2-5-13 Update – Crisis and Celebrations

I can’t believe it is already 5 days into February. Happy birthday to my nephew Marc who will be 11!  Well we got through the whole MRI, and had the good news that they didn’t think they needed to do anything at this time and just wanted to re-check in 6 months with a “quick” MRI scan that Xander will not have to be sedated for.  It is scheduled for his 1 year adjusted date of July 10th.

They basically said he has a big head. His head is growing faster than the rest of his body.  He is in the 0th percentile for height, around the 10th percentile for weight and 54th percentile for head circumference.  The head is also growing faster than his brain leaving extra space for extra fluid all over, not just in the third ventricle like the Dr who reviewed his head ultrasound had said.  The neurosurgeon kept commenting that “his head looks great!” not sure if that was because he didn’t have the preemie “toaster head” or what lol.  He even measured Cory’s head and mine to see if genetically big heads run in the family.

Playing and waiting for the MRI.

Playing and waiting for the MRI.

We were hoping for a bout of calm and for me to be able to work for a while without having to take PTO for appointments and build back up my time. I think I am down to 12 hours of PTO uggg.  Thank goodness my work has been flexible with allowing me to make up time on Saturdays or Sundays.  The calm was not to last.  I don’t know what it is, maybe starting Xander’s life in the NICU has led us to be so diligent in watching everything about him.  This past week he was not wanting to eat his bottles, refusing them even at times.  His bottles came home from daycare half uneaten, but she said he would eat his solids just fine.  Then we started seeing odd things in his diapers on Wednesday night and worse Thursday morning. Green spots around where his willy touches the diaper, and then even red like blood clots we thought.  So we make an appointment of course with the Pediatrician, and I take him in along with the weird diapers.  The Ped even thinks they look weird and joked about us feeding him asparagus.  We were sent home with those wonderful baggies to catch a urine sample with and wait to see if it happened anymore.

Well It didn’t, except one on Friday that had little pink dots in it.  The Ped had just called and said there was trace amounts of blood in the urine but no red blood cells so most likely just a small irritation but to bring him back in if it kept happening.  Cory did a little googling on what might be causing these colorful diapers and came up with the possibility of being mildly dehydrated and the color is caused by urine crystals.  This made sense to us because of the feeding difficulties and his daycare not really pushing him to eat his bottles as much as we would at home.  We cut out solids for the weekend and I also smelled the bottles because he seemed to be refusing the bottles, not really the milk.  We had just switched dish soap recently to some sort of green apple Dawn which even I thought was strange smelling.  So I think he may not like that smell/taste on his bottles after living with Palmolive since he first started eating.  I re-washed the nipples in Palmolive and the bottles after that and he seems to be drinking his bottles better. Whew. And no more colorful diapers.

One thing Cory said during this last “crisis” is “When is enough enough?”  I am proud we are watching Xander and aware of when things are not quite right, but it seems like I tend to make a big deal out of a little thing that ends up being nothing.  And during that time we worry worry worry and get all worked up and he is just fine.  I don’t know how to really describe it.  We’ve been almost trained to react to little things because in the NICU they could mean something big.  But now that he is older is that same theory still in effect? Until the magical age of 2?

Ok, moving on to some celebrations.  It has been over a week now since Xander has started rolling all across the floor.  My heart leaps for joy every time I see him roll onto his tummy when for so long he would immediately roll to his back if he was on his tummy.  It is still a little struggle trying to figure out how to place his arms but he is determined and can pull it out of under his body eventually if it is stuck.  Other milestones have not made me feel like I have about this.  I am so proud of our little man, and it seems he’s come so far in just a couple of months.  He has also been sitting up on his own for probably 3 weeks or so.

Yesterday was another exciting development, if you’ve had a preemie who was on a ventilator they probably warned you that it could cause speech delays and oral aversions etc.  Since Xander is pretty quiet I have been worried about speech delays, he does babble some but wasn’t doing the bababababa, mamamama type stuff until yesterday!  He has been doing this soft popping noise with his mouth with the same motion as if he was saying mamama, and when I picked him up from daycare she said he had been doing that but then turned it into babababa!  When I told Cory later he said, “oh yeah he was doing that this morning, I meant to tell you”. Lol.

He is also doing great with solids. At daycare yesterday he ate the whole level 1 container of green beans  along with 3-4 tbsp of oatmeal. Crazy kid.  We don’t give him that much at home, otherwise he won’t eat his bottle, but maybe we’ve figured out the dish soap problem.  ECSE also said I could try puffs.  He can pick them up with his hand but not his thumb and index finger and can’t get them to his mouth and only tried to eat one once.  I have put a few smaller pieces in his mouth and get some really funny faces about the texture and the dry/hardness of it all.  I like trying them to work on his fine motor skills in picking up small things.

I don't like the puffs mom.

I don’t like the puffs mom.

Yeah I can sit up, so what?

Yeah I can sit up, so what?

I like to sit in the big people chair.

I like to sit in the big people chair.


One thought on “2-5-13 Update – Crisis and Celebrations

  1. Hooray for all those milestones! Wow – what an exciting week! I’m also glad the strange diapers turned out to be nothing. I agree that time in the NICU conditions you to be waaay more observant than “typical” parents. Nothing wrong with that AT ALL! 🙂

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