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

Surgery update

The surgeon called this morning.

The bad news: Robbie's hiatal hernia is back.
The good news: Robbie's hiatal hernia is back.

This is bad because obviously it changes the surgery. Instead of being a 10 minute outpatient procedure with no stitches, it's a 90 minute inpatient procedure with lots more details.

The doctor said that because Robbie's stomach is attached to his abdomen from the gastrostomy (remember that yesterday this was a good thing) it will be more difficult to work around. He may have to actually detach it, do the hernia repair and then reattach it. He'll try to avoid that but the most important thing is to fix the hernia as well as possible.

He said that it's common for them to recur and particularly because Robbie was so small when they fixed it the first time (less than 4 lbs) there wasn't a lot of tissue to work with. Because he's much larger now, there is much more tissue and he has a far better chance of permanently repairing it.

All of this is good because it certainly explains why Robbie doesn't want to eat. It explains not just his discomfort but the fact that he eats a small amount and stops. What is likely happening is that he eats a bit which causes his stomach to distend upward into his esophogus, which hurts. And he's done. Who can blame the kid?

It's entirely possible that just like last time, he'll wake up from surgery and be starving. Of course, he's much older now and has learned the eating = pain, so he might not. The G tube will go in anyway just in case.

Just like last time, if he does return to eating and growing fantastically, it can always be removed again. (Though I'll probably be far more hesistant to do so right away this time.)

It also means he'll be under anesthesia longer, which of course means I'm more nervous. It's still not anticipated to be a problem, but they will try to get him awake as soon as they can. The surgeon said that if things go easily it may be as quick as an hour but if he has trouble working aroung the gastrostomy, it may even take longer. As he told me last time, "It's not a race. It takes as long as it takes to do it well."

We will be staying overnight. The doctor said that if it got to be about 10pm and we were fed up with the hospital and just couldn't take it a minute more, we could have the nurses call him and he'd discharge us, but he will need to be observed for a while after the surgery because his feedings will be held a while. We'll likely to go ahead and stay the night and go home the next morning. By now we're certainly used to the hospital life.

As always we could use prayers. Pray that the surgery goes smoothly and that the hernia repair is completely successful this time. And pray that this is truly the answer to our eating woes. For the first time in months I feel like we might really have hope that he might be able to eat normally.

The difference last time was profound. I'd love to see that again.

--Trish

Scheduled

Robbie's surgery will be next Tuesday, March 3 at 11:30am.

The surgeon thinks it will be especially easy because he believes his stomach is still attached to the abdomen from having the G tube previously. He said he likely won't even need stitches and will be able to go home the same day.

He doesn't anticipate the lengthy recovery time of last time because Robbie's older and willingly breathes on his own now.

I told him I'd pack a bag just in case and he thought that was a good idea.

He sent us to radiology for a repeat upper GI to make sure his hiatal hernia hadn't recurred. If it has, that would obviously change things a bit, but hopefully it's just a 10 minute procedure with minimal pain.

I'm ready for it to just be done with now. I do feel a little more comfortable now that I've spoken with the surgeon. He comes very, very highly recommended and we had a really great experience with him last time. He even lead us all in prayer just before the surgery. But I won't truly relax until the surgery is over and Robbie is awake and well.

--Trish

Raspberries & G tubes

Robbie is just learning to blow raspberries. what he's really accomplishing is slobbering A LOT. I hope this video uploads bright enough that you can see him doing it.
On the feeding front:
Things haven't progressed well. They've actually regressed. We're back to him taking about an ounce and a half at a feeding. The rest goes in his NG tube.

Life with the NG is not so fun. He's constantly getting ahold of it and yanking. Even I managed to catch it a few days ago and almost rip it out. And putting it in it traumatic.

Our OT is concerned we're doing more harm than good with the NG because it's giving him so many negative feelings. He already cringes when you move towards his nose. Eventually it will get to his mouth, too. So this can't continue.

We had our follow up with the doctor today. We see the surgeon on Wednesday and will schedule the G tube placement from there.

Today's appointment was actually with both the nutritionist and the NP in the GI's office. They both feel that the G tube won't be super long term. Because he took so well to solid food, they think that once he reaches the point where most of his calories can come from solids versus milk, we will be able to get rid of the tube.

They said their plan is that as soon as the tube goes in, we're working on getting it out.

He weight 10 lb 13oz at the office today. I had actually fed him on the way to the doctor, so that was a little heavy. I weighed him on the home scale tonight and he was really 10lb 10.5 oz. That puts him up 11+ oz in 2 1/2 weeks. Considering he only gained 5 ounces in the month preceding that, it's obvious that things are going better. We just have to get the food INTO him.

For now, please pray that the surgery goes smoothly. I'm really nervous about it. He took 3 days to wake up from the last one.

There are many reasons this should go smoother.

-He's almost triple the weight he was then
-the surgery is about 10 minutes versus the 2 1/2 hours previously
-we know he reacts strongly to the anesthesia
-he's having way less done so he'll require way less pain medication afterward.

but I also know anything can happen.

--Trish

Pictures

I've been slacking on pictures lately, so let me catch up with some from the last few weeks.

Lookie! My belly button is back to normal.



It's a yummy finger!



I'm keeping grandpa company..zzzzzzzzzzzzzzz



You talkin' to me?



What do you want now?


Mommy reads me a story every night at bedtime.


How YOU doin'?



I see you!



Logger baby says "You're not funny."



Say whaa....?




An EKG.


My skin doesn't appreciate all the sticky stuff.



Just hangin' out at the hospital.



Look at my chubby feet!



Napping in the sun.



Daddy keeps me company.



A nice lady at the hospital found me a swing!




Even baseball players need a nap.



Back at home in my own swing.



--Trish

Home

We've been back at home since Monday.

The week has been very hectic, sorry for no update.

On Monday morning, our Dr. GI asked if I would reconsider going home and I finally agreed. That day I got a lesson on placing an NG tube and a bunch of medical equipment delivered.

We got home that night at 8.

Robbie, of course, pulled his NG tube out in the car, so I had to put a new one in as soon as we got home. I won't lie- it was awful.

They sent us with a different kind of tube than what I learned on and it was a lot harder than expected. I think I cried more than he did.

The week has gone okay. We seem to have a better day and then a not as great one. Overall, he's eating better, but still not up to where it should be. The doctor said on Monday that she hoped that maybe in 10 days he'd get up to better eating. That was 5 days ago. Let's hope the next 5 days show marked improvement.

--Trish

Day 5

Robbie continues to improve his eating.

Ironically, that is actually keeping us in the hospital.
If he weren't making progress, they would send us home with an NG tube for 2 weeks and if things still didn't improve, they'd schedule surgery for a G tube.

Instead, they're trying to slowly increase his intake volumes to approach a normal level which might mean we get to go home without a tube.

I'm not sure I have full belief it'll happen. I think I'm beaten down my months of food wars, but I would LOVE to be wrong. Either way things have definitely improved.

Last night he took as much as 64cc by mouth (the goal currently being 75) and short of one bad feed today, he's taken 50-55 all day.

I think the plan right now is to leave him at 75 for another day, then try to up him to 90 and go from there.

If we can get him to 90, that leaves enough leeway that if he doesn't take that amount at every feeding, but at some, he can still consume enough calories to thrive.

We had a bit of a scare the other night where his heart rate was very low. He kept setting the alarms off. And it kept coming back "irregular heartbeat."

After a day or so of being dismissed, we finally had a great nurse who listened and could hear the irregularity and took it to the resident pediatrician. Her theory was actually that his NG tube was stimulating his Vagus nerve and causing the irregularity.

It made sense because it would get better if you positioned him a little differently, but I insisted on an EKG anyway. It was normal. *phew*

We've had a good run of nurses the last couple of days which makes for a MUCH more pleasant hospital stay. Our day nurse the last two days, in particular, was lovely. She was very attentive, knowledgable and seemed to love Robbie. What more could a mom ask for?

That being said, I'm truly sick of hospital life. Robbie eats every 3 hours but gets his vitals taken every 4. Of course, it always seems his vitals are due just as he gets to sleep.

Just now I'd finally gotten him settled only to have to get him back up to weigh him, and get all his numbers. I then got him back to sleep and now it's time for him to eat.

I also miss my bed and TiVo and Robbie's toys and swing. The hospital has provided some things and we have brought others for him, but it's not the same as being at home. We'll all be glad to get back home.

Keep us in your prayers so that can happen soon.

Off to feed the kiddo...


--Trish

Day 2

Not much change today.

The blood transfusion has perked him up a bit. He definitely has better color and more energy. He's used that energy to stay awake.

He was up until 2:30 am (amazing the nurses) and then only slept until about 9. Then refused to nap all morning.

He finally collapsed about 2 and took what was essentially a 3 hour nap.

Unfortunately he's not eating any better despite the meds.

Our pediatrician was in the morning for a "social visit" (as she called it) and I asked what the plan was.

Basically they want to give him a day or two of meds to see if there is any improvement.

They had him evaluated by OT today. Then from there we'll decide where to go.

The subject of the G tube came up again.

I have very mixed feelings about that. I know he needs nutrition but the thought of a hole in his side really is hard to be too excited about.

But Dr. P did make me feel a bit better. She gave a good pep talk about how much better it is for him and how much worse things could be.

They may want to do a scope to look at his innards before that as well. (Which would make me more comfortable as well. Let's rule everything else out before we go sticking a plug in him.)

OT came and pretty much said the same thing that our home OT has said. "He has great oral motor skills." Basically he doesn't have any negative oral issues and can eat- he just won't. Something happens where he starts eating, gets going great and then just boom! stops. No one knows why. Everyone assumes that SOMETHING is triggered, but no one knows what the something is.

For now we're really just hanging out and eating every three hours. For the most part he eats about an ounce and they put another ounce into his NG tube. Dr. GI did add a tiny bit of protein rich formula to his breast milk today. No one told me, but I assume that probably relates to the anemia.

Tomorrow OT wants to watch him eat again. He was quite sleepy when they were here today (it was the middle of his 3 hour nap) so they want to see if there are differences when he's awake.

From there, I guess we reevaluate.

Please keep us in your prayers. The best thing that could happen is he just suddenly starts eating.

In the mean time, here are some pictures from yesterday.

My room.


Chillin' in my hospital bed.


Takin' it all in.


Daddy snuggles me.



On Mommy's lap in my fancy hospital gown.




--Trish

Hospitalized again

Well, we're in the hospital.

The new formula didn't work. (He wouldn't eat it.)

When I spoke to the pediatrician, she wanted to consult with the GI doc.

We already had a GI appointment set for Wednesday. Dr. P told us to pack a bag.

I'm glad she warned us because that's what happened.

He only gained 5oz in 28 days. (He should gain that in a week.)

So we've been admitted.

The hospital isn't fun. It's very, very late here so I'm not going to go into too much, but he now has an NG tube (feeding tube up the nose) and an IV.

His labs came back showing that his hemoglobin was very low. He's now in the midst of a blood transfusion.

He's on IV Pepcid. That's the strongest stomach medicine they can give him. Now we just wait and see.

They're asking that he take 2oz every 3 hours. What he won't eat they feed through the tube. So far the most he's taken was about half that.

They said the stomach meds usually take about 24 hours to really kick in, so we hope that tomorrow things improve.

We're not sure how long we'll be here or what else they have in store.

Wish us luck and pray for us.

--Trish

Next step

Talked to our pediatrician today.

I started with "We are NOT okay here."

I pretty much laid it out. He's eating less and less. I used to be able to get him to eat in his sleep but even that is a struggle now. At night he'll eat 15 or 20cc and refuse more, then wake up starving again an hour and a half later, eat another 15 or 20cc and we start over.

I told her he DID gain some weight last week with the aid of the olive oil, but that sometimes now he's not wanting solid food either. (I think it's the olive oil.)


She said that she was getting close to the point of feeling like we needed to do something drastic like admit him to the hospital. I told her that I was desperate and if she felt like that would help us- we'd do it.

She wants to try one more thing. She wants us to try some Nutramigen AA hypoallergenic formula. If that doesn't work, then the next step is that she's admitting him to the hospital for a work up.

She assured me that she IS taking this very seriously and we WILL get to the bottom of it.

Just hearing her say those words lifted a weight. I finally feel heard.

Now I just have to FIND the formula (no one seems to carry it) and give it a try.

Wish us luck.

--Trish

Well, Robbie has finally gained some weight. He broke 10 pounds this week.

Our pediatrician has us adding olive oil to his food and feeding him solids as often as 3 times a day.

The olive oil looks disgusting but so far Robbie seems to tolerate it well. Fats are good for baby's brains, so it's not quite as awful as it sounds.

Unfortunately the feedings are about the same. If I'm really, really lucky I get 2 good bottles a day. The rest vary from almost nothing to an ounce.

The worst at this point is at night. He'll eat an ounce or less and then refuse more. Of course, he's then hungry an hour and a half later and wakes up crying. Takes another half ounce maybe an ounce and we start over again. This doesn't lead to much sleep for me.

He is gaining, so that's something, but it's such a battle to get there and I'm just not sure how long we can live like this.

As much as you hate to wish this on anyone else, it is sometimes good to know we're not alone. One of Robbie's NICU friends is going through the same thing. Lexi's mom made a post describing a feeding that sums it up all too well. Check it out here.

Other than that, he's about the same. Talking more and more, using his hands more and more. Still hates tummy time with all the fire he can muster so he still won't roll over.

If it weren't for the feeding woes, life would be great. Really, he's beautiful and sweet and funny.. he just won't eat. Unfortunately eating is the the most basic thing a baby needs to do so much of our time is spent in frustration in worry instead of playtime and joy.

Please keep praying that things turn around soon.


--Trish

Positive

Food wars continue. I don't even want to talk about it any more.
Suffice it to say that I'm exhausted.

But let's try to be more positive.

New things in Robbie's world:

He's getting better on his tummy. Tummy time is still a very short game because he despises (DESPISES) it, but I've been working on giving him the two minutes he'll tolerate several time a day.

This has helped him with his pushing up. He's always had really great head control, but he never even tries to push up because as soon as you flip him over he starts screaming hysterically. But we're not able to get him over and he'll occasionally even try to push up on his own.

If you put him up on his elbows, he can hold it for several minutes.

He's also getting more and more vocal. I'll upload a video later that you can hear him cooing. You won't be able to see much because it was darkish in the room and they always upload even darker, but you can hear him talking.

His latest thing is that any time something new is in his mouth, he starts talking. A new toy, my hands, his hands, whatever- he gets really vocal. He sometimes does the same thing when he's eating solids.

Which is another thing- solids are going pretty well.

So far he's had rice cereal, avocado and oat cereal. He's not too sure about the avocado. I think the consistency was a little odd for him. But we're not giving up. Avocados have LOTS of calories, so I'm hoping I can get him to love it. The rice cereal is okay but doesn't travel all the way through his system so well. The oat cereal, though- he really likes. And it's helping to keep him regular so it's a double bonus.

We're going to try the avocado again for a few days then I think we might try sweet potatoes.

I'm really focusing on vegetables that have more calories than breastmilk. Anything to give him a boost since he's still not eating. (Oh wait, we're not talking about that.)

Robbie is also falling more in love with his hands every day. Reaching for things, grabbing them- and that best part- putting things in his mouth. He's working on trying to control his paci and on the rare occasion that he does eat a bottle, he wants to have his hands on it so he can "hold" it.

He's also smiling and laughing more and more. Those are my favorite parts. Sometimes when he catches my eye and just beams I'm reminded all over again how incredibly lucky I am. The kid loves me. What more could a mom want?

He's also sleeping great at night. If we could get that issue we're not discussing under control, I have no doubt that he'd sleep through the night. He goes to bed about 11pm every night and sleeps until 9, 10, sometimes 11am.

Napping is still intermittent, but with a 10-12 hour stretch at night, even with getting up to (try to) feed him every 3 hours and pumping, I'm able to get enough sleep to function most days.

And of course, he's as handsome and adorable and precious as ever.

With that- pictures to prove it!

--Trish

I finally decided this Bebe Pod thing isn't so bad after all.



It certainly is a different perspective up here.



You know, I think I really like it!


Daddy doesn't feel good so I'm keeping him company.



Boy, he's demanding. I need a nap.



My daddy is sooooo funny!



I have a new toy. Mommy says eventually my feet will touch the bottom.



It sure does taste good.



And it has cool toys!



Lookie what else I can do!



It sure is hard.



Mommy is trying to feed me this new stuff called "cereal." I'm still a little unsure.




And the "video" that's really just audio.

A new theory

Well, OT just left.

For once she actually got to see Robbie's (not) eating in progress.

At 1:15, he acted like he was STARVING. He'd barely eaten at his 11:00 feeding, so that was entirely likely.
He was wide awake, so I knew he wouldn't eat, but I hoped.

So I gave him a bottle. He sucked on it like a mad man for about a minute and a half. Then he stopped.
He'd taken 10cc. (About 1/3 of an ounce)

That was about the time the OT showed up. I was still sitting with the bottle in the mouth. He gummed at it. And gummed at it. And gummed at it.

She asked if she could try and I passed him over.

For an hour she stimulated his mouth, tried different positions, played with him. She eventually took a break and did his stretches and tried again. He took another 10cc in that time.

He was finally getting drowsy.


I told her that he'd eat now and took over. Sure enough, he sucked down 60 cc (2 oz) in about 10 minutes.)

That's the story of my life. Try to wear him out, try to feed him. Emphasis on TRY.

But at least she got to really see what it's like.

So her theory is now this:
He's SO not oral-averted that he's actually the opposite. She said he's a bottomless pit of oral stimulation need. All he wants is oral stim. So much that all it takes is something in his mouth to make him happy. He can ignore hunger (eating only enough to turn off the hunger) as long as his need for oral stimulus is met.

Now, I'm not 100% sure this isn't all a bunch of mumbo jumbo, but it does make sense. He'll chew/suck on anything- his hands, toys, pacis, my hands- you get the idea. But he won't EAT.

Anyway, she did some vibration stuff on his cheeks. He LOVED that. He just laughed and laughed. So I guess if nothing else, he's having fun. The idea is that we need to try to "fill up" his oral need and then he can focus on something else.

We'll see.

Of course, I also talked to the GI's office twice in the last 2 days. It started as me calling to ask them to call in the script for the Prevacid solutabs (his reflux pain is IMMENSELY improved now- and no side effects from the lactose.) and ended up with me telling them he's still not eating.

It would be funny if it weren't so serious but the GI's office recommended and OT second opinion and the OT recommended a GI second opinion. No one really knows anything.

I'm not sure if I believe anyone can do anything at this point.

At this point my plan is to give the new drugs and new therapies until the end of next week to work. Maybe once he feels okay long enough, he'll have an appetite enough to want to eat. And we'll fill his oral stim "bucket" as best we can and see what happens.

If nothing gets better, I'm going for a GI 2nd opinion. I would like to see about something to stimulate his appetite and see if it helps.

If it doesn't, I'm not sure I have much choice about the G tube. I broke down into tears talking to the OT about it today.

I feel so emotional about it. It feels so drastic. I feel so guilty that I let them put one in in the first place, then guilty that I let them take it out and now it turns out he may need another.

I wonder how it will affect him long term. Will it make his oral issues worse? Will it make his reflux worse? Will he be able to run and jump and play like other kids? Will he always have stomach problems? And of course, there are the risks of surgery in general.

But I worry about not doing it as well. He's just not growing. While being small isn't the worst thing in the world, babies should grow. I worry about his health and his developement.

I broke out the exersaucer yesterday and he really likes it. But his legs are too short for his feet to reach even on the lowest setting and his arms are too short to reach any of the toys.

Right now he's doing well in every other area except this. But it can't be long before other areas start to suffer.

I just hate all of this and want him to get better.

For now, we just keep slugging along.

--Trish

Survival

I apologize for the delay in posting. It's been a very hectic week and this is going to be a long one, so it was hard to get to it.

We've survived our week of appointments. I'll get to them one by one.

Tuesday was OT.

It was frustrating, to be honest. There was a bit of double scheduling drama that involved getting Robbie and myself up hours earlier than normal only to be called and told the appointment was changed back to the afternoon. The reasons were good, but it's hard to be reasonable when you're exhausted.

Then she got here. The original plan was that our OT lady was coming with the head OT lady. Head OT lady couldn't come because of the aforementioned scheduling conflict.

Then when she did come all she wanted to talk about was thickening his feeds. I explained that I used the thickener for about 10 days with some limited success (that coincided with a new med refill which will be discussed later) but he didn't gain any weight at all during those 10 days. The thickener has no calories so it's basically watering down his food by 5% because I add 5ml to every 100ml of food.

She kept telling me to add the thickener after the milk. As though that has anything to do with it. HE DOESN'T FINISH BOTTLES. It's not like I can just feed him 5% more food. Don't I wish!

We basically talked in circles the whole time with her telling me to do something that I told her wasn't working. I switched nipples back to the Dr. Brown's preemie nipples and that seemed to help him control things a little better much the same as the thickener did. And it doesn't compromise calories.

In better news, we discussed his muscle tightness ("high tone") and how much improved his bending is. (Go us! I'm Robbie's personal trainer. We're a team.) and identified a hip thing that the PT back in the NICU pointed out. (His hip is wonky where it makes his toes on his left food point outward. My left leg does the exact same thing.) and what to do about it. He HATES that exercise, btw. He doesn't mind any of the other stuff, but that one upsets him.

She left and I mostly felt like I'd just wasted an hour and a half of my life.

Then came Wednesday.

Off to the pediatrician. Only when I got there (after fighting through rush hour traffic that threatened to turn me into a road-rage news story) I found that it was actually a nurse visit for his remaining vaccinations only. They didn't even weigh him.

I did see Dr. P in the hallway but only long enough for her to coo over his outfit and tell us she didn't want to see us again until his 9 month checkup.

I decided it was okay because the really important visit was the GI specialist on Thursday.

I then spent a day/night of hell with a feverish, cranky, clingy, miserable baby. Vaccines are fun.

Thursday found a more cheerful, less feverish baby and the GI doc visit.

I went to that appointment armed with a number of questions and suggestions.

I arrived at that appointment far earlier than expected so I swung by the NICU to say hello.

I ran into one of my favorite NNPs and one of the lactation consultants in the hallway. They cooed over how good he looks and the LC walked me to the NICU.
She asked about nursing. I was sad to tell her that he doesn't, but proud to tell her I'm still pumping and keeping up with his needs. (Easy to do when the kid doesn't eat, but let's not go there.) She was full of praise, which was nice.

A few of the nurses popped out to say hello and make eyes at Robbie. He made eyes back. He even smiled a few times and laughed once. As much as I do not miss living there, it was nice to see friendly faces.

Robbie looked into the NICU (we were out in the hallway) with a curious look. I wish I knew what he was thinking.

Then we were off to the appointment.

I have very mixed feelings about how it went.

I'll take my concerns point by point.

1) I wanted to switch from Prevacid suspension to solutabs (or some other form)

The suspension is very volatile and we always experienced a bit of a honeymoon period right after a prescription is filled. Then it tapers off. It's clear that the drug is breaking down.
She completely agreed with that and gave me some samples of the solutabs to try - with instructions to call on Monday. If things are improved, she'll call in the script. If not- we'll completely change drugs, likely to Nexium.

1a) The solutabs use lactose as a binder and I was mildy concerned about that because of the theory that he doesn't tolerate dairy well.

She said we'd try it and see what happened.

1b) I asked about said dairy and if she felt it was necessary for me to continue to limit my dairy intake.

She said that we'd use the solutabs as a test. If by Monday things were going well, I could slowly add dairy back to my diet starting with cheese and yogurt.
Let me just say chhhhhhhhhhhhheeeeeeeesssssssse and yoooooooooooooogurt.
I don't really even like yogurt but right before I cut dairy out, I became addicted to the fat free vanilla Activia in a smoothie. Yum!

2) I asked about some sort of motility agent.

In babies with reflux and in babies with fundos, gastroparesis (slowing/stopping of some of the movement in the gut) is common. I thought perhaps if we can speed up his digestion that would help him not puke so much and make him hungrier.
I specifically asked about Reglan (yucky side effects) or Domperidone.

She shook her head. She doesn't think that's necessary at all. She said that IF we did that, she'd use a 3rd drug (I forget the name now) that would both speed things up and stimulate appetite, but it comes with a side effect of extreme drowsiness which obligates him to eat larger volumes when he's awake which isn't ideal.

I was a little annoyed at being dismissed w/o much of a discussion about the issue.

3) The non eating.

She mostly just nodded. In that "yes, that's what reflux babies do" way. I understand she sees this every day. But for me, this is MY kid.
I explained that he only eats when he's asleep and that I'm feeding him an average of 12 times a day to even get close to a reasonable amount of food in him.
She allowed that was a lot, but didn't comment further.

The real problem here is that he had gained 19oz in the 35 days since we'd been there. She finds that acceptable. Not ideal, of course, but as they've told me before- all they see are babies with stomach problems. They're used to sub-par weight gain.

The problem is that I know that he actually gained 17 oz in 21 of those days and has only gained 2 in the last 14. I'm concerned about the current trend continuing.

She pulled up his growth chart and said he's still got plenty of time to catch up (they want him caught up by age 2) and he was on his own growth curve so he was fine.

3a) I mentioned that the pediatrician had mentioned a G tube at one point and she just shook her head but didn't say much.

4) I asked if she thinks the fundo is causing some of his trouble with the volume intake.

She said no.
I think she's wrong. How can tying down part of a person's stomach NOT affect how it stretches?

5) I asked how much food he needs to protect his brain development.

This one made me cry. I've been so worried because he's already at a disadvantage in so many ways because he was so early.
Is my resistance to a G tube causing him more trouble? Am I risking his health further?

I was relieved at the answer. 100ml/kg.
At this stage that's 433ml/day. His worst days, he's eating just over 500ml. Relief. But at least I can keep that as a measure in my mind that if he's not hitting, I need to insist on seeing someone.

I should add that she looked at me like I was NUTS when I asked the question. I told her several times that I'm an anal retentive mother. She was warned.
I even made her write it down for me.

6) I asked her about the OT's beloved thickener.

She agreed that a non calorie thickener is probably not ideal. She said that if I want to thicken she'd recommend Enfamil AR instead.
I do resist that because he has SUCH a history of not tolerating formula that I hate to add anything in.
The other problem is that formula doesn't last.
Right now if he doesn't finish a bottle, I can save it for the next feeding. (Breast milk keeps well. It has great antibacterial properties.) but if it is mixed with formula, once he starts a bottle, it's only good for an hour. Which would mean pouring a lot of breast milk down the drain.
I'm currently producing about 22oz/day. He SHOULD be eating about 21oz/day. If he eats like he should, that doesn't leave much room for waste.

Plus he's proven that IF he will eat, he will gain on plain breast milk. (I won't even get into the latest information about melamine in formula.)


She wants to see us again in a month.

I left with the one thing I really wanted- a change in drugs. But I also didn't really feel heard. She did a lot of nodding. "Yeah, that's normal for a reflux baby." But I don't feel like she really got that he's not doing well.

In the end I decided to give the new Prevacid time to work and to go from there.

I gave him the first solutab yesterday afternoon. Since then we haven't had any extended post-meal screaming episodes.

He even managed to his his food goal today. He's still pukey (I started him on avocadoes yesterday. Green puke is.....interesting.) but nothing is going to stop that. It's just about managing his pain.

The solutabs are a little bit of an annoyance because I have to dissolve them in water in a syringe. It's awkward and I'm worried about getting every drop into him. But anything that works is worth it to me.

(As an aside she told me just to put it in his mouth. Yeah-he swallowed it whole. I talked to a pharmacist friend and got better info.)


I'm really praying that this continues to be successful and as the days go on his stomach will feel better and better and his appetite will return and he will eat. And grow.

He's been stuck at 9lb 9oz for more than 2 weeks now. We're shootin' for 10 pounds.

Please pray for us!

--Trish

Catching Up

Well, let me see if I can catch every one up.

I apologize for the delay in updates. For some reason or other, I seem to have a lack of free time these days!

Robbie is now about 9 1/2 pounds. (I bought a baby scale for home.) After a really bad month of weight gain, he had a really good one and was just over 9 pounds at his last doctor's appointment.

Unfortunately, things have gone downhill in the last couple of weeks. He just doesn't want to eat. I can only get him to eat when he's really drowsy or downright asleep.

I've talked to doctors, therapists and a ton of other parents of preemies. It's not uncommon but no one can seem to fix it.

I've spent an embarrassing amount of money on different types of bottles trying to find one that would make him want to eat again but nothing seems to work.

The doctor brought up putting a G tube back in. (That's the tube that goes in through the wall in his stomach to feed him. He had one for 6 weeks but he was eating so well at that time that it was taken out as soon as it was safe to do so.)

I really, really, really don't want to do that.

Robbie didn't exactly take surgery well last time (you might remember that it took him 3 days to come out of anesthesia) and the G tube was really a pain in the butt to maintain. It leaked almost constantly and had to be adjusted frequently.

At this point our plan is talk to the GI specialist and the pediatrician this week and see what can be done. I'm fairly convinced that this is all a result of stomach/gastic pain. I'm not sure if it's the reflux or what exactly but he just doesn't seem comfortable.

He's gone back to crying anywhere from a half hour to an hour after nearly every meal (he'll wake up crying in pain.) It's absolutely heart wrenching. All you can do is pat him until it passes.

So I think it's time for new meds and maybe some more tests to see what is going on. I hate to put him through any more, but this can't continue.

In better news, he has started on solids this past week. The doctor encouraged us to start sooner than later hoping that he'd love food and would eat it even when he won't take a bottle.

He seems to like it. He hasn't QUITE figured out how to get it from the front of his mouth to the back. He's only 4 months adjusted age, so he's still fairly young to do so. But with enough gumming and a little help from mom he's eating about a half ounce at a time. I'm planning to try oat cereal next and then move on to vegetables.

Other than the horrible stomach problems, he's really doing well. He's really learning to use his hands well. The animals on his play mat have been taking regular beatings. He's starting to figure out how to hold his pacifier in his mouth and definitely likes to suck on his hands.

He's becoming more and more verbal. I've caught him "talking to" his swing, his toys and he definitely yells when he's angry. Not cries- YELLS. I'm afraid he might have inherited my temper.

We're now able to play more as well.

The only thing eluding us from his 4 month milestones is being able to roll over from his stomach to his back. That was one is challenging because his stomach hurts all the time, so it's hard to do a lot of tummy time. But it's something we'll be working with our therapists on in the coming weeks.

His pediatrician says he CAN roll over (at his last apppointment she was able to get him up on his arms and he flung himself backwards) but I don't think it counts if it's just an angry accident.

I'm really hoping that his stomach issues improve dramatically in the next few weeks. A lot of babies do improve around the 4 month mark (which he hit today!) Hopefully with some new meds and therapies we can beat this w/o another surgery.

We appreciate any prayers, good thoughts or sacrifices to the Gods that anyone wants to make. We need less stomach problems and more weight gain.

More pictures coming soon!

--Trish