I arrived at the hospital at 9am ready for a feed. Alyssa’s BSL was 5.1 and nurse Angela had already started her tube feed so we stopped it while I changed a dirty nappy. We started up the tube feed (with Warren holding it) while I tried breastfeeding but Alyssa wouldn’t attach or attempt sucking. We left my breast free for her to access for a while if she wanted it but she just wasn’t interested at all.
Angela is an older nurse and very much ‘by the book’. I got told off a couple of times – once for leaving a dirty nappy by the bed, I wasnt allowed to unplug cords myself like I’d been doing, I left her isolet (enclosed bed) open for too long etc. It makes it really hard to relax and feel comfortable just being with Alyssa – makes me feel like I can’t be a parent to her.
I’m feeling really really stressed out about feeding today. I managed to express two full bottles again (about 400ml) which took about 40 minutes to do.
The weekend metabolic specialist, Dr. Joy Lee, came in with Himanchu (the Fellow we’d already met). She was fantastic about seeing breastfeeding as important and I’m starting to feel like the metabolic team are the only ones who care about supporting me breastfeeding but they’re not around very often.
Alyssa’s BSL at 12 noon was 5.6 which was good.
Warren is being great at talking to and touching Alyssa and having contact with her. I am struggling to maintain that contact – it’s still too upsetting that I can’t touch her like a normal baby without cords and needles and boxes trapping her – it all just feels so wrong. I want to pick her up and whisk her away but I can’t, so I just don’t touch her much at all and I feel bad about it.
The doctors are going to try and get a lactation consultant to come and talk to me to try and help with the feeding but I’m not feeling very confident that there’s much they can do to help. Alyssa feeds fine when she’s awake – but when we can’t get her alert and awake there’s almost no hope of success. You can’t make a baby drink if they don’t want to and why would she want to breastfeed from Mum and put in that energy when everything she needs is being pumped into her via her tubes. But I know I’d rather just sleep my way through this nightmare if I was Alyssa. It all seems so cruel to put a baby through.
12:00pm – Alyssa is having her drip removed from her right arm (the one she’s had in since we first got readmitted at the LGH) as she’s been stable and shouldn’t need it anymore. Even pulling off all the tape doesn’t make her cry very loudly at all. It will be nice to have a hand to hold again. We’ve taken Alyssa out of her isolet and put her into a regular baby’s cot.
Everyone is working hard to try and make me feel calm and positive – but I’m just feeling pretty empty to be honest.
Warren and I decided to take some time out and head into the city for lunch. It means missing a feed but I can do without the stress and pressure for a little while to be honest – I just need a break away from it all. While we were in Angus and Robertson I found a breastfeeding book which suggested putting breast milk onto a cloth to place under Alyssa’s head while she sleeps in the hospital and I can’t be with her. That way she can smell me and begin to associate my smell with getting hungry which might encourage her with breastfeeding. It’s a great idea and I’ll definitely try it.
At 3pm Alyssa had a tube feed and her BSL was 4.4.
Thinking about work in the future has been a little stressful but I’m trying not to worry about it too much. I can’t help but think of how our future has now changed – all the things we’d planned. I wonder just how different things are going to be for us now.
I walked past a book store and saw a book about bringing home a new baby. It dawned on me that it’s not really a book that would mean much to Liam as this isn’t a normal situation and I’ve had a sudden brainwave to try and write a children’s book to address the issue of what happens when your baby brother or sister doesn’t come home like a normal baby and has to spend lots of time in hospital – maybe with Mummy and Daddy being away too. Even if it’s not something I can get published it will be good for Liam to help him understand what’s going on with his baby sister. I worry that we spent so long trying to get Liam all excited about having a baby sister in our family and all she’s done is take his Mummy and Daddy away from the family. I hope he doesn’t feel bad towards Alyssa because of it – it’s not her fault but he doesn’t necessarily understand that.
4:30pm – Alyssa is sleeping peacefully and looking just gorgeous. If it wasn’t for the hospital room and all the cords and machines, she’d look like any other, normal, healthy baby.
6:00pm – A new nurse, Karen, is on duty and she says she has experience with lactation issues so she sits down to help me with Alyssa’s feed. She very forcefully manipulated my breast into Alyssa’s mouth, even though I said she is able to attach properly when awake, and tried to encourage her to start the sucking motion. She tried rubbing Alyssa’s cheek and chin, squirting milk into her mouth at the same time with a syringe, rubbing her face with a wet cloth. I’ve tried all of these techniques and more with no success so I felt a bit vindicated when Karen had no more success than I did. I’ve tried to tell them it just isn’t working and it’s almost like they don’t believe me – like they think I just don’t know what I’m doing. I just don’t think this is going to be an easy process.
I didn’t get upset with this feed though – probably just because they’ve now seen it isn’t something I’m doing wrong – she simply doesn’t have the energy to sustain a full feed. And I wasn’t very happy anyway because Karen had really sharp, squared fingernails and she scratched my breast a few times while she was grabbing and squeezing me – it wasn’t a very pleasant experience at all.
Warren and I went back to our room by 8pm to try and have a decent tea (if you call sandwiches decent) and raced back for the 9pm feed but Karen had already started without us even though she knew I was coming back. We stopped the tube and persevered yet again with a breastfeed but Alyssa barely had the energy to even open her mouth so I gave up after a few minutes and just cuddled her while she finished her tube feed. I went to express and this time 100mls took about 40 minutes which was frustrating.