The entries here are arranged from most recent to least recent. That way you can find out the latest news easily!
His progress has surprised and pleased the nursery staff and I'm predicting that he'll be heavy enough by November 1st to come home. We still have a long way to go and once he gets home he'll need lots of special care to keep him from getting sick but the prognosis is excellent.
Those who have been keeping in touch, thank you for your thoughts. To people who have been reluctant to contact me, don't be afraid, he's doing very well and even if he wasn't I'd still want to hear from you. For those of you who have access to the World-wide Web/Mosaic, I have been collecting pictures and stories about Max at:
http://www.cs.brown.edu/people/mll/max
That night, one of his primary nurses (Maria) saw that he was lying around in his isolette looking around at everything. She decided that he looked a little bored and that he needed a change of scenery. She took out his IV and his nasal canula and then temporarily disconnected the two remaining monitors from his body and proceeded to take him on a ``date'' (as she called it). They walked around the nursery and she introduced Max to all the other doctors and nurses. Apparently, he loved it! He was looking around and seemed very excited.
When she got him back to his isolette, she left out the IV and the canula and reconnected only the oxygenation monitor and the heartrate monitor. This is basically the bare minimum in terms of wires that any baby in the nursery has. It's also the minimum number of wires that Max has ever had.
The next morning, Lisa visited him. She didn't know about his escapades from the night before because Maria wasn't on duty. It was time for his feeding (he's getting 20 cc of breastmilk/formula combination every 3 hours). Because Max is so small and premature, he has been getting his feedings through a small tube called a ``gavage'' from his mouth to his stomach. This eliminates any risk of him getting milk down the wrong pipe.
However, his nurse at the time, noticed that Max was very hungry and was eagerly sucking on his thumb. She decided that it might be a good time to let him try to drink milk on his own for a short stint. So she set up a modesty screen and told Lisa not to expect too much. But he was actually able to feed for 4 minutes! He was very good at it! Both mommy and baby seemed to benefit from the experience.
I was disappointed that I missed this special moment but another one came when I visited tonight. Maria was on duty again and asked whether we wanted to help Max get his very first bath! We stripped him down to his real birthday suit---no clothes, no diaper, not even any of the little stickers that hold the wires against his skin. He was so cute!
Maria put him into the bubbles under a warming light. He seemed a little surprised at first and flapped his arms around in a startled way. But then Maria rubbed his tummy with a washcloth and he relaxed and settled in. It looked like he really liked it. He had a tiny little expression of bliss on his face. It was so wonderful to see and I took lots of video of this special event.
Afterwards I got to dress him up in a comfy little outfit (we're told he's the best dressed preemie in the nursery) and then we wrapped him in a blanket and held him while he was fed the old way (gavage). He was pretty alert for awhile but slowly got warm and sleepy and drifted off. When his feeding was over, we put him back in his isolette, sang one last song and left for the night.
Ah.
His eyes are starting to look pretty brown now. It's still a little hard to see them because he hates to open his eyes in bright light and they still have greyish baby color, but it's certain now that he didn't get blue eyes (as if that was very likely). Meanwhile, his hair has thinned substantially probably in part from his head growing and in part because they shave patches occassionally to put in IV's.
It was tough not seeing him for a whole day but I'm very happy with how things are going.
So they are putting him back on food today. Last night, after he got the blood, he started fussing and pulled out his cpap prongs so the nurse left them out and put him back on the nasal canula. They've decreased his IV's a bit. The nurse said he's acting very hungry and is crying inconsolably to be fed again. So, although all the tests aren't back, he's acting like he's feeling much better.
As far as transfusions go, he is producing blood but very slowly. As you know, blood is produced in the bone marrow and he has a very small amount of marrow still. As he gets bigger, it'll get much better. Also, they take lots of blood from him for tests and so forth so it's hard for his little bones to keep up. I put together some information on Max's transfusion history so I can work out when we'll need more donors.
The tests for infections and pneumonia are still pending. However, I think everyone expects them to be negative now (i.e., no problems).
It's funny. Just last night we had a parents' meeting in the hospital in which a set of parents brought in their 9 month old baby girl who was born at 490g (very similar to Max's weight). She looks great but there were lots of problems along the way. The parents cautioned us to be prepared for lots of twists and turns and ups and downs as our baby grows and improves. I smiled and nodded in an understanding way but deep down I was thinking that Max would have no more problems. So anyway.
There is some good news today. Max has broken 1000g for this first time. His current weight is 1010g (2 lb, 3 oz). He seems really strong so hopefully this will be a tiny emotional dip in a massive positive trend. We'll see.
(Later that same day...)
Here's the update.
Lisa's visiting with Max right now. She said that Max doesn't seem like himself today. He is responding to her normally in terms of facial expressions and so forth, but he's moving less and he doesn't look right.
The doctors are working him up for ``sepsis.'' They did a lumbar puncture (like a spinal tap) to see if he has meningitis (brain infection). They tried a bladder tap to see if he has a urinary tract infection but apparently they weren't able to do it (after two attempts). He's out of his isolette and back on a warming table, presumedly to allow the doctors better access. He's NPO (no feeds) so they have put in more IV's to help him make up for lost fluids.
Scary but there's no obvious problem to be worried about yet.
Anyway, I wanted to give you a Max update. He's doing great! The big news is that today he hit 960g (2 lb, 2 oz) which is more than double his birthweight for the first time! Yesterday he hit 930g which was the first time he hit the 2 pound mark. I'm expecting the 1 kilogram mark to fall in the next few days.
In addition to his weight, his overall behavior has been getting more advanced and he seems to be progressing very nicely. Lisa and I are starting to learn about the different messages he sends us. We've know for awhile that he wriggles and cries a little when his diaper is wet. When I see him do this, I put one hand into each of the portals in the isolette and change his little diaper. That, invariably, makes him feel better.
We've learned a few other signals as well. The day before yesterday, we noticed that he was panting a little. His respiration rate was up to 110 breaths per minute and it didn't seem like a good thing. We certainly hadn't seen him act that way before. It turned out that he was overheated. The nurse took him out of his isolette and we held him in the air of the nursery until his temperature came back down. It wasn't a fever or anything, just that he was getting stuffy inside his little condominium.
Ever since he was born, we've been trying to sing to him regularly. Lately we noticed that he seems to give some indication of when he recognizes a song we've sung before. He scrunches up his little face, then raises his eyebrows, then stretches. At first, we thought he was uncomfortable but we notice that he doesn't seem to do this during songs he's never heard before, just the ``old favorites.''
And he still makes little smiling motions but not usually correlated with anything in particular. Oh, and yesterday he turned 7 weeks old and we bought him some new books to celebrate.
The weird weight on September 10th is pretty bizarre. The nurse suggested that it was actually an accumulation of poop (charming!). The fact that the number wasn't divisible by five seems to be a separate mystery. Apparently there are different scales they can use to measure Max and some have better accuracy than others. Or, perhaps, the two events are related and he just had a different nurse that night who used a different scheme for weighing him and perhaps that scheme involved Max holding onto some extra chunks of lead. Hard to know.
I was a bit worried about his weight the last day or so but it looks like he's moving again. They keep telling me that it's better to look week to week and not day to day.
Yesterday something very exciting happened. We timed our evening visit to coincide with the changing of his breathing prongs (CPAP). We hates the prongs and especially hates having them put back in after they've been taken out. It's one of the few events that makes him cry (another is having a wet diaper). We like to be there when his CPAP prongs are out, since we can see his tiny face free of tubes and tape.
So the nurse, who is one of Max's primary nurses, took out his tubes and cleaned him up and we held him for awhile. A little while later, she came back and announced that Max seemed to be ready to try breathing completely unassisted. So since then, all his tubes have been out and he's doing great. He looks adorable and his cheeks are almost all healed from the 6 weeks he spent with tape on them. We're very happy for him.
I guess the other big news from today is that (sorry for this) he had his first baby poop. Newborn poop (meconium) is very different stuff and now that he's actually eating breastmilk, he has moved on. I guess I'm excited just because it's another sign of his maturation.
Things are going very nicely. Lisa is doing well and has decided to take a leave of absence from work until January. As a result, she feels more relaxed about things lately. We are still expecting a few more unpleasant surprises from Max before he comes home but right now, things are going very well.
Anyway, after 6 weeks in the NICU, we're starting to wear down. Max is getting stronger and healthier, but we still need to wait well over a month before there's any chance of getting him home. I'm finding that very difficult. I'm starting to be able to see the light at the end of the tunnel and it's sinking in that it's quite a long tunnel. Some of the other parents we've been close to in the nursery are taking their babies home. We're happy for the babies but we will miss the support of their parents.
But we've been holding up pretty well and Max is doing very well so things will probably be great.
Meanwhile, I'm thinking of putting together a preemie glossary/FAQ
type of thing. Would you like to contribute? Also, if you have
access to the World Wide Web, I have some pictures of Max in
http://www.cs.brown.edu/people/mll/max-dir/max-page.html.
His due date was October 25th which makes him 33 weeks old gestationally. His size is that of a median 25-weeker (roughly a -3.46 month old baby). So he is 8 weeks smaller than his age. This gives the staff in the nursery a real kick because they look at him and think he's a 25-weeker (babies that young are very difficult to help). Max, on the other hand, is very robust and active and alert and it seems surprising coming from one so small.
I've spent lots of time trying to fit curves to his growth. The published growth curves that I've seen look mostly sigmoidal. You get what looks like good exponential growth in the beginning and then (in utero) the baby runs out of room so things slow down. I don't have good data on preemies though. They have to work harder but they have more room. I have his weights and also some standard birthweight statistics online if you want to play around with the numbers.
As I said, he is very responsive and everyone seems to think he has a nice personality. Most of the time he sleeps and grows. When he wakes up, he looks around calmly and alertly and makes very good eye contact. He has a good smile reflex but it seems to be mostly random when it happens. When the nurses change his breathing tubes, he puts up a fight with his arms and often cries briefly. But the crying ends when people leave him alone and he tends to look pretty content. He also cries and wriggles when he is wet but then calms down as soon as he is changed. He is definitely less of a grouch than his dad. I'm thinking he has a personality more like Lisa's.
In other news, they checked his eyes yesterday and he doesn't seem to have ``retinopathy of prematurity'' which is a standard preemie problem where the blood vessels on the retina develop irregularly. He seems to have jumped that hurdle without difficulty. And he has now been getting breastmilk for 2 days without problem. His doctors will probably consider increasing his feedings from the current 2 cc's every 4 hours schedule. And hopefully he'll be getting a little blood boost from his dad today. Fingers crossed.
The big news is that they started feeding him through a tube into his stomach today. He's being fed a whopping 2 cc's of breastmilk every 4 hours. The last time they fed him this way was two weeks ago and he got a terrible bellyache so they had to stop. He's grown a great deal in the past two weeks though so we're hoping that his belly has gotten more mature. So far, so good.
The other interesting occurrence from today was that he needed some more of my blood. This was especially strange because we had made special arrangements for my last donation (as well as my sister's) for the blood to be good for another two weeks. What happened to the blood? Apparently because of communication difficulties, the blood was thrown out. Bummer. Hopefully, the new batch will be held for a while longer.
The only other thing is that yesterday I noticed that his left thumb is a tiny bit malformed. He was born with a huge blister on it which burst and then scabbed. Now the dead tissue has regenerated but it looks a few sizes too small for his hand. There's a good chance (we're told) that it will grow back normally but we'll have to wait and see.
A few days ago, he gave us a major scare. We found out on Wednesday that the doctors suspect that he has a large-ish blood clot in the right atrium of his heart. We learned that it's probably not causing any immediate problems but that there is always a danger that it will leave the heart and lodge in tissue elsewhere (like the brain) and cause problems or that it will grow and begin to obstruct blood flow in the heart.
On Friday, we were told that a cardiologist looked at an echocardiogram from Max and thought that the clot might actually be a ``vegetation'' or roughly a huge ball of platelets and bacteria. All day Friday we tried to get the doctors and nurses to tell us what this might mean and whether it is a major problem. We only got vague, elusive answers and a sense that this was pretty dangerous and that everyone was scared for him. Of course, we were a mess.
Late that night, another cardiologist (who coincidentally will be Max's pediatrician when Max gets out of the hospital) repeated the scan and decided that it is almost certainly ``just'' a clot and that it in fact had already shrunk relative to the earlier scan. He told us it was very likely that it would continue to shrink over the next several months and cause no problems. Oy.
I thought you might get a kick out of this. The other day I was trying to make Lisa laugh by speaking to her in nonsense words. All of a sudden, she got a worried look on her face and said, ``You better not fail to teach Max to speak English.''
Now the downer. Wednesday we were told that the doctors found a blood clot in his heart. They now believe that it is actually a ``vegetation.'' They have been pretty vague about what this means so far but apparently it's a type of infection in which the bacteria get together and form a clump inside the heart. Hopefully, big doses of antibiotics for several months will knock it out but we don't really know. We're planning on meeting with his cardiologist tonight. Things got really scary, really fast.
In the interest of working without getting anything done, I've created a ``Max Page'' on the world wide web. Feel free to browse it. It has some pictures of Max and I'm working on getting his weight information in there as well. You can use that as a source of semi-up-to-date information but hopefully it won't take the place of asking me what's up now and then.
Now the downer. Yesterday we were told that the doctors strongly suspect that he has a blood clot in his heart. The presumed cause is the extra big IV line known as a ``perc line'' they were using to give him the nutrition that helped him grow so nicely. They took out the perc line and will continue to feed him at a slower rate through a regular IV. Hopefully the clot will dissolve on its own but there is a danger of it dislodging and then clogging up vessels elsewhere (like his brain). Apparently it's causing no problems where it is.