Getting Things Started…

Warren and I got ourselves a good night’s sleep, ready to start with our rigid feeding schedule today. Alyssa had regular tube feeds with expressed breast milk (EBM) through the night with a naso-gastric tube- every three hours on the dot – with a blood sugar level (BSL) test just before each feed. They’ve started to lower her IV fluids (dextrose) to see how she copes and she seems to be doing alright. I tried to breastfeed Alyssa at 10am but she was just too tired and only had a few suck/swallows so we followed it up with a 60ml tube feed.

Daddy giving Alyssa a tube feed

The metabolic team came in to see us in the morning. They told us that something had shown up on her Guthrie Heel Prick test that every newborn has when they are a day or two old so they needed to do a urine test. They gave Alyssa some Riboflavin (Vitamin B) just in case.

Not so sure about this tubeWe came back to the hospital for her 1pm feed. Alyssa was still too tired to suck/swallow so the breastfeed was unsuccessful again. After trying for about 15 minutes we waited for half an hour and tried again but there was still no success in getting her to wake and feed so we resorted to another tube feed. The nurse, Rachel, had inserted the next sized naso-gastric tube to help her milk flow faster but it might have been too much because Alyssa threw up most of her milk. It was bright yellow because of the Riboflavin. We tried again but she just threw up some more.

Maureen came to visit and sat for a while to watch how Alyssa took her milk but even after some time she continued to throw up the majority of her milk (she’d had 60mls). We had changed Alyssa’s clothes twice because of all the throwing up with this bright yellow vitamin which makes a substantial mess. It’s very flourescent stuff and stains everything.

We tested Alyssa’s BSL soon after due to her not being able to keep her milk down and it had gone down to 3.8. Rachel called the doctors and they put her glucose drip back from 2ml to 11ml.

At 6pm I was ready to try feeding her again. Her BSL was back up to 4.9 but she was still very sleepy. Warren changed her nappy but it still didn’t wake her up. I had another attempt at breastfeeding her but she was still quite unresponsive. She can attach to the nipple properly but she doesn’t seem to know how, or doesn’t have the energy to maintain a good suck/swallow rhythm. I hadn’t had a chance to express any milk all day and with Alyssa not breastfeeding I was starting to get really engorged – dripping and leaking all over the place. Alyssa was just too tired to drink though so I gave up and went to express  and I managed to fill a 250ml bottle from each side (I usually didn’t fill up one bottle from both sides together). The unsuccessful breastfeeding is really starting to get me down – we just don’t seem to be making any progress.

Alison came back to visit and said that they weren’t too concerned about the BSLs being around 3-4 so they put the glucose drip back down to 2ml an hour. The results from the urine test came back clear so Alyssa won’t need the Riboflavin anymore so hopefully that will stop the throwing up.

Alyssa took her 6pm feed through the tube with only a little bit of posseting which was still yellow from the vitamins. We’d inserted a smaller tube again and the nurse showed Warren how to test it to make sure it was sitting in her stomach properly.

We did another BSL at 8pm and it was up to 5.4. I was waiting until 9pm to attempt another breastfeed but I was starting to feel incredibly anxious about it. I know it’s important to try though. Alyssa was sleeping peacefully with no sign whatsoever of being ready to feed in half an hour 😦

I was ready to feed at 9pm but bubby wasn’t interested at all – even after a nappy change. She wouldn’t even open her mouth to attach properly this time so we fed her via a tube again but this time we tried to encourage Alyssa to continue at the breast while the milk went through the tube – she just wasn’t interested though.

She was still posseting quite a bit after her tube feed but I kept getting told that while her glucose was down to 2mls and her BSLs are remaining between 4 and 8 then there’s absolutely nothing to worry about. After today though, there’s no way I can see we are even close to being able to survive at home like this – there’s no feeding success and still depending on the drip. I know I certainly can’t survive full time expressing to maintain a supply to go via her tube. It’s too draining on my time, but more importantly my emotions. I wanted nothing more than to breastfeed my little girl just as I did for so long with Liam, and it’s the one most important thing for her survival (more than normal anyway) and it’s the one thing that’s completely unsuccessful. And I seem to be the only one who is bothered by that!

~Donna

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