Synagis (Round 2)

Yesterday, we had a packed morning. Grandpa came in the morning. Then, Tara visited. We warned her ahead of time that Henry, Jeff, and I had colds, but she said that Henry was her last appointment before a couple weeks of vacation, so she'd chance getting sick. She wouldn't have taken the chance if she had other DDD kids to visit. Tara was very impressed with Henry. She said that Henry is the "most motivated" baby that she's ever worked with and that he has a lot of "want" in him. He looks like he wants to crawl (and walk for matter). He showed Tara how he can transfer objects from one hand to the other. He was fascinated by a red ring that he was holding and was staring at it and his hands during her visit.

Grammy came in the afternoon. I headed to school for a meeting with my TA for spring and also had to fill out some paper work. While I was gone, Henry was trying to hold the bottle on his own and apparently got annoyed at Grammy for holding onto it while he was. Jeff weighed him at 14 lbs 4.5 ozs.

Jeff and I took Henry for a walk before sundown. We ran into Swanee and Evonne. They got to admire Henry in his snowman suit.

It was a nice evening at home. Jeff went to Costco with my parents. Henry ate, played, ate, played, etc. I don't think that he went to bed until 11PM or so. I think that he's becoming a night owl. Jeff and I stayed up getting some things ready for Christmas.

This morning, we slept past the alarm and didn't get up until 7:40AM! This was a problem, because we had a Synagis appointment across town at 8:30AM. Somehow, we managed to make it across town by 8:35AM. The office staff was still setting things up for the day. The nurse weighed Henry at 14 lbs 6 ozs. Henry got his shot. He cried for about a minute. It is a more painful shot than the other ones. It contains quite a bit of fluid in comparison to typical vaccines.







On our way back home, we stopped by UMC to pick up some breast milk fortifier that Dr. Tsai had acquired for us and to drop off some holiday cards. We then swung by my work, so that I could grade a retake of an exam (long story). While I was there, I told Nancy, Ellen, and Carey (department staff) that Henry was down in the car with Jeff. So they went down stairs and got a peak at Henry through the window. It was fun being able to show him off. He really is adorable. Ellen said that seeing Henry made her holiday season.

We popped into Lovin' Spoonfuls (a vegan restaurant) for a quick breakfast. We felt safe going there, because it isn't crowded for breakfast. Except for one couple in a corner, we had the whole restaurant to our selves. Henry enjoyed looking at the lights and objects in the restaurant. I wish that we could take him out more. He really likes to observe new things, and I think that our living room is boring him.

When we got home, we changed his outfit and weighed him to see what the difference between the scales was. We weighed him at 14 lbs 5.5 ozs. Not much difference.

Grandpa just arrived. That's about it for now.

Henry Has a Cold

The past few days have been a bit of a blur.

Henry's Weight
Monday: 14 lbs 6.5 ozs
Tuesday: 14 lbs 6 ozs (doctor's office)
Wednesday: 14 lbs 6 ozs

Can't remember much about Monday day. On Monday night, we noticed that Henry was definitely coming down with a cold. He was very congested.

Henry woke up around 4AM. He was upset. In fact, while I was getting him a bottle, Jeff was watching him in his crib. Henry rolled over back to front and front to back, because he was so upset.

On Tuesday morning, I called the doctor's office. They said to bring him in. Dr. Bianchi listened to his chest. His lungs sounded OK. His ears were OK too. His pulse-ox was 93%. It's just a matter of monitoring Henry. Luckily, the cold that we have had doesn't have croup symptoms (never Jeff nor I have become hoarse). Fingers crossed. This will just be a congestion cold, and it hopefully won't travel into his lungs. Given that he is sick, we've decided to hold off on the flu booster until next week or the week after. Jeff called the secondary pulmonologist today about the Synagis shot scheduled for Friday; they said to bring him in, even if he has cold symptoms. Jeff took off Tuesday from work. I had to go into school Monday and Tuesday afternoons for a conference planning committee that I'm on. On Tuesday night, Grandma and Grandpa came over and brought dinner. Henry slept a good part of the time.

Today, I had a nice morning with Henry. Jeff fed him before taking the dogs on a walk. He woke me before he left. He said that Henry was sleepy. As soon as Jeff left the room, Henry started to make noises. I brought him to bed with me and propped him up on a pillow, which I figured would make him more comfortable because of his cold drainage. We ended up taking a nap together for over an hour.

Grandma had arrived while we were napping. She took care of Henry for a few hours once we got up. Grandpa came in the afternoon. He went on a mid-day walk with me, Henry, and the dogs. Henry got some good naps in during the day. This evening, Henry slept, watched basketball, and had a bath. He is still congested. The congestion is annoying him. At one point in the evening, Henry was eating/chewing on his bottle. I could swear that I heard him say something that sounded like "I love you" to Jeff.

Rolling Over

This weekend Henry has been trying to roll over from back to front. He gets his legs and hips turned over but the problem is getting the arm through. I'm sure he'll get it soon. Grandma has pointed out that once he gets turned over onto his stomach we should expect some crying, because we know he doesn't like being on his stomach for tummy time.

Yesterday morning, I was able to spend a significant amount of time with Henry. Kate was feeling sick and slept in, so it was just the boys. We had a great time. Kate came out to find Henry plopped over face first in my lap. She questioned why Henry was on his face? He had become very wiggly and so I let him sort of crawl around and reposition himself on my lap and he eventually ended up the way he was. I explained to her that he had to figure things out for himself. She laughed at my male parenting style.

I'm still sick at this point but getting better. Kate has felt like something was coming on a few times, but it hasn't blossomed into a full cold yet. Hopefully it won't. Henry has had some sneezing but nothing more yet. I really hope this one passes him by.

Yesterday evening and today, Henry visited his grandparents. I had to work in the morning and ran late, as usual, and so we didn't make it there until the afternoon. We were just in time to watch the Wildcats beat up on Fresno State and then see the Eagles beat the Cowboys. A good sports day.

Henry spends much of his time at his grandparents on their jungle mat. It has lights and music and animals he can grab and look at. He spends long stretches on it and really enjoys it. He seems to be becoming a bit more independent, wanting to spend time doing other things besides being held. At home, he is now spending more time on a mat we have rather than lying in his bassinet or wanting to be held. Guess we need to enjoy snuggle time with him before he outgrows it. I think we still have a while before that happens.

Today, he was 14lbs 7ozs. That is his best gain in a while. However, he didn't eat much at all today, so tomorrow is likely to not be so good. I think we are going to take him off the Polycose Powder that Dr. Hassan, his GI doctor, prescribed. It is a sugar that is supposed to help with regularity. We haven't seen any difference in his output, and we believe it might actually be causing him some discomfort.

We went for a walk with his grandma and grandpa tonight along with our dogs and their dogs. It was quite a gaggle, 4 adults, 1 baby in a stroller, and 4 dogs. I think we are going to start having to take him out earlier for his evening walk. He seems to want to take a nap around 5pm every day, which is his typical walk time. There was a beautiful sunset, which isn't uncommon here in AZ. We got a good picture of Kate and Henry.

This coming week he is due for a flu shot and Synagis shot. We might put off the flu shot if he comes down with the cold I have because the flu shot really wiped him out for a few days last time.

Henry's Doing Great

We had a fantastic Friday. Grandpa Kenski visited Henry in the morning. He stayed until about 1PM when we had a visit from nutritionist Ellen Duperret. Ellen was recommended by my parents' friend Wayne, a prominent doctor in Tucson. As it turned out, Ellen works with DDD (Division of Developmental Disabilities), so she was able to consult on Henry's case.

Ellen had called on Thursday to set up an appointment. She asked if we could call Henry's doctor to send over his weight, length, and head circumference information. We set up an appointment for yesterday afternoon. I had called Dr. Bianchi's office about the growth information and left a message. I had suspected that it wouldn't get to Ellen in time, so I sent her information from our records (I record just about everything). When she visited yesterday, she had plotted Henry's growth information on a growth chart made specifically for very low birth weight (VLBW) boys, which means baby boys who were born under 1500 grams (approximately 3 lbs 4.8 ozs) and born at 37 weeks or less gestation. We have at times plotted Henry on the preemie charts, but the preemie charts include all preemies not restricted to VLBW babies. Ellen weighed Henry on her scale at 14 lbs 5 ozs. His length was 60 cms (23.6 inches). His head circumference was 41.5 cm (16.3 inches).

On the VLBW boy preemie charts, Henry is doing very, very well. His weight is in the 75th percentile, his length is in the 50th percentile, and his head circumference is in the 50th percentile. In short, he is growing well. Not only has he placed well, but more importantly, his growth trajectories are following a nice pattern. His length pattern has actually gotten a little steeper since leaving the NICU, suggesting that he is making progress on his length. One of the things that we have read and heard is that in some ways, the growth trajectories of a child are more important than where they actually place on a given scale. She plotted his weight and length on a "Weight-for-Length" scale. He is actually in the 90th percentile for that...suggesting that he's actually a little chubby for a preemie. We think that things will sort themselves out, now that he's sleeping more and getting longer.

The primary reason why I wanted a consult with a nutritionist is that I have been concerned about how my diet has impacted Henry (and me). We were told at the Wilmot Developmental Clinic that I needed to being eating 80 grams of protein a day. Mind you, the average non-pregnant adult needs approximately 40 grams. When Henry was diagnosed with the dairy and soy protein allergies, this made it very hard on my diet. Hitting 80 grams of protein is difficult; hitting it when you don't eat dairy or soy and are a vegetarian is even harder. I have eaten a lot of nuts and seeds, beans, rice, corn, and vegan brown rice powder supplements to make it to the target of 80 grams per day. And, I do eat chicken on occasion for Henry. Now that Henry has fewer problems with dairy and soy, I have incorporated some dairy and soy back into my diet. But to reach 80 grams of protein essentially means that I have to eat A LOT more than my body needs in terms of calories and fat. Seeds and nuts are fatty. No way around that. Consequently, I'm getting fat. Now, I'm not a vain person, so I really don't care how it has impacted my physical appearance. And, I'll do just about anything for my son. I gained a lot of weight during pregnancy. Lost about 20 lbs of it. But ever since I started trying to eat 80 grams per day, I have been gaining weight. And, I don't know how I will be able to keep up with an active Henry with the extra padding weighing me down. It is so much work trying to eat 80 grams of protein per day...I really hate eating this much. When I have not made the 80 grams/day benchmark, I feel so terribly guilty.

According to Ellen, I actually don't need to be eating that much. Two possible approaches. The first approach says that a lactating woman needs to eat 0.8 grams of protein per 1 kg per day. Under this calculation, 80 grams per day is appropriate for a woman weighing 220 lbs!!! OK. I admit I need to lose weight, but I am no where near weighing 220 lbs!!! No wonder I've been gaining weight. I'm eating like a Chicago Bear (move over Refrigerator Perry). The second approach says that a lactating woman needs to eat 62 grams if her child is 6 months or older. I don't think this approach takes into account a woman who has been pumping for over 7.5 months because her baby was born early, although this was the number that Ellen said I could go by. I peaked at her table, and it looked like the suggested grams was 65 grams for a lactating woman who has a child who is under 6 months. I'm assuming that Henry's dietary needs match what is appropriate for his adjusted age. Regardless of the approach, the bottom line is that I don't need to eat nearly much as I have been!!! I can reduce my dietary intake by about 20%, and I am ecstatic about this!!! I'm going with approach two, because it is the conservative thing to do (eating more protein than I would if I used approach one). I am also overjoyed, because it means that even when I wasn't hitting the 80 gram mark, Henry was getting the protein he needed.

After Ellen left, Henry's DDD developmental specialist Tara came by for her weekly visit. Henry did some push-ups for her. He was getting pretty far up using his arms. She was very impressed. She said that she knows that he may have some special needs in the future (given Henry's rough start), but right now, if she hadn't read his file, she'd think he was a "normal" 4 month old. At one point, Henry was on his back, and one of his hands was grabbing the fingers on the other. He was fascinated by them. I think that he was figuring out some cause and effect from the interaction of one hand with the other. Toward the end of our visit, Tara said to me and Jeff, "So do you two work with Henry when I'm not here? Because he is doing great." I was taken aback by the question. I said, "Do you mean to tell me that you see a lot of kids whose parents don't work with them, except when you visit?" She said "Yes. Out of the 12 kids I see each week, there are three children, including Henry, who have parents that work with them. There is one family who asked me when I'll get their child to talk. I asked them if they had done the exercises that I have shown them when I am not around. They said no." Astonishing.

Henry gets a lot of attention from us and his grandparents. The projected outcomes for micropreemies are scary. It varies depending on the study, but it amounts to about 1/3 who have mental retardation, cerebral palsy, blindness, and/or deafness, about 1/3 who have some sort of "minor" learning disability, and about 1/3 who are "normal." Micropreemies are "at-risk" in part, because they enter the world when their brains haven't fully formed, and they are bombarded with stimuli to which they shouldn't have been exposed. Consequently, they are "wired" differently. Micropreemies, on average, have less gray and white matter in their brains than full-term babies. That said, it is also the case that much brain development occurs during the first three years post-birth. At birth (or what should have been a baby's due date), the brain has over a trillion neural pathways. During the first years of life, the brain figures out which neural pathways to keep and which ones to "prune," which is why talking and interacting with babies and toddlers is so important. Parents (and friends and family) help shape what is kept and what is pruned (see http://www.teachthemind.com/brainlearning.html for more information). So, of course, we work with Henry every day. To think that there are families who do otherwise is rather depressing and sad. But I guess that's the reality. We see Tara next Thursday when the massage therapist is also coming for a consultation.

We took Henry for a walk last night. At some point, he crashed on the couch during an episode of "Holmes on Homes" (which may be Jeff's new favorite show; I've gotten sucked into it too). As we took him to bed around midnight, he began to stir, so Jeff fed him a bottle. He began to stir around 5:30AM, but didn't fully get up until 6:30AM. Jeff took care of him, which was good, because I woke up around 3AM feeling sick (scratchy throat, like Jeff had before he got his full-blown cold). I basically slept on and off until 11AM. I had to get up a few times to pump.

It was 29 degrees this morning, so Henry missed out on his morning walk. He had a good day, though, inside with his dad. Jeff weighed him at 14 lbs 4.5 ozs. I tried to stay away, but I'm afraid that the reality is that Henry has been exposed to whatever cold Jeff and I have. We think that we made a mistake going to Coco's for breakfast on Sunday morning when my parents were taking care of Henry. Given crowd for breakfast, we probably should have realized at the time that it wasn't a good idea. Of course, there are other places that we could have picked up germs (for me, school). We are try to eliminate unnecessary crowd exposure when possible. So, no more breakfasts at Coco's until RSV season is over (March or April).







Henry almost rolled over today when doing some tummy time with Jeff. He had his legs going in the right direction, but he hasn't quite figured out the right arm placement yet. But he was very, very close. Jeff also had him doing some modified tummy time on this lap. He was rolling side to side on Jeff's lap. It was very cute. Henry got overzealous a few times and apparently plopped over on his face. I said to Jeff, "You let Henry fall on his face." Jeff replied, "It's how he learns." I rolled my eyes. We have slightly different parenting styles at times.

We are currently at my parents' house. My mom hadn't seen Henry since Tuesday. So this is a good chance for her to get some "Henry time" in. Last night, my sister Carolyn returned from her first stellar semester at vet school, so she will hopefully get to spend some time with the Doodle Bug tomorrow.

Henry Meets Grandpa Joe

It has been a strange week. The weather at the beginning of the week was unusually wet and cold. Consequently, we haven't been taking Henry out on walks as often. I think that he's getting bored staying in the house all day and night. We took him for a walk last night (Wednesday). When we went out for the walk, we bundled him up in a warm coat, but I turned around with him about halfway through the walk, because I thought his face and fingers were getting too cold.

Tuesday morning was very wet. It left the desert looking beautiful. The droplets of rain looked like pieces of crystal scattered across the desert. The pictures below are from our backyard. If you make the pictures larger, you can see the droplets of water all over the cacti and other vegetation.






Jeff has had a cold the past few days and has been staying away from Henry when possible. I have found it challenging taking care of Henry without Jeff to tag team with me. I thought I was getting the cold too the other day, but my trace symptoms didn't stick around (knock on wood).

Henry hasn't exactly had the most stellar week on the weight front (again)...
Tuesday: 14 lbs 1 oz
Wednesday: 14 lbs 1.5 ozs
Thursday: 14 lbs 1 oz

I am hoping that he picks it up soon. His pulmonologist wants a weighing in another week or so. If Henry has stopped gaining weight, then he'll have to go back on the oxygen.

His intake has been on the low side. He gives a lot of mixed signals about wanting to be fed, but then rejecting the bottle. I tried nursing him earlier in the week, hoping that it would encourage him. But he bit me three times. He may not have teeth, but it hurt nonetheless. Strictly bottle for him.

Grandpa Kenski has been coming over each day as usual. He stayed a little later with us tonight to watch some b-ball with Henry. My mom unfortunately has been working hard on two projects for her company, so she hasn't been able to come over since Monday. I can tell that she misses Henry a lot.

Grandpa Joe came in town last Wednesday, but he had a cold so he went down to Green Valley, where Jeff's aunts and uncles live. We had hoped that his cold would go away, but it didn't. So he didn't get to see Henry until this Wednesday. Henry was in his crib, and Grandpa Joe sneaked a peak. It was a very short visit, because he had to get to the airport. Joe commented that Henry doesn't look quite as chubby in person as he does in some of his pictures. Must be the camera adding 10 lbs onto him!

Henry has had a good week. Jeff fed him today, while I pumped. I could tell that Henry has missed Jeff this week. He was very smiley at him and gave Jeff his super adorable "I love you, Dad" look. Henry continues to work on his ab muscles. When he's in his bouncer seat, he frequently tries to sit up using his abs. If he's in a reclined position on pillows, the same thing happens. He doesn't have enough strength to control himself. I let him try to sit up and then catch him before he falls forward or to the side too far. I had him do tummy time on our bed today. He got so mad that he straightened one of his arms and ended up rolling over on his back (with some assistance from the dent that I was making on the bed). I put him on his tummy two more times and helped him roll over, because I figured it was good practice. We'll try it again tomorrow.

That's all from the Wild Kingdom. I'm signing off.

Somebody hit the snooze alarm, would ya?

The big news of late is Henry's sleeping. The last two nights he has actually slept through the night! On Saturday night, he went to bed around 9:30pm and didn't get up until 6:30am. On Sunday night, he went to bed around 10:30pm and got up at 6am. There was a little fussing around 4am Saturday night, but he didn't get up. Both times he has had large bottles and then gone back to bed for another hour or so.

He has also been sleeping more during the daytime. He might be influenced by the gray, wet weather we are having. With the clouds, it doesn't get light until later in the morning.

He is just managing to keep his food intake at a reasonable level. He hasn't really increased the amount he consumes for a while. His weight gain has been pretty slow as well. He is now at 13lbs 15.5ozs, which is an improvement. However, compared to 1.5 ozs a day he was gaining, he has really slowed down. Hopefully with all this sleeping, he is at least getting taller. Grandma and I noticed today that he almost touches from side to side in his bassinet. He used to fit that way no problem. It looks to me like he is about 24'' tall. He is also outgrowing much of his 3 month old clothes. He's swimming in the 6 month old but not so much that he can't wear it.

He spent the day yesterday at Grandma and Grandpa's house, after he finally got out of bed that is. On Saturday, Grandpa came over after the Wildcats game and spent the afternoon with Henry. Today, Grandpa spent the morning and Grandma took the afternoon shift.

My father continues to be quarantined in Green Valley. He is feeling a little better today, but there is no chance he is going to be well enough to visit Henry by tomorrow and he leaves Wednesday morning. The current plan is for me to pick him up Wednesday morning and drive him to our place to look at Henry through the window before heading to the airport. Sad but it's the best we can do for now. Of course the cold rainy weather is also supposed to stop here in Arizona and resume in Oregon. Some vacation!

13 lbs 13 ozs

Henry has been the same weight for three days now: 13 lbs 13 ozs.

On Wednesday, Grandpa Kenski came in the morning and stayed until 4PM. My mom came around 4PM to switch places, but as she came in the door, she felt congested. Turned around and went home. Basically, if anyone has even a slight suspicion of being sick, they unfortunately have to stay away. This is most unfortunate, because Jeff's dad arrived on Wednesday and alerted Jeff ahead of time that he had a small cold. Jeff picked him up at the airport and drove him to Green Valley, where Jeff's aunts and uncles live. We had hoped that the cold would pass after a day or so and that Joe would then come back to Tucson to stay with us, but his cold has gotten worse. Needless to say, everyone is disappointed in the situation. We hope things will improve in a rapid fashion.

I've discussed RSV before on this blog, but I know that it is still hard for people to understand why we have to live in relative isolation until Henry's two years old, especially during RSV season (November through April). Preemie parents are often accused being "overprotective" or "living in a bubble." Preemie lungs, especially those of children with CLD (chronic lung disease) or BPD (bronchopulmonary dysplasia), are simple underdeveloped even for the children's adjusted age. The lungs don't contain as much tissue AND the passageways are more narrow than those of the full-term babies. To illustrate the difference, one doctor's depiction of the difference between preemie and full-term lungs can be found at: http://www.preemiecare.org/LungsTrees03-4.pdf

Simply put, if the lungs get clogged, the situation can be deadly.

Henry experienced a night terror on Wednesday evening. He had dosed off while I was holding him. He started to scream and cry. Jeff tried to wake Henry up, but he wouldn't wake up for about 10 minutes. Jeff softly called out his name, but no luck. He just cried and cried. We tried to soothe him, but nothing seemed to calm him down. I'm pretty sure that the episode falls under the category "night terror" as opposed to "nightmare," because you can wake up easily from a nightmare. With night terrors, your body doesn't to outside stimuli the same way. At one point during the episode, Henry did have his eyes open, but he was clearly still asleep. I guess he'd done this a few days earlier when my mom was over. Hope these night terrors are few and far between.

On Thursday, my dad visited in the morning, and then returned in the evening to watch a Redskins football game with Henry. I received a call from Dr. Brown in the evening. He said that we can officially take Henry off the oxygen. He received the report from Dependable on the overnight pulse-ox study. Basically, off oxygen, Henry's oxygen saturation levels ranged between 94 and 100 percent. They were high most of the time. He said that they fell below 90 percent only 0.8% of the time. We actually never put Henry back on the oxygen after the overnight study, because we were monitoring the pulse-ox ourselves and knew that his saturation levels were high. Even when he was sleeping, I often saw the numbers between 97 and 100 percent. Nevertheless, it was nice to get the "official" word on the oxygen. We have to take Henry to see the doctor to get weighed in a couple weeks. The doctor wants to make sure that Henry is still able to gain weight while being off the oxygen. Henry's last three days haven't shown any increase, but before getting too concerned, it is important to recognize that: (1) he sometimes goes through plateau periods and then jumps up a couple ounces at one time, and (2) we had actually been a bit more restrained in our amount of fortification of as late, because we thought that a couple of "pure" breastmilk bottles a day might be good for his digestive system. We have to take Henry into Dr. Bianchi's to get one of his shots in a couple weeks; we'll get him weighed at that time and call the weight into Dr. Brown's office.

Either Wednesday or Thursday, the woman from Dependable who had done the analysis on the overnight study called to answer a question that Jeff had asked her about payment for the study. She said not to worry about it. I asked her if that meant that Dependable was taking care of it OR if the insurance company was paying it this time. She said that David at Dependable said that they'd take care of it. What a nice company. Nonetheless, I told her (as Jeff had the other day) that we are willing to fight the insurance company on it if Dependable would like. It is truly the insurance company's responsibility. It was, after all, a test ordered by Henry's doctor. It is rather ironic that Dependable makes money from my son being on oxygen, and yet it is also the company that has helped him get off it safely.

We gave Henry a bath before Grandpa Kenski came over on Thursday. Henry had a lot of fun in the bath tub. We put him in a Christmas outfit and tried to take pictures of him for a potential Christmas card. As soon as the camera came out, Henry put his smile away and gave us the most disinterested and bored expressions that he could possibly give us. As soon as the camera was turned off, he was all smiles. I pulled out the camera again. Henry decided to look bored again. Then, I gave up. Somehow, we'll have to find a way to trick him into smiling when the camera is on.

Last night, Henry had his longest stretch of sleep yet...from 10:30-11PM to 5AM or so. I can't remember if it was last night or the night before, but Henry managed to move to the side of the crib, and the monitor couldn't pick up his breathing, so it went off. Luckily, he was just fine.

Today, my dad came in the morning. Henry was rather fussy this afternoon. On our walk, we ran into our neighbors Janice and Linda, who commented on how big he is getting. Henry was chit chatty on the walk. He does like the sound of his own voice. He was kind of moody this evening. I don't think that he napped enough in the morning or afternoon. He gets rather cranky when he doesn't sleep (me too!). Henry finally got sleepy around 9:30PM or so. We put him to bed around 10:30PM. While he was asleep, I put my hair on his head, so that we could see what he looked like with hair. I suspect that it didn't quite capture what he'll look like.

In other news, we are working on Henry's tummy time each day, but he is back to hating it, so it isn't fun for anyone. The big thing that we've noticed this week is that Henry is really trying to sit up. He uses his abs to pull himself forward. That said, he doesn't have the strength or balance to hold himself upright for long. But he is trying...and getting kind of mad that his body doesn't do what he wants it to do.

Bye Bye Oxygen!

Yesterday, we received a pulse oximeter to measure Henry's oxygen saturations while he was off his supplemental oxygen. He maintained between 94 to 100 percent, which we believe is good enough to discontinue his supplemental oxygen. We still need to get confirmation from the pulminologist but for now we have him off the oxygen and I don't believe he will be going back on.

YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHH
HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
HHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Needless to say, I hated the oxygen with a passion. Henry was pretty adept at pulling it out of his nose. Recently he had started to scratch at his nose and bloodied himself several times with his little but sharp fingernails. I don't know how many times I stepped on the oxygen tube while trying to move him. It was a constant annoyance that I am incredibly happy to be done with. If the pulminologist calls and says we have to put him back on, I'm going to cry. To the right is a picture of me being happy with a tubeless, wireless Henry.

Yesterday, we had a pediatrician appointment with Dr. Bianchi. Henry weighed 13lbs 11ozs on their scale. His length was 23 inches and his head was measured at 40.7cm's. The length is shorter than what he was measured at the previous week but we don't put stock in that measurement since he moves to much to get an accurate reading. Today he weighed the same on our home scale.

Dr. Bianchi's visit went well. Henry was very active and talkative during the visit. He really enjoyed kicking his feet against the paper that covered the exam table. The results from his blood test showed that his alk-phos levels were down from 673 to 445. This test indicates that the body is stripping calcium from the bones to use elsewhere and a normal value is 350. So he is making great progress there.

Henry received another vaccination. He was due for both the DTaP and PCV. Kate and I have read that it might not be a good idea to do multiple shots at once. That seems like common sense. If you take a kid with a weak immune system and inject them with 2-5 different vaccines, would it be surprising if their little systems had a hard time adjusting? So Kate asked to get them done one at a time. So in two weeks we go back to get another shot. I can't remember which one he had yesterday and which one he gets in two weeks. Henry takes shots very well. He screams when the needle is in him but recovers quickly afterward.

This afternoon he had another visit from Tara, his Department of Developmental Disabilities case worker. She had some paperwork to fill out and then observed him as he fed, played in his bouncer and did some tummy time. She was very surprised at how different he looked without his oxygen on. She did a risk assessment which basically was a list of his current issues which are now the Metabolic Bone Disease and his fragile lungs. Questions like, does he run away from home, weren't really relevant.

Yesterday Grandpa visited in the morning and Grandma came over in the late afternoon after the doctors visit. Today Grandma came by in the early afternoon because Kate had a meeting at school. Grandpa visited in the evening so that he and Henry could watch USC play Memphis in basketball.

Henry continues to sleep well. Typically he gets up around 6-6:30 am. Today he took a bottle at that time but then went back to bed until 8am. What a sleepyhead! I assume it is partly due to the vaccine.

Alarm Scare...A False Positive

After my parents left last night, Jeff held Henry on the couch. Our kitten Bitsy was in a calm mood (a rare event) and laid her head sweetly on Henry's feet. Jeff monitored her closely, because Bitsy tends to attack the one's she loves. She's about 16 months old and acts very young and full of energy. But last night, she was in a tender and tired mood, which was nice.

Henry had some nice stretches of sleep last night. At one point, however, the Angelcare alarm system went off. Jeff and I jumped out of bed. It turned out that Henry had inched himself to the far side of the crib, so the monitor was unable to pick up his movements. It was the first false positive that we've had. And, it clearly wasn't due to a faulty alarm.

Today, Jeff took Henry for his morning walk, while I slept in. We didn't weigh Henry today.

We dropped Henry off at my parents' house. Then, we went to breakfast at Village Inn. I spent the day at my parents' house, while Jeff did several things around our house and did some shopping. When he was out and about, he couldn't resist buying Henry some new outfits.

Henry had a very good day. He was active. According to my parents, he spent a lot of time rolling back to side to back to side. At one point, my mom said that he almost ended up on his stomach, but then thought about it, and decided that being on his back was just fine. My mom bought him a bouncer seat the other day. She put it together for him this morning. We tried it when we arrived at their house. Henry loved it. It's a little different from the seat we got Henry at our place. In his new seat, he can kick his heals against the edge of the seat and lights and band sounds will go off.

When we got back to our place, Jeff put Henry in one of the new outfits. One of them is pictured on the left. When Henry was in his crib, he started rolling side to side again. He was practically on his stomach but his left arm was preventing him from rolling over completely. Once he gets a little more arm strength and control, he'll be rolling around in no time. We certainly have to get our house together more quickly than I expected in terms of picking things up and baby proofing the area.

On a side note, somehow, we broke the monitor on our digital camera. The camera still takes pictures, but it doesn't have a view finder, so our pictures are a little less centered than we'd like. We hope to rectify the situation this week, as Henry is incredibly photogenic, and he has given us tons of photo ops.

7 Months Old (Actual)

Henry turned 7 months old on Friday. It is hard for us to believe that so much time has passed. Our time in the NICU seems surreal when we give it much thought. When I look back on the pictures from his birth and the first week when he had the edema (major swelling), I get rather emotional. I don't know how we made it through the experience, but I'm obviously thankful that we did. And, I am very proud of Henry. He is special. He has an iron constitution.

We've had a relatively calm month (knock on wood), which has been great. Henry's nights have included at least one four-hour block of sleep, followed up by one or two two-hour blocks of sleep, which has been really nice for us.

Henry had a good week. His weight gain continues to be excellent.

Thursday (11/29): 13 lbs 8 ozs
Friday (11/30): 13 lbs 8 ozs
Saturday (12/1): 13 lbs 9 ozs






Grammy came over on Thursday morning to watch Henry, because I was giving a guest lecture in one of my department's graduate classes. Henry had fun in his bouncy seat. Grandpa visited in the evening.



On Friday, Henry wore his new coat (a gift from Grammy) on his morning walk. It looked very sharp with his Gap outfit (from Michele). Grandpa came in the morning and stayed until 2PM. We had a visit from Tara, Henry's developmental coordinator through the Division of Developmental Disabilities. Tara is also his developmental specialist. She'll be coming over once a week to observe him. Henry showed off his bouncy seat, which he loves. And, he did a tummy time push-up for her.







In the evening, it began to rain. The rain was light when we went out for our walk (with umbrellas). Henry looked very tired. Jeff had taken off Henry's cannula to give his face a break. Henry's has been scratching himself during his attempts to get the cannula out of his nose. We tried to get Henry to sleep, so that Jeff and I could watch a movie, "Flag of Our Fathers" (a Netflix that we've had since April). We watched about 7 minutes of it. Henry was incredibly fussy. He didn't want his bottle. He didn't want to be in his bassinet. He wasn't wet. Jeff and I decided that a bath would calm him. Henry and I did a little tummy time and played, while Jeff fixed him a bath. Henry loved the bath. It did calm him down.







After the bath, I took some pictures of Henry's left foot against the prints that were taken in June. It looks like his big toe is about half the size that his entire foot was when he was a little older than a month old!







We put the cannula back on him before putting him to bed. By that time, Jeff and I were exhausted and went to bed.

Grammy bought Henry a winter outfit that we put on Henry for his walks in the morning and evening today. Grandpa came over in the afternoon. I made a trip to Babies R Us and bought Henry a reindeer hat, which goes nicely with his snowman suit. I also bought Henry a BebePod seat. It looks like a Bumbo seat, which is impossible to find because of some bad publicity due to some stupid parents who put the seat on top of a counter and then their baby got hurt badly when it tipped over and the baby fell off the counter. We tried the BebePod out, and Henry seemed to like it. It will, of course, stay on the floor (which is where common sense suggests it should be).

I took Henry's cannula off in the afternoon. He had scratched his face bloody again. Incidentally, we do cut his nails regularly. We kept a close eye on his color while the oxygen was off. His color looked good. Very healthy.

Grammy brought dinner this evening. We had dinner while watching "The Duel in the Desert" (ASU vs. UA in football). Henry sacked out on Grammy as soon as she arrived. That was a good thing. He was getting fussy and hadn't been responding to Grandpa, Jeff, or me.