Busy week

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:
Development
Gross Motor
Fine Motor

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.

The good:
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!

The bad:

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!


--Trish


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.




Happy Easter!




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.

Babbling

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?

--Trish

Exciting day

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.


--Trish

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