Tuesday, June 29, 2010

Just Some Info

James is doing well. He takes 8 - 10 ounces of formula by mouth each day plus around 8 ounces of solid food. He is slowly becoming independent of his tube. He needs to have his liquid volume up to 24 ounces per day before we can be rid of it forever.

James saw his hematologist today. For those that didn't know, James got a blood clot in his leg as a result of a central line that went bad in his leg from his surgery in April. He has been getting anti-coagulant shots twice a day since then (given by me). Today he has his leg ultra sounded and saw the doc. The doc says since he is symptom free we can discontinue the shots!

James still sees his therapists 4 times a week, but we are seeing progress all the time. He can now roll from back to stomach whenever he wants. He can't always go the other way, but he's getting there. He puts supported weight on his legs now and is so close to sitting up on his own. I'm sure he'll be mobile before I know it, but hopefully not before I baby-proof the house!

We are looking forward to seeing family over the next several weeks. Julie and Eric and their families are coming up for a long 4th holiday to visit. My parents are coming the week after that. Then we're heading to St Louis for Denise's bridal shower. Hopefully James will be independent of his tube by then so he can some too!

James' birthday is only 7 weeks away. It usually seems more like 3 years than 1, given all he's been through, but we're excited to celebrate. We're still not sure exactly what we're going to do. If he no longer has his tube, a road trip might be in order!

I am officially in my 24th week of pregnancy. I'm not so sure I'm ready for 2 crying babies, but I suppose it's too late now. Things are going smoothly so far with this pregnancy. I'm hot all the time and James' formula makes me nauseous, but the baby's healthy.

I suppose that's all you get for now...James is screaming for some undivided attention. I guess I'll let him have it while he can. :)

Wednesday, June 23, 2010

OR Update

James did a great job today! We got to the hospital around 9:00 and made it back to the pre-op area around 9:30. The OR James was scheduled to go into was running behind so he didn't end up going back until right around noon. (This actually worked out because we got to watch the USA win a World Cup game!) The surgeon went in with his scope and was very pleased with how James' esophagus looks. There was really no narrowing at all at the connection site, but he went ahead and dilated since he was in there. James' stomach is plenty big enough to handle full oral feeds now too, so we can start "aggressively" weaning him off his J-tube! The surgeon also put in a new J-tube to replace the temporary one James got over the weekend in the ER (after he pulled out his old one in his sleep, twice). So all went well with James in the OR and we got back to see him in recovery a little before 2. It was his shortest OR trip ever...and hopefully his last! After James showed he could take down fluids and keep them down, we got to go home. We were home by 5 and after a big meal (he hadn't eaten since the night before) and a long walk, James went to bed early around 6:15. He missed his naps today and had a surgery so he deserves his rest!

Future plans: James is now going to only be getting tube feeds over night, roughly 12 hours. We will do this for 7-10 days to help him build his appetite and feeding skills/routine. At this point if he is doing well, then we will try cutting him back to no tube feeds to see if he can handle it. He goes back for a check-up in 3 weeks and could possibly get the tube out then if he's no longer using it. There's a distinct possibility he will have it out by his birthday in 8 weeks! James will have to have a check-up with a surgeon every 4-6 weeks until the tube is out. After that he will have to follow-up with his surgeon once a year.

It seems like after 10+ months and 7 OR trips later, we can finally see a light at the end of the tunnel. I am hesitantly hopeful that James will decide he loves his bottle and start taking 3 full bottles a day soon (on top of his 4 ounces+ of solids he eats already). The ball is in his court now, so to speak. Hopefully he'll start playing!

Thursday, June 17, 2010

Surgical Follow-up

James saw his surgeon today for his last day doing clinical check-ups (the surgeon, not James). James' surgeon is moving to DC to be a Chief of Pediatric Surgery at the National Children's Hospital. (He will still be doing operations through the end of June). We feel quite blessed to have had such a great surgeon doing all of James' procedures. Anyway his surgeon is pleased with how the j-tube looks and would like to be more aggressive in getting him off of it. This is obviously okay with us. The plan is to do an outpatient procedure next week on Wednesday. They will scope his esophagus to make sure that the connection is still strong and healed up. If the connection has narrowed any, then he will also dilate it (stretch it) at this time. The doc will also take a look at the size of James' stomach and make sure it's ready for increased oral feeds. If everything looks good, then James can switch to just being on the tube at night time. The idea is that this will help build his appetite and hopefully get him free of the tube sooner. I am very hopeful that James will be tube free by this first birthday, which is just 8.5 weeks away!

Monday, June 14, 2010

Some Pictures from the last month

I finally got the pictures to upload after 3 days of trying unsuccessfully. I hope you like them!

Playing with his feet is a new favorite thing.
Taking a ride on Bennett's tractor...with some help!

Being loved on by his BFF (that's what Olivia says anyway!)

10 months old :)

Having fun with Daddy before church

Sunday, June 13, 2010

10 Months Old

James was officially 10 months old on Friday. I've been trying since then to post pictures, but apparently I can't for now. I will get them posted as soon as possible. James is doing well. He eats solids at 3 meals a day. He takes in about 3 ounces of solids each day. He's still not great at the liquids. He gets anywhere from 1 - 2 ounces a day of formula, mostly out of a cup. He's not a big fan of the bottle.

James now has 5 teeth (3 on bottom and 2 on top) and the 6th one is almost in (it's on the top). He grinds them together sometimes which sounds horrible, so we're working on breaking that before it becomes a habit. James rolls over onto his tummy now. He has woken up on his stomach 3 out of the last 4 nights. It's cute, but annoying because when he's on his tummy the feeding tube pinches off and then leaks. This morning he was absolutely soaked with formula when he awoke so he'd probably been on his belly for a couple of hours before it woke him up. He's still working on going from tummy to back, but when he gets some momentum going he can do it. James is still working on sitting by himself. He can hold it for about 3 seconds right now.

James goes to see the surgeon this week on Thursday. Now that James is allowed to have solids and liquids, I am hoping that we can cut back on his tube feeds to help build up his appetite and desire for formula and more solids. I would love to see that tube go away ASAP!!!! James sees a physical therapist every week now. She is helping build his core/trunk and arm strength so he can catch up to where he should be. He also sees an occupational therapist twice a week and a developmental therapist every other week, so James has therapy first thing in the morning 3-4 times each week.

James hasn't gained any weight for the past 2 months since he's now off the high-calorie diet. He is getting longer so he's starting to slim down just a bit, but he's still a chunk!

The last week James has developed quite the attitude. I'm hoping it's not permanent and I will get my easy going kid back soon. Now that he has the ability to spit up, he has discovered that spitting up is the one thing that makes mommy come running no matter what. He is using this to his full advantage. Whenever I don't give him what he wants fast enough, he works himself up and spits up. The pediatrician said that behavioral spitting up is actually fairly common among infant/toddler boys. Unfortunately since he's not old enough to discipline my only options are to ignore it or to carry him around everywhere (because that's what he wants). I just hope he grows out of it fast and returns to being a full-time happy kid!

Monday, June 7, 2010

20 Week Ultrasound

I had my 20 week ultrasound on Friday. It was such a relief when the baby's stomach was the first thing to pop into view on the screen. This means that the new little guy (yes, they think it's a boy) will definitely not have what James does. I am going to be seriously outnumbered, considering Oliver's a boy too, but as long as they're all healthy, I'm happy. And I know they'll take good care of me! This little one isn't nearly as rolly as James was in the womb, but he loves to kick. Currently he is feet down, so every kick goes right to my bladder. I have to go back this Friday for a follow-up ultrasound because he wouldn't turn at all and they couldn't get a good look at his face or spine. Everything they saw looks good though and he is right on track. Right now he weighs about 13 ounces. :)

James is doing well too. He continues to eat more solids every day. He goes through a jar of baby food in about 4 meals. When he first started, I had to throw half of a jar away because he wasn't going through them fast enough. He's drinking better too. He's not great at the bottle, but we're working on it. He drinks better out of cups right now and it's a good way to get him more volume. Yesterday he drank 2 ounces (which gets him an extra hour off the tube feedings). We'll keep working on it and continue to pray hard that he'll be able to get his tube out before his surgeon leaves the hospital at the end of June.

I hope everyone has a great week!

Tuesday, June 1, 2010

Swallow Study

James has his swallow study with the speech therapist at the hospital. He ate green beans and drank some formula laced with the dye while they took x-rays of his mouth and throat. The therapist never saw him aspirate anything (yay!), but at one point they got a picture of him coughing up a little bit from his airway. He spit up once during the study so they think the liquid in his airway was from that, but they weren't sure. Usually when they see fluid come out the windpipe, but not go in, it indicates a fistula (which we know he doesn't have from all his surgeries). The therapist suggested thickened liquids in a sippy cup. They are not concerned about him aspirating because his gag reflex and cough are much stronger. They just think it might be better to start slow with the thickened liquids. His occupational therapist is coming in the morning and she will give us some ideas on how to work with him more specifically. I think the bottle will be easier than the sippy cup, but we shall see. The speech therapist wants to see James in their clinic in a few weeks so they can watch him eat in a non-doctor's office setting.

In short, James is able to start getting fluids. I hope and pray that he picks it up as fast as he picked up the solids (about 2 weeks). His next appointment with his surgeon is June 17th. If he is eating fluids well by then, he has a chance of getting his j-tube out soon after that. Here's hoping...