To live is so startling it leaves little time for anything else. ~Emily Dickinson
Plan A: a miracle
march 23, 2010:
i didn't sleep all night. i was too excited about the coming day where we would learn the gender of this new surprise baby who was doubling in size everyday, bouncing around in my womb. it had seemed like a year since i peed on the magic stick that told me i was pregnant. that little stick that changed my life. in reality it had only been a couple months and thankfully in those months my heart had really begun to mend and get excited about this new arrival. i spent those months seeing a counselor each week, and as we processed the trauma of my previous birth experience and the loss i had felt with the Lord, i started to remember Him. to remember His history in my life. the timeline. the relationship. i never could have made up in a million years the encounters i have had with Jesus. i read old journals, listened to old teachings and worship cd's. and slowly my heart started remembering too. i looked to this day, march 23, 2010, as the day that me and my baby would bond in a new way. a bond that would get me through the rest of the pregnancy and the birth. this baby was special. i couldn't wait to know.
as the words "it's a girl" came out of the technician's mouth our room erupted with laughter, tears, and squeals of delight. i lay on the table, with goo covering my belly and just cried. my mom had noah - who was very restless after having to wait in the waiting room for over 35 minutes. so she took him outside for a some fresh air. the technician finished up, and asked mark and i to wait in a room for the doctor to come speak with us. as we waited we both began texting friends and calling family. the elation we both felt was so overwhelming. a little girl. we couldn't believe it. i rubbed my belly with a new sense of pride. the bond i was anticipating was definitely there. my family was complete. i couldn't be more thankful for this little miracle.
when the doctor came in she did not share in the celebration that filled the room, she didn't even seem to notice it. she carried the printouts of the ultrasound and sat very close to me with concern in her eyes. "we were unable to get a clear image of your baby's heart." -what?- she showed mark and i a series of images that looked like blobs and explained that at this point (i was 18 weeks), they should be able to see all 4 chambers of the baby's heart, and our baby didn't seem to have them. i went numb and just stared at her. mark sat in the corner and kept texting friends; he doesn't trust doctors what-so-ever, so he didn't feel concern. she then proceeded to explain that we will need to have a follow-up level II ultrasound at CMC, where they have more specialized technicians and doctors who can better diagnose if the baby has a heart condition or not. she had already made me an appointment for the following day - to stress the importance of having this done immediately.
as we left mark still had his "i don't trust doctors attitude", and didn't think we needed to go to the level II ultrasound. but me....i was utterly and morbidly crushed. the term "buzz kill" doesn't even scratch the surface of what i was feeling. we all got in the car to drive home and we explained the whole thing to my mom - who was in the back seat with Noah. i was a wreck. mark was in denial. we decided to sleep on it and see how we felt in the morning. i, of course wanted to know my baby was ok, no matter what the cost. the congratulations texts washed in throughout the rest of the day, but i couldn't bring myself to respond. i felt as though there was something wrong with my own heart. it wasn't working properly all of a sudden. again, another sleepless night.
the next morning i had an idea to call my previous OB, Dr. Peacock and get a second opinion. they had me come in right away that morning to have another look at out baby girl's heart. after 45 minutes of searching for the "cross shape" in her heart, the images also came up empty. i met with Dr. Peacock after the ultrasound and sobbed like i have never sobbed before in my life. being that we have been through a lot (he delivered Noah), he held my hand as i slurped back tears and snot and asked questions that requested honest answers from someone i trusted. he shared quite a bit with me about heart disorders and how rare they are and that there is absolutely NOTHING i did to cause this, and how the heart forms during weeks 3-8 of gestation, and that there's a possibility she may also have a chromosomal disorder as well. my head was spinning and i choked on my own words. he gave me a hug and told me i had to be at that level II ultrasound at CMC later that day, no matter what mark thought. i trusted him. it was good to get a second opinion, but the news was more devastating than i could handle.
it's shocking i actually made it home. the number of tears that came out of my face is hard to determine. and as another hammer fell, it felt like it had fallen right on my heart. it definitely was not working properly now. i struggled to breathe.
my mom cancelled her clients for the rest of the day. my sister-in-law magically appeared to watch Noah, and mark told work what was happening so he could come with me. i won't go into much detail on how the rest of the day panned out because, to be 100% honest i don't remember that much. what i do remember went something like this:
super fancy ultrasound machine. sweet nurse. sweet baby girl, dancing on the screen. she looks perfect to me. she's so beautiful. i can't breathe. mom hands me kleenex; i must be crying again. mark holds my hand. we both are sweating like pigs. the doctor comes in. she's soft-spoken and carries more concern in her eyes than anyone i have ever met. she also does an ultrasound. my little baby girl is swimming. everything looks absolutely perfect to me. i want to go home. no, i want to go to the beach. i close my eyes and imagine myself on a tropical island somewhere. laying on the white sand, letting my worries drain out of me as the sun warms my skin and i feel happy and carefree again. the doctor leaves to make a phone call. she returns and explains she got me an appointment with a pediatric cardiologist - tomorrow. tomorrow. tomorrow i am going to chicago. no. she says if i don't keep this appointment i may never be able to see this cardiologist because his office won't accept the uninsured. bastards. what's wrong with america? they sit me up and the doctor starts explaining what's wrong. there's definitely something wrong with her heart, but she may also have a chromosomal problem. if she has a heart condition and trisomy 13 or 18, she will not live. considering you are uninsured and that you had such a traumatic birth with your son, you may want to consider terminating the pregnancy. can't breathe. i need to lay down - NOW. the only reason i'm telling you this, jessica is because in the state of north carolina the cut-off for termination is 20 weeks, and you're 18 weeks now. oh god....i'm going to throw up. someone get her some water. we could go ahead and do an amniocentesis on you today, right now and in a few days it would tell us what chromosomal disorders your baby might have. that way you can begin to prepare your life if you baby has down's syndrome, or turner's syndrome, or trisomy 13, 18, 21, 22, 45, 99, 11, 2, one million and forty five. can't breathe. lay down. i am laying down. just breathe. close your eyes, jessie.....go back to the beach. i just wanna go to the beach.
the rest i remember is blurry too, but we declined the amnio because i was feeling so sick and coming in and out of panic attacks. we held onto the appointment with the cardiologist and went home. i didn't even have any tears left to cry. apparently my mom contacted my aunt (in chicago) and she changed our tickets so that we'd still be able to go - just a day later. i tried to explain as much as i could to my sister-in-law when we arrived home, but i can't remember what i said. mark called some close friends to ask for prayer and i, still wanting the beach, wanting to be warm all over, made a hot bath and did my best to drown my worries in it. the last thing i remember is hugging and kissing the daylights out of my son, mark forcing me to eat a grilled cheese and then going to bed around 7:30.
surprisingly i awoke the next morning (thursday) feeling a peace that couldn't be explained. the day from hell was over, and that made me feel better. i played with noah all morning and loved on my husband. we didn't say much. what was there to say? i took a walk and sat in the sun - thank God the sun was out. i decided to email a very small number of friends to be praying for the appointment and for us. somehow, i magically felt better. mom met us at The Sanger Heart Clinic at CMC and we all got some coffee before seeing the cardiologist. the nurse was really sweet and both she and the Dr. did the ultrasound together. as i watched my baby girl on the screen, i felt like she was strong. she was feisty. she was going to be a lot like me. she was going to make it. before the doctor said anything, i just watched her dance and wiggle and arch her back like she was going to be ok. in speaking with them later, mom and mark felt the same way. that ultrasound was called an echocardiogram and it had colors. it focused in on the heart and was able to show the flow of blood in and out of her heart. the fact that her heart is beating, and has been beating since the beginning is a good sign. for the first time since tuesday i said a little prayer for her. "please Lord....let my daughter be ok".
i cleaned up the goo from my belly as the lights turned on and we were directed to another room down the hall. the Dr. showed us some pictures of normal hearts first so that we could better understand what was wrong with our baby's heart. the diagnosis he gave is known as Tricuspid Atresia with a Transposition of the Great Vessels. if you're anything like me, you may not know a whole lot about the heart.
the good news was this: she will be able to have surgeries to correct her issues. the other good news was: based on this particular heart condition she only has like a 2% chance of having a chromosomal disorder, like Down's. everything else on her body looks completely normal, which is really, really good news. he believed we didn't need to have an amniocentesis, unless we just wanted it for "peace of mind". right now we can't afford $5,000 for peace of mind. the bad news is: her heart is not normal and never will be, even after her surgeries. she may not be able to play sports growing up, or do other high energy activities. she will require 3 major open heart surgeries within the first 3 years of her life. #1 will take place in her first week of life. #2 when she is 6 months old, and #3 when she's 3 years old. each surgery is in the 90th percentile for success, but can take up to 6 weeks in the hospital for recovery.
this is our baby. this is how she was formed. i can't allow myself to ask why. i can't allow myself to get sucked into the black hole of "why me?". this is where i am today and i am choosing to finish out this pregnancy as positively as i can and just hope and believe that she will make it through her surgeries. i have to believe the Lord has a destiny for her life; she has already been through so much. i am choosing to not worry and not waste my summer being sad and filled with fear about the future. i'll have plenty of time to worry when she comes. why do it now? this is surely the hardest thing i will ever have to do in my whole life. i am not looking forward to feeling helpless and waiting during her 4 hour surgeries.
plan A: a miracle
yes, of course we are praying and asking the Lord to heal her heart before she is born. we are asking other people to pray as well. but i have to be honest here and tell you that i cannot put all my eggs in one basket. i have already endured so much heart ache in the past year with being disappointed with the Lord. i may not have the faith to believe for her healing....but that's where i need my friends and family. do i believe that the Lord could heal her? yes. but even when Jesus walked the earth he didn't heal everyone. at the pool of Bethesda, a place where sick and crippled people hung out everyday, all of them needing a miracle, a touch from Messiah. even there....Jesus only healed one person and then he left. i am not sure why the Lord chooses to heal some and not others. there's much about the Lord that i don't understand. but i do believe it can happen. i just can't fully own that it WILL.
plan B: heart surgeries
mark said he was amazed that someone actually went to school to learn how to perform open heart surgery on tiny 7 lb. newborns. that is a miracle. we are beyond thankful for the team at The Sanger Heart Clinic and Levine Children's Hospital at CMC. i have switched OB's and will now need to deliver at CMC, where the cardiologist will be called as soon as i go into labor. all of this gives me some peace. people who know what they're doing will be present when she is born to take care of her broken heart. i am thankful for doctors, medicine and hospitals.
our concerns are many, as you can see. another one being that we are uninsured. due to the fact that this pregnancy was a surprise to begin with, we were unprepared as far as insurance goes. and then of course no one ever imagines that their child will be born with major complications. i spent 5 hours in the department of social services applying for medicaid a few weeks ago. we are praying that medicaid will accept us and cover as much as possible of our medical bills to come. my aunt (who is an accountant) is also helping us look into grants and scholarships for congenital heart defects. there's got to be money out there somewhere for people like us. we're good people, we pay our taxes! but money is what we will need...and lots of it. we're already being billed for the 3 appointments we had that week and it's over $6,000 already. not to mention the basic costs of OB, labor and delivery. i was going to Lake Norman Hospital, one of the cheaper hospitals, and now i have to deliver at CMC, one of the most expensive hospitals. so yea....i applied for medicaid and i also wrote Ellen Degeneres. what? she gives away money like it's toilet paper. you never know. and apparently on Mother's Day she has a big special where the whole audience are all expecting mother's. i wrote her a week ago. so maybe she'll call me and want to have me on her show and pay for all our medical bills. you never know. i also told her about our band, Public Radio.
so i have finally gotten up the courage to blog this publicly. it's been a rough couple of weeks, i can't even describe what we've been through. i am writing it now, finally because i have another echocardiogram this thursday. it will be the last one until we are close to her due date august 20. this ultrasound will show the cardiologist in more detail what the surgeon will need to do exactly at that first surgery, because now her heart is bigger than when they first saw it. why am i telling you now? because i need your faith. i would love to have a strong heart that believes we'll walk in there Thursday and the Dr. will see nothing wrong at all - but i don't feel totally confident in that. if you do, and you pray, then i am asking for your support. i am open to your phone calls and emails, but if i don't respond, please don't take it personally. this is all more real to me than it will ever be to you. she grows and kicks inside of me everyday and night. before you say too much, put yourself in my shoes.
i am believing for plan A, but am very, very thankful for plan B.