blood pressure and Avery part 2

I forgot to mention that Avery's nephrologist thought she was a boy (he sees hundreds of patients a visit and its been since April?)

She was also in green and blue, and honestly babies are hard to tell apart. Avery is a unisex name, just like Rhys.

My poor short hair girl.

Avery Sept 2013

Better then her bald big brother. It took forever for him to get any hair at all.

Rhys Sept 2009

I teased him after, and he felt horrible. But at least it is better then strangers thinking Gwen is Glen.... That has happened more times then I want to admit.

Do I look like a Glen??? Maybe?

But I love her nephrologist! He is awesome, and will give you a random medical lesson whenever you see him. Yesterday we talked about the history of the two different drugs Avery was on and I am a type that enjoys learning new random info.

He also talked a bit about her voice and vocal cord mentioning that as she grows the paralysis won't effect her voice as much. Not just because she will learn to cope with it but because the bigger the throat gets the more space air has to move past the cords so it won't be as raspy. Makes since, don't know why I haven't thought of that myself.

I also forgot to mention that even with her having a meltdown during them taking her blood pressure, it was still lower then it needed to be. So progress! And it makes me feel better knowing that even with her epic tantrums she isn't doing any damage.

And man is her temper epic!

blood pressure and Avery

Avery had her nephrology appointment today. Her nephrologist travels in from Nova Scota twice a year, and he is happy with how she did. He wants her blood pressure checked in November at her pedi appointment and he will see her again in the spring.

He also said that they will keep a close eye on her blood pressure at 7 years old until she hits puberty due to a reappearance in blood pressure issues.

Avery Sept 2013

We bumped into some NICU buddies all in for appointments. The Nephroligy day is a busy one, because something like 50% of pre 32 weekers will have high blood pressure when they hit term. And its getting caught more frequently in our NICU with a lot more pre 27 weekers staying in hospital past term. Avery would have been discharged before her diagnoses if she was a singleton but thanks to Gwen's O2 habit she got caught early and on meds right away.  

While in the hospital, we dropped by physio to let them know that she isn't walking on her feet yet. Miss Ave will walk around on her knees and if she takes your hands she toe walks, I did too as a child. I'm not that concerned, but its better to get it addressed and it be nothing then not and wish we did earlier. That, and it will reassure some family members. So she is getting seen next week.

Not looking forward to the fact that I added to the craziness that is the end of Sept appointments, but what can you do as a preemie parent?

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.