Happy First Birthday!

Gabriel just celebrated his first birthday. He's come such a long way from that teeny tiny child covered in tubes and wires; he's developed into a vocal, playful little boy. His official day-before-birthday weight is 18 lbs., 6 oz. That's miles ahead of the 1 lb., 6.9 oz. we started at!

 We had birthday Skype calls with the out of town grandparents and his younger-older cousin (Heidi was supposed to be born first, but Gabriel stole the show), and yesterday we had a family birthday party at the in-town grandparent's house. There was cake and everything, but since he can't have that yet, Gabriel's favorite part was the tissue paper from the presents.

We have come out of our RSV seclusion and we take Gabriel quite a few places now. Church, stores, other people's houses... It's really nice to relax the hyper-vigilance we've been practicing since the fall. He is quite the social butterfly and is very good at flirting with the ladies. He has one of my co-workers completely smitten and is able to distract the entire church choir with his antics. Being so social also means that he's becoming more attached to us. When we started, he was okay being held, but sometimes you really did have to just go put him down and leave him alone to get him to settle. I think this may be a throwback to the NICU where he spent a lot of alone time because the nurses have several charges and he probably had to learn to self-soothe. Now, he gets upset if you put him down to play and don't get down on the floor to play with him. And he likes being held more and will raise his arms when you go to pick him up. He is still a slippery squirmy little dude -- being held is still playtime, not sleepy/quiet time -- but he seems to enjoy it.

Over this past month, I have been feeding him more and more "real" food. Since we are supposed to keep up with the formula, it means feeding him 7x during the day, but I am trying to show the dieticians that he does best on solid food. And he does. Very rarely does he throw it up -- maybe just a small amount once a week if that. The formula still comes up at least once or twice a day, but since we are on an hour long pump cycle and I've added probiotics into his daily regimen, it has decreased in volume. We bought a magic bullet blender so we can start making our own baby food/blends.

Both his therapists are super proud of him. He's doing crawling precursors (i.e. on hands and knees and rocking) and is good at manipulating baby toys which bodes well for his fine motor development. He will have an official review next week. He is also becoming much more vocal and varied with the sounds he makes. Playing with his "throat" sounds -- growling, yelling -- is his new thing. Yeah, those lungs are going to be just fine.

I've saved the best news for last...over the past several days, I've seen an increase in having him voluntarily take the spoon without trickery involved. Today was especially impressive. I would put the spoon to his mouth, gently hold his hands out of the way and say his name and click my tongue to get his attention, and after a little bit, he OPENED HIS MOUTH, LEANED FORWARD AND TOOK FOOD OFF THE SPOON!!!!!!!!!!!!!!!!!!!! Several times!! I am floored. This is awesome. I hope this behavior keeps going!

For the animal trainers and behaviorists out there, here's some other info. When he took food off the spoon he would gag about half the time. So, I started demonstrating what you are supposed to do with food: holding my mouth closed and saying "mmmmmmmmmmmmm" very loudly. Initially, he would take food into his mouth and hold his mouth open, not knowing what to do with it, so this method eventually helped him figure out how to close his mouth and suckle the food back to be swallowed. Now, even though he closes his mouth, he still gags sometimes like he forgot how to deal with the food. So, I am combining the startle response I use with the dog with the "mmmmmmmmmmmm" to get him to combine all the parts of taking food into his mouth and swallowing together. When the dog does something incorrect, I use a loud "uh-uh" to startle her out of the behavior and get her looking back at me. It works quite well. When I say "uh-uh" now, she usually immediately sits and looks at me like "what did I do?" Anyway, I've been doing this every time the baby gags, followed by "mmmmmmmmmmmm", and, believe it or not, it works! He quits gagging and swallows. Ah, the principles of behavior modification in action.

We have our next GI appointment next week and we'll also be meeting the new pediatrician. I will definitely be talking to the dieticians about moving off formula -- maybe moving onto fortified cow's milk? I don't know, but I do know I will be doing more real food with him, even if it means keeping up with the extra feeds to do it. We've also re-applied for Medicaid, and hopefully they'll take our monthly medical expenses into account, otherwise we make just a little bit too much to re-qualify.

Right now Gabriel is napping and so will no doubt be singing along with the choir during tonight's service. Baby's first Holy Week and Pascha! What better way to celebrate Christ's Resurrection than with His little angel miracle baby.

Time to baby proof...

Last week, Gabriel showed us a new trick. Watch closely at 0:51.


Did you see it?

How about now:

Yeah. This boy is well on his way to cruising the apartment.

Plan B+

Well, there is no magic formula. Alimentum showed no change in Gabriel's tendency to reflux. It got to the point where we called the GI doctor weekend pager and were told to put him back on the pump (which means taking the baby food out of the formula mix) and letting it run for an hour per feed. It feels like three steps backwards. We want to get him to eating three meals a day, not moving toward a continuous daytime drip. So, I modified. Again.
The hour pump helps, in that when he does reflux, not as much comes up, but he was still throwing up at almost every feed. So, I went to the store and got the probiotics. We started them last night, and so far today, everything has stayed down. I'm not calling it a success yet. We need to see if the same trend holds over the next few days.
As for the baby food, I've added it to his separate juice feed, and he's holding that down just fine. And since it's "extra" I can conceivably add as much as I want (up to a cup a day) to his diet. I hope to show them that "real" food works better for him than formula. I don't know if that's the case yet, but from everything I've heard about blenderized diets, most babies do much better once you make the switch.
So, here's to plan B+....and hopefully we won't have to move to plan C-.

Trial and Error

Feeding this baby is a series of "lets try this" and then seeing what happens. Our visit to the GI doctor this week has us discontinuing his medications, but trying some other things to get the barfy baby under control. I was quite happy with our interaction with the doctor this time. While I still think she is a bit "diagnostic test" happy at times, she is also really good in her personal interactions with Gabriel. She's always happy to see him and he smiles and giggles at her; and that's important, too.

Anyway, she was happy to hear prune juice was working for us and we put the barium enema on hold for now. We are also discontinuing the Prilosec since we didn't really see a decrease in the frequency of the vomiting. When I brought up blender diets, she was completely on board. They recognize that kids who are on blenderized diets seem to do better, and seem to want to make it the end goal to transition him over to that kind of diet soon. She would like to get him to the point of solids only during the day and supplementing with a formula night drip overnight.

The dietician, however, wants him to stay on mostly formula until he's a year corrected age -- four months down the road -- to make sure he's getting all the vitamins he needs. I explained that with the amount of reflux we're dealing with, I can't keep him on only formula for that much longer because I can't increase the feed volumes from where they are now. We are compromising with a new formula recipe. We are also trialing a completely new formula as well; he's going to try Similac Alimentum starting tonight. During the day, when I make his formula for the whole day, I will substitute 4oz. of water for a 4oz. jar of veggie or fruit baby food. If he tolerates the solids well, we may be able to increase the amounts. I also asked if probiotics would be something he could try, and she recommended a couple different types.

So, the new plan of action is:
-start new formula and add in baby food during the day
-add probiotics if still throwing up a lot
-if probiotics/new formula aren't working, try apple cider vinegar treatment

We have things to try, and that's a good thing since I don't have to feel like we're just standing on the sidelines watching him throw up.

Today started out a little rough in that he threw up over half his breakfast and his noon meal. It makes me nervous about having stopped the Prilosec. Maybe it was helping? But his afternoon and evening meals he held down with no signs of discomfort, so maybe I'm just oversensitive. I also discovered that formula+baby food clogs the pump, so we're back to manually pushing the food in with a syringe. Not a big deal, but it means we can't walk away and do something else while the baby is being fed.

I hope that we find the right combination for him soon! Oh, and he's getting his third tooth. :)

The Baby Advocate -- choosing the right people for the job

Thomas took Gabriel to see a different pediatrician that had a speciality in pulmonology to look into the persistent on-and-off wheeze we noticed. After an allergy test, and a chest x-ray, the doctor determined that Gabriel has "perhiliar peribronchial thickening" which basically means that there is inflammation where the windpipe splits off into the separate lungs, and there is also some associated congestion. It wasn't something that would have been explained by his cough the past week. So, we are in the process of getting all the necessary equipment to nebulize a lung medication once a day to help reduce the inflammation and hopefully, the wheezing. The doctor also noticed that Gabriel's chest/ribcage is a little wider than usual and his lungs are a little hyperinflated meaning that he isn't necessarily able to push all the air out on an exhale. In my personal, non-medical opinion, I'm guessing that we are seeing the effects of ventilator damage. However, the doctor also said that by the time he's a kid running around, he should have no issues. So, it isn't serious, it's just one more thing to deal with right now.

The upside of this appointment is that we will be switching to this pediatrician as Gabriel's primary care doctor. He seems to be knowledgeable about preemies and their uniqueness and doesn't necessarily think of them just as a smaller baby that needs to do a little catching up. He is also able and willing to answer questions. We feel like our current pediatrician doesn't have a good idea of how to handle any preemie questions we have and doesn't like to share an opinion one way or another. He's more of a, "if you want to try that, it's fine" kind of guy, but we need a little more dialogue and direction than that. The new doctor is also a doctor of osteopathy, meaning that he's a full MD, but can also draw on chiropractic hands-on care experience as well as general medicine.

I also called the GI doctor about Gabriel's increasing problem with constipation. Since he is on full formula, it has gotten a lot worse, even with the medication. It seems obvious to me that the formula is the issue, since the more formula we added to his diet the worse it got. First thing they asked is if I'm giving him any juice or extra water. I said no, we didn't know that we could. This is a little frustrating for me since they seem to have focused so much on shoving caloric formula into the baby that they failed to mention that it was as good idea to put other things into him as well. This is my first baby and he takes nothing orally. I need a little help here! Anyway, they also said that any baby that is having a lot of trouble pooping on his own is a real concern and they want to do a barium enema to check for a not-super-common disease called Hirschsprung's Disease where part (or all) of the colon may have had no nerve development and therefore the baby doesn't have the peristaltic waves to push food through the large intestine and out.

Here's where I get a little upset. In my head, it's easy: more formula = constipation. He has never had bowel issues until we started giving formula, and formula is famous for constipating babies. This disease would have been evident somewhere along the way in his hospital stay, I'm sure, since it would have been congenital. And the easy solution is to try giving more juice/water in addition to his diet, especially prune juice, before jumping to a diagnosis that would require yet another radiographic study, yet they never mentioned trying it in any of our appointments. It took calling a nurse to get the recommendation; the doctor just prescribed medication and sent us to radiography. I have found that we have to be super-advocates for this baby given that he has several doctors who don't necessarily talk to each other, and it seems they all want to do x-ray after x-ray. It's like being a high school student with homework from six different classes where every teacher is convinced their assignment is the most important and you should spend several hours per night on their subject. It's overwhelming. If just one doctor wanted to do the occasional x-ray, that would be fine, but several doctors all ordering them for different things adds up very quickly. I find more direction from preemie parent internet groups than I do from doctor visits, much of the time. Oh, and the prune juice did the trick this morning.

Okay, rant mostly over. One more thing to push: from talking to other preemie parents, I really want to try to get Gabriel on a blenderized diet -- i.e. regular food liquified so it can go through the tube. Getting his tummy used to real food would be a good thing, and would likely help his reflux quite a bit. If his GI system is used to real food, that's half the battle. The other half is getting him to feed himself, of course. So, I hope that I can be assertive enough to really push this at our visit on Monday.

7-11

A week ago (yes, I'm behind in updates again), Gabriel turned 11 months old (7 months adjusted). Since we did the barium study and changed his meds, we are still fighting the reflux. It's hard to tell if it's working, because about two days after we started the Prilosec, Gabriel got another little bug. He had a fever and was occasionally throwing up for one day and he has been sounding a little congested since the day before that until now. The coughing aggravates the reflux, so he's still having multiple daily episodes.
We have also made the transition to full formula starting today. I had decreased my pumping to twice a day, then once a day and I have now not pumped for 48 hours. It's both a relief and little scary for me. I have been giving him breastmilk, at least in part, for 11 months, so it's a change for all of us.
Gabriel will get his last Synagis (RSV preventive) shot on Thursday, which means we have almost made it through cold and flu season with just a few little minor bugs. We have also made him an appointment tomorrow to see a pediatrician who has a specialty in lungs so he can listen and help us determine if the persistent wheeze is something we should be more concerned about. I told Thomas not to be surprised if he orders an x-ray, since you can diagnose asthma from an x-ray.
Otherwise, Gabriel is a happy boy. Almost sitting up, but not quite there. Still not super interested in food, but we're working on it. We have taken to demonstrating what to do once the food is in your mouth. He tends to just keep his mouth open and stick out his tongue which eventually triggers the gag reflex. So, we exaggeratedly close our mouths and hum "mmmmmmmmmmm" at him, and it seems to be working.We probably look like idiots. He is still not crawling, which gives us more time to figure out the child-proofing thing, but his PT is overall happy with his progress. We are going to start taking him back out into the world more by the end of April.

Pictures from this month can be found at: http://min.us/mbn32rhjkRNT9d