This is beautiful and made me cry. They asked for a day with their sweet baby boy with anencephaly and were given seven days. I’ll never stop asking for more time with Brielle. God is good and kind.
This is one of the best versions of Jaxon’s story I’ve read. I’m so happy he’s beating the odds, he’s such a sweet boy!
These two verses have, for a lack of a better word, haunted me.
“”If you can?” said Jesus. “Everything is possible for him who believes.” Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!” (Mark 9: 23-24).
I have repeatedly asked God, “Please help me, help my unbelief. Please save my daughter.” And I have struggled with this. I know full well that what is bestfor my daughter may not be what I want. I can’t see the whole picture, I only see moments now. I cannot fathom what will happen if she lives or dies, and the consequences associated with each outcome. I also know that if I do not ask, if I do not believe, how can I expect Him to save her?
So I struggle. I think of Abraham and how he knowingly took his only son to be sacrificed, having full faith in the Lord that He would do what was best for Isaac and himself. Abraham’s faith was strong, deep, and admirable. Because of his faith, God provided a ram and Isaac was spared. It was a test of Abraham’s faith and God promised, “…because you have done this and have not withheld your son, your only son, I will surely bless you and make your descendants as numerous as the stars in the sky and as the sand on the seashore. Your descendants will take possession of the cities of their enemies, and through your offspring all nations on earth will be blessed, because you have obeyed me.” (Genesis 22:16-18). And God did bless Abraham. The Jewish nation emerged from Abraham’s descendants and became a great and powerful nation. Jesus came from the Jewish people and went on to bless all nations and all peoples.
I want to have faith like Abraham, granted he also had eighty years on me that he had spent with God. I still want to have faith like that, but I don’t know how. So I beg God to help my unbelief. I want to go up to that altar and trust that God will provide. But I am afraid. I am afraid that the provision will cause me great heartbreak and great pain. If Brielle lives, will her life be one of suffering and pain? Will taking her home to be with Him, be merciful and loving?
Samuel was a strong Godly prophet and was of great use for the Lord. I spend time thinking of Samuel, because of his mother, Hannah. Hannah was barren and she was in deep anguish and grief because she could not have children. So she made a vow to the Lord, “O Lord Almighty, if you will only look upon your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the Lord for all the days of his life…” (1 Samuel 1:11). She had a son shortly after her vow and she kept her vow. After her son was weaned, she gave her son to the House of the Lord. He went on to be one of the greatest prophets of the Bible and his whole life he remained faithful to the Lord.
So I offer my daughter, I beg Him to make her a Samuel, to use her for His purposes and to let her life glorify Him. I ask this knowing full well that her purpose may resolve shortly after her birth. And I struggle. I don’t have answers and I don’t know what the plan is. I am afraid. I don’t know how to trust and how to fully believe that He will save her. I want to know how. I want to know that peace, I want to have that level of faith. I pray that God is merciful with me, that He understands my heart and that He chooses to save her, despite my unbelief. He amazes me and I want to know and understand that amazement through faith, through belief. I want to fully believe in complete healing for Brielle and trust that it will happen.
I have to brag on my Mom. She came out last Wednesday and helped so much. She stayed Wednesday night with me so David could go home and get a good night’s rest. When we came back from the hospital she and Dad went out and bought groceries for the weekend. She made beef stew for dinner (and cookies!). We finished watching Princess and the Frog with Brielle, we had started watching it Wednesday night with Mom, Dad, and David. And then we watched Aladdin. Brielle didn’t go for Princess and the Frog, but she loved Aladdin. I guess Jazz isn’t her thing.
Friday, Mom began cleaning the house for us. I’ve been too tired and David has had way too much on his plate and hasn’t had time to clean. He already has his hands full. So she took care of us all weekend. She did laundry, dusted, vacuumed, cleaned bathrooms, deep cleaned the kitchen. It was so nice. It was uncomfortable at first, because it just doesn’t feel right to have your Mom clean your house. But David and I appreciated it so much.
I’d been craving pulled pork sandwiches, so Friday she made pulled pork sandwiches, fried potatoes, and green beans. We ate good this weekend! Friday was also Brielle’s 34th week day, so Friday night we had popcorn and watched Flywheel (the first Kendrick’s brothers film). Brielle danced through the whole thing.
Saturday we had a popcorn lunch and saw War Room, another Kendrick’s brothers film in theaters. We loved it, so did Brielle! She did lots of wiggles during the movie. It really was a very moving movie. We had a great weekend with Mom, and Dad when he was here. Dad went back Friday morning, he left at like 5 AM.
David and I are so thankful for everything Mom did to help us out. We really needed the help and appreciate it so much. Especially David, he has way too much going on. He’s being pulled in just about every direction and when I told him Mom wanted to help him by taking care of the house, he let out a huge sigh of relief and it was as if a weight was lifted off his shoulders.
This is an update on what happened at the hospital.
Wednesday morning I woke up and felt pretty good, I had a few bites of breakfast and within a few minutes my chest tightened and my pulse skyrocketed. It jumped all the way up to 250 and would not come down. And my blood pressure was low. After three days of this, my heart felt like it was about to give out. And after three days of being in the hospital the cardiology department was no closer to figuring out what was wrong. I wasn’t feeling too optimistic. The cardiology department had recommended beta blockers, but they are category c and there isn’t much known on its effects on fetal development, that combined with anencephaly and I felt very uneasy about taking them. So I refused. I refuse about all medication unless absolutely necessary because there aren’t studies on how medications affect anencephalic babies. I know I was frustrating the doctors, but I was not going to do anything that might shorten time with Brielle. All medication comes with a price (just look at the side effects for each pill you take), the price was too steep for me. I also didn’t feel like it was appropriate to take medication when we had no idea what was wrong. And when my bp was already so low, it didn’t seem smart to take beta blockers, which would just make my bp even lower. I told them to find another solution.
David and I talked about it for a bit and agreed we should have my parents at least come out. There weren’t any signs that progress was being made or that the doctors were going to figure out what was wrong and my heart didn’t feel like it had much left in it. The pain just kept getting worse. We decided better safe than sorry and that if I did have a heart attack or stroke, that my parents should get a chance to see me before that happens. My parents found the earliest flights out and got there as fast as they could. David was a bit of a wreck. He kept saying, “I can’t lose both of you.”
Within a few hours my heart rate began to decline. When my Dad arrived it was still high, but under 140 (or about around that range). My chest was still in quite a bit of pain and it was difficult to breathe or talk. I talked to a very nice cardiologist and he seemed extremely confused by my situation, every single test came back healthy and normal.
As the day progressed into the evening my pulse came down below the 120’s (most of the time) and we started to notice that it would spike after I’d eat (and after stressful conversations or I’d get upset). I’d already been thinking maybe there was a vagal nerve problem. This nerve is the nerve that is damaged in my stomach and causes me my health problems. The vagus nerve originates in the brain stem and spreads throughout the entire body, including the heart. We eventually came to the conclusion that either my stomach organ (due to gastroparesis and polyhydramnios) was pushing against my heart and causing my heart to work harder, or that the vagal nerve in my heart was misfiring due to issues elsewhere in my body, such as my stomach. Either way, I needed to treat my gastroparesis instead of my heart. So I did and my pulse came down and went back to normal. I took a tylenol and my pain lightened and the stress on my body was alleviated.
By Thursday morning my pulse was within a very healthy range, my blood pressure was back to normal and I was feeling like myself again. I was talking and I had color in my face again. Dr. Bootstaylor knew I wanted to go to the pumpkin patch this weekend, so he was eager to help get me out of the hospital. He agreed that if I didn’t have a spike after breakfast or lunch then I could go home. So at around 4:00 PM on Thursday I was discharged.
I’ve felt great since. I still have moments where it will spike, but it’s generally because I did too much or have too much food in my stomach. Nothing as bad as when I was in the hospital. This really was an answered prayer. I had such a quick and sudden turn around and really there was no original cause or explanation. Thank you to everyone who was praying for me and Brielle.
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