Lincoln gets an upgrade!!

The crib...

Love the window!!

Mom and Linky Dink!

Sleepy baby...

His nurse Libby played with him all morning so he was just too tired!

Being soooo adorable..

Peek-a-boo!!!!

In the Bouncy Seat.. on vibrate.. he loves it!!

Daddy and Linc... nap time!

Awwww...

WELL!! What the heck was THAT look for??? haha!

In his prison suit... how appropriate!!

Lincoln has been moved again!!! This time he was moved to a nice roomy corner with a big window!! It's great to see the outside finally and have a little light! Having the long window gives us a place to put all Lincoln's toys, cards, and pictures.... it looks like we completely moved in!
Well... about the study... no strictures were found.. but... the contrast they pushed into him came right out immediately... meaning that there does not appear to be time for food to be absorbed... we are just hoping that somehow this corrects itself with time and that he will eventually be able to be fed, at least some amount of food. They decided to start giving him Pedialyte through his g-tube and watch it. If it goes ok they may be able to start small amounts of formula soon. They also finally removed his wound-vac and the wound is healing. He looks and acts great.. we have soo much fun holding and playing with him without the wound vac or drainage tube! His new home is J4 NICU Pod 1 Bed 6.

Lincoln... day 111!

Linc is doing well on day 111! They were not able to do the contrast study on his intestines yesterday because they are waiting on the surgeon to consult first. Hopefully he gets back in town soon... seems like whenever we need him he goes out of town!!! Linc is off all his pain meds and has his last day of Clindamycin (to treat the wound pseudomonas) tomorrow. He is cranky but adorable!! His neighbor was in a little vibrating musical swing/cradle thing today so we are going to look for one for him tomorrow.. seemed to be very calming for the little guy! He kept pulling his nasal cannula out and did just fine without it so we are very hopeful that he can come off all supplemental oxygen this week. The wound vac should also be removed soon... that will help alot! He is still very hungry but if things go well they can start small slow feedings soon.

We were hoping to get the car back friday but unfortunately when they removed the dashboard they found the source of the problem.. a rodents nest!!! It chewed through lots of wires and made the problem much much worse than anticipated so we don't know when we will get it back OR what the final cost will be.. soo frustrating!!! Hopefully it is done Monday!! It is seriously our turn for good news... haha! Maybe good things will happen this week and Linc will get off oxygen and start being fed again.. that would be wonderful!

Videos of Lincoln... Day 111

Team Lincoln... Day 109!

Resting in his crib after a long day...

Still resting... note the wound vac coming out of his stomach.. the gray button with a tube.... yuck!

He was smiling in his sleep but the flash startled him..haha!

Flash got him again!

Lincoln is back on the nasal cannula today!! That is sooo great! He is doing well... we met with his GI doctor today and she told us they are hoping to do a contrast or barium study on his intestines tomorrow to see if there are any leaks, strictures, or fistulas yet. If it goes well they will probably begin very slow small feeds through his g-tube. I hope this happens very soon because he acts sooo hungry and is very irritable. It's so sad and awful... he acts like he is starving and I guess he probably feels that way since TPN does not give them a feeling of being 'full'. It seems to get worse everyday... hopefully feedings will fill him up and he won't be so miserable. He is on Clindamycin for his pseudomonas infection. He gets physical therapy tomorrow so we are hoping to be there and meet his therapist.

As for everything ELSE that has been going on, we pick up the evil Cadillac tomorrow afternoon from the repair shop so we are very happy about that! The skunk smell is still lingering in the house but we are trying to make it go away...haha! The "Team Lincoln" shirts are in the works and we can't wait to get them here and start wearing them in support of our little Lincoln!!

Skunks, Cadillac's, and Elephant Masks!

The "elephant mask' cpap...

So this is the dreaded ugly cpap we were talking about! Pooor baby.. and he hates it!! But.. it is much better for his lungs than the vent was. His wound is not doing all that well.. they actually installed this thing called a 'wound vac' on his wound. Greg calls it a shop vac...haha. It is to suck the liquid out of the wound area... the wound is sooo separated that it looks terrible but this thing should help it. He also has a pseudomonas infection in the wound that they are treating with a new antibiotic. He has been very grumpy and 'ouchy'.. I'm hoping it is due to the very uncomfortable cpap and not actual pain. Our nurses make sure he gets fentynal when he needs it though. He will hopefully be switched to the nasal cannula very soon.

It hasn't been the greatest week for us either.. started out with the evil Cadillac CTS (NEVER buy one.. NEVER!!!) breaking down, leaving us with one working vehicle which happens to be a huge diesel truck. It really sucks to drive that to Columbus every day... and I've decided I cannot park it in the Children's garage.. I have to travel to the roof parking area and take up 2 spaces..haha!!! The cost for fixing the evil cadillac this time is $1000!!!! So, having this shiny red lemon we decided to take it back to the dealer we bought it from last September and they offer to take it back as a trade-in yet we would have to roll over $4000 of negative equity into another vehicle... so I officially hate car dealerships now as well...lol!!! Wow.. and on top of that a skunk decides to spray our entire house making it almost unbearable to stay in.. .even though it was sprayed outside it immediately permeated the inside as well!! Greg and I just have to laugh sometimes at our bad luck... but we realize that none of it really matters as long as little Linc can grow and be happy... Anyone know how to reverse your luck?

July 19, 2009 Lincoln's Due Date

Sleeping on mom 2 days before his last surgery...

Really holding on tight to Dad's candy bar!

Sooo tired!

Pictures from the week before Linc's latest surgery...

Lincoln is doing well! He is off the ventilator and back on the cpap for now.. it's a new 'big boy' version so it looks horrendous!! Like a huge mask that covers his nose and has a helmet type thing on his head... he absolutely hates it and is very grumpy but it is so much better than the ventilator. We are hoping he can go to the nasal cannula in the next week... that would be sooo nice! Too early to tell about the success of the last surgery but we are keeping our fingers crossed! His scar is still not well so they are having the wound specialist look at him tomorrow.. No new infections, except for the wound area so that's a good thing. We got to hold him tonight.. first time since surgery and it was great... as long as he has his binky he is pretty good but without it he will cry.. haha. He finally fell asleep in my arms until his neighbor started screaming.. so he gave her the stop sign, turned totally red and started crying.. it was funny!!! He is back in a crib!! Thank God for awesome loving nurses (seriously!!)!!! So he has all his cool toys back and that makes him happy... today was his 'due date' so he is officially born! Crazy.. but in the words of the Ridgedale HIgh School Business Teacher/Athetic Director: "It IS what it IS"... all you students reading this have heard that one before I'm sure! We can look at Linc in his gorgeous dark eyes and see the little boy he is and will grow into.. he will be just fine.. the road we will take may not be the easiest but we will all be fine and Lincoln will be an example to all of us!

Videos of Lincoln on day 101

Feisty Little Guy!

Lincoln is doing relatively ok. He has a wound dehiscence from surgery. Our understanding is that the swelling from his surgery pushed the stitches out so much that it caused them to pull apart and they had to remove the stitches and stuff the opening with 'angel hair' to absorb all the discharge from it. It looks awful... looks like a long row of hay or something stuffed in there and it has a huge gap... poor baby!! They will keep removing and replacing it to get rid of the discharge.. I don't know.. it's very strange and nasty!!! He also has a ton of dark green 'bilious' stuff coming out of his new g-tube so that is very concerning to the nurses... He is at room air on the vent but the pressure is still very high due to his swelling. We really don't get any information at all when we go in there.. our nurses are great and tell us what they know but other than that we don't hear from any doctors. We asked to speak to our doctor yesterday and she basically told us she couldn't answer our questions about his future.. whether he will ever eat or not.. she just told us options of intestinal transplant etc... which we already knew. They will keep watching and waiting and eventually will study the remaining intestines to see if it would be safe to try to feed or if further surgery will be needed. They won't even attempt that until that green discharge is clear.. who knows how long that will be!!! The good thing is that Linc is very active and responsive even despite being on heavy medication and morphine drip.. so that's encouraging. He grabbed onto his vent tube several times while we were there and tried to pull it out.. he almost did! He is hating the vent and I'm afraid he will succeed in extubating himself soon..haha.. he is very feisty!! It was funny to pry his little fingers off of it so many times tonight.. he wasn't willing to let go!

Little Linc... Day 99!

Puffy Boy... but still adorable!!

The scar... awwwwwww....

Bad photo quality... can't figure out how to turn the flash on on the cell phone camera....

Lincoln is recovering from surgery somewhat ok. He is very swollen and puffy and sedated due to the Morphine drip. His scar looks horrible... it goes almost from side to side on his stomach.. right above his tiny belly button. It is also very red and is oozing so they are watching for infection and started him on a new antibiotic. His vent pressure setting is very high so that is bad.. and the oxygen is 28 (goal is 21). No idea how long he will be on the ventilator.. He did open his eyes while we were there today and was looking around and moving a little. I asked for a printout of the surgical report but apparently no report has been entered. We haven't talked to any doctor about the surgery or what is next.. that is very frustrating. I was going to talk to the doctor on tonight but it happens to be the woman we despise so we decided to wait until tomorrow and try to get our current doctor to talk to us. All we know for sure is that they removed his appendix, ileocecal valve, and all but 25cm of his small intestines. Everything we've researched says you cannot survive with less than 40 cm when you have had the ileocecal valve removed. We don't know if they will put us on the transplant list or not yet. All we can do is wait for his fluids to clear up and do a study on the intestines to see if another surgery will be needed for any repairs or more removal. That will probably be a few weeks. If by chance the study is good they may attempt to start feeding him through his new g-tube but that's a big IF. He is still the cutest little puffy boy and seems to be comfortable.

Surgery results...

Lincoln is out of surgery and tolerated it well. He will be very very sick for a week or so as he recovers. They removed Lincoln's ileocecal valve as well as the majority of his small intestine. He is left with approximately 25 cm of small intestine. The surgery required 3 different sections of bad intestine to be cut and sewn back together. With this runs the high risk of these areas leaking or more fistulas/strictures to form. We don't know much more than that at this time but will keep the blog updated each day. Thanks for all the prayers and messages.

In surgery...

Lincoln just went back for surgery at 9. The surgeons told us it would be 2-3 hours.. we will update the blog as soon as we know anything but right now we have no news.

Friday.... Surgery again!

SERIOUSLY DAD! haha...

The Rossman Family!

Lincoln being adorable in his frog sleeper... thanks Simon and Mallory!

Note the red face and stop signs! Too much love from Daddy!

Lincoln ready to relax...

We met with our surgeon today and got some more information. The surgical plan is to remove the ostomy he has now and also cut out the stricture and fistulas and reconnect everything to the best of their ability. It is unknown how much more intestine Lincoln will lose but the surgeon is hopeful that he will still be able to function well after surgery. It is impossible to predict what they will find tomorrow but it is our only option. Lincoln will be placed back on the ventilator before surgery and will be very very sick after for a while. We know how strong Linc is and we are optimistic that this will be a successful surgery and that he will go on to live a happy life. While they are operating they will install a g-button that will be used to tube feed him until he grows older and stronger.. hopefully someday he can be fed orally but at this time it is very possible that he will be dependent on tpn iv feeds as well as formula fed through his stomach tube. There is a chance that he will be able to someday eat normally and we will do everything we can to make that happen. We will try to update the blog after surgery tomorrow night.

Surgery... again

Lincoln is loving his crib and all his big boy toys!! He really gets interested in watching them move around and change colors.. He had a new eye exam yesterday that showed no progression of the ROP eye disease so he now will only get the exams every other week! That is great news!! Now for the bad news.... the new study on his intestines finally shows a 'stricture' and fistulas in his small intestine. The only way to fix it is to perform another surgery to remove that area of his intestines and sew him back together. The dr. that told us this also explained that unfortunately it is highly likely that another stricture and more fistulas will form as a result of the new surgery and we will be on a "vicious cycle". She also said as he is now he will be dependent on tpn iv feedings for a long time and possibly his entire life due to the large amount of small intestine he lost the first time. The iv feeds will be in addition to the stomach g-tube feedings he will also have to have. There is a slight chance that at some point in his life he may be able to supplement the iv and tube feeds with actual food... so that is what we are holding onto. While they are in the surgery they will go ahead and install the g-button in his stomach that will be used to tube feed him later. We are sooo frustrated and upset! We were told after the first surgery that he would be ok after they reconnected and be able to eat normally... slowly the truth has come out and we now know that is far from reality. We are on the schedule for surgery friday. That means he will also be placed back on the dreaded ventilator. We just pray he won't have to be on it long but we know this is an enormous setback for his breathing and everything else. But, it also will get us one step closer to getting him home someday..... we can deal with tube and iv feedings and we will work very very hard with him to get to the point of actual feedings someday. Because of the surgery Lincoln cannot have visitors beginning friday morning. Lincoln will overcome this new horrible challenge... he is very strong and very very loved by all.

Lincoln is 13 weeks old!!

Lincoln is doing well! He is down to .2 liters on his oxygen (nasal cannula) and that is very very good! He actually does well off the oxygen too but they want to give his lungs time to improve before they remove it completely. They started feeding him again Friday and it seems to be going ok.. not great but ok. We have a new surgeon coming to check him tomorrow and are looking forward to hearing his opinion on how to help Linc. It's great to hold Lincoln whenever we want now that is so much easier without the isolette and ventilator. He spends alot of time in his bouncy seat and loves to watch his mobile and rainforest crib toy.. he gets mesmerized by the colors and moving little creatures.. it's adorable! He has had several good days in a row so we are very happy! His latest brain ultrasound showed improvement so that's another good thing! We have decided to stay at Cardinal Center Campground for another month and are sooo impressed with the owners and the staff there.. they have all been wonderful and Cole LOVES it there!!

Nurse Appreciation Day!

Daddy and Lincoln....

Lincoln is amazing! He was moved to the 'big boy' pod last night. It's a kind-of scary place when you walk in and hear SCREAMING babies and noise!! We are used to the quiet small baby pod! But.. he is becoming a big boy and is ready for the change.. and is adjusting wonderfully! It is harder every day to leave that hospital without him in our arms.. he belongs here with us... but we can't have him yet.. .. I held him for a couple hours with him on his belly.. it was soooo great!! He lifted his head off of me and turned it side to side until he was comfortable.. I was soo excited to see him have the strength and control to do that...he is doing great with his development! He watches his mobile in his crib and will look right at you and stare.. I love it!!! It's hard to believe he has grown so much in the last few weeks.. we are soo proud of him and excited at his future!! Of course, he is off feedings again and we are waiting to see what they come up with but we are very optimistic about his progress! We have the BEST nurses you could ever ask for and for that we are so very thankful!!! Thank you Libby, Kayla, Kim, Sarah, Betsy, Susan, and all the others we are so grateful for! It is so comforting to us to know that Linc is in loving and skilled hands when we cannot be there... you are truly heroes to our little Lincoln!

Big Boy!!

Well, Lincoln is officially a BIG BOY!! He was 4lbs 11oz last night! He was also moved into an open crib AND taken off cpap and placed on the nasal cannula! He is soooo much happier now! We just got a call from our nurse that they had to move him into the bigger nicu room since they needed his space for a new baby and he was a little out of place in the small baby pod! So if any of you want to visit him his new bed number is 2! We brought in his bouncy seat and they plan on using it soon! The feedings were restarted AGAIN on Monday but stopped again last night... same old issue with his digestive system. They were asking the surgeons AGAIN to evaluate him today and we requested Dr. King to also give us his opinion.. that was recommended by one of our FAVORITE nurses!! We met our new doctor for the month and she seems nice... hopefully we can get his problem all figured out finally! We will be 'camping' tomorrow through sunday and then pulling the camper back to Meeker. Lincoln shows more of his adorable little personality every day! We placed a mobile on his crib and he likes it alot! With his slightly demanding personality evolving we learned if we turn off the mobile he gets very angry at us! I think he loves the music! We still haven't had a chance to buy the crib cd player we saw at Babies-R-Us. I should've bought it when I was there but I was determined to buy a Teddy Bear Cd player for his crib but I can't find one anywhere!! We want to play all the baby Einstein type cd's for him.. you know, the 'brain development' is key!!!