Monday, July 27, 2009

19 pounds

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.
video


--Trish

Saturday, July 25, 2009

Cease and Desist

This is a vent. Consider yourselves warned.

Do I seem stupid? Especially incompetent? Just plain lazy?

Because I swear, my family must think at least one of these things of me.

My grandma is in town with her sister. Tonight, the two of them, my dad, David, Robbie and I went to dinner. It was right at Robbie's dinner time, so I packed up the feeding pump and toted it with us. Usually if we're going out, I bolus feed him half at a time an hour apart, but he's been particularly pukey the last few days, so I was trying to take it as easy on him as I could. So I used the pump. That means there is a tube connected to him hanging and connected to a bag containing his pump and milk. My point is- it's pretty obvious.

We've firmly established that Robbie does not eat. Maybe 2 or 3 baby spoons of solids per day- if we're having a good day.

Then can someone tell me why everyone keeps trying to feed him?

Grandma asks if I want one of her carrots for him.
Me: no thank you.
G: You sure?
me: He won't eat it, grandma.
G: you don't think so?
me: nope.
G: even if I mash it up?
me: He doesn't eat ANYTHING, grandma.
G: Oh. *looks disapproving*


Five minutes later

My dad: Want some of these mashed potatoes for him
me: no thanks
Dad: you sure?
me: No thank you, he's fine.
Dad: just offering.
me: I know. He's fine. He's being fed right now. He's okay.
Dad: well, if you wanted some..
me: HE'S FINE. I SWEAR HE ISN'T STARVING. He is being fed right now. If we overfill his belly, he will puke. If I give him something and he gags a little, he'll puke. He's FINE.

Everyone stares at me uncomfortably.

A few minutes later

Grandma: Trishy, do you think he's cold over there?
Me: He's sweating.
Grandma: OH.

Right at the end of dinner, Robbie started puking. Not surprising. He was wiggling around, leaning forward and playing while a feeding went in. So he heaved a few times. David and I cleaned up the puddles and wiped Robbie down. Robbie was fairly unaffected. He sort of cried out just before he heaved, but as soon as the offending milk was up, he was back to playing again. He pukes every single day of his life. He's very sadly used to it.

As we left, my aunt made a comment about Robbie "looking so sick." I said he wasn't sick. "He does this every day." She exclaimed, "OH!? REALLY?" Apparently I've been talking to walls when I tell them HE PUKES ALL THE TIME.


There were other little things. And it's constant. Every time Robbie makes so much as a squeak, my dad makes a joke. "See! He wants pepperoni pizza." "See, he wants some chicken wings." I know he's just trying to be funny, but it gets old. Yes, I'm sensitive about the food issue. I WISH he wanted a pepperoni pizza. If he'd eat it, believe me, I'd feed it to him.

Literally, if he gets a bread crumb to the back of his throat, he gags until he pukes. Stage 3 baby food? Same thing. The other day I tried to give him some turkey that was mashed a little too thickly- the minute it touched his tongue, he started gagging. He has texture issues.

For heaven's sake, we CUT A HOLE INTO HIS STOMACH AND PUT A TUBE THROUGH IT SO HE WOULDN'T STARVE TO DEATH. It was not an elective surgery. He has an EATING DISORDER.

They act like we just haven't found the right foods to feed him. If only I'd offer him a magic carrot, or pizza, or bananas or juice or whatever the thing is they're pushing this week, he'd be fine. Robbie doesn't have a problem. His mom is just too clueless to feed him properly.

Last night we went to Dai.ry Q.ueen for dinner. Someone mentioned getting ice cream. I said I couldn't have any because it's made with corn syrup. My dad says very excitedly "Robbie can have some!" Umm, no dad, actually he can't. Dad is insulted. "Why not?!" I explain that the reason I can't have the ice cream is because Robbie's reflux goes crazy when I have corn syrup in MY diet. Nevermind Robbie eating it directly.

"Oooooooooh." He accepts.

I didn't even get into the fact that Robbie wouldn't want it. HE DOESN'T LIKE FOOD.

Someday he will. I know this. While I don't like the situation as it stands, it's our life and I have to accept it. It will change someday in the future-probably a few years down the road. But for now, can we issue a cease and desist on the food pressure? I promise I'm not starving him on purpose. And I'm not too lazy to feed him. I try. I swear.

Thanks.

Trish


P.S. It wasn't just me. Even the uber-patient David was annoyed.

P.P.S. He broke 19 pounds tonight. He's not starving!

Tuesday, July 21, 2009

Pics

A very brief update on Robbie's blog but if all you want is pictures, you're in luck:


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

Friday, July 17, 2009

Toot Toot

Not a terribly exciting video, but my dad was complaining that I hadn't updated Robbie's blog in 6 days, so I uploaded a quick video to appease him.

And really, what day isn't better with a few Robbie smiles and giggles?

Robbie thinks "toot toot toot" is a funny noise, so I was trying to get him to giggle for the camera.

video

--Trish

Wednesday, July 15, 2009

Crystal Balls

It's funny how life's challenges don't really change.

Back in the trenches trying to conceive, I often wished for a crystal ball. Sure, the temperature taking and OPKs and mucus checking and drugs and shots and hot flashes and swollen overies and blank HPTs and periods and dildo-cams and raging hormones sucked, but if only I could look into my crystal ball and see a baby in my future, it is all worth it.

Of course, there never was a crystal ball. Even when I did get pregnant, I learned too quickly that pregnancy doesn't equal a baby.

I saw a psychic when I was pregnant the first time. She told me she saw three pregnancies and me holding a baby. Turns out she was right, but of course, I couldn't count on that. I had my "crystal ball" but I still didn't believe it.

Now I have Robbie. And man, was he worth it! But you know, he comes with complications. I once again find myself wishing for a crystal ball. I love him so much and just want the best things for him.

The not-meeting-milestones is frustrating and sometimes disappointing when I'm constantly asked if he's crawling or walking or talking or waving or clapping. People mean no harm, of course. And they're usually full of praise about how bright and happy he is, and of course, he's cute as a button. He wins people over immediately. But having to constantly say no and constantly explain his rough beginnings sometimes wears on me.

Watching him in therapy multiple times per week, having to "torture" him with stretches and exercises and practice eating every day is hard. No one wants to see their child unhappy. I obviously know it's good for him and it has to be done, but it's not pleasurable to hear him grunt and groan or whine and cry because he wants to know why we're doing this God awful thing to him again.

If only I had my crystal ball, to be able to look into it and see him running and jumping and laughing and playing. To see him talking and singing and driving me crazy with incessant questions. To know I'm torturing him for good reasons.

Instead, we just plug along and hope for the best. I don't know Robbie's future. I'm sure someday he'll do all of the above, but no one knows when. And of course, it doesn't really matter. I'll adore him no matter what.

But man, I sure find myself wishing for that crystal ball occasionally. Too bad my psychic passed away.

--Trish

Monday, July 13, 2009

Thank you sir, may I have another?

Last week I was talking to our chiropractor about Robbie's birth. He didn't really know the story and was asking some questions. After learning some of the details, he chuckled and said "So I guess you're done now, huh?"

And I was dumbfounded.

I hadn't been so flummoxed by a question about children since before getting pregnant with Robbie.

It always surprises me when people ask a stranger if they're going to have children. It's such a personal question; one fraught with emotions. I dreaded the question with all of my being when we were trying. Even after we were completely out of the closet and I'd answer "well, we're trying but...." I still hated it. Usually being honest about the question just lead to a myriad of assvice usually starting with "just relax.." and left me not just surprised at the question, but furious at the response.

I don't so much mind when people ask if we WANT to have more children. The answer to that is easy. Yes, we would like another child.

Will we HAVE another child? I can't answer that.

Will we TRY to have another child? Well, I can't answer that, either.

There are too many unknowns right now. My OB has been encouraging. Yes, I would be high risk from the beginning. She actually would send me to see a MFM pre-conception. Probably some form of blood thinner injection for the duration of a pregnancy. But she hasn't ruled it out.

There are more "normal" issues, too. Money is a big one. Our financial state definitely reflects an unplanned year off of work and far too many co-pays for doctor and hospital visits. Not only have we eaten through every cent of savings we had, but also lived on our credit cards as well. We will need to both pay off (or at least DOWN) some of that and rebuild our savings before we can even consider another child.

The risks are not small. The chances of me getting sick again are very, very high. Statistically it would happen later and less severely. But "later" might be 28 weeks instead of 26 and maybe next time I'd make it a few weeks before delivery instead of a few days. But it's entirely possible that we'd have another preemie. Forget dealing with all of that again- we'd get through it, just like we did last time. But is it fair to do it to another child? Robbie bears the scars of his NICU days in many ways. Sometimes I kiss his many small white-dotted IV scars and feel guilty that my body made them necessary. And Robbie had a fairly uneventful NICU stay, particularly for a 26 weeker. It could be worse next time.

And what ABOUT Robbie? I love him and wouldn't trade him for anything, but the simple fact is that he requires more than the average child. Therapy twice a week, probably more to come. At least one doctor appointment per week, usually two. Exercises multiple times per day. Never mind that every feeding takes at least 90 minutes to keep him from screaming in pain. Would having another child lessen my focus on him?

And the new baby? Would Robbie's needs keep me from being a proper parent to a 2nd child? Would having another just keep me from being a good parent to EITHER of them?

Of course, Robbie's newborn stage was not easy on my marriage, either. I'd like to think David would be more experienced and therefore more helpful if we had another, but I can't count on that. Could our marriage survive another newborn, especially if the new one also came early and had special needs?

But the fact remains that we would LIKE another. Someday. Certainly not soon, but I'm also not getting any younger. And with pre-e, sometimes sooner is better. There is a theory floating about that a first pregnancy (though it was my 3rd, but who's counting) with pre-e is almost like a vaccine again getting pre-e in a 2nd pregnancy. With a case as severe & early as mine, it's less so, but again, it should happen later and less severely. So time may be of the essence.

All of this went quickly through my mind when the doctor asked such a seemingly innocent question. "So you're done then, huh?"

The short answer? "uh, maybe. We don't know. We'll see.."


--Trish

Friday, July 10, 2009

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

Thursday, July 2, 2009

What happened?

I'm boring.
No no, don't give me the pity argument. I'm boring.

I was discussing sperm with a friend and it brought back the memory of the sperm cake I made a while back. Don't freak out. Sperm was the theme, not the ingredient. (FYI: "Sperm Cake" is one of google's most frequent searches that leads people to my blog. WHY would someone be googling sperm cake? I'm sure I don't want to know.)

Anyway, I wanted to show her the pictures, so I went back and found the post. And then I read it. And the one before it. And a few other around that time. And you know what? I was funny.

Yeah, I'm conceited, whatever. I was funny.
And now I'm boring.

Now, I might argue that I'd trade a sense of humor for Robbie, and it would be true. But seriously, I need to get a little bit of that back. I'm sure it's not specifically Robbie that has made me boring, but the fact that I'm at home all the time and I live and breathe a non-verbal 1 year old. There just isn't all that much to laugh about. Or at least, not much that translates well into a blog.

I could tell you funny poop stories all day, but again- somehow lost in translation.

If anyone sees my funny bone, capture it. There's a reward.

--Trish

Wednesday, July 1, 2009

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