Well, we made it 3 1/2 weeks until we had to come back to the hospital, and the frustrating part is that it's not even Rowan's fault that we are here. Last Friday a nurse came to take a blood test. She took the blood and then went to flush the broviac line. Instead of slowly pushing the fluid through like you are supposed to, she just shoved it through the line! Rowan just started screaming, and she said something like yeah that doesn't really feel good does it? Of course not! If you do it correctly he doesn't feel it at all! So then he starts bleeding from the site where the line goes into the leg. The nurse then says we'll need to go to the hospital and isn't it lucky she was here when this happened... Rowan had surgery on Saturday and the broviac has now been placed in his chest, which is the last spot it can be put. While he was in surgery, Dr. Kogut also reopened his incision and cut out two tiny pieces of his intestine that weren't functioning well. Last Thursday we had been at the hospital doing what is called an Upper GI with a Small Bowel Follow Through, which basically means they put some dye in his stomach and take pictures of it going through the intestines to see if there are any issues, and with that Dr. Kogut found a sluggish area and decided to take it out while she had him in surgery. So we are now up to six surgeries and six blood transfusions. Rowan was taken off the ventilator yesterday and while at first he struggled he is now doing really well. He didn't get quite as puffy as he did in the last surgery. On the bright side, he has had brown poop three times! He has never done that before so this is a great accomplishment! We are very excited about this progress, and I hope it means we will be able to start giving him larger amounts of milk soon. Rowan just turned three months old on the 19th, and unfortunately he missed it because he was still sedated and sleeping. But overall he is doing really well and hopefully we will have him home soon!

We have been home for two while weeks now! It's a record! Things have been going pretty well. Only minimal doctors appointments so we can mostly live a normal life! Rowan will normally sleep through the night, though he does have an off night every once in a while where he cries most of the night. But we were able to take him to church for the first time last sunday and he did great! He slept most of the time and didn't get too fussy when he woke up. We stayed for the first two hours. He's only being allowed to have 5ml of milk every day, but at least it's a start. His intestines are slowly working, and since they aren't up to par yet he throws up sometimes from the back up in his stomach. He is a pretty happy baby though and likes going to new places, so we go on lots of walks and family visits.

We're home!!! :)

Rowan and mommy are planning an escape! He's got his get away outfit on and is ready to go! More seriously, we see hoping to leave soon. The surgeon realized there is no reason for us to be here since we are just waiting for him to poop. So they are going to do a test today to make sure everything is flowing through the intestines and then they'll start prepping for us to leave. Thank goodness. We are getting more and more frustrated being here. They let all of mommy's milk, including all of the colostrum, thaw so they threw it all away. They leave needles in rowan's bed, and do not pay attention to their orders or pass instructions on to the new nurse so nothing gets done correctly. The only times they come in here are to wake him up and get his vitals, and they do it so often that by the time we finally calm him down and get him back asleep they are back to do something else annoying. So hopefully we will be leaving in the next day or two or i might really repel out the window with Rowan.  We will post how the test his and when we get home.

They are trying something new today called venting the tube. As you can see in the picture his g tube now has a big syringe on it that is hung up on a pole by some gauze. This will make so that anything coming out of the g tube will go back in and travel through his intestines instead. Then he will hopefully have some bowel movements. So he will go on and off of this every two hours so they don't overwork his body. If this works he will be able to start eating. Rowan seems to be starting to feel hungrier now, because he has started to cry out randomly. Otherwise he is very happy and smiley while awake. He and mommy have been having fun, going on walks in his wagon through the hallways of the hospital, and playing with his toys. Yesterday Rowan turned two months old!

Rowan has been having a fun day! He's been smiling a ton which he's never really done before so he's feeling much happier! We are just waiting for his intestines to start functioning so we can try singer milk and see how his body handles it. So it's just a waiting game now.

He looks more and more like himself each day!

Rowan is off the ventilator! He took it like a champ and only cried a little. But most of his tubes are out now and he's been moved to a big boy bed. :)

Mommy left for a few hours and came back to a much puffier baby! It's normal for him to get very swollen, but it was crazy to see the transformation!

After five grueling hours of surgery Rowan us all put together! He looks great and has quite the unique belly button! They are keeping him heavily sedated so he didn't move much and can get plenty of sleep. He has tons of iv's in him again and is on the ventilator, but that should come out tomorrow. He will be strictly on iv's for about a week and then we can start feeding him milk again, but it will be a slow process. He will start pooping pretty soon though so that will be exciting! His surgeon did an amazing job on such a tough case. His intestines had lots of scarring and were in pieces but she got it all fixed up and he barely lost any of his intestine. She said he will be perfectly normal in the end. Mommy and daddy are very relieved. Thank you for your thoughts and prayers. Rowan is doing wonderfully!

Some of you have heard already, but we once again ended up in the er this weekend. early saturday morning rowan started gagging on his bottle and binky and eventually refused to eat altogether. He then started throwing up. we were really concerned because that was not like him at all. He loves his milk, so we knew something wasn't right. So we called the surgeons office and spoke to her partner, dr. fiore. He called dr. kogut and they discussed the issue and thought maybe there was some blockage in his intestine and said to take him to the er and that they'd inform them we were coming. So once there they did a test where they have him drink something and them take pictures so they can follow it's progress. I was able to convince him to drink some, and once it got to the stomach it stopped. They waited an hour and only a tiny amount was making any progress. So we discovered that his stoma is now completely out of his body and it is pulling some ligaments so tight that anything he takes in orally can't get through so he eventually throws it up. dr. kogut said that this has forced get hand and we will now have to do the surgery much sooner. She was hoping we could make it another two weeks, but we have all realized we won't make it that far. We see waiting to take him back to the hospital until I have had a chance to speak directly to dr. kogut to see what her plan is and when she thinks the surgery well happen. Rowan is in a lot of pain so we'd like to get him some medication but being in the pediatric unit is worse then being a3 home since the nurses wake him up every hour. He has a hard enough time sleeping without crying out in pain so we want to wait as long as possible to take him there. We appreciate all your prayers for him, and will let you know how the surgery goes.
Tranylle

Rowan is coming back home today!! He's been doing really well, and just has a few tests this morning and can go home once they are done. He silk has a blood clot so we will be giving him the blood thinner shots for a few months at home. He is also anemic do they are adding iron to his tpn. But otherwise he's been nice and happy and sleeping much better since his infection is gone. Mommy and daddy are really excited to finally get him back home!