23-4-2008 - BABY'S DIARY - March updates

My mood while writing this blog: Ok

Over the last 2 days we've got DS upto 1 hour canuala to every 3hrs - we are heading in the right direction! Im glad i pushed to avoid the tracheostomy, although its not totally ruled out yet. Its so great being able to hold him with less tubes etc. His father is still away in India, i cant quite believe it. During the open heart surgery he was in France, now he is all the way over in India after only spending 2 weeks back at home :( Im starting to wonder if theres any point in staying with him. Im sick of leading totally different lives, hes out travelling the world whilst i care for our son night and day. It just isnt fair. Well, at least i get to feel the joy of my wee mans progress.

TODAY IS MOTHERS DAY HERE IN THE UK, SOO HAPPY MOTHERS DAY TO ALL YOU WONDERFUL MOMMIES AND MOMMIES 2 BE :)

March 3rd

Just an exciting wee update; for the last week or so we have been 'dry'/ non-nutritive b/feeding. Basically i express and then we feed it to him through his tube as normal. Bt now whilst hes getting this food he gets to suck on me at the same time, so that he associates breast with a full tummy. Hes been doing well and sucking stronger each day. Well... yesterday he was taking a few drips straight from me at each feed...and today....he actually breast fed properly for the FIRST TIME!!!! After let down (still too powerful for him yet), he got a few minutes of proper feeding! Woooohooo im just so excited! Ive been expressing for nearly 4 months now, several times my supply has dwindled to nearly nothing, ive been swollen and sore and exhausted, ive lost toooo much weight and been close to giving up. Infact only last week i was going to stop as i just couldnt handle that fuking pump anymore. Well im soo glad i didnt - finally it has all been worth it!! :)

10 March

EXCITING UPDATE NO.2 - DS took his first full 1.5oz bottle :) He has reflux & is still tiny so he gets about 1.5 every 2 hours. Its working pretty well because hes awake 80% of the time hes due a feed. Im a lil pissed the times they wake him just to eat but its really really important because of the IUGR & growth issues. He now gets offered bottle or breast(if im there), for all his feeds between 7am-7pm! He manages upto 1oz each time and gets the rest by tube. I cant believe how well hes doing! When he gets weighed on friday they will be increasing his feeds & length between them dpending on how much he has gained. Heres hoping hes gained alot so they wont need to wake him to eat anymore!

We also got last weeks blood tests back and they were all clear and good. His various nutrient levels were all ok, he jus gets a lil added to each feed. His white count levels came back perfect in the normal range! Im so glad they wont be stealing anymore blood from my boy! From now on all he has is the NG tube, heart pulsox monitor & breathing help! A huge difference from the 10+ tubes, wires and monitors hes had on for the last 4 months! Im so proud :)

On another note, papi is back from India, we kinda had a lil 'accident'. From the pains ive been experiencing (i have PCOS) doc thinks im ovulating so we are at risk for another pregnancy. Soo im kinda excited to think another baby may be on the way. Im due at the Gynaecologist on 25th March so hopefully then il get a test & some clear answers about my pcos! Papi is still out of the country with work for 3-6 months each year and i dont want our kids to grow up without their fathers constant presence. Id love another baby now but i think becos of my CFIDS, Fibro, arthritis, spinal fusion and caring for DS, i would need alot of help during the pregnancy and hubby just isnt helpful enough and i wouldnt want out kids missing out on anything becos mommy is ill and daddy is too busy!

12 March

Got called upto hospital at midnight last night DS had to go back on the ventilator. Papi has done a disappearing act & i couldnt even find him to get him upto hospital. They think maybe DS just got tired out from all his recent efforts, his chest xray showed nothing sinister so im hoping he will be back off the vent in the next day or so. Im praying this is just a lil blip on our journey to coming home.

Mar 14; Thanks for all your messages, sorry for not replying individually. Im happy to say DS is off the ventilator after 40 odd hours. I stayed with him whilst the sedation wore off, hes back on tube feeds for 12 hours to give him a break and was happily sleeping when i got came home at 1am. I guess we just need to take things a lil slower again. Ugh im missing him soo much right now its unreal x

March 17: DS took a funny turn yesterday, not sure why it happened, but we were giving him a bath and he started to turn blue and stop breathing :( He had to be bagged to kick start him again. It left me in tears for the rest of the day. Im so confused as to how that happened, and im so scared because it came on so quick. Hes back on cpap now. I spent 5 hours with him this morning (after a sleepless night) and he is ok now. If he needs sedating and put on the vent he might never get off it. The trach op is in my mind again, but even that doesnt breathe for him. Im praying he will manage on the cpap and get stronger again. Its so hard, because only last week i was so impressed and excited about how well he was doing, b/feeding and everything. Now this is happening. Il be going back again after ive had a lil rest and some food, i feel so selfish for even wanting to do that. I HATE being apart from him AT ALL. I know i need to keep well for him though. Going to speak with the consultants again and see where are options are from here, hopefully he will keep strong on the cpap and we can just work our way up again.

21 March; Not much happening here, which is always a good thing! DS is still on his meds and doing ok. Hes on 4 hours canula per day & 2 feeds by mouth now - we are building it back up again. At his best he was doing 14 cpap and 10hrs canula. He lost abit of weight last weigh in, due to all his hard work. Im going back for this afternoons weigh in and heres hoping hes gaining again. He still has reflux and isnt managing a full 4oz yet. What age did yall babies start taking 4oz feeds? Ive been staying away at nex place for the last week, but spent most nights waiting up for hubby to come and join me, he seems to have an aversion to coming home before midnight (if at all?!!). I was just so disappointed as i thought staying elsewhere would inject abit of romance into our relationship, how bloody wrong was i! Hes avoiding coming anywhere near me, its SO depressing i dont think hes attracted to me at all anymore. What man would give up a booty call to go to work?!! Sometimes i feel so hopeless, my partner is so self absorbed and obsessed with making money, its all he cares about. It makes me so sad that he would rather go out to work than come to hospital or come home and hold me after a hard day. I dont think a selfish man can make a good daddy - what do you think? Im getting really sick of coming home to a lonely empty house, ive no one to share DS's progress/news/fears with and its really tough. Im back home at mine now, im so relieved as the extra travel was really hurting me, my knees are swollen and my legs & spine are pretty stiff and locked up. Hopefully going to get some more super hugs from DS later today, hes been so sleepy all week, although i think it might be the meds. Hes outgrown his preemie clothes and modelling his newborn stuff wonderfully :)

MAR 22; DS had his lungs suctioned again today and is doing better for it. I feel so bad for my lil man, he has to deal with so much. He did 6 hours in total on the low flow canula over the last 24hrs; i felt like i had to really push to get them to give him that as they wanted to do more canula but every 8 hours as it is less work for the nurses! Sometimes i feel like we would get more individualised treatment if we were on private healthcare or in the states! He is taking 3oz every 3 hours now with the hi cal fortifier and managing it well. He takes 4 of those by tube and the other 4 he takes as much as he can by mouth and the rest by tube. We had nice cuddles today which helped my milk supply, although we didnt get any b/feeding. DS is still pretty tired, he is used to the treatment he needs but as time's going on i feel he needs more stimulation and playtime and isnt so happy to just lie there. Saying that he is such a good baby and quite content to just look around and sleep! Im feeling like he is being neglected and im not sure what else i can do to make life more normal and happy for him? When i see other babies it reminds me how poorly he really is right now. Im feeling pretty down and stuck in this rut right now. Well, tomoro is our first easter together! im excited! im going to get a hold of some drawings and easter stories to show n read him tomorrow :)

MAR 25; Had to move a whole house full of stuff from midnight till 4am, then in hospital with my lil man from 6-8am, then i had to to have my heart monitored for 2 hours, then i had my gynae appointment (thats another long and dpressing story about our next baby), then i had to go to the doctors, then i have just spent 3 hours in A&E. Ahhh i am SO exhausted and in alot of pain.

DS is still going between cpap and low flow oxygen. It still helps whilst sleeping, but we are discussing the tracheostomy again next consultation. The nasal pressure doesnt help much anymore as he is losing all its benefits every time the lil monkey sticks his hand in his mouth! Although he is so good and hardly ever cries, i know he is trying hard to make things easier on his mommy and we have this incredible bond that just a snuggle and a story keeps him happy and still. After they weaned him off the painkillers and methodone, they said he would probably still need sedation until his lungs are healed more, but because he is so patient and well behaved he doesnt barely need any at all! His feeding has also been alot weaker and slower and more tiring for him since he was bagged 2 weeks ago. He is getting another xray tomorrow to see if the BPD is getting any better, although his signs & sats are showing his lung function is only improving slowly (aparantly thats not good enough?!). Last echo is showing signs of cor pulmonale as his little heart is working super hard to get extra oxygen through his damaged lungs. However its harder to diagnose due to his conditions (mainly the ventricle defect) so that needs more in depth and close monitoring.

Im very emotional and depressed as the hospital said if i dont start taking things slowly they want to keep me in for 7 days as im getting so sick, my body is falling apart and my immune disorder is going crazy right now (hence the double ear and eye infections). And if im sick it means i cant be there to support and feed Giaan at a time he needs me more than ever :( To be honest i think hubby is only making my stress alot worse. I feel SO rejected by him. Im SO worried about DS, and wen i get home i just have to bottle it all up and cry alone as no one cares to listen and DH is never around to talk to me and support me. Im very sad at all the special times that papi has missed out on e.g. 1st Xmas, 1st NY, 1st valentines, 1st time in clothes, 1st feeding, 1st time on canula, 1st major head holding up'ness, 1st mothers day, 1st Easter.... need i go on?!! Hes just working and i know ive not let him get involved because i didnt want the heartache, but if he really wanted to he would have pushed to be there. The whole situation is breaking my heart, but DS is such a good baby that he is content with just his mami. I know he is ok with me, but is he missing out, i mean would he be doing better if more if his family were around?....Anyway, none of tht probably made any sense, im just venting

28 Mar; just a quick update, ive not been able to come online. a couple of days ago 2 men attempted murder on my hubby, hes been strangled, slashed and stabbed :( I got the call from ER at midnight and stayed by his bed during the night. Hes out of surgery so fingers crossed. DS is showing more signs of heart failure, although i just cant face to tell anyone considering our current situation/circumstances. Im rushing around spending my time between DH & DS in 2 different hospitals, ive only had 4 hours sleep in he last 3 days! Poor DS has been left alone alot as ive only managed 2-3 hours per day with him. Please keep my men in ur prayers, they are my whole life and i cant bare to lose them both.