NICU Aftercare

I was hesitant whether to discuss the after care I have received after Oscar left the NICU. I feel like it would be such a bitter post to complain as all Doctors and Nurses, I’m sure, are just doing their best. It’s been so complicated having Oscar registered with a Doctor’s Surgery, where he has his immunisations just like any other baby, but his aftercare lies with the NICU. The Doctor’s Surgery don’t have any experience or knowledge, per say, on premature babies - so they don’t deal with any aftercare. This would be fine, if the NICU, took full responsibility for the aftercare of their previous ‘patients’ if you will. 

When Oscar left the NICU he was prescribed with 4 large glass bottles of ‘Phosphate medicine’. Each bottle expired after a week of being open and all opened bottles had to be kept in the fridge. It was a clear liquid and I was given a dozen syringes to administer the medicine. The odd thing was, nobody explained to me what Phosphate was (I still have no idea) and just explained that it’s ideal for Oscar’s phosphate levels to be optimum in order for healthy bone development. Oscar had scheduled blood tests every 3-4 weeks to check if his levels were improving. These blood tests began as a heel prick test.

The heel prick test is pretty self explanatory, they prick the baby’s heel which causes it to bleed and they squeeze the foot so that blood comes out and they collect it. The most frustrating thing about coming in for these blood tests was the temperature outside, compared to the boiling hot temperature of the toasty NICU. It was the middle of winter, early January so to take the baby out the house I had to dress him in several layers, gloves, hats - you name it. To bring a baby into the NICU, take him out what I imagine is an already uncomfortable carseat, undress him while he squirms around, to then prick his foot, slap a plaster on and get him dressed again - was an ordeal.  Sometimes he would be asleep or have just had a feed so would sleep straight through the blood test and that was a good day for everyone. But, sometimes he would cry and I just felt dreadful. 

After his first blood test, it then came back that the medicine hadn’t improved his phosphate levels in the way they had imagined, so they asked me to double the phosphate medicine and increase the Abidec from 0.5 to 1ml twice a day. “What’s Abidec?” I asked. Abidec, was a multivitamin that had been prescribed and not given to me when we left the NICU. I couldn’t believe it, we had been discharged for 3/4 weeks, in which time he needed to be taking a vitamin supplement and hadn’t because they forgot it. I even checked our records and the Doctors notes said Abidec - I of course read these notes when they were originally given to me, but of course the word Abidec meant nothing to me.

The worst bit of Oscar’s aftercare was that the Doctors had no real idea how much to increase the medicine by. Everytime they would take a stab in the dark, “Hmmmm… ermmmm…. ok….. so….. maaaybe… increase it by…. double?? Twice a day?” for them to be so vague about the medicine I was putting in my premature, tiny little baby was worrying to say the least. It was as though the dosage didn’t correlate with how much his levels were increasing/decreasing. It was all one big guess. 

Oscar was diagnosed with Jaundice when he was in the NICU which is easily identifiable by the baby’s skin being unusually tanned. It also causes babies to be very sleepy, which initially was why he couldn’t breastfeed for long as he kept falling asleep. To treat jaundice they use a blue light on a crane, above the incubator, then the baby is kept in their nappy so as much skin is showing as possible and they wear small white goggles to protect their eyes. Oscar’s jaundice levels improved after a couple of days worth of light treatment and they were happy his levels weren’t of any concern. To test that the jaundice had gone, or that at least his levels were improving, he had to have a blood test and a urine sample.

For this blood test, it was at the hospital rather than the NICU so it was all new to me. We went in and had the blood test in a tiny, pokey office. Instead of doing a heel prick blood test, they took his hand, bend his wrist forward, inserted a needle into a vein on the back of his hand, let the needle hang out his hand while blood dripped out the other end, that they collected. This was really traumatic and he cried, and I cried. It seemed so much more invasive and brutal than a quick heel prick test. We then had to get a urine sample. They told us to take his nappy off and just wait with a plastic cup until he wee’d and catch as much as we could. We couldn’t use the office we were originally in so they booted us out to this random common room. They gave us a puppy pad to lie him on incase the wee went everywhere. We sat and waited, and waited - 20 minutes had passed. We then got told that they needed room to do a training session and the volunteers hosting it seemed really annoyed we were there. We then got screened off and they continued to use the room. So we were in the corner of a random room, with a naked baby, waiting for him to pee. He then started to get hungry so I had to feed him. This meant keeping him naked, feeding him, having the puppy pad on my lap to catch any spills, and Luke sat with the plastic cup waiting for him to pee. We finally got the sample after 40 minutes. 

In terms of blood tests, I have always been told ‘No news is good news’. This was true throughout my pregnancy too. If the hospital were concerned about the test results, they would ring, so if you don’t hear from them it means they have no cause for concern. With the jaundice test results, nobody told me anything but Oscar still looked alarmingly orange.

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I presumed that because I hadn’t heard anything in over a week - he was OK. So I rang to check. They informed me that he was still jaundice but that his levels weren’t of any concern and that his body was capable of levelling out itself. I would have thought that if the baby was still jaundice, this would warrant at least a courtesy call to fill me in - but I had to chase up the results myself.

A couple of blood tests went by - the older he got the more alert he was. I dreaded taking him. It was so infuriating that they were guessing the dosage of the medicine willy nilly and just waiting to get the blood tests done to see how accurate their guesses were. To them, a blood test was nothing, to me, it broke my heart. It seems the heel prick was only the way the NICU did it because every external blood test at the hospital was the horrible method in the back of his hand. Sometimes he would have just had a feed and even be asleep and with a bit of numbing spray on the back of his hand, he didn’t even wake. They would use a tube of sugar water and put it in his mouth which would distract him as of course it was super tasty for babies.

At one appointment, the nurse was really blunt with me. Oscar was in a good mood, happily sucking on his dummy. She abruptly said ‘OK well he’s hungry so do you want to feed him?’ I felt really pressured, and guilty that she would insinuate I hadn’t fed him when he needed it. So I took my boob out in front of the two nurses in the tiny office, sat on a stool and started to feed Oscar. His little face, looking so content as he fed away, eyes closed looking sleepy and milk drunk, they took his arm and put in the needle. He screamed and pulled off from feeding immediately to cry and cry and cry. I felt so awful - like I had tricked him into a false sense of security. That I had manipulated and blackmailed him into this horrible blood test. I tried getting him to feed again to make him feel better but his mouth was too busy wailing, wide open in complete hysteria. I started to cry and couldn’t help how bad I felt. I was alone, so it was just me and Oscar and I felt completely useless. I then fed him again outside in the waiting room apologising and stroking his hair, I felt absolutely awful. Even when he didn’t react I would still be a blubbering mess, he hadn’t even flinched one time and the Nurse said “Is he your first? Don’t you just wake up every morning thinking how lucky you are and how much you love him?” I was so full of emotion I just burst into tears - “YES I DO!”

After a few blood test results had come back to say that Oscar’s phosphate levels still weren’t what they were hoping for, they decided to test for Vitamin D. This meant taking two capsules of blood rather than one. Seeing that much blood being taken from my baby, when he had such a tiny body anyway - made me feel sick. His Vitamin D levels came back that they were really low and he was given a Vitamin D supplement. Turns out that the phosphate needed optimum Vitamin D levels to work - why wouldn’t they check for this the first time around?

This meant that Oscar was now on three supplements twice a day. Each doctor just told me to put it in his bottle and that babies didn’t have taste buds so it didn’t matter. I couldn’t believe how ignorant they were being. The Abidec in particular was revolting. It was orange in colour and looked like iodine - it stained EVERYTHING. Walls, clothes, my hands, Oscars face. He only had bottles when he was being looked after by family so for the sake of being able to put the medicine in bottles, it wasn’t worth expressing two bottles a day so I just put the syringe in the corner of his cheek as he would feed and squirt a tiny bit at a time. This meant my bra, my breast pads, my BOOB, his clothes and his face were all covered in this stupid bright orange, disgusting smelling and tasting medicine. 

When Oscar had his Vitamin D supplement prescription written up, I had to collect it from the Doctors, so while I was there I asked my GP if she could explain a little more about Vitamin D levels - “Vitamin D is really tricky to get from foods and would otherwise be generated by babies and adults being in the sun, what with this weather it’s actually really common and most babies and adults across the UK are deficient in Vitamin D. It just means that without optimum levels of Vitamin D he is likely to be a bit sleepy and we obviously want what’s best for him so that he can be nice and lively”. I felt relieved, that it wasn’t anything serious and that the supplement would really help him up his levels. 

I then had a routine check up, his 4 month NICU follow up - this was routine for all babies that stayed in the NICU. This was a brand new Doctor I had never seen before. We went over the most recent blood test results and he sounded really concerned about his Vitamin D levels. I told him what my GP said and he could not have looked more shocked and concerned. He told me that low levels of Vitamin D were really serious and if low enough, research has shown it can have links to cancer. I could not believe that the GP said the baby would just be sleepy, but the Doctor said he could get cancer. For perhaps the millionth time, I cried driving home. I cried with frustration, with guilt, worry, sadness, concern - I felt horrendous. I couldn’t believe all this was going on inside Oscar’s body. He seemed so healthy and happy you would never know anything was wrong with him.

Finally his phosphate levels were at the right levels, thanks to the Vitamin D supplement. The Vitamin D levels then reached the right levels. When I received the call that the Vitamin D AND Phosphate levels were both exactly what they were looking for in a healthy baby. I felt so relieved, finally, he could stop all his medicine, his little body was fighting for itself. I couldn’t believe all the blood tests could finally end. “We will book in a blood test in 6 weeks to check that his body is sustaining these levels while on no medication” I couldn’t believe there was still MORE blood tests to come.

Oscar is now 8 months old and he had this final blood test two days ago. He was an absolute dream and was smiling and happy the whole time, he or I didn’t even realise the needle went in! I had the same nurse again who said would I like to feed him and I said “No thank you I will feed him when I leave.” Knowing full well I never wanted to betray him like that again. I wish I had stood my ground the first time. A day later, a man at the Doctor’s surgery rang. “Hi there, I have just received blood tests back, I think they’ve gone to the wrong place though as I don’t deal with NICU out patients… Did you know Oscar was anaemic?” “No… No I didn’t” “Oh okay well yes, he is anaemic, so I think you should ring the doctor now that ordered these tests.” “Ok… it was supposed to be a vitamin D test, has that come back?” “No, sorry it doesn't state his vitamin D levels, just that he is anaemic, ok? Bye then” I could not believe it. I couldn’t get hold of the doctor at the NICU for a good hour. I Googled it (why, why do I always do this) and scared myself shitless researching anaemic babies. I finally got hold of the Doctor who said, “Not to worry, his iron levels aren’t alarmingly low, just a little lower than we would have hoped to see. That will be sorted with a supplement in no time”

And so it continues… I have no idea if he has been able to sustain his Vitamin D levels as of yet and he is now anaemic… 

This post is by no means to criticise the NHS staff as I know they all work really hard, have a lot on their plate and get paid far less than they should. But the number of phone calls I have had to make to chase results and appointments, the way they dish out blood tests like they’re a walk in the park, guessing their doses, and nobody taking any responsibility for Oscar being under their care and for the information to be so different from one Doctor to the other… my mind is blown how any of this would affect a baby that was seriously ill, with anything other than just ‘low levels’.

Survival tips: Sleep deprivation

Morning

When you wake up after a L O N G night. And your eyes feel drier than the Sahara Desert. It stings to open them and your body feels weak and heavy. Last nights make-up is gluing your eyes together and you’re wondering how the hell you can do this. Here are my tips for when you first wake-up (anything before 6/7am is still considered night time, keep lights off, soft/quiet voices or even don’t speak at all, no eye contact - baby needs to be reminded this is time to sleep not play).

Mint body wash - Take a shower first thing, it will make you feel so much more awake. Sometimes this is easier said than done so I would suggest giving your baby a big feed and putting her in a chair in the bathroom that plays music or vibrates (battery operated of course) and talking to her the entire time, singing songs, making eye contact. Once in the shower, this body wash will make you feel A L I V E. Definitely get a body puff to really lather the product up and ensure you get a good wash.

Brushing your teeth - I do this in the shower. A) to save time and B) because for some reason a minty fresh mouth makes me feel so much more alert and ready for the day than a warm, morning breath mouth (gross ha). I would get a toothpaste that is so minty it takes your breath away and then brush brush brush.

Make-up wipes for eyes - I keep make-up wipes on my bedside table. I find that wiping my eyes in the morning just freshens them up. It stops them from being sleepy and wanting to close again by waking you up. It gets all the left over make-up off and leaves you feeling cleansed. They’re quick and easy and something you can do while feeding the baby/the baby sleeps without having to get out of bed (just yet)

Get jobs done in the morning - no guilty naps - For the first few weeks you will feel like, and people will tell you, not to do the jobs around the house and to soak up your baby and enjoy these days. But lets be honest sooner or later you need to get off your ass and do the dishes. If it’s your first baby you’ll have a lot of time on your hands, especially if you can’t drive for 6 weeks if you’ve had a c section. If you have a reasonably content baby you can definitely find time to do housework and take care of yourself.

I can definitely recommend, after a morning routine to get you out of your sleepy state and feeling fresh and awake - to get your jobs for the day done first thing. This leaves for a guilt free day. If I have to do dishes or laundry, or normally both, but I fall asleep with the baby at 1pm, and 3pm- you can guarantee they would’ve been guilty naps. Naps where I don’t deserve them and still have the thought of all my jobs on my mind on top of looking after a baby. Although its a huge struggle to get them done sometimes, if you aim to have them done before midday, it leaves for a whole afternoon of being a lazy slob/cuddling the baby/sleeping when the baby sleeps. If you have a busy morning it will also make it easier to have an afternoon nap as you’ll be so zonked you will just sink into that mattress.

Quick wash - Tits, pits and bits - If you don’t have time for a shower, definitely just have a quick wash over the sink. It’ll take seconds but make the world of difference and also stops you from stinking.

During Nightfeeds

Repetitive film, no bright lights - During night feeds I would use the TV as a light. It was far enough away that it wasn’t in the baby’s face and would light the room ever so slightly - enough for me to wake up but not so bright that the baby wakes up. I feel like had I put a big light on it would’ve fully woken up the baby and risked disturbing that sleepy state which enables him to (hopefully) fall back straight asleep after a feed. If I used a really subtle light it wouldn’t be bright enough to keep me awake. If you have a hallway or an en suite, keeping a light on in there and cracking the door is also a great idea.

Instead of watching TV or a series, or anything new - I would watch a film that I had seen a few times, and simply replay it over and over every time I woke up. I found that if it was something I’d seen a million times, it didn’t keep me awake enough because I knew exactly what was going to happen/all the words. If it was something I hadn’t seen before, it was too much to concentrate on at 3am when you’re too tired for words. So a film I had seen a few times was the perfect amount.

Don’t get too cosy/warm - if it’s winter, sometimes the heat of your bed is something you never want to escape. We all know the feeling of being in bed and just snuggling back in when your alarm goes off. It’s crucial that you fully wake up to feed your baby as you could fall asleep with them under the duvet - God forbid. You need to stay focused! Sometimes undressing ever so slightly or pulling the duvet off can be a good way to stay awake if you’re slightly chilly you’re more likely to stay awake. 

Stay hydrated - Before bed, I use an Arbonne water bottle because it is PERFECT for this. It has a wide neck which means you can fill the bottle to the top with ice and screw the lid on. This means that as the ice gradually melts, every time you wake up you have cold, fresh water. Nothing worse than either forgetting to bring a drink to bed completely, or waking up in the middle of the night and the only water you have is luke warm. 

Bedtime

Take off all make-up - if you have gotten around to wearing make-up in the day, definitely remember to take it off at night! There is nothing worse than crusty eyelashes in the morning after not having taken your make-up off. It’s also really bad for your pores/skin to leave make-up on so the last thing you need on top of post-partum healing is bad skin. I don’t know about you but nothing makes me feel more ready for bed than putting on fresh Pjs and taking my make-up off. 

Don’t use your phone before bed - O.K. O.K. I know this is easier said than done as we are all glued to our phone but reducing screen time before bed allows your mind to relax and you’ll find it easier to fall asleep. The last thing you need is your brain still ticking over when you’re trying to get as much sleep as you can before the baby wakes up for its next feed.

Go to bed when the baby does - I worried so much about spending time with my partner to make sure we still had a healthy relationship, that I would stay up in the evenings when the baby was sleeping. I soon realised this was stupid because it was valuable time I could be sleeping. I breastfed so the feeds were all really down to me. Luke was still working 9-6 so I couldn’t expect him to help me with night feeds. What worked really well for us was catching up about 10pm. I would go to bed about 7/8pm when the baby did, and manage to get a few hours sleep, which just felt like a nap. I would then wake up to feed the baby and it was the same time he was going to bed. So we would watch an episode of something together and chat for a bit around 10pm and then we still got to fall asleep together like a normal couple. I think the most important thing to remember is these sleepless nights won’t last forever, the first few months are rough but the baby soon settles and/or you get used to sleepless nights and don’t know any different. In the newborn days its all about survival. Do what you need to do to survive! Everyone will soon forgive you if you ignore or don’t have time for them - even if it is just to sleep - you just need to survive.

What I Miss

Feeling your baby kick; it was so exciting to get whoever I was with to rush over and try to feel the baby kick. I remember spending an evening with my best friend just lying down on the sofa both watching the baby roll and kick, getting videos and photos where you can see so clearly a little hand or foot reaching through. It was also so special to get something back from the baby growing inside you. I know that may sound silly, but it would be a pretty dull 9 months if it was just like having a beach ball under your shirt. Having the baby kick was the first form of communication a mother ever has with their baby. I poke you: you kick me. It was also so interesting to see a pattern forming and to know that the baby was going to sleep inside your tummy and when he was up and ready to play. I loved thinking, "I wonder if he can hear the music I'm listening to" or "I wonder if he can hear me and Luke talking and recognises our voices" 

Midwife appointments; it sounds daft but I felt so reassured to have regular check-ups and have someone making sure I was okay and someone I could ask the strange questions I was wondering. It felt like when you become really close with one of your friends Mum's. You have a second Mum. They're always so happy to see you and you feel like they genuinely care when they ask how you are. It's always lovely to say 'See you next time!' and by the time that day comes your bump is a bit bigger, something new has happened, you check the heartbeat together and you just have a connection. My midwife was the best kind, the plump, chirpy Midwife that's so lovely and you just want to hug with a really calm and 'Mumsy' voice. I was really lucky to be able to have straight-forward and positive midwife appointments and definitely don't take it for granted that my pregnancy was low risk. 

The lifestyle; this may sound ridiculous but the lifestyle of eating for two, taking naps, getting smiles from strangers, swanning around buying babygrows, telling everyone 'how far along you are' and only having to worry about yourself and your schedule, is something I miss and will never get back! I wish I had napped every single day, whenever I liked, for as long as I wanted. More importantly, I miss not being allowed to carry the food shopping in. (that shit is heavy!)

The attention; OK, OK, not the most modest thing to admit but I did love being the centre of attention. Oscar is now the centre of attention and everyone wants to cuddle him and gush over how cute he is - he stole my thunder! When you're pregnant, particularly if you're the first of your friends to get pregnant, the whole ordeal is so alien to your group that it does become all about you. The conversation is so different and new from talking about nights out and reality TV to the human growing inside you and what it feels like and how you can't believe it's all happening. I remember reading a tip that suggested not to buy too much for yourself until you have a baby shower, and I remember thinking that's crazy I'm sure we'll just get a few cards and a few cute teddies! Not that I thought my friends and family weren't generous but just that I didn't think that much of myself to expected to be showered with gifts! I never knew how generous, thoughtful and kind my friends could be! We got the sweetest presents and not just at one occasion. We were literally spoilt with gifts at our gender reveal, when Oscar was born and when I had a belated baby shower. 

The anticipation; ignorance is bliss, as they say. I will miss the unknown of what it's like to have a c-section or be in hospital and have a baby. Although I never went into labour, I will now fear all of the above when I have my next child. It will be at the back of my mind that a baby can come anytime and this time I'll really believe it. I will worry my baby won't be coming home with me on Day 1 and that we will end up in NICU again. I will miss the feeling of being sat, wondering what my baby will look like, what his laugh will sound like, what colour his eyes will be. It's such an exciting feeling of wonderment. When you are pregnant it feels like you have been pregnant for years, but looking back now it feels like it all happened in the blink of an eye. I will miss not knowing what was coming next and not knowing what it feels like to have that first kick, or what a baby's heartbeat sounds like, not knowing what it feels like to be 8 months pregnant and enormous. My next pregnancy I will know exactly what to expect and although my memory may be a little hazy when it comes down to it, I wonder if the kicks will be as exciting? I will miss being pregnant for the first time.

Being big; it felt so good to just BE big because you were allowed to be. I really liked having a bump - something to stroke, admire, gaze over. I loved not having to worry about looking skinny, that I could just let it all hang out. I loved wearing baggy clothes and not caring, wearing tight clothes and embracing it. I miss my bump so much and honestly can't wait to be pregnant again!

Checking my app every week; I loved checking my app every week seeing how big the baby was and what bizarre things it compared it to this week. I loved reading the progress of how the baby was growing and how 'today the baby is able to hiccup' - it was so unreal that what I was reading was actually happening inside me. I will miss being fascinated by the smallest feature just because it allowed me to get to know my baby that little bit more.