Archive | February, 2010

Oh the feedings…

Gabi is doing great.  Her feeds are the biggest challenge for us now.   We have an appt at CHW with the feeding specialists in March, but Dr. Rao’s nurse is trying to pull some strings and get her in sooner. She turns a dark purple when she is gagging and choking on her spit up and then coughs and sputters out the throw up. Sometimes it is just a small spit up that eventually makes its way out, but other times it is projectile and shoots out of her mouth so far that it if baby puking was an olympic sport, Gabi would cerainlty get the gold medal!  The kids cheered her on this morning and gave her a quick gold medal ceremony. We found it hilarious or maybe we were just delirious. A little of both.

I was trying to get clearance over the phone to try adding rice cereal to the formula to thicken it up a little so it wouldn’t come back up as easily.  Never got the clearance because they want her to see the GI doc and feeding clinic first, but guess what?  Yes, I tried it.  I knew it wouldn’t hurt her so I went with my motherly instincts and went for it.  Well, it didn’t help anyway.  The spit up and vomit was just thicker too.  Oh well. A for effort, right?

She is getting big and a lot stronger.  Therapies have started and are helping her a great deal.  I check her sats often and they are hanging in the mid- 80’s which is excellent for Gabi!  She is doing well… we are quite blessed.

Love,
Teri

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2 follow up appts

Gabi is doing great.  We had a cardiology appt up in Milwaukee on Monday and everything went well. Dr. Rao was there and said she was looking good.  He did tell me that at one point in early Fall, a lot of the docs were worried about her.  But now he is so happy with how she is doing!  And I am SO happy he is back from his trip.  He is from India and he visits his family there every January for a month. It was fun to hear all about his journey.

Gabi had labs drawn and a chest x-ray and everything looks good.  Now, the plan is to try and wean her off some of her meds.  He had taken her off her lasix but with her recent hospitalization for the virus, she was put back on.  In a week, we will take that dose down to once a day instead of 2.  He also wanted to wean down her clonodine patch ( a transdermal therapy) for anxiety and blood pressure.  On Monday evening, I followed his instructions to cut the patch in half and see how she does.  He explained that some babies don’t have any reaction to a lower dose, others get more pukey and irritable. Guess which category Gabi fell in?  yes, the extra pukey and irritable.  She was up for 2 nights in a row throwing up.  We decided to put back on a full patch and try going down to 3/4 of a patch this Monday.

That BNP number that is used to measure heart failure was at 265, down from above 600 a few months ago.  He said her heart is still working hard, but def. healing from the surgery. We don’t have another card appt for another 2 months!

Here is a picture of how they do the chest x-ray.  It looks like a medieval torture device…she loves it, as you can see.

This morning, we had an 8 month check up at the pediatrician.  She has now gotten the clearance to catch up on her vaccinations.  She got 5 shots today, which 2 included the synergist, for RSV.  This is only given to high risk babies and toddlers and costs $1200 per shot!!  Thank goodness for insurance.

We have PT, OT and speech starting to come to the house on a regular basis now.  They are starting at once a week and will ramp it up to twice a week each soon. Gabi is going to be working hard.  I am also waiting for a call to schedule an appt with the feeding team at CHW in Milwaukee.  This will include a GI study, feeding specialists to conduct a swallow study and a nutritionist to make sure she is getting the correct amount of calories. Right now, she is just getting formula, but at 8 months, she needs to start getting baby foods, but they have to make sure she will not aspirate if and when she is fed by mouth. I have been told that starting baby foods will help with the puking and gagging.  It is too easy for liquids to come back up and her stomach is not stretched enough to hold all the amount of liquid she is getting. C’mon smashed peas and bananas!

That’s about it for miss Gabrielle.  Doing well.   Don’t forget to ask me about the auction on March 6th, if you are interested in attending or donating an item.

My happy girl

Love to all-

Teri

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