Tuesday, January 26, 2010

The Walk

I've talked about the March of Dimes before. The research they supported is responsible for Robbie even having a chance at life. The development of surfactant alone leaves me forever beholden to their organization.

But that isn't all the March of Dimes does. As a group, the MoD is trying to save babies. Babies who would never be conceived, babies who would be lost to miscarriage or stillbirth, babies who are born too soon or with birth defects are all helped by the mission of the March of Dimes.

When we were having difficulty trying to conceive, their website offered information, when we suffered two miscarriages, they offered research and hope and when Robbie was born, they offered life for our impossibly tiny son. In the years between our initial desire to become parents and now, we have seen so many others affected by these same circumstances and more. These days I think I know more children born prematurely than I do born at full term. And we've seen other friends fight birth defects to help their children grow and thrive.

In short- the March of Dimes is as close to my heart as any organization can be.

At this time last year, we were still in quarantine. We were under strict orders not to go anywhere except doctor's appointments. So when the annual March of Dimes March for Babies was scheduled, we were saddened that we could not participate. At that time, I made David promise that next year would be different. Next year, we'd be able to give back.

Well, "next year" has become this year and the time now! I'm more excited than even I had imagined.

Robbie has his own team and we are, of course, proud members. We are hoping you will join us. We, of course, would love to have donations. The money will go to save children just like Robbie who need the medical care that the March of Dimes allows for. But even if you can't donate, we would love for any and all of you to join our team and walk with us.

The walk we are participating in is April 24, 2010 in Forest Park, St. Louis, MO. There are more details on Robbie's team page as well.

In the coming weeks and months, we are hoping to sponsor a few prizes for those who donate either of their wallet or their time, so be on the lookout for those opportunities. If you do make a donation in Robbie's name, please be sure to leave a comment either on the team page, the blog or send us an email to let us know. Everyone who participates will be entered in a few drawings. You could even win your very own Remarkable Robbie t-shirt. I know you're excited!

We truly hope to see you all there. With enough support, maybe some day foundations such as the March of Dimes won't be necessary any more.


Friday, January 15, 2010

So close...

He is just so close to walking. I keep catching him "cruising" up and down the couch but not holding on to something. If he wants to go between pieces of furniture, he'll crouch down and streeeetttccchh to get his fingertips to the next piece, then go. He doesn't NEED to hold on at all. He just thinks he does.

Two very short examples from tonight:


Wednesday, January 13, 2010

Tubes, recapped

Sorry for the delay in posting the full recap. I've been having computer difficulties. Anyway....

Tube day went very well, minus one very unpleasant hour.

Robbie wasn't allowed to have food or drink after midnight, which was fine. He woke up tired, but pleasant and we headed off to the hospital.

In the surgical reception area, we waited to be called.

Robbie wondered why were back in this place AGAIN.

Once we were taken to the back, Robbie was given some scrubs to wear instead of a gown. They were handy, but also about a foot too long. He apparently approved, since we got some random applause here.

Then we just settled in to wait. Surgery was scheduled for 10:10.

Unfortunately 10:10 came and went. In the mean time, Robbie managed to confound a lovely and attentive, but confused nurse. There was a bit of a run of "Who's on first?" conversation in which I explained approximately 457 times that yes, Robbie CAN eat, but he doesn't. She kept insisting that he couldn't swallow. I explained that he can and does swallow. He just won't eat enough to survive on and won't drink at all.

We went around and around:

Nurse: so he chokes?

Trish: No, he can swallow fine.

Nurse: So why does have have a G-tube?

Trish: Because he won't. If you give him a little bit of liquid from a syringe or something, he has no trouble. But he'll only take maybe a third of an ounce before he gets angry and starts spitting it out.

Nurse: So we should give him his meds in his tube?

Trish: We can, yes. Or orally. Whatever is simplest.

Nurse: But he can't drink.

Trish: No, he can drink. We give him meds orally all the time. He does fine.

Nurse: And he doesn't choke?

Trish: No. He's physically capable of swallowing.

Nurse: So why does he have a tube?

Trish: Because he won't take in enough nutrition to live on.

Nurse: So he has trouble with liquids?

Trish: No, he can swallow. He has all the skills required to eat and drink, he just won't. He'll eat small amounts of baby food, but that's all. Just go ahead and put everything in the tube. (Hoping to stop re-explaining.)

Nurse: What about something to drink after the surgery?

Trish: Well, we can offer him something, but I doubt he'll drink it. We will probably have to tube it.

Nurse: So he won't choke?

Trish: [looks around for candid camera]

Robbie practiced his cruising skills while we waited.

He was mesmerized by the mounted television.

Cartoons... on.. the... ceiling...

As it approached 11 am, the surgical team started preparing, so we had a little play time before the main event.

And a little snuggle time, too.

11:00, they're here to get him. I wish a little nervous, but Robbie thought it was great fun.

He was out of my arms for maybe 10 minutes. That's stretching it. They came to tell us he was done, everything had gone fine. The doctor said he has a LOT of very thick mucus in his ears. His left ear drum was also bowed in a bit indicating it had been a chronic condition. We were sad to hear that, but it wasn't unexpected. I don't think he'd been more than 10 days without an ear infection since August.

I went to the recovery room to see him and he was upset. They warned us that he would be very angry. They explained that they are out for such a short period of time that they have so much gas in their bodies they have a hard time coming out of it and they get very angry. They were not exaggerating.

Once they confirmed that his oxygen saturation was good, we went back to our room and were told that the next hour was "about keeping him safe." He was so angry that he was flailing, head-butting, kicking and pretty hysterical. I held him as long as I could, but eventually my arms just gave out. It was like wrestling a crocodile. David and I then took turns trying to soothe & contain him.

After about 45 minutes of wrestling, he was starting to lose a little steam, but was still very upset. Consider yourself warned if you watch the video. He's NOT happy. He's okay, not in any pain, but just really out of it.

Shortly after the video was taken, I decided we'd try to walk the halls. He'd spent part of the morning trying to crawl up and down the hall (and getting frustrated with me when I objected to his crawling on a heavily trafficked hallway.) Once we got to the hallway, he calmed down significantly. Distraction was our savior.

As we walked down towards the nurse's station, our nurse asked how he'd handled his liquids. I was a bit confused as no one had given him any fluids. She seemed confused (again) and asked if I wanted some juice or something. I said yes. She asked how I wanted it. In fear of repeating the earlier circular conversation, I asked for it in a sippy cup, figured I could at least try to moisten his lips a bit, then could pour into the tube if necessary.

She gave us 4 oz of apple juice and diluted it with a bit of water.

Back in the room, I passed Robbie to David. Robbie immediately started complaining again. I then dribbled a little bit of the juice into his mouth and he immediately stopped and licked his lips.

And this was the big surprise of the day. He seemed to like it. Keep in mind that Robbie hasn't willingly drank anything in nearly a year. We've been able to drip maybe a half oz of water or milk or juice into his mouth and get him to swallow it fairly regularly, but he is just tolerating our efforts, not participating in them. But this time, he seemed interested. I offered another dribble. He swallowed and when I pulled the sippy cup away, he reached for it. David and I both froze. Of course, I immediately offered it back. And he kept wanting more dribbles and more dribbles.

About 10 minutes later, he'd drank about an ounce and a half. I was overjoyed! But he wasn't done.

He just kept going. Eventually he actually started sucking on the sippy cup. I could hear gulping, see bubbles in the cup. My eyes welled up with tears. I didn't know he still knew how. The nurse came in and I exclaimed "He's drinking!" and she just stood and watched. She commented that he was doing well and I had the pleasure of replying "yes, like I said, he CAN drink. He just usually won't. I guess it just takes 12 hours of no food or drink, a bunch of gas and oxygen and screaming for an hour straight to get him to do it."

Thankfully, after I picked my jaw up off the floor, I realized I should record this for posterity, so I took a video and the above photo. (Pardon the other child screaming in the background. All of the kids were furious as they came out of surgery.)

In the end, he drank the whole cup. About 6 ounces over 20 minutes or so. If we tried to give him 6 ounces of liquid in his tube that quickly, he'd puke. But I guess since his body knew he was drinking it himself, it accepted it? I don't know, but it was amazing. When there was about 10cc left in the cup, he declared "done!" and pushed the cup away and wouldn't take it again.

At that point, he was happy as a clam and ready to go. We got him dressed and did our checkout stuff and off we went.

Waiting for Daddy to pick us up at the door.

All in all, it was a good day. He fell asleep about 5 minutes into the car ride home and even after we got home, he went right back to sleep and took a long nap. I gave him some Motrin when he woke up just in case. But honestly he didn't mess with his ears or seem uncomfortable at all. He wasn't a huge fan of the ear drops, but he did okay.

Unfortunately we haven't had any repeated success in getting him to drink again. But seeing him drink that way was honestly amazing and did a lot to bolster our spirits and confidence that he will get there some day.

As of right now, he's had the tubes for a week and so far so good. No ear pulling, no night waking, no antibiotics. He has a follow up appointment with the ENT in a month and at that time they will do a hearing test. Hopefully this will be the end of the ear nightmare.


Wednesday, January 6, 2010


Only have a minute (crazy day!) but wanted to update and say that Robbie did great. The doc said he definitely need them, his ears were completely filled with very thick fluid and his left ear drum was showing signs of long term trouble, so it's good they're in.

Recovery went normally. He was a complete monster for about an hour (we were warned they come out of anesthesia very angry) but since then has been fine.

I'll try to post a blow-by-blow (with pictures!) and a REALLY fun surprise later tonight or tomorrow.

But they're in and we're HOME! I had to unpack my overnight bag! Woohoo!


Tubes Tomorrow

Just a quick drop in to say that Robbie's ear tubes are going in tomorrow morning. Surgery is scheduled for 10:10 am. It's a 5-10 minute procedure. They don't even give an IV or intubate for it, they just gas them through. HOPEFULLY that means we'll be home very shortly after the surgery.

However, Robbie and anesthesia are not friends. His first surgery he took 3 days to come off the ventilator (thus shortening his mother's life by at least 5 years) and the 2nd surgery which was supposed to be outpatient ended up as 1 night in the PICU and 2 nights on the peds floor.

I have an overnight bag packed just in case. I will very gleefully unpack it tomorrow evening if we get to come home, but if not, I'm prepared. I've sent David home to pack in a hurry way too many times. I do not wish to repeat that ever again.

Prayers for smooth sailing & quick wake up very appreciated!


Saturday, January 2, 2010

A Year In Review- 2009

January 2009 was fairly quiet. Robbie had good head control but wasn't eating well, so was still pretty tiny.

February brought another trip to the hospital. This time for Failure to Thrive, as his lack of eating had caught up to him. The month was spent with an NG tube to add nutrition to his diet.

March saw another surgery. The efforts to get him to eat just weren't enough, and it was then discovered that his hiatal hernia had recurred. It was repaired (re-repaired?) and a G-tube was placed.

April brought good health and some weight gain, and the beginning of a new skill - sitting up!

May was a big one! The beginning of the month brought an end to quarantine. We visited a few attractions, some friends, and rejoiced in simple things like going to the grocery store together. The end of the month Robbie celebrated his first birthday! We celebrated with a party for about 25 friends.

June brought some more pudge to Robbie's cheeks, but also his first bought with illness. His first cold was complete with wheezing and his first ear infection. Unfortunately both have plagued him frequently ever since.

July was pretty quiet. It was Robbie's last full month home with Mom full time and we just tried to soak up the time together.

August brought many changes. Trish had to go back to work, so Robbie headed off to day care for the first time. He'd also finally seen an improvement in his reflux, which meant less puking and a massive weight gain. So much that he officially went on the first diet of his life.

September was another doctor filled month. The ear and lung infections that started earlier in the year reared their heads this month and we saw the pediatrician at least once a week for the entire month. Robbie was now officially one year old, adjusted.

October saw Robbie's second Halloween as a Kangaroo. This year he actually got to leave the house!

November is the month of Thanksgiving. This year we were grateful for a huge developmental explosion in which Robbie learned to crawl, walk with assistance, talk and sign, and began to pull up.

December saw Robbie take his first steps. They're still very hard won and no more than 2 at a time, but we can now see walking in our immediate future. And of course, Santa! Robbie must have been a very good boy this year because Santa had to pack a second sleigh for just Robbie's toys.

All in all, 2009 has been a long, exhausting, exhilarating, amazing year. We hope next year brings as much progress, but maybe with a little less drama and certainly fewer doctor visits!

Merry Christmas (and Happy Holidays) to all... and to all a good night.

--Trish (and the Cox family)