A miracle

Joel was back at the hospital today to be weighed and checked. He has put on 11 oz in 9 days. (equivalent to the weight of 11 pencils :) ) How great is that? He is looking so much better, his little face is rounder like it was when he was first born. He now has a new tube in place that will stay for at least 4 weeks. It is much better as it is secured with see through tape so we can see a lot more of his face. Hopefully it will stay in place and not need redoing as this one is a little thicker and Joel found it really uncomfortable as it was inserted.

What a great day. Joel is a little closer to the magic target weight of 6 kilos. He needs to be this before they will consider the operation for his VSD. We find out on Thursday if the VSD is improving or if surgery is the only option. For now we say, "thanks be to God."

We still have concerns.

1. He is still not breast feeding for long enough periods without getting tired or clammy.

2. He is struggling to digest the nutrient dense milk and needs laxatives ever day.

3. He is in discomfort and sometimes pain as he can't or struggles to 'go'.

Emily is doing well, we are about to formally embark on toilet training, she has been trying with some success but now we are 'seriously' trying!

Back to the cardiologist on Thursday at 2.30pm. You never know we may get another miracle!

We have so much more to smile about today.

The NHS

Many people have a variety of opinions on the NHS. Here is mine.

It is great. End of!
Well to give more detail we have had nothing but the best care for both Emily and Joel. When Emily has been in hospital we have been treated so well, with so much care and attention and this has been mimicked with Joel too. We have the best team of consultants, paediatricians, dietitians, drs and nurses all looking after us. We have community nurses calling us every other day, health visitors visiting and making sure that we are coping with the feeding, and our nurse from the ward making sure that we are ok and managing with all our appointments etc.

Emily has a chest infection. She is now on 4 different types of medicine to control her temperature, clear up the infection and to help her cough.

Joel is on 3 different types of medicine plus his special 100 calories per 100ml milk.

Thank goodness for the NHS, for the care that we are receiving and for all the medicines that are helping making our children better. We appreciate all that everyone is doing.

So whatever your opinion is on the NHS, mine is positive as we have had had nothing but good care and treatment (and its free! ...Well out of our tax but I don't notice that!)

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Just some pictures for those who have been asking for more. Do you think his face is filling out?

'Mummy.. I wasn't ready for my picture to be taken!'

Another update

His eyes say it all, the hand is comforting but not comforting enough.

Another weekend has passed and other chance to catch up on the 'Joel Chronicles'. He is a rascal! Last night he pulled his NG tube out so we ended up at the hospital today for a new one. Unfortunately the silk one hadn't arrived so he has another pvc one. New tube on the other cheek They did all the things they were going to do tomorrow. He is now 8 lb 3 oz but sadly he has only put on 2 oz in a whole week which is not good enough and he is moving further away from the acceptable line on the graph. So, we now have to double the amount of calorie rich milk he is getting through his tube. I also may need to breast feed him every 2 hours and express in between, ( I may not go out much!) His respiration rate is back up at the high end of the acceptable boundary which again is not great! The plan now is to see how he goes with this and review next Monday when he will get the silk tube. ( We don't want to go back again tomorrow for the the tube as he had to have a new one today and we don't want to hassle Joel two days on the trot!) We have to monitor his nappies as he is weeing a lot as part of his treatment for the heart condition ( medicine to reduce fluid,) but this causes his bowels to struggle.

We really do love him... he is such a great kid!

He has found his voice and his smiles (ish)

Not brilliant news all round. We were told today that it looks like the hole is not closing so surgery seems to be the only option. We don't have that from the cardiologist and he needs the echo scan to clarify, but on face value looking at the factors we have, it looks like surgery! Sad.On a happier note Joel is doing lots of cool things. Smiles, talking/noise making, moving his arms and generally being a great baby. He is loosing his hair and getting strange tufts here and there. What a cool cookie. On the whole it's all smiles here and Emily sends smiles to you all. (her teeth are all through!)

And one from Joel too!

Thank you

Jamie and I have been inundated with offers of help from shopping, ironing, cleaning, childcare, gardening, company, cooking and food. we have also been overwhelmed with text messages, emails, phone calls, cards, notes and letters telling us that people are thinking and or praying for us. Yesterday when I came home I was so excited to find that this bunch of flowers had been delivered to me with the card reading 'thought these might brighten up your day'. They did! I came home from hospital late last night after having to take Joel to be seen by the paediatrician (again) as he had not been going to the loo so needed medication to help him go and take away the pain to these still sitting on the hearth of our fire so, yes it brightened up my night too. Joel now has to have more medicine daily as the milk is too strong and his bowels need help!

THANK YOU to all. You may not think that a text can make a lot of difference but it does. Also, I am so far behind in replying to them as feeding and helping Joel as well as looking after Emily can make my day pretty hectic. It also makes Jamie's evening slot between 5 and 8 hectic too! So if you don't get replies, wait they will come soon.

We appreciate you all, we do believe that Joel will get well and that this is a spell of time of waiting for answers. In the meantime we do know that God is with him and us and that he can and will help in whatever will come our way.

On another note...

Happy Birthday to my brother Delwyn. Twenty fgive years old; Wow! you make me realise my age! Also happy fourth birthday to Lily Knights. We hope you had a lovely party and that your big sister was extra kind to you on your special day.

Another hurdle cleared.

Today we went back to the hospital to find out how Joel is doing with his weight gain. He needs to be at least 6 kilos before the cardiologist will consider surgery (if he needs it). He is currently 3 and a bit kilos so he has a long way to go. The good news is that he put on 2 oz ( about the weight of 2 pencils) in the last week, the not so good news is that this is not enough. We are now feeding his calorie rich supplement through a tube that goes straight into his stomach to see if that will increase his weight and take away the tiredness of breast feeding. His heart will not have to work as hard for the calories! It was awful listening to him crying as the nurse 'passed' the tube, but she was so gentle and kind as well as professional and reassuring that without this tube Joel will not thrive and become a healthy little boy. We are glad that today is nearly over, that we have learnt how to feed our son in this new way and that we have felt a calmness and a sense of peace about this situation. We know that people have been praying and thinking about us all over the world and we know that whatever the outcome God is with us and with Joel. (I found it interesting at the supermarket where lots of people were second glancing Joel, but this is real life now and it will be like this for at least 5 weeks.) Next week we go back on Monday for a silk tube to be inserted which will stay there for 4 weeks.

Emily being Dr Emily and taking Joel's pulse.Baby Annabel has a poorly heart too and needs her milk in a tube too.Baby Annabel is the same size as Joel, (hoepfully for not too long!)

On a side note, Jamie went to choose his bike this weekend. He pooled his birthday money to buy the bike, helmet and child seat. They had fun this afternoon out and about in our neighbourhood.

Jamie thinks that Joel has started to smile so here is a piccie of a half attempt. He is such a great kid, so placid and fun to be with and we know that soon the tube will be gone and we will be back to seeing all of his face. Until then we will do what we can to help him be healthy and strong.

Update

Well...today we went back to Stepping Hill Hospital to find out how Joel is doing.

Joel has not lost any weight but, he has not put any on either. We have to go back on Sunday too have him weighed again. The Dr is not sure if the diuretics are causing him to loose too much fluid or if he is loosing calories with inefficient feeding because of his murmur. He will know more on Sunday.

Thank you for all the well wishes, messages and prayers. We are OK, trying to get ourselves on our feet with the start of term, Emily at Sarah's, housework and life in general. We appreciate all the help and support we are receiving- without it I think it would be carnage at our house!

It's been a long day.

What a week!

(Excuse the dummy, but it has been a much needed comfort as he has been struggling to feed!)

Joel and I have just come home from 4 night stay in hospital. Joel's tummy button was oozing and sticky so we went to the dr's. The GP listened to Joel and diagnosed a heart murmur or hole in the heart. She sent us to the hospital straight away where Joel had to undergo a lot of tests. So this is it in a nutshell.

• He has had an echo, an ecg, antibiotics to treat the infection, diaretics to reduce fluid in his lungs.


• He had a nasty septsus? infection.


• He is struggling to feed and not gaining weight.


• He has a hole in his heart half a cm long (a moderate size) inbetween the two lower chambers of his heart.


• The hole is allowing liquid to flow back and forth and flood the lungs.


• The hole may close over time or require surgery once he gets to 6 kilos.


• Joel is using too much energy and calories to feed as his heart is not working well and he is struggling to feed, so he is not gaining weight. If Joel does not feed well and get bigger he will need a nasal feeding tube in order to prevent the expending of energy on breast feeding. For now he is have a high calorie bottle as well as breast milk to see if that will increase his weight quickly. We will find out on Wed if he is gaining weight.

We are worried and anxious but we know that this will be resolved and that Joel can and will be well, it just might take a little while to get there. We have been aware of lots of well wishing and prayers and we want you to know that we have sensed God with us.

Little miracles this past week...

1. My parents were here to look after Emily and help her stay in her routine and free Jamie up to be at the hospital.

2. The paediatric cardiologist who does a clinic once a month at our hospital had an appointment available on the Thursday and gave Joel his echo without having to transfer him to a hospital much further away.

3. The dietician is a Christian and really uplifted our spirits when we felt low.

4. Joel and I had our own room and we were treated really well. (One of our nurses was the mother of one of his students!)

5. The GP finding the heart murmur that we were not aware of.

6. Emily has coped well and has been very patient with us as tired parents as well as sympathetic and loving towards Joel. (As much as a 2 year old can be)
Well that has been our week. Joel is a little frail and has low immunity but when awake he has big bright eyes and great little facial expressions. He is a great kid. We are waiting for Wednesday to arrive and hoefully he will be getting bigger and making progress to get better.
It is Jamie's birthday today and we managed a cake but no gifts, he tells me he would like to celebrate his birthday on Saturday with a Manchester United win!