Showing posts with label Trisomy 18. Show all posts
Showing posts with label Trisomy 18. Show all posts

Tuesday, August 17, 2010

Difficult Year Part II



Difficult Year Part II--Dealing with Grief

I left off my last post having found out I had lost our baby after an ectopic pregnancy.  Most likely our baby had Trisomy 18.  This time I had seen our baby move.  I saw the heartbeat.  I loved (love) that baby with all my heart.  

The next day C1 was in a geography bee at school.  I went to cheer him on, but it felt hollow.  It felt like the world should be stopping so I could grieve.  

My husband was across the world in China when I called him from the doctor's office.  Even though there was nothing he could do physically to bring our baby back, he cut his trip short and came home.  He got home on my birthday, which was two days after I found out we had miscarried.  When he walked in through the door I just melted into his arms and sobbed.  

We talked and talked about our options.  In the end we scheduled a  d&c for the following week.  I could not bear the thought of my baby accidentally being flushed down a toilet.  In truth, I was still having trouble accepting I had lost another baby, and so I asked the doctor to check for a heartbeat one more time before they removed the baby.  They checked, put me to sleep and I woke up after everything was done.  

I still cry thinking about it.  

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Turning to my Father in Heaven helped me get through the grief.  In my past, I've had experiences where I thought I knew what my family and I should do.  My husband's job was, at one point, going to take him to Florida for over a year.  Rather than commuting, we thought about renting our home out and renting another in Florida.  I kept trying and trying to make it work.  The arrangements kept falling apart.  My dear sister wisely asked me, "Have you prayed about this?"  

In truth I hadn't.  I figured reuniting my family was a good thing.  Eliminating the need for my husband to travel was a good thing.  That's why I pressed forward.  

When I finally humbled myself enough to pray about the matter, we received inspiration that the children and I should stay put.  I didn't understand why, but trusted in our answer.  That year Florida was hit with four hurricanes and where we would have been living would have required us to evacuate at least three times while I was in my last trimester of pregnancy with Princess Ballerina.  I would have had to do this with three boys six and under who had (though I didn't know it) autism and one in particular that gets terrified of big storms.  

Though having a traveling husband while I was pregnant had its own challenges, I feel grateful for that experience that showed me in very definite, concrete ways the Lord knows better than I do.  

 Always.  

And I should add that my DH (dear hubby) was always able to get on a plane back home to us before any storm hit.  Blessings indeed.

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A month or so after my miscarriage I was met  with our ecclesiastical leader for my temple recommend.  (Everyone is welcome to worship in our chapels--whether you are a member or not--but in order to enter the temple--our holiest buildings--you have to be interviewed by ecclesiastical leaders)  At that time  I was asked if I would accept the call as the next Relief Society president.  In our church we all volunteer to serve.  Where we serve comes through inspiration to those entrusted with the stewardship or "keys" for a given unit.  The Bishop is the head of our local unit (or ward) and he has the responsibility to receive inspiration on where individuals serve.  He has two counselors who help him in decisions and management of the unit.  They (the bishopric) work with other auxiliary leaders.  Those auxiliaries are: High Priests Group and Elders Quorum (the adult male groups), Relief Society (all adult females), Sunday School (gospel instruction for the second hour of church for all individuals over 12), Young Men's (males between 12 and 18), Young Women's  (females between 12 and 18) and Primary (children 18 months to 12 years).  Each group has a presidency (a president and two counselors) who have the responsibilities of helping their designated group.  The presidents (or a counselor if they cannot come) meet with the Bishopric and others in a ward council to discuss the welfare of the members.  The Primary presidency is always composed of females.  

As I mentioned, Relief Society is the women's organization in our church.  My responsibility would be to help look after the physical (temporal) and spiritual needs of the women in the ward.  I would also meet with families who needed assistance and help assess what needs the church could help meet as well as counsel /guide/direct/point them in the right direction to gain skills they could use as well. 
I chose two wonderful women whom I didn't know very well at the time to be my counselors.   Susan and Katie.  Susan had been a Relief Society president in the past and she taught me so much.  Katie was younger than I though still a mother of four. 

The first couple of months that I was Relief Society president, there were three funerals in our ward.  I was able to use my own very personal and very raw experience with grief and the comfort I found in the Lord to help others in their time of need.  Though none of us can understand the suffering the Savior went through in the Garden of Gethsemane, the scriptures teach us:

 Alma 7:12 And he will take upon him adeath, that he may bloose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to csuccor his people according to their infirmities.

My Savior endured unimaginable agony as He made the Atonement , and He did it because He loves me, and so He would understand how to lift and help each of us, and because it was part of our Heavenly Father's plan to help us all return to them someday.  I am grateful for that.   

More tomorrow. 

Monday, August 16, 2010

Catching up after a very difficult year Part I

Wow. Been a while since I posted. I had a pretty hard year. A few months after my ectopic pregnancy I got pregnant again and was pretty excited. I was pretty sick, which I took to be good sign--baby must be growing right--right?

I was dealing with thyroid issues again and went to an endocronologist who diagnosed me with transient hyperthyroidism due to pregnancy.

My doctors wanted me to do an ultrasound at 7-8 weeks to make sure the baby was in the right place after they had seen an appropriate rise in hormone levels. I had one and we saw a heartbeat and it was great.

At 12 weeks I had another ultrasound--the screening one they do for chromosomal disorders. I had my blood work drawn too. Our sweet little baby was moving and kicking and had a nice heartbeat. The doctor told me though that the nuchial folds were a little thicker than normal and they might want to do some more tests--depending on how the blood work turned out. I asked how thick was normal. Answer: 4. How thick was our baby's nuchial folds? Answer: 9.

It was not something I was expecting.

I went over to my friends house after my appointment to get my kids. She sat with me as I expressed my fears that the baby would be okay. I called my husband (dh) who was at the time out-of-the-country again. We talked briefly and decided try and not worry until we had the results of the tests.

Long story made shorter, after much prayer we felt at peace. When word came the following week that our baby had a 1 in 10 chance for trisomy 18 and a 1 in 10 for trisomy 21 (Down Syndrome) we were not surprised. It was a time of great emotion.

For those who don't know trisomy 21 is most commonly referred to as Down Syndrome. The 21st chromosome has three copies instead of the regular two. Trisomy 18 is three versions of the 18th chromosome. There is even one called trisomy 13. The 13th chromosome has an extra copy there. Birth defects and congenital heart problems are not uncommon among with these. I understand a good number of children with Down Syndrome need heart surgery. Not all do, but a good number of them. With trisomy 18, most babies do not live more than one year because of the birth defects they usually suffer from. Trisomy 13 babies are usually delivered c-section and most don't survive more than a day or two.

The doctors encouraged us to have either an amniocentisis or a CVS procedure. We prayed and talked and felt strongly that we should hold off on any more testing. We already loved our baby and no testing would change that. We did not want to do anything that might pose an additional risk to the baby.

On a brief trip out West, I found out my best friend had the same due date I did. We were both having a bit of a baby bump, so we went maternity shopping together and got some cute things. She was supportive of our decision, and a great strength to me. She herself was worried for her own baby, since she had been spotting.

(Her spotting stopped and she went on to deliver a beautiful baby girl and I couldn't be happier for her and her husband).

At my 16 week check-up, the doctor talked to me about seeing a high-risk ob/gyn to determine what extra care if any I might need given my chances for something going on with the baby. When he went to listen to the fetal heartbeat, he had a difficult time locating it. He had me move to the ultrasound room. I had a foreboding feeling.

In the next room the tech was looking at the ultrasound, and I could see that there was no swish swish of the heart beating. I asked, "There's no heartbeat is there?" She shook her head no.

I lost it.

I utterly lost it.

I don't think I've ever cried so hard in my entire life.

I had prepared myself for what I thought was the worst, that my baby would be born with trisomy 18 and I would only be able to have him or her for a year or so. I didn't realize that the chances of my baby making it to term were slim as well.

Words really can't explain how hard this experience was. I can say that my faith in God and in my Savior did make it easier. I believe that families can be eternal families, and I have had enough experiences in my life to know that I need to trust my Heavenly Father and his plan for me. And though my pain was great, the Savior knows exactly how I feel and more, because of what He did for me and all of us.

I received strength to go forward, and I am grateful for all I learned during this experience.

I'll try and post more tomorrow about our year.

Do me a favor and go hug your loved ones.