Bennett's Journey

Bennett Playing Soccer!

2009-10-03T11:36:00.000-07:00

He's not just walking, he's dribbling a soccer ball too! As long as he doesn't get distracted...

The Climb!!!

2009-09-21T09:52:00.000-07:00

Listen closely and you can hear Bennett singing "The Climb" :) SO PRECIOUS!!!

Quite an appropriate thought for the little guy, huh???

I PINKY SWEAR to you I will be posting video very soon of Bennett walking!! He's all over the place now! No stopping him! Its simply amazing!! Bennett had a physical therapy evaluation week before last and literally the day before just took off!! No PT needed!!! WOOOO HOOO!!!

First Words???

2009-08-27T07:19:00.000-07:00

Its really hard to tell with Bennett because he'll sound like he's saying something, but then he stops or doesn't use it in context.

But.... we think Bennett has his first words....

"Ace! Daddy! Ace!"

Yep, Bennett calls Ace by his first name! Boy do they start young!

Anyway, we're pretty sure he's really using this in context now, so I'm bringing down the gavel and making the official determination that Bennett's first two words are Daddy and Ace.

Now, that there is a great story for the baby book!

I'm Walking!!!

2009-08-16T19:06:00.000-07:00

Tonight marks the first day of Bennett officially standing up by himself and taking a few little steps!

Here he is warming up with Granpa:
A few tips from Coach Mommy!
And we're off...
His proud moment!
What a milestone!!!
We are so proud of Bennett!

Bennett's 15 Month Check up

2009-08-13T19:23:00.000-07:00

Sorry, I have to make this quick. I promise to follow up very soon with pics!

Bennett's Stats:

18 lbs 7 oz - under 3rd percentile
27.5 inches - under 3rd percentile
head circumference - 15th percentile

A new study has recently come out showing that very small preemies like Bennett, born under 1500 grams do not tend to "catch up" in size until about 5 years of age. Trying to "fatten" him up can have the dangerous side of affect of causing diabetes or obesity when he does catch up. Because he is perfectly proportional weight to height, we'll just be annoyed that he is so tiny, but content knowing that FOR HIM, this is normal and he's doing well.

Developmentally, Bennett is about the level of a 9-12 month old. His Pediatrician thinks we should start speech therapy with him soon, since his speech is very delayed.

Overall, he's doing fabulous!

BIG Milestones!!!

2009-08-03T19:48:00.000-07:00

Bennett decided to knock our socks off this weekend with two HUGE milestones!!!

First, he started to stand unassisted!!! He can only do it for about 10-20 seconds at a time, but he is so darn proud of himself when he does!!!

Second, Bennett took his first three steps on Sunday! Ace was holding his hands when Bennett let go, then sort of panicked, but instead of dropping to the ground, took three amazing steps to the safety of daddy's arms!!!!!!! We were all so very proud of him and jumped up and down clapping like lunatics!

This child never ceases to amaze us! Pics to come soon!

Finally Better

2009-07-27T17:32:00.000-07:00

It only took two weeks, but Bennett's cold is finally gone!! We survived it without any emergency room visits too! YAY!!!

Fortuitous

2009-07-16T11:07:00.000-07:00

Bennett is sick ... again. It started with a runny nose on Sunday that I thought was related to teething (he's been acting like a vampire biting us lately!). He had seemed to be getting better but when I got home from work last night, he was starting to wheeze and cough some.

It is indeed very fortuitous that Bennett's pulmonologist gave us that new prescription last week for an oral steriod to keep on hand for when Bennett starts to experience respiratory distress. It came in quite handy last night when around 8 p.m., Bennett started to wheeze heavily and the albuterol treatments were only helping for a short period of time. Without the steriods on hand to help pop his lungs open, we'd have spent yet another night in the ER!

He's doing better today but still has a cough and needs some albuterol to keep his chest clear. Please send prayers for swift healing and health for our little buddy!!!!

Little Lungs!

2009-07-10T06:38:00.000-07:00

Bennett had a pulmonology appointment yesterday. There is some bad news and some good news.

Good news first - He's doing reaaaaaally well!!! His lungs sound great, his baseline respiration rate has lowered into normal range and he has much fewer wheezing episodes!

Bad news - Our pediatrician's suspicion was correct - Bennett's illness in March caused new scarring in both lobes of his lungs that were not present when he was discharged from the NICU. This means his lungs will be all the more fragile and susceptible to further damage. And it "restarts" the clock on healing.

Neutral news - Bennett's tiny - what's new? He weighed in at 18 lbs 1 oz fully clothed a diapered (so he probably is about 4 ounces less) and was 27.25'' (that comes to less than 1/2 a lb weight gain in two months and no height gain). That places him under the 3rd percentile for his actual age of 14 months and almost exactly at the 5th percentile for his adjusted age of 1 year (tomorrow is his due date!) for his weight. For his length, he is under 3rd percentile for both actual and adjusted ages. But - the good news is that he's 50th percentile for weight to height ratio - meaning he is perfectly proportioned! He's just miniscule all over. What to do? He eats really well, still is breastfeeding and drinking 10+ ounces of whole milk a day. Even on the preemie charts, he's super tiny. The Pulmonologist would like to see him get to the 10th percentile by his second birthday, but that is more aspirational the a criteria. He's clearly healthy, so we shall not worry too much about it.

The FABULOUS news is, since he's pretty stable with his asthma meds (she gave us a new oral steriod to use when he starts wheezing), we don't need to go back for six months barring any major episodes!!!!!!

Bennett's Homecoming Anniversary!

2009-07-07T20:16:00.000-07:00

Yesterday marked one full year since Bennett came home from the NICU! What a sentimental day it was indeed! It was almost like a second-first birthday :)

I remember as if it were yesterday, getting that call from his nursing asking "when are you coming to get your kid already??" They didn't have to ask us twice!! After nine loooooooooong and difficult weeks, we were more than ready to bring our little bundle home and to finally be complete together as a family of four!

July 6, 2008 - 6 lbs, 18'' long

July 6, 2009 - guessing he's about 18 lbs and 28'' long!!!

Our little man has come SOOOOOO far!!!

Also, check out Bennett's first official 4th of July here!!

My Little Yogi

2009-07-02T20:27:00.001-07:00

Here is Bennett executing a near-perfect downward facing dog pose :)

Actually, what this crazy dude is trying to do is stand up!!!!!!!! Yesterday, he started getting on his hands and feet, but with knees bent, shaking his booty in the air. Today, straight legs! Knowing this kid, it won't be long until he figures out how to get his upper body straight up too! He's starting to let go of things for a few timid seconds at a time to stand unassisted!!!!

Standing may seem pretty mundane to you ... but to this preemie momma - standing is HUGE!!!!

Operation Crayon was a Failure

2009-06-30T20:22:00.000-07:00

Bennett's developmental nurse encouraged us last week to start introducing Bennett to crayons so he can work on fine motor development. For the obvious reasons (i.e. not thrilled about the idea of picking the wax out of his teeth), I've shied away from this venture.

Tonight, inspired by my BFF's allowing her 4 month old to color with markers (seriously), I decided to give Bennett a chance with crayons. The little toddler kind that are big and stuck in these plastic animals.

And what to my surprise (not) should occur?? Bennett had absolutely NO interest in coloring. He was content to do nothing more than chew on the crayons. Nice. Envision the scene - Bennett puts in mouth, I say "no no, yuck yuck" and he takes it out, gives me a longing look with those deep puppy dog eyes, and his little lip quivers, and he sticks it back in. Rinse, repeat.

Oh, how I wish I could buy more patience just for occasions such as this! No coloring occurred. Only lip quivering. Yep, big, fat failure!

Developmental Review

2009-06-22T06:55:00.000-07:00

Yes folks, its that time again. Bennett had a visit from his favorite nurse this morning!

She was very impressed with his improvement in gross motor skills! He is doing everything appropriate for his adjusted age of 11 months. He is crawling on hands and knees, trasitioning to sitting, pulling up and able to transition back down, and even making a few wary attempts at cruising along the furniture! His pelvis is very weak so standing and walking are probably still far off in the future. She gave us some exercises to help with that and she scheduled him for a consult with the physical therapist in August. The nurse said he will most likely be in the 16-18 month range before he starts walking, but he's surprised us before!

His speech skills are still delayed, but we still aren't too worried about it. The nurse said that oftentimes when a baby excels rapidly in one area of development, like gross motor, all other areas are put on hold. We think he says "da" and "ma" appropriately, and possibly "ba" (for bottle). Its hard to tell if he is just repeating our words. He rarely (as in once every three weeks) ever does the rolling consonants "da, da, da, da, da," etc. BUT, he can follow directions, so its clear that he is picking up language, he just isn't able yet to get it out. This also goes hand in hand with his lung issues, which makes it more difficult for him to talk. So, we'll reassess this area in August and see where to go from there.

All in all, he is doing FABULOUS!!! He's very obviously a healthy and happy boy. He's very alert and sharp! We just have to stay on top of things with these preemies, because if they start to lag behind in one area, it can cause amplified effects later on down the road, since it is all building blocks.

YAY BENNETT!!!

Don't Blink!

2009-06-18T08:29:00.001-07:00

Because if you do, you are apt to find this crazy little monkey at the top of the stairs....

I guess the lure of mommy's bracelet was just too much!

It was cute - I hear Ace say "Bennett!! How did you get up there!? Well, if you're gonna get up on your own, you'll have to learn to get down on your own too!" What a good daddy :)

Crazy Dude!

2009-06-10T20:26:00.000-07:00

Bennett has turned into one crazy dude these days!! He's pulling up on everything. He climbs in and out of the tub, up the stairs, onto the train table....

Ace has resorted to stashing him into the pack-n-play to keep him from harming himself!

"Please let me out daddy! I promise I won't climb the curtains!"

Bennett's first ride in the wagon!!!!! Carter looks thrilled, huh? They actually love it!

Ok, so he's not doing anything crazy here, but I like this pic. :)

Riding in his dump truck....

Here is a cute video of Bennett going wild during bath time. He LOVES the water!!!

Thanks for checking in!!!

What NOT to say to the mother of a preemie

2009-06-03T19:23:00.001-07:00

You'd think common sense would tell you that its not smart to say any of the following (all of which I've heard lately) to the mother of a premature baby (especially one who had a lot of complications...):

I was hoping to go early.

You are so lucky you missed out on the end of pregnancy discomfort.

You are lucky you never got huge.

But the baby is fine now, so its ok.

I also suggest avoiding complaining about pregnancy discomforts as well. You have no idea how desperately a preemie mom wishes she could have had the privilege of enduring any discomfort pregnancy could bring rather than staring at their baby suffering and struggling through the incubator glass for weeks (or months) on end. Seriously! People are crazy.

One person told me this weekend that after they hit the 32-week mark they were "done" and ready to have the baby. I bit my tongue and smiled and thought You have no idea how lucky you were that you didn't have him that early and went full term. I went full term with Carter. I know what its like. I'd take that 100 times over any day rather than have Bennett go through what he did.

Just sayin'.

How big is Bennett???

2009-05-31T20:27:00.000-07:00

SO BIG!!!!

Bennett surprised us with this new trick!! We'd been working with him for so long on this, but because of his upper body muscle tone issues, its been very very difficult for him to raise his arms above his head like this. As you can see in the video, his arms are still very tight, but he's doing it!!! We are thrilled beyond belief! He really is SO BIG!

Well THAT wasn't fun :(

2009-05-27T12:30:00.000-07:00

Yep, Bennett was in the hospital again. Sheesh! This kid likes to keep momma on her toes!

Sunday - runny nose. No big deal...

Monday - cough. Upped his nebulizer meds and added in some albuterol and chest PT just in case...

Tuesday - woke up with a bit of a wheeze, told Ace to keep an eye on it. Called the pediatrician and was told he didn't need to be seen unless the nebs weren't keep him clear for 4-6 hours, eating dramatically decreased, was having retractions, or losing color. He progressively got worse as the day went on, so I decided to take him to the ER for a chest x-ray just in case...

Good thing I took him! His oxygen saturation was fine (high 90s), but the x-ray showed pneumonia in both lungs. Lovely. His nasal mucous tested negative for RSV and they weren't able to identify any virus from it. They weren't able to draw blood because his veins were constricted from the breathing treatments they gave him, so they weren't able to do a blood culture to see if that gave us insight as to the origin of the pneumonia.

The doctor admitted him overnight to observe and to get a jump start on the pneumonia with IV antibiotics. He satted fine all night, but boy was he hyper! The albuterol makes him very tachycardic (elevated heart rate) and punchy. I'd get him to sleep, lay him down and his eyes would fly open and he'd jump and give him this smile and look of a crazed person. It was actually kinda funny. Except that he only slept maybe 6 hours the entire night. Four of those hours were in my arms. Which means, I slept only 2 hours. FUN FUN FUN!!!!

He was doing great this morning, so they discharged him (YAY!!!) with a bunch of meds (booooo!). Praying his lungs clear up FAST!!!

Bennett's First Trip to the Beach!

2009-05-25T06:58:00.000-07:00

Saturday, we drove down to Virginia Beach to join Ace's family in celebration of my nephew Ethan's FIRST BIRTHDAY!!! Saturday night, we went out to dinner for his birthday. Here are the boys eating. They kept stealing food from each other - it was SO cute!

Sunday morning we headed to the beach! It was overcast and a little chilly, but I'll take that over oppressively hot and no relief from the sun!
Bennett LOVED the sand. He only ingested 1/2 a pound of sand!

I think this is such a silly picture of Carter :)
Carter was not afraid of the freezing water - he played in it for hours!

He is after all, a Pisces! Charlize and Bennett
Ethan staring intently at Carter
The one year old boys!!!
Mommy and her goofy boys!
Daddy and his boys. Bennett wasn't a fan of the frigidly cold water.

Happy Memorial Day!

Precocious (warning: baby bum)

2009-05-21T09:59:00.001-07:00

A few nights ago, I stood Bennett up against the side of the tub and turned around to grab his towel and washcloth from the linen closet. When I turned back around, I observed this little monkey trying to climb into the bath tub...

He actually got both feet up on the stool and was about to go over!

When I pulled him down from the stool, he hooked his arms back over the side of the tub and got both of his legs under him! Of course, the pictures are delayed and he wouldn't do the same gymnastics with the camera on him.

This kid never ceases to amaze us :) He can barely push up on his hands and knees to crawl, but he can climb into a bathtub. Go figure!

Unexpected

2009-05-15T19:07:00.001-07:00

Bennett's first birthday has unearthed lots of emotions I had sequestered over the past few months. The first birthday is an emotional event for any baby, to be sure. Its no different for Bennett. Except for the first year wasn't full of all those wonderful magical memories we had during Carter's first year. Rather, it consisted of a total of 11 weeks hospitalization, an average of one doctor appointment every other week (sooo not kidding about that - imagine the co-pays!), 6.5 months on oxygen, 6.5 months of 8 daily meds, and 3 daily meds after that, worry, worry, and more worry over his failure to grow at an acceptable rate, worry about his bone development, motor skill, neurological development, 8 months of house-arrest in a vain attempt to keep him healthy. Those happy innocent memories - its yet another part of having a baby that we missed out on. And that makes me sad.

Things are definitely getting much better these days, particularly since we can take him out into the world now without paralyzing fear of him getting sick. Today, I took Bennett shopping with me at the Mall! He got a gift card for his birthday and I figured today was a great day to cash it in for some new duds. When I arrived at Janie & Jack, I was the only shopper there. I was taking my time debating between two choices. I never, literally NEVER, go shopping anymore, so I was enjoying it. As I was going through my antics, another couple came in pushing their sleeping baby in the stroller. The baby was bigger than Bennett. They seemed so happy. Giddy. Picking out clothes for their new baby. They were buying size 6-12 mos clothing - the same size I had in my hand for Bennett. The store clerk asked how old the baby was - 5 months. My heart dropped. A 5 month old is bigger than my one year old :( I said a quick prayer thanking God that this couple is blessed with such a healthy thriving child and (presumably) do not know the pain and struggle that comes with having a child with the challenges Bennett has. And then I thanked God for Bennett being as healthy and thriving as he IS!

Anyway, for some reason, telling people that Bennett is 1 is much more difficult for me than saying 11 months, for example. We all know what 1 year olds are *supposed* to look like. And its painfully clear that Bennett doesn't look like that. Or act like that. I try to not let it bother me; to remind myself that he really should only be 10 months old now. Yet, he doesn't even look like a 10 month old. If he were 6 months old right now, he would be 50th percentile for his weight. Its not so much that he's so small that bothers me - its that at a year old, all you have to do is look at him to know that he is behind. When he was born, there was so much emphasis put on "catching up by age 1." It became apparent pretty early on with the issues he was having that wouldn't happen. I guess I just didn't expect him to be so far behind still.

So, I guess the whole point is that unexpected emotional challenges still crop up for me time to time. Let's see if the "catch up by age 2" standard they've now revised to will stick. GROW BENNETT!!!!!

Please pray for the Freeman Family

2009-05-12T07:27:00.000-07:00

Many of you have been following the blog of Kayleigh Anne Freeman. This precious angel passed away last night and is now at peace and without pain in the arms of our Heavenly Father. Please pray for her family who have been left behind that they can find peace and solace in this unbelievably difficult and painful time.

Bennett's First Birthday Party

2009-05-11T19:43:00.000-07:00

Bennett had a blast at his birthday party!! The "theme" was "B is for Bennett." I used the colors red, lime green and turquoise blue.

Bennett and his cousins Charlize and Ethan.

Bennett loves balloons!
I made these frames of different pictures of him with a different "B" adjective. B is for blessed, beautiful, bright-eyes, bouncing, brave, etc. The favors were all things that start with the letter B!
ICupcakes are the easiest cake ever! If you can't tell, they are in the shape of the letter B.
Smiling, drool and all!
He got a lot of wonderful presents, but his all time favorite is this spinning V-tech farm toy!
And of course, his new soccer ball! The boy loves balls!
Blowing out his candle!

Not so sure about his cupcake.
Ok, its not that bad...
Thank you to all who joined us Saturday for helping make his first birthday celebration extra special! This little boy is SO loved!!!

Here are some portraits we had done last week:

Bennett's 1 Year Stats!

2009-05-08T14:07:00.000-07:00

We had Bennett's 1 year check up today. He will be 10 mos adjusted on Monday, so that works out nicely.

His stats were:

Weight - 17 lbs 5 oz - which makes me VERY happy considering he was 15 lbs 5 oz when discharged from the hospital on 3/22 - thats 2 lbs gain in less than 2 months!

Height - 27.25 inches

He is below 5th percentile for actual and adjusted age for both weight and height. The chart she had didn't have the 3rd percentile line, but she said she suspects he's under the 3rd percentile for actual age for both.

Head Circumference - Can't remember what it was but he is 20th percentile for ACTUAL age for HC!!!! Big headed baby!!

She had some of the same developmental concerns as his therapist, but said that she agrees that its not to the point where we need to consider additional therapy because he is accelerating so fast in his development and doesn't show any very concerning signs.

We delayed the MMR shot because he's so small and because preemies have a higher risk for autism, so I didn't want to chance it. We'll do it at 18 mos instead.

His lungs sounded beautiful and clear! We'll just keep his meds the same for now. She won't need to see him back until August! She said she will be prescribing him the Synagis shots again for next year since his lung disease is still persistent in the right lung and considering how sick he got in March. We may have a battle with the insurance company b/c the shots are $1700 a piece and they usually don't authorize it for a second year, but she thinks in his case they will realize the value in it. Much cheaper than a hospitalization that is for sure!

All-in-all I'm quite happy!!! I know I keep saying this, but wow he's come far! Just 6 months ago he still had a lot of major medical issues - was still on oxygen, still having bradycardias, ravaged by reflux, had major calcium deficiencies, wasn't growing....he's amazing!!!

HAPPY BIRTHDAY BENNETT!

2009-05-05T05:00:00.000-07:00

My baby boy is ONE today!! Wow. I cannot believe a whole year has passed! So many memories and emotions are ruffled up today! Care to take a stroll with me down memory lane???

May 5, 2008 - Bennett Steven Custodio is born

One Month Old

Two Months Old - Bennett's Homecoming 7/6/08

Three Months Old
Four Months Old
Five Months Old
Six Months Old
Seven Months Old
Eight Months Old
Nine Months Old
Ten Months Old
Eleven Months Old
HAPPY FIRST BIRTHDAY BENNETT!!!!!!!!!

And if you feel like BAWLING your eyes out - here is the montage we put together of his first year (this will be shown at his party too):

Bennett's Journey

We Marched for Babies!!!!

2009-05-03T13:43:00.001-07:00

After many months of great anticipation, the day arrived for us to March for Babies!!! Bennett's Team included 15 walkers (another 5 sat out because of illness or the rain), and raised almost $3000!!!!! We are blown away! Our original goal was just $1000! Thank you to everyone who donated - it means so much. The March of Dimes is such a worthy cause!

It was pouring rain most of the march, but we survived with ponchos and rain covers for the strollers.

Here is mommy and Bennett before the March.

And we're off!!!!!

Bennett was rather apathethic to the whole ordeal. He just chilled and sucked his thumb the whole way (but refused to nap, of course!).

Carter kept yelling at whomever was pushing him to get to the front of the group because he wanted to be line leader!!

Here we are next to Bennett' s sign on the Miracle Mile!

They are saving this sign and will put it back up again for the March next year!

The finish line! This is our whole Team!

We had a GREAT day!!! It was the perfect kick-off the the celebration of Bennett's birthday on TUESDAY!!!

I cannot resist...

2009-04-23T14:05:00.000-07:00

Another Developmental Review!

2009-04-20T09:02:00.000-07:00

Bennett's developmental nurse came to visit us this morning. She evaluated him along the standards for an 8 month old. His actual age is 11.5 months and his adjusted age is 9 months old. He is meeting most developmental milestones for an 8 month old. However, he still shows signs of weak upper body strength and now weak abdominal strength. The nurse was not all that concerned about it at this time, however, because he was in the hospital for nearly 2 weeks without the ability to practice and work on strengthening. So, the plan is to wait to see if he "catches" up a little more by his next appointment. If not, then he will begin receiving regular in-home physical therapy. She gave us a bunch of new exercises to do with him at home to see if we can help him make progress.

He is also showing signs of a verbal delay. But again, this isn't terribly surprising or worrisome since he was on oxygen for nearly 2 weeks in March, and respiratory problems are notorious for interfering with speech development. Because of his respiratory history, she said she recommends we wait until at least August before moving forward with speech therapy, as it can sometimes "stress" a baby out, assuming he doesn't have backward progression. I feel pretty confident though that pretty soon his speech development will take off and it won't even be a concern at all. He is making a few consonant sounds like "da" and "ba" but doesn't really do the rolling "da da da da" sounds.

We also discussed his growth expectations for the next year. She said that he should be slowly creeping up toward a firm position on the growth chart over the next few months. She wholly concurrs with our Pediatrician's recommendation that we keep him on breastmilk and formula until at least 18 months, and perhaps longer depending on what his growth does.

I myself and pretty pleased with his developmental progression in the past two months and don't feel worried at all about any of this stuff. Bennett's had a rough year - all things considered, he's doing pretty stellar!

Mad skillz!!!

2009-04-15T07:28:00.000-07:00

I'm too giddy about this not to post about it!! This morning, for the first time EVER, Bennett was able to push himself up to sitting position from crawling all by himself!!!!!!!!!!! Ace and I both saw the whole thing play out and we just errupted into cheers!! Bennett was like "what?? what did I do?" lol. I'm SO proud of this boy!!!

Last Synagis Shot of the Season!!!

2009-04-14T08:12:00.000-07:00

Do you know what this means people??? It means that RSV season is almost over!!! Starting the end of April, we will be able to actually take Bennett into....PUBLIC (gasp!!). Can you believe it??? I can't wait!

Today Mr. Bennett weighed in at 16 lbs 14 oz! What a chunker ;) At this rate, he'll surely be 17 lbs by his first birthday! Maybe even 17.5 lbs :)

Thankfully, there isn't much new in the world of Bennitto. He's started repeating the "da da" sound to us when he feels like it. He's a speed demon crawling, and is even using his legs now. Belly still isn't above the ground, but we're making progress! His next developmental review is in a week!

Happy Easter!

2009-04-12T19:16:00.001-07:00

Happy Easter to all!! I hope you had a very blessed day. Our Easter was a whirlwind, but a lovely day. Carter decided today was a great day to sleep in (of course), and didn't get up until nearly 9 a.m. We had to leave by 10 a.m. for mass, so we had to rush things a bit this morning.

The boys' Easter baskets
Carter came down this morning and started picking up the eggs that were "hidden" around the house and said "Mom, you shouldn't leave eggs just lying on the floor, that's messy!" Once he got the concept that it was a hunt, he got excited and ran through trying to pile up as many eggs in his arms at once that he could!

Unfortunately, today was not a great day for pictures. We couldn't seem to get the boys to be happy and smiley at the same time. No family shots!!! But here are my best attempts at capturing their adorable Easter outfits:

I love Bennett's static hair here. Carter is chewing a big piece of gum, lol!

Bennett has his last Synagis shot of the season on Tuesday morning. I'm eager to see what he weighs! Today at church, there was a couple next to us with a baby about the same size as Bennett. I asked how old she was, and they replied she as almost 6 months. When the dad asked how old Bennett is, and I said 11 months, all he could say was "wow." I used to explain he was a very early preemie, but I just didn't feel like explaining it today. He looks like he's getting really big to me when I don't compare him to other babies!!!

11 Months!!! sniff

2009-04-05T06:12:00.000-07:00

Only one month left! My mind cannot even comprehend it! Perhaps, that is self-preservation in operation, as the thought of hitting that monumentous milestone is both terrifying and amazing! I'll spare you the sappiness. I have got to get my butt in gear and start preparing for his party!! It will be in the afternoon on May 9th! I hope to get invites out this coming week! What a celebration that will be!

Here are some pictures of our eleven month old baby!!!

Hanging out in the yard yesterday!

Napping with daddy!
Yum.....spinach!!! This kids LOVES table food!!!

Update on the sickies - Bennett has been fine if we keep him loaded up on Motrin and Tylenol. If we delay his dosage, the fever creeps back in. Hopefully, he'll kick this bug in the butt soon!

The good news is...

2009-04-03T10:40:00.000-07:00

...which I forgot to share in my post this morning....

Bennett weighed in at 16 lbs 8 ounces yesterday!!!!!! That is what he weighed when he went into the hospital on March 8th. He was down to a little over 15 lbs when discharged on March 18th. That means the Incredible Hulk has gained over a pound in the two weeks he has been home!!!! YIPPEE!!!!! I guess I can stop giving him 25 calorie/ounce bottles at night now, huh???

And he's happy as a clam today. No fever or irritability. The Pediatrician called this afternoon to check up on him and said to try weaning down the Tylenol and Motrin and see if the fever creeps back up. Eeekk!!!!!

As an aside - I got a wild hair to create my very OWN blog so you all can hear more nonsenical rambling from me :) Check it out! http://www.ellesguidetolife.blogspot.com/! Thanks!

Not Again!!!!!

2009-04-03T07:54:00.001-07:00

Yes people, Bennett is sick AGAIN! He spiked a fever yesterday afternoon and was breathing a little fast (for him), so we took him to the Pediatrician. The GOOD NEWS is that Boo Boo's lungs are perfectly clear!! WOOO HOOO!!! The bad news is that the Ped. did a CBC and called us at 10 p.m. last night (its never good when you get a call from the dr. that late...) saying his white blood cell count is elevated and his reticulyte (newly forming red blood cells) count is low, so we need to be very careful and take him to the ER if his fever goes to 104* or more. The highest it has been thus far is 103*. I was a nervous nelly all night just waiting for the flare, but thankfully he stayed happy and cool all night long. We're cycling the motrin and tylenol in hopes of keeping the fever down. Hopefully, he will fight this bug off without incident this time!

Baby got BACK!

2009-03-25T19:22:00.001-07:00

Well folks, it appears as though B-boy has inherited his momma's "assets"! He's got such a sqooshy tooshy!!

This is a funny video clip. Carter is fascinated by the baby bum too, lol! And Bennett gets to show off a bit of his mad Army crawling skills!

And ya'll remember Piglet don't you?? Baby boy is getting SO BIG!!!

We put Bennett in the laundry basket for a photo op and Carter had to jump in too!

Playing with Grandpa - he cracks these kids up!!!

Thanks for looking!!!!

Wow, a whole year has come and gone!

2009-03-24T06:57:00.001-07:00

The one year anniversary of my water breaking passed on Sunday without me even realizing it! I was really nervous that I would be upset and sort of "haunted" by the day, but I was too busy to notice! I can't believe all that has happend in one year - so many highs and so many lows. God has been good to me though - Bennett is an amazing child and I'm so thankful that he let me take on this journey!

Ok, enough sappiness. I have some good video footage of Bennett's Army crawling to post later, so stay tuned!

A scary lesson to be learned!

2009-03-21T09:55:00.000-07:00

Bennett has recently become incredibly mobile. He can army crawl with the best of them right now! And he is, of course, SO interested and enthralled in everything that is Carter's. Unfortunately, as Carter gets older, his toys get smaller... See where I'm going with this??? I make a point to make sure the floor and reachable areas are free of small parts whenever I let Bennett loose, but this morning I failed in that endeavor. There was this small clear suction cup that goes to one of Carter's spider man toys on the floor that Bennett thought looked tasty. I looked down and see Bennett turning blue!!! They make no sound when they are choking! I flipped out and got the part of out of his mouth, but WOW we were both very shaken up by this!!! So, apparently, vigilance is not enough. This kid is going to require an eye on him every second he is on the floor.

Moms with older kids - how do you keep the small parts away from the babies?????

Bennett's Follow Up was GREAT!

2009-03-20T11:52:00.000-07:00

I took Bennett to his Pediatrician today to follow and make sure his lungs were still clear - and she said they sound beautiful!!! We only have one day left of antibiotics, but will continue with the breathing treatments for a while to be on the safe side. We got a new nebulizer today too! Ours was from Carter, about 3.5 years old! It was starting to have an odd burning smell and taking like 30 minutes to nebulize one respule!! The new one is so fancy and modern looking, lol!

The other great news is that he's gaining weight again! He was up 4 ounces from Weds morning!! We've been adding extra calories to his nighttime bottles to help him out a bit.

Carter had his 4 year check up yesterday (the Ped. will soon be able to retire off of us....)! He was 37.5 inches tall (5th percentile) and 35.75 lbs (dressed, at 50th percentile). His lungs sounded good and clear too (he has some asthma/reactive airway disease), and everything is looking great with his kidneys/urine culture (he has hydronephrosis detected in utero), so we don't need to do another ultrasound until he is EIGHT!!! YIPPIE!! He's hitting all his milestones and is advanced in verbal and cognitive skills (he is MY child after all, he he he!!!) :) He got two immunizations in his thigh and cried like a baby. Then he was embarassed for crying! He said to me on the way home - "Mom, I forgot to say "eek!", I wasn't supposed to cry!" What a cutie trying to be so tough! Its freaking me out to think that in a year and a half I'll be sending my baby off to Kindergarten!!!!!!!!!!!!

Bennett is HOME!!!!!!!!!!!!!!!!!!!!!

2009-03-19T09:42:00.000-07:00

What a wonderful day yesterday was!! Late yesterday afternoon, the doctor came in and said he felt good now about sending Bennett home! He was saturating in the mid 90s, even while sleeping! It was actually kind of touch-and-go because after telling me he could come home sating 88 or above, he came back that afternoon and said no, he had to be over 92. I was SO nervous I barely slept the whole night for fear he'd start to desat and buy himself another day in the hospital. But he did GREAT!!!!!

He is doing great at home. He is still on a lot of medications and needs breathing treatments every few hours, but hopefully in a few days he can wean off those too! Now we need to work on his appetite! He weighs just above 15 lbs right now, having lost nearly 1.5 lbs from this hospitalization (he was just over 16.5 lbs when admitted!). This is frustrating because as you know, his weight is a constant uphill battle for us, and now I feel like we've just been knocked back a few pegs. He still isn't eating his normal intake, so hopefully we can help him with that over the weekend. It does not help that my milk supply took a major hit either - from the stress, lack of sleep, lack of privacy to pump, and poor nutrition and hydration over the last week and a half! Bennett hates formula, so I'm pumping like a mad woman trying to get my supply to increase again! Luckily, I'm able to work from home the rest of this week, so I can focus on getting our life back in order before returning to chaos.

In other news....my friend Kelly is bringing her son Trig home after a 4.5 week NICU stay tomorrow!!!!!!!!!!!!!!!!! I'm sooo sooo happy for them! YAY TRIG!!!!

And finally, Bennett wants to wish a very very happy birthday to his Grandma today!

Whispering so I don't jinx it....

2009-03-17T09:38:00.000-07:00

Bennett has been off oxygen since 8:20 this morning and doing well!!! Some desats to the low 90s/high 80s during sleep, but the doctor told me that with bronchilitis, as low as 88 is ok!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He just MIGHT come home tomorrow!!!

Bennet...Bennett...Bennett....

2009-03-16T20:28:00.000-07:00

What ARE we going to do with you????

The awesome news is that Bennett has made a lot of progress!!! His oxygen requirement is down to between 1/4 and 1/8 liter, which really is hardly anything but a puff. He was on room air for about an hour today and was doing fine, but when he went down for his nap, he started to desat, so they bumped him up to 1/8 liter. He did good on that until he crashed for the night (literally) and now he is on 1/4 liter again. They scaled back his breathing treatments from every 2 hours to every 4 hours. The doctor said that if things continue to go well, that maybe he can come home on Wednesday. In one instance, I feel so confident about it, and in the next think no way he'll be off oxygen by then. This is so tough!!! He took forever to come off oxygen after he was discharged from the NICU, I'm afraid that will happen again :(

He is definitely back to his happy, active, and mischevious self!!! The hospital brought a tumbling mat into his room so he can get on the floor and crawl and roll and play. He was getting so irritable when the only options were the crib and our arms! And in other news, Bennett has started pulling to stand on the crib rail and getting on his hands and knees like he's ready to take off crawling! He also reaches up for you when he wants you to pick him up! These are all delays he had, but now he's conquered them!!! He is so ready to bust out of this place so he has full range to practice his new skills!!

So, please cross your fingers for Wednesday. We're all so exhausted at this point!

Bennett has been transferred to a special hospital

2009-03-12T17:13:00.000-07:00

Yesterday evening, Bennett began to go into severe respiratory distress, despite being on tons of medications and 2 liters of oxygen, plus an oxygen tent. His heart was showing signs of distress and he was working so very very hard to breathe. The doctor was afraid that he would "crash" if it went on much longer. They don't have a level 3 PICU at our local hospital, so they wouldn't be able to support him if he needed to be intubated or on any higher level of support. The repeat x-rays showed that the pneumonia had in fact spread, not improved. So the decision was made to transfer him to the Children's Hospital where his pulmonologist is based, and where they have a high level PICU, if God-forbid, we needed it. This hospital has a special floor just for kids with respiratory issues like Bennett has.

So, we were transferred last night. Bennett was alert and just looking around the whole ambulance drive, it was so cute! They monitored him for a few hours after we got there to determine if he needed to go straight to ICU or if we could start with immediate care. They decided the immediate care floor would be appropriate, and we got settled in and met with a bunch of doctors and came up with a care plan. They have him on new antibiotics and new lung meds. He is still on a good amount of oxygen, but seems much more stable. He even perked up some this afternoon, ate a 3 ounce bottle, a part of a banana and talked to us for a while! It was so nice to see him feeling better!!! I am realllly praying he came home soon! The pulmonologist thinks it will be a few more days.

Today is Carter's FOURTH birthday!!!!!!!!!!!!!!!!!!! I can't believe it! I came home tonight and Ace is at the hospital with Bennett so I could see my baby on his birthday! I haven't had more than 3 hours of sleep a night since this started, so I may stay home and sleep tonight...if I'm brave enough!

Here are some pictures from our adventures thus far...

This is Sunday night after two bags of IV fluid - a VERY swollen Bennett!!!

This is Monday - Bennett was trying to play, but he was just too tuckered out!

This is the boy in the bubble (aka oxygen tent - it was like a spa treatment!)

Here he is passed out in daddy's arms - he sleeps 98% of the day...

And here he is this morning at the new hospital in his cute little blue hospital gown - fast asleep!

Thanks for all of your prayers. Hopefully, Bennett will be home soon and on his way to a VERY healthy rest of the year!!!!

Bennett is in the hospital

2009-03-10T07:08:00.000-07:00

Poor little sickie boo boo bear :(

2009-03-07T06:43:00.000-08:00

Bennett is sick again :( Its just a mild cold that would be a mere annoyance to anyone else, but its wreaking havoc on his damaged little lungs. It breaks my heart watching him struggle to breathe. I had to continuously give him nebulizer treatments through the night with his rescue medicine. But the good news is that it seemed to help. Nothing is scarier than when you neb a kid and they are still struggling. I hope and pray this illness goes FAST. He's trying to stay happy and cheery, but I can tell he just feels like crap.

Please send Bennett some healthy happy lung vibes!!!!!!! Thanks.

Bennett's Pulmonology Appointment Yesterday Got Canceled

2009-03-03T08:53:00.000-08:00

For good reason! One being, we got about 6 inches of snow! And second, and much more importantly, momma was busy helping her best friend Melissa labor!!!!

Bennett's best friend Elijah was born last night at 11:51 p.m. after a verrry long and difficult labor!!! I was honored to be a part of Melissa's labor and help her through it all. I didn't get to stay for the birth, as I had been up since 5:30 a.m. Sunday morning and was going on nearly 24 hours since I saw my boys. I felt like once she got the epidural at 3:30 that she was in good hands and could complete the journey without me. I was so bummed about it though!

I'm SO happy for Melissa and Kenny. They did a fabulous job birthing Elijah and I know without a shadow of a doubt that they will be fantastic amazing parents! I'm so excited to embark on the journey of motherhood together with Melissa now!!!

You can see the full birth story (and see a pic of me without make up on and going on 40 hours of no sleep!!) at her blog - www.melissaspregnancyjournal.blogspot.com.

Elijah and Bennett are 10 months apart and as of right now, only 9 lbs apart!! I really pray they become the best of friends!!

A good cure for a case of the Mondays!

2009-02-23T09:29:00.000-08:00

Bennett doesn't care what day of the week it is! He's always cheerful and sunny!

And don't anyone try to tell Bennett he's behind or can't do something....this weekend he's started saying "ba ba ba" and "da da da"!!!!!!!!!!!!! Ace and I can't get enough of it and huge smiles overtake our faces when we hear it! We were bracing ourselves for speech delays and OT in our near future, but if he keeps this up, he won't need any intervention!

So much for low muscle tone...

2009-02-18T08:25:00.000-08:00

This morning, Ace heard Bennett shouting (for an example of his signature shout see the last video clip posted below...), so he went into the nursery to get him and found him.....

hanging half way over the crib rail!!!!!!!!!!!! Somehow he was able to pull himself up that far! Granted, the rail was down, so it was only a matter like 6 inches, but we didn't think he was able to do something like that! SCARY! And lesson learned for sure!!!

This kid is going to prove us all wrong, isn't he? Low muscle tone - HA!

Developmental Review

2009-02-17T07:23:00.000-08:00

Bennett had a visit from his Developmental nurse this morning for his monthly developmental review. He is doing really well! She reviewed him on the standards for a 6 month old because he is only 7 months adjusted and it only goes in 2 month increments, so the next set of standards is 8 months. He is hitting 90% of the 6-month standards, and the ones he isn't hitting are the "high end" markers, so its not worrisome.

She did express some concern about his low muscle tone in his upper body. He's had this forever, but she said we're going to start seeing it interfering a lot more with his developmental milestones from now on. She told us to make sure he gets a LOT of floor time to play, Army crawl, push him on his hands, etc. She also wants us to make him reach up for us to be picked up, continue doing his arm exercises that we've been doing for the tightness in his arms, and play lots of "So Big" with him. She also told us to NOT use the Jumperoo with him anymore and to greatly limit the amount of time we allow him to spend in the exersaucer as this inhibits his ability to work on upper body strength, while allowing him to overcompenstate with lower body. It makes sense. He just loves his exersaucer and Jumperoo though! She said that if we don't start seeing some improvement in the next few weeks, that she will have the physical therapist come to start working with him.

The next big milestone he needs to work on is pulling himself up to standing. She said until his upper body strength is increased, he won't be able to do this.

The other slightly concerning issue is verbal skills. He will occassional use consonant sounds like "ba" or "ga" but not very frequently. She would like to see more of this and would like to see him start the "ba ba ba" rambling more. She said that we'll leave this as a watch and see item for now since he has had a lot of respiratory issues, it tends to take a little longer. She told us we should repeat any sounds he makes to encourage him to continue and to babble to him in consonant sounds to try and get him to mimic.

All-in-all he's doing really well! Considering all the challenges he had the first 6 months, she is really pleased at how he is doing. None of these issues are really very concerning, and they are really classical preemie issues. Nonetheless, we do want to stay on top of it and help him close the gap in his adjusted and actual age sooner rather than later.

And now for a token picture of Mr. Beautiful Eyes to reward you for reading my rambling thoughts!

I hope you all have a very blessed week!

Bennett has a new friend!

2009-02-16T06:15:00.000-08:00

My friend Kelly gave birth yesterday at one day shy of 33 weeks to a little boy - he is named after his daddy but will go by Trig. She has been having pre-term labor for what seems like forever, but the baby was recently diagnosed with Interuterine Growth Restriction. It seems that they discovered the placenta was pulling away from the uterus, which probably is what caused the IUGR, so they went ahead and delivered. Trig was 2 lbs 15 oz and 16.25'' long. He is on CPAP right now, but doing great!

Please pray for Trig to thrive and grow and get the heck out of the NICU and home with mommy and daddy. It has been such a long road to motherhood for Kelly. I hope this new leg of their journey is unimpeded and smooth!!!

Bennett's 9 Month Stats!

2009-02-12T13:52:00.000-08:00

We had his 9 month well baby today! He weighed 15 lbs 9 ounces and 26 inches! That puts him at less than the 5th percentile for both actual and adjusted (7 mos today) ages. His weight is staying about the same in terms of how far below the curve it is, but his length is starting to creep closer to the 5th percentile curve! His head was 44 cm and that puts him at 15th percentile for actual age!! I make 'em with big noggins The Ped. wishes he were climbing up a little faster on toward the curves, particularly for his adjusted age, but what can we do?? He drinks 26-30 ounces of breastmilk or formula a day - which is spot on. He also eats two meals of solids, and is already starting to eat some "big people" food like pieces of bananas, peaches, peas, noodles, that are soft and easy to smash. So she is really happy with his eating. And he sleeps well. He usually either takes two 2-hour naps a day or three naps of about 1-1.5 hours a piece. And he sleeps from about 7:30 until 7:30 a.m. with two feedings (dreamfeed at 11 p.m. and wakes at 5:30 a.m.) She said his sleep was good too.

Developmentally, he's at about the level of a 7.5 month old, which is good. She said she expects to see him closing the gap between his adjusted and actual age now, but if he doesn't, that is ok. His main delays are verbal and fine motor, which are the most common areas of delay in preemies.

We discussed his calcium levels a bit - which show that his bone growth/calcium levels are borderline low, so we're going to continue treating that. And we're keeping him on his asthma medications until June and then experiment and see if we can stop it until September.

I asked her when we would be able to stop isolating him, and she said that in our area they have seen no new cases of RSV lately, moreso the flu, so she said we should continue to avoid large groups and small children, but we can take him to church or other public places so long as we keep our distance from people! YAY!!!

Happy 9 months to Bennett!

2009-02-05T18:29:00.000-08:00

Happy 9 month-birthday to Bennett!!!! I'm trying really hard not to be "sad" that he's growing up so quickly. Its really hard though!!!!!!

Here are my boys cuddling together this morning!

e "
This picture makes me giggle :)

And look at Bennett's new trick!!!!!!!!!!!!!!!!!!! He still can't be "trusted" to sit by himself and will throw himself over without warning, but he is getting more and more stable and sits for longer periods daily!!!

I can't even begin to tell you how thrilled we are that he's finally hit this milestone! We were really starting to get worried that his muscle tone issues were interfering, but he's doing great!

Love this picture!!

That SMILE!!! MELT!

Cuddling with his Lola - a sweet picture!

Smiley boy!!! I swear to you, he is the happiest baby ever!

His official 9 month appointment is next Thursday, so I'll have the details then about his growth and developmental status. I am anticipating a great appointment!!!! Its amazing how much things have improved from his 6-month check up.

Sweet sunny smiles!

2009-02-02T10:14:00.000-08:00

Here are some great pictures to celebrate a warm and sunny day in the dead of winter (and darn that Groundhog....)! They are from my iPhone, so I apologize they aren't a little grainey.

Sorry I haven't posted in a while - the busy-ness of life has gotten hold of me! The great news is that Bennett's cold is all better and he's doing great. We will continue the inhaled steroids daily through the winter though. Thats a LOT of fun (**insert sarcasm**).

Bennett will be NINE months old on Thursday! Can you believe it????? Blows my mind and illicits a tear or two. His 9 month well-baby check up is not until the 13th, so I won't have stats until then. He's been working on developing some new skillz too, but I won't bore you with those details until my big post about his check up :)

Mel & Me

2009-01-25T06:24:00.000-08:00

Yesterday, I co-hosted a baby shower for my best friend in the entire world - Melissa. She is 33 weeks pregnant with a little boy who will be named Elijah!

I wanted to share this picture, b/c it literally brings tears to my eyes to see how "far" we have come over the years.

Melissa and I met on the first day of freshman orientation for college in June 1999. We instantly clicked and have been the best of friends ever since. She and I are the female version of soulmates! Anyway, we're coming up on our 10th anniversary of our friendship this summer, and I'm in awe of how much we've been through together. Mel was my Maid of Honor in my wedding in 2003. She was there to help me through my labor and delivery with Carter, was there for me every step of the way through law school and was my biggest cheerleader at my graduation. She is Carter's Godmother. I was her Matron of Honor in her wedding in 2007. We were each others' support system as were were trying to get pregant and both encountered some fertility issues. She was the first person (after Ace) that I told when I was pregnant with Bennett (I was terrified of miscarrying again, so we didn't tell anyone other than Mel until we saw the heartbeat!), and she called me right after she got her positive test with Elijah!!

She was at the hospital with me at least once a week the entire time I was hospitalized with Bennett. She dropped everything she was doing and rushed to my side every time we thought it was "time." She was an uplifting force through Bennett's NICU stay. We've just been through every "up" and "down" together over the last 10 years.

Anyway, I am SO excited for baby Elijah!!! Melissa has asked me to be a labor support person for her, and I can't wait! I love how much we've "grown up" together. I can't wait to see her through such an amazing and exciting time in her life! And I can't wait for a new baby to love!

Ok, enough gooshiness :)

TWOFERS!!!

2009-01-23T05:40:00.000-08:00

Tuesday morning Bennett woke up with his first TWO teeth!!!!!! He's been working on those suckers for a while now and is a much happier guy now that they are through! I am trying to get a picture, but its hard b/c its the lower two front, and when I try to get a picture of them, he starts licking my fingers, lol!

He's 8.5 months old - the same age as his big brother was when he got his first four teeth! I guess my kids are just "efficient" teethers!

Update on Bennett

2009-01-21T14:08:00.001-08:00

Bennett is oxygenating just fine despite his severe cold. He is,however, wheezing heavily. His Pulmonologist diagnosed him with asthma a long time ago but I was holding out hope that he wouldn't have it too. Oh well. So, his Pediatrician is putting him on Pulmicort twice daily, an oral steroid once daily, and antibiotics. And we are to continue using the Xopenex (like an albuterol) every 4 hours for the next day, then decrease by intervals of 2 hours over the next few days. If he becomes unresponsive to the Xopenex or starts to have retractions, I'm to take him to the ER immediately to make sure he's maintaining his o2 levels well and to rule out RSV. She didn't test him for RSV today b/c he had just had his Synagis shot a week ago which contains RSV antibodies, so it could trigger a false positive. But she doesn't think he has RSV since he is responding well to the Xopenex. He's a little more tachypnic (breathing rapidly/short of breath) than usual for him, but she said that should get better as his cold symptoms go away.

Thanks for the good thoughts!! I tell ya - the first real illness with a preemie with chronic lung disease is SCAREY!

Bennett is sick :(

2009-01-20T17:00:00.000-08:00

He had a slight cough this morning. By the time I got home this afternoon he was full on wheezing. I gave him some breathing treatments and his lungs are clear now, but he's still breathing very rapidly. I'm taking him to the doctor tomorrow, but we could use some "strong lung" prayers tonight. I'm very nervous and am wishing we still had our apnea monitor and oxygen right now. I seriously doubt I'll get any sleep tonight. I guess this is the first test for how much an impact the chronic lung disease will have.

Cute videos!

2009-01-17T05:27:00.000-08:00

Here are some cute videos I got this morning of the boys. The first is Carter singing a song about winter that he learned in school this week. He is dying for snow - so hopefully we'll get some non-messy snow for him this weekend.

This is a video of Bennett's new Jumperoo skills. I really didn't think he was ready for it yet, but we put him in it on Monday b/c it was in the basement and needed a place to put him for a second and he took off!!!!! He's growing up so fast!

Please also visit the post below about the March for Babies. I would be so thankful if you would sign up to march with us for Bennett's Team! Hope everyone has a fabulous weekend and stays WARM!

Join Bennett's Team!!!

2009-01-15T19:36:00.000-08:00

Ok everyone - Mark your calendars!!!! In honor of Bennett's first birthday, on May 3, 2009 we will be participating in the March for Babies sponsored by the March of Dimes at Camden Yards!!! The March of Dimes is a wonderful organization that works very hard to prevent premature births through research, lobbying and education.

I've created a team - Bennett's Team! My personal fundraising goal is $500. Our team goal is $1000. Please join our team and march for Bennett and all other preemies born and those to be born. Visit our team page at http://www.marchforbabies.org/teams/629124 to sign up!!

14 oz in 14 days!

2009-01-13T09:01:00.001-08:00

At Bennett's last appointment, I was so upset that Bennett had only gained 4 ounces in 3 weeks. That was on the 31st. So, we started waking him at 11 p.m. to give him a dreamfeed to get in extra calories, and he started waking at 4:30 a.m. on his own for another feed. Previously, he was sleeping 7:30 p.m. to 6:30 a.m. (and oh it was heaven!). Well, the sleep deprivation has paid off!!!

Today, I took Bennett in for his monthly Synagis shot (which provides antibodies to help protect him from RSV), and he has gained 14 ounces in the last 14 days!!!!! That is nearly a whole pound! (1 lb = 16 oz). I'm THRILLED. Let's pray he keeps this up!!! He is now 8 mos, 1 week old/6 mos adjusted. He's still the size of an average three month old, but at least now we're seeing some movement on the scale!

For Nana!!

2009-01-11T11:26:00.001-08:00

Hope you are feeling better today!!!!

My mom's appendix began to leak Thursday night and had to be removed emergently. She had to stay in the hospital for a few days because of infection from the leak. She's supposed to come home today and I hope this bright smile makes her feel better!

Bennett the Pin Cushion

2009-01-03T05:24:00.000-08:00

Last Monday, I had to take Bennett into the Pediatrician's office to do some routine bloodwork and catch up on some vaccinations we have delayed (b/c he is more fragile than "normal" babies, we can't do too many at one time). We've been doing the "preemie labs" every month or two since he was discharged - testing his alk phos level (shows how well his bones are developing), calcium levels (again, for bone development), electrolytes, and hematocrit (b/c he was VERY anemic). The GREAT news is that all his bloodwork came back normal!!!! YAY! This means this was the last set of preemie labs we have to do unless something comes up that concerns us.

I can't tell you how HAPPY this makes me. Bennett's veins are very difficult to tap. For some reason, the "good" veins sit a little more deeper than is usual. So, they have to go for less desirable veins. Monday was TORTURE. It took them nearly an hour to get the minimal amount of blood they needed and they had to stick him in 4 different places just to get that! Every time they'd hit a vein, the blood would come and then stop b/c the pressure would collapse the vessel. This is VERY painful and the poor child was screaming his head off the entire time. I shed my share of tears too. So yeah, I'm beyond happy that we don't have to repeat this again any time soon if EVER.

Totally unrelated to either of my children....

2009-01-02T11:03:00.001-08:00

You guys have GOT to watch this:

http://www.youtube.com/watch?v=3p-qDTcLyLw

This is my friend Mikaela doing stand up comedy at DC Improv. She ROCKS!

Seriously guys - watch it. It will bring you a smile on this drab winter day!

Mikaela - I freaking love you!

Happy New Year!!!!

2009-01-01T14:09:00.000-08:00

Thank you all for your support and friendship through our trials and tribulations of 2008. I'm so glad that year is behind us now! I am so excited and looking forward to making 2009 an amazing year!!!!!!!!! I have a lot of goals/resolutions and optimism for this year!

Ho ho ho!!

2008-12-28T18:44:00.001-08:00

Our festivities began on Christmas Eve at my parents' house. I didn't get very many good pics, but this one is absolutely precious! Bennett was knocked out most of the time.

Carter going nuts with excitement over getting to open presents

We knew we did a good job when Carter exclaimed "Santa remembered everything I wanted!"

Bennett was a bit oblivious to it all - posing with his new 'duds.
Mom, this is for you - He loves this book!
This was Bennett's favorite gift - a teething giraffe!
Too cute
Even CUTER!
Handsome boy!
Tickled with all his new toys!
My mom got him the Playmobil Noah's Ark and he has played with it non-stop since! The thing that makes it so cool are all the detailed little pieces. You can imagine the nightmare that is with a young baby in the house, but we watch Bennett like a hawk around it. Carter woke up in the middle of the night crying saying "I dreamed Bennett swallowed my small animal pieces and choked!" MELT!! So sweet!
Bennett's Nana got him a bath ring so he can take baths with big brother - test driving
And of course, babies could care less about the gifts, they love the bows!

Christmas day we spent with Ace's family. We completely forgot our camera for that one. Nice, huh? But here is a great group pic my brother in law got of our clan
It was a wonderful Christmas!

Picture time!!

2008-12-21T08:18:00.001-08:00

Before I begin, I want to thank all of you who have been praying for Baby Kayleigh - she is making huge strides of improvement. Let us all remember to thank our merciful and loving Lord for this Christmas miracle as we continue to pray for her recovery and life!

So the final countdown to Christmas begins - and I still have so much to do! I haven't wrapped a single gift yet (only bought for the kiddies this year due to tight finances and STILL am slacking), and although I finished making my Christmas cards, I haven't addressed or signed a single one as of yet!

Here are some fun Christmas Card photo "outtakes" - now, if I can only get the actual Christmas cards OUT in the mail before Wednesday......

We had the hardest time getting a non-blurry picture of both of them smiling and looking at the camera!

Bennett - all smiles eating dinner!!!!!

Here is a cute video of Bennett "shouting" - this is how he gets our attention!

Carter decided to make himself lunch....he made a "hamburger" - 4 slices of bread and 4 slices of swiss cheese, lol. He actually ate about half of it!

Last night, we had a birthday dinner for my mother-in-law here at our house - doesn't she look fabulous!!!????

Making a gingerbread house with Tita, Lola and Charlize!

My adorable niece Charlize!

Bennett and my nephew Ethan

My father in law made a make-shift baby see saw for the boys. It was so funny!
Then we left the babies on the floor to play by themselves while we ate dessert - and this is how we found them! Ethan was caressing Bennett's head, it was SO cute!

The Bigs getting in on the action!

Thanks for looking!! I will be back end of the week with LOTS of Christmas photos! Wishing you all a very blessed holiday.

Small Updates

2008-12-18T08:50:00.000-08:00

We got a call from Bennett's pulmonologist saying that after reviewing his apnea readings, she feels confident discontinuing his apnea monitor! YAY! She also said that since he's done so well thus far, she feels comfortable discontinuing the oxygen (which will help us tremendously since the New Year brings a whole new deductible for us to build up....)! YAY! We are device free! Lets pray that Bennett stays healthy and doesn't need the oxygen again!

Also, if you've been following baby Kayleigh's blog, you'll see that the doctors have given them a glimmer of hope! It turns out she has pneumonia, so if they can treat that successfully, MAYBE just maybe her pressures in her lungs will decrease as well!! Please continue to pray for this incredible little girl - she is fighting unbelievably hard!!!

Another precious preemie needs your prayers!

2008-12-16T12:35:00.000-08:00

This family is on my preemie message board. Kayleigh was born 1 lb at 26 weeks and was never expected to survive, but she defeated all odds and did. They have had a looong and difficult journey of ups and downs. They thought Kayleigh was homeward bound, but recently she has developed pulmonary hypertension. They were told last night that there is only one treatment option left, and it could take up to a month to even start working. Kayleigh may not have a month left. I believe in miracles and the power of prayer, and this little girl needs it right now. I cannot imagine having come so far only to hit this kind of roadblock. So, please send up prayers.

http://www.kayleighannefreeman.blogspot.com/
http://www.youtube.com/watch?v=8M97YwPOM7g

Picture Tag - A blog game!

2008-12-16T11:02:00.001-08:00

I got this game from my favorite blog - www.thelifeofsuz.blogspot.com (you must check it out - its a mom about my age with QUADS who were born at 30 weeks!).

The object of the picture tag is to:
1) Choose the 4th folder where you store your pictures on your computer
2) Select the 4th picture in the folder
3) Explain the picture
4) Tag 4 people to do the same - NO CHEATING! (cropping, editing, etc!)

Here is mine!

My 24-week belly pic when I was pregnant with Bennett!!! This picture was taken two days before my water broke.

Ok blogger pals - Put this game on YOUR blog with your pic and leave me your blog address in my comments! FUN!

Developmental Review

2008-12-15T09:31:00.000-08:00

Every 1 to 2 months, a nurse from the County Infants & Toddlers program comes to do a developmental review on Bennett to make sure he is doing fine in that department.

He is 5 months adjusted age, but she evaluated him on the 4 month chart (the next one up is 6 mos). He has met all his milestones for the 4 month chart, so that is good! But he has a looong ways to go to meet the milestones for the 6 month chart! She said she will come back in February (to give us a little more time), but by then Bennett should be able to:

* Sit completely unassisted for several minutes at a time
* Use the pincer grasp to pick up cheerios
* Wave
* Make consonant sounds like "da da" or "ba ba"
* Look for toys when they fall (right now, its out of sight out of mind)
* Push up on hands when on his tummy

Lots of stuff for us to work on in the next two months!!!! I thought he was doing really well and starting to catch up to his actual age (7.5 mos), but he seems so far off from most of this stuff! Oh well, it will give us something to "do" with him during play time! If you see Bennett, make sure to wave hi and bye!

Way to go Bennett!!!

2008-12-11T09:48:00.000-08:00

I took Bennett for his monthly Synagis shot this morning and got the BEST news!! He gained 1 lbs 1 oz in the last three weeks!!!!!!!!! This is HUGE! This is his best weight gain in the last 3 months. I'm soooo happy, I can't stop smiling!

Our Nurse Prac also said that we can add in breakfast now too! Yippie!!

Lots of Pictures - 7 month birthday and visit with Santa

2008-12-07T10:44:00.001-08:00

Bennett turned 7 months old on the 5th! My time is flying! I haven't gotten an accurate weight on him in a while, but I'd guess he's between 13 and 13.5 lbs! He's been doing really well lately with eating. He goes on the 11th for his next Synagis shot, so we will find out then how he's doing. The GI wants us to call him with the weight so he can guage whether we need to discuss adding calories to his diet.

But he looks nice and healthy, doesn't he???

I love naked babies!! he he he

Here he is lying next to the "inch worm" which is supposedly 24'' long! He looks as long as the worm, but I'd be shocked if he grew nearly 1.5'' in just 2 weeks.
The wires he is playing with are the leads to his apnea monitor.

This worm is actually the first thing we ever bought for Carter!!! I am very superstitious about buying things for a baby before 12 weeks, so we bought this the day I turned 12 weeks with Carter. Second babies get all the hand-me-downs!

I love these pics of Ace and Bennett!! Can you see the love and adoration on both parts?

Here it looks like he's figuring out they both have faces, he he.
His newest "thing" is playing with his feet. Its so cute!

Here are some pictures of Carter! Here he and grandpa are showing off their twin mustaches! Carter's, however, originates from hot chocolate :)

Matching brothers! I know, how corney...

Cuddling with daddy!
A friend of mine from the NICU whose daughter was born 6 weeks after Bennett so thoughtfully arranged for Santa to come to her home to visit the preemies since they can't go to the mall and be around all the germs! Carter loooved it!

Santa's arrival - Carter was speechless!
Here he is telling Santa he wants a pet parrot for Christmas! Someone is going to be disappointed!

Opening gifts from "Santa" - Bennett loved the bow! Couldn't care less about the toy...
Some great shots

I love that they are holding hands :)

Here is our preemie group! From right to left they are Laney, Miryanna, Emma and Bennett! Bennett is the oldest, but was the most premature at 30 weeks. The others ranged from 31-33 weeks.

It was so much fun!!!!!

Emotional Recovery

2008-12-04T13:25:00.000-08:00

After Bennett was born, I joined several online message boards related to prematurity. This has been an amazing resource for me as I only know really 1 other person (my rock Linda!!!) who has been through an experience like ours. Today, someone posted about a topic I feel is not adequately addressed at all - the emtional recovery of preemie parents. I'm so glad that they did because I have often wondered if I'm the only one who feels this way, if I'm "normal," and how others deal with it.

Although post-traumatic stress disorder may be a little bit of a dramatic stretch, I do think what we preemie parents experience comes close. There are times when I think I'm "all better" and then the grief washes over me again. I know Ace doesn't necessarily feel this way, but he's an unemotional man ;) In some ways, its gotten "worse" as Bennett has gotten older. I guess while we were IN the experience, I was just in survival mode - doing what I needed to do to take care of Bennett and Carter and keep my world from falling apart - that I didn't get a chance to really FEEL the experience. These days, however, I have little "flashbacks" to those days and it really shakes me.

Last night, as I was putting Bennett back into his crib after his 11 pm feeding, I just stood there for a few minutes, holding him tight to me, and breathing him in. I didn't want to put him down. I was thinking about the time I walked into the NICU when Bennett was first on CPAP (so a little over a week old), and as I approached his pod (impeccable timing, eh?), I watched his heartrate fall and he stopped breathing, and the alarms went off blaring and his nurse leaped to his isolette grabbed the resuscitation "bag" thingie and pumped breaths into him to get him breathing again. I just froze, panicked. Usually, when they have an apnea episode, they start breathing again on their own, or with just a reminder tap. But not this time. He was fine once he was breathing again, but watching that happen is a memory that has forever seared fear and terror and renewed feelings of grief into my heart.

Another example is how emotional I get when looking back to pictures or videos of him on the ventilator. At the time, it didn't bother me. But now, I feel like my heart is being ripped out seeing my little baby like that. I am acutely aware that without this life-saving technology, he wouldn't have survived. No one ever wants to see their child like that.

So I wonder how long will I feel this way? How do I "deal" with these emotions? From listening to other mom's, it sounds like it never really does. So maybe the best I can do is learn how to acknowledge it and identify it? So that I just don't feel like I'm going out of my mind.

I found a great article called Ambiguous Loss that I think really helps to explain these feelings. We preemie parents have such a conflict of emotions - JOY pure JOY at the birth of our child and the fact that they survived. And yet, an amazing grief and sense of loss, but an unidentifiable loss. I invite you to read the article if you are interested - http://www.prematurity.org/baby/ambiguous.html

They call it the loss of a full term pregnancy, which I do think is part of it. I know to this day, I feel a certain amount of anger and grief that I lost 1/4 of my pregnancy, that I missed out on so many of the fun parts of the pregnancy, and of a "normal" birth. I still feel jealously or sadness when a friend has a normal pregnancy, birth, and healthy baby (yet, a whole new sense of joy for them as well!). But I think its more then just the pregnancy loss. Its also the trauma of watching your child go through the struggles of prematurity, of being completely separated from them for so long, of not being able to PARENT.

So the point of this? I think its important to talk about this. Its important to educate everyone of the fact that there is a huge amount of emotional suffering associated with having a child born under these circumstances. Heck, I think its important to educate the public on the crisis of prematurity in general! One in eight births in the United States is a premature baby. I do think I'm one step closer to becoming an activist! Maybe one day I can help another mom who is going through what I went through, so she doesn't feel alone. But it is important that we talk about this.

Solids and Sleep!

2008-12-03T20:40:00.000-08:00

Bennett is slowly but surely getting the hang of solid foods. He likes the yellow and orange veggies alot! He inhaled his carrots tonight. Not so much of a fan of the green veggies, but we'll work on that...I usually make all my own baby food but I'm paranoid to do that just yet since I can't seem to get it 100% pureed, so it still has a bit of texture to it. Also, time is an issue right now. But I think he will like the greens better when I make them. Lets face it - jarred baby food is a little gross. I had been giving him the veggies mixed with rice cereal, but I don't think he likes it that way, so I am now giving him the veggies alone and he seems better with that. As for the cereal, I've been mixing it with a tad of apple juice and he LOVES it! This is why I'm going to hold off for a while on introducing him to fruit - I am afraid he will get one taste of the sweetness and refuse veggies for life! This kid is opinionated...

Oh! And he LOVES those biter biscuits!! He's been teething like a mad man lately, so these must be sweet relief for him - no pun intended. He will gnaw away at it - we just have to make sure he doesn't gag himself on it!

So the bittersweet byproduct of his big boy eating is that when he eats a substantial amount, he sleeps through the night. He has been waking around 11-12 to eat, but then sleeps on until morning. Well, he DOES wake, I hear him fuss, so I get the bottle, but by the time I get there, he is conked out again. Thats wonderful you say? Not so much when 1. I still have to get up in the middle of the night to pump in order to maintain my milk supply and 2. he doesn't drink enough during the day so he NEEDS at least one bottle at night. So, I have to wake him up to eat, which kills me b/c I just hate waking a sleeping baby.....

Now the trick is to figure out a way to get him to eat at least 24 ounces during the DAY (and ideally 28-30 ounces if we ever want him to grow....) so that he can sleep through the night!

Thankful

2008-11-28T19:29:00.000-08:00

Happy Thanksgiving everyone!! Sorry I'm a day late. We were so exhausted from our marathon turkey day that we CRASHED when we got home last night.

So Thanksgiving is that day when you reflect back on the last year and all you have to be thankful for. I think I would have to say that this past year is probably the hardest year of my entire life thus far. Yet, the most blessed. I think mothers of preemies already have an overwhelming sense of gratitude for their little ones. But I think our situation highlights that feeling even more. Not only am I thankful that Bennett has survived his premature birth, and despite many struggles, has overcome and is well on his way to living a happy, healthy, normal life. But I'm also overcome with thankfulness that despite the fact that my amniotic fluid started leaking at 21 weeks, I didn't rupture until 24 weeks, and that he wasn't born at the cusp of viability, but went on to cook another 6 weeks post-rupture. Six weeks is a relatively short time period. But in the life of my child, it probably meant his life. In my gut I feel that if he had been born at 24 weeks, Bennett probably would not have survived given the immense difficulty he had with breathing at 30 weeks. That is a frightening thought, as I cannot imagine my life without him now. So, the "meaning" of this Thanksgiving runs particularly deep.

Additionally, this experience has really put into focus for me what an amazing support network of family and friends we have. I want you all to know how thankful I'm for you! When I was on bed rest in the hospital, I commented to Ace that if I ever felt unloved or unsupported, to please harken me back to this time. My room was perpetually filled with flowers, cards, and treats. My phone rang several times daily with someone calling to see how I was holding up. So many of you came to visit me and keep me company. My message board friends sent me a kick-butt care package. Several of the preschool moms and teachers sent over a huge basket full of snacks and books. My family brought me food on practically a daily basis so I didn't have to keep eating the icky hospital food all the time. But beyond all that - the tremendous outpouring of prayer. Thank you, thank you, thank you!

Ok, now I'm done being sappy...on to the pics!

Bennett had his first taste of sweet potatoes yesterday and he loved it!!

Baby food is ok, but what he really wants is "big people" food. He loves to teeth on pieces of pear or apple, and to gnaw on bread. He grabs for your food if he can get near enough! Yesterday my sister was letting him sip some sparkling red grape juice off her finger and he flipped. Its like baby crack. If she took too long getting him his next sip, he started shouting at her (I really need to get a video clip of his shouting, its freaking hilarious!).

And boy is he teething big time right now....Grandma's finger is an awesome teether :)
Bennett also got to hang out with his cousin Ethan last night. Ethan is such a cutie - he kept reaching out to touch Bennett's face and hands!! I hope they grow up great friends! Bennett is 2.5 weeks older than Ethan. Ethan has about 4 lbs and 4 inches on Bennett though, lol. Poor Bennett...

And here is the long-awaited rolling sequence!!!

And this isn't the best pic, but I had to share. The other night after bath, his hair was sticking straight up on his head like a spikey 'do. To match daddy I suppose? I thought it was too funny :)
Oh, and we finally got the compulsory baby-in-the-laundry-basket picture!!!

And I want to share this pic too - Carter likes to be rocked to sleep sometimes too, so here I am doing double duty. I just shout for Ace when both are asleep! he he. Can you tell how much I love these boys??
Thanks for following! Happy Thanksgiving everyone!!

Prayers Needed for a Friend!!

2008-11-26T13:38:00.000-08:00

Ok prayer warriors - time to gear up! My friend Kelly is about 22 weeks pregnant with her first baby, a little boy. She started having preterm labor this week. She is now home on bedrest with terbutaline (a medicine to stop contractions), and probably will stay there the rest of her pregnancy. Please pray for my dear friend that the contractions stop and the "rest" of her pregnancy is another 15 weeks!!!

I met Kelly through a friend from law school - we were both bridesmaids in the mutual friend's wedding last January. I instantly felt a connection with her and have been praying for her through her journey to conceive this precious baby. She was such a bright spirit and support for me during my bedrest and NICU journey. Now she needs all the prayers she can get. I believe without a doubt that the tremendous outpouring of prayer for Bennett and I got us to where we are today. Please pray for Kelly and her baby boy "Patches."

Bennett's Visit to the Gastroenterologist

2008-11-26T08:09:00.000-08:00

Yesterday, I took Bennett to see a GI doctor up in Baltimore regarding his feeding and reflux issues. It was a very reassuring appointment!

First, with regard to the reflux, the doctor believes that Bennett is getting better, not worse. Think of it as a mountain with a sharp peak at around 4-5 mos of age and then a steep decline. He believes that the hunger strikes Bennett went on the past month were evidence of the "peak" and the fact that he has been much better recently signifies that he is on the downward fall. He said that 65% of all babies have some reflux, but only 2% of them have it at 12 mos of age. So, we should expect to see things getting better from here on out!

I asked about the possibility of acid damage caused by the severity of his reflux previously, such as an ulcer or esophogitis. He said that he could scope Bennett to see if there is damage if it would make me feel better, but he really doesn't believe that he will find anything. Babies will damage like that are incredibly fussy and inconsolable. That is NOT Bennett :) He's such a happy baby absent feeding. So, we're going to put that issue on the bottom shelf and revisit it if things get bad again. But for now, the assumption is that the reflux is quickly on its way to resolving itself.

What he does believe is causing the persistent feeding issues (albeit MUCH better than before) is a combination of Bennett's "opinionated" personality and a minor oral aversion that he acquired during the peak of the reflux. While we can't do much to change his personality (nor would we want to!), we can give him time to see if the oral aversion dissipates. If not, then January we will take him to a feeding clinic that specializes in this sort of thing. In the meantime, we should avoid creating any negativity around feeding. He said let him eat for about 20-30 mins, but don't push it beyond that.

Now, with regard to the growth issues, he said although Bennett is incredibly tiny (the size of a 3 month old), his height to weight ratio is excellent. That means that he is very healthy, as the first thing you see decline in a baby that is nutritively lacking is a decline in their height to weight ratio. He is on the lower end of "normal" for caloric intake, so if his weight gain continues to be an issue we may consider adding back in some fortifier to make the milk around 24 calories per ounce. The normal range is 80-120 calories per kilo, and Bennett gets exactly 80 calories per kilo if he eats his usual 24 ounces per day.

So, why is he growing so slowly? We still don't know. But the doctor believes that the most likely cause is simply prematurity. The "norms" for what is expected for preemies in terms of growth are skewed by the fact that the vast majority of preemies are much larger at birth (78% of all preemies are born over 34 weeks - yay!!). But they typically think of preemies who are born under 1500 g (like Bennett) entirely different. These babies tend to have many more medical issues and tend to grow much more slowly. But the good news is, most of them, absent persistent medical issues, DO catch up by 2 years of age. Hardly any <1500 g babies catch up by 1 year of age. So the problem here is more our expectations than anything "wrong" with Bennett. I asked him about the drastic drop in his status on the growth chart, and he said that was caused by a drop in the calorie per kilo intake that occurred as Bennett grew older, but didn't increase milk intake. He said that if Bennett had been on regular breast milk from birth with no foritification, we probably would have seen this very slow growth patter from the start. But this is clearly something that is really out of our control. If he "falls" more on the growth chart, we will take him to an endocrinologist to test for metabolic disorders, but he doesn't think that will be the case.

I am actually very comforted by all of this. I'm finally getting explanations that make SENSE, and feel confident this doc knows what he is talking about. It makes me VERY happy to hear that Bennett isn't suffering in any way. It seems that the slow growth is more of "my" issue than his, and I have to try to let that go.

Yet another reason why c-sections suck!!

2008-11-21T20:31:00.000-08:00

Yes, c-sections SUCK. Forget the fact that it probably saved both my children's lives - you don't have to be logical in the blog-world, do you??

I saw my OB today about persistent sharp pain I feel in my c-section area 6.5 mos post partum. Turns out I have knots forming where they stitched my fascia up on one side, and maybe caught a part of the muscle. Lovely. I have to deal with it for at least another year, and if it doesn't resolve on its own, I get to undergo a fun outpatient procedure to fix it.

This is why I wanted to have all-natural births. C-sections SUCK.

How Preemie Moms are Chosen

2008-11-21T18:35:00.000-08:00

By Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--
and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

This makes me smile and cry every time I read it. In a sense, its an honor that God saw me fit to take on this immense challenge. And as difficult as it as been, I can't help but feel that I am somehow blessed in all of this. The author is so right - what was another fun milestone to achieve with Carter feels like a miraculous feat with Bennett. I just appreciate all the little things even more. You all will never know how completely amazing it was to get to hold my son for the first time, even though he was over a week old already. How incredibly special it was to put that very first outfit on him when he had been naked for the first 3 weeks or so of life. How the whole world stopped for a moment when that little boy smiled for the first time. Having a preemie who has struggled so much has only made me love being a mother all the more!

The "official" 6 Month Appointment and another FIRST!!

2008-11-18T19:14:00.000-08:00

We had Bennett's "official" 6 month appointment today. Yes, I realize he is now 6.5 months old, but we delayed it because he was due for his Synagis shot on the 11th and his Ped. doesn't like to immunize and do Synagis too close together.

There was really nothing too exciting or surprising about the appointment today. Bennett weighed 12 lbs 7 ounces, which is a 3 ounce gain from last week. They measured his length at 23 3/4 inches, but when I told her the Pulm's office just measured him at 22 5/8 last Thursday using their special measuring table, she said that would definitely be more reliable than her method of drawing lines on the exam table paper. He is not on the growth chart (adjusted or actual) for either height or weight. His head circumference was 42 cm, putting him in the 10th percentile for 6 mos! At least ONE measurement is somewhat close to "normal"!!! The Pediatrician agreed with me that at this point his weight and height are not even within the usual and normal parameters even for a small baby. But she had no answers for me as to what could be causing it. She said yes, it is worrisome, BUT he looks like he is thriving and he's meeting all the developmental milestones for a 4 month old (his adjusted age) and in many ways is acting like a 6 month old! So, she said not to freak out and panic and be consumed with worry.

We're taking Bennett next Tuesday to see a gastroenterologist, and his Ped. and I are both really hanging all our hopes on this dude. He is a well known GI, and has a nutritionist on staff that will be able to help us with the growth issues. Something is terribly wrong, and no one knows what. My Ped. said she's never seen a baby be SO resistant to the treatment methods we have tried. This past Friday he's started putting up a fight eating again. He seems like he is in a lot of pain. :( Tuesday can't come fast enough!

BUT....she did tell me to go ahead and start giving him rice cereal. She said that at least has some calories, and we can use high calorie formula to richen it up even more. Bennett has been showing a lot of readiness signs for solids - particularly watching us like a hawk when we're eating, and reaching and trying to grab our food when eating. She said the danger in ignoring these signs is we may miss the window of opportunity and end up with yet MORE feeding issues. She said the recommendation is that he is taking cereal, fruit and veggies by 9 mos. But for now we're just doing the cereal b/c the fruit and veggies are very low in calories, and we don't need to be filling up his tummy with few calories.

So, we gave him his first cereal tonight! He did AWESOME. He acted like an old pro eating, and ate almost the entire bowl I made! I didn't even have to make it all that watery! He really seemed to enjoy it too!!

"Oh please mommy, please feed me some of that mushy stuff!!!"

Open up, here it comes!!

"Hm, this isn't too bad!"

"In fact, its delicious!!" "Gimme more mommy!!!"

Ahhhhhh - happy full tummy!!!

YAY Bennett!!!!

Rolly Poly Bennett!!

2008-11-15T19:03:00.000-08:00

Today Bennett decided he would master the fine art of rolling both from his back to his tummy and from his tummy to his back!! YAY BENNETT!!!!

This comes as he is just 4 months adjusted age, beating out his big brother by several weeks on reaching this milestone!

Yay for Bennett's lungs!!

2008-11-13T08:41:00.000-08:00

Bennett saw his Pulmonologist this morning! We reviewed his sleep study report, which showed moderate sleep apnea secondary to reflux. He had only one episode the entire test where his oxygen levels fell below 90%. She said that his right lower lung is still has some crackling sounds, but based on everything together, she believes that it is not systemic lung disease but rather aspiration from reflux. So....we're discontinuing the oxygen completely AND the lung meds!!!! We'll keep the oxygen on hand for illness this winter. We're going to continue using the apnea monitor for another month at night and try thickening his night bottles with cereal to make it less likely he will aspirate the refluxed milk.

She also recommended we introduce solids to him now. She said that his weight to height ratio is good, but that is because he is REALLY short, lol. He is only 22 5/8''!! She thinks that is why he isn't gaining weight, b/c if he were to do so, he'd be fat, and his body doesn't want him to be fat. Interesting huh? She has no clue why he's so damn short, but said there really isn't anything we can do about it, so why worry. But she said as long as he is eating well and meeting developmental milestones, she is happy.

So, the reflux continues to suck, but everything else is GREAT!!!!

Remember Piglet?

2008-11-11T19:24:00.000-08:00

In an attempt to make myself feel better, I thought we could use a little perspective.

Remember the little piglet that Carter bought for Bennett right after he was born???

Remember how he was nearly as big as Bennett???

Here are Piglet and Bennett on July 4th about a week before B-boy came home:

This is on July 14th, right around when Bennett reached his due date!! He'd been home 5 days:

And this was Saturday!!

Now he dwarfs Piglet!! Our boy really has come very far!! What a precious boy :)

And one final pic just because I think its cute - bath time!!!

Thanks for listening to me whine!!

Whoop de doo

2008-11-11T09:07:00.000-08:00

Bennett gained 2 WHOPPING ounces in the last week (**insert sarcasm**). I'm really disappointed, as I thought we'd be seeing at least a 1/2 lb gain this week. Bennett has been doing SO much better with eating - downing about 25 ounces a day!!!! That is tremendously better than the 15 ounces a day he was doing. I really thought we'd see some good weight gain. He was 12 lbs 4 oz today (Ace told me the wrong weight from the last appt last Tues, he was 12 lbs 2 oz then). Its great he's eating more for so many reasons, but geez kid! At this rate, he'll only gain 1/2 a pound a MONTH!! The Ped. said lets give it some time and see how he does.

We go to the Pulmonologist on Thursday.

Happy 1/2 Birthday to Bennett!!!!

2008-11-05T19:54:00.000-08:00

Can you Belieeeeeeeve it??? Wow, these past 6 months have gone by so quickly and slowly at the same time!

Yesterday at the Pediatrician, Bennett weighed 12 lbs 4 ounces. He won't have his "official" 6 month appointment for another two weeks, so I won't have the percentiles until then. But yesterday we discussed our feeding concerns with the Pediatrician. She agreed with us that Bennett NEEDS to see a GI specialist now. And she told us to try giving him just straight breastmilk - no fortifier! She thinks maybe he's getting too many calories in a dense amount that he doesn't develop a good hunger instinct. Or perhaps he dislikes the taste. OR, it is very likely that the fortified milk is simply too thick that it takes too much energy for him to drink it. And babies with BPD expend more energy eating anyway. Well, in the first 24 hours of this experiment, Bennett has done VERY well :) But none of our "solutions" work for more than a few weeks anyway, so I'm not going to get too excited.

Here is the birthday boy!!!!!
Thanks for following!!!!

Doing the Preemie Dance Again

2008-11-03T20:20:00.000-08:00

You know how it goes....two steps forward, one step back....

So things HAD gotten better with the Prevacid, a whole lot better. And then all of a sudden, they've gotten a WHOLE lot worse. Bennett flat out refuses to eat these days. He pierces his lips together and won't open them, and thrashes his head side to side. We literally have to force feed him :( Its not pretty people... There are many tears shed by both parties in this endeavor. The only time he will voluntarily eat is if he's fallen into light sleep. Of course, he eventually falls into deep sleep and stops eating, which means he never takes in enough.

The culprit? Your guess is as good as mine. Prevacid isn't like the other drugs - they don't develop resistance to it. But, if the medicine has been mixed long enough, it can lose effectiveness. I ordered another refill and will pick it up tomorrow. If he's all of a sudden better again, we've found the problem.

But then there is this other small matter called teething. Reflux + Teething = HELL. I kid you not.... Bennett has a small part of his very first tooth popping through his gums and is drooling up a storm and chewing on his hands constantly.

If its not one thing, its another with the kid, huh? But darn he's cute!

And he's getting so big! Look at how he fills up his Moses basket!! AND he's wearing a size 3-6 month outfit here!!!

And he's a smartie pants too - look he's already reading Fortune with daddy and training to become the next CEO/President of Custodio Asset Management!! (we were hanging our hopes on Carter, but he's professed a desire to either become a planter or a zoo keeper when he grows up).

Yep, he's a fiesty one too! The proof:

I just love this picture - it cracks me up!!!

My Little Spooks!

2008-11-01T07:12:00.000-07:00

So the great news is that my case settled right in the middle of trial, so I foresee a much more "normal" pace of life! I took yesterday off to spend with my boys, and we had a great day!

Carter decided he wanted to be a "planter" for Halloween.

I got a cute little Halloween outfit for Bennett but of course, he pooped straight through it right after I put it on him, lol!

Can you see the love???

Here is Carter at his school's Halloween parade!!!
Posing before going out trick or treating
And because Carter was a planter, we had to make Bennett a plant!!!

A rare family shot!

We have entirely too much candy in the house now. And Carter is a total candy fiend. I'm tempted to just let him gorge on it and get it done with fast, lol. Maybe I can sneak handfuls out of his basket each night to get it gone fast?

Bennett's New Tricks!

2008-10-24T21:13:00.000-07:00

Alright fellow mommies - tell me if this isn't true: As soon as you express concern about something your child is or is not doing, particularly to a health care provider, they prove you wrong and make you out to be a liar?!?!

So, we're on day 3 of the Prevacid, and things have been going REALLY well!! He's eaten 18 ounces each of the last three days!!!! AND....he's learned some new tricks this week!! (I'm presuming because he now has the energy??):

Tonight, I discovered that he can sit unassisted for a few seconds at a time!!! He lasts longer with the boppy though.

And...Bennett gave his daddy the best gift ever by LAUGHING for him for the first time!!! I got a short little video clip.

Now if that doesn't paste a huge grin across your face, you have a heart of stone!!!!

He is also this * * close to rolling from his back to his belly!!! He just needs to learn how to get his leg a little higher and he'll be golden!! (No pics of this yet). I put him on his play mat and he rolls side to side and gets all around the mat that way! SO cute :)

This is nothing new, I just loved his expression here!

BUSTED!! Carter has become our resident photographer. Although his favorite subject is FEET (so not kidding about that...), he does get other interesting and sometimes damning photos:

The Foot-fetish Photographer busy playing!

So there are some positive things to celebrate this week. I still think Bennett needs a higher dosage on his Prevacid, as he's majorly refluxy by the night. But thats an issue for another day.

And while I usually don't post stuff about *me* on here, I'd like to take this opportunity to ask for some good thoughts/prayers/vibes this week. My practice group at work has a two-week long trial starting on Monday. While I'm not actually one of the lawyers trying the case (my butt is stuck at the office "manning the ship" so to speak), trials like this take an extraordinary amount of time, work and effort. Yesterday was the first time in over a week I'd gotten home before 7:30 p.m. I'll be working all weekend, and I doubt the next two weeks will be any easier. As you can imagine, this puts a huge strain on our family, especially with Bennett's needs and demands. Momma is lucky to get more than 3 hours of sleep lately! So, I'm going to need all the help I can to get through this trial. Oh, and pray for a verdict for my client too ;)

Thank you!!!

On to Plan...E?

2008-10-21T19:09:00.001-07:00

I think its E - we've tried so many things! We switched to fortifying the milk with Gentlease this weekend. Bennett definitely seems to like the taste of it better. It smells better! lol. But, unfortunately, it doesn't entice him to actually EAT more!!! His reflux seems to be getting worse by the day. So our Pediatrician prescribed Prevacid for him. Its supposed to prevent the stomach from making acid to begin with. There is some dispute among the "experts" about the proper dosing, so if it doesn't work, we will revisit that issue. I'm praying SO hard this works. We're really running out of ideas here.

Bennett also had a visit by his Developmental Nurse yesterday. He is actually doing better than I thought! He's spot on neurologically and physically, but he is "weak" despite the fact that he can do the things we want him to do. So we need to work on strengthening. His nurse is also very disconcerted about the weight issue. They want to see their preemies gain 2 lbs between every monthly visit and Bennett has only gained a bit over 1 lb since his last appointment two months ago. So she is scheduling him an evaluation with an Occupational Therapist to see if maybe his feeding mechanics need help or if he has a mouth sensitivity. Our Ped. said its very unlikely she'll "find" anything this young, but we are covering our bases and trying what we can!

God Spoke to Me this Morning

2008-10-19T07:11:00.000-07:00

I will be honest with you all. I have had a VERY very very difficult time emotionally dealing with all we've been through with my pregnancy and Bennett's birth. I have experienced such a dichotomy of thinking. On the one hand, so incredibly thankful that I was able to continue carrying Bennett until 30 weeks, and that he didn't suffer some of the more severe consequences of prematurity like severe brain bleeds, cerebral palsy, blindess, permanent heart defects, etc. And then on the other hand, I feel so angry that this happened to my baby. I constantly ask God "why??" Particularly as we continue to struggle. I often feel like its unfair that Bennett has had more difficulty than the average 30-weeker. Yep, I'm the queen of the pity party :)

Well, God sent me a revelation this morning through the message of a T.V. evangelist, of all people! I had the news on while I was putzing around the house, and at some point, the news went off and a T.V. preacher came on. For some reason, I didn't turn the channel. I heard him saying "You are not too short..." - which caught my attention for some reason - I guess because I'm only 5'2''? Well, the message of his sermon was that what you/I perceive to be a disability, a bad hand, is actually an opportunity for God to show the world his goodness.

And then it clicked for me. It is so that God's mercy and goodness and love can be on display that Bennett was born premature. It is by the grace of God that Bennett made it to 30 weeks and survived. It is only because of God's goodness that he wasn't born at the cusp of viability at 24 weeks, and didn't suffer so many of the serious conditions that babies born that early often have. I guess I'm finally seeing what others see. That sure, he hasn't had an easy course, but look at what a miracle he is! He isn't even 6 months old yet, and despite suffering chronic lung disease, he is breathing all on his own! That despite having feeding and growing struggles, he is now nearly 12 lbs when at one point he was only 2.5 lbs! God IS healing him, and he is using Bennett to show us how great He is.

Now, you all may be thinking - wow, you just NOW realized this?? Well, sure I knew all of this intellectually, but for some reason, the anger and hurt in my heart prevailed. Something just clicked for me this morning. So, now, instead of feeling pity for myself and Bennett, for feeling angry and sad, I'm going to try to focus on how this is all just another example of God's greatness. And thank God for using us to show that to the world. And hopefully, some will be inspired and see this as well. Then it won't all be for naught.

Feeding Issues Persist

2008-10-17T10:34:00.000-07:00

What? Me? A troublemaker?? Never....

It is still a daily struggle to even get in the minimum 15 ounces of milk that Bennett requires. We've only hit the "golden" 20 ounces twice. It is very frustrating for everyone involved. And concerning too, because we are always worried about dehydration and malnourishment. I have a feeling that he is falling behind developmentally as well, but we will find out Monday morning when he has his developmental review. He smiles and "talks" but he doesn't laugh or shriek or hold toys, or even attempt to roll. Babies do things on different time frames, but its another "sign" to be concerned.

To illustrate how much his growth has slowed, at his four month appointment, he was 50th percentile for adjusted age. He is now under the 5th percentile for his adjusted age. He may "seem" big to us, because we've seen him as small as 2.5 lbs, but when you put him next to a 3 month old, he is strikingly smaller. I can't deny that this upsets me greatly. What mother doesn't want to see their child healthy and thriving?

So, his Pediatrician is having us switch from using the preemie formula to fortify his milk to using regular formula (Enfamil Gentlease), in the hopes that if it tastes better and is more gentle on the stomach, he'll voluntarily eat more. The drawback is that the preemie formula is much higher in protein, fat, calcium, carbs...just about everything. Hopefully, he will increase his volume enough that it won't matter.

If that doesn't help, Monday we're going to put him on Prevacid for his reflux. They don't normally prescribe that for babies that are this small, but its definitely stronger than the Pepcid. And if that doesn't work....then it may be time to really start thinking about the gastric feeding tube.

So if you can, please send out some "healthy appetite" vibes to Bennett!

Synagis Shots - One Down, Five to Go!

2008-10-10T10:08:00.000-07:00

Bennett received his first of six Synagis shots this morning! Synagis is a special shot that delivers antibodies that are designed to help fight off a viral disease known as RSV. RSV is a highly contagious virus that resembles a severe respiratory infection. Most children will contract RSV by the age of 2. To a preemie, especially a preemie with chronic lung disease/BPD like Bennett, RSV can be deadly. Up to 400 babies die from RSV in the U.S. every year!!! RSV can lead to other very dangerous illnesses as well, such as pneumonia and bronchiolitis. RSV also puts a child at risk for developing asthma and ear infections, even long after its symptoms have passed.

Because preemies born under 35 weeks have very underdeveloped lungs, they are at a much higher risk of suffering the most severe forms and affects of RSV. Fortunately, in the U.S. most preemies born at or under 32 weeks who are less than 6 months old during RSV season (October to March), or who have chronic lung disease/BPD, qualify to receive the Synagis shots. The shots are VERY expensive - $1700 a piece, and you have to get it each of the 6 months that span RSV season! Thankfully, our insurance pays all but $6.60 of each shot. Studies have shown that the shots reduce the incidence and severity of RSV by up to 60%!!! I thank God for modern medicine!

Let's pray this is the start of a very healthy fall and winter for Bennett!!!!

On a side note, he weighed in at 11 lbs 4 ounces today. He was just shy of 11 lbs two weeks ago at his pulmonology appointment (you aren't supposed to compare weights taken on different scales, but its hard not too...), so that is only a 5 ounce gain in two weeks :( He was 10 lbs 5 oz one month ago when he visited his Ped. last and was weighed on the same scale, so he's gained about 1 lb in the last month. Not bad - that's 1/2 ounce gain a day. I hope the scales between the two offices are really off from each other though and this isn't evidence of his growth rate slowing down even more! Its still a struggle to get more than 15 ounces in him a day. On the weekends, I am able to get 18 to 21 ounces in him happily, but for some reason he just won't perform for daddy and Lolo, who watch him during the day while I am at work :( Very frustrating!! Anyone have any advice???

Beautiful Eyes

2008-10-07T11:26:00.001-07:00

Bennett's best attribute is clearly those deep soulful eyes, and they are developing just fine! He is a little farsighted, but within normal limits for his age. His retinas (often damaged in premature infants) are perfect and there do not appear to be any tracking issues (like being cross eyed or having a lazy eye), which is another area of risk for him. He will go back every 6 months to continue to make sure his eyes are developing correctly.

I apologize I didn't post last night about this. I have a huge trial starting in exactly 20 days, and to say my life is "crazy" right now is an understatement....

Happy 5 Months birthday to B-boy!

2008-10-05T18:42:00.001-07:00

Today is Bennett's 5 month birthday!! So, in honor, I must share some pictures!

This pic is actually a few weeks old, but I adore it so I have to share.

I love this pic of the boys before Ethan's baptism last week.

Bennett tried out his exersaucer. I had to stuff the back with towels and his feet barely touched the bottom, but he loved it!

His official 5 month photo!

Bennett seems to have adjusted now to his new reflux meds. Thankfully, b/c the first half of the last week was NOT fun! He's starting to take more in his bottle too! I've gotten 3 ounces down him each of the feedings I've done this weekend. This last feeding was over 4 ounces! I hope he keeps it up!

He has an appointment with the opthamalogist tomorrow to make sure his eyes are developing correctly.

Another Baptism!

2008-09-29T08:43:00.000-07:00

On Sunday, our nephew Ethan was baptised and we celebrated our niece Charlize's 7th birthday!!!

This is how Bennett spent the entire ceremony (thankfully!!)

Here is Carter making Ethan laugh and squeal!
Carter cheesing it up!

The beautiful family!

Cousins with their Godfathers (ninongs)
Cousins with their Godmothers (ninangs)
Our whole family!

Bennett's funny face!

With his Uncle Arne

The birthday girl!! Can you BELIEVE she is 7 already?!?!

Pulmonology appointment this morning

2008-09-25T19:29:00.001-07:00

So now that you have your picture fix, time for some serious info.

This morning, I took him to the Pulmonologist. We got some mixed reviews. Overall, he is doing really well. He maintains his oxygen levels well. Its likely that he will be able to come off the oxygen at night too. She said that if there are no apnea episodes on his sleep study report, then we can ditch the apnea monitor too!

Unfortunately, he is not growing at a normal rate. Healthy babies are expected to gain 1/2 to 1 ounce per day at his age. He is just under 1/2 ounce a day per average. Thats troubling considering he is on heavily fortified feedings - the highest calorie they will go! He should be gaining at least on the upper end. We were hoping to wean down the fortifier, but thats not going to happen anytime soon. Its rare that a baby his age is still at 30 calorie feeds. They are ususally down to 22 or 24 by now :( We can't be sure what is causing it, but it is clear he isn't eating enough. He should be eating 20 ounces a day, and I'm lucky to get 15 down him! I just can't get him to eat anymore! Its very very frustrating. So, she Rx'd him a new medicine for his reflux, so hopefully that will help? I'm praying so. She said he's doing ok now, but if he doesn't pick up his growth rate in the next couple of months, she may recommend placing a feeding tube through his abdomen into his stomach. This is unphathomable to me and I seriously doubt I would consent to it. But it bothers me that she even suggested this could be a possibility. He was just under 11 lbs today, and 22 inches. Tiny little puney boy! He's 20.5 weeks, 11 adjusted age tomorrow.

Bennett's Baptism!

2008-09-24T21:53:00.000-07:00

As promised, here are the pics from the baptism!

Some pre-ceremony fun:

My mom made his Christening gown from my wedding dress (as she did for Carter as well) - I think it turned out gorgeous!

Melissa had him cheesing up a storm!

The ceremony:

With the Ninongs (Godparents in Tagolog) - Ace's brother Arian

This is how he spent the first hour of his party!

With his Ninong

With his Ninang

Trying out the Bumbo for the first time

Chicas!

Walking already! lol

The cake was delish!! The party was hosted by Melissa, Niezle, Suzy, and my mother in law and mom. The theme was "Falling in Love with Bennett" with a play on the word Fall for the decor.

With grandma
Melissa and Kenny. Mel is Carter's Godmother. She is currently 15 weeks pregnant with Bennett's future best friend Elijah!

Big brother playing in the ice bins, lol!

Thanks for looking!!!

Sleep Study Update

2008-09-24T08:02:00.000-07:00

Before I go into the details about the sleep study, let me just say I have not forgotten about my promise to post a huge picture post with baptism pictures! It was a lovely ceremony and a fun party (if you were there and disagree, don't tell me ;). I simply have not had a free second, LITERALLY, since Sunday to even think about posting. I blame crazy work deadlines and my children for this.

Last night I took Bennett to Children's National Medical Center for an overnight sleep study to see how well he maintained his oxygen saturation during overnight sleep. Oftentimes, a child will be fine during the day maintaining oxygen, but during the deeper sleep cycles of overnight sleep, they begin to desaturate. So, this study is a prerequisite to him being able to come off the oxygen during sleep.

We had to be there by 7 p.m., which meant I had to leave work early, make a mad dash home to pack up the insane amount of stuff an infant his age needs for a simple overnight stay, love on Carter for a few minutes, and get me and Bennett on the road by 6 p.m. to navigate my way through D.C. and get there on time. Chaos is the only word to describe that process. Then, of course Bennett soiled his diaper on the way there, and proceeded to scream his head off nearly the entire drive. It didn't help that there are so many stops and starts driving through D.C. so he wasn't lulled to sleep by the car.

We check in to the sleep lab, I change him and he is all happy and smiley again. Then the mean tech comes in and proceeds to hook up over 30 different electrode wires all over his face, head, and body. He was NOT a happy camper!! And they put this nasal cannula on him that measures the depth of the breaths he took in, and it could also be used to deliver oxygen to him if he began to desaturate. But the prongs on it were a little thicker and longer than the ones we used and it really bothered Bennett. He kept pulling it out and wriggling his head back and forth. But its a SLEEP study, so I had to get him to sleep. Finally, at about 10:30 p.m., he is sleeping deeply enough for me to put him down so I could finally eat my dinner. I "slept" in the bed with him and did my best to keep him asleep even though he was very agitated and was stirring the whole night. I have a bad cramp in my neck today from the way I had to position myself, lol. I slept maybe 30 minutes total the whole night. But this isn't about ME.

When they came in at 6 a.m. to wake us up, they said Bennett did very well!! They wouldn't give me details about what that meant though. However, at the beginning of the night, he said that if Bennett desaturated below 93% for more than 2 minutes, or below 89% at all, he would come in and hook him up to the oxygen. Well, he never did come in to hook him up, so I am guessing that means he stayed above those parameters! YAY BENNETT!!!!

We see the pulmonologist very early (yawn) tomorrow morning. I doubt she'll have the report yet, as it takes a long time to read all those various electrodes and make sense of it all. But I take this as a positive sign that we will be getting rid of the oxygen very very soon!!! I know Bennett will be very happy - he hates it!

Sorry these pics are so dark, they are much better on my phone. You can see all the wires coming out of the top of his head here.

And you can see all the stuff on his face here. His little eyes were swollen from crying! Poor baby!

Our first professional family photos!!

2008-09-17T20:30:00.000-07:00

On August 27th we had a photographer come to the house for our first family photos! The proofs are now online and will be for the next two weeks.

They came out SOOOOO SOOOOO GOOD!!!!!

www.lauralarosaphotography.com

Go to "Clients" and enter "custodio" as the password!

Trust me, its worth the effort - the boys are absolutely PRECIOUS!

And gear up for a HUGE post come Sunday for Bennett's BAPTISM!!!!

Oh and in other news, Bennett's sleep study is scheduled for 9/23 overnight. Then we see the pulmonologist on 9/25! We are praying he is ready to lose the o2!

Bennett's 4 month check up

2008-09-11T16:51:00.000-07:00

Bennett turned four months old on the 5th! As of tomorrow, he is 9 weeks adjusted age.

I took him to the pediatrician yesterday for his 4 month check up. He weighed in at 10 lbs 5.5 ounces and 22'' long! He's gained over 4 lbs and 4 inches since he came home!!! He moved up on the preemie growth chart from the 25th percentile to the 50th percentile! He is now "proportionate" in his weight and length. This is his last plot on the preemie growth chart though. At 6 months, they will start plotting him on the regular growth chart full term babies go by, so he'll have to start his ascent anew!

I was a little concerned because he's only gained 6 ounces in the past 2 weeks (since his pulmonology appointment), so we're going to monitor that. His doc said he may be burning more calories breathing without the oxygen. Or, it could be the reflux (which I think it is because I've noticed him refluxing more and exhibiting signs of pain) - he doesn't eat much. The "rule of thumb" is that a baby should eat 2.5 ounces per every pound they weigh every day. So he should be eating 25 ounces a day and never comes near that. I'm lucky to be able to get 20 down him. But still, you'd think with the fortifier he would be gaining at least the 1/2 to 1 ounce a day that is "normal" for babies. Anyway, we'll keep an eye on it. Its not too worrisome, since his overall rate of growth is excellent.

Developmentally, he's hitting all the markers for a 3 month old except he doesn't make a high-pitched shrieking sound. His developmental nurse said that often babies on oxygen don't do this for a long time. Considering he is only 9 weeks adjusted age, thats pretty good!!! He is smiling more and more these days - it melts me every time!!! Sure, a baby's smile will warm any mother's heart, but its even more special when you wait soooo long to see it. Today when I got home, I walked up to him and started talking to him and he lit up! He gave me the biggest cheesiest grin I'd ever seen from him!!! He is also "talking" quite a bit these days making all kinds of baby noises. SO precious! I think he is also close to rolling over because he rolls side to side on his activity mat. Today he figured out he could kick the rattle and was kicking it over and over. I just love how much of a baby he is blossoming into!!

He got a bunch of vaccinations too. Of course, he screamed like a drama queen when he got the shots, but conked right out afterward. I gave him some prophylactic tylenol so he wouldn't get a high fever like he did last time he got shots, and it worked!!!

So that is it for now. My boy never ceases to amaze me in how strong his is. I take him back to see his pulmonologist on the 25th. We still need to get the sleep study done to see if we can discontinue the oxygen completely. And we'll get the apnea monitor readings to see if his reflux is causing him more problems than are apparent.

Here are some fun pics!!

This is the only way Bennett will nap longer than 30 mins....

This is the closest I have gotten to capturing his smile. This was the start of a smile. When he smiles, his whole face lights up!

At the State Fair

I think this is the most hilarious picture EVER!!!! This pretty accurately depicts my life right now, he he. Exhausted with two kids clinging to me!

My babies giving me love

A family, self-portrait, he he he

Mommy and Bennett before I went to the Celine Dion concert!

Carter is really into organizing things, lining things up, and "building" things lately

Thanks for looking!!!

I went back to work today

2008-09-02T16:16:00.000-07:00

Yep, my 24 week maternity leave came to a close and I returned to the office full time today. It wasn't as bad as I thought it would be. I got a little emotional saying bye to Bennett this morning, but I kept it together knowing he was in good hands. Ace and his dad are sharing Bennett during the day. I only called once to check on him, and he was doing fine. My father-in-law did comment how he was a very light sleeper and only wanted to sleep on him :) Hopefully, he'll adjust soon. He ate well and didn't cause any trouble.

I enjoy being back in the office, being around grown ups and using my brain. The day really sped by! Hopefully, now we can get back into a routine and things will feel more organized.

Carter had his first day of school today too! He has new teachers and a new classroom, but many of his same friends that he's been with for the past three years. He seemed to have a good time!

All in all, not a shabby day. Now I'm off to love on and enjoy my babies!

Bennett's Journey

Bennett Playing Soccer!

The Climb!!!

First Words???

I'm Walking!!!

Bennett's 15 Month Check up

BIG Milestones!!!

Finally Better

Fortuitous

Little Lungs!

Bennett's Homecoming Anniversary!

My Little Yogi

Operation Crayon was a Failure

Developmental Review

Don't Blink!

Crazy Dude!

What NOT to say to the mother of a preemie

How big is Bennett???

Well THAT wasn't fun :(

Bennett's First Trip to the Beach!

Precocious (warning: baby bum)

Unexpected

Please pray for the Freeman Family

Bennett's First Birthday Party

Bennett's 1 Year Stats!

HAPPY BIRTHDAY BENNETT!

We Marched for Babies!!!!

I cannot resist...

Another Developmental Review!

Mad skillz!!!

Last Synagis Shot of the Season!!!

Happy Easter!

11 Months!!! *sniff*

The good news is...

Not Again!!!!!

Baby got BACK!

Wow, a whole year has come and gone!

A scary lesson to be learned!

Bennett's Follow Up was GREAT!

Bennett is HOME!!!!!!!!!!!!!!!!!!!!!

Whispering so I don't jinx it....

Bennet...Bennett...Bennett....

Bennett has been transferred to a special hospital

Bennett is in the hospital

Poor little sickie boo boo bear :(

Bennett's Pulmonology Appointment Yesterday Got Canceled

A good cure for a case of the Mondays!

So much for low muscle tone...

Developmental Review

Bennett has a new friend!

Bennett's 9 Month Stats!

Happy 9 months to Bennett!

Sweet sunny smiles!

Mel & Me

TWOFERS!!!

Update on Bennett

Bennett is sick :(

Cute videos!

Join Bennett's Team!!!

14 oz in 14 days!

For Nana!!

Bennett the Pin Cushion

Totally unrelated to either of my children....

Happy New Year!!!!

Ho ho ho!!

Picture time!!

Small Updates

Another precious preemie needs your prayers!

Picture Tag - A blog game!

Developmental Review

Way to go Bennett!!!

Lots of Pictures - 7 month birthday and visit with Santa

Emotional Recovery

Solids and Sleep!

Thankful

Prayers Needed for a Friend!!

Bennett's Visit to the Gastroenterologist

Yet another reason why c-sections suck!!

How Preemie Moms are Chosen

The "official" 6 Month Appointment and another FIRST!!

11 Months!!! sniff