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’.