Welcome to our site about our son Brodie Dick who will join our family on August 8, 2011 at 8:00. At 22 weeks we went in to find out if we were having a boy or a girl and we found out that we were having a boy but that he may have a birth defect. After an agonizing week we found out that our son had CDH (Congenital Diaphragmatic Hernia). CDH occurs when the diaphragm fails to fully form, allowing the abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births and a baby with CDH is born every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. This will be a journal of our journey and will allow our family and friends to keep up to date on what is happening with us and our son Brodie. Thanks for your prayers and support!
Wednesday, August 31, 2011
Although the talk was difficult today we still believe in our Brodie. We went home around 7:30, ate dinner and put Bradie to bed. My mom is staying the night with Bradie so that we can spend the night here (Thanks Mom). It looks like we are now official residents of Texas Children's Hospital. We just feel like we need to be with Brodie and make sure that he knows we are there for him. During the day when we are with him he seems to do well but at night is when he seems to have his issues. We will just have to take turns holding his hand so that he can always feel our presence. LaVona and I are hanging in there as well as could be expected. On the way to the hospital we just held each other's hands and turned some music on. In the car we are always talking and laughing but tonight all we could do is comfort each other with a simple hand. I don't know about her but I could feel the fear of the unknown, sadness for Brodie's pain and an unconditional love all with a simple touch. We truly feel that we are bringing our boy home and we will stay up here as long as he needs us. We have an amazing son at home and we miss him terribly but we know that he is in good hands and that he knows that we love him. Brodie's numbers have been steady most of the day but have not been high enough to wean the oxygen. I hope that tomorrow will bring on some weaning and some positive progress. Thanks for all of the kind messages and prayers. Before we left Bradie gave his musical seahorse to us so that we could bring it to Brodie. We thought it would help to soothe him but the oscillator is so loud you can't hear it at all. Goodnight to everyone!
At times I have felt like the doctors we trying to tell me something but I never really wanted to know what they meant and I sometimes felt like I was reading things into what they were saying. Well, this morning they spoke to us loud and clear. They said, "We have done all we can do at this point and now it is just up to him". We have all seen these words spoken in movies and in tv shows and you can't imagine what it is like to hear those words. Speaking from someone who has now heard those words it is 100 times harder than you can imagine. To hear some of the things we have heard this morning is difficult be we know that he is going to fight the good fight. It is not in our hands, the doctor's hands or even Brodie's hands. It is and always has been in God's hands. I can't say that I am going to understand or even be able to accept if we don't bring him home but I know that we will someday all be better people because of this. We will never give up on him and still believe in our hearts that we will bring him home. The last thing that the doctors said is that it is going to be a slow climb up and a fast crash down. Tough to hear but as long as he is still here and they are giving us any chance then we are going to fight. Please know that this is a difficult time but also know that I have the most wonderful wife and together trusting in God that we can make it through anything. Just pray for Brodie and that his lungs will continue to grow and strengthen. Thanks everyone for the support.
We came in today and he was back up to 100% oxygen support. His last few blood gas numbers were good but he just can't seem to hold steady on the lower settings. They came in and did an echo on him this morning and that made him very unhappy and it dropped his oxygen saturation down. Again, he did not recover so they had to bump him up to 100% support. He does look really good today and maybe today we can get some good pictures. His breathing tube has been pulling on his upper lip but today he looks comfortable. At this point we look for the smallest positives to hang on to. Today they will do a changing of the doctors and fellows. This is going to be tough because we feel they know our baby best and we just want them here for the duration. LaVona really likes our fellow and the fellow really loves Brodie. The day we got the news of the severity of the brain damage she saw LaVona in the hall and gave her a hug. She said that Brodie meant as much to her as he did to us. We will miss her and are thankful that she was put in our life. I just know that if we could hold Brodie that he would be calm and his numbers would improve but that just isn't reality right now. We are going to continue to fight this battle with Brodie no matter how tired or emotionally drained we get. Please take some time today to pray for Brodie. He is on the edge right now and we need him to start making some progress so we can get him out of here.
Tuesday, August 30, 2011
Brodie was stable most of the day. The biggest problem is he is so sensitive to everything and when anyone messes with him he has a mild setback. Around noon the nurse changed his diaper and readjusted him and his stats went way down. They ended up increasing his oxygen to 81% and he stayed on that all afternoon. The doctors told the nurses that they were to keep their hands off of him. The nurses have to touch him for some stuff so when the night nurse came on and did her assessment his numbers went down again and they had to increase his oxygen to 84%. He worked real hard to get down to 73% but with two assessments he was set back quite a bit. Hopefully he will do well overnight and will not be so sensitive tomorrow. He does seem to like us by the bed holding his hand so that makes us feel good. It is going to get tougher in the next couple of days if he does not start to strenghten. Tomorrow is another day and we can't wait to see how well he does.
This morning we have been met with encouraging news as soon as we arrived at the hospital. They said that he did well overnight and that they have been weaning his oxygen on the oscillator. He is now down to 75% oxygen and his pressures are all the same. The great news is that he is tolerating the lower settings and his oxygen saturation is still in the 90's. We are encouraged but cautious since he still has a long way to go and many issues. The surgeon said he had a significant amount of fluid in his left lung and the team was going to discuss what they should do. Since he is stable they really don't want to mess with it but if it is impeding his progress then maybe they will think about doing a procedure to remove it. They are also trying to move all medication over to oral so that they can remove the arterial line. The longer the line is in the more there is an increase for infection. We just pray that he continues on this track because if he doesn't the doctor just came by and told us that they are going to have to do something riskier. The issue is that when he is on the ventilator or oscillator his body tries to fight back from all the pounding by setting up a defense that could potentially cause a huge setback. We are in a race to get his body better before his body starts to fight back. It is difficult to understand much of this but we do our best and try to let you know the best we can. We just pray that he has a good day today and that we never have to try any of the riskier procedures. Thanks for all the prayers and to all that have given blood.
Monday, August 29, 2011
Today is Brodie's 3 week birthday. It seems like it has flown by but it is hard to remember what life was like before Brodie. Today has been good but a little bittersweet. He has been more awake and aware than in the past but he also seems to be a bit more agitated. It is hard to tell yourself that he is not in pain if he is moving around and seems like he is gagging. He also looks at us and that is painful because you know he just wants our help but all we can do is smile and talk to him. They went up a little on the oscillator pressure and when we came in his numbers were a little low. Over the weekend when a nurse would do something to him his numbers would remain where they were, now they are plummeting like they have done in the past and it takes longer for him to recover. There is now a sign on the door that requires anyone going into his room to check with the nurse before entering. He is not doing well with stimulation but they say that he needs to feel and hear us. It is just so hard because we know that he is just one small issue from things turning bad quickly. We just want him to know that we are here and that we will do anything possible to bring him home. We are thankful for each of the first 21 days that we have been able to spend with him. We don't know what the outcome is going to be but we do know that we will be by his side along the way.
Sunday, August 28, 2011
Today has been a quiet day and it is just what we needed. Brodie's numbers have stayed the same and the dopamine that they gave him for the low blood pressure seems to be working. They even went down on one of his settings and he seems to have tolerated that. We can't get too excited because it was such a minor change but it has been a long time since they made a change and didn't have to change it back. We look forward to the week ahead and we know it will have it's ups and downs. Our prayer is that we will have far more ups than downs. We are doing better today than we have in quite some time as well. Brodie looks much better than he did yesterday and he had his eyes open for a little while today. We thank you again for all of the support. We are amazed at how many people want to take time out of their day to stay updated on Brodie and send us a kind word. It also amazes is at how Brodie has touched the lives of so many people that we have never even met. We would also like to take a moment to thank Lindsey for coming to the hospital and letting us know that we are not the only ones to ever go through this. She has a daughter named Brooklyn that was born with cdh. She is now 8 months old and doing well. She still has a tough road and needs your prayers. Hope everyone has a great week and we look forward to posting good news.
Saturday, August 27, 2011
Last night we called the hospital and Brodie was doing better than he had since his setback. They said that his oxygen saturation was 96% and that if it stayed that way that they would lower the settings on the oscillator. This was the best news that we have heard in a while. Unfortunately his numbers did not stay there but at least we know he can get there. Bradie is going up to the hospital today and he is very excited. It seems like Brodie's recovery is going to be very slow and there is no rush to adjust the settings unless they are sure that he can handle them. The weekends are usually uneventful since his regular doctor is not there but we welcome that right now. I made some minor changes to the blog. We are no longer on pacific time and I think that I have fixed the problem with the comments. Before only members could comment and now everyone can comment. Quite a few people told me that they could not post so I tried my best to fix it. You should be able to click on the comments and it will take you to a page where you will be able to post. Thanks again for all of your support.
Friday, August 26, 2011
This morning we have had a good start to the day. We called this morning at 5:30 and they told us that his blood gas has been good the last two times. We took advantage of the better news and got a little extra sleep this morning. This is the first day in well over a week that I don't feel like I have sandpaper on the back of my eyelids. Please do not mistake this as refreshed but at least I feel a little better. LaVona is tired but got a much needed nap as well after pumping at 6. I am amazed at her ability to be so tired and still get everything done. When we get home I just want to relax and play with Bradie. LaVona plays with Bradie, does the wash, cleans the house, pumps and everything else that needs to be done. I can't thank her enough for all that she does and without her our lives would be a wreck right now. Brodie's chest X-ray showed a slight improvement and we are awaiting the results of another echo. He needs to continue moving in the right direction and as you probably have figured out it is going to move very slow from here on out. If they go down on any of his settings they will be minor and it could take over a month to just to get him back to where he was. Prayer is what got us here and that is what will continue to help him progress. Hope that everyone is well and have a Happy Friday.
Thursday, August 25, 2011
This was a very emotional day. Brodie is just not able to get his numbers up consistently. The doctors gave us some news that was very difficult for us today. They said that Brodie is on the maximum support that they can give him. There are some medicines that they can give him but they are very risky and only will be used as a last ditch effort. The doctor said things are nearing the end and we are not quite sure what he meant but I am not sure that I wanted to know. The way I feel right now is that I am watching my son slip away from me and as a father it is the hardest thing that I will ever go through in life. My job as a father is to protect my kids and right now I am helpless and can do nothing but watch and pray that he recovers. Just a week ago we felt like we had made progress and it looked like we won the fight and now we a struggling to keep him alive. To say that it is a roller coaster is an understatement. We are not done fighting and we will do whatever it takes to bring our baby home. The more positive new is that although his numbers are lower than we would like they have somewhat stabilized. The doctor says that his urine output is good and his GI tract seems to be working good as well. We need everyone to get behind Brodie because he needs every little bit of help that he can get right now. Tomorrow we are going to go in to the hospital with a great attitude and have faith that someday we will bring our baby home. Please send this to everyone you know and let them know that our family needs every prayer that we can get right now. Thanks again for the encouraging messages and support.
Last night we called at 1:30 and they said he was not doing well and that his numbers were down. You probably know how well we slept after that. We decided we would call again at 4 and if he was not doing better we would go in. When we called at 4 they told us he was doing better. When we got in he was not doing well and we can see that we have a rough road ahead of us today. This is not what we needed today but we are willing to do anything to support Brodie and let him know that we are here to fight the fight with him. They are going to try a few different things to try get his stats up but some of them take days so we are probably looking at a pretty difficult rest of the week and weekend. This is getting tougher by the minute but we know that he has already overcome so much and he is going to fight as hard as he possibly can. We were having a low point yesterday and struggling with if we should leave Brodie or stay and not get to see Bradie. LaVona opened up her Bible and saw these words, "You may go, your son will live". It is just amazing how that happens. Please continue to pray for us. It is getting harder to just watch him lay there and get beat up by the oscillator. We can remember earlier this week holding him and seeing how far he had come and now he is just fighting for his life.
Wednesday, August 24, 2011
Today was supposed to be a quiet day. That couldn't have been farther from the truth. The morning was really quiet and not much happened. When we got back from lunch it was up and down the rest of the day. I can't begin to tell you the toll that all of this is taking on us physically, mentally and emotionally. This is the hardest thing that we have ever been through and sure hope that this is the hardest thing we will ever encounter. He would do well and then an alarm would go off and people would come in and change something and then it would happen again. We just need sleep and for Brodie to have good full day. We don't want to leave the hospital at night but know Bradie needs us. Last night I was sitting on the couch and Bradie's right eye was welling up with tears. I asked him if there was something wrong and he said, "yes, I want my baby brother to come to my house". I don't know how much he knows but I am sure he does know a little and he wants him home and that just breaks my heart. At this point we just need to catch a break. Please continue to pray for our family and thanks so much for your messages and emails. It is amazing what a little kind word will do.
Not much has happened today. Brodie's numbers stayed the same overnight. While he is not moving forward he is at least stable and holding steady. He has some extra fluid in his chest that they are concerned about. The good news is that they did do an EEG and he is not having any seizures. They may start weaning the seizure medicine and see how he does. The bads new is that they said that this has probably set him back a few weeks. They will certainly go much slower off the oscillator and the ventilator. We are just thankful for an easier day. The past few days have been crazy. Hopefully we will get some good news soon.
Tuesday, August 23, 2011
Today was unfortunately another tough day. When we came in there were so many people showing Brodie attention which is never good and it has continued through the entire day. He got his arterial line back and never really could keep his numbers where they needed to be. They fought hard to keeps his numbers up and did a last ditch effort but they had to switch him to the oscillator. This brings back some very bad memories of the beginning. This was the machine that he was on right before they put him on ECMO. They do not know whether this has been caused by an infection or whether it is just because his lungs are damaged. There has been nonstop action and it has taken its toll on us. He has been stuck quite a few times today as well so we are done with the bad stuff and ready to get moving back in the right direction. Yesterday we were holding him and he had very little attached to him and today he is attached to alot and just laying there asleep. We are being tested to the fullest right now but we are leaning on each other and our faith to get us through. This is more than a bump in the road but I know that Brodie will pull through for us. We need more prayers than ever (seems like that has been everyday for the last week)and we appreciate all that are showing us and Brodie so much love.
We got a call this morning at 6:30 that his breathing was not doing as well as it has been. They said that they had to increase ventilator support. When we got to the hospital the nitric machine is back and now they have two monitors measuring his oxygen saturation. There is much more activity around his room and this is a huge setback. They showed us the chest images and there is some collapsing of the right lung and possibly a little on his left. They have cancelled the MRA and are talking about an infection as well. They are talking about putting him back on the EEG machine and are going to do another echo. We had finally recovered from the news yesterday and now we get hit hard with this. We were able to get through yesterday by telling ourselves that he would eventually come home and that was all that mattered. Now today happens and you question if that will ever happen. We know he is in good hands and just need your continued prayers. Thanks!
Monday, August 22, 2011
Right now I am sitting in a recliner at the hospital in between my two little boys. There is no place on Earth that I would rather be. This has been an emotional day but I have to say that we are doing better now. I don't know if will ever be able to accept that Brodie will not be given the chances that other little kids have but we are at peace knowing that God has given him to us and we know we will give him the best life possible. Bradie just came over to me and saw that I had a blanket of Brodie's and he got mad at me and said, "Give back to Brodie.". I would have to say that Brodie has the best big brother that a little boy could ask for. LaVona said something today to her brother that put things in perspective. The machine that saved Brodie's life (ECMO) is what caused the damage to his brain. We just have to be thankful that he was saved by this machine and not worry about what it has taken away. We do however have another big day tomorrow. He is going tomorrow morning for a MRA. The best we can understand this a test where they can see the flow of the blood vessels to the brain. This will let us know if has any clots or if there is any risk for more strokes in the future. This will be another difficult morning so keep us in your prayers. Thanks to all of you. We are not only leaning on each other but the support of each of you. Will keep you posted of what we find out tomorrow.
Today we received some devastating news. Brodie has significant damage to the left side of his brain. It damaged the areas that control movement and speech. The neurologist told us he more than likely would not walk and they didn't know about his speech. They said that in babies the right side can take over speech but we will not know that for some time. You can imagine how hard this is for us and all we need right now is prayers for Brodie and us. We will get through this, it just may take a couple of days. We believe that God put him in our lives and we know that together we can all get through this difficult time. Someday Brodie will read this and we want him to know that even though we got some tough news today we know that he is going to live a wonderful life and make so many people happy. We are dedicated to him as parents and will make sure that he has the best life possible. Feeling him in our arms yesterday assured us no matter the path that this road takes us that the love we have for him will get us through anything. We do ask that you respect our privacy at this time. If you want to send us an email that is ok but we are just asking that people do not call or text at this time. We understand that Brodie has touched so many lives but we just need a few days to get through the initial blow. Thanks again for all your prayers and support.
Sunday, August 21, 2011
Today was a good day and it is exactly what we needed at this point. It is impossible to say how great it felt to finally hold him. We have been staring at Brodie for two weeks now and all we have wanted to do is to pick him up, hold him and tell him that everything was going to be ok. He did not wake up but it felt more real than ever. I will add some pictures of each of us holding him. When we hold him we forget that he is sick and just squeeze him tight. Tonight unfortunately we feel the same way we did the night before he was born. The MRI will show how much damage has been done to his brain. We are very scared but are prepared for whatever comes our way. From the minute we found out about his CDH all we cared about was bringing him home. We will let you know when we find out the results. The good news is a newborns brain can do amazing things to overcome any deficiencies there may be. Tomorrow is going to be great and thanks for the prayers for our little guy.
The day has finally come. We came to the hospital and were met with good news. He did not have any seizures from 3 pm yesterday to 8 am today. They took him off of the EEG machine and took out the arterial line in his belly button. He is also on one oxygen saturation monitor. What this all means for us is......We finally get to hold Brodie. When the nurse gets back from lunch we get to hold him in our arms for the first time. This was a nice and very unexpected surprise. On the walk in LaVona asked me what I thought when I walked by the parents in the nicu holding their babies. She said she was happy for them but very jealous that we could not do the same. We are now in the hold your baby club and jealous no more. His numbers look good but there is one very dark cloud still hanging over our heads. He will go in for his MRI tomorrow morning at 6:30. This could give us a fairly good idea of how much damage has been done to the brain. You can imagine the anxiety we feel. We will shelf that for now cause we are going to be able to wrap him in our arms. Please pray for him and his appt tomorrow. We have made it this far and we truly believe it is because of all the prayers for Brodie.
Saturday, August 20, 2011
Today we woke up and are officially wiped out. No matter how much sleep we get it never seems to help. We are just constantly doing something and have no time to rest. Our son Bradie has apparently been energized by our lack of energy. Bradie also has quite the reputation with the nurses. Each new nurse says that they have heard about Brodie's brother and how cute he is. Brodie is having a very laid back day. He has been sleeping the entire time that we have been here. He is finally off of the nitric machine so it looks like we might be a go for Monday. They are not allowed to take out the nitric machine for 24 hours just in case he needs to go back on. His numbers fluctuate and need to get a little better if he wants to stay off. He is still having seizures and they have upped his seizure medicine. We really need those to stop for both him and us. It is tough to hear about them and even tougher to watch. We just need continued prayers that the brain injury is minimal and that he will be able to live a normal life. Hope everyone has a great day and I hope we will be giving you some good news soon.
Friday, August 19, 2011
I know that in just about every post I thank everyone for their thoughts and prayers but I wanted to do entire post about it so that everyone would truly know how much that it means to us. Even though we are going through so much it has actually not been too bad of a journey. Thanks to all the doctors and nurses and support staff at all of the hospitals and doctor's offices. We have met some amazing people and had tons of laughs along the way. LaVona gets attached and hates to see some of them go as we progress through this process. Thanks to both our employers and our bosses for being so understanding and caring during all of the appts and now with the hospital stay. What we need right now is to be with Brodie and each other and without them it would not be possible. We also want to thank our family, friends and even strangers that have been so helpful to keep our spirits up. Without them it would have been impossible to make it through this process. We hear each and every word of encouragement that comes our way and you have no idea what your small act of kindness does to us in this difficult time. Sometimes we feel like this is an impossible journey and then something happens that reminds us that this is much bigger than us and that everything will be ok. It kills us that we can't get back to each of you individually to let you know what an impact you have had on our lives. When we started the blog we hoped that we could get 500 hits and now we have almost 7000. Brodie has touched so many lives and he is an inspiration to all of us. I just pray that everyone that reads this will understand how fragile life is and that life is not about money or things but the people in our lives. Please allow our struggles to help show all of us what life is all about. We love you all. Todd, LaVona, Bradie and Brodie.
Today has been a very uneventful morning. We both got some good sleep but are really dragging. Just can't seem to get caught up on our rest. We are now on day 12 and it feels like we have been on this journey for quite some time. We can't even remember our normal lives. Brodie is doing well and they were doing rounds this morning when we arrived. He is still doing good with the feedings and responded well to the lowering of the nitric. The doctor said that they will lower it one more time tomorrow and hopefully then he can come off. They have scheduled the MRI for Monday at 6. Hopefully things will go well and he will be able to keep that appt. His seizures have decreased dramatically but he is still having them and he is still on the EEG machine. Hopefully we will lose that soon and maybe one day next week we might get to hold him. He has had his eyes opened most of the day. He just looks around and takes it all in. He is not getting that much attention from the doctors today which makes us very happy. LaVona and I are doing good today but we still have some unanswered questions that make things difficult. Please pray that there is not much damage and that he will be able to live a normal happy life.
Thursday, August 18, 2011
Brodie ate his mommy's milk for the first time today through a tube. Most cdh babies have a problem eating milk for the first time because of all they have been through. He did not have a problem and has already eaten more. We are doing much better than we were earlier. We were able to laugh and joke around as usual and were feeling better about our situation. Not much changed with Brodie but we just had a minor attitude adjustment. God gave us Brodie and we are prepared for anything that comes our way. Not to say we don't have a tough road ahead, but we have a great marriage and two wonderful sons. We have a great life and there is nothing for us to be sad about. Brodie did have an EKG and the tech said that it looked good. The doctor said that he is having less siezures right now. Not much will change except for weaning him off the nitric oxide over the next few days. I think this morning there were just too many guys in white coats surrounding us. I recommend that if you own a white coat not to wear it around us any time soon. Hope everyone has a great evening and thanks again for all of the support and prayers.
First I would like to apologize for all of the incorrect words in some of my posts. I read the ones I have done from my phone and sometimes I don't even know what I am saying. Autocorrect is not my best friend. Well we have reached a new low today. I woke up tired and just deflated because of the recent news. LaVona is doing worse than me and it seems that we are having a tough time comforting each other. Usually one of us is up and can pick the other one up but that is not happening right now. I guess it is all just catching up with us and beating us into the ground. The doctors act like he is doing good from a breathing aspect but there are pic line issues, urine output and the big neurological issue. The seizures have continued and they said that they seem to be coming from the same part of the brain which would lead them to believe that he may have had a stroke. You can imagine the blow this was to us. They probably won't be able to do an MRI until Monday so this is going to be a difficult next few days. The MRI will show them what has happened but we will not know his prognosis for some time. Please pray for Brodie and our family. This is tough but we know that he was given to us for a reason and can't wait to bring him home and give him the love and care that he needs.
Wednesday, August 17, 2011
They finally did a head ultrasound this afternoon and it was negative. He is still having the seizures and they have decided that they will put him on the EEG machine for 24 hours so that they can monitor his activity and see what happens in his brain during the seizures. He had 10 siezures in the hour that they did the first EEG. They were going to do an MRI tomorrow but decided that they will have to wait until he gets off of the Nitric machine. This means they will not be able to do the MRI until next week. I know things can change rapidly during this process and we hope it can get done sooner because it is hard not knowing what is wrong with him. Anytime you hear brain and neurological issues it makes your heart drop. Hopefully tomorrow will be a good day but it is going to be difficult until they can give us more answers. He did get his head dressing off and we were able to see his hair and he was starting to look more normal (until he got on the EEG machine). Thanks for all of the nice messages and kind words. Yesterday felt too good to be true and it was but we will get over this hump and start moving in the right direction again.
The doctor came in and told us that each time that his legs and arms shook that his brain showed seizure activity. They are going to give him medicine and he may need it for the rest of his life. Hopefully this is not caused by an abnormality or bleeding due to ECMO. They are going to do tests this afternoon so we just pray that all of those tests come out ok. This is just another bump in the road and we know that it is going to be up and down. We need your continued prayers and will let you know as soon as we find something out.
Some people have had issues at the blood bank so here is what you need if you go to a Gulf Coast Regional Blood Center in Houston and want it to go to Brodie. Tell than you want to do a direct blood donation to Baby Boy Dick and the number is #3000958181.
Last night things were going great and they took his chest tube out. We were expecting to come up here and get to hold him. Unfortunately when we got here things were different. The doctors and nurses noticed that there was abnormal eye movement and his arms and legs were moving like he was having small seizures. They are doing an EEG right now and will do a head ultrasound later to see what is going on. They are hoping that it is the medication that they had him on to paralyze him or it could be complications from ECMO. This is obviously very scary to us right now so we need all the prayers we can get. We will let you know as soon as we find out which hopefully be soon.
Tuesday, August 16, 2011
Brodie has had a pretty low key day. He seems to be breathing well and has opened his eyes and been looking at us. The doctors seem a bit more optimistic about things right now but he still has some issues he needs to correct. I went and gave platelets today and I hope that they will be able to give them to our Brodie. I will find out tomorrow if they are able to use it for him. We would like everyone to go either give blood or preferably platelets to your nearest blood bank. If you are in Houston you can go to a Gulf Coast Regional Blood Center and tell them you would like to donate for Baby Boy Dick. If you are compatible it will go to Brodie, if not they will credit our account with your donation. I can't even begin to tell you how much blood and platelets that have been given to him and he will certainly need more. I am embarrassed to say that I had never given blood but because of some very generous people Brodie is still here. If you can't donate for Brodie we still ask that you donate so that you may also help to save someone like Brodie. Feel free to ask any questions regarding blood or platelet donation. He is A- for those that would like to know. This process makes you think about things like this instead of just going about your daily lives. To see what it has taken just to get Brodie to the stage he is at has been astonishing. Thanks to all that will choose to donate. If you do let us know so that we can thank you personally.
Monday, August 15, 2011
The surgery went well and now we just have to see how he reacts to the ventilator. So far so good but we still have a ways to go. Hopefully tomorrow is not as crazy and maybe we can leave at a reasonable time and get some rest. Thanks to all for everything and can't wait to be able to post more good news. You can now walk into the room easily and it is much more comfortable. Not only is the machine gone but so are the ECMO guys. We met some great guys but are glad that ECMO is over.
They got his pic line in and and then they did the trial off ECMO. The trial off went well and now he is in surgery. This has been a whirlwind of a day. We were at our lowest this morning and we came back from lunch and it has been fast paced and moving in a good direction. His oxygen saturation has been good but his blood gas off ECMO showed a little too much CO2. This is good but we still have a long way to go. Right now he is strictly on the ventilator and they have a little more room to increase his settings. The goal is to stay off the oscillator. We will let you know when he is out of surgery. Thanks for all of your prayers. If you could have seen how things went from bad to good you would know that the prayers have worked. I was not able to give blood because I needed some more paperwork so that it would go to Brodie and when we got back it has been crazy. I will do it in the morning and then I will be able to get everyone the info of how they can do it. Thanks so much for the interest in giving blood for him.
Well we finally caught and break and he seems to now be on the right track. I went to give blood (which I didn't have the right forms for) and when we got back they said he was doing good. The dr. said that they tried everything to get his numbers to improve but were unable to. The ended rotating his breathing tube 180 degrees and his numbers started to respond. Apparently the way it was sitting it was blocking the flow of air in and out. Sounds like prayers have been answered. We still have a long way to go but at least we have another win under our belt. He is now on ECMO flow of 40 and very low help from the ventilator. They now are talking about taking him off ECMO tonight depending on what the surgeons say. We will continue to keep you posted on this. I was about to send this and the surgeon came down and said they will probably do the trial off in an hour or two and then take him completely off if that goes well. Will post later to let you know how that goes.
This morning has been a very difficult morning. When we go here they had just reduced the ECMO flow to 60 and he did not respond well to that. There were alarms going off constantly and many doctors in our room. In addition to that we have to watch Brodie gasp for air and it is heartwrenching to watch. They increased his flow back up to 80 and he seemed to do better at that point. The big issue now is that we are coming to a crossroad. The circuit in the ECMO machine is giving out and clotting up quite a bit. They are trying to get him to come off ECMO but if he does not respond better to the lower settings then they will have to change out the circuit. This poses two problems. One is that he has a clot in his arterial line which is causing some problems and the other more important issue is that if they change out the circuit it takes you back to square one. If that happens he will have to go another week on ECMO before they can get him off. As you can see things are tough right now and I am asking you to not only pray for Brodie but for LaVona as well. I love her so much and it kills me to see her in such pain. She has been able to keep it somewhat together but she thinks she is losing her coping mechanisms. Do realize that there will be ups and downs and we are just on a down right now. That just means we have an up just around the corner. Thanks again for all of the support and prayers. You have all been so amazing and words could never describe how thankful we are.
Sunday, August 14, 2011
Saturday, August 13, 2011
We called this morning to check on Brodie and they said they they lowered the dopamine for his blood pressure and they said he opened his eyes! We were so excited and couldn't wait to see him. I briefly saw his eyes the first day but LaVona has never seen them. We got down to the hospital and they said he hadn't opened his eyes in a while and I thought LaVona would be really upset that we had missed him opening his eyes. When we got to his bed LaVona talked to him and he opened his eyes immediately. He knew his mommy was there and he wanted to see her for the first time too. I never would have thought that seeing your sons eyes would stir up so much emotion. It felt like we were at least moving in the right direction. It was dark and I know it is early but I am dying to know if he has his Mommy's and Bradie's beautiful blue eyes. Overall a great day and he is still trending well. They said tomorrow night or Monday is when they should do his trial off ECMO. Although we are excited we are also scared. Right now everything has not changed much and they are happy but it gets real when his body has to start doing the work. We can't express to you how much we love him and just want to hold him. It is so hard to see him with all of those tubes and his eye swollen shut but as long as we take him home we are willing to do anything. The nurse told us that we would be lucky if we had him home for Christmas. That one kind of stung. We will let you know as soon as we find out when he is doing his trial off ECMO. That is when we will have to pick up the prayers.
Friday, August 12, 2011
Last night I said that tomorrow would be a great day. Well, I couldn't have been more right. Even though they are small victories he started making more urine and they came down on some of his medicine. They still want him to produce more but they are at least happy with it now. He is looking good and as you can see from the new pictures he is a little puffy but they say that most babies blow up like the michelin man after this surgery. We also brought Bradie up to the hospital tonight and when we were going to our garage he saw the hospital and asked me where I was going and pointed and said, "There hospital". He could not wait to get there and when he saw Brodie he told him he loved him. He knows not to touch him and says that he is sick. Tonight he said a prayer for God to take Brodie's bobos away. LaVona is not doing as well as she would like because she just has not had time to stay off of her feet and rest. The weekend should be pretty quiet but next week is definitely going to be a big week in the life of Brodie. They will try to do a trial off ECMO and see how he does. If he does well then they might take him off the next day. If he does not do well they will put him back on and wait a couple of days and try again. We will be very anxious at this time and it will be stressful as well. If that works then it is time to face the tough question. Does Brodie have enough good lung to sustain life off of machines? That will obviously be the hardest time of all of this. As you can see we still have a very rocky road ahead of us and still need continued prayers and support. It is hard for me to say he is doing good because I don't want anyone thinking that he is even close to out of the woods yet. He is just doing good for the stage that he is in at the moment. We believe that he is a fighter and that he will beat the odds.
We made it to the hospital this morning around 9. We both got great sleep and LaVona got cold for the first time in many months. She was very excited about that. He did good overnight and his levels are still the same. I asked if that was good or if they expected him to be better and they told me that they really don't want too many changes until 24 hours after surgery. Urine output has been the concern of the past couple of days but if that is the worst thing right now we will take it. The ECMO team has a meeting around 10 so we will se what they say for that. Later today I am hoping that he can make some progress. We will let you know when something changes. We just got some good pictures so we will put them on here later tonight. Have tried doing slideshow but for some reason I can't figure it out.
Thursday, August 11, 2011
Today was a good day but we are officially exhausted. There is not much that happened after the surgery. He has pretty much stayed the same which is good but we need him to start showing more progress. We also learned that he will have to have surgery later in life as he outgrows his diaphragm repair. Obviously all we care about is that there is a later in life. We left the hospital around 5:30 which you can imagine was very difficult. We just needed to go see Bradie and relax a little bit since we know that the next few days are going to be long difficult ones. He is still sedated from the surgery so we thought tonight might be a good night. We were able to see Bradie however the relax thing is impossible. We are receiving the comments that everyone is making and we can't tell you how much that each one means to us. It truly helps us to know that people are thinking of us and Brodie is already loved by so many. We knew that God put this in our lives so that we could see all of the wonderful things that would happen through Brodie and sure enough it has blown away our expectations. He is four days old and he has already been loved enough for a lifetime. Someday we will show him this blog and I know he will be blown away at how many people prayed for and loved him. Hope everyone has a great evening and just know that tomorrow is going to be a great day.
About an hour and a half into surgery they came up and said that the surgery was going well and that they would be done in 15-30 mins. An hour and 45 mins later they came out and told us that the survey went well and they were able to put all of the organs back where they should be. It got really tough towards the end because we were scared of why it was taking so long. What a relief it was to finally hear that it had gone well. Right now they are watching him very closely to make sure there is no bleeding or clotting. They have to balance it out so that it does not do one or the other. We will get to see him soon and just can't wait to see him and possibly hold his hand. Soon he will start to swell from being on ECMO for so long so this just does not get any easier. Hopefully his body will start to do the things that it needs to so that we can get moving in the right direction. For those interested there is a book written by a mother of a child with cdh. It is called Surviving C47 and I have read a little of it and I felt like I was reading a story about us. The baby was in room C47 and Brodie is in C48. She is now 8 months old and the baby went through what Brodie is going through right now. You can get it at Barnes and Noble and other book stores. We just pray that Brodie will continue to do well and show progress.
The surgeon just came and and said they we starting surgery. It should take about 2 hours for them to finish. There is a high risk of bleeding so it is a very delicate surgery. At this point we new all the prayers we can get. It was very tough to leave him but we know he is in excellent hands. We thanked the surgeon for all he is doing to which he replied, "Thank God, he is the one I work for." I would have to say that we have the right doctor working on him. We need all your prayers for Brodie right now and please also pray for is because it is becoming more real and tougher to deal with. We are all in this together and know that some day he will come home and we will all be changed by all that has happened. We will post as soon as we know anything.
Wednesday, August 10, 2011
Today was a pretty uneventful day which was great for us in many ways. Tomorrow will be a big day since he will more than likely have his diaphragm repair surgery as long as things continue in the same direction. We are not sure of the time because they have other things going on and if they have emergency surgery Brodie will have to wait his turn. This is a tough surgery because he is on ECMO and they have him on blood thinners and other medicines that make it difficult. He is moving a little bit and squeezed LaVona's hand today so she was very excited. He is so cute and we just want to hold him. It is so hard to have him so close but all we can do is hold his hand and we really should not do that for long. We keep asking the same questions and keep getting the same answers but I guess we just keep asking in hopes that someone will tell us that he is going to make it. He looks so good and his color is great. It is hard for us to understand how he can look that good and be so sick. Bradie came up here today and he is so excited to see his brother. We asked him if he wanted to do a couple of different things when he got here and he said, "Where my baby brudah". We are thinking around noon we will be able to post and let people know how the surgery went. We are holding up well but as the ECMO guy told us in a week it will probably be a different story. The doctor told us today that they are hoping if he continues to do well that maybe they can try to wean him off ECMO this weekend. Please know that we want you to know these things but also hesitate to because with everything that is going on things could change at any minute. Just a side note and nothing of real significance but for all you TV lovers, one of Brodie's doctors is Dr. Jennifer Arnold from the reality show "Little People". Thanks so much for everything and we are truly humbled at how many people are visiting the blog to see how our Brodie is doing. We know how much he is already loved by everyone and feel like we are all in this together. We are so excited for the day when we get to post the title "Going Home". By the way, his full name is Brodie Todd Dick. LaVona won the middle name battle and it meant a lot for Brodie to have my name as his middle name.
This is Brodie's home. You can see his bed behind one of the machines. As you can see he is hooked up to a lot of machines and there is very little room in there for anything else. Since he first started ECMO his numbers have been good. We hesitate to say that he is doing good because he is still so ill but he is at least trending in the right direction. The good news is that he is starting to have some of his medications decreased and we may lose one machine in the next few hours. They have scheduled the surgery to repair his diaphragm for tomorrow morning. His doctor was not sure he was stable enough so he said that the surgeons could schedule it but that if he did not show some improvement they will have to wait. If you already haven't figured it out anything can change at any moment. Just when you hear something good you then hear something to take the wind out of your sails and vice versa. As strange as this sounds I think that this has helped us because we don't get too happy with the good news or too sad on the bad news. I will say that yesterday was a tough day because there was just too much bad news for one day. LaVona is not feeling as good today because she pushed herself a little too much yesterday but she plans to get plenty of rest today. It looks as though we will be in the hospital another night in these luxurious accommodations. Just please know this his condition is still not good so we need your continued prayers and are thankful for everything. I will also post a picture of Brodie so that you can see where the ECMO machine goes into his neck. It pains us to see that he has to go through this so early in life. One line is in his juglar vein adn the other is in the carotid artery. He will actually lose this carotid artery and be left with just one. This could cause development issues and we will for sure have increased follow up due to ECMO. There will hopefully be not much news until later today. We think that we have reach the point where no news is good news. Feel free to ask us any questions on here.
Tuesday, August 9, 2011
They decided to put Brodie on ECMO which is the heart/lung bypass machine. This was a surgery and it went well. He seems to be reacting as they thought he would and now we just wait and watch his progress. It is amazing what they can do with technology and we are so blessed to have such a wonderful hospital in our backyard. There are many risks but at this point we just wait and see what happens. They have taken the medicine away that paralyzes him so our hope is that soon LaVona can see him move around and maybe open his eyes. This would all not be possible without the great doctors and your prayers. We are holding up well but that could change at any moment. They are going to meet and decide when to do the surgery to fix his diaphragm and when to take him off ECMO. They usually like to keep them on for 3-5 days but he could be on for 2 weeks or more. As you probably can tell he is still very sick. We hope to get more news later and will keep you updated as we get news.
I wish we had better news to report but Brodie is not doing as well as of now. His blood pressure is low and is in the process of getting a blood transfusion. His numbers are getting worse and they should be getting better at this point. They have the oscillator that is breathing for him at high levels and his Oxygen and Carbon Dioxide levels are still not where they need to be. They are concerned if he stays on the machine that it will harm his lungs and we certainly do not need that at this point. Over the next couple of hours they will be trying hard to get him to levels that they are comfortable with. If he does not respond to that then our next step is ECMO (heart/lung bypass machine). This is what we have feared the most because this is a risky procedure but they have had success with it in the past. Brodie's is very sick at this point and we need all the prayers we can get. As you can see from the photo he is so cute and all we want is to bring him home with us. There are many doctors working on him and we know we are in the best place possible for his care. We should know some more around 2 and will try our best to keep you informed.
Monday, August 8, 2011
Today was an amazing day! That was not to say that we did not have our down moments. It has been a roller coaster of good and bad news but just to see him has made all the stress and anxiety worth it. His numbers after birth started to go down a bit but were looking very promising after lunch. A few hours later he took a slight turn for the worse. Even though the news isn't great we know that there should be some good news around the corner. There are many different things that the doctors can do at this point. One option is surgery tomorrow to repair his diaphragm. This is not typical however he has alot of abdominal organs and they are creating issues for him. Right now he is stable and they have increased the levels on the ventilator and are hoping that he can stay the same through the night. He is a fighter and is trying to breathe on his own so they have given him medicine to essentially paralyze him so that he does not try to breathe. The doctors want the machines to do their job and they can't with him fighting them. I know there are details that I am leaving out but my brain is fried and I actually had an elevator full of people have tell me that I had arrived at my floor. LaVona is doing good but she is tired and a little out of it. She is a strong and amazingl person and I am so impressed at how well she has done with this each and every step of the way. She has seen Brodie but it is difficult for her to get a real good look at him. I know that we say this a lot but we can't thank everyone enough for the support and prayers that everyone has shown. Without that I am not sure that we would have been able to be strong and keep it together. Tomorrow is a very critical day so please continue the prayers and hopefully it will be a day full of great news.
Brodie was born after 8 and we really don't know stats. Bee are staying surprisingly strong but it is difficult. They seem to think he is a little better than expected but he is very sick. He is amazing and he looks just like Bradie. It is too early to tell but the surgeon said he is looking good. It is so hard to watch him gasp for each breath. LaVona did great and she is dying to meet him. We will keep you posted. It will be about 12 hrs before we truly know his status but we are cautiously optimistic
Sunday, August 7, 2011
Well, we have made it and we are just hours away. We can't describe to you the emotions we are feeling. Excitment, scared, eager, sad and happy are just a few. From day 1 we have been able to go about our normal lives and be our normal happy selves. I think all of the emotion that we have surpressed over the last 6 months has hit us all at once. Today has had its ups and downs (especially when Bradie said he wanted to see his baby brother) but overall we are excited and ready too bring our baby home. We look forward to giving everybody great news tomorrow and will try to post as soon as we know something. I guess we will try to go to bed a little early but I am not sure how much sleep we will get.
Saturday, August 6, 2011
We had our last ulstrasound and it went great. Bradie went with us and was excited that his baby brother was on tv. He seems so excited about being a big brother but we know he has no clue what that means. We can't believe that we are finally done with all of our appts. Looking back it was very draining and we can remember getting the long sheet of all our appts and thinking how tough it was going to be to make it through them all. We would not have been able to make it had we both not worked for such amazing people. Everyone has been so understanding and helpful which has helped us more than we could ever say. Finally got all the plans for Monday done last night and now we are just on cruise control. Now it is just time to enjoy a relaxing weekend before we set out on this journey. We can't say enough about all the support and are humbled by the amount of people that are willing to do "anything" for us. Hope everyone has a great weekend!
Tuesday, August 2, 2011
Today was our last OB appt. Brodie did real well and they also did a growth ultrasound. He is 6 lbs 1 oz. and we got some great pictures of him. It is amazing how much his pictures look like Bradie's did. Well, it is all starting to sink in what we are about to go through. We are excited but we are also scared of what is around the corner. We just have one more ultrasound on Friday and then that's it until 8/8 at 8:00am. Our minds have been so busy with everything that we both thought we would have to be there at 7:30 but we got slapped back into reality when the doctor said to be there at 6. Thanks to all that have been so kind and thanks for your prayers.