Harry’s Blog

Harry’s rough start to life…

We felt when Harry’s was born it would be good to keep a record of those difficult days and months, our thoughts and concerns as we ventured on our journey. So Harry’s blog was created. As we look back to those early days and where we are now, its hard to believe that our “little man” as he is affectionately known had such a rough start to life.

We hope and pray that those of you that read this and who may be experiencing some of the fears we faced will find comfort and hope is our story….

06/07/03

Harry is now 14 weeks old and weighs 8lbs 7oz and is doing well.

25/05/03

Harry is now 8 weeks old and weighs 5lbs 3.5 oz and is doing well. New photographs have been added.

24/05/03

Harry is now 8 weeks old and weighs 5lbs 3.5 oz and is doing well. He receives weekly visits from the hospital and health visiting teams who are very happy with his progress. He has maintained the 4 hourly feed cycle, which means he is only waking once through the night.

Although, we have had a few issues with Shannon since bringing Harry home, we appear to be turning the corner.

I apologise for not updating the photographs as I would have liked – but I’m now fully back at work and have been away each week.

16/05/03

Harry turned 37 weeks today and had his first visit from the health team from Hitchingbrooke. Although, he is settling in ok, we have experienced a couple of concerns relating to feeding and his temperature, which we have discussed with the team. Due to him being premature, he is still unable to maintain his body temperature and we have now turned the heating back on and the temperature up. No apologies if arriving at the O’Shea household and it’s like the tropics – this will be the case until he reaches his due date. (6 – 9 June) Where we are told he should have settled down and be in control.

This is also related to his feeding and the ability of putting on body fat. So we are using both Fi’s milk and formula to assist with this process.

He receives daily the following supplements iron, folic acid and a combination of vitamins.

Apart from the above we are all doing ok – Shannon seems to suffering from the “second” child syndrome, more so when Gary is away, so we do have some challenging moments !!

14/05/03(updated 14.:50Hrs)

Harry is now home having left Hitchingbrooke last night, even if earlier than expected at 36 + 4.

He is doing well and behaved himself on his first night, waking only once, and may it continue!

If you are intending to visit please call first, as mother and baby could be sleeping, and we will be asking you, as advised by the hospital, to santilise your hands prior to cuddling Harry during the next few weeks.

A big thank you to all of you for your prayers, support, encouragement, much needed food, ironing and especially for looking after Gary !

Due to his age, infection is still a concern and although we would love to see you , any hint of a cold – please, plan your visit for another day!

13/05/03(updated 00:18Hrs)

For one so small, Harry is the first person to wear Shannon out after his Saturday night activities. Monday morning saw the first signs of “teenager” syndrome setting in – Shannon could not be roused from her bed until 9am!

The weekend has come and gone and Harry is now ready to be discharged.

Harry has put on weight and is now 2.217 Kgs (approx. 4lbs 15oz) and is doing really well.

This evening will be our last official visit to SCBU, but not our last, as we will be saying farewell to all those at the hospital that have been our extended family for sometime and though we are really elated to be bringing Harry home. There is a part of us that will miss what has become our second home and the sea of familiar faces, once strangers, that have shared our ups and downs over the last 8 weeks, without their love and support Harry would not be with us today.

There are so many to thank and too many to mention – Brenda for making “Nurse” Shannon one of the team, Christine for being supportive in those early days, Hilary for making the nights such a hoot, Jeanette for the constant reassurance during those anxious moments and Harry’s milk lollies, and Dr Hilary Dixon for taking the time to explain those technical matters and making Shannon so welcome. Mr Richard ” Vidal Sassoon” Mills for hair styling, Sue (Leeds) for nominating Gary for the night feeds, Caroline for the additional words of wisdom concerning Shannon !! Sue, Alison, Anne, Fiona, Kate, Allison, Janice, Marion, and so many others.

A new chapter begins……………………… for the team on SCBU regular updates will be available – Watch this space!

09/05/03(updated 13.40Hrs)

Harry condition remains stable, he has increased in weight over the last few days to 2.175 Kgs ( approx. 4lbs 12oz) and has now reached 36 weeks.

His blood count is up and the likelihood of blood transfusion is slim. Feeds have increased to 60ml/4 hours.

We are all staying over at the hospital on Saturday night as part of the preparation process in bring Harry home. This is a very exciting moment – but is pretty scary too as we take over full responsibility for his care , no machines monitoring his vitals etc. If this goes well the hospital intend to discharge Harry next week.

Harry met his Nana (Newcastle) last night who had flown down from “up-north” to visit her Grandson prior to going on holiday.

05/05/03(updated 19.35Hrs)

Harry’s condition remains stable and his weight has increased to 2.211 Kgs ( approx. 4lbs 10oz). He appears to be very contented and has now come off his Apnoea unit, which is very big step, in the right direction. He is feeding well and is now up to 52ml/4 hours.

We should have his final MRSA result and an updated blood count tomorrow.

04/05/03(updated 23:30Hrs)

Harry’s condition continues to improve day by day. We are now in the progress of putting our discharge plan together and the hospital staff expect that Harry will be leaving them within the next 3 weeks. Although, this is a very pleasant surprise – it brings new anxieties and concerns, which the staff assure us is natural and they will do their utmost in making the transition as easy as possible.

We will be expected to stay overnight next weekend to allow Fi to be there during the night feed period, and during the next few weeks will be instructed in administering Harry’s drugs and a number of other things before we are discharged.

We arrived on Saturday, to be informed that we could take him out for a walk around the hospital grounds. It was a great family moment, but Harry was poked ever now and again, just to make sure is was still with us! (Nothing connected or bleeping)

His blood count remains low – but as each day passes the likelihood of a transfusion is reduced. The doctors are happy with his progress and he is feeding very well.

02/05/03(updated 17.34Hrs)

Harry’s condition continues to remain stable with his weight increasing to 2.02 Kgs (Approx 4lb 8oz), 7 oz ahead of his initial birth rate over the last 7 days.

The doctors have decided for the moment to hold off on the blood transfusion as his blood count appears to be increasing, but we will get a greater steer later today when the new results arrive back.

His second batch of MRSA results arrived back to day as negative – so hopefully we will have him out of solitary confinement next week.

He is feeding well and appears to be very alert when a wake.

01/05/03(updated 00.02hrs)

During the last few days, Harry’s condition has remained stable with his blood count increasing to 8.9. The target is 12 and this small increase could be a sign that his own bone marrow is beginning to kick-in. If the trend continues in Harry’s favour then a full transfusion will not be necessary.

His feeds have increased to 51ml/4 hours with Fi being requested to attend hospital more frequently to feed Harry.

The 1st of the 3 sets of swab results relating to the MRSA infection were returned as negative – but before infection control is dropped, Harry must have three negative results over the next remaining 7 days. This means that infection control for us as a family during visiting remains in force.

Harry had his first bath this evening.

27/04/03(updated 18.54hrs)

Harry is doing well and is stable. His feeds have increased to 38ml/3 Hours and this demand is placing a heavy load on Fi!!

Harry is pretty anaemic at the moment with is blood count down from 9 to 8.6 over the last few days and if the current trend continues the doctors will need to complete a blood transfusion. Due to the lack of good veins this is no easy option at the moment and we’re ever hopefully that more veins will grow.

Fi has recovered from mastitis and in currently being treated with medication as she is now MRSA positive.

Harry reached the 34 week mark on Friday.

25/04/03

Harry’s condition is stable and over the last 24 hours has ceased having Vancomycin due to his head camula failing. The decision was made to discontinue the antibiotics as he had only 3 more doses to go and the fitting of the head camula as this is a little distressing for Harry,

He is looking pale and not his active self, an indicator that his iron levels are low. If he can increase his weight he will be given iron supplements to increase his haemoglobin level rather than the option of a blood transfusion.

Harry’s eyes have been tested for Retinopathy of Prematurely (ROP) a condition that effects the retina’s of premature babies. Harry eyes are fine.

24/04/03(updated 16.21hrs)

Harry’s condition remains stable, although, he remains in isolation due to the MRSA infection. He is on his final day of antibiotics and will have a swabs taken in a few days to see whether or not the infection has been treated.

There is still some discussion to whether or not Harry will require a blood transfusion and I guess the doctors will make their decision in due course.

Fi’s infection is responding well to treatment and will continue with the course of antibiotics until complete.

22/04/03(updated 20.45hrs)

Harry is half way through his treatment for MRSA and is making good progress. His feeds have increased to 37ml/3 hours. Fi and I are getting more involved and confident is caring for Harry during our visits and this will included changing and cleaning him, tube feeding to disconnecting and reconnecting of monitoring equipment – this sounds far more impressive than it really is!

All being well, we expect to have Harry home in the next 6 weeks or so.

Unfortunately, Fi has got mastitis which has not helped the current situation and is being treated with a course of antibiotics.

20/04/03

We arrived today to find Harry in the sweetest outfit chosen by the staff and a handmade Easter card with his foot print in it, which had been prepared by the night shift. Where do they find the time??

Harry christened Daddy today while being changed. Daddy was quite impressed that something so small could wee so far!

Harry continues to improve and has increased his feeds to 32ml/3 hours and was weighed today @ 1.96 Kgs.

19/04/03

Harry continues to improve and has increased his feeds to 24ml/2 Hours. Vancomycin will continue to be administered for the next 7 days. He looks healthy and gives the nurses a run for their money at changing time! During a change earlier today he decided to wee all over his bedding, cloths, Christine his nurse and Fi later in the day! So, Harry appears to be back on form.

Harry met today his Auntie Mandy & Uncle Howard who he has heard a lot about from his big sister, Shannon. Shannon enjoyed showing Alex the playroom.

18/04/03 (updated 22.40hrs)

Harry has managed to maintain his temperature without the need for an incubator and was transferred to a cot this afternoon. However, due to the need to administer his Vancomycin a head camula has been implanted to assist with the delivery and this is the only line he needs. He continues to be monitored for pulse and oxygen saturation, but as he improves the need for this is reduced. Due to the nature of premature babies, Harry will remain connected to Apnoea unit during the remainder of his stay.

He is now off TPN and is being tube fed his milk and weighs in at 1.9Kgs (4lbs 2oz) a 75 gram increase over his birth weight.

16/04/03 (updated 23.40hrs)

Harry is unwell due to a secondary infection, MRSA and this is being treated with a two week course of Vancomycin. The doctors have informed us that this should clear up the infection totally within the given time frame. The complication to this treatment is the need for lines to be placed into Harry’s veins and this is getting increasingly difficult due to the amount of lines placed in him over the last few weeks, and we have been informed that a line may be placed into his head or via a surgical implant. As parents the thought of this activity is very distressing and the high & lows that follow are emotionally draining.

Although, this seems frightening and we seem to move two steps back for ever step forward. We know that Harry is in the only place and he continues to be a strength to us all.

His feeds have increased to 23ml/ 2 hours and the nurses comment on how well he looks.

15/04/03

Harry has been transferred into an incubator in special care and is looking really well. It was confirmed today that his infection was due to the long line and was a common skin bug.

He has increased his milk intake to 11ml/hour and becoming less dependant on TPN and is now off antibiotics.

14/04/03

Harry remains in intensive care and is responding to treatment. If his current trend of recovery continues, we should see Harry transferred from intensive care to special care within the next 48 hours or so. Lines for the various drugs continue to be a cause for concern and every effort is being made to increase his milk intake to reduce his reliance on the drugs. The poor chap has run out of places for the lines to go!

Milk feeds have increased to 6ml /hour. (updated 21.20hrs)

13/04/03

The last 24 hours has been tough, with a touch and go situation with Harry. Harry has responded well to treatment and remains in a stable condition in intensive care. He is looking much better and hopefully within the next 12 hours or so will be transferred back to special care. Lines for the various drugs continue to be a cause for concern, as long lines are out due to the infection and he must feel like a pin cushion – but is beginning to fight back! (updated 12.00hrs)

12/04/03

It has been confimred that MRSA is the cause and vancomycin is the treatment via IV.

Harry’s condition has got worse over the last 6 hours and he has been moved back to intensive care. He has an infection caused by the long line used to administer TPN and is very ill.

He has been given two doses of antibiotics to assist in fighting the infection and is back on the ventilator due respiratory problems. He is expected to have a lumber puncture later this evening to diagnose the problem further.

He is off milk until he stabilises and is back on 100% TPN, plus a few other things. (updated 18:00hrs)

Harry’s condition has got worse during the night and he is quite ill . It would appear he has an infection and the doctor’s are treating him with antibiotics. A decision will be made later today whether he will require a blood transfusion and move him out of special care to intensive care.

11/04/03

Harry has been quite poorly over the last 48 hours and he has stopped breathing on a number of occasions. This as parents is very distressing but appears to be a normal condition in premature babes. However, there is always an underlying cause and this could be either an infection or Harry’s is not able to tolerate the increased milk feeds. Blood taken over the last 24 hours will determine an infection – but as this appears to coincide with increased milk feeds, this is more likely to be the cause (?). SCBU have therefore reduced his milk intake back to 2ml and increased TPN to 10ml. All in all Harry’s is settled and most importantly hit the 32 week mark.

10/04/03

Harry is stable and is beginning to take milk (3ml) every 4 hours in addition to his TPN (Total Parental Nutrition). His weight has reduced slightly to 1.6 Kgs (3lb 12oz) but this is to be expected. Although still quite poorly the staff are happy with his progress and he gives us all a little fright now and then – I guess he’s just keeping us all on our toes.

Fi will be discharged on Friday (11th Apr) and has moved into accommodation in SCBU. She will be returning home at the weekend and this new chapter will bring new emotions and challenges for us as a family. Apart from the 40 mile round trip to and fro from the hospital on a daily basis, we will be leaving Harry without one of us being present at the hospital for the first time!

08/04/03

Harry has improved over the last 24 hours and is off phototherapy for the moment. His breathing has improved and they have transferred him to an incubator, just like the ones you put eggs in! They expect Harry to be in this unit for the next 7-10 days. It’s hard to believe he is only 31 + 4 days old. Fi and I managed to get a cuddle with Harry today, which has made a big difference to us both.

07/04/03

Harry is still poorly and is responding well to phototherapy. He is spending more time off the ventilator and requires only oxygen.

06/04/03

Harry has become poorly over the last 24 hours and hopefully with the right treatment will improve.

04/04/03

Harry is doing ok – but has some improving to do. SCBU are happy with his progress.

03/04/03

Harry is doing fine and managed to breath for a few hours unassisted.

02/04/03 Harry was born !