NICU, so that we could see what one of the rooms looks like and all the equipment that could be a part of Blake's care. He also talked with us a little bit about the genetic testing that will be done after he is born. They plan to draw blood off of the umbilical cord (so they won't have to stick him), and send that away for genetic testing so that we can know if this is something we somehow both were carriers for and passed down to Blake (a pretty small chance of this). They will also do an X-ray after he is born at some point, which he said is also very helpful with the diagnosis of what exact skeletal dysplasia this is. There is still a lot of unknown in this department, but I don't feel like its something either one of us are very concerned about at this step in the journey. I do feel like they will provide us with more answers and information when they can, which will be after he is born. 

So, like I said, it was fine. Not easy, not super hard. Rob and I were able to have lunch together afterwards, and debrief a little bit together. It's really hard to walk the path of "if things don't go well".... but it's kind of nice to actually walk out in a factual way what that might look like. It didn't feel like we walked away today with more unknowns. Don't get me wrong, it still feels scary and unknown... but it was nice to break that down a little bit. 

I'll end this like I do every time... we are so thankful for you all. For our community and support system that is carrying this load with us... praying for us when we hardly know what to pray... making our lives seem as normal as possible. We are thankful for each other, for how we've been able to love one another as well as possible, and for also giving one another grace when we fail to do that. I really feel like we are on the same page, and I can't imagine how much more difficult this could be if we were not.  And as always, we are incredibly thankful for Jane- for how strong and healthy she is, and what a source of life and joy she is to us both. 

Thanks already for how I know you will continue to pray for our family, and think of us as we take each day as it comes. I really think this is only way to deal with things.... thinking two months (or even two days) down the road seems impossible to handle at times, but just today seems very do-able... You can keep praying just like you have- all the specifics I've talked about before remain just the same, and goodness knows this email doesn't need to be any longer! 

Much Love. 
Rob, Lara and Jane

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