Tobias- Our brave little man

In this entry of my blog I want to tell you about my angel brave Tobias and his short little life.

Tobias was born in 2003 when I was admitted to Hillingdon Hospital, Tobias was born !0 weeks early weighing just 2lb 13oz.

He was kept in the intensive care part of the Neonatal unit mainly due to his size and so he could be carefully watched and helped to keep warm in a incubator and be fed via a tube in his nose. Other then this he was a healthy little boy who breathed for himself and was very alert.

I was able to hold his and through the holes in the incubator.
On day two I was even allowed to hold him for a short time.

The following five days Tobias remained well and alert. A lot of family and friends visited Tobias many were very surprised at just how tiny a 2lb baby is.
I spent most of my time by Tobias’s side talking to him and holding his hand, he would “spy” on me with one eye closed and the other watching.

I cannot explain just how very special Toby was my love for him was instant and we had own our special bond already.

I was unwell myself following the birth so remained in hospital too.
On the afternoon of day five I was so drained and sleepy I returned to my room to catch a little sleep. I woke up a few hours later and was ready to go back to special care when a midwife told me the baby doctor wanted to speak with me and to remain in my room until the doctor arrived.

It was a late Friday night and I just knew something was wrong; I waited as long as I could before going down to special care to find out what was happening.
I had trouble getting onto the unit because it had been closed due to an emergency. This emergency was Tobias.

I was shown to the parents room and shortly joined by a doctor who told me Tobias was unwell they wasn't sure why but he needed support in breathing and was on cpap, as this point I was worried but understood prem babies struggle sometimes, the doctor then said I should call somebody to be with me, so I called my mum who then brought my brother.

Shortly after they arrived I was able to see Toby for a short time but not touch him, The doctor then took us into the side room and asked for permission to place Tobias on a life support machine, I agreed and told her to do what ever she needed to in order to help him. She said she thought he had a problem in his tummy and was waiting for test results but in the mean while was trying to find a bed for him in another hospital as he might need an operation and while this unit care for very early babies they did not have a surgical unit.

The Doctor later came back telling us Tobias was becoming more unwell and local units wouldn't accept him because he was so unwell. She then told me she didn't think he would make it through the night and did we want a priest to Baptise Toby.

Before I knew it I was standing next to his incubator watching Tobias being baptised with my mother and brother as god parents.

After this we were sent back to the parent’s room to wait. When we were in the parents room every moment felt like hours, there was a video player and a small TV along with some children’s tapes my brother put a tape into the player just for some kind of background noise the video was art attack from ITV I remember it being on throughout the night, I also remember the endless cups of tea I was given, both the above helped a lot and I’ll forever be grateful to my Mum and Brother for their support during these difficult hours.

The doctor came back and my heart dropped I began to cry I thought she was going to tell me he had gone, but she sat next to me taking my hand in hers and told me Tobias had picked up not allot but enough to be accepted by a professor at London's Great Ormond Street hospital for treatment, the Cats team (a special retrieval team) had been dispatched to transfer Toby but there were risks he might not make the transfer.

Everything was a mad rush and Tobias was finally on all of the team’s equipment and ready to go! It was 6.30 am on a sat morning of day six when Tobias was blue light police escorted to Great Ormond Street.

I remember my heart racing and thinking please baby hold on till mummy gets there.
I was also taken back by how very special this little boy was he was having a police car escort, but so thankful and remember how many times I kept saying "thank you, thank you so much".

After a long discharge I, my mum and brother made the journey through central London but we kept getting lost, I became very upset and when I saw a police car drive past I told mum to flash her lights I smashed my hand on the horn (police must of thought I was mad) and they stopped, after explaining it all to them and telling them I just couldn't find the way they told my mum to follow them that they were going to blue light and she was too stay close behind.
They said if mum lost them pull over and they will come back for her. I really could have kissed them! In no time we were there.

To those of you reading this that have never been to Great Ormond street let me explain this, the hospital itself is huge! But the nicest and friendliest of faces welcome you with open arms during a difficult time when your child is unwell.

When we arrived in the intensive care unit Tobias was in theatre they couldn't wait any longer we waiting on intensive care and shortly after the professor came with another doctor and nurse who told me Tobias had Necrotizing-Enterocolitis sadly Toby's bowel had died there was no part which could be saved, Tobias was also now suffering from organ failure there was nothing else they could do.

The only question now was whether to turn off the life support or allowed Toby to die at his own pace.
The hardest thing of my life ever was to tell them to take him off this machine but I wanted his morphine pump left attached to his central line just in case he was in pain, I also asked them to agree that if Tobias started to struggled to breath they would assist him in someway and not just leave him like that.

I was so frightened I wanted to run and run but as Tobias mum I couldn't and I held him in a room full of family and friends on Sat 25th of October 10.15 when he left to find heaven at just six days old.

Tobias on my request was moved back with me to our local hospital that night.
He was washed and dressed by my brave sister and placed in a car seat I carried to the ambulance.

Toby looked like any other newborn just asleep and this broke my heart walking back into our hospital where people knew no different.
If only he was just asleep I kept thinking.

I spent until Monday morning with Tobias, holding him telling him how very loved he was and how sorry I was for letting him down by not carrying him to term and his suffering because of this.
I also told him how proud I was of him and how lucky I was to be his mummy.

I took photos, bathed him with help from nurses had hand and footprints taken and dressed him in a beautiful yellow outfit.
He looked so peaceful.

We were so lucky to be given a room on special care at Hillingdon where I could do the above, (some of which had been done at Great Ormond street too i.e., photos and footprints) It gave me a chance for time alone with Tobias and I ready needed this time but was also comforted by the fact I was only a stone throw from a nurse or midwife if I had questions or needed help.

On the Monday I knew I had to say goodbye forever, Tobias had started to change and I didn’t want to remember him any different with a huge amount of support from nurses I helped get Tobias ready to go to the morgue and I carried him there too, a porter a nurse were going to do this but I didn’t feel it was right, I was Toby’s mum I needed to do this for him.

I had to hand Tobias over to the care of the nurse once we was outside the morgue walking away was the hardest things I ever had to do.

I left and went home to arrange Tobias’s farewell, I arranged two beautiful white horses and a white carriage filled with blue and white balloons and a huge teddy bear to take Tobias to his funeral.

Tobias’s funeral was peaceful and went the way I wanted it to go but just dreadfully sad and painful for everyone there.

Without the support of everyone around me before Tobias’s birth and right up until I had to say goodbye I don’t know how I would have coped.
From the admin staff, cleaners, Our wonderfully skilled yet so caring Doctors and Midwifes and Nurses at both Hillingdon Hospital, London and Great Ormond Street Hospital Thank You so very much you helped us all as a family so very much and I’ll forever be grateful.

To my wonderful family and friends I love you all so dearly you have been the best I could ever have asked for, and I’m forever grateful to each and every one of you for everything you have done for me during this painfully hard time.

R.I.P Little Angel xxxxxxxxx…..