Trach Surgery Time Set

Brodie's trach surgery has been set for Wednesday at 3. We are happy that he will get his tube out but very scared for the surgery. We are thinking the surgery will go great but we are anxious about him breathing through a hole in his throat. In case some of you have not noticed there are some new pictures of Brodie on here. We are so proud of him and he looks great. He is doing great with his occupational and physical therapy. They seem very pleased with his progress given what he has been through. Everything is going to stay the same until Wednesday and after the surgery once he heals they will start to wean some medications. We hope you have a great weekend and thanks for all of the support.

Brodie's New Bed

It has been an eventful past couple of days. Brodie has been doing well and has stayed the same the past couple of days. The big news has been his move to a crib. This is so great for him and now he has some things to look at. He has a mobile and an aquarium that he can look at now. I can't imagine how much better this is for him to look at than the ceiling. He also wears clothes occasionally and is starting to be more like a normal baby. He just looks so good lately. We had a meeting with the doctors yesterday and we decided that the trach was the best way to go for Brodie. We are very scared and no parent would like this for their son but if it will give him the best chance for development then we need to do it. The surgery will be on Monday or Wednesday of next week so will keep you posted. Next week will be a difficult one for us but we know that we can make it through anything at this point. In our meeting yesterday you could tell that a month ago the doctors never would have dreamed that we would be in this position. Brodie is truly our miracle baby and we know that each day we have with him is a blessing. I know we would not be here without the prayers of each of you and we would not be as sane as we are without your support. Thanks so much for everything and PLEASE continue to pray for Brodie and our family.

To Trach or Not to Trach?

Brodie has been doing great the past couple of days. For the most part his oxygen has been in the 30's and he seems to be resting better. He is in a little bit of a holding pattern but that will soon change. We are at a crossroad and it is time to either start weaning some of the mess for his pulmonary hypertension or have a trach put in. They want him to be able to do the normal developmental tasks and since he is doing better than ever they think this is the window. It is a risky surgery because of his health but if he gets worse it may not be an option. So needless to say this is a difficult decision of LaVona and I. We have heard many sides for and against and now it is up to us. Some may think that it is good to have the control but with that control comes a heavy burden. You just want to make the best decision for your child. We definitely are not qualified to make this decision since our medical knowledge 3 months ago was nonexistent. We have called a meeting with the team on Wednesday and hope that it will provide us with a clear cut answer. He is doing great and we just want to make sure that our decision does not set him back too much. All we can say is the next couple weeks will be a little stressful. We are so glad that we are even at this point. We will keep you updated on what our final decision is. I will try to get some current pics up so that everyone can see how good he looks. Thanks for the support and pray that we make the right decision.

Brodie Loses His Lunch on Daddy

Yesterday was a good day but they went up on his feeds and it did not sit well with him. I got to hold him and he threw up on me. I wish I could say that it was a wonderful experience but I have to say I was disgusted. Bradie "spit up" on me but this was a new experience. I felt like when we were leaving that the whole elevator was looking around wondering where that awful smell was coming from. Now that I ruined everyone's lunch we did have some news yesterday. The team has decided that Brodie would benefit from a tracheostomy or trach. Although this is not what we wanted to hear we now think it is best for him. The breathing tube is really starting to bother him and they have to restrain his arms so that he will not pull his tube out. If he gets the trach he will move around better, breastfeed and get the tube out of his throat. No parent wants their child to have to get a hole in their throat to breath but if he can start to be more developmentally appropriate then we are ok with it. He is stable right no but there are risks with this surgery. They are going to make sure that the echo does not get worse on Monday and then they might do the surgery middle of next week. This is just another hurdle and hopefully things will go great. His oxygen has been in the 30's for a couple of days now and he looks better every day. Thanks for the prayers and we will keep you posted on when they will do the trach.

Brodie on the Floor

Today we came into the hospital and Brodie was on the floor in a boppy. This is so crazy how far he has come in a short period of time. He has been doing great the past couple of days. His oxygen has been in the 30's and today it was 33% for a little while. Yesterday physical therapy came by and worked with him and he is going to be doing it 3 times a week. He just looks so good and he is not having the crazy up and downs that much anymore. Yesterday he had his BNP and echo. His BNP was 52 which is fantastic because anything below 100 is NORMAL. We have not talked to the pulmonary team but in rounds they said that the echo was relatively unchanged. This was a little bit of a disappointment because we assumed it would have improved. He might get a swing this week and start getting out of bed more. We are so happy with the progress he has made and we are so proud of him. He still has a tough road ahead and a few hurdles to get over but we can still hold on to the fact that he is exponentially better than he was before. Thanks to all of you for your kind words and donations. We are now only $432 from our goal. We are so blessed to have wonderful people in our lives and also to have met some wonderful people through this journey. Hope everyone enjoys the cooler weather and we will continue to let you know how Brodie is doing.

Keep it up Brodie

Today started out good for Brodie but for the last few hours he has been up and down. We think that it is because of his secretions and his withdrawals. His oxygen has been in the 40's most of the day but he seems uncomfortable at times. I think it is time to up his dose of methadone. LaVona got to hold him for over an hour so she was excited about that but also stressed because he gagged and choked a couple of times while she was holding him. Yesterday was interesting day to say the least. He was really up and down because of all of his secretions and agitation. Before I tell this next story I would like to preface it by saying that our experience at Texas Childrens has been amazing and we have received nothing but the best care. The doctors and nurses here are amazing and we don't know if Brodie would have made it this far if he was somewhere else. Yesterday Brodie needed an X-ray because he was so up and down and because of all his secretions so he got it done around 4. After his X-ray we heard his nurse gasp and run to get another nurse. They looked at it and soon after the nurse and the nurse practitioner came in and said they had bad news. They then told us that his patch had separated and they would need to fix it because his stomach was back in his chest. We were shocked but knew that it could be fixed and hoped that Brodie was stable enough to make it through. They called the surgeon and all the doctors were over. The attending called the fellow and told her that she needed to look at the X-ray since she was on for the night. When she looked at it she said, "that is the X-ray for the baby next door". Apparently the tech had labeled the X-rays wrong and the baby next door that recently had been admitted had CDH. You can imagine how happy we were that this was a mistake and that Brodie was still good. The great thing is that we have been on such a rollercoaster that bad news does not hit us like it used to. It is not that we don't care it is just that we have grown to trust that everything will be ok. Just another day in the life of the NICU. Thanks for all of your prayers and support. We hope everyone has a great weekend!

Uneventful Day

Today has been really uneventful for Brodie.  They decided not to make any changes on him today since they have made a few the past couple of days.  The pressures on the ventilator are down and he just has flolan as his only drip.  His oxygen is up to 61% so that is a little bit of a bummer but overall he is hanging in there nicely.  Today has been very boring up here and it makes you realize how crazy things have been the past two months.  Usually there seems to always be something going on but today he has just been sleeping.  It kills LaVona every time he cries because she can't do anything about it.  Even though we can hold him it is a huge process and you can't just pick him up when he starts crying.  I hope that we can get his oxygen back down so that they can start to try weaning the flolan.  As I mentioned in a previous post this medicine is not easy to go home on.  He will have to have a central line and have the medication in a backpack so that it can be constantly be going in him.  Because of this they want to try to get him off of it but we are very scared to wean it because we think that is what helped to get us here.  Thanks again for your prayers and support.  We have been able to raise $2600 for CDH research.  We are matching $2500 and another CDH parent is matching $1000 so we still need $900 to reach our goal.  I can't tell you how great it would feel to be able to write a $7000 check for CDH research.  Thanks to all that have donated and it is not too late to buy a bracelet or donate.  We love hearing the stories of how the bracelets started a conversation and how some of you have been able to share Brodie's stroies with others.  We are so amazed everyday by all of the love and support that were are receiving.  We can't wait until the day that we can bring him home and when we do just know that each of you had a part in bringing our boy home.   

Immunizations and Daddy Holds Brodie

Yesterday Brodie had a great day. He pretty much was steady all day and I got to hold him. I never dreamed that we would be back in this position. He has come a real long way in the last couple of weeks and it seems like we have turned a corner. Please do keep in mind he is not out of the woods and he has a long way to go but we are so happy to be where we are. Yesterday he got his first immunizations and he took it pretty well. They took him off the lasix drip and are now just giving it to him every 8 hours. This means that later today they will take out a picc line. Now he only has one left. Today he is a little agitated and having a little bit of a hard time breathing. They have gone down on the ventilator settings the past couple of days so they may have to go back up on them. Now that he is awake we can see him cry (no noise) and sneeze. These things may seem small but it is great to see Brodie doing some normal baby functions. LaVona is getting ready to hold him so hopefully he will continue doing great and we can make holding him a daily thing. Today he may also not be feeling well because of the shots that he got. I can't wait to see what the rest of the week brings and I know that our little fighter will keep up the good work. Thanks for your continued prayers and support.

Keep Going Brodie

Brodie is having one of his best days ever. He had a great weekend and LaVona got to hold him for almost an hour yesterday. He just looks so good and right now his oxygen is at 42%. I couldn't believe it when we saw his oxygen that low. It is so amazing the progress that he has made over the last couple of weeks. He is having withdrawals from the fentanyl that he came off of but other than that the weekend was smooth sailing. Today he has another echo and BNP to see how his pulmonary hypertension is doing so we will let you know those results tonight or tomorrow. My guess is that it will show improvement but then again what do I know. LaVona is home with Bradie today because he decided to wake us up at 3 this morning by vomiting next to our bed. He doesn't have a fever and he is feeling better now. I am pretty sure he is suffering from daddy and uncle Aaron took me to the Texans game and let me eat and drink throughout the entire game whatever I wanted itis. I can't say much about my parenting skills but at least he had a good time. I guess I will not be receiving Father of the Year again this year. We hope that Brodie continues on this track and we are excited by what this week could bring if he does. Hopefully they will start physical therapy soon and get him stronger. Hope everyone had a great weekend and we appreciate your prayers and generosity.

Happy 2 Month Birthday Brodie

Today was Brodie's 2 month birthday and we are so happy that we made it to this point.  We have read alot of stories about CDH babies and alot of the babies that don't make it are lost around the 2 month mark.  I can't say how this is going to turn out but we feel really good about things today.  He really didn't have the greatest day but he looked really good.  His face is not as swollen and he looks like the other babies now (only cuter).  The nurse even sat him up for a few seconds and it just seems like he is able to do more than just lay there and not move.  We have a long way to go and we know the progress is going to be very slow but he just seems like he is headed in the right direction.  When they do assessments or move him he does a whole lot better and recovers quicker.  Brodie is here because of the amazing care at Texas Children's and also all of the prayers from all of you.  Hopefully he will have a good day tomorrow. 

Brodie Does Not Like Change

Brodie has been moving in the opposite direction the past day and a half. He is very alert and awake but they have had to go up on his oxygen to the mid 70's. We were anticipating that things would go this way after he came off of the steroids but we were hoping that it would not happen. We need to be thankful for where we are at now because even though it is not as good as a couple of days ago it is far better than where we were at almost two weeks ago. We have been at this for almost two months and the setbacks still hit you hard even when you know they are coming. LaVona called in the middle of the night last night and they said he was on 75% and it just killed us both. It just seems like with each up we think we are going to bring him home and each down that we won't be able to. We know this is not the way we should think but it is so hard to think any other way. The one thing we do know is that whichever way this turns out our lives will never be the same. We talked to a mom that has been here for a month longer than us and she told us not to stress about the bad news because it just lets you know what to pray about. As long as we are here there is still hope and he is getting the best care. Please know that even though we may seem down because of this post we are actually not doing too bad. The doctors seem to think he is just having some issues with some of his medication changes and they are encouraged by the progress of the last week. Hope everyone has a good rest of the day and an even better weekend. Thanks to everyone that has purchased a bracelet and donated for CDH. We will donate the money the week after the 21st so there is still time to help out.

Brodie's Looking Better

Yesterday was an up and down day for Brodie. The good news is that the downs were not near as bad as they were a little over a week ago. Brodie continues to lose a little fluid each day and he looks great. He still is swollen but it is a vast improvement from a week ago. Yesterday was the last day of his steroid so we are hoping that he does not have a setback. He is still opening his eyes and looking around and moving quite a bit. He is on 57% oxygen today and there are no real plans for any big changes. They are changing his pain medication and going up on the flolan. Yesterday they weighed him and he was 5.3 kg which is down from 6.2 kg this past Monday. We are pleased with his progress and are thankful that he is doing better. We still have a long way to go and alot of hurdles to get over but with Brodie's strength and prayer I think we can get him home. LaVona and I are in a constant state of exhaustion and have just accepted that this is how we will feel for a little while. Who knew that sitting in a room with your son all day could be so draining. We can't thank you enough for all of your prayers and support. Have a great day!

Slow and Steady

Another good stable day in the books for Brodie. His oxygen stayed in the 50's again all day and they were able to go down on the ventilator pressures a couple of times. Tomorrow is the last day of his steroids so hopefully he will continue his progress the rest of the week. He is still more alert and keeps his eyes wide open when he is not napping. Unfortunately the baby across from Brodie did not make it and it hit us pretty hard. It all happened just outside Brodie's door and to hear the family crying out was very difficult. This has been one of the hardest aspects of NICU life. It also makes you respect the doctors and nurses and we are thankful for them. They have been wonderful to us and what they do is very difficult. We just pray for a good day tomorrow and thanks to all for everything.

Chaos in the NICU

This morning has been a little crazy and emotional. Yesterday Brodie had a good day and he was alot more active. We got some really good pictures of him with his eyes wide open. He was also waiving his arms around and kicking his feet a little. It is so nice to see him like this and LaVona even got to hold him up while they changed his bed. His oxygen was in the 50's all day and he looks much better now that he has lost a little fluid. We are so happy with all the progress but there is one issue that has us concerned. Right now he is on a five day steroid and they think that his progress may be due to the steroids. He can't stay on them for long because they are not good for you so hopefully he will not take a huge step backwards when they stop them. When we got here this morning Brodie looked like he had put some fluid back on so that had us a little down and then during rounds the very tiny baby across from Brodie's room started to have alot of problems and I don't think that she is going to make it. This is hard for us to see because you feel for the family and it just makes all of this way too real. LaVona struggled whether to go comfort the woman because she was all alone but then I look up and she is headed her way. She just hugged her and prayed with her and it made me so proud to call her my wife. Even with all we are going through she still sets everything aside to comfort another mom. Some days are more difficult than others and our hope is that today will get a little better all around. As I type this the monitor is beeping but this time it is a good beep. His oxygen saturation is at 100% so it sets the alarm off. Those are the beeps that we like to hear. I will post an update later tonight to let everyone know how the day goes. Please pray for the family and their baby across from Brodie. No family should ever have to go through this and our hearts go out to them. Hope everyone has a great day and I will try to post the pictures of his eyes open later today.

Great Weekend

Yesterday wa a great day. Brodie has been doing great and he is down into the 50's on his oxygen and has not had any real bad moments. We were able to take Bradie to the Texans game and he had so much fun. He also got to see his baby brother and he enjoyed it as much as Brodie did. When Brodie hears Bradie's voice he seems to do even better. It was just a wonderful day and for the first time in a while both of our boys were having a good day. Right now Brodie is on 50% oxygen and he has also started to not look as swollen. It is nice to see his facial features starting to come back. On Friday he was getting to the point where his face was so swollen that his ears were surrounded by his face and head. The steroids and lasix seem to be working and he has had two days of negative fluid balance. As I type this they are in the room doing an echo. Hopefully it will show that his pressures have gotten better and that we are making progress on his pulmonary hypertension. It is amazing what can happen in a week. Just last Sunday we thought that we were losing him and now he is on 51% oxygen and stable. We know that it can turn the other way just as quick but right now we will just enjoy the progress he is making. We are really wearing down at this point. We do not have any off days, weekends or vacations. We would not change it for anything. Each day that we get to spend with Brodie we know is a blessing and we can't wait to see what the future holds for him. We would not be able to do this if it weren't for everyone's kind words, support and prayers. Please keep them coming and hope everyone has a great Monday!

Slow Steady Day

Brodie was steady most of the day yesterday and did not change much. He started the day on 78% oxygen and he is ended the day on 78% oxygen. The good news is that he seems to be a little more stable but the bad news is that we need to get him at least into the 60's so that they will start to wake him up. Yesterday morning's meeting was really good. All of the top doctors for neonatology were there and they all put in their ideas and came to a consensus for his future care. We don't know how things are going to turn out but one thing we are sure of is that he is getting the best possible care. Most of the top neonatal doctors are involved in his care and are invested fully in Brodie and will see him through until he leaves the hospital. They are increasing his flolan and lasix. If the increase in lasix doesn't decrease his fluid retention they will start him on a steroid. We hope that he can start to shed some of the fluid because it not only makes it harder on his lungs and heart to function, it is getting more difficult to see him so swollen. Overnight and this morning he has stayed the same except for one major episode he had in the middle of the night. His heart rate went down into the 40's, they had to bag him and were about to start chest compressions. Luckily his heart rate came back up and he had no other issues. Hopefully they can start to wean his oxygen today and we can get him moving in the right direction. Thanks for all your support and prayers. Sorry we didn't post yesterday we are exhausted and our brains are fried. We hope everybody has a great weekend.