Help/Support

lbittma80

Hey,

My son Freddy was born 6/7 at 34 weeks.  He's a typical "wimpy white boy" with lung and feeding issues.  Just wondering if you guys can give me some insight on when your LO was finally released.  I am VERY frustrated with the hospital we're at right now and just our situation in general.

I've been lucky enough to "room in" for the past week (past my discharge) and I've decided to pack up and head home.  My 11 y/o needs me and I'm going crazy here at the hospital.  I understand that him leaving is contingent on his progress, but they aren't giving us updates and what they intend to do to get him out of here.

UGH....any advice or support is welcome.  Thanks.

KellyMichelle

I'm sorry that you are going through this.  Have you asked the doctors specifically he needs to be able to go home?  My DS was a 26 weeker and went home at 37 weeks.  For him to go home he had to be able to maintain his temp, be off of oxygen, be on full feeds (8 bottles a day) and pass a sleep study.  Sometimes knowing what you need to accomplish helps.  It is a rough road and I know you are ready to have you baby home though.

kamcfarlane

i completely understand your frustrations. i had a lot of issues with our NICU as well. all we had left to accomplish (he could keep his temp up and breathe just fine) was taking all feedings by mouth and every single person i asked had a different explanation of how we got to that point. the doctors, the nurses, everyone. i could not see any foreseeable way that DS would ever get out of the NICU when every 8 hours someone new was in charge of the "plan" and none of those "plans" even closely resembled the "plan" the doctors were giving me. i figured that the more we tried to nipple feed, the more likely he would succeed. turns out it just made him tired and he'd start having bradys.

and then one day, he figured it out and we didn't need anymore plans. i swear, one day he was taking 4 nipple feedings and the next day it was all. 2 days later we were home. your LO WILL get it and it WILL be all of a sudden. for us, it took DS (another wimpy white boy!) until about 37 weeks, which seemed like an eternity. now, there's no stopping him.

good luck and hang in there!

 

clyoungsey

I have found that the only real way to get updates is to ask or demand it.  At first we weren't getting the updates we wanted and needed, so we just started asking each time we went in and call each night.  They have come to expect it and now readily give us the info.  I also read all of their progress charts on weight and feedings on my own when I go in as they are sitting on the desk and it is MY kid.

GL hun, I know it's not fun or easy!

na24

We're having the same problems right now, or at least we were until yesterday when we started being more demanding of information and meetings with the neonatologists (who had basically ignored us all weekend even though we were right down the hall in my room, and who have never called us ... thank goodness for our pediatrician who actually communicates). ?

Our plan is that we have dropped breastfeeding attempts right now because they make the girls too tired. ?They're getting 5 bottles of EBM and have 3 gavage feedings, and then depending on how they do with those, they'll adjust either up or down from there. ?They also have to have their temps stable at 28 degrees for two days before they can be moved into an open-air crib. ?And then they have to keep gaining weight. ?We're looking for 20 to 30 grams per day. ?If they do all that for a few days, they can come home. ??

Ask your neonatologist(s) about weight gain, breathing, temperature control, and feedings and what specifically needs to be happening and for how long before going home is on the table. ?Then it'll give you something to feel like you're working towards. ??