# Our story.... (long)



## alternamama82 (May 28, 2009)

I'm fairly new here - I used to have a membership some years ago when my ODD was a baby, she's six now. I've mostly been hanging out at Diaperswappers for the past few years.

I've been searching the internet for hours at a time, looking for some form of comfort and support since my daughter was born on March 25th.

Our story was tragic and very unexpected.

I had been measuring really, really big during my pregnancy with Freja from about 28 wks. I hadn't been seeing my OB as often as I should've (not that it would have changed the outcome though.) Although we didn't know the gender of our baby, I really truly thought I was "just having a boy," since the pregnancy had been so different than it was with my other two daughters.
I went to see my OB at 36 wks, and she measured me - I was measuring 10 wks ahead. At this point I was SO uncomfortable day and night, I couldn't sleep, couldn't sit, couldn't even stand. I'm only 5'2" and the top of my uterus was very literally up to the top of my sternum, like where your ribs come together in your chest. We joked that maybe the ultrasounds I had at 18 and 20 weeks had been wrong and I was having twins.

I was sent for a fetal assesment test scheduled for March 25th to determine why I was so huge. My OB figured that I was carrying alot of extra fluid.
It was such a long week waiting to go for that test, I thought several times that I was going into labor but was terrified of it happening at home since reading about polyhydramnios and the chance of cord prolapse. We live an hour away from the hospital, btw.

I felt like a horrible mom that week, waiting. I could hardly do anything for my kids I was so uncomfortable. I scared myself with all the info I found regarding polyhydramnios, but comforted myself by thinking that nothing bad would happen to _me_. Nothing bad would happen to _my_ baby. I had already made it full term, what could possibly go wrong?
Wrong.

We braved a blinding snow storm on our way into the city on March 25th, because I was so determined that I needed this test. I knew deep down that _something_ was not quite right.

We got to the hospital and situated in the ultrasound room, and the tech was blown away by my size. I felt like I was suffocating when I layed on my back for the u/s. She started looking around on the screen, checking out various parts of the baby. We joked about how big I was and I asked her if she was sure there weren't two babies in there. She switched over the u/s to 3-D, and DP and I both were blown away by how much the baby looked like our 19-month-old daughter. I asked the tech if she knew the baby's gender and she said "Of course, I'm too nosey not to look!"
DP and I looked at each other and, after not knowing till this point, agreed that we wanted to know.

"It's a girl," she said. I'll never forget that moment, how happy and blown away I was that I would be the mother of three girls. I thought about how excited the other two would be when they found out they were going to have a little sister. I started teasing DP about being the only male in the house. I knew immediately what her name would be - Freja. I had loved this name for so long, and we would finally be able to use it!

Sometime during all this excitement, things turned serious and I didn't catch on. The tech went to get a doctor, and that's when fear overcame me and I
stopped making sense of everything.

He came in and sat down, and started looking around. His face was stern and he looked concerned. After some time (I can't really say how long, because time seemed like it stood still,) he said "Things aren't good. The baby is very small, around 4 pounds, and shows signs of having a condition called Trisomy 18."

The world came to a screeching halt, I truly discovered what Hell is, and I don't know how things will ever be "Okay" again.

We walked to a room next door and I sobbed. I cried so hard and loud, and shook uncontrollably. I don't really remember too much. The doctor told us what they had seen on the u/s - our baby had clenched fists, clubbed feet, a large hole in her heart, and one kidney was enlarged. I couldn't believe that this baby inside of me, who I felt moving, had so much wrong with her.

He told us that most babies with this condition don't make it to birth, most are miscarried early on in pregnancy, or are stillborn. I remember asking him again and again if she would be born alive. He didn't know.

I was asked if I allow for an amniocentesis to be done to test for Trisomy 18, as I was scheduled to deliver at a smaller hospital that wouldn't have the capability to handle a baby as sick as Freja would be. He also recommended that I have some amniotic fluid drained for comfort. I was very much against this all at first, until I realised that we really needed to find out if Freja did in fact have this condition.

I took a couple of pills to "relax" me but they didn't seem to work, and went and layed back down in the u/s room. I was so terrified of everything going on. The needle, The fact that my baby might not even make it to birth, the inability to process all this information that was being flung at me. I have never felt so helpless and out of control of my life.

I had the most severe case of polyhydramnios that they had ever seen. They removed 6.5 litres of fluid, and there was still a few litres inside of me. They took a sample of fluid for testing and we were told that we would have the results in about a week. I couldn't imagine having to wait a week, knowing that my baby might die inside of me during that time.

I was sent up to L&D for monitoring, and at this point was feeling very sick. I was having alot of pain, and you could actually make out a perfect outline of my baby's body inside of me. It was the weirdest thing ever.

I remember a nurse putting the monitor belt around my stomach. I remember being in pain. I remember not being able to pick up the heart rate very well with the monitor. I flipped from side to side and although I have very little memory of it, at some point I was wheeled into what I now know what was the OR.

There was a crowd of people standing over me, talking. I didn't know what was going on. Chaos. My pants were slid off and somebody was checking to see if I was dialated. My water was broken. I remember frantically asking if I could have her "naturally," without a c-section. Somebody said that's what we were going to try doing. They placed a scalp monitor on Freja's head. I heard her heart beat, and it quickly began to fade away, "beep, beep, beep...... beep...................beep....................... ................................." And a mask came down over my face and I tried saying something, and that was it.
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I awoke briefly after the surgery was complete, but don't remember anything other than watching a nurse push morphine through my IV, and then it all goes fuzzy. I had what I thought for the first two months after her birth was a Classical c-section, as the incision on my skin was vertical, but I later discovered that inside it had been a low-transverse.

I don't remember seeing Freja for the first time, although somebody took a couple of pictures of the three of us before she was transported to the NICU. I have no memory of the rest of the day she was born, and only small bits and pieces of the following day (I don't remember being wheeled down to see her in the NICU for the first time.)

She had to be on a CPAP machine, which blows air continually into the lungs to keep them from collapsing. She did not require added oxygen. It was discovered that she had a blockage in her esophagus, so she could not have a tube feedings via mouth and instead was put on IV fluids and lipids. She had a connection between her stomach and trachea, so she would've aspirated stomach contents into her lungs unless surgery was performed to close the connection. The hole in her heart was not as big as they first thought it was during the u/s, but it was very enlarged and she did have a cardiac ventricular septal defect.

We met with a neonatologist the morning after she was born and he spoke very compassionately to us about the typical outcome of babies with T-18. It is a condition that is deemed "incompatible with life." It was a miracle she was even born alive. My so desperately wanted and loved baby.

Because the typical lifespan of babies born alive with T-18 is generally hours, days, maybe weeks at the most, we didn't want our Freja to suffer more than she had to. We took things one day at a time and let her life unfold.

We met with a Palliative care team daily, and arranged to have a professional photographer come in to do a photo shoot of our family together. We also did footprints/hand prints of all three kids together.

With all these decisions to make, we knew that she would show us the direction that things had to go. We stayed in the city at a Ronald McDonald House near her and my parents took care of our other two children. We lived in that NICU morning, noon, and night. We became very close with alot of the nurses working there, I swear that they are what kept us sane during this experience. Every day I felt guilty and torn about not being able to be with my other two children, especially our 19-month-old. My parents would bring them to the hospital for visits with us, and I felt like a stranger to them, but I knew that Freja needed us more.

We loved our baby fiercely. Hardly a moment went by without one of us (and even some of the nurses!) holding her. I pumped breast milk, dipped q-tips in it, and swabbed her mouth and lips with it and she loved the taste. I longed so desperately to hold her, free of all the wires and tubes, and nurse her. I have never felt so happy in my entire life in those moments, holding my baby who was alive, just being so happy that she was ALIVE! I came to the realization that I had every reason in the world to be happy to my core that she was alive in my arms at that particular moment. I knew that I would have a lifetime of grieving ahead of me, and that I needed to make what ever time we had together the happiest days of my life. How can a mother find such happiness in such tragedy? I'll never know, but it was such a fine line......

I got to bath her in a baby bath tub, I got to change her diapers, I got to dress her in her little sleepers that I had packed for her months before in my hospital bag.

There was so much that happened within the days of Freja's NICU stay. I could write all the details, the good, the bad, just...... everything. It was all so overwhelming.

I never did get to bring my baby home though.

We stayed with her for fifteen days in the NICU before she decided that she couldn't go on any longer. And that was my biggest fear. Babies aren't supposed to die. A mother isn't supposed to have her baby die in her arms. I wasn't supposed to have _MY_ baby die in my arms. I was so fearful that she would be in pain, and so scared of the unknown.

We had been staying in the emergency Parent Room next to the NICU when we got the call around 3 AM. Although she had been SO alert with her eyes wide open and looking at us, Freja had been having very irregular heart rhythm that night which is why we stayed in the Parent Room. I just had a feeling that we needed to be very close by her. We threw on our clothes and flew in to see her. Our nurse told us that her heart rate was very poor, and we just held her.

She layed there on me, wrapped in her little blanket. I can still picture her perfectly. Her adorable, perfect little lips making sucking motions. She opened her eyes a bit. I listened to every breath. They became further and further apart. The nurse put her arm around me and told me that she thought this was the end... Her heart monitor started doing weird things, and it took a while for it to click in that this really, truly was the end of my baby's life. A couple of other nurses came to our area and turned off the monitors. Our nurse took off Freja's CPAP mask and told us to just kiss her and love her. We kissed her, rocked her, my tears streamed down onto her little fuzzy head. She had dark hair like me! I hardly got to see her without her CPAP mask and hat, it was so nice to be able to study her little features.

I'm so sorry.......... this is so long, and all over the place. It just feels good to get it all out.

I......... I just don't know how I'm supposed to go on without her. I came home, and all her things have been sitting here. Waiting for her.

It just feels so wrong.

I miss my baby so much it hurts to breathe........

http://i246.photobucket.com/albums/g...a/IMG_0806.jpg


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## jtrt (Feb 25, 2009)

Oh, sweet momma, I am so very sorry for the loss of your precious Freja. There are no words.....

Amy


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## JayJay (Aug 1, 2008)

OOoooooohhhh gosh mama. My goodness...

*HUGE, enormous, heartfelt hugs first of all* - not only is your story so incredibly sad in many ways: it's also so incredibly amazing. It is incredible that your Freja lived for fifteen days - incredible. Wonderful in fact. How wonderful to have those days. That is a good thing. Sounds funny to say but, yes, it is a good thing isn't it.

I am so very sorry that she isn't with you anymore though. I've been there. The sensation is really indescribable...so so painful.

You are in the right place for healing and support, mama, I promise you that. We all support one another here and we get each other through all the way to the other side, where there is light again.

*HUGE, huge hugs again* mama...so much love to you and Freja and your husband and little girl... XXXXXXX


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## evinmom (Jan 17, 2009)

My heart breaks for you and your family.







: I am so sorry.


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## Jules09 (Feb 11, 2009)

I'm so, so sorry. My son also died in my arms, 8 days after his birth. It was the hardest thing I've ever been through, but at the same time I was glad that he wasn't alone and I could be there with him, loving him, as he passed. He looked so beautiful without his ventilator, and I could finally hold him and rock him without all of his tubes and wires. It was both the happiest and saddest time I had with him. I'm so sorry you went through this. It's not fair, I wish your beautiful Freja could be with you now.


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## Fireflyforever (May 28, 2008)

She is beautiful mama - and you write about her with such dignity & love & compassion. Thank you for sharing her with us.

I have found this board such a lifeline in very dark times. I hope you find comfort and support here too.


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## Amy&4girls (Oct 30, 2006)

I'm so sorry for your loss of Freja. She's beautiful.


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## Seedlings (Dec 20, 2007)

I am so sorry for your loss







. Thank you so much for sharing Freja with us she is a beautiful angel.


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## rsummer (Oct 27, 2006)

OMG... I am just so sorry. So much of your story touched me and reminded me of my own. I am so sorry for the pain your family is experiencing and that you only got your baby for such a very very short time.

And you are right... Babys are not supposed to die. I was just thinking on my way home from work today that I never want to hold another cold baby again, and I am sorry you've had that experience too. Sending you and your DP all my love and warm thoughts and healing.

Rebecca


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## milletpuff (Jul 4, 2008)

she is beautiful. May you meet again in a better place.


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## SMR (Dec 21, 2004)

I'm so sorry your beautiful Freja is not in your arms now.


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## Vespertina (Sep 30, 2006)

I'm so very sorry for your loss. Wow. My heart just breaks for you. So, so sorry.









As I was reading the beginning where you mentioned measuring ahead I recalled the later part of my pregnancy with Duncan. I had a feeling where it was going. I developed polyhydramnios at 29 weeks. I just knew it was the case. I had mild poly with my first that was idiopathic. At 31 weeks I measured 41 cm. My midwife and I kept hoping it was me and tried various remedies and homeopathics that help with fluid imbalance. But I kept getting bigger. We couldn't feel Duncan at all. I had way too much fluid. My uterus was so distended and irritated. By 32 weeks I was contracting a lot because it was irritated. We knew PTL was a risk and cord prolapse. Since I was planning a homebirth we went over our plan as far as dealing with the excess fluid. I was going to have one more appt. with my midwife before having a u/s done to see what was up. I never did make it to my appt. I noticed lack of movement and just had a gut feeling something was wrong. I knew it could be difficult to feel his movements because of the extra fluid, but I knew deep down it wasn't because of the fluid. He was gone.

I was 35 weeks and measured 47 cm the night before being induced. I had severe poly, which I knew was often associated with trisomy disorders. I knew the moment he was given to me and I held him in my arms that he had Down Syndrome. He was so beautiful. He had so many complications. So many. They weren't compatible with life at all. It's so heartbreaking.

She's beautiful! I'm so very sorry.














My thoughts are with you and yours. You're in the right place for support. This is my "home." These ladies are wonderful. Such a great support.







:

Freja


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## expatmommy (Nov 7, 2006)

Thank you for sharing your beautiful Freja with us.


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## mamacita angelica (Oct 6, 2006)

I am so so sorry that Freja is not in your arms. Your writing is so full of raw beauty and heartbreak. Thank you so much for sharing Freja's story with us. This board has helped me a great deal. A place to share those dark dark days of grieving with women who get it.

We will remember Freja here.


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## oakparkveggie (May 7, 2004)

Oh mama, I am so sorry


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## yarngoddess (Dec 27, 2006)

Thank you for sharing, that was beautiful! Your daughter was wonderfull, brave and strong. <3 Freja <3 Blessings to you all!


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## MI_Dawn (Jun 30, 2005)

What a beautiful little girl she was. Thank you for sharing her story with us. I'm so very sorry for your loss.








: Freya


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## NullSet (Dec 19, 2004)

Your daughter is beautiful.

I'm so sorry.


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## mrsbabycakes (Sep 28, 2008)

Freja is beautiful. I'm so sorry she's gone.









Much love and many prayers to you and your family.


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## NicaG (Jun 16, 2006)

Freja is beautiful. I'm sorry for your loss, mama.


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## alternamama82 (May 28, 2009)

Thank you everyone for your kindness and understanding.

Many







to all the mamas who are all too familiar with the heartbreak of losing a child. I hurt for all of you, too. It hurts knowing there are so many of you here who are living it every day, trying to put one foot ahead of the other and make sense of your loss.

Just, lots of


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## Undercover Mama (Oct 14, 2008)

Oh mama, I'm so so sorry! Your story has made me bawl and I know it will stay with me forever. You wrote your experience so well I felt like I was there. You have made me realize how easy it is for me to take for granted the precious things in life and how much I have to be grateful for.

It is so easy to complain about my 20 month old making messes or how sore my nipples are from nursing my 2 week old around the clock, or the worry over dh losing his job and how to get the bills paid.

The story of your precious freja is going to remind me to celebrate life.

I wish you peace in your journey. I hope you will come to realize as sure as the noon day sun that she is in a wonderful place and that you WILL get to be with her again.


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## Cari Norris (May 27, 2009)

Blessing to you all. Honor her precious life...she came to give you gifts you will understand in time. I lost my son at 14 weeks four weeks ago. It hurts so incredibly much, but I know his life had, has meaning and I know his spirit is with us.
Huge hugs to you all and much love,
Cari


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## Mizelenius (Mar 22, 2003)

I am just







and







with tears of sadness, but also with the tears of knowing-- of Freja knowing-- how much she is loved.

Thank you so much for sharing your story and your love for your daughter. In her brief time here on Earth, she has touched so many, including me. She is just beautiful!


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## maisiedotes (Jan 2, 2005)

Oh mama, I am so, so sorry. She is beautiful. I hope you find some comfort that you did have some wonderful days with her... and you will always have those memories. She knows how loved she is.


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## calmom (Aug 11, 2002)

your story is both beautiful and absolutely heartbreaking. i'm so, so sorry you had to lose your beloved Freja, so sorry.


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## ShwarmaQueen (Mar 28, 2008)

Freja's story is so moving, I'm so sorry for your loss.


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## Ashes (Aug 17, 2009)

Thank you for posting it. It was very well written and I cried reading it. I'm glad I got to hear about Freja. I love her name too.


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## starling&diesel (Nov 24, 2007)

Blessed be, wee precious Freja...


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## ladyjools (May 25, 2009)

you write so well it made me cry, your little girl was beautiful,

Jools


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## MiracleMama (Sep 1, 2003)

I am SO sorry your little baby girl is no longer with you. It's not fair, it's not right. She is so beautiful.
Like Jay said, it's so tragic yet as i read your story I thought how wonderful it was that you had precious time with her before she died.


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