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!

Bringing Home Baby

Following on from yesterday's tips about surviving special care, here are my tips to surviving the first weeks at home. Joseph did not come home on oxygen, and did not have any serious ongoing health issues, he was just very small, 4lb 7oz.

1. You will get suprisingly little notice of your baby's discharge. In our case it was 6 days. Take the time to get everything you need organised, but don't go overboard. A place to sleep, a car seat, nappies, bottles (if needed), steriliser, and some sleepsuits and vests. Also make sure you have enough food in for a week or so, so you don't have the pressure of shopping.
2. Don't tell people baby is coming home unless you want them to visit. You might want to keep it a secret until your settled. Your baby has been in a safe, quiet environment for many weeks, and has been protected from germs and over stimulation. You have also been through a lot of stress and you need the time to get to know your baby.
3. It isn't rude to tell people to go away, and come again some other time. Nor is it rude to not answer the phone
4. Be guided by your unit, but if you are going out, be aware that people will be curious, particularly if your baby is still small. People will touch, so just self-check how happy you are to tell people not to touch. If you don't feel you can do this, keep the rain cover on.
5. Let your GP know your baby is coming home. The unit will send paper work but this can take time.
6. Consider baby wearing. Your little darling will enjoy being kept close to you, it will help you bond, and kangaroo care is proven to help weight gain too. Kangaroo care doesn't have to stop when you leave hospital.
7. Make time for yourself. Premature babies tend to sleep quite a lot (mine certainly did), so sleep, read, embroider, whatever makes you happy. Or just gaze lovingly into the crib!
8. Consider how much you want to tell people. I wish I had done this and I tended to have to go into the whole story every time. You can retain a sense of mystery if you wish!
9. Don't let yourself be pressured by well meaning people. One of Joseph's doctors told me off for not having a dummy for Joseph, so I spent many many evenings trying to get him to take a dummy. He didn't want or need one, and it caused me a lot of stress and tears.
10. Be aware that you may feel quite unsupported. You are used to lots of doctors and nurses around and suddenly you are on your own. Your Health Visitor may not have a lot of time for you. Ring your local sure start centre and find out what is on offer. If you are unable to leave the house, they may be able to come to you. The Bliss forums are a great source of support, and you may find it helpful to look at some "normal" baby forums too.
11. Enjoy your baby. The first weeks are terrifying in many ways, and its a whole new ballgame, but take time to enjoy your little tiny person.

Surviving Special Care

When your baby is born early or poorly, its a frightening time. This is what I wished someone had said to me.

1. Taking care of yourself is your top priority. Your baby is being cared for by a very experienced and well trained group of professionals, but you are the top member of that team. If you do not care for yourself, you will not be able to do your job to the best of your ability.
2. The journey is long, and you do not know at this time how long it will be, so you must come up with some strategies to maintain your energy and focus.
3. Eat. If a neighbour says "let me know if there's anything I can do to help", get them to pack you a lunch, or make a casserole for your evening meal. It's very important to keep your strength up especiallly if your are expressing.A similar point, but fluid intake is vital. Pack water, make sure you have pennies in your bag for tea and coffee. If someone offers you water, say yes.
4. Use your changing bag. If you had already bought a changing bag for your baby, use it now, or go and buy yourself a lovely one, if you have the resources to do so. In that bag pack: - healthy snacks (cereal bars, chocolate - 70% cocoa solids, dried fruit, nuts, juice boxes, wipes, anti bac hand gel, notepad, pens, magazines, books)
5. Take your notepad into the unit. Ask for unfamiliar terms to be written down. Write down any questions that come to your mind
6. Be a mummy. If that means singing songs, reading OK magazine to your baby, taking in treasured childen's books - do it. You are your child's mummy, and your baby will appreciate being sung to, or talked to.
7. Take time out. If its sunny, take your lunch outside. If its raining, sit in the cafeteria. If you have mobile internet pop on facebook and say hi to a friend. Send a text. Read a pointless magazine. You must take time out to refresh and recharge, and keep in touch with life outside the hospital.
8. Schedule time to express. There are many different schools of thought on expressing. Some say to do it as you would feed a baby, not on a schedule, and do it when you feel you need to. This does not work. I am sorry but it doesn't. You don't know your baby in that way yet, you have to schedule it and stick to it. It's too easy to forget. If you forget your in danger of losing your supply. Don't beat yourself up over it, but accept that if you do not express frequently, you cannot maintain supply.
9. Put guilt aside. No mother going through special care does not feel intense guilt that this is all her fault. There is time to go through this later, right now, you need to focus on your baby, and what you need to do to get through this. I can tell you til I am black in the face that this is not your fault, but you will not believe me. Put your guilt in a box and deal with it later.
10. Use your tools, and use anyone at your disposal. I went to the chaplaincy office every day. Just to say hi, the chaplain would make me a cup of tea, and give me a cuddle. I found it really helpful to have someone outside the unit just to cry with, or laugh with or offload to. Spiritual care is not about religion, its about taking care of the whole person, so if you have a chaplaincy team feel free to use them, they are not just about saying prayers for little old ladies in wards. 
11. Keep your belief going. Bond with your baby. If the worse happens, you can never say "I never loved my baby enough". Love, love, love your baby. Take time on the unit to gaze at him/her, get to know your baby intimately, and wonder at the beauty you have created.

Stop Me

I think I have a "Stop Me" sign on my back. In England everytime you go into a town centre, people stop you, to give to charity, to buy something, to sign up for a catologue. Some people manage to sail past these people. Not me. "Stop Me" I'll talk to you, I'll possibly even sign up for something.

When you have a baby, in a sense, you become public property and my "Stop Me" factor has got worse! Add a cute baby, and I become irresistable!!!

One day at a bus stop, a lovely old lady was playing with Joseph. He was grinning (he hadn't been smiling long) and he was enjoying the game. The lady looked at me a bit sadly and said "I have a new great niece but I am so frightened, she was born at 27 weeks and is still in hospital. I think she'll die, no one that small could possibly survive". I nearly fell over, she had no idea!

"How big is she?" I asked. "Oh only 2lb 1oz at birth". I smiled and gently said "Joseph was 1lb 7oz and he was born at 27 weeks". I even found a picture of him. We ended up having a long conversation about the power of being and staying positive, of overcoming adversity, and of faith. It was quite bizarre. But lovely.

I've met so many people like this during our journey, particularly older ladies who either had pregnancy losses, or have been unable to have children. We so take our modern world for granted. Now we have a website and a forum for anything. Bliss has been instrumental in supporting me, and Joseph. I know if I have any concerns or worries I can get answers or at least guidance. And there is SANDS, the amazing support group for stillbirth and neonatal death.

But thirty, forty years ago, there was nothing. And you would not believe the large numbers of older ladies (and men I am sure too) who are walking around with such pain in their hearts, carrying huge burdens of loss that they have been unable to speak about. They've just "kept calm and carried on" for years.

There were days, after Joseph came home, where I thought I would drown under all this sadness and loss. It appeared sometimes everyone had a sad story to share with me. I felt enormous guilt that I had a well baby, and sometimes I was made to feel that I didn't really deserve it. Perhaps it was all in my head, but sometimes people would say "well when I had a premature baby they said there was nothing they could do...."

Sometimes I wish there was more I could do for older people carrying the hurt of loss, who can't access the internet, who have no outlet for their mourning or grief. I always put my arm around little old ladies and say "your baby was real to you, and now your baby is real to me".