Henry's Diet Plan and Developmental Delays?

Each day runs into the next. Jeff and I have a hard time remembering what happened 12 hours ago, let alone a couple days.

On Sunday, I think that my mom came over in the afternoon, and my dad came over in the evening. This helped because I had a lot of work to catch up on.

My mom came over on Monday morning, and my dad came over in the afternoon. I talked with Jill the nutritionist in the morning. I called her because I wanted to know what we should do with the fortification of the breast milk. Henry had been sniffling over the weekend, so we stopped the Similac Human Milk Fortifier, but I had had a cold, which could plausibly explain the sniffling. Jill said that usually, allergies take on the same symptoms that they've already expressed. Henry's symptoms two months ago were bloody stools. He didn't have bloody stools over the weekend, making the cold hypothesis more tenable than the allergy one. She suggested going back on the Similac. At one point, she and Dr. Tsai had said that once we finished up the box of the Similac Human Milk Fortifier, we could then buy the regular Similac formula in the stores and use that as the fortifier (even though it was designed as a formula and not as an additive to breast milk). Well, I compared the Neocate to the contents of the Similac Human Milk Fortifier and the Similac Formula and found that the Similacs were not comparable when it came to important things like calcium. In fact, the Neocate does a little bit better than the Similac Formula, so why switch? The Similac Human Milk Fortifier, however, has about 11 times the calcium content as the Neocate. Jill wasn't aware of those differences. So she was going to talk to Dr. Tsai about getting us additional milk fortifier through the Similac hospital representative. She said something to me about how I probably knew more about the contents than she did. This isn't the first time that a medical professional has told me that. Sigh. I really wish that the medical professionals knew more than I did about these things. It doesn't instill a whole lot of confidence, because I am not medically trained (I just happen to read a lot because this is important).

In our discussion, I asked her how many milligrams of calcium Henry needed each day. The recommendation for his weight is somewhere between 800 mg and 1200 mg. But, that's based on formula babies, we think. Breast milk content from mothers in the USA ranges somewhere between 200 per day and 300 mgs per day. Why the discrepancy between breast milk and the RDA of calcium? Because breast milk absorbs better than does formula in the babies' digestive systems. What is unclear is whether adding fortifier to the breast milk changes the absorption of the calcium in the breast milk. In sum, Jeff and I are designing Henry's diet plan. We're checking in with the professionals to see what they have to say, but I think that there are no clear answers.

On Monday, Henry weighed 9 lbs 9 ozs.

Nurse Michael called on Monday. He had talked with Dr. Bianchi (pediatrician), who had decided to discharge Henry from the weekly nursing appointments. Michael said that he had mentioned to Dr. Bianchi that Henry was developmentally delayed. I was very calm but wondering what the heck he was talking about. I asked him what he meant. He said, "Don't you remember when we talked last time about Henry and you said he wasn't scooting yet. I told you that he should be scooting around now." I just said OK. And, let it slide. I have enough to worry about at the moment. I think that he's forgetting that Henry's adjusted age is two months old. Yes, he was born over 5.5 months ago, but gestationally, he just a two month old! Development is supposed to be measured based on their gestational age. I went to the message boards to ask other mothers when their babies started scooting around the floor...and several people confirmed my suspicions that babies don't scoot that early (preemie or full-term). I mean, Henry can move a few inches if he's so inclined. I saw him turn his body 90 degrees when he was in the crib once. And, he's moved a couple inches on the floor, but he is by no means "scooting" in any consistent fashion. Dr. Tsai seemed pleased with his push ups at the last appointment.

If Henry is like other preemies, he will probably have some delays, hopefully not permanent ones. I was a 33-weeker and was delayed when it came to sitting, crawling, and walking. I was able to pull myself to a standing position around 14 months. In comparison, my sister Carolyn (who was a full-term baby) was able to pull herself to a standing position at 5.5 months. She was a rather unusual child (pure muscle)...way ahead physically on everything. My upper body strength, on the other hand, was on the very weak side of normal until about junior high when I finally caught up and did well in tennis. So I know that delays can happen. On a funny side note, while Carolyn was very athletic, it took her forever to learn how to swim because she couldn't float (without body fat, she sunk like a rock!).

On Tuesday, Henry weighed 9 lbs 9.5 ozs. My mom came over in the afternoon. I had a meeting at school. My dad arrived in the evening. They both took care of Henry, while Jeff and I went to see Avenue Q, one of our favorite musicals. We saw the original cast on Broadway. The traveling version was good.

Jeff took the first night shift. Henry actually slept almost three hours straight at one point during the night! Nothing short of miraculous. When we switched shifts, Henry had another apnea spell on my watch. I fell asleep holding him. He was asleep too. The alarm woke us both up.

On Wednesday, Henry weighed 9 lbs 14 ozs. My mom came in the afternoon on Wednesday, and my dad came in the evening. We had a nice walk Wednesday evening. It was so nice outside that we sat outside on our porch and listened to Big Bad VooDoo Daddy until my dad arrived.






I went to sleep around 9:30PM. I got up around 11:30PM. Henry had been screaming for "La" (milk), and Jeff was too slow (defined by Henry as any demand that isn't fulfilled within 30 seconds). Jeff had felt good in terms of energy, so he continued watching Henry until 3:35AM and got me up. Unfortunately, Henry didn't sleep much at all during the night.

I talked with Jill either Wednesday or Thursday. Basically, she and Dr. Tsai agreed that continuing the Similac Human Milk Fortifier was the way to go. We don't need to continue the 24 cal approach if Henry's gaining weight so readily with 22 cals. We can also skip the occasional fortification and sometimes give him Neocate instead of Similac Human Milk Fortifier as the fortifier. Dr. Tsai got us another box of the Similac, which is great given the expense.

This morning, we had a nice walk. We continue to walk with Henry every morning and evening. I weighed Henry at 9 lbs 14 ozs...no gain, but considering that his last gain was HUGE, an occasional no gain is just fine.

Henry and I had a good time playing this morning. I introduced him to some new toys. He smiled and cooed. He's expanding his vocal range to include a lot of new vowel sounds. "I" was his first vowel sound (he started saying "Hi" a few weeks ago...it isn't consistent, and he certainly doesn't know what the word means, but it is very cute).

That's about it. My mom is here now with Henry.

Chunky Monkey

Despite receiving a lower dose of calories through the new fortifier change (22 cal using Similac Human Milk Fortifier vs. 24 cal using Neocate), Henry continues to gain weight at an impressive pace. On Saturday, he weighed 9 lbs 4.5 ozs. And, this morning (Sunday), we weighed 9 lbs 8 ozs! I don't quite understand how he is still gaining weight at such a fast pace. I thought it would slow down. I'm a little concerned that I won't be able to keep up with his demands.

On Friday, Grandma came over in the afternoon. I can't really remember much about Friday night. I think that we went for our usual evening dog walk.

On Saturday, we went for our morning walk. When we got back, we changed Henry into one of his very cool Gap outfits that Michele Leonhart got him. We are excited that he is big enough to wear some very stylish threads.

Henry has received two super cute blankets that were made for him. The one pictured below was made by Mary Stephenson. Henry was very smiley until I pulled out the camera. He would smile until the exact moment when the flash went off, making for some hilarious faces.






Patti Galvez made him a quilt, which was really neat. I think, however, that we are going to wait a few more weeks before using either Mary or Patti's gifts on a regular basis. I want Henry's reflux to subside just a tad because they are really nice pieces.

Jeff was going to take Henry over to my parents' house in the afternoon. But we received some sad news before we left. Henry's great grandmother had passed away (my dad's mother) in her sleep. She was 88 years old. During the last few months, she had trouble with her memory in general, but she always asked my dad about Henry and said that she'd been praying for him. I had hoped that she would get to see Henry before passing away. Henry has been so fragile that we haven't taken him out, except to doctors appointments and my parents' house (on occasion). Henry has gotten a lot stronger the past few weeks. Although we still need to keep him away from people in general, I wanted my grandmother to see him. But such was not the case. In any event, my grandmother lived a full life and left this world from her house (which is where she wanted to be).

I went outside in the afternoon and found a lizard trapped in the fence. I stopped Marley from going after him. He (or she) was caught in the wire that Jeff put at the base of the fence to discourage snakes from entering the dog yard. I took over Henry duty, so that Jeff could rescue the lizard. In the last few years, Jeff has developed a fascination with the lizards around here. There are many different types. He got a good picture of the lizard before he cut the fence to release him.

Jeff put Henry in his swing in the afternoon. We went for a walk around dusk. Grandpa came over in the evening to hold Henry. Henry had the largest vomit to date. It was colossal. Henry has been snuffling for a couple days. I've been sneezing on occasion, which started a couple days before Henry started sneezing. We are hoping that it isn't a cold (we know one of our neighbors is sick with one). I come into contact with a lot of students, which means lots of potential for sickness. It could be allergies. The air has been dirty the past week. Or, it could be a reaction to the Similac.

Before our walk this morning, Henry had another huge vomit. We've decided to stop the Similac for now. We really want to use it because it has about 7-8 times more calcium than does the Neocate. But the Similac has cow's milk and soy proteins in it. If Henry gets better, it doesn't necessarily prove that the Similac is the problem. If it is a cold, colds do get better. We'll talk to Dr. Tsai on Monday to figure out what we should do.

Other than that, we gave Henry a bath this morning. He was very good about being washed. We are impressed with his weight gain. Hopefully, he'll start getting longer in the next few weeks.

Good New, Bad News

Jeff put Henry in his crib last night before going to bed. I took the first shift. While I was pumping, the alarms went off. By the time that I got to the crib, the alarm had stopped. I looked at the monitor, thinking it was yet another "loose connection," but it had registered the episode as an apnea spell, meaning that the alarm went off after Henry had stopped breathing for 20 seconds. It took me five beeps to get to the room, which is probably about 5 seconds. So that's approximately 25 seconds of not breathing. The good news is that he got out of the episode himself; I didn't have to stimulate him. The bad news, of course, is that we haven't had the alarms go off in over a month, and this one threw us for quite a loop. It is frustrating to feel that we've made progress but then realize that Henry is still fragile in many ways.

I had a mirror and flashlight, which I used to check Henry's color without disturbing him. His lips looked pink, which was good. So I let him continue to sleep. He slept in the crib for about an hour and a half, which is a record. I fed him a bottle between 2-3AM. He wasn't the slightest bit tired, but I put him in his crib anyway. We are trying to not play with him at night, so he eventually gets adjusted to the idea that night time is for resting. I turned on one of his musical toys, which he liked. He spent about an hour cooing and listening to music. Around 3:30AM, I got Jeff up for our shift change. Henry was hungry again, so I fixed him a bottle before handing him over to Jeff. I pumped and then went to bed a little after 4AM. Jeff got me up at 7AM for our walk. Henry only slept 20 minutes during Jeff's shift.

Nurse Michael came over around 8:30AM. He measured his pulse-ox with oxygen supplementation and without. Without oxygen, Henry's saturation levels were between 87% and 92%. With oxygen, they were between 93% and 99%. I asked Michael if he had called Dr. Bianchi's office when Henry's saturation levels had dipped to 84% two weeks ago. He had. So it looks like Bianchi's nurses dropped the ball and failed to get back to us. Luckily, Henry's color looked fine that weekend, but I really wish they were more proactive and followed through on things.

Henry weighed 9 lbs 3.5 ozs on Michael's scale. The previous week, he had weighed 8 lbs 5 ozs. So that is a huge, huge weight gain for the week.

After Michael left, we tried putting Henry on an exercise ball (recommended by Judith and several people on various websites). It is supposed to be more gentle than being flat on the floor on one's tummy. Although we hold him, he has to use his muscles somewhat to balance. The only thing it seems to have done is help Henry throw up. At least he didn't yell too much. We'll keep trying.








Grandpa is holding Henry at the moment. I'm off to write an article review.

Two Months Old (Age Adjusted)

Today, Henry is 2 months old (age adjusted). In the future, we plan on celebrating both his birth certificate birthday and his gestational age birthday. If Henry had gone to term, he would have been two months old today. Developmentally, that's how old he is.

Jeff got me up at 4:30AM, so that he could get some work done. That meant that I had slept a little over 4 hours last night. In our new world, that's a great deal of sleep. Jeff got to sleep three hours earlier in the evening. Yea!

We went for our early morning walk. It was a nice morning. It is getting a bit cool though, so we are making use of Henry's new sock supply (courtesy of Aunt Erin).








Henry was super smiley this morning. He broke the 9 lbs mark. He weighed 9 lbs 0.5 ozs!

Henry is getting more attentive to sounds these days. We've known that he can hear. He passed his hearing test in the NICU (which is by no means a definitive test of hearing). We noticed yesterday that he is turning his head in the direction of sounds. On one of the walks yesterday, I was beside Jeff, who was carrying Henry. When I spoke, Henry turned his head in my direction. I read one book that said babies were supposed to do this by 1 month. This of course concerned me because Henry wasn't doing this by 8-weeks let alone 1 month. Dr. Tsai said that she'd expect it at 4 months of age, when we talked to her Tuesday. We were pleased when Henry started doing this yesterday. As we were looking over Henry in his crib this morning (he managed to spend about 10 minutes in his crib), Henry, who had been looking at his daddy, turned his head toward me when I spoke.

We had an appointment with Henry's secondary pulmonologist, Dr. Morales. Henry's pediatrician doesn't give the much needed Synagis shot, and Henry's pulmonologist at the Wilmot Clinic doesn't give it either. So, we were referred to Dr. Morales. My mom went with me to the appointment. Out of all our doctors' appointments, this one seemed more perfunctory than the others, so we decided that Jeff should skip it, rather than having to take time from work. Basically, the goal of today's appointment was to get approval for the Synagis shots. As we've mentioned before, these shots are very expensive. The insurance companies require certain criteria be met. Henry met several of the criteria: (1) he is less than a year old and born before 35 weeks...way before 35 weeks, (2) he has BPD or chronic lung disease, and (3) he is on oxygen. Both my mom and I really liked Dr. Morales. She was very thorough, yet gentle, with Henry.

We also liked the office staff there as well. It is rare that I give rave reviews to medical office staff (although I really do like Shawn, Dr. Bianchi's assistant). The staff at Dr. Morales' office were kind and organized (a nice combination). They weighed him at 9 lbs 3 ozs and said he was 20.5" long. Weight can be a variable thing from scale to scale. We are pleased that in tracking his weight, the trend is going upward at a nice pace.

We have an appointment on November 2nd for Henry's first Synagis shot. Synagis is not a vaccine. It is a shot full of antibodies given once a month. Preemies miss out on the transference of antibodies from mother to baby during the last trimester. The Synagis shot gives these antibodies that specifically fight off RSV. It isn't a complete preventative solution, but it significantly reduces the RSV risk. In adults, RSV comes across like a cold (it is a seasonal virus). 125,000 babies are hospitalized with RSV each year. In preemies, RSV is particularly harmful because the airways inside of preemies are smaller and tighter than in full-term babies, even when you correct for their gestational age. The virus clogs up the airways, which can be fatal. According to the literature, around 10 times more infants die from RSV each year than from the flu.

The RSV virus lives up to six hours on surfaces (longer than cold viruses). It is easily spread by breathing, sneezing, coughing, kissing, and touching. This is why Henry can't have contact with a lot of people and that his doctors recommend only caretakers spend time with him. A lot of times, people don't realize that they are carrying the virus. And then it is too late. A lot of doctors say that preemies such as Henry shouldn't have much contact with others for 1-2 years. Hopefully, we'll be able to have our friends over to the house by May (with strict hand washing procedures in place, of course). RSV season will be over by then.

Henry had fun in his bassinet this afternoon. He likes looking at the mobile and trying to hit the feet of his moose. I showed him his toy dog Spunky today (a gift from Talia and Scott). Spunky barks when you squeeze him. Henry found this very amusing.

Spunky's barking scared the heck out of our LabraPitt Roger (at least we think that Roger is half Labrador/half Pitt Bull...he's a pound puppy, so who knows for sure). Roger is a rather sensitive dog (he had a rough life prior to living at Club Kenski-Anicker and was pulled from his prior home). I think that he'll get used to Spunky eventually.

We decided it was time for another picture of Henry with Frost the Bull (Henry's first toy). The first picture was taken May 29. The second was taken today.










Grandpa came over this evening to hold Henry while the Diamondbacks were on. Henry is getting a lot of exposure to baseball these days.

Henry is with his daddy right now, who is watching the Discovery Channel. I think that I'm headed to bed. Tomorrow, nurse Michael will be coming for the last time. Other than that, it should be a relatively peaceful day. My parents will be coming over so that I can get some work done.

Fortifier Change

Today Henry had another couple of appointments. This is a busy week, 5 appointments. He saw Dr. Hassan, the GI specialist in the morning. We had some stool samples that were tested for microscopic blood that would indicate if he is having an allergic reaction to the old breast milk we were feeding him that was produced when Kate was eating soy and dairy. Kate and I had seen something in his stool we thought was blood and had stopped giving him the old breast milk. To our great surprise there was no blood! So it is possible that Henry is not allergic to soy and dairy and that it was only the fortifier that we were using when we left the nicu that caused the problem.

This opens the door for our next step in the feeding game. We are going to start giving him the similac fortifier which is what he was receiving in the nicu. The reason to make this switch is that it has much higher calcium content than other fortifiers. Henry needs to grow and increase his bone density which is what makes this so important. The concern was that it contains dairy and soy so if he was allergic to those things obviously he would not be able to tolerate it. We are going to give him this new fortifier and go back to Dr. Hassan with some more samples in a few weeks. If at that time he is still clear of blood possibly we will resume giving him old breast milk that contains dairy and soy or Kate will resume eating dairy and soy.

After we came home from that appointment it wasn't long before Judith from the Blake Foundation showed up. This was her first visit. She is evaluating Henry and going to be getting him enrolled in the various government programs that help monitor and aid children that are at risk for disabilities. She will be back in a week or two with an occupational/physical therapist who will evaluate Henry and give us exercises and tips for his physical development.

In the paperwork it was rather surprising how many programs there are for children. I believe there were about 7-10 different government programs that could potentially be involved with Henry. I guess I shouldn't be surprised, efficiency isn't what government is known for. I think the recent debate about the schip program demonstrates the inability of politicians to say no to programs to help children, despite their merits or lack thereof. No one wants to be branded child haters.

Besides the doctor and social worker visits it was a fairly typical day. Kate weighed Henry at 8lbs 15.5 oz early in the day. He had an active day bowel movement wise and so Kate weighed him later in the day and he was 8lbs 14.5oz.

Grandma visited in the afternoon, catching the end of the visit from Judith. Kate was able to get some grading done and I got some sleep. Grandpa visited in the morning and the evening. Henry missed his walk in the morning because I let Kate sleep a little later and then I had some work to do. We did go for a walk around sunset. He actually stayed awake for the whole walk which is rather unusual.

We took Henry off his oxygen for a few hours this evening. It has been a major pain trying to get the cannula to stay in his nose properly. One reason why is that his cheeks are now much chubbier. So when he lays on the side of his face the cheeks can squeeze and move which causes the cannula to move.

We still have not heard any progress from the pulminologist regarding the study that is to be done on his oxygen saturation's. I guess I need to make yet another phone call to the pulminology nurse to harass her. I want him off the oxygen in the worst way and getting jerked around by the pulminologist at this point is very frustrating.

Tomorrow we get to go to a second pulminonlogist so he can be evaluated for the Synegis shot. This is to protect him from RSV which could be devastating to his little system if he caught it. Of course our pulminologist and our pediatrician don't give the shot for some reason which is why we have to go to a second pulminologist. Just what he needs, to be exposed to yet another germ infested doctors office. We are supposed to keep him isolated with exposure to as few people as possible. Since he has been home it has been a constant parade of medical people through our house and constant visits to doctors offices. So we can't have friends and family over but he can go hang out in every doctors waiting room from here to Mexico. Annoying.

He has been sleeping better, as Kate has mentioned. However, we still aren't able to get him to sleep any amount of time in his crib. Yesterday after we came home from the doctor he slept for quite a while in his car seat. It has been suggested by others that the car seat is a good place to put a kid with reflux because they sit upright. So tonight I'm testing the car seat as a possible alternative to the crib, at least for now. It is nice because I can have him near me wherever I go but don't have to hold him. That leaves my hands free to do important things like type up this blog or put the dishes away. I have the car seat connected to a stroller which can carry the oxygen which makes things even better. We'll see how this goes. So far it is working fairly well. Hopefully I can get some sleep with this setup.

Push Ups

On Sunday, Henry spent the day at my parents' house. He ate and slept. He's becoming a good sleeper during the day. He still won't sleep in a crib. As soon as you try to move him, he wakes up and fusses. He gets held 95% of the day.

On Monday, we went for our usual morning walk. Henry wore his new hat. Grandpa came over in the morning. The plummer came early, which was great. He replaced a pressure valve, which fixed our problem. We can now take showers without having to turn off the water to the toilets, etc.

Henry weighed 8 lbs 12 ozs. That was a 3.5 oz gain!

Grandma came over in the afternoon. Grandpa decided to come back in the evening, while I was at work. Henry had a huge eating day. He broke his previous record by leaps and bounds, eating 824 mls! That's around 27.5 ounces! Quite a lot for a baby that isn't 9 lbs yet.

Jeff and I gave Henry a bath. He tolerated it well (even the shampooing, which has been his least favorite part of the bath lately). When we went to put him in an outfit, we discovered that he had outgrown it. He was unable to extend his legs fully in it! We were pleased that he has outgrown something!

On my food front, I had a few bites of a soup with chicken stock in it on Sunday. Had half a cup of soup with chicken pieces (really small ones) yesterday. I'm going to try to eat some chicken some time this week. Not looking forward to it, but without being able to eat soy or dairy, I'm out of luck. As I mentioned before, I have been eating 80 grams of protein, but getting it through eggs, beans, rice, grains, and nuts has meant a huge increase in my fat intake. I've been eating almonds (high in protein) and sunflower seeds...I just wish I actually liked eating them (I know most people do). They are quite high in fat. So, chicken is in my future. :(

Henry slept a lot today (Tuesday). He didn't eat that much. But considering yesterday's huge intake, this wasn't a surprise. We took him for his walk in the morning. He was a little fussy. Seemed hungry but then didn't eat much. We did a little tummy time. He had done really well on his tummy earlier in the morning when he was on my chest (an easier angle for him than being on his tummy flat on the floor). He was really working his arm muscles. Tummy time on the floor was OK. It didn't last long.









Henry vomited quite a bit this morning. He hadn't vomited much this past week (except for some projectile vomit over the weekend...yesterday, I think). We were getting used to normal baby spit up and were hoping that he'd be ready to get off the Prevacid, but I think that he still has reflux, such that the medicine is still necessary for now.

This morning, he weighed 8 lbs 14.5 ozs! Another big increase!

We had an appointment at the Developmental Clinic today with Dr. Tsai and Jill the nutritionist. During check-in, the nurse weighed him at 8 lbs 14 ozs. He was 20 inches in length and has a head circumference of 37.3 cm.

We got Dr. Tsai up-to-date on Henry's diet. Dr. Tsai was disappointed that the old breast milk didn't work out. We'll get confirmation tomorrow (from Dr. Hassan) about whether or not there was really blood in his stool. The nutritionist and Dr. Tsai were happy that I'm willing to eat chicken, while I'm breast feeding. They were both hoping it wouldn't come to that. They were very pleased with Henry's weight gain: an average of 42 grams per day since Henry's last visit with them. That's above average (quite a bit above average, which is usually 30 grams per day). I was a little concerned that he's gaining weight too fast, but they said it was fine. He's so small that he needs to pack it on for now.

Dr. Tsai did a quick check of Henry. She put him on his tummy. He wasn't thrilled but ended up doing the best push up we'd ever seen him do. He used his arms very well. I was pleased that he didn't lock them (which is a way that babies "cheat" on making their developmental mile stones). Henry was truly using the arm muscles to their capacity. I think that Dr. Tsai was surprised. Henry will be 2 months gestationally on Thursday. So far, Henry is physically doing what a 2 month old baby should be doing, despite being on the tiny side of things. That doesn't mean he won't have developmental delays in the future. But for now, he is doing well. Jeff and I were really proud of his accomplishment today.

My mom came over to the house this evening. And, Henry is with his Grandpa now.

Gaining Weight

Henry has slept more than usual during the day as of late, but he still doesn't sleep at night. He refuses to sleep in his crib. The longest that he's slept there is maybe half-an-hour on a great night.

Grandpa came over on Friday morning to hold Henry. Grandma came over in the afternoon. This gave me time to work on my course. I had to create a handout for my students because several of them have problems with basic synonyms. In class, we went through some z score problems where the goal was to figure out what percentage of people had scores lower than a given person based on that person's z score. Well, this week's homework assignment used the phrase "below" rather than "lower than," and not just one person, but several people have had problems with this interchange of phrase. Oye. I don't think that the American educational system is doing too well. But enough said about that.

During the day, I tried to get Henry to do some tummy time. I set him up on our dining room table, hoping that he'd feel better on his tummy if he could look at me. Well, he feel asleep. But this did provide a good opportunity for Henry to pose with his new coin 2007 coin collection from Uncle Jim.

On Friday, Henry weighed 8 lbs 5 ozs.

A person from the water department came over to look at our water meter. Long story short. For several days now, we have very little water pressure in the house. In order to take a shower or run the dishes, you have to turn off all of the water to the toilets. It has made life inconvenient. Last week, it was termite week. This week, it was plumbing. The water department says that there's a problem on our side of the meter (like 1 foot on our side of the meter), so we have to fix it ourselves. Jeff called a plumber. We hope they'll came out tomorrow.

On Saturday, Henry weighed 8 lbs 7.5 ozs. We went over to his grandparents' house in the afternoon. He slept and ate all afternoon. Jeff and I took a nap in Aunt Erin's old room.

After our walk this morning (Sunday), Henry weighed 8 lbs 8.5 ozs. He continues to do an excellent job at gaining weight.

On Tuesday, we reintroduced Henry to some frozen breast milk that was pumped when I was consuming dairy and soy. This was our test to see if Henry's allergic reaction was really a dairy/soy allergy or if it was just a reaction to the particular fortifiers that he'd been put on when he came home. Based on Henry's diaper this morning, we think that he does have an allergy to the cow's milk proteins in the milk. It wasn't obviously bloody. But we think that we detected some spots that, when tested, will show up as microscopic blood. We've taken samples and have put them on slides given to us by Dr. Hassan. We'll hand them over to Dr. Hassan on Wednesday. In the meantime, we've stopped giving Henry the old milk. Luckily, we did this test via the frozen milk rather than contaminating me (via me eating dairy), which would have ruined my supply for two weeks. I haven't eaten meat yet. I've been very careful to get at least 80 grams of protein per day through a wide variety of grains, legumes, rice, and eggs. And, I have been taking pills with fish oil in them for a while now. But, I am probably going to eat some meat this week. Jeff is going to start by getting some soups made with chicken stock.

Jeff took Henry over to my parents about an hour ago. I'm spending the day writing an article review, grading, and preparing my lecture for tomorrow.

This coming week is filled with doctors appointments. Tuesday: Dr. Tsai for development. Wednesday morning: Dr. Hassan for GI check. Wednesday afternoon: Development therapy workup with Judith from the Blake Foundation. Thursday: Pulmonary check-up to see if Henry will qualify for the synagis shots (this one is a no brainer, but we have to go through the bureaucracy in order to qualify).

Not Happy

Henry was an unhappy camper yesterday (Wednesday). Having shots on Tuesday didn't help. Plus, he really hates wearing the cannula. It was no picnic putting it on him. He threw a whole hearted temper tantrum. And, I can't really blame him. Having tubes sticking up one's nose and having cords around one's body is irritating.

Grandma Kenski held Henry in the afternoon. Jeff took a nap in the late afternoon. I tried getting him up for our evening dog walk. He sat up and said "OK," and then passed out on the bed. I decided it was best to leave him be. So, my mom went for an evening walk with me, Henry, and the dogs. We passed a woman who I hadn't seen before. She was upset because my dogs were off leash and approached her dog, a schnauzer, who was also off leash. She said to us as we passed, "I wasn't sure if I should throw rocks at your dogs or not." I decided to let that bizarre comment pass. Ummm...her dog was off leash too, and it seemed just fine with the doggie interaction. Some people are odd. I always find it peculiar when dog owners have trouble recognizing obvious doggie body language (complex stuff like, tails wagging = let's be friends). We ran into our neighbors Hal and Janice. Janice hadn't seen Henry in a while and was impressed with his size.

Henry and I watched the finale of "Top Chef." I've taken up watching that show, even though I can't eat anything they make. Speaking of food, Henry had a poor eating day. He took forever to drink down a bottle. And he wasn't burping well.

Jeff did the late night shift. Henry slept one hour.

Went for another walk this morning. It is a beautiful day out. Henry was looking super cute in his Cardinals hat.

The pulmonologist's office called this morning. Jeff had called them yesterday about the synagis shots. They don't give them, so we have to see yet another pulmonologist that does give them. I set up an evaluation appointment for next week. Apparently, a doctor's recommendation isn't enough. They have to do a full evaluation and then get approval from our insurance company. The shots are monthly (November through April) and are $1600 a pop (therefore, a lot of insurance companies turn them down). The shots are known to significantly reduce the risk of getting RSV (which can kill babies, especially those already with lung problems).

Judith from the Blake Foundation called. I think that AZEIP (Arizona Early Intervention Program) contracts their work out. Judith will be working on Henry's development. She asked me if there were problems she should be aware of. I mentioned his poor eating habits and his tight neck. She's going to have a feeding specialist come and see Henry. And, someone will come by to show us some massage techniques to loosen his muscles. She is coming by on Wednesday to get the paper work started and to begin evaluating Henry's development.

Other than that, we weighed Henry today at 8 lbs 3 ozs. He was 8 lbs 2 ozs yesterday. He didn't eat much last night or this morning, so I suspect we might not have any huge gains in the near future.

Guy Smiley

On Monday, Jeff and I took Henry out for his early morning walk. We weighed him at 8 lbs!!!

Dr. Bianchi called in the morning. Henry's thyroid levels are normal, but the TSH level is still a little high. However, two weeks ago, the TSH was 11.9 (9/17), and based on Saturday's blood draw, it was 8.19 (9/29). Normal TSH is 5.8, but at least his levels are trending in the right direction. TSH is a measure of how hard the body has to work to produce thyroid hormones. He'll be retested in three weeks. Henry's hematocrit (red cell count) was 30. It hasn't improved since leaving the NICU about 7 weeks ago. Normal is 32. His basic metabolic panel came back normal. His sugar level is a little low at 61 (low end of normal is 65). I asked about the Alk-Phos levels. Dr. Bianchi said that he didn't know Henry needed one! I am very frustrated at this. Dr. Tsai said that she was going to send Dr. Bianchi a letter about this. When I talked to Bianchi's nurses on Friday, I mentioned that Dr. Tsai was supposed to have sent a letter about a basic metabolic panel and some other things. I guess they ordered the blood tests based on my word of BMP (forgot when I said "and some other things") rather than actually looking at a letter that may or may not have been sent. We need to know his Alk-Phos levels because that is an indicant of bone density. I wish people would: (a) follow through on things, and (2) be conscientious about what they are doing. Too much to ask for form the medical profession? So, we'll have to wait yet another few weeks for the Alk-Phos.

I asked Dr. Bianchi about the pulse-ox levels. I don't think that nurse Michael ever called Bianchi's office about it. Nonetheless, I had mentioned it to Bianchi's nurses on Friday afternoon. Dr. Bianchi said to call the pulmonologist.

Despite sending an email Friday, I hadn't heard back from the pulmonology nurse about what to do with Henry's oxygen. On Friday, he had been between 84% to 90% on his saturation levels. So, I called the pulmonology nurse plus left a message for Dr. Brown at the Wilmot Clinic. No one returned the call. We decided not to panic because Henry's color has looked fine. If he was blue, that'd be another matter.

Grandpa visited Henry in the afternoon. In the late afternoon, Grandma came to help out. After I went to work (evening class), Jeff and Grandma took Henry out for his evening walk. When I got back from teaching, I took the first Henry shift, and Jeff took the second round.

Tuesday morning, we went for our early morning walk. Henry was incredibly smiley all morning. Jeff felt like Henry was doing an especially good job at paying attention to our faces. He's been interactive with us for a long time, but the depth of the interactions get better and better. Henry was super happy yesterday morning. It was nice to see.









We weighed Henry at 8 lbs 1.5 ozs!

Grandma came over to hold Henry in the early afternoon. Nurse Kathy from Dr. Brown's office called. She said that we should put Henry back on the oxygen. Gee, it only took them four days to tell us that! She's ordered a pulse-ox machine for our home to do a study on Henry.

Around 4PM, Jeff and I took Henry to Dr. Bianchi's office for his wellness check. Henry's pulse-ox was 94%, which was good. He was weighed at 8 lbs 2 ozs. Length: 19.5 inches. Head circumference: 37 cm.

Dr. Bianchi felt a little tightness in Henry's neck. And it appears that Henry prefers turning his head to his right side. The back of his head is a little flat on his right side. So, we have to do some stretching exercises for his neck. Switch the position from which we change his diapers. And encourage his to eat from his left side. I was a little surprised that his head was a little flat. We hold him most of the time. And, he is often upright. We have actually been trying the left side thing for a while (but perhaps not as aggressively as we could), because I wanted to make sure that his muscles were strong on both sides.

Henry was given his second round of shots. I requested that he be given sucrose. I gather that they don't use it as a standard procedure. Sucrose acts as a pain inhibitor for infants. I also requested that the shots be given two at a time (one in each leg). Well, all of the nurses had gone home, except for the one giving Henry his shots. And, I guess that doctors aren't willing to help out by giving shots themselves (they let the nurses do that). I was a little irked that my request couldn't be fulfilled. I'm mean a doctor should know how to give shots as well, right? The nurse who gave the shots did do it quickly. Thank goodness. Henry was very, very unhappy though. He went from being Guy Smiley to giving us the Beaker look. And he did the heart breaking "silent cry."

Grandpa Kenski came over in the evening to hold Henry. Jeff went to bed for a few hours. After my dad left, I took over Henry duty for a while. He was a bit fussy. We did give Henry some Tylenol before Jeff went to bed. We were hoping that would take some of the edge off. Henry didn't sleep much last night. I'm trying to get him used to his crib, without much luck. He did stay in his crib for over an hour (from 1:15-3AM). But he was making noises the entire time (not cries, but a lot of grunts and coos). Jeff took over around 3AM.

We took a walk with Henry and the dogs this morning. Henry is being held by Grandpa now. He continues to be a bit fussy today. We gave him another round of Tylenol. Hopefully, he'll return to being Guy Smiley soon.

Cardinals Fan

Today, (Sunday) Henry spent the day with his grandparents. We dropped him off around 9am. Kate did work most of the day and I had 6 hours of blissfully contiguous and uninterrupted sleep. I can't say how badly I needed that. I don't remember that last time I got more than 3 hours of sleep at once.

Henry had an excellent day with the grandparents. He watched football, ate and slept. He spent some time poolside while swinging in his swing. He also had fun playing on his Rain Forest play mat. The dogs were again very interested with Indy being most enthralled. Indy has taken to licking Henry's feet. What a bizarre habit.

Kate and I ventured over around 6pm and went for a walk with grandma and Henry in his stroller. He was very well behaved. Traveling really seems to agree with him.

Grandpa fed him while Kate and I ate dinner while watching the Eagles vs. Giants football game. The eagles were absolutely pathetic so it was best to keep Henry from watching such an atrocious display. If the Eagles keep this up I might have to raise him to be a Cardinals fan.

After we came home Henry continued to snooze in his car seat for a while. Eventually he woke up and we bathed him. He was good until we washed his hair at which point he screamed his head off. Strange how that used to be his favorite and now he can't stand it.

We didn't weigh Henry today. He had a good day eating so hopefully tomorrow will reflect it with a good weight gain.