Our Birth Plan

I share our birth plan to assist other families who might be in the same or a similar situation as ours in writing a birth plan of their own. Writing this was very difficult for me. To come up with direction for different situations required Roy and I to sit down and think through all of the possibilities of what might happen, from best to worst case scenario. Not only that, but we then had to think of what we wanted to happen in each of those situations. This was not an easy process and not something we could get motivated to do. In addition, because Keagan is our first baby, we were not even sure what to expect with the labor and delivery. What I ended up doing was looking through the birth plans of several other families and literally just copying and pasting what I liked. Then eventually, literally two days before we went to the hospital, I knew I couldn't wait anymore, so I sat down and made the birth plan our own. Decisions we made are not right for everyone and in fact some of the decisions we had outlined in our birth plan were not what we went through with when situations actually presented themselves. However, it was very helpful to have these hopes set-up in advance so that the hospital staff did not have to frequently ask us our desires and overwhelm us.
This is the birth plan that we established:

Our baby, Keagan David, has been diagnosed with anencephaly, in the 18^th week of his life. Knowing that our time with him may be short, it is important to us that as many of our needs and requests be met as possible. Our decisions are based on the desire for Keagan to have the longest life possible, and we request that as options are presented to us, that the staff will keep this in mind. Attached is our Perinatal Palliative Care Plan that we established with the care team, but we have additional requests that are not outlined in the plan.

We request that Roy be permitted to stay with Jenny at all times. He will remain at the hospital for the duration of our stay. He, Jenny’s mother, and our photographer through “Now I Lay Me Down to Sleep” will be present during Keagan’s delivery.

If labor is not progressing, we ask that Jenny’s water not be broken until absolutely necessary. We request that medication during labor should be in doses to provide maximum comfort for Jenny but in doses that will allow for her to remain alert. She does not desire narcotics or sedatives prior to birth.

During labor, we would like continuous fetal monitoring. We have not decided if we would like to hear Keagan’s heartbeat during labor or not, but please accept our decision. When Keagan is born, we want to be told right away if he is breathing or if he has a pulse. We would like for staff to keep our family updated during this time so they will know if Keagan was born alive. Depending on Keagan’s status, we may ask that the umbilical cord not be cut right away. We will like to be advised as to what is best in this situation and when it would be medically necessary to cut the cord. At that time, Roy would like to cut the cord. We do want suctioning, drying off, etc. but would like these procedures as well as any interventions to be done on my chest or in Roy’s arms when possible. We want the nursing staff to weigh and measure Keagan when we request it; should we forget to do so, please do it prior to us leaving the hospital.We anticipate that Keagan may be born with a large opening on the top of his head. We would like to see our baby then for his head to be dressed using first a covering of Vaseline gauze and then an outer layer of gauze and a hat that we will provide. This dressing is to be changed daily or based on saturation to prevent infection.

If Keagan is still alive, we ask that when it is time for visitors, they not be limited if possible. We want everyone to have the chance to be present when Keagan is alive if the situation allows. If he is stable, we will allow visitors to hold him. Jenny would like to attempt to breastfeed Keagan. If he is unable to suck or swallow, we would like comfort drops of breast milk to be provided. If he lives long enough to require nutrition but is unable to suck or swallow (breastmilk or formula), we would like a feeding tube inserted. If Keagan is still alive at the time of Jenny’s discharge, we would like to take him home with us and request the services of hospice through Children’s Hospital.

If Keagan is not doing well, we ask that a nurse keep us informed on his status and let us know if his time is near. We would feel best if someone compassionately walked us through those last moments of his life as we are not sure what to expect. If Keagan passes away at some point during our hospital stay, we will inform staff when we would like the funeral home contacted as we desire to keep him with us for hours after his passing.

We have brought several things with us – clothing, blankets, toys, keepsake items. We would like to dress Keagan in a few different outfits and will desire our photographer to take several pictures. We are prepared to do this as well as bathe Keagan and create our keepsake items after his passing so that we may fully enjoy the time that he is alive. Please be patient and understanding with the number of things we desire to do and make – this is our baby boy and could be the only chance we have to do these things.

We welcome the open expression of emotion from staff and family. We are grateful for the support and understanding we have received from your staff so far and would like to thank you in advance for your love and care during this difficult time for our family. We have greatly enjoyed Keagan’s life thus far and have created several memories with him. He is our first son and we love him more than we even knew possible. We have faith that our situation is in God’s hands and whatever happens is exactly what was supposed to happen. Keagan is a very special boy and we hope to make this experience as memorable and peaceful as possible and appreciate your part in this. 

Keagan's Birth Story

It has been quite some time since I have posted anything. While I have wanted to share, I also wanted to make sure I could emotionally handle the process of writing everything out. I plan to continue to post for the next few days about the days and now months following Keagan's birth, but I first want to share his birth story. (This is probably a little more detailed than some of you may be interested in reading, but I share all of the times so that other parents/families in our situation have a clear idea of what our experience was.)

Exactly two months ago, on June 3, we went to the hospital for induction. I was 39 weeks and 5 days. We had been told that the induction process could take a while for me for a few reasons - Keagan was our first child, he did not have the weight of his skull to help move the labor along, and my body had not yet started to ready itself for delivery. We chose June 3 with the idea that labor would take a few days in mind and thus with the hope that Keagan would be here by his due date of June 5. We were taken back to the delivery room at 8:15am where we decided to have a heartbeat monitor put on for Keagan and obviously a contraction monitor on me. Keagan's heart rate was steadily between 140 and 150 at this time. The silly boy didn't seem to like that monitor, as he would frequently punch back at it :) It was also interesting that the contraction monitor was registering up to 100 but I was barely feeling a thing, which gave me hope it would be an easy delivery. During this time, we went over our birth plan with the nurse. We had established some of our decisions when we met with the care team, but had also typed up some additional desires for delivery (I will share this in a later post.) 

At 10:45, a foley catheter was used to help my body start labor. This increased my contractions within less than an hour; they were recording one minute apart for a good period of time. I changed positions to get more comfortable, which caused the contractions to slow so I was given pitocin around noon. At 4:00 on Monday the foley bulb was removed. Up to this point, Keagan's heart rate remained between 140 and 150, but when I would have strong contractions, it would drop to below 100. One decision we had to make earlier in the morning was whether or not we wanted an emergency C-section if this would happen. Ultimately we decided not to do this, as we believed God would have want He wanted to happen happen and we trusted Him with that. 

At 5:30 I was given an epidural (my previous thought that it was going to be easy was not exactly accurate!) and I was feeling relief within 15 minutes. The process moved quickly after this and our doctor said we would have Keagan before the morning! At 7:30pm, the nurse broke my water and at 8:30 I began pushing. We were all amazed that instead of a few days of labor, it was less than 12 hours!

The doctor was called in and Keagan's heart rate was still in the 150's, where it had been through the whole time I was pushing. At 10:18pm on June 3, Keagan David Burton entered this world. He was instantly put onto me so that Roy could cut his cord, which was barely pulsating. When the nurse checked for Keagan's heartbeat right after birth, it was not there. She waited about a minute and checked again, but still it was not present. We are not exactly sure of when Keagan's heart stopped beating, but he definitely fought right up until, at most, a few minutes before he was born. Our precious baby boy was born into two places at once - on this Earth and into the Lord's arms. While this was heartbreaking, it was also a beautiful moment. We were in awe of our first son. We were amazed by his fight, by his beauty, and by how much our already immense amount of love grew with just seeing him for the first time! He was absolutely adorable and he was a big boy! His skull came up higher than was expected and every other part of his body was perfectly formed. He was a face presentation, which did cause bruising to his face. The bruising was not directly a result of anencephaly, but indirectly could be tied to that. Babies with this condition often are face presentation because the top of their heads are not solid enough, so instead they use their face to help push through the birth canal. Despite anything that another person may deem "different" for a baby, Keagan was so so cute and perfect in our eyes just as he was perfect in the eyes God! 

Again, even though we were hoping, praying and believing that Keagan would be born alive and live for even a short amount of time and were very upset this was not the case, we were at such peace that day as many families had told us would be the case. The hospital staff was absolutely wonderful and were willing to do whatever we wanted. They recognized it was a difficult situation and were sympathetic to that, but they also shared in our joy of having a baby and knew we wanted to cherish the time we had with Keagan. We were blessed to have my mom and Roy's sister Becky in the delivery room with us when Keagan was born as well as our amazing photographer, Jenn, from Now I Lay Me Down To Sleep.We were blessed with many, many visitors on Keagan's birthday, many of whom spent nearly the whole day at the hospital, some who didn't even get to come back and see us but came anyways and some who completely surprised us by coming and brought us such joy that they were there.  Some of my favorite memories are seeing so many people who mean so much to us see Keagan for the first time and hold him and love him with so much of their hearts.

After Keagan's birth, our families were brought back to the delivery room where Roy and Gramma gave Keagan his first bath. Keagan was then measured and weighed. He weighed 7 lbs. 4 oz. and was initially measured at 18 inches. Everyone then took turns holding our angel and getting priceless pictures with him. He wore several outfits and many more hats that are now treasured keepsakes. After getting some family pictures, several of our other visitors were also brought back. This was such an amazing time and great memory for our family. I love knowing that such a large number of people got to physically be present with us that night and got to create their own memory with baby K. (On a side note, we also know and INCREDIBLY thankful for the huge amount of people who were with us in thought and prayer!!)

With these very special people there with us, we had Keagan baptized in my arms by his Grandpa Roy. This was another amazing experience that will be forever cherished. After Keagan's baptism and more pictures, our visitors headed home. Our nurse, Gramma and Aunt Jessica worked on creating some keepsakes (hand and foot prints) while Roy, Papaw and Uncle Brian transported some of our stuff to the recovery room. After a long day we headed up to the recovery room at 1:30am. Papaw and Gramma stayed in the room with us that night and the plan was we would all take shifts holding our angel through the night. That didn't quite pan out (oops!); Gramma ended up holding Keagan all night so we all could get some rest, but I know she didn't mind that at all!

Again, Keagan's birthday was a truly amazing day. One would think we would describe the day as bittersweet. While this is true, looking back at our experience, the emphasis for us is clearly on the "sweet" side of things. We were so focused on cherishing our baby and creating more happy memories with him. We were so amazed by his presence in our arms while also knowing he was there in the room watching over us at the same time. We were just so in love with him, that all of the hurt on that day seemed minimal compared to the joy and love in our hearts!

Dear Keagan - A Letter from Mommy

Dear Keagan,

Sweet baby boy, I want you to know how much you are loved - not only by your daddy and me, but by all of our family, our church family, so many of our friends, and even by people all over the world. You are a special and amazing baby and I am so honored that I am your mom. I don’t understand why God chose me to be the mother of such a wonderful little boy, but I can tell you I am so glad he did.

Our nearly ten months together have been amazing. When I found out I was pregnant, your daddy was still sleeping but I ran upstairs and jumped on him in bed, saying “Look at this! Read this!” After letting his eyes adjust to read the word “pregnant” on the test he just grabbed me and hugged me and smiled the most heartfelt smile ever. We were so thrilled to know we were going to be parents! We then got to share the news with our family and our friends and everyone was so happy for us and excited to meet you one day. We couldn’t wait to watch my belly grow and find out if you were a boy or girl and to prepare our home for your arrival! I remember the first time I felt you kick was on New Year’s Eve. I was sitting in the car waiting for daddy and I felt you kick just one time. I wasn’t sure right away if it truly was a kick, but after talking to Gramma I knew it was. I have felt you kick and roll and stretch so many times since then, and even though I play with you and tell you to stop sometimes, it is truly the best feeling in the world. Hearing your heartbeat is equally amazing, even though sometimes you’re silly and move so much we don’t get it hear it for long. I love knowing that you are moving around in there and growing and being happy! We have had so much fun creating memories with you and sharing life with you. I hope you have enjoyed our adventures as much as our family has!

Our next memory of you is going to be a huge one – your big entrance into this world! I cannot believe that we will be meeting you in the next day or two…or three! We already know how adorable you are from all of the ultrasounds, but nothing will compare to looking at your face for the first time. You look absolutely perfect and I know you will be the cutest baby ever! The doctors have told us things could go slow, but we hope you can stay strong baby boy, so we’ll get to hold you as you breath and move and as your heart beats. No matter what happens though, I want you to know everything will be okay. I am telling myself this too. We want to share more life with you and watch you grow and become a man, but we have to trust God. He will help each of us through this; He will never fail us and neither will love and we have an abundance of that!

Regardless of what the future holds, I also want you to know how proud I am of you. You have been such a blessing to us and many other people. You have touched people’s lives and changed people’s hearts for the better. You have allowed your daddy and I to grow closer and to love each other even more. You have taught us to focus on the truly important things in life and to enjoy the little things. As parents, we are supposed to teach you lessons and mold you, but the roles have definitely been reversed in our family and you have done those things for us! Thank you for that baby!

Again, I just want to tell you that we love you so much; that is one thing I want you to be sure of! There are times when we are sad or scared or frustrated, but so much more often we have learned to just have joy in the fact that we are parents and that you are our son. When we hold you this week it will just show us even more how everything has been worth it. We wouldn’t change a thing about your life that is on our control other than, if we could, we would express our affection to you even more so you could better understand the extent of our love. There is a quote that I had heard before I became a mommy, but now it holds so much meaning  – I’ll love you forever, I’ll like you for always, As long as I’m living my baby you’ll be. No matter what, you will always be in my heart and on my mind. You will always be my baby, but also my oldest child. You will obviously always be part of our family, and please know that we will always share your story with others and with your future siblings so everyone can know how wonderful you are. And not only will you always be these things, but you will also always be hero! I can only hope that someday I can have an impact on as many people as you have and that I can create so much love in people’s hearts.

Sweet baby Keagan, I am so looking forward to wrapping you up in my arms, kissing your cheeks, holding your tiny hands, seeing your chubby little body and being the best mommy I can be to you. You are so special, so important, so remarkable and, once again, so loved!

Love always,

Mommy

Dear Keagan - A Letter from Daddy

My Sweet Baby Boy,

 

Mama wanted me to write you a letter and when she asked me the first thought I had was, "How am I suppose to do that? I have so much to tell him, to ask him, to teach him and for him to teach me that I could not possibly fit it all in one letter and I could not find the right words to use to express how much you mean to me or how much I love you and most importantly how proud I am to be your father!" I always think about you and the times we have shared together and the time and memories that I may not get to have with you. I know deep down in my heart that you will always be here with me just as Nana is and I know you will watch over your mother and I along with the rest of the family but then I can not help but think I should be the one watching over you and that breaks my heart. I hope and pray that you know that I would take your place in a heart beat if the Lord would allow me and I have prayed for that many times. People may think that I am just saying that and I know that it upsets your mother but it is something that I would do a million times over. You have so much to give to this world and to your family. You are my Superman and you are the one in my mind sent to this life to help show people love and how to love unconditionally. You may not think that you have done anything yet in your life but son you really have. You have changed so many individuals hearts and minds and that includes mine. You have taught me how to fully love again! You have taught me how to open my heart to everyone and to share each little moment as its the most special moment I will ever have. Being a father has changed my outlook on each day and for that I thank you son. You have allowed me to wake up each day with the purpose to make you proud of your old man and to look at the family and friends that I am surrounded by and to appreciate them and not take anything for granted anymore.

I want to tell you a little about your mom. She loves you very much and I know that she would trade her life for yours just like I would. Every little kick and jab you give her she appreciates and knows that is you playing with her. I wish that you would have a chance to see her and to have the chance for her to share all of her dreams and wishes with you. When we first found out that you were going to be on the way we both talked about all of the things we would do with you and all the sacrifices that we would gladly make to allow you to have the best childhood that you would ever want. I know that she was planning to do all of these fun activities for you and her to do together and she planned to have the chance to teach you just like your gramma taught her growing up. Your mother loves you very very much and there are times when I think she loves you more than she loves me and that is okay! You are the only man I am okay with her loving more than she does me! I know you will but please make sure you watch over her all the time and let her know from time to time that you are still right there with her. I know the love that I had for my mom, your Nana that you will get to be with everyday, and I know that if you are going to be anything like your dad that you will love your mom just as much! I looked forward to seeing you two do everything together and being able to come home from work and seeing you work on crafts with her or coloring pictures to give me to hang at work at my desk and I wish I could give you a chance to have those memories but just remember you will never not be in her thoughts and she will always miss and love you!

Another one of the first things that I thought about when we found out you were coming was you being able to have grandparents and to have grandfathers which was something I never was able to have. I felt sad that Nana Mary was not going to be able to be in the delivery room waiting for your arrival because she loved you even before we knew of you. She prayed for you to come so she could spoil you and the one thing that I hold onto is the fact that you are going to be doing everything with her and she will be taking care of you and spoiling you like everyone knew she would have. Your Grandpa Roy loves you so much! He always asks about you every time I go to his house and it is not often that I see Grandpa Roy cry but when we start talking about you and Nana he starts to choke up. Do not look at that as a weakness son because that is just him showing you how much love he has for you. The moment we told him what was wrong he started to pray for you day and night. He prayed that you would be safe and we all know that you will be safe with Jesus and with Nana Mary. Your other Grandparents love you just as much! They have rarely missed an ultrasound of yours! They love to see you play and move and be the little cute rotten boy that you are! Gramma Toni always thinks you are winking at her! That must be your little secret code! Every ultrasound she swears she saw you blink your eyes and no one else sees it happen! She made you the cutest little hats to wear when you are born! I hope you can feel the love that went into making them when you wear them! Papaw Steve loves to share with people about you and he always makes sure to give you a little rub when he is saying bye or good night to you. Grandma Toni and Papaw Steve have done so much for you and I just want you to know that they love you with all their hearts and they are going to miss you all the time. Watch over them and let them know that you are always there with them and you will never leave as long as they keep thinking about you.

Son I know this is hard and I know that we do not understand why this had to happen but there is a reason for everything! I have always believed that and even though that is really hard to live by in times like this because none of this seems fair but there is a reason. I know that it is not fair to you or to any of us. There are so many things you are going to miss out on doing with us but one day we will all be together again and we will do all of the things we have ever dreamed of doing. We just have to hold on to the memories that we have and the ones that we are going to make and just always remember that love never fades and memories can live on forever if we let them. I promise that I will always put you first in everything I do and that I will always try to make you proud. I know there are going to be times when I let you down and when I fail but know that I love you and I am trying my best. I feel like there is something that I should have done or not have done to be able to protect you and I am sorry that I have let you down and was not able to do so. A parent should always protect their children and this was not something that I could accomplish and again I would trade everything I have to change things and would honestly take your place. You are so perfect and innocent but I want you to know that you have done more in 9 months than most people do in their life time. You have helped so many people see things differently and have helped people in similar situations get through them easier just by being you and by sharing your heart with everyone is a super power that not many have. I am sorry for repeating myself some but I just want you to know how special you are and how much I love you. You are the most amazing thing that has ever happened in my life and I thank you for that son.

I feel like I have written a bunch of words but I have not been able to tell you how much you mean to me. I miss you so much already and you are still here laying safe in your mommy's tummy and I still miss you.

Son just never forget how much you are loved and how much you will be missed. Please watch over your Mama she will need you to help her get through this. Let her know that you are always right beside her and that you will always love her. When you look down on us and you see us having a hard day and evening crying just know that it is nothing you did wrong; during those times we are just really missing you and during the rough times is when we love you the most. You are a precious gift that has been given to us for so many reasons but there are reasons that God and Nana needed you more and needed you sooner.

I will always love you and never forget you! I am proud that you are my son and I hope that everyday you will be able to say that you are proud of me. Just remember, we are going to meet again one day and when that happens we will never be apart again there will be no sickness and no death that we have to worry about separating us again!

Always and forever,

Love Dad!

Our Last Appointment...

Today was our last appointment before Keagan's arrival and that little guy thought it would be fun to make it the only time we weren't able to get even an estimate of his heartrate - not because it wasn't there but because he was moving so much! He apparently wanted there to be something special about our last appointment so we could have something to remember it by. He still is head down (I thought he was rolling quite a bit and was worried he may have flipped back over) and still doing well.

Because this was our last appointment, I wanted to thank our doctor. I couldn't find the words to say to him to let him know how much we appreciate him but I tried (and of course Gramma and I started to cry). He truly has been amazing through our whole journey. I obviously know it isn't easy to be in our shoes, but I imagine it is also not easy to be the doctor who had to tell of us Keagan's diagnosis in the first place, who walked with us through the ups and downs, who answered our unending questions and who shared hope with us while ensuring we realized what the outcome could be. He is truly a great man and a great doctor and I am so glad and thankful that he continued to allow us to come to him for our weekly/bi-weekly appointments.

The next step in our journey is induction. As Papaw said today, "Super K is on the way!" :) We go Monday morning to begin the process, which we were told could take a few days for three main reasons: the lack of my body progressing, the fact this is our first child, and because a portion of Keagan's skull he doesn't have as much weight in help him move down.

*If you would like to stay updated on how things are progressing and know when Keagan is born, you can like "Prayers for Sweet Baby Keagan" on Facebook (be sure to like to the page, not request to join the group - the page is what gets updated). Updates from our family will be sent to our friend, Amber, who manages the page and she will post them as she receives them or as she is available to do so.

Over the past few days as we have told people the date of our induction, many have asked if we are ready and how we are feeling. These are both difficult questions to answer because this next week is going to be so bittersweet. Yes, we are ready to hold our baby boy, to look at his sweet face, see his perfect fingers and toes, and to be able to kiss those adorable cheeks and lips of his! But no, we are not ready for what may come after his birth. How can parents be prepared for their baby to pass away? We have asked all the questions, we have packed the car, we have made all kinds of memories with sweet baby Keagan, but none of this readies us for the extremely painful and difficult experience we may have. So we feel excited....excited to see Keagan and hold him in our arms, excited to share his birth with our family, excited to have our little miracle enter this world. At the same time though, we are scared....we are nervous....we are anxious. We try to turn our worries and fears to God, but to be honest, it is hard. While we can pray, we struggle with completely handing over all of our emotions. Even so, we trust in God's will and know there is a plan and a purpose in this situation. We know that He will carry us and we believe that He will provide us with the peace that we have heard so many other parents of babies with anencephaly make reference to. We also know that no matter what the outcome is, Keagan is going to be perfect. A few weeks ago, I had a dream that I delivered him and there wasn't anything wrong with him - he was perfectly formed and perfectly healthy. While we still pray this will be the reality, I realized that even with this fatal birth defect, he is still going to perfect in every way and our already huge love for him will grow a million times when we see him for the first time outside of the womb.

Memorial Day Weekend

As I'm sure is the same for many of you, we spent this past weekend with family and it was absolutely great! It was eventful for Baby Keagan, but relaxing for our family at the same time. On Saturday evening, Keagan and I went to the high school graduation ceremony. One of the girls I have coached in volleyball for the past three years, Hannah, asked me to hand her her diploma at graduation. This was a huge honor and I am so glad that I have had a positive impact on her. It was also nice that Keagan got to go to graduation - something he may have never experienced otherwise! I made it through the ceremony without going into labor obviously and without even having to go to the bathroom! Pretty amazing :) This will always be a great memory that I share with Hannah and also with Keagan.

Hannah, Keagan and I - what a special night!

I wasn't sure if I would be able to get a picture of me in the robe when we got home, so I had to find a way to get Keagan and myself in a picture together on my own :)

Emily is another one of our other volleyball seniors. So proud of all six girls who graduated on Saturday!

Post Graduation pictures of Mommy and Keagan by his tree

 

After graduation, I headed up to the lake to stay with Gramma and Papaw. Roy came the next morning as did Aunt Jessica, Uncle Travis and Carson. Hanging out with our family was exactly what we needed and it was the perfect Memorial Day for us to share with Keagan. He experienced several firsts while at the lake - first boat ride (also a first for Carson!), first slow dance with Mommy and Daddy, first fireworks, and first bonfire (at least first one we have a picture from...)

 

After Carson drove the boat, Gramma thought Keagan should too. I was going to rest my belly on the steering wheel, but this was much easier :)

Carson, such a cutie!!! <3

Mommy, Daddy and Keagan going for a golf cart ride

When we got home from the lake, we had a birthday cookout for Roy whose birthday is tomorrow. It was a perfect way to end the weekend - well, the real end to the weekend was birthday cinnamon rolls so it definitely was a perfect end! :)

Notice Keagan's butterfly! Gramma and Papaw got this for us while we were in Hilton Head. I absolutely love it!

 So many great memories were made this weekend and again we loved having this time with some of our family members, but most importantly we were glad to share it with Keagan. This weekend was probably some of Keagan's last firsts that we are guaranteed. Roy made a DVD of several of our pictures and many special songs that we have listened to throughout our pregnancy. Gramma, Papaw, Roy and I watched it Saturday morning when we got to the lake. After seeing everything on the DVD, we talked about how Keagan really has done a lot in his nine month life. He has gone a lot of places, experienced a lot of things, and as we have said before, touched a lot of lives. There is no way for us to capture the last in pictures but I think that is the most amazing part of his life. Imagining what he could do in his life if he were to live longer than expected is an incredible thing for me to think about; I just pray it becomes more than a thought, that instead it becomes a reality!

This Week's Appointments

I will probably say this in every post until Keagan is born, but I still can't believe his due date is approaching so quickly! Because of his upcoming arrival, our weekly appointments have focused on my body's progress and Keagan's positioning in addition to his heart rate. That little guy's heart is still strong as ever! At our appointment on Monday, his heart rate was 130. Hearing his heart beat is one of the most amazing sounds in the world - one that I am so thankful for every time we hear it.

Now to back track a little....before the doctor comes in, I always ask who ever is with me what questions we have and tell them any I have so they can help me remember. When I asked Roy and Gramma on Monday, we didn't have ANY....rare. :) When the doctor came in though, Gramma thought of one and I was so glad she did. She asked at what point Keagan should be turning. The doctor's response was "about now...36, 37 weeks." (On Monday, I was two days short of 38 weeks.) Based on previous ultrasounds and on being able to feel Keagan myself, I was pretty certain he hadn't turned. Our doctor felt my belly and couldn't tell his exact positioning, but was able to tell us he wasn't head-down yet. We determined he was probably sideways as I get tons of quicks and pushes on the left side of my belly and ultrasounds have almost always shown his head beside my right hip. The conversation then turned to what would have to happen if that positioning was accurate and unchanged by the time his due date was here. While hearing our doctor talk about how they would try to flip Keagan themselves was quite interesting, it didn't sound nearly as comfortable or like it would be an easy process. He also told us that sometimes the babies just won't move at which point "the other option" (a c-section) would be considered but he said we weren't going to talk about that until it was necessary. Our doctor wanted me to come back in a week so we could have an ultrasound to determine Keagan's exact positioning so that he could then pass that information on to the doctors at the hospital I am delivering at. My body has not progressed at all, likely due to Keagan's sideways position, so the doctors at the hospital would probably have to induce me and try to flip him on the same day so that he wouldn't flip back and make all the efforts go to waste. Due to scheduling with the holiday and our doctor being out, it was going to be next Thursday before we could even get in for this ultrasound so we ended up going today.

Whenever we have an ultrasound, Papaw and Gramma do their best to come to see their grandbaby and today was not any different :) All four of us, well five if you count Keagan, crowded into a little exam room with the doctor. Roy and Papaw were at their crazy antics right up until the doctor walked in, and even though I shake my head and "sh" them, I wouldn't have it any other way because it helps to relax me and keep my mind occupied while we wait. (Love you guys!) Right away, our doctor said "Well, he's not sideways anymore!" What a blessing! Sometime between Monday afternoon and this morning, Keagan had flipped to head down on his own! I never felt him flip, but have noticed he has been kicking me more, probably because he has a little more room now! Our amazing doctor who is always willing to spend as much time with us as needed, took a few minutes to explain how he could determine Keagan was head down. Once he did that, I too could clearly see that Keagan was in the perfect position! Good job baby boy!!! While he hasn't dropped, he is all set to do so. This was a big relief. As we left, I thought that little stinker just wanted us to see him on ultrasound one more time, and ya know what...I am so glad he did! We love getting to see our little guy every chance we can.

Our plan for our appointment next week was to call the hospital and set up an induction. I ended up talking to one of the residents at the hospital today and we have a tentative date for induction - again, absolutely crazy to me that we are at that point! I am going to wait until the date is definite to share it because I don't want some people to miss the update if the date changes. I will share though that we have been told on several occasions that induction could be a long process because Keagan is our first and because he does not have the weight of his skull to help move things along. We are praying that I go into spontaneous labor, which we have been told is a rare situation for moms who are carrying a baby with anencephaly. If you could pray for this as well, we would greatly appreciate. God has been answering many of our little prayers and we know He is totally able to make this happen also.

I don't have any pictures from our ultrasound today, but I do have two special pictures that have been edited by amazing women that I would like to share.

This photo from my Mother's Day photo shoot was edited by Jenn Perkins. Jenn is part of an organization called "Now I Lay Me Down To Sleep." https://www.nowilaymedowntosleep.org/ This is a wonderful group of professional photographers who volunteer to provide services to families suffering the loss of a baby. When I learned of this group, it brought me so much joy and peace; to know that we will be able to have professional photographs from the day Keagan is born is an amazing feeling. We will forever cherish the pictures that are provided! I was put into contact with Jenn through our pastor's wife, Crissy. Jenn is hopefully going to be our photographer when Keagan is born. I say hopefully because she is scheduled to be out of town around Keagan's due date. We know that NILMDTS will provide another photographer if Jenn is unavailable, but we are really hoping timing works out because I have enjoyed getting to talk with Jenn and I know she has read about Keagan and she already knows about our family, our thoughts, feelings and of course the immense amount of love we have for our special baby boy :) Thank you to Jenn and all of the other photographers for your amazing gift of your time, talent and love!

This ultrasound picture was edited by Amber Ricker. Amber is one of my friends from college who I have always loved and adored, but her support during our time of need has blown me away. Amber is the one who manages the Facebook page "Prayers for Sweet Baby Keagan." She has a lot going on herself, but she is constantly putting us ahead of her own needs. It amazes me how quickly she posts my updates onto the Facebook page :) After an ultrasound in the beginning of April, I had asked Amber what she thought it looked like Keagan was signing in this picture. Her response was love and conquers. She stayed up that night until after midnight to create this beautiful image of our precious son. She incorporated love and conquers through the saying on the side - "Love Conquers All." How true this is. We know our family can get through anything because of the love that is shared. No matter how difficult the next few weeks may be, we are confident we will eventually be okay because of our love for eachother, our love for baby Keagan and our love for God. Thank you Amber for your creating this picture and for your constant support!

Angels in Waiting

This post is going to be a difficult one for me to write and probably difficult for some of our family to read, but the words I am about to share are ones that I want to make sure are heard before Keagan is born.

Music is extremely therapeutic for me and the song "Angels in Waiting" hit me tonight as I was thinking of what to title to this post. I know this song has some truth in Keagan's life and pray it doesn't hold significance in other ways. Certainly our family and Keagan have been "treasuring time [and] leaving behind sweet memories." Roy and I have literally given Keagan life and have done our best to allow him to "live life through [us]." We pray he won't have pain though and that he will get to grow old! Aside from the meaning found in Keagan's life, I also think of our loved ones who have gone before him. Nearly all of them were taken away from pain when they were given their wings and I know they are "angels in waiting for me," but what pulls at my heart more tonight is that they are angels in waiting for baby Keagan.

Keagan's angels in waiting from our close family are my grandma Halterman and my grandma Coy, Roy's Uncle Clyde, uncle Raymond, his cousin Kimmy, his grandma Bernice, grandma Stella and of course, Keagan's Nana Mary. Each of these people were so important in our lives growing up. They helped make us into the people we are today, which has allowed us to be the parents we are to Keagan. They are missed more than you can imagine, but we believe wholeheartedly they are with us each and every day. They know exactly what we are going through and are there when we are sad, scared, and frustrated, there when we got to experience the joy of seeing Keagan on the ultrasound screen and there when he experiences his "firsts." We are so glad that they will be there with Keagan if his life on Earth is short. It brings us peace and joy knowing that he will be in heaven with so many family members who love him and who can tell him stories about his mommy and daddy as they all watch over us.

As I said, each of Keagan's angels are so special and we love them so much. Right now though, I am going to spend a little extra time talking about one of Keagan's angels - his Nana Mary. Several of you may have known Roy's mom or at least have heard stories about her, but I going to share a little about her for those of you who didn't have priviledge of knowing her. My mother-in-law Mary was one of the most kind-hearted people I have ever known. She always put others ahead of herself; even when she was sick, she would try to find ways to help anyone and everyone else. She was an amazing woman of faith and put all of her heart and all of her trust in God. Several people loved to pray with Mary because of the combination of these two things - her pure and loving heart and her unfailing faith. Mary was an amazing example of what a Godly woman should act like. Aside from that (but not really because her faith was evident in everything she did), she had a great sense of humor, was a wonderful cook and loved going to garage sales. Mary wanted nothing more than to have more grandchildren so at garage sales, she would always buy things for the grandbabies, mind you this was before we got pregnant, and would sometimes drop things off directly to our house so Roy's dad wouldn't know :) We realized after she received her diagnosis of cancer, that she may have been buying these things more often because she knew she wouldn't be around when the babies were actually here.

Mary passed away in August 2012 after a two-year battle with cancer. We believe that when she got to heaven, she must have told God it was time for us to have a baby because we conceived just about two weeks after she passed away. We were so thrilled to be pregnant, but there were times when Roy or I would get upset knowing that if we would have gotten pregnant just a month before, then we would have gotten to see Mary's face light up when we told her our news. We know everything happened in perfect timing, but to think about this still makes me sad. I also know though that Mary was celebrating in heaven when we found out! Before Mary passed away, I asked Roy if he would ask her to write a letter to our future children so when we told them about her we could also share with them words directly from her. This is the note she wrote to our babies, her future grandchildren. Although it is only a few sentences long, it is so cherished and the words are so heartfelt that they speak the words of a chapter book.

To my family and grandbabies,
I looked forward to having grandchildren. I know you'll be beautiful babies and mind your parents. You have such wonderful parents-to-be. I know they'll tell you how much Nana loved you. I got you lots of things. I may not be here but I watch down from heaven to see you.

Love, Nana

 

I am so glad that our family has Mary and so many other family members and friends looking down on us, especially as we have gone through this journey. I know they will be helping us get through the delivery process and holding us afterwards - whatever the outcome may be. And as I said before, if Keagan's does not live long on Earth, at least Nana and several of our other family members will be with him. If he is not here with us, then at least I know he will be surrounded by some of the most wonderful people from our lives when he is in Heaven . Roy told me after learning of Keagan's diagnosis that when his cousin Kimmy passed away, he listened to one song on repeat - Jesus Rocking Chair. Between "Angels in Waiting" and "Jesus Rocking Chair," we find peace and know we don't have to worry about Keagan whenever he may go to heaven. We pray that is later rather than sooner, and it will definitely be difficult but we thank God for allowing our family to be together in such an wonderful place where they will wait for us until we can all spend eternity together with no pain, no sickness, no worry, and no fear. Wherever Keagan is after birth, I am certain our little guy will be well-taken care of and of course greatly loved.

Angels in Waiting

Jesus Rocking Chair

 

In closing, I would like to share a poem that my mom gave us when Roy's mom passed away. This was a poem that was given to her when her mom passed away. I know she didn't know how this would apply to our lives in the months to follow, but it is very fitting for this post tonight and for us as we prepare for what the next few weeks may bring us.

When I Must Leave You

When I must leave you

For a little while -

Please do not grieve

And shed wild tears

And hug your sorrow to you

Through the years,

But start out bravely

With a gallant smile;

And for my sake

And in my name

Live on and do

All things the same,

Feed not your loneliness

On empty days,

But fill each waking hour

In useful ways,

Reach out your hand

In comfort and cheer

And I in turn will comfort you

And hold you near;

And never, never

Be afraid to die,

For I am waiting for you in the sky!

 

 

Baby Shower

Yesterday, Roy's work threw us the most perfect baby shower. Roy's co-workers, manager and director have been so understanding and thoughtful throughout our whole journey. As Roy said at the shower, it is amazing that he can consider work a safe haven - he can talk about Keagan and everything that is going on when he needs to, or he can just do work things when necessary to get his mind off of everything. It is so nice to know that is true for my husband - it brings me so much joy and peace knowing that work is an outlet for him rather than an added stress. God's hand was definitely in the timing of him getting this new job, and it has truly been a blessing. So thank you to all of Roy's co-workers for what you do to support him and our entire family day in and day out, and an added thank you for our beautiful shower yesterday!

Last week, Roy's manager Emily asked Roy for a date that they could do a little something for us. We decided on Wednesday at 3:00. I thought this would give me plenty of time to get from school to their work; well apparently, I was wrong. Traffic was terrible and I ended up being twenty minutes late; anyone who knows me knows I don't like to be late to places! Roy's co-workers were very understanding though, which I really appreciated. When I finally arrived, we were taken into a conference room. There was an adorable blue cake with a little lamb on it, a tree (which I thought was just something they had in the room until I actually stopped to look at it!), another gift, and most importantly several individuals who provide my husband with support every day, who pray and think of our family frequently, and whose faces were full of compassion and love. Every element of the shower was so thought out and definitely appreciated!

Some of the awesome people who came to our shower. Several people were in the hallway too and a few of the ladies on Roy's team were squatting down so they could peek in the window! :) Gramma was able to come over for the shower as well - these pictures are courtesy of her. Thanks Gramma!

The cake was so cute, and of course delicious! I thought one of Roy's team members made the cake, which a few of them didn't hesitate to take credit for, but it was actually made by the amazing Ribbon Box. (Keagan loves the icing from the Ribbon Box; it always gets him moving!) We also had a "professional" cake-cutter on our hands, who made special efforts to avoid cutting into the lamb. He works with some awesome, funny and apparently multi-talented individuals! :)

We received a very generous gift card and a beautiful figurine. I absolutely love the beauty of this piece and the picture that it paints. The precious baby boy is sleeping in angel wings. It will be a perfect reminder that if Keagan's life on Earth is short, his life in Heaven will be so peaceful, he will be surrounded by angels, and he will be spending time with the only One who can love him more than Roy and I do. 

We also received this Weeping Cherry tree. We were told multiple times how beautiful it will be when it blossoms; I can only imagine what it is going to look like and I can't wait! All of the doves on the tree, made by one of Roy's co-worker's mom, each had a note on them from different people Roy works with. His manager Emily told us that Keagan's story has touched so many people, so each person wrote a little note letting us know how he has touched them or wrote a quote or bible verse for encouragement. These were so special! They have been read many times over already and have been put in Keagan's memory box along with other notes like them. I love reading these type of things, because they are a great demonstration of how special Keagan is and how much he is making a difference in this world. It also makes me believe that people outside of our family will continue to remember him even after his earthly life ends. 

 And in case anyone was wondering, the tree is already planted! We put it right in front of our house so the beauty could be shared with all of those who pass our house and so that we could see it every time we look outside. I say "we put it..." because I provided some awesome supervision and direction! So much so that Roy eventually sent me to get dinner while he finished :) Really though, Roy worked from the minute he got home to rearrange the flower bed and put the tree in the perfect spot. I am very grateful for his hard work!

Thank you again to the Scott's company, specifically the OTC department. We appreciate your actions, words and prayers so much! I also want to directly thank Emily and Kim for putting this shower together and for allowing everyone to get together for it. I know its not easy in your department. This was the perfect day for us and more than we could have ever asked for or imagined.

Fluid Check #5

Today was another bittersweet day - we had our last ultrasound this morning. This of course means we'll get to hold our baby boy in our arms soon, but it was also the last time that we were guaranteed that we would see him alive and active. This is an extremely hard thought to process and made for an emotional day. We are so thankful for all of our ultrasounds and the more-than-usual amount of times that we have gotten to see baby Keagan, but all of that doesn't replace our desire to hold our son in our arms while he is alive, even if just for a minute. We ask that you continue to pray for Keagan's healing, but if he is not healed, that you pray for the length of his life.
Here are some of the medical details from today's fluid check. Keagan is measuring big still; he is actually in something like the 80th percentile. I am 36 weeks 6 days, but his stomach is measuring 37 weeks 4 days I believe, and his legs are measuring 38 weeks 3 days! Beth, our wonderful ultrasound tech, also let us know that he is estimated to be weighing 7 pounds 4 ounces! Dr. Niemi said this number can be a pound off in either direction so we should be expecting a 7-8.5 pound baby if we go to full-term. I love it! :) What I don't love is that Roy and I bet what he would weigh after seeing his measurments. I had 6lbs.8oz. up to 7lbs.1oz. and Roy had 7lbs.2oz. and above. Well as you can see, Roy was right and now I have to go see Star Trek this weekend - anyone want to give me an excuse not to go!? :) Okay back to the appointment - my fluid is measuring 23 cm this week, which is a little high but not too concerning since we are so close to the end of our pregnancy. Everything else is looking good! Keagan's heartrate was 125 this morning and then 130 at our appointment this afternoon. (It was 132 at our heartbeat check last week; I never had a chance to post about that appointment.)
We met another doctor in the high risk group today, so now we have met all of them. My understanding is they aren't really involved in our delivery, but at least we've met them all just in case. Our doctor today though was great and helped make our last appointment enjoyable. And of course, Beth was there again. She has been so great throughout our pregnancy and we are very appreciative of the fact that we got to have her as our technician every time and that she was so kind, understanding and easy-going. It was a little funny today because Papaw had to go to the doctor for himself this morning so he wasn't able to come to the ultrasound. When Beth came out to get Roy, Gramma and I, one of the first things she said was "You're missing one of your crew members!" We went back to the room only to see that she had the three chairs set-up next to my chair, knowing that usually all four of us are there. These little things meant so much. Beth has definitely been a blessing in our journey, so Beth if you make it to this site, thank you again!
Okay....cute stuff now :) Keagan had his hands up by his face the whole time and was right up against me like usual. We got to see him stretching, taking a drink (we think), sucking his thumb (again, we think...but that's the first time we've seen that so we're definitely going with it!), and of course just being as adorable as ever. Here are the last pictures of Keagan while in the womb. Also, Beth worked extra hard to pull the videos off from last month, so we now have those too!! Very grateful for that!

 

Beth pointed out that he really looks like a newborn baby here! We totally agree - he looks so perfect and peaceful. His eyes also look much better than they did, even compared to a month ago. They don't really look like they are "bulging" anymore. We obviously love him the same regardless, but thought this was another small blessing in today's appointment.

 

Not cooperating very much - rotten little boy! :)

Roy really wanted a picture of Keagan's little butt. Strange request, but oh well!

Sorry baby boy, it's too cute not to share with the world.

 

I'm not sure if these videos are going to work on here, but I thought I would try so you all could see him moving around in there as well. This movement is all him!

In this video, I love that you can see Keagan opening his mouth and, as Gramma pointed out, it looks like he is swallowing.

 

 

My First Mother's Day

Today was a bittersweet day - I loved getting to celebrate my first Mother's Day, but it also brought pain to know this could be the only Mother's Day I get to spend with Keagan here on Earth. Just as we do with each day though, I did everything I could to make it an enjoyable and memorable day. Roy was coaching all weekend, so I spent all weekend with my mom and dad. While Keagan and I definitely missed Daddy, it was nice to have this time with my parents.

Because Roy was going to be gone all weekend, he had Keagan give me a gift on Friday. I cannot adequately describe the card without quoting it directly, so I have put a picture of it below. Keagan's (with daddy's help) words were so touching and meant the world to me. I also received this amazing "Mommy & Me" picture frame. I cannot wait to find the perfect picture to put in it. I feel like I'm going to have a hard time deciding where to put the frame in our house because I'm going to want it everywhere, so I may end up moving it around to different rooms with me :) I definitely want to thank Roy for this perfect gift and for starting off my weekend in such a great way. He told me I also need to thank my family though. My mom had seen this frame a little while back and when Roy said he would like to get it for me, she went back to get it only to find that it was no longer at the store. This began the "ultimate state of Ohio picture frame search" according to Roy. Gramma, Papaw, Uncle Brian and Allie looked in every Hallmark possible. Papaw told me he pulled up Hallmark on his GPS, and just started calling every one that came up to ask if they had the frame. Supposedly there were "Mom & Me" frames but that wasn't good enough :) Papaw was the one who ended up locating the perfect frame about an hour and half from home, but after many more hours of driving around. So thank you to my family for your efforts; they defintely didn't go unnoticed!

Today, mom and dad gave me two cards, of course, and a gift certificate for a pedicure. I have never had a pedicure before and don't really like people touching my feet, but I think it is going to be really relaxing (once I get over the initial "shock"). Mom thinks its going to be funny to watch, so one of these days I'm sure you'll see pictures on here! The cards were perfect, but as I've said before, we don't expect any less from mom. :) What touched me more though was the handwritten note. It amazes me how my parents can support us so much through this and be so understanding and loving all while experiencing pain in the situation themselves. Thank you so much to both of you for helping to make this a great first Mother's Day for me, but also for what you do day-in and day-out. 

Keagan, Gramma, Papaw and I went to church this morning where all of the mom's were showered with love, but I received an extra special gift. I can't recall if I have talked about this here, but after a few of the women in the church learned about our situation, they started a prayer group. We meet each Sunday before church and pray for several needs, never failing to pray for our family and of course for Keagan's healing. To my surprise this morning, one of the amazing women, Raven, shared a beautiful message that meant so much to me and she finished by letting me know that all of the women had made something for me. I then received this beautiful flower pot that was filled with flowers that attract butterflies and decorated with a quote and the precious feet of Raven's baby boy. The women put a lot of thought of what quote or line to put on the flower pot, and then decided on this one that my mom had found: "A child is a butterfly in the wind." When we got home, mom shared the poem with me that this line came from. How perfect and true these words are. "A child is a butterfly in the wind, some can fly higher than others; but each one flies the best it can. Why compare one against the other. Each one is different! Each one is special! Each one is beautiful!" Thank you so much to the women in our prayer group for this gift, and an even bigger thank you to each of you and the rest of the church for the unfailing support that you have provided us while we are on this journey. You so openly accepted us and loved on us without question when we needed (need, really...not necessarily past tense) it most.

 

 

I also received this gift from our church along with all of the other mothers - a notepad and flower pen. I love that the notepad has a butterfly on it. How fitting!  

 

And this cute mini-rose plant was given to me by Roy's dad and his church. So many plants that are absolutely beautiful that I am going to do my best to keep alive (not my strong suit)!!!

I really wanted to create a special memory with Keagan today to help me remember my first Mother's Day with our baby boy, so mom and I went to have a Mother's Day Photo Shoot! One day at school I was talking about taking pictures in a dandelion field because of Keagan's nursery and the significance we have found in them. This week Rainie told me the field behind her house had tons of dandelion seeds and that we were welcome to out and take pictures there. I was considering asking one of our friends or family members who are photographers to take these pictures for me, but Rainie thought we should try to get out there sooner rather than later so the farmer didn't mow the field and I did not want to bother any of them on Mother's Day. So, mom was my professional photographer for the day, and we ended up with some awesome pictures. Talk about a multi-talented mom :) Thank you Rainie for thinking of us and for letting us come out to your property! Thank you mom for putting me ahead of yourself again and doing this special something for me when it was your day too!

 

As I said above, this was obviously a day for my mom as well. I can say that my mom is the most amazing woman in my life. She is so loving, generous, thoughtful and caring. I am a lucky girl to have her as my mom and to have her as a role model, showing me what it means to love your child unconditionally. Because of the love she has shown me throughout life, I know how to love Keagan with my whole heart. My mom and I have always loved spending time together, and I am so glad that we have been able to build special memories together with Keagan. I don't know that Keagan realizes how lucky he is to have his Gramma, or his Nana in heaven for that matter, but I know they both love him more than he would ever be able to understand and because of that he is the luckiest boy on Earth. I have the best Mom, and he has the best Gramma, and we love both love you so much Mom!

Keagan gave his Gramma a few plants for Mother's Day. They are called "Blue Fortune" Agastache. We gave Gramma this "card" below explaining why we picked these plants.

 

Happy Mother's Day to my mom, my sister, all the other mommies out there and to me from my precious baby boy! Thank you to everyone who helped make my first Mother's Day so special. I pray that whatever a year from now brings that I can look back to today and be reminded of the joy I had in spending the day with my happy, active little boy. I know that no matter what, Keagan will be with me next year and celebrating one way or another. I love being a mommy, especially to this special little boy. I will forever enjoy the fact that I have the honor of being a mother; of protecting, carrying and caring for our son, Keagan David, even if only for nine months but loving him forever.