Otter Smackdown!

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!

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!

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!

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!

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!

Random pics and a quick update!

Linc is swaddled! He loves it!

Lincoln being held up by Dad so the nurse could change his bed.. I don't think he liked it!

Mom and Kitty Sue, the "Queen" of Meeker... she will have to make a huge adjustment when Hercules gets home!

I think Dad looks a little perplexed while trying to assemble Linc's crib!

Lincoln is doing ok.. not great.. but ok! He has alot of discharge from his lungs due to the pneumonia and his vent settings were increased but he is still stable. He was feisty today which we LOVE! He keeps trying to extubate himself and pull his vent tube out but that would not be good..! I held him for a while and he did very well... he loves being held and swaddled... he gets cuter every day! They are dressing him so we are having fun with that.. he has a little preemie buddy at Childrens now so we bought them matching whale onesies and little blue shorts... sooo cute!! He is on 'air' mode in his isolette which means he is able to regulate his own temperature ... this makes us very happy since we know that severely brain damaged kids are unable to do that. He is also on 'cycled' lighting so he has lights on from 7a-7p every day. He is turning into a big boy! He gets an ulrasound in the morning to check the status of the blood clot on his picc line.. we hope that goes well. They are also cautiously restarting feeds tomorrow.. that will be interesting! The doctor thinks he still has some dead bowel or scarred bowel and the only way to find out is to feed him again.. we can just hope and pray that it goes well and we can move on with growing and feeding and eliminate the tpn feeds... Camping is going great! Cole loves it and it's a nice getaway for us as well as keeping us much closer to Lincoln!

Dressed and Ready for the Day!

They are dressing him now!!! Soo cute... hard to get a good cell-phone picture through the isolette but we tried.. he started to open his eyes for it but the morphine had him sedated.

As Lincoln always does, he defied the odds again today! His pneumonia is already improving and they are no longer getting the blood out of his breathing tube.. the gram-negative infection of the week is e-coli (4th time so far) and is being treated with more antibiotics. He didn't wake up during our visit but looked adorable in his little outfit. They said they will dress him in whatever as long as it doesn't have feet! I washed several of his little preemie outfits and will take them in tomorrow. I'll try to remember my good camera and video camera to get some good pics/videos to post. He's not in the clear with his new infections but we were happy to hear they seemed to be improving. His weight last night was 4lbs 2 oz (that one's for you, Judy!).. some of that is the excess fluid he's retaining but still an impressive weight! We also learned this weekend that when Lincoln's face turns bright red and he appears to hold his breath and bite down on his tube, that he is angry.. haha! We just thought it was a funny thing he did and since he can't cry right now we didn't realize he was getting angry.. it's cute though.. I'll try to catch it on video for you if he gets mad at me tomorrow!

One of our primary nurses that we love came running in today.. apparently a baby in our pod 'coded' and she thought it was Lincoln. Luckily it was not our little guy but unfortunately it was another baby in our little room and she didn't make it. Such a sad day for all involved.. the parents were there and as far as we could tell it came as a surprise to them.. it's just so sad what these micro-preemies and their families go through in the NICU.

Today's New Diagnosis.... PNEUMONIA!

Quick update while we are at the hospital... We just spoke to our doctor and found out today's newest battle is pneumonia! It is also deteremined to be a severe form since they are getting blood out of the breathing tube when they suction him... they should also have the results of the culture by tomorrow to tell us what the name is of the gram-negative infection he also has.. so we are not going to be able to start feeding him again for a while... they increased his vent settings (not good) and added in even more antibiotics to treat him. His blood pressure is very high and his heart rate keeps fluctuating drastically causing the alarms to go off... The latest chest xray shows low lung volume, fluid/blood, and a large cyst on his lung.. no idea what that is all about!!! He is fighting through it but it's awful that he has yet another issue to deal with... We will post updates as soon as we get them... we are heading to the camper to try and figure out how to fix the broken hot water tank so we can start staying there again tomorrow night...

The Infection of the Day!

Lincoln gets cuter every day!

Last night while visiting Lincoln his stats kept dropping drastically and the alarms would go off.. they said he had been like that all day and they were going up a little on his vent settings. This tells us a new infection or issue is just around the corner waiting to pop up!

They did cultures and found some 'gram negative bacteria' on his breathing tube but results aren't in yet about exactly what the new infection is and if it has reached his fluids, blood, and organs yet (sepsis). We are very confused since he has not been off antibiotics and anti-fungal medications.. he is on several of the strongest ones available yet continues to acquire serious deadly infections??? So now he has some sort of gram negative infection, infected blood clot near his heart on the picc line, low lung volume, blood coming out of his et-tube when they suction (breathing tube), blood in his diaper, malnourishment, severely low platelet count, low blood counts.... that's all I can think of from the last couple of days... so yes, we are very frustrated!! He was very lethargic when we were there but that could be from the trauma he sustained yesterday with the insertion of a new arterial line and iv's. He had blood and platelet transfusions yesterday and is getting them again right now. Obviously their broad spectrum antibiotics are NOT working!!! They still don't know what is going on with our little man.. we get a new doctor beginning monday so that will be interesting! On one possibly good note: they are planning to start feeding him again today.. basically as an experiment to see if he can tolerate it. We know Lincoln and he is the strongest, sweetest, most precious child and nothing will bring him down.. he will get through all of these things again and continue to amaze us all.. he's adorable!!

2 months, 1 week

Sweet Dreams! Looking much less swollen and absolutely adorable.

It's just neverending confusion in the NICU world we are living in! We were told last night that his liver is enlarged and today they did an ultrasound on his abdomen and could also see calcium deposits on the liver but aren't overly concerned. Their thoughts are that he has an infected blood clot attached to his PICC line (a line that goes into a vein and carries medication/fluids into a vein close to his heart) So they are going to remove the picc line, treat with more antibiotics and reinsert the PICC somewhere else.. maybe even his head :(. This newly found infection/clot is unrelated to the bleeding into his diaper and to all the abnormal blood cells he has in his blood so they are still searching for the cause of those issues. We asked our doctor if they will be able to try to feed him soon and he said he was consulting with our surgeon about that today.. so maybe, hopefully we can start feeds again very soon before his liver is destroyed by the TPN! We had some friends join us at the camper last night and had a great time visiting! Woke up today to find the hot water tank is not working in the camper and there is also a major water leak so we shut the water off and headed to Marion for the night... My cousin emailed us that he has booked us a room at a nearby hotel for the weekend so that works out perfectly.. he is so kind! Hopefully we can figure out the water issue at the camper this weekend and have it all ready again for next week. I held Lincoln for a long time today and he did great.. he loves to be held.. he's sooo sweet. He had several visitors last night so that was great; Judy, Marcy, Grandma Phyllis and Aunt Bernice.

Daddy's Turn!

Daddy and Lincoln bonding!

Adorable.. ignore the head iv.. it doesn't hurt him!

Future Rocket Linebacker!

Sleepy boy!

Dad was trying to kiss his little furry head but couldn't reach!

Greg's response to me laughing hysterically at him being taped down!

What a confusing week!! Just last Thursday we felt like they were preparing us for a major downturn in Lincoln's health and it seemed as though there was no chance of survival for him.. but as he always does, he has proven them wrong! The contrast study done on Lincoln's lower intestines showed they are ok!! The doctors and we were SHOCKED! We were all convinced he had dead or seriously injured bowel but now we know that at least the lower section is ok.. the part that is a little higher up was not tested but seems to be in working order! Of course that was great and unexpected news.. but that just leads to more questions about why his platelets are constantly dropping despite almost daily transfusions... and he is having more bleeding into his diaper. No one can quite figure this out so far.. we were all convinced it was a problem from the recent NEC diagnosis and was a bowel issue but now we do not know. He has not had anymore abnormal cells so leukemia doesn't seem likely... it's a mystery.. because of his illness he is having malnutrition issues from the TPN... despite the fact that they are giving him all the necessary nutrients through the iv (tpn) they aren't being absorbed (or something like that... it's confusing).. so his 'albumin' (protein) level is very low now too. He got more platelets today and blood yesterday.. it's a neverending process! After yesterday's major scare I let Daddy hold him today.. haha.. they did very well and I almost had the leave the NICU from laughing so hard at Daddy having soo many issues. It all started when he had to have his arm taped with a million cords and was instructed to NOT MOVE his arm so we didn't have a repeat of yesterdays adventures.. so being Greg he struggled greatly with being pinned down/taped down to the chair while unable to recline fully or move in general.. it really was hilarious to see and I had to remind him that I do this every day for many more hours.. haha! Of course he loved it though and it is totally worth it to hold our precious son for as long as we can every day... Lincoln did attempt to push off his dad and escape a few times but we didn't let him.. or as our hilarious doctor put it 'try not to let him commit suicide on you today'.. haha!! He cracks us up!!!

Lincoln vents!

Lincoln is very puffy today but very adorable... his regular doctor (who happens to be the Chief of Neonatology at Children's!) was back on duty today so we had the opportunity to sit and chat with him and the surgeon that did his first NEC surgery. They really can't tell us very much about his condition since it's impossible to see inside his intestines without surgery but they are going to do a contrast study on his intestines tomorrow. This test will tell us for sure if there are any blockages or any other issues in there. We asked them to do the study 2 weeks ago but the surgeons said if they did the test and he DOES have a hole in the intestines that it will cause him many more issues when the 'ink' goes out of the hole.. but unfortunately that is all we can do at this point. We are just praying that it goes well and shows no problems so they can turn their attention to figuring out the other causes of the infection he has been fighting. We had a great nurse today, Kayla that he has alot and we've requested to have her whenever she is on. She LOVES Lincoln and gets very emotional when things go wrong with him so he REALLY upset her today! I was 'kangarooing' Lincoln for about 2.5 hours when he kept lifting his entire chest and head off me and trying either to turn his head or go for a walk.. not sure which.. the problem is by doing that he 'extubated' himself!! That means he pulled his vent tube out and stopped breathing! It was horrible and terrifying.. it was a mad rush for Kayla to get him out of my shirt and back into his bed while the doctors, respiratory techs, nnp's and nurses ran in to resuscitate him.. it was about a 15 minute ordeal but he is fine now. Cole was there so he was traumatized right along with us... apparently it's a fairly common thing when these little ones get stronger and more active.. but it definitely scared us all to death! The doctor just laughed at how feisty he is and wasn't concerned knowing that he seems to be able to conquer pretty much anything!

Our Little Fighter!

Little LIncoln is still fighting! He is stable and comfortable. He is much much more swollen than yesterday so it was difficult for him to open his eyes tonight but he tried. He had a large amount of blood in his diapers today and they aren't sure why he is so swollen. A different doctor was on today and we met with her. She said she is very concerned about Lincoln seeming to be in a little more pain today and also with the blood in the diapers. She suggested we call the surgeon and have him checked. The surgeon on duty today is also the one that specializes in NEC and is very experienced. She told us that she will not attempt surgery on Lincoln. She said he is already left with very little small intestine from the last surgery and would not be able to survive if he lost any more intestine. She told us the only option we have is to watch him and keep him comfortable.. so that's what we are doing. We did not get to do his baptism today due to the different exams and tests they were doing but we hope to do that tomorrow. Hope is not lost for little Lincoln...

Such a Good Boy..

Lincoln is stable... his stats are all ok right now and the bleeding into his diaper has diminished a little. Unfortunately that does not mean he is getting better. The doctors know there is nothing they can do at this point but watch him and keep him comfortable. We are having him baptized tomorrow. He has a wonderful caring nurse taking care of him today and many other times, and that makes us feel very happy. She actually dressed him early this morning for the first time.. she had him in a tshirt that said 'I'm the little brother' and cute pants... it was before we got there so we didn't get to see it but she did take a bunch of adorable pictures of him dressed and holding onto the little stuffed animals we have there with him. He had just gotten his morphine though so he didn't wake up but we were so happy and grateful that she did that for us... she said she isn't done yet so we are looking forwad to seeing more adorable pictures. She said if we have anything special we want him to wear in to bring it in and she will get more pictures for us... I am going to go to Polaris early in the morning to search for a nice preemie outfit for him to wear for his baptism. He is THE cutest baby and THE best-natured sweet little boy in the world!! We are torn apart by what has happened to him and we are going to treasure every minute we have with him and give him all the love in world. He can have visitors so if any of you want to visit him just let us know.. We are living in the camper at Cardinal Center in Marengo.. we got everything to work except the kitchen sink so we are all set.... and of course Cole loves it here!

Our Precious Boy

I know everyone is wondering what is happening with our beautiful little son... we just haven't wanted to post anything since all we have is bad news. We met with our surgeon and doctors and unfortunately Lincoln's intestines are very damaged. He continues to require transfusions of platelets/blood/plasma to assist his little body in fighting off this infection. He is also still bleeding into his diaper which is a very bad sign. Obviously the 4 antibiotics they've tried for the last 17 days have not fixed this. The fact that this is his second battle against NEC and he has lost so much intestine already just makes it that much worse. The course of action now will be to administer to him the 2 new antibiotics. They have placed him on morphine to ensure he is not in any pain whatsoever. We did not go to work today and I will be off tomorrow as we know we need to be with our precious son as much as we can. We found a campground in Marengo that is only 30 minutes from the hospital.. we are going to take the camper there tomorrow and stay there so we are closer to Lincoln. Unfortunately the fridge and toilet both seem to have malfunctioned over the winter so we are a little concerned about that. Greg is going to spend the morning trying to get those things fixed while I go to Columbus. We are so thankful that we work for such a caring and accomodating school district that is allowing me to be flexible in my schedule while offering us so much friendship and support along the way. Lincoln has surely shown us what is important in this world...

NEC update.. again

Lincoln is still very very sick... his NEC has progressed and he is having blood in his diaper and continues to need platelet and blood transfusions all the time... although he hasn't had any more abnormal cells since last week... our new Dr. and surgeon believe he has dead intestine somewhere in his body and are very concerned. The problem is that they do not know if they will be able to do another surgery on him... we are meeting with the dr.'s and surgeon tomorrow afternoon to see what they can do to help Lincoln. His new head ultrasound showed no changes. His stats are all decent which is another good point. We put a little black, white, and red cow in his isolette facing him and he stared at it for quite a while tonight.. it was funny... he has a buddy to keep him company now :)!