As a new parents of a sweet and beautiful baby, the last thing you want to hear is that your precious angel is genetically abnormal. I know what this means, there is no sugar coating it. It was the most difficult thing to swallow that I have ever heard in my life.
Furthermore, we still to this day 8+ months later have never actually met with a geneticist to discuss Elin's genetic situation and critical information such as her karyotype, how this may affect her physically, mentally, her lifespan, etc. So most of the information I have at this point is a result of independent research or discussion with other doctors, specialists, etc. who have offered insight
Apparently reaching a geneticist is an IMPOSSIBLE feat. No kidding, they have a 6--8 month wait minimum...if you are lucky. I am still so unnerved by this and frustrated. I cannot believe that a conversation so vital to the outcome of an entire being's life can be tabled for almost a year or more. In the meantime, milestones are slipping away and no one can explain it or tell you why. Not to mention, you browse the Internet for answers and clarity and you either find a lot of doomsday information and/or you realize your child is one of a handful of people in the world with their condition and the information is simply unavailable. This has been our experience.
It is certainly a tough road. I wouldn't wish this on anyone. However, through time I have learned to accept that Elin is who she was meant to be and she is all she knows. She doesn't know what could have been, or might have been. She only knows what is. SO we can choose to make "what is" a powerful, enjoyable, loving experience for her. Or, we can be upset and feel cheated and ultimately make her situation a negative (which doesn't alter the outcome anyway). We choose joy, we choose to trust, we choose to persevere. We choose to accept our child as she is as a beautiful and bright addition to our family. We choose to do everything within our power to maximize Elin's potential and give her every opportunity to enjoy the world around her for as long as possible.
So from what we see, Elin is still in good health. All her organs function appropriately, all her systems work appropriately. So we are hopeful that she will continue to have a healthy body.
As for finding answers to genetic questions, that will come very shortly we hope!
Friday, June 21, 2013
KEEP CALM and CARRY ON...it is only an extra chromosome!
So after we left the NICU, I remember being extremely impressed with the care we had received. The RCH NICU staff (and hospital staff in general) was extremely helpful, kind, and did everything they could to help us through this scary and uncertain experience. The reason she was sent to the NICU was because she had hypoglycemia (low blood sugar) and emesis (vomiting up formula they gave her). These issues were resolved very quickly with the help of an IV and never became a problem again. However, they still kept her in the NICU...why? Well a few things.
One disclaimer to begin with...when they tell you that lots of babies have extra digits at birth...they are right. When they tell you it is no big deal...they are right, sort of.
The truth is...it is a big deal if you are Caucasian. Apparently many African American babies are born with extra digits...something like 1/143 live births or something. It can also be common in other darker complexion ethnicities, but not as frequent as 1/143. These babies born with extra digits are typically perfectly healthy and its just some random biological occurrence that truly means nothing.
However, in a Caucasian baby like Elin, it is FAR less common and typically represents a major red flag to a genetic issue. More to come on that in a bit...
In the NICU it was determined that Elin had a healthy:
-Brain (nothing visible on the MRI)
-Liver
-Spine
-GI System
-Respiratory System
-Bones, skin, etc.
-Nervous system, reflexes, etc.
She was able to:
-Breastfeed
-Gain weight
-Swallow
-Sleep...some.
-Go to the bathroom
-Cry (although it was a bit raspy and weak)
There were a few things that were needing further exploration upon discharge:
-Her heart had a small hole and a misalignment of the right ventricle valve (don't quote me on this). We were told this was common in a baby born early and that it should resolve within a month. It DID! :)
-Her kidneys were slightly enlarged (hydronephrosis). They told us this too was common and she should outgrow it. She did! Thank heavens.
-She had a raspy stridor (floppy larynx). The cartilage was too soft. They told us she should also outgrow this. She did...pretty much. She still has a bit of a wheezy sounding breathing pattern. It is much better than it used to be. People used to look at me like my child was dying, they don't anymore. Ha!
-She had reflux disease. This was treated with medication, and she still hasn't completely outgrown it. It is common in babies who are born early and common in babies who have chromosomal issues. It doesn't and hasn't ever interfered with her ability to gain weight, etc. so we are thankful for that.
-She had failed her hearing test on her right ear...but on the fourth test she passed it. Yay!
-It was recommended that she have a repeat eye exam; it was confirmed that structurally her eyes are fine.
-Lastly, and most significantly, it was found through microarray genetic testing that Elin had a chromosome 9 abnormality. We were dumbfounded to learn this because I had had all the tests done during my pregnancy, I had had 5-7 various ultrasounds, and was never alerted to any problem or red flags that might exist with this baby. To make things even more confusing, the cause of her issue was because I had a balanced translocation on my 9th and 13th chromosome. this means there was a small piece of my 13th chromosome that switched places with a small piece of my 9th chromosome. This doesn't effect me because my chromosomes are balanced and so the right amount of genetic material is there. I will write more about this phenomenon later, but it was recommended that Elin (and of course us too) meet with a geneticist to better understand how this may effect her long term.
One disclaimer to begin with...when they tell you that lots of babies have extra digits at birth...they are right. When they tell you it is no big deal...they are right, sort of.
The truth is...it is a big deal if you are Caucasian. Apparently many African American babies are born with extra digits...something like 1/143 live births or something. It can also be common in other darker complexion ethnicities, but not as frequent as 1/143. These babies born with extra digits are typically perfectly healthy and its just some random biological occurrence that truly means nothing.
However, in a Caucasian baby like Elin, it is FAR less common and typically represents a major red flag to a genetic issue. More to come on that in a bit...
In the NICU it was determined that Elin had a healthy:
-Brain (nothing visible on the MRI)
-Liver
-Spine
-GI System
-Respiratory System
-Bones, skin, etc.
-Nervous system, reflexes, etc.
She was able to:
-Breastfeed
-Gain weight
-Swallow
-Sleep...some.
-Go to the bathroom
-Cry (although it was a bit raspy and weak)
There were a few things that were needing further exploration upon discharge:
-Her heart had a small hole and a misalignment of the right ventricle valve (don't quote me on this). We were told this was common in a baby born early and that it should resolve within a month. It DID! :)
-Her kidneys were slightly enlarged (hydronephrosis). They told us this too was common and she should outgrow it. She did! Thank heavens.
-She had a raspy stridor (floppy larynx). The cartilage was too soft. They told us she should also outgrow this. She did...pretty much. She still has a bit of a wheezy sounding breathing pattern. It is much better than it used to be. People used to look at me like my child was dying, they don't anymore. Ha!
-She had reflux disease. This was treated with medication, and she still hasn't completely outgrown it. It is common in babies who are born early and common in babies who have chromosomal issues. It doesn't and hasn't ever interfered with her ability to gain weight, etc. so we are thankful for that.
-She had failed her hearing test on her right ear...but on the fourth test she passed it. Yay!
-It was recommended that she have a repeat eye exam; it was confirmed that structurally her eyes are fine.
-Lastly, and most significantly, it was found through microarray genetic testing that Elin had a chromosome 9 abnormality. We were dumbfounded to learn this because I had had all the tests done during my pregnancy, I had had 5-7 various ultrasounds, and was never alerted to any problem or red flags that might exist with this baby. To make things even more confusing, the cause of her issue was because I had a balanced translocation on my 9th and 13th chromosome. this means there was a small piece of my 13th chromosome that switched places with a small piece of my 9th chromosome. This doesn't effect me because my chromosomes are balanced and so the right amount of genetic material is there. I will write more about this phenomenon later, but it was recommended that Elin (and of course us too) meet with a geneticist to better understand how this may effect her long term.
The NICU-our new home sweet home!
The following 6 days after Elin was born were spent in the NICU. It was really kind of a nice set up, if we are looking for positives here, because we were able to go home and sleep 8 hours in our bed then get up and go be with Elin all day. We didn't have to worry about her breathing or eating or odd movements or hiccups or all other little nothings that might send new parents into a tailspin because we had medical help around the clock. We would stay with her during the day (sometimes beginning at 5am with Erik before work and then later me around 8am), go get lunch, go get dinner, spend more time with her at night until 11pm or later and then go sleep soundly in our bed at home. I remember leaving the NICU a week later and one of my favorite nurses said "Have fun not sleeping!" on my way through the double doors out into the world ahead of us. I laughed and then thought, 'Wait, what?!'
Sleep we did not. We still don't. Sleep is not, has not, and may not ever be one of Elin's strengths. We know why now, but for the first five months...I thought I might die of exhaustion. I didn't.
Now, we have just accepted our sleepless way of life. We don't expect sleep...so when it happens we are always overjoyed.
The first few months of sleep looked something like this:
-Elin would take 20 minute cat naps a few times a day.
-Occasionally I could get 60-90 minute naps in if she was really tired or growing, etc.
-At nighttime, she would sleep 60-120 minutes and wake for food. Repeat until about 2 or 3am and then pretty much every 30-45mins from there on out she was awake and crying or hungry.
I can remember people telling me things like: "Don't you worry, once Elin is six weeks she will start sleeping!". That deadline came and went without any promise in sight. Then they would say, "Don't you worry, one she is 12 weeks she will start sleeping!" Not quite. Then I would hear things like "Don't worry! Once Elin is 10lbs, she will start sleeping better" Nope. Then my favorite, "Once you start feeding her rice cereal, she will sleep!" All these milestones came and passed and still, my child never slept. I realized that some babies don't sleep and that is that. They will sleep when they are developmentally ready and able. It isn't something you can force and I am glad I didn't. I now understand that Elin had good reason for not sleeping.
Sleep we did not. We still don't. Sleep is not, has not, and may not ever be one of Elin's strengths. We know why now, but for the first five months...I thought I might die of exhaustion. I didn't.
Now, we have just accepted our sleepless way of life. We don't expect sleep...so when it happens we are always overjoyed.
The first few months of sleep looked something like this:
-Elin would take 20 minute cat naps a few times a day.
-Occasionally I could get 60-90 minute naps in if she was really tired or growing, etc.
-At nighttime, she would sleep 60-120 minutes and wake for food. Repeat until about 2 or 3am and then pretty much every 30-45mins from there on out she was awake and crying or hungry.
I can remember people telling me things like: "Don't you worry, once Elin is six weeks she will start sleeping!". That deadline came and went without any promise in sight. Then they would say, "Don't you worry, one she is 12 weeks she will start sleeping!" Not quite. Then I would hear things like "Don't worry! Once Elin is 10lbs, she will start sleeping better" Nope. Then my favorite, "Once you start feeding her rice cereal, she will sleep!" All these milestones came and passed and still, my child never slept. I realized that some babies don't sleep and that is that. They will sleep when they are developmentally ready and able. It isn't something you can force and I am glad I didn't. I now understand that Elin had good reason for not sleeping.
Thursday, June 20, 2013
Early Concerns and the NICU
After Elin was born, I distinctly remember a specific moment which I will never forget. She was set down on the weigh station and her APGAR testing was being done. I remember looking over at her little hands raised in the air and thinking...'That is not right'. What I noticed was she had an unusual amount of fingers on each hand and it was so obvious to me that something wasn't right. Her APGAR scores were 8 and 9 respectively. I remember everyone in the room (doctor's, nurses, etc.) were somewhat tense looking at her and hearing her weak little cry. I remember being fearful because they all seemed so concerned. In spite of their obvious internal monologue, they assured us she looked great and that babies were born with extra digits all the time. They told us not to be worried, bundled her up and handed her over. That was that. We were ushered to recovery and our little baby was ours to keep...for a few hours.
I remember feeling very overwhelmed and uncertain about what had transpired following Elin's birth. I felt like something was off and yet here we were in recovery and all was as it should be...right? The day went on as you would expect. Family came to visit, Elin slept a lot, and I realized I didn't really have time to feed her or practice that whole lovely process enough. Finally around 4pm or so the family left and I had an opportunity to adjust to feeding, the baby, etc. However, Elin was just so sleepy. She didn't seem interested in eating. Finally around 6pm, the pediatrician came to take Elin to the nursery to do his evaluation. He returned to us and informed us that she would be needing to go to the NICU. She had a very low blood sugar and it wasn't improving. They were bottle feeding her with formula in the nursery in an attempt to get her blood sugar under control, but they couldn't. He was also concerned about some of her little "abnormalities". What abnormalities? Well the extra digits being the most obvious, but she also had a sacral dimple, a weak cry, some birthmark type patches of red at various points on her body/head/face that he felt all needed a little more investigation. We begged to keep her but he said no and we thank him for that decision to this day. Off to the NICU she went...and the mysteries begin to unravel.
I remember feeling very overwhelmed and uncertain about what had transpired following Elin's birth. I felt like something was off and yet here we were in recovery and all was as it should be...right? The day went on as you would expect. Family came to visit, Elin slept a lot, and I realized I didn't really have time to feed her or practice that whole lovely process enough. Finally around 4pm or so the family left and I had an opportunity to adjust to feeding, the baby, etc. However, Elin was just so sleepy. She didn't seem interested in eating. Finally around 6pm, the pediatrician came to take Elin to the nursery to do his evaluation. He returned to us and informed us that she would be needing to go to the NICU. She had a very low blood sugar and it wasn't improving. They were bottle feeding her with formula in the nursery in an attempt to get her blood sugar under control, but they couldn't. He was also concerned about some of her little "abnormalities". What abnormalities? Well the extra digits being the most obvious, but she also had a sacral dimple, a weak cry, some birthmark type patches of red at various points on her body/head/face that he felt all needed a little more investigation. We begged to keep her but he said no and we thank him for that decision to this day. Off to the NICU she went...and the mysteries begin to unravel.
Thursday, February 7, 2013
Pregnancy and Such... Part 2
Monday, October 8th.
This particular day it was hot and somewhat humid. We had been having this horribly uncharacteristic humidity off and on, and this week was worse than most. In addition, my wonderful husband had ripped the roof off our house and decided to replace it. As if the roof weren't "project" enough, we were also having our HVAC unit, the ducting and insulation ALL replaced. Eek.
The baby was still three plus weeks away so I wasn't too worried about the construction zone that was our house, but my husband saw the writing on the wall. He knew that baby was not staying put for long. I was in denial or something because I genuinely believed I would not be early...until this particular Monday rolled around. I went to my appointment and when they took my blood pressure, I was 168/110 or something ridiculously high (for me anyway). My doctor did another urine test. My protein had gone from "trace" amounts the week before to +2/3 (I think the scale is 0-4). The way my OB explained it is that once the protein is there, it increases exponentially. My wonderful OB decided he would put me on bed rest. However, since he knew I would never actually stay in bed at home, he decided to confine me to the hospital until he was ready to deliver the baby (he did not indicate when this would actually be).
At this point, I knew I would probably be having the baby early but the question was HOW early. Would it be tonight? Next week? Two weeks? etc. I didn't tell anyone (except my husband and sister) that I was in the hospital because I didn't want people worrying and I really didn't have any useful information to share at the time. According to my doctor, I was a "time bomb" (his words) and this has sort of an ominous, dismal connotation that I didn't think my family & friends would appreciate or understand. So Erik and I kept the information to ourselves and I spent the next two-ish days watching Law & Order SVU marathons and waiting for the time to tick by. Erik went to work as usual and I tried to run the world from a hospital bed...
My doctor continued to test my urine and blood pressure and it kept creeping in a dangerous direction. He decided he would induce me on Wednesday or Thursday of this week. Until then, I would sit and enjoy the remaining hours of "free time" I would have for the next many decades :)
Wednesday night rolled around and I was told by my OB that he was going to get the ball rolling that evening around 7pm. I was going to take a pill that would soften my cervix over the course of about 8 hours and then I would be formally induced the next morning (Pitocin, etc.). I took the pill and snuggled in for 8 hours sleep about 10:30pm after watching the first half of the season premiere of "Nashville". Around 11pm...I heard a loud pop and felt a gush of fluid (TMI, sorry!). My husband looked and confirmed that I hadn't just peed myself (as I thought I had). We informed the nurses and they informed my OB and their words to me were "Don't worry, induction takes forever and first babies take forever. You won't have her until 24 hours from now at a minimum." I'm thinking, okay-that's what I figured, I will go back to sleep. They gave me a small dose of Pitocin and sent me to dreamland. Sleep I did for about 15 minutes. It was not long before I began noticing some aggravating pain. That aggravation became total and complete agony within an hour. I labored pretty "hard" for lack of a more awkward term until about 4am. Finally, at four in the morning, after suffering contractions every 3-4 minutes and Camelback contractions at that, I begged for mercy. The gave me a smidge of morphine-which is like throwing a pebble at a freight train and expecting it to stop. It did nothing. So then they checked me around 5:30 and I was about 4cm. They told me I could have my epidural if I was ready. Erik and I had decided beforehand that I was going to attempt to get to 5cm before having an epidural and I really wanted to stick to that goal...but. I. Just. Could. Not. Take. It. Anymore. So I agreed to the epidural. The Anesthesiologist came in and gave me the juice before his shift change about 6am. by 6:15 I felt no pain. I was happy, elated even. I never felt more comfortable and relaxed. I just wanted to settle in for my nap since my delivery was still 18hrs away (per the nurses). I just dozed off and my OB came in to see me about 7:15am. He checked me...7cm! Yay. He told me he would go perform some surgeries and come back to deliver me around lunchtime. He was gone maybe 15 minutes when I had just dozed off again. Suddenly the nurse came and checked me in this frantic state. She said the baby's heart rate dropped and that indicated she had descended into the birth canal. She said I was 10cm. Just like that! Holy moly. I couldn't believe it. She told me to just sit and wait because they had no doctor to deliver me-so she would have to call in the on-call doctor! About 8:20 or so, a doctor finally arrived and I began to push. After some pushing and a bit of suction, Elin was delivered by the on-call physician at 9am. She was 6lb15oz. Not bad for being three weeks early! All in all, it was an easy and smooth experience. I couldn't believe I had done it, and it wasn't bad at all.
This particular day it was hot and somewhat humid. We had been having this horribly uncharacteristic humidity off and on, and this week was worse than most. In addition, my wonderful husband had ripped the roof off our house and decided to replace it. As if the roof weren't "project" enough, we were also having our HVAC unit, the ducting and insulation ALL replaced. Eek.
The baby was still three plus weeks away so I wasn't too worried about the construction zone that was our house, but my husband saw the writing on the wall. He knew that baby was not staying put for long. I was in denial or something because I genuinely believed I would not be early...until this particular Monday rolled around. I went to my appointment and when they took my blood pressure, I was 168/110 or something ridiculously high (for me anyway). My doctor did another urine test. My protein had gone from "trace" amounts the week before to +2/3 (I think the scale is 0-4). The way my OB explained it is that once the protein is there, it increases exponentially. My wonderful OB decided he would put me on bed rest. However, since he knew I would never actually stay in bed at home, he decided to confine me to the hospital until he was ready to deliver the baby (he did not indicate when this would actually be).
At this point, I knew I would probably be having the baby early but the question was HOW early. Would it be tonight? Next week? Two weeks? etc. I didn't tell anyone (except my husband and sister) that I was in the hospital because I didn't want people worrying and I really didn't have any useful information to share at the time. According to my doctor, I was a "time bomb" (his words) and this has sort of an ominous, dismal connotation that I didn't think my family & friends would appreciate or understand. So Erik and I kept the information to ourselves and I spent the next two-ish days watching Law & Order SVU marathons and waiting for the time to tick by. Erik went to work as usual and I tried to run the world from a hospital bed...
My doctor continued to test my urine and blood pressure and it kept creeping in a dangerous direction. He decided he would induce me on Wednesday or Thursday of this week. Until then, I would sit and enjoy the remaining hours of "free time" I would have for the next many decades :)
Wednesday night rolled around and I was told by my OB that he was going to get the ball rolling that evening around 7pm. I was going to take a pill that would soften my cervix over the course of about 8 hours and then I would be formally induced the next morning (Pitocin, etc.). I took the pill and snuggled in for 8 hours sleep about 10:30pm after watching the first half of the season premiere of "Nashville". Around 11pm...I heard a loud pop and felt a gush of fluid (TMI, sorry!). My husband looked and confirmed that I hadn't just peed myself (as I thought I had). We informed the nurses and they informed my OB and their words to me were "Don't worry, induction takes forever and first babies take forever. You won't have her until 24 hours from now at a minimum." I'm thinking, okay-that's what I figured, I will go back to sleep. They gave me a small dose of Pitocin and sent me to dreamland. Sleep I did for about 15 minutes. It was not long before I began noticing some aggravating pain. That aggravation became total and complete agony within an hour. I labored pretty "hard" for lack of a more awkward term until about 4am. Finally, at four in the morning, after suffering contractions every 3-4 minutes and Camelback contractions at that, I begged for mercy. The gave me a smidge of morphine-which is like throwing a pebble at a freight train and expecting it to stop. It did nothing. So then they checked me around 5:30 and I was about 4cm. They told me I could have my epidural if I was ready. Erik and I had decided beforehand that I was going to attempt to get to 5cm before having an epidural and I really wanted to stick to that goal...but. I. Just. Could. Not. Take. It. Anymore. So I agreed to the epidural. The Anesthesiologist came in and gave me the juice before his shift change about 6am. by 6:15 I felt no pain. I was happy, elated even. I never felt more comfortable and relaxed. I just wanted to settle in for my nap since my delivery was still 18hrs away (per the nurses). I just dozed off and my OB came in to see me about 7:15am. He checked me...7cm! Yay. He told me he would go perform some surgeries and come back to deliver me around lunchtime. He was gone maybe 15 minutes when I had just dozed off again. Suddenly the nurse came and checked me in this frantic state. She said the baby's heart rate dropped and that indicated she had descended into the birth canal. She said I was 10cm. Just like that! Holy moly. I couldn't believe it. She told me to just sit and wait because they had no doctor to deliver me-so she would have to call in the on-call doctor! About 8:20 or so, a doctor finally arrived and I began to push. After some pushing and a bit of suction, Elin was delivered by the on-call physician at 9am. She was 6lb15oz. Not bad for being three weeks early! All in all, it was an easy and smooth experience. I couldn't believe I had done it, and it wasn't bad at all.
Pregnancy and Such...Part 1
For those of you who do not know, my pregnancy was mildly eventful! I had a relatively standard 5 months of severe morning sickness. Once those days had passed, I thought the worst was over. In some ways...it was the worst and it was over! Nausea is a force to be reckoned with. It is overwhelmingly awful and unbearable. If you know me well, you know I am a throw up phob... so this + morning (disclaimer: ALL DAY) sickness is a problem.
Around month 6, I ended up in labor & delivery having what I might have guessed was preterm labor. Instead it was just kidney stones...thank God. I never thought I would be so grateful for such an agonizingly painful experience, but alas...I was. When they sent me home with my little granular friends, I had no idea what to expect. What came to be was 6 days of bouts of pain and no pain. What I have come to understand about the kidneys is that they are attached to your ureter and when you put a stone into your ureter, it is painful because the stone is irregular shaped and doesn't typically fit in the narrow ureter very nicely. In addition, the ureter has three points in which it is extremely narrow and typically the stone hurts the most in those three areas. SO the first day of pain consisted of 5 hours of agonizing discomfort. Its not so much pain, it is discomfort like you would not believe. You cannot sit still, you cannot lay down, you cannot talk, you cannot think. I would just pace around the house and suck down Tylenol with codeine which is REAL effective (not so much). Then as soon as the horrific pain comes on, it is gone and you think you are free. Until about 48 hours later when the stone gets caught in the second narrowing and you are dying again for 5 hours. Break. Repeat.
Finally on the last cycle of biting pain, it broke free and I peed it out about an hour later. The pain was gone, I felt like a survivor. My stone was approximately 5mm. This makes me a champion in the kidney stone world. The end.
Months 6ish-7ish were great. No sickness, no kidney stones, I was still relatively small (belly) and I was feeling good. I went back to work in the fall and was trucking along toward my due date nicely, when suddenly...the swelling began. Yikes. This wasn't pretty. Overnight practically, I had Miss Piggy's legs and face and it continued to worsen over the next few weeks. By the end of what I call "the great swelling", I was unable to fit in any type of shoe or sandal. I had to wear size 9.5 slippers or be barefoot. One other thing, my blood pressure was SKY high. It kept slowly ticking up, up and up. I did not have any protein in my urine at my OB appointments so as far as the medical experts were concerned, I was just a fat, pregnant woman! Eventually (around October 1, 2012) my blood pressure got high enough that my OBGYN didn't feel comfortable with me returning to work. I fought him, tooth and nail. He won and I stayed home...sort of. I spent some time running errands and working around the house. Finally, Monday-October 8th rolled around and I went for what would be my final OB appointment.
Part 2-Next Post
Around month 6, I ended up in labor & delivery having what I might have guessed was preterm labor. Instead it was just kidney stones...thank God. I never thought I would be so grateful for such an agonizingly painful experience, but alas...I was. When they sent me home with my little granular friends, I had no idea what to expect. What came to be was 6 days of bouts of pain and no pain. What I have come to understand about the kidneys is that they are attached to your ureter and when you put a stone into your ureter, it is painful because the stone is irregular shaped and doesn't typically fit in the narrow ureter very nicely. In addition, the ureter has three points in which it is extremely narrow and typically the stone hurts the most in those three areas. SO the first day of pain consisted of 5 hours of agonizing discomfort. Its not so much pain, it is discomfort like you would not believe. You cannot sit still, you cannot lay down, you cannot talk, you cannot think. I would just pace around the house and suck down Tylenol with codeine which is REAL effective (not so much). Then as soon as the horrific pain comes on, it is gone and you think you are free. Until about 48 hours later when the stone gets caught in the second narrowing and you are dying again for 5 hours. Break. Repeat.
Finally on the last cycle of biting pain, it broke free and I peed it out about an hour later. The pain was gone, I felt like a survivor. My stone was approximately 5mm. This makes me a champion in the kidney stone world. The end.
Months 6ish-7ish were great. No sickness, no kidney stones, I was still relatively small (belly) and I was feeling good. I went back to work in the fall and was trucking along toward my due date nicely, when suddenly...the swelling began. Yikes. This wasn't pretty. Overnight practically, I had Miss Piggy's legs and face and it continued to worsen over the next few weeks. By the end of what I call "the great swelling", I was unable to fit in any type of shoe or sandal. I had to wear size 9.5 slippers or be barefoot. One other thing, my blood pressure was SKY high. It kept slowly ticking up, up and up. I did not have any protein in my urine at my OB appointments so as far as the medical experts were concerned, I was just a fat, pregnant woman! Eventually (around October 1, 2012) my blood pressure got high enough that my OBGYN didn't feel comfortable with me returning to work. I fought him, tooth and nail. He won and I stayed home...sort of. I spent some time running errands and working around the house. Finally, Monday-October 8th rolled around and I went for what would be my final OB appointment.
Part 2-Next Post
Thursday, January 31, 2013
Our Own Holland
An Essay by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michaelanglo David. The gondola in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands, the stewardess comes in and says, "Welcome to Holland".
"HOLLAND?" you say "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
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