NICU Talk, Uncategorized

Our Red Room Story

My first sons birth had been a dream. After a four hour labour, I sat looking out of the hospital window, watching the sun go down, with my newborn baby in my arms. I remember thinking what a beautiful end to a beautiful day. So peaceful, calm and life changing. A perfect moment that I’ll honestly never forget.

Poor Baby J didn’t get his perfect moment. Born by emergency caesarean at 27+2 weeks, just before midnight, Baby J was resuscitated moments after birth.

I’d heard my baby let out a tiny cry (to my relief) and presumed this meant he was alive, but only weeks later did I understand he was born floppy, and needed resuscitation. I still, even as I retell his story, don’t quite understand what happened in those hours after his birth. A mixture of drugs, high emotions and general shock meant I couldn’t take it all in. But perhaps, in hindsight, that was a blessing.

As I’ve said before, my professional background is not in medicine, so forgive me if some of the terms or details in here are medically incorrect. I’m no NICU expert. Just another Mum who has seen her baby go to hell and back in what should have been such precious early days.

It was hours before I saw Baby J again. I’ll never forget the dimmed lights, beeping of machines and the way the doctors hurried around the Intensive Care Unit (Red Room) in such a silent, calm manner as I was wheeled down those corridors for the first time. Shit, this is serious.

Baby J was at the back of the room, crowded by Doctors and nurses who slowly moved aside as I approached. Seeing him took my breath away. There was my baby, covered in wires, with a tube in his mouth, just lying silently. Not moving. No newborn cries. My poor, poor baby. His skin was almost opaque, his eyes still fused shut, and he weighed just 950g. And yet he was perfect. A tiny, formed human being. He had eyes, ears, a nose, legs and arms. I could even see his heart beating under his skin. My baby.

Jack was placed on an oscillator soon after birth, which I had been told was a ‘last resort’ for breathing. His little chest buzzed from the vibrations of the machine. Over the next 3 days, Jacks fight for life stepped up. His infections markers where incredibly high and sepsis was suspected, so he was pumped with morphine amongst various other drugs to fight it out. Then his lungs collapsed. Followed was fluid on the lungs, then two chest drains in either side of his lungs. Then more blood transfusions. Then more wires. More serious. I struggled to take it all in. It honestly felt like I was in another body looking in on someone else’s life.

On day 3 my husband and I had finally fallen asleep in our room on the ward when we were woken by a knock at the door. It was 3am. The nurse poked her head in and told us Baby J was very poorly, and would we like to come see him. In fact, she said, our consultant insisted we come see him. We made our way to the red room within minutes and walked in to see half a dozen doctors and nursing staff around him. At 3am. That’s when our consultant spoke to us and gently suggested, should we be religious, now might be a good time to get a priest to him.

Typing those words is painful. To think we were so close to losing him takes my breath away nearly 5 months on. But at the time the haze of NICU meant those words didn’t really sink in. Only looking back weeks later did I really appreciate how very poorly my baby was. He wasn’t just poorly, he was on the verge of slipping away. In hindsight, I’m glad that we never knew the real depth of the situation back then. Sometimes ignorance really can be bliss.

In the days that followed we continued to see Jack fight infection; saw little improvement with his breathing; had chest drains removed; consequently had them put back in; placed under a jaundice light; plus his nasal cannulas had rubbed his nose so much that plastics were called to check his eroding septum. Then came the cranial ultrasound. A routine head scan to check for bleeds on the brain. Premature babies were high risk, we were told. And more so babies who were on oscillators, which Baby J was still dependant on. The scan showed a small grade 1 bleed, very common we were informed. We actually weren’t overly worried; it was the lowest grade and would be checked again in a week. It was just another issue in the long list of things that in truth, we didn’t really understand. So much information is hurled out you in all directions that it’s hard at times to breath it in. All we knew was our baby was very sick, but was in very good, safe hands.

Day 10 saw the repeated head scan. Alone, as my husband had gone back to work, the consultant asked if I had my husband with me. When I told him he was working, the consultant said he’d prefer to talk to us when we were both together with Baby J. A cold flush came over my body and I insisted he spoke to me immediately. ‘It’s not good news,’ he began. Words I’ll never forget. The bleed, he explained, had worsened. It was now a right sided Grade 4 IVH. Baby J, he said, would in the very least, have a weakening down the left side of his body. In the very least, he stressed. I now know he was referring to Cerebral Palsy. He also had cysts forming on the brain. At the time all I knew was that I was heart broken. My poor, precious, beautiful baby. Why him? Life was dealing him a cruel hand at just ten days old. I guess it’s a selfish was to think when other mothers didn’t have their babies; and we still had Baby J. But the fairy tail baby dream we had been hoping for just didn’t turn out how we expected. No mother expects that.

Despite the news of the brain bleed; Baby J’s remaining time in the Red Room was relatively straight forward. He suddenly and miraculously starting picking up. His breathing improved enough to come off the oscillator. His chest drains were gradually removed. His blood pressure stabilised. His infection markers improved. And we slowly saw the various fluid bags he was connected to lessen.

We spent 11 days in total in the Red Room. It felt like a life time. But seeing Baby J move to the Blue Room (High Dependency) felt like a small miracle. We didn’t expect to be leaving the Red Room so quickly. Even the Doctors didn’t. Part of me went into frantic panic as to whether the care he’d receive in the Blue Room would match that of the Red. But of course the sheer relief that we were out of Intensive Care over shadowed all other emotions.

Those 11 days of Red Room NICU we’re without doubt the most tense, frightening and stressful moments we were to experience. What followed was a relatively straight forward stay in the Blue Room (High Dependency) before we headed to SCBU (Special Care Baby Unit) Of course we still went through various amounts of stresses for the rest of our time there as any parent does, but at least for us there seemed light at the end of the tunnel for our beautiful Baby J.

NICU Talk

When breast is less…

Breast feeding my first born was a labour of love. My want to breast feed, turned into a had to breast feed, as I was kindly made redundant out of the blue shortly before giving birth. Suddenly, the thought of buying expensive formulas just didn’t make sense when Mother Nature had blessed me with good old gold top. Needless to say, I breast fed Little T until he was 9 months old. He grew strong, he grew healthy and even today, 7 years on, I can count on one hand the amount of times he’s been ill or visited the doctor in his young life. For that, I thank you breast milk.

Fast forward 6 years, my financial circumstance may be somewhat different but from the word go I wanted Baby J to have the same fantastic start to life as his brother did. Throw in being born 13 weeks premature, and once again, want became had. I had to give him those drops of gold.

Breast feeding a premature baby is far from easy. But I was astonished at how my body, with the suddenness of my son being brought into the world, wanted to breastfeed. With the help of a wonderful midwife and my husband (of all people) I was able to express those first precious drops of breast milk less than 25 hours after my emergency c section. Incredible. Yes, I was being milked like a cow from both angles, but it was worth every second.

If only the rest had been that simple. Long story short, despite three hourly expressing, stress got the better of me and I struggled with my supply. My initially willing body had done its job, and was now taking a back seat. ‘Try not to stress’ was the dreaded phrase I heard so many times during our NICU stay. Easier said than done. One of the most over used, ironic phrases I’ve ever heard. In the early weeks I just about managed to keep up with demands, but no sooner did I think I’d got ahead of myself with EBM, the nurses would smile sweetly and tell me his feeds had increased. Pleased as I was, the milk cow inside of me cried. But eventually, I managed to produce enough just enough milk to allow Baby J to start breast feeding. He took his first full feed at just 32 weeks. Oh the mind baffles at these tiny miracles!

We floated along with our heads above the water until we finally left the NICU. I had already accepted the fact at about week 5 that Baby J would have to be subsidised with formula, something which the stubborn side of me was dead against to begin with before common sense prevailed. Yes, he was going to have formula which was against all my principals; but he was still having a fair amount of breast milk from me and I was doing the very best I could. Expressing around the clock with a baby in NICU, young child at home and the weight of the world on your shoulders is plain hard work.

Neurotic expressing continued once we got home, followed by a slight static period of weight gain which my Health Visitor put down to the breast feeding. I was quite aware my milk supply wasn’t the same Niagara Falls it had been with Little T, I felt somewhat deflated by the phrase, ‘because your supply is low’ being brandished at these almost daily weight checks. My strong overall impression was, my HV didn’t want me to breast feed. At this point I was doing one breast feed per day, ‘top ups’ in between feeds if necessary and endless expressing. It seems liked a real contrast to the push towards breast feeding we hear endlessly about. The stubborn Capricorn in me took action with a trip to the doctors and that’s where Mr Domperidone came in.

Oh Domperidone. Marvellous Domperidone. Now whilst I’m well aware that various health related issues are linked to this drug, I simply want to pass on my breast feeding experience with it. For me, Domperidone was a god send. In little over a week my supply went through the roof, from expressing 20ml at a time to 70ml per sitting. When I put Baby J to the breast, I could hear him gulping on full mouth fulls of milk then gently dropping off into a milk coma. A wonderful feeling for any breast feeding Mum. Domperidone to me was a game changer. It made me believe again in what my body could do and gave me so much joy in seeing my son feed. But what comes up, must come down. Once my 30 day supply came to an end, so did the milk. A real blow. Hugely frustrating as it was that I couldn’t continue with the prescription, I had already anticipated that our relationship would come to an end.

With days of finishing the course of Domperidone, my supply started to dwindle again. Baby J was still rooting after a feed. Back to square one. As a last ditch effort, I decided to turn to Moringa supplements, as recommended by a breast feeding consultant. So knocking back these little green pills twice a day, as well as taking fenugreek tablets washed down with litres of oat milk, became my new habit. I’d actually been taking fenugreek for quite some time before Domperidone with little effect, but since I’d bought them, I figured I’d finish them.

Amazingly, after a few days, my milk supply increased again. Not quite to the dizzy heights of Domperidone, but near enough. Moringa you beauty. I’m not sure whether this is pot luck or coincidence, or whether actually I might be onto something, but this little ritual seems to be working for me. Breast feeding hasn’t come easy for me this time around but whilst I’m able to produce enough even for one feed, I’ll continue to keep feeding my son these precious drops. For Baby J, the medical complications that came with prematurity are my driving force behind making sure he gets the protection and goodness of breast milk. Brain development being at the heart of it.

One day I may look back and question why I’ve flogged myself silly to enable me to continue to breast feed, but right now it matters. The body might not be willing but the head is determined to prove it wrong!

Mum time, NICU Talk

What I Know Now.

Rewind 18 weeks. Back to the time when Baby J was safely snuggled up in my belly (sob) and life was seemingly perfect. Ask me what I knew about premature babies; ask me about NICU? My answer would have been nothing. Absolutely nothing. Apart from the fact they were tiny little red dots, and wore equally tiny knitted hats. You read about them in magazines. And they happened to other people. Not me. I was young, fit and healthy. I had a carried a baby to term before. So definitely not me.

Well what a learning curve the last few months have been. What a cruel, fast curveball that had been thrown. I’d entered a whole new universe that I’m still desperately trying to navigate around, and to be honest still feel swallowed up in most of the time. As humans, it’s sometimes good to find yourself in new or testing situations; it can bring out beautiful traits in you which you never knew you had; but on the flip side makes you sink to a whole other level. The ying and yang of life perhaps?

As I was drinking cup of tea number eight hundred this morning, whilst Baby J slept and Little T caused chaos around the house, I realised that as a person I had changed. I had learnt. I had grown. Yes I am still lost in this whole new world of premature babies, but I am slowly finding my way and coming out the other side. Dealing with things better. Now quite so fragile. No longer sat on the brink of tears. So this post is really a reflection of all that I have learnt in the past few months. Little as it may be.

  1. It Can Happen To Anyone – yes you, and even me. Sometimes, no matter what we do to keep the most precious of lives in our bodies, when nature and life takes hold, they really take hold. As a fit, healthy, 31 year old mother of one with no previous history of pregnancy related problems, it shouldn’t have happened to me. I have never smoked. I cut out alcohol. I was active and always ate well. I did everything I could to look after this tiny life, didn’t I? Then one day, out of the blue, my waters went. No waterfall gush. Just a constant gentle trickle. Then came the infection. And I didn’t even put two and two together. I’ve often asked myself why me? What did I do wrong? But the answer is I didn’t. The body can work in a funny way at times, and as my consultant told me, when the body decides to go into labour, into labour it shall go.
  2. It Wasn’t Your Fault – following on from the above, I don’t think there is a single mum out there who hasn’t been consumed by guilt for their little one arriving way too early. For me, consumed didn’t cut it. Paralysed more like. I’d go as far to say I hated myself for it. What had I done in the days leading up to the birth to cause this? Why had my body failed my son? I had one job to do, which was to carry him safely to term, and I had failed. Stupid, stupid, body. Stupid, stupid me. Now this plagued me for a long while. My mental health suffered. Then one day, as I sat next to my sons incubator and looked around at the other mums in the unit, I saw these loving, caring mums. These doting, heartbroken but strong and caring mums. All willing their babies to get better. All willing their babies to live. Did I blame them for their baby’s prematurity? No. Not at all. Not once did I blame them. So why was I blaming myself. I wouldn’t have judged anyone of them for what happened. Would they have blamed me? No. It took a long time to accept, but it wasn’t my fault.
  3. It’s Okay To Fall Apart…In a funny way, as I write this I feel a little embarrassed. A little uncomfortable almost. Composed as I am right now, I have to admit, only 3 months ago I was a wreck. A total, utter wreck. I fell apart. I wasn’t that strong mother I was supposed to be. Having a premature baby mentally affected me. For all the reasons above, and the reasons below. And more which I won’t elaborate on right now. The guilt of failing my son; the torture of seeing him suffer; the pain of leaving him in hospital day in and day out; for not being there for my other son at home; for being the ghost in the room. You get the picture. But in reflection, I had to fall apart. I had to grieve. I had to grieve for my lost pregnancy; for the life my son should have had; for the brother I had denied my son of having; for the son I had denied my husband of having. I hit rock bottom, and couldn’t function unless I was sat beside Baby J, watching him silently in his incubator. Watching him cling to life. But now, looking back, even with that twinge of embarrassment there, I’m glad I did it. I’m glad that I dealt with those emotions in most rawest of ways. I almost feel like I got them off my chest. Now I can honestly say I feel stronger, less fragile and mentally able to cope. Ready to cope with the future and accept what has already happened.
  4. …And Also Okay To Get Help – I didn’t just fix. I didn’t magically wake up, smell the coffee and just deal with life. I cried. I cried all the time in fact. I spoke to my husband (who knew he was such a pillar of strength!) I was honest. I repeated the same conversations on loop. I spoke to professionals. I had counselling. More than anything, I just knew I couldn’t go on like that. I couldn’t function in life and be a mother, wife, daughter, friend feeling the way I did. So I got help. Actually, that’s a lie right there. My husband got me help. He recognised my depression; he let me do the things I needed to do to keep functioning. When I needed to go to see Baby J at 3am he didn’t stop me. He put up with my funny little coping mechanisms. But importantly, he got me help. He spoke to my Health Visitor in private and put me in touch with a fantastic local company who specialise in Post Perinatal Counselling. Just knowing the support was there; that I wasn’t alone, was a step towards feeling better. As a breast feeding mum, there was no magic pill to summon the smile back on my face again, or to make it all better. So counselling was the route I took. I’m glad I dealt with it early, but I know some people aren’t able to or aren’t so lucky. But for me, it was the life line I needed to get my life and sanity back, and to deal with the sadness which over whelmed me.
  5. Step Away From The Google Bar – Baby J had a horrendous start to life. General prematurity issues aside, he had to fight for the first few days of his life so very hard. Harder than any baby should. Collapsed lungs, chest drains, sepsis, brain bleeds – need I go on. I needed answers. I needed to know what they all meant; what quality of life my son would have. I spoke to the Doctors regularly. But my brain would turn in a foggy haze and I’d struggle to retain what they told me. No worries, Google was always to hand. Especially in the dead of night when my brain wouldn’t switch off. Only in turning to trusty Google, I gave myself the fright of my life. I scared myself silly by what I would read. In reflection, I attribute it as one of the main causations of my anxiety. Now I’m no medic, I have no medical back ground or head for science. I didn’t know the in’s and out’s of these matters. Yet in a quick, generic Google search I thought I knew it all. Forums of other people passing on advice. Forums of other people, who if truth be known, are no more qualified to pass on information than I. Commenting on other peoples situations may bring reassurance, but also a lot of anxiety. After all, no one knew the complexity of my sons health. God knows even the Doctors didn’t quite know. So finding answers to my questions through Google, forums and the like was always going to end in tears. And for me it did, tears of anxiety, frustration and general fear as Google has told me the outcome of my sons future. It was only through further conversations with consultants and doctors, you know, real life professionals working in these fields, that I realised more often that not, my Google led knowledge was wrong. Or it just didn’t apply to my sons situation. Knowledge is power, but only if it comes from the right sources. For me, this means my medical related Google searches are a thing of the past. Do I miss them? Not one bit.
  6. People Are Wonderful – Yes truly, very wonderful. Not just the consultants, Doctors, nurses, specialists, army of physios and the like. It goes without saying that these people are angels in disguise. But the other mothers around you. The dads too. The family who help you out when you need it most. The husbands. The partners. The friends who rally around. The friends who you’ve lost touch with who offer to drop everything to help. The sheer scale of human generosity is brought out when times get tough. I have been touched by the amount of people who have done nothing but show their genuine, wholesome support. And the strength of the other parents around me. It’s a shitty situation to be in becoming the mother of a premature baby (excuse my French) but it sure as anything opens your eyes to the kindness of others. Be kind back. Be kinder in general. We owe it to each other.
  7. The Path Doesn’t End Here – Leaving the NICU was huge. It was the day we’d all been looking forward to; the day we never thought would come. But once we left the sanctuary of the hospital ward, a whole other journey awaited us. Being home certainly didn’t bring with it relaxed mornings of watching Jeremy Kyle in my PJs, or hitting baby yoga with friends. Instead, my diary is jam packed with appointments for Dieticians, Health Visitors, Ultrasounds etc. Not a week goes by without an appointment for Baby J, in fact I’d say it’s fair to say we average three per week. Obviously, in our individual case, we have certain areas of his health to follow up. We knew we had a long road ahead; a road that extended way beyond our NICU stay. It’s difficult; it’s testing; it’s exhausting and never ending. And yet again goes hand in hand with the fact that prematurity just sucks!
  8. I Know Everything and Nothing – My knowledge is slowly building. It stretches beyond the fact that preemies are tiny and wear knitted hats. I can tell you about CPAP, read the monitors that Baby J was hooked up on for so long, write a novel on the importance of hygiene in a baby unit, and tell you why I do the exercises that the Physio taught us for Baby J on a daily basis. But I also still don’t quite understand the medical terms I hear so often around me, or why exactly Baby J has the health issues he has, or tell from an ultra sound what the problem is. I’m not a Doctor. Nor do I have a crystal ball. I can’t predict the future. No one can. What I do know is I have a son who fought for his life from the very first breathe he took. He was born too early and has problems to face. BUT he is here! As he snoozes gently in his moses basket next to me I can never lose light of the fact he is here. And not everyone is so lucky. I will never understand the level of grief of the parents who lost their precious babies in the NICU. In so many ways, we were the lucky ones. And for that I am forever grateful.

Love and light – Baby J’s Mum x IMG_0234