Sunday, November 30, 2008
Friday, November 28, 2008
It's been both a hectic week and a hectic year. But both bring much to be thankful for.
On Tuesday, we were able to have a get together with Robbie's NICU BFF Gavin. Gavin and his mom came first and hung out for a little. Then his dad joined us and we all had dinner and visited.
Since we can't get out much or see almost anyone with children, it was nice to have company. We're grateful to have friends!
Thursday, Robbie visited the pediatrician again for a weight check. Unfortunately he wasn't quite up to snuff. He weighed in at 7lb 7oz. We would have preferred to see something closer to 9lb.
His eating had been worse and worse. The reflux continues to plague us. It's frustrating and upsetting to see him fight his food. Despite being starving, he'll swat at his bottle, hide his face, cry, squirm when you try to feed him. David calls it "full combat mode."
Dr. P upped his medicine and suggested adding formula to his breast milk again in an effort to up his caloric intake.
The worst part is that his poor weight gain gave him a diagnosis of "Failure To Thrive." It's really just an ugly term that means "not gaining weight properly." but it's hard not to cringe at the word "Failure" in regards to your baby. As his mother, my most basic function is to feed him. So when he doesn't gain, I can't help but feel like the failure is mine.
Fortunately Dr. P was overall very positive. Developmentally he's right on track for his adjusted age. Her exact words were "his physical exam is perfect." If only we could get him to gain more weight, everything would be bliss.
The good part is that since she upped his meds, things have improved. While we still have some battles to eat during the day, his overall intake is better. We see the GI specialist next week and are hoping for a better weight gain.
The formula was pretty much a no-go. He'd eat even less than and then proceed to scream for an hour afterward. He just doesn't tolerate it well. We're back to plain breast milk again now and doing better.
On Saturday, Robbie got his first Synagis shot. It's a shot to help protect him if he were to get RSV. RSV is a very common virus that for most people means minor cold-like symptoms. But for newborns, particularly preemies, it can be very, very serious. Synagis is not a vaccine. It would simply lessen the severity of RSV if he were to contract it. We certainly hope NOT to get it. That's the reason we're under quarantine until April. Synagis is very expensive and insurance companies don't like to pay for it. We were very fortunate to qualify for it. Thank goodness for the medicine and for insurance to cover it!
In other thankful news, David's cousin received a heart transplant this week! Becky has struggled with her heart for a number of years. This summer it became clear that she was going to require a replacement and she's received one. She's currently in the hospital here in the city undergoing treatment for rejection. We'd appreciate your prayers for her and for the family of the person who donated the heart. He or she is truly a hero.
Last weekend, I was able to attend the baby shower for our friend Amy. It was the same day as the trivia night for their benefit. I was thankful both to be able to be out of the house and to celebrate their baby.
We weren't able to attend the benefit, but for good reason- IT WAS SOLD OUT! They were able to raise some money for Matt & Amy and that's always a reason to be thankful.
In a the-world-is-small twist, America's Got Talent contestant Neal Boyd was on hand to sing Amazing Grace. He actually went to school with David and used to sing at his church on occasion. David was disappointed that we didn't get to attend if for not other reason than to see Neal.
Of course, the biggest reason to be thankful this year is obvious- Our own remarkable Robbie. His conception was a miracle to start with. His birth yet another. And the amazing way that he is progressing is yet a 3rd. We truly are blessed.
Finally, we are incredibly thankful for God's amazing grace and love. Without him, none of this would be possible.
Posted by David, Trish and Robbie Cox at 6:27 AM
Tuesday, November 25, 2008
Wednesday, November 19, 2008
My birthday present from my dad this year were professional pictures.
We had our session this past Saturday.
The photographer was wonderfully patient. (And in a small-world-isn't-it moment, it turns out we went to the same high school.)
Robbie did pretty well considering I woke him to get him ready and by the end of the session he was starving. (It was one of those days where he ate every 2 hours or so ALL DAY LONG.)
These are just the sneak peak pictures. The rest will be ready in a week or so. I'm so pleased.
He's so beautiful.
Posted by David, Trish and Robbie Cox at 8:12 AM
Sunday, November 16, 2008
Robbie is now 24 weeks old. Can you believe he's been outside as long as he was inside? Yes, I was 26w pregnant, but you know, that counts the 2 weeks before he was actually CONCEIVED, so really, he grew for 24 weeks in my belly (well, since we're being precise- in my uterus) and has now grown for 24 weeks outside as well.
The weeks and days continue to amaze me. Tonight I discovered his belly is ticklish. He smiles and scrunches up his nose when you lightly tickle him. The most fascinating thing in the world remains to be the ceiling fan. If I'm really desperate to distract him, airplane up near the fan usually does the trick.
He's becoming more and more independent. Now when he's cranky, one of the first thing to try is to lay him on a bed and let him kick his legs. The playmat works, too, but more often than not, he's happier just laying in our bed or the twin bed in his room.
He loves to sit up. One of favorite games is to sit with his butt pressed against my leg for leverage, let him grab my hands and then he does a sit-up. I try to let him lean back and he struggles to stay upright.
Of course, he still hates his bebe pod seat. As much as he likes to sit up, he should love it, but really, he seems intrigued for a minute- maybe 90 seconds. Then he lets loose a nearly painful screech of displeasure. GET ME OUT!
His new bouncy seat rules, though. It has an adjustable back so he can be sat most of the way up. It also rocks, vibrates and plays both white noise and some rather soothing music. It's also raised. Great for us not-so-young parents.
His favorite toys are the toy that came with the bebe pod and the purple elephant on his playmat. He's also fond of the giraffe and parrot, but the elephant seems to particularly enthrall him. He's starting flailing in a more meaningful way- making contact with things and then widening his eyes in surprised elation that HE made it MOVE.
He's getting better at getting his hands in his mouth on purpose. Usually a whole fist when he's hungry, but occasionally just a thumb which seems to please him immensely. I often know he's found it from across the room because he smacks so loudly on it.
Learning all his ins and outs just amazes me. He's this little........person. Seeing things through his eyes fills me with amazement. The things we take for granted!
And his smiles! Bon Jovi wrote he was Livin' on a Prayer. I feel like I'm livin' on a smile. The boost just a flash of a grin can give me is amazing. Suddenly I'm energized- To try to make it happen again!
No amount of self-mockery or non-sense spewing is over the line if it has a chance of eliciting the holy grail of parenthood- a laugh. He isn't quite laughing out loud just yet. It's more of a head-thrown back strong "HEH!" but it's completely recognizable as laughter. A mom could live for a week on just one of those gems.
I feel so incredibly blessed to be able to accompany through all of his milestones and achievements. My life is no longer mine- I'm simply a guest at the dinner theatre of his life.
Hmm. A new seat. Let me ponder...
Nope. No likey. NOT ONE BIT.
Daddy and Grandpa are full on ribs and enjoying Sunday football with me!
November 3, 2008, 4am.
This woman called "Mommy" says good babies should be sleeping in their beds now. I seem to have found a more comfortable place and think a bed is a poor substitute.
The furry striped thing has taken up arms on my side.
Attempts to persuade her continue to be met with resistance.
Daddy has TV. I have the ceiling fan. Life is good.
Lift those legs, lift those legs, work the core!
My new favorite toy
My fancy new seat
This week my friend Jen came to visit me and mommy!
Posted by David, Trish and Robbie Cox at 3:13 AM
Saturday, November 15, 2008
I'd like to draw your attention to the upper right corner. It takes 45 seconds and no money to help be a voice for babies like Robbie.
The U.S. was given a D on the report card on premature birth.
We keep hearing about how our nation has the best health care in the world. This should make us hang our heads in shame.
Please, sign the petition so we can stand proud again.
Posted by David, Trish and Robbie Cox at 1:49 AM
Thursday, November 13, 2008
Eat, sleep and poop. They tell me that's what babies do.
Someone forgot to tell Robbie about the first two.
Sleeping is a bit of a roller coaster. We had one night where he actually slept 6 hours straight. I actually felt like a new woman- it was amazing!
Of course, with 2 steps forward comes a step backward. He doesn't nap. And sometimes he doesn't sleep at night, either.
He will drift off a time or two during the day- but usually no longer than 20 minutes at a time.
David was off work yesterday for Veteran's Day, so I took the opportunity to have my gallbladder scanned (no results yet) and left the boys by themselves for 4 hours.
I came home to find a defeated lump that vaguely resembled my husband.
He muttered several times during the day "but he didn't sleep for 10 minutes.."
I reassured him that yes- that is normal for Robbie.
I suppose it gave him a good glimpse of my daily routine, but I KNOW how exhausting it is. You think "oh, I'll eat some lunch" or "Oh I'll take a shower" except that by the time you gather supplies for either thing, he's already awake and crying.
Now, he's perfectly content to be held. He's not an unhappy baby at all. As long as you're willing to meet his terms, that is.
As for eating, it's been a rough few days.
We finally got his Prevacid filled on Saturday after a rather ridiculous hassle at the pharmacy. (Fortunately I know how to be a little ridiculous myself when required) and Saturday and Sunday were like a dream. He was eating! And not crying or flailing or hiding his face!
I had begun composing a glowing letter of praise to the manufacturer of my miracle drug!
And then came Monday. And flailing and crying and hiding his face. So much for miracle drugs.
The last two days have been exhausting. Usually I can get close to 3/4 of a feed into him, wait an hour and get him to take the rest. It's not a perfect system as it leads to feeding him ALL. THE. TIME. but at least he's getting the calories.
But the last day or so even that hasn't worked. He's flatly refused to eat more than half a feeding every 3 hours.
I'm hoping tomorrow shows an improvement or a call to the doctor might be warranted.
We have a weight check next week. I'm praying it's not as disappointing as I'm afraid it will be.
I know it's not the end of the world- he's growing. He is. Not as the speed we'd like, but he'll get there. Eventually. And the worst they'll really do is add formula back to his breast milk. We can manage.
Formula is a complete pain in the butt for a lot of reasons, but we've done it before and we can do it again if we need to. I just hope we don't need to.
Reflux sucks. That's all I can say. It sucks for Robbie most of all, but it sure makes everyone else miserable, too.
If you could add some prayers that it fixes itself soon, we'd really appreciate it.
Posted by David, Trish and Robbie Cox at 3:29 AM
Friday, November 7, 2008
I just wanted to take a moment to ask everyone to visit Matt's Entourage. Matt's wife is a friend.
After trying to conceive for some time, they were finally successful in getting pregnant through IVF.
Very shortly after they found out their joyful news, Matt became very ill. After extensive tests, they discovered he has brain cancer. The outlook is grim. He's only 31.
If you are local and like trivia, some neighbors are hosting a trivia night. Or if you'd like to donate, the information is on the web page.
If you're unable to do either of those things, I ask that you please pray for them.
Posted by David, Trish and Robbie Cox at 11:04 AM
Thursday, November 6, 2008
Robbie had a follow up appointment at the GI specialist today.
We met with the nurse practitioner. She has 26weeker twins. We bonded it was good.
She completely changed his meds. Instead of Mylanta, he'll get a prescription form that should work a little better. And instead of Pepcid, she prescribed Prevacid.
Apparently my insurance doesn't cover formulary Prevacid, though. So that's still being worked out between the pharmacy and doctor's office. I'll make some calls tomorrow to try to urge things along.
The frustrating part is that his weight gain wasn't quite up to what we would have liked. It wasn't terrible, but it wasn't great.
Ideal would be a gain of an ounce/day. Acceptable is 1/2 ounce/day. He only gained 6 oz in 16 days. That puts him at 6lb 15oz.
Hopefully the new drugs will do the trick and he'll start eating better. Right now, he eats about 3/4 of his bottle and switches into what David calls "full combat mode." He arches his back, flails his hands, fights against the bottle. He is clearly still hungry, but the actual act of eating hurts. Sometimes even as he's eating, you can hear the war waging in his esophagus- food trying to go down as it also tries to come back up.
It's a pretty common problem in babies and even more common in preemies. We're hoping he'll outgrow it soon. Many babies outgrow it around 3 months- even more around 6 months. But we all know that Robbie does things on his own schedule.
He's 9w adjusted now. It'd be really nice to have things drastically improve in the next 3 weeks or so.
Keep your fingers crossed!
Posted by David, Trish and Robbie Cox at 3:31 AM
Saturday, November 1, 2008
I found a new place for blog backgrounds that you can change w/o losing all your gadgets, so I decided to pretty the place up a bit.
Plus it's halloween!
Robbie actually ended up with 2 Halloween outfits. While he was still in the NICU and teeny tiny, my dad showed up with a cowboy outfit.
He showed up a couple of weeks ago with a pumpkin pram.
So we had two days of cuteness!
Yesterday he was a pumpkin and tonight he was a very, very sleepy cowboy.
On the front porch
In Mommy's chair
Every good cowboy has a horse and a few cows!
Pardon how rough mommy looks. In case you haven't heard, I don't sleep at night.
Posted by David, Trish and Robbie Cox at 1:56 AM