A Little Life Inside

May 24, 2018 | 30 weeks I've learned what it means to comfort the grieving only by seeing what has comforted me, and what hasn't, in my own grieving. I've noticed that often times, people do not quite know how to compassionately interact with those grieving and they tend to operate at one of two extremes: either saying nothing at all or saying too much. Sadly, I myself have been at both ends. I used to try and think of just the right verse to send to someone in despair or I would try to be the hero and say the perfect thing. I wanted to be the one who said the right thing at the right time. In retrospect, what I really needed to do was listen to my friend, give her an opportunity to share her heart, and love on her and pray for her. On the opposite end of the spectrum, I have a friend whose baby, a twin, died at 4 months in his sleep. I thought it would be too painful for her to talk about, and I had no idea what the "right" thing to say was, so I simply didn&

May 17, 2018 | 29 weeks I had another appointment today. It was supposed to be a very short visit at 8:45 am with the nurse practitioner. Then she asked me if I had any questions. I thought for a moment that I would just wait to discuss all of this week's  new information with my actual OB at the next appointment, but when I opened my mouth to speak, everything just came rushing out. So I got another appointment squeezed in during the lunch hour. I had about 2 hours to kill, though. In the meantime, I did the 1-hr glucose test and walked over to the hospital to pre-register myself. It was my first time in almost 9 years stepping into a hospital while pregnant. I was in business mode, but as I sat down to fill out my paperwork, the reality of what I was doing suddenly hit me: I'm going to deliver a baby here, and that baby might die here. I'm going to walk down those maternity halls and deliver a baby and hear newborn baby cries all around me, but in my room, I will be

May 16, 2018 | 29 weeks I joined a Facebook group (ARPKD Angels) for parents who have had babies die from polycystic kidney disease, and it's been kind of a game changer. I'm finally in touch with other moms who have gone through the same thing. I asked them to share their stories with me, to give me an idea of what to possibly expect, and a lot of them made it all the way to full term & delivered live babies that survived anywhere from a few hours to a few days. A couple of moms even said their babies had kidney transplants & are still alive now and told me about another Facebook group (ARPKD) devoted to survivors of the disease. On that site, there are many stories of babies born with the disease, having their kidneys removed within the first 6 weeks of life, being put on medication and dialysis for 2 years or so, and then receiving a kidney transplant. From the way my perinatologist had originally given us the diagnosis , it seemed like death was imminent and t

May 14, 2018 | 28 1/2 weeks Aaron and I sat down to begin making a birth plan. At this point, it is mostly just a list of things we need to have with us at the hospital for the birth. But this is so different from our other birth plans. With our first-born, we didn't really know what we were doing anyway, so we didn't have much of a birth plan, and it didn't really matter. Our home was 2 miles away from the hospital, so Aaron was able to drive home and pick up whatever we may have forgotten. Our second baby didn't have much of a birth plan, because he came too early, but by our third, we had a hospital bag ready to go. Our fourth was born at a birth center, and we were well taken care of there. Our fifth and sixth were home births, so we had everything we needed right here under our own roof. This baby's birth will be completely unlike any of the others, though, which makes me feel a greater sense of urgency in creating a birth plan and making sure we thought

May 13, 2018 | 28 1/2 weeks This Mother's Day was a hard one. But I wasn't expecting it to be so tough. We had a great ultrasound and appointment on Tuesday, so I was looking forward to a pleasant week and a celebratory Mother's Day. However, we were hit with the stomach flu the day of my appointment, so I was on hyper alert all week. I also ended up having a lot of down time, because we canceled all of our plans for the week & quarantined ourselves at home. In my down time, I finished reading I Will Carry You  (a book in which a Christian woman shares her story of carrying a baby "incompatible with life"...and I think their diagnosis was even the same as ours: ARPKD ). Reading about the delivery, the death, the funeral, and the subsequent grief, made me imagine again the hard road ahead for us, and that, coupled with the disappointment of the stomach flu, just put me in a somber mood. And I also suddenly felt an urgency to make sure we were prepared fo

May 8, 2018 | 28 weeks I had a great ultrasound and appointment this morning. This is now my 4th ultrasound with this pregnancy. The first ultrasound was disappointing, because we were not expecting that bad news. The second ultrasound was just sad, because the bad news was confirmed. The third ultrasound was hard, because I was hoping for some good news but instead received the same hard news. With each of these previous ultrasounds, I went in very "hopeful" & then experienced the disappointment of the painful reality we're facing, which threw us in a funk for the first few days afterwards. This ultrasound was not great because of the news we received, but simply because of the way it went. I went in hoping to just bond with baby. I realize these ultrasounds may be our only chance to see baby alive, and I want to cherish them. So with that in mind, it was a great ultrasound. Everything I hoped and prayed it would be. Aaron came with me, and I explained to the

May 6, 2018 | 27 1/2 weeks Since I'm now coming up into my 3rd trimester, I need to start realistically thinking about the birth, but that involves making some difficult decisions. Do we induce birth and have a chance to see baby alive or do we wait it out and allow the baby to die in the womb? It's a battle between what I selfishly want and what I selflessly know would be best for baby. I want to hold a warm baby, alive and breathing. I want to smell the baby. I want to kiss baby's soft cheeks and wrap baby's tiny fingers around my own. I want to see baby's eyes open and close. I want to whisper into baby's ears just how much Mommy loves him/her. I want to hear baby breathing and feel baby wriggling. But all of this means that I am asking to have a baby slowly die in my arms second by second. What would be best for baby? Wouldn't it be better if baby never knew the harshness of sin in this world and was able to go from womb to glory? From the ultimate e

May 2, 2018 | 27 weeks From the way that perinatologist talked about my baby's kidney disease , I honestly did not think I would make it through the month of March, let alone April, and still be pregnant. But here we are in May, and I'm still pregnant. I'm 27 weeks along, entering into my 3rd trimester. I remember, with every other baby of mine, what a milestone this was. The 3rd Trimester. The Home Stretch. Almost there! What feelings of joy & relief would normally accompany this news. But this pregnancy is not normal, and instead of feeling that hopeful expectation, I just feel a little stunned right now. We're far enough away from that initial diagnosis, and still far enough away from my due date (Aug 2), that this all kind of feels surreal right now. Is this really going to happen? Is this baby really going to die? We've been so filled with joy these last few days, and everything has been so peaceful. Calm before the storm, maybe, but we have been enjo

April 28, 2018 | 26 weeks We had a genuinely joy-filled week this week, and I am thankful for that. At first, though, feelings of guilt tried to creep in. Thoughts of  "Why am I happy right now? My baby is still sick. I should be sad." I'm learning that in this torturous tension between life and death, that there is also a delicate balance between joy & sorrow. 2 Corinthians 6:10 speaks of being "sorrowful, yet always rejoicing", and that is precisely the feeling right now. This is, by far, the saddest season the Lord has ever brought me into in life. Being told that my unborn baby will most certainly die is the heaviest news I have ever received. Sometimes I feel like I should be perpetually sad until this is all over. But then when will it ever truly be over? The grieving will come full-force if/once baby actually dies, and then I know that pain will remain with me for the rest of my life. Weeping may remain for a night, but joy comes in the morn

April 26, 2018 | 26 weeks After this week's scare , I started thinking (worrying) some more about my pregnancy, delivery and the possible complications. I had my second appointment with my new OB today and went over some of these medical fears with her.  The Delivery I'm very afraid of the delivery, especially if I make it full-term. I have only ever had normal deliveries, and there is nothing normal about this one. Baby is in breech position, so I'm already afraid of baby getting stuck. Because of the enlarged kidneys, baby's abdomen is disproportionately large, which makes me even more afraid of baby getting stuck in the birth canal and me needing an emergency c-section or something. I even read one mom express fears of baby getting stuck and not coming out in one piece, so now I'm horrified at that possibility, too. The doctor, first of all, assured me that the possibility of baby not coming out in one piece is extremely low. And then she basically reminded

April 25, 2018 | 26 weeks I began documenting our story in this blog, and today I shared it online with friends and family. I share in hopes of supporting others going through the same thing. This is the kind of information I was hoping to find online & it's not really out there. I found bits & pieces in various forums, but I had such a hard time finding complete stories online, especially since so many women are pressured to terminate, that I wanted to share my story here, to give other infantile polycystic kidney disease moms an idea of what lies ahead. I share because I have felt so comforted when others shared with me. I just had another mom from church over. She had 2 babies in a row (her first 2 pregnancies, actually) with another genetic disease & each died at around 22-24 weeks along. She shared her story with me and then also invited me to read her online journal which chronicled everything from start to finish. It was really comforting to hear her talk a

April 24, 2018 | 26 weeks I didn't check baby's heartbeat yesterday, because I thought I finally felt some wiggling and kicking. I'm thankful for those signs of life. I checked this afternoon, though, and I don't know if it was just the time of day or the position I was in or what, but I had trouble finding a heartbeat & when I did, it was a little slower than the usual 143 bpm we've been hearing. I didn't think I would still be pregnant at 26 weeks, but here I am & here baby is, and I was just getting used to the idea of baby being around for a little while longer. We've got a new normal going, listening to the heartbeat every day. It's our way of checking in on baby and baby's way of saying hello. I was prepared to keep that going for at least a few more weeks. I'm actually a little scared right now. Nervous, Worried. I'm not even sure what the right word to use is. Panicked? I'm not ready to walk that road yet. I'm

April 22, 2018 | 25 weeks I went to church this morning feeling pretty strong. It was forecasted to be a beautiful sunny day, and we made plans to go to the beach afterwards. Enough time had passed since the most recent ultrasound, that life was back to feeling normal again. Overall, I feel like I'm doing great, given the circumstances. The Lord has brought me to a place of acceptance with all that is going on with baby. But there are still moments when the pain & sorrow strike suddenly without notice. And it surprises me, because I generally feel pretty strong, but the Lord shows me my weakness in those times to remind me to trust in Him and not in my own strength. In church today I saw another mom, a dear friend, with her newborn baby in a baby wrap. I had a quick flashback to all the times where I was the one walking in with my adorable baby in a baby wrap. Then I thought of how, this time, my arms will be empty, my stroller will be empty, my baby wraps and carriers wi

4/16/18 | 24 1/2 weeks The first few days after an ultrasound  are always hard. It's hard to look at enlarged kidneys, fluid around the heart. and no amniotic fluid. It's hard to accept that that's my baby up there on the screen. It's hard not to imagine that my baby might be suffering inside of me. It's hard not to wonder why. And then all sorts of other thoughts creep in. Should I have stuck to my original resolution & quit trying to have kids after those 2 miscarriages? Did I bring this upon myself because I was being stubborn? Aaron was ready to be done at 6 kids. Was it the sandwich meat I ate during early pregnancy? Was it the Wi-Fi radiating in our home 24/7? I know it wasn't alcohol & it wasn't a lack of rest. I essentially bed rested myself those first few weeks. Does God not like me anymore? Am I out of His favor? Is there sin in my life I'm not addressing? I read these things that I've just written & they look l