Last week we had our 16 week ultrasound (May 16, 2016). I can not count the number of times I have prayed and begged God to allow us to see positive changes. I know the amazing things our God is capable of, complete healing if it is His will, but right now we are just hopeful for small improvements. We don’t believe that our little love is suffering but we do know that she is a fighter. She is our “little warrior” and she and I will put up as great a fight as we can for as long as the Lord allows us to.
There is not a day that goes by that I don’t pray that it is God’s will for her to be here with me and her family and the many people that already love her. I also have to remind myself that she will be exactly where she needs and is supposed to be, whether it is here in my arms or forever in the arms of our savior. I pray that our sweet girl knows that she is a huge blessing to me and that I love her just as much as I love her sisters. I hope she can feel the love that her sisters have for her as well. Every single day our sweet hearted Jovi prays for her “tiny baby sister.” She asks God for anything from healing, to being able to meet her, and for the day she is due to be here to come quickly. In these moments in the past I use to feel so broken and my heart would be so heavy because I can see the love and compassion she has for a sister that she hasn’t even met and may not ever get to truly meet. I have decided that I need to enjoy these moments, I need to enjoy Jovi’s heart and the ability the Lord has granted her to love her “tiny baby sister.” Jovi is being a great example for Jaspyn in these moments, Jaspyn will sometimes bow her head and repeat Jovi’s prayers. It is very important to me that we teach our girls about prayer, who we are speaking to, and the power praying to our God has.
I think the hardest thing for me right now is knowing that I may never have direct answers for my pleas and prayers. Last weeks visit has not proven that the Lord is not answering our prayers, it can mean not right now, or they just may not be answered in the way that we hope. We were informed that our sweet girl’s fluid levels have risen and the two cystic hygromas on her head have increased as well. The one on the right side of her head is much larger than the one on her left, but this does not mean anything aside from there is just more fluid on one side than the other. Her entire little body is swollen and that was incredibly evident from the ultrasound. It is so difficult to see her like that, but I was so grateful to see her kicking her little legs and see her heart beating. This was the first time that her heart rate was “normal”, which was a relief. She also has a skin edema on her neck under her chin and that may have been the hardest thing for me to see because it sticks out past her little chest and chin, broke my heart.
Last weeks could have been much more difficult had our Doctor encouraged us to do what so many other doctors encourage their patients to do in times such as these. But praise God we have been put in this doctor’s path because she encouraged just the opposite. She knew that termination was not an option for us and it was evident that our decision truly touched her and she let us know that we are the reason she does what she does. She was so relieved to know that we were trusting the Lord with our baby girl’s life. She told us that she was proud of us and we have made a difficult but powerful decision in continuing our pregnancy. It was such a relief to know that we have support in a world where it seems to be discouraged. At the end of our appointment she graciously asked us if she could pray for us, and her prayer was the biggest blessing I had received in this difficult time. She has a very difficult job and to see her choosing to glorify the Lord in so many tough situations was like a breath of fresh air. She has truly blessed me and my pregnancy and I plan to let her know at our next appointment with her at 20 weeks.
At this appointment we also learned that our little warriors (based off of her Femur and Humerus length) is measuring just under two weeks smaller than how far along I am in my pregnancy. If she continues at her current rate of growth she will be in the 31st percentile by her due date. This is nothing to be concerned about as Turner’s babies are normally small.
The day after our ultrasound (May 17, 2016) we had our 16 week check-up with my OBGYN. We were able to hear her heartbeat and praise God it was still normal. I know it was only a day difference but when you are taking it one day at a time this is very important. A normal heartbeat means that her heart is not having to be overworked due to the large amount of fluid that surrounds her tiny body.
At our appointment we also discussed the possibility of early delivery. If at as early as 36 weeks our little is declared “failure to thrive” while I am still carrying her we can be induced in an effort to give her a chance at life outside of the womb. We are preparing ourselves to the best of our ability with what our future may hold.
There are a lot of fears that come with every aspect of this life I am carrying and this pregnancy but like I said we are trying out hardest to take it one day at a time.
AND, we have all (Kyle, Jovi, Jaspyn, and myself) finally agreed on a name…
Jaxlee Adele Souza
My husband’s parents have set up a GoFundMe for us, which has been a blessing in offsetting some of our additional medical costs.