Just talked to the hospital. They have weaned Cole down to 40% O2 which is great. His films also came back much much better. This is all good news. The only downside is, he is very alert. I wish they could have kept him knocked out, but apparently that’s not the best for the body as it slows everything down big time. It’s one of those things where if they have to do it, they will, but if they don’t, avoid it at all costs. I guess this is why I’m not a doctor.

Nurse: Doctor his heart rate is dropping, he is in a lot of pain, what do we do?
Me: Knock him out.

Update 8:30 pm: Our little guy is a fighter that is for sure. They have weaned down his O2 to 30% which is incredible. They still have him on the vent because of the peep it provides. As far as I know he’ll be on that vent till weekend’s end. The blood work came back testing positive for 3 different bugs. I’m not sure what Cole has been licking, but it ain’t good. He tested positive for Group B Strep, enterococcus, and klebsiella, all which contributed to pneumonia.

The doctor also came by to check both babies eyes. Paige’s eyes looked wonderful. He’ll be back in two weeks for her. Cole’s eyes were still a little cloudy, but so far they look good. Our nurse was watching Cole like a hawk. She said if his sats drop by one number, the eye exam would be over! Nice! The doctor will be back next week to take another look. We are hoping for an uneventful weekend with Cole.

Today felt totally like deja vu ala January 2006. When I got to the NICU I spoke briefly with Cole’s nurse to get up to speed. Tobie and the doctor came right over and we were pulled aside to talk about Cole. We looked at some x-rays of his chest. It didn’t look good. It was very cloudy. He did have something going on inside before the surgery. But even if we knew the outcome, the staff would have recommended surgery anyways because it was needed. Cole’s sats between yesterday and mid-afternoon today were terrible. I think everyone was a little freaked out about how fragile he is. I’ll I can say is seeing little Cole like this is a lot worse now than it was just 2 months ago. I’ll summarize everything in a list because so much is going on with the little guy.

1. He was put on the jet ventilator. We really have gone full circle now with respiratory assistance. His blood workup was terrible being on the conventional ventilators. His CO2 levels were crazy high. I’m not sure if this will have any long term affects, (everytime you hear high CO2 levels you think brain damage, you know?) . His latest gas (as of 4 pm) looked great. So that’s a positive improvement.

2. He has been given an art line in one arm. This is similar to the PCVC line he had so many moons ago. It will allow them to get an accurate blood pressure reading and draw blood without having to poke him each time.

3. They are going to start administering steroids to Cole again. They are going to give him hydrocortozine. From what we have been told, this is far less potent than the steroids he was once on.

4. We have to wait for the blood work up to come back, but his films lead us to believe he might have pneumonia. We’ll have to wait for the results before crossing that bridge.

5. They have stopped feeding him. Since he isn’t moving O2 very well, the last place to get O2 would be his stomach and intestines. This is a prime spot for bad things to happen. So for the time being he’ll just get some nutrients and lipids via the IV in his scalp.

6. He did test positive for a couple different bugs. They probably started to colonize when the ET tube was put in. We will know exactly which bugs are in him once the cultures finish growing. Currently he is on a broad spectrum antibiotic.

7. They are going to start the diuretics up again. His films show some fluid accumulation in the lungs. His first round were probably be lasics again.

8. They have given him sedatives so he isn’t mentally alert through all this.

9. This is the worst part (I know how could it get any worse?), they have paralyzed him with drugs. If he were to breathe on his own right now, it would be bad for him because he would be going against the jet and he could possibly make himself toxic. So they have given muscle relaxers that basically paralyze him so he will no longer move or, well do anything for that matter.

So what do we do from here? I don’t know. My gut says something bad is coming our way but we are hoping for the best. The staff say different (which of course is always a good thing). They feel pretty confident he will start to improve in a few days now that they have found the settings on the vent that he responds well to. They will slowly try to wean him on his settings (when we were leaving tonight, they had already had weaned him from 100% to 90% O2). Eventually they will take him off the jet and move him to maybe the conventional ventilator or better yet, CPAP. While Paige was only in Gen Pop for 1 day post op, Cole might be there for weeks. They have even taken our crib away and put Paige into a single bed. I hope she’s not alone for too long because the room looks too big without little Cole.

Oh yeah, Paige is doing great (of course I had to post about her!).

Tobie here: I keep thinking “why is this happening?”. I know I’m not supposed to be thinking that, I should be over those feelings by now…but we’re also supposed to be on our road to coming home by now. It seems bizarre to me that about a week ago I was worried about Cole cobedding in Paige’s crib when I bring them home together because she has pink sheets and I’m not too sure he’s a big fan of the color pink. And now I have to worry about him being paralyzed and sedated so he doesn’t realize he is in pain or discomfort from being on the vent and having more tubes and lines in him than he ever has since birth. I was looking at his body laying there back in the isolet thinking that this couldn’t possibly be happening to my adorable little boy who was so playful and unbelievably cute just two days ago. I can’t hold him when he is on the jet ventilator and I can’t touch him because tubes and monitors and IVs are coming out of every hand/foot/head/body part. The nurses tell me to talk to him and try to touch him, but he’s sedated and paralyzed…so how would he know I was there? It pains me to see my beautiful baby boy in this condition so I think this would just be more hurting for me without any benefit to him. I don’t fully understand the game plan for his recovery and no one is committing to any timelines. I understand the non-committal because every baby recovers differently…but for my sanity I need some timeline. I understand the bacterial infection needs to be knocked out, then I think they are going to wake him up slowly. Cole is such a cry-baby, but in a sweet way..I’m going to be sad when he wakes up and realizes the tube is back down his throat. The doctor has pretty much told us that he won’t be coming home anytime soon, especially with this setback. I feel so helpless and sick to my stomach that this is happening.

I am simply amazed by technology. This is coming from someone who makes a living from it. This week I hooked up a color printer I bought a few months ago so I could print some pictures for my mom to take home. Wow, this printer does everything. I can’t believe how easy and quick I can print a 4×6, 5×7, or 8×10 photo quality print (for those who care, I bought the Canon Pixma IP 6600D). Since Tobie got me a Digital Camcorder for the holidays, I’ve been amazed how easy it is to create and edit home movies (Yes Val, more are on the way). Today while waiting for Cole to finish up in the OR, I decided to create a slide show of our brief trip down the yellow brick road that I’ve chronicled with our digital camera. Once again I’m amazed how simple it is to create this level of multimedia. It took me less than 30 minutes to come up with this one (yes I know it shows!). One of the nurses has been playing a little Enya to the kids, so I grabbed her CD, ripped it to the computer and put it to some pictures (please don’t tell the RIAA).

So without further ado, click here to see the slide show (if you just want to download it to your computer, right click on this link and choose Save Target As or if you just click on it, Windows Media Player should just launch and play the file, this is probably your best bet for your optimal viewing pleasure). It’s a pretty big file, so it may take some time to load. If you double click on the movie while it’s playing it should make it full screen.

Cole is having surgery for ROP tonight at 6 PM. He reacted terrible to the eye exam today, having many d-sats. I don’t think he will recover from this surgery as quick as Paige. The doctor said his ROP progressed very quickly and he now has high risk stage 3 with plus disease.

The surgery typically lasts from 1.5 to 2 hours, so they should be done around 8ish.

Tobie here: Wow. I think I scared everyone with my last post. I have been a little on the sad side this past week, I don’t want to downplay my feelings. Some days it just hits you harder than others. But we can’t slow down, we can’t wallow, we just have to keep moving forward and brace for the next blow. I truly believe that Eric and I have enough love to give to the babies that we’ll get through anything. Paige looked better today. She was moved back with Cole late this afternoon. Cole also had a good day. It’s good to see them both together again.

Eric here: This is why I don’t let Tobie post (yes I’m kidding, or am I?). It’s been a dynamic week to say the least. It’s not that it’s crisis time, it’s just everything seemed to be so positive for so long and then it all changes with one diagnosis. It’s not that the babies are in danger, it’s just it opens the door for more what if’s. It’s not that the babies will have disabilities, it’s just that its one more thing to worry about on top of a laundry list of worries. It just feels all too familiar bringing us back to that fateful phone call about Kaylee (wow, haven’t mentioned the K word in a while). Today was a much better day and I think we are back on track (until tomorrow’s eye exam , it was a short ride).

Anyways, it was a good long day at the NICU. After waiting 30 minutes in line at Einstein Bagels to bring substance to the woman, we headed to the NICU (that’s right I step up and brave that dang place on a Sunday morning, give me some props, if you don’t know what I’m talking about, try going to any breakfast place in Scottsdale on a Sunday). Of course we took separate cars because there wasn’t much chance Tobie was leaving before 6:30 pm. When Grandma and I got there we walked right by Paige’s “Gen Pop” area (yes I watch too much ‘Oz’). There was a baby there in one of those open isolets. We got to our room and Tobie was already holding Cole (mom and I were only 5 minutes behind her in the car, she moves quick). Anyways I ask where Paige is and Tobie said she is in the same spot. She was moved to an open isolet and I thought it was a different baby. Kind of funny, well not really.

The babies got lots of love today. That is when they weren’t pooping and peeing. There were a lot of diaper changes today. There was also some shrapnel as Paige exploded and hit Cole. He’s okay, but his cute red outfit needs a couple of cycles through the laundry. Cole also initiated me today by proving the nurse right and peeing on me as I left him open to the world for only a few seconds as I tossed his used diaper away. I have my eye on that one!

Paige is doing much better today. She barely opened her eyes, which is good. The swelling around her eyes has gone down a lot. She’s almost done with all the ointment treatments as well. She should hit 5 pounds today. Cole has also put on some nice weight and is 6 ounces shy of the 5 pound mark. We tried to feed Cole by bottle again. It looked like he took some milk down, but not really. He fell asleep within a few minutes which is kind of funny because one minute he is sucking away making frowning faces and the next he is passed out. He does try, there is no denying that.

We made a nice home made dinner tonight which is the first dinner we have cooked in a long time (of course except for those dinners made by our friends ). The best part was mom was here to clean up. I’m trying to talk her into staying, but she mentioned something about a job, a husband, a life, and a dog in TX. Oh well.