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Update - Coping at home...

Well now the hectic Christmas period is over we are now trying to fit into a routine. A few days ago Charlie got himself so tired that he was hysterical by 11pm and would only drop off if squished right into my breasts. I wouldn't mind so much if he wanted to feed but he really has no idea what to do with them. :roll: So I have now started a strict daytime nap routine and it worked immediately. Not only does he sleep at night but he is going down at 7:30pm so we get a peaceful evening - hooray!

I am finding the expressing business quite tiring now. I am expressing all of his feeds and then having to feed him through the tube which takes longer than a simple bottle feed just in itself. On top of that he projectile vomits after most feeds so I have to be careful about how to handle him and need to change him and wash his clothes many times every day. He should be kept at a certain angle for 30mins after every feed - whoever thought of that doesn't have a toddler as well. How am I meant to keep her entertained whilst holding an 18lb baby in a semi-reclined position? He sleeps in a bouncy chair which helps at night but doesn't solve the problems during the day. The problem is that the vomiting means that he isn't digesting enough milk. His blood sugars keep going too low and he is losing weight. I am desperate to stop him being readmitted and I get really worried about the sugar levels. I have increased his reflux medication to the maximum levels for his weight but to no avail so am now going to start introducing Enfamil AR in order to try and control the reflux. I am heart-broken about moving to formula, especially after expressing for 4 months but his health must come first. I will continue using EBM at night as he usually doesn't throw up those feeds.

On a more positive note I am starting to take Charlie to baby/toddler groups. He loved Jo Jingles this afternoon and responded really well to the music and singing. After over 3 months of being restricted to his hospital cot I am very keen to get him interacting with other babies and enjoying life like a normal child. I don't dare take him swimming yet in case he vomits in the pool. He is generally a very smiley baby unless he is being fed, which he finds very uncomfortable. He is also now starting to suck on his fingers and hold his rattle. I am still worried about his development but we will just have to see how it goes. Abby adores him and is constantly giving him cuddles and kisses (ok, she mauls him). Luckily he loves her just as much and saves his biggest smiles just for his big sister. image

We have our 6 week check on Monday (when he is 17 weeks old) and have three outpatient appointments at GOSH in the next month. One to check on his original condition, one with the Speech and Language team (hopefully to help with his feeding) and an MRI scan to check on his brain activity as he is on anti-seizure medication.

I am obviously so pleased to have him home and to have my family together at last but it is so tiring and I feel like I'm letting Abby down as I cannot spend as much time with her as I would like :cry: ,

H xx


  • Hey BF

    Sorry, I haven't had time to spend on a decent reply before now!

    So glad to hear that Charlie is enjoying himself at baby groups and music. It must be so lovely for you all to be able to go out and about doing normal family things after such a long time image

    I can understand how heart breaking it must be to move him over to formula too...I know all too well sadly, although we did not have the same problems as such, it still upset me at the time. image In fact, looking back, if I'd known Skye had been suffering with terrible reflux I probably would have perservered more. i thought my flu jab had poisoned my milk and stopped expressing because of this :roll: I remember the 20 minute minimum holding upright after a feed too, god it drove me insane, and I didn't have a toddler to worry about too!! At least he seems to be keeping his night EBM down which is good image

    With the reflux it took us a lot of trial and error with various meds before we got one that worked, in fact I think we tried them all!! I guess there may be some other drug combinations that may work better for him if you're allowed to change him over?

    How did his check up go yesterday? And when is your first GOSH appt??

    I am sure that Abby is enjoying having him home too, and that this in itself helps keep her entertained even if you feel you can't spend as much time with her as you would like. Loved the photo on FB of her checking dolly's blood sugers btw!

    You're doing a sterling job so please don't beat yourself up.

    It's always nice to hear how you're getting on and hope we can get together for a catch up some time soon.

    Iz & Skye x
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