I'm going to backtrack a story into this blog post, because something really cool happened a couple weeks ago, and something really cool and similar happened today. Vincent had his first dental appointment. I was fussed at by the dentist for giving him too much Juicy Juice. My son is very demanding with his juice and refuses to drink water. It's quite a battle. We've started putting MiO into his water and it's helping a little bit. He still doesn't have any cavities, but most likely will if he keeps up his *cringes* almost 30 oz. of daily juice habit. Well presently, since the dental appointment, he gets usually only one cup, possibly two now a day. With Marlena's early intervention came the optional support group "Family Connections." Being the social butterfly that I am, I accepted and I'm so glad that I did. They partner you with another parent, who usually has a child with the same condition, and you connect via phone/e-mail. My family partner is such a strong woman and I'm so glad I've been able to talk with her and hear her story. Talking to her really helps to reassure me that no matter what happens, it will all be alright in the end. As I was talking to the dental assistant, I casually asked when Marlena should be seen for her first appointment. I mentioned that she had hydrocephalus. Guess what? My family partner heard me say "the word" and recognized us. It turns out she is a dental assistant there! It was so great to meet her.What a small world.
Today was really rainy. I took Marlena to see the neuro's office today to discuss with the nurse practitioner her take on the last CT scan. She wasn't able to compare this scan to her MRI, which was done back in December, because she explained that she doesn't have the capability to do so. Only her neurosurgeon can do that. I will have to wait eight long weeks before I know just what exactly is going on in that pretty little head of my daughter.
What's clear, is that her left ventricle is still pretty enlarged. The nurse practitioner thinks there is a possibility that it may not be communicating properly, or well enough, with the shunt. There could possibly be a membrane blocking it.Our discussion about the possibility of surgery was short, but scary. When Marlena first received her programmable shunt, the setting was at 100. After monitoring her head circumference and observing no plateau, it was decided that it be turned down to 90. Today, it was decided that from a clinical standpoint, that the shunt pressure should be lowered to 80. So now, we're flowing faster than ever before. We did the routine x-ray to make sure the setting was good. I hope changing the pressure gives that left ventricle the jump start that it needs to start cooperating. Some options that were discussed today were that a catheter be inserted into the left ventricle. It's basically like another "straw" that would be hooked up to her shunt. The other option she mentioned was poking holes in the ventricle. (I'm assuming this is something like an ETV.)
On the CT report, I noticed a word that I hadn't been informed of and didn't understand. "Encephalomalacia." This is the softening of the cerebral cortex, and was basically described to me as "brain damage." The way this was worded into the report was "Probable encephalomalacia left super lobe." The nurse practitioner is always very hopeful and told me that it may not stay this way. It's all confusing to me.
I am usually pretty observant where ever I go. When I'm sitting in a waiting room, I look around and check everyone out. I just like to know who's around me. I had to wait almost 40 minutes before Marley and I were called back. Our appointment lasted most likely around 30 minutes. When I came back out, a couple with a baby who was already waiting when I checked in, were still there!! Waiting. On my way out, I asked, "You still haven't been called back!?" "Nope," they replied, and then it hit me. I recognized this beautiful family!! It was so nice to meet them and their beautiful miracle. It was brief, but sweet, as they were called back right after the revelation that I recognized them from Facebook. It's funny that we later found out that our next appointment is also on the same day, which is so strange, considering they have different neurosurgeons. And again, what a small world.
We have a neurology appointment for the end of the month. I'm kind of scared, considering nothing else has happened. I don't want to learn something that I don't want to know yet, if that makes any sense.
My mother just had shoulder surgery done on Tuesday and she's really sick from the medicine/general anesthesia. I was good to her and brought ginger ale, jello, and picked up her phenergan for the nausea. I hope you feel better soon, Mom. I love you.
Wednesday, March 30, 2011
Tuesday, March 22, 2011
Portrait Day
I think they turned out great! This is one of my favorites! She is such a strong baby, she really inspires me!
A small update on how things have been around here: At her last neurosurgery follow up, her neurosurgeon proved to be, again, the rudest man known to his practice. Apparently, without giving him any inkling of insinuation that I didn't already know she had a condition, he told me I needed to be realistic about her development. She is who she is. I don't need his opinion about her development. His job is to make sure her surgery is still doing well. I'm pretty sure he gets the picture now, that I don't care for or want his opinion concerning that topic.
Wednesday, March 9, 2011
Second Infusion
Joshua and I left early on March 8th to drive up to Duke University Hospital for Marley's second cord blood infusion. To give a little bit more of an explanation, I am going to refer to what Amy said, because she put it so perfectly well:
"Stem cells are "undifferentiated," meaning they can become any cell in the body. The blood from a baby's umbelical cord contains millions, or sometimes even billions, of stem cells. During pregnancy, babies continuously receive stem cells as they grow. Once a baby is born and the umbelical cord is cut, they stop receiving them and the stem cells die off if they are not preserved. Dr. Kurtzberg has found that by giving babies back their cord blood at various points in time, the stem cells can help "repair" damaged brain cells in babies with hydrocephalus. Dr. Kurtzberg is currently the only doctor in the world offering this treatment, so we feel very fortunate that she is so close by."
Our appointment was actually at 1:15 PM, but we arrived at Duke at around 11 AM, but I had a message from the clinic telling me to come on up if we were early. It's a good thing we did that! We checked into our hotel at around 8 PM after 13 IV sticks on poor Marley. She was obviously not an easy stick. It was very frustrating for everyone, but she got her cells and that's what matters!!! The Duke team are all so awesome and they did their very best job to make the sticking minimal as possible, but Marley's veins just weren't behaving.
We had planned to meet up with other moms who have kids with hydro, but two of the kids became sick and had to cancel their appointments. Get well soon, sweet Elisabeth and Blake!!! I am so sad that we weren't able to meet up with Clair Bear, but we will see each other again soon sweetheart!! We did, however, get to meet up with The AMAZING Owen Higgins and his wonderful mommy, Michele. Owen is such a cutie! He has the cutest facial expressions. He was doing some serious texting when we met, but he was able to take a break for some adorable pics with my sweet Marley. I can't wait for Michele to post them, I just know they turned out awesome. So, everything doesn't turn out how we always plan it. We didn't all get to meet up and have a beautiful reunion with our kids who all have something so special in common. We've learned that well through our respective pregnancies. To which I leave you with this:
P.S. Marley's breath still smells like creamed corn. :)
Wednesday, March 2, 2011
Physical Therapy 101
We had our first physical therapy appointment today. I think it went really well. The physical therapist found more things that Marley needed to work on than I thought she would! She sees things that I never would have thought could be an issue, but I guess that's why she's the physical therapist! I really like our therapist. Her name is Miss Karen and she has been doing her job for 22 years. That makes me feel really, really good. She has a 16 year old son herself and she's the only person who will ever see Marley, unless there's an emergency for her, of course. I think that's just great! It's a great environment that sees only kids. I already spoke with a few parents in the waiting room and it was soooo nice to speak to a parent that didn't have our exact same diagnosis, but just "gets it." Our list of homework is a little overwhelming, in trying to remember exact positioning of how I should be doing her stretches and other exercises:
Home Activities
1. On her stomach, place small blanket roll under her nipple line.
- Stretch the front of hips
- Work on lifting head
- Put weight through elbows
- Think about putting weight through buttocks and legs
2. On her side, stretch the back and side of the neck. Also stretch the side of the trunk.
3. Lying on your lap with her head in the middle.
- Tracking eyes
- Focusing on your face
- Work on turning head to the left and turning eyes to the right.
So this is a lot to work on! I think I will know how to be a physical therapist by the time she's three years old!
Home Activities
1. On her stomach, place small blanket roll under her nipple line.
- Stretch the front of hips
- Work on lifting head
- Put weight through elbows
- Think about putting weight through buttocks and legs
2. On her side, stretch the back and side of the neck. Also stretch the side of the trunk.
3. Lying on your lap with her head in the middle.
- Tracking eyes
- Focusing on your face
- Work on turning head to the left and turning eyes to the right.
So this is a lot to work on! I think I will know how to be a physical therapist by the time she's three years old!
Friday, February 25, 2011
Easter Cuties
The look of adoration he has when I let him hold his little sister (no matter how angry she might be in the picture :) ! just melts my heart. He has such unconditional love for her and I am so thankful for that.
Wednesday, February 23, 2011
Where My Mind Was Then
I went back and found all of my posts on the i-am-pregnant.com website. It's interesting to read how I was feeling as we went through everything.
August 24, 2010 (This was four days after diagnosis.)
My husband and I are 21 weeks pregnant with our second child. We were ecstatic to learn that we were having a girl four days ago. About 20 minutes after leaving the ultrasound room, we were pulled aside and told by a doctor that there were some concerns about the baby and that we needed to go have a level 2 ultrasound done. There the doctor said that she was 90% sure our daughter has what she wrote down as 'massive ventriculomegaly.' I could see something flapping on the monitor, and she told me it was the choroid plexus hanging down into the fluid filled around. She told me that I had an option to terminate the pregnancy. I declined. I believe it is only God's decision to take her out of this world. I agreed to an amniocentesis after speaking with a genetic counselor. She mentioned absolutely nothing about the measurements of ventricles, nor did I ever hear the word 'hydrocephalus' come out of her mouth. After doing some research, I called her back that night and wanted to know very badly the measurements of the ventricles. She told me the left was 23mm and she said the right was somewhere around the same. I have a regular OB appointment on Sept. 3. On Sept. 7 I am being told to have an in depth ultrasound of her heart done, to make sure everything is fine there. They said she looked fine everywhere else, but often when there's a problem with the brain, there is also a problem with the heart. So they want this done to make sure everything looks normal. On Sept. 21 I am having an ultrasound with a specialist. My husband and I, and most of my family, are completely devastated by this news. My questions right now are,.. is her case comparable to these babies who turn out to be happy children? What is her chance of survival? I am feeling so lost, in such despair.
September 7, 2010
I had a fetal echo done yesterday so it is looking like this is isolated so far because everything with her heart looks great! She still kicking a lot and growing fast. I still have no clue how her VM is progressing. This is what I want to know the most. But they are waiting an entire month to look at her brain again from the day of diagnosis!! Shouldn't they be monitoring this much closer than a month later to watch what it's doing? A quick reminder to those who didn't catch my first post; my daughter was diagnosed with massive vm at 20 weeks u/s with 23mm vents. Amnio results returned normal chromosome structure and no infection.
September 21, 2010
I had the first ultrasound since diagnosis today. My baby girl's left vent measured in at 24 mm which is about the same it was a month ago, but the right vent has grown to 36 mm, whereas it was symmetrical. The doctor told me today that there's still a chance that she has holoprosencephaly, which a fetal MRI can hopefully determine if she has or not. The doctor told me today that it isn't the size of the ventricles that determines the neurological outcome of the baby, but the underlying cause. If she does have holoprosencephaly, then the outcome is very grim. If she does not have it, and the problem is caused by a blockage of the aqueduct, then there is a lot more hope. I am 25 weeks along now, and her head circumference is as if I were 30 weeks. I've been keeping the best positive mental attitude possible, but today is putting a strain on my state of mind. She still kicks me lots, which lets me know she is going to be a little fighter. We are two strong girls, we just have to hang in there.
October 7, 2010
We had our fetal MRI today. The radiologist and his colleagues all agree on two things. One being that she does not have holoprosencephaly. The second being that her ventriculomegaly is caused by aqueductal stenosis. The neonatologist I spoke with appeared to be very hopeful. This is the best news we could have received today. :)
November 10, 2010
Alright, I am 32 weeks pregnant now. To give a quick update, my baby girl was diagnosed with ventriculomegaly at our 20 wk u/s. I had another u/s today and her measurements are now really, really big and scary. Her left vent is 28 mm and the right one is now 63 mm. Her head circumference is 39 cm. and she is head down. The u/s technician said she weighs around 6 lbs. The plan is to do a c-section at 37 weeks, but with these new measurements I got today...... I want her out now. </span><span>They didn't tell me what her head circumference meant today, but I looked it up with I got home. A normal, term newborn baby's head circumference is between 33 cm. and 38 cm. So she is 32 weeks old in gestational age right now, and her head is technically that of a full term baby. I feel that the longer her hydrocephalus goes untreated, the higher the chance for her to have irreversible brain damage. I spoke with one of my genetic counselors today and she is discussing the u/s results with our MFM doctor to determine if a c-section would be best sooner than later.
December 11, 2010
Marlena Nichole Musgrave was born at 5:18 PM on December 7th. She weighed 7 lbs 13 oz and was 19 1/2 inches long with a head circumference of 42 cm. She received a VP programmable shunt about an hour shy of her being a day old. She is currently doing well. She is on room air, cries when she's not happy, has great eye movement control. We are currently working on getting her feedings going well. She is taking a bottle, but still is getting the hang of it. She is perfect to me. Her little misshapen head has a couple spots of bone protruding it seems like those weren't there before surgery and her head is a bit mushy in the back now which is a good sign I think.
August 24, 2010 (This was four days after diagnosis.)
My husband and I are 21 weeks pregnant with our second child. We were ecstatic to learn that we were having a girl four days ago. About 20 minutes after leaving the ultrasound room, we were pulled aside and told by a doctor that there were some concerns about the baby and that we needed to go have a level 2 ultrasound done. There the doctor said that she was 90% sure our daughter has what she wrote down as 'massive ventriculomegaly.' I could see something flapping on the monitor, and she told me it was the choroid plexus hanging down into the fluid filled around. She told me that I had an option to terminate the pregnancy. I declined. I believe it is only God's decision to take her out of this world. I agreed to an amniocentesis after speaking with a genetic counselor. She mentioned absolutely nothing about the measurements of ventricles, nor did I ever hear the word 'hydrocephalus' come out of her mouth. After doing some research, I called her back that night and wanted to know very badly the measurements of the ventricles. She told me the left was 23mm and she said the right was somewhere around the same. I have a regular OB appointment on Sept. 3. On Sept. 7 I am being told to have an in depth ultrasound of her heart done, to make sure everything is fine there. They said she looked fine everywhere else, but often when there's a problem with the brain, there is also a problem with the heart. So they want this done to make sure everything looks normal. On Sept. 21 I am having an ultrasound with a specialist. My husband and I, and most of my family, are completely devastated by this news. My questions right now are,.. is her case comparable to these babies who turn out to be happy children? What is her chance of survival? I am feeling so lost, in such despair.
September 7, 2010
I had a fetal echo done yesterday so it is looking like this is isolated so far because everything with her heart looks great! She still kicking a lot and growing fast. I still have no clue how her VM is progressing. This is what I want to know the most. But they are waiting an entire month to look at her brain again from the day of diagnosis!! Shouldn't they be monitoring this much closer than a month later to watch what it's doing? A quick reminder to those who didn't catch my first post; my daughter was diagnosed with massive vm at 20 weeks u/s with 23mm vents. Amnio results returned normal chromosome structure and no infection.
September 21, 2010
I had the first ultrasound since diagnosis today. My baby girl's left vent measured in at 24 mm which is about the same it was a month ago, but the right vent has grown to 36 mm, whereas it was symmetrical. The doctor told me today that there's still a chance that she has holoprosencephaly, which a fetal MRI can hopefully determine if she has or not. The doctor told me today that it isn't the size of the ventricles that determines the neurological outcome of the baby, but the underlying cause. If she does have holoprosencephaly, then the outcome is very grim. If she does not have it, and the problem is caused by a blockage of the aqueduct, then there is a lot more hope. I am 25 weeks along now, and her head circumference is as if I were 30 weeks. I've been keeping the best positive mental attitude possible, but today is putting a strain on my state of mind. She still kicks me lots, which lets me know she is going to be a little fighter. We are two strong girls, we just have to hang in there.
October 7, 2010
We had our fetal MRI today. The radiologist and his colleagues all agree on two things. One being that she does not have holoprosencephaly. The second being that her ventriculomegaly is caused by aqueductal stenosis. The neonatologist I spoke with appeared to be very hopeful. This is the best news we could have received today. :)
November 10, 2010
Alright, I am 32 weeks pregnant now. To give a quick update, my baby girl was diagnosed with ventriculomegaly at our 20 wk u/s. I had another u/s today and her measurements are now really, really big and scary. Her left vent is 28 mm and the right one is now 63 mm. Her head circumference is 39 cm. and she is head down. The u/s technician said she weighs around 6 lbs. The plan is to do a c-section at 37 weeks, but with these new measurements I got today...... I want her out now. </span><span>They didn't tell me what her head circumference meant today, but I looked it up with I got home. A normal, term newborn baby's head circumference is between 33 cm. and 38 cm. So she is 32 weeks old in gestational age right now, and her head is technically that of a full term baby. I feel that the longer her hydrocephalus goes untreated, the higher the chance for her to have irreversible brain damage. I spoke with one of my genetic counselors today and she is discussing the u/s results with our MFM doctor to determine if a c-section would be best sooner than later.
December 11, 2010
Marlena Nichole Musgrave was born at 5:18 PM on December 7th. She weighed 7 lbs 13 oz and was 19 1/2 inches long with a head circumference of 42 cm. She received a VP programmable shunt about an hour shy of her being a day old. She is currently doing well. She is on room air, cries when she's not happy, has great eye movement control. We are currently working on getting her feedings going well. She is taking a bottle, but still is getting the hang of it. She is perfect to me. Her little misshapen head has a couple spots of bone protruding it seems like those weren't there before surgery and her head is a bit mushy in the back now which is a good sign I think.
Monday, February 7, 2011
Looking Back
A lot has happened since I first created this blog. I actually had forgot that I created it. It was interesting to reread my first blog entry. Marlena is now two months old and she's doing well at home! She was born at CMC in Charlotte, NC on Dec. 7th, 2010. She was 19 inches long and weighed 7 lbs 13 oz. after an amniocentesis to test her lung maturity came back good. She had to be resuscitated because she had so much amniotic fluid in her mouth. Her APGAR score was a 4 at the one minute mark, but quickly went up to a 9 at the five minute mark. The time we spent in the NICU felt more like a year, even though it was only around two weeks. Her head circumference stayed at around 42 cm her entire stay. Marlena had to get a ventriculoperitoneal shunt placed soon after her birth. She was 23 hours old when they took her to surgery. A shunt is tube that is placed into the ventricles of her brain and tracked under her skin to her abdominal area to reroute the fluid that is causing all of the compression. While Marley was recovering, we worked on her bottle feeds. She caught on pretty quickly, although the nurses there at the NICU weren't sure that Josh and I could get her to take every bottle. After we pressured them to let us go home, as the only thing holding us back from doing so was their suspicion, we didn't have any feeding issues whatsoever once we actually did get home on Dec. 19th.
Vincent absolutely adores his little sister. I was expecting lots of jealousy issues, but I was pleasantly surprised. He kisses her, sings to her, helps me burp her, hugs her, rubs her "ouchy" on her head. He's such a loving child. I could not ask for more.
We have since been to Duke University Hospital to have an experimental treatment done for Marlena. We saved her cord blood to have this procedure done. It costs around $14,000 per treatment and we will know if insurance covers it pretty soon; as it is experimental we can't get a pre-approval. We can have it done up to two more times. The idea is that the cord blood cells help repair any brain damage that has been done to Marley's precious little head. Even though we will never know if it has helped her, we feel content in knowing we have exhausted every single resource that could push her even a millimeter closer to her greatest potential. While we were there at Duke, my mother and I had the pleasure of meeting another couple who was going through the same things Josh and I were, at the same exact time. It was a great experience and I do believe Marley Bug has made a life long friend in Miss Claire Bear. Brad and Amy, you are amazing people. I am so happy we got to meet. If you ever read this, be sure to give Claire a kiss from us. <3
At Marlena's last neurosurgery follow up, the nurse practitioner wasn't too happy that Marley's head circumference hasn't plateaued yet. It was about 44 1/2 cm last week, however, her ventricles are going down in size. We know this from the cranial ultrasound that was done before the appointment. The nurse practitioner decided to turn Marley's pressure from 100 to 90. This will make the fluid flow faster. When I asked her if it could cause a shunt malfuntion, she explained how it could, and said the short answer: "Yes." I'm feeling a bit anxious about it, and watching her closely. We will see her actual neurosurgeon, Dr. McLanahan, in about five weeks, on March 15th. I hope we get good news. He's a wonderful, but desensitized man. I chalk it up to the fact if you're cutting on babies' brains, you probably need to detach yourself from humanity at some level.
Tomorrow morning, we'll have our second visit from her early intervention teacher, Miss Kim. She's a wonderful lady. We even sat at my dining room table last time and chatted for a while after the session was over. I'm really glad she and I "click." She will be helping me with physical therapy appointments for Marley as well. I am very concerned about Marley's development. I can't sit here and be oblivious to it to just sugar coat that she may likely have delays. I pray with all my heart that she won't have any at all. We'll take one day at a time, and each milestone she makes will be like a touchdown at the Super Bowl. Right now, I'm just focusing on what she can do. We will support her to the fullest degree. Delays or not, however concerned I may be, she will always be perfect in who she is; my child: God's child.
I am so very content with how things are going. Marlena is gaining weight, sleeping well, and pooping/peeing. She's currently doing everything she should, except for her head control. She has a 10-11 month old's head with her 2 month old body, so it may take a while before she gains control. She's beautiful and I love her so much. She's such a blessing and I have only but the Lord to thank.
Vincent absolutely adores his little sister. I was expecting lots of jealousy issues, but I was pleasantly surprised. He kisses her, sings to her, helps me burp her, hugs her, rubs her "ouchy" on her head. He's such a loving child. I could not ask for more.
We have since been to Duke University Hospital to have an experimental treatment done for Marlena. We saved her cord blood to have this procedure done. It costs around $14,000 per treatment and we will know if insurance covers it pretty soon; as it is experimental we can't get a pre-approval. We can have it done up to two more times. The idea is that the cord blood cells help repair any brain damage that has been done to Marley's precious little head. Even though we will never know if it has helped her, we feel content in knowing we have exhausted every single resource that could push her even a millimeter closer to her greatest potential. While we were there at Duke, my mother and I had the pleasure of meeting another couple who was going through the same things Josh and I were, at the same exact time. It was a great experience and I do believe Marley Bug has made a life long friend in Miss Claire Bear. Brad and Amy, you are amazing people. I am so happy we got to meet. If you ever read this, be sure to give Claire a kiss from us. <3
At Marlena's last neurosurgery follow up, the nurse practitioner wasn't too happy that Marley's head circumference hasn't plateaued yet. It was about 44 1/2 cm last week, however, her ventricles are going down in size. We know this from the cranial ultrasound that was done before the appointment. The nurse practitioner decided to turn Marley's pressure from 100 to 90. This will make the fluid flow faster. When I asked her if it could cause a shunt malfuntion, she explained how it could, and said the short answer: "Yes." I'm feeling a bit anxious about it, and watching her closely. We will see her actual neurosurgeon, Dr. McLanahan, in about five weeks, on March 15th. I hope we get good news. He's a wonderful, but desensitized man. I chalk it up to the fact if you're cutting on babies' brains, you probably need to detach yourself from humanity at some level.
Tomorrow morning, we'll have our second visit from her early intervention teacher, Miss Kim. She's a wonderful lady. We even sat at my dining room table last time and chatted for a while after the session was over. I'm really glad she and I "click." She will be helping me with physical therapy appointments for Marley as well. I am very concerned about Marley's development. I can't sit here and be oblivious to it to just sugar coat that she may likely have delays. I pray with all my heart that she won't have any at all. We'll take one day at a time, and each milestone she makes will be like a touchdown at the Super Bowl. Right now, I'm just focusing on what she can do. We will support her to the fullest degree. Delays or not, however concerned I may be, she will always be perfect in who she is; my child: God's child.
I am so very content with how things are going. Marlena is gaining weight, sleeping well, and pooping/peeing. She's currently doing everything she should, except for her head control. She has a 10-11 month old's head with her 2 month old body, so it may take a while before she gains control. She's beautiful and I love her so much. She's such a blessing and I have only but the Lord to thank.
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