Monthly Archives: February 2013

Clinic recap

Things started off so well. The first specialist we saw was the feeding/speech therapist. She’s the whole reason I wanted A in the clinic—everyone who is anyone (or who is raising anyone) agrees that she is, hands down, the best oral motor/feeding guru around. And impossible to get in to. Our conversation was pretty much like this:

 

Me: He really needs help. We’ve seen 2 speech therapists with EI, and frankly they’re useless. Our PT/OT is awesome, but I get frustrated spending our PT/OT time doing feeding, because he also needs to learn to crawl and, apparently, pick up a Cheerio and put it in his mouth (before I extract it in horror). (I haven’t blogged about his evaluations yet. I will. Suffice to say: really? Cheerios aren’t going anywhere near his mouth, thankyouverymuch.)

 

Her: Oh, you see Ms. PT/OT? I love her!

 

Me: So do we.

 

Her: Yeah, she’s one of like 3 people who know anything about feeding. I’m pretty picky when it comes to standards of care.

 

Me: Well, so am I.

 

Her: Great, well, I’ll refer you to myself and see you twice a month to start, maybe once a week or possibly even once a month, depending on how things go. Come in 3-4 weeks after his palate repair.

 

And then it was boring: dentists looking at his teeth and telling me his mouth looks fine so far, a social worker asking me if I am getting enough support, and would I like more information about anything, an ENT saying the ear we thought might be clogged is clear, but the other tube might have some dried wax in it, but everything else is fine, etc.

 

Then our handbasket decided hell seemed like a nice place to visit.

 

The craniofacial surgeon, Dr. S. He was ‘getting a cup of joe’ and then ‘we have no idea where he is’. Then he walks in and says, “Nice to meet you.” I explained that we’d actually met before, in August or September. He didn’t remember, and I’m not surprised. We waited over an hour for our appointment to see if Mr. A needed a helmet, and he took one look at him, declared him to be at the level of a 3-month-old developmentally (which, really? From a tired, cranky child who’s been waiting, you deduce this in one glance), didn’t even feel his sutures, and said, “He just has an odd head shape, no helmet needed”. He was, hand to God, in the room for less than 30 seconds.

 

Anyway, he briefly looked in A’s mouth and said his palate was unrepaired (I know) and V-shaped (everyone agrees on that now). He asked me when I would like to fix it. I said it was already scheduled, for March 25th. He got rather upset, and asked how on earth we could have scheduled it without even seeing him. I said his ENT was doing it. He was nonplussed. I guess he assumed he would be repairing it? Why, I have no clue. And it also, frankly, told me that not only did he not read A’s (extensive) medical record, he also didn’t look at our “important notes” section of the intake form, where I listed this very information.

 

He then asked me when A had last had a sleep study. (In the NICU, probably about a year ago exactly.) He asked me if he snores. (Yes.) He then said:

 

Well, you really should have one done. He probably has very bad obstructive sleep apnea, and it will get worse after the palate repair. Also, in typical kids with micrognathia, we see catch-up growth with the lower jaw. I don’t think we’re going to see that with your son. In fact, I think that, regardless of what the sleep study shows, you son should get a jaw distraction done before you even consider repairing his palate.

 

Any questions?

 

My heart just about stopped. He was shooing us out the door before I could decide whether to cry or not.

 

Jaw distraction has haunted us, taunted us. I thought, in January, that we had finally closed the door on it entirely.

 

This is longer than I thought it would be. So, to be continued, I suppose. I’m tired and blogging while I pump, and the well has run dry (in both senses) for the time being.

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Cleft Palate Clinic

We have our first visit to the craniofacial clinic today. Although we were originally referred (and even met with a surgeon from the clinic) at the hospital where I gave birth and the boys spent their first two weeks, the specialized children’s hospital Mr. A was transferred to and then spent nearly 2 more months chillin’ in their NICU…well, they decided that we just didn’t need to go.

Or something. I was told things like “politics” and “you’re already seeing an ENT, so…” and things that just didn’t add up. It slowly occured to me that they just didn’t want to waste precious time and resources on my son. Getting the official confirmation that yes, they thought he would die before he needed his palate repaired or any of the other services (feeding! for christ sake, FEEDING!) was the final kick in the pants to start this blog.

And now, in just over 6 hours, we go. They told me to expect 2-3 hours since it’s his first time, and that he might not meet with all the specialists. Let’s skip the dentist but NOT the SLP, ok?

Anyway, I’m nervous as all get out, and I’m not sure why.

And in a month exactly, he gets his palate repaired. Terrifying.

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Teeth Grinding

In addition to getting the measles-like rash from his MMR shot, Mr. A has also gotten his third tooth: top right center. He is putting it to use, grinding away. I have to say, when Mr. D (who currently has 7 teeth!) went through this phase, I hated it. And it’s still nails-on-a-chalkboard. But all I can think is: check out my man’s oral motor skills!!

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The Hardest Thing about Special Needs

Let me say up-front: I know we are lucky. 12 months ago (7 months ago, even), the hardest thing was keeping Mr. A alive. Now, the hardest thing is knowing if it’s enough.

It. Anything. Everything. Too much or not enough?

When we got A’s microarray results, all I wanted to know was: will he be happy? And no one could tell me, and believe me, we had reason to doubt. I am lucky, because I used to work with autistic children and learned to love fiercely those who will never. (Never what? Does it matter?) So when being told that my firstborn would never walk, talk, or potty train, it wasn’t the hardest thing to say: so fucking what.

For me, if I could not talk, I would be deeply unhappy. If I relied upon others for all matters of self-care, I would be humiliated. For Mr. A…well, right now he doesn’t care that I change his diapers. Will he ever? Abandoning the dreams I had for him (and his brother, who still carries those dreams in his blue eyes) before his birth wasn’t that hard. I wanted those things—playing basketball, riding a bike, making friends, having lovers, going to college, finding a fulfilling career, finding a life partner, all that—because that’s what I thought would make him happy. If he never needs any of that, so be it.

But this is where it’s hard, because who decides. I don’t want to hold him back. I don’t want to make him miserable demanding that he do things he will never do. To take the long view with Mr. D. (as far as I can tell, anyway), isn’t that difficult. I will make him miserable for a while, teaching him he doesn’t always get his way, has to learn to pick up after himself, must learn to read, write, mow the lawn, etc. I have a fairly good idea of the skill-set he will need to become a happy person at 18(ish). And as he grows, more and more decisions about things like this will be taken from my hands and placed into his own.

I simply do not know with Mr. A.

I do not doubt that he will walk. He does have some unusual anatomy, but I know he will do it. I just do not know when. Recently, I have begun to force him to sit more, in hopes of strengthening his core so that he can walk. And now I spend hours a day making him bare weight on his feet—sitting, in the exersaucer, leaning against the couch, against my legs or tummy, playing with his learning table. He doesn’t always like it. Sometimes he hates it.

What does it matter, if he walks at 2 or 4 or 6? At the heart, right now, I want him to be safe from Mr. D. D loves him. Loves him. But he is not gentle. We are trying. I am trying. I show how to gentle touch, on me, on his father, on the cats. He has learned to tap A rather strongly on the head (“patting” him), or to throw his whole weight on him in the sort of hug I cherish, but A does not. Mr. D is smart, for a one-year-old. But he is a one-year-old. He usually does not step or crawl on A accidentally. He just showers him with forceful love. He no longer goes for the eyes or tries to insert his entire fist into A’s mouth. We are making progress. But when A is sitting, he is safer. And if he were standing, if he could toddle away…that is my hope.

I do not know which will come first: for D to truly realize how he can hurt his brother and decide not to, even when I am not right-right there, or for A to learn to walk. I am pursuing both paths.

But how much to ask of A?

When Mr. A was almost 6 months, having spent more than half of that time hospitalized, I threw the Haberman bottle across the room. Enough was enough. He hated the Haberman, the Pidgeon, the long skinny one whose name I can never remember, the squeeze bottles, all of them. Hated hated hated. He was on nectar-thick milk. He hadn’t taken more than 5 mls since before he got his G-tube. Drinking from a bottle, I decided, was not a life-time skill. He can’t form suction, not with his cleft palate. He could get liquid into his mouth using all those special bottles and nipples, but it frightened him.

With good reason: he had nearly died, more than once, from liquids in his mouth and throat.

I decided to move straight to solids. He gets his nutrition from his G-tube, and we would work on swallowing using purees.

I think that was the right decision, but of course I am not sure. I do have doubts. Would he be eating more now if I never gave up the bottle? If I forced him through his panic, his breath-holding, his wild-eyed aspirating…would he eat now? Or would he have total oral aversion and hate me for doing that to him?

Should I put him in intensive physical therapy, so that I am not the one who holds him back by saying, “You are good enough as is”? Should I make him cry for four hours a day for 3 weeks, because it will be worth it in the end? Will it be worth it in the end?

How aggressive should I be, with speech and feeding once his palate is repaired? Should I teach him to fear unsafe situations or assume that I will always be by his side? How much is enough, for a child who is perfect right now?

How much is enough?

How can I know?

This is the hardest thing.

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In the beginning…

I read the notebook I kept on the boys, for the first time since writing the words on the pages.

It begins with each of their first and middle names, spelled in big letters. I wrote those before they took me back to the OR, so that everything would be spelled properly. Just in case.

Then: A—3 lb 12 oz, 17.25 inches, APGARS 6,7. Looked blue but then cried. Peed on nurse. “Worked” on him.
D—6 lb 12 oz, 19.5 inches, APGARS 7,8. Cried. Got footprints. I got to touch him.
Both to NICU.

Well, I suppose even then, it was there: Mr. A, strong and stubborn, but needing help. Mr. D, not quite normal (I got to touch him, not hold him), but enough that no one was worried. They felt calm enough to take his footprints.

The footprint issue bothered me for days. When I had to leave them upon discharge, I was hysterical for many reasons. One of them was that we never got A’s footprints. It felt like the ultrasound appointment when they told me he probably would not live, and then handed me pictures of only Baby B, his brother. (2nd opinion, and 3rd opinion ultrasounds all said the doctor was wrong. And indeed there was a computer error. But this was the first time anyone raised the issue of something being not quite right with Baby A…and then it vanished until his birth. Looked blue, but then cried.)

While I was recovering from my C-section, a neonatologist came in to talk to us. This was the first time I heard (although my husband already knew, but had *forgotten* to tell me), that A had a cleft palate. A “U-shaped cleft in back of palate” is what I have written. In subsequent weeks, there was much debate about whether it was a U-shaped or V-shaped palate (I still do not know, it looks pretty dang V-ish to me though), whether he had Pierre-Robin Sequence or not (his notes say “PRS-like”, so who knows), and whether the hard palate was at all involved (it’s not). The doctor also told me, which I knew, that he’d had apnea—he was working harder to breathe than he could sustain. Thus they gave him surfactant and intubated him. A chest X-ray revealed a pneumothorax, but it was gone on subsequent X-rays, so they think it might have just been a shadow. He was missing his gag reflex, which they hoped was from the sedation they’d given him for intubation. (It was not.) He got an ART line, an umbilical IV, and TPN. And I was told he had a square head and low ears.

Mr. D’s report was shorter. He had low blood glucose, so they gave him a scalp IV (could not get one in his umbilicus, or arms or feet) and some TPN. The end.

The notes go on. The first time D breastfed, the first time A gagged, the first time I held A (2/4/12 at 11 am, a few hours before I was discharged), amounts of milk pumped and given to each boy, moving rooms, under and not under lights and heaters, tubes and lines pulled or inserted…

Then they stop. I remember thinking it wasn’t good to be obsessing so much over the little details. It also hurt to know that D would be home soon, but then A would be all alone. And sometime, possibly the very day I stopped taking notes (2/8), we got A’s diagnosis. Welcomed to Holland (insert eye-roll here) by very poor bedside manner: the doctor told us of his deletion, but when I asked what it meant, proceeded to go on and on about how, even with typical kids, you just never know. Why, his own son had a learning disability, and who would have ever thought! He finally handed us a computer print-out, out of order, from Unique. It was folded in half and passed to us as if on the sly. He told us not to obsess about it, and then walked off.

Well. There you have it, I suppose.

Except not at all. A’s story, and D’s story, is so much more than that little notebook.

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Weighty Matters

The boys had their one-year well-check today. It went about how I expected.

Mr. D is a tall 31.5 inches (91%le—non-adjusted!) and a good-sized 23 lb 6 oz (56%). With his daddy’s head (47 cm, 67%) to round things out. Our pediatrician’s group recently moved buildings, and Mr. D was happy to help them discover which of their locked cabinets were actually not locked. I didn’t exactly turn him loose, but what with having twins and “Oh, sorry, our computers did something weird”, we were in Exam Room #3 for over 2 hours. (The bitterest part was waiting almost 40 minutes to get six—yes, six—pokes per boy. During what should have been nap time.) Anyway, everything about Mr. D. is just perfect, except for the fact that he sleeps in our bed, either attached to my boob or a bottle. He’s too big to eat all night long and is doing it for comfort, according to our pediatrician, and I do agree. She didn’t say we have to kick him out of the bed, but I know my husband is wanting to, and I’m beginning to think that, once he is night weaned, he will sleep better in the nursery.

My first-born, Mr. A. Well, I knew he’d lost weight. His height was a bit of a bummer, probably because he was mis-measured while inpatient last time (they got him at 28 inches, which did seem a bit much). He is 28.25 inches long, and in the 7%le. On the charts, like a big boy! This is the first time he has been more than his standard 2.25 inches shorter than his brother, a trend he had continued since birth. But oh well, maybe he’ll get back. He continues to be in the 0%le in weight, at 15 lb 4 oz. His head is also in the 0%le, at 43 cm. Because he is continuing to grow in both areas, and because he mimics the curve (except recently), just being a bit beneath it, the good news is, we have once again avoided the dreaded microcephaly and FTT labels.

Our pediatrician is on board with both my big plans for Mr. A’s tummy: we will keep him on his fortified breast-milk until his surgery (which is, after all, only 3 weeks past what should have been his due-date), and then we will transition him to the blended diet. Which is exactly what it sounds like: food put through the blender and then run through his tube. I plan on having his 24 oz of milk still be breast-milk, where Mr. D will be getting whole milk once he’s hit his due-date (unless I have extra, in which case we’ll see). She gave us a referral to a dietician, since she feels like striking the right balance between nutrients, calories, fluids, and sheer volume (A’s stomach is still small, and his reflux is still bad) is beyond her expertise. She also, and thank god, gave us a referral to an SLP. It’s time to be more aggressive in this area, particularly once his palate is repaired, particularly-particularly if insurance will pay for it.

We intend to milk Blue Cross for all they’re worth. They, in turn, continue to be total jerks, denying this, wanting more information about that, suggesting alternative this, blah blah blah. That’s a whole other post, though.

We will also be feeding Mr. A more, in hopes of gaining back that lost pound, and maybe even building up some reserves to get him through surgery.

On Wednesday, he had his annual evaluation (not the meeting, just the testing) with EI. That bummed me out. That’s another post again, but suffice to say for now that I hate how they don’t have a box for everything he DOES, and that it’s a 3-strike rule, and all those strikes can be related. Alas and whatever.

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Weight baring

Oh my god!!!! Very first time ever: Mr A stood up holding on to just my fingers! For almost a minute! And then did it again! So proud!!!!

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