Preemie Parent Group

[nkbapbt]

Hi,

I know most of you already know me and Lakai, but I will quickly introduce myself and Lakai. I am Nic, Im 30 and live in Canada with my husband, my son Lakai and Jaeden our dog.

Lakai is a 24+4 weeker, who was born Nov 2, 2008 (I can't believe he is turning one in 2 days!!). He was intubated for 79 days, on CPAP for about three weeks and on low flow for about 2 weeks. He had his PDA repair surgery in the NICU which resulted in his left vocal cord being paralyzed (rare side effect so they say...but from my research seems more common than they think), because of this he has to feed via a g-tube into his stomach because the vocal cord does not protect his airway, so he aspirates food.

He also had a double hernia surgery, laser eye surgery for his ROP and a Grade IV bleed in his brain (which the doctors basically told us either we could see what happens, take him off support and let him pass away naturally...). They also told us that should he survive with that level of brain bleed he would be very handicapped and very delayed in all areas.

Well he is 8 months corrected and almost one actual now and he is not delayed one bit!! He has hit all his milestones on time and was just at his Neonatal Follow up appointment and was assessed at a 10 month developmentally age!! WOOHOO

I just thought this would be a cool place for us preemie parents to connect and chat!!

 

[hopedance]

wow he was very tiny, a huge well done to both of you for doing so well! do they know why he came so early? the little girl next to Sam in SCBU was born at 24+5 and has similar problems, she was such a sweetheart peeping out at me.

Sam was early too, although much less so. he was born at 30 weeks because of my pre-eclampsia. he weighed 3lbs 4oz which was fab, he spent only 10 days in intensive care, 1 day in the high dependency unit, and another 4 weeks in special care. he is 3 months old now actual weight, or 3 weeks corrected age.

edited to add - does anyone else have difficulty finding appropriate toys for our LOs to play with? i find that sam is not strong enough or co-ordinated enough to use many toys, but he is very mentally alert and capable so seems to get bored.

 

[premmiemum123]

If I work it out correctly Sam is about 2 weeks old. The best toy for Sam at that age is you! It is hard work but pays off. I sang to Emily, read to her, helped her discover her hands, helped her excercise her limbs (the song 'if your happy and you know it clap your hands is a fun one to do'). Eventually you can introduce toys however Emily at 7 weeks corrected is still having problems grasping objects...

At first it is strange doing all the above with nothing in return by perservere and then eventually at 5 or 6 weeks corrected you will get that much waited for smile. It makes everything worth while.

Oh and also the baby first black and white book is good. The faces one is a good one.

 

[Lottie86]

Hello!

I'm Lottie, I'm 23 and live with my partner Dave, baby Findlay and our Norwegian Forest Cats in NE Scotland, UK.

Findlay was born at 35 weeks (on hospital dates, 33 weeks on my dates) due to placental abruption. Intensive care for 6 days, HDU for 5 days and 'normal' special care for 5 days then home He has a PDA but it thankfully closed up itself at 16 weeks old (just before they were about to do something about it!)

Being a preemie and having a weak immune system he picked up a chest infection when he was 5 weeks old and it nearly killed him His temperature plummeted to 28C and his body was shutting right down and they didn't expect him to survive but he's a little fighter and amazingly proved them wrong although we are unsure yet as to the long term effects (if any) of this on him.

He has very severe GORD (the hospital said they've never seen anything like it when they did the barium swallow study) which they think is most likely due to him being prem and therefore his stomach muscles being underdeveloped and he's on maximum doses of every medication they can give him to try and reduce the problem to a manageable level and powder to thicken up his milk to help it stay down and another powder to add extra calories to make the little we can get him to keep down count but with no success.

As a result he can't lie flat and has to sleep strapped on a 30 degree wedge so that we've got gravity helping out and has been tube fed (via NG tube into his stomach) for months via a continuous pump which he's connected to 24/7.

5 weeks ago they carried out an endoscopy to see if there was any further problem that they could see which came back clear. During this they decided to put a NJ tube in which goes through the stomach into the intestine so that he physically couldn't be sick and we could get enough milk into him. Unfortunately this blocked after 3 weeks and we had to replace it with another NG tube. Until he had the NJ tube he was vomiting bits of blood as his stomach was so sore as his reflux is constant which isn't helped by the fact his stomach is very slow at emptying

Since then he's been losing a lot of weight and is now back to about the same weight as he was when they put the NJ tube in. He spent yesterday and last night in hospital after having a general anaesthetic to have a new NJ tube put in to try and build him up as if he is strong enough he will be going into hospital on 16th November for surgery on 17th.

He'll be having open surgery to do a 360 Nissen Fundoplication to tighten the top of his stomach so he cannot be sick and a G Tube to feed him through as he's developing oral aversion and screams if he sees a bottle as he knows that things going in his mouth causes him pain, it's so sad to see. We've been warned he'll be in intensive care for several days after the op and we'll be in for at least a week after which is a short stay compared to some of his previous stays at least. Luckily Findlay knows all the staff really well by now so he views the hospital as a home from home as he doesn't know any different.

He's also got an appt to see a child development team on November 12th as his severe GORD has caused major failure to thrive (he's 8lb 15 at 6 months old) and his head is not growing properly which in turn means his brain isn't and he is not developing as he should (even taking into account being prem), isn't hitting the milestones he should be and he has strange muscle tone.

He can be very floppy one day and then v stiff with his hands and feet clenched all the time the next day almost like he can't relax them and he can get funny little trembles in his hands on the very rare occasions he tries to reach his arm out to touch something so we'll see what they say.
We've been told they may not diagnose him with a specific condition until he is around 18 months old but they can at least start to arrange him physio and anything else they think he needs.

Anyway that's our story in brief (honestly that is the brief version!) and I look forward to chatting with you all

 

[nkbapbt]

Welcome ladies!!

hopedance - They think Lakai came early because I had an infection, but there is no way to tell if I had the infection FIRST or the infection came because my water broke at 24 weeks (actually on Halloween like today). So its a bit scary because I dont know if it would happen again.

I had a neighbor in the NICU who was born at 30 weeks too! That's sort of funny. He is actually coming to Lakai's party today.

 

[Jkelmum]

Hi
Jake was born at 32 wks he is now healthy strong 14 yr old boy xxx

 

[Mumof42009]

Ive asked for the other group thread to be locked and we will use this one, im sure you all know me by now if you dont a quick background.
1st dd born @ 32 wks 4lb3oz by emergency c-section due to placenta abruption cpap -1day then air
2nd dd born @ 28wks 2lbs by emergency c-section placenta abruption-ventilated,cpap,pneumothorax,small bleed on brain.
3rd dd born @32wks by emergency c-section placenta abruption-cpap,pneumothorax,crashed twice after birth.
4th ds born @35wks by elective c-section signs of placenta abruption & signs of iugr-cpap,sepsis x 2 and severe milk intolerence.

 

[Dona]

Hello, I'm sure you all know me too which means I don't need to go over Archie's story. Today he is 9 months actual and 6 months corrected and weighs 18lbs. No issues to note and is hitting all milestones for his corrected age.

Look forward to chatting to you all.

 

[embojet]

Sure most of you know me too, but here's a quickie!
Molly was born at 29+1 due to my pre eclampsia. She was born weighing 2lb 4oz, and came home after 7 weeks. She was on oxygen at home for a couple of months, and is now doing fine.

 

[nkbapbt]

Oh Mum...Im so sorry I feel like a twit, I didnt even bother searching for another preemie group. Im sorry!!!

Welcome ladies.

How is everyone doing with their Christmas shopping?

Is anyone else nervous about going out during flu season like I am, so you are doing your shopping earlier than normal??

 

[Lottie86]

I'm very concerned about the flu season with Findlay and our doctors surgery told me today that he won't be getting the flu vaccination or the swine flu vacciantion "as he is not high risk"!!!!

Amazes me that pregnant people are classed as high risk and get it (even though they may be perfectly healhy) and yet a preemie who obviously has a lower immune system than a 'standard' 6 month old baby, who is of very low weight, has other serious health problems and any infections go straight to his lungs etc is not high risk

I haven't even started Christmas shopping yet with being back in and out of hospital with the little man. Guess it will all be getting left until after he's had his op and recovered enough, either that or I'll be doing it all online at the last minute and hoping there aren't many postal strikes

 

[embojet]

I've almost finished my xmas shopping as I'm trying to get it done before I go back to work next week

 

[nkbapbt]

Wow...he isnt considered high risk?! That shocks me honestly because most of my preemie parent friends are getting the vaccine and their kids are considered high risk.

That's very confusing to me. I thought if a baby had been ventilated within the last year, that they need it...

 

[nkbapbt]

Back to work..oh hun thats tough. Im sorry. I know you've been struggling with it.

 

[Lottie86]

After me having a bit of a whinge at them and threatening to speak to Findlay's hospital consultant the doctor has decided to give him the flu and swine flu vaccines so he gets them on Friday now

Findlay had his appointment with the surgeon yesterday afternoon. The room was quite packed with my oh, myself and Findlay plus the consultant surgeon, Findlay's Gastro consultant, his dietician and 3 medical students!!

The surgeon talked us through the whole operation and it's quite complex. He'll be tightening 2 muscles just under Findlay's diaphragm that are loose, pulling down some of the oesophagus so it's in Findlay's tummy (as he doesn't have enough there) and also tying part of Findlay's stomach all the way around his oesophagus. He's confirmed that due to Findlay's tiny size it will have to be done as an open procedure as the smallest baby he's ever done a lap one on was over twice Findlay's size and he said that was a bit tight for doing via lap!

We did have to giggle when the surgeon was drawing us diagrams of what he would be doing and Findlay was watching the board intently

Provided there is an intensive care bed available the op will be done on November 17th but the surgeon said he will not even consider doing it without an ITU bed as he'll be there for days. Apparently the poor little man will be in so much pain that they will have to do epidurals on him for the first few days so he can't feel anything from the chest down before they move him onto morphine.

He's going to have a big scar from his breastbone down to his belly button either vertically or diagonally bless him. There is a chance that the op could need redoing in the future as they can come undone after a few years but hopefully it will hold.

We have also been warned that the first 2-3 months with the gastrostomy tube will be hard as we've been told they pretty much always get infected and go really yucky due to acid splashing out, YUCK!

He's down to 8lb 13oz now but hopefully he'll start to put it on soon now he's got the new NJ tube as we've now got 2 weeks to get him as strong as possible

 

[bumpsmum]

hi girls

thought Id pop on quickly, Matthew born 33+4 due to pre-eclampsia 3lb 11oz and doing great. Taking a step back from the forums as felling bit low as some of you know, ill prob still linger tho hehe and chip in now and then to see how our super baby's are doing but with the exception of the preemie forum think I get too bogged down in other people's drama and adds to my negativity so need a 'time out' to focus on other things to distract me from whats going on in my head.

Lottie, fingers crossed Findlay's op goes well and will be thinking of you both xx

 

[nkbapbt]

Lottie...I wonder if its different for the type of op Findlay is getting than Lakai's because we had no ill side effects. Maybe you will get lucky?

Lakai has a nasty scar on his back from his PDA surgery. I think when he is older I will tell him chicks dig scars! Battle wounds to the war he won! =)


Is Findlay on a pump for feeding? Or is all gravity?

If the pump, which one?

We had the Kangaroo pump, the big beast! And now the Infinity pump, which is small and nice.

 

[Lottie86]

We are on the Kangaroo pump although hopefully in a few months we can move onto gravity feeds during the day and the pump overnight as it would be nice to be able to go out without the big blue pump rucksack!


He's not doing so well today and spent last night and this morning vomiting browny blood and the hospital said if it got worse to take him in but otherwise keep an eye and phone them tomorrow morning to let them know how he is.
It seems to have stopped now thankfully but they said it's just because his tummy is so inflammed and sore from all the reflux that it has caused it to start bleeding a bit again but we've turned him back down to 26ml an hour which seems to have helped a bit (we wonder if upping his ml per hour caused some of the milk from his jejunum has gone back into his tummy).
His dietician and consultant have said we are basically just keeping him going until he has his surgery so not to worry too much about his ml per hour rate and just get into him as much as he can cope with easily.

 

[nkbapbt]

Awe my gosh that must be frightening that Findlay is vomiting blood! Brown blood equals old blood, so at least you know it's very likely from his stomach because the further it has to travel the browner to black it gets. But still

I hope he gets his surgery soon!

I hated the Kangaroo pump, it was huge and awkward plus on a few occasions it ran the entire feed through in 5 seconds!! Our NICU nurse said that they are actually fairly dangerous to be out in the public for that reason. But they are simple to use. Have you used it yet?

Did they say after his surgery that gravity should be ok? I just ask because Lakai can't handle gravity yet and his reflux is nothing like Findlays.

 

[AP]

*bumpfor the preemies!*

How are we doing ladies!!!!!!!?!?!?