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!
I know you posted this almost a month ago, but I wanted to say how adorable Keagan is! Bethany Conkel is my sister-in-law (she is married to my older brother) and I remember how much fun the 3D ultrasound was. We were so grateful that the technician let 15 people in to watch, and all of my family and Bethany's were able to see him. It was such a blessing to watch Amalya moving (and he moved a LOT!) and full of life! We were all so blessed to by it! He even stuck his tongue out at us all. :) I love seeing your pictures and thank the Lord you guys were able to experience this! God blessed our whole family through Amalya, and while it was hard, God's hand was evident throughout the whole thing! One of the biggest encouragements was watching my brother, Eric, love Bethany through the all of it. I pray that you both are encouraged and strengthened by the Lord during this time. There are hardships ahead, but there are so many blessing as well! Love and prayer to you and Roy!
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