New here

DuckLover

Hi all,

My name is michelle and our son Caiden isnt a preemie, but he his in the NICU at Childrens Hospital of Orange County with a serious medical issue and I was told this was a good place to go.

He was born April 25th at 8:36pm.  9lbs 5 oz and 21 1/2 inches long via emergency c section.

He was born crying and he was taken to the nursery. My mom went with him since DH is deployed and he was breathing fast but they said that was normal for big babies.  A few hours later he was still in the nursery in an oxygen tent and not making progress so they sent him to the NICU and did a chest Xray.  He has a hole in his diaphragm and part of his intestines are going through the hole.  Because of that part of his left lung isnt developed.  Thankfully he is pooing and peeing fine because i guess most have their bowels affected.  He was transfered to CHOC and has been there since saturday while I am still where i had him untill i get discharged.  I havent held him yet and only seen him for a little while before he was transfered. As I mentioned my husband is deployed to Afghan but thankfully he is on his way home for emergency leave for a couple weeks.  This has been such an exhausting process and im scared, worried, and almost numb. When i get discharged we are going to stay at the ronald mcdonald house by the hospital which is good.

How on earth do you handle seeing your baby in the NICU with all the the tubes and on a breathing machine and knowing your newborn will be getting surgery?  This is all a shock to me because we were told that he was perfectly healthy throughout the entire pregnancy.

Bippy798

Welcome to the board. It is hard but you just have to know that eventually he will be home with you and this will all be behind you. I hope his surgery goes smoothly and that he is home to you soon.

smileychic10986

I'm so sorry for what you're going through.  That must be diffucult - not knowing that was to come.  And also not having DH there with you.  I am glad he is able to come home on leave to support you and meet his son. 

It is so hard seeing LO hooked up to monitors and tubes and IV's.  I hated seeing her get new IV's in daily after her veins would burst.  It took a lot out of me being in the hospital for her for so long.  I had my family and DH to support and help me.  Take things one minute at a time, if one day at a time is too difficult. 

My thoughts and prayers are with you and your son.

ssg73

Welcome, though I am sorry that you had to come to our board.  The nicu is stressful but it does become your new normal so it starts to get easier.  Hopefully you will be able to go see him soon.

I am pretty sure that another mom on here had a baby with the same problem.  I am sure she will chime in soon.

TriciaJoy

My son had a diaphragm issue, though his wasn't quite the same. (His stomach was protruding into his esophagus) He has had it surgically repaired twice.

I can't really speak much on the bowel issue, but certainly dealing with the NICU and surgery is terrifying. I'm sorry you're going through this.
Really, the first week is just absolute survival mode. Do whatever you need to to get through it. Don't expect to understand or accept everything immediately. I promise you'll learn things quickly and while you never REALLY get used to it, you learn to deal. It's just a matter of time.

At1stsight

Congrats on your baby boy. I'm so sorry that he's in the NICU in a different hospital from you. I got to hold DS for literally 5 seconds about 10 min. after he was born and then I didn't get to hold him again for 5 more days. It's very hard and such an emotional time that you're going through. Like you mentioned, DS was completely healthy and we were having a completely normal pg until I went into labor at 34w4d; the shock is awful.

When I first saw all the things attached to DS, I was really scared and freaked out that the number of lines meant he was in really really bad shape. Turns out 3 of them are just for monitoring his heart rate and O2 saturation - they weren't doing anything to him, just resting on the skin to keep a constant log of his vitals displayed. After a while, you won't even notice them and you'll just see HIM. As Trish said, just try to survive the first week knowing you won't understand EVERYTHING that's happening. My best advice is to ask about what you can do to be involved - I didn't realize I was allowed to change diapers, take his temp., have my hands in the incubator, etc. until a nurse asked me if I wanted to. I felt distant and disconnected from him by the incubator and tubes the first time I visited him, and taking part in his care made a world of difference. :hugs:

LWilli35

Welcome to the board!  I really wish you had no reason to be here, but all of the ladies here are so very helpful.  I'm sure you'll find so much comfort here. 

 As for how you're feeling now, just take everything in small increments.  I remember a few months ago when we were just taking everything minute by minute or sometimes second to second.  Be there for your son as much as you can.  Talk with the nurses and see what parts of his care you can participate in.  Be involved as much as you can.  He will definitely know you're there and will respond to you voice and touch. 

Hang in there...it gets better once you get into a routine and digest everything. 

Congratulations on your new little one and I hope your DH is home soon!

stfaught

Oh! Bless your heart!

I am so sorry you have to be where you are. Even knowing Eliza was going to be in the NICU and trying to be as prepared as we could, it was still very difficult to actually experience and live it.

Know that he is where he needs to be and that it is all temporariy and that he WILL be home and healthy soon.

msalinardi@live.com

Congrats on the birth of you son! I am so sorry that you are going to have to spend time in the NICU and have to deal with surgery. I will keep you and your family in my thoughts and prayers!

lemen99

thoughts and prayers to you - hang in there!   !

I hope LO is oK and home soon !