http://www.onetruemedia.com/shared?p=a3df5b8c348cf63d59e90c&skin_id=601&utm_source=otm&utm_medium=text_url
Totally forgot I had made this montage over 2 yrs ago
About Me
- sara
- Ive decided to blog about our experience of having a premature baby and hopefully help others along the way.
Thursday, 18 October 2012
Tuesday, 22 November 2011
Long term problems
When we took Ellie home from hospital we expected some problems, we were told not to expect her to be the same as others her age so delayed in certain areas....I would say that up untill the age of 2 she was very delayed with walking, talking, social skills etc and it's only in the last 10 months that she seems to have taken off. Yes she is still behind with her speech and she see's SALT (speech and language) for this but she is trying and thats all we can ask of her. Her walking is great and she runs and jumps like any other toddler apart from she tires quickly, she hates her buggy, but we only get to the end of our road with her walking and she wants carried.
Her main issue and it's a life long issue is her bowels, due to the amount of bowel removed in surgery due to her getting NEC, 10-17cm of small intestine and over half of her large intestine, She has been diagnosed with short gut syndrome.
This means that for her she has frequent, loose, foul smelling stools. It may take longer with potty training too.
At nearly 3 years old she doesn't sleep well and is a very fussy eater, we are being seen by gastroenerology and at present are not sure if eating causes her pain/discomfort or if she just doesn't enjoy it.
We also have the added problem of choking, she tends to prefer soft food, ie yoghurt and fruits, this could be down to a scary moment about a year ago when she choked on an apple and we ended up requiring an ambulance and Ellie needing surgery to remove it!
Her main issue and it's a life long issue is her bowels, due to the amount of bowel removed in surgery due to her getting NEC, 10-17cm of small intestine and over half of her large intestine, She has been diagnosed with short gut syndrome.
This means that for her she has frequent, loose, foul smelling stools. It may take longer with potty training too.
At nearly 3 years old she doesn't sleep well and is a very fussy eater, we are being seen by gastroenerology and at present are not sure if eating causes her pain/discomfort or if she just doesn't enjoy it.
We also have the added problem of choking, she tends to prefer soft food, ie yoghurt and fruits, this could be down to a scary moment about a year ago when she choked on an apple and we ended up requiring an ambulance and Ellie needing surgery to remove it!
Tuesday, 27 September 2011
Our story
Friday 9th Jan 09, My husband had taken the day off work so we could go pram shopping, we made a day of it went for lunch and also to visit friends, Chose the pram we wanted and home to pick my son up from school. I sat down that evening after making dinner, putting my feet on the table and noticed they looked very swollen, Took my own blood pressure (I used to be a student nurse) and it was high (cant remember what it was) I waited half an hour and did it again....still the same so I called the labour ward I explained what was happening and I was told to go to another ward. Arrived at the hospital, explained to the nurse, she then went on to say id probably made a mistake as that was very high, I mentioned I thought it might be pre eclampsia and she said no it wont be that your only 25 weeks.
Well it was now gone 10pm so I was kept in had my BP taken...it was still high. The following morning i woke and looked in the mirror i was horrified i looked awful my whole face had swollen so swollen i didn’t recognise myself, i phoned Justin (husband) in tears saying i didn’t look myself and i was so embarrassed about looking like that. I had bloods taken and urine tests etc.
Justin arrived and then a consultant came and spoke to us.
We were told that yes i had pre eclampsia and that i would have to stay in hospital until my baby was born......i was only 25 weeks i said i cant stay in hospital for 15 weeks i have my son to look after, they then proceeded to tell me they would try and get me to 28 weeks....i was in shock i immediately said but my baby is too small. The consultant left and i just cried how could a baby born at that age survive, what would she look like and what would happen to her. A few hours later i asked to speak to a neonatal consultant and a couple of registrar’s came and spoke to us, they told me that if my baby was alive when she was born that she would be put in a plastic bag to keep her moist and warm and that she would need a machine to breath for her that she would have a lot of wires and be connected to lots of monitors. That she would be very small and her skin be very thin and almost translucent.
This was all too much to take in I’m sure they explained much more but I was in a daze i just wasn’t taking anything in.
Over the next few days i had daily scans and blood tests. My mum came up to look after my son.
Tuesday 13th still hanging on thinking i can hold on to her for a bit longer....until i was transferred down to the actual labour ward so they could keep a closer eye on me, i was put in a side room with 2 other women, had my BP taken and more bloods, Justin went home about 8.30pm, i was just settling down with a magazine when my consultant came through telling me they were going to transfer to Dundee they told me they were not taking babies under 30 weeks and that it would be best for me to be transferred and have my baby where there was a neonatal cot. I immediately called Justin to say i was being transferred so he came back to the hospital. About 10.00pm and the consultant came and told me that my blood tests had come back....they showed that my liver and my kidneys were failing and that they feared i might suffer a stroke or worse if they transferred me....i had to have my baby now! I started to shake, i was so scared i was 26 weeks pregnant i was not only scared for my baby but i was now scared for myself.
The anaesthetist came through and introduced himself he put a canulae in my hand and explained what they would do in theatre that i would be awake and they would give me a spinal block.
He went off to get set up and i franticly text my friends explaining what was happening, i phoned my mum and one of my friends called me, i was so scared.
11.30pm it was time....i was taken to theatre, i shook uncontrollably and cried, it took some time to get me ready as i was still so swollen they struggled to get lines into me. My husband was waiting in his scrubs in a side room, worrying what was happening, a nurse reassured him i was fine they were just having a few problems and then the neonatal Dr went to see him to explain that he and his team would be looking after ellie when she was born. I was ready, Justin came through and sat at my side, they made the cut and I felt some tugging and pulling, they took ellie out in her whole bag of waters, she was born at 1.05am weighing 1lb 5oz, nothing was said to me, I expected to hear a cry but nothing, i didn’t even know if my baby was alive. I asked if she was ok i was told she was alive and a girl (i knew this as paid for a private sexing scan) The neonatal Dr came and said they were taking Ellie to the neonatal unit. Suddenly i felt sick it was as if it wasn’t happening to me as if it was all a nightmare....machines started to beep. Justin looking at them concerned...my blood pressure was falling i was loosing a lot of blood, he was reassured i was ok and i was stitched up.
The next hours were a blur the morphine was making me very drowsy. Justin was allowed to go and see our daughter, he came back, he was very quiet and barely said a word, i asked how she was and he shook his head, the Dr's had told him the next 24 hrs were critical and they didn’t hold much hope.
I was given a photo i just couldn’t imagine how small she was and with all the morphine i was being given it didn’t feel real, i wasn’t able to see her as i had an arterial line in my neck monitoring my BP, i started refusing the morphine as i didn’t like the feeling and i needed to see my baby, 2 days later i had my lines removed and was wheeled round to see her, she was so tiny, her skin was almost see through and like tissue paper, covered in wires and lines in her arms and legs, i couldn’t see her mouth as she was ventilated and had tape around her mouth, i cried, i was told i could touch her but i was to frightened i was scared id either hurt her or pass germs to her, i don’t know what was going through my head...mostly fear and worry. Over the next few days i had visitors in to see me i was given get well soon cards but not one person gave me a congratulations card.....this really upset me i had just had a baby and yes she was very sick but she was still here and fighting. The nurses from the neonatal unit came up several evenings with photos of ellie and one of her hats and a tiny nappy.
Consultants kept us informed what was happening with her, how she was struggling to maintain her insulin levels, how she had several bleeds on the brain, she had low blood pressure and she was needing full ventilation support. On Tuesday 20th Ellie's consultant came and told me they were going to transfer her, they told me the nearest available cot was Yorkhill Glasgow, i asked to be discharged as i wanted to go down with her. That afternoon i went down to see her she was already in the travel incubator, i met the consultant and transport nurse who would be flying down with her, they told me they would look after her and they would call me when they arrived. I said my goodbyes to ellie in tears not wanting to leave her, i was terrified she wouldn’t survive the flight she was so fragile and small.
We went home to pack and spend some time with my son, we decided to wait for the phone call to say they had arrived before we left, 5 pm and we still hadn’t heard, my mind racing with panic that something had happened i called Yorkhill to see if she had arrived...she had they had just taken over from the Aberdeen transport team and getting her settled in. My phone rang, it was the transport nurse to say she behaved herself and they had arrived. We left, it was pouring with rain and dark, i had butterflies in my stomach the whole way, my husband put his foot down he was desperate to get to Glasgow and see our baby, i could hardly focus i could see the glare of car lights as we passed and i just stared at the windscreen wipers as the rain lashed down, we couldn’t sit in silence so the radio was on, we hardly said a word to each other, worrying if she was still going to be ok by the time we got there, we didn’t know Glasgow and we got lost, having to ask directions, we eventually arrived 9pm. It was very strange now being in another city in another hospital visiting our baby, she looked very different she had swollen up in the few hours i hadn’t seen her, the nurse was nice she told us what they were doing for her. we were given a room over in The Queen Mothers hospital, we hardly slept and in the morning back over to see Ellie. We talked to Ellie's consultant and we came home that evening, when we got home i called to see how she was, they told me they had to give her a drug to paralyse her as she was fighting the ventilator, they also started her blood pressure drugs again and given her some insulin.
The next day Thursday 22nd Jan me and Justin went to register Ellie's birth, we gave her the middle name Faith as we had faith she would fight hard.
For the next few days we drove down daily then i got the train down every other day...the travelling really started get to me, i was exhausted not only had i had a caesarean section i wasn’t able to rest and recover from i was thrown in to travelling back and forth to Glasgow and not only worrying about ellie but my son as well. I was eventually given a room at Ronald McDonald, which was a huge relief i decided i would stay mon to thurs come home on train on thurs stay night at home then justin would drive us back down on Friday we would stay wk end and home on sun then i would travel back to Glasgow on train on mon and we would repeat the cycle. It was a comfort knowing i could stay as long as i liked with ellie and then i just had to cross the road to my room.
Ellie ticked many boxes of problems that a premature baby can get, her problems were unable to breathe on own so needed fully ventilating, two grade 2 bleeds on the brain, trouble maintaining her BP, trouble regulating her insulin, Patent Ductus Arteriosus (PDA) a duct on the heart which hadn’t closed, required surgery to close. Necrotising Enterocolitis (NEC) which perforated and needed surgery to remove infected and dead bowel and colon, she was given a stoma. Bronchopulmonary displasia, Retinopathy of prematurity (ROP) grade 3 both eyes, both eyes required surgery. She also had numerous infections, septicaemia, gram negative septicaemia, and had dozens of blood transfusions.
On 4th Feb morning, (ellie was 3 weeks old) we had spent the night in Aberdeen and had just set off back down to Glasgow when my mobile rang I looked at the number it was Yorkhill’s, I started to panic, I answered the phone and it was a surgeon telling me Ellie was extremely unwell and they needed to do emergency surgery on her, she had NEC. I asked if they could wait until we arrived so I could see her before they took her to theatre but I was told she couldn’t wait and they were going to fit her in to the next available slot, I was also told that there may be a risk of her not having enough bowel left after they remove the dead and infected bowel and if this was the case, they would have to close her up and make her comfortable and that there would be nothing else they could do for her. That was a drive like the first night we drove down, we were so desperate to get to her, I called and spoke to the nurse looking after her I asked her if she would hold her hand and tell her mummy and daddy loves her so much, would we see her before they took her to theatre would she survive surgery, would she have enough bowel left. We arrived and managed to get parked close to the hospital, we ran up the stairs and up to the ward, hoping we had made it in time…..we had just, she was just getting ready to be wheeled round to theatre, we both stroked her hand and told her we loved her I was so scared that it may be the last time I saw her alive. We were taken to a small room where we were told we could wait, the next 2 hours felt like a life time, my stomach was in knots I felt so scared, every time there was a knock at the door or the door opened we feared the worst. We had a nurse come through after 2 hours and tell us ellie was on her way back and that the surgeon would come and speak to us, a few moments later we heard the beeping of monitors and doors opening it was our baby being brought back to the ward, the surgeon came and told us all went as well as could be expected, she had to remove a large part of ellie’s bowel and colon and that she had given ellie a stoma. We were told that the next 48 hours would be critical. She had a rocky night but was fighting, over the next few days ellie was starting to recover when we had another shock we were told she needed an operation to close her PDA , just six days after her emergency surgery for NEC she had another operation for her PDA, she was in theatre for and hour and 25 mins this time and all went smoothly, she came back heavily sedated and with a chest drain.
When the dr’s and nurses tell you that life with a baby in NICU is a rollercoaster you don’t realise how very true that is, you can have several stable days and then bang you get sent crashing back with a infection or other. The first few months were always 1 step forward and 2 steps back, never knowing if those steps back would be the last. As Ellie started putting on weight and maturing the backwards steps got less but when something did go wrong it was a shock as you could go for a long time thinking things were going well.
One of big backwards steps happened on 19th April we had left Glasgow to come home for the night, I had been home about an hour when I got a call telling me ellie had been desaturating and stopped breathing she had to be fully ventilated again, we had another frantic drive back to Glasgow, when we saw her back ventilated it was heartbreaking she had been doing so well we didn’t think we would be having anymore major setbacks, it turns out she got an infection from one of her lines, 4 days later she was off the ventilator and recovering well fro her infection.
Ellie’s last op 11th June, this was to reverse her stoma, we had been waiting for this op this was the one that if all went well we would be taking her home but also the thought of her going through another big op and being told she would probably come back ventilated scared me, we went over to the hospital early so I could spend time with Ellie and do her cares, we were told Ellie was 2nd on list and surgeon came and explained what her was going to do, at 10.20am we carried Ellie down to theatre, we gave her a big kiss and cuddle and I left in tears, we tried to keep busy so went for a walk, back to our room and watched TV, at 1pm we went back over to the hospital to wait, 1.30 pm and our baby came back from theatre, the surgeon came and told us all went well, no problems and that she had come back without the ventilator, I was so happy. We were told that they needed Ellie to poo so that they knew things were working properly and to get her back up to full feeds then she could come home, when I asked how long they thought this might take I was told about 2 weeks, I couldn’t believe it we could finally see light at the end of a very long dark tunnel.
The very next day Ellie did a poo, and they restarted her feeds very slowly, gradually day by day they increased, all her monitors and wires were removed and 3 weeks later we were told we could take her home, I thought that day would never come and it was sprung on us, on the Friday we were told we would probably be taking her home Monday or Tuesday, that was great we rang our family and told everyone the good news, well on Saturday 4th July, we were told we could take ellie out….the first time I had ever left the hospital with her, it felt strange almost like I was stealing her. We had a walk over to our room and then the museum, we had her out for a couple of hours but had to take her back for a feed, when we got back I was told you can take her home tomorrow, I was asked if I wanted to room in with her for the night, which I did, it was all very surreal, I was shown how to give all her medication, and I had her all to myself for the first time in 6 months, it was great, the following morning Justin and my son came over, we were given a bag of ellie’s medicines, milk etc, I had so many people I wanted to say goodbye to but because it happened so quickly I wasn’t able to, it all felt very rushed, we said good bye to the dr’s and nurses on shift and to the other mums I had made friends with, I couldn’t thank them enough and I was crying as I left, happy to be taking my baby home at last but sad as I had got to know all the staff and I felt like I was leaving my comfort zone.
The first night home was amazing, having her in her moses basket next to us was great, I finally felt like she was ours that I was her mum and that she was ours to keep.
I’m so proud of her she fought so hard and she always has a smile on her face, she loves her big brother and has the biggest smile for him when we pick him up from school.
We are very lucky as there are so many babies that don’t make it home and we treasure everyday.
Well it was now gone 10pm so I was kept in had my BP taken...it was still high. The following morning i woke and looked in the mirror i was horrified i looked awful my whole face had swollen so swollen i didn’t recognise myself, i phoned Justin (husband) in tears saying i didn’t look myself and i was so embarrassed about looking like that. I had bloods taken and urine tests etc.
Justin arrived and then a consultant came and spoke to us.
We were told that yes i had pre eclampsia and that i would have to stay in hospital until my baby was born......i was only 25 weeks i said i cant stay in hospital for 15 weeks i have my son to look after, they then proceeded to tell me they would try and get me to 28 weeks....i was in shock i immediately said but my baby is too small. The consultant left and i just cried how could a baby born at that age survive, what would she look like and what would happen to her. A few hours later i asked to speak to a neonatal consultant and a couple of registrar’s came and spoke to us, they told me that if my baby was alive when she was born that she would be put in a plastic bag to keep her moist and warm and that she would need a machine to breath for her that she would have a lot of wires and be connected to lots of monitors. That she would be very small and her skin be very thin and almost translucent.
This was all too much to take in I’m sure they explained much more but I was in a daze i just wasn’t taking anything in.
Over the next few days i had daily scans and blood tests. My mum came up to look after my son.
Tuesday 13th still hanging on thinking i can hold on to her for a bit longer....until i was transferred down to the actual labour ward so they could keep a closer eye on me, i was put in a side room with 2 other women, had my BP taken and more bloods, Justin went home about 8.30pm, i was just settling down with a magazine when my consultant came through telling me they were going to transfer to Dundee they told me they were not taking babies under 30 weeks and that it would be best for me to be transferred and have my baby where there was a neonatal cot. I immediately called Justin to say i was being transferred so he came back to the hospital. About 10.00pm and the consultant came and told me that my blood tests had come back....they showed that my liver and my kidneys were failing and that they feared i might suffer a stroke or worse if they transferred me....i had to have my baby now! I started to shake, i was so scared i was 26 weeks pregnant i was not only scared for my baby but i was now scared for myself.
The anaesthetist came through and introduced himself he put a canulae in my hand and explained what they would do in theatre that i would be awake and they would give me a spinal block.
He went off to get set up and i franticly text my friends explaining what was happening, i phoned my mum and one of my friends called me, i was so scared.
11.30pm it was time....i was taken to theatre, i shook uncontrollably and cried, it took some time to get me ready as i was still so swollen they struggled to get lines into me. My husband was waiting in his scrubs in a side room, worrying what was happening, a nurse reassured him i was fine they were just having a few problems and then the neonatal Dr went to see him to explain that he and his team would be looking after ellie when she was born. I was ready, Justin came through and sat at my side, they made the cut and I felt some tugging and pulling, they took ellie out in her whole bag of waters, she was born at 1.05am weighing 1lb 5oz, nothing was said to me, I expected to hear a cry but nothing, i didn’t even know if my baby was alive. I asked if she was ok i was told she was alive and a girl (i knew this as paid for a private sexing scan) The neonatal Dr came and said they were taking Ellie to the neonatal unit. Suddenly i felt sick it was as if it wasn’t happening to me as if it was all a nightmare....machines started to beep. Justin looking at them concerned...my blood pressure was falling i was loosing a lot of blood, he was reassured i was ok and i was stitched up.
The next hours were a blur the morphine was making me very drowsy. Justin was allowed to go and see our daughter, he came back, he was very quiet and barely said a word, i asked how she was and he shook his head, the Dr's had told him the next 24 hrs were critical and they didn’t hold much hope.
I was given a photo i just couldn’t imagine how small she was and with all the morphine i was being given it didn’t feel real, i wasn’t able to see her as i had an arterial line in my neck monitoring my BP, i started refusing the morphine as i didn’t like the feeling and i needed to see my baby, 2 days later i had my lines removed and was wheeled round to see her, she was so tiny, her skin was almost see through and like tissue paper, covered in wires and lines in her arms and legs, i couldn’t see her mouth as she was ventilated and had tape around her mouth, i cried, i was told i could touch her but i was to frightened i was scared id either hurt her or pass germs to her, i don’t know what was going through my head...mostly fear and worry. Over the next few days i had visitors in to see me i was given get well soon cards but not one person gave me a congratulations card.....this really upset me i had just had a baby and yes she was very sick but she was still here and fighting. The nurses from the neonatal unit came up several evenings with photos of ellie and one of her hats and a tiny nappy.
Consultants kept us informed what was happening with her, how she was struggling to maintain her insulin levels, how she had several bleeds on the brain, she had low blood pressure and she was needing full ventilation support. On Tuesday 20th Ellie's consultant came and told me they were going to transfer her, they told me the nearest available cot was Yorkhill Glasgow, i asked to be discharged as i wanted to go down with her. That afternoon i went down to see her she was already in the travel incubator, i met the consultant and transport nurse who would be flying down with her, they told me they would look after her and they would call me when they arrived. I said my goodbyes to ellie in tears not wanting to leave her, i was terrified she wouldn’t survive the flight she was so fragile and small.
We went home to pack and spend some time with my son, we decided to wait for the phone call to say they had arrived before we left, 5 pm and we still hadn’t heard, my mind racing with panic that something had happened i called Yorkhill to see if she had arrived...she had they had just taken over from the Aberdeen transport team and getting her settled in. My phone rang, it was the transport nurse to say she behaved herself and they had arrived. We left, it was pouring with rain and dark, i had butterflies in my stomach the whole way, my husband put his foot down he was desperate to get to Glasgow and see our baby, i could hardly focus i could see the glare of car lights as we passed and i just stared at the windscreen wipers as the rain lashed down, we couldn’t sit in silence so the radio was on, we hardly said a word to each other, worrying if she was still going to be ok by the time we got there, we didn’t know Glasgow and we got lost, having to ask directions, we eventually arrived 9pm. It was very strange now being in another city in another hospital visiting our baby, she looked very different she had swollen up in the few hours i hadn’t seen her, the nurse was nice she told us what they were doing for her. we were given a room over in The Queen Mothers hospital, we hardly slept and in the morning back over to see Ellie. We talked to Ellie's consultant and we came home that evening, when we got home i called to see how she was, they told me they had to give her a drug to paralyse her as she was fighting the ventilator, they also started her blood pressure drugs again and given her some insulin.
The next day Thursday 22nd Jan me and Justin went to register Ellie's birth, we gave her the middle name Faith as we had faith she would fight hard.
For the next few days we drove down daily then i got the train down every other day...the travelling really started get to me, i was exhausted not only had i had a caesarean section i wasn’t able to rest and recover from i was thrown in to travelling back and forth to Glasgow and not only worrying about ellie but my son as well. I was eventually given a room at Ronald McDonald, which was a huge relief i decided i would stay mon to thurs come home on train on thurs stay night at home then justin would drive us back down on Friday we would stay wk end and home on sun then i would travel back to Glasgow on train on mon and we would repeat the cycle. It was a comfort knowing i could stay as long as i liked with ellie and then i just had to cross the road to my room.
Ellie ticked many boxes of problems that a premature baby can get, her problems were unable to breathe on own so needed fully ventilating, two grade 2 bleeds on the brain, trouble maintaining her BP, trouble regulating her insulin, Patent Ductus Arteriosus (PDA) a duct on the heart which hadn’t closed, required surgery to close. Necrotising Enterocolitis (NEC) which perforated and needed surgery to remove infected and dead bowel and colon, she was given a stoma. Bronchopulmonary displasia, Retinopathy of prematurity (ROP) grade 3 both eyes, both eyes required surgery. She also had numerous infections, septicaemia, gram negative septicaemia, and had dozens of blood transfusions.
On 4th Feb morning, (ellie was 3 weeks old) we had spent the night in Aberdeen and had just set off back down to Glasgow when my mobile rang I looked at the number it was Yorkhill’s, I started to panic, I answered the phone and it was a surgeon telling me Ellie was extremely unwell and they needed to do emergency surgery on her, she had NEC. I asked if they could wait until we arrived so I could see her before they took her to theatre but I was told she couldn’t wait and they were going to fit her in to the next available slot, I was also told that there may be a risk of her not having enough bowel left after they remove the dead and infected bowel and if this was the case, they would have to close her up and make her comfortable and that there would be nothing else they could do for her. That was a drive like the first night we drove down, we were so desperate to get to her, I called and spoke to the nurse looking after her I asked her if she would hold her hand and tell her mummy and daddy loves her so much, would we see her before they took her to theatre would she survive surgery, would she have enough bowel left. We arrived and managed to get parked close to the hospital, we ran up the stairs and up to the ward, hoping we had made it in time…..we had just, she was just getting ready to be wheeled round to theatre, we both stroked her hand and told her we loved her I was so scared that it may be the last time I saw her alive. We were taken to a small room where we were told we could wait, the next 2 hours felt like a life time, my stomach was in knots I felt so scared, every time there was a knock at the door or the door opened we feared the worst. We had a nurse come through after 2 hours and tell us ellie was on her way back and that the surgeon would come and speak to us, a few moments later we heard the beeping of monitors and doors opening it was our baby being brought back to the ward, the surgeon came and told us all went as well as could be expected, she had to remove a large part of ellie’s bowel and colon and that she had given ellie a stoma. We were told that the next 48 hours would be critical. She had a rocky night but was fighting, over the next few days ellie was starting to recover when we had another shock we were told she needed an operation to close her PDA , just six days after her emergency surgery for NEC she had another operation for her PDA, she was in theatre for and hour and 25 mins this time and all went smoothly, she came back heavily sedated and with a chest drain.
When the dr’s and nurses tell you that life with a baby in NICU is a rollercoaster you don’t realise how very true that is, you can have several stable days and then bang you get sent crashing back with a infection or other. The first few months were always 1 step forward and 2 steps back, never knowing if those steps back would be the last. As Ellie started putting on weight and maturing the backwards steps got less but when something did go wrong it was a shock as you could go for a long time thinking things were going well.
One of big backwards steps happened on 19th April we had left Glasgow to come home for the night, I had been home about an hour when I got a call telling me ellie had been desaturating and stopped breathing she had to be fully ventilated again, we had another frantic drive back to Glasgow, when we saw her back ventilated it was heartbreaking she had been doing so well we didn’t think we would be having anymore major setbacks, it turns out she got an infection from one of her lines, 4 days later she was off the ventilator and recovering well fro her infection.
Ellie’s last op 11th June, this was to reverse her stoma, we had been waiting for this op this was the one that if all went well we would be taking her home but also the thought of her going through another big op and being told she would probably come back ventilated scared me, we went over to the hospital early so I could spend time with Ellie and do her cares, we were told Ellie was 2nd on list and surgeon came and explained what her was going to do, at 10.20am we carried Ellie down to theatre, we gave her a big kiss and cuddle and I left in tears, we tried to keep busy so went for a walk, back to our room and watched TV, at 1pm we went back over to the hospital to wait, 1.30 pm and our baby came back from theatre, the surgeon came and told us all went well, no problems and that she had come back without the ventilator, I was so happy. We were told that they needed Ellie to poo so that they knew things were working properly and to get her back up to full feeds then she could come home, when I asked how long they thought this might take I was told about 2 weeks, I couldn’t believe it we could finally see light at the end of a very long dark tunnel.
The very next day Ellie did a poo, and they restarted her feeds very slowly, gradually day by day they increased, all her monitors and wires were removed and 3 weeks later we were told we could take her home, I thought that day would never come and it was sprung on us, on the Friday we were told we would probably be taking her home Monday or Tuesday, that was great we rang our family and told everyone the good news, well on Saturday 4th July, we were told we could take ellie out….the first time I had ever left the hospital with her, it felt strange almost like I was stealing her. We had a walk over to our room and then the museum, we had her out for a couple of hours but had to take her back for a feed, when we got back I was told you can take her home tomorrow, I was asked if I wanted to room in with her for the night, which I did, it was all very surreal, I was shown how to give all her medication, and I had her all to myself for the first time in 6 months, it was great, the following morning Justin and my son came over, we were given a bag of ellie’s medicines, milk etc, I had so many people I wanted to say goodbye to but because it happened so quickly I wasn’t able to, it all felt very rushed, we said good bye to the dr’s and nurses on shift and to the other mums I had made friends with, I couldn’t thank them enough and I was crying as I left, happy to be taking my baby home at last but sad as I had got to know all the staff and I felt like I was leaving my comfort zone.
The first night home was amazing, having her in her moses basket next to us was great, I finally felt like she was ours that I was her mum and that she was ours to keep.
I’m so proud of her she fought so hard and she always has a smile on her face, she loves her big brother and has the biggest smile for him when we pick him up from school.
We are very lucky as there are so many babies that don’t make it home and we treasure everyday.
Monday, 6 June 2011
A Girl
We "knew" we were expecting a girl and had already affectionately named my bump "Ellie belly" so when our friend offered to pay for a sexing scan for a Christmas present we couldn't wait to have it confirmed.
I was 22 weeks when we went to find out, lying there on the bed looking at the screen my heart sank as i saw 2 white dots I looked at my husband and his face dropped, he thought it too and said to the sonographer its a boy isn't it? She looked at us and said no im pretty certain your expecting a girl and the 2 dots you see are her ovaries.
We were right we were expecting a girl and what a lovely shaped head she has from the scan photo, we were overjoyed, my son however was not and was very disappointed to learn he would be having a sister and not a brother.
Little did we know that in another 3 weeks time i would be in hospital and Ellie would be making an appearance sooner rather than later!
I was 22 weeks when we went to find out, lying there on the bed looking at the screen my heart sank as i saw 2 white dots I looked at my husband and his face dropped, he thought it too and said to the sonographer its a boy isn't it? She looked at us and said no im pretty certain your expecting a girl and the 2 dots you see are her ovaries.
We were right we were expecting a girl and what a lovely shaped head she has from the scan photo, we were overjoyed, my son however was not and was very disappointed to learn he would be having a sister and not a brother.
Little did we know that in another 3 weeks time i would be in hospital and Ellie would be making an appearance sooner rather than later!
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