Happy Holidays!

It has been a few weeks since I last posted on here and even though Adalyn is no longer with us on earth, I thought I would continue to update our blog so that her story can continue to touch others' lives. I have been having a lot of thoughts flooding my mind lately so here goes nothing....

Well, the holidays are officially here! For those of you who know me personally, I do not have to remind you what this means to me... but for those of you reading this who I have not had the privilege of meeting, I will sum it up in one sentence: I LOVE CHRISTMAS! Of course the pretty decorations, gorgeous light displays, delicious food, and wonderful music are all really nice... but that is not my favorite thing about this season. It is the Christmas spirit that rapidly spreads through so many people that I enjoy. Everyone seems to be a little bit happier and nicer during these times. People are in a more giving spirit and want to help others more around Christmas! This is where the Advent Conspiracy comes into play. What is the Advent Conspiracy you may ask? Here is the link: Advent Conspiracy. Okay okay I know it sounds like a promotional ad, but this is something that means a lot to me. If everyone were to buy a little less and give a little more, the world would be a much better place!

To change the subject, I do want to spend a little time talking about our family. A lot of people have been telling us that they are still praying for us, which means the world. It has been almost 10 weeks since our precious angel's birthday. We still miss her every second of every day, and will never stop missing her. It has been a journey of ups and downs, and I know that we will continue to face obstacles in the times to come. We still pray for Him to give us strength all the time, because we are human and will hurt some days worse than others. We continue to grieve in our own ways, and will always grieve for our little girl. 

Even though I am so excited that it is the Christmas season, it just is not the same this year as it has been in the past. This holiday season is probably going to be the hardest. It definitely has already started to get hard. It started with Halloween... when we realized that we were not going to be able to dress our little girl in the lady bug costume that we had in mind for her. When we first found out she was due before Halloween, we were so excited that we were going to be able to dress her up in an itty bitty costume. Baby lady bugs are just so cute! 

Thanksgiving.... it was definitely a little hard, because we both knew that someone was missing. It was a mixture of emotions that day as we sat around with all of our friends and enjoyed each others' company. We have so many things to be thankful for, and we will always praise Him for all of the things that he has blessed us with. We have an amazing group of people in our lives who I thank God for every day. Our friends and family have been our rock this last year, and we do not know where we would be without them. We also live in an awesome city and have gotten an experience that we will cherish forever. I could go on about all of the things we are thankful for.. but the main thing is Adalyn May. We are so thankful for the time that we had with her and to know that we will one day be reunited with her. We can not wait to get to hold her and hug her again! So even though I have been angry several times this past year, it is safe to say that we are so blessed. I pray that you will also look back and see all of the things that God has blessed you with in your life. Even the small things.... be sure to thank Him for being so merciful and loving!

 Today it really hit me hard when we were out buying our Christmas tree and started setting it up. I realized that we will never get to take Addy to help pick out a Christmas tree. She will never get to help hang ornaments while listening to Christmas music and drinking eggnog (family tradition). We will never be able to take her to get her picture with Santa, or dress her in a beautiful Christmas dress. We will also never get to see her face on Christmas morning as she opens up her gifts from Santa. For the longest time I had been looking forward to starting a family and creating our own traditions every year. I would constantly bug Mark about all of the things I could not wait to do with our children every holiday season. One day we may have other children that we get to do these things with, but we will never get to do them with our little Adalyn. I know that over the years things will get easier, but in my heart I will always think this. 

For now, we just have to remind ourselves that our sweet angel is looking down on us and would want us to be happy and to enjoy this season. Again, it is so bittersweet... knowing that we have been blessed with our little girl, but not getting to do these little things with her as she grows up. There are probably so many people out there who have lost a child like we have, and our also hurting right now. I ask all of you to say a special prayer for these families during this time. 

On a happier note, we would like to welcome Adalyn's new cousin, Gabriel Michael, into our family! Baby Gabe was born last Wednesday at a healthy 8 lbs 6 oz! We are so excited to meet our new nephew this Christmas! I know that Adalyn is looking down and loving her new cousin... she can already start her guardian angel duties! 

Mark and I got to go home for his best friend Jeremy's wedding last month. He was a handsome groomsman!

Mark surprised me last night by taking me downtown to get sushi and to see the Grinch musical! The Grinch is my favorite movie ever... so it was a wonderful surprise!

Pregnancy and Infant Loss Awareness Month

I have learned a lot of things during this journey, one of them being that we are only one of countless families that have lost a child. Before our lives changed with the devastating diagnosis, we were so oblivious to what was going on around us. I have heard from so many women who have told me about their miscarriages and what they have gone through. They tell me that it is not quite the same as what we have gone through, but it does not matter if it is the same because one way or the other, it is devastating. 

I also hear about friends of friends who have had babies with some kind of illness or trisomy. They have lost their children at some point, and have gone through what Mark and I are going through. I had no idea how many there were until now, and it makes me wonder why God lets these things happen. I know that He probably has a plan in mind for each of these families, but it is hard to think that so many babies have passed away. 

I am writing this post in honor of all of these people who have lost a child or children. No matter what the circumstance, it affects us for the rest of our lives. We will always grieve and remember our children. Even if and when we go on to have other children, we will always think about the ones we have lost, and how they should be growing up right alongside their siblings. Life is not fair, but it is how we handle it and what we make of what is thrown at us that makes us who we are. We have been forever changed, and have become stronger and better people.

As Mark and I still grieve, there have been talks about trying again for another baby. We feel that in some way, it will help our grieving process. To think that one day we will be able to have a healthy baby gives us hope during these times. One thing that crosses our thoughts is what people will think of us if we get pregnant again. Will they think that we are trying to "replace" our little girl? I would hope not... we know that we have so many people who love and will always support us. I recently read a quote that says "I could go on to have 1,000 more children.... but there will always be 1 missing." This is so true... Adalyn will forever be in our hearts and minds, and we will never be trying to "replace" her. We always say that one day Addy will have brothers and sisters, and will be their guardian angel. Grandma Scholz reminded us that she will have her hands full if our children are anything like we were. Get ready Addy!!

"Although we know that after such a loss, the acute stage of mourning will subside, we also know that we shall remain inconsolable and will never find a substitute.  No matter what may fill the gap, even if it be filled completely, it nevertheless remains something else. And actually, this is how it should be. It is the only way of perpetuating that love which we do not want to relinquish". -Sigmund Frued

Update..

First off, I want to thank everyone who read my last post and prayed for these two families. I know they appreciated the prayers, and will appreciate even more prayers as they continue to go through their journeys. 

I will start off with an update on the Romito family. Little Robbie had his open heart surgery last Thursday to fix his precious little heart. The surgery was a success and he is recovering wonderfully! Every day he gets stronger and they get closer to bringing him home. God is so good!! I am sure they will appreciate more prayers that he continues to get better everyday :-)

The other family I asked for prayers is the Davis family. Little Kinsley was born last Wednesday around 4:00 p.m. and survived 39 minutes. They had 39 precious minutes with their beautiful girl before she went to go see Jesus. Please pray for comfort, peace, and strength for Katie and Josh as they continue on this journey until the day they are reunited with their little girl. It has been a bittersweet journey that both of our families have been on, as we have been blessed with beautiful little angels, yet we only had a short time with them. I know that Adalyn was there to greet little Kinsley, along with their friend Harrison Mummert. These three precious angels will probably be best friends and will be there waiting for us when we finally get to be reunited.

Thank you everyone for your prayers and support. These two families, along with Mark and I, are forever grateful for people like you who have been there for us. 

Update on our family: 

Mark and I spent two wonderful weeks back in Dayton with friends and family. We were surrounded by love and support the entire time. Thank you everyone for blessing us with lots of love and comfort! We are now home, and we brought someone back with us. Little miss Roxy made the 14 hour trip back to Boston! She is our 50 lb mutt who is full of energy. We will definitely keep busy with her!

We will continue to post updates on our family, as we have both heard our calling to use our precious Addy May to show God's love and grace. I am not sure exactly how he wants to continue to use us, but I pray that He will lead us on this journey. Thank you all again for helping us on it... we are so blessed!

Urgent Prayer Request

Prayer Request #1:

Over the last several months I have met new people who are on or who have been on the same type of journey that Mark and I are on. We are members of a community that is called Living With Trisomy 13, where we can meet people who have had or currently have children with trisomy 13. One relationship that we have developed is with a young couple from Arizona, who found out about four weeks after me and Mark that their little girl has full trisomy 13. Her name is Kinsley, and her parents are Katy and Josh. They are an awesome family and we have grown close over the last few months as we have gone through this journey together.

I got a text message around 1 a.m. last night that said her water broke and Kinsley is coming. She is currently only 35 weeks, but we are praying that their hopes and prayers get answered and they get to at least meet their little girl. I know how much it would mean for them to get to hold her while she has a heartbeat, but if it is not in God's plan then I ask for prayers for comfort and strength for them. 

Please pray for their family during this time that they receive comfort and great care, and pray for their little girl Kinsley.  

Prayer Request #2:

When I found out I was pregnant and decided to tell all my best friends back home about it at six weeks (we could not wait any longer), that SAME exact night my best friend Fiona also announced that she was PREGNANT. We were due less than a week apart... how crazy is that?! 

Her little boy Robert (Robbie) was born last Thursday. Everything was going great until about 30 seconds after he came out he stopped breathing. They originally thought it was just fluid that he could not get out, but when they did further tests they discovered he has a severe heart defect. His arteries were not hooked up to the correct part of his heart.

After transferring him to Cincinnati Children's Hospital, they have been waiting to find out when he is to get surgery. The surgery board met yesterday and decided that his surgery will be tomorrow. PLEASE pray for Robbie to get through his surgery, and for his parents to stay strong. Also pray for the Lord to guide the doctor's hands through this surgery.


Philippians 4:6-7 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 1:3

"I thank my God every time I remember you." ~ Philippians 1:3

It has been two weeks since the bittersweet day that we got to spend with our precious angel, Adalyn May. For all of you that have been following our story, I want you to know that we are still going strong. God has blessed us with the strength to continue on this journey and to spread the amazing story of our beautiful and wonderful little girl. 

A few days after her birth, we had a small memorial/celebration in honor of Addy. A friend of ours who is the young adult pastor at our church prepared a short but sweet service for us. Both sets of parents were there along with a couple friends we have grown close to this past year. The funeral home that we were working with picked her up from the hospital and got her cremated (at no cost). They bought a heart urn to put her ashes in and then we put that in a teddy bear. They told us they actually had to use two urns because she would not fit in one urn... Mark made the comment that she continues to be her stubborn self! We brought the bear to the service and placed her on the beautiful blankets that her grandmother's made for her. Everything was perfect and we are very thankful for everyone who aided in this process.

That Sunday we decided to make the trip home (Dayton, Ohio) to spend time with family and friends. Surrounding ourselves with people who love us and support us has helped to renew our strength. On Sunday, we got to go back to the church that we were members at before we moved. They invited our entire family up to the front during the service to receive prayer, and after service others from the church prayed for me and Mark. We definitely felt His presence during this time and we were also encouraged by what we heard from the members. 

Being told that we have inspired people and made an impact on others' lives gave us so much encouragement and inspiration to continue on this journey. So many people told us how much of an impact our precious Adalyn made on their life, and will continue to make. We also heard that we have helped to be a poster child for anti-abortion. To know that our story may save a child's life in the future reminds me of part of the reason our little girl was given to us. 

On Friday, I met up with friends for our old ritual of dinner at El Toro. It used to be a weekly routine to get together there once a week to catch up with friends. A few of them gave us some gifts in memory of Addy. One of the gifts was a beautiful photo album that had Adalyn's name engraved on it along with Philippians 1:3. This verse says "I thank my God every time I remember you." It was the perfect verse and could not have been said more perfectly. Every night since she was born, Mark and I spend some time talking to Adalyn before we go to bed. I make sure to tell her how proud I am to be her mommy and how thankful I am that she is mine. We also say a prayer thanking God for our perfect little girl.

Of course we are still grieving, and will continue to grieve for our precious angel for a long time, but we are still at peace and extremely thankful that she was put in our lives. I constantly tell Mark how much I miss her and wish that I could hold her in my arms. I will always wish that we could watch her grow up and see what kind of amazing woman she becomes. We will not get to see who was right in our argument about whether she becomes a goalie like her dad or a forward like her mom. Or whether she even plays soccer for that matter! I will never get to watch Mark walk her down the aisle for her wedding or dance with her for the father/daughter dance after. All of these things make me sad and angry at times, but I will never regret a single memory we have with her. I know that Adalyn was created for us and given to us for a reason, and we will always cherish that. We will forever be her parents and will forever love her. One day we will have brothers and sisters for her, and she will get to be their guardian angel. Grandma Scholz said that she will have her hands full with that, since their daddy was such a trouble maker from the start!

We cannot wait to be reunited with our Addy May and to get to do the things we would have done on this earth together. Until that day we are reunited with our little girl, we will continue to take every day one day at a time, and will always ask for prayers for strength. "I can do everything through Him who gives me strength" ~ Philippians 4:13. 

On another note, Mark came up with an idea to help keep Adalyn's memory alive. We designed some wrist bands to wear in memory of her. They have her name and birthday in pink writing (for our little princess). For those of you who I see or will see, if you would like one please feel free to let me know. They even glow in the dark (of course Addy wants to make a statement!)

September 18, 2012: Happy Birthday Adalyn May

Adalyn May: Our Precious Heavenly Angel

48 hours ago our precious and most perfect little girl came into this world. Although her heart was not beating and her spirit was not there, Mark and I were at peace and were so happy to be holding our Addy May. 

 Around four and a half months ago, Mark and I were so angry, heartbroken, and confused. We repeatedly thought, why us? How could something like this happen to such a young, happy couple? Last night as Mark and I were laying in bed talking about how beautiful and perfect our little girl was and is (I will get more into that later), almost everything came into place for me. This is exactly where Mark and I are supposed to be. Everything that has happened in the last several months has been for a specific reason and I have never heard God speak to me so clearly in my entire life. Adalyn May was perfectly designed and made for us. He had a very specific plan for our family and this calling has never been more clear to us.

Adalyn has already touched so many lives and will continue to touch many more. The 37 weeks that we were given with her were so amazing that I would NEVER regret a single decision that we made. We got to know her personality long before she was born... our little dancing soccer player who was stubborn and had attitude (sounds familiar). Every single kick, punch, and dance party that we got to feel and watch will be remembered for the rest of our lives. We are so happy to know that she is now in heaven and will be able to play soccer and have as many dance parties as she wants. Mark and I will have to practice our soccer skills so that we can give her at least some competition when we get to meet her!

If not for our faith Mark and I would not be in the position we are in today. To know that she has already gotten to be held by Jesus and that she is being spoiled by all of her grandparents and family that are up there is the most comforting thing for us. She will be waiting for us and Mark and I will be counting down the days until we get to meet her and hold her again. I also hope that this message will get to countless others so that you can see that with God, anything is possible. Yes, we are still heartbroken and miss our precious little girl dearly, but we have an amazing sense of peace and comfort. We have a huge hill to climb but we know that things can only get better and we will get though this with God and prayers. 

PRAYER... the one word that we have heard and used countless times during this pregnancy. We never truly knew the full power of that word until Monday night when we got that terrible news. Let this be a testimony to how amazing and powerful prayer really is. I am sitting here today writing this with a total sense of peace and we know that we are so blessed to have Adalyn as our little girl and to be where we are today. I know that I have said it before, but I will say it again... THANK YOU to everyone who has said a prayer for our family. Words can not truly express how thankful we are to have had all the support that we have been given over the last several months. Of course we will continue to ask for prayer so that we can continue to stay strong through the tough times that are still to come. We know that we will have our good days and our bad days but with prayer, we will get through them.

So, this is the point where I tell you about the last few days and how we got to where we are now. On Monday, September 17, I started to have some real signs of labor. Somehow, I remained calm and called my doctor's office. Since I had not felt movement for about a week, they thought it may be a good idea to go into the hospital just to be safe. Mark got off of work and we made our way there Monday night. That is where we got the worst news we will probably ever get. The nurse spent about five minutes trying to find a heartbeat, and there was a couple times we thought we may have heard something faint, so we were trying to stay positive. After the doctor came in and did an ultrasound, we then realized that faint heartbeat was probably just my heart pounding so hard. The words that I had been dreading ever since the day we found out about her diagnosis were said: "there is no heartbeat". She had said that with how low the fluid levels were Adalyn had probably been gone for several days. 

To think that she had passed already and that we were not going to get to hold her and feel her beating heart tore us to pieces. I was so angry that I was not going to get to hear her cry or feel the warmth of her body. Surprisingly, I sit here today and tell you that we are okay with how everything happened. To know that she was not going to have to suffer and that she passed away while in the comfort of my womb helped us be more at peace. The fact that we did not have to watch her take her final breath was in a way, easier. 

We ended up going home that night and decided to come back Tuesday morning since I was not far enough in labor, and it also gave our parents time to get up here. Before I forget, I want to stop myself and also let you know that my platelets were at 479,000! Higher than they have ever been... thanks to all of your prayers and my wonderful doctors. Okay, back to where I was... I woke up at 5 am Tuesday morning and my contractions had gotten to be five minutes apart. So, we headed to the hospital a little early. To fast forward a little, I will skip the gory (and painful) labor part.

1:30 p.m..... Adalyn May came into this world. Our nurse, Hope, who was the most wonderful person and nurse I have ever met, took her and gave her a bath for us. After wrapping her up she brought her out for us to meet her. Of course, she warned us that there were a few things to get ready for. She said that her nose got a little smooshed because she had been gone for a few days, her eyes were more like slits, and she was also "softer" since she had not been alive for a little bit. Despite these things and the blood that was coming out of her mouth, we could not have had a more perfect and beautiful baby girl. Yeah yeah.. I know that I am her mommy and I am biased, but I will tell you, she really was perfect. To think that there were so many things that were internally "messed up" you would have never known it!

Her hands.... she had my long "piano playing" fingers (or chicken feet as Mark calls them). They were the cutest things I had ever seen. Oh, and she also had her daddy's crooked pinky finger!

Her feet.... she also had the cutest little feet! We were wondering why her one foot was a little curled, but when her Grandma Cathy came into the room and saw them she instantly shouted "she has Mark's feet!" Apparently that is exactly how her daddy's feet were when he was born.. imagine that! 

Her cheeks... I just wanted to pinch her cheeks because they were so stinkin' cute! They were not that "chubby" but they were adorable.

These are just some of the things that were perfect about her, but I will not spend too much time talking about it.. I do not want to brag too much! So, to sum things up, Mark and I are the happiest parents and are so blessed to have such an amazing family. We got to spend a long time taking turns holding our little girl, and we also got LOTS of pictures. We will ALWAYS cherish that time that we got with her, and I will ALWAYS remember every little feature on her perfect little face until the day that we are reunited in heaven. Thank you again for all of the prayers and the AMAZING support that we have received over the last several months and continue to receive to this day. We would not be here today without our faith, friends, and family. I love you all....

Shortly after her birth... feelings of complete joy and also of grief overwhelmed us.

This was the one thing that I have been looking forward to for as long as I can remember... seeing Mark as a dad and holding his little girl. He was SO PROUD and happy. Never have I seen so much love on someone's face than I did when he was holding her.

You can kind of see her long fingers and adorable hands..

Holding her in my arms was the best feeling in the world... those 9 months of pregnancy and the labor pains were well worth it.

Our precious angel... Adalyn May.

Proud parents!

 

Her cute feet!! Totally her daddy's.. although his are NOT cute!

Proud grandparents.. Adalyn could not have been blessed with more amazing grandparents than them. We are so thankful... we would not be where we are today if it were not for them!

Post Treatment Update

It has been a couple of days since my last treatment, but I wanted to post an update about it. I started the IVIG on Sunday, and when I went back Monday I got a CBC to check my levels. Well... they were up to 117,000. My doctor was very happy that it had already started working within 24 hours. I got my second treatment Monday, but I will not know my levels until next Tuesday. We are just praying that this treatment works, and my levels stay up at least until Adalyn comes. Thank you all again for your support and prayers.

Update 9/7

Update:
 
After going back and forth trying to get a hold of my hematologist (apparently he's very busy) we figured out a treatment plan. I am going to get a treatment called IVIG or Intravenous Immunoglobulin. It is an IV treatment that I get over a period of two days, starting Sunday. I guess it is safe for pregnancy and should not have a lot of side effects. My doctor seemed very surprised that my levels dropped so fast, so please pray that they stay up after this treatment. Hopefully I will have a positive update for you next week. Thanks again for the prayers and support.

 

Another Bump.. Already?

As I was packing and cleaning to get ready to move on Saturday, I heard my phone ringing. When I looked at the screen and saw the familiar number, my stomach immediately turned into knots. It was the doctor's office. Tuesday was my prenatal appointment, and I had gotten a CBC to check my platelets while I was there. My doctor had told me to check the results the next day, but I did not think it was necessary because my platelets had been up to 204,000 a week and a half ago. The doctor had been so impressed by my count that he did not want to see me for another seven months. So, when the nurse told me the reason she was calling, my heart stopped. My levels were down to 54,000... 150,000 less than they were a week and a half ago. She told me to call my hematologist right away because I was going to have to get a different treatment.

All I could think while she was telling me this was I was being punished for something. I kept asking, what could I have done to deserve this Lord?! Just a few days ago I posted about being sure to be thankful and counting all of your blessings. How can I follow my own post when I feel like I am being punished? After not being able to sleep last night, I did a lot of thinking. The Lord is not punishing me.. He is merely testing me. It is another bump in the road that is meant to strengthen us. Mark and I are strong, and all of these things are going to make us stronger. We got a newsletter in the mail from friends back home who have a ministry called SHOP (Student House of Prayer) and on the back of it was a note. They told us how great our faith has been and that these things have made us more mature and Christ-like. It was a reminder that the Lord has trusted us with this little girl for a reason. All of the things that He has placed in our lives has been for a reason, and in the end, we will be stronger as a result of this. Hopefully our journey will be a witness to others and He will use us for His glory.

I am currently waiting on a phone call for an appointment with my hematologist, so we still do not know the course of treatment I will need to go on. In the meantime, we are asking for prayers. Please pray for continued strength and that this health issue of mine will not have an impact on Adalyn. Thank you again for your prayers and support. 

Happy birthday daddy!

Yesterday was Mark's birthday, and he informed me that he got the best birthday present ever. Was it the Red Sox hat and t-shirt that I gave him? Nope. Was it the strawberry double layer birthday cake that I labored over for hours? Nope. He told me his present was our little girl. He had been praying for the last few weeks that she could make it until his birthday... and here she is! If you would have asked us a few months ago if we thought that we would be sitting here today, we would have said no. After getting all of the horrible results back from our ultrasounds, we would not have thought it was possible that Adalyn would still be with us today. How dare we doubt our little girl?! How dare we doubt that she does not have her mommy and daddy's stubborn genes?! She is a fighter and a stubborn one at that. So, last night he got to enjoy a cake from his little girl. It is even decorated so terribly and it looks like she could have made it! 

Of course, there is no way I can give all of the credit to our genes and our little girl. We know that none of this would be possible without His glory and grace. Our little girl has been such a blessing, and we have enjoyed every single second of her presence in our lives. We would not be able to do this without God's intervention though. Even though I still get angry that Adalyn has been diagnosed with Trisomy 13, I am reminded every day how blessed we are to have her in our lives. This little angel was given to us for a reason, and we thank Him for that every day. 

The bigger my belly gets, the more people comment on it. Almost every time I come into contact with a stranger they ask me when I am due and if it is a boy or girl. They almost always tell me congratulations and talk about how excited that we must be. Yes, it is hard to participate in these conversations... it always breaks my heart to talk about her like everything is okay and pretend how excited we are for it. Of course I am not going to tell a perfect stranger the real story of what is going on. The reality is that I have been going about it all wrong though. Why shouldn't we be excited?! Why shouldn't we be so happy?! I will be 36 weeks on Thursday and our little girl is still kicking away. Mark and I feel it in our hearts that we are going to get at least a little bit of time with her. Right there is a reason to be excited! Even if we only get a few hours with our little girl we will be so happy. Why would that not be a reason to celebrate? I think this is what God has been trying to tell me when he puts these people in my life. He is reminding me all the time that we SHOULD be excited and happy.

So, whenever you are feeling down or depressed about something, just remember that you DO have something to celebrate. God has given each and every person so many blessings to be thankful for. Maybe it is something as simple as a sunny day or having good health. Whatever is getting you down in your life, just remember to step back and think about all the good things you have in it and rejoice! 

Post Doctor (8/23)

Just got back from the doctor a little bit ago... we heard her heartbeat and it was music to our ears. Although she is not moving very much, she is still with us. I had my blood pressure checked and weight to make sure I am not preeclamptic or anything. Everything checked out okay.. except for the fact that I gained 4 lbs in 3 days! This medicine is making me retain water at an insane rate! Hopefully after I stop it everything goes away.. including the weight. 

To make things short, thanks for the prayers. So far things are still good! Hopefully we will not be seeing Addy for 6 more weeks (since I am 34 weeks today). 

Another Update (8/23)

This is just a short update, asking for more prayers. Most of you have read my last update on Monday, and are aware of our situation. I started taking the steroids on Monday and now I have not felt Addy moving much these past few days. I am going to the doctor for a non-stress test today at 2:00 and we are very worried. We ask for prayers that my medical problems and medicine have not affected our little girl and that she is okay.

Below are just a few things I wanted share with you guys: some things that we have been doing as a family to enjoy all these precious times we are getting together. We pray that we get some more of these..

We bought the above book for Mark to read to Adalyn. Given his career and his love of construction we thought it would be perfect for him to read to her. The first night he read it she actually started kicking like crazy! It was precious! She is definitely a daddy's girl..

Last night Mark and I had tickets to the Red Sox game. It was Addy's 3rd game but we finally got pictures of us! Even though they lost (like usual) it was still a blast!

I will post an update as soon as we know anything from the appointment. Of course, we have accepted God's plan and know that whatever happens is part of it, but we are praying for some more time with our precious girl. Hopefully I will be able to post good news later, and that Addy may be able to go full term. Thank you again for your prayers and support.

Another Bump in the Road

We have come across another hill on this roller coaster journey of ours these past few days. One week ago I was bragging about how "healthy" I am, especially for a pregnant person. My doctor told me that my iron levels are through the roof, which is abnormal for a pregnant lady. My platelets were also in the normal range, at 160,000 (normal is 150,000 to 400,000). Unfortunately I spoke to soon.. last Friday I got a phone call after my prenatal appointment informing me that my levels have now dropped to 64,000. We scheduled an appointment to get them checked again Saturday in case we needed immediate treatment. They were down to 55,000. So.... after seeing my hematologist yesterday he decided to put me on a very aggressive form of steroid. I only take it for 4 days, because it is about 40 times stronger than prednisone. The side affects should wear off after day 5, so we are hoping they are not too drastic. 

I thought for sure that things could not get much worse, but Mark put it in good terms: we have just come across another bump in the road. Of course I am terrified, for Adalyn's sake. We are asking for prayers that this treatment will not affect her in any negative way, and that the Decadron medicine will bring my platelets up for when I go into labor. We are very thankful for our faith, because if not for it, I would be a horrible mess right now. He is teaching me to trust in Him and to be patient. These things are happening for a reason, and when we come out of all this, we will be stronger than ever. A stronger couple, and a stronger relationship with Christ. 

On a good note, I am almost 34 weeks, so we still have our little fighter. Last week we met with the neonatologist, nurses, and a social worker. We gave them our birth plan and finalized what to expect when I go into labor. They were very sincere and we feel like we are in great hands. When it comes time, they are going to make our experience as good as it can possibly be and as comfortable as possible. These next several weeks are going to need lots of prayers and patience. Again, we are thankful for everyone's prayers and support. Without them, we would not be where we are today.

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!