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Friday, June 26, 2009

Welcome to Baby Sasha Victoria!



After three months of long and patient bed rest my best friend Mrs. A finally made it to 38weeks 4days to deliver a healthy baby girl named Sasha Victoria! It was a quick and easy delivery and Mom, Baby, Dad, and Big Sister Lila are all doing great. I have not had the chance to meet Baby Sasha in person yet, but can't wait to meet her and give her some good snuggling. Auntie Kelly was able to see her tonight and says that Sasha looks just like Mom and is just as sweet as Dad. No surprises there, since big sister Lila is just as sweet and beautiful. Congratulations to the family and Welcome to Sasha Victoria! We love you all!

Tuesday, June 23, 2009

Um... Say what?!!?!!


Cameron and Evan are officially overweight.

Yes, that's right, they are both too fat for their weight to height ratio and age! They are both in the 90th percentile and gaining too much weight too fast. The GI and the nutritionist said they are considered very large, especially Cameron, who's on the verge of being too fat/obese. Can you believe this??!!?!!!

The boys have had the new G tubes for almost three weeks now and so far so good. They still vomit between two and six times a day, but it's definitely all reflux related and we know generally about when they will vomit because it's usually around medicines, eating by mouth, early mornings when reflux is at its worst for most people. Only Cameron has spontaneously vomited in his sleep once and it was only formula and he rolled right over to the other side and went back to sleep before I could even clean him up. It happened so fast that it was a good thing I happened to be standing right there when it happened.

Cameron is 25lbs 8oz at 29.25 inches long and Evan is 21lbs 2oz at 27.25inches long and continuing to grow on their own curves. Both gain about 1.5oz a day. So we are going from a 4hour break in feeds to a 6hour break in feeds and eventually the plan is to get to fit in 3 bolus feeds a day with continuous pump feeds overnight. Apparently this kind of growth this fast (over the last 4.5 mos they've gained about 12lbs each) is dangerous for their livers and other organs if it goes unchecked.

We've also increased their Prevacid to 3/4 of a 15mg solutab two times a day. Hopefully that will help the reflux that seems to have ramped up these last three weeks. Thankfully though it seems (at least for now) that the spontaneous vomiting in their sleep has stopped, but we're not positive about that just yet.

As a side note the GI was telling us that BeachNut is a better baby food product because their rice cereal manufacturing process is better maintained/set up to prevent cross-contamination of wheat products for allergy concerns, and over all their pureed foods generally have a higher caloric content which is more bang for your buck if you buy baby food. Just an FYI for those who are trying to ramp up their baby's weight...

It is surreal to think that back in January we were terrified that the boys were losing weight, refusing to eat, and had come to a complete stand still with their development so that at 9mos of age they couldn't do things that 5mos old kids could do. And here were are six months later and now we're on the opposite end of the spectrum (well except for the fact that they still refuse to eat) and developmentally speaking they are skyrocketing with their abilities and interests. But this is a problem that is easily maintained because we can control what they get with the feeding pumps.

The best development from having the new MIC-key Button G tube is that the tube is really the size of a button and much easier to maintain. The second best thing is that the boys feel so much better with these new tubes because it is less than two inches long as opposed to the 12 inches of the GJ tubes.

They are like different children, more expressive, more tolerant, more curious and willing to do things they don't normally let us make them do. Since we got the new tubes Evan has started tolerating being on his belly, learning to push up on his arms, mastering rolling over onto his back, and even sitting in the crawl position for a few moments without complaint. Evan has even learned to shake his head side to side but I don't think he's realized that means "no" just yet. Cameron has started doing all the same things but will now also voluntarily roll on to his belly and roll from one end of the play mat to the other for toys. He's also learned to get into the crawl position and scoot backwards as well as sit on a scooter and push backwards with his feet. Both boys are, often at the same time, using me as a jungle gym ALL.THE.TIME. to lean into my lap and pull them selves up to a standing position and can stand for a few seconds on their own. Cameron can pull himself up to a stand by grabbing on to the edge of his exersaucer too. Both can clap when asked to, but rarely do so on command, and both love to play the game peek-a-boo and will play it with each other giggling and laughing and screaching.

The feeding by mouth isn't going great, but they now love to drink water out of a sippy cup so that's a big step. All in all it has been a good thing to move to the G tubes. The next step is to do larger cluster feedings and see how they tolerate that because it will stretch their stomachs to allow for more volume tolerance. This is the first really slow step in the long process to get them to eating solids. The step after the bolus feedings is convincing them to eat everything by mouth, and that is really SLOW.

As an added activity to our Monday OT session, Tuesday Feeding Clinic, Wednesday PT session, Thursday story time, and Friday playdates we are going to Rollie Pollies for a real work out. We had our second session this past Monday night and it went better than even the first session and that one was awesome. Part of the reason the second session was better is that our good friend Brendan and his mom Katie were there to tumble and roll and have a good time. Warning to those of you who have not experienced a program like this: it is not for the out of shape! Your arms and back and legs really get a work out, mean while the baby is having a blast. The funniest part is where Drew got stuck with Evan in the giant foam ball pit. Hopefully next week we'll squeeze in some pics from class.

Now for more cuteness! Please note the rolls of fat at the wrists and thighs! LOVE IT!

Cameron and his many chins.


Cameron playing Babushka - aka peek-a-boo, the greatest game ever invented!


Evan playing Babushka/Peek-a-Boo. This is as close to having a girl as Mommy is going to get!


Story time with Daddy


Evan on his new Firetruck. Thanks Kate for the great toy. The boys love this thing!


"I see a firetruck. A big red shiny firetruck. I see a firetruck coming down the lane. And there's a noisy siren wailing on that truck! La la la laaaaa..."


Teamwork!


Our new fascination with anything that has wheels makes Poppop proud!

Tuesday, June 16, 2009

Doughnuts


A good friend of mine found this article written about a food critic who also has a child who will not eat. She is right. Parenting is humbling, and it is not just a cute phrase people say, but as with many things in life to really understand it you have to live through it. I do understand it. And any port in the storm is better than no port. *sigh*

http://www.minnesotamonthly.com/media/Minnesota-Monthly/June-2009/The-Doughnut-Gatherer/index.php?cparticle=2&siarticle=1#artanc

Thank god for so many other lost ships at sea! Thank you TriciaJoy for finding this article.

Sunday, June 14, 2009

"Growing by 2 Feet"

Our extended family is about to grow by two more feet! Soon Evan will no longer have the distinction of being the youngest in the family as his cousin Baby Dillan Oliver is on his way, hopefully to be here in just six short weeks, to take that special coveted title. Dillan will be the magical 5th grandchild for my in-laws who are absolutely thrilled to have so many little ones to spoil.

Today we celebrated his mother-to-be, Valerie's most excellent baby baking skillz of Dillan at a small cozy shower in their honor. It is so nice to see someone go through a pregnancy with practically no complications or illnesses, not even morning sickness. Val is doing great, holding up excellently, and is very ready in almost every way for her new son Dillan to make his entrance to the world in a month and a half (possibly less, but you all know we hope not too soon).

The nesting is in full swing and dad-to-be Mike is working very hard to make sure that Dillan's room is ready for him as soon as possible. Both parents are still pretty calm, all be it very excited for their first new bundle of joy to arrive and taking on the daunting task of remodeling the second floor of their home to have the perfect nursery. Well, actually I don't think the official nervousness (ie. you'll recall that moment just before you had your baby(ies) where you realized in complete terror, that moment when "holy shit I'm about to have a kid, he's coming and there isn't a damn thing I can do about it now and nothing will ever be the same" hits you) and overwhelming panic has set in yet for either parent, but that special moment is usually reserved for the birthday. You can see more about their remodeling project on Val's blog Saturn Girl's New Life, the link is in my blog roll.

They have taken on the challenge of adding a new a/c and furnace, replacing the electrical panel and the entire bathroom, in addition to adding a dividing wall and all new drywall to create Dillan's room. It is quite a project, especially for a couple who work opposite schedules. But they are making progress and it is starting to all come together come hell or high water or well... the baby. So far the bathtub and tile are in and it looks fabulous. I know once they get the walls up in Dillan's room and paint it the Finding Nemo theme is going to be over the top way cool.

It's going to be so fun having three little ones running and crawling around at Thanksgiving and Christmas time and all the family get-togethers. It will be great to have other kids playing and screeching and running about, causing havoc and running to Poppop and Mommom to ask for things that their parents have already said no to. Mommom and Poppop maybe need to consider expanding their house by at least 6 feet to make room for so many grandkids. Either that or the poor artificial Christmas tree they have is going to have to get smaller to make more room for all the presents.

To Valerie, congratulations on a wonderful healthy pregnancy and best wishes for a easy problem free delivery. You are doing a great job! To Mike, congratulations on becoming a dad, we know you will be an excellent one, and you too are doing a really great job. And most of all to Dillan, on your very first post of your own on Taylo2Babies, we are so excited and looking forward to many many many more posts about you and your wonderful antics growing up and hanging out with Timmy, Lucy, Cameron and Evan. They are all looking forward to having their new baby cousin arrive. I think my camera will have a melt down from all the cuteness about to ensue.

With much love,
Laura & Drew

Here are some shots from today's festivities:

Valerie's own Cake Wreck - Poor penmanship...


The Diaper Cake - Finding Nemo is the nursery theme if you haven't guessed. And what good Aunt of preemies wouldn't have her diaper cake accessorized with handy "Please wash your hands before touching mine" car seat stroller sign? My favorite baby thing ever!


Variation on the Baby Food Taste Testing Game: Serve baby food samples in shot glasses and have everyone guess the kind of baby food in each. Why shot glasses? Because it's often that glasses like those get the guest of honor in the condition she's in so why not use them now? You can use Gerber rubber coated spoons to have people taste the food too. Better yet, video people as they eat the food to capture their expressions!


video

And here is the guest(s??) of honor!


Special thank you goes out to Debbie and Lara for helping me pull together this baby shower, as I don't know if I could have done it with out you both!

Sunday, June 07, 2009

A Few Great Things That Go Great Together!

What a wonderful weekend it's been! So many things have happened that I've had a difficult time trying to pick a title for today's post. Eureka! The great and almighty CLICK! Down the hatch? In the end, there were so many things I just went with an all purpose cover title. Finally the clouds have parted and the sun has come out and suddenly what everyone has been promising seems to have finally happened.

As a mom of preemies you hear all the time that "it" will happen, they will "get it", and "then one day it just clicks". These are difficult things to hear when you talk to more experienced moms and doctors and therapists. You hear it so much you swear they are all smoking crack because this is clearly NEVER going to happen. The opening of the hand to grasp something, the lifting of the arm to swat, holding up a miniature oversize head on tiny weak neck, the pushing up with the arms, the rolling from belly to back, sitting unassisted... I could go on and on, but if you've followed my blog you've already heard my woes on these issues.

But the moral of the story is that it does "just click". And to truly understand what that really means for each worried mother is a continuous process. It's not that this magical "click" is so sudden that you don't see it coming. On the contrary, you are looking so hard for it combined with the agony of realizing and constantly being painfully aware that your little one is not progressing even for their adjusted age with all the hard work and available services to help. Further more (and this is the worst) that it has taken so long for them to feel good in order to WANT TO EVEN TRY NEW THINGS has been the saddest problem all along.

As I had previously posted on Wednesday the boys got their very first colds and had their GJ feeding tubes replaced with standard Mic-Key Button G tubes. It was painful and scary for both of them and it's been a very rough week during the night because they can't sleep with the runny noses and bad coughs.

But Friday during our PT session Cameron started to not only willingly roll over on to his belly, but push and pull his way on to my lap so that he could drag his body up in order to reach the exersacer play table. And to add the icing on his individual cupcake he has figured out how to balance on his feet and stand without holding on to anything for a few seconds, then put his arms out and grab stuff to hold on to when he does finally lose his balance. Not only that, but he can also go from sitting on his Fisher Price Song & Story Learning Chair and lift himself by his knees only and stand while lightly holding onto something in front of him. And he is also showing signs of wanting to crawl a little bit because when we put him in the crawl position he now stays there and rocks back and forth without complaint or trying to roll over.

video

Not to be out done by his older brother Evan has started trying to do the EXACT same maneuvers but to a much weaker extent for now because his muscle tone is not as solid as Cameron's yet. You can see in the video above that he's doing a lot of standing with minimal assistance from Daddy's hands working as his own as-needed chair. Also, since he doesn't like people to touch his hands or to hold on to things and has a weak hand grip the balance thing is an issue and he's slowly learning that it's not an option to put your hands down, sometimes you have to do it. Tummy time has officially and finally become a fun thing for them and as awkward and back breaking as it is to be their own personal jungle gym, I am thrilled to have these two monkeys pulling up on me all day long!

And really I owe it all to the other babies that we've had the pleasure of meeting these last two weeks. I think that the boys were able to finally see what they could be doing and get some ideas from other kids because ever since then the boys have been really adventurous.

Another wonderful thing, and music to my own ears, is that Evan has very clearly said in front of me, my husband, my mother, and the physical therapist the sounds "Mamama" and he was very pointedly looking at me or looking around for me. This is our very first intentional and directed verbal communication and he's right on track with that for his adjusted age of 11 months.

On Saturday I was able to sleep for 6 whole hours for the very first time on over a year and a half all thanks to my wonderful husband, my mom, and a full dose of Nyquil to help with the cold the boys gave me. Meanwhile, baby gymnastics continued and at lunch time the boys had worked up quite an appetite and impressed me again. Lately Cameron has not wanted to eat at all and only wanted water. Drinking water from a spoon or from a little clear plastic bowl has been an enormous success for them lately and I wanted to expand on that obsessive desire for water.

video

Previously I had put the water in a Dr. Brown's bottle that they used to eat formula out of, and had mild to disastrous results. This time I put it in a clear sippy cub with the inside valve removed so that some water will trickle out slowly but easily when tipped over. (Yes I know that this means we'll have a flood of water everywhere... but you do whatever it takes, right?) Then I pretended during their meal to drink from the sippy cup. Monkey see, Monkey do, my Monkeys love to copy too! They seemed to get the idea that water came out of the cup when they put the tip in their mouth and the natural instinct to lightly suck came back to them and they were able to drink small doses of water from the cup as I held it. They loved it and kept leaning their heads as close to the sippy cup as they could. I had been told they would never drink from a bottle again, and that very well seems true. I had also been told that they may not even drink from a sippy cup if they have forgotten their suck reflex, so we are still golden because this was a big hit for them.


Yet another beautiful thing is that all kids love a good cookie, and mine are no exception. We have been giving them a LU Brand (a European brand) cookie called Le Petit Beurre. This is a mildly sweet butter cookie that when wet gets very mushy quickly and dissolves in the mouth in small amounts, much like graham crackers do. My mother used to give these to me when I was little too. The boys have started putting these in their mouths and use their little pair of teeth each to gum and scrape of little bits of this cookie. If a piece breaks off or is too much for them texture wise, they let me pull it out with my finger or they lean towards the water cup and sip a little water, which then dissolves the cookie crumbs quickly and they swallow it. They don't really eat much, just crumbs, and you can see in the pictures they don't look to excited about it, but the point in this exercise is that they are putting it in their mouths on their own and doing so repeatedly and no one is gagging and vomiting from the texture or taste. The volume consumed will come with time and help from the feeding clinic.




















On Sunday Cameron was really showing off and rolled over three or four times completely from one end of his play mat area all the way over to the other side to get to a toy, his feeding tube wrapped around him twice like a spinning top. Evan continued to practice his climbing on Daddy.

And best of all on Sunday was that I was able to take the day and spend it with my BFF to celebrate her parole day from 13 long weeks of strict bedrest. I'm so proud of her for being such a trouper and keeping her sanity for the last three months, and so very happy that Baby P is going to go full term. We celebrated by going out to have lunch and casually stroll around the local mall and enjoy some ice cream in the shade on a perfect warm summer day. One of the best days I've had in a long time. A perfect way to end a wonderful weekend.

Wednesday, June 03, 2009

Jumping in with all four feet

Today we had the GI take the boys GJ feeding tubes out and replace it with the basic, low profile McKey Button G tube. It was actually quite painful and scary for them, especially for Cameron, and also complicated by their having woken up with their first official colds complete with sniffles, sneezes, runny noses and coughs. We've been busy with our social calendar and meeting lots of new people this week, so it seems that we've hit our quota on good luck with missing colds. As for the feeding tubes, the boys had the GJ intestinal feeding tubes for four months and they should have been replaced around 3mos, so it was really disgusting to see. We've been lucky so far but it's now the end of dodging bullets for now.

Anyway, the crew is home now and in bed by 6pm so that tells you how exhausted they are from their ordeal. I just wish they would stop waking up from the runny noses and nightmares. Someone's always screaming and waking up every 10 minutes it seems.

The reason we went to the G tube is because we've been feeding them by the G port on their GJ feeding tubes for the last 3 weeks with equal success as compared to feeding them on the J part of the tube. And they are both waxing and waning on they spontaneous vomit of bile from the intestine. Our hope is that, by removing the J portion of the tube which goes through the pylorus sphincter creating a necessary obstruction, the sphincter will close more and less bile with come through as well as removal of the tube decreasing the gag reflex. The doctors can't figure out why they sometimes randomly just throw up bile even while we are feeding them formula in the stomach, as if the bile is somehow bypassing the stomach on its way up.

IF this works then in the next two weeks I will start doing very small bolus feeds and keep the boys off of their pumps more during the day, but continue with the over night continuous pump feedings. The idea is to continue to give them "meals" all at once instead of over a slow drip period of time, thus stretching out the stomach and encouraging them to tolerate more volume. This way maybe we can get them to eat more by mouth and one day have the ultimate graduation party to celebrate being completely off the feeding pump.

I, being the honest and direct negative Nelly, have my doubts that this idea of switching to the G tube will work to alleviate at least the spontaneous vomiting, and still certainly feel their refulx is bad and the meds they are on are not working but the GI still refuses to increase the dosage of the Prevacid. I am afraid we will find we have to go straight back the GJ tubes, which is a nightmare to have replaced, and I don't feel convinced they can handle much volume in G tube bolus feeds but I guess there's only one way to really know if we're ready.

For comparison of the convenience of the two kinds of tubes here's a pic of the boys just after they had the GJ intestinal tubes put in. You'll notice the big plastic disk at the stoma site from the belly with a long tube ending in three large prongs or ports. This is a tricky thing to keep a baby, and his brother, from giving a good sturdy yank on so one must always be on their toes around these guys.

Here's a pic of Evan's new McKey Button G Tube. Cameron was not feeling up for the photo shoot. The red ring around the tube on his skin is the surgical antiseptic they used so don't worry that its bloody, it isn't.



In other news, we have officially retired our Graco SnugRide infant carriers. We will miss them soooo much! As heavy as it was to lug the boys in them, it was great because we didn't have to wake them and they had a great canopy to hide from the world under, as well as a totally awesome place to hang our favorite "Please Wahs Your Hands Before Washing Mine" freaky old lady who likes to touch babies without asking protection barrier sign. We went with the Recarro convertible seats and boy is it a pain to get them in and out of, not because the seats are bad - they're awesome seats. It's just that I much prefer tossing the baby bucket in the base or onto the stroller and be done with it. Now we have to make sure the boys are properly dressed (no more blankets and hats only), and lug them out to the car, lift them up into a seat and contort them into the straps from an angle out side the car door. It's a pain. But they will have these seats until they are either 70lbs and/or 8 years old so hopefully soon they'll figure out how to climb into them and buckle up on their own really soon.

Here's the first pic of the boys in their Graco SnugRide seats. Evan weighs 3 lbs 4oz in this pic, and Cameron was a whopping 6lbs 7oz. It is not hard for me to believe they were even smaller than this, I still have dreams about it like it is all still happening.


But it helps me to look at the pictures and see that they have come so far. Here's the boys as of about two weeks ago, Evan weighing in at 18.5 lbs and 27 inches, and Cameron at 22 lbs and 29 inches (the maximum weight and length limits for these chairs).



And here we are trying out our new big boy seats in the living room!



And a couple of random shots from this week. (My mother is standing just out of the shot so please don't think I'd let Cam stand like that with the crib side down unattended.)





Does anyone else get the feeling I'll be rearranging the furniture in this room one day???

Monday, June 01, 2009

14months old


This has been a great weekend. We learned this weekend that unfortunately the boys did not win or even place in the Little Angels 2010 calendar, but we did help to raise over $25,000 for our wonderful NICU at Anne Arundel Medical Center. Thanks again and again and again to everyone who voted/donated. I will post when the published calendar is available for sale. Again, all proceeds from the calendar also go to the NICU.

Friday night my hubby and I put the boys down for bed and sneaked out to see Star Trek. It was our first time out together without babies in tow. And our first movie in well over a year, which is saying something since we both love movies and met 15 years ago working in a movie theatre.

Saturday we went to our friends housewarming and had a nice time hanging out with everyone, especially our new little friend Aubrey who was super sweet and demonstrated for the boys the proper way to crawl. They also had a great time and were not at all afraid of little puppy Bella the Pug, who was all over them and really sweet and tolerant of the boys grabbing her and loving her.

Sunday was the top of all our Adventures in Preemie Outings because it was a big Preemie get together with our friends (well, the ones that live local, though we desperately are wishing for a Disney Preemie convention) from the Preemie board on TheBump.com. It was perfect weather and things went really well. It was my first play date taking the boys all by my self and I loved it. Even though both wanted my undivided attention the majority of the time. We got to hang out with our new friends Marino, Branden, and Simon. For us moms it felt like we'd known each other forever, and we're already working on making this a monthly get together. I didn't get many picutres because, well, my hands were full, but K (Branden's awesome Mom and practically our neighbor too) was sweet and took this picture of me with the boys. It's only the third picture of me alone with the boys ever. I am going to have to change that so it happens more often.

Today, Monday, the boys had an evaluation with our Infants & Toddlers Occupational Therapist (OT) and a Teacher as well. This was to re-evaluate their skills and development from our initial Early Intervention evaluation last July '08. They are both still behind even for their adjusted age but the level of "behind-ness" is spread all over from 6mos to 12mos adjusted ages because they do some things and not others, but all in all they are doing much better and remarkably so since they have been fed through feeding tubes. The big news is that we are no longer worried about their fine motor skills, though plan on continuing therapy because they are not on target for their actual age of 14 months old. Evan is performing in this area at a 12mos age and Cameron is only a month behind at 11mos, but that's only because he didn't want to show off.

The most wonderful thing about this evaluation is that there were absolutely no meltdowns from either baby, and Evan will let our OT handle and manipulate his body with minimal fussing. This is light years away in improvement from even four months ago, let alone a year ago. We are also continuing with PT for their gross motor skills but the PT feels strongly that Cameron will be walking by the end of summer and Evan is going to be right behind him. Monkey see, Monkey do, Mommy Monkey jump up and down with tears of joy!

Here's some more pics of my Little Angels.



















Cam! Check this out! The duck has a hole in his belly just like we do! Wonder what happens when we HIS pull the plug out?


Best Friends Forever!


Cameron standing on his own for the first time! Look Ma! No hands!


Making friends with Ducky.