I just wanted to thank each of you for your prayers and I thank God each day for everyone who calls or emails to uplift us. It is amazing how I can hold Rebecca while she is seizing and not cry, but a kind word, note, card or email reminds us of God’s working through the members of the body of the church and our tears begin. God is good and His presence is evidenced in the persons who pray for us and request that He keeps us close. It is evidenced in the hope that we have in our eternal life and our gift of salvation. Many of you have said that we are strong, but we are not- any strength you see in us is Christ. God provides us with the strength to get up and make it through the day. He is carrying us through this and He gives me enough troubled grace each day to make it through. I will be honest that some days, when I take my eyes off Him, I sink into darkness much like Peter sank in the sea. Pray that Susan, Katherine, Elizabeth and I keep our focus on Christ. We crave heaven now more than ever. Please pray that no weapon formed by the enemy will be successful against our family. I may not have the words to thank you for your prayers today, but I thank God for your kind thoughts and prayers for our family. Also, when you are going through something like this, you don’t always know what to pray for, so please pray for us.
Rebecca is now 10 months old. She is having no purposeful movement as a result of her brain injury and we were told a few weeks ago at the neurology appointment that her beautiful blue eyes are blind. Although she responds to light she has cortical blindness. Her seizures and spasms are still constant, but the medicine numbs her response. We have changed her medicine numerous times, but she is now on Topamax, Clonzopam, Depakote, ammoxicillin and Previcid. Because the seizures and spasms are still present, even on these meds, our neurologist has suggested that we try hormone therapy. This will not heal her, because her injury is permanent and severe; however, it may ease her constant pain. During this treatment she can develop ulcers and her immune system will be greatly compromised. So please pray for her comfort and health and that we will have the strength to make it through this next round of searching for her comfort.
Susan and I are not really sure why this is happening. It is deeply painful to hold a child that is seizing because you know that it is painful, but you cannot help. When I read or talked to her while she was in Susan's womb, she always responded to my voice. She would roll around in mama's tummy when her sisters would read to her. Now, she cannot respond and we don't know if she can even perceive that we are here. There’s nothing you can do to stop the neurons from short circuiting around the dead cells in her brain, the unwanted contractions of muscles and the failure of other muscles to rest or respond. It is also painful, because Rebecca does not smile, laugh, giggle, coo, reach for you or do anything else that her sisters did when they were young. She most likely will never do these things. But I know one day I will walk with her in heaven and I will not be amazed that she is healed, because we will be in the presence of Christ and He will have our full attention. God is good and His love is everlasting. I worry now less about where my girls will go to college; I worry more about where they will spend eternity. Where will you be in 500 years? Take a minute and reflect, what are you doing today that will count 500 years from now.
In the last ten months, I have read just about every textbook on pediatric neurology, obstetrics and gynecology, infant brain injuries, nursing text and manuals, fetal heart monitors, placentas and seizure disorders. I thank all my friends who are nurses and doctors who have helped us understand what happened to Rebecca during birth. She was perfect in the womb. If you’re about to have a baby, I urge you to read about the birthing process and study it. Do not be afraid to ask questions and Dads you must thoroughly interview the person who will take care of your wife. Also, there really is no protocol for resuscitation of a baby, one doctor told us that he would not have resuscitated Rebecca after five minutes without a heartbeat; Rebecca did not have a heartbeat until fifteen minutes after delivery yet resuscitation continued. The doctor won’t ask you about your preference, you must tell them. Most want to see if they can save a life, not if they should save a life. I have not found a neurologists yet that would tell me that Rebecca would have a good outcome with a 0 Apgar score at 10+ minutes. Susan had a peace when Rebecca was delivered, she knew Rebecca was dead, and was content with her being in heaven. Even though she has a doctorate in child psychology and understood severe brain injuries, she was not asked what her wishes were for Rebecca at 3 minutes, 5 minutes, 7 minutes, 10 minutes, 12 minutes or 15 minutes. So, please take a minute to talk to your OB about the worst-case scenario and educate yourself on their protocols. Any uneasiness in discussing this before hand, pales in comparison to the pain of living with a decision made without your input and according to a protocol established by people who don’t believe in heaven or hell.
If you are short on time and don’t have an OB, call a labor and delivery nurse and ask them who their OB is. If you ask for a suggestion of a good OB, they will usually tell you someone that they are associated with. So always ask them, “Who is your OB?” It is amazing how the answer will change when you change the questions asked.
Also, video the process. When I was growing up, I loved to hear my mom and dad talk about the day I was born. They talked about not knowing if I would be a boy or girl and how the swinging doors almost hit dad. So with my girls, I always placed a video camera in the room on a shelf and let it run, just so they would have an unedited memory of their birth.
I did not know until a few weeks after Rebecca was born that Susan was so close to death- she lost so much blood that she could have passed away. I thank God each day that Susan is still here; by all accounts she should have died. I shudder to think what our family would be like without Susan. It is a blessing and a miracle from God that she is alive.
I also wanted to post this picture. I snapped it last night when Susan was not aware. Most of the pictures that we have are posed for, so this is a picture of our daily life. Susan feeds Rebecca and this takes quite sometime, because Rebecca’s seizures disrupt feedings; however, she is still able to take a bottle. Rebecca is not asleep; she just has no control over her muscles. So she is either limp or experiences random contractions of different muscle groups. Daily life is horrible in a situation like this. Luckily, God gives us enough anesthetic to numb the pain, but no so much that we cannot experience suffering and draw closer to Him. He is faithful to his promise to transform us if we are willing to seek Him; however, conforming to the sadness in this world is a daily struggle.
Rebecca’s head circumference has not changed in several months. This is a major concern because it means the brain was so damaged that it has stopped growing; this is common in babies who go without oxygen for longer periods of time. Also, she has certain muscle groups that stay contracted constantly, so the complimentary muscle groups do not flex and therefore don’t grow. I did not comprehend the severity of this until we were at Children’s Medical Center in Dallas last year. Our doctor asked if we were having trouble changing her diaper because of her muscle contractions in her legs. I told her that we could massage her legs and she would eventually relax so that we could change her diaper and wipe her. Then she said we should always take the time during a diaper change to perform a few basic physical therapy steps with legs and hips. I gave a puzzled look and she said, “This will make it easier when you are changing her diapers when she is six or seven, sometimes the contractions make it to where you cannot open the hips to change the diaper and that can be problematic.” I am glad God was with me that day. It was His strength that kept me from falling to the ground and weeping. After all we had been through, I thought nothing could surprise me, but this did. This statement seemed so matter of fact to the doctor. It had not been revealed to me that she would never stop using diapers. I knew she was going to miss out on a lot of things, but I didn’t realize that she would not advance at all. In responding to the overwhelming crisis, I had really not looked that far down the road. Susan, because of her occupation had known for a longtime what the long term outcome would be. This was a long, quiet ride home.
Good news: God is still in control.
1. Susan had to resign from her job as Associate Professor at LSU Health Science Center. I asked her to pray about it and it was hard, but she decided to resign and give up her position so she could continue to be with Rebecca full time. So, we were going to eventually lose our health insurance. My concern was health insurance for Rebecca, as I could not find anyone to insure our family. A few days after she resigned, I received a call that a Judgeship was opening at the workers’ compensation court. I applied and was hired! The insurance is with the same company that Susan had at LSU! Lesson: Turn it over to God, take a step in faith and He will provide.
2. I was working two jobs and Susan was taking care of Rebecca around the clock. This was wearing her out mentally and physically and we had no time to share with each other or Katherine and Elizabeth. I wanted to help her get through this, so several months ago I started calling around. I called several nurse staffing places and could not find anyone to return a call to even offer a few hours of help during the day giving medicine or letting Susan rest while I was at work. Back in July, God placed a man in our hospital room one day who came to comfort us and told us a story of his grandson and a special nanny who was taking care of him. Months later, I bought a paper (I always read it online.) I began reading and noticed a child had passed away. It was the man’s grandson. I prayed about it and asked Susan to call him to inquire about the nanny. God put it on my heart to have her call, even though it was awkward. He immediately called back and said that he had been hoping for her to find a good job with a good family because she has been such a blessing to his family. He remembered visiting with us and referred her to us. So she came by and introduced herself. She has over thirty years experience working with terminal and special needs children. She lives within a mile of our house. She loves Rebecca and has only been with us a week, but she is an angel from heaven. Lesson: God is not bound by time, He sees your whole life at the same time and He will put people in your path to bless you when it is most beneficial to you. Also, obeying God usually makes you feel awkward, or different from the world, so if it seems awkward, then God is more than likely a part of it.
3. We talk to God more about things that really matter. For some reason, I cannot go to God anymore with certain prayer requests. I can only ask for Him to guide me and carry me.
Once again, thank you all for your prayers and kind words. Please continue to pray for us over these next few weeks as Rebecca goes through hormone therapy. Please pray that we will welcome God’s will.
God Bless you all.
Rebecca is now 10 months old. She is having no purposeful movement as a result of her brain injury and we were told a few weeks ago at the neurology appointment that her beautiful blue eyes are blind. Although she responds to light she has cortical blindness. Her seizures and spasms are still constant, but the medicine numbs her response. We have changed her medicine numerous times, but she is now on Topamax, Clonzopam, Depakote, ammoxicillin and Previcid. Because the seizures and spasms are still present, even on these meds, our neurologist has suggested that we try hormone therapy. This will not heal her, because her injury is permanent and severe; however, it may ease her constant pain. During this treatment she can develop ulcers and her immune system will be greatly compromised. So please pray for her comfort and health and that we will have the strength to make it through this next round of searching for her comfort.
Susan and I are not really sure why this is happening. It is deeply painful to hold a child that is seizing because you know that it is painful, but you cannot help. When I read or talked to her while she was in Susan's womb, she always responded to my voice. She would roll around in mama's tummy when her sisters would read to her. Now, she cannot respond and we don't know if she can even perceive that we are here. There’s nothing you can do to stop the neurons from short circuiting around the dead cells in her brain, the unwanted contractions of muscles and the failure of other muscles to rest or respond. It is also painful, because Rebecca does not smile, laugh, giggle, coo, reach for you or do anything else that her sisters did when they were young. She most likely will never do these things. But I know one day I will walk with her in heaven and I will not be amazed that she is healed, because we will be in the presence of Christ and He will have our full attention. God is good and His love is everlasting. I worry now less about where my girls will go to college; I worry more about where they will spend eternity. Where will you be in 500 years? Take a minute and reflect, what are you doing today that will count 500 years from now.
In the last ten months, I have read just about every textbook on pediatric neurology, obstetrics and gynecology, infant brain injuries, nursing text and manuals, fetal heart monitors, placentas and seizure disorders. I thank all my friends who are nurses and doctors who have helped us understand what happened to Rebecca during birth. She was perfect in the womb. If you’re about to have a baby, I urge you to read about the birthing process and study it. Do not be afraid to ask questions and Dads you must thoroughly interview the person who will take care of your wife. Also, there really is no protocol for resuscitation of a baby, one doctor told us that he would not have resuscitated Rebecca after five minutes without a heartbeat; Rebecca did not have a heartbeat until fifteen minutes after delivery yet resuscitation continued. The doctor won’t ask you about your preference, you must tell them. Most want to see if they can save a life, not if they should save a life. I have not found a neurologists yet that would tell me that Rebecca would have a good outcome with a 0 Apgar score at 10+ minutes. Susan had a peace when Rebecca was delivered, she knew Rebecca was dead, and was content with her being in heaven. Even though she has a doctorate in child psychology and understood severe brain injuries, she was not asked what her wishes were for Rebecca at 3 minutes, 5 minutes, 7 minutes, 10 minutes, 12 minutes or 15 minutes. So, please take a minute to talk to your OB about the worst-case scenario and educate yourself on their protocols. Any uneasiness in discussing this before hand, pales in comparison to the pain of living with a decision made without your input and according to a protocol established by people who don’t believe in heaven or hell.
If you are short on time and don’t have an OB, call a labor and delivery nurse and ask them who their OB is. If you ask for a suggestion of a good OB, they will usually tell you someone that they are associated with. So always ask them, “Who is your OB?” It is amazing how the answer will change when you change the questions asked.
Also, video the process. When I was growing up, I loved to hear my mom and dad talk about the day I was born. They talked about not knowing if I would be a boy or girl and how the swinging doors almost hit dad. So with my girls, I always placed a video camera in the room on a shelf and let it run, just so they would have an unedited memory of their birth.
I did not know until a few weeks after Rebecca was born that Susan was so close to death- she lost so much blood that she could have passed away. I thank God each day that Susan is still here; by all accounts she should have died. I shudder to think what our family would be like without Susan. It is a blessing and a miracle from God that she is alive.
I also wanted to post this picture. I snapped it last night when Susan was not aware. Most of the pictures that we have are posed for, so this is a picture of our daily life. Susan feeds Rebecca and this takes quite sometime, because Rebecca’s seizures disrupt feedings; however, she is still able to take a bottle. Rebecca is not asleep; she just has no control over her muscles. So she is either limp or experiences random contractions of different muscle groups. Daily life is horrible in a situation like this. Luckily, God gives us enough anesthetic to numb the pain, but no so much that we cannot experience suffering and draw closer to Him. He is faithful to his promise to transform us if we are willing to seek Him; however, conforming to the sadness in this world is a daily struggle.
Rebecca’s head circumference has not changed in several months. This is a major concern because it means the brain was so damaged that it has stopped growing; this is common in babies who go without oxygen for longer periods of time. Also, she has certain muscle groups that stay contracted constantly, so the complimentary muscle groups do not flex and therefore don’t grow. I did not comprehend the severity of this until we were at Children’s Medical Center in Dallas last year. Our doctor asked if we were having trouble changing her diaper because of her muscle contractions in her legs. I told her that we could massage her legs and she would eventually relax so that we could change her diaper and wipe her. Then she said we should always take the time during a diaper change to perform a few basic physical therapy steps with legs and hips. I gave a puzzled look and she said, “This will make it easier when you are changing her diapers when she is six or seven, sometimes the contractions make it to where you cannot open the hips to change the diaper and that can be problematic.” I am glad God was with me that day. It was His strength that kept me from falling to the ground and weeping. After all we had been through, I thought nothing could surprise me, but this did. This statement seemed so matter of fact to the doctor. It had not been revealed to me that she would never stop using diapers. I knew she was going to miss out on a lot of things, but I didn’t realize that she would not advance at all. In responding to the overwhelming crisis, I had really not looked that far down the road. Susan, because of her occupation had known for a longtime what the long term outcome would be. This was a long, quiet ride home.
Good news: God is still in control.
1. Susan had to resign from her job as Associate Professor at LSU Health Science Center. I asked her to pray about it and it was hard, but she decided to resign and give up her position so she could continue to be with Rebecca full time. So, we were going to eventually lose our health insurance. My concern was health insurance for Rebecca, as I could not find anyone to insure our family. A few days after she resigned, I received a call that a Judgeship was opening at the workers’ compensation court. I applied and was hired! The insurance is with the same company that Susan had at LSU! Lesson: Turn it over to God, take a step in faith and He will provide.
2. I was working two jobs and Susan was taking care of Rebecca around the clock. This was wearing her out mentally and physically and we had no time to share with each other or Katherine and Elizabeth. I wanted to help her get through this, so several months ago I started calling around. I called several nurse staffing places and could not find anyone to return a call to even offer a few hours of help during the day giving medicine or letting Susan rest while I was at work. Back in July, God placed a man in our hospital room one day who came to comfort us and told us a story of his grandson and a special nanny who was taking care of him. Months later, I bought a paper (I always read it online.) I began reading and noticed a child had passed away. It was the man’s grandson. I prayed about it and asked Susan to call him to inquire about the nanny. God put it on my heart to have her call, even though it was awkward. He immediately called back and said that he had been hoping for her to find a good job with a good family because she has been such a blessing to his family. He remembered visiting with us and referred her to us. So she came by and introduced herself. She has over thirty years experience working with terminal and special needs children. She lives within a mile of our house. She loves Rebecca and has only been with us a week, but she is an angel from heaven. Lesson: God is not bound by time, He sees your whole life at the same time and He will put people in your path to bless you when it is most beneficial to you. Also, obeying God usually makes you feel awkward, or different from the world, so if it seems awkward, then God is more than likely a part of it.
3. We talk to God more about things that really matter. For some reason, I cannot go to God anymore with certain prayer requests. I can only ask for Him to guide me and carry me.
Once again, thank you all for your prayers and kind words. Please continue to pray for us over these next few weeks as Rebecca goes through hormone therapy. Please pray that we will welcome God’s will.
God Bless you all.
