Tuesday, September 30, 2008

We're 6 Months Old Today!!

Monday, September 29, 2008

Just some fun things...

We went to the mall yesterday and Evan volunteered to model some winter hats. Evan squealed with delight when we showed him this hat.

But we went with this one because it actually fits his little noggin best.

And Cameron is quite the talker now, though he only knows one sound:

Click Here to See Cameron (can't figure out how to upload videos through Blogger)

And here's what Cameron thought of my getting him all dressed up. Nice gesture, huh?

Monday, September 22, 2008

Dear Medical Supply Company (an open letter)

Dear Medical Supply Company,

I'd like to take this opportunity to thank you from the bottom of my heart. Your equipment was exceptional, your service superior, and your staff are wonderful to a fault. I mean this sincerely and with no sarcasm whatsoever. I really do. But as of today, September 22nd, 2008 we will no longer be needing your services.

So you can take the tubes and wires, the electrodes and belts, the portable oxygen tanks, the super hot and monotonously loud oxygen condenser, and all of their accoutrement, the false alarms, the sticky electrode welts, the piercing beeps, the startling middle of the night rousings, the extra 25lbs of gear attached to my baby 24/7, the awkward stares and questions from strangers, the pitying looks, the stress, worry and anxiety of our whole family and all our friends and respectfully.... stick it all where the sun don't shine!!

Just like his twin brother Cameron is a wire and tube free baby! He no longer needs his apnea monitor. I can officially say that he is cured of his chronic lung disease and need for supplemental oxygen assistance. You may feel free to pick up your equipment at any time. The sooner the better.

Proud Mommy to two very healthy baby boys!

Friday, September 19, 2008

The Dreaded 6 Month NICU Follow Up - (long)

We had our 6 month NICU follow up on Wednesday and it went as I expected, but now I am very emotionally and mentally drained. It's taken me two days to build up the motivation and courage to post about the day and the results from our visit. I think posting this will help put it all into perspective for me, but I'm weepy already so this may take longer than I thought.

I realize that as micro preemies go these guys got off really easy even with Cameron coming home on oxygen. And there are lots and lots of worse things that could have happened; ROP, continued need for oxygen assistance, the list could go on and on... These guys were NICU stars. But they are lagging more than expected in a couple of areas and after waiting on pins and needles for a traumatic early birth, 68 days of roller coaster NICU time, 3 months of working with a physical and an occupational therapist, my own personal medical condition, I think I'm starting to run out of silver linings and steam.

The purpose of the 6 month NICU follow up is to see how the boys are doing physically as well as developmentally to the best of their ability based on their adjusted age. This is an ongoing evaluation that we will go to every 4 to 6 months until they are 3 years old. The boys are actually 5 1/2 months old, but because of their prematurity we will evaluate them at their adjusted age of 2months 26 days as of the day of our visit with the doctors at University of Maryland. This visit is not only a doctors visit, the boys are being evaluated as part of a study of premature babies in Marlyand. Some of the specialists the boys may see/will see include: Developmental pediatrician, nutritionist, occupational therapist, physlcial therapist, psychologist, education specialist, speech and language pathologist, registered nurses and a service coordinator to coordinate all these people.

The day went pretty much as I had been warned, somewhat long wait times but nothing so bad as to make me want to walk out on the appointment, but it did interrupt their eating and napping. The guys both pretty much threw up all their lunch time bottles during observation because so much of the examination required that they be laying down on their backs and bellies. And the room we were in had the thermostat set to 61 degrees so it was way too cold for very low birth weight babies to be naked, and yet that's what they had us do for the majority of the time we were there. Unpleasant for the babies and for my mom and me.

We met with a Neonatologist, the head of the Neonatology department and a representative from Maryland's The Arc: Early Intervention for Infants & Toddlers program (whom we are already working with on the boys physical therapy and other programs to come). I think the head of the department was only called in after the neonatology doctor determined how far behind the boys were and wanted a second opinion, which in my book never bodes well. But she was very nice and enthusiastic and I liked her a lot.

Also in observance was a medical student named David who was charmingly fascinated and excited to sit in on our evaluation, and I like the thought that we were able to help someone in their professional development. He had never been through one of these before either, and some of the things he learned about that day will actually be practical experience for him in the future. He had never seen infants as small and premature as mine, infants with inguinal hernias, an infant with penile chordee, hypospadia and cobra headed penis all in one, and he had never seen a baby post oxygen weaning, so this was a great experience. The head of the Neonatology department was very good about involving him in the physical and even showed him a few things with regards to reflexes and let him try them on the babies (with our okay). It was a neat experience.

I digress...

The boys are measured developmentally on seven areas:

Vision, Hearing, Sensory developmental domains - basic physiological functions of these areas,

Social and Emotional - skills in relating to others,

Cognition - thinking or problem solving skills like putting hand to mouth or social smiling and anticipatory behaviors,

Gross Motor Skills - ability to use his body o perform large movement skills including ability to control his head and trunk, swat at things,

Fine Motor Skills - ability to use his hands and fingers,

Communication - ability to use skills in language and communicating by sounds words and gestures like changes in breathing, vocalizing coos in response to being spoken to,

Adaptive - skills in self-care like being able to eat from a bottle competently, having a good suck reflex, coordinating breathe, suck, swallow process.

Our boys can only do the things I've highlighted in green and some of this only very recently. At the age of 3 months the boys should be able to do the following: Open/shut hands, raises head and chest while lying on stomach, support upper body when lying on stomach, swats at things near him (they do this but barely), mouths objects brought to face (they make ugly faces when you put something other than a bottle or pacifier in their mouths), reaches and grasps with both hands, can hold a rattle (but can't control it or control how long they can hold it). Also they should be able to watch and recognize faces and familiar objects and follow moving objects, turn head toward direction of sound (they hear but can't always look because they have terrible toaster head), imitate some sounds, babble (they just started this this week), react when you call their name or sing or attempt to play, imitates you when you stick out your tongue, smiles and grins, imitates your movements, stares at hands and fingers, plays with fingers, brings hands to mouth (they only started doing this one this weekend but only when there is nothing in the hand).

By comparison (and to give you a gauge as to why I'm so down in the dumps) a baby at their actual age can do or is starting to do the following: try to feed themselves or hold a bottle, rolls from side to side onto tummy and back again, sits with assistance, transfers objects from hand to hand, uses a raking grasp, starts to use hands & knees position, can closely track moving items, notices items far away, responds to sound by making sound, babbles chains of consonants, babbles and pauses waiting for a response, is interested in mirror images, laughs out loud/belly laughs, find partially hidden objects, explores hands with mouth, struggles to get objects out of reach, may start to respond to their own name, drops things and expects you to retrieve them over and over, has distinct preferences for feeding times or types of food.

At this visit the boys were both observed to be at the same skill levels with Cameron slightly more advanced in a couple of areas. Their strengths are socially emotionally on target for a 3 month old baby They show anticipatory excitement towards mom and dad and Granny Cathy the primary care givers. They are both on track as 3 month olds for Cognitive development as they can both track toys moved in circular directions. And both are on track as 3 month olds for Language and cooing when talked to.

Areas they have significant work to do on are Gross Motor skills - Chest up prone, forearm support prone, swatting, and kicking, stepping and standing. Also Fine Motor skills is lacking tremendously and they need to work on hands being unfisted so they can touch and grab as well as reaching for objects. They are performing at 1 to 2 month old levels right now. They will continue to get physical therapy and start occupational therapy, both of which overlap in many areas and functions.

The tone from both doctors was very serious and almost urgent as though we are kind of racing the sun. We go back for another re-evaluation in 4 months and they are expected to be able to lift their heads and chest off of a flat surface. We're so far from that now it seems like we won't be doing it in time for the next evaluation.

I know I should never compare my guys to full term babies but it's very difficult not to. And it's difficult not to compare them together too, and I will always strive to encourage people, myself included, not to compare them. But the motor skills have got to get in check. The guilt that my body failed them has finally hit for the very first time and on top of that I feel like I haven't pushed enough with the therapy they have received or done enough of the therapy I've learned so far with them during their limited waking hours. I feel like I'm failing them and no one else has the same sense of urgency or panic that I can't squash in myself. And this is just the tip of the iceberg.

Well, I guess I better get workin' on their fitness now.... only so many hours of awake time to do it!

Sunday, September 14, 2008

Because It's our Favorite Holiday

... And it's just around the corner!

My husband has an annual obsession with making his own Halloween costumes. I have to say that despite his untrained background he has quite the artistic eye and is a master at jury rigging up some really elaborate costumes. Below I've posted the best of his costume collections from over the years. Tell us which one is your favorite in the poll on the right!

This year's costume is still undecided if he even finds the energy and time to make his own this year. Normally he would have been working on it beginning in May or June but I had him otherwise preoccupied this year. (Sorry Babe! Next year will be so kick ass!) But now he's got to make three costumes each year. In the immortal words of our good friend Shakes: "I don't know Drew... I don't know if you can pull it off!!"

Here are the costumes you can vote on in no particular order:

Twinkie the Kid

Lion O - Thundercats

Bender - Futureama

Ghost Buster

Optimus Prime - Transformers

So what are you going to be for halloween?? Are you brave enough to show pictures of your costume? I'll go first, here are two of mine:

Taylo (a la JLo) - for the record I was called Taylo for years before JLo and LesLo ever got their monnikers. I even had the big padded ba-donka donk backside!

Laura the Elf (with pointy ears):

Laura the Sim: (by the way, you can't tell in this picture but my green diamond actually did glow in the dark)

I'm not as adventurous as my husband, but then again you wouldn't catch me dead in a Cheetara costume if my life depended on it, especially now that I've had a couple of kittens!

Vote for your favorite costume in the poll to your right!

RSV Season - Useful Tools

Here is the link to the makers of Synagis, the vaccine that is given to preemies during the deadly RSV season to help fight of infection. Sign up today and they will send you a free hang tag to hang on your stroller warning people to either wash their hands or back off.

Also, here is the link to where you can order your own RSV - Back Off tshirt:

Lastly here is another company My Tiny Hands that will make signs for your stroller if you don't want the free one from Synagis. These seem more eyecatching than the Synagis ones, though you can probably make your own too.

PSA: Help Low Birth Weight Babies Around the World ~ Babies just like mine!

I belong to a Facebook group called "You know your a preemie parent when..." and the administrator forwarded this PSA on to everyone and I thought I'd do the same here. There is no monetary donation needed, just your vote to help American Express pick a worthy cause. Please read the cut&paste below:

Hi Everyone-

This is Lisa, your administrator. First of all, yay us! We are over 150 members! I had no idea this group would speak to so many people here on Facebook, but I am glad that you are all here!

I received a message a few days ago from someone involved with a nonprofit dedicated to providing incubators to help low birth weight babies. I am sure we can all appreciate how important these devices are!

Take a minute to consider participating. Here is the message that I was sent:

Happy Parenting!

Hi, Lisa.

My name is Razmig, one of the co-founders of Embrace (, a non-profit building a $25 infant incubator, aiming to address the 3.5 million avoidable premature infant deaths each year worldwide, the vast majority of which are in the developing world.

We're a new non profit out of Stanford university and got some funding / grants, and are now in the running for $1.5M in funding from American Express (we made the top 25 out of ~1,200) projects.

I hate the popularity contest thing, but oh well, we need to get out the vote so we can get this funding and save babies. Top 5 project vote getters would get some funding.

You can vote here:

Would it be possible to share the information above and / or below with your 'Parents of Preemies/Premature babies' group (kudos on a great and active group)?

If you can help us get the word out in any other way, we would REALLY appreciate it.

Thank you for your time, Lisa.


Please help Embrace get $1.5 million in funding simply by voting for us in the American Express Member's Project.

Here's what YOU can do:

1) For American Express members: click on
and login to American Express to vote for Embrace. There is NO donation required. American Express will donate $1.5 million to the project with the most votes.

2) Forward this mail to as many of your friends as possible before September 29th -- every click counts, so please ask them forward it to 15 of their friends as well.

To thank you for your help in this great cause, if you forward this email to 15 or more people, you are eligible to enter a lottery for an all expense paid trip to visit Embrace in India. Visit for details.

Thanks for your support!

P.S. Thanks to everyone who voted for Embrace in the last round of this competition! With your help, we advanced to the next round -- top 25 out of 1190 projects. We'd like to ask for your help in building this same momentum to help us win $1.5 million!

About Embrace:

Embrace is a startup nonprofit organization that aims to save 20 million low birth weight babies born every year through a low cost infant incubator. While traditional incubators up to $20,000, Embrace is an incubator that costs $25. The founders are a group of engineers, MBAs and public policy students from Stanford, Harvard and Kellogg. You can find out more about Embrace at

Tuesday, September 09, 2008

5 Months

Thursday, September 04, 2008

Big Big Baby News!

He did it! Cameron has finally weaned himself off of oxygen assistance!

We couldn't be more relieved that the end of the evil oxygen concentrator and the portable oxygen tank has arrived. On Monday I went to the ER for gallstones, and on Tuesday I decided it was time to start a more aggressive approach to weaning. As our usual prescribed method I dropped Cameron down to 0% oxygen while he was deep asleep. An hour went by, two hours, three, no desatting at all! Four hours.... He stayed at 0% oxygen for the last 96 hours and had no desats to speak of at all. He did have a couple of bradys and apneas, but I'm absolutely certain they were false because they all happened while I was holding him and he was awake and smiling at me. I'm very tired. We all are. Well, except of course for the boys who are just as happy as can be.

Taking Cameron home on oxygen was the scariest decision we've ever had to make in our lives and it was the best. It has been a very long road, and we're not out of the woods yet, but the biggest baddest hurdle has been surpassed and we are ready and able to tackle anything. Today another milestone has passed. He's also 9lbs 8oz today, a far cry from his 2lbs 14oz at birth.

Cameron before:

Cameron after:

Today was the first time I have ever been able to gaze upon my oldest baby's face without tubes. It is one of the most moving and beautiful things ever. And he smiled the entire time I took the nasal cannula tape off, usually a painful sticky process.

Not to be forgotten or out done in the cuteness factor is Evan who is now a whopping 7lbs 14oz. A long way from his 1lb 7oz!

Both boys are doing well developmentally at 5 months old (OMG! It's been five months!!?!?!??) though at their adjusted age of almost 3 months. Cameron can hold his head up pretty well and is reaching for things to swat at. Evan is about two weeks behind in the same skills but working very hard at tummy time. Both boys as you can see have become quite the social butterflies and have long talks with their toy stuffed puppy dogs and flirt with Mommy and Granny Cathy all the time. Things are going so well.

I am such a happy Mommy and Drew is such a proud Daddy!

Here's the boys latest picture together. Now that Cameron has no nose tubes I can't believe I have to say this but... Evan is on the left and Cameron is on the right! I'm feeling a little verklempt.

Tuesday, September 02, 2008

No one told me this would happen!!!

I spent the better part of the evening last night in the Emergency Room for what I thought was an oddly reoccurring case of food poisoning only to learn that I have several "small" gallstones. And that there is no cure, only that it will continue to happen until I have the gallbladder removed. Lovely. Just lovely.

I read each of my pregnancy books cover to cover and none of them ever said anything about GALLSTONES!! None of them had a section on What To Expect Will Happen To You AFTER Having a Baby. How convenient. It's like signing a contract without being able to read the fine print.

Sagging boobs, pants that don't fit the same way they used to even though you're back to your pre-pregnancy size, post-pregnancy swelling in the ankles, wrists that get bad bad bad carple tunnel syndrome from carrying babies and car seats, and gallstones are some of the many lovely things that can and often will happen to women after giving birth.

Luckily it's an outpatient surgery done laproscopically (sp?) and recovery is very quick. Never the less, I now have to have another surgery. And the side effects of not having a gallbladder (which is the organ that creates bile to help you digest your food) is that you can't eat fried, greasy, fatty foods including some veggies. The result is an unpleasant bloating and odoriferous side effect.

Guess I'll be giving Evan and Uncle Mike a run for their money, huh?