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
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 .