Fluid Check #1 (Thank God for Ears!)

Today we had our first fluid check, and it went extremely well! Everything we learned and saw today was good news, and although in "typical" pregnancies the information would be considered trivial, to us each thing was a blessing and even a miracle. A little build-up before getting to the news though.

Both Gramma and Papaw got to accompany Keagan, Roy and I to the appointment this morning. We were very thankful that they both could be there and see "Special K" in action. Roy decided to go to McDonald's for breakfast, so before leaving town we stopped there and I got a caramel mocha. (Probably not the most healthy choice, I know...but definitely delicious!) Roy's second mom, Miss Sharon, was working and gave us free breakfast and had much joy making my drink with the hope that it would wake Keagan up before our appointment. Good start to the morning...and we hoped the trend would continue!

The ultrasound technician, Beth, was the same person we had the first time we went down to confirm Keagan's diagnosis. We really enjoy her, she feeds into Roy's sense of humor, and she calls Keagan "peanut" so she's perfect! I asked if she would be the one to scan us everytime and she said that she would, if we didn't mind, which obviously we would love! So that in itself was good news as well.

The point of today's appointment was to check the amniotic fluid level. As I believe I mentioned in a previous post, babies with anencephaly may have trouble or may not have the ability to swallow so it is common in pregnancies like ours for the fluid to build up. This would just cause discomfort for me, and could be drained through a procedure very similar to amniocentisis. There is a range in which the amniotic fluid is considered "normal" and this varies slightly as the pregnancy continues. Currently, it would be best for the fluid to measure between 5 and 25 cm. Beth said that my fluid level was perfect, at 15 cm. We were very glad to hear this! I am not sure if this means Keagan is swallowing fine or if it just has not built up yet, but we are going to hope for the first!

She proceeded to check Keagan's heartrate, as we had this appointment in place of our heart beat check. She offered for us to listen to it, which I gladly accepted as this is the most precious sound in the world to us right now. His heartrate was 138. Beth thought he was probably sleeping then. Within about two minutes though, that caramel mocha must have set in because he would not stop wiggling around! Even though this makes the ultrasound technician's job a little more difficult, it made us grin and chuckle seeing him squirm around. Even Beth enjoyed seeing him move as much as he did. She assumed his heartrate wouldn't be 138 anymore!

She also measured his stomach, spine, and arm and leg bones. All of these measured at least a week ahead of how far along I am! We went from him being a little small at week 18 to measuring big at week 22! Several babies with anencephaly are born a little small, so to see that he was growing big and strong and ahead of schedule was a huge blessing! I was a ten pound baby and Roy was eight pounds, so that in combination with the diagnosis may possibly even Keagan's size out! Roy took the week ahead to mean he could be delivered a week early, which would be the same week as his birthday so that was exciting for him. For me on the other hand, I want to keep him in there as long as possible so I know he is safe and growing and moving. It is amazing to reflect on my thoughts over the course of just four weeks. At first, I didn't want to feel him constantly moving and see my belly grow with him inside, and now I want to keep this feeling forever!!!

The most exciting thing for us today, and what we consider to be a little miracle was to see Keagan's ears...yes, his ears! From our first appointment on the third, they had said if you put your index finger right above your eyebrow and your thumb above your ear then continue that angled line around your head, that that would be the amount of Keagan's skull that was missing. And actually, at our last ultrasound just about two weeks ago, I personally couldn't see any white outline on the back of his head. To me, that meant there wasn't any skull on the back of his head until about right above his neck. When I asked the technician that day how much of the skull was missing on the back of his head his response was "Enough." Not very helpful or really sensitive, for that matter, but oh well. Today, we saw an outline of the back of his skull!!! I confirmed with the technician and she said that it looks like it goes up to about the same height of his ears or a little higher. Excellent news to us! Keagan would not show up his perfect little face, but from the back of his head, we were able to see both of his ears, fully formed! This probably doesn't seem like a big deal, but some babies with anencephaly are missing the top part of their ears as well, but this just shows that there is more there with Keagan! The technician even implied that the front of his skull (above his eyes) goes up a little further than we previously thought as well!

Punctuation of the night: ! We are very excited about all of these blessings. They said that his skull would not continue to form, and we are not saying it did or did not. Perhaps the views before didn't quite show this information, or perhaps God is at work. Either way, we are very happy with this new information and thank God for Keagan's heartrate, the level of amniotic fluid, his size, and the amount of skull that he has!

Pictures (top to bottom): Muscle man Keagan showing off his guns, cute little baby butt, index finger on his chin thinking about whether he should flip over and show us his whole face, two fully formed ears! with a hand on the side, profile view of a perfect little foot, side view showing the back of his skull, and oh yeah...he's still a boy! (He was shy in showing us his face, but obviously not with other parts of his body.)

Our excellent appointment was followed with my AMAZING husband bringing me Subway to school and surprising me a beautiful footprint necklace. This will be worn everyday!

Tonight, Gramma and Papaw came over for dinner and Keagan showed his appreciation for them coming to his big show today by letting them feel some kicks and movement. This was the first time Papaw felt him and the second time for Gramma so a very exciting experience.

It has been a great day and again we just thank God for all He is doing in our situation.

Keagan's First...

Super Bowl party!

While we did not take Keagan out of town or anywhere new this weekend, we did something little, but still memorable and special. Roy and I are big time family people. We love getting together and just hanging out with the ones we love most, so when we were invited over to Gramma and Papaw's for a Super Bowl party today we gladly accepted.

As I have mentioned before, Keagan is such a lucky boy. His entire family loves him so much, and just the same as if he did not have anencephaly. Even though I was a little sad at times, we had a great time and were glad that everyone, including Keagan, got to spend this quality time together.

I always try to go over early to help mom prepare meals. It worked out today, because we went to church and then I just stayed at their house. Keagan didn't have much choice here...he got roped into being in the kitchen all afternoon with us :) Because I always help with the food, I have several times pictured bringing my baby over with me and having him in the kitchen with us while we cook. I could not wait for this, as trivial as it may seem. I enjoy cooking with my mom so much and I was looking forward to creating these memories with my child. While Keagan will not be able to physically be with us for these memories outside the womb, I know he will always be with us in spirit. 

 

We had mexican food and everyone was hoping that the spiciness would get Keagan moving. Well...it had no effect on him. Papaw and Aunt Jessica will have to wait to feel him moving. I wish they were here with me now, because he's giving me quite a few "love taps!"

 

Baby Keagan with his cousins, Carson and Drake. The three boys are about a year apart (Drake - 2, Carson - 8 months, Keagan - 22 weeks). I have found that being around newborns and infants since finding out about Keagan's diagnosis is difficult for me, but my love for my nephews and knowing Keagan is getting to spend time with them completely wipe out any sadness when I am around them. It is however hard realizing they won't get to grow up together and cause all kinds of boy havoc at family get togethers. Knowing my sister and her husband, they will make sure the boys know about Keagan when they are old enough to understand and they will continue to help make memories of the three of them while we can. (The last picture is really just a cute picture of Carson and Drake - notice the hair pull! Now, that's love!!!)

Before they had to leave, Carson obvioulsy had to check my pulse to make sure I was okay and have a heart-to-heart with me to show that he loves his Aunt Jenny and cousin Keagan. I love this little guy so much, and know Aunt Jessica loves Keagan just as much!

 

Oops. Keagan and I were able to enjoy the first quarter and woke up in time for the half time show. Just a little cat-nap never hurt anyone, right!?

Word of the night: Love. I realize how many times I used the word, but that is the common theme of our journey, Keagan's life and our family in general.

And the greatest of these is LOVE

The title of this post comes from a bible verse (1 Corinthians 13:13), and although is not necessarily meant to refer to gifts this thought comes to mind when I think of everything our family and friends have given us since finding out about the diagnosis of our sweet baby.

We have received some very special, tangible items that will be so important in helping us to celebrate and remember Keagan and we are very thankful for these gifts. I have taken pictures of these gifts and shared them below, by no means with the intention to influence others to send us anything, but instead to thank the individuals who sent them to us (I am also working on thank you cards, slowly…), share the beauty of the gifts and the thoughts, and to document for our family what special gifts Keagan has received.

This hat is from Keagan's cousin, Carson, and Aunt Jessica. Roy and I have purchased a very special and cute outfit for Keagan's burial, but could not find a matching hat. When I was talking to my amazing big sister about this, she thought of a hat of Carson's. She offered to give this to Keagan, as it would be something that he would always have from them. This of course touched my heart and the thought brings me to bittersweet tears to this day. What a perfect gift! (Gramma is working on taking the hat in a little as it will be too big for Keagan when he is born.)

This blanket is from Keagan's great aunt, Paulette. We went shopping for a blanket for Keagan to be wrapped in when he is born, but could not find anything that was perfect enough for our special baby. I sent my very skilled Aunt Paulette a message asking her if she would mind making one for him. She replied that she would be honored. She made this blanket in a very short amount of time, as we were not quite sure when we would deliver at that point. This blanket, as you can see, is absolutely beautiful and I know just how much love she put into making it. This may sound silly, but when I opened the package, it smelled of my Aunt Paulette and Uncle Doug which was comforting to me. I know this blanket will bring comfort to Keagan when he is born and also to us as we hold on to it after he is born and are able to smell his scent.

 These gifts are from Keagan's Gramma and Papaw. I have already posted about these gifts, but I just wanted a chance to share just how much my parents are doing for us and for Keagan. They always provide emotional support, but have also given us several items. From the OSU basketball tickets, to a Dave and Busters gift card, to several items with which we will make keepsakes, Gramma and Papaw have poured out their love to all three of us. This is no surprise. There have always been wonderful parents, and now are the perfect grandparents for Keagan!

This hat is from Keagan's Aunt Becky. As I mentioned in a previous post, Roy has frequently called baby Keagan "Peanut." One night she was sending me links to hats, knowing that we were looking for a few special ones for pictures when Keagan is born. I was replying how much I loved all of them. Unbeknowst to me, she ordered  the perfect one and had it delivered to our house. Even though she lives out-of-state, she does everything she can from that distance. She is always checking in with us, sending messages or quotes, and I know she thinks of all three of us frequently. Her love is felt hundreds of miles away. 

This frame is from one of my co-workers, Rainie. Keagan's hand and footprints are going to be so important to us and we have several things to try to capture them. Rainie did not know, but we were looking for a frame to display them. She brought this in one morning before school, just a few days after we had been shopping but failed to find one. It is absolutely perfect and I can not wait to show off the perfection of Keagan's prints in it.

This book is from one of my former volleyball teammates, Lisa. She saw our post about children's books and wanted to send us a book. This was a total surprise to us. To be honest, the billing address was addressed to her husband Joe and I could not make the connection of who it was from. :) Lisa had asked my mom for our address so mom was able to let me know, and I received a card from Lisa a day later telling me about the book. I just wasn't patient enough! This book has a beautiful message, but one part sticks out to me. It reads: "Umm, Mama? I was wondering...Did you ever want a different baby? One like Samuel the seal or Fredrika the fox?" "Never," Mama said. "Never, ever, ever. Your papa and I wouldn't trade you for the world." "Why?" Little Cub asked. "Why? Because God gave us you." God gave us Keagan and just as the Mama Bear says in the book, we wouldn't trade him for the world.

This blanket is from another one of my co-workers, Jan. One day, she told me that she was making a blanket for Keagan. Earlier this week, she brought in a gift bag. I told her I was only going to look at the blanket because I thought the card would make me cry, and boy was I right! The blanket in itself is beautiful, but the meaning behind it is amazing. In the card, Jan talked about how she has been working on these pieces for several years but did not know why. She had been making a plain white blanket for us, but did not feel it was special enough. These pieces came back to mind and she sewed them together. She notes the way Keagan's life has interwoven lives (same as the stitching to hold the pieces together), brought color to our lives and the world (same as the nine different pieces), and he's unique but that is what makes him perfect (same at the mistakes/imperfections in the blanket.) Keagan will also spend time in this blanket once he is born and it will also be a life-long keepsake that shows so much meaning and connection to Keagan's life.

I collect Willow Tree angels, and the four above actually came from three different people. The first figurine is from Keagan's Gramma Halterman, the second and third figurines are from Keagan's Daddy, and the fourth figurine is from Keagan's Grandma Burton. As you may have read in my "About Me" Roy's mom passed away in August. Prior to her passing, she bought so many things for her future grandbabies and was so excited to meet them. Although she is not physically present, we know that she is constantly with us and constantly watching over us. She loves Keagan and knows exactly what is going on. The last figurine she purchased for me, I believe in her hometown Marietta. There is so much beauty in all of these figurines, but the last one is especially important to us. Not only is it from Keagan's very special Grandma who he will get to be with in heaven, but it also represents our perfect family of three. The fact that the parents are holding a baby will be the same as the only time we get to hold Keagan, when he is a precious newborn baby. I am sure this time will always be in our hearts and this figurine will be a reminder of that time.

 

We have also received several cards. Thanks to my mom, I am totally a card person. It is a family joke that she will go to ten different stores and spend an hour in each one to find the perfect card. The effort, time and thought makes the cards even more special and appreciated. Since I was college, I have saved every card I have received. Roy will tell you I am on the verge of being a hoarder in this sense, but I can’t bring myself to throw away something people have put so much thought into and that I find comfort, joy and/or love in. I will say the cards our family and friends have sent us and the words they have written have been perfect. Thank you to those of you who have sent us cards!

 

In this technology based world, we have also received several emails, text messages and Facebook comments that have touched our hearts deeply. Some of you even call our families to check how things are going with us without us knowing. We have reconnected with people we haven’t talked to in a while, met new people, and grown closer to family and friends through our situation. We appreciate every one of you who have sent us some type of note and let us know you are thinking of us and praying for us. We are doing our best to reply to each one of these, but even if we don’t please know that we have seen all of your messages and are so thankful that you would take the time to send them to us.

Back to the title…and the greatest of these is love - the basis of all of the above gifts, whether tangible or word gifts (thank you college roomies for introducing me to this phrase!), is that they were sent out of love. We have been overwhelmed with support, and even though we have received so many things we could probably tell you each gift or about each conversation we have had because they all mean so much to us. With that being said though, the overwhelming message is the love you all are showing for Keagan and our family, and to us, that is greatest thing you could ever do. Even coming to our blog and reading our posts are special to us, so thank you for doing that! We are amazed at the number of views our blog has received and are so happy to share Keagan’s life with so many people. It is also very comforting to know so many people are thinking of us and praying for us. As I have told several of you, knowing of how many people are sending up prayers brings so much added peace. Although Keagan may never live long enough to understand how each of one of you were involved in his life in some way and how each of you showed so much love to him before he was even born, I believe he can feel the joy and love that I feel as a result of your demonstrations of love.

These words in no way express how truly thankful we are for everything each of you are doing for us and with us, but we would just like to say thank you for being involved in Keagan’s life and showing him and us such a great magnitude of love, the greatest gift in life.  

Keagan's First...

OSU Basketball Game!

Really, this post should be titled "Our Family's First..." as Roy and I have never been to an OSU game either. The game we went to was OSU vs. Wisconsin last night and it was the most amazing experience! We had such a great time and were very happy to be able to create this memory as a whole family. Keagan's Gramma and Papaw bought us the tickets to the game, which we are incredibly grateful for. They have been to a few games before and knew how memorable it would be for us to have this time with Keagan, and how fun the game would be in general. My parents are absolutely amazing and are doing everything they can to help us along this journey. We love them so much and know Keagan feels the same way!!!

My Aunt Peggy works at the Schottenstein Center and she did everything she could as well to make this a special night for all three of us, and, once again, it was AMAZING! She works on the floor by the student section and the band. It was so much fun to see her working and interacting with people she has made relationships with just by being there. She is like a celebrity there - everyone knows "Peggy" :) We felt special just because we knew her, but she did so much more to make us feel special. She gave us a few extra perks, a goody bag (there were sour gummy worms, but they didn't quite make it to the picture below!), and eventually got us from the 3rd level where our tickets from mom and dad were to the first row on the floor right beside her!!!

I hope you can tell from reading and how many times I have said amazing and special that this was the perfect night for us and we owe it all to my parents and Aunt Peggy. Towards the end of the game, it was getting loud in the gym and I was standing up and sitting down frequently to cheer. Keagan must have felt the excitement because he started kicking...HARD. That is such an amazing (sorry, not much variety in my word choice tonight...) feeling and I love it everytime. There were times last night where he would kick out of nowhere and it would make me jump because of how hard it was. Even on the car ride home, when I very rarely feel him move, he continued to make his presence known. He must have loved the game as much as Mommy and Daddy did. Once again, thank you to our awesome family members to making this memorable night possible. We love you and baby Keagan, we all love you!

*I haven't quite figured out how to post and format pictures on here, so I apologize for the way these are arranged.

 

Heartbeat Check #3

We had our weekly heartbeat check today (Mom was able to come with me again, due to Roy's work schedule), and once again Keagan's heartbeat was easy to find and measured within the "normal" range. With a heartrate of 158 today, I am at so much peace knowing he is continuing to grow and develop well. As you may have read through our posts, baby Keagan's heartrate has consistently been at the higher end of the 120-160 range. According to the old wive's tale, this would indicate that we are carrying a girl. Well don't you worry...Keagan is ALL boy; his heartrate obviously doesn't indicate his gender, but what it does show is that he is strong and he is a fighter!

An ultrasound picture from our Jan. 3rd appointment

(Sorry for exposing you like this baby!!!)

Goodness...I can't get over how sweet and precious our baby is - we love him so much! We are proud parents and so happy to share his life with so many of you.

When I was younger, I used to love writing poetry. I am currently working on a poem for our baby boy and can not wait to one day share it with all of you. I hope I am able to find the words to express my thoughts and feelings and unconditional love in a perfect way to my perfect boy. Until that day, here is a simple quote from a wise character...Winnie the Pooh, of course!

How true this is, especially with our little guy. Measuring the size of a banana this week, sweet baby Keagan has filled our hearts beyond our imagination.

 
*Next week we have our fluid check as opposed to a weekly heartbeat check. We will still post Monday night about the findings and with Keagan's heartrate for those of you who check on Tuesday mornings :)

Keagan's First...

Night as "Big Man on Campus!"

Roy graduated from Wright State University in 2007. As most colleges are, this was a place where he met several people who are now his best friends, had a lot of fun times and created some unforgettable memories. We have gone there several times as a couple since we have been together and always enjoy ourselves.

This past weekend was our four year-first date anniversary. Four years ago on January 24, Roy came up to Bowling Green, where I attended, to play in a volleyball tournament with me and our relationship grew from there to the amazing thing that it is today. Instead of going to Bowling Green this weekend, we went back to Wright State to celebrate our anniversary and this also gave Roy a chance to "walk down memory lane" with his precious first baby. (Don't worry...Keagan WILL be going to Bowling Green within the next few weeks as well!)

I asked Roy to help me write this post, because even though this was a great time for me, I know it was an incredibly important and memorable experience for him. (His comments are italicized.)

With the snow on Friday, we were worried about the drive down but the roads were fine and even if they weren't, we would have found a way to get there.We stayed in Dayton all weekend.  Friday night we went to La Rosa's. This is an Italian restaurant, which is our favorite kind of food! Going to La Rosa's was something my friends and I did several weekends over our college careers. We would always order appetizers and watch sports, which I know Keagan would have loved to do at WSU. 

To start off the day Saturday, we went to Build-A-Bear at the mall with Keagan's heartbeat recording. I have only been there one time several years ago, and Roy swore he would never go into this store. He broke the rules for Keagan, but he stuck by his guns that he would never do that for me. I think I could talk him into it though... :)  We had so much fun and we absolutely love the bear we ended up with! The bear we picked is so soft and adorable. Several times Roy has referred to baby Keagan as our "peanut" so when we saw the name of this golden brown bear include "Peanut" we knew it was perfect. We picked out our Keagan bear, put his heartbeat recording in the hand, dropped in one heart from each of us and then stuffed him. During this time, the worker was asking questions about our baby. I gave the standard answers - boy, due June 5, Keagan, feeling good. My heart was torn as to whether to share more and allow Keagan's life to hopefully touch someone else's once again, but I decided not to as we were having so much fun and I did not want to have someone innocently apologizing about our situation as we tried to celebrate the love of our lives. She was a very sweet girl and showed us so much love even without knowing Keagan's story. We proceeded to the "fluff me" station where I made Roy give our bear a bath. He, of course, was his goofy self and washed under "Keagan's" armpits and behind his ears. We tried to pick out an outfit but nothing seemed to be perfect enough. I do plan to get a hat for our bear though, as Keagan will very frequently be wearing a hat after he is born.
What a fun experience! And once again, thank you to Nick and Andrea for this wonderful and thoughtful gift!!

We walked around the mall a little, ate at the food court, and then went shopping at a few other stores. I was able to get the ink remover for when we create our keepsakes at the hospital and also some CUTE baskets to take all of our things to the hospital in.

After a nap back at the hotel, we went to Linh's. This is our favorite restaurant in Dayton. We had a scare when we pulled up and the "Open" sign was not lit and there were no cars in the parking lot. Luckily, there was a sign on the window saying they just moved locations. This delicious Chinese/Vietnamese restaurant went from a hole-in-the-wall to a 10-minute wait to even get a table strip-mall restaurant. 

After our wonderful dinner, we headed to campus for the Wright State vs. University of Illinois Chicago boys basketball game. The crowd was huge and it took a long time for us to even get tickets, but the wait and the cold were totally worth it!

One of the main things I enjoyed from Wright State was going to the basketball games and cheering on the team with my friends. This meant a lot to me when I took Jenny when we were dating, and it was something I looked forward to doing with my child as soon as we found out we were pregnant. Even though the sad reality is that Keagan will never get to go to college and graduate, it was still a dream  come true for me to be able to take my son to a Wright State game. We were able to get a free shirt and towel and these items will be forever cherished as memories of what we got to experience with Keagan. Being able to take him into the gym where I worked and played volleyball and practiced cheerleading are memories I will never be able to replace. The tradition still carries on.

Wright State lost the game on Saturday, but it was a great time and Keagan seemed to enjoy the loud band - kicking and moving around a lot! That night, I was able to catch him kicking and my stomach jumping on video for the first time. Another moment that will be forever remembered.

Before finishing this post, I wanted to open up my heart and get some thoughts out there as it really is therapeutic for me. I noticed a trend in the past two weekends - I seem to have a very rough day the day after we have one of our outings with Keagan. I have had so much fun celebrating his life and getting to share these experiences with him and I love planning more for the upcoming weeks. But it seems like when we get home, the reality of what we are doing hits me...hard. We are doing "Keagan's Firsts"...but they are likely his only's as well. Our baby will not get to experience so many of life's joy...nor life's struggles. We will not get to teach him lessons through the ups-and-downs, see him take his first steps, hear his first word, and see him go to a school or college of his own. This is so hard to understand and to handle. Several people have told us we are strong, and we appreciate the words and encouragement more than anyone can understand. In all honesty though, we are doing our best to be strong, but there are times when I feel as though we're hanging on by a thread. We will continue to hang on with all of our might (and our faith) and we will not stop sharing life with Keagan. His life and our love for him are what keeps us going each day. He is teaching us and those around us lessons that are probably more important than any lesson we could ever teach him. One thing we want to show our baby and we believe he feels is that love is the most important thing in life, that we love him with all of our hearts and "Love never fails."