the hips don't lie (part III, at least)

Last week flew by so quickly. There are still a bunch of things we are working on. There is a lot to do and we're trying not to get overwhelmed by all the things that need to be accomplished.

We started the week out with an adventure. The whole family including Nanny & Babu went out to dinner down the street at Tap & Vine. A lot of stress that had built up surrounding the adventure, but we figured we could venture out with the support of the boys' grandparents. Jenn took the portable feeding in LJ's little backpack( see below pix). LJ even slept in his sling for a little while allowing her the rare ability to eat with both hands. It was totally worth the hour of preparations getting the equipment rounded up, the kids dressed for the cold, piling everyone into the car and waiting 15 minutes for a table. Things went better than expected and now that we know we can do it, there will be more fun outings!


We also got a second ultrasound of Lewis' hips and with it, good news. It came in the midst of Lewis' first snow/ice storm this week. Unfortunately, Jenn forgot to move the car down our very steep driveway. Luckily Bop and his trusty SUV came to the rescue. He drove us to Fairfax INOVA Hospital for an ultrasound of LJ's hips. (See the original "Hips Don't Lie" post from December and the "Ahoy Matey" post from a couple weeks back). After going back to the pediatrician again, we were given a referral to get a second opinion. This ultrasound was the precursor to our appointment this Monday. The doc who read the ultrasound on site says there's no problem. Hopefully the new orthopedist will agree.

Speech therapy is going pretty well too. The therapist thinks his sucking is a bit disorganized but it's to be expected. She explained that infants learn the suck, swallow, breathe, suck, swallow, breathe pattern. Lewis is doing the suck, swallow and then breathe, breathe, breathe, breathe before he takes another suck and swallow. With practice that should improve. She commented that his whole affect was changed since he has been off the Phenobarb (Did we mention he's off the phenobarb? Maybe that's why he doesn't sleep anymore...). The speech therapist really thinks he is starting to look more and more alert. We are going to be having a joint meeting with a nutritionist soon so that everyone can get on the same page with LJ's feedings. In the meantime our homework for the weekend is getting baby Lewis' fingers in his mouth, getting him to suck on these neat little nuk brushes she's given us, and using a tiny massager to get him used to different sensory things.

We've even been trying to squeeze in a little "me time" in between all the preparations + doctor's appointments + visitors. Of course this is all made possible by our lovely parents who have been helping out. Can I tell you how nice it is to leave the house all by myself? Anyways, I went for a haircut and facial then met up with a friend for dinner tonight. Josh is getting a nice respite tomorrow - going on an overnight hunting trip with the boys this weekend.

LJ's Aunt Joanne and Uncle Jeff will be here for a visit this weekend. And although our "to do" list seems to be growing longer by the minute, we'll be able to tackle it with the help of some free babysitting [hello, grandparents!].

sniff sniff

Josh hasn’t made time to write since last weekend, so I’m stepping in to fill the void. A lot has happened in the past week. Nate has gotten over his barking croup cough and seems to have passed his germs to both Daddy and Mommy. Luckily, Lewis seems to have dodged it so far, but something has kept him from sleeping very well for the last several nights – so we’ve been using any spare time we can find to nap. Aunt Annie and Uncle Danny will be coming for a visit today and Nanny and Babu are coming to help out this week.

We’ve had a little trouble getting into a pattern after the inaugural excitement last weekend. Nate insists that our new President calls him on his cell phone to discuss the state of affairs! Nate is too cute and without any prompting he started drawing the road from our house to the airport to school and to the grocery store (and what road would that be?). I guess art imitates life!

And you know how everyone has a list of things they would like to accomplish in their lifetime? Well we've had many evaluations of Lewis this week. The Arlington County "Parent Infant Education Program" aka PIE had a physical therapist and an early educator come to observe Lewis this past week. The occupational therapist from a private provider has also been coming out to the house to work with Lewis as has a speech therapist. In all these appointments, we've been making lists of goals for Lewis. Things like,"beginning to eat like a typical infant", "learning to walk", "some time together to enjoy each other", "bringing hands to midline", "postural control", "improving visual motor skills" and "learning to ride a motorcycle" (wait, that one is being scratched off the list).

I never thought we'd start this early, but its pretty darn cool to see a little bit of progress. Lewis is beginning to have more head control and he can sit in his Bumbo seat for up to 10 minutes. He loves to follow the sound of Nate's voice and watches his big brother’s every move. Though both eyes are now having problems, Lewis’ eye patch seems to be starting to correct the left eye. And he is learning to improve his nutritional suck when he gets his feedings. There is much hope.

Ahoy, Matey.

Nate picked up Croup on Thursday. It seems like he's been sick more often than not in the few weeks that Lewis has been home. He's on the mend now, but, since Croup is very contagious, we've been trying to keep Lewis and Nate separate as much as possible. Its like two single parent families in one house. Anyways, Jenn tells me that Lewis had quite a busy week and even managed to fit in an appointment with the pediatric ophthalmologist early this morning (Saturday).

Earlier in the week, Lewis had a followup with an orthopedist about his hips. There had been some initial concern in the NICU that he might have some hip problems. After a hip ultrasound and a consult with an orthopedist at Georgetown, he was given the 'all clear'. At least that's what we thought. On the discharge report, it notes that the hips continue to be an area of concern. So Jenn took LJ to the followup appointment earlier this week. That didn't go so well. The doc spent a couple of minutes with Jenn and Lewis and prescribed a pavlik harness, full time for several weeks. No new ultrasounds or x-rays. To date, we've been pretty good about following doctor's orders for Lewis. This time, we're seeking a second opinion straight away. Pavlik's harness was designed by barbarians to torture their enemies. Lewis wore it for two inconsolable hours before we changed course. It is complicated to put on and difficult to adjust. Despite claims to the contrary, you really can't change a dirty diaper around it. We're not about to use it as a prophylactic for a month, just in case.

On a brighter note, speech an OT got started in earnest this week. Now that Lewis is less congested, he's back to working on sucking to develop positive associations while he's being fed. We're already seeing a little bit of improvement in his sucking this week.

As we mentioned in the last post, Lewis' left eye was a concern when he visited the neurologist - it is crossed and not tracking with the right ere. This morning's doctor visit was the first to address that. The eye doc diagnosed Lewis with strabismus. The treatment is to patch the good eye and force the brain to use the eye that is not tracking properly. The good news is that the eye seems to be well formed physically, so there's a decent chance this treatment will correct the problem - he's supposed to wear the patch 2 to 4 waking hours (more or less all day, for a 3 month old) for a month. Luckily, it doesn't seem to bug him too much. We're off to hijack some ships. Please let us know if you have any suggestions for a good pirate name.

Noodles Unleashed!

We've been busy since the weekend and haven't had much time to post. Jenn and Aunt Kara have been taking Lewis all over town to various doctors and therapy appointments. The schedule will get a little bit more sane in the coming weeks, once we get through all of the initial specialist appointments. Thank goodness Kara is here to take care of us this week - three to two is a much more sane ratio of adults to children :)

Last Friday, the heart/lung Doc liked what he saw so much that he decided Lewis did not need to be hooked up to the monitor anymore. In the course of 30 seconds, Lewis lost 5 pounds (it was a heavy monitor - the size of a small laptop) and a bunch of wires. He's down to just the NG tube attached. Here are a few health updates:

• Lewis' left eye has become a concern. Over the last few days, it has stopped tracking as well as his right eye and seems to be crossed. The neurologist that he saw today has suggested we get him checked out by a pediatric eye doctor
• The rest of the Neuro visit went well. The doc definitely felt that Lewis has some deficiencies, particularly on his left side, but he was reasonably positive in his overall assessment and he thinks that we'll be able to wean Lewis from the phenobarbitol (seizure meds) soon too
• Lewis had a followup visit with the surgeon who operated on his tummy today too. The surgeon reassured Jenn that the retching is more or less like burping and not that unusual in this sort of situation. It is apparently more scary than severe. He suggested that we stop the feedings in the middle and "vent" Lewis' NG tube - effectively burping him - for a few minutes in the middle of each feeding
• Speech therapy started yesterday. We're working on getting Lewis to take a pacifier while he is being fed through his NG tube

Finally, we want to thank everyone, again, for being so supportive. Your words, deeds, thoughts, prayers and encouragement have been key. Each day gets us closer to being back to normal. We appreciate your help and encouragement more than we'll ever be able to say. Thanks again.

Oh, The Thanks You Can Thank!

We've been putting off writing this particular post for a while. Maybe we were hoping that we'd suddenly have more time or that we'd figure out just exactly what we wanted to say. Well, the days in 2009 still seem to have just 24 hours. After a lot of thought, we still can't put this in words properly, but here goes.

"Isn't it great that he's out of the hospital?" we're asked all the time. Yes. No two ways about it. We're very happy to have Lewis home. Still, our emotions about the NICU experience aren't nearly as one way as you might expect. Weaving our way through the obstacle course of Lewis' care these last couple weeks, we're frequently reminded of ways that we miss the NICU. I'm sure this sounds a little odd if you haven't been through something similar. We're starting to understand how much we were all being cared for while Lewis was a patient. In a sense, we were in a cocoon that allowed us to worry about Lewis' progress, without worrying about so many other things. We had a place to go where we could focus on nothing but Lewis.

So, to the NICU nurses and staff, we want to say thank you. Thank you for taking such wonderful care of Lewis. Not just great medical care, which he received, but for cuddling him so much at all hours (spoiling him rotten) and for keeping him comfortable. Thank you for advocating for him when we couldn’t be there, for styling his hair, making him drawings, taking him for walks and cooing over him. Thank you for taking care of him as if he were your child.

It wasn’t just Lewis you took care of. Thank you for answering, so patiently, our endless questions and 3 am phone calls. For helping us learn to speak up on Lewis' behalf and giving us so many great ideas to help him. Thanks for finding happy things to talk about with us while Lewis slept, and for sharing little bits of your lives with us. Thank you for turning a cold, sterile ward into a place where we felt at home spending hours with our son.

There are too many of you to mention here, and we don't want to start listing names online anyways. This has been a tough time for our family. Thank you for helping us through it.

Catch 22

We've slowed Lewis' feedings down to an hour again (he was geting 100ml over 1/2 hour, every three hours) and we've got him on a slow continuous feeding overnight. He still gets the dry heaves either late in the one hour feedings or shortly after. He seems to do okay on the continuous feeds. The retching is upsetting to us and looks painful for Lew, but he seems to recover from it very quickly. Jenn got through to the GI doc again today, since the last round of changes didn't help. The Doc decided to put him on Erythromycin. It is usually used as an antibiotic, but apparently also works as a 'motility' agent too. The theory is that his tummy is getting full, since things aren't moving out fast enough. This will either solve the problem, or get things to move through, um...too fast, if you will. If it doesn't solve the problem, we will have to go back to continous feeding for a while and work our way back up. (We'll also may have to do a few extra loads of laundry).

Apparently, most kids in this situation grow out of many of the feeding issues. Only Lewis needs to get enough calories in order to grow, so it is important that we find a solution, shorter term. The GI Doc seems to think this is only a temporary setback, so we're hopeful it will be fixed soon. Lewis got through his 6 pm feeding tonight with no problems, so far so good on the 9. Meantime, he's still getting through his cold, and is too congested to work on eating by mouth at all this week.

Current Events

We've started off 2009 at a furious pace...

• Jenn took Nate & Lewis on their first car ride together to pick up Nanny & Babu (Jenn's parents). Technically, this was before our last post, but worth noting. Both boys did very well in the car.
• Lewis is still having problems handling his feedings - retching either towards the end of the feed or just after. This is the downside of not being able to burp. On Friday, Lewis went to Fairfax Hospital for an abdominal x-ray to make sure there were no obstructions causing the problem. Lewis got the 'all clear'. In the meantime, we're doing what we can to prevent the retching episodes (slowing down the pace of his feedings, making sure he's upright when he eats). When he does have problems, we disconnect the feeding pump and 'vent' his NG tube with an open syringe barrel. Eventually the gas gurgles out. It's no fun for anybody, so hopefully we'll find a solution soon.
• Sometime in the last few days, Lewis caught a cold. He's been all congested and it got a little worse yesterday. We went to urgent care to get a chest x-ray, just to make sure it wasn't pneumonia. All clear again, just a cold. Jenn was sick yesterday too, with a 24 hour stomach thing, so at least going for x-rays gave Lewis and I an amusing way to spend our time while she recovered. Lewis isn't quite himself yet, but we hope he's on the mend. Jenn is feeling much better.
• Lewis started physical/occupational therapy and speech therapy today with his new providers. He was able to relax and did well - he even pooped during the bicycle exercise! Unfortunately, he can't go for speech therapy again until his sniffles clear up, so that's next week's business.

When we aren't taking care of Lewis and Nate, Jenn and I are spending every free minute coordinating Lewis' appointments and care and wading through endless levels of bureaucracy with a variety of different organizations. On the bright side, Nate likes to hold Noodles so much that he will now voluntarily wash his hands without a tantrum. Thank goodness for small victories :)

Happy 2009

This is our New Year's post, only we're a little behind. Remember what we said about Lewis sleeping for hours straight? Turns out, he was just toying with us. He's been staying up all night to ring in the New Year for the last few nights. It's a wonder he's the one going bald.
We hope his hair will come back quickly.

Yes, you can have a fauxhawk and a baldspot.
(Do not attempt with a mullet)

For the last couple of days, Lewis has been having a little bit of trouble handling his feedings. Particularly at night. He gets about 3/4 of the way through and starts to retch some. He can't really throw up, because of the Nissen surgery, but it seems like that's what he's trying to do. He's seen the GI doc a couple of times for it, and we think we have some answers. We've been able to help the symptoms a bit by changing his posture and by venting his tube a little bit. They took an x-ray today, just to be sure there was nothing in the way (all clear). We'll try continuous feeding overnight tonight and see whether that helps. When the retching does happen, Lewis recovers very quickly, but it is clearly something we need to solve ASAP. In the meantime, we'll sleep when he lets us - just like the parents of any 2 month old.

Aside from feeding challenges and male pattern baldness, Lewis is doing well. He still makes a sport of tugging on his NG tube. If he has any say, there will be no recession for the company that makes that kind of tape. The sore on his incision is improving. We're looking forward to starting his PT and speech therapy next week. He's lost a little ground in feeding by mouth - still swallowing fine, just not very interested. Hopefully speech therapy will get him back on track.

Look into my eyes. You are getting very, very sleepy....

In the meantime, Lewis is venturing further afield. Jenn has learned to operate the feeding pump from a small backpack, so the two of them can survive in the wild quite nicely. They don't even need to come home every 3 hours (but it makes things a lot easier). Lewis is busy giving his Nanny and Babu (Jenn's parents) a hard time tonight. So far, he hasn't peed on them, but the night is young.