Happier baby

Ever since the great tantrum on Dec. 27 where I finally just stayed calm and waited it out (it took about 15-20 minutes), Gabriel's bottle behavior has been much better. We have had minimal or no tantrums since then. His volumes still are about the same, but at least we're not having a major screaming fit every time we try to feed him. We are also thinking that the new formula (Gerber Good Start for those of you keeping track) is agreeing with him just fine. I hope they'll tell me he doesn't need quite so many calories at his next doctor appointment since he has gained a pound in less than a month. His last weigh-in was Saturday at 14lb. 2oz.
We also gave him floor time yesterday and he was having fun rolling up onto his side and working his way across the blanket by pushing his feet. We rolled him to his tummy for some tummy time and I walked away to make a sandwich and so my husband was the only witness to the first unassisted tummy-to-back roll. We tried to see if he could repeat it, but to no avail. I guess I'll just have to wait until next time.

Baby's First Christmas and 8 month birthday

Time for the monthly update! Thomas and I were both kind of having emotional moments in church on Christmas just because the baby is actually HERE. Last year at Christmas is when we announced to the family that we would be adding a new little one to the group and it's been a roller coaster ride ever since. Gabriel's eight month birthday was actually on Christmas day, and it's hard to believe that so much time has gone by already. He spent the day flirting with the choir girls at church and then flirting with Grandma in the afternoon, so by the time presents rolled around, he was zonked.

He has made quite a bit of progress in the past month. We've gone from tummy time being a trial and tribulation to rolling from back to side repeatedly and with a little help he can get to his tummy (and vice versa). He has very good  head support and enjoys sitting up in your lap and looking around. He's able to sit for about 10 minutes at a time in his Bumbo chair before his core muscles lose the fight and he starts swaying in circles. We are now in winter seclusion meaning he doesn't go much of anywhere, but we do manage to get out to non-crowded restaurants on off-peak days and go for walks. He received his Synagis shot earlier in December, so he's moderately protected against the RSV virus, which is the nasty respiratory one.

In terms of feeding, we've had quite the ups and downs. His visit to the GI doctor and dietician at the beginning of December had them wanting us to fatten him up more, so he went back on fortified breastmilk and gained 3/4 lb. and 1.2" in 2-1/2 weeks! Unfortunately, we finally figured out that the increase in spit-up and uncomfortableness that accompanied this change was due to the formula we were using. We're trialing a  new one right now, but the jury is still out. Sometimes I feel like the specialists are so focused on their area of expertise that they miss the baby as a whole. They tell me that I have to get a certain number of calories into this kid per day one way or another, but what I am seeing is uncomfortable baby, spit up everywhere, and he's still gaining weight even with the heavy losses. I'm doing my best, but in the end, I'm going to compromise with what makes him comfortable. He looks great, acts happy and doesn't even look like he started life as a preemie. We are still working through the temper tantrums, and last night we had to wait out a 15 minute tantrum before he would start eating. Extinguishing the bad behavior is hard on us, because we just have to sit and wait it out, but today showed a light at the end of the tunnel --  he took about 35mL at each feed with a minimum of fuss, which is qualifies as a great day given the past two weeks.

Next month, we will be working again with speech and physical therapy to hopefully get him onto spoon-feeding. Grandma Moser even bought him spoons for Christmas... We will also be doing a swallow study to see if we can figure out why bottle feeding is so unsuccessful. He'll have to drink a small amount of barium and have x-rays taken of his mouth and throat. Just another day in the life of Gabriel, I suppose. But for now, I'm just going to let him go back to playing with his toys!

Photos from the past month can be found at http://min.us/mbuYsfTOVzhovx

Kids should wear rubber

Well, there's good news and bad news. The good news is that we seem to have gotten over the hump with the bottle tantrums. Being firm with him got us back to taking about 20mL from the bottle which is much better than the 5mL or nothing we were getting with tantrums. He also had a doctor appointment yesterday and his weigh-in showed a 3/4 lb. increase from the beginning of the month and growth of over an inch in length! The doctor appointment was to have his g-tube button replaced which is a quick in-office procedure that lasts about five minutes. He has to have it replaced every three months, and we will be expected to do it at home once they see us do it once. It really is quite interesting -- it's just this little hole in his tummy, kind of like a piercing, and I can see how it will just close up on it's own when we're done with the tube.

But...and there's always a but...we have had an increase of some pretty massive spit ups. I'm not talking normal baby amounts, I'm talking about half his feed almost every single time we feed him. I called the doctor and they said to put him back on the feeding pump at night and decrease his bottle amounts back to where they were, but this hasn't really helped. I have another call into the doctor to see what to try next, but in the meantime, I have a sneaking suspicion the formula may be at fault. It's a super-rich preemie formula called Neosure, which he had been using in the hospital. However, he hasn't been on this high of a concentration of it since before his g-tube surgery three months ago. Given his growth in the past couple of weeks, I'm not sure he needs so many calories since he made those growth gains while spitting up a bunch of his food. I've talked with a few other preemie moms who had issues with Neosure, so I'm going to try a lesser concentration of it to see if that improves things while I wait for the hospital to call back. We don't think it's reflux (and neither does his therapist) given that he doesn't show any other signs such as discomfort when sleeping flat on his back, continuing discomfort during and after feeds due to residual stomach acid burn feeling, or refluxing even when he isn't eating. We've gotten pretty good at aiming him at the sink while we're waiting for the inevitable spit up, but we're still changing clothes several times a day. The washer and dryer in the apartment are a definite must and my carpet has been inundated with Oxiclean.

But, in other news, he is trying to roll from back to front and does much better with tummy time. He can complete the roll from front to back or back to front with just a little help and likes to spend time on his blanket on the floor goofing off. He spends a lot of time halfway in-between a roll just getting up on his side and then falling back talking all the while. This appears to be great fun. At least he's enjoying the exercise!

Line in the sand

We've had to constantly reassess our expectations of Gabriel. We've gone from thinking he could improve on the bottle to being willing to accept the 40cc average he was taking to quitting the feed once he was showing stress cues. But he's a smart boy. I think he's picked up on this and that's what started the massive tantrums a few days ago. Quite by accident today, mostly because I was frustrated, but still in control, I really held him down and made him stay in position and put the bottle in his mouth. And after I waited out the accompanying tantrum, he did accept it. I praised him a lot and when he wanted to take a break, we played a little. Then we got back to work and went through the cycle all over again. So, next mealtime, I did the same thing on purpose -- made him work and rewarded him with praise and a short play break. When Thomas got home, he tried it and got actual measurable results. Not once did he give us his usual stress cue of falling asleep, and he was quite willing to play between work sessions. We'll see if the experiment continues as well tomorrow or if we have to re-evaluate yet again.

The Big, Bad Bottle

 This kid is putting everything in his mouth: fingers, toys, blankets, pacifier...pretty much anything he can get his little hands on. But, when it comes to a full bottle, uh-uh, no way, forget it. We've had crying, screaming tantrums for the past few days over the bottle. Our current goal is to just get through a bottle introduction without setting off all of the major stress cues. Nevermind actually DRINKING from said bottle. It's like some little switch flipped all the way on sometime around Thursday, and the only time we can get him to take the bottle now is when he's half asleep at 10:30pm. I even tried letting him play with the empty bottle before his breakfast this morning. That was fun, he flipped it around, held on to it, tried to put it in his mouth, but the minute there was actual milk in there, it became something to fuss about. My current theory is that since he doesn't have "control" over this during the feed, it has become a major stress event. Everything else he puts in his mouth he can grab and remove or play with at will. During bottle time, we hold the bottle in place and we hold him in place, too. It may be all about independence. I don't know. His SLP is coming Tuesday, so we can get feeding help then. And he's working hard on sitting up, since that's a prerequisite for spoon feeding. I really hope that spoon feeding will be the magic key that unlocks the door to life without a g-tube. Because, bottle feeding isn't going to get us there.

Sir Talks-a-lot (part II)

The baby babble that greets us every morning. :)

Experiment = success

Last night, we finally got Gabriel up to 140cc per feed. This meant that essentially, he was on 6 feeds a day which allowed us to try him off the feeding pump without having to wake him up in the middle of the night for a meal. So, after a "midnight" snack at 10:30pm, Gabriel was put to bed and he slept all the way until 5:00am as planned! It means a little less sleep and rearranging of sleep schedules for me and Thomas, but getting him off the pump feels like a real step forward.

Perfect baby....except for feeding

Our two therapists, the speech language pathologist (SLP) and the physical therapist (PT) came this week. They were both quite impressed with our little man. He's doing quite a few things right. All that talking and making shapes with his mouth are great things for the precursors to speech. He is very active, waving hands, kicking feet, and pulling his feet to his chest. Toys are becoming much more interesting, he can spend quite a few minutes waving things around and/or staring at them. He has very good head control; it's not completely there, but he can hold it up for awhile on his own. This also means that tummy time is going a little better. Rolling over is just over the horizon. While changing diapers, he manages to almost roll from back to front, and with a little positioning and push from his PT, he did roll from tummy to back, so we're almost there. It's a good thing we're trying to get him off the feeding pump. Imagining him rolling onto his belly while hooked up and dislodging things would keep me up at night.

Bottle feeding has pretty much plateaued. This is both good and bad. It's good because the reason seems to be that his suck reflex has become integrated, meaning it is under conscious control now. This is an important developmental step. It's bad, because it means that now he is CHOOSING to only take the 30mL or so from the bottle. All of us are in agreement that bottle feeding is not a mountain we are going to climb to the top. We're looking forward to spoon feeding in about a month. The SLP said that spoon feeding is like the Promised Land for many kids. She has several patients that would take nothing or almost nothing from the bottle, but took to spoon feeding really well and need either no additional calories or just a quick bolus of Pediasure through the tube. It's very encouraging to hear. So PT and SLP are working together to get him ready for the next adventure. We'll be working even more on his abdominals and sitting up (with help). We'll get a recommended high chair and make sure it will give him enough support that all he has to worry about is what his mouth is doing and not about how hard it is to stay upright. We want to set him up for success in this so he will do well and not get frustrated and do half measure like he does with the bottle.

Doctor updates

Gabriel had two specialist appointments this week: one with a gastroenterology doctor and one with the nephrology doctor.

We made the appointment with the GI doctor because we needed some direction with managing the g-tube and how to know how much to feed Gabriel and what bolus amounts would be appropriate. Since they had never seen him before, I got "the look" when I told them that he was a 22/6 week preemie. He certainly doesn't look it -- I don't think people really believe me. They think we just seriously miscounted our pregnancy weeks. But we didn't. Anyway, even though baby boy is ginormous by preemie standards, they still want him to put on some weight. Apparently, preemies have to get fat and chubby before they'll grow appropriately taller. Gabriel looks good, but his growth trends are starting to plateau instead of continuing to follow the growth curves. They told me I need to feed him more than I have been and gave me the official amount I should be feeding by calorie count. This was nice, because I'd kind of been making it up as we go based on the calculation formula the NICU was using for him. She also helped me figure out how to increase his daily bolus amounts so that we can get Gabriel onto fewer feedings a day and off the feeding pump at night. Today is the last day of his initial increase set, so we could try not using  the pump tonight if we're feeling brave. We are also fortifying all his breastmilk to make it more calorie-dense, so we may end up with a butterball baby by Christmas.

The nephrology doctor was rechecking an issue that they found in the NICU - kidney calcifications. So, in an all-morning appointment, Gabriel first had and ultrasound, and then a meeting with the doctor. While we were in the hospital, the diagnosis was that the calcifications were probably due to long-term use of the steroid medications that were helping him breathe and helping is adrenal glands manage certain hormones. The ultrasound this visit showed the calcifications decreasing, which is good. She said that being a preemie, he still will need to be watched for things like high blood pressure because his body will most likely have not made as many nephrons as a normal person, so high blood pressure would be harder on his kidneys than someone else, and he also would need to not turn into an exclusive carnivore since the high-protein diet would also be hard on him. But overall, he's doing well. I may work with exclusive carnivores, but I don't think my son will turn into one.

Next week, Gabriel finally gets his RSV shot so we can breathe a little easier about cold and flu season and the week after that he will have his g-tube button replaced. This is a quick, in-office procedure where they show us how to do it, because next time we'll be doing it ourselves at home. The button is replaced every three months so we may get more practice at it then we want.

Sir Talks-a-lot

Over the past two days, we've really noticed an increase in Gabriel's baby babble. He talks often and loudly. It's great to see him coming along so well in some areas! I wonder what he'll have to say when he can actually form words? Since the video uploader doesn't seem to like me right now, here's a picture of him talking to us:

You can never start books too early

We are making sure that Gabriel gets a good foundation in the written word. I'm reading him The Hobbit, and Thomas is reading him "The Rime of the Ancient Mariner". We'll get to the Chronicles of Narnia soon. Meanwhile...enjoy his reactions. We especially like the raspberry he blew at "albatross".