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Re : are they just trying to keep them "grounded"?

Posted: Wed Mar 24, 2004 10:30 am
by for faith
Don't want to scare you, but NICU is very difficult and problems can occur at any time. My daughter was 3lbs 3ozs. at birth and did fine for 2 weeks and then got an intestinal infection (NEC), she didn't make it (she died at 25 days). There are so many things that can happen to premie, I think they just don't want you to be totally blindsided if something bad happens. You just have to judge each day how your child it doing and hold on to the good things. You definately should be positive and hold onto that your baby is a fighter but know that they just don't want to paint to rosy of a picture.

You are all in my prayers.

mommy to:
Tyler - almost 4 (36 weeks, PIH)
Angel baby - 1/20/03 (11 weeks)
Faith Kristine - 1/5/04-1/30/04 (30 weeks due to severe preeclampsia, passed due to NEC (intestinal premie complication) & Sepsis)

Re : are they just trying to keep them "grounded"?

Posted: Thu Mar 11, 2004 02:43 pm
by robynh
My ds was also a 27-weeker and we experienced a lot of the same "negative vibes". The docs and nurses never wanted to celebrate with us when we hit a milestone. I think they are just trying to do their jobs and be realistic. These kids are extrememly fragile and can change in seconds. They're susceptible to so many problems...infection, NEC, breathing problems, IVHs, etc. I'm sure that at some point in their careers, they've led a parent to believe things are going well only to have disaster strike.

When Ollie was still in the NICU, I learned to evaluate his progress on my own. I read every slip of paper that they put in his chart. I knew whenever he was having a head u/s or getting his vision checked. If I didn't understand a lab report or note from the doctor, I would ask. Your family doesn't need the doctor to tell you that this kid is a fighter and is going to do great things!

Mom to Oliver, 27-weeker,3/13/02, and Max, FT,11/25/98

Re : are they just trying to keep them "grounded"?

Posted: Wed Mar 10, 2004 08:02 pm
by aimeejane
I know what you mean, Meg. I think it's pretty bad that they can't let you enjoy the good parts. Our doc was careful to say, "We can't guarantee anything," but the nurses usually focused on the positive, while being sure to be honest. Frankly, I don't know how they found that perfect balance; I can't imagine being able to do so in that position.

I think you're doing the best thing possible - lots of research and talking to people who have BTDT. Keep up the good work!

Georgia State Coordinator

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia) (Pswd: ilovemommy)

Re : are they just trying to keep them "grounded"?

Posted: Wed Mar 10, 2004 01:51 pm
by angelkat
Minute by minute things can change in the NICU. I can remember just sitting and biting my nails waiting for morning blood gasses or even morning blood work. Doctors and Nurses can not give any heads up on which way things will be. Each preemie is different and no two preemies take the same path. Sure the doctors know what to look for but you can never tell what might happen. I had so many doctors just tell me let's just wait and see (and if you know me I am not the wait and see type of person)Even a few times we had the "death talk" but each day Katlyne just proved them wrong until one day things started to go down hill, and down hill they went. At that point (3 1/2 months later) I knew in my heart that Katlyne was done fighting for her life and the doctors and nurses became like family to us all knew the end was near. What I am trying to say their is only one person that knows the outcome and that is our Lord. He is the real healer.


Mommy to
Ky (11)
~i~ Katlyne(12/9/02-04/02/03) and little bud (Due 09/11/04) ... N=79068509

are they just trying to keep them "grounded"?

Posted: Wed Mar 10, 2004 12:10 am
by meg
It sounds like the NICU docs and nurses are trying really hard to keep my sis and her DH from getting confident, etc. To me it sounds like Ethan hasnt had any major problems. No blood transfusion, infections, real close calls ,etc. But they docs/nurses keep saying things about him being so sick. Yesterday her DH said " well other than these few things you mentioned he is doing pretty good, right?" and the nurse said "no, we dont even consider him stable yet". Then this morning everything was good! His BP was better so they were able to take him off his meds, he started peeing again, his O2 level and blood gases were good and they had not new problems or worries. My sister said " so he's doing pretty good them?" and the nurse said "well, for now but that could all chance in 30 mintes, hes still a very sick little boy". which made my sis start crying again[V] WHy couldnt they just let her be happy that it was good right now? I guess they just want to make sure she understands the seriousness of it all, but she does. I wish they would at least let her be happy when things are good, KWIM?

Will 2-6-00 ( PE at 35 weeks)
Elizabeth 7-3-01 ( NO PE)
#3 EDD 10-25-04
Proud Aunt to Ethan born 27.5 weeks weighing 1lb 8 ounces! Our little fighter!