Friday, February 4, 2011

Clinic Update Feb 2011

We left Eliza with nanny & pop today as she had a cough and I refuse to be one of those parents who take their kid to pre-school when they aren't well. Craig wasn't well either so he hung out at the cafeteria while Ruby and I went to clinic.

I always forget to prepare myself for the initial walk inside the hospital doors. It's like you enter another world. A world that exists purely on the fact that shitty things happen to kids. It sucks the breath out of me when I first walk in, but it only lasts for a second.

Because Ruby has had a bit of a runny nose, we were put in a room on our own, which was actually quite nice!

First stop, the weigh-in...and she weighed...6.595kg!  And she is 54.4cm long. Good work on both accounts.

Then the physio came to visit us. She is totally in love with Ruby and always insists on giving her big cuddles. Because Ruby is sitting up now, we can add some other aspects to her physio. Mainly bouncing her up and down and using an exercise ball. Physio for CF is fun for kids, as anything that pushes the air out quickly is good for their lungs. So bring on the trampolines and pogo sticks!

Next visit was from Ruby's respiratorist who looks after the overall care of Ruby. He gave her lungs the all clear and wrote of a script for more Creon. As I left, I noticed the script was made out to Ruby Creon so next time I'll be careful not to talk to him whilst he is writing!

Then we had a sputum sample taken. Tube down the throat, a bit of gagging, and it's all over. Hopefully nothing sneaky growing down there.

Last visit was from the dietitian, who came in with a huge smile on her face. She was very pleased with Ruby's weight gain and gave me the "gift" of letting me throw out the PolyJoule. (PolyJoule is powdered carbohydrate, when made up it is as sticky as superglue and I just hate it). We are still on a super dooper strength of formula though, until her weight catches up with her length a bit more. She asked me what I was doing with her solids, and she was very impressed with what I have been feeding Ruby.

And I felt really proud of myself. 

Choosing Ruby's food is the first time I have felt that I have total control over an aspect of her care. I can make my own decisions, my own informed choices. I chose to skip the goopy baby cereal and make a chia seed gel instead. I chose to add coconut oil to her foods instead of the normal lump of butter. I let Ruby decide that she was really for solids, and Ruby only. I may have failed at breastfeeding, but now I can choose what foods she is eating, and as I prepare it all myself, I know exactly what is going in her body. And, the best thing is, they were the right decisions, Ruby is doing really well.

For other CF mamas reading this, here are some questions we asked:
What is the "perfect" climate/environment for a CFer to live in?
"Your house". The doctors way of saying don't do anything drastic. He then said that coastal climates are best, due to the salty air and surf. Also, it is more important to have good health care close by, than the actual conditions of the environment.

Now that Ruby is 6 months, do we buy the next stage formula?

Dietitian informed us that there is no reason to change formulas, there really is no beneficial difference between them all. Discussed how formula companies are evil.

Time frame of giving Creon and continuing eating?
Creon 5000 lasts half an hour, so if still eating after half hour, give some more

Next visit in a months time! 


Anonymous said...

Sounds like Ruby is going great. You should be proud of yourself, not only with the great job your doing with her food, but also with the fantastic job you are doing as her mum overall.

I totally understand how you feel about entering the hospital. It's like entering a whole other world that is kept hidden behind closed doors and cheerful pictures.

Thank you for continuing to share your journey.

Oh Gorgeous Baby said...

I know we have had different things happen with our kids but I likened our premmie journey and NICU as a parallel universe with tinted windows that you can see out of but if your on the outside they can't possibly see in.

Yay for Ruby leaving PJ behind that stuff isn't nice at all.

Congrats on establishing solids and I don't want to see you write that you failed breastfeeding again OKAY? I am sure you did everything you could and that is not failing. If Ruby needs formula then she needs it. You know formula was actually invented to help those who couldn't feed their babies. I know its seen in a different light now but still the reason why it was designed was to save babies lives.

It is hard how you can feel like you never get to make a choice in your own childs life. I can remember parents saying this to me about their prems. I never felt that way as we had a really good relationship with our health carers at RNS.

Oh Gorgeous Baby said...

oh and one last thing. Airlie was 6.7kg at 12months. everytime i see 6kg that just reminds me of her.