Monthly Archives: November 2008

Donna’s back home

Today started around 7am for me with a message from Donna – the nurses on the overnight shift must have been bored as they sent a letter via fax “from” Alyssa across to her in the early hours of the morning!

Anyway, I sprung Donna from the hospital about 10:30am this morning. Her folks and I rocked up to visit to find her showered, dressed and ready to be discharged, so we grabbed her gear and headed off to the LGH to visit Alyssa.

Donna gave her a feed, which I’m sure she appreciated since she doesn’t seem to like the bottles so much, and we spent some time with her before Donna decided it was too much for her to try and stay for the afternoon due to the pain from her op, so we tucked Alyssa in and came home to have lunch and so I could catch up on household stuff like washing and mowing the lawns while Donna rested.

My parents called into the hospital on their way home from Scamander – I lost track of time and came inside at 4:50 to find a message saying they’d meet me at the hospital at 4:30! Oops. I called dad’s mobile and found that not only were they there, but mum was giving Alyssa her bottle, so I jumped in the car and went back in to spend an hour or so with them and Alyssa, and to deliver another batch of milk.

I managed to get Alyssa settled and sleeping by 6pm, so we left her there – it’s strange but this is the first night that neither of us has been there to see her continuous feed to go on – it’s not that we don’t trust the nurses by now, but it’s a bit of a bed time routine for us to spend with Alyssa, but I’m sure she was just fine nonetheless.

Tomorrow, I’ll take Donna in to give Alyssa her second feed for the day around 11am, it’s a big ask to try and get there at 8am when Donna is still recovering and on pain killers – I’d prefer her not to drive when they might make her sleepy, so I guess that means I’ll be playing taxi for a few days. Hopefully by then Donna won’t be needing the meds and will be recovered enough to drive herself.

Donna’s surgery went OK…

but it looks like she is going to have to stay in hospital an extra night – it’s really knocked her for six.

She’s still got a lot of pain and the surgeon and anaesthetist think that perhaps it’s because of all the other stress we’ve had and that her body isn’t capable of healing as quickly as would be expected.

I saw Alyssa last night, after I first looked in on Donna (who was off her head on pain killers so not really the greatest company). The nurses told me that Alyssa had been a bit lonely after Donna left, and that every time someone went into her room, she’d look around trying to find one of us and get upset when she was left alone again – way to break my heart Alyssa…

Eventually, they moved her out to the nurses desk (just outside her room) to keep her company, which was better. I gave her a bottle of EBM for her 7pm feed, she was supposed to have a minimum of 75mls according to the dietitian, but she drank nearly 100ml! Seems she may have been drinking more than we thought. Unfortunately, because Donna was so out of it, we didn’t get enough milk for her to make it through the night, so she would have had some soy formula in her overnight feed – Donna is expressing up at the hospital (for those who aren’t aware, they’re in different places, Donna is in the private hospital, St Vincents), so I will go and collect some milk shortly and take it around to the LGH for Alyssa so we can get her off the formula.

After I saw Alyssa and put her to bed for the night with her continuous feed, I went back around to see Donna for another hour or so. She was far more lucid, but still groggy and kept asking me the same questions. I’ve had some SMSes from her this morning though, and she at least sounds mentally with it, even though she is in some pain.

Just some photos for today

Donna took these just before she went in for her own surgery.

Alyssa's room

Alyssa

Two more weeks …

Yesterday Alyssa’s cannula was playing up, getting occluded frequently, but it seemed to be flushing ok. Well this morning it packed it in – it was only put in on Tuesday with the hope it would last until Friday at least. Then the doctors thought she might need one more until Monday when they thought we’d be heading home with our little girl and some oral antibiotics.

OMG, Halp!

This morning her doctor checked out the xrays that were done on admission (she hadn’t seen them earlier) and realised the infection had been a lot nastier than normal and she was concerned about taking her off her antibiotics too soon. So she contacted the infection specialists in Melbourne to seek their opinion before deciding whether or not to put a short term or long term cannula in. They took her away for another 90 minutes or so this morning and after a couple of attempts in her other leg they couldn’t get one in so they decided to leave it for a while and get a response from the specialists.

The verdict was two weeks minimum – another one of those shocks to my system hearing the news we weren’t going home anytime soon – which poses some problems with cannulas. Alyssa’s veins have either been used on previous IVs or they’re just too small to use or too hard to reach and they are really struggling to find new IV sites. But she needs one in somehow so they had another try this afternoon (another 90 or so minutes). They gave her a muscle relaxant which made her very sleepy, but they managed to find a suitable vein in her left arm again and they’ve noticed another potential vein next to it but they weren’t able to get a long line into her. Hopefully, with some super strapping and bandaging this cannula will last longer than two days. If these two sites collapse the only options left will likely be putting an IV into her neck or even into her head which will mean shaving her hair a little bit.

If none of these options work, or if they all work but all wear out before she’s finished her antis, the last option is surgery to insert a semi-permanent line. They have promised to do everything they can before resorting to this but it could be our only option if the lines keep collapsing. If this is needed we’ll most likely need to go down to Hobart for the operation.

As you can imagine, this was one of those difficult days – quite a few tears shed on my part. A combination of all the fuss of getting IVs into her (even though they’ve had her for 90 minutes they’ve only been poking her with needles for a couple of those minutes, but it’s still a lot of fussing for her) and the news we’re stuck in hospital, unable to come home, for another two weeks at least just made for a really difficult day. I was only just starting to allow myself to think we might actually be allowed home next week. But all in all, the very best thing to do is have her completely healed and healthy so we can go home and relax properly and hopefully enjoy christmas together as a family. If we are able to be home for christmas it will be the most special celebration for our families but I’m trying not to think too much of it just in case we aren’t able to be at home.

Thankfully, our very special friends Bob and Heather, with their adorable children, Pelham (same age as Liam) and Bridget (about 7-8 months) drove up from Burnie to meet Alyssa and spend some time with us. It was perfect timing as I got their warm hugs just after hearing we were staying in hospital longer. It was just so wonderful to see them – it had been a while – and I miss them already. As Alyssa wasn’t hooked up to a drip we were able to walk around with her and we all went and sat in the hospital playroom to chat, cuddle with Alyssa, and Pelham and Liam were able to play around together happily. It’s nice to escape our little hospital bedroom every now and then, without machines attached.

So with the drama of today, and the pleasure of Bob and Heather’s company, I haven’t had much time at all to think about my operation tomorrow. I keep waiting for the nerves to set in (this is my first surgery) but all I keep thinking about is hoping that Alyssa will be ok with her feeding without me for over 24 hours and will she have enough milk to get through. But I’m sure she’ll be fine – and I’m sure I will as well. At least one drama should be over and done with by the end of tomorrow and it will be nice not to worry about that horrid pain returning. I will miss my little girl though – I’m just looking at it as an opportunity to get a really good night’s sleep.

Think they've wrapped it well enough?

~ Donna

Cannula Issues and Mummy’s Surgery Plans

Warren yesterday wrote that Alyssa’s long line cannula had packed it in overnight and they weren’t sure they could get another one in – she’s running out of suitable veins the poor little thing. At about 3pm the doctors took Alyssa for a wander to the treatment room to attempt to insert another long line. She was due for her next breastfeed at 3:30 and they told me she’d be back in time for a comfort feed so I sat around waiting for them to finish (with Natalie’s wonderful company) but things were a little anxious when there’d still been no sign of her at 4:30. Warren had arrived at the hospital ready to take me to my surgeon’s appointment at 5pm and I wasn’t going to have time to feed her. I was starting to worry about her blood sugar levels crashing (not sure why when she was in the care of very capable doctors but that’s the Mum in me I guess) so I had one of the nurses go and do a BSL for me and prepared them to do a bolus feed (down her tube) when she was out. Her BSL was almost 6 which surprised us until the nurse reminded us she’d been sucking on sucrose for pain relief which had been boosting her levels, so she was more than fine – just probably a little hungry. But they fed her in my absence and we came back for a goodnight breastfeed after my appointment.

I was glad for Natalie’s company in the afternoon though – kept my mind focused on other things instead of my little girl being poked with yet another needle. I got upset in Emergency the other night when it took two attempts to get a cannula in me – darling Alyssa has had half a dozen now. Natalie and I hadn’t really seen each other since uni days where we trained to be teachers together so it was great to catch up and hear all about her little boy Benjamin, who is only a couple of months older than Liam. She also made me some yummy biscuits too which was very much appreciated.

Alyssa with Monique and StephanieEarlier in the day we’d also had a visit from another teacher friend, Monique and her daughter Stephanie who is a couple of months older than Liam as well. Because Alyssa’s drip had been disconnected, we were free to move around beyond the confines of our little room so I spent the morning on the couch with Monique in the kid’s playroom. It was just so nice to take her out of that room and relax with her – even better with such wonderful company. Stephanie thought Alyssa was pretty special and gave her some cuddles and kisses which was just adorable.

Alyssa's canvas

Alyssa has been very spoilt by Monique and her amazing artistic talents. Monique has some gorgeous designs that she puts on cards and canvases and she made Alyssa a birth canvas which just blew me away – it’s absolutely gorgeous. I only wish I was half as talented. She makes a great teacher too but I swear she should give up and focus on these creations to make her millions. I’d be one of her most faithful customers. The canvas now decorates Alyssa’ ‘hospital bedroom’ and I can’t wait to take it home with Alyssa and put it up in her real bedroom.

Last night the doctors eventually gave up on securing a long line and just inserted a little cannula in her right leg. They’re hoping it will last until the end of the week and she will probably need another one in her other leg over the weekend. The orthopedic surgeons visited again this morning and are really pleased to see Alyssa is moving her right arm around quite naturally and comfortably. They’re happy for her to go home once she’s finished her course of antibiotics. The doctors have said that they’ll keep her on the iv until Monday and they’ll do a blood test to see if everything has returned to normal (apparently yesterday’s blood test has shown a significant drop in whatever it is they are looking for and she’s only just above the normal range which is good news). Then they’ll be able to send her home with some oral antibiotics (yay for naso-gastric tubes) to make sure they definitely kill off the infection. So we’re stuck here for a few more days but the end is near.

The surgeon I saw yesterday was keen to get me in to surgery as quickly as possible (yay for private health cover) so I’ve been booked in to have my gall bladder out this coming Friday. It is a keyhole surgery procedure so as long as everything goes ok, I should only be away from Alyssa for one night and the nurses will just be able to bottlefeed her EBM in my absence. I just have to express milk every chance I get between no and then to ensure I have enough milk left for her – otherwise we have Soy formula ready and waiting. I’m definitely nervous about the op – it’s my first operation ever – but I’ll suck it up and take my cues from my brave little girl, currently sleeping peacefully in my arms while I type all of this out one handed, and be able to tell her when she’s older that I went through surgery not long after her so I can understand what she’s been through – well a little bit anyway. She’s definitely a hero in my eyes – what a little survivor! I’d say I look up to her but she’s still too short for that 🙂

Evening Update:

One of the doctors seems concerned that perhaps Alyssa isn’t weighing enough – we were told by the metabolic team that she would always be in the lowest percentile for her age – and they want to up her feeds at night from 25mls an hour to 28mls. I know it doesn’t seem like much but when it was suggested the other day I said I’d like them to contact our specialists before making any changes and they didn’t so I told them to leave it at 25mls, which they did. So yet again I told them to discuss the changes with Melbourne and they wouldn’t so I’ll be calling Maureen myself tomorrow to let her know.

We have no problems with doctors making changes to help her but all we ask is that they collaborate with Alyssa’s dietitian because that’s who we’ll be dealing with for her feeding schedule from here on and they need to know of any changes. I really don’t know why they seem to get so uncomfortable about us suggesting they seek advice from specialists – it seems to petty. I was pretty pleased with her weight gain anyway because she didn’t put any weight on when we were in Melbourne and has put on almost half a kilo since we’ve been back (in about two weeks) which I thought was pretty good. Apparently it’s not good enough!

I planned to express lots today to try and get extra milk for when I go for surgery on Friday but Alyssa decided she wanted to feed every 90 minutes or so and I simply had nothing left to express. I reckon she is going through a growth spurt so I’ll be interested to see what Maureen says when I call her tomorrow.

Alyssa’s long line cannula has tissued

Unfortunately, Donna arrived at the hospital today to discover that the long line that was placed in Alyssa’s arm has “tissued” overnight. This means that the IV fluids are leaking out of the vein and into the surrounding tissue. Part of the reason they decided to insert a long line was to try and prevent the need to replace the cannula regularly, the hope was the line would last the full course of antibiotics.

Because Alyssa is so little and already had multiple cannulations in the past month, they cannot find another vein suitable for a long line, and they are fast running out of sites that will sustain a cannula long enough for her to have her IV antibiotics.

Monday

After a busy weekend with lots of visitors, today was a quiet day in the hospital for Alyssa and me. I arrived just before 8am as I do each day ready to feed her, to find she’d been stripped down to her nappy again (it’s becoming a habit over the past few days) because she’s had another nappy explosion overnight and made a mess everywhere – all over her beautiful knitted dress that Grandmama gave her. So I did her heel prick test and settled down to feed her. I’m starting to get really anxious everytime I need to heel prick Alyssa now and I think it’s because I’ve done almost all of them since she came in to hospital. I know it needs to be done but she gets so upset as soon as you take her sock off, the poor thing. It upsets me that I spend the night away from her and the first thing I do when I see her each morning is stab her foot – at least I get to follow up with a nice breastfeed and cuddles.

We gave her another bath (her second in only three days which is our best record so far) but she didn’t enjoy it as much today. I think the water was a bit colder but she was able to move her right arm around quite a bit again which is good to see. The orthopedic surgeons are pleased with how she has healed and have said they’d leave it up to her general doctors as to how long she will need to continue the antibiotics for but it’s looking like another week at least.

Marion, one of the NICU nurses who cared for Alyssa, came to deliver a new pump to our room and see how she was doing and she commented on her hand still being swollen which surprised me. I had a look and didn’t think it looked swollen until I realised she was looking, not at her arm that was operated on but the one with the iv drip. I noticed too that it was indeed quite swollen and puffy and we were a bit worried that her long line drip had started to tissue and would need to be removed. I had one of her nurses check it and they got the doctor, Rebecca, to have a look. Rebecca halted her antibiotics while she waited for a second opinion but she didn’t want to use the IV until she was sure it was safe and she didn’t want to take it out until she was sure it was useless. She tested it and it appeared to be working fine but her arm was definitely swollen. We knocked the drip right down to 1ml an hour (down from 5mls an hour) – the saline is only running through it to keep the drip open to use for her antibiotics so doesn’t need to be pumped through fast – and the antibiotics right down to 5mls an hour and left her arm unsplinted and unbandaged to keep an eye on it. The puffiness had gone down by mid afternoon so they were confident it would be ok to continue using it so we were really pleased she wouldn’t need to be re-cannulated. Hopefully it will hold up for one more week – we shall see.

I went for a wander around to the maternity ward after lunch to visit Jo and baby Georgia. She is a gorgeous little girl with a head full of dark hair, even more than Alyssa. I felt a little bit of sadness that my baby has to be attached to a drip and it’s not as free and easy to pick her up and cuddle her but mostly I was just so pleased that Georgia’s okay and won’t have to go through the same things Alyssa has done. It really made me wish I could pick up my baby girl and just take her home with me. I hope the next week goes by really quickly.

Tonight I’ve typed up some more of our time from when we were in Melbourne (October 31st and November 1st) if anyone wants to go back and read what was happening. I’m hoping to finish typing it all up in the next day or two but I’ll let you know when I’ve finished new additions to the blog. We’ll try and add some photos from that time as well. The next challenge will be trying to write down what happened when Alyssa first got sick and our time in the NICU at the Launceston General Hospital, as that all happened before I started the journal, but it’s a very important part of the story.