First I want to take the time to say thank you. My Internet time is very limited (and even on my phone my thumbs can only do so much) so I have not had a chance to thank you all individually for your encouragement, prayers and love! Hopefully I will have time to do that today. Your support has been huge for David and me. It has given us strength and hope.
Now for some news, news, news…we found out the results of the amniocentesis last week. Gideon does not have a chromosome disorder. This is not necessarily as surprise as the doctors were not very suspicious of this. Overall this is good news because children with chromosome disorders tend to have more severe health problems. They are looking into my insurance to run another test that looks at even smaller bits of genes. This test looks to see if there are deletions or duplicates of genes to small for the regular test to show.
Because my OB didn’t have the test results she couldn’t know the reasons they are very suspicious what is going on here is a genetic things. Later on Friday Bryanna explained that because his lack of development is “asymmetrical” meaning just his head is small and because of the facial deformities it seems unlikely that a viral issues caused his microcephaly. This news makes the future of our family uncertain but I’m putting that on the back burner for now. Or, at least I am trying to…
Gideon had a fetal MRI on Wednesday. He didn’t seem to mind. For me, not so much fun. More on that later. The MRI had some “artifacts” which means things on the film that are not baby so they want to do another one in about a month. Bryanna, our genetics counselor gave me a call yesterday to let me know the tentative findings of the MRI. The MRI confirmed the microcephaly. (No big surprises there). It identified that; at this point the ventricles (space the brain) appear to be normal. Good thing. (I am always asking Bryanna that, “so is that good/bad thing or what?” They also suspect a Chiari malformation. This means that the back of his head isn’t formed right and parts of his brain are getting squished. (That’s a technical term: squished). This, as far as we know is not good or bad news. Chiari malformations are common in children with spinal bifida and other spinal problems (which he does not appear to have) and is often asymptomatic. That means is that they usually find it while looking for something else. It can cause dizziness, nausea or balance issues that can be helped with surgery.
Micrognathia. There is a fancy pantsy medical name for small chin. The MRI did not show evidence of this disorder. This is good new, if it is correct. At this point I am too emotionally vulnerable to take anything too good and run with it but I am going to pray the MRI is telling us the truth. If this is the case Gideon is less likely to have trouble breathing and eating and should be able to breast-feed normally! Also Bryanna told me that they will not do a cesarean unless absolutely necessary teaching me to be careful what you assume and then get freaked out about…she said they really try to avoid them, especially for first pregnancies.
I will go and see the doctor at university hospital sometime the week of February 8th. I will probably schedule that appointment sometime next week. At that time she will do another ultrasound to check in. I will also have to have another MRI. While Gideon has the MRI. Hopefully this one will not be so long. I was in there four an hour, and then had a fifteen-minute break then another hour. I reminded Gideon several times during the process how much his mother loved him. I did well with the small space but for some reason it really hurt my back. I did well until the end of the test when David gently had to remind me that they Doctors were not, as I was beginning to suspect, NEVER going to let me out.
With all that news it is probably easy to see why this week was a bit of an emotional roller coaster. OK so a lot of a roller coaster. I have had many moments of hope and strength. Though I would like to the credit for this faith, I know I can’t. In my own strength I am a wreck. I am full of doubt, anxiety, and fear and I curse the darkness. This has to be God because it is not me. My pride often temps me to say, “Oh, look how good I am doing” but then the Spirit gently reminds me that it is only in His strength I am made strong!
I struggle to know what to do with my grief, and even what I am allowed to grieve for. There are times when I am overwhelmed by grief. Out of control, runaway train, get punched in the face grief. I think of all of the things I have lost and it becomes too easy to focus on what I might not have… holding him those first moments, breastfeeding, sending him off to college. But how can I even know what Gideon’s life will be? Is any parent really guaranteed all of those “normal” things? Our lives and the lives of our children are so very fragile. I am learning early on to be thankful for the moments because God’s promise wasn’t that tragedies and road bumps are not to come. His promise is that He will be with us and give us what we need in all of life’s uncertainties.
At the same time, I know that I must allow my self to grieve, but for what?
So much is going on in my head and in my heart. It flies by so fast that sometimes I think I should keep my journal with me so I can remember it all. He teaches me new lessons everyday. Its quite the crash course in faith and trust. For now though, there is a squirrel outside the door I am going to let Angus pretend he can catch.
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