I think most of us realize that our society thrives on convenience. For those who know me, you know how nutty I am when it comes making things from scratch. I never seem to take the easy road (which is often the smarter road, mind you)...why not make all the centerpieces for our wedding instead of hiring a florist to do them? And forget frozen chicken fingers, steak fries, chicken broth, and pizza. I'll just make it all to save a few dollars. Canned soup? Whatever, I'll just spend 3 hours making my own batch.
I imagine that many people think that the fact that our daughter died is sort of a relief. It's so much more convenient now that we don't have to live away from home, spend hours lying awake in the hospital. We don't have to worry about wheel chairs, physical therapy, or feeding tubes. But when it comes to your child, none of that matters. No, I can't speak for those parents who have sick or special needs children - they have it hard, and I can't pretend to know what it's like - but I can assure you that they don't think twice about what is "easy". All they care about is their children's health and well-being. I would move to the Sahara Desert if it meant that Bernadette were with us today - convenience just isn't an issue when it comes to your own flesh and blood.
I think that's what our society is missing in a way. We're always so quick to find solutions to a life of happiness and ease, and suffering is avoided at all costs. We're forgetting that suffering only leads to a deeper love for others and appreciation for our lives. I think that's one of the things I love most about my Catholic faith - the idea of redemptive suffering. So much grace flows from the crosses we bear. Souls reach heaven, sick people are healed, the dying are comforted through the pain, sorrow, and sacrifices we make. How beautiful it is that we are all united in that way.
So, please please pray for moms who are faced with the decision to abort their babies because of adverse prenatal diagnoses. They need to know that their children are worth fighting for, and that so much good will come from their lives, however short or long that may be. Taking the easy way out just isn't worth it...when you see that sweet child's face on her birthday, you'll realize that nothing else matters but the love you have for her.
Friday, December 21, 2007
Monday, December 17, 2007
Beautiful in God's Eyes
There's nothing that says Merry Christmas more than being handed your daughter's autopsy report. Sorry for the sarcasm...this just seems so unbelievable at times. It's hard to describe the guilt that I feel as a mother. Bernadette lived within me for 9 months, and I can't understand how and why I couldn't do anything for her. It's crazy how complicated her condition was, yet at the same time, I am angry and hurt that no one told me what a high fatality rate is associated with it. No perinatologist, besides the one I saw the week before her death, suggested that she would die. I'm not sure if they just didn't have a full understanding of her anomalies or what, but I wish I could've been at least a little bit prepared. The report states that she had omphalocele-exstrophy-inperforate anus-spinal defects (OEIS) complex (which I pretty much knew), "which is almost always fatal". I made the mistake of googling OEIS just now, and the first research article that was listed described the postmortem exam of an aborted baby. She was so beautiful, and I guess since I'm so used to seeing photos of exstrophy kids, it was easy to overlook her problems and only see a sweet little baby who died too soon.
So, the autopsy report states that Bernadette's cause of death was due to multiple congenital anomalies. You might be thinking "well, duh", but since almost none of the doctors I spoke to
suggested that she wouldn't live to see her birthday, I was concerned that her death was caused by something like an abrupted placenta or a blood clot in her brain. Something that "just happens". Not that that would've made me feel any better, but as her mom, I felt quite unsettled not knowing how she died. The list of abnormalities is overwhelming, although most of them we already knew. However, I didn't realize that she was missing a gall bladder or that there were anomalies in her thoracic spine. Or that her liver had an extra lobe. She did have 2 ovaries and fallopian tubes, and her uterus was split in two. Her kidneys, pancreas, lungs, stomach, heart, and brain looked beautiful.
No matter how emotional this is for me, no matter how much my heart aches when I look down at this 8 page report or when I relive her death in my mind, she's at peace. She feels no pain. She is with all the saints and angels, praising the One who created us. She is with God. And for her, everyday is like Christmas.
So, the autopsy report states that Bernadette's cause of death was due to multiple congenital anomalies. You might be thinking "well, duh", but since almost none of the doctors I spoke to
suggested that she wouldn't live to see her birthday, I was concerned that her death was caused by something like an abrupted placenta or a blood clot in her brain. Something that "just happens". Not that that would've made me feel any better, but as her mom, I felt quite unsettled not knowing how she died. The list of abnormalities is overwhelming, although most of them we already knew. However, I didn't realize that she was missing a gall bladder or that there were anomalies in her thoracic spine. Or that her liver had an extra lobe. She did have 2 ovaries and fallopian tubes, and her uterus was split in two. Her kidneys, pancreas, lungs, stomach, heart, and brain looked beautiful.
No matter how emotional this is for me, no matter how much my heart aches when I look down at this 8 page report or when I relive her death in my mind, she's at peace. She feels no pain. She is with all the saints and angels, praising the One who created us. She is with God. And for her, everyday is like Christmas.
Monday, December 3, 2007
Reliving
There will always be triggers that will cause me to relive October 17. When I went in to get my wisdom teeth extracted last week, just having the nurse administer my IV brought me to near tears. It was like I was in L&D all over again. Going to my OB's office for my post partum checkup today was obviously painful, but honestly the hardest part was taking the elevator up to the 4th floor and opening the door that I've opened up a dozen other times. Except this time I wasn't anticipating hearing my daughter's heartbeat on the Doppler or getting my belly measured.
I am often afraid that my friends and family are tired of hearing about my loss, or at least will if I continually bring it up . Jack doesn't ever seem to mind, so I'll often talk to him about how much I miss his sister and how much fun they would have had together if she were alive. I hope he grows up knowing and loving Bernadette. She is such a great intercessor for him and our family, and I really want him to understand who she is and how much she means to us.
It's funny how the emotional ride that I am on can be so unpredictable. Often, I find myself getting into the groove of my old routine, then it hits me all over again. The past couple of nights I have spent just aching for my daughter. My chest feels weighted down, like she is in my arms and I am holding her tightly. The little lifeless body on the ultrasound screen flashes in my head repeatedly, and it's as if it were yesterday. I wish I had some warning when the hopelessness would overwhelm me, but at the same time, I'm glad I am able to enjoy the good moments w/o worrying whether I should feel sad or happy. I will experience both emotions. A lot. And it's okay if I enjoy life one minute, then the next, bawl my eyes out.
Well, there really was no point to this entry except to post a picture of Bernadette's burial plot. I plan to call Johns Hopkins tomorrow to see if they ever completed the autopsy report. I will update everyone if I hear anything.
Wednesday, November 21, 2007
Down the Road of Bittersweet
It's funny who you meet when you are faced with a major tragedy. A friend of a friend of a friend heard about Bernadette when we first found out about her condition and emailed me. She also experienced a scary prenatal diagnosis - her daughter was found to have Trisomy 13. Her beautiful little girl was delivered at 35 weeks and spent 50 precious minutes with her parents before she passed away. Her story and those of other families have really helped me realize that I'm not alone in this. Their testimonies can be found at a great website, Prenatal Partners for Life, which is for parents who discover that their unborn babies have serious conditions that are either incompatible with life or will require extensive treatment. There is little support out there for moms and dads like us. Doctors ask or may even encourage the parents to terminate their pregnancies. Surgeons may refuse to perform certain surgeries if the child is known to have a fatal birth defect. Almost all cloacal exstrophy kids are aborted, even though those who do live (it has a 90% survival rate) live full, rich lives. So, I'd like to encourage parents in similar situations to find support and talk to those who have been there. Please know that you are not alone. You will get through this, and there is a purpose for your baby's time on earth, however short it is. You may never understand why you have to carry such a heavy burden, but know that there is hope. Not a day goes by that I don't wish with all my heart that Bernadette was here with us today. But at the same time, she is here. She resides in me and my family and those whose lives she's touched. I know she is interceding for us at this very moment, and we are a stronger family because of her.
The title of my blog entry is that of a song on the Prenatal Partners for Life homepage. There is no better word to describe the past year. Bittersweet. I am so thankful for the 9 months I had with Bernadette. So much good has come from her short life. And although the grief I feel is often unbearable, I don't regret for an instant this road of bittersweet.
The title of my blog entry is that of a song on the Prenatal Partners for Life homepage. There is no better word to describe the past year. Bittersweet. I am so thankful for the 9 months I had with Bernadette. So much good has come from her short life. And although the grief I feel is often unbearable, I don't regret for an instant this road of bittersweet.
Friday, November 16, 2007
One month seems like forever
Tomorrow is the 1 month anniversary of our baby girl's entrance into heaven. A month that seems like an eternity to me. (No pun intended.) Sometimes I wonder if it has truly hit me that our baby died. I mean, I think I get it, but it is such a horrific reality that I wonder if maybe my heart just hasn't grasped it yet.
The ultrasound still haunts me, the memories of labor and delivery still wake me up at night. But now that we are several weeks past my scheduled C-section (Nov 1), I am starting to think more about what might have been. I can idealize...I can imagine her here at home, soundly sleeping in my arms. But the reality is that she would've been in a hospital crib, hooked up to a respirator while she recovered from surgery. She would've been eating through a feeding tube, not from my breast. I would be spending hours watching her breathe, hours spent away from Jack and John Mark. It wouldn't have been a vacation by any means. That of course isn't to say that I wouldn't give anything to have her with us right now. But something that John Mark brought up with me yesterday is that this whole grieving process started 6 months ago. It's a pretty big wakeup call to find out that your child is sick. Really sick. That her condition is so rare and complicated that our best option is to pack up and move 700 miles away to get her treated. Every time we drove to Birmingham for an ultrasound, we were in for even more hard news. We gradually discovered that our lives would be changed forever. But the problem was that we never had a chance to grieve that reality. We were too busy preparing for her arrival. So, when she passed away, it was like we had climbed to the highest point of Mount Everest only to get buried in an avalanche. All the pain from that climb was still present within ourselves, even if it seemed insignificant compared to the pain of her passing.
The uniqueness of our experience is important when comparing myself to others who have lost loved ones. In other words, it's pointless. No one has the same story. Even if you just look at those who experience death of an unborn baby. One mother loses her child at 7 weeks, another learns at 20 weeks that her baby has anacephaly and won't live for more than a few moments after birth. Another mother is busy decorating her daughter's nursery...she is 39 weeks pregnant and her healthy baby is about to arrive at anytime. She has no doubts or fears in her mind besides the usual anxiety and anticipation of labor. Then, when she arrives at her OB's office for a routine non-stress test, they can't find the heartbeat.
All of these situations are different...these moms have all lost their children, they all grieve and mourn. They cry, they ask "why me?", they are scared that they will never find joy again. But the grieving process is going to be different for each of them. Not because one scenario is worse than the others - they all are terrible and tragic - but because the experiences up to that point are different. So, I can't compare myself to other moms. I have yet to meet someone who has gone through what we've gone through...not many people are faced with the decisions that we had to make. Also, we all have different levels of support. The parents who miscarried may not have told anyone that they were pregnant, so they may not even have anyone to pray for them. Many moms don't have strong faiths that keep them going. Others may have other issues like infertility that make them wonder if they will ever be able to have a child. For some, their stillborn baby was their first, and they have to deal with going back to work.
So, I can compare myself to other grieving moms and say "I have it so much worse because we moved to Baltimore for her only to come home with empty arms. I have it worse because I went full-term and had to deliver a dead baby after spending 9 months bonding with her." But it's not worse. I am blessed with an amazing network of friends and family who have completely overwhelmed us with love, prayers, and support. I am blessed with fertility, so God-willing, we will hopefully be able to give Bernadette more brothers and sisters. I am blessed with an amazing son who is like this beacon of light in my life. I am blessed with a strong and devoted husband who has a faith that can move mountains. So, like I said, what's the point? We all have our stories, we all have our own ways of dealing with our pain and sorrow. We all have incredibly heavy crosses to bear. I can certainly learn from moms who have "been there done that", but there's no reason to worry that my path to healing isn't just like theirs.
The ultrasound still haunts me, the memories of labor and delivery still wake me up at night. But now that we are several weeks past my scheduled C-section (Nov 1), I am starting to think more about what might have been. I can idealize...I can imagine her here at home, soundly sleeping in my arms. But the reality is that she would've been in a hospital crib, hooked up to a respirator while she recovered from surgery. She would've been eating through a feeding tube, not from my breast. I would be spending hours watching her breathe, hours spent away from Jack and John Mark. It wouldn't have been a vacation by any means. That of course isn't to say that I wouldn't give anything to have her with us right now. But something that John Mark brought up with me yesterday is that this whole grieving process started 6 months ago. It's a pretty big wakeup call to find out that your child is sick. Really sick. That her condition is so rare and complicated that our best option is to pack up and move 700 miles away to get her treated. Every time we drove to Birmingham for an ultrasound, we were in for even more hard news. We gradually discovered that our lives would be changed forever. But the problem was that we never had a chance to grieve that reality. We were too busy preparing for her arrival. So, when she passed away, it was like we had climbed to the highest point of Mount Everest only to get buried in an avalanche. All the pain from that climb was still present within ourselves, even if it seemed insignificant compared to the pain of her passing.
The uniqueness of our experience is important when comparing myself to others who have lost loved ones. In other words, it's pointless. No one has the same story. Even if you just look at those who experience death of an unborn baby. One mother loses her child at 7 weeks, another learns at 20 weeks that her baby has anacephaly and won't live for more than a few moments after birth. Another mother is busy decorating her daughter's nursery...she is 39 weeks pregnant and her healthy baby is about to arrive at anytime. She has no doubts or fears in her mind besides the usual anxiety and anticipation of labor. Then, when she arrives at her OB's office for a routine non-stress test, they can't find the heartbeat.
All of these situations are different...these moms have all lost their children, they all grieve and mourn. They cry, they ask "why me?", they are scared that they will never find joy again. But the grieving process is going to be different for each of them. Not because one scenario is worse than the others - they all are terrible and tragic - but because the experiences up to that point are different. So, I can't compare myself to other moms. I have yet to meet someone who has gone through what we've gone through...not many people are faced with the decisions that we had to make. Also, we all have different levels of support. The parents who miscarried may not have told anyone that they were pregnant, so they may not even have anyone to pray for them. Many moms don't have strong faiths that keep them going. Others may have other issues like infertility that make them wonder if they will ever be able to have a child. For some, their stillborn baby was their first, and they have to deal with going back to work.
So, I can compare myself to other grieving moms and say "I have it so much worse because we moved to Baltimore for her only to come home with empty arms. I have it worse because I went full-term and had to deliver a dead baby after spending 9 months bonding with her." But it's not worse. I am blessed with an amazing network of friends and family who have completely overwhelmed us with love, prayers, and support. I am blessed with fertility, so God-willing, we will hopefully be able to give Bernadette more brothers and sisters. I am blessed with an amazing son who is like this beacon of light in my life. I am blessed with a strong and devoted husband who has a faith that can move mountains. So, like I said, what's the point? We all have our stories, we all have our own ways of dealing with our pain and sorrow. We all have incredibly heavy crosses to bear. I can certainly learn from moms who have "been there done that", but there's no reason to worry that my path to healing isn't just like theirs.
Sunday, November 11, 2007
One moment at a time...
1 weeks since Bernadette's funeral...3.5 weeks since her passing. Time moves so slowly as I learn to cope with her death. Staying busy helps, but I am finding that it's important to have that quiet time where I can be alone and think about her. Where I can remember my pregnancy, all of the mountains we had to climb to get us to 37 weeks, to remember that fetal echo where I discovered she was gone, to remember being wheeled into labor and delivery so that I could give birth to her. It's excruciatingly painful to remember those things, but it's important. Because if I bury the memories now, I won't have a chance to get used to it. I need to accept the fact that she is gone. I need to accept the fact that even though I can't think of anything worse than losing a child, things like this just happen. I will never understand why we were chosen to carry such a heavy cross. I will never understand why Bernadette had to die. But I have to accept it, learn from it, be a better mom because of it, be a better wife, friend, and Christian because of it. And I can't accept it until I get used to it. I need to deal with my emotions now. Deal with the pain, the helplessness, the anger, the sorrow. It sucks, and I'd give anything to be in the NICU right now, holding my daughter's hand while she lies there, recovering from surgery. I'd give anything to wake up every 2 hours to pump milk for her, to sleep on a stiff chair beside her hospital crib. But she's gone. I wish there was a word in the English language that could express just how much I miss her.
The nights are still the worse. If I wake up at any point, that's it. I might as well mow the lawn or organize the garage, because I'm not going back to sleep. I am now calling it my 'torture time' because it's pretty much when I relive the horrors of these past months. It's like this video that keeps replaying itself over and over, and there are no distractions to keep them at bay.
I can also see why people have a hard time with the holidays. I don't have any memories of being pregnant with Bernadette during Thanksgiving and Christmas, but since the focus is so strongly on joy, children, being together as a family...well, it's not hard to feel completely lost, like "hello, why is everyone so happy? My baby just died...how can you just get on with your lives and be so excited about some dumb turkey dinner and Santa Clause?" It's funny how I expect the world to stop and everyone to be as grief-stricken as me.
Now that I've totally depressed whoever is reading this, I will try to end on a good note. Jack and John Mark are doing a great job at keeping me from totally losing it. Jack gets me out of bed each morning by squealing from the other room, completely oblivious to the fact that no one in his right mind is this excited when the sun hasn't even risen yet. I am so blessed to have such a happy little man who keeps me busy by tearing apart the house and throwing sand all over the back porch. Suddenly, I find great comfort in the mess he creates. John Mark is always aware of when I need to get out of the house or when I simply need a shoulder to cry on. He has even gotten me hooked on Guitar Heroes III and Wii Sports. Nothing like a little boxing to take care of my frustration. And my friend, Leigh, has invested so much of her time in keeping me busy, that I find a lot of my day is spent laughing and enjoying the simple pleasures in life like Southern Living recipes and taking walks with the kids. Thank God for friends who keep me sane!
By the way, here is a picture of Ben and Jack with Santa. In case you can't tell, Jack is the one screaming bloody murder, refusing to believe that Daddy would surrender him to a scary, white-bearded man in a furry red suit.
The nights are still the worse. If I wake up at any point, that's it. I might as well mow the lawn or organize the garage, because I'm not going back to sleep. I am now calling it my 'torture time' because it's pretty much when I relive the horrors of these past months. It's like this video that keeps replaying itself over and over, and there are no distractions to keep them at bay.
I can also see why people have a hard time with the holidays. I don't have any memories of being pregnant with Bernadette during Thanksgiving and Christmas, but since the focus is so strongly on joy, children, being together as a family...well, it's not hard to feel completely lost, like "hello, why is everyone so happy? My baby just died...how can you just get on with your lives and be so excited about some dumb turkey dinner and Santa Clause?" It's funny how I expect the world to stop and everyone to be as grief-stricken as me.
Now that I've totally depressed whoever is reading this, I will try to end on a good note. Jack and John Mark are doing a great job at keeping me from totally losing it. Jack gets me out of bed each morning by squealing from the other room, completely oblivious to the fact that no one in his right mind is this excited when the sun hasn't even risen yet. I am so blessed to have such a happy little man who keeps me busy by tearing apart the house and throwing sand all over the back porch. Suddenly, I find great comfort in the mess he creates. John Mark is always aware of when I need to get out of the house or when I simply need a shoulder to cry on. He has even gotten me hooked on Guitar Heroes III and Wii Sports. Nothing like a little boxing to take care of my frustration. And my friend, Leigh, has invested so much of her time in keeping me busy, that I find a lot of my day is spent laughing and enjoying the simple pleasures in life like Southern Living recipes and taking walks with the kids. Thank God for friends who keep me sane!
By the way, here is a picture of Ben and Jack with Santa. In case you can't tell, Jack is the one screaming bloody murder, refusing to believe that Daddy would surrender him to a scary, white-bearded man in a furry red suit.
Sunday, November 4, 2007
Donations
I wanted to thank our friends who generously donated to the Association for the Bladder Exstrophy Community in memory of Bernadette. This organization is the only one of its kind and offers tons of support for exstrophy kids and their families. If you would like to donate in honor of our daughter, go here. Their home page is www.bladderexstrophy.com.
Thank you to everyone who attended Bernadette's funeral. We were incredibly touched by your sincerity. I can't express enough how powerful your prayers and support are for us during this difficult time. May God Bless you all in your kindness and compassion.
We miss you, little one, and we are so excited for the day when we can finally be reunited!
Thank you to everyone who attended Bernadette's funeral. We were incredibly touched by your sincerity. I can't express enough how powerful your prayers and support are for us during this difficult time. May God Bless you all in your kindness and compassion.
We miss you, little one, and we are so excited for the day when we can finally be reunited!
Tuesday, October 30, 2007
Grace
If I could have a lifetime wish,
a dream that would come true
I'd pray to God with all my heart
for yesterday and you.
A thousand words can't bring you back.
I know because I've tried.
And neither can a million tears;
I know because I've cried
You left behind my broken heart
and happy memories too.
I never wanted memories,
I only wanted you.
I discovered this poem and decided to post it, because it perfectly describes what I've been through these past 2 weeks. It amazes me how much I have changed since that moment I discovered our sweet Bernadette had passed. In an instant, I recognized our mortality, our lack of immunity against suffering and tragedy. It is only by the grace of God and many words of wisdom from other moms who have walked this road that I have gained hope that I will survive this, that our daughter is indeed in heaven, being held and loved by Our Mother and her Son. Without grace, I honestly don't know how I would find the energy to get up in the morning, let alone experience joy again.
So, hopefully I will someday learn to accept that I may never know why Bernadette had to die. I may never realize what graces have been poured forth into our family and into those touched by her short life on earth and in heaven. I don't think I'm there yet, but I am relieved that I am able to pray again, even if it's simple utterances of His name while I lie awake at night in darkness and sorrow.
I don't really know the point of my blog at this point. My original intention was to both educate other moms whose children have been diagnosed with cloacal exstrophy, as well as to keep family and friends updated on our situation. But obviously, things didn't go as planned. Hopefully, I will be able to continue sharing my thoughts as I grieve and heal from our loss. Maybe moms who experience stillbirth can learn from my experience...I know that much of my healing occurs from talking to others who have lived through such a tragedy.
a dream that would come true
I'd pray to God with all my heart
for yesterday and you.
A thousand words can't bring you back.
I know because I've tried.
And neither can a million tears;
I know because I've cried
You left behind my broken heart
and happy memories too.
I never wanted memories,
I only wanted you.
I discovered this poem and decided to post it, because it perfectly describes what I've been through these past 2 weeks. It amazes me how much I have changed since that moment I discovered our sweet Bernadette had passed. In an instant, I recognized our mortality, our lack of immunity against suffering and tragedy. It is only by the grace of God and many words of wisdom from other moms who have walked this road that I have gained hope that I will survive this, that our daughter is indeed in heaven, being held and loved by Our Mother and her Son. Without grace, I honestly don't know how I would find the energy to get up in the morning, let alone experience joy again.
So, hopefully I will someday learn to accept that I may never know why Bernadette had to die. I may never realize what graces have been poured forth into our family and into those touched by her short life on earth and in heaven. I don't think I'm there yet, but I am relieved that I am able to pray again, even if it's simple utterances of His name while I lie awake at night in darkness and sorrow.
I don't really know the point of my blog at this point. My original intention was to both educate other moms whose children have been diagnosed with cloacal exstrophy, as well as to keep family and friends updated on our situation. But obviously, things didn't go as planned. Hopefully, I will be able to continue sharing my thoughts as I grieve and heal from our loss. Maybe moms who experience stillbirth can learn from my experience...I know that much of my healing occurs from talking to others who have lived through such a tragedy.
Monday, October 29, 2007
Our Baby Girl
We have a daughter in heaven - her name is Bernadette Marie.
I think we always knew deep down that it was a girl, even though there are many more boys than girls diagnosed with cloacal exstrophy. We got some of the test results back. Nothing is finalized, but her cause of death doesn't seem to be due to a chromosomal defect. I was shocked by my reaction - I wanted it to be chromosomal because that would mean her body just wasn't compatible with life - in my mind, I was beginning to accept that. I don't know how I'm going to handle it if I find out that it was something that just happened, that if she was delivered but a day earlier, she would be here with us right now.
It will take some time for the autopsy report to be finalized, but I guess I have to prepare my heart for the distinct possibility that we may never know why she died. Please pray that we may find some closure in all of this. Thank you,
Michele
I think we always knew deep down that it was a girl, even though there are many more boys than girls diagnosed with cloacal exstrophy. We got some of the test results back. Nothing is finalized, but her cause of death doesn't seem to be due to a chromosomal defect. I was shocked by my reaction - I wanted it to be chromosomal because that would mean her body just wasn't compatible with life - in my mind, I was beginning to accept that. I don't know how I'm going to handle it if I find out that it was something that just happened, that if she was delivered but a day earlier, she would be here with us right now.
It will take some time for the autopsy report to be finalized, but I guess I have to prepare my heart for the distinct possibility that we may never know why she died. Please pray that we may find some closure in all of this. Thank you,
Michele
Friday, October 26, 2007
Funeral Arrangements
We scheduled the funeral for Saturday, November 3 at 2:00pm. A small reception will follow at our house. If you would like directions, please email me at michele.b.weber@gmail.com.
Edited to add:
Now that everything is finalized, I wanted to make sure y'all knew that the funeral is of course open to everyone. We will have a private burial at the cemetery immediately following the Mass, but we plan to head to the house right afterwards. Everyone is welcome to come, and like I said, you can either email me for directions or follow someone else to our house. It's about 5 minutes from the church.
Edited to add:
Now that everything is finalized, I wanted to make sure y'all knew that the funeral is of course open to everyone. We will have a private burial at the cemetery immediately following the Mass, but we plan to head to the house right afterwards. Everyone is welcome to come, and like I said, you can either email me for directions or follow someone else to our house. It's about 5 minutes from the church.
Thursday, October 25, 2007
A Bittersweet Goodbye
Well, we made it home. I didn't think it was possible to hurt any more than I already did, but yet sitting there in the room she was to share with Jack, with her picture in my hand, I couldn't shake the sadness or emptiness I felt. Our little baby was supposed to be in that back seat on that long trip home, staring and babbling to her big brother, Jack. It was supposed to be January, and we were supposed to have gone through weeks in the hospital to help her heal and live a normal life. It's not supposed to be October, the infant seat shouldn't be stashed away in the trunk, empty. This isn't happening. Why haven't I woken up from this nightmare yet?
So, saying goodbye to Baltimore was a relief, yet I yearn to be back there, waiting for that moment to arrive when we would welcome our little one into this world. I feel like I left a piece of her there, I abandoned the hope and promise that she was going to be alright, that she was going to come home and be a part of our family. The pain is unbearable, and I ask for your prayers that I may be relieved of it if even for a few moments.
My neighbors have been amazing. We came home to a stocked pantry and fridge, clean bathrooms and kitchen, vacuumed carpet, and pots of flowers in every room. We couldn't ask for a warmer welcome! Its details like these that make me realize how much I've taken friendships and community for granted. Hopefully, someday, I can pay it forward to another family in need.
So, saying goodbye to Baltimore was a relief, yet I yearn to be back there, waiting for that moment to arrive when we would welcome our little one into this world. I feel like I left a piece of her there, I abandoned the hope and promise that she was going to be alright, that she was going to come home and be a part of our family. The pain is unbearable, and I ask for your prayers that I may be relieved of it if even for a few moments.
My neighbors have been amazing. We came home to a stocked pantry and fridge, clean bathrooms and kitchen, vacuumed carpet, and pots of flowers in every room. We couldn't ask for a warmer welcome! Its details like these that make me realize how much I've taken friendships and community for granted. Hopefully, someday, I can pay it forward to another family in need.
Monday, October 22, 2007
Thank you
I wanted to say thank you to those who have brought us meals these past few days, who have offered up their prayers for our family, and who have contacted us with their concerns and love. It has been a difficult week. Much of the day, I struggle to put one foot in front of the other. I feel raw and angry. I want my little one back...I want to hold her, nurse her, tell her how special she is. I feel like my most cherished treasure - my own flesh and blood - has been taken from me. Unjustly. I know that our lives are not really ours...but I don't think I can ever comprehend why this little life could not be spared. I want to believe that she can see my face and know how much I love her. That she is resting her perfect little hand on my shoulder, comforting me in my sorrow. God, please let me meet my little baby in heaven someday.
We are still in Baltimore, waiting for the finalization of our child's cremation. I wish so much that there was some way we could bury her without cremating her first, but we need to bring her home with us, so that we are able to visit her often. I will keep you posted on any funeral arrangements. We plan to celebrate a Mass for her in the upcoming weeks.
Please pray for strength, as I struggle to find hope and peace again. And may God bless all those who mourn the loss of their children. May their tears be wiped away and their joy renewed.
God Bless,
Michele
We are still in Baltimore, waiting for the finalization of our child's cremation. I wish so much that there was some way we could bury her without cremating her first, but we need to bring her home with us, so that we are able to visit her often. I will keep you posted on any funeral arrangements. We plan to celebrate a Mass for her in the upcoming weeks.
Please pray for strength, as I struggle to find hope and peace again. And may God bless all those who mourn the loss of their children. May their tears be wiped away and their joy renewed.
God Bless,
Michele
Friday, October 19, 2007
A Joyful Day in Heaven
Our little baby passed away on Wednesday, October 17. They induced me, and I delivered her at 1:48pm on Thursday. She was 5 lb 8 oz. We aren't sure of the sex b/c the genitals were ambiguous, but we will let you know once the kerotyping results come back in a couple of weeks.
I went in for a fetal echo on Wednesday, during which they couldn't find a heartbeat. I knew something was wrong as soon as the chest showed up on the screen with nothing moving or beating. It was the darkest hour of my life while I waited frantically for John Mark, who had to find someone to watch Jack before he drove 40 minutes to the hospital. I remember shaking uncontrollably, refusing to put my hand to my belly to search for movement. The baby was breech, but they chose to induce anyway. They started cervidil that night. I was 5 cm dilated by the time they started the pitocin 12 hours later, so it didn't take long before my water broke and I started pushing. I got an epidural at some point during labor, but it only numbed my right side. When I began pushing, I was convinced I was in hell. I was terrified of what our baby might look like, of coming face to face with my greatest nightmare, and I simply couldn't comprehend how I was going to have the strength to push this child out only to have silence follow. The pain was horrific - I really don't have any idea how moms go through natural labor willingly. Finally, the child's behind (he was frank breech), then legs, came through. The head was last, of course. John Mark went over to see our deceased baby, and the perinatologist discussed with him some of the anomalies that might suggest a chromosomal defect. He had 2 thumbs on his left hand, and his right lower leg was split in 2, with 2 nubs instead of a foot. His eyes were slightly slanted, and his lips were thin. Part of the colon was outside the omphalocele, and as I said, the genitals were split in 2, and it was too hard to tell if it was a girl or boy.
I didn't have the emotional strength to see the baby until they wrapped him up and placed him in my arms. I'm sure all of Labor & Delivery heard my sobs. He was the most beautiful little thing I had ever seen, with perfect reddish-brown curls on his head and a soft nubby nose.
I don't think I will ever forget the helplessness I felt during that moment with him. How could I let this innocent little baby die? How could I not have noticed the ceasing of movements on Wednesday? Why didn't they just rip me open and try to revive him? Why did it have to end like this, after we dropped everything to move to Maryland to try to make things right?
I must say, however, that the care and support I received at Hopkins was incredible. The doctors and nurses were always focused on making things as comfortable as possible for me. They were full of encouragement when I was convinced I wouldn't be able to go through with it. The nurses cried along with us, and I almost felt guilty that I had to put them through such a terrible experience.
I was able to come home today, October 19, b/c I only slightly tore and recovery hasn't been too complicated. It's John Mark's birthday, and I couldn't think of a worse birthday gift, lol. We both feel at peace b/c we are too aware of all the pain and suffering this child would've gone through if he lived (due to his condition). But the emptiness I feel is overwhelming. None of this seems right. So, please keep our family in your prayers. We are probably going to head home to Alabama in a few days, once I am able to sit up and walk more comfortably. We are having our child cremated so that we can bring him home with us and have a proper funeral and burial. They are currently performing an autopsy to determine the exact cause of death.
I will keep you posted on any updates. Thanks again for all your prayers and support!
Michele, John Mark, Jack, and our little saint
I went in for a fetal echo on Wednesday, during which they couldn't find a heartbeat. I knew something was wrong as soon as the chest showed up on the screen with nothing moving or beating. It was the darkest hour of my life while I waited frantically for John Mark, who had to find someone to watch Jack before he drove 40 minutes to the hospital. I remember shaking uncontrollably, refusing to put my hand to my belly to search for movement. The baby was breech, but they chose to induce anyway. They started cervidil that night. I was 5 cm dilated by the time they started the pitocin 12 hours later, so it didn't take long before my water broke and I started pushing. I got an epidural at some point during labor, but it only numbed my right side. When I began pushing, I was convinced I was in hell. I was terrified of what our baby might look like, of coming face to face with my greatest nightmare, and I simply couldn't comprehend how I was going to have the strength to push this child out only to have silence follow. The pain was horrific - I really don't have any idea how moms go through natural labor willingly. Finally, the child's behind (he was frank breech), then legs, came through. The head was last, of course. John Mark went over to see our deceased baby, and the perinatologist discussed with him some of the anomalies that might suggest a chromosomal defect. He had 2 thumbs on his left hand, and his right lower leg was split in 2, with 2 nubs instead of a foot. His eyes were slightly slanted, and his lips were thin. Part of the colon was outside the omphalocele, and as I said, the genitals were split in 2, and it was too hard to tell if it was a girl or boy.
I didn't have the emotional strength to see the baby until they wrapped him up and placed him in my arms. I'm sure all of Labor & Delivery heard my sobs. He was the most beautiful little thing I had ever seen, with perfect reddish-brown curls on his head and a soft nubby nose.
I don't think I will ever forget the helplessness I felt during that moment with him. How could I let this innocent little baby die? How could I not have noticed the ceasing of movements on Wednesday? Why didn't they just rip me open and try to revive him? Why did it have to end like this, after we dropped everything to move to Maryland to try to make things right?
I must say, however, that the care and support I received at Hopkins was incredible. The doctors and nurses were always focused on making things as comfortable as possible for me. They were full of encouragement when I was convinced I wouldn't be able to go through with it. The nurses cried along with us, and I almost felt guilty that I had to put them through such a terrible experience.
I was able to come home today, October 19, b/c I only slightly tore and recovery hasn't been too complicated. It's John Mark's birthday, and I couldn't think of a worse birthday gift, lol. We both feel at peace b/c we are too aware of all the pain and suffering this child would've gone through if he lived (due to his condition). But the emptiness I feel is overwhelming. None of this seems right. So, please keep our family in your prayers. We are probably going to head home to Alabama in a few days, once I am able to sit up and walk more comfortably. We are having our child cremated so that we can bring him home with us and have a proper funeral and burial. They are currently performing an autopsy to determine the exact cause of death.
I will keep you posted on any updates. Thanks again for all your prayers and support!
Michele, John Mark, Jack, and our little saint
Thursday, October 11, 2007
36 week update
I apologize for the delayed update. We are getting settled, so I am finally able to spend a few minutes on the computer. John Mark drove us up to Baltimore last weekend, then flew back home on Monday. We are staying with friends who have so willingly taken the time to watch Jack and cook us dinner while I spend the days at Hopkins. A few weeks ago, I developed sciatica, and it has been really tough getting around and caring for our active little tot. So, John Mark decided to wrap things up in Huntsville, and he's en route as I type - yea!
I have been busy this week with surgical consults and prenatal checkups that left me emotionally drained and more anxious than ever to deliver this baby. Dr. Jallo, the pediatric neurosurgeon, stated that if she has closed spina bifida, we can wait to get it treated by Dr. Oakes in Birmingham. If it's open, they will fix it immediately. Dr. Sponseller, the pediatric orthopedic surgeon, prefers to do the osteotomies (readjusting the pelvic bones) when the baby is closer to 2 yrs of age, although Dr. Gearhart often likes to have it done when they are newborns. I was quite surprised by this, because it would mean a shorter initial stay and another longer trip later when our child is older. I imagine it will be very tough to deal with having our little toddler in traction for 8+ weeks, but I obviously trust their joint decision on this. I will keep you posted on what they decide.
My ultrasound wasn't super encouraging, b/c the physician that saw me (not Dr. Crino) was concerned that a chromosomal abnormality could be the cause of her condition. Her reasons were based on the fact that the baby's right leg was measuring very small, and she didn't think it was necessarily related to the cloacal exstrophy. She even claimed that the femur was measuring small, which was a new development. I refused an amniocentesis b/c any findings could potentially alter their decisions on treatment (i.e. they can deny to perform certain surgeries if she has a lethal defect). They also found only 2 umbilical cord vessels instead of 3. This occurs in 5% of pregnancies (and they might have already observed this in previous u/s, but this was news to me), but the doctor scheduled an echocardiogram for next week to make sure her heart is doing ok. I am also having to do non-stress tests 2 days a week b/c the baby is measuring small and they want to make sure her heart rate and movement are okay. I had my first one today, and everything looked great! I have been tempted to get really discouraged by this doctor's suspicions, but I really do sense that everything is related to the cloacal exstrophy and is not chromosomal. We'll find out soon enough!
My last appointment was with a perinatologist to do some basic prenatal care stuff. She didn't check my cervix, although when I was in Labor & Delivery a few days ago to make sure my back pain wasn't due to contractions, I was not dilated (my cervix was soft, however). Anyway, the baby is breech with his head digging into my ribs, and although that can very well change, she wanted to schedule a C-section for November 1 (The Feast of All Saints!). If the baby moves to the normal position before then, and I still haven't delivered by 39 wks, they will induce and I can attempt a vaginal delivery. She suspects that I won't go that long, but I'm not keeping my hopes up. Women in my family just don't deliver babies early. :)
Anyway, I apologize for not keeping in better touch with you all individually. Every moment I'm not at Hopkins, I am trying to spend with Jack or helping around the house. And since Jack has been blessed with his 2nd cold of the season, neither of us are sleeping much. (I am counting the hours until John Mark can be here and take over night duty! lol)
Thanks again for all your prayers, support, and gifts. We couldn't have made it this far without them!
I have been busy this week with surgical consults and prenatal checkups that left me emotionally drained and more anxious than ever to deliver this baby. Dr. Jallo, the pediatric neurosurgeon, stated that if she has closed spina bifida, we can wait to get it treated by Dr. Oakes in Birmingham. If it's open, they will fix it immediately. Dr. Sponseller, the pediatric orthopedic surgeon, prefers to do the osteotomies (readjusting the pelvic bones) when the baby is closer to 2 yrs of age, although Dr. Gearhart often likes to have it done when they are newborns. I was quite surprised by this, because it would mean a shorter initial stay and another longer trip later when our child is older. I imagine it will be very tough to deal with having our little toddler in traction for 8+ weeks, but I obviously trust their joint decision on this. I will keep you posted on what they decide.
My ultrasound wasn't super encouraging, b/c the physician that saw me (not Dr. Crino) was concerned that a chromosomal abnormality could be the cause of her condition. Her reasons were based on the fact that the baby's right leg was measuring very small, and she didn't think it was necessarily related to the cloacal exstrophy. She even claimed that the femur was measuring small, which was a new development. I refused an amniocentesis b/c any findings could potentially alter their decisions on treatment (i.e. they can deny to perform certain surgeries if she has a lethal defect). They also found only 2 umbilical cord vessels instead of 3. This occurs in 5% of pregnancies (and they might have already observed this in previous u/s, but this was news to me), but the doctor scheduled an echocardiogram for next week to make sure her heart is doing ok. I am also having to do non-stress tests 2 days a week b/c the baby is measuring small and they want to make sure her heart rate and movement are okay. I had my first one today, and everything looked great! I have been tempted to get really discouraged by this doctor's suspicions, but I really do sense that everything is related to the cloacal exstrophy and is not chromosomal. We'll find out soon enough!
My last appointment was with a perinatologist to do some basic prenatal care stuff. She didn't check my cervix, although when I was in Labor & Delivery a few days ago to make sure my back pain wasn't due to contractions, I was not dilated (my cervix was soft, however). Anyway, the baby is breech with his head digging into my ribs, and although that can very well change, she wanted to schedule a C-section for November 1 (The Feast of All Saints!). If the baby moves to the normal position before then, and I still haven't delivered by 39 wks, they will induce and I can attempt a vaginal delivery. She suspects that I won't go that long, but I'm not keeping my hopes up. Women in my family just don't deliver babies early. :)
Anyway, I apologize for not keeping in better touch with you all individually. Every moment I'm not at Hopkins, I am trying to spend with Jack or helping around the house. And since Jack has been blessed with his 2nd cold of the season, neither of us are sleeping much. (I am counting the hours until John Mark can be here and take over night duty! lol)
Thanks again for all your prayers, support, and gifts. We couldn't have made it this far without them!
Tuesday, October 2, 2007
Winding down...
Well, our days in Huntsville are winding down. I feel hugely pregnant and wonder how I'm ever going to make it through 2 days of driving, lol. John Mark insists that we are stopping at every rest stop so that I can walk for 30 minutes. Is he nuts?! Maybe I can convince him that 10 min of walking is sufficient. ;-)
Anyway, I'm posting to thank our friends and family here in Huntsville who have helped us in so many ways while we prepare for our little one's arrival. Our neighbors who are dear friends of ours have offered to watch our house and our cat (who will surely be relieved of Jack's absence, lol). They have given us so much support during this waiting period, and I can't thank them enough! Jack will undoubtedly miss his buddy, Ben, and his big sister, Anna. Our families went to Tate Farms last weekend, and I honestly don't remember having that much fun in a long time. I am still finding corn in the laundry room and the sock drawer!
John Mark's aunt and uncle held a surprise baby shower/going-away dinner for us this weekend, as well. We were so grateful for the farewells and the gifts we received! Our pastor came to the dinner and said a special blessing over us...I was very moved by his commitment to minister to families like ours who can often feel like the cross given to them is too heavy to carry alone.
Oh yeah, another thank you...my hubby's company is being incredibly generous by allowing him to work away from the office for an extended period of time so that he can be with Jack and me in Baltimore. Despite the hours he will have to put toward work, I am so relieved that he will be with us...John Mark has the amazing ability to see the positive in every situation, and I know his sense of humor will keep us emotionally afloat during the upcoming months!
OK, enough with the mushy stuff. I better get packing...Jack is notorious for taking short naps when I have a long list of things to do. ;)
Take care,
Michele
Thursday, September 27, 2007
Last trip to Birmingham
I had my last ultrasound done in Birmingham (I've been going every month to monitor the baby). Things are looking great. There is a slight chance her right fibula is actually there, but the bones are really thin and the leg is short, so it's hard to tell. And he actually saw part of the bladder! That was the first time there was any evidence that it existed (albeit split in half, most likely).
Other than that, things are the same. He thinks he sees part of the liver in the omphalocele, but it's not a significant amount, so the size of the O probably won't hinder my ability to deliver vaginally. He may see a slight gap (or opening) in the sacral region of the spinal column, but it's too hard to tell. The fact that there are no abnormalities in her brain size or structure is a good indication that it's probably not open spina bifida. There is definitely scoliosis of the spine in the lumbar and sacral regions, as well as some hemivertebrae. Again, we can't know for sure the significance of that in terms of paralysis and innervation of the bowel and urinary tract. We'll find out soon enough.
So, in a week, we are off to Baltimore. I don't feel any contractions or anything, so I'm hopeful that we'll make it up there with no problems. We'll keep you posted!
Other than that, things are the same. He thinks he sees part of the liver in the omphalocele, but it's not a significant amount, so the size of the O probably won't hinder my ability to deliver vaginally. He may see a slight gap (or opening) in the sacral region of the spinal column, but it's too hard to tell. The fact that there are no abnormalities in her brain size or structure is a good indication that it's probably not open spina bifida. There is definitely scoliosis of the spine in the lumbar and sacral regions, as well as some hemivertebrae. Again, we can't know for sure the significance of that in terms of paralysis and innervation of the bowel and urinary tract. We'll find out soon enough.
So, in a week, we are off to Baltimore. I don't feel any contractions or anything, so I'm hopeful that we'll make it up there with no problems. We'll keep you posted!
Sunday, September 23, 2007
Thank you!
I just wanted to say a quick thank you to all who have so willingly offered to help us. It really is overwhelming. For those who are boarding Jack and I while we await our baby's arrival, who have offered to babysit Jack while I go to my doctor's appointments, who have offered frequent flyer miles, meals, winter clothes for Jack...I can't put into words how much we appreciate your generosity, hospitality, and Christian charity. It is certainly humbling to accept your gifts, knowing that there is no way we could ever repay you. Just know that you are in our constant prayers!
Michele, John Mark, Jack, and Baby
Michele, John Mark, Jack, and Baby
Thursday, September 6, 2007
It's official!
We're going to Hopkins. :) It finally hit me when the perinatologist's assistant called today to list off the numerous appointments I have the 2nd week in October. That's after driving John Mark to the airport and saying goodbye, with the expectation of not seeing him for possibly 3 weeks. It's going to be a long month.
The good news is that our friends who live outside of B'more have offered to house Jack and I until we deliver the baby! Wow, what an answered prayer! (Particularly after seeing the prices of extended-stay hotels in the area.) It will also allay my fear of bringing Jack with me to the hospital while I'm in active labor. To know that someone can watch him until John Mark and/or my folks arrive, brings infinite comfort! It's hard to accept such generosity, but I know that it's time to humbly say "yes" when others offer their help. I only wish I could repay them in some way.
I'm going to miss my home...I honestly don't really know how I'm going to handle being away for so long (probably 3 months or more, I suppose?). I wasn't too impressed with Johns Hopkins in the way of hospitality - there is no place for Jack to run around (which he needs to do on an hourly basis in order to stay sane), the food stinks, and there are a gazillion people going in every direction at all times. I hear that parents even have to pay for coffee on the pediatric floor. At many hospitals, I've heard of parents receiving free meals while their kid is receiving treatment. Looks like I'll be packing a lot of peanut butter sandwiches! I also really don't like that the hospital is surrounded by sketchy neighborhoods. Hopefully, we'll be able to find a trusty public library or playground to allow Jack to spread out a bit. :)
So, I'm in the process of getting my life in order...figuring out a winter wardrobe for Jack and I (winter is coming much earlier for us this year!), stocking our freezer with meals for John Mark, transferring files to the lap top, buying plane tickets for John Mark and planning our drive north. Making sure I pack everything I need w/o having to rent a Uhaul. ;-) This is so not a small task, considering how tiny our car is. Jack's stroller takes up half of the trunk! lol.
So, please continue praying for our family. We are so excited to have the opportunity to receive treatment from Dr. Gearhart and his crew. We pray that our little one stays warm and cozy in my womb until we are safely in B'more.
I'll keep you posted!
Michele
The good news is that our friends who live outside of B'more have offered to house Jack and I until we deliver the baby! Wow, what an answered prayer! (Particularly after seeing the prices of extended-stay hotels in the area.) It will also allay my fear of bringing Jack with me to the hospital while I'm in active labor. To know that someone can watch him until John Mark and/or my folks arrive, brings infinite comfort! It's hard to accept such generosity, but I know that it's time to humbly say "yes" when others offer their help. I only wish I could repay them in some way.
I'm going to miss my home...I honestly don't really know how I'm going to handle being away for so long (probably 3 months or more, I suppose?). I wasn't too impressed with Johns Hopkins in the way of hospitality - there is no place for Jack to run around (which he needs to do on an hourly basis in order to stay sane), the food stinks, and there are a gazillion people going in every direction at all times. I hear that parents even have to pay for coffee on the pediatric floor. At many hospitals, I've heard of parents receiving free meals while their kid is receiving treatment. Looks like I'll be packing a lot of peanut butter sandwiches! I also really don't like that the hospital is surrounded by sketchy neighborhoods. Hopefully, we'll be able to find a trusty public library or playground to allow Jack to spread out a bit. :)
So, I'm in the process of getting my life in order...figuring out a winter wardrobe for Jack and I (winter is coming much earlier for us this year!), stocking our freezer with meals for John Mark, transferring files to the lap top, buying plane tickets for John Mark and planning our drive north. Making sure I pack everything I need w/o having to rent a Uhaul. ;-) This is so not a small task, considering how tiny our car is. Jack's stroller takes up half of the trunk! lol.
So, please continue praying for our family. We are so excited to have the opportunity to receive treatment from Dr. Gearhart and his crew. We pray that our little one stays warm and cozy in my womb until we are safely in B'more.
I'll keep you posted!
Michele
Wednesday, August 22, 2007
On to Hopkins...
Well, we are back from Baltimore. If there is one thing I've learned this summer about traveling with a toddler, it's that you simply cannot leave home without a bag of lolly pops and a large package of baby wipes. Those 2 things can make or break your sanity. :)
Anyway, our consults went extremely well. We first met Dr. Gearhart, who was incredibly personable and smart. I immediately felt at ease about our child's condition when we talked with him. You just can't beat getting treated by someone who lives for babies with cloacal exstrophy!
We then had an u/s done by Dr. Crino. It was the best u/s yet b/c it didn't reveal any new problems. (That's a first for us.) Here is what we are dealing with:
1. A beautiful little one who loves to squirm and get into the worst positions possible while being observed on u/s. She's undoubtedly shy.
2. They cannot see an open spina bifida, although it was too hard to see in the u/s. They do see some scoliosis, hemivertebrae, and overall some deformity of the spine in the lumbar and sacral regions.
3. The pelvic bones are definitely spread out pretty widely.
4. The left foot is mildly clubbed, but the leg is measuring the correct length.
5. The right foot was too hard to see, but they are pretty sure her right fibula was missing. The leg looks a good bit smaller, as well.
6. She has a moderately-sized omphalocele (O) and exstrophy of the bladder, hence confirming the diagnosis of CE.
7. They still could not determine the sex.
A couple of great things that we learned during our visit with Dr. Crino were:
1. Her cerebellum looks good, so the chances of open spina bifida are lower.
2. She has 2 healthy-looking kidneys. Oftentimes with CE, the baby is only born with 1.
3. She was moving her left foot while we were observing it, and that indicates that she's probably not paralyzed - yippee!
4. Her heart was beating at a healthy rate - another yippee! Gosh, I can't tell you how wonderful it feels to see her beautiful 4-chambered heart beating.
He believes that since I was able to deliver Jack vaginally, that I can deliver vaginally this time, as well. They only like to perform C-sections for obstetric reasons, like if labor isn't progressing well or whatever. The O doesn't look too big to fit through the birth canal. Also, since Jack hung out in my womb until past my due date (I was induced 3 days after, and I wasn't even dilated at that point), the chances of me going into pre-term labor is small, so, he doesn't feel that there is a need to move to B'more before 37 weeks. Then, I will just wait it out and hopefully go into labor naturally. At ~39 wks, they will induce if necessary.
This news was huge for me. If the above paragraph was all I heard on Monday, it would've made all the inconveniences of traveling to B'more this week worth the trouble. Our plan is actually to arrive at 36 wks, since it will be a long drive, and things like sitting in a tiny Honda Civic is getting more and more uncomfortable everyday. The Children's House at Johns Hopkins, which is a place for families to stay while their children are receiving treatment (at a much lower rate than a hotel), will not allow us to stay there until after we give birth (and that's only if they have space), so I'm in the process of looking for extended-stay hotels outside the city. My guess is that John Mark will help us get settled, then fly back to Huntsville and work, so he doesn't use up all of his vacation time before the real fun begins.
OK, back to our consults...our last visit was with a neonatologist, Dr. Woods, who was a tremendous help in our understanding of our little one's stay in the NICU. We also toured the NICU, and although there were no babies with O's or anything, we were able to see what the feeding tubes, IVs, and ventilators looked like. She said that obviously, we don't know for sure everything that will be done and in what order, but we should expect our child to have her initial surgeries within the first couple days of life. When she's born, they will take her away, cover up her O and bladder with a bag to prevent the area from drying out and from getting infected. They will make sure she's breathing and all that jazz (minor details, right?), then get her ready for surgery. The initial surgeries will probably involve 1. repairing the open spina bifida, if there is one, or other neurological issues, 2. fusing the bladder, 3. placing all her organs into her abdominal cavity if possible, 4. fusing the pelvic bones and placing her on traction. She will be highly sedated and will have to be intubated during the surgery and recovery period. After about a week or two, she will be transferred to the infant floor, where she will have a private room...this will help us b/c the NICU doesn't have much privacy (at all), and this way, one of us can spend the night with her. She will probably be in traction for weeks, which I already know will be one of the hardest things for me to deal with. I can't believe how much I took for granted all the time I spent holding and cuddling with Jack when he was a newborn. I guess we'll have to replace all that with lots of kisses (eew, nevermind, it'll be flu season, lol) and hand-holding.
So, as you might have guessed, we pretty much decided to go with Hopkins. When we arrive in October, we will meet the neurosurgeon and orthopedic surgeon, as well as see Dr. Crino for continual monitoring. My prayer is that she feels comfy enough in my womb to make it to 37 wks, so that we don't have to worry about transferring her from Huntsville or B'ham.
One of the most rewarding parts of our trip (even though I wasn't present, since I was in the middle of the u/s) was when Dr. Gearhart brought a 6 yr old boy and his mother up to meet John Mark and Jack. The boy has CE and fibular hemimelia, has gone through 26 surgeries and counting, but plays and acts like any other boy. He was in B'more to get a bladder placed in his tummy (he was born without one, I believe). He also got his belly button! (Babies with O's don't have them unless a surgeon artificially creates one.) He was born with a very small foot on the side that had the missing fibula, so they simply fit a prosthetic over the area - no amputation was necessary. Although I wasn't able to meet him, it brought infinite comfort to know that our child will get through this and will eventually be able to be a kid. She won't remember a thing about having her legs stuck up in the air for 8 weeks, and she will look at her colostomy bag and catheter and think nothing of it. It certainly beats having to find a bathroom while hiking in the mountains, right? :)
Anyway, our consults went extremely well. We first met Dr. Gearhart, who was incredibly personable and smart. I immediately felt at ease about our child's condition when we talked with him. You just can't beat getting treated by someone who lives for babies with cloacal exstrophy!
We then had an u/s done by Dr. Crino. It was the best u/s yet b/c it didn't reveal any new problems. (That's a first for us.) Here is what we are dealing with:
1. A beautiful little one who loves to squirm and get into the worst positions possible while being observed on u/s. She's undoubtedly shy.
2. They cannot see an open spina bifida, although it was too hard to see in the u/s. They do see some scoliosis, hemivertebrae, and overall some deformity of the spine in the lumbar and sacral regions.
3. The pelvic bones are definitely spread out pretty widely.
4. The left foot is mildly clubbed, but the leg is measuring the correct length.
5. The right foot was too hard to see, but they are pretty sure her right fibula was missing. The leg looks a good bit smaller, as well.
6. She has a moderately-sized omphalocele (O) and exstrophy of the bladder, hence confirming the diagnosis of CE.
7. They still could not determine the sex.
A couple of great things that we learned during our visit with Dr. Crino were:
1. Her cerebellum looks good, so the chances of open spina bifida are lower.
2. She has 2 healthy-looking kidneys. Oftentimes with CE, the baby is only born with 1.
3. She was moving her left foot while we were observing it, and that indicates that she's probably not paralyzed - yippee!
4. Her heart was beating at a healthy rate - another yippee! Gosh, I can't tell you how wonderful it feels to see her beautiful 4-chambered heart beating.
He believes that since I was able to deliver Jack vaginally, that I can deliver vaginally this time, as well. They only like to perform C-sections for obstetric reasons, like if labor isn't progressing well or whatever. The O doesn't look too big to fit through the birth canal. Also, since Jack hung out in my womb until past my due date (I was induced 3 days after, and I wasn't even dilated at that point), the chances of me going into pre-term labor is small, so, he doesn't feel that there is a need to move to B'more before 37 weeks. Then, I will just wait it out and hopefully go into labor naturally. At ~39 wks, they will induce if necessary.
This news was huge for me. If the above paragraph was all I heard on Monday, it would've made all the inconveniences of traveling to B'more this week worth the trouble. Our plan is actually to arrive at 36 wks, since it will be a long drive, and things like sitting in a tiny Honda Civic is getting more and more uncomfortable everyday. The Children's House at Johns Hopkins, which is a place for families to stay while their children are receiving treatment (at a much lower rate than a hotel), will not allow us to stay there until after we give birth (and that's only if they have space), so I'm in the process of looking for extended-stay hotels outside the city. My guess is that John Mark will help us get settled, then fly back to Huntsville and work, so he doesn't use up all of his vacation time before the real fun begins.
OK, back to our consults...our last visit was with a neonatologist, Dr. Woods, who was a tremendous help in our understanding of our little one's stay in the NICU. We also toured the NICU, and although there were no babies with O's or anything, we were able to see what the feeding tubes, IVs, and ventilators looked like. She said that obviously, we don't know for sure everything that will be done and in what order, but we should expect our child to have her initial surgeries within the first couple days of life. When she's born, they will take her away, cover up her O and bladder with a bag to prevent the area from drying out and from getting infected. They will make sure she's breathing and all that jazz (minor details, right?), then get her ready for surgery. The initial surgeries will probably involve 1. repairing the open spina bifida, if there is one, or other neurological issues, 2. fusing the bladder, 3. placing all her organs into her abdominal cavity if possible, 4. fusing the pelvic bones and placing her on traction. She will be highly sedated and will have to be intubated during the surgery and recovery period. After about a week or two, she will be transferred to the infant floor, where she will have a private room...this will help us b/c the NICU doesn't have much privacy (at all), and this way, one of us can spend the night with her. She will probably be in traction for weeks, which I already know will be one of the hardest things for me to deal with. I can't believe how much I took for granted all the time I spent holding and cuddling with Jack when he was a newborn. I guess we'll have to replace all that with lots of kisses (eew, nevermind, it'll be flu season, lol) and hand-holding.
So, as you might have guessed, we pretty much decided to go with Hopkins. When we arrive in October, we will meet the neurosurgeon and orthopedic surgeon, as well as see Dr. Crino for continual monitoring. My prayer is that she feels comfy enough in my womb to make it to 37 wks, so that we don't have to worry about transferring her from Huntsville or B'ham.
One of the most rewarding parts of our trip (even though I wasn't present, since I was in the middle of the u/s) was when Dr. Gearhart brought a 6 yr old boy and his mother up to meet John Mark and Jack. The boy has CE and fibular hemimelia, has gone through 26 surgeries and counting, but plays and acts like any other boy. He was in B'more to get a bladder placed in his tummy (he was born without one, I believe). He also got his belly button! (Babies with O's don't have them unless a surgeon artificially creates one.) He was born with a very small foot on the side that had the missing fibula, so they simply fit a prosthetic over the area - no amputation was necessary. Although I wasn't able to meet him, it brought infinite comfort to know that our child will get through this and will eventually be able to be a kid. She won't remember a thing about having her legs stuck up in the air for 8 weeks, and she will look at her colostomy bag and catheter and think nothing of it. It certainly beats having to find a bathroom while hiking in the mountains, right? :)
Friday, August 10, 2007
Birmingham Surgery Consults
Well, earlier this week, I was blessed to see 3 surgeons at Children's in Birmingham. My sister-in-law took notes for John Mark (who had to work) while her family entertained Jack. It was one of the most overwhelming days of my life, and by the end, I was simply numb from all of the information that was thrown at me. We are discerning at this point whether to deliver and get treated in B'ham or travel up to Johns Hopkins in Baltimore to get treated by Dr. John Gearhart, a pediatric urologist who specializes in cloacal exstrophy . He sees about 5 to 6 new CE patients each year, while most urologists only see 1 every couple of years or more. I feel very confident that if we go there, we will receive the best treatment, but the logistics of it all is intimidating. Very often, CE babies arrive prematurely, so even if we schedule a C-section for 37 weeks, the chances of me delivering unexpectantly here are high. We are flying to B'more next week to have another u/s done with a perinatologist, Dr. Crino, who is very experienced at diagnosing CE. We are also meeting with Dr. Gearhart and a neonatologist who would be treating our child while in the NICU.
So, the gist of my meetings with the B'ham surgeons are described below:
Dr. Scott Doyle, the Chief of Pediatric Orthopedic Surgery, explained his roll in the initial treatment, which usually involves adjusting and realigning the pelvic bones and placing the child in traction. Later down the line, we will need to address her clubfeet and right leg. Her leg, which is missing the fibula, is measuring 11 weeks behind, so our options will probably include amputating part of her leg and fitting her with a prosthetic. They can also lengthen her leg. Considering the dozens of other surgeries that she will have to go through, I imagine that amputation is probably the best option for her. She would probably have it done within the first year or two of her life, when she starts learning how to walk (if she is in fact ambulatory and not paralyzed). The leg lengthening is much more drawn out and sounds really painful, so in my heart, I feel that amputation would be best for her. Obviously, it's too soon to tell. Her left clubfoot doesn't appear too severe, but since there is a high chance that these deformities are a result of nerve under-development, they may have difficulties treating it conventionally (via the Ponseti Method) w/o resorting to surgery.
Dr. Joseph, the pediatric urologist, was very awesome, and did a wonderful job explaining what was involved in CE surgeries. It is an extremely complicated birth defect b/c it involves so many organs, and there is much that we won't know until she is born. He discussed the possibility of kidney dysfunction (our child's kidneys look ok, thank God), and the surgery involving the bladder fusion and genitalia. There is a big chance that she will remain incontinent, but that's not something we will know until later down the line. There's also the issue of gender. Since we haven't gotten an amniocentesis done, we aren't sure whether we have a little daughter or son. It will definitely be more complicated if it is a boy, but again, we're just going to worry about that when the time comes. In regards to her bowels, it is almost always the case that these kids have inperforate anuses. Therefore, she will most likely have a colostomy for the rest of her life. Oh yeah, and I almost forgot about her omphalocele...it was 3.8cm last week, but all we can do is pray that it doesn't grow much bigger.
Dr. Oakes, the pediatric neurosurgeon, explained to us that oftentimes, the perinatologist cannot see an open spina bifida, so we should not rule that out. If she does have spina bifida, hydrocephalus is a very common result, which will require a shunt to be placed in her brain to drain the fluid. Normally, they will drain it into the abdomen, where there is a good bit of space to add extra tubing. This is necessary b/c as the baby grows and lengthens, there needs to be enough tubing to grow with it. But in our case, since her abdomen is kind of in shambles, they will need to drain it into the heart, which does not allow for extra tubing (smaller space). So, as she grows, they will need to cut her open and add extra as needed. This is a scary prospect, but I appreciate him preparing us, b/c I was not aware of how common hydrocephalus was for spina bifida patients.
Sorry...lots of information. There is a ton more, but I'm exhausted just thinking about it! Please keep our little one in your prayers. She has a long road ahead of her, as you can see. And please pray for us as we continue to discern where to get her treated. Hopefully after our trip to Hopkins, we will have a better idea of what to do.
Love,
Michele
So, the gist of my meetings with the B'ham surgeons are described below:
Dr. Scott Doyle, the Chief of Pediatric Orthopedic Surgery, explained his roll in the initial treatment, which usually involves adjusting and realigning the pelvic bones and placing the child in traction. Later down the line, we will need to address her clubfeet and right leg. Her leg, which is missing the fibula, is measuring 11 weeks behind, so our options will probably include amputating part of her leg and fitting her with a prosthetic. They can also lengthen her leg. Considering the dozens of other surgeries that she will have to go through, I imagine that amputation is probably the best option for her. She would probably have it done within the first year or two of her life, when she starts learning how to walk (if she is in fact ambulatory and not paralyzed). The leg lengthening is much more drawn out and sounds really painful, so in my heart, I feel that amputation would be best for her. Obviously, it's too soon to tell. Her left clubfoot doesn't appear too severe, but since there is a high chance that these deformities are a result of nerve under-development, they may have difficulties treating it conventionally (via the Ponseti Method) w/o resorting to surgery.
Dr. Joseph, the pediatric urologist, was very awesome, and did a wonderful job explaining what was involved in CE surgeries. It is an extremely complicated birth defect b/c it involves so many organs, and there is much that we won't know until she is born. He discussed the possibility of kidney dysfunction (our child's kidneys look ok, thank God), and the surgery involving the bladder fusion and genitalia. There is a big chance that she will remain incontinent, but that's not something we will know until later down the line. There's also the issue of gender. Since we haven't gotten an amniocentesis done, we aren't sure whether we have a little daughter or son. It will definitely be more complicated if it is a boy, but again, we're just going to worry about that when the time comes. In regards to her bowels, it is almost always the case that these kids have inperforate anuses. Therefore, she will most likely have a colostomy for the rest of her life. Oh yeah, and I almost forgot about her omphalocele...it was 3.8cm last week, but all we can do is pray that it doesn't grow much bigger.
Dr. Oakes, the pediatric neurosurgeon, explained to us that oftentimes, the perinatologist cannot see an open spina bifida, so we should not rule that out. If she does have spina bifida, hydrocephalus is a very common result, which will require a shunt to be placed in her brain to drain the fluid. Normally, they will drain it into the abdomen, where there is a good bit of space to add extra tubing. This is necessary b/c as the baby grows and lengthens, there needs to be enough tubing to grow with it. But in our case, since her abdomen is kind of in shambles, they will need to drain it into the heart, which does not allow for extra tubing (smaller space). So, as she grows, they will need to cut her open and add extra as needed. This is a scary prospect, but I appreciate him preparing us, b/c I was not aware of how common hydrocephalus was for spina bifida patients.
Sorry...lots of information. There is a ton more, but I'm exhausted just thinking about it! Please keep our little one in your prayers. She has a long road ahead of her, as you can see. And please pray for us as we continue to discern where to get her treated. Hopefully after our trip to Hopkins, we will have a better idea of what to do.
Love,
Michele
Wednesday, August 1, 2007
26 weeks...another update
Well, we just got back from B'ham, where we had another u/s done. Good news first: her heart and brain still look great. And it doesn't look like the liver is inside the omphalocele. Bad news: her condition may be way more complicated than we had originally thought. The perinatologist thinks she has cloacal exstrophy, which is a very rare congenital birth defect. We aren't even sure if it's a girl (hopefully it is, b/c things sound way more complicated if male genitalia are involved). The reasons the doctor suspects it's cloacal exstrophy is b/c her pelvic area is wider, as if during early development, that area didn't fuse together properly. It was even apparent to us on the u/s when we looked at the spinal column. As it reaches the sacrum, the parallel vertebrae curve outward. Omphaloceles are also a result of this condition. She cannot see the bladder, which she suspects is because it is split in two. We saw no opening through the skin, so spina bifida is not probable.
In regards to her extremities, the left foot doesn't look severely clubbed. The right foot was too hard to see, but she is banking on it being severe and irreparable, mainly b/c her fibula isn't present. (Yes, a slightly minor detail they failed to notice at the last u/s.) Without a fibula, obviously her Achilles tendon and whatever else can't function properly. Her right calf is also smaller than her left, so she assumes there is less muscle mass, as well. I can't exactly imagine what not having a fibula is like, but the likelihood of her having use of that leg seems minimal.
So, our priorities are to safely deliver her and have immediate surgery on her omphalocele (although, this may not be possible...her abdominal area is measuring small, so there may not be room initially for whatever organs need to be squeezed back in). In addition, they need to fuse the two halves of the bladder together (this also needs to be done to the uterus, clitoris, penis, or whatever else is involved). Our other major concern is making sure there is proper urine and bowel output...often with this condition, the rectum is closed, and there are issues with the nerves controlling the lower urinary tract. The clubfeet will definitely take a back burner until she is stable.
But on a brighter note, she looks beautiful. We saw a wonderful profile of her face, and she looked just like me. ;-) I feel her moving around constantly, and we are so anxious to finally meet her. We will most likely deliver in B'ham b/c they have the only pediatric urologist in the state. It will be nice to have a pediatric neurosurgeon available, too. I asked the perinatologist if there are any physicians in the U.S. who are more experienced with this type of diagnosis, but she thinks it is too rare for any one doctor to be considered an "expert".
So, please keep praying. I'm sorry if my post doesn't make a lot of sense. Hopefully, we'll have more concrete answers soon, although I'm guessing we won't know what's really going on until she is born.
Thanks again and take care,
Michele
In regards to her extremities, the left foot doesn't look severely clubbed. The right foot was too hard to see, but she is banking on it being severe and irreparable, mainly b/c her fibula isn't present. (Yes, a slightly minor detail they failed to notice at the last u/s.) Without a fibula, obviously her Achilles tendon and whatever else can't function properly. Her right calf is also smaller than her left, so she assumes there is less muscle mass, as well. I can't exactly imagine what not having a fibula is like, but the likelihood of her having use of that leg seems minimal.
So, our priorities are to safely deliver her and have immediate surgery on her omphalocele (although, this may not be possible...her abdominal area is measuring small, so there may not be room initially for whatever organs need to be squeezed back in). In addition, they need to fuse the two halves of the bladder together (this also needs to be done to the uterus, clitoris, penis, or whatever else is involved). Our other major concern is making sure there is proper urine and bowel output...often with this condition, the rectum is closed, and there are issues with the nerves controlling the lower urinary tract. The clubfeet will definitely take a back burner until she is stable.
But on a brighter note, she looks beautiful. We saw a wonderful profile of her face, and she looked just like me. ;-) I feel her moving around constantly, and we are so anxious to finally meet her. We will most likely deliver in B'ham b/c they have the only pediatric urologist in the state. It will be nice to have a pediatric neurosurgeon available, too. I asked the perinatologist if there are any physicians in the U.S. who are more experienced with this type of diagnosis, but she thinks it is too rare for any one doctor to be considered an "expert".
So, please keep praying. I'm sorry if my post doesn't make a lot of sense. Hopefully, we'll have more concrete answers soon, although I'm guessing we won't know what's really going on until she is born.
Thanks again and take care,
Michele
Monday, July 16, 2007
24 weeks and counting...
I just wanted to give a synopsis on my family before I started posting updates on our current situation. My husband, John Mark, and I have been married for a little over 2 years, and we have a beautiful little son, Jack, who is 13 months old. We are devout Roman Catholics and hope that we can raise our children to be holy and devout disciples of Christ. John Mark is an electrical engineer and is studying for his master's degree in network security. The ultimate computer nerd! :) I am a stay-at-home mom, and I love every minute of it (well, most of the time). We are both graduates of Franciscan University of Steubenville. I went to graduate school at Emory University to study molecular pharmacology, until I felt called to move to my hubby's town a few hours away to get married and raise a family.
Jack is the most wonderful little guy! As a baby, he was incredibly laid back and independent. At this point, he looks, walks, and acts like he's 2, so I constantly have to remind myself that he's barely a year old! He really is the most amazing blessing in our lives...I had no clue how fulfilling it would be to be a mother until he landed in my arms. I often find myself staring at him in wonder and awe while he plays, flips through his books, dances to music, or chases the cat while laughing hysterically. I'm sure most parents know what that's like.
When Jack was about 8 mos old, we found out we were expecting again! Our little girl, Bernadette, is due on November 7, 2007. We are currently 24 weeks pregnant. At around 18 weeks, I had a standard ultrasound (u/s) scheduled. My OB noticed a slight arrhythmia in her heart rate, which is actually relatively common, so I only freaked out a little bit. He scheduled me for another u/s 3 weeks later and had planned on referring me to a perinatologist to study the heart for any defects or malformations. I went to my next appointment a little nervous, but hopeful that her heart was strong and healthy. And I was right! However, my OB then noticed that she had a protrusion around her umbilical cord that he believed to be an omphalocele. I was pretty shaken up by this information, not really knowing anything about what this meant for our daughter. We ended up seeing the perinatologist in Birmingham to confirm the diagnosis. And we got even more hard news. Oftentimes, a baby with an omphalocele is found to have other birth defects. Thankfully, her heart, lungs, and brain appeared normal, so the chance of it being chromosomal was slim. But he discovered that her sacrum, or tail bone, was small and poorly formed. He also noticed that she had clubfeet. The omphalocele appeared to be moderate in size and included her intestines, part of her liver, and possibly her bladder. I guess only time will tell how severe her condition is and what can be done about it. We don't know if she will ever be able to walk...if there is nerve damage at the base of her spine, which is likely since she also developed clubfeet (her feet are controlled by sacral nerves), she may be paralyzed and/or have bowel and bladder issues. Needless to say, the wait is excruciating. Simply waiting until the next ultrasound feels like an eternity.We are incredibly blessed to have so many faithful people praying for Bernadette. And we have undoubtedly received so much grace from those prayers. This is certainly the most difficult thing we have ever gone through...I have felt so many mixed feelings - from anger, to sadness, to fear, to joy that she has made it this far, to more fear...
So, keep praying! We will keep you posted on the upcoming ultrasounds, consults with surgeons, and any other news that we hear.
God Bless,
Michele, John Mark, Jack, and Bernadette
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