Half Way!! (we hope)

Tyler has figured out that if you PUSH a chair, you can reach more stuff. He's such a smarty, and so cute. He also likes wearing hats when he finds them.

Cute smile Drewby!!

Drew is doing much better than last week. Just to get the whole story straight, I will probably repeat a little of what I already wrote. Drew has been having spells where his heart-rate and oxygen levels drop for a few weeks now. They thought it was the infection in his blood and revamped the antibiotics that he was on. His labs were improving some, but he was still requiring oxygen. Last Sunday things really turned crazy and he was very sick and requiring more oxygen than ever. (We were not at the hospital to know this was going on.) So they did a chest x-ray and found fluid, but they weren't sure where it was. They followed up with a CAT scan, and talked to the surgeon and decided it was in the pleural space, which is just outside the lung. There was so much fluid that his right lung was not able to work! They had to try 3 times to get the chest tube in the right spot, but finally got it in and drained 12 cc's of fluid immediately. (2 and 1/2 teaspoons of fluid in a little body is a lot.) The radiologist says the chest-tube is IN the lung.  He was also put on a ventilator because he was having such a hard time breathing. They found infection and yeast in the drained fluid, so he was treated for those.

He improved quickly and was able to be off the ventilator Wed and off oxygen completely by Friday.

Turns out that the lower part of his esophagus had opened and leaked his food out of his stomach. They hoped that it would close on it's own, but after a dye test and x-ray yesterday we know that it is not closed and that the fluid also broke down the stitches in his trachea and letting fluid into his lungs too. They've decided to wait another week and dye test again.

On the up side they checked the upper part of his eshophagus, and he's grown half of the distance he needs to in order to repair that!! We're planning on about 4 more weeks until the

final surgery. For now he's doing very well. He will have to have the chest tube in until the esophagus is closed again, which will hopefully happen on it's own this week. The chest tube is painful to have in because it goes in between his ribs. We also can't hold him while it's in. His spells of low vitals have completely stopped now that the fluid is out and the infection is gone, though. He is looking so good!!

The cute little guy has figured out how to manipulate the tube in his mouth now. The nurse told me yesterday that when it stops sucking, he moves it around until it starts again. :) We are so happy that he's doing so well now.

Drew is certainly getting his fair share of obstacles for the start of his life. Saturday when Ryan and I went to see him he looked good. His repogle (tube that sucks out the saliva) kept clogging (which isn't abnormal), but his saliva was a yucky color.
Sunday after church we got a call that the nurses had been concerned because his oxygen was dropping and he was coughing, so they had done a chest x-ray. That was inconclusive, so they wanted permission to do a CAT Scan. In doing that they found fluid in his chest. They thought it was outside the lung, but when they inserted a chest tube they didn't get any fluid out. So they decided it was in the lung and with the help of an ultrasound placed a chest tube in his lung. They got 12 cc's of chocolate colored fluid out immediately. During all this they had also put him on a ventilator, so that he wouldn't have to work so hard to expand his lungs.
They tested the fluid and found that it had infection and yeast growing in it. So now he is on a different anti-biotic, plus two that he had already, and an anti-fungal. He will have both the chest tube and the ventilator until the infection is cleared.
The fluid had come (they think) from a leak in the lower part of his esophagus where it was open from the first surgery. So basically his food was leaking out and somehow got to his lung. We had been told they would do surgery to close it off again, but this morning the nurse said they were going to wait and hope that it would repair itself. Drew has been fed by IV since Sunday and will not start feedings again until the infection is gone.
I hope all of this makes some sense. I am still a little baffled at all of it. Oh, and he also had another blood transfusion Sunday night.
Meanwhile, I got the bug that's been going around and haven't been able to see my little guy since Saturday. I call several times a day to check in and pray for him, but that's about all I can do. We can't hold him until the chest tube is out and he's off the vent anyway, but it's still hard not to see him. Hopefully by Thurs I'll feel healthy enough to go see him again.
On a positive note, Tyler is getting over his cold. And I am so grateful for watchful nurses who know when to investigate problems. If we can just get through all this infection, things should go pretty smoothly afterwards. I just keep thinking healing, growing, positive thoughts for now though.

Drew is doing much better today. His color is much better. (He's pretty fair skinned, so the picture doesn't show that. Compared to Monday though, so much more pink.)
He also was awake while I was there, which hasn't happened for a while. I love seeing those big eyes!!
He's taking is pacifier again as well. I am so grateful for that because with the tube in his mouth he's at risk for getting an oral aversion. If it gets bad enough, kids sometimes don't eat by mouth until they are 2 or 3 years old. He was liking his pacifier the last 2 days though, so I think it might have just been that he wasn't feeling well. He weighs 6 lbs 8 oz now, and is on his way to bolus feedings (eat and then wait instead of the drip) soon. The surgeon wanted them to start that.

Tyler is learning to mimic what we say to him. It's not clear words by any means, but he uses the same tones and similar sounds as we do. "Where is it?" is a common one. He's getting used to the routine that we've worked into the last few weeks. He slept through the night last night too!!! I was so happy when I woke up on my own at 6:30. It's pretty normal for him to wake up between 2 and 4 am these days.
Today he brought grandma Nina's shoes in the room and although it took me a minute to understand, he was saying, "Kitty? kitty?" because he wanted to go outside and find the cat. I love my boys.

I really enjoy reading all the comments too. Thanks for those.

Week 4

Tyler really enjoyed his dad being here this weekend. Ryan was helping my grandma rake up some leaves while the snow was gone, and Tyler was helping in his own way too.
Drew is still working on getting rid of this infection. He looked better for a few days, so they had decreased the number of anti-biotics he was getting, but the infection seems to be building again. He was having more trouble with his heart-rate and o2 level today, so they checked his blood and decided to go back on the anti-biotics they had stopped before. From talking to the nurse tonight, if he is still having as much trouble as he had today they will intubate him again. So we're praying that the anti-biotics will work quickly and he can get rid of the infection all together.
They were planning on checking the upper part of his esophagus today, to see how much it had grown. They may have delayed it because of everything else going on, or because the surgeon was busy. I haven't heard any results, and forgot to ask.
They did change his feedings today so that instead of dripping into a tube and venting back up, it is pumped into his stomach. He will have to toot out any extra gas now. (He can't burp until surgery hooks things up).
We are so grateful for all the prayers on our's and Drew's behalf. I know the Lord is watching over us and we are so blessed by Him. Although this is a huge lesson in patience for me, I know it will all be for our good.

Drew has been having episodes of decreased heart-rate and oxygen levels. They started on Sunday. They only last a few seconds most of the time. We thought that it was just that he needed to be suctioned, but after a blood test yesterday we learned that he has an infection. We just don't know where the infection is. So they've done a urine and blood culture and tried to do a spinal tap yesterday, but they couldn't get any spinal fluid. Today when they checked his blood his red cell count is down. Normally they would leave it, so his body could learn to build the count up on it's own, but where he's already struggling with his oxygen levels they decided to do a blood transfusion this afternoon. He's also on constant oxygen now, because he was getting more episodes where his O2 rate dropped last night. They're going to redo the spinal tap this afternoon. Poor Drew. I am glad to know that there is a cause for the drops in his vital signs, and that they are treating it. He started anti-biotics yesterday. Hopefully things will turn around for him soon. He's been extra sleepy, and was pale yesterday. I am going tonight to see him again.
Tyler, I think, is unaware that he has a brother still. Just knows that we live at grandma's and mom leaves everyday, and dad only comes sometimes. Despite that, he still makes us laugh. Yesterday he got into Aunt Stefany's cereal stash in her room. He spilled cereal on the floor, and then went and got the broom and tried to sweep it up. His favorite toys are still vacuums and brooms, as well as the Swiffer now.
Not too much longer and Ryan will be here with us again. I really look forward to the weekend more than ever now.
Love you all.

Day by day

Well, I'll have to take some more pictures to post. I don't think I have new ones since last week.
Things are going slow, but good here. Drew is getting a little more to eat every few days. He started acting uncomfortable over the weekend, so they've slowed down on the rate of increase. We're up to 13 cc's an hour now. For anyone who likes math: The goal is 150 cc/kg of his body weight in 24 hours. He's up to 6 lbs 5 oz, and I don't remember how that converts to grams. Skip the math: We're at 110 cc's, and the goal is 150 cc's every 24 hours (per kg body weight, if that makes any sense).
Once he gets up to the full amount then they'll start working it into actual feedings instead of the constant drip.
I was there when they changed the dressing for his G-tube today. Amazing. He has an incision about an inch long just above his belly button, which the nurse said is probably how they got the tube in. It's strange to see a rubber tube sticking out of your baby's belly. There are a few stitches holding it in place, but otherwise it's mostly tape and a small bulb on the inside of his stomach. We are careful when we move him to not pull on the tube, needless to say.
Tyler is still himself, just more cuddly. Great-grandma Anderson watches him while I go to the hospital every morning for a few hours. Then we go to Grandma Nina's for the afternoon. I've been trying to let him play outside everyday since it's warmer this week. He likes to follow the cat around and to throw things into grandma's fish pond (just leaves and snow so far). He's quite a charater. Today he hasn't wanted me to change his clothes, so he's stayed in his jammies. Guess we all need a day like that sometimes.
Thank you again to everyone who has helped us though this time. We have so many wonderful friends and family members. There is not a way to say how much we appreciate you all.