Tuesday, August 16, 2011

BIG weekend...

Well, it wasn't so big as in lengthy but it was BIG as in Jasiu was away from the comfort of his home (besides the hospital stays) for entire two nights and days.  It was BIG and made me so nervous, but we did it and Jasiu did GREAT.

We started the weekend on Friday with a not so fun day at Hope hospital getting a swallow study and an upper GI study to see for sure if it's reflux causing Jasiu to refuse to eat more than 2-3 ounces of milk at a time even though he's still quite hungry.  This time I was more prepared and had dressed him in a snap less onsie so that there was no metal to be picked up on an x-ray, I brought my own bottle nipples since Jasiu is not a fan of the ones the hospital uses and brought lots of toys to distract him. He drank the 2 ounces of barium concoction, we placed him on the x ray table and even to an untrained eye one could see the liquid moving out of his stomach and around his esophagus. It did not look comfortable at all. It's final, he has a bad case of reflux and even though he does not throw up anymore, it's reflux is still happening. Personally, I thought all along that the NG was making him throw up even more than the reflux itself. 

The swallow study was good, and Jasiu is for sure not aspirating while taking the bottle and while eating solids so that was ruled out as the reason for his small volume intake.  Which is good news.  Yes you read that right, Jasiu is starting solids. At the suggestion of our speech therapist and GI we started to give him some solids, very little amounts of course but he is loving it and has no problems with it. The solids should help in keeping his milk and food in general on the bottom of his stomach so it reduces the tendency for reflux.  At first he was not so sure about this whole spoon thing, but now he shakes with excitement at the sight of a spoon. This is very good for us however baby food solids do not have much calories and since his milk/formula intake is almost minimal  on average 20-24 ounces a day he needs as much nutrition and calories as can get, so I will be contacting our nutritionist this week to see if there are any natural ways to enhance his caloric intake.  Weight gain has been increasing but very very slowly so I hope they allow us to keep it out and figure out a way to feed him with foods with the biggest nutritional bang.

Now for our weekend... we took the kids to our uncles summer house at Bass Lake, Indiana for a test run to see how Jasiu would do outside of the safe heaven of our house. It's not the most exciting vacation spot, but it's close to home in case of emergency, we trust that it's clean, it was only filled with close family who are all healthy at the time, we had ample freezer space for Jasiu's breast milk and we love going there because it's away from the house and a place to relax for a few days on a budget. We left after the evening bottle and Jasiu passed out as soon as we hit the highway and slept all the way through the whole two hours car ride and until we unpacked the car and got the midnight bottle ready once he took that, he continued to sleep just as he would at home and did great in the pack and play.  He slept great the entire weekend just as he did at home and ate well all day Saturday and not so well on Sunday.  Jasiu had his first pontoon ride on the lake as well and liked all of it except the sun. He's not a fan of the sun glaring in his eyes but we put up the top and had shade on half of the pontoon and that's were we were hanging out.  I'm sure he loved the fresh air and walks along the lake as well as all the attention of mom and dad since we are now both at work and don't get to spend much time with the kids during the day.

I was nervous half the time to see how he would react to a little more commotion and excitement, the car ride, etc and he did fine. But it was still relaxing and we had fun. I packed all the possible gear I needed, meds, thermometer, stethoscope, etc except the pulse ox machine... I realized half way there that I forgot it. Grant it he does not need it anymore, our cardiologist said that I don't have to check it daily or at all really, but I'm hanging on to it for dear life. I still check him once in a while for my own sanity's sake and he's doing well. You can actually see him have a nice pinkish color as a normal baby and he's in such good spirits lately no one would even know he was sick if that scar didn't peak out from the top of his onsie below his chin. His quality of life is great thus far and we love it. We love getting some normalcy back and being able to take him places, including church and family's houses.

Next big gathering for Jasiu.... Emily's 3rd Birthday Party this weekend!!

Emily getting ready for the water

First pontoon ride for Jasiu

Hanging out on the peer

with big sis, he looks like such a chubster here for his little 15 pound body

the one family pic of the weekend

play time with Emily

she loves to tickle him


  1. LOVE LOVE LOVE this update! I love seeing other little HLHS warriors doing so well! Praise God!!! Oh, and I can so relate to the pulse ox obsession. Guilty here as well. ;-) Glad you had a great time - the pics are beautiful!

  2. What a fabulous update:) I thought I would share this woman's blog about what she did to help her heart baby gain weight! Her child had a different condition, but here it is http://heterotaxysyndrome.com/2011/04/11/how-i-got-my-heart-baby-to-gain-weight/