The Emotional Side of Waiting

The maternal fetal specialist called this morning with more results from my amniocentesis. The full karyotype that looks at all of Bridget's chromosomes in detail and can show up other chromosome disorders and abnormal genes aside from those tested in the FISH test will still not come back for another week or so.  But we did receive more good news this morning!  The lab used part of the amniotic fluid to test for any fetal infections or parasites, which can cause the echogenic bowel.  Thankfully these tests came back negative!

So yet another hurdle crossed.  To be honest, I had no idea they were using some of the sample to test for an infection or parasite. I assume the doctor explained this to us, but I was in my own head and sobbing by the time we were discussing the amnio so I didn't hear much after the whole brain cyst announcement.  (Which, by the way, are more common than I realized and almost always resolve themselves.)

I had a rough day yesterday and didn't feel well. My energy was extremely low and I generally didn't feel right. So of course I was worried that something was wrong with me or the baby. I spent the day Googling the time frame for a miscarriage after an amnio.  Most instances occur in the first 72 hours, but a miscarriage up to 3 weeks after the amnio is said to be correlated to the test. I also was worried that I was leaking amniotic fluid. Normal pregnancy discharge which typically doesn't give you a second thought suddenly becomes the enemy in the days after an amnio.  Is that fluid or discharge? This question is on repeat in my brain.  The doctor assured me that I'd know if I was leaking and would have to change panties as it's a constant stream, but I am still paranoid.

And of course I started questioning my decision of having the amnio at all.  I still think it was the right choice given all that was found on the ultrasound, but as we get further away and positive results are coming in, I'm wondering if I made the right decision. I didn't even ask any questions about the test when it was suggested. I just said yes. I already knew there was a miscarriage risk. But I didn't even ask what all was being tested for. I didn't ask if there was an alternative. I didn't take time to consider what I would do with the results.  Well, if I'm being honest, in that moment when she was listing off all the bad things they'd discovered, my first thought was, I cannot do this. I cannot raise a child with a severe disability. I'm not strong enough and it's just not happening. I can't do that to my boys. I will not do this. So I guess I didn't need time to ponder what I'd do with the results. My gut reaction was clear.

As was the one question I did ask after saying yes to the amnio: "What is the cutoff for an abortion in the state of Georgia."  The words just came out of my mouth. I needed to know if there would even be an option on the table. I'd still want to know what I was dealing with even if I had no option but to carry the baby to term, but that wasn't why I asked the question. When she said 24 weeks, I was relieved. I was 20 weeks + 4 days and even if the results took two weeks to come back, at least I still had an option. I know some people will fault me for that, but it's the truth in my thinking. I was taken aback by my own thoughts. I've always been pro-choice but I never thought I would be in the position of having to consider an abortion, never mind a late term abortion. In all honesty, I've heard the rumblings of those pushing for a 20 week abortion ban and I've always thought that was reasonable. Who in their right mind would even consider an abortion after 20 week?  Turns out, I would.

The morning before this terrible appointment, my daily Scary Mommy email summary was sitting in my inbox. One of the articles was entitled Why a 20-Week Abortion Ban Is Scary for All Women. I'd never considered this side of the debate. When I read the article that morning I certainly didn't think I'd be in her shoes, contemplating what I would do if the very bad news was delivered to me. But I encourage you to read her words.  I wouldn't ever attempt to know what is best for another person and I know that a decision like this is a deeply personal one. Yet, for many it is black and white. However, I firmly believe that you cannot possibly know what it is like to contemplate this decision until you are actually faced with making it. So far we're lucky to not actually have to make this decision, and I pray every day that we don't have to make it. But I don't think there are enough voices out there telling the personal side of this decision.  I have been feeling my baby girl move inside me for weeks now. She is deeply, deeply wanted by my family. And yet I am grateful that there are still options on the table should the last part of the amnio results come back with awful news.

Todd and I have had a lot of difficult conversations since Monday. What would we actually do? Could we actually go through with it if we were faced with bad news? Initially we were both  shocked and felt there was no way we could continue the pregnancy if we were given bad news.  And we both have felt deep shame for even having those thoughts. What does it say about my character that my initial reaction was that I would end the pregnancy? I felt that the fact that I was even considering that choice this far along made me an awful person. It doesn't. I know that now. We feel what we feel. We cannot censor our own internal feelings and to not acknowledge them will just cause guilt and residual negative feelings in what is already a difficult time.

I would say that as our conversations have continued, we both lightened our stance. We convinced each other that we were stronger than we realized. That the boys are more resilient than we were giving them credit for. We could, perhaps, handle the very bad news and continue with the pregnancy no matter the results, even if our sweet girl would be stillborn or would die a minute, an hour, or a few days after birth. It would not be easy, but we could do it.  The scariest outcome to me would be a diagnosis whereby she could survive birth but would have no quality of life. If she would suffer and be hooked up to machines and not even know us or feel our love. Would that be the best option for her? I don't know. I truly don't.

I can honestly say that at this point I don't know what decision we would make. I think it would depend on the specifics of her diagnosis. In a way it would be a relief to not be able to make a decision and to have to ride it out no matter what.  To be faced with the choice is a burden in itself, but it is a burden I would rather bear than the alternative of not being able to make medical decisions for myself and my child.

To think about the potential decision on a daily basis has been torture, but I can't escape the thoughts. It is constantly sitting below the surface.  What would I do?  I pray with every fiber of my being that I do not have to find out how I would answer that question.

The Kindness of Others

The shining light of this week has been the outpouring of love and support we've felt from friends both near and far.

On Wednesday we were brought dinner by three different friends in Macon. I have two beautiful bouquets of flowers sitting on my mantle. We received a gift card to a local restaurant from out of town friends. My husband's coworker gave me a beautiful, hand-carved palm cross that I've been holding often.

We have received countless emails, cards, texts, phone calls and messages on Facebook.  People have shared our story and added us to prayer lists.  Strangers are praying for us and our sweet Bridget.

My friend's brother is a priest and she texted me Wednesday afternoon to let me know her brother had dedicated his morning mass to Bridget and our strength during this difficult time.

Another friend sent me this sweet message about her three year old daughter: Tonight we said our prayers and she got up and got a drink And then said "I need to pray again. God please look out for baby Bridget" and did the sign of the cross! She has NEVER done that before (pray on her own like that OR the sign of the cross!).

A childhood friend of my sister in law, who I've never met, sent me a message sharing a story about how my in laws helped her through a difficult time in her life and she hoped that what goes around comes around.

A few friends who have received the bad results that no one wants to receive have reached out and offered to share their very personal stories if I needed someone to really talk to about how hard this can be when the cards don't fall your way. They have reopened wounds and shared their vulnerability with me and I'm forever grateful for their offers.

And through the magic that is Facebook I was connected with three different mommas who have, or are currently pregnant with, babies with kidney issues.  Talking to other moms who know exactly what we're facing is extremely helpful and I would never have met these ladies had it not been for others getting us together.

So thank you again to all who have reached out, prayed and sent positive vibes. I think people often hesitate to reach out when someone is going through a difficult time for fear of saying the wrong thing. Please know that there isn't a wrong thing to say. I'm not dissecting your words. I'm grateful for them, whatever they may be. To know we are not alone is priceless. To hear your thoughts and fears and hopes for us and Bridget are the very thing that is helping us get through this. We feel the love, we truly do.

FISH Results

First off I have to say a HUGE thank you to all of you for sending us prayers and for supporting us over the last few days. It has been one truly hellish week waiting and wondering what is going on with our sweet Bridget.  Knowing we have so many people reading our story (over 4,000 so far!!!!) and sending us good vibes has made this nightmare a little less dark.

Last night we were surprised with a call from my doctor - she had gotten the first part of our results back much earlier than we were anticipating. So the Rapid FISH testing (fluorescent in-situ hybridisation) only examines chromosomes 13, 18, 21 and the sex chromosomes (X and Y), but these are the most common abnormal chromosomes, so getting these results is a big step in finding out if something is wrong genetically.

We are so thrilled to share that these results came back normal and great!  She does not have any of those most common chromosomal anomalies. We were able to breathe a little easier last night and feel like this is the first big hurdle we've crossed. To say we are elated is an understatement.

We have another 10-14 days to wait before we have the full results from the amnio as it takes time for the lab to culture the cells and examine the chromosomes. This final result will examine all of Bridget's chromosomes and let us know if anything is abnormal.  It is of course a possibility that something will show up in those results but we are continuing to pray for normal results.

Regardless of the genetic tests, we still have a long way to go to get Bridget here. She has the kidney issue that is unlikely to go away.  We are hopeful that all we are dealing with is her bad kidney and after imagining so many awful scenarios, we feel like a bad kidney is a walk in the park.  Of course it's not necessarily going to be an easy walk.  More like a hike through rocky terrain.  But we know we can do it.

I am scheduled for appointments every 3 weeks with my maternal fetal specialist to monitor her kidneys and her other organs.  Her belly is already very distended so this is a concern since I am only 21 weeks.  To put it into perspective, she is measuring in the 94% for weight right now and is estimated to weigh 1 pound.  All of my pregnancy books say babies at 21 weeks only average 10.5 ounces.  So her big belly is clearly throwing off the measurements.  I believe that the concern is that there is pressure being put on the other organs and the enlarged kidney can interfere with their development. And if her belly is too big she won't be able to fit down the birth canal so I'll have to have a scheduled c-section.  This is far from the unmedicated, doula and midwife-assisted birth I had envisioned, but bring on the knife if it means this girl gets in my arms.

The doctor is also referring us to a pediatric cardiologist to double check that Bridget's heart is developing normally and doesn't have any problems. We'll likely see him between 24 -26 weeks. I will also go to my regular OB every 1-2 weeks for ultrasounds to monitor the amniotic fluid level. Bridget is making all the fluid at this point and with only one working kidney it is possible the fluid level will drop.  I don't know enough yet about the odds of that or what happens if it gets too low, but these are all questions I plan to ask at my next appointment.  I know there's a concern she'll have to spend time in the NICU as my doctor said they'd also schedule us to visit them. So as you can see, prayers are still needed!

I am now allowing myself to dig into this kidney issue a little more and really want to wrap my head around it. I know we are not out of the woods with the genetic issues, but I'm really hopeful that our only issue is her kidney.  I'm even thinking about big ass hair bows, smocked dresses and pink sequence shoes, but I'm still refraining from buying anything until we get the full amnio results.

It is sinking in that we're having a girl.  The boys are having a sister (though we still haven't told them yet). Our family is growing and I just pray we'll be a family of 5 in 2016.

I never would wish this waiting on anyone and don't think you can know what it is like unless you have walked in these shoes. The thoughts that have crossed my mind since Monday have been hard and I was surprised by some of my gut reactions to the news that there may be something seriously wrong with my baby. Another time I'll go into that because I think it's important to share my experience so others don't feel so alone if they are faced with this situation. But while we're still waiting to make sure everything is as OK as it can be I'll refrain from talking about women's choices and the reality of having to ask yourself "what would I do", as I realize those hard decisions could still be on the table.

To my friends who have done this, the emotional trauma (as my one sweet friend called this wait) is real and I pray for healing for those of you who have dealt with the outcome that no one wants. And thank you especially to those friends who have reached out and shared their awful experiences - my heart hurts for you.  To anyone currently awaiting amnio results, have faith and lean on those around you. Don't hesitate to ask for prayers and love because sometimes that is the only thing that can get you through a day.

And to all those who have sent us light, love and prayers this week: We have felt your love. We have felt your prayers. I am so humbled by the love and warmth we have received this week.  God is good and you all are amazing. 

A Different Wait Begins

I so wish I didn't have to write this. I wish I could sit here and write that my level 2 ultrasound yesterday was positive and a good experience. But yesterday was one of the hardest days of my life. And we are yet again in another waiting pattern.

We went in to our appointment yesterday knowing something was wrong with the baby's kidney. Cysts were found in the level 1 ultrasound last week, but that was all we knew. We had questions - what are they filled with? Is there a chance they're cancerous? Are they anywhere else? What does this mean for the baby's future?  I wish we'd come out of the appointment with the answers to those questions and only those questions.  Instead, we're now waiting to find out if this baby is viable. And it is an absolutely heartbreaking experience.

My ultrasound was over an hour long. The left kidney was clearly not right. Dark space on an ultrasound means fluid. Where the left kidney should have been was full of dark space. The tech said it was either multiple cysts in the kidney or the kidney was full of fluid and wasn't draining. She said the doctor would tell us for sure. She also thought the ureter was blocked or swollen, meaning that the urine wasn't leaving the kidney.  We knew there was a kidney issue so watching all this on the screen wasn't difficult. We were just glad to be getting more information.

We also learned that we're having a baby girl.  Our first after two boys. I wish I could say I was excited by this news, but everything else dulled what should've been a joyous announcement. Also, learning she was a girl has made her even more real. She has a kidney problem. She potentially has other, bigger problems. She. We're having a girl.  I think that fact hasn't quite sunk in yet either.

So after the ultrasound we were brought in another room to meet with the doctor. She was kind and I cannot imagine having her job and having to deliver bad news on a regular basis. She started off explaining the problem with the kidney.  Baby girl does have multiple cysts in her left kidney that are full of fluid. They are causing the kidney to be enlarged which is causing her stomach to be distended. If this is all we are looking at, we'll have to monitor the amniotic fluid level every 1-2 weeks for the rest of this pregnancy.  The baby is making all the fluid so it is imperative for her kidney to produce urine in order to keep the fluid level up.  At this point, her fluid level is good.  There is a chance the kidney will continue to enlarge and crowd the other organs, which we will have to keep an eye on - I'll see the maternal fetal specialist every 3-4 weeks for the remainder of pregnancy to watch her kidney. Also, with the distended belly, there is a chance she will not fit down the birth canal and she'll need to be delivered via c-section. There is a way to drain the cysts while she is in utero before delivery, but that is a long ways away.  If I 'm remembering correctly, she said the likely diagnosis is multicystic dysplastic kidney (MCDK) which is a condition that results from the malformation of the kidney during fetal development.

The doctor then said there were other concerns we needed to talk about.  Until this point I had held it together, but I lost it. Sobbing as I listened to her describe the other things they saw on the ultrasound that are concerning.  So some of this is likely muddled as I wasn't exactly thinking clearly.  She has two choroid plexus cysts on her brain. She has ecogenic bowel. And the nuchal fold behind her neck is somewhat thickened.  These are all markers for a genetic/chromosomal abnormality.

I did have the nuchal translucency scan (NT scan) at the end of the first trimester and my results were good. I was not at an increased risk for Down Syndrome or another chromosomal abnormality.  The doctor said my risk was 1 in 10,000, but given the level 2 ultrasound, she said my risk is now 1 in 100 that baby girl has a genetic abnormality. I listened to all this through sobs. I remember feeling Todd's hands on my back. I couldn't believe that on our 7th wedding anniversary we were sitting in a high risk OB's office being told our first baby girl may have a very big problem. I was crushed. I am crushed.

I knew what was coming next. The doctor suggested I get an amniocentesis to know for sure. An amnio itself comes along with a 1% risk of miscarriage. But without hesitating I said yes. I need to know.  She said they could do it right then and we'd have the rapid results back by Friday and the full panel in 10-12 days. So through more tears, I said yes.

We were brought back to an ultrasound room. We were given the paper to read and sign that said the procedure involved a risk of losing the baby. I signed and handed the paper to the tech.  At this point I was numb. Was this really happening?  Yes, it was. I was living my nightmare.

The procedure was quick.  The tech did an ultrasound to find a pocket of fluid away from the baby. The doctor swabbed my belly down with iodine, I started sobbing and she inserted a long needle, that I watched go in on the TV screen in front of me. Todd held my hand and kissed my shoulder the whole time. The pressure from the needle was uncomfortable and caused a bit of cramping, but it wasn't as painful as I'd expected. It was very surreal. In an awful way.  The doctor pulled three vials of amniotic fluid, which is yellow just like urine. (In my head it was clear. Todd always thought it was red.  We learned something new It's odd what sticks in your head from a difficult situation.)  Within less than 5 minutes the procedure was over.  The tears seemed to dry up at that point and the rest of the appointment went by in a blur.

So now we wait to find out if this precious baby girl has a chromosomal abnormality, some of which I know are fatal. I'm trying to not go there, but it is hard to not consider the worst case scenario. I don't know what we'll do with the results and that scares me. I won't get into that more now because I'm trying to not let myself go there, but we are terrified of what may lay ahead. We are unsure how we will make the decisions that may be on the table later this week.  But we are hopeful and praying that she is perfect, with simply a side of a bum kidney.

Todd and I are both taking today off work again.  We go from being OK to being in tears within a short time frame.  We haven't told the boys any of this. We haven't even told them they're having a sister. It just seems too much right now.  Lukas is already asking daily if I feel the baby moving or if it has died.  Apparently a girl in his class has talked about how her mommy had a baby in her tummy but it died.  I pray that I can continue telling Lukas that I feel his sister moving every day for the next 4.5 months.  Because to tell him otherwise is unfathomable right now.

This has been the hardest week of my life. And it's not over and I realize it could get harder.  But I hope good news is waiting for us later this week. I hope that I can go out and buy this baby girl the biggest damn hair bow that I can find and I pray that she will wear it home from the hospital.  Because to feel her move, and to have carried her for this long, to not have her in my arms at the end is too much to bear.

Please send her prayers of health and strength.  And please send us prayers of peace and patience.  Please envision our girl in light and love and perfect health.  

We named her this morning.  

Bridget Starr Swanson.  

Bridget means strength. We know our girl is strong.  And the Starr girls (my mom's maiden name) are fighters.

Please keep her in your thoughts and prayers.

And to our baby girl, we love you.  So very, very much.