buddies?

[Bumblebee2408]

Hi guys

Apologies I've not been on much the last few weeks here. Jess had more surgery today she has a stretch of her oesophagus every 2 weeks. I've finally booked an intense week long driving course to get myself driving as I need to now. I've left work recently to look after Jessica when she's finally home.

The government here in the UK are funding some care for Jessica so we're hopefully getting 4 nights a week respite so I can sleep as she is pretty full on 24/7.

She is fed via a pump by a gastrostomy tube in her tummy. She has 6 hourly nebulisers (currently sometimes more often if she's unwell). She then needs her Tracheostomy suctioning when it gets clogged with secretions...... in the mean time Jack is a typical little boy he's into climbing everything and I mean everything, playing with cars and trains and becausd of thos Loves anything to do with Thomas the tank engine (assuming you guys know who he is and he's not a completely British programme like it was when I was a child) he talks non stop now... he can do at least 3 word sentences and always says Please and Thank You's. Bless him he's so good. He can also count to 15 without any prompting at all.

What else ohhh yes because we need night carers they want Jess to have her own room. Now we thought she could share with Jack before all this so now our local council housing association are trying to find us an affordable 3 bed property. Which is good but a long process and part of the reason we can't bring her home.

So all in all busy life and a stressful time but we'll worth it once we're finally home with her.

Abii: woohoo baby number 3. Fingers tightly crossed this one works you've had a tough year for losses I don't know how you've kept on.

Lola: time has flown and hasn't so much changed in those 4-5 years. Funny how we've all already got 2 kiddies in that time when we all worried so much about getting pregnant and keeping the one baby sage in there xx

 

[lolalei3]

Bumblebee I don't know how you keep going on! A lot of people in your situation would not be dealing nearly as well as you! You must be one tough cookie!!

If it's not enough to have a child who is ill they are now saying you need a bigger house?? Wow that's tough, really hope they help u out with that one!

Yes of course we know Thomas the tank engine! It's really popular here is Australia too and I'm just waiting till Owen is old enough to start loving it as Jenna is not really interested being a girly girl! Hehe

Owies still got his breathing issues and there is quite a loud rattling sound with every breath but no more hospital visits so that's something. He's such a chunky monkey and weighs 10kg at 8 months! Loves his milk but won't be spoon fed and only wants it if he can feed himself!

Love to you all xx

 

[Bumblebee2408]

Hi Lola,

Owen sounds sooo sweet. I've found myself pondering If we'll ever have a third at some point (in the future) as I love my two to bits and I was only 26 this week so don't quite feel done with having babies.... however with how ill I was with Jess and the issues she has now and they're unsure if these could be due to genetics etc (as jack had tongue tie she's had swallowing issues etc they think it could be linked) but I guess we'll never know but it could be a risk we'd have to weigh up. But this is all way off!! I'm still trying to get little one home.

On the upside were number 1 for a house 10 minutes away from where we live in the village our drs is already in we're gob smacked by this as we pretty much live in the middle of nowhere so never imagined we'd get anywhere near this near. So just waiting to here if we're suitable for it.

As for Thomas the tank we've just bought loads of the books for him and spent most of the afternoon reading them after his swim session xxx

 

[lolalei3]

That's awesome! Now you'll be in town with all the help nearby! Hopefully you get that place!
Oh wow yea I am 100% done with kids now hehe I honestly couldn't do it all again mentally or physically!! 😳

 

[Bumblebee2408]

Mentally if I have more it'll probably drive Me mad with worry. However psychically I've no idea both pregnancies were so different.

But after almost a year in hospital I don't think I want to see another for a long while xx

 

[lolalei3]

Yea I'll bet! So much to worry about! I'm terrified a third would come extra early as each successive child has been earlier and earlier!

 

[Bumblebee2408]

Totally drained this week. My driving course has been cancelled so now trying to find an instructor to do driving lessons with from scratch again arrgghh.

However we have a house viewing Friday which is good xx

 

[Bumblebee2408]

House viewing went well in theory if I get back from hospital in enough time this Friday we may be picking up to the keys to our new home.... a 3 bedroomed house with a garden in a lovely old village 😄😄

How're you ladies?

 

[lolalei3]

Awesome news! Really hope u get it! We are good, just had Jennas 4th bday which went well she of course got very spoilt!! Owen is 9 months and now sitting on his own, saying dadda and loves giving his mumma big goey baby smoochies! ��
How are your little ones? Is Jess any closer to leaving hospital?

 

[lolalei3]

Trying to work out how to post pics! It's asking for the pictures url????

 

[Bumblebee2408]

I've not posted photos for ages but I know I used to do it from my computer as it was sooo much easier.

As for us.... we pick our Keys up tomorrow for our new home. Can finally start getting sorted.

Lola how is Jenna 4.... these years have flown by haven't they? Thet do sound super cute if you work out how to send photos I'd love to see them xxx

 

[lolalei3]

Great news on the house! Must be such a relief!
Well as for us we are in hospital again with Owen, been here since this morning and probably a few more days. He's had another bought of bronchiolitis and was struggling to breathe, his breathing has never really come good since last time he had it at 4 months old so this is a huge set back! poor little guy.
Hope Jack and Jess are all good and you can start planning for her to come home!

 

[Bumblebee2408]

Awww poor Owen. Hope he's better soon for you. Bronchilitis is awful for them. Hoping he recovers better this time.

Hopefully we'll get settled soon xxx

 

[lolalei3]

How do you manage your time with Jess in hospital?? I can't begin to imagine how you do it! You couldn't always have someone with her could you? I've been going home at night for a few hours sleep as I can't sleep here!

 

[Bumblebee2408]

I'm lucky we have family to help wuth jack when I am with her. Whilst in hospital jess has to have 121 care they get a health care assistant in to sit with her and play while I'm not there. Sometimes I sleep especially around surgery dates.... some nights I go home and she has 121 nursing so honestly I just try my best. I'm sure you're doing a fantastic job 😘

It's hard whenever they are in. How is Owen?

 

[lolalei3]

Wow that 121 care sounds like a life saver! So good that there is something like that so the kids aren't 'alone' in their rooms. Luckily Owie had his own room, the hospital we were at we're all private rooms thankfully! What a great service! I wonder if they have anything like that here in Australia. Oh yea family has been amazing taking Jenna for sleepovers when we needed them! Not sure we could have got through without them!

He's home now after an 8 day stay in hospital, first few days they had him on nasal gastric tube feeds but slowly weaned him off as he was able to take more from his bottle. He was on high flow oxygen most of the time but turned to low flow for last couple of days. Drs are now saying it may be due to 'floppy airway syndrome' or an obstruction like flap of skin, so when he gets a bad virus (bronchiolitis) his already compromised airways constrict further. We are going for some tests but to be honest I don't think they will operate on him even if they do find something wrong as they never touch kids this young unless critical. And if it is floppy airways I don't think there is much they can do. So we just have to wait till he grows out of it I guess!

You must be getting so excited, not long now till Jess can come home!! Have you moved into the new place yet? How is it?

 

[Bumblebee2408]

OMG jess has a floppy airway...!but hers is serious hence the going blue and stopping breathing. That's why she hasaid a Tracheostomy in her airway.... in her case her problems called tracheomalacia if you want to look it up.

We did the high flow and low flow thing... now she just has oxygen through her Trachey she used to hate the nose masks with high and low flow.... we also tried cpap for a while which gives more pressures that was awful.

They did an op for jess to strengthen her airway called an aeortopexy.... basically it's where they wrap part of the aeorta of her heart around the airway then attach it to the sternum but that failed for jess n it took hospital 5 months to decide they would Deffo do it.

Sorry bombarding you with info now but a floppy airway can be quite scary. Although when jess was bad sleeping on her tummy used to help keep her airway open according to specialists. Not sure how much I believe that haha

Anyway sorry I'm rambling about things. Glad he's home now. Must feel great to have him back. As for home we have keys and are moving some bits in but until our carpets are in we don't want to get in properly we couldn't get settled. But once the carpets are in we're so excited to get sorted 😄

 

[lolalei3]

Oh wow that is so strange both kids had the same issue! Who would've thought hey! I will def look up tracheomalacia as they are still not 100% sure where the problem lies. Do u think they will operate? As he has been hospitalised 3 times in 10 months now!

 

[lolalei3]

So it's definitely in his lungs and not an upper airway issue. In hospital again, he just can't seem to shake these constant viruses and fevers which in turn make it hard for him to breathe. He's in a children's hospital this time so hopefully they figure out a better method of treatment!
How is Jess?

 

[Bumblebee2408]

Aww Lola I feel for you. It totally stops your life when they're in hospital.

We're still up in the air. Carpets finally are coming next week along with our new Sofa woohoo. Can't wait for it to feel like a home.

Jess has a cold so is back on oxygen and feeling rubbish..... to be fair we're all made up with cold but making the best of it.

Jacks learnt a new trick how to climb trees he terrifies me he goes sooo High up I'm like don't go further I can't reach you 🙉😥

I hope opens feeling better too. Hopefully they won't need to operate but can find a good way to treat his issues. Hopefully if it's just oxygen requirement to help they can arrange for you to have some at home so when he's poorly you can monitor and use it. We have SAT's monitors for jess to keep an eye on her oxygen rates... Heart Rate etc as well as oxygen and all other medical kit she needs so it's doable

Keep me updated I'll try and post pop on as much as poss xx