This is part 2 of a 3 part series. Part 1 can be found here.
After the whirlwind that was my classical section birth at 4am, finally at 8pm that evening I was functioning enough to be wheeled into NICU to properly meet my new son for the first time. Wow! That was confronting on so many levels. The heat from the NICU made me feel physically sick but I was determined to stay as long as possible and see my boy. To find out what I could about all these tubes wires and machines keeping him alive. It was noisy, bright and there were SO MANY BABIES! I think the thing that shocked me most about NICU was the sheer number of tiny babies being supported and kept alive by the amazing staff and technology in the NICU. After a very short period I couldn't physically stay there any longer, it was time to return to my room. Adison was ventilated but stable. They were treating him with prophylactic antibiotics as they felt he may have an infection and he was moving about, flapping his little arms and legs in his incubator. In spite of all this Doctors had ordered feeds of 1ml of breastmilk per hour as tolerated in a bid to prime his gut. We had also been approached to participate in two research studies which we consented to. One was on genetic prediction of preterm birth, the other was on the type of lipids given in the NICU.
The next couple of days were about recovery for me and progress for Adison. On day 3 the Doctors decided that Adison was breathing well enough to be taken off the ventilator and put on CPAP. My milk had come in, I was in pain and was an emotional wreck. My husband and children were staying with my parents. 2 of my kids were sick. As I shuffled past the nurses station, holding the wall to help me balance and hunched over because the pain was too great, but struggling on because there was no one to wheel me to NICU a nurse popped her head out the window and said, "I think we'll send you home this afternoon." I burst into tears and continued to walk to the NICU. I could not contain myself, my thoughts. How could they possibly discharge me when I can't even walk properly and my baby is in the NICU? Where will I go? Home is 2 hours away. How will I possibly look after my other children when I can't even look after myself? It was all too much. When I got to the NICU I couldn't say a word. I sat quietly and watched my baby and cried. I returned to my room and was visited by an admin staff member and we had an argument about me staying 1 more night. In the end I won. I stayed 1 further night and was discharged the following morning.
As a rural mother I was offered accommodation at Agnes Walsh House. I had never heard of the facility before, in fact I had never set foot on the hospital grounds until wheeled in by the ambos just days before. I wasn't sure what the accommodation was like, what it cost, where it even was. I asked for information, a hand out, anything, nothing came. All I could find out was that it was for mothers only.
On day 4 I had my stitches removed and was discharged from hospital. I went home to my parents house in the northern suburbs of Perth. Adison was initially doing well on CPAP but as the days went on he moved less and less, he was struggling more and more. On the evening of Day 6 I called the night staff before going to bed to check how he was doing. This had become part of my routine. The nurse looking after him said, "I'd be lying if i said he was doing well."
No words can describe the terror you feel when you hear words like that. Overnight Adison became worse, at that point they didn't know what was wrong but suspected some kind of infection. He was ventilated again and blood tests and a lumbar puncture revealed he had contracted a very nasty infection, heamophilous influenza which was now ravaging his body. So we waited, watched and hoped. Adison was pumped full of antibiotics, received the first of three blood transfusions and was on minimal handling to give his body every chance of recovery.
Slowly he started to regain some of his strength and his CRP levels came down. The treatment was working and he was getting better. Finally on day 18 I had my very first cuddle with my baby boy. Words can't describe how I felt. At one point I thought that moment would never come. I had sat by his bed and quietly whispered to him that it was ok, that if the fight was too great, it was ok for him to go, I would not make him suffer.
After three false starts over the coming week and 2 further lumbar punctures Adison finally made it off the vent and back onto CPAP. Things were looking up. He was tolerating his feeds and most importantly he was putting on weight and growing.
On the morning of day 28 I walked into the nursery and was surprised to see a big open cot in Adison's bay. I immediately assumed Adison must have been moved overnight but thought I would just walk down to his bay to check.
To my surprise Adison had been taken out of his incubator overnight has he had progressively got hotter over the previous 24 hours and there was nothing to indicate that he had an infection. They had turned his incubator off and opened all of the portholes and he was still hot. They were left with no other options than to take him out of the incubator and into an open cot. He had only just hit 1kg and I was told normally they waited a bit longer than that but Adison wanted out. He had just moved onto full feeds which he was tolerating well and his TPN had finally been removed. My baby was IV free for the first time in his short little life.
After 7 weeks of visiting the NICU daily it had become so routine that I had to remind myself that it was an intensive care unit. My baby was growing but he was still requiring a lot of breathing support to keep him alive. Without CPAP he was not maintaining his oxygen saturations. Adison had become the healthiest baby in the NICU and there was rumour that he would be moved out to HDU (High Dependency Unit) that rumour was right and later that week he was moved. I was so anxious about the unknown, but my fears were allayed, HDU was lovely and the staff just as friendly as the NICU. Some of them the same faces.
Many more weeks went past and the biggest hurdle we faced was breathing. Adison really wasn't ready to move off CPAP. His head was suffering terribly from being squashed by his CPAP hat and it was decided that his head needed a break and he would be tried on PBF oxygen to give his head a rest. It was decided they would try for 1 hour every other day to begin with and add foam inserts into his hat to protect his head more from the CPAP. It was at this time that Adison began non-nutritive sucking where I would express off my milk and offer an empty breast for him to nuzzle. He was so keen but could only manage 3 or 4 sucks before wearing himself out.
My husband was yet to cuddle Adison. He had returned to work in Bunbury so was only visiting on weekends. Between juggling our 3 other children at the weekend and visiting Adison we'd not been to visit him together at all. We finally made arrangements and Russell had his first cuddle. Wow, what a way to get the emotions flowing that was!
Christmas was rapidly approaching and poor Adison seemed stuck. He was still cycling off CPAP and onto PBF, he'd had a few set backs going back to full-time CPAP. He'd needed another blood transfusion and was having a few breastfeeds here and there but was wearing himself out too quickly. It was a waiting game yet again, and then quite quickly he decided to get a wriggle on!
He managed to move off CPAP onto PBF and get a proper bath for the first time! We was sucking more feeds and the door was looking closer and closer. He moved from his big white cot into a smaller wire basket, passed his newborn hearing screen and continued sucking more feeds.
But of course there is always a hitch with getting these little ones home. Adison had an ingroinal hernia and as it was Christmas break there were no surgeons at PMH who could operate and he was not to be discharged without the repair. So we waited, and waited. Then he needed an extra eye exam, so we waited for that too. In the end the Drs made arrangements for 3 babies to have surgery at PMH as they were all ready to go home and just waiting on hernia repairs to get out the door. A lovely Dr returned from Christmas break early and conducted all of their surgeries.
Finally on January 8, 2 days before his due date and 100 days after he was born we left KEMH NICU in Perth and headed for home back to Australind. We thought the worst was over, that now we would watch our baby flourish, but things change fast!
Part 3 of Adison's story can be found here
If you would like to share your NICU story with our community please get in touch via our personal experiences page. Your stories help people through their own journey to know that they are not alone and that in spite of all of the obstacles facing their baby these little ones are true warriors.
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