What to do now... How to go on

My boyfriend and I had a baby boy on Feb 24th at 34 weeks who was born with an increasingly common deformity. It's called gastroschisis. This happens in the 10th week of development when the stomach is closing. Basically the bowel doesn't go inside of the babies body and there is a hole beside the belly button that doesn't close. They say it can be caused by stress, which I had a lot of during my pregnancy..

My boyfriend had worked a night job starting at 11pm. He worked until 7am. That night I was in labour for 12 hours before we went to the hospital because I wasn't sure if I was or not. It didn't seem to be painful, and I was used to having Braxton hicks often.

When We arrived at the hospital, they said I was 3 cm dialated.

I was suppose to travel 2 hours from my home to another hospital but I was too far along so they had to do an emergency c section because both of our heart beats were very high.

They called the medical staff from the children's hospital and they arrived after 15 minutes on the icy roads.

I had to have a catheter put into my arm and then into my spine. It was so painful I was crying. After that, I was in the operation room. They sliced the incision and I felt the doctors hands inside my body turning my baby to get him out of my body without hurting his bowels.

My boyfriend was with me through the whole surgery.

I saw my baby was outside of my body and I started to cry, before they drugged me again.

Then they out me in an ambulance separate from my baby and they said my boyfriend couldn't be with me anymore. He had to drive in another car to get to the children's hospital 1 hour away.

I was put into isolation because we came from another hospital. The room was really outdated looking like it was still in the 1950s.

I was in so much pain from the incision that I could hardly move my body. I couldn't get up in bed and I had to use a catheter to pee.

After 1 night, I wanted to see my baby so badly that I found the strength to get out of bed and into the wheelchair. My boyfriend was also staying in my hospital room the whole time and slept on the couch beside me.

We went to the neonatal unit and we had to wash our hands before entering. There was even a lady to unlock the door.

We went to the room and he was laying in a incubator with tubes in his nose, arms, a heart beat monitor on his little foot, and a breathing device down his throat. Of course, there was a bag keeping his bowels elevated so slowly they could push them back in with gravity and a bit of force.

It was so amazing to see out little baby that was half of my boyfriend and half of myself.

We were told he would be out of the hospital within a month, and we had plans to be staying beside the hospital in a Ronald McDonald house.

After two days they said I could have all the tubs removed from my body. I was so aide I have a huge fear of needles.

They took out my catheter and it was so painful to even pee and it seemed impossible like the bladder didn't function anymore.

They removed the one from my spine and I could tell something was off.

We came to visit our little baby as often as we could, sometimes a few times a day.

After two days I wanted so badly to leave the hospital as I had been awake for multiple days. I could hardly walk and my back wouldn't go straight anymore from the epidural.

Somehow I found the courage to leave the safety of the hospital and medical staff and to take care of myself. If you want to learn to walk again and gain strength you have to push yourself.

I walked out of the hospital and into the freezing cold. It took 15 minutes to walk 200 feet to our room because my back would physically not go back to normal.

Everyday the pain got better and better until eventually it was gone, but my back has still 3 months later never healed fully.

Our baby had to have his little stomach pumped constantly of fluids and he wasn't allowed to eat anything, only be fed through his veins.

3 days after our boy was born, we noticed that the bag had burst open, and his bowel was starting to turn dark.

We tried to notify the nurses, and they claimed it was fine and what not. Well it wasn't.

A few days later my mother and aunt came to see their grandbaby.

The surgeon came in to let us know that in the past few days they had noticed the bowel becoming necrotic.

We were all confused and scared.

She explained to us that she would have to do an examination to see if there was anything that she could save of his bowel.

Our little baby came back and the doctors said there was nothing alive what so ever.

The surgeon told us she had never seen gastroschisis this bad before and that we still had options.

We were told we could keep him alive forever being fed through a tube and breathing on a machine, but there was no chance of a transplant because there was nothing to attach it to.

It was just too much..

They said he would develop infections constantly through his life from being fed through veins and that it was not possible to live a full life.

They asked us what we wanted.

What we thought would be best for our baby and for ourselves.

We thought of every possibility imaginable, we had so many questions.

The only options were two.

Life or death.

We could begin palliative care, which is end of life care or we could keep him alive.

We thought it was so so selfish to keep him alive. It was unnatural and inhuman.

He was suffering badly and it wasn't fair to him.

I loved him so so much that I couldn't see that happen to him, so my boyfriend and I chose to start palliative care.

We were told over a few days, weeks or maybe months his little body would deteriorate and that his death would be peaceful as he was given a lot of pain medications so ease the thirst hunger and pain.

From then on, we slept in the hospital room.

First they took out his breathing mask and for the first time he was able to make sounds.

It will forever haunt me. It was raspy and it sounded like he was a dying animal.

We were now able to hold him. I was able to breastfeed him finally, but only this one time before they would stop giving him sugars. They said it would make it worse for him.

I wished so badly for him that he didn't have to suffer, and I thought was it was humane that animals had a better death than a human child.

Next they took away his heat from incubator. He was only 35 weeks.

I woke up that night from a dream about my baby shivering, and sure enough he was.

I stayed up every night from now on and gave him love and affection as much as I could. Held him to keep him warm.

He would cry for hours and hours and I felt so so badly for him. I would have given him every organ in my body if he could have lived.

He was so strong and heathy in every other way. It felt like such a waste of a perfect little life and soul all because of this one organ that had died.

He loved to sleep beside us at night on our bed. We did that from now on so he would feel as much of our love as possible before he died.

Every while we would give him water in a syringe so he would feel like he was full, but soon after it was sucked out by a tube in his stomach.

Slowly over one month my baby boy because skinny and sickly. He eventually stopped crying when they gave him new medications.

He would sleep all day and night.

I wished so much I could just see him open his eyes one last time or even make a little noise.

After one month, our baby was not moving at all anymore and his organs were depleting at a fast rate. His heart rate was very low.

It was so unnatural and painful watching your own child die. Parents are suppose to outlive their children.

In the early morning of March 25th, we held him. He was dying. He was so cold and lifeless. We cried and sat alone in the room.

I slept beside him all night and wished it was all just a bad dream.

In the morning, we bathed his stiff body and put dressed him into a little outfit. He was taken away and we were picked up and taken home.

He was cremated. His name was Fritz.

How do you go on after that.

My boyfriend and I stayed together.

We want to try again after my incision is healed.

I don't think you ever get over something like that, you just learn to live with it.