All Newborns / Diagnosis // The SBD® Doula

A Brave Girl

July 15, 2015 by Heidi Faith Leave a Comment

Told by: Sara

At twenty weeks my husband and I took our two oldest to the ultrasound to find out if they were going to have a baby brother or baby sister. Well to our surprise and joy it was twins a boy an a girl.

We were so happy they set up an appointment with a parineonatologist but didn’t say we needed to be any more concerned as I am high risk but everything was playas far as they could tell/see. My next appointment the world ended for me. I had decided I would go alone and for some reason I left my phone in the car too. After the ultrasound they had me go to one room then another and then I was lead to the doctors office.

The good news baby a (boy) is fine nice size healthy but baby b (girl) was VERY small, had bowing in her long bones and fluid was showing on her brain. The most concerning was the small stature and the bowing of her long bones. They were confidant with a diagnosis of a form of dwarfism. What kind they were not 100% sure of but they beloved it to be fatal. My heart sank I felt like I was falling and endless fall and no one was there to catch me it even make me breathe.

My next questions are how do we find out for sure or at least narrow it down there were some blood tests but more than likely to get the answers we NEED we needed to do a amniocentesis. I said okay lets do it now then so we’re not waiting around. So after the nurses, the technicians, the doctor and the genetic counselor tried to get me to wait till my husband could be with me I said no we are not letting a day go by that we could be doing something.

Afterwords getting home I remember my oldest was still a school my youngest was sleeping the sitter left I remember her looking at me like she wanted to ask if I was okay but knowing I wasn’t. I sat alone not knowing what to do and my husband walks in the door his smile went away almost as fast as my tears welled up in my eyes. I showed him the ultrasound pictures from that day and went over the details I the visit and we cried together. I remember us deciding not to tell anyone but my supervisor at work. Mostly because I was going to be seeing the doctor a lot more and we didn’t really know what was going to happen and or when.

We just knew that we needed to pray. That was the only thing I was capable of at times.

As doctor appointments came and went our little bundles of joy were there kicking moving hearts were beating. Our little girl stopped growing at one point (about 26 weeks) and we were given the opportunity to intervene but if we did both would have to be born they couldn’t just take her. This put our baby boy at extreme risks of prematurity as well.

And there was no guarantee that baby girl would even take a breath. But if she did she would be in pain and so would baby boy. This was something I could not do to either of my precious babies. To put them in pain on purpose just so I could have the opportunity to hold her seemed too selfish.

More doctor appointments came and went and her heart beat was still there she was tiny but hanging in there. Then she stopped making amniotic fluid. Not good but we are so close to 32 weeks where we would intervene. But she was hanging in there still 30 week mark came and she is still with us!!

Joy sheer joy I am going to meet our little girl. Time to have shots to have lungs develop etc. we went into over drive getting things we put off because we were too afraid to. The appointment came to have my first shot 31 weeks and one day. The started that appointment with an ultrasound and always did baby boy first so it was no different until the tech had to go get my doctor right then and there. He had come in and the tech went up on the upper left side of my Tummy where baby girl liked to hang out and there was no heart beat.

Tears lots of tears. The silver lining was that baby boy was not being affected and he was still on track looking good and healthy. I now had more doctor appointments. Explaining to our boys that only one baby was going to come home with us. Explaining that to family and friends. Two things were constant in my life at that point lots of tears and lots of prayers and those thing remained as constants.

On May 14 2014 my babies were born my boy came in screaming making his precious life be known. While my baby girl was silent. I could have heard a pin drop in the OR room. I believe my baby girl had a purpose in her short time with us.

She helped us turn to God when things get tough. We were able to find community within our church that we had just started going to in November. The tears and prayer have remained constant in our lives and even tho I would have loved to hold my baby girl take her home and out her in pretty pink dresses. I have my wonderful husband, my fantastic boys now 3 of them, a wonderful relationship with my church family. And I was able to say I am worthy of being a child of God. And without my baby girl I would not have the last two things in my life at this point. She is already out to rest and her memorial service is coming up and I plan on honoring her little life as much as I can. By being the best mom to my boys, the best wife to my husband and the best daughter of God that I can be.

Filed Under: 31 weeks, All Multiples, All Newborns / Diagnosis

Scarlett Grace’s CDH Story

July 15, 2015 by Heidi Faith Leave a Comment

Told by: Cary

shared with permission from Cary’s blog

Scarlett Grace

On June 27, 2013, we found out we were pregnant, due March 2, 2014. We had just moved, via military orders, to Germany and decided we wanted another baby. Scarlett’s older sister was only 11 months old when we found out we were expecting again. Although we were trying to conceive, we didn’t expect it to happen so quickly. None the less, we were ready to start our journey with two under two, once baby number two arrived. We were excited, nervous, and anxious to meet our new baby. The pregnancy was a breeze. On October 15^th, we found out we would be having another girl. Just like her older sister, she looked just like their dad. I could tell she would be much different than her big sister. While I was pregnant, she was over the top energetic most of the day, and even a bit feisty when daddy would try to feel her kick and move. The pregnancy progressed well, with a thought that I had too much fluid, which at thirty-two weeks got us another ultrasound. Everything turned out just fine, and baby was so beautiful. After long consideration, we decided Scarlett Grace would be her name, and when we met for the first time, we knew it was the perfect choice. We were to decorate her room in turquoise and pink. We had everything we needed, ready for her arrival.

At 1:30 a.m. on Monday, February 24, 2014, I was lying in bed awake, as I couldn’t sleep with a feeling that it was just about time. Suddenly, my water broke. Excited, nervous, anxious, tired and many other emotions were running through us as we got ready to head to the hospital to meet our baby girl. Labor was quick. At 4:58 a.m. Scarlett Grace Roberson made her entrance to the world. They laid her on my chest and she stared into mommy’s eyes. They suctioned her, she tried so hard to cry, but couldn’t. That’s when we knew something wasn’t right. Near the end of my pregnancy, I was haunted by the thought of death. Not towards Scarlett specifically, but I couldn’t shake the bad feeling I had, and just chocked it up to hormones and anxiety over having a new baby in the house. During labor, when I got my epidural, the name of the anesthesiologist was the same as a person at one time in our lives, who was pretty horrible. When he walked into the room, my heart sank, and I knew something was wrong. Never in my wildest dreams would I have imagined what was about to happen. Scarlett was taken from my arms and intubated in the delivery room. She was then rushed off to have an x-ray to see what was going on; why she wasn’t able to breathe on her own. When they knew what was wrong, they came back to tell us she had a right-sided congenital diaphragmatic hernia. I had never heard about this condition. My husband, who is an LPN had only briefly heard of it, but didn’t know much. They went on to tell us that she was critical, had a decent chance of surviving, but that she would have to be transferred to another hospital that was equipped to deal with her situation. Our friend who worked in the NICU, put calls out for prayers. People from every inhabited continent were praying for our baby girl.

After what seemed like forever, traffic was horrible, the transport team arrived to take baby Scarlett to the new hospital. We were told we weren’t allowed to go with her in the ambulance. The hospital discharged me immediately so that my husband and I were able to go be with her. The hospital was an hour away, and the drive, again, seemed like forever. When we got to the hospital, we found where Scarlett was and got to see her finally. She was hooked up to many tubes and machines, and after our first daughter spent her first eleven days in the NICU, we weren’t too overwhelmed or intimidated by what we saw. The doctors then came in to tell us they were about to start the hour and a half long process of the ECMO surgery to get her strong enough for her repair surgery. After the surgery, the doctors called us back to her room. They told us that the ECMO surgery was successful. They also told us at that point, that her chance of survival was 70%. Since both of her ultrasounds, including the one at 32 weeks were completely normal looking, they said there was a good chance that her lung tissue was probably developed up to at least 32 weeks, which meant that if she made it through the surgery, she’d have a relatively short NICU stay and would get to go home with us after that. They added though, that the next hours were critical, so be prepared. After hearing that the surgery was successful, and the odds were in her favor, we started feeling hopeful that we would make it through this. However, shortly after, they found a bleed in her belly. When she was getting the chest tubes inserted when she couldn’t breathe on her own at birth, her liver was punctured, and was bleeding badly due to the Heparin used to thin her blood for the ECMO process. They had to add clotting factors back to her blood to try and stop the bleeding. They told us it would be a little while to get it stopped, but they were managing it. Adding clotting factors back in to her blood came with its own set of risks, though. We were now having to be cautious of brain bleeds, which is a common problem seen with the ECMO therapy.(Scarlett Grace)

It had been a long day, we were hungry, tired, and anxious. We went to get a hotel room on the hospital grounds so we could stay close. Some friends came to visit us to show their support and help us in any way they could. We went back Scarlett’s room to see her one more time before we would head to bed for the night. The doctor’s told us they would call if anything went wrong during the night. After getting settled into our room, we went to sleep. We slept through the entire night, with not a single phone call. When we woke up and realized this, we were ecstatic. There were no problems through the night. We hastily got dressed and ready to go see Scarlett. When we arrived at her room, the doctors were preforming an ultrasound on Scarlett, which we were told was just a normal check that they do, and changing shift so we waited outside. When we went in, they told us everything went well through the night, but that the ultrasound they were just performing, may have shown a spot in her head. They couldn’t really tell what it was if it was anything. They said they would have to do a more detailed scan. We were told that we could stay in the room as long as we wanted. We hung out in the room with Scarlett for a while, then went to get some breakfast. When we returned, we got horrible news. Scarlett had bleeding between her brain and skull, and with the clotting factors they were adding to stop the belly bleed, the blood around her brain was now clotting as well. The doctor told us that the team of doctors would have to discuss what our next move was. The team wasn’t all there so we had to wait a couple of hours. We called our friends to tell them the news and they were there shortly after, so we went to find lunch while we were waiting on the doctors. While having lunch, we got a phone call from the doctor, telling us that they were ready to discuss with us what was going on as far as progress, and what we were to expect at this point. When we showed up they took us to a conference room to tell us what was going on. The doctors looked solemn; were quiet, and we knew what they were going to tell us. The doctors explained that, had we known about her condition before her birth, Scarlett would have probably had a different outcome. They were hopeful that she would make it, but the belly and head bleeds were not problems they expected to face. Ultimately, because of the brain bleed, the ECMO had to be stopped. They informed us that they had tried lowering the amount of support she was getting by a very small amount, but she couldn’t handle it. They told us she would die once we took her off of the machine. They would be doing the surgery to remove the ECMO shortly after, once the surgeon arrived.

When the procedure was done, we got to go in to the room and hold her for a little while before they would turn off the oxygen she was receiving. Once we were ready, they turned off the oxygen, and we watched her pass, so peacefully at 3:45 p.m. on February 25, 2014. The doctors had a leave briefly to clean her up and remove the rest of the tubes she was connected to. When they called us back, we got to bathe and dress her to get her ready to go to the mortuary. Then we got to stay in the hospital chapel with her for a few hours until it was time to leave. The following week we held a viewing for our friends, and a memorial at the church we attend. The next weekend we flew home to the states to have a funeral and bury her next to her grandmother. Our friends, family, and church family helped us so much during this time, by watching our older daughter and helping us in any way they could, really making this stressful time, much less stressful. We are moving forward, and hope to be able to raise awareness to others by sharing Scarlett Grace’s story. Her life was short, but had so much meaning. We believe in Christ with all of our hearts, and that’s all her life was about. She brought a world to their knees in Jesus’ name. We love and miss her more than we can say, but we know her short life was for a beautiful purpose, and we couldn’t be more proud of what she accomplished.

Filed Under: All Newborns / Diagnosis, Military

Scarlett Grace

August 29, 2014 by Heidi Faith Leave a Comment

This is shared with permission from it’s original source, which you are invited to visit: Scarlett Grace’s CDH Story

Told by: Cary

Scarlett Grace

At 1:30 a.m. on Monday, February 24, 2014, I was lying in bed awake, as I couldn’t sleep with a feeling that it was just about time. Suddenly, my water broke. Excited, nervous, anxious, tired and many other emotions were running through us as we got ready to head to the hospital to meet our baby girl. Labor was quick. At 4:58 a.m. Scarlett Grace made her entrance to the world. They laid her on my chest and she stared into mommy’s eyes. They suctioned her, she tried so hard to cry, but couldn’t. That’s when we knew something wasn’t right. Near the end of my pregnancy, I was haunted by the thought of death. Not towards Scarlett specifically, but I couldn’t shake the bad feeling I had, and just chocked it up to hormones and anxiety over having a new baby in the house. During labor, when I got my epidural, the name of the anesthesiologist was the same as a person at one time in our lives, who was pretty horrible. When he walked into the room, my heart sank, and I knew something was wrong. Never in my wildest dreams would I have imagined what was about to happen. Scarlett was taken from my arms and intubated in the delivery room. She was then rushed off to have an x-ray to see what was going on; why she wasn’t able to breathe on her own. When they knew what was wrong, they came back to tell us she had a right-sided congenital diaphragmatic hernia. I had never heard about this condition. My husband, who is an LPN had only briefly heard of it, but didn’t know much. They went on to tell us that she was critical, had a decent chance of surviving, but that she would have to be transferred to another hospital that was equipped to deal with her situation. Our friend who worked in the NICU, put calls out for prayers. People from every inhabited continent were praying for our baby girl.

(mommy holding Scarlett at birth)
After what seemed like forever, traffic was horrible, the transport team arrived to take baby Scarlett to the new hospital. We were told we weren’t allowed to go with her in the ambulance. The hospital discharged me immediately so that my husband and I were able to go be with her. The hospital was an hour away, andthe drive, again, seemed likeforever. When we got to the hospital, we found where Scarlett was and got to see her finally. She was hooked up to many tubes and machines, and after our first daughter spent her first eleven days in the NICU, we weren’t too overwhelmed or intimidated by what we saw. The doctors then came in to tell us they were about to start the hour and a half long process of the ECMO surgery to get her strong enough for her repair surgery. After the surgery, the doctors called us back to her room. They told us that the ECMO surgery was successful. They also told us at that point, that her chance of survival was 70%. Since both of her ultrasounds, including the one at 32 weeks were completely normal looking, they said there was a good chance that her lung tissue was probably developed up to at least 32 weeks, which meant that if she made it through the surgery, she’d have a relatively short NICU stay and would get to go home with us after that. They added though, that the next hours were critical, so be prepared. After hearing that the surgery was successful, and the odds were in her favor, we started feeling hopeful that we would make it through this. However, shortly after, they found a bleed in her belly. When she was getting the chest tubes inserted when she couldn’t breathe on her own at birth, her liver was punctured, and was bleeding badly due to the Heparin used to thin her blood for the ECMO process. They had to add clotting factors back to her blood to try and stop the bleeding. They told us it would be a little while to get it stopped, but they were managing it. Adding clotting factors back in to her blood came with its own set of risks, though. We were now having to be cautious of brain bleeds, which is a common problem seen with the ECMO therapy.(Scarlett Grace)

It had been a long day, we were hungry, tired, and anxious. We went to get a hotel room on the hospital grounds so we could stay close. Some friends came to visit us to show their support and help us in any way they could. We went back Scarlett’s room to see her one more time before we would head to bed for the night. The doctor’s told us they would call if anything went wrong during the night. After getting settled into our room, we went to sleep. We slept through the entire night, with not a single phone call. When we woke up and realized this, we were ecstatic. There were no problems through the night. We hastily got dressed and ready to go see Scarlett. When we arrived at her room, the doctors were preforming an ultrasound on Scarlett, which we were told was just a normal checkthat they do, and changing shift so we waited outside. When we went in, they told us everything went well through the night, but that the ultrasound they were just performing, may have shown a spot in her head. They couldn’t really tell what it was if it was anything. They said they would have to do a more detailed scan. We were told that we could stay in the room as long as we wanted. We hung out in the room with Scarlett for a while, then went to get some breakfast. When we returned, we got horrible news. Scarlett had bleeding between her brain and skull, and with the clotting factors they were adding to stop thebelly bleed, the blood around her brain was now clotting as well. The doctor told us that the team of doctors would have to discuss what our next move was. The team wasn’t all there so we had to wait a couple of hours. We called our friends to tell them the news and they were there shortly after, so we went to find lunch while we were waiting on the doctors. While having lunch, we got a phone call from the doctor, telling us that they were ready to discuss with us what was going on as far as progress, and what we were to expect at this point. When we showed up they took us to a conference room to tell us what was going on. The doctors looked solemn; were quiet, and we knew what they were going to tell us. The doctors explained that, had we known about her condition before her birth, Scarlett would have probably had a different outcome. They were hopeful that she would make it, but the belly and head bleeds were not problems they expected to face. Ultimately, because of the brain bleed, the ECMO had to be stopped. They informed us that they had tried lowering the amount of support she was getting by a very small amount, but she couldn’t handle it. They told us she would die once we took her off of the machine. They would be doing the surgery to remove the ECMO shortly after, once the surgeon arrived.

This is shared with permission from it’s original source, which you are invited to visit: Scarlett Grace’s CDH Story

Filed Under: All Newborns / Diagnosis, Military

He Can Do God’s Work Even Faster

March 14, 2014 by Heidi Faith Leave a Comment

Told by: Sarah

My heart is at peace and also saddened all at the same time……..

Our hope for this Mother’s Day was to shout some happy news, but instead our news is not so happy. On March 4th, I found out that my husband and I were expecting another child. All seemed to be going well, and we went to the doctor last Friday.

First stop was the ultra sound. Our first 100% confirmation of this little life being formed inside me was evident, but what was not, was movement. The ultrasound tech didn’t say much of anything, just sent us back to the doctor’s office.

We patiently sat awaiting any news. The doctor came in and was friendly, but she got straight to the point. What we were there for….Was our baby healthy and alive? Although we had hope that it was, much to our disappointment, it was not. The baby stopped developing at 11 weeks and I was 13. There was no heartbeat. She reassured us there was nothing we did wrong, maybe the doctors weren’t 100% accurate and they make mistakes, but to her it seemed hopeless.

She gave us a few minutes to process and came back in with news from another doctor. “It is hopeless, the baby is gone.” What a dagger to the heart.

And yet peace swept over me all at the same time. I immediately knew right where my baby was….In the arms of my Savior and Lord. He WAS healthy and alive!

The doctor gave us the options of allowing the actual miscarriage to take place at home, they could give me medicine to speed up the process or they could put me under and perform a procedure to clear out my uterus. I knew there was no way I was going to MAKE this happen. After all, my God is a God of miracles and He can do anything should it be His will. After a week of more evidence of the life inside me losing the battle, I began cramping and bleeding Thursday night.

I knew the miscarriage was iminant, but the cramping stopped and I was able to sleep through most of the night. I woke yesterday morning feeling good. I got up and started doing my normal morning routine. I got my girls up and we started the day. After moving around, things started up again. And by 11 am, my fear was becoming a reality. Trying to stay strong and put on a happy face for my girls while going through pain and knowing what was about to happen was so hard. I was able to get the girls fed and put down for their nap and come 1:00 pm, things were rapidly happening.

My mother in law was able to come help with the process and about 3:45 pm, the life that was once inside me, no longer was.

An instant wave of grief swept over me as we picked up this lifeless baby. Tears flowing from my eyes, I knew I still wanted the chance to hold my child in my hands. I was asked if I was sure and I knew I was. I needed to see, hold and tell my baby, “Mommy loves you.” I did and again peace… a reminder of the pain and suffering my child will not have to face in this world.

For that I am grateful, but yet I remembered all the things I will not get to experience. No wiping tears, hearing a little voice say, “I love you mommy,” no kissing scrapes on knees, no bedtime stories, no hugs, and the list goes on and on.

I knew I wanted to know what this little baby was and I asked if we would be able to tell. I looked and I saw and again…..peace. We miscarried in December and we were hoping for a little boy then. A couple days after my miscarriage, my devotional was talking about how we need to let God do His work in our lives and to be patient, not force things and trust Him. That Abraham and Sarah had to wait a really long time for what they wanted most…..a son.

Tears streaming from my eyes, I knew that was God’s promise that I would one day have a little boy. I felt Him reassure me in that promise when I found out I was pregnant again. More confirmation came when people would find out that we were expecting and every one of them would say, “It’s a boy.” My confirmation was there. And I KNEW God had fulfilled His promise. He just never promised I’d get to keep my son. I could only rejoice in the promise God had kept and I immediately knew that God was laying a name on my heart.

Jeron Robert was who this baby was. “He will sing” and “bright fame” is what it means. He IS SINGING with his two other brothers and sisters that were there to meet him. And he is and will live up to his bright fame.

I had started rationalizing, questioning, searching for answers as to why. My mother in law reassured me that I did nothing wrong and maybe there was something wrong with the baby. After closer examination of this beautiful little baby boy, we realized that he had 12 fingers and 11 toes.

God knew and my body knew that there could have and would have been complications later in his life. But in our eyes and God’s he is still perfect. My father told my best…..he said, “with all those extra fingers and toes, he can do God’s work even faster.”

What a sentiment…. and again tears.

I don’t understand it all, but I am so grateful that I was able to carry Jeron inside of me for 14 weeks and to me, he is a blessing, and is still my son.

I am now the mother of 5 children! Who knew? I have three already doing so much more with their lives than I could ever hope or imagine for them and two beautiful girls who have the privilege and already are doing so much here! As hard as it is to lose a child, this is still a wonderful Mother’s day for me, because I am blessed to be the mother of such amazing children. I may never know Jeron as a child, but my body and heart know him. And he will forever be a child who has changed my life so much with the short amount of time he had.

Thank you all for your love, support and prayers. As we bury our son tomorrow, we will begin the healing process knowing that although his life here is over, he is still ALIVE AND WELL!!!!! Praise God!

Filed Under: 11 weeks, 13 weeks, All Newborns / Diagnosis

My Sleeping Beauty

February 20, 2014 by Heidi Faith 1 Comment

Told by: Kelly

I’m 37. I have four living children ages 10, 8, 6, and 3. All of their pregnancies/deliveries were peaceful and uneventful for the most part. We had no reason to believe that our 5th baby would be any different. In fact, my 5th pregnancy was so normal, it drew no special attention at any point along the way.

I was 40 weeks and 6 days pregnant when I finally went into labor. I had been in labor for almost 7 hours when we started losing our baby’s heart beat, for no apparent reason. I was rushed to the OR for an emergency C-section, but was ultimately allowed to delivery her normally under enormous pressure to “get it done now!” I had her out in just minutes. But I wasn’t quick enough.

Our sweet, perfect Hazel was born February 4th 2014 at 3:49 am in the OR room, and handed directly to the neonatology team. I never heard her cry. I never got to look in her eyes. I never cradled her new, naked body next to my chest. I could only watch from my gurney where I was being stitched up as the team pumped her little chest and began to intubate.

My husband followed Hazel up to the NICU where they continued the process of trying to resuscitate her. I was taken to my room to deal with heavy bleeding and intense shaking. At this point I wasn’t terribly worried. I knew the doctors had it under control and it would just be a matter of time before I was nursing my baby and wrapping her in pink. Right? Two hours passed. The nurses finally agreed to let me be wheeled up to NICU to see my Hazel.

I won’t go into all the details of what it was like to see my baby covered in tubes, wires, sensors. Nor will I bore you with all the medical details. But I was told that her brain was already very oxygen starved and she was experiencing brain malfunction. She would need to be transferred to another hospital to receive cold cap therapy. The transfer team took hours to come. She was finally moved about 8 am. I was told I could not go with her because of my heavy bleeding. But the doctor agreed that if my bleeding was under control by lunch time, I could be discharged at go see her then.

In the mean time, I began to pump, hoping that I could at least take a little bottle to my baby and let her drink some of that liquid gold. Around 9:45 I received a visit from the neonatologist, letting me know that Hazel was “not responding well” to treatment.

Apparently that is code for “Your baby is dying and if you want to see her you better get going.” I made them yank the IVs out of my arm. I dressed, grabbed my bag and left the hospital with a trail of nurses waving paperwork at me and telling me to get in a wheel chair. The milk I had pumped was left in the fridge in my room. I waited for what seemed ages out on the curb for my ride to come get me and take me to Hazel.

All the while, I cried to Heaven

“Save my baby! Save my baby. Only you can save my baby. Hear me, God! Save my baby!”

The 25 minute drive to the hospital was eternal. I didn’t move a muscle or say a word. I sat tense, but still believing that my baby would be ok and I’d get to take her home before long. I was still confident that someday I’d look back on this day, with my sweet Hazel in arms, and tell her survival story. Instead, I’m telling her death story. When I got to the hospital, I raced as quickly as my aching stitches would allow down the maze of hallways to the little room where Hazel waited for me behind that tacky blue curtain. She was different. One eye was shut. The other was open just a slit. She was totally motionless except for the gentle rise and fall of her ventilated chest. I saw what I assumed to be the “cold cap” we had sent her here to receive. It sat next to her on the bed, unused.

A doctor came near. I almost screamed, “where’s the cold cap!! Isn’t that why she’s here??”

Very bluntly he laid it all out: it wouldn’t help now. It was too late. She had no more neurological activity. Her eyes were fixed and dilated. “I’m sorry,” he said. “So we’re just going to let her go?!” I demanded. Apparently, we were. I saw it in my husband’s eyes. At that moment I had to accept what was happening, although I’m sure I was not really comprehending the full implications of Hazel’s condition. Her heart was barely beating, but she was still there. Wasn’t there a glimmer of hope? No. Not even a glimmer. I was going to lose her. So I decided that our last minutes together would be as peaceful as I could make them. I asked if I could put my arm under her tiny limp head. The nurses agreed, and actually moved her off the table, tubes and all, into my arms where I sat waiting in a large, stiff rocking chair. I nestled her as best I could around all of the tubes and wires. Soon a monitor started beeping. My husband and I ignored it. We were too locked on Hazel’s sweet face to care. But a nurse came in and noticed that the heart beat monitor had flat lined. She used her stethoscope to find a pulse. “I don’t hear one.” she said too calmly, too flatly, too coldly.

The doctor came in. He didn’t find one either. Time of death: 12:09 pm. My baby died in my arms after just 8 hours and 21 minutes of physical agony in this world. Minutes after her passing, our children arrived. They had just missed seeing their little sister alive. As their mother, I had the duty of delivering the sad news as gently as I could, and with as much dignity as I could muster.

I know that angels bore me up in that moment. I never dreamed I would have to deliver such devastating, soul crushing news to my own children. They each got a turn to hold her, kiss her, and say a good bye. My oldest daughter brought a hat she had just finished knitting for Hazel. We put it on her. Our children left, and we continued to hold Hazel for hours. Funny, I had just delivered a baby, and we had not eaten anything all day long. Yet even as evening came on, I felt no hunger. Only emptiness. Time wore on. If I could have, I would have stopped time so that I could spend endless hours holding my little one. But I knew I had to leave the dead to go care for the living. My children at home were hurting and they needed me. So we began the solemn, heart wrenching process of giving Hazel her first and only bath.

When she was clean, I dressed her in a white gown that a social worker gave to us in a plastic bag marked “Bereavement kit: girl”.

So now I was a case for social workers. I was angry at myself for leaving my hospital bag in my ride’s car. It contained all the things I wanted to put on Hazel in that moment: the blanket, the outfit, the cute socks, the hair bow. She would never wear any of it. Instead, she was wearing this donated “bereavement kit”. After I had dressed her in the white gown, her umbilical cord began to bleed all over and we had to take the bereavement kit off. The nurse spent quite some time hunting down an outfit that would fit my 8 lb 15 oz., 21.5 inch baby. Apparently the NICU is only used to dressing premies, not large, chubby, full term babies with massive heads of hair. They stuffed my baby into a too-small, shabby, red and white outfit. I smoothed her hair once more, laid the donated pink, crocheted blanket on her, kissed my last kiss and left my baby behind.

That is not the end of Hazel’s story. It really is the beginning. But the rest I cannot tell you until I meet her again in that other world where there are no dead babies or heart-broken mothers.

H.J.A. born at 40 weeks 6 days. 8 pounds 15 ounces. 21.5 inches long. Only the angels know why you had to leave us.

Filed Under: 40 weeks, All Newborns / Diagnosis, Child Death (newborn to adulthood)

Our Daughter Harry

December 4, 2013 by Heidi Faith Leave a Comment

Told by: Roberta

My miscarriage story: If I went right to the very start of my story I’d begin where I have a bad ob/gyn history. I had massive fibroids which needed removed by surgery and before the operation I had injections to try to shrink them to a manageable size or I could die.

These injection brought on the menopause at the age of 28 but surgery was a sucess. Two years later on my thirtieth birthday my periods returned which my doctor says shouldn’t have happened but I’d still never conceive. I also met my now husband that week and for what seemed to be a life of misery I was on the up. I got married when I was 32. Five months later after numerous tests and stress I became pregnant. The hospital told me I wouldn’t make it to 12 weeks because I was to heavily scarred. They were wrong.

When I was 16 weeks I had a respiratory infection but hospital scanned me and there was my little bean bouncing away! The following week I felt my baby move for the first time, it felt like the baby was stretching! I got my strength back and at 19+ 2 went back to work. The next day while having lunch with my colleagues my back was aching but I thought I’d just overdid things so I went home and took some pain relief. That night after putting away shopping I went to the loo and my life changed, there was so much blood and a large clot, I just dropped to the floor and sobbed.

At the emergency obstetric unit the doc confirmed our fears, our bean had lost it’s life and with that I lost mine. The miracle I had fought for and that they told me I’d never conceive I’d lost.

The hospital had no beds for a week so I had to call everyday to explain I’d had a missed miscarriage to be told I couldn’t come in. Nature took over on day 4 and my water broke. After 11 hours I didn’t even realize I was in full labour and when the midwife asked if she could take a look I just felt this strange rush; she put her hand on my knee and said “it’s over, don’t look down!” I didn’t.

After the doctors doing their part and getting me more medication I was asked if I wanted to see my baby; I said yes. This was a massive deal for me, I have a fear of anything dead but I had to see my child. The midwife, Fiona, brought me a little basket the size of my shoe and inside was my tiny baby. Fiona asked if I wanted a picture but I couldn’t, decomposition had already begun. She then told me it was a boy, my son, we named him Harry. She said he was 15+1gestation, but how could that be right, I felt him moving after that time? I asked if I could hold him but I wasn’t allowed because his skin was to thin so I just touched his little blanket and broke my heart into my husbands arms. I asked for a post mortem, I needed to know what happened to the boy I was told I was never to have.

We went home but it was empty, I was empty. My arms should have had my baby in them but instead I had a box with hand and foot prints a blanket and a teddy. A few weeks later I had his name tattooed on my arm and we bought a plaque at the cemetery and had it inscribed Baby Harry Swain born sleeping 4.5.12 Always loved never forgotten. It arrived a week before we received the pm results.

Harry had Edwards syndrome, a genetic condition where the 18th chromosome triples rather than doubles but worse of all, Harry was female. Details of how this mistake was made are too graphic but I understood how it was made. I suffered after that numerous panic attacks, I started drinking just to get some sleep and had thoughts of self harm, I was broken. I didn’t want to part with Harry’s ashes but my husband couldn’t cope with keeping them so we agreed to scatter the ashes in the garden of remembrance on the day our plaque was erected. We had a few family members with us and I remember feeling a release of some of the anger I had, not only towards the loss but the anger, anxiety and hatred I had for myself so rather than a day of mourning, I went to the local shops and bought food and drinks for my family and we had a lovely afternoon of laughter and chatting. It was also the day before my husbands birthday so we partied on into the wee hours. I still was very low at times and still had the odd drink for Dutch courage to get through the day.

But that soon stopped, when I realised I was binging not only on alcohol but pizza and fast food, I was pregnant again, eight months after my baby lost her life on the day I let her go she gave me the ultimate gift. Life. I was terrified, could I face this happening again? That was 10 months ago and now that life Harry gave me is truly a miracle. Her little brother Aaron is 8 weeks old and my purpose for living, and may I say an absolute nightmare with sleeping and feeding patterns, but I’d have it no other way! While Aaron is all I could have asked for my heart still yearns for his sister. It always will. We will never forget her x

Filed Under: 15 weeks, 16 weeks, 17 weeks, All Newborns / Diagnosis

What Happened to Emma?

November 2, 2013 by Heidi Faith 1 Comment

Told by: Christine

Mom to Emma Gayle born still on February 5, 2006 Baby Girl Wright Miscarried on March 1, 2010

Many of you have asked ” What happened to Emma?” and I had written a story about my loss and have shared it many countless times in hopes that people come to realize that it is my grief journey and that I am here always for those of you who have gone through a loss.

You see a loss is not just a miscarriage a loss is your whole world. To me a loss is a loss no matter how far along you were. Hopes, dreams, love shattered. I want to share it…I think I have been healing through it and I hope that my light will shine in the darkest of days for those who are feeling alone in it.

So here is the story I have shared and I pray it may bring comfort to those who have gone through it, hope for the future and also understanding of who I am today and what I have gone through to get here…GOD IS MY STRENGTH! Hello. I too am a mommy with empty arms. I was a mommy with a head full of dreams and a heart full of love for my little Emma, yet to be born. But stillbirth, the destroyer of dreams took my whole world away. Here is my story. I feel I need to share it to heal and to reach out to others who have been there or may not be aware of how human we parents are when this happens.

I didn’t know anything like this even existed. I only knew about people having babies or just miscarrying early in pregnancy. Not losing them later or even at birth. We need to come together to help get the word out on this tragedy that we have had to face. There is not enough research on this horribly devastating issue nor is there any true way to prevent it from happening. We have to come together and also let our friends, family, neighbors, etc. know that we were PREGNANT. We had a baby. We can’t just act like it didn’t happen. It hurts more than they could imagine forever. They just don’t know what to say or to do but if we reach out to them and share our stories, maybe it will open some eyes. I know some states don’t even give birth certificates or even acknowledge the birth. That is heinous. It seems so unfair. I am human, I had a baby,I hurt, I cry and there is reason for it. I would like to share my story with you. I will try and not pour out my heart to where you would need Kleenex, but I am human, I am a mommy with empty arms.

My first pregnancy. Wow. I was so excited. It was a girl and she was healthy and things were going great. She was active and had a lot of hiccups every day and most of the time it was all day long. I had prayed for red curly hair…but I had heard that if the mom has the hiccups then they would have a head full of hair. So I wasn’t sure why she had them. I never got morning sickness and was doing great most of the way through. I had a few times that I had itching and had to take benadryl (which they said was safe…I still took children’s benadryl and usually only took a small a sip). I was worried about her and did not want to jeopardize her in anyway. We were doing great. Around my 7th month, I started to swell. Hands, feet, legs, and face. They weren’t too concerned with it. ” It was normal.” To them I guess. Reading books had me worried still. I kept on them about my swelling. “It was normal.” I was 158 when I got pregnant and by the time I had her I was around 215. Normal. But the swelling to me was scary but still was told it was normal. Blood pressure had always been around about 100/70 or lower. It had been fine throughout the pregnancy and no protein in my urine.

So finally there we were 4 weeks until her due date, February 16th, asking the doctor to just go ahead and take her. We were ready and she was full-term. He said he wanted to wait and that natural pregnancies were easier to heal from. Still swollen and it was normal. The baby was fine. No unusual things happened. The next week, we begged him and he said no “we have to wait for the man upstairs to pull the plug.” I was happy to hear that. He sounded like a good Christian and I felt better knowing that. Legs, face and hands were huge. I had my baby shower that Sunday and was doing fine. I was tired and was ready. She was slowing down a bit but I knew she was crowded. But when her daddy would get home and she would hear his voice she would kick like crazy. She knew and loved him. The next time we went to the appointment he was surprised that I hadn’t gone yet and said everything was still good and we would just wait it out. No dilation, no contractions. By then we had two weeks left. That appointment was on Tuesday.

I was just so ready and frantically preparing the house for her. We wanted her home. It was time. What we waited so long. The little hands and the little feet to kiss. I was ready for the breastfeeding, the play times, the bath times, everything you dream about. No activity yet. I just stayed busy getting things ready. Her room was ready, clothes and blankets washed, crib ready, beautiful and awaiting our baby girl, Emma. Everyone loved her. She had clothes all the way up to 12-18 months and 2T. Toys, books, stuffed animals, and even a two-piece bikini with hearts on it. (Daddy said leave that in the back of the closet) But I though about her little chunky legs (if she were built like me) and her bottom hanging out the sides when she would wear it. Dreams. Excitement. We were ready for our little girl, the one we talked to, (I used to just talk to myself when I was alone and found myself talking to her more and more),the one we knew before she was conceived, our love, our life. Our angel.

And then on Saturday morning of the same week, my husband called and asked me if I was doing okay. How I felt, were there any contractions, etc. I said no. But then he said “some thing’s not right. I feel like something is wrong.” After I got off the phone with him, I thought “whoa, I think he’s maybe right.” I was still in bed and usually she was active all day long and especially around the time that he called because while I would sleep he would reach over and tap on my belly so she would kick back. That was their Daddy and Emma time. If would wake up he would tell me to be quiet or be still. I guess they were still communicating. Ha ha.

I got out of bed and ate something and laid down. An hour passed and nothing. I walked around a bit and noticed she wasn’t moving. I went into the nursery and sat down in the rocking chair and talked to her and tapped on my belly so she would move. But nothing. I cried out to God and Emma and said please kick the crap out of me. I need you to move. Still nothing. It was silent and I was scared. I frantically called my doctor’s office. I got a nurse’s aide. She would call me back. It seemed like forever since my husband had called. I called him back and told him she wasn’t moving and that I was waiting for the doctor to call back. I got in the bath to cleanup in case I needed to get to the hospital. While waiting the phone rang and it was the doctor on call. She said get to the hospital immediately. Well, I was an hour away. I wanted to go to another one and she told me not to because they couldn’t deliver anywhere but there.

I got out of the bath and was out the door. I barely remember it being cold and snowy outside. I didn’t even clear off my windshield. I think I made it there in less than 35 minutes. They whole way there I was frantic and praying and crying. Cussing people to move out of my way and praying that a cop wouldn’t pull me over. It was almost a blur when I got there. I had to give them all my information at the hospital again and that seemed like it took forever.

Stricken and moved it all over my belly. Nothing. Not one movement. Not a heartbeat. Nothing. She was gone. Then the shock set in and I told the nurse to call my husband for me. Not even any fluid in the placenta. Once my husband got there, that was about all I remember.

She told me I would have to deliver. I thought, “No way. Take her c-section, I can’t do this. I can’t see her.” Then I felt so angry for thinking that. She is our baby. Our Emma Gayle. The one we knew before she was conceived and I waited for her for nine months. I had to do it. I was her mommy. I am a mommy. I don’t remember much after he got there and told me that.

So from Saturday when I got to the hospital until Sunday morning…it was a blur. I didn’t remember that some of our friends and our families were there until later on. It just seemed so unreal. It was Superbowl Sunday. We joked about that. That I would be in labor on Superbowl Sunday or Valentines Day. I’d be in the other room pushing and everyone else would be watching the game. Unfortunate it was that day. They had given me magnesium sulfate, a drug used to prevent seizures. My blood pressure was extremely high. I could have hurt me too. I had no idea about this condition, preeclampsia. It was the reason she was gone. They were sure of it.

They had given me the cervix ripening medicine and said it would take a while for it to work. I guess I was so drugged up that I didn’t even remember getting my epidural. I wanted to give birth but I didn’t want to feel the contractions. I remember hearing “she’s 8 cm dilated; she can push when she wants to”. I did. Then I started to feel the contractions on my right side. The anesthesiologist took about 30minutes to finally get me numb. He almost took it out to put it in another one so that I would be numb. But in the back of my mind, I was glad I felt them, I was giving birth to my baby. I think it took over an hour or so. I remember them saying that they had to use the suction because there was not any fluid in the placenta to help get her out. It hurt my feelings when I heard that, I was too devastated after that.

She arrived at 12:08on Feb 5, 2006. Absolutely beautiful. 5 lbs 8 oz, 18 3/4 inches long. Small weight possibly from the preeclampsia. She even had the red curly hair I prayed for. She was so beautiful and so precious. I kept waiting for that cry. But it didn’t come. The doctor and nurses stretched and examined the placenta and it coincided with the preeclampsia in the fact that there were tears in it. So we didn’t do an autopsy. I couldn’t do that to her too. My husband was by me from the beginning of it all. My mom and sister joined us in the delivery room. Everyone was so sad. Why? She was here but was gone too. The baby everyone was waiting for was finally here. Everyone who wanted to saw her and held her. She was their little angel Emma too. I could tell it hurt them and that some of them didn’t want to hold her. I got upset and then not. She was my baby. The one we all were waiting for. Hold her. Love her. She is finally here. I was proud of her and I wanted her to be loved on too. I guess I was still drugged and in shock because my emotions were weird. I was so sad and so worried about everyone holding her, I didn’t check out her fingers, her toes, her body, etc. I cried a little bit, stared at her some but never really let out my emptiness and my pain until we were home. But I held her, loved her, missed her, and cried.

My husband held her the majority of the time. She was daddy’s girl. She looked like daddy too. Our whole world was turned upside down in such a quick moment. She was here but already gone. I couldn’t handle that. I just couldn’t believe it all. Let me tell you briefly what the hospital did for us. I can’t even sum it up briefly. They were the best of the best. They set aside a room adjoining mine for all our friends and family to be in. Allowed as many people in my room as I felt comfortable. When Emma was born, they let us keep her for as long as we needed to. They allowed grandmas to give her a bath and dress her in her outfit. Took pictures with the digital camera they have. Sent her hospital picture away to be developed. Gave us a hand print on a card, numerous footprints, a bible, a small teddy bear, her bracelets, locks of hair, etc. Later on we got birth certificates from the hospital. There were two pastors who had come to be with us and give our families and us information on grieving and the loss of a child. The nursing staff was so loving and caring. They sat with us and cried with us, and just gave of themselves like no other. I was so happy with them that I made sure before I left the hospital that I personally commended the hospital staff to the Nurse manager. They still have kept in contact and pray that we are there sometime soon with her little bother or sister. I will tell you the hospital name, Baptist Hospital East in Louisville Kentucky. If I had A million dollars I would let them be known world wide for what they did for us. We buried our little Emma Gayle on February 9, 2006. It was the hardest thing to ever go through in life. It just seemed so wrong that I was burying my daughter. And to the day, she would have been 5 months old, and it hurts just as much as the minute they told me she was gone. It gets easier, but then you could fall back again. I know where she is and I find peace in that but I will forever miss those little kicks, hiccups, dreams, bath time, kissing her fingers and toes and watching her grow. I know heaven will be the only place she will ever know and that Jesus will hold her until we do, but the only place she will ever be to us is in our hearts and minds forever.

We love you Emma Gayle Wright. Born to be an Angel.

Please do not hesitate when you think that something is wrong to call your doctor. If you have to go to the hospital. Get checked out. Don’t forget to count the baby’s kicks everyday. Make sure to ask what your blood pressure is and if there was any protein in your urine. Please love your baby. Take care of you completely. You are carrying your future, your heart. You made the decision to be pregnant and that means allowing your baby to grow up carrying your heart on their sleeves. Believe me, and I am being sincere about this, you do not want to be a Mommy or Daddy with empty arms. Please love and cherish life and your little one growing inside, because in the blink of an eye, all your hopes and dreams can betaken from you. It hurts everyday and all day long. I cry every day. I miss her everyday. I will for the rest of my life.

There is healing in time and time for healing. This time is now.

I love her now just like then, always and forever until we meet again. I have a 2 1/2 yr old whom I had to do shots and weekly ultrasounds with to get her here.

{You may read the story of Emma’s little sister, here.}

Filed Under: 36 weeks, 37 weeks, All Newborns / Diagnosis

Our Angel Prince David

October 27, 2013 by Heidi Faith Leave a Comment

Told by: Giselle

Oct. 31, 2011 – Dec. 19th, 2011

My husband, David and I, had been married for almost 4 years, since October 19th, 2007 during this time. We had been trying to conceive since 2008.

We had a twin miscarriage on December 17th, 2008 after praying for twins.

We miscarried the first one around 3-4 weeks and the 2nd one at 8 weeks gestation. I opted not to have a D&C and allow my body to process naturally and my body did exactly 2 weeks from the last ultrasound. I went through a lot of grief between the doctors not wanting me to miscarry naturally and then with the pathologist personnel when I went to pick up my twins remains.

We then waited about 2 years to TTC again, I went through a terrible bout of depression of not wanting to let go of my babies. I finally had a breakthrough and we finalized the funeral services. I found that once we did the services and I was able to let go through the physical that I was mentally able to move forward with life.

By the end of 2010 I was able to start thinking about TTC again. We started TTC in January and became frustrated with negative tests and charting month after month. In May of 2011 we went to a Church Conference in Chicago, Illinois. On the first night of the conference, while I was praying and speaking to the LORD during the service, I said to the LORD, if I was pregnant to please have that preacher come over to me and tell me that I’m expecting because Lord I am sooo tired of negative after negative testing, and I need to know right now. Well the preacher came over to me while my eyes were closed and put his hands on my shoulder, and at that moment I was stunned and knew what he was going to say. He said You have been praying for a miracle and GOD is going to bless you!

Right then and there I jumped for joy and screamed my heart out and told my husband we are pregnant! The next day we ran to Dollar General and bought a pregnancy test and it surely came out positive! While in Chicago, I also got the opportunity to meet one of my long time Doula friends from facebook, Tricia F. I was ecstatic! I told her what happened and she was excited with us! She even was sweet enough to bring me to the pregnancy clinic to get the test in writing. She also took us around Chicago to Trader Joe’s and also Cutie Poops and Bottoms! We had a blast with her and her fabulous family!

When we got back home from Chicago we started picking out hospitals and started going to appointments. The dating tests from the hospitals didn’t line up with our gestation dates from the start and that was even with charting, so we were stressed. There was at least 5-8 weeks in discretion. He measured small from the start.

Finally about 22 weeks were told he had marginal cord insertion and that was the reason why he was so measuring small. I researched and contacted a trusted friend of mine on FB that is very knowledgeable who basically told me it was nothing to worry about other than the baby will be small because of the position of the cord on the placenta. I usually have small babies anyway so I wasn’t too worried about having a small baby.

Well I ended up going into labor at around 32 weeks. After 3 days of labor and praying that he not be born on Oct. 31st, 2013, Our LiL Prince David was born on that day at 10:04pm barely 2 hours shy of midnight!

He was born crying and pink. He was soo cute and very strong. I still can’t believe he passed away. It boggles my mind beccause he had a 9 on his apgar score. They couldn’t get in to his nose because he was soo tiny but his lungs were strong enough for him to blow out his own mucus.

That was the first and the last time we heard him cry!

He lived for exactly 7 weeks and he fought to live the entire time. We fought for him, trying to get doctors to give him my breastmilk and for them to use other drugs and other methods but all of our desires, ideas, and thoughts were thrown out of the window. I never felt sooo incapacitated in my whole life. I could not do anything for my child. I felt as if I had failed him. The doctors would not listen to us and it just seemed as if he was being killed slowly right before our very eyes. All of our dreams for our precious baby boy were being thrown out of the window.

I didn’t know what else to do. We prayed, sought counsel, tried to find a patient advocate, tried to get him transferred to another hospital but nothing. I kept envisioning myself within a shack in the midst of a terrible rain and thunderstorm with lots of lightening going around and strong gusts of wind. I knew I was safe as long as I stayed within the shack but I kept looking out the window at the storm and wondering when it would ever be over. I kept feeling the desire to be in both places in the storm; with my son or to stay inside out of the way of the storm and just watch my son from the window. It was such a battle for me. I kept praying because I wanted my son no matter what.

He ended up having kidney failure and swelling up like a balloon. He got soo big in the end he looked like he was going to burst. I was scared for what he was feeling my poor lil helpless guy. I was soo tormented watching him go through this and just kept asking GOD why LORD, he is a baby, my baby! I put my hands under him since I could not carry him, one under his head and the other under his bottom (we never got to carry him until he passed away) and said:

LORD whatever Your will is may Your will be done..not my will oh LORD but Your will be done. This is my son my love my heart my ultimate sacrifice my all is on the alter for You may Your will be done. My will is that he lives and not perish. Here is my Isaac.

I kissed him and hugged him, that was the last day I saw his eyes open. He swelled even more until his eyes were swollen closed shut and he passed away 3 days later. The last night he lived me and my hubby sang to him consistently all night long, praising GOD all night long. His stats were the highest they had been in a while he seemed peaceful as long as my hubby sang to him.

When he passed later that day we had just stepped out of the room to go get something to eat but we never made it past the lounge area and got called back to the room. When we got there he was gone and the machines were off. I finally got to hold my lil angel, not the way I wanted to. He fought the good long fight and he was in Heaven with Our LORD and Savior! At least we know we will see him again some day very soon!

Atleast we know we will see him again some day very soon! In the meantime I will continue to tell his story and help others through the ministry that was birthed through him, With These Hands Ministries and our FaceBook page.

We also had so much breastmilk left over from me pumping for him and I did not want it to go to waste So I donated over 350 ounces to The Human Milk Bank of North Texas (HMBONT) It went to a family in need right away. In the collage below is a tree they created to honor the family’s of Angel’s whose milk was donated in their honor. The memorial tree is called Carmens Tree located in Austin, Texas. Our little prince has his own leaf on the tree (pictured below). I am soo glad that we were able to help someone in his honor!

His legacy will live on through me, his father, his big brother Gabriel and now through his rainbow sister as well. Our rainbow, AimeeRose Grace was born on August 20, 2012! AMEN!

I will seek unto God, and unto God will I commit my cause.

JOB 5:8

Filed Under: 32 weeks, All Multiples, All Newborns / Diagnosis, Donating Decisions, NICU Grief

The Birth of a Miracle

August 18, 2013 by Heidi Faith 2 Comments

Told by: Jessa

After two consecutive early pregnancy losses and weeks of hormones that left me feeling beyond icky, I waited what I thought would be the longest three weeks of my life. October 24, 2012 couldn’t have come soon enough. It was finally time to take the test…and when I did, my self discipline and patience was well rewarded…WE WERE EXPECTING!!!

I called my OB’s office right away and scheduled an appointment around our 8wk time frame. Because we had been testing for ovulation and to begin progesterone support, we knew exactly when conception occurred. We knew we’d be expecting our bundle of joy July 4, 2013. When we went in for that first ultrasound, however, our measurements were just a tad off and we were given an adjusted due date of July 10, 2013. This normally is no big deal, and certainly wasn’t to my doctor; but because I was SO sure of the exact day I ovulated and conceived, I questioned it. Could there be something wrong? I was met with reassurance that if there were something “majorly wrong” this early the pregnancy would have already met it’s demise. I openly accepted that our peanut was just a little small and excitedly began making the announcement. After both my previous losses part of me wanted to be guarded, part of me thought I should wait; but in my heart I just knew this was it. It’s hard to explain because I did have all the normal fears, yet I had almost a supernatural peace of mind about this pregnancy. About this baby. About my child.

The pregnancy was pretty smooth, although I did get the sickest with this pregnancy…more so than any other. I thought this was great, though! Could it mean this was a girl? At 16wks we decided we couldn’t wait to know. We made an appointment with Sneak A Peek Ultrasound to determine if “Baby A” would be Allison or Andrew. We packed up the boys, who were equally excited to know, and made the one hour drive to a nearby town for the appointment. There we met an amazing, kind, patient, Godly woman named Cindy. Little did we know, meeting her would provide us with some of out most treasured memories. We began to watch our baby on the big screen. When we got to the “between the legs” shot, though, Baby A was NOT cooperating. We actually went back twice more before finally getting a good shot at 19wks and learning that it was a GIRL! We went on a pink shopping spree immediately only to have a contradicting answer at my medical ultrasound just four days later. What did this mean?? Not even a week before we 100% had a girl, now we 100% had a boy. Luckily I had an appointment with my OB the next day and prayed she could clear it up. She agreed to take a quick look and we became even more confused than before. If the baby was a girl, she was very “swollen” but could be developing normally. If it was a boy, something wasn’t normal. However, she wasn’t too concerned because everything else seemed fine, so if it were something it wasn’t major. I tried my hardest to just accept that and be thankful that we still had a healthy baby, but not knowing what all was or could be going on was killing me. Since she leaned towards it being a girl possibly just reacting to my hormones, we decided to accept that. We started calling her Allie.

I went the next 8 weeks with a, once again, uneventful, normal pregnancy. But at my 28wk appointment my blood pressure had skyrocketed. My OB sent me for labs and for a fetal growth/amniotic fluid level ultrasound. Fearing that my high BP may be effecting my placenta and ultimately the baby, she just wanted to check. The results would change EVERYTHING. Our Allie was measuring only about half a pound behind, but her abdomen was 2 full weeks behind and the cephalic index(size of her head) was not normal. We were immediately referred to a perinatologist at a larger hospital to get to the bottom of her growth problems.

Upon checking in, I noticed our referral form listed “asymmetrical intrauterine growth restriction and ambiguous genitalia” as our reasons for being there. We quickly learned, though, that these were two of the least of our problems. It seemed as if the doctor was giving a dissertation as he went down the laundry list of all that he saw wrong during our ultrasound. “The heart is way too far to the right of the chest. This is not normal lung tissue and appears the same as the intestinal tissue, yes, that is intestine in the chest. Severe diaphragmatic hernia. The kidneys appear ok, but I don’t see a stomach at all. Something doesn’t look right with the heart, yes, the aorta is going into the wrong side. Major heart defect there. And the cerebellum is not developing properly, please note bifid cerebellum. Do you see hands? The hands and forearms are not normal, appears to be missing at least one bone in the forearm. Definitely abnormal genitalia. Possibly chromosomal abnormalities could explain.” I COULDN’T KEEP UP!! My mind was spinning and I’m sure I only heard 80% of what was actually said. What did this mean…and what was I supposed to do? After the ultrasound, he immediately performed an amniocentesis…and those three weeks I had waited to take a pregnancy test were NOTHING compared to the next 10 days.

Then it happened. At 6:04pm on May 15, 2013, my OB called with my results. Our Allie was actually a BOY…and tested positive for full Trisomy 18. The T18 was the reason for everything from the abnormal genitalia to the hernia and heart defect. Everything…and with the diagnosis came the four most abrasive words I’ve ever heard. “Not compatible with life.” I couldn’t move. I couldn’t breath. This wasn’t real. How? Why? What now?

I saw doctors A LOT for the next couple weeks. We did so much research. Intrauterine growth restriction, transposition of the great artery, congenital diaphragmatic hernia, bifid cerebellum, clenched fists, pulmonary hypoplasia, abnormal cephalic index, rocker bottom feet…these terms became the norm…but I hated using them. My baby wasn’t a diagnosis, he was my son. It was hard to keep everything in perspective. We began having conversations with our friends, family and even our 4 and 6 year old that we shouldn’t have to be having. We began making decisions we shouldn’t have to be making. We began making our birth plan. I had one goal…and it was to meet my son and look into his eyes. We had been told it was a miracle with the diagnosis and his specific defects he had made it this far and probably wouldn’t make it to delivery….but in my heart I knew better. I believed in our Andrew. My original OB agreed to deliver me at 37wks with a comfort care birth plan. I chose this because I knew with the odds against us my greatest chance of achieving a live birth would come with him coming sooner rather than later. The date was set. We would celebrate Andrew’s birthday June 19, 2013.

That morning came faster than I ever could have imagined. As I showered I could feel my sweet Drew dancing around….it was met with such mixed emotion. We had already been through so much together. He was already so strong. He had already beaten the odds. I was so ready to have him in my arms, yet I knew that our time would be short…and I wasn’t ready for it to be over. My heart could not grasp the reality that saying hello would also mean saying goodbye. Everyone staggered in to await his arrival…my parents, grandparents, inlaws, good friends, our awesome photographer. My wonderful doula, Nicolle, came…something I was so, so , so happy about because when I first learned our birth would be “different” I wasn’t really sure what her role would be.

The first 7 hours or so were very easy…I even told my friend, Katie, that my contractions actually tickled! Because I had been so focused on all the stress of the previous weeks, I had neglected my original plan of a natural, unmedicated birth and hadn’t spent the time preparing that I should have. When it started getting tough, Nicolle had to give me a crash course! We tried several different things, but ultimately standing is what worked for me. So I stood and prayed and stood and swayed. Nicolle was worried my legs would get tired but I knew I couldn’t do anything else. Then out of nowhere a contraction came that changed everything…it wasn’t the pain…but this one was different. I started getting hot and sweating so much…and the pressure was so much more intense. Nicolle had my nurse, Brandi, check me and I had jumped from 5cm to 8cm in no time! She immediately called my doctor and by the time she ran across the parking lot from her office to the hospital we all knew it was time. I told everyone I couldn’t do it…I begged them to help me, but my OB said the only thing that would help would be to push. I did. I pushed once. My tiny son came flying into this world with one push.

Andrew Milan Martin was here. And his eyes were OPEN. I achieved my one goal…I got to look into his eyes. At 2:22pm on June 19, 2013, I gave birth to my hero. I was SOOOO proud of him. I couldn’t stop saying “you did it!” He even tried to cry a few times He was bigger than we expected at 3lb13oz and 17 1/4″ long. He was beyond perfect. We had spent so much time focusing on and learning all that was wrong with him that I was far from prepared to take in just how beautiful he was. We kissed him, we held him, we talked to him, we bathed him, we dressed him, our boys came in to meet him, our families came in to meet him. Then at 4:13pm he earned his wings. His tiny broken heart had finally stopped. This had given us more time than we expected…not that it would ever be enough. We celebrated Drew’s birth with our family. I wanted this to be a happy time…we even had cupcakes and sang Happy Birthday. His body may not have been “compatible with life” but he was definitely worthy of it.

Everyone trickled out…my doula, friends, family…we were alone. Just me, my husband and Drew. This was a very difficult time, but I’m thankful for it. We were able to take pictures, do footprints and just cuddle. We needed that. We let him leave our side for the first time at 10:00pm that night. We said what were the most difficult goodbyes of our lives and handed him to my nurse. I was beyond broken, but as she walked away I couldn’t help but be proud. I hadn’t just had a baby…I gave birth to a miracle.