Tuesday, June 30, 2009

My husband...

I have been so consumed with my feelings that I feel like I have somewhat pushed my honey aside and I feel really bad about it. He has been working such long hours at work that we hardly see each other and when we finally do get to see each other it's all about me! How I am feeling, how tired I am, how sad I am and so on, what about him? I know his heart aches just like mine does, I know he feels sad and angry and yet he still finds a way to hide that so that I can feel better, so I don't start to cry. I know when he sees me fall apart his heart breaks because he feels like he is the only one who can make me feel better. He always has to be the strong one in order to hold us together these days.

I was wondering last night how he really feels at times because people tend to always ask him only about me, "how is your wife doing, how is she holding up." I guess we all just assume that he is a guy so his feelings aren't spoken of as often as a my feelings are and that is not fair! I know everyone cares for him just as much and his feelings are just as important but I think it's just a general thing to do. He has been so supportive and he always has a way of making me feel better. I need to know that he is getting that support back. It starts with me because I know exactly what he feels when it comes to constantly being worried. Not only does he worry about Sami's well being but mine as well. I don't want him to feel like he is alone in all of this because Lord knows he isn't. He is a wonderful person and I thank the Lord above everyday for bringing him into my life. If I didn't have his unconditional love and support, I wouldn't be holding up as well as I am today.

By the way, we are excited because on Friday are going to go get a 3D ultrasound. Maybe we will be able to see her little face since she always tends to hide it. Then on Tuesday back to the Parenatologist... I don't look forward to those visits because I never walk out of there feeling good. Luckily, my honey has the day off so he will be able to be there with me for that. Going alone to those visits really sucks! I will keep everyone posted with how things are going with Sami.
If I don't say it often.. THANK YOU everyone for being so supportive! God bless...

Thursday, June 25, 2009

Feeling blue today

I guess this is part of it but I am totally feeling like crap today, I am just so sad. I want to just lay in bed and cry. There are some days when all this seems more real than others and well I guess today is one of them. At this point I am not sure what I really feel. Is it anger, fear, sadness??? Who can answer that?
I feel like I am alone in all of this and really I am not, I read so many stories of woman who have been through this and are currently going through and I wonder if I can be as strong as them. I guess, we don't have much of a choice but to go with it but still, where does that strength come from? It has to be higher power because I cannot explain it.
People ask me, "How are you feeling?" I always say fine but in reality I want to tell them that I my heart aches so much and this isn't fair. Why me? We planned for this little miracle, took every pro caution, I took vitamins for months before as they say a woman should and for what??? What is the meaning of all of this? God, have so many questions!!! I have tried to not feel angry but today I just cannot help it. I am so mad and I am not even sure exactly who or what I am mad at. Can it just be so much sadness that makes me feel this way? I am not sure but I really just want it to go away because I am going to go crazy. I just want to be able to enjoy this but I can't!!
God, please help me!!!!

Saturday, June 20, 2009

I don't like weekends anymore!

Is it weird that I do not look forward to the weekends? Only because during the week it's the same routine, same people... they know the situation and no questions are asked. It's kind of like I am in a protected shell. However on the weekends it's going places, seeing new people and they do ask questions. "When are you due?" "Do you know what you are having?" BLAH, BLAH, BLAH... Just makes me want tp come home and cry.
I want to pretend that all is well because so many times that is how I feel but there is always that black cloud following me. A constant reminder. Perhaps I feel that way so I do not feel so attached but I think it is a little too late for that. I have a little baby moving in my belly and everyday she seems to be moving more and more. She doesn't let me forget about her!!! Lol

We bought a fetal heart doppler to listen for her heart. Gives me a peace of mind that all is well with her. I look forward to listing to heart everyday but because it sounds so normal it so hard to imagine something is really wrong with her. It's a big contradiction in my head and heart. I want to just enjoy the times I have with her without worrying but it's just not possible. Then I wonder would it be worse to just find out all the defects at birth with no prior warnings or my situation now? I guess my situation, although hard it is better in a sense because I don't take any moment of this pregnancy for granted. I have aches and pains but that doesn't even matter, she is still alive and growing and that what is most important. Sami has to be growing all right because Lord knows her Momma sure is!! (I am always hungry)

I have two birthday parties to go today, although I am not as excited as a should be I will go and face the questions and people touching my belly and just make the best of it. I should be proud of this belly of mine, it is a blessing in every way possible. With Julian I couldn't wait for him to be born, I counted the days down and this time... Not so much, I want time to slow down so that I can have this time with her. In a sense that sounds selfish of me but it's true, I don't want to share her. I want to be the one to protect her and give her what she needs right now. I am sure she feels all the love that I have for her and we have not even met face to face yet! God is amazing to let that happen.

Wednesday, June 17, 2009

What is an encephalocele?

An encephalocele (in-sef-a-luh-seal) is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain (the meninges) can protrude into a sac-like formation. An encephalocele (sometimes called a cephalocele, or meningoencephalocele) is classified as a neural tube defect. The neural tube is the tissue of an embryo (term used to describe a developing baby to the eighth week after conception) that becomes the brain, spinal cord, and the bones surrounding each.

A meningocele is an encephalocele that contains only the meninges and cerebral spinal fluid. These type of defects have a much better prognosis than those where brain tissue also protrudes into the sac.

The most common locations for an encephalocele include the midline of the upper part of the skull, the area between the forehead and the nose or the back of the skull. The encephaloceles at the back of the skull are more likely to be associated with neurologic problems. Occasionally, an encephalocele may go undetected because of its size and location, but typically it is an obvious malformation.

Encephaloceles are frequently associated with other cranial (head, skull, or brain) and/or facial abnormalities. In the United States, encephaloceles occur in approximately 1-4 per 10,000 live births. The presence of an encephalocele is associated with an increased incidence of death in utero. It is estimated that only half survive to birth. It is seen more commonly in females than males. We do not know the cause of an encephalocele but we do know it is not due to anything the mother did or did not do during pregnancy.

Prenatal Diagnosis of an encephalocele:

Most encephaloceles are diagnosed on routine ultrasound. The alpha-fetoprotein levels are not typically elevated with this defect because the defect is covered by skin. Once an encephalocele is diagnosed, a thorough examination of the baby is recommended to look for other anomalies. Recently, some research suggests the fetal MRI may give a more detailed picture of the central nervous system. Ultrasound imaging can be limited by the mother's body habitus, the surrounding amniotic fluid, and the position of the fetus. MRI is a non-invasive diagnostic test that produces better images of soft tissue, and bone or dense tissue does not interfere with the image as it can with ultrasound. The best assessment is done when the fetus is still, which is the challenge of fetal MRI. Your obstetrician will most likely refer you to a specialist that handles high-risk pregnancies. These doctors are called perinatologists.

How does an encephalocele affect my baby?
The prognosis for an encephalocele depends on the size of the defects and the amount of brain tissue that has herniated out into the sac, the location of the defect and the presence of other birth defects or anomalies. Encephaloceles may be associated with brain malformations that can have an effect on the prognosis.

The location of the encephalocele greatly impacts the prognosis. Those located in the front, have a 100 percent survival rate, while those located in the back have a 55 percent survival rate. In the United States the most common type of encephalocele is in the back, while in Southeast Asia a frontal type is more common. Approximately 13 to 44 percent of these babies have a chromosomal abnormality and approximately 75 percent of babies who survive will have some degree of mental deficit.

The most commonly associated abnormalities and symptoms of survivors include: hydrocephalus (abnormal accumulation of fluid in the brain), spastic quadriplegia (paralysis of the arms and legs), microcephaly (smaller than average head size), ataxia (uncoordinated voluntary movements), developmental delays, vision problems, growth retardation and seizures. It is recommended that these babies be delivered at a tertiary care center (a hospital that is capable of caring for critically ill infants) to facilitate coordination of services for the newborn.

How does an encephalocele affect my pregnancy?

A thorough search for associated anomalies should be done with a targeted ultrasound performed by a perinatologist. Accurate diagnosis of the defect is essential to provide appropriate prognosis and genetic counseling. An MRI may also be recommended to get a more accurate and detailed picture of the defect and any associated anomalies.

Because of the risk of chromosomal abnormalities, an amniocentesis will be offered.

With an isolated encephalocele there is no increased risk for future pregnancies to be affected in the same way. However, if the encephalocele is part of a syndrome, this may not be true. A syndrome would have associated anomalies along with the encephalocele. A genetic consultation is recommended for any family with a baby affected with an encephalocele.

If the encephalocele is large, the baby's head may be too big to fit through the birth canal and a Caesarean section may be required to deliver the baby. However, minimizing maternal risk is most important when the encephalocele is large and there are associated anomalies because of the poor prognosis for the baby.

Fetuses with an encephalocele are very likely to die before birth. Approximately 21 percent, or one in five, are born alive. Of those born alive, only half will survive. Fetuses with an front-type encephalocele are much more likely to survive than those with an encephalocele on the back of the head. The absence of brain tissue within the sac is the single most favorable prognostic indicator. Presence of associated malformations is another indicator of prognosis.

Once an accurate diagnosis of the defect and any associated anomalies has been made, you will be counseled regarding your baby's probable outcome or prognosis. If the prognosis is poor but your desire is to continue the pregnancy, palliative care may be offered as an option of care for your baby when he or she is born.

How is an encephalocele treated?

Surgery will be needed to place the protruding tissues, brain and cerebral spinal fluid back into the skull and close the opening. The baby is normally given at least a few days and up to a few months to adjust to life outside the womb before surgery is attempted. Most surgical repairs are done between birth to 4 months of age. The timing of the surgery depends on the size, location, associated anomalies and whether the defect is skin covered. Surgery must be performed more quickly if there is no skin covering over the defect or if there is hemorrhage, airway obstruction or impairment of vision. When surgical correction is not urgent, the baby is evaluated for other problems before surgery.

Sometimes, if the defect is large and/or other anomalies are found, the recommendation for treatment may be to provide palliative care for the baby. This means we support the baby with food, comfort and oxygen as needed, but no surgical procedures are done and the baby's life is not extended with any type of life support machinery. These babies can even go home with hospice support if that is desired. We will have open discussions about your desires for your baby and family to help guide your decisions for treatment.

What about after surgery?

After surgery, recovery will vary depending on the age of the baby, how extensive of a repair was required and surgical time. Your baby will likely need assistance with breathing for a time. An endotracheal tube is passed between the two vocal cords and into the trachea or windpipe. This tube is attached to a ventilator, which can deliver oxygen and help the baby's lungs to inflate.

He or she also will have IV lines. If the baby is a newborn, these lines may be placed in the umbilical cord. The umbilical cord normally has two arteries and one vein. The arterial line provides access for blood to be drawn for lab work rather than having to do a needle stick. The blood pressure can also be monitored via an arterial line. Fluids and medication can be administered through this line as well.

The vein in the umbilical cord will also be threaded with a thin flexible catheter or tubing. Through this line we can give nourishment in the form of an IV solutions called TPN, or total parenteral nutrition, if the baby is not able to eat. Two types of solutions are given. One contains all the calories, vitamins and minerals necessary for normal daily intake. This is a yellow solution. Another type of nourishment provided through this line is fats. This solution appears white and milky.

The baby also may have a peripheral IV. These lines can be in the arms, hands, feet, or scalp.

Each procedure will be explained to you as it is done unless it is an emergency situation.

Will I be able to help care for my baby after surgery?

Yes. Please ask your baby's nurse about ways to interact with and care for your baby. If you had planned to breastfeed your baby, you can begin to pump and freeze your breast milk while you are still in the hospital. A lactation consultant can assist in answering your questions. Your milk will be frozen and stored in the Neonatal Intensive Care Unit until your baby is ready for it. The NICU has breast pumps and private rooms available to you when you are visiting. You can bring in pictures, small toys, booties and blankets for your baby while he or she is in the NICU.

When can my baby go home?

Your baby will go home when he or she has recovered from surgery and is able to take in enough food to maintain and gain weight. The baby's respiratory status or breathing also must be stable. If it is necessary to send your baby home with equipment, you will be trained on how to care for the baby and the equipment, as well as emergency procedures. These babies often require follow-up with a variety of specialists once they go home.

If you have decided against aggressive therapy, the baby can go home with you with support from a hospice service.

What is my baby's long-term prognosis?

Babies with a frontal encephalocele, no associated syndrome or defects and no brain tissue herniating into the sac have a good chance of survival.

Babies with an encephalocele at the back of the head have a 55 percent survival rate. Long-term prognosis for survival becomes less likely if there are other complications, such as associated defects, syndromes or if brain tissue protrudes into the sac. Approximately 75 percent of these infants who do survive have varying degrees of mental deficit

I cannot believe I did this!!!

Yesterday on my way home I decided to stop at the grocery store. I had put Julian in his car seat, unloaded the groceries and closed the door. Julian had the keys in his hand, he locked the car!!!! I was freaking out.... I kept asking him to push the button, he was just waving hi to me! He loves to push the alarm button but for some reason he was just not in mood, he dropped the keys, they fell on the side of his car seat. I was so SCARED, the windows were rolled up and it was a warm afternoon.
I called my brother Ernie, freaking out and he was going to come to the rescue with the spare key but he was at least 40 minutes away. I really started to panic now. I called the road side assistance and they called the police department. I am glad they came out right away. I was trying to stay calm so he wouldn't start crying but I couldn't help it. I am already an emotional wreck, than this!!! The really nice deputy called for a tow truck since he didn't want to break the window of the car. It took a while to get the car opened but it work... The alarm went off and freaked Julian out but he was OK. A little sweaty and sticky but my little guy was safe. It took about 40 minutes or so. By the time my brother was near by we were on our way home. I was so shaken up, I was still crying. How the heck did I let that happen? Oh the joys of parenting!!!!!!

This morning I had a Dr. appointment with my regular OB (Dr. JU C. Rhee) he did his regular measurements and listened for a little heartbeat. Thank God he found it fast... her rate was a 140 this morning. I was so relieved to hear everything was going well so far, hearing that little heart felt so good. I think with my last pregnancy I took those little moments for granted. I tried to get a full report from the paranatologist in regards to the last ultrasound but Dr. Rhee didn't have it yet. Once they get it they will send it my way. The results from the second half of the blood work came back and they obviously said there are no chromosome abnormalities (which I knew) but they said there found no neural tube defects which threw me for a loop because the encephalocele she has, that is neural tube defect!!! Hummm???? More things for me to try to google now.
Today is a good day.... Sami's heart is beating and I have felt her move today. Julian woke up in a really good mood and kissed his mommy good bye without crying!! Let's see what tomorrow brings!

Monday, June 15, 2009

My story

I am not much of a blogger, I am still learning. I wanted to share my story because I need to have some way of sharing my feelings and thoughts of what I am going through.

I am currently 18 weeks pregnant with my little Sami. I knew from the start it was going to be a baby girl. A few bad mornings but all in all a good pregnancy. I was asked if I wanted to take this new test offered to see if there are any chromosome abnormalities or any defects. It was simple, go draw blood, go get an ultrasound and another blood test a few weeks later. I was like OK, an extra sneak peek at our little one, why wouldn't I do it? Well now that I look back maybe I shouldn't have!!! At 12 weeks I had the ultrasound done at the Parinatologist office (I have never even heard of that or been there). I was excited, I went alone because my husband had to work but I assured him I would come home with pictures to share.

This was a Nuchal Translucency, they measure the fluid on the back of the neck. I believe it supposed to be around 2.5mm, well my measurement was 7.5mm. A big indication that something was not going right. The parinatologist said it was a big indication for a chromosome abnormality or a heart defect. I was alone at this ultrasound trying to comprehend what was just said to me without breaking down right then and there, I was thinking in my head Lord, please help me!!!
I spoke to the genetic counselor who suggested I go in for the CVS test. I did that at 14 weeks (05/18/09), a tad bit more painful than I anticipated however, I survived. Waiting for the results was horrible. I wasn't able to sleep well, my mind was just consumed with "what if's".


On May 29Th, we finally got a call back. No chromosome abnormalities, however they did that chromosome #2 is inverted but wasn't something to be worried about and by the way... It's a girl!! I knew it! Since it was late Friday we had to go in on Monday to speak the genetic counselor again to go over everything.

We were told that the inverted chromosome is carried by either parent. We had to get tested for that just to make sure their findings were correct. They said since we are physically OK then there is no big reason for concern. Now the next step is to do another ultrasound to measure the fluid again. She said it could go away on it's own or still be there because of another reason. At this point, I was so happy and I was finally able to sleep well. I still had reason to worry but at this point I really believed it was going to be OK.

Well on June 9Th my world came crashing down on me. I went in thinking nothing of it, another photo shoot for my baby. I was really looking forward to this visit because I thought it was going to go well. Well the Dr. measured and snapped photos while being very quiet, not a good sign. She sat me up and told me that the cystic hygroma had increased and moved into her chest cavity. She did find a heart defect but wasn't able to pin point it because it wasn't too visible because her tummy was covering it, a diaphragmatic hernia. Her organs were all over the place. Then on top of that she has a large encephalocele, her skull didn't close right so her brain is on the outside. She was talking and I was trying to hold it together. No mother to be should ever hear that there is no hope for their child. A few minutes later I spoke to the counselor again and she pretty much told me what the Dr had just said. She will probably not make it through the delivery and that now their main concern was me!!! What? What about her? She is my concern. Now my options. terminate or continue with the pregnancy????

Well didn't take too long before my mind was made up, we are moving forward with this pregnancy. I am worried about my health of course, I have a 19Th month old to care for too. My son and my husband are my world and they need me. Lord, please gives us both the strength to get through this, if in the end I get to hold my little Sami in my arms then it will all be worth it. I know that God is testing me, something good will come of this, I really believe it will.