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 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
~ 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 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" 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


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!

Wednesday, September 06, 2006

Doing the Two Step

Our 25 week micropreemie is quickly becoming a big boy. Eli took two steps on Monday!! He started standing on his own for 30-45 seconds at a time on Sunday when Al's parents were in town. Then on Labor Day he decided he really wanted the cookie we were bribing him with (I know....we are great parents) and he took two itty bitty baby steps towards us before falling. I cried such happy tears. It was wonderful and I was so glad that Al was able to see the big moment. As a "restaurant widow" I am home with the boys by myself most of the time. This means that Daddy misses out on a lot of the firsts. He just happened to be home for a 45 minute break out of a 15 hour work day when Eli started performing. Eli hasn't taken any more steps since then but is getting a little bit better at standing and has made it to 50 seconds twice now. I see some weight loss in my future from chasing an overactive ADHD preschooler and an exploring toddler! Here are some pics of our daredevil standing (click to enlarge them).

And yes, his shirt does say "I do all my own stunts".

Monday, September 04, 2006

Labor Day: Popsicles and Tortilini

What would a Labor Day in our house be without messy kid faces and food?? I guess with those two criteria it doesn't even have to be Labor Day but these pictures of the boys are from today.

Carson and Eli enjoyed a yummy dinner of cheese tortilini with veggie pasta sauce. The little guy really dug into it as you can see.....

Carson then decided to poop on the potty while Eli was napping so Gigi bought him a special treat from the ice cream man. Who knew blue and purple monkey ice cream popsicles could make such a mess???