Saturday, December 30, 2006
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
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
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
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
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
Tuesday, December 12, 2006
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
The miracle of my 30 wkr and 25wkr together and healthy!
Thursday, December 07, 2006
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
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
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.
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.
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
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
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
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
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
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
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
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
One serious Woody cowboy and an bee excited about pumpkins
Tuesday, October 31, 2006
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.
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!
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
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
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
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
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
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
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
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
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
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
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
"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
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
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
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
~ Send an e-mail with your name and blog address to firstname.lastname@example.org
~ 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 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
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
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
Friday, September 08, 2006
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!