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Its getting close to baby Cube arriving, a bit sooner than expected. I'm excited but also terrified.

 

He was diagnosed at the 20 week scan with a heart condition called TGA, this essentially means that his heart is not wired up correctly, where the oxygenated blood will just be pumped back into his lungs and not the rest of his body. While he's in the womb, babies have an open valve which allows the blood to mix. 

 

The first part of this treatment is to keep this open (first with medicine but 50% need a simple keyhole surgery) until he's ready for surgery (10-14 days), where they'll get to his heart and switch things around so it's all connected properly, then they'll keep an eye on him for a few more weeks. Most of the time, this is the only treatment he'll ever need for this condition. 

 

We've met quite a few members of the team that will be treating him (both at the hospital doing the C-section and the children's hospital) and they've given us a ton of confidence and we feel like he's in good hands 

 

My girlfriend has been on blood pressure tablets and the latest scans have shown that he's dropped down in size, so they've decided that he's coming out a bit early - within the next week. 

 

It's amazing what they can do to treat babies with this condition.

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It's rough to start family life with such things but it sounds like life will relatively soon be a normal family life without much to worry about - or well, except that you suddenly have a baby and that alone gives tons of worries! :D

My own family life started with my first-born son to have Hirschsprungs Desease and got a hole in his colon (which is deadly) so he was admitted to surgery on his fifth day, then again when we was one month old and finally when he was 4 months old. It was rough, but he's just fine now. He has some scars on his belly and goes to the toilet a little more often than others but is otherwise just fine. 

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I imagine its a bit daunting and naturally frightening but by the sounds of it you've got good medical staff who have put you more at ease. Hope it all goes well!

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Wow, best of luck to the 3 of you! It’s terrifying being a baby into the world, never mind with all of the extra to deal with. Relieved to hear you have a good team helping and they are very reassuring to you both.  Is this your first?  Really hoping everything goes well for these next few weeks (& beyond of course!).

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Congrats on the upcoming little one!

So… Are we calling him Cuboid then? That sounds about right to me :)

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20 hours ago, WackerJr said:

Wow, best of luck to the 3 of you! It’s terrifying being a baby into the world, never mind with all of the extra to deal with. Relieved to hear you have a good team helping and they are very reassuring to you both.  Is this your first?  Really hoping everything goes well for these next few weeks (& beyond of course!).

Yup, it's our first. Got lots of support both from the hospital side and friends/family. Currently waiting for the actual day and time, but they do have a lot to organise.

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Which Children's hospital are you with? My son has an issue that means he has regular surgery and he's with Manchester Children's hospital. They are amazing and a slick machine.

 

Good luck, hope it all goes well.

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We're with Alder Hey

He was born earlier today, doing really well.

 

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Congratulations. Glad to hear he's doing well

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His levels oxygen level was a bit low yesterday, but we're told that it's expected. When they do the keyhole surgery, they like to see how they get one without any medicine but most of the file the medicine is still needed. Since he was put on the lowest dose, he's been doing really well.

 

Hopefully he stays like this while they get him ready for surgery.

 

 

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Congrats Dean, good to see things are going well

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It's a scary prospect to hear about serious health conditions on newborns, but it sounds like it's being handled well so far. Let's hope the course stays steady.

Hope everything goes well with the surgery. Rooting for you all.

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His surgery was today, and it went well.

It was a very long day, he went away at 9AM and we didn't hear a single thing until half 5. The surgeons are very pleased.

There are still a few weeks of recovery, and he will get better/worse as they find the right balance of everything, but the worst is over.

 

 

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Glad to hear it went well. 

Did you get to watch him being to to sleep before the surgery? 

We did that with our oldest son when he was newborn. It was heartbreaking.

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I can't imagine not hearing anything for eight and a half hours, that must have been an excruciating wait. Glad to hear it went well - all the fun things to come now!

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1 hour ago, MindFreak said:

Glad to hear it went well. 

Did you get to watch him being to to sleep before the surgery? 

We did that with our oldest son when he was newborn. It was heartbreaking.

Yes, they let us watch him to go sleep then give him a kiss on his head. Very upsetting but still good.

 

He's progressing really well. His drains are being removed right now, he's been taken off his muscle blockers and is doing some breathing on his own, with the possibility of taking the ventilator off later today.

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Congrats Cube! Glad to hear he's doing well.

I recently had a neice born into the world also crazily early (just barely 27 weeks) - she's got a long road ahead of her but it's incredible what the hospitals can do for them these days.

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Great to hear everything is progressing well. Sounds super promising for the future.

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His recovery has continued to be amazing. He has no additional oxygen support, he's on no constant medication, just some oral stuff which is being reduced to stop. His main pain relief is a bit of paracetamol every now and then. 

We were able to push him around the ward a little bit today in a pram as he now just has his sensors attached to him (and it's a portable unit), so all very positive.

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You both must be being so strong for him!  That child is going to grow to be so resilient!  Congratulations to you both, and while tough, I hope the road to recovery keeps on the positive path it’s on.

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Excellent news, congratulations. 

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So Ollie had a checkup today, the doctor was concerned about one of his arteries and has booked him in for a more in depth scan, which will be next week. If the doctor is correct, then it means another surgery to fix the issue. 

Even though it's not confirmed, we're absolutely devastated and are absolutely dreading the scan.

 

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