Hope everyone had a wonderful Christmas! I'll apologize in advance for the length of this blog, but lots to say and I haven't written in two weeks!
It's been a roller coaster two weeks, with highs and lows. As Cameron's doctor has explained several times, sometimes babies tend to do worse right before they go home because we are asking them to do a lot (eat more food, on their own, with less oxygen). It seems everything has been in fast foward the past couple weeks with lots of specialists coming and going to assess Cameron. Mike wrote his folks a nice email explaining Cameron's recent hurdles, so I'll paste below to save myself some time. If you don't feel like reading all the medical mumbo jumbo, make sure to at least scroll down and read about Cameron's Christmas and see the latest pics.
Right now Cameron is doing pretty good, but there are still a lot of things going on. The biggest thing right now are these "episodes" (unfortunately called “death spells”) he's having in which he "clamps down" and stops breathing. When this happens his blood oxygen drops down to anywhere from 0 to 50 (should be 88-92) and his heart rate goes as low as 30 and below sometimes. Unfortunately, Cameron can't just snap out of it and start breathing again. Obviously he won't be leaving the hospital while he is still experiencing those.
The next big issue is his whole mouth, throat, palette, suck/swallow/breathe mechanism. He's had several issues and they decided to take him off of bottle feeding and just do feeding via feeding tube for the time being. This could last anywhere from a few months to a few years.
Although his oxygen needs have been reduced significantly, he still requires oxygen. He’s on a very minimal amount of help at this point (1 liter @ 80% oxygen today if you’re keeping records). This does NOT mean he’s on 80% pure oxygen, when you’re on nasal prongs a lot of that oxygen is released into the air so it comes down to about 21-3x%.
He had an appointment with the ENT dr today and he said aside from some irritation with the vocal chords, all looks good. The pulmonologist came by as well and said he wanted to hold off on any further digging beyond the vocal cords (to test for things like tracheomalacia - http://en.wikipedia.org/wiki/Tracheomalacia, which he may have). Some of these things he will just grow out of in 18-24 months so they aren’t worth having to put him through more stress to do the test unless his episodes don’t subside.
To remedy the episodes, he’s having surgery on Tuesday (we just found this out today) for two procedures:
A) a Nissan Fundoplication (http://en.wikipedia.org/wiki/Nissen_fundoplication), sounds crazy and it kind of is. They feel that severe reflux could be causing his episodes so this procedure will possibly reduce that. They are going to take the top part of his stomach and wrap it around the esophagus and stitch it to itself to reduce the amount of reflux that can occur. Wikipedia has a good picture if you’re interested. With any surgery there is a risk of infection and he will, unfortunately, have to be intubated again for awhile while he is healing. You can read about all of the other complications, etc. on Wikipedia (or any other site). Yes, he can still throw up after the procedure, in case you’re wondering (like we were).
B) Insertion of a gastronomy feeding tube (http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastronomy_tube.shtml) which is a permanent feeding tube that will come out of his side. This will hopefully help with the reflux as well and supposedly it makes it easier to feed him since it will just release his food to him via the tube throughout the night. It literally looks like the little buttons you see on the side of an inner tube, only it is for his stomach.
So, the long and short of it is that he’s having another surgery on Tuesday, still needs to get his cleft palette surgery at 1 year as well as kidney surgery sometime as well. When he comes home (probably mid January to early February), he’ll be on oxygen and a feeding tube. We don’t have any idea what to expect from any of it but I think we’ve done really well with everything that’s been thrown at us over the past 100 days. Aside from the episodes, we’re pretty used to all of the tubes and machines and feel comfortable being an active part of his care. Like the pulmonologist said today, you really can’t describe what it’s like going through a NICU experience unless you’ve been there (one of his kids was born at 27 weeks like Cameron and they lost their other child born at 35 weeks due to some syndrome that wasn’t compatible with life). Some days are good, some are bad, life is life… we are thankful for Cameron regardless of any of this.
Cameron was being particularly fussy on Christmas Eve because that's the day the ENT doc did his larengscopy (I'm positive that's spelled wrong). Darlene, one of the Nurse Practitioners, put Cameron in the sleeper hold to calm him down. She said it works wonders on her grandson, and Cameron seemed to like it as well.
Christmas day was wonderful. We brought Cameron's gifts up to the hospital and spent all afternoon just hanging out and playing with him. We even got treated to a free lunch in the hospital cafeteria. Mike had some yummy pesto salmon, and I tried the pot roast. Should have gone with the salmon. Here's a pic of Cameron's room on Christmas day-
Mike helped Cameron 'open' his presents while I shot pics and video. I may post clips up to youtube at some point if I can figure out how to download them off my video camera (it's an old fashioned tape model). Here's one of Mike showing Cameron the Animal Train. Sara and Pablo gave Cameron this outfit for Christmas. Super cute, but I think the legs are just a bit too long. Almost looks like his feet are bent backwards (they aren't).
The day after Christmas (or Boxing Day for our Canadian and British friends) we got to take Cameron out on a walk (just in the NICU halls) using a sling. It was our first time talking him on a walk! Cameron really seemed comfortable even though I thought he looked smashed in there. I loved the sling, but it's a hospital loaner, so I need to get one of my own. Mike's got a friend in Canada that makes them and if I can get my act together to send her some fabric, she'll make me a nice custom one. Here's a link if you want to check out her stuff, it's so cute! http://www.small-potatoes.ca/
Sunday was Cameron's 3 month birthday and ironically his 3 day birthday if you are using his adjusted age. Since he was due on Christmas, they adjust all his developmental goals, etc to that date. At 3 months Cameron is already up to 7 pounds, 15 ounces. Just one more ounce to go to 8 pounds!
Here's a fun shot of Mike on diaper duty. I swear, he is the fastest changer in the West. He gets Cameron out of those diapers and into his outfits so quick it's amazing. Notice the blur on his hands in the pic below. :) And speaking of outfits, Cameron has officially outgrown all his premie outfits! He is quickly filling out the newborn outfits too. I'm thinking by the end of the week he'll be in 0-3 month.
We've discovered that one of Cameron's new favorite things to do is to sit up on Daddy's knee and look around. He says, "Mom, why are you staring at me?"
And if you actually made it that far into this blog, then you're probably as tired as Cameron and will enjoy this pic-
Have a safe a happy New Year!
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