Running 4 NICU Update

It is definitely time for an update as I know it has been a while. I had planned to write weekly blogs, post regular pictures and remind you all to go and support this amazing organisation (The Neonatal Intensive Care Foundation)by donating to our page https://www.gofundme.com/running-4-nicu

So last you heard I was to be the first person running the Australian Running Festival’s half marathon with a pram (twins included) and training was going wonderfully. The girls loved their awesome running pram (and still do) and they were on their best behaviour on all our runs (still are). However, our campaign has changed just a little.

We are still aiming to raise $3000 to purchase the much needed Neopuff machines for The Canberra Hospital’s NICU (so please get on that already if you haven’t and donate!). The only difference is that just over 6 weeks ago now (hence the silence) we got a huge surprise when we found out that we are expecting baby number 3 (another blog post to come on this soon). And of course it is Dr’s orders that I do not run this race. Thankfully my amazing husband is stepping up and will be running the event with the girls while I cheer them on at the sideline.

big sisters 2

There are only 13 days left until this big day! Please please please go and fund us. If everyone that has viewed our posts so far had only donated $1 we would already almost have reached our goal of $3000. Honestly, any amount will be greatly appreciated and will go towards saving precious baby’s lives just like Dahli and India.

Thank you so much to all who have donated so far!

I know we have missed a lot of advertising time for this event while we waited until we were at least 12 weeks (13+1 today) so be prepared to be reminded daily that we would love your support and generosity with any amount of a donation!

 

 

 

 

 

 

Love Terri

Week 1 training – Running 4 NICU

In case you missed the memo, we are running the Australian Running Festival Half Marathon on April 14th. We are doing this to raise awareness about premature birth and funds for the Neonatal Intensive Care Foundation (see previous blog for more info or go to our pagehttps://www.gofundme.com/running-4-NICU 🙂

I am posting daily on our insta (double_the_luv) and for our blog, my aim is to try and do a recap at the end of each training week up until the half marathon on April 14th. So here is Week 1….

Our little Warrior Princesses turned 1! It was a huge, emotional few days with a birthday party on Saturday, Christening on Sunday and the girls actual Birthday on Monday. We had friends and family travel a long way to celebrate our precious girls as well as friends who live locally. Of course we had a Warrior Princess theme! The girls were absolutely spoilt and we enjoyed time in the sunshine and in the pool. Thank you to everyone who came. The girls had a wonderful time  🙂

 

 

 

 

Day 1 of training

Our training kicked off on Monday, the girls actual birthday. Of course we had our morning snuggles and the girls had their 6:45am bottle then we headed off for our 5km ‘easy run’. The girls were happy and settled the whole time and even enjoyed a nap. 🙂

When we got back I attempted a sweaty group selfie and then cooked the girls a green pancake stack and sang happy birthday. It was just us girls because poor Baby Daddy had to work.

Day 2 of training

Tuesday is the training day I dread. Intervals! This morning we did a 2km warm up, 8 x 60 second sprints  (well as hard as I can go for 60 secs), with 60 sec rests and then a 2km cool down. Last week I did 6×60 sec sprints and felt like I was going to die! But this time, I felt that I wasn’t as exhausted so I think I am improving!

tuesday runDay 3 of Training

Rest day! This morning I attempted some Yoga while the girls played. They lasted 15 mins and then we went for a walk. We played lots and the girls fussed a lot (they have a little cold) and we also had a little dip in our unicorn pool.

Day 4 of Training

This morning I was supposed to do a 2km warm up and 2 km cool down with 2x 2km race pace (3 minute rest in between). I changed it up a bit though so the girls wouldn’t fall asleep because we were going to buy a pram after their morning nap so a pram sleep was a no go! We just did 1km warm up and 1.5 cool down with the 2x 2km race pace and then we had another little run when we went to try the pram out.

Planned to perfection, the girls napped beautifully after their breakfast and we went to purchase BOB! This pram is huge! But it is a proper running pram, feels great and I am so excited that we can train and run the event with it!

Day 5 of training

Just an ‘easy 5km’ this morning in our new truck! We had a little stop off at the shops. So glad our local grocery store has extra wide isles for our sweet ride.

day 5

 

This brings me to the end of week 1 recap! So far we have raised $690 which is fantastic!!! We have however, reached over 2000 people and I can’t help but think if each of these people had donated just $1 we would already almost be at our target! Please help us. Donate. Share our story. Cheer us on!

 

Love Terri, Dahli & India

 

Running 4 NICU

Please help us raise funds: https://www.gofundme.com/running-4-nicu

The Neonatal Intensive Care Unit is a place that no one ever wants to visit or no baby ever wants to call home. Even so, this place is where miracles happen. Here, warriors fight the fight of their lives and their superheroes work their magic. It is a place of uncertainty, isolation, grief, exhaustion, guilt, longing, and loss.  Yet also a place of wonder, hope, joy, gratitude, life, love, pride, strength and humility. Although we prayed for the day we could leave NICU with our babies, we also have the upmost respect and gratitude for the world of NICU. Before our babies, we were unaware. But now we are so aware. We know that if it was not for the skills, expertise and resources available to us and our girls in NICU,  then our story would have ended in complete and utter heartbreak.

I have talked a lot to my husband about how we could possible give back, after our time spent in NICU. I wanted to do something that would hopefully turn heads and raise awareness while also raising much needed funds for the NICU in Canberra. One day he suggested that I run a half marathon with the girls in tow and raise funds for NICU.

So, as our beautiful girls are about to turn 1 (9 months corrected), we have started to train in preparation to run the half marathon in the Australian Running festival to raise awareness about premature birth and funds for The Newborn Intensive Care Foundation. I will be pushing the girls the whole way who will then be 15months old (12 months corrected). We have been given a special exemption to run with our twin pram and will be the very first pram in this event! We run on the 14th of April, which is just 5 days before the day that the girls were supposed to be born.

A bit about our charity:

The Newborn Intensive Care Foundation is a local charity that raises money for medical equipment, research and nurse education to help give the ACT and Southern NSW’s critically ill newborn babies, the best chance to lead healthy, normal lives. During our time in hospital I was not aware of the amazing work they have done but after our girls graduated NICU and Special Care, I found their website and all the wonderful things they have been able to achieve.

This foundation purchased a Nava ventilator,  which pretty much saved little Dahli’s life (we have joked that we might give her the middle name Nava). Things were not looking good until this amazing technology came along. And not only do they raise money for equipment and education but their funding helped me to provide breast milk to my babies. They purchased the brilliant breast pumps and funded a trial for a dedicated lactation consultant for the NICU which was successful-  and this amazing lady is still there!

Currently, NICU needs 14 Neopuff machines with each one costing $1,500. Neopuffs are neopuff-t-piece-resuscitator-500x500resuscitation devices used to provide breathing support if a baby stops breathing or has an apnoea (pause in breathing associated with prematurity). These devices provide blended air/oxygen and an inspiratory pressure and end expiratory pressure. We are hoping to raise enough funds to purchase two of these.

If you would like to see more of the amazing work this foundation does, you can check out: https://newborn.org.au 
From the very beginning our warrior princesses Dahli and India had a fight to live and without the incredible advances in neonatal technology we would not have our beautiful twins brightening our life every day.

We race on Sunday 14th April (feel free so come and cheer us on!) and we hope that we can raise $3000 to donate to the Newborn Intensive Care Foundation so we can give back in whatever small way possible.

If you would like to follow our journey, training, and life after NICU, please keep reading our blog: https://doubletheluv.com

and follow us on Instagram at Double_the_luv

Thank you so very much,

Love Terri, Luke, Dahli and India

go fund us

World Prematurity Day

Part 2

As World Prematurity Day draws to a close across the globe, I nervously publish the second part to this poignant and honest post.

Our identical twin girls were born on 21st January, 2018 at just 27+3 weeks. They were both 35.5cm long, Dahli weighing 925g and India 890g. I’d like to do my best at describing some of our time in NICU. I don’t know that I have all the words to convey the raw journey that it was. But I hope to shed a little light. Perhaps this small insight may help to prepare someone just a touch for the journey that they, or someone they love may one day have. Of course all NICU journeys are different and this is just part of my experience.

My first visit to NICU was shortly after my emergency Cesaerean. Once the wardsman was happy that I had feeling back in the lower half of my body, they wheeled me up in my bed to meet my girls. I remember feeling so excited but also a little hollow inside. We got to the door…I was ready…and then we were turned away. They were not ready for us yet and still floaty from medication I just smiled sweetly; I did not really mind that I had to wait longer. I felt like they were not really mine anyway and the doctors and nurses needed to be their protection at this time.

birth

Later that afternoon, they were ready for us to visit and so I was wheeled up in my bed once more. It felt so surreal. I was still floating and running on adrenaline. I could not wait to meet them. They opened the heavy door and wheeled me in awkwardly. There were two humidi cribs at opposite sides of a largeish, sterile room. I think it was Dahli that I met first, to the left side of the room. They wheeled my bed right up against it, but I couldn’t see. They adjusted the height of Dahli’s humidi crib but I couldn’t lift my body so I could barely see a thing. She was inside a perspex box, in a nest and I couldn’t see over the edge. I think I caught sight of a leg and maybe an arm but my body was so heavy, I tried so hard and felt that I let her down. I wasn’t able to see her the way I needed to see her.

peep hole

It was then time to be wheeled over to India, my husband recorded this memory on my phone. The exact same thing happened; I couldn’t see her. We had someone take photos of my husband and I next to the thick perspex cribs. Our first family photo, well not exactly (one baby at a time) and you couldn’t even see our little girls. I didn’t let myself cry. Instead I asked my husband to take photos of the girls for me and when back in my room, I was able to look at them (silently disappointed at my husbands photography skills). Tiny, red gummy bears. Eyes closed. Paper-thin skin. Not an ounce of fat. So fragile and weak. But all I saw was perfection. They were here and they were mine. I was ecstatic. The thought that they may not make it never entered my mind. I wouldn’t let it. I was happy and we had no idea what the journey ahead would involve.

That day I also started a new hobby…expressing. Just an hour after the girls birth, my nurse came and taught me how to hand express, collecting with a syringe. This was my job. I remember telling my husband that it was my new favourite thing to do. My milk was sent up every hour.  I was nourishing and protecting my babies in the only way I could. My expressing machine was my new best friend.

The following day after practically no sleep due to regular meds being pumped through me and expressing every couple of hours, we were allowed to go up again to see our babies. My husband wheeled me up in a wheelchair. And this this time the lights were on…physically, mentally, emotionally…

I stood up like a frail old lady, keeping my chair behind me incase I fell. And there was Dahli, protected inside her little perspex box. Oh my heart as I peeped through. I felt torn. Torn because I couldn’t just reach out and grab her and torn also because I needed to see India at the same time, but I couldn’t. I just had to be patient. Dahli first and then India. 

This time I saw them I noticed all the wires and cords. I saw the bulky CPAP strapped on with their tiny little genie hat. I heard the alarms, the beeping, the bubbling. These beeps and alarms I would grow to understand (and hear all night long in my sleep). And the bubbles, well they were eerie and made me anxious every time they stopped. Bubbles meant my girls were breathing and the air was helping to open their lungs.

I remember meeting the nurses. The nurses who were my heroes. Who even though they did their absolute best to make me feel like a parent, it still didn’t feel like my babies were mine. In fact, it felt like they had been stolen. I missed my whole final trimester of pregnancy and for now my babies were theirs. Weirdly, I was okay with that. These heroes were keeping my babies alive. They were who my girls needed most. For now I would look on with pride and worry as my girls fought. I would touch and hold them whenever I could. I would pray. I would sing and read to them. I would write in both their journals every day. And I would continue to pump my heart out to provide them with my magic milk. On this note, I also remember the encouraging lactation consultant and the kind words from doctors and nurses about my expressing efforts. This meant so much to me. It helped me feel more a part in my babies lives.

Twice a day we helped with the girl’s ‘cares’. This meant changing their nappies, giving a head and ears massage as the nurses changed the CPAP, helping administer oral drops,  gently wiping under their arms and neck and if we were lucky, holding them up as their nest was changed. Cares was everything. While the CPAP was changed I remember the awful sucking tube that they would thread into the girls noses to suck out any gunk. The tiny little mouse like squeals the girls gave when this happened broke my heart. As we changed our first nappies, I noticed that our babies didn’t have a bum crack like normal newborns, just a hole. They were however, still pretty fantastic at pooing! Cares was the time we could feel a little more connected with our babies. Each day we would notice something new about our little miracles. 

daddy head massage
India gets head massage from daddy

Daily the doctors would do their rounds. I would always feel like I was holding my breath until they gave me the day’s news. It wasn’t just one or two doctors. Everytime the team came through, the room was full. I think there were about six or more plus the two nurses allocated to our babies. Although this was overwhelming and scary, it was also reassuring that such a large, professional and compassionate team were taking the absolute best care of our precious baby girls. No news was always good news. And then there were days when they would speak and the room would spin, my ears would ring and I felt the urge to run and hide. 

So I have attempted to try and explain our first couple of days in NICU. But I know that my words will never be enough to convey the experience properly. So many new things, so many layers of emotion, so much uncertainty. Feelings of isolation, heart-sinking and heart soaring moments, as well at times of complete hollowness. I never broke. Of course I cried, but not as often as I thought I would. I held myself together on the outside. My girls had no choice but to be strong and so being strong was the least I could do for them. Our mantra was always ‘one day at a time’, and then finally, after 91 days, came the one perfect day: the day that we took our babies out in the sunshine. The day when we buckled them into their fluffy cloud-like seats. The day we blared ‘I’m coming home’ on the car stereo. The day we walked the girls through the front door and introduced them to our confused doggies. The day I felt totally and utterly complete.

In concluding this post, I asked my husband how he would describe the experience as I feel that my words really have failed. His response included the following: I don’t know. It’s hard to explain. Purgatory. Limbo land. It was shit. You don’t know what’s going on. You don’t know if you should be sad or happy. You don’t know if you’re babies are sick. You don’t know if you should continue normal life or if you should be there every day. When you’re not there and you remember that your babies are, you get really sad and just want to be with them… And at the end of our conversation, together we agreed: You just don’t know how to do it.

To all the NICU Parents in the now, in the past, in the future: You’re babies are the strongest people that you will ever have the pleasure of meeting. Have faith. Reach out. And please know that you are not and never will be alone.

Love Terri

professional

 

 

World prematurity day

Part 1

Yesterday I was thinking to myself, ‘I really should move past this… it has had a hold of me for too long.. it doesn’t have to be this way anymore.’ But then a day like World Prematurity Day comes around and I remember why it is okay to feel and why it is okay to keep sharing. Because we are not the only family that prematurity has affected, we definitely won’t be the last, and in no way are we the most affected.

then and now

Every year, 15 million babies are born premature worldwide. More than one million of these babies die, and many more face serious, lifelong health challenges. Worldwide, one in ten babies are born too early – more than 25,000 each year in Australia alone. Raising awareness of preterm birth is the first step to defeating it (miraclebabies.org.au) and I believe that it can also help to shed light on how common it is and what the experience can be like.

Having a premature baby or babies in my case, is heart wrenching. It’s so frightening, frustrating, isolating and traumatic. It is something that no one should have to go through. NICU (Neonatal Intensive Care Unit) parents have experienced loss in one way or another. In many cases, NICU parents never get to bring their babies home. We were so blessed to bring home two gorgeous baby girls and not a day goes by where I forget how fortunate we are.   

 

In NICU I constantly felt lost. Of course there were many ups and downs in the rollercoaster that is NICU life, but one thing I intrinsically knew, was that I needed to celebrate the mini milestones that most newborns never need to meet. Like when our babies began breathing with less support, when they started to breathe without support, when they opened their eyes, when their tiny little bottoms had just a smidge of fat, when they reached their birth weight, when they reached 1kg, when they went up a nappy size, when they beat an infection, when they wore clothes for the first time, when they turned off the heat in their humicribs, when they went into open cots, when we had our first touch and our first cuddle, when we finally had the first twin cuddle, when they reached full feeds, when they had a line taken out, when they graduated to special care, when they had their first breastfeed practice, when they had their first bottle practice, the list goes on and on. And with our girls, these milestones didn’t happen at the same time because, even from the very beginning, they have been very much their own person.  

I know we have had it easier than other premmie families. I know that others do and will struggle more. I also know and understand that when we look at our babies, not only do we see their perfect gorgeous little faces, and their deliciously squiggy bodies. We also see warriors. Warriors who fought the fight of their lives and kicked but. Warriors who stayed strong and resilient, even when their parents found courage difficult and at times, near impossible.

bubs and chair

Watching our baby girls fight every day, I would have given anything to see them healthy and happy like all newborn babies deserve to be. These days, when I get frustrated or when the girls have totally exhausted me, I remember how tiny, fragile and helpless they were and how lucky I am to have this crazy twin life! Now that we have our babies home, we have realised that it really doesn’t matter in the grand scheme of things if they have delays or other prematurity related issues. The most important thing is that our children are alive. Whatever it is they need, we will be here to love, nurture and provide. Always. There is no need to be frightened anymore. My babies have given me strength that I never knew I had. We really are the lucky ones.

pool

Being the mother of two extreme prem babies has undoubtedly been the hardest thing that I have ever gone through. In a way though, it has also been an eye opening and amazing experience. I mean, we got to spend an extra three months with our baby girls! And not only have we made our own little family, but we have also joined two others: the multiples family and the NICU family. Families who also know and understand, that even when the days are tough. Life really is a wonderful blessing.

both

Love Terri

 

NICU has changed me

NICU has changed me.

Tonight I was mindfully going through our bedtime routine, listening and enthusiastically singing along to Spotify Acoustic covers, as I changed Dahli into her Pyjamas. India was changed and happily wriggling on her lambswool mat and Dahli was on the change table, her brilliant-blue eyes grinning happily into mine as I sang and dressed her. Soon the song pace slowed and the next artist began to play the familiar tune, Can’t Help Falling in Love.

While we were in NICU, I would hold and sing to my babies for hours, and this was one of the few songs that for some reason, always came out. As it began to play tonight, suddenly Dahli was no longer a  5.2kg happy, chubby baby. She became the tiny, frail, squeaky baby in her humicrib back in NICU. Her body fitted with cannulas on three limbs and a monitor on the fourth, as I changed her micro nappy over her sore, swollen abdomen. She was sick and I was scared. Along with this vivid flashback, inevitably came a wave of emotion that rather quickly, brought me back to present. There she was again. My chubby, little warrior. My baby girl who in the first few weeks of her life, exhibited more strength and determination than I think I ever will in my lifetime. I took a deep breath, wiped my tears  and asked myself, How did I get so lucky? What did I do to deserve such an angel, and not just one, but two.

 

India 4India 1

 

 

 

 

 

 

 

These moments are common.  A simple trigger like a song, a loud beep (screaming monitors), a picture, a smell; I become totally overwhelmed as it takes me straight back to NICU. Not just in the day, but often in my dreams (hello dream jaw clenching again. I told my dentist I was over that habit!). These moments, although insanely emotional, always end with an astounding sense of pride and gratitude for what we have. I regularly remember that some parents aren’t so lucky. Some babies continue their fight for much, much longer than our precious girls and other warriors don’t win their fight; they grow their angel wings.

I know I will never forget how fortunate we are. Not a day goes by where I don’t remember how fragile life can be. Not a day goes by where I don’t think about the families currently in NICU with their bubs too eager to meet the world, battling to stay positive and sane; to hold their world together. Not a day goes by where I don’t remember the nurses and doctors who cared for my babies at a time when I couldn’t. Not a day goes by that I don’t reflect on the fact that our babies were saved. Not a day goes by where I don’t think, our babies are so special and so absolutely amazing.

 

Dahli 2Dahli 1

 

I hold my girls just that little bit tighter every day. I kiss them maybe a little too obsessively. I constantly remind them how wonderful they are. I play, play, play until I have nothing left give, on repeat, all day long. I stare at my babies as they sleep with a deep, overwhelming sense of pride. I sneak back into their room a few more times at night whilst my husband is nagging me to get to bed (daddy’s shift). I scroll through their pictures while I lay in bed, too excited to sleep because I have two strong, gorgeous, lovable twins.

Maybe as a parent without the experience of NICU, I still would be doing the exact same thing. But as a NICU mum, there are always underlying thought processes that help you see the blessing of life a little clearer. The simple things become so much more because you are so, acutely aware that in a moment, life can change; life is so fragile; nothing is ever permanent.

 

India 7india-3.jpg

 

In NICU the mantra was always, ‘One day at a time’. Today that continues to be a useful mantra, although it’s more ‘one moment at a time’ as the life of twins gets busier and busier! Of course there are definitely moments of complete frustration and exhaustion, but then I promptly remember how lucky I am to be a mum and just how blessed we are to have two bundles of complete joy.

NICU has changed me, but I believe it to be for the better. I am not sure if the flashbacks will ever cease or if my girls are completely through the woods, but NICU has taught me how important it is to live life in the moment and to celebrate every little success. And while in NICU,  if my girls have taught me one thing, it is what it means to be brave and strong. As the saying goes, ‘you never know how strong you are, until being strong is the only choice you have’. I know that if I can handle NICU, I can take on anything- just like my determined, ambitious warrior princesses. 

The future is bright and beautiful my precious, baby girls!

 

 

Dahli nowcupcakesUnknown

 

Love Terri

 

To the nurse who told me like it was

To the nurse who told me like it was,

I don’t remember your name, nor can I picture your face, but what I do remember is your no bull honesty. I remember your brazen sincerity as I lay in the hospital bed; veins burning like webs of fire, heart pounding through my chest, arms and thighs bruised from steroids and cannulas, my tummy sticky and gooey with the monitors used to chase my active babies around, and my neck killing me from having to sleep upright, keeping my babies in sight for the nurses. I also remember the relief I felt when finally, a reassuring, firm voice from above (that would be yours) told me, “Honey, these babies are on their way!”

Throughout my whole pregnancy it was like all doctors and other nurses danced around the hard truths. I floated along with my not regular enough appointments, thinking all was wonderful and perfect. I wish I was more informed throughout the whole process and although having my girls arrive so early was extremely frightening, it was also a relief when finally, after almost a week in hospital with nurses and doctors pussy footing around the inevitable, you told me the truth. Thank you for not treating me like an idiot. This is my body, and my babies and I always should be told the truth, even if the truth is scary.  

You didn’t wait for my Dr to arrive (like you were supposed to), you didn’t hold my hand and tell my babies “stay in their bubbas, the world is not ready for you yet”, you didn’t tell me that perhaps things would get better and that maybe I would get back to work and the whole situation could reverse itself, you didn’t make irrelevant small talk. You didn’t whisper in the birthing room corner with the other nurses or doctors about what I feared may be happening. You didn’t care that you broke the rules, not allowing my Doctor to give me the news when he finally turned up. You saw a distressed, pregnant woman, fearing for the lives of her twins, and you told her what she needed to hear- that within the next 30 minutes, she would meet her 27 week old (gestation) babies.

This was my first pregnancy and in just a moment, you taught me a lot. If I do have any more children, or if I find myself in hospital for some other reason, I will be requesting non-sugar coated information. I am not a fan of sugar coating, not in my diet or with my health. I don’t need a pretty picture to be painted of the best possible outcomes, I need all the possible outcomes handed to me. This way I can prepare myself for whatever is to come. Yes, we received some information while we were in this whirlwind, about survival rates and possible disabilities if our babies were to arrive, but it didn’t feel real because no one would tell me that it was likely that our babies were on their way. Maybe I should have figured it out, but when I was deep in this tunnel of the unknown, for some reason, I wouldn’t believe my girls were coming, not unless the words were said by a professional. Just a simple, “it’s likely they are on their way”, or “you should prepare yourself for their arrival”, would have been enough to kick my brain and thought processes into gear, to get my head around the fact that: this is serious, this is very real, I will be meeting my babies soon.

I know the other nurses were all beautiful, caring people (well most of them). But until there was you, I felt like I wasn’t being taken seriously. I felt like it was all a bad, fuzzy dream as my head spun and one day rolled into the next, and the next, and the next. All the while, I imagined that in a day or two I would be on bedrest at home, chilling and watching Netflix. No one would tell me that it was likely that my girls were on their way. No one would whisper the words. True, every day they stayed inside was a blessing, but living in limbo, on a hard, stiff hospital bed, thinking I would return home any day now, was false hope.

So thank you, for giving it to me straight up. I wish I had encountered you at the beginning of my hospital stay. I only met you the morning my beautiful girls entered this world. Now 6 months later, as I reflect on the whole traumatic experience, I remembered you and how somehow, as you handed me the news I had feared, your honesty made everything seem okay. I heard the news; it was go time, and yet somehow, I knew my babies were going to be okay.

 

Love Terri