Posts Tagged ‘baby’

The good news is G is still off the vent.  However, she’s at 4 litres of oxygen, at 60 percent. (Room air is about 21 percent for reference.) The doctor did say this morning that as long as her blood gas (the CO2 level specifically) was good, they would not reintubate her. So, here’s hoping it stays good.

She’s not tolerating weaning down at all. It concerns me. I also noticed on her most recent growth chart that her head circumference had fallen down on the charts. Now that can be explained by different people doing the measuring, but still… If I’m recalling correctly, microcephaly can have an association with PVNH. Microcephaly is generally linked with severe developmental delays and other problems to boot. So, please let the person measuring G’s head simply have been an idiot who can’t do a head circumference correctly.

G is in the 90th percentile for length! A whopping 23.3 inches.  She’s about 40th percentile for weight, coming in at a grand 9 lbs, 12 oz.  She looks chunky!! It kind of doesn’t make sense that she seems to be struggling so hard, but she’s gaining weight like a champ. Then again, they are giving her 80ml (or 2 and 2/3rds of an ounce) every 3 hours. But that does mean a couple things.

1.)    G can’t be too allergic to soy/dairy if she’s gaining weight like this.

2.)    My milk is doing a fantastic job of providing the calories she needs.

3.)    I should have told the doctors who told me I couldn’t breastfeed L to suck it!

She’s still receiving sodium chloride to assist with raising the sodium level in her blood. I don’t know how long that’s going to continue for.

Oh, and she’s taking caffeine. This irritates me. You know why this irritates me? Because I brought up using caffeine on her WEEKS ago, and was told no. That they hardly ever do that. That there’s no way they’d send a baby home on it. Uh… lo and behold, they’ve got her on caffeine, and have already said she’d probably come home on it.

I feel like its another case of “Lets not take the mom seriously. After all, she doesn’t know what she’s talking about. She doesn’t have a medical degree.” As near as I can remember, I have called almost every bloody thing at least a day before they did! The only things I didn’t have a clue about where her co2 and sodium levels, along with the brain malformation.

Grrrr.

…..

Anyways, you know what one of the most horrible feelings is? When you’re trying to pump, but you haven’t had time to grab anything to drink, so you know you’re dehydrated.  Then you’re trapped in your daughter’s room, which is in isolation, so its not like you can just jet out to get something to drink. Plus you’re waiting on the doctors to show up for rounds, so it’s a matter of how long you actually have before you have to do a frantic disconnect-and-tuck so you can be at the doorway listening to them. Half the time I get this look like “Eh..you didn’t have to be right here. You could have listened from over there..” Yes, I could have, but no, I won’t. My kid. I have a role in her treatment. Flat-out. I wanna know everything, even if its amazingly hard to handle sometimes.

And it is. I wish I could just blindly place faith in the doctors, but I can’t. I won’t. I refuse to be the little sheeple person who sits back and doesn’t even bother to educate herself to prepare for things. When you have an ill child, it is your responsibility to learn everything you can. To participate in any way you can.

You really are your child’s best advocate. You are the only one who really, really knows your child. And maybe its wrong of me, but I’m going to even say that in 95 percent of cases, the mother is the best advocate, because I think we notice more than the fathers do. Now there’s always crappy moms and stuff like that, so it doesn’t always apply, obviously.

Today is not a good day. Today is a ‘I feel like this is hopeless’ day. I honestly wonder if I’m ever going to bring my baby home. And if I do…am I just bringing her home to die? You wouldn’t believe how much that tears me up just to think about it.

Oh… yeah… I’m going to do a separate post about Religion. Its not going to be nice, so if you are a bible-thumper with a righteous indignation fire easily burned under your rear… don’t read it.

Advertisements

So, I had a good friend – H – come up to visit today. She drove clear from Georgia, so it was a pretty special occasion. I think G must have sensed that because…

Image

About ten minutes after we were there, they successfully extubated G! That’s right, ladies and gents, G is off life-support!

She’s on a really high flow of o2 for a little tyke – 3 litres, to be precise – but she is OFF. THE. VENT!

..and, as you can see, she even opened her eyes for a little bit =)

PLUS – on top of that – H confirmed that she did think that G does have at least some hearing and eyesight! I think she does too. I’m not sure how good it is – but there’s gotta be something there! When we were passing the mobile over the crib, her eyes flicked to it, and she tried to turn her head in the direction it was going. When I was talking to H and to G, at certain changes in tone – G’s eyes would open, or she would at least move a bit more. She would also react when her monitors beeped!

Also, because G’s bum is so sensitive that the Huggies diapers are just not cutting it, the NICU said we could cloth diaper! =) =) We’ve got to make a list of instructions, bring in a wetbag,clothies, and one that will never be used for anything but weighing purposes – and they will use them on her! I’m hoping it really helps her bum. Its not broken out yet, but it looks so red and irritated.

So far, today has been freaking…

AWESOME!!

My initial thought as I go to type this out is ‘why would anyone that’s reading this NOT have had their baby tested already?” but I know that isn’t fair to think. Many people aren’t aware of how important or even how easy this test is. Its also cheap, to boot!! So I’m going to spell it out, and I’m probably going to repeat myself a bit. I’ve found that repetition helps drive the point home.

I’m not going to use technical terms. I’m going to make this nice and simple.

Pulse Oximetry Screening = Pulse Ox Test

Why is it important? Its important because the most common birth defect is a congenital heart defect (CHDs)and the pulse ox test is the first step towards detecting many CHDs. CHDs affect roughly every 1 in 125 kids born in the USA ( www.marchofdimes.com ). It can also detect some lung problems, too. (Think about it this way – it measures the level of oxygen in your blood, and your heart and lungs are both involved in making sure you have plenty of oxygen in your blood. So if something is wrong with your heart or lungs, and therefore you’re not getting enough oxygen to all parts of your body… the pulse ox test can help pick up on that.) It is not 100 percent accurate, but its still very effective.

What is it? Its a test that measures the level of oxygen in your blood. This level is called ‘saturation’. I will probably call it ‘sat(s)’ a few times in this post.

Your blood cells transport the oxygen to all the areas of your body. Without oxygen, bad things happen, right? So you need to have X amount of oxygen going through your body at all times to make sure that everything can work the way it needs to work! The pulse ox test measures that “x” and gives the doctor an idea of if your blood cells are able to carry oxygen like they should be.

So, they probably have to give my child a needle poke, right? They do that for a lot of other tests… No. The pulse ox test is about as invasive as sticking a thermometer under your arm pit to take your temperature. What happens is simple.

(Infants) They take this little thing that looks like a band-aid, which has a red light-emitting sensor in the middle of it, and wrap it around your baby’s hand or foot. The light from the sensor shines into the baby’s hand/foot, and they need the baby to hold still for like a minute (which can be achieved via swaddling if nothing else). The sensor instantly starts detecting the oxygen level in your baby’s blood. When they get the reading, they take the ‘band-aid’ off the baby’s foot and you’re done! Its just that easy!

from flickr.com

Dark shot of pediatric pulse oximeter around child’s foot

 

(Older kids) They use a fingertip monitor and your kiddo sticks his/her finger into it. Its padded, it doesn’t hurt. It operates the same way the above mentioned ‘band-aid’ works, but your kid is older and can be expected to be able to hold their hand still for a few seconds, so they don’t need to tape it on. They get the reading, they take the probe off the child’s finger, and you’re done! Could it be any more simple or less scary sounding? (This is how they test adults too, by the way.)

From wikimedia.org

They might look a little different, but this is it basically..

How much does it cost? Because if its not a required test, I’ll probably have to pay for it…

From http://www.cdc.gov/ncbddd/pediatricgenetics/pulse.html

Costs of pulse oximetry screening include screening equipment, supplies associated with screening (e.g., probes, adhesive wraps), and staff time needed to perform screening and track results.

  • Screening has been estimated to cost less than $15.00 per infant.

 

You might have to pay more than that if billing is being a jerk, but… consider this:  Even if it cost fifty dollars… fifty dollars  to potentially save your kiddo’s life versus a couple thousand  to bury him/her.  Which one would you prefer? (I pray you didn’t have to actually think about that one…)

How do I ask for it in the hospital? I recommend that you actually call ahead of time to the hospital you are going to deliver at (you have 9 months to do it…) and ask if it is standard practice.  Also, discuss it with your OBGYN or CNM. Make sure he/she knows that you insist on the test being done. Last: if you have a written birth plan then write it down!

What if  I forgot to ask for it in the hospital, or didn’t know to ask for it? What if I’m not sure if it was done or not? I will give you the same answer for all three. The next time you go to the pediatrician, ask for a pulse ox test to be done. Your pediatrician might say that its standard procedure to have it done at whatever hospital you delivered at. I would ask to have it done again anyways. Just so you know that everything is okay. Sometimes standard procedures become so routine that things can get missed by the people who do them over and over and over again.

What if I ask, but my pediatrician says no. That they only do it on sick kids, or kids who have a family history of a problem. (One of my mommy friends actually had this excuse given to her…) Slap him. Kick him in the manly bits. Tell him he’s a flipping idiot. If your pediatrician is a butthole, which can happen, I would skip straight to “If you don’t do it at my request, and my child would happen to fall seriously ill or die from an undetected heart or lung defect that could have been picked up by this test, I will sue you for every dime you make for the rest of your life and I will make sure everyone knows that you said no to a test that could have saved my baby’s life!” and then I’d probably find another pediatrician, because you don’t need a butthole taking care of your kids.

However, if your pediatrician is reasonable, then I would simply say that “I know  that sometimes just because children don’t look sick, that doesn’t mean that they aren’t sick. I know CHDs are the most common defect, and that even if I don’t have a history of it in my family, that doesn’t mean my kid is perfectly in the clear.” Some variation thereof, and if your pediatrician has two brain cells to rub together, they will do the test.

What if my pediatrician’s office doesn’t have a pulse ox test machine available? ARE THEY STUPID?! Okay, seriously, while I will always recommend that you have the test done by a medical professional, the truth is the pulse ox monitoring is so simple that you can buy a tester off the internet and do it yourself for about $60.00! I did a quick Google for ‘pediatric pulse oximeters’. This is one of the first links that showed up. http://www.walgreens.com/store/c/choicemmed-children-oxywatch-c53-fingertip-pulse-oximeter/ID=prod6060764-product?ext=gooPersonal_Care_PLA_Oximeters_prod6060764_pla&adtype={adtype}&kpid=prod6060764&sst=1fd5b48a-4ac6-a308-82d6-00006ea0c12c

I’m well known among my friends for being a bit of a pushy broad about the pulse ox testing. I have outright told my facebook friends that “If you know me, then you know L’s story. If you know L’s story, if you’ve heard me speak on the importance of pulse ox testing, and you do NOT get it done… if you know someone who is pregnant and you don’t tell her how important it is to get it done..if you don’t spread the word to people who need to hear it… and something happens to that baby that could have been prevented if they had known to ask for a pulse oximetry test then its on YOU. You will have that guilt. YOU could have potentially saved a life.”

So now that you’ve read this and know how easy and quick it is… Its on you.