I had to wait for ages to get stitches and get sorted out after Zoe went up to NICU. They had some difficulty getting my placenta out. Apparently it had taken too long, which scored me another bag of syntocinon and a catheter. I remember lying there and right ahead of me on the wall was a sign promoting skin to skin with your new baby ‘within the first hour’, and thinking, yeah right. At some point Mike came back down with one of the NICU doctors who was very lovely and told me everything that had happened, although I don’t remember much of it. I was keen to get up and get going as I knew it’d make me feel better, and I wanted to see my baby, although I was scared at what I was going to find.
It was roughly about five hours after she was born that I finally made it upstairs. She was at the end of a row of cots in NICU. I think I might let the picture tell a lot of a story- this was taken soon after I first saw her. The most beautiful little baby- looking just like her older sister had at this age.
She wasn’t doing well though. Her lungs were small and undeveloped (pulmonary hypoplasia) Kidneys looked similar to how they had on all antenatal ultrasounds- cystic and like they weren’t doing much. Bilateral pneumothoraxes. Requiring high pressures on the ventilator. Nitric oxide and HFO. Pulmonary hypertension. Hypoglycemia. Hypotension requiring inotropes. I won’t explain all of them, but none of them are good.
The first night she was alive one of the NICU consultants came down to talk to us. You know it’s bad when they come to find you in the postnatal ward. She had had an episode where she had crashed. They’d managed to sort her out, but she wasn’t doing well. I’m not sure how many times I rang up over the course of that night. The second day we got told basically the same thing. They were happy to give her a bit more time to see how she did, but they didn’t think she was going to make it. In the meantime she was showing us that her kidneys really weren’t going to do the job on their own. She was passing a tiny amount of urine, but not enough, and it looked like water- it wasn’t clearing any toxins. Her urea and creatinine (two blood results which are indicators of kidney function), were going up- an indicator of kidney failure. She was becoming puffier and puffier with all the fluid she was retaining.
They managed to reduce her ventilation a bit the following day, Friday. Then later that day one of the renal doctors wanted to talk to us. We walked in numbly expecting that they were going to say that her issues were too many and they couldn’t do anything for her. Amazingly enough- he said that as her lungs had improved, she could have a chance. However, they’d need to start dialysis soon for that. We couldn’t believe it, although we were also concerned. Being a nurse for several years I’d seen a lot of cases where medical treatment and interventions were carried on and on regardless of the outcome being inevitably poor. I didn’t want to prolong her life if it meant a lot of pain and suffering on her part. We prayed about it and I could hear quite clearly “Zoe means life.” Mike also had something similar confirming what to do come into his mind. We decided to go ahead and start her on dialysis.
They were hoping to get a catheter put in on Sunday, and hold off until Monday or later to start dialysis. Zoe was to be started on peritoneal dialysis- not the type you normally see in the movies, where they sit in chairs connected up to machines. It’s too hard finding access (ie. a vein) in small children and this type of dialysis is one that can be done at home eventually. However, with her urea rising – it was 25, which is about five times what it should be- they got the catheter put in Saturday afternoon and she started dialysis Sunday afternoon.
Sunday afternoon we were also moved out of NICU and across to paediatric ICU, which was a familiar environment to me as I’d worked in a similar ward in Brisbane.
We were blown away by how well Zoe’s dialysis was working. Her urea and creatinine became coming down, slowly at first, but speeding up after a bit more than a week on dialysis. She became less puffy as the fluid was removed and in the following couple of days we were able to see her open her little eyes.
In the meantime her lungs had most definitely improved, and she was extubated on Tuesday. She was on normal room air after half an hour, with no extra oxygen required. She had slightly increased work of breathing for a little while, and some stridor for the rest of the week (that was a specific answer to prayer- I was really concerned about her continuing stridor and sent out prayer requests for that specifically), but that all disappeared and they currently have no concerns with her respiratory wise.
With her responding so well to dialysis they were able to start Zoe on some nasogastric feeds (via a tube in her nose that runs down into her tummy) on Tuesday afternoon. It wasn’t a lot- 5 mls every 4 hours- but she tolerated that really well and that was increased quickly. Up until that point, the poor baby had had a grand total of 6mls of milk over the first week of her life. Tuesday I also got to hold her for the first time, at 6 days old. I cried my eyes out. It had been a long week coming. I wouldn’t have put her back (except they wanted her back for bloods so gave me a time limit). I got about two hours holding her but would happily have sat there all night. Zoe liked being held and got upset when they put her back in her cot. She still gets upset when she gets put back in her cot. I think she’s still trying to make up for the lack of cuddles in her first week.
Meanwhile, I’d been discharged from the postnatal ward on Saturday. I’d tried to leave on Friday but they seemed to want to keep me. I’m not too sure why as I didn’t have a baby with me and wasn’t getting any help with any of the ‘new baby’ things that everyone else on the ward was getting. Fortunately (or mercifully) they’d given me a room to myself so I didn’t have to watch other people with their babies or get woken up by other people’s babies. In the meantime we had been really blessed and gotten a room at Ronald McDonald house, which was much nicer, and closer, than where we’d been staying previously. Parents had gone home by this stage and that week it was us and our friend Jenaya who had taken two weeks off work to come down and help us with the girls. Annika absolutely loves her (although she wondered why she hadn’t brought her daughter E along for her to play with) so that was another big blessing.
Zoe continued to improve that week. I got to try to breastfeed her on the Friday, which didn’t work out too well with Zoe not knowing what to do and really not knowing how to suck, having made it to nine days without feeding orally. No one really knew what to do to help me although they certainly were very lovely and tried to help as much as they could. They got a lactation consultant down to help me, who stayed about five minutes, gave me about 20 things to do none of which I remembered, told me Zoe didn’t have a good suck (which I already knew) and left again leaving me feeling like this was never going to work. I kept persisting and they got someone to come and help me the following week who was much better and actually sat down and helped me. We’re still working on it. The problem is that Zoe’s on second hourly nasogastric feeds which keeps her full, so she’s not interested in feeding most of the time. Occasionally I can get her interested but she either gets tired easily, or loses interest when she has to work to get a letdown. It’s fair enough- all she’s really known is her nasogastric feeds which she doesn’t have to do any work for!
We stayed in PICU just over two weeks, until 20 October, when they moved us to the ward. We could have gone earlier but they needed to train the ward staff on looking after Zoe’s dialysis (which I’m going to refer to as PD from now on) and they didn’t have many other patients so weren’t in a hurry to move her.