Finally a follow-up :)

So many people have asked me to write what is going on with AJ since his last heart surgery in Michigan. I finally was able to take the time to do so. I also figured that this would be a good opportunity to look back on the last year since AJ just celebrated his birthday!

I can't believe it has already been a year. A crazy year to say the least. I still remember June 20, 2010 like it was yesterday. Literally. Tom and I were at the Baum lake house for the weekend. I laid out in the lake the entire day before so I had a nice tan with a minor sunburn. That morning Kim asked Tom and I if we wanted to go out on the boat and watch them ski. We declined the invitation to get a few more minutes of sleep, so we thought. I had some back pain but I just figured it was from sleeping on a bunk bed and not my pillow-top mattress. Haha was I wrong. I started to get cramping in my abdominals. This may be too much information, but I thought I had some gas and was constipated. Wrong again. I went to the bathroom. It all came rushing down. Amniotic fluid. Everywhere. I knew I was not peeing my pants. I yelled for Tom. He came in and looked scared. I told him to get Aunt Lynn. She came to the bathroom. I showed her the fluid and then my mucous plug broke. I'm pretty sure she said "that's not good." Soon after, I began to freak out. Tom called the OB-GYN who was on call. Grandma Baum and Aunt Lori gave me some towels to help absorb the fluid. I ate a chocolate donut while waiting for the doctor to call back. Since we were almost 2 hours away from the hospital, he advised that we leave as soon as possible. We packed our bags, Aunt Lynn gave Tom some coffee and me some more donut holes, and we were on our way to Carmel.

It was the longest car ride of my life. I was crying the entire time. Tom kept telling me to wipe my face but the tears would not stop. I knew it was too early. I saw babies in the NICU before and I did not want my baby to be a "NICU baby." Tom called the moms and they both were on their way to the hospital. I, being obsessed with work, texted my supervisor so she would know I was not going to be at work the next day. Tom kept track of my contractions. They were getting strong very quickly. Looking back, I wish we would have stopped at McDonald's for some food. I was pretty hungry but was too worried to think about eating until we got to the hospital.

We walked in the hospital and went to the maternity ward. We went straight to triage. When the nurse saw my amniotic fluid leaking through a hand towel AND my shorts, she said we could just skip triage and go to a room because this baby was coming. We got into my room. They hooked me up to everything and told me to relax. An echo was completed. Dr. Dupler said AJ was in the right position and looked well. He said to plan for a long labor. He guessed that AJ would not come until the next day. Was he wrong!

I was eating my ice chips, trying to take a nap, and trying to get through the contractions as best as I could. Tom was letting everyone know what was going on. The moms finally arrived. They took turns at my bedside. My contractions were getting to the point of complete pain. I was having a lot of back pain and could not get comfortable. Everyone was rubbing my back but nothing helped. My nurse, Amy, came in. I told her that I think I needed some pain medication soon. She said she would get them. I began crying again, almost hysterically. It felt as though I was being stabbed in the back. Amy said that is not a good sign. She looked at AJ's and my monitors. The next thing I know, there are about 15 people running into my room. I can barely breathe at this point. Amy put some oxygen on me. The nurses were talking about AJ's heart rate dropping rapidly. Then they called the on-call hospital OB-GYN over the speaker system. He comes running into my room. I remember him because his glasses looked like coke bottles. He looks at the monitors and says that I need to have an emergency cesarean section. Amy tells Tom that he cannot come with me because there's not enough time for him to scrub in. I can only imagine how he felt at that time.  

The OR was very bright but it was hard to see because of the tears in my eyes. The anesthesiologist asked my weight and asked the doctor if there was time for an epidural. He said there was no time. Next thing I know, I'm in recovery. I still wasn't able to grasp what had happen and what the future was going to be. The nurses said they would take me passed AJ in the NICU on the way to my room. I was so drugged up, I barely remember seeing him. I couldn't even touch his hand. My worst nightmare had become my reality.

After 30 long, emotional, and stressful days in the NICU, AJ was finally able to come home with us. It was not what we anticipated at all. Every day was a challenge to get AJ to eat. We had doctor appointments every week. Eventually, AJ stopped eating and continued turning more blue. He had his first heart surgery on August 31, 2010. His second heart surgery was September 13, 2010. We finally left the hospital on October 5, 2010. AJ came home with a NG tube in his nose and was fed only from that. On December 13, 2010, AJ had surgery to place a Mic-key button via G-tube in his stomach. December 31, 2010, AJ's G-tube was clogged by his medications. He had to get a new button inserted. January 3, 2011, AJ had a heart catheterization. February 4, 2010, AJ had another open heart surgery at the University of Michigan. I would define that as a crazy year.  

AJ is almost 13 months old now. He still has the G-tube and will for awhile. He eats more food orally but we are still cautious because he still has aspiration issues. He is crawling all over the place. He cruises on the furniture and will hopefully be taking his first steps in the next few months. Thankfully, we have some of the most amazing and dedicated therapists, which have helped AJ reach the majority of his developmental milestones. Everyone says that if they didn't see AJ's scar on his chest, they would have no idea that such a happy baby could have experienced what he has. He truly is our miracle baby. We've made it this far, so we can make it through anything. Thank you to everyone who has prayed for us, supported us, and helped us in any way. We could not have done it without all of you! Love and peace always :)        

Such a good day! AJ had his sedated echo, EKG, and chest x-ray this morning. His heart is functioning like it should. There still is some fluid around his heart, which will have to be monitored. His pulmonary arteries also have some narrowing, which we knew about. Those will also have to be closely monitored. In addition, the echo showed that there is fluid around the patch of his VSD. That is normal. Hopefully, tissue will grow around the patch and close the holes. Other than that, he looks great!

So with all that great news-we are ready for discharge!! The plan is to be discharged sometime tomorrow. I'm hoping we can get a feed in and then hit the road! I also pray that the weather will not be too bad and the roads clear.

We will follow-up with his pediatrician this week and cardiologist within a week or two. And then by next week he should be able to resume OT and PT! We can make plans for him to have another swallow study down the road, after he is off Enfaport.

Due to a conduit being placed this surgery, he will have to have lifelong surgeries as he grows. Right now they hope that he can make it to 5 years old before his next surgery. But that does not mean that it will not be sooner. It depends on AJ and we all know that he has his own agenda! I pray that he will be able to start eating orally again and will catch up on his milestones. We're just taking it one day at a time and enjoying every last minute that we have together.

Thank you all so much for sharing this journey with us. Your words of encouragement, prayers, monetary gifts, and support have truly helped us get this far. We are so grateful to have so many wonderful people in our lives.

There are many families that have left the Ronald McDonald House without their child. I cannot fathom how that would feel. We are very blessed and fortunate to be able to take AJ home. Without a doubt, he was put here for a reason. His angels continue to stay close and watch over him. :)  

I cannot believe that 8 months ago today, my water broke while we were at the lake and we rushed to the hospital. Unexpectedly, baby AJ, our miracle baby, was born. What a journey it has been. Through the ups and downs, we are so grateful to have made it this far.  

Today was a great day! AJ is so much more happier! They moved him to the general PEDS floor! They took him off of his monitors and only did spot check vitals every 4 hours. It was so nice to be able to pick him up without worrying about tripping over all the wires.

His labs today looked great. His sodium levels are just a little low but that should regulate as we decrease his diuretics. They continue to ween him off his other medications. They still plan on having the sedated echo and EKG in the morning. If they look well, then we will start planning for discharge! Possibly, this week! I really hope so. I'm ready to sleep in my own bed and I think AJ feels the same way. I'm keeping my fingers crossed :)  

Today was a good day. Tom was able to spend some time with AJ. He was super excited to see his daddy. He just kept looking at him in awe. It was so funny. Overall, today was better than I expected. The x-ray this morning showed good results. There is no air in his lungs anymore and no major drainage to be concerned about. They saw a very small amount of fluid on the side but it is nothing that they are worried about right now. So as of right now, no more chest drainage tubes!

He is still vomiting after feeds and has runny stools. They decided to start him on a probiotic. So, hopefully, that will help him within the next few days. Labs will be taken tomorrow to see where his levels are at. They will also try to ween him off of the Valium soon.

They plan to complete a sedated echo and EKG on Monday morning at 8am. Depending upon those results, we will either be near a discharge date or will still be here for awhile. I am hopeful that all will be well and we can go home sooner rather than later. :)  

Today was a much better day than yesterday. He did not show any symptoms of trouble breathing over night. He is still on oxygen. They said that it has really helped with lifting his lung back up. They are going to complete another x-ray tomorrow morning. If that shows more accumulation of fluid then they will have to insert another drainage tube. I pray that there is not accumulation and that he will be closer to going home.

Regarding his vomiting and loose stools, he still has them frequently. They have formed a new hypothesis. At first they thought it was withdrawal but now they are thinking that it was from the antibiotic that he was on. So they stopped the antibiotic and started him on Valium. They cannot and will not change his formula. So let's hope that it was from the antibiotic and nothing else. Or else I will just have to put up with it for the next 5 weeks.

I have also come to the conclusion that he probably will not have a swallow study while here. When I try to feed him 1) it's difficult for us to get comfortable (not many seating options) 2) there are so many people around that he cannot focus 3) there's just so much going on with him right now that I think he needs time to adjust and get situated before introducing it in order to be successful. Fortunately, OT said that is not a problem and can include the study in our discharge follow-ups.

Overall, today was good. He was happy and getting back to his normal self. I really hope that his drainage has subsided and he does not need a tube.  I'm not sure what he is going to do when he does not have dozens of people to look at all day. But I know he will not be missing the nurses. He has figured out who they are and screams when they even get close to his crib. He's a smart little baby.:)

 Can you tell that he is teething?? haha

He was happy that he just finished the chest x-ray and went for a ride in the stroller!

There's no easy way to say this other than today sucked. This morning they took out AJ's pigtail and right pleural drainage tubes. The only reason why they took out his right pleural was because a suture came loose and air was able to pass through it. The air could actually be heard from his chest. Thus, this morning he was the happiest baby ever because he did not have any tubes in! We snuggled, played, and just had a good time. His demeanor completely changed without them. I was loving it!

Due to the tubes being removed, they wanted to complete an x-ray to see if there was still an excessive amount of drainage since they initially did not plan on taking out the right pleural. The x-ray did not have any good news. There still is drainage on the right side. That means they will place another drainage tube on his right side tomorrow.

Also, the x-ray showed that his left lung is beginning to collapse where the tubes were removed. That means that he is back on a full liter of oxygen. They are trying to "blow" up his other lung back to normal. The plan is that they will watch him closely tonight. If they see that he is having trouble breathing or stops breathing-they are ready to perform an emergency procedure. This is just one of those "bad" side-effects of the drainage tubes. It pretty much freaks me out.  

More negative news: he is still vomiting chunks of formula. The new idea is that he may be withdrawing from Ativan. So they started him on some Valium. They do not want to change his formula just yet. They will reevaluate it sometime tomorrow. The dietician recommends changing from bolus feedings to continuous. I'm not sure how I feel about that but if it will stop him from vomiting-I'm all for it!

It's been a long and draining day. I feel like an emotional wreck. I don't know how or what to think. I guess we will just see what tomorrow brings.