This story starts a few months before I was pregnant with my son. December 2011 I found out I was pregnant, I was ecstatic; at the time my daughter was 3 and a half. The initial ultrasound they did didn’t look right, I should have been 5 weeks pregnant and instead it showed nothing. After being reassured my dates were just off they set up later ultrasounds to confirm. I went to the doctor the next day to set up my prenatal appointments, and as I was in the office I noticed I was bleeding. Scared the midwife decided to do an HCG test to see if it was a miscarriage. After they did the test my HCG was still rising, they told me it meant I wasn’t having a miscarriage and everything would be fine. A few weeks went by and I had another ultrasound (at the clinic) to confirm my pregnancy. This time, it showed a growth, but it certainly didn’t look like a baby! She said I needed to follow up with my doctor since she wasn’t sure, why it was growing, or I was still pregnant, but there was no heartbeat. A few days later, Christmas eve I had more bleeding, thinking it was stress with getting all the Christmas things done I ignored it, until it got worse. It was the 26th and I decided to go to the ER. They did an ultrasound, wouldn’t let me see the screen, and came and told me I was having a “threatened miscarriage”. My HCG was at the correct level for what it should be for how far along I should be, but my uterus appeared empty on the ultrasound. My instructions were to follow up with the doctor in a few days for a repeat HCG test. After my HCG test with the doctor I got a call saying my HCG had more than doubled(which is what it is supposed to do every other day) so I was fine, no miscarriage.
Beginning of January I had an ultrasound with a doctor this time. He told me that there was no way this was a viable pregnancy, that I had indeed miscarried. He had me come back in a week to do a follow up ultrasound and make sure nothing had changed. I was SO very sad. It had been such a roller coaster you are pregnant, no you aren’t, you are, you’re not, it was so emotionally draining. The following week I had an ultrasound and he confirmed a miscarriage. He told me there was a lot of tissue and eventually my body would “flush it out” but there would be a lot of bleeding. I opted for a D&C. With school and work I could not afford to wait around for a miscarriage. My D&C went well and I had to go back a week later for a check to make sure I was healing normally. I went alone thinking it was going to be no big deal. The doctor does his check and says that I am healing fine, BUT he needed to talk to me. He comes back into the room with some papers and tells me I had actually had something called a molar pregnancy. A molar pregnancy is an abnormal growth of cells, it will appear as a pregnancy through blood work, but if it is left untreated (through D&C) it could kill me. It involves being monitored for 12 months after a D&C to make sure it doesn’t return, if it returns it will be cancerous and I will need to have chemo!! What a bombshell!
The next few months I went in for routine blood tests. First every week, then bi weekly, then monthly, as my HCG dropped. I was not trying to get pregnant because if I was and my HCG rose they would not know if it was the molar coming back, or if I was actually pregnant. And here is where Emery comes into my life…
Beginning of June 2012 I started feeling “pregnant”. I could smell people 10 feet away and food that I couldn’t even see. I ignored the symptoms at first, but I began with more and more symptoms, I couldn’t ignore it any longer. June 15th was my monthly blood test; I had gone in a few days early because I just felt weird! I get a call on the 18th from a nurse at the office, my HCG had jumped from 1 last month to 20,000 this month! She told me there is no way it can be a normal pregnancy because 20,000 is too high to be 4 weeks pregnant. 20,000 is more around 6 weeks pregnant since HCG doubles every other day. She sets me up an ultrasound for June 21st. Terrified it was the molar pregnancy, and I would be needed chemo it was hard to make it through my daughters 4th birthday (the 20th). The morning of the 21st time creeped along, I finally walked into the ultrasound with my husband holding my hand. Expecting the worst I looked at the screen, he says, “see right there, that’s a heartbeat. You 6 weeks 5 days and your due date is February 9th. I sat there staring at the screen, shocked. The doctor walks out of the room and I jumped up and danced around a bit. I was so excited I didn’t need chemo, and even better I was having a baby!
6 week 5 day ultrasound picture, our very first time seeing Emery.
My pregnancy went along normally. Besides just 1 week I wasn’t even sick! Every 3 weeks from my original ultrasound I had a cyst on my ovary and they had to make sure it didn’t get too big, or I would need surgery half way through my pregnancy. So I went back at 9 weeks and 12 weeks. Neither time was to check on the baby, but I asked him to look anyway. I was so excited to see my bouncing baby in there growing! After 12 weeks the doctor said I wouldn’t need to go back that the cyst wasn’t big enough to need surgery.
Emery at 9 weeks 5 days his head is on the bottom size. (normal ultrasound the head would be a solid white curve, you can see his isnt solid)
This is Emery's heartbeat from the doppler.
The following week I got a call Wednesday evening from my midwife, I missed the call and frantically tried to call back, thinking she would only call if something was wrong. I just knew she was going to say my baby had down syndrome, since I thought that was the only thing they tested for. I was sad and so stressed that I couldn’t get ahold of her before she left the office. The next morning I called back early, knowing I needed an answer as soon as possible. My midwife was out of the office but they had a doctor pull up my chart so they could see why she had called me. She told me that the blood test showed that there was a chance my baby would have a brain or spinal defect. She said “they are only 70-80 percent accurate so it still may be nothing.” 70-80 percent doesn’t sound like nothing!!! It sounds like most likely something is wrong!!! She set up an ultrasound for 6pm that night. I googled what brain or spinal defects it could be and came up with spina bifeda and anencephaly. Terrified for both, thinking spina bifeda would mean such a hard life for my son, and anencephaly meaning no matter what he would die. I studied ultrasound pictures of both so I could know for sure before the doctor even told me. I called my parents and they asked if I wanted them to come down. I told them I guess so, thinking it didn’t matter too much but maybe it would be nice to have them. Then I called my mother in law and told her what was going on, and she decided to come too. They all live an hour away but drove down to come to the appointment with us. I took my daughter to my grandparents, and my brother and his girlfriend stayed there too. The rest of us headed off to the doctor. They allowed everyone to come into the room. My husband and his mom sat to the left of me in the chairs, and my mom and dad stood to the right of me. As the doctor did the ultrasound I could see what he was about to tell me. He stops with a look on his face that shocked me. He looked so upset. He said “I am sorry but your baby has anencephaly. I am no expert but I am 99.999 percent sure, we will have you go to a specialist to confirm.” I sat there numb, thinking how the hell does this happen and what do I do now??? My mom is the first one to speak and says, “so what does that mean?” I turn and tell her, “it means he is going to die”. Everyone starts crying, maybe the calm blunt way I said it wasn’t the best thing. The doctor walks out of the room and says he will give us a minute. As soon as the door shut behind him I burst out crying. My parents said no matter what I decide, no matter the cost, or what insurance does or doesn’t cover I can handle this however I feel is best and they will support me however they can. We left the doctor with an appointment an hour away with the specialist set for Monday. We went home and told my grandparents and brother, everyone seemed to sit there in a stunned silence. After all our family knew we went to the backyard where my daughter was playing and sat down with her. We told her that we were sad because we just found out her brother was sick, and that he wouldn’t get to come home with us he would go with the angels instead. We had made the decision to tell her right away rather than waiting, because we knew he would see us sad, and this way she had the most time to prepare herself for it as well.
We came home and our families left. My husband and I thought about options, terminate or carry him to term. As much as “getting past this” seemed appealing it was not the best option for our family. We wanted to see our son and to hold him. We didn’t want to be the ones deciding to end his life and we knew that we could fill his life with love rather than pain. So that night we had our decision, we would give him the most time we could and love him for every moment of it. We got on the computer and started searching names. We came up with Emery Iris. Emery means home strength; we agreed we would need a ton of strength to get through this, as well as him needing strength to make it to his due date. Iris means love. It was also special to us because it was the song I walked down the aisle to at our wedding. It’s also an asteroid, which was what my daughter thought we should name her brother, Kayla if it had been a girl, Asteroid if it was a boy. As cute as my daughter is, Asteroid was never really in the running, but compromising on a name of an asteroid worked for us.
Monday morning came around; we were ready for the appointment. We left my daughter here and drove for an hour to the office. We met our parents there and together we all went into our appointment. The appointment started out with a nurse doing an ultrasound. The machines were hooked up to a computer in the doctor’s office. She checked everything, all his organs, confirmed he was out son and made sure everything was correct and then she got to his head. There it was again, though we already knew. The doctor came in and the nurse told him we already knew, he said ok; see you in my office in a minute. She finished up the ultrasound and handed us pictures. Since we knew we were going to carry him to term I asked for pictures when I walked into the room, I wanted every memory I could have. We all get up and walk into the doctor’s office. He says, “Your baby has anencephaly, most likely what happened was while the bones in the top of his head were forming they didn’t connect for some reason and the pressure from the fluid caused them to collapse, which prevented his brain from growing all the way. He is missing the top bones in his head and his brain. You have 2 options, terminating or carrying to term.” I said we are carrying him and he told us that he may die in utero as the pressure from the fluid could become too much for his exposed brain to handle.
We left the office and I felt pretty alone. He told us we couldn’t donate organs and that this wasn’t a very common birth defect. I was scared for how this was going to go and felt like I was the only one in the world who had to go through this. Over the next few weeks I did research, lots of research. Found online support groups and scheduled ultrasounds. I was determined to make the best of this and make every memory possible along the way. I saw the specialist at 19 weeks and 2 days, so I had half of my pregnancy left to do as much as I could do to love my little boy.
These are the pictures from the ultrasound at 19 weeks and 2 days.
His face
His feet
fingers
both hands (they are labeled backwards) left picture is right hand (though it says left) right side is left hand
Heart and heartbeat
Right hand
Whole left side of his body.
Its a boy!! :)
Weeks went on and we had 2 thirty minute 3d ultrasound sessions. One was at 22 weeks, and one at 28 weeks. We invited our whole families and my daughter LOVED watching her brother on the screen. We saw him get the hiccups, and drink fluid, kick and move all over. I even have a picture of him covering his eyes, makes me smile every time. I am so thankful for those ultrasounds as I saw my son do things I wasn’t sure he could do, and things I would never see him do after he was born.
22 week ultrasound pictures
Arm over his head
Seeing him smile!
Hiding his eyes (when he is only supposed to have involuntary movements how does he do this??) One of my favorite pictures!!
28 week ultrasound pictures
View of his face
Taking a big drink!! (we had NO idea he could drink until the ultrasounds, some babies with anencephaly are completely unable to drink)
I called the funeral home and got all kinds of information ahead of time. Planning for a birth and death at the same time was so strange to do, but I made it happen. I found an amazing lady who made burial gowns for babies, and she even let me send her a piece of my wedding gown to help make my son’s gown. I looked got urns and bought some baby clothes. My mom made him a sweater and hat, premie size and new born size since we had no idea how big he would be. My grandma made him a blanket and some booties, everything matched and it was so perfect to have something specially made for him!
Emery's gown and hat. She also made a memory envelope out of the same wedding dress as his clothes, and made me a prayer shawl.
Holidays became “Emery’s (insert holiday here)” as it would be the only holiday with him around. Halloween we went to a pumpkin patch for the first time. I picked out a small pumpkin for Emery, thinking it had to be “his size”. My daughter picked out hers and then thought we needed 4 tiny ones for her brother. We let her take one and had her share them with the other little kids. Thanksgiving we spent thankful for every day and moment we had with him. Thankful he kept holding on and thankful for all the love we could give him, and that he was teaching us about. Christmas we got him some booties and scratch mittens, and a little sign to take pictures with that said “babies are a gift that touch our hearts forever”. Next was new years and suddenly I was realizing we only had weeks left!!
Our pumpkins for "Emery's Halloween"
Christmas presents for Emery
January 5th we had an “angel shower”. We got together with family and a few friends and I asked people to bring in quote, poems, or write something themselves to include in a scrapbook. During the shower each person worked on their own page. It was one of the coolest things I have and I am so thankful for it! I also had people bring items to donate to the lady who made Emery’s burial gowns, instead of baby gifts. Later in the day my husband’s cousin took maternity pictures. I am so thankful to have a photographer in the family. Normally I take all the pictures, but ones that I want to be in, that is hard to do!
Angel shower pictures....
Working on my scrapbook pages
My husband made some pages too.
Working on his pages
family decorating pages
Opening Emery's sweaters made by my mom.
opening presents
instead of baby gifts I asked people to bring things to donate to the (AMAZING) lady who made Emery's gowns.
Maternity pics done by Carla...
February 3rd I had to get to the hospital at 11pm. We sent my daughter to my grandparents. We went out to dinner and ate his favorite calamari. No idea why it was his favorite but he never moved the way he moved when I ate calamari (so we tried to eat it as much as possible). Afterwards we went home, got our things and made our way to the hospital. I got up to labor and delivery and they gave me a room as far away from everyone else as possible. It ended up being down a hallway that no one was in, it was wonderful knowing I didn’t have to hear all the other babies crying. I actually made it the entire time not listening to a single baby cry. I did see babies in the nursery (but I went and looked). They got me all hooked up to machines and started the induction process. I slept as much as possible, thinking tomorrow I would be holding my little baby boy. The morning came and they started Pitocin. I called our families to let them know and they all headed to the hospital, not knowing how short or long I would be in labor. Without my son having the bones in his head we were not sure how things would progress. The night came and the hospital gave my family a room to themselves. They had come from out of town and so they gave them somewhere to sleep, thinking maybe he would be coming that night. Around 2 in the morning my water broke. But by the morning things were still the same, nothing much was happening. They kept uping Pitocin and hours kept passing.
Arrived in my room....HUGE
All hooked up
tower of meds
My room...far away from the rest of them
Monday...in labor with nothing happening
Talking to family
My daughter, playing doctor, checking on her brother
Finally Wednesday morning, the 6th (I got to the hospital 11pm Sunday night) I could hear the nurses saying continues Pitocin could rupture my uterus. I was furious that I was being put in danger with the medicine they were giving me! My midwife was so determined that I was having this baby naturally it felt like she didn’t care whether I would have more children or not. When the nurse came back I told her I wanted to have a c-section. 60 and a half hours of labor and risk of infection from having my water broken for so long. I also during the 60 hours had had 4 epidurals and none of them had worked, I had just had enough! The nurse came in with the consent forms, and were telling me they would make sure, no matter what I was the first to hold him, even if they had to wrap my arms around him. I signed the consent forms and my husband went out to tell our families that I was having a c-section. When he walked in I told the nurse I had a very sharp pain in my hip, she asked me to roll a bit and as I did there was a HUGE gush. My water REALLY broke. As this happened my midwife walked in and the nurse told her I just had a big gush. She checked me and said no time for a c-section this baby is coming now. My husband went back out and told the families no c-secition and came back in.
By the time he was back in everything was ready to go. He came in and I asked for water (since I hadn’t eaten and had only been allowed to such on ice chips since Monday). Then it was time to push. Only a few minutes later he was born. Emery Iris was born at 11:55 on Wednesday February 6th 2013. He was born with a heartbeat, but didn’t take a breath. His heart continued to beat for 11 minutes. Our families came in to see him and hold him. The normal 4 people limit was waived and everyone got to be there. Each person got to hold him and love him. We had a pastor come out and baptize him, and a professional photographer who works with NILMDTS came and took pictures. After a few hours all our families left and my husband and I were alone with our son for the first time. We laughed and cried and smiled and took lots of pictures. It was an amazing and awful experience and one that I cannot quite explain. We made tons of footprints and handprint keepsakes and held on to every moment that slipped by far too quickly. 11 that night we had to say goodbye. We were lucky enough to be able to donate his heart valves so we had to give him up. As I handed him to the nurse and she walked out of the room my husband caught me as I almost fell to the floor. I cried like I had never cried in my life. I had just said goodbye to my son. We held each other and cried.
Now I Lay Me Down to Sleep photos...
I had to stay in the hospital that night as I had a slight fever so they wanted to give me some antibiotics. My original plan was to leave that night, but I agreed to stay if I could leave by 8am the next morning, midwife and nurses agreed that would be ok. About 1 am we walked out to the nurses’ station. I wanted to show my nurse the 3d hand mold of Emery’s hand that she helped us with. She was gone but the other nurses came and hugged us. They told us that when our nurse had carried Emery out she sat there and rocked him and cried. All the nurses took a turn holding him and they thanked us for getting to hold him (though I had no idea this had happened when it was happening). I walked back to the room with a huge smile on our face. I was blessed to have nurses who cared so much about my son that they didn’t even want to say goodbye.
The next morning as I was waiting for my release papers my phone rang. It was the donor place, they told me they were able to use Emery’s heart valves and it would save not one but 2 other babies! They said it may take a while before they get used but if we wanted to they would keep us informed of where they go (how cool is that!) We left the hospital and went home (finally) to an empty house. I showered and laid in bed, it felt so good to be home, though I was so sad it was without my baby. It felt so weird to be doing nothing, so I got up and started doing “Emery things.” I looked at all the pictures we had and started picking ones for his baby book and for my house. I unpacked my hospital bag and neatly folded all his things. I was much happier working on his stuff.
Friday the 9th we went to the funeral home. We signed off on all the paperwork and got Emery dressed. They left us alone and we each got to hold him one last time. He looked so handsome in his gown; it had a little vest on it making him look like a little man! My husband had brought his tie from our wedding. Since I had given part of my wedding dress for his gown, he wanted to do something special too. He tied the narrow end of his tie and cut the tie in half. The tiny tie fit him perfectly. We said goodbye one final time and had to go home. It was almost harder a second time leaving him because this time I knew it was my last. The following week was his cremation. My husband went to it feeling like it was his job as his dad to be there for him the whole time, I couldn’t go I didn’t want to be there for that. The next day we went and picked up his ashes, it was Valentine’s Day. Though I would have loved to have my son healthy and happy at home with me I was so glad to bring my piece of my heart back home that day.
Emery is a part of my daily life though he isn’t here with me. We talk about him daily and have his pictures throughout our house. I write a blog about our experience with Emery and hope to publish it into a book one day. Having my son and telling his story isn’t to show me as a “victim” ,it is so that other families know they aren’t alone. Too many times losing a child goes untalked about or unnoticed. Having Emery was one of the best experiences of my life, in the midst of sorrow I found joy. He gave me a new hope for my life and future. I spend more time with my family and enjoy each and every moment with them. Carrying my son to term was one decision I will never regret. I gave my son a birthday and was able to fill his entire life with love, what more could a parent want to do for their child? I will miss him every day of his life but I am so very thankful I was able to see his face and that I am now able to share his story.
Other pictures....
Ultrasound pictures from a doctors appointment at 25 weeks...
Back of his head
He is making a fist on the side of his head if front of his ear. The circle in the middle is his ear, the fist is in front of that.
Hand by eye. His arm goes up the left side starting in the bottom corner.
Left leg, on the left side of the picture.
A profile picture of his face. He has a little grin :)
This is a good picture of the back of his head. His spine and what part of his head was gone.
Pictures throughout the pregnancy...
20 weeks
20 weeks, a few days after they confirmed his diagnoses
30 weeks pregnant.
Christmas day 33.5 weeks (what a difference a few weeks makes!)
Pictures of his birthday...
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