The tale end – or our beginning

Thursday, 11 July 2013

Cardio update

Avery did extremely well with cardio today, her blood pressure was as low as it has been the last few appointments.

So.... she is off the medication! Well at least for one month. Then they will check it again, but tomorrow will be the first day since she came home from the NICU that we don't have to give her blood pressure medications or meds of any kind. Its crazy!

I did good today!

I'm excited, yet at the same time slightly nervous. I know she is responding well to the meds, and I know that she is expected to be fully off the meds before she is two. So this has always been the goal, its just another adjustment to being normal kids.

Cardio

No not exercise.

My sweet baby

Avery has been going in every two weeks to cardiology working on first switching her blood pressure medication and then after that trying to wean her off of it, all the while talking to her nephrologist in Nova Scotia.

She started off and has been on Captopril since before she left the NICU. Before switching the medication she was up to 7ml 3x a day. It had to be refrigerated, and was only good for a month from being mixed. Our fridge looked like a pharmacy with two big glass bottles. She was switched over to a once a day version called Lisinopril and again 7ml. That was back in ... May??? wow.

calm cuddles with mama

The cardiologist gave her a month switched to the new medication, sent her for blood work which she laughed at and kept asking "what is that?" as each drop of blood was milked from her finger into the vile. Then she went back in, her blood pressure was lower then I had seen it since it first spiked in the NICU, her labs came back great so they lowered her to 5mls once a day of Lisimopril and to come back two weeks later.

my new mellow Avery

Fast forward, her blood pressures are as low again, so they decide to lower her down to 2.5mls of Lisimopril!

Now she is back again tomorrow. Two weeks since the last lowering, now I'm wondering what the result is going to be.

LOVE my glowworm!

Back when she was on Captopril, you could tell she was getting ready for her next dose up to an hour or two before it was due. She would get angry. Clingy, screamy, and punchy.

mid tantrum

all this because Gwen was laughing

it was the end of the world

Since she was changed over, I haven't experienced that except on the one day we left before her dose was due and didn't get home until 2 hours after it was due (bad mommy forgot to double check with daddy that day and I felt horrible!)

I think that Lisinopril was what she needed. I think that it is controlling her blood pressure well, and hopefully she has as low of a result again. Will they lower her further? I don't know. I guess tomorrow will show what is happening.

Tuesday, 9 July 2013

18 month appointment & sadness

The girls had their 18 month needles today, and having to talk about all the doctors and health issues is I have to admit depressing.

They have come so far, but having to relive everything that has happened in the last 6-12 months...

June 2012

We are getting close to Gwen's 1 year diagnoses for ANSD. The more I think about AN, the sadder I get recently. I just wish I knew she was going to do well with her HA. Just wish she would develop language well enough, and hear well enough to be the best she can be.

Gwen - July 2013

I also worry about Avery's paralyzed vocal cord, and people not understanding them. The girls are still random stopped, and they get looks. Avery always gets looks when she gets excited in talking.

Avery - July 2013

I don't want people looking at them, signaling them out. I know it already happens with the fact that they are twins. But I wish that they wouldn't look because of Gwen's HA, or the looks when Avery talks.

They are fine.

Avery - July 2013

They are both dealing with disabilities.

Gwen - July 2013

But I refuse to treat them as disabled.

Avery - July 2013

But I can still be sad.

I will still have days that I blame myself.

I know it isn't logical, and I know that I didn't do this to them. I know that the alternative to it all is worse.

If Avery didn't have her PDA surgery when she did, she would have bleed out into her lungs and died. Simple as that. We couldn't have waited for her to be bigger, to wait for the space to be bigger, and for it to be less likely for the nerve to be damaged.

Avery - Jan 2012

If Gwen wasn't put on a ventilator, she would have died too. We almost lost her several times, too many times to count and we would have if she wasn't ventilated. It damaged her hearing. Her early delivery, low birth weight, jaundice, antibiotic use all damaged her auditory nerve and were all because of being born early.

Gwen - Jan 2012

These are the realities of the girls. I have to deal with this, somehow. And I will.

It's just taking sometime.

Monday, 8 July 2013

family

It was our nephews baptism this weekend. We had to drive 1.5 hours to the Church that my sister-in-law was christened in, and by the same priest that married Matthew & I (well, one of three), My brother and sister-in-law (the same one) and baptized all my kids.

Rhys' baptism

Gwen & Avery's baptism

Declan's baptism

Its kinda interesting that he has been so present in our lives, given that I'm not overly religious.

Friday, 5 July 2013

Just too hot

Miss G informed me today was too hot.

no hearing aids mom too hot

Too hot for hearing aids

its too hot

Too hot to do anything

let me take my clothes off too mom

Just too hot

sooooo hot mom

She spent most of the day screaming at me, throwing a fit (that is why you can see her stork bite so well) Both girls went to bed in a tank top onsie and a fan on for the first time. An hour before bed it was 29C (about 85F) in their bedroom, I put the fan on, and they haven't made a peep within the first 5 mins of going down.

Wednesday, 3 July 2013

Earrings & Ear Piercings

So I have been debating getting the girls ears pierced since I found out I was pregnant with girls. Both my mom and MIL have voiced concerns about getting them done to young. Telling me horror stories about babies with bad infections in their ears/neck.

Yes my MIL was a nurse, and saw all those kids who this happened to. So its understandable that she is concerned, my mom also heard from other parents about this happening. That is why I didn't get my ears pierced until I was 5.

5 year old me, don't judge it was the 80's

I know I want to get their ears pierced.

I know that there are pros and cons to getting it done young.

But I also now have the added unknown with Gwen's HA. Every time I search online if she can get her ears pierced I get conflicting responses. I would just want to know if its possible, and if it is if she can't wear her HAs while they are healing. Both of those will effect when we will get them done. I don't think it would be an issue her receiver doesn't go near her lobe, but I'm still curious.

Miss G making the ear piercing decision hard

Matthew is for getting them pierced, but thinks they need to be 2 or 3 before we do. I'm fine with that. He gets as much say as me. I'm also fine with waiting until they are 5 like I was. It might be a nice thing to do on their 5th birthday, I still remember getting mine done then. But then again, was it on my birthday??? With being born in December, I doubt that my parents would subject themselves to trying to keep earrings in during the winter.

The other thing is, could/should I get Avery's ears pierced at a different time then Gwen? I know that if for some reason Gwen can't get her ears pierced then I can't say no to Avery. But if for some reason we just need to wait for a certain age for Gwen to get the done to help her better, should I wait for that age for Avery too? Or would it just be easier to do the ear care separate?