First time mom with baby in NICU

[JScruggs19]

Hi everyone. I wanted to introduce myself since I am new to the forums. I gave birth to first baby (baby boy) on Friday November 26th. I was 31 weeks, 6 days. I went to the emergency room that Wednesday morning with severe chest pain and was diagnosed with HELLP. I was fortunate enough to get the celestone shots into my system for the minimum 48 hours before his birth to help with lung development, and I really think they did the trick because his respiratory system is much stronger than I had anticipated.

It's hard to come home without your baby, as I am sure you all know. I do okay most of the time, but occasionally I feel a little guilty, or I will just need to have a little cry. I feel like I am not up there enough, but its hard to just stop your life and live in the NICU. We weren't prepared for him to arrive yet, so in between visits I am trying to get things ready for him as well as recover from all I went through. I am sure that once I am more recovered (and am allowed to drive again) I will be up there more. He is in an isolette now, so I feel kinda helpless when I am there.

So, if you have any advise on how to cope/be more involved I would appreciate it. Also, if there is anything I need to be more aware of with him being a preemie, I would love to hear about it. The NICU nurses are good at keeping us informed, but is there anything that will be different for him once he comes home?

[kdreher]

My son was a 32 weeker, in NICU for 6 weeks. I lived near the hospital and was on sick leave so I made sure during the day I went often..normally for the posted hands-on time. Does your NICU have him on a schedule so every 3-4 hrs he can be held, fed, kangaroo care? If so I suggest going as often as you can. I learned how to take temp, bath, change diaper. Are you pumping as well? I did for about 4 weeks then my body just gave up, I was exhausted and stressed out.

For home I just made sure things were ready and let my family know that we wouldn't be out very much or have lots of ppl over. No one held my son for many weeks and he never went to a store, etc unless it was the drs. I found that our local grocery store delivered groceries so I'd order online and then would bring them, check out that option so you don't have to go food shopping. My mom would make some meals for me to freeze as well.

I know it's a roller coaster and I have to say I never could see the light at the end of the tunnel..some days I still can't get over that my son just turned 2. The nurses are so right in saying you'll be out soon and life moves on..it does. It's crazy...we just went through this and I can promise you, you'll look back and be stunned at how fast time had gone.

I also tried to take lots of pics, I started an online blog for my family so I didn't need to call them daily or every few days...helped ease the stress. I tried to rest when I wasn't in the NICU too.

[bernadic]

My son was 27 6/7. We spent 3 longs months in the NICU. Take lots of pictures. I looked at the album I put together every time I pumped. I tried to be there when they did rounds so I could hear what the doctors were saying first hand instead of hearing it from his nurse and it was my time to ask questions directly to those in charge of making medical decisions. Also, call the NICU whenever you feel the need. Ours gave us a direct number to the nurses so I would call every 3-4 hours even during the night when I got up to pump. This was especially helpful when I went back to work after 4 weeks so I could save my sick time for when my son came home. Because of work, I could not spend that much time there on the weekdays. Once a week we went to the NICU right after work, stayed for a bit then grabbed dinner at the hospital and then went back for another hour visit. We spent most of the weekends at the NICU. I would read stories and poems to Luke. We read and napped in the lounge chair next to the incubator. Hope this helps. Let us know if you need more specific information. Good luck and lots of well wishes for a speedy discharge.

[JScruggs19]

Thanks for your responses. The hospital only has a few hours during the day when we can't be there, and thats just due to shift changes. They have to be able to talk about all the babies and for us to be there would violate HIPPA. Outside of that, I can be there at 4 am if I want. We are starting to get into a routine of being there for a couple day feedings and a night feeding. He is being fed through a tube, so we aren't really involved in that part, but we do get to take his temp and change the diaper. We are very fortunate that the hospital is only 5 minutes away, so we can take multiple trips up there a day. We are even more fortunate to have a lot of friends who have cleaned some and baked casseroles for us. Its made it much easier the past few days. I am pumping, and so far having a lot of success with it, so hopefully that won't change as days turn into weeks.

I am glad to hear someone else napped in the chair by the isolette. I have often thought about just shutting my eyes for a little while during my visits since I still get worn out easily and the blood pressure medicine I had to be put on also makes me feel tired. He is doing better and gaining weight everyday, though, so hopefully this will all be behind us before we know it.

[danielsmom]

HUGS... hang in there sweetie, it gets easier. My son was 27+5, and I had HELLP and pre-e as well. We got so used to the routine at the NICU for 92 days that we felt strange taking him home, especially without a monitor.

The other girls mentioned great things: pumping, kangaroo time, feedings, changings, rounds, etc. The other thing that I did that I'm appreciating now as I work on his scrapbook was a journal. You'll spend a lot of time pumping, and while I pumped, I wrote the day's hilights down. You can't do much else when you're hooked to a machine. Sometimes it was oxygen levels or number of bradys (which helped to see trends and detect a pneumonia coming on), and sometimes it was funny things he did, keeping the nurses on their toes. It helped me keep my head straight in all the medical mumbo-jumbo and I felt closer to him writing when I couldn't be there.

We were surprised with his discharge day... we thought it would be later, and I thought it was oddly fitting that I was on the last page of this little book on his last day in the NICU.

[JScruggs19]

Thanks everyone. Your advice helped a great deal. I wanted to post sooner, but we have been to busy lately. Our baby boy came home on New Year's Day! What a wonderful way to start the year. He is now up to 5 pounds 12 ounces and doesn't have any medical issues that we know of resulting from his premature birth. I was able to keep my milk up...I pumped alot! And the nurses were great about letting us hold, feed, and change him, etc. as much as possible. It was a long 5 weeks in the NICU, but we made it through, and now we have our hands full with our handsome little man at home.