Last Monday, Mila was not feeling very well. She had a slight fever in the evening. I gave her Tylenol before bedtime and the fever was gone by morning. But oh what did greet me in the morning! She had tiny little bumps covering her hands, feet and mouth! I had heard that someone at Mila's school had the hand foot and mouth disease. After a little research I discovered that it was going around, sweeping through the city from preschool to preschool.
I immediately thought of Niko. Shit! Mila is very affectionate with Niko… touching, kissing, hugging. Niko doesn't have much of an immune system. A cold or fever can lead to pneumonia or death. I emailed their doctor right away. He said that we shouldn't worry. This disease usually doesn't affect infants under one year nor adults. You don't really treat the virus. It just plays itself out in about 5 to 7 days. By the time the fever fades and the bumps show, the kid is no longer contagious. To play it safe, I kept them apart and Mila spent the night at my mom's. But to my horror, Niko developed the little bumps all over her hands, feet and a couple under her mouth. One day later some of Mila's bumps turned into big blisters!
And to make matters worst, I had a fever Wednesday night and then I developed the bumps on my hands and feet two days later.
So far, from my experience when the doctors say that we have nothing to worry about, it means it's time to worry like hell.
By the way, if you're curious what the hand foot and mouth disease feels like, it feels like there are thousands of needles pricking you at once, going in and out all day long. And your shoes feel like they're 2 sizes too small and everything chafes. I tried to ignore it because I've got other things to worry about. However I could barely put weight on my burning feet. We are all better now.
I'm constantly surprised by how incredibly strong children are. The pain that they go through is so humbling. When they feel pain, like teething or all the disgusting viruses they are plagued with from school, you just kiss them and tell them to go to sleep. This is the first time I've shared an illness with Mila and it's shocking how well she handled this. She just shook it off. Niko as well. She seemed to have hardly noticed at all. Mila's earned some gummy coca cola bottles. And Niko, well more boob.
Tuesday, August 28, 2012
Monday, August 27, 2012
Eyes and Heart
Last Friday, Niko had an eye exam and an echocardiogram. She did exceptionally well. I was so very proud of her. She never cried or protested.
I ask the same question to each doctor who looks at Niko now, “Have you ever met an I-Cell patient?” Unfortunately they all tell me no.
Report
Eyes: Everything checked normal. No clouding of the cornea. Retinas look normal. She is a little far sighted but that is normal for babies this age. The ophthalmologist told us to come back in a year and I negotiated a 6-month revisit. Annual checkups would be routine. Niko care is not routine care. There is no telling the pace at which her condition will progress. I need to stay on top of all her little parts (and there are so many little parts – eyes, ears, nose, lungs, heart, liver, spleen, bones, joints, the list goes on and on) to provide her with all the help she needs.
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| at the eye exam |
Heart: The results of the echocardiogram was normal; no valvular thickening or any ventricular enlargement. This is a huge relief. Of all the things that can go wrong, I worry about her little heart the most. My name means heart and so the heart has always been quite symbolic to me. I am just not ready to deal with a damaged heart yet. It’s only been a week since the diagnosis. I need more time.
On a bright note, the echocardiogram technician was quite a zen master. He had the calmest energy – calm eyes, calm voice, calm hands, calm center. Niko seemed to have connected with him. He really talked with her, not to me. He kept calling her his “little dumpling”. He stroked her and spoke oh-so gently to her during the whole echo. I asked him the same question (if he’s met an I-Cell patient). He said no, but he has seen a lot of unusual heart conditions in young patients, but none with the official diagnosis. He also told me that he did his homework on I-Cell the previous day so that he would know what to look for in Niko’s exam. I asked him if he works with children much. And he replied that he is the specialist for children and has worked with children for over 20 years. I was very happy to hear this because this means that we will most likely work with him again in subsequent echos. Funny how something like this can make me happy now.
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| She seemed to enjoy the echo, is that possible? |
10 lbs!
Niko finally hit 10 lbs. Last Friday the 23rd, she weighed 10lbs 1oz. I'm so proud of her!
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| Here's a leg shot. |
Wednesday, August 22, 2012
End of the Pity Party
After receiving the diagnosis last Friday, I thought that I would stop posting to this blog. I wanted to do this blog for Nikola. Therefore I didn't see the point anymore.
After shedding many gallons of tears, I've decided to end this pity party. I'll continue to do this blog. And I am doing it for Nikola. I'm not the cheesy sentimental type. But I think everyone gets to be emotional and sentimental at least a few times in their lives. So here's my cheesy line. This blog allows Niko to be heard.
This blog will be shared with our families and closest friends who would like updates on Niko. I know a lot of people are asking about Niko's condition and we haven't shared the news with anyone other than family yet. I can barely speak due to the hard lump in my throat. Each sentence takes about five minutes to complete. So rather than repeating the painful monologue over and over again, this blog is easier for me and Niko. Niko doesn't like it when she's drenched in my tears, and since I carry her all the time, she cannot escape the waterfall.
So this is the end of my pity party. My main focus now is to give her lots of love, the best quality of life we can afford, and make her feel the least amount of pain as possible. It's also my job to stay on top of all her medical needs and learn all I can about I-Cell. Most of the doctors we met admitted that they know very little about the condition and have never met any I-Cell patients at Kaiser. I cannot rely on them to know all the answers nor foresee the exact direction of the I-Cell progression.
I'm also going to enjoy this time when she is still, more or less, a "normal" baby. She still looks pretty normal if you are not studying her specifically for signs of I-Cell. I'm going to enjoy the interaction with strangers while they are still giving us looks of awe, rather than looks of pity.
Ironically, I'm now fully enjoying and appreciating motherhood. Life has a weird way of teaching perspective. The responsibility of raising a Nobel Prize winning overachiever has been lifted off me. Conversely I don't have to worry that she will become a serial killer one day due to my bad parenting. Sadly but plainly, because I don't have to worry about her future I can focus on making her smile by reading books in my best character voice. I can smother her with boob time without thinking that I'm spoiling her. I can focus on the current moment without any nagging worries of the future. I'm enjoying being a better mother to Mila as well. I think we're having more fun already.
After shedding many gallons of tears, I've decided to end this pity party. I'll continue to do this blog. And I am doing it for Nikola. I'm not the cheesy sentimental type. But I think everyone gets to be emotional and sentimental at least a few times in their lives. So here's my cheesy line. This blog allows Niko to be heard.
This blog will be shared with our families and closest friends who would like updates on Niko. I know a lot of people are asking about Niko's condition and we haven't shared the news with anyone other than family yet. I can barely speak due to the hard lump in my throat. Each sentence takes about five minutes to complete. So rather than repeating the painful monologue over and over again, this blog is easier for me and Niko. Niko doesn't like it when she's drenched in my tears, and since I carry her all the time, she cannot escape the waterfall.
So this is the end of my pity party. My main focus now is to give her lots of love, the best quality of life we can afford, and make her feel the least amount of pain as possible. It's also my job to stay on top of all her medical needs and learn all I can about I-Cell. Most of the doctors we met admitted that they know very little about the condition and have never met any I-Cell patients at Kaiser. I cannot rely on them to know all the answers nor foresee the exact direction of the I-Cell progression.
I'm also going to enjoy this time when she is still, more or less, a "normal" baby. She still looks pretty normal if you are not studying her specifically for signs of I-Cell. I'm going to enjoy the interaction with strangers while they are still giving us looks of awe, rather than looks of pity.
Ironically, I'm now fully enjoying and appreciating motherhood. Life has a weird way of teaching perspective. The responsibility of raising a Nobel Prize winning overachiever has been lifted off me. Conversely I don't have to worry that she will become a serial killer one day due to my bad parenting. Sadly but plainly, because I don't have to worry about her future I can focus on making her smile by reading books in my best character voice. I can smother her with boob time without thinking that I'm spoiling her. I can focus on the current moment without any nagging worries of the future. I'm enjoying being a better mother to Mila as well. I think we're having more fun already.
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| Today Niko has given me some no-cry awake time. |
Monday, August 20, 2012
The future
Before the devastating news we received last Friday, I was so worried about Niko. I was worried that she might have a form of skeletal dysplasia that would put her at a disadvantage for the rest of her life. I was worried about her tough existence of being teased or stared at her whole life. I was worried about her finding someone to love her and marry her and take care of her. I was worried about the odds of her passing the disorder to her children. I was worried about her future.
Now I'm worried that she'll live to an age when she will realize that she has no future.
I'm unable to understand my feelings right now. I weave through sheer devastation and denial.
I'm somewhat relieved that we know the answer now, which is the only thing that is lifting the weight off my chest, but not my heart. No more self diagnoses via Internet. I had actually found and read about I-Cell online but dismissed it. In the history of Internet-self-diagnoses, I believe the outrageous worst case scenarios are often unlikely and placed online only to scare and punish the over zealous search junkies. In my case, I hit the jackpot.
I don't know how to accept the fact that nothing can be done. Nothing can be changed. All I can do is love her and try to relieve her of pain. With so many serious medical issues that she will face I know this will be a very gruesome and tiring job.
Up till now, my solution for Mila's pain has always involved kisses. When Mila falls and scrapes herself, I kiss her wounds. It stops her tears immediately. I don't know what to do about a leaking heart. I can't fix oxygen shortages. I can't stop her joints from stiffening and fusing. What will I do if her liver doubles in size in one month? I can't do anything for her. I don't know how to protect her and make her better. I don't know how to stop her tears. What am I to do?
Now I'm worried that she'll live to an age when she will realize that she has no future.
I'm unable to understand my feelings right now. I weave through sheer devastation and denial.
I'm somewhat relieved that we know the answer now, which is the only thing that is lifting the weight off my chest, but not my heart. No more self diagnoses via Internet. I had actually found and read about I-Cell online but dismissed it. In the history of Internet-self-diagnoses, I believe the outrageous worst case scenarios are often unlikely and placed online only to scare and punish the over zealous search junkies. In my case, I hit the jackpot.
I don't know how to accept the fact that nothing can be done. Nothing can be changed. All I can do is love her and try to relieve her of pain. With so many serious medical issues that she will face I know this will be a very gruesome and tiring job.
Up till now, my solution for Mila's pain has always involved kisses. When Mila falls and scrapes herself, I kiss her wounds. It stops her tears immediately. I don't know what to do about a leaking heart. I can't fix oxygen shortages. I can't stop her joints from stiffening and fusing. What will I do if her liver doubles in size in one month? I can't do anything for her. I don't know how to protect her and make her better. I don't know how to stop her tears. What am I to do?
Diagnosis
I don't even know how to start this post. I haven't been able to verbally speak the words to inquiring friends. So perhaps typing is easier. Talking is difficult when choking back tears.
We had our meeting with the genetics team on Friday. As we waited in the delivery room, Niko's regular doctor showed up and told us that he was asked to join. I knew that was a bad sign. When we entered the conference room, besides the geneticist, the genetic counselor, Niko's regular doctor, a metabolic specialist from UCSF joined us in the room.
We all took one heavy breath. The geneticist began. She said that they were able to conclusively confirm the diagnosis based on the blood test. Niko has a very rare condition called I-Cell (Mucolipidosis Type II). It's so rare that the statistics are not often agreed upon. It occurs in approximately 1 out of 640,000 births, less than one birth a year in California.
This is a progressively destructive terminal disease. Most babies show obvious symptoms by month 6, including physical irregularities, delayed developments and failure to thrive. Children with I-Cell will usually develop respiratory problems, enlargement of certain organs like the liver, heart and spleen, many experience leakage of the heart valves. Most children stop growing, in height, by the second year. Cognitive development is questionable. Affected children are plagued with stiff joints, limited mobility, clouding of vision, recurring ear infections, recurrent respiratory tract infections (like pneumonia). Children with I-Cell generally live for 5 - 7 years.
In layman's terms, I-Cell Disease (or ML II) inhibits the body's cells from recycling substances throughout the body, so the cells begin to accumulate the excess carbohydrates and enzymes and fail to function properly.
This is a genetic condition. Both parents have to be carriers, which is why it's so rare. It's rare enough for one person to carry this gene, but to find a partner with the same recessive gene is highly unlikely. I thought this happens to inbred folks in the south, certainly not to a mother from China and a father, born in Turkey, of German and Eastern European decent. Knowing that we are both carriers, we now know that we have a 25% chance of having an I-Cell baby with each pregnancy. This still blows my mind.
Unfortunately, there is no cure for I-Cell. Nothing can be done. There are some experimental procedures, by means of bone marrow transplant, to perhaps delay the progression of deterioration. But based on what I've read, kids of the bone marrow transplants are still dying at around age 5. This condition is so rare, that very little funding is directed to finding a cure or R&D.
Before I had the chance to ask for a second opinion the geneticist brought down the second blade in the guillotine, in case my hopes were not already properly severed. The urine test results just came in that afternoon confirming I-Cell.
Initially I started this blog for Niko. I wanted her to have a pretty well documented blog of her medical records if she has any issues in the future. I wanted her to read about her childhood. It turns out that she will likely never learn to read.
Here is my I-Cell baby. This is the face that I have come to love more than all the beautiful objects on earth.
We had our meeting with the genetics team on Friday. As we waited in the delivery room, Niko's regular doctor showed up and told us that he was asked to join. I knew that was a bad sign. When we entered the conference room, besides the geneticist, the genetic counselor, Niko's regular doctor, a metabolic specialist from UCSF joined us in the room.
We all took one heavy breath. The geneticist began. She said that they were able to conclusively confirm the diagnosis based on the blood test. Niko has a very rare condition called I-Cell (Mucolipidosis Type II). It's so rare that the statistics are not often agreed upon. It occurs in approximately 1 out of 640,000 births, less than one birth a year in California.
This is a progressively destructive terminal disease. Most babies show obvious symptoms by month 6, including physical irregularities, delayed developments and failure to thrive. Children with I-Cell will usually develop respiratory problems, enlargement of certain organs like the liver, heart and spleen, many experience leakage of the heart valves. Most children stop growing, in height, by the second year. Cognitive development is questionable. Affected children are plagued with stiff joints, limited mobility, clouding of vision, recurring ear infections, recurrent respiratory tract infections (like pneumonia). Children with I-Cell generally live for 5 - 7 years.
In layman's terms, I-Cell Disease (or ML II) inhibits the body's cells from recycling substances throughout the body, so the cells begin to accumulate the excess carbohydrates and enzymes and fail to function properly.
This is a genetic condition. Both parents have to be carriers, which is why it's so rare. It's rare enough for one person to carry this gene, but to find a partner with the same recessive gene is highly unlikely. I thought this happens to inbred folks in the south, certainly not to a mother from China and a father, born in Turkey, of German and Eastern European decent. Knowing that we are both carriers, we now know that we have a 25% chance of having an I-Cell baby with each pregnancy. This still blows my mind.
Unfortunately, there is no cure for I-Cell. Nothing can be done. There are some experimental procedures, by means of bone marrow transplant, to perhaps delay the progression of deterioration. But based on what I've read, kids of the bone marrow transplants are still dying at around age 5. This condition is so rare, that very little funding is directed to finding a cure or R&D.
Before I had the chance to ask for a second opinion the geneticist brought down the second blade in the guillotine, in case my hopes were not already properly severed. The urine test results just came in that afternoon confirming I-Cell.
Initially I started this blog for Niko. I wanted her to have a pretty well documented blog of her medical records if she has any issues in the future. I wanted her to read about her childhood. It turns out that she will likely never learn to read.
Here is my I-Cell baby. This is the face that I have come to love more than all the beautiful objects on earth.
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| 3 months old |
Friday, August 17, 2012
Observations So Far
Today at 4pm, we will meet with the geneticists. They have a diagnosis for us. They were able to determine a diagnosis based on the blood test results.
About a month ago, we got our first round of X-rays. On the 19th of July, the X-rays confirmed my observation that Niko's chest is very small and she's got a pronounced curvature in her spine, a condition called Kyphosis. Since then, we've had full body X-rays, blood tests, urine tests, and meetings with the genetics team.
For about a month, I've been a wreck. There were only three days out of this month that I have not cried. And today at 4pm, we will find out what condition Nikola has. I'm so nervous and upset, I can't even breathe properly anymore.
Before this meeting today, I figure I should list the observations that I have noticed about Nikola and the X-ray results. The bright side is after 4pm, all these traits won't have the same weight on me anymore. After 4pm today, I will not have to research frantically in a ridiculous attempt to self diagnose. I will not drive myself crazy anymore by comparing photos of babies and children online to the appearance of my own baby. But unfortunately after 4pm today, I will no longer have the hope that perhaps Nikola is "normal".
The moment Niko was born and they placed her on my chest, aside from the relief of labor being done, I noticed that there was something about her that didn't resemble the looks of other babies. I just couldn't put my finger on it. From head to toe, there were many details that seemed different. If I had not had Mila, and Niko were my first child, I don't think I would have picked up on so many irregularities. Below are my observations and the X-ray results. So here they are.
HEAD
Nose: The bridge of her nose is rather flat and her nostrils seem flared all the time. Also I cannot pinch her nostrils shut. The cartilage is really firm.
Mouth: Her gums are really thick, but the outline of each of her teeth beneath is really pronounced, giving her a very gummy appearance.
X-RAYS: The radiologist determined that the X-ray of her skull is normal. Also the geneticist and SD specialists agreed that her facial features are coarse.
MID-SECTION
Chest: Her chest seems very small and the X-ray confirms this.
Torso: Long compared to her limbs
Stomach: Her tummy is distended extending way beyond her small chest creating a pear shape.
Spine: Her lower spine curves out a lot, creating an exaggerated C shape.
Hands: Her thumbs are always tucked in against her palms and they seem long compared to her other fingers. Her hands are often positioned in a way that appears similar to someone with arthritis.
X-RAYS: The bones around her shoulders are "abnormal". They use the term "abnormal" a lot when referring to her bones which drives me nuts because that doesn't explain anything. But I'll use that term here because that is how it was explained to me. She has kyphosis of the spine. A few of her spinal discs are shaped abnormally. The X-ray revealed a lot of gas in her intestine which explains her constant pain after feeding and her lack of interest in nursing.
LOWER HALF
Legs: Her femurs do seem a little on the short side. But ironically, even though this was the major concern during prenatal ultrasounds, her legs are the least concerning now.
X-RAYS: Her foot bones are some what abnormal.
DEVELOPMENTAL MILESTONES
Niko is somewhat behind in hitting her milestones. Here is her three month performance.
Head: She is still unable to hold up her head. Her head is still wobbly when being held upright.
Tummy Time: She absolutely hates it. She doesn't lift her head for even a second (she did it once when she was about 7 weeks. She even turned her head right and left, but never again). Her face is just flat on the blanket.
Hands: She doesn't try to grab anything. She doesn't seem to want to bat at objects either.
Eyes: She tracks very well and has been doing this for over a month. She also turns her head in my direction if I move around her.
Ears: She hears quite well. She startles and jumps at sudden loud sounds. In fact, she's a very light sleeper due to this.
Feeding: Awful! Actually she's regressing. We rented a hospital grade scale so that we can monitor her feedings. At around one month, she used to be able to drink 70ml - 100ml per feeding. She also used to take both the breast and the bottle. Now at three months, she grazes all day. She drinks about 30ml per feeding, so she's on the breast every 40 minutes to an hour. And she absolutely rejects the bottle. I am her topless slave.
Communication: She doesn't babble and she just starting smiling at three months, though she's not very generous with her smiles.
Sitting: She can't sit for too long. And when I say sitting, I mean reclining in a bouncer seat. Our theory is that the kyphosis puts too much pressure on her spine and it pains her.
That's it for now. The geneticists have ruled out any major form of skeletal dysplasia. They told me it's a metabolic issue. But the tone of the doctor's voice during our call yesterday was very heavy. I'm so afraid that we are looking at something way more serious. I'm holding my breath till 4pm today.
About a month ago, we got our first round of X-rays. On the 19th of July, the X-rays confirmed my observation that Niko's chest is very small and she's got a pronounced curvature in her spine, a condition called Kyphosis. Since then, we've had full body X-rays, blood tests, urine tests, and meetings with the genetics team.
For about a month, I've been a wreck. There were only three days out of this month that I have not cried. And today at 4pm, we will find out what condition Nikola has. I'm so nervous and upset, I can't even breathe properly anymore.
Before this meeting today, I figure I should list the observations that I have noticed about Nikola and the X-ray results. The bright side is after 4pm, all these traits won't have the same weight on me anymore. After 4pm today, I will not have to research frantically in a ridiculous attempt to self diagnose. I will not drive myself crazy anymore by comparing photos of babies and children online to the appearance of my own baby. But unfortunately after 4pm today, I will no longer have the hope that perhaps Nikola is "normal".
The moment Niko was born and they placed her on my chest, aside from the relief of labor being done, I noticed that there was something about her that didn't resemble the looks of other babies. I just couldn't put my finger on it. From head to toe, there were many details that seemed different. If I had not had Mila, and Niko were my first child, I don't think I would have picked up on so many irregularities. Below are my observations and the X-ray results. So here they are.
HEAD
Nose: The bridge of her nose is rather flat and her nostrils seem flared all the time. Also I cannot pinch her nostrils shut. The cartilage is really firm.
Mouth: Her gums are really thick, but the outline of each of her teeth beneath is really pronounced, giving her a very gummy appearance.
X-RAYS: The radiologist determined that the X-ray of her skull is normal. Also the geneticist and SD specialists agreed that her facial features are coarse.
MID-SECTION
Chest: Her chest seems very small and the X-ray confirms this.
Torso: Long compared to her limbs
Stomach: Her tummy is distended extending way beyond her small chest creating a pear shape.
Spine: Her lower spine curves out a lot, creating an exaggerated C shape.
Hands: Her thumbs are always tucked in against her palms and they seem long compared to her other fingers. Her hands are often positioned in a way that appears similar to someone with arthritis.
X-RAYS: The bones around her shoulders are "abnormal". They use the term "abnormal" a lot when referring to her bones which drives me nuts because that doesn't explain anything. But I'll use that term here because that is how it was explained to me. She has kyphosis of the spine. A few of her spinal discs are shaped abnormally. The X-ray revealed a lot of gas in her intestine which explains her constant pain after feeding and her lack of interest in nursing.
LOWER HALF
Legs: Her femurs do seem a little on the short side. But ironically, even though this was the major concern during prenatal ultrasounds, her legs are the least concerning now.
X-RAYS: Her foot bones are some what abnormal.
DEVELOPMENTAL MILESTONES
Niko is somewhat behind in hitting her milestones. Here is her three month performance.
Head: She is still unable to hold up her head. Her head is still wobbly when being held upright.
Tummy Time: She absolutely hates it. She doesn't lift her head for even a second (she did it once when she was about 7 weeks. She even turned her head right and left, but never again). Her face is just flat on the blanket.
Hands: She doesn't try to grab anything. She doesn't seem to want to bat at objects either.
Eyes: She tracks very well and has been doing this for over a month. She also turns her head in my direction if I move around her.
Ears: She hears quite well. She startles and jumps at sudden loud sounds. In fact, she's a very light sleeper due to this.
Feeding: Awful! Actually she's regressing. We rented a hospital grade scale so that we can monitor her feedings. At around one month, she used to be able to drink 70ml - 100ml per feeding. She also used to take both the breast and the bottle. Now at three months, she grazes all day. She drinks about 30ml per feeding, so she's on the breast every 40 minutes to an hour. And she absolutely rejects the bottle. I am her topless slave.
Communication: She doesn't babble and she just starting smiling at three months, though she's not very generous with her smiles.
Sitting: She can't sit for too long. And when I say sitting, I mean reclining in a bouncer seat. Our theory is that the kyphosis puts too much pressure on her spine and it pains her.
That's it for now. The geneticists have ruled out any major form of skeletal dysplasia. They told me it's a metabolic issue. But the tone of the doctor's voice during our call yesterday was very heavy. I'm so afraid that we are looking at something way more serious. I'm holding my breath till 4pm today.
Thursday, August 16, 2012
Birth Story
Niko is already three months old. But I want to go back a bit to her birth and write my posts in chronological order so that if I reread these in the future, or if Niko wants to read this blog when she's older, it'll all make sense more easily.
The birth story was a traumatic one.
Kiril and I ate dinner at Chez Panisse on Friday, the night before. Earlier that day I dropped Mila off at my mom's to spend the night so that Kiril and I can eat our "last supper". I wasn't certain but I felt that I might go into labor that weekend, Sunday was my guess. I had been feeling braxton hicks contractions throughout my third trimester. But they were getting more frequent, maybe a few contractions every hour without a consistent rhythm. During dinner, they were coming on stronger, even somewhat painful. But it didn't stop me from enjoying my meal. It was Chez Panisse for Christ's sake! Kiril asked me to promise that I would not go into labor that night so that he could have 2 glasses of wine and eat heartily. I told myself not to pig out with the possibility of labor looming over me, but what the hell! It was delicious and I didn't regret it.
After dinner, we went home and slept for a few hours. At around 1am I started to time my contractions. They were definitely 5 minutes apart. They weren't painful but they were consistent. So I jumped into the shower and washed some dishes, folded some laundry, tidied up a bit. I certainly didn't want to come home to a mess after delivery. I called labor & delivery and they told me to go into the hospital right away. A few weeks earlier, I was tested positive for Strep B (occurs in 25% of pregnancies), so they wanted to administer at least a round, if not two, of antibiotics in me before I deliver. I was instructed NOT to labor at home. If it were not for those instructions, I would not have called the hospital. The contractions were so mild.
When I checked into the hospital at 4:45am, I felt like "the girl who cried contractions". They were so mild, I thought surely they would laugh and send me home. They checked me and told me I was 3cm dilated. They said that I had the option to go home, but they did an ultrasound and saw that my bag of waters was low. So they gave me a room and if I needed a boost, they would induce me.
They administered the antibiotic at around 6am. The nurse said if I didn't deliver by 10am, they would give me another dose. I thought Ha! 10am? She's on crack. I took over 30 hours to deliver Mila and those contractions were off the charts. How would it be possible to deliver in the next 4 hours? All seemed fine for a while. In fact the contractions were backing down, and were more than 5 minutes apart. Until suddenly they just knocked me over. They went from easy breezy to full on collision with a semi-truck. They were unlike anything I've ever felt with the first delivery. I asked first for the drip (I forget what that's called at the moment)…. the drip through the IV. It was delicious. I was deliriously high from that for about 4 minutes until the next contraction. It felt as if the hand of an invisible giant was throwing me across the room, to and fro. The pain was all consuming and unbearable. I asked for the epidural, not knowing if I can survive the next contraction. The anesthesiologist stabbed me with the giant needle and it was in, though the drug was only active on one side of my body. They checked me again after the insertion and I was 10 cm dilated, fully effaced, baby's head was down. Luckily I asked for the epidural at that time because if they had checked me first I'm sure they would have denied me the epidural because it was too late.
My nurse actually took a break at this time. A fill-in nurse, who didn't look old enough to buy alcohol, took her place to watch over me. And then they noticed that the baby's heart rate dropped dramatically, to below 50. I was newly high on the epidural, and everything seemed like a blur. The fill-in nurse kept asking me to move my position. I tried but I really couldn't move much. She looked a bit frantic. I wasn't sure how serious this was until I saw her hit a button and then there were about three, maybe four, doctors in the room. Niko's heart rate did not increase. I was covered in a thick fog of drug, pain and numbness. I felt like I was moving in slow motion and everyone around me was on double speed. Then I think one of the doctors shouted, "Get her into the operating room NOW!" High school fill-in nurse grabbed my bed and ripped me out of the room.
Let me stop here and mention that I was hooked up to IVs. I had a heart monitor attached to my right toe, and socks on my feet. The frantic fill-in nurse pushed my bed like she was on that old game show Supermarket Sweep, treating my bed like a shopping cart. She forgot to pull along my IV stand. So the IV tore out of my hand. The heart monitor ripped off my toe, pulling off my sock along with it. She then proceeded to run down the hallway slamming my knees into sharp corners and cabinets. I still have scars on my knees as battle wounds.
When the IV ripped out of the back of my hand, I started squirting blood everywhere. I left a trail of blood in the hallway. Psycho high school fill-in nurse finally noticed my bloody hand when we got to the operating room. She stared at my hand and then my face and then my hand and then my face. Her eyes began to grow out of her sockets. She looked back at my face and said, "Shit". Then looked back at my hand, "Shit!" Back to my face, "Shit! Shit! Shit! Shit!" Then louder, "SHIT! SHIT! SHIT!" I thought, "Damn it. I'm in the OR now. If there is someone here who can make this situation worse and result in me getting a c-section, it's this bitch." So I reached over and grabbed her with my bloody hand. I said as calmly as I could, "Calm down. I'm ok. Calm down. I'm fine. Get me another IV." That was, by the way, my only moment of clarity in the OR.
I looked around. There were about 7 or 8 doctors now. I wanted Kiril. He was not here. I asked for him. Idiot high school nurse told me that I could not think of my husband now, I had to think of the baby. What the hell was happening? With about seven faces looking at my vagina, I was asked to push immediately. I wanted my husband. I tried to push. I didn't feel anything between my legs.
Suddenly Kiril appeared in the room, dressed like a bee keeper, or a hip hop background dancer. He was covered from head to toe in a white zip up suit. He even had on a white head cap. With Kiril in the OR, I felt more ready to push. I gave a few good pushes but didn't make any progress.
I kept looking at my feet. The left foot was covered with a blue hospital non slip sock. The right foot was naked because the over zealous intern nurse violently ripped me from my room and my right sock flew off along with the heart monitor that was once attached to my right toe. I don't know why, but this detail just made the whole situation so wrong. I was not supposed to be in the OR. My baby's heart rate was not supposed to drop below 50. My substitute nurse was not supposed to scream "SHIT" repeatedly to my face. Kiril was not supposed to greet our baby wearing a space suit. And I was NOT SUPPOSED TO HAVE ONE SOCK ON!!!
I was just about to ask one of the 7 or 8 doctors to pluck the left sock off when one of them instructed me to push the baby out immediately or else! And I supposed that "or else" meant cesarean. The baby's heart rate climbed back up to a safe zone and they were giving me the opportunity to push, so I closed my eyes, ignored the sock, ignored the cursing young nurse, ignored my bloody hand, ignored the steady droning noise that was in the OR and pushed for my life, for my baby's life.
And then within 30 - 40 minutes, at 9:55am, a tiny blond baby was handed to me. Someone said with a shaky voice, "I think it's a girl." That voice must have belonged to Kiril. Who else would be shaky? A girl? A blond? I was so happy that she was a girl. I kept saying, "I'm so happy she's a girl. I'm so happy she's a girl. I'm so happy she's a girl. She's blond?"
Eventually we made it to the recovery room. The main delivering doctor came to visit, just to check in on us. By then, we were able to breathe and think a little clearer. Kiril was proud that he didn't have a heart attack. We asked the doctor why the baby's heart rate dropped so low. He said that he wasn't quite sure. Perhaps the cord wrapped around her neck briefly (it was not the case when she was delivered) or perhaps her shoulders were too squished as she moved through the birth canal. Whatever the reason, when a baby's heart rate drops below 50, it's a sign that the baby is dying. Jesus Christ. I was so glad they didn't mention this little detail as crazy nurse shoved me into walls, had me bleeding all over the place, and then threw me on to the operating table. I think that detail would have upset me a bit more than the sock situation.
Ok, birth story is told. Another long post. I'll describe the initial observations of Niko and recent tests in following posts.
The birth story was a traumatic one.
Kiril and I ate dinner at Chez Panisse on Friday, the night before. Earlier that day I dropped Mila off at my mom's to spend the night so that Kiril and I can eat our "last supper". I wasn't certain but I felt that I might go into labor that weekend, Sunday was my guess. I had been feeling braxton hicks contractions throughout my third trimester. But they were getting more frequent, maybe a few contractions every hour without a consistent rhythm. During dinner, they were coming on stronger, even somewhat painful. But it didn't stop me from enjoying my meal. It was Chez Panisse for Christ's sake! Kiril asked me to promise that I would not go into labor that night so that he could have 2 glasses of wine and eat heartily. I told myself not to pig out with the possibility of labor looming over me, but what the hell! It was delicious and I didn't regret it.
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| I had Nettles Pizetta as my appetizer. |
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| Asparagus main (this was the end of season for asparagus). |
 |
| In the British education, they always stress the three Rs - Reading, Writing and Arithmetic (though it seems that the English should have considered spelling a first priority. Three Rs?) This is a Chez Panisse poster, Eating was added first. |
When I checked into the hospital at 4:45am, I felt like "the girl who cried contractions". They were so mild, I thought surely they would laugh and send me home. They checked me and told me I was 3cm dilated. They said that I had the option to go home, but they did an ultrasound and saw that my bag of waters was low. So they gave me a room and if I needed a boost, they would induce me.
They administered the antibiotic at around 6am. The nurse said if I didn't deliver by 10am, they would give me another dose. I thought Ha! 10am? She's on crack. I took over 30 hours to deliver Mila and those contractions were off the charts. How would it be possible to deliver in the next 4 hours? All seemed fine for a while. In fact the contractions were backing down, and were more than 5 minutes apart. Until suddenly they just knocked me over. They went from easy breezy to full on collision with a semi-truck. They were unlike anything I've ever felt with the first delivery. I asked first for the drip (I forget what that's called at the moment)…. the drip through the IV. It was delicious. I was deliriously high from that for about 4 minutes until the next contraction. It felt as if the hand of an invisible giant was throwing me across the room, to and fro. The pain was all consuming and unbearable. I asked for the epidural, not knowing if I can survive the next contraction. The anesthesiologist stabbed me with the giant needle and it was in, though the drug was only active on one side of my body. They checked me again after the insertion and I was 10 cm dilated, fully effaced, baby's head was down. Luckily I asked for the epidural at that time because if they had checked me first I'm sure they would have denied me the epidural because it was too late.
My nurse actually took a break at this time. A fill-in nurse, who didn't look old enough to buy alcohol, took her place to watch over me. And then they noticed that the baby's heart rate dropped dramatically, to below 50. I was newly high on the epidural, and everything seemed like a blur. The fill-in nurse kept asking me to move my position. I tried but I really couldn't move much. She looked a bit frantic. I wasn't sure how serious this was until I saw her hit a button and then there were about three, maybe four, doctors in the room. Niko's heart rate did not increase. I was covered in a thick fog of drug, pain and numbness. I felt like I was moving in slow motion and everyone around me was on double speed. Then I think one of the doctors shouted, "Get her into the operating room NOW!" High school fill-in nurse grabbed my bed and ripped me out of the room.
Let me stop here and mention that I was hooked up to IVs. I had a heart monitor attached to my right toe, and socks on my feet. The frantic fill-in nurse pushed my bed like she was on that old game show Supermarket Sweep, treating my bed like a shopping cart. She forgot to pull along my IV stand. So the IV tore out of my hand. The heart monitor ripped off my toe, pulling off my sock along with it. She then proceeded to run down the hallway slamming my knees into sharp corners and cabinets. I still have scars on my knees as battle wounds.
When the IV ripped out of the back of my hand, I started squirting blood everywhere. I left a trail of blood in the hallway. Psycho high school fill-in nurse finally noticed my bloody hand when we got to the operating room. She stared at my hand and then my face and then my hand and then my face. Her eyes began to grow out of her sockets. She looked back at my face and said, "Shit". Then looked back at my hand, "Shit!" Back to my face, "Shit! Shit! Shit! Shit!" Then louder, "SHIT! SHIT! SHIT!" I thought, "Damn it. I'm in the OR now. If there is someone here who can make this situation worse and result in me getting a c-section, it's this bitch." So I reached over and grabbed her with my bloody hand. I said as calmly as I could, "Calm down. I'm ok. Calm down. I'm fine. Get me another IV." That was, by the way, my only moment of clarity in the OR.
I looked around. There were about 7 or 8 doctors now. I wanted Kiril. He was not here. I asked for him. Idiot high school nurse told me that I could not think of my husband now, I had to think of the baby. What the hell was happening? With about seven faces looking at my vagina, I was asked to push immediately. I wanted my husband. I tried to push. I didn't feel anything between my legs.
Suddenly Kiril appeared in the room, dressed like a bee keeper, or a hip hop background dancer. He was covered from head to toe in a white zip up suit. He even had on a white head cap. With Kiril in the OR, I felt more ready to push. I gave a few good pushes but didn't make any progress.
I kept looking at my feet. The left foot was covered with a blue hospital non slip sock. The right foot was naked because the over zealous intern nurse violently ripped me from my room and my right sock flew off along with the heart monitor that was once attached to my right toe. I don't know why, but this detail just made the whole situation so wrong. I was not supposed to be in the OR. My baby's heart rate was not supposed to drop below 50. My substitute nurse was not supposed to scream "SHIT" repeatedly to my face. Kiril was not supposed to greet our baby wearing a space suit. And I was NOT SUPPOSED TO HAVE ONE SOCK ON!!!
I was just about to ask one of the 7 or 8 doctors to pluck the left sock off when one of them instructed me to push the baby out immediately or else! And I supposed that "or else" meant cesarean. The baby's heart rate climbed back up to a safe zone and they were giving me the opportunity to push, so I closed my eyes, ignored the sock, ignored the cursing young nurse, ignored my bloody hand, ignored the steady droning noise that was in the OR and pushed for my life, for my baby's life.
And then within 30 - 40 minutes, at 9:55am, a tiny blond baby was handed to me. Someone said with a shaky voice, "I think it's a girl." That voice must have belonged to Kiril. Who else would be shaky? A girl? A blond? I was so happy that she was a girl. I kept saying, "I'm so happy she's a girl. I'm so happy she's a girl. I'm so happy she's a girl. She's blond?"
Eventually we made it to the recovery room. The main delivering doctor came to visit, just to check in on us. By then, we were able to breathe and think a little clearer. Kiril was proud that he didn't have a heart attack. We asked the doctor why the baby's heart rate dropped so low. He said that he wasn't quite sure. Perhaps the cord wrapped around her neck briefly (it was not the case when she was delivered) or perhaps her shoulders were too squished as she moved through the birth canal. Whatever the reason, when a baby's heart rate drops below 50, it's a sign that the baby is dying. Jesus Christ. I was so glad they didn't mention this little detail as crazy nurse shoved me into walls, had me bleeding all over the place, and then threw me on to the operating table. I think that detail would have upset me a bit more than the sock situation.
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| A few hours old |
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| Kiril and Niko |
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| We debated between Nikola and Nikolena for a long while. Nikola won. |
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| First kiss from sister Mila |
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| Proud sister |
Monday, August 6, 2012
The numbers game
I had so many ultrasounds during this pregnancy. They were mostly focused on the isolated shortened femur bones in the beginning. Then in the third trimester, they were concerned with her over all weight. She was always hovering just below or above the 10th percentile. Any weight below the 10th percentile is categorized as intrauterine growth restriction (IUGR). A baby who is IUGR needs to be delivered early because it's a sign that the baby is not getting sufficient nutrients in the womb and would be safer outside the mother.
Niko was around the 10th percentile until my 34th week, when I was assigned to have an ultrasound screening at the main hospital, rather than the high risk clinic where I usually went. And I was only scheduled at the main hospital by chance. The clinic was fully booked that day so they moved me to the hospital. At the hospital, they measured Niko at below the 3rd percentile in weight and the technician noticed that her chest was very small. The hospital technician looked at me with a worried look and asked, "Do you know that your baby is small? Let me call your doctor because of your…… your condition." I hated that woman at that moment. My condition? What the hell was my condition? I was carrying a small baby. I knew that. I'm a grown up. I wouldn't have blindly gone for an ultrasound every two weeks without noticing that "my condition" was alarming.
So I went back to my regular clinic at 36 weeks for another ultrasound. Before the ultrasound my doctor told me that we were looking at 3 different variations of how to complete this pregnancy.
1) If the weight is below 10th percentile, we schedule an induction the next day and deliver the baby.
2) If the weight is right above 10th percentile (like 11th to 15th), we induce at 37 week.
3) If the weight jumps up dramatically (to about 25th percentile), then I would be able to carry the baby until I go into labor naturally.
But he mentioned that third outcome was very unlikely so I should plan on meeting my baby the following day or the following week.
But what do you know, we had the ultrasound and the baby measured at 26th percentile in weight. They said that the chest wasn't small at all. (Whew! That meant that the dumb hospital technician was wrong.) The doctors and technician were congratulating me and trying to make me feel like I've dodged a bullet. But I was nervous about these numbers. What if they were totally off? I hated that it was all a numbers game.
10: induce immediately
15: next week
above 25: You're totally cool!
I mentioned this to my doctor. The baby was always checking in around 10th percentile. How can she jump to 26th percentile? And he said rather casually, well maybe one of the previous readings was inaccurate. He then cancelled all of my future NST (non stress tests) that were scheduled twice a week and basically said, "see you when you deliver".
10: induce immediately
15: next week
above 25: You're totally cool!
I mentioned this to my doctor. The baby was always checking in around 10th percentile. How can she jump to 26th percentile? And he said rather casually, well maybe one of the previous readings was inaccurate. He then cancelled all of my future NST (non stress tests) that were scheduled twice a week and basically said, "see you when you deliver".
I asked again about the whole skeletal dysplasia threat and he said (I'm paraphrasing), "We can't do anything about that now. You just have to wait and see. I honestly believe you have nothing to worry about. Maybe your baby will just be on the shorter side. You're not even high risk anymore." Insert awkward nerdy chuckle.
Of course that is what I wanted to hear but I should have been more pushy. I should have asked them to do the ultrasound again and requested a different technician. The 26th percentile was so far off from our previous readings and so unbelievable. And of course, hind sight is 20/20. I went into labor naturally at 39 weeks. Niko was born at below the 1st percentile, which is totally IUGR. She had zero subcutaneous fat on her body. And you know what, the hospital technician was right. Niko's chest was and still is small.
Sunday, August 5, 2012
First Post and long history of Nikola
I've decided to finally write down the crazy scrambled thoughts in my head. I think it'll do me some good. The past nine months or so have been stressful, scary, and life changing. In the midst of these unsettling months, I've also had good days.
I am now a mother of two girls. I was pretty certain that I wanted just one child. But in a moment of weakness (when I saw my first daughter, then the only child, search for Easter eggs all by herself with about nine adults following closely behind her) I felt a strange sadness for her. I worried that it would always be that way for her - an only child with too many adults standing over her. I worried that she would never learn the things that only siblings can teach you.
I grew up with a brother three years older than me. And though he was not always kind, never played well with me and had a habit of farting in my face, I was always thankful to have an older brother. Growing up I always had someone to follow around, someone to annoy, someone to pick on me and teach me all the curse words, someone who dared me to shove marbles up my nose which then resulted in extractions in the ER. Family vacations were always fun. He looked after me during my young years. I was never alone.
So that moment of weakness caused me to reconsider. And I eventually suggested to my husband that we forgo any kind of protection until my 35th birthday. If it didn't happen by my 35th birthday, then it wasn't meant to be. I made the suggestion in June and my birthday was in August. I believe our second daughter was conceived around August 10th.
I gained a lot of weight with this pregnancy, about 65 pounds. With my first, I gained 35 pounds. Everyone who saw me (even strangers on the streets) all concluded that "Damn! Your baby is going to be HUGE!" Though that was far from the truth. About 5 of those pounds were her and the rest was glorious fat me.
The second pregnancy was so different from my first. With my first, I didn't even know I was pregnant for the first three months as my periods were always irregular. So missing my period for three months was not alarming. I never felt sick. I didn't feel tired. I didn't have strange cravings. In fact, I mostly forgot I was pregnant until I started to show and experienced kicks. With my second pregnancy, I had morning sickness for four months. I started to feel pelvic pain very early on. And I had braxton hicks (sometimes quite painful) pretty early on.
But the biggest difference was the test results. When I was pregnant with Mila, I was 32 years old. The results from the nuchal translucency test came back as good as they get. The nurse told me that I tested better than an 18 year old. And Milana (we call her Mila) was born without any complications. She was a healthy baby girl, born at 41 weeks, 7lbs 14oz, 21 inches long.
While pregnant with Nikola, the nuchal translucency screening (around my 13th week) showed that I had a 1 out of 57 chance of having a baby with trisomy 18. The cutoff for a positive result is 1 out of 50 in California. So they gave me a negative test result. But it was too close for my taste. I then read that in New York the cut off is 1 out of 100. So if I had taken this test in New York, they would have given me a positive result for Trisomy 18. I don't want to go into Trisomy 18, but it's not pleasant and babies born with this defect have very little chance of surviving the first week. We weighed the risks associated with having a CVS, but I couldn't stomach these results without knowing for sure. So I got a CVS done (which hurt like a bitch by the way). The result was negative for trisomy 18 and also negative for down syndrome. That was a huge relief. They did mention to me that my PapA level was low and that it may affect the growth of the fetus later on in the pregnancy so we would have to monitor that closer as I got to my third trimester.
Then with my 15 week anatomy ultrasound, they noticed that the baby's femur bones were short, measuring at about 3 weeks behind. They said that is usually a sign of down syndrome, but since we know that the baby doesn't have that, the other direction is skeletal displaysia. But of course the baby could be normal also, but they just wanted us to have all the information. I couldn't believe my ears. More to worry about. We were told that there are over 200 variations of skeletal dyplaysia. About half of them are lethal. And among the non-lethal, achondroplasia is the most common. They offered to perform an amnio to test for achondroplasia. They couldn't test for every variation as there are too many so they wanted to rule out the most common. I was a mess. I didn't realize that pregnancies could be so complicated. I completely took my easy carefree first pregnancy for granted. I didn't want to have an amnio after the CVS. I was doubling-down on my risk of miscarriage. But I needed some answers. So we went for it and we were negative for achondroplasia.
We went back for many ultrasounds after that, one ultrasound every other week. The baby was under weight, teetering around 10th percentile. I also had to have a nonstress test twice a week where they hooked a monitor around my belly to check on the baby's heart rate. I was at the hospital so often, I thought that I should have had a special reserved parking spot marked with my name. The femur bones remained short, less than the 2nd percentile. Though we ruled out achondroplasia, we still had so many other forms of skeletal dyplaysia to worry about. The many doctors we met in the high risk department all said that they couldn't give us any real answers. They didn't think that the baby has skeletal dysplasia but they also couldn't rule it out. I was so uneasy about the unknown that we sought a specialist outside our kaiser system and met a doctor at UCSF. He claimed that he was the most knowledgeable on skeletal dyplasia west of the Mississippi. He did an ultrasound and his answers were similar to that of the high risk team at kaiser. He agreed that he could not rule out skeletal dysplasia. But based on his extensive experience, he was inclined to say that our baby does not have SD.
Well fast forward to the end of my pregnancy, a very quick but painful labor, a traumatic labor experience when our baby's heart rate dropped below the 50s, a mad dash to the operating room where I dodged a c-section by the skin of my teeth, Nikola was born. She was 39 weeks, weighed 5lbs 5oz, on May 5th and was 19.5 inches long. I call her Niko.
We didn't know the sex and I was SOOOOO relieved that she is a girl. I really love the idea of two girls. I dig the idea of a relationship between sisters. And also I thought if this baby does have something… some form of SD, I want her to be a girl. Somehow I think that short women can adjust better in life than short men.
I will stop now as this post is super long. I'll explain my observations about Niko's appearance and our conversations with our doctors so far in following posts.
I am now a mother of two girls. I was pretty certain that I wanted just one child. But in a moment of weakness (when I saw my first daughter, then the only child, search for Easter eggs all by herself with about nine adults following closely behind her) I felt a strange sadness for her. I worried that it would always be that way for her - an only child with too many adults standing over her. I worried that she would never learn the things that only siblings can teach you.
I grew up with a brother three years older than me. And though he was not always kind, never played well with me and had a habit of farting in my face, I was always thankful to have an older brother. Growing up I always had someone to follow around, someone to annoy, someone to pick on me and teach me all the curse words, someone who dared me to shove marbles up my nose which then resulted in extractions in the ER. Family vacations were always fun. He looked after me during my young years. I was never alone.
So that moment of weakness caused me to reconsider. And I eventually suggested to my husband that we forgo any kind of protection until my 35th birthday. If it didn't happen by my 35th birthday, then it wasn't meant to be. I made the suggestion in June and my birthday was in August. I believe our second daughter was conceived around August 10th.
I gained a lot of weight with this pregnancy, about 65 pounds. With my first, I gained 35 pounds. Everyone who saw me (even strangers on the streets) all concluded that "Damn! Your baby is going to be HUGE!" Though that was far from the truth. About 5 of those pounds were her and the rest was glorious fat me.
The second pregnancy was so different from my first. With my first, I didn't even know I was pregnant for the first three months as my periods were always irregular. So missing my period for three months was not alarming. I never felt sick. I didn't feel tired. I didn't have strange cravings. In fact, I mostly forgot I was pregnant until I started to show and experienced kicks. With my second pregnancy, I had morning sickness for four months. I started to feel pelvic pain very early on. And I had braxton hicks (sometimes quite painful) pretty early on.
But the biggest difference was the test results. When I was pregnant with Mila, I was 32 years old. The results from the nuchal translucency test came back as good as they get. The nurse told me that I tested better than an 18 year old. And Milana (we call her Mila) was born without any complications. She was a healthy baby girl, born at 41 weeks, 7lbs 14oz, 21 inches long.
While pregnant with Nikola, the nuchal translucency screening (around my 13th week) showed that I had a 1 out of 57 chance of having a baby with trisomy 18. The cutoff for a positive result is 1 out of 50 in California. So they gave me a negative test result. But it was too close for my taste. I then read that in New York the cut off is 1 out of 100. So if I had taken this test in New York, they would have given me a positive result for Trisomy 18. I don't want to go into Trisomy 18, but it's not pleasant and babies born with this defect have very little chance of surviving the first week. We weighed the risks associated with having a CVS, but I couldn't stomach these results without knowing for sure. So I got a CVS done (which hurt like a bitch by the way). The result was negative for trisomy 18 and also negative for down syndrome. That was a huge relief. They did mention to me that my PapA level was low and that it may affect the growth of the fetus later on in the pregnancy so we would have to monitor that closer as I got to my third trimester.
Then with my 15 week anatomy ultrasound, they noticed that the baby's femur bones were short, measuring at about 3 weeks behind. They said that is usually a sign of down syndrome, but since we know that the baby doesn't have that, the other direction is skeletal displaysia. But of course the baby could be normal also, but they just wanted us to have all the information. I couldn't believe my ears. More to worry about. We were told that there are over 200 variations of skeletal dyplaysia. About half of them are lethal. And among the non-lethal, achondroplasia is the most common. They offered to perform an amnio to test for achondroplasia. They couldn't test for every variation as there are too many so they wanted to rule out the most common. I was a mess. I didn't realize that pregnancies could be so complicated. I completely took my easy carefree first pregnancy for granted. I didn't want to have an amnio after the CVS. I was doubling-down on my risk of miscarriage. But I needed some answers. So we went for it and we were negative for achondroplasia.
We went back for many ultrasounds after that, one ultrasound every other week. The baby was under weight, teetering around 10th percentile. I also had to have a nonstress test twice a week where they hooked a monitor around my belly to check on the baby's heart rate. I was at the hospital so often, I thought that I should have had a special reserved parking spot marked with my name. The femur bones remained short, less than the 2nd percentile. Though we ruled out achondroplasia, we still had so many other forms of skeletal dyplaysia to worry about. The many doctors we met in the high risk department all said that they couldn't give us any real answers. They didn't think that the baby has skeletal dysplasia but they also couldn't rule it out. I was so uneasy about the unknown that we sought a specialist outside our kaiser system and met a doctor at UCSF. He claimed that he was the most knowledgeable on skeletal dyplasia west of the Mississippi. He did an ultrasound and his answers were similar to that of the high risk team at kaiser. He agreed that he could not rule out skeletal dysplasia. But based on his extensive experience, he was inclined to say that our baby does not have SD.
Well fast forward to the end of my pregnancy, a very quick but painful labor, a traumatic labor experience when our baby's heart rate dropped below the 50s, a mad dash to the operating room where I dodged a c-section by the skin of my teeth, Nikola was born. She was 39 weeks, weighed 5lbs 5oz, on May 5th and was 19.5 inches long. I call her Niko.
We didn't know the sex and I was SOOOOO relieved that she is a girl. I really love the idea of two girls. I dig the idea of a relationship between sisters. And also I thought if this baby does have something… some form of SD, I want her to be a girl. Somehow I think that short women can adjust better in life than short men.
I will stop now as this post is super long. I'll explain my observations about Niko's appearance and our conversations with our doctors so far in following posts.
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