Day 48. What an amazing day it has been. I feel like today has been a milestone day for Jack. Im really not really sure if the doctors feel like he is making great progress as I do, but Im catching up with one of the consultants during the week so will get the doctors update on how they feel Jack is progressing. I arrived for Jacks morning cares to discover Jack had been moved onto midline CPAP. Im not sure if I mentioned last night that Jack had been twisting and turning his head in an attempt to move his mask off his face, and sometimes actually managing it!! So during the night Jacks nurse decided it was time for him to give CPAP a go. The CPAP was all ready to go as it was planned for sometime this week anyway. The main difference with CPAP from SIPAP is that SIPAP gives babies a breath but on CPAP they do the breathing themselves. They is a bit more to it and Jacks lovely and patient nurse explained it to me twice today but its a bit much for my jammed and fuzzy brain right now. Ill try again later in the week perhaps! Jacks oxygen is has been high at 60% but that is expected with the change to CPAP. He may get tired quickly and not be able to cope so would then go back on SIPAP for a while longer. Jack had already been on CPAP for four hours when I got there and was doing really well and his face already looked less squished. During his 10am cares he opened his eyes and had a really good look around and appeared to respond to my voice. I was so excited and managed to get a great video of him with his eyes open. I couldnt wait to share it with everyone so uploaded it as soon as I got home. Unfortunately Ive had to remove it now. During the doctors morning rounds it was decided that Jacks antibiotics could be stopped as his arm is looking so much better. Therefore one of the longlines in his legs could be removed. I asked if it would be possible for the TPN (nutrition) to be swapped into the newest longline so the oldest longline could be taken out as its been in since he was born. Initially they agreed however decided that because his milk is increasing and therefore TPN decreasing, the other longline would be coming out soon anyway, so there isnt any point changing it at the moment. The second longline was taken out this afternoon. It is so great to see one of his legs free of bandages again. I was really surprised how tiny the longline (which goes up a vain for the entire length of his leg to his stomach) is. It is barely thicker than a cotton thread. I find it amazing that they can feed that up a vain! The doctors also decided to increase his feeds by one ml, 8 hourly (instead of 12). At 12noon he started on 8mls and tonight at 8pm started on 9ml. He is still having a small about of bile in his stomach but usually it is milky yellow. Jacks stomach is still really big too. The doctors still want to push through it though and keep feeding. Hopefully the CPAP change of air pressure will help his stomach and he will have less air in his tummy/intestine. Jack hasnt pooed for three days either so may need to have a suppository tonight or tomorrow. At Jacks 4pm cares Jacks nurse changed his CPAP from mask to prongs. Just like SIPAP the mask and prongs are alternated to ensure there isnt to much pressure on points on the face for such long periods. The CPAP prongs put less pressure on his nose but are longer and go further up his nose. Jack did not like these prongs at all. He cried and cried. I picked him up (in his incubator) to try and comfort him but he was not at all happy. In the end his nurse had to change him back to the mask and he immediately calmed down. They are going to switch between the different size masks for now then try him again on the prongs later. Hopefully he will get used to them. Poor baby. This afternoon I had a lovely long cuddle. Jack was so great and didnt have any desats (breathing) or bradys (heart) the whole time. He just slept and was so peaceful and relaxed, and so was I! I didnt want to move but after almost four hours I really needed to go to the toilet so had to give him back. I was surprised how much quieter the CPAP is too. Its mainly the bubbly water making noise but the SIPAP is really loud with the air making a lot of noise. Tomorrow morning at 7:15am (an early start for me!) Jack has his first eye test. The nurse has advised me not to go as apparently it isnt nice to watch. However I really want to be there for Jack if he has to go through such an awful experience. I am really nervous for him. Firstly because I dont want him to be in pain and secondly Im worried about the eye drops upsetting his stomach and therefore his feeds. Just when he is finally getting somewhere with them! Fingers crossed this wont happen!! I am very overwhelmed and shocked at how many people are following our story and Jacks journey. We are so grateful to everyone for the support, prayers and messages. I only started this page because we were finding it difficult keeping all our wonderful friends and family up to date with Jacks progress. I was not a big Facebook user previously and not a fan of being very public so it is a big deal for me sharing this journey with so many people. I felt quite upset today when so many people at NICU were immediately aware of the video I posted this morning. I am a teacher and am very aware of privacy but all I wanted to do was share my joy of Jacks progress with everyone who has shown us so much love and support. I just wish that it could be taken that way. Sadly I have removed the video and for the second time had to remove images from this page.
Posted on: Mon, 13 Oct 2014 11:02:37 +0000
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