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Maggie: A quick trip to Launceston meant a visit to the monkey park on a cold winters morning. It was nice to watch the girls wonder and laugh at the antics of the monkeys. To play in the last of the autumn leaves. To watch the ducks in the pond. Especially after the events of the past few days. 
Elisabeth: Her cutest phrase of the week is when she has a runny nose she tells us "I need a tissue for my bless-you nose". Both photos were taken by Rob.

On Friday the girls were feverish and drowsy all day. I rang Rob at work and asked him if he could come home a bit early as they needed extra cuddles. The girls were sitting on Rob's lap on the window seat nibbling on some chips. I looked at Maggie and realised her eyes were all glazed and she seemed to be staring into space. I blurted out "there's something wrong with Maggie, she's having a fit", then I thought she was choking "she's choking, quick".

The next moments are a horrible blur, and even now days later, if I close my eyes I see it unfolding again and the sheer horror and desperation returns. Rob picked her up and started to pat her on the back to try and get whatever was choking her out. By now she was lifeless, her eyes closed, her face white except for her blue lips. She wasn't breathing. In that moment I thought "oh my god she's dying, we've lost her". Rob was telling her "Maggie, come back, please." Rob snapped me back into action by telling me to ring 000. I am slightly embarrassed to admit that after asking for an ambulance and giving our address, I screamed "My baby is dying, she's not breathing". The lady, Flick was lovely, and calmly asked what was going on, I said she's choking. She said to tell Rob to try and clear her airway, and that's when we realised she had her jaws clamped shut, and that my first gut reaction was right, she was having some sort of seizure. We were instructed to put her down, which goes against every instinct when you see your lifeless child, not breathing and blue. But after a few minutes, some of the longest in my whole life, Rob said "she's breathing, her colour is returning."

Flick stayed on the line as the ambulance was still 20 minutes away. Maggie was now moaning and looking completely dazed, but she would try and look at us when we said her name. When the paramedics arrived she was a little more lively when she worked out they were here to see her! They took her temperature and it was 39.2degC. I headed into hospital in the ambulance with Maggie, while Rob followed us with Lizzie. After a snooze in the ambulance Maggie became quite alert in emergency, as she suspiciously watched the nurses and doctors who asked questions and checked her out. She was quite happy with the hyrdrolyte icy pole though! Luckily her temperature had dropped quite a bit, and they could find no other suspicious symptoms or infections, so whatever virus the girls had picked up and caused the fever spike that brought on the febrile convulsion.

The Paediatrician talked us through what had happened, how likely it was to happen again, what to do if she did have another convulsion and told us that as scary as it was for us, Maggie had suffered no long term damage. Unlike what I initially thought, that I should have been giving them paracetamol all day (which I hadn't) he reassured us that might not have reduced the fever or even prevented the convulsion. He gave us the option of staying for a few more hours to observe Maggie, but he was more than happy to discharge us. We decided we were ok to take the girls home to rest. I stayed up all night next to Maggie, just stroking her face and watching her breathe. The next day both girls were much improved, you wouldn't have known we had experienced such a scare.

In those moments when we thought Maggie was dying, I remember thinking, why? How could she survive all that happened to her with Twin-to-Twin-Transfusion Syndrome, her premature birth and her numerous scares during her NICU stay and die now? How could we lose her now? Life has no meaning without her. For me. For Rob. For Elisabeth. I was taken back to those times when they were so tiny in the NICU, when we were forced to consider their life, their suffering, and yes, the possibility of their death. But back then when we watched Maggie set off every alarm on her monitor, as she stopped breathing, her heart beat flat lined and her oxygen levels dropped. We could step back, heart in our mouth as we watched the Doctors and nurses run to her crib and begin working on her. I felt so helpless on Friday night, so isolated from professional help.

So as you can see, an outing to the park to watch monkeys was just what we needed.

Joining in with Jodi's 52 portrait project at Practising Simplicity.

How old are you? Two!

Nearly a month late, but a little post to remember Maggie and Elisabeth's 2nd birthday celebrations.

I got excited mid year, and was planning an elaborate Teddy Bear picnic party for the girls. But then realised the girls weren't really particularly fond of a teddy yet. Then I read a post somewhere about trying to keep children's parties simple which struck a chord with me. Thinking about it I thought better of my elaborate plans (especially when it is so close to Christmas), and decided to pare it back. I kept the invite list short (family and a few close friends), and reduced the decorating to some fresh flowers from our garden, a few garlands of honeycomb decorations (that I already had) and helium balloons. The menu like-wise was simplified to bbq chicken wings, home made burgers and chips, and an ice cream cake.

Their actual birthday fell on Friday this year, so I organised to have the day off work to spend the day with them. The day before I sent along strawberry cupcakes with them to celebrate with their play mates and carer at family day carer.

On Friday we woke up early enough to ensure we could let them open their gifts from us, which we had hidden under their cot! We sent them off to find them, and they were highly excited to see their new dolls. Rob had to head off to work, so we had a morning of playing together, then after lunch we headed into the city to pick up Rob and take some brownies to the nurses at the NICU.

Usually when we visit we just greet the nurses in the foyer, but one of the nurses (who was at their birth actually) whisked Maggie off to meet some tiny babies. Maggie was intrigued and as we peeked into a humidicrib at a small prem baby, I started crying, much to the surprise of myself and some of the nurses. He seemed so small and fragile, and combined with the all too familiar beeps and alarms, I was taken back two years, to the feeling of fear, as we dared to hope we could bring home two healthy babies. The nurses then told me that the baby was twice the size of my girls when they were born! After chatting to all the nurses on duty, and having a family photo (the girls refused to smile- I wonder if they remember some of their experience in the NICU?) we headed off to our car.

As we left the hospital via the air bridge to the car park, I quickly took a similar photo to the one I took the day we left with the girls. In the original Rob was looking down at a baby carrier with both girls tucked in it together! The new version the girls insisted on walking across themselves, but Rob had the same expression, so proud and in love with his youngest daughters.

The next day was warm, with a perfect blue sky. After heading into the city to collect the best brioche buns from Pigeonwhole bakers, and the meat, we headed home to get ready. Cleaning, and setting up the party area down on the verandah of the laundry hut. We had a quick break to feed the girls lunch and then put them down for a nap. Rob prepped the burgers and potatoes, and I quickly decorated with the garlands of mini honeycomb paper balls. We inflated the helium balloons together, including two jumbo balloons, the girls woke up and immediately started playing with the balloons!

The run down to party time, was relatively smooth, with enough time for me to bathe the girls and dress them up in their new outfits, and even for us to have a shower (one of us is usually in the shower when our first guests appear).


They were a bit overwhelmed by all of the visitors, but excited to see their cousins and a friend's baby. We sat around in the warm late afternoon sun, the adults drinking cider whilst the girls opened their gifts and Rob cooked the chicken wings. These were quickly devoured, and then followed by home made pork and apple burgers on the softest brioche buns from Pigeonwhole Bakers. After a little break for bike riding we lit the candles on their Neapolitan ice cream cakes. The cakes had three layers of homemade ice cream, baci (nutella) chocolate ice cream, vanilla with glace fruits and pistachios and raspberry.




The guests headed home not long after, and we took two tired but happy girls to bed.

Day 11 - On this day last year

Today we have been fairly lazy, a late trip into the city for  Pigeon Whole bread and the best doughnuts, and meat from our favourite butcher. A chicken is roasting in the Weber as I type. So there were limited opportunities for a new photo.

We often play this game just before we go to sleep. Rob and I will sit in bed and scroll back to a year ago on my phone camera roll. We giggle at how small the girls were. How we marvelled over the milestones of rolling over and sitting up. It never gets old does it? Watching your children grow up and change, and yet at the same time you realise they have been the same little characters all along. It is particularly meaningful to us given their rough start to life. I can still go back to those terrible gut-wrenching, heart-aching moments when we had to consider one or both of them dying in the NICU. I hope that we always treat every day with our daughters as a gift, no matter how tired we are, or how trying they are!

So I scrolled back in Lightroom to find these photos of the girls exactly a year ago.


The October #huttwins monthly portrait in black and white. Maggie on the left, Elisabeth on the right.

The girls on the play mat, Elisabeth in the foreground, Maggie at the back.

Maggie

Elisabeth

Thanks for indulging me in that trip down memory lane.

The indecisive weaner

I opened up the deep freeze in the shed this morning, and it is still full of carefully labelled plastic pouches. Reading the dates and times bring back with surprising clarity my daily routine at the time. That first express before breakfast. Day time expresses at the hospital in a tiny room. Pre-dinner express before a small pre-dinner drink. The final express before bed, and my least favourite the 2am special to keep the milk production going. Most are now more than a year old, which means technically I can no longer defrost and use them for feeding the girls. I should throw them away. But I can't quite bring myself to do it yet.  It is like a frozen time capsule. 200 hours of my life. Some of the most stressful moments I have ever experienced seem to be invisibly linked to those plastic packets.

Is it time to wean? A question that is swirling around in my mind at the moment. I have been producing milk for nearly 15 months, feeding the girls myself for 11 months. I always assumed the girls would self wean. That this decision would not be one I would have to contemplate or make.

I had not considered long term breast feeding before they were born. I assumed that feeding twins might not last that long. It would be too hard. I might not produce enough milk. I wasn't going to beat myself up if it didn't work out and we had to bottle feed or use formula.

My return to work hasn't brought on a sudden weaning. Much as I read that this could occur. Instead I am expressing twice a day and the girls drink, albeit reluctantly, from bottles when I am at work. Seems funny to have gone full circle and have the pump and bottles out again.

If you ask me at 3am I will say yes, I have to wean. They are waking me up between 1-5am nearly every two hours, and feeding for comfort. Unfortunately now they have top teeth, it is of no comfort to me. Their latch slips in their sleepy state, and those razor sharp new teeth drag down causing me to yelp out loud in pain. Honestly, it makes me very grumpy and they are not very happy either. Rob takes them after I try to reattach them properly a few times and rocks them to sleep.

Now I know that part of this problem is the girls sleep settling needs to be separated from feeding. Yes that is easy to accept in theory. Trying to do it in practise when we are both tired and desperate for the cries of one girl not to wake the other is another matter entirely. We tend to go with the flow when it comes to parenting the girls. Although we loosely have a routine, we don't enforce it, although perhaps sometimes we pay for skipping a nap, or delaying their dinner!

But during my days at home (I am only working five days a fortnight), I happily feed them during the day. They latch on much better when they are not half asleep, and it is so much easier than trying a bottle, sippy cup or normal cup. Weaning doesn't even cross my mind. 

I think sometimes breast feeding the girls is my last connection to those early days in hospital. It was my job. The one chance to be their Mama, sustaining them and helping them grow. Amongst the artificial, busy and clinical environment of a neonatal intensive care unit those moments when we practised feeding I really felt like their mother. I could close my eyes and ignore the beeps and alarms and nurses, it was just us, doing what we were meant to be doing; bonding, forming a relationship that had been paused because of their early and scary arrival. Maybe I need to shed a few last tears and move on to the next stage with Maggie and Elisabeth.

So where does that leave us? I suspect we'll muddle through for a bit longer until they are 12 months corrected (March 20), then wean the night feeds, I may keep up the day feeds a little longer before encouraging them to drink out of cups.

How did you wean?

How did it make you feel?

A new year: welcome 2014

I meant to write a big post looking back at our year. I have been gathering photos into 15 second Flipograms for Instagram and if I can work out how I will try and load them up here as it summarised our year so succinctly (I managed to select only 170 out of the 12,000 we took last year!) Here's a quick summary.

Last year on New Year's Eve I posted a selfie on Instagram with the following caption.

Me. Last day of 2012. Mama of our two gorgeous girls. Wife of the most dear husband. Owned by two furry friends. Happiest at our home, the hut. Bring on 2013, one day at a time. Happy New Year friends.

2012 was a tough year for me. Ending of course with the girls' birth. Only 19 days into their hospital stay I can look back now and see I was scared, but trying to count my blessings at that moment. I knew 2013 would be hard, but I can also see the determination in my eyes and words. 

2013 was hard. We spent the first three months commuting to hospital to see our girls, and then at the end of the day we had to walk out the door and leave them there. The rest of our life was put on hold, our focus entirely on those two tiny girls and their daily improvement and growth.

I took my own advice and got through each day rather than trying to look forward to their homecoming day. I knew there was no point in setting a date, I could end up disappointed. So on that final day when the nurses (who had become our friends) told us we were free to go home, Rob and I were overcome with a range of different emotions. Joy, relief, sadness, fear, disbelief, excitement. You could feel all the tension and worry that had been bottled up for 112 days be released as we said tearful goodbyes to the nurses. I could not have gotten through those long days at hospital without Rob. 

As we walked out the hospital via the air walk, I quickly asked Rob to stop. I snapped a photo that I used to announce our homecoming on Instagram, Facebook and here. It is my favourite photo of 2013. We were overwhelmed by the comments and support as our online friends expressed their joy as they shared the feeling of relief. They had followed our hospital journey since Maggie and Elisabeth's birth day, and knew, perhaps even better than some of our real life friends, what we'd been through to get to that day.  Most people we had not met (and may never meet), but we could tell how heartfelt their comments were.

The rest of the year has been spent at home. The hut is a beautiful home, and I have now spent each season there with our daughters. Tending to those needy days of newborns in autumn. Frequent feeding and nappy changing. Two tiny babies sleeping at the same time!

Watching them start to become aware of their surroundings during winter. Those first smiles and the triumph of those early milestones of grabbing toys and rolling over. My days getting busier as they slept less and rarely at the same time. 

Come spring, and the lengthening daylight hours saw me chasing two increasingly mobile babies around the living room. A play pen became a necessity. But despite the busyness, we watched in delight as they prepared to crawl and finally did, pulled themselves up on furniture and sat up on their own. Elisabeth led the way, but Maggie was not far behind. 

Come summer, eating solids three times a day takes up a lot of a normal day. Providing a few options and helping a little (increasingly less) then cleaning the girls, their high chairs and the surrounding area is quite time consuming. But we are pleased to see them enjoy food. Favourites include meat, buttered sourdough crusts, sugar snap peas, cheese (preferably French chèvre) and peaches. They love a bath now, we usually do it after breakfast as they tend to be in a good mood and enjoy it. Lots of splashing, excited squealing and wriggling.

Of course December was a time of celebration, their first birthday, and first Christmas at home (see my recent posts to read a recap of those days). With Rob on holiday we have been going out a little more. To the dog beach, the Taste of Tasmania, shopping. The girls keenly take in new surroundings, although they weren't impressed with the noise at the taste!

We had a very quiet New Years Eve, a dinner of BBQ'd lamb and a bottle of Jansz Rosé.

I'm not really one for new year's resolutions, but I think my words from last year are just as relevant this year; bring on 2014, one day at a time. 

I welcome 2014, and look forward to new growth and experiences, to increasing love and joy. 

Birth day

Today the girls are one! They woke me around 4am for a sneaky breast feed, and I kept both girls in the bed between us. I slept right through the time of their birth (5.54 Maggie and 5.55 Elisabeth), but I was happy as I was snuggling them close. So different to last year when we didn't get to hold our babies at all. Thank you to those of you who have been reading along and commenting, this is it, the last chapter of their birth story.

The sleeping tablets didn't work as well as previous nights. I kept waking every 15 minutes to breathe through a contraction and then I'd doze in between. I honestly thought in my befuddled state that they would calm down. Although I was alone (I didn't bother the midwives often that last night) I didn't feel lonely. The babies were wriggling around like crazy (due to the contractions), I only realised the other day that term babies would be too big to wriggle the way they did that last night. I always found their movement a comfort. Perhaps the other big hint that this was it, was that I was leaking colostrum all over the sheet. 

Around 1am I did ring the bell as the contractions felt a bit worse. The midwife gave me some panadeine and a heat pack, she stayed with me to feel how they were progressing, and said she'd see how I was at 2am. Meanwhile I had texted Rob. As we only have one phone he had borrowed my mother's old mobile. The buttons were too small for him to text very well. It made me laugh because every time he wrote xxx it came out www. I was willing the contractions to stop, but instead they were just as strong. I toughed it out, throwing aside the useless heat pack and curling up on the bed whenever one hit. 

Just after 2am I sent Rob another text to say they were not getting worse but weren't that nice either. He asked if he should come in. Why I didn't say yes then I'll never know! The midwife went to discuss my progress with another doctor to see if it was worth calling my doctor. I had not lost any fluid so I still thought they would calm down. 

By now it was impossible to doze between contractions, I was trying to be brave. The babies were still kicking like crazy. The contractions then went up a notch, they started getting longer and more painful without a break. I still didn't call Rob, I didn't want him to worry. Just after 4am I sent him an understated text - getting more frequent, can you come in soon. He replied ok. I didn't realise ok meant to Rob have a cup of coffee and a leisurely shower and shave. Perhaps we should have discussed my texting code. Because to me it meant come immediately! 

Lying down and breathing was doing nothing now. I could feel the contractions building up like a wave until it was intensely painful. I remember walking around the room and leaning over the bed quietly moaning. Then suddenly I felt a pressure deep in my bottom. At first I thought I had to go to the toilet and even tried. Then I suddenly remembered the day before one of the questions my Doctor asked was if I felt a pressure feeling. That's when I finally admitted this was it. I rang that bell and told the midwife, who turned and ran out the door to get help. 

Two other midwives came back with her and a wheel chair. By now the pain and pressure was constant, and when they asked me to sit in the wheel chair I initially refused. But somehow I sat down and was whisked back into a delivery room. They had already rung my Doctor. They helped me onto the bed, removed my knickers, and one of them did an internal exam as gently as she could. I remember the lamp at the end of the bed didn't work, so it was all dark. But I could see her face and heard her whispering to the others that I was fully dilated and she could feel Twin B's head. Then she told me to shut my legs and whatever I do, not to push. Stranger words I'm sure haven't been spoken in a delivery room. This I admit felt impossible, your body just takes over and does what it has to. But I gritted my teeth and tried. The midwife who had been with me all night asked where Rob was. So I rang him (I later checked my phone the call was at 4.57am), understated was thrown out the window as I gasped "get here now", followed by "where are you?" He told me he was just driving through Snug. Still a 30 minute drive from the hospital. My heart sunk. I wanted him with me, I was so scared. I didn't want to face their birth alone.

The mood of the room quickly changed and it suddenly became full of people. I was very relieved to see my Doctor. She looked very serious, even more than the other day. The lights were thrown on, and it became crazy, it felt so surreal, as if it was happening to someone else. They reattached IV lines and gave me another massive dose of magnesium sulphate. Perhaps telling about the pain I was now in, was that I didn't feel the burning this time. The other had saline reattached. They gave me an injection to slow the contractions, and those fetal heart monitors went back on. The midwife told me to breathe through a contraction rather than tense up and squirm and quickly showed me how to use gas. 

Other people were in the room, an anaesthetist was at my head asking me all sorts of questions I could barely hear or understand. On the other side my Doctor put a consent form in front of me to sign. The anaesthetist was still talking to me, but I wasn't taking anything in. I had to swallow some foul stuff to stop me choking. I could see NICU nurses checking the warming beds. I was shaved and a catheter was inserted. Then as suddenly as they appeared, everyone started leaving for the operating theatre upstairs. My bed was wheeled into the corridor, and as we went past the midwife was grabbing towels and oxygen canisters and placing them between my feet. I thought that was odd at the time, but later a NICU doctor told me when they were paged they were told I might give birth to one of the twins in the lift on the way to the theatre!

I don't actually remember any more contractions from now on. I was exhausted and kept looking for Rob. The midwives rushed me out of the lift and wanted to wheel me right into the theatre, saying to theatre nurses as they pushed there was no time for normal protocol. But in the rush it wasn't actually ready yet! As we waited briefly the anaesthetist's nurse let me know that they still weren't sure if I would be having a general or a spinal. I really wanted to be awake at least, but I knew it wouldn't be up to me. They said if it was a spinal when Rob arrived they'd bring him up. I desperately wanted him to get there, but perhaps all my silly bravery would mean he would miss it. With all the commotion I had lost track of time. 

Finally I was allowed in, I remember the huge lights above the table. I was shuffled across to the table, and noticed it was getting light outside. I saw two humidicribs, each with a NICU Doctor and nurse. The main NICU Doctor came and introduced himself. I could see my Doctor and another obstetrician in scrubs prepping. I was asked to sit up and hunch forward for the spinal tap to be placed, because my gown was open at the back it kept slipping off. One of the NICU nurses rushed forward to hold it up to preserve my dignity. I felt so defeated that I didn't even care if I was naked, and tried to tell her I didn't care. I don't remember if someone told me or I looked around and saw him, but I suddenly saw Rob standing in the corner in blue scrubs and face mask, his blue eyes fixed on me. I was so relieved. 

I had done all that I could to stop their birth. Endured more than I thought I ever could, but in the end I had to surrender (thanks Jodi for that totally appropriate word). I could do nothing more to protect my babies from their early arrival. It was now up to the NICU doctors and nurses, and the babies themselves. 

They gently laid me back down, checked I had lost sensation and hastily put up a curtain (which kept falling against my face). Rob sat next to my head and held my hand. Then the operation started. It wasn't long at all and I heard my Doctor ask Rob if he'd like to stand up and see the first baby's appearance, and I felt excited. She joyfully announced "It's a beautiful baby girl", and as Rob's tears fell on my face, I quietly wept as I heard Maggie's tiny but determined cry, and I felt it. A love stronger than anything I had ever felt, particularly for someone I hadn't even seen, as I became a Mama. One minute later the Doctor asked Rob to stand up again and Elisabeth entered the world screaming just like her sister, and another wave of love washed over me for my second daughter.

I have written before about meeting the girls later that day. Despite all we had been through already, we knew it was just the beginning of a long stay in hospital for our daughters. Unlike their birth day a year ago, I only have tears of joy today. There is no sadness or fear. Just love, wonder and awe for our girls and how far they have come. We are so proud to be parents of our Maggie Simone and Elisabeth Hazel.

Another day, another needle.

Sometimes I thought maybe we could prolong the pregnancy another week, we were after all on day four in hospital. With each day I survived we slowly added the days to my gestation 25w4d, 25w5d, on a white board in my room.

Speaking of my room. Originally we had booked into a private hospital for their expected birth date in late February, but as only the public hospital in Hobart has a NICU we really didn't have a choice. So I was given a rather spartan private room (this photo was taken after their birth hence the pump). You may have noticed the lack of photos, we didn't bring a real camera into hospital. I didn't have a compilation play list of music to soothe me during labour. I hadn't even packed a suitcase for hospital, so poor Rob was sent off to shop for all sorts of things! As news spread around our family, friends and work colleagues, my room did start filling with beautiful flowers, a stark contrast with the scuffed up walls and stained ceiling. 

On Tuesday morning, however, I woke up in the delivery suite. They detached my IVs, but left the cannulas in just in case. 

Our favourite part of the day was the ultrasound to check on the babies. We headed off to radiography not long after breakfast. The babies were still doing well, the TTTS had not gotten worse (there are four stages, depending on the severity of the symptoms, the babies were still only stage one). But my Doctor was keen to perform another amnio reduction later that day. 

We headed back to the ward for a rest and some lunch. Rob even helped me have a shower. It is amazing how quickly muscles disappear with only a few days of bed rest. I laughed at my reflection in the bathroom mirror, a huge belly with little skinny arms and legs. 

I was still having the occasional contraction, but my Doctor arrived and got ready to do the fluid removal again. She decided to use a slightly bigger needle and syringe so the procedure would be faster. This time there was only my doctor, Rob and a nervous midwife in the room. Knowing what I was in for this time and not being in as much physical discomfort from the pressure of the fluid made me a little nervous. If I thought the ultrasound they used on the first day was old, the one she had to use the second time was even worse. But she carefully guided the needle in. Once the needle was through my skin I could feel it go through into my uterus. The pain was exquisite and shot through my body, also every time I had a contraction (they didn't happen the first time), it would cause the shooting pain again. 

To make matters worse baby A was awake and kicking (the needle is actually removed but a tube was in it's place), we could see it jiggle on the outside! The midwife left after a bit so the three of us chatted about life, almost as if nothing unusual was happening! We also discussed the Caesarean section she planned to do. The stress of being birthed naturally would be too much and too uncontrollable for the tiny babies. So when she decided it was best I would be prepped for surgery. 

After an hour I realised that I had been lying on a join in the delivery bed, right where my hip was. It was getting increasingly sore, but I wasn't allowed to move! I couldn't wait until it was over. She went as quickly as she could, removing another two litres over two hours. Finally the equipment was removed, a welcome but painful feeling. My Doctor happy that it had gone well, and the babies were ok, packed up and left me to rest. I was returned to my small room, and the contractions kept coming. After dinner, despite ongoing contractions I sent Rob home. He was tired and couldn't sleep in my little room anyway. But I felt the same as the day before so I didn't think the babies were arriving any time soon. I took a sleeping tablet and tried to sleep. At first it worked.

Is today the day, or not?

I woke early, the past few days caught up with me, and feeling alone I cried. I cried that at best they thought the babies would be born within a week. I cried that my pregnancy was ending before it really got going. I cried that we had no idea if the babies would survive, and if they did what their quality of life would be. After a few moments I pulled myself together, washed away my tears and got ready to face another day of trying not to give birth.

The midwives came in for a morning check of me, and the fetal heart monitors were attached. I had felt both babies kicking, so I wasn't that worried when as usual they could only find one heart beat. But the next thing I know I was being rushed down to Radiography to have an ultrasound (I was booked to have one later that day). The radiographer was pretty sweet and told me straight away they were both alive. The head radiographer came in as well as I had been rushed to the top of the list. Apparently the midwife had told them they thought one of the babies was dead! My bravery slipped and my tears returned. Rob and my Doctor (who they had obviously sent for too) appeared and I felt so relieved to see them both. She reassured us that although both babies were still doing well, the fluid imbalance was building up again, so she would try another amnio reduction the next day. She also decided to have a chat to the midwives and ask them to stop trying the heart monitoring as it was causing everyone more stress than it was worth. She was happy if I could feel the babies moving.

I was returned to maternity to rest and eat lunch. Rob took a few photos of me, I almost look term for a single pregnancy. They would be the last photos of my pregnancy. I could feel the pressure returning. My parents and sister came to visit. After they left I realised I had been having contractions all afternoon, not very frequently but they were noticeable. I hadn't attended any prenatal classes so it took me awhile to work out what was happening. Rob and I had been trying to watch some TV before he was going to head home, I didn't want him to go if I was about to give birth, so we called in a midwife. She sat and timed them with me for awhile, and when they didn't stop they called in my Doctor and moved me back into a delivery room.

Of course they couldn't help themselves and attached the heart rate monitor! They also inserted two new cannulas, one in my hand for saline and one in my left forearm to administer magnesium sulphate, which is thought to protect the babies underdeveloped brains during birth. They warned me that the magnesium would be very painful. I would describe it as an intense burning sensation that moved up my arm, as the drug worked its way into my bloodstream. They applied ice to my arm to help with the burning. Lastly they gave me another injection to stop the contractions. My Doctor arrived and examined me to find I was 2cm dilated. She decided to wait and see if the injection would work. So we sat and waited, the midwife counting my contractions, Rob holding my hand, and my Doctor sitting in a corner looking very serious. Given how much time I had been spending with her the last couple of days we knew she had her game face on. Naturally smiley and bubbly, she was obviously running through the next steps in her mind. I really thought that we would be rushed off for a caesarean that night. I felt unbearably hot and flushed thanks to the burning heat of the magnesium.

After half an hour, my contractions had calmed down, and I was no further dilated. My Doctor decided not to go to theatre, and went home. I was allowed to stay in the delivery room. It did feel a little strange, to be in a delivery room, and constantly be trying to stop labour progressing. We had all sat so silently we could hear other women down the corridor crying out as they birthed their babies. We even heard those first lusty cries of a newborn. I was surrounded by all that a birth was meant to be, whilst we lived in limbo wondering if today was the day we might meet our own babies, however tiny and fragile they might be.

They set up a fold up bed for Rob again, I was given another sleeping tablet, and with Rob gently stroking my forehead I fell asleep almost immediately.

A day of relative calm

This was the view from my bed as dawn lightened my room. I was so glad that warming bed remained unused.

Rob awoke. The midwives started trying to find the heart beats again. Luckily a keen registrar was happy to do an ultrasound and show me the two babies and their heart beats. After breakfast I was wheeled down to have a more extensive ultrasound. My doctor met us there and explained all the measurements of amniotic fluid, the size of the babies bladders and stomachs, the blood flow via their umbilical cords, and the state of their hearts. Considering the circumstances the news was promising, the babies were no worse than the previous day, their hearts were fine, and poor twin B whilst still stuck low in my pelvis was breathing and moving, and had visible fluid around it now. Something it wouldn't be doing if it was still stressed. 

On my return to the ward I was moved into a smaller room. I was served lunch (I figured out it was a fish burger because it was served with tartare sauce) and Rob went off in search of coffee. He returned with treats; chocolate slice, magazines and books. We were both so tired we fell asleep. 

A pair of Doctors from the NICU came to chat with us about what to expect next. So far Rob and I had been focusing on the risks and implications of the babies while they were still inside me. The Doctors discussed the possible risks once they were born. We asked questions about survival rates, and possible disabilities, and they discussed brain bleeds, respiratory support and feeding prem babies. I have to say, and this is by no means a reflection of the doctors' bedside manner, the meeting left us both in tears. Premature birth is terrifying to contemplate. We had thankfully made it 24 hours past my first steroid injection so at least the babies lungs would be given the best chance. 

Rob was extremely tired and in need of a shower and change of clothes, there wasn't room for a fold out bed anyway so although I didn't want him to leave, I let him head home. There were a few tears for both of us. My Doctor has prescribed a sleeping tablet as I had not slept properly for a week. She strongly advised I take it, so I did, and a heavy, dreamless, sleep came quickly. 

Hospital

I felt like absolute rubbish on Saturday morning. It was another really hot day. Rob headed outside to weed in the garden. I hid from the heat and tried to distract myself by writing Christmas cards. 

When at lunch after two mouthfuls of a toasted cheese sandwich I had to run to the bathroom to be sick, where I realised I was also spotting, I knew we had to go to hospital. But I still rang my sister, a mother and a nurse, and talked to her, to see if she thought I was over reacting. She told me to go to hospital even if only for my peace of mind. Sage advice that I would now give to any pregnant woman. If you are worried about something, just go. The best thing that can happen is you are sent home. 

While Rob had a quick shower I packed a bag of clothes, my contact lens solutions, glasses and my toothbrush, I had a feeling I wouldn't be coming back. We drove into the hospital where we planned to have the girls. On the way we dropped our dogs with my parents. Ever the optimist Mum just thought I was dehydrated. But the look in my Dad's eyes let me know he understood how worried I was. 

The 40 minute trip was by now excruciating, I couldn't sit up. I squirmed trying to be as horizontal as possible. Once there I waddled into the matenity ward, Rob holding my hand. The midwives showed us into a delivery suite room, after a few checks of my blood pressure and weeing into a cup, they tried to find the babies heart beats. This would be the first of many failed attempts to do this over the next five days. Try as they might, moving the round sensors around on my belly, they could only find one heart beat; mine. They reassured me that this wasn't surprising given I was only 25 weeks along, the babies were still a bit small for the monitors. But they called my obstetrician to come and do an ultrasound. 

Of course my obstetrician was on holiday, so an on-call doctor was paged. I tried to relax and be calm as we waited for her to arrive, luckily we didn't have to wait for long. She quickly started doing an ultrasound. I couldn't see the screen, and was wriggling on my back as it was so painful now. After awhile when nothing had been said, I asked are they alive? She didn't answer straight away. But the growing frowns on her, Rob's and the midwives faces were not what I hoped to see. Eventually she told me that yes they were alive, but I had an acute case of Twin to Twin Transfusion Syndrome (TTTS). One baby was squished down in my pelvis and very hard to see, the other was floating around in a giant pool of amniotic fluid. Not what I wanted to hear at all. Despite having what I had feared all week confirmed, it was still a shock to hear it out loud. She left the room to confer with other Doctors in the practise and specialists in Melbourne who deal with TTTS more frequently. Poor Rob sat down on the chair next to my bed and shook. He was ashen and only managed to say I feel sick. I knew exactly how he was feeling, we just sat holding hands, not saying anything. 

My Doctor returned, and wondered if we were in the position to book flights to Melbourne? Depending on the results of a proper ultrasound we were about to have, it might be best for me to be sent to Melbourne for laser treatment (they close off the blood vessels that are causing the blood flow between the babies). Apparently hospital transfers would take too long to organise from Tasmania, and it would be easier if we just took a domestic flight ourselves! Our minds were in a spin as I was wheeled down in a wheelchair to the ultrasound room. I couldn't bear sitting in a car let alone in a plane.

I realised I was bleeding which didn't exactly bode well. I squirmed again as I lay on the bed as the radiographer measured and estimated. Rob sat in a corner checking flights on his iPad and then looked at the screen. He suddenly exclaimed, that's rubbish. I had no idea what he was referring to, apparently twin B, the one wedged down in my pelvis had no visible fluid around it. Eventually it was over, and our Doctor wheeled me back to the delivery room as she told us given the results of the ultrasound it was too late for laser treatment. She then went on to tell me, that my body was in labour and I needed to be transferred to the Royal Hobart Hospital for an amnio reduction. She let us know she had already booked two beds at the Neonatal Intensive Care Unit (NICU) there. Up until this point I hadn't really thought that the babies were coming any time soon, when we had discussed TTTS all those weeks ago I naively thought that if caught early it could still be treated and delay their birth by weeks. But the pressure of the extra amniotic fluid had started labour.

As we got back to the Delivery room, the midwives trying to be comforting (I suppose) said, I guess this isn't what you wanted. I broke into sobs for the first time, as I replied that all I had wanted were healthy babies, and this hope had now just about vanished. 

In that moment I realised how petty all my worries about pregnancy - the discomfort, the stretch marks, all the other various unpleasant symptoms -were. Fears about a painful birth paled into insignificance with what was now a scary prognosis for our babies.

They let me have a quick hug with Rob as we were both crying now, but then I had to lie down and keep as still as I could. I was administered steroids to protect the babies lungs (which would really only work with a second dose administered 12 hours later and then if we could delay the birth another 12 hours after that!) I was also given another drug to slow down or even stop labour.

I was transferred via ambulance to the RHH, lying precariously on my side, it was a short but bouncy trip. The ambos must have gotten a bit confused and wheeled my gurney via an internal lift into the foyer of the NICU. I came face to face with a wall of photos of tiny premature babies. I had never seen a prem baby before. The photos showed tiny red creatures, with strange looking faces, skinny limbs, covered in tubes, wires and tape. My gut reaction was one of horror. To tell you the truth they didn't look like babies, and the thought that our babies would look like that made me feel scared. I realised with a sinking heart as I read birth and death dates that some of these babies hadn't survived.

By now the receptionist had pointed the guys in the direction of the maternity ward where I was wheeled straight into a delivery suite. My Doctor was already there, once I had been shuffled onto the bed I had midwives all over me. Taking my clothes off and dressing me in a gown, helping me use a bed pan, attaching those fetal heart monitors, I was given another injection to slow the contractions that I couldn't even feel, and after three attempts a canula was inserted into my left hand for taking a blood sample and then IV fluids as I was dehydrated. Meanwhile a NICU nurse came in and checked over the warming bed on the other side of the room. Another obstetrician came to assist for the amnio reduction. I wasn't told before, or if I was I didn't remember, but apparently the procedure could cause the placenta to come away and bring on an emergency birth. Perhaps it was best I didn't know that, there really wasn't ever any choices in the treatment of TTTS, my Doctors were doing everything they could to prolong the pregnancy safely, whilst balancing effects of TTTS on the babies.

I keep saying the babies, I still didn't know I was having girls. Despite multiple scans over the next five days, at my request they still kept the sex of the babies a secret for me. 

The two doctors rigged up the equipment for the amnio drain. Slightly Macgyver-like, they used two pieces of cardboard in a cross to support the big needle they were about to insert. It would be connected to a syringe with a valve and then long thin tube to a bucket. Rob sat by my head holding my hand whilst everyone was in a flurry of activity around me. Once it was all ready they applied a local anaesthetic to my skin and using an extremely old ultrasound machine to guide her my Doctor inserted the needle into my tummy and right into the uterus and the amniotic sac of twin A, the recipient baby. Yes it hurt, but really everything was hurting by now. Mostly it was alright, but if someone touched the needle or my tummy, the pain would shoot through me. The process was incredibly slow, she carefully removed two litres of fluid, 10mL at a time, any faster would have triggered birth. 

The other Doctor stayed for the first hour, we all chatted about the most trivial of topics to keep my mind off the procedure. I was something of a novelty, and another Registrar Doctor requested to come and watch the procedure. Really I was beyond caring, they could have televised the event and I probably wouldn't have noticed. After a while as the amount of fluid in the bucket increased the pressure caused by my oversized uterus on my internal organs was noticeably less. She continued to drain as much fluid as possible then removed the needle, the whole procedure took three hours. She checked the babies with the ultrasound, and we watched in amazement as poor squished baby B was moving and even hiccuping. This was a huge relief, and after a quick internal exam for me, she decided we had delayed their birth for the day. 

By now it was pretty late, around midnight. They found me some sandwiches to eat and a fold up bed for Rob so he could stay the night. I dozed for the first hour, but after that I didn't really sleep. When I woke up I could hear Rob was sleeping peacefully, but I was still attached to a beeping IV drip, so needed assistance from the nurse to visit the toilet. At 4am they gave me a second steroid injection in my leg, and reattached the fetal heart monitors, and spent close to an hour trying to find their heart beats. They would pick them up and then lose them, so were never quite sure they could hear both. I could feel the babies moving, so I wasn't too alarmed. 

Dinner for two

Sharing my breasfeeding story (so far) for World Breastfeeding Week.

Disclaimer: I know that discussing how a Mama chooses (for those given the luxury of a choice) to feed their baby can be an area of intense debate, opinions, and in some cases, guilt. This is my breastfeeding story, I share it only with the intention of letting you see what a premmie/twin mother faces when she breastfeeds, and to hopefully encourage any readers who are just starting out on their premmie/NICU journey to know it is possible, and that all those lonely hours with a breast pump are worth it.

In the first few weeks after the girls were born Kanga cuddles were the highlight of our NICU visits. During a Kanga cuddle the parent removes any clothing on their top half and dons a lovely hospital gown (backwards) and then your tiny premature baby is placed carefully onto your chest with all their wires, sensors and breathing support. The skin to skin contact has benefits for the baby (stabilised breathing, heart rates and body temperature) and parent (particularly the mother, helping with milk production).

On day 18 (equivalent of 28 weeks 4 days pregnant), I was enjoying a Kanga cuddle with Maggie. She was still so tiny, only 865g. As much as I was enjoying it, Maggie was quite disgruntled; as I would be if I had hard plastic breathing prongs in my nose pushing up against someone's chest. The girls were normally placed high up on your chest just under your chin. Maggie's nurse on hearing her cry suggested we move her down towards my breast to see if that might make her a bit happier. I remember as she was placed there she immediately tried to suckle my nipple with her tiny mouth and was even swallowing. Rob and I looked on in amazement at the most basic of survival instincts in our tiny daughter and cried with joy. Even though she was unable to breathe on her own, if given half a chance she was going to try and feed herself! Not long afterwards I had a similar experience with Elisabeth, although once attached she just wanted to stay there, as if claiming her territory, and was not bothered with swallowing.

During those three and a half months in hospital, I had many opportunities to practise feeding with the girls. As they were so small, they generally weren't strong enough to eat an entire feed on their own, so we would guestimate and top them up via their nasal gastric tube (NGT). Feeding was very clinical, the amount of milk they were given carefully calculated as they grew, and when I wasn't there to attempt a feed it was given to them via their NGT on strict time intervals! Eventually they were fed 80mL every four hours.

Feeding a premature baby is a little more complex too. First of all, their little mouths are just too small to get that mouthful of breast as well as the nipple in, so they struggle to latch on. The solution was to use a silicone breast shield. While these felt awkward at first, it meant the girls once they started feeding could rest without having to keep the suction going. It also stopped too much milk flowing into their mouth. I still use a shield for Elisabeth after four months of feeding at home, as she grew used to it, whereas Maggie could latch onto anything so hasn't been using one after the first few weeks.

Added complications include the NGT taped to their face with a dangling tube that easily got caught on things. Maggie had high flow breathing support as well, so had a plastic tube running under her nose and across her cheeks making it difficult for her to get her mouth in close enough. Both girls were also attached to various monitoring devices which meant a few more cables that you needed to be mindful of.

Sometimes the girls for whatever reason were too tired to feed very well, they may have had a bath, or had a needle or blood transfusion.  After a few minutes of trying I'd usually let the nurse feed them via the tube and hold them close instead. Timing a feed with both girls around my expressing schedule, toilet or meal breaks for myself and their regular care and feed times was always a bit of a challenge. Usually once they were topped up via the tube you couldn't move for at least half and hour as they could spill the whole feed back up. I can't tell you how many times I sat down ready to snuggle the girls after their feed and top up and realised I was busting to go to the loo, or starving, or as the cuddle went on could feel my breasts getting more uncomfortable.

But despite all of that, those moments when it all worked were some of the best in NICU. Maggie and Elisabeth unfortunately caught a cold near the end of their stay in hospital which hampered their feeding for a few weeks, as they couldn't breathe and feed. At the height of their cold, I was actually at home as I had it too, so they went back to receiving all their feeds via the NGT.  When I returned to visit them in their isolation room and attempted breastfeeding again, they both desperately grabbed onto me and latched straight on, it was only then I realised just how much it comforts the baby as much as the Mama.

Finally after 3.5 long months I decided it was time to room in and breastfeed them exclusively for 48 hours. Luckily their Doctors agreed with me. The final removal of those pesky NGT tubes was when it felt like they really would be coming home with us. I would be like any other Mama with their newborn babies in hospital. Those two days were, I have to say, pretty horrendous, Rob and I probably got a total of four hours sleep over the two nights! But I was feeding our daughters without any nurses and after a final weigh in (Elisabeth gained weight but Maggie lost some), I felt reassured we could do it, and we were free.

Breastfeeding twins takes up a lot of my day. It would be more time efficient to twin style feed the girls at the same time, but I found it awkward to arrange them on my own (even with my special twin feeding pillow), and it was just too hard, one would slip off or need a burp and the other would get grumpy. So I feed them separately. I like it better as I get some one on one time with each of them. I also have a side for each girl, going against the common wisdom of swapping sides each day. My girls feed differently and I'm sure it caused a bad case of mastitis within a week of coming home. I have been very lucky not to have any milk supply issues so far. Although I know I couldn't have prevented the onset of twin to twin transfusion syndrome and their premature birth, I think I would have felt even worse if I hadn't been able to provide the girls with milk. It was the one thing I could do to help them grow in NICU that nobody else could do. It also provided a structure to my day, helping the days to go by quickly and ensured I took care of myself.

Just a few last points:

I'd like to thank a few people. Firstly, Rob. He has always encouraged me with the expressing routine and breastfeeding, made sure I ate and drank enough and got plenty of rest. He also got up for every one of the 2am expresses; as I'm such a heavy sleeper I might have slept through the alarm. He still gets up and helps with every feed during the night too. 

Secondly, a friend who sent us her double electric pump, as soon as she heard of the girl's early arrival. She had it checked over, stocked up on new bottles, pumping gear, tubes, and even plastic containers for milk storage. As a premmie mother herself, she understood what we were about to go through and we'll never forget her generosity. 

Thirdly, the Lactation Consultants at the Royal Hobart Hospital are an amazing and enthusiastic group of women. Even before I had the girls they were visiting me in my hospital room to give me information to read. Every week day during our NICU stay they would check in on me, ask how I was doing, check I had all the equipment I needed, make sure the expressing was going ok, and were the ones who helped me learn how to feed the girls. They were so helpful when I had mastitis, making sure I got antibiotics to fix it up. The NICU nurses were always encouraging too. On day 2, I made what seemed like an epic journey (after the caesarian) down the corridor from maternity to NICU (perhaps 15m) at 10pm with a syringe of colostrum. It was my first solo visit, and the nurses all exclaimed over the tube, told me how well I was doing and then let me help change my first nappy. It was worth the pain involved as I hobbled back to my room. They continued their encouragement all the way along our NICU ride. 

Lastly, a fellow mother, whose son was born a few weeks after Maggie and Elisabeth. She and I would always end up chatting in the expressing room, checking up on each other, our babies, our husbands. Mostly we laughed and joked about our days, sometimes there were tears and hugs, but we forged a friendship during an incredibly stressful time over the rythmic sound of electric pumps!

If you have a friend or family member who has just given birth prematurely and you'd like to encourage them as they undertake expressing for their tiny baby, may I suggest a little gift pack you could put together for them. Include a drink bottle, some milk storage bags, some snacks such as muesli bars, almonds, or chocolate, a jar of multivitamins, a notebook and pen, a small handtowel, some nice hand cream and offer them your freezer space!

Maggie not long after we got home.

Elisabeth holding my thumb while feeding.

225 days old

Yesterday the girls were 224 days old. This number may not seem that significant to most people. But to Rob and I it is a big deal. It meant that the girls had spent as long with us at home as they had in the Royal Hobart Hospital NICU. 

When I posted a celebratory photo on Facebook stating the important milestone, a perceptive friend noted that tomorrow (today) is an even more important day. They have spent longer with us at the hut. Whilst Rob and I have nothing but the utmost admiration and respect for the dedicated and professional team of nurses, doctors, lactation consultants, receptionists, hospital aides, cleaners, pharmacists, and social workers that make up the RHH NICU team, it is lovely to see the days free of hospital tally up.

I follow a few of the support groups for premmie parents on Facebook, and while I appreciate it is helpful for some parents, I've stopped reading their posts. Mostly because it seems some of the parents can't let go of the trauma of a premmie start to life for their child(ren). 

I am thankful every day that Maggie and Elisabeth got through their NICU stay without surgery, serious medication, hearing or visual impairments, or (so far) a physical or mental disability. It could have been so much worse. 

But it would be terrible for my mental and physical health to keep ahold of the pain and fear I felt back there. Yes, I cried and sometimes still do. Yes, I was so scared for them I felt sick, and I'm sure I will feel the same again if they are ever seriously unwell. Yes, it was unfair for them and us, but I've learnt the hard way that life often is. But I am determined not to let those emotions dictate our current life. I try to use those emotions to help me enjoy even the tough moments of being a Mama of twins. When I'm alone and two girls are crying and need me at once. When there are simultaneous nappy explosions. When they are grizzly and squealing because they've forgotten how to go to sleep. When Elisabeth wants to feed nonstop. As soon as I feel a twinge of annoyance or exasperation, I breathe in and see them at day one. Tiny, helpless, red babies. I am transported back to the sounds of alarms, the flashing red signal on the computer screen bringing their nurse running. Or their cries of pain from yet another needle. The discomfort they felt trying to tolerate my milk. Waiting on every brain scan, heart echocardiogram or eye test for a good result. Then I breathe out, and realise my current situation is not difficult or trying at all. 

I hope I can still visualise those moments when they are teething, or in the terrible twos, or refusing to eat anything but macaroni cheese, or asking "but why" for the zillionth time, or not doing their homework, or fighting with each other or giving their parents attitude in their teens. 

I want to enjoy every moment of being their Mama, and be grateful for even the challenging moments as a parent. I would like their premmie start to be a gift for us, not a burden to carry throughout their life.

Right now we enjoy watching them take in the big new world around them. The colours, the light, the textures, the sounds, the smells. We encourage them as they try to roll over, their faces full of determination and concentration as they work on getting their bodies to do what they want them to. We delight in their smiles as they recognise us. We laugh at their crazy squeals and babbling as they practise using their voices. We help them use their tiny little hands to pick up rattles, blankets, or grab at my nose or hair or their own toes. We love watching them sleep peacefully. I want to remember the way they lunge with excitement to feed from me, holding tight onto my top to ensure I don't go anywhere.

I look forward to the next 112 days, and will be cheering them on as they continue to grow up.

A half birthday

The following list is from the Miracle Babies Foundation Facebook page. The list was compiled by parents on a US premature baby forum. I have edited it to Australianise the language, and added text in italics.

Only a NICU parent,

Would be excited about:

- increased feed volumes.

- 5 grams of weight gain.

- lower oxygen levels.

- a few centimetres in length.

- seeing their baby open their eyes for the first time, weeks after their birth.

- poopy nappies.

- graduating beds (from a humidicrib to an open cot).

- moving into the Special Care Nursery from the Intensive Care Unit.

- finding out at their 10pm goodnight call that their baby is fine, that there is nothing to report.

- going to hospital (because we got to see our babies).

- Baby CPR classes (they're getting us ready to go home).

- outgrowing clothes (or actually needing to wear them as they are in an open cot).

Knows:

- the dread of walking out of those doors to go home to sleep.

- hearing your baby cry for the first time, and crying just as hard.

- the fear of seeing your baby for the first time.

- that Brady's are not referring to the Brady Bunch (a Brady,short for Bradycardia is the slowing of a babies heart rate to a [quite literally] alarming level).

- what CPAP means (Continuous positive airway pressure, the system that helped our girls breathe. Soft prongs were inserted up their nostrils or a tiny mask provided oxygen or air under a small amount of pressure. This helped keep their lungs expanded and reduced the effort required to breathe. We were lucky that neither Maggie or Elisabeth required ventilation or surfactant).

- the pain of not holding your baby for days, and then being terrified of hurting their tiny bodies when you finally can.

- the workings of a humidicrib.

- what each beep and alarm means.

- how important kangaroo cuddles are (to baby and Mum and Dad). A kangaroo cuddle is a skin to skin cuddle with your baby. They are still attached to all their tubes, sensors and breathing gear. But it helps the baby maintain a stable heart and breathing rate. It helps the Mama and Papa bond, even if it makes them cry! 

- that a parent's job is to fix whatever hurts their child, and know the pain of realising you can't.

- what a PICC line is. (A Peripherally Inserted Central Catheter. A long, flexible tube that is inserted into a peripheral vein, usually in the upper arm, and advanced until the tip terminates in a large vein in the chest near the heart to obtain intravenous access. The girls had these in their first few weeks of life to deliver Total Parenteral Nutrition - TPN - straight into their bloodstream as their stomachs and intestines weren't developed enough to absorb nutrients from my breast milk. Their PICC lines used to scare me so much in our first cuddles as I was terrified of accidentally pulling or dislodging it. I was very grateful the day they were removed).

- understands adjusted age, and counts down every day until the their due date.

- what it feels like to cry the first time you see your baby in a humidicrib. I've already written about how I wept when I saw them in my birth post a few weeks ago. I still cried most times I saw our girls for the first few weeks.

- the trepidation over announcing their birth. I waited to send cards until they were home. 

- how amazing tiny fingers feel clenched to your hand.

- the pain of hearing a woman in her third trimester complaining about her pregnancy, and wondering what that would be like. My obstetrician shared with us that as she left the hospital after delivering our girls she walked past a woman, heavily pregnant probably about to give birth, outside smoking. She told us how sad it made her feel, because she knew we would have given anything to deliver our girls full term and how careful I'd been to ensure the health of our girls.

- there are no choices in the NICU: you have to be strong. Many people have called Rob and I brave for what we endured to bring our girls home. But the way I saw it, I needed to support Maggie and Elisabeth, as they were the ones who demonstrated the true meaning of the words; strength, courage, endurance, determination, bravery and fierceness.

- cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer. The cleaning products the cleaners used also stirred up my asthma. I was so glad to walk out of that hospital and leave such an artificial environment behind. No more air conditioning, fluorescent lighting, vinyl chairs and strong smelling detergents.

- every inch of their NICU, what walls they cried against, what bed spaces they "lived" in, what shifts each Doctor, nurse, therapist and staff member worked.

- that you will be a germaphobe for at least the next two years, people will think you are weird, and you will know you are literally saving your child's life. I have already been struck by people who can not understand this, at first it hurt, but after this last week when the girls just had a little cold and how much I've watched them and worried, I won't care if I lose friends over this. I met a number of parents of premmie babies that have had to revisit hospital and even the NICU each winter as their child has battled to breathe with a respiratory illness. It will be a miracle if we don't have to revisit hospital with one or both of our girls, and I will do anything to protect them from unnecessary illnesses.

- 80 nurses by name.

- that with every day in NICU makes you one of the lucky ones. A fellow premmie mother and friend said "There are worst things in life than being born prematurely". I didn't believe her at day 4, but by day 112 we had witnessed other parents deal with much more painful sicknesses and sadder outcomes for their babies. 

- just how important each new day is and how much significance a new day holds. Our girls were born 14 weeks too early. For us our NICU ride was the ultimate waiting game. Waiting for stomachs and intestines to be able to process breast milk, waiting for the kilogram milestones, waiting for the girls to be stable enough to hold, waiting for their little lungs to mature enough to breathe unassisted, waiting for enough strength to feed on their own, waiting until they were healthy enough for us to take them home.

Yesterday Maggie and Elisabeth celebrated their 6 month birthday. In some ways it has gone so quickly, but in others it feels like years since I heard my Doctor say to me, "Marian, your body is going into labour, we need to transfer you to a hospital with a NICU." She said it calmly, but compassionately, as she pushed my wheelchair back to my room. We had just had a very scary ultrasound where we could see the mass of amniotic fluid around Elisabeth and poor Maggie crammed into my pelvis without any visible amniotic fluid. I clung to the fact that we could see two heartbeats. The only thing I could manage to say before sobbing and wanting to be held by Rob was "I just wanted my babies to be healthy". Never before have I felt so sick or had such an aching heart than I did that day.

Yesterday we also had our first follow up appointment with the NICU paediatrician and physiotherapist, and so far the girls are behaving just like healthy 12 week old babies (their corrected age), albeit slightly smaller than usual! My heart is slowly healing from that shock last December, and although I know there could always be tough times ahead, right now I am so thankful for our two beautiful, feisty, endearing, and yes, healthy daughters.