Apple and pear for lunch with a side order of blue water

Today was so great. Im fact the last few days have been great. Benjamin had his first taste of Apple and Pear puree. It wa ssuch abig thing for me and turned out to be  abig thing for him too. It was so sweet to watch him try the food. Helen the SALT nurse sat with me and we tried the puree as it was to start with but I thnk it was too much for him. So we watered it down and he seemed to take that better. He licked his lips then had an expression of complete concerntration.
Feeding your baby is something you take for granted but when it comes to feedinga baby of 6 months who has never had anything in his mouth , you realise how much babies hae to learn and how everything is so new and scary. Benjamin did really well eating the tiny amount he did and we will be trying it twice a day to build up his swallowing actions.
Benjamin has aloso been introduced to water in a bottle. We put blue dye in it so we can actually test if its his belly by asprirating his NG tube. The only thing with blue water is that the doctors etc panic when they come over to see him as the last thing you want to see ona cardiac baby is blue lips!!
He doesnt take the whle teat in his mouth but he does lap at the water like a kitten, its so cute! Im hoping in a couple of weeks he will start to drink from the bottle properly and be eating a little more food. It will be fun trying it all.

Benjamin has had such a good week, he is now 10LB, finally double figures, and has started having baths again. He couldnt have a bath properlly due to all his lines and wires so bath time is one of my favourite days.
Benjamin is smiling alot more, he is interacting with people and fixing and following.
Mom helped with Benjamins last bath . It was fun sharing those times with mom. Justice decorated Benjamins Emergency Tracheostomy box and sat watching while I carried out a suction. He is such a brave intelligent lad.
Life is starting to feel normal again, as normal as it can be. He is doing really on his tracheostomy and adjusting well. I have learnt to change his dressings and tapes, I can suction when he needs it and Im more confident about getting him out of bed and holding him like anyone else would hold their baby.
Im hoping to be able to do floor play soon as well, and put him in his buggy. We also hope that he will qualify for a mobile ventalator called a nippy which would mean we can take him out of the ward. Can you imagine my joy when I heard that, I nearlly bear hugged the doctor.

The only down side is the doctors have told us that they plan to get us home and hopefully without the tracheostomy but it probably wont be for a while. They hope were home for Benjamins first birthday. That means we would have been in hospital a year, away from family for a year and most importantly away from Justice for a year.

We know that benjamin will come home well and I know the time we have spent away from everyone will be worth it.

Benjamin really is very small.....

I didn't really realise how small Benjamin was until I started talking to the lady next to us. She has been in PICU for  a long time adn her baby has heart issues. He is 3 half months old and weights 11 lb , Benjamin is 6 months old and weights 9lb!!!!! It really hits home when you talk to other moms.
Here's hoping he takes to solids ( purees ) and starts to meat up xxx

Forgot to say 3rd may 2011



GORGEOUS BOY

 Benjamin now has a flexi trachy, which if you look in the pics is a tube which sits much lower under his chin so he can move easier and if he needs a suction its easier to do. He does fall asleep holding it at times which is really sweet. Ill be having to change them very soon so im having to do some study and verbal checks with the nurses. Al full on at the moment again.

Tracheostomy and Purees 3rd may 2011

Well we have had a great few days with Benjamin. Since this tracheotomy went in he has been alert, much more mobile and seems so mu ch happier. I think he is still getting used to it as he does gag sometimes but generally he is doing really well. I still haven't had my Trachea training yet and I'm nervous but keen to do it. I saw the entry site the other day and it did make me feel nauseous. I told the nurse how I felt but she was pleased about it as it meant we would be safer as we wouldn't be so blasay about things.
Anyway he is so gorgeous and so sweet. He has developed the "Forrester stare" when the nurses get to close to him. Its very funny! I'm waffling again.
Benjamin is going to be on the tracheotomy for some time as well as his inatropes. He is on allot of sedation drugs so a plan has to be put in place to try and sort them out and take off 2 or 3 of them. His feeding still isn't at the optimum and his weight gain is stationary at the moment. There is a 3 half month baby next door who weights 11lb and Benjamin only weights 9lb at 6 months. It makes me realise how small he really is.
The SALT  nurse came down, she deals with swallowing and speech etc and she assessed his swallowing. He took water off a sponge happily and then she gave him a bottle and he licked the water from the teat. I was beside my self as I was so happy.She thinks trying the water fora few more days and then on Friday we will try Purees PUREES OH MY GOD AT LAST!!!! I cried , Mom cried and even Dave shed a tear.

The doctors plan to wean his ventilation so they can put him on a "nippy" which means me and Dave will be able to wheel him around the ward so he isn't sat in is cot for so long. I'm sure it will take time but it will be great. I'm hoping we have a  good summer and he can go on the mobile ventilation as there is a little garden by PICU which i could sit in with him.