Tuesday, May 18, 2010

Looking for more answers vs. reassurance

A week ago, Mark and I had an appointment to see the genetic counselor. This individual works with the geneticist who saw Karissa a few months before she died. Anyways, the reason for this appointment was because I am considered advanced maternal age. Nice huh? Oh, and I am 35, just in case you were wondering how old I really am.

So, we get to the appointment and the counselor starts by asking us to tell her about our family history, previous pregnancies, children, ect. How did I start the conversation? Of course by telling her that our daughter died of epilepsy. I informed her that she had seen the geneticist who ran every genetic and metabolic test possible. That he had tested for syndromes that are characterized by seizures and developmental delay, such as angelmans syndrome and fragile X, two syndromes for which Karissa had displayed some characteristics. That he was unable to find anything to explain her severe global developmental delay and why she was starting to show signs of regression.

The counselor proceeded to bring up Karissa's chart and noted that everything was normal. Every test that was done from birth to the day she died was normal. A chromosome study was also done and Karissa had the correct number of chromosomes. They even looked at the tips of every single chromosome, called telomeres, and these were also normal. There was, however, a test that was done when Karissa was 2 weeks old that came up abnormal but when it was re-checked a year later, it was normal. Up until our appointment on Monday, I was never made aware that the test was re-checked and that is was normal. Kinda wished I had known, as it would have eased my mind of all the 'what-ifs' that went through my mind (and still do) following Karissa's death.

Karissa had elevated levels of 3-hydroxyisovalericacid which is associated with defects in biotin (a B-complex vitamin) metabolism. I remember the day the neurologist went over the results of that specific test with me. He said something like "her lab value is slightly elevated but it is nothing to worry about. Infants that have abnormal (elevated) lab values don't end up living very long and her lab value is close to the normal value. I am not worried." And that was it. Thanks.

So of course, you can understand when I tell you that after she died, that was all I kept thinking about. Was that how she died? Did the lab value progressively get worse? Did it increase even more? And the worst thought of all...could we have corrected it thereby preventing her death? The answer, according to my research, was probably so. Almost 2 years later, I can now put that thought to rest. I know that is not why she died.

I was going into this appointment with the understanding that we would be informed of all our options for prenatal screening: CVS, amnio, ect... We declined each one, not wanting to risk anything to our unborn babies. Besides, it would not in any way change our decision to have our baby/babies if something was wrong. What I didn't expect was to delve into Karissa's medical history. As hard as it was, I am glad we did. I was always looking for an answer to why Karissa died. Yes, she had a seizure that was so bad it took her life, but what else? What else caused her to regress in almost all areas of development.

After spending almost half of the appointment talking about Karissa, the counselor said that it is very unlikely that our babies will be sick like Karissa. She said that there is a 25% chance that one or both babies could have epilepsy, IF the epilepsy is genetic, which, as far as we know, is NOT! She even went as far to say that she feels as if both babies will be fine. Only time will tell. But at least I got some reassurance from that appointment. I am thankful.

Friday, May 14, 2010

Vivid. Crystal Clear. Memories.

Perfectly groomed grounds.
Bright flowers.
The smell of the air.
The many many trees that lined the walkways with their trunks painted white.
The waterfall.
Sounds of the maintenance people and housekeeping driving by on their carts.
Stillness of the desert nights.
The porch.
The way the air felt as I held you on the porch while you were sleeping.
Splashing in the pool.
The perfect words you spoke to me that I will cherish forever.
The starry nights.
Beautiful mountains.
Discovering your first two freckles on your perfect little face.
The cool tile of the bathroom floor.
The crickets.
Watching you hold daddy's hand as you walked across the street.
Feels like just yesterday you were here and we were enjoying our very last vacation with you.
I want those days back but all I have left are the sweet memories that I never, every want to forget.
I miss you.

Wednesday, May 12, 2010

For those who walk the road of infertility

Thoughts on Becoming a Mother:

There are women that become mothers without
effort, without thought, without patience or loss and
though they are good mothers and love their children,
I know that I will be better.

I will be better not because of genetics, or money
or that I have read more books but because I have
struggled and toiled for this child.

I have longed and waited. I have cried and prayed.
I have endured and planned over and over again.
Like most things in life, the people who truly
have appreciation are those who have struggled to
attain their dreams.

I will notice everything about my child.
I will take time to watch my child sleep, explore
and discover. I will marvel at this miracle every day
for the rest of my life. I will be happy when I wake
in the middle of the night to the sound of my child,
knowing that I can comfort, hold and feed him and
that I am not waking to take another temperature,
pop another pill, take another shot or cry tears of
a broken dream. My dream will be crying for me.

I count myself lucky in this sense; that God has
given me this insight, this special vision with which
I will look upon my child that my friends will not

Whether I parent a child I actually give birth to
or a child that God leads me to, I will not be
careless with my love.

I will be a better mother for all that I have
endured. I am a better wife, a better aunt, a better
daughter, neighbor, friend and sister because I have
known pain. I know disillusionment as I have been
betrayed by
my own body. I have been tried by fire
and hell many
never face, yet given time, I stood tall.
I have prevailed.
I have succeeded. I have won.

So now, when others hurt around me, I do not run
from their pain in order to save myself discomfort. I
see it, mourn it, and join them in theirs. I listen.
And even though I cannot make it better, I can
make it less lonely. I have learned the immense power
of another hand holding tight to mine, of other eyes
that moisten as they learn to accept the harsh truth
and when life is beyond hard. I have learned a
compassion that only comes with walking in those
shoes. I have learned to appreciate life.
Yes I will be a wonderful mother.

Author Unknown

Saturday, May 8, 2010

194 injections, 16 blood draws, 11 ultrasound exams, 1 egg retrieval, 3 embryo transfers, lots of pills and a lot of hoping and praying...

...we are finally pregnant...with TWINS! Oh, and those figures do not include our very first IVF cycle that resulted in our miracle, Karissa. It has been a very long and emotional journey to get where we are today, but it has been well worth it!! I am so thankful and so very blessed. This is a dream come true. Here is a glimpse of our journey, from the time it all began to now.

In 2004, we were told that IVF, or, in vitro fertilization, was our only hope of having a biological child. In May of 2004, we started the intense and arduous process of IVF. We were very successful and pleased with the results, not just because we got pregnant on the very first try, but because we had embryos to freeze for later use. Here is a run-down of our first cycle with IVF:

* 31 eggs retrieved...yes, I am an egg-making machine!!!!
* 17 eggs successfully fertilized
* 10 perfect-to-excellent quality embryos

In July of 2004, 2 perfect quality embryos were transferred back into my uterus, with one going on to implant which resulted in our first pregnancy with Karissa. About a year-and-a-half later, we proceeded with our second cycle which was a frozen embryo cycle or FET. The day of the embryo transfer, we found out that the 10 embryos we thought we originally had was really 8. It turned out that 2 of the embryos stop developing. So, we only had 6 frozen embryos left rather than 8. We also found out 3 of our embryos did not survive the thaw, thus leaving us with 3 embryos suitable for transfer. Our 3 remaining embryos were transferred and we got pregnant again. Unfortunately, the pregnancy ended in a miscarriage at 7 1/2 weeks. At that point, I had decided that I would NEVER put myself through not only the emotional, but physical stress of another cycle. I was perfectly content and had absolutely no desire to ever get pregnant again.

Certain of the fact that we wanted more children, our plan was to adopt. That was the plan, although we never really pursued it. People would ask us "are you going to have more kids?" and the response was always, "yes, we are planning to adopt."

On July 8th, 2008, our world was turned completely upside down. Obviously, any plans or thoughts in the way of having more kids was put on hold.

Early the following year, I started thinking that I wanted to get pregnant again and if that meant going through another round, or 2 or 3 of IVF, then I was ok with that. My heart's desire literally changed. I expressed this to Mark and he said that we should wait until a year had passed since Karissa's death before even considering the possibility of pursuing IVF again. So I waited and prayed and my desire grew even deeper.

In August of 2009, we proceeded with our plans of IVF. We shared our plans with our parents, my sister and a few of my very closest friends. It was by no means an easy decision. First, the possibility of having another child with epilepsy terrified me and still does. Second, other than the epilepsy, we never knew what type of metabolic or genetic problem Karissa had, if any. My faith was tested, and still is on a daily basis. Throughout this whole process and even now, I pray on a continual basis for peace. I am so blessed and thankful that the God has granted me peace and the ability to trust Him.

So, here is the run-d0wn of our third round of IVF, or second fresh cycle done in August:

* 23 eggs retrieved; not as good as before but then again, I am 5 years older
* 17 eggs successfully fertilized
* 11, 5 days blastocysts, or 5 day old embryos

In September, 2 perfect quality embryos were transferred to my uterus. The embryologist said "you may just get twins because these embryos are perfect." Wow! Music to my ears! Two weeks later, we found out we were unsuccessful. Huh? We were all stunned. Even my doctor said he was shocked. Everything we perfect...the embryos, my hormone levels and the lining of my uterus was perfect and ready to support the implantation of one or both embryos.

December 2009 we went for our 4th cycle, which again, was an FET cycle rather than a fresh cycle since we were using frozen embryos. They thawed 3, transferred the 3 and again, we were unsuccessful. To say we were all frustrated is an understatement! My doctor said he thought I would be pregnant by now.

In February we continued on with our 5th cycle, again an FET cycle. This time, 4 embryos where thawed and transferred. I knew from the very beginning of this cycle that we would be successful. I felt very positive. I was right!

On the day of my pregnancy test, 2 weeks after our embryo transfer, I found out that they ran a pregnancy test the week before when I was getting my hormone levels checked. Turns out it was positive and my HCG (pregnancy hormone) was 67. That was a great number, considering how early it still was. The HCG is supposed to double every 48 hours. As I was waiting for the results from my test, the embryologist said she expected my HCG to increase from 67 to 500-600. A good four hours later, the nurse called and said "we have the results of your HCG and it is a very strong number. Your HCG is 1,397." I asked her to repeat the number, like 3 times! I remember saying something like "1,397 as in one thousand three hundred and ninety seven? Are you sure you have the right number?" I immediately got on the phone with my parents, my sister and texted Mark's parents! We were all elated! I knew that we were pregnant with twins but I would have to wait another 2 weeks for a confirmation as to how many actually implanted. On April 9th, 2010, my dream of having twins came true, well, actually, my dream of just getting pregnant came true. I am blessed!

~ 6 weeks 5 days ~

~ 10 weeks 2 days ~

Thursday, May 6, 2010

Another dream

I am still alive and well! I have just been very pre-occupied for the past month or so.

I had another strange dream last night. Once again, the recurring theme that I blogged about a while back was very much present. I dreamt that my house was on fire, only the house was identical to mine on the outside but the inside was identical to my parents. Karissa's room was my sister Chelsea's room, which is ironic because that is where Karissa would sleep when my parents would watch her.

When I saw that the house was on fire, I grabbed Karissa and her ladybug blanket and told the two strangers that were with me that we needed to get out of the house. We ran into the backyard. I was frantic and ran back into the house to get all of Karissa's scrapbooks and her memory box filled with very special items like her first tooth, locks of hair and her homecoming outfit. I wanted to retrieve these items because I figured they were all the memories that I had left of her. Very precious memories that I cherished, especially since she was gone. But wait, wasn't she just outside, alive and well?