10 weeks in--I've hit my wall.

kelligagnon

This is my first post on this site. I am a preemie mom and my LO has been in the NICU for 10 weeks and 3 days....and counting. She was born at 27 weeks with severe IUGR and weighed 1 lb 2 ounces. So far the experience has been better than I expected in terms of what could have gone wrong, but I am starting to hit my wall. The closer we get to going home, the harder ever set back feels.

Any advice on how to get through these days where we are getting closer to going home but yet it still feels SO far off?

SushiNoMore

Huge hugs!  I've been there.  When you have a micropreemie, the first days or weeks are the hardest when you aren't even sure your baby is going to make it.  The middle is just kind of treading water - you're just existing day-to-day.  Then, the end is SO HARD. Our son had a couple of setbacks towards the end, so I know how you feel on that.  I wish I had some great words of wisdom for you, but I don't.  Just try to hang in there!

adrielegorburu

First off let me say congratulations! My miracle was born at 22w5d weighing 1lb 4 oz - we were in the NICU for 117 days. I agree with Sushi - the begining was the hardest, the middle was day to day and the end was so bad! I felt like we would never go home - but you will and that will be a very happy day. For all the complaining I did when they did say we were going home I felt very unprepared!.  Have you gotten LOs room ready? the house ready? it was a good way for me to pass the time.  Also if you plan on doing any scrapbooking or memorabilia from your NICU stay now would be a good time to start. I wanted to make a picture scrap book and I havent had any time to do it now that baby is home.  GL

kelligagnon

Congratulations on your adorable micropreemie miracle. Isn't amazing how much fight and strength such little beings can have.

I wish I had time to put a scrapbook together because it is something I really want to do, but I am working full time, so I can have 12 weeks of leave when she gets out, so what little time I have when not working or at the hospital I spend trying to get things ready. I decided yesterday I have no idea what being ready actually means because I have no idea what I still need.  I know for sure I'll feel totally unprepared when they tell us it is time to take her home!

I thought going back to work would make the time go by faster, but I've been back for 4 weeks now and it feels like time has stopped. I agree with both of you that compared to the beginning and the middle, this is by far the hardest part of the experience.  Ugh.

AlwaysSunny925

kelligagnon:

Congratulations on your adorable micropreemie miracle. Isn't amazing how much fight and strength such little beings can have.

I wish I had time to put a scrapbook together because it is something I really want to do, but I am working full time, so I can have 12 weeks of leave when she gets out, so what little time I have when not working or at the hospital I spend trying to get things ready. I decided yesterday I have no idea what being ready actually means because I have no idea what I still need.  I know for sure I'll feel totally unprepared when they tell us it is time to take her home!

I thought going back to work would make the time go by faster, but I've been back for 4 weeks now and it feels like time has stopped. I agree with both of you that compared to the beginning and the middle, this is by far the hardest part of the experience.  Ugh.

I am working full time too so that I can have time off when my boys come home.  It's so hard because between work and the hospital it is hard to find time to prepare.  Also, I am getting nervous because I have to find a temp for my position while I am gone and I have no clue when that will be...it's just a guessing game at this point. 

I guess what I'm trying to say it that I feel so unprepared too!  Yikes!

kelligagnon

Yikes indeed! I can't imagine any extra added stress like having to find someone to temp my position while I'm on leave.  I can't even make a decision on what kind of bottles to buy because even that stresses me out

Right now my only comfort is knowing that 'if' she just suddenly decides she is ready to come home I have the necessities: a carseat, a crib, diapers and milk supply to last awhile.

urbanflowerpot

kelligagnon:

Congratulations on your adorable micropreemie miracle. Isn't amazing how much fight and strength such little beings can have.

I wish I had time to put a scrapbook together because it is something I really want to do, but I am working full time, so I can have 12 weeks of leave when she gets out, so what little time I have when not working or at the hospital I spend trying to get things ready. I decided yesterday I have no idea what being ready actually means because I have no idea what I still need.  I know for sure I'll feel totally unprepared when they tell us it is time to take her home!

I thought going back to work would make the time go by faster, but I've been back for 4 weeks now and it feels like time has stopped. I agree with both of you that compared to the beginning and the middle, this is by far the hardest part of the experience.  Ugh.

Hi and welcome I'm glad you started to post

The end of the stay is the longest. I remember when I hit my wall...it was bad. I didn't want to talk to anyone. I just wanted to sit and hold my baby and crochet. We'd run out of small talk and I was just...done. In a way it's really good that you have work, though I had to rebuild my home while DS was in NICU so having a "job" - whatever it is can just make you feel more frayed at the edges.

You won't need to worry about bottles - worry about them later. Chances are you'll use NICU's bottles for a while/always.

Take some time for yourself - go to dinner with DH - something, anything. I know you want to spend every minute bedside but making some time to "relax" will be helpful because it's stressful when they come home. You're used to asking the nurses about everything - it's intimidating.

I wish I'd bought a RNP before LO came home. I got one eventually, but straight away would have been better.

Put the keepsakes in a box...you'll get to them eventually. You might find that they're hard to deal with once LO is home. There is another stage for most women once they get out. It seems like the different stages just continue.

Make sure you're taking lots of pictures and using a prop for size reference - I never thought of that while in there.

That's all I can think of

Chitown chic

First off, congratulations on your beautiful bundle. She is adorable, and it sounds like she's doing so well (I was just reading your blog). My now 7-monther (adj 4 months) was also born at 27 weeks with severe IUGR. She weighed 1 lb, 6 oz and ended up staying in the NICU for 120 days. I distinctly remember getting close to her original due date and time just STOOD STILL! The only thing that helped me get through the end was continuing to tell myself to take things one day at a time. As soon as I found myself trying to plan ahead/get excited about her homecoming, I found that every little setback seemed like such a big deal.

I also found that taking a night off every once in a great while really helped me get some sanity back. Even if it was just to go to bed early one night, it always helped give me a little perspective on how far we'd come. Plus, she WILL be home soon, and once she is, you won't be able to take time for yourself as easily. I'll definitely be keeping you, your DH and little girl in my T&Ps! Please keep us updated on her progress!

urbanflowerpot

Yeah, so I saw you have cans next to your baby - clearly you've thought of that! See?? even more sleep deprived than before!

kelkel09

First off, love your DD's name...Avery is my DD's name too

It is definitely hard being in the NICU that long. My DD came home after 10 wks, but now at 17 wks my son is still there and not even close to coming home. As much as I am over being in the NICU at this point, my son recently had a major event where we didn't even know if he would live. Now, I am just thankful he is here with us even if that means he is in the NICU a lot longer. Just try to stay positive and know that your DD will come home soon enough and as long as she is healthy that is all that matters!! T&Ps!!

JeepersWife

Congrats on Avery! You have certainly come to a great place full of supportive women! I had a very hard time at the end too...I knew it was so close and I would let myself get excited but then another day would come and go...after DS came home though, all of my emotion and "keeping it together" got released...I felt so guilty and helpless..I would suggest making sure you have a good support system in place before your DS gets home. My DH and mom and sis were there for me to just breakdown...and after a couple of weeks I was good and able to enjoy my little guy. As far as supplies...DS slept in his boppy (bounce) chair almost every night due to reflux, we also got the boppy wedge to use at his changing table and in the bassinet...I wish I had a moby wrap in the beginning (got it later and LOVE it). Oh...swaddles! DS is still comforted by one! He would just cry until swaddled! I hope the rest of your time in the NICU flies by!

JeepersWife

My edit didn't work...I meant your DD and swaddlers!

MrsRumpf

Lady I feel your pain.  We just wrapped up 94 days (13 weeks 2 days, I think?) yesterday.

It became crazy--especially when I was driving back and forth 30 minutes each way with one son to see the other in the NICU for a month.

My advice is to find the nurse you like the best and try to get her with your kiddo as much as possible.  Also take photos, write in a journal, bring clothes for them, and try to get as much done at home as possible.

Good luck to you.  I know it feels like forever, but all of a sudden they will be telling you to take that kid and go!