Bronchoscopy Went Well

The bronchoscopy went well today and the ENT said that the airway and vocal chords look great.  There was some granulated tissue from suctioning that he removed but other than that it went as expected.  They told us that they wanted to move forward with taking out the trach.  They admitted him and just let him rest today.  It has been a little stressful because after he woke up from the procedure his saturation was staying between 90-93.  We can't seem to figure out why he isn't doing as well as normal.  It has been a long time since we just sat and stared at a monitor praying that the number will go up.  They wanted him to be 92 or better to try and cap him and in true Brodie fashion, about an hour and a half before they were supposed to do it he suddenly went up and stayed at 93 or 94.  They decided to cap him and when they did he stayed at 94.  I guess we figured he would go down and kept waiting for it to, but he just stayed the same.  He has been doing great since and the ENT said he will come by at 6 in the morning and see how he did.  If he does well then they will take it out and monitor him all day.  As I type this I keep hearing little noises coming from his bed and realized that it was Brodie.  He can now make noise since capping the trach is like not having a trach at all.  We will see how tonight goes and let everyone know how things are progressing. 

Could Brodie be Trach Free Soon?

As I look back on the last 13 months I can definitely see that we have had some difficult times but now I can honestly say that we have made it through the tough times and are happier than ever.  We are blessed to have Brodie and are still thankful every day that things worked out the way they did.  Here is an update on what has been going on with us.  We took the boys out to Disneland all of last week and had a great time.  It was great to get away with just the four of us.  We had such a wonderful time and for that week life just seemed "normal".  Brodie did great on the plane and he even rode all the rides that he was tall enough to ride.  He not only went to Disneyland but he also went to the beach, Sea World, and his first baseball game.  He laughed and smiled most of the trip and only cried we he got near the Disney characters.  Who would have thought that after all he went through that he would have been taking a trip at 13 months.  We have been waiting to hear from the doctors about what we are going to about the trach.  We finally got the call yesterday that if there are no obstructions found during the bronchoscopy on Monday that they will take out the trach, monitor him overnight and send him home Tuesday trach free.  I can't tell you how happy that this makes us.  It will not only allow us to get back to a more normal life but we think it will definitely help him out developmentally.  If it comes out it is going to be crazy to be able to see his whole neck and always hear him talk, laugh and cry.  He has been really progressing lately and the therapists said that they think he will be walking by Christmas.  He is showing more of his personality every day and keeps us laughing all the time.  We will update you next week on how thing go on Monday and Tuesday.  Thanks so much for all of the prayers and we know that without all of you that he never would have made it this far. 

Brodie is ONE!!!!

I am sorry that I have not posted since Brodie's birthday.  Brodie has been amazing us daily and we are so thankful that we made it to a year.  We had such a great party and thanks to all of you that came to support Brodie and our family.  Once Brodie came off the ventilator and oxygen he never looked back.  For the past two months he hasn't made much progress but the last couple of weeks he decided it was time to get on the move.  He now goes from sitting to his stomach, from lying down to sitting and he has even started to do the military crawl.  We are so happy that he is on the move and can't wait to see what he has in store for the next couple of months.  If you were to see him you would not know that he had a rough start to his life and that he has had a stroke.  Once he gets the trach out he will look like a normal little boy.  We have a bronchoscopy scheduled for September 17th and if everything looks good they will possibly take the trach out.  We feel that he is ready and would have no problems if they took it out.  It sure would be nice to get back to more of a normal life.  If he does not get it out then we will have to wait until  March or April.  If it does not come out now that will be OK too because we never dreamed that he would be where he is right now.  We are constantly reminded of what a miracle we have and feel so blessed to have him in our life.  I can't imagine what our life would have been like if we would have lost him.  He brings so much happiness and joy to our lives and although it has been a tough year we can honestly say that it has been the best.  There are so many families of CDH babies that don't get to bring their babies home so we never want to forget how blessed we are.   Below I will post a link to the pictures from Brodie's birthday party.  I know there are alot but I hope that if you were not able to make it that you will enjoy the pictures.  I will let everyone know what we find out about the trach and again we thank each of you for everything you have done for us this past year.

 http://www.claytonwallace.com/mp_client/pictures.asp?eventid=0&groupid=225

The password is Todd

If you would like one of the pictures let us know.  We will have a cd and be able to print them out.

Brodie 10 Months and No More Vent

Brodie has reached the 10 month milestone and is improving daily.  What this means for our family is that we are finally getting back to a more normal life.  The picture above is Brodie at the Jimmy Buffet concert.  We are fully aware that this is probably not the best concert for his first concert but he had a great time.  I can't believe that back in September we were not sure that we would ever bring him home and then eight months later I would have him sitting between my legs rocking back and forth to Jimmy Buffett.  We are amazed daily at his progress and are so blessed to have such a special boy in our lives.  I can't say that it has been easy but the rewards far outweigh the hard times.  As of this morning Brodie is officially off the ventilator.  We went to the Pulmonolgist a couple of weeks ago and he was so amazed at Brodie's progress that he decided to be more aggressive with the vent wean.  He came up with a 12 day plan to get him off the vent and Brodie breezed right through.  We go in for a blood gas in a few days and hopefully that will look great as well.  He told us if he was off the vent and did not need the trach for ventilation then there was no need for the trach anymore.  He said that he could possibly get the trach out this summer.  Although this is great news we are thinking that it won't happen based on previous conversation but we will just take whatever comes our way.  Brodie looks great and that is all that matters to us.  We have offically decided today that we will be having Brodie's 1st birthday party on Aug 11, 2012 from 11:30 to 3:30 in The Woodlands.  We would LOVE for everyone that would like to come to be there.  We would like to not only celebrate Brodie's first year of life but also for everyone that would like to meet him to come out.  Whether you are are family, a good friend, medical staff or someone that we have never met that has followed his story we would be honored to have you.  The only thing we ask is that you let us know so that we know how much food to get.  There will be a splash pad, bounce house, playground, food and fun.  You can email us at vonasteward@msn.com.  Also, if you would like an invitation please give us your address.  Thanks again for everything that all of you have done and hopefully we will get to personally thank you in August.

Brodie 9 Months

It is hard to believe that Brodie turned 9 months on Tuesday.  Time has flown by and it blows our mind that in 3 months he will be one.  I can't tell you how proud of Brodie we are right now and how thankful we are that he has made so much progress.  He looks really good and is such a happy baby.  He has now been off oxygen for over a month and it looks like we will get the trach out maybe next April.  That seems like a long way off but it is definitely something to look forward to.  Brodie is sitting up by himself, clapping and even says mama and dada.  We never dreamed that he would progress as well as he has but we are so pleased.  He still has a tough time being on his tummy and when we put him on all fours his right side is too weak to keep him up.  These are the first signs of the effects of the stroke that we have seen.  Hopefully with all of the therapy that he gets he can overcome these deficits.  He had a developmental appointment on Thursday and they were amazed at his progress. They put him at 7-9 months and said he has caught up on quite a few things.  Life for us is still busy but it is very rewarding to see how far he has come and we know he will continue amazing us daily.  Tomorrow our church is doing their baby dedication so Brodie will be a part of that.  If any of you would like to watch it you can go to this link at 11:30 tomorrow and watch it live http://live.woodlandschurch.tv/.  We are so thankful to all of you a for everything you have done for us and hope that you are as proud of Brodie as we are.  I am also going to post a recent picture of our two boys as well so look for that.  Hope everyone has a wonderful Mother's Day and I know this one will certainly be special for LaVona. 

Brodie Eight Month Birthday

Sorry that I have not posted in some time.  We have been very busy and I keep saying I will do it tomorrow and tomorrow never gets here so I decided to do it today.  We can't say enough great things about how Brodie has been doing.  He has exceeded our expectations and continues to amaze us daily.  We went to the pulmonologist the other day and when he walked in he was amazed at how well he was going.  He was off oxygen and smiling at him when he walked in.  This doctor remembers the Brodie that "may not have enough blood vessels going to the lungs to sustain life."  He gave us the go ahead to keep him off oxygen as long as his saturation stayed above 94.  We have kept him on and off of oxygen but I am proud to report that he has not had oxygen since Thursday of last week and shows no signs of needing it.  This is far quicker than we thought based on the requirements of almost four months ago.  The pulmonologist said he hoped to have him off oxygen all together before he turns 1 and then get the trach out after RSV season next year.  That would mean that he will have the trach another year.  I think that he will be completely off oxygen soon and hopefully we can talk them into taking the trach out before he turns 1.  We will see and we are pleased with either of those options but Brodie has shown us time and time again that he surprises us.  His latest trick is sitting up all by himself.  They set that a a goal for him but I don't think they ever thought he would do it so quick.  He is grabbing for toys, putting them in his mouth and even has his two bottom teeth.  The only thing that he is struggling with is tummy time.  They would like for him to be able to do 5 minutes and he can hardly do 1 minute.  Would you want to get on your tummy with a trach?  We are working on that and rolling over so hopefully he will be doing that soon.  Currently he is sick with something and not himself.  He has about 8-10 bowel movements a day and has a lot more secretions.  Hopefully he will be over this soon because he has not been as happy the last few days.  Thanks so much for the continued support and prayers.  We can't thank everyone enough for the help we have received over the last eight months and it has been exactly a year since went to the ultrasound and found out the news of Brodie's CDH.  We however have been blessed with an amazing boy that continues to prove that he is a fighter and has reminded us what life is all about.  Each of you has helped us in some way along our journey and I hope that Brodie's life has helped you in some way.  Again, I am sorry for not posting in a while and keep this updated more often now that everything is slowing down.  IMMEDIATELY after posting this I will post pictures (sorry for that too).  Hope all is well with everyone and have a great week!

Brodie 7 Months

It is hard to believe it but Brodie is turning 7 months old tomorrow.  Things have still been hectic but we are doing well.  Brodie has been doing great.  He recovered from his surgery and has yet to vomit since he got the fundo.  The only bad thing about it is that he gags alot but nothing comes out.  This can be very tough to watch but  I think it will get better with time.  He has been progressing and has physical therapy every Tuesday and Thursday and occupational therapy every Monday and Wednesday.  He is grabbing toys with both hands and he even sat unassisted last night for about 5 seconds.  He has two teeth coming in and just loves to show them off when he smiles.  Overall he is healthy but it wouldn't be Brodie if he didn't have some issues.  Sunday night we had to go up quite a bit on his oxygen and when we would take his oxygen off his numbers would go down in a hurry.  We were pretty worried about him but he has since gotten back to where he was before.  The neurologist was concerned about his head size since it has gone from 25% to 50% to 75% on the growth chart since he was born.  We had a follow up MRI and they said that he had benign hydrocephalus.  I am not sure that I even understand fully what this is but I understand it to be excess fluid in the brain but not enough to worry about right now.  We have to go back in for another MRI in 6 months.  We are so proud of how far he has come and are amazed by him daily.  This past Saturday I took him off of oxygen for two hours and he stayed above 95 the whole time.  Yes, our little Brodie was breathing on his own for 2 hours with no problems.  We are so encouraged and it seemed like for that small amount of time that a little bit of light peeked through the end of the tunnel.  We know we have a long way to go but it is nice to know that he can do it on his own for a significant amount of time.  Bradie turned 3 on Monday and it is scary how fast time goes by.  Even though times are a bit difficult right now, my fear is that the time goes by too fast and that we are too busy to enjoy the early years of Brodie.  We can't thank all of you enough for all of your help, support and prayers.  I wish each one of you could meet him and see one of God's little miracles.  I promise that I will put up pictures soon.  We got both the boys pictures done last week and they turned out great.  Hope everyone has a great week!

Home from the Hospital

We finally made it home from the hospital late Sunday night. We couldn't be more happy to be home. Brodie has been doing so well since we have been home. He hasn't been throwing up which makes things much easier on all of us. He had a swallow study on Tuesday and he handled everything except for straight liquids. Our neuro appt was ok but we never know what to think when we leave those appts. He did tell us that he would have deficits but I am not even going to say what they are because none of it is for sure in our eyes. The neurologists are not the ones that decide his outcome they just predict it. God will develop him for His plan and we are comforted knowing that it will be the best life for him. So for now we leave it in His hands and pray for the best for Brodie. We took Brodie out to dinner for for the first time since it was nice and we could sit outside. We had a great time and think it was good for both the boys to get out. Funny story while at dinner (not really funny but if you know us it is our typical luck). We had on two tables around us so we felt like we were away from the masses. The guy on one side of us lit up a cigarette and started smoking about six feet from Brodie's oxygen and the other couple got cold in almost 80 degree weather so they had the waiter turn on the giant propane heater that was about 10 feet from Brodie. In the entire outside area there was no one else smoking and no other crazy people that need heat when it is warm out. It is comical now since we did not blow up but what are the odds. Brodie has been doing great in physical therapy and occupation therapy starts on Monday. They have cut our nursing hours so we only have nurses 3 days a week and every night from 10-7. We are starting to get more rest but still pretty exhausted. We are just thankful every day that we have him with us and don't take a minute with him for granted. Also, he has his two bottom teeth coming in and one of them is starting to poke through.We will miss that gummy grin when they come in.  Hope that everyone has a great Friday and weekend.  Thanks so much for all of your support and prayers. 

Surgery was Successful

Brodie's surgery was a success. He had a complete overhaul and is doing amazing considering what he went through. As I write this he is laying in one arm as I type with the other. He is grabbing for my phone and just smiling away. He got the g-tube and a fundo. A fundo is a procedure where they wrap part of your stomach around your esophagus so that when his stomach fills up it clinches the esophagus not allowing for reflux. Hopefully this will keep him from vomiting and significantly change our lives. He was also circumcised and had his appendix out. There was nothing wrong with the appendix but the surgeon said he just removed it while he was in there so that he would not have issues with it later in life. One of the benefits of the surgery is that he no longer has tape and a tube on his face so we can see all of his handsome face. This time around the hospital seems to not be as easy to handle. Before we were working to bring him home and now that we have had him home we just want him to stay. It is harder now that I am back at work but hopefully he can go home soon. They are saying maybe tomorrow or Sunday. This should be his last procedure for a while until he gets the trach out. He has an appt. with the neurologist so we are both excited and anxious. Please pray that it goes great and that we get good news. As for LaVona and I we are exhausted and ready for things to settle down. The bad thing is that insurance is cutting our nursing hours so that will take some getting used to. We are just so thankful and blessed to have him and all of the exhaustion and stress is well worth it. We could not imagine not having him in our lives and there is not a day that goes by that I don't look at him and say wow to myself. Thanks to all of you that continue to support Brodie and care for him. We will keep you updated on his discharge and neuro appt.

Happy 6 month Birthday Brodie

Today is Brodie's 6 month birthday and he is doing better than ever.  He has his first physical therapy session tomorrow so we are excited to get that going.  He has been pulling the feeding tube out of his nose alot and it is getting harder and harder to put it back in.  We decided that it was time for the g tube (feeding tube in stomach).  Brodie went to the doctor yesterday to see the surgeon and had a GI study done.  They said that he did not have much reflux and that his pneumonia had cleared up.  With this news they gave us the go ahead for surgery and set it for the 14th.  Once this is done he will no longer have anything on his face.  He should be in the hospital a few days and then it is back home to get stronger and work on getting the trach out.  He is on very little oxygen right now and his vomiting has gotten much better.  He is still draining every ounce of our energy but we are so proud of him with how far he has come.  When the physical therapy people came out to do their initial assessment they asked his history and we told them that the neurologists said that he would never walk.  They were shocked and told us that there was no way that he would not walk.  They said they would not guarantee he would be a track star or that people won't notice a difference in his walk but that he definitely would walk.  This was great to hear.  Now we understand that this doesn't mean he is going to walk but he has been moving both sides so it just supported what we were already thinking.   He is smiling more and he even laughs now.  We are so happy with where he is at and look forward to seeing his progress.  We will let you know how the surgery goes on Tuesday and hope everything will go great.  Thanks for all of the continued support and kind words.  Hope all is well with everyone and I will get some updated pictures soon.

Get This Tube Out of My Nose

Brodie has been doing great lately. He has not been without his challenges but overall we are so pleased with everything. We went the pulmonologist and he was happy with Brodie's progress and was optimistic about getting the trach out this year. While we were there he told our nurse to shut his oxygen off and he did quite well. The goal is to wean his oxygen and then try to get him off of it during the day. If we can do that we will move to weaning at night. If he handles that he will order a sleep study and makes sure his O2 and CO2 levels are good and then we can get the trach out. He feels like we might be able to do this by the time he turns one. I can't tell you how much this would change our lives. We stay so busy with his care even with nurses that we are more exhausted than ever and I am sure that it will only get more difficult. I am going to head back to work on Feb. 6 which will be great because it is time but it will be hard to leave LaVona. I think that being a stay-at-home is a difficult job in itself much less taking care of Brodie. We went to see the surgeon Monday and he said that he thinks he is getting over pneumonia. He said that the blood in the trach was from that. Scary to hear that word but we are encouraged that it did not land us in the hospital. We also talked to him about the g tube (feeding tube in the belly). He feels that he needs it and we agreed so he will probably have that surgery in an month an a half. The tube in his nose came out the other day and it was difficult to get back in because now that he is older and more aware he likes to fight us. If he was not a fighter he would not be here but come on Brodie don't fight your parents. The surgeon just wants to wait until the pneumonia fully clears up. On these two appts. we were reminded of what amazing men these two doctors were. We will forever be blessed just by knowing them and thankful that Brodie was in their care. Please continue to pray for Brodie and our family. Please pray especially for LaVona and I as we transition into our "new normal". When we actually can find time to reflect on theses past few months we are always amazed at the outpouring of love and support and we thank each of you for making this a wonderful journey and for teaching us what life is all about. Hope everyone is making the best of 2012 and I will try to keep this updated more often.

Settling In

Things have been pretty uneventful this last week and we are starting to settle in.  We even took Brodie to the mall today just to get out of the house.  We can't take him inside but we could walk around the stores in the outside part.  We are starting to get regular nurses and have most days and nights covered.  Tonight as I was strolling him around all I could think about is how difficult life would be if he would not have made it.  Life is by no means easy right now but I couldn't imagine not having Brodie in our lives.  I would not change a thing that we have gone through because I know that he is special.  He is starting to show his personality and he smiles at us more and more each day.  He has started to take some rice cereal so we are encouraged by that but it is a small amount.  Our newspaper article came out this week and we must be experiencing slow news days because we were on the front page.  Hopefully some people will read it and become aware of CDH.  The link to the story is

http://www.yourhoustonnews.com/spring/news/couple-celebrates-having-their-baby-home-after-a-severe-diagnosis/article_13931994-70a9-565a-a930-6ff54c1d3d33.html

We look forward to the days ahead and can't wait to see Brodie's progress.  Tomorrow we are going to try getting on a schedule so we will see how that goes.  The days go by and we can never get the things done that we need to do so hopefully a schedule will work.  Thanks for all the continued prayers and support. 

Happy 5 Month Birthday Brodie

Hope that everyone had a great New Year's.  Things have been going great with us except for we are exhausted more than we have ever been.  Between taking care of Brodie, doctor's appts, no night nurses and visitors we have been running on empty and don't know when we will get the proper rest.  The nursing is getting much better but because of the holidays it was tough to get steady nursing.  Around the New Year's there were three straight nights that we did not have nurses.  It is hard to sleep when you don't have a nurse so we bring everyone out to the living room and just sleep there.  We are afraid since we are so tired that we will sleep through the vent or monitor going off.   Brodie has been doing great lately.  He had a developmental appt and the doctor said that after reading his chart he couldn't believe that the baby sitting in his office was the same one.  He is anywhere from 2-4 months developmentally but they are pleased with his progress after all he has been through.  The only issue he saw was that he is bring his hands together but not tracking his eyes like he should.  The doctor said that almost always the tracking comes before bringing you hands together.  So now we get to add ophthamologist to our appts.  After that we went to see an ENT because he sporadically coughs up blood through his trach.  They looked down his trach and saw nothing so they got concerned that he had blood in his lungs.  We were then sent to the emergency room and stayed there for 6 or 7 hours.  After doing a bunch of tests they think that he is ok and we just need to keep an eye on it.  We see our regular ENT on Tuesday so we will keep you updated.  We went to the Texans playoff game yesterday.  It was the first day that we have both been able to leave the house at the same time.  We had our nurse and sister-in-law (Thanks Leslie) stay with him.  We all had a great time and Bradie really enjoyed himself.  We can't tell you how great it is to have Brodie home and we are enjoying our family at home together.  We are having difficulties getting a routine together but it will come together soon.  The newspaper came and did an interview about Brodie and our family so we are really excited that we will be able to educate people on CDH.  Someone saw our blog and has contacted us from the PR department at Texas Children's to help us make people aware of CDH.  Thanks to all of you for reading our blog and keeping up with Brodie.  We look forward to continued good news and hope that in a few months we can start talking about closing up the trach.