On our own.

Just a second ago, it was Monday, and Lewis came home. It's been quite a week. Most importantly, Lewis is doing well. He is gaining weight, sleeping pretty well and not being any more fussy than any other 2 month old kid, as far as we can tell. We've been incredibly busy learning to take proper care of him, to operate and maintain all his gear and making vast numbers of followup medical appointments and insurance phone calls.

Lewis routinely sleeps for several hours straight - his NG tube lets him sleep right through a feeding, but one of us has to be up to prepare him and set up the pump every 3 hours. Since we only have a couple of hours left till the next feeding, we're going to throw down a few bullet points, post a few unrepentantly cute photos and save anything more serious for a future post. Expect significant introspection and thoughts on the future of this medium at that time. (Or, more likely, just more pictures).

During this week, Lewis has:

• Met the nurses who will advise on Lewis' home care and help us with supplies at home
• Pulled out his NG tube, providing Mom & Dad the opportunity to hone our skills placing it (right after the nurse left, on his first night home)
• Had a long first visit with his pediatrician
• Peed on his grandma
• Been bathed a couple of times, but not lost his faux hawk (pics above and below)
• Been to the playground
• Gotten a second sore on his scar, but the surgeon isn't worried and we are caring for it at home

gratuitous nudie shot
Faux hawk
going to the playground

"Driver, take me home."

Home Sweet Home

Lewis came home this afternoon. We're so happy to have him home, but it's been a long day and there's still lots to do. It will take a while to learn to do all of Lewis' care efficiently. We'll try to post a better update later this week.

Happy Holidays. Jenn, Josh, Nate & Lewis

Countdown

Late last night, we found out that the culture taken from the sore on Lewis' scar a couple of days ago tested positive for staph. When we spoke to the nurse around midnight, they weren't sure yet whether it was anitibiotic resistant staph or not. Just in case, Lewis was put in "contact isolation". Staph on the skin isn't a big deal for healthier kids, but they have to be very careful that it doesn't spread around the NICU to kids with compromised immune systems. Luckily, it all turned out to be much ado about nothing. Contact isolation sounded scary, but it actually just means you wear a disposable gown and surgical gloves to handle the baby. A staph infection wouldn't have kept Lewis from coming home tomorrow either, assuming everything else goes smoothly. Still, it was a little difficult to take in, at first. By mid afternoon today, we learned that it wasn't the antibiotic resistant form of staph, so Lewis didn't need to be isolated. Nothing to see here, go on about your business...

With all this excitement, Nate didn't make it in to visit Noodles today, so we don't have any fun pictures. Everything else seems to be going well in preparation for tomorrow. There is a long list of stuff that parents need to complete in order to check a baby out of the NICU, but I think we finished the last of it today. (Reviewing how to measure and administer Lewis' meds and making sure we have all the right gear for his care at home).

Meantime, Lewis had a good day, isolated or not. He continues to tolerate the 30 minute feedings every 3 hours and he did well in physical therapy. He was kicking both legs and is showing some more range of motion in his arms. He's also looking to the left more readily. All these are hopeful signs and the therapist was quite pleased with his progress.

The PT was a nice followup to yesterday's meeting with the Neurologist. As mentioned yesterday, the results of the MRI were more positive than last time, but the overall prognosis is still very unclear. The neurologist thinks that Lewis is likely to have a significant level of movement disorder and is particularly concerned about his fine motor skills. Based on his examination, he felt that Lewis' problems are more acute in his arms than his legs and are not balanced side to side. His "best guess" for a diagnosis was "double hemiparetic cerebral palsy". This basically refers to movement disorders in the upper body. The level of severity can vary dramatically. At this point, we're taking all of the diagnoses with a grain of salt. The developmental pediatrician who examined Lewis a couple of weeks ago told us that his problems were much more severe in his legs and wasn't as concerned with his upper body. Ultimately, the diagnosis right now doesn't matter. The prescription is to do as much physical and speech therapy as possible and keep a close eye on Lewis' progress.

Tomorrow looks like it will be a big day - exciting and emotional in a lot of ways. Hopefully Lewis will be here to help us figure out what to say.

Bell Lap (?)

"Rooming in" at the hospital was a restful experience. For Lewis. Everything went well. Lewis fell asleep around midnight and slept through until we changed him at 6. Then he promptly fell back asleep for a couple of hours. He's now eating 100 ml over 30 minutes, every three hours. There is an upside to feeding through the NG tube - he doesn't need to wake up for feedings, even though we do.

Lewis had a hearing test when he came back to the NICU this morning. He wasn't very cooperative - he kept squirming around - but when they were able to administer the test properly, he passed just fine.

Jenn and I also met with the Neurologist again today. The short version is that the MRI looks better than last time. There are still lesions on the basal ganglia (the brain's input/output pathways for motor control) but they are less prominent than in the first MRI. The neurologist was much more positive, but still thinks it is very likely that Lewis will have some level of movement disorder. The neurologist and the developmental pediatrician seem to disagree (dramatically) on how/where the movement disorder may manifest itself. More on this when I have more time to post tomorrow.

It is looking more and more likely that Lewis will come home on Monday. We have spent much of today and yesterday learning to use equipment and buying supplies. We're both excited and scared - we can't wait to have him home, but we may not sleep a wink the first couple of days he's here. It'll be bittersweet to leave the NICU too - the team there has taken care of us nearly as much as Lewis for the last couple of months. With luck, Nate will visit Noodles tomorrow and we'll have some pictures...

Road Test Tomorrow

Lewis had a pretty uneventful day today. He had a couple of vaccination shots this afternoon, but most of the excitement related to all the things we have to get done before he can be released. Tomorrow night, Jenn and I are scheduled to stay over at the hospital with Lewis, in a room down the hall from the NICU. We'll take care of him overnight - running the feeding pump and giving him his meds and all. There's a phone in the room so we can call the NICU for help if we need it. Tonight, we had a training session for the portable "apnea monitor" that Lewis will be on at least part time when he comes home. It is a simpler version of the monitors that all babies in the NICU are on. It alarms when his heart rate or respiratory rate is outside a certain range. We'll test it out tomorrow night.

Lewis is handling his feedings well and they are keeping an eye on the infected stitch in his incision. If we don't post tomorrow night, you'll know why. We'll get back to you on Saturday.

Sixty Minute Man

Lewis has been taking his milk over the course of an hour since lunchtime today. So far, it is going well - he gets 90 ml of milk in an hour, then two hours off. Yesterday, he was on 1.5 hours. Other than that change, it was an uneventful day. Physical and speech therapy both went fine. No one seems to be concerned about the sore on Lewis' incision anymore. The bloodwork from yesterday came back okay and they have washed off the marker ring.

Somebody's Hungry!

One minor scare today, but everything seems to be on track. I visited Lewis very early this morning, before they sedated him for his MRI. When I arrived the resident told me that they were concerned about a red/raised area in his incision that had appeared overnight. It wasn't evident when he was given a bath late yesterday, but was evident this morning. They thought it might be cellulitis (a skin infection) or an abscess. They had drawn a ring around the spot with a marker, so that they could accurately assess whether it was getting larger (primitive, but effective). Long story short, the surgeon thinks it is a minor infection in one of the stitches and will go away on its own. They're keeping a close eye on Lewis, though, given his history of infection. They even left his IV in until this evening, just in case the docs wanted to run antibiotics.

Other than that, the day went pretty well. No problems putting in the IV and no problems with the MRI. We should know more about the results later this week. By this afternoon, Lewis was back on his regular feedings through the NG tube and the doctor decided to compress the time down to 90 ml over an hour and a half. Lewis even managed to fit in some physical therapy, which went well. He's moving his legs more and looking to the left more often. I just spoke with the nurse on tonight - it sounds like he's handling the faster feedings well. He also ate about 5 cc's of applesauce for Jenn today:)

Lewis was alert and in a good mood for much of the day, the infected stitch doesn't seem to be bothering him much, if at all.

The "H" Word

It all started yesterday, when the insurance case manager mentioned to Jenn that we should consider moving Lewis out of the NICU into the pediatric ward. The case manager gave us some not so convincing reasons that Lewis should be off in his own room with less medical care. In turn, I suggested that the case manager should also be in her own room with more veterinary care. Luckily, Jenn was more civil when she called the case manager back. Jenn said no. She reminded the case manager that the NICU doctors hadn't suggested that Lewis was ready for a step down. When they do, we'll consider it.

It turns out that the insurance folks hadn't mentioned this grand idea to the NICU team. (Stop me if you've heard this one before). Jenn told the nurse about their idea this morning. Then the nurse told the doctors about it during rounds. Then the doctors used the "H" word. Right there, in front of Lewis and everybody. We weren't there, but they told us about it later in the day. "Why should Lewis move and take days getting used to a whole new environment when he's likely to be home next week?" said the doctor.

So, that's today's big deal. We're cautiously optimistic, but a week is still a long time. Lewis pulled out his NG tube on me this evening, so I learned to put that back in - not as bad as you'd think. Other than that, Lewis is handling his condensed (two hours on, one hour off) feeds well. The docs are ready to speed it up again, but will hold off until the day after tomorrow. Tomorrow morning, Lewis will get an IV and be sedated briefly for his MRI. We're hoping they'll have an easy time getting the IV in, now that he's had a good break without being stuck.

Sunday Dinner

Family time and big eating for Lewis today. This afernoon he ate 5 ml of applesauce for Jenn and really seemed to enjoy it. Lewis' regular feeding schedule was compressed, too. He's now getting 90 ml of milk over 2 hours, with an hour off between feeds (as opposed to 30 ml/h continously, or 90 every 2.5 hours). That started about lunchtime today. The first couple of feedings on the new schedule have gone down well. Compressing the feeding schedule moves Lewis towards being able to take "bolus" feedings and potentially not requiring a pump to deliver milk on a continuous or semi-continous basis. (Bolus = all at once, more like when a baby drinks a bottle of milk).

More importantly, the new schedule means that Lewis is not attached to anything (except monitors), one hour out of each three. That lets us walk around with him, look out the window, even take him out to the waiting area, so that he can have more than one guest at at time.

The hips don't lie

Lewis didn't get his MRI today. They got him onto the papoose board, but he woke up on the way down there and he wouldn't calm down while he was strapped in. Apparently it is protocol to try to get a baby's MRI without a sedative. If that fails, then they sedate the baby. So, he'll be scanned another day, with something to make it a little less traumatic. Since this took so long, we didn't really have a chance to work with Lewis on his apple sauce-eating-skills.

The orthopedic surgery resident came by to check on Lewis' hips, based on the developmental pediatricians's concerns from a couple of days ago. We weren't there, but we're told that everything looked fine - the orthopedist didn't feel there was any reason to be concerned about Lewis' hips. No followup scheduled.

The rest of the day was uneventful. Lewis slept for hours this afternoon, and was able to calm himself down without being picked up at least a couple of times.

Applesauce on the side.

This afternoon, they started increasing the pace of Lewis' feeds. Just a little bit - 90 ml every 2.5 hours, then a half hour break each time. (In lieu of 30 ml/h continuous). He's had a couple rounds of that schedule and it seems to be going just fine. The docs also added a couple of teaspoons of applesauce 3 times a day. He seems to like the applesauce - the nurse we just spoke with said he ate straight from the little spoon and got it everywhere, but had fun.

During the day today, Lewis had a sonogram on his hips - the developemental pediatrician was worried about how stiff they are. We don't have the results yet. He's also scheduled for his next MRI tomorrow early afternoon. Depending on his mood, that may be a little trying, since they need to strap him to a papoose board.

Lewis was in a pretty good mood most of the day. When he got fussy, he was pretty easily consoled. It may be my imagination, but I think the rash was a little better too.

Don't be Rash

Lewis greeted Jenn, Susan and Raymond this morning with a wet crib. He had pulled out his feeding tube while no one was looking and soaked his crib with milk. (Susan and Raymond are Jenn's parents). Normally, we wouldn't be all that pleased, but suddenly, Lewis had no tubes attached. For the first time since the day he was born, Lewis had no IV, no feeding tube, no drains, no catheter or PICC. Jenn seized the moment.

Look Ma, no tubes!

Sans tubes, Lewis got cuddles all around, and a bath. Then the nurse put in a new tube. Lewis stayed awake and in a pretty good mood for his grandparents. When the speech therapist came, he ate a couple of ML's of applesauce. Applesauce is a little thicker and might be harder to swallow than milk, but the speech therapist thinks it will give him more time to react. He really seemed to enjoy it and he didn't cough. Afterwards, he sucked on Jenn's finger for a minute or two and promptly fell asleep.

When they returned from lunch, Lewis had pulled out his feeding tube again. This time they caught him quickly - the crib wasn't wet. With instruction from the nurse, Jenn put in a new naso-gastric tube herself!! This is something we'll eventually need to be able to do ourselves, so that's a great start.

Lewis is still suffering from a rash over much of his body. They aren't sure whether it is one rash that's spread, or multiple rashes. There are a couple of conjectures about the cause and they're treating his skin with various ointments, so we'll see what works.

Looking Left

All the news today is about speech therapy and physical therapy. Away from that, Lewis had a pretty low key day. He's getting more and more used to (and expectant of) walks around the ward and riding in the sling. Jenn had him staring out the window for a long time today too. I'm not sure what he can see at that distance, but he was calm.

The speech therapist tried Lewis on another small bottle (5 ml) again today. Once again, he coughed when it hit his throat, but did swallow about 3 ml. He doesn't seem to have things coordinated yet. The doctor and speech therapist think they may try him on some applesauce. on the theory that something thicker will give him a little more time to react. Later in the day, the nurse gave Lewis some tylenol from an eye dropper - in case he was still sore from yesterday - he got that down with no problem, so that's a good sign.

We've been worried about Lewis' strong preference for his right side. He favors looking right almost all the time. This isn't unusual for babies and can usually be fixed with physical therapy, but it was still a concern. Today we made some progress. I was able to get Lewis to move his eyes and turn his head to follow a rattling toy from right to left several times. Later in the afternoon, the physical therapist focused getting Lewis to look left during their session. She had some success too and was pleased with his progress.

After all that work today, Lewis has been pretty needy. He's tired, but he's also got a rash that may be bugging him. Tonight's nurse tells us they think it is eczema, they're treating it now. She also said Lewis was calm but wouldn't let her put him down - and that he's got the game all figured out and has them all wrapped around his finger. Nice to know he's getting plenty of attention when we're not there :)

And Now, Back to our Regularly Scheduled Program

When last we left our fearless hero, he was facing imminent circumcision without hope of pain meds. On today's episode, at the last moment (or maybe an hour or two beforehand) the benevolent Doctor on Call swoops in to suggest one last morphine dose. Lewis barely cries during the procedure and sleeps more or less all day afterwards.

The overnight nurse is probably in for a fussy baby when he wakes up, but the Mohel assures us that Lewis will not be in pain. He'll just be up all night...

Nothing else really happened today. Lewis stood up the speech therapist, but she says she understands. Stay tuned for tomorrow's episode.

Manic Monday

There was a lot going on today, some good, some not as good. Lewis was evaluated by a developmental pediatrician this morning. The Doctor was pleased with Lewis' alertness, he seems to be very interested in looking at faces and listening to voices. Lewis' eyes track well to the right, be he is still reluctant to turn his head or track to the left. The Doctor was also concerned with Lewis' hypertonicity (muscle stiffness) in the arms, legs and hips. She suggested an ultrasound of his hips and will follow up with Lewis in a couple of weeks to see how he is progressing.

On a more positive note, Lewis swallowed some milk for the first time today. The doctor and speech therapist suggested that he try 5 ml of milk in a bottle. Lewis coughed a little, but he did swallow some - he swallowed about 3 ml (half a teaspoon), but enough to prove he can swallow, it seems. The speech therapist will try again tomorrow. She may also order that a swallow study be performed to see whether he is protecting his airway adequately enough. It's a start.

There wasn't much time to celebrate that small victory. Shortly after the feeding success, the techs came to administer an EEG (measurement of brain electrical activity used by neurologists). They weren't particularly soothing or gentle and Lewis started in on a crying episode that lasted, on and off, for almost 3 hours. Jenn just couldn't get him to calm down, she eventually succeeded, but it was a long process.

The nurse says he slept for an hour or so and has been intermittently fussy since. It helps that you can walk around with him now - just have to take the IV pole that his milk pump lives on. They can't seem to find a reason for Lewis'unhappiness - everyone we ask has a different theory, ranging from gas to results of Lewis' injuries.

Tomorrow could be another fun one - our man is scheduled to be circumcised in the morning. They'll use a topical anesthetic, but no morphine - even the 'as needed' morphine doses were stopped for good today. Probably best to put the morphine behind us, but it won't make tomorrow any easier.

Some Photos

There's really nothing new to report. Lewis had to have morphine at about 1:30am this morning and pretty much slept the rest of the day. He is handling the full feeds well and tomorrow we'll see what the doctors think about condensing the feeds to shorter time frames.

stretchy stretchy

sleeping baby

slinging it

Saturday night

Jenn and I just got back from a great Saturday night date, visiting Lewis. He had a good day today. He's up to full feeds and seems to be tolerating them - 30 ml/h of milk. Since Lewis is getting all his nutrition through his NG tube, they have removed the PICC IV line. Jenn got to give him his bath and he was sleepy the rest of the time we were there.

Lewis was fussy when we left, but it doesn't seem to be anything more serious than wanting to be held.

Two months

Lewis is two months old today. We took some pictures, we'll try to get them posted soon. He is up to 27 ml/h of milk on continuous feed through the NG tube. That's probably a couple ml short of a 'full' level, for his weight, but he no longer needs IV nutrition or fluids at this level. The docs are starting to talk seriously about removing Lewis' PICC (IV) line. Maybe even tomorrow. We're pleased with the progress, but more than a little nervous about removing the line, especially given how traumatic it was to get an IV in last time.

Jenn seems to have pinpointed the issue with the lollipops - Lewis doesn't like the orange flavor they kept trying. He smacks his lips for watermelon dum dums. Who knew? I suppose he's got a right to be a picky eater.

No PT or speech today, but Lewis did try something else new. He'll need to hold still for a long time for his MRI next week. Last time he was intubated and they sedated him. This time, they're hoping to strap him down in a papoose board (more or less a straight jacket for babies). They gave it a shot today to see how he handled it. Once Jenn had him calmed down and sleeping, they strapped him in. He slept well for about an hour more without noticing, then he woke up and expressed his extreme distaste. Overall, pretty promising, but the timing will be tricky. We'll worry about that next week.

Pucker Face

Another full day. Lewis had physical therapy and speech therapy today. Jenn took him for another walk around the floor too - this time he stayed awake and checked things out. Mercifully, he calmed down for me after his customary 6 pm meltdown - no morphine needed. Lewis seems to be much more demanding of whomever is holding him lately - he has to be rocked to stay calm when he's awake.

Feedings are up to 23 ml/h of milk through the naso-gastric tube, hoping to go up to 25 ml/h tonight or tomorrow. They're talking about stopping the IV fluids, since he is now very close to full feedings. Still not much interest in eating the regular way - even with the lollipops, but we're working on it. The speech therapist did some work alternating between a lollipop and a glycerin swab (sour flavor we're told) to encourage Lewis to like tasting things. He made a pucker face with the glycerin swab and the therapist was pleased with this reaction.

The surgeon was certain that the abscess was no longer an issue, so they stopped the last antibiotic today. Things seem to be going well for the last few days, so we're keeping our fingers crossed.

10.6 lb Romeo

Lewis had a solid day today. The physical therapist was pleased with his progress and he got in a walk with Jenn - he's still really enjoying the sling. When I visited, he made no secret of the fact that he preferred to be held by the nurse. He went from mild crying to full out tantrum on my watch. When he went back to a different nurse (who took pity on me), he calmed right down. For a couple of minutes. Lewis ended a 40 hour streak without a morphine dose around 6:30 tonight. His nurse had to change out part of his IV setup and he just couldn't get calmed down. Overall, though, he's doing quite well kicking the morphine. He's also really got quite a few of the nurses wrapped around his finger - seems he's being held every time we call.

Aside from that tantrum, Lewis did a lot of sleeping. Milk is up to 19 ml/h and going down okay. The docs have him scheduled for another MRI and EEG next week. He is done with one of the antibiotics, but they'll be doing a sonogram to make sure the abscess is all cleared up before taking him off the second one. No speech therapy today, but we didn't have much luck getting him interested in the dum-dums. Maybe he doesn't like orange. Root beer tomorrow?