Yesterday, David and I drove to Indy to have an MRI done of Hope. We went to St. Vincent, which is where all of our care will be happening. The Peyton Manning Children's Hospital is part of St. Vincent, and while we won't be in the children's hospital, apparently my MRI was scheduled through them. So, much to my delight, I got a reminder call from Peyton Manning this week! It took me a minute to realize that it was just a recording of his voice, but that was definitely a funny moment, picking up the phone and hearing, "Hi! This is Peyton Manning calling!"
The MRI was long and fairly painful for me (imagine pregnant hips and knees lying sideways on a rock-hard board for an hour), but they were able to get the pictures that they wanted, both of her brain, and other parts of her body. After the MRI, we met our fetal care coordinator, Rosie, who took us over to neurology for our meeting with the pediatric neurologist.
So, where to start with the information? I have so much of it that I'm not sure I'll be able to make it all make sense for you all, but here goes!
On a scale of large-medium-small, Hope's encephelocele is SMALL! The neurologist said that this is a good sign. And, the amount of brain matter it contains is also small! Unfortunately, the amount of brain matter could change (get larger) over the next 3 months, so that is definitely something to pray for: that it will not grow any larger. The part of her brain that is in the sac will not grow as well as it should. It's receiving less blood and oxygen than it should be getting, and there is also the possibility that it is having pressure put on it as it squeezes out through the opening in her skull. What this means for Hope, after she's born, is hard to tell. The neurologist focused more on physical bodily functions being affected: ability to walk and write, and worst-case: Hope's abilities to breathe and swallow being affected.
The other thing that they were able to see with the MRI is that the bone structure in Hope's face is otherwise normal--she does not have facial deformities, which would indicate more extensive damage. While we still cannot be sure that she does not have a chromosomal disorder, the fact that everything else in her body looks good is a good sign.
We also learned that in most cases, surgery is done on the baby within 24 hours of their birth. The only reason they would not do surgery that quickly is because the baby's vital signs are not strong enough to do surgery. Either way, that is a scary scenario. We did not talk to a neurosurgeon, so we don't know much more than that about the surgery, but at least that is something we can be thinking about and trying to prepare for.
Some of the peripheral things we learned:
*Rosie described what will happen during and after my C-Section, and how Hope will be handled.
*Rosie described life in the NICU for us. I'm not sure what I was expecting, but her descriptions of how long it would be before I am able to hold Hope (2-3 days after she's born) were painful for me to hear. In the midst of extreme sorrow for me in that, David has encouraged me that without modern NICUs and technology, Hope would die. As much as I hate it, this is for her good, and we are praying that God will use the technology to save her.
*That there really is nothing I could've done to prevent this. We even talked about folic acid, and after discussing my diet with the doctor, she said that she does not believe that a nutritional deficiency caused this. Right now, there is nothing I can do to make it better. I was nervous about continuing to exercise, but that will not help or hurt Hope.
*Because of the neurological damage that Hope will most likely have, her immune system is not as strong as a normal child's would be. She will be more susceptible to common flu and cold bugs, and it will be harder for her to fight and overcome this. With 4 other children, this worries us. In the past 8 weeks, we have had walking pneumonia, sinus infections, bronchitis, pink eye, Laura's ear-infection-that-will-not-die, and that nasty, nasty stomach bug that went around church (yes, that was the most miserable I have EVER seen David). While we know that there is no way we can protect Hope from getting sick, we will be trying to think about strategies for keeping our house a little more germ-free.
Here are specific items for pray for:
--the the amount of brain matter in the the encephelocele will not grow larger
--that Hope will not develop hydrocephalus (too much fluid pushing against her brain) while still unborn
--that David and I can continue to keep life as normal as possible for the other kids right now
--that we will trust God with our sweet baby, and not let anxiety take over. The statistics are still dauntingly against Hope, but we know that He holds her in the palm of His hands, that He sustains her, and that He created her exactly the way she is for a reason.
I will see Dr. Hiett down here in Bloomington for another ultrasound in 2 weeks. After that, when I am about 34 weeks, we will be scheduled up in Indy for a meeting with Dr. Hiett (my super-OB), the neonatologist (the super-pediatrician), the neurosurgeon (the guy who uses the knife), a tour of the NICU, and an amniocentesis. In between, we will schedule a date for my c-section, which will be at about 38 1/2 weeks. I am thankful that I do not have to be driving up to Indy every week, or even every two weeks, and that these last 3 months before Hope is born can be as normal as possible for the big kids.
Saturday, January 29, 2011
Thursday, January 20, 2011
Hope update
This has been a week of waiting. We were under the impression last week, after meeting with the doctor, that we would be driving up to Indy at the end of this week for more testing and meeting with doctors. However, the scheduler did not contact me until today to set those things up, and it turns out we were mistaken in our impression of when the next set of tests would happen. But, after talking to her today, I have a better picture of what's in store for the next few weeks.
We will be going up to Indy next Friday to have an MRI done (of Hope, not me). After the MRI, we will meet with neurology (one doctor? the whole department? a team of doctors? I don't know). They will be able to discuss their preliminary findings from the MRI in that appointment, and we will be able to ask our questions about Hope's brain at that time. We're quickly realizing that we probably won't get many answers, but will just need to wait, trusting in God, until she's born to see how extensive the damage is.
I will continue seeing Dr. Hiett, who is now my OB, but he doesn't need to see me more than once a month at this point. Fortunately, I can make those appointments down here in the Bloomington office for the Fridays that he is here. So that will save us a lot of driving to Indy. As far as the amniocentesis goes, David and I were still undecided about what we wanted to do when I talked to the scheduler today. She was able to tell us, though, that we can wait and do the amniocentesis at a later date, which is what we were hoping for. We would still like to do it before Hope is born, but doing it closer to her due date will make the possibility of pre-term labor less dangerous for her.
One of the things that I'm thankful for today is the scheduler who has been "assigned" to me. She is a woman who works in Dr. Hiett's office, and her main job is to be the go-between between all the different teams of doctors, the hospital, and us. I cannot tell you what a relief it is to have somebody like that. Up until today, I didn't even have phone numbers I could call to ask questions, and she gave me several numbers. She will also be sending me a packet in the mail with all her info, the doctor's info, the hospital's info, and my scheduled appointments at this time. And, unlike most specialized doctors, she has the ability to speak to normal people :) She understands our medical situation, but she does not treat is as another unique medical problem--she treats us like people. And I'm not saying that the doctors don't know we're people. They just tend to be super, duper smart, and not so much in tune with how the patient feels when you tell them something about their baby's brain. I think that's called "bedside manner." Well, she's got it. Her name is Rosie, so I should have no trouble remembering that over the next few months.
So, that's where we are today. Another week of waiting. But it's not waiting with nothing to do. Life keeps on going, school for the kids, laundry, cleaning bathrooms, and cooking dinner keeps me occupied. And in the quiet moments at the end of the day, I get to sit and feel Hope move around, as she wakes up right when I'm ready to lie down. David and I both enjoy those times, and try to interact with her now as much as possible. For now, I'm able to help keep her safe, and I want to enjoy that time as much as I can.
I have realized this week, in talking to several different people, that there might be some confusion about Hope's problem. She has a condition called "encephelocele", and the cyst on the back of her read is also referred to as "an encephelocele." The second, especially, sounds very similar to a different, but similar condition, called "anencephaly." If you'd like, you can google those terms, but beware--the pictures are intense. Hope does not have anencephaly. That is a condition (also in the family of neural tube defects, like encephelocele and spina bifida) where the baby's skull and brain fail to form, almost at all. Sadly, it is a condition that is not compatible with life outside the womb. The babies born with this deformity usually only survive minutes or hours. As I have poked around on the web this week, I have cried for the mothers of some of these babies who have shared their stories on blogs, and been oh-so-thankful that Hope does not have that birth defect. While Hope's chances are still grim, she does have a chance at survival, and she even has a tiny chance at a completely normal life, which is certainly what we're praying for.
So, until next week, that's it! I will certainly write more if anything of import happens, but between the above-mentioned school, laundry, dinner, and bathrooms, I manage to fill my days pretty thoroughly. Thank you all again for your prayers and support--we would be complete wrecks without all of you (right now, I'm only half a nutcase:).
We will be going up to Indy next Friday to have an MRI done (of Hope, not me). After the MRI, we will meet with neurology (one doctor? the whole department? a team of doctors? I don't know). They will be able to discuss their preliminary findings from the MRI in that appointment, and we will be able to ask our questions about Hope's brain at that time. We're quickly realizing that we probably won't get many answers, but will just need to wait, trusting in God, until she's born to see how extensive the damage is.
I will continue seeing Dr. Hiett, who is now my OB, but he doesn't need to see me more than once a month at this point. Fortunately, I can make those appointments down here in the Bloomington office for the Fridays that he is here. So that will save us a lot of driving to Indy. As far as the amniocentesis goes, David and I were still undecided about what we wanted to do when I talked to the scheduler today. She was able to tell us, though, that we can wait and do the amniocentesis at a later date, which is what we were hoping for. We would still like to do it before Hope is born, but doing it closer to her due date will make the possibility of pre-term labor less dangerous for her.
One of the things that I'm thankful for today is the scheduler who has been "assigned" to me. She is a woman who works in Dr. Hiett's office, and her main job is to be the go-between between all the different teams of doctors, the hospital, and us. I cannot tell you what a relief it is to have somebody like that. Up until today, I didn't even have phone numbers I could call to ask questions, and she gave me several numbers. She will also be sending me a packet in the mail with all her info, the doctor's info, the hospital's info, and my scheduled appointments at this time. And, unlike most specialized doctors, she has the ability to speak to normal people :) She understands our medical situation, but she does not treat is as another unique medical problem--she treats us like people. And I'm not saying that the doctors don't know we're people. They just tend to be super, duper smart, and not so much in tune with how the patient feels when you tell them something about their baby's brain. I think that's called "bedside manner." Well, she's got it. Her name is Rosie, so I should have no trouble remembering that over the next few months.
So, that's where we are today. Another week of waiting. But it's not waiting with nothing to do. Life keeps on going, school for the kids, laundry, cleaning bathrooms, and cooking dinner keeps me occupied. And in the quiet moments at the end of the day, I get to sit and feel Hope move around, as she wakes up right when I'm ready to lie down. David and I both enjoy those times, and try to interact with her now as much as possible. For now, I'm able to help keep her safe, and I want to enjoy that time as much as I can.
I have realized this week, in talking to several different people, that there might be some confusion about Hope's problem. She has a condition called "encephelocele", and the cyst on the back of her read is also referred to as "an encephelocele." The second, especially, sounds very similar to a different, but similar condition, called "anencephaly." If you'd like, you can google those terms, but beware--the pictures are intense. Hope does not have anencephaly. That is a condition (also in the family of neural tube defects, like encephelocele and spina bifida) where the baby's skull and brain fail to form, almost at all. Sadly, it is a condition that is not compatible with life outside the womb. The babies born with this deformity usually only survive minutes or hours. As I have poked around on the web this week, I have cried for the mothers of some of these babies who have shared their stories on blogs, and been oh-so-thankful that Hope does not have that birth defect. While Hope's chances are still grim, she does have a chance at survival, and she even has a tiny chance at a completely normal life, which is certainly what we're praying for.
So, until next week, that's it! I will certainly write more if anything of import happens, but between the above-mentioned school, laundry, dinner, and bathrooms, I manage to fill my days pretty thoroughly. Thank you all again for your prayers and support--we would be complete wrecks without all of you (right now, I'm only half a nutcase:).
Wednesday, January 12, 2011
Victoria Hope
Last Monday (January 10th), we got the chance to see our unborn baby again. I had an ultrasound at 21 weeks, which revealed a baby girl. The technician was able to get most of the pictures she needed, but our baby would not move her head in the right direction to get the head shots. I was scheduled for another ultrasound, and I went in on Monday (almost 25 weeks), hoping that she would be positioned correctly and willing to let them take her picture. While she never gave us a full shot of her face, she was in a better position to take the pictures of her head that they needed.
After the ultrasound, I went in for my routine check-up with my midwife. After a while she came in and told me that they'd found an abnormality on our baby's ultrasound. Our baby has a birth defect called an encephalocele, located in the occipital region (meaning the back of her skull--closer to her neck). This is a disorder similar to spina bifida--a neural tube deficiency. Our basic understanding at this point is that her skull failed to close properly around her brain, leaving a hole at the back of her skull where an external sac filled with spinal fluid, meningeal tissue, and/or brain tissue would form. My midwife was grim about the chances for our baby. She was very careful to make sure I understood that her chances of surviving the pregnancy were 1 in 5, and that if she did survive, she would most likely have neurological damage. In God's providence, a maternal and fetal medicine specialist (Dr. Hiett) was coming down from St. Vincent's hospital in Indy on his once a month to my doctor's practice on Friday, and we were scheduled to have a more extensive ultrasound with him.
Needless to say, David and I had a long and painful week from Monday to Friday. But even in our week of extreme uncertainty, God was faithful to us in many ways, showing Himself to us in this situation. We knew immediately that we wanted to name her before Friday, and as soon as possible. Her name is Victoria Hope, and we will call her Hope.
Victoria--for the victory that Christ has already had over sin and death, and the final victory that He will have in the end.
Hope--representing the hope that we have now that God will strengthen her and allow her to grow, and if not, the hope that we will have in heaven to meet her someday. Romans 8:24-25 is especially what came to my mind with that name.
As Friday came closer, we were able, through online research and talking to a nurse from Dr. Hiett's office, to hone in on two areas where we were hoping to get some answers:
1. Does Hope have more extensive physical abnormalities, such as a heart defect, or facial malformations? These could be indicative of a chromosomal disorder, and would make her chances worse.
2. Does Hope have brain tissue in the sac on the back of her head? While the size of the sac could very considerably, it is the contents of it that are most telling. Fluid and meningeal tissue are better, brain tissue is worse.
While Hope did not show us her face to look for facial problems, the doctor was able to see that she is otherwise healthy. She has 5 fingers on each hand, her arms and legs are the right length, and they move freely, not in a constricted fashion. Her heart also looks great. One of my favorite quotes from yesterday was the doctor looking carefully at her heart, and then saying, "Her heart is gorgeous!" We praise God this all these!
Dr. Hiett was also able to look carefully at her skull. He showed us the gap in her skull, and then the sac, which is about 1/4 the size of her head. He was able to see clearly that there is brain tissue in the sac. He said it was part of cerebellum. He basically refused to answer questions about what that could mean for Hope, deferring all answers to the neurosurgeon that we will meet with.
We did not get any more answers about what our baby's exact chance of survival is.
We will be going up to Indy this week for a more detailed ultrasound, hopefully a meeting with a neurologist, and possibly an amniocentesis. The amniocentesis is the decision we need to make this week that we are asking for prayer for. It is a procedure where they go in with a needle and take out amniotic fluid. They will get one of the baby's sloughed off cells out of the fluid, and analyze it for chromosomal disorders. Hope's chances of having a chromosomal disorder would be 50%, but we are hoping they are lower, seeing that we have 4 normal children, and that Hope did not have any other deformities that we would see. However, there is still a chance. The risks of the procedure are 1/300 that I would go into pre-term labor after the procedure. We are trying to weigh those risks against the benefit of the knowledge of a chromosomal disorder would be for us. While it would not change anything we could do for her now, or cause us to abort, it could have some implications for how we care for her in the first weeks of her life if she has a fatal chromosomal disorder. The cells take 1-2 weeks to analyze, so while we could do the test after Hope is born, if she will die soon after birth, we would like to know that beforehand so we can care for her accordingly.
Here are the things that I have taken hope and encouragement from:
*The doctor said several times that we are far along in the pregnancy. I don't feel that far along, so it surprised me. Upon reflection and some googling, we realized that most babies with an encephelocele miscarry before 20 weeks.
*Hope moves a ton. She doesn't feel any different to me than the other kids did. While the doctor would not say that this is a good sign, he did say that if she was not moving, he would tell us that she had an extremely small chance of surviving.
*Most babies with an encephelocele are aborted. For that reason, the information about after-birth treatment and chances is limited, and doctors naturally tell you the worst. We have hope for her, despite all the nay-saying of websites and doctors.
In the midst of confusion, pain, and uncertainty, we have felt the love of our church family through this week. As we started telling our family and closest friends, we received prayers, hugs, love, and offers of babysitting. We were asked to come to the monthly elder's meeting so that the elders could lay hands on us and pray for us. As the news is starting to spread further, we are again astonished at how many people are praying for us, and for baby Hope. We are so thankful for all of you, and we know that we would not be able to make it through this time without the love of a church family. And through all of you, we feel God's hand upon us. We know that He works through His people, and in your love and care for us, we know that He is loving and caring for us. Thank you for being a tangible example of the work of God. Our trust is in God, our hope for baby Hope lies in the power of God, and we believe that He works all things for our good because He loves us.
After the ultrasound, I went in for my routine check-up with my midwife. After a while she came in and told me that they'd found an abnormality on our baby's ultrasound. Our baby has a birth defect called an encephalocele, located in the occipital region (meaning the back of her skull--closer to her neck). This is a disorder similar to spina bifida--a neural tube deficiency. Our basic understanding at this point is that her skull failed to close properly around her brain, leaving a hole at the back of her skull where an external sac filled with spinal fluid, meningeal tissue, and/or brain tissue would form. My midwife was grim about the chances for our baby. She was very careful to make sure I understood that her chances of surviving the pregnancy were 1 in 5, and that if she did survive, she would most likely have neurological damage. In God's providence, a maternal and fetal medicine specialist (Dr. Hiett) was coming down from St. Vincent's hospital in Indy on his once a month to my doctor's practice on Friday, and we were scheduled to have a more extensive ultrasound with him.
Needless to say, David and I had a long and painful week from Monday to Friday. But even in our week of extreme uncertainty, God was faithful to us in many ways, showing Himself to us in this situation. We knew immediately that we wanted to name her before Friday, and as soon as possible. Her name is Victoria Hope, and we will call her Hope.
Victoria--for the victory that Christ has already had over sin and death, and the final victory that He will have in the end.
Hope--representing the hope that we have now that God will strengthen her and allow her to grow, and if not, the hope that we will have in heaven to meet her someday. Romans 8:24-25 is especially what came to my mind with that name.
As Friday came closer, we were able, through online research and talking to a nurse from Dr. Hiett's office, to hone in on two areas where we were hoping to get some answers:
1. Does Hope have more extensive physical abnormalities, such as a heart defect, or facial malformations? These could be indicative of a chromosomal disorder, and would make her chances worse.
2. Does Hope have brain tissue in the sac on the back of her head? While the size of the sac could very considerably, it is the contents of it that are most telling. Fluid and meningeal tissue are better, brain tissue is worse.
While Hope did not show us her face to look for facial problems, the doctor was able to see that she is otherwise healthy. She has 5 fingers on each hand, her arms and legs are the right length, and they move freely, not in a constricted fashion. Her heart also looks great. One of my favorite quotes from yesterday was the doctor looking carefully at her heart, and then saying, "Her heart is gorgeous!" We praise God this all these!
Dr. Hiett was also able to look carefully at her skull. He showed us the gap in her skull, and then the sac, which is about 1/4 the size of her head. He was able to see clearly that there is brain tissue in the sac. He said it was part of cerebellum. He basically refused to answer questions about what that could mean for Hope, deferring all answers to the neurosurgeon that we will meet with.
We did not get any more answers about what our baby's exact chance of survival is.
We will be going up to Indy this week for a more detailed ultrasound, hopefully a meeting with a neurologist, and possibly an amniocentesis. The amniocentesis is the decision we need to make this week that we are asking for prayer for. It is a procedure where they go in with a needle and take out amniotic fluid. They will get one of the baby's sloughed off cells out of the fluid, and analyze it for chromosomal disorders. Hope's chances of having a chromosomal disorder would be 50%, but we are hoping they are lower, seeing that we have 4 normal children, and that Hope did not have any other deformities that we would see. However, there is still a chance. The risks of the procedure are 1/300 that I would go into pre-term labor after the procedure. We are trying to weigh those risks against the benefit of the knowledge of a chromosomal disorder would be for us. While it would not change anything we could do for her now, or cause us to abort, it could have some implications for how we care for her in the first weeks of her life if she has a fatal chromosomal disorder. The cells take 1-2 weeks to analyze, so while we could do the test after Hope is born, if she will die soon after birth, we would like to know that beforehand so we can care for her accordingly.
Here are the things that I have taken hope and encouragement from:
*The doctor said several times that we are far along in the pregnancy. I don't feel that far along, so it surprised me. Upon reflection and some googling, we realized that most babies with an encephelocele miscarry before 20 weeks.
*Hope moves a ton. She doesn't feel any different to me than the other kids did. While the doctor would not say that this is a good sign, he did say that if she was not moving, he would tell us that she had an extremely small chance of surviving.
*Most babies with an encephelocele are aborted. For that reason, the information about after-birth treatment and chances is limited, and doctors naturally tell you the worst. We have hope for her, despite all the nay-saying of websites and doctors.
In the midst of confusion, pain, and uncertainty, we have felt the love of our church family through this week. As we started telling our family and closest friends, we received prayers, hugs, love, and offers of babysitting. We were asked to come to the monthly elder's meeting so that the elders could lay hands on us and pray for us. As the news is starting to spread further, we are again astonished at how many people are praying for us, and for baby Hope. We are so thankful for all of you, and we know that we would not be able to make it through this time without the love of a church family. And through all of you, we feel God's hand upon us. We know that He works through His people, and in your love and care for us, we know that He is loving and caring for us. Thank you for being a tangible example of the work of God. Our trust is in God, our hope for baby Hope lies in the power of God, and we believe that He works all things for our good because He loves us.
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