Friday, September 30, 2011

A BIG step closer to home

Today, it was strange driving through the round about where we turned off to the airport three weeks ago. Three weeks ago, the sun had not yet risen and I was babbling at Jon to help keep him awake. Both of us felt a raw hole in our chests where part of our hearts was ripped out and taken to Melbourne. But today, the sun was shining and we turned toward Launceston.

As we backed up to the hospital to unload there was a still frame in my mind of my sedated, intubated, naked baby being loaded into the back of an ambulance against an inky black backdrop of night as I prayed that she would live - at least until I got to Melbourne. It juxtaposed strongly with the pink, healthy baby in a vivid purple grow suit, squeaking her objections over her continuous feeds being cut for the trip and waving her arms around!

As we put her into the humidi-crib in the 2 bed room I remembered standing there, feeling hollow and shell shocked and thinking "I'd do anything to get her out of there". As we gently placed her in and I decorated with teddies and quilts it felt like a triumph to finally be back in there.

Today we are closer to home.

Today I will see all my children in the same room for the first time.

Today I will sleep in the same room as my baby for the first time

Today I will walk down a familiar street to buy shampoo at a familiar supermarket.

Today is a good day.

Thursday, September 29, 2011

Here us what I get to see every day....


Kaylee Grace forces us to notice the abundant blessings we have by slowing us down and making us look at the world closer and in a different way.

Kaylee Grace makes us see and celebrate every good thing about each other and helps us realise the strength of our family and each other.

Kaylee Grace makes colours brighter, sunshine warmer, air sweeter, chocolate tastier, life better.

Kaylee Grace makes me a better person.

Kaylee Grace causes us to have compassion for others who have sick children.

Kaylee Grace makes us grasp each moment together as a family and swear never to take it for granted again.

Kaylee Grace makes us realise how blessed we are with our family, friends and community.

Kaylee Grace causes strangers to show us kindness, compassion and overwhelming generosity.

Kaylee Grace makes us celebrate milestones we never even realised existed.

Kaylee Grace helps us see God in a whole new, wonderful way.

Kaylee Grace was made for us and we were made for her.

Kaylee Grace is a blessing and a picture of God's Grace to us.

Wednesday, September 28, 2011

Homeward bound again

Tomorrow they are putting a peripheral line in and taking Kaylee's central line out so that we can go to Launceston to finish the antibiotics. This is FANTASTIC news! Please pray that all goes well and we are able to head up on Friday as planned.

Another step closer to home!

Things are getting busier for me in some ways now that Kaylee is more well. I can be much more hands on in terms of her daily care. The faster I become proficient in caring for her daily needs and understanding the signs to watch out for with her, the faster we can go home. It is all dependent on how well she takes her feeds, how stable her heart condition is and how well I am able to cope with everything and the only one of those I can do anything about is my coping abilities so I am doing everything I can about that! Things will also be getting busy when we get back to Launceston as I arrange various early intervention stuff, set up paediatrician visits and visits with other various specialists to deal with Kaylee's various needs and try and help Jon set up the house for us to come home to.

One thing, trivial really, that has made me a little sad is the loss of Kaylee's special hair clips. I had a little white paper bag with some beautiful hand made hair clips with little strawberries, bows, flowers and various other things on them plus three that had lovely little flowers that were identical except for the colours (red, white and pink) for my three girls to wear matching. Unfortunately, I have managed to loose them somewhere between the hospital and Ronald McDonald house. These were very special to me because in the early days when Kaylee was not able to wear clothes due to the type of monitoring she needed putting clips in her hair was one thing that made me feel like the Mummy. I shall have to save up and buy some more down the track.

All is going well over all. I am exhausted but not quite so overwhelmed as I was.

I am praying that things go well and I am in Launceston for Christopher's fourth birthday!

Monday, September 26, 2011

Kaylee's Diagnosis

Dear Friends,

Most of you have been curious about Kaylee's diagnosis. We have taken our time with letting everyone know the details in part because we needed to find out the details in the first place but also because we needed time to process this and come to terms with what it would mean for our family ourselves. We’d like to thank you for your patience and for allowing us the space to deal with this as a family.

Kaylee's Heart

The condition of Kaylee's heart is called Tetralogy of Fallot (TOF). It is caused by her chromosomes basically getting the recipe a little bit wrong and making her heart with a little hole between the two chambers at the top of the heart. This means Kaylees oxygenated blood (going away from her lungs to the rest of her body) mixes with her unoxygenated blood (that is going from her body to her lungs). While all heart conditions are tricky in little babies, the surgeons are confident that they will be able to fix this issue. It is one that they deal with fairly often. We are hoping to be able to leave the surgery until she is bigger and stronger, but it will depend entirely on Kaylee and how she reacts to her condition. This is MUCH better than the initial diagnosis of Kaylee's heart which was very grim and I am thankful for the expertise of the doctors here. It is not uncommon for this issue to not be picked up by scans and some babies with this condition do not have it detected until they are days, weeks even months old.

Kaylee's general differences

Kaylee has Cornelia De Lang Syndrome. Before I describe what that is I want to tell you a little bit about what a genetic or chromosomal "syndrome" is. If someone is diagnosed as having a certain syndrome it means that they have certain traits in common. Some may have many of those traits in an extreme way, others may have few in a mild way. It is almost like a buffet called "Cornelia De Lang" from which my daughter has been served certain traits. We do not yet know how many of these traits she has or will develop - it may be many years before we know that. We do not know what she will be capable of as she grows. The "text books" say that because her physical attributes are very distinctive, it is more likely that she will have some of the extreme symptoms or attributes of the syndrome, but as the geneticist says - none of those text books are about my daughter. This is an extreme case of wait and see.

Characteristics of Cornelia De Lang include:

low birth weight (usually, but not always, under 5 pounds) - so we DID have a big baby after all!

delayed growth and small stature

small head size

thin eyebrows which frequently meet at midline (her Uncle Aaron has been rocking the mono-brow for over thirty years now, Kaylee will make it work too)

long eyelashes

short upturned nose

thin, downturned lips.

excessive body hair (hence her nickname, Princess Hairy Legs)

small hands and feet

gastroesophageal reflux


heart defects

cleft palate

bowel abnormalities

feeding difficulties

developmental delay

Missing limbs or portions of limbs, usually fingers, hands or forearms

Intellectual impairment

Speech delay or absence of speech

Behavioural issues

Hearing difficulties

Vision impairment

Some of these characteristics she displays already - like her beautiful long eye lashes and delicate mono-brow, cleft palate and feeding difficulties. Others she definitely does NOT display – like missing limbs (never have I been so thankful to have a child with ten fingers and ten toes). Still other characteristics we will see if she develops as she gets older and work proactively to try and make sure we can support her in any way that we can to develop as independent and rich life as she can possibly manage. She has already enriched our lives in so many ways.

CDLS (Cornelia De Lang Syndrome) develops with no known cause in one in 10,000 births. As yet, it can not be detected in scans and to be honest, what difference does that make? Kaylee was created to be just the baby our family needs. Our grandchildren have no more chance of having CDLS of any other child unless Kaylee has children which is very unlikely as people with CDLS rarely have children of their own. Nothing we did caused Kaylee to have Cornelia De Lang Syndrome. The geneticist told me that it happens for "for no reason". I smiled and told her I believe it happened for a reason, but neither Jon nor I caused it.

We will be getting to know Kaylee for the rest of our lives. Already she has shown herself to be a tough cookie. She can go from blissed out to full diva tantrum and back again in three seconds or less. Much like one of her big sisters! Kaylee is not "one of those kids with a syndrome". She is Kaylee. Having a diagnosis will help us support and help her better, but it does not define her.

Just a quick update

Kaylee is doing well. We are managing her gastroesophageal reflux (tendency to get heartburn and chuck!) with thickened feeds and keeping her tilted upright. We are being reasonably successful with that. It has been discovered that Kaylee has a small cleft in her palate which will need repair sometime after her heart is repaired. It explains some of the issues that Kaylee has had with feeding and knowing about it means we can start managing it so while I am sad that Kaylee will now be having two surgeries before her first birthday, I am happy to know anything that means I can help her better. Kaylee passed her hearing test with flying colours which is great. We will have to keep a close eye on Kaylee's hearing as kids with cleft palates do tend to get fluid build up in their inner ear, but the fact that she is starting out with full hearing is great news. I am getting in place a great support team here in Tassie. We are blessed to live where the waiting lists for help are weeks long rather than months, or even years, like on the mainland. We are hoping to take Kaylee's central line out very soon and head up to Launceston.

Over and above all the health and special needs stuff Kaylee herself is starting to wake up and interact with the world! She is reaching that age where she will crack her eyes open and take a long hard look around. We spend quite some time staring at each other! She is content and peaceful most of the time and loves a snuggle with Mum. We are often found curled up together in an arm chair fast asleep in spite of all the lines and tubes. She makes her nurses lives a little bit boring with few diva tantrums but a whole lot brighter with pink and bows and cuteness. She has become a bit of a favourite I think.

I am doing well. The kids came down yesterday for the second time which is great. Health wise I am fit as a fiddle. It takes a great deal of self discipline to take a nap or go to bed before midnight but that is nothing new. It has been a few years since I willingly went to bed. While I do like sleep, I can always think of a million things I would rather be doing. The kids are thrilled with their new sister and now know all about her various machines etc. We play the "glad and sad" game where we think of one thing that we are glad of and one thing that makes us sad. This gives them a chance to talk about all the big and complex feelings that go along with what we are going through as a family. We are working hard to make sure that their needs are cared for as well as Kaylee's.

We are now looking toward a homecoming. We have no idea when that will be as it is entirely dependent on how Kaylee's feeding goes. Thankfully we have many people who are helping us work out the various logistics of running our home once we are all together again. Caring for Kaylee outside a hospital environment is becoming less scary as she gets bigger and stronger and I get more confident.

Thank you all for your prayers and words of encouragement.

We can't wait to be home!

Saturday, September 24, 2011

What is not my job

One day, someone will point at my daughter and call her retarded.

Someone will peek inside my sling and recoil when they see her feeding tube and ask questions about what's wrong with my baby.

We have been thrown into this exhausting and amazing world of children with special needs and have become ambassadors.

Every time people want to know about Kaylee's heart or her differences, I will again be explaining the crazy, heart-rending and unexpectedly delightful world of parenting a special needs child.

I have been "different" for a while now and I know what it is to be stopped in the street to be asked personal questions by strangers. Once you get to about child number four you'd be amazed how often strangers feel the need to comment on the health of your "lady parts" or your bedroom antics. I know what it is to have the same questions asked again and again.

I will be struggling to find words to describe the awesome feeling of when she attempted to feed for the first time and convey the fact that having Kaylee in our lives makes colours brighter, food tastier, music more beautiful, air sweeter and hugs warmer.

I will be attempting in some way to get people to understand that Kaylee is not a "blip" in our collection of healthy children. While the pain we have gone through in the last two weeks or so is huge, it is so worthwhile.

But the knife that turns in my heart, is that one day, someone will call my daughter retarded.

Heaven help me part of me prays that her mental capacity is limited enough that she doesn't notice but I have known enough kids with special needs to know that even the most profoundly disabled child reads the tone of voice and body language and feels the pain of the rejection, fear and judgement wrapped up in those words.

The thought of it creates a feeling in me that is very familiar.

I felt it when I walked into the cardio ward to see my favourite PICU doctor about to give my daughter a lumbar puncture.

I rage at my helplessness to protect Kaylee from the pain that this world holds for her.

I shake with anger that sin creates such hurt for my child.

And I am reminded.

About two and a half years ago we had run out of milk for breakfast so I gathered the children (Erin, Billy, Christopher, baby Anna in the ergo and a belly full of Andrew) and went accross the road to the shop to get some. On our way back Erin darted down the drive way and Billy and I went through the front gate, planning to jump out and yell boo at each other when we met. I thought Christopher was following Erin but he didn't jump out and say boo. He had disappeared. I ran out to the driveway and he wasn't there. He had followed the cat then looked up and, unable to find us, logically went back to the last place he remembered seeing us (even as a toddler, Christopher was smart and logical). The shop. Across the main road that was busy with tourist traffic, log trucks, milk tankers, trucks from the lime works down the road.... Panic filled me. I ran out to see him being ushered off the road by a woman as trucks thundered past. I babbled my thanks over and over to the woman and she said something strange. She said "We wouldn't have let anything happen to him." Unable to register anything I gathered my children and ushered them inside. I plonked everyone around the table and laid hands on my Christopher and praised and thanked God for his safety. I called a friend (Bek, my pit-crew cheif actually) and babbled the story to her.

Later that day God came and sat next to me. I told Him I didn't want to talk about it. I told him I felt afraid of what could have happened. That Christopher would have had to live the rest of his life with huge challenges and pain because of my inattentiveness. That my ineptitude as a mother could have cursed my child. That I could not protect him from everything.

And God said something to my heart.

He said

"Nothing will happen to your children that they and I can't handle together."

It turns out that I don't have to handle my children's pain. I don't have to make it all better. I don't have to protect them from all hurts. I don't have to avenge all wrongs. That is not my job and even if it was, it is not something I am equipped to do. My main task as a mother is to introduce them to someone who CAN do all those things and to help THEM develop a relationship with HIM.

Yes, it will hurt to watch her go through various medical procedures. There will be times when I need to leave the room so I don't tackle the doctors and nurses and beat the living snot out of them for hurting my baby. It will hurt when people judge, fear, shun, stare, point or treat Kaylee like a mistake. I may be forced to beat the living snot out of some of those people. But ultimately, Kaylee has a greater defender than me. He has carried me through the darkest moments of this experience and soared with me to the greatest heights and pleasures.

So Kaylee Grace, my sweet girl, meet your Heavenly Father.

He loves you even more than I do.

And that is a lot.

Thursday, September 22, 2011

closer to home

Another full and crazy day yesterday. There are times I feel like I am directing a big stage production. I was sad to say goodbye to my amazing team in Melbourne. It is sometimes scary taking the next step toward normalcy. Leaving behind the comfort of hourly obs by nurses who specialise in cardio affected babies, lactation consultants who work with NG tubes and syndrome affected babies and cardio affected babies every day, my pit crew chief and fabulous Melbourneites (move to Tassie people!), various support workers who are vivacious, funny, kind, wise, compassionate, knowledgeable or all of the above; friends with whom I have laughed and cried at all hours of the day and night as they helped me care for my baby. And my other friends into whose hands I pressed my contact details with promises that one day we would watch our babies play together while we drink coffee, not an alarm in ear-shot. I am not a crier, but tears welled up in my eyes as I wondered if their babies would make it that far.

But I am taking a step toward home.

It often takes me a little while to warm to a new nurse or doctor but I have found that if you treat them like a super star they often rise to the occasion. There are few people who work in the care of very sick babies who are completely without compassion and humanity. The staff here in Hobart do seem to be rising to the occasion and the doctor who transported Kaylee to Melbourne was on duty last night. She IS a super star!

For now I am in Ronald McDonald house which is lovely (and paid for by the government!) but in five days, depending on what goes on with other families in the house, I may need to find other accommodation. Please pray that I will either be able to stay here. I have a friend who lives close by but Ronald McDonald house does provide me with a breast pump and it is directly accross from the hospital. Plus it has a fantastic playroom for my children to use when they visit me.

I held my husband and children last night. I took them all in to see Kaylee in dribs and drabs. They each sat in the arm chair while I held her out to them to be touched, hugged and kissed with hardly any tubes or wires. Our time together last night was late, rushed and far too short but thanks to the generosity of friends willing to open their home, I got see my family today too. Spending time with the children was wonderful and painful. It reminds me of all that I am missing. It reminds me how forever changed we all are. Each time a child is added to our family, the relationships change. In adoption circles they refer to it as the family "constellation". The addition of another star to an astrological constellation causes all the other stars to change the way they relate to each other slightly due to shifts in gravitational forces. What we have been through in the last two weeks has caused all of us to change and shift. It is like there was a massive supernova in the middle of our family constellation. The children's lives have been forever changed. I am forever changed. I don't want to growl at them EVER again - but sometimes growling is my job. I am brittle in places I was previously strong and strong in places I was previously weak. The few moments I got to snatch with Jon resulted in tear stains on his shirt. I am amazed by him and his strength. We have discovered that we have been both listening to the same album since all this started. An album I downloaded for free by Josh Garrels. Track 3 has been speaking to both our hearts. It is our 11th anniversary tomorrow and it has shown to be 11 years well spent. He is my hero. We went to the Botanical Gardens and spent time together. Kaylee was constantly on all our hearts and I wished passionately that she was nestled in a sling against my chest as we wandered around and talked about the flowers. I am constantly torn.

Kaylee herself is doing well. Her breathing has been pretty good since we got here. She really only de-sats (looses oxygen saturation in her blood) when she is annoyed or upset. The typical Kaylee Princess act where she holds her breath until she gets what she wants - and frankly, at this point, I do whatever I can to get her whatever she wants, when she wants it! She has gastro-oesophageal reflux disease (GORD) which causes her occasional discomfort (bad heartburn, occasional vomiting) but she is in a bed that is tilted up, her magic milk has been thickened so it stays in her tummy better and she is taking medication to help - the same medication that her Daddy takes actually! She is still attempting to feed and doing lots of things with her mouth. My goal is to keep her interested in doing things orally so that when it comes time for her to eat solids, she won't be reluctant after having been tube fed for all of her life. Also I want her to use her mouth often to exercise the muscles she will use for talking and experience the closeness and cuddles of breastfeeding. Any nutrition she takes in orally is an added bonus. I wish I could physically be with Kaylee constantly like I was with all my other babies but at this point it simply isn't practical so we do the best we can. Milk volume is not an issue any more with me expressing 600-700mls per day - far more than Kaylee actually drinks. We are stockpiling in the freezer!

I am exhausted tonight and I miss my babies and my husband. But I am a step closer to home, and that is something.

Wednesday, September 21, 2011

Is leaving on a jet plane...

Flying out to Hobart this afternoon. Praise God!! Will probably head up to Launceston when Kaylee's antibiotics have finished (about two weeks). I will see my husband tonight.

Closer to home.

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 ( 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.

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

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.

Nothing Gold Can Stay

Yesterday was Gold. The whole day was Gold. We rested and took a deep breath. The magic milk flowed. I spoke to nobody new and no choices were demanded of me. I had long draughts of solitude - balm to my introverted spirit. Simply getting on the lift and not having to fight a crush made the day feel like it had more oxygen. Even so, I would not call it easy. You develop a kind of bond with a mother who you share this experience with. Sitting together, breast bared, in the expressing room. You are thrown into an intimacy of spirit with people whose name you can't quite remember but whose child's diagnosis you are fully conversant with due to those moments of late night expressing. So to shout for joy in the hallway seems so wrong when down the hall an alarm is going off or behind the curtain is a quiet sobbing or the red rimmed, downcast eyes silently beg you not to ask "how's he going today?". And every time she sighs, I hold my breath. Because in this world, nothing Gold can stay. Even if her condition continues to improve, tomorrow I will be plunged again into learning cardio care plans, trying to teach my girl to drink direct, learning how to hold her better, planning for the next step, working out how to deal with her needs once we are home, creating contacts and support back in Tassie. This is a marathon and yesterday was a moment when the sun was shining, the birds were singing and I could enjoy the run. Tomorrow my breath may come in fits and starts, my legs may burn and my eyes may sting where the sweat drips down.

Because in this world, nothing Gold can stay.

Nothing Gold Can Stay

Robert Frost
Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

Thank you friends for loving me like Jesus

Saturday, September 17, 2011

a gold morning

Dear friends,

I found something I didn't know existed....a quiet morning on cardio. I slept well last night only waking to express and occasionally panic and look at my clock or start at imaginary alarms! I expressed even more milk than previously overnight. In the morning I was determined to just chill with my girl. After a chat I put my feet up and cruised online, sorting out the support pages on here, researching, facebooking. Just cruising. Not one alarm went off on Kaylee's monitors. I expressed and had a nap. I am expressing once again before I go back in. It was bliss.

I do not expect this afternoon to be as easy. We will be cleaning up where her central line went in now it has had a chance to clot. Past experience has shown that when she gets tired out she forgets to breathe, so we will see how her afternoon goes.

But that morning, it was gold.

Friday, September 16, 2011

Central line day

Dear friends,

I am sitting on my bed eating a bowl of soup (thanks Anna) after along morning.

Yesterday Kaylee's central line placement got pushed back until this morning. I met with the anaesthesiologist at around 7am. Kaylee had a good night with a short period when she was unhappy with the world in the early morning but had settled again. The anaesthesiologist explained everything to me. He told me to settle in for a long day as he wasn't sure when they would have time, theatre space etc. I told him to take his time. If we have to wait then obviously we are not the most urgent case in the hospital and that is a good thing! I met with the day nurse then I went and expressed and took all my stockpiled milk down to the formula room as Kaylee was fasting. I came back up and prepared to sit and have a long cuddle and read to her when all of a sudden it was show time. So much for our long wait. We took her downstairs to get her ready. While we were standing around waiting Aaron, Kaylee's nurse, offered me a cuddle. I was about to say "Thanks, but we only just met and I'm not much of a hugger" when I realised he meant Kaylee. So I held her and sang to her and kissed her and called her all her special names (Tulip, Princess Hairy Legs, Kaylee Grace) and passed her over. I went upstairs opened my Bible to Matthew 6 - I know you shouldn't mess with scripture but I did change it from "do not worry for tomorrow" to "do not worry for five minutes from now" because tomorrow seems a long way away. I thought about Abraham offering Issacc. I thought about how Kaylee is God's baby. And I was OK. In some sort of surreal place, I was OK. I wrote my kids their emails and while there was a part of me that was wondering if this procedure would mean that I would have to tell them their sister wasn't coming home after all, I had a peace. I kept dozing off so I went back to the ward and sat in my chair with my feet up. I flipped open my netbook and set a slideshow of my kids going while I listened to music and laughed at the funny photos of my kids.

Then Aaron came in and told me that I could go down and see her in recovery. I ordered stand down and thanksgiving of my prayer warriors and went to check on my girl. She was highly annoyed and had blood smeared over her (Please Jesus, can I have a day when I don't see my daughter's blood?) and being highly annoyed messes with her breathing and heart rate so although it was fantastic to see her alive again, my head started to pound as I tried to settle her and the child in the bed next to us made a high pitched, keening wail and those bloody alarms kept going off. And I once again had to walk away.

I expressed and tidied up and gathered my bits and pieces knowing I would need to go and have some lunch and a rest. I went down stairs to see Kaylee resting quietly, the keening wail gone and no alarms going off. I kissed my Tulip then took her Magic Milk to be stored (we have a bit of a stockpile now after Kaylee fasting for procedures) and went up to my room to eat and decompress. I still have a voice shouting at me to RUN back to Kaylee's side. To not desert my daughter. But I need to decompress.

Cardio ward is not an easy place to sit. Alarms go off constantly and it is a concerted effort NOT to jump up and check Kaylee every time one goes off, even when it is down the hall. Us mothers wander around clutching our breast pump shields and mobile phones with a white fingered grip. If another parent meets your eyes you can smile and talk ("we got out of ICU today, yay, the comfy chairs!", "I spilt 30 ml of EBM last week. I cried for an hour"). If they don't meet your eyes or if you hear their child crying behind a closed curtain you leave them alone and whisper a prayer, feeling guilty that the prayer is as much thanksgiving that it is not your child.....this time.

Kaylee is stable, her (cardio) problems are simple compared to many of the children on this ward but she is 8 days old and has multiple issues and I have learned you cannot assume that because she is stable and happy now, the same can be said for five minutes time. Schooling myself to walk away, let others do for me, keep it together for her has been a huge learning curve. I think sometimes that it can't be as bad as it feels and try and step back to gain perspective. Then I quickly stop because it is actually worse than it feels.

I am being carried, thanks largely to your prayers.


Dearest friends

{written yesterday}

How’s the baby I hear you ask?

She is doing well. Her breathing was a bit slow at times this morning but nothing bad or dangerous. She still has nasal prongs but it is just puffing a bit of air into her nose to remind her to keep breathing. She had another Lumbar Puncture today which isn’t nice, but the outcome will determine how long she is on this massive dose of antibiotics. The central line got put back until tomorrow and I will be meeting with the anaesthetist at 7:30am. She will fast from about 4am which she hates. She quite likes getting her food constantly drip fed to her through the tube that goes through her nose into her belly. She prefers that to 3 hourly feeds that were being put through the tube. It got put back to drip feeding because a big feed was too much load on her heart and lungs and made her sleepy…and forgetful when it comes to breathing! I am getting more involved in her day-to-day care which is scary but good.

How am I?

A friend took me out shopping and for lunch today. In spite of the nail marks on the footpath where I had to be dragged out, it did me good. She caught me on a downward swing and it was a toss up which I needed more – shopping or a sleep – but after I came back, expressed and napped, felt so much better and expressed 100ml. I saw a quote weeks ago that I thought was funny at the time but it scares the crappers out of me now. It was “Whoever said ‘don’t cry over spilt milk’ never pumped 60ml then accidentally dumped it.” I think of it every time I am putting the lid on what I express! I live to express. There are three things I can do, I can touch, I can sing and talk and I can express. Woe betide ANYONE who messes with those. I was talking to another cardiac Mama and she agrees. We walk around with these stunned looks on our faces clutching our breast shields. The fact that I have peace with all this should not in any way be taken to mean I am OK with any of it. I AM NOT. There are not swear words invented to describe how awful and unfair this is. How unfair to Kaylee who has to endure all this. How unfair to me, to Jon and to the other children. NONE of this is OK. It makes me hate Sin all the more. Today was better than yesterday. I didn’t lock myself out of my room once. And right this minute the ground beneath my feet seems steady and solid. We won’t ask about five minutes ago, or how it will be in five minutes to come. To paraphrase a scripture – “Do not worry about what will happen in [five minutes time], [five minutes time] will take care of itself. Right now has enough worries” – I may have changed that one a little.
I need to go and express, cuddle my girl and read her a bedtime story;
I am a phoenix. I am just at the flaming and ashes stage. I will rise from this and I expect to burn and rise a thousand times in this adventure with my girl. I am determined to rise more beautiful each time – I will not waste this pain.

Thank you for your prayers.

Thursday, September 15, 2011

A Day

This is a sample of a day here. I write this not for sympathy or to throw a pity party but to help people understand what a mother in my situation faces in a day so that they will show the same love and compassion that you, my friends, have shown me.

6am - alarm goes off and I rejoice that I had something actually resembling sleep. I get up and force myself not to run pyjama clad through the hospital to Kaylee's side. I take my iron supplement, shower and tidy my room a bit quickly, knowing that I will have to move rooms today because Kaylee is six days old. I hope that my new room will have a working heater, hot water that takes less than ten minutes to come through and no hele pad outside the window. When I am all dressed I fill my bag with fruit and nuts, get my pumping gear and put it in the bag, add my journal/notebook/brain on paper, heat pack for helping let down when I am pumping, hook drink bottle on belt. I also grab my bag with my netbook and camera inside. I walk to the lifts and travel to the 7th floor. I force myself to go to the expressing room first where I sit for an hour expressing and reading my Bible and listening to uplifting music and worshiping. When I am finished I carefully wash and put away all my expressing gear, label my milk, gather my bits and pieces THEN I run to Kaylee's side. I check how she has gone in the night, chat to her a bit and touch and stroke her then sit down with my netbook to write e-mails to the other children.

sometime after 8am - My care manager Ali comes on duty and I talk through what plans are for the day. She is also a lactation consultant so I run through what I am doing with expressing and check for any tips she has to add. We get Kaylee out for some skin-to-skin contact. I sit with her and read her the Psalms that meant so much to me during my worship time.

At 9am I reluctantly put my baby back but feel awfully happy that I was able to stand up and put her down all by myself without getting tangled. They are about to take bloods (a heel prick style thing, Kaylee's heels are coverd in nicks due to repeated heel pricks for various tests) and while I feel like wrestling the person taking bloods to the floor and pumelling her to a pulp and screaming my frustration I turn and walk away to pump again, knowing that my job is to feed my baby. While I am pumping I talk on the phone to various support people about things that need to be done. I find out that a volunteer will be ready to help me change rooms when I am done. By the time I finish expressing, clean everything and put my milk away it is past ten. I find out that to get my key I need to go to the Ronald MacDonald house on the next block but thankfully the room will be within the hospital - praise God! I didn't fancy walking the streets on my own at 2am to bring Kaylee's milk to the ward. I get the key and chat a bit to the housing coordinator about our situation and how to deal with the key etc. Then I walk back to my old room and start packing up. The volunteer is a very nice lady who is probably in her 70's. She pushes a trolley full of stuff for me and I carry two bags but we still have to take another trip to get me all moved in. I am awfully thankful for my Pit Chief organising the help as I don't really have the brain power to find my room on my own right now!

11am I meet with the dietician about Kaylee. We discuss formula top up, types of formula, calorie supplementations and what we can do to help Kaylee grow strong quickly and I vow inwardly to work harder at getting enough milk for Kaylee so we only have to calorie supplement. I also talk to an occupational therepist about positioning Kaylee to best help her little body. We talk about preventing SIDS when Kaylee gets home and how I should best take care of her to prevent issues developing. We also talk about support for Kaylee's needs as she gets older (it is a relief to talk about her getting older) and about things like speech therepists, early intervention, timeline for diagnosis etc.

11:30 and I am late to express. I go and express and check in with support people, including my midwife back in Tassie, and call Jon to let him know our girl is going well.

12:30 I take Kaylee her milk. I stand and talk to her for a little and talk to the nurse. I say to the nurse that it feels like I am always walking away from Kaylee's side today. I go over to my room (ride the blue lifts to floor one, walk to the silver lifts, ride up to level 5, the lifts and hallways are often so full they feel like peek hour traffic.) and lay down to keep my feet from swelling anymore and eat something for lunch as I talk to a friend who may be taking me shopping for some clothes tomorrow.

1:30 back on the cardio ward expressing. I fall asleep expressing and am a little annoyed at the milk spilt on my top but rejoice that my body has moved on from "something resembling sleep" to ACTUAL sleep. When I am all cleaned up and Kaylee's milk is delivered I know I should go to bed but I can't bear to walk away again. Each step is like waxing my heart or one of those dog collars with the electric pulse going off. The nurse gives me an excuse to stay by telling me the lactation consultant will be in soon. I get out my netbook to finish writing to the other children and I fall asleep in the chair next to Kaylee's bed. When I wake up I find out the lactation consultant was on the wards but realise that I NEED to go to bed. I tell Kaylee's nurse then turn to walk away from my baby again.

3pm I lay down on my bed and set the timer for an hour and sleep blissfully!

4pm I wake up and go as fast as I can to express.

5pm I go in to take Kaylee's milk in to her. They have just finished attempting to put the long line in. I help clean the blood off Kaylee and talk to the doctor about what our next step is now that the long line didn't work. Kaylee is bundled into my arms and she is exhausted. I hold her and sing to her and comfort her as she sleeps in my arms. I am glad when she twitches in annoyance when the nurse has to change a sensor. I am relieved she still has enough energy and spunk to twitch. The nurse makes up a new bed, throwing the blood stained sheets in the wash. I wonder how much more blood is left in my baby.

I again force myself to put her down. I need to express again.

I meet the Mum of the baby in the next bed and her little daughter in the expressing room. It turns out that she is from Tassie too. They have been here for two months and will be here for at least another two.

I call Jon and let him know the plan about the central line and generally check in with him.

I go to McDonalds for tea and update my Blog and such. I talk to my big brother on the phone while I am doing that. I also start to organise some probiotic support to get lots of good bugs into me (and hopefully my milk) and treat Kaylee's nappy rash. I can't fix most of Kaylee's problems, but maybe I can do something about this one. I go up to my room and discover I have lost my key. I decide it is more important to express first so I head back. While I am expressing I talk to my other kids on the phone about their day and kiss them all goodnight. I also talk to Jon. When I have delivered Kaylee's milk I search for my key in both Kaylee's room and the expressing room. I go down and check that I haddn't dropped my key while I was eating tea and send three of my kid's e-mails (I talk to them at night and they read e-mails in the morning) but have to stop because my lap top is going flat. I realise my phone is too.
I head up to my room and use the phone outside the accomodation to ring around and find someone to let me in. I am trying to work out the logistics of how to deal with the lack of key and overnight expressing while I talk to Jon and I walk in to my room to find my key on my bag, thank you Lord! I continue talking to Jon and we briefly cover how we are going to prepare the kids for the fact that Kaylee will have special needs, what that means for our family, support available etc. The conversation is all too short but I know I have to sleep. We miss sleeping next to each other so much. Hanging up is hard. I unpack my stuff and tidy the bedroom. I can't find my phone charger. I call through to where my old room was and ask them to check for me. While I am waiting for them to call back I call Bek and let her know my phone may well be off overnight and tell her what my extention number is - it is midnight by this stage. They call back to say my charger and camera are at the ward clark's desk, I can get them in the morning.

I eat some porridge and take all my supplements to help my milk and munch on fruit from my fruit basket. I call the ward to let them know I found my key and see how Kaylee is doing. I thank Nadia for taking such good care of my baby and she replies that she is "Such a doll!" I tell her I will see her sometime before sunrise with some milk and she urges me to get some rest. I go and have a shower. After I have a shower I realise the key I had hung on the door handle so I wouldn't forget it is still hanging on the door handle. On the inside of the door. I call security to let me in again, standing in my t-shirt, underwear and towel. I promise them it will be the last time. I realise that I can't turn my phone off to conserve battery like I had planned, I need the alarm. I set the alarm for 4am so I can go and express again and finally lay down to sleep. It is 1am. I pray that I will have the energy to write two more emails before my children wake up.

"I lift my eyes unto the hills, where does my help come from? My help comes from the Lord, the maker of Heaven and earth." Psalm 121:1

Though He slay me, I will trust Him.

Thank you all so much for your words of encouragement, help, glimpses of normal (I love you Analene!) I am blessed beyond words. Here's to not having to change rooms and not locking myself out today.

Wednesday, September 14, 2011

An update

Dear friends,

I want to testify of God's love and compassion.

Yesterday was a day of ups and downs.

I held my baby skin to skin and she ATTEMPTED TO LATCH ON. Tears flowed people, tears flowed. I had almost got adjusted to the idea that we may never have a breastfeeding relationship that doesn't involve a pump - which is kind of like having a friendship that is only over e-mail, beautiful but different! This is GOOD news. And at this point it was simply more good news on top of the good news we had been getting since we got here. I think a part of my brain had fooled itself that given time I would walk into the room and she'd be completely better - "normal".

Then Kaylee's breathing went backwards. They did some tests for this including a lumbar puncture among other invasive proceedures. The day before yesterday was a HARD day adjusting to a new ward and sleep still alluded me so to walk in and be told this more than knocked the wind out of my sails. Especially as I was told this by my favourite PICU doctor, who also told me that Kaylee may end up back in PICU.

I want to hold my daughter through every painful proceedure and sing to her and the fact that I can't just kills me. I have been trying to be there for every moment that she stops breathing, every moment that she experiences pain, every moment that she is unsettled and at the moments she is peacefully resting, I want to sit in the chair next to her an watch her. But at this, I walked away. My legs were swollen to twice their size, I had run out of fresh underwear, I was shaking and crying, I had not slept more than ten hours since Kaylee was born total - and that was restless and broken, hardly sleep really. I was at my limit.

And this is where I testify of God's love.

I walked downstairs to where my Pit Crew Capitan was waiting - with a Bible and some clothes. I cried long and hard on her shoulder as she prayed over me. The Holy Spirit comforted me with scripture - Psalm 121. I prayed that the angels would sing over Kaylee seeing a I could not. The Holy Spirit reminded me of Zephaniah 3:14-20 - read it people it's good stuff. I cried and I talked, I talked and I cried. I drank coffee. I came to a realisation. Standing next to my daughter trying to feel as hurting as she does, DOES NOT HELP HER. It kills me to do it but I have to trust my medical team of fantastic doctors and nurses and WALK AWAY. This is new to me. I am ALWAYS the one to comfort my newborns, I change 95% of the nappies, I had to laugh when a friend confessed to me today that she is a control freak because she is one of my subjects - for I am the QUEEN of control freaks. I used to be involved in every moment of my children's lives and right now I am a completely different kind of mother. Changed overnight. It is strange getting my bearings in this new world and I know that I need to find my role and my groove soon so I don't burn out.

I went upstairs and changed my clothes then went down to Kaylee's room where she had settled quickly after the tests. Sitting next to her was the biggest fruit basket I have ever seen. Seriously people, you are TOO GOOD TO ME. The person who sent this too me I have never met in person, she is a fellow homeschooling Mum on an internet forum. She only knows me through the words I write yet God used her to give me exactly what I needed at the time.

So I have made a plan.

I am going to do the things I can do the best way I can.

I will hold Kaylee, I will sing to Kaylee, I will express milk 2-3 hourly through the day and 3-4 hourly through the night, I will read to Kaylee, I will love on Kaylee with all my heart.

And sometimes I will walk away.

I will eat, I will sleep, I will write.

I will cry on the shoulders of my angels with skin on.

I will breathe fresh air.

I will go against every fibre of my being to accept graciously the extraordinary
outpouring of generosity I am facing from friends, family and all my "Imaginary Friends" out there in the internet world.

I will not torture myself as I walk away with thoughts of "what if my daughter dies while I am laughing with a friend" because I know I have loved her best I can and will continue to love her best I can. And I will put on my own oxygen mask so I can be there for her.

So I slept a bit and expressed more than twice as much milk afterwards.

I munched a sweet pear and wrote.

I cry, I laugh, I talk to my other kids, I taste chocolate.

And I sit by Kaylee's bed and be her Mum.

Because that is all I can do.

And I will do it well

Thanks to God and thanks to you.

Later that night I spoke to my children on the phone and as I put down the phone was overwhelmed with gut wrenching grief.....and my pit crew chief knocked on the door, held me, gave me the things I had asked for, prayed over me, talked to me, laughed with me.

God is good.

I am like a tomato plant. Without His staking me up, I would be a jumbled mess on the
ground covered in rotten fruit. But He is holding me up.

Thankyou Lord.

Today I was better after something resembling sleep. I moved rooms but I had help to
do so. I had support on the end of my phone. I was better to myself and therefore was more able to be there for Kaylee. I fell asleep while expressing milk (I worked out I spend about nine hours a day doing this at the moment, trying to get enough for my tiny girl to help her grow into a not-so-tiny girl) and I fell asleep in the chair by her bed. I had a real, healing, hour long sleep and expressed more milk.

Sheila – my favourite PICU Dr. – came back to put a long line into Kaylee so we can give her some specific medicine over a longer period (test results for Meningitis and a culture growth came back inconclusive, so we need to treat for them just in case). I turned up just as her job was finished and did my job – cuddling and singing to my completely exhausted baby whose mouth fell open as she slept, causing me to realise she has my lips.

Unfortunately, they didn’t get a long line in. Her little blood vessals are just SO small. So tomorrow they will be taking her to surgery to put in a central line. I am going to do my job, make milk, cuddle, read, talk, sing and pray like crazy. I am going to ignore the bleeps and squeeks of the machines and let the medical staff do their thing without trying to control, direct or even understand their every movement.

Please pray.

Pray that the doctors will get a line in quickly and easily tomorrow.

Pray that the cardio team will have wisdom and discernment as they formulate a plan
for the care of Kaylee’s little, holey heart.

Pray that the nappy rash on her bottom (thrushy, thanks to the uber doses of antibiotics) will be cured.

Pray that my little girl keeps on breathing.

Give thanks for a day where Kaylee did not stop breathing once today (she is on Maximum dose caffeine, I see many a moccha in my girl’s future!)

Give thanks for an amazing support network that has sprung into action for me. My Pit Crew Chief literally gave me the shirt off her back last night – a very comfortable one with breastfeeding access.

Give thanks for McDonalds. The “food” sucks but the free WiFi is fantastic and I can access it 24 hours just by sitting outside the restaurant in the hospital

Give thanks for good friends visiting and offering help to Jon back in Tasmania.

Give thanks for mobile phones. I hate them, but I love that I am contactable at all times by the ward, my husband, my friends and the comments you leave on this blog. I can also call my support team.

Give thanks for His Word. Psalms 30-35 were for me this morning as I expressed.

Pray that I keep making super milk and make more of it for my girl.

Give thanks for the testimony that my little girl will have.

“Let her sleep, for when she wakes she will move mountains”- Midsummer Night’s Dream

Tuesday, September 13, 2011

Plan of action

As yet I am still totally unaware of how long I will be in Melbourne but suspect it is more like days than weeks - YAY!!

However, I do want to take advantage of all you lovely people who are offering me help. My problem is I would rather cuddle my baby and lactate than trawl through the offers of increadable and awesome help to find someone who can bring me what I need.


Bek is my pit crew chief in Melbourne - my Doc Hudson for the Cars fans out there.

If I want/need something I will call Bek. Bek will then find someone who can change my oil, fill my tank or give me new tires while I sit and bliss out with my baby. Isn't that FANTASTIC?!?!? I am amazingly blessed. Bek has been my friend for well over a decade and it is showing up as a decade well spent.


All you melbournites who have offered help. Bek's email is: shaneandbekah(at)hotmail(dot)com - obviously change the (at) to @ and the (dot) to .

Currently Bek is about to bring me a Bible and some fresh clothes. Specific needs/wants/whims include raspberry leaf tea (just plain please, not mixed with other herbs) an Avent dummy, brewer's yeast, flax oil, a bag for me to stash stuff in to take home on the plane when I go, nuts to munch on and a story book for me to read to my beautiful girl.

I am a user at the moment people, all you're likely to get back is a smile and a wave but know thanks is coming from the bottom of my heart. It is just that my total energy, attention and affection is on my little girl (who I just cuddled for over an hour *bliss*), my husband and my other kids.

God bless you all!

I want to testify of God's Love

I have been finding it hard to sleep.

Yesterday was LONG and HARD. It was good to get out of PICU and into Cardio but I had to learn and absorb a LOT and had no time for any sleep whatsoever. Not great when trying to establish a milk supply. By the time I got to bed I was crying with exhaustion and shaking from head to foot but it still took 3/4 hour to get to sleep. I awoke at 2am and decided to express. I found my favourite spot and set up, with my netbook open so I could read the e-mails the children sent to me - a treat I had not had time for as yet. While I was reading and expressing I was flooded with a warm love for them. I expressed 80ml. The previous milking session had only given 35 ml. The oxytocin produced in my body by feeling their love has made milk for our baby and helped me relax.

Be anxious in nothing, but in everything give thanks.

What a good God to give me such an amazing family.

Praise God.

Monday, September 12, 2011

About today

I will get back to the story of how we got here later but tonight I need to share quickly about today and go to bed.



Please ask that I get sleep - I am not finding that one easy. Hopefully now the adrenaline is wearing off and a few stresses are off/changed in nature I will start to sleep but I know I need to sleep which makes me stressed about sleeping and it all turns into a self-perpetuating mess!

Please ask that Kaylee continue to do well.

Please pray that the angels will sing "Jesus Loves Me" and "When He Cometh" to her when she is sad and I am not there. These are her songs and it kills me that I can't sing them to her each and every time she is upset.

The Cardio team are meeting tomorrow to discuss her case and form a care plan. Please pray that they have wisdom, discernment and compassion.

The genetics people will be discussing a diagnosis with me tomorrow. Please pray that I will be able to wrap my head around it.


We are in the cardio ward now and I finally have a comfortable chair next to her bed. One that I can fold out and sleep on if I need to. Thankyou Lord.

There is a plan of action with feeding Kaylee so I know how many mls I need to provide in order to prevent the need for sup. feeding. This gives me a sense of direction and something to organise, chart and move toward. I needed that.

Friends. The messages you leave here on this blog reach my phone instantly. I can't reply simply because most of the time I have no time! But they bring me great comfort. Rest assured those offers of practical help have been taken note off along with contact details etc. and when I have a moment in this whirlwind I will process that and see what people can do.

She opened her eyes and looked right at me. For the first time. My daughter has eyes and they focus (kind of) PRAISE GOD! I get awfully excited about each bit that I find that works.

Thankyou everyone. I am overwhelmed with love and the Goodness of Our Compassionate and Loving God. Anything good in me right now is because He is polishing me as His jewel - and a jewel is just a dead rock until the light hits it. His light is what you see if you see anything good in me right now. To Him be the Glory.

And Thank-you Lord for the Beautiful Kaylee Guest AKA Tulip AKA Princess Hairy Legs

Sunday, September 11, 2011

Our Journey to PICU - part 1

For those who don't know, I am currently at the Royal Children's Hospital in Melbourne with our newest daughter. The prognosis is looking unimaginably better than it first appeared but there is likely a long road ahead of us. What it looks like and where it leads is to God's Glory and so long as it involves being the mother of Kaylee Grace it is well worth any bumps on the road.

This my recollection of the story of our journey to Paediatrics Intensive Care Unit. I will finish it over the next few days and weeks as I am able.

Kaylee Grace Guest was born 10:15am 8/9/2011.

She was born at the Birth Centre, delivered by the same midwife who has delivered 5 of my children now and has become family to us. Jean, who has also attended two of my other births was also there and of course Jon was there too. In between contractions leading up to crowning I was singing "Jesus Loves Me" with the CD I had playing and Kaylee was greeted by her midwives and mother singing hymns (which sounds terribly hippy and crunchy, but it was the most natural and beautiful thing in the world!). Her birth was amazing and wonderful (and hard work! - but only 2.25 hours of it). She breathed well within a minute of birth and pinked up nicely. I will post her birth story one day (I did write it down in a writing Journal sent to me by a dear friend) but this is the story of what happened after that.

The first thing we noticed about Kaylee is that she was small. The second thing was that she was beautiful. And amazing. And wonderful. Amidst all that I noticed there are some differences in my precious girl. She has some hairy patches on her upper thighs, a mono-brow (a delicate and beautiful one, she pulls it off where many would fail), rolls of skin on the back of her neck, creases accross her palms, small hands and feet for her size, a horse and squeeky cry that you can hardly hear and a few other bits and bobs. She also has Anna's lips, tiny fingernails and a mop of curly hair - I just want to make it clear here that she is Kaylee - who has many wonderful, normal, unique, quirky, unusual and completely ordinary features all mixed in together. But it cannĂ³t be avoided that some of these features indicate there may be some "congenital abnormality". What that is, we don't know yet. What I do know is that she is my daughter.
The "Abnormal" features (which makes her sound like she if from X-men, need to get her a costume I think) were not focused on by any of us who noticed them and we simply enjoyed having Kaylee as Kaylee for a while. We had a few hours of cuddles, phoned everyone to let them know she was born, did all the "After a birth" stuff (weighing, cleaning me up etc.) had lunch and then wandered accross to the hospital so that Kaylee could get checked out.

The Peds Registrar examined her and decided to suction out a little bit of stuff from her mouth. This made Kaylee choke. Then turn blue. Panic, room filling with people, recussitation gear, Jon and I clinging together terrified and shaking and furious and praying as Anna watched over us and prayed silent prayers but Kaylee came good again after a bit of work and everything calmed down to a degree. The fuss bought in the Peds big wig Dr who checked Kaylee out and I changed Kaylee's first nappy grasping at some type of normalcy amid the chaos that had just happened. After a bit we were all sitting down again and had all taken a deep breath while I glowered at the poor Registrar who had suctioned Kaylee - we later made up and became friends but at the time I could have choked her. Dr Baylee - the big wig Dr - asked me what I had noticed about Kaylee. I gave a run down of the features I had noticed then added that I also noticed she is beautiful, my daughter and she is simply Kaylee - who we are getting to know. He nodded and in his quiet and slow way informed me that he felt that she needed close monitoring and thought she needed to be admitted. Immediately I asked if I could be rooming in with her and was told that she would probably need closer monitoring than that. I reeled a bit at that but nodded consent as I absorbed the information. The next few minutes were a bit of a blur but I do remember Robyn, the nurse who had arrived amid the earlier panic, stepping forward and suggesting that Kaylee be put into a cot in a room where I could sleep on the fold out bed next to her. I could have kissed her. Kaylee was bundled into our arms and Jon and I sat together with her alone and cried, held each other, held her, prayed wordless prayers and reeled for a few moments.

We all went into the neonatal ward and Kaylee was put into a box cot, I was introduced to Daniel who would be our nurse and various arrangements started being made. Jon and I were organising the care of the other children until he could get home, sorting out my stuff that I would need and all the logistical issues, the nursing staff were sorting out Kaylee, the doctors were sorting out what they needed to and there was a general blur of activity. Everyone was kind and compassionate. I can't remember why Kaylee was taken into the ICU unit at first - perhaps to do some tests or put in a drip or prepare for X-rays or something - but she stopped breathing again. She did not need intensive resuscitation but it became clear that she would need to stay in the ICU with her own personal attendant and various monitors. Thankfully, I could stay on the fold out chair down the hall so there was no locked door between my baby and I for our first night.

That first night it felt like every time I left the room something new happened or there was some new bit of information to process or something else I needed to do. I had to keep reminding myself to sit down, drink water, try and express a bit of clostrum (I was only getting tiny drips which I would rub on Kaylee's lips). I sang to her, especially when her oxygen levels started to drop. She would pick up a bit when I sang Jesus Loves Me. One minute I would be composed and the next I would have tears running down my face as I sang to her. But whatever it was I just kept praying and singing. The nurses (who I got to know very well while we were there) would quietly explain everything to me. The doctors were gentle and kind and the Registrar won me over totally when she got a drip into Kaylee first go (not easy in a 5 pound 4 baby who has abnormally small hands and feet!). And they kept attaching machine after machine. By the time I went to bed that night Kaylee had a breathing contraption on which made her look like she was about to go snorkeling to inflate her lungs out. I finally forced myself to go to bed.

I woke up about 3am and could not sleep so I got up and tried to express again. On going back to bed I sobbed so hard the muscles in my abdomen cramped up so I got up and sat by Kaylee with my writing journal sent to me by a friend in America. Writing Kaylee's bith story into it made me feel like my friend from America – who I only know online - was holding me and praying for me. I wrote for about four hours as I watched over my precious girl, singing to her every time her oxygen levels dipped or she started to try and cry.

I went out to get some breakfast in the maternity unit. I struggled with a cereal box and made it explode cereal everywhere but managed to sort myself out some food. I smiled at all the babies in there which were so small compared to my previous babies and so big compared to Kaylee. I struck up a conversation with one lovely, particularly shell-shocked looking new Mum. She told me her baby had been overdue and I could tell by her waddle and the reeling look in her eye that the birth had not been easy. She looked so young and I just wanted to hold her and tell her she'd be OK! I was wistful when I heard other babies cry, wishing mine could cry like that.
I went back in and tried to get some sleep. I probably slept for about an hour and a half before getting up and going to sit in next to Kaylee during "Grand Rounds" where Kaylee was presented to all the doctors. Anna came in and we talked and she checked me over and reminded me of all the things I need to do to take care of me (at this point I kept forgetting I had given birth less than 24 hours before). Various tests, x-rays, ultra-sounds, drugs. Phone calls home to my kids, to Jon. Through the course of the day it became clear that Kaylee would have to go to Launceston or Hobart. The inital diagnosis on her heart was making it look like Melbourne - potentially for weeks or months. Logistics, drugs, explaining, reeling, tears running down face, expressing, telling myself to drink and go to the toilet and shower.

To be continued...part 2