Saturday, December 30, 2006

In Memory of Robert Sterling U.

Wednesday morning we received a phone call that my Grandpa Bob had passed away suddenly in his home. He had been diagnosed with lung cancer 6 weeks ago and was undergoing chemo and radiation treatments for the past 3 weeks. His doctors had given him 12 months to live but he had not told any family this because he didn't want to worry us all. The morning of the 27th the tumor in his left lung caused his aorta to rupture. I'm thankful he didn't have to go through the pain and procedures of the next 12 months dying from lung cancer and was able to die peacefully in his home. But, it was so sudden. It has been a very hard week.

My Grandpa Bob was a wonderful man who always had a hug and a smile for everyone. He loved his sweets and sharing them. God gave him the amazing ability to paint even though he never had a formal painting lesson in his lifetime. Grandpa loved going to auctions and buying canvases and frames to take home and paint scenes for everyone to enjoy. His paintings hang on the walls of our home and are some of my most treasured possessions.

Yesterday was the showing and this morning was the funeral service. So many people loved and cared for Grandpa Bob that they had to add seating at both. I wish I would have been able to see him one last time at Christmas to hug him and tell him how much I loved him. I hope he knows. My Dad and uncle thankfully were able to spend quite a few hours with Grandpa on Christmas Eve which I'm sure is priceless time now. Remember to tell your loved ones how much they mean to you.

Rest in Peace Grandpa Bob
May 2, 1928 to December 27, 2006

Only the Best

A heart of gold stopped beating
Two shining eyes at rest,
God broke our hearts to prove
He only takes the best.
God knows you had to leave us,
But you did not go alone,
For part of us went with you
The day He took you home.
To some you are forgotten,
To others just a part of the past.
But to us who loved and lost you,
The memory will always last.

Saturday, December 23, 2006

18 Month Appointment

Eli went for his 18 month appointment on Wednesday. Boy is he a chunk a monk!! Since I haven't been able to pick him up for a month, I couldn't guess how much he was going to weigh....I was shocked to say the least. He has been at my parents house for most days and my mom loves to stuff Eli full of food and it must be working. My teeny tiny micropreemie who was diagnosed as failure to thrive and weighed only 14 pounds a short 5 months ago was an amazing 24lbs even!!!! No wonder he looks so healthy. He is also 32" tall. My boy is growing....hooray!! If you would have told me 5 months ago that Eli would have these measurements at his 18 month appointment I would have laughed in your face. God works in mysterious ways. Thank God for Eli's MIC-key button, Nissen fundoplication surgery, Peptamen Jr formula, and a Gigi who loves to stuff more than 3,000 calories per day into her second grandson.

Whew, sorry, I had to start off with the best news of the whole appointment. I was busting at the seams waiting to brag about my BIG micropreemie! Now on to the less joyous points from the date with Dr. Pediatrician....

Eli's two incisions from his big surgery are healing well but he will have pretty noticeable scars once again. He is a map of scars all over his body so when the teenage years hit he will be able to create quite a bit of bragging stories to tell all of his friends (and maybe a few girlfriends!). His MIC-key button site looks pretty good with only a little bit of drainage and irritation. Al and I will need to switch it out for a new one in the next week. No biggie though, Eli just lays there still as dead man while we take out the old one and insert the new one. This boy is amazing.

Next up were the ears, nose, and throat. Unfortunately Eli seems to have a pretty bad double ear infection which bad mommy didn't notice at all. I guess that is one of the downfalls of having such a happy never know when they are hurting. Eli has shown no real signs of an ear infection at all. He is now on a 10 day course of Augmenten due to the double ear infection and enlarged tonsils. Luckily his nose looked good!

On to the of the worst body systems for poor micropreemie Eli. His BPD (basically preemie lung disease) is still not completely healed so Eli's lungs are compromised and he doesn't oxygenate as well as a normal child would. In addition to his BPD, Eli has the added respiratory risk of aspiration of thin liquids into his lungs. This all equals bad lungs and almost constant wheezing for our poor little man. He has been using Albuterol about 4 days out of the week minimum for the past month and a half for his wheezing. His pediatrician finally diagnosed him with asthma and started him on Flovent twice a day to help with his wheezing and chronic need for Albuterol. Now Carson and Eli are both on Flovent BID for their asthma (although Carson is on two other meds and his asthma seems worse than Eli).

His heart was perfect as always. His eyes are nearsighted and being followed by his opthamologist and he will need glasses within the next 1.5 years. Developmentally he is on target for his adjusted age of 14.5 months with speech being between his adjusted and actual age. For feeding we are still using his MIC-key button for extra calories at night and for venting during the day since he can't burp due to his Nissen fundoplication surgery. He is to remain on Peptamen Jr formula since he still seems sensitive to dairy products and needs the elemental formula with 30cal/oz. He is on a wide variety of table foods but we need to head back to the feeding clinic for more therapy in addition to his regular OT/feeding therapy if his extreme texture aversions to all meat doesn't improve in the next month or so. He is still aspirating on thin liquids for no apparent reason.

We are still carefully watching Eli for cerebral palsy. He is becoming increasingly more clumsy and falling a lot. This can be a sign of mild CP and the neonatal clinic told us to watch for it in the coming months. Eli's ankles are very loose which is a good sign in terms of CP but his hips and shoulders are still quite tight (hypertonic) and with his gestational age being 25 weeks at birth, he is at high risk for some degree of cerebral palsy. We will continue to follow his progress in addition to his PT/OT and the neonatal clinic down at Children's Hospital to ensure Eli is getting the best possible care for his needs but Eli's progess is nothing short of amazing.

BUT.... to top off the whole appointment.......the words every micropreemie parents longs to hear......drum roll please.....

"I don't think most people would think he was a micropreemie just by looking at him unless they saw his scars or listened to his lungs!" -- Dr. Pediatrician!

Monday, December 18, 2006

My first preschool gift

Carson jumped off the bus this afternoon beaming from ear to ear. His backpack contained a priceless package that he had worked on for a few weeks in class.....a Christmas present for Mommy and Daddy. We walked home from the bus stop and I immediately grabbed up the camera. He proudly took the carefully wrapped package out of his Spiderman backpack and handed it to me. Of course Carson got a big Mommy hug in return and a few sloppy kisses to go along with it. I couldn't help myself and photographer Mommy kicked into gear. Carson kept saying, "Mommy, just open it....please!". I just wanted to make sure I had recorded all of the details of our first homemade preschool Christmas present in digital picture history.

Thankfully Al was off of work today and was able to enjoy the moment with us. Carson was so excited to see us open his present that he practically opened it himself. Inside the colorful paper tied with red yarn string was a wall hanging displaying a reindeer. Now this wasn't just any reindeer. It was made from Carson's right foot print and both hand prints. His huge smile and two dimples showed us how proud he was of his creation and we praised and thanked him for our perfect gift. Who could ask for a better Christmas present??

Sunday, December 17, 2006

Half-Year Day?

Happy 18 month mark Eli!! I can't believe how big you are getting right before our eyes. You continue to amaze us and everyone around us. Not only were you only given a 30-35% chance of survival based on being a 25 weeker, being septic at birth, and needing resuscitation in the delivery room, you have overcome so many other "odds" that so many people doubted you on. You are our second little miracle and this Christmas is going to be wonderful watching you tear into presents with reckless abandon while you babble away all the time knowing that you were never supposed to do any of it. Kisses and hugs to our little man.

Happy 3 and a half mark Carson! Boy is three and a half different than two and a half or even three. You are independent yet clingy all in the same ten minutes. You know what you like and don't like and aren't afraid to let anyone know about it. Your adorable personality and sense of humor grows stronger everyday. Watching you throw yourself into learning about the world around is what it is all about. Christmas in our house has been an adventure this year so far and I can't wait to experience all of the excitement and anticipation of Santa and Christmas lights and cookies and carols with you in the coming 8 days. Giant Carson squeeze our guts out hugs to our big man.

Happy Half-Year Day Boys! We love you!

Thursday, December 14, 2006

The things kids say...

This afternoon I was trying to tell Carson about his girlfriend's dog who passed away this week. Carson loved this dog and he lived right next door to Gigi and Bobpop (my parents). This is how the conversation went.

K: Carson, K--- went up to live in doggie heaven this week.

C: I know Mom. Just like Aunt Tina's dog Meeko.

K: That's right Carson. Just like Meeko. K--- and Meeko are playing together up in doggie heaven right now.

C: Why did they go to doggie heaven?

K: Because they got old and now they are not here with us anymore.

C: Oh..... soon Eli will get old too, right??!!

I tried hard not to laugh but as you can see, the loving relationship between my two boys still needs some growth!

Wednesday, December 13, 2006

2006 Christmas Card

I'm not sure if this is the final copy but after playing around for a few hours tonight in PSP, I'm exhausted and this is all my brain is giving me.....any advice??

I like it and think it might just work.

Tuesday, December 12, 2006

Is it May yet??

It looks like this winter will have a recurring theme.....sickness in our home. The preemie boys are at it again with croup, wheezing, and an all-over feeling of crappiness. Carson started on Sunday night saying his ear hurt and he didn't fall asleep all night until 5:20am. Yes, you read that correctly, I did say 5 in the morning. Then I had to be up at 6:30am for Eli's wake-up call. Good thing no camera crews were waiting for me outside my door. Carson missed school and earned an afternoon trip to the pediatrician instead. He has another raging ear infection ready to perforate in the same ear (his right) as last time and a moderate one in his left. His tonsils are also looking large as always. We now are on antibiotics for 6 straight weeks to see if we can control the bacterial growth from causing so much pain and damage to his ears. He also has an ENT appointment after the first of the year to schedule surgery to get his tonsils and adenoids out. If the ENT thinks his ears still look bad after 6 weeks of antibiotic treatment, they will most likely place tubes at the same time as the T&A surgery. Chalk one more surgery date up for our family.

Eli started with his croupy cough today and hasn't stopped hacking since. I'm praying that he is able to stay out of the hospital this time. His battle with croup a month ago landed him in Children's Hospital on the respiratory floor for a few days and I'm just not looking forward to that again. The good news is the steri strips came off his thigh incision today and it looks like it is healing well. He keeps pointing to both surgical sites and saying "owie" though so he is still getting Tylenol during the day and Tylenol with Codeine at night.

At least I'm building great med/surg nursing skills by caring for my children at home! Carson is now on eight daily medications but Eli is thankfully only on two. I just have Eli's MIC-key button cares, surgical site care, tube feeds, and therapies as 'nursing jobs'. Children's Hospital better hire me when I graduate and pass my NCLEX.

Sunday, December 10, 2006

Unprofessional Christmas Pics!

Anyone who has a 3.5 year old or an 18 month old knows how difficult it can be to get them to sit still for anything, let alone a picture sitting. So, instead of lugging both respiratory compromised boys to a studio and paying exorbitant amounts of money on pictures, I decided to try a photo shoot with my Dad's wonderful Nikon D50 camera since it usually gives us such beautiful pictures. Well...the camera behaved. The boys acted just as they are supposed to. Who wants to sit still and smile when there are Christmas decorations to look at and chocolate candies to steal and doggies to chase? After much prompting on my mother, father, and my part, we finally caught a few cute pictures of my precious preemies together and separate that will serve as our 2006 Christmas pics. Whew, am I ever tired!

Here is the big man himself in all of his smiling, blue-eyed glory

Next up Mr. Trouble Maker himself along w/ some Photoshopping for head injuries ;)

The miracle of my 30 wkr and 25wkr together and healthy!

Thursday, December 07, 2006

Short Eli update and Pictures

Eli seems to be doing wonderfully from his surgery on Monday. We are only having to use his Tylenol w/ Codeine sporadically if he does too much monkeying around. Yesterday he was pulling the cushions off the couch and then jumping up and down on the couch. Nothing holds this kid back. He must have been hungry Tuesday night in his crib however. When we woke him up for his 11pm dose of meds we found a large bloody gash on his forehead along with some chunks of wood chewed out of the side of his crib. He had baby safe paint chips around his mouth! OMG...he didn't even cry. I swear these boys are going to put me in the nut house.

Here are a few pics of Eli's battle wounds from surgery on Monday. They still have the bloody steri-strips on them so you can't see the actual incisions. The purple marker and arrows around his incisions were made by Dr. Groner prior to Eli being taken to the OR and won't come off for about another week. We received great news this morning when Dr. Balint called to tell us that the biopsies from Eli's endoscopy and colonoscopy all came back completely normal! YAY! It will be several more weeks before his muscle biopsy is back so we sit and wait all the while expecting (and crossing our fingers for) normal results as well.

For a brief update on me.....I'm doing too much for two weeks post-op. Today I accidentally lifted Eli about 1" off the ground. I'm living to regret it and am back to pain, swelling, and for the very first time since surgery....BLEEDING! I will call my ob in the morning to see if I need to come in to make sure I didn't royally screw myself over. The exhaustion is killing me and walking up and down the steps and wear me out for a good couple of hours. I am loosing weight like crazy despite eating well and am down to a size 2 in jeans. It's weird being this thin b/c I haven't seen numbers like this on the scale since middle school. Thanks again for all of the prayers and comments. You guys brighten my day and I love reading everyone's blogs when I'm up to sitting at the computer and not taking naps!

Wednesday, December 06, 2006

Santa Babies

Sunday evening before the mall closed (I know....gasp out there for all of the preemie moms but I had to do it quickly with lots of Purell!) we decided to take Carson and Eli to see Santa before Eli's big surgery. Carson had been asking about Santa for a few weeks and watched The Polar Express Saturday night before bedtime. Al dressed the boys in their matching blue jeans and light blue sweaters that Gigi bought them and off we went. The mall was not crowded at all since it was 20 minutes before closing on a Sunday night (see preemie moms....I did plan!). We waited in line for about 5 minutes behind a little wiener dog in a Christmas sweater and two older and somewhat bratty kids. Then it was our turn!

Carson was jazzed about the whole thing. He had his list planned out and ready to recite all of the toys he wanted for Christmas to the jolly bearded man sitting in the oversized display chair. Eli was completely oblivious to the whole process and continued to be so throughout everything. Carson hopped up on Santa's lap and rattled off his wish list and even added in a few things that Eli 'wanted' since "E-eye can't talk berry well yet". In his three and a half year old voice we heard, " and talking Bobs and even two train tables but mommy says you will only bring me one because I have to share with E-eye...". Oh if we only remembered the video camera. It is wonderful seeing the childhood joys of Christmas blossom in your children's eyes.

Next came the picture. Carson smiled big and proud because we coached him earlier in the day by saying that Santa loved little girls and boys who smiled big and showed their bright shiny teeth. Eli still sat there less than amused and more than confused about why mommy and daddy were standing ten feet away while he was sitting on a strange man's lap and everyone was saying, "Smile, say cheese, Eli....over here!". Eli then proceeded to lean over and reach for the ball on the end of Santa's hat and start pulling the hat off. It was priceless! He had found entertainment in this whole boring adventure. At least both boys are looking at the camera for the picture. Eli looks like a butterball turkey(he weighed 22lbs 6oz and was 31.5" at the hospital Monday!) and Carson is still a bit pale and oh so skinny but this is our official 2006 Santa and the boys picture.

Monday, December 04, 2006

We're Home!

That's right....Eli got to come home! The second part of his surgery was successful. Dr. Groner took the muscle biopsy out of his right thigh with about a 1.75" incision. He needed to open it back up after closure to get more muscle for an additional biopsy but he was able to use the same incision and not make a new cut. The incisional hernia was a bit more tricky. Since Eli has had three major abdominal surgeries in his life so far he has built up a lot of scar tissue on his abdomen. They went in and found extensive scar tissue with his abdominal muscles and his skin/scar tissue around the hernia. Dr. Groner had to do quite a bit of manipulation to separate the scar tissue in order to fix his incisional hernia completely. Consequently Eli will have a lot of bruising and soreness surrounding his abdominal incision and MIC-key button.

Although Eli had some desatting during surgery and was hanging in the mid-90s post-op, anesthesia felt that he was fine to come home and recover in a comfortable environment. His bandages are pretty bloody and he is in a lot of pain. Thank God for Tylenol with Codeine. We got home around 3:30 EST and after a hefty dose of meds and some rocking, Eli is fast asleep in his crib. Thanks for all of the prayers and well wishes. Hopefully the rest of recovery goes smoothly. He won't be able to walk for a few days to a week due to thigh incision and he seemed to have trouble sitting up post-op possibly from his abdominal incision or anesthesia. But, our little trooper has made it through yet another surgery in his short life and is still smiling.

Quick update #1

Eli's surgery was bumped up from 12 to 10 this morning. We were called at 8:25am by the hospital to come as soon as possible due to the change. Once we arrived around 9:10 Eli was taken back and prepped for surgery. He was a happy, smiley boy who flirted shamelessly with all of the staff. Dr. Groner and Dr. Balint both came in and spoke with us before they took him back. Then anesthesiology came back to discuss Eli's complicated medical history and respiratory problems. It is their call whether Eli will need to stay overnight after surgery or be able to come home after recovery with us. Eli's oxygen sats were only 95 in pre-op so they may be leaning towards keeping him based on those numbers and depending on how he tolerates the anesthesia, any respiratory complications with the vent, oxygen need, and desats/bradys.

Eli easily went to the anesthesiologist when it was time for surgery and was waving bye-bye to us as we walked down the hall to the surgical waiting room. What a happy boy! Dr. Balint (his GI) just came in to let us know that the endoscopy and colonoscopy both looked good. She took biopsies during both and we will have the results in 3-4 days. His Nissen fundoplication is still intact and look great. She thinks the patho will come back normal and that Eli may just be "one of those kids who once again are an anomaly". She is very happy with his recent weight gain compared to the skeletal Eli she saw at the last visit and so if the patho comes back normal, she will continue to monitor him but allow his calorie needs to dictate themselves. He may just be a huge piggy!

I'll update in about two hours once Dr. Groner is done with the invasive and ouchy part of the surgery.....keep him in your prayers.

Another Surgery Day for Eli

Today is Eli's big surgery date! We are to arrive at Children's Hospital by 10am for prep, IV, and a few breathing treatments pre-op. His OR is scheduled for 12 and both his general surgeon and his GI doctor will be performing surgeries on him. Eli is having an incisional hernia repaired that developed along the 5" abdominal scar from his Nissen fundoplication surgery in May. He is also having a muscle biopsy taken out of his right thigh (at least we think it will be the right and not the left) to test/rule out possible mitochondrial disorders. This would explain his extremely high caloric need for growth at around 3,000cal/day which is more than triple what is normally required of a child his size. Eli's entire GI track is also getting the works as well. His GI is doing an endoscopy and colonoscopy both complete with biopsies to see if they can finally get to the bottom of all of his GI issues for once.

Tonight has gone lovely so far with Eli's bowel prep for surgery. He has gotten senna through his MIC-key button in addition to 2 whole ounces of Milk of Magnesia in two split doses. The poor child has been a pooping machine all night and has been woken up twice for baths due to being covered in runny, watery poo. Sorry for the TMI but parents will understand. We are worried about how he is going to handle being taken away from all food and drink in the morning when he wakes up. If you know Eli, you know he eats 24/7 when he is awake. Keeping him NPO and NPg-tube until his surgery at 12 is going to be nothing short of miraculous. At least one of his late night baths tonight was just in time for his last meal before the 12am cutoff.

Check out the blog for updates from his surgery. We're praying that his wheezing and coughing will be under control and not cause problems with anesthesia and coming off of the vent post-op. Children's has computer access so hopefully I'll be able to post a quick update once he gets out of surgery around 2-2:30 (it should take about 2 hours or so). Thanks for all of the prayers and well we go again!

Saturday, December 02, 2006

Update on the Big Man

Thankfully Carson is feeling much better. We are now thinking that his lovely vomiting was caused by an adverse reaction to the Tylenol with Codeine. No one else in the house has any GI symptoms and Carson only threw up in a limited time frame (although it was in mass amounts!). I guess I should be knocking on wood that we all don't come down with some terrible gastrointestinal bug that makes everyone miserable. knock, knock, knock.

Yesterday Carson was designated my 'helper boy' and he stayed with me while my parents took Eli home with them. We had a wonderful day full of reading favorite books, talking about school and life and three year old things, napping together, and even some much needed TLC mommy-Carson time. He was better behaved yesterday than any day in the past six months. was just one of those days that reminds you why we as parents get up at 3, 4, and 5 in the morning without hesitation and don't complain (much) when being vomited or pooped on for years. His fever finally broke but he still said both ears hurt so we cuddled on a pillow with the heating pad some more! How could I pass up a chance to get my ADHD child that doesn't like to sit still to lay and cuddle and talk with Mommy?? Throughout my surgery, recovery, and his illness, that smile and those 'squeeze your guts out hugs' can relieve pain better than any perscription. I love my boys!

Friday, December 01, 2006

Three year old Throw up and Ear Infections

Hopefully from the title of this post you can tell how wonderful and relaxing the past two days have been in our household. Carson started crying completely out of the blue on Wednesday night and holding his ears. He asked for band aids to make them better. The night progressively got worse from there. Never in my history of parenting has an ear infection in either of my children presented so quickly or so violently. Motrin didn't help. Tylenol didn't help. Sleeping with Mommy and Daddy with a heating pad on the pillow sort of helped but not really. He also had a fever of 103. Needless to say, Mommy and Carson didn't sleep at all Wednesday night.

At 5am Carson started screaming and then yucky yellow, purulent drainage started flowing out of his right ear. He had perforated his typanic membrane. Can you say OUCH!! Carson kept saying, "Snot is coming out of my ear Mommy.....make it's hurting me!". Preschool was definitely out for Thursday so I called the bus department by 7am and the school to let them know Carson would be absent. Unfortunately Thursday is the only day our Pediatrician's office opens late. So we waited patiently while Carson lay in my bed and I tried to take care of him even though I was on Percocet and unable to pick him up or really move around well at all until 10am when the doctor's office opened. Whew. An appointment at 12:30.

Carson didn't move all morning. At all. For anyone who knows Carson, this is unheard of. Our child even moves and jumps and runs with pneumonia or a fever of 105.6 in the past. Thankfully my Mom was helpful as always and we were able to get him dressed and off to the pediatrician by 12:30. He lay motionless on the exam table and wouldn't even eat a blue Popsicle that his favorite nurse brought him! Our ped said he did perforate his right ear and his left ear is severely infected. Carson had also lost another pound of weight from his weight two weeks ago and is now 34lbs and 43" tall. Skinny boy. We left with a script for Omnicef and Tylenol w/ Codeine for the pain.

Then the vomiting started. Carson threw up the rest of the day. Projectile. All over me, the toys, the couch, the floor, etc. It was lovely. I just wanted a nap but "mommy mode" kicked in and I tried everything to make my baby feel better. He wouldn't take the Tylenol with Codeine because it tasted terrible (I don't blame him). He didn't eat or drink anything all day long. My poor boy. Today he is doing much better even though he says his ears still hurt. There are no more signs of throwing up thankfully. He's back to eating and drinking and playing with his toys. He even got a few pushes and shoves in at Eli for good measure. I am just praying that Eli and I stay far away from the GI bug Carson had because I can't imagine throwing up with my 8" incision and Eli can't throw up due to his Nissen fundoplication AND he has his big surgery on Monday morning! For now I'm heading back to the couch to try and recover and watch Carson play with his toys and act like my lovable three year old once again.