Must Have Items for the NICU

I was inspired to write this post by a thread on HelloBee listing your top 5 items for a newborn.  Many things are the same for a preemie in the NICU, but there are a few unique items that warrant their own list.

1. Boppy Pillow

I know that people are divided on whether they like their Boppy, but in the NICU, it's awesome!  I started working on feeding with Dylan when he was about 3 pounds.  I would fold a pillow double under him to get him higher.  It worked, but wasn't very easy.  The Boppy rests on the arms of the rocker/glider at the perfect height to allow Dylan to breastfeed or bottle feed.  It soft for me and for him...great for after feeding naps!

2. A Lovey

We got this one from Pottery Barn for Christmas-time.  (Dylan has 3.)  In the beginning, when baby is in the isolette, it's very comforting to see something that's not hospital gear.  I'm sure he didn't even notice, but it made me happy!

Here is Dylan with his: (at 4 weeks old, 29 weeks adjusted)

3. Clothes that Snap

NICU babies have lots of cords attached to them, so zippers just won't work.  Also, while babies are on Oxygen, over the head clothing requires a nurse's help.  So sleepers with snaps are the best.  Cute, cuddly, and hospital friendly.

4. Aden & Anais Swaddle Blankets

Hospital blankets are rough!  And not too pretty either.  I feel more like a normal mom when I'm holding Dylan with an A&A Swaddle Blanket.  They are so soft and cute!  The light, large fabric with a little bit of stretch is so much easier to swaddle with!

5. Soothies

I know people talk about nipple confusion with pacifiers, but in the NICU, these are physical therapy!  (And the hospital supplies them.)  Dylan has been given pacifiers long before he was allowed to try a bottle.  They help strengthen his suck reflex as well as calm him.  He gets a mixture of breast, bottle, and paci and does just fine.

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If you have a near-term baby or are going to be in the NICU awhile, your LO could use some developmental toys.

6. Mirror

I got this Fisher Price mirror yesterday at Target for $3.97!  It was a total clearance score.  Dylan's only had it for one day, but he loves it.  Babies love looking at faces.  As much time as I spend at the NICU, he's alone a lot too.  Most of the time he's sleeping, but if he's awake, I like that he has something fun to look at.  He also loves staring at a little stuffed monkey one of his nurses got him for Christmas. : )

7. Mobile

I haven't taken it in yet, but this is the mobile we got for Dylan.  Another thing for him to look at when he's awake.

8. Bathtub

Dylan gets baths a couple of times a week.  He used to fit in the little yellow hospital tub, but he's getting too big!  I keep forgetting to take his tub in, but when I do it will definitely make bath time more enjoyable!

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And here are a couple of preemie-specific items.

9. Bean Bag

http://www.reesedixon.com/2008/05/baby-beanbag.html

These are all home-made bean bags.  I was lucky to have one that was made by a nurse.  They are essential to keeping a micro preemie comfortable.  The bean bag is placed over the baby's lower body to help keep them in a good position (legs together, tucked) and to add some weight to keep them more comfortable.  The womb is much cozier!

10. Preemie Baby Book

There are so many things that make preemie moms feel alienated from the "regular" moms.  Baby books are just one small thing.  This book was written by NICU nurses and includes space for things like daily weight updates, the day baby graduated to an open crib...there's even a spot to paste the "sunglasses" baby wore under bili lights to prevent jaundice!  It's really cool and I love having it.

These items, along with a few personalized touches around the room, have really helped make the NICU feel more like home.  If you have any further hints for NICU moms, post below!

2012...Trauma and a Miracle.

I have never cared less about a New Year than this year.  We have no plans.  I barely even knew that New Year's Eve is actually tomorrow.  Mr. GG flies out for a business trip on New Year's Day.

Originally, I was planning to spend New Year's in the NICU.  But now it just doesn't seem like there is a point.  Baby should be asleep.  And sure I can tell him one day that we were with him at midnight...but does it really matter?  I will be awake since I usually pump at 11:30 but I'm just not that into it.

That being said, Mr. GG and I did come up with a last minute plan.  Sushi and wine.  Hot tub and smores by the fire pit.  And sex.  (I really hope my mom isn't still reading this blog.) We have not had sex since...hmm...well somewhere back when I was pregnant.  And before that was probably before we started IVF.  In April.  Our count for 2012 is probably somewhere around 10.  Maybe I underestimate.  We were trying to make a baby at the beginning of the year.  But since then...close to zilch.  Until tomorrow... ; )

Being in the NICU is getting harder and harder.  The first 3 months were fine.  I knew he needed to be there.  I wasn't supposed to have him until January.  But it's almost January.  And all of the people that were due around me are starting to have their babies.  And take them home.  I kind of felt like if we could take him home by his due date, that it was all okay.  Because all of this has been borrowed time.  But it's very likely that he won't be home by then.  I'm working on preparing myself so I don't totally freak out.

He just needs to eat.  But it's so hard!!  He eats 44 mls a sessions, but the most he's ever taken by bottle is 22 mls.  And that was just once.  Yesterday he took 17 twice.  Today 10 (but he was working on a big poop at the time).  Two days ago...2!  He seems so normal at this point.  His heart rate still drops occasionally, but in general he's doing so well.  He's over 5 pounds!  He seems so close to coming home...yet I have no idea when he'll start to get how to feed.

Anyway...2013 is going to be a whole different world.  2012 thoroughly sucked.  Besides the fact that I conceived and had Dylan.  That was great.  But every single thing surrounding it was traumatic and I will gladly put it behind me.  Here's to a new year!

And to those of you who are still in the trenches...I am rooting for you every day.  I was a little frustrated by the fact that during the Sandy Hook coverage everything focused on parents.  "Go home and hug your kids today" was all I saw on FB.  But you do not have to have a child to feel utterly devastated by what happened that day.  I've been thinking about this since then and wanted to all of you to know.

If you are still interested in following Dylan's blog and haven't been added yet, send me an email.  If you have put your email in a comment instead, I probably haven't added you.  Sorry!  It's much easier to reply with the link by email.

Here's a recent pic:

The Holidays are Hard : (

I wasn't sure how I'd feel about the holidays this year.  Mostly, I'm really excited.  I think not having work stress makes Christmas season much more fun.  I'm excited to put Dylan in his little "Gift for the Ladies" outfit.  I think the nurses will love it!  I think we'll have fun ringing in New Year's at the NICU with him.  We'll sneak in some Martinelli's and some glasses...

But today was not fun.  Thanksgiving is not something that you can bring to a hospital.  It feels wrong that all of my family was together, but not him.  It's not fair.

Mr. GG and I planned on going to the hospital on the way to my mom's, but because we wanted to take the dog and because there would be tons of food in the car, it couldn't work how we had planned.  I was already feeling a little sad that Dylan was missing out on family time, but this put me over the edge.  It's true, we still had 3 options; leave the dog at home, drive separate, or go see him after, but I still lost it.

I think Mr. GG was caught a little off-guard by the tears so he said "It's okay, we can fix this" thinking I was upset about not going to the hospital, but when he asked what's I wrong I just said that's it's because HE'S in the hospital.  It just felt all wrong and enhanced the isolation that I already feel for him when he's at the hospital alone.

I knew that I could not relax for a second today without going to see him first, so I drove the hospital (still crying) while he drove to my mom's with the food and the dog.

He was fast asleep looking super comfy when I got there : ).  They had even reduced his oxygen, upped his feedings, and eliminated one of his IV nutrient infusions.  Pretty cool.

As soon as I saw him, I instantly felt better.

Thanksgiving with my family was nice, but it'll be much, much better next year.

Way too Long...

You may think I've abandoned this blog but I haven't!  I'm still here...  I'm 6 weeks post partum this weekend.  It feels like a mix between forever and no time at all.

I know many of you are following Dylan's blog, but I just want to give a quick update for those of you that aren't.

After surgery on Halloween, things were kind of up and down.  Dylan was doing ok, but not great.  He's wasn't progressing in his breathing and it was very frustrating.  So the doctors decided he needed steroids.  They have some risks, but do wonders for the lungs.

They did not disappoint!  Within a week after steroids he was off the ventilator and onto a machine called a SiPAP.  Within a few days of SiPAP, he was trying just high flow Oxygen (like adults get), and now he's on the high flow over half the day!  Amazing progress.

He's also getting noticeably bigger and increasingly interactive.  He even got his first little mini head bath this week.  I'm getting to hold him twice a day, change his diapers, take his temp...fun stuff : )

Although this is still stressful and not what I had envisioned, I'm doing pretty well (most of the time) and I'm having a lot of fun getting to know my little guy.

If I don't post before then...Happy Thanksgiving!

PDA Ligation w/ Update

Dylan is having surgery this afternoon to close his PDA. It's supposed to be relatively simple, but it's still surgery.

I know all of the risks but also have faith thy it'll be fine. The surgeon is really good and I am confident that he will do a good job.

Please keep Dylan in your thoughts. I will update when things are calm, but please do not take a few days silence to mean that anything is wrong.

*UPDATE*

Everything went really well.  Hopefully now he'll be able to get off the vent soon.

I'm free!

Although I wish we could have made it longer in utero, now that baby is born, I'm so thrilled to be free of the walls of the hospital!!

I haven't been outside since September 21st!

It's going to be slightly harder to go see baby since I can't drive for a couple of weeks, but luckily, I have an extremely supportive family included a retired mom who will make sure I get to see him as often as possible.

But now if I want to take a nap (I'm exhausted), no one can walk in and interrupt me.  It's weird that even though I don't have baby with me, I'm still pumping every 3 hours including at night so it still affects my sleep.  I tried to nap in the hospital but it was impossible.

Now I'm on my own couch, with fresh air coming in through the open windows.

And then I'll go to the hospital with Mr. GG after dinner just like we do every other night.  Ideally we would go before and after dinner...we'll have to work out a routine.  Then I plan to go every morning also.

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Baby can breathe on his own which is great, but because of his age, he has apnea.  He either forgets to breathe or gets too tired to keep breathing.  So he's on a ventilator to make sure that he breathes, but he is breathing regular air - the same as the rest of us.

Baby has a Level 2 (out of 4) brain bleed.  This is extremely common and level 2 is not extremely worrisome.  They will recheck on Thursday and we hope it has not progressed.

He had a blood transfusion today which is also going to be pretty common.  Babies of his size have so little blood in their bodies and he can't keep up.

Otherwise, he's looking really good. His little fingers can squeeze my hand.  Sometimes he squeezes a tube between his toes (he got his dad's toes...looong toes) : ).  He also has his dad's ears and a full head of hair.

I feel happy when I see him, not sad because I think he's strong and can fight.  But I do get sad frequently when I'm by myself.  I'm sure some of it is hormones.  It's hard leaving a hospital without your baby.  But overall, I'm doing well, thanks in large part to the support of all of you (well 99% of you).

Just keep thinking those positive thoughts that baby will continue to thrive!