life with a monkey

monkey (n): one who behaves in a way suggestive of a monkey, such as a mischievous child

We certainly chose the right nick-name for C, because he has become quite a little monkey. I'm waiting for him to start swinging from the ceiling fan.

• He's standing alone, unsupported, for very short periods of time ~ he even did it for Dr. B at Duke last week
• He took TWO STEPS all by his little self on December 13!!
• He loves pushing things all over the house. He either pushes his police car or crawls around pushing cars and chasing them. Poor Lucy seems to always be right in his path and has to jump outta the way just before being run over.

We also discovered that he's climbing. We were staying at a hotel this week and he went missing. Now, how can a baby go missing in a little ol' hotel room, you may ask. We were wondering the same thing. We followed this soft banging noise to find C up ON the bellman's/luggage cart, in the middle of our luggage, banging on the bars of the cart! On the cart...with wheels?!?!? I kinda freaked out...just a little bit. I mean, what if he had rolled himself down the hallway, onto the elevator, and right out the front door. Ok, ok, so that's overreacting just slightly.

But, let me back up a little bit to earlier in the week. I came home from work to find a rambunctious little monkey C playing in his room. He got tripped up because he was so excited, and fell, hitting his mouth on the edge of his little chair. He started the silent scream, you know the one where he looks like he's screaming his head off, but he's holding his breath, so no noise is coming out. And, BLOOD was gushing out of his mouth. Ok, well, his lip was bleeding. But to me, it seemed like it was gushing. I put ice on it and he recovered in about 5 minutes. As for me, I'm still trying to recover. And I'm pricing pillows, lots of pillows. It can't be that expensive to cover the entire house in pillows, right?

So, back to the hotel room. I mean, what if he fell off the cart and busted his lip again. Twice in the same week? Surely, that's unheard of. But apparently it's not because I've since heard many stories of spills, stitches, bruises, busted lips....

We were back home tonight, putting groceries away, when I noticed the monkey rounded the corner toward the stairs. He stood at the bottom, looking up and down the stairs like he was really assessing whether or not he could do it. And then he did. He hiked that little leg up, stuck his hiney out and up he went. He never stopped or slowed down and he went straight to the top. [Don't worry, I was right behind him the entire time as you will see in the pictures in the slideshow...in my slippers :)] When he reached the top, he had a HUGE smile on his face and was so proud. Then he turned, grabbed the handrail and tried to walk back down the stairs. He's FEARLESS and I'm not sure I'm going to survive.

For our own future reference, here are some other things he's been doing:

• Hugs Lucy *this one is super cute*
• Shows you his tummy and feet when you ask
• When you ask him what a dog says, he sticks out his tongue and pants
• Monkey see, monkey do: He is imitating everything, especially sticking his tongue out (picture in the slideshow)

Make an on-line slideshow at www.OneTrueMedia.com

Happy FIRST Birthday!!!!

Monkey,

First things first...YOU DID IT! Our goal was to have you tube-free by your first birthday and honestly, just a few weeks ago, I didn't think it would happen. But, you once again amazed us. You decided on Sept. 24 that you no longer needed that old stinking feeding tube and you yanked it out. Since it was 10pm and your Dad was in Mexico, I decided to leave it out and just see if you would eat well the following day, and you did. You've taken off since then, eating and drinking like a champ! We are so proud of you. It's hard to believe that less than 2 months ago, your G-tube surgery was scheduled and here you are, tube free.

Although we took a little detour to bringing you home, I wouldn't change a thing about the past year. Everything that happened has made us the family we are today. You have accomplished more in your first year of life than many will in their entire lives. You have touched so many people--so many more than we'll ever know about. Your story provides hope to families diagnosed with CDH every day. We are truly blessed to be your parents.

It's hard to even look back to that day a year ago and remember what it was like--the terror, the uncertainty, the excitement. We wanted you to stay put, because you were safe as long as you were in my belly, but we couldn't wait to meet you and see what your journey would be like. Thankfully, you have my determination (Daddy calls it a temper, but I prefer determination) and you showed those Doctors who was boss! You fought so hard to live and we'll forever be grateful to you and to God for that.

As of your first birthday you:

• are pulling to a stand and cruising


• are saying mama, dada, baba, ey (hey), ey baybay (hey baby?), nighnigh (night-night)


• are commando crawling and rocking on all fours


• are sleeping through the night, on your tummy, with your book (Peek-A-Who)


• have 8 teeth


• love chicken nuggets, grilled cheese, and apples (apple sauce, apple yogurt, apple cereal bars...you get the idea)


• when you wake up on the morning, we hear you squealing with delight, then you climb up to a stand and bang on the wall, laughing and talking, until we come in to get you


• weigh 21 pounds and are somewhere around 29-30 inches long


• are obsessed with opening and closing doors, especially when Lucy is outside. She's such a good dog--she just stands there waiting for one of us to rescue her and let her inside before you close the door in her face and laugh


• have drank water from Lucy's bowl and eaten several pieces of dog food


• are trying to climb out of your crib, which scares the beejeezus out of me

A year ago today, you:

• weighed 7 pounds, 3 ounces
• were 22 inches long
• breathed with the assistance of a ventilator
• were on many, many medications
• received your nutrition via TPN in an IV

We look forward to what the next year brings, although we're hoping you haven't been told about the Terrible Twos and Threes. :) The fight that we've seen in you to live, breathe on your own, eat on your own, overcome developmental delays...I hope it never disappears. I hope you have that much spunk and fight in you throughout your life (even though that probably means that your Dad and I are really in for it).

Love you bunches,

Mommy, Daddy & Lulu

11 months

In one month we'll be doing the BIG birthday post! Woo hoo! I'm sure that one will be all emotional and cause lots of tears.

Your biggest changes this month have been in the area of feeding. We have an appointment with Drs. Benjamin and Malcom this week at Duke and after that appointment, I'll share all that news. You still have 8 teeth, but two more are trying to pop through. At your last check-up with the Pediatrician, you weighed 19 lbs, 6 ounces and were 28.5 inches long. But, we weighed you today (at home) and you were 20.5 pounds. We'll see what the official Duke weigh-in is this week.

You are crawling all over the house and are so FAST! Your newest discovery are the doors and you love opening, closing, opening, closing... You have also discovered cause & effect and know that when you push buttons on your toys, they "react" by lighting up, playing songs, etc. You have discovered gravity and test it daily by dropping things from your chair. You're a master at feeding yourself and holding your sippy cup. We just plop you down, hand you the sippy, and you take care of the rest. You wave "bye-bye" and will give a high-five (intermittently). Just today you started saying (screaming) "nih-nih" and I finally figured out you wanted to go "night-night" because once I placed you in your crib for your nap, you went right to sleep.

You've also become very attached to something and like most kids, you refuse to nap or go night-night without this item. Your whole face lights up when you see it. But, unlike most kids, it's not a soft and cuddly animal or blankie. Nope, it's a book. And not just any old book (trust me, we've tried that trick & you just toss them out of the crib). But, it must be "Peek-A-Who" that accompanies you to bed. It's so cute because you grab it and "read" it to yourself, turning the pages, until you fall asleep with it tucked under your arm. We will be stocking up on extra copies of it!

Love you doodle bug.

10 months

I know, I know. I start every post wondering where the time went. Just wait until you're 16 and I'm making a big deal over you driving. I'm really going to get on your nerves then. I promise to at least hold in my "mommy-ness" until your friends aren't around :)

A year ago this month, you decided you wanted to make your grand appearance early. Luckily, Dr. Small & Dr. Forman at Duke stopped you and you stayed put until your lungs had a chance to mature. You were destined to be born in October [my birthday and Titi's birthday are in October].

So, what are you up to this month?

• I'll have to update your weight when we go to the Peds for your shots


• You have EIGHT teeth and they just keep coming! We ♥ Motrin.


• You want to stand up (that should not come as a surprise) and you've been standing up holding onto furniture. I think cruising on the furniture is in your immediate future. You are also starting to pull yourself up from a sitting position.


• You mastered combat crawling this week! It's so cute to see you scoot across the floor. The problem is, we have to baby-proof. You went straight for the TV and pulled all the DVDs onto the floor, and then for the big plant.


• You are sitting up like you've been doing it your whole life. Well, I guess you have been doing it for half of your life. Your skills are so great that we feel comfortable leaving the room while you sit and play. Besides, if something happens Lulu comes running to let me know I am needed RIGHT NOW!


• Speaking of Lucy. I have no clue what it is about her, but you think she's hilarious! All she has to do it stand there and look at you and you bust out with a full-body laugh. When she stands at the door to come inside, you just about come out of your swing trying to turn around to see her. So far, she has not stolen any of your toys, although you steal hers.


• When you are really concentrating on something, you curl your toes up tightly


• When you fall down or fall over, you get this confused look on your face until we say "Uh Oh!" and then you start laughing. You're a silly goose.


• Apparently I play around "sniffing" you more than I realized (it tickles your neck and makes you laugh, which is my favorite thing to hear). Now when you see me, you crinkle up your nose, put on this huge smile and SNIF! See the picture below.


• You have perfected saying mama, mommy, dada, hey, and what sounds like baby. It also seems like you are becoming discriminate in that you say mama for me and dada for your Daddy. You also screech and yell a lot. I think you like to hear yourself talk. Your poor Daddy is never going to get a word in between you and me talking so much. I shouldn't tell you this but when I was in 3rd grade, I made all A's on my subjects and got U's (unsatisfactory) in Conduct b/c I talked too much in class. Looks like the apple doesn't fall far from the tree.


• You're a little clingy this month, but that's "the age" from what we've been told. If I put you down to play and walk out of the room, you start crying and wailing, "maaamaaa" which makes me laugh. Not because it's funny, but you're just so darn cute sitting there with your arms stretched up in the air. If one of us gets near, you will grab onto whatever piece of clothing you can and pull yourself up into our arms. We're working on teaching you to say "up."


• You're still appeasing our requests to eat food and drink milk, but you don't enjoy it much. I'm hoping you will be reading this when you are a teenager wondering who I'm talking about as you are engulfing entire pizzas with your friends.


• You do, however, like ice cold water. And you like it even better if it's from a straw that's in my cup or your Daddy's cup. Stinker. I told Dr. B that this does not mean I intend to drink Prosobee formula just so you will copy me!


• You are mesmerized by running water and get a kick out of splashing in the River.


• This is one I haven't figured out yet, but you are terrified of the lamp in the foyer. It's just a black lamp but you stare it down whenever we walk past it.


• When you take a nap, you go from 60mph to zero in 1 second; when you wake up, you go from zero to 60 mph in a second. It's so funny because your eyes POP open, you grab the nearest toy and continue playing like you never missed a beat.


• Your favorite game is Peek-A-Boo or "Where's Carter/Mommy/Daddy?"


• You're still a clapping fool and you love to dance, especially when your silly Daddy sings to you

As always, you are a joy to be around. I am so lucky to be able to work night shifts so that I can be home with you during the day. Your Dad hangs out with you in the mornings so I can sleep, and we're thankful that his job allows him to do this.

Love you bunches Monkey,
Mommy & Daddy

9 Months Old

Happy 9 months my little Doodle Bug. Another month has passed, too quickly in my opinion!

Here are your 9 month "stats":

• You now weigh 18 pounds (8.2 kilos) and are 28 1/2 inches long ~ we are so proud of how well you are growing!


• You are talking a lot more now and say "ma ma" all the time! You also have discovered "shreiking" which sounds a lot like a Pterodactyl :)


• You are sitting up, unsupported, for long periods of time, playing with your toys ~ you fall over when Lucy comes up and starts licking you in the face, though! I'm waiting for the day that you start licking her back.


• You're not quite crawling, but scooting on your belly. You're soooo close to putting all the motions together.


• You can now clap, which is super adorable


• In the past week or so you have become very clingy and want your Mama or Dada around you. Other parents say it's just a phase you are going through plus you are teething, which can't feel good.


• You are pushing up on your arms really high ~ your Daddy snapped a picture of you pushing up and peeking over the top of your crib railing


• You seem to enjoy applesauce over sweet potatoes this month ~ you like to change your mind quite often, a trait you get from me

8 Months

I've written a note to Carter on his "monthday" every month since he was born for his blogbook. I haven't made any of them public, but I'm going to post this one so I can update you at the same time. We're becoming increasingly busy, which means less time for blogging! I've added some pics and video at the end.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


C:


You are eight months old now ~ 4 months shy of 1 year! I actually ordered your 1st birthday shirt this week, which is surprising because I am very superstitious. Normally, I would have waited until just before your birthday and then had it overnighted. But, I think excitement beat superstition this time!


The last time we took you in, you weighed 17 pounds and were 27 1/2 inches long. I know you've gained more weight but I can't report it officially because it's not a weight from Duke. You are taking in about 35 ounces of 27 cal./oz Prosobee a day ~ you still take the bottle at 9p, 12a, and 3am and the rest are tube feeds. You do the funniest thing when you have had enough of the bottle~you slap your hand up and down like you're tapping out of a wrestling match. We still feed you every 3 hours and you will only bottle feed when you are fast asleep. You are doing so well with solids and your favorites continue to be sweets (you get that from me). Your intake is increasing so much that Mrs. Leah says we need to start measuring how much food you eat, which is about 2 teaspoons at a setting!! Great job big boy!


You are a true boy (I now think that there are boy traits that are genetic). You laugh at toot/poot noises and you love trucks, trains, cars...anything with wheels. You also get a big kick when we take your stuffies and shake them like crazy so their arms and legs flop all around. If you see water, you almost leap out of our arms to get to it so you can smack it with your hands splashing it everywhere.


You have the cutest laugh now~you wrinkle up your eyes and nose and it's a full-body laugh, showing off those 2 teeth. You have 2 more teeth trying to break through the top, which is probably why you've started sucking on your thumb until it looks like a raisin. If it's not your thumb, it's your toes. I think you must be the happiest baby in the world because it's very rare that you are fussy or even cry. We put you in your crib around 8pm and walk out. You are asleep by 9pm and sleep until 9am! Yes, we are SO lucky to have such a good little boy. One of the nurses at Duke recently asked us if we were ready for another baby and I said, "NO! We got so lucky with Carter that we're scared to have another one because the next one might be a terror!"


You are becoming mobile and we call you the Disappearing Baby. Just last week, I put you on your play mat, walked into the kitchen for something and when I returned, you were gone! You were almost to the door. You combat crawl and scoot around because your arms aren't quite strong enough for real crawling yet, but I don't think it will be long before you're really on the move. You're also sitting up on your own for longer periods of time and will catch yourself when you start to teeter over to the side.


You have started waving and say hey, mama, and booboo (which I think is Lulu because you say it when she's around). We're now working on dada before he gets a complex.


You are a joy to be around and every new phase we think, "this is our favorite age" and then you do something the next month and it becomes our new favorite. I can't wait to see what this month brings us!


Love you bunches,
Mommy & Daddy

The Disappearing Baby:

He started on the blanket & did the "spiderman" across the floor

He started in the middle of the mat...

...and within seconds was on his way to the door!

Happy 6 Months Monkey

Today is Carter's half-a-year Birthday! Where did it all go???

He had a big day. It all began with UNC winning the National Title--I mean, what else could you ask for? He went to OT today to see Mrs. Leah and is making good progress. Then, he went to the pediatrician's office to get his last RSV shot for the season. What a fun way to spend your birthday :) Luckily, he won't remember it (until he reads about it in his blog book).

The big news is that he now weighs 6.75 kilos (14 lbs, 14 ounces). That's a 7 ounce gain from last week! We started adding just a little rice cereal (1/2 tsp. per oz.) to the bottles he takes PO at night and those added calories have helped bring on the weight gain.

I'm becoming quite the pro at getting things done around the house while wearing my newest "accessory"= Carter! I was running cold water in the sink today to fill up Lucy's bowl while wearing Carter and he reached right into the stream of water and loved it. I turned the water on later to show Brad and he reached right out for it again. While this may seem trivial, for a kid with sensory issues, this is HUGE!

6 Months Old Already??

Carter:

Today you are 6 months old and I can't believe that you are already HALF a year old! Where did the time go? You make our lives so complete and we can't imagine life without you. You weigh 6.75 kilograms (14 pounds, 14 ounces) and are 26 inches long. Your weight is in the 10th % and your height is in the 50th%.

We continue to go to Physical Therapy once a week, where you recieve craniosacral therapy and you work on rolling, sitting, and your overall strength. You also go to Occupational Therapy twice a week, where Mrs. Leah tries to help you learn to eat by mouth. We had to start using the NG tube again, but it's been a good thing because you are gaining much more weight now. That has helped up keep the G-tube monster away.

Your Daddy said the other day that if God came to him and said, "you can have a baby with no medical problems or you can have Carter," that he would, without hesitation, choose you. I agree! While we have our ups and downs, we would never, ever trade a single day with you.

Here are some things about you at 6 months:

• Your smile and laugh light up the room



• You are obsessed with watching Lucy and can't keep your eyes off of her



• You have this wobbly, bouncy penguin that you smack just to hear it make noise and bounce back to you--it's kinda like a punching bag
  


• You reach out and "rub" Lucy



• When Daddy and I lean in, you reach out with both hands and grab our faces; you also like to stick your fingers in our mouths and noses--you silly boy!



• Your fingers are always covered in drool--still waiting for those teeth to pop up



• Your feet, knees and chunkies (those are your thighs) are the most ticklish right now



• You are rolling over to your side and back to your back a lot; you still need help rolling all the way on to your tummy



• You are "talking" all the time; it involves a lot of screaming



• You learned to imitate us and go "ppplllltttt" with your mouth--it's so cute!



• You are saying "mmmmmm" especially when you are upset; I like to think you are trying to say "mama"



• You've started sucking on your thumb, but you always use your opposite hand to help your thumb find your mouth



• You grab your feet with both hands and then roll over to your side



• You still have to be swaddled to sleep, and when we unwrap you in the morning, both of your arms POP out and over your head in a biiiiiig stretch...then we get a big ol'grin
  

We can't wait to see what the next month brings us! We love you!

5 months old 3/7/09

I can't believe it's already been five months since you were born. You've been through so much in such a short time and I am so proud of your strength. We have been home a little over a month and you are making so much progress.

You currently weigh 5.935 kilograms (just over 13 pounds) and are 25 inches long. You are in the 5th% for growth.

You used to hate "tummy time" but you are tolerating it much better now and you hold your head up to look around. You are trying to figure out how to crawl and get so angry when you can't pull your legs up under your body. You are sitting up, with support, and have great head control. You are rolling from your back to your tummy, and we have to put positioners in your crib at night or you'll roll into the corner and then get really mad. You are teething, so we call you a "drool monster." I can see a little white spot on your bottom gum and you chew on your hands constantly. You have a really good bite, too! Trust me, I know from experience :)

You are amazed by your hands and fingers and go cross-eyed when you hold them out in front of your face. You can reach out and grasp toys, and they immediately go into your mouth. You have the most contageous giggle and your smile lights up a room. You laugh when Daddy whispers in your ears and are very ticklish. You squeal with delight when we do silly things--you especially like to see Mommy shake her hair and dance around. When you are in your crib you kick your legs back and forth for hours and we say you are "riding your bicycle." I think you're going to be an Olympic swimmer the way you move those arms and legs! Lucy loves to lick your feet and your face and you giggle when she does it, which provokes her to lick you even more. Lucy loves you so much and follows you around the house. I think you two are going to be the best buds when you get a little older.

That's your 5 month update!

We love you!

4 Months Old

Happy 4 months Carter!

We had our first check-up at Duke Thursday at the Clinic, and it went very well. It was so exciting to bring him into Duke and do normal things with him, like try to figure out where to change his diaper in public (no, I am NOT using one of those disgusting changing tables in the bathroom). They seemed pleased with how well Carter's doing and the progress he's made in just a week at home. We got to see some of our favorite Doctors and Therapists. After the visit, we swung by the ICN to say hello to some of Carter's Nurses (and show off his jeans to Erica) and we were able to visit with Dr. Goldberg, who is THE reason we chose Duke. Of course, he smiled and flirted with EVERYONE! We're so fortunate to have a baby with such a happy disposition. Even after hours of check-ups, therapy sessions, poking, prodding, etc. he was still smiling and laughing.

After we left Duke, we took a quick ride to Parker's House to pick up some things we left behind and turn in our keys. We ended up visiting with Michael and Carolyn, Davis's parents, and some of Carolyn's family members, who are the current residents of PH. It's a good thing we went because Carolyn was about to volunteer to become a "baby holder" at Duke just so she could get her hands on a baby :) Michael snapped some pictures while we were there, which are at the bottom of this post. We are so touched that he would take time away from what's so important to send us these. Thanks for making us realize that we need a better camera!

Dr. was ok with us leaving the tube out for now, but only if we are not getting anxious about feeding Carter. He said if we start to see ourselves pushing volume and forcing him to take more than he wants to, then we need to put the tube back in. If we push him too hard, it could completely backfire on us and cause Carter to reject oral feeds altogether. He didn't really gain any weight (just a few grams) so they made some changes to his feeds by increasing volume and kcals (additive to add calories to the milk). For now, we still have to stick to the Duke plan of feeding x amount every 3 hours--which means forcing him to eat throughout the night, when he should be sleeping.

One of our biggest feeding hurdles right now is that Carter will only "sleep eat." This means that he will only take the bottle when he's sleeping or very tired and distracted (like in the dancing video). You've never seen a temper tantrum like the one you receive when you take a wide-awake Carter from playing and show him the bottle. He does well sleep eating, usually taking his entire prescribed amount, but if he wakes up, it's over. The slightest thing, from the phone ringing to the doorbell, will cause him to stop eating and refuse to finish. Brad or I spend about 30-45 minutes prior to a feed tiring Carter and trying to get him to sleep. We then pull up all of his meds and give them to him by squirting a teeny bit into his cheek 0.1mL at a time (it's like watching paint dry); otherwise he gags and wakes up. He will take the bottle in anywhere from 15 mins to an hour and then we hold him up for 30 more minutes to help his severe reflux and keep him from choking when he pukes. Take another 10 minutes to wash everything and it's almost time to start on the next feed! (remember, he has to eat a certain amount every 3 hours)

Without the NG tube, Brad and I found ourselves running out of steam quickly in the last 48 hours. We ended up dropping the NG tube back in Friday afternoon because we realized that we were doing exactly what Dr. warned against. We were pushing him too hard and were really upset when he didn't take every drop of every feed. What we should be more concerned with right now is the quality of a feeding session, not the quantity. The specified quantity is necessary, but with the NG tube available, Carter is free to take as much as he desires by mouth and we give the remainder via the tube. We need to get Carter to a place where he will willingly take the bottle when he's awake and aware.

We also are going to have therapists (probably Occupational and Physical) coming to do in-home therapy. That's really going to throw our schedule for a loop! The ones with Developmental Services/EI should be coming out in the next 2 weeks to do their evaluation and set up how often each week they will be visiting. We're hoping to get a private OT in next week though, because we really can't afford to have a lapse of a few weeks in therapy. (We're also looking forward to the Spring, when Carter is allowed to do outpatient therapy with Miss Leah!)

I've been doing the midnight and 3am feeds, while Brad gets some sleep and he takes over at 6am, while I sleep. But, I had to go back to work tonight, after a week off, and I don't know how we're going to find time to fit it all in! Brad goes back to work on Monday and we're going to try to juggle Carter's schedule between the two of us, with me working permanent nights. We barely have time to even shower--to our coworkers: if you smell baby puke, yes, it's us; please kindly remind us that it's time to shower! We spoke with the pediatrician today about the possibility of hiring a night nurse/CNA/nanny to come in a few hours a day to help out and are waiting to hear what she finds. It has to be someone with medical knowledge because he/she will need to draw up meds, use the feeding pump, etc.

I know all parents of infants loose sleep, but most of them have more than just one week after bringing baby home from the hospital to settle in before returning to work. Brad and I don't have maternity/paternity leave, so we're trying to figure it all out in a few days, while working and being severely sleep deprived (I'm talking 2-3 total hours of sleep in over 48 hours). But, would I trade it? Nope, absolutely not. I'd take never eating or sleeping again just to have Carter home.

We had to go to the pediatrician's office today for a weight check and his RSV shot. We saw a different Dr. from our primary ped., but she's also very knowledgeable about CDH/ECMO kids. She said Carter was the best looking (health wise) CDH child she'd ever seen! She was truly amazed at how well he is doing, which gave us the chance to brag about Duke and how FANTASTIC they are. I think we should start charging a referral fee to Duke--haha :)

p.s. there was a lady in the ped's office staring at Carter's NG tube like he's some freak. if you happen to see a child who doesn't fit into your sense of "normal" please don't stare.

It's going to be very important that we keep Carter on a strict schedule so we can fit in everything we have to do, and so he can organize his sensory system. We have a spreadsheet on the fridge to keep track of who did what, when and what's due each hour. I'm going to have to alter it to include his therapy sessions and weekly visits for weigh-ins at the peds office. We just can't afford to throw him off of his schedule and get behind or for a feeding session to be interrupted, so we're going to continue to ask that people not visit.

If any of you, especially families of children with special needs, have any suggestions about how to balance both parents working + taking care of Carter's needs, please send them our way.

3 Month Birthday

That can't be right, can it? Have we really been here 3 months? Wow.
We had a fantastic meeting this morning with Carter's medical team and speech therapist and we've decided to delay the G-tube for at least a few weeks. The plan is to continue to treat the reflux, with hopes that he won't need the G-tube in the long run. We both feel really good about Carter's outlook after this meeting. The G-tube hasn't been completely ruled out, but for now, there are other measures we can do that could prevent it. They are keeping the volume of milk reduced, but will likely supplement with additional calories so he continues to grow and develop. He's currently in the 19% for weight and the 82% for height, so at least he's still ON the growth curve :)

As much as we are looking forward to going home, we'd much rather stay here another month or two to take home a baby who's bottle feeding than be home in 2 weeks with a baby who's completely G-tube fed and who has uncontrolled severe reflux.

Keep your fingers crossed for controlled reflux, a healed esophagus, and a bottle-fed Carter!

Happy 2 Month-Day

We had a very eventful "monthday" for Carter. I ended up catching a ride on an ambulance to the ER at Duke last night due to a terrible bout of food poisoning. Brad said when the EMTs arrived, I was gray and apparently gray is not my color! We spent the entire night in the ER and after I fell asleep around 4am, Brad went up to visit Carter--what a surprise to the nurse to see him at that hour. He said Carter was laughing and dancing, so apparently he's become a night owl (thanks to nurse Lindzie playing with him all night), which is going to be great since I work night shifts and need to sleep during the day.

Carter's doing well. He's down to a very low level on the morphine, which should be completely off tomorrow and then he'll have his PICC line removed. He's just recently started showing some withdrawal signs, mostly as snit-fits (as nurse Shanda calls them) during which he goes from smiling baby to pissed off baby in a matter of seconds. He cries, turns red, lips turn blue, breaks out in a cold sweat, throws his arms back and holds his breath. He's still pretty hoarse, so his cries are pitiful. He looks like he's screaming his head off, but all you hear is a little "heh" noise. Typical baby temper-tantrum mulitiplied by a hundred because of the withdrawals. It takes us about 30 minutes to get him to calm down and then he sleeps for a few hours. We're so thankful that he wasn't experiencing this type of withdrawal all along. He's being given meds to take the edge off the withdrawals, but it's just something that he's going to have to outgrow. For right now, we're trying to limit visitors and stimulation so he can stay calm.

He's "eating" 92 mL (just over 3 ounces) every 3 hours through his NG tube. Speech, OT and PT haven't been able to do much therapy this week because of the snit-fits, but we're hoping we can get the ball rolling next week on oral feeds. He's also a champ at filling up that diaper!

Elizabeth, from Breath of Hope, has a website on which she features CDH kids. Carter is currently the featured baby and you can check him out at: http://facesofcdhawareness.blogspot.com/

GIGGLE-FEST VIDEO:

Happy Birthmonth Carter!

Carter is one month old today and we are truly amazed by his strength and by all the support we've gotten. We love all the comments on here, the emails and cards--they help to keep us going each day.

Luckily, I don't have much to report. They continue to slowly wean the support Carter is receiving. As of this afternoon, he was essentially breathing room air on the conventional vent. We've heard chatter about starting to wean his sedation, but that makes mommy and daddy nervous. He doesn't seem to be quite as sensitive and when he does get upset (his blood pressure goes up for a few seconds), he is able to quickly recover on his own without the help of additional meds. I think I forgot to mention that the surgeon wasn't able to completely close his abdomen, so he has a patch covering that opening that they plan to close up on Wednesday--surgery #4!! It certainly doesn't seem to be bothering Carter, but we'll be glad when his insides are actually on the inside :) We're happy he didn't need a silo and that everything almost fit inside.

We have to say a very special THANK YOU to our Carolina Therapy Services family. You have gone above and beyond to make this easier on us and we appreciate you more than you'll ever know.

Also, thank you to those who have made donations to the Parker Reese Foundation. I promise to work on the thank-you notes as soon as I can. The Foundation has not only given us a home, but also an extended family in Jes & Ashley. The Foundation has a new website at: http://www.theparkerreesefoundation.com/

Please keep James, Monica and Connor McGuire in your thoughts, prayers and finger crossing. Connor has Autism and had been diagnosed with Infantile Spasms. It seems that his spasms are getting worse and the new medication he's on for seizures has some yucky side effects. The strength and patience they have shown with Connor (and especially some of his nurses and doctors!) is inspiring to us. The link to their blog, McGuire Family, is to the right or click here: http://connormcguire.blogspot.com/

Doctors and Nurses and Babies...Oh My!

John Carter Myers arrived at 1:00 pm today (Tues. 10/7) and weighs 7 lbs, 3 ounces, 21.9 inches long! He let out a little cry and squeezed Daddy's finger. His stats were good when they took him to the ICN and we're just waiting to get in to see him now. I called an hour ago and his nurse said that his oxygen and blood pressure were good (Oxygen was in the 70s breathing on his own when he was born) and that he's trying to pull out the tubes and lines, so they'll likely sedate him! What a stinker!

We lucked out and had an easy labor. They began induction around 9pm last night, stopped pitocin around 3am and we went on our merry little way from there. I didn't need a c-section because he responded well to the contractions, so Mommy is doing well. I just have to add that Brad has been wonderful. He has been a rock and is waiting on me, doing whatever I need. He even asked the doctors in delivery what he could do to help me.

And as a reminder, this is what I posted about a dream I had a week ago:
"I had a dream last night that Carter will be born on a day with a 7 in it at 1:00pm and he had a head full of dark hair. That leaves Sept. 27 and Oct. 7. There was also something about a Tuesday, but I don't remember what."