Needles are No Fun

Friday night, Henry met several of our neighbors. Everyone is on the same page with the "Look But Don't Touch" policy. Everyone stands back and doesn't breath on him, which is a must. Our next door neighbor Hal is a doctor at UMC. We ran into his wife Swani walking with another neighbor Yvonne and their dogs. Between our two dogs (Marley and Roger), Swani's dogs (Annie and Luke), and Yvonne's dogs (Banjo, Chocolate, and Precious), it looked like we had our own dog park going on...all off leash. Everyone of the dogs (with perhaps the exception of Annie) comes when called. Hopefully, Henry will be a dog lover. I think that it is a prerequisite for living on our street. On our way back to the house, we ran into Hal and yet another neighbor Karen. Henry has met just about all of the neighbors, with the exception of Nick, who was on vacation with his wife Janice (who met Henry a few weeks ago).

Yesterday morning, my Dad held Henry for a long time. Nurse Michael stopped by. Henry weighed 7 lbs 11 ozs! Just about as much as his Aunt Erin weighed when she was born. We were really happy that Henry has been able to put on weight, despite the lack of oxygen supplementation. His pulse-ox measures weren't as high as we'd hoped. They hung around 84% for a while before popping up to 90%. Michael said that was OK, as long as he popped up to 90%. I really hope that Henry's lungs develop more. It is 100 times easier taking care of a baby who isn't on an oxygen tank. Parents who get to bring their kids home without oxygen are really fortunate.

Grandma Kenski came in the afternoon to hold Henry. We got a hold of Jill, the nutritionist. She said not to worry about the formula fortifier change, while Dr. Tsai is out of town. The Neocate should still give Henry what he needs as long as we are making his breast milk at 24 calories, rather than the mere 22 calorie supplementation.

Jeff and I took turns holding Henry in the evening. We began watching "Firewall." At some point, Henry was rather alert, so we turned off the movie and did some tummy time on the floor. Henry, as usual, wasn't excited about tummy time. Jeff got Henry to play with some rings, which was nice to see. We didn't finish watching the movie. Jeff had gone and called his sister. By the time he got back, Henry and I were passed out on the couch. I went to bed around midnight, and Jeff took the night shift. I gather that Henry wasn't sleepy last night.

We went for a walk this morning around 6:45AM. The weather was beautiful. Henry likes the walks. I think that he gets bored being in the house (specifically the living room) just about all day long. When we got back from the walk, we weighed Henry: 7 lbs 12.25 ozs.

Around 10AM, we headed to Sonora Quest labs to get Henry's blood work done. He needed a follow-up on his thyroid tests plus a BMP (basic metabolic panel) and hematocrit. We had to wait about an hour before we were called into the lab room. We waited outside because the waiting room was packed, and I didn't want a bunch of people breathing on Henry. Luckily, it wasn't too hot outside. The staff had a difficult time finding veins on Henry. They ended up putting hot packs on his arms to help locate good veins. The first two technicians stuck Henry but got no blood return. Henry was very upset. I wasn't too happy either, especially after one of the technicians commented that they should have used a smaller needle. Ummm....it is a small baby. Doesn't the necessity of a small needle seem downright obvious? Then, they called another technician into the room to help. Her name was Miranda. Jeff and I wish that they'd start with the big guns when it comes to Henry. Next time, I'll ask for Miranda by name. As it turns out, Miranda is the mother of a 27-weeker who is now 2. She spent 3 months in the hospital. I held Henry and fed him a bottle while Miranda stuck the needle in. The blood return was good. He didn't cry. We didn't leave Sonora Quest until 1PM.

My mom was home when we returned. She took Henry, while Jeff took a nap on the couch and I graded exams. Then, Jeff and I got our flu shots. My mom and dad did it this morning. Anyone who takes care of Henry has to have flu shots...per doctor's order (the pulmonologist). Henry had an active afternoon, while we were out. He was pretty fussy in the evening. But Grandpa Kenski is over now, and Henry is taking a snooze on his chest. Grandpa and Henry seem to have an understanding.

GI tests

We met with Dr. Hassan, the GI specialist, yesterday. At the appointment, Henry weighed 7 lbs 9 ozs. But he shrunk on length and head circumference...measurement error of course. I brought in four stool samples, which were checked for microscopic blood. The tests came back negative. So Dr. Hassan said that we could try the Similac 24 cal. He'll see Henry in two weeks.

In the waiting room at the Wilmot Clinic, we ran into Joseph and his parents. Joseph had approximately the same due date as Henry but was born two weeks later at 2 lbs 10 ozs. Quite a difference that two weeks can make. Joseph left the NICU about a month before Henry. He now weighs about 4 lbs more than Henry does. His parents were excited, because Joseph just got off of oxygen on Tuesday as well. So Tuesday was a good day for many babies!

I called Dr. Tsai today to get the box of Similac 24 cal. Shelly at the NICU desk paged Dr. Tsai twice...no answer. I called again today, and apparently, Dr. Tsai is out of town for the next week. Ugh. I called Jill, the nutritionist, who works with Dr. Tsai, but she hasn't called me back. Very frustrating.

I took the 2:30AM to 5:45AM shift. I was very tired, but Henry wasn't. Guess he'd slept too much last night on Grandpa's chest.

Jeff and I took Henry for a walk with the dogs this morning. Morning is Henry's best time of day. He's especially happy and alert in the mornings...he doesn't get this from me or Jeff.

On our scale, Henry weighed 7 lbs 9 ozs this morning. No gain, but Jeff and I figured that it might take a few days for his body to adjust to not having the supplemental oxygen. He also hasn't eaten quite as much the past two days.

Henry is with Grandma now. She had him in his swing for a while, faced out toward the window. He likes looking outside. He also spent some time in his Pack 'N Play. He was enjoying his alone time.

Footloose and Cannula Free!

Today was a tremendous day. We went to the pulminologist (Dr. Brown) today, and he decided that Henry could be without supplemental oxygen! We immediately took the nasal cannula (oxygen tubes up his nose) off. For the first time in his life, he doesn't have a single tube or wire attached. He's gone wireless! No more trying to walk to the kitchen to get a bottle with Henry in one hand and a rolling canister of oxygen in the other. No more worrying about stepping on the tubes and yanking his head off. No more yelling at the dogs for getting tangled in the mess of tubing or at Bitsy for playing amongst the tubes. No more looks for people in the doctors' offices wondering why I have a big backpack on with tubes running to our baby. What welcome progress.

I was a bit surprised because they didn't do much of an evaluation. They watched his saturation level for a few minutes, while on the oxygen and while off it. He pretty much maintained 100% the whole time which was good enough for them. We knew he could stand being without the added oxygen because he had done it for a couple hours in the nicu once. The concern is that he will tire after a time and need to be put back on it. We get to keep all the equipment for now until they are absolutely sure he doesn't need it. The major thing we need to look for is his weight. If he keeps gaining weight, then his oxygen level is fine without the supplementation. If he doesn't gain weight, then they might put him back on.

Henry is also growing very well right now as well. I feel a bit guarded on this front. So many times it has seemed he was about to take off only to have him stall again. This time though, it might be for real. He's been gaining at least an ounce a day for the last week or two. Yesterday he gained 2.5 ounces in one day, putting him at 7lbs 7.5 ounces. Today the doctors office weighed him at 7lbs 8 ounces but I don't really trust their measurements. They tried to tell us that he only weighed 6 pounds once when we knew he was around 6lbs 14 ounces. We didn't weigh him on our scale today. I was hoping he would make a big jump again today because he ate more yesterday than he ever had before, 719mls.

Tomorrow we have a follow up with the GI doctor, Hassan. He will be checking to make sure that Henry really isn't having any blood in his stool. If not, then we might have to test the theory that it was the fortifier of the breast milk that caused his bloody stool. If that is true, then Kate could eat dairy and soy again which would be great for her.

I'm too tired to say much. Here's a thousand words instead. Isn't he handsome when you can see his face?

Double Take

Jeff took the first shift last night holding Henry while I finished writing the exam that I'll be giving tonight in research methods. Around 4:30AM, I took Henry. He'd only eaten 10 mls since 2:30AM, but he seemed really sleepy. I put him on my chest and laid down on the couch. Jeff helped me put the Boppy pillow (curved shape pillow that runs along the waist to make feeding more comfortable) around Henry for extra support. Henry slept soundly until 6:15AM. I think that he would have slept longer, but Bits the kitten had joined us. She nestled on top of my shoulder. She very much wanted to give Henry at bath, but I wouldn't let her. Although she's an incredible feisty kitten, she is also extremely affectionate and loves to lick everyone (people, dogs, cats, etc.). Once Henry is a bit stronger (a year or so from now), I won't be quite so protective. But unfortunately cat mouths aren't exactly hygienic locations.

Jeff did some tummy time with Henry while I got his bottle ready. Henry still hates tummy time, but he's getting stronger, even from the scant amounts that we do. He did about 10 minutes this morning, and another 5 minutes this afternoon. He's doing a good job picking up his head and pushing off with his arms. He rolled over once. We aren't as excited about this since talking with Dr. Tsai. She said that with some milestones, if babies are doing it early, it usually means that they aren't doing it correctly with the appropriate muscle groups. The reason that he's able to roll over is that he stiffens his legs, which causes the body to roll. What we want him to do, however, is to use his trunk muscles. If he learns to cheat, he'll be less inclined to use and develop the appropriate muscles later on. She also warned us against letting babies stand on their legs with their own body weight at this age. She said that this also promotes muscle cheating. It could short change his development down the road. There is a time line for everything, and from what I gather, it is best that they do things in the appropriate sequence. Henry's use of his arms to push up is appropriate and a very good thing.

My dad came in the morning to hold Henry. My mom came around 12:30PM. She is holding him now.

The exciting news of the morning was that Henry weights...drum roll...7 lbs 7 ozs. On the first weighing, he weighed 7 lbs 7.5 ozs. We did a double take on that one, because we couldn't believe that he'd gained 3 ozs in one day. He had a good eating day yesterday, but nothing above the ordinary. Our recheck had him at between 7 lbs 7 ozs and 7 lbs 7.5 ozs. We're going with 7 lbs 7 ozs (taking the conservative estimate).

More of the Same

Jeff hasn't gotten much sleep this weekend. He did, however, sleep almost two hours straight from 5:40 to 7:40PM tonight! Jeff is always needed for this or that at work. Jeff often puts in long hours at work. I consider it a good week for Jeff when he's only worked 48 hours. The programmers at his work seem to have a knack for trying something (unscheduled) that slows the company's computer system down at about 5 minutes to 5PM EST a couple times a week. Around this time last year, he received at least one call in the middle of the night for three months straight. That was truly annoying. But this week takes the cake. I'm used to Jeff's long hours. I work long hours too (pre-April 30). It is just so much harder when Henry needs us 24/7.

On Saturday, I took care of Henry in the morning. He weighed 7 lbs 3.5 ozs. My mom came in the afternoon. And, my dad helped out in the evening. I meant to take a short nap, but it lasted until midnight when Jeff got me up to pump. My dad stayed until around 11:15PM. He said that Jeff had crashed on the couch, and he didn't want to disturb him because he knew that Jeff hasn't really slept since Tuesday. After Jeff got me up, I did some things around the house, while Jeff watched Henry. Around 3:30AM, Jeff asked me if I wanted to go to bed. I said yes, just for a little while. But Jeff let me sleep until 6:30AM or so. I think that I may have slept 6 hours (albeit not straight, but it was amazing nonetheless to get 6 hours in a 24 hour period). I suspect that Jeff wanted me to sleep because one of the unfortunate side effects of sleep deprivation is that it significantly impinges upon my milk supply. Friday was not good on that front. I was afraid that we'd have to look into formulas for full feeds--something I really, really, really don't want to do. Luckily, even a little sleep makes a huge difference.

This morning, Henry and I did some tummy time. He did pretty well. But he still isn't a tummy time fan yet. I placed a little pillow from his tummy time mat under his arms. He's big enough now where the pillow actually works. Previously, he'd tip over the side of the pillow like the board of a titter-totter (his head plunging over the side of the pillow).

Grandpa Kenski came over this morning to hold Henry and watch football. Grandma Kenski came over this afternoon. I managed to get a little work done on my research methods exam (which I am giving tomorrow). Grandma, Henry, and I did a little more tummy time in the afternoon. And, Grandma helped me give Henry a bath. Henry's weight today: 7 lbs 4.5 ozs.

This coming week, we have two doctors' appointments. First, we meet with the pulmonologists on Tuesday. Second, we meet again with Dr. Hassan, the GI specialist, on Wednesday. And, I have to reorder Henry's oxygen. Jeff took a picture of Henry's oxygen tanks, which have turned our dining room into a storage room.


I took some pictures of Henry today, just to show how much he's grown. The first set of pictures show Henry in the cute hat that Jamie knitted for him. She went online and found the perfect measurements for a baby under 1 kilo. The first two pictures were taken of Henry on June 10. The first picture is of Henry being held by nurse Melissa J. who helped transfer Henry from the isolette to Jeff. The second picture is of Henry and Jeff kangarooing. The third picture was taken today, while Henry laid on my dad's chest.









The final picture, taken today, is of Henry's foot next to his foot prints. I believe that these foot prints were taken in June.

A Long Three Days

It's been a long three days. My exhaustion was highly elevated Wednesday. Unfortunately, this coincided with a computer crisis at Jeff's work, which has kept him occupied for last three days. Over the last three days, I've had about seven hours of sleep. Jeff has probably had about two hours of sleep (naps while holding Henry in his arms while I'm pumping). Both of my parents have helped. While they have been here, I've tried to manage the household duties (taking care of the pets, doing the dishes, etc) and take naps when I can.

WEDNESDAY (6 lbs 15.5 ozs)

We had a doctor's appointment with the GI specialist, Dr. Hassan, in the morning. The crisis at Jeff's work occurred right before we left. Jeff had to stay home to take care of things at work. I called my mom to see if she could come with me. Someone has to stay in the back with Henry when we are in the car. Henry can't be left unmonitored for long periods of time. The GI specialist's office was on the east side of town, about 45 minutes from where we live. Luckily, my mom was able to come. Otherwise, we'd have had to cancel the appointment, and the doctor only meets patients at the clinic once a week. He spends the rest of his time going to the hospital around town.

When Dr. Hassan came into the room, he asked us why we were there to see him. I found this frustrating. The doctors see so many patients that they have no idea why one is there. This appointment was made while we were in the NICU. It was a follow-up on Henry's reflux. Dr. Hassan was the one who prescribed his reflux medications. I find it a bit disturbing that one can prescribe medications without knowing the patient's entire medical history.

I told Dr. Hassan that he had conducted the Ph Probe on Henry and diagnosed him as having reflux. Isn't there a file that has this information in it? I also mentioned Henry's problems with changes to his fortification (Similac 24 cal in NICU to Enfacare to Isomil to Neocate). I told Dr. Hassan about Dr. Tsai's plan to switch Henry back to Similac 24 with Dr. Hassan's approval. Dr. Hassan didn't want us to make any changes to Henry's diet until he tests Henry's stools for blood. He said that Henry could be having internal bleeding (hence blood in stools), but we might not notice it. He said that there could be microscopic blood in the stools. We have an appointment with him next Wednesday. In the meantime, we'll be collecting three stool samples on different days and bringing them to that appointment.

I pointedly asked Dr. Hassan if I should be eating meat, considering that I'm a vegetarian who can no longer eat dairy or soy b/c of Henry's allergies. He said that I have to get the amino acids from somewhere. He stopped short of telling me that I needed to eat meat.

I told him my theory about NEC (necrotizing entercolis...death of the intestines). 5% of preemies in NICUs get NEC. 7% of infants have milk allergies. Yes, there is an ecological fallacy in my inference making. But when you combine it with the knowledge that 1.2% of breast milk only preemies get NEC, 2.5% of breast milk with fortifier (usuallly cow's milk fortifier) preemies get NEC, and 7.2% of formula-only babies get NEC, my inference seems pretty darn logical. I'm not claiming that the only cause of NEC is milk-based formulas or fortifiers. However, I think that it is sufficient to produce NEC in many instances. Why do 1.2% of preemies who get only breast milk get NEC? Probably because their mothers are consuming milk products. I certainly was. If I could do it over again, I would cut dairy out of my diet from the start. I believe it would have avoided the NEC scare and rounds of feeding intolerances, preventing weeks of slow or no growth to Henry. Dr. Hassan thought my explanation was plausible. He believes that all babies are allergic to cow's milk, but a smaller percentage of those babies have severe reactions. Cow's milk is for baby cows not human infants. I asked him why amino acid formulas aren't being given to preemies from the get-go. He said that the pharmaceutical companies and FDA don't have any incentives to consider that perspective and there isn't the research to back that explanation. He didn't think research would be done on it because you'd need an experiment to "prove" it. I recognized that a clean randomized experiment wouldn't be plausible (or ethical), but surely an observational study could be done. After all, there are plenty of medical treatments that are given without clean, randomized experiments behind them. Moreover, half the medications that they give preemies in the NICU aren't FDA approved for preemies.

As we left, Dr. Hassan mentioned that he thought Dr. Bianchi, Henry's pediatrician, was one of the best in town. He said that Dr. Bianchi really cares about his patients.

My body was really hurting by the afternoon. I've had aches in my legs and joints for days. And I began hurting around the lower back. When we got back to the house, I called my doctor to make an appointment and then pretty much crashed. I literally couldn't move at one point for about 10 minutes. But my mom had to go and Jeff had to work, so I somehow managed to get up to take care of Henry.

Henry had a cute little Nike outfit on when I got up. Our friend Marilyn sent it to him. We are excited that he'll finally get to wear the adorable outfits that our friends have given him. Until recently, he's been stuck in preemie-wear...too small to fit the normal newborn sizes.








My dad came over in the evening and held Henry. Jeff and I agree that Henry is neither a Mommy's boy nor a Daddy's boy, he's very clearly a Grandpa's boy. Henry had a good snooze on Grandpa. Once Grandpa left, I took care of Henry. Jeff continued to work. I napped a little bit when Henry napped on my chest. Henry doesn't sleep long, but his sleep is definitely better than it was two weeks ago.

THURSDAY (7 lbs 1.5 ozs)

In the morning, I put Henry in the bassinet. He discovered the handsome devil in the mirror. I decided that it was time for Henry to listen to music. I contemplated whether he should listen to Bach or Mozart. I settled on Buddy Holly.








This day was a bit of a blur. I think that my mom came in the late morning and stayed until late afternoon. I think that I took a nap at some point. And I got some work done around the house.

I called Dr. Tsai to update her about what Dr. Hassan said. I think that she wants Dr. Hassan to take charge of Henry's nutrition. I don't see that happening. That isn't the role that Dr. Hassan sees himself in. She feels that the Similac 24 cal would be better for Henry, because it is made with preemies in mind. She wants to know with certainty: Is Henry allergic to dairy or not? The bloody stools coincided with the change to Enfacare. But he didn't have bloody stools (visible bloody stools, that is) while in the NICU on Similac 24 cal. She got a box of the Similac 24 cal from the Similac representive. It is expensive: $150 per box. A box would last us a week.

Jeff and I took a walk with Henry around sunset.

My dad came in the evening to hold the Grandpa's Boy. I went to the grocery store. Jeff crashed for a little while on the couch.

Then, I took care of Henry after my dad left, while Jeff worked. Another long night.

FRIDAY (7 lbs 2.5 ozs)

My mom came in the morning. I slept for an hour before heading off to my doctor's office. It was probably a waste of time. My body is physically hurting, but the causes are pretty obvious...lack of sleep and poor diet. Jeff and I simply haven't had the time to put together well-balanced meals. The breast milk is really important for Henry, but the side effect is a huge drain on me. Dr. Hee decided to do a basic metabolic panel on me. I told him that I also needed a breast milk composition analysis ordered (it was suggested by the nutritionist at the Developmental Clinic). After I met with him, it took a while to get into the lab. The person ahead of me was having a break down. Once my blood was drawn, I asked the lab worker what procedures were needed for the breast milk composition analysis. She had no idea. She called Sonora Quest, but they don't do it. Dr. Hee's nurse called a lab in Phoenix that does it. But they didn't give her the procedures. Another person in the office called them to get the procedures, but the person she talked to had no idea that the lab even did a breast milk composition analysis. Long story short, I waited two extra hours at the doctors. No one could find out what needed to be done. Dr. Hee said I should go home and they'd call me with the directions. No one has called yet, however.

While I was at Dr. Hee's office, nurse Michael came. He thought Henry looked much bigger. He weighed him at 7 lbs 2.5 ozs. He said that Henry's lungs sounded good.

Grandpa came in the afternoon. I took a nap. After Grandpa left, Jeff and I took turns with Henry. Jeff made dinner. Jeff is holding Henry now.

The Lazy Sucker, or the Adventures of Breast Milk Martini Boy

Jeff took care of Henry while I was at work last night. I had my fun-filled three hour class on research methods. I had a lot of questions after class. Then, I went to the store and got the car gassed up, which meant I didn't get home until 10:30PM. I was exhausted. Fell asleep on the couch for a while. Then, Jeff told me to go to bed. He took the night shift. I think that I got more than four hours of straight sleep, which was great. I can't go much longer than that, because I have to pump to keep up Henry's food supply. Jeff got a little bit of sleep. Henry had at least one period where he slept for an hour straight!

I took care of Henry until my Grandma Kenski came from 8-10:30AM. This allowed me to get some things done around the house. Dr. Bianchi called with the results of Henry's thyroid test. Jeff took the call. Henry's thyroid level was normal, BUT his TSH level was elevated. As we understand it, this means that Henry's body has to work too hard to get his body to produce normal thyroid levels. Dr. Bianchi wants us to get Henry's blood work done again in two weeks to recheck the TSH. At that time, he also wants the hematocrit (red blood cell count) checked. We won't have the results of the genetic screen back for a week or two. Jeff told Dr. Bianchi that we took Henry off the Reglan. He didn't seem to have a problem with that.

When Grandma left, we weighed Henry at 6 lbs 14 ozs. At noon, we left for Henry's appointment at the Developmental Clinic on the other side of town.

We arrived around 1PM at the Developmental Clinic. Our appointment was with Dr. Tsai. The nurse who did the initial check before seeing the doctor weighed Henry at 6 lbs. We told her that their scale was off. I don't think that she believed us at first. But it did turn out that the scale wasn't properly balanced initially. He weighed 6 lbs 13.9 ozs on the recheck. His length was 47.25 cm. And his head circumference was 35.9 cm.

Dr. Tsai was one of Henry's doctors in the NICU. We like her a lot. Her communication style is direct. She pulls no punches, even when news isn't great. We appreciate that. The Developmental Clinic is relatively new. Therefore, she is able to block hour-long appointments with patients. Usually, she meets with babies at 1 month, 6 months, and 1 year (age corrected). Because Henry's so small (even with his age corrected, he's still very tiny for a 25-weeker now over 1 month age corrected), she wants to see him more frequently. We went over Henry's diet history. She brought in a nutritionist, Jill Feldhausen, for this visit. Since leaving the NICU, Henry's gained an average amount of weight (about 30 grams per day) for a baby. That's good. But because he is small, she wants him to gain a bit more than that per day. Over time, preemies catch up with full-term babies by about two years of age. She'd like Henry to start that catch up now, rather than waiting. Given that Henry's problems with blood in the stool happened about a week or two after switching from the hospital's Similac 24 cal fortifier to the Enfacare store bought formula, Dr. Tsai was wondering if it was the fortifier that caused the problems. Although Henry hasn't been bleeding with the Neocate as fortifier, she doesn't think that it is going to provide him with some of the electrolytes that he needs. Plus, she'd like to see my breast milk fortified at 24 calories rather than 22 calories. For now, she is having us increase the Neocate in his breast milk to make it 24 calories. We'll do this increase slowly, so as not to overwhelm him. She is going to try to acquire some of the hospital Similac 24 cal (from the NICU or from the Similac representative), because she thinks it would be better for him. It is cow's milk-based. But he did tolerate it before. She'd like him on it again. She is concerned that my diet has now become too restricted, which isn't good for me or for Henry ultimately. She was thinking that I should try to reintroduce soy or milk into my diet. The concern more than anything is my protein consumption. I have said that I'm willing to eat meat. But having not eaten meat in 26 years, I probably don't have the enzymes to digest it. That would take a while to acquire.

From what I understand about nutrition, although meat-eaters like to think that the vegetarian diet is unhealthy because of lower protein levels, I think that the research shows that American meat-eaters actually eat too much protein. Just as too little protein isn't good for the body, overconsumption of protein (or any nutrients for that matter) is very hard on the body. The body, after all, has to process and get rid of excess protein that it doesn't need. Consequently, the vegetarian diet (if the vegetarian has variety in her diet) eats more appropriate amounts of protein and is thus healthier than the average meat-eater. When one is pregnant or nursing, the need for protein increases. I should be eating 80 grams of protein per day. Once dairy and soy got cut out, I know that I haven't been even coming close to this target. I eat some beans and rice and eggs, but I'm not able to keep up with 80 grams per day. The nutritionist was less worried about my calcium. My milk should be OK for Henry because my body will pull it out of my bones to make the milk fit for him. That's not great for my health in the long-run, of course. But I've been drinking rice milk and Almond Breeze (one glass has 30% of one's needed daily calcium intake) and getting it from other sources too.

Jeff suggested that rather than having me introduce soy or dairy back into my diet and see whether Henry can handle it, we use some of the pre-diet change breast milk that's in our freezer. If I start eating soy or dairy, it could contaminate my milk supply for the next 14 days. If Henry can handle the frozen breast milk, then we can assume that me going back to eating soy or dairy shouldn't be a problem for him. Dr. Tsai and Ms. Feldhausen liked this idea. They want us to run it by Dr. Hassan tomorrow, when we have our GI appointment (also at this Development Clinic).

I know that a lot of parents out there think that they've experienced reflux and sleeping problems with their children. I can guarantee that Henry is on an extreme end of both these issues that few people have actually gone through. It is hard to get this across to doctors who think that they understand, because mild reflux and sleeping issues are common. Extremities are not common by definition. One good thing about this appointment was that Dr. Tsai really listened to what we were dealing with. And, because we spent about 1.5 hours with her, she got to see Henry's eating habits firsthand. Once you see what we are dealing with, it is an eye-opener. When I say that Henry doesn't sleep much, I mean that Henry hasn't slept more than four hours per day on a "good" day. These fours hours are divided out across the day. Typically, he eats every hour. When he eats, it is really slow. Then he does a light cat nap. Then the cycle begins again. In the office, we had a 2 ounce (60 ml) bottle. He was hungry when Dr. Tsai came in. We gave him the bottle. He drank about 30 mls over 40 minutes. At the 40 minute mark, Dr. Tsai asked if that was normal. A typical baby would probably have downed 2 ounces in 20 minutes. We said, "Yes. This is what he does." Over the rest of our visit, Henry drank the remaining 30 mls. 5 mls, then stopped for 5 minutes, 2 mls, then stopped for 3 minutes, etc. Painfully slow. But this is how we've been living for the past 5 plus weeks. She said, "He's a lazy eater." She asked if we get much sleep. We said, "No." She was impressed with the fact that we've been able to survive this. Although not ideal for us, she and the nutritionist suggested that Henry is eating this way because of his reflux. He's managing to keep things down because he takes them in such small doses. This, however, is also contributing to his lack of sleep because he ends up being hungry all of the time. Once he is able to take more in his stomach, it will sustain him longer, and he'll be able to sleep better. At some point (soon hopefully), she wants us to push him on his eating. Make him wait a little longer so that he feels compelled to eat more at any one feed. However, because he is "fragile," she doesn't want us to push him quite yet. She could tell that Henry has Jeff and me well-trained. Henry continued to take his 2 mls here, 4 mls there, throughout our discussion. Dr. Tsai said it was like Henry was sipping a martini over cocktail hour.

As far as development goes, preemies tend to be stiff in the legs and arms. During their NICU stay, their arms and legs aren't flexed, as they would be in the womb. We need to encourage Henry bending his legs and arms, so that it feels more natural to him than the straight leg and arm positions. She asked if he disliked tummy time. I said, "Yes. He hates it." She wants us to have him do it, even if it is only for a few seconds here and there. She said that babies muscular development begins with the head and then goes to the torso and then to the legs. She decided not to play with Henry too much during this visit. But she did put him on his tummy. He did much better than she had anticipated. She looked rather impressed with his ability to hold his head up while on his stomach. We'll continue working on tummy time at home. We were very happy with our visit with Dr. Tsai. This is the kind of attention to detail that we've been craving.

My mom was at our place when we came back home. She helped with Henry from 3:30PM to 6:30PM. We watched Oprah today. It was on autism. Jenny McCarthy was the guest. She has written a book on her experiences with her son, who has autism. His autism symptoms appeared when he was about 2 (incidentally after his MMR shot). It was an interesting interview. She pleaded to doctors to take the time to listen to mothers. She felt that doctors often don't listen and take a one-size fits all approach to medicine. I could certainly relate to that. In the NICU, the nurses and doctors would say that "Every baby is different." But it didn't seem like they did much tailoring to these differences when it came to treatments. Jenny McCarthy talked about how children with autism can learn, but their wiring is different from other children. She's worked hard to find different learning strategies that work for her son. For example, he didn't understand how to play ball. She'd throw a ball at him, and it would just bounce off him. She and one of his therapists videotaped her playing catch with the therapist. They showed the video to her son, and then he got the concept and was able to play ball with her after that. That is certainly something to keep in mind with Henry. Among other things, Henry is at increased risk for autism because of his extreme preemie status. Because he didn't have the comfort of the womb during the last trimester, the wiring of his brain is bound to be different than typical children. Many micro-preemies, at the very least, end up having ADHD (attention deficit), which is often attributed to the unique wiring of their brains caused by being exposed to sights, sounds, and overstimulation at such an early gestational age.

Jeff and I took Henry for a walk at dusk. I held Henry this time. He was good, but he got annoyed about halfway through the walk because he decided it was time to eat. When we got back, my dad had arrived and was ready to feed and hold Henry. Jeff went to sleep around 8:15PM. I got him up around 1AM, so that I could pump, clean up the kitchen, and write this blog entry. Henry did very well on eating. His Tuesday total was 596 mls. He took a deep nap on my dad's chest. He ate and slept on me for a while. And, he ate and slept for Jeff. His sleep is certainly getting better. He might exceed the four hour sleep total today! Wouldn't that be great. He's eating right now. Hopefully, he'll get in an hour nap during Jeff's shift. That's all for now.

Henry's New Coordination Skills

We didn't get much sleep last night. I took the night shift. Jeff helped me hook up Henry to the apnea monitor before he went to bed. As I fed Henry, the alarm went off. He had a short bout of apnea. I sat up as soon as I heard the alarm, and it stopped. Either Henry got out of the apnea spell because I moved (which stimulated him) or he just got out of it himself. Impossible to tell what did it. At least it only lasted a short amount of time. Henry seemed like he was going to sleep well, so I ventured into our bedroom to put him in his crib. I managed to get him in the Danny Sling as the sling is intended to be used. We had to modify it until last night because of Henry's petite size. Henry got restless almost immediately. Jeff got up when I went to get Henry a bottle. Marley stole Jeff's spot in bed within five seconds. It's pretty clear that Jeff and I work in the household but don't really run it. The animals pretty much call the shots. Later, Jeff and I switched, and I got to sleep for an hour.

We went to Sonora Quest Laboratories this morning for Henry's thyroid and genetic screenings. For some reason, they couldn't use the heal method for the tests. They needed a vein. The nurse was conscientious. She got a second opinion about where the best vein was in his arm before sticking Henry with the needle. Unfortunately, that vein imploded. So he was stuck a second time. He cooed and flirted with the nurses prior to being needled. The nurses commented on how vocal he is. He wasn't crying at this point. He was cooing and babbling. He cried of course once the needle went into his arm. Hate hearing him cry. Needles and his cry provoke too many NICU flashbacks that I'd rather forget. He has developed the cutest pout when he's unhappy. Jeff called him Beaker the other night because his mouth curves much like the Muppet.

Grandpa Kenski was home when we came back to the house. He held Henry for the rest of the morning. Grandma Kenski came for the afternoon shift. Jeff weighed him at 6 lbs 12.5 ozs. It is good to know that he can still gain an ounce a day without being on the Reglan. We'll continue to monitor his weight closely. Henry is 20 weeks old today (or 5 weeks 2 days age corrected).

We put Henry in his Pack 'N Play bassinet. And, he showed off his coordination skills. We've noticed that Henry has discovered his hands. He has been brining them together purposefully. He has been batting at his bottle for a while, but it is often hard to tell what's intentional movement and what's not. Today, he was batting at his toy horse Clip Clop. His movements were quite intentional. I've added video for your viewing pleasure.

Rough Morning, Calm Afternoon

We went for a walk yesterday (Saturday) evening around sunset. It sprinkled a little bit on our way back. It was very light. Jeff covered Henry with his hat. We ran into a bull snake on our excursion. We haven't seen many snakes this year. This is the second bull make sighting in the last week. They're OK as far as snakes go. We've heard that they keep the rattlers away.








I can't remember what happened last night. It must not have been particularly eventful. I think that my dad came in the evening. Jeff took the first shift, and I took the second.

This morning was rough. Henry vomited quite a bit. I long for the days of small bouts of spit up. He doused me thoroughly after my shower. Again, this is vomit, not spit up, which is concerning, especially with Henry being so tiny (tiny even for his "corrected age").








We weighed him at 6 lbs 11.5 ozs. He's trending in the right direction. We decided to cut out his Reglan, or rather the generic form of Reglan that he takes. It is a motility drug that makes the stomach empty more quickly than it otherwise would. Reglan is most effective when you give it to the baby 15 minutes before feeding (under an assumption that babies feed every 3-4 hours). Henry feeds every hour, meaning that Reglan has never been as effective as it should be. Plus, there are many side effects. For Henry, those side effects are irritability (yes, babies are irritable but Henry's irritability is different from "normal" baby fussiness) and sleeplessness (yes, babies don't sleep like their parents would like them too, but Henry has literally gone for days without sleep and his sleep has never been deep).

On Friday, when we went to my parents, we ended up skipping his dose of Reglan. We discovered that he slept much better and was generally calmer than he had been for weeks. Henry had some deep sleep on Saturday without the Reglan. My dad commented on Henry's sleeping in the evening. We're going to see if Henry can gain weight without the Reglan. He hasn't eaten quite as much the last two days. On the other hand, he's actually sleeping. Sleep is crucial for brain development. And, if he's sleeping, he might not need quite so much food to sustain him. I plan to call his pediatrician tomorrow to let him know about the Reglan effects. So far, we think that the side effects outweigh the benefits of Reglan (which again aren't that great with Henry eating all of the time).

We spent the afternoon and evening at my parents. Jeff and I passed out, while they took care of Henry. Jeff got up to go on a walk with Henry around my parents' neighborhood and then had dinner. I continued to sleep. I think that they were having pizza, which was no loss for me considering I wouldn't have been to eat it anyway (can't have the cheese b/c it's a dairy product). I need sleep more than anything else. My mom said that Henry had some small spit ups but no vomiting, which was good news.

Jeff and Henry are currently snoozing in the living room. I think that I'm going to wake Jeff up and do a Henry shift change so that Jeff can get some sleep in a bed. Tomorrow, we're taking Henry to the blood lab so that he can have his thyroid tested and have his genetic screening redone.

A Trip to Grandma and Grandpa's House

Thursday night was a little rough. My dad held Henry in the evening, until about 10:30PM. Jeff took the first sleeping shift. I ended up screaming for Jeff at some point because a huge scorpion came crawling out of the entertainment center in the living room. Took a while for Jeff to find it. When Jeff arrived, I wasn't very articulate about where it was. In my shock at seeing a small lobster-like creature in my living room, I had forgotten the word "speakers," which is where the scorpion had crawled. Jeff had to do some moving of equipment but managed to track it down and killed it with a flashlight. I felt badly that I had to disturb Jeff's sleep time. I tried to hang on until 2AM before getting Jeff up again. By that time, I realized that my cognitive capacities were becoming somewhat impaired. Mind you, I don't need much sleep. Didn't sleep much in graduate school. Can go for two months on 3.5 hours sleep per night. My body was (and still is) really exhausted. I hadn't slept in 25 hours, was completely exhausted, and ended up falling in the kitchen (my legs buckled from under me). I went to sleep around 2:30 or 3AM. I think that I got about four hours of much needed sleep. We took Henry for a walk in the morning. He sacked out for most of it.

I took care of Henry in the morning, while Jeff worked. Got a call from nurse Michael. He'd left a message at Dr. Bianchi's office on Wednesday, asking if the doctor wanted to extend Henry's home nursing care, otherwise Friday would be his last day visiting Henry. He had to get the extension approved through Schaller Anderson. Well, the doctor's office never returned his call, so he assumed that Friday would be the last home nurse visit. I called the doctor's office and left a message saying that this was a timely matter and that no one had returned the home nurse's call. Argh. Does one have to handle every single aspect of medical care one's self?

Nurse Michael came around 11AM. Henry's pulse-ox was fine...mid 90s. His weight had increased to 6 lbs 10.5 ozs. Michael noticed that we bought a baby scale. He did a comparison and got the same results on our scale.

Dr. Bianchi called to say that he received a letter from the state about Henry's thyroid test that was done when he was born. It showed that he had low thyroid levels. He asked me what they'd done about it in the NICU, because it wasn't on the NICU papers he'd received. "Nothing to my knowledge," I answered. So, we have to take Henry into a lab to get some blood work done again. Great. One more thing to worry about. I talked to Dr. Bianchi about the home nursing. He's going to extend it a month and then re-evaluate. The nurse will come once a week, instead of twice a week though.

In the afternoon, we went to Grandma and Grandpa's house. Patti, who comes twice a month to do some cleaning, was coming over in the afternoon, and I didn't want Henry to be around the harsh chemical smells from the cleaners. It's one of the things that they suggested you avoid if your child has BPD (chronic lung disease). Jeff dropped Henry and I off.

Yesterday was my mom's birthday. She got to celebrate it by holding Henry in the afternoon. My parents have three dogs (Schroeder, Indiana, and Ramses). Schroeder and Indiana were incredibly interested in the baby. They got concerned every time that Henry cried, which meant that they were more or less chronically concerned throughout the afternoon. Indiana seemed particularly taken with Henry. We've nicked named Indiana "Nana." I slept for a couple hours. Jeff brought our dogs over (they love going to the grandparents' house) in the evening. My sister and brother-in-law came over. That was nice. It was a last minute get-together, so we didn't have cake. That will have to wait until next time. Henry did very well all in all. At one point, he became agitated. There were too many voices talking at once, and he isn't used to that yet. Grandma took him to the back and settled him down. Then, I took him to his room (my old room is now Henry's room) and nursed him for a little while. Around 10:30PM, I handed Henry off to my mom and went back to Henry's room to take a nap. We left around 12:30AM. Jeff and I managed to get Henry and the dogs into the car without too much problem.

Because I had slept, it was Jeff's turn to sleep. We put the apnea monitor on Henry before Jeff went to bed. I did get a little bit of sleep with Henry laying on my chest. Got Jeff up around 7:15AM. Henry helped us take the dogs for a walk. We weighed Henry at 6 lbs 11 ozs after the walk. That was good, considering that he didn't eat much yesterday (in comparison to the previous three days).

And now, the cycle begins again.

My mom has just arrived. So I'm going to go take a shower and take a nap while I can.

Walking Around the Neighborhood

After I took an hour and a half nap last night, Jeff and I gave Henry a bath, which went well. Henry didn't protest, which was a nice change. I stayed up with Henry last night. He wanted to eat every hour on the hour. I got Jeff up around 5AM. I had intended to get some sleep, but it didn't work out that way.

We took Henry on the morning dog walk around the neighborhood. He seemed to like it. We ran into one of our neighbors, Janice, who lives across the street from us. We had to explain that we couldn't let people too close to Henry, because of his delicate immune system. She was good about it and stayed several feet back. The oxygen tank strapped to Jeff's back was a pretty good indicator that Henry has some medical issues that he's dealing with. It is kind of sad to think that we may have to wait up to two years before we can do normal things, like show Henry off to friends and neighbors or go shopping with him. It may be sooner than two years. If we're lucky, we can ease up a bit if his lungs have healed and once RSV season is over (October through March). But many kids with chronic lung disease have to be careful for two years.

We weighed Henry this morning; he weighs somewhere between 6 lbs 8 ozs and 6 lbs 8.5 ozs. It was difficult to tell, because Henry would not lie still on the scale. Given that he had such a big gain yesterday, we weren't surprised that he pretty much stayed the same. He's still doing quite well overall in weight gain for the week.

My mom visited Henry around noon. She took of him until 1:45PM. This allowed me to get lunch and put some things away.

Henry ate and slept throughout the afternoon.

We took Henry out and about again this evening around sun down. When we came back, Jeff put Henry in his Pack 'N Play. Our cat Jackson decided to get in on the action by jumping on Jeff's back.

Little Piggy

Henry didn't sleep much last night. Jeff went to bed around 9:30PM. I got him up at 2:30AM. I ended up doing odds and ends around the house until 4:30AM. It is amazing how many dishes we go through in a given day. Around 4AM, I decided to cook Jeff some breakfast. It was a little early for our normal breakfast, but these days, we have to be a bit flexible with our schedule. I got a couple of hours of sleep before Jeff handed Henry off to me so that he could get to work. We gave Henry his Prevacid around 7:30AM. He spit up most of it, so we don't think that it did a lot of good.

Grandpa Kenski held Henry from 8-9:45AM. That allowed me to do exciting things like take a shower, do some more dishes, etc. Henry drank 95 mls during that time. My dad certainly has the touch getting food down Henry. And, Henry doesn't seem to vomit much around my dad.

Jeff weighed Henry at 6 lbs 8 ozs. That's a 2.5 oz increase over yesterday's weight. We were stunned. We are trying to temper our enthusiasm, keeping in mind that he may not gain weight tomorrow, considering that today's gain was huge.

I tried giving Henry a massage. He wasn't in the mood. I made him do a few minutes of tummy time, but he wasn't in the mood for that either.

My mom came around 12:30PM. Henry didn't sleep much this afternoon. Jeff and I made a big step by leaving the house together, while Henry was under my mom's care. This is the first time that we've left him at the same time. We went to Babies R Us to buy some baby toys. These are things that we would have gotten this summer when we assumed that we'd have time to put his nursery together. Henry has become increasingly interested in his environment. We think that he sometimes gets bored, so we decided that it was time to buy him some entertainment. We bought several toys that make noises when you shake them and two mirrors.

Henry ate quite a bit in our absence. He was rather fussy as my mom left. We wanted to take him for a walk, but he was too wound up. I ended up nursing him for a while. Most of the time, he prefers the bottle to the breast. But every once in a while, he really wants to nurse. As I said a long time ago, I don't think that he has suffered from so-called "nipple confusion." He does, however, have strong preferences. Sometimes it is for the bottle. Sometimes it is for the breast. Unfortunately, we aren't good at reading his mind, so feeding him involves some trial and error. Like yesterday, he is eating in record amounts. With 4 hours left in the day, he has already consumed 547 mls. He's become quite the little piggy.

He still vomits, but the amount is less substantial than usual. I wouldn't quite call it normal baby spit up yet, but at least it is trending toward that direction.

Henry is currently sacked out on his daddy's lap. Once he does another feeding, we are going to attempt a bath tonight. He very much needs one.

A Record Breaking Day on the Food Front

Henry had a good night last night. Jeff moved the apnea monitor out to the living room. He was able to hook Henry to the monitor and put him in his Pack 'N Play bassinet for a little while. Jeff was also able to sleep in the couch with Henry, because he had the monitor on him. Jeff took care of Henry last night after I returned from school. Several students had questions after class, so I was late returning home. And, I got a ticket for supposedly speeding on one of the frontage roads and crossing a solid line. I do remember crossing the solid line. I was in the lane that was about to get on the highway, didn't want to be on the highway, and got into the frontage road lane at the last minute, which wasn't a problem because I was the only one on the frontage road. The cop spotted me from the highway. Ugh. I almost never speed, so I was surprised at that. In fact, I'm one of those people who frustrates others by chronically driving about 5 mph under the speed limit. The cop took 25 minutes to write out the darn ticket. I just wanted to get home and feed Henry, because I knew the milk supply at home was running low.

This morning, I weighed Henry at 6 lbs 5.5 ozs. It was after a so-called "blow out," which wasn't fun to clean up. Jeff had been holding Henry. I went to pick up Henry and felt something wet as I lifted Henry from Jeff's lap. But the good news is that Henry was weighed post-blow out, so the weight increase is probably real.

Henry spent the day eating and eating and eating. He has been a bottomless pit today. The day isn't over yet, and he has already obliterated his previous daily consumption record of 565 mls. Lately, he's been eating in the high 400s mls each day. But today, he has consumed 642 mls by 9:30PM as I write this blog entry. That's a huge increase from his average.

My dad visited this morning, and my mom took care of Henry this afternoon while I slept. My dad came back this evening. Henry is currently snoozing on Grandpa.

Henry in the Pack 'N Play

We had a great afternoon with Henry yesterday. About 45 minutes after Henry had eaten, I decided to put Henry in his Pack 'N Play, which has a bassinet feature. We have been careful to keep Henry upright for at least 30 minutes after he eats. Even this measure often doesn't prevent his reflux from getting the better of him. For once, he didn't seem particularly hungry at the 45 minute mark. So I tempted fate and put him in the bassinet, which is flat. We are a little concerned that Henry has only had primarily two experiences...being held and being in the Danny Sling. I want Henry to have the chance to do normal things, like kick up his toes and wiggle around. Henry seemed to enjoy the Pack 'N Play. He kicked his legs around and stared at the objects over his ahead for about 40 minutes. This was a huge relief for us, because it means that we will be able to put him down now, without having to get someone to hold him at all times. We didn't have the monitor on him, so someone has to stay nearby. Nevertheless, we felt like yesterday was a big step for Henry.









The monitor did not work again last night. I reread the manual. Did everything I could. I ended up calling the company who put me through to one of their techs who was on-call. He didn't have a spare apnea monitor in his van, but he said he could drive into town and pick one up and bring it over. I said that we could wait until morning. We live on a dirt road in the boonies, and it would be really hard for someone to find our place in the dark. The nearest stop light is 3 miles away from our house. I said that we'd stay up with Henry, which is what we did. I slept from 12:30AM to 3AM. Jeff slept from 3:30AM to 6AM. Henry snoozed for the most part throughout the night.

I'm posting some pictures of the road that we live on, which may give our friends and family who haven't seen our house some sense of why I didn't force the nice tech guy to the house at midnight. These pictures are from the walk that I took with our dogs yesterday evening.








I gave Henry a massage this morning. It went well. He's still a little hesitant with the arms, but he's getting better. He also tolerated some tummy time this morning without breaking into tears, which was good. He managed to prop himself up on his elbows at one point, which surprised me. He didn't last long, but every little bit of tummy time exercise is good for him.

The tech guy came this morning and replaced the monitor and cable. I think that it was a faulty cable that was the problem.

Grandpa Kenski came at 9AM to hold Henry. Nurse Michael came around 11AM. No change in Henry's weight. He's still 6 lbs 4 ozs. He took Henry's pulse-ox. He was going to write it down as 95%, but I pointed out that it was 88% for a good deal of the time. Again, I'm not sure why everyone always wants to write down the rosiest picture of the situation. I advocate for taking the conservative approach (what is the worst case scenario here). I pointed out that if Henry is spending time in the high 80s, the pulmonologists need to know because they'd probably be less inclined to remove his oxygen support. Believe me, I really want Henry to get rid of the cannula. But if he needs it, then he needs it. And the high 80s, while not bad, are nothing to get excited about.

I wasn't feeling well this afternoon. My mom accompanied Jeff to Dr. Cosentino's office for the hernia surgery follow-up. The doctor said that there's still a little bit of fluid in the area, but that's normal. All in all, the area looks good. The appointment was for 2:30PM. My mom said that they were in the car by 2:33PM. I felt guilty about not going, but of the appointments to miss, I knew that he was going to be fine. His scars have healed quite well.

I'm off to school to teach my three hour research methods class. My mom is with Henry now while Jeff gets some work done.

Henry's First Eagles Game

Jeff took the night shift last night. Unfortunately, the apnea monitor isn't working, so one of us has to stay up while the other one gets some sleep. We both tried fixing it (e.g., checking the leads, cleaning the leads, putting on new leads, checking all connections into the monitor, etc.). Every time we start it up, it starts beeping with the "loose connection" light on. We are going to try to fix it again today, but I think we need a new monitor altogether, which means that one of us won't get sleep again tonight.

Jeff went to bed around 6AM, but I got him up at 9:45AM, because the Eagles were playing their first game of the season. My dad came this morning around 8AM. He held Henry for the most part, while Jeff relaxed a little bit on the couch (perhaps "relaxed" isn't the right word; I've never known Jeff to be particularly relaxed while watching the Eagles). Henry ate and slept through most of the game.

At one point, I put Henry on the floor to give him a massage. But he was hungry again...he'd already eaten quite a bit. At this rate, he'll break his record on amount of breast milk consumed over the course of a day. The massage only lasted about three minutes. I flipped him on his tummy before I went to get him a bottle. He managed to roll over onto his back twice! He also did this for Jeff night before last. This wasn't the first time he had rolled over; but it was the first time that he had done this at home. He did it in mid-June in his isolette. While in the NICU, he almost always was nested in blankets, which made it difficult for him to move around a lot. We are excited that he is rolling over again. He also continues to have impressive neck strength. The first time that he picked up his head all of the way was June 8 (or minus 9.5 weeks to gestational term). Moving his head around to look at things is easy for him. We just want him to keep up the great progress. I forgot to mention yesterday that Henry was 4-weeks old (gestationally). We go by his "corrected" age when looking at developmental milestones. From what I'm reading, he is doing fine developmentally so far. We have an appointment at the developmental clinic next week.

Jeff weighed Henry this morning. He was 6 lbs 4 ozs. That's a 2 oz gain over yesterday!

Finding the New Normal

Nurse Michael stopped by yesterday. He's going to consult with Dr. Bianchi next week about whether or not the nurse visits are necessary. He has to get the OK from the doctor to keep the visits going because of insurance concerns. He weighed Henry at 6 lbs 1.5 ozs. Henry's pulse-ox levels weren't as high as they had been previously. They ranged from about 91% to 95%. That's not bad exactly. But when he first came home, he was consistently around 98%.

The other day at Dr. Bianch's office, the nurse measured it at 95%. It took her forever to get that because the pulse-ox device that they have wasn't meant for preemies. Frankly, I wasn't convinced that 95% was accurate. The monitor hung around 87% several times. She just took the best number given. I don't understand why medical professionals do that. For example, when they were taking my blood pressure in the hospital, it was always high until they had me lay down for 15 minutes and then took it. I thought this was a rather stupid measurement technique because I had no intentions of laying down all of the time (e.g., I had to stand up to walk to the NICU).

Both of my parents took turns with Henry yesterday. I don't think that there's really a whole lot to report on that front. I think that we all agree that my dad has the most success getting food down Henry and having it stay down. Henry didn't vomit as much as usual yesterday.

I didn't sleep last night. Jeff got most of the Prevacid down Henry. Some of it ran out again, but Jeff got more in him than I did the night before. Jeff tried to put Henry on the monitors, but they weren't picking up Henry's heart or breathing. By inspection, Henry was clearly breathing, so it was an equipment malfunction. I held him through most of the night. I got Jeff up around 4:30AM, because Henry was running out of food and I needed to pump. Then, Henry needed food and medicine, so I stayed up.

Jeff found another scorpion in the house this morning. I'm not happy about that. David, our pest control guy, came by on Wednesday. Sometimes that stirs things up for a few days after his visit. I hate scorpions, especially in the house. Yesterday, we found what might be evidence of termites in our bathroom. Yuck!

We took Henry for a walk with the dogs this morning. Instead of the Baby Bjorn, I held Henry in a sling. It was strange because Henry was at the level of my stomach. I couldn't help but thinking that he was supposed to be in my womb at about the size he is now. The last time I had held Henry for the walk that we took this morning was on the morning of April 30, the day he was born. Jeff was working, so I took the dogs for a walk that morning up our street. I can remember my vision going a little blurry on the return to our driveway. But at that time, I had no idea that I'd be delivering Henry less than 10 hours later.

I fed Henry when we got back from the walk this morning. Gave him a massage. He did really well with his massage yesterday. Today was OK. He's great with his legs, but he's tentative about his arms being touched. He has several scars from the PIC lines in his arms (his right side especially). I can't exactly blame him for not wanting to be messed with.

Around 10AM, I was ready to collapse, so Jeff took Henry while I took a nap. He weighed him in my absence. 6 lbs 2 ozs!

I got up around 2:20PM, just in time to see my dad for a little bit before he and my mom switched. Henry is with my mom now. I'm about to get some school work done. Jeff is organizing some of the huge piles of mail that we ignored while in the NICU. We are backlogged on some household duties. Hopefully, over the next couple of weeks, we'll manage to get the household back in some kind of order and figure out what our new "normal" is going to be.