The Delivered - Part 3

This post really continues on from part 1 here. Over the last few weeks I have been thinking more about what had happened to me in the days after Joseph's birth and what could have made it better.

On the Sunday, after my somewhat ill-fated breakfast, I tried to settle down with a book. I couldn't think or concentrate, my head was all over the place, and I felt lonely. There was no one to talk to. Visitors weren't allowed on the ward until 12, so my husband had to stay home. There was no communal sitting room and the cafeteria was an inconceivable distance away in my current condition.I had been advised not to go to the unit that morning as Joseph was having a number of x-rays and other procedures done. So I sat.

A midwife came in to do her notes and check up on me, see how my scar was doing etc. As we were talking she looked at me and scowled.

"You are not wearing a bra", she hissed. "Um, no", feeling like a naughty schoolgirl. "My milk has come in and they are huge, my maternity bras don't fit." She went a funny colour and started to rant "We tell you mothers all the time you must go and get fitted before delivery, you'll never learn will you, its so important to have a well fitting nursing bra".

How I didn't cry I will never know. I grinned "yes, you are right, I never should have agreed to a section at 27 weeks until I had my bra sorted out, how deeply inconsiderate of me. You know what, they should have a Marks and Spencer bra fitter in recovery shouldn't they?"

She barked "well you should have got your mother to fetch you one." At that point tears did sting my eyes. Not only had she reminded me of how awful this situation was, but that comment just reinforced that I was completely alone. My mother was in Australia, and if she thought for one second I was sending my husband out to buy me a bra, she could go and get me one herself!

She made her retreat, muttering an apology. I sat down and had a little weep. Then there was another knock at the door.

A fresh faced woman came in clutching a plastic bag. She was the Bounty lady. Had I known more about it, I would have told her to go away, but she made it sounds like I had to talk to her. She started asking loads of questions about my baby, and even pretended to care, all the time pushing this marketing material at me. This bag contained loads of leaflets and samples, all things of no use to me at that point. She wanted me to sign my name and give my details, and of course, being gullible, and just wanting her gone, I did sign her paperwork. Cue many annoying pieces of marketing material and the odd phonecall in the months to come.

But worse, when she was gone. I opened the bags. I should have known better. As I got out the enormous nappies that could have been a sleeping bag for my tiny little baby, I just cried and cried and cried. I couldn't stop.

It was all so unfair, I shouldn't have to deal with these people, with their agendas and prejudice. I didn't need leaflets telling me how to latch my baby, or enormous disposable nappies supposedly for newborns. I didn't need a nursing bra, millions of women manage to effectively feed their youngsters without them.

All I needed were some friendly faces, a cuddle, my husband. Most of all, I needed my baby.

Joy

Its been a tough week. I found the Fight for Preemies Day a lot more emotional and heart-wrenching than I ever expected. It really brought it home how many families have been through, and are going through, what we have, and how hard it is. The journey through NICU is one I wouldn't wish on anyone. For the past few months I have been feeling stronger and more positive than ever, and had slight setback this week, feeling a bit down, and traumatised again.

And then, we had the flood. Not a massive one, just turns out that the pipe that connects my sink and washing machine to the outisde world was held together with a little big of concrete render and newspaper! The newspaper perished. Unfortunately it was too wet and soggy for me to look at the date on it!!!  So we had that to deal with.

And then, if that wasn't enough, my phone wasn't working. Now with the interweb and mobile phones it shouldn't be an issue, however this week is chemo week. My mum has chemotherapy on a Thursday and is often sleepless and as she is in Australia and I am here, then its nice for her to be able to ring me in the wee hours of the morning.

So yesterday was an admin day, sorting out the plumber (cute, by the way), the phone (easy fixed, problem at the exchange apparently) and talking to mum (as well as can be expected). So today I decided Joseph and I needed a treat.

We took a tram to Manchester, where they have traditional European markets. It gets bigger (and better) every year. Last year we missed it as Joseph was small, and I felt the risk of picking up bugs from the crowded populace was not worth taking, and the year before I was pregnant. I still went, but no gluhwein for me! And I avoided a lot of the other food as well, just to be on the safe side.

Joseph had a brilliant time, taking in all the sights, and eating! We saw an old friend who runs a fruit stall and he gave Joseph a banana, which he ate. Then off to the Dutch section and Joseph had an Olliebollen, a dutch donut with raisins. Then we shared a huge Wiener Schnitzel and potatoes. Then he had a skewer of strawberries, marshmallow and grapes smothered in chocolate. He ate everything! Not bad for the child who would never eat!!!

And then we came home, he had a nap, woke up, and then started again, 4 fish fingers, a plate of chips, peas and corn, finished off with a ginger biscuit (homemade, tonight was a helicopter! Why don't I own a gingerbread man?)

It was lovely have some mummy and son time, no interruptions, no stress, just lots of lovely sights, sounds and of course, food!

To My Little Fighter

If you are joining me today for March of Dimes Fight for Preemies Day, welcome, and I look forward to reading many blogs today, celebrating the special tiny lives that have touched us.

Dear Joseph,

When we found out we were pregnant we were stunned, and delighted. I'd had lots of problems, which I'll tell you about when you are older, but I didn't think I would ever be blessed with a baby.

It was January 26 2009 when I saw you for the first time, just 12 weeks old, you were moving around all over the place, you were tiny, beautiful and perfect. I could see your spine, your arms, your legs, your head, I loved you so much and couldn't wait to meet you.

But, my darling, from 16 weeks I knew there was something wrong. I felt like I was trapped in some sort of movie, no one believed  me. I wonder if you heard me, wonder if you remember, that every day in the shower I would talk to you, put my hand on my belly and say "get ready to bail, my belly is turning into a pressure cooker, get ready to fight".

At 27 weeks, I was told you were to be delivered. I was scared. I talked to you. Do you remember? I am sure you heard me. I put my hand on my belly and I said to you "darling child, if its not your time, just go. Don't wait, don't hang on, if you need to leave to go to your home in heaven, you leave, we'll be ok your daddy and I." I felt you give me the most enormous kick I had ever felt. I am sure you were thinking "just shut up mother, I'm ready".

Two days after you were born, I was able to see you properly, I could walk a little, I wasn't as sick anymore, and I watched as the doctor examined you. You had a board on your hand to keep all the tubes in, they used them to feed you and give you medicine. You hit the doctor around the head! Hard! Startled, he took a step back and said "well, you have got a fighter there!"

I hope you don't remember this but on day 5 you got a very bad infection, they told me you might die. I was very scared, and I loved you so much more by then, if that was possible, I couldn't bear it. I spoke to you for an hour. I told you what the doctors were trying to do, and how you had to help the doctors put the line in, to show them the right way. They had to put a tube in your hand right down into your tummy. They had tried three times, but couldn't get it into you.

And on the fourth time, it went in. The doctor was amazed. I wasn't. I knew you were listening to me. I knew you could feel my love. And I think you loved me too.

As our time went on in the hospital, we talked more and more (ok I talked, you listened), we fought together, we laughed together, we sang together. When I was finally allowed to hold you kangaroo style, I felt whole again. I felt like your mummy.

It seems like a lifetime ago, and only yesterday. Well over a year has passed since you came home. You have grown in so many ways, you are strong, you are funny, and you are loving. I am so priveleged to be your mummy.

Most of all I am so proud of you for how strongly your fought in your time in hospital. You are a fighter, and now its my turn, to fight for preemies, so that mums like me can get their happy endings, or better still, never have to know the pain of having a baby born too soon, too small, too sick.

All my love

Mummy

I'm no dummy

When I was pregnant, my husband and I would chat about things that we would and wouldn't do when we had a baby. We both agreed, that ideally we wouldn't use a dummy. I hadn't had one as a baby. On the other hand, Corey had had the awful memory of his dodi being taken away. He had had a number of awful orthopaedic procedures, and back in the "olden days" dummies weren't permitted in hospital. His admissions would last for weeks, and he would have to go through the trauma of handing his dummy  back again and again.

Once Joseph was born, I knew that he would need a dummy. In the care of neonates a dummy is important, to help develop the sucking action they should be practicing in the womb, and they also help maintain air flow when CPAP is being used. (I won't go into it here, its probably worth a post of its own)

So at three days old one of the nurses asked me if they could introduce a dummy, my husband was horrified, and a quick run down of why it was important was given by the nurse. Delicately, the nurse took the smallest dummy imaginable and introduced it to my baby.

Can you believe a 1lb 7oz baby (and by then he was even smaller having lost weight) could be opinionated and stroppy. Well, the child must have been listening in utero as he absolutely and steadfastly refused it. We tried many times, and all agreed that it just wasn't worth the stress to the baby, the mother or the staff!

A couple of weeks after discharge, Joseph developed a hernia, in his groin, known as an inguinal hernia. One awful night his scrotum on his left side had swelled up, he couldn't poo, and he was in agony, so we went to our local accident and emergency department at the hospital. Once there, a doctor came to examine him. She took one look at me and said "where is this child's dummy?", and I explained he didn't have one.

Well, I have not had such a dressing down since I smeared paper glue over my desk in year 7. She went mad "do you not realise how important dummies are in the care of neonates? He is distress, he needs a dummy." I explained that really, it was Joseph who needed the explanation not me, as he always had rejected them. "Rubbish" she said, basically saying my prejudices had got in the way.

Being traumatised by this time, I went home crying that I was harming my child by not giving him a dummy. The next day I went to the pharmacist and I bought cherry dummies, I bought flat dummies, I bought tiny dummies, and over the coming nights I tried to introduce one. Every time, Joseph took it, did three sucks, then launched it!!!! Its quite amazing how a still small baby can launch an object a very long way.

I thought a dummy was meant to be a comfort, but this was becoming a battleground! In the end, I just gave up.

Funnily enough, when Joseph was just over 6 months old he went back into hospital for his hernia surgery, and I took some dummies "just in case", and used them!! He sucked away quite happily when he was in pain and discomfort, and just as quickly gave up the habit.

Joseph now uses a blanket as his dummy, he spends ages looking for "the right corner" and sucks it to an inch of its life. Despite frequent washes, it always manages to look tatty and disgusting.

But he's happy!

Universal Child

I heard this song for the first time tonight, On Strictly Come Dancing. How apt it is for all our babies born too soon, too small, too sick

Universal Child - By Annie Lennox

How many mountains must you face before you learn to climb.
I'm gonna give you what it takes, my universal child.

I'm gonna try to find a way to keep you safe from harm.
I'm gonna be a special place, a shelter from the storm.
And I can see you, your everywhere, your portrait fills the sky.
I'm gonna wrap my arms around you, my universal child.

And when I look into your eyes, so innocent and pure.
I see the shadow of the things that you've had to endure.
I see the tracks of every tear that ran ran down your face.
I see the hurt, I see the pain, I see the human race.
I can feel you, your everywhere, shining like the sun.
And I wished to god that kids like you could be like everyone.

How many tumbles must it take before you learn to fly.
I'm going to help you spread your wings, my universal child.

I can feel you everywhere shining like the sun.
And I wished to god that kids like you could be like everyone.

The Delivered - Part 2 - a happy post

In the UK the common practice 6 - 8 weeks after you have had your baby, is the post-natal check up. This normally happens with your GP and/or practice nurse. I had a laugh with my GP, I'd gone to see him at 2 weeks post natal to clear up some paperwork and to discuss my medications for the blood pressure. He said he'd not be allowed to do my check, on the basis that he was a man. I was laughing very hard, my GP is a trained obstetrician!!! And its not like anything happened down the "lambing end" so he wouldn't be required to even have a look down there!

However, if you've had a very complicated delivery you might be offered a follow up with your consultant at the hospital. I was asked to have both. So 7 weeks after Joseph's birth I was called for my consultation with Dr P, the head obstetrician. Joseph was, of course, still in hospital, but by this point was doing very well, just small, and learning to feed.

I was asked to go to ante natal, there isn't a post natal outpatient waiting room, so I had to sit with the pregnant women, which was fine, by that point I used to be a bit "other", a bit "different". My appointment time was 9.30, but it was a running joke amongst myself and my friends that this is a "required turning up time", you could be seen at any time. You could probably happily add an hour!

So I am sitting there, with my husband, quite chirpy having had an early snuggle with my baby, and who should appear but Charlie, the big Ghanian assistant doctor during my section. He trotted over and scooped me up for a big hug! We had a quick catch up, then the colour drained and he said "um what are you doing in ante natal?" I grinned and said "its ok, I've not got knocked up just a post natal check with Dr P" relieved, Charlie grinned and went on his way.

So then, who should appear but Dr A, she handled my medication and blood pressure issues post natally. She also had seen me antenatally and she had felt very strongly I was a good candidate for pre eclampsia. I had, at some drug induced hazy point, declared my undying love for Dr A, to which she replied with good humour "I love you too Kylie!" She came to speak to me, her face cloaked with worry "as ever, a delight to see you, but what are you doing here!", again I said "post natal check, because I'm complicated!", she too gave me a hug and then disappeared, the relief, again, quite obvious.

Still waiting, yet another doctor appeared, this one, Dr Abby, had not been involved in my care, we'd just got chatting in the corridors. He was drop dead gorgeous, about 26 or so, tall, dark and good looking. He saw me waiting, and positively sprinted over, gave me a massive hug, and a kiss! (by this time the pregnant ladies were all in stitches wondering how I'd become such a local celebrity!), and he said "good lord woman, this better be a post natal check, we'll all have high blood pressure if your pregnant again!"

One of the things I learned during my time in hospital with Joseph, was just how caring the doctors are, and how much they invest of themselves in each complicated delivery. I was amazed the number of times a doctor who had treated me would come up to me in the cafeteria or outside the neonatal unit and ask me how things were going, and more importantly, how I was doing.

I found the community of the hospital, and the care of each and every person, comforting and warming. Even the cleaners knew me my name, and would smile when they saw me.

And now, when we go back for follow up consultations I see a lot of the same faces, and see the delight when they catch a glimpse of my health, smily toddler.

This post is, however, for me, tinged with sadness. Our local maternity unit and neonatal unit has been marked for closure, despite reprieves from time to time, it looks like it will close next year. Women will have their babies in a large, shiny hospital. But it would be a such a shame to lose such a close knit community, which, truth be told, played a huge part in my emotional and physical healing.

The Delivered

Image courtesy norfolkdistrict FlickR.com

Joseph was born on a Friday, I had to spend Saturday in the delivery suite hooked up to all my lovely monitors and catheters, until Saturday afternoon when my lovely Dr K finally said "right, catheter out, lines out, you can go up to your room". I was taken to ante natal, into a private room which would be my home for the next 6 days. There are three sorts of people in our antenatal ward. Expectant mothers with complications of pregnancy, expectant mothers with very serious social problems who need to be looked after, and "the delivered", whose babies cannot be with them, but they are not well enough to be discharged home.

It isn't easy being a delivered mother at the best of times, but when your baby is not by your side, its pretty horrendous. Biologically you are going through all the things an ordinary new mum is going through in that immediate post natal period, that period of elation, followed by crushing lowness (baby blues is such a ridiculous term, its more than feeling "a little blue"), your milk coming in, the constant feeling of burning and fullness, and the post delivery bleeding, and if you've had a section, the pain and discomfort of your scar.

In our hospital in both post natal and ante natal you are expected to get your own breakfast. Which, if you are a normal expectant mum, or a delivered mummy, is no biggie, afterall pregnancy is not an illness, and post childbirth isn't either.

So on the Sunday morning I woke up early, expressed, and was looking forward to my breakfast. To my dismay it was all served in big containers with cereal, and huge jugs of milk. My hands were bruised and battered, I still had a canula in in case of emergencies. I had just had my heparin injections and my legs felt weak. I wrapped my hand around the jug handle, and nothing happened. I had nothing left. I couldn't even put milk on my cereal, and the tea was served in massive stainless steel pots. There were no staff members around to help.

One of the mums was standing at the trolley, so I asked her if she could help me, which she was more than happy to do. We got chatting, she'd had her baby on Friday too, and she was knackered. She'd been feeding all night, and exhaustion had reached a peak point. She asked when I was due, and I explained to her that I had had my baby but was put in the "room of the delivered" as he was born at 27 weeks, and they didn't want me to be tortured by being surrounded by new mums. I watched the colour drain from her face. She quietly got my breakfast ready and took it into my room for me. I didn't see her again.

Many months later I was at baby group on a Monday. I was, at the time, very teary, always on edge. My post traumatic stress disorder had been identified but wasn't yet being treated, as I was waiting for a psychiatric referral. I got chatting to one of the other mums whose little girl was enormous, lying on her tummy lifting on to her arms, something Joseph at the time, was still 3 months off doing. We talked about our babies birth dates, they could have been twins..... then her face flashed with recognition. She was the mummy who had helped me.

She looked at Joseph with amazement, and then a tear formed in her eye. She said "I rang my husband after talking to you that morning. I felt so bad whinging about how tired I was when you were going to lose your baby." I went white, I started shaking. "I'm really sorry", she continued, "but I thought a baby born that early would die." And whilst that exchange was, at the time, painful, it was positive. She had become educated. That early babies can not only survive, they can thrive.

I still strongly believe that premature delivery and birth is a taboo, almost as much as pregnancy loss. We don't talk about it as a society. In my pregnancy books and magazines, its sometimes mentioned, sometimes there are even articles, a before and after picture, a birth story, but we don't talk about beyond the glowing success stories.

We don't, as a community, and I believe treating professionals don't either, talk about how we deal with not just the babies, but the parents. My husband was treated the same as any other partner in that hospital. He had to go home at 8pm. I was left, alone, in my little room, with my breast pump and my ipod, my baby a ten minute walk away (and for many other mothers its worse, and I've talked before about babies being accommodated many miles away from the mother).

My husband once, in a heated moment, complained about my "premmie crusade" and how I act like I am the only person in the world who has had a premature baby.

That's where he is wrong. Although there are many, many high points on the premmie journey, they do not compensate for the crushing, frightening lows, the hurt and the trauma that carries on, usually for years, that never truly goes away. If 1 in 8 babies are born premature, sick or small, that means 1 in 8 mothers have gone through and are going through this trauma.

I am on a crusade of sorts. But not to say "look at me, I'm special, I've had a tiny baby", but to increase awareness, to impart to others some knowledge of what its like to have a premature baby, and to help all mothers support and care for one another.