Happy New Year! 9 Months Old

Happy New Year!

We are 9 months old now and getting so big! Our New Years Resolutions are simple. Grow, become more active, and start sleeping through the night. We are looking forward to meeting everyone in the new year and learning more silly things to do to throw Mom & Dad for a loop. We can't wait to start participating in activities outside the house where there are other kids to play with.

Hopefully this year will be a great one for all of us, especially all the preemie mommies and daddies and the pregnant mommies and daddies and newlyweds that we know. We love you all and wish everyone the very best in 2009.
Cameron

Evan

Standing Up

For about three months Cameron has been able to stand flat footed when we hold him up. It is the best way to calm him when he's frustrated, except when he's flinging his head backwards from reflux. For Cameron everything is more interesting when he's standing up. Last week the PT noticed that he's trying to take little steps with his left foot, though not his right yet. He has started taking great giggling joy in locking his right knee when we change his diaper. Today when I changed his diaper each time I had to fight and out smart him to get his knee to bend. And each time my tricks didn't work he would look at me and give a belly laugh (he heh, you fool woman!) and I would try again.

In a leap for Evan, he has begun as of yesterday to stand like his brother! It felt like this day would come. He's only three months behind with his muscle tone but yesterday like magic he suddenly just got that he's supposed to straighten out his back, lower his legs, lock the knees and stand flat footed. And he's so proud of him self he smiles every time. I'm so proud of him and just stunned how the light bulb just seemed to click. It's the first time where something like that has happened for Evan.

Also yesterday Cameron grabbed a double helix shaped rattle in one hand, passed it to the other hand, where Evan grabbed the rattle from Cameron and passed the toy to HIS other hand. Sadly I missed the event, though my mother called me screaming to come quick. Pretty cool. And since that event both boys have been super interested in the baby laying next to them or in the mirror.

But they aren't napping for crap, and if I get one down the other wakes up. Hopefully they go to bed on time tonight. And the dogs have been after me to play and chase them all day, poor things. Once Drew gets home we can do more with them too. Though Mommy's got things to work on that do not require the assistance of babies OR big puppy dogs.

11pm edit - during his diaper change Evan was staring at his feet and grabin them, something Cam has been doing for a week!!

Baby Boxing... Round 1

I hope everyone had a wonderful holiday. We had a nice quiet Christmas at home and were as usual spoiled by all our friends and especially by our family. Of course the babies made out like bandits on their first Christmas.

The quiet didn't endure for too long however. In what I am sure will become a daily event in our future we had our very first knock down drag out Baby Boxing match.

Mom-mom Judy gave the boys new rattles which they absolutely loved on sight. Both began shaking their respective toys with great enthusiasm. It wasn't enough to shake them from the elbow, which they can actually do sometimes. Oh no! These are cool, new noisy rattles with bright colors and relatively pointy hard edges. Laying on the floor side by side the boys shook the rattles with great enthusiasm, their full arms outstretched. Cameron made a quick switcheroo to confuse Evan by swapping his monkey rattle from one hand to the other. Evan was straight and true taking advantage of Cameron's momentary open weak spot with a lightning fast southpaw uppercut. He hit his unintended mark with as much might as his four inch long chicken arm could muster. Thus resulting in Round 1 completed with Evan whacking Cameron in the eyebrow really hard with the remarkably pointy end of a hard plastic rattle. This caused an instant TKO to Cameron, complete with whales, tears, shrieks, and sobs.

It was really difficult not to laugh, and I have to admit that I am a mean mommy and couldn't help myself by snickering while trying to console Cameron. It was a bit like watching Time Warp to see the thought process go through Cameron's head registering his pain and shock. Evan gave a very heartfelt apology as it truly was an accident that in his excitement Cameron's head got in the way. Cameron has forgiven Evan for this infraction on their brotherly truce (cleverly negotiated by their attending nurses while enjoying their lovely stay in Hotel AAMC's NICU to resolve any outstanding animosity for Evan's necessary forcing of Cameron's early eviction from Mommy's belly.) Cameron doesn't seem to be the grudge holding type, so I think Evan is okay for now. However, Cameron did give the offending toy a very stern furrowed brow look when I later offered his opponents weapon of choice to play with shortly afterward.

It's rough being a baby.

Out of my way Mom! I'm driving like Daddy!


You're so silly Daddy!


Ewwww Chewie! Your breath stinks!


Happy Holidays Everyone!

Today

Today I saw Cameron pass a toy from one hand to the other, not once but three times.

Today I saw Evan staring at his open right hand while sitting in the bath. I poured water over that hand and he turned the hand palm facing up with fingers splayed open to "catch" the water. He did this about six times.

Today Cameron spent half his bath time sitting in the upright seated position side of the baby tub with my hand gently holding him in place so he would not tip over to the side. It's a long way from not even fitting in the newborn sling so his butt floated around in the water.

Today they were both able to eat MOST of each bottle with minimal screaming, though it did take at least two hours to eat each of their bottles and required that we get them to fall asleep to drink it.

Today the boys have slept remarkably well, probably because they've eaten so well.

Today I got to sleep more than 4 hours thanks to my wonderful husband and mother for giving me the break I needed.

Some silver linings for my holiday.

Update on Evan's RSV and Camerons stuffy nose

Evan is doing remarkably well. He's not having any problems with his breathing though Friday, Saturday and Sunday were the worst of his congestion. I barely slept more than a cat nap over those three days. As of Tuesday things started looking better during the day with the worst at night. We had three different humidifiers going in the bedroom at one time, but it works. And we did a few steam showers during the day and evening and used Viks Baby Rub to loosen things up. It seems to have worked like a charm.

Cameron's symptoms are totally different and we're still not out of the woods. He first had a stuffy nose for a couple of days starting on Saturday, but by Monday it turned into a snotty runny nose with some minor coughing. Then just yesterday his cough turned more violent enough to make him throw up most of one bottle, but otherwise he seems fine and is in great spirits. We are still hoping that he doesn't catch RSV but it's still a probability that it will happen.

Here are some of our recent photos that we took this week. We are VERY behind on holiday cards, but still trying to get them out though it may be more like New Years cards instead.

Evan


Cameron

Cameron has a stuffy nose....

Ugh! This virus moves so quickly! Yesterday Cameron was his usual happy go lucky self but as today has progressed we've seen a clear decline in his mood and as of tonight he has a wet stuffy nose that I've already had to suck clear so he can breathe. And I already have to do it again. I'm watching the guys like a hawk because I'm so scared I'll miss one of the symptoms that means we have to rush to the ER.

Evan has RSV

It's official. Evan has RSV. We almost went to the ER at 3am because he was wheezing so bad but the on call pediatrician told us to get him in a steamy shower and then see how he does after sucking the snot out of his nose and he was quite a bit better. He can barely lay down for diaper changes because he gets all stuffed up again. We went in to our regular pedi first thing this morning and after having an albuterol nebulizer treatment to dry up his congestion he was still wheezing. Our fear is that Cameron will also come down with RSV very soon too, but he seems to be having no problems at all.

Poor Evan won't eat more than an ounce every three hours. The pedi wasn't too worried about that but she said that if he stops eating all together for 24 hours or has any further signs of breathing problems or a high feaver come in to the office or just go straight to the ER. We're looking for signs that his respiratory rate is higher than 60 breaths a minute. We are very familiar with counting respiratory rates because of Cameron's PLD (Pulmonary Lung Disease).

Ugh! I was hoping we'd make it to their 1st birthday in March, the end of RSV season before their first cold but at least we made it to 8 1/2 months old. The boys have been moved to seperate cribs for the first time. We've seperated their toys and anything else they usually share just in case. Everything has been washed and sterilized and wiped with Clorox wipes over and over. The only thing not spotless in this house are the dogs. We just don't have the energy to wash them too, and boy do they need it.

Oh! And when I got home the power company was at our house to cut down two trees. They were supposed to call me a day in advance to let me know they were coming out so I could keep the dogs in the house. I wish they had so I could have asked them to come another day because I had to walk the dogs so they could go to the bathroom and since I can't walk them together on my own I had to do two walks in this cold windy weather.

Ugh, so tired. We're all so very, very tired.

Cross Your Fingers: Evan's first cold!

Evan has his first cold. The poor little thing is struggling with his reflux and now this cold. It started yesterday with his being very irritable, the reflux at an all time horrible where he hasn't been able to eat more than an ounce or two every three hours. His little nose is dry and packed with boogies all the time and shrieks when I try to clear it out. We had an all night scream fest with him last night, and Cameron was not going to be left out of the fun so he joined in too. They ate horribly all day today and this morning Evan's little nose was runny with thick boogies and he hasn't slept hardly at all. Then tonight at the 7pm bedtime bottle he threw up a lot with a lot of mucus in the spit up.

I was hoping our first day in the newly converted den/playroom would be a lot more fun but it was overshadowed by his crumminess.

I'm obsessed, terrified, and freaked out. I'm scared to death that this little head cold will become RSV. It can happen so fast and it's so easily spreadable that it wouldn't take much for Cameron to catch it too. I really hope this little cold goes away as fast as possible. If Evan continues to eat poorly overnight I will take him in to the pediatrician first thing tomorrow morning. If he's lost too much weight and if they test for RSV comes back positive they may decide to admit him to the hospital.

Cross your fingers for Evan and Cameron. My little babies need all the luck they can get. They haven't had too much this year and they deserve so much more.

8 Months Old!

I'm very belated in getting this posted but things have been a little hectic what with living from one feed to the next.

The boys turned 8 months old on November 30th and they are doing pretty well developmentally.

Cameron is now 12lbs 6oz and performing at the level of a 5 or 6 month old in most things and is almost ready to roll from his back to his belly. He can also lift his head from a prone belly position but not for longer than a couple of minutes. He can hold two objects and clang them together, almost passes one toy from hand to hand, and loves to bang toys against his bottle while eating or on the tray on his swing. I have just given him his first 3" spiked sensory rubber ball and he's almost able to hold it with both hands which is a big deal.

Evan now 10lbs 11oz and is still fairly behind Cameron and doesn't like to hold his head up but can and will do it and will even look to his left which was once almost impossible for him to do on his own. He will tolerate holding his head up for tummy time if he does it on my chest or against my legs or while playing Super Baby in my arms. He can not hold two objects at the same time very well but he's getting there.

As for our Failure to Thrive and Reflux issues I have managed to get us another appointment with the GI specialty clinic at the University of Maryland. I have many choice words for Johns Hopkins GI clinic. We missed the first one last week because the battery died in my car just as we'd piled everyone in to go there. The next appointment was for January 21st but I managed to score a spot that someone canceled on January 5th. I will call every day to see if I can squeeze the boys in earlier. They are still struggling to eat and we have met with a physical therapist who has extensive experience with three children of her own who have severe reflux and she could not find any other tips or tricks we haven't already tried. They eat about 1tbsp of rice cereal mixed with formula, and have made it through YoBaby yogurt with prune juice, and are currently working on avocado. We also use a Nuk gum brush to desensitize their mouths before spoon feeding the rice cereal because they don't like the texture. We are looking at buying their high chairs very soon so we can feed them in a chair other than their bouncy seats. It will be easier on our backs too.

There was a four day period last month where the boys slept from 10pm to 4am but we have since reverted to waking every four hours to eat. We are also struggling to stick to a schedule because feedings throw everything out of whack. Thankfully it is a particularly bad RSV season, so I'm told, so we can't go anywhere. Now I need to work on my personal anxiety because everything seems to get me amped up or set me off and the boys are picking up on that.

We are working on our Holdiay photos but with limited success so far. And we are very slowly converting our den/storage room into a play room but it is posing quite the challenge as the boys are not leaving us much time to get anything accomplished. We are also stimied by the fact that the electric base board heater in that room is not strong enough to warm the room which was once a garage and does not have insulated walls.Aside from that things are going about as well as can be expected. I wish I could say that I have been enjoying this babyhood time of my boys but it just seems like it's one thing after another and I'm so exhausted and ready for everything to catch up to "normal", whatever that means. I feel like our whole household is burning the candle from both ends and from in the middle as well.

And good luck with that!

Today we went to the Johns Hopkins University Pediatric Gastroenterology Clinic to have the boys evaluated for their reflux and come up with a way to improve their weight gain. The clinic is impressively large and well organized. We got in, registered like as if we were at the DMV only much faster with less creepy people around, got the babies weighed in with their vitals and were speaking with a Nurse Practitioner within a half hour of our arrival.

We reviewed their NICU history, their diet history, their medicines history, their patterns, and symptoms. The Nurse Practitioner did a very brief physical evaluation and said that because the boys are not throwing up there isn't much they can do for us. My response was I don't think that we're getting any relief from this visit or help with their being categorized as "failiure to thrive" and why did we bother coming and she said that she'd talk with the dietician and the doctor and let us know their recommendations.

An hour later, we were just about to pack up an leave it took so long, she comes back with the doctor and they tell us that the bottom line is that because the guys aren't showing the typical signs of reflux (which is basically all the things they are doing now, but that they should ALSO be throwing up a whole lot more) that they don't think it's reflux. And because it's not possibly not reflux (because they aren't throwing up), and because they are going by the babies adjusted ages which are exactly in the middle of the peak reflux stage of most children, and lastly because they have never had a good experieince with eating due to their extreame prematurity (months of tube feeding, gas and severe bloating issues, and early reflux with vomiting that has been resolved with Prevacid) that the doctors don't have any other suggestions except to give us some antibiotics in case there is some kind of infection in their upper GI and to change their formula yet again and to call them back in about 8 weeks to see if they grow out of it. And because they think that the boys might grow out of it they won't recommend an upper GI proceedure because they are so little and it's a very invasive proceedure involving sedation and a brief hospital stay.

So there's nothing they can do to help with the process of eating. And there's nothing that the Occupational Therapist can do to help with eating eather because she thinks the problem is a medical one and will only follow up with us on a monthly basis until we get the medical aspect of all of this resolved. But everyone agrees that they are grossly underweight, not gaining enough weight, and are too small for their ages even given their prematurity. So now because they won't work with us we can't get into the growth and nutritional program at the Mt. Washington Hospital to help fix the "failiure to thrive" issue.
I'm trying to be my kids advocate but I feel like I'm hitting a brick wall yet again. I'm calling the pediatrician tomorrow to give her the update on all of this because I don't know what else I can do. I will also switch the guys back to the Enfamil Enfacare preemie formula because it has the most calories in it and we will fortify it and go back to adding the vegetable oil to every bottle for even MORE calories. And we will still take upwards of two hours to eat maybe 4 ounces.

Oh and I will start trying to introduce solid stage one foods in hopes that will help too. And I will change their feeding schedule from every 4 hours (at 8mos of age) back to every 3 hours just to keep a steady stream of food in them as best I can.

This vicious cycle is just getting worse. They can't eat, so they don't grow, and they can't sleep, so they don't develop during their sleep cycles, and throughout all of this they are screaming every time they have to eat. If this isn't forcing bad eating habbits then I don't know what else could. My babies will be anorexic before they even hit pre-K.

It's a good thing this is RSV season so that we can't go anywhere because the aspect of feeding these guys in public is just frightening. I just can't get over the fact that this is something they will just grow out of. It doesn't seem right.

"Every day is better than the next."

Just when you think you've got it all figured out it just gets worse. They are back to square one today with the reflux. We can barely look at a bottle, let alone touch a bottle to their lips and all hell breaks loose for both of them. Now they hear each other crying and they have to scream together. It's killing me to hear and this see them struggle and in pain ALL. THE. TIME. They are withering away literally and I can't figure out what to do to help them. We have to let them scream until they are so tired they will dream feed in their sleep. The OT who came Wednesday couldn't get over how whiny, miserable, and easily agitated these babies are, even in their dim quiet room and just kept asking "Are they always like this?". There was nothing more she could do to help them. All because of reflux. This GI doctor better be the shit or I'm going to go postal on someone.

Follow up to Reflux Hell

So Friday I called the Pediatrician and she changed up the boys medications and told us to stop giving Prevacid and the vegetable oil in their bottles, increase the Zantac from .6 and .7mls three times a day to .9mls four times a day. By Saturday I was calling the on call pediatrician begging to give them the Prevacid and stop the Zantac completely because things had gotten about 10x worse! I'm glad I did it too because once I gave it to them they were a bit better and there was less shreiking and more eating. The Zantac is really making them hysterically irritable and refuse to eat anything.

On a bad note, the boys gained weight in the last two weeks but not nearly enough. Evan only gained 2oz now weighing 10lbs 2oz and Cameron gained 4 oz now weighing 11lbs 9oz. They have previously been trending about 1 1/2oz a day which is ideal, so they really haven't gotten any weight gain these last two weeks.

We have since cut out all the Zantac and changed their formula to 1/2 Good Start and 1/2 Enfamil AR and tonight I'm expecting night #4 of SLEEPING THROUGH THE NIGHT! I can't believe it! They go to bed at 7pm and have a bottle at 10pm and then sleep until 4am. It's amazing! I can't beleive it and hope it continues this way for a loooong time.

We aren't able to get in to see the GI specialist until the 25th but as long as things continue as they are right now or better I will be okay. We also met with an Occupational Therapist today but she really couldn't help us much because we need to ge the medical reflux issues resolved before she can pinpoint where we can use her help. I am already doing everything she was able to suggest so far. I just can't handle another week like last week.

Okay, off to make bottles for the night. Keep your fingers crossed that they continue to sleep through the night.

Our Reflux Hell

Have you ever wondered what it's like to bottle feed two babies at the same time? It's daunting, really scary at first. The very first thought I had when they said we were having twins was "Oh my god my poor boobs! How do you feed two babies?" It was something I thought of many times a day while pregnant. And bottle feeding certainly did not seem nearly as daunting and scary as breastfeeding them. And frankly, I still don't get how other mom's of multiples (MoM's) can do either breastfeeding of two or more or tandem bottle feeding. I just don't get it. I'm struggling to bottle feed them one at a time. And I have help every day too!

Now, if you have never tried breastfeeding let me just tell you there is nothing natural about it. It doesn't just come to you just because you're a woman with all the working parts. Both you and the baby actually have to learn how to make it work. And it is not for those that are weak or faint of heart. Where do you put your arms, how do you position the baby, how do you know if you're doing it right, how much are they getting to eat.... Not to mention what it does to your poor boobs. All very awkward and stressful. And if you have never had a preemie then I'll tell you that breastfeeding a preemie, especially one that was born very early, is extremely difficult. Not only are they way smaller than your one boob alone, so small that their little mouth can't open wide enough to even get a good try at it, but that you can almost suffocate them if you don't hold them just right. No joke! The doctors and nurses at the NICU said they won't even let you try breastfeeding a preemie until around 32 weeks because their trachea is like the thinnest tube of rice paper and all you need to do is hold their head at ever so slightly the wrong angle and you can restrict their air way.

So thanks to the less than enthusiastic, overbearing, and horribly organized lactation department I was never able to overcome my anxiety and frustration to master the art of breastfeeding. I exclusively pumped for 18 weeks. Proud of it, but I'm glad it's done. Pumping is something I'll have to save for another post one day.

So just how do you feed two babies a bottle at the same time? As I understand it, the concept of feeding two babies at the same time, according to the MoM's I've spoken to works like this: you put each baby in a bouncy chair or a Boppy pillow, put said baby filled chair / pillow on the floor or couch or coffee table on either side of you, strap on the bib, grab a burp cloth or two, cram a bottle in the mouth of each baby and burp occasionally until the milk is all gone or baby refuses any more. The books and lactation demons, I mean consultants, all say it should take about 30 minutes to feed a baby, and when feeding two at the same time you might take upwards of an hour because you stop to burp each baby or deal with some spit up.

But what they don't tell you is how to deal with everything else. What else is there to deal with you ask? Ohhohohoooo well let me just tell you! Actually I should video tape it but it would probably bring you to tears from either laughter or commiserate pity.

Here's how I feed my guys at the same time.

First we change each baby's diaper (a habit from the NICU cares process we've kept). While you're changing each diaper the baby in front of you is usually pretty content, but the one waiting their turn is screaming urgently for their turn to be changed or to hurry up and put the bottle in their mouth. Once each baby is set up in their bouncy seat the fun really begins. For the first 5 minutes there is the blissful sound of two infants happily chugging their meal. I wait until one of them decides they've had enough and need to be burped. Then I extricate the other baby's bottle as soon as they release their jaws of life latch. (The jaws of life latch on the bottle is something these babies developed only after many months of working with an Occupational Therapist as they had really horrible breathe, suck, swallow timing and a terrible sucking latch ability.) Things are still pretty calm at this point, until I start to try and burp the first baby. That's when our reflux rears it's ugly head.

Following are the possible/probable scenarios that happen at every single feeding for both boys in order of likelihood (and it doesn't matter if they are being fed at the same time or on a one on one basis):

1. One full hour or more of screaming, shrieking, back arching, hysterical fits after the 1st ounce is eaten because of reflux and painful burps. The baby will start shrieking horrible piercing sounds, arching the back, flailing arms and legs, flinging their head back suddenly when you are least expecting it like a backwards head first death dive to the floor only for you to frantically catch them at the last second. We used to have vomit volcanoes too but thankfully that was fixed by prevacid and zantac. After the 1 to 2 hours of all of this they are exhausted and fall asleep at which point I can dream feed about one to four more ounces but it really throws off our schedule.

2. Happy food avoiding babies who will make themselves gag when you put just the tip of the nipple in their mouth and move their heads from side to side or up and down to avoid the nipple. They also like to smile, squeal and chat, and (while I'm actually thrilled at this long awaited development it's frustrating) push, pull or shove to the side the bottle with their hands. Or they may just clamp down on the nipple and stare at you refusing to eat at all. Or they have the weakest, slackest latch and all the milk just dribbles out the side of their mouth - all the while smiling sweetly at you. After the 1 to 2 hours of all of this they are exhausted and fall asleep and then I can dream feed them some more.

3. Sleepy babies that will dream feed a full 5oz or 6oz bottle and burp once and sleep for 4 hours no problem. This has happened maybe 15 times their entire 7 months of life.

Also, to mix it up a bit, throw in the pooping while holding the bottle in their mouth, needing to change the diaper again half way through the feeding. This is fun because all they can do is focus on pooping. They hold the bottle in their mouths and stare at you while they bear down, face turning red, grunting. Eventually there is the tell tail audible and olfactory signs of needing the diaper changed. Something about having a bottle in their mouths makes them want to poop.

The unpredictability of these scenarios really makes going anywhere very difficult. They sleep in bouncy chairs because nothing else is as elevated, even the wedge is not as good. They get prevacid and zantac. They are on fortified Good Start with 4mls of vegetable oil (which is for calories but actually has the added side effect of helping burps come up faster sometimes). We try to feed them at the same time at the 2am and the 6am feedings but those are always the worst and can take upwards of two hours to get through because most of the time is spent calming and consoling and burping and generally just trying to get them to keep the nipple in their mouths. All the other feeds throughout the day I'm lucky enough to have my mother here to help feed one while I feed the other but that does not solve any problems, it just means I'm not dealing with two at the same time.

They are officially being categorized as failure to thrive even though they are gaining some weight. They are still well below the 25% for their height to weight ratio. Makes me feel like a BIG failure myself though I know that is not true. The pediatrician wanted us to get into an outpatient post-NICU growth & nutrition program from Mt. Washington Pediatric Hospital but they wont see us until the boys are a year old and we've met with a pediatric gastrointestinal specialist and tried everything they can think of.

We are meeting with the GI specialist at Johns Hopkins in two weeks (that's the earliest they could see us). What questions should I ask? What other things can you suggest we try to help these babies eat? I am so stressed by all of this all the time, I'm at my breaking point and I just don't know what else to do.

Please help other babies like mine! (repost)

This is National Prematurity Awareness Month.
Did you know that 1 in 8 babies is born too soon?

You can help babies like mine, maybe even your babies, have a better chance of survival. Read our story in my blog starting with the post "Introducing Cameron & Evan". But more importantly, please take just a moment to sign this petition to help babies everywhere!

March of Dimes - Petition for Premature Babies

1. We urge the federal government to increase support for prematurity-related research and data collection as recommended by the Institute of Medicine and the Surgeon General’s Conference on the Prevention of Preterm Birth, to:

1. • (a) identify the causes of premature birth;
   • (b) test strategies for prevention;
   • (c) improve the care, treatment and outcomes of preterm infants;
   • (d) and better define and track the problem of premature birth.
2. 2. We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care.
3. 3. We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines.
4. 4. We call on businesses to create workplaces that support maternal and infant health.

http://www.marchofdimes.com/padpetition/index.aspx?a=1&z=1&c=1

If that link doesn't work here's the TinyURL which you can copy and paste into a new web window:

http://tinyurl.com/47sxq4

Pass this on!!

Mylicon Recall Alert

See link for details:

http://www.mylicon.com/page.jhtml?id=mylicon/press_release.inc

Happy Halloween! We are 7 months old!

It's our favorite holiday of the year! And we are 7 months old!

As time moves on a torch is being passed. The torch of totally awesome Halloween costumes goes from father to sons. In true Drew fashion the boys' very first Halloween costumes are based on something near and dear to their father's heart:

COBRA's evil twin brothers and leaders of the Crimson Guard
Tomax & Xamot!

I had hopes that Drew would pull off a third costume for himself, say Cobra Commander or better yet Destro, but there just wasn't enough time. If these characters still don't ring a bell in your foggy memory, or if you were too old or uncool to know the GI JOE cartoon of the 80's here's a little product placement ad that might jog your memory.
http://www.youtube.com/watch?v=Nnljg4AkQps



We also have a couple of other store bought costumes that we just couldn't resist getting. They are not as cool as the home made Evil Twin Brothers above, but they are cute. It's quite a challenge to find a costume that will fit a preemie. Believe it or not these were the smallest we were able to find.


Some updates on how we are doing at 7 months old:

Today Cameron weighs 11lbs and Evan weighs 9lbs! A far cry from 2lbs 14oz and 1lb 7oz.

They are both growing but are having severe reflux and gas that is causing them immense pain and difficulty eating more than 3 to 5oz each feeding. The normal feeding event takes at least an hour and more than half of that was screaming, arching backs, tears, kicking, spitting up, throwing up, hurling, upchuck, painful burps, and then exhaustion so that they'd fall asleep without caring that they hadn't eaten most of their bottles. They just refuse to eat after a while because it's so painful. And all of this has the effect of preventing them from gaining sufficient amounts of weight, so now they are about 25% below the min weight/height range for babies their age. And we know they will be small kids, it's not like Drew and I are all that tall or large, but they will still be considered on the small side. It's up to us to give them every advantage as early as possible because the older they get the more difficult it will be to impact their healthy weight gain.

We were on 1/2 solutab of Prevacid two times a day which is the maximum dosage we could give them and it wasn't working anymore. Now we've added Zantac 3x/day plus 4ml of vegetable oil in every bottle. Yeah that's right, vegetable oil, and it looks nasty mixed with formula. But there is a nice side effect in that the vegetable oil makes burping much, much, much easier and less time consuming.

As of two days ago we went from barely being able to eat 2.5oz most feedings to now eating 5oz every feeding no problem! This is just one more step towards healthy Sleeping Through The Night. We're still a ways off, but I can see it at the next stop on this crazy train. Please oh please oh please.... I haven't slept through the night uninterrupted in over 10 months (that's counting at least two months prior to birth of me getting up every hour to pee or just laying awake in pregnant discomfort.)

Cameron is officially off the oxygen and the medical supply company will be here on Friday to pick up all of the the equipment. He is a healthy normal preemie with no greater risk for asthma or other breathing problems than his brother and should have no lasting effects from his extra time on oxygen.

Developmentally Cameron has had the most improvement and is starting to perform some 6 month old abilities. He holds his head up very well and is almost ready to start rice cereal. We can even hold Cameron up in the air like Super Baby with his feet sticking straight back. He can grasp things, take a toy from my hand, hold it with both hands and can even get it to his mouth though not with much accuracy. He is vocal but only "talks" to his fish on his swing, not so much to Mommy & Daddy yet.

Evan has a very long road to go developmentally and we are going to insist that Infants & Toddlers Early Intervention program adds Occupational Therapy to the Physical Therapy. He is very adamant about turning his head to the right and fights not to turn it to the left. Guess he's got to work on his "Magnum" look because he's got "Blue Steel" down cold.

Evan can hold his head up but requires a lot more propping and will only do it when forced to try. And he will absolutely NOT lift his head for tummy time. He is grasping things as long as they are slim like a skinny rattle or a thin strip of fabric but it's still very difficult. We have witnessed him reach up over his head to swat at his car seat toy or the parrot on his bouncy chair, something Cameron hasn't done yet. Evan not only talks to Mom & Dad and Granny Cathy, and his stuffed dogs Fritz & Helga, but he is also exploring different sounds with his voice while chatting with the fish on the swing. Often it sounds quite disturbing but he's having a great conversation, we just have no idea what the topic is.

Both boys love to kick and the best toy lately has been the piano kick plate crib toy I got on consignment for $2.5o. Neither baby can roll over or prop their chest up in tummy time, but Cameron can lift his head pretty well when he's mad. Both can sit in a Bumbo or Bebe Pod seat, and this week we introduced them to their exersaucer. This is a big hit and Cameron has developed an immediate interest in the sun and globe toys and is already reaching to grasp them. Evan is just thrilled that he's sitting without being held and really enjoys looking at all the new shapes and colors. I also feel we are on the verge of a gross motor skill break through in that the guys have figured out how to lift their legs while on their backs and rock them side to side. The next step is to flop over on to their bellies.

Tomorrow they get their first RSV Vaccine shots and their second round of flu shots. We'll give them one RSV shot a month until April when the season is over. We will be in hybernation until then. :-(



Happy Halloween!

Yes, yes, I know, but did they have to make a TV show to remind me??

Twenty-five was a great year. Probably my favorite. I had a great new grown up job paying me more money than I'd ever had, a new car, a new townhouse with great roommates, a couple of boyfriends, long-long time best friends that were ready to party any time, out to bars on weeknights, dance clubs on weekends, I had fun and spent lots of money on silly things. I was Sex in the City - Baltimore Style. And then I dreaded turning thirty because that's what I thought everyone did, and it turned out to be a fairly pleasant year though going out to bars was not on my top three list of things to do and skiing started to take a less than ideal ranking in my vacation plans because recovery from such activities was taking longer and usually involved more pain. Thirty-three is when things start going south a little faster. Eyes got worse, grey hair was easier to find, you start paying attention to those stupid wrinkle cream adds that you know really don't work because you know there's no such thing as "regenerist pearl mushroom fungi oils" but you want to try them anyway.

But as this past year has progressed I've been consistently reminded that time is ticking. Things are growing, moving on, getting advanced, not what they once were. I had gotten what I wished for. It started with the whole getting pregnant phase at thirty-four. At thirty-four they start treating you like you are of advanced maternal age and your odds of complexities and chances go through the roof by the time you have your 35th birthday. This means more tests, more monitoring... Oh smack! You're having twins! And they are having complications... Yadda yadda yadda... Well, you know the rest of that story.

While you are pregnant and after you have a baby, especially multiples, I really think your body goes into aging overdrive and there are many other facets to life that you now deal with that certainly I never thought of. Carpel tunnel syndrome in both wrists, bad knees from stooping, bad back, stiff and clicky joints, much more gray hair and where the hell did ALL of those wrinkles come from???, and as I've said before the increased likely hood that an organ may start to fail.

I had my gallbladder removed on Wednesday. It was supposed to be outpatient surgery done laproscopically. On the table at 2pm, home by 7pm. But it turned into an overnight stay because I had such a difficult time waking up from the anesthesia and then the amount of IV pain meds it took to ease the pain of the four incisions. I wish I could say that I had the best sleep since the last six months but they wake you up every 30 min until you've been there 4 hours and then they wake you up every 2 hours after that so really there was no rest.

And I wish I could say that I immediately felt better having had the gallbladder out but I actually have felt worse for the last four days. Today has been the first day where I've been able to eat anything without feeling like I needed to pay my respects to the porcelain god. The pain meds make me even more queasy, so I've stopped taking them and just deal with the discomfort. Can't really throw up too well while holding a squirming baby.

And I can't say that I was really thrilled with how everything went because the whole process is just like going to Jiffy Lube. You show up, they drive you up to the counter where you turn in your photo ID and insurance cards, pull you into the mechanic's prep bay to gear you up / strip you down and take your vitals, the docs give you the "ready, fire, aim" welcome to our fun house speech, then pump you full of fast acting memory erasers (and boy do I mean fast!! I didn't even get to take my glasses off my head), and promptly wheel you in for the slice n' dice. Afterward you wake up in a big room full of other equally miserably inclined patients with a nurse who has no information on how your surgery went or if you will be seeing your doctor at any time during the remainder of your stay. I never did see him after everything was done nor did he make any attempt to contact my husband to say everything was normal. I guess it's not really necessary, but it's nice to have a follow up conversation with the person whom you've just allowed to poke around in your gizzard and take a body part for his collection.

At home it's the typical discomfort and pill popping, trying to think of something bland to eat and still thinking of sneaking the slice of pizza that I'll pay for later on. There are four band-aids hiding steri-strips that hold my stitches together. The band-aids are supposed to come right off after two days and the steri-strips in about a week to ten days once the stitches dissolve in the shower. Instead the band-aids are stuck directly to the steri-strips which are holding my stitches together so when painfully peeling them off my steri-strips come off too. I guess I'll just cut the parts that aren't sticking and keep the parts that are sticking where they belong. And it feels very much like Mike Tyson had a practice session on my right side from my shoulder to my hip. And anyone who lies to you and says that it's easier than a c-section is delusional and has forgotten that they most likely had an epidural before their c-section and those last 24 to 72 hours after your surgery, then pain is masked by the IV meds and pills they give you in recovery. The epidural makes a BIG DIFFERENCE!!! After my c-section I was hobbling around from my room to the NICU in 4 hours. This time I didn't get up for 8 hours.

But it's finally done. I am less one organ.

Fare well to my delicious side of fries with everything. And trusty, reliable good friend KFC. Oh, and my always-desired-on-Sunday Chick-fil-A 8 peice chicken nuggets meal with ranch dressing. (Okay fine, I really get the 12 piece.) So long onion rings and Whisky River BBQ Burgers from Red Robin. I will only see you all once in a blue moon when my resolve and memory cave and I can't fight the desire to have you one more juicy time and I convince myself that it's worth the aftermath of gas and discomfort later.

Insult to Injury... While watching TV in my hospital bed I saw an ad for the new show "Life on Mars". WTF??? Is the year 1973 supposed to be a really long time ago? Why couldn't they have picked 1943 or 1982? Is thirty-five years such a far of time that we need to bring the retro back and splash it about prime viewing time so that I can't forget that I'm just that much older? What fortuitous timing that they should air this new show right NOW!!

I know I'm not 40 or 45 or 50 but I am hot on your heals. And Hollywood should know that I don't appreciate their rubbing in their youth and vitality. Not this year. Can they try it next season, when I'll be 36 and maybe feel more blase about the whole age thing?
At least wait until I can fit back into my pre-pregnancy jeans without a layer of binding assistance.

Wanna see what 28weekers look like?

Here are a whole bunch of photos of the boys since birth. I separated them one for Cameron and one for Evan. They are their own people so they should have their own slide show. I love to go from the first few photos to the most recent ones because I can hardly believe they started out the way they did. The early photos of the boys with their tubes and wires and red puffy skin still gives me the shakes. It's been such a loooong six months but I would do it again and again.

Cameron:



Evan:

Please help babies like mine...

You can help babies like mine, maybe even your babies, have a better chance of survival. Read our story in my blog starting with the post "Introducing Cameron & Evan". But more importantly, please take just a moment to sign this petition to help babies everywhere!

March of Dimes - Petition for Premature Babies

1. We urge the federal government to increase support for prematurity-related research and data collection as recommended by the Institute of Medicine and the Surgeon General’s Conference on the Prevention of Preterm Birth, to:

1. • (a) identify the causes of premature birth;
   • (b) test strategies for prevention;
   • (c) improve the care, treatment and outcomes of preterm infants;
   • (d) and better define and track the problem of premature birth.
2. 2. We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care.
3. 3. We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines.
4. 4. We call on businesses to create workplaces that support maternal and infant health.

http://www.marchofdimes.com/padpetition/index.aspx?a=1&z=1&c=1

If that link doesn't work here's the TinyURL which you can copy and paste into a new web window:

http://tinyurl.com/47sxq4

Pass this on!!

Reaching & Grabbing, plus update on our Urologist visit

As I sit here typing I am watching Cameron get very frustrated at reaching and grabbing for the toys I've placed in front of him in his swing. But the key here is that HE's DOING IT!!! Cameron is reaching out his hand towards a specific item (his monkey rattle from his play gym), opening the palm of his hand, and grasping the monkey's leg. Then he pulls it towards him but the monkey is to big for him to do more than that so he gets upset. He's tired and ready for a nap. But I couldn't be more excited!

Evan is in his bouncey swatting at the bird and being amazed at how the bird spins around on its bar. He is not as frustrated as Cameron and is seemingly more patient than tired Cameron. Both of these things are big steps and make me smile all over.

This morning we went to see the pediatric urologist about the boys hernias, Evan's hypospadius and penile chordee, and discuss when to fix and have them circumsized. Circumcision is not what we had planned but because of Evan's condition and since we're going in to fix their hernias we will be going ahead with the circumcisions. But none of this can happen until the boys are 9mos and weigh 15lbs. They can and have done these proceedures on smaller younger babies but out of consideration for their prematurity, Cameron's recent weaning off of oxygen, and their tiny sizes for 6 month olds (actual age) they prefer as a general rule to wait until the babies are much bigger.

This is just fine with me, I am not thrilled about having any surgery done on my guys but I'll be glad it's done with and they are fully healed. I'm not going to go into our decisions about circumcision and the question of to do it or not to do it. It's a personal thing for every family, though I can't imagine anyone chosing to have one twin circ'ed and not the other.

In any case, we go back in January for a follow up to see if the hernias still have not closed (keep your fingers crossed they don't become impacted between now and then so that we don't need to have any emergency surgeries) and make sure everyone has gained enough weight. It will be an outpatient surgery and they should come home with us the same day.

Uh oh, Evan's had enough of his bouncy chair. Time to go for a nap.

We're 6 Months Old Today!!

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?

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.

Sincerely,
Laura
Proud Mommy to two very healthy baby boys!

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!

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!