Positive news.. finally!

Over the past 8 weeks we have been feeling as if everything is going against us. From getting the life altering news about Addy's diagnosis, to the ultrasounds. Fortunately, on Tuesday, we got some good news! Certain friends and family may be familiar with my situation of the past year and a half, and the disorder I have been diagnosed with. About 18 months ago I noticed that I had lots of bruises all over my body, and they kept coming. After listening to Mark tell me that I needed to see a doctor for almost a month, I gave in. Long story short, I got a phone call that night telling me my platelets were only at 19,000 and that I had to start taking prednisone (a steroid) immediately. 

After seeing a hematologist the next day (I did not know what a hematologist was prior to this) he told me that I had a blood disorder called ITP, or Idiopathic thrombocytopenic purpura. Basically, my body was destroying my platelets, causing me to potentially bleed internally. Over the next few months I had take prednisone to get my platelets back to a "normal" level of 150-400,000. I will not list all the side effects of taking this medicine, but let's just say they were not fun. Two ER trips and 12 lbs later, I was able to stop taking medicine. They were three rough months.


When we moved to Boston and I started seeing a hematologist, she had told me that when I got pregnant, my ITP could make my platelets drop again. She said I would have to start getting treatment if that happened, which was the last thing I wanted to do. I had gotten my blood tested several weeks ago and they had dropped, but not drastically. So, when I made an appointment to see a new hematologist with BWH, I was very nervous. Lots of people were praying, including us, that they had gone back up on their own. Two days ago I got the phone call with the results, and they were almost normal. To put it in my mother's words "hallelujah!" Our prayers were finally answered, and for the first time in a while, we got good news. 


Of course, we are going to continue to monitor my ITP over the rest of my pregnancy, and we feel confident that if something does happen, we are in good hands. My new doctor seems wonderful and we are in the best place we can be right now, with some of the most qualified doctors and research. Sometimes I feel that God brought us to Boston as part of His plan for us, and we are thankful for that. We are still enjoying every single kick that Adalyn gives us (especially her soccer games) and continue to pray every day that God will give us some kind of miracle. We deeply appreciate all the prayers and support, and could not feel more blessed to be cared about like we are. Adalyn has a wonderful group of people that love and pray for her, and we thank God every day for it. 


On another note, tomorrow we are flying back home to Dayton! We have not been home since Christmas, and are looking forward to seeing familiar faces. It will be the first time Addy gets to visit our hometown, and we will treasure every moment. So, for all of our Dayton friends and family, we will see you soon!

Cherishing The Small Things

Cherishing Each and Every Moment

My mom sent me a beautiful pregnancy journal to keep track of these 9 months of joy. Unfortunately I have not touched it since the day we found out about Addy. I finally picked it up to add some more entries a couple days ago because I thought it may be good to right a few things down, but when I opened the cover, it said “For the happiest 9 months of your life”. Pregnancy IS supposed to be some of the happiest moments of a woman’s life… right? After staring at the journal for several moments, I finally broke down in tears and put the book in storage. I could not do it. For me, I can not say the same. 

Add to that the fact that Mark and I had to complete one of the hardest tasks we have come across in our lives the other day: developing a care plan for the hospital. Writing down on paper words like “no ventilators” and “funeral home” were the hardest things we have done. Despite this, we want to have a written plan on the things we do want and do not want for Adalyn and the care we receive. Of course, we are praying for a miracle that Addy will make it through birth and that we will get a few precious moments with her, but we want to have a plan for every scenario possible. 

Therefore, we have come to the conclusion that these months are definitely the saddest moments of our lives, but why can’t they also be the happiest? Mark and I have made a pact that we are going to enjoy every single moment that we are given with Adalyn. Even if that is just for another few months, every second counts. He has started a ritual every night of feeling her movements. We have both concluded that if she did not have this diagnosis that she would be a star soccer player. She kicks and moves so often that sometimes it startles me! One day Mark had his hand on my belly when he suddenly jumped, because Adalyn kicked him so hard that it moved his hand. From then on he has decided that these moments at night are what he looks forward to every day. I myself have enjoyed each and every kick, because it reminds me that I have a precious angel inside my belly and that each moment with her I am going to enjoy. So, we pray every night thanking God for the little miracle that He has blessed us with, and ask Him to let us enjoy many more of these precious moments. We are so thankful for all the prayers and support we have received, and continue to ask for one thing: prayers. Prayers to give Mark and I continued strength and prayers that we may be able to meet our daughter at least for a brief time, until we have to wait until we get to heaven to see her again. 

Meeting the Palliative Care Team

Trying to Prepare Ourselves

Since anything can happen at any time of this pregnancy, Mark and I decided that we are going to try to be prepared as possible. Of course, we will never be able to fully prepare for what is to come over the next several months, but we are going to do our best. So, yesterday we met with a couple people from the Palliative Care Team at BWH. It consisted of Dr. Manning, who is a neonatal doctor, and a social worker with the NICU. I would say the meeting went pretty well considering the circumstances that it was under. Dr. Manning was wonderful and seemed very genuine, which made us feel much more comfortable. He had a notepad out that he had already taken some notes down about us, and asked us several questions about our general background to start everything off. He asked us what we both do for jobs, where we live, and about our family. He also wrote down Adalyn's name and double underlined it, which meant a lot to us that he wanted to remember her name.


Over the next hour Dr. Manning educated us on what his team does and what they can do for us when it comes time. He told us that we have the option of delivering Adalyn in the NICU or on the regular care floor, and that it was wherever we feel the most comfortable. That was their main concern: making sure we are as comfortable as possible. Dr. Manning told us some things to expect when it comes time to delivery, such as the fact that Adalyn may not make it through the delivery process, and that infants with T-13 typically live 3-14 days after birth. When we showed him the ultrasound notes, he did say that if she really does have the hypoplastic left heart, that once she has to start pumping blood on her own it does not look good. He said that heart problems are typical in T-13, but the hypoplastic left heart is not typical. The thing that was the hardest thing to hear is that there really is not anything to do to "fix" the problems that come with this abnormality, and that their goal is to make sure that there is no suffering. Mark and I have already decided that we do not want to prolong any suffering, and that our main wish is to get to spend even just a couple hours with our sweet angel. Dr. Manning said that he will make sure that the nurses in our room are aware of this, and they will make sure that we get as much quality time with her as possible, which really means a lot to us. 


It was extremely hard having a meeting like this, discussing what is to come in the next few months, and even talking about funeral arrangements. This topic has come up a few times with the two of us, and we are still not sure exactly what we want to do, but as Pastor Cynthia told us, we will know when the time comes. My heart hurts at the thought that we are already "preparing" funeral arrangements for our baby girl, but it is what we have been dealt with, and we are going to stay positive and strong through this. We both know that our time here on earth will not be very long, and that we will be reunited with our little angel one day. Hopefully she will have brothers and sisters to meet her too, and we will all be reunited. She will have lots of people to take care of her while she is waiting, such as "Mamaw" and her Great Grandpa Bill. She will be in good hands.. and that is what keeps us going. Our hope is that we can use this as a witness to others, and that people will know that they should cherish life. Maybe Adalyn's story will bring others to know the Lord, and that at least one person may be saved because of our sweet angel.