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!