This Tuesday, I will be 37 weeks pregnant. And I am terrified!
Our OB's have said they wouldn't be surprised if (providing her little heart doesn't give out before then) she decides to attempt her entrance into the world 2-3 weeks early! I wish they had told us back when we received her diagnosis that Trisomy babies have a tendency to be born early… had we known this, we would have made some different decisions, or at least timed some of our decisions differently, in preparation for the possibility of her surviving birth.
You see, we enrolled Brian in a new insurance plan on January 17th. Had we clicked "enroll" just 2 days earlier, on January 15th, his coverage would have gone into affect on February 1st. But, up until 2 weeks ago, we were operating under the assumption that IF we delivered that long before our March 11th due-date, we would be delivering her stillborn due to a "fetal demise." Under those circumstances, she wouldn't be incurring any medical expenses and therefore not need to be added onto an insurance policy. So, we took our time doing research… calling brokers, selecting from an overwhelming plethora of carriers and plan-options. By the time we enrolled Brian in his new plan, the effective date for his coverage to begin was March 1st.
Well, the only potential for her to need insurance would present itself if she survives birth… and with a March 11th due-date, that shouldn't happen until after March 1st, right?
That's what we thought.
And then our OB told us the other week that it's likely that I may go into labor between 37-38 weeks!
Cue: pantic attack.
Apparently, a pregnant body can tell when something is not right with a fetus (like, for instance, a trisomy). If the body senses that the fetus it's growing is not compatible with life, it tries to evacuate the fetus. This is how it was described to us, anyway. It sounds horrible… like my body wants to get my baby out of me because she's a liability or something. My heart and my mind want her to stay: living, growing and strengthening as long as necessary to give her the best possible fighting chance at life outside the womb. It's killing me to think that my body could betray me (and her) at any moment.
In addition to the horrifying thought that my body essentially wants to purge my baby, we're ghastly frightened at the thought of what the medical expenses might look like if we don't have an insurance plan to add her onto. I am still covered under my dad's insurance since I am not yet 26… so labor, delivery and all other medical expenses incurred under my name will be covered, but we cannot add Avonlea onto this policy- she has to be added onto a policy in Brian's name. I recently applied for and have been accepted into Medicaid through the state of South Carolina, which you'd think would alleviate our financial worries since Medicaid covers babies' medical expenses for their first year of life... However our OB practice is through Novant Health/ Presbyterian Hospital, a North Carolina provider. We did not realize when applying for Medicaid as an SC resident, that NC providers would not accept SC Medicaid! This is an issue because we've been making monthly payments to Novant/Presby ever since my pregnancy-confirmation appointment to cover the 20% of my labor and delivery costs that would not be covered by my insurance. If we switch hospitals now, not only will we be dealing with a medical staff who is not at all familiar with Avonlea or our case, but we'll also lose the money we've invested with Novant/Presby and have to pay my 20% out-of-pocket expense all over again. Not to mention, the only SC hospital within an hour of our home is horrible! We need to be delivering at a hospital with a palliative team and NICU we can trust… and SC hospitals are just not an option in that respect.
All that to say, we desperately need this little girl to make it to March 1st. She can come anytime after that! But until then, we are living in fear: fear that if I go into labor anytime before the end of the month, moving forward with Presbyterian and seeing if she makes it through birth will then present a difficult journey of figuring out how to pay for her care there in the midst of all the other horrifying medical decisions we'll be faced with making for her.
We're also still fearful for the impact this situation will have on our livelihood. We may have only hours with her after she's born… we may have days, weeks? The doctors are now telling us it's possible (but not likely) we may have a couple of months. And whatever time we have with her, we want to steward well. We want to be fully present with her, soaking up every minute we can… but we chose a profession years ago that will make this very difficult. We are contractually obligated to photograph several weddings during the months following our due-date and thankfully we have many gracious, talented colleagues in the Charlotte wedding photography industry who've committed to covering those weddings for us so we can deal emotionally with whatever may come during those months. The majority of our clientele have been AMAZING: incredibly understanding and supportive, willing and grateful to accept our backup-plans and even offering to bring us meals or do our laundry! We tend to attract the type of couples that we click with on a very personal level anyway, and so the majority of our bookings end up turning into friendships along the way. We couldn't be more thankful that most of our clients who we've explained our situation to have been more than understanding.
But that doesn't mean our ALL of our clients are being very understanding, unfortunately. And an unhappy client can turn into a negative impact on our business in the future. As we listen to a couple of them in particular lament about how stressful our situation is for them as they work on their wedding plans, we struggle between a feeling of guilt for causing them strife, and the urge to scream!
"Really? Is this stressful for YOU? Does is annoy you that our personal tragedy is causing your plans to have to change a little bit? Gosh, we're sorry that you're going to get amazing wedding photos taken by someone OTHER THAN us.
This must be really rough on you."
God, how I WISH that when someone had called ME with the worst news I could've imagined receiving, the news that our daughter was going to die, the caller could've also somehow presented ME with a plan to make it all better!
But this is impossible, because Avonlea is irreplaceable. There's NO scenario where the genetic counselor could've called and said, "Sorry your baby's diagnosis is fatal. But don't worry! We have another baby for you, since yours isn't going to make it" or "Your daughter has a lethal chromosomal abnormality, but we can fix it!" Nope… we didn't GET a bright-side with our bad news. No options. Nobody who's able to help us find "a solution that works for everyone."
We JUST get a horrible tragedy.
But guess what we've done for our clients? In the midst of what HAS to be one of the worst tragedies a person could ever be asked to face, we had the presence of mind to think about THEM and preemptively cover their needs so that they wouldn't have to stress over finding a replacement or the expense that could incur them. We took care of it. For them. And STILL I am detecting whiny bride-zilla tones about how disappointing it is for them that we could allow this sort of thing to happen... as if it is OUR fault that our baby is terminal… as if this was all some sort of diabolical scheme to "inconvenience" them.
Perspective, people! This road-bump in your plans is the most devastating ditch Brian or I have ever been thrown into.
Please… have some perspective.
UGH. I don't want us to have to THINK about any of this! I just want to focus on Avonlea…
Feel my baby alive in my belly and cherish every squirm of her tiny body.
Unfortunately, there's no one else that CAN think about some of these things for us. We HAVE to worry… we HAVE to problem-solve. We don't have any other choice but to simply DEAL with all this stuff that's way out of our league.
In the meantime, I'm feeling the physical pangs of a woman in her last few weeks of pregnancy more than ever. It doesn't take much to wear me out physically and… emotionally? That's another whole story. I find myself breaking down doing the dishes, in the shower, and in the middle of the night out of a cold sleep. No trigger, no explanation necessary… it all just comes crashing down on me at once. The insurance… the business… and the reality that my baby is just going to die. It all becomes too much and my lungs begin to feel restricted. My sinuses are instantly out of commission and I just… cry. I cannot imagine this is good for Avonlea.
The nesting process for the parents-to-be of a terminal baby looks very different from the nesting process of every other expectant mother or father. Instead of spending the third trimester hanging pretty wall-art in Avonlea's nursery, we're purging our closet of things to donate to Goodwill, scrubbing the baseboards in our bathrooms and selling a van-load of stuff on eBay and Craigslist… Her room is ready enough for her to live in in case she gets to come home for a little while, but not polished to the point where the beautiful dreams I had for her nursery before we got her diagnosis would become impossible to look at after she's gone. We're focusing our "nesting" energy on making our house a place that will be comforting to come home to if we lose her very soon.
And I hate it! I WANT to be framing prints of vintage storybook illustrations to hang above her crib. I WANT to be putting up shelves in her closet with little pink baskets to organize all of her adorable clothes. I want to NOT feel guilty for wondering whether or not it'd be wise to buy a glider if I may only get to rock her to sleep once or twice. I WANT to be finding places in her dresser and throughout the house for our baby-shower gifts… from the showers we canceled.
I WANT what every other first-time expectant-mother gets during her last trimester:
joy, possibility, everything to look forward to…
Friends please do not cease to pray for us! Pray that Avonlea would hold out until after March 1st to attempt birth! Pray that our business and subsequent livelihood would not be negatively impacted by our imminent loss. Pray that the Lord would continue to draw Brian and I closer, as He has already been so faithful to do, through this situation. Pray for us to find relief from our sorrow in whatever moments of joy we may come across. And pray that the Lord would have mercy on us, and on Avonlea, and heal her from this terminal chromosomal abnormality! Pray that He would touch her, transform her and restore her to us. We believe in our God, the God of the Bible, the God who is the same yesterday, today and forever, the God who parted seas, raised the dead and made a way for sinners like me and Brian to spend eternity with Him… we BELIEVE that He CAN heal her. We do NOT believe that we deserve for him to, though. We do not expect Him to. But we have faith that He can. And if He chooses not to heal her, that faith will not be shaken. We will absolutely be heartbroken, but Satan will have no foothold to use that to cause us to doubt our God.
Please, loved ones… Pray.
Heavenly Father, we are riddled with worry now. We are in mourning over our expectations for this pregnancy, and over our expectations for Avonlea. We want her, Lord. She is such a deep desire of our hearts. We desire healing, restoration, and glory to your name through it all! But we also know that you are sovereign… we know that you have the ultimate good in store for us through your perfect will, and that ultimate good might involve losing our Avonlea. But we don't want it to, God! We desperately beg you that your plan be a plan of healing… as long as she is living, we have hope in Jesus that you can still deliver her to us, healthy and perfect! We beg you for this, Lord. We ask that you draw near to our daughter, YOUR daughter, and take away her Trisomy 13. Let her live, father. Let us be her parents, here on earth, for the rest of our lives! Please Lord… We love you. We are desperate for you now. Please heal our baby…