Thursday, April 30, 2009
Monday, April 27, 2009
Posted by David, Trish and Robbie Cox at 10:53 PM
Friday, April 24, 2009
Tuesday, April 21, 2009
So there is a little boy out in blogland who had surgery today. His name Stellan and in support of him, his momma asked that everyone wear orange today to support him.
Well, Robbie is nothing if not supportive, so he wore his favorite spring outfit which just so happens to contain a lot of orange.
As his mom, it was my job to document the event. Sounds simple enough, right?
Well, this is how it went.
I thought Hmm, this should be simple. I'll just make a sign and take a picture.
Hmm, well, that's not bad, but maybe I could get a better look on his face and the sign could be straight.
I'll just put the sign over here.. Hey Robbie.. Robbie..Look over here, baby...
Hmm.. Maybe if I put the sign on the other side.. oh crap.. Robbie, honey, let go..
Okay, maybe I'LL hold the sign up.. Well, crud. Robbie, baby.. don't cry. This is supposed to be fun.
Well, that's better, but the sign has seen better days.. and well, you can't see Robbie's orange outfit, which was the whole point.. What next?
Okay, let's put the sign off to the side a little.. Yes, baby, I'm glad you like the paper..
Okay, I give up.
At least Robbie's amused.
I wonder how many calories paper and ink has?
In the end, we sent Stellan the original.
Get well soon, Stellan!
Posted by David, Trish and Robbie Cox at 5:00 PM
Monday, April 20, 2009
Wow, first off- thank you so much to those of you who have already contacted us about donations for Robbie's Birthday Pay-It-Forward. We're truly touched.
On top of the many individuals who have contacted us, a few friends with "connections" have offered donations as well.
A dear friend who runs Save The Date Originals is donating the stickers for the items so everyone knows they're from one preemie to another.
And just tonight another friend who works for Build-A-Bear Workshop is going to arrange a donation of mini bears for the current NICU residents. (And an extra bonus, posted below.) We're SO excited!
There is no way that we could ever re-pay the hospital for Robbie's life, but it means so much that people want to help us try.
To up the ante, we've decided to sweeten the pot a little.
Every person who makes any donation towards the effort (it will need to be received by May 28, 2009) will be entered into a raffle.
Right now, there are at least 2 prizes:
$25 gift card to Target
$20 "Cub Cash" to Build-A-Bear Workshop (another donation!)
More may be added later. It doesn't matter what you donate. Even a 99 cent sheet of stickers could win you a prize.
We look forward to hearing from you.
Reminder: Just email me at firstname.lastname@example.org or comment on the blog for mailing instructions.
-Trish, David & Robbie
Posted by David, Trish and Robbie Cox at 11:14 PM
Friday, April 17, 2009
an addendum to the post below:
For those who want to do something small (money is tight these days, believe me, I know!) one suggestion is maybe some craft stuff. Even a sheet of cute stickers.
The nurses make signs and decorations for the babies' isolettes and rooms. I still have Robbie's hanging up in his nursery.
Seriously, even a dollar sheet of stickers would be put to good use.
And because I didn't make it very clear, I plan to take the stuff to the NICU on May 29. So donations only need to be in by May 28th.
Posted by David, Trish and Robbie Cox at 7:41 PM
NICU babies are tiny and fragile. The parents are terrified.
When Robbie was born, we had exactly one thing bought for him. Every time someone asked if we had a _________, our response was the same. "We were going to do that in the third trimester." Only the third trimester never came. And once Robbie got here, the last thing we wanted to do was go shopping. We spent every waking hour at his side. When I TRIED to go out and do something to get ready, I was overwhelmed with guilt and worry.
And we weren't alone. We were surrounded by other parents who were just as terrified and unprepared as we were.
Sometimes at night, I lay in bed and think about and pray for the current NICU babies. I pray that their parents are comforted, that God holds them in His hands. And I pray for the caregivers that their decisions are guided and well thought out.
In our time, I was amazed that this... hell... was going on all across the world all the time. When I had been blissfully feeling Robbie kick my bladder, some parent somewhere was worrying about their tiny, fragile, sick baby in an isolette.
And it continues.
As I type this, parents are still going through it.
But there was so much hope. So much help when we were there. The nurses weren't just Robbie's caregivers, they were mine.
The day before I went back to work for a short period, I was at Robbie's bedside crying. Nurses that had never been assigned to Robbie came to pat my back, give me a hug and encourage me.
They made Robbie comfortable. They rubbed his head and stilled his hands. But they made sure I had water and they held my hand.
We watched nurses cry over other babies, hold other parents' hands, stop their paperwork to just hold a baby whose parents couldn't be at the hospital all the time.
My favorite doctor would come in and ask how I was and when I would say okay. He'd shake his head, sit down and respond "No. How are you REALLY?" And then he'd comfort me. I could tell him I needed a pep talk and he'd give me one.
And the parents around me, well, what can I say? They kept us sane. While our friends and family members did everything they could to comfort and support us, no one who wasn't living the day in and day out of apnea and alarms and test and pokes and tubes and oxygen could truly get it.
Even when Robbie was having a bad day, his NICU friends might have a good one, and it gave us something to cheer about. And when Robbie was having a good day and they a bad one, we were blessed to have them cheering for us.
As much as we were so ready to have our little guy with us, there are elements of the NICU that were truly special and are missed. The sense of teamwork, the support, the safety, the never-having-to-tell-someone-to-wash-their-hands.. it was special.
And that is why, with Robbie's birthday approaching (6 weeks, how did that HAPPEN?), we are hoping to thank the place that literally saved his life time after time, we are asking for everyone's help in donating some items to the NICU in Robbie's name.
We toyed with several ideas, but in the end decided we'd like to give anything.
Robbie received many donated items during his stay. From hand knitted hats to crocheted blankets, donated books, and tiny clothes, we benefited from generous act after generous act.
We'd like to pay it forward. We will be donating all of Robbie's outgrown preemie clothes and receiving blankets. And we'd love to have more.
A few people have expressed that they'd love to donate some blankets and a dear friend is going to make hair bows for the girls. We've had some ideas of books to read to the babies. We'll take it all.
If you'd like to give in Robbie's name, please Contact Us and we'll give an address for donations. It could be anything a baby could use. And if you aren't sure what to give, prayers are always welcome. Pray for the babies, the parents and their caregivers. Those were truly our most treasured gifts during our time.
Thank you for helping us pay it forward.
--Trish & David
And as a little pre-thank you: a little Random Robbie to brighten your day.
Posted by David, Trish and Robbie Cox at 12:36 AM
Wednesday, April 15, 2009
Robbie has had a very eventful couple of weeks.
Last Thursday he had a NICU follow up evaluation. The NICU does checkups at regular intervals (6 months for a while, then every year) to monitor how their grads do. It is mutually beneficial because not only does it help identify any problems the children have, but also provides feedback to the NICU on areas they could improve upon.
It's programs like these that helped identify that too much oxygen was leading to eye damage and since then, the rate of blindness in preemies has lowered immensely. (Your fun (not so fun?) fact of the day: Stevie Wonder is blind from this. He was a preemie on oxygen.)
The evaluation itself was pretty painless. Robbie seemed to think most of it was actually pretty fun. He loves people, so he got the opportunity to flirt and play with some new toys. The only bad part was the tummy evaluation. He still hates tummy time!
In the end, it netted few surprises. Since we had Robbie evaluated by our state's Early Intervention program as soon as he got home, they re-evaluate him on a regular basis. We already knew he was behind in gross motor skills.
Basically, they evaluated him in three areas:
Both Developmental and Gross Motor skills were assessed at his adjusted age (7 months.) He did have a few 8 months skills as well.
Gross motor was unsurprisingly sucky- 5 months. They agreed that it is all attributable to his stomach trouble and were happy to hear that we are already receiving in home therapy.
The only part that truly took me be surprise was how upset the neonatologist was about Robbie's lack of eating by mouth.
Now, clearly, we knew that not eating was bad. That's why we've been in the hospital, had a G-Tube put in and obsess over every ounce.
But Dr. Klesh was very concerned about his verbal skills. Basically he said that if he doesn't eat, he won't speak. Truthfully, he scared the crap out of me.
He recommended that we see the clinic's feeding team ASAP. He was so concerned that he actually had us worked into an earlier slot than was actually available.
It was scheduled for Monday 4/13.
In the meantime, though, Robbie and I took our first road trip! Easter was Sunday and his grandma's birthday was Monday, so we drove down to Sikeston, MO to spend a long weekend with her.
Robbie did very well on the trip. He made it 2 hours before becoming pretty insistent about stretching his legs. Unfortunately it was pouring rain so stopping at a rest stop or something wasn't an option. So a gas station it was.
Since Robbie's never been anywhere in public that wasn't a medical center, I was very nervous, but I took my disinfectant wipes with me and kept my guard up. Fortunately no one tried to touch him. They were content to just ooh and ahh.
Of course, I got the usual question- "How old?" and when I answered "10 1/2 months" I got the usual shocked look. "Really? He's so tiny?!" I resisted the urge to say something smart and simply explained that he was a preemie and was very small to start with. Someday I'll get used to that.
Anyway, we then headed off to grandma's. Robbie had a great time. He got to visit with his grandma and his uncle and even said hello to a neighbor across the fence.
Easter brought lots of fun toys. In usual child fashion, his favorite thing was the card he got from his grandma. He spent hours gnawing on it.
We headed home that night. Once again, he traveled well. He got a little fussy again about 2 hours into the trip but was able to be placated with a pacifier so we didn't have to stop.
Monday was the big feeding evaluation day. I was pretty nervous, but it went very well.
He saw an OT (occupational therapist) and an SLP (speech language pathologist.) They watched me attempt (quite unsuccessfully) to feed him a bottle and (somewhat successfully) some bananas.
They asked a lot of questions and observed him.
In the end, the outcome was both good and bad.
Robbie's way ahead in speech. The SLP doesn't think he needs speech therapy at all. She had actually misread his file and thought he was 10 1/2 months adjusted instead of actual. She said he was "right on time." When we corrected her that he was 10 1/2 months ACTUAL, she was overjoyed. "Oh, well he's WAY ahead, then!" Basically because he has two syllabls (mamama and bababa) he's doing well. She actually thinks he'll speak early.
I told them that Dr. Klesh had scared me saying that if he didn't eat, he wouldn't speak. They shook their heads and were adamant that is not the case.
They said that because he is so oral in every other way except food, he's keeping up his oral skills. Since he likes to chew and explore with his mouth, he sucks on his pacifier and other thing, he's learning to use his lips and tongue just fine.
The do want our home OT to make sure he keeps up with his oral skills, but it's more of a "keep an eye on it" situation than a "needs intervention" situation.
What a relief!
They don't have any grand solution for his eating. They pretty much said that I've already been doing everything I should be. They were pleased with the games I play to get him to take solid food (even though it's very small amounts), and recommended a few extra tricks, but really said just to keep doing what I'm doing.
Their only real recommendation was to get us hooked up with a developmental nutritionist to help figure out how to get the most calories into him. I told them that we'd worked with a nutritionist already, but they wanted us to have a specific type of nutritionist to come to the house and work with our OT. It's all about figuring out what we can get into his tube that doesn't anger his reflux any more than absolutely necessary.
They said that it will very likely be several years before we're past this. They agreed with our pediatrician that it may very well be kindergarten before we get through this.
While it was nice to hear that I was on the right track for managing things, it was also pretty disheartening to think of years more of this. But I suppose that we deal with what we're handed.
In the meantime, Robbie has been having a HORRIBLE reflux flare up. It honestly was as bad as it's been in about 6 months. We upped his meds and he was still screaming with every meal. We've adjusted his meds again and it seems to be improving a bit again, but we had yet another (this makes 4!) upper GI today just to make sure that his hiatal hernia hadn't reared its ugly head again. Thankfully the radiologist told me that everything looked okay. He did confirm that he has a lot of reflux (DUH!) but all of his surgical repairs are intact. Relief!
And now for some Easter weekend pictures!
Who ya talkin' to, Grandma?
Hmm.. these bananas aren't half bad.
I can do it myself, mommy.
Pardon me, I believe I have a banana in my eye.
Getting a bath in the sink at Grandma's house. I think it's the first time I ever smiled while being bathed!
Getting dried off is still better than getting washed.
Hangin' out with Daddy.
Did you need somethin'?
Blue eyes lookin' at you.
I'll read the instructions for you, Daddy.
Always with the camera?
Hey! I know you!
What's this over here?
Nom nom nom! Yummy card!
Uncle Boo Boo keeps me company.
Relaxing with Grandma after a long day.
Posted by David, Trish and Robbie Cox at 10:45 PM
Tuesday, April 7, 2009
I believe I mentioned that Robbie has recently started babbling.
Tonight I managed to catch it on video. I've got two. One he's mostly yelling, but you get a little "mama" action and you can see him. The 2nd you can't see squat, but you can really hear him carrying on.
Good visual, mediocre babbling:
Dark, but good sound:
For the record- no, we don't just leave him yelling. He'd been like that for hours. What good are kids for if not to laugh at?
Posted by David, Trish and Robbie Cox at 9:23 PM
Thursday, April 2, 2009
It was an exciting day in Robbieland today. And he didn't even have to leave the house.
We started our morning with a visit from an old friend.
Lexi was one of Robbie's friends from the NICU. She was born about 6 weeks after Robbie, but wasn't quite as early, so her adjusted age is about a month ahead. Though Lexi's mom and I have kept in touch since we were released, we hadn't actually seen each other since September. Since Lexi and Robbie aren't really into the phone or email yet, they've been out of touch. Today they got reacquainted.
Truth be told, it might have been more fun for the mommies than the babies. After months of seclusion, I'm glad to see adult faces. The fact that it was a face who truly understands the challenges and joys of a fragile child (one who also doesn't like to eat, as it happens) made it even better.
The kiddos mostly ogled each other toys, while the mommies compared notes on child rearing. Lexi has all the same doctors as Robbie (pediatrician & GI doc. We've even used the same surgeon a time or two) so we had a lot to compare notes on. It was really nice to talk to someone who both understands the lingo and the emotions involved in raising a preemie.
Robbie then took an afternoon nap. He occasionally sleeps with his eyes partly open. It's actually a little creepy. I think he likes to keep us on our toes wondering if he's really awake or not. Plus he doesn't want to miss anything.
Before he could even wake up from his nap, we had a visit from a physical therapist for an evaluation. Jenny did a thorough check of Robbie's skills and wrote a report.
Unfortunately, he scored a bit further behind than we were really expecting, but she did comment that he seemed to be on the cusp of a lot of skills, so hopefully with a little therapy to help him along, he'll be caught up soon.
The evaluation is broken down into 3 categories, and his gross development aged him as follows:
Reflexes: 5 months
Stationary: 2 months
Mobility: 4 months
As Robbie is 10 months actual and 7 months adjusted, that was a little hard to see in black & white. We knew he wasn't doing some things we'd like to see (rolling from back to front and sitting, for example) but didn't realize some of the other things (specifically moving his head and hands in certain ways) were behind as well.
She did say that he had strong fine motor skills and liked a lot of his footwork, so it wasn't all bad. And in a bright spot, he did start rolling from front to back yesterday, so that eased the sting a little.
She wants to begin physical therapy once a week starting in probably 2. In the meantime she showed me some things to work on with him and we started those tonight. Hopefully by the time she's back to start the therapy he's already made some progress.
Posted by David, Trish and Robbie Cox at 12:24 AM