- The ability to predict now (at 20 weeks of pregnancy) how Baby Girl will do once she's born is very poor. There are some studies with indicators and ratios and markers, but the bottom line is until she starts trying to breathe air and we can see how she does with that, we will not know exactly where we fall on the very wide spectrum of CDH (Congenital Diaphragmatic Hernia).
- The problem with her condition is not so much the mechanical, physical issue of the diaphragm hole and the misplaced organs (although that will certainly have to be addressed). The problem is pulmonary hypertension (blood pressure in lungs). We are praying that her pulmonary hypertension after birth is not severe and that she will be able to receive the treatments that are available to her and respond favorably to them.
- Doctors' thinking about CDH has changed in the last 15 years. It is now not so much about fixing the hole immediately as it is about stabilizing the baby, seeing how she responds to treatments for pulmonary hypertension and then repairing the hernia.
- A "last resort" treatments for infants with pulmonary hypertension is ECMO (extracorporeal membrane oxygenation). Brenner's is one of the few places in the state that does ECMO so they see a lot (relatively) of CDH cases, approximately ten a year. His rough estimate of the CDH cases at Brenner's is that about 3-4 of those 10 go on ECMO and about half of those babies will survive. Therefore, Brenner's overall survival rate for CDH is around 70-80% (these are rough estimates, not necessarily statistically accurate numbers.) The national survival rate for CDH is between 50-65%.
- The range of stay in the NICU (or PICU if ECMO is required) is anywhere from one month to seven or eight months.
- The surgery is done one of two ways. If there is enough diaphragmatic muscle, they will try to close the hole by stitching muscle to muscle. If not, they will "patch" the hole which may require additional surgery down the road as the baby (and her diaphragm) grows. The incision is below her ribs. They hope to be able to do the surgery within a week after she is born, although that may be a little longer if she ends up having to go on ECMO.
- We looked at the MRI films again. The surgeon said that her right lung looked "normal". While the radiologist noted that there was no left lung present, Dr. Petty also said that he thought there probably was a little bit on the left side as well. While this is certainly good news (and we will continue to pray that she is able to develop as much healthy lung tissue as possible), he also said that the size of the lung was not necessarily an indicator of how successful the baby would be. The greatest indicator is the pulmonary hypertension (which we won't know the details of until she is born and begins breathing air.)
November 9, 2010
The Surgeon's Report
Yesterday we met with Dr. John Petty, one of the three pediatric surgeons at Brenner Children's Hopsital (Baptist Hopital) where Baby Girl Hardy will be transferred after delivery and stabilization. First of all, let me say how wonderful all the doctors that we have worked with are. We have been truly impressed by not only the professionalism and knowledge of these doctors, but their overwhelming care and concern for us as people and as parents. We are so very very grateful that we live where we do and that we are receiving and will continue to receive such a high standard of care. Dr. Petty, much like Dr. O'Shea on Friday, spent over an hour talking with us about Baby Girl's condition and explaining to us the things that we can expect after she's born. Much of what he said we had heard before, but it was great to hear it confirmed by another doctor. We feel like we are being so well prepared for the struggles and trials that we will all face together as a family once she joins us. Here are some bullet points from our conversation with him. We share these specifics so that you can better understand where we are, but also so that you will know ways to pray specifically for Baby Girl's health in the months ahead.
November 7, 2010
Grandparents
As we have grappled with sadness and confusion this week we have also found many, many blessings and small miracles in this difficult time. I know that it is God's grace that allows us to find any positive things during dark times. As I've mentioned before one of the greatest of these has been the love, support and prayers poured out on us by both friends and strangers. Another is our parents.
This was a time when we felt especially blessed to live near my parents. When we left our appointment on Tuesday with the worst news of the week we drove straight to their house and fell into their arms. Throughout the week, as we learned more information or had last minute appointments scheduled they dropped anything they were doing at the last minute to join us, listen to us, and stand by our side. My mom brought us dinner (which I ate three or four bites of before promptly throwing up), but her presence and intentions nourished us more than the food itself. They were every bit as heartbroken as we were - or more - but stayed strong for us throughout the week.
Robert's parents live in Georgia, but after work on Friday they drove four hours to see us, hug us, and be near us. His mom cooked for us all day on Saturday and filled our freezer with meals for the weeks to come. They were only here 24 hours, but in that time they were able to comfort us and restore us like only parents can. I am so very thankful for my in-laws.
We are beginning to understand what parents' love for their child is like. As much as we already love Baby Girl Hardy and yearn for only good things for her, our parents somehow love us even more. They've had nearly thirty years to practice it. We are so fortunate to have good examples of marriage and of parenting in our parents and are grateful for the close, positive and healthy adult relationships we cherish with them now. Just as this week has brought Robert and me closer together it has also strengthened our bonds with our parents. This is one of those small little blessings.
Baby Girl Hardy is going to be so lucky to have these four grandparents doting on her and loving her like only grandparents can. And we are daily counting them among our many blessings.
This was a time when we felt especially blessed to live near my parents. When we left our appointment on Tuesday with the worst news of the week we drove straight to their house and fell into their arms. Throughout the week, as we learned more information or had last minute appointments scheduled they dropped anything they were doing at the last minute to join us, listen to us, and stand by our side. My mom brought us dinner (which I ate three or four bites of before promptly throwing up), but her presence and intentions nourished us more than the food itself. They were every bit as heartbroken as we were - or more - but stayed strong for us throughout the week.
Robert's parents live in Georgia, but after work on Friday they drove four hours to see us, hug us, and be near us. His mom cooked for us all day on Saturday and filled our freezer with meals for the weeks to come. They were only here 24 hours, but in that time they were able to comfort us and restore us like only parents can. I am so very thankful for my in-laws.
We are beginning to understand what parents' love for their child is like. As much as we already love Baby Girl Hardy and yearn for only good things for her, our parents somehow love us even more. They've had nearly thirty years to practice it. We are so fortunate to have good examples of marriage and of parenting in our parents and are grateful for the close, positive and healthy adult relationships we cherish with them now. Just as this week has brought Robert and me closer together it has also strengthened our bonds with our parents. This is one of those small little blessings.
Baby Girl Hardy is going to be so lucky to have these four grandparents doting on her and loving her like only grandparents can. And we are daily counting them among our many blessings.
Big Daddy, Mama K, Sweet Mama, and Daddy Bob
November 6, 2010
The Crib
We ordered the crib for Baby Hardy's room before our first 18 week ultrasound on October 28. It arrived on Monday before our 2nd ultrasound when we first received the scary news about Baby Hardy's future. It sat in the box all week while we just stared at it, unsure of its future or our baby's.
Today we opened the box and put the crib together.
It was a more significant experience and ritual than putting a crib together should have been, but to us it represents so much.
It is a tangible sign of the hope that we have for Baby Girl coming home and sleeping here. It represents our belief that she will be here, alive and healthy and able to make this her home. It is a reminder to us to pray for her each day between now and then and trust in God's ability to create her wholly and provide for her needs as well as ours. It is a bold statement that we intend for her to join us here on earth.
With each screw that Robert added or piece that was put together it felt to me almost like we were putting her together, physically creating a space that will be just for her.
Baby Girl, we're getting ready for you.
This is the fabric and these are the colors that will brighten your room the way that you will brighten our lives.
We're not done getting this nursery ready, we're not done preparing our hearts for you, we're not done praying for you. But we're beginning all these things and we'll continue until you have safely made your home right here.
We love you.
November 5, 2010
Second Chances
You have prayed. God has listened. We have been blessed.
On Tuesday we thought that our Baby Girl had almost no chance of living. It sounded like it was likely that she had a fatal chromosomal disorder and that even if she didn't, that her herniated diaphragm was severe enough that surgery wouldn't help. We spent two and half days in the depths of despair, mourning and grieving and trying to make sense of the incomprehensible. We have had more tests and talked to more specialists than we could have imagined. We have heard words and phrases that we wish we'd never had to hear. We have asked questions that are heartbreaking and had conversations that we would wish on no one. And through it all we have pleaded with God and begged for mercy. Our friends and family across the country have extended love and support and prayers when we couldn't find the words ourselves. There are countless strangers who have added us to their prayer lists and hurt and grieved with us, without even knowing us.
Today we received several pieces of good news. The results of our amniocentesis came back and confirmed that Baby Girl's chromosomes are normal. Robert and I were sitting together in the nursery when we got the news and both burst into tears - the first tears of joy we've cried in many many days of tears. The chromosomal syndromes that we were anticipating would have meant a clear death sentence for her, and this was the first window of light and hope that we had heard. We then met with a neonatologist to discuss the details of her diaphragmatic hernia. This is still a very severe and potentially life-threatening condition. However, he also had encouraging news for us. The MRI yesterday revealed two pieces of good news: the liver and spleen are not in her chest cavity (although all of the stomach and much of the bowel are) and her right lung showed "a surprisingly significant amount of lung tissue." The left lung has no significant lung tissue because of the herniation. However, given this information, we know that Baby Girl Hardy has a new chance at life.
Her delivery will not be picture-perfect. She will be intubated and ventilated immediately and stabilized at Forsyth Hospital's NICU before being transferred to Baptist Hospital for surgery. There are many complications that can arise, but we are prayerful for the best case scenario - surgery to repair the diaphragm followed by several weeks of hospitalized recovery. We are adjusting our expectations of our first few months of her life, but giddy with excitement about the fact that we can now imagine her life here with us.
There are more details, of course, but that's the big picture. We stand in awe of this answered prayer for miracles and will take one day at a time from here. We are experiencing relief and thankfulness while recognizing that we still stand in serious need of more prayer. We share this with you so that you may rejoice alongside us and be encouraged by your answered prayers, but also so that you will not stop praying. We have 20 more weeks until delivery and are begging that you pray for her every day between now and then. We will list more specifics here as the weeks go by and ask for specific prayers for many of the details. If you subscribe to an RSS feed, we ask that you add our blog to that, or if you would like for us to add you to an email list to remind you to pray (and give specifics to pray for) we would be glad to do that as well. If you have prayer lists at your church or among your communities we ask you to please add us to them. We recognize that the news we have heard today is not by accident or chance and that we must remain prostrate before our Lord for further miracles in her life.
Today we feel that, more than anything, we have been given a second chance. Baby Girl has been given an opportunity to experience life and we have been given a chance to stand as a testament to the powerful work of a loving and merciful God. Thank you again so deeply for your prayers and your love. They have sustained us and will continue to do so.
We bought these flowers for Baby Girl tonight and put them in her nursery as a reminder to us of the life ahead of her.
On Tuesday we thought that our Baby Girl had almost no chance of living. It sounded like it was likely that she had a fatal chromosomal disorder and that even if she didn't, that her herniated diaphragm was severe enough that surgery wouldn't help. We spent two and half days in the depths of despair, mourning and grieving and trying to make sense of the incomprehensible. We have had more tests and talked to more specialists than we could have imagined. We have heard words and phrases that we wish we'd never had to hear. We have asked questions that are heartbreaking and had conversations that we would wish on no one. And through it all we have pleaded with God and begged for mercy. Our friends and family across the country have extended love and support and prayers when we couldn't find the words ourselves. There are countless strangers who have added us to their prayer lists and hurt and grieved with us, without even knowing us.
Today we received several pieces of good news. The results of our amniocentesis came back and confirmed that Baby Girl's chromosomes are normal. Robert and I were sitting together in the nursery when we got the news and both burst into tears - the first tears of joy we've cried in many many days of tears. The chromosomal syndromes that we were anticipating would have meant a clear death sentence for her, and this was the first window of light and hope that we had heard. We then met with a neonatologist to discuss the details of her diaphragmatic hernia. This is still a very severe and potentially life-threatening condition. However, he also had encouraging news for us. The MRI yesterday revealed two pieces of good news: the liver and spleen are not in her chest cavity (although all of the stomach and much of the bowel are) and her right lung showed "a surprisingly significant amount of lung tissue." The left lung has no significant lung tissue because of the herniation. However, given this information, we know that Baby Girl Hardy has a new chance at life.
Her delivery will not be picture-perfect. She will be intubated and ventilated immediately and stabilized at Forsyth Hospital's NICU before being transferred to Baptist Hospital for surgery. There are many complications that can arise, but we are prayerful for the best case scenario - surgery to repair the diaphragm followed by several weeks of hospitalized recovery. We are adjusting our expectations of our first few months of her life, but giddy with excitement about the fact that we can now imagine her life here with us.
There are more details, of course, but that's the big picture. We stand in awe of this answered prayer for miracles and will take one day at a time from here. We are experiencing relief and thankfulness while recognizing that we still stand in serious need of more prayer. We share this with you so that you may rejoice alongside us and be encouraged by your answered prayers, but also so that you will not stop praying. We have 20 more weeks until delivery and are begging that you pray for her every day between now and then. We will list more specifics here as the weeks go by and ask for specific prayers for many of the details. If you subscribe to an RSS feed, we ask that you add our blog to that, or if you would like for us to add you to an email list to remind you to pray (and give specifics to pray for) we would be glad to do that as well. If you have prayer lists at your church or among your communities we ask you to please add us to them. We recognize that the news we have heard today is not by accident or chance and that we must remain prostrate before our Lord for further miracles in her life.
Today we feel that, more than anything, we have been given a second chance. Baby Girl has been given an opportunity to experience life and we have been given a chance to stand as a testament to the powerful work of a loving and merciful God. Thank you again so deeply for your prayers and your love. They have sustained us and will continue to do so.
We bought these flowers for Baby Girl tonight and put them in her nursery as a reminder to us of the life ahead of her.November 4, 2010
Waiting
I know that you are all wondering what the update is and what is going on with us. Honestly, we don't have much of one. We've cried more tears, experienced deeper sadness and grief and grappled with more difficult questions the past few days than ever before in our lives. We have clung to each other with desperation and fear and our young marriage has been tested and found to be stronger than even we could have imagined. We have been surrounded and affirmed by friends and community far and wide and have savored each word of the emails, voice messages, text messages and more that have been sent our way. Your love for us is humbling and empowering and we are so very grateful for it.
We have had several more tests this week in an attempt to gather information and are awaiting results from those. Our doctors, especially Kerri Scherer - both friend and OBGYN, have moved mountains to get us in to see the right people in the right time. We've asked a million questions and have tried our best to sort through the answers amidst our emotional fog and grief.
We cling to hope, although we recognize that it takes on many forms and we continue to pray for miracles, even as we experience small ones each hour of every day now. Even in the midst of such a crisis we are able to count our many blessings and the ways that our God is caring for us and providing for us. Our lives have been forever changed this week and we will never see the world through the same lens again.
I wanted to post tonight to say thank you to all of you who have shared your many expressions of love and concern. Each one of them has touched us and moved us - more than you can even imagine. I have heard that many of you are checking the blog, waiting for an update. Right now we're just waiting too. We'll share more as this all unfolds before us. In the meantime, keep praying for us, encouraging us and supporting us and know that we are deeply grateful.
We have had several more tests this week in an attempt to gather information and are awaiting results from those. Our doctors, especially Kerri Scherer - both friend and OBGYN, have moved mountains to get us in to see the right people in the right time. We've asked a million questions and have tried our best to sort through the answers amidst our emotional fog and grief.
We cling to hope, although we recognize that it takes on many forms and we continue to pray for miracles, even as we experience small ones each hour of every day now. Even in the midst of such a crisis we are able to count our many blessings and the ways that our God is caring for us and providing for us. Our lives have been forever changed this week and we will never see the world through the same lens again.
I wanted to post tonight to say thank you to all of you who have shared your many expressions of love and concern. Each one of them has touched us and moved us - more than you can even imagine. I have heard that many of you are checking the blog, waiting for an update. Right now we're just waiting too. We'll share more as this all unfolds before us. In the meantime, keep praying for us, encouraging us and supporting us and know that we are deeply grateful.
November 2, 2010
Pray for Miracles
Today's news was bad. In fact, it was about as bad as we could have expected for today.
The baby does have a severe diaphragmatic hernia. It appeared from today's ultrasound that it is so severe that the entire stomach is in her chest cavity, leaving no room for her lungs to develop. The misplaced stomach has also displaced her heart, which is another concern.
The doctors also saw two other indicators or markers that lead them to believe that there is a good chance that the herniated diaphragm is not isolated but part of a greater chromosomal syndrome or disorder. Two such disorders that are a possibility are trisomy 13 and trisomy 18; these are both fatal.
Regardless, it seems from today's results that our baby's chances of life are slim. Even if we find it is not a chromosomal disorder she still may not survive the hernia because of its severity and the lungs' inability to develop properly.
We are reeling from the news. It's hard to believe how much we already love her and how much our hearts are breaking.
We know we serve a God who is loving and just. We do not understand what is happening or why right now, but we cannot lose faith and hope. We ask you to join us in praying for a miracle. A miracle is what we need. We also ask for your love and support and comfort as we grieve and cope and try to figure out how to react and respond to all of this news. She needs a miracle for a chance at life and we need a miracle to find peace in such hard times.
We will have an MRI next week to determine more precisely the extent of the hernia. We are also scheduling an echo-cardiogram to have a closer look at the baby's heart and its function. We will likely have an amniocentesis further into the pregnancy to learn details of any chromosomal disorder that may be present. We will also meet with a genetic counselor.
We will update more as we learn more and as we continue processing all of these emotions. We are not answering many phone calls and may not return your emails, but please know how meaningful they are to us. We are deeply grateful for your many varied expressions of love, support, and shared sadness to us. Your encouragement and your prayers, not only for Baby but for us, are what is carrying us right now.
Pray for miracles. Big and small. We are.
The baby does have a severe diaphragmatic hernia. It appeared from today's ultrasound that it is so severe that the entire stomach is in her chest cavity, leaving no room for her lungs to develop. The misplaced stomach has also displaced her heart, which is another concern.
The doctors also saw two other indicators or markers that lead them to believe that there is a good chance that the herniated diaphragm is not isolated but part of a greater chromosomal syndrome or disorder. Two such disorders that are a possibility are trisomy 13 and trisomy 18; these are both fatal.
Regardless, it seems from today's results that our baby's chances of life are slim. Even if we find it is not a chromosomal disorder she still may not survive the hernia because of its severity and the lungs' inability to develop properly.
We are reeling from the news. It's hard to believe how much we already love her and how much our hearts are breaking.
We know we serve a God who is loving and just. We do not understand what is happening or why right now, but we cannot lose faith and hope. We ask you to join us in praying for a miracle. A miracle is what we need. We also ask for your love and support and comfort as we grieve and cope and try to figure out how to react and respond to all of this news. She needs a miracle for a chance at life and we need a miracle to find peace in such hard times.
We will have an MRI next week to determine more precisely the extent of the hernia. We are also scheduling an echo-cardiogram to have a closer look at the baby's heart and its function. We will likely have an amniocentesis further into the pregnancy to learn details of any chromosomal disorder that may be present. We will also meet with a genetic counselor.
We will update more as we learn more and as we continue processing all of these emotions. We are not answering many phone calls and may not return your emails, but please know how meaningful they are to us. We are deeply grateful for your many varied expressions of love, support, and shared sadness to us. Your encouragement and your prayers, not only for Baby but for us, are what is carrying us right now.
Pray for miracles. Big and small. We are.
November 1, 2010
Prayers for Baby Girl
Just a reminder (in case anyone is out there reading this blog) that tomorrow we have our appointment with the perinatologist who will do a very careful ultrasound to determine more about the health and status of Baby Girl Hardy. There is still a small possibility that what was detected last Thursday was nothing and that she will get a completely clear bill of health. This is our fervent prayer. It is likely that she does have a herniated diaphragm. If this is the case, the doctors should be able to tell us more about it (size, location, severity, etc.) to help us understand better what is ahead of us and her. Our appointment is at 2:45 and we truly appreciate your prayers tomorrow for her wholeness. We will post again on this blog tomorrow with another update.
We are doing okay and are grateful to the many of you who send words of encouragement, love, compassion and your thoughts and prayers. Robert is the rock of this family right now and I grow more deeply in love with him each day for the many ways he is supporting and caring for me right now. I am emotional. Some of it is pregnancy and some of it is those motherly instincts that can't seem to turn off the worry for my child. It was difficult to go back to school today and try to be normal when I feel so far from it. In many ways, I felt separated today - like part of me was just watching the other me teaching and wondering what in the world I was doing during such a crisis. However, I'm grateful for this job not only for the many ways it rewards me and teaches me each day, but for the distraction that it is from my own thoughts.
Thanks again for your love and support and please pray for us tomorrow.
Much love,
The Hardys
We are doing okay and are grateful to the many of you who send words of encouragement, love, compassion and your thoughts and prayers. Robert is the rock of this family right now and I grow more deeply in love with him each day for the many ways he is supporting and caring for me right now. I am emotional. Some of it is pregnancy and some of it is those motherly instincts that can't seem to turn off the worry for my child. It was difficult to go back to school today and try to be normal when I feel so far from it. In many ways, I felt separated today - like part of me was just watching the other me teaching and wondering what in the world I was doing during such a crisis. However, I'm grateful for this job not only for the many ways it rewards me and teaches me each day, but for the distraction that it is from my own thoughts.
Thanks again for your love and support and please pray for us tomorrow.
Much love,
The Hardys
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