When you pack your hospital bag ready for when your waters break (depending on how organised you are! Mine was packed from 7 months). You take it for granted that other than a few bits and bobs for yourself, an entire Mothercare store for the baby, you will not need anything else.
You assume that you will give birth and get released that day, or the following day. Do you expect to be in there for 7 days? NO. Do you expect to come home without your baby? NO. Did you expect to spend the first weeks of motherhood in a high dependency NICU? No, but we did.
The labour (check out my other post- the obligatory birth story) was good, strangely I liked it. All signs were looking good. Elijah weighed in at a whopping 8 lbs 12 oz (pause for clench). It was already agreed between myself and Greg that he would be the first one to do the feeds. Elijah was doing really well taking bottles, crying, pooing (much to Greg's horror of changing the first 'tar' poo) and sleeping.
I, on the other hand had lost a lot of blood, and began to resemble a Simpson. I was literally yellow from the amount of blood lost, being stitched up and a lady kindly pulling clots out of me with her hands like Sweeney bloody Todd. I, was completely out of it, and really can't remember much at all. I recall trying to accompany the midwife to the toilet and completely passing out on the floor. I imagined that I was in a Deaf Havana music video, the reality was waking up with no pants on to 10 or so people around me.
As time ticked on, it looked like it would be a case of me staying in without Greg which I dreaded. I was apprehensive about this from day one. I didn't know if I could do it, I couldn't even stand up, or change his nappy. How was I going to look after this little human on my own for 12 hours until Greg came back? At this point we were still in the delivery suite, it would mean moving to another ward, with other women and babies. Would I sleep? Would Elijah sleep? What if he cried all night and kept them all up?
Greg had been feeding Elijah and he had turned a dusky purple colour, but regained his pinky colour quickly. The midwife said it was likely that he took too much milk in one go. However, it happened again after Greg had gone home for the night, luckily in front of a nurse. Then again, so I buzzed the nurse. It was quick to start and then finish again. The nurse was very worried and Elijah was taken off to the NICU for assessment.
I was moved off the delivery suite to the ward, honestly, I can barely remember, I was still off my face. I think this may however have been a blessing as I didn't fully appreciate what was happening at the time. One of the Consultants came up about 1am when I had slept for about an hour or so, still off my trolley to say they examined Elijah and they thought he may have a heart murmur. Explaining it may be nothing as one of the ducts doesn't fully open up until after birth and can take time to settle down being out of the womb.
This is where I think things started going downhill and very quickly, I was moved off the main ward and into a room on my own. I was told Elijah would be admitted to NICU overnight for observation. Greg had gone to sleep so couldn't get hold of him to let him know what was happening. For all he knew Elijah was healthy and well with me. At 6am I was brought medication but everyone I asked knew nothing about what was happening to my baby. A nurse came in to take the cot for another woman and I was painfully reminded my baby wasn't with me. Greg came back up at 9am and I really wasn't strong enough but made him wheel me to see my baby.
As we began to approach to locked doors of NICU to be buzzed in we had to anti-bac our hands; I began to feel a deep sickness in the pit of my stomach. We were let in and told Elijah was in room 2. It wasn't until later we knew there were 4 rooms, 1-4, 1 being the most serious cases, 2 being high dependency and 3 and 4 for the babies that just needed a bit of extra help.
Elijah was one of 4 babies in the room in incubators with alarms, machines, doctors and wires everywhere. The babies we walked past were tiny, some had been born at 23 weeks. Elijah was triple the size of them, he couldn't really fit in the incubator properly.
This is when I fist saw my baby since he was taken away from me 12 hours after he was born.
This is the moment that is imprinted in my mind and that I have fairly regular flashbacks to, that was the worst moment of my life.
He was lying there, wires everywhere with a breathing tube and had a mask on and was being pumped air by a nurse who said he was 'being naughty and stopping breathing' as calm as you like. I was in total shock I couldn't move from the spot, looking at my precious baby who was almost unrecognisable with all the tubes and wires. The machines were loud, bright and going off everywhere. It was too much. I couldn't take it all in, I became lightheaded and nearly fainted. Greg was told to take me back to the ward.
The day passed in a blur with the consultant coming to the ward to tell us that Elijah had a serious heart defect. My whole world seem to shatter, it was not supposed to be like this was it? I was supposed to be at home with my baby and now I am being told he has Tetralogy of Fallott. They didn't know what his out look was, they would need to monitor him. I looked at Greg through the tears streaming down my face and could see like me, he was devastated. We had no control over this. The baby I grew, the baby I gave birth too, my baby.... was he going to make it?
A crude drawing and a leaflet were passed into my shaky hands by the NICU Head of Department Doctor. I read it again and again. He would need surgery. Serious, serious surgery if he didn't, he would die. It was just a matter of when. We couldn't process it. Every spare minute I would Google the condition, the operation and survivor stories. We found out a Canadian Olympian had the condition this gave us a small bit of hope.
This was pushed to the back of our minds when I was woken the next morning to another consultant at the end of my bed telling me Elijah had been having seizures and was now on anti seizure medicine to control them. We spent the day next to the side of our baby and slowly becoming used to the numerous machines, staff members and routine of room 2. I asked as many questions as I could to anyone who would answer them, I had to know what everything means so I could tell if my baby was okay. They let me sit for hours on end, and if I didn't want to talk they left me alone.
We were later pulled into a room and told Elijah had suffered a bleed on the brain and they didn't know if it was the delivery, but it was causing the seizures, however he was responding well to the meds. They didn't know if this would have an effect on his development. He may have special needs. I felt like I literally couldn't take anymore. I hadn't been eating, as I was asserting some sort of control over what I could. I pushed all my friends and family away not bearing to face what they were saying to try and comfort us.
I spent as much time as I could with Elijah, and trying to do as much as I could just to be involved. A lovely nurse really pushed this and let us take over taking his temp, bathing his eyes and mouth, changing his nappy and after much pleading from me his feeding. As they were unsure of the effect it would have on his heart Elijah didn't have a feed again until day 3 post partum. He was being hydrated by fluid via a line.
We became aware of when the consultants did their rounds, and knew this is where the decisions of care were done so we would make sure we were there and asking as many questions as we could, and pushing for whatever we thought was right. I am glad I did, pushing for Elijah to start feeding again made him stronger and this is exactly what he needed to be.
After 7 days, Elijah was still being monitored, having tests we still didn't know when he was going to come home. We fed Elijah, changed him, held him when we could. He had been taken off nearly all of his medication and no longer had breathing tubes and was maintaining healthy oxygen levels, and was in a normal cot now.
I remember thinking how normal he looked. He looked like my baby again.
He had no more seizures and was needing less and less medical help. I, on the other hand after blood transfusions and still not really eating, was not really dealing with that was happening, being in this hospital made me feel like I was going insane. I took it out on Greg, I was an emotional wreck. He didn't know how to comfort me, he didn't know what to do. I begged for him to be able to stay which the nurses let on a couple of occasions due to the circumstance they pretty much let us do what we wanted. But then I didn't want him there either.
I was becoming more and more unstable with coping being in there, that eventually it came to a head when I caught a flu bug. I therefore couldn't really be around Elijah, although the docs were happy for me to be there, I couldn't face doing anything to jeopardise his health. I made the decision to get discharged and come home. Without my baby. Was this the right thing to do? I don't know. Am I a bad mother for leaving him there? Perhaps. At the time it what I thought was the best thing to do. You have to do what is right for you and no one can tell you otherwise.
Elijah needed a MRI to check the progress of the bleed on his brain so I made Greg stay up with him as I couldn't bear him being on his own. My Uncle came and collected me, and I waddled out, not with my baby or balloons and teddies, but with my wash bag in an empty car seat. I couldn't face the looks, I couldn't face the pity. It didn't help that someone who was not made aware if the situation came to ask if I would fill in a discharge survey and 'where was my baby', 'was he coming home with me'? I broke down as she shuffled nervously back out of the room.
I went home and shut myself away on my own and cried and cried. I ignored everyone but when Greg updated me about Elijah. After much arguing Greg came home even though I wanted him to stay close by to Elijah in case anything should happen, but the nurses advised him to go.
Still ill, Greg went back to the hospital on his own, leaving me to feel like a complete failure as a mother that I was wallowing in self pity on the sofa, wondering if my son would remember me when he next saw me. Would he know I was his mother? I should have been there, I should be feeding him, I should be doing everything Greg was. In ways I resented him for it, in others, I admired him for it.
After 9 days of hell, Greg came back with a bunch of flowers for me and told me we would need the car seat tomorrow. I asked why thinking we were lending it to someone and he said Elijah had been moved down to room three and was getting discharged. I couldn't believe it, he was finally coming home.
There was a lot of discharge paperwork to do with an appointment with the consultant booked in 2 weeks time. We were told we would be discharged around 10am, at 17.00 we left the hospital with our baby.
Elijah at home was as normal as another baby of his age, he was feeding well, putting weight on and keeping us up all night! Minus the sleep deprivation of any new parent we loved it but something was hanging over us. Something we were reminded of, with any visitor, family member, friend, NICU outreach nurse, health visitor or midwife that came to see us.
He needed a operation, without this he would die.
The admission into NICU was only the start of the journey we would all have to take in the next months.