hi all! Yes im in the same boat we didnt know we were having a prs child with a cleft it was a very emotional surprise. Born on the 27th of march 2009 with respiratory distress noah was taken from me within minutes and sent up to royal womans hospital were we stayed for 5 weeks.at the start i was breastfeeding him until he was 4 months bottle feeding him also were he would always take a inconsistant amount between 20 n !00mls every feed plus ng top up..once we got noah home it was a matter of 2 weeks and reflux and heart burn kicked in.feeding was impossible he associated the bottle and breast with pain so it took a few months to get him back on the haberman. Bottle Volumes would go up and down all the time feeding became a nightmare as he would choke n stop breathing on us when i would breast feed him. bottles were exhausting for him n would choke. But ng tubing was worst if he was laying down he would vomit so bad he would stop breathing so we learnt really quickly to turn him prone sit him up on a pillow to ng him thru the night. Just 6 weeks ago the nurse placed his ng tube into his bike duct so we had 2 weeks of antibiotics from docs because they thought he had aspiration in his lung. Wasnt until i pulled it out cause i was over the bright yellow green stuff coming out of all activitys plus up the ng tube and it was in 20cm lower than suppose to be. So i was back to square one again with bottles. Hence mummy got taught how to put ng in after that cause i knew i would do it faster and better than the nurses, im very good with my hands. after 2 weeks we did tuff love after he pulled it out one wkend.all was going well he was eating solids drinking around 400mls a day loving sipping water until after 4 days started teething and then he went cold turkey on everything. On the 7th day got ng back in he lost a little over 500gm. Now this past 4 days his back on solids but the bottle no chance he just chews the crap out of it, his got teeth everywhere. I wish he was driven by hunger but like a few other babys he does not recognise it. Today his 7 and half months has a review for cleft repair in jan for op in march he ll be 1.ive been feeling abit alone, until i read this website ive had 1 other mum to speak to for support, the med team were i live have no experience in this field plus dont recognise noahs behaviour eg never crys when hungry! There solution is just tube him initiate bottle for at least !5min before ng topping up. I get very frustrated and concerned i wonder if i should be using a different feeding method?only prob is i think i have tried them all and they are so pre-historic compared to the haberman. Apart from the drinking issue noah is thriving born at 9 pound and now is 9.5 kgs. Is crawling around mad started at 6 months and now trying to walk. His a confident lil man i feel like his overcome so much. His my true love. . , . .
Hi Deb. I loved reading your blurb. It was so upbeat! Congraulations on winning the war on..well attitude!! Sounds like Noah is a champion. The feeding thing is tough. Have you tried a a "Mag Mag" or sippy cup. You can buy the Mag Mag series at Safeway. There is a bottle that has a soft white chewable, cross cut teat that is long so great for PRS kids. Or a sippy cup, just the cheapest one you can buy with no valve in it. We started Balin on this at around 6 months and it was the best thing ever. I'm in the process of organsing our christmad family get togethers. If you would like to send me an email at teh info@pierrerobin.org.au address or fill out the membership form and i can then put you on our databse to inform you of other parents in your region and social functions etc. Look forward to hearing from you. Jacinta
