2-6-2009 Zachary Update

It's been a pretty crazy and busy week. This is Zach's 40 week's gestational week. He was due on or between Feb 1st - 6th. He's 7 lbs .6 ounces. So far this week we've had a possible Vitamin D deficiency worry (one of his labs were elevated for bone break down - not high just elevated). They tested him again and found his calcium/potassium levels fine so he ended up not having a vitamin D deficiency. So that was one thing less to worry about.

Then, we had his MRI done Tuesday, results in Wednesday and what the Neonatologist was saying (just reading from the report) did not sound that great. Further research online didn't make it sound any better. They had found DEHSI (Diffuse excessive high signal intensities) on his MRI - Generally relates to White matter damage in the brain. Now in about 80% of VLBWP (Very Low Birth Weight Preemies) you'll see DEHSI. The thing is these scans they're using to find this are very new (within the last 5 years) so they don't really have a lot of data to show what DEHSI means long term. The do know that if they find a lot of DEHSI on a scan that generally the children at 5 yrs will have mild to severe learning or motor skills impariment.

So with that being said when the doctor told me they found it on his scan I was immediately alarmed and wanted to know more. The MRI report was vague at best. It also said that his Myelination is normal for age. He's had no hemmorage or masses. He's got some areas where his brain has not grown yet (very normal in preemies) that the radiologist said was atrophy. However, I'd asked for a Neruologist to consult due to the vague report he stated "You can't lose what you never had". He explained that the radiologist should not have used that term. Basically, the preemie's brains take a little longer to finish growing than a full-term normal baby. He's perfectly fine in that regard and may take up to 2 years for his brain to catch up with other full-term babies. So his cranium is full size but his brain doesn't completely fill it up in all areas which is normal for a preemie.

So the Neurologist was great he explained that although they found DEHSI on his scan it was so minimal that they almost didn't note it but they were erring on the side of caution. That's good because the less of that he has the less overall damage to his white matter he has. Meaning, long term his fine motor and mental abilities will be minimally impacted. The Neurolist said that we just need to watch him for the next 2 years and as long as he's reaching his milestones with adjusted age (give or take a few months) then we don't even need another Neuro follow-up. If he's not then we should get another MRI at age 2. So, that's one less thing to worry about.

While reading some of the reports about preemies and MRI scans I was reading about extreme low or high muscle tone in preemies and that both can be a sign of neuron damage. Zach has always had high muscle tone and could pick up his head/body, push off with his legs and attempt to crawl for the longest time. He was able to do this nearly since he was 1 month out of womb which is exceptional. Most newborns can't pick up their heads, crawl etc. So when I read that can be a bad thing I asked for a PT consult just to see what they think. Too much muscle tone can cause the tendons to stiffen etc and cause problems for walking etc later. The PT did her workup today but I've not spoken to her the OT she called in said that she didn't find anything of concern so that's good I'll know more of what she thinks on Monday.

So the OT is for some feeding issues. I'd been reluctant to have them use the blue nipple on bottling him becuase it's a faster flow. Some of the nurses want to use it because it's easier for him to suck and get milk ie less work /time for him. The less time he feeds the more energy he has to grow. However, faster flow nipples is the main reason babies get nipple confusion and won't take to breast anymore. Problem is when they use the green slower nipple with him he works so hard to get the milk by the time he's down to 10-15 cc's left he's too tired to finish or thinks he's full and gives up. Well the OT being called in means they're using that as a last effort so he can go home. We can't take him home until he's on all feeds no tube, and takes all from the bottle/breast and doesn't need supplementation. If we can't get him to take full bottles they'll suggest a G Tube (it's a tube that goes directly into the stomach). I really doubt we'll have to get that far considering tonight I've successfully 3 feedings in a row gotten him to take the entire bottle with the blue nipple. So seems like that's going to be our choice atm. Hopefully, for the rest of the weekend he'll continue on this trend and I'll have good news for the OT. Hopefully, she can help with him getting too much air while he feeds not sure there's any help for that but hey I'm open for suggestions lol.

So it's been a rough week as you can tell a lot of worrisome things and most turned out ok thankfully. With luck we'll get his feeding issues worked out and his oxygen requirements will continue to be minimal. He's had some brady's (heart rate drop) last couple days with this new lower flow oxygen as long as it's not excessive they won't turn him back up. So with luck he'll stop having them soon and it won't be an issue anymore.

S