NOAH IN THE BATH

No tube!! 13 weeks old - 3 corrected

July 24th Noah has had his tube out for 1 week now and has put on 100 grams over the week so he is doing well. The first few days he lost weight but the last few days he has put on heaps. I spoke to the Paed again and is he is happy with Noah's gains and wants to see now he is of decent wait if he picks up his gains to more a normal rate. The head scan was not so good they hope it is a benign cyst but wont know till last this year when he has another scan to see if it grows. Heart seems ok will review that next month and hopefully the rhythm is back to normal. Today he is 2920grams (6lb 4oz) he is almost the same weight Keeley was at birth. He is growing out of his 5x0 clothes and starting to fill the 0000 I think the cloth nappy makes him bigger but is so nice he can wear normal clothes and I can start to buy cute stuff again.

Neonates Professor

16th July Yesterday was our first appointment back with Neonates and finding out what the hell is going on. Prof Haslam was in cause out normal doctor was on holidays. He was deeply apologetic that Noah had been put on Rose Ward and said to call him next time anything went wrong because they were not informed and he is coordinating his care. He said that the nursery is still Noah's place to go and don’t let the tell us otherwise. He also couldn’t see any results in Noah's file from the ECG he tried to contact Dr Kelly but he was in surgery so he said he will get to the bottom of that before we next go in. He was very mad at the staff and they way we have been neglected for so long. He also read the report on the cyst and said he needed to see the results himself as he has had much more experience. He said no matter what the outcome doesn’t change because they cannot treat it or remove it so probably re do the test in 3 months and watch Noah's right side motor skills to see if there is any issue. But there is nothing they can do. He was happy with Deppas care for the eyes. He suggested we take the tube out of Noah nose and try breast feeding him 3 hourly and see what Noah can do. So we have stopped the polyjules and gavages. I am so tired from feeding every 3 hours on the dot and Noah is so tired also cause I am forcing him to feed and he is tired from being woken up and tired from working so hard. But so far he is doing well and getting milk in each time. I am very proud of him for trying so hard and proud of me for tolerating 3 hourly feeds when they go for nearly an hour each feed it makes sleep impossible. He was also put on more vitamins and iron for Vit D deficient and anemia. Am going back tomorrow to see Professor Haslam for a review and get the results from the head and heart. Will also have a weigh and get back the forms for disability pension for Noah too. Will be interesting to see what happens we are crossing our fingers the tube stays out and we can progress with just breast milk with no additives. Am feeling very positive.

More Results- Cardiology

More Results

July 10th – Thursday

I rang the cardio department yesterday to cancel Noah's appointment which was sent out presuming, I said it was mistake and the referral had been met when we were an in patient so we didn’t need it. They said they would get the specialist to call us to confirm we didn’t need the appointment. He didn’t call and today I rang at lunch time to confirm I wanted to cancel the appointment once again they said they couldn’t and Dr Kelly would call soon. In the afternoon the cardiologist called to tell us the results from the ultrasound (ECHO) seemed ok but because Noah is so small and was crying the film was not 100% clear so some other time they would re-do it. He couldn’t see any abnormalities but it is common it needs redoing it if the child is upset as it makes it hard to photograph the heart. I was open to that idea and tried to say we would keep the appointment and tried to say good bye. He stopped me to tell me that the ECG had not come back normal at all and was not within normal limits. He asked us to come in and discuss and re test the ECG after Noah is 4kg so they can get a better reading. He said the ECG showed signs of weakness which can lead to arrhythmia, seizures, blue episodes etc. We need another ECG and tests done but the cardiologist and I agreed that the head paed would make that decision when it should be done or to leave it till the 7th September. He told us the symptoms to look out for and any suspicions call and ambulance straight away. He was very reluctant to leave it so long but since Noah has other issues and the next lots of tests can be invasive he will speak to the paed. I have decided to not push the heart too much and with hold vaccinations for longer. The cardiologist said we didn’t want to stress Noah's heart just in case so I am now more cautious of what he has to go thru. I expect when we go next week to see the head paed we will get an idea of what there priorities are and start testing.

National Prem Day

NATIONAL PREMMIE DAY

31st July 2009

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Saying thanks for our tiny babies and the people who look after them

Weight Graph

Noah has done well in the last few weeks we bought our own scales to save us trips to the hospital for his 2/7 weights got a real bargin off eBay. Below is the graph we use to plot on his weight. The pink line is the minimun amount of weight he is suppose to put on per day. So his starting weight was 1450grams and today should be 4180grams (min 30 grams a day is healthy range) His actual weight is the blue line which is 2685grams (1495 difference) he is still classed as failure to thrive. His NG tube is still in and he still requires 3x gavage feeds with extra calories in it.

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Today was the first time since we have been home that he has put on more than the minimun amount. So proud of him. Will be seeing the neonates team on the 15th for a review and eyes done at the end of July. Physio in 8 weeks and cardio on the 7th Sept. Am hoping for the gavage to come out soon.