Silent Sunday

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Support networks - Danielle Humphrey, I Heart My Preemie

When I had Babyzoid 3 months early I forgot myself.  I decided I had to be strong for my daughter because she needed me.  Actually, there was no decision to make - it was autopilot.  I had my daughter, she was fragile and poorly, and she needed me.  Needed me to be strong, needed me to be there for her.  

I put aside all thoughts of self, all thoughts of me as a partner to her Daddy, all thoughts of anything.  Every waking moment would now be consumed with willing my daughter to be okay, to fight, and to not succumb to all the obstacles in her path.  Caring for her in the little ways I was eventually allowed.  Doing anything I could to show this tiny little creature that although she was in a plastic box, I was her mummy.  I was the one who carried her for 6 months inside me, talking to her about what we would do when she was born.  Making her listen to the bands I like (she always seemed to have an issue with Bob Dylan's harmonica!) and planning our family life together.  But it came down to me and her, ourr own little bubble in a corner of the NICU (our own room once she contracted the RSV infection at 4 or 5 days old).  I was nothing else now, life was on hold.  I was just her mummy.

To say I had no support would be wrong.  My partner is and always has been wonderfully supportive and my family travelled down from the Lincolnshire to be with us.  But I was in a shock of sorts.  I wouldn't let anyone support me emotionally.  All I wanted to do was relive the birth, even though I would soon refuse to until the traumatic experience forced its way upon me in the form of Post Traumatic Stress Disorder (PTSD).  Friends didn't always know what to say or do.  I had some messages of concern, some good friends who I knew were there and kept in regular contact, checking on me and asking for updates (thank you Caroline) and I had some who didn't say anything at all.  If I had done the healthy thing and reached out for support then in some quarters I would have been sorely disappointed.  When I did allow my guard to slip and replied to one friend of many years that my daughter was early and had bleeds on the brain, I got no reply.  

I guess it wasn't necessarily her fault, she didn't know what to say or didn't grasp the seriousness of it.  She certainly couldn't understand what I was going through.  No one could.  Not unless they had been through it themselves.

And that is where I wish I had sought online support.  I don't know why I didn't, after all I had even met my now-husband on an Internet music forum.  But it didn't occur to me.  I guess because I was so tunnel-vision.  So desperate to be with my daughter around the clock.  But I'm glad to see others who are making the journey we made reaching out to others who are going through or have been through the same.  And that brings me to a very special lady who started a Facebook group called "I <3 My Preemie" - a place where preemie mums (and dads!) can go to vent, ask advice (non-medical, of course) or just know that they are not alone in this rollercoaster of parenting a premature baby.

So here is Danielle's story, in her own words:

Danielle Humphrey of I <3 my preemie

My daughter Amelia was born at at 30 weeks on the 18th April 2011 weighing 3lb 9oz.

Okay so I will for the first time since I have had her tell you why I had her so early. It started on friday 15th April I was at my sister in laws house for the day and I was in quite a bit of discomfort. I couldn't sit, stand, lie down all I could do was walk around. Almost felt like contractions. My husband drove me home (1.30hr drive from where we live). By the time we got home I was in considerable pain, sharp stabbing pains more so when Amelia was moving around ( and she was a very active baby). I called my friend to come over and watch the 3 boys and my husband took me to the labour ward. They hooked me up to the machine and it was showing that I was having contractions, but they did not feel like that. I was then scanned and was told that I had grade 4 placenta preavia and the pain was caused my amelia being breach and kicking the placenta. They gave me some strong pain relief and my husband was told to go home and wait for a phone call. Well about 15 minutes after he left the contractions got a lot stronger and they were every 8 minutes. They couldn't do an internal examination as it could have cause me to start bleeding.

What I am about to tell you next is from what I have been told by my husband, family and friends who came to visit as after the friday evening I do not remember a thing. This was due to the 48hrs of being on constant gas and air and the fact that my brain has blocked it all out. Apparently its a coping mechanism.

So my best friend came up saturday morning and all through the night they had been giving me medication to stop the contractions but they were not working, my contractions were getting stronger and the stabbing pains were worse. They had put me on gas and air at this point. The consultant was worried about the placenta preavia and decided the hospital where I was at would not be able to cope if i needed to deliver early as I was a 'ticking time bomb' and because of the placenta would have a major bleed. So my husband arrived and I was transferred by ambulance blue lights and sirens to another hospital about 45 minutes away. When we arrived I was taken straight in for a MRI scan but me being claustaphobic  screamed to get out. I continued with the tablets to try and stop the contractions and yet they were still not working, they gave me an injection of steroids for Amelia's lungs and continued with the gas and air. 

The new hospital refused to do an internal also as they were worried about causing a huge bleed. Sunday was the same, the pain by this point was so bad they put a morphine drip in to my hand and i was pressing it every 6 minutes!! I was pacing around couldnt lie down again or sit. As it was sunday there were no major consultants around so they had to leave me to see 'what would happen' much to my husbands anger and frustration. Monday the 18th april arrives and I am first to be seen by 3 yes 3 consultants!! All 3 took me in to have an ultrasound and my goodness did things get serious then!! I had a major internal bleed going on!!! Not only did I have grade 4 placenta preavia I had a placental abruption and  placenta acreatia ( where the placenta starts to push out of the womb) and was starting to attach to my bladder. The only reason I hadn't bled out was because the placenta was in the way holding it in! So from then it was all systems go, they needed to take me in to theatre asap. 

Now luckily for me there was a Specialist consultant in that day that offered to put stent balloons in to my femoral arteries so in theatre they could stop the blood flow to the womb, apparently i was awake when they put them in, but thank goodness I really cant remember it, my husband said it was extremely traumatic for him let alone me! They took me down to theatre after this and they had about 15 dr's in the room for me and about 8 for Amelia. My husband was allowed in with me til they knocked me out but i don't remember. 

It took them about 5 min to get Amelia out and she was born breathing and apparently even let out a little cry! She went straight to the neonatal unit. I, however, was in theatre for 4 1/2 hours, I managed to loose over 3 litres of blood. At one point during the surgery they went up and told my husband to prepare for the worst as they weren't sure If i was going to make it. They even asked him if there was anyone that could be there for him. If they hadn't put the balloon stents in I would not be sitting here typing you this.

In the meantime Terry was allowed to go and see Amelia. She was doing very well but they did have to put her on a ventilator.

After surgery I was taken to Intensive care where they watched me closely for 36hours. I had the stents removed with gas and air ( that i sort of remember!)  and had the central line removed from my neck!

MY NICU EXPERIENCE
So back to Amelia. I didn't get to see her for nearly 2 days. The first time i saw her I completely panicked. I was in the neonatal unit for not even 3 minutes before I asked to leave, the shock of how tiny she was and the alarms and how hot it was was too much for me. I went back an hour later and held her for the first time. She was breathing all by herself and was even having 2mils of my milk through an NG tube. It was the most amazing and heartbreaking time for me. I was terrified of her and loosing her that i didn't want to bond. The staff were fantastic and very gentle with me and there was no pressure to hold her or touch her and they were happy for me to sit there and just stare at her for hours on end, I even sat in the middle of the night just looking at her and singing quietly to her ( I was the only parent in there at that time!)

At 4 days old Amelia was transferred back to my local hospital where they were happy to take her as she was past 30 weeks and doing very well. so off she went in the ambulance and I had myself discharged ( they wanted to keep me in but there was no way in hell she was going to another hospital without me!). At the new hospital Amelia was put in quarantine so they could do the 4 days mrsa checks. I loved having her to myself in her own little room and again the staff at new hospital were fantastic but they did pressure me to hold her and have some kangaroo care and i'm really glad they did as it really helped me to bond more.

One evening ( she was around 9 days old) my husband and I managed to go up and see her together. We walked in to her room and there was a woman in there with twins! I instantly burst in tears and starting shouting where the **** is my baby ( yes i did swear!).Without telling me she had been moved to the main nicu nursery! Now as I explained to the nurses on shift that night a phone call to warn us would have been appreciated. I thought something bad had happened. Now the Main NICU nursery at new hospital was a lot smaller than the huge one she had been in when first born, it only took 6 babies at a time and I couldn't cope with all the other babies crying, the parents in there and all the alarms. It felt like I was now sharing my baby with EVERYONE and all i wanted was it to be just me and her and the husband. I would day for the first 2 weeks I was very angry, I felt cheated and when I was in the neonatal unit nothing and no one else mattered apart from Amelia, which wasn't a healthy attitude to have as I have 3 gorgeous boys as well.

There were ups and downs in the neonatal unit, one day Amelia would be doing so well and then the next she would be having braddy after braddy and needing oxygen then not needing oxygen, having apnea's. It was stressful but the thing that stressed me out the most was the inconsistent advice from the nicu staff. One would be telling me it was okay to latch her on to the boob then I would have another saying no, one saying i could put her in an outfit then another saying no! One telling me to cuddle her lots then another saying I should put her down as i was tiring her out. It got extremely frustrating and I felt like she was the hospitals property not my daughter! I am a stubborn strong willed person and to be told I cant do something for my own child was like waving a red flag. 

The other thing i found really hard was the nurses deciding what was important to tell me and what wasn't.  I live a 5 min walk from the hospital and I would say every night when I went home, if she has more than 2 braddys I want to be called so I can come and sit with her in the night. Quite a few times I would go in and read her chart the next morning and it would say she had had 3,4,5,6 braddys! I would ask them time and time again 'why didn't you call me?' and all they would say was 'oh well we thought you needed your sleep more and they weren't major or a big deal, we are use to these things'!! I wasn't!! It was my mother who came in to the hospital and spoke to the Sister in charge and explained to her how I was feeling and it may be normal to them for Amelia to be having these braddys but it certainly wasn't normal for me or my husband and seeing as Amelia was our daughter not theirs they should contact me as I had requested! It wasn't until my mum threatened to make a formal complaint that they actually listened! Now i'm not saying I though the staff were awful because they weren't 95% of them were fantastic but I do think they forget how the parents must be feeling!

On the Support of family and friends:

I don't think I am really ready to answer that question. I would like to say my family were fantastic and have been there for me. I will say this though, I have an amazing friend who buried her preemie son born at 22 weeks 2 days before I went in to labour with Amelia, and she was supportive the whole way through labour, delivery and afterwards and has been ever since and she is the LAST person I would expect such fantastic support from. Perhaps one day I can answer this question properly but for now I cant.

Amelia-Jayne is coming up to 7months now 4 1/2 months corrected and so far so good!, she has an intolerance to cow milk protein, severe reflux that no medicine helps and they think she is going to need glasses, but that is it for now, the only thing i am concerned about is her weight gain and her movement on the left hand side of her body, she doesnt really use her left arm but I am waiting to see consultant. She was born with a PDA but they think its closed now thank goodness and will be double checking in december.

The Facebook Support Group

I started the group I <3 my preemie end of may 2011 just after Amelia came home. I started it because all of a sudden I felt like I had absolutely no one to talk to. When you are in the neonatal unit you have the staff and other parents to talk to that understand exactly what it is you are going through, but when you come home its weird!! 

Everyone just expects you to move on and get on with it! Your baby is home now so they must be okay. When amelia came home she wasn't due to be born for another 5 weeks! I felt extremely isolated and scared.  I needed other preemie parents to talk to, so I searched on facebook for support groups for preemie parents and didn't really find any. I found a couple but no one seemed to be posting on them. So i thought to hell with it, I will try and start my own group. So I did! I added parents on to it that I had met on the NICU and it just took of from there. I would go to other groups that I knew for just parents and asked if there were any parents of preemies that would like to join and there were. and I thank god there was! I found I suddenly had a purpose! The support I have had from the parents on the group has been fantastic and I am so honoured and privilidged that these parents share their precious ones pictures and updates and stories with me and others, I really hope that the group is helping others as much as I have found it has helped me.

On running the group

I haven't had many downs to running the group, as you know there was an incident when one of the parents started having a go at us for dwelling and moping in the past as she put it, but thats not what we do at all. We discuss what happened in the past, of course we do but I think its healthy for us to talk about it and not keep it bottled up. I genuinely believe if it wasn't for talking to other parents on the group I would have suffered PND again. What I would also like to do is run a preemie parent baby/toddler group at the local children and family centre!

My one piece of advice to preemie parents is this -  make sure you have a good support network, don't shut people out if they want to help then let them xxxxxx

 ..............................................................................................................

Danielle's group is absolutely fantastic - as a member I can personally vouch for it.  I only wish that I had found it sooner because then I might not have suffered my PTSD breakdown.  One wish I have through publishing Danielle's story and the link to her group is that no parent of a child born to soon will ever have to suffer alone.  And there we have a common purpose.

So please, if you have had a premature child or you know someone who has, then please pass on Danielle's link.  

I <3 my preemie

November 17th: World Prematurity Awareness Day!

Purple Ribbon for Prematurity Awareness

Each year 13 million babies are born too soon.  Given how many babies are born in total 13 million is a relatively small percentage.  But 13 million babies.... it shouldn't happen, but it does.  And some women such as myself, who did everything right will never know the reasons why it happened.

Today I am wearing a purple ribbon.  In doing so I hope that people will ask me why - because then I can tell them.  Tell them what I now know and what I didn't know before my daughter came along so suddenly and so unexpected 3 months before her due date.

The world is full of miracle babies who were once tiny fighters.  The world is also full of bereaved parents who have had to accept that their angels were no meant to stay in this world.

Beautiful Babyzoid

So please tell everyone you know what today is, because you could very well be speaking to someone who will one day have to go through what myself and all of the other parents I have featured on this blog over the past couple of weeks have been through.

Finally, please visit the following links to find out more:

World Prematurity Day on Facebook

March of Dimes

Bliss

Tommy's

Not Even a Bag of Sugar

Mummypinkwellies

First Touch

I <3 My Preemie Facebook support group

Hospital transfers: Mummy and Daddy Pinkwellies and the arrival of Littlebit

Today is World Prematurity Day when the issues of prematurity are brought to the fore.  Please visit the dedicated Facebook page to show your support:


http://www.facebook.com/WorldPrematurityDay


Today it is my privilege to introduce a guest post by Mummypinkwellies, a close friend and excellent blogger who gave birth to Littlebit under dramatic circumstances at 30 weeks.  We also hear from Littlebit's Dad, Daddypinkwellies on how he coped with the trauma of having an extremely sick wife and daughter:


In the words of mummypinkwellies:


I'm not going to go into great detail here on the surprise arrival of Littlebit. Only to say that on 23rd September 2010 we set off for the hospital thinking that today was like any other day. Hubby had taken the morning off work for an ultrasound scan, I was 30 weeks pregnant. Little did we know that 10 hours later I'd be on the operating table, having a life saving operation, in a hospital that couldn't deal with babies that were born that early! You can see more of my birth story )


So, Littlebit was born via emergency c-section that evening. The surgery followed a day of sitting in a room on labour suite, feeling fine but being told I was desperately ill and that the only way to make me better, and essentially save mine and my baby's life, was to deliver her. The midwives were frantically calling around other hospitals all day trying to find a unit that could deal with babies born at 30 weeks and the plan was to transfer me by ambulance to one of these hospitals. At one point they were in touch with Lincoln (70 miles from home) and even Manchester at one point (123 miles from home). But there were no beds and cots available.


They finally managed to arrange a 3-way transfer. Twin babies from Coventry would be moved to Warwick, a baby from Warwick would come to Nuneaton (the hospital where I currently was) and I'd go to Coventry. The ambulance was on its way to pick me up, when I was suddenly deemed to be unfit to be moved. The transfer was cancelled.


The registrar arrived back in my room and said they were going to prepare me for theatre. Now. Here.


"But... you said you couldn't deal with babies that young here?" I said.


The midwife responded that the neonatal team are trained to deal with them they just don't have the funding to deal with them. "What?" But there was no option now. They had to get her out, for both our sakes. Once she was out they would work on her there until the neonatal transfer team arrived to move her to a currently unknown location to a more specialised neonatal unit.


I naively assumed I'd go with her.


Hours later, I'm in recovery after a fairly traumatic surgery. Hubby has been allowed to go to SCBU and see our scrap of a daughter. 2lb 4.5 oz, born at 9:27pm. He arrives back with photos of this tiny dot, I cannot wait to meet her.


A few minutes later the midwife arrives to take my 15 minute obs and tells us that the transfer team are with Littlebit, prepping her for her journey to Kettering. That they'd bring her through my room on the way so I can see her. I still hadn't really comprehended that she'd be going alone and leaving me in a hospital 40 miles from her for the first 4 days of her life.


This is where Daddypinkwellies takes over the story...


I went down to see my daughter on the hospital's SCBU. She was surrounded by equipment and covered in tubes and wires and she was tiny. Tiny, but beautiful. I was overwhelmed with love.

Littlebit next to Daddy's hand - an hour old

I was relieved to have seen her, so relieved, but then nervous about her imminent transfer and what lay in the days ahead. I tried to get some sleep, but in an upright sweaty leather chair with a midwife coming in to monitor my wife every 15 minutes I didn't have much success. Luckily, the midwife we had that night was wonderful. She really looked after both of us.


Early the next morning we were told they were preparing Littlebit for transfer to Kettering and that they'd bring her through my wife's room so she could at least see her. They did so. They brought this ginormous incubator through the room, Littlebit was wrapped in bubble wrap and had a white helmet / hat thing on her head. It was a strange thing to see. But the moment my wife saw her I watched her fall in love right infront of my eyes.


The next 4 days are a bit of a blur. I felt like I was torn in half. I wanted to be in both places at once. I was driving up and down the A14 every few hours between the two of them, taking the little bits of breast milk my wife had managed to express over to Kettering, spending a few hours there, then heading back to see and update my wife who was still in the High Dependency Unit.


I was taught to do Littlebit's "cares", had everything explained to me and even got a cuddle or two. It was amazing. But it wasn't quite right as we weren't a family yet.

Daddy's first cuddle

To this day I don't know how I got through it, but I did, without even thinking. I was on autopilot. I needed to be there for them both and I did the best I could.


I was so relieved when my wife was discharged on day 4, even if she was readmitted to Kettering the very next day for a further week. That day, day 4, we flew down the A14. My wife was desperate to meet our little girl properly, and I was desperate for them to be reunited. It was everything it should have been. It was perfect.

A family reunited

The reason that Littlebit was transferred so far from her Mummy was because none of the local units had space for them. This is an all too regular occurrence.


Bliss' 2008 Baby report, Baby steps to better care, found that three babies every day are transferred not for good reasons such as surgery at a higher level unit, but because the hospital did not have the space or staff to look after them.


Transferring a baby requires specially trained staff and purpose-built equipment. Transfer is a time of great anxiety for parents so staff need to be available to explain what is happening and provide reassurance.


With the predicted cuts set out in Bliss' latest SOS report, Save Our Special Care Babies, Save Our Specialist Nurses  will these transfers still be possible and timely?


The transfer of Littlebit, although possibly the hardest part of our journey, was essential and saved her life. We must ensure that these services do not suffer from the NHS cuts.


You can tell the Health Minister to stop these cuts here (Bliss website)

My story, by Robyn Ford

My boys were conceived via IVF, our first attempt just 3 days after our wedding.  I was so scared getting to 12 days, part of me didn't want to wish anything or get my hopes up as we miscarried at 9 weeks 5 years previous. Part from my parents, we didn't tell anyone.  We had a few bleeds in the first 15 weeks, each time, I felt my dreams shatter but each scan showed too little heartbeats.

From 15 weeks onwards, we started to get excited, we told all the family and friends, everyone was getting excited.  From my 6 weeks scan, I knew I was having boys, just felt like they were boys.  We had most things planned out for their room but decided not to buy anything until we got to 24 weeks, just in case, I wasn't worried about having them that early something just made us think that, something that looking back, I am so glad we did think that.

When I was nearly 20weeks, we went for trip to Mothercare and found our pushchair, it was on sale as well so we thought it was a sign that we should buy it so we did and it would be delivered in 12 weeks time.  This was on the Monday.  On the Wednesday at 20 weeks, I was sitting at home when I heard a pop and felt wet, my first thought was Ii was bleeding, after checking, it was clear fluid, my waters.  I woke my husband up and after speaking to the hospital, we made our way up there.  My parents were on holiday so I phoned my sister to ask her to meet us up there.  When we arrived at the hospital, they confirmed it was my waters that had gone and send me for a scan.

The scan showed twin 1 had no waters left and twin 2's were leaking.  They gave us the worse news there and then, our babies wouldn't survive and I would miscarry shortly.  I was put on bed rest and given antibiotics to stop infection and they explained that because i was under 24 weeks they were looking after me, not the babies, they were not viable in their eyes.  I had to make the heart breaking phone call to my parents to explain what was going on, they started to look at flights to get them home.  The next few days, nothing happened, we were just waiting.  My sister and husband sat by my side every minute of each day, talking, crying and just going through the motions.  My parents managed to arrive back on Monday morning, to say I was relieved was an understatement.

On that day, I felt like I had trapped wind but I didn't want to make a fuss and when visiting time was over, (was put on the antenatal ward) I said goodbye to my husband and parents.  About 2 hours later, I went to the toilet and managed to go for a number 2, but then i went back again as i felt like I needed to go again, but nothing.  I went to wipe and felt something, pressed the alarm and it all kicked up.  I was rushed round to the labour ward when I was scanned by a doctor who told me that twin 1's cord had prolapsed, the baby was on its way.  I was in a room, all on my own waiting for my hubby and family to arrive. I hated seeing their faces, seeing them so upset, they knew what was coming and I felt like i had let them down.  I was given some drugs which seem to knock me out, everyone stayed in my room and just waiting.

I woke up and felt the urge to push. I was wheeled round to a private room where I had the most amazing midwife and with my hubby and mum either side holding my hand. Baby Connor Stuart was born... born breathing and put straight on my chest. I remember being scared, wondering what he would look like, would he look like a baby, and he did, he was a perfectly formed tiny baby.  My sister and dad came in and we all had cuddles and he was blessed by the hospital chaplain, he was surrounded by all of us when he took his last breathe at just 2 and a half hours old.  We were told twin 2 would follow shortly.

So again, we played the waiting game.  We had Connor in our room for 36 hours before we said our goodbyes, time spent just the 3 of us, cuddling him, talking to him and me telling him how sorry I was that I had failed him.

The waiting game seemed to go on, each day the doctors telling us there was no chance but somehow we made it to 23+5 and was given steroids.

When I hit 24 weeks i started to feel 'off' cant really explain it, bloods were taken and my infection level (crp) was rising and so was my temp.  They decided to transfer me to a level 3 hospital just in case.  They assured me that I wasn't in labour, there were just be careful.  We got to the hospital (closely followed by my lot) and within 10 minutes of being there, they said twin 2 had to come out because I was very poorly.  They told us that baby had a 2 % chance, things were not looking but but if baby showed signs of life, they would help.  They broke the remains of my waters (didn't want to give me a c section because of the high risk to both me and baby with my infection) and within 2 hours, baby Harry Anthony was born.  I remember hearing a baby cry and asking my mum was that my baby? she laughed and said who else would it be!  Harry weighed in at 1lb 5oz and was taken straight to the NICU.

He was on the vent when I saw him 3 hours later, he wasn't tiny to us because he was bigger then Connor but I remember his skin being worse, he was bright red, Connor had normal coloured skin.  Harry was taken off the vent at 6hours old and put on Vapatherm.

We were told the first 24 hours were critical, Harry sailed through them.  I got my first cuddle when he was about 19 hours old, best and worse time for me, best because he was here but worse, because I would never hold both my boys together.  Harry carried on doing well, until he was a week old, he started struggling on his vapatherm and was de-satting and bradying all over the place, then they started to pull up green muck through his feeding tube. He was taken off milk but that didn't help, he needed more help with his breathing so was put on Cpap but a few hours later, he went downhill and the doctor told us he needed to be put on the ventilator.  My heart broke there and then again as I started mentally preparing two funerals.  The results came back and Harry has a chest infection, Ecoli and staph.  I couldn't cuddle him when he was on the vent, I couldn't even change his nappy, I was too scared.  Slowly he got better and 3 days later, took him off the vent and back on vapatherm (tried cpap but he was having none of it)  He went back on feeds and was doing well, they noticed he had some hernia's but said that it was fairly common, he struggled ongoing for a poo bless him so often needed a helping hand.

We were waiting for him to hit a kilo so he could be transferred back to our local hospital (St Peters was a 3 hours journey for me as i didn't drive)

At 5 weeks, even though he was no where near the kilo, they were happy with him and he was transferred back to east surrey.  Worse thing in our journey.

This hospital was awful, the first thing I was asked was where was twin 1! They didn't seem to care.  I told them that harry was off but they didn't listen and left it until he was bad and when he needed blood transfusions, he would have to wait over 16 hours.

Whilst Harry carried on getting stronger with his oxygen, I struggled. I couldn't cope with the new hospital, Connor was still there in the morgue and it dawned on me, Harry has his dad and my family, Connor has no one, he needed him mummy. I'm not proud but I made a mistake at this point but was found by a member on cleaning staff who got me inside so I could be seen.  I was transferred to our local mental health hospital where i was placed on a 24 hours watch for my sake.  I managed 4 hours before I had to get out to see Harry.  I was allowed to sit by Harry but with a member of the team with me at all time, I felt like I had let both my boys down.

Harry slowly started putting on weight and went in a hot cot. Then he was started on formula (I was unable to express any more due to medication) and the weight started packing on,  Then he was in a normal cot and finally got to have a bath at 11 week old.  He needed it, his feet stunk!

We had a discharge meeting when we found out Harry was going home on oxygen but his doctor wanted me to hold Connor's funeral before Harry came home.

Harry did have a brain bleed just after birth but it cleared up, he had a PDA which cleared up on his own and ROP which cleared up.

On the 30th July 2011, we held Connor's funeral whilst a lovely nurse who I trusted and knew from St Peter's, came in on her day off to sit with Harry and give him cuddles.  We started in that weekend and then on the Monday, my little 4lber came home.

He was on oxygen until he was 9 months old.  He has surgery on his hernia's at 10 months.

Harry is now 18 months old actual, he is walking around and a true miracle and my blessing, if it wasn't for him, I wouldn't be here. 

He has some small issues, his lungs are bad from CLD and BPD and seems to have bronchitis every few weeks but he is perfect.  He is weighing in a massive 16lb.

Without a doubt, if it wasn't for my hubby, my mum, dad and sister, I don't know how we could have coped with everything, they were fantastic.  Our friends, not so much, they didn't seem to know what to say so it was easier to say nothing.

The whole experience changed me.  I am no longer care free. I'm very angry but very lucky, I have two gorgeous babies, me and harry go and visit his brother every single day, harry, every morning, goes to his brother's photo and kisses it.

Prematurity Awareness 2011: First Touch, an inspirational charity

The Neonatal Unit (NNU) at St George’s Hospital cares for over 500 new-born babies each year (up to 35 at any one time) in the intensive, high dependency and special care nurseries at the hospital, which is based in Tooting, South West London.  They have just jointly funded a Family Centred Care Coordinator with Bliss for 3 year, an exciting and necessary service that I and no doubt thousands of parents of premature children wish we had had access to a we struggled to come to terms with the implications of having a baby born too soon.

Sarah Collins tells us in her own words why she is so passionate and dedicated in her work for the First Touch charity at St George's Hospital in Tooting.

I had worked in the charity field for many years before I had children. I became involved with First Touch, the charity supporting the neonatal unit at St George’s Hospital in London, initially as a volunteer. I became involved for a very simple reason; My eldest daughter, Isabel, was born 3 months prematurely in 2001. It was a total shock. She was desperately unwell, and on her second day of life sustained a grade 4 IVH, the most severe type of infant brain haemorrhage. She wasn’t expected to survive the night. We ‘roomed in’ on the neonatal unit, spending precious hours looking at Isabel in her incubator, attached to numerous tubes and wires, as she fought to cling onto life. Miraculously Izzy did survive. We endured the traditional roller coaster of neonatal ups and downs. She had brain surgery after 2 months. She came home from St George’s after a three and a half month stay at the nnu. My gratitude to the clinical staff at the unit is infinite.

First Touch is based at the neonatal unit at St George’s Hospital in Tooting, south west London. The charity was set up in 1998 as a way for supporters to donate money that they knew would go directly to the neonatal unit and help the babies, families and nurses. St George’s neonatal unit is the level 3 centre for south west London, and we take the sickest and most premature babies from Kingston, Mayday, Epsom and St Helier Hospitals. St George’s is also a surgical centre for babies from the south east of England.

First Touch spends the majority of money from donations on medical equipment, but also funds specialist nurse training and family welfare. Our purchases in 2011 include 2 incubators, 2 ventilators, a cerebral function monitor, specialist twin cots, noise monitors, and apnoea monitors. We have funded a £60,000 simulation training programme and nurse post thanks to a very generous donation from the Rbaby Foundation in New York City. Our commitment to training nurses and helping parents continues this year as we embark on a groundbreaking partnership with Bliss to jointly fund a Family Centred Care Coordinator at St George’s for 3 years.

I feel truly honoured to work for a charity supporting a cause I feel so passionately about, and for a unit that I owe my daughter’s life to. Our supporters include local businesses and a wide range of parents wanting to ‘give something back’ to the neonatal unit.

The most humbling of our supporters are bereaved parents. An amazing family have just handed over a cheque for over £25,000 to fund a ventilator in memory of their precious son. This is the result of four years of dedicated fundraising. We have a policy of putting plaques on equipment funded by donors, and this is particularly important when families have enabled us to purchase something in memory of a baby - it serves as a lasting memorial to the baby’s treasured but short life. We have also been given generous donations to purchase memory boxes for bereaved parents, and to fund the annual memorial service for bereaved families at St George’s.

We have only two part-time members of staff, and very few overheads beyond salaries. We work closely with clinical staff and ensure that money is spent where it is most needed and most benefits our tiny patients.

Our website
www.first-touch.org gives a wider overview of our work, and the work of our fantastic neonatal unit. We have some wonderful patrons, including Sophie Raworth, Ortis Deley, Chris Jarvis and Martine McCutcheon who have actively supported our work. Ortis Deley recently appeared on Celebrity Mastermind with First Touch as his chosen charity, and Sophie Raworth has run The Great North Run for us twice. Sophie will be hosting our official launch of the Family Centred Care Coordinator post this month.

We are small charity with a massive cause - tiny patients! My colleague Sonja Timpson and I are grateful to all our supporters, and proud to work to support such an incredible neonatal unit.

Sarah Collins
Charity Manager
First Touch - supporting sick and premature babies at St George’s
Registered charity 1072500

Silent Sunday (honeymoon edition)

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Mummy and Daddy Beadzoid are getting married today!

   Prematurity Awareness Campaign 2011 returns on Monday :)

Prematurity Awareness Campaign 2011: PND and premature labour

This powerful account of the mental and emotional impacts of leaving hospital without your baby needs little introduction.  It is a devastating experience and one which those of us who have been through would not wish on anyone.  

Post Natal Depression following premature birth, by Debbie Huddleston


No one can prepare you for the realities of having a baby. And no one can prepare you for the harsher reality of having a premature baby. It is crushing in its impact and the intensity of the experience will stay with you for life, influencing everything you do and say. Coping psychologically with the experience is challenging in the extreme and it is not surprising that the incidence of postnatal depression in mothers of prem babies is far higher than in in those with full term babies.

When my waters broke at 31 weeks I was convinced my baby would die. I knew nothing about prematurity - I just knew my body had failed to do what it was supposed to do. I felt guilt, terror, panic, embarrassment (I was at work!) in equal measure. It was two days before my son was born - two days spent leaking waters in a hospital bed and wondering when he would arrive. Being told by a well-meaning paediatrician that I shouldn't worry (apparently nobody worried about 31 weekers - they weren't a challenge, it was the 28 weekers and below that were a worry) was unconvincing. That was the first time I saw my son as a medical case, a figure of interest to medics, who wouldn't see him necessarily as a person but a series of medical incidents and notes. I was lucky - when he came he was very healthy and was classed as a 'feeder-grower' by the doctors, who paid him little attention as he fed and grew over the 24 days he was in hospital. Our NICU and SCBU journey was short and relatively easy compared to many, but I struggled to come to terms with what had happened when we got home with our fragile little bundle. Within days I was suffering panic attacks, feeling desperately low and terrified of looking after him alone. Unable to sleep or eat, I wished myself away and wondered why I'd chosen to ruin my life by having a baby.


I will never know if I would have suffered from PND if my son had not been prem, but I can pick out a number of things that contributed to my mental state, definitely as a result of his time in hospital.


It is heart-wrenching leaving hospital without your baby. The day I was discharged I sobbed all the way home and then every morning on the tube as I commuted back to the ward with my bottles of expressed milk to visit my baby. Noone should have to visit their own baby a week after the birth. And then there was the milk. The only thing you can do for your baby at that stage and boy did I struggle. My supply dwindled but I refused to give up and pumped religiously every 3 hours. I took drugs to increase the supply (a side effect of them was anxiety but nobody mentioned that). I was obsessed with millilitres and, when he finally took milk 'at source', timings. Managing to breastfeed for 9 months in the end I credit with helping me to get well.


Medical staff have a bigger impact than they realise. I will never forget the kindness of one of the nurses who sat with me as I sobbed and took me into a sideroom as I broke down. Nor will I forget the clumsy response of a nurse who shouted at me when she saw me carrying my baby from one side of the ward to the other 'Mum - put that baby back in the cot! You must not carry him about like that!'. All your mothering instincts are squashed in a neonatal unit. As a first-time mum trying to learn the ropes it is crippling and yet one day you are sent home with your baby and have to get on with it. Suddenly the responsibility of looking after this tiny fragile being, that has been shared for weeks with numerous health professionals always on hand, is yours and yours alone, with noone to ask in the middle of the night if it is normal for your baby to vomit a whole feed up and with no monitors to reassure (or scare).

The doctors don't always talk much to the mothers of 'feeder-growers' - not much medically 'interesting' about them. Hard to understand as a mother when your baby has needed incubating, feeding with a tube and can't come home. A far cry from the happy picture of motherhood you have in your head of sitting in cafes breastfeeding and chatting and eating cake. There are things that happen that are so trivial and routine to the doctors (such as a slowing heart rate or baby forgetting to breathe) but that seem awful to parents, or did to me, even when the doctor assured me it didn't 'matter' and he'd grow out of it. A roller coaster of worry and relief became a daily experience.

I am incredibly lucky. My son was, and still is, healthy. I spotted the signs of my illness in myself and rapidly asked for help. I had the support of my husband, a super health visitor and free nhs counselling (a pilot perinatal scheme that sadly has been scrapped) and I recovered rapidly - much better in weeks and 'back to normal' within a year. I am also lucky enough to be a mum to a new baby, currently 6 weeks old, who arrived at 38 weeks, at twice my son's weight and able to leave hospital with me. A happy day! Despite my fears of it returning, so far there has been no sign of the dreaded PND, and I am enjoying motherhood as it should be. At home.

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Please visit daily for more Prematurity Awareness 2011 posts, and please please share.  This is all about creating awareness of prematurity and the issues that go with it.  

Thank you x

Breastfeeding a Premature Baby - one mum’s experience

Whether or not to breastfeed is a choice many new mothers have to make.  For mothers of premature babies it is strongly advised that your tiny fragile baby is at least given the colostrum, or first milk, as it is kinder for the baby's under-developed digestive system.  Of course premature labour is such a stressful event that for some mothers the milk does not come in or the mother just feels she cannot breastfeed for one reason or another (or the demand is overwhelming in the case of multiple births).  For me, I felt like it was something I could do for the little girl I hadn't expected to meet for another 3 months.  I wanted to do something, anything, so expressing milk and eventually breastfeeding was a choice that was right for me, after all, with the care of my baby taken out of my control, I felt there was little other contribution I could make - and that is a heartbreaking situation for any new mother to be in.

It is therefore my pleasure to publish Rachel Evan's experience of breastfeeding her son, born at 27 weeks by C-section.

When I found out I was pregnant with my first child, I was over the moon. I immediately bought all the pregnancy magazines and books I could find and sought out information on the Internet. I booked the birth at a midwife led unit, planned my NCT classes and looked forward to a natural water birth. I always intended to breastfeed my child, and while I knew that it wasn’t always easy, I was confident that I would be able to do it.

For the first six months I sailed through my pregnancy until a routine appointment with my midwife. My midwife referred me to hospital at 26+3 and after a fraught few days my son was born at University College Hospital by C section at 27 weeks, weighing only 1lb 4oz. He had a very rough ride to begin with and breastfeeding was the last thing on my mind. However I had been given some leaflets from the premature baby charity Bliss including ‘Breastfeeding your Premature Baby’ and I understood that I would need to start expressing milk to feed my tiny son. I learned that babies this small have really delicate stomachs and their mother’s milk is very good for them and lowers the risk of potentially fatal conditions.

I began by hand expressing, copying the technique from the booklet. Nothing happened at first but on day two I started to see tiny drops of milk which I collected in a syringe. The nurses put it in the freezer as my son, who we named Tal, was too small and sick to feed even by tube, and he had to be fed intravenously.

I followed the booklet’s advice to express at least every three hours even at night to try to stimulate my milk supply, as a newborn feeds very frequently. On about day three I braved the expressing room (or the ‘milking shed’ as the mums called it) where I found three industrial looking electric pumps and also many other mums to give me advice. I am still friends with some of the mums I met in that room. I started to pump tiny amounts of colostrum, 10 or 20ml at a time. It was painful at first and made my nipples bleed when I set the pump too high, but it got easier over the days and I was glad to be able to do something practical for my baby, who I had still not been able to hold.

I swapped tips with other mums about what helps your milk supply- fennel tea, fenugreek and Mars bars were all recommended, and there were also some mums taking medication prescribed by their doctors. My supply was not great but I persevered until my son was nearly four weeks old. After a trip to Great Ormond Street for surgery my already small supply started to dwindle. I tried expressing every two hours to help but it didn’t work, so I went to the GP and was prescribed Domperidone. She had never heard of it being used to increase milk supply but was happy to help. It made a massive difference and I continued to take it for several months.

After several weeks I stopped expressing at night. I would express last thing at night and first thing in the morning, and throughout the day every three hours (in total six or seven times a day). When he was three weeks old Tal started to feed by tube, beginning with 0.5ml every four hours to prepare his delicate gut. It was great to see the milk was finally starting to help him, and I really felt that I was doing something for him that noone else could. I finally had my first cuddle with him when he was 30 days old.

Over a few weeks Tal’s feeds gradually increased according to his weight until he was fed solely on my milk. He was fed by tube every hour. At six weeks old he managed to come off the ventilator with the help of steroids and at seven weeks old he was transferred to our local hospital Northwick Park.

I had borrowed a hospital breast pump which I had to return to UCH, so I got a new pump for home secondhand from Ebay. The local NCT also hires them out. I brought a coolbox full of frozen milk with me from UCH but as Tal grew he ate more and more and soon got through it. As he got bigger and started to have time off CPAP the nurses would give him a few drops of milk from a syringe so he could taste it in addition to his tube feeds.

There were one or two occasions when infection was feared and feeds were stopped but generally Tal coped very well with his feeds. At around this time he had a period of slow weight gain, and one of the consultants suggested that he should be partly fed formula to assist. I refused as I felt it would be the beginning of the end and I was still determined that having come this far I would breastfeed Tal.

As he approached term age I wondered when we would be able to try breastfeeding. He was not making progress in having time off CPAP and I wondered about feeding him on it, but I didn’t ask in case it was a daft idea. Finally one day Mylene, a nurse who looked after Tal a lot, suggested I give it a try. I tried at for a few minutes each day, helped by Mylene, the breastfeeding nurse Anne, and Aine another pro-breastfeeding nurse. They all helped Tal and me to get comfortable and offered screens to feed in private and a specially designed breastfeeding cushion. I was so pleased when on about the third attempt Tal latched on and actually got some milk (we could tell by checking his stomach tube). 

I continued trying once a day, then eventually twice a day. By this time Tal was on high flow oxygen so it was much easier. After discussion with one of the nurses we also introduced a bottle at night to replace one of his tube feeds.

Although we were making good progress this was one of the most difficult times in terms of feeding. I was still expressing all Tal’s milk as well as feeding twice a day. He was past term age and starting to want to drink his milk rather than have it by tube and over a few days I was put under tremendous pressure to allow more bottles at night. I did not want to do this because I was worried about the effect on breastfeeding. These discussions went on for a few days until Tal pulled his feeding tube out one night and it was not replaced.

Because of this I felt enormous pressure to be at the hospital for at least half of his feeds to make sure he did not go off breastfeeding in favour of bottles. There was also a period of time when I was breastfeeding and he was still getting a full tube top up afterwards. Because he was feeding and then I was having to express the top up I could not keep up with demand, so after discussion with the nurses his top ups were slightly reduced.

Eventually I agreed to demand feed Tal in the daytime with no top ups, and he would have bottles at night. I was reluctant because there was still no prospect of Tal coming home soon and without fixed feed times I would be tied to the hospital. However he started to make faster progress and four or five weeks after we started this, and after a trip to another hospital for surgery that thankfully was not necessary, Tal came home on oxygen aged five months and four days.

Tal came home fully breastfed. I continued to express three times a day and he would have this extra milk in a bottle before bed. He has turned out to be a very good sleeper! He would often feed for very long periods in the evenings but some internet searching assured me that this was normal and his way of stimulating supply. I gradually decreased the Domperidone I was taking now that we had feeding well established.

Tal was weaned early on medical advice but in terms of milk I got him to six months corrected age on breast milk only. I have given up expressing now and he has a bottle of formula last thing at night but we are still breastfeeding with no plans to stop soon. He has only had one minor cold since he came home and is no longer on oxygen- I like to think that his good health is at least partly as a result of breastfeeding. I found that a good way to keep going when I was tempted to give up was to think I will get him to x months old, and then review. Now he is ten months old (seven corrected) and I hope to keep feeding him until he’s well into his second year.

Update- Tal is a thriving toddler now. We gradually cut down on breastfeeding until he was only feeding before bed, and we dropped the last feed when he was 18 months old. He was losing interest and it felt like the right time to stop, although I was happy to continue.

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Please check back tomorrow to read an account of one mother;s experience of suffering PND (Post Natal Depression) following a premature birth.