A lot has been happening in little Islah’s life, here is an update from mum Toni.
Islah had her surgery for her PEG (Percutaneous endoscopic gastrostomy) it was a hard day but overall she did pretty well. The following day Islah wasn’t very good, she was very tired and weak from the lack of sleep and no food (Islah had to fast for over 30hours). After a feed, she was becoming more alert and seemed to be improving. Later that day she ended up vomiting 2 decent sized vomits which really terrified me because she was struggling and got very distraught. As it is really hard for Islah already to swallow or bring anything up it takes a lot of hard work so as you can imagine she was quite exhausted.
Lucky after having the NG tube taken out Islah had a big sleep and was back smiling. Since being home Islah has developed a cough as the days have gone on it has become worse. We took her to the doctor and she has a little bit of mucus on the bottom of her lungs so she has been very tired but still giving us that sweet smile. We have been using the vest (it helps clear the lungs) that Sally, Amelie’s mum sent us. The vest was first used by the beautiful Ellie who then sent it to Little Amelie and now Islah uses. Luckily these lovely ladies have done this for us as things can go from normal to really bad instantly and having equipment there and then is crucial.
Equipment is very expensive and more times than not there is a long wait to receive anything. For example a special car seat for Islah is $7’000 some of the equipment is funded but sometimes they can only fund so much which leaves us with a large amount of money we need to pay right away and with both of us home caring for Islah physically for every hour in the day and night funds are extremely limited and this too is frightening. We are currently trying to source a suction machine, a bed, a high low base and a car seat. At the moment we are hiring out a stroller while we wait for Islah’s stroller. The specialised equipment is crucial to keep Islah comfortable and it’s very hard to absorb what’s required and when but we are trying to work out what we can do in the meantime while we fundraise to make this easier for our beautiful baby girl.
Before Islah’s PEG, we had the lovely Kelly from Harmony Portraits offer to do some family photos for us. We got them back and I am so happy we were able to get them done they are beautiful and something I will treasure forever.
One of the things we have wanted to do is to have a naming day for Islah and we did just that on the weekend. It was a bittersweet but a beautiful day. We had almost all of our family and friends there to share the special day with us. It was full of love, support, laughs, tears and butterflies.
Myself and Cameron would just like to say a massive thank you to everyone for everything they have done for us we truly appreciate everything and are so overwhelmed by everyone’s generosity it brings tears to my eyes because people are just so kind and all the little things are making a huge difference in our lives at the moment. So thank you all so much!