Category: Pregnancy

What the heck is wrong with me anyway?

So after losing 2 babies in the second trimester in 6 months, my doctor and I decided maybe we should run some blood tests “just in case” there is something up with me that we don’t know about. We got a few answers this past week and there are still more tests that have to be done and referrals and unknowns to deal with. My fantastic doctor, I really mean that and I’m a hard girl to please, called me Tuesday night at 8:30pm to discuss my labs with me because he was going out of town. I can’t say enough about how happy I am with my doc (and this coming from a L&D nurse who had a homebirth…I really am tough to please).
Here is what we know, what we don’t and where we go from here…

I have 2 genetic mutations that affect my ability to clot blood. One is called Factor 2 mutation. We each get 2 copies, one from our mom and one from our dad. I have one normal copy and one abnormal copy, which means I am called heterozygous. In a nutshell it increases my risk of developing blood clots, especially during pregnancy. Here’s a link that goes over it pretty simply…http://circ.ahajournals.org/content/110/3/e15.full
Factor 2 makes fibrin to make clots along with platelets. My factor 2 works kind of in overdrive.
There are some other tests that need to be done to determine how we’re going to treat this for future pregnancies. There are some liver proteins (called Protein S and Protein C) that need to be evaluated at the end of June (when the pregnancy hormones are out of my body). The most likely treatment for this issue will involve blood thinners during pregnancy to decrease the likelihood of clot formation in the placenta and umbilical cord.
The other genetic mutation is called MTHFR. We all have 2 genes that code for this and we get two copies of each gene, one from our mom and one from our dad. I have an abnormal copy and a normal copy of each set of genes, which makes me compound heterozygous for this condition. We have another blood test to determine if I have another complication associated with this condition and complicates the long term outcome for me. We will be looking specifically at my homocysteine levels. The higher the level, the higher my risk for cardiovascular disease, stroke, hypertension and neural tube defects in babies (none of my kids have had these). It is treatable with extra folic acid and another medication.
So basically it’s this…I have 2 heterozygous genetic issues that both can cause complications during pregnancy but can be treated if we know how severe they are. It also means that I could be prescribed a baby aspirin every day for the rest of my life and then get injections of blood thinners while I’m pregnant. I would also require closer monitoring during pregnancy. There are some hurdles to cross if we get to full term at the time of birth. Some physicians insist on an induction at 39 weeks (this can’t happen for me because I have had 3 c-sections), but a surgical birth isn’t the ideal option either.
There are more labs that need to be done to have a full picture of what we might be dealing with and how it will affect future pregnancy management. I have to wait until my body knows it isn’t pregnant before we can draw those labs. I am going to have those labs drawn at the end of June and then I will be referred back to maternal fetal medicine and also to a reproductive endocrinologist for evaluation.
It isn’t uncommon to have uncomplicated pregnancies and then be diagnosed with these issues afterwards when other complications arise. It does mean that I need to 1. lose weight (being over weight increases my risk of blood clots). 2. Not take hormones (birth control pills, hormone replacement) ever. 3. Decrease any cardiovascular risk I have (eat right, exercise etc).
The doctor also mentioned that I need to have my platelets (the other pieces in my blood that clot with the factor 2) checked to determine if I have an autoimmune disease called ITP (Idiopathic thrombocytopenic purpura). My platelets were normal in early pregnancy but abnormal when I was admitted to the hospital. It is possible that the ITP is only active during pregnancy OR that my platelets were used up making clots as part of the factor 2 issue prior to the losses (which is the most likely scenario).
So that’s what we know and what we don’t. The blessing is that it can be treated, although it complicates things a bit. The additional lab tests in a few weeks will give us more information and I’m praying that God will give my doctors wisdom and willingness to help me have as “normal” of a pregnancy and birth (Lord willing) as possible in the future. I had such and awesome homebirth the thought of not being able to do it again, makes me a little sad. I’m hoping that there will be some way to help it happen again.

May 18, 2012

Today is a significant day. Today was the day Knox was due. Today is also the day we found out our daughter Lillian Faith has died.
We have been praying for her from before her conception. We prayed fervently for her life, her growth and her soul. This week we were told she had a chromosomal defect called Turner Syndrome, meaning she was missing a sex chromosome. 99% of the babies with Turner syndrome die before they reach term. We were praying our daughter was in the 1% who survive.
We were hopeful because she wasn’t showing signs of distress, such as fluid build up around her organs or in her brain  and she didn’t seem to have heart dysrhythmias. We heard her heartbeat for the last time on Tuesday morning when Kerry and I listened together before he went to work.
I have “had a feeling” the last 2 days that something was amiss, but I dismissed it as paranoia and anxiety because I was approaching the same time in my pregnancy when I lost Knox. My very understanding doctor said I could come in any time to have heart tones checked and check on baby. I went in this morning while Kerry took the boys to the park.
We searched for the heart beat with the doppler initially and when we didn’t find it, we did a sonogram. There was our perfect baby, her only movement was with my pulse and no heart beat. My heart is broken. I feel so numb, so wronged and so empty.
We have elected to have an induction tomorrow morning. I could have surgery instead, but I want the opportunity to hold my daughter. I want the option to look on her face and not just an outline from a sonogram. My heart needs that. We ask for prayers for a quick, safe and uncomplicated birth. My birth with Knox was fraught with complications after he was born and I would like to avoid that again. I am also praying for compassionate nurses.
We don’t know medically why Knox died. We didn’t have chromosome studies (as we already had 4 healthy boys) and there was nothing obviously wrong after he was born. We know medically why Lillian has died, but it doesn’t make it easier. We don’t know why God has taken either of them, why we are walking through such sorrow. We don’t know any of it. But we have to trust that He has a purpose. I may not know it for years, I may never know why. But I believe God has a purpose. I believe that He knew the outcome of this pregnancy from the moment He created it, when He was knitting our daughter together in my womb.
My grief is deep, my pain is intense. I get angry at the injustice of it all. I am jealous of the mothers who will get to hold their babies today, while I will sit with empty arms for a second time in 6 months. It seems unfair, it seems cruel, it seems so very wrong. But we believe that God is faithful, we believe that He loves us and the children He has created. We believe that He will carry us through and give us strength.
I am reminded after Job suffered terrible losses of family and property. Job 1 20-22
20 Then Job arose and tore his robe and shaved his head, and he fell to the ground and worshiped. 21 He said,

“ Naked I came from my mother’s womb,
And naked I shall return there.
The Lord gave and the Lord has taken away.
Blessed be the name of the Lord.”

22 Through all this Job did not sin nor did he blame God.
 
 
 

Scattered

Very little of what I’m thinking and feelings seems like it can be put into a cohesive thought today. I find myself oscillating between grief and joy, fear and peace, being “okay” and crumbling in despair. I can’t quite make sense of it all and instead I’ve scribbled one liner thoughts today. I want to flesh them out a bit and make them make sense. To explore them and find out where they go in my mind. So instead, I’ll share some of the verses I’ve been reading and meditating on the last few days.

Psalm 18 : 30-31

30 As for God, His way is  blameless;

The word of the Lord is tried;

He is a shield to all who take refuge in Him.

31 For who is God, but the Lord?

And who is a rock, except our God.


Psalm 13:5-6

5 But I have trusted in Your lovingkindness;

My heart shall rejoice in Your salvation.

6 I will sing to the Lord,

Because He has dealt bountifully with me.

 

Lamentations 3:19-26

19 Remember my affliction and my wandering, the wormwood and bitterness.

20 Surely my soul remembers

And is bowed down within me.

21 This I recall to my mind,

Therefore I have hope.

22 The Lord’s lovingkindnesses indeed never cease,

For His compassions never fail.

23 They are new every morning;

Great is Your faithfulness.

24 “The Lord is my portion,” says my soul,

“Therefore I have hope in Him.”

25 The Lord is good to those who wait for Him,

To the person who seeks Him.

26 It is good that he waits silently

For the salvation of the Lord.

31-38

31 For the Lord will not reject forever,

32 For if He causes grief,

Then He will have compassion

According to His abundant lovingkindness.

33 For He does not afflict [j]willingly

Or grieve the sons of men.

34 To crush under His feet

All the prisoners of the land,

35 To deprive a man of justice

In the presence of the Most High,

36 To  defraud a man in his lawsuit—

Of these things the Lord does not approve.

37 Who is there who speaks and it comes to pass,

Unless the Lord has commanded it?

38 Is it not from the mouth of the Most High

That  both good and ill go forth?

 

Philippians 4: 6-9

6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.

8 Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. 9 The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.

 
Please continue to pray for our precious daughter Lillian. That she will live to be born at term (in November) with a healthy heart.

Her name

Long ago in a world far far away, when Kerry and I were dating we picked baby names. We knew we were getting married, we hoped for children and we had a long drive back to Manhattan from visiting home. The wedding planning was done, so we talked baby names.
We were married when we were 19 and our first son was born 17 months later in November. We used the first boy name we had on our list. Gabriel David was born on November 22, 2002. He was born 3 weeks early because I had a pregnancy induced rash that was miserable! He weighed 7 lbs 1 oz and was 20 3/4 inches long.

Two years and a day later our second son Otto Daniel was born on November 23, 2004. We took a little longer picking his name, in fact we hadn’t decided completely on it until the night before he was born. He was much smaller than Gabe at 6lbs 9oz and 17 1/2 inches long (our nurse and sister Kristi measured him 3 times to be sure). As our siblings got married and had children we hoped they wouldn’t us our girl name. In fact, I think it was kind of an unwritten rule that this name was “ours”…don’t touch it. 🙂

On November 19, 2008 we welcomed our 3rd son Ezekiel Jackson. He was our first “non-Kansas” baby and also our biggest at 8lbs 6 oz. After 4 years of not having an infant, we were delighted to be back in this stage of babyhood again.

Titus James is our “odd ball” not being born in November. He was born August 26, 2010 at home before the midwife got here. He weighed 7lbs 11oz and was 20 inches long. He had the most hair of all my boys. I should point out that ever since Gabe was born, Kerry had been waiting and wanting to use the name Titus. I joke I consented because I was running out of ideas after the first 3.

On December 3, 2011 we had another son, Knox Cornelius. We were blessed to be pregnant with him for 15 weeks. We anticipate the day we get to meet him when we go to Heaven. I have lost 2 other children early on in my pregnancy, one in October of 2003 and one on November 15, 2009.

After waiting for over 10 (almost 11) years we will get to use our girl name. Our daughter’s name has special meaning to us. She will be named after Kerry’s Grandma Plett who died in Spring of 2007. She was a special lady and had such faith. We celebrate her and the legacy she and Grandpa Plett passed on in their family. The love, faith and trust in God. The love shared. Our daughter’s first name will be Lillian. I should note here, that we generally do not share names before our babies are born simply because we don’t want to invite commentary. However, we want to share her name now so that you can pray along with us for our daughter by name.
Her middle name will be Faith. We have relied on God for this baby, we have trusted Him and we have praised Him. We rejoice, but with the diagnosis we received this week I find myself needing the faith so much more. Faith that God will help us navigate this path, faith that He won’t bring us to anything we can’t handle.

God is faithful, He will do what He says He will do, He will be with us every step of the way. I trust that God has a purpose for this journey, even if I don’t know why. I know that God has knit this baby together in my womb for our family. He created our daughter for us to care for and love, for however long that may be. I still struggle with fear about what lies ahead for us, I still struggle to understand, but I have to give each of those things to Him. He knows and He helps.
Thank you God for our daughter Lillian Faith.

How you can pray for Lillian today:

  • Pray that she will be born alive and at term (in November)

  • Pray that she will have a healthy heart and won’t have any heart defects

  • Pray for peace and understanding for me

  • Pray for wisdom for the doctors

Lamentations 3: 19-26

19 Remember my affliction and my wandering, the wormwood and bitterness.

20 Surely my soul remembers

And is bowed down within me.

21 This I recall to my mind,

Therefore I have hope.

22 The Lord’s lovingkindnesses indeed never cease,

For His compassions never fail.

23 They are new every morning;

Great is Your faithfulness.

24 “The Lord is my portion,” says my soul,

“Therefore I have hope in Him.”

25 The Lord is good to those who wait for Him,

To the person who seeks Him.

26 It is good that he waits silently

For the salvation of the Lord.

1%

Our baby has a 1% chance of survival in utero. If she makes it to birth, her prognosis is actually fairly decent with good medical care (for things like hypertension, hormone replacement and osteoporosis as she gets older).
It’s amazing how much that 1% means, and how much it changes perspective.
When I had a home birth after 3 c-sections almost 2 years ago, there was just under a 1% chance that my uterus would rupture. I was comfortable with those odds. I didn’t think the 1% would apply to me, we were in the 99%.
When we elected to have the CVS test last week, there was just under a 1% chance that the procedure would cause the baby to die. We were okay with those odds, especially after we saw the position of the placenta and the baby. We were in the 99%.
We got the phone call yesterday that our baby has Turner syndrome. She is missing all or part of a sex chromosome. We were told 99% of babies with Turner syndrome die before they reach term, most of them die by 26 weeks gestation. We are praying for the 1%.
I am a bit fearful though. What if I prepare for the 99% and she is in the 1%, what if I spend my whole pregnancy expecting her to die and she doesn’t? Will I still bond with her? On the other hand…what if I prepare for the 1% and she is the 99%? I’m not sure I can handle that sinking feeling emotionally and that shock that would come. The thing is, we don’t know.
It’s all about perspective isn’t it…that 1%? The 1% is easy to push aside when we’re hoping for the 99%, but for us…I am begging, clinging and praying for the 1%.

For those who have been asking you can specifically pray for the following:

Pray for a live term birth for our baby (we want to be the 1%).
Pray for a healthy heart for our baby.
Pray for peace for me as I am struggling right now to make sense of this all.
Pray for wisdom for our doctors.

Psalm 31:22-24

22 As for me, I said in my alarm,

“I am cut off from before Your eyes”;

Nevertheless You heard the voice of my supplications

When I cried to You.

23 O love the Lord, all you His godly ones!

The Lord preserves the faithful

And fully recompenses the proud doer.

24 Be strong and let your heart take courage,

All you who hope in the Lord.

 

Our diagnosis

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.

1 Peter 5:6-7

6 Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, 7 casting all your anxiety on Him, because He cares for you.