To Robbie

My dearest Robbie,

Today is your first birthday. It's gone by in a flash. I can barely believe that it was a full year ago that you joined the world, bringing with you more excitement and fear than I thought my heart could stand.

What an amazing year it has been. I won't lie to you, it started out rough. And there has been more than 1 bump in the road. But every moment has been amazing.

Your daddy and I struggled for a long time to have you. And then you came so early and scared us so much, so many times. I hope we convey to you just how much we love you and appreciate every moment with you.

We've learned so much in the last year. Some of it we wish we didn't need to know- medical terms and diagnosis and far too many doctor's names. But we've also learned how deep our love can go. We've learned how to set our own needs aside. We've learned how to make complete fools of ourselves just for a glimpse of your beautiful smile.

We've learned more about poop and pee than we ever could have imagine. And puke? Oh, the puke! We've learned that clean clothes are a luxury that we can really do without.

We've learned that so many things we thought were needs were wants, after all. We now know that all we really need is you and each other.

Thank you for the smiles, the laughs, the giggles. The err.. opportunity to see the sunrise a few extra times as we begged you to sleep. Thanks for the hair pulls and finger biting and pokes in the eye and nose.

Thank you for teaching us more than we've taught you.

Thank you for simply being you. And being ours.

I love you.

--Mom

And the winners are...

Just pulled our three winners using the random number generator!

The winner of the $25 Target gift card is Carrie M.
The winner of the $20 Cub Cash to Build-A-Bear is Kim S.
The winner of the donated necklace is Pam S.

I'll be in touch with all of you about getting you your winnings!

Thank you to EVERYONE who donated. You all have my love and appreciation.


--Trish

Robbie Paid it Forward

What a fantastic day this has been!

Truly, from the bottom of my heart, thank you so much to everyone who donated to this drive. You made today an amazing day and I thank you.

I'll be drawing names for the raffle tonight, so stay tuned!
...

David had informed that he didn't think he'd be able to get away from work to help me. I was disappointed, but understood.

A friend helped me sort through stuff during the day yesterday. She also helped me decorate nearly 6 dozen cupcakes to take with us.

Last night I put our custom made stickers on most everything and got it all boxed up. David loaded my car so all I would need to do is load Robbie and the cupcakes and go.

This morning I called my favorite chaplain from the hospital and told her we were coming to visit and bringing some donations. She offered to meet me at the door and bring a car. YAY!

So I loaded the car and away we went. We were close to the hospital when David called. He was able to get away from work after all, and was on his way!

We got to the hospital and Chaplain Laura was waiting. She helped unload the car and watched Robbie while I parked.

Then we trekked up to our old home-away-from-home.

We walked down the hallway that I walked a year ago today. I was transported back. I felt the fear and dread wash over me like it did that day. It was truly the most terrifying day of my life. I started to choke up a bit as we walked. I was afraid I was going to cry. We passed the counter where I checked in that day. I found myself looking in the faces working there wondering if they were the same ones from last year. It's such a blur that I'm not sure I'd even remember.

We finally passed it, and my anxiety eased. I reminded myself that I knew how the story turned out. Let go of the past.

Then we were at the NICU. Laura called for the volunteer coordinator to come down. A few nurses stopped out to say hello.

I took a box of cupcakes to the family waiting area across the hall. I felt a little shy because there were a lot of people there, but finally cleared my throat and told them that my son, Robbie, was a NICU graduate. He'd been born, I told them, a year ago Sunday and to celebrate, I'd brought some cupcakes. Then I set them down.

Right away, a new mom in a wheelchair started asking questions. Gestation when he was born? How big was he? How big is he now? I got Robbie out of the stroller and showed her.

She asked about his lungs. Another mother asked about his eyes. Her son has ROP.

David had arrived by then and he talked to some parents and helped show Robbie off a bit. By then, it was beginning to feel a little circus-like- but in a good way.

In the meantime, Laura had called for the hospital photographer to come take some pictures. (Much to my chagrin.) We posed for a few pictures. There's some talk of getting them into the next NICU newsletter.

Laura and Kathy (the volunteer coordinator) took the cart of boxes and the cupcakes down to the "new" NICU and we followed shortly thereafter. That's when the REAL fun began.

I didn't think we'd be able to go into the NICU because of germs, but they said we could come just inside the door and wait on a bench. So we did.

As we came through the door, they had started pulling stuff out of the boxes and spreading it out. They looked like kids at Christmas. It was so much fun!

More and more people started coming to see everything. I retold our story. They thanked me. I thanked them.

I cried, of course. I told everyone that without them, this year would have been the worst of our lives instead of the best. I thanked them for this year and everything they do.

There was lots of hugging and smiling and cooing over Robbie.

They decided to leave some of the items out on the counter for everyone to see, then took the box of bears around and started distributing them right away.

The clothes and blankets went to their donation closet.

Kathy was very pleased to see all the books. She said they'd just discussed starting a book drive so parents can read to their babies. Now it's started.

We saw lots of familiar faces. It was honestly just spectacular. Doctors, nurses, therapists, even one of my old lactation consultants came by (I got to brag that I'm still pumping.) to say hello.

Finally, it was time for Robbie to be fed. Laura took us down to Pastoral Services and found us a private place. Robbie was fed (and promptly puked on their pretty couch) and we visited a little while longer. Then we headed back home.

Tonight we'll draw for the raffle and tomorrow we'll get ready for Robbie's birthday on Sunday.

Thank you so much to everyone who participated. You made today a great one not just for us, but for the family and staff in the NICU. We are all truly blessed.


And of course- PICTURES!

many, many cupcakes



Yummy!


Scrapbooking/sign making supplies



Books!



blankets



Stuffed animals



burp cloths




accessories



more accessories and decor



Robbie is escorting all the goods.




Even the front seat is full.




Chaplain Laura tends all the precious cargo in front of the hospital.




The loot




Robbie's daytime primary, Dara, is in the center.



I wish I'd have worn some make up.



No one can resist Robbie!




David, Robbie & Laura







--Trish

Indebted

A year ago today a friend on a message board saved our lives.

I had started having "heartburn" and was feeling pretty rough. I hated to complain too much about it because I was just so grateful to be pregnant, that something as minor as heartburn seemed silly to complain about. But it REALLY hurt.

I made a post on the board about the heartburn and a friend, Danielle, encouraged me to take my blood pressure. I told her she was being silly. But she was not deterred. She'd had HELLP herself, you see.

At her urging, I bought a blood pressure cuff that night. Then I didn't believe the reading. But I promised if I still felt badly the next morning I would call. And I did.

When I left the house that morning, I had no idea I would be a different person when I returned to it 8 days later.

But if it hadn't been for the urging (Ahem- nagging.) of Danielle, I wouldn't have called. I probably would have had a stroke at home before I'd known something was wrong.

She very likely saved both my life and Robbie's.

Thank you, Danielle. I'm forever in your debt.


--Trish

Good Problem

It's a good problem to have when you run out of thank you notes to write for donations.

Thanks to everyone who has been sending stuff for the NICU. I'm truly, truly touched.

Two more days 'til donation day.

Four day 'til Robbie's birthday!


--Very busy Trish

Vent.

Man, I'm finding myself in a bitter, pissy mood tonight. Maybe it's PMS? I have no idea. My cycles are still really wonky, presumably because of the breastfeeding. (Or more correctly- the milk making.)

I think our PT set it off yesterday, though. She basically insinuated that I was making up that Robbie doesn't like tummy time. It's a long story, but when giving me my list of stuff to work on for the week, she said more tummy time (as always.) I sort of chuckled and said "Poor Robbie. He's not such a big fan of the tummy time." or something to that affect. She said that he had done just fine with it today.

I agreed but said it wasn't always so good.

She responded "Huh. I guess I've just hit the lottery all three times I've been here, then." in a kind of snide way.

Perhaps she missed the whole deformed-stomach-severe-reflux-two-stomach-surgeries-multiple-hospitalizations-ridiculous-number-of-evaluations-by-experts history in his chart?

Yeah. The kid just LOVES his stomach. I'm a total crackhead for thinking he doesn't.
Nevermind that he fussed and cried the last time she was here, so I don't know what she was talking about with the "all three times" bullshit.

Anyway, I took away from her comments that she thinks either I was saying I wouldn't do as she was requesting (which was NOT the case) or that she thinks that I'm not doing enough.

Now, number one, why in the hell would I fight tooth and nail to get PT started and then refuse her advice? I'd have to be pretty screwed up in the head to insist on PT and then refuse it.

Number two, every fucking thing we do around here is therapy! Sometimes I feel so bad for Robbie because he never gets to just play. All of this toys are developmental toys, and I must put him on his stomach (which, contrary to her assertion, he does NOT appreciate) 20 times a day.

Since he's rolling from belly to back so well, it's more challenging because I have to basically hold his hips down to keep him from immediately rolling off of it. Of course, he's still trying to roll over and now not only is he pissed because he's on his stomach but because the task he's trying to accomplish (rolling over) isn't working the way he knows it should.

So yeah, let me try to do a little more therapy with him. I'll see what I can do to fit it in between my mani/pedi, hair appointment and daily massage. As if.

Now, of course, I'm defensive because I feel like she's saying that he's behind because I'm a shitty parent. And as I have a good dose of mommy guilt (body failed him and all) already, I take that to heart. So cue even greater amounts of mommy guilt.

So you can trust that Robbie went to bed exhausted tonight. He probably got a week's worth of therapy today.

He might hate my guts and never gain any weight because he's burning it all off from exercise and grunting and groaning, but hey- anything to please the PT that we're paying for.

/vent.

---Trish

Random (w/pics.)

David's been out of town since early Saturday morning. He won't be home until tomorrow night. Man, am I ready for tomorrow night.

He's not a super chatty guy, but man the house is quiet without him. I miss him.

It's funny, really. I lived alone for nearly 10 years before we got married, but now that I'm used to having someone here, the house seems so empty without him. I mean, Robbie's adorable but not the greatest conversationalist.


...

The trouble with now being able to go out is running into weirdos in the world. Had a very annoying experience with a smelly, dirty, possibly drunk old guy in the grocery store tonight.

Essentially he had personal space issues and just couldn't accept that my son doesn't talk yet. He pushed the issue so much that I ended up explained that he was born 3 months early so while he was almost 1, he was really only 9 months and "NO. He doesn't talk yet!"

This lead to a very pregnant (I would shortly learn she's 8 1/2 months pregnant) woman nearby to ask about a million more questions which lead to her actually complaining about how she's miserable and "can't wait to have this baby."

Rule of thumb- if the woman you're talking to has just explained that her son was born 3 months early and spent those 3 months in the hospital, don't complain about being full term. I have no doubt she's uncomfortable, but I'd have loved to have been so uncomfortable. I simply replied "Yeah, I never go to that point. Good luck with your baby" and moved on as quickly as possible.


...

Can you believe he's almost 1? Holy shit. How did this happen? His birthday is less than 2 weeks away!


...

A reminder that any pay it forward donations are due a week from Thursday. (The 28th.) We've received several donations now and I'm having so much fun seeing the stuff and I'm so touched at everyone's generosity. I promise there will be plenty of pictures to reward you.


...

Speaking of pictures.



Did you need something, Mommy?

Hmm. What does THIS button do?



The latest in baby discipline. A playmat shackle.



Watching TV on Daddy's "mattress".



An afternoon nap on Mommy's "mattress."



Sitting up like a big boy!



I love my rattle.



Hangin' out at Grandpa's house.



Singin' and dancin' with my microphone.

--Trish

Reflecting on Mother's Day

Mother's day was very strange for me. Mostly in a good way.

The weekend was lovely. After the zoo & dinner on Saturday, Sunday was a relaxing day at home. David did all the housework including "my" chores, then grilled steaks for dinner. He gave me a card from him and a card from Robbie, both of which made me cry.

It was just the way a Sunday should be - relaxing with my family.

That being said, it was a odd, too. Everyone kept wishing me "happy first mother's day" and I was surprisingly uncomfortable. The world seems to have forgotten that I lost two babies before Robbie. While it was my first Mother's Day with a living child, it would have been my third.

I try not to dwell too much. If either of my previous pregnancies had worked out, there wouldn't be a Robbie. As I can't imagine my life without him, I tend to feel that my life is as it should be.

But that doesn't mean that I don't still think of, wonder about, and miss the babies that I lost.

I am also keenly aware that Mother's Day is salt in the wound of every infertile in the world. Every time a stranger wished me a happy Mother's Day, I found myself looking around for a pained expression around me. For too long, I was the owner of that grimace.

To me, Mother's Day is a bit redundant. Every day feels like Mother's Day to me. Having Robbie in my life is a new gift every day. But when you're still yearning to be a mother either for the first time, or for a child that has been lost, this public declaration of appreciation feels like a sharpened blade in the heart. To me, it always felt like the world was purposely out to hurt me.

I hate that those who haven't been as blessed as I am were hurting.

Lastly- and this one took me most by surprise- it made me think of my own mother.

For those who don't know, my mother left me when I was 2. The story is long and sordid, but the short version is that I was raised by my father. My paternal grandmother was the primary maternal figure in my life but our relationship is... strained, let's say.

She did call once when I was about 27. Turns out she's slightly crazy. Not crazy in the way that way where you need to get her some help. Crazy in that way that makes you want to hit things and pull your hair out. Our renewed relationship lasted less than a month, dwindled to annoying email forwards for another 6 months and has once again been non-existent for several years.

As a young girl, it hurt not to have a mother. I wondered what I had done to make her abandon me. What could I do to make her love me?

Sometime in my early teens, the feelings of inadequacy dwindled and I accepted life for what it was - atypical, but not so bad.

I think having some friends whose absent parent flitted in and out of their life made me appreciate the stability I had. I never waited for a phone call or visit that wasn't coming. She just wasn't there.

As an adult, I mostly didn't think about it. Not that I was trying not to, but I just had other things on my mind. Sometimes I'd wonder about her- my birthday sometimes left me wondering if she even remembered. But by the time I was cutting my cake, the curiosity had passed.

But this is the first Mother's Day where I know the joy of looking in my newborn child's eyes. Even in the chaos of Robbie's complicated birth, the first words I spoke to him were "I love you." In a moment, my heart was no longer my own.

It would be 5 days before I could hold him, but now, thinking of that day, I still well up with tears of joy. It was a moment of true happiness like no other. He weighed less than a pound and a half but my love for him weighed a ton. He took my breath away.

Here I am, nearly a year later, a frumpy stay-at-home mom. I've lived in isolation for months on end. There are days when it's all I can do to wait for David to get home so I can have an hour of "freedom". An hour at the grocery store seems like a tropical vacation after days on end of puking and crying and poopy diapers and one-sided conversations mostly sung in a saccharine voice.

But I get to the grocery store and before I can make it out of the produce section, I'm already missing him. I have to fight the urge to call home to see if he's okay. Does he miss me even an iota as much as I already miss him?

I don't think my mother is an evil, uncaring person. So I know she must have wondered about me. She must have missed me. I can't imagine living my life knowing that my child was out there, somewhere, without me. As much as, as a child, I wondered why she left me, I suddenly wondered HOW she could have left me. Not for me, but for herself.

Mother's Day must have been painful for her. Her own doing? Yes. But painful nonetheless.

This was not the first Mother's Day I was sad. But it was the first Mother's Day that I was sad for my mother.

Fortunately, all of the sadness was vastly outweighed by the true feelings of contentment and happiness that Robbie brings me every day.




--Trish

Family Outing

Someone should have warned me how exhausting it is to leave the house with a small child!

Now that are restrictions are semi lifted, we took the opportunity to get out. I'm not sure the zoo qualified as "no large crowds" but since it's open air and doesn't require touching a lot of common areas, we thought it would be safe, so Robbie had his first trip to the zoo.

He didn't seem to feel too strongly about it either way. He wasn't terribly excited, but also didn't get fussy or restless at all. He doesn't really understand pointing at things yet, so I don't think he knew what he was looking at most of the time.



Less than impressed by the lemurs.



He did seem to enjoy petting the goats, so at least there was that.





He didn't seem terribly impressed by the butterfly house, either.



I think his favorite part of the visit might have been when Mommy & Daddy had refreshments.

I may not like MY bottle, but mommy's is tasty!



Either way, mommy and daddy had a good time. It was our first family outing. (Hospital visits do NOT count.)


After the zoo, we came back home for a feeding/puking session. (His reflux is still awful.) David and I got changed and headed out to a nice dinner for Mother's Day.


We went to a local Italian place- Mungo's. Robbie did great. He flirted with the patrons waiting next to us and was pretty perky throughout most of the dinner.


He had his first taste of big people bread and boy was it a hit!






He started to get a little restless towards the end of dinner, but was pacified by the joy of playing with my to-go bag.


Bread is good, but paper is better!




All in all it was a great day. It was exhausting, though. Robbie fell asleep in the car on the way home and I could have easily done the same.

But it truly felt great to get out of the house and seem almost normal. It was the greatest Mother's Day gift I could have asked for.

--Trish

P.S. One more bonus picture. Robbie had his first trip to the grocery store with me the other day. I brought toys, but in typical child fashion, the best "toys" are always mom's.

New Toy

The sitting up continues to improve every single day.

We got a new toy that a few friends recommended and man he LOVES the thing. He sat up for a good 7 or 8 minutes in a row tonight. The only thing supporting him was his hand on the toy and that wasn't constant.

It has some flashing lights at the top and he was riveted. Definitely 2 thumbs up from me.





--Trish

all's well

The laptop seems to have recovered from its temper tantrum. That strange sound you just heard was me breathing a sigh of relief.

Today was a very trying day. It started at 7am when Robbie was fussing in an usual way and I discovered that his feeding pump had come loose at some point in the night and I'd been "feeding the bed" for a while. He was hungry. And his bed was soaked.

Then there was the breast milk dumping incident, which initially annoyed me because it was yet another waste of breast milk, but then turned into panic when the laptop died.

Robbie was also quite clingy today. Now, I secretly enjoy those days a bit, but today the timing just didn't seem to work out. The pump session that ended with the dumping had actually been interrupted 3 times to console/entertain/change him. I probably should have taken that as a sign to give up.

BUT. It wasn't all bad.

As I mentioned- we're off quarantine! Sort of.

We celebrated tonight by taking a trip to the book store. Robbie came with me and was perfect. He was probably secretly plotting how to eat all the books since paper is his favorite chew toy.

One stranger did try to touch him. (Please, for the Love of God, DON'T TOUCH PEOPLE YOU DON'T KNOW.) I managed to duck and twist to keep her hand off his head. We even got through the whole trip w/o anyone asking how old he was. That means I avoided the inevitable shocked gasp and subsequent explanation.

I got some new books and even took Robbie's picture in the mystery section. I waited for someone to ask me why I was taking such a boring photo, but they didn't.

In other good news, Robbie semi-sorta-partially-kind-of rolled over from back to belly tonight. I had a toy up at the right side of his head and he rolled over to reach for it with his left hand. He sort of thunked down so he was laying completely on his right arm, grabbed the toy and rolled back. I'm not sure that "counts" but in my book it shows he CAN do it, he just doesn't want to.

Add that to the fact that he sat unassisted for about a minute and a half tonight and really it was a good day in Robbie gross-motor-land.

In the last week he's also started doing something that I am loving. He reaches for me (or David) to pick him up when he wants up. That might seem like a minor thing, but man it's just so sweet when he's hollering and you go over to ask what the problem is and he reaches for you and looks happy. Totally melts my heart.

He's also getting better at holding two toys at once. He could *sort of* do it before, but it was pretty rare and short lived. He's still not banging them together or anything, but given two toys that he loves (his favorite "toys" being the tube of Aquaphor and a tube of Butt Paste) he'll choose to hold both for a few seconds.

He should be starting PT any time. Depending on the paperwork, he might have his first session this week but definitely by next week.

At our IFSP meeting last week, we were discussing his 6 month goals. Mine were: sitting, crawling, walking. The PTs included all of those AND stair climbing, running and a few other things.

It blows my mind to think he could be climbing stairs in 6 months. I think it's one of those things I'll believe when I'll see. But he really is making a lot of progress the last month or so, so who knows.

In eating news, it's a mixed bag. He's completely given up on the bottle. For a while he'd at least drink a little at night but now he wants nothing to do with a bottle at all. It all goes in the tube.

However, he's made some improvements with solids. He's not eating enough to rely on, but he's actually been opening his mouth and smiling during feedings. That's HUGE. It's so amazing to not having crying, writhing & fighting when he sees food. Hopefully it means good things in the future even if overall they kind of suck right now.

In one last positive milestone, he finally broke 12 pounds over the weekend. His weigh in tonight was 12 lb 1.5oz. There was a point I wasn't sure he'd hit this weight by his birthday. At this rate, I think we'll actually hit 13+ pounds by the time he's 1. Still tiny, but headed in the right direction.

All in all, I think the day ended up in the positive. All's well that ends well, yes?


--Trish

Good news & Bad news

The good:

I spoke to our pediatrician today (well, one of her partners who relayed the message from her) and we're semi-unquarantined.
We are now allowed to venture out. We should avoid large crowds and anyone with a cough. Try to keep his carseat covered when we're out and encourage hand washing practices.
Basically we need to stay germ-phobic, but we're paroled!

YAY!

The bad:
Pretty sure I fried my laptop this morning.
I managed to dump about 2oz of breast milk into it. I literally had to pour the milk out of the keyboard.
It currently won't power on. I'm praying that when it dries out it'll work again, but if not, we're screwed.
I'm using the hubby's desktop for the time being, but computer sharing doesn't work well in our house. And being tied to the office doesn't work well with a small child.

If you could think good electrical thoughts for us, I'd appreciate it.

In the mean time, updates may be sparse. And pictures non existent since I don't even know how to upload pics from my camera to the husband's computer. I always use the memory card reader on the laptop.

--Trish

Sitting Up

Robbie is getting better and better at sitting. He still needs to catch himself fairly frequently but is definitely close to sitting unassisted. He can look around (and up) w/o immediately falling over now.

He is cheating a little at the end, but he'd been sitting w/o leaning for a couple of minutes before I turned the camera on, so I think he can get away with it.

Please excuse my obnoxious narration.



--Trish