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Thread: Bonding

  1. #109

    Join Date
    Feb 2005
    Location
    Sydney
    Posts
    382

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    Hi Tiff and Carrie, Thanks for asking about Gussy. He's doing exceptionally well considering his shakey start to life!

    Currently there are 13 specialists/allied health professionals monitoring him. Literally every day of the week (except weekends) we have to head to at least one medical appointment with him. It's exhausting but seems necessary for the moment. It seems that there are a number of lingering effects from his tough time inutero (I bled very heavily every day from week 5 to week 19, then sprung a leak in the sac at 19wks and had only 10% amniotic fluid from then until 23wks when my sac totally ruptured - so then he was free floating in the womb without a sac/fluid bath until he was born 5 wks later. Then at birth only 5% of the placenta was functioning).



    All his major organs are now firing, his PDA has mostly resolved, his brain bleed has resolved (although we're still not sure what damage the previous haemmorages may have caused). We're booked in for his hypospadias operation this week. His hydrocele are still there but are no longer causing him major problems so we can hold off doing anything about them until he's 18months.

    We had a really tough time until December when Fergus' allergies were diagnosed (the proteins in wheat, dairy, eggs, seafood, nuts and soy). Now that I've eliminated these things from my diet he's a completely different baby. We've now mostly got control of his chronic reflux with Losec. The paed dietician and neo-natologist believe that his allergies will resolve by the time he's about 5 years old.

    Gussy is still a little fella. He hasn't made it onto the growth charts even for his corrected age of 6 months. He currently weighs 4.9kg. He never managed to master breastfeeding (due to a combination of oral aversion from the ventillation, CPAP & nasal-gastric tubes, tongue tie, reflux, torticollis, allergy to the milk, too many bottles) so I just kept on expressing for each feed. I've now been feeding him EBM for 9 months. Crazy isn't it. At least one bonus of feeding him by bottle is that we can see what volume he drinks. We know that his appetite/intake levels are low, so that's the more likely cause of his low weight rather than an absorption problem. He is now almost 5 times his birth weight - so from that perspective he's doing ok.

    He has a severe case of plagiocephaly (a parallelogram shaped head) caused from all those weeks while he was still inutero without amniotic fluid after the sac ruptured. His poor little head was squashed in my pelvis so couldn't grow into the normal shape. Then being born so early his skull was very soft and malleable so that compounded the problem. He's now wearing a helmet to help his skull sutures (plates) to shift into alignment. We're having quite a tough time getting him to wear it the required 23 hours a day. We've needed lots of adjustments made to the pressure points within the helmet in. Fergus just doesn't seem to be able to tolerate a lot of pressure on his head and screams in protest and thrashes & bangs his head on the floor when we put it on him. So far the longest continuous period of time we've managed to keep it on his head is 9 hours - which is a loooooong way from the recommended 18hour minimum far less the ideal of 23 hours! Agghhhhh. He also gets really hot and sweaty underneath it so I'm really hoping that once the cooler weather hits we'll be able to get him into it for longer stretches.

    He's quite behind in his gross motor milestones - but then so are many term babies. He seems to be much better at fine motor skills. He's also very chatty, smiley and animated. He really is a complete delight. There's really not a day that passes that I don't thank god and my lucky stars for this gorgeous little fella!

  2. #110

    Join Date
    Jan 2005
    Location
    Mooroolbark, VIC
    Posts
    1,154

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    Kirsty, I didn't know just how much you and Fergus have, and are still going through. My heart and my prayers are with you and I just want you to know how courageous I think you, Fergus and DH are. I think it's fantastic that you have managed to express for so long and I'm sure that your little one is really benefitting from all of your hard work. It must be really difficult and heartbreaking seeing your beautiful baby go through such a tough time, however I know that it just makes him all the more special to you and loved more than you could imagine possible.
    I just want you to know what a fantastic job that I think that you're doing and please feel free to either PM me or post here if you want to de-brief or just have a bit of a chat.
    I'm so glad that you have been able to sort out some of the allergy issues and that the reflux is settling down, it must be a hugh relief.
    All my love to you and little Fergus -

  3. #111

    Join Date
    Dec 2005
    Location
    Home of the Winery Walkabout!
    Posts
    944

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    Tiff, even though my babies are classed as "full term" ,they still were born before 38-40 weeks and are classed as being prem.I have joined Austprem and have found that they are a wonderful group of ppl.
    We have a chat tonight if you would like to join in, just log onto the site and go to chat.

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