Spring has sprung in Bay 9: 37 weeks old

The beautiful sunshine and spring weather pours in through the window in Bay 9, it means we are approaching the time of Lily’s intended arrival and heading into week 37.

It’s been a little while, but our little treasure Lily has been keeping us busy lately. In the last two weeks she had made lots of great progress. I am so, so proud of our little pocket rocket. She now weighs 2.5 kg. When you hold her she is no longer fits neatly under your chin and above your chest, nor is her skin thin and fragile. She sprawls out all over you, arms in your face, legs near you belly button and grunts and grizzles when she’s unhappy. Her skin is soft and healthy and she nuzzles into you and turns her head so she can have a look at the grown-ups holding her. The warm air she breathes on your neck and the rise and fall of her chest on yours, (sometimes slow and sometimes fast) is hers, her own breathing, so different to the mechanical breaths she relied on previously. It reminds you at that warm cuddly moment, that you have a little daughter, who is in fact a teeny tiny little life.

Still working on her breathing and airways, but feeling like her lungs are getting stronger. The doctors are making her work hard on her breathing and very slowly weaning her off high levels of support, trying her out on less invasive respiratory help. She is on bubble CPAP and has two lots of two hours a day on high flow, which is just two little prongs that sit inside her nose, rather than the big snorkel mask she has been wearing. They will build this up to 4hours and 2 hours over the next week or two. At the moment she is coping so well with all her new challenges, and just keeps getting stronger and stronger. 

I don’t like to get my hopes up, but hopefully we are not too far away from leaving Bay 9 in the next month or so, putting us closer to the door home. As your baby gets healthier, the bays with lower numbers imply your baby needs less support. So, bay 7,8 & 9 are NICU- intensive care, 3-6 are also a bit graded, but more like just a special care nursery, and bay 1 & 2 are like a fat farm, plumping them up before they send them home happy and healthy.

Lily has been madly sucking away in her cot the last couple of weeks, so yesterday while she was on her high flow she had a go at a suck feed. She has a cleft palate, in the soft palate at the back of her mouth. This just means that she has a very good sucking action, but doesn’t have the strength to create a good seal in her mouth. She had a really good go yesterday, using a special teat on a bottle, she managed to have 5mls on her own.

As Lily approaches her original due date we are meeting more specialists who are responsible for tracking her development and other allied health services that will work with us. These people balance out the medical intervention she receives to keep her alive with the impact these things have/had on her physical/emotional development. She is watched by a physio, and has regular eye checks. Today we met a music therapist to talk about how we can support Lily in her noisy room with some soothing music we can leave playing for her, and how we can create positive interactions with her using simple rhymes and songs. Apparently she is already very musical, entertaining the nurses with her regular bottom burps…not sure where she got that from…he he…

She’s such a cute little kid, her cuddles are the best and she has started to look at our faces as we peer into her cot. She attempts to follow your eyes and I swear there was nearly a half smile looking thing today…Every day she amazes and inspires me with her tough little attitude and super strength.

Lily’s new digs

I hadn’t even thought about a nursery, or even bought any baby related items before Lily arrived…her impatience and early arrival gave me the opportunity to do things in reverse. I have spent the last few weeks pottering in Lily’s room getting it ready for that special day when she comes home. It was an important milestone for Mr T and I.  The day we thought it was time to get the nursery ready, was the day we felt more secure and confident about the future of our Lily. Before that it felt too soon, too fresh, too presumptuous.

It is such a nice spot in the house, it’s nice and bright and the sun pours in all day. I have had so much fun putting it together. I chose a grey colour for the walls, with white furniture… and then went rainbow bright on accessories in the end. I picture little Lily rolling around on her rug and hiding under the cot from Mummy and Daddy at bed time in the future.

I spend a lot of time in there already, as this is where I express; Mr T often joins me in the morning while he eats his brekky. Sammy, thoroughly approves as she has discovered the second warmest place in the house under her new favourite heater duct, and also likes to sit on the felt ball rug.

What a little lady!

The love and kindness we have experienced so far on our journey with our little Lily has overwhelmed us at times. For the support from our nearest and dearest we are forever indebted. The wonderful people we have met at the hospital in the NICU are equally amazing. They always make sure you are ok, ask you to be involved as much as possible and have genuine care for the babies they look after…these people are amazing. One nurse in particular, Lily has a special rapport with. Lily has her wrapped around all of her teeny tiny fingers and toes. She made Lily a special little dress to wear. Today we got to put it on. She looks so adorable, like a proper little lady!

Skin time with Mummy

Cleaning up after nine weeks!

Lily also had her first bath today, followed by more cuddles and then dress ups. She gets so relaxed when she has cuddles that she forgets to breathe as much as she is supposed to sometimes. Lily is getting bigger, so they are weaning the temperature down in her isolette, so that she can be in an open crib, hopefully by the end of next week. This means she will be able to start wearing more clothes.

We have made lots of progress in the last few weeks. It is only when you stop to look back at photos from the last eight weeks that you realise what a trooper she is, and how hard Lily has been working to grow, grow, grow! Check her out over the last nine weeks...766g to 1.840kg

Lily Van ‘Walen’

I never thought it would be so exciting to hear the tiny sounds of precious Lily. This week she surprised us with a cry. Something so small, but so special. She’s warming up those vocal chords so she can join Mr T in in a ‘Jump’ rendition.

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!