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.