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

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!

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!

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

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

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.

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!

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! :)