Inchstones

An inchstone is one of those tiny steps that your "special needs" child takes on the way to a major milestone. I really can't compare Noodles to other children's milestone markers because he is still behind by about three - four months. But the anticipation is so painstakingly slow that I like to think of his progress as inchstones in lieu of milestones.

Lewis had two inchstones yesterday and today.

We had pretty much stopped oral feeding sessions altogether last week, because I was so down and blah about the lack of progress. But I got back up on the horse this week and Monday proved fruitless, or rather sweet potato-less. LJ just turned his head away or would immediately start gagging once it got near his mouth. However yesterday, Nate was especially interested in helping his baby brother try out some oral feeding skills. So we first tried playing with these fancy organic banana puffs (they're supposed to melt in your mouth) to get Noodles interested. Then Nate would stick one onto his lips, making sure it didn't go in his mouth since he can't handle swallowing. It really stuck, and the fact that Lewis cooperated was huge! Then we proceeded to try some smooshed avocado and we had mild success. He looked at it...stuck his finger in it...and then accidentally put his finger in his mouth!! All that and he didn't gag. We started him on Peptamen Jr Rx formula as well. So hopefully the new stuff will be gentler on his stomach (it's a peptide-based elemental formula specifically for kids with g-tubes and allergies).

Today, Josh and I took Noodles to meet Dr. Neurologist to get the results from the latest MRI. Weirdly, I didn't feel angry or upset at all- the last neurologist was pretty negative. I was mostly just really curious to hear what the doc had to say. He tipped the scales at almost 20 pounds! And his head circumference is increasing on trend for him..albeit small (43.5 cm is evidently the 2% on the charts). Most importantly there aren't any new abnormal signals. His white matter is growing normally! The injury to his brain is still in the basil ganglia, but they have pin-pointed it specifically to deep in the thalamus (that's where the spinal tracks come together). In the end, he didn't want to speculate on what the long-term prognosis would be (he'd prefer to evaluate him around 18 months, if not 24 months). The one conclusion he did find is that Lewis will probably always have motor control/tone issues. Whether this will impact his ability to walk, talk or use his hands remains to be seen. Only time will tell. I guess that's the most overwhelming feeling I had was that things just are the way they are and they will be what they will be. Noodles has a lot more development between 12 - 24 months so we need to maximize his therapies and be as aggressive as possible. The MRI is not gonna change our current course of action. But we are so thankful that it doesn't look like LJ suffered any cognitive deficits.

Some Splainin To Do

Today, the medical staff at Inova Fairfax Hospital completed the latest MRI without a hitch (it also helps to be the first appointment of the day...6:30am). The idea of Lewis waking up scared and panicked in the tube had me really nervous. But with the anesthesia he was knocked out for the count and stayed asleep for the entire time...it made me cry to be there and hold him as he fought the gas mask before they could get the tube down his throat for anesthesia...I'm supposed to protect him right?... I am so relieved everything went fine.

Didi and Lewis waiting for the MRI

LJ is doing just fine. Noodles came home hungry but tired. Everybody is resting now.
Normally we should be receiving a call from the neurologist with the results after the weekend however he is on vacation(talk about waiting on pins and needles). So we have an appointment on September 9th to meet with the neurologist and get the interpretive part of the evaluation. We are really anxious to see another view of LJ's brain and learn more about the exact centers that are affected. He hasn't had an MRI since he was 3 months old. If there are changes and there seem to be improvements we would be so elated!!! But we have to keep things tempered. Doctors (sorry family, no disrespect) most certainly don't have all the answers, and the brain is still largely a mystery. Nobody knows for sure how Lew's little brain will heal. I am so happy that this part is over though!

Hangin Tough

Turns out it was a much needed vacation. Ever since we've been back all Lewis wants to do is stay up from 2am to 5 am every night and snuggle. Thank goodness he isn't screamin that entire time. He had a low fever which might be due to his bottom teeth coming in but we've also been worried about his gtube button being infected (though the nice Dr. Bob in upstate NY told us it wasn't infected). I'm about to hit nervous breakdown level after the last two days I've had.

Monday I got the call from the babysitter while I was at a doctor's appointment (it is so rare that I take the time out for a doctor's appointment for Nate let alone me). LJ had been crying the entire time I was gone and he had managed to throw up...even out his nose....so she wasn't comfortable feeding him anything. Don't blame her. Still baffled though because I thought he couldn't throw up from the Nissen surgery. Anywho. Left my doctor's appointment in a tizzy and got home to find a sleeping baby...breathing quickly...worried about him the rest of the night. But didn't have anymore vomiting episodes.

Then Tuesday I was picking Nate up from camp and I got the call from the nurse aide. Noodles mastered the art of yanking his Gtube out. The whole thing AGAIN, balloon inflated and all! She felt terrible and he was crying and stomach guts were coming all out (sorry for the grossness guys). We were back in the ER in under an hour. When we arrived, Nate asked the person taking LJ's vitals who she was. When she replied that she was the nurse, he matter-of-factly announced that "Noodles doesn't like doctors". Thankfully she wasn't offended by this and answered that she didn't blame him...she'd have him home as fast as possible. While difficult at points it was initally nice to have Nate there with me to keep the air light. As for me, I am thankful to all the nice doctors who have helped us get Lewis better:) Plus this time around, no allergic reaction. They used Optiray instead of Gastroview.

Yahh, we have been to the hospital 3 times in the past three weeks. We have his eyeball surgery schedule for July 27th and his MRI scheduled for August 12th. I am REALLY hoping we can avoid anymore hospital visits until then. Enough is enough.

At least today we had some moderate success with rice cereal. I wouldn't say he was eatting it eatting it. But I would scrape some onto his lips and gums and he got it down without gagging!This is truly a breakthrough for him given the last time he ate solids was the end of February. We will keep working on that. Because it is the hope that inspires...this is what gets us through the rough times.

Full Plate

Actually, I'm too full still to talk about the holiday! Our plates are full with doctor's appointments this week and next.

We had our appointment with the Pediatrician Monday and the Neurologist yesterday morning & I just wanted to bring everyone up to speed.

Pediatrician:
He was pleased with LJ's progress. It's slow, but it's progress for him. He was happy with his weight gain. Folks, he's 15lb 10 oz. His head is 41 1/2 cm. (It's on the small side, but Lewis must take after his mom. I have a pea-sized head!). And he is 25% on the charts. Nate chaperoned us and he asked the pediatrician during the check-up whether he had any "vaxines". Nate also gave his nurse a pretty hard time when it came to giving Lewis his 6-month shots. Here's the lowdown:

Nurse administers first shot. Lewis screams and cries.
Nurse administers second shot on LJ's other thigh. He screams and cries and sheds big crocodile tears.
Nate hollers at nurse "That's enough. No more vaxines. Don't hurt my baby brother! That's enough!"
Nurse explains to Nate that these shots are important for Lewis. They will make sure he stays healthy and doesn't get any bad diseases.

When we got home Nate and I had another conversation regarding vaccines. It went like this:
"Mommy, I don't like vaxines. Medicine is gentler. Medicine is better. But I don't like the grape kind anymore. I like the banana kind." Now I know which medicine is the grape one...but I'm clueless where he got the banana idea. Any opinions are welcome.

The day went on and LJ did fine after the shots.

Neurologist:
He felt Lewis is at about the 3-4 month old marker developmentally. He tested his foot reflexes on a hard surface and found that the placing/stepping are intact but a little slow. Again, totally consistent with his developmental delays. He also mentioned that Lewis seems to exhibit slight hypotonicity.

I discussed the course of treatment regarding LJ's eyes with him too. He defers to the Pediatric Ophthalmologist but felt that the earlier the intervention (ie surgically correcting the muscles) the better off he would be...we don't want him to end up with Amblyopia (a disorder of the eye that results in poor or no vision). He mentioned that some folks treat strabismus with botox??? and or botox in combination with the surgery. Yes folks, long before botox was used to treat wrinkles, docs use it to relax the overactive muscles in order to bring the eye back into proper alignment. Can I get a little of that?? not in my eye, but around my eyes would be nice.

Last and not least, he would like to have another MRI done between 8-9 months old to study the gray and white matter. I Would LOVE to coordinate the anesthesia from the eye surgery with that of MRI. It makes me nervous thinking that all this progress he has made will have been for nothing being laid up with more surgery. And it makes me doubly nervous thinking about putting him under with general anesthesia twice in one month!

Anyways, next week we meet with the stomach surgeon. We're pretty sure it's a foregone conclusion that there is too much scar tissue and that he won't want to operate again. That's the GI doc's verdict at least. We'll also be taking a course on infant massage to see if we can help Noodles relax a little and feel more comfortable after his feedings.

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...

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 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.

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.

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?

More Uncertainty - Friday Oct 24

When we look too far past the present, in this sort of situation, the range of unknowns becomes overwhelming. We took this lesson to heart almost two weeks ago - Jenn and I stick to thinking about Lewis' condition today and we don't get past our hopes for tomorrow, and things go okay. Unfortunately, today's 'family meeting' with the NICU neurologist forced us to move outside that manageable window.

The neurologist's prognosis for Lewis is "very guarded". Physically he felt that Lewis has made progress, but still thought that he was 'hyperexcited'. The MRI showed lesions on the part of the brain called the Basal Ganglia. Apparently it is difficult to differentiate the severity of the lesions at this stage. The Doctor explained that this portion of the brain regulates communication to/from the rest of the body. He expects that Lewis' "degree of deficit could range from moderate to quite profound" and that we should expect that he will require "comprehensive services" to include physical and occupational therapy and a bunch of other stuff that I didn't catch. He wasn't really willing to define "moderate" or "quite profound".

Though he shows no signs of seizures right now, they'll keep Lewis on the phenobarbitol until he outgrows the dose, rather than lowering it. That should equate to about 4 to 6 months. The next MRI will take place in 4 to 6 weeks, which may tell us more.

Respiratory - today was the first day that the doctors referred to the infection Lewis has as pneumonia (at least in front of us). This isn't as big a concern as one might think, since Lewis has been on the appropriate antibiotics since last Sunday. It isn't hard to see how he got fluid in his lungs, since he still isn't managing his secretions (swallowing). On the bright side, he is breathing just fine without any support (other than occasional suction to remove the junk he doesn't swallow) and coughing more - which helps protect his airway.

Feeding - up to 24 ml/h of milk today, which is a full diet, so Lewis has been taken off of IV nutrition. We also learned that his NG tube is in his duodenum (below the stomach) which is why they think he's had fewer digestive problems recently. They may challenge him by moving the tube back up to his stomach, but that's a ways away.

Speech therapy - the therapist spent about half an hour showing us different ways to work with Lewis on stimulating his rooting and sucking behaviors. She feels that he's made some progress this week, but I didn't write down all the details, so that's all I can tell you.

The plan over the next week is to intensify all of the physical therapy and treat the pneumonia. If Lewis doesn't make progress on sucking and swallowing, it is very likely that they'll perform a Nissen Fundoplication and put in a gastric feeding tube, so that he can come home more quickly.

I just reread this post. The part about the neurologist meeting sounds awfully negative. I understand that the docs can't see the future any better than the rest of us. Their task, when informing parents, is just about impossible. I'm not angry with them, or trying to "kill the messenger" - it just seemed to be the best way to convey the tone of the meeting.

Lewis is sleeping peacefully at the moment and apparently threw quite a fit when the nurse woke him up earlier, including audible crying. Nice work little man.

Roller Coaster

Emotions in the NICU completely redefine volatility. By comparison, the financial markets are a bunch of weenies. Almost all the news we received today was positive. Though we are extremely cautious and guarded in our optimism, today is a much better day than yesterday.

Last night's MRI went better. Lewis was sedated, intubated, MRI'd and extubated uneventfully. We're meeting with the neurologist tomorrow to get more detail on the results. Preliminarily, the attending physician told us that there were "some lesions deep in his brain, but overall it looked much better than I expected".

Respiratory - the doctors caved - Lewis won the nasal cannula battle. He had been yanking at it whenever he was awake. Today, they decided he didn't need it. He's been without it since this morning and so far so good. He's still not swallowing his secretions, but he is coughing more, which is a good sign.

Feeding - 18 ml/h right now through the naso-gastric tube, with plans to go up to 21 ml/h tonight. 21 ml/h is full feeding, so he'd be taken completely off his IV nutrition at that point. (He'll still have the IV for clear fluids and meds, but not food). So far, no reflux, the Reglan seems to be working.

Tests - the positive Staph culture from Sunday is not MRSA (antibiotic resitant staph). This means that the antibiotics Lewis has been on since Sunday are the right ones for both the Strep B and Staph.

Full day tomorrow. We have meetings with the speech therapist and neurologist and a couple of other Doc appts. I'm going to go visit Lewis now.

Wednesday 10/22

We're working very hard to stay positive today, and you've been a huge help. There's no possible way that we can return all the supportive messages we've received - via email, phone, mail, in person or even just telepathically. Thank you, thank you, thank you. It means a tremendous amount.

Today was tough. Jenn and I spent a good chunk of the day at the NICU. The good news is that Lewis was about the same. Very cuddly and alert, but still having trouble handling his saliva, mucus and milk - not swallowing. In our meetings with the doctors today, we learned that the plateau of Lewis' progress over the last couple of days is, in fact, a big cause for concern. They believe the inability to swallow is indicative of weak brainstem function. They do not believe that progress in learning to swallow is being inhibited by his meds or the nasal cannula. We were told that Lewis' impairment is likely to be significant (though they've no idea what form it may take), and that he is not close to coming home from the hospital at this point.

Respiratory - pretty much unchanged, still on a nasal cannula at 3 l/h. It looks like Sunday night's infection symptoms were caused by some fluid aspirated into the lungs, x-rays continue to show that things on the right side are a little hazy. Tests showed Strep B and Staph in the sputum cultures, but everything else was negative. Antibiotics were changed to treat these bacteria.

Feeding - continuous feeds had to be turned down (to 10 ml/h) last night because Lewis was continuing to have reflux. Feeds were back up today (15 ml/h) , and Lewis was tolerating them okay. He's now on Reglan, in addition to Zantac. The reflux is a real concern at this point. If it does not respond to these medicinal treatments, they will consider a surgical repair called a Nissen fundoplication. Either way, he'll eat through a tube until he learns to suck and swallow effectively, but we're told that some kids do go home while still being tube fed.

Neuro - last night's MRI was a no-go, Lewis was wide awake and wiggly at 3AM (Jenn points out that he's sharing the room with a dozen nurses, so cut him some slack). Tonight, he'll be sedated and intubated (put on a ventilator) for an MRI. If we understand it right, the results may tell us if there is significant damage to any part of his brain. An "all clear" MRI is a better sign, but doesn't mean we're out of the woods. More on that tomorrow, I guess.

Thanks again for all your support. We wish we could get back to everyone individually, but in the interim, please know that we're hanging in there, and we really appreciate your support.

Lots of Moving Parts

We spent most of the day with Lewis today. We learned a lot about the care he will be getting from physical therapists and speech therapists in the coming days and weeks. At first, much of it will be focused on getting him up to speed to eat normally. Many of the skills he needs for eating are predicated on stronger breathing, which will just take time. (Example: you have to be able to hold your breath in order to swallow effectively. This means that you have to be off the nasal cannula, which provides pressure to keep the lungs inflated and makes it difficult to hold your breath). This reminded us why it is so hard to predict anything at this stage - there are lots of moving parts...


Anyway, the Speech Therapist has all sorts of exercises to help him move his tongue and jaw properly for feeding. ("Speech therapy" is sort of a misnomer, at this stage).

No one is quite sure how long it will take to get him up to speed, but the therapists seemed to have a "when" rather than an "if" attitude, which was nice. We'll know more later in the week as they complete preliminary evaluations.

In other news - Lewis moved to new digs today.

The NICU team removed the IV line that was going through his bellybutton and replaced it with one through his foot. That allowed him to move to a bed that should be a little bit more comfy for him. (If you didn't get Nate's school picture last year, check out the right hand side of Lewis' crib ;)

Feeding - changed to "continuous" feed through the nasogastric tube, regulated by a IV type pump. Lewis had been having some reflux problems, they're hoping this will help. Upped to 15 ml/hour.

Respiratory - still congested and having problems handling it - he continues to be suctioned pretty frequently, but his cannula is down to 3 liters of pressure (from 5 a couple days ago, meaning he is doing more of the work of breathing on his own).

Tests - tomorrow, we should have final results on all the tests from Sunday. Tonight, Lewis is scheduled for an MRI. We've been told that this won't tell us much, but is mostly helpful to establish a baseline for future scans.

Spirit - good. Lewis is moving around a good bit - last night he pulled his feeding tube all the way out. I think he got upset because somebody said he was fat.