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

 

 

Dear Doctor

Just over two months after my identical twin girls birth (at 27 weeks), I still couldn’t shake the anger that I had towards the my obstetrician. I couldn’t move past the fact that throughout the time that I was in his care, he was so complacent and treated me as he would a general singleton pregnancy, with low risk. I was so distressed with his and the ultrasound technician’s carelessness that many thoughts would flow through my mind at night. It was relentless, I just could not move on and accept what was.  So much was stolen from me.  One thing that I always imagined was that I would attend his practice after the birth of my girls with a thank you card and a picture of the girls for his wall, along with a nice bottle of champagne for him as a grateful gesture. Just one of the many unrealistic expectations of my pregnancy.

In attempt to help me grieve, express my concerns and hopefully prevent other mums going throughwhat I was going through,  I decided to send him an email. I spent many days writing, editing, rewriting…Until finally I pressed the send button.

It has now been over 6 months since I sent that email and I have not recieved a reply. I guess it is due to legal reasons, as if he were to admit fault, he could get in big trouble, not that I would ever take this any further. Mistakes happen and I know that others have had wonderful experiences with this doctor.

To this day, I am still having great trouble moving on and dealing with this hurt. I have re-read and re-edited my email in hope to continue my healing process, to raise awareness about prematurity, and to encourage other mummy’s to never be afraid to advocate for themselves.  I am definitely a lot more forward in this email than I was in the original and I have included pics to help break it up. Get comfortable, it’s a long one. 

 

Dear Doctor,

Thank you for being so kind and supportive throughout my girls birth. During the traumatic time leading up to their birth and the actual procedure I felt reassured and comfortable that you were there. I am extremely grateful that my girls entered the world in safe hands.

But doctor, my girls have been dealt a hand that I believe could have been prevented. The have been dealt a hand that could mean that I won’t ever get to bring them home. They have been brought into the world at a time when they were not ready to live and breathe on their own, at a time when they needed to be inside me, protected and nurtured.

just born
One of the girls straight after birth with their NICU team.

For me, becoming pregnant was a long, physically and emotionally exhausting process and when we found out we were expecting twins, we were over the moon. I did my research and you were recommended to me by two doctors, both informing me that you specialized in twin, and high risk pregnancies. With this being my first pregnancy and it being twins, I of course took this advice and decided to pay to go private as I believed it was the best and safest thing to do for my unborn children and myself. I would pay you thousands to ensure that my babies and myself had the absolute best care.

 

 

I always wanted to be the calm, easy, breezy mum in pregnancy and in birth. I was this. And now I know that perhaps it was my downfall.

scan
8 week ultrasound. One placenta. Dichorionic/Monoamniotic twins

I trusted you. I trusted you with my life and my unborn twins’ lives and you let me and my babies down. You had a duty of care for myself and my babies. And I do not believe that you did your best to keep me safe and my babies alive.

I was hospitalised at 26+5 weeks and every day I was in hospital and my girls stayed inside, was a blessing. My gorgeous girls were born via emergency c-section at 27+3 weeks. I honestly believe that their extreme prematurity could have been prevented and I wish to explain why. Although it won’t help my girls now, I do hope that this feedback may help families with multiples that come through your practice in the future.

 

To begin with, at my second appointment with you, I mentioned that my babies were identical twins, because this was what my previous doctor had told me from my 8 week ultrasound. But when you giggled at me and asked me how I knew that, I doubted myself. You had received all of my files, scans and information so I thought, ‘okay, I’ll just shut up and let you do your thing’. But my previous doctor had told me originally that there was in fact one placenta and since the girls birth I have learnt that it is on this first scan that it is the most clear. Your ultrasound technition was unconfident (and boring quite frankly)  and she said that she thought (with definite doubt in her voice) there were two placentas. You looked at the results and told me two placentas too, so I trusted this as we continued into our pregnancy. But now I know ALARM BELLS…you should have double checked, triple checked, quadruple checked even! If the first scan said one placenta, wouldn’t you think to look a little closer at the ultrasound? The difference between one and two placentas was the difference between a low-er risk and high risk pregancy. You didn’t listen to me. You didn’t listen to my previous doctor. You condesendingly giggled (at the time I thought your giggle kind and cute, but now I think different as I am slamming my keyboard) and told me two placentas, which meant you did not have to see me regularly. Major boo boo. I only wish I spoke up, advocated for myself and demanded you took a closer look.

last scan
The last ultrasound before I was hospitalised.

As I said, this error meant that I was not given more regular (fortnightly) ultrasounds that I obviously needed. Before I was hospitalized, My last ultrasound was at 22+6 weeks and the next one wasn’t planned until 27 weeks. Had I have had one at 25 weeks I believe that we would have picked something up and prevented the traumatic experience that was my birth and the horrible start to life that my girls have had

Another issue is that I was never informed of the risks of prematurity, the possibility of twin-to-twin transfusion, signs that I should look out for, or the fact that it was very likely that if my girls did come early, that I would have to go to Canberra hospital. I booked with the private hospital which now I understand, was not a good choice as the chances of birthing there with twins was unlikely. I wish I was informed about what NICU and special care is and perhaps even statistics of premature births so I didn’t go into this whole experience completely blind. I was a first time mum. You were my doctor. I needed to know these things even if they were scary. I am a studious person but I had decided not to use Doctor google, after all I had paid for a real-life doctor, that specialised in twins. I trusted you would tell me all that I needed to know.

me at last scan
Oblivious to what was to come. My last scan before I was hospitalised.

Furthermore, I have now learnt that I could have been having my ultrasounds at Canberra hospital, where they are very accustomed to multiple births and it is free. I wish I had been informed about this to help save us financial stress and also as they may have picked something up sooner (and been less boring).

At my last ultrasound (22+6 weeks) my girls were both head down and Dahli was so far down that the lady couldn’t get a measurement on her head. First of all I can’t understand why she did not just do an internal to get the measurement (they did this at Canberra hospital when I was first admitted), which would have put our minds at ease as the information that we had to wait for two weeks for over Christmas to be confirmed, showed that her head was extremely small (not even on the scale, small). Also, at the time I thought that being head down and so far down was probably a sign that the girls may have been coming soon, but nothing was said so again, I just trusted and went with it. I feel this was a big mistake.

After this scan I found out that you had looked back on my first scan (from previous doctor) and did in fact see that there was one placenta. Information that was gathered a little too late and yet still, nothing was done until I ended up in hospital bleeding. I also learnt after the birth of my girls that my cervix was not really looked at properly at all. I pressured to have this information at my 6 week postnatal appointment and there was nothing. After the premature birth (with no explanation) of my babies I thought perhaps my cervix was short and maybe that it should have been stitched, but the information was not recorded. Surely my cervix is something that should have been studied over the course of my ultrasounds.

christmas bump
Christmas time bump! I thought I would last at least another 10 weeks.

Finally, the couple of times that I suggested to you that we make a birth plan, you giggled and said we would do so closer to the birth. This not only made me feel stupid but also gave me a false sense on security that my girls would go close to term. Of course birth plans can not always be followed, but perhaps this was your chance to go through the what ifs and possible scenarios of twin births, rather than acting chilled and moving on to your next patient.

This rough start to my babies’ lives may affect them for the rest of their lives. It will most definitely stay with me forever and I just can’t seem to shake the feeling that this all could have been prevented. I believe that everything could have been handled with greater care and that I could have been better prepared. I am so unbelievably dissatisfied and disappointed and it is my hope that this feedback is taken on board and that it may help people who are pregnant with multiplies that come through your practice in the future.

Our future is uncertain. The health of our babies is uncertain. The trauma that I have experienced is like nothing I could have ever imagined. I do not wish to cause you hurt. But I do believe that you should know the affect that few complacent, careless mistakes can have.

Thank you,

Terri

 

So there is is. Raw. Uncensored (Okay maybe a little censored). Of course I won’t ever send this re-edited version of my email but already, I feel a little more release.

Please remember to never doubt your mummy instincts. Don’t worry if you feel silly. Actually, if you are made to feel silly, find another doctor because if you don’t advocate for yourself, then who will! You are strong and fearless and you know best.

Our girls Dahli and India are almost 9 months old now (6 months corrected) and are growing stronger and healthier everyday. Looking at them, you would not know that they had such an awful start to life. They are incredible. They are my heroes. They inspire me to be a stronger and better person every single day.

last pic

Love Terri

 

 

15 Things being a twin mum has taught me.

Becoming a twin mummy has definitely been the hugest, most rewarding learning curve I have ever experienced. I wanted to be a mum so much for so long. I thought that I was prepared as could be and then the universe threw me twins! Everyday I definitely learn something new and along with the following 15 lessons, the overarching theme of twin mummy life, is that you have to laugh at everything. I think having a sense of humour and understanding the hilarity that is twins, gets you through everyday and makes the journey all the more enjoyable. Here are 15 things that being a twin mum has taught me (so far):

  1. If one of your babies is going to have a poo explosion, so will the other. Most likely at the same time, and if not, definitely straight after you have just changed the first nappy. Often they decide to do their number twos while I am feeding and hooked up to the expressing machine and then won’t take their bottle until I change them! Quite the challenge! just chilling poo
  2. All of my four limbs can and will be used simultaneously all day long!  Example 1: Right arm: bottle; Left arm: bottle; Right and left leg: cradling baby and/ or bouncy-bouncy burp (whilst boobies being pumped!). Example 2: Left and right leg: cradling baby and/or bouncy-bouncy burp; trunk and chin/shoulder: position second baby here to burp and/or soothe; both hands: patting backs to a tune as I try to keep bubs calm and bring up their burp/s! (pumping here too!) Example 3: Right knee: baby; Left knee/upper leg: baby; right and left hands: entertaining with toys. Example 4: Right knee: baby; Left knee: baby; Right and left hands: baby piano. Example 5: Both arms hold baby and dummy in baby’s mouth; both feet jingle play gym for second baby. Example 6: Both feet: bouncing bouncers; both hands: eating lunch and entertaining babies. I think you get the picture, there are quite a few more variations! possible-feeding-station.jpg
    feed-time.jpg
  3. One smile makes me melt, double smiles makes my heart explode! And catching them on camera- much more difficult than you think. Double smiles always end with a mummy celebration (insert delirious mummy whooping and nonsense lyric improvised song here). double smiles
  4. When I feed one baby, I absolutely must feed the other at the same time! Getting off schedule is never an option in our household! Of course, I make the rules and the girls do not always follow suit!
  5. Double cots make for a fun, simple exercise circuit or stretching station while waiting for bubs to drift off to sleep. Who knew!?
  6. Twin conversation is a real thing and definitely the cutest thing I have ever heard. I think one day I may feel a little left out, but for now, listening to my babies chat to one another as they drift off to sleep makes me a very happy, proud mumma!
  7. Double screams hurt my ears! Especially when Bub’s heads are next to my ears as I desperately try to burp both.
  8. Feeding two babies has turned me into a midnight, mummy monster snacker! I am so hungry. All. Of. The. Time!
  9. Double morning snuggles are the best part of my day!morning smiles
  10. I actually do like dressing the girls the same, even though I thought I wouldn’t. Its easier and cuter. Oh and I love love love baby bows! bows
  11. It is important to get out of the house every single day!
  12. Twins are soooooooooo much fun!
  13. Travelling with twins is exhausting but well worth it!
  14. My husband is nothing short of amazing.
    daddy.jpgdaddy
  15. How powerful, and all encompassing love can be…doubled!

 

I think I could probably add to this list daily, so expect another post like this soon!

 

Love Terri