Max Isaac L's online diary (October 1994)


This diary is pulled together from updates that my dad sent to his friends about my progress. Don't just read --- send him a note!

The entries here are arranged from most recent to least recent. That way you can find out the latest news easily!

Saturday, October 29th

We just had a fun time with Max. He was playing with a little activity set that Lisa's cousin gave us. It was the first time we've seen him really physically interact with something.

Sorry for the slow update. I've been a little run down what with Max being home and all. He's doing very well and we're now pretty adjusted to each other. Lisa's been amazing. Who would've known she had all this latent Mommy instinct?

We'll be seeing his peditrician about once a week for awhile to make sure Max is gaining weight. We also have appointments with various specialists (cardiologist, opthomologist, developmental) to monitor Max's various special conditions. But he is showing every sign of being an extremely good baby so we're trying to enjoy him as best we can.

It feels like a totally new beginning. It's as if the time in the hospital never happened (sort of). I think we're dealing ok. We're both very very happy to have him at home and the little challenges will be tamed eventually (assuming I don't die of exhaustion). Lisa's been amazing. Her Mommy-skills are very impressive, I don't know where she's been hiding them. In addition to being a patient and tireless caregiver, she absolutely loves being with him and seems to be helping him develop at an incredible pace.

Friday, October 28th

Max is home! I can't help thinking that it was much easier on us when he was in the hospital. Seriously, though. It's absolutely wonderful having him home. He's running us ragged by sleeping when we're awake and crying when we're sleeping. He is eating ok but he only takes a little bit of food at each feeding so he seems to be constantly hungry. He came home the day before his due date (Monday) so he's basically acting like a newborn even though he's three months old. So his ``adjusted age'' (as the developmental people call it) is still only a few days now.

Today we've started to pick up on a few more of his signals and that might help make things easier. We discovered that he has a different behavior when he's hungry than when he just wants to suck on something. We had been feeding him whenever he looked hungry with the result that he was never hungry enough to eat a whole meal. Hopefully now he'll take more, less often.

Another thing that made today special was that there were two other sets of parents that we were close to in the Special Care Nursery and the last of their babies went home today. So we really are into the next phase now.

Anyway, it's only been a few days but were exhausted. But when I see Lisa holding Max I get so happy have to giggle. We really are a little family...

more...

The nurses visit was ok. Lisa said that the nurse thought that Max was very smart. The nurse also gave her pointers on feeding and so forth.

We've also been to Dr B's (the pediatrician's). He said that Max looks great and that he's ``one for the record books'' in that Dr. B didn't think Max would make it when he first met us in the hospital (a day or so after Max was born). Anyway, he seems pleased and impressed with Max's progress so far. He said we should worry about Max getting a cold (which would prevent him from eating) and that he should gain about an ounce a day (I don't think he's doing that).

We're holding up fair to middling. There are many, many demands on our time. We're getting advice from lots of people and I'm not sure it's helping at all. I'm really not looking for help --- I just wish things were easier right now.

Max is feeding well, more or less. The two issues seem to be: (1) He doesn't burp well. The result is that he gets an air bubble and that makes him want to stop eating until it's cleared out. But since he's so hard to burp, the whole meal process stalls at that point. And (2) for a few days he seemed to want to ``graze'' in that he would eat for a few minutes and then sleep for an hour and then repeat. I think he's getting enough food that way but it's hell on us.

I'm pretty sure Max feels the change in environment. I think it's a positive change but it's one that he's still adjusting to.

Friday, October 21st

He hit 1700g today (3 3/4 lbs) and he's keeping it real close (our goal is for him to hit 1800g on Monday or Tuesday and come home Tuesday). We learned last night that he has ``Stage 1 ROP'' where ROP stands for retinopathy of prematurity. Literally, it means that he has a problem with his retina due to the fact that he was born early. The problem is that there are not enough blood vessels in one part of his eye. The eye doctor said that it's very common and almost always clears itself up in a matter of weeks. And even if it does get more serious, his would only affect peripheral vision and the surgical treatment is usually simple and successful. Still, it would be nice if these little problems stopped accumulating on us/him.

Monday, October 17th

I skated around my driveway on Saturday. By the way, I have seen rollerblades for toddlers (though not preemies). I think Max will be very good at it. Actually, right now he has a problem keeping his feet from pointing outward:
		  o
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so skating is probably not in the cards for awhile. (I'll try to make this a drawing in the web diary). He'll need a little physical therapy but it shouldn't be too major.

I've begun telling the nurses that we're taking Max home next Tuesday. Maybe if I say it enough times and make it sound like I know what I'm talking about, they'll think someone official told them and we'll be ready to go early next week. We're signed up for the ``discharge class'' and we're going to sign up for the CPR refresher. Those are the last few things we need to do. Max, meanwhile, has had the temperature in his isolette turned down to see if he can keep himself warm. Aside from weight, that's his last hurdle unless the doctors choose to correct surgically some of his physical problems before we leave. He hit 1600g (3 1/2 pounds!) today. He is still basically on track for hitting 1800g on his due date (next Tuesday). He's actually a tiny bit ahead but the four day average is showing a slowing down. I predict a photo finish.

Sunday, October 16th

Max is on the threshold of 3 1/2 pounds and he is right on track for coming home at the beginning of next week. They've changed his feeding schedule so that he eats every 4 hours instead of every 3. In addition, he gets to eat as much as he wants when he does eat. So he should get about the same amount of food but it just seems to be much more in line with his preferences. Three hours was just too soon between feeds and occassionally he seems to want to eat way more than the 28cc's he was given. His room is almost completely ready now. Ummm, except that the furniture still isn't here. Both of us have started to get stressed out about whether we'll be completely ready when he gets here. Each night we both dream about him being home. The dreams are good but we are always messing something up in them. Interesting, I think.

Thursday, October 13th

Max Isaac hit 1500g (about 3 lb, 5 oz) today which is an important landmark in neonatology circles. Normally he'd now be allowed to start sucking on a nipple while being fed through a tube. Max, little overachiever that he is, has actually been sucking on a nipple to feed himself for a few weeks now. Most of the doctors agree that he'll probably be allowed home when he reaches 1800g (about 4 lb) and he should reach that weight on his due date, October 25th (just 12 days from now), according to my statistical predictions. We really can't wait. I have to say that I understand better the urge to CREATE that some men feel when their spouses are pregnant. I've been trying to make lots of stuff for Max. The latest is a children's book-style book called ``Max's Special Beginning'' that we'll give him so he knows what his early days were like. It'll probably be available through Max's web page in a week or so, if you're curious.

Tuesday, October 11th

Today Max tripled his birthweight (3 lb, 2 1/2 oz). Since you asked, his length at birth was 11.2 inches and his current length is roughly 14 inches. Why do people wonder about that?

Monday, October 10th

Max hit 3 pounds yesterday and he's doing great!

Saturday, October 8th

Here are some events from the last few days: (Separate note...)

I don't mind you showing Max off. In fact, Newsweek has a weekly column about cool things on the web and I sent them a reference to Max. They say they'll warn me before they print anything.

We're going out today with my mom to buy knicknacks like cloths and undershirts and so forth for when Max goes home. We finally picked out and ordered a crib comforter set. It's primary colors and it has cartoon vehicles driving around with the noises they make written in big letters. Slowly but surely things are coming together.

Max is still hovering just below 3 pounds. My prediction curve has him finally breaking 3 pounds on Tuesday. We'll see.

(Separate note...)

Max is doing very well. We're getting to feed him more often and I'm learning Dad stuff like how to burp him and change his diaper. It's been pretty fun. He enjoys playing with us with his little black and white flash cards. We're hoping he'll be able to come home in 3 weeks.

You ask why it is that women seem to know all about babies and preemies and related topics. From my experience in the hospital it's partly because other women tell them things. It has been very common for the two of us to be at Max's bedside and for a nurse to start telling Lisa all about what Max has been doing and good ways to change his diaper and all sorts of juicy tid-bits. I often have to insinuate myself into their conversation just to find out what's going on. So, at least right now, I think guys have to make a concerted effort to find out about babies. I think it's worth it though.

Wednesday, October 5th

He's up to 1325g (big jump) and he's doing very well. This means we are nearing the final countdown for bringing him home. Some people are concerned that he is small and fragile and that maybe we shouldn't be too anxious to bring him home with us. Sure he's small. But we've been taking him out of his isolette and playing with him for nearly a week now. We're a little nervous about learning to be parents but I don't think we're too frightened of caring for him in particular. In fact, he seems like a very good baby and no more fragile than anyone else.

Yesterday I successfully burped him for the first time. He was feeling kind of full and fussy when I was bottle feeding him so I gave him a few nice taps and he burped. He definitely seemed to feel better afterwards. See, I can learn this daddy-stuff.

The move to CCN is delayed until tomorrow at the earliest.

Monday, October 3rd

Today was pretty exciting for a couple of reasons. First of all, Max is doing incredibly well. He's still doing his two breast/bottle feedings a day and he seems to be getting better at it. It seems to depend mostly on whether or not he's awake. Tonight he was incredibly awake. He breastfed for 30 minutes and then took 25cc from a bottle and then acted like he was famished! He was chewing on his shirt and sucking on Lisa's finger and acting all angry that there was no more milk.

And aside from that, he looked so darn cute. We also got a picture of him with his friends Justin and Andrew both of whom will probably go home in the next week or so.

Then there's the whole CCN controversy. The CCN is the ``continuing care nursery'' (or ``convalescent care'', depending on which sign you believe). They also call it a ``level 2 nursery'' or a ``step-down nursery.'' It's basically the place they let babies grow if they are small but medically stable. Anyhow, last week people (nurses, social worker, supervisors) started dropping hints that they might like to send Max there.

So this morning, our social worker called to set up a time when Lisa and I could meet with her and the fellow to talk about moving Max to the CCN. This is a good sign and it would probably be great for Max but it would be very disruptive to us. We're familiar with the routine in the SCN (special care nursery/level 3 nursery/NICU/ICN/...) and we have made some very close friends there that we would miss a great deal. In particular, Max has had several primary nurses that have been caring for him since the very beginning. They would miss him and we would miss seeing them every day. They are an integral part of our support network.

So, fine, we'll think about moving Max to the CCN. Meanwhile, about 30 minutes after the social worker calls, we get a call from the intern in charge of Max. She tells us that they are about to move Max to the CCN and just wanted to let us know. Whoa! After several more phone calls, we were able to get them to delay the move until after our meeting tomorrow. Yow. We'll see what happens.

Meanwhile, medically, some interesting stuff has come up. He still has a clot in his right atrium as well as his hypospadius and hernias. Recently, they discovered that his bilirubin was slightly high so today they did an ultrasound of his liver and started some blood work. Apparently this is relatively normal and no one's too worried. All the tests have been normal so far. There is some link between small (for their age) babies that have received the intravenous feedings and elevated bilirubin. It usually resolves itself.

Then, as we were leaving tonight, the intern mentioned that the liver ultrasound revealed that Max has a kidney stone in each kidney. Hello! They don't seem too concerned about this either (there's been no clinical manifestations) but it is something they'll have to track.

So lots of stuff is still going on but all signs point to him coming home soon and healthy.

Sunday, October 2nd

The latest is that we're trying to get him to feed by mouth (instead of through a tube). So last night I gave him a bottle and, after an extended period of confusion, he figured it out and ate like a champ. The nurses were worried that the work of eating on his own would make him lose weight, but he actually gained 30g yesterday (he gains 20g on a good day) which brings him to a respectable 1220g (2 lb, 11 oz).