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.