25 week preemie NEC and other problems

Amy - posted on 04/09/2012 ( 4 moms have responded )

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My son Xander was born March 2, 2012 at 25 weeks 2 day he was 1lb 12oz and 12.5 inches long.. He has had many issues grade3/4 IVH which has caused many seizures, 2 lung bleeds, many blood transfusions, severe edema, kidney problems, still has a PDA, and now after 7 weeks of being in the NICU he has NEC.. and he is also still on the oscillator they have not tried to wean him from it.. The Dr. called me this morning about the NEC because he just started showing signs of it around 4 this morning they put in a tube to drain stool and toxins and gave him a blood and platelet transfusion.. they said they arent sure how much of his bowel and intestine has been compromised and there is really no way to tell until 24 hours has passed because they are too afraid to operate on him. they are just going to monitor his platelet counts to see if they get low again and if they do it means there is a big section on intestine that is bad if they dont only a small portion is bad and maybe it will correct itself.. the Dr. told us that they have stopped evaluating him as when will he get better and evaluating him as what else will go wrong and they just arent sure if he will make it out in the long run of things.. Im starting to lose hope here.. has any one else experienced these things and came out ok?

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Eli - posted on 04/19/2012

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By the way... Doctor's ALWAYS give you the worst case scenario (to save their asses). I always felt nurses gave you a more accurate idea of what was going on and the outcome of things. Talk to them more! They're ones that are there day in and day out with your baby. And don't be afraid to speak up if you don't agree with something they are doing or telling you. He is YOUR baby... not theirs (though sometimes it might feel like he is).

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Stephanie - posted on 04/30/2012

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I had my 25 weeker girl on March 14 2011. She weighes only 1lb 3 oz. She had PDA issues, but closed up on her own, grade 3 IVH as well, that resolves on their own, and she is still known in the NICU as the JET baby. She was on the JET ventillator for 32 days (which is the longest they have seen) after that the regular vent for 78 days. She also had level 3 ROP that also resolves on its own, not to mention 9 blood transfusions. We also had a meningistis scare. She is now a happy and healthy 13 mo old actual (10 mo corrected) A little delayed in gross motor skills but other wise doing great! I know how hard it is, and how helpless you feel. You just want to make it all ok. But the truth is all you can do is stay positive and remember for every step forward, there could be 2 steps back. Just take all those good days and hold on to those during the bad days. Keep us posted

Amy - posted on 04/29/2012

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Well since his NEC surgery he has done a bit of a turn around the last few days they have been considering taking him off the oscillator vent and putting him on a regular vent but when they went in to check on him he had bad blood gases and his hemoglobin got low so the pressure on the oscillator went back up and they had to give him another blood transfusion so they are waiting a few more days to see if he can show them he's ready for the switch. they want to do the PDA surgery in the next few weeks which is why they are trying to get him on the regular vent. Then after the PDA surgery he'll have atleast 2 more surgeries for the NEC because they have to put all his intestines back together. He is still having issues with the edema he is 4lbs 7oz right now when he should only be around 3lbs. and he has jaundice from the TPN.

Eli - posted on 04/19/2012

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Hi Amy,

I'm so sorry you're going through this. Trust me, I know exactly what it feels like! I have not one, but TWO 25 weekers. My boy/girl twins were born at exactly 25 weeks. Emi, my baby girl, had brain bleeds and seizures, was on seizure medication. She had blood pressure issues, was on the occilator and the venilator for two months, had to have PDA surgery. At some point I thought we might lose her, but we remained strong and just took it one hour at a time (yes, in the NICU things have to be taken hours and minutes at a time). She overcame EVERYTHING. Her brainbleeds resolved on their own, the seizures eventually stopped as she strengthened, and the PDA ligation (which is a surprisingly simple procedure) took care of her blood pressure issues. She is now a HILARIOUS, very bright and adorable one year old!!! I look at her and it seems incredible to me how far she's come. Ian, my baby boy, had an easier time at the NICU, but still required a PDA ligation and had the usual breathing issues, infections, transfusions several times a week, a NEC scare... you name it!

When you're knee deep in the NICU world, it's so hard to imagine life outside of it... but think positive because the outcome MAY surprise you! These little ones are SO strong!

So you have an idea of their outcome: Emi was 1 lb 8 oz, 11 1/2 inches and is now (at 15 months actual, 11 1/2 adusted) 17 and a half pounds about 28 inches (she's my tiny one). Ian was 1 lb 12 oz and measured 12 1/2 inches. He is now 19 1/2 pounds and 29 inches. They're both small for both their actual and adjusted age, but SO healthy! They are active (sometimes too much so), talk/babble up a storm, laugh, play... Ian started walking by himself yesterday. Emi is still cruising, but practicing. The only issues that I've had so far are reflux (mainly with Ian... which is pretty much gone now), feeding issues with Emi (she gags with pieces of food. Only likes pureed stuff). That's it! Developmentally they're great... just where they should be for their adjusted age.



So my advice to you is... remain as upbeat as possible (the baby can sense it), talk to him, be as involved in his daily routine as possible. Give him a reason to fight through it all (being with his MOMMY!) My best to you and keep me posted!!!!

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