When Charlotte and Esme were still in hospital and a nurse explained to me that some babies go home on oxygen, I freaked out. At the time, I told the nurse that I would rather stay in hospital until their lungs were strong enough to breathe by themselves. However, after everything we’d been through, that wasn’t the case anymore and I no longer feared bringing Charlotte home on oxygen. I trusted that if the consultants said they were happy for Charlotte to go home on oxygen, then I shouldn’t worry that she would stop breathing or struggle to.
Charlotte came home on 0.05 litres of oxygen. It was the tiniest puff of air that went up her nose but she hung on to it. If you held your finger under the nasal prongs you couldn’t feel any air. We were told she was on oxygen mainly to encourage her to grow and get bigger. Without the oxygen she would need to put more energy into breathing rather than her growth.
Charlotte was attached to a large oxygen cylinder when she was in the lounge and when she was asleep at night. The rest of the time she was on a portable oxygen cylinder that came in a rucksack. It was heavy, but we got used to carting it around. Our backs, however, were certainly relieved when she came off the oxygen. We briefly took Charlotte off the oxygen when transferring her from the lounge to her changing table upstairs, where we kept a portable oxygen cylinder.
I initially thought that the tubes would be a nuisance and it would be hard work carrying the oxygen cylinder around and ensuring she was always safely attached but it didn’t bother me too much. However, in the early days I was always paranoid I hadn’t turned the oxygen off or the tubes might have become blocked.
The oxygen company was brilliant and when ordered, they delivered the new cylinders the next working day. The large cylinders lasted approximately six weeks. We had three portable oxygen cylinders and always made sure one was at least three quarters full, but it worked out that we could change the used large and portable cylinders at the same time. Overall, we didn’t find Charlotte being on home oxygen much hassle and we just got on with it. We didn’t know any different.
We spent the first few weeks waking up throughout the night to make sure the oxygen prongs were still up her nose as she had a cheeky habit of pulling them out. Just once in the middle of the night, when I was absolutely exhausted and, I went to change her nappy, brought her back to bed to feed her and forgot to turn the oxygen cylinder back on. Connor went to change her nappy in the morning and noticed it was turned off. I was mortified and burst into tears. I was so cross, tired and upset. I scolded myself for being so irresponsible. Charlotte didn’t seem to have noticed and was absolutely fine, but the guilt took a long time to shift.
We changed the oxygen tubes every Sunday. This involved Connor or me pinning Charlotte down, whilst the other frantically removed the old dressing and replaced it with new dressing and tubes. This was Charlotte’s wriggliest time of the week and she certainly showed how quick and strong she was by moving her head from side to side. She would do anything to prevent this from being a smooth procedure. It took a couple of months and a few arguments before we mastered the fine art of successfully replacing her tubes. I always packed spare dressing and scissors in the changing bag as she loved to pull it off in the most inconvenient of places. It took practice and skill for me to replace the dressing with no bumps and stick it in the right place.
To check that Charlotte was on the correct amount of oxygen, we had to do a nighttime oxygen trace every month. This involved strapping a probe around Charlotte’s foot that sent a message to a machine which measured her oxygen saturation levels. It often went off throughout the night which soon jolted Connor and me awake for fear that she had stopped breathing. The alarm often went off because she was wriggling so we silenced it. The beeps were very irritating and led to a very disturbed night’s sleep. We always dreaded the nights we had to do an oxygen trace. Connor was very good at working out how the SATs monitor worked and getting up to silence the alarms. I was often nervous but keen to find out the results of the trace and always so proud of Charlotte when I heard it was good and she was doing great.
Out and about
Charlotte came out of hospital at the beginning of the high season (October to March) for contracting a cold or winter illness, one of these being RSV. One of these is RSV (Respiratory Syncytial Virus), a very common virus that causes cold-like symptoms, but can lead to breathing difficulties if the lungs become affected. As Charlotte was home on oxygen and had chronic lung disease she was entitled to receive the RSV injection to prevent her from catching it. This involved returning to the Leeds General Infirmary for an injection in her leg once a month from October through to March.
As RSV is very contagious and passes easily between people through hand contact or by coughing and sneezing, I was advised to avoid attending baby classes or exposure to crowds or public transport. At times, I found this frustrating as I was looking forward to attending many newborn baby classes and the opportunity to meet new mums. I got back in touch with an old school friend, the mums I had met in my aqua natal classes and the mum I had met at St. James’s. I was soon busy most days and had developed a good group of friends with babies Charlotte’s age.
Whenever I was out, my ears were so sensitive to coughing. Even if they were a few aisles away in the supermarket or the other side of the street, my ears would detect them and I would move Charlotte away as quickly as possible, terrified that she would catch something. I still do this to this day but the panic doesn’t shoot through me quite so severely. Everyone who visited Charlotte was amazing and always let me know if they or their children had caught a cold or had a cough. We had to cancel those playdates as I couldn’t risk Charlotte catching anything. I knew I couldn’t wrap her up in cotton wool forever but especially for her first winter I avoided any sniffles like the plague.
For me, the hardest part of Charlotte being on oxygen was the stares I would receive when out in public. Some gasped at how small she was but many were looks of sympathy. I was so proud of how far Charlotte had come and during the first few outings I would explain that and that the oxygen was there just to help her grow. I found the stares quite irritating and it often upset me that we were being looked at in such a sorrowful way. If only they knew how far she had come and what we had been through. However, the stares didn’t stop me from leaving the house or visiting, I just learnt to ignore them, not take them to heart and I smiled back at the owner of the stare. As Charlotte got bigger, the stares and comments changed and many thought she was poorly. I had to explain about the oxygen a lot.
If I went out with Connor, I didn’t mind the stares as much. Connor has always been good at putting things into perspective and reminding me of just how well she was doing and advised me to try and take no notice.
Weaning Charlotte off the oxygen
We were initially told that it was likely that Charlotte would be on the oxygen until early Summer. By the end of January, Charlotte had stayed healthy, had managed to steer clear of any colds, coughs or bugs, was eating well and had piled on the pounds. We were told that if she was constantly trying to rip the tubes off her face that was a sign she was ready to come off oxygen. She was certainly doing that and we often woke up to see her sporting the oxygen tubes as a necklace, the rascal. It was beginning to get really hard work to keep the oxygen prongs up her nose or stop her from tearing them off her face. She had developed the art of putting her fingers under the tubes and flicking the prongs out of her nose.
We did an overnight oxygen trace and were pleased to receive the exciting news that we could start weaning her off the oxygen. We were delighted and so proud of Charlotte. We started turning the oxygen off for an hour twice a day for a couple of days then progressed to three hours. It was best feeling being able to walk around the house carrying Charlotte without the oxygen cylinder in tow. I loved sitting on different chairs or taking her into the kitchen while I cooked (we have gas hobs so when Charlotte was connected to her oxygen she couldn’t be close to naked flame). It all felt such a luxury. However, taking Charlotte off the oxygen also brought paranoia. I often watched Charlotte’s face, certain she was going blue between the eyes and around her mouth. She was fine. It took a while to pluck up the courage to leave the house with the oxygen turned off and I think I only braved a few walks without taking the portable oxygen cylinder with me.
When Charlotte was off the oxygen for just a couple of hours a day, we left the tubes on and only turned the oxygen off at the cylinder. It was quite daunting taking her out of the house when the oxygen was turned off. I spent many dog walks stopping to observe the colour of her face or to check she was still breathing. She was the lightest sleeper so I often had to squeeze her toes or tickle the palm of her hand to just see her stir.
A frightening return down memory lane
We were told that there was no protocol to weaning Charlotte off the oxygen but to see how well she tolerated it. We were just reaching the stage when we were going to do another oxygen trace to see if we could take Charlotte off the oxygen for the whole day, when on the 2nd February, she developed a cough.
The following day, I took Charlotte to the doctor. We had managed to escape any form of coughs or colds all winter and this was the first time she had shown signs of being unwell. As it was a Friday, the GP advised us to take her to LGI to be checked out and to put her back onto her oxygen.
I remained relatively calm although deep down I could feel my mother’s worry and anxiety building by the bucket load. After what seemed like an eternity of waiting patiently and praying Charlotte wouldn’t catch anything, we were called in. I even took to breastfeeding her in a private room just to get away from any germs floating around. My paranoia had hit a whole new level. Even though Charlotte was wheezing a little and definitely had developed a cough, the doctor wasn’t too concerned. He advised keeping her on the oxygen until the cough had gone and we were sent home.
I initially felt completely deflated and frustrated that she had to go back on the oxygen all the time as we were so close to removing the tubes during the day. It had become a battle taping the tubes to her face as she was forever trying to rip them off. I hated seeing how sore the tape was making her cheeks. I had to remind myself it was only February and she’d done amazingly to even be weaned off the oxygen so early in the year. I hoped the cough wouldn’t set her back too far.
Charlotte’s cough became progressively worse during Saturday and at 2:30am we were jolted awake by Charlotte uncontrollably crying, heavy chest compressions and running a high temperature. We quickly decided we needed to take her to A&E. We were seen relatively quickly at Harrogate A&E and despite Charlotte putting a lot more work into her breathing and showing heavier chest compressions we were told she was doing this because she was on oxygen. I knew deep down that this wasn’t the case as her chest had never looked like it was working that hard to breathe since we had brought her home. Maybe in hindsight I should have questioned further but at 3am in the morning and after now being told by three doctors that she was ok, we were discharged.
On Sunday, Connor and I were an anxious, worried and stressed mess. By mid morning, Charlotte was projectile vomiting after every feed. In the afternoon I phoned Charlotte’s nurse to ask for her advice. Other than being sick, Charlotte was still smiling and gurgling. She advised to feed her little and often and just keep a close eye on her. As late evening arrived, Charlotte was much worse. She looked paler, was coughing more, her chest was working hard to breathe and she was still unable to keep down any milk. We had been given advice by three doctors and a nurse and were unsure what to do and queried whether we were just being overanxious first time parents. I felt sick with worry.
Before we went to bed we remembered we had the SATS monitor to do an overnight oxygen trace. We attached the probe to Charlotte’s foot and her oxygen saturation levels were reading high 70s. They should have been 95-100%. I phoned LGI to ask their advice. The lady on the switchboard said “If she was mine, I would be ringing 999.” I hung up, felt my colour drain and with shaky hands phoned 999. I had never phoned 999 before, I just about managed to talk and was told the ambulance would be there in twenty minutes. Those twenty minutes passed so slowly. I hugged Charlotte, rocked her and prayed for her. I prayed for Esme to help her. I was terrified. My mind was racing. I couldn’t lose Charlotte too.
The ambulance arrived and decided to take us to Harrogate rather than Leeds as it was closer. I went with Charlotte and Connor followed in the car. We arrived back in A&E again. This time rather than being discharged we were taken to the general paediatric ward. We had our own room and Connor and I shared a tiny single bed. Charlotte’s oxygen requirement had been increased but then throughout the night it was turned back to her normal requirement of 0.05.
As hard as it was being back in hospital and seeing Charlotte attached to the monitors again, with a cannula in to give her crucial fluids, Connor and I felt great relief that we were in the right place. It was no longer our responsibility to make sure she continued breathing. We felt safe. Overall, Charlotte had a fairly settled night.
At around 7am, Monday morning, we were jolted awake when Charlotte’s machine started alarming. A nurse rushed in and before I knew what was happening there was a team in the room with an oxygen bag around Charlotte’s face to do the breathing for her. I couldn’t cope. I walked out of the room with my head in my hands and in tears. I prayed, “Please don’t take my other girl away from me. Please let her be ok.” All of the flashbacks of the pain of losing Esme returned and I could no longer breathe. A nurse saw how upset I was and went to get me a sugary cup of tea.
Charlotte was moved to the High Dependency Room and put back onto the High Flow oxygen ventilator. During ward round the consultant explained she was on the highest ventilation that the hospital had. If she deteriorated any more then she would need to be taken to intensive care at LGI. The Embrace ambulance was notified as she was too small for a regular ambulance and Intensive Care was notified too.
I became upset upon hearing how weak Charlotte had become so quickly. I looked at my little girl and she seemed so tiny and fragile again. I explained to the consultant about Charlotte being a surviving twin and how the fear of losing her, like I had lost Esme, had returned. She reassured me and with confidence said “At this present moment in time, I am not worried.” This was all I needed to hear. My tears dried up and I was grateful for her honesty.
We spent the next few days waiting in dreadful anticipation. It was so hard to see Charlotte so poorly. The feelings of hopelessness had returned. I hated to see her suffering. She was very pale, constantly foaming at the mouth and had such a horrendous cough. She was too weak to breastfeed and had all her nutritional intake through a drip or was tube fed. I returned to expressing.
Connor and I were given the parents’ room where we were able to get better sleep than if we stayed on the ward. They reminded us again about the importance of looking after ourselves and if anything was to happen to Charlotte during the night, they would ring.
On Tuesday’s ward round, the consultant explained Charlotte had caught bronchiolitis. Bronchiolitis is a common chest infection that affects babies under the age of one. Many babies don’t require medical attention and are able to battle it themselves but due to Charlotte’s weak lungs, this sadly wasn’t the case for us. On top of her bronchiolitis, a chest x-ray also showed Charlotte’s right lung to be completely white. This indicated she had caught an infection which had caused her right lung to collapse.
Charlotte’s nurse explained that the symptoms of bronchiolitis peak in severity at three days. That was Monday. I dread to think what would have happened if we had been sent home again on the Sunday night. Hopefully by day six, Charlotte would show signs of recovering. The nurse didn’t have to explain much about the ventilation and said it was always easy to recognise parents who had been on a neonatal ward before.
Each day that passed, Charlotte became a bit stronger and her oxygen requirement came down. She received antibiotics, physio, and two different types of vapour masks. By Wednesday she was strong enough to be fully breastfed. My girl was a true warrior and my worry began to lift. We were out of the danger zone. I felt so proud of my girl. She really was hard as nails.
Memories came flooding back to me as I picked her out of the cot with all the wires in tow. I found I was in a whirlpool of mixed emotions. Part of me felt so frustrated that she was back on the oxygen, had taken what felt like many steps back and the other half of me felt nothing but relief and pride in her.
On Thursday, Charlotte’s oxygen requirement had come right down and she was returned to low flow ventilation. My friend who I met in the neonatal ward messaged me to say some babies who catch bronchiolitis and are on home oxygen, recover so well that they are discharged not needing any oxygen. I liked reading her message of hope. We received many messages from friends and family wishing Charlotte a speedy recovery.
As Charlotte was no longer on the high flow ventilator we were moved out of the high dependency room and into a room of our own. It even had the luxury of a window and a single bed for me. Connor had to return to work but visited in the evenings and then went home to sleep. Now that I knew Charlotte was on the road to recovery and spent most of the day sleeping, I needed something to occupy my time. Through the window I spied a shop called ‘Yarn Etc. ’ “Perfect,” I thought, “I will start my knitting again”.
Yarn Etc. was a fabulous shop which sold wool of every colour and texture. I chose a knitting pattern for a baby’s hat and decided to knit Charlotte a purple one. I skipped back to Charlotte, excited that I had something relaxing to do with my day. All was going well with my knitting until I realised I’d missed a stitch and a hole had formed. From my previous knitting experience I know I’m not good or at all calm when I realise I have made a mistake. I panicked, felt hot sweat rising and literally ran back to the shop during Charlotte’s next nap to ask them to sort it for me. It was handy having this shop so close. I lost a few rows but nothing disastrous. The second time I made a mistake was when the shop was closed. This I found very annoying indeed but I asked one of the nurses and she said another nurse who was on that night might be able to help me. She did her best to sort out where I had messed up but as I am a perfectionist at times, I was slightly frustrated that you could still see where I had gone wrong. I shouldn’t have decided on a pattern which used such thin needles. However, knitting the hat did keep me busy for a very long time.
On Friday, the consultant came to say goodbye and tell me how pleased she was with Charlotte’s recovery. There was talk of the possibility of going home once Charlotte was stable on the amount of oxygen she had been on before the bronchiolitis.
By Saturday lunchtime, Charlotte had returned to 0.05 litres of oxygen. She had done it. In fact she had completely aced it and kept bouncing off 100%. The nurse kept coming in and turning it down. By Saturday teatime, Charlotte was breathing by herself and required no oxygen. Connor and I couldn’t actually believe it. We were so, so proud.
Charlotte spent the night not requiring any oxygen so that by Sunday morning the nurse and consultant weren’t too sure about what to do about discharging her on no oxygen. She had surprised everyone. It was decided that we could go home on no oxygen but we should put her back on the SATs monitor that night to check she was ok and didn’t tire. We were told it could take a few weeks for the cough to go.
It was a joyous feeling leaving the hospital that Sunday lunchtime. What a week.
That night the SATs monitor kept alarming so we decided to put Charlotte back on her oxygen. I didn’t mind. I was so proud of what this girl had achieved.
Charlotte modelling the hat I knitted
Saying goodbye to the oxygen
Charlotte remained on the oxygen for another week or so before her nurse suggested doing another trace to see if we could take her off during the day. Charlotte was starting to really hate the oxygen tubes and keeping them on her face was proving to be a bit of a nightmare.
The trace was returned and we were given the go ahead to take Charlotte off the oxygen during the day. How much easier my life suddenly became! It was still a pain putting the oxygen tubes on at night as Charlotte really didn’t like it and put up a good wriggling fight, often determined that the tape or tubes would come nowhere near her face or up her nose. A skill that had to be quickly mastered and involved fast hands and very wobbly, out of tune singing.
Charlotte spent a month on oxygen just at nighttime and then we did an oxygen trace with her on no oxygen at night. I waited in anticipation to hear if we could take her off completely and not have to face the battle of putting the oxygen tubes on at night.
On the 30th April, we were delighted to get the phone call to say Charlotte had been signed off the oxygen. It was the best news ever! However, they advised us to keep the oxygen in the house for a while longer, just in case.
On the 25th May, we happily said a final goodbye to the home oxygen.