Heavy Weight

We’ve made it, and passed it! 

We have reached the 1.5kg milestone and smashed it…weighing in at 1.78kg.

Lily is rocking her way to full size baby weight!

We get to have lots more cuddles now that Lily is getting stronger, and each kick, stretch and move is more powerful than the one before…With the positive changes we’ve seen in Lily over the last couple of weeks, it feels like there is a light at the end of the tunnel. Eight weeks in the NICU, and seven more weeks until we can expect to see her looking full term size and a bit closer to coming home!

She's doing a great job with her breathing, still with a fair bit of oxygen, but doing the breath on her own and relying on the machine to provide her with pressure to keep her lungs open.  She has been much more settled when we visit, and its a pleasure to watch our little girl growing and becoming more content with her little life.

Mr T and I have been putting together a nursery at home for Lily over the last week, I have just a few finishing touches to go, and then I’ll share some pics. Sammy has been checking it out and making sure everything is to her liking!

Lily the wonderbaby

Lily update: 7weeks old, 49 days & 32 weeks gestation

After a huge week last week, Lily has managed to stay off her tube for the entire week. A super positive week for the T household with Little Miss proving her strength and determination once again. 

Lily has been having treatments over the last seven weeks to close what they call her PDA. Patent Ductus Arteriosus. When big term babies are born, this duct closes itself with a big cry and seals it off forever so that the blood can be directed to where it is needed. With an open PDA blood is diverted away from the lungs and back into the heart, some blood does not get oxygenated, creating a lack of oxygen delivery to the rest of the body and a corresponding increase in carbon dioxide levels. In addition, the amount of blood supplying other vital organs may also be reduced. The heart may enlarge in order to increase blood flow. A severe PDA may increase blood pressure in the lungs and cause weakness in the left ventricle of the heart. This in turn may create pulmonary edema, which is fluid build-up in the lungs, which will make breathing very difficult.

This has been Lily’s achilles heel…Lily was given a few medications to assist in the closure, the first two, ibuprofen & indomethacin didn’t work for Lily, but the last course of paracetamol has had some effect…yay!!! Her duct is now much smaller and her left side of her heart has gone back to a normal size. We could see these changes reflected in her oxygen saturations and respirations as she has been sitting much higher and more stable the last few days. 

We have had Granny Fe and Papa Vic visiting over the weekend, so Lily has had special visitors and more cuddles for Mummy T and Daddy T too. We think she is going to be Daddy’s little girl, Mr T has a very calming ad soothing effect. His cuddles and voice make her very settled and content. 

Lily is growing big and strong, and I can feel the power and strength of our little one, when we change her nappy and do her cares. She is on 10mls per hour of feeds which are full feeds for her weight, she is so, so close to 1.5kg now, and will be there any day now as she is currently 1.48kg. 

I can’t believe how big she is growing, if I had doubled my weight in seven weeks, I would be very concerned…so when I think about it that way her growth has been very fast. All that growing equates to more use of her bowels, and she swapped houses yesterday as the other one needed a good clean, and was getting a bit too stinky. There was a rather terrible pooing incident the other day; involving multiple nappies, wipes and the cleaning down of the windows in her house…

Since having her tubes removed from her throat, we have heard a few tiny squeaks from Lily, but nothing big yet. Her tubes were placed either side of her vocal chords, so her throat is a bot hoarse and dry, but with time she will recover and hopefully we’ll hear a fully blown scream one day soon, I can’t wait!

Lily has now been in the NICU for 50 days, and we have seen so many other babies visit in the spot next to Lily. Going from strength to strength at the moment, as she grows and gets bigger, she copes better with the big wide world she arrived to early into.

A big week for Lily

Butter wouldn’t melt in this little mouth right? Wrong! 

Peaceful and snug as a bug in a rug, little miss Lily had big plans for herself this week…we were enjoying a quite Friday night bedside with our little girl after a big work week for Mr T; but Lily decided to give us one more little surprise for our Friday night. The self extubator did it again, only this time she did while we were there. I’m not sure there is a more stressful experience, and I’m not going to challenge Lily to find one, this one was more than enough! The horrible feeling in the pit of your stomach, when you know something is wrong, but you can’t fix it, and you’re not sure if everything is going to be ok….I’ll be charging Lily when she’s older for the hair appointments I need to cover up the grey.

Clearly annoyed with her ventilation tube, Lily decided to make matters into her own hands and dislodge it; the quickest way to get every nurse and doctor in the NICU to race in and see what’s happening. The sounds and noises are more serious than usual, as the oxygen saturation drops, followed by the heart rate and respirations.

A silver lining this time though…they trialed Lily without her tube, and a ventilation called CPAP, delivering oxygen just through her nose, rather than directly into her lungs…and so far the little rascal is still on it and going well. Still having desaturations in her oxygen and forgetting to breathe every now and then, but coping so well. Her new gear makes her look a bit rapper, a bit hip hop and bit spaceman like. She has a groovy little hat and a nose shaped cover with prongs that give her oxygen.

I think she must have just been ready to have a go on her own.

More exciting things over the weekend as Mr T had his first cuddle. The first cuddle is so special… Hopefully if she is able to stay off her tube ventilation, cuddles will be able to be more frequent and regular, so she can have more Mummy and Daddy skin time.

 I had a secret hunch that this week Lily was doing a little better, her growing size (1.4kg & 31 weeks yesterday) is helping her cope with life just that little bit easier.

We needed some good stuff this week, I had been starting to get a bit sooky again lately…earlier this week (after two strong weeks of no tears) I found myself balling in the car on the way to hospital listening to Taylor Swift- ‘shake it off’…that’s not even a sad song! I also met my first drug affected mother in the expressing room, and combined with the smoking one I see at the hospital entrance every day on my way in, was all getting a bit too much for my weepy heart, and it’s been feeling a bit heavy.

But our little gem has had a ripper weekend and left us feeling super positive about what she is capable of…no stopping her now! 

Boobie Biscuits

Aka: Lactation cookies

This one is for Mummies today. Mummies breast feeding or expressing. 12 months ago, I would never have thought I would be googling the words lactation and cookies together.

I’m not sure who came up with this idea, but I suspect it could have been a postnatal, sleep deprived Mummy who needed something sweet, appetising and delicious to go with her afternoon cup of tea. I don’t believe eating a bowl of oats, brewers yeast and flaxseed (the key ingredients) would have the same effect or taste quite as good on their own, as they do in combination with some added goodies to make these tasty treats. What’s more, you can eat them and pretend you have to because they have the added benefit of increasing your milk supply for bubs.

So, I figured that if I am to continue expressing until little Lily can feed herself, then I’m going to have something tasty to help me through it…because that pump…words cannot describe how monotonous, tedious, repeated, and never ending that sound is!

After a few friends and hospital nurses (not the scary lactation one…) had mentioned and recommended the above biscuits, I decided to ask my Mum to make some for me, and try them for myself. My supply has been plateauing of late, could be stress, tiredness…who knows, but a great reason to try some boobie biscuits! Who knows they may even up my supply to help me keep with Lily’s increased feeds; the little rascal.

The verdict: This recipe is from bellybelly and totally delicious, regardless of whether or you not you are feeding. Mr T has tried them and he isn’t leaking…yet! They are a tasty treat. This is the link below.

http://www.bellybelly.com.au/breastfeeding/lactation-cookies/

There are some fairly wacky testimonials…but if you can get past those, the recipe is delish!

Prep time: approx. 15 minutes

Oven temp: Preheat to 170C or 338F

Makes approx: 14-16 cookies using a tablespoon (double recipe for more)

Ingredients:

• 1 cup self raising wholemeal flour (if you have plain flour, add 1/2 tsp baking powder)
• 1/2 cup butter (for a healthier option, use organic, virgin coconut oil instead)
• 3/4 cup brown sugar (if wanting to reduce sugar, you could try just 1/2 cup)
• 2 tablespoons flaxseed meal
• 1 egg
• 2-3 tablespoons of water (depends if you prefer moister cookies)
• 1 tablespoon vanilla (optional, for flavour)
•  1 teaspoon cinnamon (optional, for flavour) 1-2 tablespoons of brewers yeast (do not substitute with bakers yeast or any other yeast).
• 1/2 teaspoon salt (use himalayan salt if possible)
• 1 & 1/2 cups oats
• OPTIONAL: 1/2 cup of your fave biscuit ingredients (My Mum added white choc chips and cranberries)

Method:

1. In a large mixing bowl, cream the butter and sugar then add the egg and vanilla. Mix well. 
2. In a separate bowl, combine the flaxseed and water, let sit for a few minutes before adding to mix.
3. Add the dry ingredients (apart from the oats and your additional ingredients) and mix well again.
4. Finally, stir in the oats and your additional ingredient.
5. Make the biscuits and place them onto a lightly greased or lined baking tray.
6. Flatten them a little with your fingers or a spatula – if you like a soft centre, don’t squish them down too much.

Yum!

No News Is Good News

 29 weeks and counting

Just some pictures of our gorgeous little girl today. Now four weeks old (29 weeks) and 1.265kg. At her weigh in this week I got to give her two kisses on her warm, soft, forehead. 

Not too much has happened in the last week, she’s growing big and increasing her feeds to 5ml an hour. She is becoming more alert and used to the sounds of my voice and Mr Ts voice. She greeted me with big wide eyes one day this week as I chatted with the nurses...

She has managed to fight off a couple of new infections, and the doctors are still working on closing her duct and getting her ventilation right. She had an ‘episode’ earlier this week and was given a teeny tiny bit of morphine to settle her down and give her a good night’s sleep.

It’s pleasing to see her developing personality, even at such early stages. Lily displays her displeasure when being handled by the nurses and likes to kick at them and swat them away with her arms. When it’s all too much she makes her alarms sound to make them back off, and then quickly recovers herself when they leave her be…she raises her hands to her head in exasperation as she contemplates her next blood test…too cute! Her face tells us when she is crying, sneezing, hiccuping and upset…when her ventilation tube is eventually out, there will be sounds to go with it. I can’t wait to hear a cry or a grizzle!

We have looked at baby pictures of Mr T and I this week and can see similarities and family traits in Lily girl.

Mr T and Mrs T

It still amazes me how strong and resilient she is, she takes it all in her stride and just keeps going.

She is getting quite the reputation for herself and has a couple of nurses who regularly come to check on her and make sure she is not misbehaving. When we go in to visit her it’s common for the nurses to have her wrapped and swaddled so that she can’t wrap her little fingers around her breathing tube…as Mr T says it keeps her from touching things she cannot afford!

Keep on keeping on little one!

A Mummy Body

Today’s post doesn’t require a tissue box, (I should buy shares in Kleenex though) I promise…it’s on the lighter side and is inspired by anybody and everybody with a Mummy body, or a body that’s experienced any type of significant change or transformation. Anyone with a beautiful, brave, special body. In fact now more than ever I realise just how special our bodies are, and how important it is to love them, appreciate them and be kind to them.

Despite carrying our little Lily to just 25 weeks I feel I am still qualified to make a few comments on what it is like to have a ‘Mummy body’.

Mr T will testify that pre Lily it was (I’m trying really hard to stop this bad lady habit) too common for me to complain about this little fat bit here and there. Mind you, this has never stopped me from maintaining a healthy appetite, eating regularly or indulging in ice cream, chocolate and corn chips (some of my favourites, but not all at the same time…)

Being a Mummy has given me a new found appreciation for the body I live in, and the amazing things our bodies can achieve; not just child birth either.

Mr T will also tell you that before Lily, I was what some might say a little bit exercise crazy, there was a period there where even SeanT’s insanity didn’t cut it…what an outsider looking into our garage each morning at 5am would see (for about the last 4 years), probably resembled many people’s bad dreams. A boot camp style high intensity, sweat till you die and can’t move kind of workout…rain, hail, shine, five days a week; sore body or not.

This process has taught me, much to Mr T’s relief, that it is totally unnecessary to be training constantly as if preparing myself for an Olympic decathlon. Michelle Bridges is awesome, but so am I!

Post Lily, I have begun walking our puppy, but will admit that I am keen to do build a little bit of strength back again. Exercise has always been my stress relief and a major part of my coping strategy, so at the moment 4 laps of the park and post pregnancy speed with the dog doesn’t just quite do it. The other day when I left the hospital, I just wanted to run…as fast as I could…as far as I could…until I couldn’t go any further; I wanted to feel the burn in my legs, the tightness in my chest; to clear my head. Unfortunately though, that while my head said yes to this, my body still says a big no! I am learning to be patient though, and before long I know I’ll be able to get a bit more of a sweat up, when my lower abdomen doesn’t feel like a simple giggle requires a quick dash to the toilet or that you’ve just done the ab workout from hell.

Even though I’d like to feel a little fitter, I have a new love for the soft squishy tummy I have grown, and even though it’s mostly gone back to how it was, I kind of like it; I wouldn’t mind keeping this little bit of tummy for a little bit longer.  I think I have been partly grieving not being pregnant for as long as I was meant to be, and while I can still see a little bit of tummy left behind, it feels like I still have a tiny connection to the pregnant body I wasn’t ready to say goodbye to.

Things will change, time changes lots of things, and for me Lily has given me a new perspective on bodies, exercise and loving the bodies we have…

So, the next time I look in the mirror, I think I’ll be just a little bit kinder to myself and more importantly kinder and more understanding of those around me. Who knows what their amazing body has done for them…Probably also just a tad more likely to reach for the extra cinnamon donut I’m eyeing off on the bench.

Yep, that was tasty!

Is that a grey hair?

No not yet…but I seriously think, that if I escape and survive this NICU thing without a grey hair, extra kilo or two and a face that looks like Mrs Twit it will be a miracle. A miracle like Lily. Mr T is already going grey, so he’s all out of luck in that department, he’s lucky he’s already got good looks and a svelte figure capable of consuming large amounts of chocolate, carbs and delicious delights without consequence, so I think he’ll be ok.  Lily seems to handle her setbacks and near misses a lot better than we do, simply fixed with a good rest and a sleep afterwards. No amount of sleep at the moment could fix the permanent heavy cloud that hangs over our heads, on the other hand I have thought how nice it would be to hibernate under my doona for the next few months…and wake up when it’s all over.

Tough one this week. Lily has been having lots of trouble with her breathing, due to the infection she had when she was born. It’s made everything that extra bit harder for her. She is also developing what they call chronic lung disease (sounds terrible) because of all the ventilation and oxygen she has required over the last three weeks. The lifesaving treatment she is receiving which she cannot live without, is also causing her harm, with scar tissue beginning to form on her lungs. In this case the positives of the ventilation outweigh the negatives. Lungs however continue to grow and develop until 6-7 years of age, so it is hoped that in that period of time Lily’s lungs would be able to repair themselves and resolve any respiratory illness she faces.

I had been doing really well this week with Mr T back at work…until yesterday at the mention of this next issue. The tears welled in my eyes, and the lump in my throat came back. Poor Lily, such a long way for her to go. I just wanted to pick her up and make her better, but I can’t do either. There is no comfort in the situation, and as much as you worry, the worry doesn’t make any of it better either; what will be, will be. Just as before there are still no certainties as we watch and wait for Lily to do her thing and decide what she will do. All that is left is to believe that she knows what she is doing, and trust her to be strong.

Another reality hit me yesterday too; Lily’s journey will not be over when she comes home…the life of a micro-premmie is fragile for a long while, well into childhood. With the lung issue she is developing, she may remain on oxygen after she comes home, and cold and flu season will be horrid. Home will probably be on lock down, as any risk of infection to Lily could cause serious respiratory issues that put her back in hospital. This all seems like the worst case scenario stuff, and it is…but that is what struck me yesterday, our little girl may well have long term issues beyond NICU that I hadn’t thought of yet. I hadn’t stopped to think too much about the future, having been so focused on the present. A little naïve perhaps, but I had initially thought that once she got through her first couple of weeks, things would get easier, not harder. With her increasing size and the effects of treatments on her tiny body, the underlying problems are becoming more medically significant and apparent for her.

That was yesterday morning…little did we know Lily had other plans for yesterday too. In between me leaving at about 12:30 and our return for Daddy’s evening visit at 6. Lily had been up to mischief. She decided to dislodge her own breathing tube, causing her heart rate to drop dramatically and the tube needing to be reinserted promptly by doctors, with some extra oxygen while they reintubated her…again. That makes 3 intubations in 48 hours.

The very kind night nurse must have seen the total look of despair and defeat on our faces last night as we sat next to Lily. After only three weeks in NICU the tiredness and complete emotional and physical exhaustion has begun to set in, and I guess our faces showed it. She introduced us to the Mother and Baby in spot 1 of our bay who was born at 23 weeks. Her little girl is nearly one year old, big and strong! There is plenty of hope for Lily girl!

Having a rest from my visit this morning, and saving myself up for a visit with Jerry tonight.

Hope she’s a good girl today….please Lily, with a cherry on top?

Nearly a kilo!

Baby Steps...

Yesterday they tried to extubate Lily again to make her do more of the breathing on her own. She lasted three hours before she decided she’d had enough, when they had to put the tubes back in again. (The tubes go in her mouth all the way into her lungs). They were trying to get her to do all the breaths on her own with the cpap (groovy little mask and snorkel looking thing on her nose). Her duct is still open, so I get the feeling she won’t be ready to breath on her own until it has closed. The first round of Nurofen has not worked, so it is likely that they will do a repeat dose of Nurofen, followed by Panadol if that does not work, and failing that if required and her breathing is still tricky, they will perform a small surgery on Lily to manually close it.

After her big day yesterday she looked pooped when I visited this morning, but happily napping away, and kind enough to leave me plenty slobber and goobies to clean up. I read one of my favourites to her today…”Oh the places you’ll go!” She’s such a little trooper, and already takes everything in her stride, she’s definitely going places.

She is getting bigger, and after another weigh in today she is now 966g, she might make a kilo by the weekend! 

An interview with Lily T

Sunday Sunshine... 

A beautiful Sunday today. A home cooked breakfast at Mum & Dad’s house. Moroccan baked eggs and rhubarb & berry pudding. A visit to see Lily; and weather that made it feel like Spring was coming. Crisp and fresh, sun shining bright, with a hint of warmth and happy. It’s amazing how a bit of sunshine can change your mood. It can change your perspective and instantly makes you feel hopeful and positive. I think Lily must have felt this from her Level 5, Bay 9 house today too…she knew the sun was shining…

Lily T despite only 2 short weeks on earth has attracted the love, affection and well wishes of many friends and family (her adoring fans- already a rockstar!) More than ever before in the thoughts of many, and keeping us on our toes and making sure life is already very much all about her. Today as we entered with Grandma & Grandpa Sharp, she looked like a little piece of…... Curled up on her tummy, legs and arms tucked in neatly, she was peaceful and still (a rarity- every new doctor/nurse comments on her level of activity and movement). The calmness she exuded as she napped was soooo nice, very different to the last two days where she has constantly set off her oxygen alarms for hours on end, due to leaky tube, had a sore tummy from her milk and been put onto a different type of ventilation which delivers rapid amounts of air to her lungs to clear them of carbon dioxide (because it seems she does not want to do this for herself!). The high pressure ventilation is like a baby massage, pumping 14 breath per second into Lily, giving her chest a constant little wobble as it pumps in the air. 

I thought it would be good today to interview Miss Lily and get her thoughts on what is going in the crib...Bay 9: Place 4. After all she is definitely already a medical veteran.

Here we go:

Lily Lee Roth? Lily Van Halen?

 Good Morning Baby T, thank you for allowing us into your crib today. Please share your thoughts so far with your followers…

If you had one message to tell everybody what would it be?

Hold in there Mum and Dad. Contrary to what I look like in here, I'm just chilling out...it may be tough sometimes, but I'm actually super strong and stubborn like Mummy, so I'll get through this…just in my own time and my own way. Keep believing in me and everything will be ok. I don’t know what you are all so worried about, I’ve got this!

What do you want to be when you grow up?

I'm going to be a mover and a shaker in this world, so I'll do something that makes a difference somewhere. I'll go further and higher than Mummy and Daddy ever have and cause lots of trouble. I see myself doing something that helps others. Mummy and Daddy don’t want me to be too extreme, but I wouldn’t be surprised if I end up in some kind of humanitarian work, saving whales on the Sea Shepard, advocating for women who suffer domestic violence, or, building schools in developing countries. This will go with my courage, passion, and zest for life…

What has your stay in hospital been like so far? 

This place is ok, they feed me, change my bed, clean me, and make sure everything is ok...so not too bad really, better than a crummy hotel without heating. I'm not too fussed about all the things going on in here, there are lots of lights and sounds all through the day and night, but these have become the creature comforts I am used to. 

How is the food?

Mum's milk is yum, they don't give me enough. I'm having a break at the moment though, so that my tummy can learn to grow and digest it all a bit better. My tummy has been misbehaving, so I'll try my milk again in a day or two. That stuff is great though, can’t wait to get onto something more substantial though, you can’t get a good steak in here, and there’s no raspberry cordial either…

Do you have a favourite nurse?

I like the nurses who talk to me and say nice things when they jab me with needles and stick things up my nose. I have a very cute personality, so it's hard not to love me, but I like the nurses who tell me I'm cute too. When the nurses are annoying me I swat at them with my arms to get them to go away, I wriggle around in my bed to move my lines away (which annoys the nurses sometimes), and I jiggle around when they try to change my nappy. I prefer it dirty. I don’t know why they have to change it all the time! Grownups and cleanliness- go figure!!

What are you going to do when you get out? 

I’m going to get some lovin’ from Mum & Dad, and anyone else who will cuddle me. I can’t wait to see my new digs (they better be good), and I’ve heard Mum and Dad talk about a four legged friend at home. I hope she likes me. I’ll just poke her in the eye if she doesn’t. I can’t wait to share my smile and cute little button nose with family and friends, and look forwards to walking around the park in my snazzy new pram, all kitted out in the cute clothes people have been buying me.

How do you feel about …..Oh right sorry…

I need to keep napping in here, that’s enough for today, it’s time for Dad to read me a book again. I need to find out what happens to Grandma when George gives her the marvelous medicine. Go take your questions elsewhere…

The NICU journey

Baby Rockets and Space Stations

Before we begin, it’s nice to note all the good things Lily has done in the last 48 hours.

•          Lily has got a little heavier and passed her birth weight, now sitting at 786g…
•           Lily has perfectly functioning bowels…the poo poos have begun...

The NICU is like a space station, each baby in their own mini rocket ship, hooked up to drips, tubes and air. We have joked that Lily’s first mobile is the stainless steel, multi-prong hooks which hang above her bed and hold the medicines and fluids she is hooked up to. I don’t think she will like the cute birdies and love hearts I have made for her when she comes home…

A baby like Lily born at 25 weeks will be in the NICU until at least her due date, give or take a few days…or weeks. If you goes well she may come out a little earlier, however for each set back, infection or complication she encounters more time is added to her stay. Today is Lily’s 11^th day…it is 94 days until October 17, Lily’s original due date.

We have been told it will be hard, there will be ups and downs. I am recording the all the good things so we can look back at the good stuff Lily does when things are not going so great.

Lily's hand compared to Daddy's finger 

There have been a few tough days, even though Lily has already celebrated a full week of life and is now 26 weeks old (nearly 27). Sometimes when we go to see her my heart sinks for her, melts, shrivels up and wilts like a dead rose. The last couple of days the tubes intubating Lily to help her breath are getting too small for her, so lots of air that she would be breathing is leaking out and causing her oxygen levels to swing up and down rapidly, each over or under saturation of oxygen sets her alarm off, sometimes constantly over periods of 15minutes. I hate the alarm sound. Doctors are also treating the duct which is open in her heart with nurofen, so they will try and wait a few days to see if it closes the duct, rather than intubate her again, to avoid unnecessary trauma for Lily.

The heavy feeling in your heart is one we have become used to lately, there isn’t a moment in a day when you don’t think about Lily. You feel guilty for not being there all the time, restless when you are not with her, and irritable as you get ready to go in, as you can’t make it happen quick enough.

It is comforting as you enter the NICU; the hand sanitiser, hospital smell and warmth have become the smell of Lily that you desperately hold onto as you leave each day, and make your way back to the car park, freshness (and coldness currently) of the outdoors.

At the moment it is nice to go with Mr T, it will be harder once he goes back to work. We are much stronger when we are together. I’ve become quite dependent on Mr T, he has looked after me so well over the last 6 weeks, that it will take me a while to get used to being on my own again. I’ll have to navigate the corridors on my own, pack my lunch and remember not to forget things, I think the scariest part will be driving again, and the hospital car park…that place is crazy!

The human body is amazing at times like this…In among all the anxiety, worry, fear, stress and anger there is a surreal sense of calm with everything else happening outside of the hospital…nothing else that happens beyond Lily matters. Traffic jams, running out of muesli, even at a stretch Mr T’s nose blowing…none of it matters…just Lily!