Tuesday, June 30, 2009

Wow, what a day!

Being parents is hard work...being parents of twins is often (in the infant stage anyway) double the work, and being parents of sick twins is...well, you get my drift!!

The boys haven't been sleeping or eating well since they feel pretty icky. None of us slept too great on Sunday night, so we were already going into the day rather exhausted.
Caleb and Luke and I made it to St. Johns hospital yesterday morning in time for Luke's head ultrasound. That went ok, although he cried through most of it. It involves nothing more than a head massage with an ultra sound tool, but he wasn't too happy. He probably just wanted to be back home in bed like the rest of us!

We came home and I fed both of the boys. Luke took 7 oz by mouth and a jar of baby food. Woo-hoo!! The most he's eaten in three days. I was really excited about this!! Since Luke hasn't been feeling great, we've been putting his feedings through the g-tube in his stomach (we don't use it normally, but it's pretty convenient for a baby that's not eating, has a fever and is getting more and more dehydrated. I found myself wishing Caleb had one too!) However, feeding through the tube didn't turn out to be as easy as we remember it being a few months ago. I'm not sure if it's the volume or what, but every time we tried to feed him this way, we sat him up to burp him and he threw up the entire feed! Ugh. Very frustrating! Anyway, you can see why I was thrilled he ate so much and all by mouth!

Next, we headed to pediatric neurology to hear the results of the ultrasound. THANKFULLY, Andrew was able to take a couple of hours off of work. Sitting in a waiting room with two feverish, cranky 9 month olds is not an easy task for one person. And we still had two appointments to go.
So, the ultrasound shows that the ventricles in Luke's brain look pretty much the same size they've always been. They don't want to do anymore imaging studies at this time. The plan now is that we'll go back in three months and they'll just measure his head, check for any other symptoms and then go from there. Luke's fontanel (aka, soft spot) is slightly bulging. They are a little concerned about this because it could signal increased fluid on the brain. They've instructed us to watch him closely... specifically for things like larger head size, extreme fussiness, vomiting, vision problems, etc. Right now there is no need for a shunt to be placed. The doc told us of a situation they just had with another set of twins. One twin was shunted, the other one had some fluid on the brain, but nothing major. Then, all of a sudden at 10 months, things got worse and they had to put a shunt in her also. Basically, what they are saying is, "We're not out of the woods yet, so watch carefully because Luke may end up needing one also." For those of you who have been with us on this journey, you'll remember the HUGE miracle that happened on the day of Luke scheduled shunt surgery. My faith was a little shaken yesterday because I just realize how fragile things are and how quickly they can change. But deep down, I know God is taking care of it. I'm really trusting for this fluid in Luke's ventricles to go down and for a shunt to never be necessary.
At the same time, we want whatever is best for Luke. Certainly increased fluid on the brain can cause developmental delays as well as other complications, so if the fluid isn't going to reabsorb on its own and starts to cause him some major issues, then a shunt would be the better option. Just pray for us to have the wisdom we need to see the warning signs of increase fluid, to push for more imaging studies if that's what needs to happen and to just make the right decisions for Luke. In some ways, I really want an MRI done. The risk of course is the radiation exposure. The benefits are that we would know for sure what things look like in Luke's brain. He's outgrown the head ultrasound (safer option) phase since his head will begin fusing together soon. So, an MRI would be the other option for imaging studies. Thanks for praying....I'll keep you posted on how things look in these regards.

GREAT NEWS....the boys are not terribly sick. Caleb's left ear looks a tiny bit pink, so the doc went ahead and prescribed antibiotics for an ear infection. He also has a croup cough. Poor litte guy sounds awful...and is beginning to sound like nothing at all. I've never known a baby to lose its voice, but he is. It's adorable and sad all at the same time. But boys' lungs sounded great (YAY!! preeemies are very much predisposed to lung/respiratory infections). They have come into some sort of viral respiratory issue. So we just have to wait that out and pray it doesn't turn into anything worse, like pneumonia. Luke isn't on antibiotics. He still has a slight fever this morning and the poor little guy has broken out in a rash. The doc thinks hives...eczema. You can tell it itches something terrible and all we can use is Hydrocortizone cream, which only brings so much relief.

Thanks, as always, for your continued prayers. I'm so amazed by God's constant, day in and day out, faithfulness to us. Our God is so good.

Oh...their weights ..I almost forgot. Caleb is now 19 lbs 10 oz and Luke is 17 lbs 8 oz. The most exciting thing about this I think is to see how much Luke is gaining on Caleb. At one point, they were nearly 4 lbs apart. YAY for weight gain!



2 comments:

  1. Kristi, I love the updates on the boys! I'll keep you all in my prayers and so glad to hear that your boys are doing well.

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  2. Kristi, Thanks so much for keeping us updated on the boys. We will continue to pray for you all but especially for Luke. God has already done such amazing things in his life.
    Deanne

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