Merry Christmas

As you all can imagine we had the best Christmas ever.  It was great to have Brodie home and Bradie loves his baby brother so much.  The only thing he can't handle is when someone calls Brodie a big boy.  He immediately corrects them and says that he is the big boy.  This was the first Christmas that Bradie has understood what was going on and he got everything that he wanted.  Brodie got to see family and went outside with his brother while he drove around his new car.  Having Brodie home has been great but also has brought on new challenges.  The nurses have been pretty good but having a stranger in your house for 18 hours a day is never easy.  It is great not having to drive to the hospital every morning.  Brodie has been doing so good latley and he is becoming more active.  His big issue right now is throwing up.  He has been throwing up about six times a day so last Wednesday we took him to the pediatrician.  He seemed like it wasn't a big concern but we just need to keep an eye on it.  It is tough when he throws up though.  It isn't real easy changing him, washing him down and cleaning the trach ties and gauze.  There have been very few other issues but we did have our first visit from the EMT's last night.  When LaVona was changing his diaper he got really mad and started turning blue for no reason.  I suctioned him and he continued to go down on his saturation and went down into the 50's. LaVona started to bag him and he started to come up but he was coughing up blood through his trach.  Our sister-in-law called 911 and the EMT's came soon after.  By the time they got there he was doing better but we decided to let them come take a look at him.  We are not sure what the blood is from but it stopped and there wasn't a whole lot of it.  Everything together just scared us and it is better to call them and not need them than to need them and not call.  We were in between nurses so it was all on us to get him back to where he needed to be.  LaVona did a great job and did not panic at all.  She just did what he needed and focused on getting him better.  I am going to post some pictures later so look for those soon.  It still amazes us every day that he his home and we are so blessed to have such amazing boys.  We hope that everyone had a great Christmas and has a Happy New Year.  I know that next year is going to be the best year of our lives.  This past year we have been through so much but are so thankful for where we are now.  We hope that each of you has a great year and we look forward to sharing Brodie's progress with you.  Thanks again for all of the support and prayers. 

HOME

We officially made it home. I can't begin to tell you how great it was to see him come through the door. He touched so many lives at the hospital but home is where he belongs. We are so exhausted and will need to catch up on rest so right now it is hard to fully enjoy the moment. What him coming home symbolizes is what we are so happy about. This journey started for us back in April and we were not sure from the start if we would be bringing a baby home. We have been to many doctor's appts, ultrasounds, sleepless nights and very stressful times. All that said I sit here typing this as the happiest and proudest father. We beat the odds and our family is complete. The doctor and nurse practitioner both told us today that he was their first baby to go on flolan, come off and go home. We have a fighter and can't wait to see what the future holds for him. If he does nothing else in life he will still have touched more lives than most people. Something tells me that he will continue to do great things and continue to amaze us. He seems to be happy at home and enjoying his new surroundings. LaVona and I would like to thank everyone for the outpouring of support for our family. You kept us going and gave us words of encouragement as well as donated money so that we could donate $8000 to CDH research. We won't forget a single thing that was done for us and will never be able to thank you enough. The journey is not over and we will certainly keep you updated. We have to get used to nurses in our house and it is a bit uncomfortable but we can get through this as well. Hope everyone has a great week and thanks again.

Goodbye C48

Brodie no longer has his hospital room at Texas Children's.  We have moved to a room and have to prove that we can take care Brodie by ourselves and if we can we will be leaving here around 10 on Monday morning.  We got in here around 3 and things have been running smooth so far.  Brodie seems to be happier now that he is out of there and has more things to stimulate him.  We finally feel like he is ours and it feels great to be able to take care of him.  Brodie will certainly miss his nurses and so will we but it is time for him to come home.  We have everything ready in his room and so far it does not look like a hospital room.  It is hard to believe that it has been four months and that all of this is coming to an end.  We have had some really bad moments up here but have also had some really great ones.  This process has taught us so much about life and what is REALLY important and I hope that some of you have taken something out of our experience.  We are thankful for everything that has brought us to this day and we know that things could have turned out different.  We saw all too often it turn out the other way for families and also for other CDH families.  We will never forget that Brodie is a miracle and that he beat the odds.  I would like to thank each of you for following this blog and showing so much interest in Brodie.  Each of you have helped us through the last 132 days.  Your prayers helped keep Brodie alive and your kinds words helped to keep us going.  Our journey is far from over but Brodie is much healthier than he has ever been and the doctors feel like he could get the trach out some time right before summer.  Please continue to pray for him and our family as we move into the next phase of our new lives.  We will keep you updated on our "rooming in" and be looking for the "We're Going Home" post.  Also, I will be posting some new pictures after this post.  Hope everyone has a great weekend.

Brodie's First Ride

Things have been going great lately.  We finally decided not to do the helmet or the g tube for his feeds.  We went back and forth so many different times and at one point we were sure that we were going to do both.  We finally decided that it would be best just to see what will happen when we get home.  Most people think that his head will get better and also that he will be able to take a bottle or eat rice cereal within the next couple of months.  For the past five days Bradie has been sick with bronchitis so we have to get him better before we bring Brodie home.  On Monday and Tuesday Brodie seemed like he was bothered by something as well.   They think that he had a little infection but were pleased that he didn't get too sick and handled it well.  Life has been crazy for us these days.  We have been trying to get Christmas finished for the boys, learn all we can about Brodie's care and always seem to be meeting with someone.  I think we are learning alot and are ready for our "rooming in" on Saturday and Sunday.  We have to stay in our own room at the hospital for 48 hours to show that we can take care of our son.  Yesterday Brodie went on his first trip.  We were able to put him in a wagon and take hime around the unit and even outside.  The sun shocked him but he seemed to really enjoy it.  I will post some pictures soon.  On Sunday we went to dinner with the Brazilian doctor that is doing research on CDH and had a great time.  He is an amazing man and he always tells us that his life's purpose is CDH.  This means so much to us because we don't want any other families to have to go through what we have been through.  I will say that even though we are more than ready to bring Brodie home it will be a sad day as well.  We have met so many wonderful people and are thankful for each doctor, nurse or family that we have met over the last 4 months.  We are also thankful for the support of each of you and hope that someday each of you can meet Brodie and see one of God's great miracles.  Yesterday Brodie's first doctor was walking by and stopped in to see him and he was speechless at how great he looked.  I know that we will never be able to thank each of you enough for what you have done for us over the last four months but please know that you were are part of this journey and we will never forget that.  Monday will be the best day of our lives and a day that we didn't think would come.  We will keep you updated on how things are going on Saturday and Sunday.  Have a great weekend!

Less Than Two Weeks

Things have been going great and hectic up at the hospital. Brodie has been amazing and he has progressed to doing 8 hours on his trach mist collar. The goal is 12 hours a day on the mist collar and the vent at night and it looks like there should be no problem with that. He finally got his hearing screen done and he passed. We were always a little scared about that because of the stroke but were happy that he passed. LaVona changed his trach today and did outstanding. We have learned alot and still have a few things to do before we can leave. Right now there are a couple of decisions that we have to make. His head is a little misshaped because he was always laying on his left side so we have to decide whether to do a helmet or not to correct it. The second issue is whether to go home feeding through the nose or get a g tube. If we do the g tube he will not have anything on his face and he will not be trying to pull it out. The bad things are that it is another surgery and it may keep us from going home on the 19th. Decisions, decisions, decisions. LaVona and I can't decide where to eat most nights much less these more important decisions. He is always smiling and he loves his mobile. I am sad to say he likes his mobile more than he does us. He is really active and just moves his arms and kicks all day. We are so encouraged and pray that he will overcome the odds and make a full recovery. But, if he does have some challenges we still will have reached our goal of bringing him home and can't wait to wake up and him be there. Thanks to all that have continued to pray for our family. Brodie still has a bumpy road ahead and we are scared of what "could happen" but we feel that he is meant to be here and that we are capable of taking care of him. We will keep you updated on our decisions. Have a great week!

Brodie is Making Progress

I hope everyone had a great Thanksgiving. Ours was good but a little untraditional. We came up to the hospital and grabbed McDonalds on the way down. We did have family bring leftovers later that night to our house after we got home so we did have some turkey. It was just important for us to be with Brodie. We have so much to be thankful for this year and wanted to share it with him. Brodie has been making progress and trying new things. They have been doing CPAP trials where they take the breaths away and just give him continual pressure and he has handled that great. They also have tried him on a trach collar where he only gets oxygen. It looks like a little oxygen mask that goes over his trach and he did great on that as well. Our goal is for him to be able to spend the better part of the day on the trach collar and the vent at night. It just isn't as restricting and not as stressful for us. The past couple of days he has had a couple of episodes but other than that he handles anything they throw at him. He didn't have a good day yesterday but a bad day these days we can handle. We are still on target for the 19th but he still needs to make some more progress. He is on the home vent that we will use at home and the home health company is coming to the house tomorrow to assess what we need and check to make sure everything works. These have been busy days and we feel like we are just hanging by a thread. I think the adrenalin is wearing off and now we are just running on fumes. When we get home there will be new challenges but we won't have to drive so much every day.  Brodie took a little bit from a bottle today so maybe we can start to make some progress on that since breastfeeding is not going all that good.  He looks so good these days and today he smiled and played alot.  We have 20 days left and I just pray that he continues on the right track so that we can have him home for Christmas.  Thanks for all of the continued prayers.

It's a Date

Yesterday was one the best and worst days so far in the process.  When we got to the hospital we were told that we finally had a discharge date of December 19th.  I can't tell you how great this feels.  This could change but as long as we learn everything we need to and Brodie continues on the same track we will be out of here.  After almost four long months to know that we will bring him home and he will get to sleep in his room has made all of the long stressful days up here worth it.  We know we have a long road still ahead of us but it will be at home.  We will miss all of the wonderful people we have met and the comfort of others being there if something goes wrong but we are more than ready to be home.  There was one thing that happened yesterday that put a damper on our great news.  LaVona and I are trying to take a more active role in Brodie's care and become less dependent on the nurses.  Brodie was in a chair and he was having a hard time keeping his head up because he was tired so we decided to move him to his swing.  The nurse stepped out so we did it ourselves (big mistake).  LaVona moved him while I had the tubing and while we were moving him the water in the tube got dumped into his throat.  We could tell that he did not like this and his saturation started going down.  I went to get another nurse and when we got into the room his saturation was plummeting.  His saturation was in the forties and he was starting to turn blue.  She checked his trach and it was still in but his heart rate and saturation kept going down and his heart rate was 45 and his saturations were nearing zero.  She started to bag him and at this point he was blue with purple lips and was eventually out.  By this time we had a bunch of doctors and nurses working on him to bring him back.  They eventually brought him back and he was just white and very tired.  During this whole process that was only about 5 minutes all we could do is just stand there and watch as they tried to bring him back.  All I could think about is how far we have come and is this how it is going to end.  THANKS to all of the doctors and nurses. especially Wayna, for bring our boy back.  So many people up here love him and these things hit them as hard as they do us.   It is just hard when you feel like it is your fault that something bad is happening to your child.  We are just thankful that these things are happening while we are here so we can learn to handle them.  Brodie likes to keep eveyrbody on their toes and loves attention.  I can't wait to post on the 19th that we are going home.  Thanks so much for the prayers and have a great week.

Are We Ready For This????

Things have been going so great lately and everything is always positive and moving in the right direction.  Home seems to be in our near future and we are excited because that has always been the goal.  However, we are both terrified of the thought of being the primary caregivers.  We will have home nurses but have heard horror stories and need to be prepared to handle anything.   We are going to have to make sure we know it all and that we are calm when a stressful situation arises.   On Wednesday we had one of those stressful situations and we are so glad that it happened first while we were at the hospital.  We had been talking to our nurse and she said she had never had a baby decannulate (trach come out) on her and also that the tool used to insert it in needed to be readily available.  About 20 minutes after that conversation LaVona handed Brodie to me and when he got to my lap you could hear air leaking.  Then LaVona said,"It's out."  We both thought she meant that the tube got disconnected but we soon found out that he had decannulated.  The nurse then called for other nurses and then hit the code button.  The tie that holds the trach on and his trach collar were very difficult to get off but one of the other nurses was able to get it off while our nurse got the tool to put it back in.  While this is going on I am just sitting there watching my son gasp for each breath and wondering how this was going to turn out.  All of my personal space issues went out the window and I had nurses reaching over me and across me.  Our nurse was able to get it back in with no problem and he was fine after he got his oxygen back.. I know this sounds crazy but throughout this process that was the most scared I have been.  Thanks to Misty and all of the other nurses for staying calm and getting it back in.  We are now even more terrified to go home but I know we can do it.  Hopefully he can be weaned as much as possible and will go home on very little support.  Please pray that we can learn all we need to and be able to give him the best care possible.  Thanks to all of the support and we hope everyone has a great weekend.

Brodie is All Smiles

The doctors told us yesterday morning that we would hopefully be able to go home in 4 weeks.  We are very excited but are not going to get too excited in case it does not happen.  When we go home we will have to have home nursing care so that will take some time to get used to.  Yesterday LaVona tried to breastfeed him and he did pretty good.  He latched on for a few seconds so we are encourage that he might be able to do it.  Hopefully soon we will try a bottle and see how he does with that as well.  It is so great to be able to dress him everyday and get him out of the bed more often.  He sits on his boppy, lays in his swing and plays on the floor.  If he did not have a tube coming out of his neck you wouldn't have a clue that he has been through anything these last few months.  I added some pictures of Brodie smiling and then a picture of LaVona with the two boys.  Those pictures make all of the crazy nights staring at a monitor and wondering what was next all worth it.  I hope that these pictures put a smile on your face and thanks for all of the support.  We will keep you updated on the progress as we look towards home.  Hope everyone is having a great week.

Goodbye to The Lines

Words can't describe how wonderful Brodie is doing these days.  Today at 11 am he came off of the flolan completely and at around 8 tonight they finally took out his last picc line.  He no longer has any lines going into him and all he has is the trach attached to the ventilator.  Not only did he not have any issues getting off the flolan but they were also able to wean his oxygen down to 26% during the process.  A couple of nights ago he was actually down to 21% oxygen.  When doctors and nurses come by to check up on him they are simply amazed at his progress.  There is not one person in that building that thought that he would be even close to where he is by now.  The next step for us is to start getting things ready to come home.  We have to learn how to do everything with the trach, take a CPR class, learn the vent, get home healthcare set up and some other minor details.  To put it simply, we have to prove to them that we can take care of him on our own.  This will probably take 3-4 weeks and maybe longer but at least we are talking about going home.  Brodie also needs to start learning to eat.  This is very difficult for CDH kids but hopefully he can do it or he will have to have a tube put in his stomach.  Thank you so much for each and every prayer over the last 3 months.  I hope each of you know that you have a part in Brodie being here and we are forever thankful to you.  If you are reading this and don't believe in the power of prayer or that God can and will work miracles then I challenge you to visit Brodie and see what God has done.  He truly is a miracle and we are thankful for each minute that we get to spend with him.  We have been through so much but we wouldn't change it for the world.  We will take what we have learned with us forever and hope that you will too.  Thanks again!

A New Brodie

Brodie has been doing great the past couple of days.  The flolan wean has been going suprisingly good and he just looks great.  LaVona and I have been learning the trach care and even though it is very intimidating we have been able to do it.  It takes alot longer right now than it should but soon we will get the hang of it.  Brodie has been doing occupational and physical therapy and is doing more normal baby stuff.  He smiled a few times today and he just seems like he is so much happier now that he has the trach.  I am going to put up some pictures of Brodie with the trach as soon as they are downloaded so by the time most of you read this the pictures will be up.  Today and Tuesday he got in his seat/chair and would just lay back and enjoy it.  Right now he is laying in his bed propped up on his boppy and he looks so cute.  If you can't tell by this post we are so happy with his progress and to say that I thought we would ever reach this point would be a lie.  We never gave up but all of the signs were just not pointed in this direction.  I hope that this progress brings a smile to your face like it does ours because each of you were instrumental in getting us to this point.  If he continues to handle the flolan wean he should be off of it by Tuesday.  Hope everyone has a great Friday and hope you enjoy the new pictures.

Happy 3 Month Birthday

Today is Brodie's 3 month birthday and he has never looked better. Things have been going good and he has been tolerating his flolan wean. They have been going down by 2 every 12 hours and he is down to 20. We are a third of the way there and his doctor wants to see if we can maybe start to wean every eight hours. Hopefully he can get off of it by next week and then they can pull his last line. He has been on 36% oxygen for the last couple of days and he is sucking on a pacifier. They finally stopped paralyzing him yesterday and now he is starting to be more awake. The first trach change went good and it really doesn't seem to bother him. The nurse just got him a bouncy seat So hopefully he can get out of bed and play in that today. He looks so good and I feel like everything is moving in the right direction. Last week we were able to donate $6727 for CDH research to Texas Children's. They are working on some procedures where they will be able to help unborn children with CDH and hopefully families will not have to go through this process. The research and clinical trials are being done by Brodie's surgeon and the doctor that did the study we were involved in during the pregnancy. We are so very thankful for all of the generous donations and can't explain to you how great it felt to write that check knowing we were making a difference. It could not have been done without you and we will never be able to thank you enough. We still have $1000 that is on its way and we had around $200 come in after we donated so we it is all said and done we will probably have donated $8000. Thanks also for supporting us through the really tough times. Brodie is in now way out of the woods but we feel confident that in the next few months we will bring him home. Please continue to pray for his healing and for him to continue his progress. I will get back to updating this a little more often. I have been very tired lately and have just been lazy. A few of you have made comments that I have been slacking so I will step it up. Hope everyone is having a great week and we will keep you updated on the flolan wean.

Brodie Gets Off the Nitric

In my last post I said that the next few days were going to be unchanged. That was not what we experienced yesterday. When we got to the hospital our neonatal doctor and pulmonologist got into a rather heated debate about whether to wean his nitric or the flolan. After much discussion they decided to wean the nitric. They did it rather aggressively and were done by 6:30. He did not have any issues until they took him completely off. This was expected and he was actually back down to the same oxygen that he was on before they started to wean him. Today they will probably try to wean the flolan. This will be a lot scarier and it will make things a whole lot easier if we could get him off of this. We are hopeful that he no longer needs this but still worried about them weaning it. The next few days should be an adventure and we will probably revert back to monitor watching. Brodie has come so far and if you would have told me a month ago that we would be weaning the flolan today I would have told you that you were crazy. We would not be here without each of your prayers and support. Have a great day and we will keep you posted.

Successful Trach Surgery

Brodie's trach surgery went great. They said there were no issues and he looks good. It is so crazy to be able to see his entire face. He is very sedated and is paralyzed so that is a little difficult for us right now. I don't know how we were able to watch him lay there paralyzed for as long as he did. That just goes to show you that we can do anything if we are put in the situation. I really wasn't nervous about the surgery until just minutes before they came to get him. Then if hit me that he was going to have surgery and I wasn't sure what it would do to him. We watched a trach video yesterday which was slightly unsettling for me. When I saw the video I was ready to back out and not get the trach done. I sucked it up and realized that when it is your child these things don't seem as bad. When I first saw him the trach did not bother me at all. Let's see how I do when I have to change the tube out for the first time. The next week will be pretty much unchanged and he will stay paralyzed. Next week they will either wean the flolan or the nitric so the excitement will be back. Thanks for all the kind words and the prayers for his surgery.

Tomorrow is the day that he gets his trach.  I can't say that we are not nervous but we know that he will do great and come out of it just fine.  He has been through much worse and made it out of far deeper places.  Lately he has been doing great and when people come by to see him they are amazed that he has come so far.  We are so happy and proud of him and we know that he has a bright future and God has big plans for him.  I posted some new pictures of him.  He is wear his halloween clothes that his Nana got him and when we went to the Texans game on Sunday we put a Texans onsie on him so he would not feel left out.  I love the one of Bradie and Brodie.  Bradie loves his little brother so much and loves to rub his head and hold his hand.  LaVona and I are wearing down and just tired all the time.  I think now that he is doing better the adrenalin is wearing off and everything is catching up to us.  That is OK though because our little Brodie is better and that is all we care about.  The doctor just came in and told me,  "You are going to take him home".  Obviously that is not going to be for a long time but to go from thinking he would never come home to hearing that we will someday bring him home it feels so good.  Yesterday was the last day for the previous doctors and now he is being moved to the chronic lung disease team.  This means from here on out he will have the same doctors and we will not switch teams anymore.  Thanks so much for your giving, prayers and support.  We made our goal and I will give you the final totals tomorrow.  We have just been blown away by everyone's generosity and support.  I hope that someday each of you gets to meet Brodie and see what all of the prayers have done.   I talked to a friend the other day that I have not talked to for almost a year and he asked me how things have been for me.  When I was describing what we have been through it was crazy to think that we experienced all that I was saying.  You just take it one day at a time and don't even realize what is going on until later.  We feel blessed to have taken this journey with Brodie and are thankful that we are fortunate enough to be able to both do it together.  This has certainly been an interesting rollercoaster but we wouldn't change a minute of it.  We hope everyone has a great week and we will let you know how things go tomorrow. 

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.

We Are Tired

Today Brodie pretty much stayed the same. He was at 70% oxygen pretty much all day. They were not able to let him wake up more because they want him to stay around 60 consistently. The bad news for today is the he is swelling up more and more each day. He needs to start getting rid of the fluid ASAP. They are going to have a meeting of the minds tomorrow at 9 so we will let you know about what their plans are tomorrow. We are EXHAUSTED and are going to sleep. It has been a physically and emotionally draining last week. Hope everyone is having a great week.

Good Stable Day

Brodie had a good stable day today. His oxygen was in the 60's most of the day and his oxygen saturation was in the mid 90's as well. This sounds crazy but we actually saw our son move today. It seems like it has been forever since they let him wake up enough to move. He had his eyes open for a little while and would grab our finger. He wanted to lift his arms but we think his muscles are too weak right now. We are cautiously optimistic but encouraged by his recent progress. As I type this we are at the Astros game and Bradie is in heaven. He has been talking about going to a game for days now and he is having a great time. Not sure if he likes the game or the hot dogs and cotton candy but he sure enjoys himself. It is nice to get out with him because he is definitely being effected by our situation. If Brodie has a good day tomorrow the plan is to let him wake up even more. Hope everyone has a great evening and we look forward to giving you more good news. We can't thank everyone enough for all of the kind words, offers of help and your donations.

Progress

Today was a great day all around.  Brodie did good all day and although they are still concerned about the fluid around his lungs his numbers have been good.  They do not want to put a chest tube in to drain the fluid so they are hoping it will go away when they stop paralyzing him so much.  We decided that we would leave at 4 since he was doing a little better.  It was nice to be able to go pick up Bradie and we took him for a snowcone.  It was great hanging out with him and he kept us laughing all night.  To our amazement Brodie was on 66% oxygen this evening when we call up to the hospital and his saturation is still in the high 90's.  We have definitely been here before but after Sunday this feels like good progress.  Thanks so much for your prayers and support and we hope that Brodie has a great rest of the night and a good day tomorrow.

Prayers Answered

I am not sure what to say about today but that our prayers were answered.  We stayed up at the hospital and I slept for 4 1/2 hours in the Ronald McDonald house and LaVona stayed in his room all night catching a nap here and there.  He had a good night last night and we were terrified to go to rounds this morning.  We had a rough day yesterday and were ready for the doctors to have "the talk" with us.  This could not have been farther from the truth.  They were putting a plan together and definitely had not given up.  His echo was a little better and they were encouraged by that but on the x-ray you really couldn't see his left lung.  The doctors are not sure if it is collapsed or if there is just alot of fluid.  They decided that his breathing tube had an air leak and they needed to change it.  This was very scary and we were not prepared for that after our emotional day yesterday but they did it and there were no problems.  He has been doing good since then and they have even been able to wean his oxygen to 92%.  We are still a little baffled at the events of yesterday and are not sure where their communication broke down but the team certainly did not share the same view as the nurse practitioner.  All I can say is that our prayers have been answered and we are still working hard to bring Brodie home.  We know (and are reminded many times daily) that he is VERY sick but hope is what we hold onto and until it is taken away from us we will always hold it tight.  Thanks for all of the prayers and kind words.  Also, please don't forget to purchase a bracelet as the money will go to a great cause and maybe help families like ours in the future.  We sent out the first set of bracelets but we ran out so we had to order more.  The new ones will be here Friday so as soon as we get them we will send them out.  We are honored that not only do people want to help support our cause but they wear their bracelets proudly.  We got a picture from LaVona's coworkers that showed a group of hands all wearing their Brodie bracelets.  We are amazed at the support and love hearing the stories of how Brodie has changed lives.  We can make our goal and can't wait to donate money for CDH research. 

We Are Not Giving Up

I have struggled on whether to post the recent news or not but when I first started this blog I promised myself that I would be honest and free with my feelings no matter how hard it was. In "real" life I usually keep my feelings in and only let a select few in but so many of you have shown so much love for Brodie that I feel it is my duty to let you in our lives fully and wholeheartedly. Today started like any other day. We just went to church and were feeling so positive and ready to see our little boy. We came up to the hospital and Brodie was not doing as well as we would have liked but he wasn't doing that bad either. The nurse practioner came into our room and was telling us how Brodie was doing and then it got uncomfortable. She started to tell us that he responds to a medication at first and then as he gets used to it the medications just don't work. She let us know that we needed to start thinking of what we would like to do. She said that he is just not responding and although they can keep him alive that this is no quality of life. He has been on 100% oxygen for quite a while and he will just develop more lung disease on top of his laundry list of issues. They have been keeping him paralyzed and this keeps his brain from growing which is not good coupled with the stroke. We are not going to give up but we do have to start talking about his future. As I sit here right now I don't think either of us will ever be able to give up but we also will not let our son suffer. Brodie needs your prayers more than ever but I must say that myself, LaVona and Bradie need them as well. We have been able to stay pretty strong through this whole process but this has hit us hard. On top of all this Bradie has started telling us that he doesn't want us to visit his brother anymore. Just keep us all in your prayers. We both talked to Brodie tonight and let him know that we are at peace with whatever he decides to do. We certainly want him home with us but if he is ready to go then we are here for him as his parents. Just know that at times like this that we have held on to all of the kind words and gracious acts by each and every one of you. We would also like to thank the nurses that make a difficult situation a little better with just a few kind words. I will leave you with one last thing: LaVona and I will be ok no matter how this turns out. Our love for each other and faith in God can get us through anything. Thanks and have a good night.

Turn Around Brodie, You Are Going The Wrong Way

Today has not been the best day for Brodie. The nurse said that she put him on his right side and he did not like it. She also said that he didn't respond well to some of the doctors coming in and talking around him. We were just feeling so encouraged by all of his good progress and now he is back to his old tricks. He is all the way back up to 100% oxygen and we have lost all of the progress that we had made during the week. Hopefully this is just temporary and he will turn it back around. They did a chest X-ray and it looked the same as the last one so they are unsure why he is requiring so much oxygen. We will let you know when things change and hopefully he will be down on his oxygen later. Hope everyone enjoys there Saturday and somebody do something fun for us. We did get to get out today and take Bradie to the doctor. He has a cold and an ear infection so he won't be able to visit his brother until Monday.

Good Test Results Today

Overall today has been a good day. His oxygen has gone up and down but at one point he was at 54% oxygen. Right now his oxygen is hanging out in the 70's but we don't consider that a huge step back. The good news is that the EEG showed no evidence of seizures but it did show some abnormal activity due to the stroke which they said is common. We also got the results of the BNP and it went down significantly. This is good because it means that the flolan could be working and that we are making progress on his pulmonary hypertension. We wish that he would stabilize and continue decreasing his oxygen but we are definitely in a much better place than we were a week ago. We believe that our prayers are being answered and we just pray that he continues to get better. We hope that everyone has a great weekend and thanks again for all that everyone is doing. We hope to bring more good news to you soon.

Brodie is Still Doing Good

Brodie had a good day today but did get violated in the process. Right now he is on 60% oxygen and is handling it well. He had an EEG early this morning and then had to get another picc line. The EEG went well but we have not received the results yet. He handled both procedures with no problems. The picc line took a few hours and we couldn't be in the room so that was not too much fun. We are just so glad that he is tolerating things better and recovers MUCH quicker than he used to. We noticed that he is starting to grow his hair back and it is still dark. Tomorrow they will do a test and it might give us an idea if the flolan is working but it seems like it may be helping. We will let you know as soon as we get the results of the EEG and the BNP. Thanks for everything and we hope you have a great night.

GREAT DAY!!

Today was a great day for Brodie which obviously made it great for us. I know it probably is not the first but it seems like the first day that has been free from any bad or negative news. I even made the doctor say to me that it was a good day. Could it be that the Flolan is working? I hope so but we may not find out for a few days. The biggest change between yesterday and today is that when he got agitated his numbers went down but they went back up quickly (without bagging). They were able to wean his oxygen all the way down to 62% and he has really tolerated it. I think I am finally becoming an optimist because I feel like he is going to stay on this track and keep moving in the right direction. As bad as yesterday was there was one bright spot for us. We got an email from a couple that had a baby that was born at 32 weeks with CDH. Baby Kinley soon went to Heaven but to hear from this family and see how they are coping with their loss has given us hope and peace with whatever happens to Brodie. They follow the blog which I imagine is very difficult but they are big Brodie supporters. They have also decided to match the bracelet donations up to $1000. This made us so happy and we just feel that together we can all make a huge difference for CDH. Thanks again to this family for their generosity and please pray for them and their family. We also thank all of you that have donated and if you would still like to please click on the donate button or email us. We are honored to be Brodie's parents and see what an impact he is making in this world. Have a great night and I know that tomorrow Will be just as good.

What a Day! (Sigh)

Today was one of the most physically and emotionally draining days we have had up to this point.  It probably wasn't but right now it really feels like it.  Last night he did great and he was down to 68% oxygen but by the time we got in he was on 100% oxygen.  That is pretty much how the entire day went.  The doctors had to bag him 3 or 4 times today.  They have probably done this to him about 15 times but I know that will never get easy to watch.  His oxygen saturation went lower than it has ever gone before and I was scared they were never going to get it back up.  While they were bagging him respiratory did a deep suction about 6 or 7 times and got a ton of mucous out of his mouth and tube.  This really seemed to help  him.  Today he looked pretty good but there were a couple of things today that are hard for a parent to see.  The hardest is that he has a slight leak in his tube so now it makes a noise when he breathes and when he has fluid in his mouth it is worse.  This is just something that we will have to get used to.  The other thing is that towards the end of the night his eyes were open but they were not moving and he was just not with us.  They have him paralyzed and heavily sedated so he is not consciously with us right now.  Just another day in the new life of our family.  We just called and he is doing better tonight so hopefully tomorrow will be a good day.  Thanks for your support and hope everyone has a wonderful night!!!!

Morning Frustration

Last night we left the hospital around 8 and Brodie was doing good.  We called a few times through the night and he was doing even better.  His oxygen got down to 68% and we thought that maybe this medicine was helping things a little.  I called this morning around 6 to see how he was doing and they said he was doing great.  By the time we got here his oxygen saturation was in the 70's so they eventually had to turn his oxygen back up to 100%.  This was upsetting but seems to be the new norm.  His oxygen saturation got back up to 95% but during rounds I noticed it starting to go down pretty fast.  When it got down to 91 I nudged LaVona and she went in to his room.  A couple of minutes later he was down into the mid 50's and they began to bag him.  This was scary for us because he had not been that low in a while.  They eventually got him back to where he needed to be but as I type this they keep messing with him.  At this point I just want to scream.  This is so frustrating but I know that this is how it goes.  They are still trying to figure out what the haze in his right lung is and also he has fluid aroung the left lung.  They are giving him blood today and hopefully will just leave him alone.  He does not do well with stimulation but he has been stimulated all morning.  Hopefully things will turn around because I can tell that we are both reaching that point where we are getting frustrated.  Brodie just got a new neighbor and this baby had a set of lungs.  What we wouldn't do to hear Brodie cry like that.  Thanks to all that continue to donate for CDH research.  I never would have imagined that we would have received so much support.  Everyone continues to amaze us with their support.  We never would have dreamed that Brodie could have touched this many lives.  Brodie's blog has been seen by many people in 10 different countries.  Hope everyone has a great day!

Echo Slightly Better but Nit Good Enough

We just got through talking to our doctor and the pulmonary team. His echo looked better but just a little bit better. It was not enough for them to feel comfortable with staying the course. They have made the decision to add flolan to his abundance of meds. Although this medication could help it is not a medication that we wanted him on. It has to have a dedicated arterial line and must go continuously into his body. If a line or pump stops working they have 3-6 minutes to get it changed out or it will cause big problems. When he goes home he will have it as well and will have to carry a pump in a backpack attched to an arterial line. That is not the ideal scenario but as long as he is home we will deal with whatever we need to. They are also starting him on antibiotics because there was a haze on his right lung in the X-ray. When we were talking to the pulmonary team they said that they hope the flolan works but the blood vessels to the lungs may just not have formed well enough or there may not be enough of them. This news really hit the heart. We knew exactly what they were saying to us and it was difficult to hear. He is a fighter and has so many people on his side. Let's just pray that the flolan works. Also, while he is on flolan they have to keep a close eye on his blood pressure and heart rate. Brodie obviously feels that we aren't stressed enough so he is keeping us on our toes. Please pray for Brodie. He needs it now more than ever. With all that said he has had a fairly stable day. He has been on high oxygen but is still doing ok. Have a great rest of the day and THANKS!!!!

Still Sensitive

For the past few days Brodie has been holding steady and making progress. Today he had a little bit of a setback. Because of the sores on his head they have to reposition him from time to time. Just before we went to grab something to eat they changed him from his left to his right side. He got very agitated and his oxygen saturation went down into the low 80's. He stayed this way for a good while so they eventually had to go back up a little on the pressures and took his oxygen up to 100%. He has since done a little better and they have been able to wean his oxygen down to 94%. Tomorrow is a big day for Brodie. His echo needs to show some improvement so that the doctors will keep him on the same path. We feel like if he has not made progress that they will put him on a medicine that for some reason we feel uneasy about him going on. We will fight that fight if it comes but right now we just pray that his echo will show improvement. Hopefully they will do it in the morning and we can have the results by around 5. Please say a special prayer for Brodie tonight. This will be one of those nervous nights and a stressful day tomorrow. Thanks so much for all of the support and prayers. Thanks also to those who have purchased bracelets or just donated money. Hope everyone had a great weekend.

Still Holding Strong on the Ventialtor

Today Brodie is still holding strong on the ventilator.  They got his oxygen down to 78% and then they decided to put him on another type of conventional ventilator.  This one is just a little fancier and will assist him with each breath that he breathes so that he doesn't overwork himself.  They upped his dose of the medication for his pulmonary hypertension and will do an echo on him Monday.  This will be a huge day for Brodie.  We can't tell you how important it is that his heart and blood vessels look better on Monday.  Until then we will enjoy how great he is doing and assume that these things are being corrected.  The last two blood gases have been good and they have lowered some of the pressures on the ventilator and his oxygen saturation is at 100%.  Hope everyone is having a great weekend and again we can't thank you enough for how generous you have been.  Also, thanks for your prayers and support and please pray for great results on Monday.  

Scary but Good Day

Last night we stayed in the Ronald McDonald house and finally got to sleep a little after 3. Each time that we felt comfortable about leaving he would have an episode but he finally stabilized around 2. This morning is when the fun began. We got up and went to rounds and soon after the director of neonatology came over to join in the conversation. He proceeded to emphatically suggest that he thought that they should switch to the conventional ventilator and eventually decided that they would give it a try. Although we were very scared we were both confident in his ability. We have alot of respect for Dr. Welty and trust him with our little boy. They started to bag him and he responded well so the doctor made the decision to put him on the ventilator. He has done well on the ventilator all day and we felt confident enough to come home and sleep in our own bed. We will have the dark cloud of pulmonary hypertension hanging over us for quite some time but we will take this victory today. LaVona and I would like to thanks each of you that donated and bought bracelets today. We are blessed to have such generous and loving people in our life. We have received donations from family, friends and people we have never met before. We may never meet some of you in person to thank you personally but just know that we will forever thankful for what you have done. Not only has Brodie gone through more than I have he has also touched so many lives in just a short time. I think through Brodie we can do many great things and help to change the course of CDH. If you would like to buy a bracelet please click on the donate button, post on the blog or email one of us. Thanks again and hope that everyone has a great weekend.

Rough Evening

Today was a fairly uneventful day but then Brodie decided that he would make the evening eventful.  He looked at both LaVona and I and thought that maybe we were sleeping a little too much so he decided to make sure we didn't sleep tonight.  Just before shift change his heart rate dove down to the high 70's and he turned as white as a ghost.  We then started getting visits from respiratory, doctors and a few nurses.   These events just left myself and LaVona both speechless and helpless just watching and wondering what was going on.  They eventually got him turned around and then they came in to do the x-ray and sent him into another tailspin.  They increased his oxygen to 100% and his saturation hovered around 80%.  They increased a setting on the oscillator and stopped a medication that they had just started before this happened.  He then started to slowly go back up until he was back up to an oxygen saturation of 95%.  This made us feel better but was short-lived since they had to change his diaper and now he is back down to a saturation of 80%.  We were planning to leave but I guess we will sit tight and hope he bounces back soon.  LaVona wanted me to share with everyone the question that I asked her so that it would put a perspective on what we are going through.  I asked her if this was just another downturn or if he was slipping away from us.  Although difficult these are things that we are feeling and issues that we must discuss.  We know Brodie has much more fight left in him but we are having to face the reality that we have a very sick boy.  Please don't let this bring you down because it sure doesn't bring us down.  We know we have to stick together whether it is just the two of us in this hospital room or the hundreds of people that cheer him on every day.  Let's continue to pray for his healing and hope that he has an amazing day tomorrow.  We are also excited that the bracelets that we ordered to support Brodie have come in.  Below is a picture of what they look like.  On one side it has Brodie Dick 8-8-11 and the other it says I Support CDH Babies.  We are selling these for $5 and since LaVona and I are paying for them the entire $5 will go to CDH research.  We will also match the $5 for each bracelet purchase up to $2500.  We would like to raise a total of $5000 for CDH research.  Many of you have asked what you could do to help and this is what we would like.  Our prayer is that someday they will know what causes this and what they can do to prevent other babies and families from going through what our family has gone through.  We thank you in advance for your support and I know that we can make this happen. 

Echo Results Not Good

Today has been a relatively quiet day with not too much ups and downs.  He is back up to 90% oxygen but has been fairly stable most of the day.  Although he is not where we would like him to be at least he has not had a huge setback.  The echo results came back and his pulmonary hypertension has gotten worse.  They said that the right side of his heart has alot of pressure and the blood is not flowing to the lungs like it should.  This was a big blow to us because he seemed to be making progress on that and now to find out that we are going in the opposite direction it is scary.  They are going to start him on another medicine to try to open up the blood vessels and relieve the pressure.  He is already on a high dose of a medicine to help that but it is apparently not working like they would want.  As you can see from the pictures I posted yesterday he is swollen quite a bit and just doesn't look like himself.  We know that once he gets better that all of the swelling will go away but it is just hard to see.  Please continue to pray for Brodie and hopefully they can get this issue under control.  His lungs look good and hopefully one the pulmonary hypertension goes away he will be able to make some good progress. 

We Can't Take it Anymore

Yesterday was the best day that we have had in a long time.  His oxygen saturation was at 100% most of the day and they were able to wean the oxygen on the oscillator to 45%.  We were on cloud 9 and it was so great to see some real progress.  They were getting ready to come down on the pressures on the oscillator if he continued to stay the same.  We came back from a break at 11:00 pm last night and he was back up to 100% oxygen on the oscillator and they could not get his oxygen saturation into the 90's.  He continued the downward trend and they had to go back up on the oscillator pressures and he just didn't have a good night after that.  We called at both 4 and 6 this morning and he still wasn't doing that good.  When we got here he was doing a little better but he just has not recovered.  They did not do the echo yesterday but finally came today and just finished about 20 mins ago.  He is now acidotic which is not good and they can't figure out why.  On top of all that they rolled him over a little bit and he has some sores (skin breakdowns) on his head.  The wound team has taken a look at it but we are not sure when we will hear the results from that.  Hopefully we will get those results back soon along with the echo.  We are so frustrated and we know there are going to be ups and downs but it is just getting a little more difficult.  I will try to post some current pictures today.  One bright note is that we were able to meet two cdh survivor babies today.  This morning we met Brooklyn which is the daughter of Lindsey that we have talked about in previous posts and also we met Cade who is 15 months and had most of the same doctors as Brodie.  They were sitting next to us in the food court and I kept hearing them say Dr. O (Brodie's surgeon), MRI , and stroke.  We eventually asked them and found out that Cade was a cdh survivor and it was great to hear his story.  I can't tell you how great it makes us feel to see these two beautiful babies and know that they went through the same thing as Brodie.  We know that each cdh baby is different but it gives us hope to see these two miracle babies.  It is amazing how God puts people in your path just at the exact time that you need them.  Sometimes you can feel like you are on an island all by yourself and that nobody knows what you are going through.  To not only see the babies but to also talk to the moms and see that they went through some of the same things it is comforting.  We will keep you updated and ar thankful for all of the prayers.

Bad Night, Great Morning

Brodie did not have a good night last night. He went down quite a bite on his oxygen saturation and they had to increase his oxygen to 100%. Even when they did that his oxygen saturation was still not where it needs to be. The great news is that he has done amazing this morning. They have been able to wean his oxygen all the way down to 54% and his oxygen saturation is 100%. This means that soon they will probably wean his oxygen again and maybe we can get his oxygen below the magic 50%. If he can stay below the 50% mark for a little while they will start to go down on the oscillator pressures. We are so proud of him and how he has done this morning. I just pray that when they come do the echo that he does not have any issues. He is not tolerating his feeds and they are looking at a few different options to bypass his stomach to get him milk. We know that he is going to have these side issues but as long as we can get his breathing and oxygen under control these other issues will hopefully fall right into place. I am so glad that he doing better because the last few days have been difficult. We are exhausted and nothing seems to help. If we did not have help from the grandparents it would be impossible. Thanks to all of the grandparents for your help. Also, thanks to everyone else for your support and prayers. It gives us that little extra push that we need to make through each day.

We Need Some Progress

Brodie has been up to his old tricks.  We came in this morning and he was on 80% oxygen and they said that he had an episode last night at 2 in the morning.  During rounds this morning they said that they wanted to get his oxygen below 50% and then start going down on the pressures of the oscillator.  We hope that he can get down on his oxygen because he needs to start showing some progress. He has come a long way from his darkest hours but he needs to get off of the high oxygen levels and presuures.  Just as I am typing this post he has had another episode but the good news is that he actually recovered a little quicker from this one.  All we want is to get him onto the ventilator so that we can hold him again.  He is doing well with his feeds and they are going to do another echo in the morning.  Hopefully it will show that he has made some progress on his pulmonary hypertension.  We had a great time yesterday at the game and it was good to get away for a couple of hours.  Bradie bought Brodie a little Texans bear and was so excited to give it to him.  He told all the nurses that he got it for him and told them that he was yelling "Go Texans".  Above is a picture that a lady took of him at the game and emailed to us this morning.  He loved his little flag that they gave out and waved it most of the game.  We need prayers for a little progress and for his echo to look good tomorrow.  Thanks for all your continued support and sorry that we can't get back with each of you but just know that each encouraging word or story help us make it through the days.

Brodie had an ok night and he is having a good morning. Last night they had to go back up on his oxygen to 70% but this morning he has come back down to 56%. There have really not been too many other changes. He is handling his feeds that they started and the nurse said that there was not alot of residual left in his stomach. Overall it seems like things are at a bit of a standstill. It seems like during the day they are able to wean his oxygen and then at night he goes back up. Hopefully soon he will snap out of this trend. Today is the first day since Brodie has been born that we are going to venture out for a few hours of fun. We are going to take Bradie to the Texans game and he is very excited. He has been talking about this for weeks. Luckily the stadium is just a few miles from the hospital so we can come back after the game. It will be good for us to have a little fun but also going to be very difficult because we will miss him and feel guilty for having fun while he just lays in his hospital bed. Hope everyone has a great Sunday and thanks for all of the kind words and prayers.

Brodie had a good night last night and a good morning. He is almost back down to the oxygen level that he was at before the last setback Thursday night. I am flying solo at the hospital for a little bit while LaVona goes and gets the full hair treatment. I know that this will be good for her and she needs a little time away. I am sitting in the dungeon that is Brodie's hospital room. Since his last setback they have gone back to the lights off and quiet room policy. The layout of the NICU has rows of beds in an open room (which I call general population) and the rooms on the outer edges (I refer to them as solitary confinement or the suites depending on my mood). As I look out into general population I am jealous of the light and open air that they get to enjoy. The sickest babies get the suites so we live for the day we get to move out of here. I now understand why solitary confinement makes people go crazy. Hopefully today we can make some good progress on his oxygen. They have decreased his blood pressure medicine, his sedation medicine and are not giving his paralyzing medicine at the first sign of the slightest movement. Today they are also putting him back on feeds. He will be on a continous drip of breast milk. This is big step in the right direction buy also scares us because he had his biggest setback after they started his feeds the first time. We welcome every change in the right direction but we also are terrified because we all know at this point how sensitive he is and how things can change in a second. Make it a good Saturday and I hope that everyone has the same beautiful weather that we are experiencing. Prayers go out to all the people that are effected by all of the fires.

2 Steps Forward 1 Step Back

Brodie had a tough night last night. We called late last night and they said that at midnight they had to increase his oxygen back up to 80%. Then we came in this morning and the lights were off and he was at 100% oxygen. The good news is that they did not go up on any other settings on the oscillator. We are at least taking 2 steps forward and then one step back. Before it seemed like we were taking one step forward and two back. They have started to wean the oxygen again so at least that is encouraging news. We are very perplexed at what happens here at night and can't quite seem to figure out why he does better during the day and not so good at night. We need to get our sleep but if he continues this we will have to start pitching tent in his room. He looks a little better today because the swelling has gone more to the back so he look slightly more like himself. Hopefully he will have a good Friday and we hope you do as well. LaVona is holding up pretty good but the process is starting to break her down. She is just feeling helpless and wants to help Brodie but can't. I give everyone permission to blow her email and phone up with encouraging words. She needs a pick me up and I just keep saying the same things over and over so it has become rather ineffective. Thanks for your prayers and support. Even after a few decent days this is still emotionally and physically draining.

Great News, No Seizures!

The results came back for the EEG and there were NO SEIZURES.  This was great news to us and Brodie is having a great day.  They have gone down a little on the pressure of the oscillator and will go down one more today.  After they go down on the pressure they will try to go down on the oxygen.  This is the first time in a LONG time that everyone seemed encouraged with his status.  Usually they will say that he is doing good but.....  These are much happier days but we must be cautious because anything could trigger his pulmonary hypertension and we could go back to where we were.  The plan is to go down as slow as possible and just see how he does along the way.  He is still retaining alot of fluid and his head looks pretty bad.  We are also anxiously awaiting to see what neurology has to say.  Overall he is having an amazing birthday!

Happy Birthday Brodie

Today is Brodie's 1 month birthday. It is hard to believe that he has already been here for an entire month. This is a big day because there have been some days along the way that we didn't think that he would ever make it a month. Thanks to all of everyone's prayers we have managed to not only reach 1 month but at least be moving in the right direction. He is an amazing little boy and it tears our hearts apart to see him just lying there with a tube in his mouth and us not being able to hold him. I feel like things will get even better soon and we will be able to hold him again. We have still not received the results of the EEG and they have not rounded on him yet. We will post the results when we get them. Overall he has stayed the same from last night to this morning. Hope everyone is have a great day.

Good Numbers but it is Bittersweet

Today was a good day for Brodie's numbers.  Most of today he did really well with the exception of a couple of brief moments.  The head ultrasound came back and there were no problems other than they didn't see an increase in the brain size.  They also ended up doing the EEG because he started to have jerking movements just like when he was having seizures.  We did not get the results back on that but probably will tomorrow.  We just pray that there are no other issues with his brain and that those movements are not seizures.  The team got together and decided to keep him on the oscillator and not put him back on the ventilator.  They feel like we are making progress at this point and do not want to take any chances.  The nurse stopped giving him the paralyzing medication and the team decided to keep giving it to him when he starts to wake up.  Brodie is at 60% oxygen and has stayed there most of the day and they have decreased the other settings on the oscillator as well.  Tomorrow is going to be a tough day if anything comes back abnormal on the EEG.  Hope everyone had a wonderful day and has an even better tomorrow!

Keep it up Brodie

Brodie is still making progress.  He had a little bit of a setback this morning and they had to turn his oxygen up to 88% but he has since come back down to 60%.  This is great news because we never would have thought that he would be able to tolerate going down on his oxygen that fast.  He is getting the paralyzing medicine a little less often now so that is encouraging also.  He had his head ultrasound this morning and we have not received the results but they are going to wait on his EEG until tomorrow so that they don't mess with him too much today.  The entire team of doctors has a meeting today at 2:00 to discuss our little guy.  Some people think that they should switch him to the conventional ventilator and some think that they should keep him on the oscillator.  They will put their heads together and come up with a plan for what they want to do moving forward.  We are so happy that things are moving in the right direction and are so proud of the fight that Brodie has put up so far.  Thanks for all of the prayers and continue to pray for him.  As I type this his oxygen saturation went down to 85% from 95%.  He sure keeps us on our toes and stresses us out. 

Stay Strong Brodie

Today was the best day in quite some time for our little fighter. He has done really well and his numbers have responded great to each change that they made. Believe it or not the oxygen on the oscillator is set at 71%. It has not been down that low in over a week. They have come down on a couple of other settings as well. Although we are very excited by this news we have been here before and been crushed by a setback. We will think positive and hope the he keeps moving in the right direction. We see some twitching and jerking that looks similar to seizures so we just pray that they are not back. He is getting a head ultrasound and EEG sound please pray that both give us great results. WE ARE SO PROUD OF YOU BRODIE. He has fought so hard and it is an honor to be his father. He has been put through more in his first month than I have in 34 years. Stay strong buddy and we can't wait to bring you home.

Things are a Little Better

Brodie had a good Labor Day. They didn't make any significant changes. He is now currently on 86% oxygen on the oscillator and this morning they have gone down a little bit on some of the other settings. Although we are encouraged by this news we are still scared because he is so close to maximum support that there is not too much room for a setback. We were able to leave the hospital at 5 and go spend time with Bradie. He just had us laughing all night and it was great to spend some good quality time with him. It makes you realize how much joy kids bring to your life and makes coming up here a little easier. We got some sleep as well so we have a little more energy than last week for sure. A girl just stopped me in the hall and told me that she was praying for us and Brodie and that we are such a kind family. I have learned through this process that it takes just a couple of seconds to say things like that and you don't understand how it helps someone. The number one question we get is, "How are you doing it"? The truthful answer is that we are able to make it through all of this because of all of you and all of the other amazing people that we come into contact with on a daily basis. It would be easy to see the bad in the world right now but we are surrounded by so much good that it is just impossible to do anything but feel blessed in our situation. Sure it is not easy, but when you see the lives that Brodie has touched and the way people have touched ours we would have to say that life is good. Please pray for all of the people being effected by the fires right now. Thanks again for all of the support and prayers. We are moving in the right direction but we know we still have a very rocky road ahead of us.

Finally got some Sleep

Happy Labor Day to everyone. Brodie did well through the night and into the morning. They were able to wean his oxygen down to it's current level of 88%. His oxygen saturation has been around 92-94 so he seems to be tolerating slight changes. This is progress but we have a long long way to go and they are going to do it slowly. The unsettling part of his current condition is that he requires very heavy sedation to get him to this point. When he starts to wake up his numbers go down and they have to give him a paralyzing medication to stop him from breathing over the oscillator and moving too much. Also, the thing that hurts our hearts is that he is retaining fluid and most of it is collecting on his sides and head. He doesn't even look like himself anymore. He is also losing his hair. We knew before he was born that he would lose his hair eventually but we though it would be 30 years from now. Overall, even though he is still very sick and has lots of hurdles to go over we are pleased with his progress. We are just dying to hold him again so we are hoping that within the next couple of weeks he can get better so that we an hold him again. We were finally able to get a normal nights sleep so were are feeling better but definitely not refreshed. Hope everyone has a great Labor Day and thanks for your prayers for Brodie and support for us.

Don't Touch a Thing

Last night after his big episode they were able to get Brodie stable and keep his stats up. We were able to go home last night and we arrived around 12:15 We got everything done we needed to do and called about Brodie around 12:45. They said his numbers were good but the co2 has actually gotten too low. We have been fighting for weeks to get it low and now it is too low. They said they would make a change on the ventilator and would do another blood gas. The nurse said to call around two and they would have the numbers. We did not get to talk to them until 2:30 but when we finally got in touch they said that it was better. He did well through the night and this morning. They were able to wean his oxygen to 97% but there are now instructions to just leave him alone. Don't try to wean him or anything else that may cause him agitation. This is great news to us. Hopefully he will stay stable and maybe we can get home early and get in bed before 11 so webcan get lots of rest. Overall we are pleased with his progress but they keep reiterating that he is still very sick. Have a great rest of your day and Happy Labor Day to everyone.

Get Me Off of this Rollercoaster

Today started good and we thought it was going to be a laid back day. We couldn't have been more wrong. LaVona went and picked up Bradie and then we went to lunch. We got back from lunch and walked in to chaos. All we could see when we rounded the corner was a room full of doctors over Brodie. We looked at his oxygen saturation on the monitor and it was around 78%. The doctors were working on him and not telling us what was going on. They then started to bag (hand ventilate) him so we got very concerned. We soon found out that they were trying to get some mucous out. They ended up getting quite a bit from his mouth but not the tube. His numbers got better but then they went down some again. They changed a setting on the oscillator and we went to get Bradie squared away. About thirty minutes later we were coming back to his room and we could see from far away that he was in the 90's. When we got into the room we noticed that he was 95 again. He has stayed that way for the past 20 minutes we have been here so hopefully he will stay on this track. We can't quite understand how things can change so quick. I am sure that the nurses think that we are nuts at this point but you just don't understand how emotionally draining each dip is and what it takes out of us. You just know that there are going to be dips but each one blindsides you just as much as the first. Please pray for Brodie and our sanity. I should probably swing by the heart doctor sometime this week to make sure my ticker is still good. In the last almost four weeks it has felt much excitement, pain, love and been broken. I am not sure how much it can take but judging by the past it will need to endure much more to make it through. Hope everyone is having a great weekend.