Having a urinary catheter in overnight means I can’t get up to visit Bumble and that’s absolutely heartbreaking. I feel like the worst mum in the world, having one baby absorbing all my attention and one totally neglected in a room down the hall in another ward, but there’s nothing I can do. Even once they take the catheter out I find I’m still hesitant to go and visit Bumble, I feel so unbelievably guilty that he’s in the situation he’s currently in, that I didn’t cook him long enough – or as my step-mum says I “had him on grill, not bake”
I eventually head down to see him an hour or so after I can move freely again. This is actually a few hours after the catheter comes out as it takes a little while to get up and running again – out of bed to the chair and back, a slow trip to the bathroom – but I’m determined to get moving as soon as possible and to not take too many painkillers so that I can recover as fast as I can. I indeed surprise the pain team by using the morphine pump just 2-3 times (and even then only because people told me I should), and requiring the minimum of slow-release morphine capsules, anti-inflammatory & paracetamol.
I’m so nervous as we push open the door to the room 11 (one of the Level 2 NICU rooms), what have I done to my baby?!? Bumble is the first incubator on the left as you enter the room and I see his tiny body stripped to the nappy and curled up on his tummy in the warm plastic cocoon. My heart melts but yet I feel so sad that I couldn’t give him a better start in life. My poor little Bumble.
He’s actually doing really well, despite the fact that he’s hooked up to a million different monitors and has a feeding tube coming out of his tiny nose. He was only on CPAP for five hours before he was determinedly breathing all by himself. Now he’s just being monitored to make sure he keeps it up (he had one spell of apnea in the first night), can regulate his body temperature a bit better, and until he puts on a little weight. I stroke his little head through the incubator window before the nurse comes to open the side and help me lift him out for a cuddle. Oh my gosh my darling little Bumble. We snuggle in the armchair for a while then attempt a breastfeed. My clever little man latches pretty much perfectly straight away and even re-latches himself when he comes loose. I’m so proud of him.
The next few days pass in a blur. Racing between NICU and my ward, feeding the boys, making sure I keep Bee’s temperature stable, expressing via breast pump to encourage my milk to come in, trying to coordinate times in my room with having my obs done, visitors, and the million program coordinators (hearing, dental, eyesight) that the hospital sends our way. It’s exhausting, especially as my husband is working this week (we’d stupidly thought him working would be ok as I’d be in hospital for a while) and I’m largely doing this by myself. I really struggle after a few days and beg him to take a day or two off work.
On day 3 Bumble is doing well enough to be transferred from level 2 down to the Parent Infant Nursery (AKA PIN, level 1 NICU – the lowest risk level). He’s now in a more comfortable open plan room with the potential to share with up to 12 families (in two conjoined rooms) rather than the four in level 2. He’s in a heated cot rather than an incubator, and my husband and I now have more control over his day-to-day care – ideally we do as much as possible but have help on hand as required. All the nurses are lovely and we can also bring Bee down from the ward to visit. It’s great, and I love that he’s thriving so much.
The following day it’s decided that Bumble is doing well enough to be allowed down to my ward room for feeding in an attempt to get the two boys back together as soon as possible. So on the evening of the 29th of September J, the PIN nurse, wheels Bumble’s cot through around 7pm. It’s so exciting having the boys together in our own room and we try to snap as many photos as we can before their feed (Bee isn’t so keen on this idea – not only does he hate having his photo taken but he’s also super hungry). I try my first tandem feed, which seems to go ok, and we have a few more cuddles before taking Bumble back to the NICU Nursery.
It’s barely half an hour later when the NICU nurse is back in our ward room. “Now I don’t want you to worry,” she says “but [Bumble’s] temperature and heart rate both plummeted when we got him back to the nursery so we’ve had to put him back in an incubator to try and stabilize him. We’ll keep monitoring him and see how things go.” And then she’s off again. Already emotional after having to say goodbye to my little Bumble (and not helped by the fact that today’s the day my milk’s come in meaning a surge in hormones) I totally lose the plot and cry hysterically for about three hours. What an atrocious mother I am; I couldn’t get pregnant, I couldn’t stay pregnant, and now my poor little man is suffering because I haven’t managed to cook him right. Thankfully my husband, who was due to go home, stays until 2am to comfort me. I’m a mess.
I’m pretty puffy eyed the next day but manage to pull myself together enough to tend to Bee and get down to NICU to check on Bumble. It’s horrendous to see him back in an incubator, monitors bleeping, him struggling to do just the basic things his body requires of him. I find myself subconsciously trying not to get too attached to Bumble (waaaay too late for that!) just in case we lose him. I know it’s silly as it’s pretty unlikely that will happen and that he’s way closer to coming out than staying in, but when you’ve sat and watched your baby (mildly jaundiced and half the size he should be) in an incubator stop breathing for 10 seconds followed by two strongly gasping breaths it’s hard not to prepare for the worst even though you expect the best. 10 seconds is ages, stop reading this right now and count that out, hold your breath if you have to, that’s a long time for a 5 day old.
Thankfully his struggles don’t last long and within a day he’s back in his heated cot and managing to maintain both his heart rate/breathing and, to a lesser extent, his temperature. We have to take his temperature at every feed/nappy change and add or remove layers of clothing or bedding accordingly. It’s a common theme for premature babies who just aren’t able to regulate their body temperature the way their older counterparts can.
Everything about Bumble is monitored so closely; body function, feeding, temperature, growth, yet Bee is almost forgotten about by the hospital staff. Officially he’s a patient of Ward 96 but they hardly ask about him at all. It IS hard as he spends so much time with me visiting his brother in PIN, and I guess the ward just aren’t used to babies spending more than a day or two with them before discharge, but the difference in care offered between NICU and the ward is astronomical, even with simple things like the vitamin supplements offered. NICU supplement premature babies with Vitadol (a multivitamin solution administered once a day), and there’s evidence to support the idea that it’s beneficial for all babies to receive this but especially premature ones. The ward do no such thing and don’t even seem to know about it – something the NICU staff comment on “the wards are a bit behind the times with things like that”.
I find it a little distressing especially considering the only difference between the two boys was 260g at birth. NICU won’t take Bee as he’s too big and doing ok, the ward won’t take Bumble because he’s not over 2kgs. I sometimes think “if only I’d managed to grow him an extra 20g the boys would be together” but then we’d have missed out on the amazing care, advice and help we’ve received through NICU so I guess it’s better this way. Every cloud has its silver lining as they say.
There are some things that Bee DOES get examined for but on the whole his hospital care is pretty minimal. Both boys get their near-mandatory hearing test. This involves a giant headphone being placed over one ear with sensors positioned on the baby’s head, which measure the response of ‘the hearing nerve’ to sounds played through the headphone. Bee is due for a feed the first time the screeners come so is fidgety and unsettled. Of course this means they get a ‘failed’ response as the baby needs to be almost perfectly still with no noise or electronic devices in the room. I have to switch off my phone and the heated cot mattress that Bee sleeps on, and hope like crazy that my newborn child remains motionless enough for the test. They’re dreaming right?!?
To make matters worse the hearing screening people turn up at whatever time they feel like, seem to get annoyed if it’s not a convenient time, and can never do any of the other times you propose despite the fact you know your child will be more settled then. It feels like a total waste of everyone’s time. Another example of the backwards system the ward, or even the hospital, operates on.
So after failing his right ear in the first test due to movement, or possible fluid in his middle ear (again something common in newborns, especially those born via c-section), then passing his right ear but failing his left due to dreaming in his sleep (again, WTH! How are you supposed to stop a kid dreaming!) he’s referred to an audiology specialist for further testing once we leave the hospital. They’re apparently not allowed to test them more than twice in hospital regardless of the fact that there were obvious causes of the failed result and the fact that it was different ears that he failed on in the two separate tests. I’m so pissed off, but lucky for her our second screener was really nice so I don’t take my anger out on her. Thankfully Bumble passes his test in both ears the first time round. Being that little bit smaller and working that little bit harder to survive (as well as the fact he’s spent a few days in NICU by that point) means he’s quite a bit more settled and remains still for longer periods of time. I’m sure that will change as he gets older!
Then there are the other bits and pieces that Bee manages to get included in purely because Bumble gets offered them as part of his NICU care. Regular weighing, extra blankets, various studies and other monitoring. We like to try and help out as much as possible so sign up for an eye test study (this never eventuates due to timing issues) and a body mass/nutrition study aptly titled ‘PeaPod” (Pea is one of my nicknames).
By day 6 there’s huge pressure for me to be discharged from the ward. Despite the fact that they’d hardly have a clue what was going on with Bee, both him and I are deemed well enough to leave hospital. While I can’t wait to get out of there, in my mind there’s a big issue with leaving Bumble, especially when he seems to be doing so well. Theoretically after a c-section I’m not supposed to drive for a few weeks, which makes the idea of me going home even more ludicrous. It would be different if both my babies were under NICU care but to have one at home and one stuck in hospital just seems so cruel. Anyway, I needn’t have worried. The NICU staff once again save the day, with C, our family liaison, assuring us that we won’t need to go home and that she’ll ensure one of the NICU family rooms is available for us.
And that’s exactly what happens. On the Friday, at exactly a week old, the boys, move with my husband and I into one of the parent rooms (essentially a studio apartment within the NICU ward) just down the hall from the NICU room that Bumble has been staying in. The idea is for us to spend a few nights in there, to adjust to being new parents with premature babies, doing everything on our own but with help at hand nearby should we need it.
The weekend passes in a blur of feeding, visitors, and takeaway food. It’s harrowing having the boys (somewhat unused to each other after a week apart) in a small area with nowhere to go. The boys are pretty good about things but the endless temperature checking, feeding (first one then the other), medicating (extra vitamins), monitoring and recording is exhausting. There’s so much more to do and worry about when your babies are premature, but (thankfully) ours are at the lesser end of that spectrum, other people have it so much harder.
We ask for Bumble to remain on his apnea monitor for at least the first night in the parent room as we’re a bit paranoid about his breathing. This turns out to be more of a nightmare than something that eases our mind as, for a while, it keeps going off. The first time this happens is incredibly traumatic. I still have it stuck in my head that he’s going to be taken from us and I quickly lose the battle to hold it together. After we’ve checked on him to make sure he’s breathing my husband goes to get help and I sit feeding Bee (woken by the noise of the alarm) with tears streaming down my face. The nurse, H2, is amazing. She’s there in a flash, making sure Bumble is ok then dashing off to make us hot drinks despite our insistence not to. The monitor continues to go off throughout the night until it’s discovered that the monitoring pad is not quite positioned properly under the mattress. It’s horrible but at least we work out the problem and can rectify the situation for the following night.
The worst night comes on Sunday. We’ve solved the problem with the monitor and Bumble’s breathing is ok, but something sets them off after the 8pm feed and the twins scream hysterically for the rest of the night. Bee had an unsettled night when we were back on the ward, crying constantly for a few hours but it was nothing like this. We try everything, different burping techniques, cuddling, rocking, more food, gripe water, formula, my husband’s father even comes in to try and help bringing new swaddles. We formula feed through the night in case it’s something in my breast milk setting them off…it’s later suggested that it’s perhaps the orange juice I had throughout the day that wrecking havoc on their inexperienced tummies, but who knows. Whatever it is it’s a long 10 hours until daylight.
And daylight brings it’s own new challenges. We’re completely over the parent room by this stage. I’m wanting some real food, some space, and, after 10 days in hospital with next to no natural light, some fresh air. We’d been told by the pediatrician on Friday that we should be fine to be discharged Monday and can finally head home, he’d even completed all the paperwork (again a little stupid as Bumble’s weight was incorrect by the time we’re due to leave), but our unsettled night and subsequent multiple formula feeds makes the young doctor question the call to discharge us and they threaten to keep us in another night.
I’m visibly upset by her comments knowing full well we were only trying to do the best for our kids and plan to continue breastfeeding now that it’s a new day – she didn’t even ask why we had formula-fed (and of course formula is seen as the evil no-no, puh-lease!) Lucky for us the lovely nurses and family liaison take our side and manage to convince the doctors that we know what we’re doing enough to be able to take the boys home. We give Bumble a bath, pack up our bags, and with the nurses help, get the boys into their capsules/carseats. Then at 3pm we’re set free, out into the big wide world to have a go at being parents. Wish us luck!