Holy cow…it was a long one…a really long one!
I’ll start with the neurologist. OOOHHH…how I wish I didn’t have to add another “ologist” to our medical repertoire. In this case the neurologist is not for me (although at this point it could be right around the corner) and it is not for Brandon (debatable if you really know him) the nightmare is that it is for our baby girl. Rewind to last week. Ellie woke up from a late nap and Brandon pointed out that she seemed a little “wobbly” I chalked it up to being groggy from her nap. We noticed her losing her balance a few more times, but honestly we didn’t really think anything about it. On Saturday, she really seemed to be off balance. Brandon and I were both worried…really, really worried. Fear rushed over me because to be completely honest we are no strangers to the “worst case, 1%’er category.”
Insert side note here: I am not at all trying to sound negative. But, you have to understand where we are coming from. For the last 5 years we have been battling with the odds in the medical community. This doesn’t have anything to do with a lack of faith (although it is definitely a test of faith). It doesn’t have anything to do with pessimism. It doesn’t have anything paranoia. It’s just the truth…it is fact…it is exhausting at this point…
So, this morning I noticed Ellie stumbling again…badly. I doubted myself at first. I called Brandon and we decided that it was time to call the doctor. I explained the issue and he asked me to tape her episodes. He wants a visual and he also wants to refer her to a neurologist. WHAT…I thought maybe we would talk about an ear infection…something “meaningless” not a neurologist. My fear about the worst case scenarios played in my mind. I mean is this really happening? At what point is enough just enough? I debated about writing about this. Is it weighing heavily on my mind? Yes. Am I scared to death? Yes. Do I pray every single minute of the day that it is nothing? Yes. Do I feel like I have to prepare myself? Yes. So, tomorrow I will tape her. Then I will bring it to him and hold my breath…and pray. One of the reasons I decided to put our situation on the blog is because I know you will pray for our baby and our strength and quite simply a "break" from God. I will keep you all updated as we learn new information.
Narcolepsy. Oh, Brandon…he just can’t help himself! I looked up the definition of narcolepsy and this is what I found: A condition in which a person experiences extreme tiredness and possibly falls asleep during the day at inappropriate times. I’m kidding of course. Brandon doesn’t have narcolepsy, but it is pretty entertaining to watch him try to stay awake…especially in a doctor’s office when WE are supposed to be talking with the genetic counselor.
No, Brandon didn’t fall asleep…but, I know he really wanted to! It was a marathon 1 ½ hour meeting about genes, mutations, PGD, IVF, deleations, etc. Thank goodness I spent countless hours researching b/c I met my match today in that office. I don’t feel like I was unprepared, but truthfully we didn’t learn anything we didn’t already know. She didn’t have Bennett’s DNA results from Women’s so after a long talk we wrote up a plan.
1. Switch fertility doctors
2. Evaluate Bennett’s and B’s DNA results
3. Letters to insurance company about covering PGD and/or IVF
4. Contact the genetic centers that will prepare us for the PGD (preimplantation genetic diagnosis)
5. Reharvest (if necessary) and perform PGD
We are looking at about 4-5 months realistically; however I pretty much told her today I am shooting for 3 months. I am not getting ANY younger here people!
I had a lab slip that was sent over from my OBGYN to have a blood clotting study performed. The subchorionic hematoma I had during my pregnancy isn’t normal (clearly) and she wanted to make sure it was due to a clotting issue. If it was they have a medicine regimen they would implement if another pregnancy were to be achieved. So, reluctantly I went down to the lab to have “a little” blood drawn for this simple test. Turns out, it’s not a simple little test! Three veins and 21 vials of blood later the phlebotomist was done and I was nauseous! The big joke of the afternoon was that my veins wouldn’t cooperate. She would get a few vials and then the vein would shut down (story of the rest of my body!). So after 2 veins failed I was ready to call it quits. She gave me a minute to calm down and I decided that coming back for 4 more vials was NOT an option for me! I mustered up the courage and told her, “You know, between these two freckles there is a good vein!” How embarrassing! We all got a good laugh…and the good news is that I was right! Why can’t the rest of my medical solutions be as simple as that?
Oh, mercy! Sometimes, I don’t even believe all of this nonsense. I know it could always be worse and I am grateful for the beautiful blessings I have been given (more grateful than I could ever explain). Sometimes, I feel like if I would just give up on trying to have another baby we would eliminate a lot of the pressure and heartache. The problem is…I have never been a quitter. I guess I figure why start giving up now…
Blessings,
Angie
Getting back to normal
3 weeks ago
6 comments:
HUGS. . .so sorry that you are dealing with all of this. I will keep Ellie in my prayers and hopefully it's nothing. I totally understand about that 1%. I hate when people "assume" that the worst can't happen. It can, no matter how little the percentage. I'm sure that first time mothers going in with preterm labor symptoms at 22 weeks are usually just fine. Don't you think we've been through enough? Can't our lives just be smooth sailing from here on out? Sometimes I feel like, "Go pick on someone else for awhile." Like you mentioned, however, my faith still remains strong as I have an amazing daughter. I just wish we could stop worrying about them for one second.
Sending you lots of prayers & hugs!!!
Sometimes don't you feel like somethings gotta give. I always remind myself, Or TRY to remind myself that God puts in our path only things that we can handle, and that will make us stronger. But, it's so hard sometimes. I know you are feeling overwhelmed. I hope that the appointments, illnesses, etc ease up and you can try to get back to a new normal. HUGS!
Hey, Lovely! I'm so sorry you're having to go through all of this. It SO puts my little daily struggles in perspective. Thank you for being transparent in sharing your hardships and heartaches with us.
I feel so frustrated for you! It does seem like Someone is piling more and more weights onto your already-full-and-heavy benchpress bar!
But pressure is what turns coal into diamonds, right? And you can do ALL things through Christ because He gives you strength.
You're not a pessimist. You're a realist. And experience has shown you how quickly those 1% situations can add up. So nobody can fault you for feeling worried or anxious...about ANYTHING!
I'm praying for you, Friend! I wish I could do more. Sometimes praying and trying to offer words of encouragement just don't feel like enough.
Much love and a big, bloggy hug to you! Keep us posted, especially about Ellie G! (Sounds kinda gangsta, doesn't it?) :) Love you, girl!
PS - If you get a chance, go check out www.audreycaroline.blogspot.com today. It's a great post that seems to convey what you're feeling these days. Thought it might be of encouragement to you.
We are praying for a good report from the DR! You are in our thoughts.
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