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!



Sunday, June 28, 2009

Monday

The next three Mondays will be important for us. Tomorrow Luke goes for his head ultrasound. The doctors are checking on the ventricles in Luke's brain to see if they are enlarged any more than they were back in March. We used to have to check this every other week, then once a month....and now just once every three months. We'll have the ultrasound in the morning at the hospital and then head over to the pediatric neurosurgery office to go over results and discuss whether or not a shunt would be necessary at this point. We've been praying for a long time now that the ventricles would not enlarge anymore...I'm really hoping to hear that they've actually decreased in size. The danger of enlarged ventricles is simply that the extra fluid in the brain is causing pressure on the brain tissue itself and that, of course, is not good.

The following Monday, July 6th, Luke and Caleb both will be heading to the doctor to get their nine months shots. That's never a fun day for anyone. I think it's worse as they get older. Since Andrew can't take off work that day, so my friend, Drusie, is coming with me. Thank goodness!! One mommy plus two screaming babies doesn't work out too well. It'll be great to have her help.

Finally, Monday, July 13th Luke goes in for an EEG to check on any seizure activity. Luke's has been on anti-seizure meds since October. We don't really think he's had any for a very long time, but they've kept him on meds as a precaution. The EEG is interesting. It has to done when the baby is "sleep-deprived" (apparently, sleep deprivation triggers seizures, so if you're going to have one, that's when it might occur). So, on July 13th we'll have to wake Luke up at 4 am and try to keep him awake until his 8 am EEG appointment. Now there's a Monday morning for ya! Wow...not looking forward to that. I AM looking forward to getting Luke off of his anti-seizure meds. As long as everything looks normal, we can start weaning him off. At that point, Luke won't be on any medications!!

Thanks for your prayers in the next few weeks. In addition to our two appointments tomorrow for Luke, I'm also going to have to take both boys to see their pediatrician. They have both been running fevers this weekend and don't seem to be feeling too well. It's so sad to have sick babies. Of course, we're familiar with this feeling, but since they've been discharged, neither of the boys have been sick AT ALL!! So we were getting used to healthy, happy babies. It's been hard to see them feeling so icky the last couple of days. We're praying for quick recoveries! My sister was able to visit this weekend from St. Louis. It was so great to have Aunt Kari here to help snuggle the little guys. Hopefully next time she comes, Luke and Caleb will be back to their healthy, spunky selves!


Friday, June 12, 2009

Big Day!

Well, today is a milestone in our home. Luke has officially been home as many days as he was in the hospital!! Today is his 130th day at home. I know it might seem strange to count the days like we do, but somehow going through an experience like this makes you appreciate every- s-i-n-g-l-e- day.

Things are going really well in the Lundgren household!  We just enjoyed a great visit with my parents.  Dad was here two weeks and mom stayed about four weeks.  The highlight of their time here with us was traveling to Pennsylvania to visit my mom's family.  We recently bought a 2007 Toyota Sienna mini van and decided to put it to the test and make our first road trip as family.  The six of us loaded up and ventured out on the 17 hour journey. Of course, with two little ones, you have to stop A LOT so all in all, it took us more than a day to get there. Luke and Caleb are amazing travelers!! They did so great!!  (That's good to know, considering they'll probably be doing a lot of traveling in their lifetimes.) Anyway, we really, really enjoyed time with my extended family.  With so many Italians in one room, you're bound to have a lot of fun! 

I wanted to give a quick update on little Luke today.  I blogged about a month or so ago about several things we are praying really hard for these days. One of those areas of concern is Luke's eyes.    We were told back in February that Luke's right optical nerve was about 60% the size of what it should be.  The doctor didn't have any hope that it would grow to a normal size, but told us the small size may or may not affect Luke's vision. Andrew and I have been really concerned about Luke's eyes since about 4 days after we brought him home. Those of you who have been able to interact with him in person will know what I'm talking about. He struggles to focus, track, interact with those around him.  Well, we went back to the eye doctor on May 13th.  The doctor told us that BOTH of Luke's eyes have normal-sized optical nerves!  He admitted that on his report he stated otherwise back in February and couldn't really give us an explanation, but "somehow" (in quotes, because we know it's God hand on Luke!) things are normal now. Luke does suffer from a condition called nystagmus. This causes his eyes to be very jittery, making it hard to focus. There is no treatment for nystagmus, but it does often improve, although the doctor could give us no guarantees of that of course.  Another concern is that both of Luke's eyes have some crossing going on. The doctor considers him a good candidate for surgery to correct the crossing.  This would be outpatient surgery and would be done after Luke is one year old. Overall, the eye doctor is quite hopeful that Luke will have pretty decent vision, but as with most everything in Luke's little body it's a "wait and see" situation.
All we know, is that each day, his eyes seem to be better....better in the sense that he can focus better, hold his gaze longer, track better, etc.  We really thank God for this and thank YOU for praying!

I'll post more info later about upcoming Dr. appointments for Luke and other things that are going on with him. He's a sweet little guy....smiling and laughing and making our home a really happy place!  I'm uploading a short little video of Luke.  Again, for those of you who have spent some time with him, you know how awesome it is that he's actually looking in my direction and watching my hand, etc.  Just wanted to show you how much he has improved! Thank God!!