Monday, March 30, 2009

We are ONE!

Happy Birthday Cameron! Happy Birthday Evan!

We have so much to celebrate today. I can't believe it's been a year. Such a long and tumultuous year. I've never been so elated, excited, terrified in my life as I have been since I found out we were having both of you. To become responsible for your lives, to help develop the kind of people you will become is a weighty thing. Two boys! I can remember my first thought was that the ultrasound technician was going along with Daddy's joke about wanting a television show about us having nine babies at once. "Funny you should joke like that, because here's the other one!" is what she said.

My second thought after the doctor confirmed the diagnosis was, "How do you breast feed two babies at the same time?" and then real panic set in. Wait, two babies? No joke? We sat in the car for an hour in shock after that doctors appointment and the only words your father and I could say were, "Twins. We're having twins." We both called out of work because we were too much in shock. We walked around the mall the whole day in a daze, seeing twins everywhere! All of the sudden everywhere we looked it seemed twins were coming out of the woodwork. For months and months all we could say when we looked at each other was, "Twins?" and all we saw everywhere we went were twins. And even after you were born, even while in the NICU, and even today your father and I still look at each other in amazement that we have you both and how amazing you both are in your own ways. In a million years your father and I would never have thought we'd be lucky enough to have both of you.

I am overcome with emotions so strong it would take down a mountain. It has been a long, wonderful and difficult year for us all and look how big you are now! I look at the pictures of you from the beginning of your lives and marvel at how strong and sweet and lovely you are. You amaze me every day. You have changed my life in beautiful ways that I never would have imagined in my wildest dreams.

Cameron, my oldest, my comedic little ham, my flirt. We had been waiting to name you for almost fourteen years. You look so much like your father, you even have that mischievous glint in your eyes. But you have my ears, and I'm sorry for that. You were caught off guard being brought into this world early and you have made lemonade out of life's lemons. I think this will always be your talent. You crack me up all the time, just like your father. You pose for the camera like a professional. You shock me at how fast you can catch up when you are finally feeling your best. You can finally roll from belly to back no problem, and I suspect if you just had the right incentive you can go from back to belly, and believe me I'm looking for it. I know that you are on the verge of putting yourself in a crawl position and standing up on your own is soon to follow. You are a tiny bit of a mama's boy right now and I love it when you get upset because I leave your sight. I love it when you bend at the hips, requiring me to hold you up so that you can poke at things with just your little pointer finger on the floor. I love that you have one single strand of hair on the top of your head that is longer than any other. I love how you sing your self to sleep in my arms. I love the little open mouth sloppy, drooling vampire kisses you give only to me on my neck. When you grab on to me tight with both your fat little baby hands it makes me feel on top of the world - even when you pinch so hard. I love that you snuggle with me and how you like to bounce in my arms. I love that you are fascinated with the dogs because they, especially Chewie, are very interested in you. You laugh with pure glee when they walk by, yawn, eat, wag their tails and lick your fingers. You have stranger danger but given the right introduction you have everyone wrapped around your little finger as soon as you smile and bat those beautiful blue eyes.

Evan, my youngest, my serious thinker, my surprise baby. You are the extra bonus. My lottery prize. You look more like me and are more serious like me, but I suspect your personality will grow to be more like your fathers, cynical and quick witted with a wicked sense of timing and humor. You are so sweet and super snugly and have wise old eyes that tell me you actually do know the secrets to life. You must because you are here, you were ready to come into this world and are living it up. The doctor said you amazed him, that you were not what he expected because you just kept beating the odds over and over, and he was certain you would be a NICU star. He was so right because you really excelled at all the things you needed to do to come home so quickly. You can do things that your older and bigger brother can't do, like find your pacifier on your own, turn it around the right way and put it in your mouth. And if you can't find the pacifier you can suck your thumb, often both thumbs at the same time. That cracks me up, even at three in the morning when you're sound asleep. You are the first one to figure out the game peek-a-boo. You can finally sit up with your arms propping you up in a tripod position and you have really taken quickly to eating by spoon. You kick like a soccer player or an Olympic swimmer and you do it so much without stopping to rest that I'm certain you will be an athlete. You finally can roll from belly to back and are getting used to using your arms and legs with more force. I love how you can smile and cry at the same time. I love how you observe everything going on in the room and snuggle in close. I love how all your clues that you are sleepy are so easy to read, you always know exactly what you want. I love how you can calm down when I pick you up and whisper in your ear the story Bear Snores On. I love how you shake everything I put in your hand like a rattle using your whole body, and how you learned to clack two toys together so quickly that you shocked even yourself. I love how you reach up and touch my face when I rock you in my arms and how you're quickly learning that my glasses can come off of it. When I rock you to sleep you let out the sweetest little sigh right before you completely fall asleep. And I love how you sleep with your eyes slightly open so that we can't tell if you are actually awake. Once you've made up your mind to like someone you can smile and make them melt to your command.

You both babble and squeal all day long and it's music to my ears, even when you hit piercing notes. You both say "dadadada" and "nie nie nie nie" and blow raspberries with all your might, spitting so hard you have to close your eyes and squeeze your chubby little fists. You love to snuggle for your Granny Cathy and have made her so proud. She has a sixth sense and some how knew there were two of you in my belly because the night we told her we were pregnant she asked if we were sure there weren't two babies. I have no idea how she knew because we didn't even know then. You love to splash in the bath tub and kick more water out of the tub when Granny Cathy is standing close by, soaking me, the floor, the kitchen counter top, the dog, the kitchen window, the bath towel, and Granny. You love to look at each other, smile, giggle and call out to each other and pat, swat at, hit, poke, grab, yank anything you can on each other including but not limited to each others arms, legs, hands, ears, cheeks, lips, eyelashes, hair, clothes, feeding tubes (yikes!) and especially toys. You both are so big now and really keep us all on our toes and we are all waiting anxiously for you both to start crawling and walking any day now. Every day you do something new and show each other how to do new things. You are just the two most amazing little boys ever.

You have a special distinction that you are the very first set of twins on either side of our family ever. You are already each other's best friend. You are the apples of your father's eyes, and you have me so in love that I could not exist, would not be whole, if it were not for the two of you. You have changed our lives for the better. We are looking forward to so many events and adventures in your lives. There are so many things we want to show you and help you to achieve everything you want in your lives. How exciting it all will be!

Your father and I are so proud and honored to be your parents, to have you as our sons. We love you so much! Happy First Birthday.

Mommy & Daddy

p.s. Here are some more pics from your birthday party with your family.



Snuggling with Granny Cathy while watching The Backyardigans!

Thursday, March 26, 2009

Farewell Dear Friend

We learned that one of my mothers' oldest and dearest friends who has been bravely fighting two rounds of cancer passed away last night peacefully in her sleep. I have known this wonderful sweet woman almost my entire life. She has always been there for my mother and her family are the nicest people. I have so many fond memories of playing in their basement or in the back yard with her children. It breaks my heart to hear that we have lost another friend to cancer. It breaks my heart to see my mother lose yet another friend, so many have passed on or moved away already. There is nothing I can do to comfort her.

So when you read this please take a moment and call your mother. Give her a hug. And remind her how much you love her.


Monday, March 23, 2009

Adventures in Preemie Outings #7: Our first meeting of the minds

Friday was our first evaluation with the Mt. Washington Feeding Clinic. It turns out that since the boys aren't old enough for the actual clinic they are just being seen by the Speech and Occupational therapists. We got lost getting there and were so late that they were only able to evaluate Cameron so they will hopefully call me very soon with the next date and time to evaluate Evan. Based on what they saw for Cameron and what I was able to tell them about Evan we know that this will be a long road, that we will definitely and very sadly be skipping the bottle stage of their babyhood, and that both boys, especially Evan have some kind of sensory disorder which has a very slow treatment process based on how much they can tolerate.

Ultimately they goal of working with this hospital is to help the boys learn to eat as much as possible by mouth so that once they grow out of the reflux and can tolerate food in the belly we can start the process of removing the GJ tube to a G tube and then remove the tube all together. An addition to our therapy work with this group is to work on their sensory disorder once we know the extent of the overstimulation issues they have after further evaluation. Both boys, but especially Evan, have issues with very loud noises and do not like it when people touch their hands.

It was exhausting and Cameron wouldn't let the ladies do much with him during the evaluation because we will have to help him and his brother get over their stranger danger anxiety. Right now we think we will be meeting for one hour sessions once a week at the hospital. Both boys sessions will be at the same time in two adjoining rooms. One baby will work with the Speech therapist for 30 min while the other will be with the Occupational therapist for 30 min and then they will swap. Me and Granny Cathy will be running back and forth between the two babies the whole time for consolation and reassurance. This is going to be a long sloooooww process. It will be very rough in the beginning.

This weekend was so beautiful and there were so many opportunities to get out and start re-making our introduction to the world that we threw caution to the wind and went a-callin' on some folks. I mean why not, it's the end of RSV season this month right? Now that we'll be going to a hospital with other kids we will be exposed to the germs anyway. At least if we are going out we can do it on our own terms and chose where we go and who we see.

Our first visit was to Scott and Melissa to see their rockin' cool brand new house. It was moving in day for them and since Daddy was already there helping we dropped in to meet the moving crew (extended family and friends). There were about ten people there and after the initial shock and meltdown at having so many grownup people not dressed in white coats and scrubs staring at them the boys finally warmed up and let people talk to them. Evan, who has the worst stranger danger of the two babies, even let Melissa hold him for a bit. Cameron was particularly fond of poking his finger in the new carpet. From the looks on Melissa's and her mom's faces the baby fever is ON!

After a nap in the car the boys woke up to find them selves visiting Auntie A to try and cheer her up while she's on bed rest. Evan really enjoyed his time rolling around on her floor, chatting up a storm. And Cameron was most interested in making smiley faces at Auntie A and holding on to the edge of her couch. And both boys really loved how Uncle J and Little cousin L made faces and rocked them in their car seats. The boys have never been around another toddler and Little L, who's almost 4 years old, had just come back from a birthday party and was in rare form. Surprisingly Cameron and Evan didn't mind at all and were very intrigued every time she ran past them. It was a most excellent experience for the boys.

We drove home and Mommy got to give the boys their meds (and no one threw up!!) and baths and put them to bed all by her self! Woohoo! That is exhausting.

Sunday we went to the mall to hunt for snap up sleeper pajamas in 12mos and older. They don't really make them in those sizes often and are very difficult to find but we did have some success. There were plenty of comments and stares at our double long stroller and the typical "Are they twins?" question. (Um, no, don't know whatever gave you that idea.) During our outing we made what will now become a required visit to Redneck Wonderland (aka Bass Pro Shop) to visit the giant fish tank, rock climbing wall and waterfall. The boys really loved it and the bathroom is perfect for a double stroller. While we were doing our customary pre-drive home change of diapers an employee oohed and aaahed over Evan and proceed to tell me all the lovely details about her boyfriend's sister who's addicted to percoscets and just had a baby prematurely the day before and that the baby is addicted to it too, and yadda yadda yadda... I had to stop listening at that point and thankfully Evan took Mommy's cue and decided that screaming at the top of his lungs would be fun right then. She went on her merry oblivious way.

It was overall a very pleasant change for us to get out and see people we love and care about, and all on a very pleasant sunny weekend. Thanks to Scott, Melissa and all the gang for entertaining our little monsters and a big hug and kiss to Auntie A, Uncle J, and Little L for having us over for the afternoon.

Thursday, March 12, 2009

This Sh*t's Bananas! B-A-N-A-N-A-S!

In the immortal words of lovely lady Gwen Steffani.... She must have been inspired by her son Kingston.

I like food very much and like to think of myself as a moderately adventurous eater. But my least favorite food in the whole wide world is bananas. I hate them in any shape and form and permutation. They are nasty, smelly, slimy, putrid, foul smelling things. I have hated them since the day I was born. My mother remembers me heaving any time she tried to give them to me. They still make me retch and gag and recoil. A truly visceral reaction with the tingling in the back of my jaw and everything just from imagining trying to eat them.

So now that I have children of my own it's time to suck it up, do the right thing, and live with the ghastly things. Every mother makes their children try something even if they don't like it. It's healthy to try new things. You might say, oh you don't have to feed it to them, they'll try them on their own and if they like them great and if they don't no biggie right?

But today we hit the jackpot. The mother load. Amen, hallelujah, hells yeah, and Eureka! THEY. LOVE. BANANAS. I have never ever seen two babies get so freaking hysterical about having something put in their mouths as these two did today. They were grunting and squealing and opened mouths like little starving baby birds and we scraped the bowls clean. If he hadn't been strapped to his bouncy chair Evan would have fallen out of it he was so excited. Cameron is more reserved with his expression so I don't know if it's his favorite food as compared to carrots but he was still more animated than I've ever seen before.

We are only allowed to give them 1 tablespoon of stage 1 puree foods as a taste to keep them from forgetting what it's like to use their mouths and to work on desensitizing their mouths to flavors and textures because we will probably (and sadly) have to bypass the bottle stage forever. Most of the time they wont even eat half of the tablespoon and the session ends in gagging, heaving and vomiting, tears and a nap. Their oral aversion is pretty bad for right now and it will take time to get them to like putting things like food in their mouths. Hopefully teeth will come in soon (yikes and double yikes!) and that will help them jump that hurdle.

So far we have tried rice cereal with formula, avocado, prunes, pears, peaches, sweat peas, applesauce, sweet potato, carrots and now bananas. And the day had started off so badly too, with neither baby sleeping at all last night, both heaving and throwing up all their reflux meds, and neither taking more than a 20 minute nap from 4am to 2pm. Try and try and try as we might my mother and I could not get them to nap. And we had our usual 11:30am PT session and expected that to go horribly, but instead it was awesome. And the boys were in such good moods we decided to try a new food before attempting to put them down for a long afternoon nap. They stayed up for another hour and a half after the bananas.

The long afternoon nap isn't going so well but who cares? They ate bananas and were actually happy about it.

I love bananas.

Here are a couple of videos and pics of their high energy antics right after the banana session.

Wednesday, March 11, 2009

Let the battle begin!

To complete our truly miserable first experience with University of Maryland Medical System we have finally received our first summary statement of charges we incurred during our 21 day stay. We've been waiting on pins and needles because we could not find a single person during our stay there who could tell us how to get an advanced copy of our expenses so we could know what to expect to pay. Any guesses how much they charged for their lovely services?


That's $1800 per day per baby FOR JUST THEIR BEDS!!!!! With these bills we have already hit our catastrophic limit for the year, now two years in a row. Having combed through everything on the summary statement we discovered that we are being charged four times as much for Medical and Surgical supplies for Cameron than we are for Evan. And there are many other over charges for Cameron that aren't being charged for Evan. And I'm outraged that they charge for an OT and PT evaluation by the exact same people who just did the same evaluations 22 days prior in our 9 month old NICU follow up session. And why is the OT evaluation charge for Cameron $178 more than it is for Evan? They were both evaluated on the same day by the same people. Anesthesia is twice the cost for Evan as it was for Cameron but both boys had the same exact proceedures done. During our entire stay both boys had the exact same proceedures done with the only exceptions being one extra IV and one extra xray both done for Evan. I know because I was fucking there every second of every miserable day and observed everything they did, right and wrong, to my babies but be in the surgery room for the placement of the GJ tubes.

I can't wait to see what our insurance company will screw up when the actually send us the bill, because we all know it will happen. We have our letter of complaint to University of MD Hospital almost ready to go, and a copy will be sent to our insurance carrier as well as the government office benefits coordinator that works for my husbands company.

Yes, it's disgusting how the government has allowed price gouging to happen to sick and needy people. We need a change in this country right now! Damn the medical system. Damn it all to hell!

Friday, March 06, 2009

Adventures in Preemie Outings #6: A Lovely Day

It is a beautiful sunny and warm day today in Maryland and after running our usual errands without getting out of the new car so we can avoid the general public I decided I just couldn't bear the thought of going back home and walking the neighborhood again. Since we decided to replace the two trees that the power company cut down this winter I drove us to Homestead Gardens to see what they have for the season so far. I've never been there but Wow! That was the perfect afternoon outing for us!

There was no one there and the enormous hot house store was open and packed with new plants and planters and the most delicious smell of earth fragrant flowers everywhere. All the plants were so healthy and colorful and just ready to be planted in the warm sun. The boys loved looking at all the colors and reaching their hands out as we passed ferns and other overhanging leaves. They stared and squealed at the different water fountains and tranquility waterfalls, and babbled at the rain chains.

Both boys were in such a good mood all day just chatting at nothing in particular and squealing randomly with glee. It was just such a nice experience to be out someplace sunny and warm and friendly and open and where we could wander at a leisurely pace without crashing the stroller in overcrowded pathways.

This really makes me so excited to think that we've finally survived most of RSV season and in just a few short and fast weeks we will be able to go out in public. I want to go to the zoo, the National Arboretum, some museums, to the Butterfly Garden, to downtown Annapolis to walk around, to the Aquarium. There are so many things to see and do and it will be so nice to just get out and about. I don't even know where to start, but I can't wait.

Thursday, March 05, 2009

Hey all you Bloggers!

My littlest sister-in-law is trying her hand at blogging for the very first time. Please take a moment to visit her site and give her a shout out, will you?

She's a smart and funny girl and I'm convinced that together we all can turn her over to the dark side and make her a blogging addict.

Why do you blog?
What do you want to see?
What do you want to know?
What's your favorite thing to post about on your blog?
What's your favorite blog gadget?
What things do you wish you had posted about on your blog?

The GI Follow Up

Monday was the boys first snow day. We got them all geared up to take some pics in the snow but it was very windy and Cameron did not want to cooperate by sitting in his Bumbo chair in the snow and he was even angrier when I put him actually in the snow. Evan didn't seem to mind as much but when he saw Cameron melting down he joined in so our photo session was cut very short.

Tuesday was a busy day with an OT session, our GI follow up, and trying to celebrate Drew's birthday. On top of all that one of our computers crashed so I'm just now getting around to posting our latest update about the boys GJ tubes and their feeding and growth.

As of Tuesday the boys were on 24/7 continuous feeding pumps with Cameron getting 30mls/hr and Evan getting 27mls/hr of Neocate mixed to 30 calories. At the GI appointment Cameron had gained almost 2lbs since we were admitted to the hospital and he now weights 16lbs! Evan had gained about 1 1/2lbs since being admitted to the hospital and he now weighs 13lbs 9.5oz.

This is a feeding bag.

So now the plan is to increase the volume of feedings they are getting and slide in some breaks off the pump during the day in hopes of A) giving their bodies a rest from digestion, and most importantly B) making them a little hungry so that I can try feeding them during the day at least one "meal" whether that's a tablespoon of puree foods or one ounce of formula. The breaks off the continuous pump will start off with 2 hours and increase as the volume of food increases while on the pump so that they are always getting the right amount of calories without dissuading them from wanting to eat during the day.

This is the type of feeding pump we use.

Yesterday I increased both boys one milliliter per hour so that Cameron is now getting 31mls/hr on a 24/7 continuous feed, and Evan is getting 28mls/hr on a 24/7 continuous feed (we will give him at least one more bump up to 29 or maybe 30mls/hr by next week if he tolerates the increase) with no breaks for one week. Then next week we will give them a two hour break towards then end of which they should be hungry and I will try to feed them by mouth. In three weeks they should both be at about 33mls/hr to 38mls/hr continuous feed for 18 hours a day with a maximum 4 hour break during the day. I would like to see Evan consuming as much as his brother, but we just have to wait and see what his body can do.

Your next question is "How do you know they are tolerating the increase in feeding?" Great question! You have to look for signs of belly distension and possible vomiting or food coming back up through the sphincter separating the jejunum and the stomach. If that happens it's very uncomfortable and naturally you will have very fussy babies.

We are also adding back the Erythromycin antibiotic for both kids which works as a motility drug to move things through the stomach and intestines faster. This is because both babies, but especially Cameron, are having heaving and gagging fits throughout the day and occasionally at night and whenever we give them meds through the stomach. (By the way, it is very difficult to find a pharmacy that will make this medicine because it is a compound that must be mixed and the parts to it are very expensive. I found a pharmacy near us but it is going to cost $50 for a one month supply for one baby, or $83 for a 90 day supply for one baby. And that's apparently after our insurance picks up a portion!!?!??? We're still working on that with insurance but Yikes!)

We have been venting their stomach through the G tube port several times throughout the day by wrapping a surgical glove around the open tube. Thank god the guys aren't mobile enough to crawl around or that would be an ugly mess with saliva and bile everywhere. Today we will be having more permanent, portable and cleaner Farrell bags delivered by the medical supply company and we can hook the boys up to those all day.

I am concerned about one thing though and that's that my good friend Annie, who I've met through and who's son Jax is going through the same thing, mentioned the loss of fluids and electrolytes because of the stomach being continuously vented/drained to prevent the heaving and gagging. I am going to talk to the home health nurse that is coming to show me how to use the farrell bags and place a call to the GI today to ask about this. Since they're getting all their nutrients through their J tube and really only meds and tiny quantities of food are going to their bellies I don't think that they will be losing much from the saliva and bile that will drain into the farrell bag.

Another point that Annie had been told by her doctors was that her son Jax could not have the GJ tube McKey button placed until he was 20 lbs. That's distressing because both of us are a long way from 20lbs and this button means that there is no more huge three pronged port hanging out of their bellies so that they can't wear most clothes other than snap pajamas. I did ask our doctors and they said that they didn't have that kind of restriction and are only concerned that the stoma site (the place where the tube enters the stomach) is fully healed. They feel that both boys will be able to get the McKey buttons in just a couple of months, though this requires another hospital stay, more anesthesia and contrast IV dye reactions. I'm sure that things will be better this time because now we know what to expect.

Wow, I hadn't really thought about it, but this means we have to go back to U of MD hospital again and soon! Ugh. I hate this. I hate all the tubes, the hospital systems, all of it. But they are growing and they would not have been doing as well without these tubes. And they are almost starting to sleep through the night. The farrell bags venting their bellies should help with that. I wish the farrell bags could also replace the pacifiers in their mouths too.... I guess that's asking too much, huh?

We also have our first evaluation with the Mt. Washington Hospital feeding clinic. It turns out that of course(!!) we fall into a limbo category where my boys are too little to go through the full feeding clinic which is a Monday -Friday 8am to 4pm program with one nap a day. We are still napping at least three times a day. But they do have a program where they will work with you for 45 minutes a week with either an Occupational Therapist or a Speech Therapist until they are ready to move on to the next program. This will be in addition to our free Infants & Toddlers Early Intervention PT and OT sessions we are getting through the state and we will probably have to pay some out of pocket costs for whatever our insurance doesn't cover for this Mt. Washington program.

That's a long update!

Wednesday, March 04, 2009

Happy Birthday to my wonderful husband!

I love you more than words and actions and gifts and hugs and kisses can ever say!
Happy 35th Birthday!