I've had social block. I compare it to writers block. I just stepped out of my social life for a while. I'm trying to come back. School is starting soon. I've volunteered at my old job a bit. It was nice to see everyone. I've started training for my new job. I took on some volunteer jobs. So I'm keeping myself busy. I like it that way.
Two of my friends have had baby boys. I met the first one last week. He was just so precious. I go tomorrow to meet Mustafa. I am very excited. I really like to be around small babies but they make me nervous at the same time. It's been a while since I've cared for a tiny baby.
I'm eating and sleeping again. Sleeping less but still sleeping and with less aide. i'm looking forward to the future. InshAllah next summer I will try to get pregnant again. I honestly can't wait. The other day a cashier at Wal-Mart asked me if Ali was my only one and I said yes. I instantly regretted not acknowledging my two other sons, Yahya and Kamil.
Kamil's head stone has been ordered and is on the way. I'll post a pick once it's there. Ramadan begins in 3 days. I need it. I need the spiritual refresher that Ramadan brings. I need the community and I need Allah's forgiveness and Mercy.
I have finally enabled comments on my blog. I don't know what I was doing wrong before but whatever it's fixed now.
Saturday, August 7, 2010
I've had social block. I compare it to writers block. I just stepped out of my social life for a while. I'm trying to come back. School is starting soon. I've volunteered at my old job a bit. It was nice to see everyone. I've started training for my new job. I took on some volunteer jobs. So I'm keeping myself busy. I like it that way.
Posted by beckabin at 7:22 PM
Thursday, June 17, 2010
Well things are going much better than the last post. I have been in school for three weeks and have one more week to complete two classes. One step at a time. My mood swings are better. I don't cry every day. I don't look at pictures every day. I went to a social event and actualy had fun. I had been avoiding everyone up until now. So life goes on.
Posted by beckabin at 7:39 PM
Thursday, May 27, 2010
The time has gone by so slowly and so quickly at the same time. I'm not ready. I'm not ready to speed ahead. School starts in less than one week and I have intense anxiety just thinking about it. Some ask why don't I quit or take a break but I ask and do what instead? Be depressed, be unproductive, just sit around the house? What else can I do but keep going and reach the goals we've set for our family. It's just hard and some days I feel crazy.
This week was hard. i've thought about the one month mark everyday like it means something. not really what's the difference one day or one month. Simo and I have fought several times about nothing. I'm just having a hard time adjusting.
Ali is doing so much better. Actually he is great hamdullah. I go back to Dr. Maarouf next Friday. I'm not looking forward to this. I don't want her to know how bad I'm actually doing. I don't know why but I don't but I can't hide it either.
Posted by beckabin at 7:13 AM
Wednesday, May 12, 2010
I read a grief book. My mom bought this book for me because she loves to read self help books. I always tease her about what a crock of crap this stuff is. The book told me a lot of what I already knew. I did learn two things from the book. I had experienced anticipatory grief and had moved through many of the stages of grieving before Kamil's birth. Denial, anger, insomnia, and depression are things I experienced and moved past during January, February, March, and part of April. I can look back now at a previous post in which I described coming out of depression and a fog and not realizing I was depressed. Well that was my grieving.
The other thing I learned was fear is also an emotion from grief. I have had a lot of fear in the past few weeks. Feelings of looking over my shoulder because I might get robbed or at a carnival I was totally uncomfortable and wanted to leave because I was scared. Of what? I don't know. I also freaked out in abad part of OKC. My mom needed some tylenol so we stopped at a Dollar General and there were two people hanging around that looked suspicious. I didn't want to get out of the car. I think this fear is coming from a sense of loss of control. Before a death you feel very in control of your life. Even my religious beliefs tell me I don't have control and I believe that but your psyche tricks you into thinking you have control.
Ali is very sick. Last night was the worst night. He coudn't swallow, breathe, or suck his thumb. He had a high fever and sweating. I was very scared. Not because he is sick but just of the creeping feeling that something could happen to him. I am not obsessing over it but the thought does sneak up on me. If something happened to Ali I don't know how me and Simo could survive.
I'm not used to these type of thoughts and feelings. I am always on top of things, organized, and confident. Now I can't remember things from one hour to the next. I have to depend on my mom and Simo to remind me. I have to make a list of things to be done for the week so I don't forget. I'm scared, nervous, and withdrawn. I'm not confident in my parenting methods, social interactions, and daily choices.
The grief I am experiencing now differs from the anticipatory grief I experienced after the diagnosis. Today we are going to the graveyard. This will be my first time to see the grave. I am hoping it will help bring more closure. I can understand how people who lose a spouse or parent can go on pretending they are there or don't move their things. it makes them feel complete. I could totally see myself pulling up a highchair to the table. It is Kamil's place. He is part of the family. He is just not here.
Posted by beckabin at 8:09 AM
Tuesday, May 11, 2010
Normally when you have a baby you are so caught up in the immediate needs of the baby you forget the pregnancy altogether. You are tired from feeding, changing diapers, and trying to manage a new normal you don't remeber the flutters in your stomach and the kicks in your ribs.
When you lose your baby you live with a ghost. Each day this ghost kicks my tummy. The ghost ripples through my belly. Other people might say they are incomplete or their is a hole in them. It's the same feeling. When milk drips from my body it's like my body crying for a baby.
I chose the name Kamil because it meant complete in Arabic. It seemed right at the time. The reality now is that our family is very incomplete. We are adjusting to a new normal. It's the best anyone can do. Life doesn't stop when your baby dies.
Posted by beckabin at 3:36 PM
Saturday, May 8, 2010
Posted by beckabin at 6:45 PM
Thursday, May 6, 2010
Three big things happened today: I realized Kamil died of asphyxiation, my husband told me thank you, a girl from one of my classes approached me about her daughter.
1. I know Kamil had several diagnoses but today something hit me and I had this mental image of his blue lips and white skin. It was very overwhelming. The shock of his death is starting to wear off and the fog of the medicine is clearing so more mental images are coming through, more memories, and more feelings. I physically shook my head trying to get it to go away. All I could do was say hamdullah and wait for the moment to pass.
2. Simo told me thank you today for preserving Kamil's memory. Those weren't his exact words. he said thnak goodness I have you. I asked what he meant. He told me taking the pictures and recording the heartbeat were things he would never have done. He said it wasn't real to him until he had Kamil dead in his arms. This was a rare moment in our relationship where we actually confided in each other about feelings. Kamil's death is bringing us closer. It's so unfortunate it took the death of our son to do this.
3. A girl from my Thursday night reading class approached me. She told me she had asked my professor for my email after she had annouced to the class that Kamil had passed away. She wanted to contact me b/c her daughter had passed away July 09. She was born prematurely at 24 weeks. She lived 2 weeks and 5 days. This connection sparked something inside me. Mom said it was me feeling that I am not alone. maybe. Anyway I told her to contact My Very Own Angel founder Stephanie Stewart. So... we will all have this support between each other.
I've wanted to write several times. There are so many feelings, thoughts, and emotions that aare fleeting in this time of grief. It's hard to catch it all and I want to remeber everything about this time with Kamil. I am doing the best I can.
Ali is struggling now. He has a stress blister on his lip and talks a lot about death. He asks many questions and yesterday he asked if we could have another baby. He wanted to know if I would get sick again and if the new baby would get sick. I was at a loss for words but managed to talk it out with him. My mom has been with me every minute. this has been a tremendous help. She is moving to Oklahoma to be closer to us and her other daughters.
We have received so many kind words and gestures in the past ten days. The outpour of generosity and genuine concern for our family is touching. This experience has changed my life and relationships with people around me forever. I can feel myself maturing. Old things have lost their importance. Kamil's life taught me about prioritizing. Maybe that was his purpose.
Posted by beckabin at 3:03 PM
Wednesday, April 28, 2010
Last Wednesday I started to feel pre labor signs. On Thursday I turned in my one week notice at work. Friday and Saturday were uneventful. Sunday the blood came. Monday I was still bleeding. I called my doctor and went in for a check up. I was dilated 1/2 cm. Kamil was fine. The ultrasound showed that his head had not grown with the rest of his body. So his femur/body measured 37 weeks and his head measured at 30 weeks. The umbilical cord was still low in the cervix. At 4 pm I had mild back contractions and was sent home to rest.
At 9pm I had mild stomach contractions. At 1opm the contractions were every 15 minutes lasting for 30 seconds each. By 11pm the contractions were every 5 minutes for 1 minute. At 12 I went to the hospital. I was dilated to 1/2 cm still. then I went to 3, 6, received the epidural, when it started to kick in I was dilated to 9.
At about 2:00 the umbilical cord came out before Kamil. He passed away at 2:30 in the birth canal due to cord compression cutting his oxygen supply during each contraction. He was born at 3:01 am on 4-27-2010. He was 5 lbs. 20 inches.
I was so scared to see him but after the first few minutes the shock wore off a little bit. I was able to spend time with him and actually enjoy holding him. My nurse and friend Pepper bathed him and dressed him for me. I slept a few hours with him.
My mother brought Ali to the hospital at 9am the next morning. We talked about Kamil being sick and how he had died. Ali wanted to see him. A few hours later Ali met Kamil. It was very sweet and Ali handled everything very maturely. I hope this was the right thing. I feel it was for our family. There were plenty of pictures. Barb the bereavement specialist at baptist-integris is a wonderful lady and made the whole experience very peaceful and minimized the stress. She provided great advice and information.
The Imam came and gave some uplifting words and put things into perspective. We arranged the burial for that afternoon. I made moldings of Kamil's hand and foot, took a locket of hair, and spent the last few hours hugging and kissing him. he was so sweet and soft. Poor little baby. Miskeen.
My in laws, family, friends, and coworkers visited. I really thought I wouldn't want anyone around but the opposite was true. I love and appreciate all the visits and support, text messages and voicemails, cards and flowers. At 3pm my husband picked Kamil up and met his brother at the mosque to go to Mercy Cemetery to bury Kamil. They dug the grave and buried the baby. I was discharged from the hospital at 4pm and was home by 5.
It all happened so fast but this is life. Death is a reminder of how short life is. A reminder to get yourself straight. A reminder to be ready for judgement day. Kamil is going to be a bird of paradise waiting for his parents to take them throught the gates inshAllah.
I am home now. We are doing fine. So many people are reaching out. It is really wonderful to have so much love in this time.
Posted by beckabin at 8:30 PM
Friday, April 2, 2010
Oh my how can I put this? It is April 2 so I think I've been out of it for the past three months. It's not until you can come out of depression a lil bit to realize you have been in it. I have been sooooo depressed. I have done nothing for three months! and I've felt horrible. I've wanted to go no where and see no one and do nothing. My son and my job have literally been my life force or I would have melted into my couch. With that said I am feeling better. I think my in laws coming had something to do with that. We had to get prepared for them to come and so I kicked it into high gear. Anyway they are here from Morocco. My father in law, Sister in law and husband, and their son Ghali my lil nephew. So there is more life in the house now which is good for my overall health.
This morning I am going to my maternity photo shoot. I have so many mixed feelings about doing this but I hear that I will appreciate it later. It is through this foundation called Now I Lay Me Down To Sleep. I read about it on another mom's blog (Shout Out Stephanie!) who went through the same thing with her son's pregnacy last March. So I hope this goes well.
On another note. Tuesday and Wednesday brought more difficult decisions. Both Dr. Stanley and Dr. Maarouf have told me the umbilical cord is below the Kamil's head and that could mean a c-section if it didn't move. So we have been waiting to see of the cord will move on it's own or not. Well I am almost 33 weeks and the cord has not moved. Kamil is actually not in the fetal position. He is bent straight in half with his feet over his head ready to come out. So the problen is that during labor and delivery the umbilical cord supplies the baby with his oxygen. If the cord stays where it is then it will get squished and cut off his oxygen before he is born. Basically he would die during birth. A C-section would skip all of this but both doctors do not want me to do a c-section. The risk for future preganacies and yada yada yada. So if you have a viable baby c-section is no problem but for the outcome I am waiting for there is no point to do a c-section. So I'm told. Everyone agrees with the dr.s but I am really hoping for those few minutes/seconds of life. I just don't know what I will do yet. Prayer first. Lots of prayer. Istakara for some resolve.
I'm also starting to think about Ali. He is so excited about the baby. I have to really think about how we are going to handle this with him. He's so young.
Posted by beckabin at 4:18 AM
Thursday, January 21, 2010
So I went on Monday for the chromosome test. I thought we would do another ultrasound but we didn't. Dr. Stanley told me there was no reason to continue sseign him as a specialist. He said I could go back to Dr. Maarouf. She has kindly agreed to deliver Kamil. This will be easier because Pepper my friend and nurse who delivered Yahya will be there. We'll be a baptist so we'll also have the same bereavement lady Barb.
I'm starting to get over the depression. At first I really didn't know how to keep going but I did. Now it's not so hard. I have to admit I feel like a walking dead person. I know I'm not going to die but part of me is. He is so strong right now though. He moves and kicks ALL the time. I don't remeber Ali moving this much. I think it's a reminder that he is still alive he's not gone yet.
I still haven't figured out how to answer the question " How are you doing?" I mean fine is the first thing that comes to my head but fine is not honest but then I don't want to keep crying everytime I turn the corner at work. I have received soo many responses from my Facebook thread. I really appreciate the emails. I have cried while reading so many of them. I really appreciate everyone's support and genuine care.
Posted by beckabin at 2:47 AM
Monday, January 18, 2010
On Thursday I went for another bladder tap. The bladder was full again. The test results came back from the amniocentesis. The results were negative for any chromosomal defects or abnormalities. So this was one step closer to the shunt procedure. The fluid taken on Thursday was to be tested for kidney function and electrolyte levels. The baby looks good.
Monday the test results were in for kidney function. Both kidney's are severly damaged and all the level readings were off by alot. So Kamil is not a candidate for the shunt procedure. There is nothing we can do but wait it out from here. I have another appointment today to check on Kamil and see how he is doing.
The Dr. did find something on Kamil's chromosome 2. Mary from the office said there was an inversion on chromo 2. It probaly means nothing and she said it was a very common thing found in chromosome testing and it is most likely unrelated to Kamil's condition but we are doing more testing to find out what exactly it could mean.
The due date is still May 22 all his measurements are on with the dates so that is a good sign b/c he is still growing and thriving... inside.
Posted by beckabin at 6:43 AM
Thursday, January 7, 2010
Fetal lower urinary tract obstruction (LUTO) is a rare condition that is caused by a blockage of fetal urination. Because the baby cannot empty the bladder, the baby’s bladder subsequently becomes very large and inflated. Also, because the amniotic fluid is essentially composed of the baby’s urine beyond the middle of the second trimester, the bag of waters dries up. A cascade of secondary effects result in significant morbidity and/or mortality for the baby. This includes problems to the urinary collection system (hydronephrosis) and kidneys (renal dysplasia) attributed to the backpressure from the urinary blockage. Underdevelopment of the lungs (pulmonary hypoplasia) develops from the lack of amniotic fluid during a critical time of the pregnancy.The cause of fetal LUTO is varied. The most common cause in male fetuses is posterior urethral valves (membrane blocks the flow of urine from the bladder). Oligohydramnios (low amniotic fluid volume defined as the maximum vertical pocket less that or equal to 2.0 centimeters) may then develop, and is associated with a worse prognosis. In females the most common cause is urethral atresia (a body orifice or passage in the body is abnormally closed or absent). Other causes of fetal LUTO include but are not limited to obstructive ureterocele (area between the tube that carries urine from the kidneys to the bladder), urethral stricture (abnormal narrowing of the urethra) or agenesis (absence of), persistent cloaca (a defect in which the rectum, vagina, and urinary tract are fused together into a single common channel), and megalourethra (congenital dilation of the urethra). The ultrasound findings of many of these conditions are similar, and it is often difficult to differentiate the cause of the urinary obstruction until after delivery.Because there are different causes of LUTO, the prognosis can be expected to be different depending on the individual diagnosis. However, a major component that dictates perinatal outcome is the secondary complications of the obstruction (renal dysplasia and pulmonary hypoplasia). To prevent these complications, several methods have been developed to bypass the blockage of urine while the baby is still in the womb, with the hope that the backpressure on the kidneys can be averted and the amniotic fluid volume may replenish to allow for more normal lung development.FrequencySignificant lower urinary tract obstruction can be found in 1 in 500 pregnancies.
Posted by beckabin at 4:53 PM
What are posterior urethral valves?
Posterior urethral valves(PUV), a congential condition that occurs only in boys, are excess flaps of tissue in the urethra, which is the tube that drains urine from the bladder to the outside of the body for elimination. See Urinary Tract Anatomy. This excess tissue can block or reverse the flow of urine and can affect all of the urinary tract organs including the urethra, bladder, ureters, and kidneys. The organs of the urinary tract become engorged with urine and swell, causing tissue and cell damage. The degree of urinary outflow obstruction will determine the severity of the urinary tract problems.
What causes PUV?
PUV are the most common cause of severe types of urinary tract obstruction in boys. It is thought to develop in the early stages of fetal development. The abnormality affects only male infants and occurs in about one in 8,000 births. Sometimes however, if it isn't severe, it is not detected during infancy. This disorder is usually sporadic (occurs by chance). However, some cases have been seen in twins and siblings, suggesting a possible genetic component.
What are the symptoms of PUV?
The syndrome may occur in varying degrees from mild to severe. The following are the most common symptoms of posterior urethral valves. However, each child may experience symptoms differently. Symptoms may include:
an enlarged bladder that may be detectable through the abdomen as a large mass
urinary tract infection, or UTI (usually uncommon in children younger than 5 years and unlikely in boys at any age, unless an obstruction is present)
weak urine stream
bedwetting or wetting pants after the child has been toilet-trained
poor weight gain
difficulty with urination
The symptoms of PUV may resemble other conditions or medical problems. Always consult your child's physician for a diagnosis.
How is PUV diagnosed?
The severity of the condition usually dictates when it is identified. In more severe cases, where blockage of urine is complete or almost complete, posterior urethral valves can be identified prenatally in the male fetus. Here, ultrasound findings include bladder distention, bilateral kidney and ureteral dilation, and sometimes, decreased amniotic fluid level (oligohydramnios). It can also be diagnosed in the newborn boy with a distended bladder, and urinary dribbling or urinary retention [Respiratory distress (breathing difficulties) may be present in those with severe obstruction.].
If the blockage was mild at birth, posterior urethral valves can have a gradual effect on the bladder and therefore go undetected for years until your older child has a urinary tract infection or has problems urinating. These problems include the symptoms noted above.
If your child has these symptoms, he should be referred to a pediatric urologic physician immediately for an ultrasound of the urinary tract. The diagnosis is made based on the characteristic appearance of the posterior urethra on an x-ray called a voiding cystourethrogram(VCUG) or by direct endoscopic visualization. A VCUG is a specific x-ray that examines the urinary tract. For this test, a catheter (hollow tube) is placed in the urethra (tube that drains urine from the bladder to the outside of the body) and the bladder is filled with a liquid dye. X-ray images will be taken as the bladder fills and empties. The images will show if there is any reverse flow of urine into the ureters and kidneys. Direct endoscopic visualization is a procedure whereby a miniature telescope is passed within the urethra during general anesthesia. VCUG may also show vesicoureteral reflux (backward flow of urine from the bladder to the ureter and/or kidney), which is present in approximately 50% of patients with posterior urethral valves at the time of diagnosis. Reflux often resolves spontaneously after correction of the obstruction (i.e. treatment of PUV)
Further evaluation is necessary to complete the work up of the patient with posterior urethral valves. Your child will likely undergo laboratory (blood and urine) testing, especially a baseline serum creatinine level, which provides a gross estimation of kidney function. This is essential for the initial evaluation and follow up care of boys with posterior urethral valves. Additional studies you and your child may encounter include; the intravenous pyelogram (IVP) which allows doctors to visualize and assess the kidney collecting system and ureteral (drainage system) anatomy. This test involves injection of a contrast agent that fills the urinary tract tract and helps the doctor to see the organs on an x-ray. A renal (kidney) scan(s) which provide very sensitive quantitative information regarding kidney function and drainage characteristics, may also be used.
Specific evaluation of bladder function (urodynamics) is also an important adjunct to the care of boys with posterior urethral valves. During urodynamic evaluation, the bladder storage and emptying functions are characterized. This allows for appropriate and optimal medical and, at times, surgical management of problems that can be associated with posterial urethral valves. These include: small bladder capacity, hyperactivity of the bladder muscle, stiffness (loss of compliance) of the bladder wall, and/or an inability of the bladder to contract or empty completely (atonic bladder).
How is PUV Treated?
How the doctor manages your child's posterior urethral valves depends on the severity and character of presenting symptoms. In severe cases, for instance, symptoms such as respiratory distress, sepsis and/or fluid and electrolyte abnormalities are treated emergently. A urethral catheter is placed for relief of urinary obstruction, most likely prior to definitive diagnosis in the severely ill newborn, or following a diagnostic VCUG in the patient with less severe symptoms.
After appropriate stabilization of the patient, the posterior urethral valves are either cut or resected during a minimally invasive procedure known as valve ablation. While the child is under general anesthesia, doctors use a small caliber endoscope, a tiny telescope about the size of a pen-filler, to look through the urethra and remove the valves. No incision is necessary. Rarely, a boy with severe manifestations of posterior urethral valves may require initial proximal urinary diversion (urinary drainage before the urine reaches the urethra) at the level of either the bladder, ureter(s) or kidney(s).
What is the long-term outlook for a child with posterior urethral valves?
Postoperative and long-term evaluation of patients with posterior urethral valves is mandatory. After stabilization of the patient in the immediate postoperative period, the doctor must consider and manage any long-term problems that posterior urethral valves may have caused or impacted before their removal. These problems potentially include vesicoureteral reflux, bladder dysfunction and/or renal function impairment.
Baseline and periodic (as needed) urodynamic study in all patients with posterior urethral valves is prudent. Appropriate therapy such as anticholinergic medication (to decrease bladder hyperactivity), clean intermittent catheterization (to empty an atonic bladder) and/or bladder augmentation (to increase bladder capacity) may be helpful for management of specific bladder dysfunction.
Manifestations and consequences of posterior urethral valves may persist after removal of the valves. At one end of the spectrum are boys who continue to experience mild symptoms of urinary incontinence, frequency, urgency, but a normal upper urinary tract (kidney and ureter). Simple valve ablation as an outpatient can often cure these symptoms. In severely affected urinary tracts with a dilated kidney(s) and/or ureter(s) which do not improve after valve ablation, extensive reconstructive surgery may be helpful in preventing renal deterioration. Unfortunately, in some cases where the impact on renal function was greatly compromised by the obstruction, chronic renal insufficiency or renal failure occurs despite early relief of the obstruction. Follow-up care is therefore of the utmost importance.
Comprehensive initial and prospective evaluation, coupled with appropriate, directed management and aggressive follow up of boys with posterior urethral valves is critically important for optimal outcome. The goal would be to identify initially, treat proactively, and evaluate systematically the response of specific upper and/or lower urinary tract abnormality(ies) due to posterior urethral valves. This approach potentially limits the harmful effects on bladder and renal function. This goal will best be accomplished by collaboration with specialists in nephrology and radiology.
Research is being conducted at Children's Hospital Boston to determine the effects of prophylactic medication for these bladders to reduce or prevent their stiffness. Other drug therapies are being investigated that alter the potential changes at the cellular molecular level that may occur in boys with posterior urethral valves.
Researchers are also looking into ways to apply tissue engineering techniques to treat children with posterior urethral valves, who may require reconstructive surgery of the urinary tract. Tissue engineering allows doctors to use the patient's own cells to grow new replacement tissue used to augment various parts of the urinary tract. For more information, link to Children's Hospital's Center for Genitourinary Tissue Engineering.
Posted by beckabin at 4:44 PM
So I know on Tuesday I told everyone I was going to find out the gender of the baby and then I disappeared for the rest of the week. Well the baby is a boy and he has some complications. Very simply the baby has received a fatal, terminal, not compatible with life diagnosis. Instead of explaining every fine detail to each person who asks I am posting it here and will refer people here for more information. My son, Kamil Sefraoui, has been diagnosed with a Lower Urinary Tract Obstruction or LUTO caused by a Posterior Urethral Valve or PUV. This is a rare condition affecting 1:10000 boys. This diagnosis by itself is not fatal however as you may read more about each diagnosis you will learn the blockage of urine also blocks the fluid from returning to the babies lungs and results in hypoplastic lungs. This means the babies lungs don't get to practice breathing in the womb during critical lung development.
So Kamil was found on Tuesday with no amniotic fluid around him, kidney damage in both kidneys due to the back up of urine, a grossly enlarged bladder, and thickness at the back of the neck. He was seen by Neonatologist Dr. Stanley the same day. The Dr. performed an amniocentesis test and bladder tap to 1. drain the excess fluid from the Kamil's bladder and 2. to take some liquid to test for birth defects or genetic problems. On Thursday I learned there were no birth defects such as down syndrome or chromes 13/18 or something like that. We did a second bladder tap and drained almost as much fluid as we did on Tuesday. This is a small positive sign that one of the kidneys is working. The negative test and working kidney are important because....
There is a fetal surgery the Dr. can perform to place a shunt in Kamil's bladder so he will have an outlet to release the fluid so it will stop building up in the bladder. There are certain parameters the baby has to meet to be eligible for the procedure. One the amniocentesis has to be negative for genetic defects and it was. Two one of the kidneys has to be functioning at a level that can maintain after birth. So I will find out on Monday if Kamil is a candidate for this procedure. Dr. Stanley and myself are both VERY aware that this will most likely not be the case. Even if he did hve the procedure it's extremely risky, the babies move so much that they either can't get the shunt in place or the baby kicks it out. The shunt does not resolve the hypoplastic lung or low amniotic fluid problem. So on the one hand his kidneys are failing and damaged and on the other hand his lungs are not getting to develop.
What this means.... I am preganant with a boy. My due date is May 22, 2010. I am going to have this baby even though I know he will die. I have the option to terminate/abort/kill my baby and I will not do it. The Dr.'s tell me there is not the slighest chance he will live but that's not up to me. After Kamil is born we will be provided comfort care in the hospital. He will not be put on life support or any machines. There will be no medication or drugs. After the birth it is gods will what will happen. So I will keep the updates on this blog for family, friends, and anyone else experiencing something similar.
As some of you may know this is not the first baby I will lose. This is my fourth pregnancy. My first pregnacy was fine I had a baby boy Ali in 2005. Two years later, 2007, I had to induce labor for my 20 week old son, Yahya Sefraoui, who died in utero and my body did not miscarry. I had a 12 hour labor with him and he is buried in Mercy Cemetery in Oklahoma City, OK. In June 2009 I became prganat again and lost that baby at 8 weeks. I became pregnant with Kamil in August 2009 and received his terminal diagnosis in January 2010. This may seem like a lot of loss to some but to me I see the blessings. I have a strong faith and my religion, Islam, gives me explanations for these losses and that is what I take comfort in. I also see the previous two losses have better prepared me for what is to come with Kamil's delivery. Please don't feel sorry or give me sympathy. I am happy, content, and strong. I do need support, friends, understanding, and an occasional shoulder to cry on. Keep in touch and check back to keep updated. With much love.