Bringing the girls home was such a wonderful and worrying thing. I was so glad to have them at home and finally have our family all under the same roof but I was also terrified. We had spent the last 5 weeks with a team of drs and nurses and monitors telling us our babies were o.k, anything slightly wrong like their tempreture dropping was picked up on and dealt with where as now it was all down to us. How was I gunna know if their breathing was o.k whilst they were asleep or if their heart rates were a bit low? I had become reliant on those monitors to tell me my babies were o.k instead of my mothers instincts, what if I missed something or they stopped breathing in their sleep? (This is common in preemies the girls did it a lot and me and Jack have always done it).
We took the girls from the hospital to my mums where a select few people who knew about their discharge were there to meet them. It wasn’t until people told me how tiny they were I really noticed. They were weighed the night before and weighed 4lb 2oz and 4lb 6oz but to me they were so big compared to when they were born I hadn’t realised how small they were compared to other babies.
I was so pleased to walk back through my front door with all 4 of my kids at last. I had had everything ready for the girls since they were born as I occupied myself when I was at home by getting their stuff organised. I was advised by the hospital not to take them out in public for a couple of weeks unless essential because it was cold and they could catch something off someone else and end up back in so I hid with my babies. I didn’t leave the house only to go to the girls checkups and the kids were off school so I made the most of being able to have all my kids to myself, I felt selfish but I didn’t care, the last 5 weeks were hell for everyone and I wanted to make up for it.
As the weeks past we got in to a routine of housework and school runs and to be honest I found it quite easy as the girls were so settled and the hospital had put them into a solid 4 hourly routine. For the first few months they did sleep a lot but their consultant said it was normal as they have growing to catch up on. I think even if they had been the most unsettled babies ever I still wouldn’t have complained as I was just so glad to have them home. I wasn’t bothered about getting up 10 times a night because hearing them cry ment they were o.k and it was a chance for extra cuddles.
We had a good summer, they came to their first carnival with majorettes and were pushed along in procession behind us and we had our first house move to a bigger house in a different town, it was a big change but we were closer to my family and the hospital as well as supermarkets and better public transport.
The girls had lots of check ups at the hospital, they were and still are under a peadiatric constultant, a physiotherapist, dietican, optician, audiologist, speech therapist, neurologist, dermatologist and now a respritory nurse so we were up the hospital a lot but as outpatients and all their reports were glowing, they were doing so well until winter came.
We were warned that flu/r.s.v season could be hard and were told due to their under developed immune systems we should keep them out of the cold and away from sick people as a simple cold could make them poorly. Well flu season had barely begun before it happened. Hollie woke up one morning and was pale and limp, she wasn’t responding very much but every now and then she perked up for minute or 2 before flopping back down. Her breathing was heavy and rapid so I knew something was wrong. I debated calling an ambulance but I had 4 kids on my own how could I go? so I took the children to school and headed to the drs. Everyones oxygen saturation level should be around 100 but Hollies was at 89 and dropping, at the time I didn’t know what it ment but the dr told me she needed to go to the hospital and she didn’t want me leaving the surgery until someone got me to take me there. My mum and dad came and got me and we headed off.
When we got to the hospital we were taken to the assessment unit and once the nurse did Hollies observations put her on oxygen. Her sats still weren’t rising and she was getting less responsive so they turned it up as much as they could but still nothing. It all happened so quick, in the 20 minutes we were there it had gone from 1 nurse filling out forms to 3 nurses desperately trying to get Hollies sats up, it was so scary, I had no idea what was going on all I could see was the monitor showing Hollies sats in the 80s and slowly dropping despite the oxygen. What was wrong with her? She went to bed fine, no signs of illness, slept through as usual, what happened overnight? Suddenly we were being moved. I was on my own as mum had to leave and Tom was still trying to get out of work so i grabbed Georgia who was in her car seat and tried to keep up with the nurses pushing Hollie. We got to another private room that had lots more equipment in and had the signs and leaflets with HDU written on them. I realised this was bad, she was really poorly, for us to be in this room it is more than just a cold, my baby was really poorly and I couldn’t do a thing. A dr arrived a short while later and put canulas in both of her hands and she had a feeding tube as well as another type of oxygen. The whole time this was going on I was just sat in a chair cuddling Georgia who was soundo. I was completely useless, I couldn’t even get near Hollie to comfort her as there were so many drs and nurses round her. The nurses kept telling me as soon as they have stabilised and sorted her the dr would explain what was happening. I heard odd words like infection, menningitus, rsv etc but had no idea what they were on about, all I knew is that she is really poorly and that is not just a cold. What had I done? What had I exposed her to for her to get this ill this quick? I had tried so hard to keep them away from sick people, no one was allowed to lean in the pushchair and touch or breath on them, no one was allowed round if they had a cold or flu in the last week. I had tried so hard to protect them and I had failed. Hollie was trying so hard to breath she didn’t make a noise about being poked and prodded or having tubes and cannulas fitted, she just laid there occasionally opening her eyes and looking at the drs and closing them again. I was trying so hard to keep it together, holding Georgia as close as I could, trying to hold back the tears only to be failing miserably and silently crying all over the top of Georgias head. I was terrified and had no idea what was happening to my little girl.
After a while all the nurses and drs disappeared apart from one and he explained what was happening. He apologised for not keeping me more informed but stabilising Hollie was priority to start with. They weren’t sure what was wrong with her but had sent off blood cultures and done blood gases and other tests to find out. She was having to try extremely hard to breath and it was using up all her energy hence why she was so lethargic. He explained she was now on optiflow oxygen which is the first step of ventalation as wall oxygen wasn’t having any affect as she was trying too hard still. At the moment she was on the highest settings of the optiflow which was 10 litres and 80% and if this doesnt help her the next stage would be CPAP (what Georgia was on when she was born). She was now nil by mouth as a full tummy would put pressure on her lungs and make things more difficult so she was back on TPN fluid as well. They would be keeping a very close eye on her and seeing how she goes. He told us to expect to be in around 4-5 days at the very least so we might want to make arrangements for home. He reassured me none of this was my fault, it was a preemie thing and it is common for preemies to be hospitalised over their first winter as they just can’t handle the germs and bugs that come with it. He left us in the room and I just sat there staring over at the cot. What the hell had just happened in the last couple of hours? I was sat in my front room not long ago getting everyone ready for school, now I am sat with the girls in hospital with Hollie seriously poorly having a machine doing pretty much all her breathing for her. It felt so surreal, like I was watching it on t.v. Georgia had dozed off so I put her in her car seat and went over to Hollie and as soon as I saw her I broke down. She had tubes taped to her face going up her nose, cannulas in each hand with socks over the top of them so she didnt chew them and she had a sats monitor on. She was so pale she was almost transparent she looked so ill. She opened her eyes and looked at me, give me a little smile and closed her eyes again. I was a wreck, what had happened to my little banshee baby that can scream at a extrodinarily high pitched and then laugh her head off? I rested my hand on her tummy and leant over the cot and laid my head next to hers and sang twinkle twinkle as that was her favourite, she moved her head to look at me and briefly opened her eyes again. I carried on singing, stroking her hair until I could tell she was asleep instead of just resting, I covered her with a blanket and left her to sleep.
I rang everyone to fill them in and sorted out the arrangements for the other 3 children as I was going to stay with Hollie until she came home. We went through the rest of the day and night uneventful, nurses would come in and do her obs and check the machines and go off again. Hollie pretty much slept the rest of the day, it was like she had gone into hibernation so she could get better, which was a good thing because she would recover quicker like that than screaming her head off using up energy on that instead of breathing. Tom spent all of his time he was there sat next to her cot or cuddling her, I at least got to see her go through the transfomation she had made with the tubes and wires whereas the last time he saw her was last night when her and Georgia were crawling around the house causing trouble. He felt so guilty for not being here but he had to get out of work then sort everyone clothes and that out at home before coming. There was nothing he could’ve done anyway and all that would’ve happened was him getting stressed because the drs weren’t telling us anything and that would’ve added more stress and tension to the situation.
Hollie made a slow recovery over the next few days, having the optiflow reduced slowly, her oral feeds slowly reintroduced and increased and the course of I.V antibiotics were nearly finished. My baby was started to get better, by day 4 she was spending most of the day awake trying to pull the tubes out and using her front teeth to shred the bandages covering her cannulas. By day 5 she was back on wall oxygen but only a little and she was certainly back to her old self. We were moved on to the main ward as she was well enough to and she enjoyed watching the other children and got annoyed she couldnt join in as she was attatched to too much. On day 6 they took her oxygen off and monitored her to see if she needed it. Whilst she was awake she didn’t but as soon as she was asleep she did (which now we have been a few time we know is normal for her) so we had to stay another night to see how she went. She needed oxygen wafted round her from a tube but not up her nose so me and the nurses had our fingers crossed we would be discharged the next day.
The drs agreed she could go home and had put all this down to a chest infection and pneumonia and told us there was nothing more we could’ve done to prevent it and just to keep doing what we had been. We were finally going home after 7 days of being there, in 7 days Hollie had gone from seriously ill to back to her old self, I had felt about every emotion going and cried more than I ever had before but we were going home and wouldn’t have to go back, or so I thought. In total Hollie has had 9 hospital stays in this last year and Georgia 2, on the 2 occassions Georgia was in I had both of them in and poorly, one of them Hollie was as serious and just like I have described and the other they both had rotavirus and that was just messy more than scary lol.
Hollie has now been diagnosed with chronic lung disease and asthma and Georgia with asthma. Both of them suffer with hayfever and allergies all of which cause respritory reactions and have been the reason for a few of the stays. It is winter now and we have already had 2 admissions so far, we are ready and prepared this year, we know what to watch for, when to worry and when not to and we now know all the staff up on the peadatric ward and feel safe in their hands. When we go there now instead of a scary, clinical place, we are greeted like old friends by drs, nurses, cleaners and even other regular patients and their parents we have got to know. As much as I hate to say it that place has become another home for us, it feels like another home, I know it as well as I know my own house and when we are there we are treated like part of the furniture, which I like because it takes the scary, panicky element behind being there. I know why we are there and that it is serious but I also know we are in safe hands and they will do all they can to help my babies when I can’t.
Thanks for reading xxxx