Having my first "bad day" :(

Mrs. Alice

Up until this point both my boys have been doing pretty well.  A few days ago, they tried them both on cpap but they just weren't ready yet so they have stayed on the vents with low settings and have done really well.  Today Owen, my little 2 pounder just doesn't  look as good.  Not as active as he usually is and having more bradys and desats.  His hematocrit is 26, so he is getting a blood transfusion.  His CBC was otherwise normal, not indicating infection but they checked blood cultures anyway.  His little tummy is really distended, but they xray just shows air.  I'm so worried for him.  The thought of him having an infection or nec terrifies me.  Thanks for letting me vent, I know you can all relate.  I'm trying to stay positive, but all the worst things come to my mind sometimes.  I'm just praying that he will feel better after getting the blood.

kck329

I'm so sorry you are having a rough day. I know you've heard it before but the NICU journey is like a rollercoaster and your emotions will be all over the place. Watching your babies struggle is SO hard!

Transfusions are not uncommon in the NICU-they draw so much blood for tests, its hard for the babies to keep up. Hopefully all Owen needs is a little help and he will perk back up. 

You are doing a great job being there for both boys-it makes such a difference that you are with them, talking to their doctors, and just being present.  I'll keep you and your boys in my thoughts, keep us updated!

OscarQ

That is fantastic that they tried them on CPAP!  I'm sorry they failed back to vents but still, less than 2 weeks old and they're even trying them on CPAP - awesome.

Kevin had so many blood transfusions in the hospital that I lost count.  As the PP said, it is so normal. And hopefully he just needs that little pick me up and he'll be back to his normal self.  IME they're always going to think NEC when the belly is distended and it's hard to put out of your mind.  I hope the transfusion is just the kick he needs to get back to normal.

Chitown chic

I'm so sorry you're going through a rough time. My little girl's belly has been distended for most of her NICU stay, and she's dealt with both an infection and a NEC scare (luckily, this turned out not to be the case). She's also had several blood transfusions as her hematocrit has been hanging out in the mid-20s. Have they discussed EPO shots with you at all? Our little girl didn't get these in time to avoid her first transfusion, but later on they started them and they have definitely helped boost her RBC count and improved her energy level. I will keep you and your family in my thoughts and prayers!

neko621

I was just thinking about you and wondering how you and your boys were.  I'm sorry you are having a bad day.    It sounds like your little guys are doing pretty well though!  I know it's scary.  My two have had 3-4 blood transfusions each.  They each had one yesterday.  (They always look so much better after getting blood, so hopefully you will feel better when you see him tomorrow!). We have had some pretty rough days over here lately too (with just about everything you mentioned if your post---transfusions, not being ready for their new breathing machine (both were on cannulas, but have had to go back to their siPAPs since they got too worn out), lots and lots of desats and "a's and b's"), but apparently what seems scary and bad to MH and I is just "typical" preemie stuff---well that's what we have been told. As much as I try to keep that in mind, I'm still a wreak!  

Our little Teagan had an infection a couple weeks ago (we were also told this is very typical for preemies----I didn't care, and was a disaster anyway).  They were able to start her on antibiotics right away so she kicked it quick.  Hang in there!  I'm sending you and your little guys lots of good vibes! 

katie4253

I'm sorry you had a bad day. 

Gabe was born later than your little ones, but he ALWAYS had a distended belly.  I had so many doctors scare the crap out of me about nec, but in the end...it was just the way his little body responded to feeds.  He struggled with feeds.  As he got more adjusted it got better, but it took at least 4 weeks (he was there for 6).   It seemed like once he started bottling, he did better. 

Denesdia

I am sending extra prayers your way today.  Stay positive as best as you can.  Just know that you are in the best place getting the best care for your babies right now.  My DD is a NEC survivor and we saved as much of her little bowels as we could because the NICU watched her every cue, not just her little belly.  You are doing great, mama.  Stay in tune with the tx. team and have hope for you and little one combined. 

livnluv2010

Sending prayers

etoyama

Huge (((HUGS))). I'm keeping your precious boy in my T&Ps.

JakesBride07

Sending prayers your way. I remember those days all to well. I can't tell you how many transfusions my twins got.

Hopefully it is nothing and Owen will he back to his old self in no time.

damabo80

Huge hugs

lemen99

T&P!

Mrs. Alice

Thank you for all your kind thoughts and words!  Owen looked much better last night and this morning.  No growth in is cultures and his little belly looks better.  It was just so hard for me to hear negative news and see him looking bad.  I guess this is just part of the NICU roller coaster!