How to remember the good times that happened in the NICU? (Long stay)

[alusuw]

Hi All-

I posted before I had my baby (B) and everyone was so helpful with questions for the neonatology team!

B, our little guy was born at 27/5 with IUGR. Today makes 4 weeks in the NICU, the first 3 weeks were a blur and I don’t remember them at all (I think just trauma brain). Now that I’m thinking more clearly we want to remember the good things that are happening with B. Since we can’t be there all the time I was going to make a little note station in his room if the staff wanted to write a message or something good that happened that day, words of encouragement, etc - so we can go back and look at them.

Has anyone done something like this before? Or what have you done that has worked?

We’re looking at a long NICU stay due to his size (born at 1 lb 4 oz) and don’t want to miss all the good things! Clearly, we are not requiring anyone to write any of these notes but think it may be fun if someone of the staff did.

L

 

[beautifulblizzard]

@alusuw We had a really great primary nurse. For every single milestone (each lb gained, each month older, each holiday, and other achievements like getting off of oxygen), she would take my son’s foot or handprint, make a little card out of construction paper and laminate it to commemorate the moment, since depending on the day or situation we may have not quite been in the mood to celebrate. My son was born at 23 weeks and spent 159 days in the NICU, so we have a lot of these, probably around 30 and they are now used to decorate my now almost 2 year olds room.

 

[dansonpete]

@alusuw We were given a journal at the beginning of his stay and kept up with the whole time. We mostly just noted what happened, who the doctors and nurses were, and little milestones like “first bath”, “first hold” etc.

The journal was for 50 days and over our stay we went through 5 of them. We’ve got a little collection.

If they allow phones, take lots of pictures.

 

[woodrowcall]

@alusuw Our nurses wrote positive little wins on his whiteboard every few days. It was standard NICU practice for our hospital. I don’t think it’s unreasonable to ask them to write down a mini milestone for you once in a while.

I took lots of positive pictures during our 8 week stay. First time seeing him cpap free, first little smile, first time holding my finger, first time breastfeeding, etc. and made a special NICU memory book on Shutterfly. You could add some of the milestones to the book.

 

[ansonthms]

@alusuw I would take a little journal you, and write down things yourself. keep note of the names of the nurses who were kindest, nice little moments that happened etc and date each one. My thought is that the nurses may feel a bit awkward writing little notes etc, but they will likely happily give you a rundown if you call in the morning to ask how the night went, or ask them how things are going when you arrive etc.

 

[sirsteve]

@alusuw We have a NICU journal that was in his room for the entire stay. The nurses wrote lots of entries in there and even added pictures. If he wants to understand what happened later we can just give him the journal!

 

[plans4good]

@alusuw I started a journal, but found I couldn't keep it up due to being exhausted.

I'd seen the movie Chef and had the 1 Second a Day app on my phone (that will make sense if you've seen the film haha), so started doing that and captured something not quite every day, but most days. I didn't necessarily stick to just happy stuff, but I came out with something that I think shows how far he came (I kept it up right up to his third birthday) and reminds me what we all went through.

If you wanted to check it out, it's here:

 

[laynson]

@alusuw When my little was born at 32 weeks, I had a lot of time in the hospital due to pre and post eclampsia. One of the first things I did was set up a new email account for her to write down all the thoughts and ideas I had, how her day was in the NICU and share some pictures. I won’t give her the email until she’s 18 or so but me and my husband have been sending her little notes, accomplishments, milestones etc. for the last 6 years. It’s become our sort of “live baby book”. It helped me remember the good times and memorialize her firsts and I think she’ll love it when she can read and look at as a teenager. Best of luck!!

 

[fredindallas]

@alusuw Get a journal and write down something every day. Might not be much some days. I'm not sure our nurses would have been on board with your suggestion.

 

[alexclarke236]

@alusuw My wife had a great book with questions and prompts that was supposed to be packed into her hospital bag. Funny story, that hospital bag wasn't packed 10 weeks ahead of time when our little guy was born. It never made it, and never got filled out.

Luckily, our NICU filled out caterpillars for each week/milestone. It's a fun, cute way to look back at what in reality a pretty unfun experience.

 

[shonspawnel]

@alusuw Our NICU made milestone cards for us for growth, firsts, wins. If they don’t, make them for a box or scrapbook!

Pick a stuffed animal (jelly cat or cuddle kind are great) and do weekly photos to show growth. Get your hands on the small first diaper and every size after to see the growth as baby’s first birthday. If you can, bring in a couple of personal items to decorate the space to make it more welcoming. I had a 27 weeker with my first baby!

 

[aubreyrose]

@alusuw We did a photo a day, actually two photos, one of baby and one of his chart. After we came home, I printed up a book with all of his photos. We also have the milestone scrapbook pages the nurses made for us and a keepsake box for a of his tiny things.

 

[mmbministries]

@alusuw I had bought a pre-set baby book for my son before he was born that has all kind of great prompts in it, but it has a bunch of blank pages at the back. I chose to make that his NICU page and put our own milestones in there. "First time we held you!" "First time you got your EEG hat removed!" "Feeding tube out!"

It acknowledges what happened without leaning so hard on the bad stuff. It might help to make a folder on your phone for the good stuff!

 

[alusuw]

Just an update - we were gifted a preemie baby book that we do fill out with what the staff calls to tell us on rounds and his weight.

I did leave a Note with cards and pens in his room! We didn’t talk to any of the nurses about it, just left it and if they had time to read it and wanted to participate they could. We’ve been having a nurse leave a note everyday - either a day/evening or night shift nurse. It’s been a fun surprise for us to read and keep in a book for later. Lots of the kites are things that they wouldn’t call us about - a lot of funny poo stories and other updates!

I would say depending on how your nicu unit it - it’s a cute way to have the nurses involved if they want to be!