Rob's Ramblings

2011-03-08T12:28:00.000-08:00

Pine and Snow

2010-02-07T14:16:00.000-08:00

This was after the first Big Snow of 2010. Then there was a Bigger Snow after that!

Snow of 2010

2010-02-07T10:08:00.000-08:00

2009-04-06T18:07:00.000-07:00

Aw Mom!

2009-04-06T18:06:00.001-07:00

2009-04-06T18:06:00.000-07:00

Hangin Out with Mom at Kenton and Cheryl's

Lately I've Been Thinkin' (Wedding Day)

2009-03-27T20:03:00.000-07:00

2009-03-27T19:32:00.001-07:00

Devon on the keyboard

2009-03-27T19:32:00.000-07:00

2009-03-27T19:31:00.000-07:00

Dolores

2009-03-27T19:30:00.001-07:00

With Erin

2009-03-27T19:30:00.000-07:00

2009-03-27T19:29:00.001-07:00

Food......Yeah!

2009-03-27T19:29:00.000-07:00

2009-03-27T19:28:00.000-07:00

2009-03-27T19:27:00.000-07:00

With Alec-Interesting Expression!

2009-03-27T19:26:00.000-07:00

With Uncle Tony

2009-03-27T19:25:00.001-07:00

With Cousin Cris

2009-03-27T19:25:00.000-07:00

With Cousin Jenny

2009-03-27T19:24:00.000-07:00

With Aunt Sue

2009-03-27T19:23:00.000-07:00

With cousin Nathan

Finds His Thumb Fairly Well!

2009-03-27T19:22:00.000-07:00

2009-03-27T19:20:00.000-07:00

First Checkup

2009-03-27T18:20:00.000-07:00

Well, Baby Nick went to Johns Hopkins for his first checkup since we got back to the shore. He had bloodwork done yesterday and they told us today that his bilirubin is down now to 4.0! He has also gained a half pound, putting him at 10.5 lbs. The doctor says he looks good, and that he is relieved that he's doing so well. The g-tube is becoming less necessary, since we're giving him his meds orally now, so the doctor says we should tell G.I. and maybe they'll talk about taking it out....That would be nice not to have to worry about. After his next appointment, they're talking about taking him off some of his meds. He's eating well-I gave him 5 oz. in one sitting tonight and he seems to have a great appetite.
Well, that's all for now.....thanks for reading!
Rob

Quicker Update

2009-03-26T21:11:00.000-07:00

Naomi and Con, along with Baby Nick, Alec and Mia are going to Johns Hopkins tomorrow for a follow up appointment. I'll try to post tomorrow night about that. I think his jaundice is going down some, especially in his eyes, but maybe we'll find out tomorrow....Thanks for remembering us!
Rob

Finally Home!

2009-03-20T22:14:00.000-07:00

Well, we finally made it back to Delmar! Got back around 9:00 pm. Naomi gave him his meds through the g-tube for the first time-it went well! Con, Carmen, & Dianna Bear along with Mitch and Neidy Sandlin brought Alec & Mia back to us and we had a good time together here at home.
Later my brother Tony's family came in from Ohio, and stopped to see us before going to Jon Bear's, where they will be staying while they're here. Sure is good to be back in familiar territory once again with all the family back together! We'll try to keep you updated here-see how it goes!
Thanks for checkin up with us and keep praying for us if you will. Thanks,
Rob

Best News Yet!

2009-03-19T21:30:00.000-07:00

Well, Naomi got a call on the phone today and I was wondering what they were talking about now, and we were surprised to hear that the Doctor said Baby Nick can GO HOME TOMORROW! His bilirubin went down again and the other liver function numbers are looking better, so they said he doesn't have to have the biopsy! PTL!!!!!!! He still has some jaundice, but we are thankful that it's going down. It was hard to part with Erin this evening, she's been his faithful friend so much of the time, but we'll keep in contact with her; much easier in this digital age. Don't forget to pray for her too and thank God for the wonderful care we've been given here.
Alec was discouraged last night and said "I just want to go home! Con said "Let's pray about it" Alec said "It doesn't work!" Con told him a story about God doing a special miracle and said "Lets pray for a special miracle!" They did! And we feel it's a direct answer to prayer that we got the news we did today! Thanks for supporting us in all the ways you have, even if with your time. We'll try to keep you posted as we go along. By the way, I'm feeling better tonight and Mia's doing better too. You can find more out about them by visiting philncon.blogspot.com.
Thanks,
Rob

Something Beautiful...the name of the song!

2009-03-19T17:47:00.000-07:00

Wed. March 18th

2009-03-18T20:15:00.000-07:00

Well, I'm still here in Baltimore; this bug hasn't totally decided to leave yet. I did drive down to Safeway this evening to get some Gatorade, chicken bouillon, etc. The bouillon tasted great after all the sugary drinks, jello, etc. I've been taking in. Pray that Naomi or the Baby don't get this sickness. Connie said Mia was sick today too. Alec, so far, hasn't been sick, so pray for them too.
Baby Nick is weighing in at 9 lbs. 14 oz. now. They've let him go off of the Pregestimil that he has been getting...he hated that stuff! Even the nurses say it smells terrible. He's being supplimented with Infamil, which he takes much better without urping up so much. Naomi and Doctor Francesca both said they thought he looked less yellow today.....we'll see tomorrow if his bilirubin has gone down more or not. Keep him in your prayers, as I know you have been and will....It's great to have praying friends and family!
Thanks,
Rob

A Little Info

2009-03-17T20:43:00.000-07:00

Not much to say today, except that Baby Nick's bilirubin level went down again! It's down to 8.5 now-they're still planning to do the biopsy on Friday, to have a certainty about it one way or the other.
I woke up in the middle of the night with chills and upset stomach, and have not felt well most of the day today. I was planning to go to the eastern shore tonight, but decided against it. Hopefully, i can get over the worst of it soon, and get back.
Well, thanks for reading!
Rob

Monday, March 16th

2009-03-16T20:54:00.000-07:00

Well, not a lot of news today.....Baby Nick's bilirubin had gone down to 9.5 the last time they checked it, so the GI team wants to see if it continues to go down before they do a biopsy. They were supposed to do it Wednesday, but they have a tentative schedule for Friday if the bilirubin doesn't come down. It would be great if he didn't have to go through it! I have to go back to Delmar tomorrow night, to go to PA and back to work at the market. We'll post some pics and vids.
Thanks,
Rob

2009-03-15T23:08:00.000-07:00

2009-03-15T19:39:00.000-07:00

Sunday, March 15th

2009-03-15T19:18:00.000-07:00

Well, we had another good time with the kids; they got to see the Baby Nick today, and then Jon Bear's came in and brought Taco Salad and more for supper....had to have seconds! Jo got to be with Naomi in the room and hold him. Jon, the children, and I went over to the old part of the hospital and saw the statue of Jesus and the dome, then we did some more exploring. After they left this evening, Naomi and I went to see Baby Nick. He seems very content-of course he had just been given his bottle, too! No, he really does have a good disposition. Had some good news today; they said his bilirubin went down to 9.5 - a good bit to go though; normally it should be at 0.5 - 1.0. The kids got to do crafts after seeing Baby Nick, and they decorated green hats with shamrocks and other Irish things. St. Pat's is just around the corner, so some things seem to be tuned to that around here. After their crafts, Francesca (one of Baby Nick's Docs), took the kids down to get some Ice Cream. They seemed to be a little more adjusted to the situation here than before. Well, I'll let you go for now...... Thanks for remembering him in prayer!
Thanks again,
Rob

2009-03-13T22:01:00.000-07:00

Spent the last two evenings with Jen and Judy Kurtz which has kept me from going totally insane from worry and depression! Thanks girls for the fun and laughs and I can't forget the good food too! Nick is definitely having the biopsy Wednesday morning 7:45 I think. God is good and I know He has our best interests at heart tho its not always easy to see the big picture. Pray that we would continue to trust everything to Him! And that through all this He would be glorified. Rob is coming back up tomorrow night which is always something to look forward to! And he's bringing the kids up with him. They LOVE the playroom here at The Children's House where were staying! It's a child's dream playroom! Well, Y'all have a good night! Naomi

2009-03-12T21:43:00.000-07:00

Docs are trying two more tests and if these come back negative they are slotted to do Nicks liver biopsy next Wednesday. His bili is over 10 now and hes not gaining much weight. Seems he goes up a few ounces then goes back down. Poor baby! Please pray that they will be able to find out what his issue is. If it is biliary atresia they need to operate before 2 months old. He turned 5 weeks old today. They want to be absolutely certain that its not an atresia as it can cause scaring of his liver etc... Thanks again for your prayers!

2009-03-11T21:20:00.000-07:00

Don't have the report back from Nicks MRI yet. He didn't need to be intubated or even sedated they were quite impressed.The GI docs are talking about doing a liver biopsy as his bilirubin is starting to rise again. And they are puzzled. They have ruled out so much and are trying to find the cause.On a happier note Nick smiled and chuckled for me and Erin today! His first. Not sleep induced smiles! He was awake and looking around kicking and we were talking to him and he smiled! And from the way this is being written you know that this is..... Naomi

Rob went back to Delmar....going to PA tomorrow...

2009-03-10T22:57:00.000-07:00

Well, I'm back in Delmar again....Not a lot of news. Baby Nick has to go in for an MRI tomorrow, etc. They hopefully will not have to intubate him; they think may be able to give him an oral sedative, if he behaves himself. He had also been tested for alpha-1 antitripsin deficiency syndrome that would be a more serious problem, but Praise the Lord that test came back negative! They said something about him coming home this week, but it may be next week, if the GI people clear him.....Lookin' forward to that time! Hopefully before he's a teenager!
Thanks!
Rob

2009-03-09T22:57:00.000-07:00

2009-03-09T22:56:00.001-07:00

Somebody Pick Me Up!

2009-03-09T22:56:00.000-07:00

The Sneeze!

2009-03-09T22:55:00.000-07:00

2009-03-09T22:54:00.001-07:00

2009-03-09T22:54:00.000-07:00

More News

2009-03-09T22:28:00.000-07:00

Well, the doctor said the official word on the hydascan (the scan of Baby Nick's liver to see if he had any blockages, etc.), came back negative. PTL! They're gonna check his bilirubin level tomorrow again; that's the main thing keeping him here. They keep talking more about sending him home, if everything goes well....more info on that later, I guess. Don't have a lot to report by way of news tonight, but I'll probably post some pics.
Thanks,
Rob

2009-03-09T00:04:00.000-07:00

Me & Alec!

2009-03-09T00:03:00.000-07:00

Me & Mia!

2009-03-09T00:01:00.000-07:00

Hold It Right There! Where's Your Press Pass?

2009-03-09T00:00:00.000-07:00

2009-03-08T23:59:00.000-07:00

Gotta Love That Hairdo!

Sunday, March 8th

2009-03-08T23:23:00.000-07:00

Had a nice day today.....took the kids over to the hospital, and while Naomi went to feed Baby Nick, we went and saw the statue of Jesus and went up in the dome. While we were walking down, I looked out the window and noticed a play area on one of the roofs below. So, we set out to find it, and a nurse brought a key and unlocked it for us. Had a nice time there, then we went inside and I played the piano in the auditorium, and Alec sang. He even garnered some applause from a man sitting up near the top!
Both Alec & Mia got to hold Baby Nick today; Mia was fairly quiet and unsure of what he would do, I think. Alec, on the other hand, was fairly chatty....anyone surprised? They both enjoyed seeing Baby Nick though.
James Kurtz's came up this evening, and we had supper together. Naomi took Christy over to the hospital, while James and I and the children spent time at the Children's House. Christy got to hold Baby Nick for the first time!
Well, on rounds this morning, the doctor said they're going to try to feed Nick as he gets hungry and not try to give him a measured amount, and see that works out. He also said they were going to start talking about discharging him! That is exciting for us.....it would be nice to go home together.....lots of nice people here, but we wouldn't want to make it our permanent residence!
Well, please keep on praying for us, and I'll post more later.
Thanks,
Rob

Saturday, March 7th

2009-03-07T20:10:00.000-08:00

Well, Rob here again....got back to Baltimore from spending 4 days back on the job. Went to PA on Wednesday for supplies, and Thurs. - Sat. I worked at the market again. Kind of an adjustment, especially not having Naomi and the kids there. On Thursday night, I went to James Brunk's for supper and the evening, then on Friday night, I went to James Kurtz's for supper and the evening, where Alec and Mia were staying. James Kurtz brought Alec and Mia to the market today and we left from there for Baltimore.
Got to hold Baby Nick this evening-he was resting very comfortably all snuggled up in a blanket that Erin bought for him-she's kinda like a member of the family! His jaundice had gone back up by 0.6 after it had gone down, but this morning, it had not gone up. They think maybe he just needs to eat more to push it through. Naomi got to hold him today without all his leads attatched- that was nice for her.
We'll keep you posted! Keep Up the Prayin'!
Thanks,
Rob

2009-03-05T16:24:00.000-08:00

Good times! Jen came to spend the day with me. We hung out with Nick, went to wally world, I got to see where she lives in Big Bad Baltimore, and had lots of laughs! Thanks for hangin' with me Jen!
Nick had a scan done the other day on his Biliary tree etc... He was the topic at Grand Rounds this morning here at Johns Hopkins Hosp. Grand Rounds being where the top dogs on the ladder meet to discuss certain cases and get ideas for treatment from other Docs. Anyway the top Doc on Biliary Atresia studied Nicks scan and said He's confident that Nicks biliary tree is not blocked etc... PTL!
Nick has once again been moved. Since he's negative for MRSA they wanted his room sanitized and so they moved him to new digs! Change of scenery and even more private then his last room.
Naomi

New binkie new everything!

2009-03-05T16:23:00.000-08:00

Clean clothes I'll think of some how to mess them up!

2009-03-05T16:22:00.000-08:00

Jen came to see me!

2009-03-05T16:20:00.000-08:00

Ha! I just ralphed all over mom! Watch out Jen!

2009-03-05T16:19:00.000-08:00

2009-03-04T20:24:00.000-08:00

So after my whiney post last night we had some good news today! Nicks bilirubin went down from 13 or 15 to 9, his weight went up, and no more contact precautions as his last mrsa swab is negative! Yippee! And I made it thru the day without Rob. Not that I liked it,but I made it. I spent like a total of 6 hours in with Nick. He enjoyed all the snuggle time! Mommy did too!
I know we ask for prayers each night,but there is no doubt in my mind that is what has got us this far,so please continue to lift us up each day and many thanks to each one! Blessings, Naomi

2009-03-03T20:53:00.000-08:00

Not much new on Nick. Tests and more tests... but where are the answers? How much can a baby take! I guess alot as he's doing so well otherwise.
Rob left for the shore a few hours ago. Back to work again. Kinda hard on me as i'm not the adventurous type of person, so please pray for us all as were scattered.
Thanks again for all the prayers on our behalf! We need them! Naomi

2009-03-02T22:55:00.001-08:00

Amphibious Friends we picked up somewhere!

2009-03-02T22:55:00.000-08:00

The Fudgery-very strange indeed!

2009-03-02T22:54:00.001-08:00

2009-03-02T22:54:00.000-08:00

2009-03-02T22:53:00.001-08:00

2009-03-02T22:53:00.000-08:00

2009-03-02T22:52:00.001-08:00

2009-03-02T22:52:00.000-08:00

2009-03-02T22:51:00.001-08:00

Who are You Lookin' At?!

2009-03-02T22:51:00.000-08:00

2009-03-02T22:50:00.000-08:00

2009-03-02T22:48:00.001-08:00

2009-03-02T22:48:00.000-08:00

James, Sandra, and Katie

2009-03-02T22:47:00.001-08:00

2009-03-02T22:47:00.000-08:00

National Aquarium

2009-03-02T22:46:00.000-08:00

Outside of the Aquarium

2009-03-02T22:45:00.000-08:00

Our day out!

Monday Mar. 2

2009-03-02T19:31:00.000-08:00

Well, no major changes today; they're still trying to figure out the bilirubin situation. Tomorrow morning, he's supposed to go down for a test that delivers dye down to the liver, where it bonds with bilirubin and goes through the liver to the biliary tree. It's more of a sure test, so hopefully it will help. The results of the green substance from his bandages are not in yet.....there's no a great amount of it, but better safe than sorry.
Jenn and Judy Kurtz came over this evening and spent some time with us. Nice to have them in the "Neighborhood"! I'll probably go back to the shore tomorrow night to go back to work. Pray for us on that front.....when I'm here, I feel like I should probably be working, but when I'm there, I feel like I should be with Naomi and the Baby Nick.
I played the piano at the auditorium today for awhile....nice to have that there! It's a nice way to unwind, and some security people came in and sat down and seemed to enjoy it. Maybe that's a ministry I can have while I'm here....
Well, better go for now.....Later! P.S. Keep Prayin'!
Thanks,
Rob

Sunday, Mar. 1st

2009-03-01T23:07:00.000-08:00

Not a lot of news for today....on the weekends sometimes things are kinda quiet at the hospital. The other night, we noticed some green substance on Baby Nicks bandages, on little areas of his incisions and the nurse noticed some where his central line goes in. One nurse thought that the bandage didn't look bad, but the nurse last night and the nurse today both didn't like it, so they brought it to the attention of the docs. Some of the surgeons checked it out on Saturday night, and 1 of them came in Sunday while we were there and couldn't see much color that would concern him much; he tried to squeeze the area to get it to produce some, but didn't see much green. The doctor that was there watching still thinks it didn't look good-the surgeon said it may be a resistant bacteria, so, once again, he is on Gentomycin. They are taking some tests to make sure it's ok. His bilirubin is still up a bit more-they're supposed to be sending blood to the lab tomorrow to see if he has any identifiable problems that would affect that. So, keep praying for the little guy. We'd love to be able to get him outa here and back home!
We had a great time with James Brunk's and the kids on our outing....I'll probably post pics, if they turned out. We didn't know if anyone was coming up Sunday or not, but James Kurtz was in meetings not too far away, so he stopped in and visited for awhile. He got to see Baby Nick without quite so much meds hooked up to him.
On a sideline, we went to the aquarium (as I had mentioned) yesterday, and we were walking through the area called the rainforest, where there are tropical birds, bats, etc. I'm not sure why, but Mia said she was looking for the chihuahuas. Interesting, seeing as we hadn't seen any dogs in the entire place. Never know what they're gonna say next!
Well, we'll keep you posted.
Thanks,
Rob

Playing the Steinway At Johns Hopkins

2009-03-01T20:48:00.000-08:00

Quick Update

2009-02-28T08:02:00.000-08:00

James and Sandra and the kids came last night and stayed with us, and today were taking a family outing to the Inner Harbor. Stopped in to see Baby Nick this morning- he was resting comfortably and eating well. He has some elevated jaundice; they've checked him for blockages, etc. and he seems fine that way.....so the intern said the good news is that his biliary system seems normal to ultrasound, but they don't know why he isn't getting rid of the bilirubin....they have him on some meds to break it up-not sure if it's making much difference yet or not. Please pray for him! Well, better go for now!
Thanks,
Rob

Lookin'

2009-02-26T23:11:00.000-08:00

Back to the Shore....for a bit!

2009-02-26T22:19:00.000-08:00

Well, Alec & Mia got to come up on Wednesday with Con and Teresa. We went to the North East Market just down the road for lunch-it's a strange and interesting place with fresh fish, chicken, vegetables, socks, lottery tickets, chinese food, soft pretzels-you get the picture! We had a good time there, then I stayed at the Children's House with the kids while Naomi took Teresa and Con to see Baby Nick....they both got to hold him. I got to feed him last night and after 10:00, I got in the van and headed for Delmar, arriving there around12:45. I worked at the market today and got to talk to some of my customers and co-workers there....change of scenery for sure! I thought last night when I drove by Food Lion and Wawa in Delmar, that the parking lots looked like you could eat off of them....they look spotless compared to a lot of the city here. Anyhow, this evening, I got back in the van and headed back to Baltimore. While I was gone, they took the pole that had Baby Nick's medicine dispensers on it away....one less thing! But also while I was gone, he had another seizure, and Naomi saw it happen, which was not pleasant. He had been on phenobarb through his central line and they had changed it to an oral dose; not sure if that or the timing made a difference or not, but he came out of it. They increased his phenobarb some and are keeping an eye on him; he seemed fine this evening when I fed him and he took down 105 mL! When we left, he was sleeping comfortably. Tomorrow, Nathan Hostetler is thinking of coming up, and and in the evening, James Brunk's are going to bring Alec & Mia up and stay the night here, and on Saturday we hope to take a family outing to the Maryland Science Center....compliments of the Children's House. These people really are good to us! Well, Late Again as usual, so have a good day!
Thanks,
Rob

2009-02-25T19:05:00.000-08:00

Rob had to go home tonight so he can work tomorrow. Waaaa! He said to let all know he will post tomorrow night.
Please pray for Robs mom as she has to have a heart cath done tomorrow! Thank you!
Thanks again for all the prayers on our and Baby Nicks behalf. Naomi

Off the TPN!

2009-02-24T22:25:00.001-08:00

Well, today they took him off the TPN (Total Parental Nutrition) that had been given to him since he got here. It was administered through his central line because he couldn't eat. Now that he is taking a bottle at the current level, he doesn't have to get TPN anymore....another good step!
He has had bilirubin levels go up a bit when they should be going down as his bowels are now moving. Normally, food would carry it along. We're not sure why yet; they're gonna take some x-rays of his bones tomorrow and an eye test to see if there are any abnormalities that would indicate if he has a syndrome that would cause him to have more bilirubin. The GI doc says she's not ready to say that he has that syndrome.....sometimes the TPN can make babies jaundiced and sometimes the problem works itself out. So they'll keep an eye on him.
Connie is planning to bring Alec & Mia up to see us tomorrow....we're looking forward to that! Also Teresa Witmer is planning to come along. I didn't go back to the eastern shore yet....not sure what I'll do. Sam is going to PA to pick up supplies tomorrow, as he has in my absence there. Erin has Baby Nick again tonight....we got to help give him his bath and do "cares" again.
Well, once again, it's late.....More Later!
Keep holdin' him up!
Thanks,
Rob

Alec's First Visit

2009-02-24T20:21:00.000-08:00

2009-02-23T22:23:00.000-08:00

Yawning!

2009-02-23T22:22:00.000-08:00

"Let Me Say This First...."

2009-02-23T22:21:00.000-08:00

Awwww!

2009-02-23T22:20:00.000-08:00

Stickin' His Tongue Out!

2009-02-23T22:19:00.000-08:00

Baby Nick Smiling....Kinda Druggey Lookin' Tho! Kinda Sleepy.....

2009-02-23T22:18:00.000-08:00

Statue of Jesus under the dome

2009-02-23T22:16:00.001-08:00

2009-02-23T22:16:00.000-08:00

Johns Hopkins Hospital

Feb. 23rd

2009-02-23T21:34:00.000-08:00

Well, today we got over to the hospital in time for rounds- that's what they call it when the attending doctor, the respiratory therapist, the interns, etc. go around to each of the patients and discuss their conditions and readjust their meds, etc. Baby Nick is supposed to go off of the vancomycin this evening, and they put some medicine in his nose to decolonize the MRSA there if there was any present at that time. They also increased the amount of milk he can have by a higher percentage than before; the attending doc said she thought they were not advancing his feeding amounts fast enough for his age, etc. That's good news to us. He had more food this evening and did pretty well with it. Tomorrow, I have to decide whether to go back to work and leave Naomi behind or not, so that's a tough call to make. She doesn't like to be without me here-it's not the greatest section of town....plus I wouldn't like it much either. So we'll see....
I've got some pics to post, so I'll talk to you later.
Thanks for remembering us!
Rob