Getting closer

Baby Drew had his x-ray Thursday to test how much his esophagus has grown. He only needs to grow one vertebrae length to be where he needs to be. The Dr. is planning to schedule surgery for the middle of April, then approximately two weeks recovery, depending on if everything goes good and he passes the requirments to leave the hospital. There is an end in sight. Yeah!!!
Drew does have some redness on his stomach around the feeding tube, and they are worried he might have an infection. He is on some new antibiotics to help clear the infection, hopefully! They drew some blood and they are watching it for culture. We should know in a few days what it is.
Drew is very handsome, the nurses took a vote and said he is the cutiest baby in the NICU. All the nurses have to stop and look and his big eyes everytime they walk by. His eyes are changing color they are looking more hazel now. He loves to suck on his pacifier quite a bit. We're hoping it will help with his eating later down the road.

Tyler had a touch of the flu this week and spent a lot of time cuddling with Mom, which is uncommon for Ty. It is rare to see him not so busy. By the weekend he was back to himself and into everything and openning doors to go outside and play. Tyler is going to go home with Dad for a week to spend more time with him and let Mom spend more time with Drew. We all need a change.

Ryan and I celebrated our anniversary this weekend and got to spend a night up Ogden canyon in a cabin. It felt good to get away. Even though it was short, it was nice!

An in minor parent news, Melissa slammed her finger in the car door today. She thought she broke it, it hurt so bad, but she thinks it's ok now. Just two nice cuts in the top and some throbbing now.

Halfway through March

Baby Drew is doing well. Sorry it's been a while since I updated. Last Monday (3/9) he had a CT scan to check for any fluid in his chest. It looked really good, and there were no remaining pockets of fluid. Thursday the surgeon had an x-ray taken while he stuck a dialator down Drew's throat to measure the growth of the 'pouch'. It didn't show much growth, but I'm not really accepting it. It wasn't a great x-ray. This week they want to do the same thing again while putting dye into his stomach. This will accomplish two things. First, we will find out if there is still an opening where the milk got into Drew's chest before. Hopefully it will be closed this time. (It's been three weeks since they did this the dye test last). Also the upper and lower portions of his esophagus will be highlighted in the x-ray, so they'll know better how much distance is really between the two.
Otherwise we're still thinking growing thoughts. Drew hasn't been putting on weight the last week or so. They increased calories again yesterday, so hopefully tonight he will have gained.
Tyler is doing great. He's been very busy, as usual. He fell off the bed, and his face hit the nightstand on the way to the floor, so he had a pretty nice black eye. It's still healing, but looking much better. He also has the last of his teeth coming in, so he's had lots of drool. He's had a runny nose too, but I am not sure if that's because of teeth or a cold.
Last weekend Tyler and I went home for a night. It was so nice to be home, even for a little bit. I loved seeing my friends. I was even happy for the funny smell of my apartment, just because that's home.
The good news is that we're getting closer everyday. We're each doing well overall, and we are making it little by little.

What a Great Weekend

We had a new adventure yesterday and took Tyler to the zoo for the first time. Grandpa Steve and Grandma "Shell" were up for the weekend, as well as Ryan. We took Tyler to the hospital so that he wouldn't have to be left behind while we visited Drew. Because you can only have two people at the bedside at a time, Tyler could be with us at the hospital at least. There is a playroom at the hospital for patients and siblings, and Tyler really enjoyed playing there.
We also learned from visiting the playroom that we have free zoo passes for life because of Drew's time in the hospital. So we took advantage of them.
Tyler really liked seeing the monkey's and elephants. We had a good time pointing the animals out, and before long Tyler would say "Whasat?" It was really fun to have an outing with Tyler.

Drew was wide awake when we arrived yesterday to visit!! He has been keeping the night nurses busy this week and crying from about two until after seven AM. Then when I get there he's been sleeping like a rock. But he's decided to change that routine, I guess, and was up looking around for more than an hour. Today (Sunday) he only slept for a half an hour of the three hours Ryan and I were there!! And after two weeks we got to hold him again. We haven't been holding him because he still has the chest tube, which can be very painful. He's did pretty well, and didn't seem bothered by us moving him.
He started getting feedings again last night. They are putting food in through a new tube that goes through his stomach into his small intestine. IV fluids are very hard on the liver and the intestines stop working if they aren't used, so this is better for him overall. Plus he won't feel hungry all the time. We learned that hunger is actually triggered by hormones as well as the stomach, so having food in his intestines will trigger hormones to help him not feel hungry.
He's up to 7 lbs 10 oz now!! In another week they will repeat the dye test to check if the esophagus has healed and closed again, and if it has they will remove the chest tube. And in about three weeks, if all goes well, he will be ready for his repair. Hooray!! The days go by quickly, but I am so looking forward to taking my little boys home and being together. I've never wanted a family picture so badly. I can't wait to sit on the couch with Ryan holding one kiddo and me the other. I will take all the sleepless nights coming with more gratitude than I ever could have imagined.
Although it's been a long road, I know the Lord is aware of us and looking after us. Thank you again for all of your support and prayers.

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.