To our son- our little miracle. Your journey into this world has been both amazing and terrifying. I have written a diary of what you have been through, from the day of our diagnosis, until the day you were allowed to come home from hospital, as I think it’s important for you to know. You never know, you may need to know in the future for your own medical reasons, or if you ever decide to have children yourself, you may find it useful. I hope you find it interesting too!
I also hope this may help other families that are expecting a child with CDH to know what to expect, and although everyones experience and situation is different, I hope this provides both information and hope, as it is possible for things to turn out well.
I am also posting a video link of our journey at the bottom of this blog that was filmed originally for Channel Four as a documentary on foetal surgery.
So this is the short version.
We never imagined we would have such a beautiful healthy baby after the
devastating news we were given during our pregnancy.
On the 1st May 2009 our little boy Charlie Maddox Leek was born at Kings College Hospital at 35 weeks and 6 days gestation weighing just 4lb 13oz.
Having been diagnosed with having a severe left sided Congenital Diaphragmatic Hernia at our 20 week scan things didn’t look good for Charlie, and we were told his chances of survival were less than 10%.
We were offered the opportunity to have a pioneering balloon surgery in the womb which we were told could improve his lungs and so we decided to go ahead with this. Charlie was delivered with the paediatric team present and was ventilated and given a paralysing drug immediately.
On day 4 Charlie underwent surgery to repair his diaphram by using a patch and his organs were moved back down from his chest. By day 9 we began to see Charlie move a little, and after 2 weeks and several attempts Charlie came off of the ventilator and onto CPAP.
Charlie progressed much quicker than we first anticipated and was moved from Intensive Care and into Special Care after just 4 weeks. He then had a set back whereby he would go blue when he cried and his oxygen levels would fall drastically. Charlie was moved back into Intensive care and this was obviously a really upsetting and worrying time.
We were told that the journey can often be like a rollercoaster and I would definitely agree with this in terms of progress and emotions. However, for a baby with a severe condition Charlie progressed incredibly quickly and after spending 7 weeks at Kings he was transferred to our local hospital for just 1 night. We were then able to take our baby home, without oxygen and breast feeding like any other healthy baby.
For anyone who is interested in the in-depth detailed account of our journey, please find below the diary entries I wrote at the time from the hospital.
MY DIARY
To find out we were expecting our second child we were over the moon. At our 12 week scan at Southend hospital everything seemed fine and we were given a due date of 8th June 2009.
15th January 2009
At our 20 week anatomy scan we were told there was a problem and that it looked like your stomach, bowel and liver were in your chest and that your heart was on the right hand side. We were told by the sonographer that they weren’t sure and that they had never seen this before. They quickly disappeared out of the room and couldn’t answer any of our questions. We were referred to Kings College Hospital and an appointment was made for 4 days later. We were distraught.
19th January 2009
Appointment at Kings College Hospital. Was scanned by a lovely lady called Catalina Valencia who was Colombian. Was diagnosed with a condition called a left sided Congenital Diaphragmatic Hernia. She explained that you had a hole in the left side of your diaphragm and that this happens in all foetuses but that it closes when babies are forming in early pregnancy. However yours didn’t.
As a result of the hole we were told that your stomach, bowel, and part of your liver had migrated into your chest area, squashing your lungs. She explained that when you were born you would find it difficult to breath and she then measured the size of your lungs. She measured the size of your lungs in relation to the size of your head and called this the LHR (lung to head ratio).
She told us that your LHR was 0.6 and that it was so severe that you would have less than a 10% chance of survival. We had to go into a private room to think about and discuss our options, one of which was to undergo a pioneering feotal surgery to try to increase the size of your lungs. We were told that the success rate was 50% but that they would only go ahoad with it if there were no other problems.
We decided that we wanted to go ahead with the surgery and so I had an amniocenteses (large neadle tummy to draw off fluid from around baby to determine if there are any other problems).
Was sent home and told to wait for the results.
22nd January 2009
Had to wait a painful 3 days to find out that there were no further problems and that we were therefore eligible to have the surgery. We were booked in to have the balloon surgery on 17th February 2009.
27th January 2009
Appointment to see Professor Nicolaides at Kings College Hospital to discuss the surgery.
Professor Nicholaides explained that the procedure involved inserting a balloon into your windpipe whilst in the womb at 24 weeks gestation. He explained that amniotic fluid goes into the lungs and out again via the baby’s windpipe (trachea) in all pregrancies, but that the aim of the balloon was to trap the amniotic fluid in the lungs.
This is because the theory was that the amniotic fluid would help to stimulate the grouth of vessels in the lungs.
We were told that we would have regular scans every week or every fortnight to look at the lung growth and to check that the balloon was still in place. He also explained that having the surgery could cause me to go into premature labour al 24 weeks, and that if this happened, the premature labour coupled with CDH things wouldn’t look good. It was explained that the longer I could pregnant the better the chances would be.
Professor Nicolaides told us that I would also need surgery at 34 weeks to puncture the balloon but that if I went into labour before it was removed emergency procedures would need to take place in order to puncture the balloon.
Professor Nicolaides was a very intellegent yet funny and charasmatic man which, despite the seriousness of the situation, helped us to smile and feel a bit more positive.
17th February 2009
Arrived at Kings College Hospital for the balloon surgery. Was scanned first and told that you were in the wrong position for the surgery and that you would have to be moved just before they done it. Had blood taken, was given antibiotics to prevent infection and a steroid patch to prevent me going into labour.
Professor Nicolaides tried to turn you by using his hands on the outside of my stomach. This was very painful and as this didn’t work he carried out the surgery in the position that you were in. You were given anaesthetic via an injection in my tummy and I was given a local anaesthetic. Keyhole surgery was then carried out and a balloon was passed through a tube into my stomach and then inserted through your mouth and placed in your windpipe to prevent the fluid from escaping.
When the fluid was retained it was hoped that your lungs would grow and push your other organs back a bit to allow your lungs to grow enough for you to survive. As it was pioneering surgery, it was observed by about 20/25 trainee doctors.
We had regular scans to check lung growth and that the balloon was still in the right place, also that I didn’t have too much fluid that could have caused premature labour.
21st April 2009
Arrived at Kings College Hospital for the balloon to be removed. The same process as having the balloon inserted was carried out and me and Daddy watched the whole surgery being performed on a screen in front of us. Was so relieved to know that if I went into labour the balloon was removed
24th April 2009
Woke up in the middle of the night to find my waters had broken!
Travelled up to Kings Hospital where, after spending several hours, was told that my waters hadn’t broken and was sent home.
Was at home for just 2 hours when my
waters most definately went!
Called the hospital and drove back up.
After several examinations etc was told that my waters had broken but that I wasn’t in labour. Was told to stay in hospital for monitoring.
Stayed in hospital on the William Gilliat ward of Kings College hospital for 1 week before you were born.
1st May 2009
You were born at 21.20pm. You weighed 4lb 13oz and being born at 35 weeks and 6 days meant that you were 4 weeks early.
The paediatric team were there waiting for you when you arrived. You were born blue and ventilated immediately, before you had a chance to cry. While the paediatric team were attanding to you, you done a wee wee over one of the doctors hands which made them think that one of the medications was leaking at frist!
You were then put in a squad (mobile incubator) and taken straight into Fred Still Neonatal Intensive Care unit. We watched while the paediatricians were attending to you and they stopped the incubator in front of us for us to see you. I blew you a kiss and
asked them to look after you for me.
Spent the night in William Gilliat Ward
and Dad had to sleep on the floor next to
me.
2nd May 2009
Went up to Intensive Care and saw you for the first time properly in the incubator. You were so tiny and beautiful.
You were on a ventilator just laying there very still as you had been given a paralysing agent to allow the ventilator to breath for you.
You were attached to lots of wires and
monitors and you wore a little blue and pink stripey hat over your little head. A nurse called Norette was looking after you today. Chiara, Nanny Marilyn, Uncle Dave, Mel, Sean, Jordan and Reece, Grandad Kevin, Nanny Pauline, Grandad Bob and Katie all came to to visit and meet you for the first time. Daddy drove home with Chiara.
3rd May 2009
Daddy drove up early this morning to meet me and we both went to see you. I stayed
on the postnatal ward and Daddy spent his first night at the Ronald McDonald House. This was charily accommodation on hospital grounds for families of sick children in hospital.
4th May 2009
Got discharged from hospital today and spent my first night at the Ronald McDonald house with Daddy. Felt nervous about your operation tomorrow.
5th May 2009 We went up to see you early this morning and watched you go down for your operation at 12.30pm today. Dr Ade Ajay performed the surgery which involved moving your stomach, bowel and part of your liver back down from your chest. He also closed the hole in your diaphram by sewing a patch to your rib cage.
You came back up from the operation at 4.00pm and we waited around until
9.00pm to speak to the surgeon to find out
how it went. We were told that the op went
well. We were also told what to be aware of for the future. The main thing we were told was that there is always a risk of re-herniation in that the patch could come away and your organs could drift back up. We were also told that there is a risk of infection due due to having the patch. Nurse Penny, who was lovely, looked after you today.
6th May 2009
Went up to see you, was told you had a good night and was still stable after your op. Your pressure on the ventilator was turned down from 18 to 17 today. Daddy went home to pick up Chiara from Nanny Marilyn’s and brought her up to stay with us.
7th May 2009
You were taken off the paralysing agent today at 11.00am. Nurse Roselle was looking
after you tonight. We had been watching you closely all day to catch your first movement.
Roselle looked into your eyes with a torch to see if you were close to waking up. She said that you wasn’t but I got to see your eyes for the first time. They looked a hazle/ brown
colour.
8th May 2009
You had a chest X ray today and it showed
you had gunk above your right lung so you were layed on your left side to try to clear it. You were also given a 5 day course of antibiotics in case it was an infection.
You were started on Total Parenting Nutrition and fat that you were given intravenously. Your morphine was reduced from 20 to 15 then to 5,and then it was stopped altogether at 21.00pm. Started oxygen this morning as they were waking you up. Your head circumference was measured at 31.8 cm.
9th May 2009
Sat watching you, waiting for you to wake up. Stroked your arm at 11.00 am this morning and you opened your right eye and looked straight at me. Made me cry with
happiness.
Changed your bum for the first time and
cleaned your face. Daddy done the same
and he saw you move your arm and leg. You were started on 1ml of milk per hour which you were given by tube.
10th May 2009
You were a bit more jaundiced today so you were put under the ultra violet light for a few hours. Your milk was put up to
2 mils per hour. You were moving a bit more today and fighting the ventilator so the doctors were talking about trying you off the ventilator and putting oxygen either up your nose or in the incubator. Changed your
nappy through the ventilator all on my own
today.
11th May 2009
Milk up to 5 mils por hour. We were told that you weren’t ready to be taken off of the ventilator yet. Found out that the top of
your right lung collapsed on Friday but we
looked at X rays with Dr Nick who said that it was ok now. Found out today that you have been having blood transfusions. Your oxygen levels went down to 40 (they should
be between 92 and 100) and the nurse had to call doctor over. Was told it was due to secretions on your chest as you weren’t moving about and so couldn’t clear them. This had never happened before and frightened the life out of me.
12th May 2009
Your weight is now 51b 4oz. Milk up to
8 mils per hour but this was stopped today while you were being taken off the ventilator. Took you off the ventilator at 15.30pm today and filled your incubator with oxygen.
Rung at 5.15 pm to find out how you were doing. Spoke to Anne who told us that they
had put you back on at 16.45pm as you
were struggling and they had to keep increasing your oxygen. Noticed that your arm looked swollen so told Anne who told me that one of the lines was put into your muscle tissue by mistake so they kept it elevated and kept an eye on it. Was told that you had to be sedated so they could put the tube back in -felt upset.
13th May 2009
Nurse Heather was looking after you today. Milk back up to 9 mils per hour. Was told that you were anaemic and that they were going to give you another blood transfusion. Was told that they were going to try you off the ventilator again tomorrow if you remained stable. Was told that your tummy looked bloated and that when they exerbated the milk from your tummy it didn’t look like it had digested so they stopped your milk to give your tummy a rest.
lan came from Norwich to visit you today. Your head circumference was measured today at 32.1 cm.
14th May 2009
Nurse Penny looked after you today. Penny told me that they would take your tube out if you were awake and moving about a bit more. Started milk again on 2 mils per hour, but it didn’t look like you were digesting it so they missed a feed out then carried on.
Not a good day, they decided not to take your
tube out.
Nurse Anna was looking after you today. Washed your slippers and blue blanket and put them in your incubator.
15th May 2009
Penny looked after you today and Belinda looked after you tonight. You were taken off the ventilator today at 11:30 am!
You were put onto CAP (continuous positive airway pressure) which was the same kind of tube but up your nose, not down your throat. Oxygen was given at 35%. You looked comfortable. Penny gave you the teat of a bottle to suck on and recommended that we got you a dummy to help the oxygen stay in and not escape out of your mouth. Bought you a dummies- one with a blue heart on and the other that said ‘sweet Pea’.
You knoched your main arterial line out of your arm so they took pin pricks of blood from your heal every 6 hours- they called this the blood gas. Penny told me that if you remained stable then I may be able to hold you tomorrow. You were started to be given caffeine as your tube was now out.
16th May 2009
Registered your birth this morning at Lambeth Town Hall in Brixton. Penny looked after you today, Beth looked after you tonight. Penny told me that they were just giving you token feeds of 1 mil of milk every 6 hours as they wanted to give your tummy a rest. Got called into room with Dr Ravi Batt and Penny. Doctor told us that you had a bug called VRE that was detected when they took a swab from your tube when they took it out.
They said it was colonised and not causing any problems so they decided not to do anything and to let it go on it’s own, unless you got an infection. Was told that its usually found in old people. Penny said that I could hold you so Daddy got the camera but Dr Ravi Batt said not to as your oxygen requirements had gone up and so to leave it for 48 hours. Bit disappointed.
Stayed with you until 10.30pm. Helped the
nurse change your hat to a blue one, and I saw your whole head of hair for the first time. You had thick black hair. Your ears were all flat to your head where you had the hat on for so long, so I tried to massage
them back.
17th May 2009
Anne looked after you today, and Roselle looked after you tonight. Anne took you off of oxygen and gave you just air and you were on for 2 hours. Milk at I mil every hour and was told that if you tolerated it, every 12 hours they would increase it by I mil. Today you were on minimum oxygen.
Daddy held you in the incubator while Anne changed the sheets from beneath you.
18th May 2009
Tonia was looking after you today. Went to see you tonight and had a fright when your oxygen levels really dropped as soon as I walked in and your nurse was out of the room. I called the nurse and was told the machine wasn’t picking up a clear reading but your face went a bluey colour and it really frightened me. Was told I may be able to hold you tomorrow.
19th May 2009
I held you today for the first time!
It was so nice to finally have a cuddle. I held you at 3pm for about 30 minules but then I had to put you back in your incubator as your oxygen levels kept going down.
Anne was looking after you today, Roselle was looking after you tonight. Anne told me that your oxygen levels dropped again and that if it happened again they would do blood tests to see if you had another bug or infection. Anne told me that we could put a vest on you.
Fire Alarm went off at the Ronald McDonald house tonight at 11pm because someone burnt their toast!
Chiara didn’t even wake up! Daddy got up and I asked him to check with a nurse to see if it was real fire as I thought it was in the hospital!
20th May 2009
Tonia was looking after you today and Roselle tonight. Walked in and saw that you had been taken off of CPAP and you had no hat on so I saw your full head of hair for the first time. It was thick and dark brown. Tonia told me that your CPAP came out when the doctors were doing their rounds so they decided to keep it out and see how it went. You only desaturated once today when your oxygen levels went down to 84%. Milk up to 11 mils per hour by tonight.
21st May 2009
Julie looking after you today, nurse Hyacinth tonight. Milk up to 12 mils per hour. Oxygen at 30%.
You had a good, uneventful night. Today you weighed 2-566g (5lb 10oz). Daddy held you for the first time today at about 3.00pm. Came to see you tonight. Julie told me that they done a blood gas test and (prick of blood from your foot) and your CO2 (Carbon Dioxide) in your blood was high so they decided to retest in 2 hours at 8.30 pm and if it had increased it meant they may have had to put you back on CPAP. Went back to look after Chiara and Daddy came up to see you- was told that as your CO2 levels had increased they decided to put you back on CPAP for 4 hours to see if it made a difference. COz result from blood gas was 8.12.
22nd May 2009
Ade was looking after you today. You were started on milk again today after it was stopped yesterday when they put the CPAP in. Milk up to 13 mils per hour and increasing by I mil every 12 hours. Jummy looked after you tonight- she was really nice and sang in a gospel choir. She said she was in the delivery room to pick you up just after the birth. She told me there were 4 of them at your birth- Chris Harris, Nolette, Anoup, and Professor Greenough.
Nanny Marilyn and Dave came to visit you today and took Chiara back with them after her milk at bedtime. Went up to see you with daddy which was nice and had my 2nd cuddle with you. Went home at midnight.
23rd May 2009
Maria was looking after you today. Milk up to 15mils per hour. They decided to hold on 15 mils so they could do 16 mils when they removed your long line tomorrow. Looked uncomfortable so they removed it today. Dr Silke Lee removed your long line. Jummy looked after you again tonight and gave you your first bath. Me and Daddy stayed with you until midnight and bathed you with Jummy- you didn’t seem to like it much. Daddy changed your bum and you pooed everywhere in your cot- Daddy called for help!
24th May 2009
Jude looked after you today. You had a good night and was stable. You were still tolerating feeds on CPAP. Your CPAP pressure went down to 5 and you were generally on 30% oxygen, but did go up to 51% when you were upset.
Told Jude that you seem to cry when you have your milk and she said that you may have reflex so she gave you your milk in 2 lots of 8 mils with an hour in between, rather than all 16 mils in one go. Both me and Daddy had a cuddle with you today. Jocelyn looked after you tonight, she was very nice.
25th May 2009
Tonia looked after you today-she said that they were going to try you off of CPAP today. They wanted you to get bigger quicker so that your lungs grow so they uped your milk to 17 mils per hour, 18 tonight, then 19 mils tomorrow morning if you were tolerating it. They were also talking about adding powder to the breast milk to help you to put weight on more quickly. Also mentioned that when you go home we may have to give you vitamin drops. You were taken off of CPAP at 10.30am this morning.
Jocelyn was looking after you tonight. Last blood gas at 3pm was 7.19, oxygen at 30%.
26th May 2009
Selika was looking after you today. You were put back on CPAP at 6.40 am this morning as your CO2 result from the blood gas at 6.00am was 8.82. Was told that you may need another blood transfusion as your
red blood cell count was low. CPAP was on 5 and oxygen was around 30 %.
As you had lost weight for 2 days they uped your milk to 20 mils per hour and they told us they may need to add breast milk fortifier to help you to grow quicker. Found out no transfusion was needed. Jocelyn looked after you tonight and Daddy had a cuddle with you.
Felt really sad tonight.
27th May 2009
Selika was looking after you today. Blood gas at 6am showed CO2 at 8.62. Now on CPAP pressure 4, oxygen 30%. Going to start you on Domperidone to speed up digestion in your tummy and help stop reflux. Milk at 20 mils per hour. Dr came and removed the tape on your operation wound and said it is healing nicely.
Tried off CPAP at 14.30 as aggitated until they done another blood gas in about an hour. Was told that if your CO2 goes up at all you would be put back on CPAP.
Rose was looking apter you tonight, not very nice. Blood gas showed CO2 was 8.12 at 7pm
and they said it was still ok for you to be off ClAP as your PH reading counter acted it. Very pleased. Your head circumference was 33.2 cm.
28th May 2009
Liz was looking after you today- she is expecting her baby in August. Still off CPAP. CO2 at 7am was 7.33. Milk now at 40 mils every 2 hours. Liz told us that if you stay off of CPAP then you would be transferred to Special Care then to our local hospital maybe
next week.
CO2 at 5pm was 9.11 but Liz said it may have been because you had been crying not long before she done the blood gas, so she was going to redo it. She also said it was best for me not to hold you as it was high. C02 at 7pm was 7.31 so very happy. Anna, who was an Indian lady, looked after you tonight. Oxygen in incubator at 28%.
29th May 2009
Liz looked after you today. Decided to put nasal tube in for oxygen so that you didn’t need to be in an incubator to get oxygen, you could go into a cot. Liz told me that the doctors would like to see if I could breastfeed you, so arranged to try at 11:30 am. Anna looked after you tonight. You were moved out of your incubator and into a cot! Was so pleased.
30th May 2009
Penny was looking after you today. Today you weighed 2.650kg (5lb 13oz). Your CO2 at 6am was 7.8 and your oxygen was at 70cc. Daddy took Chiara to Ruskin park while I stayed with you.
31st May 2009
Debbie was looking after you today-lovely lady. Found out that we may be transferred to Southend Hospital tomorrow afternoon if they can arrange transport and a cot.
1st June 2009
Liz was looking after you again today.
Came back from park with Chiara and you were getting transferred to special Care. Got told that you wouldn’t be transferred to Southend until Wednesday now as they didn’t have a cot.
2nd June 2009
Salve was looking after you today. Felt stressed out that Southend Hospital wouldn’t take you into their neonatal ward as they said they wont take babies from other hospitals, so you would be taken to their paediatric ward – Neptune ward. We were worried that you would catch something from one of the other children. Went to speak to Jude (one of the sisters in charge) but she told me that you weren’t ready to be transferred yet and that they weren’t happy to send you to Southend as you turned blue when you were distressed. She told us that you would be here for at least another 2 weeks then possibly 2 weeks at Southend Hospital. Noticed you coughing when I was with Salve so I mentioned that I was concerned. Salve got Dr Harry to talk to me. He said that you had had a lot of X rays so they didn’t want to do another one. He said they would only be concerned if your oxygen went up drastically, or if you went blue when you wasn’t distressed. Beth looked after you tonight. Daddy saw you go blue when you were crying, and your oxygen levels went down to 60. Esra looked after you today. Towards late afternoon and evening you were desaturating slowly when you were crying, rather than it quickly dropping. Your head circumperance today was 33.8 cm. Sarah from Channel 4 came to see you today.
3rd June 2009
Salve looked after you today. Dr Harry said it was ok for you to have another x ray as your last one was 2 weeks ago. Results came back ok. Colleen looked after you tonight. Today you weighed 2.850 kg (6lb 4 or 5). When I walked in tonight there were several nurses and doctors around you as you desaturated when you wasn’t crying. Jummy was the sister in charge tonight and came over, so did Dr Renee. Jummy changed your nasal tube in case it was blocked and they brought in an oxygen machine that went up higher-up to 250cc. Jummy and Renee told me that you would be moved to HDU tonight. Received a call from nurse Bianca tonight at
10.30 pm to say that you had desaturated again so they moved you back into Intensive
Care and you were put back onto CPAP, but they said it would only be for a short while. Daddy went up to see how you were while I looked after Chiara. Was told you were on CPAP pressure of 6 at 40% and back in an incubator.
4th June 2009
Went in to see you for the fist time in ICU1, nurse Christie was looking after you today. Was told you were anaemic and you had a hb of 10 when apparently it should be 14, so you were given 26 mils of blood. You were also given antibiotics in case you had an infection and a dextrose drip. Felt really upset today seeing you back in Intensive Care in an incubator. You were taken off of CPAP this morning.
5th June 2009
Christie was looking after you again today. You were put back on CPAP at 18.15pm today as your oxygen levels desaturated to 49. Dr Harry said he thought you needed a rest as your chest was going in quite deeply. Mel came up on the train to visit you.
Spoke to the surgeon who carried out your surgery- Adai Ajay and was told that something isn’t right. He said it might be one of 3 things- 1) severe reflux which they will do a contrast study to see. This involves putting a tube down with dye to see where it goes and if it is going into your lungs, we were told this would be done on Monday. 2) Was told there could be a block in the trachea so they would test by putting a tube
down for 24 hours. Or 3) It could be reherniation but Dr Harry told me that this looks unlikely according to the X rays as he could see your stomach at the bottom. Was told you would be having tests done all next
week. Nolette was looking after you tonight.
6th June 2009
Esra was looking after you today. Rang up this morning to see how you were and was told you were put back on CPAP pressure of 5 with oxygen at 20-30%. Was told you needed another blood transfusion of 43 mils as your hctc was 35.6 so they were giving you it this morning. Today you weighed 2890 kg (61b 602) so you’re up by 37g.
You are having 14 mils of milk per hour.
Feel so sorry for you today- you rarely get cuddles like other babies, you’re stuck in an incubator with the bright lights and the constant sound of the alarms and you are expected to sleep to get better. Feeling very sad and tired. Christie looking after you tonight. Spoke to Dr Ong today and Simon- the consultant.
7th June 2009
Esra looking after you today, Christie looking after you tonight. Today you weigh 2900 kg.
Was told that if you got any worse then you would have to go back on a ventilator.
8th June 2009
Neyan was looking after you today. You were taken off CPAP this morning at 10.00 am. Having an ultrasound scan this morning then depending on what they find, may not need to do a contrast study.
Cot is ready for you to go into if you maintain your temperature. Taking Chiara to doctors today about her cough. Saw occupational therapist Elane for first half with Daddy, where she showed us the best ways to position you. Also showed me baby massage. Had ultra-sound scan-was told it didn’t look like it had re herniated but there is lots of fluid around the lungs, and that we neaded to wait to find out if they were going to drain it off or not. Was told that they probably wouldn’t as long as your saturation levels (sats) remained ok. Maria looked after you tonight. Today you weighed 2.880 kg so you lost 22g but Maria said not to worry as they look at an average over a week. Took Chiara to the 1 o clock club today- was really good. Chiara done some glueing and glued hair onto a horse.
You got moved into a cot today. Anne Greenough advised to stop the breast milk fortifier today.
9th June 2009
Helen was looking after you today. Milk at 18 mils per hour. Spoke to Dr Nada who is a surgical specialist trainee. Was told that he needed to speak to the radiologist to discuss whether they feel a contrast study is necessary or not and whether they needed to drain the excess fluid around your lungs.
10th June 2009
Christie was looking after you today. When we called this morning we were told that you were moved to Special Care and that your nasal oxygen had been removed.
Today is the fist day that you breathed totally by yourself without any oxygen!
Thoko was looking after you tonight. Today you weighed 2.922 kg (6lb 7oz) so you had put on 32g.
11th June 2009
Beatrice was looking after you today. Went down with you to the first floor to have a contrast study done to check for reflux and reherniation of bowel into your chest. Nanny Marilyn came to see you and had a cuddle with you for the fist time!
Went to see Catalina to say goodbye as she goes back to Columbia on monday, thanked her for everything she has done, gave her a bottle of wine and exchanged email address. Met Danielli who is taking over from Catalina as Professor Nicholaides’ assistant.
Anna was looking after you tonight.
12th June 2009
Belinda was looking after you today. Having 44 mils of milk every 2 hours. Met with Georgina- one of the speech and language therapists. She done an assessment to see if you should be able to feed and breath at the same time. She observed me breastfeeding you and said that although you done about 3 sucks then a swallow and a breath when you should normally do one such and one swallow and breath, she said that it is to be expected of a baby with CDH and that you done really well. She recommended that I try for ten minites every other feed and she will reassess on Tuesday. Thoke was looking after you tonight. I helped weigh you-today you weighed 2.970 kg.
13th June 2009
Belenda looking after you today. Daddy went to Dawse and Jens wedding then came back in the evening. Breast feeding going well.
14th June 2009
Lucy was looking after you today and Belinda tonight.
15th June 2009
Gloria was looking after you today, and Cheryl tonight. Asked to bath you today but it didn’t happen as you were asleep after your feed and than it was too late.
16th June 2009
Mas was looking after you today. Rung up to find out if Jude Angel could get transport for you to be transferred to Southend hospital and was told that it wouldn’t be until Friday. Recieved a call back to say that they could transfer you today at 1.00pm!
You were transferred to Southand Hospital!
You were transported in a squad in an ambulance with nurse Roselle looking after you. You were in Neptune Ward, room 1 of Starfish at Southend Hospital.
I slept on a bed by the side of your cot.
Your cot had a monitor so that if you stopped breathing or if we lifted you out without switching it off, the alarm would go off.
17th June 2009
Doctors came round to see you and said that we could take you home! So so happy! And it’s the day before Daddy’s birthday….. best present ever!
Had two hearing tests- one was because you had been in special care for more than 48 hours. Both were fine. We were told that you had to have another one when you were 8 months old because you had been ventilated for more than 24 hours.
Bathed you for the first time today with Daddy.
We got taught resusitation
We finally got to take you home- we were so happy and relieved.
With special thanks for the expertise, care and kindness of the nurses, doctors and surgeons of Kings College Hospital, London. Without you, and the pioneering Balloon surgery you helped to make possible, we would not have our most precious boy with us today.
If you would like to watch the video of our foetal surgery and CDH journey please click on the link below.
https://share.icloud.com/photos/093rjwqtwT1BNGf35jwuXI4WA
With thanks to Sara Tibbetts and Aaron from The Wellcome Trust for the filming of this footage.
Nattale Norma 