May 31, 2018 | 31 weeks
Our baby Mila was born today. 3 lb 1 oz and 14 3/4 inches of pure bliss. She stayed with us just long enough to meet her brothers and sisters, and then she breathed her last and went home to our Lord.
We had been looking forward to May 31 for weeks. I was impatient about it, even. It was the day that our second opinion was scheduled. I was eager to find out more information about our baby. Instead, I got to meet her face to face.
That night, as we were putting the kids down to bed, at 8:40 pm, I had a contraction. It wasn't too painful, but it was one that made me stop what I was doing and just lie down on the floor for a few seconds. An hour later, Aaron and I were downstairs, and I had another similar contraction. Aaron noticed that I had a far-away look in my eyes, and I suddenly felt the urge to pack our hospital bag. (And I still had that discharge going on, still only a little bit).
So we packed, and we called my dad to ask him to be on alert that night, just in case. My dad insisted on spending the night on our sofa, just in case. I also called the doctor's office and got connected to the doctor on call at the hospital & explained my situation and asked her if I should just pop in and be evaluated or wait until my perinatologist appointment the next day at 1 pm. I explained to her the entire situation, with the diagnosis of a fatal kidney disease, no amniotic fluid, my 2 contractions, my discharge, my history of extremely quick labors (our fourth & our sixth were each born about 35 minutes after I had one "big" contraction), and my history of preterm labor (our second was born at 32 1/2 weeks, and everyone else was between 37 & 39 weeks). She told me to stay home unless I had 6 contractions in an hour (even though I told her that I don't think I ever had that with any of my pregnancies). Something about this, the combination of contractions and the discharge, gave me a strange feeling, though, and a trip to the hospital was still on my mind.
I showered, and did not have a contraction another hour later, at 10:30 pm, so we went to bed. But at 11:30 pm, I had another one of those contractions. And then it was literally every hour, like clockwork that I had one of those contractions. I could feel it beginning in my tummy and going down to my tailbone. It didn't hurt that much, but it woke me from my sleep every time, and it made me wonder about that hospital every time. My contractions then began to get more severe. The ones at 2:30 and 3:30 am began in my tummy and went down into my pelvis, and I felt like I was being pried open. Poor Aaron barely got any sleep. I fell back asleep in between each one.
We arrived at the hospital just after 5 am, and I was hoping to be told that I was having a false alarm and that I should go back home. And then I could be back in time for my poor dad to go to work. I felt so bad inconveniencing him. He is always so helpful to us in whatever we need. I walked in to the hospital, explained my situation, and got put into a triage room. I was hooked up to a fetal heart monitor and a contractions monitor. I enjoyed listening to baby's heartbeat, and my plan seemed to work, because I did not have a contraction at 5:30 am.
I had a really sweet nurse, and she checked me for dilation at 5:45 am. I was at about 4 cm. So my fear/intuition was correct - I did open up and dilate! I felt like I had made the right decision to come to the hospital, because I was in labor and the stress of coming here stopped the labor. When the nurse checked me, she also got some of that discharge on her glove, and she was concerned about it.
I had only one contraction in the hospital, and it was at 6:20 am, and it wasn't that bad, so I was hoping to be sent home. The nurse then told me that they thought the discharge was either an infection or meconium (baby poop), which would imply that baby's water broke and baby was in distress. There was no way to tell whether or not my water broke, though, because I had no amniotic fluid to gush out. The nurse also explained that the hospital apparently has a 2-hour policy with maternity triage patients, which meant the nurse would not check me again until 2 hours had gone by. I was stuck here. I asked Aaron to go home for a bit, pick up a few more things, give my dad the van keys (I accidentally took them with me), and then come back.
After Aaron left, I had another contraction at 6:45 am, so that, coupled with the possibility that my water broke, made me so sad. I can't be in labor right now. I'm only 31 weeks. Baby needs more time. I need more time. I texted an army of people asking for prayer, and then I lay in bed and listened to Psalm 34 and sang along and cried and fell asleep until Aaron came back.
Comfort Care vs Intervention
At 7:30 am was the big hospital shift change. After that we finally met with a doctor, and she pressed us to make a very important decision. Would we choose comfort care or aggressive intervention? We needed to decide right then and there. Comfort care, or palliative care, or perinatal hospice, would be treasuring every moment with baby and allowing baby to live in comfort with Mommy and Daddy for however long baby lives. Intervention would be steroid injections for lung development, magnesium sulfate to stop labor, a C-section delivery, and the NICU team standing by at birth. We weren't ready to make that decision yet, and the whole reason we scheduled that second opinion was so that we could get more information in order to better make that decision.
Our nurse was so great, though. She arranged for the neonatologist to look over our baby's history and come speak with us. And there happened to be a perinatologist in the hospital that day, and she happened to be a partner of the one I was supposed to see later that day.
The neonatologist described what intervention would look like for our baby given the information he had. The first round would be basic oxygen and intubation for breathing. And then needles, a few of them, for draining the fluid around the heart and around the lungs. I was not aware that there was fluid around the lungs, too, or maybe I did hear the term "pleural effusion" in the doctor's office and thought it was the same as the pericardial effusion (the fluid around the heart). Then it would be dialysis and a transfer to the CHOC NICU, where baby would need to have surgery and more intense care. He didn't think the chances of survival, even with most aggressive measures, were very reassuring. In all raw honesty, it doesn't seem like baby has a reasonable chance to live, and I don't want baby's few hours alive being spent poked with needles and tubes. But I don't want to make that decision without seeing the lungs first, and seeing if there is any chance that they might be maturing.
We met with the perinatologist at 11 am. The techs were very kind, thorough, and knowledgeable. The doctor was as well.
Things did not look good for baby, though. The doctor agreed with the ARPKD diagnosis. One kidney was enlarged and the other was tiny, but both were echogenic (bright), indicating multiple cysts. This was my first time paying attention to baby's lungs on an ultrasound. The lungs were very small, and there was definitely a lot of fluid around them. Fluid was also still around the heart, and there was still no amniotic fluid. The doctor also told us that there was fluid buildup in the skin. Overall, she believed baby was showing signs of heart failure, and she thought comfort care would be best and that aggressive intervention would not help. Heart failure. Wow. I don't even know if baby will survive the birth.
Aaron and I agreed and settled on comfort care. I kept looking at it as "we're allowing baby to die" but Aaron reminded me that what we are actually doing is allowing baby to truly live. Baby would not be with us long, and we were giving baby the best life possible. A life of pure love and comfort.
It's amazing how the Lord worked things out, and we got our hopes fulfilled that even though we were stuck in the hospital, we still got our second opinion.
Well now I felt bad because I came here to stop labor, and it worked. I hadn't had a contraction in hours. But if I had known that baby's water broke, and that baby was in distress and showing signs of heart failure, then I would not have stopped labor. How is it going to start again? Do I go home? Do I need to be induced? A c-section? But that is ushering in baby's death, and I don't want to do that. So once again I felt helpless and stuck having to make these difficult decisions. I just wanted them to be made for me. I don't want the responsibility of making a bad decision, making a mistake.
As soon as I sat up from the ultrasound I had one of my contractions again. I received this one with gratitude. Thank you, Lord...this is supposed to be happening right now. Back in our room, I had another contraction. I lay in bed and tried to rest, and the contractions came back.
Labor had stalled just long enough for me to meet with the doctors and decide on palliative care, but then it started right back up again. God's mercy. When I was checked again, I was at 6cm. I was in labor and thankful.
I did manage to rest and doze off in between contractions, and I don't remember how far apart they were, maybe every 30 minutes or so, but by 3pm I had a few that were only 5-10 minutes apart, and I also had some more of those very painful opening contractions. I asked about pain medication every time the nurse came in, and I had her get my IV ready just in case. My options were epidural or a morphine-type thing in my IV. The IV meds would make me loopy and tired and would make baby tired, I was warned. The epidural would mean getting a catheter in the back and not being able to walk post-birth. I have birthed all 6 kids all naturally, but I am honestly such a wuss when it really comes down to it. It's not my strength that enabled me to move forward through each increasingly more painful contraction...it is a strength that can come only from the Lord. Thank you Lord, for that strength in weakness.
I was lying on my side trying to relax/sleep/breathe through my contractions, but they hurt so so bad. And I didn't have as much time of relief in between as I did in the previous hours. In a normal pregnancy and delivery, I would be able to handle this pain, knowing that my baby was coming, but this pregnancy had, on top of the intense physical pain, all the emotional pain we were dealing with. I wanted all of the pain, all of it, to go away. I was feeling desperate. I was already lying on my side...just stick the needle in me and let's get an epidural, I thought to myself. Or, maybe being loopy won't be as bad as I think. but I didn't want to do anything that would negatively affect baby.
Then my contractions got really bad. I couldn't tell what was happening to me, except that I was hurting in my body and in my heart and it was all so overwhelming, but the nurse calmly prepared the bed for delivery, checked me for dilation (no cervix, and she could feel baby's hips). Why is she feeling baby's hips? I thought baby was breech and would come feet first.
As soon as the doctor came and I had another one of those gigantic contractions, I pushed, and baby came out, (poopy) butt first, with feet tucked up by the abdomen. Another little push and the rest of baby was out. I felt the relief of baby exiting my birth canal, and I cried. I did it! I didn't think I could birth this baby. I had so many fears of baby getting stuck, and baby came out just fine. Aaron announced that we had a girl & they laid her on my chest, and I cried more. A daughter! And then we saw her move. She was alive! She was here with us. We were meeting her and she was meting us. I couldn't believe it, and I sobbed uncontrollably. Tears of relief, of joy, of love, of gratitude, of awe at such beauty that the Lord had orchestrated. It was an explosion of emotion. At 3:24 pm today, our daughter was born. Born. Alive.
We immediately began taking videos of her. We didn't know how much time we would have with her, and we wanted to remember every moment of her life in my arms. She waved her hand, gripped my thumb, wiggled on me, opened her eyes, and gave a little sniffle. Beautiful signs of life that we will cherish forever.
We named her Mila, the Romanian word for Mercy, because throughout all this pregnancy we have seen God's merciful hand over and over again. It could have been so much worse. Her middle name is Nova, which has a few meanings. Nova means New. This entire experience has been something entirely new to us. Nova is similar to the Latin word for 9. She is our 9th child, though only six others have made it to birth. Nova is the sudden appearance of a bright new star that slowly fades. Mila is our little fading star, our 9th child, someone new with a story unlike any of her other siblings'. We get a little glimmer of her, but we won't see her in her fullness.
My sister Gaby had been in and out of my room during labor. I asked the nurse to tell her to call my dad to bring the kids. I was really hoping Mila would stay with us long enough for her siblings to meet her, and she did! The nurse had just checked her heartbeat one more time, and Mila's heart was slowing down, but it was still beating. Aaron and I got to listen on the stethoscope. Right afterwards, the kids finally arrived. It was so good to see them all and be all together as a family, with Mila as a part of our family.
We took lots of pictures and videos, and everybody touched Mila's hands and feet and head. I was only wearing blankets, and Mila wasn't cleaned off, but it didn't matter at all. I was holding my precious daughter, alive. My little fighter. After all this time, we finally get to meet you, you persistent, resilient little one.
We had left the umbilical cord attached until it stopped pulsing, and it kept pulsing for well over 30 minutes after Mila was born. It meant I couldn't hold her up close to my face, but I think it also gave her more time with us.
Once I picked Mila up off of me to really take a look at her, I knew right away that we made the right decision to comfort care. Poor girl, she had no chance of surviving all the pokes and needles and tubes that were talked about. She was fearfully and wonderfully made, but she was also very smushed inside of me. Her cute little button nose was permanently pressed up to the right. Her feet were smushed, but it kind of gave her the perfect ballet pointe. She also had fluid around her face, giving her what Genesa adoringly called a double chin.
But she had beautiful, perfectly formed fingers and finger nails. A head full of velvety soft hair. Big eyes. She looked just like all the rest of our kids, but especially like Coco & Roman. I swaddled her up and wiped off her face, hands, and feet, and Aaron finally held her. Yes, I hogged her. The kids also took turns holding her. My dad and sister held her. Everybody who held her loved her. She was another daughter, another sister, another granddaughter, another niece.
We took more pictures and videos. The kids stayed for an hour, loved on their sister and then went home happy.
In the end, it really didn't matter what hat or blanket she was in. I didn't pay attention to the blanket, I paid attention only to her. Her face and hands and feet and head full of hair. She was here, alive, with us. And I could care less what blanket she was in, so I need not have stressed so much over it in our birth plan.
After everybody left Aaron and I were alone for the first time in a while, but we had no time to stop and process what just happened. We were fully aware of the ticking time bomb we had, and we needed to do some intense memory building. She breathed her last and went home to be with the Lord. We don't know exactly when, though. The nurse didn't check again until 6pm, but we knew she had breathed her last before then. Oh, I hope she could hear and feel just how much we loved her. I miss her so much already. It's too much to bear.
My sister had arranged for a photographer from NILMDTS to come and take photos of Mila. He was gentle, understanding, and respectful. Thank you to Now I Lay Me Down To Sleep for offering this beautiful service to bereaving parents.
The hospital chaplain came in to pray for us, and he talked to Aaron about how men tend to go into isolation when they grieve. Thankful for that insight. Something for me to think about for later. Grieving will look different for Aaron than it does for me.
The nurses were amazing at memory making. We made handprints, footprints, foot/hand imprints, and my favorite: a lifelike 3-D foot mold. I cleaned off Mila's body. I have never touched a dead body before, but this was my daughter's body, and I loved every inch of it. We took more videos. I wanted to know her features like I know all my other kids' unique features.
We got everything we wanted. Nothing got thrown away, not even the chart that showed her heart rate. We knew our time with Mila was coming to an end, and we had no regrets whatsoever with our time spent with her.
I showered and gave Aaron some alone time with her body.
I also pumped and it was comforting to see my body produce colostrum. This is what Mila would have eaten tonight. We will donate Mila's milk to another baby in need.
Time to Say Goodbye
Then the hardest part of all my life came. Time to say goodbye. We packed up all of our stuff. All of Mila's things were packed, too. The blanket she pooped on. The blanket that had blood on it. The prints and molds. A bag of some of her hair. The placenta. Her cord clamp. Everything.
I asked if I could take her down to the morgue myself, so the nurse wheeled me down. I sat in the wheelchair and held her soft head up to my face and wrapped her fingers tight around mine, and just nuzzled my face into her hair. And then it all came out. I'm not one to cry in front of people, so I closed my eyes and shut the entire world out. It was just me and my Mila, and I rubbed my face into her, held tight to those fingers, and wept as only a grieving mother could weep as they wheeled us all the way down to the morgue. Even when we stopped I refused to open my eyes and acknowledge the reality of what needed to happen next. Nobody said anything or pressured me into anything. Aaron stepped in and lovingly took our daughter out of my arms. because he knew I would give her to no one else but him. I got one last peek at her before the door closed, and the rest is left to memories. It was hard then. It is still hard now, to write it out and relive it and be wheeled down those hallways again and see that door close again.
We went home, hands empty but hearts full. We had no regrets. None of my fears happened. In fact, the thing I feared most (her being breech) turned out to be the biggest blessing. Had she been head down, I would not have seen the meconium that she was sending out as a signal that she was in distress and needed to be born. That little poopy butt of hers gave us a chance to meet her alive.
All this time, we were preparing for a still born or a full-term live birth with possible life-saving interventions, but what actually happened we never imagined. It was all perfectly orchestrated by our Sovereign Lord God. We were satisfied knowing that everything happened as it should have been, as best as it could have been. God was glorified through her life, and we were blessed to be a part of it.
Mila is our daughter, through and through, and I miss her like crazy right now.