Wednesday, June 30, 2010

Shunt Revision

So the big news of the day is that Lewis will most likely need his first shunt revision in the morning. Dr. Foody did not like how slowly his shunt drained during the nuclear test. He also didn't see as much pooling at the end of the catheter as he would have liked. I think there is a night and day difference in the feel of his fontanel and in the swelling around his shunt. Dr. Foody will feel it in the morning and also do an ultrasound to determine if the surgery is necessary. He's booked an OR just in case. If surgery is necessary, he'll use the same incision sites and just replace the blocked portion of the shunt. We're praying for no surgery, but we'd rather just get it over with than bring home a baby with a blocked shunt. Shunt revisions are common and Dr. Foody has done too many to even count so Lewis will be in good hands.

I spent a good 5 or 6 hours holding Lewis today. He would nurse, fall asleep, nurse, fall asleep... it was great. I think he's kind of getting spoiled because sometimes he doesn't want to go to sleep in his bed now. That will change when we get home but while he has to be here, I'm going to shamelessly spoil him.

In preparation for the surgery, Lewis won't be able to eat after 3 am. The surgery could happen any time between 8:30 am and 11:00 am. I don't know if we've mentioned it before... but Lewis definitely lets you know when he's hungry... very loudly. So tomorrow morning should be interesting. Poor guy!

We'd really appreciate prayers for Lewis tonight. We always pray with him at his bedside while we're down with him. Tonight we made sure to tell him what a brave little guy he is. We told him that Jesus loves him and will always protect him and keep him safe. Our prayer is that he'll grow up knowing that.

Finally, we got some really cute pictures of Lewis tonight... so I'll leave you with those. Enjoy!




Lewis with his Daddy

Using his strong neck muscles to check out Dad... we love to see him from the front... we don't get that view very often!

Sleepy boy

Tuesday, June 29, 2010

Nuclear Testing

Today ended up being an eventful day. A lot of sitting around, but still eventful. I got ready this morning and called down to tell the nurse that I was available to nurse Lewis whenever he got hungry. He had already eaten twice this morning and took 80mL each time! Since he had just eaten, I got some stuff done around here until it was time for the next feeding. I got that call at about 1 and was over at the NICU by about 1:15. That's when everything started happening... Dr. Foody had been by earlier and decided that there was no need to wait a couple days to do the Nuclear test of the shunt so he gave the orders to have it done today. As soon as I got down to feed Lewis, we got the call that they wanted him down in radiology at 1:45. So I quick nursed him. We didn't really have time for a full feeding... just a snack. As the nurse was running around getting stuff ready to transport Lewis the physical therapist came down to check on his progress since the last time she saw him. Bad timing.... so she'll be back Thursday.

So on to the Nuclear test. Basically all they do is inject radioactive stuff into his shunt and take pictures at regular intervals to make sure the shunt is draining properly. While they had the needle in to inject the radioactive stuff they also took some cerebral spinal fluid for testing. (That ended up coming back with a high protein level which could cause some blockage but we haven't talked to the doctors about that yet.) The first pictures showed that the fluid was going into the ventricles fine but we couldn't see any movement down the catheter. After waiting a while they decided to do an adjustment to the shunt and see if that would help move things along. I got to see them adjust it and it is pretty amazing! They stick a plastic disc over the shunt and then insert a compass-looking thing into the disc. The compass pointed to 2.0 which is what his shunt was set to at the time. Then they took out the compass and put in a dial. The doctor turned the dial to 1.0 and then put the compass back in. This time the compass pointed to 1.0. Pretty crazy how simple the whole thing was... thank goodness for programmable shunts! So once the shunt was adjusted we started to see drainage down the catheter. They took a series of pictures over about an hour then waited an hour and took a final picture. They concluded that the shunt is now draining properly but it will ultimately be up to Dr. Foody as to what to do next. All in all, we were down in radiology for a little over 4 hours. Luckily the nurse brought a bottle of breastmilk down with us to hold him over. I also nursed him during our hour-long break between pictures. He was such a trooper and just chomped away on his pacifier the whole time they were messing with him!

Plastic surgery never came by today to change to the new type of dressing. Hopefully they do that soon so that we can get his back healed quickly and he can come home!! There was a meal at the Renucci house tonight. Coleman and I are always on time to those... and we know just where to stand so that when the line starts forming we're at the front! But tonight we were late and just got the leftovers. They didn't have any brats left (which I know Coleman was disappointed about) but we still appreciated the free hot meal. Tomorrow groups are coming in to serve breakfast and dinner! Hot dogs again for dinner but that's ok, we'll still be at the front of the line!

We're very thankful that our prayers were answered with just an adjustment of the shunt. God is powerful! He can move mountains and He can move blockages in shunts. We're praying that the shunt will continue to function as it should. We also know that God's hand on Lewis's back is better than any new bandage! God is good, he's blessed us with a handsome little boy, and we can't wait to bring him home! Thanks for all your continued prayers!

Monday, June 28, 2010

Just Another Day...

Hi, it's Lauren again. I figured it's probably my turn to write an update again. Coleman was in Muskegon working all day today so I'm the one that got all the updates anyway.

Dr. Foody came to visit Lewis before I got there this morning. He noticed swelling around Lewis's shunt and had his assistant come back later to do an adjustment. It will be a few days before we know if the adjustment did the trick. If not, he'll do a scan of the shunt to make sure there are no blockages. Please pray that the adjustment is all that is needed. We don't want Lewis to have to have another surgery!

The plastic surgeon's assistant also stopped by today to check on how Lewis's back is healing. It's not healing as well as they would like. They're concerned that the incision site is getting rubbed. If the "blister" gets opened up, that could be very bad. They're going to order a new kind of bandage to put on top and see if that helps. We're also supposed to be very very careful to not put pressure on his back and only put him on his side when breastfeeding. We already feel like we're being very careful.... it's kind of nerve-wracking.

So on to some happy news... we've decided to nurse Lewis at every feeding during the day. Basically I'll call down in the morning to let the nurse know I'm up. Then she'll call me every time Lewis is ready to eat during the day and I'll come down to nurse him until I'm ready to go to bed at night. We started that today and it has been going great! Another advantage of that is not having to pump during the day. That literally adds hours to my day... more time to spend with Lewis!

Well I think we should be getting a phone call soon... he's probably getting hungry!

Sunday, June 27, 2010

The Weekend

Hard to believe the weekend is already over.

Saturday we got ready for the day and went to visit Lewis. Lauren didn't stay too long - she had to head back to Muskegon for her friend Sarah's baby shower. Lewis didn't have to wait too much longer for more visitors though.

My parents, sister, and sister's boyfriend were stopping in Grand Rapids on their way home from Pentwater to see Lewis. So, about 5 min after Lauren left the NICU, Aunt Natalie and her boyfriend, Austin, arrived to visit Lewis. Natalie got to hold Lewis for a while. He likes being held! Shortly after they came, my parents got there. Natalie passed off Lewis to my mom and she and Austin headed out. My parents stayed and talked and held Lewis for about an hour and a half. I think they could have stayed all day with him! We grabbed some lunch in the cafeteria after visiting Lewis before they, too, headed home.

Lauren got back from Muskegon around 5. As soon as she got here we went back down so Lauren could nurse Lewis. After Lewis finished eating, we decided to go out and see a movie. It was nice to take a break from all the running around and hospitaling we've been doing lately. We saw Grown Ups - it was pretty funny! After our movie it was time to feed Lewis again - so we headed on back over to the NICU. When we got there the greeter at the NICU told us that she heard Lewis crying around 8. She had heard us a couple times say something about hearing Lewis crying as we were signing in. It's funny that other people recognize his cry! We hung out with Lewis until a little after midnight before calling it a night.

Today, after we got ready, we went over to hang out with Lewis. We like just being down there with him. Of course, we would like it a lot more if we could hang out with him in our house. I bet he'd like that a lot more, too. In between visits to the NICU we did a bit of grocery shopping. It's so nice that they have refrigerators available for use to keep our food. Tonight a local organization came in and cooked a meal for the guests here at the Renucci House. Ribs! It was really good. I hear they are having another meal tomorrow night!

After dinner we went over to see Lewis again. We spent a couple hours with him before heading back to the room. Hopefully we can get to bed somewhat early since I have to be up for work in the morning.

Here's some pictures from the weekend:














Lauren made fun of me for parting his hair...


He weaseled his arm out of his burrito

Friday, June 25, 2010

Plastics

Yesterday I started working back in Muskegon. I went down to visit Lewis first thing in the morning to check up on him and see what the doctors had to say during their early morning rounds. Nothing new to report. I couldn't stay long because I had a 45 min drive into the office - not quite my normal commute. I usually have a 7 min drive to work. I use quite a bit more gas, too.

So while I was at work Lauren spent some mom time with Lewis. When she got down to visit him, Lewis had his feeding tube out! I'm sure he's happy about that. That couldn't have been comfortable. The nurse told Lauren that the occupational therapist had just left after feeding Lewis. She fed Lewis non-thickened milk and he was fine. So no more thickener! Since Lewis had just been fed, Lauren stayed down and just held him for about 2 hours. He loved it! I got back and sat with Lauren for a couple minutes before we put Lewis back to bed.

We went down for his 8:00 feeding but the nurse had already fed him. Apparently he had gotten himself up and was screaming pretty loud. He was hungry! So we just sat with him for a while. The nurse said that since he wasn't on the thickener anymore that there wasn't any reason why Lauren couldn't try breastfeeding. So we came back about 10:30 to give that a try. Lewis caught on pretty fast! We weighed him before and after to try to measure the amount of milk he took. The scale said 20 mL so we bottle fed him a little more. Not bad for the first try! I fed him the rest. He was getting really fussy toward the end of his bottle and I soon found out why. I think the scale was a little off and we over fed Lewis a bit - he spit up all over me. Guess that solidifies my "dad" status.

This morning was similar to yesterday. I went down to visit Lewis before I went into work. The nurse said that no doctors had been by to see him yet. So nothing new again. I drove over to Muskegon and got to work. After a meeting I had today I noticed I had a voicemail. It was Dr. Mann (the plastic surgeon). We've been trying to get a hold of him for a few days now. Sounds like there was a communication breakdown somewhere along the way and he never received our page. He also said that he tried calling down to the NICU and left a message for us to call him - we didn't get it. In any case, he gave me some numbers to reach him but said he would call back later today.

After lunch I received another call from Dr. Mann, this time I was able to answer. He was down in the NICU with Lauren at Lewis's bed. He took off the gauze on Lewis's incision and showed Lauren (and talked me through) what was going on, what he's looking for, and what he wants to see before Lewis can go on his back. He said that there are areas around the incision that are like a blister. The skin underneath is healing fine but there is something like a blister on top of the skin. So we have to wait for that to go away before Lewis can go on his back and then come home. Dr. Mann estimated July 7 as the day Lewis would be released. Not exactly what we wanted to hear. But we would rather have Lewis spend extra time in the hospital and fully heal rather than take him home and have a problem and have to bring him back. Please pray that Lewis's back heals quickly so we can take him home!

So thats where we're at. Here's some pictures (and a video)!



Lewis likes to just lay in his bed and look around so the nurses like to give him something to look at. He loves it!


Posing in his sleep


video

So while Lauren was pregnant, Lewis had the hiccups 5 or 6 times a day. We only see him have the hiccups 2 or 3 times a day now that he's on the outside.

Wednesday, June 23, 2010

Making Progress


Today was a pretty good day! I had some work to take care of this morning but after that we got ready for the day, ate some lunch, and went to see Lewis. On our way in to see him we looked through the basket full of stocking hats. A group of people (old ladies i'm sure) knit hats for the NICU kids. They have a whole room full of them. We had picked up some before but they were all too small for Lewis's head. Most of the hats are made to fit premature babies. Well there was a big one in the pile today so we snagged it.


He looks pretty cute in a hat! So after we visited Lewis we decided it would be nice to get out and take a break from the hospital. We went to Target. We picked up a radio for Lewis's room so he can play his Beatles (thanks Becky and Jeff), Queen, and Led Zeppelin lullaby CDs. We also picked up some other odds/ends things.

We headed back to the hospital so Lauren could pump, and then decided to go out to dinner for Father's Day. We had originally planned on going out on Sunday but the ER trip kinda of nixed those plans. So we wanted to go to this tapas restaurant but drove by and it was closed - only open for breakfast and lunch. We drove around and went by Bistro Bella Vita and decided to go there. Very nice dinner, and they had a good beer selection too!


After dinner we went back down to see Lewis again. We walked in and were surprised to see that he had a shirt on (well maybe more of a baby hospital gown). It was kinda weird to see him with something other than just a diaper on. Oh, he still had his hat on too!


While we were sitting there the nurse told us that Dr. Mann had been down earlier in the afternoon to check on Lewis. She had some good news for us. While Dr. Mann was in no hurry to put Lewis on his back, he did think it was ok for Lewis to be held on his side! That should help with the feedings and he will also be able to start breast feeding soon. Speaking of feedings, Lewis has been drinking all his milk lately. The nurse said that if he continues taking his feedings, he can get rid of that feeding tube as early as tomorrow morning! The nurse also said that since he doesn't really need to be in his isolette, he can move to a big boy crib tonight!

So we're heading back down at 11 to feed him and put him in his new bed!


Monday, June 21, 2010

I'm Free (again)

I decided to give Coleman a break and write an update for a change. I planned to give him a break on Father's day but instead I made him sit in the emergency room for 5 hours and spend the night on a fold out couch/futon thing in a hospital room where someone walks in at least once an hour to "just check." Sorry Coleman!

So I spent 2 nights in the hospital before they finally released me. They never did find out what the infection was but apparently the antibiotics they gave me in the ER took care of it because I haven't had a fever since then. I don't think I make a very good patient... as soon as I felt better (which was as soon as they gave me the antibiotics) I wanted them to let me go home. They wanted to keep me for 24-48 hours more to observe me and I was not happy about that! They even did a CT scan (at 2:30 in the morning...) to double check some things and they still didn't find anything.

Last night was kind of exciting... we had to go sit in the hallway for a while because there was a tornado warning. It lasted from about 1:00 to 1:45. The nurse informed us that it was the first time it's happened in the 29 years she's worked there. Wow... I guess this isn't Central Illinois.

So today is Lewis's 2 week birthday. We were hoping that would mean he could lay on his back. His incision still looks a little "dusky" in spots so they want to monitor it for a little longer and maybe put him on his back for short periods within the next couple days. We're praying it heals up quickly.

Lewis has been taking his full feedings most times today. Once he's off his belly he'll probably guzzle it right down. Then he can get that yucky tube out of his nose and maybe we can try some breastfeeding.

They did another ultrasound yesterday morning. The ventricles don't look any larger than they did last week although they do look slightly larger than they did initially. They're just going to leave it for now. Personally, I think his soft spot feels a little firmer but apparently they still think it feels alright. One of the neonatologists said that sometimes they wait until right before the babies leave to make adjustments to the shunt. Kind of frustrating... but I guess they want to just wait and see what happens before they make any decisions. When we went to visit Lewis after the ultrasound he had some dried ultrasound goo left in his hair so the nurse got a comb so I could brush it out. His hair is pretty long already! Prety soon he'll need a haircut and I think I know just the person who can do it... ;)

We've seen him move his legs and feet around quite a bit since we've been here. We get excited every time we see them wiggle! We want to take a video to show off his kickers but he mostly moves them when he's screaming and I don't know that the rest of the sleeping babies (and nurses) in the room would appreciate us letting our baby scream while we video-tape his cute little legs! So you'll just have to come see them in person!

We took a nice walk to a park near here today. It was great to get some fresh air and sunshine for a change. We couldn't spend too long there since I had to get back and pump but I'm sure we'll do it again soon. Which reminds me... let me tell you one of the reasons Coleman is such a great dad already! He washes all my pump parts by hand in a tiny sink EVERY time I pump. Even in the middle of the night. And I pump 8-10 times a day so you can do the math... I really really appreciate that and Lewis appreciates the milk that goes through the clean parts ;)

Kevin and Sarah stopped by again this evening and brought us my favorite thing... food! We really love that there is food available here at the Renucci house but it definitely is not as nutritious or high-quality as we would eat at home. So thanks, guys, it was delicious!! Lewis was wide awake when we went to visit him so they got to hold him for the first time. I bet they can't wait to hold their own little one soon. We can't wait to hold her too!

Well I think that's all the updates for now. We're going to go down for the 11:00 feeding and hopefully get some good sleep tonight. Here's a picture to hold you over until you can see him from the front! :)


Father's Day

Happy Father's Day! Today happens to be the first time I get to celebrate this holiday. I made it by about 2 weeks! Here's how our day went -

We got up this morning and got ready for the day. We went down to visit Lewis. He was doing well. He really wants to be on his back though. Hopefully by Tuesday he'll get his (and our) wish. After we saw Lewis we ate some lunch and headed out to the mall so Lauren could find a swimsuit. We only live a couple miles from Lake Michigan so we plan on Lewis being a regular at the beach. Lauren wasn't feeling the greatest today so it ended up being a short (but successful) trip. By the time we got back Lauren was really under the weather - tired and feverish. She called one of the maternal fetal medicine doctors and told him what was going on. After I ran to the Walgreen's to get a thermometer and confirm her fever, he though it would be best if we went over to the emergency room to get checked out.

What a zoo! The waiting room wasn't busy but it sure was packed inside. Lauren was put on a stretcher in the hallway because there were no rooms available. We got to see all the action! Some dude got wheeled in handcuffed to his stretcher and yelling at the top of his lungs. He threaten to kill one of the security guards when he got out of the hospital. Nice guy. We got a room shortly after.

Anyway, back to Lauren. They did some tests and drew some labs and came to the conclusion that she has some kind of infection - not exactly sure what kind though. C-sections can cause a couple different infections. They gave her some IV antibiotics but wanted to monitor her overnight. So we'll be hanging out in a hospital room tonight instead of the Renucci House.

Lewis has an ultrasound on his head tonight to check the size of his ventricles again. Neurosurgery will review that in the morning. Plastic surgery will also be by to take a look at his back (the deciding factor on when he gets to roll over). Please pray that everything is ok with his head and back tomorrow. Also, pray that Lauren gets well and we can go back to the Renucci House tomorrow. Thanks!

Friday, June 18, 2010

Stretches

So not a lot happened yesterday. One of Lauren's friends from Service League came by to visit after lunch. Later that afternoon a physical therapist came by to see Lewis. Since he doesn't have much function in his legs, his legs don't get the exercise they need. They are stiff at all the joints. Also, since he's on his stomach, he needs help with his arms, too. So the physical therapist was doing some stretches and exercises with him. They are all things we're going to have to do with him once he gets out of the hospital. Nothing too extreme, just a couple times a day wherever it fits into our schedule.

Yesterday the doctors told us that they had ordered an ultrasound on Lewis's head. It seems his head has been growing slightly each day. They wanted to check the ventricles out to make sure the shunt was working properly. So early this morning he had the ultrasound and Dr. Foody took a look at it. He said everything looked good but he wanted another one done on Monday to make sure. Then Monday if something needs to be done, it will likely be a program change on his shunt to allow for more drainage. Sounded scary at first but I don't think it will be a big deal.

After we checked up on Lewis this morning, we ate some lunch and headed over to Muskegon to take care of some things at the house. Mainly we just wanted to clean up a bit, check our mail, and keg my homebrew (well that last one wasn't exactly on our list but I got it done anyway!). We had to hurry back to GR though because there was a church group serving dinner at the Renucci House tonight. And if it was anything like last night we needed to by there on time!

We went down to see Lewis after dinner tonight. We got there around 7:30 and he had just woken up to eat. They are training him so well here! We did his usual care routine and then fed him. I think it's easier to feed him when he is in one of our laps as opposed to in his bed. I think he does better with it that way, too. He downed his whole bottle tonight! Hopefully he continues that so he can lose that pesky feeding tube that's shoved up his nose.

We also did some of those stretches the physical therapist showed us tonight. He was a good sport about it. He didn't get too fussy with me when I was pulling out his legs and raising his arms above his head. He'll have to get used to it either way because there will be much more where that came from!

Here's some pictures from today:










Wednesday, June 16, 2010

How Far Along Are You?

We didn't really have much to report on yesterday. Pastor Chip stopped by a little after noon to see Lewis again. Kevin and Sarah also stopped by around 6 to check in on the little guy. Lewis didn't get a lot of sleep yesterday, don't really know why. Maybe it's the loud noises in there. There are constant bells and dings and whistles going off on other babies' cribs. Maybe it's the fact that he hasn't seen any other position than on his belly. He seems to get kind of restless sometimes.

Yesterday wasn't a good day for his feedings either. The nurses noticed a squeek when he was breathing in during his feedings and also a raspy breathing just after he ate. An occupational therapist came by to see if she could help out. She explained a couple things: breast milk is very thin and babies get their work out by eating. She described a baby eating as an adult trying to chug water after going on a 5 mile run. Sometimes it doesn't make it down the right pipe. Thats what was causing those sounds. So she added some thickener to his milk to make it more of a "nectar" consistency. The thicker it is the easier it is to swallow. That seemed to help, the squeaking and raspy sounds went away. They think that eating on his stomach is causing the problems so once he can be in another position he probably won't need the thickener anymore. We're hoping that happens soon because it's pretty frustrating and we don't want him to have to eat that nasty thickener for long.

Last night the nurse put the top down on his crib so he could get some better rest - drown out some of the noises. Sounds like it helped because he slept pretty well last night.

Today was a better day for Lewis. He was taking a good portion of his feedings. We fed him around 5 tonight and he took all but about 5 mL. He's getting close!

Lewis also had some more visitors today. Leigh and Emily stopped by to meet him. They both stayed for about an hour talking with us while I had Lewis in my lap. It was nice to talk with them and hear about their experiences in the NICU last year.

One of the nice things about the NICU is all the programs they offer for parents. We've been to a couple dinners, a CPR class, an infant massage class, and tonight Lauren is scrapbooking with other NICU moms. We ordered some pictures today so she'd have something to scrapbook with. In between visits to the NICU we ran out to Meijer to pick up the pictures. While in the checkout line, the guy in front of us noticed Lauren's (post) pregnant belly and said, "Congratulatons, how far along are you?" Lauren just smiled and said, "I had the baby last Tuesday." Oops! Hahaha. It's understandable I guess - we aren't toting a baby around with us yet. (This wasn't the first time this happened either) Hopefully this will happen again because Lauren has a great response for the next person to ask - "June 8." I can't wait to see their reaction to that one. Hahaha.

Monday, June 14, 2010

Neurosurgery: Check

We were hoping Monday would bring us some more updates on Lewis's status. Things seemed pretty slow over the weekend. So when we went down to see Lewis this morning the nurse had some good news for us. Plastic surgery had stopped by and said it was ok for us to hold him! Now we didn't exactly get to "hold" him but it was close enough. He still has to be on his belly while his back is healing, so they put him on a pillow and let us sit with him and the pillow in our laps. It was great! He loved it, too. He just laid there and looked around as we took turns holding him in our laps.

While we were holding him, Dr. Beaumont (neonatologist) came over to talk to us. He informed us that Dr. Foody came by earlier in the morning and said that as far as neurosurgery goes, Lewis is good to go! Great news! Dr. Beaumont explained the rest of the steps needed for Lewis to head home. He has to be cleared by plastic surgery and by neonatal. To pass plastic surgery, he'll have to be able to lay on his back for an extended period of time. To pass neonatal he has to consistently be taking all of his feedings. That includes gaining a bit of weight. Urology will also need to do some testing on his kidneys once he's able to lay on his back.

So Lewis had a pretty big day today! Hopefully now that his feedings have leveled out at 65 mL he will be able to get used to his feedings quickly and put one more check mark on his "go home" list.

Here's some pictures:








Grasping his feeding tube... I don't think he likes that thing...





Hahaha! We love the funny faces he makes!

Sleepy Baby

When we went down to see Lewis this morning, we noticed his back looked a little different. Early this morning a resident Dr. came by and removed Lewis's bandage on his back and replaced it with gauze. Everyone seemed to be pleased with how his back is healing. Good job, buddy!

Lewis's feedings also continue to increase. His last two feedings were at 55 mL and next he will be at 60 mL. He is still having some trouble chugging all that milk. Tonight for instance, we got off the elevator and heard him crying in the nursery. We got in the nursery after scrubbing up and started his care. We started the bottle before we changed his diaper. He drank maybe 25 mL and was fast asleep. I think I'd be pretty tired too if I was laying on my stomach drinking warm milk. So we took a break from feeding and changed his diaper. That didn't really seem to wake him up much (see pictures below). He drank a few more sips before he gave in and shut his eyes for the night. They had to use the feeding tube to get the rest in his belly. Hopefully once he gets used to the amount that needs to go in his stomach he will start drinking it all. I'm sure he will.

Today we also made a trip back to our house. We've been making a list since we got to the hospital last Tuesday. So we drove back to Muskegon, spent about an hour at the house, and then headed back to GR. It was kinda nice to take a break from the hospital - although we missed Lewis a lot while we were gone. I'm so glad we don't have to make that drive every day! One of the things on our list was some clothes for Lewis. So Lauren went upstairs to the nursery and walked into a surprise - someone had decorated the nursery! My mom told me who did the decorating - thank you G/G Schone and Aunt Ella! We can't wait to get Lewis home and take some pictures in there!

Until then - here's some pictures to hold us over:



Slurping it down for about a minute until....


.... he falls asleep.


And even a diaper change won't wake him!


Chomping away on his pacifier while asleep... haha!
video

Saturday, June 12, 2010

Day 5

Aside from a midnight pumping - we got a pretty good nights rest last night. And from the sounds of it, so did Lewis. Aside from a few short outbursts, he was pretty quiet all night.

Lauren's milk has started to come in pretty good, too. Its enough to keep him on the milk instead of formula now. When we went down to help feed him, Lewis was already awake and the nurse was changing his diaper. He had a pretty messy diaper (and continued to mess his dirty diaper as the nurse was changing him). We let her finish it up - hahaha. They had him taking 30 mL of milk this time. We fed him his bottle, but he didn't quite down the whole bottle. He kind of fell asleep before he was finished. The nurse checked with Dr. Kinney who said they may need to use a feeding tube to make sure he takes all of his food. We were pretty discouraged with this. All we want is for him to get better and then we get a little setback - he won't eat all his food.

So after we finished our visit with Lewis, Lauren and I went to grab some lunch. Lauren was so hungry she was shaking. I think it's the calorie output in the milk that made her so hungry - but she ate a lot at lunch, probably more than she ever did when she was pregnant! (And in case you were wondering - Lauren OKed this paragraph)

After lunch we headed out for the first time since Lewis was born. We made a trip to the mall so Lauren could get some better nursing clothes and also to the store to pick up some snacks and things.

We missed his 5:00 care but called in to see how he took his food. He downed it like a champ! We made it back to go to his 8:00 care time. We noticed right off the bat that he didn't have an IV in anymore. The nurse told us that they were trying to move his IV but could not get a new location to work. Dr. Kinney wrote it up to leave the IV out and to increase his feedings by 5 mL every 6 hrs. We did the usual: temp, diaper, and weigh. Before we fed Lewis the nurse went ahead and put a feeding tube in. Since he has been a little iffy with his feedings and they are going to be increased kind of quickly, she wanted to put it in. It ended up being ok because he didn't finish his 35 mL so they gravity fed him the rest. I'm still not quite sure which is better - no IV or no feeding tube. I guess we'll have to take what we can get now. We're going to go say goodnight to Lewis before we head to bed. Keep praying for the little guy - he's doing pretty well but still needs some help. Thanks - we'll talk tomorrow!

Friday, June 11, 2010

1 Down - 1 To Go

So this morning we were down bright and early to see Lewis. We stayed down long enough to be involved in his 8:00 care. We got to do the whole routine - temp, change diaper, and feed. Overnight they increased his milk intake to 10 mL so that was good to hear.

Today was a big day for Lauren - she was discharged from the hospital today! Now we're just waiting for one more person to be discharged so we can go home. They didn't kick us out of the room at a certain time though. That was nice because the Renucci House starts check-in after 3:00.

We didn't get over here exactly at 3:00 though, we were down hanging with the cool dude again for a while. He wasn't a very happy camper this visit. After he was done eating he started crying and didn't want to stop. It was frustrating for all of us since we just wanted to pick him up (and I'm sure he did too.) An occupational therapist happened to be in the nursery helping another baby and came over to show us some things. Since he's laying on his stomach he doesn't get all the necessary movements normal babies get. She showed us some exercises to do with him - holding his head and hips and gently rocking back and forth, holding his shoulders and hips and gently bouncing up and down, and again holding his shoulders and hips and rocking him side to side. Wow what a difference that made. Doing the head/hips one quieted him down instantly. He didn't mind the side to side one either. He didn't really care for the bouncing too much. The therapist explained that that was a new movement for him and he just wasn't use to it - in time he will get used to them. These movements are supposed to stimulate brain function and neuropaths. So we'll be doing these on a regular basis from now on.

We finally got all checked-in around 5:00 at Renucci. Pretty nice place: comfortable rooms, attached to the hospital, nice kitchen area with food available, ... We're very happy we were able to get a room here.

Shortly after we got settled in, our friends Kevin and Sarah stopped by to meet Lewis. We took them down to the NICU for a visit. He was sleeping most of the time we were down there but he peeked out to see his new friends a few times. We love showing him off (have I said that before?)! After visiting with Lewis we went up and had some dinner with Kevin and Sarah in the cafeteria.

After dinner we went back down to see Lewis for his 8:00 care. When we got down there the nurse said he woke up a little early because he was probably hungry. She had already done most of the stuff. We got to help weigh him again. He weighed 8 lbs! Must be because they increased his intake to 20 mL. We fed him again and then headed back up to the room. We're planning on heading back down one more time to feed him again tonight at 11. Then it will be time for some good rest.

Here's a couple pictures from today:











Thursday, June 10, 2010

Day 3

More milestones to report today!

While I was in visiting Lewis with my parents, Dr. Kinney (one of the neonatologists) stopped by for an exam. He decided it was time to start feeding Lewis with a bottle! Our nurse said that she would feed him around 2 this afternoon. So we planned our day around that.

Lauren had a visit from her doctors today, too. They said that they will be discharging her tomorrow! Once she's discharged we'll head over to the Renucci House where they have a room ready for us. It will be nice to still be so close to the hospital.

The new grandparents and aunts had their final visit with Lewis around noon before they headed back home to Illinois. I'm glad everyone was able to make it up here to meet him.

So back to Lewis - we went down around 1:45 so we could be there to help with his care and feed him. Lauren and I switched jobs today. She took Lewis's temperature and I got to change his diaper (although it wasn't dirty). We also got to put little socks on his feet! After all that he was ready for some food. Lauren took the bottle and started to feed him. The nurse helped prop him up a little bit since he has to eat on his stomach. Dr. Kinney wants him to eat 5-10 mL/serving. He was able to down 5 mL his first feeding! He'll get the hang of it soon and be slurping down all he can. All that food in his belly made him a tired little dude. After he ate he went right to sleep. We were both pretty tired too so we took his lead and went up to the room to take a nap ourselves.

We went and visited Lewis one more time tonight - during his 8 pm care time. As we were walking in the nurses were just finishing up changing his IV location. Next was fun task of removing the old IV from his head. He did not like that at all and certainly let us know! He calmed down pretty quickly afterward. Then it was time to take his temp, change his diaper, and weigh him. I took his temp, Lauren changed his poopy diaper, and I got to hold him up so we could weigh him. After we got all that done, it was my turn to feed Lewis. He downed another 5 or so mL of milk. He did good today. We stayed with him for a little bit after his care and then headed up to the room for the night.

Here's some pictures from today:















Wednesday, June 9, 2010

Day 2

So day 2 started pretty early for Lauren. The nurse came in a 0400 to get her out of bed and have her take a lap around the floor. Maybe it's because she works at night and doesn't realize what time it is, but I didn't think 4 was a very good time to go for a walk. Just me. After Lauren's walk we got a little bit more rest before deciding it was time to get up.

We called down first thing and talked to Lewis's nurse. She gave us the rundown of what happened over night. Lewis was breathing well enough that they decided to take out the breathing tube. Great news! By the time I called Lewis had already had some visitors - orthopedics and urology. They were just stopping in to see him and how he was doing. We'll probably be spending some more time with those doctors once Lewis is out of the hospital. Lewis also went in for a CT scan early this morning. Dr. Foody reviewed the results and said everything looked good! Dr. Mann also stopped by to take a look at his back. He was happy with how things were looking today!

Paster Joseph and his wife Miriam stopped by today to see us and Lewis. They talked with us for a bit in Lauren's room. Then we took them down to see Lewis. We like showing off our baby! Pastor Joseph prayed over him. We really appreciated them coming by!

We stopped in to see Lewis a few times throughout the day. Since he was still on pain meds from the surgeries yesterday he was pretty sleepy. He did open his eyes for us a few times though! Our last time down there tonight the nurse let us help with his care. The first thing we did was take his temperature. That was my job. I pulled his little arm out a bit and took his temperature from his armpit. Then it was time to change his diaper. Lauren got to do that. Since he was cathed and hadn't pooped, his diaper was clean, but they changed it anyway! Then it was time to weigh Lewis. The bed he lays in has a scale built in but you have to zero out the bed before he's weighted. That means someone has to pick him up to zero the bed. Lauren got to do that too! It must have been a great feeling - picking him up for the first time! Lauren said she'll let me do it tomorrow.

Oh, we also went to a NICU pizza party tonight! Our guest speaker was a nurse from infection control. Exciting stuff! It was free pizza though so I couldn't turn that down.

Anyway, we're both pretty exhausted tonight. I can only imagine how much more exhausted Lauren is. She's feeling better and better, though, as time goes on. We'll keep the updates coming!

Here's some pictures from today:

Lewis with his shunt (and blonde hair)


Lauren changing Lewis


Lauren holding Lewis


Family photo #1


Lewis's notes!


Tuesday, June 8, 2010

Lewis Miller

What a day!

Our day started at 0400 this morning when my alarm went off. I called the hospital to make sure everything was on schedule. I didn't have the direct line to the Labor & Delivery unit so I just looked up Spectrum on Google to get the phone number. Someone answered right away when I dialed the number - "Emergency Helicopter..." WHAT? Why Google posts that number for the hospital is beyond me. The guy was very pleasant about the whole thing saying that they get those calls all the time (I wonder why). Anyway, I finally got the right number - everything was on schedule. So we hopped in the car at 0430 and made our way to GR.

We got to hospital right on time, around 0530. They showed us over to the Birthcenter and got us in a room. They got Lauren all ready with IVs and the works and then had us sit there for the next hour and a half. Luckily one of the pastors from Kainay (Pastor Chip) dropped in around 0600 and hung out with us for a while. We were thankful for that because we would have just going crazy waiting in there by ourselves - the nervousness, the anticipation, ... We were happy to have some company. Our parents showed up a bit later, around 0715. They got to see Lauren before she was taken into the OR. While everyone was in the room Pastor Chip lead a prayer. Then Lauren was taken over to the OR to start the show.

I had to stay behind in the room while they gave her the anesthetics. Once they were ready for me, they brought me in. I sat up by Lauren's head along with the anesthesiologist. He was very nice. He gave us the play-by-play of what was going on the whole time. Once it was time to start delivering the anesthesiologist told me I could stand up to see the baby. That was probably one of the coolest things I have (and will ever) see. First the top of the head, then the whole head was out, then his torso, then his legs, then there he was. Baby Lewis was here! They took him to the table next to us to work on him - he started crying. Thats the best sound I've ever heard. Because of the opening in his back, we were not able to hold him at all after he was born. They did bring him over so mom and dad could give him a kiss though! Awesome! After that he was whisked away to the NICU.

Lauren was put back together and they took her over to the recovery room. When Lauren was ready, they took us up to the NICU to see Lewis. When we got up there he was lying quietly on his side just looking around. Lauren spent most of the time holding his little hand. They brought the new grandparents and aunts two at time to see Lewis. While we were there Dr. Mann (the plastic surgeon) stopped by to take a look at Lewis's back. We got to take a good look at his opening - pretty much what we expected. After we finished talking to Dr. Mann they took Lauren and me up to her room.

Shortly there after, around 1115, they called and had me meet Lewis and a nurse down in the pre-op holding area. Since Lauren was pretty much immobile, I went down by myself. I met with the anesthesiologist and with Dr. Foody (the pediatric neurosurgeon). They both explained how the surgery would go before they took him in. The plan was to perform the shunt surgery first and then the closure surgery immediatley after. Once they took him in we were playing the waiting game. They were pretty good about giving us updates on the surgery. Lauren's nurse came in and told us that the anesthesia went well and he was ready for surgery. A nurse called our room to let us know that the shunt surgery went well and they were getting ready to start the closure surgery. Then Dr. Foody called to let us know that his part of the closure surgery was finished and everything went great. A little while after Dr. Mann called to tell us that he had finished the closure and Lewis would be headed back to the NICU shortly. So thats where we are right now. We're waiting until he's ready for some visitors.

Please keep Lewis and Lauren in your prayers while they recover and that we can get home as soon as possible! Here are some pictures from today:



















Friday, June 4, 2010

6-8-10

Well, again, it's been a while since we posted last. A lot has happened in the last month and a half. I finished up my Navy annual training (AT) and got back home April 24. I set that up with a couple friends from school. It was nice to catch up with them, hadn't seen them in a long time. After AT, they went to the Bahamas and I went back to work - something's wrong with that picture. Oh well.

So on to baby news. Lauren started going to the Dr. every 2 weeks starting mid April and weekly starting mid May. Each visit was accompanied by an NST. During one of the NSTs the nurse yelled over from behind the screen, "Lauren, can you feel your contractions?" Lauren and I looked at each other - "No..." The nurse showed the results to the Dr. who decided Lauren should head next door to the hospital for further testing. So we got to spend that afternoon in the hospital, yay! The only thing that really came out of the whole hospital visit was nervousness. Everything was fine with the baby and these "contractions" were nothing more than a little stress from excess amniotic fluid. So we left a little shaken but glad that everything was still ok. Since then we haven't had any issues and they tell us that baby is looking good! He's right in the 50% for weight, he's moving around a lot, and, for some strange reason, he has the hiccups about 5 times a day. We had an ultrasound today and they showed us that he was practicing his breathing skills. He's going to need them come Tuesday. Oh yea, for those of you that haven't heard yet - Lauren is scheduled to have the C-section on Tuesday, June 8. Everyone has been asking us what his name is. Up until this past weekend we've had to tell everyone that we didn't have one yet. Well now we have a name...but you'll have to wait until Tuesday to find out what it is. Ha.

Everything is ready for the little man to join the household. His room is all finished, we have tons of clothes, diaper bags are packed, car seat base/infant carrier in place, ... We've had everything finished up for about a week now. It's been kind of strange. We were used to always having something to work on around the house. The last week we've just been relaxing. I guess we will enjoy the last bit of relaxing we can get this weekend. I think that will end very shortly. We're ready though. It's been a long 9 months: Lauren finding out she was pregnant while I was out sailing on a tug boat, the excitement of a new addition to the family, finding out the little man has SB, meeting all the doctors, connecting with new friends who have been in our shoes before and helped us out immensely, realizing everything will be just fine, getting ready for the big day... And now, that big day is only 4 short days away. We can't wait.

Finally, my best friend and his wife just welcomed baby Carson on May 28. Congratulations Jason and Tasha! We'll get the boys together ASAP!

PS - Here's some pictures

Lauren and I (5/30/10)


Baby Room Pics






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