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".

New things

We've had a lot of changes this week: Gabriel finally had his first official Birth to Three therapist visits, I went back to work, and he had his first day without either one of us taking care of him.

B-3 sent both a speech therapist and a physical therapist to visit with Gabriel, and now we have homework. They'll visit about once a week for now and hopefully we'll make some progress. The feeding therapy visit was the most interesting. It seems that Gabriel is "self limiting", meaning he has the ability to take more food from the bottle, but he's choosing not to for some reason. So, we are changing our goals. Previously, we were focusing on volume, now we're focusing on attitude. "Feeding time is fun time" is our new motto, and so if Gabriel is showing us stress cues such as falling asleep or rejecting the bottle, he gets a little break and then we try again. We aren't pushing as hard, so if we feel he's done for the session, even if it's only been 5-10 minutes, then we're done. During his feeding tube time, we are making sure he's getting in a lot of pacifier time and also dipping the pacifier in breastmilk repeatedly so he can make the association of yummy milk = full stomach, not syringe = full stomach. Falling asleep may sound like a weird stress cue, but his behavior is certainly consistent with using the tactic to avoid working. He'll fall asleep almost as soon as you start with the bottle, but if you put him down, he wakes back up and wants to be social. He is also almost always very social during feeding tube time, so he's not acutally tired or cranky, he just doesn't want to work on the bottle.

On Wednesday, Gabriel had his very first babysitter. She's still speaking to us and is coming back next week, so I guess he didn't give her too much trouble. I definitely needed the time away, and going back to work was great. I came home, and I was tired, but I felt so much better for having been able to get out of the house for awhile and do something else I enjoyed. Playing with tiger cubs will do that for you. :) We promised ourselves that we wouldn't be helicopter parents and call to check in on Gabriel every few hours. We were good. Neither of us called -- we knew our babysitter would call us if anything happened.

After having two days away, spending the whole day as stay-at-home mommy was hard to get back into. Feeding Gabriel takes a lot of energy. Each session is about an hour long by the time we get through everything, and then I still have to use the breast pump which is another 30 minutes. As a result, several things fall off the wagon. Unfortunately, breastfeeding is one of them. Getting the timing right -- having him hungry and having had enough time pass since my last pumping session is difficult. Plus, he doesn't take much in a session, it's just kind of for mommy-son time at this point, so it adds to the already marathon feeding session. He's never going to be an exclusively breastfeeding baby. I'm looking forward to January when we may be able to start introducing solids and hopefully he'll like that enough to take in his required calories all by himself. The other things that fall by the wayside are the extra baby playtime things. He doesn't get as much tummy time as he should, since I need him to be awake and not having just had a full meal. It's timing again. And there are many other things we should be working on to reach those developmental milestones, but it feels that there just aren't enough hours in the day to do everything. We want to give him the best chance we can to catch up developmentally, but being the all-around super parent just isn't possible. Since feeding is his most pressing issue, we spend most of our time and energy overcoming that hurdle.

However, we do have happy points: Gabriel makes quite the range of sounds and we are able to identify little baby laugh. He smiles quite a bit and loves to look at your face. His abdominal muscles are improving. If you put him on his back, he will raised both legs all the way up over and over without arching his back. It looks like quite the workout. I don't think I could do that half so easily as he seems to. He is also getting quite active with his hands; holding onto toys and looking at them intently and he has even managed to start sucking his thumb.

First Thanksgiving and 7 month birthday

We had much to be thankful for this past Thursday -- it was Gabriel's first Thanksgiving. Except for a minor cold, he is a healthy happy little boy. You would never know he spent his first 5 months in the hospital. He met all his Moser cousins and family via Skype and the next night he spent with his Ruthford family. Greatgrandma Edna held him for a large chunk of the evening and his aunt and two uncles were able to spend time with him, too. Grandma Jane and Grandpa Charles were very happy to see him and Grandma Jane took LOTS of pictures.

Just yesterday, he officially turned 7 months old. His adjusted age (the age he would be if he hadn't been premature) is now 3 months old. We've definitely seen some new things develop over the past month, not the least of which is that he is now wearing 6-month clothing. It's a little big, but the 3-month sizes were getting on toward the small side of "just right", so we made the switch. He is 12 lbs. 10 oz. and 23.5".

We are seeing quite a few smiles, he is VERY social, and we're starting to identify his little laugh as well. He still struggles with eating, and we haven't really seen significant progress. We have had to switch back to the Dr. Brown's bottle he was using the hospital since he seems to be thoroughly rejecting the easy bottle he has been using since leaving Swedish. And yes, he likes his milk nice and warm. Tomorrow he starts with his new feeding therapist and a new physical therapist. By January, I'm hoping that his pediatrician/dietician will approve starting solids to see if he can get his calories that way.

Another new change is that I am coming off maternity leave and starting work again tomorrow. This means he now gets a "Daddy day" on Tuesdays and a babysitter for the first three Wednesdays until my schedule switches to Saturdays. It will be nice to have a break in the week and be able to take care of all my zoo animals again.

Gabriel did develop his first cold this week -- we're on day six if it right now. We saw the doctor yesterday since it's his first respiratory illness since being home. It's uncomfortable for him, but the doctor said he should get over just fine on his own. For the most part, he doesn't act too sick, but definitely has the congested cough. It's nice to know his lungs are as healthy as they seem to be, even as he's sitting here crying at me because he just started coughing. He has the air to cry... But we will be starting his winter sit-in and stop taking him to church on Sundays. At least we can still do outside walks.

Here's hoping (and praying) that tomorrow he will start improving and get over this first of many colds to come.

Tweaks

For the past two days, Gabriel has been really fighting the bottle feeding. It's been very frustrating for all of us. So, today we gave him an "ad-lib" day meaning that we feed him either when he cries or 3 hours pass -- whichever comes first, and he only gets what he takes from the bottle. He gets nothing through the tube. The thought is that if we make him hungry enough, he'll drink from the bottle. Normally, we do get a little bit of a good response to this tactic......but not today. It was going worse than usual. So, we started playing with things. We have three separate bottle options we can use for him, so we tried them all. Then we started playing with milk temperature. The combination of a Dr. Brown's bottle with preemie nipple and warmer than average milk got the best result. Of course, this was also the last thing we tried so it may be that by the end of the day he was hungry enough to put up with us. We don't know. But it's worth trying tomorrow. I'm really hoping Birth to Three gets back to us soon (we're just working our way through the red tape necessary to get him scheduled with a therapist) so we can get some fresh eyes and more experience working on the problem again. When I worked up all the totals, he has been doing worse this whole past week, and we didn't lose ground today, but we didn't gain any either.

Helping hands and DuckTales

Gabriel's new trick is to be more involved in his bottle time. He has started to take his free hand (we feed him on his side, so one hand is usually under him) and push/grab/paw at the bottle. The feeding therapist told us this is a good thing since it is the precursor to the behavior of eventually holding the bottle himself. Therefore, we let him do it. But just like your two-year-old wanting to "help" with the dishes....it isn't that helpful. But it is good to see him developing new, corrected age appropriate behaviors.

His other trick is to push off with his feet when he's being held. This led to Thomas naming the behavior "playing launchpad" and now all I can think of is Launchpad McQuack. So, I guess he earned himself a new nickname. He is quite strong and can get himself into some pretty awkward positions for both him and us doing this. Hence the appropriateness of the nickname. Launchpad wasn't exactly known for his precision flying...

In other news, we got the results from his therapy evaluation last week. Most of his behaviors are appropriate for a 2-month old which is right around his corrected age. This means he's on track developmentally, he is just overall weak in the muscular developmental area which was expected. He will have both physical and feeding/speech therapy, and if we can strengthen his muscles, that should improve his feeding behavior as well. The one area where he is tracking closer to his chronological age of 6-months is social skills. Those the cute baby smiles are right on target. :)

Sleepy Buddy

Yesterday was a super sleepy day. Gabriel slept from about 10am until 6pm, and he still slept through this past night as well. I'm guessing those shots on Tuesday really got to him since he was awake all day Wednesday and then sleepy all day yesterday. Unfortunately, this meant that his feeding ability pretty  much tanked. We were back down to 20cc and 26cc for two of his four feeds (we offer 110cc each time). Although, the middle of the day feed was a little interesting. He was pretty much out, but he still latched on to his bottle absolutely perfectly and took down 50cc in the 20 min. I gave him to eat. I could tell that it was a super-coordinated session, and had he been awake, he probably would have done something in the 80-90cc range. So, there's hope, I guess. He's awake and playing this morning, and hopefully he'll be ready to eat in a half hour when I have all his stuff together...

Ouchie!

Today, Gabriel had his 6 month vaccinations. He had his first two sets at the hospital, so we were never around for the actual event. For those of you who may not know he cries now...let me tell you, he has quite a set of lungs on him if given the proper motivation! Even the Iron Man bandaids didn't make it all better. I suppose he's probably too young to care about such things yet. I thought for sure he wouldn't do any bottle feeding for me after that, but the magic feeding fairy apparently visited for his lunchtime and he took down 69cc in about 10 minutes. She proves to be elusive, though, as the next two feeds were quite mediocre, but at least he had one good one today. Maybe it was the tylenol, who knows?

First month at home

Gabriel came home from the hospital a day before his 5 month birthday. You can read about his hospital days on his CaringBridge journal.

Gabriel has been home from the hospital for a little over a month now. He just had his 6 month birthday, but in developmental time, he is only two months old. We have seen a lot of changes in him in just this past month. He has started smiling quite a bit; we noticed the "real" smiles right around his Chrismation in October. He is also very active and social in the mornings. He enjoys kicking in his bouncy chair and waving his arms around, which is much more activity than he was doing in his hospital crib. He has grown from over 10 lbs. to over 12 lbs. and has gained an inch or two in length as well. That's a long way from his birth weight of 1 lb. 6.9 oz. and 12.5"! He currently trends just below the 50th percentile on the WHO growth curves, and we're watching him closely.

His current challenge is still his eating ability. He came home with a gastrostomy button so that we can get food directly into his stomach if he is unable to take it all by mouth, and we do this at every feeding still. He is using a super-easy bottle called the Habermann that lets him get milk just by compressing the nipple. Of course, if he sucks, he gets a lot more! His volumes have slowly gone up. At the hospital, we would see days where he would take nothing at several feedings in a row or only take 20mL or less. Now, he does eat at every attempt (we feed him on a schedule four times during the day) and his minimums are around 30mL, so he is improving, but slowly. He gets his nighttime milk via a feeding pump plugged into the gastrostomy button, so he sleeps through the night. We didn't want to fight with trying to wake him up at feeding times overnight, since that didn't work so well in the hospital. Let him (and us) sleep! Every once in awhile he goes into what we call "vacuum pump" mode where he can take down over half his bottle in less than 10 minutes. We see this behavior once or twice a week, but it seems to maybe be happening a little more often than before. It's still a very slow process though. He has been seeing his hospital occupational therapist since discharge, but tomorrow, he will be evaluated by the local Birth to Three program who will hopefully keep working with him on bottle feeding as well as muscle development.

We are very happy to have him home. It's so nice to not worry about getting through downtown Seattle traffic every day and having to make it to the hospital for his care times. We set the schedule. I'm slowly adjusting to being a stay-at-home mom for now. It's quite exhausting, especially emotionally, but I'm planning on returning to my two-day-a-week job at the zoo in about a month so I can have some away time in a job I enjoy. Every mommy needs some mommy-time, right?

We will be posting some short Gabriel updates, some long ones, but at the very least a monthly update for those that want to keep following his progress.