zoe abigail. part 3

We moved down to the babies ward, Rose Ward, on the 20th of October. It really hasn’t been any change from PICU as Zoe’s still 1:1. Her dialysis is too time consuming for a nurse to look after any more patients. She’s done really well over the last week or so. Her urea’s come down to 6.8 today. This is the blood result that the renal doctors are really concerned about, as this can affect growth and development. They’d like it to sit at about 10, which is still higher than what a person with healthy kidneys would have, but is a good level for a child with renal failure. She hasn’t looked puffy for a good while now. She passes some small amounts of urine, which, although good, I’ve been told not to get too excited about. She still has an issue with hypernatremia- low sodium- so she’s on sodium supplements for that. She also has low calcium, which is apparently a common issue in kidney kids, so she also takes calcium and vitamin D supplements, and has an injection of erythropoietin once a week to encourage production of red blood cells- children with kidney issues often have low haemoglobin (the oxygen carrying protein in red blood cells) levels.

As of last Friday the 24th, we’ve been able to have some breaks from dialysis. They started off with four hours on Friday and, as her blood results looked good still, trialled her with an 8 hour (!!) break today. I’m praying her blood results stay looking good so we can keep these 8 hour breaks. It’s wonderful, I felt like I had enough time to take her out and do something, come home, eat lunch..and so on…without needing to rush back. I love taking her out and feeling ‘normal’ so to speak, for a few hours. There are still plenty of reminders that it’s not ‘normal’- her NG tube and her PD catheter are immediate giveaways! As are her tube feeds. It’s almost impossible to disguise holding a syringe attached to a NG tube up in the air.

Zoe’s got a long road ahead of her still. I get really upset and overwhelmed at times thinking about it all. Basically we’ve been told that she will probably need to stay in hospital for six months- so roughly until next Easter. This is to give her time to, firstly, grow enough to allow them to start her on overnight PD only. She needs to be big enough to allow them to put larger volumes in to enable this to happen. She also needs to be big enough- about the size of an average six month old- to go on the automatic PD machine they want to send us home on. Hourly PD cycles with clamping and unclamping the tubing three times an hour just aren’t feasible for us to do round the clock at home.

Ultimately her aim is to put on enough weight for a kidney transplant. She’d probably need to be a minimum of 18 months for that, but it seems that a bit older than that is more common. Following that, she’d need to be on immunosuppressants for the rest of her life to stop her body rejecting the transplant, as well as likely needing blood pressure medications as well (as the kidneys play a huge role in regulating BP). A transplant doesn’t last forever though and it’s likely she would need another transplant by her 20’s at least.

One thing about a kidney transplant is that it’s possible for one of us to donate to her, provided one of us is a match. That’s reassuring in a way that we might not have to wait for one to become available, but even then there’s so many questions. Obviously you can only donate once- what if only one of us was a match with her, do we donate the kidney now while she’s small and let the future sort itself out later or keep ourselves for later on down the track when she might need another transplant more urgently? Given that she’ll likely need more than one transplant over the course of her life. These are questions that there’s no point in worrying about right now, when we don’t even know if we’ll make it as far as a transplant, but it’s hard to stop myself from driving myself nuts thinking about it.

It’s Zoe’s due date this week. She would have been due somewhere between the 26th (my calculated date) and tomorrow, the 30th (based on an early scan). It seems so surreal that I would only be due now, and, given as how I went a week over with Annika, would probably still be pregnant for another good week yet.  Sometimes I wonder what would have happened if we hadn’t found out about her kidneys. If I’d been having kids forty years ago I wouldn’t have known until she was born. I’m glad we did know though. Sure, I would have actually enjoyed my pregnancy, but I can’t imagine having the house all set up for a baby, going into hospital expecting to have an uncomplicated delivery and to be discharged in four hours, and then finding out about all this. It would have been worse as, if she had survived, we’d have ended up getting retrieved to Adelaide and I don’t even want to imagine how horrible that would have all been, going through all that unexpectedly after giving birth.

I’ve become so attached to Zoe. I didn’t bond with her before she was born, and I think I kept myself from doing that as a form of protection. I feel horrible about doing that now. She is the most beautiful little thing and I have just fallen so in love with her. It scares me a lot- I know she might have made it this far, but I still know how far she has to go, and I’m scared that I might have to say goodbye to her a long time before I want to. Not that I ever want to. I just want to hold her and never let her go.

IMG_4020[1]

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

Psalm 121

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zoe abigail. part 2

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. IMG_4024[1]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.

zoe abigail. part 1

Time for an update, I think….a very LONG update. What with everything that’s happened the last month, I haven’t had the energy to write. It’s been all I could take just emotionally keeping myself on top of everything and keeping up with it all.

Our girly vibe turned out to be right. Meet Zoe Abigail – born 1 October, 2014 at 4:54am.

29 September we packed up the car and drove down to Adelaide. It was quite strange thinking we were driving down to Adelaide to have a baby but, apart from me being obviously pregnant, there was almost no baby gear in the car. Apart from the car seat and double pram, which I’d bought in the very early days of my pregnancy before we got Zoe’s diagnosis, I hadn’t bought anything up until a few days beforehand. In a sudden panic that I might actually need baby gear and might end up looking like a lousy parent who hadn’t gotten anything organized, I bought a couple of jumpsuits and the smallest packet of newborn nappies I could find. I didn’t pack the car seat though. The thought of maybe having to drive home with it empty was more than I could handle. The clothes and nappies, I figured, I could just throw in the nearest Lifeline bin.

We made it down eventually, sorted out where we were staying, unpacked the car, found somewhere to park, did a few things we needed to do like go to the post office…by this time it was late afternoon and we were both exhausted. I had to head in at six thirty. My mum was coming down but as she wasn’t arriving until nine, and Annika was exhausted as well, I headed up to the hospital by myself.

When I got there I got told that there had been a change of plan- upon discussion that day it had been decided that I needed steroids prior to being induced to help with baby’s breathing. They originally hadn’t thought I needed them due to me being over the 36 week mark, but given that there was a high chance of baby having respiratory problems, the final verdict was that they would likely be beneficial. The only issue was that they needed to give two doses 24 hours apart, so they wanted to give the first dose now and give the second dose and induce the following night. I was pretty upset at first, as I’d really psyched myself up for going in tonight and getting the whole process started and hopefully over soon, and annoyed with myself for not having asked again and double checked that they didn’t want me to have them, as I could have gotten the first dose in Port Pirie the previous night if I’d known.  I made myself get over it though, got the first dose (most painful IM injection ever) and called Mike to say I was coming back.

To be honest, I ended up being so, so glad they decided to give the steroids. Not only because Zoe did have major respiratory issues, but I got to go home, have a good sleep, a relaxing day the next day with an attempted afternoon nap, and came back into hospital at 6:30 the following night feeling refreshed, which turned out to be another good thing as I didn’t sleep at all that night. Funny sometimes how what I can initially see as an inconvenience turns out to be something that I end up being grateful for isn’t it? Luckily God knows these things better than I do!

Zoe’s birth didn’t go to plan. The original plan was to insert a (nasty sounding) balloon catheter overnight, then start the drip the following morning, hopefully to have her born in the daylight hours! That didn’t work out when no one could get the balloon catheter in. I had no amniotic fluid and Zoe was sitting so low she had her head right up against my cervix. Four attempts  from four different people later, each one getting more painful, with the last one (where they tried to move my cervix forward) so painful I needed gas, it was decided that wasn’t going to work. In the process of trying to put the balloon catheter in they’d also dilated me enough to break my waters (or what there was of them) so they got broken and I got the drip started soon afterwards. They were a bit reluctant to turn it up very quickly, as Zoe’s heart rate kept dropping with each contraction. It was very different to Annika’s birth, where I’d been able to move around and do what I needed to as it progressed, hadn’t needed any gas until 9cm, and had stayed in the shower for the last part of it. With constant CTG monitoring and the drip I had about half a square metre to move around in, shower was out of the question, and it felt like it was taking forever- I asked for gas at 3am when I was about 3cm dilated. I felt like a bit of a wimp as I had gotten so much further without it last time, but it was just going so slowly and painfully! At 4am they checked again to put a scalp monitor on Zoe and told me I was 4cm. I burst into tears as it was really painful and I thought I would have been far further along than that! I asked for an epidural about ten minutes after that, thinking I couldn’t go on like this for hours. The next twenty minutes was a nightmare. I was crying that I couldn’t keep going. One of the midwives tried to console me by telling me I would be holding my baby soon, which was probably the worst thing she could have said. Twenty minutes later I felt like I needed to push but thought my mind might be playing tricks on me. I saw the anesthetist walk in at that moment and they told me to get back on the bed. I asked if they could check me again first and, sure enough- I was fully dilated.

The next thing I knew there were about 20 people and a NICU crash trolley in the room while I pushed her out- that part was the only bit that was easier second time around. Just as I started pushing I remember thinking, these are the last few moments you’ll have her safe inside you.

I think I just collapsed afterwards. I didn’t hear a cry or anything. The umbilical cord was cut so fast I didn’t even notice them do it and she was taken over to the resus table. I remember Mike’s face lit up and I could hear the delight in his voice as he said “It’s a girl!” and I realized, oh yeah, we didn’t know the sex- I’d forgotten about that bit. Someone pointed over and said “there’s your baby” but all I could see was the backs of a lot of people’s heads. Then one of the NICU doctors came over and said she was having difficulty breathing and they were going to take her to NICU and intubate. I vaguely remember nodding and Mike asking me if I was still wanting to call her Zoe. I nodded. I’d secretly been hoping for a girl so we could use that name. Mike went with them to NICU. I briefly touched a tiny blue hand as she was wheeled out the door. I can’t remember seeing the rest of her prior to NICU. There must have been too much equipment on her and too many people around her.