broken record and some possible interesting news

I know I know, I'm busy.

Matthew had a week off so we fled to the southern shore to stay at his nanny's house after the girls cardio appointment.

So first the cardio appointment. It went really well, Gwen's pressures were fine so she got discharged.

Avery's blood pressure is perfect again so... she is off of meds officially and discharged from cardio too!!!!!

look how serene I am now that I have low/normal blood pressure 

Now she has a follow-up with Nephrology in September and her Nephrologist has the last say over her blood presser but it makes me hopeful. 

After their late (holy molly 3pm appointment that didn't start until 3:30pm) we headed off to Matthew's nanny's house. Rhys and the mother-in-law headed up with Matthew's aunt & nanny. While Matthew, the girls and I headed up in our rig. We got there after 7 so we tried to get set up to get the girls to bed. 

All three loved spending most of their time outside, Matthew loved spending time with the kids where he has some of his most favorite childhood memories. 

Matthew took these playing with the kids 

Rhys up a tree that Matthew climbed many times 

the girls playing hid and seek 

Avery enjoying the yard 

Gwen running around 

I loved spending more time with Matthew's family. Most of his aunts showed up for short visits during our time there due to the community one over having their come home year that week. It was also during Lady Day and they are from a good Irish Roman Catholic community with its own grotto so a big influx of visitors during our stay. 

grotto

Rhys running around before the service 

the girls waiting for it to start

Because of how devout some of Matthew's relatives are there were week long candles lit for the girls for at least as long as they were in the hospital (I know they were longer then that, but I can't remember how long) and so a bunch of the people there stopped me telling me that they prayed for the girls and how happy they were to see them now. 

Loved spending time with the family, and getting out of the city. 

So now we have a break until sometime mid September before there is another doctors appointment, and I'm glad for the break. 

Rhys starts up school in only a few weeks, were did the time go??? Still waiting to hear about what session he is in be it mornings or afternoons. But regardless he is all ready, all the school supplies are bought and ready to go! 

Also, I wanted to let you guys know that I might be doing a guest blog for someone that I have been following for a few years during her TTC journey. I will let you know more when I hear it but it is exciting to think about. I will keep you posted! 

Vacations, Walking, Appointments, Regatta oh my!

Life has been busy.

What, really, you ask? Life is busy with three kids?

I feel like this is how I'm starting lots of blog posts recently.

Since I last posted the girls had their 18/19 month assessment at the PPP on July 25th.  And they got assessed at 18/19 so we don't have to go back until they are 3 year olds!!!! You won't believe how excited I was to finally get the "they are behaving like their actual age, not their adjusted age"

After the appointment we went on a mini vacation with my parents and in-laws. The kids loved it and so did we! On the second day Gwen decided that all she needed to walk was an empty 4L bottle of water in her hand and all the family to see her. Since then she hasn't stopped!

While on vacation Matthew and I marked our 10 year dating anniversary on the 27th. We didn't do too much because we were running around enjoying our vacation so yesterday we went to lunch with the girls to acknowledge it.

three little monkeys on the top bunk 

Also during the vacation we were able to spend some alone with Rhys and drive to the Aviation museum and swing by the silent witness memorial. Rhys loved the special attention and being the big boy doing big boy things, but he also insisted that we buy somethings for the girls while we were there.

Captain calling 

flight simulator 

Look how big the gun is dad!

Looking at the different planes and "all the mechanical pieces"

plane going though the museum 

silent witness

Daddy and Rhys taking in the memorial 

We also went to the touch tank in Terra Nova Park. Avery tried to climb into it she loved it that much

Avery is excited!

Trying to get into the tank!!!!

Touching it all 

Mom look what I did!!!!

After the vacation there have been a bunch of appointments. Avery doesn't have to see ENT for 9 months. Gwen's AVT is happy with her word count. They will be getting their speech therapy appointments in the next few months and next week we get the big cardio appointment to see if Avery is to stay off her meds and to see if the pressures in Gwen's heart have lowered like expected.

This past week we also got to go down to the Royal St. John's Regatta. The kids loved it and this is the girls second one (third if we count their time in-utero)

Regatta 2013 (Avery & Gwen) 

Regatta 2012 (Gwen & Avery) 

I know there is more I want to talk about but I have two baby girls who are climbing all over me! Back to life

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.