Andrew - born at 29 weeks!

[Marleysgirl]

As expected, they've increased his EBM again, now 9.5 ml/hr. He consumes in 6 hours what I produce in 4, so he's catching me up! Good job there's around 5 litres in the freezer!

 

[premmiemum123]

Hi Marleysgirl, 4 hours on and 4 hours off is very good considering he is just over a kilo. They took Emily off caffeine too early so she kept desating down to 30 and the odd brady. That caffeine is magic stuff.

He will get there. They go at their own pace and when they are ready they will let you know. Once Emily started having long stretches off CPAP she started to fight it when it went back on so one day they left her off for 24 hours - scared the liviing hell out of me but she loved it - no more cap on her nose. You will get there soon. It all happens so quickly, like the weight gain, before you know it he will be in 4lb clothes and you will ask where has that lovely skinny little tyke gone.

Are you keeping a diary? A written one I mean not online?

x

 

[Marleysgirl]

"Written"? As in, not online? I don't do anything that's not online!!! I've got three different progress threads on two different website forums (fora?) so I've got quite a good record of what's happened so far.

Andrew's now on 6 hours off Cpap, 4 hours on, and there's no change to his de-sats. Mind you, he still has almost as many when he's on Cpap!! He hates having the nose-piece & hat put back on, fights against it with his hands.

Do you mind me asking what weight Emily was when born? Andrew was only 635g as he had IUGR - there's another baby in the same ward who was born at 25 weeks, but she was 800g at birth. I think it's his size, rather than his prematurity, that's behind his slow progress with breathing.

 

[Marleysgirl]

whoops, duplicate post!

 

[sherryberry79]

Hi Marleysgirl,

I'm so happy to hear ur lil one is doing so brilliantly. I had our baby girl Amelia on Aug 3rd at 26+3 and she was 620g, small for her gestation as she was not getting the nutrients she needed from the placenta due to my developing pre-eclampsia. She is doing well too, but she is having problems with her lungs and although she was recently off the ventilator and on bipap/cpap she is back on the ventilator again now. Doctors say she will get there in her own time though.

Sounds like your son is doing so well, and his weight gain is great, hope he continues to go from strength to strength.

 

[Marleysgirl]

Hi Sherry and thanks for your post - good luck and cuddly hugs to Amelia! How much does she weigh now? (Do you have a thread on here?)

ETA - just spotted that you're in Stockport! Is she in Stepping Hill (not sure what they have as NeoNatal facilities) or up in St Mary's?

I'm guessing that you had no warning about her early birth, did you have an emergency c/section? I did, and ended up pretty badly bruised, they say it was because Andrew was so small, they had to dig in to get him!

We were very lucky in having a wee bit of notice that Andrew would need early delivery, so at 28wks I was injected with steroids to help develop his lungs (he came a week later). This definitely helped with his breathing, so he progressed pretty quickly off the ventilator, though is taking his time with Cpap.

 

[premmiemum123]

Hi Marleysgirl, Emily was 932g when she was born and dropped to 850g so she was quite big for her gestation, however that did not stop her from having serious breathing problems because her lungs were so immature. Weight does play a part but it is not a major factor. Maturity is. Apparently in terms of maturity, there is a huge difference between a 26 weeker and a 28 weeker, so you have a head start. Emiily was ventilated for 24 hours then put onto CPAP in air (21% oxygen). In hindsight I wonder if she was taken off the ventilator too early as she would have massive desats and bradys. She would desat to zero even at 32 weeks, she scared the life out of the nurses, this improved slightly to 30 percent and she was still having bradys at 36 weeks when they say they should grow out of them. Each baby is different and Emily was just slow at learning to breathe, at times I felt they pushed her too hard when she was not ready. They took her off caffeine too early so that was part of the reason why she was desating so low and required Oxygen on many occasions. Another reason why she struggled was reflux, sometimes when the pain was so bad she would hold her breathe and then forget to how to breathe again which I believe is quite common for babies with reflux to do, espeically extremely premature babies.
We got there in the end.
Andrew has maturity on his side those extra weeks make all the difference, also you were lucky to get the steriod injections, they are worth their weight in gold, I had two and thank god I did even though when Emily was born she was not breathing, once resuscitated she was fine.

Now she is home she still has the odd occasion where she will choke, hold her breath and then you have to slap her on the back to make her breathe. It usually happens when feeding. This doesn't bother me at all and she will grow out of it.

Please don't worry about the desats, it is normal and he will grow out of it as his lungs mature. I focussed on it and made it a big deal for me on hindsight it was part of Emily growing up. I know it is hard but you will get there...x

 

[sherryberry79]

Hi Marleysgirl,

Yes, I live in Stockport, Amelia was born at Stepping Hill but was transferred to St Mary's very quickly. I had to stay at Stepping Hill after the birth for six days, that was really hard, but then I got transferred to St Mary's too so it was much easier. Is Andrew in St Mary's too?

We had absolutely no warning Millie ( we call her that for short) would be putting in an earler than expected appearence. I did not feel ill at all, but noticed she was not moving as much as she had been so we went to Stepping Hill hoping to be re-assured, which we were at first by hearing the heartbeat, then they took my BP and things really kicked off from there. We went to the hospital after lunch and Millie was born by emergency C-section at 17:54. They only had time to administer one injection to help her lungs. Thank goodness we went to the hospital when we did, as the consultant said that if we had left it until the same time the next day it would have been too late for both of us!

I was quite badly bruised after the op. I am very squeamish and a total wimp so I didn't look at the wound for as long as possible! The bruising is much better now but the incision site feels quite rough and it is still quite numb in places. I have read that the feeling of numbness can last for a long time though.

 

[Marleysgirl]

Yes, I live in Stockport, Amelia was born at Stepping Hill but was transferred to St Mary's very quickly. I had to stay at Stepping Hill after the birth for six days, that was really hard, but then I got transferred to St Mary's too so it was much easier. Is Andrew in St Mary's too?

Yes - we're in Room 3. I'm guessing with Millie on ventilator she's probably still in one of the NICU rooms (Andrew was promoted to High Dep when he came off the vent for good). We visit every afternoon between 2pm & 4pm, if you're there at that time, come and look for us! Sometimes these things are easier if you have someone else going through the same situation.

but noticed she was not moving as much as she had been ... Thank goodness we went to the hospital when we did, as the consultant said that if we had left it until the same time the next day it would have been too late for both of us!

We were due for an u/s scan on the placenta about 3pm on the Wednesday afternoon, but went up earlier (noon) due to reduced movement, and the consultant scanned us on arrival. Andrew's heartbeat was still strong but his movement "sluggish" (turned out this was because of a cranial bleed); but the consultant also said that Andrew would only survive up to one more week inside me, and we could lose him at any time without realising. We decided to let them carry out the c/section that day as he was better out than in.

I was quite badly bruised after the op. I am very squeamish ...

You don't want to hear about mine then! Let's just say, I'm not completely healed ....

 

[sherryberry79]

Wow, Amelia is in room four so her and Andrew are next door neighbours!! We tend to go a little earlier, usually around 11ish, but sometimes we get there a little later if we are busy. We will look out for you though, it would be good to talk to some other parents who are going through the same thing as you say.

Marion was looking after Millie last night and ahe said that during the night her ventilation tube dislodged itself so the doctor was called to replace it. The first tube was removed from her mouth and before she could insert the second Millie had stuck her thumb in her mouth and was sucking away on it.........wish I had been there to see it. Marion said it was so cute she told all the nurses about it at handover! The staff on the unit are absolutely fantastic aren't they!?

Great to hear about Andrew, he sounds like he is a big strong boy now!

 

[dippy dee]

hi marleysgirl i'm glad to hear andrew is doing so well and that he now has a little friend next door, i am so glad you and sherryberry have found each other and i guess you will be a great support to each other xx

 

[Foogirl]

I love this thread. I always check to see how it is all going - it is like waiting for the next episode of 'stenders - except this is far more exciting to hear what is going on and now we have a new baby to see the amazing progress of!

Well done Andrew and Millie for doing so well.

 

[Marleysgirl]

Wow, Amelia is in room four so her and Andrew are next door neighbours!! We tend to go a little earlier, usually around 11ish, but sometimes we get there a little later if we are busy.

If you're still there at 2pm, come look for me (Rm 3, 2nd baby on right - the tiny one!). I heard there was another tiny baby on the unit, as Andrew is only the "second smallest" I thought it was hard when we were in the ICU room as all the babies there needed support; but I'm finding it hard in the Hi-Dep room now, as I'm beginning to see babies go home, and Andrew's still in ... probably for another 5-6 weeks till his due date.

Marion was looking after Millie last night and ahe said that during the night her ventilation tube dislodged itself so the doctor was called to replace it. The first tube was removed from her mouth and before she could insert the second Millie had stuck her thumb in her mouth and was sucking away on it........

Sucking reflex kicked in Still waiting for Andrew to show signs of this - his fingers wander to his mouth, but then either disappear up his nostrils (yeuch!) or pull his nasal cannula (nose prongs) out - he did that six times yesterday in two hours, I think he's had enough of them!

The staff on the unit are absolutely fantastic aren't they!?

Have you come across Richard yet? He's our favourite! No, as you say, all the staff are wonderful, even the trainees are really friendly and helpful.

 

[bumpsmum]

glad Andrew is coming on a treat, welcome sherryberry and baby Amelia so glad you have found each other, you will be able to support each other so much xx

 

[Marleysgirl]

Today Andrew is 38 days old, and now weighs 2lb 13.5oz! He's putting on weight like nobody's business, which will hopefully have a good effect on his breathing. He's currently in a regime of 8 hrs on, 4 hrs off, Cpap but is still having a scary number of de-sats. They've changed his milk feeds from hourly to two-hourly, and I'm told when he goes to three-hourly then I can have a try at breast-feeding him!

 

[Foogirl]

Yay! Well done Andrew!

 

[Marleysgirl]

Photos!!!!!!!!!! Because he was dressed for the first time today!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020808.jpg

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020814.jpg

His feed is now 22ml every 2 hours, and they're trialling him with 10hrs off Cpap as we speak ... Whilst I was cuddling him today, he was very awake & happy. He kept pulling out his nasal cannula, and his SatO2 rating hardly fluctuated, only as much as it was doing when he was actually receiving oxygen.

 

[sherryberry79]

Awww what a handsome lil fella all dressed in blue, he is gorgeous! Glad he's thriving, can't wait til we can dress Millie all in pink!

 

[Marleysgirl]

Awww what a handsome lil fella all dressed in blue, he is gorgeous! Glad he's thriving, can't wait til we can dress Millie all in pink!

Can't be far off now ...

So she's in Room 4 - which bed? (right/left, count from door down) - just so I can go and have a nosey!

 

[sherryberry79]

She is in the second bed on the left as you walk into room four. I have tried to upload some piccies of her onto here but I can't get it to work (I'm a bit of a technophobe)! I think Andrew and Amelia share the same milk fridge too, I saw some bottles labeled up for baby Andrew!