Fluid Check #2

We got to see our little bundle of joy again today, and he's still as cute as ever. Keagan's cousin Carson even got to come see him :) Not only that but everything medically seemed to be on target as well. Keagan's heartrate was 152; still going strong! For the first time, our technician, Beth, pointed out the four chambers of Keagan's heart. This was definitely a good thing. He is measuring very close to his gestational age, except for his legs - they are measuring a week and a half ahead! Beth also pointed out that our "peanut's" feet are also really big. I guess he's taking after me there! The point of today was obviously to check my fluid level, but we actually all got wrapped up in looking at baby Keagan that we all forgot about checking it. Beth left and came back in saying she was going to have to scan again to measure it. We were definitely okay with this because it was another chance to see our sweet baby. My fluid level ended up being 20. That is within the normal range, but is approaching the higher end. Our doctor said it was normal for fluid levels to fluctuate (as it was 15 last month), so my hope is that my fluid level is not going to steadily increase but will instead fluctuate slightly in either direction so it will still be considered normal.

Mr. Keagan had his head buried against me again, but today was one of the few times we have been able to see his whole face and what an adorable face he has. His lips and nose, as I said last week, are absolutely perfect. There was one point when we were trying to get a 3D image of his face that he put his open hand in front of his face as if to say "no more pictures!" Gosh. He's just so cute.

Roy and I were a little sad when we left today's appointment. We were and continue to be thrilled that Keagan is still growing and his heart is beating strong and he is moving and happy. We are also happy my health has not been affected. However, we were just hoping something would have improved from our previous appointment. This is not medically possible, but ALL things are possible with God and that is what we hold on to. We were hoping to hear them say they saw something they hadn't seen before as we have heard at every ultrasound but that wasn't the case today. When I told my mom this, she pointed out all of the positives from today and the fact that we did see the four chambers that hadn't been shown to us previously and with these comments I was back on the joy of the perfect baby which Roy and I have been chosen to parent. We love you Baby Keagan and are so thankful for you!

Four chambers of his heart

 

In case anyone was worried :)

This is kind of hard to see, but this is when he put his hand in front of his face :) His arm and hand are right in the middle of the screen.

Precious profile



Keagan's First...

Boy Scout adventure!

Camp Lazarus held it's annual Maple Syrup Festival this weekend, so we took advantage of this opportunity to have Keagan participate in Boy Scouts. (Thanks to Gramma, who heard about this on the radio and shared it with us!) When I first asked Roy about going his response, once again showing his sense of humor, was along the lines of "you want me to go out in the middle of winter to tap trees, enter a pancake eating contest, and throw tomahawks?" He gladly went for his little boy though, and we had a lot of fun as a family!

Here are some pictures from our day with some little fun facts! (I'm getting back into "Boy Scout mode" so get ready for a maple syrup lesson!)



There are 700 taps at Camp Lazarus. Trees can have one tap per every ten inches in diameter, but should not have more than three because this would drain the tree of all of its sap. It takes 56 gallons of sap to make just one gallon of syrup. The sap is collected from the buckets every two to three days so that it doesn't spoil and taken to the "sugar shack." There it is brought to over a specific temperature based on the barometric pressure that day. Today it had to be boiled at 216 degrees.  There was all kinds of smoke billowing out of the sugar shack and condensation dripping down on us from the roof when we were inside.

The picture to the left was of a typical campsite that may have been used in the pioneer days. There was a cute little boy who explained the bed to us, but I saw bread and jam by the campfire and got distracted so we didn't stay there long. Oops! To the right is Keagan and I in a cute little cabin with hand-made furniture and toys. If there hadn't been so many people inside I was going to climb up to the loft as that's where all of the kids were, but I decided not to :)

 

Outside of the cabin, we had the opportunity to cut some logs using a hand-saw. There was a two-person saw and a one-person saw. Lucky for me that the one person opened up first, so Daddy got to do this one for us! He looks so natural, right!? We then were able to take our piece of the log to get it branded by a boy scout. He could not get it to brand quite right, but we told him it was perfect and we loved it. He was so shocked. I thought it was kind of poetic. This was Keagan's first day as as honorary boy scout (in our minds), and while his appearance isn't the same as "typical" babies, he is asbolutely perfect and we love him even more because he is special. 

 

We enjoyed pancakes and "bug juice" for lunch. I couldn't get Keagan in this picture, but I hope he enjoyed them as well! Roy asked if the syrup had been made there, but the little boy scout who served us said "No, this is GFS brand." We both chuckled at this, and who knows, Keagan seems to like smirking as well, so maybe he did too! The pictures to the right are our souvenirs from the day - our branded piece of wood, Keagan's first boy scouts patch, and stickers for his scrapbook.

 

What a great memory for our family! We really enjoyed ourselves at Camp Lazarus today and are glad Keagan had an opportunity to experience this first!

"YOU knitted me together in my mother's womb"

This Psalm goes on to say "I praise You, for I am fearfully and wonderfully made." Well, today we are able to praise God once more for Keagan after being able to see the beautiful, adorable, cute, funny (how many adjectives can I use?) little person He has formed! Keagan is truly a wonderful creation!

Within a week of Keagan's diagnosis, I was connected to some amazing women through a Facebook support group, all of whom who were or currently are pregnant with babies with anencephaly. This has been a wonderful place for me to go to ask questions or just to be encouraged by people who truly understand what we are going through. I am not sure at what point, but early after the diagnosis I asked what families had done as keepsakes of their babies. I received several helpful responses, but one mother in particular sent me a message with a very detailed list of what she had done for her son. (I am so grateful for Bethany and the friendship we have formed!) In this list, she put the website of an organization called Sustaining Grace. http://sustaininggrace.org/ This organization was founded by a couple who lost their daughter due to a terminal diagnosis, but prior to that were able to have several 3D/4D ultrasounds to bond with their baby. It is now the mission of the couple and the organization to provide free 3D and 4D ultrasounds to families who also have learned that their babies have terminal diagnoses. On their website, the couple notes that they want families to be able to see "their little miracles full of energy and life." I contacted this organization and we are so incredibly thankful that they were willing to fund this ultrasound for us and allow us to experience the joy and seeing Keagan "full of energy and life." This was truly such an amazing gift and words can not express our gratitude or the joy we felt today. So thank you to Diane and Scott from Sustaining Grace!

After much anticipation (and anxiousness to be honest), today was the day we had our 4D ultrasound at a place called "First Expressions." Several of our family members and a few friends were able to come and enjoy the "show" starring baby Keagan. It was truly like he was in a movie, as the ultrasound was shown in three locations with one of them being projected onto the wall. (All we needed was popcorn, as Papaw pointed out!) Gramma, Papaw, Uncle Brian, Aunt Helena, Papaw, Sharon, Dustin and Bri we are so glad you were there to share this with us! We had other family and friends who could not be there, but we have no doubt in our mind they wanted to be there and we know they love us and Keagan very much! The ultrasound technician was very pleasant and had fun with Keagan and all of us. She had been informed of Keagan's diagnosis prior to our appointment and was very helpful in trying to answer questions and get different views for us.

Even though he would only let us see half of himself, Keagan is truly beautiful and perfect! He really has a fun little personality, and we noticed he takes after his daddy in several ways, but mainly orneriness! We got to see him do some awesome things which we count as blessings - he opened his eyes and his mouth and even tried to stick out his tongue a little, was moving all around, smiled, and counted to two...then skipped to five. I want to build on each of those a little just to demonstrate the importance. The ultrasound technician did say that Keagan's eyes are bulging out a little, as is common for babies with anencephaly but the fact that he was able to open the one that we could see is a good sign as babies with anencephaly are not always able to open or close their eyes. I am hoping that him opening his mouth and the fact that he had hiccups the other night are good indicators that he is swallowing, which, again, is not always the case. I think the hiccups are a better indicator; I highly doubt opening and closing his mouth shows one way or another, but it was adorable! Moving around...well that's just awesome and so fun to see - nothing to build on there :) I did have a coffee on the way there, hoping that would make him active, however I don't really think he needed that. When he smiled...what a great memory! Those of you who have seen my handsome husband, may know that he doesn't have the smallest lips in the world. We noticed Keagan's lips were a little big as well, to which Roy responded "Don't worry Keagan, the ladies like them!" This of course got us all laughing or at least smiling, even Keagan! Roy is over the moon that his son thinks he is funny :) And his perfect little fingers. Some babies with anencephaly also have trisomy. A common characteristic of this is to have crossed digits. We are not entirely sure if Keagan has any fingers or toes crossed, except for on his one hand that he wanted to make sure we saw...so he kept it by his face the whole time. I believe the last time the technician repositioned the probe and changed from 2D to 4D, Keagan put up one finger, then two, then went straight to five. We're still working on the counting, but all of his fingers looked perfect! :)

When the technician said we were almost done with our session, I asked her about seeing if there was skin covering his whole head and how high his skull went on the backside of his head as these are things that would be best seen in a 4D ultrasound. She could not get a very good view of the back of his head, but she didn't think there was much skull there. We are praying that was just the view or lack thereof because we have seen the skull on the back of his head with other ultrasounds. On the other hand, we were so happy when she said it looks like there is skin covering his entire head! Some babies with anencephaly truly have an opening, for lack of better words, where their brain is exposed. We were expecting the same thing with Keagan, but she believes there is skin all the way around!! This is a great blessing and while it may not change the ultimate outcome, we are hoping it will help some. By having skin on the top of his head, my understanding is this will help protect his brainstem from being "corroded" by amniotic fluid currently, and once he is born will help maintain his body heat and decrease the risk of infection. This was a huge blessing!

Well, I have rambled on enough...without further adieu, I present to you our fearfully and wonderfully made son, Keagan David!

Perfect little nose and mouth

Roy thinks he has my nose :) That is his hand, ready to fight...or just give Mommy a little tap, to the right of his face.

Smiling because of his silly Daddy! Love his chubby cheeks!!!

Little piggies, another body part ready to give Mommy a love tap

With his eye open! His features are so defined

Little cuddle bug - right up against me (not the best for ultrasounds, but nice to see he wants to be right by me!)

Counting...1....

2...

 

And with baby Keagan's peace sign, we say good night!

Keagan's First

Musical!

My mom and I love going to plays, musicals, concerts....anything of that sort. So when my school announced there was going to be a musical I thought this was a great time to spend with my mom, but could also double as one of Keagan's firsts! The musical was "The Little Mermaid." I was thinking this was mainly for girls, and that Keagan may not have wanted to go there if he was given the choice, but I was glad when I saw several little boys there as well.

My school's seventh and eighth grade students put on a wonderful show and really impressed us with their singing talents. We really enjoyed the performance, and I loved getting to share the night with two of my favorite people - baby Keagan and Gramma.

When I got home, Roy was watching Hope Floats. (Sorry if you don't me to share that Roy!) Just as I was preparing to write this post, the following line was said:

Beginnings are scary, endings are usually sad, but it's the middle that counts the most.

Wow! How true this is on our journey.
-When we first learned that baby Keagan had anencephaly, there were so many unknowns and it was so unexpected. Those first few days were very scary, and to be honest there are still times that we are scared.
-I'm not sure if I have shared this before or not, but we try not to think too much about the expected outcome for Keagan's life. It is not that we deny the reality of his condition, but as I'm sure you can imagine, it is extremely hard to process and to come to reality with. Not thinking about it too much helps us in several ways, but I also wonder if we should be better preparing ourselves for that day right now. Even if we do everything we can to prepare mentally, emotionally, and even make the necessary arrangements, I still do not think we will ever be truly prepared for that day. The "ending" of Keagan's earthly life and the days, weeks and years to follow are assuredly going to be sad, but I pray for peace, strength and also joy for our family at that time. (I will add here that we still hold on to the fact that God has the ultimate say and we believe with our whole hearts that He can heal Keagan entirely if He choses to.)
-This time right now is the "middle." That is why we live for each day and do what we can do to enjoy every moment. This is the time we have with our son, and ultimately these are the memories that I think and pray will be engraved in our hearts and minds forever, rather than those first few days or the pain of his passing. "Keagan's firsts" and each minute we have with him while he is in my belly are what count the most.
I am going to close with the next line that Sandra Bullock goes on to say in the movie:

You need to remember that when you find yourself at the beginning - just give hope a chance to float up.

Heartbeat Check #5

Keagan's heart rate today was 138! Our little guy is still doing well - praise God! I did have a little scare at the appointment though. The doctor had a difficult time finding the heartbeat. I could feel Keagan moving just two minutes prior to the doctor coming in, and started thinking as he tried to find it "Wow. Could things have changed that quickly?" I stared up at the ceiling and kept listening for that wonderful sound. The doctor moved the doppler probe over my stomach very slowly, top to bottom and side to side. It felt like it took thirty minutes, but I think it truly did take about three minutes. At one point, my doctor said "I think I keep hearing it, but your heartbeat is so loud." Finally, he found it and I was so relieved. We heard the strong beat loud and clear. The doctor said my heartbeat had been in the foreground, thus making it difficult to hear Keagan's and at some point they switched positions. I don't quite get that, but I don't really need to because I know Keagan is doing well and that is what matters to me. As he was trying to get the rate, Keagan's heartbeat faded (the actual sound, not the rate) so he used the probe to shake my belly and it came back loud and clear again.

I am so thankful that today's appointment had a good outcome, even with this scare. In those three minutes, I realized the depth of my love for my son. I definitely knew that I loved him with all of my heart and I have tried to show him my love through my thoughts, words and actions. But this scare, that I now know could have been prevented by some patience, showed a whole other facet of my love. I am struggling with how to put my emotions into words. I felt like I was on the verge of great heartache, but the root of it was great love. People always say you instantly fall in love with your baby when you see him or her for the first time, but I am already in love with sweet baby Keagan.

I heard this song on the way home tonight, and I know not all of the lyrics apply to our situation - actually only a few of them do - but the one line that stood out to me was the title and part of the chorus: "Only God Could Love You More." We love our son so much that we do believe that God is only one who could love him deeper and wider and just overall more than us.

Thank you for your continued prayers; we are always in need and always appreciative of them!

Love one another

The title of this post is a command that comes from God, and sometimes it may be difficult to really love one another. We are to love our family, our friends and even our enemies. We are also to be patient and gentle with one another (Ephesians 4:2), be kind to one another (Ephesian 4:32), pray for one another (James 5:16) and show compassion to one another (Colossians 3:12). Once again, we have been amazed at how people have loved us - family, friends, acquaintances, and even strangers - through all of the acts above. I believe God has much joy in our situation right now. While I believe He does not like to see us hurt, I know He loves us and I know He has placed people in our lives to show us His love and is proud of His children for doing that so wonderfully. We are so incredibly thankful for you just being with us on this journey!

We received some amazing gifts over the past few weeks. These are aside from all of the hugs, comments and prayers we have received which too are so meaningful and helpful.

 

These beautiful necklaces were gifts from our friend, Peggy. We have recently started going back to the church in which I grew up and we have been surrounded by some wonderful people, including Peggy. This morning at church she gave me a gift bag and said "This is for you and your mom." I opened them as we left and saw these lockets. Gramma was instantly brought to tears as I was just amazed with their beauty and Peggy's thoughtfulness. She had mom's engraved with "Keagan's Gramma" and mine says "Keagan" on the front and "Peanut" on the back :) I still can not get over these necklaces and Peggy's love towards us. Thank you so much Peggy! We will wear them proudly!

 

 

This angel figurine was a gift from our friend and Roy's co-worker, Ashley. The perfection and beauty of this angel, even though it is a girl, reminds me of Keagan. In God's eyes and in our's, he has been made just the way he was supposed to be and was done so in God's image - there is nothing more perfect or beautiful than that! At the same time, it reminds me of my mother-in-law who is constantly watching over us from Heaven and caring for all three of us (and many more) as this angel appears to be caring for the bunny. Thank you Ashley! It has been added to the collection :)

 

This is a beautiful hand-made prayer shawl from my cousin, Carrie. I am honored that she made this for me and have so much peace and joy knowing how much love went into it, but also that the women in her church prayed over the shawl and prayed for us before sending it my way. Carrie told me she wanted me to feel wrapped in God's love as I used this shawl, and I truly do. I love wrapping it around me and just sitting in the quiet or just having it beside me as a reminder of both God's love and the prayer warriors we have. Thank you so much Carrie!

I am in love with these little hats made by Alisha with Livie Bean Designs. I met Alisha through a craft show that we were both a part of and absolutely love the items she makes. I was having trouble finding hats for Keagan so I called Alisha and she lovingly agreed to making some specially sized hats for our little guy. I picked out a few that I liked (I have special plans for the aviator hat!) and she got them to me so quickly. She sent me the sweetest message and told me she would like to do this as a gift for Keagan. This still brings me to tears. I have met Alisha only one time, but she went out of her way to make and deliver these incredibly crafted and incredibly meaningful hats. What an amazing person and amazing gift! Thank you Alisha!

This adorable Willow Tree figurine was given to us by Roy's second-momma, Sharon. The relationship Roy and Sharon have is amazing. He loves just going down to her house to hang out, and she is always there for us when we need her. She gave this figurine to Keagan as his 23rd week birthday in mommy's belly gift. The balloon the boy is holding says "Birthday Boy." It will constantly be on display, but will always have so much more meaning as we celebrate his birthday for years to come. Thank you for this gift and for so much that can't even be put into words Sharon! We love you!

 

 

This gift is from one of my co-workers, Tara. I went to class with my students one day and was surprised to see a gift bag on my desk when I returned. This adorable mug was inside. Tara and I have more in common than we knew and have found a strong connection through this journey. I am thankful for her and that I know I can always go to her for a sympathetic ear. She had written in the card that she remembered my picture with the sign that had the "Keep calm and carry on" saying on it, so when she saw this she wanted to get it for me. I gladly walk around with my mug and show my pride that I am carrying such a special baby! Thank you Tara!

 

 

We continue to receive beautiful cards with such thoughtful words in them. Thank you to these indivdiuals for taking the time to send us cards! As I have said, they will be saved and looked at many times.

 

A gift from us :) I saw this Willow Tree figurine when we were out yesterday and fell in love with it. Roy did not hesitate to purchase it as we thought the fact the baby was wearing a hat was perfect.





Once again, thank you for loving us! We hope you know how much each of you mentioned above and each of you reading mean to us. Whether we know you personally or not, whether you live near us or on the other side of the world, whether you came here on purpose and found our story by "mistake," you are part of our's and Keagan's lives and we love you for that!

Keagan's First...

Concert!

My mom, sister and I took the boys to the African Children's Concert on Friday. I know...probably not quite the kind of concert you were thinking but it was perfect for us!

All five of us went to dinner and then headed to a local church to see this group perform. What an awesome experience! The music was wonderful and the kids were adorable, but what was even more memorable was that Keagan and my nephew got to share this first together. When Aunt Jess pointed out that Carson had never been to a concert before either it really warmed my heart and I was glad to know this concert is something the boys will share forever. This may seem little, but we grasp on to seemingly little things as they bring us so much joy!

Both of the boys absolutely loved the music! Keagan started kicking as soon as they started singing and drumming, and Carson would get the biggest grin and giggle when the drumming would start and when the kids would start dancing. (We seemed to be watching Carson more than the kids on stage because he was so precious, as always!) Aunt Jess got to feel Keagan kick for the first time and Gramma got to feel him again. I love getting to feel him and love seeing the reactions of the ones who are close to me when they get to share in this moment.

This concert was definitely a very fun and memorable night for our family!

(1) Some of Keagan's biggest fans! (2) Carson "telling" Keagan it is his first too!

(1) Cousin moment :) (2) All five of us before the concert started

(1) Picture of the boys (2) Carson looking on in pure amazement!



 

The awesome choir! They sang beautifully, had such pure hearts and a strong message!

Keagan also had his first time spending time with two of my best friends this weekend! Lindsy came into town so she, Brianna, Keagan and I went out to dinner today, which Lindsy so thoughtfully paid for. She said she wanted to pay for Keagan's first meal at Olive Garden :) These girls are two of my roommates from college, two of my bridesmaids, and as I said, truly are two of my best friends. They have some of the kindest and loving hearts and genuinely care about everyone. It was so nice to catch up and also just be able to talk about Keagan with people who love us both (and Roy) so deeply! I am so thankful for them and the role they have played in my life and now in Keagan's! We love you Linds and Bri!!