Gaining square footage

So we moved into our first house back March 1, 2012 during the girls NICU stay. In the first month we replaced the floors and wall colours in the kids rooms, finished the basement into a playroom. We've been putting off the living room because other then the ugly accent wallpaper and the paint job that I can sorta live with for now it is in decent condition.

The textured painted wallpaper seems to be barely staying on the walls and I have jokingly threatening to take it down.

I wonder if the twins heard me...

Avery pointing to their handiwork

I was in the bathroom and when I came down both girls were in the corner, Avery sitting on the end-table. So there is paneling under the wallpaper. After all the layers of flooring/wall's we have encountered I shouldn't be surprised. Can anyone say three layers of carpet in the girls room? Or three layers of walls in the playroom? We jokingly have said more then once that we gained square footage. 

So what to do??? 

After a bit of debate we decided that we wanted to take down the wallpaper before and the paneling looks better then the wallpaper,or the wallpaper with a massive whole.

only 30 mins in and its coming down easy 

What things have your kids done while you were in the bathroom? Next time I'm going to give them plastic scrappers. Just kidding!

 

1 appointment, 2 appointments, so many appointments!

Physio went well, we just have to keep Avery off her toes. So no more taking her hands for tip toe walking family.

Her physio therapist will see her again in a month, but she thinks that she will be walking walking by herself.


We also got the call finally from the speech language therapist office, they both were referred in April 2012 and they have separate appointments in October. Long wait list, even longer then what their letter suggested. Hoping to be able to get them on the same day for latter appointments.

Avery & Gwen 

Three little steps

She did it!

Well, only once. But Avery took three steps.

We still are seeing physio on Tuesday, who knows what is going to happen but yay she did it

Eye appointment

Both girls had their followup eye appointment today and nana Joyce came along too. It was the quick one, no drops or anything. Gwen was great and was in and out in under 5 min.

Gwen

Avery...

Well, Avery is a different story. She has this fear of the outpatient clinics now and freaks out when she goes into one. So after coaxing her into looking for the test she did as well as can be expected. She is still slightly nearsighted and will continue the trend, we don't know if she is much more nearsighted but we know that she still is. Joys of her genetics not being premature.

Avery with the parent she takes the most after.... well, physically 

Now we don't need to go back until March 2014, when they will be getting their drops again. The long appointment.

Next up? Physio for Avery next week.

But I'm still in it

Between starting appointments up again, and gathering pictures for Gwen's scrapbook I've been rather reflective. I'm sad that Avery now has to restart physio because it feels as if it is a step backward. But I can't be too sad because I don't know if she will need beyond the next appointment. And honestly it is better to get her checked out then to leave it be and not know.

I heard someone recently from some 9/11 documentary or something that on the day he was freaking out and a police officer said "don't worry you are just suffering from post traumatic stress" and he responded "post traumatic, but we are still in the trauma" or something to that effect

Now how does that relate to me?

Not much for me personally, but I do know that many parents that live through the NICU suffer from P.T.S.D.

And honestly I can understand why. You go day by day, moment by moment not knowing if your child is going to die. Alarms startle you wondering if this is their last struggle and if they are going to give in.

Avery

That is unbearably hard.

I thankfully had a great nurse say to me in the first day to ignore it all. They do. Look at their colour and you will know how they are really doing, sometimes the monitors are overly sensitive or wrong and the baby is on an upswing. I quickly could tell you if I should really be worried based on their colour. To this day if one of them is "off" I know by looking at them. I don't need a thermometer, I can tell that Gwen turns a purplely blue and Avery gets to a translucent gray.

Gwen's space 

Eventually for me the sounds of the NICU were calming, it reminded me that the girls were where they needed to be and in capable hands.

But I know other parents found it stressful. Matthew was rarely comfortable in level III. Without a doubt he would be there for 10 mins max and need to rush to the washroom being gone for 15+ mins. It was an upsetting place for him, I teased him that it was his subconscious reacting to being back in the NICU.

Matthew & Gwen

Other parents would get a look of panic at every alarm, and given that there were 8 babies in level III between the two rooms and sometimes 5+ things that could alarm on each baby it was rarely quiet.

Its constant noise. I've heard it liked to a battle field. The non-stop noise, babies fighting for their lives along side of their nurses, doctors, and specialists. As with someone who goes through a war, they are more prone to P.T.S.D.

Avery

And it follows you

I'm still in in per say, were is the post?

All of the appointments.

All of the health issues.

Always having to do things differently because they were early.

I know how lucky we all are. The girls are behaving like normal 20 month old's, there are few lingering health issues, and no one has P.T.S.D.

But a break of 4 weeks from appointments is not the norm. I shouldn't be recognized by hospital parking staff. They shouldn't know my kids names.

We are still in the NICU.

our view from our care by parent room in the NICU 

Not physically, but mentally. We have to isolate ourselves in cold and flu season, at least for another year until they are on their third. We have to memorize countless procedures, appointments, specialists, and health issues.

I can only imagine how hard it is for the parents who suffer from P.T.S.D. Constantly having to relive it.

Eventually this too will end, and we are getting discharged from appointments and specialists. But for now we are still in it.

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?