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?

Expanding Horizons

Jenn and Lewis (in the sling) got out of the NICU and took a walk around the third floor today. Lewis fell asleep, but at least he's seen some more of the world. The extended walk was the subject of lots of 'jailbreak' jokes from the nurses when I got there this evening. (Actually they encouraged Jenn to take him).

• Feeding up to 15 ml/h
• New PICC dressing with plastic - no more double diapering (thank goodness)
• Continuing to work to get off the IV - Lewis' reflux/digestion meds were changed from IV to oral today
• Tomorrow is the last day of antibiotics after the last surgery

When I arrived after work, one of the nurses was holding Lewis. He seems to be pretty popular around there - he gets held an awful lot, even when we aren't there. Lewis did need a morphine dose overnight last night, but so far he's gone through today without one, as long as he gets enough attention.

Group Therapy

We've been told repeatedly how important it is for infants to get as much therapy as possible early on, so we're happy that Lewis re-started both physical therapy and speech therapy today. He's missed a lot because of the surgeries. Physical therapy was very positive - Lewis is still hypertonic, meaning that there is much more tension in his muscles than normal (typical for infants who have suffered this type of brain insult). The therapist discovered today that he is able to relax that hypertonicity. The ability to relax the stiffness is a good sign that he will respond to physical therapy. We knew that Lewis wasn't always that tense, he does open his hands and relax his arms at points, especially if you help him. Until today, nobody asked or checked, so we didn't know that we knew. So we've go that going for us, which is nice.

Speech was not quite as positive, but still went okay. Lewis isn't too interested in his pacifier lately, but the therapist was still able to get him to suck a bit. She cleared us to try Dum-Dums for him tomorrow. On a related note, the surgeon would like Lewis to get a barium swallow test done soon, so that we can start working on feeding him by mouth. That will be a slow progression, but it will be great to start trying. Any feeding that we are able to do by mouth would complement the tube feedings.

Meantime, Lewis' NG tube feeds are up to 13 ml/h continuous and going okay. The goal is to get him up to about 30 ml/h. If we get that far with no problems, they'll work on making the feedings "less continuous", but not quite all at once. All of Lewis' stomach re-engineering makes the process pretty touchy.

Jenn also got Lewis into the baby sling that we used to carry Nate at this age. She took Lewis and the IV pole for a few laps of the NICU. Lewis promptly settled into the sling and took a nap.

Tummy Time

Sleepy day today. Lewis slept well last night and was calm and easygoing all day today. The aggressive food plan from yesterday wasn't implemented. He's increased to 11 ml/h, so that was much ado about nothing. Lewis had company from 9:30 this morning until 6 tonight. He was in a pretty good mood all day, so long as he got enough attention. He's definitely enjoying spending time on his belly, now that both drains have been removed. It is also a lot easier to hold him, with only two tubes and his various monitor cords to contend with.

Just like yesterday, Lewis had his only dose of morphine shortly after 6, along with a dose of Versed (a sedative) to calm him down. Back to business tomorrow, when all the specialists and therapists return from the holiday.

No drugs, just lollipops...

A new doctor is in service this weekend (that's usually the case). He made some changes with Lewis' feeding and medication today. The doctor has upped the pace of the feedings, increasing them 2 ml/h every twelve hours. Lewis was getting 9 ml/h today, and he'll be getting 11 by this evening. Both Jenn and I discussed this with the doctor - his reasoning seems sound, so off we go. He is anxious to get Lewis up to full feedings as soon as possible, in hopes that they can remove the PICC (IV) line, which is a potential source of infection. Lewis will be monitored closely - if/when he is unable to digest the volume of milk, they will back him off to the last good feeding level. This new strategy was a little hard for me to accept at first, given the expectations of the prior doctor. Still, it represents a positive change in outlook - the new doc is convinced that Lewis can handle full feedings. I hope he's right.

In other news, the drain on Lewis right side was removed today, another good step. The new doc also cut his morphine down to "as needed" only. Lewis did well all day without a dose. When I spoke to the nurse just now, she said he was "inconsolable" when Jenn left tonight - so he got his only dose of the day so far. Morphine is a poor substitute for Jenn, but I can't blame him, I'd hit the sauce too ;)

Lewis hasn't shown much interest in his pacifier the last day or two. The nurses have suggested dum-dums (lollipops). Apparently they're often used to help develop positive associations and work on sucking in little babies. We'll see what the speech therapist thinks of that on Monday.

Good Lovin'

All three of us got good cuddles today. Nate was pretty excited to hold his baby brother.

Pretty light on new medical news again. Lewis is up to 6 ml/h of milk, continuously fed through his naso-gastric tube. So far he's handling it well (keep your fingers crossed). The surgeon took out the drain on his left side (the one for the abscess) this morning. They actually took out the stitches and removed it while I was holding him. Lewis wasn't all that happy about it, but he recovered quickly. It was nice to be able to physically provide some support during a procedure - however minor. The surgeon anticipates removing the drain on his right side (near the stomach stitches) tomorrow. Lewis' morphine dose was reduced again today as well, happily, he didn't seem to notice.

Jenn spent the whole afternoon with Lewis, until Nate and I arrived just before dinner time. He was wide awake and in a good mood, so Nate decided to show him how to fix some things with his Bob the builder tools.

Nate and I arrived in time to watch Jenn change Lewis' new double diaper set up. The nurses have tried all sorts of different ways to keep him from wetting the dressing for his PICC line (IV line in his upper thigh) . Like most little boys, Lewis defies all efforts to get him to pee in the right place. Today they are using two layers of diapers - the first has a strategically placed hole in it - to try to keep his bandages dry. It looks like it might be working, but it isn't' easy to get him diapered up. Best of all, he didn't cry when Jenn changed him - hopefully that means his tummy is starting to feel better.

Giving Thanks

In honor of the holiday, Lewis put on some weight overnight. He was up 200 grams or so when they weighed him. Then he lost some of that weight - he pooped this morning, first time since his surgery (great news - that means that everything is working down there). Other than that, Lewis had a pretty relaxed holiday. Jenn got in some good cuddle time this afternoon, and the nurses have been keeping him calm with "sweet-eez", (basically sugar water on a pacifier). Feedings are still going well, but just a tiny bit at a time - up to 4 ml/h now.

We're thankful for a lot of things today. Particularly for the great care that Lewis is receiving from the NICU staff and for the wonderful support from all our friends and family. Thank you, we hope you're having a wonderful Thanksgiving.

Feed Me!

Jenn held Lewis for a good long time this morning - he stayed in a pretty good mood while we were there. Around lunchtime, he went downstairs for the barium study. The surgeons were satisfied with what they saw on the x-rays, so far the stitches in his stomach appear to be holding well. Armed with those results, the surgeon removed the repogle tube Lewis had in (a suction line to help drain his stomach) and replaced it with a naso-gastric feeding tube. Lewis started on very small feedings by dinnertime - about 3 ml/h so far.

Feeding will progress very slowly, until we understand what Lewis can handle. We had a long talk with the head doctor about feeding possibilities today. He prepared us that it could take quite a long time, and there's some chance that Lewis would need to spend some time in a stepdown facility, after the NICU, before he comes home. The good news is that kids can come home with full feeds via NG tube, or full feeds through an IV, or anywhere in between. Many of the feeding limitations may improve as Lewis grows.

In other news, Lewis moved back into a crib today (he had been on an open, warmer type bed). He seems much more comfortable and is spending most of his time lounging in a "boppy pillow" that gets him in a more upright position. Besides feeding, his main project is quitting morphine, not so easy, since he's been on narcotic pain meds for a couple of weeks straight, now. They are very slowly cutting his dose. He seems to be okay so far, but the nurses are keeping a very close eye on things and not pushing him too hard.

Bespoke Belly

Lewis had a great day today. They extubated him and it really made him happier. No step down this time - just straight from the ventilator to regular breathing. He seems to be handling it very well. He appears to be much happier without the tube. I got to hold him for a while - somewhat complex, since he still has two drains, a PICC line, a naso-gastric (NG) tube and 4 different monitor cords, but well worth it.

If we could stay focused just on today, we'd be very happy. We got a little ahead and started to worry about his feeding, which may start as soon as tomorrow. The surgeon visited a couple of times and is quite pleased with Lewis' healing so far. They'll do the barium study tomorrow, which will tell us definitively whether the stitches in Lewis' stomach have held. If so, they'll start feeding him (ever so slowly) through the NG tube.

There is some difference of opinion, even between the docs, about Lewis' chances of being able to get all his nutrition through the NG tube (or by mouth). It isn't clear how well he'll be able to handle the feeding, given his custom-tailored tummy. He is now missing the valve that regulates the flow of stomach contents into the intestine. No one can tell how big a problem that will be, or whether the somewhat smaller size of his stomach will be an issue. He can continue to receive nutrition via IV, if necessary, to fill any requirements that regular feeding can't meet. We got ahead of ourselves and got all worried about that, earlier today.

There's nothing we can do to influence Lewis' success level in feeding just now. For the moment, we're trying to stay focused on how much happier he is without the breathing tube. Today is better than yesterday.

Monday

So far, today's been another pretty quiet day for Lewis. There's more going on around him, during the week, but he continues to rest pretty uneventfully. He's got a little bit of a rash on his face and his chest. The docs are pretty sure it is from one of the antibiotics but they aren't at all concerned. They suggested that they could give him benadryl, but that it would be more for us than for Lewis, since it doesn't seem to be bothering him. They expect to change the antibiotics today or tomorrow, in any case, so we're letting it be. The change in antibiotics will be based on the results of the cultures from his abcess. They know two things are growing in that culture - as soon as they're sure about both of them (one is strep) they'll tailor the antibiotics to those bacteria. (This is okay - we expected bacteria in these cultures, since we knew there was an infection)

Hopefully this will document the last time Lewis has a breathing tube...

The surgeon is happy with the way things are healing and they took the dressing off Lewis' scar today. It looks pretty good and it's healing well. It's big - about 8 cm (3 + inches) long. We took a couple off pictures, which are below. (Sorry for the quality - we used the NICU's camera, left ours home by accident).

Chicks dig scars...right?

Away from that, there was some talk about extubating Lewis today, but the docs decided against it. They can be much more proactive in managing his pain while he's intubated. As much as Lewis hates the breathing tube (he grabs at it whenever he can), we think leaving it in is the right decision right now. We'd prefer to be sure he isn't in pain, without the added risk of respiratory problems - at least for a day or two.

The next step is likely to be another barium survey, later this week (W or F). That'll tell us how well things are healing. If it goes okay, they'd remove the plastic drain tube near Lewis' stomach stitches.

Smiling and Crying

Medically, no news today. Lewis continues to rest comfortably, for the most part. Still intubated, with lots of pain meds, sedation and tubes going in and out. No new concerns and nothing in particular resolved since yesterday. We did see the neurologist in passing, but everything else is pretty much on hold until Lewis gets better from the surgery.

Jenn noticed both a smile (twice) and real tears this morning when she was with Lewis. (Both are typical from newborns in the 4 to 6 week time period). The tears are upsetting, but normal, when a baby is in pain. Some people claim that little babies smile only when they have gas. Not so. Lewis is recovering from abdominal surgery, so they listen for "bowel sounds" several times a day. The nurses didn't hear anything from Lewis' stomach until this evening, long after the initial smile.

Recovery, part 3, day 2

Not much to tell today. Recovery seems to be proceeding as it should. For the most part, Lewis seems to be comfortable - he spends much of his time sleeping, because of all the meds. Still, when he has his diaper changed, or is moved in any way that involves his midsection, he's clearly in pain, no matter what they give him. He cries - you can see it in his face - but there's no sound, because of the breathing tube.

Lewis is still intubated but he isn't using much of the assistance the ventilator provides. He'll have to be on it until his pain medication is dialed down dramatically. His blood pressure and temperature seem to be under control. The drains installed in both sides of his belly are draining the right things, in roughly the right amounts, we're told. His red blood cell, white blood cell and platelet counts are back in normal ranges. He is sleeping on his left side to help alleviate a partial deflation in his right lung (atelectasis), but the docs aren't concerned about it. They're switching his painkiller to morphine, from Fentonyl, since they are concerned about him developing a tolerance for Fentonyl.

Lewis does occasionally open his eyes and look around, so I hung his stuffed turtle right above him. (I had a lot of time, and there's a lot of tape laying around). Jenn was able to get him a small pacifier (the kind they use for preemies) that he can fit in his mouth next to the tube - he seemed to like that.

First Step

Today's focus was mostly on keeping Lewis comfortable and safe, so he can get started healing. Once he got settled last night and got started on his medicines and fluids, he had a pretty calm evening. Getting him settled wasn't such a quick process though. He got a couple of transfusions, antibiotics, medicines for pain and sedation, a diuretic to help him get rid of some of the fluids from surgery and nutrition by IV. His ventilator is already down to room air (no added oxygen) but we've been warned they're likely to keep him intubated for a few days. Since this was a more invasive surgery, Lewis will need more pain meds than last time. In order provide those drugs to an infant safely, they have to keep him on the ventilator.

The surgeon came by during the day today. He thought things looked good so far - not too much swelling and the drains and incisions looked the way he wanted them to look. So far, Lewis' temperature is normal and his blood pressure appears to be under control.

The physician who heads up the NICU told us that, in his 35 years of practice, he's never seen a baby have as many bad breaks in a row as Lewis. Now that we hold the record, we figure our man should start to rest up and head in the other direction. Hopefully that journey starts today.

It Has To Get Better

Today's surgery did not go as expected. It ended up taking more than 5 hours. On the good side, Lewis was stable throughout and is safely back in the NICU. We're too drained to go through all the details, here's a summary.

What they found
- the original g-tube site had deteriorated significantly more than anyone thought and all the original stitches had fallen apart.
- the pylorus, the valve at the bottom of the stomach, was thick and abnormal - they aren't sure why (it may have been that way from birth). A small part of the bottom part of his stomach was in terrible shape and 'not salvageable'
- the collection of fluid on Lewis' left side was not a hematoma, it was a very large abscess (infection) which was puss filled and stuck to the intestines in several places (surprising since he wasn't showing infection symptoms)

What they did
- cleaned up and closed the original g-tube site
- drained and cleaned out the abscess, detached the places where his intestines were stuck to the abscess and installed a drain (plastic tube that will be there temporarily) to keep the area clean
- removed the pylorus and a portion of the bottom part of the stomach and reattached the stomach to the intestine. Installed a drain which will help them monitor the healing of these stitches, which are in a very touchy spot.
-Lewis will most likely have another blood transfusion tonight to offset his blood loss from the surgery

The surgeon was not able to install a feeding tube of any type- there wasn't a safe solution given the other problems. In a week or so, after some healing and another barium survey, we will revisit using a naso-gastric tube to feed Lewis. In the meantime, he'll continue to be fed by IV. It will be several months before they can consider installing a g-tube again. No estimate on how much longer Lewis will be in the hospital, but we'll be focused on just getting him healed up for the next few weeks. Meantime, he is intubated and the nurses are working very hard to keep him comfortable.

Back where we started

Turn of events since yesterday. The surgeon will be operating on Lewis again tomorrow morning. Lewis' g-tube started leaking this morning, so they stopped his feeding around 11AM. In addition, the barium study that they did around lunchtime showed that there still seems to be some obstruction in the stomach, but the exact nature of the obstruction isn't clear.

The wound around the g-tube has gotten larger and is likely to expand more without intervention. The muscle wasn't mending properly around it. This leads the wound to leak stomach acid and milk, which makes the tissue weaker. Once it starts, it becomes a self-fulfilling prophesy. Since the tissue around the wound isn't healthy, we're told it is very unlikely to get better without further surgery. The deterioration that would be caused by the leaking stomach acid would be painful for Lewis and would likely make the surgery urgent within a couple of weeks. Presently, he seems comfortable. He was a pretty normal baby, reasonably happy today - but we only saw him after they stopped his feeding.

Goals of the surgery

• remove the existing g-tube button and stitch up the incision
• install a new g-tube (this one won't be a button, but more of a one piece tube, it can be switched back to a button in a couple of months, simple outpatient procedure).
• determine what is causing the blockage in Lewis' stomach
• clean up the remaining blood from the hematoma in between Lewis' stomach and spleen

The surgery won't be laproscopic, they'll need to make a larger incision in Lewis' belly. On the bright side, this will allow them to install the new g-tube using a type of incision that does not hurt the muscle as much and is more likely to heal well. It is expected to be a couple of hours of surgical time, after any prep. They'll likely get him in to the OR late morning tomorrow. Lewis will need to be intubated (put on a ventilator) again for the surgery and a couple of days after. His recovery time will depend on what they find out about his stomach.

Hopefully Lewis has paid his dues and won't have any more complications this time.

Bustin' Loose

Luckily, Jenn and I were pretty groggy when we called to check on Lewis around 3 this morning. The nurse told us that everything was fine, but that Lewis' g-tube button had popped out. Initially, I didn't really realize that she meant the whole fitting had come out, meaning there was a hole in our boy. The nurse was awfully calm about the whole thing. She said the surgeon had come up and fixed it pretty fast. Turns out that this isn't all that unusual, though it merits a trip the emergency room, if it ever happens at home. The g-tube fitting (aka button) is held in place by a small water inflated "balloon" inside the stomach. Lewis' balloon had been intentionally underinflated to try and get the end of the tube in the right place. Anyway, it's all better now, and we didn't have a chance to panic until after the fact. I guess the swelling in his belly went down some, that left the button a little loose. When Lewis wiggled around, out it came.

Feeding/g-tube - the button is back in place now and working fine. In fact, Lewis is up to 20 ml/hour of milk. 25 Ml/h is considered "full feeding", they're upping him to that level tonight. The surgeon thinks that the partial blockage in Lewis' stomach may have resolved with the decrease in swelling - that would mean they could remove the tube in his nose that is there to vent gas. They'll do a barium survey on the g-tube tomorrow to see how things look, but overall the surgeons were pleased with the progress.

Blood Pressure/Blood Composition - Hematocrit levels (red blood cell level) are much improved and platelet levels are back to good levels. Both these numbers indicate that the hematoma in Lewis' stomach is healing. Blood pressure is down to the higher end of the normal range.

Meds - the doctors have decided to cut the Fentonyl off again. The theory is that Lewis was actually unhappy the other day because his tummy was empty, not because of withdrawal. Lewis' last dose was at 2 PM today, so we'll see how he's doing tonight.

Lewis also started back on physical therapy today - the therapist started to work on the stiffness in his limbs and showed Jenn a bunch of things she can start to do with him. Jenn just told me that Lewis also got a visit from a doctor in the Woundoscopy department to look at the area around his g-tube - the doc prescribed some special ointment. Woundoscopy? Who knew?

Look Kids, there's Big Ben, there's Parliament...

More of the same, but we're learning to enjoy these low key days. Last week gave us a good bit more perspective. Lewis is healing a little bit at a time, but he seems to be comfortable and there is some progress. He is now taking 10 ml/h of milk through the g-tube. The surgeon is pleased with the way the g-tube is healing, though there is a little bit of a skin infection around it, he's now on a topical antibiotic for that. When the surgeon thinks the swelling has gone down enough, he'll do another barium survey to determine what needs to be done to move the g-tube, if anything. Until then, we just work on getting better.

Now that they're weaning Lewis from the Fentonyl (he's down to a dose every 8 hours, today), instead of going cold turkey, Lewis is a much happier guy. He was calmly awake and fell asleep in my arms for an hour today, and then I watched him sleep for a while when I came back later. He was a little bit more lively with Jenn, but not terribly fussy for us or the nurses. We did notice that his arms are really stiff - he likes to keep his fists right up near his face, and they're very hard to move. Hopefully, physical therapy will start again tomorrow, and we'll go from there.

If You Build It, He Will Come

At least, that's what we were thinking, so Bop (Lewis' granddad) helped us assemble the crib at home today. Lewis is too big for the bassinet. We still don't have a clear timeframe for Lewis' homecoming but we remain hopeful. Meantime, Lewis slept peacefully all day. Not so exciting for us, but good that he's comfortable.

Weekends are a relaxed time in the NICU, with no specialists and much less action than usual. Good time to visit and rest. The docs think that most of the fussiness from a couple of days back was a result of trying to get Lewis off his pain meds too quickly. They've got him on a more regular step down dose now, and he seems to be much happier. ("Cold turkey" wasn't his thing).
Not too much else to report, we're just waiting for everything we've mentioned in prior posts to progress. Until then, we don't know exactly what the next steps are. The site where the g-tube goes in seems to be healing up - much less "weeping" around the wound today, if any. Feeding is ramping up very slowly - now at 5 ml/hour - and going well so far.

Given how last week went, we're okay with a few slow days.

No News is Good News

Not a whole lot to report today. Lewis was awfully fussy last night - awake at midnight and still awake and cranky at 3. Our best guess is that he still has some pain and maybe also having a problem going cold turkey from the meds he had been on. Ultimately, the docs decided to put Lewis on a small dose of pain killer every few hours to keep him more comfortable. Jenn did manage to hold him for an hour today though- he slept the whole time.

Other than that, Lewis started on 5 ml of milk every 3 hours through his g-tube. That worked okay, so they've upped him to 10. He's still getting all his nutrition through his PICC line (fancy IV in his leg) so the milk is more of a test for his system so far. Lewis' blood pressure is down somewhat, and he's down to one dose of Lasix (diuretic) a day. They've discontinued the antibiotics, since there's no sign of infection thus far.

The surgeon came by later in the day and is happy with the way things are progressing. The next big milestone will be when the hematoma shrinks enough to resolve the problems in Lewis' stomach. Hopefully another low key day of cuddles and healing tomorrow.

TGIF

When I called to check on Lewis at bed time last night, the nurse couldn't come to the phone. She was in the process of removing his breathing tube. Bedtime got pushed back. They put him on a nasal cannula for a bit, just to help out. By 4, he'd been taken off the cannula too. He's been doing just fine on room air ever since. It was a nice way to start the day.

Even without the ventilator, Lewis still has a lot of healing to do from the surgery. Holding him is a little complicated, since he's still got a lot of stuff attached, but it can be done - first time since last Friday. Lewis also has some withdrawal symptoms (sweaty, a little shaky), after being on heavy duty painkillers for a week. Despite all that, he's definitely happier today.

Jenn was able to get Lewis to take his pacifier several times while she was holding him, for longer than he did before the surgery.

The surgeon isn't sure how long it will take for the stomach hematoma to heal, so that the blockage in the stomach resolves. Once we're done with that, the next steps will be a bit more clear. In the meantime, the docs think they will try to start small feedings through the g-tube a little bit tomorrow (safe since they have a nasogastric tube in to vent air from the blocked portion of the tummy).

I (don't) Wanna be Sedated

Lewis was more active today and looking better. He is being weaned from his heavy duty pain and sedation meds. (Fentanyl and Versed, respectively) This is a good thing. He is also being weaned from the ventilator (they are lowering the settings and making him breathe more on his own). Tonight, Lewis was in and out of sleep and occasionally trying to grab at his naso-gastric tube, which is being used to vent air in his belly. The perfect amount of medication is the level where Lewis doesn't need his breathing tube but can't quite get after all his other tubes.

Respiratory - working to wean Lewis from the ventilator by lowering the settings through the day. They will try to take him off the ventilator sometime tomorrow, he may need some breathing support in his nose for a while after that.

Kidneys/blood pressure - responding well to the diuretic treatment, blood pressure is still elevated but has come down significantly. Lewis is peeing a lot - he'd lost 440g as of last night (almost 1 lb), presumably all fluid. The kidney doctor said the treatment is working exactly the way it should. If it keeps up, Lewis should not need any BP medication.

Abdomen/surgery healing - we're told that the surgeon is happy with Lewis' progress healing overnight. No more signs of infection, at the moment.

Good to have a day where things move in the right direction.

This is Lumbar Puncture

A couple more sonograms of Lewis' abdomen essentially confirmed the hypothesis from yesterday. Most of the post operative complications are caused by a big hematoma in the stomach wall. We're also working to solve high blood pressure and a potential infection. Here's a rundown on today's events.

Blood - when we arrived this morning, Lewis was receiving a red blood cell transfusion, which completely freaked us out. We had been warned that he might need the transfusion, if his hematocrit (red blood cell count, they carry oxygen) dropped below where it had been over the last day or so. The aggregation of blood in the hematoma sounds like it caused this. Lewis' platelet count is also low, for the same reason, but not low enough to require a transfusion at this point. (Platelets are responsible for clotting). We noted that medical professionals don't seem to see think transfusions are nearly as much of a cause for alarm as we did.

Kidneys/blood pressure - as we mentioned yesterday, they did a sonogram of the kidneys with a kidney specialist to try to determine why Lewis has high blood pressure. The specialist noted that there could be some kidney damage from the initial oxygen deficit at birth, but she didn't see any problems at this point. She thought that high BP is likely a result of the retention of fluid and sodium. The fluid retention isn't unusual after surgery (it was described to us as one of the body's reactions to stress) and is one of the things making Lewis so swollen. The doctors have put Lewis on Lasix to treat the fluid retention. If that doesn't solve the blood pressure issues, they'll move to a hypertension drug, but the Docs don't seem concerned. The first dose of Lasix was around 2, Lewis has been peeing like a fiend since then. His BP is down a little, but not too much so far.

Infection - still no direct evidence of an infection, but the Docs remain quite concerned. The blood and urine cultures from a couple of days ago are still negative and the more recent ones aren't ready yet. Lewis' fever was down to normal range all day today. There's still concern that Lewis could be brewing something. The NICU Docs got a consult from an infectious disease specialist to make sure they weren't missing anything. Based on that, Lewis got a lumbar puncture (spinal tap) to confirm there wasn't an infection of the spinal fluid. They also changed him to a different antibiotic. The good news is that they gave him his pain killer and sedatives right before the lumbar puncture and apparently it was done very well. Hopefully it didn't hurt him much.

Respiratory - Lewis is relying on the ventilator much less today. No firm word on when it can be removed, but they're not concerned about him breathing without it.

When I left tonight, Lewis was resting comfortably, alternating between dozing and looking around calmly. His color is good, his hands and feet are warm and his face is nice and rosy as a result of the new blood.

BTW - based on our observations today, "lumbar puncture" and "spinal tap" are synonomous, unless you're trying to keep addled parents calm. In that case, Spinal Tap is just a movie...

Picture not drawn to scale

When we're at the hospital, I carry around a small pad to take notes about everything that is going on with Lewis. In one of our updates today, the surgeon borrowed the pad and drew a picture to help explain what they believe is causing most of the complications. He apologized for his poor drawing and he didn't give me permission to distribute it, but it helped me understand what they think is going on. It looked a lot like this...

Lewis' stomach

The circle at the top represents the Nissen Fundoplication. On the right side, there is a small circle - that's where the g-tube goes in. The circle at the bottom is the pylorus, at the bottom of the stomach, above the intestine. Right now, the end of the g-tube is right around the pylorus, or maybe just a little past it. If you look closely, you can see that he's drawn where the g-tube should empty into the stomach, right in the middle. The end of the tube is in the wrong place because of the shaded area at the lower right. That shaded area is the hematoma (bad bruise) in the stomach wall that was caused by the first g-tube insertion, which didn't go right and had to be done again. They think the swelling from the hematoma may be compressing the stomach, pushing the g-tube too far down and causing a partial blockage. The fundoplication keeps that air from going up. The blockage is keeping air from going down. The g-tube has been pushed out of place, so the air can't vent out that way, either.

Based on this hypothesis, they put in a naso-gastric (nose to tummy) tube to vent out the air this afternoon. Here's how this is impacting everything else:

Respiratory - still on the ventilator. They believe the swelling in Lewis' belly is putting pressure on his lungs - making it hard for them to expand. When they get the swelling resolved, he should be able to get off the ventilator. As of this afternoon, the doctors hoped to have Lewis breathing on his own within 24 hours.

Feeding - right now, nutrition is coming through the IV. The g-tube placement won't keep them from feeding Lewis through it. There's no problem with the food going into the belly a little lower, as long as the naso-gastric tube stays in to vent air. However, the g-tube position will need to be corrected before Lewis is able to come home. We're told that shouldn't require surgery, but it has to wait until the wound is fully healed. Best guess - a week or so, at least.

Blood Pressure - still up. They aren't sure why, exactly. They just finished a sonogram of the kidneys to see if they can figure it out. It is likely to be a circulatory issue within the kidneys. The doctors seemed confident this could be resolved with medicine, when they figure out what is causing it.

Fever/Infection - fever seems to have gone away, but they still aren't sure that Lewis doesn't have an infection. If there is one, it may be an inflamation in the abdomen from stuff that leaked out during surgery (peritonitis).

They're looking over the ultrasound and considering adding a second antibiotic now. Hopefully this stuff will start kicking in overnight.

Hurry Up and Wait

We're about to head back to the hospital to visit, so I'll try to keep this brief. Overall, today was very frustrating. Lewis is experiencing lots of complications with his recovery. So far today, we haven't been able to make much progress.

During the surgery to insert the PICC line yesterday, Lewis temperature increased some, this is not unusual. Afterwards his temp came down, but not to normal. His temp has fluctuated on the high side of normal since (b/w 37.1 and 37.6 C, after being at 37.8, 37.0 = 98.6 F). At the same time, his stomach continued to swell with air. He is also swollen and retaining fluids - he's gained about 330 g (about 11 oz) over the last day. All the swelling in his abdomen is putting pressure on Lewis' lungs and making it hard for him to fully inflate them, so he's relying more on the ventilator. This leaves us to wonder why the air and fluid aren't escaping and what is causing the increase in temperature.

After the increase in temperature, the NICU did blood and urine cultures to try to figure out the cause of the problems. Lewis' white blood cell count was okay, indicating that there may not be an infection. His red blood cell count (hematocrit) was down, this is a concern, but may well have been caused by the dilution to his blood from all the fluid he's retaining. We won't know about the results of the cultures for a while, but they will tell us if he has an infection, or if the raise in temp is caused by abdominal irritation from the surgery.

We spent most of the day waiting for the surgeon, to see what he wanted to do about the swelling. The surgeon thinks that Lewis' stomach is retaining air because of swelling and the way the g-tube was inserted. He made a minor adjustment to the g-tube and determined that the best course of action was to give it some time to take effect. Hopefully the air will drain out on its own. The surgeon isn't concerned about the other symptoms right now, he thinks they are not unusual following significant abdominal surgery.

The NICU, on the other hand, is keeping a close eye on the fever and blood counts. If those measures get worse, they'll likely do another spinal tap and add another antibiotic (he's on one as a precaution from the surgery), at least.

Hopefully this makes some sense - there is enough uncertainty that is doesn't make sense to go through things in great detail until we know more...

I.V., Part IV

Medically speaking, today sucked. When Jenn and I arrived this morning, things were going okay, but we immediately noticed that Lewis had only one IV running. Turns out the one in his arm had failed earlier in the morning and was removed. A few minutes later, Jenn noticed that the IV in his foot was leaking, that vein had collapsed too. They were able to get a new line into his arm pretty quickly, but that one failed 45 minutes later. They warned us that they might need to put the IV into a vein in Lewis' head. We decided to take a break and come back later while they worked on that.

After four attempts to insert an IV on his head, they decided to put in a PICC line. (Peripherally inserted central catheter, for those so inclined), which involves surgically inserting a catheter into a vein. Even that wasn't easy. By that point, Lewis was pretty well dehydrated, so the first couple of veins they tried were problematic. They got it going on the 3rd try and it has been working for several hours now, delivering meds and fluids.

Away from the IV, things are going okay. the g-tube seems to be healing nicely. Lewis' blood pressure and heart rate continue to be elevated. They're keeping an eye on that for the moment. If he continues to have high blood pressure, the docs will have an ultrasound done on his kidneys. They suspect the hypertension may be caused by a circulatory problem in his kidneys. After all the excitement with the IVs, they've decided to keep him on respiratory support overnight, just so that he can rest a little easier.

Last night, the tube for the ventilator was inserted a little bit too far. This caused a partial collapse of Lewis' left lung. That's what caused the wheezing last night. The position of the tube has since been corrected and his lung is better.

I think that's it. Today was miserable because of how painful the IV nonsense was for Lewis, but we have to keep things in perspective. Lewis is on plenty of pain meds and sedation, so hopefully it didn't hurt him much. He's having a tough recovery from the surgery, but he doesn't seem to be losing ground overall. Tomorrow's a new day.

Recovery

Today was a pretty low key day for Lewis and tomorrow should be more of the same. He's pretty heavily sedated and on pain meds - otherwise he'd be ticked off about the breathing tube and the two IVs - but he seems to be recovering well. They have him resting in an open bed with radiant heat, so that they can easily monitor all the stuff he's got going on. In addition to the IVs and breathing support, he's got the g-tube itself hooked up right now to help his stomach drain anything left from the surgery. When he's fully recovered, the g-tube will only be attached when he's feeding. The actual fitting on his stomach is called a 'button' and looks like one - it only sticks out from his stomach 1/4" or so.

Medically, Lewis' blood pressure is a little bit high (not uncommon after they pump you full of fluids for surgery) and he's on some asthma type medicine because the breathing tube seems to make him wheeze a bit. There's also some swelling in his abdomen, but nothing unexpected, we're told. The good part is that he doesn't seem to need the ventilator much, if at all. (The ventilator is set up to provide support only when the baby is below certain levels of breathing frequency and depth, and Lewis is maintaining those levels on his own). We expect he'll have the breathing tube out tomorrow night or monday morning. Lewis will begin to be weaned from the sedation at that point as well.

We didn't figure Nate was ready to see Noodles with all this going on, so hopefully we'll get him in to visit later in the week.

4 Weeks Old

Let's start with the important part. Lewis is okay and recovering comfortably after today's surgery. It was a long day for all of us, and we won't know how well things went for a few days, but so far, Lewis is resting and doing fine. The surgery went well, but took a long time.

Jenn and I arrived around 8:30 so we could spend some time with Lewis before he went down to surgery. He was in a great mood and we took some pictures, since he's 4 weeks old today.

Hey ladies. Wink wink.

We got to go with the nurses who wheeled Lewis down to the operating room around 9:15AM. Lewis enjoyed the ride, slept peacefully the whole way. When we got down there, they put us all in a staging area for the OR. At that point we realized that we were the only ones in this huge area who weren't either medical staff or patients. It was like visiting the Smurfs village - dozens of people in blue scrubs running everywhere with great urgency in this big, subdivided, underground room. Very surreal. If that wasn't enough, the Anesthesiologist came in. Her name is Dr. Happe, pronounced "happy". Really. She asked us a ton of questions while she went through Lewis' medical records, but she didn't laugh when we made fun of her name. After about 45 minutes, they wheeled a still sleeping Lewis into the OR and sent us on our way.

At 11:15, they called to let us know the prep was done and they were starting surgery. Lewis got back up to the NICU a little bit after 5 pm, so the surgery took a couple of hours longer than expected. Most of the extra time was because the surgeon didn't feel good about the initial g-tube placement, he called a gastrointeroligist to check the position. It turned out that the g-tube wasn't in the stomach correctly and had to be re-inserted. We're very lucky that the surgeon was that thorough.

The doctors had explained the procedure to us in great detail, but somehow we weren't really ready to see Lewis immediately post-op. They made only 4 small incisions, well under an inch each. One for the g-tube, one for the scope, two for the tools, I think. Still, 4, half-inch incisions on your 1 month old is a lot to handle, when he's also on a ventilator and two IVs. We're assured he is comfortable. He's sedated, so that he doesn't mess with the breathing machine or the IVs, and on painkillers, so he's not hurting. He's also strong - they said he could do without the respiratory support right away, but the anesthesiologists want it kept in there as a precaution for 24 to 48 hours.

The surgeon found evidence of pretty bad esophagitis (heartburn), which may explain how fussy Lewis was. If the surgery is successful, it will really help that. On Monday, they'll do some tests to make sure the g-tube is in properly and start ramping up his feeds. 'Till then, we just try to keep him comfortable.

Sorry for the long post, it was a long day. Thanks so much for all of your support.

What, Me, Worry?

Lewis is switching to a diet of clear fluids right about now, in preparation for his surgery, scheduled for tomorrow morning at 9:30. Last night and today, the doctors and the surgeon answered every question we could think of and then some. We gave our consent to go ahead with the surgery this afternoon. It is hard to give up the progress Lewis has made in the last couple weeks and put him back under all this stress, but based on all the information we can get, the g-tube and the fundoplication, together, are really the only good alternative.

For all our concern, Lewis really doesn't seem nervous at all. Fussy, for sure, but not nervous. We did discover that he's a big fan of what the NICU staff calls "Sweet-ez". Sweet-ez is a nice name for sugar water on a pacifier. Not sure why we didn't get to try that sooner, but he digs it. It makes him happy enough that he didn't complain during his pre-surgery bloodwork or the first attempt to get an IV in. Still no luck on the IV, at last update. They'll have to get one in soon to put him on preventative antibiotics for the surgery.

The surgeon expects that it will take Lewis 7 to 10 days to recover from the surgery, but we should know whether it was successful much sooner - within a day or two. We'll keep you posted.

Picky baby

Jenn and I both had good visits with Lewis today. He continues to be pretty fussy - he particularly likes being held, upright, by Jenn or I, with the parent standing up, swaying back and forth. He gets upset if we sit down, transfer him to someone else, or change his position. Even then, keeping him from crying seems to be about 50/50. At one point today, he was calm and quiet for a minute, it turned out that he was pulling out his feeding tube, which then had to be replaced and x-rayed to make sure it was in the right spot. Well, at least he's paying attention, right?

Speech - making some progress with sucking, though the therapist still can't get him to root appropriately (that's when he goes looking for milk). He did better with the pacifier and sucking on a finger today and he's better able to control his tongue, which is important.

Physical - making progress here too, but still a long way to go. Lewis is no longer weak in his trunk - he's now showing what the therapist called "hypertone", which is sort of stiffness of the muscles. He's arching his back a lot and keeping his legs stiff. Apparently brain swelling tends to make babies quite flaccid at first and then then hypertonic, after the swelling goes down. The progression is typical, but it is this stiffness that was anticipated and needs to be treated with physical therapy.

Meds - Lewis' IV was taken out today, so he's done with the meds from last week's pneumonia. The IV was starting to fail. Unfortunately, they'll need to start a new one for his surgery on Friday, this one wouldn't last.

I also spent a some time with the physician who is head of the NICU today, to learn more about the need for surgery. Ultimately, it appears that there aren't other good options in Lewis' case, so the Nissen surgery is our only good choice. Hopefully, Lewis will be happier when we solve the reflux problem. In the meantime, he's made it clear that he knows what he likes, so we'll humor him 'till Friday.

Election Day Madhouse

The NICU was as crowded as the polls today. There were 6 new babies admitted during the day. Jenn and I were glad we spent as much time as we could with Lewis - there was enough staff to do the medical care, but the babies didn't get the usual dose of TLC from the nurses, since they were so busy admitting new patients and moving everyone around. We did our best to fill the void.

All that parental attention still didn't get Lewis into a good mood. He cried his way through the time I spent with him tonight. Mood aside, he did pretty well today. He didn't have to be suctioned at all, while either of us were there. He took his pacifier for a bit for Jenn and he gained 60 grams last night (a couple of ounces). He had the Barium survey early this morning, that went well too, his intestines are all laid out properly.

We continue to confer with the Doctors, to be absolutely sure the Nissen surgery is the right thing to do. Assuming all goes as planned, the next big thing is staying healthy ahead of the surgery on Friday morning.

A Taste of the Good Life

For a while today, Lewis had a semi-private room off in the corner of the NICU, to keep things a little quieter for him. It was pretty nice. Jenn and Lewis got to enjoy the quiet most of the day. Unfortunately, the NICU had a couple of new admissions this evening. Now they need to use that space to separate some contagious babies, so Lewis is back in the bed where he started. He's still awfully fussy, but he had a good day.

Surgery - at lunchtime, we met with the Surgeon who is scheduled to perform the Nissen Fundoplication and install the g-tube for Lewis. The Nissen solves reflux problems, the g-tube is just a more permanent way to feed him, instead of the nasogastric tube he uses now. Right now, surgery is planned for 9:30AM on Friday. The Surgeon told us a lot of stuff, including:

• the Barium survey ( scheduled for tomorrow) actually won't tell us anything about Lewis' reflux, but will tell the surgeon whether the layout of Lewis' intestines is unusual in any way. They are already convinced that Lewis' reflux is severe enough to need the Nissen surgery
• the surgery usually takes about 3 or 4 hours. It is almost always laproscopic (done through a few very small incisions).
• the outcome of the Nissen fundoplication isn't a 100% success rate, he put it at 80 to 90% for kids with some neurological issues. The surgeon also went through odds on a number of other side effects/potential complications. Suffice it to say that this usually works, and there aren't a lot of better options. If that doesn't give you a warm fuzzy, note that almost all the complications are either tolerable (i.e. 50% chance you won't be able burp or vomit afterwards) or fixable afterwards with minor procedures.

Feeding - Lewis gained a couple of ounces overnight, trending in the right direction.

Respiratory - doing well. Lewis only had to be suctioned twice during the whole overnight shift last night. Can't tell whether he just had fewer secretions or is handling them better or both. He'll have to be intubated (put on a ventilator) for a day or two for the surgery, but hopefully he'll get back to where he is quickly.

Even Jenn only had limited success keeping Lewis calm today. We're told that some of this fussiness may be helped with the surgery, which should make him more comfortable. When I visited after work, the nurses let me try a pacifier with just a bit of milk on it. Lewis took it really well - he sucked on it twice for about 20-30 seconds each time. He also latched on to my finger a couple of times for longer than he had done before. This was real progress - hopefully we'll be able to hang on to it after his surgery. Between the pacifier and lots of singing songs and changing positions, he probably only cried for half the time I visited :)

Another Lazy Sunday

Lots of visitors today, but not much news. Lewis seems to be recovering from his pneumonia nicely. He's had fewer secretions and had to be suctioned less. They changed his antibiotics somewhat last night, to just Nafcillin (from two other "-cillins" or "-myacins", we can't recall which). In addition to Jenn and I, Hank (Bop), Joanne and Et visited. (Josh's Dad, Sister and Grandmother, respectively). Lewis slept most of the morning, but he gave Jenn a hard time most of the afternoon, and was fussy while he was awake.

The surgery resident came by to see if we had any questions. We didn't learn too much, just that they're likely to do the barium survey on Tuesday or Wednesday. That'll tell us how the upper part of Lewis' digestive system looks and whether his reflux is bad enough to need the Nissen surgery we've mentioned before. We've been told the Nissen and the G-tube for feeding are pretty much a given. Lewis is up to 29 ml/h on the continuous feed. Jenn also learned how to administer his meds through the feeding tube today. Depending on what happens with the surgery, this may be the same process for Lewis once he gets to go home.

When we left today, Lewis was asleep in the baby swing, but Natalia in the crib next to him is rowdy and keeps waking him up. When we called just now, the nurse was holding Lewis and Natalia was crying...

Getting Stuck

When Jenn got to the hospital this morning, they had her wait outside the NICU while they worked on getting a new IV into Lewis. His old IV had failed sometime earlier today. He still needs it for antibiotics. An hour later, they hadn't succeeded, so they decided to take a break and try to get an IV in again later. Jenn was able to spend several hours with Lewis before Nate, Didi and I arrived.
Nate tries to make Lewis smile for the Camera

Later on, they were able to get an IV in, but it wasn't easy. We could hear Lewis hollering out in the waiting room. Didi and I spent most of the rest of the afternoon with a tired and pretty fussy Lewis. Can't blame him.

Respiratory - did I mention we could hear him hollering out in the waiting room? Lewis is back to breathing on his own (no oxygen, no cannula) and his secretions seem to have decreased significantly from yesterday. Still no luck on the swallowing.

Not much else to report today. The antibiotics seem to have us almost back to where we were a few days ago, hopefully no more fun with IVs for the time being.

Can We Fix It? Yes, We Can.

Lewis had a solid day today. The antibiotics seem to be kicking in. He's breathing easier, down to 1 liter of pressure and room air (no added oxygen) on his nasal cannula as of 8:45pm. He was sleepy most of the day, but when he was awake, he was much more animated - mostly crying and trying to pull out the cannula and his feeding tube.

Unfortunately, most of the focus today wasn't on Lewis. The focus was on fighting with insurance to sort out why/when/where they wanted to move him, since Georgetown does not have a contract with our insurance. To make a very long story (6+ hours, a few dozen calls) very short, we won. The communications breakdown within our insurance company itself was either comic or tragic, depending on your viewpoint, but shocking either way. In the end, we were able to get the parties within the insurance company, at the hospital and the third party case management firm on the same page. We won our appeal and everyone seems to be okay with letting Lewis stay at Georgetown, definitely for the immediate future and likely until he is discharged.

In case we haven't mentioned it lately, thanks again for all your support, we really, really appreciate it. Nate and I had a great time trick or treating with some friends up the street - he dressed up as Bob the Builder, which seemed fitting...

Two Steps Back

Rough day at the NICU for Lewis. Joanne (Josh’s sister) and Jenn arrived and heard that Lewis’ secretions had been sent off to be cultured…it looked like perhaps the antibiotics for pneumonia hadn’t done the job…or perhaps he had aspirated into his lungs again. Just after we arrived, Lewis vomited quite a bit. On one hand, this is good, because it shows he has the reflexes to do this. On the other hand, the vomit was a greenish color and ended up on Jenn. From this green color, we were pretty well able to determine that Lewis might need more antibiotics.



Respiratory - Lewis was struggling to breathe and sounded very congested. He was able to cough on his own (good!) but needed more frequent suctioning to get rid of the large amount of secretions he produced. He needed more help breathing and ended up with a nasal cannula (breathing tube) inserted again with 40% oxygen. (There’s 21% oxygen in the normal room air.) After having the extra boost of oxygen from the nasal cannula, he appeared to rest more easily.

They did an x-ray and determined that Lewis has pneumonia again. The doctor sent an order out to get antibiotics for Lewis, and suspected the infection had spread to Lewis’ blood, so they put in an order for a blood culture. Then they had to have an IV re-inserted so that they could administer the antibiotics. Lewis didn’t like having the IV inserted, so the first time, he kicked it out.

Speech - Lewis was exhausted and slept through his speech therapy. All in all, he was pretty “floppy” today and not himself; likely because he doesn’t feel well.

Physical Therapy - it’s also possible that Lewis just had a rough workout. The physical therapist said Lewis was awake and did a great job today with his therapy, which happened early this morning. His trunk development is still a bit less than optimal but his arms and legs are doing well, as evidenced by his ability to pull out his IV by himself.

Feeding - with the additional calories Lewis is being fed, his weight has stabilized. Jenn was able to talk briefly to the surgeon about the potential Nissen surgery, but until Lewis feels better and has a week of antibiotics in his system, the surgery’s on hold.

Last Straw - we heard from the surgeon that Kaiser, the insurance company, didn’t have a contract with Georgetown Hospital and that Lewis would have to be moved to Children’s Hospital (much farther away) to have this surgery. As you might imagine, this is NOT the best scenario for Lewis as he has great care at Georgetown and this is already his second hospital experience. (He was born at Arlington Hospital.) We are pursuing this right away with the insurance company because a baby with pneumonia shouldn’t be going anywhere.



Late day update - by 4:30, Lewis’ nasal cannula was down to room air (no added oxygen) at 2 liters and he was sleeping comfortably, at 8:30 he was awake and still doing fine.

Angry Young Man

Last night and early this morning, Lewis pulled out his naso-gastric feeding tube. Twice. Apparently he was feisty and wide awake overnight. The overnight nurse told us that he was pretty upset and that he'd "figured out the game" - crying until someone picks him up. Then he slept all day, deeply. Including when we visited. He slept through speech therapy at noon. We tried changing his diaper, changing his outfit, tickling his feet, even washing his face with a cool washcloth. He just wouldn't wake up for us. I'm sure he's wide awake now...

Feeding - Lewis lost about 40g (~1.5 oz) at last night's weigh in. They've upped his milk to 28 ml/h and are still adding calories to help him maintain his weight. Still waiting on the consult from the pediatric surgeon about the Nissen surgery - seems more like a "when" than an "if" decision, at this point.

Speech - slow progress, especially since Lewis slept through the whole thing. Even sleeping, he will suck on a finger or pacifier intermittently. Still no progress swallowing, as far as we can tell.

The outfit Lewis has on now has little mittens over his fingers to keep him from yanking on his feeding tube, so hopefully tonight will be a little more peaceful. We're again concerned about the slow pace of progress, but at least we seem to be moving in the right direction.

9 lb Houdini

Lewis likes to keep an eye on the action. His crib is on the perimeter of the NICU, so he prefers facing his right. Unfortunately for him, newborns are supposed to change positions frequently to keep their head shape and neck muscles developing properly. The nurses roll blankets and wedge the babies in to keep them in position. Today, the nurse told us that when Lewis is facing the outside of the room, he wiggles until he is flat on his back and then turns his head back to the center of the room. If only he'd focus that energy on sucking and swallowing. We put a mirror on the left side of his crib - maybe he'll stay put.

Not too much other excitement today. We're still waiting for the consult from the pediatric surgeon regarding the Nissen surgery and the G tube. Lewis' IV started to leak, so they've taken it out and stopped the antibiotics as of today (day 9 of the antibiotic cycle). They'll continue to culture his chest secretions to make sure he's through the infections.

Physical Therapy - continued to make small improvements. Slightly better trunk strength, Lewis is trying to lift his head when he's on his tummy. His eyes are tracking and he shows a preference (as we all know) for his right side over his left.

Feeding - still no swallowing. Lewis continues to make slow progress sucking. Calories are being added to all the milk he's getting (thanks Mom!) to make sure he maintains his weight. Lewis' NG feeding tube was moved down a few centimeters past his stomach to make sure it was in the right place. The nurse thought that this was just the result of him growing while the tube was in (as opposed to the tube being pulled out).