I know there are a lot of you out there that read Claire's blog that are absolute prayer warriors! Therefore that's why I am always asking for prayers for Claire and for others. It's been proven that prayer works wonders and God hears each and every one. If Claire's not a testament to that, I don't know what is.
So I have a few prayer requests today and they are in no particular order:
- Please pray for Claire Elizabeth. She has been back in the hospital for about a week and not feeling like herself. Pray that the doctors can find a solution to her seizures, pray for healing of her little body, and pray for comfort for her family. I know how tired I feel some days and I honestly cannot even fathom how tired and exhausted Claire Elizabeth's parents are at this point. To read more about Claire Elizabeth, here is her blog: http://prayersforclaire.blogspot.com/
- Please pray for baby Parker Mills. His mom goes back today (I think) for in-utero measurements to get an estimate on how much the doctors think he weighs now. She should be about 35 weeks this week and I am hoping and praying she makes it all the way or even past her due date! This little baby needs as much time to grow as possible before he's born. Please pray for good test results today, for Parker's growth and development, and pray for healthy miracles for him. He doesn't have a blog, but has a Facebook page - search for Baby Parker Mills.
- Please pray for our friends Kim and Charles. They were very excited to be 12 weeks pregnant, but found out Monday that she has Blighted Ovum which in basic terms is a miscarriage. Basically the fertilized egg attaches to the uterus wall and a sac and placenta form, but no fetus. Your body believes you are pregnant and you have all of the symptoms b/c the placenta is forming and releasing all of the pregnancy hormones. So it was a complete shock when they had the ultrasound Monday and there was a sac and placenta but no baby. Please pray for comfort and understanding for them. To read more, their blog is: http://kimandcharlesbarrett.blogspot.com/
- Please pray for our friend Megan who had a place removed in her throat and is waiting to hear whether it is benign or not. Pray for benign results, quick healing, and comfort.
Thank you for taking the time to pray for our friends.
Love,
The Scott Family
Wednesday, November 9, 2011
Tuesday, November 8, 2011
Did you know? {A few premature birth facts}
Did you know that in an average week in NC, 325 babies are born preterm, 59 babies are born very preterm, 229 babies are born low birth weight, and 43 babies are born very low birth weight (VLBW). Claire was considered to be very preterm and very low birth weight at 29 weeks and at 3 lbs 2 oz. Very preterm is considered less than 32 completed weeks. Very low birth weight is considered less than 1500 grams or 3 1/3 lbs (Claire weighed 1420 grams).
Did you know that the specific causes of preterm birth are largely unknown? Approximately 1/4 of all preterm births are the result of medical intervention (meaning early C-sections or early induction as "preterm" is considered less than 37 weeks) and the remaining 75% of preterm births occur spontaneously. Research shows that the most consistent risk factors include a history of preterm birth, current multifetal pregnancy (multiples), and some uterine and/or cervical abnormalities. Other risk factors may include infection, diabetes, hypertension, late or no prenatal care, smoking, alcohol and drug use.
Did you know that "prematurity is the leading cause of newborn death and a major determinant of illness and disability among infants, including developmental delays, chronic respiratory problems, and vision and hearing impairment" according to the March of Dimes? Preemies can easily develop Retinopothy of Prematurity (ROP) which is a vision impairment. ROP is abnormal blood vessel development in the retina of the eye in a premature infant. You can read more about ROP here. Luckily, Claire did not develop ROP. She will go back in December to have her 1 year eye exam follow up and hopefully everything still looks good.
Just trying to continue the awareness of premature births during Prematurity Awareness Month! All information was taken from the March of Dimes Foundation.
Love,
The Scott Family
Did you know that the specific causes of preterm birth are largely unknown? Approximately 1/4 of all preterm births are the result of medical intervention (meaning early C-sections or early induction as "preterm" is considered less than 37 weeks) and the remaining 75% of preterm births occur spontaneously. Research shows that the most consistent risk factors include a history of preterm birth, current multifetal pregnancy (multiples), and some uterine and/or cervical abnormalities. Other risk factors may include infection, diabetes, hypertension, late or no prenatal care, smoking, alcohol and drug use.
Did you know that "prematurity is the leading cause of newborn death and a major determinant of illness and disability among infants, including developmental delays, chronic respiratory problems, and vision and hearing impairment" according to the March of Dimes? Preemies can easily develop Retinopothy of Prematurity (ROP) which is a vision impairment. ROP is abnormal blood vessel development in the retina of the eye in a premature infant. You can read more about ROP here. Luckily, Claire did not develop ROP. She will go back in December to have her 1 year eye exam follow up and hopefully everything still looks good.
Just trying to continue the awareness of premature births during Prematurity Awareness Month! All information was taken from the March of Dimes Foundation.
Love,
The Scott Family
Monday, November 7, 2011
More like mom or dad?
It's so funny when we go different places, most of the time people say how much Claire looks like Trent. And I totally agree! I have said that since before she was born when we saw the 4D ultrasound. But sometimes when we see people that don't know Trent, they always say -"Oh my gosh - Claire looks JUST like her Momma!!!" I just kind of chuckle and say, "Well, you ought to see her Daddy!"
Anyways, since Claire turned one, I haven't posted a list of things that she likes, dislikes, or is doing. So to make it fun, I thought I would do a contest. So I will write something that Claire likes or dislikes or whatever and then tell which parent she is more like with that like/dislike. Ok, that doesn't really make sense, so I will just start...........
1. Claire likes ice cream. She doesn't care for cake (see her 1st birthday posts). Score one point for Trent. I love cake and would eat cake over anything else (other than french fries).
2. Claire is a morning person and is very happy in the mornings. She bounces in her crib and is all smiles when I get her out every morning. Score one point for me! I am definitely a morning person and Trent is more of a night owl.
3. Claire's hair is getting curly. I guess I will have to say score one point for me. Trent's hair was not curly and is not curly now. My hair was kind of curly/wavy when I was a baby and can still be wavy if it's humid.
4. Claire loves to be outside. If she is upset or if nothing else makes her happy, just take her outside and she is as happy as a lark. Score one point for Trent. I like it outside, but prefer to be inside. Trent would live outside if he could. And I think Claire would too.
5. Claire loves to ride in the car. Score one point for Trent. Trent loves to drive! Me, on the other hand, prefer not to drive. I would rather just ride. I believe Claire will be a driver and not a rider.
6. When Claire gets tired, she rubs her hair on the back of her head behind her ear. For those who know me, no explanation needed. Score one point for me.
7. Claire is still "feisty" and on the go all the time. She doesn't require much sleep. Score one for Trent. I need my sleep and I am not feisty. She gets her determination, independence, and strong will from her Daddy. I am more like a dependent wallflower. ;)
8. Claire likes bread. We ordered take out at Outback the other night and all Claire wanted was that brown bread they serve. She wouldn't eat anything else and would yell at me when I wouldn't give her any bread. Score one for me as I love bread! Although I will not yell when I don't get it (most of the time)!
9. Claire loves to watch the news and the weather. And Wheel of Fortune. Although WOF is not one of Trent's favorites, the news and weather is. So score one for Trent.
10. Claire loves spaghetti (and Elmo)! As you can see from the picture below from this weekend. Notice the spaghetti in her hair, face, and really everywhere. She ate a whole plate though before she started playing with it. I like spaghetti and Trent likes spaghetti, so not really sure who loves it the most. I think Fuzz would have won on this one because he LOVED all Italian food! So I guess we will split this one and we both get a point.
So once you really look at her personality, I guess Claire is a pretty good mix of both of us! :)
Love,
The Scott Family
Anyways, since Claire turned one, I haven't posted a list of things that she likes, dislikes, or is doing. So to make it fun, I thought I would do a contest. So I will write something that Claire likes or dislikes or whatever and then tell which parent she is more like with that like/dislike. Ok, that doesn't really make sense, so I will just start...........
1. Claire likes ice cream. She doesn't care for cake (see her 1st birthday posts). Score one point for Trent. I love cake and would eat cake over anything else (other than french fries).
2. Claire is a morning person and is very happy in the mornings. She bounces in her crib and is all smiles when I get her out every morning. Score one point for me! I am definitely a morning person and Trent is more of a night owl.
3. Claire's hair is getting curly. I guess I will have to say score one point for me. Trent's hair was not curly and is not curly now. My hair was kind of curly/wavy when I was a baby and can still be wavy if it's humid.
4. Claire loves to be outside. If she is upset or if nothing else makes her happy, just take her outside and she is as happy as a lark. Score one point for Trent. I like it outside, but prefer to be inside. Trent would live outside if he could. And I think Claire would too.
5. Claire loves to ride in the car. Score one point for Trent. Trent loves to drive! Me, on the other hand, prefer not to drive. I would rather just ride. I believe Claire will be a driver and not a rider.
6. When Claire gets tired, she rubs her hair on the back of her head behind her ear. For those who know me, no explanation needed. Score one point for me.
7. Claire is still "feisty" and on the go all the time. She doesn't require much sleep. Score one for Trent. I need my sleep and I am not feisty. She gets her determination, independence, and strong will from her Daddy. I am more like a dependent wallflower. ;)
8. Claire likes bread. We ordered take out at Outback the other night and all Claire wanted was that brown bread they serve. She wouldn't eat anything else and would yell at me when I wouldn't give her any bread. Score one for me as I love bread! Although I will not yell when I don't get it (most of the time)!
9. Claire loves to watch the news and the weather. And Wheel of Fortune. Although WOF is not one of Trent's favorites, the news and weather is. So score one for Trent.
10. Claire loves spaghetti (and Elmo)! As you can see from the picture below from this weekend. Notice the spaghetti in her hair, face, and really everywhere. She ate a whole plate though before she started playing with it. I like spaghetti and Trent likes spaghetti, so not really sure who loves it the most. I think Fuzz would have won on this one because he LOVED all Italian food! So I guess we will split this one and we both get a point.
So once you really look at her personality, I guess Claire is a pretty good mix of both of us! :)
Love,
The Scott Family
Friday, November 4, 2011
Got milk? {another way to bring awareness to premature babies this month}
Well, breast milk that is. I know this can be a "weird" subject to some people, but breast milk is best for babies - especially premature babies. The problem is with some premature babies, the mother cannot produce enough milk for them when they are born because they are so early. It could be something physical like your body just isn't ready or it can definitely be emotional related or both. When you are stressed, you don't produce as much milk. And I can attest to just how stressed out you can be as a mother of a newly born preemie. Also when producing breast milk, the mother should be drinking TONS of water. If you are preemie mom like me, I spent every hour I could sitting in the NICU beside Claire. No food or drinks are allowed in the NICU, just in the hallway outside the rooms. So I definitely did not drink enough water or fluids.
Anyways, I read this report ABC News online this morning about the milk banks were in dire need of donor milk (http://abcnews.go.com/Health/w_ParentingResource/breast-milk-banks-struggle-meet-demand/story?id=14865732). I am not sure if it's because there are so many more preemies that need the breast milk or if it's just because mothers are not donating. Breast milk is so important especially for preemie babies. I remember the day Claire was born and vaguely remember the neonatologists asking me to sign a form allowing them to feed Claire donor breast milk. At first I was grossed out. I even asked if I could just use a friends breast milk! Seriously, at least I would know where it came from!
Of course, they said no, we couldn't do that. But that they screen donor milk like they do blood for blood transfusions. Very, very carefully. And that until my milk came in, Claire REALLY needed breast milk. So I agreed and I can't remember how long she got the donor milk, but it wasn't more than a day or so. I mean, she was literally only getting like 3 mLs of milk at a feeding to begin with. That's nothing.
Anyways, I pumped and froze my breast milk and transported it to Duke for them to feed Claire with in the NICU until she started having stomach issues and they switched her to formula. So Claire was on breast milk probably about 4-5 months. I had worked so hard (other preemie moms that had to pump constantly know EXACTLY what I mean - it's not the same as being able to nurse) to get all of that milk, I was not throwing it away!
So I researched and found a local milk bank in Raleigh, got the paperwork, answered all of the questions, had my lab work done, etc. Once I was approved, I shipped my over 200 ounces to Raleigh knowing another preemie like Claire would be able to use my milk to help them grow big and strong.
If you are breast feeding mom and have excess, I encourage you to consider donating your milk to the milk bank. You can make a huge difference in someones life. If you want more information on the milk bank I used in Raleigh, just let me know! You can make a one time donation like I did, or if you are still nursing, you can make continual donations as long as you can.
Love,
The Scott Family
Anyways, I read this report ABC News online this morning about the milk banks were in dire need of donor milk (http://abcnews.go.com/Health/w_ParentingResource/breast-milk-banks-struggle-meet-demand/story?id=14865732). I am not sure if it's because there are so many more preemies that need the breast milk or if it's just because mothers are not donating. Breast milk is so important especially for preemie babies. I remember the day Claire was born and vaguely remember the neonatologists asking me to sign a form allowing them to feed Claire donor breast milk. At first I was grossed out. I even asked if I could just use a friends breast milk! Seriously, at least I would know where it came from!
Of course, they said no, we couldn't do that. But that they screen donor milk like they do blood for blood transfusions. Very, very carefully. And that until my milk came in, Claire REALLY needed breast milk. So I agreed and I can't remember how long she got the donor milk, but it wasn't more than a day or so. I mean, she was literally only getting like 3 mLs of milk at a feeding to begin with. That's nothing.
Anyways, I pumped and froze my breast milk and transported it to Duke for them to feed Claire with in the NICU until she started having stomach issues and they switched her to formula. So Claire was on breast milk probably about 4-5 months. I had worked so hard (other preemie moms that had to pump constantly know EXACTLY what I mean - it's not the same as being able to nurse) to get all of that milk, I was not throwing it away!
So I researched and found a local milk bank in Raleigh, got the paperwork, answered all of the questions, had my lab work done, etc. Once I was approved, I shipped my over 200 ounces to Raleigh knowing another preemie like Claire would be able to use my milk to help them grow big and strong.
If you are breast feeding mom and have excess, I encourage you to consider donating your milk to the milk bank. You can make a huge difference in someones life. If you want more information on the milk bank I used in Raleigh, just let me know! You can make a one time donation like I did, or if you are still nursing, you can make continual donations as long as you can.
Love,
The Scott Family
Thursday, November 3, 2011
Get ready for more medical terminology
Well, I had a really cute post planned for today that I had already been working on. But I received news back from the pathologist at Seattle Children's last night on the testing he had been doing. So I will post on that today and save the cute stuff for another day.
Remember this post?? http://babyclairesblog.blogspot.com/2011/04/androgenetic-biparental-mosaicism.html You may want to read back through it first before reading this to refresh your memory. I know it's long, but it will help things make more sense instead of retyping it all again.
Ok, now that you have been refreshed from the previous posting, here we go. Dr. K basically said: "The results from our molecular studies are consistent with Androgenetic Biparental Mosaicism in Claire's liver tumor and placenta. No androgentic cells were detected in her blood, but the sensitivity of the assay is uncertain and low levels of androgenetic cells might be missed in the blood. In other published cases of ABM, blood often has no detectable androgenetic cells, possibly because they are not able to form mature blood cells or get out competed by biparental (normal) cells in the blood lineage." Since that somewhat made sense, he offered to discuss it over the phone so I called him last night to do just that.
Basically, Dr. K said the findings don't really change anything. It just means that we now understand what happened with Claire. He analyzed 5 samples - my blood, Trent's blood, Claire's blood, Claire's placenta tissue, and Claire's liver tissue. ABM basically means that there are excess paternal alleles in the cells. He tried to explain how they determine if there are excess alleles. In normal (biparental) cells, there should be a 1:1 ratio of maternal and paternal cells or really close to 1:1. The actual normal range is 0.8 to 1.8. When he tested my blood and Trent's blood, ours came back within the normal ranges between 0.9 and 1.3. When he tested Claire's liver and placental tissue, the ratios were outside of the norm. The paternal allele is overrepresented. He said this is EXACTLY what you would predict for ABM, PMD, and HMH (all of which Claire had/has).
The reason Claire's blood sample looked normal was because either it is normal and there are no ABM cells in her blood or the normal cells out compete the ABM cells. Or the testing that they use may not be sensitive enough to detect the ABM cells. It's so new they don't have a handle on how sensitive the testing needs to be to detect these cells in blood.
I asked the genetic questions. Would this reoccur in subsequent pregnancies of ours? Is this a genetic thing that either Trent and/or I passed on? Is this something Claire can pass on to her children? What they THINK they KNOW (this is doctor talk for "we are pretty sure we know, but can't make promises because you might sue us) to date is that they are unaware of any reported recurrences in subsequent pregnancies. So that's good news. And it's not something we passed on to Claire. I will explain that in a moment. They only have about 6 years worth of research on this so they can't say what it can or can't do in 30 years. And they can't say if it will or will not affect Claire's children. They just haven't tracked it that long. From what I understood, there have been only 3 cases EVER so far that have been clinically tested (not research tested) and Claire is 2 of those 3 tests. So yeah........
So to somewhat try to describe what actually happens to cause ABM which causes PMD and HMH (and could have possibly caused the Tetralogy of Fallot but they won't know that since they didn't get heart tissue to test) is this:
During the EARLIEST stage of fertilization of the egg, the cell is comprised of 1/2 a chromosome set from the dad and 1/2 a chromosome set from the mom. The "mysterious part" that they know happens but don't know why it happens, is next. Something happens and the pronucleus from the dad divides. So instead of 50% mom and 50% dad, you now have 75% dad and 25% mom. In the very next stage (the very first few cell divisions after fertilization) there is a "corrective phenomenon" where the cells divide again and then there are 3 paternal cells to 1 maternal cell. So if I understand it looks like this:
Remember this post?? http://babyclairesblog.blogspot.com/2011/04/androgenetic-biparental-mosaicism.html You may want to read back through it first before reading this to refresh your memory. I know it's long, but it will help things make more sense instead of retyping it all again.
Ok, now that you have been refreshed from the previous posting, here we go. Dr. K basically said: "The results from our molecular studies are consistent with Androgenetic Biparental Mosaicism in Claire's liver tumor and placenta. No androgentic cells were detected in her blood, but the sensitivity of the assay is uncertain and low levels of androgenetic cells might be missed in the blood. In other published cases of ABM, blood often has no detectable androgenetic cells, possibly because they are not able to form mature blood cells or get out competed by biparental (normal) cells in the blood lineage." Since that somewhat made sense, he offered to discuss it over the phone so I called him last night to do just that.
Basically, Dr. K said the findings don't really change anything. It just means that we now understand what happened with Claire. He analyzed 5 samples - my blood, Trent's blood, Claire's blood, Claire's placenta tissue, and Claire's liver tissue. ABM basically means that there are excess paternal alleles in the cells. He tried to explain how they determine if there are excess alleles. In normal (biparental) cells, there should be a 1:1 ratio of maternal and paternal cells or really close to 1:1. The actual normal range is 0.8 to 1.8. When he tested my blood and Trent's blood, ours came back within the normal ranges between 0.9 and 1.3. When he tested Claire's liver and placental tissue, the ratios were outside of the norm. The paternal allele is overrepresented. He said this is EXACTLY what you would predict for ABM, PMD, and HMH (all of which Claire had/has).
The reason Claire's blood sample looked normal was because either it is normal and there are no ABM cells in her blood or the normal cells out compete the ABM cells. Or the testing that they use may not be sensitive enough to detect the ABM cells. It's so new they don't have a handle on how sensitive the testing needs to be to detect these cells in blood.
I asked the genetic questions. Would this reoccur in subsequent pregnancies of ours? Is this a genetic thing that either Trent and/or I passed on? Is this something Claire can pass on to her children? What they THINK they KNOW (this is doctor talk for "we are pretty sure we know, but can't make promises because you might sue us) to date is that they are unaware of any reported recurrences in subsequent pregnancies. So that's good news. And it's not something we passed on to Claire. I will explain that in a moment. They only have about 6 years worth of research on this so they can't say what it can or can't do in 30 years. And they can't say if it will or will not affect Claire's children. They just haven't tracked it that long. From what I understood, there have been only 3 cases EVER so far that have been clinically tested (not research tested) and Claire is 2 of those 3 tests. So yeah........
So to somewhat try to describe what actually happens to cause ABM which causes PMD and HMH (and could have possibly caused the Tetralogy of Fallot but they won't know that since they didn't get heart tissue to test) is this:
During the EARLIEST stage of fertilization of the egg, the cell is comprised of 1/2 a chromosome set from the dad and 1/2 a chromosome set from the mom. The "mysterious part" that they know happens but don't know why it happens, is next. Something happens and the pronucleus from the dad divides. So instead of 50% mom and 50% dad, you now have 75% dad and 25% mom. In the very next stage (the very first few cell divisions after fertilization) there is a "corrective phenomenon" where the cells divide again and then there are 3 paternal cells to 1 maternal cell. So if I understand it looks like this:
1 mom and 1 dad = normal biparental daughter cell
1 dad and 1 dad = androgenetic biparental daughter cell
So Dr. K said that one cell is "normal" (having 23 chromosomes from mom and 23 chromosomes from dad) and the second cell is not normal (having 46 chromosomes like a normal cell, but all 46 are from the dad). Both sets of cells continue to divide to create the fetus and it looks like the ABM cells (all paternal cells) present themselves in the placenta and fetus (and liver in Claire and possibly other organs/places we don't know about). The doctors think that androgenetic cells (ABM) are not capable of doing what biparental (normal) cells can do. But they do know that ABM cells can make a bad placenta like mine with PMD, they can confirm that it puts the liver at risk for HMH that Claire had/has, and they think that ABM does not produce mature blood cells (since they can't detect them in the blood samples).
What they DON'T know is where all the androngenetic cells are in Claire's body and what that means for her.
They DO know that PMD (Placental Mesenchymal Dysplasia - the issues I had with Claire's placenta) is associated pretty much 100% of the time with ABM. They DO know that patients with PMD are at risk for HMH (Hepatic Mesenchymal Hamartomas - the liver cysts Claire had/has). They DO know that there is an increased likelihood to see hemangiomas with ABM (Claire does not have any that we know of). And they DO know that there is an increase chance of having Beckwith Wiedemann Syndrome with ABM (that we do not think Claire has). He said that we would be able to tell if Claire had full-blown BWS just by looking at her. They DO know that PMD is most frequently reported with ABM.
In terms of Claire - no one knows what it means for her now or in the future. That is somewhat reassuring but really somewhat daunting. I mean, they haven't found out anything that would show that we would need to be worried about anything. But at the same time, there has been less than 10 years worth of research (doctors didn't know about ABM until 6 years ago) on this, so they just don't have any data.
Dr. K said the good news was that if having ABM dramatically increased the risk for something else, you would have seen hints of it in by now in literature and it's just not there. So he said that was "reassuring."
On the flip side, Dr. K said that we know that Claire has ABM cells in her liver tumor so they are probably in her liver. And it's possible the ABM cells are in other parts of her body. The heart defect she has could be unrelated, but he suspects that this anomaly is from ABM. The cells could be really anywhere in her body and that runs the risk of them behaving abnormally at some point. But if she is at risk for that, there is not a huge increase in risk and there have been no reports of hints of anything like that happening in the literature.
Dr. K said that ABM has probably been around since the beginning of time. It's just that people never knew what it was or just didn't report it. People have PMD all the time but just don't know it or it doesn't get diagnosed and reported. With my original diagnosis, it wasn't PMD but severe placental hydrops. Until I pressed for more testing and research, that's what it would have been. Now we know that it really was PMD. He also said that ABM was recognized with PMD but is SO RARE along with HMH. HMH is a very rare tumor.
He did say we should be encouraged rather than discouraged. So that's good. I asked if he thought there was something that caused this weird error to happen right after fertilization. His hypothesis is that could us or Claire have possibly been predisposed to something to cause the error in cell division? He can't prove that anything like that happened. But he said it has been proven so far that there have been no reported recurrences in families. So that's reassuring. He mentioned again that most of the cases of ABM that they see have occurred in in-vitro fertilization probably due to the manipulation of the cells outside of the body promoting abnormal division. But in our case of natural conception, they have no idea.
So from Claire's standpoint, he said it was good to just know about the ABM, PMD, HMH connection. And to know that she has ABM cells present in parts of her body although we don't know every location. He said it was also good to know about the association with BWS in case something ever comes up that might be a place to start looking. He said it was good to have Claire's doctors aware since all of these things are just so completely rare.
So I guess my intuitions were right once again that I knew these things had to be related and that they weren't just coincidence. Was I hoping that ABM wasn't the cause and that they were just some fluke things? Of course. But does ABM change things? Not at all. It does give us some answers and that is a good thing.
Since you have endured this long, acronym-filled, medical jargon post, I will leave you with a cute picture of Claire in her jeggings yesterday! ;)
Love,
The Scott Family
What they DON'T know is where all the androngenetic cells are in Claire's body and what that means for her.
They DO know that PMD (Placental Mesenchymal Dysplasia - the issues I had with Claire's placenta) is associated pretty much 100% of the time with ABM. They DO know that patients with PMD are at risk for HMH (Hepatic Mesenchymal Hamartomas - the liver cysts Claire had/has). They DO know that there is an increased likelihood to see hemangiomas with ABM (Claire does not have any that we know of). And they DO know that there is an increase chance of having Beckwith Wiedemann Syndrome with ABM (that we do not think Claire has). He said that we would be able to tell if Claire had full-blown BWS just by looking at her. They DO know that PMD is most frequently reported with ABM.
In terms of Claire - no one knows what it means for her now or in the future. That is somewhat reassuring but really somewhat daunting. I mean, they haven't found out anything that would show that we would need to be worried about anything. But at the same time, there has been less than 10 years worth of research (doctors didn't know about ABM until 6 years ago) on this, so they just don't have any data.
Dr. K said the good news was that if having ABM dramatically increased the risk for something else, you would have seen hints of it in by now in literature and it's just not there. So he said that was "reassuring."
On the flip side, Dr. K said that we know that Claire has ABM cells in her liver tumor so they are probably in her liver. And it's possible the ABM cells are in other parts of her body. The heart defect she has could be unrelated, but he suspects that this anomaly is from ABM. The cells could be really anywhere in her body and that runs the risk of them behaving abnormally at some point. But if she is at risk for that, there is not a huge increase in risk and there have been no reports of hints of anything like that happening in the literature.
Dr. K said that ABM has probably been around since the beginning of time. It's just that people never knew what it was or just didn't report it. People have PMD all the time but just don't know it or it doesn't get diagnosed and reported. With my original diagnosis, it wasn't PMD but severe placental hydrops. Until I pressed for more testing and research, that's what it would have been. Now we know that it really was PMD. He also said that ABM was recognized with PMD but is SO RARE along with HMH. HMH is a very rare tumor.
He did say we should be encouraged rather than discouraged. So that's good. I asked if he thought there was something that caused this weird error to happen right after fertilization. His hypothesis is that could us or Claire have possibly been predisposed to something to cause the error in cell division? He can't prove that anything like that happened. But he said it has been proven so far that there have been no reported recurrences in families. So that's reassuring. He mentioned again that most of the cases of ABM that they see have occurred in in-vitro fertilization probably due to the manipulation of the cells outside of the body promoting abnormal division. But in our case of natural conception, they have no idea.
So from Claire's standpoint, he said it was good to just know about the ABM, PMD, HMH connection. And to know that she has ABM cells present in parts of her body although we don't know every location. He said it was also good to know about the association with BWS in case something ever comes up that might be a place to start looking. He said it was good to have Claire's doctors aware since all of these things are just so completely rare.
So I guess my intuitions were right once again that I knew these things had to be related and that they weren't just coincidence. Was I hoping that ABM wasn't the cause and that they were just some fluke things? Of course. But does ABM change things? Not at all. It does give us some answers and that is a good thing.
Since you have endured this long, acronym-filled, medical jargon post, I will leave you with a cute picture of Claire in her jeggings yesterday! ;)
Love,
The Scott Family
Wednesday, November 2, 2011
November is Prematurity Awareness Month
That's right! This whole month I hope to bring awareness to premature births through Claire's blog. Claire's birth at 29 weeks was one thing that we were not prepared for to say the least. We had a little time to prepare for Claire's heart defect and to somewhat know a little about her liver cyst (well, we knew it was there but had no idea what it was and what it would end up doing). But having a preemie was the one thing I had not prepared myself for. None of my friends had ever had a preemie. I had never experienced anything like it.
According to the March of Dimes, every year there are 13 million babies born prematurely worldwide. Claire was one in 13 million (ha ha, she beats the old saying "one in a million"!). They created a map of the US grading each state on premature births. NC got a grade of D. Wow - that's pretty bad. I'm not really sure why NC is so bad??? Maybe as part of my awareness stuff this month, I will try to research that.
Anyways, premature birth is not something most people expect or prepare for. It's tough. When you have grown up your entire life knowing that your parents had 4 healthy children (I weighed 8 lbs, 8 oz, my sisters both weighed over 10 lbs, and my brother was almost 13 pounds), I never expected for our baby to weigh only 3 pounds 2 oz and be only 16 1/4" long. And prematurity doesn't just stop at the small size. Claire battled apnea, bradycardia, jaundice, blood transfusions, tube feedings, etc. due to her prematurity. We were not allowed to hold Claire until probably almost 48 hours after she was born, and then only got to hold her for 15 minutes a day.
Premature babies are still developing and need lots of quiet time so their brain can continue to grow. They don't like to be rubbed like full term babies because their skin is so thin and underdeveloped, it bothers them. To comfort preemies, you just place your hand on their head or on their body and hold it there. For preemies, kangaroo care is important. We got to put Claire skin to skin on our chests when we held her to let her feel comforted. When Claire was first born, she was so small, I could put her down the front of my shirt for kangaroo care with her legs and butt tucked in the front of my bra or tank top and her head would rest on my breast bone. That's how small she was.
Preemies like Claire have lots of IVs in them at all times. Doctors need permanent access to them in case an emergency arrives. Claire will always have little "dots" as scars from all of the IVs she had in her hands, feet, and wrists. Most of the time a PICC line has to be inserted which is kind of like a more permanent IV line except it is fed through a main vein/artery (?) in the arm and usually goes close to the baby's heart. This helps with not damaging the veins as much by putting so many meds in the little tiny veins.
Preemies are not born knowing how to suck and swallow like full term babies. This is something they have to be taught and learn while in the NICU. Pacis help a lot with teaching these skills so preemies get pacis early on. Until they can learn to suck and swallow without having bradycardias, they are fed through feeding tubes usually placed in their noses or mouths. A machine pumps the milk at a certain rate per hour to them. If they cannot have breast milk or formula, preemies are fed a yellow liquid called TPN that contains all the vitamins and nutrients they need until they can tolerate the milk/formula.
One of the biggest challenges for preemies is weight gain. If your baby is being moved around, not resting, and constantly fidgeting, they are going to burn way more calories than they take in and lose weight. So it's vital for your preemie to be as calm and still as possible and rest A LOT. Every ounce counts to a preemie.
Preemies have muscle issues too. If you think about it, a full term baby is balled up in the momma's belly for a while therefore he/she knows how to use those muscles to "cuddle" into a ball. Well preemies are so small they haven't gotten to the point of being in the fetal position in the momma's belly yet before they are born. So a lot of times when they are born, they are kind of all sprawled out. So they stayed tucked into foam filled snugly things in their incubators that wrap all around them from head to toe and around their bodies to make them feel like they are still in the womb. Or they are swaddled tightly in blankets all the time to help those core muscles. That's why there are not many pictures of Claire in her first few weeks of life without something bulky wrapped all around her, so you really can't see how small she actually was.
You might ask how you can prevent premature births. Well, I wish I had the answer. I know there are a lot of ways like not smoking, being healthy, resting, etc. But in my case, there really wasn't anything I could have done differently. Nothing. Don't worry, I have analyzed and analyzed it to see if there was, but no. The only thing that kept Claire from being born for a week was the fact the doctors did the amnio and reduced the amniotic fluid and the liver cyst fluid. And this was not something they could keep doing without the risk of miscarriage or premature birth. So not all premature births are preventable in my honest opinion.
It's so hard to remember how small Claire really was when she was born. I think back and remember that I thought all full term babies looked HUGE and that Claire was a "normal" size baby. I remember seeing Ava for the first time (she was born 2 weeks after Claire full term) and thinking she was a giant!
We have to accredit the NICU doctors and nurses at Duke for taking such good care of Claire for 99 days (and afterwards). Their knowledge, skills, compassion, understanding, and love for each of those babies is insurmountable. We all know that God is the Great Physician and that He is in total control of everything. But those nurses and doctors sure know how to take God's plan and put it into action for the best care for His miracles.
Love,
The Scott Family
According to the March of Dimes, every year there are 13 million babies born prematurely worldwide. Claire was one in 13 million (ha ha, she beats the old saying "one in a million"!). They created a map of the US grading each state on premature births. NC got a grade of D. Wow - that's pretty bad. I'm not really sure why NC is so bad??? Maybe as part of my awareness stuff this month, I will try to research that.
Anyways, premature birth is not something most people expect or prepare for. It's tough. When you have grown up your entire life knowing that your parents had 4 healthy children (I weighed 8 lbs, 8 oz, my sisters both weighed over 10 lbs, and my brother was almost 13 pounds), I never expected for our baby to weigh only 3 pounds 2 oz and be only 16 1/4" long. And prematurity doesn't just stop at the small size. Claire battled apnea, bradycardia, jaundice, blood transfusions, tube feedings, etc. due to her prematurity. We were not allowed to hold Claire until probably almost 48 hours after she was born, and then only got to hold her for 15 minutes a day.
Premature babies are still developing and need lots of quiet time so their brain can continue to grow. They don't like to be rubbed like full term babies because their skin is so thin and underdeveloped, it bothers them. To comfort preemies, you just place your hand on their head or on their body and hold it there. For preemies, kangaroo care is important. We got to put Claire skin to skin on our chests when we held her to let her feel comforted. When Claire was first born, she was so small, I could put her down the front of my shirt for kangaroo care with her legs and butt tucked in the front of my bra or tank top and her head would rest on my breast bone. That's how small she was.
Preemies like Claire have lots of IVs in them at all times. Doctors need permanent access to them in case an emergency arrives. Claire will always have little "dots" as scars from all of the IVs she had in her hands, feet, and wrists. Most of the time a PICC line has to be inserted which is kind of like a more permanent IV line except it is fed through a main vein/artery (?) in the arm and usually goes close to the baby's heart. This helps with not damaging the veins as much by putting so many meds in the little tiny veins.
Preemies are not born knowing how to suck and swallow like full term babies. This is something they have to be taught and learn while in the NICU. Pacis help a lot with teaching these skills so preemies get pacis early on. Until they can learn to suck and swallow without having bradycardias, they are fed through feeding tubes usually placed in their noses or mouths. A machine pumps the milk at a certain rate per hour to them. If they cannot have breast milk or formula, preemies are fed a yellow liquid called TPN that contains all the vitamins and nutrients they need until they can tolerate the milk/formula.
One of the biggest challenges for preemies is weight gain. If your baby is being moved around, not resting, and constantly fidgeting, they are going to burn way more calories than they take in and lose weight. So it's vital for your preemie to be as calm and still as possible and rest A LOT. Every ounce counts to a preemie.
Preemies have muscle issues too. If you think about it, a full term baby is balled up in the momma's belly for a while therefore he/she knows how to use those muscles to "cuddle" into a ball. Well preemies are so small they haven't gotten to the point of being in the fetal position in the momma's belly yet before they are born. So a lot of times when they are born, they are kind of all sprawled out. So they stayed tucked into foam filled snugly things in their incubators that wrap all around them from head to toe and around their bodies to make them feel like they are still in the womb. Or they are swaddled tightly in blankets all the time to help those core muscles. That's why there are not many pictures of Claire in her first few weeks of life without something bulky wrapped all around her, so you really can't see how small she actually was.
You might ask how you can prevent premature births. Well, I wish I had the answer. I know there are a lot of ways like not smoking, being healthy, resting, etc. But in my case, there really wasn't anything I could have done differently. Nothing. Don't worry, I have analyzed and analyzed it to see if there was, but no. The only thing that kept Claire from being born for a week was the fact the doctors did the amnio and reduced the amniotic fluid and the liver cyst fluid. And this was not something they could keep doing without the risk of miscarriage or premature birth. So not all premature births are preventable in my honest opinion.
It's so hard to remember how small Claire really was when she was born. I think back and remember that I thought all full term babies looked HUGE and that Claire was a "normal" size baby. I remember seeing Ava for the first time (she was born 2 weeks after Claire full term) and thinking she was a giant!
We have to accredit the NICU doctors and nurses at Duke for taking such good care of Claire for 99 days (and afterwards). Their knowledge, skills, compassion, understanding, and love for each of those babies is insurmountable. We all know that God is the Great Physician and that He is in total control of everything. But those nurses and doctors sure know how to take God's plan and put it into action for the best care for His miracles.
Love,
The Scott Family
Tuesday, November 1, 2011
Claire's first trick or treating adventure
Claire had fun last night trick or treating! I think she would have had more fun it we had just walked around a neighborhood instead of getting in and out of the car seat a lot. That's the only part she hated. As soon as she got out of the car, she was laughing, kicking, and having a ball!
Our first stop was Uncle Phillip and Aunt Brandy's house. Claire went straight for her Daddy's favorite candy - a Reese's Peanut Butter Cup! She then started looking out their front door at all of the other trick or treaters (they had LOTS).
Our second stop was Great Granny and Great Granddaddy's house. Claire enjoyed sitting with each of them and playing with their dog Max. Great Granddaddy made sure Great Granny gave Claire lots of his Baby Ruth bars (since he said Great Granny didn't want him to eat all of them!).
Our next stop was Paul and Meredith's house next door to Granny and Big Daddy's house. They had their front porch all decorated and it was so festive! Claire got a Tootsie Roll (Momma's fav) and a bat.
We had to walk next door to trick or treat at Granny and Big Daddy's house. Big Daddy gave Claire some Dots and she really liked shaking them.
We swung by Grandma Neat Neat's house but didn't get out of the car. She decided to just meet us at Mimi and Grandpa's house. So that was our final stop. Claire got some books, candy, baby food, and Cheetos. Connor and Anna stopped by so we all go to see each other and it worked out great. Claire was amazed at this singing hamster that sang "Monster Mash" and had a chain in it's hand that he swung around in circles. It was funny! I tried to video a little of it below.
All in all it was a fun time!
Love,
The Scott Family
Our first stop was Uncle Phillip and Aunt Brandy's house. Claire went straight for her Daddy's favorite candy - a Reese's Peanut Butter Cup! She then started looking out their front door at all of the other trick or treaters (they had LOTS).
Our second stop was Great Granny and Great Granddaddy's house. Claire enjoyed sitting with each of them and playing with their dog Max. Great Granddaddy made sure Great Granny gave Claire lots of his Baby Ruth bars (since he said Great Granny didn't want him to eat all of them!).
Our next stop was Paul and Meredith's house next door to Granny and Big Daddy's house. They had their front porch all decorated and it was so festive! Claire got a Tootsie Roll (Momma's fav) and a bat.
We had to walk next door to trick or treat at Granny and Big Daddy's house. Big Daddy gave Claire some Dots and she really liked shaking them.
We swung by Grandma Neat Neat's house but didn't get out of the car. She decided to just meet us at Mimi and Grandpa's house. So that was our final stop. Claire got some books, candy, baby food, and Cheetos. Connor and Anna stopped by so we all go to see each other and it worked out great. Claire was amazed at this singing hamster that sang "Monster Mash" and had a chain in it's hand that he swung around in circles. It was funny! I tried to video a little of it below.
All in all it was a fun time!
Love,
The Scott Family
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