Special Delivery

For any parent, whether your baby was born at 24 weeks or at 42 weeks, weighed 1lb 7oz or 10lb 7oz, the moment you leave the hospital, put the baby in the car, and bring the baby home is the most amazing experience ever.

I once attended an information day for a nursing degree and the teacher asked “what is the most important day of a patient’s time in hospital?” Everyone had different answers, the day they get an answer, the day of their surgery, but no, it’s the day of discharge, and no day crystallises this more than the day a premature baby or any baby, goes home.

It was a Tuesday, the 21^st July when Joseph finally got the ok to go home. The morning was spent with my favourite doctor and the consultant. They asked me lots of questions, had I done my resuscitation training? Had we got everything ready at home? Did I understand Joseph’s medication schedule? They did check after check, and Dr D made sure I understood how to diagnose a hernia, and explained at great lengths, pointing to his own gentleman bits, about testicles. (Fortunately he did keep his clothes on!)

Tuesday on our unit was “ophthalmology day”, the eye doctor normally came in the morning, but of course, on our day of discharge, he had had a few emergencies and was running late. He finally arrived at 2.30 pm and hurriedly rushing through the other patients to get to us. Finally Joseph was given the all clear. We went to the main special care area and said our goodbyes. We had cuddles and tears and then that was it. A nurse carried Joseph in his car seat, and we put him in the car.

I sat in the back, with tears in my eyes. I think our 15 minute journey took closer to 45 minutes. We gently lifted the car seat in the house, and scooped our tiny baby into our arms. My husband took him and showed him every room. We put him down on a cushion and just watched him. It was amazing. He was ours. We were home.

Here are some other people’s thoughts.

“The journey home was scary, I was so paranoid the oxygen canister would start leaking!” - Jess

“Feeling terrified my dad would crash the car, and looking round at the world outside thinking how much life had changed.” - Justine

“We drove home SOOO slowly - didn't want to go round corners or over speed bumps too fast... We then went over to some neighbours in the evening. Skye was REALLY unsettled all night and for much of the following week, feeding every 45 minu...tes or so and screaming in between unless cuddled. It was also one of the hottest weeks of the year and I was utterly paranoid that I was going to overheat her. So much so that we went out in the car once she'd been home for about a week and put the aircon on full blast. She screamed and screamed and it was a while before we realised she was cold! We put a blanket over her and turned the aircon down and she settled. Bless her!” - Ruth

“Just grinning like a Cheshire cat the whole way home :) agree with Justine’s comment, I definitely saw the world in a different way once our precious cargo was on board :) on coming home: James went out to get my dad from the station a few hours after we got home. It was the first time we had truly been alone, just us. What a feeling!! Me and my boy, I felt on top of the world” - Kirsty

“The 3 hour drive home from the hospital took about 5 hours that day and we needed to stop and feed her, stopped in a car park and I’m sure the woman in the next car though i was feeding a doll she was still so tiny...got some very odd looks!...
As soon as we stepped in the flat I felt a rush of relief and also had to pinch myself as we'd waited so long for that day. It was a few days before we had visitors we just wanted to settle in as a family. it was an amazing feeling.” - Sara

“Remember with Emma feeling so excited and then the first night we had her at the emergency doctors because she was making noises that she didn't do in the nursery. We were told to go home and get some sleep!! Cara's homecoming was different but hectic. We ...had an idea she'd be out soon but thought the weekend but on Monday morning during doctor rounds the nurse popped her head out the door and said you're going home today. Panic as nothing was ready so rushed home mad 2 hours and back to get her. Second time round it was much more relaxed and exciting. Won't be doing it again though” - Tracey

Home Alone

Coming home without my baby is the hardest thing I have ever done. I was “lucky” in that I was poorly so I had to stay in hospital for seven nights when Joseph was born. My room was upstairs on the antenatal ward, and his room was downstairs, about a 5 minute walk (or 10 minutes post c-section!). I loved it because I could just pop in. If I woke at 3am to express, I could tiptoe down, drop off my milk and pop in for a natter. I loved those late night chats, no doctors doing rounds, nurses keeping to themselves, no phone calls, just the gentle hum of equipment, and my baby.

I knew, from the moment I was told I was having my baby at 27 weeks, that Joseph would be in until his due date, at the very least. I knew I would only be kept in hospital until I was clinically well. The NHS care guideline for c-section is generally four nights, but because of my complications, I was allowed seven nights. Joseph was in for 76 nights. That’s a lot of nights being separated from my baby, and for many other mums and dads, it is a lot longer.

Hospitals usually cannot accommodate parents on the unit. They do have bedrooms but these are generally reserved for “rooming n” spending a couple of nights with your baby prior to discharge. Some hospitals have accommodation of your baby is far from home, but even that isn’t guaranteed. 

Here are my tips for coming home without your baby.

•  Ask if you can leave a muslin with your baby (clean and prewashed in non biological washing liquid/powder) and then swap it with one you have slept with. It will increase your feelings of being connected with your baby and may help with expressing milk.

• Leave a photograph of yourselves (you and the daddy if appropriate) most hospitals will put these inside the incubator.

• Decide how much time you feel you are able to spend at the hospital, and review this every few days. When I first came home, I could only manage an hour each day. I would go in the morning, my husband would go in the evening. Later I started going twice, and then staying most of the day.

• Take photographs every day if you can. It’s amazing how quickly your baby will start looking different, and more baby like!

• Make time for yourself. Your baby should still be inside, you have had a lot of upheaval, and you will probably be stressed. Make time to read (something non baby related), get your hair done, or do some shopping. It’s ok not to be at the hospital all the time, your baby needs to sleep, to grow, and needs a happy, relaxed mummy.

• If you have other children, it’s very difficult to balance the whole family. Try not to feel guilt if you can’t go in every day, explain to the staff about your situation at home.

• Make time to express milk, you really do need to make sure you do it three hourly and once through the night.

• Find what works for you. I couldn’t look at pictures of Joseph, it made me sad, and I couldn’t produce milk, its meant to help! Scent helped me better, exchange of muslins, or taking his hat and later vests that he had worn.

• Ring the unit whenever you feel you need to. Sometimes I would wake in tears, and it would help me to ring and get an update. Every time I rang everything was fine, but it made me feel better!

• Make time to spend with your husband, and divide up tasks between you. Make time to talk about the future and buy things for your new baby!

• Eat. I tell all my new premature mummy friends this, so much so that it’s become a joke, but you really do need to eat. If you are expressing you need to eat at least 2000 calories a day, even more at times, to ensure your milk is best quality and calorie rich. Now is not the time to diet.

• I can’t emphasise this enough but take all offers of help. If anyone says “is there anything I can do?” give them a job. Washing, ironing, cooking you a meal, driving you to hospital...anything!

• If you are really struggling, make sure you tell the staff at the hospital, speak to your favourite nurse or the unit manager, there may be solution, perhaps they can accommodate you for a couple of days. There is nothing harder than being physically separated from your baby and the staff will understand that.

It sounds callous, but your baby has got the best baby sitters on the planet, don’t feel guilty for using this time to get ready, physically and emotionally, for your baby to come home with you. It will be the sweetest day of your life, and worth the wait.

Hold Me Now

When you think of a newborn, what comes to mind? I’m talking about a brand newborn, straight out of the womb. I think of a bundle, a baby quickly wrapped and brought to mum, of cuddles, that little kiss on the top of the head. I think of a baby being cradled by mum and dad. To be able to hold your baby is a basic human right.

When a baby is born too soon, they cannot be held, usually. In some circumstances they can be bundled up for a quick look and a kiss but in lots of cases, they can’t see their mum and dad, and have to be whisked away to be worked on and to be stabilised. 

In some cases the mother is too sick to be moved, and cannot see their baby. My baby was born on a Friday. I was told to expect to see him on the Monday. I died inside. I tried to be brave, as I knew I was sick and so was he, and was grateful we were both still here, but not to be able to see him for this length of time seemed impossible to me. Like any mum, I sobbed as soon as the doctor had left. I did see my baby, when he was 8 hours old.

Handling Joseph was impossible. He had to stay inside his incubator. To help others to understand why we can’t hold our babies I wanted to outline the reasons, although they seem obvious, a lot of people outside the world of premature babies do not understand why this is the case.

Vulnerability – The premature baby’s skin is not developed, as you probably know, skin is multiple layers to prevent infection. Imagine the worst sunburn you’ve ever had, the skin peels off in layers. A premature baby has a very thin skin mantle, therefore nothing much to protect it from the outside world and infection. An infection that lays dormant on your skin or on your clothing could kill a premature baby.

Breathing – Whilst being on breathing support does not preclude being held, it is very difficult to maintain a baby on a ventilator outside the incubator. It is not impossible, and babies on long term ventilator support may sometimes be held. CPAP is easier, but an unstable baby with breathing issues may be safer and more comfortable within the confines of the incubator. (in the picture above, Joseph is wearing CPAP - I call it his spaceman outfit!)

Temperature Control – Coupled with the breathing issues and the skin mantle, premature babies are lacking fat stores, coupled with immature body systems, so controlling temperature is very difficult. If a premature baby’s temperature is not stable, it can be life threatening. Once the baby is stronger kangaroo care will be encouraged, where the baby is placed on the mother or father’s chest, skin on skin, which helps keep them warm and snug. Different hospitals will vary on when kangaroo care is considered appropriate.

Overstimulation – Premature babies are very prone to becoming over-stimulated, and as a result they can become stressed, keeping them in their incubators prevents this, however calm, gentle kangaroo care can help too.

For the above reasons, handling needs to be kept to a minimum, however even inside a plastic box, there is a lot you can do to maintain contact with your baby.

Baby massage is very powerful, even if you can only manage a foot or a hand, just gentle strokes, and once the baby is bigger, the staff may be happy for you to do more techniques. You must always be guided by the staff and doctors, in some babies massage may not be a good idea, particularly if they have had surgery.

Comfort holding is a very good technique and the nurses should be able to demonstrate this, but basically you curl one hand around the head and the other around the feet. Joseph’s feet were under a lot of stress with heel pricks and with monitors, so I used to cup his bottom and head, when he was on his side or belly.

Even once you are able to hold or touch your baby on a regular basis, there may be times when this is not possible. Your baby may be have trouble with bradycardias (slow heartbeat) or desaturation (maintaining good oxygen levels in the blood). Your baby might be poorly with infection, or have required surgery. It is difficult, especially if you have had the freedom to get your baby in and out of the incubator yourself. 

Sometimes it is difficult to understand why decisions have been made, and you should be involved in the decisions regarding your baby’s care, but it is not always possible.

Remember that one day, this time will be in the past, and you can pick up and snuggle your baby whenever you desire. 

Now is not forever.

Managing Your Baby's Hospital Stay - Dealing with Doctors

For many of us, childbirth is the first real dealing we have with hospitals. If our baby is admitted into special care, this maybe the very first time we have had to deal with doctors, nurses and allied medical staff. I wanted to share some of my experience and tips for dealing with doctors in particular.

Prior to having Joseph I had worked as a specialist carer, often supporting people with complex medical conditions in their dealings with doctors, and attending during hospital admissions. Later I worked for a medical insurer, part of my role was liaising with hospitals and consultants. I hated challenging consultants and asking for rationale for decisions. I felt out of my depth, but I got used to it. This experience really helped me during Joseph’s admission.

• There are several doctors you will encounter during your child’s admission, at various levels of experience. Keep a notepad and write down their names and titles, and ask early on who the consultant is in charge of your child’s care. This link will explain the names of the types of doctors and their level  If you see new faces during your stay, ask who they are and what they do. It’s your right to know who is involved in your child’s care. 

•   Once you have found out who the consultant in charge is, use them. If you have questions that are more long term in nature, this is the person to ask. The consultant should offer you an appointment to discuss your child’s care, and offer you their secretary’s number. They are your first port of call for medical questions, and although they are very busy people, they are eager to help you learn more about what is happening, as ultimately, you will be the child’s principal carer. 

• No question is stupid. Medicine is about the asking of questions and finding the answers. Ask questions. Sometimes the most basic of questions will help a doctor crystallise their thinking, and direct them. You are the most important member of your child’s team and have every right to feel informed.

• Keep that notepad handy, write down your questions and the answers, ask for complex terms to be explained, or spelt out. No one expects you to know everything, and particularly in times of stress, it is very hard to retain everything, especially if you need to explain it to someone else later.

• It is ok to challenge. In medicine there is often more than one way of doing something, and more than one answer. If you feel something isn’t right, or isn’t what you have been told, its ok to query it, or ask for another opinion. It is also ok to ask how their opinion is based. Is it from a test result? Is it from experience? For example, I was told Joseph would never be able to eat and would be tube fed. I knew that the hospital we were in had limited facilities for tests, and asked how the doctor arrived at this. She said it was her experience of babies like Joseph. I knew at that point it wasn’t based on clinical evidence, but opinion, which is fine, but I knew then that it may not happen and it was ok to keep positive. As it turns out, Joseph did not require a long term tube. 

• It’s ok to ask for things to be explained again, or a different way. A lot of the care of babies in hospital is incredibly technical, and a lot of the time things have to be done incredibly quickly. In the care of babies, there is no lee way. With an adult sometimes you can afford to wait 2 days for blood test to come back. In babies things often have to be done immediately, like antibiotics or lumbar punctures, as blood cultures take days to come back. This should all be explained to you, but sometimes, things are so fast paced, that you can feel lost and confused. Staff should be happy to explain things again when things have calmed down.

• Learn how your unit works. In ours a lot of the everyday decisions were made by the nursing staff, not by doctors. How often feeds were given and how, whether a baby was well enough for handling, which babies were in which sections of the unit were made by the nursing staff not doctors. It’s handy if you can work this out at the beginning as it will help you direct your questions to the right person.

•  Don’t use Google if you can help it. It’s ok for general definitions, but anything else, its not the best tool. Medical information can be interpreted different ways, some people write articles (like me!) from their own personal point of view, and the internet is full of outdated and just downright inaccurate information. If you can, ask your medical team. If you can’t helplines run by organisations such as Bliss or Tommy’s can help you.

•  If communication is breaking down between you and the hospital, don’t be afraid to use the complaints system. Every hospital in England has a PALS office (Patient Advisory and Liaison Service) PALS can do all sorts of things, from gentle chats with doctors, to full on complaints procedures. Sometimes it helps to run something past PALS to just see if you have grounds for feeling upset or left out. PALS can help things get back on track again.

• This may sound strange, but make friends with your chaplaincy service, even if you are not remotely religious. Often the chaplains have time to talk, often have medical knowledge and very often have close ties with the NICU. I found the chaplains were invaluable for helping me with questions, and finding someone to ask, they really helped me make sense of what was going on. Chaplains do a lot more than just pray for people who are dying, and offering communion to old people. The chaplains would also pop in and visit Joseph, and leave a little calling card so I knew that had been.

 

Useful numbers and links:

Bliss Family Support Helpline: 0500 618140

Tommy’s Midwives:  0800 0147 800

Outline of NHS complaints process

PALS offices throughout England

Night Terrors

When Joseph was about 9 months old, he started suffering night terrors. Most of the literature suggests night terrors don’t start until much later, however, Joseph has never been one for reading the literature.

Night terrors are part of a broader sleep condition called “confusional arousal”. Somewhere between going from deep sleep to lighter rapid eye movement sleep, something becomes disturbed, and the baby screams and cries, often sitting bolt upright, with their eyes wide open, or sometimes still closed.

It’s distressing. In our case, Joseph is a laid back, happy baby, and never has cried much, only for obvious things, and to see him so upset and inconsolable was so distressing. And I blamed myself. I started looking for answers, reading, and asking friends for their experiences.

I could not locate any studies about premature babies and night terrors, but from my casual discussions with mothers of premature babies, I have found that it is not uncommon for premature babies to suffer from night terrors, often into the later toddler years. 

Joseph’s night time activity wasn’t always screaming or crying. Sometimes he would cough and cough, I would go into him and hold him, and he would start to laugh, but he would be asleep. On one occasion I put him on the floor to straighten his bed, and he crawled, at this stage he didn’t do this when awake. He got to sitting, and he started playing with a toy that when awake, he couldn’t work. It was spooky, and this went on in varying degrees for weeks. I was baffled as prior to this he’d been sleeping through.

I read widely on this topic and these are my conclusions. I focus on night time sleep but the same rules go for naps as well. 

• Do not wake the child. Don’t run in to the room. Stay calm, stay quiet, talk in soothing tones. You can pick the child up, but its better not to and  to sit in the room and wait for it to finish.  The child is actually asleep, so is still getting refreshing sleep, and if you wake the child, he/she will become sleep deprived and may make the night terrors worse.

•  Observe what happens in these instances. If they keep continuing, you may find it helpful to keep a diary of what happened during the night time routine, what time the terror or arousal occurred, how long it went for etc.

• Eliminate obvious causes first. Sometimes things like pain (teething), or a cold (post nasal drip – the snot running into the back of the throat) can cause these arousals, so its worth trying paracetamol or nurofen before bed, or saline nasal spray.

• If after trying this approach for a few weeks it doesn’t work and the night terror’s continue you can do the following.  Looking at the diary of when these incidents occur, wake the child up half an hour before the usual time of an arousal. Wake the child fully, offer a drink, and then resettle. This can break the cycle, but you need to be consistent and do this for 10 days running.

• If after trying these methods, you should consult your doctor. Sometimes night terrors can be caused by sleep apnoea or not getting enough oxygen during the night.  If your child has had problems with breathing in the past, or is on oxygen, obviously seek medical advice before trying the above this period of time. It could be as simple as enlarged adenoids.

• Night terrors can be genetic. My grandmother was a sufferer, and so am I.

• The most important thing to remember is, this is not distressing for the child. Its distressing for the family, for the person listening to it and I think, especially the mother, because its our job to keep them safe from harm, but the child is asleep and quite content, even though they sound like they are being chased by the Gruffalo.

 
  For more reading:

http://www.bubhub.com.au/info/articles/toddler/how_to_stop_night_terrors.shtml

http://www.drhull.com/EncyMaster/C/confusional_arousals.html

Being a Mum to Premature Baby

As I've travelled this journey as mum to premature baby, I've found it hard, at times to fit in, with baby groups, with parenting websites, just doing normal every day things, sometimes I find its hard to explain myself, and my point of view. To the outsider I'm just another mummy, with my son in a pushchair, doing mum things, but often life is different for the mum of a premature baby. Here are some of my thoughts.

1. We've seen and heard things other mums haven't. We have seen our babies go through horrible procedures, even simple things such as having a naso gastric tube, whilst a routine procedure from a neonatologist point of view, is a big thing for a mum to see and deal with. Having lines fitted, having numerous blood tests, each procedure tugs at our heart strings.

2. Often, we have been given news, bad news. And that bad news leaves an imprint on our hearts, even once our child is no longer at risk. As I've blogged about before, the words "we are not sure that your son is going to live" left me broken, and I've never quite recovered, and in fact, I feel a catch in my throat, and the tears sting when I see him standing up playing with his cars on the sofa. The little person who is such an enormous part of my life, with such a huge personality, nearly wasn't here, and I'm not sure how you recover from that.

3. We have instructions. On discharge we are told to be careful about mixing, not to allow our children to be passed around, to be very careful about colds and flu. We wash and sanitise our hands, and we require others to do the same. Are we paranoid? No, we are careful, and we require the same care in others. If we pull the raincover over the pram in glaring sunlight, or wear our babies in a sling close to us, it may be because that is the only way we can stop people touching our babies without following the rules. If your told by a parent to stop and wash your hands, don't take it personally, just do it.

4. We have our own sort of humour. Survivors of any sort of trauma or difficult situation sometimes have "trench humour", we're not trying to minimise what happened, its our way of coping, of trying to lighten what we have been through. Just because I joke about being able to eat brie in at 29 weeks pregnant does not mean I wanted a pregnancy in two trimesters, and I am not being frivolous. Sometimes, it helps to laugh.

5. We missed physical contact with our babies for weeks and months. We had to ask permission to touch and hold our babies. Yes we may hug a little tighter, we may be reluctant to give our babies to others, but be gentle with us, we have been through a lot. Unless you have ever had to ask permission to hold your baby, don't judge us.

6. We know a language that we share with doctors and nurses, and perhaps writers of medical programs. We pop words into sentences you may not understand. We're not doing it to be clever, or to alienate you, that is the language we know.

7. Every little achievement is a massive deal. Today I took pictures on the webcam of Joseph using a beaker. When he was 2 weeks old I was told he would never eat or drink, and would be tube fed for life. He used a beaker, no lid, no teat, just a normal beaker! And he can dip his turkey sandwich into his milk if he wants (I don't recommend it). To me, this is incredible.

Sometimes the world of term babies seems so alien to me, that it's easier just to associate with people who have walked in my shoes, and are now walking in my shoes. How I long to know what its like to have a baby that comes home with you, that doesn't have lines going in and wires coming out. I wouldn't change what I've been through, and the mummy I am now, and I sure as hell would not change my baby, but sometimes, I just wish I could have stepped in someone else's shoes.

Dear Younger Self

Dear 16 year old Kylie,

Life isn't particularly easy at the moment, and I know you feel like you are being left behind. You haven't got a boyfriend yet, they really are over-rated, a lot of work at this age, for not much result. In your future, although you won't have them queuing around the block, there will be plenty of fish, some that need chucking back quite swiftly not even with a Rex Hunt kiss, but definitely a keeper. Keeping with the kissing, but moving from the fish, you may need to kiss a frog, or six, along the way. 

I know you are desperate at the moment not to be a teenager, but really, those years go far too fast, and before you know it, you are landed with a job, rent or a mortage to pay, and a load of responsibility, treasure the last of your teen years. Don't take life too seriously, enjoy it, be a kid, make mistakes. If you wait until your twenties and thirties to live a little and make those mistakes, your in danger of being left behind.

Don't worry so much about the world, it has a enough trouble of it's own. Live your best life, and follow your dreams, but worrying doesn't solve a thing. Its constraining, and it will prevent you from really living and experiencing everything out there.

5 years on

Dear 21 year old Kylie,

Don't do this. Don't marry him. I know your a Christian, and he's a Christian, and it all seems a good idea. I know you think you love him, but he doesn't love you. He needs you desperately, but he doesn't love you. It will end in more than tears, it will end in sorrow. He will bring you to a dark place you do not need to go to. You are young, there is a whole world out there waiting for you, do not live in darkness, do not live in his shadow, come out, into the light, into freedom.

Dear 30 year old Kylie

You have to do this now. You should have done it years ago. Get out of Tasmania, learn what life is all about away from your shadows of the past. You married him, but you divorced him, and now is time to really live, and to love, and to shine. Yes, it will be scary. Yes, at times England will seem so foreign, despite sharing a language at times it will seem so different you will wonder why you didn't just move somewhere totally foreign. But you will find love here, and you will finally have what you've longed for, but it may not be as you expected. But you will be fine.

Dear future self,

Well its been a crazy path, but now is the time to think more strategically, forget about past mistakes and really do what your heart wants you to do, find your career, its not too late, and follow you heart. Being a mum may be enough for right now, but in the future, you may need more. Take the time to plan, and to consider, to make decisions carefully, and to use your resources wisely.

That is all

My present self