Archive for the ‘health & wellness’ Category
Baby in the hospital
Notes from Jake’s hospital stay:
A friend posted this for me to my mama group on Wednesday, August 13:
*Update from Betsy*
( I totally should have taken notes, I’ll try to get this right)I just got off the phone with Betsy- after three big doses of fluid Jake is definitely more perky, but this flu bug is turning into LOTS of testing and concern at the hospital. There’s a gastro…DR. involved and he’s having Jake tested for all sorts of things, even Cystic Fibrosis. Jakes Liver count was off a little and his thyroid was a little low. So the poor bub’s been poke and prodded tons and tons with blood tests etc.. It could be nothing, just genetics, or, even without presenting any other symptoms he could have some sort of mal-absorption issue. The doctors are concerned because Jake is So far off the bottom of the charts. Again- could be just his unique genetics (we hope so of course,) but they want to rule out anything else.
Betsy and Scott are tag teaming at the hospital and her girls are staying with their father, who had just texted Betsy to inform her that now Mira is sick with a cold.
Betsy got VERY little sleep last night, so Scott’ll stay there with Jake tonight while she goes home and tries to get some sleep. The good news is that he hasn’t thrown up in almost 24 hours and he’s nursing just about every hour. Betsy has been updating her facebook and flickr accounts from her iPhone so you can check those out if you like, I don’t have a link to them, but the post above has her flickr account link. She said she had this long post for us all texted out this morning and it got lost!
Me, on Thursday, August 14: Sorry for the lack of email updates – turns out the hospital doesn’t have wireless access. Thank HEAVENS for the iphone so I’m not completely cut off. However, I lost a long update message I have typed up on it yesterday (which is a huge time/effort investment on any phone lol) and I was so discouraged I didn’t have the heart to do it all over again).
Thank you for this thread, Amy and thank you for posting updates for me, Alissa!!! Oh, and thank you Molly for posting that photo – I’m so glad you did that. It’s so awesome to see him getting back to himself after DAYS of being just… no smiles, no laughs, no chatter, no interest in toys/books, etc..
Anyway, Jake has been making great progress – a new baby now that he is rehydrated. But his progress is slow. He’s nursing like crazy (like a newborn – every hour, 30 min at a time). A lot of comfort sucking, tho – my supply isn’t high since he has so many solids normally.
He’s not ready for solids, though. We tried some yesterday and he vomited last night again around 10 pm. I was devastated. We were naively thinking maybe he would be home by tonight, but now I realize that is so very unlikely. ( We’ll probably be there until the weekend, if not *through* the weekend. He has to be completely normal in the eating, peeing/pooping department before I have any desire for that IV to be removed. The trauma of having it inserted was too hard to contemplate going through that again.
And as hard as the hospital is on all of us, I know when he vomited last night and I was sobbing, I was also thinking thank god he’s here with that IV so that he won’t get dehydrated. It took 3 boluses to get him hydrated. He was in a pretty sad state and it scared me to death.
There’s more… as you all know Jake is less than 3rd percentile for weight (25-50th for length). Aside from a cold or two, he has always been in perfect, perfect health until this week. However, the doctors are convinced that something is medically wrong with him that is causing him to be small.
Based on Scott’s personal and family history (and mine!) we think that while Jake is a statistical outlier on the charts of the general population, he’s pretty much average on the curve of Bailey men. The gastroenterologist brought in to consult disagrees. He feels 99% sure (based on Jake’s weight for age) that there is something wrong and that’s what is causing his weight to be so low. So Jake has had lots of extra blood drawn for testing and had a cystic fibrosis test last night (pray! vibes!) to see if they can identify a problem. I’m so worried about my little guy on many levels. And exhausted from advocating/being treated like an idiot/navigating the system.
His thyroid is a little low and bilirubin is elevated. The panels could be all fubar from his extreme dehydration, though, so I’m not investing much worry into them until they can run them again on a HEALTHY baby. They say the thyroid wouldn’t be affected by the dehydration, and that may well be, but the guy is definitely not chronically hypothyroid as identified by the symptoms list – he doesn’t have ONE SINGLE symptom of hypothyroid. They are looking and looking for symptoms. I think they think I’m lying when I say he doesn’t have excema or constant GI problems. “Are you SURE he doesn’t have diarrhea? no funny rashes?? etc etc.”
I’m home right now. I had only 1.5 hours sleep in a 60 hour period and I was a sobbing mess last night, so Scott sent me home to catch up on sleep. The alarm woke me up after 7 solid hours.
You know how you have a bad dream and you’re so relieved when you wake up and it’s not real? I had the exact opposite experience this morning. My house is empty and lonely. I miss my girls and my normal life. But at least I got a good night’s sleep – I feel much, much better. I haven’t called Scott yet – I don’t want to wake him up if he’s lucky enough to be asleep. Poor guy, I hope he was able to get SOME sleep last night.
I hope Jakey is well enough to be home soon. He is certainly chipper enough on the IV (good times, good times – constantly disentangling an active baby from his IV line).
So I’m hopping into the shower and headed back to see my baby. I hope he’s hungry. Especially for nummies. 
)
Thank you all so much for your well wishes. Please keep them coming!!!!
XOXO
Update on Jake’s lab work
NORMAL. Yay. 
Is the ‘Mom Job’ Really Necessary?
Post-pregnancy bodies marketed as pathology. How depressing.
Is the 'Mom Job' Really Necessary?
- New York Times
In 1970, “Our Bodies, Ourselves,” the seminal guide to women’s health, described the cosmetic changes that can happen during and after pregnancy simply as phenomena. But now narrowing beauty norms are recasting the transformations of motherhood as stigma.
These unforgiving standards are the offspring of pop culture and technology, a union that treats biological changes as if they were as optional as hair color.
And note: It's the marketing of elective cosmetic surgery to perfectly healthy women I take issue with… (not the existence of the option or the decision some women make about it).
Aggressively marketing some ridiculous ideal to postpartum women, however, is super ick.
As far as me, personally, a few years following three pregnancies and four total years of breastfeeding, I flirted with the idea of a breast lift and augmentation. I didn't like the message that sent to my girls, though, and I couldn't think of any acceptable explanation to give them later…
Vox Hunt: Yeah, About This Thing…
Show us something weird that's on your desk.
Submitted by Alex.
That would be an AcuLight Expansion Screw Key – two of 'em even – which the orthodontist provided for use with HM's and Mir's palate expanders (which where installed yesterday morning).
Every other day for six weeks I have to insert the key in the tiny hole in their expanders, turning the screw one-half turn. So far, I have done this once per child and both times the key slipped out of the screw and – with some force – I ended up jamming that skinny piece of metal into the roof of their mouths!!!
My poor babies. I felt awful the first time, when I did this to HM. And I was oh-so-careful with Mir, afraid of doing the same thing again… and then I did it – AGAIN! No lasting damage. A small scrape. But geez, they are already so uncomfortable getting used to this appliance in their mouths. My poor babies.
Now I'm terrified about my next attempt! I can't believe there are even any issues – after all I had one of these myself when I was an adult (and did my own expanding). The key NEVER slipped out. WTF? I guess it's because the mechanisms are new and stiff? I hope this doesn't happen again.
Anyway, they're both talking funny and eating around them is no joy as they try to re-learn swallowing without access to the roof of their mouths (amazingly tricky until you get the hang of it!).
But the good news is: They can't suck their thumbs! Hopefully 10 months of that will break them of the habit well and forever.
The face of autism
I love these videos my bestest friend and biz partner made to celebrate her little boy, age 5, who has autism. He is just AMAZING!
Here's the story — well, the first five years — in the life of Quinn: a wonderful, exuberant, mostly non-verbal boy with autism. You can see how the signs appeared over time, even before his diagnosis was made at 21 months. Music from Rob Dickinson/Catherine Wheel (www.RobDickinson.com)
A 5-year-old boy with autism, chased around with a video camera to capture some of the things he writes. (Quinn thinks this video is *hilarious* — has me play the Pixar scene over and over for him.)
Orthodontia, brain training and baby, oh my!
What a busy (expensive!) month we have shaping up in January.
First, a new baby. A new baby 7 years after the last one, at that. I have NOTHING. Starting all over again. I think I’m relatively a minimalist when it comes to baby gear (will skip the whole nursery thing completely – baby will cosleep at least the first 9-12 months), but still, one needs maternity clothes, baby clothes, car seats and other essentials. Fortunately, we have months to save and plan for most of those needs. I’ll need maternity clothes soon, but I work from home – that helps!
Plus there’s the midwifery care. Insurance won’t cover. Long story. Prenatal care (and the monthly payments) with my midwife starts in mid-January.
Teeth. Then, two of my daughters (ages 6 and 9) require orthodontia. Crossbites, both of them, and my six year old has a scary open bite (it looks a lot like this). In January we will begin their treatment… both of them are signed up for palate expanders and an interesting device called a bluegrass appliance (that’s a picture of it on the right). The bluegrass is soldered onto the palate expander, so it will be like one, integrated, appliance. Fun!
The bluegrass serves a twofold purpose: In theory it will help prevent any further thumbsucking (of course any seriously motivated child would not be deterred) and it retrains the tongue to lie in the proper, healthy position. I guess thumbsucking trained their tongues to do all the wrong things, which is bad for upper jaw alignment. Insurance pays for half of this.
Brain training: Lastly, we’re beginning neurofeedback treatments for my 10 year old – also in… January! She was diagnosed with ADHD – Inattentive Type when she was seven. She has been on Adderall since (currently XR 15mg). Over the past several years, with lots of extra tutoring in math, she’s been able to hold her own. But it’s not enough – at the 5th grade level she’s having a really hard time keeping up. She seems to KNOW the material (i.e, she can manage her homework just fine, if very slowly), but falls apart under testing pressure.
Neurofeedback – when it works – effects a permanent retraining of the brain. In her case, it will help her train her brainwaves to accelerate when she needs to be focused (something the Adderall does for her now, but she probably needs her dosage increased and we’re trying to avoid that). Neurofeedback practitioners claim an 80-90% success rate with ADHD kids. And it’s supposed to work specifically in a way that helps kids succeed in math.
What are the risks? Well, there is no evidence that the treatment causes harm. From my research, it appears there is no risk that she will be hurt by trying this. So the primary risk is financial. Insurance doesn’t pay for it. What controlled studies there are showing efficacy are small. The larger studies are anecdotal. The risk is that it won’t work for our daughter and we’ll be throwing our money (significant dollars!) away. We’re operating on the theory that the potential benefit is so great that it’s worth taking the risk of losing money.
Ideally, the way this will go is that we’ll see some small improvements after just a few sessions, which will make it easy to commit more money to it. It all becomes more complicated if it takes lots more sessions to see any improvement. Wish her luck!!
Mom to 4 kids and 2 stepkids, I work at home in the heart of the chaos. Founder and executive editor of SheKnows.com and various other sites. Homeschooling. Knitter. Family chef. Gadget geek. Wordphreak. LAZY BLOGGER. 
