Finally Just GOOD News

We had our third and what should be last ultrasound this pregnancy.  This time I finally got to hear just good news, no ifs . . . ands . . . or buts.  One of baby's kidneys remained slightly enlarged but the other and bladder looked normal today as did everything else with baby.   My placenta, cervix, amniotic fluid and baby's measurements were all great.  Baby even measured at 27 weeks and I'm only 26 weeks which is actually 25 weeks since my doc bumped up my due date by a week based on prior ultrasound measurements!  Considering that our last little girl was a whopping 8lb 14oz at 39 weeks I'm a little anxious about this baby's potential size.  But oh, so thankful to have that be one of my only remaining "worries".

I cannot put into words the relief that has flooded through my veins since hearing those words. I now feel ready to move forward, to not only visualize a little girl sleeping right next to my bed, but ready to eventually put up a co-sleeper for her to sleep in.  Emotional detachment was my primary coping mechanism after Eli's Potter's diagnosis and I have noticed that to a lesser extent I have utilized that same mechanism lately.  I look forward to letting my whole heart fill with love for this little one growing within and now can truly begin counting the days until her arrival into our family's hearts and home.

Waiting

I have not shared much about this pregnancy because I have been in an almost constant state of waiting. For the first fifteen weeks I waited for pictures of kidneys, amniotic fluid and a bladder. Then when that ultrasound came, the radiologist could not confirm existence of kidneys (even though my husband and I were confident after seeing so many prior ultrasounds that they were there) so we had to wait for the next ultrasound to confirm the existence of these oh-so-important organs. That ultrasound came and then we were told that this little girl has slightly enlarged kidneys and bladder so now we are again waiting for another ultrasound to tell us something that will hopefully end our waiting.

I am now about 25 weeks but I find myself just stuck in this waiting cycle. I am waiting for a good reason to believe this little girl will cross our home's threshold before getting any baby things ready. I am waiting for that same reason before contacting the church to discuss our daughter's baptism. Even though enlarged kidneys and bladder are not even in the same ballpark as missing kidneys and bladder I am just waiting for more - more something to end that waiting.

I am tired of waiting. Waiting for babies to die. Waiting for babies to live. Waiting to see what happens.

I Can Now Partially Exhale

All week I have been holding my breath waiting for this morning to pass. This morning our two youngest daughters had ultrasounds of their kidneys and bladders. It is a necessary piece of this puzzle for us in the hopes of finding some answers as to why two of our children have not developed kidneys. We have to make sure that all of the rest of us have kidneys and then whether those kidneys are normal and functioning. I had mine scanned at our level two ultrasound in December and verified there are two non-remarkable kidneys inside of me, sadly, there should be four right now. Our oldest has had hers scanned before related to a urinary tract infection and urine reflux condition which was subsequently discovered so we have verified that she has two. So, then it was just my husband and two littlest ones to go. Today was the girls' day. I exhaled (partially) when I was able to verify that each girl does indeed have two kidneys and I will save the rest of that breath until we can confirm that they are normal looking and functioning kidneys. I thank God for letting those kidneys be there today.

Hearing the News a Second Time

I picked my husband up from work and we drove the rest of the way to the appointment together.  I asked him what he thought about the ultrasound and again told him that I thought something was really wrong.  I explained how I didn't see amniotic fluid, kidneys or bladder and that I had compared these pictures with the other children's.  He lied to me and told me he thought everything was fine.  Usually when my husband tells me everything will be fine I have one of two reactions: anger at his minimizing the situation or I find it comforting and allow myself to let go of whatever is distressing me.  This time it was like I barely heard his words.  All I could do was pray that everything was okay over and over.  I know why he lied and he knows that I know, that's all that matters.

I knew from the minute my doctor walked into the room that the news was not good.  It was written all over her face.  She said that the radiology report was nearly identical with Wyatt's.  No amniotic fluid, no kidneys, no bladder.  The only difference was the absence of the sacs they had seen on Wyatt's spine.  This baby was perfectly normal, minus those important little organs.  The baby even measured right on track at 19 weeks.  My doctor was very caring as she again explained our options and the increased risks involved with each option for me this time considering my prior history of four c-sections.  Because of the time I already had to process the news one of my biggest concerns was preserving my uterus as much as possible so that I could try to have another baby.  There was no question that our decision would be to carry this baby to term just as we had done with Wyatt and she anticipated as much.

I cannot say enough kind things about the compassion that my doctor has showed me throughout this whole journey, and that day was no exception.  She hugged me and cried alongside me as I sobbed for the baby, myself, my husband and our family.  This was the first blow of many.  Now we would have to again tell our family and friends and perhaps most importantly, our children.  That was the most difficult part for me.  I could process this news, I had been down this path before, I knew what to do and when to do it.  Knowledge empowered me.  But it left me speechless when I contemplated what to do with our children at home.

We decided to tell them that evening.  Mommy & Daddy explained that the baby in Mommy's tummy was missing some parts and would die, most likely after it was born.  We explained that Mommy was okay and that baby was okay for now and that hopefully we would get to watch him/her grow bigger and stronger in Mommy's tummy.  But that when the baby was born it would not get to come home with us.  Mommy & Daddy are sad and will be sad for a long time and that it's okay for them to be sad too and for them to talk with us about how they feel.  Our oldest, about 6 1/2, really understood.  She said she felt very sad for the baby and desperately wants Mommy to have another baby.  It's heartbreaking to feel this loss from her perspective.  We felt it was necessary for them to have the knowledge that Mommy isn't going to be normal Mommy sometimes, that she may cry, she may get angry for no reason and that I may have to go to the hospital earlier than planned.

That evening it occurred to me that I had again not purchased one item for this baby.  My husband bought a new carseat but I hadn't wanted to purchase one yet and really wasn't too interested.  It was like I knew that we wouldn't need it again.

The Second Leg of my Journey

One more child.  It was a much desired and planned pregnancy.  My first trimester was relatively mild, but any drain on my energy and even a mild sickness is amplified when I'm caring for three children under the age of seven!  I determined that this would indeed be our last child.  I no longer had the desire to be pregnant or to go through another c-section.  It seemed so simple.

As I entered the second trimester I was so eager to feel my baby move.  I had felt the girls all move very early, between 13-15 weeks, and I just couldn't wait to feel this little one.  I know I commented more than once about not feeling those kicks.  I surmised that my placenta was probably in the way and blocking them.  I knew the baby was okay because I had been listening to it daily with a fetal doppler (we've done so with each pregnancy since Wyatt). Finally, I started feeling little movements here and there and they were mostly reassuring that things were okay.

However, as we approached the 19 week ultrasound I became very uneasy.  The lack of regular strong kicks, feeling not very big for my 5th pregnancy and just intuition I guess left me uncomfortable.  I also was struggling with not "connecting" with this baby and could not understand why.  I clearly remember taking a walk with my husband and girls the night before our ultrasound, just 5 weeks ago.  I told my husband that I had a bad feeling, that something was wrong with the baby or the pregnancy but I didn't know what it was.  My best guess and fear at the time was placenta previa.  Perhaps my subconscious prevented me from connecting the dots or my memories had faded enough to spare me the pain.

We decided to take our youngest two to the ultrasound early the next morning.  I was so excited for them to see their baby sister or brother.  However, I began worrying right away when they started.  The screen was annoyingly turned away from me so I couldn't see.  But when they turned it toward me things just didn't look right.  Of course, neither of the techs said anything about low amniotic fluid, missing bladder or kidneys.  But, this was my fifth ultrasound and I knew by now what I was looking for and that I did not see those things.  The baby was beautiful and bashful, so we were unable to find out the gender.  I hadn't wanted to know, but my husband did and we had planned on him finding out.  The baby just wasn't moving much and had its precious little privates well concealed that day.

I took the ultrasound photos and my two girls home.  Despite an urgent need to empty my bladder I tore open each of our children's baby books and frantically dug out ultrasound photos.  I knew in a second that this baby had Potter's Syndrome too.  The lack of fluid was unmistakable.  It's literally the difference between grey and black.  I sat at our dining room table and burst into uncontrollable sobs for the little life in my belly and for our family and what we would lose again.  There was so much more to process this time, this time we knew all about Potter's, we knew how the pregnancy would likely go and how it would likely end but now I had three innocent children who I could not protect from the pain of losing this child.  When my mascara  was gone I went to the bathroom and cleaned up without saying a word.

Later that afternoon when my mother-in-law came to watch our girls while we met with my OB/GYN, I said nothing when she asked how it went.  I showed her the ultrasound pictures as happily as I could, got in the car and prepared to hear some of the most awful words any person could ever utter, that my child would die, again.

Where my journey began

My journey began eight years ago.  I had just begun married my best friend and started in a career I had worked for since childhood.  We decided it was a perfect time to start our family.  I became pregnant quickly with the first grandchild in our family.  It was an exciting time for all of us and I reveled in the joy of pregnancy and impending motherhood.  I also learned the morning sickness was a great misnomer as I felt sick all day long!  The sickness eventually passed and my stomach began to swell.  Maternity clothes were purchased and my ultrasound was scheduled.  We were thrilled to see the baby, our baby, on the screen.  The technician took great care in examining every inch of our baby. We left the ultrasound department that day with an unsettled feeling but at that time we had no reason to believe anything was wrong.  When we met with my doctor we were told there were some problems with the baby.  The kidneys could not be visualized, nor could the bladder and I had little to no amniotic fluid.  They also saw what appeared to be fluid sacs at the baby's neck and base of its spine.  We were told there were a few possibilities, but neither was compatible with life. Our child either had Trisomy 13 or 18 or Potter's Syndrome.  In our case, it would be Bilateral Renal Angenesis (BRA). Without kidneys, which produce amniotic fluid, the baby's lungs would not develop properly and the baby could not survive outside the womb.  Adding insult to injury, we were told that the baby could die at any time in utero.

The pain I felt at that moment was breathtaking.  Talk about being blindsided.  I had no idea such a condition existed and my faith in modern medicine was such that almost anything could be fixed.  It was beyond devastating to hear those words.  We were given a choice and time to consider it, early termination of the pregnancy or carry the baby as long as possible.  We went home and called our families.  My husband actually did, I could not say those words.  I remember how he cried and hoped to never hear that sorrow from him again.  He carried me that evening.  Next we researched and found little, but enough to confirm what the doctors had told us.  Despite this, I prayed for healing and I clung to hope for our baby.  It was a difficult weekend to pass.

A follow up appointment with a higher level ultrasound was scheduled and that ultrasound confirmed the earlier findings.  We met with a genetic counselor to determine if there was some genetic predisposition that could be ascertained through family history.  There was nothing.  I remember that appointment well, it was on the anniversary of Roe v. Wade, I believe the 30th anniversary.  I know this because it was on the news that evening.  I remember going to Baker's Square for dinner that night and having pie for dessert.  It was also the very first time I felt my baby kick.  We then decided that I would carry the baby as long as possible and that his or her life would be taken by a power higher than ours.  My job was to give the baby life and our job was to prepare to say goodbye when that life ended.

It was at that point I realized I had not purchased one item for my baby yet.  Five months and nothing, I now look on it as a mother's sense that something was not right.