Weight Woes & Ear Checks

It’s been a month since I last posted updates – oops!

Good news first: Vivian is still seizure free and we are a month into weaning Vivian off of her anticonvulsant medication (a quiet woo hoo!).

Bad news: It’s been this long between posts because we had a setback with Vivian’s weight and it has been hard for me to come to grips with it, and because Vivian’s birthday kept us really busy (will update about that soon, I promise).

The day after my last post, we had Vivian’s next pediatrician appointment at the hospital, where she was weighed for the first time in three months.

We were pretty shocked when the scales read 7.65kg, meaning Vivian had only gained about 320g in three months. It was super disheartening when the pediatrician pointed out that this put her at the first percentile on the hospital growth chart (based on forumla-fed infants). She did grow 8cm over those three months, though, so her growth hasn’t been stunted at all.

Ben and I left that appointment full of gusto about getting Vivian onto three meals of solids a day, and me vowing to research everything I could about getting more calories into these limited (smoothest of smooth) solids.

The pediatrician also put in a referral to get a dietitian working with us. I will admit that it was really hard going home and realizing that yet another thing with Vivian is not going to be easy. Really hard. But she’s still smiling, and laughing, and being as active as ever, so she’s definitely not failing to thrive. On the bad days, she makes us really work for those smiles and laughs, but it’s still worth it.

I was also pretty confused because the New Zealand Well Child books use a different growth chart than New Zealand hospitals use. The well child chart is based on breast-fed infants and is the one used by the World Health Organization. On that chart, Vivian’s weight put her at the tenth percentile, not the first.

Vivian was weighed again last Monday and now weighs 8kg (I think this puts her at the 25th percentile on the WHO chart) after a lot of hard work by Ben and Vivian. Ben has been working on upping the volume of solids at every meal, along with adding things like cream and butter to Vivian’s solids, which she doesn’t seem to mind. We’ve also discovered Vivian takes after me and shares my love of peanut butter. Her only accepted savory flavor to date. We’ve got a long road a head of us on food! Hopefully we will get there one day.

The dietitian finally made contact and saw us last week and didn’t really tell us anything we hadn’t read already while researching a higher calorie diet for Vivian. She did, however, point out that breast milk wasn’t providing Vivian with an adequate amount of iron past the first 6 months. When I mentioned that this information was somewhat outdated, and that the iron in breast milk is more readily absorbed than iron found in other foods, she didn’t look particularly pleased with me and so I spent the rest of the meeting on edge, and was pretty disappointed with the information she provided.

At the moment we are still continuing with donor milk, as we haven’t run out yet. She did mention a supplement we could add to Vivian’s breast milk that will boost the fat and calorie content and dropped off a sample for us, which is a good avenue to look at, but a large amount of powder will need to be added to the bottles and we’re not sure Vivian would readily accept the flavor. Something for us to trial, I guess.

Slight rant: Today we were back at the hospital for an ENT appointment that was completely superfluous and a waste of time. We were there for all of 90 seconds once we were called back from the waiting room. They only wanted to check Vivian’s ears to make sure there was no fluid build up or sign of infection, even though we already see the hearing specialists at least once a month (usually twice a month)!

While I do appreciate that they have Vivian’s best interests at heart and that they’re being vigilant with her hearing health, we could have told them her ears are clear because they were just looked at 10 days ago.

I leave you with what Vivian thought of the waiting room:

What Vivian thinks of having to wait for her appointment #hopeforvivian

A post shared by Gwen (@gwenami) on

And will try to update with how Vivian is getting on in physiotherapy and her birthday soon!

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The days are blurring together

Well, we’ve made it past the 2-week mark of no seizures! 16 days today. It’s really fantastic. I again don’t want to jinx anything, so don’t want to dwell on it!

The days are blurring together and we are so exhausted. Emotionally I am all over the place. Vivian is doing well, but she is definitely not the happy, smiling baby she was before we started the steroids. It’s been days since we’ve gotten a smile out of her and she is just so hungry *all* the time. Like hulk hungry. Hangry even. I’m surprised she hasn’t turned green and split her onesies yet. She’s cat napping instead of getting good naps in and on top of that, has stopped sleeping through the night in two good chunks. Any time she wakes, she is hangry, no matter if she’s been asleep 3 minutes or 30 minutes. It’s like she has no off switch on her stomach.

This means she is guzzling through the donor breast milk we had stashed and I have spent most of the past week stressing about being able to meet her feeding needs. One of our donors is going back to work this month and the other two screened donors who helped while Vivian was in hospital have had things come up which mean they can no longer donate currently either.

We got very lucky and found a Mom up in New Plymouth with a decent frozen stash, along with a super lovely mother out in Leeston who read Vivian’s story and wanted to help, so we are good for milk for the next little while! I am hoping this is enough time for me to source a few new donors so we are not so reliant on one person’s supply. I so wish I could produce more milk for Vivian. It is the most awkward and humbling experience to ask someone else to share their baby’s food with Vivian. I am forever thankful to the ladies who have helped us thus far in making sure Vivian has breast milk and would love to continue using breast milk as long as we possibly can.

On top of Ben and I being sick last week, Vivian did end up catching whatever virus it was, and we ended up taking her into the hospital last Thursday to get checked out. Normally I probably wouldn’t have taken her in, but her doctor advised us to bring her in if she gets sick while on the course of steroids. She did get the all clear, but she developed a pretty chesty little cough and has since lost her voice (something Ben isn’t particularly upset over). She also has a case of thrush in her mouth and on her bum, so we have to treat her for that. Apparently steroids can mess with babies’ systems in that way as well, and thrush/yeast infections are quite common while on steroids.

On Saturday, we caught up with some friends who helped change the oil on our car and ate yummy donuts. It was neat getting out of the house with Ben, and not to a doctor’s appointment. Vivian was pretty good during that visit and even took a nap on me! :)

Sunday, a lovely lady came to see us and dropped off some breastfeeding supplements we ordered from the US. Although we’ve only known her a short while, she is really awesome to talk to and is a great source of positivity and encouragement about all things breastfeeding-related. She also referred us to Bellyful, and we are waiting to see if we can be accepted twice, as they already helped us out with some tasty meals back in July.

Monday, we met the team at Champion Centre; we start weekly appointments there next Monday. The specialists seem really wonderful and I hope that Vivian thrives with their help.  I am still very disappointed with how long the referral process took with this, because I’m now due back to work on the 22nd of this month. I get to go to ONE appointment there with Vivian. We have been home for almost 10 weeks now. I know the important thing is that she is going at all, but I wonder how much easier our journey could have been thus far if we had gotten the support we needed from the get go with this, especially when we were struggling so, so hard with Vivian’s feeding.

Tuesday, Vivian and I had lunch with a couple local Moms with whom I started my pregnancy journey. They have been a strong source of support for Ben and I and so much fun to get to know online. It was awesome meeting them in person and talking with them and seeing how lively their little ones are. At the same time, it was hard to see how much their babies are doing and where Vivian is in comparison. It’s not like I actively want to compare her to them. It’s just very hard to ignore when it’s right in front of me. I got a bit unexpectedly teary while I was there and felt pretty embarrassed about it. Hoping that outings and catch-ups will get easier, but I think it will take me a long time to see other babies and not feel slightly sad/disappointed/envious/etc. I think any new mom of a special needs child would feel the same way for a bit, at least in the beginning.

Yesterday, Vivian had an audiology appointment for more hearing tests and at the same time I had my follow-up with the OB who performed my cesarean section. The hearing test didn’t go so well this time because Vivian didn’t want to sleep while we were there and we were only able to get testing done on one of her ears in the last 15 minutes of the 2.25-hour appointment. Directly after that appointment, we were due at a neurology follow-up where Vivian’s blood pressure and urine were tested. Blood pressure was in the high-end of normal, urine was clear, and we were told that Vivian’s EEG showed no abnormal/epileptic activity. If we continue to see no seizures, we may be able to start weaning Vivian off the steroids at 4 weeks instead of 6 weeks, which is awesome news.

Because there was no abnormal activity on the EEG, the registrar said that if Vivian’s seizures were controlled by the steroids, they would not be doing another EEG. I’m not sure if this is normal for IS treatment or not. We have another weekly neuro appointment next Wednesday, so I will be asking for more information about the EEG results then, because although there was no seizure activity, I’d still like to know what else it showed. Hopefully we will actually see the neurologist this time, instead of his registrar. She was really nice and did answer all of the questions we had at the time, though.

Today we have a Te Puawaitanga nurse appointment for a well child check. Thank god this one is at home; we all just need a day at home after a busy day like today. Vivian was so over tired by the time we got home. Not a happy camper! But trips out are getting easier. Maybe it’s an age thing? She does still seem to be easier to settle now than she was a month ago, thank goodness.

So, lots of good points over the past week to be thankful for.

I just want to sleep. For a very long time. I know this will never be possible, ever! I try not to mourn the days of being able to just nap as long as I wanted! At least I know THAT is at least a normal part of parenthood.

Tummy Time

 

New life, in more ways than one

Forgive me bloggers, for I have disappeared. It has been over a year since my last post.

And so much in my life has changed. The past year has been an absolute whirlwind of change, and I welcomed it with open arms.

My job in Wellington ended in May last year. Thanks to a wonderful woman I used to work for, I was blessed to begin two part-time jobs in Christchurch, to make up one full-time job. For the first three months after my job ended, I lived in Christchurch and Ben stayed in Wellington with our lovely kitties until our lease there ended.

Ben and the kitties joined me in July, when we were lucky to find a reasonably priced rental in Christchurch among horrible rising rent prices. So many houses were damaged or demolished due to the earthquakes, which has resulted in a shortage of affordable housing here. It’s not a spacious house, by any means; it’s about half the size of our home on the Kapiti Coast, and only $30 cheaper per week, but it’s a good little house.

Ben found a new job as well and life for us resumed the familiarity that we once knew; we were home again.

While we were up north, I was on my way to being diagnosed with polycystic ovarian syndrome. I had started that journey before we left Christchurch in 2012, but it took forever to find a doctor’s office that was accepting new patients on the Kapiti Coast/in Wellington. I picked it up again when I returned to Christchurch. My very first blood tests pointed to the possibility of me actually being pregnant, which hadn’t happened on its own even though we hadn’t been preventing pregnancy for over two years. Ben and I really thought it wasn’t possible for us to conceive naturally at that point, but alas, we finally did it!

We built dreams and hopes for the new life I was busy growing. We planned and prepared. We were so ready. We had been waiting for this for so long.

In June 2014, our family grew by two tiny feet when our daughter was born. Her birth story and journey thus far will come in another post, one that I desperately need to write for myself.

For now, I am amazed at how quickly days blur into nights and back to days again. And at how well I am surviving on naps (reminding me of my days as a breakfast chef). And how astonishing it is that I can love someone so fiercely that I’ve only known for two months. And how lucky I am to have such a devoted husband, who is becoming the most wonderful father to Vivian.

Vivian

What’s new in your world?

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