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Molly’s birth (Part 4 – Nepean NICU)

Posted on: October 11, 2011

This post is a monster! It has taken such a long time to write. Partly because I was a little sketchy on some of the details, and partly because it was such a difficult time for us. I also had trouble rendering the whole ordeal into words that made any kind of sense. It was hard, but here it is at last. I hope it’s not too wordy for you. Skip this one if you like! This story continues on from Parts 1, 2 and 3.

Nepean NICU had a completely different ‘feel’ to it than Westmead. It always seemed busy and bustling, rather than quiet and insulated, the way Westmead seemed. The NICU at Nepean was arranged into four bays, with the smallest, sickest babies in Bay 4. Babies in Bay 1 were nearly ready to go home. Molly went into Bay 3, so we knew we would be having quite a long stay. Molly’s first nurse at Nepean was called Stephanie. She explained to us how the NICU was organised, and let us know ways that we could be involved in looking after Molly. I was determined to visit Molly twice a day and do her ‘cares’, which is what they called changing her nappy, and giving her a sponge bath occasionally. I wanted to be as involved as I possibly could, so I booked myself in to do her mid-morning and late-afternoon cares. At that point she was on a two-hourly feeding cycle, so my visits were at roughly 10am and 4pm, from memory. These changed as her routine changed, however.

Molly in her new Nepean NICU humidicrib

She pulled her tube out, so this was a rare pic of her whole face

Because Molly was still under phototherapy lights (for jaundice) when we first arrived at Nepean, I wasn’t allowed to hold her again just yet. But the nurses assured me that I would have lots of opportunities for ‘kangaroo care’ (skin-to-skin contact), as soon as possible. Kangaroo care was actively encouraged as it has been shown to improve premature babies’ growth and development significantly. However, it was also important that she be given lots of time to rest, so that she could use every last calorie to grow. Nepean also had a slightly different visitor’s policy: they allowed three people to visit at a time, but restricted visitors to parents, siblings and grandparents only. It was very lucky that Molly’s Aunts and Uncles saw her while she was at Westmead, because they didn’t get to again until she was discharged six weeks later. They also didn’t allow visitors who were sick, for obvious reasons. I absolutely dreaded coming down with a cold during Molly’s stay because I couldn’t bear the thought of not being there to see her every day. It was bad enough not having her at home, but to have no contact at all would have been devastating. Luckily, even though Tiernan had at least two or three viruses during Molly’s stay, I managed to avoid them all.

I went home to my baby boy and my husband the night Molly was transferred, if not happy, then at least happier. And so began a weird time where my life basically revolved around the hospital. Tom was at home to help for the first week, but we decided that he should go back to work and then take more time off when Molly came home, so that we could all bond and get readjusted together. It was quite a juggling act, trying to find care for Tiernan while I visited the hospital. He divided his time between daycare, grandparents, family and friends, all of whom Tom and I were extremely grateful for. When other arrangements couldn’t be made, I took Tiernan to the hospital with me to visit his sister. He was so little (still a baby, really), that none of it made any sense to him. But he went along with it and coped beautifully. I also made sure we had some quality time together, just Tiernan and I. I couldn’t help thinking that, if things had gone to plan, we would have been spending lots of time, just the two of us, right then, as my teaching prac would have been over, my assignments would have been completed, and Molly would not have been with us, yet. Oh, the guilt. The crushing guilt that I was failing my children because I couldn’t be with both of them at the same time. I really think that if Molly had been my first baby, then I probably wouldn’t have left the hospital much at all until she was out. This wouldn’t have been at all good for my wellbeing, I’m sure. I’m also sure that the nurses would have encouraged me to take some time to myself. During our stay, I noticed that some other mothers of premature babies had made the decision to return to work until their baby was home, and start their maternity leave again then. Heartbreaking.

Every day I was reminded of how lucky we were that Molly was so strong and healthy, despite her diminutive size. I overheard a conversation between some nurses about a baby in the next bay who was now both deaf and blind due to a botched birth. Another family, with their baby only about half Molly’s size, had already been at the hospital for two months, and still had several to go before discharge. Two parents I said hello to and inquired about their baby in the parent’s room told me their baby was doing well, but his twin brother had died. The only thing I could think of to say was, “Oh my gosh, I don’t know what to say. How awful.” Molly’s start in life was tough, but it could have been a lot worse.

That’s not to say that it wasn’t the most difficult experience I’ve ever been through. I remember that nights at home without her were the worst. I often cried in Tom’s arms. Tom was brilliant. He didn’t try to make it better. Just listened and made allowances for my crabby moods. About a week after Molly was transferred to Nepean, we received some frightening news. A paediatrician came and saw me while I was sitting with Molly. He explained that they had done a routine brain scan, which they do on all premature babies in the NICU. They found that Molly had a grade I brain haemorrhage, which she probably sustained during birth. He quickly told me that it was basically a bruise, and that it would probably heal on its own. He said they never even used to tell parents about grade I’s because they aren’t really of concern, but do need to be monitored in case they progress to grade II, or worse. There are four grades of brain bleeding, with grade III and IV being very serious and likely to result in permanent brain damage. The paediatrician tried his best to reassure me that there really wasn’t anything to worry about at this stage, but of course I was terrified. I had been confidently picking her up and holding for a few days now (Molly was out of her humidicrib by then, and I was allowed to hold her and do kangaroo care as much as I wanted). But this news made me nervous again. When the doctor left and I had finished cuddling Molly, I wrapped her and put her back in her bassinette. It was a plastic hospital bassinette, and the nurses often tilted them so that the baby’s heads were higher than their toes, to help with reflux and respiration. I was so shaky that, when I tried to tilt Molly in her bassinette, it slipped out of my hands and dropped into the horizontal position with a loud clunk. Nobody in the room batted an eyelid, and neither did Molly, who was sound asleep. But I was mortified. I thought this little jolt might cause Molly’s grade I haemorrhage to become a grade II. I fought back tears, and urgently asked the nurse if Molly would be okay. She was very kind and reassured me that she would be fine. Molly had follow-up scans every few weeks to monitor her haemorrhage. There was no change at first, but the second follow-up revealed that it was healing, so she was given the all clear. We were so relieved. It was only a small worry, but one that we carried with us for many weeks. Thankfully, all was well in the end.

Out of her humidicrib and into a bassinette

Another quite awful thing happened when Molly was about two and a half weeks old. She had been moved to Bay 2 when she came out of her humidicrib, and had been making good progress. Meanwhile, at home, Tiernan had an awful cold. We became very concerned with his breathing during the night and eventually decided to take him to emergency. He wasn’t exactly struggling to breathe, but his respiratory rate was very high, and I could see that he was working hard. After spending most of the night in emergency, we eventually saw a paediatrician, who suggested trying Ventolin and steroids to see if that made a difference. It did, so he was admitted into the children’s ward for treatment and monitoring. And with that, we now had two sick babies in hospital. To make matters worse, Tom was due to leave for Black Springs (out west, near Oberon), for his brother’s wedding. We had already decided, weeks earlier, that I was going to stay home. I was sad to be missing the wedding, but it didn’t feel right to leave Molly in hospital and travel all that way. But now Tom had to go, and leave us all at the hospital. Poor thing. He tried to enjoy the wedding, but was worried about all of us. The only good thing was that we had already asked my mum to come and stay for the weekend to help me juggle Tiernan and hospital visits. Instead of helping me at home, she helped me at the hospital. Luckily, Tiernan responded well to the treatment and was home within 48 hours. It was his first of many asthmatic episodes, brought on by colds. The whole experience was very weird and upsetting, but we got through it. Thank goodness for Mum!

Our last piece of bad news came soon afterwards. We were living in a rental property, and the real estate agent informed me over the phone that
the owner had decided to put the house on the market, so could I please have the house ready for inspection? I was flustered, to say the least, but I let her know of our situation and she was very kind. She managed to postpone the proceedings for a few weeks, but we still ended up having our lives ‘on display’ at literally the worst time! I did my best to keep the place clean and tidy, but there was only so much I could do, in between hospital visits, expressing milk six times a day, trying to care for myself and Tiernan, as well as several other things that new mothers are usually excused from, such as grocery shopping and running errands. It was just another thing we really didn’t need, as was the worry that we would have to pack up and move soon. Fortunately, the house was slow to sell, and the people who eventually bought it were friends of ours and were happy for us to continue renting from them.

Got milk?

In amongst all of this bad news, we also had good news. Molly made good progress, and was out of her humidicrib much sooner than I had expected. Her feeds were slowly increased. She was gradually weaned off her supplements. I remember looking forward to Molly’s regular ‘weigh-ins’, which occurred on night shift, every three nights. Each time Molly gained weight, I felt that she was closer to coming home. She gained weight quite steadily, with only one or two little plateaus along the way. As Molly grew, her OGT (orogastric tube) was swapped for an NGT (nasogastric tube), which was slightly more comfortable for her, and meant less tape on her poor little mouth. After a few weeks, they started to allow her one ‘sucking feed’ per day. They had to be very careful with introducing this, as sucking a bottle, or breast, requires a lot of energy, and premmie babies just don’t have much to spare. So, at first it was only one per day. Sometimes they gave her expressed breast milk (EBM) in a bottle, and sometimes I was allowed to put her to my breast. This was encouraging, but also frustrating because she was still too little to attach properly, so she never really got much of a feed this way. But it was another small sign that we were moving up in the world.

My regular routine when arriving at the NICU was to spend absolutely ages looking for somewhere to park; end up walking nearly a kilometre; buzz myself in; scrub my hands at the sink and then use the special anti-bacterial gel (years later the smell of it still takes me right back to the NICU); take my expressed milk to Molly’s box in the freezer; say hello to Molly; have a stickybeak at her notes. See, the thing about hospitals is that no-one is very forthcoming with information. I’m not sure whether the notes were purposely left there for parents to peruse, but was pretty sure that, legally, no-one could withhold medical information about my daughter from me. So I always read the notes. Then I would do Molly’s ‘cares’, and hold her while she was tube-fed, or I would bottle feed or (attempt to) breastfeed her. Sometimes I found out interesting things from the notes that I may not have found out otherwise. Such as the time “Test for TF? negative” was written in there. When I inquired about it, the nurses weren’t sure what it meant and so paged a doctor for me to ask. They had tested her thyroid function because of her protruding tongue, which can be a symptom of hypothyroidism. In this case it wasn’t, hence the ‘negative’. She still has a protruding tongue.

Molly in a size 000000 suit

My favourite memories from the NICU were the times I spent doing kangaroo care with Molly. Just sitting and bonding with my tiny baby hidden down my shirt – as close as possible to where she should have been, right under my heart. I sometimes wonder whether Molly has any subconscious ‘memories’ of the time we spent together like that. She has always been a Mummy’s girl. As Molly’s routine changed and she started having three-hourly feeds, due to the increasing volume of milk she was able to take as she grew, it became easier for me to visit mid morning and then in the evening, after dinner. I would sit with her until about 10pm, and listen to the nurses doing handover, which was another great way of getting more information about Molly’s progress and their plans for her care.

I think Molly was about four weeks old when she finally made it to Bay 4. It was so exciting to think that this would be the last step before she came home. By now, she was having two to three sucking feeds per day, and was almost ready to start a new feeding pattern, which would be tube, tube, suck, or TTS (ie, her 9am feed might be a tube, then 12pm would be tube, and 3pm would be suck, then back to tube at 6pm and 9pm, then suck at 12am, and so on around the clock). Babies would stay on this pattern for between four to seven days, to make sure they were still gaining adequate weight, before being moved up to the next pattern, TSTS. Then came SST. Then full sucking. Then home! As Molly went on to TTS, I made sure I was there for her sucking feeds so that we could practice breastfeeding as much as possible. This helped my morale and my milk supply. She still wasn’t really getting much this way, so I would give her a bottle feed afterwards as well, just to make sure. Things were going very well, until Molly came down with a cold, which set her back. Her nose was so congested that she was having trouble breathing while bottle feeding, so they had to swap her NGT back to an OGT. I found this really difficult to cope with, as it made it impossible for her to breastfeed, and because the nurses were seriously considering dropping her back a stage so that she wouldn’t expend too much energy on feeding. Sensing my frustration (so close to home, yet so far!), a wonderful male nurse called Morgan explained to me that these tiny babies just don’t have the energy stores that full term babies do, so if you push them too far, they can just collapse. Big time: back on respirators, full tube feeds, the works. He helped me to put this small set back into perspective. Much better to just give Molly time to get over this bug slowly, than make her work too hard and end up back at square one, which would be devastating. So, I had no choice but to just go with it. Strong little Molly recovered from her cold and was back on TTS in about a week. And then she was ready for the next step, TSTS. I think it was about then that we started trying a nipple shield for her breastfeeds. It made a huge difference, as she was able to latch on much more easily, and suck and swallow actual milk, straight from me. It was very exciting. We were getting closer and closer. During this time, Molly was also taken off her monitors. I was surprised to discover that she had no leads attached when I went to change her nappy one morning. Confused, I asked a nurse why she wasn’t plugged in, and was told, “Oh, she doesn’t need that any more!” I was happy, but couldn’t help wondering how I was supposed to know if she was breathing or not! (Look at your baby, not the monitors, the nurses were always telling us).

Molly and her 'plugs' before they abruptly disappeared

We finally made it to full sucking feeds. The last step. Soon we would be going home. Then we received the news that Molly was being moved to the children’s ward, because they needed the NICU beds for sicker babies than Molly. I had mixed feelings. On the one hand, it would mean I could stay the night with Molly and feed her myself around the clock. On the other hand, I knew and trusted the NICU nurses so well that I wasn’t sure about taking her up to the big, busy children’s ward. Surely she was too little for that. I especially didn’t like that Molly was put in the furthest room from the nurse’s station, right next to the gate at the entrance to the ward. Anyone could come in and take my baby, and nobody would notice. (I should say that the entrance to the children’s ward has since been changed: it now has a glass security door and visitors must be buzzed in). But as it was, there was no way I was going to leave my baby’s side while she was in there. In a way, it was nice because it finally felt like I was really her Mum, and not just borrowing her occasionally. But it also meant I was stuck there at the hospital, and wouldn’t be able to see Tiernan unless Tom brought him to the hospital, or did a swap with me. So, after two days on full sucking feeds, I started to push to bring Molly home. Our new paediatrician resisted at first. She wanted Molly to be weighed at least twice before we left. But I was adamant. I explained that I had another young child at home who needed me there, too. She finally agreed that we could leave a couple of days later, as long as we promised to come back for another weigh-in after two days at home. Deal.

So, on Friday 31st October, 2008, we finally, finally left the hospital!! It wasn’t quite what I imagined. In the NICU, I had watched many families take their first steps off the ward together. There were many congratulations from nurses and fellow NICU parents. There were cards and gifts exchanged. There were tears, and promises of return visits. Up on the children’s ward, it was just Molly and I, as Tom was working. I had to leave Molly with the nurse while I ran outside and installed her car seat into the car that Tom had dropped off for me that morning. It took ages. It was very warm outside, so I was hot and bothered by the time I got back inside to pick up Molly. I put my tiny baby in her oversized pram, and wheeled her outside, for the first time ever. Nobody wished us well, or waved us off. Nobody hugged us and said they’d miss us. It was all a bit deflating, really. But never mind, we were OUT!

Not too happy about her first pram ride

Too tired to care by the time we got to the car

I put Molly into her seat. She looked like a doll. Still way too small. I drove so very carefully all the way home, because I was worried she would slip out of her seat if I made any sudden movements. I arrived home for the first time in days. Tom’s Dad was with Tiernan. He said a quick hello to Molly, and then had to leave for work. He left me with them both. I wanted to beg him to stay – this was all a bit too quick. Suddenly I had these two children and I had to look after both of them at the same time. That was a big reality check. I had been so focussed on getting us out of that hospital, that I hadn’t been thinking too much about what I would do once we were all home. I sat in the lounge room, feeding Molly and playing with Tiernan, and let it all slowly sink in. Together at last. Help! But at least we could finally celebrate Molly’s birth properly. One thing that really struck me during Molly’s hospital stay – so many people congratulated us on her birth, but I just couldn’t see what was so good about it. Sure, we had a beautiful girl and we were quite sure that she would be fine, but she wasn’t supposed to be here yet. It was too early. I also found it difficult to relax and have fun while Molly was in hospital. It’s almost like I would catch myself laughing or having fun, and subconsciously remind myself that I was supposed to be sad. I was sad, but I didn’t have to be every single second of the day. Once Molly came home, it felt like I was free to be a whole person again – happy, sad, excited, nervous, joyful, fearful… all of it. There wasn’t anything holding me back anymore. I could be happy that we had our Molly, and that she was here with us.

Molly's first sleep in her bassinette at home

And just like that, it was all over! Our NICU experience was the most difficult time of our lives so far, but it wasn’t anywhere near as bad as it could have been. We were so lucky to have such supportive friends and family surrounding us. Molly had follow-up visits with the paediatrician for the next year, until her growth had well and truly caught up. She also had some sessions with a physiotherapist to help her gross motor development; some visits from a lactation consultant to help wean her off the nipple shield after several months; and she is still seeing an ophthalmologist annually to monitor her vision. But she has had no negative outcomes from her prematurity. I feel so incredibly lucky that we live in a time and place where we have the medical resources that not only saved Molly’s life, but ensured that she has thrived and will experience life to its fullest. Very, very lucky.

Happy family

2 Responses to "Molly’s birth (Part 4 – Nepean NICU)"

Ah, more of the wonderful birthing stories. Am loving this, though also can’t wait to hear all about lil Neave’s birth too!

Great post – loved all 4 of them – so emotionally moving, I felt like I was there with you. Well written and a great record of a difficult but important time of your life.
PS Love the carseat photo – the buckle is nearly as big as Molly!

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