Baby boy,
You are in your first surgery, and
I can't explain the pain I feel knowing there is nothing I can do and knowing I can not take your place and knowing how much pain and suffering you are enduring.
I'm suppose to be able to kiss you and make it better, but I am helpless.
I love you more than any words could ever express; more than you will ever know. You are my little angel, my miracle! I need you to fight and get better for us. I could never imagine a world without you in it because you have brightened mine so much. Baby boy my life started when you were born. You are so beautiful and your father and I love you so much. We want you to grow and get strong. We will be here when you are sad, we will be here when you are hurt; through the good times, bad and all the in betweens. We will support you and always encourage you to chase your dreams. We will fail at times and disappoint you at times, but it never means we don't love you with all that we are. You are very special and you are extraordinary. I wish I could give you my heart to make yours whole because after all the day you were born is when mine became whole.
I love you my sweet little superman. We as a family will get through this.
With all the love I hold
Your mommy
Friday, November 30, 2012
Monday, November 19, 2012
A mother's heavy heart
I truly believe that God has a plan for my son; however, I have one issue
that has been tearing me apart. In my life I have had nothing, but
supportive parents. No matter what I wanted to do they told me that they
would support me and they always encouraged me to chase my dreams. The
same went for my brother, they never told us we couldn't do something or they
would not back us up. As parents you always want to encourage and support
your children in everything they want to do. You never want to give limitations
because you always want them to strive for the best. This has been
something I have been really struggling with this week. Hunter and I are
both very into sports; hunter plays still and I love watching it. I always
thought that my son would play them. I had dreams of going to his games
and being that overly decked out parent with the buttons and shirts etc.
I never dreamed I would have to tell him no on anything he wanted to
do.
With everything I have read with children with HLHS usually they know when to limit themselves and take a break. It does state that contact sports are not highly looked upon with kids suffering from this heart defect. How does a mother tell her son "you can't do this, you just are not strong enough?" or "you are not like the other kids you have to take it easy?" This especially weighs heavy on my heart because Hunter and I plan on having more children. Having to tell one of your children they can't do something and the other can is gut wrenching for me. I have shed so many tears thinking about how I might have to limit my son and tell him no to a dream he may have. I know God works in mysterious ways; this is just an issue I have been really dealing with. I have been praying he will be really into music or an amazing painter like his aunt, or even a doctor like his uncle and that this will never be an issue. I want him to know that his father and I support him, but we also want to protect him. He not only has a heart issue, but he is our first child. Already I cannot imagine my life without this sweet boy and I will do everything in my power to protect him, but when does that protection become too much. I know I will have a hard time letting go because he will be such a miracle. I read about stories of other children that are able to do things that maybe the doctors have advised against, but then I read the stories of the children that literally are the mold of what the doctors say you can't do. His heart will typically work 3/4 as good as a healthy child's heart after all his surgeries. He will get tired quicker, winded quicker, etc. I really pray I never have to tell my child he just is not strong enough to do something he may really want. I mean seriously; how do you tell your child he can't follow a dream?
With everything I have read with children with HLHS usually they know when to limit themselves and take a break. It does state that contact sports are not highly looked upon with kids suffering from this heart defect. How does a mother tell her son "you can't do this, you just are not strong enough?" or "you are not like the other kids you have to take it easy?" This especially weighs heavy on my heart because Hunter and I plan on having more children. Having to tell one of your children they can't do something and the other can is gut wrenching for me. I have shed so many tears thinking about how I might have to limit my son and tell him no to a dream he may have. I know God works in mysterious ways; this is just an issue I have been really dealing with. I have been praying he will be really into music or an amazing painter like his aunt, or even a doctor like his uncle and that this will never be an issue. I want him to know that his father and I support him, but we also want to protect him. He not only has a heart issue, but he is our first child. Already I cannot imagine my life without this sweet boy and I will do everything in my power to protect him, but when does that protection become too much. I know I will have a hard time letting go because he will be such a miracle. I read about stories of other children that are able to do things that maybe the doctors have advised against, but then I read the stories of the children that literally are the mold of what the doctors say you can't do. His heart will typically work 3/4 as good as a healthy child's heart after all his surgeries. He will get tired quicker, winded quicker, etc. I really pray I never have to tell my child he just is not strong enough to do something he may really want. I mean seriously; how do you tell your child he can't follow a dream?
Sunday, November 18, 2012
Friday, November 16, 2012
Our little superman will make a grand debut
We met with our new hospital, Christiana Hospital, that we will be delivering at. We were pleased with what we saw and how helpful and informative the staff was there. When talking to one of the OB residence we were informed of the different scenarios that will play out for our little superman.
Scenario 1: Best Case
I will arrive at the hospital Monday night, November, 26, to start the induction process. Once checked in, if I am not dilated they will do what is called a Foley Balloon Procedure. This is exactly how it sounds they insert a catheter into my cervix that will balloon and help me to start dilating. Once dilated to a 3 they will then give me Prostaglandin to start my contractions. I am able to get an epidural in the back, but not the one given in the IV due to it going into my blood stream and creating complications for Christian. The less stress on the baby the better, so I will be taking the doctors up on the juice. They expect Christian to make his debut sometime in the afternoon of November 27. We are hoping for a natural vaginal birth. After Christian is born (as long as he shows signs of breathing) he will be placed on my chest for a quick minute while they clean him off. He will then be wheeled to a different part of my room where the NICU staff will be waiting to assess his vitals. If he is showing strong vitals he will then be cleaned up and put in a little ICU "box" and wheeled back for Hunter and I to admire our sweet little love. We will be able to touch him, but not hold him. This is going to be the toughest part, not being able to have that bonding time. As long as he stays stable he will remain at Christiana in the NICU until I am released to go with him up to DuPont. As long as I have shown no complications and have made the necessary progress they will release me within 24 hours of birth. They will then take Christian up to DuPont by ambulance and Hunter and I will meet him up there. His cardiologist team will then decide his open heart surgery date and will go in and do the Norwood procedure within the first week of Christian's life.
Scenario 2:
Everything remains the same up until the vaginal birth. I start to show complications or Christian starts to show stress they will decide that a C-section is necessary. There are 2 different ways this could play out. Depending on the severity of the complications Hunter could be in the room with me or I would be put completely under and Hunter will have to wait in the waiting room. If Christian shows no signs of complications after this birth again he will wait until I am ready to be discharged, anywhere from 24-72 hours. We will then go up to DuPont.
Scenario 3: Worst Case
I have to be put completely under and Christian comes out with complications. In this case they will immediately take him by ambulance to DuPont where Hunter will meet them there. The cardiologist team will assess the necessary steps to proceed and Christian will undergo surgery within the first few hours of life. Even if I have him vaginally there could be complications and he still may be rushed to DuPont and have to get surgery immediately.
We would like everyone to pray that Christian's heart comes out strong and he will be able to hold off on surgery until I am able to be at the same hospital. The doctors seem confident that he is full term and a very good size baby. I am also very healthy and that is playing in our favor.
After Surgery
The first time we see our son directly after birth could be with tubes coming out from everywhere and an incision in his chest. We ask that you pray God will prepare us for this and keep us strong for Christian. He will be in the ICU area until he is stable enough to go into his own room. During this time only 2 ADULTS are allowed at his bed side at all times. The ICU is an open area with other babies, so to insure the best possible care this rule is strictly followed. There will be a room in the hospital or at the Ronald McDonald house that we will be staying at 24/7.
Visiting
We know everyone will be eager to meet our little joy, but we ask you wait until we have been able to breath from this whole ordeal. Christian will be in the hospital for several weeks to possibly even months and we want to make sure he is stable and out of ICU before people start coming to see him. We ask when we have given the OK, if you would like to come up and visit to call us first. We also ask that only adults come. We understand that everyone has children, but this is for the protection of our son. A common cold to a normal child could potentially be life threatening to Christian. Our sole purpose at this point is to protect Christian. We will also be asking you to wash your hands A LOT. Please do not get annoyed with this. If you have any kind of the sniffs please do not come. Although it might be nothing, we do not want to risk it. These rules will also apply when we go home for the first few weeks.
For family and friends out of town that want to visit, unless you are immediate family we ask you hold off until we have gotten in a routine with Christian. We would like him home before people start coming up to visit him.
Gifts
Although we do not expect anything we do know that people will bring things to the hospital for Christian. Things that are not allowed are latex balloons or flowers. Stuffed animals, pictures, books, button down the front onsies are all ok. If they have not been sanitized prior we will take them home and disinfect them before they will be set in with Christian. We understand that this seems like extreme measures, but this is an extreme defect.
We appreciate all the prayers and love we have received and continue to receive. We hope you all understand that this is a serious matter and we are not trying to be hateful with the rules we have established, but that it is purely for the safety of our son. We also realize everyone wants to give us advice; although we welcome your input please understand that this is Hunter and I's child and we will be making the decisions that we feel is best for him and our family.
We are very excited about FINALLY meeting this little miracle. Please just continue to pray God watches over Christian, Hunter, and I as well as guides the doctors during his procedures. We know God is in control of this whole situation.
Wednesday, November 14, 2012
What is Hypoplastic Left Heart Syndrome?
HLHS and The 3 Open Heart Surgeries Explained
What is HLHS?
Hpoplastic Left Heart Syndrome is a Congenital Heart Defect where the left side of the heart is underdeveloped. In Christian's case, the Left Ventricle isn't there or small enough they couldn't see it. The Left Atrium and the Aorta is also smaller. This is causing the oxygen rich blood to mix in the heart with the oxygen depleted blood, causing his body to not get the right amount of oxygen needed.
There are three open heart surgeries that are performed to help separate the oxygen rich blood (red blood) from the oxygen depleted blood (blue blood). The first stage is called the Norwood procedure. In this procedure the doctor will create a "new" Aorta which will be connected to the Right Ventricle. They will also place a tube or shunt from either the Right Ventricle or the Aorta to the pulmonary arteries, which send blood to the lungs to gather oxygen. This will allow his heart to pump blood to his lungs and the rest of his body. It will still be mixing red and blue blood, so the baby may still have a blueish coloring to his body. This surgery is performed in within the first 2 weeks after birth.
The second stage is called the Bidirectional Glenn Shunt or Hemi-Fontan procedure. This one is performed between 4 and 6 months after birth. In this procedure they will take the vein that brings blood from the upper part of the body to the heart and connect it directly to the pulmonary arteries, taking it to get oxygen before it even goes into the heart. This creates less work for the Right Ventricle to perform. Even after this there will still be mixing of red and blue blood in the heart but it will be reduced.
The third stage is called the Fontan procedure. It is perform anywhere between 18 months and 3 years after birth. This procedure takes the vein that returns blood from the lower part of the body to the heart and redirects it also to the pulmonary arteries, going straight to the lungs for oxygen. Once this is completed there will be no more mixing of the red and blue blood in the heart thus removing the blueish coloring from his body.
The day our world turned upside down
Hunter and I had been told we were having a healthy baby boy. All of our test had come back negative and the body scan we had at 20 weeks came back normal. We were so excited to go to our last ultrasound November 12, 2012, to see how much our little man was weighing and determine when he could potentially make his debut. He was weighing in at a whooping 6 lbs. 15 oz., they were able to show us a 4D of our handsome little man. The nurse explained to us that Christian was not cooperating and she was not able to see the parts of the heart she needed to and that she was going to get her colleague that was a genius in getting the difficult heart pictures. Hunter and I became nervous when the other nurse came in and was very quiet during the whole time she was scanning Christian. She said she would go get the doctor and left. Our world came crashing down when the doctor came in with a genetics specialist. They explained that Christian's heart was not normal, but they were unsure of what exactly what was wrong and could only guess by what they were seeing. We were devastated. Why was this happening to us? What did I do to cause this? How did they miss it in the other ultrasounds? We just could not understand. They set up an appointment the next morning with a Pediatrics Cardiologist to do a fetal echocardiogram up in Wilmington, DE at a children's hospital, A. I. Dupont. Needless to say Hunter and I barely slept that night. I prayed the doctor's were wrong and that they had just misread my ultrasound and my baby boy was healthy.
The next morning our worst fears were confirmed. Our son in fact did have a Congenital Heart Defect, Hypoplastic Left Heart Syndrome. I was numb when the doctor was trying to explain to me what all this meant and what the next actions would be for Christian. I was stuck in this awful nightmare and I could not wake up. I had so much anger built up towards other women I felt did not deserve the healthy baby they had been given when I was left here with a baby with a broken heart and I had done everything right. The cardiothoratic surgeon that would be performing Christian's surgery met with us to introduce himself and reassure us. The rest of the day was kind of a blur of tears and emotions. Hunter and I did research and contacted other families that had been through the same thing. I was able to talk through email to a sweet Christian woman that has a daughter with Hypoplastic Right Heart Syndrome. Her story and faith helped me wake up today with a more positive attitude about our situation.
Hunter and I know that this is going to be a very long and hard road ahead for our family. We know it is going to challenge us as individuals, parents, and even as spouses. We know that through all this it will help us grow stronger in our marriage, as parents, and in our faith. We may not understand God's plan when giving us this "hiccup" in our life, but we trust it is for a greater purpose because we know His plan is perfect. We have a wonderful support system through our families, friends, and military family. We ask for prayer and encouragement through this. We know there are going to be rough days, but we also know that God is bigger than this problem and He will never leave us nor forsake us. We know He will be guiding the surgeon's hands on our little Superman's heart because he is the ultimate physician. Our son is going to be so special and be such a testimony to others.
The next morning our worst fears were confirmed. Our son in fact did have a Congenital Heart Defect, Hypoplastic Left Heart Syndrome. I was numb when the doctor was trying to explain to me what all this meant and what the next actions would be for Christian. I was stuck in this awful nightmare and I could not wake up. I had so much anger built up towards other women I felt did not deserve the healthy baby they had been given when I was left here with a baby with a broken heart and I had done everything right. The cardiothoratic surgeon that would be performing Christian's surgery met with us to introduce himself and reassure us. The rest of the day was kind of a blur of tears and emotions. Hunter and I did research and contacted other families that had been through the same thing. I was able to talk through email to a sweet Christian woman that has a daughter with Hypoplastic Right Heart Syndrome. Her story and faith helped me wake up today with a more positive attitude about our situation.
Hunter and I know that this is going to be a very long and hard road ahead for our family. We know it is going to challenge us as individuals, parents, and even as spouses. We know that through all this it will help us grow stronger in our marriage, as parents, and in our faith. We may not understand God's plan when giving us this "hiccup" in our life, but we trust it is for a greater purpose because we know His plan is perfect. We have a wonderful support system through our families, friends, and military family. We ask for prayer and encouragement through this. We know there are going to be rough days, but we also know that God is bigger than this problem and He will never leave us nor forsake us. We know He will be guiding the surgeon's hands on our little Superman's heart because he is the ultimate physician. Our son is going to be so special and be such a testimony to others.
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