What's Your NICU Story?

[penguin129]

Let's share our stories.

Questions for thought:

How was your pregnancy?:

If you found out ahead of time that you would have a preemie or NICU baby, how far along were you and how did you handle it?:

Birth experience:

NICU experience:

If they are out of the NICU, how are they doing?: 

Do they see specialists?:

Any delays or other issues?:

How are YOU doing? PPD? PPA? PTSD?:

ETA:
*** Copied from a previous thread***

[penguin129]

How was your pregnancy?:
It was pretty uneventful expect for backaches and a two trips to the ER. I had a sciatica flare up in June (can't remember how many weeks I was right now) and then had to get meds to stop contactions at 36 weeks.


If you found out ahead of time that you would have a preemie or NICU baby, how far along were you and how did you handle it?: I didn't know at all. I was supposed to have a "gentle" c-section and got something very different.

Birth Experience: My birth experience was very traumatic for me. I had a C-section with my first, AG, but for some reason it wasn't so scary then. Maybe it was because it was night time and all the lights were dimmed. This time the lights were super bright and I was instantly scared. My spinal block hurt so bad I was cold and shaking the entire time. All I wanted was my husband to be in there with me. Once they opened me up (planned C/S) they had a hard time getting HL out. They even commented "she's really in there". Once they took her out she didn't cry. I asked if she was crying and they lied to me and told me she was (probably to keep me from panicking). They started to close me up and I saw one, two, then three doctors and nurses huddled around HL. I knew it wasn't good news. They told me they had to send her to the NICU. I was left alone in the OR being closed while H went with HL. I cried so hard and the people closing me up asked me to stop crying so much or to settle down. That wasn't even remotely a possibility for me. I was promised the whole time I was pregnant that I would have a "gentle" c-section this time around and be able to hold my baby while they closed me. I was sent to recovery alone and didn't even get to see HL for almost 2 hours. It would be another 24ish hours before I even held her. In between I had bad reactions from the pain meds they gave me.

NICU experience: HL was sent to the NICU for breathing problems (TTN). Once those resolved she had problems holding down food and was spitting up. They stopped feeding her for almost 24 hours. She got jaundice from not eating and had to get photo-therapy. She started eating well so they took out her feeding tube only for me to find it back in the next time I visited her in the NICU. That was devastating because I was told that we would be taking her home that day. The day after that the feeding tube was out again and I was told we would go home the following day. They tried to give me her discharge bead, but I wouldn't take it. Thankfully after 8 days we took HL home to meet her sister.

If they are out of the NICU, how are they doing?: HL is doing well and seems to be hitting normal milestones. We started tummy time with her and she shows us her tongue. Her 1 month check up is tomorrow.

Do they see specialists?: We have Home Nurse from Healthy Start that comes in to see HL and I every 2 weeks. She was just here on Monday.

Any delays or other issues?: Not that I know of

How are YOU doing? PPD? PPA? PTSD? I have anxiety issues and am pretty sure I have PTSD. My first daughter had hand, foot, and mouth disease during HL's NICU stay so I was afraid to give AG hugs when they brought her by the hospital to see me. They had to spray and clean everything at the Ronald McDonald House after we found out about the diagnosis. Things didn't go how I planned at all when HL was born. Then no one seemed to care or even want to understand what it was like for me in the NICU with nursing, bottle feeding, and pumping. My cousin was the only one who came to see me and help me out. She made sure I was ready to visit her. My in-laws showed up right as we were about to leave and go to Target so I could get some medicine and stuff and I had to put our trip on hold because they came. If it would have happened now there is no way I would let that happen again. I should've stoof up for myself. I had already said I wasn't going to the 2 pm feed.

Apparently I have a lot of feels still.

[missi]

penguin129, ~huge hugs~ PTSD is completely normal, especially when so many things go so backwards from our wishes. Add in trying to balance being there for a new child who really needs extra, yet keeping things normal for the first born.. yeah. The feels will be around for a long long time, and that is okay.

[missi]

How was your pregnancy?: Sticking with the one that landed me in the NICU for 3 and four months. It was terrible. We're pretty sure we lost a third undeveloped at 10 weeks.. which started the whole ball rolling. I had massive bleeding on a Sunday morning which landed me in the ER with the doctor telling me that it was only a matter of time before the twins passed away and I miscarried. Two blood transfusions and 24 hours later, they let me go home, still pregnant. The twins never stopped dancing during the ultrasounds. I immediately found a new doctor.

At 16 weeks I was put on full bedrest at home. My cervix had gone back up to 2.2 from being dilated to dime size at the 10 week incident. From there though, it just gave way, slowly enough that the twins are here. By 24w2ds they tossed me in the hospital.

If you found out ahead of time that you would have a preemie or NICU baby, how far along were you and how did you handle it?:

We were hoping for 30 - 32 weeks.. with how badly the pregnancy went though.. I think I was just happy they were progressing. Bedrest was pretty rough.

Birth experience: At 26w2d I saw blood and what looked like a mucus plug.. and the next morning my doctor checked me and found twin A's toes sticking out of my cervix. Into an urgent c-section I went.. my H barely making it to the hospital. I did hear the twins mew as they took them out.. in the opposite order they were supposed to be born in vaginally ~chuckle~. It was another 10 hours before I got to see them.. and two more days before I could hold twin B.

NICU experience: Twin A spent four months in the NICU, two weeks of that at another hospital near the beginning. I was always optomistic.. to the level that the nurses took it upon themselves to tell me "<Twin A> is NOT doing well. You need to understand this." Ugh.. stupid day shift nurses did not like us going to see the girls at night.

If they are out of the NICU, how are they doing?: Amazing. They have no health issues and no delays. In fact, they're advanced at almost three years old. I guess twin A knew what she was doing when she stuck her toes out? ~sad attempt at smiling about this experience~

Do they see specialists?: We still see a cardiologist once a year for twin B's heart. I don't consider it a health issue because it will never affect her, but she has a teenie tiny PDA that they are completely unconcerned about. We DID have an infant teacher for over a year and a half that came to the home along with a physical therapist for about seven months. We were sent to a neurologist because they thought they're heads were big.. turns out that runs in the family For the first six months out of the hospital, I think we had one to two appointments a week. It was exhausting.

Any delays or other issues?: Miraculously, no.

How are YOU doing? PPD? PPA? PTSD?: I still deal with PTSD here and there. I'm glad I can recognize it. I lose my temper too easily when twin A refuses to eat her dinner due to the stubborn eating issues that kept her in the hospital a month longer and gave her an extra belly button.

I should add here that the issues we had with the NICU were mainly that the day shift nurses didn't think we were ever around. We had two older girls at home to take care of during the day so we'd go after we put them to bed and spend 3 or 4 hours a night in the NICU. Twin A refused to eat on the nurses schedule of either every three hours or ad lib. Turns out she wanted to eat every two hours.... figured that out a week and a half into having her home. .. and the worse one, the NICU discharge nurse wanted us to put in a ton more time in the hospital even though Twin B was already home.. like 24 hours straight to learn how to use the g-tube. The doctor that was on shift when it showed up watched us immediately use it with no problems and discharged us... so, the discharge nurse felt stepped on.. and called CPS on us... with things that the CPS person immediately saw were lies and dismissed the whole thing. Lovely to go through ALL of that and have CPS show up at your door randomly one day to interview you and your family. Horrifying experience ><

Sorry so long.. as I said in the previous post.. this stuff sticks around for a long long long time.