We want Avalyn to have a sibling. That single statement could open up a whole platform for debate about the benefits, or not, of having a sibling- but that's not why I'm posting this. Honestly, I am posting this because I feel like it might help someone else struggling to make a decision in a similar situation. Even if that person chooses a different path than ours, I will be happy knowing that they've done so after reading my story.
I'm also posting this because I have been so open and honest about everything up to this point. We are about to steer our lives in a different direction by taking a crazy, complicated, emotional path and it only makes sense to write about it. I'm bearing it all, and you'll be with me from the beginning... again.
So, yes, we want Avie to have a sibling. While we would love nothing more than to do this the 'natural way', we had to stop and consider the potential ramifications. The obvious is that we know that there is 1 in 4 chance of our next child having CF (anytime we conceive, the odds are the same). If we were to "roll the dice" and have another CFer, there is a chance that this poor baby would have a bowel blockage like our little Avie did and undergo the same surgeries and long NICU residency. If there was any way we could have prevented all that pain and complication for Avie, we would have!
However bad all of that was perceived to be for Avie, she was actually lucky in the fact that her bowels didn't rupture in utero. There was a concern that they would, which would have put her under stress and pushed me into an early labor. I went in to the doctor every day as her due date drew near- just to check her heart rate and make sure she wasn't distressed. Furthermore, Avalyn has been pretty healthy in her young life. There have been challenges and illnesses along the way but nothing that has required hospital stays or additional surgeries. This is good, and this is not always the case. We could only hope that if our next child had CF, they would be equally as- if not far surpass- Avie's overall health. I hate to say this but my current volume of wishing, hoping and praying is filling up my almost-3-year-old's little vessel and I don't know if I have more to pour out. I may be a one strong Mama, but I'm not sure if I'm THAT strong.
Basically, what I'm saying with all of this is that there is nothing to say that another baby affected by CF wouldn't have it as bad, or worse. By choosing to do IVF we are doing what we can to prevent a lifetime of illness.... and any other testable complications however occasional or mild they may be.
In vitro Fertilization, folks. I understand the moral dilemmas this type of this brings... it's not an easy decision to make. My husband and I started discussing it about 3-1/2 years ago.
Yeah, since before Avalyn was born. Even before we knew for sure that she had CF! In fact, we hadn't even scheduled the amnio. When IVF with genetic testing was brought to our attention, we had JUST found out that my hubby was also a carrier. We stood together on a deck overlooking a lake in New Zealand, on a Christmas vacation, stunned by the events of the last 24 hours and pondered if there would even be a second child for us. Not knowing if our currently developing little peanut was healthy or not, we agonized over the decision to have more, knowing what we knew about the odds for each additional kiddo.
Before I continue, I just want to make it perfectly clear that our decision was right for us. I do not and could not judge other parents for choosing a different path. This post is not for preaching our view, but for sharing information for anyone who might be doing research for their own family's future.
SO- to continue.... there were some decisions we needed to make, in advance, of starting the IVF process. We had sort of discussed these together over the years, but before we could purchase our "package" and move forward a serious plan had to be laid out with the doctor. The easiest way to explain this is just to say that IVF is done in cycles (think hormone injections and egg retrieval). Depending on each patient's situation, multiple cycles may be required in order to collect as many eggs as possible. In this loosely laid plan-- nothing is guaranteed, obviously-- we are hoping to have an "unaffected" embryo.
What do I mean by that? Well, I mean unaffected by Cystic Fibrosis: a non-carrier, with two normal CFTR genes. Just like having a baby with CF is a 25% for us, there is a 50% chance that any of our future kids will be carriers. We decided that going through this whole process for a 'carrier' didn't quite make sense. In our opinion, we wouldn't be doing our best to stamp out this disease. Here we are, going through all of this work (and agonizing over the decisions associated) just to have our next kid, or grandchild, potentially go through the same predicament someday?
The doctor decided that in order to increase our chances of getting an unaffected embryo (coupled with another "soft requirement" that I will get into at another time), we need to undergo 2 cycles.... and by 'we' I really mean 'me'.
My body will be put through the ringer for this, and it's already started. In the last week, I've had two ultrasounds to check for any cysts in my ovaries and polyps in my uterus. I'm also on major doses of antibiotics right now (bring on the yogurt) and I'm peeing on an ovulation stick every morning... not to mention taking prenatal vitamins and baby asprin. My poor hubby will have to endure the mood swings and emotional rides I'll be taking him through- let's cross our fingers that it's not as bad as I've heard it can be.
Well, anyway, there it is. The background and the beginning. Stay tuned! I'm sure this whole thing will put an interesting spin on my CF Mama life.