Poorly prem

[nagapie1]

My son was born at 33 weeks and has had a host of difficulties. He came home for Christmas but was readmitted 3 days later with an infection that lead to NEC. Although they have operated and removed the bit of the bowel that was dead, he can't seem to get better. He's stable but not improving and it's been over a week.

Anyone else had this experience with NEC? Also for those of you who had very poorly babies like mine - sepsis, ventilated for a long time, issues with his MRI, NEC - how have you come out the other end?

Congratulations on your son, it sounds like you've had a really tough time recently.
How is he doing now?
Both of my prem twins suffered with NEC although they responded to antibiotics so avoided surgery.
They were both ventilated & both had episodes of sepsis- too many to remember! They both also had an IVH, DD has some ventricular swelling but she avoided a shunt.
They are now 14 months & are doing great for their corrected age.
DS has recently started OT for some stiffness in his arm, but after everything they have been through we are lucky this is so far their only problem.
I hope your DS begins to improve, our long NICU stay showed me that as quickly as prem babies get poorly, they can get better again just as fast.

Sorry that your DS is having such a rough time. NEC is horrible.

My prem DD had several episodes of suspected NEC before having an ileostomy and later a reversal. It took her a long time to turn the corner after both surgeries, and the waiting was pure hell. But it did happen eventually. She also had Sepsis and was ventilated on and off over the months. She's now 16 months corrected and seems to be doing pretty well, all things considered. Some relatively minor lung and feeding issues but she is very lively and happy and people are often surprised to hear what a rough start she had.

Hang in there. I hope your DS is better very soon.

Still on the ventilator a week and a half after surgery. His stoma is working a little and his stomach although still distended is softer so they don't want to operate again, watch and wait.

How is your DS doing now nagapie1? Hope he has showed some improvement.

Yes, he has thanks. His stoma is working well, his infection markers are finally in single digits and he was taken off the ventilator today.

I should be over the moon but now I'm worried about all the other stuff; they want to do another MRI to see if he's sustained any further damage. It's all so hard.

That's great news

It can feel never ending at times, but as you know by now it's all about little steps forward. There is always something to worry about with premature & poorly babies, but I try not to worry about things until they happen. I looked for everything when the twins came home from hospital, but eventually had to stop & just enjoy them, and worry about things as they crop up. I hope you get home soon & the MRI shows nothing to worry about.

Glad to hear he's doing well!

My ds caught gram negative sepsis from his PICC line and he was seriously ill for almost 2 weeks. He pulled through but damage had been done - he has scarred and his lungs have never fully recovered leaving them weak. He was also on the ventilator a long time made worse by the sepsis and almost became dependant on it. He came close to a Trachy too.

He's now almost 17wo and continuing to thrieve everyday. He's still in NICU but you would never have guessed he was seriously ill. He's come out the other end fighting tough :)

Our babies are such strong fighters! You're little boy is a trooper! :)

My son came home on Tuesday and is doing so much better. But my 4 year old has chicken pox! I found blisters on him today and it's going round his nursery. What shall I do? I'm scared the baby is going to be struck down really badly, any experiences?

I had this with my prem baby when his brother got chicken pox. We went to the GP and were prescribed with anti-viral s which stopped him getting infected although he got it a couple of years later

I suggest an urgent visit to get some and don't worry.

Thanks.