Tag: new baby

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.

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.

 
 

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.
 

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.