National Breast Feeding week- My Breast Feeding journey

Today is the final day of breast feeding week so I thought I’d share a little bit about my breast feeding journey. 

With Dahli and India being born at 27 weeks and in NICU and SCU, for a very long time I was not able to try and breastfeed them. They were not strong enough and not ready, plus their CPAP would have gotten in the way anyway! 

It was an hour after the girls birth that my midwife came and offered to help me hand express some milk. I was surprised that I was doing this so quickly. And even more surprised that she managed to help me get enough milk out for my girls first feed! (They were fed through a nasal gastric tube). I think it was about 1ml in total. From this lesson on, every three hours, day and night I would express. At first just with my hands, then with the expressing machine as a stimulator before hand expressing, and then solely on the expressing machine. I would set my alarm for every three hours and expressed day and night. At times I did it next to one of the girls in their humidicrib, sometimes downstairs in my hospital room and then at home when I was finally discharged. When I was allowed to hold the girls I would hold one of them for ‘breast cuddles’ to encourage my milk supply and then I would sit there next to them and express afterwards. At home I would flick through the millions of photos and videos of my baby girls to help me make lots of milk. And I made a hell of a lot. It’s amazing what our bodies can do! I was expressing so much milk, litres a day. The hospital had to freeze some and I got to freeze some at home when they couldn’t fit anymore in their freezer. 

expressing at indias bedside
Expressing next to India’s humidicrib

The girls first breast feeding practice was sucking my milk off a cotton tip. Soooo cute and fascinating. And then at around 31 weeks (1 month old), India was off the CPAP and had her first proper breast feeding practice. She was 1377g this day and it was quite remarkable that she managed a little feed at this stage. I still remember how excited and proud I was. She got quite the surprise with how much milk came out, I remember she threw up on me and herself a few times! 🤣 For a long time we would continue this breast feeding practice as the nurse tube fed her my EBM. 

Dahli didn’t get to start practicing breastfeeding until a little while longer (almost 35 weeks) because she she still needed the breathing support. But finally while on high flow, she got her first practice. Dahli latched straight away and then screwed her face up. She was either shocked or unsure of the taste and then she fell asleep on me as I stared at her beautiful face that after almost three months, I could finally see properly.  Now both girls were off CPAP and able to practise sucking I was able to start tandem feeding. This was super exciting and a huge moment for me. When I learnt I was having twins this was one of the first things I thought about. The twin feeding pillow was no longer just for cuddles, but for actually feeding my babies!

The tandem feeding journey was filled with joy and anxiety, proud and happy tears and sad, disappointed tears. It had far more unsuccessful experiences than successful and it was heartbreaking. Once the girls were in SCU the focus became on getting them to full feeds so that they could finally graduate and go home. I was determined to breast feed. I would breastfeed them and then top them up with my EBM. It was an intense juggling act made easier when my husband was there. It also brought up lots of feelings of incompetency as nurses had to help feed because tandem was not working and they were on the same schedule. I longed to get them home and focus on breastfeeding in the comfort of our own home. But in hospital I was only allowed to practice with them every alternate feed. And then when we could see that the bottle was the fastest route home, that’s what mattered most. 

When we finally got home the juggling act continued but with much less anxiety and stress. On and on for months. I eventually decided to just do breast feeds for bonding and supply purposes because they just couldn’t get a full feed. So I learnt a way to express while bottle feeding them simultaneously. And if one bubba wanted a little settling or mummy time, I’d offer them my breast. One of my fondest memories of this time was having them both on me in the bathtub and them both fighting over the same nipple 🤣 

feeding station
My breast feeding station-twin credible, lap, warmed bottles of EBM, water bottle, TV remote, expressing machine, and of course India and Dahli

 

Eventually the girls weren’t really interested in my breast. They wanted the bottle of EBM and eventually formula top ups when my supply started to run low and not be enough for the girls. A combination of their growing appetite and less time to express. 

I expressed until the girls were 9 months old. My machine wasn’t really cutting it any more, my girls were now on solids and my spare time was spent making them solid food! If I tried expressing as I bottle fed them, they would pull out the tubing! And if I tried expressing as they played, their attention span would dwindle…along with my supply. So I weaned my boobies and put the expressing machine in storage….and I burnt my god damn expressing bras! 🤣 From then on the girls were on homemade, delicious solids and organic formula. I was happy that I had gotten them to this stage, although mummy guilt was also very much present.

 

So that’s my breastfeeding journey! I hoped Reuben to be a more successful breastfeeding story. My supply did actually come in and I was back to expressing again. This colostrum/milk was a gift to the girls from Reuben (which came at a good time as they were very sick). This was an extremely hard and emotional thing to do. I tried to just zone out and not think about what I was doing and why I had to do it. In the end I ended up needing help to make my supply go away and after a few weeks, I got tablets to help stop it. 

Everyone’s breastfeeding journey is different and I believe that all mummy’s make the decision that is best for them and their babies. I have moved on from the sadness and guilt I felt from my unexpected breastfeeding experience. I now know that I was a NICU mummy rockstar and I did absolutely everything I could do to get my bubba’s their mummy’s milk (including the multiple batches of lactation cookies, nighttime googling of lactation foods (hello oats!), many cups of lactation tea and finally motilium to help boost supply!).

Thanks for reading!

Love Terri

Double the Joy

I was asked recently if I have experienced any joy since Reuben’s passing. I was a little confused by the question but it had quite a simple answer: yes. And then the question got me thinking, perhaps there are people who go through similar trauma and loss and for a very long time, they will not experience real joy. But me, I receive joy every day. At first the joy came with guilt. But now most of the time I am able to be present in the joy and not feel bad about it. The joy I am of course talking about is my precious, little warrior princesses Dahli and India. And I think it helpful and the perfect time to write a post about the joy they have been bringing me daily.

26th july

 

We are so grateful everyday to have been blessed with twins. It truely is double the love.

18 mnths
18 months old today!

Its double the giggles, double the smiles, double the milestones, double the poo…double everything really and it is absolutely amazing. I feel that I was destined for this role. It feels natural, it is challenging at times but it is all that I know and I love it every single day. India and Dahli are now 18 months old (15 months corrected). This corrected business means that developmentally, this is where they are. I am not completely sure, but I think by the time they are around three, we can let the whole ‘corrected thing’ go a little.

 

 

So lately, these little girls have been making us laugh and smile and really been holding our whole world together. Let’s talk about some of these things that make me feel so grateful and happy every day.

Twin talk

Twin talk really started when the girls were in NICU. I remember feeling so proud yet devastatingly disappointed and upset that the nurses heard it first. One night the girls began calling out and responding to each other in their humicribs from opposite sides of their room. The nurses were telling me how cute and yet how naughty they were chatting all night long. Hehe. Such cheeky girls from the very beginning! It wasn’t long though until I heard it for myself. The video below shows one of my twin cuddles with the girls where they sound like little lambs chatting away. Total heart melters.

Today their twin talk has changed a lot. No longer do they speak in their little lamb prem voices, but they babble expressively in an undecipherable language. Usually one takes the lead and talks the most and the other responds here and there. A few days ago, India was sharing her sultanas with Dahli and telling her to say ‘ta’. Tonight in the bath they were both cuddling their bubbas and India let hers go ‘bubba’?! Dahli found India’s bubba and kindly gave it back to her. Sometimes I look at them having their conversations in disbelief. When did they get so clever?! I have been trying to get their conversations on video for a while now but they stop as soon as I try! So I did my best.

Sharing

So I already told a little story above about India sharing her sultanas and there are a playquite a few other sharing moments. They often like to pass food to one another in their highchairs or steal from one another trays. Haha. Apart from food, the girls have security bunnies and security lambies. Lately if Dahli has been getting upset, India has found her dummy and given it to her and also given her the lambie or bunny that she was holding. Soooo cute! One time she instantly got upset and wanted her bunny back though! Most of the time though, the girls don’t like to share. India is the boss at the moment and she wants everything. Dahli is adapting and beginning to not get bothered if India takes her toys…but her tolerance depends on how tired she is.

 

Toddling around

As the girls were born so premature, I had in my mind that they would walk at 15 months corrected. And guess what! I was right!! The anxiety has always been there about milestones-smiling, rolling, sitting, crawling…would they ever get there? And if so, when?? Walking seems like for now, the final milestone and they have stood up to the ‘statistics’, toddling their way into a whole new phase, completely unaware of the trauma they experienced in the first few months of their lives and oblivious to the fact that they are mummy and daddy’s amazing little miracles…suddenly getting too big too fast! I could just sit and watch them toddle around all day, it still takes my breath away the pride I feel.

Kissing and cuddling me and each other

Oh my gosh this has to be one of the best things about twins. Double the affection! Dahli and India can be so kind to each other. Cuddling and kissing and laying on one another. At the moment they cuddle and kiss on cue…its unbelievably cute! And then at other times one tries to ride the other without permission which of course ends in screaming and mummy and daddy trying not to laugh. The first time I ever showed the girls Reuben’s little urn, they both kissed it. So sweet and in-tune. From that day, each time I put the girls to bed I say goodnight to the girls and to Reuben and they all get a little kiss (at the moment Reuben’s urn is on a little shelf in the girl’s room so that he can be with his sisters). Sometimes I get his urn down, and without fail India always goes in to kiss him.

The girls were never really cuddly, loving babies when they were littler. I always wondered if its because they spent their first three months of their lives in an isolette or hospital cot, away from one another and only having one or two long cuddles a day. It could have been that or perhaps just their personalities. It made me sad though that when they got wriggly they wouldn’t want to have many cuddles. But literally, since the day Reuben was born they have been the most cuddly babies ever. They always want me and are always up for a cuddle, snuggle or kiss. It is absolute bliss.

mummy snugglesunicorn snuggles

Mimicking us

Already we are having to be careful of what we say because we have double the chance of being mimicked. Its funny the things the girls start to say that we don’t even realise we must say a lot. India’s favourite is ‘uh oh’! At the moment. And the other day Dahli actually mimicked daddy’s ‘f*#! that!’ Haha. I feel like they are trying to show each other how clever they are with their words at the moment.

Playing Puppies

This one is hilarious. The girls absolutely love our dogs Yogi (happy and energetic 5 year old boarder collie) and Bongo (old and cranky 13 Year old Maltese Poodle). They love to mimic them, pat them, chase them and having Yogi drag them along by their socks! The girls go under their highchairs after they have eaten and help eat up the scraps they dropped with the doggies. They also like to get down on their tummies and pick the food up from the floor in their mouths just like their big brothers. Hehehe. Great for the immunity no doubt. And a favourite toy when playing outside is the dog bowls (I know…disgusting but these girls can just be too quick for me!). They quite like to clang them together and to sit in them (their little bottoms sit quite perfectly inside the bowls..it actually looks like they are trying to go potty!).  I look forward to watching their doggy bonds continuing to grow.

Doing Makeup

My baby girls love to come and sit with me when I do my makeup. They pull everything out of my makeup bag and put it all back in. Although yesterday I had taken my ugg boots off and they managed to put most of the contents in them which I hadn’t realised until they were napping and I tried to put my uggs on. Sometimes I put a little lip gloss on them and they get so serious about it, watching as I do their sister and leaning forward ready for their lips to be painted too. hehe.

These little, big things and so many more twin antics are my daily dose of joy. But grief is weird. It is always there, it never goes away. Its like this constant bubble that you are living inside from which you do your best to live, to love, to laugh, to carry on with life. All the while knowing that as shit as this grief bubble is; as much as you wish everyday that you could wake up from this nightmare and bring your baby back, You are still so blessed, you are still so loved and you are a god damn, freaking Warrior Queen.

Love Terri

matching

 

A million questions

I lost Reuben at 22 weeks. One more week and they would have tried to save him. But at 22 weeks my baby’s definition -insert dr speech marks here – was “not-viable”. I fought for him, but it wasn’t enough. They said they would check his weight and if he was big enough they would try and save him. But it was too late. While waiting for this ultrasound to check his weight, I went in to labour. He was born about 15 minutes after the ultrasound was planned. A million questions go around and around in my head every day. Some far too raw for me to have the strength say, let alone write down. But here are 11. 11 questions that may never be answered. But 11 questions that I will be asking when I finally have my follow up specialist appointment (an appointment I had to chase up by the way. No planned 6 week appointment for me unless I actually pushed for it). 

So here are just 11 questions that burn a hole in my heart daily:

  1. Would have Reuben been in pain when he passed away? 
  1. I went private with my twins and it was a waste of money as I didn’t get the care I needed and my Dr was complacent and in my eyes, a reason my girls came so premature. So this time I went public. I had learnt that public is where NICU is and all the resources for preterm birth. But when I was admitted this time, there was a lot of waiting around. Waiting for a Dr, waiting for my ultrasound, waiting for my pessaries, waiting for my cannula and antibiotics. Realistically, had I not have had to do all this waiting (ie if I had a private Dr) could have my baby boy survived? 
  2. Why was I and my high risk pregnancy referral not taken seriously? Why was I not a part of the high risk program? The program I learnt about after it was too late. Especially as not only was I a ‘high risk’ pregnancy, but I also fell pregnant in under a year after having twins a 27 weeks.
  3. Why did my body let my perfectly healthy baby boy go? Why did I go into preterm labor again?
  4. What were the results to the 10+ blood tests I was tortured for after everything? It’s been 6 weeks and I’ve been told nothing. 
  1. Is there something I could have done to have stopped this happening? Or something I might have done that caused it?
  1. Did falling pregnant so soon after the twins have anything to do with why this happened? 
  1. Is it safe for me to have another baby?  
  1. My drs appointment was changed to a week later: The Thursday after I gave birth. If I had attended this appointment at the original time (the week before), is it possible that you could have seen something? And if so, could we have done something to save my baby boy?  
  2. Whatever is wrong with my body, is this something that I could pass on to my girls? Could they have the same problems that I have? 
  3. Why did I by some miracle fall pregnant naturally, if it was just going to be taken away from me? (Okay, I won’t ask this one of the drs but I think about it all the time).

These are hard hitting questions. And I know some won’t have answers right now or maybe ever. However, asking these questions is going to be part of my healing journey. It’s going to be extremely hard. But I’m going to do it. If I don’t, I will regret it. I know none of these questions will ever bring Reuben back but I need to at least try and get some answers. I need to ask these questions along with many others, to help me move forward, to grow stronger and to heal. 

I miss you every day Reuben. Sometimes, in a blissful moment, I forget that all of this has happened and you are still here. But then I remember and it breaks my heart all over again. I love you so much. 

Writing is also part of my healing process. I write a lot. Some things I share, some things I don’t. I was not sure if I would share this piece. But then I began to think, if there is just the slightest chance that this could help someone else, then why not? People who don’t want to read this, won’t. People that want to or need to, hopefully will. I may never know, but it this could help someone who has gone through, is going through or will go through the trauma, heartbreak and loss that I have. I have had many people thank me for being so open and vulnerable with my journey. And also some other amazing angel mums who have reached out. I haven’t shared everything. Just when the time comes and I feel ready, I have shared parts of my journey and I know already, that I have helped others. I find comfort in this. Helping others also helps the healing process.

Love Terri

Untitled

I’m not okay. I’ve never been so not okay in my life. Once upon a long time ago my life was so simple. But everyday of my adult life I had honestly been so appreciative of all that I had. Of the places I went, the beautiful people I met and the amazing experiences I was given. 

Today though, I feel that in a past life I must have been a god awful, evil bitch. Simple was a lifetime ago. Woe is me. Although I still realise I am so blessed (hello gorgeous Dahli and India and my amazing husband Luke), I too feel so broken, so numb, so incomplete. 

Before I lost our baby boy Reuben Luke, I was in the middle of a tongue in cheek blog post about being pregnant again with 15 month old twins. The reactions I was getting (mostly laughing in my face), and the passable bump as most people thought I was just still fat from having the girls. How ridiculous that these were my thoughts when in a breath, it could all be taken away. 

How crazy it is to think how happy and complete I felt just moments before this whirlwind began. We had two gorgeous, miracle bubbas and another on the way! One minute I was a healthy and happy mummy who had a healthy, happy baby growing in my tummy. And the next minute, my body let him go. 

I won’t lie, I was a bit scared about having another with two babies already. But I wanted Reuben so bad. I had painted his future. I had visualized his homecoming and the days, weeks, months, years ahead of us. He was to be a normal, healthy, full-term pregnancy. I was already seeing him next to my bed in his Moses basket. I had seen him playing with our baby girls and had been planning how to teach Dahli and India to be caring and gentle with him. I had also already planned him to be my successful breastfeeding journey. We were so close, yet so far from when we should have met him. A million what ifs, a million tears, a world much sadder without our baby Reuben. 

I usually try to have a positive, final conclusion to my blog posts. I don’t have the brain for this right now. I’m learning to just be with my grief. To not rush it. The triggers and waves of emotions will and do come unexpectedly. For the moment I am not okay, and that is okay. I am though doing my best to be strong for my baby girls. My smart, crazy, beautiful twins who aren’t silly. They know mummy is hurting. They know something is up. So while I am not okay and it is okay, I am thoroughly enjoying lost of cuddles with my sweet, sweet baby girls. 

Please reach out if you have/are experiencing something similar. I have joined yet another family. Although not a family I had ever dreamed of being a part of. Us Mummas to angels are the only ones that understand. And together, we can support each other through the dark times. I don’t know how, but I know that we will. 

And in the meantime, I am off to Fiji with my family to escape and try and heal together.

I love you so much baby Reuben Luke and I am so so sorry.

Love Terri

 

 

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