Just shaking his mints..

You expect me to drink this coffee cold??? And where is my newspaper??

Well.. I guess the water bottle won...

Bro's

OH MY GOSH>> what are you doing to me MOTHER?

I will gladly play with the yogurt but don't even THINK about putting it in my mouth..

Ok Dad, if this pic ends up on facebook you're in big trouble!

A little Christmas carol torture by Daddy...

The Dink is doing well! He is up to 25 pounds and down to 16 hours on tpn per day.. that gives him 8 hours of freedom from tubes! He has been in and out of the hospital due to line infections but we are home now and praying we stay home for Christmas.. He still doesn't eat or drink anything but we keep trying.. He is close to crawling and into everything he can get to.. He loves to sit with a basket full of toys next to him and dig through it.. so cute! We moved him to a twin bed with rails to give us a bit more room for his tpn and feeding tube bags... seems to be working out really well! It helps that he can watch his tv and his beloved channel "Babyfirst tv".. he LOVES that channel and it is very educational so we love it too! He understands the word NO and has a funny reaction to it.. he starts off sad about it then goes into ANGRY mode... haha.. he gets very mad at US when he gets told NO... it's hilarious to watch really.

His labs have all been coming back with good results.. sometimes he will have some elevated levels but nothing to be too alarmed about. We still have a nursing shortage.. it's very difficult to manage but we are doing the best we can.. We have a night nurse a couple nights a week but no day nurse so we are relying on Grandma when she is in town to help out... I try to work 2 days a week but it's almost impossible with no one to watch Lincoln.. we really need a dependable RN for a few days a week but no luck finding anyone yet.

We are looking forward to Christmas and seeing the boys with all their new toys and presents... we will be sure to post pics soon :).

Merry Christmas from the Rossman's!

Fighting Infections

Lincoln has been in the hospital for the majority of the summer due to infections and was admitted again today. He was in all last week for yet another central line infection.. the cultures were negative Thursday so they allowed us to take him home on one IV antibiotic (vanco) but unfortunately this infection popped back up even worse and they have been unsuccessful in killing it. They have been trying everything possible to avoid removing his central line because babies typically only have 4 access sites to use: arm, groin, leg, neck. Once you remove a line from a site you cannot ever use that same site again. That's very scary.. if you ever run out of usable sites you cannot do anything else for the child so obviously they are holding that as total last resort. They performed an echocardiogram today to see if the infection is in his heart but it was negative. They tried to do an MRI on his chest today to see if he has any other usable sites but stopped it because his tonsils are now swollen and they do not have a good enough airway to safely sedate him. Now we have NO idea what their next move will be. They cannot stop this awful sepsis infection and they cannot do an MRI to move to plan B. Once he acquired his first line infection it's just been nonstop.. it seems to have attached itself to his line and is persistent...

He is still totally dependent on TPN and does not eat or drink anything orally.. we give him 10ml's per hour of a special formula for 16 hours a day through his g-tube but he usually spits it all up.. we are still hopeful he will someday grow enough intestine to eat normally. Not looking so promising right now though.. yes we are very frustrated. On a good note, he is still a happy smiley little boy who is progressing with therapy quite well. He has changed so much and is so sweet and funny. We will add pictures soon. He is 22lbs 9oz as of today.

At the moment he is in room 4019 at Children's.. we will update this page and also his facebook page often.. thanks for keeping him in your prayers. His facebook page is http://www.facebook.com/?ref=home#!/pages/Marion-OH/Linky-Dink-Micro-Preemie-Miracle/225220749018?__a=7&ajaxpipe=1

Lincoln, June 2010

Tsk Tsk Tsk, Betty Crocker is such an amateur...

Oh, hello BINK! I've missed you!

Don't let the monkey bib fool you... I'm a badass!

Clapping for himself.. and yes, he deserves it..lol!

I'm a happy boy!!! Just ready for Cole's big baseball game at Morral Park!! I am the fill-in guy in case someone doesn't show.... watch out SPARTANS!!

Just showing my nurse how to 'walk like an Egyptian'!

Big Bro Cole chillin' in the hot tub! And yes, you can count his ribs from here but I swear we feed him! I guess doing all that P90X at his Dad's house is working...lol!

This Babies-R-Us photographer is sooo particular.. "lean back, head to the side, look relaxed' sheesh.. modeling is crazy!

In Daddy's office...

Having a blast.. even though my socks are pulled up to my knees! haha

The Dink.

Well Mommy I'm sick and tired of you always making Indian food and making the whole house smell like curry.. we are from OHIO! How about a pot roast for once? sheesh.

Alright Daddy, give me your phone, I will find a ref for tomorrow's game.. it can't be that hard!

HAHA.. no, this is NOT Nicholas Cage's mugshot, it's Dink's first haircut..LOL

First haircut... thanks Grandma Trudy!

Passed out in the camper... tired of seeing Mommy beat Daddy at Scrabble again!

With his beloved NICU nurses, Kim and Michelle..

I'm not sure where to begin.. so much has happened since the last update. I wasn't sure if the blog was still visited so I kind of let it slack for a couple months but lately have heard from people that they still check it and think of little Linc.. so here we are, updating finally :)! April was a good month.. .Linc had his first haircut.. he did sooo well and was such a big boy! I think it helped that my best friend's mom was the barber "Grandma Trudy".. and Cassy was there to hold him so I could take pics.. he was the little celebrity in the salon.. they had all been following his progress so I think they were happy to meet little Linky Dink finally!

May went by so fast! Lincoln stayed healthy and happy and we kept busy with ballgames and school... we are loving the summer days! We took Lincoln to Ridgedale's graduation ceremony.... and it was HOT in that gym... what we found out later is that Lincoln cannot get overheated, or sweat at any point. He must be kept in air-conditioning or by a fan at all times in the heat. If he sweats it will cause sweat to form under his broviac dressing which can/will cause a central line infection. I guess if you think about it, he has this dressing and port in his chest that covers about 1/3 of his chest area.. It would have to be uncomfortable and I can see how easy it would be for that to sweat.. knowing how dangerous line infections are, we now realize that we cannot take him to those events any longer. Our doctors told us if we are hot and need to drink water, that he is 10x hotter.. that is sad for us since we love the outdoors and the water. Thanks to his broviac central line he cannot ever be in water, get wet, or sweat. That kind of limits our summer activities lol.. but that's no big deal compared to what this little guy has been through.

June is here and has been both good and bad... the good part is Greg has now crossed the line into adminstration! He is now the Assistant Principal/Athletic Director for grades 6-12 at Ridgedale... I am soo happy for him.. he is such a dedicated, hardworking, enthusiastic person.. I know he will do very well in his new position! Go Rockets!!

The bad part of June so far is that Lincoln is back in the hospital.. but hopefully only for one more night... as I was rocking him Sunday evening I thought he felt a little bit warm.. I took his temp and it was 101.3.. I took it again in thirty minutes and it was 102.3.. so I called our team and they said to bring him straight to Children's... this was likely a central line infection again.. so we frantically packed and took off to Children's.. we called ahead but due to the fact that it was a Sunday evening we were forced to go to the ER to get admitted.. well that turned out to be a FREAKING disaster!!! We spent 5 hours in that horrible ER.. all those sneezing, coughing, hacking, crying people.. grrrrrrr... that was not what was supposed to happen.. it was 1:30am before we got to a room in the GI unit finally.. so Linc had NO meds or fluids for the whole 5 hours and was exposed to WHO KNOWS WHAT... I seriously almost freaked out on some people.. I know they were busy but when you have a kid with a fever that has a CENTRAL LINE.. you kinda move on it.. but no... oh well.. over and done with. So, the final result is that he has para-influenza.. and not a line infection.. ! If he has no fever tonight they will let him go home tomorrow...

I would love to post more pics and info but it's late and it's been a long week so off to bed we go... but we will post again soon.. thanks for reading Lincoln's blog.. and thank you all for the thoughts and prayers!

Back in the Hospital Again!

Hanging out in his hospital crib...

Exhausted after a long day of doctors and tests..

Not feeling so well ....

The week started off very badly with the awful Neonatology Clinic but we didn't expect to end up in the hospital! Monday was Lincoln's Clinic visit and GI checkup... we thought he felt a little warm that day but his temp was normal.. Wednesday morning our nurse took his temp and this time it was 103.7! Of course that meant I had to take him straight to Children's. Greg couldn't leave work so I had the scary task of driving him by myself to Columbus. He was sooo hot and covered in sweat, I seriously feared the high temp would cause him to have a seizure or something on the way down but luckily he did not. We finally made it and when they took his temp again it was 104.8. We are not allowed to give Lincoln any type of medicine, such as Tylenol etc.. because of the possible liver damage so they pumped him full of fluids and heavy antibiotics. Eventually they did give him Tylenol which seemed to help. He had a very high heart rate and blood pressure also. The big fear with kids that have central lines, is that they could get a line infection which can be deadly. At one point during our NICU stay, one of the doctors told us that line infections are the biggest cause of death to these babies so we were very worried. They placed him on gentomiacin, vancomyacin and another antibiotic to combat it and luckily, it has worked. The lab results show he does have a central line staph infection (gram positive) but he has responded to the treatment and is much better now. He will need to stay on iv antiobiotics for 10 days but because we are trained with his iv line and have home nursing we may be allowed to bring him home Monday and administer the vanco ourselves through his Broviac. That would be wonderful considering Monday is also his first birthday!! He had the doctors very very worried but once again he bounced back. He has enjoyed getting visits from his favorite NICU nurses while he is here though! We contacted the Easter Bunny and asked him to please visit our home NEXT Sunday so that we can enjoy the holiday with Cole there also.. so for now, Easter is postponed :). We are having cake in his hospital room tomorrow so he can celebrate a little with his nurses and of course we will do it all over again at home Monday... hopefully! Oh, and the BIG birthday party will be in July, on his actual due date... I think he deserves three birthday parties in one year :)! Thank you for all the prayers and messages! We will keep the blog updated on his progress... He is in room T4016.. but hopefully only for a couple more days!

Lincoln's TV debut!

What? You've never seen an 8month old getting ready for a date? Got my Kenneth Cole shirt and jeans on... waiting on my Limo to get here!

I'm a ROCKSTAR.. OH YEAH!

Mommy keeps making me laugh and I'm way too cool for that!

Just waiting on Lindsey and the 10tv team to get here and interview me...

I just hit Daddy in the bad spot and he's trying not to cry... HAHA!

GET THIS CAMERA OUTTA MY FACE! Now I know exactly how Brad Pitt feels!

Yeah, I'm wearing a suit!

Daddy still has an owie! hahahaha

Who can stay mad at this little precious face!

And the finishing touch on my Chicken Parmesan is just a tiiinnny pinch of fresh basil! voila!

Oh Lindsey! I told you NO more questions about who designed my suit!

And after TPAC insurance company dropped me I invited that Obama guy over for some apple juice and cheerios but he is apparently too busy or something?? Whatever Buddy... my votes with the old guy!

OMG Cole! My driving is NOT that bad.. buckle your seatbelt and be quiet!

It's been a long time since we've updated the blog but we've been a little busy :). Lincoln has made great strides since we've been home.. we are so proud of him! He is 17lbs 10oz and 27" long.. he is currently at 10ml/hour of Pregestimil (20 hours per day) and is still fully TPN dependent. He is smiling, cooing, laughing, loves to slap your face or the table or whatever..haha! He moves toys from hand to hand, chews on everything, tries to sit up when you lay him down, has perfect head control, kicks like crazy and loves to bounce in his bounce-bounce as we call it. We think he is doing great..

We did have a very discouraging appointment at Children's yesterday.. we had our first and LAST (by our choice) Neonatology Development checkup.. we met with an unfamiliar Occupational Therapist for half an hour and she performed a Bayley test on him. I had googled enough to know I did not want one done.. they are too subjective and negative.. but we went ahead with it.. NOW I sooo wish I had not allowed it. This stranger determined that he has Global Developmental Delay (the worst case scenario).. they then told us they also think he has worrisome low muscle tone in his legs... oh and they threw in at the end they think he might be cross-eyed! If you are a follower of our blog you probably expect me to tell you I assaulted someone at this point.. BUT I held my composure. I wanted to cry, scream, etc.. but for some reason I was calm... I 'checked out' of the conversation. I let it consume me for the day and I gradually convinced myself that he is NOT that bad.. we knew he was delayed but we were not prepared for such a negative and horrible label to be placed on him. He did everything she asked him or expected him to do in that half hour, except for the following: he did not pick up the tiny stale Cheerio she showed him, he did not respond to us saying his name, he did not grab his feet when on his back, he did not RING the bell, and he did not 'talk' to her. Our explanation is as follows:

#1. WHY would he pick up a boring little cheerio when he doesn't eat, has never seen one, and was still looking for the fun rattle she just took away. #2. He was not listening to us because he was too busy staring at his reflection in her hideous purple eyeglasses ... he is always intrigued by them since Greg and I do not wear them. #3. He grabs his feet alllll the time and even puts his toes in his mouth but was apparently not in the mood to do so on the floor in the closet of a room you had us in. #4. He picked up the bell, looked at the bell, sucked on the bell, put the bell down and was done with...

5. He talks at home.. he coos, he laughs, he squeals... maybe he didn't talk to you because you were not a nice lady!!

We just wonder why they were judging him as a regular 8 month 13 day old baby when he spent his first 8 months on his deathbed, fighting for life on cpap, ventilator, morphine and pinned down to keep his picc line from coming out. He did not get a start on life until around November 2009... but enough of the negativity and ranting.. we feel in our hearts that he is amazing and progressing and improving every single day.. we will not allow one negative random person to change our opinion of our precious son's future... the future may not be as bright and perfect as it could be for him but he will be loved and nurtured and protected.. and he will overcome these labels and obstacles...

On a lighter note, he was on 10tv last week...lol.. we will put the clip on here when we get it.. Lindsey Seavert interviewed us to discuss our views on healthcare reform and how it has and will affect Lincoln... it was a fun experience for sure.. the cameraman, Nate was a great guy and of course we love Lindsey! Greg and I had fun teasing each other about every word and action.. haha. I was like 'Oh NO, like Now what, and Greg put the door up' hahaha... it was a great story.. we just can't help that we are dorks by nature! Now he feels compelled to replay it for every houseguest we have... grrrr!

Basketball season is over for now so we've had some family time to enjoy and it's been fabulous!! We are so excited about the warm weather coming up and spending time as a family... and appreciating every little happy moment and every little smile or laugh from our precious boys... life is good...

Poker Night!

Awwww....... enough said.

Well I've learned if I want to see my Daddy I have to be at Ridgedale.... so here I am in Daddy's office.. He gave me the title of Assistant A.D. so I've already scheduled Spring sports, cleaned up his desk, and had a stern talk with some teenagers about their attitudes.. this isn't so tough after all! haha..

Geez, another meeting? nevermind, this job sucks.. see you at 10pm Daddy! lol

Cole says he is the Poker king!

Really Mom??? Stop taking pictures!!!!!!

Dad, my cards suck, I am NOT calling!

I think you're bluffing....

Did Cole REALLY just bet the big blind?

Wow, Cole, you got lucky this time but NOW it's ON!

HA! Take that Cole! A pair of Aces.. got my poker face on!

Come on, bet already.. I've got a bedtime you know!

Hey, here's a close-up of one of the possums that like to sit on our deck and stare at us through the sliding doors.. now YOU can all have nightmares just like us..lol!!!!!!!!!!!!!

Lincoln has grown so much! He is close to 17lbs! He is cooing and laughing and being such a perfect and adorable little boy! He has his favorite toys... and smiles at them when he sees them.. sooo sweet!

His latest eye exam showed the hemorrhage is slowly improving but not resolved.. we were told to keep taking photos of him daily and if we ever see a photo that shows red-eye in the right eye and not the left, to take him to Children's because this is an emergency.... apparently when you see red eye in photos, it is the reflection of the retina.. if we don't see it in his left eye that means his retina has detached and is emergency surgery... so we have been taking ALOT of photos latelyl..lol..

We are a little discouraged because his feedings are not going well... we pushed him up to 14ml's/hour but he can't tolerate it.. he was refluxing horribly among other issues.. we took him back to Children's for his checkup and also had an upper G.I. Study done... the study was disappointing.. we were hoping to see that his intestines had adapted/grown but that is not the case.. the study showed that what little intestine he still has is very distended and not really functioning as we hoped, yet this is to be expected.. we keep hoping that his intestines will 'grow' as he grows and adapt.. unfortunately that has not happened so far.. but luckily, his liver has bought us time.. he has no liver damage yet.. that's amazing! So, we are at 10ml/hour for 20 hours per day of Pregestimil through his feeding tube and we are to give him nothing by mouth at this time... we are getting physical and occupational therapy at home.. hopefully it helps but he can't eat orally anyway at this time.. his poor intestines are just not capable yet.... maybe someday though! At this point we give him his meds, his feeds, his tpn and we wait... wait for him to grow, and wait and pray for his intestines to grow and adapt. The lucky thing is that his liver and organs are doing ok... which is honestly a miracle at this point.. he is such a strong and special boy... with the most awesome adorable personality!