I need you ladies - LONG

BriansBride825

I need you, that have been there, to tell me that this will all eventually end. What was supposed to be, "at most" a 14 day stay because "he's a 34 weeker after all," is now at 24 days with no real end or closure in sight. My son, Brady went off oxygen 5 days ago - he lasted four hours. Then about 2 days ago he went off again and he seemed to be doing great. This time they were talking about car-seat-tests and going home on Tuesday (one week later). That has all vanished today, episode after episode - bradys and desats into the 60's. I couldn't help myself when I held his hand when she put the tape on for the cannula I cried. I had to leave and try and pull it together just so I could feed him. The neo said we can try him one more time on Monday but if that doesn't work to think about bringing him home on oxygen & monitoring or committing to at least another week from the time of failure to try again. If that failed she said it would be time to go home with the o2 (pretty much at 40 weeks). I tried not to get to hopeful when they said next Tuesday but somehow I must have because I am pretty much devastated. He is only on micro-flow -- it seems like such a small amount. I feel like I am falling apart. I worry constantly that he has some sort of syndrom (5 of his fingers are not formed correctly - one ends at the knuckle and the other 4 are tapered with hardly a nail at all) even though the chromosome test came back okay. Now I worry that whatever caused the birth defect is what is delaying his progression. The doctors assure me it is not but I can't stop my mind. He is a 34 weeker...I haven't read other experiences like this for a 34 weeker. Many babies have come and gone from the NICU, several of them born before him (gestationally) and I KNOW you can not compare but the jelousy that we can not go home is still there. I just don't know how to keep it together. There is no support offered through my hospital. Should I get a therapist? Thanks for reading through all this. I just don't know where else to go.

mhop

I'm so sorry you're going through this.  I don't know much about 34 weekers but wanted to offer you ((hugs)).  I know it doesn't help to hear that every baby is different and I know how hard it is to see other babies come and go from the NICU while you're still stuck there.  I hope your DS comes home soon!

lstaylor73

Therapy can never be a bad thing.  But I will say that I was just as panicked as you were when I had to bring one baby home on O2, just a puff like your little guy.  But now that it has happened and he's been weaned from the O2 it's all not so bad.  You can read my blog to see how our O2 set up was at the time, about my anxieties, and please feel free to email me at

Taylo2Babies at Gmail.com 

if you have questions.  We are in the hosptial right now because both boys are not eating and maintaining their weight (totally unrealated to all prior O2 issues) and the internet connection here is really horrible.  But I will respond within 12 to 24 hours.

If he's on just a puff at home then I'm sure he will figure this all out in his own time, and it will be sooner than you think.  

preemieparent

Sending many hugs your way.   I'm sorry that it has been a rough and unexpected road for you.

Both of my preemies were born earlier so I can't give you a specific 34 weeker example but I do know that every baby is different.   That's part of what makes it so hard.  There have been babies born even later that end up with issues and babies born much younger that cruise through without any trouble.   Unfortunately there often isn't any explanation for it and no way to predict what will happen.    And boys tend to take longer in those areas than girls. 

My daughter was in the NICU for 5 1/2 months so I know how hard it is to see other babies go first.   We said hello and goodbye to many parents/babies while she was there.    It's impossible to not feel jealous each time.  

Personally I would wait the extra week so that they can try again.  Some babies just need that little bit of extra time.   It may not work and he may come home on oxygen however it's worth a shot.  Have they tried giving him caffeine to stimulate him?     That can help some kids.    And if he does have to come home on oxygen than I'm sure you can handle it.  It sounds like it may not be for very long.

If you think it would help to see a therapist than I would go for it.   Many NICU parents seek therapists/therapy to help them deal with all of the emotions that come from having a preemie. 

Take care!!

KellyMichelle

I'm sorry you are going through this.  It's hard when you get told your baby is ready to go home and then get delayed.    I really don't have any advice, but we are all here for you whenever you need support or want to vent.  I don't think it would hurt to see a therapist, the NICU is a stressful and emotionally draining situation.  All the feelings you are having are completely normal.  Try to take it one day at a time and know that your baby is growing each day and will be home in his own time.

LULUNJ

My prayers are with you.

I know when my baby was in NICU it was like one step forward than three steps back. than all of a sudden things were moving in the right direction. hang in there. we have all been thru this roller coaster of emotions. I would never wish this on anyone ( the feeling of having a baby in nicu and feeling helpless). My baby was also the veteran of nicu. i saw moms come and go with there babies. i would update my husband everyday when another baby went home. it seemed like a long running nightmare. but than i began to really think about it and say to myself.....this is where she needs to be right now and if anything happens she is in good hands. I started to feel more comfortable being there and talking to the nurses and doctors..bringing my family there on a regular basis helped. When the time is RIGHT he will go home. Best wishes.

ijack

I don't have much advice, but one day he WILL go home, hopefully sooner rather than later

Hugs to you!

mcdev

If you are given the choice, I would stick it out the extra week in the hospital. ?Preemies have their own way and timeline of doing things, but once that ball starts rolling in the right direction, you wouldn't believe how far they can come in a short period of time! ?I know it's easier said than done, but try real hard not to think of the worst case scenarios. ?Right now your son is in a very safe place with very educated and trained professionals taking care of him and you have every reason to believe that there are no links between his birth defects and his breathing difficulties. ?Time is priceless to a preemie, no matter how premature he really is. ?Given just a little extra time and there is no telling what your little boy will be able to accomplish!

If you do end up coming home on oxygen, feel free to page me. ?My daughter (like many others on this board) is on home oxygen.

Good luck and congratulations on your baby boy!?

AviatorJJ

from what i understand 34 wkrs are tricky. some breeze right through the nicu some take a lot longer. my son was the total whimpy white boy. he just could not get over the A's and B's. to the point where they still had to bag him at 36 weeks to bring him back. so frustrating! he did come home on supplemental o2 and monitors. i was nervous at first but easily got the hang of it. keep your eye on the long term goal and remind yourself that no kindergartener is still in the nicu! lol!

RubyRed7

I'm so sorry! My DD was born at 32 weeks, so things were a little different for us. But she kept having bradys everyday, but was off oxygen. We took her home on a monitor and after two weeks at home, she never had another event again! That was a few days before her due date...

If there is anyway to take him home, oxygen/monitor etc... You will do it. He will get better, and I hope its very soon!

april062604

i'm so so so sorry. i knew with my 26 weekers that their stay would be long and hard, but having a 34 weeker you think it'll be a quick "feeder and grower" nicu stay. ?all i have to share is the story of my now good friend who i met in the nicu. ?her son, a 33 weeker, had a hard stay filed with desats, A's and B's, blood transfusions...and he was in till he was almost 40 weeks gestation. ?don't sell your son short. ?he should still be inside...as far as i can calculate he's 37.5 weeks, right? ?gestational age is a very good indicator of potential nicu stay, but sometimes babies need to stay till theyre closer to 40 weeks...or longer. ?i know how badly you want him home; but with his episodes it's better that he is where he is. ? you want him home with you when he's ready...and he's not ready yet. ?he'll have a growth spurt where his brain and his lungs and his heart all start talking in a much smoother way, but for now he's still figuring it out. ?have faith in the results of the chromosomal tests. ?he's a preemie, and you'll always wonder about the "what if's". ?take it one day at a time and focus on what he can do...afterall he should still be in your belly and look at what he's doing for himself. ?stay strong; match his strength.

-april?

gymrat

((HUGS)) I'm sorry your little guy (and you) have to go through this.

I don't have any specific info but I do know how it feels to go one step forward and 3 steps back. My daughter didn't come home until a couple days before her duedate. She had feeding issues though and we had to take her home with an NG tube. It was so unbelievably frustrating so I know how you feel. 

Hang in there. We're here if you need us. 

Denesdia

I am a new mommy to NICU scene and I just want to say that the support from all of you is wonderful.  Reading these posts made me cry a little with hopeful, heartwarming tears.  Know that we are all in prayer for each other, and we are sending good karma to those who are struggling. 

Mrs.DMC

I know you are probably so sick of hearing this but "Hang in there." I am sure you probably keep getting friends and family asking "When is he coming home?" That used to bug me because I didn't know the answer myself and having to answer that question irked me to no end. I eventually isolated myself and stopped answering the phone calls. It actually helped.

I also got mad when a baby who was born after DS went home before him. I seriously thought "hey, thats not fair, we were here first." funny, because it totally does not work that way.

I dont know if this will help or not but I actually wished DS was sent home on o2 and monitoring even though he didn't need it. It would have given me a little piece of mind those first few weeks.

ShanaNChris

Having your baby in the NICU is so hard, no matter what week they are or how long they stay. I don't know a lot about 34 weekers, but I know how hard it is to see other babies get discharged and wonder when it will be your turn. And I know what it's like to get your hopes up, only to be letdown. We are all here to help you. If you feel like you need to see a therapist, you should try to talk to the social worker at the hospital, it wouldn't hurt. I still see a therapist and my DD is 9 months old. Hugs to you!

RRHsMom

I know how you feel when you say that it is frustrating seeing younger babies come and go.  The room across from ours had someone new every few days!  I was so sad everytime I could hear the baby across the way cry when I had yet to hear my little one's voice.  I had a 36 weeker (we even thought I was 37 weeks before he was born) so even ending up in the NICU was a shock that hit us hard.  They kept trying to ween him off of his oscillator and it was so frustrating leaving the NICU that night thinking everything was great and then getting a call in the middle of the night to say they had to bump him back up to 100%!  However, we were told by an experienced nurse that older babies get sicker faster but when they start to rally, they do it fast.  That held true for us so when the time is right for him, he may just surpirse you with how fast he improves.  I just learned it had to be in HIS time as hard as that was to accept.