Losing it in the NICU

saratine · June 2012

I wrote this today while waiting for our babies next awake time at 11:

https://moonstruckmaybe.blogspot.com/2012/06/nicu-is-finally-making-me-feel-crazy.html

Does anyone else feel this bitter and NUTS? I seriously feel like I am going crazy. Any advice for NICU parents feeling like this? Maybe this is just a bad day, but I feel like this is never going to be over, and I'm so afraid of not having enough time with him before I have to go back to work. He's started his bottle feeding, and isn't doing well at all. He has a good suck, and his breathing is ok during feeding, but his stamina is crap. He gets so tired so fast. He'll be 36 weeks on Tuesday, when should we expect him to start taking off with the bottle? The nurses just keep telling us "it all depends on the baby" and I'm ready to tear my hair out.

Missa_g · June 2012

Being a NICU mom is seriously the hardest thing I have ever been through in my life. Our boys came home at 38w2d gestational age, 2 months exactly of life. Tomorrow they will have been home for 3 weeks! I know how frustrating the feeding is, if you look back on this board I asked a bunch of questions at about the point you are and I wrote about it in our blog. 37w was the beginning turning point for us. We also switched to the nuk nipple at that point and it made a world of difference. What you're feeling is 100% normal and okay. You are doing a fantastic job!

DrRx · June 2012

Being a NICU mom is the hardest thing that I've ever done in my life. My daughter was born at 26w2d and she spent 83 days in the NICU. I totally understand about the "Groundhog Day" feeling--I felt that a lot. I didn't get to hold my daughter for a little over 3 weeks, but when I did it was so incredibly powerful. It was hard for me at the time to see big pregnant ladies, but for me it has gotten a lot easier. I'm actually going to a baby shower today and feel about 95% ok about it.

Have you done Kangaroo care? Basically, you have the baby lay on your chest, with a blanket over them, and not touch or talk to them. I would do this in between her Hands On times (that's what they called them in my NICU), sometimes for an hour, sometimes for 2. I would play Words with Friends on my phone, or watch TV (we had TVs in the rooms), but it was really helpful. It helped with my milk supply and helped me bond with her. It didn't overstimulate her since she was just lying on me sleeping.

I understand about it being hard seeing people leave the hospital with their baby. At my hospital, the day that we were discharged, I got wheeled out in the wheelchair holding my baby. I got to have the same "new mommy walk" that all the mom's who had term babies did. I can't tell you how emotional and wonderful it was to see people smile at your baby.

And while there will be things that will be different about your baby as far as development, he will probably be caught up by the time he is 1 or 2. Be sure to get him in Early Intervention to help with any physical or developmental delays.

One thing that being a NICU mom has taught me is patience. Things will happen when they happen. The NICU is a marathon, not a sprint. ((hugs))

urbanflowerpot · June 2012

We call it 'hitting a wall.' There might be more than one wall, though, because sometimes you're forced to get a second wind. I hit my first wall about a month in - then about a week before discharge. The days leading up to the end are the absolute longest, so maybe prepare yourself for that. I had to readmit him after he'd been home a few weeks (only 8 days that time) but I've never been so bitter and depressed in my life (it was 50 days in the first NICU).

It does take time and every baby is different...DS was a bradying fool. He came home on a monitor for four months so that = 6 mo of bradys! Nobody told me that it could take -that- long you know?

Can you tell I'm still bitter, too? It does get easier but it takes time. When they come home it's the best, but NICU doesn't mean they're 'all better' - that annoyed me. People thought that just because he went home he should be acting like a FT baby.

::hugs:: I'm sorry. Sorry I'm lousy, but I don't want to be another 'he'll get it any day now!' 'he just needs to get bigger!' cheerleader. I was so sick of hearing that by the point you're at.

kdp2008 · June 2012

I am so sorry that you are feeling this way but know that there are lots of us who are also going NICU crazy as well.

Our baby has been here since June 13th and we have made the decision to have a little "home time" each moring and evening. It's hard but for sanity's sake it has it's benefits and makes us feel a little more normal.

I am new to the board no new to NICU life since we were here almost a year ago as well.

Please take care of yourself and post as often as you need to for support!

2Momtoo · June 2012

It can be so frustrating...something that helped us was switching from a slow flow nipple to a regular one. Also we asked to go ad lib feeding instead of every 3 hours no matter what. Another thing is sometimes the nurses get busy with their other babies so at some point you might just want to camp out.

On another note, it does get better, I just kept telling myself a year from now everything will be better, and it is!

Denesdia · June 2012

Mama, you said it perfectly. Copy and paste this entry on every NICU mama's blog from here to eternity because you are on the money. I agree with pp's in that you may have other "walls" you will hit later, especially in the home stretch of going home. I remember that after Zoey's third surgery (which we HAD to have so she could come home) somebody had a great idea to let me see her without her having had pain medication right after the procedure. I remember screaming and crying hysterically at a clerical person on the ward who had nothing to do with it. I was saying, "Why would let me back here with her like this?" Granted, I had been there for about 80 days at that point, but still. My point it is, we validate you. Embrace the wall, and then climb over it. Your baby's work at the NICU is not done, yet.

katie4253 · June 2012

You are normal. I wrote about "groundhog day" when we were in the NICU too. It is hard, the only thing I can tell you is it gets easier once they are home (for a while) and now that we are approaching 1 year adjusted, I feel more like I am just another mom and don't think about his preemieness quite as much.

katie4253 · June 2012

Oh, and the last part of the nicu stay imo was harder than the first part. By the end, when he was SO CLOSE to coming home, but couldn't....I was a mess. It is the sprint after the marathon and it sucks.

adrielegorburu · June 2012

We were in the NICU 117 days - so we hit that "wall" more than once - there was one day I just sat there and cried - The whole day - until the nurses sent me home. I remember thinking she would never eat from a bottle - that we were supposed to be going home soon and she couldnt make it through an oz.... but one day she did... and then a few days later it was 1 1/2oz. Being a NICU parent is a struggle - and it tought me so much patience. I tried not to think of any "going home date" - I just tried to think of how many good days we had in a row - once I lost count I knew we were getting close.... good luck

haziedaze · June 2012

I think I had every single emotion you wrote about- I think most NICU moms do and you described them all very eloquently! I'm so sorry you're going through this and sending T&P for peace, strength and as short a stay as possible! ((HUGS))

JuliaJAG · June 2012

Oh hon, I can relate to every single thing you wrote! Only I'm on the other side of it... our 9-week NICU stay is a closed chapter now and even though it feels eternal right now, it really will come to an end and all the wonderfulness of having your sweet baby at home with you will begin.

"Hitting the wall" is a great way to describe it. I hit it about 36-37 weeks too. I had had high hopes of Jack being discharged soon, but his bottle feedings just fell apart and I felt a hopeless, overwhelmed feeling that he could be there for months more. One really bad day (the kind of day it sounds like you've had), I burst into tears in Jack's room in the NICU, three or four different times. I hadn't cried in the NICU since the first or second week! It was just wearing on me.

Please keep your chin up though... everyone kept telling me that once he "got" it, things would happen quickly. And they were right. In our case, it took a powwow with one of his neo's, his nurse that day, the nutritionist, speech therapist, and lactation... we came up with a feeding plan that all nurses had to stick to. Almost as soon as that was implemented, Jack's feeding stamina really took off and he was having his car seat test within a couple of days. It really made a difference to have a plan in place instead of each nurse doing whatever she felt like.

Don't be shy about being proactive and insisting on a feeding plan or at least some goals and a timeframe to shoot for. Obviously no plan comes to fruition perfectly, but at least that way, everyone is working off the same page and you have some kind of timeframe goal.

Hang in there... it WILL get better!! (((hugs)))

Mommy2CB · June 2012

The NICU is so hard

I'm sorry you have to deal with this but remember your DS is receiving the best care and before you know it he will be out of there and this will all be a memory. Our son is turning 1 next week I cannot believe how fast the year went by.. those first 3 weeks in NICU are long gone!

MrsPookaLuv · July 2012

I am full fledged doing the ugly cry right now! Your blog post is everything I'm feeling! I often describe this experience as Groundhog Day- don't bother to ask me what day it is, because I don't know. My nicu experience is hopefully ending in the morning, but I've been through this before and don't want to get my hopes up too high tonight.

The best piece of advice one of the nicu nurses gave me is that we had some of the highest paid babysitters watching over our dd right now and we should utilize that time to make sure that we take care of ourselves and each other. And we did. It got easier once dd was taking full bottles though because then I knew that she was being held and coddled every 3 hours. And especially when our primary nurse was working- I knew that she cherished time with my daughter as well, so I would "forfeit" a feeding session so that the nurse could have some time with dd too. It allowed me to go home and get some extra rest or just spend time hanging out in her room. Having dinner earlier than 9 pm! lol

Another piece of advice we got about bottle feeding from a nurse was that it would happen overnight- and it did. I litterally came in one morning and was told that dd had taken all of her feedings by bottle overnight, which meant that she had full bottles for the past 24 hours! Your baby will get there, in time, in his own time.

I hope that your time in the nicu ends soon.

MrsPookaLuv · July 2012

Clearly I should've noticed the date! lol

read further on your blog to see that you're already home! congratulations!

Losing it in the NICU

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