Being a mum with bipolar

Posts tagged ‘chroniclungdisease’

Twin life

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

Our second home

Hospital stays, nobody likes them but sometimes they are a must. Some people are only in once or twice in their lives whereas some people spend a lot more time in there, we are the latter.

Before the girls were born we had only had 4 visits to hospital, 2 for the births of Skie and Jack, 1 because Skie wasn’t able to eat or drink without bringing it back up and the other when Jack burnt his hand. So we weren’t familar with our hospital, it was a strange clinical place that we didn’t didn’t know our way round and was full of strangers. Well all that changed dramatically when the girls were born.

I had the girls naturally at 30 weeks. After they were delivered they were handed over to the nicu team and once they were stabilised they were moved down to the nicu. I didn’t require any care after delivery so I was taken back down to the ward to have a shower and get changed. Within 20 minutes of delivering Georgia I was dressed and showered wanting to go see them but the midwives wanted to have a cup of tea and some toast first. I finished that and was promptly sick. The midwife came to check me over and couldn’t believe how quick I was recovering. I was walking round the place like I had the babes a week ago not an hour ago. After she checked me she rang down to the nicu who said they needed more time to sort the girls before we went down so me and the midwives converted the weights the dr gave us as they were in kgs and I didnt know what it was. Hollie was 2lb 15oz and Georgia 3lb 1oz.

We make our way to the nicu (after I had to persuade the midwife I didnt need a wheelchair) not knowing what to expect and we never got our tour or our chat to the nicu dr as everything happened too quick. We buzzed in and walked through the doors. Unlike every other part of the hospital it was so quiet and calm. A nurse greeted us and showed us where to wash and sanitise our hands as we entered a dimly lit room with several nurses in it and six incubators, 3 each side of the room. It suddenly dawned on me Hollie was over 2 hours old and I wouldn’t be able to tell which baby she was to look at. I panicked, what if I go to the wrong baby? Are they gunna show me where they are? I feel it rise and I just wanna run and hide but the urge to wanna see my babies take over, I take a deep breath, push the tears back and follow the nurse who was waiting for us. Hollie is right at the end near the door and Georgia is at the opposite end of the same row with a baby inbetween. I go to Hollie first as she is closer and her size takes my breath away. So tiny, yet perfect in every way. She has lots of tubes and wires and is wearing nothing but the tiniest nappy and a knitted hat, she looks so peaceful and laying so still she looks like one of Skies dolls. I reach out to touch her only for my hand to be met with the plastic incubator, it dawns on me. I haven’t even touched or kissed them yet, most babies at 2 hours old have had cuddles from mummy and daddy and lots of kisses too, my girls haven’t had any, I haven’t even touched them or felt their hair or their soft skin, I didn’t even put their hats or nappies on. I go over to Georgia to find she has a bright U.V light shining on her and they’ve put some eye protectors on her. She has also got at extra tube that Hollie didn’t have that goes up her nose and judging by the noise is providing her with air. I just stand with my hand on the incubator, face lent against it staring at her. I want to cry so much but I refuse to infront of them and everyone else, I will be strong for them I am going fight just like they are. Just as I am pushing it all down my parents arrived to see the girls. As its not visiting hours they can’t stop long but Dad catches pictures for me as we didnt get chance before and then we go off for a drink and we fill them in on all the details, make a few phones calls then I announce it on facebook where we get lots of support from everyone which I draw strength from.

When we go back in a dr sits down and explains everything to us. The 3 sticky pads on their chests, the drips, feeding tubes and the monitors. He explains the light are because Georgia is Jaundice and this is quite common so to expect them both to be on and off them for their stay. The tube Georgia has is CPAP which is helping her breath as she was having issues but she will be slowly weaned off it. He also told us that we shouldn’t expect them home until their due date at least. They were born on the 14th of Janurary, their due date the 26th of March so we had a long journey ahead of us.

We spent the night in there only leaving for a drink or cigarette, wondering the halls of the dark quiet hospital trying to absorb it all, the whole time Tom telling me how proud and impressed he is of me because of what I have just done for us and our family as much as I appreciated it all, I could think was is this my fault? Did I do something wrong?

After spending hours wondering back and forth watching them both sleeping I give in to Tom and the nurses and go and get some sleep on the ward. It was so hard hearing other mums sorting out their babies, listening to the cries, one baby just doesn’t settle and carries on for a while, then the mum comes walking across the ward and asks a midwife to take him as she can’t handle it and needs to sleep. What I wouldn’t have given to have my babies next to me crying, the whole time I was in the nicu neither one had made a sound and had barely moved. I would have loved to have them next to me and to drift off to sleep watching them. I felt awful for feeling like it but I just wanted to shout at the women and tell her she should think herself lucky her baby is up here with her but I just roll over and try to sleep.

The next day the midwives agree to discharge me as I just couldn’t cope with the idea of spending another night waking up to other peoples babies whilst mine are no where near me. I go down to see them as soon as I am sorted. When I get there Tom is already there, it turns out despite the nurses pleas he hasn’t left the girls all night. I feel guilty that he has been here all night whilst I have been asleep upstairs although I’m not sure I would’ve exactly called it sleep.

We are told about ward rounds and how they work and what happens so we wait to speak to a dr. He explains the girls are doing well and they are hoping to start giving them small amounts of milk as well as their TPN fluid in the hopes we can gradually reduce their TPN and increase their feeds to milk only. He also explains they may need to put a long line in (a tube that goes up their arm and the tip sits just under their shoulder) just incase they should need it. He also said they are reducing Georgias CPAP so all round good news.

As the days went on Georgia came off CPAP but also needed a long line fitted as she wasn’t tolerating milk feeds as well as Hollie and they were awaiting blood cultures to check her for an infection. Luckily all came back clear. Hollie did really well and was on full milk feeds 2 hourly quite quickly. Georgia however kept aspirating into her tube so they had to keep reducing and trying again next feed. Eventually, both the girls come out of incubators and in cots like u are given when your baby is born on the ward. I was finally starting to feel like a mum to them. We were changing bums, top to tailing them, learnt how to tube feed them and could cuddle them pretty much anytime we liked. We now knew what the monitors ment, what was good and bad, when to worry about the beeps and when not to, we knew the nurses better, felt more at ease, it really was beginning to feel like a second home which is bad in a sense as its a hospital but also good because if the nurses and other staff hadn’t have been so friendly and understanding it never would’ve felt like that. Once the girls had proven they could keep their own tempratures stable in their cots we were given one they could share. I was so pleased my girlies could share a cot just like I planned for them at home, I was able to dress them although everything, even prem baby clothes drowned them.

By week 4 we were pretty much doing everything we would do at home, all monitors, lines and tubes were gone excepting their feeding their tubes which they were barely using now. Their final hurdles were full bottle feeds and the car seat challenge. The bottle feeds would come as they got used to sucking and the car seat challenge was simply for them to sit in their car seats for an hour with a monitor on. If they didn’t set the alarms off they passed, if they did we would have to wait 24 hours to try again but being the little fighters they are they took on the challenge and passed first time.

The day before their discharge day I got a phone call from their nurse asking if we could come in before the drs changed over as he wants to speak with us, I panicked, whats happened? Aren’t they allowed home? But they nurse kept reassuring me nothing was wrong and not to worry but I did the opposite. I rang Tom who was at work and he left straight away. We got to the hospital and the nurse called the dr. When he came in the nurse shut the door so no one else could come in. I was terrified what was he going to say? The girls were fine yesterday, the drs keep telling us the have exceeded expectations and done so well so whats changed in 24 hours? He stands infront of us and explains that as the girls were born before 32 weeks they have been having regular ultrasounds on the heads to check the blood vessels in their brains have been sealing properly and there isn’t any bleeding, but during their last one they discovered Georgia has a small cist on the part of her brain that controls development. He didn’t know if it was going to affect her, wether it would get bigger or smaller it was just something they had to monitor and hope it shrinks and goes away just as it appeared. He told us she could still come home as they couldn’t remove it and she would have to come back for checks and if we noticed her head change shape or get big rapidly to come to hospital. Our world was now full of what ifs. What if it gets bigger, what if it does affect her development and she can’t walk or talk or ever play with her sister? We stay with them for the rest of the evening then go to my parents to explain what was going on. My mum reassured and reminded me how far they had already come so why should anything change now. I felt so much better and was now just looking forward to bringing my babies home.

Thanks for reading xxx