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Posts Tagged ‘preemie’

A. has a cough, and a cold, and I have a knot in my stomach that gets bigger every time he coughs.  It makes no sense that I would react this way; or it makes all the sense in the world, depending on how you look at it. It’s the end of the day and I’m exhausted from worry.  Fucking worry.

It is not really any different from any of the other coughs our sweet boy has had his first year of life. Why am I obsessing about this one? Ah, oh yeah, I guess I obsess about all of them. It just seems like he’s barely over one “innocent” cough/cold before he’s got another one! Do all babies get coughs this often?  For nearly every cough, we’ve called the after hours nurse line, or his pediatrician, asking if we should bring him in. They always say No, unless he:

a. is having chest refractions, and/or showing difficulty breathing

b. has a high fever and the cough is not getting better

c. is blue

d. is wheezing or making noises when he breathes

e. has the cough for more than 3 weeks

I know these things, I know what to look for, and yet loose grasp of their place in reality. Because I also know Maddie, and I also have lived through a three month NICU stay, complete with diagnoses of Respiratory Distress Syndrome and Bronchopulmonary Dysplasia. And then there’s “swine flu” on the radio. A lovely cocktail of anxiety.

Is he sick because I let him play in the water when it was possibly not hot enough out? (It seemed warm enough, but then the sun would go behind the clouds and the wind would blow…?..?)

While I find myself here, at this point in time,

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there is a part of me that is still here.

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What I want to know is, is there a part of my former preemie that is still here?

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Or is he good to go?

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Is this a “normal” cough? Are his lungs perfect now? He has not had a single infection, nor hospital stay, nor dose of oxygen or albuterol, nor antibiotics nor post-discharge breathing episode. He has not had RSV or pneumonia or bronchitis or bronchilococolitis (or whatever that cousin of bronchitis is called). A test last year revealed that he did get “paraflu,” the virus that can lead to “croup” but he did not get croup. But still, I worry. Thank god for wine, and thank god for the hour when it is acceptable to drink it.

Mister Finn never saw a pulmonologist post-discharge, because he did not come home on oxygen. But I wonder if I should get his pediatrician to write a referral for one so that we can have tests done to alleviate some worry? Do such tests exist?

This boy is the best thing in the world. I love him so much that sometimes it’s scary to think about how much I love him.

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Our sleep problems have evoked internet help of the professional sort, with Drs. Heather and Esther on board.  I have come down a bit from my panic-driven frenzy of desperately searching for any opinion other than my own regarding my son’s sleep habits, and Wifey and I are in the midst of making a “How our baby will go to sleep” plan. The plan may well be that there is no plan, but it will make us feel like we’re the ones in charge if we call it a plan.

The discussion with these Internets has shifted in focus from sleep training methods to A.’s preemieness, with both of these professionals agreeing that A., as a 27 weeker now 8 months (adjusted age), should not be treated the same way as an 8 month old born on his due date.  This is confusing to me, because the neonatologists and pediatricians we’ve seen have said the exact opposite; that we should at this point try to forget that he was born 3 months early. His pediatrician does forget, and we have to remind him (this is a man who rounds regularly at the NICU). His neonatologist refers to A. as a “former preemie.” Also, I’ve studied the behaviour of the other babies in our moms group, and have drawn my very scientific conclusion that A. acts just like them, within a wide range of personality types. Several of those babies have sleep issues as well. The only difference between A. and his little friends is that they were all born around his due date, and he was ripped from his cocoon three months early. Now, shouldn’t they all be at the same place developmentally? Isn’t this the whole point of the “adjusted age?”

Also a mystery to me is the concept that preemies have a harder time self-regulating than other babies of the same adjusted age. How? Why? We have a little 6 week old, full-term babyfriend who has a wretched time self-regulating, and is crying inconsolably whenever she’s not nursing or sleeping. Literally. Mister Finn never had that hard of a time. A bad day was when there was hard-to-console crying for more than 30 minutes at a stretch. He has always been fairly easy to console. (For the first three months (at home), the challenge was keeping him consoled, and that remains our problem come bedtime).

And, if former preemies shouldn’t be treated as full-term babies (of the same adjusted age), how should they be treated? When can they be treated the same way, if ever?

I worry that I’m sounding defensive here; but I’m not really feeling defensive, just perplexed. I will never forget that A. was born three months early, and I will never treat him as anyone other than the baby I had three months early.  I don’t think the way we treat him will change at all, really, based on the advice I have gotten/will get in this context, because frankly, I think we’re doing a good job. I do welcome advice and thoughts about this, especially from other moms, because I sincerely want to understand the way preemieness fits in with our culture of mothering.

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This past week A. has had a lot of preemie doctor action; that is, several appointments related to his preemieness. Even though we have been back to the hospital for a few low-stress visits since A. was discharged, this time I felt on the verge of a panic attack while going through the habitual motions of finding a parking space in the underground lot, walking through the lobby, taking the elevator to the sixth floor, walking the long hallway to the NICU. Last February through May, every time I got off the elevator to go to the NICU, I dreamed of showing healthy, big A. the colorful mural stretched across the hallway. And here we are 7 months later, with this healthy big squirmy boy.

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I am so grateful to be able to say that all of the appointments went well.  So so so grateful, and so aware of every little thing that had to go right in order for him to be healthy today.

Last Monday, A. had his 6 month (adjusted) physical therapy follow up, and the physical therapist was happy to find him in the 6-7 month range. Interestingly, she changed her tune since our last visit (at 3 months adjusted), during which I engaged her in a 30 minute philosophical conversation in response to her concern that A. was performing the appropriate tricks of a circus seal baby of his adjusted age, rather than his birth-date age. I did not understand why she was concerned, when all the doctors consistently state that it is the adjusted age, not the birth-date age, they go by.  We just went around in circles, misunderstanding each other.

PT:  Well, it is just because he is a preemie that he is delayed and needs to catch up to the other kids in his age group. But that will happen over time. It is my job to make sure he catches up.

Me: What strange language you use! “Delayed?” “Catch up?”  Isn’t he right on target for his adjusted age– that is, the age from his due date, which is the date that his developmental clock started ticking? We are in a “play group” with other babies the same age, and he acts exactly like them. Why do you think he should be acting like he’s three months older than other babies with their May due dates just because he was ripped from his cocoon early? Why do preemies get extra homework? Haven’t they had a hard enough time already? And isn’t it not a matter of “catching up”– but rather that three months doesn’t make as much of a difference the older the child gets?

PT: We want to see him catch up to his birth-date age.

Me: Why?

PT: Because that is when he was born.

This was all very confusing to me, as this was the first I’d heard of the birth-date age being the “real” developmental age. I spoke with A.’s former NICU nurses, doctors, and present pediatrician about our odd PT encounter and they all thought it was as Twilight Zone-ish as I did, which was encouraging.

So for this most recent appointment, we went into it with the agreement that we would let PT lady do her job, and then basically ignore her. But this time she was pleased as punch, even though he scored exactly within his adjusted age group, again.

Afterward we went down the hall to the NICU and were able to see A.’s primary nurse, Carol. Wifey and I were each struck by how A. interacted with her. It was as though he remembered her.

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This week, A. had his 6 month appointment with his main NICU neonatologist’s high risk follow up clinic.  It went really well. It was good to see Dr. Stoltz again, and he was really pleased to see A. all chubby and pretty. He doesn’t have any concerns about A.’s development. Grateful grateful grateful again.

And today we had our first visit from the Synagis Fairy. The season starts late in Seattle, and even later (by two weeks) if you have poor-people health insurance. This latter slice of reality was not met peacefully by me, but there was nothing I could do. But we rather liked the Synagis Fairy. She will visit us monthly through April.

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Of course, I don’t say this when I greet my neighbors. I say “Hi” like a normal person, and then when they reach to touch my baby with their friendly dirty germy paws, I say nothing (thinking WHY must you touch the baby?!)  because I can’t really believe it is happening (again), or I don’t want to take away from the friendly normalness of the moment by quickly shifting the topic away from how cute and healthy he is to CHRONIC LUNG DISEASE, DOOM.  On the days that I do feel up for The Speech, I say, as their hands alight on their jerky path of destruction, “Oh, yeah, you know, since he was born three months early his lungs are damaged from having to breathe oxygen three months too soon, so he will be sensitive to infection the first year or so of his life until he has grown new lung tissue– yeah isn’t that crazy?– they get all new lungs!  so we’re supposed to ask people not to touch him to try to keep him from getting sick, especially since it’s RSV season.”

Of course I only get through “Oh, yeah, y—” before they’ve mauled him. We live in a building teeming with baby-friendly artists, and plus it’s not only them– TOTAL STRANGERS at stoplights have touched his cheeks, which I know are irresistible, but do you see me fondling every fresh doughy croissant I see?

Wifey is going to make him a sign to put on his stroller, and we’re going to email all of our local friends and neighbors, and put a sign up in the mailroom of our sociable building, and keep socks on his hands which will be changed promptly if they are tainted, and, probably most obviously, we are going to have to pluck up the courage to be rude and bat people away with a stick. But that is much easier said than done, more so with friends and neighbors than total strangers.  It is either do all of these things or quarantine him. We are already not taking him into crowded places, but we are taking him into uncrowded places (like art galleries), on walks, to the odd appointment, and to our “mom’s group.”

One of the hardest things about all of this is that when I take him to our mom’s group he can’t play with the other babies. He has to sit in my lap and play with his own toy while everyone else rolls around on the communal blanket licking each other.

The End.

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Thank You

This married, gay, mama of a preemie wants to thank everyone who has been so vocal against California’s Proposition 8.

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