Sunday, July 25, 2010

Light on News, Heavy on Pictures

Wow we are really slacking on the updates... sorry! We don't really have much to talk about but we have a lot of pictures to share! Before we get to those, I'll tell you what Lewis has been up to the past week or so. My parents and sister came up to visit us for a couples days so we decided to take Lewis on his first trip to the beach. He loved it! Actually he slept the whole time... but I'm sure the sound of the waves was soothing! We passed him around and got his first beach pictures... maybe next time he'll be awake for them.


We also had another appt with neurosurgery. This time the appointment was with Dr. Foody. A couple good things came out of that appointment. Dr. Foody gave the ok to hold Lewis upright. We had been doing that for short periods of time, but now we can do it whenever we want! It's exciting to be able to hold him on my shoulder! Dr. Foody also commented that Lewis has good leg movement. We love to hear that! Dr. Foody also said he doesn't want to see Lewis again for 4-6 weeks. YES! I was concerned before we went because I had noticed his head circumference had gone up a little. (I measure it crazy-often) Dr. Foody wasn't concerned and I just have to remind myself that heads grow.


So Lewis is getting very close to consistently sleeping through the night. He slept at least 8 hours for a couple nights in a row. He'll do it for a few days then wake up once the next night. I'm sure pretty soon he'll be sleeping till morning every night! He also has been smiling and laughing a lot. We need to get a picture of it because I'm pretty sure it's the cutest thing I've ever seen!


Like I said, not much news... but I guess that's a good thing! We do have TONS of pictures though, so enjoy! There will be many more soon, I'm sure!


So bright!




So we're a little late starting the monthly growth pictures. We want them to all be in this chair but he can't exactly sit up yet so he's kind of just propped up there. Yes, he started to fall over after this picture. And yes, I am standing right above him ready to catch him when he started to tip. Yes, he hated it.


Chilling with Dad



Doesn't quite know what to think of the Bumbo seat yet...


Family photo!



Love that little smirk!



Our little elf!

Wednesday, July 14, 2010

First Week Home

I'm writing this blog from Coleman's computer because mine crashed. :( Luckily I back up all my important stuff (pictures) every once in a while so I didn't lose those. When I came home from the hospital, I came home to 755 work emails... mainly some professional listservs that I subscribe to. Those are not backed up... I'm so disappointed... or not. So it looks like we'll be getting me a new computer. I wanted a new camera so I could take better pictures of Lewis but oh well, that will have to wait.

Since our last post, we had a couple doctor's appointments. First was the neurosurgeon who measured Lewis's head circumference and looked at the incision on his back. Seriously? I drove to Grand Rapids for that? I could have told them what his head circumference is and sent them a picture of his back. Oh well. They want to see him again next Wednesday. Right after that appt we'll be visiting the Conductive Learning Center. I'm pretty excited about that! Lewis also had an appointment with his pediatrician. The nurse who was checking Lewis out before the doctor came in kept going on about how that was her first time seeing a baby with Spina Bifida and how he's "so fragile." I can't blame her for not knowing anything about SB... I didn't either. But trust me, he's not fragile, he's a pretty tough little guy!

Lewis has been doing great on his new at home schedule. He's been giving us 6 hours straight of sleep at night. Then we just feed and change him and he goes right back down till morning. Pretty good for the first few days at home... I just hope it's not a fluke!

Lewis got some exciting visitors this week... his Grandparents! Coleman's parents came to visit on Monday and stayed until this morning. He got to spend lots of time with them and even showed them how much he loves (or hates...) getting a bath! They even watched Lewis while Coleman and I went out for our anniversary! We had a nice dinner and Lewis got to hang out with his grandparents. (Those hundreds of frozen bottles of breastmilk we brought home with us from the hospital are going to come in very handy when we want a night out!) We all had a great time and I'm sure they'll be frequent visitors! :)

With Coleman's parents came the final member of our family... Gauge! He's been staying with them since Lewis was born. We really appreciate them watching him and I know Gauge gets spoiled! Gauge felt a little abandoned after being away for an entire month. He even left his food untouched a couple times while he was gone. If you know Gauge, you know that is VERY uncharacteristic. But now that it's just the 4 of us here, he's starting to get back to his playful self. I think he knows we're not going to leave him.

Gauge and Lewis might not know it yet, but they're going to be best buds. We were very excited for them to meet. Gauge is just very curious of Lewis... always sniffing him. He's been very good with him so far. He knows not to go on Lewis's blanket (even though we let him lay on it in the picture) and he knows that he can sniff Lewis's face, but not touch it. He still has a few things to learn... like don't shake your rope toy next to the baby's head... but he'll get it. Here are a couple pictures of one of their first encounters.

Lewis doing his stretches while Gauge watches curiously


Sniffing a finger


Checking each other out


Best buds :)


Oh and check out this link:


It's Lewis's hospital picture! hahaha! My favorite is the last one! In all these pictures, Lewis had just had the pacifier ripped out of his mouth. They use it to hold the baby's head straight then they pop it out and snap a picture. The result is pretty funny! For some more laughs, Coleman and I recommend checking out some of the other dates at www.spectrumbaby.org. Some of the names are ridiculous... poor kids!

Sunday, July 11, 2010

The First Days

So we've been home for 4 days now and things are going great! We're starting to settle into a routine. Lewis wakes up around 7-7:30 and gets fed and changed. We play with him for a while and then it's nap time. We repeat this cycle every 2.5-3 hours until 9-9:30. Then he gets fed and changed and goes right to bed for the night. Lewis is doing pretty good on this schedule. I guess that's one benifit of being in the NICU - your baby comes home and is used to being on a routine. Ours is a little less strict and works around our daily activities though. He seems to be taking to our routine pretty well. Last night he went from 11 pm - 4am without waking up!

Lewis has also had some visitors come by to see him this weekend. Some of our neighbors stopped over to meet the little guy. Some of my family stopped in today on their way home from Ludington to meet Lewis. He loves meeting new friends. Anyone that's in the area and wants to stop by is welcome as long as you follow 2 rules: 1. Call us first. 2. You are healthy.

Lewis has also had some exciting new adventures since he's been home. He's been on a few walks around the neighborhood, gone to the farmers market, and even gone swimming at the neighbor's. Ok, more like sleeping in his stroller next to the pool while mom and dad took turns swimming but he did have is swimsuit on!

Anyway, this whole baby thing is causing a lack of sleep for the grownups in the house - so I'm going to retire for the night. You know what though, the more I stay up the more I get to spend time with my little buddy. So it's OK!

Here's some pictures since we've been home:

Welcome Home Lauren and Lewis!


Lewis is ready to go swimming (or napping)


I love baths!


Just Kidding!


Lewis love's hanging with dad!


Thursday, July 8, 2010

We're Home!

First off - Happy 1 month birthday, Lewis! It's hard to believe that he's already a month old. Crazy. The doctors and nurses gave Lewis a pretty sweet present today, too - his discharge papers!

Very early this morning, Lewis went in for a renal ultrasound. The VCUG test yesterday showed that there was some reflux which was confirmed with that ultrasound. Basically the reflux is a small amount of urine going back up toward the kidneys. It's something they will have to monitor. Nothing too pressing though since his appointment with the urologist isn't until October.

After his tests were finished the doctors starting working on his discharge paperwork. We stopped in to see Lewis after we got ready for the day. The nurse told us to give the Neurosurgery PA a call to go over some things. She went over the signs of shunt malfunction and answered any questions we had. We'll be seeing them Monday afternoon.

After that phone call we decided we should finish packing up our room at the Renucci House. It's unbelievable how much stuff gets accumulated over a month's time! Once the room was packed, Lauren headed over to feed Lewis while I loaded everything in the car. That Honda was as packed as it will ever get! I don't think one more thing would have fit in that car (safely).

Shortly after I finished loading the car, I headed up to Lewis's room. We sat down with Dr. Shaw (one of the Neonatologists) to go over his discharge papers. The papers pretty much outlined all the things that Lewis has had done over the last month and all of his future appointments. After our talk with Dr. Shaw, he said we were free to go! Unfortunately we had to stick around a couple more minutes.

The nurses were trying to find some more of the new Vigilon. It seems that Lewis had the entire hospital stock in his room! They said a box should be in tomorrow. If so, I'll have to run back over to GR to pick it up. If not, they sent us home with his old style dressings to hold us over until we can get our hands on the Vigilon.

So after that whole ordeal, it was time to make the procession to the car! We got stopped by about 10 nurses on the way out of the NICU who wanted to see him one more time before we left. The greeter at the NICU wanted to see him and so did the information lady at Ramp 6 who has seen us walk by her desk 10 times/day for the last month. He was a pretty popular guy today. Then, finally, we made it to the car.

The trip home was pretty uneventful. Lewis was really excited to see the world outside of the NICU and tried his hardest to stay awake - but it didn't work. He was fast asleep as soon as we got on I96. We got home, got the car unpacked, fed Lewis, fed ourselves, and started the unpacking process. We got tired of that pretty quick and decided to take Lewis on a walk. We haven't really been outside in the last month and neither has Lewis. So we got out the stroller and took Lewis on his first walk! He had to lay on his belly in the stroller but he loved it. Actually, I don't know if he even knows we went on a walk, he was asleep the whole time!

Things are going to be a little weird around the house for the next few days. We're not used to having him around 24/7. It seems like there is so much to do - feedings, diaper changes, dressing changes, medications. Not to mention that we haven't gone grocery shopping in a month, the lawn needs mowed, etc. We'll be busy, thats for sure. But I'm sure that in no time this will all be the norm and we won't think anything of it. We are beyond excited to have Lewis home and starting getting our life back on track!

I just want to take a minute here and thank everyone that has been praying for Lewis and everyone that has been following along over the last month. We have gotten so many words of encouragement. We truly feel blessed to have such great support. Thank you! Please continue to keep Lewis in your prayers - that his back heals, his shunt continues to work, and that he adjusts to home life with ease.

Here are some pictures from Lewis's big day:


Lewis's first time on his back


Lewis getting dressed in his "going home" clothes - which also happens to be the first outfit he's ever worn




On our way out the door!


WHAT IS THIS CONTRAPTION?!


Going on a walk


Too sleepy for a diaper change...it's been a long day!

Tuesday, July 6, 2010

Good News!

Greetings from NIMS 8. I decided to bring the computer over so I could write the update while Lauren nurses Lewis. I don't have a whole lot to do while all that is going on so I figured this would be a good way to spend my time. Plus, maybe we can actually get to bed at a decent hour tonight.

Lewis was pretty sleepy last night and slept for 6 hours. Now Lauren and I thought that was a good thing - apparently not. The doctors thought that since he was "acting different" that he may have an infection. They drew some labs which both came back fine.

They also noticed that his growth curve really wasn't a curve. It was more of a horizontal line. He's maintaining his weight pretty good, just not gaining anything. They think he's just not getting enough food throughout the day. He had been on an on demand feeding schedule - eating what he wants when he wants. He ended up usually going 4 hours between feedings - so only eating 6 times a day. We've put him back on a scheduled feeding every 3 hours. That will give him 2 more feedings every day. Hopefully he starts showing some weight gain!

Today the nurses paged Dr. Mann to come by and reevaluate Lewis's back. We were hoping he would also update us on Lewis's possible discharge date. He came by a couple minutes after I got back here from Muskegon. He peeled off Lewis's dressings and decided it looked good enough for the stitches to be removed! So after he did that he explained the spot on Lewis's back. While it's still grayish, it is healing. The grayish is what he called a "natural barrier." There's actually skin underneath that's healing just fine!

After he was finished looking at Lewis he ordered a new type of dressing to go in his back - something called Vigilon. Its basically a gel sandwiched between two pieces of film. One layer of film will be removed so that the gel goes directly on his back. It's supposed to keep the healing area moist.

Then it was time for his update on Lewis's discharge. Probably the best thing I've heard in a long time - Thursday! He said that with this new dressing theres no reason that he cannot sit in a car seat to get back to Muskegon! So if all goes as planned - we'll be home in 2 days! He'll have to keep the dressings on for a couple more weeks but as long as we are comfortable changing it, they don't have a problem sending him home. Dr. Mann will schedule a follow up appointment for him 2 weeks after his discharge. We're just hoping that after all of this, his lack of weight gain won't keep him here for longer.

Thats about it for today. I'm sure we'll have lots of thing to talk about again tomorrow! Here's some pictures:






Monday, July 5, 2010

Happy 4th of July!!

Happy 4th of July! It's been a fun and busy holiday weekend for us so that's why it's been a few days since the last post. Becky left on Friday and a few hours later, my parents came in to town for the weekend. So I guess I'll run through the updates on Lewis from the past couple of days.

Coleman mentioned in an earlier post that Lewis's fontanel seems sunken in. Apparently that's a good thing. I was in the room when neurosurgery came one day and the first thing she said when she saw him was, "Oh! A nicely sunken soft spot!" The fact that it's sunken means that the shunt is draining, which is a very good thing. It's possible that there was a blockage and it flushed itself out. It's also possible that the shunt was just set too high. They may still change his settings before we leave but I think they'll wait until right before discharge. We're still leaving him laying flat to reduce the pressure on his incision from the inside.

So my favorite piece of news from the weekend is that Lewis got to move from the Neonatal Intensive Care Unit to the Neonatal Intermediate Stepdown Unit. I think it was just a matter of needing more space in the NICU section but it does mean that we're one step closer to leaving this place altogether! I got to carry him from the NICU hallway to NIMS which was super exciting since I've never carried him anywhere before. Lewis loves it in NIMS and so do we. The rooms were designed to have one baby in them but there are so many babies that there are usually 2-3 per room. Lewis only has one roommate and it will likely stay that way since I breastfeed and need room to put up a screen. It is MUCH more private and much quieter also. He sleeps really well over there and the nurses love him. They all talk about how he's such an easy baby to take care of. We are over there almost all day long changing his diapers and feeding him so we pretty much do their whole job!

Today we gave Lewis his first bath. I'm not sure how clean he actually got... but he had to be cleaner than he was before. Right before we put him on his little pad to get washed on, we popped his pacifier out of his mouth so that he wouldn't spit it on the floor. (Although if he did, we wouldn't have minded. Once the pacifiers hit the floor, they throw them away... unless we snag them first. We've collected 4 I think... haha! Don't worry, we'll sanitize them!) Anyway, so we popped out his pacifier and he popped in his thumb and started sucking! It didn't last long but it was adorable. I saw him do it one other time when he was getting his nuclear scan. I actually interrupted the doctor giving me important information to scream, "He's sucking his thumb!!!" The doctor has kids, so he understood... haha! Coleman got to see it this time so that was exciting. Lewis didn't scream too much during his bath... he did pee all over the pad though!

A couple weeks ago plastic surgery gave us July 7 as the earliest date they thought that Lewis would likely be going home. They haven't been doing rounds all holiday weekend but tomorrow we're going to ask for an updated estimate when the come by. Everyone we talk to thinks that his incision is looking a lot better. We'll see what plastic surgery has to say! Thursday Lewis will be one month old and we'd love to have him celebrate that birthday at home. Seeing the fireworks on the 4th was bittersweet. The fireworks were great and I loved having my parents in town. It's just that I'd always imagined celebrating that holiday with Lewis somewhere other than at the hospital. The 4th was a reminder of just how long we've been here. The end is in sight, though! And we'd live here the rest of our lives if it meant we got to hang out with our little guy! He's the best :)

Some pictures from the weekend:


He loves his book! What a smarty pants!




This one cracks me up! I'm not quite sure how we caught this on camera... he was fast asleep.

His first bath... before he started screaming.

Good job buddy!

Thursday, July 1, 2010

No Surgery Today!

Coleman back reporting today. We went down to be with Lewis at 8 this morning. None of the doctors had been there yet to see him. We decided that before things started happening we should go grab some breakfast. So we headed up to the cafeteria to eat. When we got back down to Lewis, Dr. Foody's PA was checking him out. She felt his soft spot and measured his head circumference. She thought everything felt ok but wanted an ultrasound to confirm. About a half hour later, the ultrasound tech came in. She gelled up his hair and started the ultrasound. It only took about 5 min. Lewis did really well, too - considering it was 9:30 and he hadn't eaten since 3. Dr. Foody was in surgery while Lewis was having his ultrasound so it took about another hour to finally hear what the verdict was. No surgery today! We were both very happy to hear that! Seems that everything is working properly.

So after we found out that there was no surgery, our next mission was to get some food in Lewis's belly. He was pretty hungry at 11 when the doctors finally wrote in that he could be fed again. They went right back to the "eat however much he wants whenever he wants" routine. Sounds good to us. After Lauren fed Lewis, I grabbed my things and headed over to Muskegon to go to work for the afternoon.

While I was at work the doctors decided to make one more adjustment to Lewis's shunt. They changed it from 1 to 0.5. After his adjustment his soft spot was really sunken in, like it was draining too much fluid. They are going to come back tomorrow and see how it looks. Actually, they will probably be coming back every day regardless to check his head and make sure everything is working ok.

Also, while I was at work, Lauren's friend Becky came up from St Louis to visit. Lauren's glad to have someone to hang out with while I'm at work. Unfortunately, Becky's stay will be a short one, she's headed back home tomorrow. While she's headed south, Lauren's family will be headed north to come visit for the weekend. Lewis is excited to see them again.

Well, til tomorrow -

We used the ultrasound gel to give Lewis his first mohawk!



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