They even showed a video of how the tubing is inserted into someones stomach, including the incision into the skin, there was blood and endoscopic video. On a few occasions I had to turn away from the screen. I kept reliving people doing all that to my baby.
Thomas had a gastrostomy because his oesophagus was not joined to his stomach until he was 15 weeks old.
Thomas had major surgery on 2 occasions and he had about another 6 different surgical procedures, and there was always an IV line to re-insert after the last IVs vein had shut down. I didn't get used to it and I didn't cope very well with watching people make holes in my baby. I didn't like seeing him covered in Betadine after surgery, or with blood on dressings, or with medical debris or blood on his sheets. I felt very distressed by it. I liked his bed cleaned up as soon as possible, his skin washed, I liked to replace dressings as soon as it was allowed.
I knew that I had to be strong, but there are some things that I was not strong enough for. Generally it was blood that I was most upset by.
I have two sets of photos of Thomas. There are the nice ones, and there are the nightmare ones. In the distress of those moments I would take photos. I used to say that when he grows up he will never believe all the fuss that was being made of him, and that's why the photos. But really it was because I couldn't look, I could hide behind the camera. If I wanted to see later, I could just look at the pictures. I haven't wanted to. I won't post one for you to see either.
It was often a nightmare, watching him be prepared for surgery, being informed of everything that could go wrong during surgery, seeing him post surgery when he was so sedated, meeting with doctors, even being there for rounds was harrowing. When the doctors would gather round his bed for rounds, they would list all of Thomas' diagnosis. Sometimes they would surprise me with one, like this one, for a few weeks they described him as being opiate dependent.
In the training course that I went to yesterday, they talked about how meals form a major part of how we show love and nurture our loved ones. Giving food is related to giving love, so when someone has a gastrostomy, that loving part of our relationship changes to a medical procedure. They explained that parent will often exert themselves in another area to make up for losing the normality of feeding their child.
I just didn't know how to be the mummy of a baby in intensive care. I couldn't feed him, I usually couldn't hold him, he didn't cry (because of all the tubes in his mouth and throat), some days the only normal baby activity was to change a nappy. Really there was nothing normal about that either as Thomas usually had IV lines inserted in his groin, complete with dressings and etc it was a very careful nappy change. Mostly I just waited.
I growled at nurses and complained a lot. Even then the staff still encouraged me. They didn't get upset with me. They knew that I was advocating for a very sick little boy. I was his voice. I wanted him to be treated like a person who mattered, which he was. Some of the staff treated him like a person who was special, and at least a few treated him like a person who was treasured. I still cry when I think of how those people made Thomas' time in the NICU and my life bearable. They empowered me and encouraged me to stake a claim in shaping Thomas' care plan, and helped me be his mummy.
I was asked to share one good thing about my baby at the last group I attended. I didn't want to say the one good thing that I could think of was that he was cute. He was more than cute. So I said that he opened his eyes when he heard my voice. It doesn't sound like very much. I know that most of the baby lost mamas who blog would say that it would be their dream, their miracle. But in saying that one good thing about Thomas was that he responded to my voice by opening his eyes, it didn't seem like much at the time. Especially when the other parents were saying that their child was always joking or they never let their illness get them down, they had an infectious smile, they put people at ease. They seemed like much more significant things than opening eyes.
I know it was more than just opening his eyes. It meant that he knows me. It meant that he felt safe with me, it meant that he knew I am a good thing in his life, he knew I am his Mummy. The atmosphere in the NICU is so unnatural, the babies are attached to machines, recovering from surgery, overstimulated by all the busyness and alarms and lights that they simply have to shut their eyes to block it all out. I know that often Thomas would be awake but he would have his eyes shut. I could tell from the heart rate monitor if he was asleep.
It made me feel better to know that he loved me.
I am glad I read "The House at Pooh Corner" to him, that I bought him Cd's and played them to him. I am glad that I made him toys that he loved, and decorated his cot with a mobile and hanging toys. I made him a string of bells that would jingle when he touched them (even when it was me moving his arm so that he reached out). I am glad I did all those things. It was a way of me being his mummy when it was all so way out of control.