Post-Op, Day 3 and moving

Landon is still doing very well. Today he had his last chest tube removed and he was taken off his oxygen. His nurse also removed his kidney sensor. (His brain sensor was removed yesterday.) The only thing left to be removed, other than his leads for vital signs, is an IV. That should be removed tomorrow.

He had a swallow study done today to check if he will aspirate while eating because of his vocal chord. They found that he did aspirate on his third swallow with a fast flow nipple. So, they switched to a slow flow nipple and he did fine with that. Unfortunately, because they use barium for that, his stomach has been bothering him most of the day since then. His stomach isn't really moving anything out of it, so he hasn't been very hungry. He gets quite uncomfortable and whines a lot because of it. Hopefully that will move through him soon so he can eat orally and be more comfortable.

He has been receiving respiratory therapy today to help get some of the "gunk" out of his system. He got somewhat of a bath today and cried a lot during that and that is almost the best therapy he can get. His cry is a lot quieter than pre-op, but that was to be expected. Hopefully that will return soon.

We got half a smile out of him today when I finished changing his diaper. But it was like he realized he was mad at us and stopped. He has spent most of the day watching cartoons on the laptop. They have kept him calm and helped him forget that he is uncomfortable. We had him out of bed a lot today to help gets things moving through his body. He loved being held and got upset when we put him back in bed.

On a low note, we found out tonight that we have to move to a different room. They have been doing a lot of shifting of kids tonight and we are one of them to be shifted. It's a pain in the rear! This happened to us the last time we were here. We were told we would be moved to a shared room and that we would have the larger side of the room. Then...we found out that we are really being put on the smaller side. The boy we are sharing with is the same boy we shared with before we were discharged in January. Now, this is horrible. This little boy is now 4 months old and rarely has his family with him. We are not allowed to give him attention, for obvious reasons, but I find it very difficult to be in a room with him and not pay attention to him. Hopefully since it's the weekend some of his family will come in. It'll be a little easier for me because I will be gone all day, and most of the night, tomorrow for a track meet.

We are very proud of Landon and how hard he is working. He is an amazing boy! If you haven't met him yet, you will see someday what I am talking about. He has really changed our lives. I never knew what people meant before when they said, "Kids change everything." I know now. All of the stupid things that bothered me before, just don't matter. I don't get caught up in minor things that really shouldn't affect me much. I just ask one thing of all of you who have children or grandchildren...hold them tight and make sure they know how much you love them. Remember how lucky you are to have them in your life. They are an amazing blessing from God.

Watching cartoons on the laptop

Snoozing with Dad

Post-Op Day 2

Landon has had a great today! He had a lot of things removed, so he seems a bit more comfortable. He also has been awake and looking at us a lot today. This morning he had two of his chest tubes removed, the pacemaker wires were removed, his catheter was removed and one of his IV lines was removed. So he is left with one chest tube, one IV line, and the oxygen in his nose. His oxygen was changed to a lower rate and we were hoping to get rid of that today also, but the docs didn't okay it. I'm sure tomorrow it will be removed. His blood pressures had been pretty high today, so they started him on captopril to help with that, and his pressures have dropped nicely.

We are told by the doctors that he is ahead of schedule for his recovery. He began eating today, through his G-tube. He has tolerated that very well! He was very hungry all morning, so we were very happy to let him "eat." I was able to hold him today, on a pillow, and so was my mom. It was pretty painful for him to be moved. His cry is very hoarse and pretty quiet. He is having a swallow study done tomorrow so we can find out if he can try to eat orally. He still receives Tylenol for pain and morphine as needed. His mouth gets really dry, so we wet it with a small sponge and some sterile water.

We were told by our main surgeon today that he may be able to go home this weekend. So, both surgeons have said that. We are a little nervous about that and don't want to rush things.

Grammy and Papa Bausman and our friends Holly and Tyler visited today. Holly took some pictures while she was here.

Day 1 Post-Op

I will warn you that the pictures in this post may bother you. They show all of his lines and tubes. So, if you don't want to see him like that, don't scroll all the way to the bottom.

So far Landon has had a pretty good day. We learned the first time around that we shouldn't rush things, so we are staying calm and taking things one step at a time. Late this morning Landon was extubated. In order to do this, the slowly took him off the medicine that kept him asleep. He has done great since he was extubated! He is still receiving oxygen, but he is breathing on his own. He was on fentanyl for his pain, but they have suspended that and are giving him tylenol every six hours for pain and morphine as needed. He is on a variety of other drugs, Lasix to remove any extra fluid, a steroid to help with swelling, he receives breathing treatments to help with swelling from his breathing tube. (I'm sure there are more and I just can't remember them all!) He has many tubes and wires attached. He has three chest tubes, two pacemaker wires that go to his heart, a catheter, three IVs, a patch on his back to monitor his kidneys, a patch on his forehead to monitor his brain, a pulse/ox button on his toe, and of course the leads that monitor his vital signs. Last night a team from EEG came and put 23 electrodes on his head to monitor his brain activity to make sure that he didn't have a stroke or seizure. Once they extubated him, they removed those electrodes also.

We are told his is doing very well. His heart is functioning great and his breathing is much better. The doctors were concerned about the possibility of his diaphragm being damaged, but they did a chest xray and saw that it is fine. He isn't waking up too much. A couple of times he opened his eyes for Nick. He is a bit restless, but seems to be comfortable. The doctors are hoping that he will wake more tomorrow and will possibly start eating. We'll see...like I said, we aren't rushing anything. As before, we are very pleased with the care he is receiving. One of the surgeons stopped in today and said that he will be here all weekend and would like to be able to send him home at that time. We aren't getting too excited about that. Landon likes to do things on his own time, kind of like his dad.

These were from last night. In the bottom one, you can kind of see the machine he is connected to for medications. He also has wrist restraints so he doesn't pull anything out. Those have been taken off. We used socks as mittens and have even taken those off for a while also. However, as he wakes more they might have to be put back on.

Today's surgery

Well...we have had  a very long day! We arrived at the hospital around 6:15 am and went back to our room fairly soon after. Landon was taken from us at 7:30 to be prepped for his surgery. The surgery started at 9:30 and they began closing him around 5:00. They had a lot of work to do! The doctors weren't happy with where the button for his feeding tube was, so they began by removing that so it didn't cause any problems. Then, they patched his lower hole, which was a concern for them. It turns out they were happy with where it was and the process went very smoothly. They placed a device that closes the hole and once they got it placed there wasn't any extra blood flowing through it. That is the goal for that device and hole, so the first phase went well. Then Dr. A moved on to repairing his aorta. It turns out that it was re-narrowing, but he had some scar tissue from the first surgery that was creating a problem. He cut the arch of the aorta and placed the patch so that the aorta is much bigger now and blood can flow better through it. Then, they moved on to patching his other VSD. That went so well, they patched the hole that he had in his atrium. (I know what many of you are thinking. I thought he only had two holes? He had three, but the third wasn't as much of a concern so we never really talked about it.) They thought that they might as well patch that one since they were already in there. They allowed him to wake up for a brief period of time to check his movement and all was well. He was moving his arms and legs well, so they put him back to sleep so that he could rest and recover. They are monitoring his brain closely because stroke or seizure are a possibility with this surgery.

He handled the surgery very well considering he was put on by-pass at 3-1/2 months old. We are hoping for a speedy recovery and as much comfort as he can have. It is now 6:40 and we haven't seen him since 7:30 this morning. We can't wait to see him! We did not have a comfortable place to wait during the surgery. The pre/post-op rooms are small and do not have comfortable chairs! Landon is back in the room we had before, not the room we shared, so we are very familiar with that room. We have been told that he will have about twice as many tubes and lines than he had the first time, but we don't care, we just really want to see him!

We thank everyone who has prayed for Landon and who has asked others to pray for him! We would not have made it through this without all of the prayers and support. I apologize that I don't have pictures with this post. I didn't have time to upload his Easter pictures before we left. Hopefully I will have some soon. All our love and gratitude to everyone!

Surgery coming soon

After a trip to our pediatrician, he recommended that we see our cardiologist as soon as possible. He was bothered by Landon's labored breathing and ordered a chest x-ray. The x-ray showed fluid around his lungs, so he suggested we see our cardiologist as soon as possible. Our cardiologist is out because he had surgery, so we went to the UW last Thursday. We started our appointment with an echo to evaluate the holes in his heart and to check his aorta as well. They determined that the holes aren't getting any smaller and his aorta is beginning to narrow again. So, Landon will be having another surgery on Tuesday, April 2nd to repair both problems.

This surgery is much riskier than his first surgery. We will have two surgeons, one to patch the larger of the two holes and one to patch the aorta. One of them is the same surgeon that did his first surgery and we really liked him. They will be entering Landon through his chest. He will be put on by-pass with a heart and lung machine. His body will be cooled dramatically and he will have to receive a couple units of blood. This is a very scary surgery for a 3-1/2 month old. Nick and I talked last night and find this surgery just a bit different than the last one. With the last surgery it all happened to quickly that we didn't really have a lot of time to think about all of the side effects. With this surgery, we have a week and a half to think about what Landon will be going through. We are staying positive because he did so well with the first surgery. We weren't shocked that they told us he needs this surgery soon. We saw signs that surgery would be needed sooner than 6 months down the road. His appetite had decreased, he wasn't gaining weight as quickly as he had been, and he was getting tired while he was eating.

We ask that all of you continue to pray for Landon and a for his surgeons. We have been told that Landon could be in the hospital for two weeks. But that could be long, but he could need to be there longer. The good news is that if he struggles to eat again, we are equipped to handle that with his feeding tube. We were told that after his surgery and after he is recovered, he should be a completely different baby.

In other news, Landon continues to show progress with his motor skills. He is now grabbing at things and holding things. He chews on his thumb now sometimes. My dad said that last week he almost had a giggle out of him. We are so anxious to hear that first laugh! He is just an incredible little boy and brings us so much joy!

Just chilling on the couch...

3 months old!

Landon is 3 months old today! And, Happy St. Patrick's Day! Landon hasn't had many changes. He is still gaining weight, but not as much as we would like to see. His eating has been a little inconsistent over that past couple of weeks, but this week was much better. Our cardiologist would like to see him eating 20 ounces a day. He hasn't eaten that much yet, but he is eating 18-19 ounces a day. He goes to see his pediatrician on Tuesday, so hopefully we get good news about his weight then. He had his feeding tube button changed on Monday and that went very smoothly. We learned how to do it in case it comes out when we are at home.

I returned to work on March 6th, so Landon goes to my parents' house every day. He continues to change all the time! He is getting better with his tummy time, which hasn't been his favorite thing to do. His legs are getting very strong. When we set him on our laps facing us, he pushes himself up to stand up. His smiles keep coming. He seems to find everything funny. Today, I had him next to me on the couch and he pooped and farted. He laid there smiling at me like he was thinking, "Sucker! You have to clean it up!" He has started drooling...a lot! He brings his hands together and holds them and he also has started holding on to things. When I look at a milestone chart, he is on track with everything except rolling over. He hasn't done that yet, but hopefully that will come soon. He loves to watch TV! I think he loves the colors and all the movement.

He attended his first basketball games over the last couple of weeks. The Cuba City girls played in Monroe, so we went for the 2nd half. And the Cuba City Boys played at State, so we went to that also. Can't wait until he attends his first track meet!

He loves to swing!

11 weeks old today

Landon is 11 weeks old today! It's hard to believe that he is already that old. I return to work on Wednesday, which I have been struggling with for quite some time. I know that almost every mom goes through this, and I know that we are very lucky that Landon will be with my parents, but I can't help but dread Wednesday.

Landon continues to grow and do new things. Last Monday he discovered his fists and sucks on them often. He almost has his thumb, which is not what my mom wants to see, but I'm happy that he is developing his motor skills. He also smiles like crazy and coos with his smiles! They are the most amazing smiles and noises I have ever heard! He usually has a couple hours of awake time during the afternoon, but today he has slept most of the afternoon. He also has been sleeping through the night, about 7-8 hours each night. We feel like we have the best baby!

Big smiles!

Last week we met his Pediatric GI doctor, Dr. Yaffe, who will be monitoring his stomach medications and eventually will be changing his G tube. He was very impressed with Landon and his eating habits. Landon has only used his feeding tube once in 6 weeks! Dr. Yaffe took Landon off one medication. It hasn't seemed to have affected him. The cardiologist put him on a new medication that is supposed to make it so that Landon doesn't have to work as hard to breath and his heart doesn't have to work as hard as it does. As a result of the medication, Landon's appetite has decreased a bit, but it makes sense to me. If he isn't working as hard, he isn't getting as hungry. We go see his pediatrician tomorrow so we will be able to see if he has grown like he should.

He did some new things over the weekend. We celebrated Megan's, Taylor's, and my mom's birthdays at Rocky Roccoco's in Madison and then went to Megan's for gifts and cake, both were firsts for Landon. I also took him outside with me when I went out with the dogs one night. He has the cutest snow suit that belonged to his cousins, John and Anna.

We played "Ice Ball," formerly known as "Skee Ball," at Rocky's.

 He got so tired from winning all his tickets, he had to take a nap.

All ready to go outside!

 Our little Sconnie, wearing his Game Bibs.