Friday, March 25, 2011

Firs Cardio Appointment

Today John and I got to leave the house TOGETHER along with Joe but only because we were heading to the cardiologist appointment. This being our first trip outside of the home I had to prepare for departure and get the diaper bag ready. Being the person that I am, I packed everything but the kitchen sink. Our diaper bag had a few extraordinary items like a stethoscope, syringes and what I call our son's instruction manual. This is a binder of documents I have from discharge, cardiology, medicines, dietitian, etc. It consists of his daily medicine schedule, food chart of intake and output and others. Of course, the doctor and nurses only want to see about 10% of the contents and mostly want to see how John is doing at home overall and not hour by hour.

Because of Joe's need for punctuality we were on time despite an unexpected outfit change and sponge bath since Jasiu decides he wants to puke. This was partly because I accidentally flipped his but above his stomach while placing him in a bouncy seat which of course warrants a puke from this guy. Also as soon as we walked in 4 others walked in behind us, making me so glad Joe likes to be on time since we would have been waiting much longer had we left a few minutes later.

The dietitian and the cardiologist both love that John is putting on so much weight, almost an ounce a day!!! They increased his intake to 75 mls per feed and decreased the Lasix dosage. No echos, ekg;s or x-rays today so not much else excitement happened. The doc congratulated Joe and me for graduating the first week home relatively well and without any 2am pages to the staff. We also were reassured that just because this baby is a cardio kid, doesn't mean that all other "regular baby stuff" can and probably will happen such as gas, colic, constipation. We suspect Jasiu is constipated because of his grunting before a bowel movement and possibly colic as almost on the hour 9pm-11 he has crying spells on and off with little or no consoling him. Again, this baby, we were told, was to cry minimally. Apparently Jasiu skipped that chapter in the HLHS guidebook but seemed to cruise through everything else because his progress has been remarkable.  The only other thing we have to work on is still feeds and we were go given the green light to increase his bottle attempts to as much as he would tolerate as opposed to strictly 15-20 mls per feed. We need to look at him and make sure he's not stressed and doing well and see how much he tolerates the rest through NG.

I am now working on finding a nice professional photographer to come into the house and take baby photos of Jasiu because he may have deeper complexes down the road once he sees that we have a 20x18 poster shot of Emily on the wall and not him. So I need to coordinate the photographer and home nurse, which happened to be a friend, at the same time in our house so that we can take out the NG for photos and I can be supervised putting it back in. I'm sure JJ will appreciate that we take pictures of him without the "mustache".

So now that he's progressing nicely we keep praying for more success with feeds so Jasiu can be nice and plump for Dr. Illbawi for his second surgery.
Thanks everyone for the love and support, Jasiu sends kisses to all !


  1. I am so happy his appointment went so well. Good job on the feeds and getting him to gain weight. I will be keeping you in my thoughts and prayers.

  2. Wow! He is just so amazing! I can't believe he's gaining almost an ounce a day! Totally unheard of for a heart baby- keep up the great work mom and dad! :) :)

  3. My sister in law is a photographer and also familiar with HLHS being Austin's auntie if you'd be interested in her number let me know. Sounds like you guys had a great visit! Good luck with the feedings!!! <3

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