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.