*Can't Joshua have a shunt to drain the fluid?
Joshua's cele is only skin/membrane. There is not any cartilage or bone in his encephalocele. As far as I know a shunt would need to anchor to something. Also, at this point Joshua's situation is so precarious, I think inserting a needle or doing a surgery for a shunt would kill him. I do put a shunt into "heroic" territory. A shunt might give us more time, but it's not a fix - its a delay. If all the fluid was drained from his cele then we'd have tons of empty membranes flabbing around. Also, that fluid is serving (to some extent the CSF is serving as "bowling bumper pads"). Besides that it's never been an option with all our doctors and nurses - no one's ever mentioned it. And we've talked extensively...
*What did I use to up my production?
Fenugreek. It's an herb, I bought it form "Nature's Way" - which I remember seeing in lots of health shops/GNC type stores in the USA. DO NOT get the Fenugreek with Thyme as Thyme is not recommended for nursing mothers. Pair this with breastfeeding and then pumping (manual or electric) after nursing so as to ensure the body is completely empty. The body will respond to making as much as is needed. Sarah - tell your friend to hang in there! Doctors paint really horrendous pictures when babies don't gain weight. But a slow weight gain is not going to give them brain damage or something serious like that! (Slow weight gain, not weight loss... that's a problem). Take Fenugreek 3 capsules (600mg each I think) 3x a day (9 a day).
Showing posts with label Joshua. Show all posts
Showing posts with label Joshua. Show all posts
Tuesday, March 11, 2008
Monday, March 3, 2008
Day 57
Just a note to let everyone know that we're doing well. We're in Tauranga again today - for meetings. It's pouring rain, so poor Joshua's buried in his carseat and covered in blankets. :)
I forgot a piece to my b*pump at home. Ugh. That's alright. And we have A) a showing at the house tomorrow afternoon B) friends staying with us tomorrow and the next 3 days. That's fine. Except that I didn't get a chance to clean yesterday and today. So tonight and tomorrow are going to be a whirlwind tour around the house. I think I'll put Oceana in front of Cinderella for a few hours.... haha. Oh well.
Joshua cried today for the first time. I nearly came out of my skin. He sounded like he needed to spit up some mucus/crud in his throat and couldn't. And then he pooped. Who knows what happened. He's fine now.
Xo!
I forgot a piece to my b*pump at home. Ugh. That's alright. And we have A) a showing at the house tomorrow afternoon B) friends staying with us tomorrow and the next 3 days. That's fine. Except that I didn't get a chance to clean yesterday and today. So tonight and tomorrow are going to be a whirlwind tour around the house. I think I'll put Oceana in front of Cinderella for a few hours.... haha. Oh well.
Joshua cried today for the first time. I nearly came out of my skin. He sounded like he needed to spit up some mucus/crud in his throat and couldn't. And then he pooped. Who knows what happened. He's fine now.
Xo!
Sunday, March 2, 2008
Day 56
Anybody want a slurpee?
Because Joshua Matthew Sams is...
Because Joshua Matthew Sams is...
That's right ladies and gentlemen! Joshua's 7lbs, 11oz. Another 7 ounces in 6 days. So that's 14 ounces in less than two weeks. Yay for him! Woohoo! That's actually over a pound in 3 weeks. He's growing!
He's doing well this morning. Eating again already. Pretty average day here, working on some office stuff, doing some newsletter stuff, figuring out what's ACTUALLY wrong with the camera, etc. Our friends Bryce, Christina, and Miles are (or should be) at the airport getting ready to fly to New Zealand this evening. Yay! They'll be here Wednesday (Tuesday for you). We're getting excited about their arrival. And I'm getting panicky about cleaning. Haha. Only because my mom packed all weekend, so the house is in shambles now. It WAS clean on Friday. But that was 3 days ago. Haha.
Hope all is well for you. Please pray for "prompt response" from a Dr. Schullinger we've contacted. I won't divulge the information and what we've asked him. But we'd like you pray with us for the quick reply. Thank you!
Day 55
What's the best way to tell if your camera is dying a slow and agonizing death? See if the pictures look like this. Good grief. Haha. We're going to get it checked out by someone, just to be sure it'd dead. Otherwise I think we're gonna make the leap and get a Canon Rebel XT (I know there's more letters and numbers to it, but darned if I can remember them).
The good news is that the video still works, so I took a short video of Joshua this afternoon and I'm gonna tryyyyy and get it loaded onto this post. If it's not on the bottom, you'll know it didn't work. Or else I've lost patience.
There's no Joshua news for today - except that we're doing a few days of cloth diapers. The diaper we like to buy (the cheap, but not useless) are in Tauranga only, and we go down again Tuesday. So I can handle a two days of cloth diapers. Haha. But like the champ he is, he pooped all over the only small cover I have. So we're trying the homemade cover and a too-big vinyl cover. I'm really cheap aren't I? Haha. You betcha!
Friday, February 29, 2008
Day 54
Joshua's cele looks good today, but there's a new spot leaking. It was originally 2 spots - one small, one large - then the small on healed. Now there's another spot (hard to see how large) open on t he end of it, so we've dressed it with the antibiotic ointment as well. He was very talkative today (not goo-goos, but sounds anyways) and very wide awake eyes today. He's fitting in newborn clothes - I know... good grief, here he is nearly 8 weeks old and just beginning to fit in them...
But they're already a bit short for him - which I only notice if I put him in sleepers. It's his legs that are long, not his body particularly. He's got unbelievable long limbs! How funny!
Oceana woke me up this morning when she was rubbing lotion (icky lotion that I don't want her to touch) into my back. I had put her in our bed around 6:15, but dozed for another hour. I'm stupid... We had to take a shower immediately afterwards coz she was covered in NASTINESS! What a fantastically fun way to wake up on Saturday morning.
Not much happening today - it's been pouring all day. We visited a friend. My mom is packing. I worked on some letters for local schools (Marine Reach letters) inviting them to our ship's send off in April and asking to do a presentation about children who don't get medical/dental care. Now I'm gonna go looking at rental properties online and then write a RAM (risk assessment and management) report for the city council for our send off. Blah. But the babies are sleeping - so get the work done while it's quiet!!!
But they're already a bit short for him - which I only notice if I put him in sleepers. It's his legs that are long, not his body particularly. He's got unbelievable long limbs! How funny!
Oceana woke me up this morning when she was rubbing lotion (icky lotion that I don't want her to touch) into my back. I had put her in our bed around 6:15, but dozed for another hour. I'm stupid... We had to take a shower immediately afterwards coz she was covered in NASTINESS! What a fantastically fun way to wake up on Saturday morning.
Not much happening today - it's been pouring all day. We visited a friend. My mom is packing. I worked on some letters for local schools (Marine Reach letters) inviting them to our ship's send off in April and asking to do a presentation about children who don't get medical/dental care. Now I'm gonna go looking at rental properties online and then write a RAM (risk assessment and management) report for the city council for our send off. Blah. But the babies are sleeping - so get the work done while it's quiet!!!
Day 53
We're all fine! Don't worry! I know I've been MIA for 48 hours - my apologies. Wednesday was spent cleaning all day - my parents house had a showing and it was ... uh ... pig sty material.
Thursday morning we left very early for Tauranga. Heather came and changed Joshua's bandages and the antiobitic cream seems to have worked GREAT! This is fantastic because his doctors don't want him on continuous antibiotics, because eventually he'll become immune to them. We went down for my first big meeting for communications with Marine Reach Ministries. There's a big send off for the ship on the 5th of April, and I'm "in charge" (how terrifying) of the event. So there's a lot to do. Anyways, we were planning to go down, have one meeting, go out and look at houses, come back for a 2nd meeting, and then go home. Instead...
Matt had his meeting and I had my first. Then we went out looking for houses... I thought this whole renting houses thing was easier. So after a lot of frustration and a bunch of phone calls two days later - we've not looked at a single house. And we don't even have one full application put in... pieces of one and a bunch more sitting in a box in my kitchen. I was frustrated and gave up... what can I say?
We stayed the night at a friend's place - Joshua's adopted great grandparents - Ben and Helen A.
He's one of the old ship captains from way back... he's so wonderful and Helen is just a delight to be with. Helen and Ben had a daughter - Jenny - who caught meningitis as a baby. She was misdiagnoses for several days and by the time it was diagnosed, the damage was already done. Jenny was never "normal" after that and developed hydrocephalus. She lived for 5 years (she died as a result of having her teeth pulled ... not because of her condition). Helen has a soft spot for Joshua because of Jenny - and she loved holding him and talking to him. It was wonderful to stand in her living room and see pictures of Jenny (45 yr old pictures) ... she was a beautiful little girl. It's wonderful to see that 45 years down the track Helen and Ben still love their little girl so much, and she's forever one of their six children... certainly not forgotten. It's a good thing to see. Now I don't ever have to feel that I have to forget Joshua or feel less upset or feel less empty... he's my baby, he'll always be my baby ....
I saw a boy with his mom in a store today. He was probably 13 or 14, and was (some sort of) mentally disabled. And all I could do was smile... because I knew his momma loved him SOOO much! I could see it by the way she was letting him help her carry something, and she was smiling. It made me really happy to be out and about with Joshua.
But in that same store (not 5 minutes later) I saw a teenage girl look at me funny. I chalked it up to Joshua being in his sling (his head looks strange in the sling) and ignored it. Just a few minutes later I saw her walk up to her mother and whisper and point. Then they stood there and stared at us. And my mind ran a hundred miles an hour.
*Is she confused about why there's a lump behind his head (you couldn't see it when he was in the sling, just that there's a lump)?
*Is she confused about how small his head is and how it slopes back differently?
*Does she think I hurt him?
I go stuck on "Does she think I hurt him." And I got scared. What if people thought I did something to him? What if people don't get it and assume that? But at the same time I didn't want anyone to come talk to me about it.
I was walking around aimlessly - totally absorbed by these thoughts - when another young girl (sales rep from the store) looked up at me. I thought she MUST be thinking the same stuff, and got more depressed. A few steps later I heard, "Excuse me, ma'am?"
And she asked me, "Where do you get those sling things?" Haha. Here I am totally FLIPPING OUT and this girl's impressed by my handmade peanut pouch. I'm so panicky. I should laugh at myself. I explained that I made it and then walked away ........ smiling.
Joshua's been making noise today - sort of "talking". It's not quite gurgles and cooing, but it's as close as we've been. He's such a good sport - he was in and out of his carseat all day.
He goes for another weigh in on Monday. (That'll be Sunday evening EST)
Thursday morning we left very early for Tauranga. Heather came and changed Joshua's bandages and the antiobitic cream seems to have worked GREAT! This is fantastic because his doctors don't want him on continuous antibiotics, because eventually he'll become immune to them. We went down for my first big meeting for communications with Marine Reach Ministries. There's a big send off for the ship on the 5th of April, and I'm "in charge" (how terrifying) of the event. So there's a lot to do. Anyways, we were planning to go down, have one meeting, go out and look at houses, come back for a 2nd meeting, and then go home. Instead...
Matt had his meeting and I had my first. Then we went out looking for houses... I thought this whole renting houses thing was easier. So after a lot of frustration and a bunch of phone calls two days later - we've not looked at a single house. And we don't even have one full application put in... pieces of one and a bunch more sitting in a box in my kitchen. I was frustrated and gave up... what can I say?
We stayed the night at a friend's place - Joshua's adopted great grandparents - Ben and Helen A.
He's one of the old ship captains from way back... he's so wonderful and Helen is just a delight to be with. Helen and Ben had a daughter - Jenny - who caught meningitis as a baby. She was misdiagnoses for several days and by the time it was diagnosed, the damage was already done. Jenny was never "normal" after that and developed hydrocephalus. She lived for 5 years (she died as a result of having her teeth pulled ... not because of her condition). Helen has a soft spot for Joshua because of Jenny - and she loved holding him and talking to him. It was wonderful to stand in her living room and see pictures of Jenny (45 yr old pictures) ... she was a beautiful little girl. It's wonderful to see that 45 years down the track Helen and Ben still love their little girl so much, and she's forever one of their six children... certainly not forgotten. It's a good thing to see. Now I don't ever have to feel that I have to forget Joshua or feel less upset or feel less empty... he's my baby, he'll always be my baby ....
I saw a boy with his mom in a store today. He was probably 13 or 14, and was (some sort of) mentally disabled. And all I could do was smile... because I knew his momma loved him SOOO much! I could see it by the way she was letting him help her carry something, and she was smiling. It made me really happy to be out and about with Joshua.
But in that same store (not 5 minutes later) I saw a teenage girl look at me funny. I chalked it up to Joshua being in his sling (his head looks strange in the sling) and ignored it. Just a few minutes later I saw her walk up to her mother and whisper and point. Then they stood there and stared at us. And my mind ran a hundred miles an hour.
*Is she confused about why there's a lump behind his head (you couldn't see it when he was in the sling, just that there's a lump)?
*Is she confused about how small his head is and how it slopes back differently?
*Does she think I hurt him?
I go stuck on "Does she think I hurt him." And I got scared. What if people thought I did something to him? What if people don't get it and assume that? But at the same time I didn't want anyone to come talk to me about it.
I was walking around aimlessly - totally absorbed by these thoughts - when another young girl (sales rep from the store) looked up at me. I thought she MUST be thinking the same stuff, and got more depressed. A few steps later I heard, "Excuse me, ma'am?"
And she asked me, "Where do you get those sling things?" Haha. Here I am totally FLIPPING OUT and this girl's impressed by my handmade peanut pouch. I'm so panicky. I should laugh at myself. I explained that I made it and then walked away ........ smiling.
Joshua's been making noise today - sort of "talking". It's not quite gurgles and cooing, but it's as close as we've been. He's such a good sport - he was in and out of his carseat all day.
He goes for another weigh in on Monday. (That'll be Sunday evening EST)
Monday, February 25, 2008
Day 50
116 ounces
.
.
.
.
.
.
.
.
.
.
.
3.28 kilograms
.
.
.
.
.
.
.
.
.
3280 grams
.
.
.
.
.
.
.
.
7 pounds 4oz!!!!!
I am a believer. Ok. So I'm always the one who sort of nods and smiles (but inside is rolling her eyes) when the "crunchy" people start talking about herbs. I tend to be very sarcastic and not believe people who say, this herb or that herb or this "potion" blah blah blah.
HOWEVER!
Fenugreek works. I started taking it at 9pm Saturday night and by 9pm Monday night I'd done a 180 degree turn in my milk production. Joshua has MORE THAN HE NEEDS today! I'm pumping what's left and saving it for later!
He's gained 7oz in 6 days!!!!!
Please pray for - what looks like - infection on Joshua's cele again. Rather than keep him on continuous (and eventually ineffective) antiobiotics, they've given him a topic antiobiotic to kill off the staph that naturally grows on his skin. Hopefully this will keep it from getting infected any further.
In answer to a few questions in the comments:
At present there aren't surgical options. I don't post information about tests we're having done or surgeon's we contact because I don't want opinions on that. I don't want the world to walk through dashed hopes with me. Our family is walking through it with us. But be assured, we're doing everything in our power to insure that there is no stone unturned. I will have a nervous breakdown, if in 5 years it comes to light that something could have been done for Joshua.
Rest assured. I'm not sitting around ignoring the possibilities. But at present there aren't any good alternatives. Joshua's happy, he's healthy, he's not in pain. And that's the best we can do for him now. He's a miracle. And each day is precious. If we don't get to keep him longterm, we're prepared for that. We're not okay with it, which is why we're looking into other possibilities. But I won't post that stuff until I have something more concrete to tell the world.
.
.
.
.
.
.
.
.
.
.
.
3.28 kilograms
.
.
.
.
.
.
.
.
.
3280 grams
.
.
.
.
.
.
.
.
7 pounds 4oz!!!!!
I am a believer. Ok. So I'm always the one who sort of nods and smiles (but inside is rolling her eyes) when the "crunchy" people start talking about herbs. I tend to be very sarcastic and not believe people who say, this herb or that herb or this "potion" blah blah blah.
HOWEVER!
Fenugreek works. I started taking it at 9pm Saturday night and by 9pm Monday night I'd done a 180 degree turn in my milk production. Joshua has MORE THAN HE NEEDS today! I'm pumping what's left and saving it for later!
He's gained 7oz in 6 days!!!!!
Please pray for - what looks like - infection on Joshua's cele again. Rather than keep him on continuous (and eventually ineffective) antiobiotics, they've given him a topic antiobiotic to kill off the staph that naturally grows on his skin. Hopefully this will keep it from getting infected any further.
In answer to a few questions in the comments:
At present there aren't surgical options. I don't post information about tests we're having done or surgeon's we contact because I don't want opinions on that. I don't want the world to walk through dashed hopes with me. Our family is walking through it with us. But be assured, we're doing everything in our power to insure that there is no stone unturned. I will have a nervous breakdown, if in 5 years it comes to light that something could have been done for Joshua.
Rest assured. I'm not sitting around ignoring the possibilities. But at present there aren't any good alternatives. Joshua's happy, he's healthy, he's not in pain. And that's the best we can do for him now. He's a miracle. And each day is precious. If we don't get to keep him longterm, we're prepared for that. We're not okay with it, which is why we're looking into other possibilities. But I won't post that stuff until I have something more concrete to tell the world.
Day 49 - 7 weeks
Daddy made a cake for Joshua's 7 week birthday. Of course he made it after Oceana was asleep (we are slowly learning that sugar - past about 5pm - is a stupid idea. And Joshua certainly didn't eat any. But we did sing Happy Birthday. Ok, I sang Happy Birthday. But when you have a birthday part every week you sort of lose the luster for big shindigs. However, we will be having a birthday party when Bryce, Christina, and Miles visit - because it's more fun celebrating with people. My parents would love to have a birthday party too, but it seems they're always gone on Mondays. One of these days Mum... we'll pack all day and then party all night, ok? Or at least until 8pm...
That's the newest news. Matt and I have decided we're moving. To Tauranga. It's a city about an hour south of Waihi Beach. I've taken a job with Marine Reach Ministries (the ship's organization) as the Events Coordinator and writer/designer/organizer for Making Waves magazine. Matt's having a meeting (hopefully) this week with our director to discuss working for MRM full time. But it's difficult to work for an organization that is an hour away. Especially when we have a non-toll-call phone. Ick. So we're going to be looking at houses to rent this week - please pray that we find something in a good area, for a good price, and that everything goes smoothly in that respect.
We want this to be over and done with as soon as possible (moved in by April 1) because Mum and Dad are planning to rent this house out (since they're going to be travelling for 6 months this year). So this whole (5 bedroom) house has to be cleared, cleaned, and revamped for renting in the next 3 - 5 weeks. AK! And there's Joshua and Oceana to contend with.
So I've started packing. But I'm at that point that it's difficult to decide
1. What I need
2. What I want
3. What can be stored
4. What I can't touch because it's my mother's
5. If I want lots of furniture or a little furniture
6. If I want every kitchen appliance
7. What I can throw out/online auction/pack without repercussions from my mother's direction
Oh this is gonna be fun. And tonight I started working on my job (first time I've gotten a ToDo list - thanks Jo!) and I'm suddenly realizing how busy I'm gonna get.
Don't worry. I know this post is going to draw some "You should lay low! Don't do too much! You need to concentrate on Joshua!" comments. But seriously, we've been SITTING for 7 weeks (and longer, because we did it for the 5 weeks before he was born too) and it's getting to us. There's nothing like prolonged periods of apathy/induced laziness to make you feel like sinking your teeth into something! There's only so much time I can spend sitting around the house and dwelling on the situation. And if something happens with Joshua - our lives will go on hold again. We are prepared for that. Not so much prepared, as aware. We know it might happen. And we'll make the best decision for our family at that time - no matter what the situation is.
Ya'll are so cute when you worry about me/us. Haha. It's strange to me. I'm one of those self-proclaimed tough 'ole birds. Haha. I'm usually trying to hold it all together, make everything alright, nothing's gonna bother me - etc etc. But suddenly I'm getting (everyday) these comments about "You're just amazing Susie!", "What a wonderful Mom", etc...
Let me tell you. There's nothing quite like reading that stuff and thinking in my mind "What are they talking about?" or "If they'd only just seem me rail on my poor daughter for spilling her water." or "Are they joking?" or "I guess it's just an easy thing to say when you don't know what to say." But I do appreciate it. I'm realizing that maybe... just maybe... I am. You know how when you're about 13 years old and going through puberty you get comments about "You're such a beautiful young woman."? Ugh. I turned ninety-seven shades of red, bumbled and mumbled and managed to say something like, "Yah right!" because I couldn't take a compliment. The only reason I'm getting better at that is because I can say, "Uh. Thanks. I'm trying." Seriously - I think I say it between once and a dozen times a day. I still have that "Yah right!" reaction in my head - I've just trained my mouth to respond otherwise.
But thank you. I'm beginning (BEGINNING) to believe it. Haha. My house is still a mess. I'm still an iffy mom a lot of the time. I'm still a dog-yeller-atter. I'm still ... useless at taking compliments.
XO!
PS - Joshua's going for a weigh in a 1:30 tomorrow (7:30pm EST)!
That's the newest news. Matt and I have decided we're moving. To Tauranga. It's a city about an hour south of Waihi Beach. I've taken a job with Marine Reach Ministries (the ship's organization) as the Events Coordinator and writer/designer/organizer for Making Waves magazine. Matt's having a meeting (hopefully) this week with our director to discuss working for MRM full time. But it's difficult to work for an organization that is an hour away. Especially when we have a non-toll-call phone. Ick. So we're going to be looking at houses to rent this week - please pray that we find something in a good area, for a good price, and that everything goes smoothly in that respect.
We want this to be over and done with as soon as possible (moved in by April 1) because Mum and Dad are planning to rent this house out (since they're going to be travelling for 6 months this year). So this whole (5 bedroom) house has to be cleared, cleaned, and revamped for renting in the next 3 - 5 weeks. AK! And there's Joshua and Oceana to contend with.
So I've started packing. But I'm at that point that it's difficult to decide
1. What I need
2. What I want
3. What can be stored
4. What I can't touch because it's my mother's
5. If I want lots of furniture or a little furniture
6. If I want every kitchen appliance
7. What I can throw out/online auction/pack without repercussions from my mother's direction
Oh this is gonna be fun. And tonight I started working on my job (first time I've gotten a ToDo list - thanks Jo!) and I'm suddenly realizing how busy I'm gonna get.
Don't worry. I know this post is going to draw some "You should lay low! Don't do too much! You need to concentrate on Joshua!" comments. But seriously, we've been SITTING for 7 weeks (and longer, because we did it for the 5 weeks before he was born too) and it's getting to us. There's nothing like prolonged periods of apathy/induced laziness to make you feel like sinking your teeth into something! There's only so much time I can spend sitting around the house and dwelling on the situation. And if something happens with Joshua - our lives will go on hold again. We are prepared for that. Not so much prepared, as aware. We know it might happen. And we'll make the best decision for our family at that time - no matter what the situation is.
Ya'll are so cute when you worry about me/us. Haha. It's strange to me. I'm one of those self-proclaimed tough 'ole birds. Haha. I'm usually trying to hold it all together, make everything alright, nothing's gonna bother me - etc etc. But suddenly I'm getting (everyday) these comments about "You're just amazing Susie!", "What a wonderful Mom", etc...
Let me tell you. There's nothing quite like reading that stuff and thinking in my mind "What are they talking about?" or "If they'd only just seem me rail on my poor daughter for spilling her water." or "Are they joking?" or "I guess it's just an easy thing to say when you don't know what to say." But I do appreciate it. I'm realizing that maybe... just maybe... I am. You know how when you're about 13 years old and going through puberty you get comments about "You're such a beautiful young woman."? Ugh. I turned ninety-seven shades of red, bumbled and mumbled and managed to say something like, "Yah right!" because I couldn't take a compliment. The only reason I'm getting better at that is because I can say, "Uh. Thanks. I'm trying." Seriously - I think I say it between once and a dozen times a day. I still have that "Yah right!" reaction in my head - I've just trained my mouth to respond otherwise.
But thank you. I'm beginning (BEGINNING) to believe it. Haha. My house is still a mess. I'm still an iffy mom a lot of the time. I'm still a dog-yeller-atter. I'm still ... useless at taking compliments.
XO!
PS - Joshua's going for a weigh in a 1:30 tomorrow (7:30pm EST)!
Tuesday, February 12, 2008
Day 37
All is well this morning. We are going to Tauranga for the first time, it's an hour away. I have a meeting for this conference (this weekend) and we need to do some shopping for the gift baskets. Joshua had a doctor's appointment, but they had an electrical storm yesterday - messing up some equiptment - so our appointment is moved to Friday.
We're watching Cinderella ... again ... we're up to once a day no. Hmm...
Cathy P. asked how do I burp him?
Good question! I usually lay him on my chest with his head and cele laying on my upper chest - so his head's nearly hitting my chin. That works best, but if he won't burp - I lay him on my lap (tummy-down). It's essentially the same. just w/ a bit of finesse.
And the recipe for the biscuits is simple:
It's buttermilk biscuits, but I rarely end up doing the buttermilk part.
2 c flour
1 t salt
1 t baking powder
2 T butter
1 c milk w/ 1 T vinegar
Let milk and vinegar stand a minute - this is quicky-buttermilk. Rub in butter with dry ingredients and add milk. Pat out on floured board, cut with a cutter (a plastic cup works well too). Yesterday I just cut them in squares to save time. Bake at 350F (180C) for 10 min.
We're watching Cinderella ... again ... we're up to once a day no. Hmm...
Cathy P. asked how do I burp him?
Good question! I usually lay him on my chest with his head and cele laying on my upper chest - so his head's nearly hitting my chin. That works best, but if he won't burp - I lay him on my lap (tummy-down). It's essentially the same. just w/ a bit of finesse.
And the recipe for the biscuits is simple:
It's buttermilk biscuits, but I rarely end up doing the buttermilk part.
2 c flour
1 t salt
1 t baking powder
2 T butter
1 c milk w/ 1 T vinegar
Let milk and vinegar stand a minute - this is quicky-buttermilk. Rub in butter with dry ingredients and add milk. Pat out on floured board, cut with a cutter (a plastic cup works well too). Yesterday I just cut them in squares to save time. Bake at 350F (180C) for 10 min.
Sunday, February 10, 2008
??? Questions ??? 7
Michelle said...What effect does the leaking have on Joshua, will it replenish itself and is the wrapping helping to reduce the leaking. How is O coping with all the attention on J? What is a typical routine for you guys?
Effect? He's not bothered by it.
Will it replentish? I think so. He loses enough that we should notice a size difference in his cele - but there isn't one.
Is the wrapping helping to reduce the leaking? No. He still leaks the same. Perhaps it does reduce it, but because it's different that when he first leaked, it's difficult to tell how much it would leak (at present) without the wrappings.
How is Oceana coping with the attention to Joshua? Very well. We try to involve her in "helping" and holding him, getting diapers, "going to see baby" all the time, and spending time with her. She's enough of a selfish toddler that she doesn't get it when "Mommy can't pick you up" or "Mommy can't hold you right now" or "Mommy's feeding Joshua, i can't get you a snack now. please wait".
What's our typical routine? Hahaha. I'm trying to figure out what routine's going to look like. I'm not a routine person. However - an average day looks like this.
6:30-7:00 - Oceana gets up and has breakfast.
7:30-8:00 - Wake up Joshua and feed him.
8:00-10:00 - Hanging around, changing the diapers, changing the clothes. Joshua sleeps.
10:00-12:00 - Oceana plays, I blog, laundry... etc.
12:00 - Lunch, feed Joshua
Afternoon - Hanging out, doing "stuff", Oceana takes naps occasionally.
I try to take a walk every few days. Hopefully more this week.
Late afternoon - Making dinner
6:30 and beyond - we're TV people. I make no apologies.
8:00 - Oceana's bedtime.
11:00 - Last feed for Joshua.
12:00 - 1:00 - I'm usually just getting to bed....
Matt runs every day and lifts weights every other day. So that's about an hour and a half out of the day. Usually in the morning - sometimes in the evenings.
Thanks for the reminder - I've been wanting to see what it is that I accomplish in a day and multiply it. I feel like a very lazy person, a very unhealthy person, a very unfit person, an impatient mum, and a shut-down-type person. It's gonna change.
Friday, February 8, 2008
Day 33
That good news is such a relief. I was really worried that in the midst of all this mess. I was sure I'd end up being low on iron and have a thyroid problem. While it still leaves the panic attacks unanswered (the thyroid might have been relate to them), it's reassuring that my thyroid's not "going". (Like it's a carburator or something... haha) My dad's sister has had her thryoid removed, and she told me it "gave out" when she was pregnant with her 2nd child - at the age of 22. (OH MY GOODNESS!) So it had me pretty freaked out when I looked at some of the "symptoms" of thyroid issues. It's amazing how when you're worried you can "see" your symptoms so much more. Skin and hair changes - fatigue - depression - anxiety - trouble remembering things. Ok - who, when they're stressed, doesn't see some of these things!
"Hi, my name is Susie; and I'm a hypochondriac!"
Oceana's hanging on my shoulders and has a full-o-stink diaper. I'll be right back.
All better.
Joshua's sitting up in one of his chairs this morning. As Matt put it, "Buddy, you wanna watch the world go by?" On that note, we've realized that either Joshua's blind (but can see light) or he doesn't have the reaction to blink when things are moving close to his face. If we wave our hands in his face - where a normal person would blink uncontrollably - he isn't even slightly phased.
My dad is back from Samoa this morning. It was nerve-wracking having him gone for over a week with Joshua in his present condition. Especially when he had the infection. But he's back and Joshua's doing great.
Beautiful little hands. Looooong fingers. See all those "rolls"? My boy needs to gain some more weight and fill those out!
Long skinny feet too.
Hanging out in his bassinet. Those are preemie-sized pants. Wow, he's still so teeny.
"Hi, my name is Susie; and I'm a hypochondriac!"
Oceana's hanging on my shoulders and has a full-o-stink diaper. I'll be right back.
All better.
Joshua's sitting up in one of his chairs this morning. As Matt put it, "Buddy, you wanna watch the world go by?" On that note, we've realized that either Joshua's blind (but can see light) or he doesn't have the reaction to blink when things are moving close to his face. If we wave our hands in his face - where a normal person would blink uncontrollably - he isn't even slightly phased.
My dad is back from Samoa this morning. It was nerve-wracking having him gone for over a week with Joshua in his present condition. Especially when he had the infection. But he's back and Joshua's doing great.
Beautiful little hands. Looooong fingers. See all those "rolls"? My boy needs to gain some more weight and fill those out!
Long skinny feet too.
Hanging out in his bassinet. Those are preemie-sized pants. Wow, he's still so teeny.
Good news
My thyroid's within the normal range.
My iron's within the normal range.
Joshua's CSF isn't leaking too badly. Yesterday the nurse reused the previous day's outside padding (just changed the inside dressing). And she did the same thing today. Which means that Joshua used the same "packing" for 3 days! When it was leaking heavily he was going through all the layers and soaking his hat after about 24-36 hours.
And the house is clean.
My iron's within the normal range.
Joshua's CSF isn't leaking too badly. Yesterday the nurse reused the previous day's outside padding (just changed the inside dressing). And she did the same thing today. Which means that Joshua used the same "packing" for 3 days! When it was leaking heavily he was going through all the layers and soaking his hat after about 24-36 hours.
And the house is clean.
Monday, February 4, 2008
Medical Clarification
To Nurse Sarah and any other medical professionals lurking: No, it's not the resistant staph infection, just Staphylococcus aureus.
To everybody else: S. aureus is a normal bacterial in your nose and on your skin. An overgrowth results in a staph infection. The resistant staph infection is really bad. So in the scheme of things... S aureus is a good thing.
To everybody else: S. aureus is a normal bacterial in your nose and on your skin. An overgrowth results in a staph infection. The resistant staph infection is really bad. So in the scheme of things... S aureus is a good thing.
Day 29
I tried to upload a video of Oceana and Joshua last night. But after several hours of letting it upload I refreshed the page and lost it. I give up. If I ever figure out an easier way to upload I will. The video was of them having hiccups together! Joshua had them, so I picked him up. I was sitting at the computer holding him when I realized Oceana's talking to me and missing out words. Suddenly it registered that she had hiccups too. I started yelling for my brother to "Get in here! Get the camera!" I'm sure he thought I was nuts. It was so funny!
One person already commented on the fact that we're giving Joshua antibiotics. I know we said that we'd probably not use antibiotics. The doctors that saw him before he was born and the pediatrian that saw him when he was born all said that antibiotics would prolong the inevitable and that they wouldn't prescribe them. However, our GP and the health nurse who sees Joshua feel differently about it. When I took Joshua in last week and she started asking if she should swab the scab for infection. I burst into tears! I think I felt that if I knew it was infection, it would seem all the more real. And I "knew" they wouldn't give him antibiotics. So knowing that there was infection would only drive home that point. And instead Dr Bowman and Heather the nurse stood there and kept asking if we'd been able to make any decisions for Joshua. I continued crying, and couldn't barely talk, because the truthful answer was "No." We've been having to go with what we're told, because we really don't know what to expect, and we're not medically trained. So our assumptions have been very wrong sometimes. We've just accepted what we've been told, and gone along with it. (Some of this is due to New Zealand's socialized medicine - I can't just "get another opinion" as easily as in the US).
So Dr B and Heather strongly encouraged me to let them swab it and check for infection. They said - it's paliative care - we want to make him comfortable. And as they put it - infection's not comfortable. So he's on antibiotics - which probably are prolonging the "inevitable". But Joshua's doing great. I'm so glad we're able to choose some things for Joshua - and that he's not at the mercy of 'some doctor'.
In other news.
Matt got a gift from his dad yesterday - which he was totally surprised by - and very excited about too. And Oceana found a pen. Yeah.... "found a pen". Yesterday morning my brother gave her a tiny tattoo on her arm that said "I *heart* Mom and Dad"...which was cute at the time. Until she got the idea that pen and skin were fun. So last night, before bed (when she was only daiper-clad) she managed to redecorate her epidermis... just a bit... ok... just a lot. All four limbs and her tummy. Wow.... Oh well. I took pictures.
Immigration medical exams and such are finished. Oh good. No more chest xrays, no more peeing in cups, no more blood sucking phlebotomists, no more standing on scales, and no more filling out paperwork. Ok, nix the last one - we still have to fill out the actual applications for visas. Blah. Don't I sound excited. I should be - I should be knock-down-drag-out-passionate about it, because our visas expire in a month and 4 days. AK!
*Pray for Joshua's staph infection
*Pray for Joshua's leakage - it's going through all the bandages in one day (it's only changed every 2 days) even with extra gauze inside. I had to put more gauze in again yesterday.
*Pray for Oceana - her sleep schedule got messed up the other day, so she's a bit worn out today (we've had to tantrums by quarter to 10)
*Pray for our visas - we're trying to get the last bits for the application today. I just want it in the mail and out of my hair!
One person already commented on the fact that we're giving Joshua antibiotics. I know we said that we'd probably not use antibiotics. The doctors that saw him before he was born and the pediatrian that saw him when he was born all said that antibiotics would prolong the inevitable and that they wouldn't prescribe them. However, our GP and the health nurse who sees Joshua feel differently about it. When I took Joshua in last week and she started asking if she should swab the scab for infection. I burst into tears! I think I felt that if I knew it was infection, it would seem all the more real. And I "knew" they wouldn't give him antibiotics. So knowing that there was infection would only drive home that point. And instead Dr Bowman and Heather the nurse stood there and kept asking if we'd been able to make any decisions for Joshua. I continued crying, and couldn't barely talk, because the truthful answer was "No." We've been having to go with what we're told, because we really don't know what to expect, and we're not medically trained. So our assumptions have been very wrong sometimes. We've just accepted what we've been told, and gone along with it. (Some of this is due to New Zealand's socialized medicine - I can't just "get another opinion" as easily as in the US).
So Dr B and Heather strongly encouraged me to let them swab it and check for infection. They said - it's paliative care - we want to make him comfortable. And as they put it - infection's not comfortable. So he's on antibiotics - which probably are prolonging the "inevitable". But Joshua's doing great. I'm so glad we're able to choose some things for Joshua - and that he's not at the mercy of 'some doctor'.
In other news.
Matt got a gift from his dad yesterday - which he was totally surprised by - and very excited about too. And Oceana found a pen. Yeah.... "found a pen". Yesterday morning my brother gave her a tiny tattoo on her arm that said "I *heart* Mom and Dad"...which was cute at the time. Until she got the idea that pen and skin were fun. So last night, before bed (when she was only daiper-clad) she managed to redecorate her epidermis... just a bit... ok... just a lot. All four limbs and her tummy. Wow.... Oh well. I took pictures.
Immigration medical exams and such are finished. Oh good. No more chest xrays, no more peeing in cups, no more blood sucking phlebotomists, no more standing on scales, and no more filling out paperwork. Ok, nix the last one - we still have to fill out the actual applications for visas. Blah. Don't I sound excited. I should be - I should be knock-down-drag-out-passionate about it, because our visas expire in a month and 4 days. AK!
*Pray for Joshua's staph infection
*Pray for Joshua's leakage - it's going through all the bandages in one day (it's only changed every 2 days) even with extra gauze inside. I had to put more gauze in again yesterday.
*Pray for Oceana - her sleep schedule got messed up the other day, so she's a bit worn out today (we've had to tantrums by quarter to 10)
*Pray for our visas - we're trying to get the last bits for the application today. I just want it in the mail and out of my hair!
4 weeks - 28 days
Here's what Joshua looks like today - on his 4th birthday. He's doing pretty good. 
He does not like medicine though. Joshua rarely cries. In fact it's probably been ten days since I last heard him cry. When I tried to give him his medicine tonight he really like it. So I gave it to him a little quicker - too quick in fact! He choked a bit and let out a big cry. His cries startle me SO badly. I freaked. But I think it just pushed the syringe to fast.
The reason for the medicine (Flucloxacillin Erythromyacin) is that he's got an infection. The scab/open wound that was weeping was infected. It had a "heavy growth of Staphylococcus aureus". I'm sure you're not interested in what it was. But I'm always interested in that "actual" scenario - beyond Joshua's-on-antibiotics-because-it's-infected. That probably explains why when people ask me the situation with Joshua I end up explaining what a neural tube defect is, how it happens, and what can happen when there's an encephalocele. I guess I have an aversion to saying "He's got a birth defect".
Joshua, Oceana, and I went to a friend's house today, because Matt and Josiah were watching the Superbowl. They had to go to another friend's - so I went to my friend's and hung out. As I put it to Matt, "I don't want to be left home alone and outnumbered!". It made me realize that if Joshua stays with us and Matt gets a job - I will be home alone and outnumbered. Uhoh.
You can see all Joshua's acne - poor boy. His naked picture makes him look more filled out than he seems to be. He's still skinny. Wayyyyy skinny. But I think he's gaining still.
He does not like medicine though. Joshua rarely cries. In fact it's probably been ten days since I last heard him cry. When I tried to give him his medicine tonight he really like it. So I gave it to him a little quicker - too quick in fact! He choked a bit and let out a big cry. His cries startle me SO badly. I freaked. But I think it just pushed the syringe to fast.
The reason for the medicine (Flucloxacillin Erythromyacin) is that he's got an infection. The scab/open wound that was weeping was infected. It had a "heavy growth of Staphylococcus aureus". I'm sure you're not interested in what it was. But I'm always interested in that "actual" scenario - beyond Joshua's-on-antibiotics-because-it's-infected. That probably explains why when people ask me the situation with Joshua I end up explaining what a neural tube defect is, how it happens, and what can happen when there's an encephalocele. I guess I have an aversion to saying "He's got a birth defect".
Joshua, Oceana, and I went to a friend's house today, because Matt and Josiah were watching the Superbowl. They had to go to another friend's - so I went to my friend's and hung out. As I put it to Matt, "I don't want to be left home alone and outnumbered!". It made me realize that if Joshua stays with us and Matt gets a job - I will be home alone and outnumbered. Uhoh.
You can see all Joshua's acne - poor boy. His naked picture makes him look more filled out than he seems to be. He's still skinny. Wayyyyy skinny. But I think he's gaining still.
Saturday, February 2, 2008
Day 27
all is well. joshua's nurse came and redressed his 'cele. its looking less goopy but still leaking lots. he's in my arms so i'm typing one-handed. capitals are unnecessary....
we're getting ready for church.
had a yay! moment this morning when i *ever-so bravely* opened the box of pre-pregnancy clothes. after trying two pairs of pants i gave up... but did find a lot of shirts that fit. i was getting sick of the same 3 shirts over and over again. yay!
oceana peed on the carpet this morning. my fault for letting her run naked too long.
joshua's sporting some new gear from a friend. so kool to have him in stuff that fits.
will write again later.
we're getting ready for church.
had a yay! moment this morning when i *ever-so bravely* opened the box of pre-pregnancy clothes. after trying two pairs of pants i gave up... but did find a lot of shirts that fit. i was getting sick of the same 3 shirts over and over again. yay!
oceana peed on the carpet this morning. my fault for letting her run naked too long.
joshua's sporting some new gear from a friend. so kool to have him in stuff that fits.
will write again later.
Friday, February 1, 2008
??? Questions ??? 5
Do I choose clothes that are easier to get over his 'cele?
Yes. Definitely. I put his onesies on from the bottom. His bottom is skinny enough that this is possible. I put him in a lot of sleepers. Though today we were given a bunch of "clothes" as opposed to sleepers. I'm looking forward to those! And they're preemie sized, so hopefully they'll fit him right. :) I'm excited. If he weren't asleep right now I'd be trying them on him. But if I wake him up he'll want to eat again!
I tried once to put a sleeper on over his head (it was only open at the top and bottom) and decided never again. I think it might be a bit easier now that his cele is wrapped so well - but I'm still scared to try it.
I can change him by myself - I've gotten used to it. The first few times, I felt I needed extra hands. But now I've learned that I can roll him to the sides, or lift his body and leave his head laying down.
I put his hats on like a glove. I hold onto his head, slide the whole hat over the cele and my hand and the lay him down and pull my hand out slowly.
Onesies go on from the bottom, up to the chest and then I put in one arm at a time. From there I can readjust the top so it covers his shoulders.
Pants, diapers, etc aren't so hard. That's just normal.
Sleepers. I put his left side in and then roll him over slightly and pull the sleeper under him to the right side. Or I can also just lay him down on an open sleeper and go from there.
Shirts only go on if they can come from the bottom up.
I'll have to get some video of how we pick him up and hold him. I'm sure it makes you wonder.
Yes. Definitely. I put his onesies on from the bottom. His bottom is skinny enough that this is possible. I put him in a lot of sleepers. Though today we were given a bunch of "clothes" as opposed to sleepers. I'm looking forward to those! And they're preemie sized, so hopefully they'll fit him right. :) I'm excited. If he weren't asleep right now I'd be trying them on him. But if I wake him up he'll want to eat again!
I tried once to put a sleeper on over his head (it was only open at the top and bottom) and decided never again. I think it might be a bit easier now that his cele is wrapped so well - but I'm still scared to try it.
I can change him by myself - I've gotten used to it. The first few times, I felt I needed extra hands. But now I've learned that I can roll him to the sides, or lift his body and leave his head laying down.
I put his hats on like a glove. I hold onto his head, slide the whole hat over the cele and my hand and the lay him down and pull my hand out slowly.
Onesies go on from the bottom, up to the chest and then I put in one arm at a time. From there I can readjust the top so it covers his shoulders.
Pants, diapers, etc aren't so hard. That's just normal.
Sleepers. I put his left side in and then roll him over slightly and pull the sleeper under him to the right side. Or I can also just lay him down on an open sleeper and go from there.
Shirts only go on if they can come from the bottom up.
I'll have to get some video of how we pick him up and hold him. I'm sure it makes you wonder.
Thursday, January 31, 2008
??? Questions ??? 4
The only way I can explain it is to ask you all this: If you were to get married to the man or woman of your dreams (Or if you already are) - imagine knowing that they'd pass away in a few weeks. Would you spend every waking moment with them? Holding their hand, talking, praying, and trying to fit as may memories into those moments as possible.
Ask anyone that's lost a child, whether before or after birth - they'll tell you they wanted more time. We're creating lifetimes of memories in days, weeks, maybe months.
I can only assume: Please tell me if I'm wrong - Tarah lost two beautiful babies - Grace (03/05) and Gideon (01/06). Gideon lived for six weeks. Tarah and Seth never got to spend time with Grace who was miscarried. I know they wish they'd had more time with Gideon and any time at all with Grace. These are our children. We love them. We want them.
Each day is a gift. A good gift. Yeah, I'll mourn when he's gone. Yeah, it'll be the hardest thing I've ever walked through. Yeah, I'm attached. But there's no way I'd want it any other way. NO WAY IN HELL do I wish he'd passed away sooner. I'm so happy to have him. So thrilled to have time to make memories.
Wednesday, January 30, 2008
??? Questions ??? 3
**How do I find time for crafts? What do I use for patterns? What are some other crafts I've done?
Ok. I find time because it's stress-relief for me. I usually crochet or knit or sew while watching tv. My family is always thrilled when I'm knitting because then they don't have to put subtitles on to watch a movie (when my sewing machine is roaring away). I usually knit from about 8 or 9 till bedtime. Usually bedtime is dependent on when the project is at a good "stopping point". Last night that meant when the hat was done. :)
Patterns. Ohhh baby. I usually have an idea in mind and then google it. No joke. If I want to make a pair of baby pants - like the blue ones in one of the recent pictures (I think, if not, in one of tomorrow's pictures) I google "knit baby pants" or "baby pattern knit trousers" until I find something I like. If I'm not find something good that way, then I go to one of my trusty dusty sites. And the list is groooooowing fast. These are the daily stops. No joke. Daily.
www.bevscountrycottage.com - has tons of baby and preemie patterns. Also has fetal demise gowns (ie. babies that are miscarried too early to fit normal clothes). Bev fascilitates preemie and fetal demise wear being given to hospitals that can use it.
www.knittingpatterncentral.com - they have EVERYTHING
www.crochetpatterncentral.com - same set up, just for crochet
www.bernat.com - as in bernat yarn. Lots of cool stuff here, very clear instructions
www.lionbrand.com - TONS of stuff. For bernat and lion brand you have to be a member, but its free, you just have to have an email and password login.
And here's links to some of my other projects.
**How has Joshua changed our family? Me personally?
In respect to our family, I think Joshua has made us want more time as a family. It's made us want to be close-knit, and spend more time together. The night before Joshua was born, Matt brought Oceana into bed with us - on purpose - so that we could all sleep together. It was fitting, we had no idea how long we'd have with Joshua. So we treasured the last little bit that we could.
For me, it's been a wake up call. I guess I thought that having healthy babies was easy. Like, get pregnant, have a baby, and then they grow up. Easy? No. I've become a lot more respectful of women who have miscarried. I've never miscarried, so please don't kill me for what I'm about to say. I used to think that women who miscarried (before 20 weeks) were making it out to be worse than it was. But I know now, that's a total lot of CRAP. Losing a child is losing a child. It doesn't matter if the child was miscarried, died because of an ectoptic pregnancy, was stillb orn, died early, died in childhood, died in adulthood, or died from a terminated pregnancy (for medical reasons) - the heartache is the same! The dreams for your child are still dashed. The place in your heart for them will forever remain empty. Your heart can grow bigger, but that puzzle piece can never be refit, it will always be missing. I have a new-found respect for women who have experienced loss.
I have discovered about myself that a) I do crafts when I'm stressed, b) I love knitting, c) I love writing and want to write a book (more on this later), d) I love my babies more than I could ever express, e) I want to learn photography so I can take better pictures of my children.
On writing a book. Maybe because I'm in New Zealand now, and don't have Barnes and Noble right around the corner, but it seems to me there's a huge hole in the market for women experiencing neonatal death - from any aspect besides miscarriage. My mom almost bought me a book about neonatal death, but she said 80-90% was about miscarriage, and not geared toward my situation. I've decided that at some point I'll take my journals, my blog, and what I've learned and write our story. I don't know if it'd get published. But perhaps that will be my way of remembering everything I could about Joshua.
**Does Joshua's cele hurt him? Um. I'm not sure. He doesn't like putting extra pressure on it (like leaning his head back into it). He flips out when we do that, but he doesn't cry, just flails. He also cries when he sneezes, we think there's something that's causing more pressure when he sneezes. This may or may not be related to his cele.
**What's Matt's and my love story? The person who posted this was at school during our freshman year (when we weren't dating) and came back in March of our junior year and arrived the day our engagement was officially announced (our college did official engagement announcements during chapel). She was confuzzled (confused/puzzled... its a word coz I say so).
Ok. This one's sort of long. To spare some details, I'll just say that I was dating someone when I left for college in Feb 2003. We dated through our freshman year and then broke up during the summer. I say this only to clarify that I hadn't even "scoped" out the guys in our class before junior year. When I first came to visit the campus in Feb 03, there was this rather bored-looking guy there with his youth pastor, also visiting. He sat in the back of the room at all the little events, slouching and looking "tough". Apparently he [Matt] scoped me out then - and made some comment after we were married about how he'd told himself he'd never be with someone as gorgeous as me. Maybe he was searching for brownie points that day, maybe it's true. :) Aw.... how cute! Anyways. So we arrived back on campus from the freshman-junior summer, and Matt's first words to his roommate were "Did Susie and X break up?" (He says he has no idea why he said it, or why it was the first thing out of him mouth).
The first 7 weeks of our junior year our whole class was in NYC doing an internship, and so we (class of 65!) got to know each other really well. While we were there (September in NYC, it was blazing hot!) a bunch of us got into a big waterfight. It carried over several weeks, and got rather crazy. I was out to get Matt back for something, and found a Gatorade jug - the big ones they empty out over the Superbowl coach's head - and went to dump it on Matt with a friend's help. I was standing behind a wall, waiting for him to come around. The idea was the slosh the whole thing on him. Instead, he walked too far around and saw me, so he wouldn't come over. Just then, one of his friends came behind me and grabbed it up. And dumped it on me. Jonny Wiedel, I'm still grumpy. :) I splooshed my way upstairs and felt rather embarrassed. That night I was sitting in a room talking with about 6 girls when my friend Danielle walked in with three long step roses and a letter. She plopped them on my lap and I about died. What do you say when you're sitting with a bunch of girls and you get roses dumped in your lap? I made a hasty retreat without any explanation and ran back to my room to read the letter. The letter was a list of "10 Things I'm Sorry For". It was something like, I'm sorry Barney's a purple dinosaur, I'm sorry guys have smelly feet, etc. The last one was, "I'm sorry you got wet. - Matt".
Roses win a girl's heart real quick. The interest was there, and he told me before I left for break, "We'll talk when we get back to Elim." So I spent the whole break telling myself I wasn't going there, that I was off guys, that I was dreaming it up and he didn't like me. Ha. Was I wrong...
That was late October. In November we had the "talk". I told him I needed time to sort some other stuff out. Then in January, I decided I was over the stuff and he asked me out on January 19th (I think... oh dear, I don't remember). On March 12th we got engaged, and on July 9th we got married. No, I'm not kidding. We were dating less than 2 months and engaged less than 4. And we had Oceana the following April. 9 months and 2 days later. :)
Ok. I find time because it's stress-relief for me. I usually crochet or knit or sew while watching tv. My family is always thrilled when I'm knitting because then they don't have to put subtitles on to watch a movie (when my sewing machine is roaring away). I usually knit from about 8 or 9 till bedtime. Usually bedtime is dependent on when the project is at a good "stopping point". Last night that meant when the hat was done. :)
Patterns. Ohhh baby. I usually have an idea in mind and then google it. No joke. If I want to make a pair of baby pants - like the blue ones in one of the recent pictures (I think, if not, in one of tomorrow's pictures) I google "knit baby pants" or "baby pattern knit trousers" until I find something I like. If I'm not find something good that way, then I go to one of my trusty dusty sites. And the list is groooooowing fast. These are the daily stops. No joke. Daily.
www.bevscountrycottage.com - has tons of baby and preemie patterns. Also has fetal demise gowns (ie. babies that are miscarried too early to fit normal clothes). Bev fascilitates preemie and fetal demise wear being given to hospitals that can use it.
www.knittingpatterncentral.com - they have EVERYTHING
www.crochetpatterncentral.com - same set up, just for crochet
www.bernat.com - as in bernat yarn. Lots of cool stuff here, very clear instructions
www.lionbrand.com - TONS of stuff. For bernat and lion brand you have to be a member, but its free, you just have to have an email and password login.
And here's links to some of my other projects.
**How has Joshua changed our family? Me personally?
In respect to our family, I think Joshua has made us want more time as a family. It's made us want to be close-knit, and spend more time together. The night before Joshua was born, Matt brought Oceana into bed with us - on purpose - so that we could all sleep together. It was fitting, we had no idea how long we'd have with Joshua. So we treasured the last little bit that we could.
For me, it's been a wake up call. I guess I thought that having healthy babies was easy. Like, get pregnant, have a baby, and then they grow up. Easy? No. I've become a lot more respectful of women who have miscarried. I've never miscarried, so please don't kill me for what I'm about to say. I used to think that women who miscarried (before 20 weeks) were making it out to be worse than it was. But I know now, that's a total lot of CRAP. Losing a child is losing a child. It doesn't matter if the child was miscarried, died because of an ectoptic pregnancy, was stillb orn, died early, died in childhood, died in adulthood, or died from a terminated pregnancy (for medical reasons) - the heartache is the same! The dreams for your child are still dashed. The place in your heart for them will forever remain empty. Your heart can grow bigger, but that puzzle piece can never be refit, it will always be missing. I have a new-found respect for women who have experienced loss.
I have discovered about myself that a) I do crafts when I'm stressed, b) I love knitting, c) I love writing and want to write a book (more on this later), d) I love my babies more than I could ever express, e) I want to learn photography so I can take better pictures of my children.
On writing a book. Maybe because I'm in New Zealand now, and don't have Barnes and Noble right around the corner, but it seems to me there's a huge hole in the market for women experiencing neonatal death - from any aspect besides miscarriage. My mom almost bought me a book about neonatal death, but she said 80-90% was about miscarriage, and not geared toward my situation. I've decided that at some point I'll take my journals, my blog, and what I've learned and write our story. I don't know if it'd get published. But perhaps that will be my way of remembering everything I could about Joshua.
**Does Joshua's cele hurt him? Um. I'm not sure. He doesn't like putting extra pressure on it (like leaning his head back into it). He flips out when we do that, but he doesn't cry, just flails. He also cries when he sneezes, we think there's something that's causing more pressure when he sneezes. This may or may not be related to his cele.
**What's Matt's and my love story? The person who posted this was at school during our freshman year (when we weren't dating) and came back in March of our junior year and arrived the day our engagement was officially announced (our college did official engagement announcements during chapel). She was confuzzled (confused/puzzled... its a word coz I say so).
Ok. This one's sort of long. To spare some details, I'll just say that I was dating someone when I left for college in Feb 2003. We dated through our freshman year and then broke up during the summer. I say this only to clarify that I hadn't even "scoped" out the guys in our class before junior year. When I first came to visit the campus in Feb 03, there was this rather bored-looking guy there with his youth pastor, also visiting. He sat in the back of the room at all the little events, slouching and looking "tough". Apparently he [Matt] scoped me out then - and made some comment after we were married about how he'd told himself he'd never be with someone as gorgeous as me. Maybe he was searching for brownie points that day, maybe it's true. :) Aw.... how cute! Anyways. So we arrived back on campus from the freshman-junior summer, and Matt's first words to his roommate were "Did Susie and X break up?" (He says he has no idea why he said it, or why it was the first thing out of him mouth).
The first 7 weeks of our junior year our whole class was in NYC doing an internship, and so we (class of 65!) got to know each other really well. While we were there (September in NYC, it was blazing hot!) a bunch of us got into a big waterfight. It carried over several weeks, and got rather crazy. I was out to get Matt back for something, and found a Gatorade jug - the big ones they empty out over the Superbowl coach's head - and went to dump it on Matt with a friend's help. I was standing behind a wall, waiting for him to come around. The idea was the slosh the whole thing on him. Instead, he walked too far around and saw me, so he wouldn't come over. Just then, one of his friends came behind me and grabbed it up. And dumped it on me. Jonny Wiedel, I'm still grumpy. :) I splooshed my way upstairs and felt rather embarrassed. That night I was sitting in a room talking with about 6 girls when my friend Danielle walked in with three long step roses and a letter. She plopped them on my lap and I about died. What do you say when you're sitting with a bunch of girls and you get roses dumped in your lap? I made a hasty retreat without any explanation and ran back to my room to read the letter. The letter was a list of "10 Things I'm Sorry For". It was something like, I'm sorry Barney's a purple dinosaur, I'm sorry guys have smelly feet, etc. The last one was, "I'm sorry you got wet. - Matt".
Roses win a girl's heart real quick. The interest was there, and he told me before I left for break, "We'll talk when we get back to Elim." So I spent the whole break telling myself I wasn't going there, that I was off guys, that I was dreaming it up and he didn't like me. Ha. Was I wrong...
That was late October. In November we had the "talk". I told him I needed time to sort some other stuff out. Then in January, I decided I was over the stuff and he asked me out on January 19th (I think... oh dear, I don't remember). On March 12th we got engaged, and on July 9th we got married. No, I'm not kidding. We were dating less than 2 months and engaged less than 4. And we had Oceana the following April. 9 months and 2 days later. :)
Monday, January 28, 2008
??? Questions ??? 2
How did Oceana get her name?
Ocean[i]a is a continental area. It's Australia, New Zealand, and the Pacific Islands. Because it's not a continent - such as Europe or South America - it's a general area. Since I moved here when I was 14, I always thought it was a really cool name. It's been on my "I-wanna-name-my-babies-that" list since I was about 15. It's also the name of a Naval base in Norfolk or Virginia Beach, VA. I lived in Virginia Beach for about six years. We had lots of Navy friends, and so I knew the name of that base. It means "From the sea". I know - duh! We spelled it without the "i" because people who've never seen it try to pronounce it "O-she-an-ee-uh". Ugh. It's pronounced "O-she-an-uh". And not O-see-an-uh either. Her middle name is Faith. I always thought it would be neat to have three daughters and have their middle names be Faith, Grace, and Joy (or Hope... or maybe I'll need to have 4 girls). Also, my youth pastor from high school's name was Carlee Faith. I never said it out loud, but in my heart, she's named after Carlee.
Joshua's a bit different. The day we went for our first scan (before we had any idea what was going on) both Matt and I got a chance to spend out morning praying and seeking God. During that day God gave Matt the name Joshua Matthew. We (again) had no idea what was going on, or even if he was a boy or not.
Matt has always wanted to name a boy Joshua - and tried to name Oceana Brian Joshua, but I didn't want to. Her name would have been Owen Joshua - except that it was the initials O.J. - so that name got kiboshed too. (We went to the hospital hoping it was a girl because we had no boy name!) I was never hot on the name Joshua because there are (no offense!) a GADZILLION Josh's in the world. That's one reason I don't call him Josh. (I'm not offended if you do though). One of Matt's best friends was Josh G., so that's been one of his major reasons in wanting a Joshua. Matthew is - obviously - Matt's name. But he has NEVER wanted to name a baby after him. I've always popped his name into every single boy name (Matthew and Joseph, his middle name). But he always shot them down. Anyways. So, God gave him that name.
We left two hours later for our scan, and found out the devastating news. We were planning not to find out the sex, but when we realized it was a bad situation, we asked. So we got in the car and the first words out of my mouth were, "What's his name?" I needed Joshua to have a name, to be real, to be tangible. Matt said nothing until we got home and then he handed me his notebook with the words boxed off "Joshua Matthew". Below Joshua were the words "Strong and Courageous" (thus the name for our blog - read Joshua chapter 1 if you're curious about this!) and below Matthew was "God's Gift". Matthew means God's gift - and both my boys certainly are. Joshua actually means "Jehovah [God] saves". Perfect name for a perfect boy. And he was Joshua from the on.
What will happen to Joshua that would cause him to pass away? (Ie. He's so healthy now, what's going to happen at the end that will be so bad?)
Most likely Joshua will develop a brain infection. The meninges (membrane) over the cele is extremely thin, and very susceptible to the elements. If any bacteria gets into a scratch, or a scab that opens up (like when he's leaking CSF) he could get an infection. The problem is that, normally the body fights infection pretty well. That's why you get fevers (the body's trying to kill the bacteria) and puss (white blood cells fighting the bacteria). If the body cannot fight infection (either naturally or with antibiotics) it can develop septicemia (an infection of the blood) which is potentially fatal.
But brain infection is different. Brain infection can present as any one of these:
"Meningitis is the inflammation of the meninges—the surrounding 3-layered membranes of the brain and spinal cord, and the fluid it is bathed in, called cerebrospinal fluid (CSF).
"Encephalitis is an inflammation of the brain itself."
Myelitis actually means a spinal cord inflammation."
Abscess is an accumulation of infectious material and offending microorganisms within the CNS." (emedicinehealth.com)
Brain infection moves very quickly. Antibiotics might not even make a difference for Joshua. And quite honestly, it's an inevitable situation. If he doesn't succumb to infection one day, it'll be another day. This is what the doctors have told me. I don't do much reading on it, because I don't really want to know.
And most likely his body will just start to shut down - ie. his breathing and his heart most likely.
Ocean[i]a is a continental area. It's Australia, New Zealand, and the Pacific Islands. Because it's not a continent - such as Europe or South America - it's a general area. Since I moved here when I was 14, I always thought it was a really cool name. It's been on my "I-wanna-name-my-babies-that" list since I was about 15. It's also the name of a Naval base in Norfolk or Virginia Beach, VA. I lived in Virginia Beach for about six years. We had lots of Navy friends, and so I knew the name of that base. It means "From the sea". I know - duh! We spelled it without the "i" because people who've never seen it try to pronounce it "O-she-an-ee-uh". Ugh. It's pronounced "O-she-an-uh". And not O-see-an-uh either. Her middle name is Faith. I always thought it would be neat to have three daughters and have their middle names be Faith, Grace, and Joy (or Hope... or maybe I'll need to have 4 girls). Also, my youth pastor from high school's name was Carlee Faith. I never said it out loud, but in my heart, she's named after Carlee.
Joshua's a bit different. The day we went for our first scan (before we had any idea what was going on) both Matt and I got a chance to spend out morning praying and seeking God. During that day God gave Matt the name Joshua Matthew. We (again) had no idea what was going on, or even if he was a boy or not.
Matt has always wanted to name a boy Joshua - and tried to name Oceana Brian Joshua, but I didn't want to. Her name would have been Owen Joshua - except that it was the initials O.J. - so that name got kiboshed too. (We went to the hospital hoping it was a girl because we had no boy name!) I was never hot on the name Joshua because there are (no offense!) a GADZILLION Josh's in the world. That's one reason I don't call him Josh. (I'm not offended if you do though). One of Matt's best friends was Josh G., so that's been one of his major reasons in wanting a Joshua. Matthew is - obviously - Matt's name. But he has NEVER wanted to name a baby after him. I've always popped his name into every single boy name (Matthew and Joseph, his middle name). But he always shot them down. Anyways. So, God gave him that name.
We left two hours later for our scan, and found out the devastating news. We were planning not to find out the sex, but when we realized it was a bad situation, we asked. So we got in the car and the first words out of my mouth were, "What's his name?" I needed Joshua to have a name, to be real, to be tangible. Matt said nothing until we got home and then he handed me his notebook with the words boxed off "Joshua Matthew". Below Joshua were the words "Strong and Courageous" (thus the name for our blog - read Joshua chapter 1 if you're curious about this!) and below Matthew was "God's Gift". Matthew means God's gift - and both my boys certainly are. Joshua actually means "Jehovah [God] saves". Perfect name for a perfect boy. And he was Joshua from the on.
What will happen to Joshua that would cause him to pass away? (Ie. He's so healthy now, what's going to happen at the end that will be so bad?)
Most likely Joshua will develop a brain infection. The meninges (membrane) over the cele is extremely thin, and very susceptible to the elements. If any bacteria gets into a scratch, or a scab that opens up (like when he's leaking CSF) he could get an infection. The problem is that, normally the body fights infection pretty well. That's why you get fevers (the body's trying to kill the bacteria) and puss (white blood cells fighting the bacteria). If the body cannot fight infection (either naturally or with antibiotics) it can develop septicemia (an infection of the blood) which is potentially fatal.
But brain infection is different. Brain infection can present as any one of these:
"Meningitis is the inflammation of the meninges—the surrounding 3-layered membranes of the brain and spinal cord, and the fluid it is bathed in, called cerebrospinal fluid (CSF).
"Encephalitis is an inflammation of the brain itself."
Myelitis actually means a spinal cord inflammation."
Abscess is an accumulation of infectious material and offending microorganisms within the CNS." (emedicinehealth.com)
Brain infection moves very quickly. Antibiotics might not even make a difference for Joshua. And quite honestly, it's an inevitable situation. If he doesn't succumb to infection one day, it'll be another day. This is what the doctors have told me. I don't do much reading on it, because I don't really want to know.
And most likely his body will just start to shut down - ie. his breathing and his heart most likely.
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'I have an honest question. I can't help but think that for every day is is alive that it is going to be that much harder when he goes to be with the Lord. How do you think you will handle it when he passes? Do you ever "forget" that that time will come sooner rather than later?"