Twilight Baby Days

We are in what I consider the twilight baby days -- Oliver is so close to his first birthday! So much of his baby-ness is transforming into little boy habits. He has always had his own personality, but now it really shines through. He has a presence and an awareness about him. He can do so much, and he seems to have purpose. He's still squishy, but he's not a little baby.

I've been weaning him this week, too. We're working on drinking from a sippy cup, with a bottle sometimes. Breastfeeding was such a great experience -- I'm so glad it worked out. But this is just one more sign that he is growing up.

With Mac, I've felt that every age has been better than the last (although three has been rough). I have to keep that in mind -- as they grow, they only get better.

But even as he grows up, Oli will always be my little baby.

F*cking Ice Cream Man

I know, it's a bit harsh, right? But every time I have Mac under control, he comes along with his stupid truck and it's instant tantrum. Let me contextualize this by saying that approximately 50% of our time is spent in a tantrum, 10% of our time is gearing up for a tantrum, and 20% of our time is spent recovering from a tantrum. So that leaves us a full 20% of peaceful time. And when we hit our state of zen, I don't want it interrupted.

Yesterday, I took the kids to the park. As soon as we pulled up, I saw the truck. There was nowhere to go but out of the car, so I parked as far away as I could and started to get the kids out of the car. But Mac's sugar sensor was on high alert, and she ID'd the truck right away. I cringed as she pointed it out. She was soo cute about it, too. She gets really excited when she hears the truck music. Now let me say that we had already had ice cream with lunch not thirty minutes earlier, so there was no way I was letting her get ice cream. Mean..maybe? But in taking stock of Mac's eating habits, I recently realized that she can log upwards of 2 or even 3 ice cream treats in one day if she spends different parts of the day with different family members. Each of us gives her a treat unaware that the other already did so. As a result, I'm really trying to make sure that her snack intake becomes more reasonable. Two ice creams in less than an hour does not constitute "reasonable."

Of course, this means nothing to Mac. As soon as I said no to the ice cream, the tears started. Don't get me wrong, I felt bad, but I wasn't going to budge on this. So she cried, told me she was mad at me, pointed out the truck a million times as it sat there for a ridiculously long amount of time. But finally the truck left and we were able to concentrate on playing.

Not an hour later that stupid truck came back. Talk about a mental head slap - I silently cursed him and prayed that Mac somehow wouldn't hear him. No such luck. She may not hear me talk when I am two feet away from her, but she could hear the truck from across the park. Seriously, why did he need to come back so soon. I take it personally, like they are trying to trap parents into buying treats by creating mass hysteria among all of the children. They figure that nobody can say no. Well, I can!

MRI Results

So it was basically what I expected. The MRI showed that he has enlarged ventricles, but he is acting okay, so we are in a grey area as far as shunting is concerned. The neurologist called last week to let me know that there was no apparent reason for the seizure-like activity, which has pretty much stopped by now. It's still a relief that there is nothing abnormal showing up. However, the doctor did tell me that the film showed "moderate to severe" enlargement of the ventricles, with a rounding shape that is indicative of spina bifida. This isn't too surprising, since he has always had some swelling. They just didn't feel that it was enough to shunt him. The real tell would be if this MRI showed a significant difference from the MRI taken when he was born.

I called CHOP and they basically told me that they treat kids, not x-rays, and that if Oliver seems fine, then there probably is no reason to shunt him. They explained that just because the ventricles are enlarged, there isn't necessarily pressure. And pressure on the brain is what causes a problem. Their reasoning is that if he had pressure on the brain, there would be tell signs such as extreme lethargy or excitability, regression in his abilities, or vomiting. While he isn't doing any of this, I have heard of cases where babies who were shunted without any of these tell signs experienced dramatic improvements after receiving a shunt. Sort of like they were doing okay, but did so much better once they received the shunt. All of this said, I do feel like Oliver is doing really well -- making a lot of progress, really responsive, etc. So I sent the film to CHOP on Saturday for Monday delivery.

I called today to follow up. The first time I spoke to them they said that while the ventricles were enlarged, they saw no reason to change the course of treatment. However, they must not have really looked, because they called back an hour later to say that upon looking at them further, there is some change between the first MRI (taken when he was born) and the most recent. What does this mean? That I should put my radar up. While I appreciate the fact that I should just be more attentive to his signs than usual, I feel like I'm on double secret probation. It's like telling me not just to worry, but to really worry. But not to do anything, either. They did move my appointment up from the end of August to the first week. And on their recommendation, I'm seeing a pediatric opthamologist tomorrow. Pressure on the optic nerve is another sign of swelling, so we'll see what this doctor has to say.

So no huge surprises, but definitely an uncomfortable grey space. I just hope my little man is okay.

We Love Nurses

There are lots of things that I love, love, love, and today nurses are at the top of my list. I've actually loved nurses since the day I gave birth to Mackensie -- the labor and delivery nurses were so comforting, and I was amazed that a stranger could be that kind and willing to so completely care for me (anyone who has given birth, and maybe some who haven't, knows what kind of yuck is involved in that, and nurses clean it up and hold your hand through all of it). Since we've had Oliver, actually since his diagnosis in-utero, we have had a chance to interact with many, many nurses. Without exception, they have all been so great. After each extended interaction, I'm so grateful and just want to give them a hug. We actually did give the NICU nurses a basket of chocolate and snacks, although they deserved so much more. But today was Oliver's MRI, so it was back to the hospital. We didn't go all the way to CHOP, but stayed local instead. The nurses were, as usual, great. They were super careful inserting his IV, which anesthesiologists have not been able to do so well in the past (because he is so "well-fed"). They collapsed one vein, but considering what a pudge he is, that isn't so bad. They let me ride down to radiology on the stretcher with him so that I could hold him, and sat patiently with me watching his vital signs when the MRI was done. Our nurse explained that if they saw anything of concern, they would likely call today. And very fortunately, I haven't gotten a call so far. I do know that this doctor keeps late hours, as he has called me at 8 on a Friday evening in the past, but I'm hoping we're in the clear. And by in the clear I'm hoping for no abnormalities that could contribute to seizures (actually, no abnormalities at all) and no need for a shunt. Although I don't think this doctor would evaluate him in terms of hydrocephalus, but I'm sending the films to CHOP for their opinion, as well.  

So today I'm thankful for a successful hospital visit, no complications with anesthesia, no phone call yet, and, of course, nurses.