4 Months!

We’ve reached the point where I think most parents start counting their child’s age by months instead of weeks. It’s very hard to believe that we have come this far, after Ben was told Vivian wouldn’t make it on the night she was born.

On the infantile spasms front: No further seizures since the Thursday before last, thankfully! Our neurologist said to extend the prednisolone wean by an additional week, so Vivian has 6 more days of 1ml doses left.

On the overall baby front: We are still taking every day as it comes, and believe me, some feel like they go on forever! Most are going by entirely too fast for my liking. I am starting to feel as though there will never be enough time to do anything other than work, express milk, laundry, and long for sleep, in between soothing crying baby. We are still getting our fair bit of smiles and cuddles each day, which is what is keeping us sane! And Vivian is still progressing developmentally, which we are super thankful for.

Sleep. We all need more. Vivian actually was OK with the whole sleeping thing before we started the prednisolone. Now it’s very hard to get a 1-2 hour stretch at night. This is tied in with her crappy feeding still. We are lucky to get even 500ml into her each day now. She is averaging about 450ml a day this week. She’s lost 100g in the past week and I expect she will lose a bit more before she evens out again. She wasn’t a great eater before we started the steroids, so it feels like we are back where we started in terms of her feeding.

On top of the bad feeding and sleeping, Vivian has been horribly  constipated from the gaviscon she needs for her reflux. Her lessened intake means that where before she might have somewhat firmer bowel movements than your average breastfed baby, she has had really rock-hard ones that are super painful for her to pass.  She is now on lactulose daily to try to combat this.

I spoke with our old neonatal outreach nurse who is going to follow everything up with our pediatrician. Well actually, I tried to call and speak with our pediatrician last week, but she was on holiday until this week and then away until Wednesday doing work on the west coast. So I tried to ask the registrar on call, but was told I should go to our GP to get referred back to the pediatrician, unless it was an emergency…nice. And a complete waste of time. Hence why I spoke with our neonatal outreach nurse instead of the GP. I do like our GP, but I knew he would just refer us back to her pediatrician. We go in circles. I am tired of wasting time.

On the hearing front: we went to a hearing specialist today to get Vivian fitted for her first hearing aids.  It was as fun as we expected it to be. Babies don’t like things being put in their ears and they certainly won’t keep still while you’re doing it! We got there in the end, though. Because Vivian has moderate hearing loss, she will probably end up with the next size up front he smallest model hearing aid, because it is a bit more powerful than the smallest model and she most likely needs ones that strong. And, because her ear canals will (hopefully) grow pretty fast, we will most likely have to get her ear molds remade every month…crazy times. Not sure how fast her ear canals will actually grow- it doesn’t look like her head has grown much in the past two months. We will find out at her pediatrician appointment at the end of this month.

While we were at the appointment today we found out the hospital ENT department didn’t refer us on to a support service for children with hearing loss, provided by the Ministry of Education (like they were supposed to). I’m so glad that the Triton Hearing specialist noticed and put in for that referral for us, otherwise we never would have known about it. Do you see why  it’s so difficult for me to mention the hospital without complaining about something that should have happened? Again, I try to be patient. I am not a patient patient, though. And I’m definitely not a patient mother of a patient any longer. I am concentrating on the fact that at least we picked up on this early, so we can now build in the additional support or adapt our lifestyle to what Vivian’s hearing needs may be.

When we found out we were pregnant, we never thought we would need to have monthly hearing specialist appointments for our child. So many things are so different from what we pictured. I try not to think about it all at once because it can be overwhelming still. But we are still getting there.

On the me front: Counselling is going well, I think. I don’t cry every day anymore. Just some days.

Work is going well, too. The first week back was hard, I think because the last time I was there, I had all of these dreams of what Vivian’s future held, with no inkling of what was going to happen. Last week was easier. This week feels like I was never gone. I still struggle with being away from Vivian, if I stop and think about it, so I concentrate hard on not thinking about it. This is difficult though, because Ben gets to take pictures like this while I’m gone. That is my job!

Wonder

On the home front: Ben is doing an awesome job at being a stay at home dad. I struggle with being jealous of him getting to stay home, but am so happy that we don’t have to put Vivian into daycare. He’s even managed to have dinner ready when I get home a few nights (not that I would ever expect this on a daily basis)!  He still needs more sleep, though. Much more sleep.

We are still looking for a new place to rent. We looked at a place last week through our rental agent, but the owners of that property decided to rent to someone they worked with. We have a viewing this Thursday evening at a house that was up for rent last year when we found our current house. It’s not in the greatest neighborhood, but it IS within our budget. Fingers crossed we get it and that we can stand living there for a year, and that it’s warm for us in the winter.

We did get some good news from our rental agent about when we need to be out by. Instead of the first week of November, we now have until the third week to leave, so that’s a positive we are happy to take.

Here’s to hoping this week Vivian’s appetite comes back and we get her feeding and sleeping better. Even a three-hour stretch per night would be great!

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Starting Over

We are back to day one, after making it to 5 weeks and 2 days of no seizures. Vivian had some on Thursday morning.  It was a very sad morning for Ben and me. Heartbreaking.

We started weaning her off the prednisolone over the past few weeks. This week, she is down to 2ml a day.

Our neurologist is on holiday  until Monday. The other neurologist, who treated Vivian when she was very young, said to watch her over the next few days before upping the steroids back up to 4ml. We haven’t seen any more seizures since Thursday morning, but now we are back to watching her like hawks, evaluating every movement and cry. We will be calling our neurologist on Monday to see what he says as well. I don’t know what this means for her, or what it means for her treatment.

A lot has happened over the past two weeks, other than seizures.

I’ve gone back to work almost full time. I almost had a panic attack two days in, when our property manager called me and told me we had 6 weeks to find a new place to live. The owner of our house needs to move back in, because he can’t find a place to stay while EQC comes to fix his house…

The only other time I’ve sobbed like that is when we got Vivian’s MRI results. I really at that point didn’t feel like I could do anything. It was just another thing that was happening to us. And it sucks, it really does. It seems like one thing after another keeps happening and we can’t catch a break!

It is really hard to find a rental property in Christchurch at the moment for a similar price, with similar features (allows our 4 cats, stand alone, 2+ bedroom, space for a washer and dryer, not on a main road, dishwasher). We applied for one place but it was out of our budget and they weren’t willing to budge on the rent amount. It is not a renters’ market here due to lack of supply and huge demand, after the earthquakes. Part of me thinks it was stupid to ever come back to Christchurch now. Maybe we should have stayed on the Kapiti Coast.

If we don’t find something by the end of next week, I think we may look at options with shorter leases (there are a lot of rentals with short leases…so I’m baffled as to why our landlord couldn’t manage to find one for himself).

We got to take Vivian to an osteopath last week. It was really very interesting to watch. The osteo was very gentle and it was hard to tell she was doing anything to Vivian at all. When we left, she said Vivian may have a big sleep, a big feed, or a big bowel movement…she did all three the first night after the appointment, which was amazing (in the real sense of the word- she filled THREE diapers, and slept for first a 3-hour stretch and then a 6 hour stretch that night, and had a great feed after a week of crappy feeding). We have two more appointments set up. They are pretty costly, but seem to be worth it.

The osteo advised us to stop Vivian’s gaviscon…because she thought Vivian being on both gaviscon and omeprazole was overkill, and the gaviscon makes many babies constipated.  This isn’t the first time someone other than Vivian’s hospital pediatrician has told us they would treat her reflux differently. Our GP told us he would prefer we slowly wean her off of her omeprazole…but he had no issues with gaviscon. It’s so hard to know who to listen to! We did try her with no gaviscon for a day or two, but she was really miserable, so we are now back to at least two-four doses a day.

After the amazing night we had following that appointment, Vivian has gone back to being extremely unsettled and not eating or sleeping well again…one step forward, three steps back.  Today she didn’t even make it to 600ml. I am worried again about her losing weight now. When she was on the highest does of steroids she was taking closer to 1200ml a day.

We aren’t getting much sleep at the moment because she’s not getting much sleep at the moment. Ben is getting even less sleep than I am and I feel awful about it. It’s easy for people to say sleep when the baby sleeps, but when the baby doesn’t sleep, what the hell are you supposed to do then? I wish she would nap more for him while I am at work, so that he can get more sleep.

On top of that, she still has the oral thrush, which is really coating her tongue and probably her throat- Ben took her in to the hospital for her weekly neuro clinic appointment, and asked the doctor to change the anti-fungal medication she has been on for almost a month. She didn’t want to change it and told Ben to wait a few more days. I don’t think she really understood how badly the thrush could be impacting Vivian’s eating at the moment…and I was pretty upset about her medication not being changed. Apparently oral steroids (and steroid inhalers) can really allow thrush to gain a strong foothold in the mouth, so in most instances where steroids are being used, the drug that is commonly prescribed is flucanazole. I don’t understand why they didn’t prescribe that after Vivian showed no improvement three weeks into taking the first medication, Nilstatin. I called them this afternoon and finally got a prescription for flucanazole, so hopefully that works.

I’ll leave you with a video recorded last week of Vivian babbling to herself babbling…babyception of sorts :) She has gone quiet on us this week, and we’ve not had much babbling out of her. Hopefully she’ll start talking our heads off again when she’s feeling a bit better.

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