We interrupt our regularly scheduled programming so I can publicly tease my husband.
Sorry everyone, but I just have to do it. So, if you are looking for a post on prematurity, check back in a few days. If you want to stick around and see what I deal with on a daily basis... read on.
I should start by saying that I love my husband very much. I married my best friend almost 13 years ago, after dating for 3 years and getting to know him 5 years prior to dating. I can honestly say that I knew what I was getting in to.
That is, until he started working in an industry that is his passion.
Why is this bad you ask?
Unfortunately for our finances, hubby designs home theater systems (among other systems) for a large corporation that sells to installers. He loves his job and loves the technology. It is not uncommon for hubby to come home and say something like, "We are going to start carrying xyz brand of plasmas so I think I'm going to get one." (which, by the way, translates to "I really want one, can I have it?") He's been employed in this industry, in various forms, for 12 years. When he was transferred, we had a house built with a room in the walk out basement that was surrounded in cement-no windows-for his theater. We have speakers throughout our house with remotes that control all of them. Even our light switches can be controlled by remotes. We won't have a lock on our theather... we'll have a fingerprint reader! Want to ring our doorbell? You won't find one. You have to push a 'call' button that rings our phones. I can talk to the stranger on the other side of the door. (ok I love this one)
I thought I had heard it all.
The other evening hubby came out of his nightly shower and, with confidence, told me, "We need a television in the bathroom. I can get a good size LCD from work." I could tell that he had really thought this through and believed that he really *needed* one.
I must have had quite a look on my face because he quickly continued his argument (he was prepared for my opposition) by saying, "There's nothing to do in the shower. I can run the TV off of the satellite."
Nothing to do in the shower?! Was this seriously his best argument? I didn't know what to say. He was staring at me like he had just delivered the best convincing speech as to why he needed his new toy. If you have ever seen "A Christmas Story", the scene where Ralphy is turning in his theme on what he wanted for Christmas, and is smiling ear to ear with pride... that was my husband. He was lost in the moment.
I started laughing. The more he kept on delivering different reasons for his potential new purchase, the more I laughed. The more he was getting aggravated, the more I laughed.
He returned to the bathroom and I returned to working on my laptop, where I was paying bills. Yes, I was paying bills when he asked me for a television in the bathroom! That was his crucial mistake in his plight. I couldn't even figure out where I was going to get money to pay the huge medical bill from Paige's last GI test and he wants a television in the bathroom!
Poor hubby. He has to take a boring old shower every night and his wife won't let him have a television to watch.
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A community of people dedicated to the open discussion of the long term effects of prematurity.
Who... Me?
- ThePreemie Experiment
- I am the mother of 2 preemies. My daughter was born at 25.5 weeks and my son was born at 35.4 weeks. I am passionate about helping to educate others on the long term impacts of prematurity.
Prematurity Related Research
- Epicure-Neurologic and Developmental Disability at Six Years of Age after Extremely Preterm Birth
- Glucose Regulation in Adults With Very Low Birth Weight
- Neonatologists' Practices and Experiences in Arranging Retinopathy of Prematurity Screening Services
- Relationship Between White Matter Apparent Diffusion Coefficients in Preterm Infants at Term-Equivalent Age and Developmental Outcome at 2 Years
- Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant Outcomes
- Specific Language Difficulties and School Achievement in Children Born at 25 Weeks of Gestation or Less
- Stateman Article-Part Two
- Statesman Article-Part One
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20 comments:
To The Preemie Experiment:
Does your DH do any private consulting? We are trying to create a media room for Edward, and I am *so* not up on the latest technologies. Also, does DH know anywhere that we can purchase or repair a beta video player?
Ed is totally hooked on the beta recordings we made during his infancy and childhood of newscasts (some dating back to the Reagan era) and commercials.
We have tried turning the beta tapes into other formats, but something always gets lost in transmission. And anyone out there dealing with an autistic preemie knows that absolute perfection is the name of the game.
You *REALLY* have me laughing about this one! My DH is the same...gets a thought into his mind and convinces himself he simply cannot live without it.
The old saying about boys and their toys holds true....they just get more expensive! ;-)
I have always been afraid my husband is going to suggest a TV in full view of "the throne"
sce
Lol well if you were in the shower with him he would not be saying that there was nothing to do in the shower. ;) Your husband will probably be shocked that we have one old tv with no fancy technology and are cutting our cable at the start of this month which means all we will get is PBS.
I was going to say the same thing about what one might be able to do in the shower...but you got there first awesome mom.
Thanks for the lighter side this week preemie experiment. A nice balance to the rather 'unbalanced' comments coming out of Neo Doc weekend.
lol.. I'm laughing here because I have before now, got rid of the TV when things were not been done. God, I loved those months. At the beginning of this year, our TV went Kaput and I said no, no new TV. Hubbie agreed, so his boss gave him her old one.So, he got it into the house on technicality - ie: it'snot a NEW tv;it's her OLD one.
Currently, the TV is off limits until after 9.00pm. We have just gone back to Summer Time here in the UK so we are outside whilst we can!
Bloody hell, it's had enough to get things done at all let alone with a TV in the bathroom.
lmao
Helen,
Hubby would be happy to help! Email me the ideas of what you want Ed to be able to do in that room and hubby can suggest what can be done.
As far as fixing the beta machine, Yikes! The only suggestion that I have is to call your local college and see if anyone would want to take it on as a project. Maybe one of the professors would have an idea on which student would be up for the challenge.
SCE,
I hear ya! The set up hubby wanted to do was to mount the tv on a telescopic stand so it could be moved and positioned depending on where you are in the bathroom. So, the throne would be one optimal viewing spot!
Awesome Mom and Buddhist Mama,
I sure wish hubby and I could fit in the shower! When we had our house built we never paid attention to the bathroom plans. (learned our lesson there) Hubby was more concerned with the theater! I saw an exotic bathroom on a tv show and have been bugging him ever since. Unfortunately he's been working on getting our basement finished. We didn't want to have the builder charge us an absurd amount of money to do something that hubby could do himself. We learned our lesson there too since we've been in this house for over 2 years and the basement is still not done. Heck, we still don't even have any pictures on the walls yet! lol
Stacy
I never finished my original post. (I didn't want to make it too long)
But, after hubby came back out of the bathroom (after retreating to lick his wounds and re-group), he said something like, "well you don't understand. There isn't anything to do in the shower."
My laughing gave way to anger.
"There's nothing to do in there? Before your shower you get to sit, quietly, on the toilet, wihtout any kids wondering why it's taking you so long. You then take an hour long shower every evening without any children sitting on the bathroom floor. You wash your hair without wondering if you are going to be able to rinse before one of the kids is crying. You get to comb your hair without hearing the kids begging you for something. And, you get to do all of this without any time limits! I have an idea. I'll change shower times with you and we'll see how fast you can take your shower. You won't want a television in there because the only thing that would be on will be kid shows because they would be in there with you!"
He never said another word that night. The next day he came home and said that he decided that he wasn't going to get the television because he couldn't get the good deal on it that he thought he could get.
Ugh!
Buddhist Mama said "Thanks for the lighter side this week preemie experiment. A nice balance to the rather 'unbalanced' comments coming out of Neo Doc weekend."
I was appalled at what transpired over there. Appalled isn't even the right word but I'm still burning up over it that I cannot even think straight.
I don't care if someone feels differently than I do. Actually I wouldn't want to be around people who only felt the way that I do. As a culture, we wouln't learn that way. But, I sure don't want to be a part of something where people are allowed to be rude to someone with a different view. That whole thing made me sick.
When I first "met" Helen it was on a preemie group. I was new to the world and Paige was under a year old. She posted some research, in response to a parents questions, and a flood of people were rude and cruel. At the time I was still under the thought that ALL preemies "catch up by age 2" so I wasn't on the same page as Helen. But, I sure appreciated the "heads up" and was floored that parents were so mean.
When it was time to face reality, it was Helen that I turned to and was appreciative for the information she provided. It allowed me to be on more of a level playing field with the doctors, many of whom *I* was educating on the lasting effects of prematurity.
It's been over 8 years now and I still turn to Helen for unbiased information.
I know - the ND posts by the troll ERdoc are horrendous. Imagine having THAT doc (if he or she is in fact a doc) in the ER when you take your kid in for something - whew! Surprising that ND is tolerating that crap. Up until yesterday, it was civil and enlightening, this so-called doc has some serious personality disorder.
hilarious!! the things men come up with.
i have found your blog to be helpful in my healing process. while i don't get to be the parent of living children, ?luckily? our neo was straight up about the long-term effects of a grade IV ivh which unfortunately, both of our girls had (born at 24w5d).
To wannabe mom:
I just wrote a post about my son's life to another blog, he had grade 4 IVH, resulting, as it so often does, in hydrocephalus:
Our son has hydrocephalus, among other serious conditions, which causes him significant suffering.
Because of his retardation, he cannot understand the cause of his pain or its treatment, which seems to make everything much worse for him.
Our son’s life, all too often, has been a surgical marathon, with horrible pain and agonizing complications. I have recently had to hold him screaming and thrashing in my arms (he weighs 170 lbs now) while doctors force an NG tube into his nose and throat and stomach while blood spurts in a geyser from his mouth.
He has had numerous bouts of neurosurgery and resulting complications, requiring further surgery. He has been to the brink of death and back so many times. He is so scarred from his many operations that the neurosurgeons do not know if or where they can implant his next shunt. At times I feel that I am simply watching him die by inches.
He has his good days as well, but the bad days are so bad that I feel at times that I am being complicit in his torture. I could recite a long, long list of gruesome complications and procedures that he has to endure, beginning in the NICU with unanesthetized surgery, but I think you get the picture.
And what is truly discouraging is that many surviving preemies have it so much worse. Instead of *merely* 15 surgeries in a decade or two, they may have fifteen in a month.
As I said my son cannot understand what is being done to him. He cannot understand that this is for his own good. To him it must seem like brutal and random punishment (as it often does to me, as well.)
It is not simply a matter of moving on from my son’s diagnoses, as some have helpfully suggested. It is the relentless medical complications, pain, and the threat of them that wears us down, and 31 years into it things are worse, in many respects than when he was an infant and young child.
My son lives with a high level of fear of doctors, hospitals, headaches, or any symptom that might mean another hospitalization. And his fears are justified. It is hard to move beyond this.
We have learned, through difficult and painful experience, that a supportive environment and cultural acceptance can only do so much. There are some problems that all the love and money in the world can never fix or alleviate.
The “we” in the article I wrote [Making Lemonade, posted here earlier] refers to parents who have been through this hell, and years later, are able to reflect upon it with perspective. We all started out as you did, full of the early enthusiasms of special parenthood and with scorn for anyone who tried to tell us what lay ahead.
Many of you find my words difficult to accept and downright offensive, and to you, I’d like to say, get back to me in a decade, and let’s talk again then.
i didn't add that we made the most difficult, agonizing, heart wrenching decision to have our girls removed from their ventilators. i am grateful to our daughters' doc (and the two other docs we spoke to) for not sugar coating their condition.
How did you know what it was like when I took a shower? Men just do not get it some times.
They (men) wouldn't go through that. They would wait for you to get home, complain how they finally were going to get to shower and hand you the kid(s).
Cracks me up. I guess it is good we are cut from different cloths! ;-)
To wannabe mom:
When our son was born, the neo told us that he had 11 different problems any one of which could kill him, so "don't even hope."
We didn't hope, in fact we knew that survival might well be the worst terrible option for own son.
My family were all in agreement that his death would be for the best. One of my aunts, a devout Southern Baptist, even called us for permission to pray for Edward's quick and merciful death -- which we gave her.
However the days went by, and our son was still on maximum life-support. Then a huge bleed was detected (by pneumoencephalogram -- a hideous procedure, and, as always, done without pain relief).
The neonatologists called us in for a conference about taking Ed off the ventilator and we agreed.
However, the head neo wanted to wait until they had "weaned" Ed off the phenobarbitol that had been given for his seizures. I objected to this, since phenobarbital was the only (arguably) pain-relieveing med our son had been given.
I was assured by the neo that I shouldn't worry because "these babies don't feel pain like you or me."
When Ed was clear of phenobarb, we came to the hospital to hold him as he died. But that wasn't what happened. Instead, the staff had turned down a few settings to give Ed "only" CPAP and O2. And when Ed didn't fail as they had apparently expected, they dialed him back up again, and that was that.
Your neonatologists, by contrast, sound like humane and decent people.
Hello Preemie Experiment. I just wanted to send a little love your way. I hope you don't mind my stopping in. If you like bubble baths, I would have suggested negotiating at least a 1/2 hr. to soak in bubbles (alone) and watch your favorite show as you soak, while he takes care of the kids for you and you get some necessary R&R. Best to you, my friend.
I'm glad I found your blog. I'm LOL about this post, my DH is also in sound system design and we also have remotes for our lights, and he dreams of a theater room..... for now we just have a screen over our front living room window and a projector hidden among the other equipment on the media armoire.
As for the shower, we are remodelling the master suite with a shower built for 2, we shouldn't need a TV in there, LCD or no.
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