We got the call from the genetic counselor today. Our baby has been diagnosed with Turner syndrome. Which means the baby is missing all or part of (we won’t know until the “full” test is back) a sex chromosome. It also means our baby is a girl.
99% of babies with Turner’s syndrome die before 26 weeks gestation. I am currently 13 1/2 weeks. Of the babies who survive they will be short (like this baby was going to be tall anyway), infertile and are at risk for heart defects and learning disabilities. We will probably have “viability” scans every few weeks for the remainder of the pregnancy. The chance that this will recur in future pregnancies is less than 1%.
To be honest I am devastated, hurt and angry. I don’t get it and the thought of losing another baby is almost too much for me to bear right now. I don’t know whether to get maternity clothes out or keep them packed away. I don’t want to have to put them back like I did after Knox. I don’t want to wake up every day for the next 13 weeks (until I get to 26) and wonder if my baby is still alive. I don’t want to go through the grief of losing a baby before I get to hold her. I don’t want to have to explain to my children that their baby sister has died. And even if we make it to 26 weeks we aren’t safe. I don’t want to have to preface every sentence about the baby with “If she survives…”. But if she survives, I don’t want to worry about whether she’ll find a husband who is okay with not having children.
I just plain don’t want to walk down this road. I so wanted to hear “everything looks good”. But I didn’t. I don’t know why God is bringing us here. I don’t understand. Like Kerry said “The doctors didn’t give us much hope, so we can only hope in Him.” And it’s true. Talk about being brought to the point where we fully have to rely on God. I have to trust Him for peace, for the life of my unborn child and for what lies ahead. Right now I am thankful that my baby is alive today, I pray she will be alive tomorrow too. I am thankful we have answers. But I am struggling to understand and to process this all. I don’t have anything but tears and raw emotions right now.
Thank you for praying.
Month: May 2012
New Recipe Monday — Easy and simple Korean style BBQ ribs
I had some beef ribs this week that I wanted to cook, but was a little burnt out on “regular” BBQ. I found this recipe and we really liked it. I made note of the few things I did differently.
Ingredients
- 1 cup soy sauce (I used about half soy sauce and half Worcestershire sauce as our family isn’t big on strong soy sauce flavor)
- 1 cup white sugar (I used half white and half brown sugar)
- 1 teaspoon ground black pepper
- 5 cloves garlic, chopped (I didn’t use quite this much)
- 3 green onions, chopped
- 2 tablespoons Asian (toasted) sesame oil (I just used Olive oil because I don’t keep this on hand)
- 1 teaspoon sesame seeds
- 2 pounds Korean-style short ribs (beef chuck flanken, cut 1/3 to 1/2 inch thick across bones) — I used plain old beef ribs.
Directions
- Whisk together the soy sauce and sugar in a bowl until the sugar has dissolved, and stir in the black pepper, garlic, green onions, sesame oil, and sesame seeds.
- Place the ribs in a large bowl, and pour the marinade over the ribs. Stir to coat the ribs with the marinade, and refrigerate for 1 hour. Stir the ribs and marinade again, and refrigerate for 1 more hour.
- Preheat an outdoor grill for medium-high heat, and lightly oil the grate.
- Remove the ribs from the marinade, discard the marinade, and grill the ribs until brown and no longer pink in the center, about 5 minutes per side. Have a spray bottle of water handy in case the ribs flare up.
**It was raining, so I had to bake these ribs instead of grilling. They were still good. The next time I make them, I might try making them in the crock pot. **
Sacrifice
Being a wife and mother requires sacrifice. We miss out on sleep to tend to children who wake up during the night. We sacrifice comfort to spend that same night sleeping in the recliner because they can’t breathe with stuffy noses. We wash hundreds of loads of laundry and still get the question “Where are my favorite pants?” We often sacrifice hot meals to serve our families and help little ones eat.
But it’s a sacrifice we should make joyfully. It may not be easy, but we are called to respect our husbands and love our children. Are we missing God’s blessing for our lives when we’re so selfish that we fail to be willing to serve our husbands and children?
Society would tell you that we all need a little “me” time and that it’s okay to not want to be with your family, sometimes they even encourage separate vacations. I challenge you though, is that really the type of mother God has called you to be?
We shouldn’t be judging ourselves by someone else’s standard, recommendation or ideal. We should measure ourselves against the standard God has set forth for mothers and wives.
Titus 2: 3-5
3 Older women likewise are to be reverent in their behavior, not malicious gossips nor enslaved to much wine, teaching what is good, 4 so that they may encourage the young women to love their husbands, to love their children, 5 to be sensible, pure, workers at home, kind, being subject to their own husbands, so that the word of God will not be dishonored.
It is important to remember why we are doing what we are doing. It isn’t so we can win a make over or mother of the year award. It isn’t so that we can measure up to the mom or wife next door. It is so “the word of God will not be dishonored” It’s so HE can be glorified by our actions of obedience.
It isn’t easy. I have to ask for forgiveness daily for my shortcomings as a mother and wife. I fall on my knees asking for grace and for God’s love to be shown through me. I have had to go to my children and my husband, more than I would like to admit, and apologize for not being the woman God has called me to be. I am slowly growing, but I fall short so very often.
God created mothers with a specific purpose, when we are obedient to Him we honor HIM, we glorify HIM, we sacrifice for HIM. Being a mother is honorable, not because of us but because of God’s grace. We are blessed to show the love of God to our children and husbands through our actions, our words, our sacrifice. If we play the “martyr” card, and sacrifice…but do it with a sigh or with the wrong motive…we’re seeking glory for ourselves and not to glorify God.
I am so blessed to be a mother. I have learned lessons about forgiveness, love, humbleness and redemption by being a mother. I have grown to see children as the blessings God sees. I have learned to delight in my children, to delight in the sacrifice of motherhood. I have known the ache a mother feels for her children and I know what it is to pray fervently for those children God has entrusted to me. With motherhood, I gained new appreciation for the mothers in my life and the sacrifices and prayers they’ve made on my behalf. More than anything though, God has shown me more opportunity to become the woman He’s called me to be. He has taught me more about sacrifice, service and love than I could have ever imagined.
I am thankful for the gift of motherhood, I am blessed daily to bring honor to God by caring for my children.
How it went and the full story
5/10/12
Warning, this post is a little long, but it seems like I’ve explained this whole thing a hundred times. I’ve decided to just make business cards and hand them out saying “just visit my blog”. I’m only half kidding, but here is the whole story…
Today is over. I am thankful. I slept surprisingly well last night, although I woke up several times, I was able to get back to sleep.
Our appointment was for 9am this morning, I was told to bring a book and be prepared to wait. My initial thought was “there is no way I’m going to be able to concentrate and read anything.” Thankfully they had a TV in the waiting room and I didn’t have to wait as long as expected.
A week ago we had a 12 week sonogram that measures nuchal translucency (the scruff of baby’s neck). It measures the amount of fluid in that little pocket, if the measurement is high it can indicate that baby isn’t able to circulate fluid like it should. Normal is less than 2.5mm, ours measured 6mm, which is pretty significant. It is considered a “soft” marker for chromosome abnormalities or heart defects. I also had lab work drawn with it, which was actually normal, however the blood work combined with the NT measurement doesn’t bring my risk to “normal” yet. So we were referred to maternal fetal medicine for further genetic counseling and testing. That appointment was today.
We met first with the genetic counselor to talk family history (moms, dads, aunts, uncles, cousins, grandparents, siblings). We talked about my 3 previous losses, this pregnancy and our understanding of why we were there. She went through our options for testing so fast it made our heads spin, and I’m not sure I could tell you exactly what she said anyway. And I’ll tell you, she could whip out a family pedigree faster than I could draw 2 lines.
Our next step was to see the sonographer to re-measure the NT, look baby over in general and check position of the placenta in case we decided for the CVS (chorionic villus sampling) test. The sonographer was super nice and very calming. He did a really nice job of explaining what he was seeing and what he was looking for. When he first measured the NT, his comment was “I thought the measurement said 6.” I told him it did and asked what it was now. “I’m not getting 6” he said. The measurements he was getting were closer to 4mm, which is still abnormal, but less than last week. I was encouraged when I heard that, even though I know it’s still not “normal”.
There were some other things that looked good for our little one as well. We could clearly see the nasal bone and nose, which is good. Apparently, in baby’s who have Down’s syndrome, it may be difficult to see at 12 weeks. Our baby has also grown half an inch or so in a week, which is reassuring as well.
I didn’t get a good picture of the NT from today, but got a great picture of this little baby’s profile. You can make out nose, lips and chin.
This was the fun part of the morning really. The sonographer said my placenta was in a perfect spot for the CVS and the baby was way on the other side of the apartment, so it *should* be an easy procedure if we decided to do it.
Kerry and I talked about it a bit. I’m an information person, I like to know what I’m dealing with and how it’s going to affect the course of treatment from here forward. The risk to the baby for the CVS is almost the same as the amniocentesis, which is the other option for chromosome studies but can’t be done until 16-18 weeks. We elected for the CVS for a couple of reasons. One is that we’d have the results sooner and the other is that by waiting for the amnio, we cross the time frame when I lost Knox. If the baby would die between now and the time for the amnio, it would be harder to get tissue samples for chromosome studies to determine what *might* have happened. And Kerry said “you’ll be a wreck if you wait another 3 weeks”, I’ve gotta say he’s right too.
The CVS test is where they insert a needle through my abdomen, through the uterus and into placenta. They collect a sample of the chorionic villus (which are the finger-like projections of the placenta into the uterus), that contains virtually the same genetic material as the baby.
They’ll send that sample off and the first results we’ll get back within 48-72 hours, since its Thursday that means we’ll hear on Monday sometime. The initial results will tell us whether our baby has one of the more common chromosome abnormalities. It tests for trisomy 13, 18, 21, and XY (I think that’s all of them). We’ll also be able to tell for sure if this baby is boy or girl. Then in about 2 weeks we’ll have “final” results which maps out other less common chromosome issues. If for some reason (there is a 1% chance) we can’t get results, usually because there are both normal and abnormal cells in the sample, we will have an amniocentesis at 16 weeks.
Even if the chromosome studies are normal, we’re still not considered out of the woods yet. We will go back to maternal fetal medicine for a very detailed sonogram and fetal echocardiogram to look at the structure and function of baby’s heart. Another common problem with babies who have a thick NT is heart defects. That will happen at about 22 weeks, the end of June or beginning of July for us. If that test comes back normal, we’ll be considered “in the clear” in terms of the big stuff.
So that’s all the technical stuff, as for me I’m doing okay. I’m a little sore where the needle went in and am told to expect to be sore for about a week. I have to say from the nursing perspective it was really neat to watch the needle go in and through my abdomen on the screen with the sono. I was given pretty strict instructions to take it easy for the next week. I mean strict…no standing for longer than 30 minutes, no lifting more than 30 lbs and no strenuous activities. Sheesh, for a whole week? I reminded them I have 4 children, but I’m sure the big guys will help. I’m thankful Kerry was home the rest of today and will be home tomorrow.
It seems like we’ve had so much “bad” news lately (the genetic counselor was very much a worst case scenario kind of person), that we are focusing on the “good” news we’ve had. Things like the baby is growing normally, the NT was less this week and the major structures of the brain are there. We will have an anatomy scan around 20 weeks in the OB office where they’ll check growth again, look at the major body structures to make sure they’re all there and doing what they’re supposed to. I am thankful for the peace I had this morning after we talked to the genetic counselor. God has brought peace that only He can and I so appreciate the prayers that have been said on our behalf. We welcome continued prayers for the rest of this pregnancy and this little baby.
We trust that God has knit this little child together for His glory. We don’t know what lies ahead, but we are trusting that God will guide us through it all. It is difficult to not know what is in front of us, but we know that God does. We pray for wisdom for the doctors caring for us, wisdom and peace as we get results and approach the point in my pregnancy where we lost Knox. I thought this was a neat picture of baby’s hand. It’s so incredible.
Test day
Philippians 4:6-7
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all comprehension will guard your hearts and your minds in Christ Jesus.”
March 5, 2012
As I get prepared for our appointment with maternal fetal medicine tomorrow, I spent some time reading over the prayer I wrote the day I found out we were expecting this little one. I write to get thoughts out and since Kerry was working and we wanted to keep the whole pregnant under wraps for a bit, I had to sit down for 2 minutes to write out my prayer of thanks the afternoon I found out. This is what I wrote thanking God for this precious gift. It was a good reminder today.
3/5/12
My Dear Heavenly Father,
I have to write this down because my mind is racing so much I can’t even focus long enough to say anything more than the words “Thank you! Thank you! Thank you!” Thank you for sending your son to die on the cross for my salvation. Thank you Lord for the blessing of children! And Thank you God for allowing me to be pregnant again. I cannot put into words the joy I’m feeling at this moment.
I am so grateful for this moment it’s hard to describe. I thought I would be more afraid of being pregnant after losing Knox, but I’m anticipating it. I’m excited about the prospect. I pray Lord that you will allow me to carry this baby to term and that you will help him/her to grow and develop normally. I also pray God that you will allow me to have a safe birth at home.
Lord, please guide our steps as we make decisions for my healthcare and as we look to the future of this little one. Lord, please bring about a peace as we embark on this adventure. Please help this pregnancy to glorify you and this child and his/her birth glorify you and the grace that you give. God I thank you so much for the precious blessing you have bestowed on our family. Please help us to be good stewards of the gifts You provide for us and to always trust You.
Thank you. I praise You Lord for Your provision and Your grace and Your love for me. Thank you God for the blessing of another child.
In Jesus’ precious name,
Amen.
Blank
I sit here with a blank screen in front of me, waiting for something to come, something of substance, something to be read. The truth is, very little of what is running through my brain these days seems “publishable” to the general population. Most of the time, I’m thinking about stuff that would hack some people off, stuff that I’m not quite ready to share and stuff that just doesn’t seem to gel, instead it flies through my head like little snow flakes skittering to the ground.
Little snippets of thoughts race through and I can’t quite seem to grab enough of them to make sense. I have so many things to write, so much I want to say, but I start to edit them in my head before I ever write them and decide they’re not worthy to even put down. Then I have those posts that are written, but are not likely to ever be published. They are raw, what I “really” think about some things but some words are likely to hurt no matter how true they are, or they’re words that will stir conflict and strife. They are the things I wish I could say. I write them just to get them out of my head, because I was taught if you don’t have anything nice to say, don’t say it at all. But I have to write it or it will all come tumbling out in words I actually say and will regret later.
So I sit here, blank…trying to think of something…anything…
New Recipe Monday — Taco Seasoning
I don’t usually like to buy pre-packaged seasonings. I came across this recipe several years ago and haven’t purchased taco seasoning since. I really like it because it doesn’t have salt. I’ve also made it and given it as a homemade gift.
Ingredients (I usually double this recipe)
1 tablespoon chili powder
1/4 teaspoon garlic powder
1/4 teaspoon onion powder
1/4 teaspoon crushed red pepper flakes
1/4 teaspoon dried oregano
1/2 teaspoon paprika
1 1/2 teaspoons ground cumin
1 teaspoon sea salt
1 teaspoon black pepper
Mix together in a small bowl and store in air-tight container. If I’m making tacos for our family, I’ll use about 3 Tablespoons per pound of hamburger. You can add more or less depending on your personal taste.
Five Minute Friday — Real
For some reason this didn’t post like it was supposed to on Friday. So here it is again…
When last did you write for fun?
Not to impress anyone, not for blog hits or comments or Pinterest pins?
When last did you just write?
On Fridays over here a group of people who love to go all out buck wild for the fun of the written word gather to share what five minutes buys them. Just five minutes. Unscripted. Unedited. Real.
If you have writer’s block – we have the cure <—click to tweet this!
1. Write for 5 minutes flat – no editing, no over thinking, no backtracking
2. Link back here and invite others to join in.
3. Please visit the person who linked up before you & encourage them in their comments.
OK, are you ready? Give me your best five minutes on:
Real…
Being “real” with others is so difficult. I have learned to put up walls to keep from being hurt, feeling vulnerable and being different. I was thinking tonight on my way home, how much more I’ve learned to put up walls as I’ve been teaching and as a wife in the ministry.
There is always a barrier there, I never quite reveal who I am completely. It’s a protective mechanism really, but it leaves me feeling isolated and like I’m never able to be quite who I am. I’m always on guard, always protecting myself and keeping my fences up.
Real means being okay with not being liked all the time, with putting yourself out there and being okay with the messiness of life. Being real means you’re not so focused on yourself that you forget to ask how the person you’re talking to is doing. Sometimes it means smudging your make up and hugging someone else. Real is comfort with who you are and who God made you to be.
Real doesn’t change who you are, it embraces who you were created to be. Real is a scary place to be, it isn’t easy and it’s a process. Sometimes a long one. For me, it means editing less and writing more. It means being willing to share, listen and just be. Real is praising God for the person He created me to be and striving to be everything He desires.
Talk Turkey and pray
November is a special time at our house. Three of our boys have birthdays in November. Gabe is November 22, Otto is November 23 and Zeke is November 19. We lost a baby November 15, 2009. We remember that baby each year because I truly think that God doesn’t let you forget the children He blesses you with, even if you’ve only known them for a short time.
We are looking forward to November for another reason this year. We are expecting our 8th child (5th here on earth) on November 15. We were quite surprised to find we were pregnant in early March. Everyone at our house had a bout of the flu around that time, myself included and I just wasn’t getting any better. In fact, I felt rotten and exhausted. Then coffee made me nauseous and I suspected something was up.
We are excited and to be totally honest a bit nervous. When we lost Knox last December, it was such a shock to our family. While I had suffered miscarriages previously, I had never lost a baby so late in the pregnancy. My biggest fear after he was born, due to the complications I had after he was born, was that I wouldn’t be able become pregnant again.
I am delighted to be pregnant, but I approach it with much more caution and prayer. I have prayed more fervently for this pregnancy, this child and this birth more than I have any of my others. I am nervous about how I will navigate through the weeks of this pregnancy that coincide with the days and weeks when I lost Knox. I will be 15 weeks pregnant with this pregnancy the week I would have been due with Knox (he was 15 weeks when he died). This baby is due the same day we lost another baby, but is also due the same week that we celebrate the births of our 3 oldest boys.
I have learned though and have been reminded, that this pregnancy is not in my control. He has a purpose for this child and his or her life, just as He did for Knox and the other two babies I have lost and just as He does for my 4 boys here on earth. No matter how much I want to cling to them, if God chooses to take them from this earth, it is His will and not mine. We are trusting God for my health and this baby’s health as we progress in this pregnancy. We appreciate and desire your prayers for our family and this precious baby.
This is our first picture of our little one.
I wrote the above post on Thursday night, below is an update from Friday morning…
We got a phone call this morning from our doctor. Below is an email we sent to our family…
On Wednesday we had a sonogram to check the baby and to ease my mind a bit as I’m a little anxious after we lost Knox. At that sonogram, they take a measurement called a nuchal translucency test. They measure the amount of fluid at the back of baby’s neck. Normal values are less than 2.5 mm. Ours was 6mm. They often combine that test with a blood test (which I did, but we don’t have the results for) to determine the risk of chromosomal abnormalities and heart defects. Because our result was so high, my physician called this morning to talk about options and refer me to maternal fetal medicine in Colorado Springs. With a measurement that significant it is unlikely that the blood work would bring the “risk” level down to an acceptable range.
We have a number of options. One option is to have a CVS study (where they take part of the placenta) and do genetic testing to determine if there are chromosomal abnormalities with the baby. It won’t necessarily tell us if there are cardiac defects. This test has to be done in the next week. Or we can wait for about 2 months and have an amniocentesis (where they take amniotic fluid) and do genetic testing. The risks of both procedures are the loss of the pregnancy, which is about 1:200 or 1:225 for both. While it won’t change our decision to carry this pregnancy to term, I very much need to know what I’m dealing with. I have elected to undergo the CVS test next Thursday morning at 0900 in Colorado Springs.
Regardless of the results, I will have a very detailed sonogram at 22-24 weeks and a fetal cardiac echocardiogram to evaluate the functioning of the baby’s heart and screen for any defects there. As I said, the results of these tests won’t affect whether we continue with the pregnancy as we believe every life is precious the test will help prepare us for what lies ahead. If the chromosome studies are normal, but there is a heart defect we will most likely have the baby in Denver where we have access to baby heart doctors. 🙂 If the chromosome studies are abnormal, it will change how we manage the birth in terms of interventions, such as a c-section etc. We appreciate prayers and since I often use this blog to “brain dump” I’m sure updates will follow.
We are trusting God to help us navigate through this really scary time for our family. We also know that our God is big, our God is good and that He loves His children. We trust Him for whatever the future holds for our family and our precious little baby.