9 month check up (at 10 months.)

It was mostly good.

He weighed in at exactly 11 pounds. 22 3/4 inches long. Of course, I never know what to think about length stuff because depending on the day and how cooperative Robbie is, he gains and loses and inch at will.

As soon as Dr. P walked in the room and said hello to him, he started screaming. As he's really quite friendly with most people, I was mildly horrified, but Dr. P was THRILLED. She said stranger anxiety is an "upper brain function" and should start between 6 and 8 months. (Keep in mind that he's not quite 7 months adjusted.)

He continued to scream with tears rolling down his face the entire time she examined him.

Being the world class mother that I am, I managed to walk out of the house without a pacifier so short of waiting for her to finish, I couldn't do anything to soothe him.

His physical exam was great. He's had a lump on his neck for a while and she confirmed that it's just a gland. (I'd asked about it in the hospital as well. But I wanted a 2nd opinion.) His head shape and size are excellent. (He's ALMOST on the chart for head circumferance, which also pleased her.)

She passed him back to me and watched to see if he calmed down right away. He did and that confirmed to her that he just didn't like her. And she loved it.


She asked what "things" he was doing and I was suddenly struck dumb and couldn't come up with his whole list of stuff, but managed to think of a few things and she was pleased.

We talked about the lack of rolling and she was pretty unconcerned. I explained that OT thinks he has the skills to do it, just no desire because it hurts and she thought that was reasonable. She managed to get him to sit up unassisted for a couple of seconds (he's REALLY wobbly.) and commented on how good his hand-eye coordination is.

I wish I'd have thought to mention how he's learning to turn his pacifier to put it in his mouth. That's a big one in my book.

She was also very happy to hear how well he's sleeping at night. We talked about his cat-napping during the day. (He rarely sleeps more than 20 minutes at a time during the day.) She said it's very common in babies that sleep as well as he is at night. That he may catnap even 4 or 5 times a day and it's fine. Eventually I can push him to stay awake through a morning nap to adjust his sleep/activity cycle, but for now it's fine the way it is.

Basically, she thinks he's right on track for his adjusted age. His gross motor delays are all attributable to his stomach problems and since we're already working with OT and likely starting PT soon as well, she's not concerned.

The only "bad" points were that he's too skinny. That obviously wasn't much of a surprise. She plotted his growth on the chart and it was pretty pathetic. So we discussed various ways of fixing it.

As I expected, she was more amenable to my way of thinking that GI has been. She thinks it's entirely possible that he just doesn't tolerate powdered formula well. She thought my proposals of trying liquid concentrate, increased volumes and added fats were all valid. She actually said she'd like to see him taking 28oz of breast milk every day. (He's currently getting 20.) I'm really not sure I can push him that far, but I'm certainly willing to try to increase it a bit.


And the "bad" thing that surprised me: Four more weeks of quarantine.

I had really expected to be released. Both of our NICU friends who see the same doctor were released. When I asked about it, she said that they are both larger and have more reserves. While RSV isn't a big concern right now, because Robbie is still so little, if he were to get sick at all (even a cold) he just doesn't have the stores to handle it and he's very likely to end up hopitalized.

So she wants us to work on bulking him up and giving it another month.

I won't lie- I'm bummed. I'd already mentally planned our first trip to the zoo. But he's worth it, so we'll stay home a while longer.

All in all, the good outweighs the bad by leaps and bounds. I'm calling it success.


--Trish

P.S. All the pictures are clickable to be seen bigger.

March 26

Big boys hold their own bottles.



I'm finally starting to hate baths a little less. I don't scream any more.



But getting out is still the best part.



You talkin' to ME?



All ready to go for a walk.



I love you Momma!


Haha! Upside down world is funny!



Contessa keeps my ear warm.



Mmmm parrot wings. A good source of fiber.



There must be some confusion. You seem to have put me down on my belly. HELP!

Catching up

Sorry for the quiet. Life with an infant is busy!

Things at home are good.

Robbie's eating comes and goes. Some days are good. Some days are bad. Most days are somewhere in between.

He seems mostly unaware of the tube in his stomach. Occasionally his hand drifts down to check it out, but he doesn't seem bothered by it at all.

Fortunately this time is going much better than the first time. It doesn't leak at all and as long as I keep the skin around it covered in Aquaphor, his skin seems pretty happy.

Robbie actually lost about 5oz after the surgery. They had him on a light diet for 2 weeks while he healed. During that time he managed to regain the 5oz but hasn't gained any more. So we're holding steady at 10 lb 12 oz.

As of this past Tuesday, he's now working his way up to a full diet so hopefully the weight will come soon. He does seem to be growing. He's definitely getting taller. We have a well baby check up at the end of the month and I'm curious to see how much he's grown then.

He's solidly in 0-3 month clothing. The last of his newborn stuff has finally been retired. I wasn't sure we'd ever see that day. It's been a lot of fun to dig out the new clothes.

It's also spring time here in The Lou. We've actually gotten to take Robbie out on a few walks. It's really been the first look he's had at the sun beyond darting in and out of the car between doctor's appointments.

All in all, life is good. No major leaps forward, but a good steady pace which is the best way to do things.

And now to catch up on a ton of pictures!!

This is a short video from the hospital. This is your baby. This is your baby on morphine.


A much happier Robbie. Though he's mostly mesmerized with the camera. I swear it's just a plain ol' point and shoot. No flashing lights or happy tunes.




Surgery


On mommy's lap waiting to be taken back to prepare for surgery:



In the pre-surgical holding area.


Post Surgery. Not feeling so well. Really flushed from the fever.


Finally catching a few winks after surgery.



I'm even cute when I'm stoned and in pain.



Finally feeling a little better.



Finally back home

Did you know I have feet?


They're elusive but there are TWO of them!



Hi everybody!


I could roll over if I really wanted to. I just don't want to.



I'm just watching the inside of my eyes. I'm awake. Really.



It's springtime! Time for a pedicure!



Peek a boo!

Am I in trouble?



Mommy took me for a walk!



There are geese in the lake. They're very interesting.



St. Patrick's Day. Kiss me, I'm Irish.



I think I bounced too much, mommy.



Look, I match my new quilt.



I love Contessa.




Elephant!

--Trish

Home!

We're home!!

Robbie successfully digested full feeds today.

We finally got released after about 4:00 this afternoon. It took a little time to get the paperwork done and get everything settled but we finally headed home around 6:30.

It's GREAT to be home. Robbie has his swing. I have my TiVo. Life is good.

So far Robbie's eating is about the same as it was before the surgery. I wish we were seeing a big improvement, but at least now we have the tube and know he can be nourished w/o having to constantly worry about him ripping the tube out. (It can still be pulled out, but it's much more difficult to do and easier to keep him away from.)

Now we just try to get back as normal a life as possible.


--Trish

Surgery

It's been a very hectic few days.

We're still at the hospital.

The surgery itself went well. The day started fairly well. Robbie wasn't too cranky about having not been fed and actually slept for a while in the preop holding area.

I did okay letting strangers take him only choking up a bit after they disappeared down the hall.

Our surgeon was pleased with how things went. He had plenty of tissue to work with and said he secured it a little extra to hopefully make sure it would stay put this time. It took about 90 minutes, just as he had expected. Robbie was off the vent before leaving the O.R.

I asked about pain management and he said probably just Tylenol.

The real trouble began in the recovery room.

They'd wrapped him up in warm blankets after the surgery and he got too hot. When they lead us back to see him, he was flushed and his temperature was about 101.

That earned him a Tylenol suppository. I got a cool cloth and dabbed at him while David fanned him. He finally cooled down enough to be transported to the PICU. He still hadn't stopped crying. He was grunting in pain with every breath.

Obviously Tylenol wasn't doing the trick.

Our day nurse was lovely and called for the staff pediatrician right away. He thought perhaps the transport had upset him. He wanted to give him a little time to settle in before doing anything.

Half an hour later, he was still very much in pain. The nurse called for the dotor again.

He agreed to a dose of Fentanyl. The helped for about 15 minutes.

More crying.

The nurse got the okay for another dose of Fentanyl- stronger this time.

That helped about 20 minutes.

The rest of the time was filled with Robbie crying. It varied between a low whine to a full out wail but nothing soothed him. Even touching him made him scream in pain so I couldn't hold him to try to calm him down. My heart broke.

Finally they paged the surgeon.

Dr. Coln came to look at him and agreed he was definitely uncomfortable. He wrote an order for morphine. It works slower but lasts longer.

That began a night of morphine every 2 hours.

That eased his pain so that he was quiet longer and cried less, but at best it was still a 10 minute cycle.

Then he went 8 hours without any urine output. At the same time, Robbie was beginning to seem more and more uncomfortable in his tummy. I put his feeding tube in to vent it. You can hold it up and let the gas escape. A lot did, but with it bubbled up all the food he'd consumed since the surgery.

The pediatrician got paged again. He was now NPO (nothing by mouth- no food) and they upped his IV.

In the middle of this, every time the crying would increase, his temperature would rise again. I get cold when I don't feel good. I think Robbie must get hot.

After another 3 hours, he'd finally peed a little. Just enough to save him from a catheter, but not enough to satisfy them. So he got a large saline bolus.

Finally about 3am, he started to settle a bit.

I laid in the recliner (no sleeping arrangements are made for the parents in the PICU) and tried to catch a few winks.

Around 6, the nurse changed his diaper and he'd finally had a decent output. And he was resting comfortably enough that she didn't give him that dose of morphine.

They drew some labs to make sure his electrolytes, fluids and blood levels were okay.

About 10am, they tried to give him a dose of Tylenol. They closed off his vented feeding tube to let it process but 45 minutes later, it came straight back out the feeding tube again. His guts still weren't working.

The labs came back normal. The granted us the blessing of being moved from the PICU to the regular peds floor. I'm not sure it made any difference to Robbie, but it was certainly better for me.

The PICU not only didn't have so much as a couch to lay on, but they also don't have bathrooms. I was having to use a public waiting room restroom two hallways over. Not exactly family friendly.

The new room felt like moving into the President's Suite by comparison. Our own bathroom, much more room, a TV, mini fridge and a fold out couch to sleep on.

The best part is that Robbie's pain finally seemed to have completely subsided. He was still not a big fan of being moved much and still didn't seem to be hungry at all, but at least he was quiet. He even consented to reaching for a toy or two.

A few of our old NICU friends visited which was nice.

And we waited.

Finally this evening, Dr. Coln came to check on Robbie and said we'd try feeding him a bit.

He took about an ounce of food about 6:45. At around 10, we checked- barely a cc was left. DIGESTION!

He also was STARVING. We couldn't warm a bottle quick enough for him. He ate about 2 oz.

Right now the plan is to feed him what he wants as he wants it through the night. Tomorrow we'll start giving him full feeds through the tube and see how it goes. If it goes well, we might get to go home.

Keep your fingers crossed.

--Trish

almost time

Tomorrow is the day.

Surgery is at 11. We have to be at the hospital at 9. No food after 2:30am.

I'm nervous but will be glad when it's over.

Robbie and I spent the day playing and snuggling. I took every opportunity to kiss and tickle his tummy. He took every opportunity to play with his new toy.

Keep us in your thoughts and prayers. We need this surgery to work, be as painless as possible and hopefully be the last we see of a hospital (other than doctor appointments) for a long while.

Thanks,

--Trish