Respiratory problems, meconium aspiration, and new to NICU - desperately need support and guidance

[1stTimeMama4-4-10]

My second daughter was born yesterday morning at 8:01am on my living room floor after a precipitous labor. It was essentially a UC because although there edge 3 emts there, no one actually helped me at all really.

My water broke maybe 5 minutes before DD2 was born and was thick with meconium. DD2 didn't cry right away and needed to have some meconium suctioned. We came to the hospital and ever since we arrived she has had breathing difficulties. Her O2 levels drop frequently and her chest has retractions. She had a chest X-ray that showed a spot of something in one lung and her cbc came back with elevated white blood cells so she is now being treated with antibiotics intravenously. She also has a lot of discharge in one eye, so I authorized erythromeyacin (sp).

Because of her breathing issues, they don't want her to eat much bc they are afraid she could vomit and aspirant the vomit. So I can't really nurse her. And I can't really comfort her because that could compromise her breathing too. So here I sit. Totally effing useless. Listening to my daughter shriek became she desperately wants to be nursed and cuddled. Watching as she shoved her tiny fists in her mouth and roots for food when I am not allowed to nurse her.

I know that everyone is trying to do the right thing for my child, and she's in the best NICU in my state, but this is seriously the worst experience of my life.

[IdentityCrisisMama]

Oh, gosh, MAMA!! Huge hugs to you -- I just can't imagine. Can you get some friends and family around you so that you get lots of support right now? Bump for other NICU parents help. 

[Xerxella]

I'm so, so sorry you have to go through this right now. I'm only just learning about the NICU, but I didn't want your post to go unanswered. Would you be open to a pacifier? I know it might not be what you want, but it might give her some comfort in this tough time.

I really can only offer you hugs. I hope this turns around quickly.

[MadelinesMama]

I have not experienced what you are experiencing, but I understand how absolutely horrible it feels to have a baby in the NICU and feel completely helpless. 

I'm not certain why they aren't allowing her to be picked up (I'm sure they have some sort of reason), but you should be able to still touch her.  I think my son was around 7 weeks old when I held him for the first time.  Up until that point he found great comfort in have a hand cupping the top of his head and one cupping around his bottom.  Maybe that will help a little.. just to feel that she isn't alone and that she's in a smaller safe place.  I think the one thing you have going for you is that your child was not premature with a long road ahead of her.  This feels like forever now, but it will be over soon.  Things will improve quickly I hope!!  Hang in there mama..
 

[1stTimeMama4-4-10]

Thank you so much for your replies. Since writing that post I got some sleep and have a much better attitude today. I am deeply thankful that my baby is not critically ill and I feel like a jerk posting Omw forum where the stakes are so high and my problems so trivial. It could be so much worse and it isn't. It stinks that this is happening and some of the nursing staff have serious problems when it comes to bedside manner, but I know this will pass quickly and our little girl will be home with us soon. Thank you for your kind words.

[MeepyCat]

The only worthwhile thing about the NICU is the medical care. I hated every minute too.

It sounds like they're concerned that there's a physiological cause for your DD's respiratory distress, in which case, yeah, kangaroo care may be contraindicated. But it's not great for any baby to be left to freak out either - stress and fury contribute to spells of apnea and bradycardia (or tachypnea and tachycardia) and there are better uses for your DD's energy.

Is your DD being swaddled? If not, why not? Would she be more comfortable on her belly? I know all the Back To Sleep stuff, but I bet they have a zillion monitors on her right now, so if it's ever safe to try, it's now. Can she have a pacifier? Do they have breast pumps you can use, so that you can make sure there is milk to give her when she's ready, and so you can store colostrum? Where's the lighting in the room in relation to her eyes? Can the lights be dimmed? Does she need eye protection? Who is the head neonatologist on her team, and what can you do to make that person come stand next to your baby and talk to you about what's going on?

There are good reasons to hold off on feeding a newborn in cases of RDS and suspected cardiac anomalies, but they should be working towards a diagnosis and a plan of treatment, and possible TPN if they're not feeding her by mouth.

The first few days are the hardest. They are incredibly bad days. However, there are very few of them. They will be over soon. Just hold on.

My DD was in the NICU 32 days. The first two days were very different from the rest, and much worse - ess we could do to help her, more pain and fear and drama. The NICU is never exactly good, but it won't stay this bad.

[fairejour]

My daughter had SEVERE meconium aspiration that nearly cost her her life. She ended up needing a heart-lung bypass called ECMO. It was the worst 6 weeks of our lives. The NICU is a scary place, but make sure you ask questions and get the answers you need. PUMP, PUMP, PUMP!!! My daughter was on her tummy too. She liked it a lot better. Also, does she have anything to look at? We brought in a mobile, and stuffed toys and photos to decorate her little crib. 

[MadelinesMama]

Originally Posted by 1stTimeMama4-4-10 

Thank you so much for your replies. Since writing that post I got some sleep and have a much better attitude today. I am deeply thankful that my baby is not critically ill and I feel like a jerk posting Omw forum where the stakes are so high and my problems so trivial. It could be so much worse and it isn't. It stinks that this is happening and some of the nursing staff have serious problems when it comes to bedside manner, but I know this will pass quickly and our little girl will be home with us soon. Thank you for your kind words.

I hope I didn't make you feel like your situation isn't really really hard to deal with.  It took me a while to word my reply so that hopefully it would express that your journey won't take forever, but that either way it's horrible to be away from your child and watch them suffer.

[1stTimeMama4-4-10]

Originally Posted by MadelinesMama 

I hope I didn't make you feel like your situation isn't really really hard to deal with.  It took me a while to word my reply so that hopefully it would express that your journey won't take forever, but that either way it's horrible to be away from your child and watch them suffer.

No no, not at all. After writing that post last night, I read a few others and it made me appreciate that we are really only looking at 2 weeks in the NICU, very likely less, and it totally broke my heart thinking of how much worse it really could be. I never felt minimized, I hay got some perspective. Getting a few hours of sleep helped a while lot too. I am going to try to sleep for a few hours now, but the update is that the issue last night was really limited to one nurse who was condescending and totally lacking in compassion. The other two nurses we dealt with today were wonderful and really supportive. I spent the last 8 hours holding and nursing my daughter and coincidentally, during that same time period, she has improved pretty dramatically. There is even a glimmer of hope that she will be discharged before the weekend. I so very much appreciative the responses, I have read them all and I will reply when I have a few minutes.

[MadelinesMama]

Who your baby's nurse is makes a world of difference.  It sounds like you have had some great improvement!!
 

[MeepyCat]

I agree that there's no need to be apologetic - other people uhave different journeys, that doesn't mean yours isn't hard.

I don't think it's a coincidence that your dd did better while you held and snuggled and nursed her. That's how kangaroo care works - physical contact with you helps her stabilize her breathing and temperature. Should anyone go back to being idiotic about whether you can hold her, mention your experience.

I am so glad for both of you that that's how it worked out. Sounds like you're on your way out of the woods, and hopfully home soon.