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 baby....you 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 lungs....one 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, "...tools 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 wishes......here 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. Awww...it 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 stop....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.

Tuesday, November 28, 2006

Ball, Bye-Bye, Up, Nose??

A switch has been flipped in our little Eli. The monkey went from having mature jargon and speech at a 9 month level a month ago to all of a sudden adding words at lightning speed. Sunday Eli learned that he could communicate and get what he wanted faster if he used words instead of screaming, grunting, pointing, or babbling. WOW. What a realization this was for him. He hasn't stopped since. This morning his speech therapist was blown away at the progress he had made. Debbie ended up evaluating him again since his skill level had changed so drastically from a month ago. After about 45 minutes of play and teaching, Eli tested and performed at a 15-18 month level.

If I wasn't so drugged up on Percocet and immobile from my hysterectomy I would have jumped for joy! Eli started clapping right on cue when Debbie was telling me how well he was doing and you could not find a more proud mom than me. All in all today Eli probably picked up about 10-12 new words including a few two-word phrases like "push here", "up please", and "bye-bye dog".

Going from only saying dada and dog three days ago to this new language explosion is such an exciting time. Most parents can't wait for their children to say those first few words or to learn new skills. Most parents also don't have a 25 weeker. Eli has beaten the odds and it is such a gift just to see him be able to learn to speak. Al and I didn't know if we would be able to watch him ever say his first words so these moments are even more sweet.

Sunday, November 26, 2006

Home and Sore

Surgery was a success! I'm happy to say that I am writing this post from the comforts of my own home in a brand new pair of fleece Victoria Secret pjs and out of the hospital. I was in the OR for almost 3 hours for them to repair my extensive adhesions which did end up involving my large bowel, bladder, ureters, uterus, tubes, colon, and abdominal wall. By the grace of God and the skill of my ob, I was able to save both of my ovaries so I am not thrown into immediate chemical menopause at the age of 23. This actually put a slight smile on my face in recovery even though my bp was very low, I was tachycardic in the 120s, and they busted my lip wide open while intubating me for anesthesia.

Post-op in the hospital was a lot harder than I expected it to be and I had many hurdles to jump with the after effects of anesthesia that I've never dealt with before. My bp wanted to stay low (around 80/40-50s) and my heartrate stayed in the 110-120s for about 6-8 hours post-op. I also had several pretty bad de-sats in recovery so I needed to stay on 2L of oxygen for 24 hours after surgery. I have a 8" incision that goes from hip bone to hip bone. They closed with sutures so I don't have to deal with staples and staple removal this time around. I was unable to stop throwing up for three days post-up even with ice chips so IV hydration and a fat lip from intubation was all I had in addition to dry heaving with a fresh incision and a migraine on day three. But, by day four I was ready to eat, not throwing up, no more headaches, onto oral narcotics, and having no more fevers! YAY! They discharged me. Too bad I got extremely sick on the way home and threw up right as walking in to the house. After a few Phenegan and some more Percocet I was knocked out well enough on the couch and woke up a few hours later to enjoy some football and being home with the two lovable, cuddly boys that I missed more than anything in the whole entire world.

Thank God for my in-laws and brother-in-law who came up from TN to help out with the boys. Carson and Eli had a wonderful time with them and I didn't have to worry about anything at home. My parents and little sister also helped out tremedously in helping to occupy the little monsters and cook a yummy Thanksgiving dinner that I unfortunately missed. I special thanks needs to be said to my Aunt Ty for all of her help with the boys the day of my surgery. I know what a handful the twin terrors can be and it was such a relief to know they were safe and happy here with you enjoying their special blue drinks, snacks, and "Aunt Ty" time. I'm am truly blessed to have such special, amazing family members. Thanksgiving is a time for thanks and the things I am constantly thankful and grateful for in my life are my two miracle boys and the endless support, love, and help that everyone in our family provides us. We would be lost without each and every one of you!

Now, back to the couch for more resting and more Percocet.

Tuesday, November 21, 2006

Surgery Day for Me

Well, the big day is upon me. It's after 11pm on Tuesday night and I'm getting a bit anxious about my surgery tomorrow morning. Al and I will leave for the hospital at 7:15 to be at the hospital by 8. My adhesion repair and total abdominal hysterectomy w/ possible BSO (ovary/tube removal) is scheduled for 9:30. It should take 2.5-3.5 hours depending on complications arising with my adhesions. They involve my large bowel, ureters, uterus, tubes, ovaries, abdominal wall, possible bladder, and possible colon. YIKES! Lots of serious complications can happen and I'm trying not to think of them right now. But at least I will finally be out of the constant pain and bleeding that I've had for the past year that has basically trapped me inside my own body.

So, if you are the praying type, please say a little prayer for me tomorrow morning that my surgery goes well and my 6-8 week recovery won't be too rough. I'm depressed about missing my favorite holiday but sometimes we just have to suck it up a bit. My in-laws are coming up from Tennessee for Thanksgiving and to help with the boys. My little sister will be home from college too. I think Al is starting to realize that he's going to be in charge of all the child care for the next 6 weeks and that is intimidating to say the least. Maybe I'll get a little more appreciation out of it though :)

Good news from this week.....I passed my nursing final with flying colors! Carson is still coughing his little head off (yes, this is in the good news section) but they think that it may be his asthma being WAY out of control causing the 3 month cough that won't quit! He's now on Flovent, Singulair, and Albuterol to try and calm things down. Cross your fingers that it works. Eli is getting better with the croup but has a nasty secondary infection he picked up at the hospital. Coughing with wheezing and a runny nose. Lovely. The good news is his g-button cultures came back negative so the spreading red area is just irritation from the extra discharge and acid draining from his cold. YAY....no IV antibiotics needed! So.....to wrap things up, surgery for me tomorrow, Carson getting massive asthma treatments, Eli has a secondary respiratory infection w/ wheezing but no g-button infection, and I nailed my nursing final! Whew....did I get threw it all??

Now, I only have to fall asleep and make it to the morning without being incredibly anxious, nervous, scared, and feeling like a little kid again before a major surgery in the morning. Wish me luck and send prayers!

Thursday, November 16, 2006

1 Tired Mommy + 2 Cute Sick Boys



I just love this picture even though it truly shows what an exhausting week we all have had. I'm still in my scrubs from clinical, Eli is sleepy, Carson is worn out, and it is definately time for a warm bath and a nice bed time story. It's great to finally have a picture of me and my boys (I think the last one of all three of us together was in the NICU) even if we all look a bit beat up!

Tuesday, November 14, 2006

Prematurity Awareness Day and an Update

November is Prematurity Awareness Month and November 14th is National Prematurity Awareness Day. The March of Dimes is constantly doing research to look for answers to prematurity in terms of prevention and how to help these tiny babies survive when preterm birth is inevitable. This year more than half a million babies will be born premature. Please stop by the March of Dimes and check out the astounding statistics on prematurity and it's impact. As a mother of two preemies, a 30 weeker and a 25 weeker, I completely understand the preemie experience. Unfortunately it's almost impossible to understand what a family goes through after a premature birth if you have never experienced one or been close to one. I'm going to 'borrow' a poem from a fellow micropreemie parent and blogger, Liz, to help explain the preemie experience a bit better (stick around b/c there is an Eli/Carson update after the poem!).

Eli at 2 days old on vent

The Preemie Experience

The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.

It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby's "bedside" day after day,
Week after week, month after month,
Alternating between the emotional high of "Look, her eyes are open," or "She's crying!"
And the lows of "I'm sorry, Mrs. Moore. Something has
Shown up in Lauren's ultrasound,"
Or even "There is nothing we can do ..."

It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child's heart rate keeps hitting zero.

It is watching children dying around you, wondering if
Your child will be next.
It is hearing your child's cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.
It is meeting other parents of children who are doing far better
And wondering, "Why me?"
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.

It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all ...

It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn't due for another three months!

It is thinking the nightmare is over ... only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie's ability to do so.

It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.

It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey...
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart ... to accept that, no matter what,
This child is yours,
And you will love this child no matter what.

-- Sandra D Moore


Carson at 2 days old on vent


This week our preemie experiences are hitting home even harder. Carson has been struggling more with his ADHD and SPD in the past few weeks. He hasn't been able to shake this croupy cough for the past three months and needed to go back to Children's Hospital urgent care on Thursday for epinephrine breathing treatments and some Decadron to help his breathing. Eli's BPD is being complicated by his continued aspiration. Carson then shared his latest round of croup with Eli and on Sunday Eli ended up being admitted to Children's Hospital in severe respiratory distress. He is finally home now but still having stidor and wheezing after needing oxygen, epinephrine/Albuterol/Atrovent, and many rounds of Decadron. We need to get his lungs in order in time for his big surgery on 12-4. The effects of prematurity (especially extreme prematurity) last far beyond the birth and NICU period. If anything at all, please don't ever say to a preemie parent, "But your child is fine and healthy now....their prematurity doesn't matter now". That is like a knife in their heart.

Wednesday, November 08, 2006

Costume pics

Halloween night was a cold and rainy fourty something degrees here in Ohio so the boys had many layers of clothing stuffed under their costumes. They had a wonderful time trick-or-treating around the neighboorhood. Carson and his little girlfriend who dressed up as Buzz Lightyear (he was Woody) had a blast shouting "Trick-or-Treat" at all the neighboorhood houses. Eli still didn't understand much at all but decided that pointing to things worked well for him. They both brought home a small bounty of candy and toys and went home for a warm bath, bedtime story, and bed. Does anyone else think the extra clothing under Eli's costume makes him look like the Stay-Puff Marshmellow Bee??? Hehehehe....enjoy the pictures!


Sitting on the porch waiting to trick-or-treat


A bee sneaking something sweet!



One serious Woody cowboy and an bee excited about pumpkins

Tuesday, October 31, 2006

Happy Halloween


We woke up this morning and realized our boys are growing up so quickly. I decided to take time to post a few comparision pictures from Halloween last year so everyone reading can see how much Carson and Eli have changing in the past 12 months. Carson has lost his baby cheeks and looks much more grown up. Eli is bigger, stronger, and much more interactive than the 4.5 month old we had last Halloween. I will post pictures later this week of the boys in their costumes from Trick-or-Treat night (if it stops raining here in time) but for now enjoy these four pictures from last year and this morning.

Carson last Halloween as a doggie

Today as Woody from Toy Story at his Preschool party

Eli last Halloween in our pumpkin candy basket

Eli this morning in the same 0-3m sweater and the same basket!

Random Mommy-Eli pic


This was taken two weekends ago at the campsite in Eastern Ohio where Gigi and Bobpop took Carson camping. Eli and I went up to visit on Saturday for a campfire and some good times with Grandma Helen, Papa Wes, Gigi, Bobpop, and Carson. It was 45 degrees and wet out after the sun went down so blankets and coffee were a must! Note the wet knees of Eli's pants from crawling around in the grass. Eli thought Grandma Helen's cane was a toy and played with it all night long much to Carson's annoyance. Carson kept telling Eli to "give Grandma Helen her 'pole' back". Priceless.

More camping photos to come.....

Friday, October 27, 2006

I'm It!! What are you reading???

Well, Laura tagged me today for this fun little meme so I must comply promptly or be outed as the procrastinator I truly am....

1. Grab the nearest book. If you are currently reading something, that'll be fine too.

2. Open the book to page 123.

3. Find the fifth sentence.

4. Post the text of the next 4 sentences on your Blog along with these instructions.

5. Don't you dare dig for that "cool" or "intellectual" book in your closet I know that is what you were thinking!

6. Tag 5 people


"He sat slouched in the camouflage jacket with Velcro closures, steeped happily in disaster. He talked about the snow, the traffic, the trudging people. He speculated on how far we were from the abandoned camp, what sort of primitive accommodations might be available there. I'd never heard him go on about something with such spirited enjoyment."

~ Don DeLillo, White Noise



I tag Billie, Jill, Amanda, Liz, and Christy
because I want to see if you guys are plagued with the procrastination curse as much as I am!!

Sunday, October 22, 2006

Beautiful Mature Jargon??

Eli had his first speech therapy session on Thursday. It went well and I really enjoyed his speech and language pathologist. Eli's normal PT and OT (physical therapist and occupational therapist) have been recommending speech therapy for him since about July but Al and I wanted to wait and see if his language would progress on his own. He has done well on his own without speech and babbles constantly and is the most social child I've ever seen but the process of actually forming words is slacking big time. Debbie came and assessed Eli using the Rossetti Infant Toddler Language Scale which placed him at a 9 month level for receptive and expressive speech. She said his strengths are that he is incredibly social for his age and that he has "beautiful mature jargon". I guess it sounds better coming from the SLP instead of me saying Eli sounds like a "little German dictator" all the time! HEHEHE.....what a lovely mother I am ;)

Our homework assignments to work on until Eli's next speech appt in a month are as follows.

1.) Help identify body parts functionally (i.e. "give me your foot, I'm washing your hands, blow your nose, etc.")
2.) Hold up objects that Eli wants by our mouth, say the name of the object, then give him the item.
3.) Imitate silly sounds, exclamations (i.e. "uh-oh, whheeee, oh-no"), animal sounds, and environmental sounds.
4.) Try a few simple words like eat, ball, and hi.

And what does Eli have to say about all of this??

"Dadaddadadadad.......nanamdnadmadfkaoing , adfodign! adfkdngians....babkdieng?" All with a smile and flirting with anyone in a 10 foot radius. Life is fun!

Wednesday, October 18, 2006

Advice on Ghosts?

It seems as though we have a visitor in our house. Carson has been telling us for about 8-10 months that there is a ghost that lives in the vent in his room. At first the ghost was his friend and he would tell the ghost goodnight before bed while looking up at the vent in the corner of the wall. Over the summer the so-called-ghost started being not so friendly. Carson started waking up frequently overnight and screaming. He would never actually be awake during these screaming fits when Al or I would go into the room. Then Carson began telling us more and more about the ghost. He told us about a month ago that, "Mr. Ghost is covered in red paint." Of course this freaked us out. Where would a three year old who is not exposed to horror movies come up with a ghost story including a phantom covered in blood-like substance?!! Now Carson keeps telling us that, "Mr. Ghost flies around my room above my bed, all around in circles, and never lands, but he doesn't have wings". Creepy. No wonder he keeps coming into our room in the middle of the night and asking to get in bed with us. I keep walking him back to his bed, tucking him in, kissing his head, kissing doggie blanket, and getting back in my bed but the night wakings have to stop.

Carson says the ghost doesn't try to talk to him. I guess that's a good thing. He has a nightlight in his room so it's not dark and scary. We have never read a book or watched a movie with ghosts covered in blood or anything similar. Yet Carson is scared of Mr. Ghost that lives in his vent and flies over his bed with no wings and is covered in red paint. Great.

Any advice from my faithful readers?? My mom decided we needed to light a white candle and tell the ghost to "go toward the light and out of the room". So she did on Monday. Carson said, "Go to the candle Mr. Ghost but don't get burned, it's hot". I thought it worked but he said Mr. Ghost was back again last night. Al and I have tried praying in Carson's room too and so far, no luck. I need help, and sleep. At first I thought it was just a normal kid imagination thing but the red paint and no wing parts have me a bit squeamish. Thanks in advance for the advice......Happy Halloween!

Friday, October 13, 2006

Renewed faith in Vaccinations

Although yesterday was one of my more hectic days in quite awhile, it was a day for good news. Oh how I cherish the good news days! First of all, Carson DOES NOT have pertussis. My faith in my child's immunity is renewed. What a relief it was to hear our nurse say that his test came back negative. Now we just need to figure out why he continues to cough like a dying emphasemic for hours upon end. But he doesn't have whooping cough and I will take that result any day. The house echoed again overnight with Carson's song and his voice is beginning to sound hoarse but overall he is feeling a bit better. Hopefully the coughing will stop soon so we can all get some much needed rest.

Now on to the other good news from yesterday......

Eli had his routine scheduled neonatal clinic follow-up appointment yesterday at 10:30. They periodically bring him in and make him perform like a small monkey, measure him from every angle, scrutinize him for possible defects, analyze the events that transpired between visits, schedule tests, and make diagnoses at these wonderfully *short* 3 hour appointments. Eli did splendedly. I was one proud mama bear! We always have the same developmental pediatrician and PT doing the assessment on him and they were quite pleased with his progress since his last visit. He scored well on his Bayley Infant Neurodevelopment Screening Test which ended up placing him at his adjusted age for development!! This means that Eli is at a 12 month level for most of his developmental skills. He is four days shy of being 16 months actual, 12.5 months adjusted. This is big news for a parent of a micropreemie and for us because 6 months ago he was 3-5 months delayed for his adjusted age. So, all in all, Eli has made up for about 4 months worth of developmental delay since his evaluation in April!!! Now, I know that he is still 4 months delayed for his age and that the day he turns 2, they will no longer give him the extra 3.5 months of adjustment for his prematurity......BUT, to have him be at his adjusted age yesterday was wonderful! They only downside to this was that if his assessment was two week earlier, Eli would have scored with the same 3-5 month delay he was showing in April. Due to Eli learning how to clap, point, wave, stand, and walk all in the past two weeks he majorly boosted his score.

I don't care.....the numbers aren't for what he could do two weeks ago, they are for what he is doing now! They also mentioned that Eli most likely has an extremely mild form of CP that is not and will not affect his movement function. We were expecting them to tell us that so it was not a huge surprise. As parents of a 25 weeker, coming out of the NICU alive is amazing but having a walking, babbling, smiling, 12 month developmentally appropriate 16 month old......is nothing short of a miracle. I'll update more on Eli's NICU appointment later but I have a huge critical care exam on Monday and my textbooks are calling my name. Although I do tend to complain a bit (okay a lot sometimes), all I need to do is look around me and see how truly blessed we are with our two special boys. What would I do without them?

Wednesday, October 11, 2006

Can I get a Whoop, Whoop??

Two nights of no sleep due to a sick, uncontrollably coughing three year old being present in our bed led me to take Carson back to the pediatrician to see what else they could do for my poor baby. The cold that took hold and required steroids and endless Albuterol treatments seemed to be getting better last Friday in Tennessee. Tissues filled with snot were no longer carpeting our house and the boys were back to their usual fighting and playing. Then Carson started increasing his coughing again on Saturday night/Sunday morning. By Monday morning Carson was barking like a dog in spurts. Monday night was terrible and we thought Carson was heading down to Children's Hospital for another fun visit again. He spent the entire night plastered against me in bed violently coughing for 4 hours straight, right in my face. Ahhh, the things we put up with to comfort our children.

By 5:30am Tuesday morning Carson fell fast asleep and stopped coughing. No fever, no runny nose, no wheezing. He woke up at 7 wanting to go to school. After nap on Tuesday he had another 3 hour coughing fit where he couldn't catch his breath or stop coughing for the life of him. Then it stopped. Peace and quiet. He started playing like nothing happened. Until 11:30 when he crawled into bed with Al and I and proceeded to vibrate and cough himself to death for a record 5.5 hours.

"Mommy, I don't feel *cough, cough* good *cough*."

"I know baby. We're going to see the pediatrician in the morning."

"**cough** Okay *cough* *cough* *cough*."


Back to sleep for another few hours with the random single cough here and there but nothing serious until I woke up to call the doctor in the morning. Appt at 10:45. Great. I'm going to miss my last (and very important) lecture before our big exam on Monday to take Carson to the doctor. Oh well. Again, with the sacrifices.

We get to the doctors and his lungs sound great. I already knew that. They rule out pneumonia. Then I hear what I had been fearing...... PERTUSSIS, aka "whooping cough". Lovely. Wasn't he vaccinated against that with his DTP series? Oh yes, yes he was. Great. They shove two long swabs with metal handles up Carson's nose to send to the lab. Carson gets a bloody nose. To add insult to injury, in comes the RN to give him his flu shot. Ouch. At least he was able to pick which leg and pick out a blue sport car toy out of the treasure chest box. We'll know tomorrow if he does in fact have whooping cough and if we can expect another 2 months of this lovely cough and a nice round of antibiotics to go along with it. Wish us luck. At least we can enjoy the periods of calm between the coughing storms and cherish the fact that Eli doesn't seem to be affected at all!

Tuesday, October 10, 2006

Sweet Southern Livin'

We spent the last four days in Tennessee visiting family and friends and it was wonderful. There is just something special about the south in the fall and getting away from the stress of home, school, doctor appts, and work. Al wrapped up his career with Bob Evans Farms Inc. on Wednesday and we had the opportunity to pack up the boys and make the 6+ hour drive to visit Granny and Papaw on Thursday. Carson and Eli were surprisingly well behaved during both long car rides. I was armed with snacks, fun toys, books, travel magnadoodles, songs, and silly games in preparation for distration but somehow the little monsters both slept and/or occupied themselves most of the way! I know that will come back to bite me in the butt in the future but Al and I were just happy to live with a semi-stressfree trip.

The boys were still trying to recover from being sick so we had an entire bag of meds in addition to Eli's tube feeding supplies. We could have passed as a traveling pharmacy with all of the drugs and guaze and tape shoved into the corners of Al's Corolla. Carson and Eli didn't seem to notice as long as their toys weren't missing. On Saturday we went to a small country town's fall festival. Carson rode a John Deere tractor and was able to get inside a military issue Hummer. Being the nice Mommy that I am, I forced him to ask the Army officer by himself if he could get inside the Hummer. I have to build up Carson's confidence and social awareness somehow ;) Eli was a riot at the fesival. He wanted to walk everywhere and thank goodness Uncle Aaron was happy to follow him around and pick him up every couple of feet when he would topple over. At one point there were clog dancers in a circle and a band. Eli started walking and clapping his hands to the music and trying to get into the circle. That's our little ham! The high point of the festival for Carson was when three trains came through the middle of the town about fifteen feet away from where we were standing. One of the trains had a blue engine and Carson insisted that it was Thomas the Tank Engine. After a snack from a vendor for being well behaved at the festival, we carried two very tired boys back to Uncle Aaron's truck for the ride home.

Our whole visit to TN was great and it was a much needed break from all of the stressors that have been surrounding us here at home. Al starts his new job today and it is looking to be a move in the right direction for our family and for him career wise. After relaxing and enjoying time with family and friends in TN, it was hard to come back home and get into the swing of things again. Laundry was waiting, papers need to be finished, studying calls my name. Medical bills were in the mailbox, papers from central scheduling for Eli's surgery arrived over the weekend, and we are thrown right back into therapy sessions and life. In 2 hours I get to pick up Carson from the bus stop and hear about all of the exciting things he learned about at school today and that joy in his eyes can't be matched. In 3 hours Eli's OT comes and he gets to show her that he learned to clap and release objects since she was here last. It's a good life.

Tuesday, October 03, 2006

Update on the 'Roid Boys

Carson was feeling well enough to go to school this morning but he was loaded up with meds prior to getting on the bus with Mr. Smith (his bus driver). He had his usual Adderall XR and Flinstone vitamin with a lovely combo of Orapred, Motrin Cold, Delsym Cough Syrup, and 2 puffs of his Albuterol inhaler. I felt like a pharmacy dealing out drugs to my 3 year old!! His cough is still nasty but getting better and he isn't needing Albuterol as much. When Carson came into our room this morning he said, "Mommy, I can't laugh anymore because it makes me cough. What if I have to laugh at school today?" It's hard not to smile at 6:30 in the morning when your 3 year old comes up with a comment like that. I told him it would be okay to cough if he laughed as long as he covered his mouth.

Eli went to the pediatrician this morning while Carson was at school. He was already scheduled to get his flu shot so they squeezed him in for a check-up to make sure the steriods were doing their job. He now has a double ear infection and is coughing up some lovely dark yellow mucus so they put him on a 10 day course of Amoxicillan to make sure they kill any nice bugs that may be growing in his respiratory tract and ears. We are leaving for TN on Thursday afternoon for a short vacation and I don't want to visit any emergency departments while we're down there. Eli got his flu shot for the season and did not even cry a tear. That's our boy! Hundreds of shots, IVs, and procedures preformed on him over the past 15 months have kind of desensitized him to pain so a little flu shot is a drop in the bucket to him.

Thanks for checking up on the boys. Now I'm praying that this scratchy feeling that is creeping in the back of my throat isn't the beginnings of Carson and Eli practicing "sharing" with their mommy!

Monday, October 02, 2006

Sick boys and Steroids

Carson brought home another lovely cold from preschool again last Thursday. On the way home from clinical Thursday afternoon I called my mom to check up on the boys and see how they were doing. She told me Carson had a runny nose and was laying around. Now anyone that knows Carson knows that this kiddo doesn't just lay down. He is active 24/7. Friday the barking, nasty cough started. By Saturday Eli had a runny nose and Carson sounded like a chain smoker. Carson was wheezing and on Albuterol every 4 hours. Saturday night was terrible. Eli developed a cough quickly and it came on bad. He was wheezing and I had to use his Albuterol every 2 hours. Sunday morning they both had temperatures and our house sounded like an emphasema clinic. Al came home from work early Sunday afternoon and we took them both to Children's Hospital to get checked out due to Carson's asthma and Eli's BPD (broncho pulmonary displasia--preemie lung disease) and their wheezing.

The doctors said that it was just your regular, run-of-the-mill cold but due to our boys both having lung issues, it had hit and affected their lungs hard. So, in addition to the 'round the clock Albuterol treatments, alternating Tylenol/Motrin, and lack of sleep, both boys are now on a 2mg/kg dose of OraPred for 5 days. OraPred is an oral steroid to help their lungs with the inflammation caused by the "cold". It's only the very beginning of October and both boys are already on steriods for a simple cold.....it's going to be a long winter. Thank God Eli was approved for a second season of Synagis and the boys are getting their flu shots tomorrow!

Sunday, October 01, 2006

What makes a woman, a woman?

Hopefully it's not a uterus! On Monday I had my post-op visit from my surgery and I was incredibly anxious about what would be said at this visit. I tried to prepared myself ahead of time by researching the possible options out there for my condition (severe adhesions and adenomyosis). Those of you who know me in real-life know that I overly prepare for things so it was no surprise when I had a Plan A, Plan B, and Plan C, all lined up in my head for possible ways my appointment could go. But, as we all know, life doesn't always go as we plan it even with the best preparation.

My ob walked into the exam room and said, "Hi Kellie. So, How are you feeling? I guess it looks like you're going to have a hysterectomy in the very near future".

I think I had time to gracefully retrive my jaw off the floor before continuing the conversation but I'm not quite sure. Out of all of my "plans", a definate and immediate hysterectomy at age 23 wasn't one of them. I knew that a hysterectomy was an option but I thought it was in a time frame more like 5-10 years down the line.......not in terms as "How quickly can we schedule this?".

As it turns out the adhesions (aka scar tissue) that they found when they went in with the scope are one of the most severe cases my ob has ever seen. He has been practicing for over 30 years. I was able to see the pictures from my laporoscopy and they were amazing. The adhesions are classified as severe and involved my uterus, fallopian tubes, large bowel, possible ovaries, and possible bladder. They could not determine if my ovaries and/or bladder were involved b/c the adhesions were so severe that they couldn't see them. The involvement with my large bowel is especially worriesome and can cause many complications which I don't even want to mention or think about. All of this scar tissue is the reason for the pain I've been in lately. It accompanied with my adenomyosis calls for an immediate abdominal total hysterectomy and possible removal of both ovaries (depending on their involvement once they get in there).

I am devastated and am having a hard time dealing with all of this on top of caring for the boys, struggling in my marriage, and fighting my way through my final year of nursing school. My ob wanted to do the surgery asap but I have to wait until my quarter at school is over. This means my surgery date is the day before Thanksgiving, November 22. I will be in the hospital over Turkey Day, my favorite holiday. I do have so much to be thankful for though. My two little miracle boys who shouldn't even be here but are thriving and beating all the odds. My husband who drives me mad and we have to work so hard through our issues but he means well in the end and loves me more than anything. And all of the support I have from everyone else. It's just hard to deal with it all and hold it all together when it seems like things keep piling one top of one another for 4 years straight. This wasn't meant to be a pity party post (sorry about the alliteration!) but I had to get my feelings out a bit. This operation is going to be a trial in my life and I hope the 6-8 week recovery goes quickly and that I am able to get back into the swing of things and out of this funk I've been stuck in for way too long.

Friday, September 29, 2006

A long overdue update

I need to apologize for my absence from blogland the past week. Things have been crazy to say the least and I haven't had time to think, let alone use the computer for pleasure. I have tons of things to update on but I will space them out over the next few days. Today will be all about Eli!


Big things have been happening in the world of toddlerhood at our house. Our tiny miracle boy is officially a one year old. His 12 month adjusted birthday was in the middle of this week and Eli celebrated the occasion by WALKING!!! Yes, we are now the proud parents of a walker. He still crawls almost all of the time but if you stand him up or he pulls up on something, the little stinker will walk 10-12 steps to get where he wants to go. Unfortunately that location is usually to get one of the toys his big brother is playing with. This tends to result in either a small shouting match between the two that goes something like this....

"Eli, no! This is my toy!" -C
"AHHHH......" -E
"NOOOOOO! Get your own toy." -C
"Na na na AHHhhhhdadadadda" -E
"AAHhehehehaaaa. Shut up Eli!" -C

Then Carson shoves Eli down and Eli with his "new walker" balance falls on his butt, hits his head on the ground, cries, then gets back up to try and get Carson's toy away from him again. By this time Carson is in time out. Did I mention that I have been tired this past week???





Eli also added two wonderful developmental milestones last week that we have been waiting to see for months. Our baby started waving and clapping!!! It is so cute to see him clap when we play patty-cake. I need to stop referring to him as the "baby" pretty soon as you can see. Eli is turning into a rough and tumble toddler right before our eyes. In this pic he was enjoying some truck time in the backyard at Gigi and BobPop's house with Carson. Boys will be boys. Aside from the dirty boy persona, Eli must think he is the most adorable baby ever because the child flirts shamelessly with every girl he sees. He will smile, tuck his chin to his chest, then wave at any female he can, the whole time keeping this sheepish grin on his face. Boy, I'm in trouble with Carson and Eli.



Now for the medical update on our peanut. Eli is doing well. He is 20lbs even and just over 30". His chromosomal microassay came back completely normal! YAY! Unfortunately his growth hormone testing did come back low (specifically his IGF-1 for all of your medical people reading). We haven't discussed treatment direction yet with his doctors but growth hormone replacement in the form of daily injections is most likely in the future for Eli. It's not the worst possible outcome in the least but a parent never wants to give their child a shot every night. The blood test for Smith-Lemli-Opitz Syndrome came back negative as well, just as suspected. Eli's GI doctor believes that he has an allergy to milk due to his problems with rashes, bowel issues (severe constipation then changing to nasty diarrhea--never a happy medium) but since he is on an elemental formula and is pushing away a lot of milk products on his own now, she is holding off on testing him unless his symptoms get severe. His surgery is scheduled for December 4th. The surgeon that preformed his Nissen fundoplication in May will do the incisional hernia repair and the 2" muscle biopsy out of one of his thighs. Then his GI doctor will do an endoscopy and colonscopy with biopsies from both. The surgery will take a little over 2 hours but they can get all four things done under the same anesthesia. I will only be 12 days post-op from my own major surgery (see post later this weekend) so Al is going to need to help out a lot with Eli and his recovery!

Now that this Eli update is super long I will leave you with a pic of a tuckered out Eli laying on Gigi's lap. He loves to swing on the front porch on her lap just like I did when I was a baby. Our teeny, tiny miracle boy has made huge strides in the past week and we can't wait to take him to the neonatal clinic on 10-12 to show him off to the doctors who told us he would have CP!

Friday, September 22, 2006

Preschool Curriculum Night

Last night Carson's preschool had teacher-parent-get to know our school-night. Wow...these little guys have to learn a lot in order to be ready for kindergarten. Once we moved past the particulars about testing and criteria for moving on to the "next level", we were able to see what our precious kiddos DO all morning long at school. They made fun picture books to themes of books like "Miss Wishy-Washy" and "I Went Walking" with pictures of the kids acting out parts of the book on each page. It was fun to see the actual games and activities that Carson comes home talking a mile a minute about everyday when he jumps off the bus at 11:40. I was surprised that the stories he tells me were actually quite accurate to what he does in class. Mrs. Linn, Carson's teacher, really enjoyed telling us about "News/Share Time" and how the kids get to sit in a circle and share their item for the day. Carson gets to bring in an item to share on Mondays and Wednesdays. Sometimes I write Mrs. Linn a little note to tell her why he picked a particular item (and so she can prompt him for things to talk about if he doesn't have much to say to the class during share time) but other times his choice of items has spoken for itself. Carson's favorite "share item" so far has been his Buckeye necklace he made with Gigi and Bobpop. He sat on the front porch and helped Bobpop drill the Buckeye nuts, watched Gigi thread the beads and Buckeyes, and picked out two extra special blue beads to be added on b/c "blue is his favorite color". He wore it to watch the Ohio State v. Texas game and kept yelling O-H-I-O. Mrs. Linn told me that Carson shared all of these details with the class!

I was impressed with the classroom set-up and with Mrs. Linn once again. She is a good fit for my personality and Carson just adores her. This preschool program has opened him up socially in so many ways and it is truly a blessing. Yesterday Carson made a big breakthrough at preschool. Mrs. Linn said that he was interacting with another little boy for about 30 minutes and they were helping each other cook pizza in the play oven at school. This is HUGE for Carson b/c up until now he has been using parallel play with the children at school. We are proud of our little monkey.

Wednesday, September 20, 2006

A flash back in time....

I was reading through some of my old journal entries yesterday on Eli's babiesonline site (see links on the right side of my blog page under "Eli's site") and decided that I would make my post for today a re-post of my entry exactly one year ago today. It is amazing how some things have changed. How philosophies, attitudes, health status, and life in general has evolved in just 365 days. Are we where I thought we would be right now when I wrote this entry a year ago? I would say no. It has been a rough 15 months, but a wonderful 15 months at the same time. To sum it up, it has been an extension of the NICU rollercoaster drawn out in a 15 month whirlwind of activity and doctor appts. I didn't expect to deal with the ongoing feeding issues, the FTT, the aspiration, the severe GERD, the GJ tube, the Nissen fundoplication, and all of the wonderful things associated with a micropreemie with growth delays and hypertonia. I also didn't expect Eli to excel so quickly after 12 months gross motor wise. If you would have told me a year ago today that Eli would have taken 10 steps today I would have laughed in your face. Yes folks.....you read that right.....our little bit took 10 steps yesterday out of the blue. But I'll save that for another post in it's entirety. For now----the post from exactly one year ago today---September 20th, 2005. Enjoy!


Tuesday, September 20, 2005
Overall the last two days of doctor's appts have been good. I feel like we are going to get some progress soon. Eli shocked me yesterday though when they put him on the scale at Children's Hospital. I would have bet big money that he was at least 6.5lbs. Unfortunately he weighed in at 5lbs 15oz and 19" long. His neonatologist was concerned with his low weight gain (less than half and oz/day). Eli should be gaining a minimum of 1oz/day at this age. His neo said it's most likely related to two problems. 1.) Eli is an extremely active baby and is very strong. He is using most of his calories just being Eli. 2.) Eli's reflux is causing him to avoid eating much. With the Pecid and Reglan he should be doing better so they are considering adding Prilosec too. His neo also scheduled Eli for a barium swallow study on 10-3. They will have him eat a bottle with barium added and take continuous x-rays throughout the feeding and afterwards to see if he has any problems with the coordination of swallowing his food or with aspirating food as well. Depending on the results of this test we will either add a thickener to his milk like Thick-It to make it harder to aspirate with his GERD or possible try some NG/OG feedings until he can get the process of eating down.

Great news on the tight muscle front. Eli's neo said that he looks FABULOUS and that he is ahead developmentally!!! Oh my goodness....this is something we were never supposed to hear with a 25 weeker. They said his legs and hips were a bit tight and to keep doing stretches and baby massage daily. They will keep an eye on it in the coming months but don't think he'll have an CP problems. His apena/heart monitor was downloaded yesterday as well and his neo said Eli frequently has periodic breathing (episodes of deep breathing into very swallow breathing in a pattern) in addition to his apnea/brady episodes. When he was listening to Eli's lungs with the stethoscope he was having periodic breathing so at least he witnessed it yesterday. Al and I were just beaming when his neonatologist said that we were doing an excellent job and that Eli's progress can be atributed to us!!!

Today at Eli's weight check, he weighed in at 5lbs 15oz exactly again! They decided to add 5mLs of oil to every 2.5oz of breastmilk/Neosure 30cal/oz. This will bump each feed up to 41cal/oz which is more than double the calories in normal breastmilk or formula. His ped wants to get his weight gain on the up scale as well as his intake (some days are as low as 5-6oz) so we can avoid getting a G-tube. I want to avoid this at ALL COSTS (well, except for the health of Eli). A G-tube is a surgery where they place a feeding tube directly into the stomach from the abdomen. You then feed the baby through there stomach instead of their mouth. I'm am praying it doesn't come to this and that Eli starts eating more and picking up weight. I would hate to put him back in the hospital for surgery!

If you've read this far, you're an angel. Thanks for keeping up with our little miracle. I hope everyone enjoys the new pictures of Eli. Al and I can't believe how big and healthy he's looking now. Just under one week until Eli's DUE DATE! Then we will be in positive adjusted age. We're off to go look for Halloween outfits for Carson (and maybe a little one for Eli). Can't wait to post pics of those!

Saturday, September 16, 2006

My alarm clock

My parents had a neighborhood gathering last night at their house complete with a fire, pizza, smores, beer, and good adult conversation. It was nice to let the kids play with their friends and get some energy out before bed. Eli fell asleep around 7:45 and my parents agreed to let him spend the night. We brought Carson home with us because he was still awake when we left. He was exhausted from playing hard all day yesterday and fell asleep right when we put him in bed.

First of all, I am not a morning person. This puts me at a disadvantage as a mother right off the bat. I have learned that coffee can be one of my greatest allies to get through that first hour with the kids. Instead of the harsh, incessant blaring of my alarm clock waking me up today, I had the best wake-up a mommy can get. Carson crawled into bed with me a little after 8 and laid his head on my shoulder. He snuggled up close, kissed me on the cheek and said, "Good morning mommy. I love you so much."

I didn't need my coffee this morning because caffeine just can't come to close to your three year old melting your heart all over again.

Thursday, September 14, 2006

wanna awesome prize??

I was really excited to log-on to read one of my favorite blogs and see a post about a contest. Check out Laura's blog because she is a wonderful writer, mother, and to top it all off, she's a NICU RN! Her blog is designed by the very talented blog designer that is having this fall contest and giving away two free, customized blog designs. The designer's name is Susie and you can check out her work at Blue Bird Blogs. Information about contest and how to enter is as follows.....

~ Send an e-mail with your name and blog address to bluebirdblogs@gmail.com
~ Your name will then be added to the drawing.
~ Entries are accepted from 7pm EST Thurs 9/14 until 11:59pm EST Friday 9/22

****Bonus**** Mention the contest in your blog and get an additional 5 entries!

The winner will be announced on http://bluebirdblogs.blogspot.com on the morning of Saturday, September 23rd, 2006. Good luck!

Wednesday, September 13, 2006

On the upswing and mommy goes to school

After two long nights of no sleep and coughing duels between Carson and Eli, we seem to be coming out of the worst of it. Carson felt a lot better today and was almost back to himself. He only needed one Albuterol treatment and bounced around with his Thomas the Trains and Bob the Builders after preschool. It was great to have my boy back even if he still coughs without covering his mouth! Eli had a bad night. He was up coughing so hard he couldn't catch his breath. It is definately croup. Albuterol is helping and my mom gave him a nice warm bath tonight before bed while I was at class. He felt much better this afternoon than he was feeling last night and this morning so I'm guessing we're starting to see the end. Thank God for Synagis starting next month. I can't tell you how happy I am that Eli was approved for a second season. He won't be excited to get two shots every 28 days from October to April and our insurance company isn't thrilled to be paying over $23,000 for the seven months of shots but at least we have that little bit of added protection against RSV.

On a completely "kid free" topic.........school is definately back in session for me. This week has been hectic to say the least. Fall quarter of my senior year is packed full of heavy course work from my critical care nursing course to my senior year experience course entitled "Inventing the Self and the Future In a Postmodern World". I also threw in sexuality and human nature course for my nursing elective. Maybe that will spice things up :) Clinical starts tomorrow and I am lucky enough to be on a great unit at the hospital where my boys were born. I am up in the ICU for my critical care rotation and hopefully I will learn a lot and get through the next 10 weeks. One step closer to my BSN and taking my NCLEX. Wish me luck and sprinkle some magic sleeping and good behavior dust on Carson and Eli for me so I am able to get my studying, reading, and writing assignments completed without too much of my infamous procrastination. I'm off to take some Nyquil and read a few chapters of nursing text before bed.

Tuesday, September 12, 2006

It must be cold season....

Carson brought home the first cold of the season from preschool at the end of last week. He started off with a nice runny nose that turned into a cough. My normally energetic boy morphed into a couch potato that sounded like a chain smoker. Then he was such a nice brother and shared his cold with Eli. I thought I was going to die when those first coughs came from Eli in the middle of the night. Colds and micropreemie lungs just don't mix. Carson has asthma and Eli has BPD so both boys are on Albuterol treatments for just a simple cold. Thank God for Tylenol Cold and Cough, Delsym cough syrup, and lots of cuddle time with mommy! My precious boys also shared the love with me and I'm now sitting here with a great head cold too. At least I can be sympathetic, or is it empathetic?

I'm off to my American Heart Association BLS for Healthcare Provider CPR renewal course from 6-10 tonight. Hopefully I bring enough tissues and I don't mess up in my drug-induced state of mind. Can someone please tell me how my husband who I've known for over 5 years NEVER gets sick?

Monday, September 11, 2006

Five years later

I don't know why I decided to skip my morning Anatomy and Physiology class the morning of 9/11, but I did. I remember waking up in my dorm room in TN and turning on the TV to see images of the first tower burning and wondering what was going on. I watched alone in my room as the second tower was hit and chaos erupted. Was this really happening? It was like I was in a daze that I couldn't break myself from. I watched the whole morning as history unfolded before my eyes. My normally social trip to the cafeteria to meet my volleyball teammates for lunch was surreal. The student body was going through the motions and everyone in the cafeteria had their eyes glued to the television to see if there would be any explanation for the events of the morning. Or worse yet, more events similar to that morning. Classes were cancelled. Volleyball practice and our upcoming matches were cancelled. I threw myself into CNN and trying to learn as much as possible about the current events as I could. I ordered a subscription to Newsweek. I researched. I wrote essays for my writing class. My mind was young and impacted by 9/11 not only due to the magnitude of the attacks on our nation and the Americans that were murdered that day, but also due to where I was in my own life at the time.

I pray our country continues to remember the victims that were murdered five years ago today. Remember them not to use them as a political pawn or as a ratings booster but because they were murdered by extremists who tried to destroy what our nation is built upon.

Saturday, September 09, 2006

Scarlet and Gray

Go BUCKEYES!!!




Beat Texas!

Friday, September 08, 2006

A December Date....

We just got home from the surgeon. Unfortunately I was right and Eli does have an incisional hernia. His surgeon does not want to go in and reopen his scar from his Nissen fundoplication surgery since Eli is just over 3 months post-op. There is a high risk of operating on the site prior to 6 months post-op due to his scar tissue not being fully formed and the increased risk of adhesions. The muscle ring around the hernia site is stable and so Eli's doctor decided to wait until December to go in and do the repair. Eli will then be a little over 6 months post-Fundo and it should be an outpatient procedure. If we noticed that his hernia is not reducible (i.e. we can't push his intestines back into his abdominal cavity) or that Eli seems to be in pain due to the hernia, we may try and push up the date of the surgery.

Eli will also have a muscle biopsy taken at the same time as his incisional hernia repair. The muscle biopsy will be taken out of one of his thighs and given immediately over to pathology to be put into liquid nitrogen. They want to do this biopsy to try and rule out
mitochondrial disorders as a source of Eli's extremely high caloric needs and poor growth. This will add another 2" scar onto his body but thankfully it won't be in a very noticeable area in most life situations.

We go to the GI doctor on Tuesday to discuss if Eli's upcoming endoscopy and colonoscopy can also be done at the same time as the hernia repair and muscle biopsy so he can only be put under general anesthesia once instead of multiple times. It would be nice to get all four procedures out in one big bang. Hopefully Eli will be at a good, healthy weight and height in December and on track with his adjusted age for milestones so that these procedures/surgeries don't have a huge impact on him as they have in the past. I am quite anxious about the effect another surgery will have on our little man since his fundo in May almost killed him. The months of weight loss, FTT, malnutrition, illness, regression of development, and loss of *our* Eli was hard on everyone and I hate to put an 18 month old Eli through it all over again. All of this is necessary though because of the negative outcomes if we refuse the surgeries/tests.

Good news for the week......

1.) Eli was resubmitted for
Synagis and qualified!! Our insurance company has already paid in full for the first month. I am so relieved that we will have the extra boost this RSV season with Carson bringing home who knows what from preschool and Eli going through at least one more surgery. The first month cost our insurance $3,343.76 and Synagis is dosed based on weight so the cost will only increase (hopefully) as the season progresses through April. Thank God for insurance. We have paid a ridiculous amount out of pocket this year but it pales in comparison to what Aetna has shelled out.

2.) Eli went to the opthamologist on Tuesday for a follow-up
ROP check. We got the wonderful news that he does not need glasses quite yet! His opthamologist said that his ROP (stage 2, zone 2 bilaterally) did cause him to be near-sighted and he most definitely will need glasses in the future. He suspects that Eli will get a pair in about 2-3 years judging by the length of his eye. I was relieved to hear this bit of news b/c Eli won't even keep sunglasses on for 10 seconds and I was at a loss on how to keep glasses on the kid.

3.) The best news of all......I'm done writing this extremely long and medically in-depth update on our little 25 weeker. Thanks for making it through it all!