It didn’t come as a big surprise at our 30 week appointment yesterday when the doctor told us I am measuring at about 35 weeks. I have definitely been feeling crampy, lots of pressure and like my tummy is about to burst. He said this is most likely due to our baby not swallowing correctly and me having an over abundance of fluid. He isn’t very worried about it…I however am. Because of this, he said he expects me to deliver within the next few weeks. I am not ready to face the reality of the unknown…not ready for the very real possibility of losing our son…not ready for him to leave the safety of my belly where I can talk to him and sing to him every day, where I can feel him and hold him close every second of every day. Monitoring the baby will be done on a weekly basis now as our doctor’s main goal is to make sure we are able to spend time with our lil baby. If at any point he feels like there are any issues arising, he will go ahead and induce me. As the end appears to be closer than we were anticipating the reality, fear and sadness is starting to set in even more. Our doctor is still convinced that we will just keep our little guy comfortable for the short amount of time he is with us, however we still hold on to every bit of hope and pray for the best possible outcome, as well as the strength to carry on whatever the outcome may be. 
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This weekend I spent some time reaching out to some different funeral homes in the area. We’ve known this is something that we’ve needed to do so we are prepared if and when the time comes. As hard as it was to bring myself to sit down and write emails explaining our situation and asking for burial/cremation information for our unborn son, it was nothing in comparison to receiving emails back with the information in black and white. Regardless of how much hope and faith we have, we will have to plan for our son’s death incase that is the path we will have to follow. Looking online at baby urns and caskets instead of car seats and cute lil baby clothes is something I would never wish on anyone. We continue to hold on to every bit of hope and to each other during these last few months. We appreciate your continued prayers and love that you send more than I can express. Some days it truly is you guys that help get me through the day and I could never thank you enough for that!

Today was another doctors appointment. 26 weeks….his little heart beat is strong, everything good…except the fact that the fatal diagnosis still stands. At times I am finding it very tough to find the perfect balance of holding on to hope, yet remaining realistic so that my world doesn’t come crashing down on top of me unexpectedly. Last Tuesday evening two very amazing women from a group called Angel Watch, a perinatal hospice, came to our home and met with Jon and I. I was so very hesitant when they first contacted us…I felt like meeting with them was yet another confirmation that our baby is going to die. I felt a sense of guilt…as though meeting with them was a sign that I was giving up hope. Several times I considered canceling, but am so thankful that I didn’t. Another blessing brought into our lives during this time to listen to us, give us guidance and support us through the tough road that lies ahead. I no longer doubt if we made the right choice to continue on. I can’t wait for the day we get to hold our baby boy and let him how much we love him, regardless of how short that time might be, but until then I am so thankful for every second of every day that I get to carry our son inside me.

This past Monday we reached 24 weeks. In the state of Utah, that was our deadline for “terminating our pregnancy”. Jon and I were never really able to talk about that as being a realistic option for us. We have felt all along that wasn’t our choice to make….we couldn’t bring ourselves to be the ones to choose our son’s death date. I have always loved being pregnant, this time is no different, although before the closer I got to my due date the more anxious and excited I would get to meet and hold my lil babes….this time the closer it gets the more I start to dread it because I want to keep this lil guy with me as long as I possibly can. Uncertainty is scary, knowing we will lose our son is scary…but we know in our hearts that we have made the right choice. I know that with each other, and the love, support and prayers we get on a daily basis from you guys, our friends and family, not to mention total strangers, we will make it through this. 

Sometimes the fight to keep your head in a positive spot is a hard one….sometimes when you think you have a small part of the puzzle figured out, life is right there to remind you that you really don’t. This weekend we received some news that knocked me back a few steps…newborn transplants are currently not being done. Shattered. Our hopes of our lil baby being able to help save another little baby was short lived. I finally had felt like I was at peace the best I could be with the situation, and now I found myself back at the beginning. I haven’t given up hope for a miracle, but I am also learning that some times you just have to accept things as they are. Live life one day at a time and not set yourself up for disappointment.💙💙💙

On Jan 3rd we had a routine doctors appointment. We knew we would be having an ultrasound and couldn’t wait to see our baby again!! We were excited when we found out it was another boy, but we also found out that they had some concerns. My babies have always had a history of not cooperating during ultrasounds, so the fact that he was squished up against my cervix and not giving us a good view didn’t come as a surprise. The technician wasn’t able to tell if there might be something wrong with his legs or if it was just the positioning and angle. It was decided it would be best to set up an appointment with maternal fetal medicine to have a more in-depth ultrasound done. Of course we were hoping they could get us in that very day or the next day at the latest…no such luck. We were scheduled 2 weeks out. 
We went into this appointment expecting to hear there might be some issues with our sweet baby, what we didn’t expect to hear was the word “lethal”. We were told that our little guy has a form of lethal skeletal dysplasia, called osteogenesis imperfecta. There are 5 different types, 1-5. Unfortunately the type our lil guy has is type two which is the most severe. The doctor told us that he will have less than a 1% chance survival rate at birth. Almost all infants die at birth or shortly after due to respiratory problems, if not prior to birth. Clearly we hadn’t heard what she said correctly. There was no way we were being told that our baby isn’t going to live. She went on to explain that unfortunately there is nothing that can be done to fix it. 
We have been given two choices…the first choice being to deliver him now, the second is to carry him full term. Neither one is an easy choice, and sadly neither one has a good outcome. We feel strongly about going full term, but struggle with knowing if this is the right thing to do. We most definitely want the least amount of suffering for our baby, but we also want to hold on to any bit of hope and possibility of a positive outcome. Obviously our decisions will be based on how things go week to week and month to month. We have also been told that it is very possible for our baby’s heartbeat to stop beating in utero. We are doing our best to stay strong and remain hopeful. If you could find a spot in your prayers for our family and baby at this time, words could not express how thankful we would be. ❤️❤️❤️