Skip to main content

Posts

Showing posts from April, 2018

4/10 Another Ultrasound

April 10, 2018 | 24 weeks Ultrasounds are supposed to be fun and exciting...something to look forward to. But after the first abnormal ultrasound and then a second the following week, I dreaded having another one, so I put it off for as long as my new OB was willing to allow me to. Things were feeling so "normal", though, that I really began to think maybe nothing was wrong anymore. I also began detecting baby's heartbeat in a different location on my belly, which made me wonder if maybe baby was moving around, which could only happen if baby's kidneys were working and producing amniotic fluid. I was feeling pretty hopeful, so I went ahead and scheduled another ultrasound. No good news, though. Everything looked the same. My amniotic fluid is officially zero, but baby has a steady heartbeat of 143 bpm. I don't quite understand how that's possible, but it looks like the Lord is not done with this child yet. Baby's other measurements still measured b

4/7 Sharing the News

April 7, 2018 | 23 1/2 weeks We shared the hard news with church, family, and close friends from the very beginning. At church, our news was shared on the prayer chain and from the pulpit, so everybody knew, which made it easy and wonderful to be there every Sunday. With extended family, I had sent out an email, asking for prayer after that first bad news. But is was much harder to share the news of fatal polycystic kidney disease, so after that diagnosis, I asked my sister and my dad to please update them. Close friends are close friends and they know everything, so it was easy to share with them. Church, Family, and Close Friends were covered, and life felt normal in these spheres. But there were so many people that I saw on a regular basis, mostly through homeschooling activities, that didn't fall into any of those 3 categories, and they had absolutely no idea what was going on. So I deliberately went into hiding. The kids and I were suddenly more prone to skipping classes a

3/30 Good Friday

March 30, 2018 | 22 weeks Ever since receiving the  diagnosis , I had death on the forefront of my mind. I made multiple phone calls to multiple places talking about and making preparations for death. Most of my texts and emails were centered around the fatal diagnosis and the imminent death. There were good and bad things about this. I was so focused on the impending death, that I often failed to celebrate the little life inside of me. I had to be very intentional about making sure I was bonding with baby and not feeling like I was merely carrying a burden. Having death on my mind that week leading up to Good Friday gave me just a glimpse of what our Savior endured for us when He willingly laid down His life for our sins on the cross. He asked, like I've asked so many times, “Father, if you are willing, remove this cup from me. Nevertheless, not my will, but Yours, be done.” Jesus knew He would be dealing with death soon. He was faced with death as I am faced with death. His b

3/21 Finding a Supportive OB

March 21, 2018 | 21 weeks I had a hard time making phone calls to insurance & doctors & the hospital. If I can't have the home birth I had planned on & I have to go the hospital route, I would like to just go to St. Jude, my local hospital. But first I needed to find an OB who would be supportive. One doctor already said he wouldn't take me as a patient because I'm too high risk. So that made me feel rejected on top of everything else. It's hard to make those phone calls and explain the situation over and over again, just to be rejected. I'm sad at what is going on with my baby, but at times, I get frustrated & even angry with my situation, and I take it out on whoever is around me, which 99% of the time is one of my poor kiddos :/ I prayed for a good supportive doctor to take me in. But then another doctor rejected me, too, and this one was a part of a whole suite of doctors, and the only remaining local doctors who deliver at my nearby hospital

3/19 Coping With the News

March 19, 2018 | 20 1/2 weeks I woke up the morning after that ultrasound , and didn't even feel pregnant anymore. I didn't bother to take my prenatal vitamins. I barely drank any water. What was the point anymore, I thought?  The grieving process had begun, and I just wanted to get this all over with and be on the other side. On the healing & moving-on-with-life side. From the way the doctor had talked about baby's condition and from the few case studies I had found, I thought it would be a matter of days, maybe a few weeks at most, before the full sting of death would hit, and in my heart and mind, I was living as if the baby was already dead. But it all felt so wrong. My baby is not dead, and maybe my baby won't die after all. Maybe the doctors are mistaken. Maybe God will choose to heal the baby. As long as there is a heartbeat, there is life, and there is hope.  King David was told that his baby would surely die. But his baby was born and even l

3/14 The Diagnosis: Polycystic Kidney Disease

March 14, 2018 | 20 weeks This was the day that we were scheduled to see the specialist. I dreamt about the appointment all night long. Dreamt that I would see more fluid. Dreamt that I would see my baby moving, wiggling, and doing somersaults inside my womb. But we didn't get any good news at the ultrasound. Everything looked the same as it did the previous week, maybe even a little bit worse. All the extra hydration & rest didn't do anything to help. Dr. Devore gave a diagnosis of polycystic kidney disease, which is something I came across in all the research I did, so it wasn't a complete shock. I learned that there were 2 types: Autosomal Dominant Polycystic Kidney Disease (ADPKD) and Autosomal Recessive Polycystic Kidney Disease (ARPKD). He said it was the ARPKD and the condition was fatal. The kidneys are enlarged and full of cysts, and they will only grow bigger and bigger, encroaching upon the other organs in baby's abdominal cavity. No blood is going

3/7 Worse Than I Thought

March 7, 2018 | 19 weeks I went ahead and (begrudgingly) scheduled my appointment with Dr. Devore for March 14. In the meantime, I was praying, hydrating (drinking 3L daily of my Trader Joe's alkaline-electrolyte water), resting, and researching. I came across AFI levels, low/high/normal, and I wanted to know what exactly my AFI level was. How "low" was my fluid. So my midwife sent me a copy of the ultrasound report. I was so discouraged by what I read...it was worse than I thought. - AFI: 4.5 (normal range is 8-18 & anything below 5 is labeled oligohydramnios) - Nuchal: 5mm (the higher end of "normal") - Spine: LTD (limited??) - Stomach: small - Bladder: not seen - Kidneys: both R+L enlarged, abnormal, echogenic (bright) - Heart: 4 chambers, BPM 138, fluid surrounding - Baby measured 10 days behind Enlarged kidneys, no bladder, extremely low amniotic fluid, fluid around the heart, and a nuchal fold marker. 5 abnormalities. I researched even m

3/5 The First Bad News

March 5, 2018 | 18 1/2 weeks In December, we discovered that we were expecting again, due Aug 2, but this did not carry the same joyful tune that it once did for us. After 6 uneventful pregnancies, giving us our 6 beautiful children, we experienced 2 losses last year. It was a really hard time for us. The pain and sorrow that I felt at the death of an unborn child was not at the same level as that of the death of a grown child, but still, I got a taste of that heartache. I know life goes on, and the loss of a child makes us more thankful for the ones that are here, but the memories linger and the pain resurfaces. It hurts, no matter how old the child is. Being pregnant again brought mixed feelings. Feelings of joy & excitement, of course, but so often in the early months, those feelings of joy were overshadowed by a feeling of uncertainty. I was so worried that this one would be a miscarriage, too. In my anxiousness, I developed a habit of checking for blood every time I went t