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4 Months Early

Navigating the NICU

“4 Months Early” – an introduction to the blog

On 5th March 2016 our lives changed forever when, nearly four months early, I went into labour spontaneously and our second son was born. What followed was the most challenging few months that we have ever experienced. We were, very suddenly, launched into a world that we’d previously known little about. Some of the most precious and beautiful life moments that we’ll always treasure occurred in the midst of what can only be described as a trauma.

“4 Months Early” is a blog that will document different aspects of life in the NICU and the reality of having a premature baby, from our experience. Throughout the blog I’ll use quotes from our diary entries – we journalled every day of the hospital stay. These appear in italics and are dated. I’ve changed the names of nurses, doctors and consultants. Initially I’m going to publish a week of daily posts, in the run up to World Prematurity Day on 17th November.

As the blog won’t have our whole story chronologically, I thought it might be helpful to include here a brief summary of our story to set the context:

Alec was born in Peterborough Hospital at 23 weeks’ (+5) gestation on 5th March 2016, weighing 1lb9oz (714g), eyes still fused shut. Within hours he was transferred to Addenbrookes, where he spent the majority of his 5 month hospital stay. By the time he came home, he’d spent nearly 6 weeks ventilated and months on breathing support, he’d had a severe brain bleed, had endured 2 major abdominal operations and another routine op, he’d had laser eye surgery on both retinas, had required 27 blood transfusions, had fought infections and he’d shown us all what a strong boy he is. On 9th August 2016 Alec came home to live with his mummy, daddy and big brother. He doesn’t require any oxygen, is breastfed on demand, and is starting to enjoy some solids, and is a smiley happy boy.

 

Blog titles to look out for over the coming week:

“On the cusp”

“And do you have a medical background?”

NICU Milestones

Express yourself!

BROTHERS (Part 1)

Guest post from Sam

HOME!

Featured post

A very different Mother’s Day

Mother’s Day 2012: painful, following an early miscarriage the previous December. Mother’s Day 2013: cautiously excited, as we made our way through the first trimester of our boy. Mother’s Day 2014: a day with Sam and Evan, blue painty foot and handprints, photo memories. Mother’s Day 2015: starting to hope for a brother or sister for our eldest. Mother’s Day 2016: our life turned upside down the day before.

On 5th March 2016 our little boy Alec was born at 23+5 weeks’ gestation, weighing 1lb9oz. Whisked away from us following his lengthy resuscitation, we had followed on after the ambulance who had transferred him to Addenbrooke’s. And now he was there, fighting for his life.

During the early hours of March 6th, Mother’s Day, I was wheeled around from the ward to see my tiny tiny boy. I chatted with the nurse Felicity (who became a very favourite and special nurse) and she brought out a little bag and handed it to me. Inside were a few items selected especially for Mother’s Day – a notebook, hand cream, pen etc, and, most special of all, a small ceramic heart with some tiny footprints on it.img-20160306-wa0000

“Are these Alec’s footprints?” I asked hesitantly, barely able to believe that they could be. Felicity replied that they were. Overwhelmed by the love and care of the NICU staff, to produce this special keepsake for all the mums that day, all I could think was how amazing it was that I’d had the opportunity to have the footprints at only a day old, not something I’d done with my older boy Evan. I was also acutely aware that this ceramic heart was going to be something I’d treasure forever, but potentially in a box of painful memories.

Our older boy Evan (who was two and a half at the time) came to visit Alec for the first time that day and I had both my little boys together. Again, I couldn’t shake from my mind that this was likely to be my only Mother’s Day with both of them. It was a special special time and Evan was so interested in his little brother. Fast forward a year and they adore each other.

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Some other special mothers came to see us and meet Alec that day too – both our mums (who didn’t get cards from us, sorry!) were seeing this new grandson, yet feeling overwhelmed with how to support us – it was happening to their children. My sister came to meet Alec, pregnant at roughly the same gestation (her son eventually born on Alec’s due date) – every time she visited I could see in her eyes the awareness that the baby growing inside her was a similar size and shape, and the overwhelming feeling of needing to keep him tucked up safely inside.

I couldn’t hold Alec. I couldn’t touch him or kiss him. I couldn’t look into his little eyes (they were still fused shut). I was too nervous to change his nappy. However, on that first Mother’s Day, I was able to feed him my milk through a tube for the first time. I was fulfilling something in my role as his mummy. A different Mother’s Day, but one I’ll remember forever.

 

 

 

Blood

Somewhere in the UK, there are 27 people who we are very very grateful to. We don’t know their names, if they’re male or female, old or young, and we’ll never know who they are. We’re grateful to them because they are blood donors, and between March and July 2016, our little Alec had 27 blood and 2 platelet transfusions.

It’s very common for premature babies to require blood transfusions – almost all the ones I know of have needed at least a few during their NICU stay. My sister-in-law was born prematurely 18 years ago and her transfusions have always been discussed in our family. Because of this, I already knew it was a “thing” for early babies and it didn’t really worry me when we first heard Alec needed one. However, having discussed this with other NICU parents, this is a really scary concept to get your head round – transfusions bring thoughts of risks and emergency Casualty-style scenes and it feels really worrying.

A doctor told us that Alec had about a Coke can’s worth of blood pumping round his tiny body. He needed to have loads of blood tests taken and due to his immaturity, his body couldn’t replace the blood itself in the same way adults can. Also, extremely premature babies are at high risk of internal bleeding (Alec had a large bleed on the brain and a bleed on his lungs during the first week) and low haemoglobin requiring transfusion is often an early indication that this may have happened. Sometimes the blood just isn’t managing to get the oxygen round the body effectively and as a result, the baby’s oxygen requirement can increase. Giving a blood transfusion in this instance helps the baby to saturate better. Alec also needed a few transfusions during two of his operations (remembering the long walks to theatre which always involved a nurse carrying a bag containing blood).

As time goes on, NICU parents can become used to blood transfusions, which in many ways, feels like a bit of a weird perspective to have. I remember saying once, “He looks a bit pale, might he need a transfusion?” Other parents have mentioned always looking at the numbers on the blood gas printouts, knowing that if the hb (haemoglobin) was under a certain level, their baby was likely to need a transfusion. Other indicators of possible transfusion requirement are the oxygen levels increasing and more “bradies” (bradycardia: heart rate drop), along with swinging saturations. NICU parents get very accustomed to all of these, and often, the treatment is a blood transfusion.

Today I went to give blood for the first time. I don’t know why I never have before, but I no longer feel it is an option for me not to, knowing that Alec is here because of blood donors. Sam donated too and we took the boys with us – it certainly encouraged some other donors hearing about Alec! Unfortunately it didn’t work out for me this time. My blood didn’t drain quickly enough (they need the full amount (a pint) within 15 minutes), somewhat ironically due to my still breastfeeding and not having enough fluids for both that and giving blood – we only managed ¾ pint. I shed a few tears whilst still sat on the chair as it felt so important to me to have done it. However what I have realised is that I don’t feel squeamish about it, it doesn’t make me feel faint and it wasn’t painful, just a bit uncomfortable (all things I was really worried about before). So in a few months I’ll feel confident about going to try again.

I wrote this post as a bit of an awareness raising, as I now feel really strongly about giving blood! We really don’t know when we or someone in our family might need life-saving blood. If you’re not sure if you can give blood, check out www.blood.co.uk I hope this post has given you a bit of an insight into why premature babies have and need life-saving blood. I hope too that it has encouraged you to perhaps donate for the first time, start giving again if you’ve stopped or reminded you why you donate if you already do.

HOME

On 9th August 2016, 5 months and 4 days after being born, Alec came home to live with his mummy, daddy and big brother. 5 weeks after his due date, having endured more than most of us go through in a lifetime. Having been given a 1 in 10 chance of survival and being dangerously close to losing the battle  at points, our little boy had defied all the odds and was actually coming home.

New home, new baby

We moved into our new house and Alec came home on the same day. I have mixed feelings on this – everyone says the most stressful things in life are moving house and having a baby. If 2016 for our family is anything to go by, I’d agree! In many ways it was totally bonkers to do them both on the same day, but I wouldn’t change it. We’d waited a long time for both of them and it felt like a conclusion of everything that had happened.

A baby is hard work

One of the things I found difficult about getting Alec home was that, although he was 5 months old, he was still like a newborn baby. And having a newborn baby is hard work! He cried a lot, struggled with being put down, sometimes fed constantly, didn’t sleep well at night. Whenever I was finding things difficult, I used to feel guilty, thinking, “I should be just pleased he’s home.” Alec soon settled into life in our family, became used to us all and our environment. The first few weeks of having him home were similar to the first few weeks of having a newborn baby at home, except I wasn’t in pain from birth etc, so I was physically able to get around, out and about and drive etc.

Presenting like a normal baby

Alec was expected to come home on oxygen (most of his “peers” have home oxygen) and with a feeding tube. The fact that he didn’t was just brilliant and we are so thrilled. It really is lovely that he seems like a normal baby. The Alec that we have at home almost seems detached from the Alec who was in hospital. But, we do have to keep in mind that he was very very poorly and could get poorly easier than other babies…

Avoiding illness

It was drummed into us in the hospital that Alec is likely to be very poorly over the winter. One doctor said, “He could sail through, but it’s unlikely.” Because of Alec’s chronic lung disease, coughs and colds could make him very poorly, particularly his breathing. I’ve often had to cancel plans with friends if they or their children are unwell and I hugely appreciate everyone’s understanding about this. We just have to be so careful – we know we can’t totally avoid illness but if we know about it, we do. We wash our hands a lot!

“Hospital is now your second home, not your first…”

I was chatting (over whatsapp) this evening with a good friend who I met in the NICU when our babies were poorly. We were thinking about what it’s like now being home and I mentioned all the hospital visits and she described it like the heading above. It’s so accurate! Alec has had a LOT of appointments. Almost every day there’s a letter through the door about an appointment, or a text reminder so we don’t forget to attend. Extra jabs, weigh in clinic, eyes, ears, dietician, general development, community nurses, health visitors, physiotherapy. They’re gradually decreasing, but he will have involvement from outside agencies for as long as he needs it, as problems become apparent or problems he does have resolve.

Getting back to normal

I found it quite difficult getting back to normal! I had Evan every day again, which was just so lovely. I could suddenly go to toddler groups etc again – as Alec was so well I felt confident taking him, although I’m feeling less like that now that winter is here. Part of me just wanted to stay at home with them both, but also needed to get out of the house too! I suppose the thing that I’ve found hard is just having to drop straight back into normality quite suddenly. I’d been out of normal life for so long, it was quite an adjustment getting back into it.

Surges of emotion

Since being home, there have been a few occasions where I’ve felt really overwhelmed with emotion – there’s an entire other blog post welling up titled “Unexpected tears”. I’ve had to explain to Evan quite a few times that “Sometimes we cry when we’re happy.” Other times it’s been when I’ve remembered something that happened that I maybe didn’t cry about at the time. Usually the tears come when I’m doing something totally normal, and Alec is just there, part of it.

Today is World Prematurity Day, a day where parents and medical professionals seek to raise awareness of the realities and difficulties of having a premature baby. Before Alec was born, I thought that premature babies just needed to lie there, grow and keep warm and come home around and about their due date. The truth is that premature babies are desperately sick babies, who must fight and fight, demonstrating a strength and resilience that you can’t believe can come from someone so small. Often people say to me “He was in a hurry, he wanted to be here…” Yes that’s true. Once he’d arrived, Alec showed us every day that he REALLY wanted to be here, and that ultimately, he wanted to come home and live with us.

“It’s a rollercoaster…” – guest blog from Sam

“It’s a rollercoaster…” A statement that is regularly used by staff and parents alike in the NICU. After 5 months in hospital a rollercoaster is a fair representation of our experience. But what does this statement that can be heard up and down the NICU corridor actually mean? Describing it as a rollercoaster accounts for the sudden changes of direction, the stomach churning drops before moments of apparent highs. Here I’m going to attempt to liken our experience to the theme park attraction.

Exhilarating highs

There were highs. Walking through the corridor I received both high fives and commiserating hugs from staff aware of Alec’s progress. The highs were times when he was extubated and managed to keep off the ventilator for a period of time, when he reached personal milestone moments. These highs though came with a caution. They felt muted. The dips and twists of being on a rollercoaster ruined us from fully enjoying highs. The tone of the experienced staff on the NICU reinforced this. A tentative triumph knowing that the next battle for our little boy was an equally significant one and things could quickly change… but a high nonetheless. There were also lows but we’ve talked about lots of those already.

Speed

The sheer pace of the NICU didn’t allow you time to process. Alec’s birth was one of the most traumatic experiences of our lives but the days that followed didn’t allow us any time to think that through. Often the pace meant that the focus was constantly changing from one essential organ to another (had a hole in the heart, that couldn’t be dealt with because of his lungs, that couldn’t be treated because of a suspected infection… three weeks later we returned to the heart). One day we must try to make space to come back to these moments, only now we are at home I can’t bring myself to think about or read the diary of those days. There was a change of pace. Suddenly the attention changed from being urgent to longer term issues. Eye and hearing tests replaced heart and brain scans and lung X-rays. All followed by an equally challenging season of, “He just needs to grow”.

Not in control

We weren’t the ones in control. Our boy was very much in the hands of the incredible doctors and nurses. Nodding his head towards the sellotaped handwritten Psalm 23:6a stuck to Alec’s incubator (“Surely goodness and mercy will follow him all the days of his life.”), Dr William reminded us: “He’s in good hands here, but he is very much in God’s hands.” These words helped me, as even though, in those very early fragile moments, I was well aware that I was not in control, I didn’t consider this rollercoaster a driverless vehicle. At the same time I felt a sense of sobering responsibility. On our first night we were told to be prepared to ask ourselves two questions. These questions were stuck in my mind for the months that followed:

  1. Are we prolonging his suffering?
  2. Has he stopped trying?

At points we had to consider our wonderful boy’s life through the lens of these two questions. As horrific as they were to answer, I felt a sense of huge responsibility to make these decisions for the sake of my son.

You can’t get off

Catapulted into this ride with no warning, we were stuck, strapped in and now part of this new world of being tossed and turned around the NICU rollercoaster. As the rollercoaster continued to go around and around… the rest of life continued to happen. Would life ever return to any kind of normality? As I think about those months I think we were so far away from normal life. Like many other parents of premature babies, we had significant other life moments that we’d sought to deal with before the baby arrived, i.e. moving house. Instead these arrived at the same time. However, having head space for anything else was almost impossible. Other factors like being with Evan, living altogether as family (at points we were living in three separate places), spending time with friends and many other things that are considered ‘normal life’ were only viewed in fleeting moments as the rollercoaster continued to travel.

These are just some of the ways in which life on the NICU can be compared to a rollercoaster. I never really liked rollercoasters anyway.

BROTHERS (Part 1)

Evan is Alec’s big brother. He has just turned three, but was just under two and a half when Alec was born. Ironically (?), about ten days before Alec arrived, Evan and I were travelling in the car and he said to me, “Mummy, the baby is coming out your tummy 5 o’clock. The baby is sweet. The baby is adorable.” He was very excited about having a baby brother or sister and had plans to tickle the baby, make him/her laugh and share his toys with them. I’m going to begin to reflect (this is Part 1 of BROTHERS; I have no idea how many posts there will be) on navigating the NICU with an older sibling, both the beauty and the trauma of it, the heartbreaking and the precious.

First meeting

We initially weren’t sure about whether to bring Evan to see Alec in those early days because of how he looked. However, as there was a strong chance that Alec might not make it, we came to the conclusion that Evan needed to meet his brother and we needed to have a family photo. It was the best decision we made. It was Mother’s Day, and Alec was one day old:

“Came through the doors of the ward, gave me a huge cuddle: “I’ve come to see my Alec.” On seeing him: “I am Evan. I am your little brother.” Understood that this is the baby that was in my tummy. “He’s got a new bedroom.” Given a nappy to keep. Talked lots about the wires/medicine and his Peter Rabbit. “Hello baby.” Not keen to touch him, seemed to find it a bit much. Just wanted to look at him all the time, prayed together. Very sad to leave him. Wanted to see his strawberry [Evan has a strawberry birthmark on his hip so thought Alec did too]. That evening he said: “My brother Alec is lovely and very special.” And then prayed at bedtime: “Get better Alec. No more medicine.” (6/3/16)

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Being split in two

March 5th 2016 began for me 5 months of feeling guilty wherever I was, whichever son I was with/caring for. It started when Alec was a few hours old and we had to choose for Sam not to travel on the ambulance with him to Addenbrooke’s, so that he could go home and tell Evan he had a little brother. This was so important, but when does a parent ever not travel with their child in an ambulance??? Sam and Evan headed to a toy shop where Evan selected a Peter Rabbit for his little brother’s incubator. A few days in, I realised that the best case scenario, i.e. Alec surviving and one day coming home, would mean weeks/months apart from Evan. I didn’t live with him for over 3 months. “Torn between sitting “uselessly” at bedside when could be with Evan actually doing stuff – and then the horrible thing of leaving Alec alone – under no other circumstance would I leave my child alone in hospital.” (18/3/16) The early weeks, we absolutely had to be with Alec all the time; making decisions, often needing to talk to doctors and consultants and discussing the next plan for treatment etc. Then came the stage when Alec needed to just lie there and grow, and that’s when I tried to have a bit more time with Evan. Then we needed to get feeding established so it swung back again.

Bonding in absence, and having lots of fun without Mummy and Daddy

My older boy moved in with grandparents and was cared for wonderfully by the whole family, who played a huge part in helping him navigate and understand what was going on, bringing him to visit, doing lovely activities with him… But, we missed him. It’s here where we give a big shout out to both our families who looked after our big boy for us. We’re so grateful for the way in which they helped him bond with Alec – photos by his bedside and at the dining table, making play dough models of the family, bedtime prayers… It just wasn’t possible for him to see Alec every day – it was a long drive, the hospital environment was fairly boring for him etc etc, so doing lots of things to help him keep Alec in mind was really helpful. Also they all just had lots of fun with him! Gardening, painting, baking, duck feeding, walks, the park, I could go on.

Having to be brave

Alec was just over 4 weeks old when I felt confident enough to go home overnight for the first time. Evan had come for the afternoon with my parents and I was going back with them. My bag was packed and I was looking forward to a long bubble bath and a glass of chilled white wine. Evan was looking forward to mummy putting him to bed. Just as we were about to leave, we heard that Alec’s bowel had perforated and he was heading straight to theatre for life-saving surgery. Obviously I wasn’t going anywhere. We went to the car to see them all off: “We had to send Evan home. “Mummy in the car too?” I crouched down to explain that Alec was very poorly and I needed to stay with him. Evan sighed, “Okay mummy.”” (3/4/16) In that moment my heart broke a little. He knew and understood that Alec needed me, but I would have probably found it easier if he had just cried – he was making himself be brave.

Getting involved

The nurses were amazing in including Evan when he came to visit. They were always giving him bits of equipment (breathing masks, temperature gauge stickers, feeding syringes, gloves) to take home and play with. He has a doll called Daniel and he played with him, using his doctor’s kit and the bits of equipment A LOT during the few months Alec was in hospital. Often, the wires and equipment that Alec needed at the time, Evan would mirror with Daniel, and as Alec gradually lost the wires, so did Daniel. On one special day, the nurse encouraged Evan to get really involved: “Evan visited and Rachel allowed him to put the incubator lid up and touch Alec. He held his hand, Evan also put a milk soaked cotton bud to Alec’s mouth and he “licked it”. Evan said “thank you doctor,” to Rachel! This was a special family moment.” (11/4/16) Moments like this were so important to Evan, as they helped him to feel more attached to Alec, rather than just gazing through the plastic. The play specialist did lots of activities with Evan and left craft activities for him to do when she wasn’t there, some of which got displayed in the corridors, some were for Alec’s incubator.

I have cried several times while writing this post. When I look at the pictures of Evan, I can see how much growing up he’s done, and what a chunk of his life I feel I missed out on. When I think about what we actually had to do, in terms of splitting ourselves between the two of them, I cry. When I am reminded of how brave and strong they both were, I feel overwhelming pride. When I remember the moments of Evan saying something cute and brightening a nurse’s day (“The Peterborough doctors are beautiful” is a favourite!), or a “first” that he experienced with Alec, I hold them as some of my most treasured memories. When I watch the pair of them now, Evan sometimes the only one able to settle Alec,  Alec looking out for and wanting his big brother, I can’t quite believe how far they’ve come.

Express yourself!

At around 3am on 6/3/16 (Alec was born around 24 hours earlier), I woke up in a hospital ward in Addenbrooke’s and called the midwife to ask them to phone through to the NICU to see how my newborn teeny tiny baby was doing. Instead of phoning through, a health care assistant took me in a wheelchair to see him. Here I met Felicity who was looking after Alec – she turned out to be one of our favourite nurses. We chatted generally, and she asked, “Had you hoped to breastfeed?” I had really hoped to breastfeed, but with these circumstances, it hadn’t even crossed my mind that that would be an option, or that he would be needing milk, or that I would be able to produce any at all! “You need to start expressing,” she explained – by hand initially, then onto the hospital grade double pumps a couple of days later. This was something amazing that I could do for Alec – to play a part in feeding him!  All my hopes of breastfeeding this time (it hadn’t worked out with Evan) I now held very loosely, but I was totally determined to give this my absolute best shot and do all I could.

Why pump milk for a premature baby?

“Breast is best” – a phrase that gets used a lot. In this instance, breast milk was the only food that Alec could tolerate, and he was able to start on dribbles of milk feeds at just a day old. Breast milk for premature babies can help to prevent both chronic lung disease and NEC, along with generally building up immune system and antibodies. Babies that small can’t tolerate handling and so actual breastfeeding isn’t an option, but having mum’s milk is almost considered part of their medical care.

Round the clock pumping

screenshot_2016-11-11-22-51-10I quickly established a bit of a routine with pumping milk: “Got the pumping going today – working out a routine for managing 8-10 times a day.” (7/3/16) It was reinforced by all nurses and lactation specialists that expressing once between midnight and 6am was absolutely vital (to do with hormones and milk production), and that to really establish a supply I needed to pump 8-10 times in a 24 hour period. I did that initially, expressing every 2-3 hours in the day, and setting my alarm for 3:30am. That was a killer. You can dress it up as, “Oh, it’s getting me used to the night feeds,” but as far as I’m concerned, night feeds involve a cuddle with your baby, settling them, caring for them etc, not sterilising equipment, attaching yourself to a noisy machine and washing up whilst a nurse cares for your baby upstairs! But, I kept going. The expressing broke the day up a bit and it was something beneficial to do for Alec, especially as I couldn’t cuddle and soothe him etc. I dropped the middle of the night pumping when he was about 2 months old and enjoyed full nights of sleeping (until he came home)!

In competition with myself

These pictures were taken when I was proud of the volume I’d produced – the middle photo was when I had “graduated” to the larger sized purple tray! I was encouraged to keep a log on a provided chart of details such as how much milk I was producing, what times of day I was expressing, etc. I don’t think I really needed to keep it updated past the first couple of weeks once I had got the milk supply going. However, I quite liked seeing the supply gradually increase and establish, and I always wanted to get more than the day before, so I recorded everything I expressed until 3rd August. Alec was tiny and his daily intake amount   (calculated from his weight) was less than I could produce in a day; also he didn’t get up to full feeds because of the stoma. Incidentally, my most productive day was 22nd April when I produced 551ml.

Milking parlour

 

Each day I’d drop my milk off in a fridge in the “milking parlour” as I called it; actually it was the expressing room. This consisted of three cubicles with chairs and pumps, a big fridge, washing up facilities and a microwave for sterilising equipment. During the 4 ½ ish months we spent in Addenbrooke’s this was jazzed up a little with some floral wall stickers and a radio! The window looked out onto the helipad so sometimes you could see the emergency helicopter landing or taking off – I always wondered if it was Prince William. Sometimes I went to the milking parlour to express, other times I did it by Alec’s cotside.

Milking parlour friendships

The milking parlour was a strange place in that everyone was there for the same reason – they had a poorly baby and they were expressing milk for him/her, which was possibly the only thing they could really do. Awkwardly there was quite a bit of standing around, waiting for microwaves, washing up and cubicles. I dislike awkward silences more than the difficulty of talking to strangers, so I always preferred to try and chat. Some of the conversations that I had in that room led to what I hope will be really long term friendships. Sometimes it was a tearful chat about how our babies were, other times it was helping each other out with what to do/where to leave the milk/how to sterilise equipment correctly. I found it to be a place of mutual support – in the early days I would say about what was going on with Alec and there would be ladies who had been through similar and were coming to the other end. On the other hand, with Alec’s crazy medical history, quite often when other ladies spoke about what was going on with their babies, I had already had some experience of it – in some ways I found that a bit hard, as I didn’t want to come across as “been there, done that”. I do like a good chat, and I often would disappear off to express and be gone a good while!

Milk kitchen

The nursery nurses ran the milk kitchen like a military operation. Each day I dropped my milk off and it was collected. All milk had to be labelled with date and time expressed, my name, Alec’s name and date of birth, along with another label with address and hospital number. The nursery nurses made up the feeds for every baby on the unit each day, including adding medicines and vitamins. Anything that couldn’t be used that day (i.e. I produced more than Alec’s daily amount) was frozen. “Saw a milk kitchen lady and checked they were using the older frozen milk – she went and checked and I had 10 big trays in freezer – around 50 bottles in each!” (21/4/16) Serious stock rotation was going on in that milk kitchen! imag1471

Donation

I didn’t produce huge amounts in comparison to some of the other ladies – however, as mentioned, I produced much, much more than Alec required. I’m very proud to have been able to donate some of my milk to the unit on two occasions: “A lady from the milk kitchen came to meet me and ask me about donating my milk – I went to look in the milk kitchen; there was loads! As it only can be frozen for 3 months, there’s a chance Alec won’t get to use it so they asked for a health and lifestyle profile and I have to consent and have a blood test.” (27/5/16) Sometimes women aren’t able to produce enough milk for their baby, and donor milk, particularly for premature babies, is seen as preferable to formula where possible. My mum called me Daisy for a while!

And all worthwhile…

I would have been happy if I’d just pumped and pumped until my supply went down, or until I just couldn’t keep up with Alec any more, and bottle fed him my milk. In this situation, I was holding breastfeeding very lightly; I was just so thrilled that he was able to have my milk that I was quite relaxed about breastfeeding or not. However, Alec has turned out to be very good at feeding! He’s now exclusively breastfed, with the occasional bottle of my milk (there’s still loads frozen and we’re on July milk!) – this wouldn’t have been possible without pumping for 5 months, as it meant I had the supply to meet his demand by the time he was ready to try feeding. Almost unbelievably, my 23 weeker is “normal” in his feeding habits! I don’t really ever express any more but it was certainly worth it.

NICU Milestones

During the first week of Alec’s life, a week that we genuinely didn’t know if he’d make it to the end of, I kept saying, “I just want to…”, “I’d like to be able to…”, thinking of all the things that, should he not make it, I wanted to experience with him. As I was speaking like this quite often, we decided to write a few things down, and tick off and date them as they happened. Some were very short term, others very far away in the distance. It was important to us that the majority weren’t medical – we’d let the doctors and nurses deal with those. These were things for us and our family and things that were “normal” for being a parent.15027494_10100514268561323_6496832856339394821_n

Here I’m going to reflect on reaching these milestones, using our diary entries (we journalled every day of our 157 days in hospital) and thoughts on it now. All the milestones were written down between 5th and 12th March and I’ve dated here when they were achieved.

  1. Alec having my milk.

The reality of the expressing journey on the NICU is probably another entire post but very soon after arriving in Addenbrooke’s I was encouraged to start expressing milk – with my older son Evan I struggled to produce any milk in the early days so with the added traumatic circumstances this time, and the early arrival, I didn’t really expect to get anything. Alec wasn’t able to start feeds initially but I was desperate for him to have at least some of my milk, as it would mean that I’d played a part in feeding him. “Susannah said, “I really want him to get to having my milk.” When we got back to Alec his nurse Emily said Susannah was able to feed him her milk through a tube.” 6/3/16 (1 day old). Alec’s first feed was something like 0.6ml, a tiny amount for a tiny boy. I was so thrilled that we were already able to tick off a milestone – it meant that despite peering through a plastic box to look at my son, unable to touch or comfort him, l was the one feeding him – I was able to fulfil something of my role as his mummy.

  1. Holding him.

“I was able to hold him whilst they changed his bed – made me realise how small, he just nestled in my two hands, seemed quite chilled out with me.” 14/3/16  At 9 days old. We’d barely touched him – his dislike of handling along with inability to regulate temperature, added to the big tubes breathing for him, cuddling wasn’t an option. As I lifted his tiny body out of the incubator for a bed change (literally 2 minutes) I was fairly shocked at how little he weighed. I’d been petrified that I would never have a cuddle like this, a choice to hold him.

dscn5357Five traumatic weeks later, I’d gone home overnight in the midst of problems with Alec’s long nutrition line, believed to be the source of an infection; the doctors had removed the line and were now needing to put a new one in, a complicated fiddly procedure, involving a lot of handling and stress for Alec. Sam phoned me and said that at the doctors’ rounds, the consultant William had decided that the aim of the weekend was for mummy to have her first cuddle and they’d deal with the line tomorrow. I hurried back to Addenbrooke’s that afternoon, where, at 6 weeks old: “I got my first cuddle! Skin to skin for 2 hours, very precious, another big milestone!” 16/4/16

Two days later, the line still wasn’t in but the nurses were keen for daddy too to have that first cuddle with his tiny boy: “Our nurse though to our surprise offered me a hold. Holding Alec was amazing, a moment at points we didn’t think we’d get to. I kissed his head. The last time I did that was before surgery! A very special moment. He was calm and slept – no crying!” 18/4/16  44 days old, 30 weeks gestation.

  1. Seeing his eyes.

When Alec was born his eyes were still fused shut because he was just so early. Soon after the birth a consultant had been  to see us suggesting that  Alec’s  gestation was possibly as little as 22 weeks – they believed this because of his eyes! He’d really had no hope for Alec and wasn’t sure if the team at Addenbrooke’s would be able to take him. So from then on we couldn’t wait for him to open his eyes! At two weeks old: “After a difficult day we came up to see him at half time in the France V England rugby match. Alec opened his right eye. It was amazing to see! Another milestone.” 19/3/16 Alec’s lungs were really very poorly in that first two weeks, very damaged, leaking, and collapsing. I was shown the X-rays by one of the consultants and started to really grasp just how sick my little boy was:“I cried on Dr Simpson. Felt very upset rest of evening, ’til we saw his little eye open!” 19/3/16

  1. Breastfeeding.

As mentioned above, breastfeeding didn’t work out how I wanted it to with Evan. This time around, when I was pregnant, I was hoping to breastfeed but equally was a bit more relaxed about it. When Alec arrived so early, I assumed it would be out of the question. He was immediately tube fed and I felt fairly satisfied that I was the one feeding him as he was having my milk. I just kept going with the expressing so that I could feed him for as long as possible, and would have a good milk supply if he was able to feed. The Speech and Language team kept coming to observe Alec, watching for behavioural cues of him being ready. Once his breathing support had been weaned down enough, we were able to try: “Time to have a try at breastfeeding – Alec latched straight away! Cried and looked around a bit to find what to do but just did it properly, no fuss/pain etc. So special.” 22/6/16 (few days before due date) This is probably one of the proudest moments of my life, both of him (he’d been expected to take longer to “learn” because of some of his issues) and of myself!

  1. Wearing clothes.

imag1398Premature babies don’t wear clothes to begin with, for a variety of reasons: they don’t make them quite small enough, doctors and nurses need easy access for observing and treating, the incubators are at a humidity level to treat the babies’ delicate skin. During Alec’s first week we bought him a tiny baby grow – in the hope he’d get to wear it one day. We knew he might not, and if he didn’t, we could keep it as a memory. A couple of months later, “I stayed into the evening, it was Felicity [a favourite nurse]. Nice chat with her… “Have you put him in clothes yet?” She took me to the linen room and we selected a few items!” 11/5/16 The next day, I was very excited to dress my baby for the first time, but I waited: “And then Sam came – when we put him back in his incubator we put a little baby grow on him!” 12/5/16 (just over 2 months old)

  1. Breathing for himself.

When Alec was first born he was ventilated – a machine was breathing for him, essentially life support. Ventilation turned out to be our biggest concern and worry the whole time he was in hospital. We were desperate for him to breathe on his own, and so were the medical staff! It took several tries:

First time – just over a week old: “Tried to take ventilator off, managed a couple of hours.” 13/3/16 (8 days old)

Second time, with the use of steroids to help Alec’s lungs: “He said, “We need to be aggressive, we need to get him off at all costs. I want to do it whilst I’m on so I can take responsibility for success or failure. I say this as someone who has looked after small babies for a long time. I’ve braced myself, you need to, too.”” 28/3/16″Felicity had him overnight. I think she was literally holding him all night to calm him. Due to the high percentage of oxygen he required,  we fully expected him to be back on the ventilator.” 29/3/16 (just over 3 weeks old)

Third time, after a horrific fortnight where we almost lost Alec: “At rounds George changed his mind and decided to extubate… He said that he’d rather treat the “clinical picture than numbers”… Alec went back into CPAP at 13:45 and was quickly on oxygen around 30-40%… So proud of him, a really great day – no steroids or other support and he’d done it!” 14/4/16 (nearly 6 weeks old)

  1. Evan to hold him.

Evan was so interested in Alec from the moment he arrived. He stared at him for lengthy periods (for a 2 year old!) through a plastic box, then was gradually able to hold his hand, touch him etc. Once Alec had made enough breathing progress and was fairly stable, and we were a bit more confident in Evan: “Time for Evan to have his first cuddle – he’s ready for it and needs it and so is our Alec. I have never seen Evan so excited. Almost uncontainable, yet patient, beautifully behaved. Just a delight. Evan had a pillow on his lap and Alec lay on it. We didn’t really need to support much but hovered! He held him for half an hour, kissing him, stories, talking about the wires. Smiling and so proud. V emotional.” 22/6/16 (few days before due date).

  1. Move to Peterborough.

imag1817Moving back to Peterborough NICU was more than just the convenience of not having to drive on the A14 every day; it meant progress. It meant that Alec no longer needed the very intense environment of a Level 3 hospital. It meant that he was getting better. It meant that he was getting closer to coming home. For weeks we had been watching other families return to their local hospitals, thrilled for them, but really wanting to get back to Peterborough ourselves. Finally, late in the day on the day after his due date, the time came: “I decided to stay and go on the ambulance with him, even if it meant being up all night. I knew it was bonkers, but I needed to do it! Bed was confirmed, ANTS were on their way… We got in the ambulance and set off to Peterborough!” 28/6/16 (day after due date).

  1. Read him his Bible story book.

As Christians it was important to us to input spiritually into Alec’s life, telling him about God and Jesus, no matter how long or short that life would be. My mum gave us a little book of Bible stories- we’d been encouraged that as we read to him, he’d start to recognise our voices. We decided we wanted to complete the whole of the book. As we really didn’t know how long he’d be with us, we were reading sometimes four stories in one sitting and finished the book on 9/3/16 (4 days old).

“And do you have a medical background?”

“And do you have a medical background, are you a nurse?” the consultant asked kindly.

“Er… no, I’ve just spent over 5 months in hospital with my baby.”

This conversation came after Alec had been at home for a few weeks and I’d had to take him to A and E after an accident. The consultant wanted to hear a bit more about him before discussing what had happened, and I  launched full pelt into Alec’s medical history.

I realise I’ve become almost an expert in things that, prior to March 5th 2016, I knew absolutely nothing about. As the months went on, we became more confident and gained more understanding of medical conditions and terminology. Here I’m going to go round the body and explain about some of the things that we had to quickly learn about.

Brain

Premature babies are at very high risk of brain bleeds, which we were warned about on the first day Alec was with us. That night, while nurse Felicity cared for him, he suffered what was described by the consultant the next day as a “significant, severe” brain haemorrhage; as time went on it became known to us as a Grade IV IVH, Grade IV meaning the most severe on the scale (they go from 1-4), and IVH standing for intra-ventricular haemorrhage. This was likely to cause severe damage and therefore disability. As the bleed was on the ventricles, this could inhibit the flow of fluid around his brain, causing further damage. The bleeds correct eventually on their own, but they’ve left the damage behind. Alec had regular head circumference measurements and brain scans to check how the bleed was resolving and whether it was causing any fluid build up (hydrocephalus). As time went on, the consultants were happy that the bleed had resolved and there were no further concerns from it. Alec was described as being at “very high risk of having problems”, but it would be very unlikely that that bleed would cause any further damage. The most difficult thing about this kind of prognosis is the unknown… scans and images don’t really tell the story of how the baby will actually be, so we wait, seeing how he is, when he reaches milestones etc. We are just enjoying him as he is!

Heart

Alec’s heart began beating 5 minutes after he was  born; the paediatric team had begun working on him as soon as he was delivered. I lost count of how many echocardiograms (ultrasound scans on the heart) Alec had during those early weeks. He had a PDA (Patent Ductus Arteriosis). Essentially, a hole in the heart. It’s to do with the blood flow. When a baby is in the womb there is a little hole that lets blood go to the lungs, as well as the other organs. This usually closes when they are born, but, for premature babies, the hole doesn’t always shut, meaning that some of the blood that should be pumped round the rest of the body gets back to the lungs and puts pressure on them  (I think). Dr Simpson explained it very well and drew a diagram on a paper towel for us. The usual treatment to close a PDA is a course of ibuprofen, and, if that doesn’t work, a trip to Great Ormond Street Hospital to close it surgically. Initially Alec responded to the ibuprofen and it closed, which was such a relief. He then became very poorly with his lungs and it turned out that the PDA had reopened. The trouble with the different treatments is that they can have a knock-on effect elsewhere, and the consultants wouldn’t feel able to treat it unless he was healthy in other areas, so the PDA had to be left alone whilst they dealt with first the lungs, and then a very poorly tummy. A few weeks later, it transpired that Alec’s PDA had closed of its own accord!

Lungs

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Ventilator – very sophisticated!
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CPAP machine – provides pressure and oxygen

The organs that caused us the most worry. Although I’d had one steroid injection before Alec arrived, the complete dose is 2 jabs, most effective 24 hours before the baby is born. So the one injection I had probably didn’t have much effect on Alec’s lungs. It was 30 minutes after birth that he first let out a little cry. He was ventilated, with a machine doing all the breaths for him. I don’t think I really grasped that this was life support until a few days into life in the NICU, when I realised how much the doctors wanted to get him off the ventilator. After a week he was ready to be “extubated” (breathing tube out), as he was starting to breathe over the top of the machine. This first time he only managed a couple of hours. The next couple of weeks were fairly horrendous as Alec’s lungs became very poorly. They kept collapsing, leaking air and at one point he had a pulmonary haemorrhage. The longer he was ventilated, the more damaged they would become, yet he couldn’t breathe well enough without the support. On a couple of occasions we were called up to his cotside in the middle of the night as he had pulled the tube out and the doctors and nurses had had to urgently replace it. As a result, they often had to sedate him, to stop him putting himself in danger by extubating himself before he was ready. Alec was sometimes given oscillation, a “wobbly” form of ventilation, thought to be gentler on the lungs. Eventually, it was felt to be the best plan to give him a course of steroids to assist his lungs and help him get off the ventilator – he managed 6 days on a CPAP machine, before becoming seriously ill with his tummy. Back on the ventilator for another 2 weeks, at one point on 100% oxygen and still desaturating. Slowly but surely he improved and was extubated again, much more successfully this time. Alec still required breathing support, and during the next few months, he went through BiPAP, CPAP, CPAP bubble, hi-flow, vapotherm, low-flow… before eventually shedding all tubes about a week past his due date. Although Alec is now well, he still has a diagnosis of Chronic Lung Disease, because he was still needing support for breathing at 36 weeks (gestation). We had expected him to come home with oxygen so the fact that he hasn’t is amazing! We have to be very careful of coughs and colds over the winter as they could make him very poorly.

Gut

img-20160725-wa0011We will never forget the moment when we walked into Alec’s room and found him surrounded by a sea of green scrubs, and our consultant for the week saying, “Things have taken a very serious turn.” Alec’s bowel had perforated. We were taken into the quiet room for an explanation of what was now going to happen. Alec had had suspected NEC (necrotising enterocolitis) a couple of times before and been on and off feeds, although never actually had it confirmed. However, this time the consultant suspected that it was NEC, the deadly bowel disease we had been dreading. It causes parts of the bowel to die and can then cause other organs to start  shutting down. Alec was going to theatre urgently for life-saving surgery. The surgeons didn’t know what they were going to find or if they’d be able to sort it. Our tiny boy miraculously survived the 3-4 hour operation and returned to us with a stoma: a small part of his bowel on the outside of his tummy that the poo would come out of into a bag. They’d found no evidence of NEC. A week and a half later, a trickle of breast milk feeds began again, which he tolerated well. Over the coming months, my confidence went up and down with changing the stoma bags. Sometimes I cried daily over it: “Not had a cuddle for ages because of my cold – all I’m doing is the bags. Hate doing them but feel like I can do a better job than some of the nurses, so feel I have to.” (30/5/16) Other times I took control and took the lead on when they were to be changed, doing them myself with an extra pair of nurse hands! “The stoma bag lasted well and I changed it, successfully. Feel much more happy and confident about it now.” (3/6/16) When Alec began breastfeeding, the amount of feeds he was allowed from me was limited to 1-2 a day, because his input and output were being carefully measured, and sometimes he was needing replacement fluid. He wasn’t able to go up to full milk feeds until after the stoma was reversed because of his high poo output, staying on nutrition that went straight into his bloodstream. Alec’s stoma was reversed about 3 weeks after his due date, and, within a few weeks, his system was back to normal. He has a couple of big scars on his tummy but no other lasting effects.

Eyes

Babies who are born prematurely are almost always exposed to high levels of oxygen, because they usually have issues with their lungs and breathing. This is obviously absolutely necessary to keep them alive. However, it can unfortunately  cause the blood vessels at the back of the eyes to grow abnormally. If this happens, in the worst cases, the retinas can detach because the blood vessels kind of pull them away. In the overwhelming majority of cases, the opthalmologists are able to save the eyes by performing laser surgery on the retinas. They routinely test  premature babies’ eyes to check for this eye disease, known as ROP (retinopathy of prematurity). The test is incredibly invasive and unpleasant. The first time Alec had his eyes tested, I stayed (I have a thing about leaving either of my boys when they need me – it shouldn’t matter if it upsets me or not). I was usually quite strong with such things but this one was horrific. The next time, I looked away, and all the subsequent times I waited outside the room until the ophthalmologist was done, on the condition that the nurse would look after him and comfort him in my place. Alec did have ROP, which the doctor thought would resolve itself. However after a few weeks of no improvement, they decided to carry out the laser surgery, on both eyes, about 10 days before his due date. This was successful! I have heard that Stevie Wonder is blind because of untreated ROP. Alec is almost certainly going to need glasses but that seems to be the extent of his eye issues for now.

Blood

Premature babies have a lot of blood taken to check for different things: infection, jaundice level, levels of different electrolytes, and most often, blood gases, which are a check of how successfully the heart and lungs are managing to get oxygenated blood around the body. Because they have so much blood taken from them (on Alec’s poorliest day he had something like 13 pokes), premature babies struggle to regenerate it in the same way a healthy adult would manage, so they often need transfusions. Alec ended up having 27 blood transfusions during his 5 month hospital stay, and 2 platelet transfusions. We could always tell the difference afterwards – he looked pinker and more healthy, and his oxygen requirement went down.

On arrival in Peterborough Hospital NICU, a large group of consultants were doing their “rounds” and Alec’s very very long medical history was related to the group so they all knew what they were dealing with. “Well, Alec has just picked up the extreme prematurity textbook and found out what he needed to do!” remarked one, referring to the fact that our tiny baby has suffered with almost every possible problem relating to his prematurity. Yes he has, but has endured and come out the other end with a strength, determination and tenacity that we cannot help but admire. He is, and always will be, one of the strongest people we know.

“On the cusp”

“And how old is Alec?”

“Just over 4 weeks old, but not yet 28 weeks’ gestation.”

“And he was born when?”

“At 23+5…”

“Ohhhh, on the cusp.”

This was our exchange with the anaesthetist as he discussed with us how he was going to look after Alec. We’d just kissed him for the first time and were about to leave him in an operating theatre, with what looked like about 20 green scrubbed up medical professionals, for a major operation on his bowel. He was very very sick, still weighing less than 1kg, and we didn’t know if he’d survive the operation.

As we left theatre, making our way towards the food court, where we’d wait for the next few hours, we thought again about what had just been said. The anaesthetist had been very kind and well meaning, but we knew exactly what was meant. On the cusp. Of what? Viability.

Viability. A word we heard a lot. The point at which, during a pregnancy, should a baby be born, there is a chance that they could survive. This used to be 28 weeks, but, with advances in medicine, it is now considered to be 24 weeks.

A few weeks before, I had gone into hospital with complications when I was 23+3 weeks’ pregnant. The registrar explained to us that with the contractions I was starting to have, there was a risk of miscarriage. The doctors and midwives were very caring – at one point, in the middle of the night, I was offered the option of a paediatrician visiting me to talk about what would happen if the baby was born, which I declined as I didn’t think that would happen.

As the next day went on, it became clear that 24 weeks was the magic number, and protocol was determined by this. For example, they weren’t “allowed” to give me the steroid injections (which dramatically improve the baby’s lungs) until 23+6. The lovely consultant overrode this and started them at 23+4… I was put on bed rest, trying to get me to Monday when I’d hit 24 weeks and the baby would be considered viable.

The consultant spent the Friday trying to find a hospital that would be able to take both me and the baby – Peterborough NICU is able to care for babies born at 28 weeks’ gestation. The thought was that if I did go on and give birth, I’d already be in the right place and we could avoid an ambulance journey for a tiny baby. Addenbrooke’s were only able to “accept” a baby under 24 weeks if they weighed over 500g. Again, potentially viable if heavy enough. I had a scan and the baby looked well and healthy, and over 500g – Addenbrooke’s agreed to take us. We met with a paediatric doctor who explained that our baby had a 10% chance of survival if it was born.

Alec weighing over 500g (a “hefty” (for a 23 weeker) 714g) meant that a paediatric team was present at the birth to resuscitate and treat him. I’ll be forever thankful that in the weeks leading to his birth I’d had an insatiable hunger for all things sweet and had been dousing my food in sugar and syrup (horrifically unhealthy I know!), unknowingly fattening my boy up and potentially playing a part in saving his life.

Before this happened to us, I had no idea of the vulnerability of a baby who starts to arrive between 23 and 24 weeks’ gestation. At 24 weeks, they are considered viable. Before 23 weeks, my understanding is that generally, there wouldn’t be a paediatric team called for the birth. But between…

“People kept on using the word “viable” all through the time in hospital. To me that didn’t make sense; I’d felt him kick! And now he was still alive…..” (Sam, 5/3/16)

We are under no illusion that we walked a knife edge for those two days. We’re grateful that I was able to get a scan (I was told that we might not be able to on a Friday). Grateful for a wonderful consultant who did everything she could to set us up should the baby arrive, even going against some protocol. Grateful to the midwifery team for looking after me – the quick arrival was a shock to everyone! Grateful to the paediatric team for coming to the birth and saving our little boy’s life. Grateful to Addenbrooke’s for accepting our baby. Grateful to God for looking after us and hearing our desperate prayers…

Yes, Alec was “on the cusp”.

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