A Challenging Week

Sometimes, this journey that Sam and I are walking through is just so hard. Other times, we are able to laugh and smile our way through the days. I don't really understand what makes the difference. Sometimes it's as stupid as a commercial, other times a conversation comes up with friends about their precious ones growing up. This week...has just been very hard. A few times this week, Mary's heartbeat has been a little whacky. It's always scary to hear that, but ultimately we know that there isn't anything we can do. Thank the Lord, each time her heartbeat and leveled back out. The doctor assured us that as long as it returns to "normal" within a day or so, we are good. We met with yet another new doctor on Thursday. We are seeing a new one every week because they want everyone to be comfortable with us as there is no guarantee who will deliver us. This week's doctor was fabulous. She came in and said the the main doctor had briefed the whole office on our situation and she was excited to meet us and walk this journey with us. I was blown away. I can't imagine it's easy having patients like us. It really warmed by heart. She answered a lot of questions we had. She talked about my blood pressure, which was good this week. We talked about all the warning signs to look for. It was a pretty typical appointment. The difference was, I didn't feel like we were an unfortunate burden for her. I honestly felt like she cared. It was awesome.

Right after our appointment, we headed to Ryan House. Now that we are at 25 weeks, it's time to start solidifying our birth and potentially death plans. I had so much anxiety over this appointment it was crazy. We got to Ryan House early so we had to wait. The house is such an amazing place. Yet, it is such an incredibly sad place as well. One of the nurses greeted us. She was so kind even though she was in the process of helping another family. As parents, Sam and I fit right in with all the families there. That reality sucks. I am so thankful for a place though that loves all kids with life-limiting conditions from conception, through their life on earth, and then through death. Someday, when Sam and I are millionaires, I can't wait to be a financial supporter of this organization. In time, I will also volunteer there as a way to honor our precious Mary. 

It was finally our turn to meet with the wonderful lady who continues to walk with us through our journey. We were taken into a quiet room that overlooks the memory garden. She touched base with us on how we are doing and all that typical stuff. I instantly started getting really hot and sweating. Sam wasn't hot at all, so I knew it was my emotions. We talked about how it's time to make plans. She explained that when I go into labor, or when I'm induced depending on the situation, to make sure we call her. She will be there to support us through the journey. She will make sure that the right tests are ordered after birth, she will make sure Mary is comfortable. Ugh. I started feeling sick as we talked about this. She explained what she will do for the big part of Mary's spine that outside (the spina bifida). She will cover it and make it the most comfortable. I wouldn't have even thought of things like that. We talked about how we will make sure Mary is comfortable for as long as she's with us. They will most likely give her some pain medicine. We can also provide oxygen for her, but she explained to us that oxygen won't do much because her brain controls the breathing and thats where she has the abnormality. We will probably do it anyways, it will make me feel better. The conversation then turned to how it's time to write all of this out. Ryan House will provide us a workbook of sorts where we will fill out every detail to make sure everything happens the way we want it. We have to make decisions like what kind of pain control will I use, will we want Mary monitored throughout the birth (if she's alive), who do we want in the room, who will baptize her, who will be doing pictures, which funeral home will be on standby. Such hard conversations. I couldn't take it anymore. I tried everything in my power to wrap up the conversation so we could leave. Ryan House will send us this "workbook" of sorts this weekend. When it's all done, Ryan House will send it to the hospital we chose and make sure the charge nurse is aware. It really is a beautiful system they have set up. I am so thankful for it. But it still....SUCKS. 

Once we were out and in the car, I just knew I was going to throw up. Sam and I were supposed to go to dinner afterwards, but I just wanted to be home. Sam was such a big support again and was totally fine taking me home. As we started driving, he looked over at me and said so lovingly, "It's okay to cry." Well then I lost it. I don't know where all these tears come from. God seems to be giving me an unlimited supply. Once we talked it through, and I cried it out, I felt much better. 

Yesterday we got a letter from my insurance company stating they are denying paying for some major tests because they are "not medically necessary" due to the fact that Mary still doesn't have a diagnosis. This really upset me. I cried so much again (see the tears just keep coming)! I called insurance and they were so rude. I cried as I explained that even though I am so young, I am most probably carrying a baby with Trisomy 13. I could have killed the woman, she had no compassion. I then called the doctor who was wonderful. They are going to help us fight it. It is such a small thing, but the medical bills are already piling up.... and it's tough because of course we are doing everything we can for Mary, but at the end of it, we won't have a precious bundle of joy to watch grow up. 

Today, Sam and I put together Mary's crib. Even though she probably won't get to use it, it was important to Sam that we have one. He stands by me and honors all kinds of things that are important to me, so I loved doing something for him. There are no words to describe accurately how I felt as I sat in the rocking chair, rocking Mary, as daddy put together her crib. Surprisingly I didn't cry. I was so proud of the man I call my husband. He rocked it like a champ. After it was done, we put all the special gifts we've been given for her in there. It now looks more like a nursery, but is something I'm going to have to get used to. This journey is so hard, but yet I will praise the One who has chosen me to carry Mary through it all. 

Sam, being the strongest daddy in the world. I love this man so much.

Her crib and rocking chair. The saddest nursery I've ever seen.