Author: rt@hotmail.com.au

 

Premmie parents face different parent challenges from the get go and can be misunderstood by parents who haven’t got the shared experience of a Neonatal Intensive Care Unit journey. Taking our tiny ex 26 weeker baby daughter to her first pediatrics appointment post hospital discharge (Inside My Womb), I feel our journey is far from over. It is like exiting a long dark tunnel that has confined us for so long narrowing our focus to our NICU crib and all the hurdles needing to be overcome before our sweet baby is released. And now as she has been discharged from the hospital confines that limited our time with our baby,  we are still travelling along the same narrow road, only there is light around us and in the distance we can see the rest of the world, slightly out of focus, but its still there. One day we will meet with the outside world again, but for now its baby steps.

Being a NICU parent is all consuming. As we slowly snaked our way around the ward, our baby moving between nurseries from the Intensive Care end to the Special Care section, as she grew and gained strength and passed tests it almost felt like we were in the Matrix. You know that scene, where Keanu Reeves contorts his body and bends backwards to dodge bullets that slice through the air around him in slow motion. Having a baby in the NICU is a bit like that, each day we are faced with new challenges as our baby fights for life. We were lucky, only being grazed a few times as our daughter’s struggle became too much on a few occasions and she required blood transfusions and extra invasive testing. She was literally brought back to life after birth receiving chest compressions and oxygen and spent 12 weeks growing in a plastic womb outside my body. We are lucky she is strong, lucky she is a fighter, lucky we only got hit towards the end of our journey with a diagnosis of retinopathy of premmaturity and osteopenia.

Moving to the special care end of things, the focus became more about normalising life for our baby and her gaining sufficient weight to be discharged home. I watched her bundled and strapped into a small humidicrib mounted onto an ambulance stretcher to be moved to a smaller hospital for the final stretch of her hospital journey. I shed a tear as we said goodbye to the safety of the NICU and thought to myself that this is the first time she will see sunlight, the first time she will be outside, and only briefly and through a plastic box. And when we arrived at the special care nursery shock took hold as slowly her probes were removed, monitors switched off, and I was actually able to pick up my baby without leads attached. And whilst I was scared of the changes at first, asking the nurse with desperation “But how will you know she is breathing?”, it quickly became such a novelty to be able to pick up my baby without permission. Even if I had to do so methodically with the hospital process of temperature checking prior to lifting her up into my arms.

Then we entered an episode of The Biggest Loser except it was the opposite, so more like The Biggest Gainer. I spent weeks robotically going in to feed my baby, whilst still pumping milk in between as she was too tired to feed most days. I would hear other mothers tell their baby “Wake up and eat. Eat baby EAT!” as they desperately wanted their newborn to gain weight so they could begin life at home with their little one. Slowly our baby began to feed, slowly she gained weight and eventually the day came when she was finally ours. We actually had a baby! It wasn’t just a dream, she really is ours! We had to return for a  weigh in two days after discharge, and I was terrified they would take her back if she hadn’t gained enough weight. At home we watched her, mesmerized by her beauty, her tiny perfection, and then looking at the clock we would gently wake her for feeds. I finally had my baby, no way did I want another chapter of hospital.

When reintroduced into the real world as a premmie parent I feel I should have a giant sticker attached saying “26 weeker” as a mark of my paranoia and concern about germs. So excuse me if I cringe when your kid coughs, or go white as you wipe your toddler’s snotty nose. I’m a prem parent. I have seen my baby fight for her life and it’s something I never want to see again. So don’t take it personally as I disappear into the distance and make for the exit after assessing the potential dangers in the area, one of which is your sick kid. I’m simply doing what any good parent does, I’m protecting my baby. And being a premmie parent, well germ paranoia comes with the territory. Oh, and any thoughtful parent protects other kids too, by keeping their unwell kid at home, just a thought. So yes I might melt away into the far reaches of the playground when your snotty nosed kid approaches. Don’t take it personally when I wince as your kid wheezes away. And when you come to take a sticky beak at my 4 month old baby who is the size of a newborn because that’s exactly what she is adjusted age, if I don’t move the muslin wrap creating a barrier between her and the outside world there is good reason. Since leaving hospital we have been hermits, as much as one can be with school and preschool kids. We know if our premmie gets a cold it could spell a hospital stay  and we simply don’t want to risk it. We fought so hard to get our baby to where she is, alive and at home. So if your kid has a rash we will quickly make for the nearest exit. If we see you reach for a tissue to wipe you kids nose again we will dissolve before your eyes.

Being a premmie parent now myself I have discovered that premmie parents are many things. We understand pain, both physical and emotional and both so deeply. A premature birth is traumatic, often unexpected and sometime its been known to be coming the entire pregnancy, like a ticking time bomb that if detonated too early, could end in tragedy. The pregnancy we hoped for has been taken away. We grieve the pregnancy journey we wish we had. A healthy pregnancy that went to term. Months of enjoying the sensation of feeling our baby kick happily inside us. Growing our baby bumps big and wearing them proudly. Living without fear that we might not get our happily ever after. Celebrating the life growing inside us with a baby shower. Holding our toddler, their legs wrapped snugly around our baby bump. All things most pregnant mums take for granted.

Premmie parents are forced to watch their baby fight for life from the moment they are born. We watch our baby grow outside of our womb, and can be left waiting days to touch our precious baby. We might get to hold our baby sooner than if they were a term baby but usually only for an hour a day. We go home from hospital without a baby. Each day we visit our baby and return home again, without our baby. We need to make decisions, sometimes before our baby is born regarding medical treatment. It is a special kind of magical watching your baby grow outside of your womb, but it is also terrifying and gut wrenching as you see them endure painful needles and procedures, watch their monitors and become fixated on the numbers flashing before you and realize none of this would have been required if your baby was born at term.

Premmie parents are powerful, deriving strength to carry on each day after day after day of hospital visits, doctors rounds, waiting for precious kangaroo care time, pumping milk every 3 hours and pushing to recover from birth sooner than doctors would like. And the rest of premmie parent’s responsibilities don’t stop. Older siblings still need to get to school, still need dinner cooked, clean clothes, time. So its lucky premmie parent are positive. We know there’s always someone worse off than us, we have seen them, that parent down the hospital corridor sobbing, that mother who silently sits by their baby’s crib as doctors solemnly deliver information which can’t be good as tears wet her lap. Premmie parents know how truly lucky they are. We never doubt that we are blessed, we know our baby is alive and that is really all that matters. We may be perplexed by what is unfolding in front of us, but we keep focused on the positives every step of the way. If we are able to hold our baby it has likely been a good day and whilst we cry at night for the missing a piece of our heart, after listening to other parents of newborns complain about lack of sleep, we happily set an alarm to pump at 2am, wishing it was our screaming baby we were holding and not plastic pumping parts. Premmie parents don’t take any moments for granted, we know how different things could have been so the little things about parenting that bother parents of full termers, don’t phase premmie parents. A sleep deprived premmie parent with a reflux screaming baby at home in their arms is a happy premmie parent.

And finally premmie parents are passionate. Passionate about parenting, about sharing comradery with other premmie parents, about making the path a little smoother for new premmie parents through friendship, and awareness. The journey isn’t over,  once a premmie parent always a premmie parent. The world never looks the same again and the parenting is a little more precious, every moment priceless.

 

 

Pregnancy has taught me many things. It has taught me that I am willing to put my child’s needs above my own before they are even born, that I like the feeling of our baby moving about inside me, that maternity clothes are super comfy and that my boobs look way fuller and frankly better when I am up the duff. But after our youngest was born I knew for sure I was done forever with being pregnant. I can say this with absolute certainty because I didn’t just give birth to our daughter, I also gave up my uterus and all its bits an pieces. If you want to be technical I was lucky enough to hold onto my ovaries so yes via a surrogate we could procreate, but I will never hold a baby inside me again. It wasn’t by choice either, although I did have time for the shock to sink in after a diagnosis of complete previa and increta at 19 weeks gestation, before I went into labor at 26 weeks gestation after the most difficult and complicated pregnancy (inside my womb). So this, my last pregnancy taught me many things too, many different things than my first three pregnancies taught me.

I learnt that:

1. God only gives us what we can handle – I have heard the saying many times before that God only gives you what you are strong enough to handle. Well God must think I’m incredibly strong after the onslaught of complications thrown our way whilst pregnant with our last baby. I remember telling friends “I want to finish where I started” referring to the fact I wanted one more baby to cherish and love, possibly another girl like our first born. I feel God listened and God gave. Both my first and fourth babies brought with them the most difficult of deliveries and recoveries with me suffering a secondary PPH after our first and me surviving months of bed rest and heavy bleeding, preterm labor,sepsis,  an emergency hysterectomy and losing 5L of blood after our fourth was born via classical section (meaning a mighty big cut). I reason that I must have grown in strength since first becoming a mother and feel blessed that God has given me the strength to endure such a traumatic ordeal and come out on the other side even stronger in my love and trust in Him.

2. God carries us when we are too weak/unable to stand/hold ourselves- Many times during this pregnancy my cheeks were cleansed in tears, my heart filled with fear and I was left questioning if I could continue. I was told to give the steering wheel to God, encouraged to let go of my worries and simply trust. I prayed for a positive outcome, for a planned and safe delivery, for the survival of my baby and me. And on the days I was too emotionally depleted to pray I took comfort in the knowledge our Church family were praying for us. In the end all I could do was trust. During my incredibly painful labor, as my temperature rose and I became septic, I felt comfort as I sensed a larger presence in my room surrounding the teams of doctors that had assembled to discuss my fate. The words “As I walk through the valley of the shadow of death, I fear no evil” swirled in my head,  and I felt reassured that God had me in His perfect plan and it had already been figured out for me. And whilst I may have been quoting  Coolio in my drugged up, spaced out delirium, I knew with certainty this was God talking to me through Psalm 23:4. When I woke from the heavy sedation in ICU, arms puffy and strapped to a cold metal bed in a sterile white prison, unable to talk as I was intubated,  hole where my baby had been, God gave me another sign to trust in His plan. On my right hand a small pink stain resembling a tiny footprint appeared and remained for my entire hospital stay. Instantly I knew I had indeed given birth to a girl and I also knew this was God carrying me when I was too weak to walk myself. “My precious child, I love you and will never leave you. Never, ever, during your trials and testings. When you saw only one set of footprints, It was then that I carried you.” Again God surrounded me with his love and brought me hope and strength and will in my darkest hours.

3. Trust in God’s plan – It always amazes me how meeting some people can in hindsight seem so uncanny. I truly believe God assembled people chosen by Him to be on this journey with me. From the medical team to those who offered emotional support, it really felt like He had already chosen this path and the players. The ambulance officer who collected me at 22 weeks gestation as I bled heavily in the dark of night, he was the husband of a kind midwife whom I first met at my antenatal classes while pregnant with our first baby in a different hospital 5 years ago. A year ago we had moved into the same suburb as the hospital I was admitted to, the hospital that takes on all the high risk pregnancies, so it was easier for my family to come and see me daily. My most favorite midwife began working at this hospital a week before I was admitted. She came and saw me the morning after I was brought in by ambulance. Like a mother she soothed me by gently wiping away my tears with a damp cloth and holding my hand with concern and comfort. And as she found me a shattered mess after our first was born and in SCN (Special Care Nursery) 5 years earlier, again she found me a broken body in ICU and brought me a photo of my youngest daughter who was in NICU. The oncologist who saved my life finished working at that hospital 5 days after our baby was delivered. I am told he’s the best in the country and had the pregnancy progressed as we had hoped he wouldn’t have been the one to perform the lifesaving surgery I required following our daughter’s birth. If I think about the timing, and how quickly the placenta was growing towards my organs, like a rouge tumor destroying what got in it’s path, how within two weeks it went from an MRI revealing it was increta stage to delivery and realising we were at percreta stage with my bladder already compromised, the timing of this delivery was like a knifes edge. Things could have very easily gone another direction with such different outcomes a real possibility.

4. God plants desires in our hearts He can fulfill – I have known for as long as I can remember that my life’s biggest goal was to be married and mother to four children. Thinking back to the uncertainty I carried for many years over whether this would actually be a reality, not knowing if scars from a previous assault had robbed me of my dreams, I can now say with certainty God doesn’t plant seeds of want within us that He cannot provide. It might not come about in the way you had expected or anticipated. However , He has your desires already written into His plan. I did get my husband and four children, they came at a huge physical cost and the road was emotionally brutally challenging, but I am where I dreamed I would be.

5. My wedding vows hold true in the harshest of settings – When we married, my husband and I promised each other that in sickness and in heath we would stand by each other. This pregnancy has taught me that these vows will not waver. Tirelessly my husband cared for me as my youthful energy raced away and my body began to fail me. He showered me, dressed me and placed me back in bed each night. As I lay in bed holding onto our baby growing inside me, unable to move through the weight that any movement might spell the end as heavy bleeding never subsided, he held my hand. As I became unkempt and fragile he still loved me. He didn’t see my legs becoming scarily skinny as my muscles unused withered away, nor did he see my hair become a nest as I could not groom myself. He brushed my hair, he carried me, yet he still saw beauty in me. Sheltering me from his own fears, he held me tight through mine. And when after our baby was born and  I was finally able to stand up again and see what I had become, he showed me that he too had unruly pubes grown in solidarity. And we joked about how if we were able to love each other at that point we would likely start a fire! I know he has a fire for me in his heart and I know God brought us together through meticulous planning and possibly some divine intervention. And now we know our family was assembled to live through God, He has surrounded us with our Church family and given us each other and then blessed us with our four miracles.

Each pregnancy has taught me many things. I am stronger than I knew. I love more than I could have ever imagined. I am more blessed than I believed possible. And through the pain and tears, the heart swelling sweet moments and joy, I would live it all a thousand times over to be blessed with the four little beings that call me “Mummy”.

“You’re a good oven!” I was told after our third baby was born, a healthy roly-poly bundle of 4.02kgs delivered at 38 weeks gestation. “You grow babies well, most prems don’t have such good coverage at 26 weeks gestation”, I was informed after our fourth and last baby was born, three months early and weighing 1.2kgs. ‘I am good at growing babies’, I thought to myself proudly, then looking at my new scar running vertically down the length of my abdomen I corrected myself. ‘I was good at growing babies’.

Now ‘uterus-less’, (see Inside My Womb) barren bar two functioning ovaries, I knew with definite certainty that my baby making days were over. I had only wanted 4 children, I am lucky to have 4 children, but it wasn’t my choice to lose my uterus and its parts and accessories. Despite the obvious questions husband and I now consider, like ‘Is my vagina the same length sans a cervix?’, and still in recovery so unable to test out any hypothesis just yet, there are deeper feelings I am gradually mulling through as I process the events that led to our littlest’s preterm birth.

Nearly 8 weeks post birth and its about the stage where my maternity clothes are becoming too big yet my regular clothes are still too small. I am in lucky the cooler months are here as track suit pants and leggings are a comfy in-between option. Usually I would have a bit of a cry at packing away my pregnancy attire and husband would console me saying “We might have another”, giving me a glimmer of hope we could add to our brood. But this time, even if we considered having another baby, unless we enlisted a surrogate this is never, ever, ever going to happen. So with a sigh I offer up the suggestion we eBay what is still in good nick and clothes bin the rest.

But what do I do now my baby making days are over? Being ‘uterus-less’ does have its perks. No periods, I can wear white without worry. We had fun watching Miss 5 and Miss 3 using all my no-longer needed pads as ‘nappies’ on their dollys. And ‘tampon-art’, where we dipped tampons into paint and holding onto the string flicked them onto paper, did provide an afternoon of entertainment. Yet I still question, ‘Am I still woman, or am I just woman-ish? Will husband find me attractive now I am officially sterile?’.

I was really good at making and growing babies. And mothering has come naturally to me. I thrive on devoting myself entirely to my children and watching them flourish and grow. But this time I am forced to close a very big door on any future possibilities of becoming a mummy again. So I take every opportunity to breathe our baby in as she continues to grow in NICU (Neonatal Intensive Care Unit) edging closer to her release each day. I observe the sweet subtleties a newborn’s expression provides. And I love our littlest with the biggest love.

A door may have closed, and it will take some time to fully comprehend what this truly means for me physically and emotionally. But another door has opened. I will never have to watch what I eat again following the strict pregnancy food guidelines in angst. One day I will be able to enjoy wine with dinner, but for now I am enjoying providing milk for my baby (see Boobie Banter). And now our family is finally complete I will never worry if I am going to be blessed with the four healthy happy children I have wanted my entire life (see Is Anyone Listening?).

After our littlest was born and we were informed we were both lucky to be alive, and after my time spent on Women’s Health Ward and meeting many fragile new mums at NICU, its amazing what women endure to procreate. ”Pregnancy is the riskiest thing a woman can do,” a doctor recently informed me and I know that to be true after the terrifying complications our final pregnancy brought us (see The Top). I am grateful to now be able to simply enjoy the beauty of motherhood and mothering the children I have. I am where I have wanted to be since I was a little girl, mother to 4 precious beings, and after holding our tiny baby snugly to my chest in NICU, then coming back to giggles and run-cuddles from my three at home, I truly know with absolute certainty, I am the luckiest.

Having breastfed three babies beyond 12 months (all my own of course, although I could have made a comfortable living as a Wet Nurse), I might be considered a bit of a breastfeeding veteran by some, Master of Milk if you will, Conjurer of Colostrum. Each baby of mine has fed differently; my first a comfort sucker, my second the efficient feeder, my third my longest feeder loving his breast friend until bed bound with pregnancy complications with our fourth it became apparent to both of us our breastfeeding journey together was over. Feeding my fourth, a 26 weeker tiny premmie was again completely different.

Being a NICU (Neonatal Intensive Care Unit) mum takes the milking demands to a whole other level. Being hand expressed the day after surgery, my lactation consultant and I, in my drugged up delirium, both excited by the 3mLs I produced isn’t exactly the dream start to breastfeeding any baby. But circumstance dictated that this is how it was to be until my baby was finally big enough to suckle at the breast. Of course it didn’t mean I was taking my lactation consultant home with me to hand express milk three hourly whilst I watched tv, slept and tried to recover from surgery. Once I had enough strength I took over milking duties in full. After hand expressing and using the hospital pump myself, pretending during the demo to know what a flange is, I was welcomed home with my very own pump and pumping station.

Instead of a bassinet filled with cuddly love I had an expressing machine at my bedside and a container of Milton steriliser and pump parts, as well as a stack of plastic cups ready to be filled. I carefully set pumping alarms, noted each expression session and charted the amounts I produced. I delicately timed any and all outings around my next expression session. When out I tried to avoid mums with babies and white t.shirts, any hint of a baby cry and my breast wept an offering of milk. But the day came when I needed to be at hospital more than a few hours and so I was forced to chose between exploding breasts, possibly affecting my well earned milk supply and using the milking room in NICU.

Braving public pumping I knocked on the door and quietly entered the room. Mums turned and nodded as they held pumps to their breasts. We were all here for the same reason, we all needed to make milk for our NICU babies. Finding an empty seat, table and machine I quickly attached the parts and hooked myself up to not one but two machines. This might seem greedy but I am incredibly time poor; as a mum of four this comes with the territory. Throw in limited access to babysitting and needing to visit my littlest in hospital around school runs and I had less time than ever. And whilst my machine at home is a double pump, the hospital ones were only single pumps and frankly I didn’t have the time for single pumping. I have considered speeding up the milking process by increasing the suction, but after seeing how far my nipples stretch on level 4 I am left wondering what the fuck level 12 does? Does it give you permanently erect nipples? Or suck your nipples through the duck valve, is that wen you hear a quack? Is that why it’s called a duck valve? So I shy away from this option. I fear there will be no going back if I tempt above level 10.

So there I was, t.shirt held up in my mouth to gain access to my boobs, both hands holding the bottles and flange against my breasts, using my elbows to adjust the speed and suction. Now if you have ever expressed you will know the part where the nipple goes is clear, in fact the whole milk catching contraption is see through. So then I am left to wonder if this is what it’s like in a men’s room, eye contact only, or avoid eye contact? I can’t remember which one the movies seem to manifest to be protocol, I’ll have to ask husband about this later. But I assume no chit chat with other mums, no boobie banter? I mean it would be weird to say “Oh I see your right breast produces more milk than your left, mmm, mine too!” Because whilst watching the great boobie race at home is fine for my Miss 5 to commentate, maybe not so much in the milking room. But then I hear some voices, no I am not crazy, some of the mums are talking, about topics I am familiar with. I politely interject and voila I am now immersed in conversation about CPAP, TPN and the like and whilst I don’t know what these acronyms stand for, I know what they mean, we all do as we share this NICU experience.

I finish pumping and begin to hand express the last of the milk as I have been taught. I try to hide the milk spray I make as I attempt to aim my milk flow into a small plastic cup. Again I wonder if this isn’t at least slightly like what happens in the men’s room, a different appendage of course. Then I pen in my milk diary my efforts and label my milk and wash up all my expression session bits and pieces ready for the next pump.

Eight weeks on and our baby is finally learning to breastfeed. I nurse her whilst my expressed breast milk is fed into her tummy via a nasogastric tube. She is associating feeling full with being at the breast and we have even had a few real sucks along with the many practice or non nutritive ones. I still pump at hospital sometimes, but I am a lot more efficient now and even take in my own double pump. I have even managed to work out how to hold both bottles in one hand so I am free to read whilst I pump. With a chest freezer full of frozen milk, I still sit in my bed expressing milk for my baby whom we hope will come home soon. Master 22 months watches and claims “My milk” as he waits for me to fill the cup. I happily off load some milk in his sippy cup knowing our freezer has long ago reached capacity, and if you visit for coffee be sure to specify cows milk if that’s your preference. It certainly isn’t the expected introduction to breastfeeding a baby but the end result will be the same. I know my hard work, my nightly wakings will all pay off when my littlest is on full suck feeds at the breast.