The roller coaster called Landon

Well, today has been a small roller coaster. The doctors heard Landon's breathing today and became more concerned than they had been. So, they called the on-call ENT to come and check his vocal chords. It turns out that his left vocal chord is not functioning. This is a side effect from the surgery. When his aorta was clamped, the vocal chord nerve also got clamped. During the surgery, the nerve was stretched and has not returned to the functionality that it should have. This is a common side effect of the surgery and the vocal chord will most likely return to normal. It can take as little as a month or as long as six months. On Monday, Landon will undergo a test to check to see if the vocal chord is affecting his ability to eat. During eating, the vocal chords close off the esophagus, ensuring that food does not get into the lungs. This test will see if the chord is closing off the esophagus or not. Since Landon has not shown symptoms of this over the past week and a half, the doctors are thinking that the chord is not affecting his eating, but they have to rule everything out. So, we will not be able to come home on Monday like we were hoping.

Landon has had a good day of eating though. Since we have started his new feeding plan, his oral intake has dropped, but he is gaining weight. Weight gain is our ultimate goal and that is what will get us home. He is slowly working his way back up to taking in more orally. Also, his spitting up is decreasing.

We are still trying to stay positive about everything. We are thankful that we have had some great nurses to work with who really care about Landon and give him great care. Some of them even just stop in to see him if they are not assigned to him! He is a charmer already!

Woohoo!! Good news today!

We got good news today! Landon gained weight! We are ecstatic about it! And...on top of that, he is eating better and spitting up less! We got the approval from the doctors to take him home with the NG tube. We know we will be here through the weekend, but we may possibly go home on Monday! Please send some prayers out for that!

We had a good day today. Matt and Hayley Jordan came by and we were able to go to lunch with them while Grandma and Grandpa Bausman stayed in the room with Landon. Grandpa managed to get Landon to eat 35 mLs, which is the most he has taken from the bottle in 2 days! Kim Soden also stopped for a short visit this afternoon and Kara Burkhalter came by after work tonight. Becky Cohen is on her way here as I type this and she and I will be going for dinner. Nick will stay in the room and hold down the fort.

Here are a couple of pictures of our little guy. And per Payton Jordan's request, Nick is in one of them!

Personality development

The doctors made some changes to Landon's eating schedule today. They decided that if he isn't waking up for his feedings, especially at night, then we won't spend time waking him to get him to eat and he will be fed through his tube. We also aren't putting a lot of effort into waking him during the day either. The thought behind this is that he is wasting too much energy and calories trying to wake up, therefor he isn't getting the chance to gain weight. He has not gotten sick as much today as past days, which is great! But, he also hasn't taken as much in orally as he has in past days. Speech therapy came today and talked with me at length about the science behind what we're doing. She said studies have been done and children who are put on this path go home 3-5 days sooner than children who aren't. So....let's hope this works for Landon.

Landon no longer has any dressing on his incision! His final stitch was taken out today and the incision looks great. It is healing very well. We continue to be told that he is healing from surgery very well and that his VSD's (holes in his heart) should become smaller as he ages.

Any hospital employee who comes to see Landon always comment on his behaviors. He is a very funny little guy. He growls at us when he is unhappy and gives us little smiles when he is sleeping. He also looks around a lot when he is awake to see what is going on around him. One of the speech therapists thought he is 2 months old, not 2 weeks old because he acts so mature! He holds his head up really well to be able to look around. It's so cool to see his personality develop. When you are expecting a baby, you don't always think about what will happen after they are born. You never think that this is what will happen when your baby is born. You don't expect to be in a hospital for weeks because he had to have heart surgery. But, you roll with the punches and do what needs to be done for your baby. But, you also don't think about how quickly they will change and grow and just how amazing they are. Every day I can't believe how incredible Landon is and how strong he has been through this whole thing. I have a lot of confidence in him that he will go home stronger than ever!

No visitors yet today, but Aunt Megan is stopping later with food for Nick and to watch Project Runway with me. 

Baby steps

Landon had a better eating day today than yesterday, but not quite as good as two days ago. We will take this progress though. There was more talk today about moving us to St. Mary's, but St. Mary's refused us because they haven't seen him at all. So, we are staying here for the duration. We still don't know how much longer we will be here, that is completely up to Landon. When he gets to eating 70-80% of his daily goal, the feeding tube will come out so we can see how he does on his own. So far today, he is at about 40% of his goal and we have one more feeding left for the night. We are hoping for some weight gain tomorrow also. He did wake up for almost all of his feedings during the day today. He woke up early for a couple of them too!

We had another pretty quiet day. Grandpa Bausman stopped by after he bought his new camera and Aunt Megan came tonight with some rattly toys to hopefully wake him a little easier and stimulate him. He grips onto things really well, so hopefully he will hold on to those also. Landon also did a special trick for his Aunt Megan! When she was changing his diaper, he decided to show her his fountain! It was pretty impressive and hilarious!!

Nick headed to Monroe tonight to go to an officer's meeting at the fire department. I think it will be good for him to get home for a while, have some reality, and get into the fire station.

Passing the test

Landon didn't have much progress today. We were told not to get discouraged because he can have down days. We were also told today that if he gets to 70% of his daily goal, the feeding tube can be removed. Yesterday he took in about 63%, which was about twice as much as he had been. I hoping to not jinx him, but he has managed to keep most of his food down today.

Landon also had his car seat test today. I know it sounds weird. He had to spend an hour in his car seat and tolerate it. He slept the entire time he was in it, thus passing his test!

Grandma and Grandpa Bausman came today and stayed at the hospital while Nick and I went and did some shopping and had lunch. It was great to be out together and I had my first beer since March! It was great to actually taste one instead of just smelling Nick's! Aunt Megan and Taylor also came for a visit.

Forward Progress and Happy New Year!

Landon has made progress today!!! At rounds this morning we decided to go back to feeding every three hours with a specific volume goal. His goal per three hours is 56 mLs, fortified to 27 calories. He met his goal in one of his feedings! Although he had some spit ups during the feeding, he still drank all of it from the bottle. During his last feeding he took 50 mLs, which is also great! I really feel like his body is starting to figure out this eating thing! Hopefully when he is weighed in the morning, he has gained weight. That is a big factor that the doctors look at. And, of course, they will look at how much he actually took in himself. I feel like all the prayers are working, so please continue to send them!

We had a quiet day today. Kurt, Becky, and Sam Cohen stopped by today to say hello.

Happy New Year!! Landon is hoping for a great 2013!

Celebrating Christmas

Today, Grandma and Grandpa Bausman and Aunt Megan and Taylor came to celebrate Christmas. We had  some impatient adults in the family! Megan made pasty for lunch and Mom brought salad and cookies. Landon slept through most of the party and woke up when everyone left! Carrie Bartels and Tom and Sue Burkhalter also stopped today to see him for the first time.

As far as eating, there isn't much change today. He took in 97 mLs but threw up twice. He pulled out his NG tube this morning and I told him that if he didn't want it in, then he needed to start eating better. We didn't get very far with that! Nick and I just wish that this would get figured out! I think I am frustrated because people will tell me that their child spit up a lot for the first six months. I feel like the only reason this is an issue for Landon is because we are already in the hospital and he has people keeping an eye on him all the time. We understand that he needs to eat in order to sustain himself, but we aren't sure what the solution is. It seems as though what the doctors think will work, isn't working.

On a totally unrelated note, I put on real clothes today! When I say real, I mean something other than sweatpants or leggings! I actually got a pair of jeans on and a sweater. It felt great! I am hoping that if I feel better and more positive then things with Landon will turn around. I may be grasping at straws here though...

Tom and Sue brought this bib for Landon, as well as other gifts, and Dad found it!

Such an amazing present!

And.....right before he threw up the last time!