Make no mistake, Melody is our miracle. Just the way she is. I have struggled over the past three weeks as well-intentioned people have suggested that if we just have faith, God will heal Melody. Often the suggestion is that we "deserve" a miracle. That God would not allow us to have a child who is not physically perfect. Don't get me wrong, I believe God can and does perform miracles. However, I believe Melody is our miracle, just the way she is. If God chooses to give her completely normal physical function, all the praise and glory will belong to Him alone. But, if He chooses to give Melody to us with imperfections, He will still be God. I don't need a miracle to know that God is God. I already have one. We don't know what Melody's life will be like, but we know that she is God's precious creation and gift to us, just the way she is. We love her and she doesn't need to be perfect to be loved and treasured by our family. What message would that send to our other children anyway? Only perfection is valuable? If there is anything "wrong" with you, we won't love you? Of course not, we love all our children, the good and the bad. Oh, don't get me wrong, I'd love to shield Melody from difficulty and struggle. My heart aches when I think of the surgeries and physical hurdles she may face in her life. But, through the struggle, we will be there with her and God will be there with us.
I just listened to the following song for the first time since we heard the news of Melody's spina bifida. It puts into words so eloquently some of my thoughts. It will make you cry, but it gives me hope. Yes, we have our miracle, even if miracles sometimes hide.
Sometimes Miracles Hide
By Bruce Carroll
They were so excited it was coming to be, two people so in love
and now soon there would be three, for many years they planned it. Now soon it would be true, She was picking out the pink clothes, he was looking at the blue.
The call came unexpected the doctor had bad news, Some tests came back
and things weren't right, said you're gonna have to choose,
"I'll wait a week for your decision" and then the words cut like a knife ,
"I'm sure everyone will understand if you want to end its life".
Though they were badly shaken they just had no choice,
Because they knew God creates no accidents and they were sure they heard His voice Sayin'.
(chorus)
sometimes miracles hide, and God will wrap some blessings in disguise
and you may have to wait this lifetime to see the reasons with your eyes,
cause sometimes miracles hide
It seemed before they knew it the appointed day arrived,
with eager apprehension they could barely hold inside,
The first time they laid eyes on her confirmed the doctors fears
but they held onto God promise they were sure they both could hear.
(chorus)
Though she was not like the other girls they thought she was the best,
and through all the years of struggle neither whispered one regret.
And the first day that she started school and took her first bus ride,
they'd remembered the words that God had spoke and they both broke down and cried.
You see to them it did not matter why some things in life take place,
cause they just knew the joy they felt when they'd look into her face.
They learned that sometimes miracles hide, they said God Has wrapped our blessing in disguise and we may have to wait this lifetime to see the reasons with our eyes, we know sometimes miracles hide. We've learned sometimes miracles hide.
Saturday, May 30, 2009
Friday, May 29, 2009
11 Years!
11 years ago today, David was born. Thus began our journey into parenthood. What a fun journey it is, too. We are so proud of our sensitive son. He is the first to say, "Mom, you need a hug." He is most in tune to how I feel and the first to do something to help. He is amazing with his siblings and such a great help around the house. Today he relished in getting chocolate chip pancakes for breakfast and lots of LEGO gifts. LEGO Star Wars Wii and a LEGO t-shirt from us, LEGO sets from Aunt Wendy & Uncle Dave and Uncle Tim. He got a money gift from Grandma and Grandpa, which he is adding to, can you guess? His LEGO fund, that's right. His school's science fair was today and I bet you can't guess what his project was on? That's right, LEGO. He made a wind tunnel and tested the aerodynamics of his LEGO Star Wars vehicles. We are so thankful for our eldest son, what a gift!
Thursday, May 28, 2009
What's Next?
Besides a lot of waiting, that is? In two weeks we will have another ultrasound. The doctors want to keep a close eye on Melody over then next few months. They want to make sure she is growing properly as she may be inclined to be small. How they're going to tell slow growth versus genetics from my side of the family, I'm not sure. We are waiting for appointments with the neurosurgeon who will do Melody's repair surgery at birth as well as an appointment with the pediatrician who specializes in spina bifida. We still have lots of questions, but for now we have time.
Tuesday, May 26, 2009
Positive Results and A Closed Door
I saw the doctor this afternoon for a quick check-up and a LOT of paperwork. Apparently, this is the first time I have "officially" been seen by the high-risk/fetal medicine office, so the paperwork was endless. The exciting news is that the amniocentesis results did not show any additional problems. Yes, Melody is a girl and there are no chromosome abnormalities. Praise God. However, the doctor was in a rush as it was already after 5pm and he still had 2 other patients. We weren't too confident that he had all the information available to him from the amnio.
This morning I spoke with the lady at the MOMS study and was informed the team will not consider me a candidate because of my history of preterm labor. (Both our girls were born at 36 weeks.) I expected to be more relieved than I feel. While I was checking in at the doctor this afternoon, I saw this quote at the doctor's office:
"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." Alexander Graham Bell
We have been praying for God's leading, so we will trust His hand in closing this door. I will try and not to focus on the closed door, but on the open ones in front of us. I must admit, it felt better to be able to do something. Instead, we will be waiting until Melody's birth to really be able to do something. I must admit waiting is not my strong suit. Have you ever noticed how many bible verses have to do with waiting? I guess I'll be working on my waiting skills.
Psalm 27:14 "Wait for the LORD, be strong and take heart and wait for the LORD.
This morning I spoke with the lady at the MOMS study and was informed the team will not consider me a candidate because of my history of preterm labor. (Both our girls were born at 36 weeks.) I expected to be more relieved than I feel. While I was checking in at the doctor this afternoon, I saw this quote at the doctor's office:
"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." Alexander Graham Bell
We have been praying for God's leading, so we will trust His hand in closing this door. I will try and not to focus on the closed door, but on the open ones in front of us. I must admit, it felt better to be able to do something. Instead, we will be waiting until Melody's birth to really be able to do something. I must admit waiting is not my strong suit. Have you ever noticed how many bible verses have to do with waiting? I guess I'll be working on my waiting skills.
Psalm 27:14 "Wait for the LORD, be strong and take heart and wait for the LORD.
Monday, May 25, 2009
Melody Annalise Allen
Here is our precious Melody at 20 weeks. These are the 4-D ultrasounds so that explains the "alien" look. :) 
Melody Annalise Allen
Melody Annalise Allen - 10 week ultrasoundYes, it is true, our baby girl has a name. The events of the last few weeks have made having a name for our baby very important to us. Elizabeth has had lots of name suggestions since the very beginning.
We chose Melody as we hope her life will be a sweet song to the Lord. Despite the physical challenges she faces, our prayer is that she would still face life with joy.
Elizabeth chose her middle name, Annalise. Anna means "graceful satisfaction" and Lise means "devoted to God." We love both those meanings.
Ann is also Kevin's Mom's middle name and his Grandmother's name was Anna, so we also chose it in honor of Grandma Carol and Great-grandmother Anna.
Other than Elizabeth, the other kids were pretty flexible on a name. Joel wants to name her Bumblebee, so I told him he can use that as a nickname if he likes. David and Hannah were just concerned that we continue the alphabetical order of their names and that it start with a different letter than the rest of them. Both of these were purely coincidental to Kevin and I. In fact, I didn't even realize the alphabetizing until the kids mentioned it.
Saturday, May 23, 2009
Rested ... so now to tackle the MOMS study
I had a wonderful couple of days with my cousin, Kristie Robinson. We ate at In & Out and Coldstone, soaked in the "hot" tub (don't worry, my feet only), scrapbooked, read books, slept in and did lots of talking. I feel like a new person. It is amazing how emotional drain can really wear you down physically. My cousin is a nurse and a mother of a wonderful son who has special needs, so she was able to answer a lot of my questions and encourage me so much.
So.. now that I am rested, I will try and tackle the MOMS study, Management of Myelomeningocele Study. Doctors are able to do surgery on babies with spina bifida before birth in order to fix the spinal lesion which is routinely fixed at birth. This surgery has been being done for over 10 years. However, currently it is only being done at 3 hospitals and you must be accepted into the study to have it done. We have done some research and continue pursuing being accepted into the study. We are in the process of faxing and mailing the MANY medical records that they need. The surgery must be done before 25 weeks, so this option is only available to us for about 4 more weeks.
Once the MOMS study receives our records they will decide whether we qualify or not. There are reasons we many not, but the biggest one is that both Elizabeth and Hannah were born at about 36 weeks. They do not usually accept you into the study with a history of pre-term labor. If they decide we qualify for the study, we will be sent to San Francisco, Nashville, or Philadelphia for 2-3 days of consults and testing with all the doctors involved in doing the surgery. They would try to send us to San Francisco, but there are no guarantees. During that time we would get to ask lots of questions and get all the information. At the end of the time, we would decide whether we want to participate in the study, and the doctors would also decide if we are still a candidate for the study.
If both sides decide to participate in the study, we would then be placed into the "randomization" process. 50% of participates receive the surgery in-utero, and 50% receive the standard of care surgery at birth. If we received the standard of care, we would be sent home and would return to San Francisco (or other location) and the baby would be delievered by c-section at 37 weeks and have surgery at that time. If we received the in-utero surgery, it would be scheduled within 1-2 days and I would need to stay there until the baby it born by c-section at 37 weeks. Obviously, that would be a real challenge for our family.
The study provides travel, meals and lodging for me and a support person who must be with me during the entire time. It does not, however, provide for our other children.
We continue to pursue this option as long as the Lord leaves the door open. If the door shuts, we will trust His hand. Are we positive the in-utero surgery is the right path? No, we know that it is a long-shot. But, if all the doors open,we will trust that our God, who is not limited by odds, opened them. We do know that we can walk away from the study even after the consult if we do not feel a peace about it, so we are not committed until we have all the information.
What are the risks? The biggest risk is of premature delivery caused by the in-utero surgery. Obviously, that is a big concern for us. It is our understanding that 150 of the 200 surgeries MOMS is trying to do have already been done. I believe 3 have resulted in the death of the baby.
What would we pursue this? We know from ultrasound that our baby is kicking her feet and moving them, however, we also know that damage to the nerves done by the amniotic fluid, her growth in-utero, as well as her delivery may cause more damage. It is possible that by the time she is born, she may not be moving them. The longer the nerves stay exposed outside her body, the more chance they have of being damaged. There are some initial positive results from the study, though nothing is conclusive at this point. Children with spina bifida need shunts to drain fluid from the brain about 80% of the time. There is promise that those who have surgery in-utero have shunts much less, or at least delay the need for shunting. Since shunts are one of the biggest causes of brain infection, complications, etc, that is reason for consideration. We are learning a lot about spina bifida and current treatments just by pursuing this, so that alone is helpful. If we are in the study our baby would be followed up with at several intervals as she grows.
We would appreciate your prayers as we pursue the study and that we would trust God's leading, wherever He leads. The thought of 12 weeks in another city, possibly without my children, is enough to make me not pursue it. But, I know that in the grand scheme of life 12 weeks is not too much to sacrifice for our precious baby if this would really be helpful for her. Only God knows, so we leave it in His hands.
So.. now that I am rested, I will try and tackle the MOMS study, Management of Myelomeningocele Study. Doctors are able to do surgery on babies with spina bifida before birth in order to fix the spinal lesion which is routinely fixed at birth. This surgery has been being done for over 10 years. However, currently it is only being done at 3 hospitals and you must be accepted into the study to have it done. We have done some research and continue pursuing being accepted into the study. We are in the process of faxing and mailing the MANY medical records that they need. The surgery must be done before 25 weeks, so this option is only available to us for about 4 more weeks.
Once the MOMS study receives our records they will decide whether we qualify or not. There are reasons we many not, but the biggest one is that both Elizabeth and Hannah were born at about 36 weeks. They do not usually accept you into the study with a history of pre-term labor. If they decide we qualify for the study, we will be sent to San Francisco, Nashville, or Philadelphia for 2-3 days of consults and testing with all the doctors involved in doing the surgery. They would try to send us to San Francisco, but there are no guarantees. During that time we would get to ask lots of questions and get all the information. At the end of the time, we would decide whether we want to participate in the study, and the doctors would also decide if we are still a candidate for the study.
If both sides decide to participate in the study, we would then be placed into the "randomization" process. 50% of participates receive the surgery in-utero, and 50% receive the standard of care surgery at birth. If we received the standard of care, we would be sent home and would return to San Francisco (or other location) and the baby would be delievered by c-section at 37 weeks and have surgery at that time. If we received the in-utero surgery, it would be scheduled within 1-2 days and I would need to stay there until the baby it born by c-section at 37 weeks. Obviously, that would be a real challenge for our family.
The study provides travel, meals and lodging for me and a support person who must be with me during the entire time. It does not, however, provide for our other children.
We continue to pursue this option as long as the Lord leaves the door open. If the door shuts, we will trust His hand. Are we positive the in-utero surgery is the right path? No, we know that it is a long-shot. But, if all the doors open,we will trust that our God, who is not limited by odds, opened them. We do know that we can walk away from the study even after the consult if we do not feel a peace about it, so we are not committed until we have all the information.
What are the risks? The biggest risk is of premature delivery caused by the in-utero surgery. Obviously, that is a big concern for us. It is our understanding that 150 of the 200 surgeries MOMS is trying to do have already been done. I believe 3 have resulted in the death of the baby.
What would we pursue this? We know from ultrasound that our baby is kicking her feet and moving them, however, we also know that damage to the nerves done by the amniotic fluid, her growth in-utero, as well as her delivery may cause more damage. It is possible that by the time she is born, she may not be moving them. The longer the nerves stay exposed outside her body, the more chance they have of being damaged. There are some initial positive results from the study, though nothing is conclusive at this point. Children with spina bifida need shunts to drain fluid from the brain about 80% of the time. There is promise that those who have surgery in-utero have shunts much less, or at least delay the need for shunting. Since shunts are one of the biggest causes of brain infection, complications, etc, that is reason for consideration. We are learning a lot about spina bifida and current treatments just by pursuing this, so that alone is helpful. If we are in the study our baby would be followed up with at several intervals as she grows.
We would appreciate your prayers as we pursue the study and that we would trust God's leading, wherever He leads. The thought of 12 weeks in another city, possibly without my children, is enough to make me not pursue it. But, I know that in the grand scheme of life 12 weeks is not too much to sacrifice for our precious baby if this would really be helpful for her. Only God knows, so we leave it in His hands.
Wednesday, May 20, 2009
A Little R & R
This year for my birthday I asked my hubby for a couple days away to meet my cousin. We have a hotel half-way between the two of us, and we're meeting tomorrow to rest, relax, talk, and scrapbook. I can't wait to see Kristie and I really need the rest. We couldn't find a time that worked for both of us back in April (which is my real birthday), but the timing is from God's hand. I know I will feel refreshed and encouraged when I return.
Kevin will be holding down the fort tomorrow and then the kids will be spending a couple nights with our dear friends in San Diego. I'll be home Saturday afternoon and be able to spend some time with my hubby and catching up on things at home before the kids return Sunday afternoon. Mostly, I'll probably catch up on sleep.
Kevin will have the chance to work uninterrupted, which has been hard to come by lately.
We are so thankful for the friends in our lives who encourage and bless us. I shed tears of joy today as one of my dear MOMS Club friends and her two kids (who are also my students) held a garage sale and raised money for our baby. They gave me a sweet card and the money at the end of school today. It is so amazing to know we don't walk this path alone, but have so many dear friends beside us who show up when we need it most and often when we least expect it.
Kevin will be holding down the fort tomorrow and then the kids will be spending a couple nights with our dear friends in San Diego. I'll be home Saturday afternoon and be able to spend some time with my hubby and catching up on things at home before the kids return Sunday afternoon. Mostly, I'll probably catch up on sleep.
Kevin will have the chance to work uninterrupted, which has been hard to come by lately.
We are so thankful for the friends in our lives who encourage and bless us. I shed tears of joy today as one of my dear MOMS Club friends and her two kids (who are also my students) held a garage sale and raised money for our baby. They gave me a sweet card and the money at the end of school today. It is so amazing to know we don't walk this path alone, but have so many dear friends beside us who show up when we need it most and often when we least expect it.
Tuesday, May 19, 2009
Healthy Heart!
The doctor informed us this morning that our baby appears to have a healthy heart. I can't tell you how wonderful that feels. One less thing to worry about. She said it is very difficult to detect small holes, etc, but that so far things looked good. She sees no need to repeat it later. We got there and were told it could take up to 3 hours! Baby decided not to cooperate as she was very active. I had noticed her moving a lot last night as well. The most I have ever noticed her moving. So, that made taking good pictures of her heart more challenging. Then they had to wait for the doctor to review the results and consult with us. We were glad to know today, though.
We picked up medical records at the Maternal/Fetal Medicine office and will FED EX those to MOMS Study today. We returned home about 11am and I fed everyone a quick lunch and then the girls and I headed to urgent care. (because I don't have enough doctor visits in my life :)
Hannah had been complaining of ear pain and her cold is worse today, so she just started antibiotics as the doctor said her ear is "on fire."
Just as I was ready to leave for the doctor, I took another look at Elizabeth's red face and realized it was not a sunburn from yesterday as it was creeping down her neck and chest. Sunburns don't move, thought I! So... I took her too and found she has something called "viral syndrome." Which sounds awful, but basically sounds like a cold to me. He said she was wheezing, so she was given a breathing treatment. I was glad I had taken her even though she said she was feeling fine.
We picked up antibiotic, dimetapp DM and the girls each chose a gatorade and came home. The kids are resting now and I'm off to take a nap. The doctor said to rest and drink fluids, so that is what we will do the rest of the day. He did say they were fine to go to school tomorrow, and I asked at least 3 times, so we'll plan on that for now.
Thanks for all the prayers.
We picked up medical records at the Maternal/Fetal Medicine office and will FED EX those to MOMS Study today. We returned home about 11am and I fed everyone a quick lunch and then the girls and I headed to urgent care. (because I don't have enough doctor visits in my life :)
Hannah had been complaining of ear pain and her cold is worse today, so she just started antibiotics as the doctor said her ear is "on fire."
Just as I was ready to leave for the doctor, I took another look at Elizabeth's red face and realized it was not a sunburn from yesterday as it was creeping down her neck and chest. Sunburns don't move, thought I! So... I took her too and found she has something called "viral syndrome." Which sounds awful, but basically sounds like a cold to me. He said she was wheezing, so she was given a breathing treatment. I was glad I had taken her even though she said she was feeling fine.
We picked up antibiotic, dimetapp DM and the girls each chose a gatorade and came home. The kids are resting now and I'm off to take a nap. The doctor said to rest and drink fluids, so that is what we will do the rest of the day. He did say they were fine to go to school tomorrow, and I asked at least 3 times, so we'll plan on that for now.
Thanks for all the prayers.
Monday, May 18, 2009
Tomorrow
Tomorrow at 8am we have an echocardiogram to check out our baby's heart. The intent is to discover whether spina bifida is the only birth defect, of if she has multiple issues to deal with. Nothing was noted from the ultrasound, but the echocardiogram should be more accurate. We are praying for a healthy heart tomorrow. We would appreciate your prayers as we find out, no matter what the outcome.
The song that is speaking to my heart today is, can you guess? Another hymn. :) I can't say I don't worry about tomorrw, but I am thankful I know Who holds it.
I Know Who Holds Tomorrow
words and music by Ira Stanphill
I don't know about tomorrow,
I just live from day to day.
I don't borrow from it's sunshine,
For it's skies may turn to gray.
I don't worry o'er the future,
For I know what Jesus said,
And today I'll walk beside Him,
For He knows what is ahead.
Refrain
Many things about tomorrow,
I don't seem to understand;
But I know Who holds tomorrow,
And I know Who holds my hand.
The song that is speaking to my heart today is, can you guess? Another hymn. :) I can't say I don't worry about tomorrw, but I am thankful I know Who holds it.
I Know Who Holds Tomorrow
words and music by Ira Stanphill
I don't know about tomorrow,
I just live from day to day.
I don't borrow from it's sunshine,
For it's skies may turn to gray.
I don't worry o'er the future,
For I know what Jesus said,
And today I'll walk beside Him,
For He knows what is ahead.
Refrain
Many things about tomorrow,
I don't seem to understand;
But I know Who holds tomorrow,
And I know Who holds my hand.
Sunday, May 17, 2009
Spina Bifida 101
There are classes you never want to take, but it is amazing how fast you can learn a subject when you need to. We have learned a lot about spina bifida in the last 10 days. Here is a little bit of what we know so you can better understand what we are talking about.
Spina bifida is a serious birth defect that occurs when tissue surrounding the developing spinal cord of a baby doesn’t close properly. It is part of a group of birth defects called neural tube defects where a portion of the neural tube (brain and spinal cord) fails to develop or close properly. In our baby’s case the opening is at an L3 level, which is 3 vertebrae above the tail bone.
There are three forms of spina bifida: Spina bifida occulta, Meningocele, and Myelomeningocele. The first two are more mild as the spinal cord and nerves are usually still intact. The form our baby has is the more common, Myelomeningocele, which is what most people are referring to when they say “spina bifida.” This is the one in which the spinal canal remains open along with several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed. The sac on our baby’s back is clearly visible via ultrasound. I noticed it before being told what it was by the doctor, but thought it was a large air bubble. Ultrasound is very effective today at detecting spina bifida and assessing its severity, so we are confident the doctors have made a correct diagnosis. The ultrasound we had was both 3D and 4-D.
There are many factors which affect the severity of complications of spina bifida. Some factors are:
The size and location of the neural tube defect
Whether skin covers the affected area
Whether spinal nerves come out of the affected area of the spinal cord
We do not know the answer to all these questions and may not until after our baby is born and some may not be answered until much later as our baby grows.
Complications of spina bifida widely range based on the factors above. However, the vast majority with a lesion like our baby’s include:
- Partial or complete paralysis of the legs – children with this form of spina bifida may need crutches, braces or wheelchairs.
- Lack of normal bowel and bladder control
- Hydrocephalus – fluid on the brain. – Most babies with myelomeningocele have this accumulation of fluid on the brain due to the Chiari brain malformation that usually accompanies spina bifida. Most will need shunts (a surgically placed tube) to drain this fluid into the abdomen. I read that babies with an L1 lesion or above all required shunts, and those with and L4 or below rarely did.
- Meningitis – infection in the tissues surrounding the brain may cause brain injury and can be life-threatening.
The current standard of care is to deliver the baby via c-section. This minimizes additional damage to the nerves during birth. The baby will have surgery in the hours or days after her birth. A neurosurgeon places the spinal cord and exposed tissue inside the body and covers them with muscle and skin. This surgery is performed quickly to minimize the risk of infection of exposed nerves, and to protect the spinal cord from trauma. A shunt for hydrocephalus is usually needed within the first week of life as well.
The lack of nerve development, or damage to the nerves is irreparable, so on-going care is necessary. Loma Linda University Medical Center, where we are being seen, has a spina bifida clinic. Their surgeons, physicians, therapists will be involved with planning our baby’s care after birth.
These are the likely scenarios our baby will face, though we know there are more mild and more severe outcomes. We will love our baby whether she has more mild or more severe complications. We are just preparing for what the likely outcomes will be. We are also looking into the current clinical trials being conducted called the Management of Myelomeningocele Study (MOMS). They are studying the benefits of doing the repair surgery before birth. I’ll try to blog more about that another day.
Spina bifida is a serious birth defect that occurs when tissue surrounding the developing spinal cord of a baby doesn’t close properly. It is part of a group of birth defects called neural tube defects where a portion of the neural tube (brain and spinal cord) fails to develop or close properly. In our baby’s case the opening is at an L3 level, which is 3 vertebrae above the tail bone.
There are three forms of spina bifida: Spina bifida occulta, Meningocele, and Myelomeningocele. The first two are more mild as the spinal cord and nerves are usually still intact. The form our baby has is the more common, Myelomeningocele, which is what most people are referring to when they say “spina bifida.” This is the one in which the spinal canal remains open along with several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed. The sac on our baby’s back is clearly visible via ultrasound. I noticed it before being told what it was by the doctor, but thought it was a large air bubble. Ultrasound is very effective today at detecting spina bifida and assessing its severity, so we are confident the doctors have made a correct diagnosis. The ultrasound we had was both 3D and 4-D.
There are many factors which affect the severity of complications of spina bifida. Some factors are:
The size and location of the neural tube defect
Whether skin covers the affected area
Whether spinal nerves come out of the affected area of the spinal cord
We do not know the answer to all these questions and may not until after our baby is born and some may not be answered until much later as our baby grows.
Complications of spina bifida widely range based on the factors above. However, the vast majority with a lesion like our baby’s include:
- Partial or complete paralysis of the legs – children with this form of spina bifida may need crutches, braces or wheelchairs.
- Lack of normal bowel and bladder control
- Hydrocephalus – fluid on the brain. – Most babies with myelomeningocele have this accumulation of fluid on the brain due to the Chiari brain malformation that usually accompanies spina bifida. Most will need shunts (a surgically placed tube) to drain this fluid into the abdomen. I read that babies with an L1 lesion or above all required shunts, and those with and L4 or below rarely did.
- Meningitis – infection in the tissues surrounding the brain may cause brain injury and can be life-threatening.
The current standard of care is to deliver the baby via c-section. This minimizes additional damage to the nerves during birth. The baby will have surgery in the hours or days after her birth. A neurosurgeon places the spinal cord and exposed tissue inside the body and covers them with muscle and skin. This surgery is performed quickly to minimize the risk of infection of exposed nerves, and to protect the spinal cord from trauma. A shunt for hydrocephalus is usually needed within the first week of life as well.
The lack of nerve development, or damage to the nerves is irreparable, so on-going care is necessary. Loma Linda University Medical Center, where we are being seen, has a spina bifida clinic. Their surgeons, physicians, therapists will be involved with planning our baby’s care after birth.
These are the likely scenarios our baby will face, though we know there are more mild and more severe outcomes. We will love our baby whether she has more mild or more severe complications. We are just preparing for what the likely outcomes will be. We are also looking into the current clinical trials being conducted called the Management of Myelomeningocele Study (MOMS). They are studying the benefits of doing the repair surgery before birth. I’ll try to blog more about that another day.
Saturday, May 16, 2009
Spotlight on Broadway
Tonight was David's performance with his school called "Spotlight on Broadway." They performed various songs and told the history of Broadway. David was a narrator and also performed in all the group numbers. He did a great job and we are proud of him. He takes his roles very seriously, so he rarely cracks a smile as he concentrates on his lines and dance moves. The other kids each picked a balloon out for him to give him after the performance. Tiger striped balloon from Elizabeth, blue from Joel (his favorite color) and a red congratulations balloon from Hannah. I'm hoping to figure out how to post pictures here soon.
We spent the morning working on David's science project, housework, and cleaning Elizabeth's hamster's cage. It feels good to have time for the routine things on life and catch up a bit. David is testing the aerodynamics of his lego star wars vehicles in a home-made wind tunnel. We had really fallen behind on this over the past week. Not having a stinky hamster cage is always nice, too.
It is nice to have a day to focus on our children and not so much medical stuff. I get teary when I watch all the kids run onto stage in the performance and realize that life for our youngest daughter will quite likely not include running onto the stage. Watching what our kids and other kids do these days often brings tears to my eyes as I ponder what life holds for our daughter.
We spent the morning working on David's science project, housework, and cleaning Elizabeth's hamster's cage. It feels good to have time for the routine things on life and catch up a bit. David is testing the aerodynamics of his lego star wars vehicles in a home-made wind tunnel. We had really fallen behind on this over the past week. Not having a stinky hamster cage is always nice, too.
It is nice to have a day to focus on our children and not so much medical stuff. I get teary when I watch all the kids run onto stage in the performance and realize that life for our youngest daughter will quite likely not include running onto the stage. Watching what our kids and other kids do these days often brings tears to my eyes as I ponder what life holds for our daughter.
Friday, May 15, 2009
Count Your Blessings
I love the hymns of faith. Call me sentimental, but they speak to my heart so often. This one has been ringing in my ears this week. So... I'm taking a pause from the way too many details of life and counting the blessings of the past week.
1. My wonderful husband who calls often to see if I need him to come home and has the flexibility in his work to do so.
2. Swine flu - because of it, children are currently banned from the hospital, so they were not with us when we received the difficult news "spina bifida."
3. Rebecca who stayed with our kids that day, which ended up being a LOT longer than any of us expected AND she mopped and vacuumed all our floors not knowing our whole world was being shaken. I've been so thankful this week that at least my floors are clean.
4. Carla (who lives with us) who watched our kids so Kevin and I could take a walk and procss that first day AND who has also volunteered to clean our bathrooms!
5. Trina who came and stayed with all our kids during amnio and helped with their school work.
6. Lisa who came and stayed with us after amnio and helped with dinner, dishes and bedtime.
7. Jesse and Melinda who took our kids out for Coldstone so I could rest after the amnio AND filled the van up with gas. I cried tears of joy at having gas in the van the next time I had to go somewhere.
8. Our kids who are so excited about their new baby sister and don't really care what special needs she will have. They are looking forward to the likelihood she'll be in a wheelchair and get them to the front of the amusement park lines! Elizabeth has already rearranged the girls room so they can fit her crib.
9. The MANY friends and family who have encouraged us with their prayers, words, email, phone calls and love. We wouldn't know what to do without you.
10. For the Lord who helps us to "keep on singing."
Count Your Blessings
Ephesians 1:3
Words by Johnson Oatman, Jr., 1856-1922
Music by Edwin O. Excell, 1851-1921
When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.
Refrain
Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.
Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.
1. My wonderful husband who calls often to see if I need him to come home and has the flexibility in his work to do so.
2. Swine flu - because of it, children are currently banned from the hospital, so they were not with us when we received the difficult news "spina bifida."
3. Rebecca who stayed with our kids that day, which ended up being a LOT longer than any of us expected AND she mopped and vacuumed all our floors not knowing our whole world was being shaken. I've been so thankful this week that at least my floors are clean.
4. Carla (who lives with us) who watched our kids so Kevin and I could take a walk and procss that first day AND who has also volunteered to clean our bathrooms!
5. Trina who came and stayed with all our kids during amnio and helped with their school work.
6. Lisa who came and stayed with us after amnio and helped with dinner, dishes and bedtime.
7. Jesse and Melinda who took our kids out for Coldstone so I could rest after the amnio AND filled the van up with gas. I cried tears of joy at having gas in the van the next time I had to go somewhere.
8. Our kids who are so excited about their new baby sister and don't really care what special needs she will have. They are looking forward to the likelihood she'll be in a wheelchair and get them to the front of the amusement park lines! Elizabeth has already rearranged the girls room so they can fit her crib.
9. The MANY friends and family who have encouraged us with their prayers, words, email, phone calls and love. We wouldn't know what to do without you.
10. For the Lord who helps us to "keep on singing."
Count Your Blessings
Ephesians 1:3
Words by Johnson Oatman, Jr., 1856-1922
Music by Edwin O. Excell, 1851-1921
When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.
Refrain
Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.
Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.
Thursday, May 14, 2009
One Week
One week ago today we had our routine 20-week ultrasound and heard the news "spina bifida" that would change our lives forever. Kevin said he will never look at an ultrasound room the same again. It is almost surreal as our minds try to comprehend reality and prepare for our special daughter. Our lives will never be the same, but we know they have already been blessed, touched and changed by the life of this baby. We know that will continue for as long as the Lord allows us to have her in our lives.
As the ultrasound began the technition asked if we wanted to know gender. I told her "yes," and that I thought we were having a boy. Within a minute or two, she told us, I'm not seeing a boy! Though the baby was not very cooperative, either, so she said she would return to that later and see if she could get a better picture. She continued the ultrasound and refered to the baby as "baby." Later, during the ultrasound I noticed she switched and began to refer to our baby as "she." This was before she checked gender again. I found this interesting at the time, and now realize she had probably figured out the spina bifida by then and knowing it occurs most in girls, that probably confirmed to her we are having a girl. She did return later for more confirmation pictures.
During the ultrasound I noticed she spent a lot of time on the spine, but they spend significant time there anyway, so I wasn't too worried. I did notice what I thought was an air bubble near our baby's back and almost asked her about it. The doctor said later the technition was very glad I didn't as they cannot reveal results like that to us. She also asked if we had an elevated AFP score. For some reason that test was not run. We had talked about it, but never got it done at my last appointment. I suspect now that she saw the spina bifida and wanted to know if we had elevated AFP scores. Elevated AFP scores can signify a number of things including spina bifida, which is why they then do a follow-up ultrasound. We have been asked by several at the doctors office if that is why we were having the ultrasound.
I had already asked the technition what the proceedure was if she saw something concerning. She informed us that the doctor always comes in and checks her findings before the patient leaves. She finished the ultrasound, but before she left the room she imputed some information into the computer. There is a screen visible to the patient as well. I noticed a screen listing all the major body parts/organs. The clicked a button that put normal in all the fields, and then moved the cursor to the spine field and clicked. I never saw the word abnormal as it sent her to another screen, she took the information and went for the doctor. After she left, I asked Kevin,"did you just see what she did?" He said you're really watching her, aren't you?
The doctor returned just minutes later and I will always be grateful for her candor. She immediately informed us that the technician had detected spina bifida on the ultrasound. She said she would check that, but that she suspected she was correct as they are very easy to identify with ultrasound. She then went immediately to what I had thought was the "air bubble" and informed us that is where our daugther's spinal cord is protruding from the opening in her back.
At the time, I only had a very basic knowledge of spina bifida and Kevin had only heard the word. The rest of the appointment is a bit of a blur. We tried to ask the questions we knew to ask, but really didn't know what to ask. Since Loma Linda is a Seventh Day Adventist Hospital, we were very thankful she did not push "interupting the pregnancy," though she did tell us that she had to mention that to us as an option. We let her know that is not an option for us, and that is the last we have heard of it from anyone. That is a huge blessing as I have heard some pretty terrible stories of how the medical community tries to persuade you to "terminate."
The ultrasound was both a 3-D and 4D which I believe, are the highest level ultrasounds today. They were performed in high risk/advanced fetal medicine office at Loma Linda University Hospital which also has a spina bifida clinic. There have been those who say, maybe the doctors are wrong, maybe it is the mild form of spina bifida which is completely enclosed, but we know what we and they saw. We know that we have had some of the most highly trained doctors confirm the diagnosis.
We also know that we serve a God who can do miracles. Can he put our daughters spinal cord/meninges back where they belong? We firmly believe He can. However, we also know that He has set up the physical laws of this world and He usually operates within those. We know that He does not have to heal our daugther to be glorified and to still be God. We will choose to trust Him regardless of whether He chooses to heal or not. We know that either way we will love our daughter and God will be with each one of us through this process. Is it an easy process? I must admit it is not.
These memories are seared into my mind for now, but I know they may not always be. I wanted to record them for the future and to answer many questions from our dear friends and family whom I don't have time to answer personally.
As the ultrasound began the technition asked if we wanted to know gender. I told her "yes," and that I thought we were having a boy. Within a minute or two, she told us, I'm not seeing a boy! Though the baby was not very cooperative, either, so she said she would return to that later and see if she could get a better picture. She continued the ultrasound and refered to the baby as "baby." Later, during the ultrasound I noticed she switched and began to refer to our baby as "she." This was before she checked gender again. I found this interesting at the time, and now realize she had probably figured out the spina bifida by then and knowing it occurs most in girls, that probably confirmed to her we are having a girl. She did return later for more confirmation pictures.
During the ultrasound I noticed she spent a lot of time on the spine, but they spend significant time there anyway, so I wasn't too worried. I did notice what I thought was an air bubble near our baby's back and almost asked her about it. The doctor said later the technition was very glad I didn't as they cannot reveal results like that to us. She also asked if we had an elevated AFP score. For some reason that test was not run. We had talked about it, but never got it done at my last appointment. I suspect now that she saw the spina bifida and wanted to know if we had elevated AFP scores. Elevated AFP scores can signify a number of things including spina bifida, which is why they then do a follow-up ultrasound. We have been asked by several at the doctors office if that is why we were having the ultrasound.
I had already asked the technition what the proceedure was if she saw something concerning. She informed us that the doctor always comes in and checks her findings before the patient leaves. She finished the ultrasound, but before she left the room she imputed some information into the computer. There is a screen visible to the patient as well. I noticed a screen listing all the major body parts/organs. The clicked a button that put normal in all the fields, and then moved the cursor to the spine field and clicked. I never saw the word abnormal as it sent her to another screen, she took the information and went for the doctor. After she left, I asked Kevin,"did you just see what she did?" He said you're really watching her, aren't you?
The doctor returned just minutes later and I will always be grateful for her candor. She immediately informed us that the technician had detected spina bifida on the ultrasound. She said she would check that, but that she suspected she was correct as they are very easy to identify with ultrasound. She then went immediately to what I had thought was the "air bubble" and informed us that is where our daugther's spinal cord is protruding from the opening in her back.
At the time, I only had a very basic knowledge of spina bifida and Kevin had only heard the word. The rest of the appointment is a bit of a blur. We tried to ask the questions we knew to ask, but really didn't know what to ask. Since Loma Linda is a Seventh Day Adventist Hospital, we were very thankful she did not push "interupting the pregnancy," though she did tell us that she had to mention that to us as an option. We let her know that is not an option for us, and that is the last we have heard of it from anyone. That is a huge blessing as I have heard some pretty terrible stories of how the medical community tries to persuade you to "terminate."
The ultrasound was both a 3-D and 4D which I believe, are the highest level ultrasounds today. They were performed in high risk/advanced fetal medicine office at Loma Linda University Hospital which also has a spina bifida clinic. There have been those who say, maybe the doctors are wrong, maybe it is the mild form of spina bifida which is completely enclosed, but we know what we and they saw. We know that we have had some of the most highly trained doctors confirm the diagnosis.
We also know that we serve a God who can do miracles. Can he put our daughters spinal cord/meninges back where they belong? We firmly believe He can. However, we also know that He has set up the physical laws of this world and He usually operates within those. We know that He does not have to heal our daugther to be glorified and to still be God. We will choose to trust Him regardless of whether He chooses to heal or not. We know that either way we will love our daughter and God will be with each one of us through this process. Is it an easy process? I must admit it is not.
These memories are seared into my mind for now, but I know they may not always be. I wanted to record them for the future and to answer many questions from our dear friends and family whom I don't have time to answer personally.
Tuesday, May 12, 2009
Amniocent what's it?
I'm learning to spell a lot of words I never knew before. I am home from my amniocentesis and all went well. It was fast and pretty much painless. Today I am supposed to take it easy. Elizabeth is holding me to my promise to sit on the couch and read books. We were also able to meet with a couple high-risk doctors and schedule follow-up appointments.
This morning the Lord reminded me that this whole journey is going to be one of trusting my daughter into His hands. There will be many surgeries throughout her life with potential negative outcomes. Will I trust Him with her life? Thanks for all your prayers. I felt a lot of peace this morning and throughout the whole procedure.
This morning the Lord reminded me that this whole journey is going to be one of trusting my daughter into His hands. There will be many surgeries throughout her life with potential negative outcomes. Will I trust Him with her life? Thanks for all your prayers. I felt a lot of peace this morning and throughout the whole procedure.
Monday, May 11, 2009
Mind Boggling
Many of you have no doubt seen the picture of baby Samuel Armas's hand reaching from the womb and grasping his surgeon's hand. When I first saw this picture the thought of in utero surgery was mind boggling. It still is! This was one of the first in utero spina bifida surgeries and it occured about 10 years ago, when our oldest son, David, was born.
Today, we are considering such a surgery for our baby. I'll try and post more information on that tomorrow. However, in order to even consider that route we must have amniocentesis done. We are scheduled for that at 10:45am tomorrow. I must say this proceedure strikes terror into my heart. There is a less the one percent chance of miscarriage due to the proceedure. If it knew I had over a 99% chance of winning in Vegas, gambling wouldn't be gambling, right? So.. if I think of Vegas odds, I feel better. :) I have always said that the only way I would have amnio is if there was a potential benefit to our baby. We believe that there is, so this is the next step.
Please pray for peace for me and safety for our baby during this proceedure tomorrow.
Today, we are considering such a surgery for our baby. I'll try and post more information on that tomorrow. However, in order to even consider that route we must have amniocentesis done. We are scheduled for that at 10:45am tomorrow. I must say this proceedure strikes terror into my heart. There is a less the one percent chance of miscarriage due to the proceedure. If it knew I had over a 99% chance of winning in Vegas, gambling wouldn't be gambling, right? So.. if I think of Vegas odds, I feel better. :) I have always said that the only way I would have amnio is if there was a potential benefit to our baby. We believe that there is, so this is the next step.
Please pray for peace for me and safety for our baby during this proceedure tomorrow.
Sunday, May 10, 2009
Be Still and Hope
Be Still and Know that I am God. Psalm 46:10
I admit, I don't do still very well. God has been bringing this verse to mind as I wade through the volumes of information and decisions we now face. I can only do so much, and then I just need to be still and rest in the knowledge that He is God. He knows our daughter and the exact nature of her needs. He will see us through. So.. I am working on still.
Today has been a day of HOPE for me. Yesterday was a day to crash and burn and cry. Today was a day to hope. People with spina bifida do amazing things in life and there is so much help for them medically and otherwise. I read several stories of children and adults who have spina bifida and it gives me hope. Hope for the life our daughter can lead. We really don't know what God has planned for her, but there is so much reason to hope. I'm thankful for that tonight.
We are so grateful for the outpouring of love and support from so many friends and family. It is overwhelming to realize how many love us, are there for us and are just waiting to help. Thank you to each one of you who has taken the time to encourage us or pray for us these past four days. You know who you are. Bless You!!
I admit, I don't do still very well. God has been bringing this verse to mind as I wade through the volumes of information and decisions we now face. I can only do so much, and then I just need to be still and rest in the knowledge that He is God. He knows our daughter and the exact nature of her needs. He will see us through. So.. I am working on still.
Today has been a day of HOPE for me. Yesterday was a day to crash and burn and cry. Today was a day to hope. People with spina bifida do amazing things in life and there is so much help for them medically and otherwise. I read several stories of children and adults who have spina bifida and it gives me hope. Hope for the life our daughter can lead. We really don't know what God has planned for her, but there is so much reason to hope. I'm thankful for that tonight.
We are so grateful for the outpouring of love and support from so many friends and family. It is overwhelming to realize how many love us, are there for us and are just waiting to help. Thank you to each one of you who has taken the time to encourage us or pray for us these past four days. You know who you are. Bless You!!
Our Baby Girl
5/7/09
Today we received the exciting news that we are having a GIRL! We also found out that our baby girl has spina bifida. We covet your prayers as we navigate the unknown path before us. Our minds are whirling with all the information and things to be done. The next few weeks will be a blur of doctor appointments and research.
The Lord has been preparing me for this special baby. I was not completely surprised today as I feel the Lord has been speaking to my heart about the uniqueness of our new baby. One month ago today I wrote these words in my journal:
4/7/09
“I feel God has a special purpose for your life. Of course, He does for all of us, but I feel there is something different about you, even now. It is kind of scary. Will it be a high and noble purpose of human significance? Or will it be a humble, unseen by the world significance of spiritual value? I just feel we are “missing” something with you. The fact that God gave you to us when we thought we were done, prayed to be done, shows me God had some reason to say “no” to those prayers. Little one, may you grow to fill the exact purpose God made you for. May we celebrate that purpose no matter what it is.”
At this point we have really just begun to research and understand what spina bifida means. We have been told of a clinical trial currently being conducted in which they operate on the baby before birth. We are looking into that, but it must be done in the next 5 weeks. Otherwise, we know the baby will be born via c-section at about 37 weeks and have surgery immediately to enclose the spinal cord. We understand there is a spina bifida clinic here in Loma Linda which is where we are currently being seen. We also know that the current and future nerve damage is irreversible.
We know that God has given our daughter to us and we know He will see us through and use her life for His glory.
Today we received the exciting news that we are having a GIRL! We also found out that our baby girl has spina bifida. We covet your prayers as we navigate the unknown path before us. Our minds are whirling with all the information and things to be done. The next few weeks will be a blur of doctor appointments and research.
The Lord has been preparing me for this special baby. I was not completely surprised today as I feel the Lord has been speaking to my heart about the uniqueness of our new baby. One month ago today I wrote these words in my journal:
4/7/09
“I feel God has a special purpose for your life. Of course, He does for all of us, but I feel there is something different about you, even now. It is kind of scary. Will it be a high and noble purpose of human significance? Or will it be a humble, unseen by the world significance of spiritual value? I just feel we are “missing” something with you. The fact that God gave you to us when we thought we were done, prayed to be done, shows me God had some reason to say “no” to those prayers. Little one, may you grow to fill the exact purpose God made you for. May we celebrate that purpose no matter what it is.”
At this point we have really just begun to research and understand what spina bifida means. We have been told of a clinical trial currently being conducted in which they operate on the baby before birth. We are looking into that, but it must be done in the next 5 weeks. Otherwise, we know the baby will be born via c-section at about 37 weeks and have surgery immediately to enclose the spinal cord. We understand there is a spina bifida clinic here in Loma Linda which is where we are currently being seen. We also know that the current and future nerve damage is irreversible.
We know that God has given our daughter to us and we know He will see us through and use her life for His glory.
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