Sep 11, 2013 at 01:58 pm

September 8, 2013

Update posted by babymiles
It's been a busy week of ups and downs for Miles. As of last thursday Miles was 8 weeks old. His weight is up to 3.245 Kg, and in our eyes he is becoming a big boy. He even seems borderline plump, although thats all in perspective. Miles "plump" is still small compared to most babies his age, but its a huge improvement from continually losing weight. Vomiting continued to be an issue this week, so on Friday the team decided to change out his NG tube for an NJ tube. The NJ tube passes through Miles stomach and goes directly into his Jejunum (upper part of the digestive tract). By using the NJ tube there shouldn't be any food in his stomach to be thrown up. Trying to get the tube in was an exhausting experience involving a failed attempt and 3 trips to radiology that consumed most of the da...y on friday. Miles was exhausted by the end of it all, and so was our poor nurse after not getting a break all day. The new set up means that Miles is now on continuous feeds, and at least so far, it seems to be helping things. Noah arrived on friday and has been helping as only a 2.5 year old big brother can. Sam has been able to let Miles breastfeed again now that his feeds are being strictly controlled. He's only allowed to try for about 5 minutes at a time, but it's nice to see him doing something normal. Our plans with Miles are always fluid at best. The doctors say that the most recent ECGs and echos show little change in function, but the fact of the matter is that Miles heart is getting worse, and has a limit on how long it can hold on. They remind us that Miles is in a constant battle, but that he has also shown how strong he is. On wednesday miles will be 2 months old. He needs a miracle. Please pray.See More
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