A Day in the Life - Spending Time on NICU

Typically, when a baby is born premature, they stay in hospital until around their due date, or at the very least, until they are term (37 weeks gestation). In the UK it is usual practice that the mother is discharged as soon as they are physically well enough, for a caeserean section the guideline is 5-7 days post operative recovery, for a vaginal delivery it can be as little as 1-3 nights.

As a result the mother (and father) will be spending a lot of time visiting their baby, who is living away from them, sometimes many many miles from home.

Hospitals vary widely in how well they cater for mothers and fathers visiting their baby. In our hospital we didn't even have a room where we could express, most of the time I did this at Joseph's cot side. Staff would get us water, but we had no ready access to the water fountain, much less to make a brew.

Fot the first week of Joseph's life, I was an inpatient. In the second week I was home, but still very weak. I went in every day but only once, and could only stay for about an hour, before I had to go home to sleep. After a week or so of doing this I still went once a day, but stayed for 3 - 4 hours, having a lunch break at the hospital, either in the cafeteria or outside under the trees when the weather was fine.

Towards the middle of his journey I was going twice a day, arriving at around 10am and then leaving at 2 and going back around 6 until 8. I did all this on public transport! All the bus drivers wondered what on earth I was doing, and Joseph soon became a minor celebrity.

So what did I do when I was there? I found it was easier to cope if I had structure. I used to do containment holding for the first 5-10 minutes, and I would tell Joseph about my day. Then I would massage his feet, and sing to him for a while. Then I'd express my milk for him just before doing his cares. I'd wash his little face, and in the early days he'd take some of my milk on pippette as a moutwash. I'd change his nappy too, not easy in an incubator!

Then I would read a story, or even OK magazine! Or I would describe photos, telling him all about his home, and his extended family.

Medically, I would try to always be present for ward rounds. I was a pain in the arse. I make no apology for it, but I am quite sure the consultant team and their registrars and house officers referred to me as "that bloody Hodges woman". I would ask questions, I'd take notes, I'd ask for things to be explained, to be written down for me if I felt I needed to refer to it later.

I soon got used to life on the NICU. Monday was Consultant Day. The consultant would personally attend rounds and do a summary of each baby and talk to the parents if they were around. It was also Head Day, the ultrasound technician would come around and examine the babies - checking for brain bleeds and other inconsistencies. Tuesday was eye day. The opthalmologist would come and do examinations for ROP (Retinopathy of Prematurity). Wednesday was bloods day. I used to hate Wednesdays, particularly in the early days, news was never good. Results were available within hours. Thursday was often blood transfusion day for Joseph, following his results, he had anemia for a long time. Friday was another chance to see the Consultant before the weekend.

I used to love and hate weekends. The good part of weekends was that sometimes nurses had more time. Cuddles were longer, there was less hassle. The less good part of weekends was that there was less medical presence, there was a consultant on duty but they weren't there as much, so if things went wrong, it could be quite scary. However, what was lovely was Joseph having us both there, and of course, my husband had the car, so we could come and go a bit more readily, and I didn't have to rely on buses!

It took me a long time to get used to being at home, without the rhythm and routine of hospital! And I think both Joseph and I missed our staff!

Having a Premature Baby - It's Not All Bad!

One of my good friends on Facebook posted a note this week about the positive side of having a premature baby, and I'd like to share some of what was written. I am not being flippant, there are sizeable negatives, and some very sad things about having a small, poorly, early baby, but it isn't all bad!

1. Your baby's clothes last a lot longer! Joseph is wearing shorts that he had last year, but were ankle length, now they're three quarter length, next year they might fit! They're 6-9 months! He's 2.

2. Hospital dramas make much more sense!

3. You get to see the last trimester in action, your baby developing in ways that other mummies don't get to see. When Joseph was born he didn't have nipples, or ears! Just a hole where they should be!

4. Every single milestone is better than winning the lottery.

5. Your little one still passes for under two and gets in for free at soft play etc

6. After experiencing changing a poo-ey nappy in an incubator, diffusing a bomb would be a walk in the park.

7. After a stay in NICU, you could diffuse the bomb next to the sleeping baby and they wouldn't wake up!

8. Health Visitors know better than to mess with a preemie mum!

9. You fit into your pre maternity clothes quicker!

10. You have your baby as a baby for longer.

11. You get a lot of support in learning how to look after your newborn! And every nurse does things differently so you can choose the methods that work for you!

12. You get to sound intelligent with your NICU jargon!

13. Nothing beats the feeling of bringing your premature baby home!

14. Your baby gets 2 birthdays! Like the Queen!

15. Clothes for tiny babies are adorable, and beautiful old ladies knit the loveliest things, and due to infection control, you get to keep them.

16. We get to see the look of wonder on people's faces when we tell them about our baby's birthweight!

17. The best one is that when you have a premature baby there is a community of loving, caring parents, who have walked in your shoes, who have felt what your feeling, and are ready to give a hug, a comforting word, or non-annoying advice.

This post is dedicated to Gemma and Charlie.

Birthday!

Today Joseph turned two. It's been a busy day! Joseph was up in the night, which is very rare, he woke up having a nightmare, and came in and had huge cuddles, and fell asleep in my arms, which he never does. Maybe he realised today is a momentous day!

I was up at 7am, and obligingly Joseph decided to sleep til 9, bless him. Joseph's paternal grandparents are staying with us, and we were all anxious for him to get up and open his presents.

I had set myself the monumental task of making Bienenstich Joseph's absolute favourite cake. Now if you read this recipe and think it might be a nice idea to give it a try, my advice to you is not to bother. Good lord, I am a pretty experienced baker, but it was hard work! Never again.......however, it did taste fabulous, and importantly, authentic!

This afternoon I did a big Sunday lunch with the grandparents, and Joseph's great aunt Maevis. Joseph has had loads of gifts, the highlights being lots of Playmobil 1-2-3 and an In The Night Garden Easel. We have had some masterpieces in chalk already.

And now, all is quiet. Aunty Maevis and Grandma have gone for a walk, the men are in the pub watching the Manchester United, and Joseph, full of cake, is sound asleep.

And me, I can't stop thinking about how amazing, and how ordinary life is. Joseph is walking, he's talking, he's eating with cutlery. He has caught up to his peers more or less.

I have been looking at pictures, and listening to "Wires" and so glad that it's finally true. "Looking at you now, you would never know".

We are blessed, and happy, and can't wait to see what the coming year brings.

2 Years Ago Today

I was sitting in the Ante Natal ward, I can't even remember if I was in my pyjamas or clothes, with all the curtains drawn around the bed, receiving the devastating news from my consultant, that there was no way I would be carrying my pregnancy any further. I was to receive steroids, and my baby would be delivered at 9am the following day.

I don't think I ever knew true fear until that moment. I was terrified. Of dying. Of my baby dying. My baby being disabled. The long road ahead. And I cried and cried. I was surrounded by young girls in beds for social reasons, becoming more and more self concious of my sobbing.

The 17 year old girl opposite called me over, and she held me whilst I sobbed. Her mother arrived, and she held me too. They told me everything would be alright, and they would get me through. A midwife came in and called me to the phone. My husband. "Do you need me to come in from work?" I sobbed "yes please".

It was 2 years ago. Today. Things are so bright, my son is walking and talking. He's not disabled, you wouldn't even know he was born at anything other than term. I am well. You wouldn't know that I was close to death that day.

It's the past. It's important. To remember is natural and healthy, but it isn't our future.

The futures is bright.

Time Goes By

When do children learn to tell the time. I argue it must be in the womb! This is a whimsical little post really, I know Joseph can't really tell the time.

We have a little ritual when my husband is going to be off work the next day. We put Joseph to bed and my husband books a wake up time. He says "sleep in until 8 tomorrow". And you know what? It actually works. I have no idea how. This morning is a good example. We normally get up around 6.30 on a weekday morning, but this week my husband has today, Friday, off work. So last night he asked Joseph to wake around 8. Joseph awoke at 8.45!

Joseph has had this spooky ability from when he was tiny. I remember the first Monday he was born. It was his fourth day on planet earth, he was in the first incubator in NICU and I was still an inpatient. I had gone to see him before breakfast, and said before I left, I told him I will come back at 10. I went up for my breakfast, then I went to antenatal to cancel my GTT test and my growth scan scheduled for 28 weeks. I got told off, and lectured about how important it was for me to still have these! It took a while for them to believe me that I had delivered as I was so cheerful.  I saw the sonographer who had done the emergency scan, and showed her my pictures whilst we had a natter. I got to the the door of the unit at 10.

However, in front of me was an old lady trying to open the door (our NICU, like most, has very high security). She looked at me and said "I'm not at Physiotherapy am I?" She was fairly confused so I walked her to her appointment and walked back. It took all of 5 minutes. I got back to the unit, rang the bell and got let in. As I walked down the corridor all hell was breaking loose in NICU, two alarms were sounding, it was Joseph. I ran to the door before the nurses could get to him, and said "oi I am 5 minutes late Joseph", opened the incubator doors and put my hands on him in a containment hold, and it stopped. He was having a bradycardia (where the heart rate slows, and oxygen saturation drops).

The two nurses and the doctor looked in utter disbelief, then giggled "wrapped around his tiny finger already", one sagely said! My reply was "I'd like to know who put a watch in his incubator" . After that day I alway made sure I appended any time with "ish"!

And I know its all coincidence, but it makes a great tale. And he's still like a ticking clock now!

Nicu Nurse - What makes a good one?

Yesterday I read this interesting article written by Jodi, a NICU (neonatal intensive care) nurse. It got me thinking about what makes a good NICU nurse, what qualities should they have and practices should they follow. Obviously this is very subjective, and this is just my opinion. I have a group of four friends who went through NICU together with me, and we all differed on which ones we liked the best!

However, it was pretty universal that we all loved one nurse, who I shall call Matilda. (M)  She had a way of relating to parents, she was down to earth and practical and full of good, sound suggestions. She never tried to pretend she knew how it felt to have a tiny baby, but she always seemed to understand exactly what we were going through. I remember her saying to me in about week 3 that a time would come where we really resented the staff and would feel bitter about their involvement, and she was absolutely right. By week 7 I was so, pardon the French, pissed off with the whole thing and just wanted my baby to be mine. I was sick of sharing him. The fact that she recognsied this and pre empted it really helped me understand that what I was feeling was normal. I have tears in my eyes reading that back. I was so grateful my baby was alive, and so grateful that we had such brilliant, experienced nurses, but sometimes I felt so angry, but mainly at myself, that I had failed to do my job, incubate my baby safely, and other people now had to it for me.

The picture above is of Joseph in HDU, about week 5. M had got him all settled and comfy, she had a special way with him, of getting him in just the right position, and making him feel and look so snuggly! I'll never forget her kindness and her warmth.

So here is what I think makes a good NICU nurse.

Calmness and grace - NICUs can be mad, understaffed, busy places. A good nurse, to me, treats every baby as an individual, and like a swan on a rough lake, you can't tell what's happening underneath. When Joseph was very poorly on day 5 some of the doctors were extremely concerned, but none of the nurses let on at all that they were worried, they just calmly got on with it, and that helped me stay calm too.

Communication skills - a lot of what happens in NICU is very technical, and very complex. I remember one of my favourite nurses having to explain to me that Joseph needed insulin, and being very careful to make sure I understood it was just a "preemie" problem and didn't necessarily mean anything long term. I also remember careful explanations of different drugs and potential side effects. It's a hard time, and its made easier for parents if they can explain things carefully. An example of bad communication is when Joseph needed tests for retinopathy of prematurity. A leaflet was just left on the side in his room with a post it saying "mum read this". I was terrified that he might have complications and needed it explained carefully.

Empathy, but don't over identify - No one knows what its like to be the mother of a premature baby until they have walked that path. And to be fair, everyone's experience is individual, what I feel may not be what you feel. I think it's important that a good nurse has empathy, and puts themselves in your shoes, like M did in my example above. She warned me of how I might feel later in my journey, and when it happened, took me aside and helped me through it. One of the night nurses had had a baby in that unit some years before, and I found it difficult to talk to her, because she always looked so worried about Joseph. She was almost too caring, too close, and I found it very difficult at the time, as I had so many emotions I had no idea what to do with them or what to say.

Baby skills - sometimes, and its inevitable, your baby seems like a patient, and nothing else. They have wires and lines and tubes and machines. There are medicines to work out to the 0.01 of a mil. Everything has to be measured, even wee and poo. Sometimes I'd walk into the unit, and not even be able to see Joseph for all the equipment in the way. A good nurse has good baby skills. The picture above to me illustrates that. The baby is spoken to and treated as a baby first and a patient second, its a baby focussed, family inclusive approach that I think is sometimes missing.  And a good nurse empowers the parents to focus on the baby, not on the machinery and what is happening medically. A good nurse helps you to understand what you can do to help your baby, encourage you to sing, or to read, to do "cares" - change your babies nappy, clean their face, move their probe site.

A good nurse makes you feel confident in your skills as a parent, that you are an integral part of the team, and not just a spare part. A good nurse keeps you informed, and makes sure you are as involved as you can be in your baby's life on the NICU. And a good nurse reminds you that there will come a day when this is over. One of our regular nurses later on in our journey came to me one day and said "have you got somewhere for Joseph to sleep when he comes home?" I cocked my head to one side and said "Um no, we haven't got anything yet", she looked at me with a fake stern look and said "this weekend, go shopping, get a car seat and somewhere for him to sleep" then walked off. Just over a week later and Joseph was home!

Little Victories

It's funny the things that excite me now I am a mummy! The picture here is of a rather cute cutlery set. My sister in law, Joseph's Auntie Tasha bought this for him when he was little. When he received it he hadn't even started first tastes of weaning.

I have blogged about weaning before, but basically I decided to do a combination of baby led and traditional weaning, that I nicknamed "collaborative weaning". Joseph's manual dexterity and hand eye co ordination at 6 months was just not sufficient for baby led weaning. So I would make puree, say of avocado, serving a slice of avocado next to it, and we'd explore together, and he'd even eat some of it! It was messy, but fun!

Unfortunately one of the limitations of this approach was that Joseph got used to his fingers early on, which is great, and he's been independently eating for about a year. But, he eats like a savage! A tidy savage though. Watching him eat corn on the cob or a chicken drumstick is a delight. And he'll eat "finger vegetables" like peas and roasted vegetables, but Joseph decided a while ago he wasn't going to eat anything mushy or even mashed, as it got his hands sticky and dirty. He wouldn't allow cutlery in his mouth, unless it had yoghurt on it!

As chief cook, this has proven to be tricky. Things I used to rely on like fish pie, cottage pie, even casseroles and stews have been restricted. I still cook those things occasionally but make sure I have plenty of Joseph-friendly side dishes.

Last night, however, was different. I'd cooked roast beef on Sunday, and decided to use the left overs for cottage pie. I put Joseph's cutlery on the table, and waited. He did it. He ate all his mushy dinner with his fork and spoon!

Now it seems so silly how excited I am by this, but I feel like I have a very clever, but also, very ordinary toddler! He can eat his food with cutlery, he can walk, he can talk, and he's just normal!

And he's almost caught up to his peers. I am contemplating sending Joseph to pre school for 2 mornings a week in September and was worried he'd be like a baby in his class, but he's doing just great!