Thursday, October 29, 2009

Hodge Podge (pics)

Murphy's Law: The lower your checking account balance, the greater the chance your car starts making a funny noise.

Robbie's pediatrician tells me if I hadn't stayed home with Robbie for a year, she shudders to think what would have happened. He needed me. I needed him. It needed to be done. But I'm not sure we will every financially recover.

David's car is acting up. Of course.

...


My MIL definitely set Robbie's eating backward. He has spent the last week crying upon laying eyes on a sippy cup, spoon or bowl. Daycare was shocked. Fortunately they were able to make feeding fun by doing a lot of cheering, and enlisting the other kids to do the same and have made up a little of the lost ground this week.

We could use some prayers that he goes back to, not really normal I guess, but at least where he was pre-MIL visit soon. He was enjoying eating to a degree. He would open his mouth and actively participate in the feeding, at least. Now he just cries and puts his hands over his face.

...


Robbie has yet another cold. When I took him to daycare on Monday a couple of the kids had a drippy nose. Robbie's started tonight. I hate germs.

...


We still can't get H1N1 shots around here. I'm considering chaining myself to the doors of the health dept until they release one of the 500 doses my county (yes, 500 doses for the whole damned county) FINALLY got this week. They tell me they still haven't decided how to distribute them yet. SERIOUSLY? The CDC has a protocol for who should get them first. They aren't doing anyone any damned good sitting on a shelf somewhere.

Cut a stressed out high-risk-preemie mom out, here!

...


Robbie did get approved for Synagis shots this year. We were very worried he wouldn't, but with his two wheezing episodes over the summer (and who knows how much effort from his pediatrician's office) he did get approved. He gets his first shot in a couple of weeks.

...


Enough of my rambling. How freaking cute is my kid?




Mommy got the coolest ballons for her birthday!



da da da da da da da da Bat man!



You're so silly!



I eat candy?



Help! Grandma's trying to steal me!


Stairway to Heaven, anyone?



Look how long my hair is getting.




The high chair rocks. It's just that crap that put on the tray that sucks.



Just let me go, grandpa. I'm ready to take off!



When I think about you, I touch myself....



Cheeeeeese!







Friday, October 23, 2009

Hanging in there

My MIL has been here Saturday. I've managed not to be snotty, I think. Robbie isn't eating any better than he ever has, of course. Honestly, most days he's eaten a little bit less. The first day she pushed him all day long and by the end of the night, if you so much as showed him a spoon or a cup, he'd cover his face with his hands.

I made it very clear that she needed to back off. I said it nicely, but had she continued at that pace, I would have gotten ugly. She seemed to accept that and has only made a few comments here or there that have gotten to me. I did get another lecture about how we need to "be persistent" and "just keep offering." I guess she really does think we just don't give him food. Even David is bewildered.

The best parts of the week were when she forgot to feed him solids both Monday & Tuesday afternoon, despite having a written schedule on the table. All of this insinuation about not feeding him, and then she really does it. I think I should get a cookie for refraining from being my usual passive-aggressive bitch self.

Of course, having another person living in your house for a week is always strange anyway. It doesn't matter who that person is. It means having to put a robe on instead of being naked, not necessarily farting right when the urge hits. So I'm certainly ready for the week to be over.

But it certainly hasn't been all bad. She really does adore Robbie and he reciprocates. She is immensely patient when it comes to entertaining him. She'll hold his hands and walk him through the house (his favorite activity)all day long. She has done some chores around the house (laundry, dishes.) She is fun to have around as long as she's not commenting on our parenting, which really is the majority of the time. And of course, it's a week when Robbie isn't in daycare, which means we don't have to pay and he's not exposed to germs.

Of course, even though he's not at daycare that hasn't kept us from what has become our weekly visit to the pediatrician. He's had ingrown toenails for about a year now. I try to keep them properly trimmed and goop them up with neosporin when they get red, but this week, they won. Both big toes started looking really ugly on Monday. I was hoping to win the war, but last night one of them started oozing some grossness, so we headed in to the doctor this morning.

She confirmed they are infected and said he needed antibiotics. I was caring for the toes themselves properly, but he needed oral antibiotics as well. She added that she doesn't see ingrown toenails in babies very often, but she has seen it before. She said it's definitely genetic and we discussed all the members of my family who have had issues. I apologized to Robbie for the bad genes.

Then I asked her to check his ears because he's been rubbing at them again. She checked them, and sure enough- another double ear infection.

Now, I know you're thinking "wait, didn't he get tubes last week?"
Well, the answer is no. He should have gotten them on Wednesday, but early Tuesday morning I checked on him and found that he was burning hot- About 102. His doctor swabbed him for strep and the flu. Fortunately both were negative. His throat was pretty irritated, but it was declared "just a virus" and he'd just have to wait it out. It only lasted about 36 hours, but that was enough to keep him from having the surgery. It's rescheduled for November 4th.

Even Dr. P seemed exasperated today. "When does he get the tubes again?" It's certainly abundantly clear that he does need them. Hopefully this round of antibiotics will take care of both his toes and his ears and then the tubes will offer us a longer term solution. We're all sick of antibiotics.

That's the state of things at our house. Overall, it's been a tiring week, but not all bad.

--Trish

Sunday, October 18, 2009

Running

He can't walk by himself yet, but he sure wishes he could.


video


--Trish

Thursday, October 15, 2009

Remembering our Angels

October 15 is Pregnancy & Infant Loss Remembrance Day.

In honor of this day, we are asked to light a candle.

Tonight I lit a candle and thought of my two angels.

I have two pieces of jewelry commemorating them. One is a necklace I bought with what should have been their birthstones, and a forget-me-knot. I wear it when I need to feel them closer to me.

The other is a bracelet made for me by a friend. It's a name bracelet with Robbie's name on it. But included are two small angel charms. She surprised me with the bracelet. I didn't design it myself. It meant more than me than words could ever express that she included those two angels.

It is a mother's greatest hope that her child will leave a mark on this Earth before departing for Heaven. Those two charms showed me that they did- not just in my life and my husband's, but in other's as well.

We miss you sweet angels.

--Trish







Sunday, October 11, 2009

Experts

The trouble with having anything "wrong" with you is that anyone who doesn't have it thinks they're an expert on it.

When we were trying to conceive, that meant that anyone who had ever conceived easily thought they were a fertility expert.

"Just relax."
"Why don't you get drunk and have him pull out? It worked for me."
"Have you tried putting your legs up after sex?"

It didn't matter how many times I explained that I could be comatose, my husband's sperm wouldn't swim any better, and yes, I've tried everything you could ever dream of to increase our chances. We have a MEDICAL PROBLEM. THINGS THAT NORMALLY WORK DON'T APPLY TO US. Having conceived a child makes you no more a fertility expert than not having cancer makes you an oncologist.

Now that we are parenting a child with special needs, that means everyone who has ever had a child thinks they know how to solve all of our problems. Well meaning people insist "he'll eat if he gets hungry enough." Never mind that he was literally starving for months on end and no, he most certainly wouldn't eat anyway.

And of course, everyone is certain it's a simple solution. "Have you offered him pudding/ice cream/cheerios/candy/donuts/pretty much anything a normal child would love?" The answer is almost always yes, of course we've tried that. But they just don't understand that it isn't about the food he's being offered. Neither is it about the time of day, or the spoon we use, or what chair he's in. He has a MEDICAL PROBLEM. There are no easy solutions.

He will outgrow it. Eventually. Maybe it'll be next month (doubtful, but hey, a mom can always hope) maybe it'll be next year, maybe it'll be a couple of years. No one has an answer. Believe me, I've asked everyone.

To date, Robbie's seen 3 OTs, 2 nutritionists, a SLP, a feeding team, and more doctors & nurses than I can even keep track of. For once in our lives, everyone agrees on one thing- everything that can be done is being done. It's just going to take time. Robbie is on his own path and he will get there when he's ready.

He's come a long way in the last few months. Three months ago, a "good day" meant he only threw up 5 times that day and he took 5 bites of solid food one time. These days, a good day might actually involve NO puke and 4 oz of solid food. We've even had a day or two where he's eaten 6 oz. That's not every day, by any means. The last couple of weeks, he's been averaging about 2 vomits per day and eating at least 2oz of food each day. Is it "normal?" No, of course not. But for Robbie- it's a HUGE improvement. For me, it feels not just like steps forward, but leaps. Not only can we get 2oz of food into him, but most days, he actually opens his mouth and participates in the feeding process.

Some days it backfires. Yesterday, for example, he was eating some applesauce like he really enjoyed it. He was through at least 2/3 of a container and he was slowing down. He started to turn his head, his way of telling me he was done. I thought "just one more bite" and gave it to him. It took about 3 seconds to realize my mistake. He gagged, and then the vomiting started. Back came probably half of what he'd just eaten. Fortunately it came up pretty easily and didn't choke him or come out of his nose. He didn't panic. If he's going to puke, that's the way you want it- quick and easy.

The worst are the pukes that just won't seem to stop. He can't catch his breath, it comes out of his nose. His eyes widen in panic and his arms flail, seeking help. You grab him and lean him forward, trying to help him get it up and out. He clings to you, unsure of what is happening or why, but needing comfort. Both of you end up covered in vomit.

But "the worst" spells are happening less frequently these days. They're not completely gone, but it's not happening daily, as it was for a number of months. I suspect the infrequency of "the worst" is leading to his improved eating. He's slowly starting to trust food... a little.

Drinking still isn't going well at all. Even a drop of milk on his tongue cues gagging. It's clearly a negative association, not a texture issue. He'll sip water from a sippy cup or more preferably, from my bottle or cup. Not enough to stay hydrated- a few mls at most, but still, it's something. He can swallow liquids, he just chooses not to.

I can genuinely look back even a few weeks and see the improvement, though. It's encouraging.

And I think that's part of why my feelings were so hurt when my MIL made a proposal to me last week.

I knew it wasn't going to go well because she started with "promise you won't get upset." Anything that starts with those words is pretty much guaranteed to upset you. This was no exception.

Basically, she wants to come stay with us for a week. That part is fine. I actually really like my MIL and she's really great with Robbie. She's a huge help when she's here, and is very rarely pushy or opinionated on any subject. She's a good listener and respectful of our decisions.

But then she went on. "I want spent the week working on his feeding and get him off those tube feeds."

I was confused. You think you can get him off tube feedings in a week? And I said as much. I told her she was more than welcome to come visit, but I wasn't sure what she thought she could do in a week that we, and an entire team of doctors and therapists, hadn't been able to do in a year.

"I just want to try."

Okay, fair enough. I told her she was welcome to try, but truly, not to get her hopes up because even if she could get him to willingly take as much nutrition by mouth as he requires, getting him to keep it all down is pretty unlikely. We have to run his tube feedings in very slowly to keep him to the minimal amount of vomit.

But she continued "well, I can be there all day to feed him every couple of hours." I explained that he's already fed every couple of hours. Then ran through his daily feeding schedule. She seemed surprised "Oh. I didn't know daycare would do that." I don't know what she thinks happens at daycare, but all the kids get breakfast, lunch & snacks. I added that I was home with him all day for more than a year and it still didn't make a difference.

And then she said the words that keep running through my mind. "Well, I can have the patience to get him to do it."

She. can have the patience. to make it work. You see, that's the problem. That's the reason he doesn't eat. It's not that he has a medical problem. It's not that he throws up a lot or was in pain for so long. It isn't a sensory issue that commonly plagues preemies. It's nothing to do with Robbie at all. It's because we... because I... am not PATIENT ENOUGH to feed him.

I tried really hard not to be insulted. Not to be hurt. Not to be angry. I was fairly quiet on the phone, really unsure of how to react to that. But after we hung up, I replayed the conversation in my head numerous times. And every single time, I got a little more hurt and a little more angry.

I'm used to people questioning if we'd offered him something tasty to eat. Surely if something tasted good enough he'd want it, right? But to imply that I'm just too impatient to feed him? I'm honestly just floored.

I keep trying to remember that my MIL would never upset me on purpose. She wouldn't. She's truly a good person. But when you have a car wreck, the victim's car is no less crushed because you hit them on accident. And my car is crushed.

I try to remember that me being lazy or incompetent would be easier to fix than Robbie having an actual medical problem, so it may be preferable to believe that. But I just can't be okay with being accused of not being patient enough to get him to eat.

And not just me. It's not as though I'm the only person who can't get him to eat or drink. Again, he's seen many "experts" and there's daycare, too. The daycare seems to be adept at getting the other children to eat. But we're all just too impatient to feed Robbie?

So I've been seething. As time goes on, my hurt is waning, but my temper is rising.

My husband laughed when I told him. "Let her come and try then. She'll see." And my first reaction was similar. She thinks she can ride in on a white horse and fix my fuck up? Let her.

But then I think about her trying to feed him all day. Trying to force food on him. I think of yesterday when I thought "just one more spoon" and then all of the vomit. I think of the look on his face when he reaches for me when he's gasping for air while emptying his hard-earned stomach contents all over himself. I think of how hard we've worked to get him to trust food just a little.

She insists she "just wants to help" and "just wants to DO something." But what if that something, that "help" sends him backward?

I don't think she would intentionally do so, of course. And I do think after a few rounds of panicked puking, she would quickly realize her mistake. And who knows, maybe she could make some progress. Maybe some focused effort on liquid drinking, for example, would help.

Ironically, patience is key. You can't force him, or you just end up with a crying, puking, food & drink refusing child. It's only through patience that we've come as far as we have.

And I truly don't think it would take her long to figure it out. She's not stubborn enough to push the issue just to be right. But I fear the damage will be done before she realizes it.

So I really don't know where to go from here. David wasn't much help on the issue. At first he said to let her come and figure it out herself, then said to tell her she can't feed him at all. Neither are really options. The former, I've already explained, the latter because she'll be with him all week- he has to eat at some point.

And David isn't one to negotiate things. He always says "you're the one with the problem, you handle it." So for now, I'm just licking my wounds and deliberating my options.

So far the only one that seems appealing is to pack our things and run away. If only I could find a commune full of families with non-eating children.

--Trish

Friday, October 9, 2009

NICU follow-up

So today was Robbie's NICU follow up evaluation.

I honestly struggled with the decision to even go. I hate evaluations. There is just no part of having your child judged that is fun. The fact that he's behind means it's going to be yet another opportunity to hear just where my kid sucks. Frankly, I know already. I know he's not crawling or walking or talking. And 95% of the time, I really don't care. I mean, obviously I care but I mean, not as it affects us day-to-day. I am far more focused on what he IS doing than what he's not. But these evaluations force me to focus on the negative.

If they benefitted Robbie in any way, it would be different. But they don't. We already have a team of therapists who see him regularly; nevermind the doctors. They benefit other children. And that's why I ultimately went. They gather the data from the graduates and hopefully learn from it and are able to improve their care for future preemies.

Getting there didn't go well. The timing was poor and the weather was worse, but we got there.

Then we waited. And waited. Our appointment was at 1, but we weren't called back until about 1:45. Since 1:00 is supposed to be lunch and naptime, I was already annoyed, now I was even more so. We go back and go straight to the therapy room. Normally the nurse checks you in first but I was informed things were "a little crazy" so they were taking people out of order. The next 30 minutes were spent with a PT & OT rushing through an evaluation. And yes, they were definitely rushing. I've been through this enough times to know it wasn't thorough.

Robbie wasn't thrilled. He rarely dislikes people, but he wasn't so keen on the therapists. And then they seemed to be choosing toys he didn't like. At one point, the PT put a small bunny figurine into a container, trying to see if he could get it out. The trouble was he didn't like the bunny figurine. He paid it no attention at all. So of course, he didn't go after it. Another time, she wanted him to put small blocks in a small hole. He was more interested in a Gerber Puff and with some prodding from me, she finally just let him put the Puff into the hole. He has the skill, he just didn't like her blocks. (Shortly thereafter, he also put about 6 of the small blocks in the hole as well.)

We then waited another twenty minutes to see the nurse. Robbie was starting to get tired-cranky. I was just plain irritable.

The nurse came in to weigh and measure him. (27 inches, 22lb 14 oz in clothes.) Then we waited again to see the neonatologist.

That was the part that I'm still trying to assess how I feel. It was a doctor who hadn't been part of Robbie's team in the NICU, but he was pretty friendly and would round in the evenings when he was on call, so we spoke a few times. I always liked him well enough.

He didn't interact with Robbie at all. He came in and started talking to me right away. Basically he said Robbie evaluated at 7 months for "motoring" and 11 months for cognition. The question was what that means. He said that with a 26 weeker with no brain bleed and no complications, he'd expect to see him closer to his adjusted age. He added that he'd expect him to see catch up to his real age between 3 & 3 1/2. But Robbie has had complications. The chronic reflux, even the couple of wheezing incidents and now the ear stuff all contribute to his challenges.

He said that his gut feeling is that Robbie WOULD catch up. He just doesn't know when. He said that it is possible that he won't. He may have "limited potential." He doesn't think that's the case. Simple from observing him (?) and seeing how alert, interactive, interested and engaged he is, he thinks he will overcome his delays. He thinks that I'm already doing everything that can be done for him and that things are going well.

On the one hand, it's nice to hear that he thinks he does have potential. On the other hand, it's never easy to hear that he thinks he also couldn't. I'm really, really trying to focus on a few things:

1) I really feel the evaluation was rushed and incomplete. Because of that, I think he evaluated lower than what he realistically should. This is backed up by the few "tests" I gave him when I got home showing that he can do some of the things he didn't do today.

2) The doctor also didn't really observe him and even with his limited observations, could see that Robbie is awesome.

3) My own gut feeling. I feel like he is making amazing strides lately and I have no reason to believe it won't continue. When I picture the future, I can see us struggling. I see us in therapy until he's 3, and I see us in IEP meetings in schools. But I see him as a late teenager as a happy, smiling, quick witted boy.

But, as usual, I have the post-evaluation slump. I hate it, but I've learned to just accept it. Wallow for a day and then just go back to it.

At least this time, the doctor didn't freak out that he won't ever speak. He did allude to speech issues because of his feeding slowness, but seemed quite content with my response that we'd already made a plan to start speech-language therapy at 16 months.

I'm still undecided if we'll go back to the next one. It's already set up for May. Once again, I wasn't consulted about a convenient day or time, simply handed a card. And once again, it's at 1:00 in the afternoon which for now is nap & lunch time. I'll decide when we're a little closer to time, I suppose. Maybe in the next 6 months I can work myself up for another crappy review. But if it were tomorrow, I'd opt out.


--Trish

Saturday, October 3, 2009

Quickie w/video

A quick note to say that Robbie has yet ANOTHER ear infection. He's now on round #4 of antibiotics in the last 8 weeks. He's finally off the breathing treatments, which is good, though.

The doc is having him take a full dose of aug.mentin for 5 days, then lowering to a maintenance dose all the way through his tube surgery (October 14) in the hopes that we kick this one and keep him infection free until then.

Man, this ear thing is tiring. I can only imagine how poor Robbie feels. Though you'd never know it. He did wake up pretty upset Wednesday night (which I've learned is a pretty good sign of another ear infection) and was pretty flushed that morning (just not seeming quite "right") but beyond that, he was happy and playing and perky just like always. I swear, he's freakishly good natured. He definitely didn't get that from me.

And another random video involving banging objects. He also went through a weeklong phase where saying "nanu nanu" and a slurping sound was hysterical. I always love it when something random starts cracking him up.

video

--Trish