We lost our baby girl

We lost our baby girl last week .

She was born on the 28th week

In an emergency C section .

I didn't feel her movements for a day and a half ,and was told to go to an emergency room .

On may 12th ,our lives changed 180 degrees .

She had a very rapid heartbeat and they decided to operate immediately .

We didn't get to hold her and the first time I saw her ,that night - she was already intubated and wired to the NICU

Life support .all I wanted was to hold my little baby ,but her condition didn't allow me to.

The next morning I felt an urge to run to her room ,without any support I pulled myself up and walked the long corridors to the NICU ,as soon as I arrived her room was filled with doctors ,they ran an EEG

And it was obvious to them that she had an injury ...she didn't cry or open her eyes

And her entire body seemed stressed out and shocked .

They repeatedly asked me when did I start to bleed ...I never did . Everything was ok until yesterday when I stopped feeling her ...

Two days later we left the hospital without her - I was in a nightmare .we didn't want her two little siblings to know

And tried to keep them out of it

Since we were not sure she's coming home . They told us that little preemies are fighters and sometimes they overcome . Let's wait for ultrasounds and MRI to get a clear picture .

After a few days we were told that the MRI came out NORMAL and the ultrasound showed signs of an "old" bleeding but it isn't there anymore .

We were so happy that night ! Our hopes rose to the sky

Our entire family hugged and felt a relief .

We're taking you home baby !! I was overwhelmed and slept all night (after a few sleepless nights )

However - her body didn't seem to respond .no reflexes were working and she was not breathing on her own , she was not able to feed on her own and she had seizures (although she did went off the vent for a couple of days until her lungs collapsed)

The following weeks went by ,I was there in the morning singing to her talking to her touching and praying , at night we both came back got updates have her our love and left crying .. Our immediate family was all around us and felt optimistic that she will overcome

And since they couldn't find any reason for her condition - we chose hope !

Another ultrasound came ,it showed a brain bleeding stage 1- they said it wasn't significant however ,they want back to the MRI and radiology department found that the brain is not developing into its normal curves and folds as it should be at this age ..they expressed concerns about her quality of life and said that we still have to let her grow and gain some weight ,she might be able to have a normal life .

After two weeks ,I got there earlier than usual ...she was moving all over

Her shoulders and head feet hands ,I started to think that God had reignited her and turned on her switch !!

To my grave disappointment and shock (!!) apparently there was an upplanned extubation and my little baby was literally convolsioning in pain .

I got the update and started crying

It was obvious that whatever happened now was about to worsen her condition . They didn't agree and said that if there was lack of oxygen it would show in an MRI . Her condition did get worst .

Clinically ,and neurology wise . Still

Every morning  we all carried prayers ,came to her with high hopes and left at night crying after more sad news .

They told us that if it will continue like that we will soon have another conversation of where do we go from here ...

We got the last MRI - it was so grim that all of them held their chins or foreheads out of shock when they read it in front of us .

She got eschemia in the thalamus area of the brain and its surrounding areas were affected as well .

Lack of oxygen to the brain , to the center of the brain...to the brain receptor .

In the next couple of days we took off from the world - we read endless articles from all the sources possible ,to educate ourselves and grasp the magnitude of this injury .

We realized eventually what it meant .

The next morning we had a sad conversation with the doctors

We wanted to hear in simple words of what we read was true .

They all said yes . Life with this kind of injury is a living hell .

Not only that a person is impaired in many ways and not able to think - the most dominant feeling they experience is pain . The brain doesn't translate commands or emotions or senses properly .

The dr from fatal deseas spoke to us

And explained as well .

We asked what now ..they said that they can help her clinically but can not do anything to help her neurologically .

We decided that we will never condem our child to such a life .

The next day after 27 days of hope

We agreed to let her off life support .

It was the first time we saw her face without any tubes or pipes ,the second time we held her ...

Our little angel took two breaths and passed away .

We stayed with her until her last heartbeat ,we sang to her we told her our names ,her siblings names ..they recorded songs for her and we let her listen to their little voices

We kissed her and smelled her and apologized for all that time she had suffered ...

I wanted her so much

I imagined our lives so full with her in them

The sadness and grief is so profound and so deep

I want to be with her

But I know I must stay here and be strong for my kids for my husband

For my fate .

I believe that one day I will find her

In another world

We promised her we will never let her go

There ...

I found this group yesterday .

I never joined any support group before

But I never experienced or in my wildest imagination I had never thought I would experience such a tragedy .

I have nightmares and I let myself mourn her loss ,but I know it will take time

We spoke with the kids ,they are better than us they have a self healing mechanism and although they are very sad they keep on being kids .

I want their health and happiness above all.

What I learned from this so far is that

LOVE is the fuel of the world

It is the cause of everything and the reason we live for .

I gave her life out of love and took the toughest desicion a parent can take

Out of Love .

And all we have left is our love

For our family and for this world .

9 Replies

  • In reply to lvazquez:

    GianGian
    I felt you heartfelt message and was urged to reply. I am also going through the same thing and grieving. My daughter was also affected by a brain injury. As I grieve and relate to many stories here, I feel obliged to share my message of hope for those in need. The truth of why this things take place and cause so much suffering. Our love for our children will remain intact even though the suffering fades away. God is love and he did not create life with this purpose and thru faith he promises that he will clean all pain and sorrow. Losing a loved one, specially your child in these type of conditions is a very trumatic experience and we all ask ourselves many questions which are all answered by God. And that is the message that I feel obliged to share, that if you believe that there is hope, you will see major change in Gods new world and he will compensate everything that we have been thru. I really empathize and share the pain with all those parents that go thru this, we all go thru this together in some way and we can comfort one another by sharing our heartfelt experiences. Love never fails... jw.org
  • Hello. I am so sorry that you have experienced the tragic loss of your daughter. Your story brought many tears to my eyes. The NICU can be such a scary place and then you have hope. Each day goes up and down and you don't know what will come of all of it. I'm so sorry that you did not get to bring home your daughter like you had hoped and planned. I hope that you will find some health and happiness like your other kids. If you need to share, we are here.
    Cassie
  • In reply to hobbes579:

    So so sorry for your loss
    Your story left me with tears
    As it took me back to similar memories ...

    I want to tell you that time does make a difference .
    I know what you feel and it is all normal ...everyone is allowed to take it differently
    However - there will be moments that you will have to remind yourself that YOU are alive and here
    And remind yourself of all the people that love you ,need you and want your best .

    Be strong but allow yourself to mourn your angel ...
    You will know that you have healed
    When you are able to tell your story without crying...

    I just happened to tell mine without crying after 6months.
    I am holding your hands in solidarity
    And hope that this traumatic time in your lives will be filled with love to each other and understanding ..

    Until you meet again ....
  • Never did I ever think parenthood would lead me down such a dark path ending the tragic choice to take our daughter off life support. On November 5th after 8 days due to an unknown complication that deprived her brain of oxygen during delivery. They did 3 days of cooling a day of rewarming and then finally she had the MRI. We were told that she'd have no mobility and even with support from a ventilator she would have at best a 50% chance of making it to age 2-living full time in a hospital. The next day we took her off medical support and like you, it was the first time we got to see her without all the tubes and wires. It was the first time we got to cuddle her and be with her in a space without all the damn beeping. She stayed with us from 9:30 in morning to 6 that evening until she took her last breath in my husband's arms.
  • I came across your story and wow! The true expression of a mother's love. I am so sorry for your loss "Out of love" so very true and so very beautiful.
    Sending prayers for you and your family,
    Big Hugs,
    Helena
  • Hi welcome to share. My son too had something wrong with his brain. He had no reflexes and barely moved. We had doctors tell us there was nothing they could do. Those words so hard to hear and hearing them taking every last bit of hope you had away. We had to decide to let our son go and be at peace. My husband and I say it's the most unselfish thing we ever did because by keeping him on life support it would have been selfish of us and not what was best for him. I wish that you did not have to got through this and hear those words just as I wish I didn't either. Many hugs to you. We here for you when you need us. Nicki
  • Welcome to Share. My heart goes out to you on the loss of your baby girl. This is a journey no parent should ever have to travel -- I know this all too well from my own loss of twin boys in March 2007. I hope that we at Share can be your support system. Be kind to yourself.

    erin
  • Welcome to Share,
    From the bottom of my heart, I am so very sorry for your loss. I lost my baby girl 9 years ago due to Trisomy 18, diagnosed in utero. I too made the decision not to let her struggle or feel pain. She was DNR upon birth. She held on for 9 precious days, with a feeding tube and oxygen canula. Her name was Josie and I miss her everyday. I found this site a few years ago and it has helped me so much to network other moms who get it. Wishing you peace as you embark on this journey of grief.
    Love and Hugs
    Brandi
  • Welcome to Share. I have tears reading your post. I am so very sorry for the loss of your baby girl. You made the toughest decision a parent could ever make. I hope that you are finding comfort in that she is no longer in pain. She truly must have felt the love that you all have for her and will forever have for her. You will always be her mommy. I'm an angel mom too. I had two other young children at home and lost our third baby at 30 weeks. I found this site shortly after and it's helped me to deal with all kinds of feelings. I hope that you continue to take it one day at a time and visit us here when you need to talk about your angel.

    Keeping you in my thoughts,

    Lindsay
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