Today the doctors confirmed that Rowan's surgery will be tomorrow morning at 10:00am. If everything is successful and they get everything back in, they will put an IV directly to his heart and will attach the stroma to his side for everything to drain out of. Then once he has recovered, we will be able to take him home!!! Mommy and Daddy will be with Rowan before they take him into surgery, and will sit in the waiting room until he comes out. We will still be having a fast for Rowan on Sunday. We will post an update once he is out of surgery. :)

(We tried posting this yesterday but blogspot stopped working right when Mommy pushed "post", so here it is a day late)

We got some great news today! Not only was Rowan wide awake for at least three hours, which both Mommy and Daddy were able to enjoy (though not together sadly) but the surgeon basically confirmed to Daddy that the surgery would go forward on Friday! She said the swelling has gone down considerably, and she's pretty positive she can get everything back in now. She told Daddy she couldn't do it right then since Rowan was awake and needed to be under anesthesia. We are both extremely excited! If they are successful, we will be much closer to bringing sweet Rowan home! It's about time too, since Rowan now weighs 8 pounds 7 ounces and needs to get a bit of exercise! He's got a nice fatty neck and even his arms are a bit puffy. The nurse said part of that weight is caused by having the ventilator, so as soon as he is off of that, he will lose a lot of that weight. Again, we are having a fast for Rowan this Sunday, for all those who might like to participate. We appreciate all the prayers and concern, Rowan is doing so great because of all the support!

Some video from Daddy's visit with Rowan today. Mommy caught him wide awake so Daddy rushed over to play with him as well.

Mommy just had her morning visit with Rowan. To her surprise he was awake! Only one eye was open, but that was good enough. He was looking all around, moving his arms and legs, which was great to see. His surgeon's partner, Dr. Fiore, was there this morning. He said the swelling is going down nicely, and that Dr. Kogut, Rowan's actual surgeon, is hoping to do the surgery on Friday. He said it wasn't for sure, but that is the tentative plan. We really hope this will be the case, as then we'll finally know Rowan will be home with us soon! He said one part of the bowel is a different color then the rest, but it isn't dead, so he isn't too concerned about it. He also said they had been seeing some particles in the bowel, but he believes it is just left over from when he was inside Mommy. Daddy also got to visit him late last night after working and had a great visit with him. He told Mommy the details, but she was half asleep and doesn't quite remember what he said.

Here's Daddy's visit with Rowan from yesterday. He tried getting him on camera opening his eyes, but again, he's a tricky little guy and doesn't like to show his skills on camera.

More video from today.

Here is Rowan today. Mommy was again trying to catch him making faces, but he always stops moving as soon as she turns on the camera. He's a tricky little guy.

This is some video of Rowan two days ago. He seemed like he was alternating between smiling and frowning, just working out those muscles, so Mommy was trying to get it on camera.

Here is an update for today -

Rowan has been kicking back these past couple days. The doctors want to leave him alone for a while in order to let him recoup from all his previous surgeries. He has been doing very good, each day he gets better and better. He is back to breathing normal air but they are going to keep him on the respirator just in case.

Tranylle is back at work now just waiting for her baby to come home. She is working long hours because she goes to the hospital every 4 hours to pump and see Rowan. It works out nice because she is so close to the hospital from work. Today she was able to see the surgeon there checking on Rowan. The surgeon was very happy with Rowan and how far he's come. She said his intestines are looking much better and the anemia and swelling have gone down. She didn't say, but Tranylle feels like they might look at doing another surgery attempt on him this week.

Also Rowan is turning into a FATTY! His neck is so huge now that it looks like his head is just plopped right onto his shoulders! They have been feeding him lipids and such in his IV's and that combined with the lack of movement on his part have turned him into a little blob. It's fun looking at his early pictures and comparing them to recent ones. So different all in just 1 week! The nurses are looking into getting a physical therapist maybe later on this week to come in and work with him to make sure his limbs stay moving and he stays in good physical health.

Mommy had a hard time last night being at home without her little boy. We are doing our best to get back to normal life and work till we get to bring him home. In the meantime we still try and see him as much as possible.

Thanks for all the prayers and love. We are going to have fast for Rowan this coming Fast Sunday (July 3rd) for all who would like to take part.

Well we are home from the hospital. It is kind of bitter sweet. Nice to be home, but not away from Rowan. We called the NICU at 3am last night to see how he was doing, and they said he had been doing really well so far. They were able to turn the oxygen down to 25% (normal is 21% and had been up to 100% earlier that day) and his jitters had completely stopped, which is a relief. We slept in a bit since we haven't really had any undisturbed sleep the past week (though Mom had to get up every 3 hours to pump still) so it was nice getting a full nights sleep. We just went to see Rowan, and he was still sleeping and doing well. His oxygen was at 27%, but they said it would be fluctuating over the next few days. He looked very peaceful and as handsome as ever. One of the male nurses there thinks that Rowan looks like Dad from the nose down, and Mom from the eyes up. We aren't quite as sure, but time will tell. We found out last night before we were discharged that Mom is still allowed to use their pumps, so we are going to take advantage of that while he is still at the hospital. We will be going back throughout the day to check on him, but he is as strong as ever and is recovering well. The surgeon has still said we'll be playing it by ear, and letting him tell us when he is ready for his next big surgery. We always knew he would be in charge! :) As always, thank you for all your thoughts and prayers. It's great to have such a large family praying for Rowan.

Just in case you haven't read the updates on the videos, Rowan has had a hard day, recouperating from big surgeries the day before, a failed 'pick' line in the early am hours, a new 'pick' line in his head and a blood transfusion has really had a hard toll on his little body. But his spirit fights on! He is doing very good at fighting all the odds and trying to regain composure of his tiny infant body and organs. All the stress has caused his nervous system to react funny and that has given him the jitters for some reason. You can see what it is like in his videos.

Somehow he has also POOPED! The nurse can't figure out how he did it as rectum is only attached to his intestines that are up in the silo and not his stomach. So that is a good sign... at least mom and dad think so.

His breathing had finally come back to near normal. We breathe around 20% oxygen and he is now around a 25-30%. Much better than the 100% they had to have him at earlier. The surgeon also had a look at him and said that his bowls are starting to look much better today in the silo than they did yesterday so that was a good sign as well.

Luckily this post has been mostly all good news. It was a relief for all of us after such a hard couple days and really hard past 24hours.

Mommy has to leave the hospital tonight, but will still be at his bedside in the NICU pretty much all day. Doctors just wont let her be a patient any longer. This just means lots of driving to and from the hospital and naps in waiting rooms/lounges/and foyers.

Thanks for all the continuing support and prayers! We believe that is what is making all the difference for out little man.

This video here is a few hours later after his blood transfusion. He is doing much better and almost back to normal breathing. The twitching has gone down quite a bit but he still is a little jittery as you can see. But the nurses and doctors are all amazed at how well an quick he is fighting to be self sustaining again. They also mentioned that you can already tell that he is going to have a mellow and easy-going personality and only cries when something REALLY hurts. Such a tough guy!

This is just a continuation of the previous video. He's a fighter. You can see him twitching a lot still..

After his latest mini-surgery, his body is fighting to stay normal. They were finally able to get a 'pick' line in him, though this time it was in his head. He lost lots of blood and will be getting a blood transfusion soon. The machines are working hard at keeping him well till his body and handle it himself. Due to all the constant pricking, prodding, and surgeries his body has developed a twitch that you can see in this video. Sorry about the poor quality, we can't disturb him so this video was taken through the glass..

Wednesday was a rough day for everyone here. Mom and Dad spent most of the day trying to comfort one another but with little success. Instead of helping to douse the others pain and sorrow we seem to fuel it.

Since his last surgery he has been pretty much cold out of it and his body is struggling to keep up with all the hardships of surgery and his condition. The doctors expected a lot of struggle in his little body from this but he has surpassed their exceptions in some areas, and has fallen short in others. It is so hard to seem him struggle as these are some very critical times.

The doctors are doing all they can to save his gut that is out because once it is gone, its done. These organs play such a vital role in each of us that it would detrimental to lose them. So we pray heavily for him and his doctors.

They had us sign some release forms around 1am last night so they can place a 'pick' line in him that will take place of the IV's. These pick lines last much longer (weeks) as compared to the IV's he has that have to be moved and changed often (hours). These IV's are also a major cause of much of his struggle so it is important that they figure something out until they are able to put a more permanent IV in his chest/heart area that he will use to live off of for a few months.

Sadly the doctors tried their best but couldn't get the pick line in and work properly, so he has to stay on IV's. The trauma from trying to get the line in as well as from the previous surgeries have left Rowan in a very difficult state. The nurses and doctors don't want anyone around him for most all of the day if not longer. That means mom and dad too. They want him to have as much a chance as possible to pull out of this.

The nurse also mentioned to us that his circulation has not been what they had wished for. His core is staying warm with blood flow but his extremeties are cold signifying that blood is not flowing properly. Mike asked if that means that blood is still filling up in his intestines inside the silo and not exiting. The nurse (being LDS as well and having grown close to us and Rowan) nodded her head but said that there are some things they just can't tell us.

So all in all it has been a hard time for us but we are trying to look on the up side with all hope and faith.

As for mommy - she has been healing well with some pain only when the med's begin to wear off lol. So they try and stay ahead of the pain and keep dosing her up. Not only is she having to deal with the pain from her surgery but she has also been pumping to save all the milk she can for Rowan when he is finally able to eat. But this too has lead to much pain for her. Luckly for her it has gotten better with time and so has her supply! Daddy had to make a quick trip to the store even to get some larger support for Momma's HUGE D-licious milk makers. She's having a love hate relationship with them at the moment.

As for Daddy - He is just trying to hang in there and keep everyone up to date. He has been in the hospital with everyone day and night sleeping on the futon. It is over 100 degrees outside but he walks around in the hospital in long pj's and a jacket because of the cold temp Mommy keeps the room at (55 degrees - as cold as the AC goes!). Plus all the hand washing to get into the NICU every 30 minutes with freezing cold water doesn't help either.

This has been a humbling time for us as we know there is no amount of money that can save him nor is there anything we can physically do. It is up to Heavenly Father is all.

Just before our little man went into his second big surgery.

Another Surgery

Rowan went in for another surgery. Tranylle called me about 30 minutes after I left the hospital to go home and do some laundry and such and told me that the surgeon had just stopped by. The surgeon has been checking in on him frequently and has not been liking the change in color of Rowan's bowls (intestines) that are out and wanted to do immediate surgery later in the day when she could make some time.

About 4 hours later they called us over to NICU to follow them down to the operating room and sign some releases for anesthesia, then whisped him away. They had us wait in the waiting room of the NICU just in case they needed an immediate blood donation from one of us and just to know where we were so they can come talk to us after all was done.

Within about an hour and half the surgeon came and told us how it went. Her original goal was to get all of the bowl completely back inside of him and get him all ready to come home. Sadly, his bowl was so swollen that she wasn't able to get any more in at all. She thinks that the blood vessels (his life-line at the moment) that are keeping the intestines alive were getting squished inside the 'silo' due to the awkward shape of the inflamed intestines. They were allowing blood to enter, but it looked as if blood was not able to leave the bowl and thus the deep red and purple color that the doctor was seeing. So being the skilled doctor she is, she was able to create a make-shift 'silo' that now sits flat horizontally against his body (the same way your arm would if you had it in a sling in front of you) instead of how it was in a rod shape right above him (as if a giant rod was poking straight through his middle). She thinks this will alleviate the pressure on the blood vessels there so they can function correctly. We are all praying that she is right.

From this point the surgeon told us that she can really only play it by ear. We will just have to keep a close watch on him to see when she will be able to go back in and work on it. The sooner the better.

Thank you everyone who has been praying for us, Rowan, and all his Doctors and Nurses! Please continue to do so, he has a long road ahead and we feel that he has already been helped greatly from above. Thank you all

Rowan's Status

Just wanted to update everyone on our little man's surgery status. In Rowan's first surgery they checked to see what condition all his intestines were in and were going to try and place them all back inside his body if all was good. After all was said and done, the Surgeon came to our room and told us how it went. She explained that they found that his intestines were not connected to his stomach so everything that he was taking in was just filling up in his gut and staying there because there was no exit. This made it very swollen and the intestines very small since they were not being used. Also, from being inside the aminotic fluid they are matted together so the geometry of the situation made so that they couldn't get it all back in. So, instead they put his intestines in his silo to get them to come apart and go back in on their own (with a little bit of help from the doctors). So over the past two days he has been in the NICU being kept on morphine so he doesn't feel any pain and gets plenty of rest. The nurses tell us that about half of the intestines have gone back in already, so he should be ready for surgery on Thursday or Friday of this week. They will then put the rest back in, and will put out one intestine that isn't connected to the stomach. It is called a stroma. This section is very swollen, so they do not want to connect it to the rest until it is the same size, otherwise it will cause complications. Once Rowan has recovered from that surgery, we will be able to take him home. He will still be on an IV, but it will be going straight into his heart, and we will be taught how to care for it. We will also help to change the bags over the stroma, where everything will be draining from. They told us he'll even be able to wear real clothes! They'll have to be a bit big on him and be button up, but that is better than nothing! We will have him at home for 2-3 months before he will come back for his final surgery to connect the stroma to his stomach. Then our baby boy will be home for good!

He's been doing wonderfully so far. He's a strong boy and has done so well with the surgery and dealing with all of the tubes. He can hear/tell when we are with him, as he always starts to stir and try to open his eyes to get a good look at his Mommy and Daddy. So when they are trying to let him rest, we will whisper so we don't disturb him. We had a great visit with him last night around midnight, where he was awake the whole time, looking at us and trying to move around. It was great to see him awake and doing so well. We both love him so much! Thank you to everyone for your prayers and concern for our handsome little man. We know it helps and that Heavenly Father is watching over him. :)

This is a short clip during one of those periods every 4 hours where they do all their work on him, and decided to give him a different view of the room. You can see all of his beautiful hair. We weren't sure that he was even going to have hair as Tranylle was bald at birth and Mike was very blonde with dark eyebrows. To our surprise he has a nice head of dark hair and light eyebrows!

This video is much longer. The doctors/nurses try to only work on him every 4 hours (12am/pm, 4am/pm, 8am/pm) so Rowan can get as much undisturbed rest as possible. So we try and make it for those times as well, plus we get to take part of his care giving. Makes us feel like parents. Anyways he was surprisingly awake and alert for us, it was very nice to visit and be with him. They also let daddy take his temperature and change his diaper since mommy already was able to.
They also took the IV's out of his left hand so he is now able to move his fingers around at will and hold it up to his face and mouth. He is also able to hold our fingers!! He's a strong little man! Definitely a Simmons boy :)

This is his temporary home in the NICU. This short video just shows how the top goes down to lock him in so the heat doesn't escape. While no one is working on him this is how it normally is. The hospital provides a standard blanket to cover everything with but we brought in a blanket that a sister from our ward made for him to give him and his area a little flare and piece of home.

The last of mommy's first visit. He knew she was leaving and tried to cry but the air tubes down his throat go right between his vocal cords so nothing would come out. His face would cringe and his little tongue would stiffen and curl up, but no sound comes out. It was very sad for both mommy and daddy to see him like this.

A continuation of mommy's first visit. Rowan got the hiccups and was semi alert! (He is usually fast asleep with all the drugs thy have him on) But he heard Momma's voice and just had to see her :)

After 8 hours mommy finally got to see her son!

Right after He came out, just before Mommy got to see him.

Mommy's first sight

This is all the time Mommy was able to see her baby. So sad. They made her wait 8 hours till she was finally able to go see him in the NICU again. She couldn't sleep or do anything during the wait. It was really heartbreaking for everyone :(