Once milk had been expressed it would labelled with the baby's name, nursery number, date and time. It could then be stored in the fridge or freezer until it was taken out by whoever was preparing the naso gastric tube feed at that time. Sam was still being weighed daily and his weight wasn't increasing as much as the medics had hoped that it would. I arrived one morning to prepare his feed for his tube and was handed a powdered sachet and told that it needed to be added to his feed. It was a high calorie fortifier and needed to be added to boost the calorie content of my breast milk. I put the feed down his tube and then went into the expressing room and cried. It seemed, at the time to me, so unfair that not only was my body unable to sustain him in pregnancy but my milk, that should sustain him, was too low calorie to do so. I began to feel more and more redundant. This was nothing like I had imagined having a baby would be like. I had had dreams of bringing home my fluffy little bundle who would, of course, sleep through the night straight away and be a joy to everyone around him. Instead, my friends hadn't even met him. I hadn't held him for more than a couple of minutes at a time, I couldn't choose new and exciting clothes for him to wear and I couldn't take him out to cafes to while away the morning with a book as I had imagined. And now, the milk that I was so proud of producing wasn't enough to sustain him. I spoke with the breast feeding coordinator who explained to me that what was happening was very common. She told me how well I was doing to express any milk at all and how this would really help his immune system. She also explained that having a premature baby triggers a grieving process. Grieving for the experience you had hoped for, and should have had. I was so pleased that she was normalising what I was feeling and tried hard to cling to her words.
The following day I was able to put Sam's milk into a bottle for him to have instead of down his feeding tube! As far as I was concerned this was the biggest step yet! I actually felt like I was doing something that a normal mother would do with a normal baby. He took 10ml from the bottle which was a huge amount! The rest of his feeds that day were put down his tube to avoid tiring him out too much and expending too many calories. I didn't care how many feeds he had from a bottle that day; he had taken milk from a bottle which meant he was one step further to having the tube removed and coming home. I couldn't have been happier and spent the rest of the day looking at the photograph that had been taken of him having his bottle!
A couple of days later Sam was weighed but his weight gain was a lot less that they had wanted it to be. It was explained to us that until he gained more weight he wouldn't be able to maintain his body temperature and as a result wouldn't be able to come out of his incubator. Calories were being burnt through bottle feeding and it was decided that the majority of his feeds would be given to him down his naso gastric tube until his weight gain had improved. Although I was still able to give him a couple of bottles a day I felt like this was a huge kick and a big step in the wrong direction. I desperately wanted to see Sam come out of his incubator and into a heated cot but it seemed impossible. Even though I was aware that there were far sicker babies than Sam in the nursery, all I could focus on was what was wrong with Sam. I hated having to look a him through his incubator and hated having to rely on his tube to feed him. I hated how weak he was and that there was always someone there to tell me that he needed to go back in his incubator to rest when all I wanted to do was cuddle him. I hated that I still hadn't heard him cry and that he very rarely opened his eyes. He was still so tiny and so weak and I knew that this is not what having a baby should be like.
Finally, Sam had gained enough weight to be transferred from his incubator to a 'hot cot' which is a heated cot that helps babies to maintain their own body temperatures. He was also taken off the heart and breathing monitors. Although we knew that it was a step in the right direction this was incredibly scary for both of us. I kept worrying that he would stop breathing or that his heart rate would dip and no one would notice. I couldn't stop thinking about it. As I sat next to his cot I would place my hand gently on his chest to check that he was breathing and would even find myself holding his wrist to feel his pulse. The thought of his heart or breathing stopping were with my the whole time. It was explained to us that, although such thoughts were normal, Sam wouldn't be able to come home with the monitors so we needed to get used to not having them. We were also told that he would be transferred to 'the nursery' which was to be the last step before home. In the nursery the nurses would work on getting Sam to take all his feeds from a bottle, so that the tube could be removed, and maintaining a consistent body temperature and weight gain so that he could come home. I took this as encouraging news and knew that we had to work hard, with the nurses, to reach these goals. However, a couple of days later things took a turn for the worse. Sam had been really hungry and had been feeding from his bottle very well and even waking up to demand more feeds! Because of his tiny size, and therefore the tiny size of his stomach, although he was still hungry we could not give him extra feeds as we would risk overloading his stomach. As a compromise it was decided that his feeds would be stretched from three to four hourly so that he could take larger amounts. This initially seemed to work but over the course of the next couple of days he began to get very tired and by the Friday afternoon he was exhausted and largely unresponsive. It was decided that he would be put back on three hourly feeds and would also be put bacon the nasogastric tube. I remember being absolutely devastated. It felt like such a blow. I found the tube so invasive and clinical and felt redundant when it came to feeding my baby. It felt, to me at the time, that we were back to square one and I began to have somewhat irrational thoughts of having to bring him home on a feeding tube!
We reintroduced his bottle feeds gradually over the next couple of days and watched his weight increase. He even began demand feeding! Discharge meetings came and went and after each meeting I expected to get the news that we could take Sam home. The news didn't come and I began to feel the weight of having a baby in special care. I can't remember any of life outside special care during those weeks and had somewhat begun to feel comfortable there. Our daily routine for weeks revolved around chatting to nurses and building relationships with other special care parents. When John went back to work I began to spend my whole days in special care as I still couldn't drive, due to the C-Section, and I began to look forward to seeing the friends I had made there more and more. Even though I was desperate for Sam to be discharged, and it was all I could think of, I was apprehensive about leaving special care, and the relationships we had made, there behind.
Eventually, as Sam became stronger and the transition home looked more imminent we were able to spend two days and two nights in the family room with Sam to prepare us for going home. The family room was a small 'hotel like' room with a bed, a cot, a TV, a breast pump and tea and coffee making facilities. I was more excited about the 'on tap' tea and coffee than I was about the ensuite! Two days and two nights without nurses milling around us constantly and two days and two nights with coffee making facilities in the same room as Sam. I, for the first time, was introduced to daytime TV and was able to watch it whilst I held Sam and fed him. Simple things, but such a novelty. Although we were kept awake by every little grunt and groan he made and every breath he took, we loved finally spending the night with him - and playing at being a real family. Although I had thoroughly looked forward to this it was a tiring two days. Sam still needed the fortifier in his milk so I was unable to breast feed him. I sat and made notes and draft schedules in my journal to work out how best to juggle expressing, bottle feeding him expressed milk and continue 'normal' things like cooking and cleaning once we returned home. As John was at work it was generally just me and Sam in the family room with no one to curb my obsessive nature and I ended up with pages of drafted routines and schedules, none of which seemed to work. Once John returned to the family room from work on the following evening I went to share my concerns with one of the nurses. I couldn't understand how I could possibly spend half an hour expressing and half an hour bottle feeding every 3 hours. It had even exhausted me in the family room without having anything else to do. I then realised that the fortifier wasn't approved for community use and Sam would need to be supplemented with formula anyway to help him gain weight. It all seemed completely overwhelming and, with the support of the nurse, I made what I believe was the most sensible decision of our time in special care and decided to wean Sam off breast milk and on to formula. There are still times when I look back and wonder if I gave up too early but I know that I spent over 4 weeks of my life painfully expressing milk every couple of hours to put down Sam's feeding tube and there was no way that I could realistically do this all day and all night at home, plus bottle feed him and supplement his feeds with formula. I have spoken to other friends who have had premature babies who feel the same. Once I made this decision and began to increase his formula feeds and decrease his expressed milk feeds it was as if a weight had been lifted off my shoulders!
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