Oliver Scott – Born to Heaven

It has been the longest month of my life. It was a month ago that we found out my AFP tests came back abnormal. In that time, I’ve had multiple ultrasounds, two amniocentesis tests, my baby’s diagnosis of Spina Bifida, a skeptical doctor who didn’t believe the first Triploidy results, a lot of false hope, disappointing news after disappointing news, a final diagnosis of Triploidy, preeclampsia with high blood pressure and a lot of swelling, and the heavy decision to deliver our baby early. This month has been heartbreaking, unfair, and wonderful at the same time. I was able to be pregnant for the last time ever, and feel my little baby move and kick around. I got to meet my angel baby, become closer to my husband, and feel loved and supported by so many people – even strangers. This past month has me feeling so confused and empty, yet full.

Last Thursday (July 28th, 2016), we made our way to the hospital and checked in just a little before 8:00 p.m. for me to be induced. Upon checking in, the nurse at the desk didn’t realize what was going on, so she jokingly said something along the lines of “You’re not big enough to be induced! Turn and let me see your profile!” Fighting back tears, I told her that I was not full term. She apologized several times, and offered her condolences, but this set off a wave of emotions in both of us. The nurse walked us to the room where I would deliver my baby, handed me a gown, and left. I immediately started crying. I’ve been in these rooms before – twice, with each of my living children. This room was meant for happiness and joy, and all I felt was sadness and guilt. Up until this point, I could still feel little Oliver kicking and doing somersaults in my belly. I got dressed in the awful gown they gave me, and waited for my nurse to arrive. The first nurse assigned to me was wonderful, and she was accompanied by a friend of a friend who vowed to take great care of me. She spent several minutes trying to find a vein in my arm so that I didn’t have to have the IV in my hand (bad past experiences with this). Shortly after this (about 9:00 p.m.), the midwife came in to talk to us and administer the first dose of Cytotec to induce labor. Thus began a very long 14 hours.

About 20 minutes after administering the Cytotec, I began to shake uncontrollably. This was one of the most miserable experiences. I spent about 45 minutes with horrible chills until John finally couldn’t take seeing me like that anymore and called the nurse. Chills is a usual side effect of Cytotec, but not a fever – which I had developed and kept until after Oliver was born. Between 9:30 p.m. until about 8:00 a.m. I received many different medications for my fever and the pain of the contractions that seemed to never stop. Overnight, I got minutes of sleep at a time, while my husband snored away…Lol. My goal was to make it to 7:00 a.m. (breakfast time), so that I could eat before getting an epidural. Breakfast took forever to get to my room. After eating, my contractions became worse, breaking through the heavy pain meds that had been administered. I finally gave in around 10:00 a.m. and said that I wanted an epidural.

It took the anesthesiologist about 30 minutes to make it to my room. When he finally arrived, he said “Congratulations!” The nurse gave him a look, and quietly said that we were losing our baby. He offered condolences, and then got to work. At this point, my fever had spiked to 103.2, and I was again shaking uncontrollably. Talk about nervous! This guy was going to try to stick a needle in my back while I was shaking like crazy! He insisted he could work around my shaking. After THREE tries, he claimed that he got the epidural in, and it should be working. Before lying down, I felt a big pop, almost like Oliver just jumped up and down in my stomach. My water had broken. The anesthesiologist finished taping things, and I stopped feeling my contractions. However, I could feel everything else…I knew immediately that my epidural hadn’t really taken, which scared me to death because I had always had strong epidurals with my other kids. The kind that make you COMPLETELY numb from the stomach down. But, I went to lie down anyway because I started feeling pressure and knew that I would have my sweet baby soon.

My midwife immediately checked on the baby, and started prepping to deliver – it was time. I was still shaking uncontrollably, and now I started feeling all of the emotions that had been numbed by pain meds over the last 12 hours or so. It took about one push and little Oliver was introduced to the world. The midwife didn’t place him on my stomach right away. She checked for a heartbeat – he didn’t have one. She offered to perform palpitations, but we refused, knowing that if his heart miraculously started beating, it wouldn’t last for long. He was already in the arms of Heaven, and we wanted to keep it that way.

She placed him on my stomach and we both started crying, telling his lifeless body just how perfect he was and how we were sorry he couldn’t stay here on Earth with us. He was so tiny, but looked so much more like a human than an alien (something I had been very anxious about). His head had turned reddish-purple, his body was very red, and his legs were of normal color. Due to this coloration, I think he passed soon after meds were administered the night before. I hadn’t felt him move since about midnight. He had Makenna’s nose, John’s ears and hands, my and Bryson’s chin, and his small amount of hair looked strawberry-blonde in color. His body came into this world at 11:07 a.m. on July 29th, 2016. He weighed 15.2 ounces and was 8.5 inches long (although I don’t think that the nurse stretched his legs out all the way when measuring).

We spent hours with his lifeless body, inspecting every inch of him. We saw the Spina Bifida “bubble” on his back, his little clubbed feet (a common trait of SB babies), and some other, very small, abnormalities that indicated his Triploidy (head size and shape, one of his ears was slightly under-formed, and his boy parts were not developed all the way). But, he was absolutely perfect to us. After a couple hours of holding him, John’s parents and my mom came to visit, and the hospital’s photographer came in to take photos. Around 3:00, Oliver’s body began to stiffen, feel very cold, and his skin started to deteriorate, so we called the funeral home to come pick him up so that he could be cremated. Handing his body to the nurse was one of the most difficult things I’ve ever had to do.

After about two hours of resting in the hospital room, waiting for my fever to subside, the midwife came in to discharge me. I was glad to be going home to sleep in my own bed, but so sad that it was all over. My baby was no longer inside of my stomach, and I didn’t get to bring him home with me. We had the blanket that we snuggled him in cremated with him, but I now wish we hadn’t because that could have been the only thing I kept that his body touched. I’m sure that sounds silly, but I want nothing more than to hold him again, even with his still heart. We ordered a sweet urn that’s shaped as an angel comforting a baby. Today we go to have it filled with his ashes. Today we will bring home what is left of our sweet Oliver Scott.

Physically, a week later, I am feeling much better. I still get tired quickly, but the pains I was feeling a few days after birth have subsided. Emotionally, the pain comes in waves. Usually something will remind me of him or my pregnancy, and the tears start flowing. I know it’ll take some time to feel “normal” again – or at least get a sense of what the new “normal” feels like. I wanted so badly to have a third child – and now I can say that I do. Some of you may not know this, but Oliver was my fifth pregnancy. I had an early miscarriage just months after Makenna (our oldest at 6 years old) was born, and another early miscarriage this past November. Through Oliver, John and I now agree that our family is complete. As much as I still long to cradle, take care of, and raise a new baby, those days are officially over for us. We can now put our time and energy into the two lively children we have to enjoy on Earth.

I am truly so very thankful for all of the support, prayers, donations, meals, and friends that have come from Oliver’s sweet story. Although we have lost a child on Earth, Heaven gained a sweet baby boy. It has made my marriage stronger, made me appreciate the little things that Makenna and Bryson do every day, made me realize that I have so many more friends than I ever imagined, reassured me that God has us at the perfect church for our family, and that I am not alone in this. I am not the only one who has suffered the loss of a child. Many stories similar to mine have been shared with me over the last few weeks, and they have brought comfort to my soul. I hope that one day I can do the same for someone else.

~April

It’s been one of those days…

My maternal fetal doctor called today and told us that results from the second amniocentesis confirm that Oliver has Triploidy. With Triploidy, there is no chance for survival, and Oliver will die either within the womb, or shortly after birth. However, my doctor is concerned because I am developing preeclampsia. At times it is difficult for me to breathe because my pulse and blood pressure are high. I typically have LOW blood pressure – it was at or below 90/50 earlier in my pregnancy. I’ve also started getting pains in my left kidney – which can be another indicator of preeclampsia. Therefore, my doctor is scheduling me for an early induction later this week. That day will probably be one of the most difficult days or our lives, but we will get to see our sweet baby boy, and will cherish the short time we will get with him.

Today’s news was really getting to me… Every time I walked into a room of our house, I was reminded in some way that I’m going to lose him. So, we asked my parents if they could come over and help us remove all of the baby items from the house. We had clothes and smaller things stacked up on our sunroom’s bookshelves, a changing table in our bedroom, clothes in our dresser, and tons of stuff in the garage and laundry room. It was heartbreaking to see all of the baby stuff leave the house, but I really feel like we needed to make that step so that when we return from the hospital we can start healing emotionally. We will be going through all of the items when we are emotionally stable enough to do so, and will be donating most of it.

Today we also talked to the kids. This was very very difficult… They know that Oliver is very sick, and will be going to Heaven this week. I promised that they would be able to say their goodbyes before we go to the hospital, and that we would take pictures of him and will hopefully have a tiny urn with his ashes. We also reminded them that Oliver will always be their brother, even while he’s in Heaven.

I will update everyone when we find out which day this week that we will be going to the hospital. Thank you SO SO much for those of you who continue to make donations toward our fundraiser page. John and I are missing a lot of work through all of this, and will have quite a few medical bills in the end. So THANK YOU from the bottom of our hearts – it means the world to us. Also, thank you to those who have offered to help out by bringing food over or watching the kids for us. John can’t cook (sorry John…) and it’s been hard for me to get out of bed most days…so food helps A LOT 🙂

Please continue to pray that we have strength through these times. We have to remind ourselves daily that God is not doing this to us, but that He will get us through this.

~April

Not What We’d Hoped For, But God Has A Plan

God has a plan. It is so unclear to me what that plan is right now, and I may never truly know what it is…but He has one – even through all of this heartache.

Today has been another emotional roller coaster. We started the day at my regular OB’s office for a routine prenatal appointment. There had been no communication between his office and our maternal fetal doctor’s office, so we had to explain to him everything that has been going on with the Spina Bifida diagnosis and the preliminary amniocentesis results (check yesterday’s blog post for more info). It was hard, but we made it through talking to someone about it. It was also discussed that I have early signs of preeclampsia due to high blood pressure, migraines, light-headedness, and protein in my urine. When talking to my OB about last week’s ultrasound and the inconsistencies with my blood genetic testing results when compared to the amnio, he seemed as confused as my maternal fetal doctor was with the preliminary results of Triploidy. This gave us a little bit of hope…

We left my OB’s office and went home for a bit. Then we decided to grab some lunch. Immediately after we placed our order I went to the restroom and missed a call from our maternal fetal doctor! Of course, of all times to call…I called him back immediately. He said that the final results from the amniocentesis came in and confirmed that Oliver has Triploidy. However, he and the genetic counselor were still in disbelief of this, since there were no other signs of it at my ultrasound last week. He asked if we could come in for another amniocentesis test (ugh…another big needle stuck in my stomach…) RIGHT THEN. We got our food to go and made our way to his office immediately. This time around we were WAY more nervous about walking into that office. I was excited to see Oliver on the ultrasound machine again, but was a little scared of what we might find. When the doctor, ultrasound tech, another doctor, a nurse, and John and I all looked at the ultrasound, some small things started to catch our attention:

  1. His head had only grown by 3 days in the last 9 days.
  2. His abdomen was now measuring 2 days ahead.
  3. The placenta looked just a little larger than it should have.
  4. One of the ventricles in his brain looked a bit larger than the other.
  5. His “potty shot” had us questioning that he is a boy (underdeveloped genitalia).

All of these things were not seen last week, which is why the doctor has been questioning the Triploidy diagnosis. However, after looking more closely at the ultrasound he felt more confident that it is Triploidy. He said that he has never seen a case like ours, with so few abnormalities – and that he will now highly recommend an amniocentesis test to anyone who has a baby with a neural tube defect (like Spina Bifida). Even though the doctor felt more confident now that it is Triploidy, he still wanted to perform a second amnio just to be sure. He said that if the rapid test (which we should get back on Monday or Tuesday) comes back as Triploidy, we can believe that it is 100% true.

Our family is so torn apart emotionally right now. This is THE hardest thing we have ever gone through, and it’s only going to get more difficult. Since Oliver’s abnormalities are becoming more evident, they are putting more of a strain on his body, and he has been moving less and less every day. Everything is also starting to put me at health risks, especially since I am developing early-onset preeclampsia, which can cause long-term health effects and is very dangerous, and I have been having contractions for the past few days. All things considered, my doctor has recommended that labor be induced next week.

Please keep us lifted up in prayer. We have a rough road ahead of us, and need to trust God more than ever right now.

*Side note*: With these new developments, I have cancelled our consultation at Vanderbilt for next week. We greatly appreciate all of the donations we received toward the surgery costs, but would like to refund any monies given, as the circumstances have changed. We will be changing the name and description of the fundraiser to “Parmer Medical Expenses”. Please contact me via the Contact page on this blog if you made a donation, so that I can arrange a refund for you.

~April

When Your World Starts Crashing Down…

I posted an update on Monday that we have a consultation with Vanderbilt next week to discuss fetal surgery. Monday was a GREAT day, full of excitement. Tuesday morning I woke up early, made coffee (which is rare for me these days), almost narrowed down our hotel in Nashville, and starting prepping everything for the trip (cleaning, organizing, list-making, etc). Then, at 10:00 AM, I got a phone call from my high-risk doctor. Everything is changing.

First of all, why is the doctor calling me with test results? Usually it is the nurse…so I was already a bit worried. My doctor told me that he received some *PRELIMINARY*/Rapid Test results from the amniocentesis they performed last Tuesday. He described the results as “puzzling” because the same results did not show up in the blood genetic tests from the first trimester, and there were no indications of these results on the (extensive) ultrasound they performed last week. The Rapid Test results indicate that Oliver has three sets of chromosomes instead of two – it is called Triploidy. He told me not to worry yet, since these were the preliminary results and he didn’t see any evidence elsewhere that this is the case. But after looking at these preliminary tests, they are typically 98% accurate.

Triploidy is a very rare chromosomal condition that is fatal to the baby. Usually there are multiple markers – typically a small or large head, small abdomen, severe birth defects (including Spina Bifida), organ deformities, etc…but all our doctor saw was the Spina Bifida. Triploidy babies usually die during the first trimester. Those that survive past the first trimester usually do not make it to full-term. For the few who do survive birth, these babies usually die within minutes, hours or days. It is really awful, and there is no escaping it.

We should hear by Friday of the FINAL amniocentesis results, then we have some heartbreaking decisions to make. Please pray for a miracle. Pray that the 2% error on that preliminary test holds true for us. Pray for our family, because John and I are broken into a million pieces right now. Also, please don’t get offended if we don’t answer calls, texts, or messages right away. As much as we are trying not to give up hope, we know that there is a good probability we will not get to watch sweet Oliver grow up. Our world is crashing down on us…

~April

We’re Heading to Nashville!

Vanderbilt called TODAY! We have a consultation appointment scheduled for next Friday (7/29) at 7 AM! This consultation will take ALL day, and possibly go into Saturday. At the end of it all, we should know if we are approved for the fetal surgery. Until then, we have so many preparations to do between work, the kids, the pets, our house, bills, etc. We are so grateful for caring and understanding supervisors at work, who have made this such an easier decision.

IF we are approved for the surgery, we may end up leaving Thursday next week and not returning for at least a couple weeks – possibly longer. I’ve heard through the grapevine that Vanderbilt does their surgeries on Tuesdays, which means I would have to be in Nashville on a Sunday evening to be ready for pre-op on a Monday. That Monday could possibly be immediately after our consultation – or one of the following two weeks. So, as of now we are prepping everything as if the surgery is happening immediately after our consultation. We just want to be completely prepared.

Please continue praying specifically that we will be approved for the fetal surgery, that finances will come easily, John and I will not feel stressed, and for our kids – that they will be OK emotionally with being away from us for at least a couple weeks. Makenna is so nervous about Oliver, and has been mentioning his condition a few times a day – asking if the “bubble” is gone, if Oliver hurts, or if he is going to “go to Heaven”. It’s a lot for a 6-year-old to digest, so please pray for my babies too!

Lastly, THANK YOU SO MUCH for everyone who has made a donation to our YouCaring page! Without your donations, I am not sure we would even be able to afford to go to the consultation. So, THANK YOU! If you would like to donate, you can visit our page at https://www.youcaring.com/oliver-parmer-602351. Every single dollar is SO helpful, and we are SO grateful.

~April

What is “normal”, anyway?

The dictionary definition of “normal” is “conforming to a standard; usual, typical, or expected.” I no longer feel “normal”.

This time last week, I was a happy, “normal” pregnant woman, binge-watching episodes of Fixer Upper and browsing Pinterest for some super-cute classroom ideas. Now all I can think about is Oliver. Every kick I feel, I am reminded that my baby has to go through this. Every phone call I receive, I’m hoping that it’s Vanderbilt calling to schedule a consultation for fetal surgery. I can’t watch t.v., finish a meal, or even bother to get out of bed for most of the day. I take a shower at least 3 or 4 times a day, and take at least 2 naps. It has hit me, and has consumed me. I’m ready to feel “normal” again.

Last night Makenna (our oldest at 6 years old) was supposed to have a sleepover with her best friend. The sleepover ended up being cancelled last minute, and she was SO disappointed. It had been arranged that Bryson (our 2nd child at almost 5 years old) would spend the night with my parents for some special alone time filled with chocolate, bubble baths, and video games. Now Makenna was left at home with no one to play with and nothing special. So, Johnathan and I decided we would take her on a super fun date! We went wherever she wanted to go for dinner (Steak and Shake), Target to buy a little present, and to the movies to see The Secret Life of Pets. She had a blast and spent the whole time talking to us. However, as “normal” as last night should have been, all I could think about was Oliver, getting approved for fetal surgery, and the logistics of being on bed rest for 3 months – possibly in a different state than my children. In Target, we passed by this adorable little ride-on toy. Makenna said “We should get this for Oliver!” I just wanted to cry right there in the middle of the store. I looked at Johnathan and said “We don’t know if he’ll even be able to use that.” THIS IS HARD – and it’s only just begun.

Tonight I felt “normal” for about 3 hours. I went to my wonderful friend (and now Supervisor!) Debbie’s house for a “back to school bash” with most of the Special Education teachers at my new school. It was so nice to be able to talk to other adults about topics completely unrelated to Oliver’s condition. I got to meet a lot of new faces too! At one point in the evening we were just cracking up about the simplest stories. It was wonderful. I felt “normal”.

Now I’m home and getting ready for bed so that I can wake up early to go to church tomorrow morning. I am so blessed to be able to help lead our congregation in worship each Sunday morning with such an amazing team of talented musicians and friends. Tomorrow the church is planning to pray over Oliver and our family – that will NOT feel “normal”. I hate being in the spotlight… But we need all of the prayer and support we can get right now.

Thank you so much again to everyone who has been here for us these past few days. Maybe I’ll have more “normal-ness” in the next week. Or maybe I just need to change my definition of “normal”.

~April

 

 

Weighing Our Options

When the doctor gave us Oliver’s Spina Bifida diagnosis, he basically told us we have the following three options:

  1. Terminate the pregnancy. We immediately told him this is NOT an option for us.
  2. Oliver will be born via C-Section and almost immediately whisked away to the nearest Children’s Hospital for surgery. A pediatric neurosurgeon will fix the “bubble” on his back, and try his best to repair damage done to the spinal cord.
  3. Oliver can have fetal surgery while he is still in the womb, but it must be BEFORE 26 weeks. An OB will cut open my uterus and a pediatric neurosurgeon will repair Oliver’s back while his head is still immersed in amniotic fluid. They will then staple me back up, and I will spend the remainder of the pregnancy on strict bed rest. There are only a handful of hospitals that offer the surgery (the closest being Vanderbilt in Nashville), and it is a possibility I will have to relocate there until after he is born.

Like I mentioned above, Option #1 is NOT an option for us.

Option #2 made me realize I would (A) have to have my first C-Section, (B) my baby would have surgery before he’s even a day old, and (C) I would be at a completely different hospital than him while we both recover.

Option #3 scared the crap out of me. Surgery while he is still INSIDE of me? What are the risks to this? Bed rest? I’m starting a new teaching job at a new school in less than two weeks! What will we do with the kids? John can’t miss work while I’m recovering, and then also after he is born!

The doctor left the room, John and I looked at each other and both agreed Option #3 scared us to death and that financially there is no way that we could make that work with both of us away from our jobs. So, when the doctor came in and started talking about the fetal surgery again, we told him we didn’t think that would work for us. We left the doctor’s office with the thought that Option #2 was our only option, and we were being forced to take it – THIS IS NOT FAIR!

It’s been three days since Oliver’s diagnosis. In this time, we’ve grieved the “normal” baby we were supposed to have, and accepted the special needs baby we will have. As a special education teacher, I’ve always wondered how on Earth the parents of these kids do it – now I get to find out – and it actually doesn’t scare me at all. The part that scares me is the time frame between now and bringing him home from the hospital.

In these past three days, we’ve also researched extensively and revisited the original options the doctor gave us. Option #3, as scary as it is, is very much back on the table – here are a few of the reasons why:

  • No mothers have died from fetal surgery. 90% of babies survive. So, although there is a 10% chance we could lose our baby, it is a relatively small chance in the scheme of things.
  • Only 40% of children who have had fetal surgery needed a shunt placed in the brain within the first year, versus 90% of babies who had surgery after birth.
  • 36% of children who have had fetal surgery had less evidence of hindbrain herniation (downward displacement of the back of the brain), versus the 4% of those who had surgery after birth.
  • 42% of the children who have had fetal surgery were more likely to be walking independently versus 21% of those who had surgery after birth. These children also had better motor function than what would be expected based on the level of the opening of the back.

There are a few other statistics, but these are the ones that have jumped out at us. Even though we belong to the large percentage of Americans who basically live paycheck to paycheck, we feel our son’s future is most important here. FMLA may cover my bed rest along with Oliver’s birth, and I could possibly get short term disability for some of the time. If it means my son has even the slightest chance to walk more independently and possibly not have to have a shunt, this means the world.

So, right now we are “weighing our options”. We’ve put in a request at Vanderbilt in Nashville for a consultation. Even if we decide we would like to go through with the fetal surgery, Vanderbilt has to approve us. Oliver’s case basically can’t be too severe, but severe enough to make a difference in-utero. We figure going for a consultation won’t hurt anything, and will help us become more educated on his condition. Hopefully we will hear from them early next week.

For now we play the waiting game…

~April