Our Little Celebrity

Back when Scott was in the ICU there was a TV crew doing a segment on Pediatric Cardiology. They chose Scott and Mindy to be part of the segment. Click the link below to see our TV stars(Scott and Mindy appear after about 4 minutes).

http://link.brightcove.com/services/link/bcpid1795749292/bclid1799152753/bctid1886150751

Our 3 Kilo Boy!

Hi everyone,

As you can see we've slowed down on our blog entries. At this point, Scott is very stable and basically in maintenance mode. His 6 week course of antibiotics will finish on November 11th, which is Will's birthday and 1 week after his original due date!

Right now we are just working on getting him to take his food orally (either by breast or by the bottle). We try to do 3 feedings each day (2 breast and 1 bottle) but he still needs to be supplemented with breast milk down his nasal feeding tube. We are hopeful that he will not need the feeding tube by the time he can be off the antibiotics. But he is gaining weight each day and today was just over 3 kilograms (6 pounds, 6 ounces). He's becoming quite the big boy compared to other preemies in the nursery!

Love,
Mindy (& Phil & Will)

Photos

No news is good news

Hi all. Sorry for taking so long getting a new post up. Basically all is going well and according to plan. Scott continues to eat well and increase his volume. He does a bit more with the bottle and breast every day. He now weighs almost 6 lbs. They took out his stitches today and there is no sign of infection. The biggest threat is him being snatched away by one of the nurses because he is so cute (photo to follow soon). Plan is for Scott to come home in either 2 or 4 weeks depending on his course of antibiotics. We are looking forward to that day. Dad and Arlene are visiting this weekend and got to see him this morning. Thanks again for all your support. Phil

Slow and Steady

The past couple days have been fairly uneventful, which continues to be a good thing. There are no signs of the infection flaring up. All recent cultures have been negative and his wound site looks clean. His feeding has increased to 50 ml every 3 hours and Mindy has started to introduce the breast but we think it will take some time before he is ready for that. He is now a whopping 5 lbs 5 ozs! His breathing is stable but still a little fast for our liking, but that seems to be normal for a preemie at this age. There are no signs of any heart problems (knock on wood). We will upload more pictures soon. All the nurses think he is adorable. Of course we do too but we are biased. Will draws pictures at preschool for Scott and we hang them on the wall next to his crib. Thanks again for all your support. Phil, Mindy, Will and Scott.

Progress

Hi all. Sorry about the delay in postings. Things have been pretty uneventful, which is very good. Scott continues to eat well (not exactly eating, but at least digesting all the milk that is fed to him through a tube). His breathing had gotten faster so they put him back in the CPAP device (to help expand his lungs - see picture) and it seems to have helped. So much so that they took him off of it after two days. Now he is back on the nasal canula and is basically breathing on his own.

He has moved into crib so it feels like he closer to being normal. He is getting bigger every day and is even wearing real onsies, although they are way too big for him.

The doctors are evaluating whether at some point they can change his antibiotic to one that can be taken orally, which could allow us to go home sooner. It's not certain, but a nice thing to hope for.

Thanks again for all your support and prayers. We really appreciate it all.

Phil, Mindy, Will & Scott

Update from the Weekend

The weekend in the NICU was pretty uneventful which is a good thing. Scott continues to go up in his feedings and by this morning should be up to full feeds based on his weight. His breathing was still a bit faster than the doctors were comfortable with so he is now back on the nasal CPAP. It definitely helped as his respiratory rate did come down. I think they will see how he does for a few days and then try weening him back to a nasal cannula. The nurses also wanted to try nipple feeding over the weekend (first with the bottle and then moving to the breast) but didn't feel comfortable with his high respiratory rate. Maybe we can try once he's back on the nasal cannula.

My mom was in town this weekend and got to hold Scott for the first time which of course she loved! He also was finally able to be swaddled which he really liked - our little burrito boy!

Thanks again for all your good thoughts - hope everyone is doing well.

-Mindy

Back in the NICU

Scott was able to move back to the Intensive Care Nursery yesterday afternoon. The nurses and doctors will focus on getting him more stable and "fattening him up" as they say in the NICU. They were able to remove his chest tube this morning that he had from the surgery on Monday and I think he will be more comfortable now. His blood cultures (from the infection) since Sept. 30th have been negative so we are hoping that will continue over the next few days. His breathing today was faster than it had been yesterday but the doctors aren't too worried yet. I guess the breathing can be variable for a couple of days after extabation plus his lungs looked a bit wet from the morning x-ray. He's still tolerating the breast milk quite well so they are continuing to up in his feeding amounts. They are still feeding him directly through a tube in his mouth but hopefully soon they can start getting him used to a nipple from a bottle and then from the breast. The occupational therapist says he has a good suck but the eating process is going to take some time. Everything in baby steps...
-Mindy

Scott 8 days after heart surgery - no more breathing tube!

Scott immediately after his heart surgery on September 23, 2008

Progress

Scott made some great progress today. His breathing was strong enough to remove his ventilator tube. He looks so much better and is breathing very well on his own. I was able to hold him for an hour or so while I visited this evening. I will post some photos tomorrow. He still has a nasal canula (small prongs in the nose for a bit of oxygen), but it's contribution is small. His feedings are up to 16 ml of breast milk and he is still tolerating them well. There is even talk of moving him to the nursery tomorrow if they have space. It would be such a relief. While everyone in the PICU has been fantastic, it is still for very sick children and Scott will be better served in the NICU focussing solely on getting bigger and stronger. Plus it is quieter and more relaxed. It looks like the IV antibiotic regimen will be the full 6 weeks so the NICU will be a better place to spend that time. More to come tomorrow. Go Sox! (and I don't mean the White kind). Phil