Another Week Goes By

Last week was another busy week. James had visits from his occupational therapist, developmental therapist, and in-home nurse. The therapists say that James is making good progress. He can almost hold that head up. He definitely doesn't have nearly the floppy neck that he used to. James weighed in at 13 pounds 1 ounce on Wednesday.

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!!!

Fun-Filled Weekend

We had a great weekend with our visitor Kevin. I had to include the picture so that everyone would believe that he was here AND that he held James. Opa, if Kevin can do it, you can do it!

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!

Kevin & James

The Seafood Feast

Dave claims James was smiling before this shot. I'll believe it when I see it!

This is my favorite family shot because the whole family is in it!

Silly Daddy!

Playing with his monkey rattle.

A close-up.
Looking at Daddy Our best present ever!
I have a feeling these two will be inseparable.

Little Successes

James had a check-up with the Neonatal doctors yesterday. They check on preemies around 3, 6, and 9 months of their first year to make sure they are growing well. Anyway, James is doing great. Yesterday we got to leave his heart monitor behind! He hasn't had any alarms in over 6 weeks, so he is now wireless! He is up to 13 pounds and he is now getting 8 ounce bottles 4 times a day...oink! oink! The doctors said this is the right amount for his weight and age though.

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.

Bath Time

James had his first bath last night in the big boy tub! We have given him sponge baths up until this point because we have to be careful not to submerge his esophagus. I finally got this neat little incline seat for the tub so that he can take real baths. He loved it! He wasn't sure about putting his feet in the water at first, but he quickly became enamored. He even cried when it was time to get out. Dave thought I strategically placed the washcloth for the picture, but really I just didn't want to get peed on! I guess it served dual purposes.

Just Another Wednesday

It has been a crazy week. James has seen his cardiologist, occupational therapist, developmental therapist, and in-home nurse already. James is doing well. The cardiologist has released James and doesn't need to see him again unless his pediatrician recommends it down the road. The therapists keep giving us ideas to work with James to help him "catch-up" in his development...apparently 72 days in a NICU bed can set you back. Most of his slow progress is due to the fact that he can't eat and his therapists expect him to catch-up after corrective surgery. For now we just keep doing exercises with him and trying to convince him that his thumb and fingers can be really fun toys!

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 :)

Happy Thanksgiving!

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!

Mat Time

James loves playing on his mat! He kicks and grunts and just has a great time playing with the animals. He had a lot of fun showing off his mat skills to Grandma and Grandpa over the weekend. James is up to a hefty 11 pounds 8 ounces as of yesterday. He keeps on growing! And last night he slept from 8:30 until 6:30!! Mommy is working on adjusting his feedings to work around this new sleeping pattern of his. He has the bottomless Iverson stomach so he pretty much eats whenever I let him. Today he worked on sucking from a bottle with the occupational therapist. He can't take too much since it just drains out his neck, but he did a pretty good job for the first time. She's going to come every other week to work on his sucking/eating skills so that he'll be ready to go after surgery.

Can't forget about Olifur!!!

Happy Veteran's Day

And Happy 3 month Birthday to James! He just keeps growing and last night he only woke up once!!! I was so excited. We put him to bed at 8 and he woke up at 1:30 to eat. The he didn't wake up again until 7! I was so excited when I realized what happened when Dave's alarm went off at 6. Hopefully it's the beginning of a new sleeping pattern!

A few pics...

James lying on the adorable quilt that Oma made him.

Hanging out with Olifur...James still has another 4 pounds before he catches him!

Birthday Weekend

Dave, James, and my parents helped me have a happy birthday weekend. I was just a little sad because it was the first time in my life that I haven't celebrated with my brother (who shares the same birthday) and I had to miss Olivia's 7th birthday party. Keeping James healthy is worth it though! Dave bought me some shelves for the living room and my dad helped me put them up...it only took all Friday! I was excited because I finally got to unpack some more boxes from the move. Saturday, my parents watched James and Dave and I went out to eat at a local Mexican restaurant. I had my first margarita of 2009 (and my first drink since January)...it was fabulous!!! The weather was gorgeous on Saturday (70 degrees) so we all went for a walk. The fresh air wore James out and he slept a lot.

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!

Happy Halloween!

Trick Or Treating was Thursday evening in our town. Dave and I had over 250 kids!!! I ran out of candy (11 bags worth) after an hour and 10 minutes....whoa! Our little Tiger slept through most of it, but here are a few pictures of the little man. He now weighs 9 pounds 12 ounces. He has an appointment with his surgeon next week to check-in on his progress.

Homecoming Photos

James liked the carseat only when the car was in motion!

A cool sign and baloons from a couple of cool neighbors...thanks Tara & Karen!!!

James enjoying front porch sitting with Daddy.

Oliver wishing he could enjoy the front porch, but he settles for watching through the window.


James' first nap on the couch with his Daddy.

James with the prayer shawl a church in Festus, MO sent us. God's people are amazing!!


James wearing his outfit from Koselke! :) What a cute little dinosaur!!

Home at Last

Dave, James and I made it threw our first two nights at home. He is such a noisy baby; even when he is sleeping he makes noises (grunts and moans mostly). Right now James is sleeping in a bassinet in our room, but if we can't get used to his noisiness he is going to get demoted to his crib in his room real fast. He sleeps pretty good until it's time for his 4 am feeding (we're sticking to the 4, 8, 12 schedule from the hospital as much as he will allow it). Then he doesn't want to go back to sleep without being held endlessly (or so it seems). He pretty much sleeps right through his midnight feeding... a perk of not having to actually swallow your food I suppose.

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!

Carseat Photos

Snoozing away in his carseat.

Road Trip!

James gets to come home tomorrow! We are so excited!! He got all of his 2 month shots yesterday and will have his first pediatrician visit on Friday. He is sitting in his carseat right now taking his carseat test (a test all preemies have to take to make sure they don't have any breathing problems while in the carseat). I have some cute pictures of his first carseat sit (he passed out right away), but it's not letting me upload pictures right now for whatever reason. I will post them as soon it lets me.

Almost Forgot

We would never have made it through the 7 hour ordeal without the fabulous care package from our small group friends in West Lafayette! You all are the most fantastic people and we could not ask for better people to call our friends. The snacks, magazines, and games were amazing, even if I did want to hit Dave with the travel Guitar Hero after an hour (seriouly, no volume control?!). Thank you so, so much... we miss you all!!

James loves his hat, Miriam. He's totally wearing it on his first trip outside of these walls!

So much for the easy fix

James has finally made it back from the OR...it's only been 7 hours! The short story is his esophagus is still not connected, but he gets to come home hopefully next week. Corrective surgery should be able to take place in December or January.

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...

Round 5

James' next trip to the OR is scheduled for Wednesday, October 14th. The doctors have been pleased with the growth of his esophagus this week, seen through the daily x-rays. The plan is to go in Wednesday morning to fix him up (I'll believe it when I see it). However, if the x-ray they take that morning doesn't look as good as they want it to, then they will postpone the procedure.

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!

4th Time's Not a Charm

I am at a loss for words. Unfortunately, the doctors were not able to connect James' esophagus yesterday. I will try to explain... The half-centimeter distance turned out to be more like 2 centimeters once they got inside. This is the first time the doctors have actually gone inside with a scope and the previous xrays were a little misleading since they can only take two-dimensional pictures. Turns out that his upper and lower esophagus are not directly lined up which makes the distance farther. The doctors said that it would have put too much strain on his esophagus to fix it yesterday, which means too great of a risk that it would split before it could heal. So the doctors attached metal clips to each end of his esophagus and a string-like wire. These wires were then put through two incisions through his back and a clamp was placed on the end of them to hold them in place. Each day for the next week the doctors are going to pull on the wires and tighten the clamps to help lengthen his esophagus. The clips on each end of his esophagus will allow them to take xrays to see the progress made each day. (The doctors lined up his esophagus in surgery so that the xrays would be more accurate). They are hoping that this process will stretch the esophagus enough that it will be able to be fixed next week.

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 Afternoon

James had his 3rd trip to the OR today. He did a great job once again. They did not fix his espohagus because they could not get enough OR time (ugh!). Today they stretched his esophagus and now the gap between the upper and lower esophagus is less than half a centimeter! His next trip to the OR is already scheduled for Monday afternoon. The doctors expect to be able to fix his esophagus at this time (please, please, please). He is off the ventilator and doing well now. He's just a little fussy from the circumcision, but who wouldn't be?! Don't worry though, he's on enough pain killers to keep him comfortable.

Fun Weekend

James had a great weekend visiting with Grandma Sharon and Grandpa Dick. They of course found him adorable...who doesn't?!?

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.

Grandma Sharon and James talked about his cool uncle and aunts and cousin that live in St. Louis.

Back to the OR

James is scheduled for his next trip to the OR on Wednesday. The plan is to go in and dilate (stretch) his esophagus. If the distance between his upper and lower esophagus is small enough, then the surgeons will connect them together and James will be able to start the recovery process (this is what we are praying for). Please pray that the doctors are able to fix his esophagus and that he recovers quickly (so that he can come home sooner!).

Pictures, as promised

James is already an expert at blowing bubbles!

Relaxing after having his oxygen taken off on Wednesday. :)


Still enjoying no oxygen on Thursday! Nice work James!

Celebrating the the good news after his trip to the OR on Friday!! (wearing his hat from Aunt Abby)

Encouraging News

James did a great job today! They took him down to the OR bright and early this morning at 7:30 and he was back by 9:30. He is a strong little guy and came off the ventilator right away...yay! The gap in his esphagus is shrinking too...it was down to 1.5 cm! The doctors are going to stretch it a little each day for a week and then go back in early the week after next...at which time they should be able to fix him right up. He's in his birthday suit right now until he gets all warmed back up, but I will post a new picture soon. James is weighing in at a beefy 6 pounds 9 ounces today!

Update

James is still growing. He is now weighing in at 6 pounds 5 ounces (2.89 Kg). His surgeon is going to take him down to the OR on Friday to do an investigative procedure. They are going to measure the exact gap in his esophagus and stretch it some as well to lessen whatever gap there is. If the gap is less than 2 cm (it was 3.2 cm two-and-a-half weeks ago), then they will schedule James for surgery late next week or early the week after depending on the surgeon's availability. If the gap is more than 2 cm, then they will continue to stretch it and measure it each week until it is less than 2 cm. On Friday, they are also going to put in a Mickey button in place of his G-Tube. This will mean one less wire attached to him at all times and it makes his feedings easier.

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.

Happy Birthday James!

Yesterday we celebrated James' one-month birthday! We got him all bathed and then made him pose for pictures. I'm pretty sure James was thinking that his Mom is crazy the whole time, but I had fun! James is weighing an amazing 5 pounds 14 ounces now...nearly 2 pounds more than when he was born. Still no word on when the next steps will take place, but I will let you all know as soon as I do. My plan is to track down the surgeons on Monday to get some answers!

James...in the middle of bath time.

This is his my-mom-is-crazy face!

This is his enough-with-the-pictures-already face meant for his daddy!

Happy Labor Day!

We had a great Labor Day weekend! James was very excited to have visitors from Indiana. I mean look how happy he is!
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)

Neighbors

So Dave and I have the best neighbors...Rich & Karen. Despite the fact that Karen had surgery the same week I had James, she has given us food several times to help keep us fed. We are profusely thankful and as we were told when we moved in, "No one ever turns away food from Karen's kitchen." Everything she sends our way is amazing, even things I wouldn't think would be like cabbage casserole and zuchinni cakes. All of it is fantastic. And as if the food wasn't enough, we came home from the hospital last night and our lawn was mowed!! Truly great people. Thanks Rich & Karen!

Family Photo

The happy family...James even woke up for the picture!

For Aunt Julie (AJ) From JP

AJ wants new pictures and since AJ had to have a corrective eye procedure this week, we're going to give AJ want she wants. James is doing good. He's weighing in at a steady 5 pounds these days. He was off of his oxygen for a little while today, but it was a little too much for him still so he's back on it. He did get switched over to a "real" crib today. He hasn't needed the heater in his bed for a few days so they decided he could have a crib. James is also on "normal" feeds as of today also. This means he is getting 45 mL over half an hour every 3 hours (he had been on continuous feeds). Keep up the good work little man!!!

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?

A cute little outfit in his new bed :) [...back on the oxygen]