Starting out

I'm starting this blog to keep family and friends updated as Christian and I go through the remainder of my pregnancy with John and Sam. (For anyone who doesn't know, I am 20 weeks pregnant with twin boys.)  I am also blogging, instead of emailing, in the hope that I can bring comfort to someone who might be in a similar situation now or in the future.  Over the past 10 days I have spent much time on the internet and the thing that has brought me the most comfort is reading the blogs of moms who have lived through losing their newborn. Some of these blog posts are from 5 years ago but their words are still ministering to hearts.  I've titled my blog "Wonderfully Made" to remind myself and others that although John has a fatal diagnosis and will be born with defects, God promises that he is "Wonderfully Made" and was crafted with deliberate care.

 On August 3rd, 2012 I sent the below email to our closest family and friends:

I'm sorry to do this through email but I cannot call each of you personally and I need my prayer warriors.  I know each of you have cared for my twin boys since they were just embryos so it is with a very heavy heart that I have to share this news with you.

Today we found out that "Baby A", John Kay, has Thanatophoric Dysplasia.  It is a lethal form of skeletal dysplasia.  Babies with TD usually die within an hour of delivery.  I was told that John would live minutes, maybe hours on the day he is born.  "Baby B", Samuel Christian, is healthy, doing well and should not be affected by John's condition. 

We were given two options today: to stop John's heart so that he doesn't cause preterm labor and take up 'living space' for Sam or carry on with the pregnancy.  I could never kill one of my babies so the first option is not an option at all.  Christian and I will do everything in our power to carry these boys as long as possible.

My family needs your prayers more than ever.  We have a lot of difficult decisions to make and I can't even pretend that I know what we should do. An amnio has been suggested but it increases the risks on both boys and would only give a 100% diagnosis of the type of skeletal dysplasia.  The doctors are 95% sure it is Thanatophoric Dysplasia but if it's not, the other types that it could be are just as lethal. We don't want to add any risk to Sam or John so I don't think we are going to do it.  We are still praying through it though.

Please pray specifically that I do not go into preterm labor, as many carrying TD babies do, as that would put Sam at risk. Please pray that Christian and I are able to maintain joy and happiness for Maggie's sake and that our marriage is only strengthened by this.  Please pray that John knows how loved he is and that he has a peaceful and comforting time with his brother in my belly for the next 4 months.

We know that everything happens for a reason and that God does not give us more than we can handle. I am comforted by the thought of my Granny waiting to hold John in her loving arms and proudly show him off in Heaven. I am desperately looking for ways to praise God in this storm and verses from Psalm 139 have given me moments of comfort today:

You made all the delicate, inner parts of my body
    and knit me together in my mother’s womb.
¹⁴ Thank you for making me so wonderfully complex!
    Your workmanship is marvelous—how well I know it.
¹⁵ You watched me as I was being formed in utter seclusion,
    as I was woven together in the dark of the womb.
¹⁶ You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.

Thank you for your prayers for my family.
Love, Krystle

 On August 9th I updated our friends and family again. Below is a part of that email: 

We had an appointment with my OBGYN, Dr. U this morning. From now on I will see him and my perinatologist, Dr. B, once a month.  The appointments will be staggered so that I see one of them every two weeks.  Dr. B will monitor the twins and their development and Dr. U will be in charge of my care and making sure the pregnancy stays as safe as possible.  Dr. U has performed three of my surgeries, delivered Maggie and is a trusted friend.  He will deliver Sam and John as well and I feel comforted by that. Sam and John both had strong heartbeats this morning. Sam is more active in the mornings and John likes to kick at night but they were both moving around at the doctors office. Many women who carry TD babies end up getting polyhydramnios (too much amniotic fluid) but both Dr. U and Dr. B say I'm not at risk of this yet. This is good news!  Dr. U also feels that if I do develop polyhydramnios that he will be able to safely reduce the amniotic fluid or use meds to slow it down so that I can carry Sam as long as possible. Christian's main concern has been preterm labor and I think he felt better after hearing about all of methods Dr. U has to stop preterm labor if necessary. Dr. U gave me a prescription for Ventolin that I am supposed to take if I feel any contractions.  Christian asked about bed rest and Dr. U said that he's pretty sure I'm heading in that direction.  He said "late-20's or early 30's" and I'm almost 20 weeks now so I hope I have at least 6-10 weeks left on my feet.  

Christian and I have decided not to do the amnio. We do not want to increase the risks on either of our boys and it would not fix or solve anything.  Both of my doctors agree and say that as the next few months pass, John's condition will become more and more evident through sonogram. We have a meeting with a representative from Hand to Hold tomorrow. They are a nonprofit that offers all kinds of services to women who have fatal prenatal diagnoses, women who suffer unexpected loss and women who have babies in the NICU.  We've been told that they are very helpful in discussing birth plans, palliative care, offering suggestions on the best way to spend time with John and helping with funeral arrangements.  These meetings are difficult but I feel more relaxed after knowing exactly what to expect. We still have to talk to the head of Labor & Delivery and Neonatalogy at our hospital but at least we now know who those people are and what questions to ask them.

At my Granny's funeral Pastor Kim said that she once comforted Granny by reminding her that God knows what it is like to lose a son. I remind myself of this daily and pray for Granny's strength and wisdom.  I know God holds all the tears I've cried in the palm of His hand and that there is a reason for all of this. I'm just very sad for my baby.