Monday, December 21, 2009
We also saw James' surgeon last week. We had to go to the hospital for this visit because the surgeon wanted radiology to do a contrast study so they could determine how much his stomach has grown since his last surgery in October. We got to the radiology department at 9:30, but didn't get in until 10:30. Then they realized that the wrong type of appointment had been made, so we had to reschedule for 1 in the afternoon. Next we went to see the surgeon. He was very pleased with James' size and is confident that we can do surgery mid-January. We went back down to see the radiologist, but didn't get in until 2:30. It was a long day in the hospital because James was not allowed to eat and he wasn't napping well with all the commotion and an empty belly. It really threw off his day-time schedule, but I think we're finally back on it.
James has this week off so to speak. Next week he will see his occupational therapist and his pediatrician. He has to get his 4-month shots at his check-up...oh boy. Then on the 6th he goes to see the surgeon for one last weight check before surgery and we will also schedule surgery at this time.
We all had a nice weekend at home this past weekend. Dave and I took turns finishing up our Christmas shopping for each other. I made cookies. Dave's fantasy football team had a big win and now he's going to be in the final game. The Colts are now the ONLY undefeated team in the NFL. I made out the envelopes for our Christmas cards (we're still waiting for the cards to get finished at the printers so they're going to be late...sorry). James fell asleep sitting in my lap...so cute! All and all it was pretty great!
We are looking forward to all the family that will be visiting over the next couple of weeks/weekends. Stay healthy because we want company!!!
Monday, December 14, 2009
Friday night I made stuffed shells and french bread. I wanted something that I could make earlier in the day so that I wouldn't have to spend time in the kitchen once Kevin was here. Turns out that it's one of his favorite dishes...I guess I am just that good.
Saturday morning we put Kevin to work taking photos of James. We put James in real pants for the first time. He was so cute! James tired out pretty quickly so we didn't get too many good shots with his eyes open wide, but there were still lots of cute pictures. Thanks Kevin!
For dinner Saturday Dave and Kevin decided they wanted a seafood feast, so Kevin and I hit up the local market to see what we could find. We ended up falling into a seafood sale and we still came home with $60 worth of seafood including crab legs, lobster meat, scallops, and shrimp (and all the fixings). We made bacon-wrapped scallops, crab legs, lobster nachos, and shrimp in butter and Ol' Bay. It was all fantastic, although I was not brave enough to try the lobster nachos. Dave and Kevin said they were delicious though and that we should open our own restaurant.
Sunday Kevin made it home safely despite the rain and ice. Then David spent the evening putting together my new sideboard for the dining room. I spent a good part of Saturday going to different furniture stores trying to find the right piece. Styles have changed since we bought our table 3+ years ago and it's hard to find one that coordinates and isn't $1000. I ended up going with one from Ikea for $250. The color goes amazingly well with our table and it looks good in the room. Yay!
James' Occupational Therapist will be here soon, so I better be going. Enjoy the photo montage!
Thursday, December 10, 2009
Tomorrow is James' 4 month birthday! One of Dave's college buddies is coming to visit us this weekend. Kevin has picked up a photography habit so he's going to bring his fancy camera and take lots of pictures for us. I'm hoping to get a family picture worthy of a Christmas card. I want to get them in the mail by the end of next week since Christmas is only 2 weeks away.
So Mic-Key button #3 broke Monday night so I had to once again change James' button. This time I called a surgical nurse at the hospital and she gave me a contact at Kimberly Clark, the manufacturer of the buttons. Apparently they had been having some trouble with buttons a few months back, but thought they had fixed all the problems. The lady with Kimberly Clark was super nice and helpful. She filed a complaint for me and then personally brought me over a year's supply of Mic-Key buttons (6). She also smoothed things over with the medical supplier that gave me a hard time last week. Hopefully the button he's wearing now will last until surgery and he won't need any of the buttons she brought, but we have them just in case.
James is working on taking afternoon naps in his pack 'n play this week. It was rough on Monday and then better on Tuesday. Then yesterday he had a doctor's appointment during nap time so we started over again today. It has been rough again today, but we're working on it. Our goal is to get the afternoon nap down pat by Christmas.
Now you are all caught up and I'm off to fold the laundry.
Sunday, December 6, 2009
Wednesday, December 2, 2009
Currently James gets his food through a Mic-Key button in his belly. Of course he had no problems with any of the buttons he had in the hospital, but now is a different story. Today I had to put his third button in (I'm an RN now too...not really). This is the third button in 2 weeks and the buttons are supposed to last for 3 months. The last 2 have had holes in the balloon that holds them in place. I have been lucky enough to discover the broken balloons before the problem caused a trip to the ER both times. But each time this happens, I have to call the medical supplier and order a new button because you always have to have a back-up. Now that I've ordered my 4th button in 2 weeks, they think I'm running some type of scam. Apparently these buttons are quite expensive. Seriously? Maybe there's a black market out there for these things??? So after discovering his button was loose today, realizing the balloon was busted again, and replacing the button (all while having a minor panic attack), I called to order a new back-up only to have them accuse me of lying and possibly trying to commit insurance fraud. Ugh! They're putting a new one in the mail, but I should expect a call from their nurse (because we don't see enough as it is) and probably my insurance company. Oh Great! I need a vacation!
I'm off to make Cheeseburger Macaroni...don't tell Dave I'm using ground turkey instead of hamburger! It's his own fault really. Last week he mentioned that we shouldn't have red meat so much...apparently it's bad for us :)
Sunday, November 29, 2009
Brian and Shawna came to visit us and little James last weekend. We had a fun weekend staying mostly indoors. Friday was a nice day so we went for a walk around Sewickley. They loved the candy store and the bakery...but who doesn't?!! Shawna watched James for us so that Dave and I could go get our swine flu shots on Saturday...Western PA finally made them available to those of us with little babies! Shawna and I did a little Christmas shopping on Saturday afternoon and went to see "New Moon." I was so excited
to see it. It was fabulous! I want to go see it again because there's no way I'm waiting for it to come to video! (Yes, I know I'm a huge dork).
Dave and I celebrated our first Thanksgiving with James in Pennsylvania. We have so much to be thankful for and having James home with us is at the top of the list! I made my first Thanksgiving meal all by myself and I think it turned out great...Dave did not disagree! I made a turkey breast, green bean casserole, oven potatoes, homemade bread, stuffing, and pumpkin pie. All by myself in approximately 4 hours! I know I'm good :) About 10 minutes after we finished cleaning up and putting away left overs, our neighbors stopped by to invite us to supper at their house...a meal with all the trimmings. We accepted because we haven't been able to visit with them much lately...and we can't turn down fresh food from Karen's kitchen! It was great to spend time with our neighbors around a table filled with wonderful food...we are so blessed!
James is doing great. He is up to a beefy 12 and a half pounds now. AND he is sleeping through the night now too. He has slept for about 11 hours the last 4 nights in a row. Go James!!! We are off to see the cardiologist tomorrow...just a check-up since they can't visit him in the NICU whenever they want. His occupational therapist and developmental therapist will also be by this week to check on his progress. His therapists come to the house, so we don't have to go out...so nice! We don't see his surgeon again for another couple weeks, but we're still planning on corrective surgery in January.
Working in the kitchen...the pumpkin pie is in the oven...it smells so good!
Watching Turkey Day football...boys will be boys!
Thursday, November 19, 2009
Wednesday, November 11, 2009
Tuesday, November 10, 2009
Monday, November 9, 2009
James is doing well. On Friday, he weighed in at 10 pounds 12 ounces. We saw the surgeon last week and he is happy with James' progress. The plan is to see the surgeon again in December and then schedule corrective surgery for January. We are working on trying to get James to sleep in longer spurts at night time. Right now the longest he goes is 5 hours (from 8 to 1) and then he wakes up every 3 or less after that. I have the Baby Wise book requested from the library for suggestions, but I have to wait my turn. Almost lunch time for James...the chunk is up to 5 ounces every 4 hours!
Saturday, October 31, 2009
Monday, October 26, 2009
A cool sign and baloons from a couple of cool neighbors...thanks Tara & Karen!!!
Saturday, October 24, 2009
Anyway, we are loving having him here at home despite the lack of sleep! We can't wait until he's big and strong enough to visit cousins in Indiana and Missouri! In the mean time, all the healthy are welcome in Pittsburgh!
Wednesday, October 21, 2009
Wednesday, October 14, 2009
James loves his hat, Miriam. He's totally wearing it on his first trip outside of these walls!
The Long Version (not for the weak stomach people)... It turns out that even though there were no holes between his trachea and esophagus, his esophagus and trachea were stuck together inside his neck. (This explains why his upper esophagus has not been responding to all of the stretching procedures the doctors have done in the past.) The doctors had to go in through his neck to split the trachea and esophagus apart. Once this was done, his upper esophagus would still not stretch enough to connect it to the lower esophagus. Thus Plan E (or whatever we're up to)... James' upper esophagus is now coming out of a hole in the side of his neck. It is much like a tracheotomy, but with the esophagus instead. This means that he no longer needs the suction in his mouth because his saliva (and anything he takes orally) will just drain out the hole in his neck. He will still get food through his G tube. In a few months the doctors will once again attempt to connect his esophagus. At that time, they will probably have to use tissue from his stomach to close the gap.
For now, James is still on the ventilator. They want to let him wake up naturally and will take it out in the morning unless he is wide awake before then. He will get to start his feeds again tomorrow. He should be able to come home once he returns to full feeds and is gaining weight. When he comes home, we will give him feedings through his G tube and take care of the esophagostomy site. Other than that, he won't have any restrictions to his daily activity. He will have appointments here every other week or so to monitor his progress.
Stay tuned for updates...
Friday, October 9, 2009
James is doing alright. He's back on full feeds and is gaining weight. The nurses alternate morphine and tylenol for the little guy every 3 hours to keep the pain away (I'm guessing it's not pleasant to have giant clamps attached to wires coming out of your back). So he's not in pain, but he is also not quite comfortable. Each day I just pray that he sleeps through it all!
Tuesday, October 6, 2009
James is hanging in there. He can't be on his back or right side because of the clamps holding the wires in place. He also can't be on his stomach for now because of the IV and IV brace in his arm. He gets pain killers every 3 hours, but he still isn't allowed to eat and we can't hold him yet. He is off the ventilator.
Dave and I are hanging in there with James. We're looking at another 3 weeks here at least. It feels like every time we start to see a light at the end of the tunnel someone turns it off or moves it farther away. We are trying to focus on the positive things. Some days are harder than others, but we will make it.
Thank you for all of the continued prayers. I will let you know more when we do.
Wednesday, September 30, 2009
James is contemplating what to say to Grandma & Grandpa when he meets them.
Grandpa Dick and James talked about going fishing together.
James is telling his nurse to go away (with his eyes) so that he can have more time with his parents and grandparents.
Saturday, September 26, 2009
Saturday, September 19, 2009
Relaxing after having his oxygen taken off on Wednesday. :)
Still enjoying no oxygen on Thursday! Nice work James!
Friday, September 18, 2009
Wednesday, September 16, 2009
Please pray that all goes well on Friday. They will have to intibate James for the procedure, so please pray that he comes off the ventilator quickly and successfully. Also pray that the gap is small and the corrective surgery can be done soon. (I still pray that God will just fix him without surgery, but I know that his surgeon is great if he needs it) I also found out that recovery time after the corrective surgery will probably be a couple of weeks, so please pray for Dave and my continued patience and sanity :)
Off topic, please keep the current and former members of FBC of Galveston in your thoughts and prayers. They are going through a lot right now and could use all the prayers you could send their way!
Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.
Saturday, September 12, 2009
James...in the middle of bath time.
Tuesday, September 8, 2009
Amos, Ashley, and Miriam made the road trip and we were all very excited to see them. We spent some time visiting James (obviously!) and also took them to see a few of the Pittsburgh sites. Amos and Ashley enjoyed their first Pittsburgher at Primanti's and we took the Duquesne Incline up to Mount Washington to admire the view. Ashley and I also visited the outlet mall. It was nice to get out and I was able to get some awesome Labor Day deals on clothes for Dave and James!
(sorry about the layout of the post...I'm still not very good at making my posts pretty)
Thursday, September 3, 2009
Monday, August 31, 2009
Saturday, August 29, 2009
Daddy enjoyed holding James while he was off his oxygen for a few hours.
A close up of his face with only one tube! Who do you think he looks like?