23-4-2008 - BABY'S DIARY - Feb Updates

My mood while writing this blog: Ok

Update: DS's blood gases havent picked up like we expected, partially down to the lung disease, but they also feel that his heart isnt functioning well enough post surgery. Looks like we have another operation on the cards. It just feels like this is never going to end. On another note his father is in contact. First he claimed to want to be the best husband and father he could, less than a week later he is starting arguments, being insensitive and totally unhelpful. This kind of extra anxiety is the last ting i need. I just cant cope anymore. I want my son home. Now. I was so scared before the last surgery, and we managed ok, i thought i could finally breathe again. But, God is not being easy on us and now we have more to endure. Id always heard that preemies go home around their due dates, so i never anticpated staying in past his.

Im getting sick of other people too, always asking if he is home. If a newborn had major heart defect and lung disease you wouldnt expect them to come straight home, so why the hell do they expect DS to be able to!!!!! Ughh it just gets me so mad, surely i am the one who is most frustrated at being seperated from my son, everytime i have to tell people he isnt home yet i feel like they think he is 'weak' or failing in some way. I think thats what hurts the most. Because i have sat in hosp upto 10 hours a day for 3 months, watching as he fights the biggest of battles and over comes things i didnt think possible. Twice they have told me he wouldnt make it, and he kept on fighting. My boy is the strongest lil soul i have ever come across in my life. I dont care what any naive sheltered fools think, he is amazing and im so so proud of him!

AAAAAHHHHHHHHHHHHHH DSs father is a useless piece of @{}~ Ugghh hes been back on the scene for only 3 weeks, and already causing so many problems. I only get 5 hours sleep everyday (if im lucky) and im SO exhausted and in pain and im constantly running up and down to hospital (as i have been for over 3 months). DS has been very very sick (on a heart lung bypass machine), it is really 50/50 as to whether or not he will recover and survive at all, and his chances drops all the time. Even with all im dealing with his useless father is messing with my time and keeping me away from my boy in hosp and stressing me out so much. Every time i speak with him his insensitivity reduces me to wailing tears, sobbing my heart out - no exaggeration! Everyday he tells me a time to come home from hospital so i can meet up and spend time with him and DS's grandparents - and EVERY time he is late or meets me and immediately starts fighting with me, or most the time he doesnt even show up at all. Now he is flying off to India today - talk about bad timing!! I am SO MAD right now! Ugh i could just kill him, i cant cope anymore :( Someone distract me pleeeeeeeese!!!

OOppz can u tell i was moody earlier? lol well i guess i am just stressed n d hubby really pushes me over the edge. Hopefully things will get better soon and he will learn to be more sensitive to everyting going on! Hope everyone is doing well and enjoying their pregnancies and babies!

Yayyy! Yesterday DS did 2 straight hours breathing only on the nasal canula (although he was very lethargic for the rest of the day) ! I dont know if id written it up here, but about 3 weeks ago i was told that babies ventilated as long as DS have a very poor chance of survival, so yesterday was a real miracle for us. Well, still with the chronic lung disease he had to have ANOTHER open heart surgery. It seems to have done the trick as we can see by him managing just on the canula. As for the iugr/growth issues he cant take over 2oz without being sick but thats a concern in the shadow of the BPD and heart defects. Hes still on the ng tube feeds as his lungs and heart are too damaged to get the whole suck/swallow/breathing thing down quite yet. We are currently discussing trach/g tubing to get him home, but obviously i will not let him go through anymore surgery unless it is entirely necessary. Today he managed 30mins on the canula for every 4hrs - thats a total of 3 hours!! I cant tell yall how relieved i am. 3 weeks ago they said he wouldnt make it, now in true ~~ style he is proving them all wrong once again :) Thas my boy!!!