An epic journey

Baby Number 1….

I had a perfect pregnancy and a natural, pain-relief free labour followed by the delivery of my beautiful 8lb 4oz boy at 41+3 weeks by ventouse straight onto my stomach. We had our first blissful breast feed straight away followed by me having a third degree tear surgically repaired. The tear gave me no problems afterwards and so continued a lovely breast feeding relationship until Charlie self-weaned at 1 year old. He’s now 4.5 years old and I’m very thankful for the support from my husband and midwives that enabled Charlie and I to have this great start.

Baby Number 2: A whole different ball game…

I had a very eventful pregnancy to say the least – a potentially fatal (for the baby) blood clot under the placenta which caused some massive bleeding in the early days; gestational diabetes; severe polyhydramnios (excess amniotic fluid); a three day stay in hospital at 28 weeks for steroid injection therapy to ready my baby’s lungs for premature birth incase I couldn’t hold all the fluid to term; my waters breaking in the night at 31 weeks, flooding my parents’ house and the ambulance (or so it seemed!) while my husband was blissfully unaware and unreachable at Glastonbury festival and then another three day stay in hospital for antibiotics (to limit the chances of infection setting in) and monitoring. During this time, the baby’s heart rate kept dropping because his head was pressing on the umbilical cord, so I was prepped for an emergency c-section. Luckily, they used an internal manipulation technique to try to move him off the cord in a last ditch attempt to avoid the c-section and it worked, so things settled down a bit!

Suffice it to say that none of this was helping me to prepare for birth and breast feeding as I had with my first. However, breast feeding was never really far from my thoughts – obsessed much?! At each new medical development thrown at me in the pregnancy, I researched the difficulties I might encounter and how to avoid them – breastfeeding after c-section, breastfeeding a baby born to a diabetic and also breastfeeding a premature baby. I learnt that if you give birth prematurely, your milk changes to match the needs of your baby and that, as with a full-term baby, nothing can match breast milk in terms of nutrition, prevention of illnesses (such as necrotising enterocolitis – a horrible illness that is common in premmies, especially formula fed ones) and reparation of possible damage inflicted upon babies who are not in the optimum environment. I knew that breast milk was arguably more important for a premature or sick baby than a healthy, term baby, yet still, my research had shown that shockingly low numbers of babies in NICU were breast fed and the dire statistics were depressing – why were so many premature babies leaving NICU being formula fed? I remember crying to one of the nurses as we were shown around the NICU that (amongst the other things worrying me) I desperately wanted to breast feed my baby and, against the odds, give him some semblance of the bright beginning his brother had.

In the ambulance after the birth
In the ambulance after the birth

Finally, at 32 weeks pregnant, I gave birth to my 8 week premature baby within an hour and a half of being discharged from hospital on my lounge floor with my husband and 2.5 year old (plus the 999 man on speaker phone) as the midwives! Max was beautiful and thankfully was making some very quiet attempts at crying. I spent a long time with him skin to skin under my top, on my knees and still attached to him (again, thankfully, as it was a further half an hour before he was given some oxygen) before the ambulance arrived, and with it, a sight for sore eyes – a qualified midwife, who was fantastic and took charge of the floundering paramedics! Max was doing great in the ambulance and lulled us in to a false sense of security to the point where I asked, very naively, if I could try to breast feed him! The midwife said that we’d better let him concentrate on breathing for a while – he was blue and had an oxygen mask on at the time, so fair enough I suppose!

Anyway, on arrival at the hospital, Max was taken straight to NICU and so began our 6 week NICU journey. It was the worst and best time of our lives – the best, only because we had Max – the worst, for obvious reasons. It’s heartbreaking seeing your tiny baby (4lb 9oz) in the incubator, with wires everywhere, knowing that they should still be inside and with you at all times, hearing your voice, comfortable and warm in the absence of pain and hunger. You feel helpless and useless and, I suppose, a little redundant. This last point brings me to the whole breast feeding issue again – I felt that pumping milk for Max was the best thing I could do for him and me. Without it, (in my mind) he wouldn’t get better and I wouldn’t have a purpose. It was something I could do that nobody else could.

Max in NICU

With this in mind and colostrum ready and waiting as soon as the placenta had been delivered, I started pumping. Max spent the first few hours of his life on a ventilator and then was in oxygen in his incubator so we were unable to hold him until about day three. During these three days, I hand pumped like mad! I was well supported with this by the midwives and NICU staff and, for the first twelve hours or so, I took numerous little cups of ‘liquid gold’ in for them to put down Max’s nasogastric (NG) tube. After that point, however, the liquid gold was a little less forthcoming and I was feeling the stress more and more as I could only get a couple of drops out at a time despite pumping for ages. I tried an electric pump but I still could only get a few drops and these were wasted as they got stuck in the pump tubes. The little I got hand pumping was soaked up with a cotton bud and I desperately wiped it around his mouth, as they began (without telling or asking me) to give Max formula – I asked for donated milk, but with no milk bank, what else could they do? I felt better knowing it was only temporary though and sure enough, my milk came in on day three. This coincided with us getting to hold Max for the first time! It was very emotional and from then on, our moments of kangaroo care were everything to us. The second time I got to hold him, I was allowed to try our first breast feed. I was told not to expect much as Max probably wouldn’t be able to coordinate his suck-swallow-breathe reflex or be strong enough to latch. However, he latched straight away and began sucking! Everyone was really shocked and from then on I asked constantly to feed him myself. This is where the staff became slightly annoying to me – we were limited on time to hold our baby and I was denied the chance to feed him myself regularly because they always ‘wanted to see how much he was getting’. This all seemed very backwards to us, but they were the experts so we reluctantly did as we were told.

My first cuddle
My first cuddle

My pumping schedule was very strict. My pump went everywhere with me when I wasn’t at the hospital (I was discharged a week after Max’s birth) as I had to pump at least every three hours. Little did I know at this point that this was to be my routine for the next six weeks! Although I was a slave to the pump when I would rather have been a slave to my baby, obviously, it felt good to know that Max was thriving on my milk, and for the first ten days of his life, this is what he did. It was strange however that Max was unable to poo unless given a glycerin suppository and the poor little thing was having one of these every other day and still not much was coming out. On day ten, Max went into respiratory distress and was back on the cpap ventilator – horrendous! They suspected an infection but none of the tests confirmed anything but antibiotics were started none the less and within a couple of days, he was off the machine and seemed to be recovering. The NICU staff were medically excellent, but it became clear, at this point, that their knowledge of breast milk and breast feeding had a lot to be desired. As Max’s recovery had become unpredictable, they put a lot of pressure on me to have him on formula rather than breast milk. Max was still having difficulty with pooing and had begun to have a distended stomach and was being sick a lot after feeding. I asked if he could have a bowel blockage and they said that it would have been spotted on stomach x-rays he’d had previously.

I arrived one morning, when Max was about two weeks old to find that, without asking or telling me, they had replaced my milk with formula. Nobody appeared to think that it was a big deal until I broke down in tears. I was told that they thought Max may be dairy intolerant and was reacting to the cow’s milk protein in my milk (from my diet). I wanted to go dairy free but was strongly discouraged – apparently, the supplement pills I’d have to swallow were unpleasant and as big as my head (or something like that) and the diet was painstakingly difficult to stick to (it isn’t) and plenty of amazing hypo-allergenic formulas were available for Max apparently. I stuck to my guns and they reluctantly sent a nutritionist to see me (who was brilliant) and I started a strict dairy free diet.

Max appeared to be getting worse and as the formula wasn’t making a difference my husband and I pleaded with them to put him back on my milk which I knew would be more gentle on his tummy. I was also worried about NEC considering his stomach issues made him vulnerable and formula feeding makes the odds of suffering from this terrible illness much worse. They kept saying no to my milk, the reason being that you can’t experiment with a premature baby. We agreed, and therefore couldn’t see why they were willing to give him second best in terms of nutrition, for the very same reason!

Max was still in discomfort and his stomach had grown large and tender and bowel loops were visible through his skin. He was still unable to poo and was now vomiting green sick after each tube feed. X-rays showed air in his stomach and inflammation of the bowel wall. He was started on another antibiotic, made nil-by-mouth and moved to a single room because of the extra care he needed. It was a very worrying time and from my research, I could tell that he had the beginnings of NEC. I knew that a premature baby’s risk of developing this horrendous disease, which kills off parts of the intestine and, if untreated, leads very quickly to death, was due to forcing milk feeds on an under-developed gut and that also, formula feeding a premature infant increased the risk of developing NEC ten-fold compared to his/her breast fed counter-parts. My husband and I were very upset, but ultimately, they reassured us that they had spotted it very early on and that the treatment would work and his bowels and his life would be saved. After days of Max being on TPN (Total parenteral nutrition – a long line inserted into his heart with lipids and fats etc being fed directly into his blood stream) only, he began to show signs of improvement. It was hard to watch him go hungry though. The lipids had ensured that he was putting on weight and he was starting to look chubby, but one of the hardest things was having kangaroo care. It was lovely to hold him once again after not being able to for a while, but he would root around for a nipple in hunger and I was told that I couldn’t feed him. This was heartbreaking.

It had now been two weeks since I had been dairy free and Max’s paediatrician, who was now on holiday, had assured me that at this point, my breast milk would be the best thing for him as it would nourish his bowel. NICU, however had other ideas. I’m sure the reason for them continuing to push formula onto Max was purely because in the short term, they wanted him to be better and it was a measurable, and let’s face it, typical way to feed premature babies, get them fat and therefore to happily leave the unit. To begin with, the staff appeared very sympathetic but I was made to feel selfish, like I was putting my need to breast feed before Max’s needs. In my mind, these needs were one and the same thing.

It felt like I was battling with them and comments from the nurse in charge began to feel very much as if she felt she had to be cruel to be kind – “most mothers would have just accepted what I’m saying and their baby would be on formula by now.” “We need to do what’s best for Max.” etc. There appeared to me to be no reason for keeping him on the new formula; the amazing, magical neocate which is an elemental (pre-digested) artificial milk which allows the nutritionist to add and take out vitamins and minerals according to the baby’s needs, but they insisted. Well, guess what? I have a predigested milk that automatically adjusts in it’s mineral and vitamin content right here ready and waiting. The only difference is that it has bowel reparative and protective qualities; is free (neocate is ridiculously expensive) and is specifically adapted to Max’s needs in particular with many other ingredients impossible to replicate and many which are very beneficial for his long term health as well as the short term. Not to mention the other psychological and emotional benefits my baby would have, long term if we could ensure a breast feeding relationship now.

They were determined though, and neocate was started, and worse, we turned up one morning when Max would have been about 37 weeks gestation to find they had given him a bottle, again without asking or even telling us. To some, this may seem trivial but I was beside myself and my husband was angry too and he told them so. Finally, the nurse in charge let her true thoughts come out – “You need to stop this now, you will never breast feed your baby, even Dr.__ (Max’s paediatrician who was on holiday) agrees. There comes a point where it is cruel not to allow a baby to suck when they’re getting fed!” I was given a bottle of neocate and told to feed him. I did so, crying the whole time, but strangely, although he must have been hungry as he was still on a very limited food intake, he wouldn’t drink from it! The smell of him, that I must have subconsciously been sensing, was gone and was replaced with a horrible smell of fish and chips. It was on his clothes and skin and breath (he was still being sick a lot), and while the nurses laughed at the fact that this artificial milk made him smell like he’d been eating battered cod for his dinner, for me, he no longer smelt like my baby. I kept pumping my milk, despite the stress taking it’s toll on my supply and knowing that everyone at the hospital, bar my amazing husband, believed it to be a futile activity.

Finally, when the nurse in charge decided to have her first holiday in years (maybe we had made her feel like she needed one, who knows?!), one of the consultants decided to explore reasons other than a dairy intolerance as to why Max still wasn’t improving. After examining the x-rays and discussing his symptoms he decided that Max had a bowel blockage! I couldn’t believe that this was being looked into now, when I had suggested that just under a month ago. Max was transferred to NNU in Southampton by ambulance the next day for a possible bowel operation to extract the blockage.

The first thing they did at Southampton, which is a breast feeding friendly hospital, after his observations and tests, was to ask if I wanted to feed Max myself. I think you can guess my answer! They asked if they could see him breast feeding!!!!!! They watched once, and then I was left to do his next three feeds myself. They said that breast milk was best for him, especially if he could extract it himself at the breast! They congratulated me on continuing to pump, and while they couldn’t criticise the other NICU medically, they said it was a huge decision for a hospital to take feeding away from a mum and baby who so obviously wanted to breast feed and asked me to leave pumped milk for him! Over the course of the next four days, they gave him a blood transfusion of haemoglobin as he was dangerously malnourished and had a very low red blood cell count. The action of breast feeding, plus my milk by NG tube and a simple enema led to the blockage of old poo coming out and he was then referred to as ‘an enthusiastic pooer!’ His mustard yellow, plentiful nappies were a sight for sore eyes and he was transferred back to the original NICU, fit for discharge!

We were cheered by everyone on our return to NICU and I handed over the unopened tin of Neocate to the nurse in charge who commented that Max would still need top-ups as all preemies do once discharged. I didn’t really care if that happened, as long as he was getting my milk too, and spent the next three days rooming in with Max who constantly fed to increase my low milk supply. He was on me solidly for three days and nights, only stopping feeding to sleep on my chest every now and then. Far from questioning that behaviour, as I did with my first, I lapped it up and loved every moment! The staff checked on us regularly and administered his iron and vitamins etc but pretty much left us to it. On day three, they weighed him to discover that he hadn’t lost any weight (they are expected to lose it due to the calorific expenditure in controlling their own body temperature and also from suckling by themselves). He had initially been on the 75th centile at birth but due to large portions of time being nil-by-mouth or on restricted feeds, he was now on the 9th centile and was maintaining this. He had pretty much settled down with feeding and sleeping and we were discharged, exclusively breast feeding!!!

Max continued to gain weight well, at times, reaching the 25th centile but at his cardiology check-up in Southampton, they discovered that the innocent murmur was actually pulmonary stenosis (thickening of the artery from the heart to the lungs) and that blood flow was compromised to his lungs. The stenosis was in an unusual position and so they referred us to a geneticist, because his height had also been dropping down the centiles (it’s now off the bottom of the chart). I won’t go into too many details but the first year of Max’s life was amazing, but also the hardest of times. His dairy intolerance was ruled out as a cause of the bowel blockage at 6 months old and so I reintroduced dairy in my diet and did baby led weaning with him at 8 months old, including dairy, which caused no reaction – he loves his food! We have faced agonising waits to see geneticists where various genetic conditions were suggested, tested for and eventually ruled out.

Max was slow with his gross motor milestones caused by low muscle tone and eventually started seeing physio and speech therapists and orthotics (he has a brace on his right leg to hold it into the correct position). He sees cardiology regularly, although his heart condition has thankfully improved due to a cardiac procedure to widen his pulmonary valve at 11 months old (another time when I was thankful for breastfeeding as the nil-by-mouth before operations doesn’t apply as strictly to breast milk). We are pretty convinced now at 23 months old that Max has a condition called Noonan Syndrome which causes, amongst other things, pulmonary stenosis, short stature and low muscle tone and also polyhydramnios in pregnancy, sometimes leading to prematurity. It also can cause complications with the GI system, such as slow bowel motility and, surprisingly, an inability to tolerate oral feeding until about the age of three, due to severe reflux and a compromised ability to co-ordinate sucking, swallowing and breathing. Because of this, these children are often pronounced failure to thrive and suffer dramatic weight loss because the fats they can digest most easily are in breast milk and the majority cannot breast feed or have been put on formula for various health reasons in hospital. How ironic!

Despite all of this, Max is a gorgeous, happy, delightful little boy, who, along with his brother, is the light of our lives! I think it is unnecessary to say it, but I’m convinced that Max’s good health and weight gain is partly due to breast feeding (especially knowing what I know now about Noonan Syndrome), so thank goodness we persevered through the NICU experience and are still going strong with it at 23 months!!!

My two boys
My two boys
Charlie 4.5 years, Max 2 on Thursday
Charlie 4.5 years, Max 2

2 thoughts on “An epic journey

  1. What an absolutely amazing Mummy! you should be so proud of yourself for sticking with your ideals through so much adversity.
    Pregnant Mummy of a 2 year old welling up reading this!

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