It took a while for me to get back to this and much of this time is a blur in my mind but as part 1 is the most viewed page on my blog, I think the rest of this story needs to be told.
You can read part 1 HERE
All day I was talking to people and trying to take in what was happening. I was striving to do everything I could to make milk for Kaylee and asking repeatedly to see the lactation consultant so I could just make sure I was doing everything I could but whenever I asked she was away at lunch or busy elsewhere. Kaylee's read outs, features and symptoms were causing interest and cardiographers, radiographers, registrars and the odd medical student were all coming in and quietly, respectfully, asking questions or performing tests. By mid-afternoon there was a tentative diagnosis of her heart condition - Tetralogy of Fallot with transposition of the major arteries. The scariest of these was the transposition of the major arteries. If this diagnosis was confirmed, it meant that without surgery Kaylee would probably die within the next 24 hours. So arrangements were being made to fly Kaylee to Melbourne. It was gently explained to me that Kaylee would need some very heavy duty drugs, sedated and intubated for transportation to Melbourne via. air ambulance and that I would have to go by commercial flight the next morning. Previously, I was rarely in a different room to my newborns. Now, Kaylee was going to be in a different state. Across a body of water. With strangers.
I had kept in touch with Jon by phone during the day and when I got confirmation that Kaylee was flying out that night, he was on his way in with the other children and his parents. When they arrived I explained the situation to Jon over the heads of the children before I ferried them in, two at a time, to meet their sister. They all gently touched her and said a few words to her. I hugged them and they went home. I found out that the lactation consultant had seen me taking the children in to meet their sister and decided that speaking to her was not priority for me - and gone home. To say I was furious would be the understatement of the century. While the lactation consultant would probably not have told me anything I did not know I needed to hear it all said by someone with that official title so I knew I had done everything I could do to protect my milk supply. At that moment, I could do three things for my baby: touch her, sing to her and make milk for her and I was determined to do all three of these things in an exemplary manner.
Trying to describe what was happening inside and out that day is like trying to describe Niagra Falls using a glass of water collected from there. I could write for days and still not encapsulate what was going on in its entirety. The ache within me was my daughter was leaving without me. I would not be there to protect her and advocate for her. At this time there was no place in my heart and mind to even consider anything outside loving her, keeping her breathing, keeping her heart beating and getting nutrition into her. There were a thousand things to take in and think about. Vicky, the young registrar who had first seen Kaylee, put her arm accross my shoulders as I sat at Kaylee's side told me that the doctor who would be transporting Kaylee was a friend of hers who was excellent. She started to get Kaylee ready for me to have a quick cuddle. Someone asked if I was "allowed" to. Vicky shot a withering glance in their direction and stated simply "She is her mother." I cradled her in my arms for a moment and tried to push every ounce of my strength through my skin into her frail little body. We placed her back on the warmer. Over and over again I sang to Kaylee. When I was pregnant I had been given Psalm 121 and the hymn "When He Cometh" to hold in my heart and I quoted the verses over and over to myself and sang the hymn to Kaylee over and over.
The picture in my mind was that people would arrive and shove a tube down my baby's throat and take her away. when the doctor and nurse for transport arrived they wheeled in a monstrous looking contraption strapped on a stretcher. I cringed inwardly at its bulk and harsh appearance. Then the swivelled it around and in the midst of all that bulk and technology, there was a little nest for my baby girl with a sweet, pink, bunny rug. The doctor was sweet and funny with long dark hair and she joked around with the nurse who was tall with short curly hair and was equally sweet and funny. I left the room while Kaylee was being intubated. Some twins down the hall bellowed their displeasure and I wished fervently that my daughter could be that loud. After an age I could go back in to see Kaylee and I saw something that meant more to me than words can express. The doctor, Katherine, had wiped Kaylee's eyes. In amidst all the urgent medical stuff, she had taken time to make Kaylee comfortable. As I sat there she fiddled with Kaylee's long, thick hair and crooned to her lovingly and within me I felt something relax. I chose to trust her with my baby.
I have since talked to Katherine about this and tried to convey to me how much that small act of wiping Kaylee's eyes meant to me. I don't think I fully did - I am not sure it is possible to.
Jon arrived just as we were transferring Kaylee over into her little pink nest and we both said goodbye. They wheeled her out and onto the lift. We got downstairs a few minutes later in time to watch the stretcher load into the back of the ambulance. The image of Kaylee - tiny, naked, frail and intubated - laying in her little warm, pink nest in the middle of all that equipment being loaded onto the ambulance against an inky black backdrop of night sky will forever be etched into my mind. As they closed the door and drove away we got into the car and sat for a moment. We held hands. We prayed. And then we drove home.
Showing posts with label PICU. Show all posts
Showing posts with label PICU. Show all posts
Sunday, December 18, 2011
Wednesday, December 07, 2011
Etiquette
Some people have told me that they find it hard to know what to say when they meet the parents of a special needs/medically fragile kid. I can't speak for all in this situation but I thought I'd put together a few do's and don'ts.
Do...
...notice and comment on something other than obvious 'defects' or medical paraphernalia. As a mother of a child with a tube taped to her face, I love it when people notice her eye lashes, hair and cute clips and clothes before her other differences.
...feel free to ask respectful questions about Kaylee's differences or medical bits and bobs. I do understand people's curiosity and I want people to understand Kaylee better.
...just say hi and chat! About the weather, any of my six kids, the price of cheese - whatever! Kaylee's differences do not define us or occupy our every waking moment.
Don't say...
..."Wow, she gets her food through a pump? It must be great not having to feed her all the time, you must get lots of sleep." Um. No.
..."Oh, at least you have five other normal kids." Kaylee wasn't the booby prize at the end and it is a stretch to call anyone in my family normal.
..."You are an amazing, brave, wonderful, inspiring person. I could never do what you do." I am just a Mum doing what many other Mums in this situation do. I realise this is intended as a complement but it does make me feel a little like a fraud and a bit uncomfortable. Other Mums of special needs and medically fragile kids have said they feel the same to me.
..."Oh, I know exactly what you're going through. My kid was born a few weeks prem and was tube fed at the hospital/was in PICU for a week with an infection/broke an arm and needed surgery/insert other scenario here." Anyone who has experienced this world knows you can only imagine what other parents in this situation are going through.
..."Kids with syndromes are always lovely." This is kind of like saying all fat people are jolly, all short people are insecure and all dark skinned people are musical. It's called stereotyping. Kaylee will have days where she is lovely and days when she is a right royal pain in the butt - just like my other five!
..."So are you going to have any more kids?" Right now I am not making any life long decisions, I'm just living day to day. I am also trying to fit 36 hours worth of work into every 24 hours (the only reason I am writing this is because I can type while expressing or calming a grumpy baby) so another baby is definitely not priority right now. It's really not a decision that I choose to share with the world at large anyway which is why I usually answer with wisecracks.
While all the don'ts are taken from real life, I do realise that the people who make those comments are genuinely trying to be nice! I always try and look to the sentiment BEHIND a comment, even if the comment itself is less than appropriate.
Things said with love, compassion and friendship are usually welcomed with open arms.
Do...
...notice and comment on something other than obvious 'defects' or medical paraphernalia. As a mother of a child with a tube taped to her face, I love it when people notice her eye lashes, hair and cute clips and clothes before her other differences.
...feel free to ask respectful questions about Kaylee's differences or medical bits and bobs. I do understand people's curiosity and I want people to understand Kaylee better.
...just say hi and chat! About the weather, any of my six kids, the price of cheese - whatever! Kaylee's differences do not define us or occupy our every waking moment.
Don't say...
..."Wow, she gets her food through a pump? It must be great not having to feed her all the time, you must get lots of sleep." Um. No.
..."Oh, at least you have five other normal kids." Kaylee wasn't the booby prize at the end and it is a stretch to call anyone in my family normal.
..."You are an amazing, brave, wonderful, inspiring person. I could never do what you do." I am just a Mum doing what many other Mums in this situation do. I realise this is intended as a complement but it does make me feel a little like a fraud and a bit uncomfortable. Other Mums of special needs and medically fragile kids have said they feel the same to me.
..."Oh, I know exactly what you're going through. My kid was born a few weeks prem and was tube fed at the hospital/was in PICU for a week with an infection/broke an arm and needed surgery/insert other scenario here." Anyone who has experienced this world knows you can only imagine what other parents in this situation are going through.
..."Kids with syndromes are always lovely." This is kind of like saying all fat people are jolly, all short people are insecure and all dark skinned people are musical. It's called stereotyping. Kaylee will have days where she is lovely and days when she is a right royal pain in the butt - just like my other five!
..."So are you going to have any more kids?" Right now I am not making any life long decisions, I'm just living day to day. I am also trying to fit 36 hours worth of work into every 24 hours (the only reason I am writing this is because I can type while expressing or calming a grumpy baby) so another baby is definitely not priority right now. It's really not a decision that I choose to share with the world at large anyway which is why I usually answer with wisecracks.
While all the don'ts are taken from real life, I do realise that the people who make those comments are genuinely trying to be nice! I always try and look to the sentiment BEHIND a comment, even if the comment itself is less than appropriate.
Things said with love, compassion and friendship are usually welcomed with open arms.
Wednesday, November 23, 2011
Top Ten For PICU
I know there are a couple of readers who are facing the PICU experience in the near future so I thought I would share what has helped me. Here are the top ten items I will be taking with me for my next PICU experience:
1. My Hospital Bible. When Kaylee was in hospital I would read two psalms, a chapter of Proverbs, Matthew chapter 6, John chapter 14 and Romans chapter 8 every day (I still do most days!) and it carried me through. There are all sorts of underlinings and comments in the margins of that Bible.
2. My breast pump. I have a small, portable electric breast pump that I bought from Nursing Angel. Being able to use it anywhere is a big bonus as I didn't always want to use the expressing rooms and seeing as Kaylee is now permanently hosting a colony of antibiotic resistant bacteria thanks to one of her hospital grade infections I can't use a hospital pump at her bedside or anywhere else where she has her nappy changed. Being able to pump in my room just before I sleep and just after I wake up also makes life easier.
3. My MP3 player. Being able to listen to music such as Josh Garrels was a huge lift to me. Especially on days when I had loud room mates to contend with or I just needed to zone.
4. My netbook. Writing is my therapy and being able to plug in to the internet for research and communication with a wireless broadband stick (I bought mine from Family Resources at the hospital and paid much less than retail) was a great boon.
5. My mobile phone. I hate mobile phones and didn't own one until the night before I flew out with Kaylee for the first time. I still hate them, but I recognise they have their uses.
6. My drink bottle. It is hard to remember to eat, drink and sleep in this situation. Having my drink bottle with me meant it took slightly less effort to stay hydrated than it would otherwise be.
7. A go-to guy. I think it is vital to have someone to be your contact with the outside world. Bek played that part for me during that first Melbourne stay and it was invaluable. People will be curious and want to help, I think it is necessary for ones own sanity to have a central point for everyone to get their information from to prevent the phone ringing non-stop. It is also helpful to have someone close by to act as gopher to go and get anything you need.
8. Comfortable and presentable clothing. Lots of sitting, lots of strangers, not a lot of time to choose outfits or do laundry!
10. My leather journal. I use it for journaling but mostly for writing down things like the nurses name, things I want to research
If you are a reader who has a friend or family member going through the PICU experience the things that helped me most were the fruit basket I got sent, some home made soup, SMS and email messages of encouragement (often I had the phone off when I was with Kaylee and when I was away the phone ringing would make my heart stop a little) and practical offers of help directed to my go-to person.
Hopefully there is something that will help someone else going through the experience to make the trip a little smoother.
1. My Hospital Bible. When Kaylee was in hospital I would read two psalms, a chapter of Proverbs, Matthew chapter 6, John chapter 14 and Romans chapter 8 every day (I still do most days!) and it carried me through. There are all sorts of underlinings and comments in the margins of that Bible.
2. My breast pump. I have a small, portable electric breast pump that I bought from Nursing Angel. Being able to use it anywhere is a big bonus as I didn't always want to use the expressing rooms and seeing as Kaylee is now permanently hosting a colony of antibiotic resistant bacteria thanks to one of her hospital grade infections I can't use a hospital pump at her bedside or anywhere else where she has her nappy changed. Being able to pump in my room just before I sleep and just after I wake up also makes life easier.
3. My MP3 player. Being able to listen to music such as Josh Garrels was a huge lift to me. Especially on days when I had loud room mates to contend with or I just needed to zone.
4. My netbook. Writing is my therapy and being able to plug in to the internet for research and communication with a wireless broadband stick (I bought mine from Family Resources at the hospital and paid much less than retail) was a great boon.
5. My mobile phone. I hate mobile phones and didn't own one until the night before I flew out with Kaylee for the first time. I still hate them, but I recognise they have their uses.
6. My drink bottle. It is hard to remember to eat, drink and sleep in this situation. Having my drink bottle with me meant it took slightly less effort to stay hydrated than it would otherwise be.
7. A go-to guy. I think it is vital to have someone to be your contact with the outside world. Bek played that part for me during that first Melbourne stay and it was invaluable. People will be curious and want to help, I think it is necessary for ones own sanity to have a central point for everyone to get their information from to prevent the phone ringing non-stop. It is also helpful to have someone close by to act as gopher to go and get anything you need.
8. Comfortable and presentable clothing. Lots of sitting, lots of strangers, not a lot of time to choose outfits or do laundry!
10. My leather journal. I use it for journaling but mostly for writing down things like the nurses name, things I want to research
If you are a reader who has a friend or family member going through the PICU experience the things that helped me most were the fruit basket I got sent, some home made soup, SMS and email messages of encouragement (often I had the phone off when I was with Kaylee and when I was away the phone ringing would make my heart stop a little) and practical offers of help directed to my go-to person.
Hopefully there is something that will help someone else going through the experience to make the trip a little smoother.
Monday, November 14, 2011
My Arms Are Tired
A poem I wrote while Kaylee was in hospital.
My arms are tired
from holding on to you
It's been seven and a half weeks now
since you were born
since I have slept in my own bed
since I have eaten a meal with your brothers and sisters
around our table
since I have scolded them to pick up their toys
or finish their dinner.
or tucked them in with bedtime stories and prayers
For seven and a half weeks
I have slept in strange beds
on couches
and on chairs next to your warmer
the beeps and bleeps of monitors
weaving through my dreams
I have seen a world I never knew existed
and though you hardly way a thing,
my etherialy beautiful daughter,
my arms are tired
from holding you
I am pressed in at every side
by the pained souls of others
as we watch our children
struggle and fight for life
I have prayed until my voice was just
a solid lump in my throat,
I have sung with my voice cracked
my hand touching your hair
wondering if you could hear me
I have tried to breathe for you
just to keep you going.
My arms are tired
from holding you
and though my arms are tired
and my heart is breaking
and my soul has shattered
into a thousand shards
and the world is now viewed through
the prism of my tears
I have never felt stronger
and the world has never looked
so beautiful
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
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.
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.
Tuesday, September 20, 2011
Well here I am at the somewhat more human hour of 11pm. I am eating some delicious pasta bake which was dropped off by one of my friends I haddn't met yet. Some ladies from my homeschooling forum (http://aussiehomeschool.com/) have rallied around to make sure I stay fed on decent food and have many other comforts small and large. Sisters in the faith looking out for me even though they only know me through the words I write. I am amazed and humbled.
Today was another full day. More specialists. More people on my team. All of them delightful or witty or wise or knowledgeable or gentle or kind or (in many cases) all of the above. I am so blessed to be here with such an extraordinary staff of people. I am such a user at the moment. I meet people and it's "Hi, how are you? Nice to meet you. How can you help my baby? How can you help me help my baby?"
Miss Kaylee Grace was a gem today. She slept for a large portion of the day. She had a go at trying to latch and feed twice and I was SO proud of her. It will be a journey that takes months for her but I have great hope that our feeding relationship will be a good one, even if it does always include an NG tube. She had a good top to toe wash and a new outfit. We have discovered that a few drops of EBM on her dummy (pacifier for my American based reader - Hi Analene!! Love you, will write to you soon as I can) makes for a happy Kaylee. There were no extraordinary set backs and there were little creeps forward.
I rolled up my sleeves today. I washed my baby and changed her nappies. I settled her when I was there for grumpy moments. I picked the brains of specialists etc. I arranged to start to learn about Kaylee's feeding tube - including how to put it back in if it is pulled out. I am scared witless of some of these things, but I am of the opinion that courage is when you are scared witless and you do it anyway. And after watching what Kaylee had gone through, what can I do but be courageous for her? I also went out to lunch with my lovely big brother. It felt selfish to leave the hospital without her but I know taking moments to decompress means I can be there for her when she needs me. Burning myself out trying to work the 24 hour shift, trying to do everyone else's job, would mean that in the moments that she actually needs me, I wouldn't be there for her. And that, to me, is unacceptable.
Kaylee has made the world a better place.
Because of her, when I go outside the air is sweeter. Colours are brighter. Good food tastes incredible and music is more beautiful. This has happened with the birth of each of my children however it is even stronger with Kaylee. I have a lower tolerance for some things - like wasting time, tantrums in adults who know better and ingratitude. However, I have more compassion for others, especially the mothers I see on my ward.
My food is finished and my eyes keep closing.
Here is to another good-news-day.
Today was another full day. More specialists. More people on my team. All of them delightful or witty or wise or knowledgeable or gentle or kind or (in many cases) all of the above. I am so blessed to be here with such an extraordinary staff of people. I am such a user at the moment. I meet people and it's "Hi, how are you? Nice to meet you. How can you help my baby? How can you help me help my baby?"
Miss Kaylee Grace was a gem today. She slept for a large portion of the day. She had a go at trying to latch and feed twice and I was SO proud of her. It will be a journey that takes months for her but I have great hope that our feeding relationship will be a good one, even if it does always include an NG tube. She had a good top to toe wash and a new outfit. We have discovered that a few drops of EBM on her dummy (pacifier for my American based reader - Hi Analene!! Love you, will write to you soon as I can) makes for a happy Kaylee. There were no extraordinary set backs and there were little creeps forward.
I rolled up my sleeves today. I washed my baby and changed her nappies. I settled her when I was there for grumpy moments. I picked the brains of specialists etc. I arranged to start to learn about Kaylee's feeding tube - including how to put it back in if it is pulled out. I am scared witless of some of these things, but I am of the opinion that courage is when you are scared witless and you do it anyway. And after watching what Kaylee had gone through, what can I do but be courageous for her? I also went out to lunch with my lovely big brother. It felt selfish to leave the hospital without her but I know taking moments to decompress means I can be there for her when she needs me. Burning myself out trying to work the 24 hour shift, trying to do everyone else's job, would mean that in the moments that she actually needs me, I wouldn't be there for her. And that, to me, is unacceptable.
Kaylee has made the world a better place.
Because of her, when I go outside the air is sweeter. Colours are brighter. Good food tastes incredible and music is more beautiful. This has happened with the birth of each of my children however it is even stronger with Kaylee. I have a lower tolerance for some things - like wasting time, tantrums in adults who know better and ingratitude. However, I have more compassion for others, especially the mothers I see on my ward.
My food is finished and my eyes keep closing.
Here is to another good-news-day.
Monday, September 19, 2011
A full day
It has been a full and busy day.
We start around 6am with breakfast, expressing and catching up with the night staff before they go. Then we plunge full on into specialists, tests, coordinating future support, learning about the various issues that Kaylee faces, having some time skin to skin, keeping in touch with Jon and support people, trying to remember to eat. I feel like I am running most of the time. I had a moment to sit out in the garden with Bek as we planned various support things and it was heaven. But then we were back into it. As it was, I missed the speech pathologist and didn't get time to give Kaylee her first bath.
It will be at least two weeks before we head back to Launceston. We will not be going home until Kaylee goes from continuous feeds to 3 hourly feeds - which she is not tolerating at the moment (silently vomits larger feeds then chokes) so we are working on a plan for that. I am starting to learn about tube feeding as Kaylee will probably still be tube fed at home. I take moments to write to my children and put photos up on facebook so they can see what is happening. I express and express and express.
Then in the evening, when the elevator crush has thinned and the bustle of the ward has slowed I take my daughter out for a cuddle. She starts rooting around looking for a feed. I offer her the breast and she spent TWENTY MINUTES having a go at latching savouring drops of magic milk and snuggling. I asked my nurse if I could take some now obsolete sticky stuff off her face and did. I changed her nappy and then we removed the drip in her foot. I took photo after photo. I wrapped her all by myself. I put her booties on. I felt like a "normal" Mum for a moment.
So at 1am I am updating you because although the day was full with many things, those are the moments that make it worth while. Gold with diamonds
We start around 6am with breakfast, expressing and catching up with the night staff before they go. Then we plunge full on into specialists, tests, coordinating future support, learning about the various issues that Kaylee faces, having some time skin to skin, keeping in touch with Jon and support people, trying to remember to eat. I feel like I am running most of the time. I had a moment to sit out in the garden with Bek as we planned various support things and it was heaven. But then we were back into it. As it was, I missed the speech pathologist and didn't get time to give Kaylee her first bath.
It will be at least two weeks before we head back to Launceston. We will not be going home until Kaylee goes from continuous feeds to 3 hourly feeds - which she is not tolerating at the moment (silently vomits larger feeds then chokes) so we are working on a plan for that. I am starting to learn about tube feeding as Kaylee will probably still be tube fed at home. I take moments to write to my children and put photos up on facebook so they can see what is happening. I express and express and express.
Then in the evening, when the elevator crush has thinned and the bustle of the ward has slowed I take my daughter out for a cuddle. She starts rooting around looking for a feed. I offer her the breast and she spent TWENTY MINUTES having a go at latching savouring drops of magic milk and snuggling. I asked my nurse if I could take some now obsolete sticky stuff off her face and did. I changed her nappy and then we removed the drip in her foot. I took photo after photo. I wrapped her all by myself. I put her booties on. I felt like a "normal" Mum for a moment.
So at 1am I am updating you because although the day was full with many things, those are the moments that make it worth while. Gold with diamonds
Sunday, September 18, 2011
People keep telling me I'm strong. I am not. Where some people may use their faith as a crutch mine at the moment is being used more as a wheel chair - no, stretcher.
I have cried oceans of tears. I have screamed in frustration. I have crumbled in surrender. I have wanted to vomit because my body was rejecting what was going on around me so forcefully. When I got on the plane to fly over here there was a little screen in front of me showing the news. There was something on there about the 9-11 memorial parades being cancelled. I stared in disbelief. How could anyone care about that? In the scheme of things what did it matter? My baby is sick, get out of my face. I have been angry beyond belief. Angry at what my baby has suffered. Angry at what it takes away from the other children. Angry at what Jon and I have had to go through. Angry and resentful of the separation and what I am missing at home. Andrew will likely have more teeth and may even be walking before I see him next. I have felt lost, like nobody's mother. In a limbo of motherhood. I can't tend my babies at home, I am so limited with what I can do with this one there are moments when I feel like a musical moo cow - singing and dispensing milk - with no reassurance she can hear me singing. With all my other babies they would cry and I would feed them. The crying would stop and I would settle them into my arms. There would be moments where we would sit and gaze at each other, learning each other's face. With Kaylee I deliver my milk downstairs then it is shipped up to her in measured doses which are then drip fed through her NG tube. If she is upset, I can re-wrap her and change her nappy and pat her, but there is no peaceful moment post-latch where all you can hear is contented gulping and most of the time I only pick her up two or three times a day at the most. Most of the time, there is no warm weight in my arms. Kaylee's eyes have only opened a few times and never focused on anything, not even a bit. While I try not to borrow worry from tomorrow, the fears of today are enough to scare the snot out of me. What we face is epic in nature and I do not feel strong. If I praise, it is something that breaks from within me - a sacrifice of praise. This makes me HATE sin with the fire of ten thousand suns. I have held other mothers around me as they shook with the same fear I feel - and I am not a hugger. I have stood shaking in helpless disbelief as my baby struggled for breath or underwent yet another procedure. I have sagged in grief and defeat over small things - like not being able to put clothes and booties on my baby because of all the things she is hooked up to. I grieve strongly the loss of our dreams. We had so looked forward to bringing this baby home and introducing her to our family and our community. While this will still happen, it will likely involve delay, questions about her health and her development (many of which we will not have the answers to) and fear - for someone sneezing on your baby is a bad thing but someone sneezing on your baby who has an unrepaired heart defect...
So I am not strong.
I am carried.
I have cried oceans of tears. I have screamed in frustration. I have crumbled in surrender. I have wanted to vomit because my body was rejecting what was going on around me so forcefully. When I got on the plane to fly over here there was a little screen in front of me showing the news. There was something on there about the 9-11 memorial parades being cancelled. I stared in disbelief. How could anyone care about that? In the scheme of things what did it matter? My baby is sick, get out of my face. I have been angry beyond belief. Angry at what my baby has suffered. Angry at what it takes away from the other children. Angry at what Jon and I have had to go through. Angry and resentful of the separation and what I am missing at home. Andrew will likely have more teeth and may even be walking before I see him next. I have felt lost, like nobody's mother. In a limbo of motherhood. I can't tend my babies at home, I am so limited with what I can do with this one there are moments when I feel like a musical moo cow - singing and dispensing milk - with no reassurance she can hear me singing. With all my other babies they would cry and I would feed them. The crying would stop and I would settle them into my arms. There would be moments where we would sit and gaze at each other, learning each other's face. With Kaylee I deliver my milk downstairs then it is shipped up to her in measured doses which are then drip fed through her NG tube. If she is upset, I can re-wrap her and change her nappy and pat her, but there is no peaceful moment post-latch where all you can hear is contented gulping and most of the time I only pick her up two or three times a day at the most. Most of the time, there is no warm weight in my arms. Kaylee's eyes have only opened a few times and never focused on anything, not even a bit. While I try not to borrow worry from tomorrow, the fears of today are enough to scare the snot out of me. What we face is epic in nature and I do not feel strong. If I praise, it is something that breaks from within me - a sacrifice of praise. This makes me HATE sin with the fire of ten thousand suns. I have held other mothers around me as they shook with the same fear I feel - and I am not a hugger. I have stood shaking in helpless disbelief as my baby struggled for breath or underwent yet another procedure. I have sagged in grief and defeat over small things - like not being able to put clothes and booties on my baby because of all the things she is hooked up to. I grieve strongly the loss of our dreams. We had so looked forward to bringing this baby home and introducing her to our family and our community. While this will still happen, it will likely involve delay, questions about her health and her development (many of which we will not have the answers to) and fear - for someone sneezing on your baby is a bad thing but someone sneezing on your baby who has an unrepaired heart defect...
So I am not strong.
I am carried.
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