Friday, May 31, 2013

Jobe's Story, by his mama

Post by Sacha

The 10th of November 2012 was the day that changed my husband and my life forever. What had started out as a normal and uncomplicated pregnancy all crumbled into pieces, when, during our 20 week scan the doctor told us our baby would have no chance of survival.

Our little baby had bilateral renal agenesis (potters syndrome) - meaning no kidneys and bladder. And there was no measurable amniotic fluid because of his condition, which meant that our baby's lungs would not be able to develop enough for him to survive. We were told he would most probably die in utero before 26 weeks and that the best option would be to terminate.

My husband and I were devastated, but decided to continue with the pregnancy and place our baby's future in God's hands. It was for Him to decide what would happen, not us.

Time went on and our baby continued to grow and remain active in the womb. We relied on God for His strength to get us through each day which was one day closer to saying goodbye. We prayed and prayed that He would heal our baby.

At 37 weeks and 4 days, on the 9th of March, 2013 at 6.47am, right when the sun was coming up, our little ray of sunshine entered our world. Our son, Jobe Samuel.

Precious baby Jobe <3

He was beautiful and perfect and born alive! His heart beat for 2 minutes before our God healed him and brought him home to heaven so peacefully. We spent the day surrounded by our family, whilst we held, bathed and dressed and loved our little man. Leaving him was the hardest thing to do.

Six days later on a beautiful sunny autumn day we said our farewells at a small graveside funeral with our family and close friends. He was our first child and will forever be in our hearts.

We look forward to seeing him again in heaven and know that he is there right now, perfect and complete.

Thursday, May 30, 2013

Personalized Blanket Giveaway!

UPDATE: This giveaway is now CLOSED. See the comments for the winner!!

It’s giveaway time!

Loss mama, Katie, from Cuties with Bows (Click here for Etsy and here for Facebook) is offering a beautiful, hand-made blanket in pink or blue dots to the winner of this giveaway!

It will be personalized with your baby’s name and special date(s).

This giveaway is open to babyloss families who continued pregnancy after a fatal diagnosis. One entry per person, please!

To enter:
  1. Like  - All That Love Can Do
  2. Like – Cuties with Bows
  3. Comment here with your baby’s name and special date(s). 
The winner will be chosen by Good luck!

Click HERE for photos of her past work.

Apple and Banana's Story, by their mama

Post by Evelyn

Our story begins in the year 2005, my husband and I had been trying for a child for some time but no success, then I was diagnosed with having PCOS (poly cystic ovarian syndrome). We began to see a fertility specialist through out the next several years, went through several methods to try to conceive. Medicines and injections to try and help stimulate ovulation, but every attempt failed us. We knew that there was a chance we had early miscarriages but they were never far enough along to medically diagnose.

Once the year 2009 arrived I was the healthiest I had been in years, lost over 100 lbs, and we were ready to move forward onto the next step in conception or so we thought. Everything moved so quickly, too quickly in fact. We had scheduled to have an IVF done that late summer but began to rethink what we had scheduled, we were not financially committed as of yet. We knew that our condo with only two bedrooms would be a concern factor if we became pregnant with multiples, because that is always a chance with IVF. So we canceled our procedure and moved forward in a different direction, buy a house instead and save up the money for IVF when we would next be able.

By spring 2010 we were living in our new house, a ranch home with four bedrooms, two full bathrooms and hope for filling those rooms with babies. We tried but still unable to conceive we returned to the original plan, IVF. I called a new office in 2011 with hopes that our dreams would finally come true, but we had to cancel our opportunity before we even began because the consult alone would cost us too much. We felt like our dreams would never come true, but we would be wrong, that would not be the end.

By spring 2012 we met with a new doctor for a consultation, this time it was a free consultation, and we proceeded forward after all the attempts over the years. We scheduled our IVF for August, put down our down payment and it was all actually happening, it was real, we were ready. July began birth control, then different injections that stops ovulation, others help your eggs mature, then a booster that helps everything complete it's maturity before egg retrieval. We were hopeful the entire time because the years prior we got positive news, all my labs came back normal, my tubes were clear, uterus looked beautiful and pear shaped, my cycles regular after all the years of irregularity, and absolutely no sign of having PCOS.

Finally the time came and our eggs were retrieved, it was all happening, out of all the eggs they retrieved six ended up looking perfect and the best two would be transferred fresh in a few days, the remaining four would be frozen for the future. Transfer day was relatively easy, our hope grew when we were told the doctor thought our chances for pregnancy were 60%. Then the two week wait began.

By the time August 30th arrived we were nervous and excited. I went in for my blood draw and patiently awaited to call in for our results on our pregnancy test. I met up with my husband for his lunch break and we made our phone call, anxiously awaiting for whatever we would hear, we were pregnant! It was finally happening, it was real, overjoyed and in tears we had our first happiest moment.

Days later I had my second blood draw, we needed to see that my beta numbers were doubling as they should be, test my progesterone levels too. Not only did it look to have doubled, but it looked to have increased even more, we would have to wait for our first ultrasound to see if both embryos took and if we were pregnant with twins or it was just one baby.

I visited the doctors office while I was there that day for the second blood draw because I wanted to ask about the symptoms I had been having. There is always risk of hypersimulation of the ovaries when you have PCOS and go through IVF, we understood that risk but were hopeful I would not have that happen to me. Upon visiting the doctor that day I was told that not only had my ovaries hyperstimulated but that it was the worst case he had seen and wondering why I wasn't in any pain or more discomfort over it, my ovaries were the size of large grapefruits. It was official, I had OHSS, ovarian hyperstimulation syndrome. For the next two weeks was put on blood thinner injections, all while still taking my progesterone injections, increased fluids and first round of bed rest.

My follow up appointment would be about a week later and we were excited to see our baby for the first time, hopeful that my ovaries were finally less swelled and the hyperstimulation better. I remember seeing an area of black on the screen during my prior doctors visit but I was there for my ovaries that visit so that was not the area of concern that day. Finally the moment arrived and after my ovaries were checked, yes beginning to look better, this is how I remember the appointment going while looking at the screen during our ultrasound. "Ok, do you see this area of black on the screen, this is where your baby is", the image was zoomed in. "Here is the baby, do you see this circle here and this flicker? That is your baby and the heart beat.", and then our life changed forever, "..and wait, there is a second circle, you're having twins. I can't find the heart beat on the second baby so it's too early to tell right now but it looks like you're having twins." Our second happiest moment had happened.

During our appointment learning we were having twins, we learned they would be identical too. I remember the ultrasound sonographer labeling the picture we would be taking home with us, Baby A and Baby B. I remember turning to my husband and saying to him, "Baby A and Baby B, our little apple and banana", our babies had nick names and we were so overjoyed, our dream of having twins was coming true.

Weeks later in September we had our first scare, I woke up early on a Saturday morning with pain in the left lower part of my abdomen. Knowing that it could either be a ligament that stretched or a cyst rupture I wasn't about to take any chances. After hours of no pain relief I was told to go to the hospital, and was to stay in the hospital for the night for observation. I will never forget what our babies looked like on the screen during our ultrasound while the sonographer was checking to make sure everything was ok, we should have taken pictures because that machine had the best clarification and magnification we had ever seen. After that night of observation I was discharged and instructed to go home and rest, this would be my second round of bed rest.

October finally arrived and my ovaries were beginning to heal, things were moving along smoothly or so we thought, and then mid-late of the month arrived and we had our second scare, bleeding. Drove to a different hospital because now I was under the care of a high risk obgyn because of my health history and our having twins that were monochorionic, which meant that one egg split late, identical, two separate sacs but a shared placenta. While in the ER that day we checked heartbeats, had a quick ultrasound done, and visual checkup, everything looked to be fine at the moment but we were told that we had a threatened miscarriage. A threatened miscarriage? After years of trying, then finally conceiving, and hearing that diagnoses there has to be a better way to describe potential problems in pregnancy. Third round of bed rest and it looked like everything would be ok.

By October we learned that there could be risk of our twins developing TTTS (twin twin transfusion syndrome), which is where one baby will receive more nutrition than the other baby and may not grow as quickly as the other. Despite what we were told could happen, we were told not to worry about it until it looked to of been of concern.

November was our best month, we watched our babies grow, yes there was slight size difference between both babies but nothing to be too concerned about. From little circles, to little tadpoles, to alien like babies with large heads, to babies with buds for arms and legs, to what we remembered most in November, babies with full arms, legs, and our beautiful little pieces of us growing larger each week. We felt like we could finally relax, week 12 was well behind us and we had hope for the future.

Week 17 changed everything. Our December 3rd ultrasound checkup we learned that there could be a problem. I could see the the fluid around our Baby A wasn't as much as Baby B, and because of that Baby A wasn't allowed to grow like Baby B was. We were diagnosed with possible Stage 1 TTTS and told to see a specialist that week as soon as possible. We scheduled to see the specialist on the 6th. Stage 1 TTTS is basically where it looks like there is a growth difference between the babies, less fluid around one baby than the other, and where one baby is larger than the other.

December 6th was the longest day ever, half a day of several ultrasounds checking their heart rates, measurements of bladders, measurements of size of the babies. I could see visually that just between the 3rd and the 6th that there was less fluid around Baby A and I was told I was correct in my observation. Our twins were upgraded from the possibility of having Stage 1 TTTS to having Stage 3 and beginnings of Stage 4 TTTS. We were heart broken, scared, and knew without surgery our pregnancy would be fatal. We knew what we had to do and not even a moments hesitation, "Save our babies doctor, please do what ever you have to do and save our babies!" The differences in stages of TTTS are basically this, once the amount of fluid around the babies becomes a large enough difference to where it begins to effect growth of the babies, difficulty seeing the bladders, medical intervention is almost the only way to save the lives of the babies, Stage 5 TTTS is too late.

On December 7th we underwent a surgery to try and save the lives of our babies. My uterus was the size of a woman who would be 35 weeks pregnant, it was not surprising that yet again the size of my belly did not discomfort me. We were all three put to sleep for the surgery, a small incision made around the side of my belly to reach around the back of my uterus to laser apart the large connecting blood vessels on the shared placenta. The doctor was not able to be successful with the small incision made on the side of my belly so he made a vertical cesarean incision, pulled out my uterus and performed the surgery. While the doctor was performing the surgery he also drained several quarts of  fluid to help with discomfort, I later told him that he didn't need to do that because I wasn't uncomfortable. Surgery was now over, it was time to rest.

Highly medicated and resting after surgery, having contractions are common after a surgery like this, this surgery is not something minor. After awhile the contractions were finally gone, some of the medications could be discontinued and I could relax a little better, but not for too long. That night on December 8th through the early am hours of the 9th I bled, a lot, but upon examination it looked like both babies were ok, so I tried to rest and remained hopeful that all three of us would be ok.

On December 9th our doctor visited my room for the daily ultrasound to check on the babies. Upon examination I could see some movement but it looked like our Baby A was sleeping, our world shattered the moment our doctor told us that our Baby A was gone. Baby A's heart was not beating, there was no movement, but our Baby B was still alive, their heart just didn't have to work as hard as before because it was just them now. Our hearts were broken but we decided we had to stay strong for our Baby B.

That night with Baby B wasn't easy either. I was given a medication that is helpful for women who are having contractions, but I wasn't having any, it was a teaching hospital so just because one medicine doesn't work for one patient, doesn't mean it can't help another. I remember telling the doctor that morning, the same we had seen the prior day who also performed the surgery, telling him how the medicine made me feel, I had a horrible reaction to it and seemed like I was actually allergic to the medication, I wasn't able to sleep that night and both our heart rates were elevated all night, difficulty breathing or feeling calm enough to rest. The doctor told me that he did not prescribe this medicine to me, that the hospital was a teaching hospital and that it should not have contributed to any potential problems, but that it certainly did not help either. Baby B was still with us but heart rate wasn't beating as quickly, heart rates through out pregnancy were anywhere between 140-160 beats, then at that moment was more around 118, but again informed that it was just one baby and the heart didn't have to work as hard because it was just one baby now.

Later that day it came our second ultrasound check of the day. I remember the doctor on call coming into our room and checking Baby B, looking and being very quiet. I could still see flickers of colors moving in the baby's heart, but the doctor said nothing but, "I can't find a heart beat on Baby B..." and stepped out to get another doctor to confirm something. Another doctor came into the room and looked at the screen with the other doctor and then we heard the worst thing you could possibly hear after everything we had been through, it basically went like this, "I'm sorry, there is no heart beat, your baby is dead.." and then they walked out of the room leaving us shattered, completely and utterly shattered.

All of our hopes and dreams were suddenly dashed away in just a moment, we were beyond heart broken. In tears, screams of tears, everything over. Our lives had been turned upside down and I wanted out of that hospital. I was told earlier by my doctor that if I felt fine I could leave that day, no more contractions, no reason to stay, and these babies were not going to be labored any time soon.

For the next 18 days I had contractions every day, usually brought on by car rides but it seemed like anything would trigger a few painful contractions every day. My husband and I wanted a fresh start going into the new year as laboring naturally after our babies passing could take weeks if not months. We scheduled to come in for induction, on December 27th I arrived at the same hospital where we tried to save our babies lives, where they both died, and now I was about to labor them. I was not dilated and my cervix was not soft for labor, so it would take several doses of medication to help induce labor. It was after 7pm that I received my first suppository and within the hour the contractions began, though too light for me to notice until later through the night.

As the night continued the contractions became stronger, hourly monitoring helped to know where I was visually and every few hours another suppository to help soften the cervix and help with dilation. By around 2am on December 28th the back pains were beginning and the contractions becoming more frequent through out the night. By about 5am enough was enough, I decided to take one pain pill to help take the edge off so I could sleep. The patient across the hall from me was in labor and her yells and moans were quite loud, and for some reason her nurse kept opening the door to her room, I couldn't sleep. My nurse kept shutting her room door but this happened through out the entire morning, I didn't sleep but maybe five minutes.

Once 7am arrived I needed something more for the pain because the back pains were too painful by then, I had never thought I would experience back labor but that is what it was. For me it felt like the pains started in my lower abdomen but then shot straight to my lumbar spine and stayed there. Years later I had had two different surgeries on my spine, the second a lumbar fusion which left with me permanent nerve damage and disabled. This was not helping the back labor.

One hour later I was due again for another suppository and they would not be able to give it to me until they were able to control my pain. At no time was it ever recommended to me to try to get up out of bed and stretch, take a shower, use a birthing ball, walk around, nothing was recommended to me except the use of pain pills, drips or an epidural. First we tried the morphine drip and of course that did not work and the machine kept having complications, then finally another pain pill but this one was supposed to be stronger than the first I had taken, that did not help either. I was at my wits end, looking into my husbands eyes I decided it was time to try the epidural. Amazingly enough the epidural did not work! Probably the first time in history that the staff had ever seen an epidural not work for a patient who was in labor because I could still feel everything.

I remember finally laying back and trying to relax, it was finally around 11am, everything was a painful blur to me but finally my water broke and after that felt the urge to push, it was all happening so fast now. At 11:20am our first was born into the world, Baby A, a girl, 5.6 ounces. Minutes later our second was born into the world, Baby B, a girl, 7.4 ounces. After our twins were born it was like something popped in my spine, I felt it after Baby B was born, like the compression of them in my body and the back labor was preventing the medicines and the epidural from working all this time. There suddenly I could feel everything working, all the medicines and the epidural, I began to go numb and everything from then on was a blur to me. I was in for the real struggle now and the fight of my life. This placenta was not wanting to be born.

The placenta was larger than our twins were and I wasn't dilating anymore even though I was in labor, it took two more hours before the placenta was birthed. Two hours and I was losing so much blood it was terribly frightening. I was told that if it continued for much longer that I would be rushed into surgery and they would have to preform an emergency D&C to get the placenta out and a blood transfusion because of my blood loss. I reminded the doctors and nurses in the room that our doctor wanted the placenta to be sent off for examination and I wanted to birth it naturally if at all possible. A last attempt effort was done and success, they were able to pull the placenta out of me. Finally it was all over.

When I finally came to I realized that my mother was there in the room with my husband and I. Our twins were in the cradle across the room but I wanted to have more awareness before I saw them. I was pale from blood loss, weak, exhausted from labor and lack of sleep, all I wanted to do was sleep but I stayed up as much as possible to be able to try and eat and drink fluids. It wasn't until around 6pm that evening on the 28th that we finally saw and held our babies for the first time. Looking back now I wish we would have done it differently, I wish we would have known what to expect, wish we would have done more, but what we did know is we had no idea and were not prepared for any of this.

Our babies were beautiful, identical twin daughters we had. We named our Baby A born at 11:20am Apple Marie, and we named our Baby B born at 11:30am Banana Lee. It was all too real to bare. Part of us wished it was a nightmare we were both having, that we would awaken from it and everything would be ok but we knew the truth, our babies were gone, this was it, our babies had finally been born into the world and they had earned their angel wings.

beautiful little sisters <3
I was able to spend one night with our twins in my room, I held them that morning, spent time with them, had every urge in my body to bring them back to life somehow but knew there was nothing I could do. There was nothing I could do other than tell our beautiful girls how much I loved them, sing to them and hold them some more. I will never forget how their weights felt in my hands and in my arms. We said goodbye that day on the 29th of December. By the 31st were arranging for our twins to be cremated and by January 7th 2013 our twins returned to us in their urn on my birthday, bittersweet.

I still miss holding our girls to this day, months later I miss them and have wished that my arms were not empty. May 9th 2013 was possibly one of the most difficult day come to date so far. This date was our twins expected due date and even though we knew our twins would most likely be before before this date, as early as 35 weeks, this date was still important to us. May 9th was also the five month anniversary of our Apple's passing and May 10th would be the five month anniversary of our Banana's passing. Even though the week was a blur, sleep became a myth, and my heart was low, nothing could prepare me for how I would feel on Mother's Day.

Mother's Day arrived and by this time we should have been parents for the first time in every way, but instead we were parents to angels, empty arms and insomnia. Somehow again I made it through the day and with the support of my husband, who I don't know where or what I would be without, he who is our girl's daddy and my best friend.

Now it's all about healing and moving forward the best way we can, one day at a time. I have no idea what the next set of anniversaries will feel like, August through December this year will be filled with so many emotions I'm sure of it.

What we hope for now is our rainbow, that baby you have after loss. That baby that will help heal your heart after it's been broken into an unrecognizable amount of pieces with no idea how to put it back together again. To be honest, your heart is never the same after the loss of your child(ren), you are never the same, your heart my mend but it's like a scar. The loss and love for your child(ren) is always there and that scar will always be a reminder of them.

I hope for peace someday and currently trying to heal, both of us are. I participate on several support groups, support different types of baby loss charities and have started my own support group and charity in memory and in honor of our twins.  You can find it here.

The best gift that our twins ever gave me was our last days together. It had been flutters before but the last day with both girls were good solid kicks. Apple's kicks were like a flick on the palm of your hand, we thought of her as our little soccer player with how those kicks were. Banana's kicks were like a ballerina dancing on your belly, very gentle and sweet compared to her sister. We thought of her as our princess ballerina with how her kicks were. I used to have phantom kicks too, but those too stopped once our twins were born.

Our baby girls were with us for 18 weeks 3&4 days. I do not regret what we did to try and save our daughters. I miss our twins every single day and not a moment passes that I don't think of our girls. I love them so very much, some days it hurts to breathe and feels like my heart is literally breaking apart, but somehow I find strength. I know our girls would not want us to live in grief and miss them not being able to live our lives, our girls would want us to continue on, to have more children.

You see, we angel parents have something in common, we all have something that connects us all, we are a family of angels. Take comfort in knowing you are not alone. Much love, peace and healing to all who have experienced the loss of a child. It is not an easy journey to heal from, this is a loss like no other, it is not natural to lose a child and only becomes more heartbreaking the longer time you have with your child(ren). So you see it does not matter if your loss happened at four week or forty years, the loss of your child(ren) is devastating. There are many supportive places to turn to, understanding and caring people to be there for you, and ways you can honor and remember your child(ren). Know that your child(ren) love you and know that you love them. Remember most of all that you are never alone. We are a family of angels.

To our precious and beautiful daughters Apple Marie and Banana Lee, your parents love you very much and miss you every single day. Please visit us on the wings of butterflies, send us snow flake kisses, remember that you don't need to cry rain drop tears but when you do know that we love you too, and sparkle on your little diamond hearts in the sky so we can see you both at night shining down on us. We will never forget you. Thank you for making me a mother. Momma loves you both, forever and ever!!!

Wednesday, May 29, 2013

Riley's Story, by her mama

Post by Lynn

Our pregnancy started off with one baby and an egg about 5 to 6 days difference in age. We returned in two weeks and there were two babies. My husband Jeff and I were so excited, TWINS!!! Their ages were funny to us being so different in age but we were so happy.

Our pregnancy had a few scares however we were seeing the babies growing each ultrasound and we were falling more and more in love with them every day.

Our lives changed drastically at our routine check up at 19 weeks. The ultrasound tech stopped showing us all the neat pictures and said she was having problems getting good head measurements on baby A. She took so many pictures and was very still. She then said she needed to have the Dr check the measurements. The two did even more checks and measurements and they told us to dress and meet them in the office.

We were told that baby A had a defect and it was incompatible with life. Our baby would die either before or during delivery or shortly there after birth. Our hearts broke. I was scared and sure that the Dr was wrong. I asked for them to do an amnio to confirm the findings.

There was no chance of a mistake the news was 100% confirmed. Over and over during our pregnancy we heard the words and had to repeat them ourselves when we had ultrasounds with a tech that didn't know the defect or a new Dr that was not familiar with our family and our girls.

I wanted to bond with our babies and not just call them A or B we had not planned on finding out the sexes however the diagnosis was heart breaking and we wanted to know them both as much as we could. Our little ones were both girls and their names were picked even before pregnancy Our girls are Riley Sophia and Abby Nicole.

Our pregnancy was rocky from that point on and we were in and out of the hospital and on bed rest. Our girls were doing well and growing nicely however I was dilating and having contractions. My girls were born at 30 weeks when my water broke and contractions were not stopping.

Riley did pass away shortly after birth however after meeting other moms online I have found that other babies are surviving to go home with their families and surviving in some cases weeks, months and even years. I never thought babies like our Riley were going to thrive, I was amazed that she could have had more time with us since the definition seemed so bleak.I then found there was so many other conditions that were labeled as incompatible with life. I feel that these infants deserve more than a blanket definition that doesn't give a clear pictures of their potential. There isn't a severity listed with the conditions only that they are expected to pass away before, during or just after birth. I hope to change the terminology so they will be given hope instead of a definition so subject to interpretation.

Beautiful baby Riley <3
*Note: Lynn started a movement called "End Incompatibility With Life". The goal is to change the terminology used in medical settings. You can learn more and join the movement at the page: End Incompatibility With Life

Tuesday, May 28, 2013

Waylon's Story, written by his mama

Post by Amanda

It all started with a nurse handing me a business card with three words written on the back: "congenital diaphragmatic hernia." I had never heard these words before, never knew how much these words would change my life, and didn't fathom that these three words would take my baby's life.

That echo sonogram appointment on January 9, 2013 when we received Waylon's prognosis of CDH started our crazy journey of what was left to be the rest of his life.  A part of me is thankful to know ahead of time what Waylon was facing, but from 25 weeks on I was never able to enjoy his pregnancy the same, knowing that any moment could be his last.

We did everything the Dr's suggested...amniocentesis (which came back with no genetic links...this increased his survival rate slightly), Fetal MRI (this showed he actually had 2 lungs when the sonograms were only showing 1), meeting with specialists from the Children's Hospital where he would need to be born, coming up with a plan for his CDH surgeries he would need, meeting with a high-risk OB weekly, being admitted into the hospital for monitoring, 3 times a week getting bio-physical profiles (sonograms to watch for movement, practice breathing, etc) and NST's (monitoring heart rate)...just to make sure Waylon was OK.  One appointment would be "OK," the next "things aren't looking the greatest," to everything is "staying stable," to "we aren't sure if he will make it to the next appointment," then finally some light...things are actually looking "better."  You could say that this was a roller coaster to put it mildly!

I was getting brave, on February 27th, I made the first trip to Children's Mercy for my weekly appointment ON MY OWN.  This happened to be the best appointment we had had so far.  They took the measurements and some adorable pictures of Waylon playing with his feet.  The high-risk OB came in and looked again at Waylon and said..."I don't know why, I don't know how, but the hydrops/extra fluid is almost all gone."  It was hard NOT to get excited, this increased his odds of survival even more!  I was cautiously optimistic as I drove home jamming out to my favorite tunes and spreading the news to my husband/family. 

Then the next contractions started.

It's amazing how fast you can forget what labor feels like.  It took me a long time (hours) to realize what I was feeling was contractions and they were happening pretty regularly.  I sat down to eat dinner with Gracyn and I suddenly lost vision in my left eye.  Then I knew it was time to go to the emergency room.  Fast forward to hospital...sure enough, those were contractions I was feeling and I was already dilated to a 3.  They hooked me up to magnesium and then my Dr. came in and told me it's probably best to send me to KC in case I was in preterm labor.  Here's where the real excitement started:  ambulance ride to the airport, put on a JET to KC, landed in down town KC, then ambulance to Children's Mercy.  I get to Children's Mercy and it's almost midnight, I'm exhausted from a full day of teaching and then all of the excitement of getting to KC.  My blood pressure was still all over the place so unfortunately I was unable to stay at Children's Mercy.  You have to be a healthy mom to deliver there because they only deal with the babies.  So on to my 3rd hospital of the night...Truman Medical Center.  By this time the magnesium had done it's job and my contractions were almost completely stopped. 

The next few days were uneventful.  Waylon's heartbeat "thumped, thumped, thumped" on the monitors as Hoyt and I got used to hospital life.  Friday comes and goes....Saturday gets here and they noticed my liver levels were starting to elevate (showing that my liver may be shutting down).  They just planned to keep monitoring us both and then come up with some type of plan on Monday.

However, Waylon had other plans.  On Sunday morning, March 3, 2013...Waylon decides it's time to make his way into this world.  Boy, he was ready and there was no turning back.  I woke up at 5:30 AM to go to the bathroom and then contractions started fast and furious.  The next hour was a whirl wind.  The nurse found a doctor and when they checked I was already dilated to a 7.  I freaked.  I knew in my heart Waylon was too small.  The CDH had caused his lungs to be severely underdeveloped and now he was going to add prematurity on top of that.  Sure enough, the Dr. affirms they won't be able to stop contractions, there is no time for an epidural, and there isn't time to go back to Children's Mercy to deliver.  Mass chaos begins...nurses from NICU start prepping for Waylon, nurses trying to clear our room, other nurses running trying to find all of the doctors who were finishing up with another delivery.  I tell Hoyt to go take a quick shower and get ready for the day.  Next thing I know during all this chaos my water breaks...EVERY WHERE.  Remind you I had polyhydramnios (extra fluid) I mean everywhere.  Only a contraction or two later I was asking (aka begging) to push.  Next thing I know...Waylon was here at 6:21 AM.  Who ends up delivering Waylon...The doctor from another hospital that confirmed his diagnosis of CDH (weird, huh?).  Hoyt walks out of the bathroom to witness them cutting the cord.

There was no cry (we were expecting this with the underdeveloped lungs).  But oh how I will remember the look of Waylon's face....he was trying so hard to breathe.  When they laid him on the table we heard a little bitty peep.  The next minutes seemed like an eternity for me, I can only truly remember the sounds of all the alarms going off.  You learn quickly alarms are not a good sign, they are a warning that something is not right.  Waylon was fighting for his life.  They would get his heart to beat a few times and then it would stop.  They tried epi...they tried to intubate and nothing was working.  It was all just too much for his little body to handle.  They tried for 30 minutes, then they asked if we would like to hold him...we said of course. 

Hoyt and I were so blessed, we got to spend that Sunday with our very own angel.  We held him, hugged him, kissed him, bathed him, dressed him, read to him, took hand prints/footprints, talked to him about his family and told him how loved he is.  We found out that this big guy weighed in at 3lbs, 11 oz and was 16 inches long.

I knew that Waylon was in good hands when we were taking some more family pictures and I noticed a special message. The outfit I had bought, washed, and packed for him but never noticed before had a little tag on it that said "Grandpa's Best Friend."  Waylon is in heaven with his grandpa and other relatives that have gone before him.  I can't be with him now, but I know that some day we will be together again.

Waylon was in our arms for a short time, but he will forever be in our hearts.  

Read more of the story HERE

Friday, May 24, 2013

Brayden's Story, by his mama

Post by Alicia

Brayden Alexander was diagnosed with a terminal brain abnormality at 22 weeks gestation, at which point they did little more than advise termination and wait for the bi-monthly ultrasounds to show that he had passed away. The pregnancy was tumultuous, but continued without a problem, and he arrived at 37 1/2 weeks despite all odds against him. At birth he was diagnosed with a rare neurological condition called hydranencephaly; he was missing both cerebral hemispheres of his brain. He did so much more than anyone would have anticipated, and shocked doctors every place we went (we are a Navy family, so we moved 5 times in his 4 years). Medical text gives a doom and gloom prognosis, but he smiled through it all and lived a joy-filled life full of adventure and fun! They said he would never smile, regulate his own body temperature, eat orally, speak, sit, walk, or really live any more than in a vegetative state... they could not have been MORE wrong!

Sadly, he passed away unexpectedly at home on November 15, 2012 at the age of 4 years old.
But, his little light continues to shine through the foundation I was fortunate enough to create in his honor. Global Hydranencephaly Foundation was incorporated on June 14, 2011 and has brought hundreds of family together while providing the information and resources necessary to provide these children with the best quality of life possible. There is no cure, we aren't searching for one, but we do believe in the impossible. We work hard to ensure that these children are given the opportunity to live the life they deserve, regardless of how short it may be.

Here are associated links:

~Brayden's entire journey chronicled at CaringBridge:
~Brayden's FB page:
~Global Hydranencephaly Foundation website:
~Information Page by GHF:
~GHF blog:

Thursday, May 23, 2013

Hope's Story, by her mama

Post by Stacy

Hope Elna Lockhart was born November 19th 2010 at 4:38am.

She was diagnosed with skeletal dysplasia at our 26 week appointment. It was a lethal form of skeletal dysplasia. We were told she might not live until her due date of January 19th 2011.

Hope was born alive and lived for 32 minutes. 32 minutes that she spent with her daddy. I was asleep because of the emergency c-section and bloodloss.

It has now been over 2 years and we are learning how live and function without Hope here. It has been a very tough road. Even taking it's toll on our marriage. But we are working on that now too.

Thank you for letting me share our journey of loss.

You can read more about our Hope Elna at my blog:

Wednesday, May 22, 2013

Charleigh & Baileigh's Story, by their mama

Post by Kayla.

In April 2011 we found out we were expecting twins.

A week after we found out they were identical girls in June we found out all my fluid had disappeared. Baby a had an ecogenic bowel and baby b had an ecogenic kidney. Fluid was lowest on baby b the whole pregnancy and she was also thought to have a brain bleed.

At 24 weeks the doctors said it would be best to abort the girls because they would most likely be dead in the womb by 26 weeks. We went to Cincinnati and they gave our girls 10% chance of surviving. I carried them until 33 weeks.

They were both born screaming but were intibated right away. Both girls went down hill fast and after 40 hours we lost Charleigh (baby a). Her lungs just weren't developed enough to support her body. Baileigh (baby b) did a complete turn around and was off the vent at 6 days old. She spent the next two months in the NICU two hours from home. Baileigh weighed 3lbs 7oz and Charleigh weighed 4lbs 4oz.

Beautiful girls <3  Baileigh and Charleigh
 Now Baileigh is 19 months old and progressing much faster than most preemies. She is small for her age but the only things wrong with her are asthma and a multi cystic dysplastic kidney. She's right on track with everything.

She is my miracle and I'm glad we left it up to God to decide their fate.. not the doctors.

Tuesday, May 21, 2013

Makenna's Story, by her mama

Post by:  Amy
Our story begins in late spring of 1999, we were a young couple with 2 little boys ages 2 & 4. We had just bought our house the year before & had both recently asked Christ into our hearts. My husband worked hard to provide for his family while I stayed home to care for our boys. I remember taking the pregnancy test that morning, I was hoping it was positive & it was!!! My husband had just bought a riding lawn mower a few days before & I knew that’s where he’d go after work. So I put the test in a small box along with a note that said, “Congratulations, you’re gonna be a daddy again!!!!”. I was watching from the kitchen window with anticipation as he opened it, he threw a fist in the air out of excitement. We were so happy to be welcoming our 3rd and final baby, we told all our family & friends, everyone was very exited. I was really hoping this baby was a girl since it would be our last.

Our first appointment was on June 10, 1999, I was 9.5 weeks along. My Dr likes to do ultrasounds on the first visit to get an accurate due date. We knew the U/S tech from our 2nd son, she was excited for us. We were all chatting away when she started the scan. She showed us our baby, we seen a good strong heartbeat!! I instantly fell in love with this little peanut.
The tech got very quiet & my husband seen her facial expression change drastically, so he asked her if something was wrong, I will never forget what she said next, “Well, I can’t get an exact measurement on the baby’s head”. Those words were the beginning of a journey that forever changed our lives. The Dr came in to take a look, he said, “It looks like it might be hydrocephaly (water on the brain) but I’m not sure yet”. He made an appointment for me to come back in 2 weeks, the baby would be bigger & he could get a better look.

On June 25th I went in for the 2nd scan, this time Bob had to work so I was by myself, big mistake!!! The room was quiet, He said only a few words before he started. Honestly I think he already knew. It lasted less than 10 minutes & he shut it off. He stepped out for a few minutes to let me get dressed. When he came back in he had a very serious look on his face. He told me that the baby didn’t have hydrocephaly, it was worse. He said, “Your baby has anencephaly, babies don’t survive long after birth with this”. I was confused, in shock & wanted to know what this thing she had was. He explained it to me, it took a few minutes to sink in that my baby was going to die. I was so upset & could not understand why this was happening to my baby, to us!!
Makenna, baby with anencephaly
I still have no clue how I made it home safely. By the time I got home my husband had just gotten home as well. I met him at the back gate & fell into his arms, I couldn’t get the words out without crying hysterically. I said, “they said our baby is going to die!!!” I will never forget the look on his face.

We went back for a meeting with our Dr, he told us we could terminate the pregnancy if we wished. We both said NO at the same time, abortion was not an option for us, that is a choice I could never have lived with. I told him that if we aborted this baby, it would take away any chance for God to heal it, it’s not up to us to end this child’s life. Our Dr supported our choice to carry our baby to term.

He got a medical book from his office so we could see what an anencephalic baby looked like. That picture haunts me to this day, it was a small picture of a nude baby on a silver morgue table. There was a paragragh explaining the baby’s condition & that's it. I am so happy that there is so much more a Dr can offer today. He told me that I will probably not feel my baby kick maybe move a little. He told us a few more “facts” about anencephaly including how the babies can’t cry, hear or see. I told him that doctors were only human & how he could be making a mistake & he agreed & said how he hoped & prayed he was wrong.

I did not have internet access so a very good friend was able to find info for me along with a diagram of a healthy baby’s head & one with anencephaly. This & what my Dr was able to offer was all the information we had.

We told our families & friends, we were all heartbroken. From then on I never went to an appointment by myself, someone made sure they were with me, I called them my three musketeers LOL they kept me laughing while being great support. Hundreds of people across several states began praying for a miracle, along with us.

No matter how hard I tried to stay positive, I felt myself slipping, I started to feel like such a failure as a mother & wife. I felt as if I was the cause of this happening to our baby, a sense of shame & embarrassment came over me every time I had to tell someone that asked about my pregnancy. My husband was upset because I was blaming myself & when we are going through such hard trials in life, sometimes it’s easier to tell someone you love how you feel in a letter & he did just that. Something he said in this letter touches my heart deeply because it is true:

Makenna, baby with anencephaly
I was worried about telling my 4yr old, how was I going to tell him & protect him at the same time??? I wasn’t as worried about my 2yr old, he was to young to understand what was going on. A few months went by & I began to feel little kicks that became stronger & stronger. I had an appointment to see my Dr at around 20 weeks or so & I told him how I was feeling the baby kick a lot. He got very excited, remember he was hoping he was wrong & from what he told me I wouldn’t feel her move much at all. So he immediately took me to the ultrasound room for a scan, Bob was with me this time. When he put the wand on my belly we instantly saw this little person jumping up & down as if on a trampoline but also immediately seen that the baby did indeed have anencephaly. We watched the baby for a few more minutes in complete awe over this little life. I asked the U/S tech if she could tell what the sex was? “It’s a GIRL” she said, but I became very angry. This was the little girl I had hoped for but I was going to lose her!!!! They gave us one picture showing her sex & said they couldn’t give us any of her headshots, I crumbled it up in my hand out of anger. They allowed us to leave through a side door, I cried the whole way home. He held me close that night & many more nights to come.

As the months went by I tried to enjoy her kicks & wiggles. I was the only one that knew when she was awake, asleep or having a jump-a-thon on my bladder, all of which I couldn’t get enough of. One day I decided to put headphones on my belly, she was very calm but when I turned on the music, she started moving & kicking like crazy. I remember thinking to myself, can she really hear this???? Daddy loved to poke at my belly & she loved to kick him back, we were amazed because she could feel us, yes FEEL!!! My baby girl was acting just like my boys did, I was not wanting to believe that this was happening. I had my husband set the crib up but had him take it down two weeks later, I couldn’t take looking at it. I picked out a baby dedication dress for her to be blessed in or buried in, along with a beautiful white blanket that had rocking horses on it with a matching pillow that I still have.

I was 7 1/2 months along now & she was head down now & as active as ever. I was sitting on the floor folding laundry when she started to kick me very hard, I thought this was odd. Then her entire body stiffened out straight & was shaking. I had to almost lay down to give her more room, it lasted 30-45 seconds or so & was over. I told my Dr what had happened & he said it sounds like she may have had a seizure.

At 8 months we started seeing him weekly. During one appointment a friend remembers him thanking me for allowing Makenna to educate him about anencephaly. In a healthy pregnancy, mom & dad are wondering with excitement about who the baby will look like & they talk about ten fingers & ten toes, exactly the way we did with our boys. We took life for granted. This time we were terrified of what our baby would look like & didn’t care if all ten fingers & toes were there, she could live without those. I tried so hard to have complete faith in God, but when faced with a situation like this, it’s hard not to question Him & ask WHY.....

”Trust in the Lord with all thine heart, and lean not on your own understanding;
In all your ways acknowledge Him, and He shall direct your paths.
Proverbs 3:5-6
On my last appointment I knew it was time, I told my Dr that I was ready. I had carried my baby the full 40 weeks & it was time to bring her into the world.

On January 10, 2000, I was admitted to the hospital at 6pm. We had a birth plan & my Dr made copies & made sure all nurses read it & followed every detail. I wanted her treated no different than any other baby being born (with some exceptions), no one was to be turned away, she was not to leave our room except to have her picture taken. We chose not to have her heart monitored during labor, I didn’t want to hear if my baby died on some machine. At 8pm the induction was started, my cervix was not ready at all & that is very common with our babies, so they had to administer a cervix softener over night to help my body go into labor. Early the next morning Pitocin was started & it wasn’t long before I started feeling contractions. I chose to have an epidural, my boys were very painful births & I wanted to be able to keep focused & make decisions with a clear head. A lot of family & friends came to the hospital to support us, we were all praying for a miracle.

Besides my husband, my mom was of huge support, she made Makenna a beautiful blanket (the one she is wrapped in), every single inch made with love for her granddaughter. She never left my side. Around 10:30ish that night, I started to feel pressure & let the nurse know. I was fully dilated, it was time. A fear unlike anything I have ever felt came over me & was uncontrollable. I refused to push, even though I had faith that God could heal her, I knew He was choosing not to, a mother knows. I kept yelling “No, she will die” over & over! I finally calmed down enough to bring my daughter into the world at 11:30pm Jan 11th.
Makenna, baby with anencephaly
The room was quiet, the nurse gave my husband the signal he asked for if she did have it. There was no sound from her. The nurse came to my bedside, with tears rolling down & said, “She doesn’t have her brain, I am so sorry.” I guess I blacked out or something because the next thing I remember was her in my arms. I was so scared when I first seen her, I kept telling her how sorry I was & rubbing her little chin. My heart was filled with a complete unconditional love for this beautiful child, she had her daddy’s blue eyes, his nose & my lips. I lifted the blanket to make sure she was a girl, that seemed to give a few in the room a giggle. I was so afraid to see the top of my baby’s head that I allowed others to get my baby dressed, I regret that because I don’t know what her little feet looked like, her bottom, back, belly & only caught a glimpse of her legs. She had on the outfit her daddy & I picked out, of course it was pink. She was wrapped in the beautiful blanket my mom made her with a white hat that had to be pinned to fit her tiny head. She was breathing pretty good in the beginning but wasn’t moving much.

Our oldest was let in to see his sister, he was the proudest big brother ever. He got to hold her hand & talk to her. I explained to him that Jesus would take her soon to fix her head, he said, ”ok mommy” but was still in awe of his baby. Daddy was able to hold her & fell in love immediately. She amazed us by grasping our fingers, looking around the room & the many many smiles she gave us just blessed our hearts so much.

Many people came to see her, anyone that wanted to was allowed to hold her. I don’t remember much that went on in the room that night, I don’t remember people that came in to see her, but they have told me they were there & how beautiful she was. I was so focused on her that I blocked everything else out. Several hours went by & many went home. Bob & I were left alone with her. We passed her back & forth. Then while daddy was holding her she let out a very loud cry!!! We were amazed because we thought it was impossible, the nurse came in quickly & said, “Did I hear what I think I just heard??” I shouted, “yes you did!!!” I was so astonished by her ability. A little while later she started having difficulty breathing & would pause longer between each breath. We were not ready to let go of her yet, so we blew on her & she would take a deep breath in & be ok for a while. She started spitting up fluid, I didn’t know at the time but she was going into respiratory failure. The nurse told the family & friends still in the waiting room it wouldn’t be long, so they all came in one last time to say goodbye. We were left alone one last time, she started to have a real hard time breathing & I knew it was time to let her go, as much as it was ripping my heart apart, I couldn’t see her struggle anymore. We didn’t blow on her anymore & just watched her peacefully drift into Jesus’ arms. She passed away in her daddy’s arms at 4:43am on Jan 12th. I took her from him & held her so tight & cried so hard, my baby girl was dead!!

We had a small graveside service for her, many friends & family came to show their love & support for us & our baby girl. My Dr cleared his schedule so he could attend, that meant a lot to me, she wasn’t just another delivery to him, she changed him as well. My dad sang Amazing Grace. We had several pink balloons with her name on them that were released after her service.

The first year was the hardest after her death, I was very angry. I was angry at God for taking my daughter. In Sunday school the subject of Jesus bringing a little girl back to life came up. Well I lost it in class, I couldn’t hold my anger in any longer, I was able to pretend until then. I let my true feelings be known. People began to pray for me & it was then I began my very long road to healing. It has been a rough road to get to where I am today. We moved on with our lives & had to find a new “normal” without our daughter. We tried a support group, but that just made things worse. We were struggling coming to terms with what happened. Family & friends seen we were having a hard time & did all they could to help us. In time I came to understand that God did not do this to us or her, but He carried us through it, He was always there, I just couldn’t or wouldn’t allow myself to feel His love & comfort. When I allowed God back into my heart, I started to see things differently. I started to see how He was able to use Makenna’s life to change the lives of others. My sister, Vickie, told us after Makenna passed how she didn’t believe in abortion anymore because of her niece. My doctor viewed these babies completely different now & knows he can let women know they have the option to carry their baby to term. Yes the experience with my daughter was very traumatic for me & my husband but the way she changed our lives & the lives of so many others was worth every tear. I am proud of the choice I made to carry my daughter to term, I am proud God chose me to be the mother of one of His precious angels, I am proud of my daughter!!!

Many years have passed since we lost Makenna. Our boys are now teenagers, our oldest remembers his sister very well. He wrote a poem many years after her death. I think he was around 11. I’m not changing a thing, sharing it as is, it means so much to me:

To Makenna:
Makenna, baby with anencephaly
In the spring of ninety-nine
everything seemed to be fine.

My mother was to bear another child
She was so happy she almost went wild.

But then came a day of fear
when bad news she had to hear.

Something had gone wrong
and you was to not live very long.

One day she did see
something that wasn’t supposed to be.

While inside her womb, you did kick
even though the doctor said it was impossible for you to kick.

This was a sign of hope
for she thought God was telling her to no longer mope.

Then in the first month of the new year
the time had come for you to be here.

The day seemed dull
as they prayed for a miracle.

When the time came for your birth
it was the saddest sight on earth.

All hope was gone
it was like the world’s most depressing song.

Even though you came into this world alive
we all knew you wouldn’t survive.

You let out a scream so loud
and mom and dad wondered how?

Even though you would die
God let your mommy hear one cry.

I held your hand
though I was five and couldn’t understand.

About six hours had past
before you breathed your last.

You went to a place far away
how far I cannot say.

Even though I miss you greatly
to see you, I may have to wait till I’m eighty.

But for little time on this earth
many will never realize what it’s worth.

Some call where you live heaven, where you are always free to roam
but to you, it’s always been your home.

For you to come back to us, there is no way
but wait! I have one more thing to say.

Jesus promised eternal life to those who obey
and I promise we will be there with you someday.

Love, your big brother

5 1/2 years after we lost Makenna, we welcomed a healthy baby girl into our family. I can’t help but praise God for “unanswered prayer”. Makenna was supposed to be our last baby, I begged my doctor to tie my tubes after she was born but he refused. Now when I look into the eyes of my 7 year old daughter, I am thankful to her sister. I wouldn’t have her if it weren’t for my sweet Makenna. Praise you Jesus in the good times & the bad. It is with a thankful heart that I will always remember my little girl with, thankful to see her smile, feel her grasp & hear her beautiful voice. So thankful for this precious gift I call my daughter.

Monday, May 20, 2013

Emery's Story, by his mama

Post by Ashley

June 21st 2012 I went to the doctor, scared to find out that the reason my hormones were rising was because I had a form of cancer and would be needing chemo. It was a stressful few days since getting the news that my HCG levels were 20,000 from the 2 which is was last month. I had been monitored regularly since January when I had a molar pregnancy, if it came back on its own it meant I would be needing chemo. Imagine my surprise when the ultrasound showed a baby, instead of the cancer!! As the doctor left the room telling me I was 6 weeks and 5 days pregnant I began to dance around the room. I didn't need chemo and I was giving my 4 year old a sibling, what GREAT news! I called my family and told them, it isn't the molar pregnancy, it is "a normal pregnancy" little did I know how far from normal things would be.

My pregnancy went along normally and I was so thrilled to share the news with my daughter. As time went by I had no reason to believe anything was wrong. I listened to my baby on a doppler we rented and about 13 weeks I began feeling "flutters"(the baby first moving). I knew my baby was in there safe and sound and growing well. At 18 weeks I had a doctors appointment, which I had scheduled for our 3rd wedding anniversary. I begged the doctor to tell us the sex of the baby and she reluctantly gave us an ultrasound. There was my bouncing baby doing the splits! We got such a strange view but she said she thinks it is a boy, but is still earlier then she likes to tell, so wait until my "official" 20 week ultrasound to make the announcement. I knew what I saw though, it was definitely a boy, weird angle or not! I was so happy I have always wanted a son and he would be the first grandson on either side!
The following week I got a phone call from the doctors office. It wasn't a normal thing and I frantically tried to call back! I didn't get ahold of anyone so I called again first thing the next morning. Finally I got a call back, she said my regular doctor was out of the office but it looked like she was calling about test results. She said that the blood test I had done came back abnormal. It meant my baby was at risk for having a brain or spinal defect. She told me not to worry because it was only 70-80 percent accurate and it could still be nothing, and scheduled an ultrasound for that night. I hung up the phone and panic sat in. The previous week I had done a blood test to check for down syndrome, I had forgotten about it because I figured it was a waste of time. I honestly had no idea they checked for anything other then down syndrome and I frantically began researching. I called my parents and in laws and told them and they all came down for the ultrasound.

That night I brought my daughter to my grandparents and left her with them and my brother and the rest of us headed to the doctors office. We get there and get back into the room, I am watching the screen as the doctor looks down the spine of my baby, nothing looked weird, so I am thinking ok it isn't spina bifeda. The room was silent and I asked, can you tell if its a girl or boy? trying to break the silence. He said I think its a boy, but I am having a hard time seeing his head. Thats when I saw it. I had looked up ultrasound pictures of all the things that could show us as a brain or spinal defect. My son looked exactly like the other ultrasounds of anencephaly babies.

The doctor ended the ultrasound and said I am sorry to tell you, I think your baby has anencephaly. I knew it, I instantly felt like it was hard to breathe. How is it that something I had never heard about 12 hours before suddenly be throwing my whole life into a tail spin? My mom was the first to speak, she said "what exactly is that?" I turned around and said it means he is going to die. Everyone started crying. Looking back I probably shouldn't have been so blunt about the way I said it, I just didn't know how else to do it. My husband was the only one dry eyed, holding me tight, but I could see the fear in his face. They set up an appointment with me for Monday the following week with a specialist (this was Thursday).
At the appointment with the specialist we all went into a small office where a nurse did an ultrasound. She looked at every part of him and made sure his whole body worked correctly, it was so hard to know that everything was perfect and worked exactly right but his skull was missing and he would die! After the ultrasound we went into the doctors office. He told us most likely it was caused because when his skull was growing it didn't close for some reason and the amniotic fluid had crushed it, which then prevented his brain from growing. I told him we decided to carry him to term and the doctor told us he may not make it to term, and if he did organ donation wouldn't be possible because they cannot legally declare anencephalic babies brain dead. It didn't matter, I wanted to love my son, hold him kiss him and see his face!

The rest of my pregnancy was spent enjoying our time with him. We had 3d ultrasounds, painted my belly, and took maternity pictures. We talked to him and loved him. I ate the foods that would make him wiggle most and every morning I spent quietly listening to music, just him and I. He had the hiccups a LOT, it was hilarious! My pregnancy with him was wonderful. Holiday's spent while I was pregnant became Emery's holidays. Halloween he got his own pumpkin, Christmas he got his own presents. We knew those would be his only holiday's with us so we made sure to include him and to make them extra special.

Also during my pregnancy I had an "angel shower". I asked everyone who came to bring poems, or letter or songs, anything they felt applied and we worked on scrapbook pages for him. It was one of the most amazing thing I can hold onto from that journey, is pages made from family and friends, it is beautiful.
Another part of my pregnancy with Emery was spent planning for his death. Most people stalk up on baby things and get a nursery ready, I spent my time finding burial gowns, the clothes he would wear during his time with us. Speaking to funeral homes and finding an urn. It was such a sad thing to do while feeling my otherwise healthy baby boy bouncing around!! In a way though I am thankful. I am thankful to have had time to grieve while he was still here to talk to and to squeeze. I think preparing while I was pregnant helped me accept the reality of saying goodbye.

February 9th was my due date. I talked to my midwife about inducing me though. Some of the time mom's of anencephalic babies do not go into labor on their own. Plus I liked that I was able to plan ahead so all of our family could be there, since we had no idea how much time we would have with him. My midwife set my induction for February 4th, but wanted me at the hospital at 11 pm the night before. 61 and a half hours after my contractions started my son Emery was born. February 6th 2013 at 11:55 am. He was born with his heart beating but never took a breath. His strong little heart continued to beat for 11 more minutes. We were able to spend the whole rest of the day with him. Family got to hold him and we took tons of pictures and got handprints and footprints along with other keepsakes. 11pm that night the nurse came in and told us she had to take him. Normally I would have had as much time as I wanted, but we were surprised to have found out we were able to donate his heart valves! In order to be able to do the donation 11pm was the latest he could stay with us. When the nurse walked out of the room with him my husband went to hug me and ended up catching me because I would have collapsed on the floor. Letting my son go that night was the hardest moment of my entire life. I enjoyed every second I spent with him and suddenly it was over.

The 8th, we went to the funeral home. We filled out all the paperwork and then got to see him one last time. We dressed him is his specially made gown, made from part of my wedding dress. And my husband tied on a tie, which was the tie he wore at our wedding. Emery looked so handsome in his suit and tie. We each held him one last time before we put him back into his bed (they had a special Moses basket bed for him).

I miss my son every day of my life. He taught me about life and love and I am so thankful for his life. Carrying him to term was the best decision I ever made. I got to see my son, hold him make him a part of my life.

Emery Iris born February 6 2013

Friday, May 17, 2013

Lily's Story, by her mama

Post by Naomi
Here’s the story of a very special baby that changed me forever.
December 4, 2012, I decided it was time I took a pregnancy test.  I don’t know to this day how I ended up pregnant with our 6th child.  I was shocked and wasn’t so sure I would have planned a baby right then, having a baby born in July was not something I would have planned on purpose! Another baby was definitely part of what I had envisioned for the future, but not now.  I had always liked to believe that I had control on things.  That same evening, I thought I was miscarrying, and to everyone’s relief, the baby hanged on.  How stupid I felt about all those silly worries I had.  What could have been more beautiful and miraculous than a new life growing in my womb?  Nothing was more important and precious than this new addition in our family.

I lose no time to come up with the perfect way to announce to family and friends our new family member to be born.  On our family Christmas card there is a picture of my children along with a picture of the positive pregnancy test…we were not the only ones surprised!

I was still nursing my 2 year old and weaning him before his third birthday was not what I had been wishing for.  All my other babies that were still nursing when I got pregnant weaned themselves at about 16 weeks into my pregnancy probably due to the milk not coming in anymore.  But this time I decided I would try to nurse all the way and breastfeed both the baby and my toddler once he would be born, it was now or never!

At my 12 weeks appointment with my mid wife, we listen to the little heartbeat, she found it quickly which calmed down my fears…  I had been spotting on and off and I was very nauseous and tired.

 “Morning sickness” and fatigue were still intense even after 17 weeks.  Also my belly was tenderer when I touched it compared to my other pregnancies.  I was still worrying about everything being normal and healthy.  I was beginning to think to myself that this might indeed be my last baby.

At 21 weeks, on March 20th 2012, it’s our fun ultrasound appointment!  I would see my baby and get to have and share with everyone a picture of my baby!  This was the main reason I was excited about the ultrasound.  Deep down, I was still worried.  I should have known something was wrong when the technician didn’t spend as much time as usual with us and complained the baby was not in a good position.  We could see the heart beating, I figured she was new and needed help and once again tossed my doubts in a tiny corner in my mind.  Then I heard the ugly words: “incompatible with life”.  This could not be happening, surely, they had made a mistake!  These words take me back to the day my whole world was shaken, everything I knew, I didn’t know anymore and everything I didn’t know, I was about to start learning…  We were immediately told we had options.  Options?!? As if my baby’s heart had the option to beat or not to beat!  I would carry my baby; I was not the one who had performed the miracle of putting this little life here on earth, I was not the one who had the right or the privilege to take that life away!

We were first told that my baby had water everywhere in her body, especially around her neck and in her abdomen and this could be associated to Trisomy 13.  The report also mentioned that amniotic fluid was absent.

Even after this fatal prenatal diagnosis, we didn’t want to know the gender of the baby.  This little one was a precious gift from God; we would discover this special gift when he/she would be born.

“In everything give thanks; for this is God’s will for you in Christ Jesus.” 1 Th 5:18. 

This was the Bible verse that God put in my heart while I couldn’t stop sobbing on our way back home.  So, I did, I thanked God for my baby.

How would we be able to tell the kids?  I knew I was about to break their little hearts, they already loved their new baby and they couldn’t wait for him to be born.  Death and sickness is a part of life here in this beautiful but shattered world.  But not us, this was not supposed to be part of our lives!  We explained to our children that the baby was very ill and that doctors said he/she wouldn’t live.  But we also told them that we had faith in the Greatest Healer ever, Jesus.  While here on earth, Jesus had healed the blind, he had given life back to a little girl.  (Mark 5:35-43) God had created man from dust; surely our God was big enough to heal our baby in my belly.  Even if everything seemed hopeless and impossible, we knew that if God’s perfect plan for our family was to heal our baby, Jesus would heal her.  “Nothing is impossible to God” Luke 1:37.

My husband left later to go to work that day.  I couldn’t bring myself to talk to the kids.  To watch them cry when they understood the harsh reality that their baby brother or sister had so little chances from the medical point of view to recover and live, still breaks my heart to this day when I think about that moment.

I lost no time finding a girl and a boys’ name.  My baby needed a name.

Only a few days later, I have a placenta detachment.  I go to the hospital to make sure everything is not worse than I’m thinking… The doctor is not concerned and sends me back home while making sure I am getting a follow up as soon as possible with the high risk pregnancy unit.  At our first appointment there, this is where we learned what was truly going on with our baby.  My baby has Cystic Hygroma and Hydrops and doctors say that it is probably Turner’s syndrome.  We could clearly see this time the liquid that had accumulated on the back of her neck.  If I chose to believe in this explanation, this would mean my baby was a girl (only girls have this syndrome), so I decide not to think about it too much but to Google it anyway.  Hey, I found hope there!  Babies like mine had completely recovered in their mother’s womb, they were alive and healthy!  We already had faith and had chosen hope…  Our God was Almighty and was able to heal our baby!  All these amazing stories gave me a hope that I could almost touch.  I am still thankful for the mothers of these miracle babies that took the time to write down their journeys and share them.  All of this being said, I still had this gut feeling in the back of my mind that I also should prepare to lose my baby.   So I tried to prepare to give birth to a silent baby or a baby that wouldn’t live for long.  I also started thinking about making a memorial video.  We took photos; my kids who had asked to draw on my belly would draw beautiful pictures for the baby.  I didn’t want to lose a single moment of bonding with my baby, I would rock her, sing songs and talk to her, I would tell her I was here for her , I wouldn’t give up on her, she was not alone, God was also in control and it was ok if she had to go.  A sweet friend also reminded me that God would heal my baby; He would heal her here in my womb or in Heaven.  My children who were feeling the uncertainty and the sadness also could trust that God would heal our baby, our prayers were not useless.

On a Thursday evening, at 24 weeks, I was hospitalized, my placenta was detaching and to prevent any complications for my health, I was put on bed rest.  I remember falling asleep that night and thinking: “This baby is a fighter, his heart will never stop.”  Easter was in 3 days, we had a couple family meals planned along with the usual egg painting and hunt.  I was used to be surrounded by my children; I was alone and felt so miserable!   The other pregnant woman with whom I shared the room was NOT happy to share (with me or anyone), I was on the other side of the curtain, and she had the window side.  Being on bed rest was very complicated for my family but I learned I had to trust my God; “Depend on the Lord; trust him, and he will take care of you.” Psalms 37:5.   I had to have faith that being on bed rest for a baby that was more than likely to die was worth it.  I had a wonderful nurse who found me another room with a beautiful mother that would share her room with me on Friday night.  I remember thinking it wasn’t so bad after all, staying there wasn’t so bad!  A friend to talk to, no meals to prepare, I could finally rest a bit.

Nurses would listen to my baby’s heart twice a day.  Friday late in the evening, I was already asleep and she asked me if I wanted to listen to the heartbeat and I said no, this could wait till morning.  So at about 7 in the morning, the cold jelly and the Doppler on my belly we hear nothing.  I didn’t show any emotions right away, just a timid awww, but my heart was in thousands of pieces.  A doctor checked with an ultra sound.  About an hour later I called my husband and sobbing I told him our baby was gone.  A few hours later my husband and my children came and they did another ultrasound before I was induced.

I had wished for my children to come back and meet the baby, I was hoping to take pictures of our family, of my children with this small baby they would only really meet one day in Heaven.  My sister arrived just a few minutes before I gave birth, I wanted pictures so badly and she was here to take some for us!

Lily Hope, our precious daughter, was born in Heaven at 1:26 on Easter morning, April 8, 2012.  We had the privilege to hold and appreciate our baby girl in our arms.  I can still feel this sensation on this part of my body and I think it will never leave me.  My children never met their sister, the damages caused by edema were too important but pictures of Lily are everywhere in our house now.

The only thing my baby girl Lily ever knew here on earth was our love in my womb, she is Home waiting for me.  She is healed, safe and well. (Ap 21:4)  Lily was not a mistake or a fluke, she is a blessing and a gift from God.  I miss Lily every day, here on this side of Heaven.
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