Another update on Ella now 19wks old

[nineena]

Wow can't believe my lil girl is almost 5 months old and what a rollercoaster it's been. She's been home from neonatal now for 10wks but of that time has been in hosp on 4 separate occasions. We're still having problems with her feeding due to the problem she was born with and she's had 5 operations now to open her oesophagus, the last being 28/10.

Although Ella was only 5wks early which isnt nearly as prem as others on here she was only 3lbs 4oz when born and today weighed in at 9lbs 2oz, finally in 0-3months clothing hehe. She's doing everything a 4/5month old baby should do and some things she's doing that she shouldnt yet according to HV, is almost sitting unaidided trying to sit up when lying down. We're deffo not out of the woods yet as at the min she's still needing some NG feeds due to her swallowing issues but we've also started introducing some purees to aid reflux, she loves pear puree and she'll need further surgery more than likely to re-open her oesophagus

Yeah so that's it really. Not been online much recently, motherhood making my life VERY busy hehe and have a ridiculous amount of appointments to attend xx

 

[ABRAHAMSMOM]

Glad to her your lo is doing fine.hang in there and have lots of faith and hope...there is light at the end of the tunnel.

 

[Agiboma]

glad to hear ella is doing well, and i love the new profile pic she is so cute

 

[maisiemoo]

I'm pleased to hear Ella is doing well! does she need the NG tube for the narrowing or is it motility issues? we enter the minefield that is weaning in a couple of weeks, i have mixed feelings of dread and excitement. I'm hoping it doesn't reveal any problems

 

[nineena]

Miaise we started weaning at doctors sayso a few wks ago and she was doing soooo fab with it, no coughs atall so we knew there were problems when she started gagging on the puree. She had another dilation 10days ago but NG still insitu coz her feeding is no different, she struggles to take even 2oz now coz she's coughing so much. Not sure what it is, SALT lady wants her to have a video fleuroscopy and Ph Study coz its as if theres something irritating her oesophagus thats making her cough and splutter then she coughs so much even not feed related that makes her wretch and her TOF cough is just ridiculous at the minute. We're seeing her surgeon on Tues so hoping he'll book her in for them coz it'll be much quicker that way and im hoping he'll come up with a suggestion as to why she's suddenly struggling so much. Deffo not a stricture coz she was only dilated 10 days ago.

Hows your lil bubs doing now? xx

 

[maisiemoo]

Its good that a stricture can be ruled out, as for the coughing, I hope they're able to find the cause quickly! Was she coughing loads before starting solids? Olivia had her last dilatation at 14 weeks. I think she is doing well, however she's recently become bit of a pickle with her feeding. Im not sure whether its teething, reflux or tof related! She feeds well at night, but every feed is a fight during the day. She latches on/off/on/off and cranes her neck away from me. Im thinking its teething, as she's ok with being laid flat on her back and isnt wheezing/coughing much - I do worry she's not getting enough though, but she's following her percentile line nicely now. Babies are just so confusing

 

[nineena]

Yup these bubs really are so confusing with their lil habits hehe. What centile is she in now? Ellas still under the 0.4% but has followed her own lil nice curve lol.

She never used to cough atall during feeds til she was perhaps 10wks old and since then its just gotten worse and worse and now cant even take 5mls without coughing and spluttering. The earlier she coughs the less she takes. Ella's teething too which i know doesnt help coz of all the extra saliva and the obvious pain. Its good that Olivia is taking some good feeds though. We're struggling to even get her to take 60mls at the min. Have even tried leaving her to feed as many times as she wants but she still only takes the 6 feeds.

It would be nice if there was more support for TOF babies, like a support group or baby group for TOF children instead of just the TOF website, dont know about you but i just feel so isolated and i hate taking her out to places where she's going to need to be fed coz of all the coughing and time taken to feed

 

[maisiemoo]

I know exactly what you mean. Olivia doesnt cough much, but when she does you know about it. Most assume she has a cold, but I had one mum actually move her baby away from olivia during one of coughing episodes. Most people at the groups I attend are aware that olivia is a little different now , but still, when im virtually standing her on her head to feed people do stare. I do find it hard to relate to alot of mums, especially as feeding/weight gain is so topical for our babies. On the subject of weight gain, she is just under the 25th centile. Have you met any tof mummys? We've met a couple and it was really really nice. Maybe you could set up a local meet near where you live?

 

[nineena]

Aww she's doing great, cant imagine Ella ever being on any centile line to be honest hehe.

The only other tof mummy ive met was in the neonatal unit, her baby was born a week before Ella but since leaving hospital havent met anyone atall. Was talking to a local mum briefly on facebook. Not sure how many local tof mummies there are and as for setting up a support group think thatd have to be a task for when we're a bit more settled. How did u meet the other tof mummies if u dont mind me asking.

Yup think its very rude when people assume our bubs are terribly ill and going to infect them with something from the coughing. One good thing though is that no1 said anything or asked what's wrong with her with having a feeding tube in which im surprised about, they just talk to her and tell me how beautiful she is which i dont mind hehe

 

[maisiemoo]

Aww she's doing great, cant imagine Ella ever being on any centile line to be honest hehe.

The only other tof mummy ive met was in the neonatal unit, her baby was born a week before Ella but since leaving hospital havent met anyone atall. Was talking to a local mum briefly on facebook. Not sure how many local tof mummies there are and as for setting up a support group think thatd have to be a task for when we're a bit more settled. How did u meet the other tof mummies if u dont mind me asking.

Yup think its very rude when people assume our bubs are terribly ill and going to infect them with something from the coughing. One good thing though is that no1 said anything or asked what's wrong with her with having a feeding tube in which im surprised about, they just talk to her and tell me how beautiful she is which i dont mind hehe

I met one lady off facebook and the other in hospital; chatting to both has been great as both babies are older and doing well. I guess they're proof there is light at the end of the tunnel.

It's nice that people haven't drawn attention to the feeding tube, i must admit, I am surprised. It must be so refreshing not having to explain yourself. I think I over compensate a little by explaining the cough - i shouldn't really. I suppose with time it will get easier.

Alot of people ask about Olivia's size more than anything, especially as she's nearing 6 months. When I explain she was prem, people will always say "oh, that must have been hard" - now I just smile and say yes, moving the conversation on