Samurai's story

Shortly after we found out I was pregnant, my husband and I discussed baby names. I laughed when I told him, as a teenager, I wanted to name my future child Samurai, but Allen exclaimed, “Samurai—I love it!”

From then on, we called our growing baby Sam. At 13 weeks, we received a phone call from our doctor’s office, asking us to come in the next morning to discuss our prenatal screening results. I knew there was a problem and I stayed up all night worrying.

Our doctor grimly entered the room and announced, “I’m sorry to tell you this, but there is a high chance the baby has Down syndrome.”

I sat in numb shock as she outlined all the things that could go wrong with our pregnancy and child. Miscarriage, stillbirth, cognitive and developmental delays, heart defects; the list went on and on. She then explained where the nearest abortion clinic was. When she was done, she asked if we had any questions.

“Is it a boy or a girl?” Allen asked, and I remembered we would find out the gender through the prenatal screening. I loved him so much for thinking of our baby, not the probable diagnosis we’d been handed.

The doctor scanned her papers and said, “A girl.”

Neither Allen nor I knew much about Down syndrome and we set about learning all we could. Most helpful were blogs and social media accounts from families who had a member with Down syndrome. Despite the grim picture the doctor had painted for us, it appeared every single family had plenty of happy times and dearly loved their children, brothers, and sisters with an extra chromosome.

We moved forward with the pregnancy and continued to face negativity from the doctors and specialists we saw. With each comment implying Samurai would be better off not being born, our resolve to have and love our perfect daughter grew.

The name Samurai took on a special meaning as we learned our daughter was a true warrior. She thrived throughout my pregnancy, then overcame an early birth, long NICU stay, a terrible feeding tube, and open-heart surgery at two months old to repair her large ventricular septal defect.

We loved Samurai from day one and feel so lucky she chose us to be her parents. Every challenge we’ve faced has been outshined by joy she’s brought us. Today, Sammi is a smart, healthy, adorable 7-month-old, and we can’t wait to help her achieve anything she sets her heart on.

You can follow Samurai on Instagram at @samurai_aiko

Emelina's story

Emelina Anne Victoria 💗During my pregnancy with her i was in constant fear of loosing her. I had been through a stillbirth in my 7 mounth off pregnancy Only months before I got pregnant with Emelina. It was an horrible time and my heart was broken. I cryed so much I thought I would never stop. I prayed that I would get pregnant fast. I lost my sweet Samuel in September 2015 and on the 23 of December I had a new positive pregnancy test in my hand. I was over the moon and I was dancing around

with my oldest daugther. But it didnt take long before I was afraid all the time. I booked appointments with a spesialist in pregnancy and I went regularly. As I was already over 36 years old and had been through 3 missed abortions and 1 stillbirth we could not go through that again. We did all the ultrasounds and more to check that the baby was fine . I cryed a lot and every time I didnt feel her I called my doctor. At one point I started bleeding a littel and both me and my husband was in tears.

We hurryed to the doctor and when the ultrasound showed that the baby was fine we both cryed even more . The doctor told us that its a girl and we couldnt be happier. We decided to name her Emelina from her great grandmother and Anne from her grandmother, Victoria because she would be our victory. I worked a lot when I was pregnant with her as we had just opend a bakery in Costa Rica. My feet swelled up and I was just very tired. We did a non invasive test to check for down syndrom because of my age but the results came back negative. Since we have a son with Asperger Syndrom we wanted to know in advance if our daugther would need any thing special. Her birth started in week 35 , I couldnt believe that I was in labour,  I didnt feel much pain, I just kept going to the toilet a lot . That went on for a whole day and night,  finaly my husband said that we have to go to check me out , I didnt much want to cause I was waiting for the real labour pain . At the hospital the doctor says that this is happening now , I can feel the head he says . I felt afraid since i didnt feel pain , how can i push if i dont feel it.  Also my stillbirth was fresh in my mind. This was all in Costa Rica, being that I am from Norway it was all very different.

I get put in a wheelchair ,even though I am telling them I need to stand. They take us upstairs. I am feeling a mix of happiness and feeling afraid. They come to do a last check of me and the nurse gets all stressed and starts yelling in spanish. Another doctor comes and they bring an ultrasound machine. I am looking at my husband. Finally they explain to us that the baby has changed position and is now laying bendt so they can feel her foot and her head. I am rushed into emergency cesarion. I am so confused . My husband is told to wait outside. They tell me that this has to happen fast cause the baby is not breathing good . I am thinking, not again. They explain a lot that I dont hear, I just want my daugther out of me . They tell me that when shes born they will show her to me right away. But that dont happen. I see them taking her away, into another room . Shes not crying. They come back and tell me that they think that my daugther has trisomy 21 . I dont even know what that is .

I am in recovery, my husband is send home . My baby is somewhere in the hospital alone. It is all so emotional. Finaly I get her in my arms. I cry, I can see that shes different. They are acting different with her and its hard to figure out what I am feeling. It takes me a good 15 min to understand,  I am dealing with it . I dont care what she has . She is alive and shes mine. During the stay in the hospital its hard, rough treatment and Emelina scores bad on tests I dont understand. Shes rushed to a different hospital to check her heart. I am not  allowed to go. So much crying and they dont tell me anything. She comes back . She has two holes in her tiny heart. I am in shock. I am holding her. At home we are understanding that this will be hard. No help and a lot of wrong information is given to us to make it all feel harder. But we love her so much. Thats all we know.

When shes 5 weeks everything changes. She is suddenly sick, I call the ambulance and they take me and her to the hospital. My four other kids and my husband stay behind in our house, confused and worried.  At the hospital its a fact  that she has gotten the RS virus. She is very ill .They give her low oxygen. Its not helping. And it gets worse and worse. I am not told anything thats happening, shes last in line cause of her DS and its all to much . Finally she stops breathing by her self and she is put on a respirator. Now she has also gotten bronkiolitt. I am destroyed.

I am asking the doctors for answers is she going to be ok . All they tell me is that they're not God.

I am understanding that we might lose her. But shes so strong, such a fighter. Even there,5 weeks old,very sick and with holes in her heart alone shes lying there, fighting. Cause I am not allowed to stay with her, I have 4 visiting hours a day. My day is waiting outside the hospital from morning to night, and at night I am waiting for them NOT to call. If Inget a call its because shes gone. We decided that we have to close our bakery and move back to Norway if she makes it through.

We cant live in a country that cant give her what she needs. The day I got to hold her, breastfeed again, I am never forgetting. We go home from the hospital again . This time even more afraid . I dont leave the house with her for 2 months and no one is allowed in. We are full of fear for her getting sick again. On the plane back to Norway we are holding our breath every time someone coughs. There is so much to be said about giving the rigth information, the right support.

Back in Norway, I am a basketcase, crying in every meeting with doctors. But to my surprise, they listen to me and they support me and they include us in all things regarding Emelina. They give me all the right information and tools that slowly builds me back up. Cause I was more broken then Emelina. My fear of losing her came in the way of enjoying her. The heart doctor here finds that she also has a small pulmonalstenose and a PFO. We will always be afraid of losing her, no matter what.

But she is the light in our family . She is what makes us good on a bad day. She will be 1 year in a few weeks. I cant believe it. She is  growing ,learning and beeing a baby . She goes true health issues like other babys. But if i could say one thing about beeing a mother of a child whit DS its that ,thats it ,Iam a mother, like all other mothers. She is my beautiful baby, a baby like all other babys. She deserves all the love in the world like all other babys.

It rips my heart out that we are treathing dissabilitys like something unworthy.

Iam Sorry fore writing so much ...i get  carryed away. Also Sorry fore my writing mistaces.  Feel free to use from Emelinas story what part works best

Aw, thank you! ❤❤❤❤❤❤

Show quoted text

On Sat, 17 Mar 2018, 18:45 Signe Tømmerås, <emelinavictoria2016@gmail.com> wrote:

Emelina Anne Victoria 💗During my pregnancy with her I was in constant fear of losing her. I had been through a stillbirth in my 7 month off pregnancy only months before I got pregnant with Emelina. It was an horrible time and my heart was broken. I cryed so much I thougth I would never stop. I prayed that I would get pregnant fast. I lost my sweet Samuel in September 2015 and on the 23 of December I had a new positive pregnancy test in my hand. I was over the moon and I was dancing around

with my oldest daugther. But it didnt take long before I was afraid all the time . I booked appointments with an specialist in pregnancy and I went regularly. As I was already over 36 years old and had been through 3 missed abortions and 1 stillbirth we could not go through that again. We did all the ultrasounds and more to check that the baby was fine. I cryed a lot and every time I didnt feel her I called my doctor. At one point I started bleeding a little and both me and my husband was in tears.

We hurryed to the doctor and when the ultrasound showed that the baby was fine we both cryed even more. The doctor told us that its a girl and we couldnt be happier. We decided to name her Emelina from her great grandmother and Anne from her grandmother, Victoria because she would be our victory. I worked a lot when I was pregnant with her as we had just opened a bakery in Costa Rica. My feet swelled up and i was just very tierd. We did an non invasive test to check for down syndrom because of my age but the results came back negative. Since we have an son with Asperger Syndrom we wanted to know in advance if our daugther would need any thing special. Her birth started in week 35 , I couldnt belive that I was in labour,  I didnt feel much pain, I just keept going to the toilet a lot . That went on for a whole day and night,  finally my husband said that we have to go to check me out, I didnt much want to cause I was waiting for the real labour pain . At the hospital the doctor says that this is happening now, I can feel the head he says. I felt afraid since I didnt feel pain, how can I push if I dont feel it.  Also my stillbirth was fresh in my mind. This was all in Costa Rica, being that I am from Norway it was all very different.

I get put in a wheelchair, even though I am telling them i need to stand. They take us upstairs. I am feeling a mix of happiness and feeling afraid. They come to do a last check of me and the nurse gets all stressed and starts yelling in spanish. Another doctor comes and they bring an ultrasound machine. I am looking at my husband. Finally they explain to us that the baby has changed position and is now laying bend so they can feel her foot and her head. I am rushed into emergency cesarion. I am so confused . My husband is told to wait outside. They tell me that this has to happen fast cause the baby is not breathing good. I am thinking, not again. They explain a lot that I dont hear, I just want my daugther out of me. They tell me that when shes born they will show her to me right away. But that dont happen. I see them taking her away, into another room . Shes not crying. They come back and tell me that they think that my daugther has trisomy 21.  I dont even know what that is .

I am in recovery, my husband is send home . My baby is somewhere in the hospital alone. It is all so emotional. Finally I get her in my arms. I cry, I can see that shes different. They are acting different with her and its hard to figure out what I am feeling. It takes me a good 15 min to understand,  I am dealing with it . I dont care what she has. She is alive and shes mine. During the stay in the hospital its hard ,rough treatment and Emelina scores bad on tests I dont understand. Shes rushed to a different hospital to check her heart. I am not  allowed to go. So much crying and they dont tell me anything. She comes back. She has two holes in her tiny heart. I am in shock. I am holding her. At home we are understanding that this will be hard. No help and a lot of wrong information is given to us to make it all feel harder. But we love her so much . Thats all we know.

When shes 5 weeks everything changes. She is suddenly sick, I call the ambulance and they take me and her to the hospital. My four other kids and my husband stay behind in our house, confused and worried.  At the hospital its a fact  that she has gotten the RS virus. She is very ill. They give her low oxygen. Its not helping. And it gets worse and worse.

I am not told anything thats happening, shes last in line cause of her DS and its all to much. Finally she stops breathing by her self and she is put on a respirator. Now she has also gotten bronkiolitt. I am destroyed.

I am asking the doctors for answers, is she going to be ok . All they tell me is that they're not God.

I am understanding that we might lose her. But shes so strong, such a fighter. Even though she is 5 weeks old, very sick and with holes in her heart, alone shes lying there fighting. Cause I am not allowed to stay with her, I have 4 visiting hours a day. My day is waiting outside the hospital from morning to night and at night I am waiting for them NOT to call. If I get a call its because shes gone. We decided that we have to close our bakery and move back to Norway if she makes it through.

We cant live in a country that cant give her what she needs. The day I got to hold her, breastfeed again I am never forgetting. We go home from the hospital again. This time even more afraid. I dont leave the house with her for 2 months and no one is allowed in. We are full of fear for her getting sick again . On the plane back to Norway we are holding our breath every time someone coughs . There is so much to be said about giving the right information, the right support.

Back in Norway, I am a basketcase, crying in every meeting with doctors. But to my surprise, they listen to me and they support me and they include us in all things regarding Emelina. They give me all the right information and tools that slowly builds me back up. Cause I was more broken then Emelina. My fear of losing her came in the way of enjoying her. The heart doctor here finds that she also has a small pulmonalstenose and a PFO. We will always be afraid of losing her, no matter what.

But she is the light in our family . She is what makes us good on a bad day. She will be 1 year in a few weeks. I cant believe it .She is  growing, learning and being a baby. She goes through health issues like other babys. But if I could say one thing about being a mother of a child with DS its that, thats it I am ok a mother, like all other mothers. She is my beautiful baby, a baby like all other babys. She deserves all the love in the world like all other babys.

It rips my heart out that we are treating disabilitys like something unworthy.