30 Weeks and Counting..

I just wanted to thank all of you that are reading this and praying for our family. Without your prayers I do not think that I would be sitting here enjoying little Addy's kicks and punches while I am writing this. As of today, I am 30 weeks and 4 days.. and for us, I feel that calls for a celebration! In these past several weeks, we have learned two things: that our little angel is a fighter and she got her mom's feisty genes. Anyone who has read about Trisomy 13 or that is familiar with this syndrome may know that most T-13 babies do not carry to term, if they do not miscarry in the first place. Well, here I am at 30 weeks, and all I can say is that Addy is a fighter! 

Last Wednesday we had another ultrasound, and Mark's parents were able to be there in person to see their granddaughter. They were so thankful to be there and I know how much it meant for them to see her in person. They also got to see how feisty she has become! Every time the ultrasound nurse pushed on my belly with the wand, she would kick out at it to push it away. She certainly gave everyone some laughs! Another night Mark decided to "play" with her and pushed on my belly a little with his hands. She got so mad that she shoved his hand all the way out, leaving Mark completely shocked! All of these little things remind me of the reason that we chose the hard route.. the reason we chose to carry our precious little girl. Not one day goes by that I regret our decision to not terminate the pregnancy. Every night as Mark lays there talking to her and enjoying her "soccer games" I thank God for the little blessing that is inside me. As much as we pray for a miracle to happen and for her to come home, we are so very thankful for the time we have already been given with Addy. For anyone out there that is in a similar situation or will be in a similar situation in the future, I will say this: even though it is the harder path to take, you will never regret choosing to carry your little one to term. The doctors and other outsiders may tell you otherwise, that your child is "incompatible" with life, but I believe it is the opposite. That child will change your life and everyone's around it for the better. 

Updates on Adalyn
The ultrasound last Wednesday did not show a lot of changes. They still saw the "asymmetry" with her heart indicating the hypoplastic left heart syndrome, along with enlarged kidneys. One positive thing they saw was that it does not look like she has a cleft lip or palate, which took some worries off because if she does survive it will not be as hard for her to eat. She is also measuring in the 2%, which means that she is pretty small (typical of T-13 babies). 
Prayer Request: Even though Addy has managed to fight for this long, we do not know how much longer it will be before I go into labor. We are asking everyone to please pray for her to be able to fight for at least another 8 weeks or so. Thank you!

Last week we got to spend five days with Mark's parents and brother in Boston, and two days out on Cape Cod to finish the week. It was so nice to be able to spend time as a family and to explore the sites around Boston and the Cape. We saw some historic sites and also relaxed on the beach for a few days. Again, Addy got to see and do some new things, which we are very thankful for. 

Psalm 13.. How Long Lord?

These past few weeks at church we have started a new series called "Psalms: A Soundtrack For Our Lives." Our church has several pastors, and each of them has given a sermon about a specific Psalm, and has related a song to their story. You would think that since last week was about enjoying the periods of great happiness and blessing that I would have seen this week's sermon coming, but I did not. Pastor Jeanette spoke today on Psalm 13. Her message was titled "How Long, Lord?" The Psalm is from David, and in the beginning he starts out basically yelling at God and sounding so angry. He is crying out about his struggles and feels forgotten because of his situation. In the end, his tone does a complete 180 degree turn and he praises the Lord because He is good to him. 

During the entire sermon, Mark and I sat there hand in hand and had to give each other a few squeezes here and there. It really hit home for us. Ten weeks ago we began this journey with feelings of complete anger and abandonment when we found out our sweet Addy's diagnosis. My prayers for the first little bit consisted of questions like "How could you do this to us Lord?" and "Why us?!" Then, after speaking to certain people and hours upon hours of talking and crying, Mark and I realized that Adalyn was given to us for a specific purpose. He trusted us with her and knew that we would choose to carry this sweet angel, and somehow He knew that we would do whatever we could in our power to make sure Adalyn affects at least one person's life. Now, my prayers and questions consist of asking Him how we can help others using our situation. Our little girl has already changed our lives and strengthened our faith in so many ways, and if we can just bring one person to know what it means to love God then that is one more person that will get to enjoy the blessings of heaven. 

The last verse in Psalm 13 states: I will sing to the Lord because He is good to me. Because of all the blessings that God has placed in our lives over the past few months, we have realized that we are not alone and that God really is good to us. The phone calls, emails, cards, and edible arrangements that we have received were all sent from Him. There have been times when I wonder how we are going to get through this, and then I will get a message or an email saying that we are in someone's thoughts and prayers and my strength is renewed. My mother-in-law spent last week at a camp called Solid Rock, where they get children from all over Ohio who come to spend a week of worship. She told me that all of them are praying for our family and that they even prayed over a blanket that she is making for Adalyn. To know that we have people from not just all over the country, but from all ages praying for us is what gives Mark and I strength to keep walking this path on our journey.

What I want others to get from this is that no matter what season you are in, God is there every step of the way. Even in the darkest of moments, He is there to help guide you out. You are never alone in your struggles, even if you may feel it at times, because He is there waiting to give you the strength to "overcome the grease on the sides of the tunnel, so that you can get to the light" as Pastor Jeanette says. Whether you have lost a loved one, moved away from family, lost a job, or whatever other struggles you may go through, it is good to know that God is always there. 

I volunteer with our junior high ministry, called Fusion, and today we talked about Matthew 5:3. It is a verse out of the Sermon on the Mount, and it goes "Blessed are those who mourn, for they will be comforted." Jesus is stating that if you are grieving, He will bring you comfort in the end. I know that over the next few months we may be going through this period, but in the end, we will find comfort and good things will come from it. This is true for anyone: whatever season you are in right now, whether it be great joy or a period of mourning, God is there every step of the way to bring you comfort and happiness in the end. Jocelyn, one of Fusion's leaders, told us an Arab proverb that goes "All sunshine makes a dessert." Everyone will go through a period of "rain" in their lives, because in the end, it will bring us closer to God.

Here is all of Psalm 13:

¹ How long, Lord? Will you forget me forever?
    How long will you hide your face from me?
² How long must I wrestle with my thoughts
    and day after day have sorrow in my heart?
    How long will my enemy triumph over me?

³ Look on me and answer, Lord my God.
    Give light to my eyes, or I will sleep in death,
⁴ and my enemy will say, “I have overcome him, ”
    and my foes will rejoice when I fall.

⁵ But I trust in your unfailing love;
    my heart rejoices in your salvation.
⁶ I will sing the Lord’s praise,
    for he has been good to me.

Prayer request: Last week I reached out to another family who has been affected by a trisomy diagnosis. They are the Mummerts and they currently live in Virginia. My friend Claire is the one who directed me to their blog, which is about Harrison, who was diagnosed with Trisomy 18, which is similar to Trisomy 13. Ever since I introduced myself to James, he has been extremely kind and has shared Addy's story with everyone he knows. We now have more people who know Addy and who are praying for us, which means the world. The Mummerts have been another blessing from God, and I just want everyone to say a prayer for them, because they have gone through a great period of sadness over the past couple months. Thank you! Here is their blog: http://harrisonjamesmummert.com/

 

 Mark and I went to Hampton Beach yesterday and took a picture to add to our collection. It was nice to get to spend a relaxing day as a family! Plus, I found my favorite store ever: Sweet Hannah's. I got to stuff an entire box full of salt water taffy for $9. They had flavors like PB&J, cotton candy, creamsicle, and watermelon! Yum!

Almost to the 3rd Trimester!

As I was sitting on our couch watching Formula One with Mark (we only have one TV) I got to thinking... I will be 28 weeks this Thursday! Obviously I have been very involved in this race.. sorry Mark. So, I decided that I needed to share this news! In a normal pregnancy, it would not be such a huge milestone, but in our case, the fact that our little fighter has made it this long is a miracle. Of course it is hard to get accurate statistics on these types of pregnancies, but from what I have researched and talking to others in our situation, it is very rare to carry a full trisomy 13 baby this long. Most of these babies will have miscarried already.. but not our sweet Addy! In fact, her kicks have gotten so strong that sometimes I watch my whole belly shift! Today as we were sitting in church, she decided that she was very interested in the pastor's sermon on enjoying the seasons of blessing in our life. Mark saw me looking down and as he did so, he got to see a little punch-kick combination. He just stared and smiled. 

Speaking of church today, this specific sermon really got me thinking. Our pastor kept talking about how we are in a season of great joy and that things are going well, especially with our church expanding. He talked about his family and their adoption of twins, and also about other happy moments. The message was that we should be strengthening our faith in times of great joy, and not just in periods of struggle and sadness. He said to enjoy the "autumn before the winter". I kept telling myself that this message was not meant for me, because I am not in a period of great joy and blessing. But then, as I got to thinking about it, we ARE in a period of joy and blessing. Our precious Adalyn is a joy to us and such a blessing. As angry as Mark and I get at times that our child has to go through this, we have managed to bask in God's glory and love because He has blessed us in so many ways. Although I may never know exactly why He did this to us, I do know that there is a reason she was given to us and that something amazing will come from this. 

On another note, it has been a week since I have been back in Boston. Mark and I got to fly home for our friends' wedding, and I got to spend a full nine days back in Dayton. It was so wonderful driving on "normal" roads with friendly drivers and not getting caught up in the hustle and bustle of living around Boston. It was very relaxing and I enjoyed every moment I got to spend with family and friends. I got to go out to breakfast with my parents, go shopping with my mother and grandmother, go out with friends, and have a picnic with our whole family. We have not been home since we found out we were pregnant, so it was so nice to see everyone and I embraced every hug and warm smile I received. It was very hard to say goodbye, but we are looking forward to the next time we get to go home. 

Lastly, we are asking for even more prayers than ever. Even though Addy has managed to make it this long, every day I wake up fearing that today might be the day that I go into labor and may lose our precious angel. It is so hard waking up like this, and I continue to pray to God that He gives us longer with her. We are also going to meet with a funeral home this week, to make arrangements just in case she does not make it out of the hospital. It is going to be so hard walking into a place like this, because nobody should have to plan their child's funeral. It is supposed to be the opposite and our children should be the ones burying us. But, we have been put in this situation for a reason, and we are continuing to ask for strength and courage to get through these obstacles. We continue to thank everyone for all of the amazing support and prayers that are given to us, and we know that we would not be able to get through this without these things and our faith. To all of you reading this who have supported us and prayed for us: Thank you.

This is the necklace my Aunt Kathy had made for me. It has Adalyn's name on it along with both of our birthstones. I absolutely love it and will wear it every day. Thanks Aunt Kathy :-)

Here is just some evidence at how much support we have gotten. Between the cards, edible arrangement, and the phone calls, words can not express how thankful we are. Again.. thank you everyone!

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.

Post Doctor Visit

It has been three days since our doctor visit on Thursday, and I feel that we have taken a few steps backwards. After spending two hours in the ultrasound room and having the doctor come back twice to get a better look at things, I have lost a little bit of hope. The ultrasound doctor gave us a copy of the problems they found on the ultrasound to give to the palliative care team when we meet. Mark and I have obviously prepared for the worst, but hearing the words come from our doctor were very hard to take in. My heart sank when we heard some of the problems described. Of course, we are still praying for a miracle that we can somehow bring little Adalyn home, but now I am not so sure that is what God has in mind for our baby girl.

One of the findings on the list was that she has a hypoplastic left heart, meaning that her left side is smaller than the rest. When Dr. Goldman explained to us that the left side is the most important and that it pumps blood to the rest of the body, we knew it meant that it was bad. They also found some things that suggested dandy walker malformation, which means that parts of the brain are not formed correctly, and Dr. Goldman said he thinks that the connection will not be there because of it. They also said there were abnormal findings with the face and head, but we are not sure what all the big words mean. Hopefully when we go see the palliative care team they will be able to explain them better. To sum everything up, some of our worst fears came true on Thursday. 


Again, I feel so angry and I have been asking over and over, why us? I have been wanting to be a mother for as long as I can remember, and the past seven years of my work career and life have revolved around children. The Lord knows how much I love children, and to think that He would do something like this to me just seems so cruel. But again, Mark and I have been reminding each other that there IS a reason for this, and He gave us this precious child for a reason. Adalyn is already such a blessing to us and we are enjoying each and every moment with her for as long as we have her with us. Each and every kick or movement I feel I treasure because it reminds me that she is still alive and kicking, just like the soccer player we had predicted her to be.


My mother-in-law is up visiting us right now, and she has told us the positive impact that Adalyn has already made on lots of people. She said that friends of friends are praying for us and that a friend from church is using our story in her high school classroom to help teach a lesson on the real value of life. This has helped us to restore some hope, knowing that our precious angel has already made some type of impact on others. Maybe someday it will save another child's life, if another mom reads this who is in our situation and decides not to terminate her pregnancy. Or maybe it will help people to see how valuable life is, and to enjoy each and every moment you have with the loved ones around you. I know that Mark and I will be forever changed by this, and that one day when we have healthy children we will appreciate every second we get with them. We will also tell them the story of their sister who they will someday meet, if she does not get to meet them on earth. We will all be stronger from this, and will do our best to use this for good the rest of our lives. I hope that if you are reading this, it helps you see life a little differently and to appreciate the loved ones who you are blessed with and to enjoy every second you get with them. I know that we will.