Nineteen and counting

Robbie has now broken 19 pounds. If only he weren't so wiggly, I'd measure him. He's definitely growing. He has very few 3-6 month clothes left that fit. He's solidly into 6-9 month clothes.

He's working on the new sound "na na na" and has been making funnier facial expressions including a scrunched up face that I think is supposed to be a cute smile and a grimace that is pretty funny.

Tonight I caught him using his index finger to spin a toy. Love those fine motor skills!

I'm wondering if his top teeth are EVER going to come in. He's been working on them for months, but the last 2 weeks we've had several days where he just seemed downright miserable and is chewing on everything. He even had a low-grade fever most of today. Fortunately he's still in a good mood, though he's not sleeping terribly well.

This weekend he got to spend time with his great grandma and great-great aunt Hazel. He was a constant source of entertainment for all.

Of course, he's still handsome as all get out.

Is this thing on?



I'm learning how to put things in and take things out. Mommy thinks this is pretty cool.



Good doggy.



My OT brought me the tastiest therapy toy!



There's a toy in there!



Carnac the Magnificant says "the answer is....."



Everybody shout! shout!



Garcon! Garcon! Service please!



My new frustrated face.



here kitty, kitty.





A very short video of Robbie demonstrating his new grimace.



--Trish

Brief update with pics

Not much to report, really. Robbie's been very clingy and a little cranky. I think he's working on his top teeth. Still no signs of them breaking through, but they're swollen for the umpteenth time.

I like the extra snuggles, though I must confess that after several hours of insisting on being held, naptime or bedtime is a welcome reprieve. He weighs 18 1/2 pounds now- he gets heavy!

He officially hates a toy for the first time. It's a toy we gave him for Easter. He loves part of it. It makes an obnoxious repeating noise when you hit a button. He'll hit that button 20 times in a row. But the other part of the toy, you pull a lever and it plays a song. Every time you play the song? He cries. I mean, full out, sad-with-tears cries. It's bizarre and a little funny.

It takes a few minutes to calm him down afterward. I'd post a video of it, but I don't want to make him cry on purpose.

You'll have to settle for pictures.

I don't think he actually consumed any food here, but at least he had fun.



Cheese!



Playing with the blinds.



I love my puppy.

A bubble bath in the big tub!

--Trish

Toot Toot

A certain Robbie's grandpa was complaining that we hadn't had any new pictures of videos in SIX WHOLE DAYS, so here's a video to tide you over until I can put together a real post.

Lately, he thinks "toot toot toot" is a pretty funny sound.



--Trish

July 10, 2009

Robbie is finally over his cold and bronchiolitis. He stopped wheezing last Thursday. He had one last albuterol treatment on Friday (mostly because I'm a paranoid mom) and then had to have steroid treatments for another week. His last one was this morning.

He also finished his antibiotics this week. I thought we'd escaped the antibiotic diaper rash, but alas, yesterday his poor little bum was suffering. It's the first one he's ever had. I'd been keeping him smeared up with Butt Paste the whole time anyway, but I've now added a paste of Mylanta. Today it seems a little less severe. I'm hoping it's gone soon.

He's been doing a few new really cute things.

He's started sharing. I think it's especially cute since no one really taught him this one. Just all of a sudden he started handing me his toys. He doesn't always want to actually let go of them, but he likes to hand them to you anyway. The other night he was even "feeding" me. He was playing with some paper and I was laying in the floor next to him. I guess he decided he was having such a good time chewing on the paper that maybe Mommy would like a bite, too. So I'd growl and gnaw on it and he'd giggle, then take it back. Then he'd put it back in my mouth and we'd do it all again. Just a little while ago, he was sharing his pacifier with Grandpa. He must love Grandpa a lot to share his most precious item!

Robbie also is exploring his toys more and more. We have one of those peek-a-boo toys that pops up when you activate a lever. Then you push the toys back down. He's learned to push them down. Sometimes getting that last little bit down to get it to click is a challenge, but he definitely wants to close them all the time. He's loved his toys for a long time, but mostly to bang on or shake. It's amazing to see him figuring stuff out.

He's been babbling "dadada" quite a bit. He still also loves "baba" but seems to have forsaken his poor "mama."

His physical therapy went exceptionally well this week. They were working on crawling and he was really getting the arm movement part pretty well. We've continued working on it this week and he's getting better and better about moving his arms forward. I really have been convinced he wasn't going to crawl (would just go straight to walking) but the way things are going, I think it's possible that he'll be at least army-crawling sometime soon.

He broke 17lb this week. That honestly sort of blows my mind. Seventeen pounds just seems BIG. And it sure FEELS big when you add 8 pounds or so of carseat and lug the whole thing around. He's still short as all get-out which is making clothes sizing interesting. He's wearing 3-6 month clothes, but the belly and legs are stretching a lot of them. I will never complain, though. It's just lovely seeing him thrive.

My favorite development is that he's started giving affection. I don't think he quite understands a kiss just yet, but he'll lean his head in and give you a head bump occasionally. I thought it was a sign of affection for a while and talked to the OT about it yesterday and she confirmed that's pretty normal. First he understands getting heads close together, then you'll get an open mouthed kiss, then finally a pucker (if we're lucky.) So I'm thinking of it as a head-kiss. It's pretty cute. He'll be playing and going wild, then suddenly stop & lean his head in to bump yours, then go back to playing and going wild again.

In less fun news, he's had a bit of a rough time with his reflux again this week. Yesterday was a particularly unpleasant day. He starts his morning with a breathing treatment and a feeding and he actually puked into his breathing mask. Then less than an hour later, he puked upward and managed to get it in his eyes. That's really not the way anyone wants to begin a day.

It's frustrating to not really be able to do anything about it. And knowing that 99% of kids outgrow it by now. Robbie always has to defy the odds. His OT even commented yesterday that he "wins the award for the worst, most stubborn reflux" she's ever seen. That's not an award we wanted. It's really annoying because, for example, yesterday during therapy, she couldn't do some of the activities because every time he'd try to lean forward to get something, he'd audibly reflux & cough or start swallowing hard. Please keep praying this reflux finally stops.


And with that- some updated pictures:

Sitting in the sun



Is this for me?



Meeting a new friend.



Whoa Horsey!


Grandma helps me explore.



My grandma made this outfit for my daddy in 1970!



Happy Independence Day everyone.



My shirt says I'm a little pirate, but I seem to still have both legs.



Learning to crawl in therapy.



HAHA! Mommy's funny!



I don't know what I used to hate about baths. They're pretty cool.



Be sure to photograph only my good side, dahling!



A rock star in the making.

--Trish

Chart Maker

Short of the fact that Robbie is still wheezing, it was really a good day in his world.

He slept well all night without having to be woken for a breathing treatment. (The doc said I only have to wake him for a treatment if he's wheezing in his sleep.)

Then this afternoon we had his 12 month check up. (Yes, at 13 months. We're a month behind on everything because we delayed his first shots until he was 4 pounds.)

Dr. P had nothing but positive things to say.

He weighed in at 16lb 4.5oz. Measured at 24 3/4 inches long. I didn't get his head measurement but I could probably figure it out BECAUSE IT WAS ON THE GROWTH CHART. For the first time in his life, he's on a regular (not adjusted!) growth chart. His giant noggin is in the 10th percentile.

We're still working on weight & length, but his weight made a huge leap upward. Right now he's projected to catch up on weight around 15 months old. Length isn't even remotely close, but she said it's always the last to catch up and she really isn't worried about it. If he's not caught up by age 3, we have other things we can work on it with.

She asked about all the fun things he's doing and decided that his development is somewhere between adjusted and actual age. She wrote down 8-10 months (he's 10 months adjusted.) but that's allowing for the things we know he's behind in (mainly gross motor stuff. Since he's just now sitting very comfortably unassisted, that'd be around 8 months, for example.)

Overall, he's doing very well.

Then we got to the illness stuff. He was wheezing in the office, though he'd cough and clear himself occasionally. If I could teach him to cough on command, he'd be golden. She stopped his oral steroids and started inhaled ones. (That's a step down treatment. Progress.) She checked his ears and said the infection seems to be cleared up, but he still has fluid, so we'll watch them.

We also talked about the winter. She really wants to get him approved for Synagis shots this year as well. Synagis is an injectable that helps fight RSV. RSV is the most common cause of lung infection in children. For most people, it's not much more than a common cold, but in someone in a weakened state, it can be very serious.
Synagis isn't a vaccine, but if a child is exposed to RSV, the Synagis helps it from becoming so severe.

The trouble is that Synagis is EXTREMELY expensive. (Let me say that again- EXTREMELY expensive. We're talking more than a thousand dollars per month, and he gets it for at least 5, sometimes 6 months.)

He was easily approved last year because of his gestation age and weight at birth. This year, things will be harder.

The good part about him being sick right now is that it might make getting approved a little easier. She added that if he gets sick a 2nd time, it will probably guarantee it. That also lead her to tell me that I shouldn't try to avoid him getting sick again because it would help our cause.

That doesn't mean we'll be letting strangers cough on him, simply that if he does get sick again, it has a silver lining.I will resist my urge to put him back in a bubble after this is over.

Her main concern is that if he got THIS sick from a less severe virus, if he got RSV, he'd be in real trouble. So she wrote for him to be submitted for Synagis approval. Cross your fingers!

He couldn't get his vaccinations today because of the illness and because he's been on oral steroids. Both things mess with his immune system and she doesn't want to tax him any more than he already is. The plan is to keep up the current regimen of meds until he stops wheezing, then he'll get the inhaled steroid for another week past that. At that time, he'll get his last vaccination and she'll double check his ears & lungs to make sure he's in the clear.

She guesses another week of Albuterol then the week of Pulmicort for two weeks more of breathing treatments.

On that front, things have improved. Robbie has finally accepted the treatments as part of life. He still flinches every time you turn the machine on (it's very loud, even wrapped in a towel) but as long as you give him a minute or two to acclimate to the noise before going at him with the mask, he does just fine.


Tonight he even decided he wanted his paci while getting a treatment. He found himself very frustrated trying to get it in his mouth with a mask on so I helped him out. Of course, then he got frustrated again trying to figure out how to get his hands to the paci to hold it in, but he managed. My boy, the multitasker.
So all in all, it was a good day. It felt SO good to see him on a growth chart. Just another step towards normalcy. We'll take it!

--Trish

Sick

Well, it's been a heckuva few days in Robbie's world.

Tuesday night/Wednesday morning, Robbie was really restless, up several times during the night and just generally grumpy. I couldn't figure out what was wrong until 9am Wednesday morning when Robbie started coughing.

We've been EXTREMELY fortunate that Robbie has shown no signs of chronic lung disease so far. But being a preemie, even a healthy one, his lungs are less developed than another baby his size. If a full-term baby's lungs are straws, Robbie's are coffee stirrers. So it doesn't take much to gum up the works. So I called the doctor right away.

That afternoon, Dr. P declared his lungs & ears clear. Just a chest cold. I was relieved until she added "but I will say, he does sound like a kid who's going to start wheezing tomorrow. If he does- bring him back." Ominous.

Thursday was pretty much the same as Wednesday until late in the evening. But just before bedtime, he seemed to be breathing very heavily. I wasn't quite sure what qualified as wheezing but wanted to err on the side of caution, so I called the answering service. A nurse from Children's Hospital called back and went over his symptoms. In the end, we decided that he wasn't wheezing, but he was working harder to breathe than we'd really like, so to keep an eye on him.

After he went to bed, he seemed fine. Slept pretty well and sounded okay. But by morning, he didn't sound so great. It was the same deeper breathing as before, but just at the end of it, it sounded.....off.

So I decided, once again, to call the doctor. They had us come right in.

I truly expected to be told I was over-reacting and to just let him get over. Dr. P isn't in the office on Fridays so we saw the covering doctor.

I swear, while we were in the exam room waiting to be seen, he went from not-quite-right to very-very-wrong. There was no question it was a wheeze. The nurse came in and had a look at him. She asked if we had a nebulizer. I told her no and she replied, "I bet you get one today."

The doctor came in a minute later and declared to Robbie, "You sound awful!"

They did a pulse ox and his oxygen saturation was 94%. It should be 95-100. Not scary bad, but not good.

So they did a nebulizer treatment with some Albuterol to open up his lungs. Checked his oxygen again- 95%. Better, but still not great and he still sounded horrible. So he got a 2nd treatment. Still 95%, still wheezing.

That was when I heard the words I don't ever want to hear again. "I think he's going to need to be admitted." DARN DARN DARN!

We discussed hospital options (deciding to go with our "usual hospital" (How sad that we HAVE a "usual hospital.") because it has private rooms.) and the doctor went off to set up the admittance.

The doctor came back and said that the hospital didn't want to do a direct admit, but preferred that we come to the ER for a complete work up before admittance.

So off to the ER we went.

At the ER, they did another Albuterol treatment (no change) and a chest X-ray to check for pneumonia.

No one thought he had pneumonia because he didn't have a fever and frankly, wasn't "acting sick." Yes, his breathing sounded like crap, but other than being cranky about the coughing, he was really pretty happy and playful. I certainly knew he was grumpier than usual, but it's not like he was whining, crying, clinging or lethargic.

But then the chest X-ray came back with a hazy spot on one lung. Pneumonia was suddenly a possibility.

That earned Robbie some blood work. Needles. Poor Robbie.

In the meantime, they decided to give Robbie a round of steroids and another breathing treatment.

This time, it was like night and day. Suddenly he was breathing normally and quietly. And the grumpiness was gone. He was a happy kid.

Then the blood work came back great. No elevated white blood cells (no sign of infection) and a marker for inflammation was zero. YAY!

The theory about his lung haziness is that because he pukes so much, he probably occasionally aspirates some of it. He lung probably always looks cruddy but he's able to compensate for it. It's not ideal, but manageable.

The doctor asked what I thought. I said he seemed SO much better. He agreed and said we could go home. They set us up with a nebulizer for home and gave us scripts for steroids and Albuterol. They called our doctor's office to let them know the outcome and the doctor asked that we bring Robbie in on Saturday for a follow up. As luck would have it, Dr. P was working Saturday.

The night went pretty well. Robbie seemed so much clearer and happier. He woke up Saturday morning sounding pretty good.
We called the office and they had us come straight in.

As we arrived at the office, he started wheezing again. He was overdue for a breathing treatment, but he sounded SO bad, I was honestly afraid they were going to send us to the hospital again.

We got in there and they checked his oxygen saturation again and they were at 96%. Big relief! They gave him another treatment while we were there and he cleared up again.

The only bad news was that he was starting to get an ear infection. So we got some antibiotics added to our regimen.

Overall, Robbie's doing okay. This morning he was pretty crusty again, but after his steroids and the breathing treatments he was much clearer again.

As luck would have it Robbie has a well-baby check on Tuesday (which yes, will make his 4th trip to the doctor in a week) and I'm hoping by then things have drastically improved.

Keep us in your prayers!

And for a few pictures-

Grumpy Robbie at the zoo.

We met our friend DaRonda and rode the train!




It was REALLY hot that day, so mommy kept me soaked with water to keep me cool.


I'm still fascinated by my birthday balloons.



Since they don't float any more, they're down on my level.



I really love my birthday Moose, too! That's his leg in my arms.


I love sleeping in my own crib these days.


I can even hold myself up on the side.



Though sometimes it's tricky to hang on!



Mommy? Can I eat the camera now?



--Trish

Robbie Giggles

A short, dark, but totally worth it video. Turn your sound on!

Then and Now

The day that Robbie was born was not the typical excitement filled event that most people think of when they think of the birth of a child.

My morning had started with symptoms leading the doctors to believe that I was nearing both organ failure and a stroke. We had about an hour between being told the time had come and actually making it to the OR for the C-section.

David and I were both terrified. No one could even guarantee that Robbie would survive birth and what would come after was greatly unknown.

Once we got into the operating room, things were mostly quiet. We didn't know if we were having a boy or girl, though I was convinced he was a girl, (and called him "she" for the 6 months I was pregnant- sorry, Robbie.) so there was even more unknown.

I was completely drugged up both from meds for the surgery and meds to keep me from seizing or stroking, and was pretty out of it. David was just quiet. Neither of us spoke much.

When they pulled Robbie from my belly, I heard one doctor quietly say "He's out." Before I could process the pronoun "he", the same doctor said, in a more excited tone, "Oh yeah! It's a boy."

My first thought was surprise. I'd been so sure he was a girl. I thought "really? A boy? I'll be darned."

But David.... David leaned down and whispered in my ear "It's a boy." I wasn't sure if he wanted to make sure I'd heard or if he was telling himself. But I knew he was proud. You could hear the emotion in his voice. More emotion than I'd ever heard from him.

Before I could even respond, he followed it with "I wish my dad was here to see this." Then he bowed his head and sobbed. Joy for his son and sorrow for his dad.

Watching him be a dad and knowing he learned from an amazing one has been incredible.

Here's to fathers everywhere.



Father's Day 2008


Father's Day 2009



--Trish

June pictures

Robbie is now 15 1/2 lbs.
He has 2 teeth.
He's sitting up unassisted. (Though you still have to help him get that way.)
He's learning to stand up by holding onto furniture and hands.
He has lots of cooing and babbling sounds including ba, boo, ma, yah, dah, ah and gah. No real words yet, though he seems to say "ah-ha!" and "ah-gah" as a happy greeting to people or pets.

Here are some recent photos.

Out to lunch with mommy & her friends.



My pictures are tasty!



Someday my comb-over with rival The Donald's.



Chillin' out with Daddy.

There are teeth in there!



Grandpa's trying to teach me bad tricks.




Baby in a do-rag.

Catching Up

It really has been such a crazy few weeks in Robbie's world.

The week before his birthday, he finally cut his first tooth. I'd begun to doubt they were ever coming, really. We'd had several rounds of drooly-chewy-whiny-gum-swelling and still nothing.

But about 10 days before he turned one, we were playing and I found myself covered in drool. I asked him if he was ever going to get those teeth and tried to take a peek. He wouldn't have it, but finally let me stick my finger in his mouth and have a feel. And...hey! that's sharp.. there was something poking me.

So we wrestled a bit more and I had a peek, and sure enough, there was a little corner of a tooth in there. And much to my surprise, I could see another one right next to it just under the surface of his gums. Sure enough, the next day, his second tooth and broken through. Two in two days!

Thankfully, he took it very well. The 4th day, he was a bit crabby and seemed more bothered by his mouth than normal, so I gave him 2 doses of Tylenol during the day, but other than that and some restless sleeping for a few days, he was pretty unaffected.

He's also been gaining weight pretty well. He had a really awful reflux flare up the weekend of his birthday (yeah, happy b-day to him. ugh.) and was on a light diet for a few days, but outside of that, he's gaining an average of an ounce a day. As of tonight, he was 14 lb 13oz.

He's still sleeping in the bassinet next to our bed. The trouble is that is has a 15 lb weight limit, so in the next day days, he's going to be transitioning to his crib. (Yes, I know, you're all gasping that he's 1 and still in our room. But it worked for us. Let's move on.)

He's obviously getting stronger and stronger as well. He sits up quite well and only falls over occasionally, usually when reaching especially far for something or twisting around backward to watch something (usually one of the pets or his dad.)

In a very tiny thing that made me very happy, he managed to feed himself a puff the other day. The solid food is still very intermittent. He'll eat an ounce or two of baby food, but lately he's been puking it back up very quickly as well. And anything with chunks at all, and he gags and chokes.

He has gummed a few puffs and some yogurt whips, but usually if they make it to the back of his throat without being completely dissolved, he freaks out and I end up having to sweep it out of his mouth or he'll gag himself to the pukes.

The puff he fed himself, he actually picked it up and put it in his own mouth and CHEWED it. It was amazing. Then he swallowed it! Of course, 2 seconds later, he gagged until he threw up some milk, but hey, baby steps, right?

He's also been able to visit with more people and do more things. On Saturday he went to a birthday party for his NICU buddy, Gavin. Overall it went well. Gavin's a preemie superstar and had a good time. He's crawling very well and kept coming over to Robbie and another preemie friend, Lexi, and trying to push them over. I don't think he quite gets the concept of "play" yet, but at least they interacted a bit.

Robbie, on the other hand, is a completely sensitive soul. Every time one of the other kids would cry, Robbie would well up with tears, look at the crying child with great concern and start to whine. I hope he keeps his sensitivity as he ages.

We also had a big outing this last week. We visited the daycare that Robbie will be going to when I go back to work.

I was extremely, extremely nervous about it. I dread going back to work as it is. I wish I could stay home permanently, but it just isn't in the cards. Thinking of having to leave Robbie with someone else is daunting anyway, but then you add in all of his feeding difficulties, and I was really concerned they would say they couldn't handle it.

We ended up spending about 2 1/2 hours there. I did a complete G tube feeding for them so they could see what was involved. They seemed relieved that it was as easy as it was. (It's really quite simple.) My biggest concern, though, was the writhing and crying that comes with a feeding. Robbie didn't puke, so they didn't get the full experience, but he did whine and cry a bit. They got to see that it's not the pleasurable experience that eating is for most people. And they were okay with it.

We talked a lot about everything, went over all of my questions and all of theirs. In the end, I came out feeling MUCH better about everything.

I still wish we could hit the lotto before August so I could just stay home, but barring that, I at least feel like he'll be well cared for in my absence.

Overall, it's been an amazing few weeks. We still have a long way to go until "caught up" but it's nice to see some strides in the right direction.

We could still use some prayers in the stomach department. I know his feeding issues will take a long time to be resolved, but if we could just get him to outgrow this God forsaken reflux, it'd be a HUGE leap in the right direction.

And without further ado- pictures!

See my teefers?



My two favorite toys in the whole wide world- a tube of Aquaphor & a travel pack of Q-tips.



Can I have the camera, mommy?



Mmm, tasty fingers.



It's a Robbie-In-A-Box!



How cute am I?



Standing at the couch.



At Gavin's birthday party.



Giggly boy




--Trish