Lately I've Been Thinkin' (Wedding Day)

Devon on the keyboard

Dolores

With Erin

Food......Yeah!

With Alec-Interesting Expression!

With Uncle Tony

With Cousin Cris

With Cousin Jenny

With Aunt Sue

With cousin Nathan

Finds His Thumb Fairly Well!

First Checkup

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

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!

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!

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!

Wed. March 18th

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

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

More Video....

Sleepin' Away!

Monday, March 16th

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

Sunday, March 15th

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

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

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!

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...

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

Somebody Pick Me Up!

The Sneeze!