Lincoln James Rossman

2010-12-15T08:51:00.005-05:00

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

2010-08-18T18:36:00.003-04:00

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

2010-06-08T23:46:00.010-04:00

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!

2010-04-03T09:39:00.005-04:00

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!

2010-03-29T17:19:00.007-04:00

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!

2010-02-04T21:21:00.006-05:00

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!

Lincoln .. future Ridgedale Rocket

2010-01-16T20:03:00.004-05:00

Ok Daddy, why am I in this waiting room with screaming kids and did I hear someone say Dr. Teich?? NOOOO!!!!!!!!!!
At least he was all cute in his Ridgedale basketball shirt and cool new shoes.. (Thanks Snively Family!!)

Hey Mommy, I think I'm a LITTLE bit more important than that stinky Indian chicken you're burning so drop the spatula and PUSH ME!!!!

He is really unhappy with the hat... but that's no excuse for him trying to flip us off.... what did he REALLY learn in the NICU?? I bet it was his neighbor with the pimp-stick that taught him that!

I guess he's had enough basketball for the day!!

Ohhh what a situation we have here... Linc and Kitty dangerously close...

Uhhh are you people seeing this?? Kiki Sue is in love with my Daddy and it's just wrong!

Yes, he is a cuddler!

At Cole's basketball game (Linc's first ever)... clearly disturbed by the frigid Cardington gym and ridiculously loud buzzers and whistles...lol

Lincoln is doing great! He is at 14 ml/hour of Pregestimil.. which is amazing considering it took us months to get past 3!! He is on TPN for 18 hours a day and Pregestimil pump for 22. He is 16lbs 6oz and growing every week! His lab work is still good... nothing to worry about yet.. which is amazing! We are getting spoiled by having our nurses help out.. now I know why people have nanny's!!!! Our day nurse cleans his room, packs his diaper bag, makes his formula, does therapy, organizes everything, AND tends to Lincoln when we are away.. it's such a relief to have our nurses. I'm able to go to work again, get groceries or do whatever needs to be done and I know he is well taken care of when I'm gone.. we have our day nurse now on Monday and Wednesday from 7a-6pm. We have our night nurse Tue/Thur/Fri from 8pm-7am. We have 56 hours of nursing every week that we must use so we opted to schedule all their hours during the work week so we can have our weekends alone as a family... it's working out very well. Linc's nurses adore him and he feels the same. Linc's in-home physical therapy begins this Tuesday with a guy named Tom... hope it goes well... Linc is doing great with his milestones but needs a little work on strengthening, thanks to his many months flat on his back with fresh wounds!! He has made such progress since he's been home.. we are so proud of him! No worries... he is great and has no signs of any major problems.. we are soo amazed by him every day.. if he's mad at you he will pinch you.. hilarious!! Or if he's frustrated he will throw something.. we love it! If you even begin to say 'peek-a-boo' he laughs.. even when he's mad or tired.. just something about it that gets him every time.. (thanks to Cassy in her hamster voice!) We've learned to make the most of the weekly Children's Hospital appointments.. thanks to the fact that our G.I. team is amazing... they are so funny and genuine... we love Dr. Balint, Patti, and all our nurses etc.. at the clinic.. they are awesome!!! HIs appointments are all-day events for sure but they are necessary and we don't mind... His last eye appt showed the hemorrhage in his left eye gets better every time.. they said it is breaking up nicely and does not affect his vision.. they will see him in 3 weeks to check again but are not concerned at this time.. One issue he is having is that he refuses to take a bottle or anything orally.. so no baby food or juice etc.. this is a common problem with short gut babies that have never relied on being fed orally.. but we are hoping we will finally get some occupational therapy soon to help him overcome this... it's discouraging but we will get through it like everything else. We are still adjusting to the medication schedules and daily rituals but we get better every day....

Oh, and we have to add that we made a 'fan' page for Lincoln on Facebook.. as a joke at first but before we could delete it he already had like 18 fans.. so we went with it.. lol.. we add videos and updates a little quicker but less detailed on there... if you are on facebook it is "Linky Dink, Micro-preemie miracle' ... we tried to shorten it to just Linky Dink but it wouldn't let us... We will keep updating the blog.. we enjoy it and it helps us keep a journal of his precious little life... thanks for visiting and thinking of our little guy...

Chubby Linc!

2010-01-05T21:14:00.013-05:00

With his g-tube between his toes...haha...

Exhausted from beating Lebron again at P.I.G.!!

Ready to watch the Buckeyes play! Linc had his game face on but Daddy was still laughing at the Bigfoot beef jerky commercial!

It's a beard of babyfood peaches...

Oh yeah, toy?? I'm getting pretty tired of hearing you say 'blue... Lion..roaaaarrrrrrrr!'

Where do I start with this photo...hmmm... well we just realized Cole had never actually held Lincoln so we put him on his lap...all cute and smiley.. and just as I'm going to get the camera I hear Lincoln have a BIG POOPY!! Hahahaa.. Cole was MORTIFIED... and I will quote him here "GET HIM.. MOMMMM GET HIMMMM I'M SERIOUS...THIS ISN'T FUNNY' I took a few pics after cracking up first but laughed for hours.. poor Cole! Again, NICE PARENTING MOM!

Cole and Kiki Sue! She's 105 years old and still kicking! And I'm sure you can tell by her facial expression that she is NOT a big fan of Cole!! HERE KITTY KITTY KITTY! I think here she is really wishing for her claws back!

Thank ya, Thank ya very much! He and Cole are obsessed with Elvis.. good impression Dink!

I just had to include this pic of our house after Greg decorated it... he made the 'R' on the front and Cole loved it! Oh, and then he proudly took this picture! Love him....

Oh yeah?? So Lebron is saying he wants a RE-MATCH? Bring it on!

Cole, go get your NERF gun, I'm gonna shoot me some annoying HUGE mice! Hurry!

Haha Cole.. still looking for your new Nintendo DSi? Hmmm.... it's definitely NOT under my blankie... try the litterbox.. just a thought!

Lincoln is doing well... He loves being home... he is sooo much fun.. and he is also sooo spoiled! Haha, no really. He needs constant attention, but we are more than happy to give it to him. Big brother Cole is such a huge help.. he can always get Linc to smile and laugh..and of course, Linc cracks Cole up with his funny sounds and behavior... he's a funny little guy! His appointment today was good.. eye exam showed the hemorrhage starting to break up, which is good, and it isn't affecting his vision. His gastro weekly checkup showed good blood work and weight gain.. we are increasing his g-tube feeds to 13ml/hour and tpn is staying as is, with an additive of Pepcid to the tpn. Everything else is great! He was 16lb 3oz today... He loves watching the big tv but he gets upset when commercials interupt his favorite shows.. soo funny! Spoiled from his little crib flatscreen that only played movies with no irritating commercials (which we of course have installed in his new crib too)! He also loves his new Leapfrog Bear from Aunt Terra, Uncle Austin, and Isabel.. it says his name and is adorable! He got soo many great toys for Christmas.. it's fun to bring new ones out to play with him.. School is back in session which means Cole and Greg are busy busy busy! But we are adjusting to life with the little man home and all his meds and routine and it's really not that bad.. it's all worth it.. and it's really no big deal when you get used to it.. I know it's probably alarming to people that have never dealt with these issues.. I know I would think it would be so horrible and impossible to deal with the medications, injections, pumps, tubes, needles, etc.. if it wasn't us in this situation.. but you adjust and it becomes your new normal... and we are happy. We are looking forward to the day that he can be free of all these things but until then we take one day at a time and are enjoying every minute of it!

Santa Dink!

2009-12-25T20:01:00.007-05:00

HO HO HO!!

I think he's telling us this will the be the LAST Santa Suit picture of the day... hence, the annoyed face!

All snuggled into his carseat!

Just out of the J4 NICU doors... making a run for it before they find a new reason to keep him!

It looks like Daddy is saying... "HAHAHA SEEEE YA Children's Hospital!"

Uh-Oh putting the baby into the notorious 'Christine', the little red evil Cadillac... she handled it rather well though!

Last photo of mom, dad, and Linc at his bedside...

Sarah, Kim, and the Dink!

Lincoln with part of the Linky Dink Official Fan Club... He hates these publicity stunts but it's all part of his contract!

Lincoln is adjusting to life at home... and doing great!!! We have made great progress in administering his TPN, g-tube feeds and meds.... it's become routine and not nearly as terrifying as the first few days... We don't even need our instructions anymore.. haha... People keep asking us what all we have to do for him with all his lines etc... so here is a quick rundown: We give him Prevacid and Immodium 3 times a day.. this requires us to cut each tablet in half and crush and dissolve in sterile water, then to draw it up into a syringe and insert it into his g-tube followed by a sterile water flush... by noon we have to prepare his formula which requires us to boil water, cool, pour into a special blender, add Pregestimil powder and 12 ml's of liquid pectin, once we blend it we pour 2, 12 ml bottles and pour the rest into a g-tube feeding bag, prime it so that no air is left in the bag or the lines. At 3 pm we disonnect his tpn which is fairly simple, we clamp the line, ensure everything is sterile, wipe it with alcohol pads, flush with a syringe of saline, then flush again with heparin. At 7 pm we disconnect his g-tube feeds for his 2 hours of freedom. That one is no big deal... just clamp and disconnect the tube and clear out the settings on the pump. At 9pm is TPN hookup time.. this one is very time consuming and important. Everything must be kept completely sterile and precise. First you take the 2 vials of Infuvite 'vitamins' and use 2 needle syringes to withdraw the contents carefully then inject them into the TPN bag being sure to not puncture the sides, that is step 1 of 5... etc. etc. etc. let's just say it is a lengthy process but we are getting faster at it everyday.. we have to be sure that everything stays perfectly, completely sterile because if any germs, bacteria, or particles get anywhere near the Broviac line it will cause a central line infection.. that would be horrible.. to quote one of our surgeons .. "these short gut babies usually die from central line infections before their livers give out" sooooo, as you can see we are very very careful.... Don't worry... we are following all the rules and we have the best team of short gut doctors and professionals in the world.. Linc will get through this!

He had his first appointment at Children's last Tuesday.. we were really worried that they would find a reason to 'keep' him but that didn't happen.. actually he gained an entire pound in 7 days.. that is awesome!! It also gave them reason to lower his TPN rate to just 18 hours a day instead of 20.. that gives us 6 hours with just one pump to deal with instead of 2!! Great news.. and he is doing perfectly well with everything else... we were sooo happy! I must say with all it took to get him to Columbus and back I realize it's impossible to do alone... luckily Greg could take a sick day and go with us.. I don't know how I will do those things alone... with 2 pumps and lines, a medical bag, a diaper bag etc... but I'm sure it will all get easier with time.

We've also learned that with all Lincoln's complex medical care, that he is a 2 person full time job ...haha.. but we love it.. I am just lucky that Greg is off these 2 weeks to help out.. after that I don't know what I will do!!! I told him he can never be more than 15 minutes away from us in case of an emergency... there are some things that are impossible to do alone... As for myself going back to work.. it's pretty much impossible.. YES we need the income but on the other hand, Lincoln needs me much more and there is no such thing as a babysitter/RN so that is something we will have to figure out soon... It will all work out.. it always does... all we can say is that he is such a perfect and adorable baby... we cannot believe how he has turned out.. it's truly amazing.. the smiles he gives and that little deep laugh he has... our hearts melt... and he can get a serious attitude too!! We have a night nurse for 4 nights a week and a day nurse for 3.. that is helping out alot too.

Christmas was fun.... Cole got everything he wanted and had a blast.. Lincoln had fun with all the commotion.... and he is loving watching the snow fall! Next appt is Wednesday at Children's.. and the next week he has 3 separate appointments there... grrrr... that sucks... 3 day trips to Children's in the middle of winter!!!

We are just elated to have the little man home and really get to hang out with him... he's soo funny and animated... it's really hard to believe all he's been through.. he is a perfect and happy little boy!

Lincoln is Finally Home!

2009-12-16T19:44:00.007-05:00

Happiest Daddy in the world!!

Happiest Mommy in the world!!

Happiest Baby in the World!!

First ride in the car, going home finally!! Such a perplexed facial expression!

First moment outside.. he felt the light breeze and did NOT know what to think of it!

Whoa! It's bright and is there a fan on??

Watching Dad try to figure out how to put the carseat into the base correctly!

In the hallway of Children's waiting to go outside for the first time ever!!

Awww.... Nurse Miss Kim giving Lincoln some goodbye Love... he will miss her soooo much!!!

Daddy holding Linc for the last time in the NICU.. goodbye J4 NICU Bed 6...

Just trying out his new hat and mittens while he was sound asleep... very cute and very very funny!!

Awww soooo tired!

Lincoln is HOME!!!!!! The Medicaid waiver went through and he was released! The discharge was happy but also kinda sad... we've spent 8.5 months there and have become very attached to the staff and our awesome nurses.. we will miss them all soo much. I know Linc already misses his special nurses and friends.... but we know we will keep in touch. Bed 6 in the J4 unit will never be the same again... Our nurses made us such a beautiful and touching scrapbook with notes from all his favorite nurses and other hospital staff that he's come to know so well these last 8.5 months.... someday he can read those words and know how much he meant to them and how special he is. Well, this is making me sad so I will move on... haha:

Discharge day was very very hectic but ended soo well! After all the nurses were done at our house we were able to spend a few hours all alone with the Dink.. it was wonderful!!! Daddy showed him his room, the Christmas trees, the windows, Kitty Sue, and his new toys! Mommy rocked him to sleep and he slept from 10pm til 2:30am in his new crib.. what a big boy!! He went back to sleep after getting his binky and slept til 6am.... we brought him into bed with us at 6 which was awesome.. well, that's after Greg stubbed his toe on Linc's IV pole as he was pushing it into the bedroom..haha!! It's an adjustment to say the least, getting used to having 2 pumps inside backpacks to carry everywhere.. and lines that can get caught on anything and everything to watch out for! It's great when he's off the TPN for his 4 hour period because then we have only one backpack to deal with... I don't know HOW we will ever go anywhere with all that but we will manage... He has his first appointment at Children's on Tuesday so that will be the test.. We have to get accustomed to giving him his meds at midnight, then 2am, then 6am, all in syringes into his g-tube and then flushing them with sterile water syringes...aaaaahhhhhh!!!!! You would NOT believe the number of syringes we have in this house! Not to mention Linc's medicine fridge they brought and placed in his room, we have cases and cases of medical supplies EVERYWHERE! I really think we have to move.. our house is beyond cluttered right now!!

He is such a sweet and happy baby... we are just thrilled beyond belief to have him home with us and see his smiling happy face every day!!!

2009-12-13T20:58:00.003-05:00

LOL.. really Lincoln??? The pink bow and bib was nurse Kim's idea.. haha!

He can be sooo dramatic.. it was NOT that bad!!!!!!!!!!!! haha, obviously Daddy was not there that day..

Yes, this is RIGHT before the pink bib and bow.. I think he knew something was up...

Mom and Dad going out to dinner at the Spaghetti Warehouse, celebrating the homecoming of the Dink!

Well, to update you all on the eye issue.. the retina guy came by, did the torture test, Linc freaked out like he always does.. poor kid.. it's awful, and checked his left eye.. yes, he does have this hemorrhage still.. unfortunately! All we can do is check it weekly and watch it.. pray it dissolves on its own.. the fear is that it could cause his retina to detach which means he could be blind in that eye.. but they are going to watch it weekly and if it looks like that is happening they can try to stop it... grrr.. it's always something!! They will do another exam tomorrow.. the specialist recommended Linc be sedated for exams as he is TRAUMATIZED by them since it is painful and horribly uncomfortable... not sure if they will or not but it could happen. We have one Monday, Dec 14.. poor Linc.. say a little prayer for him.. :(

He is coming home Tuesday, December 15, 2009!!!!!!!!!!!!! Wow!! 8 months and 10 days from when he was born! It has been a crazy crazy crazy 8 months and we are sooooo excited that he finally gets to come home!!!! This weekend has been sooo busy.. I have had training every day! Greg wanted to be there for it too but unfortunately he had to be at work every day and missed out.. Saturday was 9th grade basketball games, sunday was a booster event, etc.. he is the busiest person I know... he hates that he has to miss these moments and I hate that I always have to do them alone.. I would like to ask all of our co-workers and community members to PLEASE PLEASE be understanding this week... Greg already missed 3 days of critical training that I had to do alone, that's fine, I'm capable, but it's soo sad for him and for me that he can't be there. There is no such thing as a 'sick' day for an athletic director. I get that. My only wish and request was that Greg tell the entire community that he needed the week off, in it's entirety, to be with his family in this once in a lifetime moment, but that proved impossible. Don't get me wrong, the administration has been wonderful.. they're not the issue...lol! But there are some people that don't get it and complain etc.... and that really makes me wonder what drives them.... Grrrrrr... you know.. Karma is a bitch!!!!!!

Sorry, Greg will be mad at me for that post but I needed to say it!! haha!

Moving on, Lincoln is 14lbs 9oz and doing great!! He will come home with two pumps.... one pump for his g-tube (feeding tube) and one for his broviac (tpn, lipids, that goes to his heart)... he will be on the g-tube pump for 24 hours a day and on the broviac pump for 20 hours a day.. the pumps will be plugged in and hung on a pole at home but when we need to go somewhere they will fit into 2 separate backpacks that we will take with us... they have chargers kinda like a cell phone charger... my question was what happens when he crawls ... am I chasing him around with the pole?? lol.. but they said these kids get soo accustomed to being connected that they will put them in a little kid shopping cart or something and take it everywhere they go.. crazy yes but reality. He will be constantly hooked to them so they go where he goes... he already grasps onto them constantly..it's soo funny to watch him... like it's an extra leg or something... he feels around for his g-tube, finds it and holds on for dear life.. the funniest thing ever is when nurse Kim had him and came back from break to him HOLDING his ripped out g-tube smiling at her like nanananana!!! wow.. he is going to be a handful.. and we LOVE it!!!!!!!!! Now, it's a different story with the broviac, that one is much much more dangerous and concerning, so we discourage him from grabbing that one as much as possible... haha...

We have been getting cards and letters lately from people we've never met...it's soo nice and we love all of them! We are keeping every card and letter and making a scrapbook for Linc.. someday he can look back and see all the people that prayed for him and supported him..... and he can thank them himself!!

The Preemie LIfe

2009-12-07T22:15:00.008-05:00

Ummmm Hellllooooooo nurses!! I'm over here!! I don't care if you have 3 other babies today, my stroller isn't going to push itself!

HAHA.. oh,..OOPS, I just ripped my g-tube out!! Ding Ding Ding!! That will get their attention....haha!

Ready to go home and chase Kiki Sue around!

Mom NOOOO why are you force-feeding me wallpaper paste??

What is this foreign object you are shoving into my mouth and why does it taste like glue?

Waaaaahhhhhhhhhhhhhhhh..... Daddy's JV basketball team lost by 50 points!!!!

Little chubby boy hand... awwww..

Kiki Sue on the island.. I am not kidding when I say she was prescribed Prozac at one point but refused to take it! She is 15 and still kickin'!

Just a shot from when Cole and I went to California a couple years ago.. what a gorgeous pic of the coast!

Another one.. sorry.. just came across these tonight and reminiscing!

Cole and I took this pic and everytime I see it it makes me smile..

Linebacker.... what a chunk!

Just enjoying being with Daddy!

Mom, this is getting annoying....

Exhausted little boy....

Lincoln is on 9 cc's of Pregestimil per hour and is eating rice cereal and bananas! His Occupational Therapist is happy with his spoon-feeding progress...although it isn't perfect... we are just soooo excited that he even gets the opportunity!! Of course as soon as I found out they would 'consider' giving him cereal I spent $80 at the grocery store just buying every single flavor of stage 1 organic baby food, DHA rice cereal, spoons, organic yogurt juice and then a sippy cup and a toy....etc... haha.. he's worth it!!!!!!!!!!!! We may or may not have given him bananas baby food.. and he "may" have liked it...haha!! shhhhh... don't tell!!!!!!

He had his new eye exam today while I was there.. awwwwww.. I couldn't look... too awful with the torture cage they put on his little eye.. unfortunately the retinal hemmorhage has spread and now the retina is blocked by the blood.... we were hoping that it would've gotten smaller and less worrisome but..... that is not the case... so Dr. McGregor has called in a 'retinal specialist' to examine Linc this week.. we will update when we get results.. it is his left eye...right eye is good as of now..

We, are still hoping for a release date of December 15, 2009... I told the doctor if Lincoln isn't home for Christmas I will throw a stomping, screaming, TANTRUM!! and they know I mean it.. I did meet our 2 home nurses last week... really not sure how all of that will work but what we DO know is that we HAVE to have/require home nursing in order to qualify for the Medicaid waiver... trust me when I say we would NOT elect to have a nurse hanging out in our home 8 hours a day if it was not required.. my friends know that this is pure TORTURE for me as I am a very private person who needs my space but whatever it takes to get the Dink home is ok with me.. even if it means having a stranger in my house all day every day.... haha.. wow..

Hey, Obama! Look at ME!!! POSTER family for healthcare reform in America.. 2 working, educated.. (well actually Greg IS educated.. I was lucky enough to graduate from high school and do a year at OSUM) and responsible adults trying to get our baby home... :).. or come on TLC... let's do a reality show about PREEMIE life... haha... I know I didn't have 8 preemie's at once but I swear our story is interesting.. lol!

Little Lincoln, almost 8 months

2009-11-29T19:29:00.011-05:00

Awww.. cute little diapy butt boy!

Well, here you see our adorable little boy with his broviac in his chest, his g-tube, and of course that vicious scar from the shark attack!

Why did Daddy HAVE to eat garlic bread for lunch???

Believe it or not, this is Lincoln's bedside window.. it has a magnificent view of the Eiffel Tower.. Ooops I mean, the parking garage!

Yep, pretty sure that idiot in the giant Hummer with the brush guard just ran over a Mini-Cooper! It was bound to happen eventually!

All that's missing here is Cole, and Home!

Lincoln's first Thanksgiving!!

Hey Auctioneer! I bid 3 binkies for that case of rootbeer!

I won, drank the whole thing, sang karaoke, texted some old girlfriends... zzzzzzzz

I love Thanksgiving day football but if the Lions can't get their act together I will switch it back to Barney!

I am LOVING watching Modern Family, these people are hilarious!! I really want to hang out with Manny on the 'Outside' .

Sitting in my window during my hour of freedom!!

Sometimes I like to pretend I'm on the beach in Tahiti under the shade of a palapa! OH, sorry that's just Daddy's hair!

And that's the face I made when I killed that shark that was attacking me with my bare hands!

Daddy loving me...

I can make that face too Dad!

Me and my Daddy...

Good news first: We are 99% sure we will get the Medicaid waiver, which will cover most of Lincoln's care and nursing at home.. which is awesome.. although it is temporary and will be re-evaluated often. We have the home inspection Wednesday and will then know for sure.. the prospective discharge date is Dec. 15 if all goes well.

Bad news: All is not going well. Linc had his new eye exam to check the status of his ROP eye disease. The ROP is resolved, which is great, but an entire new problem has developed. He now has a hemorrhage in his eye.. and that's all we know.. we will get more info tomorrow when we meet with his eye doctor... sooo frustrating! All we know is she needs to talk to us and he has a follow-up exam in a week. This could very likely delay his release but hopefully not.

Other than that, Linc is doing well.. he is up to 7ml's of formula, they decided to try increasing it twice a week by one cc, looks good so far but he's also the kid that ends up getting the oddest and most unexpected issues to pop up!

The Medicaid interview was NOT fun.. the lady was very nice but it was awful to have to hear them discuss his every diagnosis/issue right in front of me. I was ok until they approached the brain issue.. but he is doing ok so far.. he is a little delayed but nothing more than any other NICU resident so we are holding onto hope that he can overcome these delays. We will be getting physical and occupational therapy at home if he ever gets there!

OH MY GOSH.. haha, had to add that, Medicaid lady DID ask us about our 'emotional' state and our 'physical' state.. I went into way too much detail trying to explain how I'm NOT crazy and when it was Greg's turn his ENTIRE answer to her was 'Good'. Haha!!! soo glad that is over!

Thank you to everyone for all your support and prayers.. it is very appreciated!!

SuperDink!

2009-11-24T21:07:00.005-05:00

Come on Obama.. where's the healthcare reform??? Sheesh! I would LIKE to go home soon!

I guess Mommy went to Macy's again.. but REALLY a tweed suit?? At least I'll look good for my internship at the White House!

You're not laughing 'with me' you're laughing 'at me'! I don't see what's sooo funny!

Susan and I play SuperDink at night.. she's Lois and I save the world from destruction!

Ok Nurses, if I hear ONE more giggle about my sweater vest I will come up outta this chair and you WILL be sorry! Dr. Wispe picked it out!

Grandma's got me.. got my Ugg's on... no, those aren't capri's they are very cool Kenneth Cole jeans... where's Kim when I need my pants fixed??

Little Linc is doing great! He is at 5.5 ml's of formula, which is the highest we've gotten so far! He is almost 14 pounds and such a cute, sweaty, chubby boy.. adorable!

We had a great weekend, Cassy had us a baby shower and we got soo many wonderful things for little Dink.. he will LOVE them all.. and we had such a fun day! Thank you Cindy, Jay, Christy, Krystle, Crystal, Shelly, and all of our friends for doing soooo much to help and all the wonderful food!!! We love you guys!

Greg and Linc's newspaper article has generated a lot of response from everyone.. the picture was a hit.. the only thing that bothers me about it is that the article almost insinuates that we personally owe a $3 million dollar medical bill.. we are lucky that Medicaid has covered the majority of his costs so far... we are not sure what will happen next since that is over when he is discharged but I want to make sure everyone knows we are not responsible for that much of a bill... don't get me wrong, we have a ton of medical bills, etc.. but nothing near $3 million or we would be in serious trouble..haha! Greg says I'm crazy (true) but I just don't want people thinking that. Our big issues are now shifting to how we will manage without my income when he is home, how will we manage the costs of his medical supplies, medications, equipment, nursing etc.. but if he is approved for full Medicaid some of that will be covered.. so just to clarify we are not in debt millions of dollars.. lol! We are very grateful for all the support and the donations in Lincoln's name.. we will use them wisely.. his care will be very complex but we are ready for the challenge. We are getting quotes from companies to have a backup generator installed in our home to ensure Lincoln's equipment never loses power and to keep his medications safely at the correct temperature, and we are hoping to have an air purifier installed in our home to keep his lungs as healthy as they can be with is lung issues. But we are prepared for whatever happens.. all that matters is that we get him home and give him a happy, stable, healthy environment in which he can grow and thrive like every baby should!

Oh my Gosh! Haha.. that is my direct quote to the 'Marion Star" article.. I honestly did NOT believe that those 3 words ever came out of my mouth until then and now I catch myself saying it 129 times a day.. pinch me if you hear it!

Ok, did any of you watch the Grey's Anatomy episode with the adorable 10 year old boy with short-gut? I couldn't believe they had an episode with Linc's condition.. and of course, we cried and cried.. I cannot imagine losing our little guy at 10 years old from this awful condition.. even though it was not 'real' it was very real to us.. we knew what those x-rays meant and the surgery.. brought back awful memories.. we just pray they DO find a cure or solution to save these little guys...we know the reality we are facing but we refuse to give up.. he is such a strong and amazing child.. he will get through this and we will learn from him.

Ok, on to less depressing news:

The foundation basketball games were soo much fun! We had a chance to meet many wonderful people and thank them personally for choosing Lincoln as their honoree for the night.. he is a popular little guy! We are humbled by the generosity of our community and the surrounding communities that have supported us... we've been on the other end of the spectrum and prayed for families, made donations, fretted over what we would do if that happened to us... and would've never thought that we would be on the other side. Everything happens for a reason, and Lincoln is here to teach us all something. Your prayers and well-wishes are working, thank you!

Tails between our legs...

2009-11-19T20:06:00.007-05:00

haha! That was sooo funny! My nurse tried to get a cannula in my nose.. no thanks!!!

Really, Spongebob?? Just marry Sandy and get it over with... sheesh!

After surgery.. NOTHING gets ME down.. I'm the DINK!

Ewww sour skittles suck!

Yeah, I like to wear my nasal cannula on my forehead when it's night-time.. makes me look cool... you know you like it!

Lincoln had surgery last Friday to install a Broviac central line and to be circumsized.. he did great!!!! They told us he would be sedated from the anesthesia and disoriented until the next morning but he came out of it smiling and coo-ing.. lol! All they could say was "It's Linc".. he is the exception to every rule! The Broviac is working great! We spent the day today being trained in Infant CPR/infant choking/G-tube care and emergencies/Broviac care and emergencies.... we learned soo much!

He is 13.8 pounds and is taking 5ml's of formula per hour... for one hour each day he can be disconnected from all tubes and wires.. it is WONDERFUL!! I got to hold him that way for the first time ever last night.. I carried him over to a window and just showed him the 'outside' .. even though it is just a bunch of buildings, at least he could see the sky!!! Daddy got to do that today too.. how precious that was for the both of them... Cassy got some good photos.. coming soon!!

The reason Lincoln is still at Children's is because he is 'uninsured'.. he is covered by Medicaid right now as 'institutionalized' but when he is released that ends.. THEN Medicaid is income based so we exceed the income level and then are completely uninsured.. this is why he is still in the hospital.. because we cannot prove that we can 'self-pay' the 3 million dollar per year cost for Lincoln's care... obviously we don't have that in our savings account...lol! WHO DOES???? Sooooo... the amazing/astounding/shocking.. truth is that we cannot bring him home until we CAN provide that for him.... the one and only hope is that Medicaid will accept him on a 'waiver'.. meaning they will waive our income and take him on based on his needs.. to ME it seems sooo unfair/illegal to KNOW that Lincoln could come home with us if we had insurance or were independently wealthy.. we HAD insurance but that is maxed out and : NOOO Greg's teacher/athletic director salary does not help us bank 1.1 milion per quarter.. lol that's my fault for too many gingerbread latte's at Starbucks I guess...haha! But in all seriousness, our caseworker and social worker are working diligently on this and praying it all works out.. my question is WHAT if it doesn't?? What if Medicaid says no??? Grrrr... and Greg and I have to be 'interviewed' by Medicaid about our knowledge of Lincoln's issues and pass a 'home inspection'.. wow... .. all I will say is WOW because when I say more I cause controversy....

In other news.. Lincoln and Greg were on the front page of the Marion Star sports page today.. great article.. yes my quotes were stupid but that's just me...lol!

Lastly, we would like to sincerely apologize for the 'MILF' onesie picture/caption and the aftermath.. it was all in good fun.. the onesie was purchased by Lincoln's aunts while on vacation.. as a joke.. it basically means 'Hot Mom' and was meant to lift my spirits when I was sooo down and depressed during the initial weeks of Lincoln's life.. some of my nurses thought it was funny and dressed him in it.. we got a good laugh as Lincoln is the 'cool' kid in the NICU and we thought posting it on the blog would be funny.. we are soo sorry for those that were offended and hurt by it..

Parole???

2009-11-10T20:01:00.008-05:00

Miley Cyrus comes by every Tuesday to serenade me, she's a sweet girl but I'm committed to Josie!

A real smile!!! Seeee how adorable he is!!!!!!!!!!!!!!!!! Of course, that hamster got him again on the cheek.. Kayla set some traps though so we're good!

Nurse Kim or "Miss Kim" always makes him smile!

Well.. we have been teased by Children's about a possible parole date!!! Or, discharge as they choose to word it.. haha! We might get our Dink home by Christmas!!! That would be amazing!!!!!!!! It is being said that he may come home the week after Thanksgiving... We shall see!!! If and when he does get out of there he will be on full tpn/lipids and g-tube feeds at home... that would've terrified us 4 months ago but at this point we welcome it and are sooo ready!!!!!! Soo... we are expediting this as much as we can ... I was trained on central line site care yesterday (nurses: CHART that..lol) and Friday I have to be trained in g-tube care, cpr, physical therapy exercises,etc... I can't wait.. at this point I am sooo ready for all of this.... we just want the DInk home.. I don't care what it takes... we will do it!!

Linc had an MRI done today on his chest and abdomen to see if any clots were present... if not, he will have his picc line removed and have a broviac implanted... this is all scheduled for friday, and they are also going to circumcise him while he is sedated... that's not funny... but trying to explain the circumcision to Cole was HILARIOUS!! Take ME who does NOT discuss private parts or their functions and insert a 10 year old who also has NO clue (thanks to me) and his response is OMG EWWW MOMMMMMMMMMMMMMM!!! This is the same kid who just stomped upstairs MAD yelling 'NICE PARENTING!'

The scary part of this whole thing is the new no-insurance/uninsurable issue we will be dealing with .. we assumed he would be covered by Medicaid but we were wrong.. once he's discharged it's over....and Lincoln was excluded by our insurance company soooo... wow... as terrifying as that is... it is the least of our concerns.. we will work it all out... all that matters is that Lincoln gets home with us... the rest will work itself out.. just keep your fingers crossed that we hit the lottery! Hahahaha...

Elvis Lives!!!!!!!!!!

2009-11-03T18:56:00.011-05:00

Father and Son!!

Mini-Elvis did NOT appreciate the gold glasses... but we did!!

No, I don't feel bad for breaking that kids ankle.. he needs to know to get out of the way when The Dink is on the field!

Cutest kid ever!! In the adorable outfit Grandpa and Grandma Rossman bought me!! Dinosaur!!

Go Deeeeep!!!

Cole as "Elvis" for Halloween...

After trick or treat at Baker's Pizza, Bucyrus Ohio!!

Exhausted after a tough day of coachen' em' up with Dad!

Ummm.. This hat makes me look fat!

Dad and Dink getting in some quality snuggle time...

Oh how I wish I was smart enough to make these snapfish pics enlarge.. why is this so hard??? Tech'ies please help?

Get out your microscope and see how freakin' cute Linc is here!!

Daddy Elvis and Baby Elvis... priceless!

Strummin his guitar.. singing to Mommy! Or more likely, Kayla!

Future Ridgedale Rocket gearing up for game day!

That's the look he gives his opponents right before the SMACKDOWN begins!! Goooo Linc!

Ohhh.. this is the cutest pic... too bad Mommy is missing the technology gene and can't enlarge the pic!!

Ok, we explained the Target pics now we can explain why the Elvis pics! Cole has been to Graceland with me and we LOVED it!! He has been a huge Elvis fan ever since so it's kinda been a theme with us... Sooo... one night he spent the evening with the Wood family and in a matter of 2 hours they managed to: bake cookies, go to dinner, and make Cole an Elvis costume!! Wow... I am proud of myself if I can do one of those things in that timeframe... but the Woods are an exception.. what awesome friends they are!! Of course I then knew I had to find Linc an Elvis costume and amazingly I found one on Polaris the next day!! It would've been great to have all 3 of my Elvis's in one pic but Children's won't allow it yet.. maybe next year..haha!

Linc is doing well.... he is at 3cc/hour of formula still and nothing else has changed. We have a new doctor for the month... Dr. Mantee or Mandee or Manatee who knows.. maybe we will find out tomorrow if he's around... Linc is kind of the big boy in the NICU just hangin' out and being an adorable baby..

Target Employee of the Month!

2009-10-27T21:58:00.010-04:00

Awww just what I need after a long day at work... Daddy!!

Could someone PLEASE remove my name tag??? I'm off the clock!

Yes, Target DOES now offer employee's naptime in the lounge, thank you!

I have 7 more minutes please be quiet!!!!!!!

Sleeping but still hearing you!!!!

Heaven!

Absolutely the cutest and sweetest sleeping baby ever!!! On Daddy of course!

Come on, Mom! Aisle 3 needs more Snuggies stocked.... let's roll!!!

NOOOO... please don't make me go get carts AGAIN!!!!

tsk tsk tsk..... I told you that pyramid of Skittles would collapse and hurt someone!! You should've listened to me!!

ALWAYS pretend to listen in staff meetings!!

I WILL say this! This is the LAST day I am grooming the hamsters... do you SEE the scratches on my face???

Ok, for everyone confused by the nametag and photo captions, allow us to elaborate. Of course we shopped for new clothes, since Lincoln has grown out of everything he has and is into 3-6 months now... and we purchased the cutest brown khaki pants (with belt of course) and red shirt... the first thing our nurse Kim said was 'Oh my gosh! That's the Target uniform!" hahahaha... yes! She is right!! It hadn't occurred to us before but then at that moment we KNEW we had to have fun with it... soooo... Greg made Lincoln a specialized Target nametag today and we had sooo much fun taking pictures with him all dressed up for work! It's these little moments and days that help us see the fun and the good in our lives and downplay the negatives in the back of our minds. Lincoln clipped on his nametag and we took him for a ride in his red stroller (car) and of course he attracted lots of attention and LOVED every second of it.. he is such an attention-hog and soooo adorable!!

He is still at 2.5cc/hour of Pregestimil w/Pectin and receives Immodium, Lovenox shots daily, Flagyl... etc... we are trying to get the Lovenox stopped and switch back to Heparin or at least insert a port into his leg for it so he doesn't have to get a daily shot.. although the Lovenox itself is said to burn and be painful :( ... it doesn't make any sense to us at all why he is still on a blood thinner such as that but that is the Hematologist's call now... haven't even met that guy yet!

Linc is still doing well with everything else as far as we know.. they are pushing for a flu vaccine for him (not H1N1 as that vaccine is too scarce apparently, even for Children's hospital to acquire) and we are thinking about it... a little worried about agreeing to it because there have been no studies on the effects it may have on tiny infants such as Lincoln.. they told us he is very highly susceptible to the flu and other respiratory illnesses and they would have much more dramatic effects on him than they would healthy older children but it still concerns us... we have a day to research and I guess we will decide from there... he also gets his 4 month vaccinations this week... sooo much to worry about..but we will figure it out! He is growing and getting chunky! He is over 11lbs now.. not sure the exact weight since they weigh him tonight but eager to find out!

Linc and his adorable NICU neighbor!! Grandma Phyllis holding Lincoln... Awww... little Josie went home! Good for her and we wish her the best!

A little setback for Mr. Linky Dink...

2009-10-15T20:06:00.008-04:00

Heyyyyy everyone! This is fun! My nurse Kim spoils me!!

Another picture Mom??? Really??

Attacking my favorite toy, Mr. Bee!

My neighbor set her alarms off again.. soooo annoying!

Sitting in my Bumbo or Bimbo as some have named it... Not sure if I like it yet!

Lincoln's feeds were stopped today because he wasn't doing so well tolerating them... but they were set to be restarted this evening at 2 cc's per hour.. Just can't seem to get over this hurdle but he's working on it. He is very active these days and is really starting to enjoy his toys and being entertained by his nurses! I finally had the opportunity to speak with his gastro doctor today... not such encouraging news from her but at least we know a little more. With such little intestine left it is to be expected that Linc will have his challenges with digestion etc... unfortunately he is not doing as well as they would like him to be doing... they said it will be a constant and difficult/complex challenge trying to feed him... he will stay dependent on TPN for quite some time.. maybe forever. Their hope is that as he grows his intestines could possibly grow and enable him to tolerate formula... so far no such luck. The only positive is that his body (liver/lungs) are processing the TPN without major damage... this has 'bought us some time' according to the doctor.. not totally sure how to interpret that comment but whatever... :( Apparently at this age most TPN dependent kids are encountering serious liver damage and have major issues from the TPN.. Linc has lucked out that he hasn't had those issues yet.... the doctor told us he may end up being a candidate for transplant but that would be the absolute last resort and that the sad truth is that those kids suffer soo much and often end up needing to be hospitalized for life after the transplant.. she said that she would NOT want to put a loved one through that... :( ... BUT, Linc is strong and he is functioning just fine on TPN so far... so this could just be one more thing that he proves the world wrong about... he is that 'little fighter' so they say! She also said that she does not want Lincoln moved to another unit during the flu season so he can stay protected in the NICU from all the nasty flu bugs going around... despite all this craziness he is a very happy and content baby... and we absolutely love and adore him!!!

Go Steelers!

2009-10-11T21:37:00.009-04:00

Whoa! Why is that big scary raccoon sitting on me???

In my new cool outift!

Yeah, it's sunny in the NICU sometimes!!!!!!

They love me here!

Grandpa Phyllis holding me for the first time!

Yeah, we are Steelers fans.. me and Chubs!

Got my hat back!

hey Grandpa Rossman!! See my hat?? Goooo Steelers!

The stroller rides make me sleeeeepyl...

Get these glasses offffff me!!!!!!!!!

Lincoln is doing well! Still stuck at 2.5ml's/hour of formula but it's better than nothing! He is sooo spoiled by his nurses that he now expects to be constantly entertained! He is a lucky boy to be loved by sooo many and have such awesome nurses looking after him!! His aunts/uncles and friends miss him sooo much and we can't wait until the day that he can have visitors again! He is right on track with all the milestones... he's just perfect!! Greg had to visit the Dink alone today since I've come down with a sore throat and cold... praying it is gone by tomorrow so I can go see my Dink again!!! His last eye exam showed no changes so that is good.. no new test for a month! No news on when we get moved to the T4 unit... I guess when things calm down there and they are ready for the little guy we will move.... Thank you to everyone that thinks of us, and thanks for the cards, gift cards, prayers you've sent.. we appreciate them all sooooo much and are very grateful!

Lincoln and friends!

2009-10-07T22:11:00.005-04:00

My shirt says 'Daddy Loves Me!!

Hi Mommy!

Cutest boy ever!!

Well, today was ALMOST moving day! When I arrived at the hospital today they said Lincoln was finally being moved to the T4 (gastro unit) today.. our nurse packed some of his stuff up (he has a TON...haha) and everyone was all ready... then word came back that it wasn't going to happen! Apparently there was some miscommunication somewhere because Dr. Balint wasn't ready for the Dink yet... she has a large number of patients that require too much attention and Linc wouldn't get all the attention he needs.. that is ok with us.. he is in a great area now and loved by sooo many nurses... he is spoiled and adorable and very loved in the NICU so we will wait it out a little longer!

The part that is hard for us is that he recognizes us and gets sooo excited when we visit him every day... it's such a great feeling to see how he responds to us and how happy he seems.. Greg couldn't make it today due to school and then homecoming stuff this evening so I called him from the NICU and put the phone up to Linc so he could talk to him... Lincoln was soooo happy when he heard his Daddy's voice! His eyes were huge and he was sooo excited!! That just really shows us how much he needs us and loves us... he was cooing 'talking' back to his daddy... broke my heart... we miss him soooo much and it gets worse every day... he is perfect.. he is the perfect little boy.. we are sooo lucky that he has made it through all the things he has and is still so perfect.

He is on 2cc's per hour of Progestimil with Pectin, TPN, Lipids, and a daily shot of something similar to Heparin but I forgot the name.. starts with an L... haha! He pulled my hair today.. and when I tried to clip his nails that proved to be impossible.. he is just too active.. gotta catch him sound asleep for that one!

Linc's big brother Cole has bronchitis... that was VERY unexpected!! He seemed fine with a little cough but I took him to the Doctor just to be sure and they actually thought he had pneumonia.. xrays showed it was not.. thank God.. he has an inhaler and an antibiotic to take but is doing fine... just scary...

This 3 hour ordeal in the Cadillac every single day is becoming quite irritating!! Can ANYONE other than US drive in Ohio?? Lol... seriously... we are on 36/37 every day for MILES upon MILES in Delaware and it is to be expected that someone in a 1991Buick will decide to drive in the passing lane the entire length reaching a max speed of 42 (in a 55 zone) while semi's block the other lane.. road rage has a whole new meaning for us now!! I scare Greg to death when I drive, and he scares me to death when HE drives..haha... not to mention the teenager on the cell phone weaving in and out of our lane and then slamming on the brakes to turn into the tanning salon, FROM THE WRONG LANE OF COURSE!!! I want to apply to be an honorary deputy, you know, like Shaq is.. lol so I can pull these people over and give a quick lesson in basic driving rules!!!

Oh, and did we mention the skunk is back?? same one.. yep.. he's back.. with a vengeance.. on these cool nights we love to sleep with our window open but apparently something startled the big guy because he sprayed our house AGAIN as we innocently slept and we've spent the last few days trying to eliminate it... and then he did it AGAIN... who can we call to relocate him?? seriously??

2009-10-05T19:34:00.006-04:00

Off to work I go!! In my new stroller..being the 3rd charge nurse is tough but the benefits are great!!! Have you SEEN my nurses???

Tooooo cool for school!

Awwww... sooo sweet.. sleeping with my creepy Seahorse!

Not sure why Daddy looks like a criminal in this pic, but Hey I still love him!

That's better!

Wow Dad... why the face??? lol..

I'm sooo cute!

Go Bucks!

Here's the latest news on Mr. Linky Dink: he is back on Lasix because he has fluid in his lungs due to a 'cold' or whatever... this helps decrease the fluid building up in his little lungs.. he is officially off Heparin now, he WAS up to 5cc's per hour of Elecare through his g-tube but that was stopped a few days ago and the new plan is to switch him to Pregestimil formula and only at 2cc's per hour...huge setback with his feedings but not totally unexpected... with sooo little intestines left we knew this would be coming.. but he is doing great otherwise.. his liver is not severely damaged by the TPN yet so that is great! We just need to take this all one day at a time... he shows no signs of any developmental issues so that is WONDERFUL!! Who knows what the future holds but we are elated that he is meeting all of his milestones and is such an adorable sweet baby! We are trying to figure out how to manage life in Meeker with a precious baby in south Columbus.. but we will work it all out.. maybe a tiny apartment in Columbus as a middle ground for the winter... not sure how we will do all this but we know we will find a way..

On much more devastating news... my dear friend lost her 2 year old daughter yesterday to an unexpected/unknown illness.. our hearts ache for them... our prayers and thoughts are with the Frayer/Lerner family at this time.... as much as we have been through, we just cannot imagine the horrible pain they are in at this time..... please say a prayer for this wonderful family..

What a precious baby we have!

2009-09-27T22:46:00.004-04:00

Hey Dad! I love you!

Awww it feels like nappy time... all tucked in with my favorite doggy book!

YO YO YO what's up! says big brother Cole!

Sooo comfy... on my daddy!

Stop laughing! I am comfy and this is my happy place!!

Check out my britches!

Hahahaa... my mommy has on ORANGE shoes!!!!!!!!

Yep, I'm on my daddy!

How cute is this boy??? SOOOO perfect!

Our little Dink is doing great! No new changes to report... we should be making the big move soon to the G-Unit (LOVE the name!!)... still on no oxygen and 5mls of formula per hour... he is getting to be a very spoiled demanding little guy and wants attention alllll the time... we love it! When he gets moved to a private room we will pretty much move in.. can't wait for some quiet time with the little guy... too bad south Columbus is sooo far from home and work but we will find a way to be there with him just as we have for the last 178 days! He is soo sweet and adorable and just like any other precious little baby, just that he has to live at Children's for another year or so... we've gotten past the point of desperation/depression/denial and have come to realize that this is the reality we are living in and we can and will make the most if it! If this means us living in a tiny hospital room on one chair/bed for another year then that is what we will do... sooo many people take for granted and even resent being woken up by a screaming baby needing a diaper or bottle or someone to kill the monster in the closet.. but we would give anything in the world to have those issues! We pray for the day that Lincoln wakes us up and NEEDS us... as we have said before.... please appreciate and value the babies you have..... not everyone is blessed in such a way... we thank God every day for our little Lincoln.. just can't wait to bring him home....

2009-09-23T22:10:00.002-04:00

Finally googled enough to figure out how to get the old version back so I could add videos... haha.. now we can get back to updating the blog much more often!

Lincoln day 171

2009-09-23T21:46:00.001-04:00

Lincoln is doing well... up to 5ml's per hour of Elecare... still on no oxygen and growing! Unfortunately blogspot changed the blog site and now I cannot figure out how to add videos and also cannot add more than one picture at a time so it takes me hours to update the blog.. grrr... I need help figuring this out I guess! He is about 8lbs 13 oz or so... he is also totally appropriate with his development so that is wonderful!!

No more oxygen!!

2009-09-16T21:01:00.000-04:00

What's missing from this picture??? His NASAL CANNULA!!! Yay... no more oxygen!! What a big boy!!! He is doing ok on the feeds and is off all oxygen support for now... he is doing great!

King Lincoln

2009-09-14T19:46:00.005-04:00

I'm all ready for the big game... grab me a cold root beer and some wings!!

You want a piece of me?? HUH??

Taking my bottle like a big boy!!

Tooo much root beer!

Voted "Best dressed boy in the NICU" by Meeker Magazine!

Just blowin' bubbles...

What's goin' on over there?? What's the score??

Wow, we LOST???????????? NOOOOOOOOOOOOOOO!!!!!!

In case you can't read it, my shirt says "I might be little but I'm tough!" (Thanks Jennifer!)

Little Lincoln is doing well... he is up to 3ml's of Elecare per hour and that is being increased to 4 tomorrow! He did have a new eye exam for ROP today and it was unchanged from last week... not good but not bad... means it is still stage 3 zone 3... we would've been very happy to see it improving but at least it isn't any worse either.... so he was NOT happy today... that exam is painful and uncomfortable and unfortunately he will have them weekly until this improves or surgery is required... pray it improves!! He is on the lowest oxygen setting on his cannula at .1 liter and they are planning on removing the cannula this week... hoping he stays off it for good!! He had a male nurse teamed up with his lady nurse and it was hilarious... apparently the male nurse "Adam" was the unlucky one to have to hold Linc down while he had his eye exam... so while I was holding him anytime Adam came around he got very angry... cracked us up!!!!! Poor Adam was just trying to change his tubing (not painful or anything) and Linc was punching him and screaming at him the entire time... sooooooo funny... what a feisty little man he is already!!! But poor Adam...lol! I think he holds grudges so that should be a warning to any male nurses he may encounter in the future..haha.. or is it just that he is sooo spoiled by his lady nurses...hmmmm??? Kayla and I had sooo much fun dressing him up in his new little Adidas track suit I got at Macy's... complete with Tennis shoes and Nike OSU onesies... I bought a few adorable track suits there so now he has an entire collection of awesome clothes hanging on his crib... we may have to rent a 'Pod' to store in the parking garage for all of Linc's toys/swings/strollers/shoes/clothing/blankets/movies/etc.... lol... they just better hope we get moved to the G-unit before Christmas because there WILL be a decorated tree with lights in his area...haha!!!

So, Greg turned 30 yesterday!!!!! We spent the day with Lincoln and had a nice dinner at home... life is as hectic as ever now... thanks to nonstop junior high/high school sports taking over!! The car a.k.a Christine is still running as of today (knocking on wood, fingers crossed, backflip over a caterpillar) yet she cost $104.99 for a BASIC oil change... seriously JIFFY LUBE!!!!!!!!! Of course I declined the additional $40.00 for the transmission fluid change they said she needed... I'm sure she will retaliate (again knocking on wood, fingers crossed, backflip over a caterpillar).. but maybe she will have mercy...haha!

Our perfect baby boy!

2009-09-11T23:43:00.003-04:00

So we've calmed down... thank God for great nurses... Kim (one of Linc's primary nurses) was on today and consoled/counseled me, I feel sooo much better... This new visitor restriction is only for the Nicu's so when Linc gets moved to the G-unit he will be able to have visitors again... October! His therapists all chart that he is right on track with all developmental/behavioral criteria so we are sooo happy.. and I must say he IS the cutest baby ever.... he is 8lbs 10 oz and 20 inches long... and perfect!!!!!!!!!!!!!!!!!!!

PISSED OFF PARENTS!!!!!!!!!!!

2009-09-10T20:27:00.004-04:00

Ok, my evening started off fairly happily.. baking cookies with Cole like the 'old' days.. (if that is possbile in our situation) but... that quickly changed when I found out that Lincoln can no longer have any visitors until 'flu' season is over.... he can only have grandparents/parents visiting him.. til Spring or whenever.. even his own brother can't come see him.. this really really makes me mad.. I get the whole 'flu' panic thing or whatever but SERIOUSLY!!!! So when is it and HOW is it that Children's hospital gained full custody of our son?? It's like he is their personal property!!! Maybe we should tag him with a 'property of Nationwide Children's Hospital sticker" Bullshit! I'm done with all of their rules/regulations/stipulations/fairytales.... so I guess they will just move him into his little new 'closet' room and leave him there to be alone.. what the hell???? NOOOOOOOO.... he needs to be at home where we can love him and give him the attention he needs.... I understand that he needs to be in this place for now but I will NOT force him into complete isolation... NOPE!!!!!!!! I do not consider myself to be a fighter/person with a backbone but I MUST say this whole hellacious experience has changed me... ARE we the ONLY people in America that have been victims of this situation??????????????????? If you are out there please email us.... WOW!!!!!!!!!

G-Unit!

2009-09-09T23:10:00.004-04:00

I am the cutest baby ever, even if my outfit is SUPER DORKY!!!! lol...

Little Dinky is doing ok... he is up to 3ml on his feeds and still loves getting those 2 precious bottles each day! We met our new doctor and he seems nice and very educated which is always a positive factor! After our little 'episode' with the NNP the other night we had a nice thorough meeting and voiced our concerns... he was very receptive and now emails us after rounds each day just to give us updates.. that is sooo nice to have!

One big huge shocking setback is that Lincoln's ROP (preemie eye issue) progressed and is now stage 3 zone 3. This is not good.. what is most shocking is that this is almost unheard of in a baby of his age... he is 47 weeks gestation and should not be facing this issue... but that's our luck! They cannot do anything at this time other than perform weekly eye exams to see if it worsens or goes away.. the odds are that it will go away but you KNOW how crappy our ODDS are!!!!!! What I understand is that even if it does worsen that they can perform laser surgery or other forms of intervention to repair the damage. He will likely have vision issues such as needing glasses etc.... but that is typical for all preemies.

We also learned that they are planning on transferring Lincoln to a permanent room in the "G-Unit' in October. This unit specializes in babies with short gut syndrome such as Lincoln. They will be able to focus more on Lincoln's feeding issues and nutrition so that is a good thing. The feeding issues are the major concern for Lincoln at this time... I know there are children in that hospital that are 4 years old and have NEVER left the hospital... I asked if that could be Lincoln's fate and they said they 'sure hope not'.... grrrrrrrrrrrrrrrrrrr!!!!!!!!!!!! I cannot possibly imagine having a child in that hospital for years... sooo unfair and sad. Having said this, once Lincoln is moved to this room he will be in a room all alone and will have a nurse that will also be caring for several other kids so he will be seriously lacking in attention and stimulation. For all my friends and family that would like to spend time with him, you are more than welcome. It kills us to imagine that precious sweet boy lying in a little room alone all day... it makes us sick... if we can somehow work it out financially I will quit working and be with him all day each day, instead of just evenings and weekends, but that is not a very likely scenario at this time.

He is cooing now and grabbing his toys... soooo adorable!!!! I promised him I would buy him more cd's, I'm pretty sure the 2 he has are getting pretty old!

Greg is sooo busy with athletic events that he is busy handling volleyball games or football games and can't be there to see Linc as much as he wants to be... this is sooo hard on him and on me as I make the long drive down there alone... but we are doing the best we can in this situation... it's awful and heartbreaking but unfortunately it is our reality...

Kiss and hug your healthy, happy families and thank God for them each day... Every smile Lincoln gives us and every time we see him renews our faith that he will be home with us someday a happy, giggling, mischevious little boy!

2009-09-07T21:54:00.004-04:00

Oh nooooo... gang symbols already??

Mom, seriously!

Dad! Mom is sooo annoying!

Lincoln is still 2 ml's of Elecare per hour but doing well otherwise!

Lincoln day 154!

2009-09-06T19:39:00.005-04:00

Lincoln's feeds were up to 4ml's per hour but are back down to 2ml's now... apparently his little butt is too sore so they backed off on the feeds... On another note... he is soo perfect developmentally that we are very excited for him! He is doing sooo well in all aspects (other than the feeds)... he has an awesome personality... what a sweetheart! His night nurse Susan took out his cannula and left him in 'room air' all night and he did sooo great! Unfortunately his day nurse put it back in since he was working a little too hard to breathe the next day with all his activity.. but it's a step in the right direction! He is 8lbs 3.5 ounces now! We also promise to be more diligent with the blog updates.. we have just been soo busy with everything that we haven't had time to get on here and update lately.. We promise to update daily from now on!! We appreciate everyone that reads our blog and thinks of our beautiful son...

Lincoln has the hiccups!

2009-08-31T21:17:00.009-04:00

All dressed up in his little Polo outfit!! I told him to 'look cool' for the pic.. good boy!

Future Ralph Lauren model!

Trying to escape the quicksand.... ohhh it's just Boppy!

WHY is that girl always screaming??? shove a bink in her mouth someone!!!!!!!

Awww... such a big little boy!

I am NOT a toy, Dad!

HA stupid monkey!!

Oh, who is that handsome young man I see?

Lincoln is still doing well.... still taking 2 bottles per day and 3ml per hour of Elecare formula.. he was 'cooing' today as the nurse stated... it was adorable!!!!! He changes sooo much every day! He is also quite nosey in the NICU... keeps his eye on who is doing what and which kid is screaming.. he is the veteran now that he has been there for 149 days!!!!!! He sees new ones come in and out every day... can't wait til it's finally his turn!! Still no word on when that may be.. but we do know it will be a very long time :( . He is a very good-natured baby... has a great friendly calm personality... amazing for all he has been through... he is adorable! He grabs and hits his hanging toys.. soo cute!!!!! 7lb 12 oz.... his due date was July 19 so he is the equivalent of 5 weeks old...

I am working full days tuesday/thursday and monday mornings.. Greg is working allll the time... most days he leaves by 7 am and doesn't get home til after 9pm (including Saturday).. all these athletic events are really making it hard for him to get to Columbus to see Lincoln... it is sooo hard on him and all of us but we know we have no choice at this point... maybe before next summer we will have Lincoln at home with us finally...

Naked Linky Dink!!

2009-08-24T21:46:00.003-04:00

HAHAAAA!! HOW CUTE!!

Cole opening gifts on his 10th Birthday!

Mr. and Mrs. Rossman.. oh wait.. Greg and Kitty Sue.. if I get near her while they are cuddling she will gouge my eyes out!

Double rainbows from the deck.. that HAS to be a good sign.. right???

No big updates here... just random pictures... Lincoln is still doing well with the feeds and loving his bottle feedings.. still only 2 bottles per day at 2ml per bottle but that is better than all g-tube! He is getting sooo big! He had one of his favorite nurses today.. thank goodness!! Stressful few days with one we were NOT happy with but today had Andrea so he had a great day! Of course, being the outspoken mommy I have become, I added the big meanie to the 'banned nurse' list so we don't end up with her again... I've only felt compelled to ban 2 nurses so far in our 141 days so that's not too bad! Gotta look out for our little guys well-being! Grandpa and Grandma Rossman are coming to visit tomorrow... he will love to see them and be spoiled a little more!

Lincoln gets a bottle!!!

2009-08-22T21:19:00.006-04:00

Mom giving Lincoln a bottle!! He LOVED it!!

Those 2ml's went down really fast.. awww!

Just being cute..

Haha...

Not sure why the 'big eyes' today but adorable!

Lincoln is doing pretty well... he got his first bottle yesterday and he LOVES it!! Unfortunately he only gets 2 ml's by bottle twice a day which is a tiny amount but the fact that he is able to coordinate the whole 'suck, swallow, breathe' process is wonderful! That is a big concern for these little guys that are g-tube fed and he had no problems with it at all.. we are hoping Monday that we can increase the amounts by bottle... that would be sooo great.. He is now 7lbs 10 ounces! He does have a slight fever today and yesterday and seems a little fussy but when I held him he was great.. maybe he just needs more interaction during the day... hopefully one of our primary nurses will get him tomorrow.. he doesn't seem to like new nurses which is what he has had for 2 days now...

Cole's party went well... he had a ton of friends there and they had a great time swimming and running around like crazy... and we were lucky enough to have electricity for the whole day..haha!

Goodbye Libby :(

2009-08-19T22:22:00.005-04:00

Cuddle time with my cow....

Exhausted...

Physical Therapists wear me out!!

So... Lincoln Squarepants is doing well! Nurse Kayla and I decided we needed to add a nickname of Lincoln Squarepants because he is such a cute little pudgy square boy right now... short and chubby! What makes us sad is that one of Linc's favorite primary nurses is leaving after tomorrow :(..Libby is moving to Baltimore... She has been with us during sooo many really really bad days and also many very good days.... awww.... we will miss her sooo much and really appreciate the love and care she has given to our little Mr. Squarepants.. it's funny how attached you become to the nurses that devote their lives to these little miracles... it takes a very special person to be a GREAT nurse and we have been blessed with more than our fair share and are very grateful!

In other news.... Cole is turning 10 tomorrow!! Big birthday party at 6! Rain or shine.. who cares!! It will be fun regardless.. and if AEP screws us over one more time we will celebrate Amish style as previously noted... it will be fun for all regardless... Can't believe he is 10 already... time flies...

Linc is till receiving 2ml/hour or Elecare formula and seems to be doing ok with it... no other updates really.. just that he is absolutely adorable!

Amish birthday!

2009-08-18T20:10:00.004-04:00

Chubby cheeks on Daddy!

Trying to get a good pic of the adorable doggy slippers!

HAHA... the slippers are sooo cute!

Ok, last slippers pic.... we promise!

Day 135... Lincoln's feeds were increased to 2ml/hour this afternoon.. we are very anxious to see how he tolerates it! We went on a 'field trip' aren't our nurses funny! I suggested since it was a 'field trip' that we should at least go outside for a second so he can breathe fresh air and see a tree.. but that is forbidden :( ... he really enjoyed it and got lots of attention from everyone in the hallways.. he was wide awake and propped up in his boppy a.k.a Bob.. and was totally adorable!!!!!!! The funny thing is that as soon as we got into the dark ultrasound room and they put the warm gel on his belly he fell fast asleep and stayed that way.. this was an ultrasound to see the status of the blood clot from his old picc line... don't have results yet. If they are good they will be able to stop giving him Heparin finally!! Dad got to change 2 poopy diapers tonight... that was very funny... I almost videotaped it but decided against it! Everyone keeps asking us if Linc is "ok"... as in "is he going to be mentally disabled". The answer is NO. He is right on target developmentally and behaviorally right now. Not to say that he will not have some problems but from what we are told if he had severe disabilities that they would be showing by now.. he is perfect other than the feeding problems. He makes eye contact and will watch you.. he follows objects with his eyes, he reaches for and loves watching his toys... he loves listening to his music and reacts to loud noises... he is a good natured baby and usually only cries when he needs a diaper change, is bored, or we annoy him too much (Daddy...lol)... he moves all his limbs in equal motion... he tries to 'stand' when you hold him up... he can lift his head and move it all around and gets stronger every day.. physical therapists work with him often to work the muscles that would normally be used much more if he were a well baby at home... all nicu babies are seen by therapists... he grasps onto things and has a very strong grip! Sorry for the list but I feel bad sometimes for him that people may be expecting a severely disabled brain damaged kid when he is so perfect... yes we know the future is uncertain but we also know that he acts like a normal baby and the latest brain scan did not show much (if any) permanent damage so we are very optimistic for him! I would probably assume that too by looking at some of our less than positive blog posts...lol!!! But babies brains are amazing and still growing,,, there are kids with much worse brain bleeds than he had that are completely normal.... he is one of them... we can see it in his eyes and every day that we spend with him makes us feel that much more positive and happy for him...

As for the rest of our daily life, our living room tv finally went to electronics heaven so we have ordered a new one (add that to the list of things breaking...lol), so Greg has THAT to look forward to at least! Cole's big birthday bash is Thursday... supposed to be an outside party but now looks like it will storm... greatttttt.... and I heard a rumor that our fabuous electricy company is going to shut off all electricity to the lucky few of us that have them on THURSDAY!! LOLLLLL... wow our luck is great! What the hell, the Amish do it and are always smiling, so can we! Amish 10th Birthday... maybe we will eat pie and raise a barn!!!! Everyone is required to dress the part so come in your Amish best!

Linky Dink.. Day 133 in the NICU

2009-08-16T21:59:00.006-04:00

I LOVE my toys!!

Stupid Monkey never stays still!

Kayla and I are playing dress-up!!

This is boring....

I am sooo cute..

Whoa!!!

When does my new t.v. get here?? Geeeezzzz

Things are going well for Lincoln.... if you ignore his feeding issues of course! His oxygen is increased to .4liters... he was on .1 before they increased his feeds to 2ml/hour.. he wasn't able to tolerate the increase in his formula and that seemed to alter his breathing as well.... hopefully we can keep going down on the O's and get him back to .1 soon. He is currently on 1ml of formula... not sure how or when they will try to increase it again... so he is still 100% TPN dependent... not good.... but it is what it is!! He is doing soooo well developmentally... I swear every day when I see him he is more advanced than the day before... I am sooo impressed with him!! When I held him today and tried to 'stand' him up he actually straightened his legs and stood like a big boy!! He is really only a one month old baby yet he is doing things that 3 months old babies do... yay!!!!!! He is doing great with holding his head up and loves to stand and bounce on his legs.. Kayla (one of his favorite nurses!) said she has been doing leg'strengthening with him and he is doing great at it... what a strong boy!!!!! She also surprised me today with having him all dressed up in his adorable frog outfit I bought when I was still pregnant.. awww!!!!!!!! We LOVE our nurses!!!!!!!! He is also such a good natured content baby... it reallllly is starting to kill us that we can't bring this awesome, adorable, baby home with us... but we know the reality and that it will take some time... but we also know he will be home with us someday.... until then he is in great hands with our wonderful nurses.... but we miss him soooo much at home.... :( ....

2009-08-13T23:21:00.002-04:00

Air Jordan?? NOOOOOO...... Air Lincoln!!!!!!!!!!!!!

Why you always lookin' at me?

Really People???

Hey Cole.... that sucker was meant for me!!

Daddy loves me soooo much....

Big brother Cole... the ride home is NO fun!

No, I will NOT open my eyes...until the camera is turned off!

Yeah, that's my mommy!

Sooo... feeds may begin again tomorrow.. they inserted/installed a new PICC line in Linc's left arm tonight... this is the central catheter that takes in his TPN/LIPIDS/etc.. the procedure went ok.... thanks to good nurses and fentynal...

You know... this really sucks.. sucks for us, sucks for Cole.. but REALLY sucks for Lincoln. Yet, he is such a gooooood baby... he is not the screamer next to his bed.... actually he gets VERY annoyed and upset at the 'screamer' and her cohorts.......he apparently does NOT understand why they scream all the time.. he's a funny little boy... and his tv lasted 4 days before it malfunctioned...sooo.. .we re-ordered a new tv and should be here soon... not sure when he might get paroled.. .maybe someday!!!!!!!!!!!!!!

Feeds stopped...AGAIN!

2009-08-13T11:25:00.002-04:00

Just a quick update on little Lincoln. Feeds were stopped again yesterday... he was having some strange nasty orange stuff coming out of his g-tube area. Apparently when they pulled some fluid out of it they got 10 ml's... he only gets 2 per hour so it sounds like it has been backing up for a while. He made it 7 days this time... the other 2 times he was fed each lasted 9 days before NEC set in.. they did an x-ray last night but did not see anything or could not see anything, not sure which. That is good I guess. This is causing him breathing issues so he was given 'albuterol' i think.. or something that sounds like that (Greg talked to the nurse and relayed it to me...lol). Now I'm worried that this will be a double setback and include breathing problems... he was doing so well with his breathing :(. We will update you all when we find anything new out. Keeping our fingers crossed that this is no big deal and we can continue on, but that's probably wishful thinking!

Where's the remote???

2009-08-10T23:14:00.004-04:00

Linc, looking for Sportscenter... oops we don't get cable yet!!

Dateline is soooooo boring!

WHO in the world actually orders an 'AbCirclePro???' lol... DADDY does!!!

ZZZZZZZZZ

YIKES! Mom put that scary raccoon back in my crib!!

You need somethin'???

Loving the swing!

Awww... soo relaxed!

Sleeeeepy....

Mommy pulled his binky out trying to get a good pic... LOL

Lincoln is great... always makes us laugh with his little attitude!! His feeds are going fine... 1ml per hour of Elecare plus pectin... not sure why they haven't tried to increase it yet but that's their call I guess. He seems to be tolerating the feeds ok so far! He is about 6 and 1/2 pounds and maybe a little more now... so he has grown out of his little preemie clothes...he's a big boy! We try to dress him in blues or reds now... green and yellow aren't the best choices thanks to the TPN tinting his skin a little yellow-greenish...! He looks great in blue anyway..haha! I am amazed by his strength.. he really seems to be a very strong little guy! I know physical therapy checks him and works with him often... he is on target for his development and behavior.. that makes us soo optimistic and hopeful! He loves being in his swing and looking at himself in his new mirror! His scar is looking better...still looks awful to me but the nurses swear it looks great and is healing well... I'm sure when he is older he will have lots of explanations for it... like when he had the 'shark attack' or the 'pirate sword fight'!! We will back him up!!! lol! Life is getting very very busy for us here.. Dad's athletic director duties are really keeping him busy!! Cole has his 10th birthday party on the 20th and school starts soon after... We played the Wii tonight.. Cole made a Wii-me of Lincoln... Lincoln actually kicked my butt in baseball!! We just can't wait to get him home with us and have those evenings with him here... keeping our fingers crossed that it will be before Christmas!

Linc's crib!

2009-08-09T21:22:00.002-04:00

Sorry for no Lincoln pics this time... we took some on our phones but are still waiting on them to upload... we will get them added tonight or tomorrow. We spent the weekend in Columbus celebrating our one year anniversary...had such a great time! Lincoln is doing well with the feeds so far... still only 1ml per hour but so far so good! He is sooo funny and has a very cute personality... It's very disappointing to hear that he will be there for soo many more months but we are trying to think positive and tell ourselves he will be home sooner than that! We hung his tv on his crib... Linc doesn't seem very interested yet but Greg seems to be enjoying watching golf/news and everything else while we sit there...lol! We are going to buy him some educational dvd's also! Our nurses think we are completely crazy but we figure as long as Linc is living there he will at least have something fun to do!!! Oh and they've realized they will be able to watch the OSU football games thanks to our purchase...lol.. OSU parties at Lincoln's crib!!!!!!

Update...

2009-08-06T22:41:00.003-04:00

Our new doctor of the month is wonderful! We are soo happy.. he spent at least an hour just talking to us and listening.. we really needed that. Linc's brain ultrasound showed no hydrocephalus requiring a shunt.. so that's great... and it showed no pvl (permanent damage)... but.....there are areas of concern... which sucks... but... it's all soooo out of our control.. it's not like you can go get a BRAIN transplant!!!!!!!!!!! But, like our new doctor told us... we need to watch Linc.. he moves and acts appropriate.. no issues yet so that is good.. not that we are in the clear but.. we are trying to take it one day at a time... the feedings are going ok as of now... but only 1ml per hour... praying it goes welll... it is our one year anniversary on Saturday, we are planning a great weekend.. Friday with great friends and the Funny Bone!! Saturday is yet to be determined!! Just happy to be together and enjoy ourselves....... just wish Lincoln could be part of it. maybe someday...

2009-08-05T23:48:00.004-04:00

Giddy-Up!

Love from Daddy!

Bright lights from the window!

Double stop signs!!! Too much love from Daddy again!!

Hey guys!! Watch me pull out my oxygen and laugh!!

Lincoln is doing well.... they started slow feeds into his g-tube of Elecare (a special formula)... hopefully it goes ok.. 1 ml per hour on direct connect... he also has a hernia (or two) but that will be dealt with further down the road! He had a new brain ultrasound today but no one can tell us what the results are yet... that worries me but maybe it will be good news... nagging feeling that when they are secretive they are hiding the truth until we get there... praying tomorrow afternoon is not bad news delivered to us in a special room... sooooo tired of this run-around!!!!!!

I've learned that this hellacious experience has changed me immensely... one year ago I would've never had the nerve to be so direct with a doctor or ask questions like I do now... but I also know that Lincoln is our son.... and we will do anything to help him and give him the attention and care that he needs... as frustrating as this whole ordeal is... we know he is the focus.

He is soooo sweet and sooo cute... he tries to touch the monkeys in his rainforest crib toy and his grandma/grandpa Phyllis bought him an awesome swing that he LOVES to be in!! We also used our 'anniversary' money to buy him a little flat screen tv for his crib.. now he can watch tv or Barney dvd's!!!

We brought the camper back to Meeker.... we loved the Cardinal Center and everyone there was sooo amazing and kind... we will miss the Cardinal and the staff so much!

It's going to be a very very busy month... Cole has a birthday August 20 (10 years old..wow!), Greg is back to Athletic Director stuff and school starts soon... we were really hoping Linc would be home by now but it sounds like we have several more months of Childrens... :( .... We celebrate our first wedding anniversary Saturday... it has really flown by!!

Lincoln gets an upgrade!!

2009-07-31T12:59:00.010-04:00

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!

2009-07-25T22:18:00.002-04:00

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

2009-07-25T21:53:00.005-04:00

Team Lincoln... Day 109!

2009-07-23T20:00:00.003-04:00

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!

2009-07-22T20:36:00.003-04:00

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

2009-07-19T21:06:00.006-04:00

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

2009-07-15T21:32:00.003-04:00

Feisty Little Guy!

2009-07-15T21:00:00.004-04:00

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!

2009-07-13T20:44:00.006-04:00

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...

2009-07-11T01:36:00.003-04:00

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...

2009-07-10T21:26:00.001-04:00

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!

2009-07-09T21:46:00.004-04:00

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

2009-07-08T11:43:00.004-04:00

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.

2009-07-06T14:26:00.004-04:00

Lincoln is 13 weeks old!!

2009-07-05T22:34:00.002-04:00

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!

2009-07-02T23:09:00.005-04:00

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!!

2009-07-01T20:10:00.003-04:00

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!!!

Otter Smackdown!

2009-06-27T19:26:00.006-04:00

Lincoln and his otter.. we tried to make him love it today but he wore himself out trying to beat it up... he was NOT in the mood to make friends!

Well, Dad WAS holding but thought he smelled Subway and we had to trade spots so he could go get a pizza sub downstairs!

OMG! Greg only owns ONE shirt!! We really need to do some shopping..

Great visit with LJ today! He is back on the cpap as you can see from the pictures... he HATES it!!!! Hates it and fights it all day...haha.. we tried to explain to him that it is for his own good but he wouldn't listen! We grounded him and told him he couldn't leave his isolette until he can behave! hahaa.... So I guess grounding him works since they are moving him to a big boy CRIB tonight!! wooo-hooooo!! Although he continues to fight the cpap apparatus he is doing great on it! He knows how to unhook it though but the good thing is he seems to do just fine when it is disconnected so we can't get too upset with him! We spent all day yesterday with him as he had a new procedure done to examine his intestinal tract. It seemed to go well... it may just be that his intestines are slow but functional and time will heal them. They are considering placing him on medication to speed them up and try to re-feed.. We were soo relieved and happy to be there with him during the test and to have the doctors explain each step to us.. he was sooo angry at having the test done but he kept his stats all good and stayed strong! I must say we have never seen him be sooo angry and feisty! Our nurse, Libby (who we LOVE) told us that is typical of the older preemies since they absolutely hate the cpap! She also said it is awesome that he is soo feisty and mad at it since it shows just how responsive and appropriate he is! His poor little face is all smushed by it and it's hard for him to open his eyes but it is soo much better for his lungs than the vent was. He is on NO antibiotics at this time! Wow, I think that's the first time in his life that he hasn't been on antibiotics! He cries now.. which is adorable but also makes us feel soo bad... he barely has any voice but as soon as his vocal chords heal he will be able to scream like he wants to. Our nurses tease us that he is soo high maintenance and attention-seeking and we've witnessed it. He can't hold his binky in on his own just yet but if you are holding it for him and stop at any point he will scream and turn totally red... of course if you put it back in he's fine..haha! We love it.. he deserves to scream and be demanding allllll he wants! We plan to shop before the hospital tomorrow and buy some crib toys, mobile, and mirror for him.. what is crazy is that he is STILL in the micro-preemie small baby pod which RARELY if ever, has cribs in it.. haha.. but they dont want to let him go yet.. the nurses fight over which one gets him every day.. he is QUITE the man in there! We are going to get t-shirts made for ourselves and Linc that say "Team Lincoln".. we're not sure of the rest yet but we think it will be fun! We have a really good feeling that everything is changing for the better in Lincoln's life.. we can't wait to get him home someday!

Doctor Smackdown!

2009-06-25T21:41:00.006-04:00

Day 81 of Little Lincoln's journey! We've had alot of inquiries regarding Lincoln's status with his new feedings.... so here goes: Feedings only lasted about 33 hours before they were stopped last night. The same thing happened this time that happened a couple weeks ago... something is seriously wrong with his digestive tract that is baffling our doctors. What we know now is that our surgeon is out until Monday so his partner will be evaluating Lincoln in the morning and will give us her opinion. All options have been exhausted so we have NO idea what will be suggested now. His stomach is red, swollen, and very tender but he has loving gentle nurses taking great care of him and ensuring he is comfortable. On a happy note, they are planning to remove the ventilator tube and place him back on the cpap tomorrow! Once his vocal cords heal he will have a voice again! Can't wait to hear him cry!

Off the subject and a little bit of ranting: We, as parents, are very involved in Lincoln's care. We educate ourselves thoroughly on every single diagnosis or issue that comes up so that we are prepared and informed and can search for therapies or tools to help him improve. This apparently is annoying and frustrating to our doctor. We actually had an impromptu surprise meeting this week with our newest doctor, the surgeon, the NNP, the nurse, pastoral care, and the social worker. We thought we were only meeting with the surgeon to discuss his plan for Lincoln but what actually transpired in the meeting was totally different! The doctor used this meeting as an opportunity to downplay our concerns and frustrations and interject her own personal assessment of our situation. She stated that we need to learn to accept Lincoln's conditions and stop concerning ourselves with the life long issues he may have. I get her point! But what she doesn't realize is that while we are with Lincoln, he is our only concern. We spend our time holding and loving him. We buy him adorable outfits and take pictures every day. We search for educational toys to place in his isolette. We call constantly when we can't be there. We tell Linc all about his home, Kitty Sue, his brother, the happy future we envision! When we are NOT with him we spend hours reading about his conditions, alternative therapies, and gathering as much information from his doctors as we can. We thought this made us responsible loving parents! As parents who have been told to prepare for Cerebral Palsy, motor skill problems, learning deficits, vision issues, breathing issues, brain damage, etc.. wouldn't you be concerned??? OBVIOUSLY we adore and love him! Why would we drive 3 hours a day to hold him and kiss him and talk to him?? Needless to say, Greg had to grab onto my leg and sshhhhh me so I didn't jump out of my chair!! What I later found out from a nurse/friend is that the doctor is irritated with us because we are educated and involved and it is an inconvenience to her. Apparently they mostly deal with parents that just go with the flow blindly... that's not us. I spoke in length to our nurses about this meeting and they had actually heard all about it and were as stunned as we were! They said this doctor has only seen us 2 times and has no idea the time and love we put in at that hospital. We can endure the occasional clash with a doctor and are comforted by the fact that we are in the best Children's hospital in the world.. personality issues may arise but we know he is in very good hands. All we want is the best care for Lincoln and to be informed and involved so that we can do everything possible to give Lincoln a wonderful life.

Linky Dink!

2009-06-23T23:04:00.003-04:00

I was fortunate enough to be a spectator during Lincoln's procedure today. I accompanied Linc and his nurse, respiratory therapist, NNP, and assistants to Flouroscopy so they could remove his feeding tube and replace it with a larger tube. I must say the room we were in was very very interesting.. I almost felt as if I was in Star Trek episode....haha! The technology and equipment was unlike anything I have ever seen and I loved that they had rock music playing loudly.. made it feel much more relaxed and low-key than the usual silent, cold procedure room! He was cool with it until the actual tube exchange began to take place... at that moment he showed his opinion and at one point managed to free one arm just to place it directly in the doctors way with his hand open as if he was saying "ENOUGH!" it was funny.. I love his spunk! Hopefully the larger tube will enable the formula to enter into his system and digest as planned! They are also planning to place him back on the cpap soon.. that will be great! I have been really struggling to find small items to place in his isolette to help his eyes and development... I did find one small black/white/red cow and I positioned it right in front of his eyes tonight to see if he would notice... he DID notice and actually went cross-eyed looking at it! Haha.. his nurse assured me that is totally normal and actually is a good sign! I was just thrilled that he was focusing on things.. he is such an awesome little fighter! As for Greg, Cole, and I, we are living one day at a time! We LOVE staying at our new campground home, Cardinal Center! We only have about 1.5 weeks left there but we plan to enjoy it while we have it and it makes for such a shorter drive to Children's. When our time is up we will be back in Meeker and will figure out the rest of the summer from there...

Feedings Round 4!

2009-06-22T20:32:00.003-04:00

Lincoln is doing ok... we met with surgeons and his doctor today and they've decided against attempting another surgery! Our surgeon told us that Linc cannot make it with the loss of more intestine and as he is now there is the possibility he will have to be tube fed for part of his life or maybe even his whole life. That is soo scary for us but the good news is that they are confident that he is going to survive this whole ordeal. They said his brain scans are decent, there is the area of damage but it is small and he has every chance at having a very good quality of life. Since they have no more options regarding his bowel they are going to go ahead and surgically insert a new larger feeding tube into his stomach and begin feeding him elecare again tomorrow. Their thoughts are that maybe his intestines and stomach just need to get used to the formula and adjust. They are also planning on removing the ventilator and putting him back on cpap this week. That would be wonderful so his lungs can begin to heal and he can cry again! He has definitely turned into a big boy and is doing cute baby things!

Happy Fathers Day!

2009-06-21T22:21:00.003-04:00

Monday is a big day for us.... if you look at our history on this blog you will see that Monday is scary in our NICU world. The big test for Lincoln is his ability to be fed and tolerate the feeds. Feeds were restarted on Friday morning.. as of Saturday afternoon feeds were stopped. Apparently feedings did not go well. This has reignited the doctors zest for performing another surgery on our little boy. Our hope was that once feedings were re-introduced, that all would go well and LIncoln would grow and gain weight as a baby should. All options have been exhausted. The last and only option left is to surgically open him up and search for the source of his problems. This is very scary for us since we have been told that he will not be able to survive if he lost any more intestine. With this new information we can only wait until the morning when we meet with his surgical team to see what the new plan is. He is beautiful and such a feisty little boy that we have no doubt that he will overcome whatever this newest hurdle will be. We are enjoying dressing him finally and that is soooo much fun for us! He was 4lb 2.5 oz as of last night and looks like a big boy! I held him today and realized how strong he is! He was trying to turn his head (bigggg no-no with the vent-tube in) and as I tried to hold it down I realized how much strength he has! He is a VERY strong baby and is just as stubborn as his daddy! He has a reputation in the J4 NICU... they triple tape his cords and lines and their only reasoning is that "it's Lincoln" .... he is such a fighter and the strongest child I've ever seen.. we cannot wait to get him home with us!