Santa Dink!

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!

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!!!

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

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

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!!