Today is a day filled with many emotions. I can't help but think about not only Jonah but our future as parents.
This day has been a long one waiting. Jonah's autopsy was finished back in August. One of Jonah's doctors called me right about my 6 week follow up appointment and said my doctors and Jonah's doctors would meet to review it and then contact me a time after where we could meet with them. Today was that day to meet.
Jonah's autopsy showed that he passed away from a perforation in his large intestines. This is something we already knew but weren't quite sure on why it happened. They said this was most likely caused from a bacteria he had. This was not a bacteria he got while in utero or was caused by the hydrops. This is a common bacteria that babies can have and that most people carry without even knowing it. It's a common thing that can happen to premie babies. Part of me feels broken to know that Jonah fought so hard and had overcome the hydrops only to be taken away by something completely different.
We also found out that Jonah was a carrier for Cystic Fibrosis. They said he wouldn't of had it but is only a carrier for one of the strands. Which means Joel or myself are also a carrier and possibly Liam as well. This is something we will need to do some further testing on. They did say that this had nothing to do with what Jonah had or the cause of the hole in his intestines.
My doctors have always said, from the beginning, that Jonah's hydrops were caused from my antibodies fighting against his antibodies. They always seemed like it didn't make sense and there was something they were missing. Both of us were hoping the autospy would shed some light on this.
Back in August when I went for my 6 week appointment I was told that we have a very high risk of all of this happening again if we were to get pregnant again. There was nothing to stop it from happening and it may even be worse because my body is now really ready to fight back. See my doctors have always said the cause of Jonah's hydrops was because he was very anemic. A baby can become very anemic for multiple reasons. They did much research and the only thing they came up with was that my antibodies were fighting against his antibodies. So my doctor told me the only thing they could do if I get pregnant again was to monitor me very closely and the minute they see signs of the baby being anemic they would start blood transfusions. Of course I don't even know how to begin to explain how I felt when I heard this news. I completely fell apart. How could I bring another child into this world knowing there was an extremely high chance they could go through what Jonah went through. I could care less if I had to go through any of the procedures again. But what I can't bare is losing another baby. Or having another baby suffer the way Jonah did. It's not fair to any baby to have to endure what he did.
After the autopsy it doesn't seem like many questions were answered on future pregnancies. The answers were pretty much the same thing. Things still didn't seem to add up to the antibodies causing the hydrops but nothing else seemed to make sense. The only thing difference is that I actually know what it is called that I have, anti-JKa Antibodies. The doctors we talked to tonight were Jonah's doctors so they could only give me little information about this. So they recommended that we see a genetic counselor and one of my former high risk doctors.
All that's left to do is to trust in my Lord and Savior.
God, I ask you to give us faith and trust in your plans for us. To not fall into temptation when things are tough or scary. That we hold onto you with all our heart and know you will guide us for our future. God we praise you for blessing us with a sweet boy we only knew for a short time but that has made an impact on our lives forever. God we ask for strength during this time. In Jesus name.
Be still, and know that I am God. (Psalm 46:10a)
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. (Proverbs 3:5-6)
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (Isaiah 41:10)
Be strong and bold; have no fear or dread of them, because it is the Lord your God who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:6,8)
The last picture I took of him while he was still here on Earth.
July 3, 2014
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