The least of my concerns (but still a major concern), is our business:
The Lord has been good to us in providing amazing colleagues within the Charlotte wedding photography community who have come forward and committed to helping us with the weddings we have scheduled during the first few months following our early March due-date. Our job is unique from the jobs of others who might experience a tragic situation like this… for us, "going back to work" after the loss of a child doesn't mean heading back into the office to a 9-5 desk-job. "Going back to work," for us, means capturing the memories of the most important day of two people's lives. We understand that, after losing a baby, we will need time before we put ourselves back into a position of such responsibility! We understand why couples would be nervous to give us that responsibility after what we will have just gone through… This is why we are unbelievably grateful to the amazingly generous, talented professionals who have committed to helping us out in order to give our clients piece of mind, and to relieve some pressure off of us as we pick ourselves up from this mess and transition back into our routine.
Somewhere, there is a line…. At some point we will be ready to go back to work, full-fledged. That line looks different for everyone who goes through something like this, and thankfully, we have enough help from our colleagues to cushion us and our clients as we transition out of grieving and figure out where exactly our "line" is!
But I can't stop thinking: What if this is just too much for our clients? What if this situation turn into a deal-breaker for some of them? What if it turns into a deal-breaker for all of them?
Friends and family kept telling me: "People will understand!" Well, I'm sure they'll at least try to understand… They can only understand to an extent: as far as their personal experience and conjecture will allow. But, off the top of their heads, I'd doubt if any of them could fathom the reality of tribulation we are facing ahead. It would not be a huge stretch of the imagination to think that our situation could scare a lot of our clients into canceling their agreements with us, thinking that doing so would somehow relieve some of our stress or make things easier on us.
Them doing so, however, would have quite the opposite affect! Not only are we preparing to loose this baby, but we're also trying to figure out how to still attract clients to book us for the fall and for 2015 so that we can pay our bills… bills that are going to increase significantly if they include costs of days or weeks in the NICU for Avonlea before we lose her! The potential loss of future business means that losing current business in addition puts us in a precarious position: a position of struggle that would only serve to aggravate the loss of our daughter. Kick us while we’re down…
I'm also concerned about how to go about meeting with potential new clients with my pregnant belly in plain view… How could we possibly gracefully avoid the subject of what we're about to go through? And how would our situation NOT cause potential clients to be concerned about entering into a business arrangement with us... with their precious, irreplaceable wedding-day memories on the line when there are scores of photographers to choose from who AREN'T in the middle of a personal tragedy?
This could ruin us.
In addition to the seemingly inevitable loss of our daughter, we're having to preemptively consider the possibility of losing our livelihood.
But you know what? I would gladly hand it all over… the business, our livelihood. I would give it all away if at the end of it all, we could have our Avonlea. But we can't have her… she's sadly not ours to keep.
Friends, please be in prayer for us. Please pray that we do not lose our jobs in addition to losing our baby. We will need a reason to get back on our feet after we burry our daughter… To create beauty again, and be surrounded by happiness! To start anew.
We can’t afford to lose this business, in more ways than one.
Not only have we been dealing with professional concerns, but we also had several discouraging doctors' visits last week: 1 obstetrician appointment, 1 3D ultrasound, and 1 visit to CMC's Maternal Fetal Medicine to begin the process of getting a second opinion on Avonlea's diagnosis.
Our OB appointment on Monday was with the only obstetrician at our clinic we hadn't met yet. There are seven OB's at our clinic who we are supposed to rotate meeting with throughout the pregnancy. Whoever's on call when we go into labor will be the doctor who delivers our baby, so they like all patients to meet all of the OB's. We've definitely had our favorites (and our not-so-favorites), but after meeting Dr. Bhojwani, he definitely put himself high up there on our list!
He was so kind and compassionate, and was the first person to tell us that we actually have a say in how our baby is delivered, should she make it to term. Our perinatologists and genetic counselors have been telling us that they will not monitor Avonlea's heart-rate during labor, or perform a C-section since her diagnosis is terminal and there would be ultimately nothing they could do in the way of life-saving measures to keep her alive long-term. But Dr. Bhojwani informed us that we have a choice. The information we'd received up to that point is only a recommendation, not a rule. If we want her monitored, they will monitor her. If she goes into distress and we want a C-section, they will do one. We have no idea which option or combination of options we will decide on should she make it to term, but it was at least somewhat comforting to hear that we actually have some level of control.
We also asked Dr. Bhojwani how to go about getting a second opinion. Since the medical community's attitude towards Trisomy 13 babies is basically to give up on them (not exactly, but it feels that way when they tell you there is medically nothing that can or will be done to save your baby's life), we want to be positive beyond all reasonable doubt that Avonlea really has Trisomy 13.
We were so worried that he would tell us we were being delusional, that we were in denial and that we needed to just accept the diagnosis and allow ourselves to grieve.
Instead, he told us that no doctor should deny anyone in our situation the opportunity to get a second opinion! He discussed all of our options with us of where to go, and helped us land on CMC. He encouraged us to do a second amniocentesis through them, and have the sample tested at their lab so that we would have confirmation of the diagnosis from an entirely different organization and lab. And then the words that we do not love to hear: "the diagnosis is pretty indisputable." He had the clinic's secretary arrange a referral to CMC Maternal and Fetal Medicine.
We then had our second-attempt at a 3D ultrasound on Thursday. Ultrasound #10 for Avonlea since conception.
We invited our parents to come with us so that, in case she doesn't make it to term, they would have at least had the chance to see her alive, even if only on a screen. Of course she refused to cooperate… She did her usual thing where she pulled her feet up in front of her face and then covered her eyes with her hands. We only got a few good images of her face in between her stubborn attempts at hiding, but at least it was something.
We had'nt realized it when we made the appointment, but the 3D package at My Sunshine Baby included a special teddy bear- the tech recorded Avonlea's heartbeat on a small device which fit inside the bear! I think she'd forgotten about our diagnosis, and therefore I cannot imagine she had any idea how special that dumb little bear is to us. Every other couple who gets one of those bears probably forgets all about it once they bring their baby home… but for us, it will be the only thing with Avonlea's heartbeat still inside of it after she's gone.
I hugged that stupid bear and wept the whole way home…
Finally, on Friday, we had our appointment for the second-opinion amnio. We thought it would be a quick, simple appointment: in, amnio, out. Instead they did another whole ultrasound, measured the baby's growth and examined her heart, brain and kidneys… Her kidneys still appear "echogenic," or too bright on the ultrasound. The ventricles in her brain that indicated the chromosomal abnormality back at 28 weeks still appear enlarged- the ultrasound tech said that their cut-off for to consider ventricles a normal size is 1cm thick, and Avonlea's are measuring 1.29cm. This baby was, surprise surprise, too stubborn to situate herself so that the tech could see her heart.
But she is growing at a normal rate, which surprised us. Typically, Trisomy 13 babies grow much more slowly and are considered under-sized when born alive. The tech also looked at Avonlea's hands and feet and said she's seeing five fingers and five toes on each hand/ foot, as well as very straight femurs and ankles… she told us that Trisomy 13 and 18 babies tend to have malformed legs, which we hadn't known until she mentioned it.
A doctor came in to see us, Dr. Pollack, to review the ultrasound images and basically told us she agreed with the diagnosis based on what she was seeing. She told us we really didn't need to do another amniocentesis, but we insisted. I couldn't help it- I started to cry. I told the doctor, "We are her parents… parents are supposed to fight for their kids. And if we're only going to have her for a little while, we have to do everything… everything we can for her. And if that means doing another amnio to make absolute certain that this is her diagnosis, then we'll do it."
There was a medical student in the room observing our appointment… poor girl. I'm sure we ruined her day!
We did the amnio. And it HURT… worse than last time. I couldn't look, but Brian said the needle was at least 5 or 6 inches longer than the last one. Gah amniocentesis sucks… the pain shooting from your abdomen all the way into the core of your being, stopping just inches from your baby… it's horrible. You feel like you have to breathe hard to cope with the pain and give yourself something to focus on, but you're afraid to do anything that moves your diaphragm for fear of bumping that giant needle. It is on my list of least-favorite things ever!
So now… we wait.
We wait 10-14 days for more confirmation that our baby is dying, that we have no future with her. We wait for one more person to assure us that, medically, there is no hope… that even though I can feel her life and her strength in my belly, she will have no life or strength outside of the womb. We wait, after every hour that passes that we do not feel her kick, to see if she is just sleeping, or if she could really be gone already. Our life is a waiting-game… and all we have to wait for, according to the doctors, is the death of our first-born.
I'm starting to miss her. She's not even gone yet, but being told over and over again that I have nothing to look forward to with her… it's starting to feel like she's already gone.
I'm so tired of waking up feeling hopeless, and going to bed worried that she will slip away while we're sleeping.
I hate this… We hate THIS!
Father, God… today we are weary. This tragedy is bleeding into seemingly every aspect of our life and permeating all shreds of hope. Please do not let us lose hope… You are our only hope! We pray that you would do a miracle, a miracle that saves our baby's life and heals her malformations, her handicaps and her incompatibilities with life. We pray that you, Oh Lord, would come to her rescue and heal her body! You have brought the dead to life, and we know you can bring Avonlea to us alive… alive and healthy. We beg you to have mercy on her and heal her, Lord. Please… hear our cries, Father. Please... let us have our Avonlea to raise and to love and to show the world that you are God. Please…
***PLEASE POST YOUR PRAYER(S) FOR AVONLEA IN THE COMMENTS BELOW.
WE APPRECIATE YOU AS YOU STAND WITH US IN FAITH***