Jackson was born August 2008 with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect affecting the left ventrical and aorta. Three days after he was born he had the first of three open heart surgeries at Primary Children's Medical Center in Salt Lake City, UT. In January 2009 he had his 2nd surgery, the Glenn, and in May 2012 he had his third open heart surgery, the Fontan. He is currently doing great and you would hardly know he's anything but perfectly healthy. He's sweet, cute, and as wonderful as they come and such a joy in our lives.
Jack had his cardiology appointment this morning and it went great. He cried for his xrays, like usual, but I might cry too if they stripped me naked and held me on a cold, hard table. Other that that he was very well behaved.
The little fella is getting to be not so little, weighing in at 12 lbs 9 oz. Dr. P was very pleased with his size and how well he's eating. His sats were in the low 80's on his 1/4 liter, and his EKG and xrays looked good so we are on track for his Glen in January which they are going to try to schedule this week. Next steps are another sedated echo in three weeks, then an MRI a week or two before his next surgery, depending on when they schedule that. Dr. P said that in his experience kids who start out doing well continue to do well, so that was really good to hear as Jack has done great so far. We hope it continues to be true.
We sure do have a lot to be grateful for this Thanksgiving. In particular we are grateful to all of you for your prayers and well wishes for Jack. We feel the power of those prayers every day as they strengthen us and help us through each situation as they come. Our sweet baby who we weren't sure would come home from the hospital is now thriving and growing and getting trickier by the day. It is such a blessing.
Jack sounds a LOT better today than he has the past few days, so I think we're on the mend. He still has a cough, but he's upgraded from sounding like a chain smoker to wheezing like he has asthma, so much improved. Our only problem now is that he just decided to wake up from his long afternoon nap that he's supposed to be taking after just 20 minutes. :) Mom to the rescue.
Not much to report on Jack, thankfully. He still coughs like a chain smoker, but he's not coughing a ton and he is still fairly chipper. He's not eating quite as much as normal, but he is eating and we're getting wet diapers so basically we're just waiting it out, hoping he gets better soon.
Unless things get worse I'm going to avoid taking him to the doctor since there isn't really much they can do for him anyway. He's too young to take any medicine so I'm just loading up on the vitamins and healthy food, hoping they'll pass through my breast milk into his system to help him out. It's worth a try.
Thanks to all those praying for him and wishing him well. Hopefully we'll have healthy news to report in a day or two.
The good news is that I finally got them to schedule us for a cardiology appointment. We go in to see Dr. Pulchaski next Monday. Too bad it took a trip to the ER to get them to schedule it.
Well, we tried to avoid it as long as possible, but Jack is sick. He has caught a small cold or virus so we spent about 5 hours in the ER yesterday at PCMC.
Saturday night as I was putting Jack to bed he choked a little on some phlegm which set him off crying for nearly 2 hours and left him limp and breathing heavily. He looked awful so I called cardiology and they said to bring him in if he didn't recover within 30 minutes. Hardy gave him a priesthood blessing and a few minutes later his breathing calmed down significantly, but by morning he had developed a raspy cough. He also had very little to eat during the night and hardly peed at all - all bad signs. When I called cardiology in the morning to see when I should get nervous since any little bug can be a big deal for babies in the Norwood Stage, he said we should bring him in.
We got to the ER around 10AM and thankfully it was pretty empty so they got us in fairly quickly for a chest xray and EKG. The results showed that his heart is slightly enlarged which concerned the ER doc that he might be in heart failure. Eventually a cardiologist showed up and determined that everything was okay and he's just a little bit sick - not heart failure. Whew! They considered keeping him over night for observation and then decided that Hardy and I could handle it. Since then he is still not eating or peeing great, but he's doing better. They also sucked out some of his boogers and are testing for a virus so they can determine if it is a strain we should be worried about. We are still waiting on those results. We were finally able to bring him home around 2:30 p.m.
Thankfully Jack was a trooper the whole time. Despite not feeling well, he managed to grin at several of the docs and the radioloists who were poking at him. He barely even flinched as they put on and pulled off all the EKG probes. He's now sleeping pretty soundly, as are mom and dad. Trips to the ER are exhausting. The only perk is that they have really good coke at the Rainbow Cafe.
Jack is still just growing, learning and doing well. He loves sucking on his fingers, even when he's also sucking on his binky which, as you can guess, causes complications. He still thinks I'm hilarious and loves to come in the kitchen and cook with me. I put him in his bouncer and sing Christmas Carols to him as I make dinner and he has a riot. Hardy laughs at me too, but for different reasons than Jack.
We still don't know when his next cardiology appointment will be. It was supposed to be next week but they still haven't scheduled anything despite my phone calls. Hopefully we'll get in before Thanksgiving.
Serously, is there anything cuter than a grinning baby in tiny overalls?
Cute Jack continues to do well this week. In fact, at the moment we are doctor appointment free. Of course that's only because we are waiting for cardiology to call and set up his follow up appointment and the pediatrician to call an schedule his RSV shot, both of which should happen within the next 2 weeks, but for today we feel kind of normal.
Jack's latest tricks include spitting bubbles (and sometimes his medicine), and he's getting better every day at grasping his toys. He's also discovered his voice and loves to chat in his cute little boy voice for a very long time. I keep trying to record it, but he gets distracted by the camera. You'd think he wouldn't even notice the camera anymore and would just assume it is an extension of his mom since I take so many pictures, but no, it mesmerizes him.
I can't believe how quickly the time has passed. He is so sweet and doing better than I ever could have hoped. We pray every day in gratitude for Jack and how well he is doing and hope he keeps up the good work.