Lincoln is 8 weeks old today!

Little Lincoln is doing ok... he got 2 blood transfusions and a platelet transfusion yesterday.. they just can't get his blood and platelet levels to stabilize... he will likely need a new platelet transfusion tonight since they were back down to 31 at noon... anything under 50 is severe and in his case they transfuse him anytime they hit 20 or below... they do more labs at midnight and we are sure they will be back below 20. Other than that he is doing ok.. still has the unknown infection and the NEC in his intestines... although it does look much better! He has now been on the Amphotericin B since Saturday.. hopefully it solves the blood/platelet problem and kills the unknown infection so he can get back to eating and growing! He is very very swollen from all the fluids and blood he has been given so he looks like a big chubby boy!! He's adorable! He was sucking on his tiny thumb when we got there yesterday... soooo cute! Of course his right arm is still pinned down to keep him from pulling out the A-line in it.. that is a line that goes in his right wrist and up into his heart to give him fluids and medications without needing to constantly be doing iv's.. although he also has several iv's still. They are considering taking him off the ventilator and placing him back on cpap so that would be good.. and we would be able to hold him again! Only negative is that we will no longer be able to see his head and face since he will have the hat and tubes on again... Still no clarification on the abnormal 'blast cells'... I asked his NNP how many he has and she said he had a 'blast' on April 29 (news to us!!) and another on May 28 but none since.. she also said he has other 'abnormal' immature white blood cells (several different names she gave me of each) that have appeared but not every time.. then today they got his platelet count back and discovered he also has 'giant platelets'... ??? we googled and are still confused by what that means! We waited several hours today to talk to his new physician but due to other emergencies occurring we were unable to see him.. We will be able to talk to him tomorrow... We did notice today that his heart rate was low and also his temperature... hopefully that is no big deal but I guess we won't know anything until we call after rounds tomorrow morning... Considering Lincoln has had at least 35 blood and 35 platelet transfusions we now understand the importance of donating blood.. so if you ever have the opportunity please donate! We also want to tell everyone that has left comments that we read them every day and we really appreciate them all!!

Are you Freaking Serious????

Well.. from our title you probably sense something unexpected popped up today.. if so, you are correct!!! We've talked about how Lincoln's infection is still unknown and the Infectious Disease doctors have been looking at him.. well today we found out that his platelets are still continuing to drop drastically without any known cause. At midnight last night they were 56.... and at the noon testing today they were 25.. the problem is that they should not be dropping at all... he just had a new platelet transfusion two days ago yet they cannot get high and stay high.. knowing this the NNP told us that he has completed his 10 days of the 3 broad spectrum antibiotics and is still having the serious issues with his platelets and low blood.. he is at the point of needing yet another blood transfusion today but they are holding off for now since they do not want to pump any more liquids into him... so knowing this.. they tell us they are going to start him back on Amphotericin B.. this is the very strong antibiotic he was on for over 30 days and JUST finished.. so now we are restarting it... ??? Very confusing. They also mentioned that he has e-coli in his breathing tube (this is round 3 of e-coli for him) and a 'bactierial infection' at is t-tube sight. But they aren't worried considering the extreme dosage of antibiotics he has been on.. so the KICKER is.. if this new antibiotic doesn't get it then they will call in the Oncology department.. so, having done my OWN research I knew already that the lack of balance and issues with his blood could possibly be related to Leukemia.. I asked our NNP and she agreed... this is why they mentioned Oncology... they have been unable to figure out his infection and blood issues and mentioned something about 'blast cell's' he has. So that is our latest shock! The fact that the Neonatolgists and Infectious Disease doctors can't figure this out is worrisome.. It's just crazy that our little adorable perfect boy is being tried like this in his little life.. what does give us hope is his strong will and gentle nature... he is the miracle boy in our eyes and we fall more in love with him every day.........................

Comments are appreciated!!!!

Mystery illness...

Linc is hanging in there! I just got home from visiting him at the hospital.... Greg stayed home to take Cole to his ball game, they lost by 1 but did a great job! No real changes in Lincoln's health.. he is still having drastic drops in his blood platelet count and getting transfusions.. it was back down to 19 last night but after his transfusion it made it up to 56 at noon.. (150 is the lowest normal count) he gets another check at midnight. Due to this unusual issue with his platelets the Infectious Disease doctors are checking him. I met one of them tonight and he stated that the cause of Lincoln's serious infection and NEC are still unknown. He has been on 3 very strong antibiotics for 10 days and they seem to have partially helped him but he still has the 'mystery' infection. The area of his intestines with the fixed loop is still showing on xray but is a little better than last week. So they have noooo idea what his status is!!! It's very frustrating!! They are consulting with the Neonatoligists and Surgeons to come up with a new plan to try and kill the infection by changing his antibiotics or the dosage. He is completely off his pain meds so he was more alert.. still very very swollen and puffy from edema but looking better. The NNP said he is responsive and she can tell he is able to focus on objects with his eyes and wakes up when they touch him... those are all good things.. he also loves to suck on his pacifier... it amazes me how he is able to suck on it with 2 different tubes going down his throat but he somehow manages!! We had a great new nurse Julie tonight that was wonderful.. hope to have her very often! We are hoping to only work half of the day tomorrow so we can get to Columbus in time to meet Lincoln's Physical Therapist and consult with his doctors... He is actually looking and acting much better.. they just need to figure out what is killing his platelets and causing his sickness..

Miracle Boy!!

Lincoln is doing well today! His abdomen is no longer as red and doesn't seem as sensitive. His xrays remain unchanged but not getting any worse. They adjusted his medications today to switch out one of the antibiotics and try a new one. He is keeping his stats all stable and looks much better. Dr. Luce said he looks and acts much better but is still sick... although it appears we are out of the danger zone... hopefully! They are only going to do xrays once a day now and continue to monitor him. He had a new eye exam but the blood vessels are still too immature to check for ROP but the dr. said that everything was normal. We've determined that he is indestructible!!! Everyone is amazed by him in the NICU. One of his little tiny neighbors passed away today though.. so that was very sad.. pretty sure it was something to do with her lungs.. she was only 500 grams (17 ounces) when she got to the NICU. She had been in there with Lincoln for about 3 weeks :( . Rescue was on the way to West Virginia to pick up a new very sick baby to move in today so he will have a new neighbor. It's amazing the number of micro-preemies that get admitted to the NICU every week... Lincoln has been in there longer than any of the other ones so we feel like the resident experts!

NEC day 7...

Lincoln is still fighting NEC. But the nurse does think his stomach may look a little better today so that is good. His platelet count was down to 17 last night and he had another transfusion. This morning they are up to 70. We still have no answers and his xrays are staying the same. No one can tell us anything other than to wait and see. We didn't even get to see a doctor yesterday but did speak to the NNP for a minute... they have no idea if the NEC will go away or when or if any intestines are damaged or dead. They just monitor him and wait. His potassium continues to drop down dangerously low so he got another bolus of potassium along with his platelets last night. He is definitely proving how strong he is by fighting this off!

Quick Udate on Lincoln's NEC...

Lincoln is still very very sick. He has been on antibiotics and iv nutrition since Tuesday morning but the pneumatosis and NEC are not going away. He gets xrays every 12 hours to see if the air pockets (fixed loop) is going away but as of 6am it is the same. He is more stable on the ventilator though, his oxygen level is 21 which is the same as room air so that is good! He was stable overnight. He is very lethargic which is due to his sickness and also his fentanyl (pain meds) could be contributing. We are going to stay in a hotel near the hospital tonight so we will be close by if they need us overnight. He has had extremely low potassium levels the last few days and keeps getting bolus's (an injection of medication) of potassium and many many blood transfusions and platelet transfusions since his platelets have also been very low. Normal platelet count for a preemie is 150 and his was 13 yesterday. After his platelet transfusion last night it was 50 and this morning it was down to 40. They say it is due to the NEC. We are anxious to see a Doctor today and try to get more answers. We will update the blog as soon as we get any new information.

Hercules!

We spent the day with Lincoln, waiting on test results and xray results. Unfortunately they had to place him back on the ventilator. He was having many "spells" and his swollen stomach was pressing on his lungs causing decreased lung volume. Once he was re-intubated his color improved and he was able to rest some since he no longer had to work so hard to breathe. It's such a disappointment since he had been doing sooo well breathing at room air on his cpap. The only positive to it is that we can finally see his beautiful little head and face again without the hat and cpap tubes. He is so handsome and has grown so much since the last time! He gets new xrays every 6 hours to check the status of the 'pneumatosis' meaning the gas bubbles in his intestines that caused NEC. The latest one showed no change.. no improvement but also not getting worse. We were hoping that he would be showing improvement by now but no such luck! He has some blood where he shouldn't so that is another concern but they are watching it. They tried several times today to insert an 'arterial line' which is a tube that goes through a foot or hand and up into his heart. This would alleviate the need to constantly be pricking his heels or arms to draw blood... but they were not successful in their attempts,, they will keep trying... I asked for them to give him a medication for his pain as it was obvious by his grimaces that he was hurting.. they now have him on drip of pain meds and he seemed much more comfortable when we left. Lincoln is such a strong little boy and we are so proud of him for his strength and feistiness! Cole leaves for California tomorrow with Grandma and Grandpa Elswick. We hope he will have a fun and relaxing vacation and not have the worries of home. He gets to visit with his adorable little cousin Isabel and is very excited! We hope next year we will be the ones taking him to visit along with his little brother Lincoln! One thing that did make us smile today was remembering how when we found out we were having a boy we convinced Cole we were naming him either McLovin or Hercules! With the strength and endurance Lincoln has shown maybe Hercules would've been perfect :)! The next few days are going to be very hard as we wait and see the course this new bout of NEC will take but we do know our little boy is a very strong and determined guy that has really shown us what is important in this world...

NEC strikes again!

It was our second day back to work today and things had been going very well for little Lincoln. Unfortunately we received a phone call at work from a surgeon at Children's around 10 am that he has a very serious infection. What was so shocking and disturbing to us is that it happens to be the same horrible problem he developed a month ago: NEC, necrotizing enterocolitis. This condition only affects 5% of preemies and of those only 5% of them need surgery. Well, we were in that teeny percentage of the ones needing surgery. Luckily Lincoln survived it but he did lose 27cm of his small intestine. The chances of NEC striking the same kid twice is extremely rare, almost unheard of. Today we found out he has it AGAIN!!!!! It has not caused a hole in his intestines yet and they have started him on 3 very strong antibiotics to try and stop it from progressing. We viewed the xrays with the doctor and can see the large air pockets in his intestines. They will continue to xray him every 6 hours to check the status and we just pray it will be cured by medication. The scary thing is that NEC progresses so quickly and is so destructive. They had to stop his feedings again and he will be fed through the iv by TPN. He was very very sick today and caused a big scare to the nurses and doctors but seemed to have improved tonight after his blood transfusion and having a tube inserted into his stomach to suck the air out of it. What we do know is that Lincoln is a very strong little boy and has already fought through so many awful things so we have hope that he will conquer this again! As for Greg and I going to work tomorrow, I am doubtful. Lincoln has made his point that he wants his mom and dad with him all day again!

He's Growing!

Lincoln Day 2.. April 6, 2009 Dad's ring on his arm

Lincoln.. picture taken Day 37... Dad's ring doesn't fit anymore!

It's Monday again but this time no bad news! It was a very long day for us as we both went back to work and then drove to Columbus to be with Lincoln, but at least it was a good day for him. Lincoln had his first ROP eye exam... actually we are a little confused since it listed all things with the eyes as normal but that the test was inconclusive for ROP due to his vessels being still immature and therefore hazy. ROP is the main cause of blindness in children and is very very common among preemies. The good thing about it is that is almost always treatable. I think the percentage of preemies his size that get it is approximately 60%. Maybe this time we will be in that other 40! Sooo.. they will repeat the test NEXT Monday.. he did have a new kidney ultrasound today and it came back normal. His feedings are still going well but his hemoglobin is borderline so it is likely he will need another blood transfusion very soon. The nurse said this is very common with preemies and especially since he has had so many blood tests ran lately to check the e-coli. He lifted and turned his head many times while we were kangarooing and was very active.. it was adorable! Of course he quickly fell sound asleep and stayed that way until he was pried off me by the nurse.. it was very hectic in the Small Baby Pod tonight since they had 2 new patients arrive. It's always sad when you see that since you know they were probably sent there due to a complication. His weight last night was 2lbs 7oz so he is gaining finally!!

Making progress!

Lincoln is doing very well! He is over 13" long and is 2lbs 5oz now. The surgeons have decided to change his feedings to a formula called Pregestimil to help him get all the nutrients he needs due to his intestinal surgery. We spoke to the surgeon yesterday and he plans to do the reattachment surgery in 4-6 weeks as long as Lincoln continues to be stable and grow. He has been doing exceptionally well with his breathing and his pressure reading on the cpap is being reduced tomorrow. He is still breathing at room air (21%). Once he proves he can handle the reduction in pressure it is likely he will finally get the cpap removed and have just a nasal cannula... that will be sooo wonderful! The 'Small Baby Pod" that he is in now is at full capacity so as soon as a new tiny one needs to be admitted the most stable baby in the pod will graduate to the bigger pod. At this time Lincoln and his neighbor are the most stable so it is possible he will get to transfer! That will be great since this pod is much more active, with baby swings, bouncy seats, some open cribs, etc... His urine culture came back negative last night meaning the e-coli is gone. He also finally gets his last dose of Amphotericin B tomorrow (the very strong medication he has been on for over a month to combat the fungal sepsis infection he developed due to NEC). This will be a big week for him since he gets his first eye exam tomorrow to check for ROP (a very common eye issue most preemies have) and a new head ultrasound thursday to check his ventricle size. We did find out today that he is no longer considered to have Hydrocephalus! That is great news! Most preemies with level 3 or 4 brain bleeds end up with Hydrocephalus and shunts but his head size has not increased and he is showing no signs so he is lucky! This means his body was able to drain the blood from the bleed without clots forming which block the flow and cause swelling in the head and pressure on the brain... so we are very happy.. .the new ultrasound will show if there is any change also. Greg and I have to go back to work tomorrow :( but I plan to work part time so I can still spend as much time as possible with Lincoln.

Lincoln day 38!

I have been doing so much research on brain bleeds in preemies and have been so worried about it that I finally asked our new doctor to please explain to me precisely what we are dealing with. Part of me was too afraid to ask because I didn't want to hear any more bad news...well.. it was good news this time! She pulled them up on the computer screen so we could see the actual brain images and explained it all to us. Apparently the right side is a grade 3 ivh and not a grade 4 ivh as we were told when we first found out. This was WONDERFUL news to hear! She also showed us the area that sustained the damage and explained that it is actually a very small area... it could've been sooo much worse. Only time will tell if there is any permanent damage but if there is we know it won't be nearly as bad as we thought. We are so glad we finally asked! More good news is that his brain has not had any unresolved swelling issues requiring a shunt and she doesn't expect him to need one. It is still possible, which is why they measure it daily but it is unlikely. We held Lincoln for about 3 hours today and he loved it.. he has been doing great on his cpap and is staying at 21% which is at room air.. his feedings are still going well also.

Tipping the Scales!!

Today a record was set in the Children's NICU... the King of the J4 Small Baby NICU, a.k.a Lincoln Rossman made it over 2 pounds!!! He is officially 2lbs 1/2oz as of last night! Yay! Along with the weight gain are his ever-growing big boy cries we get to hear! We love it! Unfortunately he has a new infection in his urine: e-coli.. but they are treating it with antibiotics again and it hasn't entered his blood stream yet so that is good... Held him for about 3 hours today and did very well.. no de-sats, no bradycardia's, he was sooo content.. putting him back in his isolette made him very angry.. he was kicking and fighting his nurse.. soo funny... Feedings are going very well so far too.. they increase the feeding by .5cc's every other day so tomorrow it will go up again. He got to see Grandma and Grandpa Rossman this weekend and he now understands why his feet and hands are sooo large.. 6'5" 275 lbs is just around the corner for little Linc! Good thing Mom loves to cook!

Feedings are going great! They started Lincoln out on .5ml per hour continuous feedings on Friday and today they increased it to 1ml per hour! He is taking to the feedings very well so far.. which was a very big concern for us, so we are relieved. Greg is going back to work on Monday but I am unsure of my own plans...

Feedings, Round two!

Great news tonight! The study done on Lincoln's intestinal (NEC) surgery was done today and everything looks great! They have already begun feedings through his stomach tube tonight.. They are starting out with him on continuous feeds... this is great news as they can finally get him off the TPN (nutrtition through an IV that eventually damages the liver). Now we just watch his progress and hope he takes to the feedings well.. No new changes today.. he is doing well... I held him for a couple hours and he was very comfortable.. We were shocked to hear of yet another friend of ours having a micro-preemie! A friend of Greg's wife had their baby at 26 weeks Monday.. she only weighed 1 lb 2 oz... but so far she is doing very well and is at OSU. So now we have our little guy, Cassy's new nephew (born at 26 weeks and at Children's also), and Greg's friends little girl. Feels like an epidemic! Please keep these 3 little ones in your thoughts and prayers.. what a playgroup they will be some day!!!

Day 31

Lincoln's head ultrasound was good yesterday. The bleeding has stopped, no new changes. They will continue to watch head size and will repeat it in 2 weeks.... so that was good news! We have a new doctor (they rotate monthly) and I really like her.. Dr. Rachel Brown. She is very honest and thorough.. she also gave us alot of hope and optimism for Lincoln's future... she says these kids turn out just fine in many cases or with minor issues... only time will tell but nothing gives her an indication that he will have a bad outcome.. He continues to be a feisty tiny little guy... he was not happy when we were transferring him from his isolette to me and had to adjust his cpap.. he cried (loudly!) and lifted his head off me and almost got it turned.. that's not an easy thing to do when you are barely 2 lbs and have a ton of tubes and wires tying you to a pole...haha! He grabbed onto my necklace today and held onto it for a while.. and of course, it IS my LUCKY cross necklace.. that's just his way of telling us he is JUST fine and quit freaking out :)... the study on his intestinal surgery recovery is tomorrow.. we are hopeful that it shows it is healed and ready for feeding.. We stopped at Babies'R'Us tonight.. the first time we've done any real shopping since he was born.. we found one cute preemie sleeper with frog feet! Greg and I were discussing tonight how grateful we are to everyone for their well wishes, prayers, gas cards, gift cards, money, food, and friendship.. it's been very hard for us and we truly appreciate the support of our friends, coworkers, and family!

Nurse Smackdown!

Mr. Lincoln has some strong opinions on who changes his mini-diapy and suctions his mouth out everyday. He has decided which nurses he likes and which nurses he exhausts himself trying to beat down every shift. THAT is a funny sight! Yesterday was a 'bad nurse' day and today was a 'good nurse' day... this is evident by his stats and behavior... today he was very content and actually breathing at 20% which is room air and very very good.. his stats were also very good. He does have a new brain scan in the morning.. we don't anticipate anything negative but this whole process is a complete baffling mystery sometimes so you never know... all we can do is hope and pray for him... We have honored his wishes and submitted a list of nurses he likes so he can have a more peaceful and comforting stay in the NICU. Visitors are allowed at this time... just let us know in advance to be sure we are there.. it's getting more difficult juggling home life, hospital visits, Cole's ball games, lawn care, appointments, laundry, and everything else daily life requires.

Little Guy

Lincoln is doing well... His newest kidney ultrasound was great.. the infection is gone and they are normal size. He is still active and quite feisty... he did NOT like his nurse today.. and I have to agree with him! He is finally around 2 lbs... Every day is a rollercoaster... but he is hanging in there and we know he will turn out just fine!