We finally got rid of the colds (or URTI's - upper respiratory tract infections. Somewhere along the line I have started talking in acronyms)
We are waiting for our general surgeon to get back from holidays and give us a surgery date....how dare he have a life!
There is sunshine.
There are dimples.
There are zoos.
Life is beautiful.
And hopefully in a few weeks there will be substantially less vomit.
Showing posts with label Update. Show all posts
Showing posts with label Update. Show all posts
Thursday, May 10, 2012
Friday, March 23, 2012
A tale of tubes and tanties
There are two basic feeding tubes that go through the nose.
One is an NG tube which passes through the nose into the stomach. This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason. Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go. It is not that hard to do and a "lay person" can be trained to do this at home.
The other tube is an NJ tube. This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine. It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ. This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place. Do not try this at home kids.
Kaylee has the second of these two tubes.
This is not a fact that I relish.
I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door. In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.
Because that's what us parents do.
We advocate for our kids.
But Kaylee needs this NJ tube. I am convinced beyond a shadow of a doubt and believe me I took some convincing. I was a very hard sell. They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day. They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray. There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid. They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively. They had to work hard to convince me that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.
The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out. The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs. And research and experience shows that Kaylee's reflux is only going to get worse.
So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.
Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth. We will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball. It will mean no more NJ.
This is our next step.
And I am very ready to take it.
We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn. So we are going home to wait and come back to Melbourne and do this thing. And I will not be sad to say goodbye to our NJ.
One is an NG tube which passes through the nose into the stomach. This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason. Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go. It is not that hard to do and a "lay person" can be trained to do this at home.
The other tube is an NJ tube. This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine. It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ. This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place. Do not try this at home kids.
Kaylee has the second of these two tubes.
This is not a fact that I relish.
I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door. In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.
Because that's what us parents do.
We advocate for our kids.
But Kaylee needs this NJ tube. I am convinced beyond a shadow of a doubt and believe me I took some convincing. I was a very hard sell. They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day. They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray. There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid. They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively. They had to work hard to convince me that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.
The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out. The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs. And research and experience shows that Kaylee's reflux is only going to get worse.
So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.
Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth. We will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball. It will mean no more NJ.
This is our next step.
And I am very ready to take it.
We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn. So we are going home to wait and come back to Melbourne and do this thing. And I will not be sad to say goodbye to our NJ.
Tuesday, February 28, 2012
Ready, set....
We have our surgery date for next week. We are in the throes of getting ready to go.
While we are over there for surgery I will not blog every day like I have with other hospitalisations because we will have the kids there with us. Plus, I tend to be a bit of a workaholic and I need to take more regular breaks from the computer.
I will try and keep everyone in the loop but don't panic if I don't post for a day or so - no news will usually be good news and the actual surgery will not take place until toward the end of the week.
If you know us in real life please SMS rather than call as we will want to keep our phone lines free for the hospital to contact us. We will call you back when we have a moment. If you must call, please only call Jon's phone. This will keep at least one phone always free for the hospital to contact us.
If you want to support us during this time, you can:
- Pray, don't underestimate the importance of it.
- Send an e-mail or leave a message in the comments showing your support.
- I have the donations button on the support page functioning for those wanting to show tangible support (but please do not feel obliged - but any donations are accepted with gratitude)
- Give your kids an extra hug and kiss tonight and pray a prayer of thanks.
- If you are local to Melbourne and wish to drop of a prepared meal for a family of two adults and five kiddos, shoot me a message or SMS and I will give you the details of where we are staying. My e-mail address is tasjess (at) gmail (dot) com
- If our kids call you Aunty or Uncle and you want to babysit to give Jon and I a chance to take a walk together, grab dinner or go make out in the car shoot us an SMS. If you are a strange person from internet land who has never met us in real life but really loves kids, thanks but we restrict baby-sitting duty to strange people we know ;)
We would prefer that visitors for Kaylee wait until she is stable in the Koala ward - ICU is a full on place.
This is the big one.
God is ever faithful and good and His hand is over us.
And I may just be peeing my pants a little bit.
While we are over there for surgery I will not blog every day like I have with other hospitalisations because we will have the kids there with us. Plus, I tend to be a bit of a workaholic and I need to take more regular breaks from the computer.
I will try and keep everyone in the loop but don't panic if I don't post for a day or so - no news will usually be good news and the actual surgery will not take place until toward the end of the week.
If you know us in real life please SMS rather than call as we will want to keep our phone lines free for the hospital to contact us. We will call you back when we have a moment. If you must call, please only call Jon's phone. This will keep at least one phone always free for the hospital to contact us.
If you want to support us during this time, you can:
- Pray, don't underestimate the importance of it.
- Send an e-mail or leave a message in the comments showing your support.
- I have the donations button on the support page functioning for those wanting to show tangible support (but please do not feel obliged - but any donations are accepted with gratitude)
- Give your kids an extra hug and kiss tonight and pray a prayer of thanks.
- If you are local to Melbourne and wish to drop of a prepared meal for a family of two adults and five kiddos, shoot me a message or SMS and I will give you the details of where we are staying. My e-mail address is tasjess (at) gmail (dot) com
- If our kids call you Aunty or Uncle and you want to babysit to give Jon and I a chance to take a walk together, grab dinner or go make out in the car shoot us an SMS. If you are a strange person from internet land who has never met us in real life but really loves kids, thanks but we restrict baby-sitting duty to strange people we know ;)
We would prefer that visitors for Kaylee wait until she is stable in the Koala ward - ICU is a full on place.
This is the big one.
God is ever faithful and good and His hand is over us.
And I may just be peeing my pants a little bit.
 |
| Kaylee Grace, rocking the Fauxhawk |
Saturday, January 28, 2012
Update
This week has been tough. On Wednesday Kaylee upped the ante and went from vomiting yellow with a brown tinge and flecks of a coffee ground like substance through it (stomach juices with semi-digested blood) to vomiting what looked like coffee made from dirty water without a filter in the peculator (lots of semi-digested blood). The good days took me off guard because most days she has been upset and vomiting most of the time. We started her on a new drug last night to help her gut motility - to keep her intestines moving things a long. The docs thought perhaps things were backing up and creating pressure in the intestine against the valve from the stomach causing her to become nauseous and reflux. This does make sense because she does get worse just after I give her meds which puts a larger volume through her tube but at the same time she didn't really seem to worsen when the feed rate was put up so I do not think we have a magical fix - but I am willing to give anything a go at this stage. I read the possible side effects before giving it to her which was kind of horrifying (the words "may become permanent condition" beside a particularly debilitating - but thankfully rare - neurological side effect almost put me off) and gave the drug to her anyway. So much of what we do with Kaylee is choosing the lesser of two evils. And this morning DID NOT wake up to the sound of her vomiting and choking for the first time in I don't know how long. It is too early to throw any parties yet, but I am allowing myself a glimmer of hope.
There is still no word on what date we will have the surgery but we will get the call sometime in the next two or three weeks. I have a love/hate relationship with the surgery. I love the thought of it being done and being able to focus on some of the other issues - I hate the thought of doing it with a passion.
We have had good moments and fun moments too. Friday is cleaning day when we focus on life skills rather than academics. Anna came up to me at about eleven in the morning and said "We forgot to do history! We have to do history." She is quite taken with the tales of British and Scottish Royalty. I'd say it was because of all the crowns and princesses but the fact that "Bloody Mary" is actually one of her favourite royals is a little disturbing and she got far too excited about tales of the Gunpowder Plot and Guy Fawkes being tortured and beheaded. There is a little element of "off with her head" about that girl.
I have put a cupboard in the girls room to keep craft stuff in - a LOCKED cupboard with a condition that if I find craft elements strewn over the floor I will be confiscating Erin's key! So the girls room is a whole lot more usable now. As I type Erin is painting her paper maché ladybugs she started making before Kaylee was born with Christopher as her apprentice and they both seem to be loving it. It is good to have all her craft stuff organised so perhaps now we can get some project completed.
Billy has graduated to the next reader and has exploded academically. I find kid usually have a moment when they "click" and it all starts falling into place. It is great that he has had that moment as he has been DESPERATE to read for about a year now and discontent to just plug away at it slowly with so many of his favourite books waiting to be read.
Andrew is now well and truly walking and his vocab is exploding. We are getting more than just "Dog....woof-woof" now. The opinionated child had decided that he is feeding himself and outright refuses to eat if someone else tries to feed him. Messy for spaghetti, fried rice, sandwiches...pretty much messy all the time at the moment!
Christopher is now painting Erin's aphids for her (the ladybugs needed something to eat). He has gotten Erin to give him "school work" a few times this week, being discontent with the simple letters and numbers stuff I was having him do. He adores his older siblings and wants to join in on this school work caper.
Here's praying that this week Kaylee will be able to start healing from the damage the reflux was doing to her body, that we will get a call with a date for this surgery, that we will continue to have all the good times we've been having and we will find even more along the way.
Have a good week all!
Saturday, January 07, 2012
update
Happy New Year!
It has been a crazy busy week in which I went exactly NOWHERE.
That is nowhere as in not to the hospital, not to the doctor, not even getting in the car once.
BOOYAH!!!
Very, very happy here.
Kaylee's reflux has not loved the hot weather and we have spent a bit of time cuddling, rocking and cleaning up vomit. Lot of vomit. Lots and lots of vomit actually.
It is heart breaking to see her retching and choking but in between all that she is happy, content and even occasionally giggling! Or making a funny honking noise that I am pretty sure is her version of giggling. She got a new rocker a few days ago which makes her sit up more and that helps the reflux a bit.
Unfortunately there is no way to stop Kaylee's reflux right now. She is on some medication to reduce the acidity to make it less painful and reduce the harm to her body. Reflux is likely to be our longer term adversary. I don't often think much past February and the big heart op (which scares the pants off me but not the surgeons thankfully) but really once we get past the heart op that is when we start changing Kaylee's feeding regime and trying some new things to help her reflux. Unlike her heart problems, which have a definate fix and not much of a long term day to day effect on her life, reflux may have a pretty huge say in how we live our lives from here on in. The fictional conversation in my head goes sort of like this:
Me: Soooo, lots of people with CDLS have major life long issues with reflux, is that right?
The Other Me: Yep, according to my research.
Me: So Kaylee will have major life long issues with reflux?
The Other Me: I don't know.
Me: OK, well, let's say she does. There are things we can do about it right?
The Other Me: A few things.
Me: Like surgery, medications, diet?
The Other Me: Yes
Me: And that will fix it right?
The Other Me: I don't know.
Me: So worst case scenario, how bad can it get?
The Other Me: Really? You really want to put the words "worst case scenario" and "Kaylee" in the same sentence? Have you learned nothing? That never ends well. And anyway, there is no way to know right now.
Me: Right. So you know we MAY be battling this demon for the rest of our lives but you don't know that we will be for sure. You know there are some things that help others in this situation that we may be able to try if we need to but you don't know that any of them will work well for Kaylee. You know that it may not be a problem or it may be really, catastrophically bad or it may be somewhere in between but you have no idea which it will be.
The Other Me: That's right.
Me: You don't know much do you.
The Other Me: I know I love my daughter. I know that together with God and our amazing little family we will fight whatever dragons lie before us. I know she has long lashes, fat rolls and a smile I'd walk over hot coals for. And I know I love my daughter
Me: You said you love your daughter twice.
The Other Me: Yes, I know. That's how much it matters.
Me: Right, well. I guess that you know something then.
The Other Me: I know what matters.
Disclaimer: I don't actually talk to myself ....Oh....Wait....Hang on....Yes I do.....Carry on.
The other kids are all fantastic.
Erin is completing a project on germs and microbiology (school holidays this year will be February and whenever Kaylee's cleft gets fixed - love the flexibility of homeschooling) and is doing a great job. She has really blossomed in the past year and has a confidence about her that is wonderful to see.
Billy is doing great with his reader and is now halfway through the grade 1 readers we have. He is streaking up and seems to grow before my eyes.
Christopher is doing great too and is still Kaylee's biggest fan.
Anna is all of a sudden tall and beautiful and almost three. I can't believe her birthday is in ten days. What happened to my baby girl?
Andrew is joining the ranks of the walking. He is now total BOY and goes at approximately 100 miles an hour whenever awake.
I have a new sewing machine that I am planning on trying out tonight. I bought it to fill in all that spare time I have - HA! I made a funny!
It has been a crazy busy week in which I went exactly NOWHERE.
That is nowhere as in not to the hospital, not to the doctor, not even getting in the car once.
BOOYAH!!!
Very, very happy here.
Kaylee's reflux has not loved the hot weather and we have spent a bit of time cuddling, rocking and cleaning up vomit. Lot of vomit. Lots and lots of vomit actually.
It is heart breaking to see her retching and choking but in between all that she is happy, content and even occasionally giggling! Or making a funny honking noise that I am pretty sure is her version of giggling. She got a new rocker a few days ago which makes her sit up more and that helps the reflux a bit.
Unfortunately there is no way to stop Kaylee's reflux right now. She is on some medication to reduce the acidity to make it less painful and reduce the harm to her body. Reflux is likely to be our longer term adversary. I don't often think much past February and the big heart op (which scares the pants off me but not the surgeons thankfully) but really once we get past the heart op that is when we start changing Kaylee's feeding regime and trying some new things to help her reflux. Unlike her heart problems, which have a definate fix and not much of a long term day to day effect on her life, reflux may have a pretty huge say in how we live our lives from here on in. The fictional conversation in my head goes sort of like this:
Me: Soooo, lots of people with CDLS have major life long issues with reflux, is that right?
The Other Me: Yep, according to my research.
Me: So Kaylee will have major life long issues with reflux?
The Other Me: I don't know.
Me: OK, well, let's say she does. There are things we can do about it right?
The Other Me: A few things.
Me: Like surgery, medications, diet?
The Other Me: Yes
Me: And that will fix it right?
The Other Me: I don't know.
Me: So worst case scenario, how bad can it get?
The Other Me: Really? You really want to put the words "worst case scenario" and "Kaylee" in the same sentence? Have you learned nothing? That never ends well. And anyway, there is no way to know right now.
Me: Right. So you know we MAY be battling this demon for the rest of our lives but you don't know that we will be for sure. You know there are some things that help others in this situation that we may be able to try if we need to but you don't know that any of them will work well for Kaylee. You know that it may not be a problem or it may be really, catastrophically bad or it may be somewhere in between but you have no idea which it will be.
The Other Me: That's right.
Me: You don't know much do you.
The Other Me: I know I love my daughter. I know that together with God and our amazing little family we will fight whatever dragons lie before us. I know she has long lashes, fat rolls and a smile I'd walk over hot coals for. And I know I love my daughter
Me: You said you love your daughter twice.
The Other Me: Yes, I know. That's how much it matters.
Me: Right, well. I guess that you know something then.
The Other Me: I know what matters.
Disclaimer: I don't actually talk to myself ....Oh....Wait....Hang on....Yes I do.....Carry on.
The other kids are all fantastic.
Erin is completing a project on germs and microbiology (school holidays this year will be February and whenever Kaylee's cleft gets fixed - love the flexibility of homeschooling) and is doing a great job. She has really blossomed in the past year and has a confidence about her that is wonderful to see.
Billy is doing great with his reader and is now halfway through the grade 1 readers we have. He is streaking up and seems to grow before my eyes.
Christopher is doing great too and is still Kaylee's biggest fan.
Anna is all of a sudden tall and beautiful and almost three. I can't believe her birthday is in ten days. What happened to my baby girl?
Andrew is joining the ranks of the walking. He is now total BOY and goes at approximately 100 miles an hour whenever awake.
I have a new sewing machine that I am planning on trying out tonight. I bought it to fill in all that spare time I have - HA! I made a funny!
Saturday, December 31, 2011
update
Christmas was wonderful.
All is good here.
Had a quick trip to the hospital earlier in the week because Kaylee pulled her tube part way out (why do these things always happen at 10pm or later?) but other than that we were pretty much home. A few more weeks of that and we may start climbing on top of things around here.
Andrew is walking at last. Anna is besotted with her baby doll we got her for Christmas and makes good use of the bottle, cups, clothes and other accessories that came with her. Christopher has turned a nice golden brown for summer (yes, we do hats and sunscreen but he is naturally dark skinned anyway). Billy is champing at the bit to do some school work. Erin is so grown up it startles me.
.
Here are a few snaps of our Christmas day. I'm afraid I don't have the crazy mad aesthetic skills that some of my other bloggy friends have and few of these pics show the kids faces (hard to get them to look at the camera when they have presents!). But this is us:
All is good here.
Had a quick trip to the hospital earlier in the week because Kaylee pulled her tube part way out (why do these things always happen at 10pm or later?) but other than that we were pretty much home. A few more weeks of that and we may start climbing on top of things around here.
Andrew is walking at last. Anna is besotted with her baby doll we got her for Christmas and makes good use of the bottle, cups, clothes and other accessories that came with her. Christopher has turned a nice golden brown for summer (yes, we do hats and sunscreen but he is naturally dark skinned anyway). Billy is champing at the bit to do some school work. Erin is so grown up it startles me.
.
Here are a few snaps of our Christmas day. I'm afraid I don't have the crazy mad aesthetic skills that some of my other bloggy friends have and few of these pics show the kids faces (hard to get them to look at the camera when they have presents!). But this is us:
Christopher waiting for present opening Christmas Morning
Billy checking out his new pencil case and pencils
Erin helping Kaylee open her presents
THE swing set
a-swingin'and a-jumpin'
And one little boy who thinks ladders are for wusses.
yes, he can make it to the top!
And my best present this year?
Being home with my family.
And one fat....
Fluffy....
Baby.
Saturday, December 24, 2011
update
Well, there is another week done.
Fantastically, we didn't go to the hospital once this week. In fact, Kaylee and I didn't even get in the car this week which was fantastic. Jon, however, had to go out three days in a row this week for various unavoidable reasons which proved to me beyond a doubt that I NEED him home at the moment!
We have been making various Christmas preparations and I am looking forward to seeing the kids open their pressies. We got the a swing set which my Honey will set up tonight! Not the whizz bang spectacular one he'd like to design and build one day but a fun interim measure.
It is HOT today and Kaylee has been refluxing all day. She is finally asleep in my arms completely naked (or as Christopher says - nekid). I have a feeling we will be seeing a bit of the nekid-with-mittens look from Miss Kaylee this summer as the heat seems to make her itch under her tube tape.
Andrew has had his first haircut and is sporting a nice, short, tennis ball style, as is Billy.
We had a huge toy cull yesterday in preparation for Christmas. Quite a few unsentimental soft toys are moving on. A shape sorter (we still have three!), a toy with many-small-parts-that-HURT-when-you-step-on-them and a very cool toy that we had two of will also be finding new homes in the New Year. The company Jon was working with sent home Christmas presents for the kids, most of which are great but I must confess we replaced the doll that "really cries!" with a quieter doll for Anna! I have a suspicion we will be drowning in toys again by next week.
Andrew, Billy, Christopher and Erin hosed each other down as I shelled peas in the sun with Kaylee asleep across my knee this week. It was a perfect, blissful moment with amazing blue summer skies dotted with fluffy white clouds and a gentle breeze. I am so blessed.
Fantastically, we didn't go to the hospital once this week. In fact, Kaylee and I didn't even get in the car this week which was fantastic. Jon, however, had to go out three days in a row this week for various unavoidable reasons which proved to me beyond a doubt that I NEED him home at the moment!
We have been making various Christmas preparations and I am looking forward to seeing the kids open their pressies. We got the a swing set which my Honey will set up tonight! Not the whizz bang spectacular one he'd like to design and build one day but a fun interim measure.
It is HOT today and Kaylee has been refluxing all day. She is finally asleep in my arms completely naked (or as Christopher says - nekid). I have a feeling we will be seeing a bit of the nekid-with-mittens look from Miss Kaylee this summer as the heat seems to make her itch under her tube tape.
Andrew has had his first haircut and is sporting a nice, short, tennis ball style, as is Billy.
We had a huge toy cull yesterday in preparation for Christmas. Quite a few unsentimental soft toys are moving on. A shape sorter (we still have three!), a toy with many-small-parts-that-HURT-when-you-step-on-them and a very cool toy that we had two of will also be finding new homes in the New Year. The company Jon was working with sent home Christmas presents for the kids, most of which are great but I must confess we replaced the doll that "really cries!" with a quieter doll for Anna! I have a suspicion we will be drowning in toys again by next week.
Andrew, Billy, Christopher and Erin hosed each other down as I shelled peas in the sun with Kaylee asleep across my knee this week. It was a perfect, blissful moment with amazing blue summer skies dotted with fluffy white clouds and a gentle breeze. I am so blessed.
Thursday, December 15, 2011
I may need a nap....
I just had the most INSANE few days. On Sunday I took Kaylee over to the Royal Children's Hospital for her Cardio review.
* I missed the plane because I got distracted when Kaylee had a bit of reflux and I had to suction her just before I got in the car and forgot her feed sets (which I can't feed her without) and turned up at the airport 15 minutes after booking had finished.
* The nice Jet Star man took pity on poor little blubbery me who was lugging a suitcase and three bags of designer-baby paraphernalia and changed my flight totally free of charge then let me into the EXECUTIVE LOUNGE and told me to help myself to the free drinks and nibbles for the next four hours! And best of all there was a chair the PERFECT size and shape to put my skein of yarn around while I wound it into a ball.
* On the other end I totally forgot what colour my suitcase was and watched my blue case go past me three times before I realised it was mine. I was about to go and have firm and business like words with someone about my "lost luggage" when I realised. Thankfully my chauffeur thought it was funny. In order to get a car with a baby seat I need to hire a chauffeur to take me to and from the airport and hospital in Melbourne - meaning I have the pleasure of leather seats, very polite drivers who hold a sign with my name on it and a $70 bill! My driver was a very nice, funny guy from South Africa who was one of 11 siblings.
* Kaylee and I stayed in a nice hotel. I had room service, a long hot bath and woke up to Kaylee vomiting stomach juices and needing suctioning 4 times. I think she has a touch of a cold and the snot goes through her cleft into her stomach causing her to reflux. Yes, you can thank me later for that lovely image.
* We went to the new RCH hospital building for the first time and it is SERIOUSLY like disney land with doctors. It is AWESOME. While we waited for the cardiology people we were watching meerkats play in their enclosure!
* Kaylee's surgery is set for next February which is great. I had talked myself into the idea that they were going to admit her and not let me go home so I packed for three months....just in case. I may be a teeny weeny neurotic at the moment.
* Kaylee's (insert unsavory adjective which I would NEVER use) feed tube kinked while I was in having the cardio assessment so rather than spending a few leisurely hours catching up with some cardio pals and checking out the new hospital before flying home late afternoon I spent 7 hours in emergency waiting for them to get a new tube in and didn't fly home until after 9pm eating mainly food from vending machines while I waited.
* Emergency has a TWO STORY aquarium in it. It was fantastic. And I had some beautiful yarn which I happily cast on and knitted to my hearts content.
* I was secretly highly amused by the little boy in emergency who had put a potty seat over his head and gotten stuck. The fire department had to be called in to cut it off and the poor kid screamed blue murder while it was happening but the whole waiting room burst into applause when it was all done. The poor mother looked like she wanted the ground to swallow her up - I was struggling to keep from snorting I was laughing so hard
* I got to educate a doctor, a nurse, and four radiographers about CDLS.
* The insertion of Kaylee's tube was a bit of an ordeal involving tubes coming out of clefts and causing gagging and vomiting and a poor young radiographer freezing like a bunny in headlights. I am considering getting my own lead apron I spend so much time wearing them and the hospital ones make me look a little wide in the hips. The senior radiographer got the job done in the end.
* I got time for a 20 minute fly-by visit with one of our favourite roomies from our RCH stays - a fellow Tassie kid who is heading home THIS WEEK! Yay for them! And I got to sticky beak the new cardio ward which is BEAUTIFUL.
* I got to my plane in the evening with time to spare and tried Krispy Kreme donuts for the first time. I can't say I will be doing that again. I slept the majority of the flight back to Tassie.
* By the time I got home, administered meds, expressed etc it was past 2am. Then the SODDING tube kinked AGAIN!!! ARUGH!!!!
* We called an ambulance because neither Jon nor I would have been safe to drive we were so exhausted. I slept the whole way in to hospital with Kaylee laying on her right side on my chest. Which jiggled her in such a way that the tube un-kinked itself before we got to hospital! Yay!! Inserting the blasted thing is an ordeal that involves a radiologist who doesn't start work until 9am, a temporary NG tube and continuous cardiac monitoring until the radiologist comes in and, in Launceston, me repeating Kaylee's diagnosis and treatment plan approximately 345 times before things get done so I was ecstatic when we got to the hospital and the tube was OK.
* I was then stranded in Launceston General Hospital at 4am. Thankfully they took pity on me and gave me a fold out bed in the parents room and the lend of an IV pole and a pram for Kaylee. I got to sleep somewhere around 5am and woke around 8am to a room full of parents making themselves a coffee.
* I decided to take advantage of the situation and do some paperwork at the hospital and ended up getting home mid-afternoon.
I have got the first significant amount of knitting that I haven't had to frog (undo and start again) done since I had Kaylee and it feels great! I just wasn't in the headspace to knit before now and whenever I tried to cast on I ended up having to frog only a few rows in. It is so lovely to have something growing on the needles again!
Yesterday we had to go into town for a speech therapist, occupational therapist and physiotherapist assessment. They have given me a little wedge type thing to lie Kaylee on, recommended a pillow to help with her head flattening and told me I am doing everything they would recommend and more so I will see them again in March. We had a lovely day with picnics in the park and I am looking forward to not going anywhere for two days now. I'm very tired.
* I missed the plane because I got distracted when Kaylee had a bit of reflux and I had to suction her just before I got in the car and forgot her feed sets (which I can't feed her without) and turned up at the airport 15 minutes after booking had finished.
* The nice Jet Star man took pity on poor little blubbery me who was lugging a suitcase and three bags of designer-baby paraphernalia and changed my flight totally free of charge then let me into the EXECUTIVE LOUNGE and told me to help myself to the free drinks and nibbles for the next four hours! And best of all there was a chair the PERFECT size and shape to put my skein of yarn around while I wound it into a ball.
* On the other end I totally forgot what colour my suitcase was and watched my blue case go past me three times before I realised it was mine. I was about to go and have firm and business like words with someone about my "lost luggage" when I realised. Thankfully my chauffeur thought it was funny. In order to get a car with a baby seat I need to hire a chauffeur to take me to and from the airport and hospital in Melbourne - meaning I have the pleasure of leather seats, very polite drivers who hold a sign with my name on it and a $70 bill! My driver was a very nice, funny guy from South Africa who was one of 11 siblings.
* Kaylee and I stayed in a nice hotel. I had room service, a long hot bath and woke up to Kaylee vomiting stomach juices and needing suctioning 4 times. I think she has a touch of a cold and the snot goes through her cleft into her stomach causing her to reflux. Yes, you can thank me later for that lovely image.
* We went to the new RCH hospital building for the first time and it is SERIOUSLY like disney land with doctors. It is AWESOME. While we waited for the cardiology people we were watching meerkats play in their enclosure!
* Kaylee's surgery is set for next February which is great. I had talked myself into the idea that they were going to admit her and not let me go home so I packed for three months....just in case. I may be a teeny weeny neurotic at the moment.
* Kaylee's (insert unsavory adjective which I would NEVER use) feed tube kinked while I was in having the cardio assessment so rather than spending a few leisurely hours catching up with some cardio pals and checking out the new hospital before flying home late afternoon I spent 7 hours in emergency waiting for them to get a new tube in and didn't fly home until after 9pm eating mainly food from vending machines while I waited.
* Emergency has a TWO STORY aquarium in it. It was fantastic. And I had some beautiful yarn which I happily cast on and knitted to my hearts content.
* I was secretly highly amused by the little boy in emergency who had put a potty seat over his head and gotten stuck. The fire department had to be called in to cut it off and the poor kid screamed blue murder while it was happening but the whole waiting room burst into applause when it was all done. The poor mother looked like she wanted the ground to swallow her up - I was struggling to keep from snorting I was laughing so hard
* I got to educate a doctor, a nurse, and four radiographers about CDLS.
* The insertion of Kaylee's tube was a bit of an ordeal involving tubes coming out of clefts and causing gagging and vomiting and a poor young radiographer freezing like a bunny in headlights. I am considering getting my own lead apron I spend so much time wearing them and the hospital ones make me look a little wide in the hips. The senior radiographer got the job done in the end.
* I got time for a 20 minute fly-by visit with one of our favourite roomies from our RCH stays - a fellow Tassie kid who is heading home THIS WEEK! Yay for them! And I got to sticky beak the new cardio ward which is BEAUTIFUL.
* I got to my plane in the evening with time to spare and tried Krispy Kreme donuts for the first time. I can't say I will be doing that again. I slept the majority of the flight back to Tassie.
* By the time I got home, administered meds, expressed etc it was past 2am. Then the SODDING tube kinked AGAIN!!! ARUGH!!!!
* We called an ambulance because neither Jon nor I would have been safe to drive we were so exhausted. I slept the whole way in to hospital with Kaylee laying on her right side on my chest. Which jiggled her in such a way that the tube un-kinked itself before we got to hospital! Yay!! Inserting the blasted thing is an ordeal that involves a radiologist who doesn't start work until 9am, a temporary NG tube and continuous cardiac monitoring until the radiologist comes in and, in Launceston, me repeating Kaylee's diagnosis and treatment plan approximately 345 times before things get done so I was ecstatic when we got to the hospital and the tube was OK.
* I was then stranded in Launceston General Hospital at 4am. Thankfully they took pity on me and gave me a fold out bed in the parents room and the lend of an IV pole and a pram for Kaylee. I got to sleep somewhere around 5am and woke around 8am to a room full of parents making themselves a coffee.
* I decided to take advantage of the situation and do some paperwork at the hospital and ended up getting home mid-afternoon.
I have got the first significant amount of knitting that I haven't had to frog (undo and start again) done since I had Kaylee and it feels great! I just wasn't in the headspace to knit before now and whenever I tried to cast on I ended up having to frog only a few rows in. It is so lovely to have something growing on the needles again!
Yesterday we had to go into town for a speech therapist, occupational therapist and physiotherapist assessment. They have given me a little wedge type thing to lie Kaylee on, recommended a pillow to help with her head flattening and told me I am doing everything they would recommend and more so I will see them again in March. We had a lovely day with picnics in the park and I am looking forward to not going anywhere for two days now. I'm very tired.
Saturday, December 03, 2011
Not so much easy
You know how last week was easy? This week - not so much!
Not disastrous. Not terrible. Not even bad. But definitely not easy!
Sunday we got our morning's work done then spent the afternoon getting ready to head out to an evening church service....only to arrive and find out that church started at 5pm not 6pm and we were 1 hour and 10 minutes late. Doh.
Monday we were home and flat out just doing the normal stuff. Trying to climb Mount Fold-more, getting some school work done, pumping, meds, laundry, cleaning etc.
Tuesday we dropped the kids off with some dear friends for the day and took Kaylee into Launceston with us to try and sort something with Centrelink. An exercise in smacking one's head against a brick wall. We kept sending the place into a panic because Kaylee's feed pump kept alarming making the same noise as their duress alarms. But we did end up with half the women in the office crowding around Kaylee's pram goo-ing at her. Kaylee cracked a HUGE grin at a light fitting there. The kids had a fabulous time with their Aunty Nola and Uncle Ced (their honorary extra grandparents) playing non-stop. Nola gave the kids stacks of books and movies that her grandchildren no longer use - not to mention a gorgeous doll house which I kind of love (I may have spent a little time playing with it today). We didn't get home until well into the evening and it was late nights all around.
Wednesday we were in town once again for a weekly weigh and measure which went BRILLIANTLY. Kaylee is now 3.6kg and is doing so well my paediatrician is happy to meet every two to three weeks rather than weekly! He is very impressed with the improvement in the range of motion in Kaylee's knees and elbows. We went to the library and ran a few errands then we went home. Late. Again.
Thursday I was looking forward to a quiet day where we would celebrate Billy's unbirthday (we have a special "half way" celebration between birthdays called an unbirthday - Billy turned five and a half) with cake and cuddles and get some practical things done around the house. Unfortunately, things did not go to plan. We had a visitor for a few hours in the early afternoon and then Kaylee's tube blocked. We loaded everyone up and headed into town to hospital. Again. Of course we got there after business hours when the radiographers had gone home so we needed to place a NG tube (into Kaylee's stomach) so we could get medicines and nutrition into Kaylee but we needed to monitor her continuously until we could place the NJ tube (into her intestine) the next day so Kaylee was admitted overnight. And one very sad little boy had to put off his unbirthday cake until the next day.
Friday we spent nearly the whole day trying to get a new tube placed. First simply FINDING one in the hospital was a bit of a feat. NJ tubes in babies aren't very common in Launceston apparently. I spent most of the day getting ahead on paperwork (or getting a little more toward treading water with paperwork!) and working to get Kaylee's tube placed. We finally all got home about 7pm when I made spaghetti and we decorated a cake at the unbirthday boy's request. It is safe to say the kids were wacky. Mum disappearing into hospital with Kaylee brought a lot of big feelings that had been simmering to the surface so we had a little bit of emotional triage to do and chocolate cake was deemed necessary.
Today was like a drink of cool water. Thank the Lord for Sabbath! Guilt free I ignored the work and focussed on resting with my husband, my kids and my beautiful in-laws. Poppy got to hold his little girl for the first time ever and lay eyes on her for the second time ever - the last time was just before she flew out to Melbourne for the first time.
This week was full on and exhausting. I miss the peace of weeks on end at HOME. I would love to spend a week just hanging out with my kids doing nothing but the ordinary. Between having a large number of children and having an adorable tiny baby with a tube taped to her face, anonymity in public places is impossible. I have had the "Oh, was she very prem?" conversation at least fifteen times this week, once at 4am with a nurse. Not a horrible conversation, but every now and then I would like to go out and blend in rather than give spontaneous tutorials on CDLS, genetic syndromes, heart defects. I get tired of saying "No, my daughter is not 'normal' and she is unlikely to be in this world as we know it. But hey, normal is totally overrated." Getting everyone in the car had been streamlined but now with various pumps and meds to be taken into consideration it is a bit logistically challenging. It can take us a good couple of hours to get everything ready and everyone out the door now. Even if we get this next week at home (which I am hoping we will for the most part) ordinary will take a little while to kick in as this week we were only home long enough to make messes, not clean them! My house looks a little like someone picked it up and shook it. At least three days of shovelling mess is needed.
HOWEVER
We had wonderful times at the library, read chapters of our read aloud, spent time with each other and people who we love, Kaylee made progress, Billy turned five and a half and the whole week has been dotted with beauty and love and comfort and wonderfulness amidst the crazy. I think once you have had the PICU experience it changes your outlook completely. For me any week where my kids and husband all breathed, had their heart beat, stayed the right colour and got nutrition into their bodies is pretty OK. A week when we are all together is pretty terrific. A week when a doctor looks at my baby and says "Wow, that's great!" is freaking brilliant.
This week was challenging, exhausting, full on; but it was also pretty brilliant.
Not disastrous. Not terrible. Not even bad. But definitely not easy!
Sunday we got our morning's work done then spent the afternoon getting ready to head out to an evening church service....only to arrive and find out that church started at 5pm not 6pm and we were 1 hour and 10 minutes late. Doh.
Monday we were home and flat out just doing the normal stuff. Trying to climb Mount Fold-more, getting some school work done, pumping, meds, laundry, cleaning etc.
Tuesday we dropped the kids off with some dear friends for the day and took Kaylee into Launceston with us to try and sort something with Centrelink. An exercise in smacking one's head against a brick wall. We kept sending the place into a panic because Kaylee's feed pump kept alarming making the same noise as their duress alarms. But we did end up with half the women in the office crowding around Kaylee's pram goo-ing at her. Kaylee cracked a HUGE grin at a light fitting there. The kids had a fabulous time with their Aunty Nola and Uncle Ced (their honorary extra grandparents) playing non-stop. Nola gave the kids stacks of books and movies that her grandchildren no longer use - not to mention a gorgeous doll house which I kind of love (I may have spent a little time playing with it today). We didn't get home until well into the evening and it was late nights all around.
Wednesday we were in town once again for a weekly weigh and measure which went BRILLIANTLY. Kaylee is now 3.6kg and is doing so well my paediatrician is happy to meet every two to three weeks rather than weekly! He is very impressed with the improvement in the range of motion in Kaylee's knees and elbows. We went to the library and ran a few errands then we went home. Late. Again.
Thursday I was looking forward to a quiet day where we would celebrate Billy's unbirthday (we have a special "half way" celebration between birthdays called an unbirthday - Billy turned five and a half) with cake and cuddles and get some practical things done around the house. Unfortunately, things did not go to plan. We had a visitor for a few hours in the early afternoon and then Kaylee's tube blocked. We loaded everyone up and headed into town to hospital. Again. Of course we got there after business hours when the radiographers had gone home so we needed to place a NG tube (into Kaylee's stomach) so we could get medicines and nutrition into Kaylee but we needed to monitor her continuously until we could place the NJ tube (into her intestine) the next day so Kaylee was admitted overnight. And one very sad little boy had to put off his unbirthday cake until the next day.
Friday we spent nearly the whole day trying to get a new tube placed. First simply FINDING one in the hospital was a bit of a feat. NJ tubes in babies aren't very common in Launceston apparently. I spent most of the day getting ahead on paperwork (or getting a little more toward treading water with paperwork!) and working to get Kaylee's tube placed. We finally all got home about 7pm when I made spaghetti and we decorated a cake at the unbirthday boy's request. It is safe to say the kids were wacky. Mum disappearing into hospital with Kaylee brought a lot of big feelings that had been simmering to the surface so we had a little bit of emotional triage to do and chocolate cake was deemed necessary.
Today was like a drink of cool water. Thank the Lord for Sabbath! Guilt free I ignored the work and focussed on resting with my husband, my kids and my beautiful in-laws. Poppy got to hold his little girl for the first time ever and lay eyes on her for the second time ever - the last time was just before she flew out to Melbourne for the first time.
This week was full on and exhausting. I miss the peace of weeks on end at HOME. I would love to spend a week just hanging out with my kids doing nothing but the ordinary. Between having a large number of children and having an adorable tiny baby with a tube taped to her face, anonymity in public places is impossible. I have had the "Oh, was she very prem?" conversation at least fifteen times this week, once at 4am with a nurse. Not a horrible conversation, but every now and then I would like to go out and blend in rather than give spontaneous tutorials on CDLS, genetic syndromes, heart defects. I get tired of saying "No, my daughter is not 'normal' and she is unlikely to be in this world as we know it. But hey, normal is totally overrated." Getting everyone in the car had been streamlined but now with various pumps and meds to be taken into consideration it is a bit logistically challenging. It can take us a good couple of hours to get everything ready and everyone out the door now. Even if we get this next week at home (which I am hoping we will for the most part) ordinary will take a little while to kick in as this week we were only home long enough to make messes, not clean them! My house looks a little like someone picked it up and shook it. At least three days of shovelling mess is needed.
HOWEVER
We had wonderful times at the library, read chapters of our read aloud, spent time with each other and people who we love, Kaylee made progress, Billy turned five and a half and the whole week has been dotted with beauty and love and comfort and wonderfulness amidst the crazy. I think once you have had the PICU experience it changes your outlook completely. For me any week where my kids and husband all breathed, had their heart beat, stayed the right colour and got nutrition into their bodies is pretty OK. A week when we are all together is pretty terrific. A week when a doctor looks at my baby and says "Wow, that's great!" is freaking brilliant.
This week was challenging, exhausting, full on; but it was also pretty brilliant.
Saturday, November 26, 2011
Easy
This week was so.......easy.
Don't get me wrong, it was still busy. Crazy busy. But those two adjectives have described my life for a good few years now so there is a degree of familiarity there. There was the odd mini-disaster. For example the cap came off the medicine port on Kaylee's tube this morning and the pump spent a while feeding Kaylee's rocker instead of feeding Kaylee! There were challenges. We got Kaylee's pram this week. I gave mine away last year because it's been years since I used it, my newborns usually just get put in a baby carrier. The pram itself is fabulous but getting the pump hooked up and hanging the bag so it ran without alarming was a bit of a logistical challenge. We got it going though and spent the a good couple of hours in Kmart. There were no crises, no traumas, no disasters. Our paed is very impressed that we have had two weeks at home without her tube being pulled out!
We are finding our groove, our rhythm, and for the most part I have been pleasantly surprised how like our old normal our new normal is. While I am expressing I have someone or other on my knee or sitting beside me going through their school work or reading with them. We have celery on the kitchen bench drinking food dye (our current science project - the kids have managed to make some fabulous multicoloured celery), home-made Christmas cards half finished and aside from Mount Fold-more on the couch and a disaster area that is my bedroom the house actually has some form of order to it.
And the kids are pretty fabulous.
I do some range of motion exercises with Kaylee twice a day and at least one of those times we do them in a warm bath (she loves her bath!) so when I get her ready for her bath I often talk to her about her 'aqua-aerobics'. Today Christopher asked her if she wanted to do her 'aqua-batics'. That kid cracks me up.
Anna sings Kaylee songs of her own composition. My favourite has to be the 'Settle Down Song'. It consists of two lyrics - 'settle' and 'down' sung at a very high pitch. The thing that cracks me up the most is that it works.
We went to Kmart this week so the kids could spend some money that they got. Billy found a toy dinosaur left on a random shelf and fell in love with it. The thing was meant to make noise but did not so we found them on the shelf and found one that worked - no joke it sounded like an evacuation siren. Billy opted to buy the one that DIDN'T work! He was quite upset when we got it home and a few days later it started working again and cried until I told him I'd take out the batteries for him.
We've been learning a bit of sign language so we are familiar with it if Kaylee needs it as she grows (a lot of kids with CDLS have speech difficulties) and Andrew is already picking up a few signs the smarty pants!
Erin and I watched Bambi 2 for our girls night (her choice, not a cinematic masterpiece but we had a great night) and we bought a big bag of marshmallows. She spent the next few days making hot chocolates for the other kids and floating her special marshmallows in them.
Kaylee has started reaching out to touch her toy Mr Flutterby and is becoming more and more interactive. She is utterly precious.
We have had our emotional and clingy moments to but they are the exception rather tan the rule.
Having a full freezer has definitely helped (thanks Anita and Christina especially!) and having my fabulous hubby home for a time has been wonderful. He went back yesterday to work for a day and we all missed each other lots! I did heaps of tidying and organising before Kaylee was born and it is paying dividends now.
Things may change even from day to day but right now it is all so easy and good I can hardly believe it.
Don't get me wrong, it was still busy. Crazy busy. But those two adjectives have described my life for a good few years now so there is a degree of familiarity there. There was the odd mini-disaster. For example the cap came off the medicine port on Kaylee's tube this morning and the pump spent a while feeding Kaylee's rocker instead of feeding Kaylee! There were challenges. We got Kaylee's pram this week. I gave mine away last year because it's been years since I used it, my newborns usually just get put in a baby carrier. The pram itself is fabulous but getting the pump hooked up and hanging the bag so it ran without alarming was a bit of a logistical challenge. We got it going though and spent the a good couple of hours in Kmart. There were no crises, no traumas, no disasters. Our paed is very impressed that we have had two weeks at home without her tube being pulled out!
We are finding our groove, our rhythm, and for the most part I have been pleasantly surprised how like our old normal our new normal is. While I am expressing I have someone or other on my knee or sitting beside me going through their school work or reading with them. We have celery on the kitchen bench drinking food dye (our current science project - the kids have managed to make some fabulous multicoloured celery), home-made Christmas cards half finished and aside from Mount Fold-more on the couch and a disaster area that is my bedroom the house actually has some form of order to it.
And the kids are pretty fabulous.
I do some range of motion exercises with Kaylee twice a day and at least one of those times we do them in a warm bath (she loves her bath!) so when I get her ready for her bath I often talk to her about her 'aqua-aerobics'. Today Christopher asked her if she wanted to do her 'aqua-batics'. That kid cracks me up.
Anna sings Kaylee songs of her own composition. My favourite has to be the 'Settle Down Song'. It consists of two lyrics - 'settle' and 'down' sung at a very high pitch. The thing that cracks me up the most is that it works.
We went to Kmart this week so the kids could spend some money that they got. Billy found a toy dinosaur left on a random shelf and fell in love with it. The thing was meant to make noise but did not so we found them on the shelf and found one that worked - no joke it sounded like an evacuation siren. Billy opted to buy the one that DIDN'T work! He was quite upset when we got it home and a few days later it started working again and cried until I told him I'd take out the batteries for him.
We've been learning a bit of sign language so we are familiar with it if Kaylee needs it as she grows (a lot of kids with CDLS have speech difficulties) and Andrew is already picking up a few signs the smarty pants!
Erin and I watched Bambi 2 for our girls night (her choice, not a cinematic masterpiece but we had a great night) and we bought a big bag of marshmallows. She spent the next few days making hot chocolates for the other kids and floating her special marshmallows in them.
Kaylee has started reaching out to touch her toy Mr Flutterby and is becoming more and more interactive. She is utterly precious.
We have had our emotional and clingy moments to but they are the exception rather tan the rule.
Having a full freezer has definitely helped (thanks Anita and Christina especially!) and having my fabulous hubby home for a time has been wonderful. He went back yesterday to work for a day and we all missed each other lots! I did heaps of tidying and organising before Kaylee was born and it is paying dividends now.
Things may change even from day to day but right now it is all so easy and good I can hardly believe it.
Saturday, November 19, 2011
An update and a Thankyou.
Kaylee is doing everything she should and nothing she shouldn't.
Her feeds have gone up to 25ml per hour over 22 hours which gives us three hours a day disconnected from the feed pump which is awesome. I have a love-hate relationship with the feed pump and breast pump. Kaylee spends 22 hours a day hooked up to a pump, I spend 6-8 hours a day hooked up to a pump. We're all about the pumping! I love that we can feed her this easily - not so long ago Kaylee would have had to stay in hospital until after she got over needing continuous feeds because she would have had to have a nurse sitting by her bedside 24 hours a day pushing in her feed. I love that my milk is going in to Kaylee and that it is helping and protecting her. Right now it is all Mama milk with no alterations. It is sort of like having a really close friendship via e-mail. I am constantly swirling her bag and poking it so as much cream as possible will go down the tube rather than stick to the inside of the bag. We have worked out how to hang feed in the car and my breast pump also plugs into the lighter socket in the car which makes us fully portable.
I put her to my breast about twice a day for some 'oral play' so she can pretend to feed. This helps her mouth muscles to keep working and helps her associate good and happy things with having things in her mouth. Many kids who are exclusively tube fed develop oral aversions where they hate anything going in or near their mouth. This gets to be a bit of a problem when it comes time for them to actually start eating. I have a vague hope that perhaps after her surgeries she may start to feed direct for at least some of her food intake but it's a long shot and we will have to see how we go. Seeing as Kaylee is being constantly fed she never feels hungry. This means she sleeps a lot with no hunger pangs to wake her for feeds and cuddles. I make the decision several times a day to let her sleep (which she needs in order to grow and get big enough for her surgeries) or wake her for cuddles and play (which she needs for cognitive and physical stimulation and development). I check her tube about twenty times a day to make sure it hasn't moved and I tend to fret about it first if she is upset for an extended period which is silly because it doesn't hurt her and is unlikely to move unless someone moves it. But a tube is a tube and while we are positively minimalist in the tube department compared to the last couple of months it is a yellow reminder lying across her face every time I look at her of the road we have travelled and some of the big hills (known and unknown) that are yet to come.
Kaylee herself is delightful. Her eyelashes go on FOREVER! She found her hand last night and I spent a good ten minutes or more just sitting watching her watch her hand. Her brothers and sisters adore her and it is rare that she isn't the centre of someone's attention. She is still in size 00000 clothes but there is one garment that she has grown out of. She is quite the fashionista and the big kids love to choose her hair clips and clothes whenever they are allowed. I would swear that sometimes she is smiling although it is hard to tell because the corners of her mouth naturally turn down and often when I think she's smiling she has her dummy in her mouth. She also farts like a champ much to the delight of her brothers.
The bigger kids are wonderful. We did a science experiment this past week where we put celery into food dye solutions and the four oldest had a blast. Unfourtunately a couple of the kids had explosive diarrhoea this week which made things.....messy. But through copious use of hand sanitiser etc. Kaylee, Billy and I managed to avoid it and everyone is recovered. We are getting into something resembling a routine now. We have started a new read aloud (Danny Champion of the World by Roald Dahl). We watched a couple of movies yesterday but for the most part their screen time has been infrequent simply because the rest of our life is so full and rich.
It has been odd finding a new normal. Life BK (Before Kaylee) saw me changing 95% of the nappies (yes, I was that possessive over changing nappies) and doing the bulk of the cooking and cleaning while Jon worked ten hour days four days a week. When he was home we would all spend time together working on projects or going on road trips. At the moment Jon is home all the time and is changing at least as many nappies as me (more during the explosive period) and doing as much if not more cooking and cleaning. As we settle in more I would like to take more of my old job back.
To be honest, when we were in the hospital I missed cooking and cleaning a lot. I regretted not spending more time doing it when I was home. I have come to realise all that time I spent putting off those tasks then being frustrated because my home was less than pleasant was so wasted. The effort taken to just get in and do it was insignificant compared to the reward. I have come to appreciate the small comfort of a tidy home, clean clothes and a hot meal so much more than I thought possible and I resent the wasted opportunities in my past where I could have had these things with minimal effort. There is a saying "you don't know how strong you are until you have to be strong". It could also be said "you don't know how hard you can work until you have to work hard". When we were in the hospital I worked 14-16 hour days most days and I worked harder than I ever have before. And it didn't kill me. The effort to get up and wash the dishes or fold a load of washing seems so small in comparison. Now days amid the strange mix of pumping, meds and normal life I am usually up somewhere between 5am and 6am and falling into bed somewhere between 10pm and 11pm on a good night (at times, later) and although my baby sleeps through most nights, her feed pump doesn't! Compared to what I am doing now, what I was doing was a cruise. But my day is full of cuddles, smiles, conversation and impossibly long eye lashes - and all of us together again.
I need to take a moment to shout out a big thankyou. To be honest, I am not totally sure who I am thanking for what because during the blur of those weeks when Kaylee was in hospital we experienced a huge influx of generosity. People blessed us with gifts, some I asked for through the blog but most were totally unasked for. Much of what we have I have lost track of who gave it to us. My freezer is full of food (two dear friends in particular went above and beyond the call cooking us up a storm!). Kaylee is the best dressed baby about. We are about to drown in clothes for the other kids. I have the most beautiful shawl and crochet layette that my Ravelry forum sent me as well as yarn and needles dropped off for me at the hospital by friends who I am yet to meet. People from my Homeschooling forum also poured out generosity over me while I was in Melbourne with food and other practical help as well as prayers. The lovely Bek was a super pit crew chief during that first Melbourne stay when my world was imploding. Friends and family watched my kids and helped Jon out in practical ways. Jon's old work collegues passed the hat around to send us gift vouchers for Mother's Direct and cloth nappies which has enabled us to save huge amounts of money by having Kaylee in cloth nappies for the majority of the time (a bottom that small requires teeny tiny nappies!) and helped us buy some practical items for Kaylee's day-to-day care and some literature to help inform us. Many, many people surrounded us in prayer.
We have also had a number of people give us money. We are doing OK with our day-to-day expenses for the most part so we are hoping to be able to keep the majority of the monetary donations to help pay for our whole family to stay in Melbourne together during Kaylee's next heart operation. This feels like an unspeakable luxury. Leaving my other kids for an indefinite period again seems like an almost impossible thing to do and having Kaylee and I disappear would not be good for Jon or the kids either. The Royal Children's Hospital will be in their new building by the time we get over there again with a two story fish tank, meerkat enclosure and fabulous set up to entertain sick kids and their siblings. We also have family and friends over there who will be happy to help us out if we need it so it makes sense for us all to be in Melbourne and I pray that it is possible to do this. I am certainly not asking for people to give us money, but I did want to let those who have given us money know what we plan to do with it and express my appreciation.
So thank you all of you. Those who have prayed. Those who have chipped in practically. Those who have simply sent a few words of encouragement at the right time. I am glad to be sharing our journey with such an amazing bunch of people.
Her feeds have gone up to 25ml per hour over 22 hours which gives us three hours a day disconnected from the feed pump which is awesome. I have a love-hate relationship with the feed pump and breast pump. Kaylee spends 22 hours a day hooked up to a pump, I spend 6-8 hours a day hooked up to a pump. We're all about the pumping! I love that we can feed her this easily - not so long ago Kaylee would have had to stay in hospital until after she got over needing continuous feeds because she would have had to have a nurse sitting by her bedside 24 hours a day pushing in her feed. I love that my milk is going in to Kaylee and that it is helping and protecting her. Right now it is all Mama milk with no alterations. It is sort of like having a really close friendship via e-mail. I am constantly swirling her bag and poking it so as much cream as possible will go down the tube rather than stick to the inside of the bag. We have worked out how to hang feed in the car and my breast pump also plugs into the lighter socket in the car which makes us fully portable.
I put her to my breast about twice a day for some 'oral play' so she can pretend to feed. This helps her mouth muscles to keep working and helps her associate good and happy things with having things in her mouth. Many kids who are exclusively tube fed develop oral aversions where they hate anything going in or near their mouth. This gets to be a bit of a problem when it comes time for them to actually start eating. I have a vague hope that perhaps after her surgeries she may start to feed direct for at least some of her food intake but it's a long shot and we will have to see how we go. Seeing as Kaylee is being constantly fed she never feels hungry. This means she sleeps a lot with no hunger pangs to wake her for feeds and cuddles. I make the decision several times a day to let her sleep (which she needs in order to grow and get big enough for her surgeries) or wake her for cuddles and play (which she needs for cognitive and physical stimulation and development). I check her tube about twenty times a day to make sure it hasn't moved and I tend to fret about it first if she is upset for an extended period which is silly because it doesn't hurt her and is unlikely to move unless someone moves it. But a tube is a tube and while we are positively minimalist in the tube department compared to the last couple of months it is a yellow reminder lying across her face every time I look at her of the road we have travelled and some of the big hills (known and unknown) that are yet to come.
Kaylee herself is delightful. Her eyelashes go on FOREVER! She found her hand last night and I spent a good ten minutes or more just sitting watching her watch her hand. Her brothers and sisters adore her and it is rare that she isn't the centre of someone's attention. She is still in size 00000 clothes but there is one garment that she has grown out of. She is quite the fashionista and the big kids love to choose her hair clips and clothes whenever they are allowed. I would swear that sometimes she is smiling although it is hard to tell because the corners of her mouth naturally turn down and often when I think she's smiling she has her dummy in her mouth. She also farts like a champ much to the delight of her brothers.
The bigger kids are wonderful. We did a science experiment this past week where we put celery into food dye solutions and the four oldest had a blast. Unfourtunately a couple of the kids had explosive diarrhoea this week which made things.....messy. But through copious use of hand sanitiser etc. Kaylee, Billy and I managed to avoid it and everyone is recovered. We are getting into something resembling a routine now. We have started a new read aloud (Danny Champion of the World by Roald Dahl). We watched a couple of movies yesterday but for the most part their screen time has been infrequent simply because the rest of our life is so full and rich.
It has been odd finding a new normal. Life BK (Before Kaylee) saw me changing 95% of the nappies (yes, I was that possessive over changing nappies) and doing the bulk of the cooking and cleaning while Jon worked ten hour days four days a week. When he was home we would all spend time together working on projects or going on road trips. At the moment Jon is home all the time and is changing at least as many nappies as me (more during the explosive period) and doing as much if not more cooking and cleaning. As we settle in more I would like to take more of my old job back.
To be honest, when we were in the hospital I missed cooking and cleaning a lot. I regretted not spending more time doing it when I was home. I have come to realise all that time I spent putting off those tasks then being frustrated because my home was less than pleasant was so wasted. The effort taken to just get in and do it was insignificant compared to the reward. I have come to appreciate the small comfort of a tidy home, clean clothes and a hot meal so much more than I thought possible and I resent the wasted opportunities in my past where I could have had these things with minimal effort. There is a saying "you don't know how strong you are until you have to be strong". It could also be said "you don't know how hard you can work until you have to work hard". When we were in the hospital I worked 14-16 hour days most days and I worked harder than I ever have before. And it didn't kill me. The effort to get up and wash the dishes or fold a load of washing seems so small in comparison. Now days amid the strange mix of pumping, meds and normal life I am usually up somewhere between 5am and 6am and falling into bed somewhere between 10pm and 11pm on a good night (at times, later) and although my baby sleeps through most nights, her feed pump doesn't! Compared to what I am doing now, what I was doing was a cruise. But my day is full of cuddles, smiles, conversation and impossibly long eye lashes - and all of us together again.
I need to take a moment to shout out a big thankyou. To be honest, I am not totally sure who I am thanking for what because during the blur of those weeks when Kaylee was in hospital we experienced a huge influx of generosity. People blessed us with gifts, some I asked for through the blog but most were totally unasked for. Much of what we have I have lost track of who gave it to us. My freezer is full of food (two dear friends in particular went above and beyond the call cooking us up a storm!). Kaylee is the best dressed baby about. We are about to drown in clothes for the other kids. I have the most beautiful shawl and crochet layette that my Ravelry forum sent me as well as yarn and needles dropped off for me at the hospital by friends who I am yet to meet. People from my Homeschooling forum also poured out generosity over me while I was in Melbourne with food and other practical help as well as prayers. The lovely Bek was a super pit crew chief during that first Melbourne stay when my world was imploding. Friends and family watched my kids and helped Jon out in practical ways. Jon's old work collegues passed the hat around to send us gift vouchers for Mother's Direct and cloth nappies which has enabled us to save huge amounts of money by having Kaylee in cloth nappies for the majority of the time (a bottom that small requires teeny tiny nappies!) and helped us buy some practical items for Kaylee's day-to-day care and some literature to help inform us. Many, many people surrounded us in prayer.
We have also had a number of people give us money. We are doing OK with our day-to-day expenses for the most part so we are hoping to be able to keep the majority of the monetary donations to help pay for our whole family to stay in Melbourne together during Kaylee's next heart operation. This feels like an unspeakable luxury. Leaving my other kids for an indefinite period again seems like an almost impossible thing to do and having Kaylee and I disappear would not be good for Jon or the kids either. The Royal Children's Hospital will be in their new building by the time we get over there again with a two story fish tank, meerkat enclosure and fabulous set up to entertain sick kids and their siblings. We also have family and friends over there who will be happy to help us out if we need it so it makes sense for us all to be in Melbourne and I pray that it is possible to do this. I am certainly not asking for people to give us money, but I did want to let those who have given us money know what we plan to do with it and express my appreciation.
So thank you all of you. Those who have prayed. Those who have chipped in practically. Those who have simply sent a few words of encouragement at the right time. I am glad to be sharing our journey with such an amazing bunch of people.
Wednesday, December 02, 2009
ANNOUNCING!
Baby number 5 will be making a debut public appearance sometime next June!
We are all, of course, thrilled!
The current order from the older two is a boy or boy/girl twins.
The current order from my friend Dani who just had triplets is twins OR triplets. With twins I will have six under six just like her, with triplets we can share triplet Mummy tips!
The current order from Beloved is one at a time or at least not triplets or we will fill up the new car too fast!
The current order from the Mama person is another quiet one this time around would be lovely seeing as Anna is now in the running for the Loudest Baby Ever (Billy still wins, just!).
But for real? We are so looking forward to meeting this new little person and getting to know him or her just the way he or she is!
We are blessed beyond belief
Thursday, November 12, 2009
Update
Gardening merrily still!
Erin:
bought herself a magic wand yesterday. She had some birthday money still saved up and saw it in the supermarket and fell in love with it. In spite of my dislike of all things plastic and garish, I consented. Only to discover the thing makes NOISE! If you have read this blog at all you will realise just what I think of noisy toys. It has no off switch and every time it is moved it gives a rapid seven note ascending chime - arugh!! She LOVES it. And I love her. So I am putting up with it. It got a lot quieter yesterday when she was waving it over the dishes to "magic" them clean and dropped it in! She has been using it to do all sorts of household chores - cloth in her other hand so she can do it by "slight of hand" while waving the wand!
Billy:
is attached to my hip or in the next room for a week after deciding to "water" various things with the hose last week THAT SHOULD NOT BE WATERED. THREE TIMES. He is in need of a bit of time and attention at the moment I think, having spent too much time heading out to play without direct supervision. He is a charming lad with a great work ethic and a sensitive soul - that sometimes causes one to forget that he is three and he does stuff!
Christopher:
is stringing together lots of sentences at the moment. One of those "language explosions" so common around his age. It makes him even more interactive! He has developed a desire to take a car to bed with him every night. It doesn't matter which car, just a car with wheels! He also discovered a toy car in the Operation Christmas Child boxes we are making up and it took some quick talking to get him to understand that it wasn't his!
Anna:
is getting about very quickly now. She loves gardening and has consumed most of the legendary "ton of dirt" that each child is meant to eat before the age of five! The grot monster. A strong little personality already it is amazing to see her develop. The other day she was jumping around excitedly in my arms giggling then put her mouth to my shoulder like she was going to bite. I said to her "No, don't bite Mum." She looked at me side ways and then grinned. A minute or two later she went to do the same thing and I said the same thing. She looked at me and stuck out her bottom lip and gave a whimper before going back to playing. A minute or two later she actually started to bite my shoulder and I said "No don't bite Mummy!" and tapped her nose with my finger. She crumbled and burst into tears! Don't let anyone tell you that a ten month old can't understand what's going on!
The house:
is still managing to do OK as we are rarely inside to make mess. We spent a bit TOO much time outside last week, but it's all good now.
The garden:
Among a million other things going on, my peonys are flowering the same year I transplanted them! A miracle!
Jess
Erin:
bought herself a magic wand yesterday. She had some birthday money still saved up and saw it in the supermarket and fell in love with it. In spite of my dislike of all things plastic and garish, I consented. Only to discover the thing makes NOISE! If you have read this blog at all you will realise just what I think of noisy toys. It has no off switch and every time it is moved it gives a rapid seven note ascending chime - arugh!! She LOVES it. And I love her. So I am putting up with it. It got a lot quieter yesterday when she was waving it over the dishes to "magic" them clean and dropped it in! She has been using it to do all sorts of household chores - cloth in her other hand so she can do it by "slight of hand" while waving the wand!
Billy:
is attached to my hip or in the next room for a week after deciding to "water" various things with the hose last week THAT SHOULD NOT BE WATERED. THREE TIMES. He is in need of a bit of time and attention at the moment I think, having spent too much time heading out to play without direct supervision. He is a charming lad with a great work ethic and a sensitive soul - that sometimes causes one to forget that he is three and he does stuff!
Christopher:
is stringing together lots of sentences at the moment. One of those "language explosions" so common around his age. It makes him even more interactive! He has developed a desire to take a car to bed with him every night. It doesn't matter which car, just a car with wheels! He also discovered a toy car in the Operation Christmas Child boxes we are making up and it took some quick talking to get him to understand that it wasn't his!
Anna:
is getting about very quickly now. She loves gardening and has consumed most of the legendary "ton of dirt" that each child is meant to eat before the age of five! The grot monster. A strong little personality already it is amazing to see her develop. The other day she was jumping around excitedly in my arms giggling then put her mouth to my shoulder like she was going to bite. I said to her "No, don't bite Mum." She looked at me side ways and then grinned. A minute or two later she went to do the same thing and I said the same thing. She looked at me and stuck out her bottom lip and gave a whimper before going back to playing. A minute or two later she actually started to bite my shoulder and I said "No don't bite Mummy!" and tapped her nose with my finger. She crumbled and burst into tears! Don't let anyone tell you that a ten month old can't understand what's going on!
The house:
is still managing to do OK as we are rarely inside to make mess. We spent a bit TOO much time outside last week, but it's all good now.
The garden:
Among a million other things going on, my peonys are flowering the same year I transplanted them! A miracle!
Jess
Thursday, November 05, 2009
Update
Erin:
opted out of going to after school activities this week. She has been enjoying an after school program at the school across the road for a while now. They play games and do exercises and it gives her a chance to catch up with friends in the community. We started sending her partially because she wasn't seeing any of her little friends now that they all started school (apparently going to school tuckers five year olds out and they don't have energy for a social life - this is me staying off my soap box about homeschooling and "socialisation") and also I like the idea of her having structured, supervised activities with other kids as she gets older - although I haddn't planned to start her on any this year. She was also feeling quite deprived watching everyone go to school WITHOUT HER (the local school is accross the road) and while I stand by our decision to homeschool 100% I did NOT want her to feel that she was completely isolated from kids her own age. So off she has been toddling every week for the last couple of months, with breaks for school holidays and family holidays. When she's been asked if she goes to school yet, she answers "Yes, I go once a week to Active After School!" and has shown every indication that she has been thriving on it. This week however Erin has opted to stay home instead. Why? She is worried that we will do something fun at home without her!!! She cracks me up. It seems we are just as fun as school, if not a little more so!
Billy:
has been having a series of lapses in judgement for the last, oh, fortnight! Really silly decisions like deciding to tear up the flyscreen in his room to throw out toys (toys were confiscated amid other consequences, including his beloved Red Bear for 24 hours). This is just an example among SEVERAL bad decisions the poor lad has made lately. On Sunday he went with his Dad for the day to drive in and get mushroom compost for the garden and spent the day working with him. I won't say that solved the issue, but it has made a difference. Where Christopher will stomp and yell aggressively, Billy will burst into tears and sook to get his own way, the challenge is to recognise it for what it is and react accordingly. He has spent a fair bit of time climbing a shrub in the backyard and I am sure he is part gibbon the way he can swing around in that thing! He is a marvel to watch.
Christopher:
really IS old enough to start toilet training and move into a big boy bed. I keep making excuses to put it off, but it is getting silly. As soon as the back door is usable again for fast access from the back yard we are starting with the toilet training (I HATE toilet training, any good tips are most welcome). As for the bed, we are just waiting for a guard and ladder on the top bunk then he can move out, Anna can get the cot and the portacot can be folded away!
Anna:
The crawling, five toothed wonder kept me up most of last night and I have NO IDEA why. My usually happy baby who sleeps through the night was neither last night. No fever, no possability that she has swallowed anything she shouldn't have (as far as I know!). My only guess is another tooth to even things up to six! Yesterday she was raced up and down the footpath in her pram by Billy as I painstakingly dug out our front weed patch - oops, GARDEN - and she loved it. Another one with a need for speed I think!
Our house:
was doing so well until last night when I decided to leave the dishes a bit late, then went to bed instead! Beloved is on the mainland buying us another car at the moment (more seats, more comfort - the need for both became evident when we were on the mainland on holiday!) and will be away until early Monday morning - when he will get home and get ready for work! I am finishing off some gardening he started at the beginning of the week because there are some punnets that need planting so the house clean up will likely keep me out of trouble while the kids are in bed tonight. I also neglected laundry for a day or two last week, but at least it will all dry outside on the line at the moment! Spring Rocks!
The Garden:
The raised vegetable bed has carrots, radishes, beetroot, beans and parsnip planted from seed in it. We have also dug holes in the ground around the raised bed to plant tomatoes, capsicum, chilli, pumpkin, cucumber, zucchini and some other stuff too. Some iris has surprised us with BEAUTIFUL mass displays as well as some exquisite bearded iris. Iris are my favourite flowers so I am thrilled, amazing what pops up in a neglected garden! We have pinks, carnations, granny's bonnets, johnny-jump-ups, peony and half a dozen other bits and pieces popping up. Out the front has largely been neglected over winter but over the last couple of weeks I have dug out an area about 2x3meters which was waist high weeds and a few stumps (Beloved got in there with a bit of pick action with some of it with me). As I sit here I am covered in smudges of dirt and I was only driven inside by the fact that the children and I need to rest or one of us will pass out - no bets on who! I am racking my brains to come up with something quick and easy to feed everyone for tea so I don't have to come in until 5pm but most of it I have already fed them in the last week so we will see what happens. Sausages in bread with sauce is a balanced meal - right? If you have one in each hand that is!
Jess
opted out of going to after school activities this week. She has been enjoying an after school program at the school across the road for a while now. They play games and do exercises and it gives her a chance to catch up with friends in the community. We started sending her partially because she wasn't seeing any of her little friends now that they all started school (apparently going to school tuckers five year olds out and they don't have energy for a social life - this is me staying off my soap box about homeschooling and "socialisation") and also I like the idea of her having structured, supervised activities with other kids as she gets older - although I haddn't planned to start her on any this year. She was also feeling quite deprived watching everyone go to school WITHOUT HER (the local school is accross the road) and while I stand by our decision to homeschool 100% I did NOT want her to feel that she was completely isolated from kids her own age. So off she has been toddling every week for the last couple of months, with breaks for school holidays and family holidays. When she's been asked if she goes to school yet, she answers "Yes, I go once a week to Active After School!" and has shown every indication that she has been thriving on it. This week however Erin has opted to stay home instead. Why? She is worried that we will do something fun at home without her!!! She cracks me up. It seems we are just as fun as school, if not a little more so!
Billy:
has been having a series of lapses in judgement for the last, oh, fortnight! Really silly decisions like deciding to tear up the flyscreen in his room to throw out toys (toys were confiscated amid other consequences, including his beloved Red Bear for 24 hours). This is just an example among SEVERAL bad decisions the poor lad has made lately. On Sunday he went with his Dad for the day to drive in and get mushroom compost for the garden and spent the day working with him. I won't say that solved the issue, but it has made a difference. Where Christopher will stomp and yell aggressively, Billy will burst into tears and sook to get his own way, the challenge is to recognise it for what it is and react accordingly. He has spent a fair bit of time climbing a shrub in the backyard and I am sure he is part gibbon the way he can swing around in that thing! He is a marvel to watch.
Christopher:
really IS old enough to start toilet training and move into a big boy bed. I keep making excuses to put it off, but it is getting silly. As soon as the back door is usable again for fast access from the back yard we are starting with the toilet training (I HATE toilet training, any good tips are most welcome). As for the bed, we are just waiting for a guard and ladder on the top bunk then he can move out, Anna can get the cot and the portacot can be folded away!
Anna:
The crawling, five toothed wonder kept me up most of last night and I have NO IDEA why. My usually happy baby who sleeps through the night was neither last night. No fever, no possability that she has swallowed anything she shouldn't have (as far as I know!). My only guess is another tooth to even things up to six! Yesterday she was raced up and down the footpath in her pram by Billy as I painstakingly dug out our front weed patch - oops, GARDEN - and she loved it. Another one with a need for speed I think!
Our house:
was doing so well until last night when I decided to leave the dishes a bit late, then went to bed instead! Beloved is on the mainland buying us another car at the moment (more seats, more comfort - the need for both became evident when we were on the mainland on holiday!) and will be away until early Monday morning - when he will get home and get ready for work! I am finishing off some gardening he started at the beginning of the week because there are some punnets that need planting so the house clean up will likely keep me out of trouble while the kids are in bed tonight. I also neglected laundry for a day or two last week, but at least it will all dry outside on the line at the moment! Spring Rocks!
The Garden:
The raised vegetable bed has carrots, radishes, beetroot, beans and parsnip planted from seed in it. We have also dug holes in the ground around the raised bed to plant tomatoes, capsicum, chilli, pumpkin, cucumber, zucchini and some other stuff too. Some iris has surprised us with BEAUTIFUL mass displays as well as some exquisite bearded iris. Iris are my favourite flowers so I am thrilled, amazing what pops up in a neglected garden! We have pinks, carnations, granny's bonnets, johnny-jump-ups, peony and half a dozen other bits and pieces popping up. Out the front has largely been neglected over winter but over the last couple of weeks I have dug out an area about 2x3meters which was waist high weeds and a few stumps (Beloved got in there with a bit of pick action with some of it with me). As I sit here I am covered in smudges of dirt and I was only driven inside by the fact that the children and I need to rest or one of us will pass out - no bets on who! I am racking my brains to come up with something quick and easy to feed everyone for tea so I don't have to come in until 5pm but most of it I have already fed them in the last week so we will see what happens. Sausages in bread with sauce is a balanced meal - right? If you have one in each hand that is!
Jess
Wednesday, October 28, 2009
Monday, October 26, 2009
Where have I gone?
There is sunshine. The first two weeks of sunshine I have seen in, oh, three months at least! Until I get a lap top to take out there with me, I will be a bit scarce on here I'm afraid!
Wednesday, October 21, 2009
update
we are home and have hit the ground running.
Erin:
has been adjusting to not having the constant social stimulation that she did while we were away. Learning to treat brothers as well as she treated the friends we visited has been - challenging! But she is rising to the challenge beautifully. We got her newest set of readers today which is very exctiting.
Billy:
has grown another foot taller I'm sure in the time we've been away. He is still recovering from the trip and the last two nights in a row he has fallen asleep on a bed before tea (granted, tea was a little late!). Climbing the trees in the backyard is the new daily challenge and he does get very high, only occassionally getting stuck or falling out!
Christopher:
is pretty much ready for a big boy bed but I am putting off the transition until we get the boy's room finished because if I moved him now I would have to stop using the top bunk for storing all the kid's clothes. Christopher's language is just taking off with whole sentences now. He has just started saying "no THANKYOU" instead of just "no" which is much better!
Anna:
is crawling and has 3.3 teeth! She is still my tiny dot but is a true pocket rocket not stopping for much. We found during our holiday she isn't that much of a people person preferring to smile from a distance rather than be passed around. I can't say I blame her myself! I've also decided that we need a little valve so that we have the option of lactating through our fingertips during long car rides. Bubba getting hungry and grumpy 20 minutes from the end of a 5 hour car ride on the toll way isn't that fun for anyone!
The house:
looks pretty good. I've decided that going away for a fortnight means that nobody messes up the house so it is a good move for housekeeping! I have also come back with a refreshed outlook and sense of perspective. I have decided that beating myself up for not doing EVERYTHING means that I am too bruised to do anything the next day! I read an entry on one of my all time favourite blogs (Se7en, pop over and take a look! It's worth it) while I was away. While she was specifically talking about life with a newborn, I found that much of it applied to me - particularly KEEPING ON TRACK. I have come home with a renewed focus on doing three things WELL rather than trying to do thirty things and failing at all of them. Something I used to know but forgot! Fine weather to dry the washing doesn't hurt either!
The Garden:
is in full spring mode with massive digging, cutting, mulching, chopping, preparing of beds. I am LOVING 5 days of NO RAIN. I think this is the longest we have gone without rain for months.
Jess
Erin:
has been adjusting to not having the constant social stimulation that she did while we were away. Learning to treat brothers as well as she treated the friends we visited has been - challenging! But she is rising to the challenge beautifully. We got her newest set of readers today which is very exctiting.
Billy:
has grown another foot taller I'm sure in the time we've been away. He is still recovering from the trip and the last two nights in a row he has fallen asleep on a bed before tea (granted, tea was a little late!). Climbing the trees in the backyard is the new daily challenge and he does get very high, only occassionally getting stuck or falling out!
Christopher:
is pretty much ready for a big boy bed but I am putting off the transition until we get the boy's room finished because if I moved him now I would have to stop using the top bunk for storing all the kid's clothes. Christopher's language is just taking off with whole sentences now. He has just started saying "no THANKYOU" instead of just "no" which is much better!
Anna:
is crawling and has 3.3 teeth! She is still my tiny dot but is a true pocket rocket not stopping for much. We found during our holiday she isn't that much of a people person preferring to smile from a distance rather than be passed around. I can't say I blame her myself! I've also decided that we need a little valve so that we have the option of lactating through our fingertips during long car rides. Bubba getting hungry and grumpy 20 minutes from the end of a 5 hour car ride on the toll way isn't that fun for anyone!
The house:
looks pretty good. I've decided that going away for a fortnight means that nobody messes up the house so it is a good move for housekeeping! I have also come back with a refreshed outlook and sense of perspective. I have decided that beating myself up for not doing EVERYTHING means that I am too bruised to do anything the next day! I read an entry on one of my all time favourite blogs (Se7en, pop over and take a look! It's worth it) while I was away. While she was specifically talking about life with a newborn, I found that much of it applied to me - particularly KEEPING ON TRACK. I have come home with a renewed focus on doing three things WELL rather than trying to do thirty things and failing at all of them. Something I used to know but forgot! Fine weather to dry the washing doesn't hurt either!
The Garden:
is in full spring mode with massive digging, cutting, mulching, chopping, preparing of beds. I am LOVING 5 days of NO RAIN. I think this is the longest we have gone without rain for months.
Jess
Sunday, October 11, 2009
still hollidaying
Our dear friends who I count as my honorary brother got married yesterday and Beloved looked VERY handsome and best manly as he stood up there beside Andrew. Beloved also gave a wonderful speech. In spite of my intense dislike of all things "foofy" and the fact that making small talk generally causes me intense discomfort and irritation (weddings are not my thing!) I LOVED seeing my honorary brother get hitched to a perfectly wonderful girl.
Andrew has been my friend for more years than either of us actually admit and he is one of my all time favourite people. Second only to my hubby and kids and to be mentioned in the same breath as them makes him pretty special. He is also a dairy farmer and has promised Billy an apprenticeship when Billy turns 15!
I had the opportunity to read a poem at the reception:
You're married, you're hitched! Hip hip horray!
It's about time is all that I'll say.
Take her home, change the ear-tag, get 'er in calf
bring her home to Tassie and we'll all have a laugh.
In my defense, I did make that up in about two minutes!
We are all rather exhausted today after the hectic lead up to the wedding etc. so we are putting our feet up for a bit. We head home at the end of the week!
Andrew has been my friend for more years than either of us actually admit and he is one of my all time favourite people. Second only to my hubby and kids and to be mentioned in the same breath as them makes him pretty special. He is also a dairy farmer and has promised Billy an apprenticeship when Billy turns 15!
I had the opportunity to read a poem at the reception:
You're married, you're hitched! Hip hip horray!
It's about time is all that I'll say.
Take her home, change the ear-tag, get 'er in calf
bring her home to Tassie and we'll all have a laugh.
In my defense, I did make that up in about two minutes!
We are all rather exhausted today after the hectic lead up to the wedding etc. so we are putting our feet up for a bit. We head home at the end of the week!
Monday, October 05, 2009
Guess what we did last night?
we went on a great big BOAT!
Yes, we are officially on holidays. After adventures like eating dinner and sleeping all night on the Spirit of Tasmania 1 we arrived in Melbourne bright and early this morning. We saw FIVE hot air balloons floating over the city and it was all quite peaceful - until everyone else woke up and the two carsick prone kids suffered the inevitable side effect of stop-start city driving! Overall, it has been wonderful so far with the kids behaving beautifully on the boat, even with all of us squished into a four berth cabin (Billy and Erin top-n-tailed and Anna went in the tiny port-a-cot they provide). We are staying with friends today and I am taking advantage of their computer and kitchen (they have a PANTRY, a GAS STOVE and CUPBOARD DOORS!!).
Tomorrow we are off to the ZOO!!
Yes, we are officially on holidays. After adventures like eating dinner and sleeping all night on the Spirit of Tasmania 1 we arrived in Melbourne bright and early this morning. We saw FIVE hot air balloons floating over the city and it was all quite peaceful - until everyone else woke up and the two carsick prone kids suffered the inevitable side effect of stop-start city driving! Overall, it has been wonderful so far with the kids behaving beautifully on the boat, even with all of us squished into a four berth cabin (Billy and Erin top-n-tailed and Anna went in the tiny port-a-cot they provide). We are staying with friends today and I am taking advantage of their computer and kitchen (they have a PANTRY, a GAS STOVE and CUPBOARD DOORS!!).
Tomorrow we are off to the ZOO!!
Tuesday, September 29, 2009
An Update In Pictures - the last six months
Guess who found the card reader? That would be me!
So our last six months of photos are in the process of being sorted, here's a sample....
Erin:
has been training medical students who, quite frankly, are like trained monkeys!
She's also been bonding with her sister
Caging wild animals (yes, that is Billy in there, APPARENTLY he was in on the game)
and having a birthday
Most recently, she's been in training for the next mad scientist
Billy:
has been creating wonderful nature collections of....dirt.
having a birthday of his own
and making alien eyes
Most recently, he's been wondering if having a sister with medical aspirations is all it cracked up to be...
Christopher:
Has been a bit exhausted
considering taking to the high seas, arrrgh
discovering the joys of playing out on a lawn
learning to mop the front hallway
Anna:
has been smiling
being subjected to bunny ears
and funny hats
and being completely adorable - even with flushed, teething cheeks
So our last six months of photos are in the process of being sorted, here's a sample....
Erin:
has been training medical students who, quite frankly, are like trained monkeys!
She's also been bonding with her sister
Caging wild animals (yes, that is Billy in there, APPARENTLY he was in on the game)
and having a birthday
Most recently, she's been in training for the next mad scientist
Billy:
has been creating wonderful nature collections of....dirt.
having a birthday of his own
and making alien eyes
Most recently, he's been wondering if having a sister with medical aspirations is all it cracked up to be...
Christopher:
Has been a bit exhausted
considering taking to the high seas, arrrgh
discovering the joys of playing out on a lawn
learning to mop the front hallway
Anna:
has been smiling
being subjected to bunny ears
and funny hats
and being completely adorable - even with flushed, teething cheeks
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