This song has carried Jon and I through the last couple of months.
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The whole album (which is AMAZING) can be downloaded here for free. I highly recommend it.
Monday, October 31, 2011
Sunday, October 30, 2011
Tutorial: Baby Origami
Things are...let's not use the 'Q' word...LESS NOISY here at the moment so I thought I would take a moment to introduce you to my new favourite pastime - baby origami!
No, that is not folding babies. It is folding things around babies. Silly.
This is a wrapping style that I learned during our first PICU stay. The reason it is so fantastic is it can wrap a baby for comfort and security but still allow easy access (and if necessary a visual line) to their chest.
DISCLAIMER - this wrap is not suitable for every special needs baby in every situation. Use common sense and a nurse - your nurse generally has more of a clue than some chick on the internet. But as a parent in a hospital situation I know how valuable it can be to take an active part in the day to day care of your baby and I have WOWED a few nurses with this wrap...on that note....
We will start with our subject - the beautiful Kaylee
Just for a little bit of perspective, see those green straps next to her shoulders? They go around most babies' waists. I will be using a flannel the same dimensions as a cloth nappy (OK, it IS a cloth nappy) for this demonstration but if your baby isn't fun size you may have to get something a little bigger.
Place the baby slightly to one side of the middle of the wrap. If you are planning to lay the baby on their side, make the short side the same side you will be laying them on. Make sure all leads and tubes are going downward toward bub's feet without any kinks or nasty tangles. Alternatively, you could have the leads and wires etc going upward over your baby's shoulder, it all depends on what and where they are placed. If in doubt, ask a nurse.
Take the corner of the short side and fold it down over the baby's arm like SO.
Then take the straight edge of the short side and fold it across the baby. You may have to hold that first fold down while you do this, it depends if your baby is flailing around yelling blue murder or peacefully sleeping. Be careful to leave the chest exposed.
Tuck the edge you just folded across your baby firmly under your baby's side like SO.
Now take the corner of your long side and fold it down over your baby's other arm like SO.
Then fold the long side across your baby and tuck it firmly under their side like SO.
Again being careful to leave the chest exposed.
Now the baby's arms will be held firmly next to their body which helps calm some babies and prevents their Moro reflex from waking them once they're asleep.
The lower part of the wrap will be like a long tube. Gently flair the bottom of the tube so it looks a little like a mermaid's tail. Singing "Under The Sea" from The Little Mermaid at this point is entirely optional but highly recommended.
Now fold the mermaid's tail up toward the baby's head. If the tail completely covers the chest area you may choose to fold it back on itself to expose the chest. Be careful of leads and tubes (yes, because that is something I need to remind you of I am sure.)
Tuck the corners of the mermaid's tail in and you now have a well wrapped baby.
The best thing about this method is nurses can check respirations, chest wound sites, monitor dot placement etc without unwrapping the baby. Also, it can be used when the baby is under a warmer because the chest and temperature probe can be left exposed.
Now go and amaze your friends at dinner parties! Well, it will work if they are paediatric nurses...
And hence we draw to the conclusion of possibly the wordiest tutorial on how to wrap a baby ever written complete with dodgy, poorly lit pictures (hey, I do words, not pictures!). You're welcome!
No, that is not folding babies. It is folding things around babies. Silly.
This is a wrapping style that I learned during our first PICU stay. The reason it is so fantastic is it can wrap a baby for comfort and security but still allow easy access (and if necessary a visual line) to their chest.
DISCLAIMER - this wrap is not suitable for every special needs baby in every situation. Use common sense and a nurse - your nurse generally has more of a clue than some chick on the internet. But as a parent in a hospital situation I know how valuable it can be to take an active part in the day to day care of your baby and I have WOWED a few nurses with this wrap...on that note....
We will start with our subject - the beautiful Kaylee
Just for a little bit of perspective, see those green straps next to her shoulders? They go around most babies' waists. I will be using a flannel the same dimensions as a cloth nappy (OK, it IS a cloth nappy) for this demonstration but if your baby isn't fun size you may have to get something a little bigger.
Place the baby slightly to one side of the middle of the wrap. If you are planning to lay the baby on their side, make the short side the same side you will be laying them on. Make sure all leads and tubes are going downward toward bub's feet without any kinks or nasty tangles. Alternatively, you could have the leads and wires etc going upward over your baby's shoulder, it all depends on what and where they are placed. If in doubt, ask a nurse.
Take the corner of the short side and fold it down over the baby's arm like SO.
Then take the straight edge of the short side and fold it across the baby. You may have to hold that first fold down while you do this, it depends if your baby is flailing around yelling blue murder or peacefully sleeping. Be careful to leave the chest exposed.
Tuck the edge you just folded across your baby firmly under your baby's side like SO.
Now take the corner of your long side and fold it down over your baby's other arm like SO.
Then fold the long side across your baby and tuck it firmly under their side like SO.
Again being careful to leave the chest exposed.
Now the baby's arms will be held firmly next to their body which helps calm some babies and prevents their Moro reflex from waking them once they're asleep.
The lower part of the wrap will be like a long tube. Gently flair the bottom of the tube so it looks a little like a mermaid's tail. Singing "Under The Sea" from The Little Mermaid at this point is entirely optional but highly recommended.
Now fold the mermaid's tail up toward the baby's head. If the tail completely covers the chest area you may choose to fold it back on itself to expose the chest. Be careful of leads and tubes (yes, because that is something I need to remind you of I am sure.)
Tuck the corners of the mermaid's tail in and you now have a well wrapped baby.
The best thing about this method is nurses can check respirations, chest wound sites, monitor dot placement etc without unwrapping the baby. Also, it can be used when the baby is under a warmer because the chest and temperature probe can be left exposed.
Now go and amaze your friends at dinner parties! Well, it will work if they are paediatric nurses...
And hence we draw to the conclusion of possibly the wordiest tutorial on how to wrap a baby ever written complete with dodgy, poorly lit pictures (hey, I do words, not pictures!). You're welcome!
Saturday, October 29, 2011
20 signs I've been here too long!
You know your child has been in hospital too long when...
1)....you can tell ten things about a new nurse instantly from the colour of his/her scrubs and style of his/her shoes.
2)....your hands don't feel 'clean' until there is hand sanitiser involved.
3)....you have stopped licking your fingers when cooking/eating because hand sanitiser tastes gross.
4)....you know that a good nurse will stop a mediocre doctor from killing a patient but if a mediocre nurse came on shift you'd be afraid to go and pee for 8 hours.
5)....you know which alarms to worry about and which ones you can switch off and tell the nurse about later and which ones you switch off and ignore.
6)....you know what each "code" means when it is called over the PA system.
7)....the nurses tell the patients of new admissions to ask you if they can't find a nurse and they want to know something.
8)....your family and friends need a dictionary of medical terms to understand you.
9)....you firmly believe your morning mocha should qualify for a medicare rebate
10)....you wonder if the seemingly permanent twitch in one one of the bags under your eyes will burn off the calories from your medicinal mocha.
11)....you know which floor of the hospital contains which speciality off by heart.
12)....you can find your way around the hospital. At all.
13)....you threaten to beat anyone who uses the "Q" word (quiet).
14)....you know which hospital 'rules' you need to obey, which ones you can bend and which ones you can totally ignore.
15)....you have at least three good friends who have children with life threatening conditions.
16)....four or more of your child's doctors know you well enough to tell you that you look awful.
17)....you not only know the names of most of your nurses, you also know their hobbies, favourite books and movies and children's names.
18)....you have ever helped the cleaner as a form of stress relief.
19)....the nurse comes in to see that you have taken full obs and written notes.
20)....you consider 3 tubes and 5 wires attached to your child to be completely manageable, in fact, almost normal!
Here's to going home soon.
And here's a bonus 5
21)....you know which days to avoid the cafeteria
22)....you know what times to avoid trying to get a coffee (the cue between 8-9 weekdays is INSANELY long)
23)....you are on a first name basis with staff from at least five different departments
24)....you consider it a good thing if appointments etc. are running late because you know it means your child isn't the most urgent case.
25)....you have unintentionally memorised the roster of the cleaners, ward clerks and kitchen personnel.
1)....you can tell ten things about a new nurse instantly from the colour of his/her scrubs and style of his/her shoes.
2)....your hands don't feel 'clean' until there is hand sanitiser involved.
3)....you have stopped licking your fingers when cooking/eating because hand sanitiser tastes gross.
4)....you know that a good nurse will stop a mediocre doctor from killing a patient but if a mediocre nurse came on shift you'd be afraid to go and pee for 8 hours.
5)....you know which alarms to worry about and which ones you can switch off and tell the nurse about later and which ones you switch off and ignore.
6)....you know what each "code" means when it is called over the PA system.
7)....the nurses tell the patients of new admissions to ask you if they can't find a nurse and they want to know something.
8)....your family and friends need a dictionary of medical terms to understand you.
9)....you firmly believe your morning mocha should qualify for a medicare rebate
10)....you wonder if the seemingly permanent twitch in one one of the bags under your eyes will burn off the calories from your medicinal mocha.
11)....you know which floor of the hospital contains which speciality off by heart.
12)....you can find your way around the hospital. At all.
13)....you threaten to beat anyone who uses the "Q" word (quiet).
14)....you know which hospital 'rules' you need to obey, which ones you can bend and which ones you can totally ignore.
15)....you have at least three good friends who have children with life threatening conditions.
16)....four or more of your child's doctors know you well enough to tell you that you look awful.
17)....you not only know the names of most of your nurses, you also know their hobbies, favourite books and movies and children's names.
18)....you have ever helped the cleaner as a form of stress relief.
19)....the nurse comes in to see that you have taken full obs and written notes.
20)....you consider 3 tubes and 5 wires attached to your child to be completely manageable, in fact, almost normal!
Here's to going home soon.
And here's a bonus 5
21)....you know which days to avoid the cafeteria
22)....you know what times to avoid trying to get a coffee (the cue between 8-9 weekdays is INSANELY long)
23)....you are on a first name basis with staff from at least five different departments
24)....you consider it a good thing if appointments etc. are running late because you know it means your child isn't the most urgent case.
25)....you have unintentionally memorised the roster of the cleaners, ward clerks and kitchen personnel.
Friday, October 28, 2011
A general update
Kaylee has been having little spells of her heart slowing down. It isn't terribly dangerous at the moment, it is just something to watch and look into so we've been doing that for a few days now. It seems to be related to her reflux so next week her NG tube is being switched for an NJ tube. That means that instead of going into her stomach her food tube will be placed so it goes into her small intestine. It doesn't require any surgery or anything, just a radiographer so it can be checked properly. On a day-to-day basis it will mean that Kaylee will be on continuous feeds with a "kangaroo pump". It will be interesting having to keep her plugged in once we are home! But it is manageable and it is not an uncommon thing to have to work around.
We are heading into a long weekend and the ward is always delightfully quiet over the weekend. Kaylee and I will be moving into an isolation room tomorrow so rather than having a four bed room to ourselves we will get a one bed room to ourselves. The biggest thing this will mean for us is it guarantees our privacy and guards our quiet which will be lovely.
Kaylee's IV antibiotics finish on the 3rd of November and it will be fantastic to get rid of the central line. It is in an awkward place and I am constantly paranoid about it getting messed up when she fills her nappy or bumped when I change her or pick her up.
Yesterday I ended up leaving the hospital at 1am by the time I had finished everything I wanted to do here and expressed so I am pretty tired today. I ended up going back to Ronald McDonald House to do some laundry and having a nap for an hour or so this afternoon. I am tired and somewhat cranky and completely ready to go home! Soon...
We are heading into a long weekend and the ward is always delightfully quiet over the weekend. Kaylee and I will be moving into an isolation room tomorrow so rather than having a four bed room to ourselves we will get a one bed room to ourselves. The biggest thing this will mean for us is it guarantees our privacy and guards our quiet which will be lovely.
Kaylee's IV antibiotics finish on the 3rd of November and it will be fantastic to get rid of the central line. It is in an awkward place and I am constantly paranoid about it getting messed up when she fills her nappy or bumped when I change her or pick her up.
Yesterday I ended up leaving the hospital at 1am by the time I had finished everything I wanted to do here and expressed so I am pretty tired today. I ended up going back to Ronald McDonald House to do some laundry and having a nap for an hour or so this afternoon. I am tired and somewhat cranky and completely ready to go home! Soon...
Thursday, October 27, 2011
M & D University
I bet you didn't know I am studying full time at the moment.
I am attending M & D University - that's Moses and David University.
Both these leaders got a rigorous training before taking on their famous roles.
Both of them spent time as shepherds, in royal court (David as court musician, Moses as an adopted son of Pharoh's daughter), David was a guerilla warrior and mercenary while being pursued by Saul, Moses was the son in law of a tribal leader and priest who possessed great wisdom and insight. These experiences prepared them to take on arguably the two most influential positions of the old testament. The skills they learned during those years - about 40 for David and 80 for Moses - served them well as they led Israel and shaped history. One day I am going to write a book examining the skills Moses and David would have learned during these periods and how those skill would have served them in their more well known roles - but for now I will leave it up to your imaginations and go on with talking about me - because this is all about me, check the name of the blog.
One day my role as mother will be less intense in terms of the time and physical effort it needs. I had thought that perhaps when my kids are grown and independent I may take on another job of some type. I change my mind about what kind of job about as often as a five year old does. My top ten at the moment are: lactation consultant, foster parent(perhaps specialising in caring for kids with special needs), play therapist, hospital teacher, special needs teacher, social worker, poly-culture farmer, occupational therapist, child psychologist and writer/poet. Curiously, other than hospital teacher, all of these were jobs I was thinking about before Kaylee arrived.
Almost every day I am learning skills and collecting knowledge that would help me in any and all of these occupations. From the basic skills such as time management, creating working relationships with diverse people and assertiveness to the more specific skills and knowledge set of lactation, hospital life and dealing with special needs children - I am learning more every day than I ever did in a whole semester at university. I don't know for certain what job God has in store for me, I am just trying to pay attention to the lessons being brought to me and pass each course I take.
I think sometimes if we pay attention to the lessons of being a shepherd or a home maker or whatever is going on in our lives RIGHT NOW rather than worrying about getting a piece of paper or promotion, we will find ourselves prepared for much greater thing. Things that have an eternal impact.
That's what I think anyway.
I am attending M & D University - that's Moses and David University.
Both these leaders got a rigorous training before taking on their famous roles.
Both of them spent time as shepherds, in royal court (David as court musician, Moses as an adopted son of Pharoh's daughter), David was a guerilla warrior and mercenary while being pursued by Saul, Moses was the son in law of a tribal leader and priest who possessed great wisdom and insight. These experiences prepared them to take on arguably the two most influential positions of the old testament. The skills they learned during those years - about 40 for David and 80 for Moses - served them well as they led Israel and shaped history. One day I am going to write a book examining the skills Moses and David would have learned during these periods and how those skill would have served them in their more well known roles - but for now I will leave it up to your imaginations and go on with talking about me - because this is all about me, check the name of the blog.
One day my role as mother will be less intense in terms of the time and physical effort it needs. I had thought that perhaps when my kids are grown and independent I may take on another job of some type. I change my mind about what kind of job about as often as a five year old does. My top ten at the moment are: lactation consultant, foster parent(perhaps specialising in caring for kids with special needs), play therapist, hospital teacher, special needs teacher, social worker, poly-culture farmer, occupational therapist, child psychologist and writer/poet. Curiously, other than hospital teacher, all of these were jobs I was thinking about before Kaylee arrived.
Almost every day I am learning skills and collecting knowledge that would help me in any and all of these occupations. From the basic skills such as time management, creating working relationships with diverse people and assertiveness to the more specific skills and knowledge set of lactation, hospital life and dealing with special needs children - I am learning more every day than I ever did in a whole semester at university. I don't know for certain what job God has in store for me, I am just trying to pay attention to the lessons being brought to me and pass each course I take.
I think sometimes if we pay attention to the lessons of being a shepherd or a home maker or whatever is going on in our lives RIGHT NOW rather than worrying about getting a piece of paper or promotion, we will find ourselves prepared for much greater thing. Things that have an eternal impact.
That's what I think anyway.
A (part of a) day in the life...
6:30 - alarm goes off and I drag myself out of bed and prepare for the day.
7am - I check in with the night nurse about how the night went, meet the next shift nurse and express the ocean of milk trying to explode out of my chest
8am - Feed, change, massage and tidy up Kaylee, chat with our nurse and plan my day
9am - hang about to talk to the ward doctor, case manager nurse and any other random people I need to talk to. Listen in on rounds
10am - have breakfast and express a little more then deliver my milk downstairs (it gets delivered back to ward thickened and measured) and find that I forgot to put a sticker on one of the bottles. Take it back up to the ward with me an put it in the fridge until later. Meet up with some other heart Mums in the parent room over the once a week Heart Kids morning tea.
11am - Try Kaylee at the breast with the help of the lactation consultant. She does very well and manages to get 5ml on her own. I set the rest of her feed going through her tube.
12 n - Change the dressing on Kaylee's central line. Sticker the bottle of milk I forgot earlier and deliver it. Pick up my lunch from the basement kitchen. Settle in for some lunch with Kaylee.
1pm - eat lunch while I write e-mails to the kids next to Kaylee's bed.
2pm - Set Kaylee's feeds going and check her over. Talk to our Case Nurse and the ward doctor (our doctor one the pool on what colour the Queen would wear to open the new hospital building! Pink is our favourite colour in Cardio - we encourage the children to stay pink.). Sit and blog for a little bit before going to express again.
Plans for the rest of the day include: Expressing, meeting up with a friend who is dropping off some food for me, putting Kaylee to the breast again, walking to the post office to get some post packs to send my warm tops home (the weather has changed and I want to save luggage space), having tea, changing and feeding Kaylee and more expressing. I usually leave the hospital about 10pm and start it all again tomorrow.
I may have a little nap in the chair at some point today.
Long days, but the view makes it all worthwhile.
7am - I check in with the night nurse about how the night went, meet the next shift nurse and express the ocean of milk trying to explode out of my chest
8am - Feed, change, massage and tidy up Kaylee, chat with our nurse and plan my day
9am - hang about to talk to the ward doctor, case manager nurse and any other random people I need to talk to. Listen in on rounds
10am - have breakfast and express a little more then deliver my milk downstairs (it gets delivered back to ward thickened and measured) and find that I forgot to put a sticker on one of the bottles. Take it back up to the ward with me an put it in the fridge until later. Meet up with some other heart Mums in the parent room over the once a week Heart Kids morning tea.
11am - Try Kaylee at the breast with the help of the lactation consultant. She does very well and manages to get 5ml on her own. I set the rest of her feed going through her tube.
12 n - Change the dressing on Kaylee's central line. Sticker the bottle of milk I forgot earlier and deliver it. Pick up my lunch from the basement kitchen. Settle in for some lunch with Kaylee.
1pm - eat lunch while I write e-mails to the kids next to Kaylee's bed.
2pm - Set Kaylee's feeds going and check her over. Talk to our Case Nurse and the ward doctor (our doctor one the pool on what colour the Queen would wear to open the new hospital building! Pink is our favourite colour in Cardio - we encourage the children to stay pink.). Sit and blog for a little bit before going to express again.
Plans for the rest of the day include: Expressing, meeting up with a friend who is dropping off some food for me, putting Kaylee to the breast again, walking to the post office to get some post packs to send my warm tops home (the weather has changed and I want to save luggage space), having tea, changing and feeding Kaylee and more expressing. I usually leave the hospital about 10pm and start it all again tomorrow.
I may have a little nap in the chair at some point today.
Long days, but the view makes it all worthwhile.
Tuesday, October 25, 2011
I was standing at the lift this morning and my ward doctor told me I looked exhausted. This confirmed to me that I did, indeed, need a mocha! On the way to get one I passed the stalls that are in the foyer fundraising five days a week for the hospital and I saw it. The same stall that I bought clips from that day a few weeks ago when I found out I was going home to Tasmania. I lost the clips in Hobart a day or two later which had upset me somewhat so I was THRILLED to find them again. Small things. Here they all are clipped on to the card the ward clerk in Launceston made for me. Hopefully we will be going home soon.
Kaylee tried drinking from a bottle for the first time ever. She did beautifully for her first go, considering she had a general anaesthetic yesterday and open heart surgery a week and a half ago! Today was a day when she did everything she was meant to and nothing she shouldn't.
Our room mate left for South Australia today so we have our room to ourselves and I am sleeping here tonight, next to my girl. I am getting her feeds ready and doing all the "Mum" things - and loving every minute!
Monday, October 24, 2011
Perfect ten
Central line? I poke me tongue out at your central line.
The risks involved in any procedure give me the willies and of course the anaesthetist needs to describe them all to me just before she goes in. As she goes off I am expecting to come back to, at best, a groggy, unhappy baby - at worst another stint in PICU, or worse.
I went down to discover a bright, happy baby gazing around like nothing had even happened with a beautiful, clean and tidy femoral line in her left leg.
Sailed through with a perfect ten.
Just for something different.
Also, if the lovely person who sent me some food today is reading this, can you leave a comment and let me know who you are? In the haze of surgery I didn't quite catch who it was who left the two yummy meals for me!
Sunday, October 23, 2011
Always Knock On Wood
Today we were changing the dressing on Kaylee's central line. For those who do not know, this is a line into a major artery by which we can give Kaylee drugs. I had never been a big fan of this particular line into Kaylee's neck. Put aside the fact that a great hookin' tube was coming out of my daughter's neck, it has been oozing blood, wiggling around and carrying on from the beginning. Today the sutures that were holding it in gave way and the whole thing came out. While there was a bit of blood, there was no immediate danger to Kaylee when this happened however it has made the next bit a whole lot more complicated that it was!
Kaylee needs a central line because her course of antibiotics (which goes until November 3rd) is delivered through it. Getting a peripheral line (a line into her arm or leg) into Kaylee is hard and they stop working usually within a few days and we can't constantly be putting new ones in because that will cause scar tissue to build up and make it even harder to get a line in - seeing as she will need at least two more surgeries before her first birthday we need to preserve all the line access we can get!
So we are giving Kaylee's meds a different way until tomorrow when a cardiac theatre will be available to put in her line under a general anaesthetic - making the third general she has had so far. It isn't hugely dangerous but is also not without it's risks. The fact that she will have oral antibiotics overnight (and NASTY ones at that) also bugs me as it will muck up her gut flora.
So what have we learned boys and girls? We have learned never to say "Tomorrow we will try suck feeds.". It seems to always end in tears! Every time we have said it so far, something has happened to stop it!
Kaylee needs a central line because her course of antibiotics (which goes until November 3rd) is delivered through it. Getting a peripheral line (a line into her arm or leg) into Kaylee is hard and they stop working usually within a few days and we can't constantly be putting new ones in because that will cause scar tissue to build up and make it even harder to get a line in - seeing as she will need at least two more surgeries before her first birthday we need to preserve all the line access we can get!
So we are giving Kaylee's meds a different way until tomorrow when a cardiac theatre will be available to put in her line under a general anaesthetic - making the third general she has had so far. It isn't hugely dangerous but is also not without it's risks. The fact that she will have oral antibiotics overnight (and NASTY ones at that) also bugs me as it will muck up her gut flora.
So what have we learned boys and girls? We have learned never to say "Tomorrow we will try suck feeds.". It seems to always end in tears! Every time we have said it so far, something has happened to stop it!
My Miss Crazy Hair
I gave Kaylee's hair a good scrub yesterday thinking I may tame it.
It seems there is no taming that mop!
It seems there is no taming that mop!
Saturday, October 22, 2011
PICU lag
The best time to be transferred into a ward or new hospital is a Friday. It gives you the weekend to relax and find your groove before all the five-day-a-week-specialists start lining up for attention.
Coming out of PICU creates PICU lag. PICU has a different time zone to the rest of the world. It is 24 hours a day full-on. Calling out "HALT!" to innocent, fluffy bummed, rustles in the bushes can be exhausting. And the number of times I did the happy dance on the way up has me plumb wore out! I have spent the day sleeping in the chair next to Kaylee's bed in between washing her hair, changing her nappy and playing with her. I am heartsick for my other kids, husband and home. It's been 49 days since I flew into Melbourne for the first time and 49 days since I've been home. But we are on the home stretch now and coming up to 7 West has given me the same boost that passing a mile-marker in a marathon gives a runner.
Now if you'll excuse me, I have a baby to cuddle!
Coming out of PICU creates PICU lag. PICU has a different time zone to the rest of the world. It is 24 hours a day full-on. Calling out "HALT!" to innocent, fluffy bummed, rustles in the bushes can be exhausting. And the number of times I did the happy dance on the way up has me plumb wore out! I have spent the day sleeping in the chair next to Kaylee's bed in between washing her hair, changing her nappy and playing with her. I am heartsick for my other kids, husband and home. It's been 49 days since I flew into Melbourne for the first time and 49 days since I've been home. But we are on the home stretch now and coming up to 7 West has given me the same boost that passing a mile-marker in a marathon gives a runner.
Now if you'll excuse me, I have a baby to cuddle!
Friday, October 21, 2011
Yay for comfy chairs!
We are out of PICU and on the cardio ward again. We are doing so well we didn't even get a room near the nurses station. As I type Kaylee is propped on my lap with a pillow watching me avidly. Yes, WATCHING me. Both eyes open. Kaylee did not open her eyes for days after her surgery.
The other day a card arrived that the sender forgot to sign or put a return address on. It contained some cash. Coincidentally, the night before I had thought to myself that I needed to get some cash and considered buying Kaylee a toy to look at in order to get her to open her eyes and interact a bit more. You gotta love those coincidences! So this morning I bought Mr Flutterby the Butterfly. When I brought him in to show Kaylee she had her eyes opened just slightly then I held Mr Flutterby up showing the black and white patterns on the back of his wings. Instantly she opened her eyes WIDE an spent the next 20 minutes staring at him. I get the feeling Mr Flutterby is a hit. She has now spent more time today with her eyes open and interacting than she ever has before. I love Mr Flutterby.
Health wise Kaylee is doing great. She does have an antibiotic resistant infection (one of those nasty bugs that are all around hospitals) but it was caught before she showed any symptoms and it is being treated by some "big gun" antibiotics. This should mean that it gets knocked on the head before she does show any symptoms. Unfortunately it also means we are stuck with the central line for a little while longer as she will probably need to be on antibiotics for three weeks - again! Her heart is doing well though and because we have been proactive with medication and treatment her reflux isn't bothering her either. She has a little bit of redness under her chin where her spit pooled while she was on CPAP but we are treating that with pawpaw ointment.
It's been a good day!
Thursday, October 20, 2011
There are those who see the glass as half empty.
There are those who see the glass as half full.
There are those who see the glass as full - half full of air, half full of water.
And there are those of us who recognise the validity of all the above answers, but wonder what the point of the question is.
I mean seriously, are we wanting to DRINK the water? Why are we all worried about the water? Or is it the glass we are wondering about? What are we planning to do with it? How is it relevant to my needs right now? Am I dehydrated? We have a glass and approximately 125mls of water - where do we go from here? Will this glass of water help me do my job better?
Right now I have the most beautiful tiny baby girl in the world and a handful of diagnosis. There are those who say it is a horrible thing to have spent 7 weeks in various hospitals, watching Kaylee go through painful and distressing medical procedures and having our family separated, and I agree with them whole heartedly. There are those who say it's a great thing that the beautiful Kaylee is a part of our lives and it's totally worth all the pain and distress, and I would agree with them whole heartedly. But the question I sit with is - where do we go from here?
Hopefully from HERE (PICU) we will be going upstairs to 7 West today or tomorrow - yay!
Right now Kaylee is breathing totally without support and has been doing so since yesterday. Once we took the breathing stuff off she started opening her eyes again (since the surgery she'd only opened her eyes a crack occasionally - and who could blame her?). Today hopefully her central line (the big scary drip in her neck) is being taken out and a new peripheral line is being put in (a drip will be put in her arm or leg). The dressing has been left off her zipper (incision site) and later today I am going to put some clothes on her again.
Now we can start to work out how best to start preparing for home. HOME!
Still a while away but a tangible goal now.
So now I am going to gaze in my baby's eyes, strategise and plan, and fill up the glass to take a big drink of water.
There are those who see the glass as half full.
There are those who see the glass as full - half full of air, half full of water.
And there are those of us who recognise the validity of all the above answers, but wonder what the point of the question is.
I mean seriously, are we wanting to DRINK the water? Why are we all worried about the water? Or is it the glass we are wondering about? What are we planning to do with it? How is it relevant to my needs right now? Am I dehydrated? We have a glass and approximately 125mls of water - where do we go from here? Will this glass of water help me do my job better?
Right now I have the most beautiful tiny baby girl in the world and a handful of diagnosis. There are those who say it is a horrible thing to have spent 7 weeks in various hospitals, watching Kaylee go through painful and distressing medical procedures and having our family separated, and I agree with them whole heartedly. There are those who say it's a great thing that the beautiful Kaylee is a part of our lives and it's totally worth all the pain and distress, and I would agree with them whole heartedly. But the question I sit with is - where do we go from here?
Hopefully from HERE (PICU) we will be going upstairs to 7 West today or tomorrow - yay!
Right now Kaylee is breathing totally without support and has been doing so since yesterday. Once we took the breathing stuff off she started opening her eyes again (since the surgery she'd only opened her eyes a crack occasionally - and who could blame her?). Today hopefully her central line (the big scary drip in her neck) is being taken out and a new peripheral line is being put in (a drip will be put in her arm or leg). The dressing has been left off her zipper (incision site) and later today I am going to put some clothes on her again.
Now we can start to work out how best to start preparing for home. HOME!
Still a while away but a tangible goal now.
So now I am going to gaze in my baby's eyes, strategise and plan, and fill up the glass to take a big drink of water.
Wednesday, October 19, 2011
A paddle down a stream of conciousness
I spend a lot of time watching Kaylee sleep.
I am typing while I sit with feet on the edge of her bed base so I can look up into her face and she is sleeping right now, eyes moving under their lids as she dreams. I wonder what she dreams about. Her little life has been a full one so far. I wonder if she sometimes dreams the sounds she used to hear through my belly wall. Anna stroking my belly and telling me her baby was in there. Read alouds around the table. Evening worship and story time. Occasional shouts of "Stop! No! Put that down!" *CRASH* "Oh FAR OUT!". OK, not so occasional. When Kaylee is cranky sometimes I think I should start yelling instructions and directions at the nurses to make her feel like she is in the womb again.
As we start to approach the end of our PICU time (1 week ago exactly my girl was stoned out of her mind and we were preparing her for surgery) my mind is turning to thoughts of when we go home. I asked a veteran cardio Mum if I'm ever likely to relax about Kaylee's health and well being. She told me probably not. Our life will now include hand sanitiser at all the entrances to the house, asking friends and family who pop by if they have been in contact with any illnesses in the last 72 hours and avoiding indoor public gatherings at least until Kaylee's first birthday when the surgeries are finished and she has recovered. This suits me fine. Frankly I think people who go visiting or to public places with gastro should be strung up publicly but nursing a house full of vomiting toddlers will do that to you. Our lives will now include fun trips to Hobart to the Botanical Gardens for sight seeing and the Royal Hobart Hospital for cardio, genetics and palate check ups. Our lives will now include family trips to Launceston which include stops at the paediatrician and early intervention programs. Our lives will work around breast pumping needs and feeding times.
But our lives will also include tiny pink outfits on the clothes line, impossibly long eye lashes and minute shell-like fingernails. We will still be listening to Jon read at the end of the day, children laying on the floor lined up like sausages as we experience adventures in Narnia and beyond and Kaylee nestles in a lap or her rocker, just one of the crowd. We will have trips out bush with a certain boy teasing a certain girl about leeches, fishing and camp fires as Kaylee snuggles into a sling. We will bake and garden and build and study and Kaylee will be taken up in the whirlwind that is our life adding her own special breeze to the mix.
And I wouldn't have it any other way.
I am typing while I sit with feet on the edge of her bed base so I can look up into her face and she is sleeping right now, eyes moving under their lids as she dreams. I wonder what she dreams about. Her little life has been a full one so far. I wonder if she sometimes dreams the sounds she used to hear through my belly wall. Anna stroking my belly and telling me her baby was in there. Read alouds around the table. Evening worship and story time. Occasional shouts of "Stop! No! Put that down!" *CRASH* "Oh FAR OUT!". OK, not so occasional. When Kaylee is cranky sometimes I think I should start yelling instructions and directions at the nurses to make her feel like she is in the womb again.
As we start to approach the end of our PICU time (1 week ago exactly my girl was stoned out of her mind and we were preparing her for surgery) my mind is turning to thoughts of when we go home. I asked a veteran cardio Mum if I'm ever likely to relax about Kaylee's health and well being. She told me probably not. Our life will now include hand sanitiser at all the entrances to the house, asking friends and family who pop by if they have been in contact with any illnesses in the last 72 hours and avoiding indoor public gatherings at least until Kaylee's first birthday when the surgeries are finished and she has recovered. This suits me fine. Frankly I think people who go visiting or to public places with gastro should be strung up publicly but nursing a house full of vomiting toddlers will do that to you. Our lives will now include fun trips to Hobart to the Botanical Gardens for sight seeing and the Royal Hobart Hospital for cardio, genetics and palate check ups. Our lives will now include family trips to Launceston which include stops at the paediatrician and early intervention programs. Our lives will work around breast pumping needs and feeding times.
But our lives will also include tiny pink outfits on the clothes line, impossibly long eye lashes and minute shell-like fingernails. We will still be listening to Jon read at the end of the day, children laying on the floor lined up like sausages as we experience adventures in Narnia and beyond and Kaylee nestles in a lap or her rocker, just one of the crowd. We will have trips out bush with a certain boy teasing a certain girl about leeches, fishing and camp fires as Kaylee snuggles into a sling. We will bake and garden and build and study and Kaylee will be taken up in the whirlwind that is our life adding her own special breeze to the mix.
And I wouldn't have it any other way.
Tuesday, October 18, 2011
47 days and counting
Today I cuddled Kaylee for the first time since her surgery. It was fantastic. As the nurse handed her to me I set my jaw and said firmly to myself (repeatedly) "DO NOT CRY". I failed at this. It's not that I have anything against crying, it's just when you cry people try and comfort you and I wanted a bit of privacy with my girl. Thankfully, PICU being what it is, people did understand and keep their distance as I discretely wiped at my face with the back of my hand and sniffled into my baby's hair. She is taller now than six weeks ago and there is a solidarity to her form that wasn't there before (IN YOUR FACE over-enthusiastic-dietician-from-Launceston, I told you she didn't need calorie sup yet - HA!). This has the effect of her feeling more real to me, less ethereal in her form and more earth-bound. Her beauty is more of-this-world than it was.
She has a fondness for over-saturating now (which means there is sometimes TOO much blood going to her lungs) and so we are now balancing out her medications, upping some and weaning others, while her body works out how to drive itself with its new modifications. It's a tight rope act, but we are getting there. I know Kaylee is getting better because she sucks her dummy with relish and gets really ticked off when someone does something she doesn't like. If she has the energy to get annoyed, it's a good thing!
I feel a bit like a sentry on guard at the moment shouting "HALT! Who goes there?" at rabbits in the forest.
There are always little signs to watch for which could mean something or nothing. For instance, yesterday she has bubbles of snot going EVERYWHERE. This could mean (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot or (b) the highly irritating family who constantly filled up the family room this week with their snotty nosed, coughing children somehow managed to get their germs on me and I transferred them to her and she has a respiratory virus and everything is going to go pear shaped.
It turns out that the answer is (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot. The treatment for this exotic symptom is the use of a tissue.
And there's the feet. Her feet were cold so I started asking the nurse about meds and periphery circulation and shunt sizes and the possibility of another open heart surgery this week etc. Do you know what her profound suggestion was? Put booties on Kaylee. We did and now her feet are warm. Over 7 years of parenting, five babies, and I forgot that booties make the feet warm and cold feet don't always mean crack the baby's chest open.
I am not worrying so much as very alert and like the sentry on duty I am very aware that the next rustle in the bushes could well be the enemy rather than a fluffy bummed distraction.
But for now I had a cuddle. The weaning of the CPAP is going well and once we are off that we can talk about going back to the ward. I like the ward. On the ward we talk about things outside the magic golden triangle of heart beat, respiration and nutrition. We start to talk about Kaylee and make plans like we think that she will be here two weeks, two months, two years from now. That kind of rocks.
Because life with Kaylee is better.
She has a fondness for over-saturating now (which means there is sometimes TOO much blood going to her lungs) and so we are now balancing out her medications, upping some and weaning others, while her body works out how to drive itself with its new modifications. It's a tight rope act, but we are getting there. I know Kaylee is getting better because she sucks her dummy with relish and gets really ticked off when someone does something she doesn't like. If she has the energy to get annoyed, it's a good thing!
I feel a bit like a sentry on guard at the moment shouting "HALT! Who goes there?" at rabbits in the forest.
There are always little signs to watch for which could mean something or nothing. For instance, yesterday she has bubbles of snot going EVERYWHERE. This could mean (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot or (b) the highly irritating family who constantly filled up the family room this week with their snotty nosed, coughing children somehow managed to get their germs on me and I transferred them to her and she has a respiratory virus and everything is going to go pear shaped.
It turns out that the answer is (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot. The treatment for this exotic symptom is the use of a tissue.
And there's the feet. Her feet were cold so I started asking the nurse about meds and periphery circulation and shunt sizes and the possibility of another open heart surgery this week etc. Do you know what her profound suggestion was? Put booties on Kaylee. We did and now her feet are warm. Over 7 years of parenting, five babies, and I forgot that booties make the feet warm and cold feet don't always mean crack the baby's chest open.
I am not worrying so much as very alert and like the sentry on duty I am very aware that the next rustle in the bushes could well be the enemy rather than a fluffy bummed distraction.
But for now I had a cuddle. The weaning of the CPAP is going well and once we are off that we can talk about going back to the ward. I like the ward. On the ward we talk about things outside the magic golden triangle of heart beat, respiration and nutrition. We start to talk about Kaylee and make plans like we think that she will be here two weeks, two months, two years from now. That kind of rocks.
Because life with Kaylee is better.
Monday, October 17, 2011
Oh the People You'll Meet
It is safe to say that I am not an extreme people person.
I can happily go a month seeing only my husband and kids and be very content and my special treat to myself at College was to go a whole week without talking to anyone except when in class or to go out to a movie completely alone.
It's not that I don't like people or that I don't care about them, it is just that I enjoy, crave and am filled up by solitude.
In the last seven weeks, solitude has been scarce and I am often feeling like I am on People Overload.
Even when I am on my own in my room I can hear the sounds of the city - that writhing mass of humanity - outside my window and hear the bumps and thumps of communal living outside my door.
This has not been my favourite aspect of this experience.
However, the people I have met are mostly amazing.
There is a fellow Tasmanian who has been here for almost three months now and will be here for a few more weeks yet at least. We have been room mates almost every day that Kaylee has been on 7 West and have spent much time talking as we express or sit at our respective baby's bed sides.
I have developed a deep respect and love for nurses and doctors in general. I wouldn't even hazard a guess how many I have dealt with in the last few weeks but I could count on one hand the ones I didn't get on with. The majority have been wonderful. Right now Kaylee's room is closed off because another child in there is undergoing a procedure. I have been shut out for five hours so far which is hugely frustrating however I know that the nurse with Kaylee understands that she gets fussy when her nappy is dirty and likes to be wrapped. She cares not only about the "medical stuff" but also about Kaylee's comfort, and that means a lot to me. The night Kaylee flew out without me the transport team showed up. It consisted of a nurse and doctor from Hobart who were laughing and joking - a total contrast to the image I had in my head of no-nonsense, all business, emergency types who were going to whip my baby away. I left the room while Kaylee was intubated and when I came back, Doctor Katherine had wiped Kaylee's eyes and was playing with her hair and "prettying" her up. She will never know what that did for me as a mother. The nurses from Launceston called through yesterday just to see how Kaylee is doing.
There are the long term cardio Mums who have been in and out of this and other hospitals for years. They are often generous with their knowledge and experience and amazingly supportive.
Many of the people I have known for years have stepped up to be incredibly supportive. The visits, phone calls, messages and million other ways they have shown they care have nurtured my heart.
Some people I hardly know or have never met in person have found ways to help make our journey easier.
So while I am still looking forward to long quiet days at home, I am blessed by the ministry of all these people.
I can happily go a month seeing only my husband and kids and be very content and my special treat to myself at College was to go a whole week without talking to anyone except when in class or to go out to a movie completely alone.
It's not that I don't like people or that I don't care about them, it is just that I enjoy, crave and am filled up by solitude.
In the last seven weeks, solitude has been scarce and I am often feeling like I am on People Overload.
Even when I am on my own in my room I can hear the sounds of the city - that writhing mass of humanity - outside my window and hear the bumps and thumps of communal living outside my door.
This has not been my favourite aspect of this experience.
However, the people I have met are mostly amazing.
There is a fellow Tasmanian who has been here for almost three months now and will be here for a few more weeks yet at least. We have been room mates almost every day that Kaylee has been on 7 West and have spent much time talking as we express or sit at our respective baby's bed sides.
I have developed a deep respect and love for nurses and doctors in general. I wouldn't even hazard a guess how many I have dealt with in the last few weeks but I could count on one hand the ones I didn't get on with. The majority have been wonderful. Right now Kaylee's room is closed off because another child in there is undergoing a procedure. I have been shut out for five hours so far which is hugely frustrating however I know that the nurse with Kaylee understands that she gets fussy when her nappy is dirty and likes to be wrapped. She cares not only about the "medical stuff" but also about Kaylee's comfort, and that means a lot to me. The night Kaylee flew out without me the transport team showed up. It consisted of a nurse and doctor from Hobart who were laughing and joking - a total contrast to the image I had in my head of no-nonsense, all business, emergency types who were going to whip my baby away. I left the room while Kaylee was intubated and when I came back, Doctor Katherine had wiped Kaylee's eyes and was playing with her hair and "prettying" her up. She will never know what that did for me as a mother. The nurses from Launceston called through yesterday just to see how Kaylee is doing.
There are the long term cardio Mums who have been in and out of this and other hospitals for years. They are often generous with their knowledge and experience and amazingly supportive.
Many of the people I have known for years have stepped up to be incredibly supportive. The visits, phone calls, messages and million other ways they have shown they care have nurtured my heart.
Some people I hardly know or have never met in person have found ways to help make our journey easier.
So while I am still looking forward to long quiet days at home, I am blessed by the ministry of all these people.
Sunday, October 16, 2011
Another day of stepping forward
Today Kaylee had all her drains and things taken out which she sailed through.
She also had her breathing tube taken out which she didn't sail through quite as easily. After a few hours of wondering if we would need to put it back in she did settle down a bit and she is now still on a bit of fancy breathing equipment (CPAP) but doing fairly well.
I had a good chat tonight with another "cardio Mum" who is down here from Queensland. Her little one is 3 now and has had three stints of having an open chest for five days at a time. There is always someone who puts your own situation into perspective. However she did point out to me that "just a shunt op", if it goes seriously wrong, has just as serious a consequence as any of her boy's ops; therefore any pain, distress and angst I am going through is just as legitimate as hers.
I picked her brain about life with a "cardio baby" and plan to catch up with her again tomorrow to do the same.
I can't wait to get out of PICU.
The stools make my back hurt and the family room is continually packed - often with a certain family who has at least two children with respiratory infections (aka colds).
I like the PICU nurses but I miss my 7 West (the Royal Children's cardio ward) nurses. I miss my Tassie nurses even more.
But Kaylee takes the scenic route most of the time and to fret for those things is to miss celebrating taking out the drains and wires successfully and removing the breathing tube. It somehow got late again (waffling up on 7 West does that) but I managed to nap in that overcrowded family room today while I waited for news on Kaylee's tube removal.
It was a full day today and I am tired. I would love to shower but it seems inconsiderate to shower at 1am here where so many people with sick kids are trying to sleep so I will put it off for morning. Right now I am going to crash knowing we are heading in the right direction right now and tomorrow I will enjoy the scenery with my girl.
She also had her breathing tube taken out which she didn't sail through quite as easily. After a few hours of wondering if we would need to put it back in she did settle down a bit and she is now still on a bit of fancy breathing equipment (CPAP) but doing fairly well.
I had a good chat tonight with another "cardio Mum" who is down here from Queensland. Her little one is 3 now and has had three stints of having an open chest for five days at a time. There is always someone who puts your own situation into perspective. However she did point out to me that "just a shunt op", if it goes seriously wrong, has just as serious a consequence as any of her boy's ops; therefore any pain, distress and angst I am going through is just as legitimate as hers.
I picked her brain about life with a "cardio baby" and plan to catch up with her again tomorrow to do the same.
I can't wait to get out of PICU.
The stools make my back hurt and the family room is continually packed - often with a certain family who has at least two children with respiratory infections (aka colds).
I like the PICU nurses but I miss my 7 West (the Royal Children's cardio ward) nurses. I miss my Tassie nurses even more.
But Kaylee takes the scenic route most of the time and to fret for those things is to miss celebrating taking out the drains and wires successfully and removing the breathing tube. It somehow got late again (waffling up on 7 West does that) but I managed to nap in that overcrowded family room today while I waited for news on Kaylee's tube removal.
It was a full day today and I am tired. I would love to shower but it seems inconsiderate to shower at 1am here where so many people with sick kids are trying to sleep so I will put it off for morning. Right now I am going to crash knowing we are heading in the right direction right now and tomorrow I will enjoy the scenery with my girl.
Saturday, October 15, 2011
Slow and Steady
We are making slow but steady progress in PICU.
She is more awake and alert than ever.
I love to see her eyes open, I hate to see her working hard to move against the tubes and wires.
I wish I could do the same trick as the fairies from Sleeping Beauty and send Kaylee back to sleep until she is all better and there is no more discomfort or pain. But I can't.
We do all we can to keep her comfortable and content and I am looking forward to our next steps forward.
She is more awake and alert than ever.
I love to see her eyes open, I hate to see her working hard to move against the tubes and wires.
I wish I could do the same trick as the fairies from Sleeping Beauty and send Kaylee back to sleep until she is all better and there is no more discomfort or pain. But I can't.
We do all we can to keep her comfortable and content and I am looking forward to our next steps forward.
Friday, October 14, 2011
A good day
Today Kaylee did everything we wanted her to and nothing we didn't want her to.
Her drugs are being keyed back so she is waking up (sort of) and doing most of her breathing on her own. Tonight I will change her nappy and kiss her and sing to her.
Hopefully we will be taking out her breathing tube sometime over the weekend.
In some ways her waking up a bit makes it harder to leave her at all.
But steps toward being back up on 7 West (the cardio ward) are good.
A good day.
Her drugs are being keyed back so she is waking up (sort of) and doing most of her breathing on her own. Tonight I will change her nappy and kiss her and sing to her.
Hopefully we will be taking out her breathing tube sometime over the weekend.
In some ways her waking up a bit makes it harder to leave her at all.
But steps toward being back up on 7 West (the cardio ward) are good.
A good day.
Thursday, October 13, 2011
Hard Questions
Often I am asked by my medical staff if I have any questions. I usually have a million - but only two or three that can actually be answered in any concrete way.
Usually the answers to all the rest are:
"There is no way of knowing for certain just yet"
"It depends on how she reacts"
"we will have to wait and see"
and
"I don't know."
And I know exactly how they feel.
When people ask questions I genuinely do want to give them answers they can understand and hold on to but answers that won't mislead them. But the questions they ask are tricky!
Questions like:
"How is she?"
Yes, that is a hard question to answer. I can tell you how she is right this minute, right this SECOND, but it may not bear any resemblance to how she will be in five minutes time. She may be doing fantastically and have been doing brilliantly for days and then twenty minutes later she is navy blue, surrounded by the Medical Emergency Team and on her way down to ICU. She can turn on a dime.
"What, exactly, is wrong with her?"
Do you want the reader's digest abridged version or the Encyclopaedia Britannica version? Kaylee has a complex diagnosis which means she has LOTS of different things which all bounce off each other. Even her heart condition is a little different as only a minority of children with Tetralogy of Fallot heart condition need a shunt and only a minority of that minority require bypass and only a minority of that minority of THAT minority have the clotting complications that occurred with Kaylee. Of those children I have no idea how many of those children have Gastroesophageal reflux disease, a cleft palate and Cornelia De Lange Syndrome! I am guessing not many. So to paint a full picture of Kaylee's health issues is not a small task. And sometimes, at the end of the day, I am a little tired already. Some of Kaylee's diagnosis I am still wrapping my head around. I am an expert when it comes to Kaylee's daily care, I use my knowledge of child development and 7 years parenting experience every day, I am pretty good at advocating for her in terms of making sure that medical staff understand that she has a complex diagnosis and take all her various issues into account, but I still a learner when it comes to describing the medical side of things. While I understand in broad terms Kaylee's diagnosis, there are still some details I am a little fuzzy on. After 6 weeks of medical procedures, 3 hospitals, 4 wards, 2 states, 4 inter-hospital transfers, untold numbers of medical professionals and being separated from the rest of my kids there are days when my understanding is reduced to "Heart broken, doctors try and fix heart. Me make milk and sing.". And I am totally OK with that. I am coming to understand how the reflux interacts with the heart condition and the syndrome issues and cleft relate to her feeding issues etc. but getting to a point where I can explain this fully to others is taking some time. And of course, Kaylee being Kaylee, it all changes on almost a daily basis. So yes, it is a hard question!
"Is she gaining weight?"
Now you would think this would be an easy question to answer! But even within this there are hidden complexities and to give a complete picture usually requires more than a yes or no. While normally a healthy baby gaining weight is an indication all is well, when it comes to Kaylee it can mean (a) she is growing and will tolerate future surgeries better than if she wasn't growing (b) she is growing but her heart condition is still deteriorating and things do not look good or (c) her kidney function has been impaired and she is retaining fluid! I am hoping in future it means (a) and ONLY (a)!!
"Will she (walk, talk, learn, eat normally etc.)?"
There is one and only one answer to this question and that is "I don't know". Unfortunately, it doesn't make the question any easier. We will do everything we can to make sure that Kaylee has as full and rich a life as possible. She may have average intelligence with only a few traces left of her early physical trauma or she may not. We simply do not know. Sometimes the hardest questions aren't hard because of their complexity, they are hard because of their content and the Pandora's Box of emotion they evoke.
These are honest an loving questions which I honestly do not mind getting! But I do need people to understand that if it takes me a while to answer, it is because answering the questions of others is taking second place to doing my job of Wife to Jon and Mum to all six of my kids. I need people to understand that if my answers seem vague and incomplete, it is not because I resent them asking or because I am deliberately leaving them out of the loop, it is sometimes because the answers ARE vague and incomplete! I need people to understand that at this moment simply heart beat, oxygen and nutrition takes up the majority of our time with Kaylee. I need people to understand that chilling with my hubby, talking on the phone to my kids and hanging with my Kaylee take precedence over everything else right now.
And for the most part, people have understood that.
And I thank you for it!
In the mean time, I will keep on asking the hard questions and trying to find good answers for them. And I will spend each day loving my girl and being thankful for the privilege of having her in my life.
Usually the answers to all the rest are:
"There is no way of knowing for certain just yet"
"It depends on how she reacts"
"we will have to wait and see"
and
"I don't know."
And I know exactly how they feel.
When people ask questions I genuinely do want to give them answers they can understand and hold on to but answers that won't mislead them. But the questions they ask are tricky!
Questions like:
"How is she?"
Yes, that is a hard question to answer. I can tell you how she is right this minute, right this SECOND, but it may not bear any resemblance to how she will be in five minutes time. She may be doing fantastically and have been doing brilliantly for days and then twenty minutes later she is navy blue, surrounded by the Medical Emergency Team and on her way down to ICU. She can turn on a dime.
"What, exactly, is wrong with her?"
Do you want the reader's digest abridged version or the Encyclopaedia Britannica version? Kaylee has a complex diagnosis which means she has LOTS of different things which all bounce off each other. Even her heart condition is a little different as only a minority of children with Tetralogy of Fallot heart condition need a shunt and only a minority of that minority require bypass and only a minority of that minority of THAT minority have the clotting complications that occurred with Kaylee. Of those children I have no idea how many of those children have Gastroesophageal reflux disease, a cleft palate and Cornelia De Lange Syndrome! I am guessing not many. So to paint a full picture of Kaylee's health issues is not a small task. And sometimes, at the end of the day, I am a little tired already. Some of Kaylee's diagnosis I am still wrapping my head around. I am an expert when it comes to Kaylee's daily care, I use my knowledge of child development and 7 years parenting experience every day, I am pretty good at advocating for her in terms of making sure that medical staff understand that she has a complex diagnosis and take all her various issues into account, but I still a learner when it comes to describing the medical side of things. While I understand in broad terms Kaylee's diagnosis, there are still some details I am a little fuzzy on. After 6 weeks of medical procedures, 3 hospitals, 4 wards, 2 states, 4 inter-hospital transfers, untold numbers of medical professionals and being separated from the rest of my kids there are days when my understanding is reduced to "Heart broken, doctors try and fix heart. Me make milk and sing.". And I am totally OK with that. I am coming to understand how the reflux interacts with the heart condition and the syndrome issues and cleft relate to her feeding issues etc. but getting to a point where I can explain this fully to others is taking some time. And of course, Kaylee being Kaylee, it all changes on almost a daily basis. So yes, it is a hard question!
"Is she gaining weight?"
Now you would think this would be an easy question to answer! But even within this there are hidden complexities and to give a complete picture usually requires more than a yes or no. While normally a healthy baby gaining weight is an indication all is well, when it comes to Kaylee it can mean (a) she is growing and will tolerate future surgeries better than if she wasn't growing (b) she is growing but her heart condition is still deteriorating and things do not look good or (c) her kidney function has been impaired and she is retaining fluid! I am hoping in future it means (a) and ONLY (a)!!
"Will she (walk, talk, learn, eat normally etc.)?"
There is one and only one answer to this question and that is "I don't know". Unfortunately, it doesn't make the question any easier. We will do everything we can to make sure that Kaylee has as full and rich a life as possible. She may have average intelligence with only a few traces left of her early physical trauma or she may not. We simply do not know. Sometimes the hardest questions aren't hard because of their complexity, they are hard because of their content and the Pandora's Box of emotion they evoke.
These are honest an loving questions which I honestly do not mind getting! But I do need people to understand that if it takes me a while to answer, it is because answering the questions of others is taking second place to doing my job of Wife to Jon and Mum to all six of my kids. I need people to understand that if my answers seem vague and incomplete, it is not because I resent them asking or because I am deliberately leaving them out of the loop, it is sometimes because the answers ARE vague and incomplete! I need people to understand that at this moment simply heart beat, oxygen and nutrition takes up the majority of our time with Kaylee. I need people to understand that chilling with my hubby, talking on the phone to my kids and hanging with my Kaylee take precedence over everything else right now.
And for the most part, people have understood that.
And I thank you for it!
In the mean time, I will keep on asking the hard questions and trying to find good answers for them. And I will spend each day loving my girl and being thankful for the privilege of having her in my life.
The shunt is working
It's been a long night. And morning.
When I saw Kaylee last night she had an open incision in her chest and there were question marks over the success of the shunt placement. She had bled lots and had been given transfusions and clotting agents and we were worried about clots forming in the shunt.
Today at 12:30pm - more than 24 hours after she had turned navy blue - the doctor rang to tell me that her shunt is working and they have closed the incision.
Still a rocky road ahead but good news is good.
When I saw Kaylee last night she had an open incision in her chest and there were question marks over the success of the shunt placement. She had bled lots and had been given transfusions and clotting agents and we were worried about clots forming in the shunt.
Today at 12:30pm - more than 24 hours after she had turned navy blue - the doctor rang to tell me that her shunt is working and they have closed the incision.
Still a rocky road ahead but good news is good.
Wednesday, October 12, 2011
Just a quick update
Just a quick update before I collapse into bed.
Kaylee experienced some complications with the surgery. She bleed badly when coming off the bypass which the doctors were all set up and prepared to deal with. She did keep bleeding badly though and she was given lots of blood and clotting factors to stop the bleeding and keep her going. Unfortunately this means we need to watch her shunt very carefully to make sure that the clotting factors given to Kaylee to save her life don't cause the shunt to fill up with clots. It is a juggling act for the doctors at the moment. There are a few different options to take if things go badly in the next 24 hours, one being to go back in for another surgery. She is being watched very closely in PICU at the moment.
Jon is here with me, the other kids are with Bill and Kester.
Please continue all prayers.
The earliest we are likely to know more is tomorrow evening, but it may be days.
Kaylee experienced some complications with the surgery. She bleed badly when coming off the bypass which the doctors were all set up and prepared to deal with. She did keep bleeding badly though and she was given lots of blood and clotting factors to stop the bleeding and keep her going. Unfortunately this means we need to watch her shunt very carefully to make sure that the clotting factors given to Kaylee to save her life don't cause the shunt to fill up with clots. It is a juggling act for the doctors at the moment. There are a few different options to take if things go badly in the next 24 hours, one being to go back in for another surgery. She is being watched very closely in PICU at the moment.
Jon is here with me, the other kids are with Bill and Kester.
Please continue all prayers.
The earliest we are likely to know more is tomorrow evening, but it may be days.
Melbourne: changable weather
This morning I got in early and the night nurse told me Kaylee had a good night. We hung out together and I did some computer stuff, taking time to write a long e-mail to one of my favourite friends. We had plans of a test today to look at her reflux some more but other than that, a quiet day ahead of us - I was planning a second attempt at finding a shopping centre later that afternoon. We did normal things like weigh and bath her - a relief to get more ultrasound gel out of her hair. I had a big cuddle then we settled again. The young student nurse was given the job of taking obs (which my nurse thoroughly checked each time) and the other babies kept the nurses moving every minute with their demands. Kaylee had perhaps one dip in her heartbeat the whole time and was generally quiet and happy, opening her eyes to stare knowingly at me at times or sleeping.
Then a friend dropped in a box of my stuff and I went back to Ronald McDonald House to put it away. I was walking back to the hospital when my phone rang. It was Ali, my Case Nurse. I presumed she was ringing to talk to me about the planned test or perhaps tell me that Genetics wanted to talk to me. She was, in fact, ringing to tell me that my baby was navy blue from head to foot. It took an eternity to get back to the ward where the room was full of people putting lines in, bagging, administering drugs etc.
Seeing a baby surrounded by all of this, with tiny blue toes poking out, is gut wrenching and surreal. Two things so totally different, meshed together. Death and birth brushing against each other. Innocence and pain. Love and the crushing effects of sin.
I didn't want to tell anyone.
There is a comic that has a man looking thoroughly bedraggled and sitting in a bar. He is leaning over to the bartender saying "I'd tell you all about it but I don't want to hear it myself"
That is how I felt.
I didn't want to be the bringer of this news to those who love Kaylee.
And each time the words left my mouth it made it all the more real.
When I got down to ICU with her she was stoned out of her mind. The peaceful sleep of the morning now a slack-jawed sleep of the drugged.
I think I mentioned before that I can tell how well Kaylee is doing by what kind of chair I have. Today in ICU I didn't even sit down.
She is in surgery as I write this. The surgery is one that these doctors do often and the odds are in Kaylee's favour in spite of her size....just. It isn't a surgery that will fix her heart but it is one that will hopefully get her through the next few months until she is big enough and strong enough for a full repair. We are hoping to keep it down to three surgeries before her first birthday so hopefully they will get the right size shunt first time.
Jon is on his way over. I can only imagine what he is going through.
I am going to spend some time here in the quiet of my room where I can sit without anyone asking me how I am or if I need anything and cry before I have a sleep, express and eat. The three things I need to do so I can keep taking care of her.
Tuesday, October 11, 2011
Bittersweet
I got a room at the Ronald McDonald House today.
I will get more sleep and have a room where I can go to decompress or cry as needed.
And I have to walk away from my daughter to do it.
The choices that I am being served at the moment officially suck.
I am being carried and watched over. I feel God with me every day giving me strength and direction and love... but it doesn't make it easy.
I fantasise about having all my kids in the same room. Sleeping next to my husband. Picking up my baby and putting her to the breast. A day without a breast pump.
And in the midst of this I whisper thanks.
For the two weeks in Tasmania which just "happened" to be at the same time as my wedding anniversary and Christopher's fourth birthday.
For the rest.
For good nurses and doctors.
For comfort.
For beauty.
For an amazing husband.
For beautiful children.
For a million different things.
To say thank you for these things sometimes takes effort. Truly a sacrifice of praise from my heart. The things that suck and hurt and frustrate do not become less because of the beauty of my life but I refuse to allow that pain to eclipse the beauty.
Today I held my daughter's tiny hand as she leaned her cheek against me and fell asleep.
Things suck....but things are also amazing.
I will get more sleep and have a room where I can go to decompress or cry as needed.
And I have to walk away from my daughter to do it.
The choices that I am being served at the moment officially suck.
I am being carried and watched over. I feel God with me every day giving me strength and direction and love... but it doesn't make it easy.
I fantasise about having all my kids in the same room. Sleeping next to my husband. Picking up my baby and putting her to the breast. A day without a breast pump.
And in the midst of this I whisper thanks.
For the two weeks in Tasmania which just "happened" to be at the same time as my wedding anniversary and Christopher's fourth birthday.
For the rest.
For good nurses and doctors.
For comfort.
For beauty.
For an amazing husband.
For beautiful children.
For a million different things.
To say thank you for these things sometimes takes effort. Truly a sacrifice of praise from my heart. The things that suck and hurt and frustrate do not become less because of the beauty of my life but I refuse to allow that pain to eclipse the beauty.
Today I held my daughter's tiny hand as she leaned her cheek against me and fell asleep.
Things suck....but things are also amazing.
Monday, October 10, 2011
Things I love about my support team
I started blogging our journey for a few reasons. So that friends and family would have a central point to get information without us having to tell the same story repeatedly, so that we would have a record of what happened, so that I could do a bit of writing therapy and also to give others insight into this mad, crazy world of hospitals, special needs and critically ill babies. Before going through this I would have had no idea how best to support someone in my situation. I thought I would write down some of the things that my support team have done for me that I found most useful so if my readers are ever in a place where they can support someone like me, they can get a bit of an idea of what may help.
(1) My support people call before coming around. They recognise that things happen sometimes with no notice whatsoever and even if we had arranged a visit it may not be convenient so they ring and are prepared to leave at the drop of a hat.
(2) My support people listen. I have talked more in the last month than I did in the previous YEAR. I have found that sometimes I would just need to decompress and especially in the first few weeks I would talk non-stop when with people I trusted. Now, I sometimes want to have "normal" conversation. My support people take my lead.
(3) My support people don't push me to talk about things that I don't want to. Some of the things I have seen and Kaylee has gone through literally turn my stomach to even think about and some aspects of Kaylee's diagnosis are very confronting to think about. Sometimes I have seen people before having a chance to talk over a new piece of information with Jon and haven't felt comfortable sharing it quite yet. Sometimes I just want a few minutes where I am not having to talk medical stuff. Also, my whole attention is taken up with working out TOMORROW so while I do have plans at the back of my head about Kaylee's long term care, I don't necessarily want to discuss what we will be doing in five or ten years time. So while my support people ask gentle questions, they do not get offended or push any boundaries if I choose not to share or avoid some topics.
(4) My support people follow instructions. Especially in the early days I felt like I do at the height of labour when I am completely focussed on the task at hand and don't always have my best manners on when I ask for something. My support people do exactly what I asked, exactly the way I ask for it. If I ask for something specific and they can't get it exactly the way I ask for it, they let me know as soon as possible and ask me for further instructions.
(5) My support people are focussed on me. Most of them love Kaylee and love a chance to visit her, but their primary role is to support me so that I can care for Kaylee. So if they don't get to visit Kaylee, it is no drama. They recognise that the best thing they can do for Kaylee is to support me so if our visit is restricted to a cuppa downstairs rather than a visit on the ward they are content with that. Several support people have been happy to drop off stuff and go, allowing me to sleep rather than converse if I needed it. They make it all about me and I love them for it!
(6) My support people do not ask to hold Kaylee. Kaylee's cuddles are precious and sometimes exhaust her so I selfishly prefer to keep them all for Jon, the kids and I. Thankfully my support people have recognised this and don't treat me like I am selfish or over protective or throw hissy fits!
(7) My support people recognise that being sad or angry is OK. They don't try and make me feel differently or "cheer me up". They don't get shocked or upset if I have negative feelings or thoughts. They don't think that I am not coping if I have these feelings. They let me feel it, talk about it, pray about it and move on when I am ready.
(8) My support people don't make their feelings my problem. Many of my support people have been upset about what is going on. Many of them are personally invested in Kaylee and love her dearly as their grand daughter, niece, honorary niece etc. Many of are deeply moved by our adventure and have lots of feelings about their own kids, past or lives that are triggered by what is happening. But my support people make sure this doesn't stop them providing the care they said they would give me. They find their support from others, get the rest and nutrition they need to function and step up to help me the same way I step up to help Kaylee.
(9) My support people don't bite off more than they can chew. They only offer what they know they provide and they let me know if their situation changes as soon as possible. When I am relying on them so heavily if they said they were going to do something then didn't do it or didn't do it in the time frame they promised it is actually worse than if they never said they'd do it at all. It would be if they ran up and kicked a crutch out from under me. Some people get a bit of a high out of making promises of support but drop the ball when it comes to keeping those promises. Thankfully, my support people don't do that!
(10) My support people are very practical! They realise that feeding me, offering to visit me, asking for or simply meeting my needs and feeding my family are important things. They also realise that prayer is pretty practical too!
I have been humbled and awed by my support people and have been blessed by their ministry to me. I hope one day to pass the blessing on to someone else who needs it.
(1) My support people call before coming around. They recognise that things happen sometimes with no notice whatsoever and even if we had arranged a visit it may not be convenient so they ring and are prepared to leave at the drop of a hat.
(2) My support people listen. I have talked more in the last month than I did in the previous YEAR. I have found that sometimes I would just need to decompress and especially in the first few weeks I would talk non-stop when with people I trusted. Now, I sometimes want to have "normal" conversation. My support people take my lead.
(3) My support people don't push me to talk about things that I don't want to. Some of the things I have seen and Kaylee has gone through literally turn my stomach to even think about and some aspects of Kaylee's diagnosis are very confronting to think about. Sometimes I have seen people before having a chance to talk over a new piece of information with Jon and haven't felt comfortable sharing it quite yet. Sometimes I just want a few minutes where I am not having to talk medical stuff. Also, my whole attention is taken up with working out TOMORROW so while I do have plans at the back of my head about Kaylee's long term care, I don't necessarily want to discuss what we will be doing in five or ten years time. So while my support people ask gentle questions, they do not get offended or push any boundaries if I choose not to share or avoid some topics.
(4) My support people follow instructions. Especially in the early days I felt like I do at the height of labour when I am completely focussed on the task at hand and don't always have my best manners on when I ask for something. My support people do exactly what I asked, exactly the way I ask for it. If I ask for something specific and they can't get it exactly the way I ask for it, they let me know as soon as possible and ask me for further instructions.
(5) My support people are focussed on me. Most of them love Kaylee and love a chance to visit her, but their primary role is to support me so that I can care for Kaylee. So if they don't get to visit Kaylee, it is no drama. They recognise that the best thing they can do for Kaylee is to support me so if our visit is restricted to a cuppa downstairs rather than a visit on the ward they are content with that. Several support people have been happy to drop off stuff and go, allowing me to sleep rather than converse if I needed it. They make it all about me and I love them for it!
(6) My support people do not ask to hold Kaylee. Kaylee's cuddles are precious and sometimes exhaust her so I selfishly prefer to keep them all for Jon, the kids and I. Thankfully my support people have recognised this and don't treat me like I am selfish or over protective or throw hissy fits!
(7) My support people recognise that being sad or angry is OK. They don't try and make me feel differently or "cheer me up". They don't get shocked or upset if I have negative feelings or thoughts. They don't think that I am not coping if I have these feelings. They let me feel it, talk about it, pray about it and move on when I am ready.
(8) My support people don't make their feelings my problem. Many of my support people have been upset about what is going on. Many of them are personally invested in Kaylee and love her dearly as their grand daughter, niece, honorary niece etc. Many of are deeply moved by our adventure and have lots of feelings about their own kids, past or lives that are triggered by what is happening. But my support people make sure this doesn't stop them providing the care they said they would give me. They find their support from others, get the rest and nutrition they need to function and step up to help me the same way I step up to help Kaylee.
(9) My support people don't bite off more than they can chew. They only offer what they know they provide and they let me know if their situation changes as soon as possible. When I am relying on them so heavily if they said they were going to do something then didn't do it or didn't do it in the time frame they promised it is actually worse than if they never said they'd do it at all. It would be if they ran up and kicked a crutch out from under me. Some people get a bit of a high out of making promises of support but drop the ball when it comes to keeping those promises. Thankfully, my support people don't do that!
(10) My support people are very practical! They realise that feeding me, offering to visit me, asking for or simply meeting my needs and feeding my family are important things. They also realise that prayer is pretty practical too!
I have been humbled and awed by my support people and have been blessed by their ministry to me. I hope one day to pass the blessing on to someone else who needs it.
Sunday, October 09, 2011
Writing from a familiar place
It's crazy being back here.
I am across the room from where we were two weeks ago.
I am a more confident Hospital Mummy, pushing buttons on machines, picking Kaylee up without a spotting team, replacing probes and other medical bling and bathing her on my own. I even discuss my observations of Kaylee's condition with medical staff with a reasonable degree of confidence in my own expertise - I am becoming an expert on reading Kaylee. But being here also makes me see her fragility and keenly feel my own lack of ability to make it all better. The nurses here hardly sit down all shift. I look forward to seeing my favourite nurses, lactation consultants and other support staff in the coming week but dread the hustle and bustle of week-day RCH (royal children's hospital). I am made breathless by the amount that is on my to-do list for tomorrow. I miss Launceston. The slower pace and privacy suited me well. I am glad I got to recharge. And when Kaylee starts to go blue, I am glad we are here where we can actually, maybe, do something more to help her.
It has been quite some time since I dreamed of anything but sick babies and hospital procedures. It has a way of getting under your skin, being here.
And if you have stuck with us on this journey thus far you are doing well. Given the choice, I think I would have slipped back into a more comfortable life and shut out this world of baby's blood and wonky hearts. But I have the reward of Kaylee if I stay here, so I stay. You who have walked with me on this journey, who have had the courage and the fortitude to keep walking at my side and encouraging me when you had the choice of walking away, you who have listened to me tell the same story over and over again for a month - thank you. If you had told me six weeks ago I would be on a first name basis with nurses and doctors in three different hospitals in two different states I would have freaked out. But I have found that you are given the grace for each moment. I am sad, tired and apprehensive of what tomorrow will bring in spite of my best resolve. But I am also thankful, blessed and carried. Psalms makes sense in a way it never has before.
I am across the room from where we were two weeks ago.
I am a more confident Hospital Mummy, pushing buttons on machines, picking Kaylee up without a spotting team, replacing probes and other medical bling and bathing her on my own. I even discuss my observations of Kaylee's condition with medical staff with a reasonable degree of confidence in my own expertise - I am becoming an expert on reading Kaylee. But being here also makes me see her fragility and keenly feel my own lack of ability to make it all better. The nurses here hardly sit down all shift. I look forward to seeing my favourite nurses, lactation consultants and other support staff in the coming week but dread the hustle and bustle of week-day RCH (royal children's hospital). I am made breathless by the amount that is on my to-do list for tomorrow. I miss Launceston. The slower pace and privacy suited me well. I am glad I got to recharge. And when Kaylee starts to go blue, I am glad we are here where we can actually, maybe, do something more to help her.
It has been quite some time since I dreamed of anything but sick babies and hospital procedures. It has a way of getting under your skin, being here.
And if you have stuck with us on this journey thus far you are doing well. Given the choice, I think I would have slipped back into a more comfortable life and shut out this world of baby's blood and wonky hearts. But I have the reward of Kaylee if I stay here, so I stay. You who have walked with me on this journey, who have had the courage and the fortitude to keep walking at my side and encouraging me when you had the choice of walking away, you who have listened to me tell the same story over and over again for a month - thank you. If you had told me six weeks ago I would be on a first name basis with nurses and doctors in three different hospitals in two different states I would have freaked out. But I have found that you are given the grace for each moment. I am sad, tired and apprehensive of what tomorrow will bring in spite of my best resolve. But I am also thankful, blessed and carried. Psalms makes sense in a way it never has before.
Saturday, October 08, 2011
The Baby Has Landed
We finally flew out at 4:30pm.
We were further delayed by the plane being needed for a more urgent case. I was not too displeased by this though because (a) it is always a good thing if they think you're healthy enough to delay and (b) it meant that Kaylee and I ended up flying over together on the RFD (Royal Flying Doctor's) air ambulance with Jackie - one of my favourite nurses from Hobart. Managing not to be separated and avoiding a commercial flight made my day MUCH better than anticipated.
Our next step is to observe for a few days and decide from there.
If Kaylee is deemed to be not responding to the meds sufficiently we will look at having a shunt put in her heart which is a much less complex operation than a full TOF repair and operate again when she is older to do the TOF repair. If Kaylee is deemed to be responding to the meds well enough, we will go back home to Launceston and continue on them - most likely staying in hospital until Kaylee is old enough for her full TOF repair. I am praying for a third option - the miraculous fixing of Kaylee's heart!
The most definite response to the question of how long we will be in Melbourne I can give is 'a while'. More than three days but most likely less than three weeks.
Meanwhile Christopher went to hospital last night with asthma and all the other kids have colds. Never a dull moment with the Guest family.
**UPDATE** Christopher was not admitted to hospital. He and Jon got home in the early hours of the morning.
And the adventure continues....
We were further delayed by the plane being needed for a more urgent case. I was not too displeased by this though because (a) it is always a good thing if they think you're healthy enough to delay and (b) it meant that Kaylee and I ended up flying over together on the RFD (Royal Flying Doctor's) air ambulance with Jackie - one of my favourite nurses from Hobart. Managing not to be separated and avoiding a commercial flight made my day MUCH better than anticipated.
Our next step is to observe for a few days and decide from there.
If Kaylee is deemed to be not responding to the meds sufficiently we will look at having a shunt put in her heart which is a much less complex operation than a full TOF repair and operate again when she is older to do the TOF repair. If Kaylee is deemed to be responding to the meds well enough, we will go back home to Launceston and continue on them - most likely staying in hospital until Kaylee is old enough for her full TOF repair. I am praying for a third option - the miraculous fixing of Kaylee's heart!
The most definite response to the question of how long we will be in Melbourne I can give is 'a while'. More than three days but most likely less than three weeks.
Meanwhile Christopher went to hospital last night with asthma and all the other kids have colds. Never a dull moment with the Guest family.
**UPDATE** Christopher was not admitted to hospital. He and Jon got home in the early hours of the morning.
And the adventure continues....
Friday, October 07, 2011
waiting...
I can't believe we've been doing this for a month.
We are still in Launceston. We had Kaylee loaded up and literally at the door ready to fly out when the Flying Doctor's Service had a higher priority case take the plane. Then when the plane was available, there were storms brewing over the Strait and Melbourne and they were unwilling to fly a fixed wing double-prop plane through those storms - especially with a sick baby in the back! My nurses were working hard to cancel my commercial flight out at 6am when there was a call from the Flying Doctor's to say they were re-evaluating the weather. As soon as Sandy, my nurse, put down the phone it rang again - the travel co-ordinator calling to say she had cancelled my flight. So there was a mad scramble to rebook that flight only to find out that the storms were too bad for the little air ambulance to fly through and Kaylee would not be flying out after all. At this stage I had a shower and went to bed! It continued all night and I woke up before sunrise with the director of the hospital standing over my bed quite cross that I had not been on the 6am flight that the hospital had paid for. I was too groggy to explain that I was not going on a plane until my baby was on a plane. I have NO desire to fly over, find out that Kaylee couldn't come over for some reason, and then spend the weekend in Melbourne without my baby, unable to use the breast pumps or sleep at the Royal Children's Hospital because Kaylee was not there. So at last check, we are planning for Kaylee to be leaving about 10:30am and hopefully once she is gone we can book me on a 2pm flight. And if the director of the hospital has a problem with that, I will pay for my own darned flight!
While all this is frustrating, I am relieved not to be rushing a very sick baby out the door. NOT being the highest priority case in the state is fine by me.
I am insanely jealous about now of mothers who have healthy kids.
I am sick of travelling.
I want to take Kaylee home to my other kids and my husband and just have a normal day with all of us under the same roof.
Just having all of my kids in the same room for the first time would be amazing.
Kaylee is tolerating her hourly feeds well. Her de-sats seem unrelated to the change in her feeding. She seems to be waking up, spending much more time looking around. She is maintaining her body temperature well which is great. It is easier to go accross this time knowing where we are going and having friends ready to greet me.
I am simply praying for wisdom for our doctors at the moment. There are to many variables to try and speculate what our next step from here will be. The medication she is on is helping, but she can't leave the hospital while she is taking it. Doing the operation now would get it over with but she is still so small and delicate. And there are a whole lot of other options, none of which are much more pleasing than those two. I am kind of praying they invent some miracle pill to fix Kaylee's heart before we get to Melbourne. In the next 45 minutes would be good so they can post it down and we don't need to go at all!
But I will follow the path laid before me.
Not because I am brave or strong, but because I have no other real option.
I will take strength from my God for this journey.
And one day, this will all be a memory.
We are still in Launceston. We had Kaylee loaded up and literally at the door ready to fly out when the Flying Doctor's Service had a higher priority case take the plane. Then when the plane was available, there were storms brewing over the Strait and Melbourne and they were unwilling to fly a fixed wing double-prop plane through those storms - especially with a sick baby in the back! My nurses were working hard to cancel my commercial flight out at 6am when there was a call from the Flying Doctor's to say they were re-evaluating the weather. As soon as Sandy, my nurse, put down the phone it rang again - the travel co-ordinator calling to say she had cancelled my flight. So there was a mad scramble to rebook that flight only to find out that the storms were too bad for the little air ambulance to fly through and Kaylee would not be flying out after all. At this stage I had a shower and went to bed! It continued all night and I woke up before sunrise with the director of the hospital standing over my bed quite cross that I had not been on the 6am flight that the hospital had paid for. I was too groggy to explain that I was not going on a plane until my baby was on a plane. I have NO desire to fly over, find out that Kaylee couldn't come over for some reason, and then spend the weekend in Melbourne without my baby, unable to use the breast pumps or sleep at the Royal Children's Hospital because Kaylee was not there. So at last check, we are planning for Kaylee to be leaving about 10:30am and hopefully once she is gone we can book me on a 2pm flight. And if the director of the hospital has a problem with that, I will pay for my own darned flight!
While all this is frustrating, I am relieved not to be rushing a very sick baby out the door. NOT being the highest priority case in the state is fine by me.
I am insanely jealous about now of mothers who have healthy kids.
I am sick of travelling.
I want to take Kaylee home to my other kids and my husband and just have a normal day with all of us under the same roof.
Just having all of my kids in the same room for the first time would be amazing.
Kaylee is tolerating her hourly feeds well. Her de-sats seem unrelated to the change in her feeding. She seems to be waking up, spending much more time looking around. She is maintaining her body temperature well which is great. It is easier to go accross this time knowing where we are going and having friends ready to greet me.
I am simply praying for wisdom for our doctors at the moment. There are to many variables to try and speculate what our next step from here will be. The medication she is on is helping, but she can't leave the hospital while she is taking it. Doing the operation now would get it over with but she is still so small and delicate. And there are a whole lot of other options, none of which are much more pleasing than those two. I am kind of praying they invent some miracle pill to fix Kaylee's heart before we get to Melbourne. In the next 45 minutes would be good so they can post it down and we don't need to go at all!
But I will follow the path laid before me.
Not because I am brave or strong, but because I have no other real option.
I will take strength from my God for this journey.
And one day, this will all be a memory.
There and back again...and there again.
Hi ho, hi ho, it's off to Melbourne we go.
Unfortunately, Kaylee has started to struggle a little with her oxygen levels. We have put her on a medication to help with it but we are on our way to Melbourne to be reassessed and see if we need to move her heart surgery forward or treat her differently. We have no clue as to how long we will be there or what will happen while we are there but we are just riding the train. Thankfully Jon and I got to spend a night together and I got to spend Christopher's fourth birthday with him. While my inner toddler is in the middle of a full blown tantrum, kicking and screaming at the current turn of events, I am pleased that we have this option and glad to leave this decision in the hands of my doctors. Some of Kaylee's episodes of her oxygen saturation levels dipping (de-sats, in the medical lingo) have been a little scary with blue skin and a bit of oxygen needing to be wafted at her. She often responds to what we call the magic pillow - that is, having her cheek against my skin (preferably my breast) when this is going on. Fortunately, she has been responding to her new meds beautifully but decisions regarding this medicine, possible side effects of the medicine, how long we can sustain it's use, how Kaylee may respond to surgery at this time etc. are big complex ones and yes, I am very glad I don't have to make them.
So we are on the road again.
VERY glad we got a week in Launceston to relax and refuel.
I have taken the last two days simply to decompress and soak up my husband and kids and I am thankful for that.
The transport is not quite so scary this time as Kaylee does not need to be intubated or have any scary looking machines and she is being transported by nurses I know to the care of other nurses I know. It is not a huge emergency. I know with a fair degree of certainty that when I get to the hospital tomorrow morning Kaylee will likely be in a similar state to when I kiss her goodbye tonight.
I am thankful for a million things.
I rage at a hundred things.
Through it all, I praise Him.
Unfortunately, Kaylee has started to struggle a little with her oxygen levels. We have put her on a medication to help with it but we are on our way to Melbourne to be reassessed and see if we need to move her heart surgery forward or treat her differently. We have no clue as to how long we will be there or what will happen while we are there but we are just riding the train. Thankfully Jon and I got to spend a night together and I got to spend Christopher's fourth birthday with him. While my inner toddler is in the middle of a full blown tantrum, kicking and screaming at the current turn of events, I am pleased that we have this option and glad to leave this decision in the hands of my doctors. Some of Kaylee's episodes of her oxygen saturation levels dipping (de-sats, in the medical lingo) have been a little scary with blue skin and a bit of oxygen needing to be wafted at her. She often responds to what we call the magic pillow - that is, having her cheek against my skin (preferably my breast) when this is going on. Fortunately, she has been responding to her new meds beautifully but decisions regarding this medicine, possible side effects of the medicine, how long we can sustain it's use, how Kaylee may respond to surgery at this time etc. are big complex ones and yes, I am very glad I don't have to make them.
So we are on the road again.
VERY glad we got a week in Launceston to relax and refuel.
I have taken the last two days simply to decompress and soak up my husband and kids and I am thankful for that.
The transport is not quite so scary this time as Kaylee does not need to be intubated or have any scary looking machines and she is being transported by nurses I know to the care of other nurses I know. It is not a huge emergency. I know with a fair degree of certainty that when I get to the hospital tomorrow morning Kaylee will likely be in a similar state to when I kiss her goodbye tonight.
I am thankful for a million things.
I rage at a hundred things.
Through it all, I praise Him.
Monday, October 03, 2011
Standing at a cross roads
We are constantly standing at a cross roads and I have no idea which way we will go. Today we had our first Kaylee bath and tucked her into an open cot. She is doing FANTASTIC today. Today we are talking upping feeds, trialling bolus feeds later this week, tentative sketches of what we will do when it comes time to transition home (still a few weeks away at this stage) and long term cardio monitoring etc. But we are also concious that if she fails to maintain saturation levels we could well be on an early trip to Melbourne. Things could go one way or the other and I don't really get a vote. I am here for the ride on the runaway train of Kaylee's needs. Except it is not out of control, it is just out of MY control.
So today, I am sitting back. I am munching on some yummy snacks. I am tackling the hefty pile of paperwork that I need to do. I am taking a break to read my novel, have a coffee with a friend (and a mars bar cheesecake!), drink deeply from God's Word, and surf online. I am enjoying my baby's first bath and revelling in her being in an open cot with no needles poking into her.
I will look forward to the blessings to come, and the worries - well - I'm leaving them where they belong.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
So today, I am sitting back. I am munching on some yummy snacks. I am tackling the hefty pile of paperwork that I need to do. I am taking a break to read my novel, have a coffee with a friend (and a mars bar cheesecake!), drink deeply from God's Word, and surf online. I am enjoying my baby's first bath and revelling in her being in an open cot with no needles poking into her.
I will look forward to the blessings to come, and the worries - well - I'm leaving them where they belong.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
Sunday, October 02, 2011
To The Glorious Ones
Today I was reading psalm 16 and it spoke to me very much.
Verse 3 stood out to me particularly. In the NIV it says:
As for the saints who are in the land, they are the glorious ones in whom is all my delight.
So many people over the last three weeks have been our glorious ones - our "heroes" as the NLT puts it.
Friends who have cared for our children, who have fetched random items, who have prayed.
Because of the Glorious Ones in our life my freezer is being kept full and we have more cake than we know what to do with (seriously, Jon is drowning in cake right now).
Friends who have messaged me to say they were woken by an urge to pray for me at 12:30am - which was just when I had locked myself out of my room while wearing underwear and a towel.
And the Glorious Ones whom I have never met. Friends of friends who have sent us packages of goodies - baby items, little luxuries etc. Online friends who I have swapped only homeschooling stories or facebook status with who have cooked me meals, sent me fruit baskets, nourished me body and soul. Prayed for me.
The silent Glorious Ones who have told friends to tell friends to tell friends to let me know they are praying for me. People whose names are not even slightly familiar who have interceded for us, who I cannot hope to thank in person until we are all in Glory together.
The staff members - doctors, nurses, other - who have let me know in quiet ways that they are praying for me. Who have served us with hands of angels.
I cannot ever think to thank all of those who have been there for us.
But if any of you are reading this, my Glorious Ones, My Heroes.
Thank you.
Verse 3 stood out to me particularly. In the NIV it says:
As for the saints who are in the land, they are the glorious ones in whom is all my delight.
So many people over the last three weeks have been our glorious ones - our "heroes" as the NLT puts it.
Friends who have cared for our children, who have fetched random items, who have prayed.
Because of the Glorious Ones in our life my freezer is being kept full and we have more cake than we know what to do with (seriously, Jon is drowning in cake right now).
Friends who have messaged me to say they were woken by an urge to pray for me at 12:30am - which was just when I had locked myself out of my room while wearing underwear and a towel.
And the Glorious Ones whom I have never met. Friends of friends who have sent us packages of goodies - baby items, little luxuries etc. Online friends who I have swapped only homeschooling stories or facebook status with who have cooked me meals, sent me fruit baskets, nourished me body and soul. Prayed for me.
The silent Glorious Ones who have told friends to tell friends to tell friends to let me know they are praying for me. People whose names are not even slightly familiar who have interceded for us, who I cannot hope to thank in person until we are all in Glory together.
The staff members - doctors, nurses, other - who have let me know in quiet ways that they are praying for me. Who have served us with hands of angels.
I cannot ever think to thank all of those who have been there for us.
But if any of you are reading this, my Glorious Ones, My Heroes.
Thank you.
Saturday, October 01, 2011
It's a bright, sun-shiny day!
[written yesterday but blogger didn't let me post until now.]
I woke up this morning and had to walk all of two metres to touch my daughter - I could see her from where I was laying.
I held her while I was wearing my PJ's.
I did not ride a lift or climb flights of stairs until after 10am - and then only because I wanted to.
Right now if I look around the room I cannót see another single person other than Kaylee and the peace is amazing.
When I go outside, I know which direction to walk to get to a supermarket, bank, restaurant or anything else I may want and I know I will not get lost and miss expressing or changing Kaylee's nappy.
This afternoon I will see my children and they will have travelled for under an hour to come and see me and will be going back to their own beds tonight.
These things are AMAZING.
Tomorrow Kaylee will have her last dose of antibiotics and after that she will be a puncture free baby! The antibiotics, by the way, were prescribed because a blood culture came back with Golden Staph which was probably a contaminant because Kaylee was not sick enough to have Golden Staph! Also her two lumbar punctures came back inconclusive. They got a little bit of blood in them so it is likely that the white blood cells were from that rather than her body trying to fight off meningitis. But we had to treat for these illnesses even though we suspect she did not have them because we simply could not take the risk with her heart issues etc. I am frustrated at the added trauma that this caused however I am also happy that we did not CONCLUSIVELY have these illnesses because that would have made for a very sick baby. Kaylee had her drip re-inserted last night after it "tissued" (poked out of the vein into the tissues of her arm) but the Dr got it in the first time which is amazing (officially the second time ever someone has got a vein first try on Kaylee) and if anything happens with this drip they are not going to put another one in so they can conserve her veins. They will just give her last bit of antibiotics as an injection. As of tomorrow Kaylee's only medical bling will be her NG tube and some monitoring wires - YAY!
Once she does not have an arm splint on for her drip, I will be able to put her in some comfortable warm clothes and she will go to an OPEN COT. Yes, my baby girl in a big girl cot! A well girl cot anyway. This week we will look at changing her from continuous feeds to bolus feeds (every hour to start with, then every few hours etc.) and once she is tolerating that fine (could take a day, could take a couple of weeks) we will look at feeding her partially with a special bottle for kids with cleft palates and other issues. Any food she takes orally is fantastic however we need to make sure she doesn't exhaust herself and use more calories than is in her food when she is using the bottle. She needs to grow and get strong enough for her heart operation.
I am loving my Launnie nurses and doctors so far. I am also getting far more rest here than anywhere else we have been so far which is doing me good. I am a fairly comfortable NICU Mum now because I have started (respectfully) bossing the doctors and nurses a bit and helping myself to supplies from their special cupboards and drawers. The doctors and nurses actually love this and the more hands on I am, the easier the nurse's job is and the sooner we get home. Everyone's a winner!
We are getting so much closer to home.
Thank-you Lord!
I woke up this morning and had to walk all of two metres to touch my daughter - I could see her from where I was laying.
I held her while I was wearing my PJ's.
I did not ride a lift or climb flights of stairs until after 10am - and then only because I wanted to.
Right now if I look around the room I cannót see another single person other than Kaylee and the peace is amazing.
When I go outside, I know which direction to walk to get to a supermarket, bank, restaurant or anything else I may want and I know I will not get lost and miss expressing or changing Kaylee's nappy.
This afternoon I will see my children and they will have travelled for under an hour to come and see me and will be going back to their own beds tonight.
These things are AMAZING.
Tomorrow Kaylee will have her last dose of antibiotics and after that she will be a puncture free baby! The antibiotics, by the way, were prescribed because a blood culture came back with Golden Staph which was probably a contaminant because Kaylee was not sick enough to have Golden Staph! Also her two lumbar punctures came back inconclusive. They got a little bit of blood in them so it is likely that the white blood cells were from that rather than her body trying to fight off meningitis. But we had to treat for these illnesses even though we suspect she did not have them because we simply could not take the risk with her heart issues etc. I am frustrated at the added trauma that this caused however I am also happy that we did not CONCLUSIVELY have these illnesses because that would have made for a very sick baby. Kaylee had her drip re-inserted last night after it "tissued" (poked out of the vein into the tissues of her arm) but the Dr got it in the first time which is amazing (officially the second time ever someone has got a vein first try on Kaylee) and if anything happens with this drip they are not going to put another one in so they can conserve her veins. They will just give her last bit of antibiotics as an injection. As of tomorrow Kaylee's only medical bling will be her NG tube and some monitoring wires - YAY!
Once she does not have an arm splint on for her drip, I will be able to put her in some comfortable warm clothes and she will go to an OPEN COT. Yes, my baby girl in a big girl cot! A well girl cot anyway. This week we will look at changing her from continuous feeds to bolus feeds (every hour to start with, then every few hours etc.) and once she is tolerating that fine (could take a day, could take a couple of weeks) we will look at feeding her partially with a special bottle for kids with cleft palates and other issues. Any food she takes orally is fantastic however we need to make sure she doesn't exhaust herself and use more calories than is in her food when she is using the bottle. She needs to grow and get strong enough for her heart operation.
I am loving my Launnie nurses and doctors so far. I am also getting far more rest here than anywhere else we have been so far which is doing me good. I am a fairly comfortable NICU Mum now because I have started (respectfully) bossing the doctors and nurses a bit and helping myself to supplies from their special cupboards and drawers. The doctors and nurses actually love this and the more hands on I am, the easier the nurse's job is and the sooner we get home. Everyone's a winner!
We are getting so much closer to home.
Thank-you Lord!
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