Family Updates

Day 45 of being home!

So it's been a long time since anything has been posted about Ty's progress... but it's been busy, time consuming, and difficult for Mommy as I've finally adjusted to life at home.

There has been a lot that has happened in these 45 days. First off, let me say that Tyler is doing fantastic in our eyes.

In the beginning, Children's Mercy Hospital had set us up with a Home Health Nurse to visit Tyler once a week until his second surgery, but the stinkin' Case Worker, assigned to Tyler from Blue Cross and Blue Shield, denied him of Home Health care. She deemed him, "NOT HOMEBOUND." Can I just vent here for a minute? How in the world can an infant diagnosed with a very rare, one sided-heart condition NOT be homebound? He isn't supposed to go anywhere but to and from cardiologist appointments and pediatrician appointments. AND, Tyler has a gastric feeding tube. He takes nothing by mouth. Is that not reason enough for him to be granted Home Health care? So instead of a nurse coming to the house to check on him, I've been given a scale to weigh him every Monday and we visit our pediatrician and cardiologist once a month.

On October 26th, Tyler was able to spit up. That really concerned us because we were told that he wasn't ever going to be able to do that since he had the Fundoplication (the stomach tightening surgery). So, on October 30th we went to CMH's Radiology and had his stomach checked out. It showed that the Fundo wasn't failing and that there was no explaination for why he could spit up. But he does on occasion. It's never much, like 2 teaspoons or so, but still. I've started getting second thoughts about making him go thru that surgery if he was going to just spit up anyways, you know? The ONLY good thing about having his stomach tube is that I know he gets his heart medicines and that they get ingested.

On November 5th, we had a cardiologist appointment and they did the first echocardiagram since his stay in the PICU. It showed that he may need the cardiac catherization done sooner than right before his second surgery (when it was originally scheduled for), but that is still up in the air. What the echo showed was that he has a portion of his heart, the tail end of the aortic arch, that might be starting to close up. But his cardiologist said what she saw could be a number of things right now and that this is fairly common in babies with his condition. There is a number of things that have to be factored in and accounted for (like his entire heart isn't growing consistant with itself, maybe he needs an adjustment in his heart meds, maybe it was a faulty echo readying, or maybe it's "just the way Tyler's heart formation is going to be" until his second surgery, etc... ). So, another echocardiagram is scheduled for December 3rd, to check it out and see if anything has changed. I know, this may sound kind of serious, but the docs don't have us worked up since his blood pressure and pulses were great that day, and all of his other vitals, that they check on heart babies, were right where his needed to be. Our cardiologist told us to "not worry yet."

We start Occupational Therapy on Monday the 19th. This is just a precautionary measure to make sure he doesn't lag behind in development. She'll be checking his gross and fine motor skills for his age, as well as working on getting him to start taking things by mouth. (ie: a bottle or the breast) I'll also be learning infant massage!

Mommy has nicknamed him "Booger"... and he almost laughs everytime I say it! Tyler loves to smile and coo. His favorite sounds to make right now are Mahhhh and Ooooo. He moves his legs and arms a lot and is very alert when he's awake. He follows Andrew and I around the room with his eyes, turning his head to stay with us. He knows his name. He startles to loud, sudden noises, but is quite content when he hears big brother's obnoxious behaviour. Tyler could sit for hours just staring at Jarrett in amazement. It's his favorite past-time during car rides. He sleeps wonderfully at night! So much better than Jarrett ever did at this age.

Tyler is slowly gaining weight. However, it's not as fast as a healthy baby would be gaining it. A healthy baby gains about an ounce a day, but Tyler only gains about an ounce every three days... because his heart works overtime. When he was discharged from CMH on Sept. 30th, he was 7 lbs 2 oz. and this week he was just shy of 10 lbs. So not too shabby. Once we get to November 30th (exactly two months after coming home) he'll probably have gained a full three pounds; averaging out to 1 1/2 lbs. a month. The Doctors say they want him between 14-18 lbs. before his next surgery. I see that as a realistic goal for his rate of weight gain right now. He is still receiving my breastmilk thru his feeding tube every three hours.

We had a great Halloween and we pray for a wonderful, uneventful Thanksgiving and Christmas. Thanks again for all the love and support we've received from everybody out there. Hopefully it won't be long again before I find the time to post another update. It's just not as easy to find the computer time to do so now that we're home.

Happy Holidays!
Love, Kathleen