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+ 0 - 0 | § Waiting until Tuesday

Alex has been making a bit more secretions in his throught (sp?) lately, which normal people would cough up, but with the respirator, he can't. Apprently having the respirator there actually causes him to have additional secretions anyway, just because it's there. That just means that that they have to keep up on suctioning it out for him. Other than that, not much has changed in the last couple days. This is really good. We're mostly waiting until Tuesday, when he goes in for his surgery to have the shunt put in. I'm both scared and optimistic about the outcome.

Kari and I saw a good movie last night, "Big Fish". I really enjoyed it, but I think Kari and I are a bit overly emotional right now, so perhaps we got a bit more emotionally involved than we normally might. It was good to sit back and have some time to ourselves and relax at home for a short while.

+ 0 - 0 | § A day of rest and cats...

It's official...I've been told to stay in bed today.  We were out of the house most of yesterday visiting Alex and running some minor errands.  About 10 minutes after we left the house, I got a nasty headache, that continued pretty much throughout the day.  At about 8PM, as we were leaving the hospital, we stopped by my previous home on the maternity wing to see if they could make sure that I wasn't dying, and the doc there told me that I probably had a tension headache from not getting enough rest.  So, here I am...kitty by my side as I type the latest update in our life's saga.

Dan wrote a pretty long update yesterday that contains just about all of the info that we have to this point.  Alex is going to have his first heart surgery on Tuesday...something that both Dan and I are pretty nervous about.  If all goes well, though, he'll be feeling much better, and may even be able to breathe on his own for a while.  The doctors decided to do the temporary fix (the shunt) mainly because it will allow the docs to get his esophagus attached and start to get him eating on his own.  That way, he can grow and make the next heart surgery easier on his body.  Dan also mentioned our first parenting opportunity, which was fantastic.  I never thought I'd be celebrating something as simple as changing his diaper...and it was amazing to watch Dan, who was ecstatic just to be able to wash Alex's face.  It brings tears to my eyes just thinking about it.

Anyway, there isn't much more to say...I hope everyone on the outside is doing well.  As Dan said, we read every single one of the comments and emails we receive, and appreciate every one of them.  Thanks to everyone for your support!!

+ 0 - 0 | § Updated schedule and other bits

It looks like he's scheduled for surgery on tuesday morning. They have decide to put in the shunt. The purpose of this is to provide another route for blood to take to go to the lungs. Once the shunt is in place, the PGE will be stopped, which will allow the ductus to close. (Kari descibes this much better in her post before this. The post is titled the whole download I think). He's the second surgery in the morning, which means that he will be going in about 10-11am. They say that the surgery will last about 2-3 hours. This surgery has me worried quite a bit more than the last one, as it will involve working on the heart. We'll meet with the heart surgeon on monday or tuesday, and he'll walk us through what's going to happen. Hopefully, once this surgery is done, and he recovers, they'll be able to take him off the respirator. There is no guarantee that they'll be able to do that soon, but I'm optimistic about it.

As this post is kinda long, just click on "more" below to see the rest.

(more)

+ 0 - 0 | § Visiting our little family...

We've been getting a bunch of requests to visit us and Alex lately, and we think that it's wonderful that we have such a support base.  However, There are a few things that we need to share with everyone.  First, all visitors must be accompanied by either Dan or I.  This is one of the NICU rules, so I apologize if this is inconvenient for anyone.  Second, only two people are allowed by his bed at a time, so if you do visit, we can only cycle one person in at a time other than one of us.  Third, the NICU closes for rounds from 9AM - 12PM.  With these three things, and what is likely to be a busy time for Alex, all visits will have to be coordinated with Dan and I.  If you just want to visit us, you are welcome to do so.  We have room for guests at the house...just don't expect me to be up and around as a hostess for a few weeks.  My belly hurts a bit right now.  If you would like to visit our little family in one way or another, then just email us at kariell@netconex.com and we'll try to arrange something.

Just two more things...if you do decide to visit, we would appreciate it if you stay as positive and upbeat as possible.  We are very aware of Alex's condition, and but we both believe that with positive thinking and energy, he (and we) will be just fine.  Also, please understand if we can't answer all of your questions regarding future plans.  These plans seem to change daily and aren't always apparent to us right away.  We'll continue to use the blog to post most of the information, so that everyone gets the same message.

Thanks!!

+ 0 - 0 | § The surgery went well

Alex is out of surgery, and sleeping soundly in the NICU. The last time we saw him, he was sedated, and therefore very calm. We talked to the surgeon, and he said that everything went well. Apparently, his type of esophageal problem, where he has only atresia, is quite uncommon. They have had 7 cases in Hershey in the last 14 years or so. Of them, they have been 100% successful in reconnecting the two parts of the esophagus, so this gives us some reason to be optimistic.

It looks like they won't be using the G-tube for at least a week or so, because they don't want to stress the heart any additional amount. After the heart surgery next week, they will might start feeding him through the tube. Until then, it's just intravenus feeding.

+ 0 - 0 | § He's in surgery right now

To put in the gastrointestinal tube. Wish him luck! They say it will take 1  to 1 1/2 hours for the surgery. Don't get worried if I don't put an update soon though. I probably won't get around to that until later this evening.

+ 0 - 0 | § Jailbreak

Well, they're discharging Kari today. That's really good news, as we will be able to sleep in our own bed for the first time in over a month, and Kari will be able to see the cats.

Alex is going into surgery today. We don't know when, but he's on the docket for today. They said we will be able to stay in the room until after the surgery is over, so that is good. Otherwise Kari would have to find a way to sit up all day, which is pretty uncomfortable for her.

+ 0 - 0 | § The download...

So, here is the complete download...so that I don't take up so much room on the front page of the blog, click on "more" below to read the rest.

(more)

+ 0 - 0 | § Ok, now we feel a little bit better

We had a chance to talk to Dr. Palmer, Alex's neonatologist, and he updated us on what the state of things is, more or less. As it turns out, Alex is going to probably go into surgery tomorrow to insert a gastrointestinal tube. We got to talk to Dr. Meier, the surgeon who will be doing the surgery, and he filled us in on some of the details. He's not on the schedule for the OR yet, but they are going to try to get him on. If he doesn't go tomorrow, he'll go on Friday. It looks like heart surgery is probably going to happen next week, but that is not for certain. I suppose we'll learn more this afternoon, when we get a visit from Dr. Myers, the cardiac surgeon. It makes me feel alot better now that I've talked to the two doctors today, and know that the third will be stopping by later. I guess it pays to throw a "congenial fit" every once in a while.

+ 0 - 0 | § Cartwheels

The cartwheels will happen when they make we walk down the hall and I fall, rolling the whole way home!  They may look more like somersaults though.

+ 0 - 0 | § We're rather annoyed right now

Alex is still up in the NICU, and will probably be there for at least a little while. The problem is that we don't really know much else right now. There has been a lack of communication between NICU and us for the last couple of days. It seems that whenever we are up there, the doctors aren't around, or are extremely busy (They had triplets and twins delivered yesterday.) So we don't know too much about the plan, when and what he's getting surgery, or even what medications he's on. We do get to talk to other doctors who aren't specifically his, and they give us innacurate or conflicting information because they are keeping track of all 30+ babies in the NICU. Dr. Palmer, who is the resident who is looking after Alex, is making his rounds right now. We called up, and talked to him just now, and scheduled a meeting at noon, so hopefully, we'll get this mess straightened out soon.

The good news is that they took out Kari's IV this morning. She's been able to get up a walk a little, but it hurts her a bit. Every time she gets up though, it gets a little bit easier. Pretty soon, she'll be doing cartwheels down the hall.

+ 0 - 0 | § Some more details

Alex seems to be comfortable. He's gotten used to the respirator, and he's been doing that cute squeezing your finger with his fingers thing. At one point, he was squeezing Kari's finger with one hand, and my finger with the other. He's got quite the head of hair to him, and the cutest little fingers, and toes, fingernails, and toenails. Not to mention, cute little ears, and nose.  Look at me, acting all silly, like a boastful dad.

Alex had an X-ray taken earlier today (well, I guess it's yesterday now), and they found out that he has esophageal atresia, but no fistula (For details on what this means, you can check the links on the left under esophagael defects). This has the positive effect of being simpler, but unfortunately, the gap of missing esophagus is about 5 cm, which is quite large, considering that he is pretty small to start with. This makes it difficult to join the two pieces. The cardiologist hasn't yet had a chance to take a look at him yet, but will tomorrow morning. Once the cardiac surgeon (who will take care of the heart problems) has a look, and consults with the pediatric surgeon (who will take care of the esophagael problems), they can come up with a plan of attack.  It looks like the esophagael problems will be put on hold for a while, and they will just put in a g-tube, a feeding tube that goes directly into the stomach through the belly. With the g-tube, they can give him milk, or food easier, and it just buys some time until they can get the esophagus fixed. All of these speculations could be completely wrong, but we'll know more about the plan for the heart tomorrow afternoon.

+ 0 - 0 | § And the name is....

...not Horton!

Alexander Michael Norton arrived this morning via C-section at 10:05AM.  He weighed 4 lbs., 14.6 oz, and was 17.75 inches long.  Happy Birthday Alex!  (And to my sister Angie!)  He's stable in the NICU right now, and we'll post more news as we get it.

+ 0 - 0 | § Today's the day

Well, it looks like Kari's going to have a C-section in about an hour. The baby is a little big sluggish this morning, and they don't want to take any risks, so they are going to have a C-section. He's made it to over 35 weeks, so they aren't too worried about his size or lungs, so they figured better safer than sorry.  We're going to be pretty busy, so I wouldn't expect me to update this until things have stabilized a bit more.

Wish us luck!