So I had every intention of doing a happy post answering all the questions everyone had as well as talk more about how we found out we were expecting and all of that fun stuff. Unfortunately, due to my annoying computer issues in which my old computer is holding onto my photos and because I know many are anxious to hear about what we are “dealing with” right now (we had some unfortunate news I guess you could say after my initial doctor visit) I am going to start with an explanation of that and then do a nice happy post about our precious little one.
*Fair warning…this is the world’s longest post with only one photo. If you want to hear about some emotional stuff we are going through with the baby then please proceed.
Nemo was the first thing we bought for this baby. We were at the Disney store
with tears in our eyes because we are freaks up in Washington shortly after finding out about being pregnant and really wanted the first thing for the baby to be something Disney. Read: we are Disney nuts. Fact..I grew up 20 minutes away from the Mouse himself and can safely say I have been to Disneyland over 50 times. I love that place. Anyway, we browsed around and nothing was screaming “I am the perfect gender neutral baby gift.” We finally happened upon the stuffed animals and we both zeroed in on Nemo. We love that little guy. I didn’t realize that Nemo was going to be a symbolic thing for me later on in the pregnancy. I’ll explain that in a bit.
We went to our first doctor appointment on September 8. We had that date etched in our minds and were so excited for that appointment. For some silly reason I have been extra anxious about this baby. I guess a lot of it had to do with the fact that we knew this was my last pregnancy since my body and pregnancy don’t really do well together plus I have watched a lot of friends go through miscarriages lately and so I guess I just kept thinking God would decide I wasn’t meant to have this one. I know I’m supposed to be anxious about nothing, but I let the thoughts get to me. I wasn’t overly obsessed, but my heart and mind weren’t in the right place. Thankfully I had awesome prayer warriors that helped so much and by the time I got to the appointment I wasn’t anxious at all…I knew that no matter what, heartbeat or no heartbeat, God blessed me with a baby, even if only for a short time. Of course all that anxiety was for nothing (except teaching me a whole lot of lessons) because we did hear that tiny heartbeat and it was the best sound I’ve ever heard. I was giddy and couldn’t stop smiling and laughing…so much so that my doctor couldn’t count the beats. Josh thought it was 138 so we shall see. I got my initial blood work done that appointment..left almost passing out every chance I got…but the appointment was done and I was elated.
Fast forward to Wednesday of the next week. This was 5 days after our appointment. I was in the bathroom getting ready and Eden had been playing with my phone. I picked it up and realized I had a missed call from an unknown number. I knew it was my doctor. The funny thing is I figured I would hear the words “you are low on iron” since I had forgotten that I was supposed to start supplementing with iron during pregnancy. So, I quickly dialed the number so they could tell me that and I could go back to my day. That’s not at all what I heard. Iron was never used in that conversation. The nurse who had called said, “you had an abnormal result in your blood work.” Again, I am just waiting to hear all about my iron count. “You tested positive as a cystic fibrosis carrier.” Excuse me, WHAT?! I didn’t even know that was a possibility! Somehow I stayed level headed..asked her what the next steps were..and promised I would call her back once we got the next part figured out (I’ll explain that in a second). I hung up. Josh was giving Eden a bath upstairs so I walked up, still feeling okay, and the second I opened the door I fell over in sobs. It wasn’t the words “cystic fibrosis” that got me at that moment, because honestly as much as I thought I knew what it was, I really had no clue. It was the pure shock. I have had a baby already. No one told me this. We would have rethought trying for baby number two if we thought this was a possibility.
The next step was for Josh to get a blood test to determine if he too is a carrier. We had no idea this was going to be so complicated. It was a full week of phone calls, tears, frustrations, and serious advocating for our baby. Josh doesn’t have conventional insurance since he is Native American and we had never had to deal with it before so we had no idea what to expect. Honestly though, now I can look back and realize that somehow having us both advocating so passionately for this baby we have never met brought us closer to each other and closer to our baby. No one was going to tell me they couldn’t help this child. Mama bear came out in full force.
Finally, after lots of help from my nurse at my doctors office (seriously..you’ll be hearing lots of raves about my new doctor…I love her and her staff SO MUCH) Josh was able to get tested yesterday. It will probably be another week (or at this rate WEEKS) before we find out the answer.
Here is what I know. The chances of Josh also being a carrier are quite low. However, I like to point back at the fact that we had no idea cystic fibrosis was somewhere in my family (it is genetic). It is mostly found in people originating from Northern European countries. With me being one quarter Filipino and Josh being 1/123345666777 Native American (seriously though he hardly qualifies) I figured my chances would be better than his to not have it! So, while many are trying to make us feel better by saying the chances are low, I don’t look at it that way. There’s a reason why I don’t gamble…odds are always against me. Now, the baby can only have cystic fibrosis if both parents are carriers. If Josh isn’t a carrier then both our kids could have a chance of being a carrier, but that’s it (they will both want to get tested along with their spouses before having children). Here’s the next part to that which will explain why Eden does not have cystic fibrosis even if Josh is a carrier…there is a 25% chance that the baby would have cystic fibrosis if both parents are carriers. So, yes the odds are in our favor. But, obviously there are people with cystic fibrosis so to me its not a done deal that our baby won’t have it.
I explain it like this. Each parent has two genes they give to their child. Parents who don’t have cystic fibrosis give their child 2 good genes and all is well. In our case I have one good gene and one bad gene. If Josh is a carrier he will also have one good gene and one bad gene (if we had both bad then we would have c.f.). If he doesn’t he has 2 good genes. Our baby could then get one bad and one good (thus would be a carrier), two bads (would have c.f.), or two goods (not a carrier and doesn’t have c.f.). Not scientific I am sure but it helps me explain it.
So, next step. We wait for Josh’s test results. If he tests positive we will then meet with a Perinatologist in Portland and learn more and decide if he want to do further testing. Our answer will be no. We do not believe Amniocentesis (which is how they test) is a safe test for us. Instead, we will proceed believing that our baby has it so we can prepare as best we can. Then, if our baby is born with c.f. we feel a bit more prepared for the life that is ahead of us. If not, then we have lots of knowledge, but don’t need to use it! No matter what this baby is God’s blessing to us. If our baby has c.f. then God obviously believed we were the right parents to take care of the baby. We feel confident that we can do it. The silly thing…I’m most worried that I won’t know how to say the “right words.” I feel like there is a right way to talk about children with different abilities and I know I’ll mess it all up. Definitely something I’ll be praying hard about.
We feel blessed by this baby already. We had already discussed being open to special needs adoption so why wouldn’t we love our baby no matter what? We are ready to get some results and move forward. It’s been a frustratingly long week.
So, back to Nemo. I started thinking about the fact that Nemo was born with a disability. He had a small fin. And yet, that didn’t stop him at all. I just found it so ironic that we were looking at possibly having a baby that may not get to live the life we would have planned for him/her, but I doubt that’ll keep our child from doing great things. Who does what their parents planned for them anyway?! So, feel free to make fun of me for my comparison, Josh did, but to me it was something that helped me.
If any of you made it through this post, congratulations!!!! We appreciate all of your prayers and support…we have felt every bit of a it. Can’t wait to tell you more about this precious baby that we are kind of obsessed with. We even made our first “big” purchase for the baby!
Wondering what Cystic Fibrosis is, here is a link to more info.
“God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging.”
Psalm 46: 1-3
**I tried to add comments back to my posts, but so far I don’t seem to be successful. I have a fear they are gone forever 😦 I had gotten rid of them because I realized my focus became on how many comments I was receiving and forgetting that this blog was really meant for us and those that wanted to keep up with our crazy family. I feel like it no longer hinders me and yet apparently I can’t get them back. If you feel the need to comment you are always welcome to email me at thecrainsnest[at]gmail[dot]com.