Goin on up to the Spirit in the Sky

When I first found out I was going to be the mother to a premature baby, the first thing I did was go to the chapel at the hospital. Our chapel is very simple, but a quiet refuge in a busy hospital. It is also extremely thoughtfully placed right near special care!

I became well known, padding down at all hours, to write in the prayer book, or leave a little note for the chaplains. Funnily enough I didn't call for a chaplain to come to see me the night I was so frightened awaiting my c-section, because, this wasn't an emergency! Not in my head, I was just having a small early baby and to would be fine! Fine!

Anyway, having lurked around the chaplaincy service for 3 months, I have now been asked to do a talk at their conference. "Spirituality and the Patient Experience" is the topic, and its such a hard thing to speak about. The age old questions of "what is spirit" and what differentiates spirituality from religiousness float around in my head.

To me, the song that means the most to me in terms of my spiritual journey is "I Still Haven't Found What I'm Looking For" by U2, which U2 have always maintained is a gospel song. 

But I guess what we are really getting at is what do people in crisis need in terms of spiritual support. To me spirituality is wholeness, its supporting that part of the person that doctors, midwives and nurses can't reach. To me spirituality and hopefullness were tied in together. It's also the power to deal with the great unknown. To leap with faith, knowing that there is a cushion to fall on.


And that's what I found within the walls of our tiny hospital chapel, and most importantly, the people within it.

Ill-prepared - Life with a Toddler

toddler

Etymology: ME, toteren, to walk unsteadily

a child between 12 and 36 months of age. During this period of development the child acquires a sense of autonomy and independence through the mastery of various specialized tasks such as control of body functions, refinement of motor and language skills, and acquisition of socially acceptable behavior, especially toleration of delayed gratification and acceptance of separation from the mother or parents. The period is characterized by exploration of the environment and rapid cognitive development as the child strives for self-assertion and personal interaction with others while struggling with parental discipline and sibling rivalry. Of primary importance for the nurse is an understanding of the dynamics of the growth and development of the toddler to help parents deal effectively with appropriate nutrition, toilet training, temper tantrums, prevention of accidental injury (primarily from falls, poisoning, and burns), and childhood fears, especially anxiety as a result of separation from the parents. 

 

http://medical-dictionary.thefreedictionary.com/toddler

I am a reader, a researcher, I like to know my subject. When I was pregnant I devoured pregnancy books, magazines and articles. I started to read baby books. I was so excited about being mother to a baby. Now I am not sure whether this is a premmie mum thing, or just a general thing, or specific to me, but I am so not prepared for life with a small.......person.

Like most parents of premature babies, we found Joseph's beginning scary. We were given the worst case scenario, home on oxygen, PEG fed through a tube in the stomach - probably for life, and our first years in and out of hospital with chest infections. I spent the whole of last year with my heart in my mouth waiting for the hammer to fall. I felt so confused when this baby, who I expected to be weak and poorly, was just small. We've only darkened the door of the hospital for routine visits and a minor operation on a hernia.

Now my major concerns are things like coping with teething, dealing with separation anxiety, helping Joseph to explore his environment without a) serious injury b) giving me a heart attack.

Joseph is headstrong, charming, funny, frustrating, infuriating, gorgeous, lovable and kind. He is a person, with a strong personality. I don't know what I expected.....I was not prepared. I feel like I wasted all those delightful baby days being in a state of high anxiety, and now, I have a toddler! 

Properly One

I was really excited when I found out I was due on the 7th August 2009 with my first baby. My husband has a lovely niece, who was turning 8 on the 7th August, and she asked me if I could please please try and have my baby on her birthday! I suggested that closer to the time we arrange for her to come over so we could clean the skirting boards, eat curry and pineapple, and try to bring the baby out!

Unfortuantely, that was never going to happen, and Joseph was born 3 months early. It's only this year that I have really learnt just how long 3 months is! Joseph's "other" first birthday seems an age ago, since then we have travelled to London twice, gone to many birthday parties for friends, and generally been very busy!

And in these last 3 months, Joseph has changed immeasurably. In 3 months he has learnt to commando crawl, proper crawl, eat corn on the cob and chicken drumsticks, pull to stand, wave and dance! He has developed a very funny sense of humour, he is slowly learning words, and he has come on a treat since his first birthday, oh and grown a lot of hair!

I am so very proud of him, my husband and myself. It feels like now we can really put his beginnings behind us, there are no concerns about Joseph's health and development (well, we know for sure after his check up next week at the hospital), and everything is looking very bright indeed.

The Art of Reaching Out

Today is our first local Bliss meeting. Bliss used to be called "The Premature Baby Charity", however is now more rightly known as "Bliss: for babies born too soon, too small, too sick" and encompasses any family who have had a baby who has needed special care after birth, for whatever reason.

When Joseph was born, I was desperate for support. I longed to meet other mothers who had walked this path, to know what I was thinking and feeling was normal, to have a cuppa with someone who could understand my anguish. So many other people "on the outside" couldn't understand why I was so upset, after all, my baby was alive, just small.

At the time, nothing was available locally, I used the Bliss phone line, and their Parents 4 Parents service, for which I am now a volunteer, and I used the message board, when I could bring myself to concentrate at a computer screen. I needed human contact, a voice, a touch.

During the time Joseph was in hospital my main support were the hospital chaplains, and I cannot visualise what my time in hospital would have been like without the chaplaincy service. A friendly cuppa, a prayer, a cuddle. The chaplains used to pop in and visit Joseph, sometimes when I wasn't there, and leave a little calling card to say they had been.

Sometimes, I find, that up here in the North West people don't reach out. I'm hoping to be pleasantly suprised today, however I am concerned that it might just be the "usual suspects". I sincerely hope I am wrong and people use today as an opportunity to reach out, and to ask for help, or have a friendly natter with somoen who understands.

And I am grateful now, that I can be that person, that I am no longer distressed and frightened, just a happy, if somewhat frazzled mother of a toddler!

Rooming in

When you have a premature baby in hospital, one of the rites of passage before you go home is the process of rooming in. Hospitals have a little hotel room, in our case there are two, in the corridor right outside the unit. These rooms have a tv, a little kitchenette (well a fridge and a kettle) and an ensuite bathroom. Your little baby comes and joins you in their crib for a night or two.

This helps the mum (and in some lucky units the dad too!) get used to the day to day care of the baby, the little noises, and to build confidence ready for the next big step, the H word.

This time last year was my first night rooming in. I was taken to the room with Joseph at about 3 pm. Joseph and I sat on the bed and just gazed at each other. We cuddled for ages, and then I put him down to nap. And I did things that I hadn't done in 10 weeks. I watched television. I read a newspaper. I had a cup of tea, with a tea bag, not some powdered rubbish out of a machine. And I smiled.

My husband was not able to room in, as our hospital only has a single bed, but he decided to come in at 7am to check on us before he went to work. He had an anxious night, waiting for me to ring, to say how nervous I was, or how I didn't know what I was doing with Joseph.

In the morning I was woken by my husband leaning over me yelling "Kylie!!!!" I had had the best night's sleep, better than I had had in eight months. I hadn't slept well in pregnancy, and I missed Joseph so much at night that I couldn't sleep whilst he was in hospital.

That first night, I started to heal. I had my baby back with me, and we would be fine, he would be home, and we would start our life together properly as a family without the stress and inconvenience of hospital.

The Unaskable Question

When your baby is born and admitted into special care, most parents are told the same. To assume that your baby will not be coming home until its due date. Fair enough, makes sense, baby should still be inside the womb, so completely understandable that you won't take your baby home until around then.

Dealing with "outsiders", neighbours, friends even some family can be very hard when your baby is on the unit. Unless you have been on a special care baby unit, it is very difficult to understand what it is like. And most people have never seen a premature baby, and can't comprehend what they look like, how they behave and what treatment they need.

Special care is another world, and another language. Things you take for granted with a term baby, the ability to suck, to digest food, to cope with temperature changes, just have not developed, and all these things take time.

For me the most frustrating questions was "when can you bring your baby home?" And when I would say "around the 7th August, Joseph's due date" people would look horrified, especially in mid May! "How will you cope?". Helpful? The second most annoying questions was "what weight is he to be before he can come home?" If only it was as simple as hitting a magic weight. Joseph was 4lb 6oz when he came home. A baby needs to be well, and weight is only one indicator of wellness.

It's only now that I can appreciate how hard the time in special care was for us as a family. I felt guilty feeling bad about it, afterall it was only 10 weeks. Many people spend a lot longer on units than we did. But this time last year we still had almost a month to go, and Joseph's birthday seems an awful long time ago.

And, the unspoken part of the answer to this question, "when will you bring your baby home?" is that some babies, very sadly and tragically, do not come home with their families. And we remember those who have lost their fight, and are currently fighting.

For Ruth, her husband, and her triplets, Reuben, Henry and Isla 8 weeks old. Isla is currently fighting hard against NEC, you are in our prayers little girl.

Three Amazing Mummies

Today I am introducing you to three remarkable mummies. I met these women through Bliss and they never cease to inspire me with their courage, resourcefulness and love for their children.  I asked them to share their experiences specifically as young mums who have had babies in special care.

I'd like you to meet Abby, who was 19 when her son was born at 27 weeks + 5 days gestation. Abby had swine flu, and despite efforts to keep Luca inside, he was delivered by crash section, whilst Abby was ventilated. Abby then spent 3 weeks on an ECMO machine. Abby had a good experience of her special care unit, which is small, and thankfully Luca was just within the weight parameter to be able to stay in the unit and not be transferred.

Abby missed the first 3 weeks of her precious son's life, and wished the staff had taken photos, hand and footprints, and kept a diary so that Abby could be filled in once she had stabilised. She only has blurry mobile phone pictures taken by her mum to document this time in her son's life, which makes her sad.

Abby found that as a young mum, she wasn't treated any differently to any other mum on the unit. Abby shared the following about her son Luca.

I think Luca is amazing for the fight he's put up. He has been in and out of hospital (at one point re-ventilated) but he never gives up and always has a smile for you. We've got a hard slog ahead, including probably heart surgery, but I know he will approach it with all he's got. My other little boys are amazing because they have had to put up with their mummy being there one day, and away the next. They didn't see me for a whole month, but settled back in straight away. They are brilliant with their little brother and know they have to be gentle  and caring towards him. I think to say I am blessed to have these three boys in my life is an understatement.

Next to share, is Nikki. Marcus was born at 25 weeks + 4 days. No one knows why Nikki's waters broke, and understandably this concerns her greatly. 

Nikki found her experience frightening, on many occasions Nikki was prepared for the fact that Marcus may not survive the night. She found that although the majority of nurses were kind and supportive, some nurses treated her (and other mothers) differently due to their age, and that some doctors and nurses would talk down to her.

Nikki experienced the trauma of her son being transferred, but found the transport teams a Godsend. Marcus had six surgeries at Birmingham Children's Hospital and Nikki cannot speak highly enough of them, they found her places to stay, so that she could be by Marcus' side. 

Nikki feels that there should be more help with expressing, and that nurses should show more compassion. Sadly Nikki found the support from the Health Visitor lacking, she didn't come until Marcus was 6 months old. She hadn't been shown how to bath Marcus. She suffered unnecessarily from post natal depression as the signs were missed, as she did not have adequate support in the community.

Nikki feels very strongly that all mothers should received first aid training for their babies, not just those who have had premature babies.

Nikki says the following about her amazing son Marcus

Marcus is two on July 5th and against all odd has done really well. He has mild general delay and moderate communication delay, but considering he was unable to sit unaided for 30 seconds at 1 year old, I think he did remarkably well to be walking by 17 months of age. The Paediatrician's words were 'that small very sick child who wasn't expected to survive the night, look at him now'. He's my little miracle baby and I would not change him for the world. He is so incredibly cheeky and clever. We were told he would probably have disabilities but so far so good. Only time will tell, and we will continue to be positive.

 

And finally, Sandi, who was 22 when she gave birth to her daughter Alex at 27 weeks + 4 days gestation. No one knows why Alex came so early, which is a cause of major stress to Alex. She finds thinking of the future, it is awful not knowing what happened.

Alex found that she was numb at first, but had faith that everything would be ok. Alex herself was born at 29 weeks. Sandi, like Nikki, felt that some nurses were patronising, but overall she found her experience positive, and that the facilities in her hospital were superb, and she has made friendships with nurses and other mums.

Sandi also felt there was lack of help with expressing. She had never thought about it, and it came as a bit of a shock. On a practical level, she was never shown around the unit and didn't know where the expressing room was until weeks down the line. Sandi also felt there was no information on financial help in general, and did not claim anything for 5 months. She makes the very valid point when you are running to and from hospital for months, you just don't have time to look into benefits. Also, Sandi feels she has not been given any support relating to her daughter's brain haemorrhage, and it's just a case of "wait and see".

About Alex, Sandi says

She is one on Sunday, she made it! I can't ask for much more. Alex is a smiley baby, and has so far passed all her neonatal checkups with flying colours. She has a huge personality. What can I say? She's amazing

Thank you Nikki, Abby and Sandi for sharing your inspirational stories and babies with us, and I look forward to doing a follow up in a years time!