I thought I'd do this post in Black and White to celebrate. For a change.
And they're not the only ones who've been kicking goals.....(seamless link....)
WE'VE GOT THE NASOGASTRIC TUBE OUT!!!!
I don't know how much I've been chronicling (that word just looks wrong, but spellchecker's letting it through) Jacinta's feeding issues...aside from on facebook that is. The 'expressing' posts were getting to a point where they almost outnumbered the 'where did my sleep go?' posts.
From the first hour of her life she was on a nasogastric tube. That was the first tiny kick in the guts for me, the point where I relinquished control of her care - temporarily. Not being able to ensure that what entered my baby's body and how was entirely up to me was a massive shift when my older children had been exclusively breastfed until solids, skipped the birth Hep B shot (since they weren't going to creche and we were advised that it really wasn't necessary in that case) and had the Vit K orally.
So through all the NICU and Special Care time, the goal was always to go home without the NG tube. Trouble was that she was a really good sleeper. My little munchkin's been sleeping through from birth. Sometimes that meant sleeping through the whole day when her body clock was on England time, but there was always a 12 or so hour period where she would not be woken for love or money. We never actually offered her money, but there was always plenty of love on offer!
When she was discharged from the Women's at four weeks of age, it was to Box Hill with the intention of getting her off the tube then home. This dragged on for 10 days until we very strongly hinted that we would prefer it if we could go home now and we'd just do the tube thing. Some people do the hospital for months and they have to, but we had had enough. We gave it a try to see if I could possibly wake her for feeding overnight since they did try the bottle each night but didn't get much action, but she wasn't having a bar of it.
So we were finally discharged not long after a conversation where the Nurse Unit Manager said "we really DO understand that you want to take her home as soon as possible..." since it really felt to us like the message wasn't getting through and we did have to ask obvious questions like " so if she's going home with the NG tube and she needs to see the heart specialist at the Children's on Thursday and we need 24 hours to get it organised and it's now Tuesday, why are we talking about discharging on Friday?" To which the reply was, "oh yes, I suppose we could discharge you on Thursday morning...", which was better than Friday!
Sometimes in health care things do go round and round in circles if you're not watching out and taking a bit of control of things yourself. If everyone's being cautious and waiting for everyone else to decide, things can take a lot longer than they have to.
So we went home with the NG tube still in, I was expressing every 3-4 hours (which took about 40 mins), feeding her (40 mins) and topping up by tube (which took 30-60 mins depending on how many interruptions there were) every 3-4 hours. She lost weight. She lost weight. Then she didn't lose weight, but she didn't gain any. We had the midwives coming out from the hospital to weigh her every couple of days.
It was a little frustrating, since we were having to go backwards. When we were discharged, we'd finally made it to fully breastfeeding with little or no topping up via the tube. This started reversing to more and more topping up and less and less breastfeeding. We had some gains again here and there and always when I documented every feed, how long, how many mls, every wee & poo. We worked out a basic formula and went on from there, with the MCH nurse now, and she started losing weight again. Started keeping strict records and we went up again, then all hope went out the window when she got a cold and we were back onto pretty much full NG feeds with a token breastfeed of about 5 mins once a day to keep in practise. It was about this point where I feebly asked the cardiologist if it looked like losing the tube had been put on the back burner and he said it would have to wait til after the surgery. Sigh.
From that point she started on diuretic medication too which also made her lose weight so the paediatrician stepped in and prescribed poly-joule (which I just can't stop myself calling polyjuice - Harry Potter tragic!), which is basically powdered junk food designed to make you put on weight. This was to be added to her EBM (which we all remember is what we call breast milk) at one scoop per 50ml. She told me to watch out for diarrhoea. I looked at the amount I was putting into her feeds once I got it home and thought it seemed a lot.
She woke up the morning after I started supplementing looking a little bit like a drug addict. Dark circles under her eyes, not brilliantly alert. I queried this amount with the MCH nurse. She rang the home base (she visits us at home) who didn't have any further information on dosage. I continued to give it as prescribed. By the end of that day, I decided that she was not right and worsening and the sunkenness of her fontanelle indicated that the diarrhoea she had displayed had caused dehydration and so I whisked her off to hospital where they pumped her back up full of liquid again. Next morning she was reinflated like a jumping castle after the wind has dropped.
Since the cardiologist had been making noises about admitting her if she hadn't started gaining weight, they kept her in to sort out the whole feeding thing. The dietician indicated that normally they'd prescribe 1 scoop per 200 ml, so she'd been having 4 times the usual dose. Ooops! (The next time I saw the paediatrician she indicated that she needed to apologise for the mix-up - "one scoop, one teaspoon..". No lasting damage so we'll let that one go. She's a good Dr.)
So they sent her home and hurried up the surgery which happened the next week. After the surgery she was on about 10-15 different drugs....my toxic baby! All necessary, all very temporary. One interesting thing I learned when I asked about the morphine is that they give it after open heart surgery to stop the baby from breathing on her own so they can regulate it. Apparently that's what kills drug addicts when they overdose on heroin - they stop breathing. I guess that's just one of the questions that doesn't come up in life for most of us.
The morphine and oxy-codiene (I think that was what it was called....) combined with the diuretics to stop any fluid collecting near the lungs meant that her gut was dry as a bone and nothing was moving. We tried breastfeeding again as soon as she had enough tubes and wires out, but it was just too upsetting. She tried and would get really upset. When she was first born she would pass a bowel movement with every feed so I assumed each time it was stimulating her bowel. I could see that something was really bothering her although she clearly wanted to feed again.
Eventually after a couple of days of holding off, since I didn't want to start any neverending cycles of constipation/laxatives if it could be avoided, it got ridiculous. I think I held her pretty much 15 hours straight for two days and she wasn't feeling good at all. Crying a lot and through the tears making two distinct sounds, "mumumumum", and "owowowowow". Infer from that what you like! We gave her some lactalose down the tube, since she'd had way too much physical interference in that 24-hour period and she'd had enough. Finally, overnight, the floodgates opened.
Next morning, when she'd finally ticked the 'done a poo' box, they asked me how I felt about going home that day. I said, "not brilliant", since I hadn't anywhere near established feeding and had just spent the past two days doing nothing but holding my baby! To their credit the head Dr said, "OK, maybe tomorrow then", without a second thought and after he'd gone the nurse said, 'good answer. If you'd said it was ok, you'd be out of here today'. Phew!
Things improved a lot that day and although Jacinta wasn't feeding perfectly, still very patchy and mostly tube fed, she was much happier and we even made it downstairs to see the fishies and have a coffee.
By the next day it was pretty clear that we were in a stable condition that could be maintained at home, still with the tube (sigh) but at least I could put her down. We got the OK and were discharged at about 6pm that night. Kane and her big sisters picked us up and since it was dinner time we went down to the only thing open on the ground floor at 6pm on Saturday....McDonalds. And for the first time in months, Jacinta had a full, decent, proper feed. She actually didn't seem to need topping up. Woohoo!
So from that point on, we kind of got into a routine. I expressed still overnight to keep my supply going and tube fed as before. Her weight was still a little bit stagnant but then we found the infection. The wound had a bit of stitch still left in it which caused an infection so she was on antibiotics for a couple of weeks. During this time, I decided to see what she would do if left to go without tube feeds. I found that she would wake if she was hungry and not wake if she wasn't. So I tried a dream feed (bless your cotton socks Tizzie Hall!). She was awesome at the dream feed! (My eldest would never rouse for one and my second would wake up fully.) This meant I could drop the middle of the night feed and stop the middle of the night express! Once she was off the antibiotics, she started putting on the weight just as any 5 month-old would be expected to do.
After weeks of 'nearly!', when she looked at me last weekend and tugged at the tube, I said "oh alright then." I undid the last tiny bits of tape that hadn't come up yet and let her take it out. I was pretty sure she wouldn't need it back in. The nurse came and said 'she's got the tube out!'. I said it came out over the weekend and I'd double check with the cardiologist and paed that week to see what they wanted to do. The cardiologist said 'the tube's out!', and I said, 'not officially...'.
'Not officially?', he replied.
'I'll see what the paed says tomorrow', I answered.
The paediatrician wasn't there! It was a locum who was happy with her weight gain and fine with the tube staying out. Yay!!! What's more no-one wants to see her for at least a month, which is much easier on our calendar.
This week she had the assessment from the health nurse. She assessed her for 4 month-old things. Apparently she's right up to date or ahead for things a normal 4 month-old would do, except gross motor skills. The nurse says that the heart condition and hospital/surgery business totally excuses any delay in development on that point and she's exactly where she'd be expected to be if she was a genetically usual child with a serious heart defect.
So she's kicking goals left, right and centre! (From well outside the 50m line....)
That's my girl!
Jacinta sleeping through her first footy match c/o Heartkids Victoria.