Be still and know…

Tuesday, April 9th I went in for my anatomy ultrasound at 17 weeks 5 days. This ultrasound is the “big” ultrasound to look at organ development and gender. I am going to try to summarize the ultrasound findings and then I’ll include the ultrasound report from the doctor toward the end of the post.

To summarize the last ultrasound I posted on the blog, we saw severe scoliosis (curved spine to a 90 degree angle), abdominal contents outside of the body through a large defect in the abdominal wall and abnormal placement of the heart outside of the chest-possibly in the abdomen. All of these findings are pretty much the same at this recent ultrasound. The baby was in a very difficult position to assess for some of the anatomy because of the curvature of the spine and the fact the baby was lying with the heart facing toward my back. The spine remains incredibly curved toward the right side of the body, however there doesn’t appear to be a defect like in spina bifida. The abdominal contents (stomach, intestines, liver, spleen) remain outside of the body through a very large defect in the abdominal wall encased in a membrane. We found one kidney inside the body and one kidney possibly outside of the body through the defect. There appears to be one functioning kidney as there is ample amniotic fluid and a normal bladder. The heart structure was difficult to assess, however there appear to be 4 normal, symmetric chambers. The heart is also partially outside of the baby because there is a defect in the chest wall. That was a new finding today. Another new finding is the fact the baby is basically tethered to the placenta due to the short umbilical cord. This leads the doctor to believe the baby has some form of short umbilical cord syndrome. There will be no definitive answer to what the baby has because the baby doesn’t fit any mold as far as diagnosis go. The doctor said she is more concerned with what she sees on the ultrasound than she is with a correct diagnosis. She said what she saw Tuesday is more concerning than the last ultrasound.

The good news is that we can see some lung tissue, the heartbeat is strong, there is ample fluid surrounding the baby and the brain, face, legs and arms appear normal. The bad news is due to the amount of organs outside of the body and the lack of organs inside the body, this will probably not be compatible with life outside of my womb.

When we talked with Dr. Boyd, she explained to us that we would still have the opportunity to discuss birthing outcomes with pediatric surgeons. I was relieved to know that it won’t be Josh and I making the call of resuscitation or surgeries. We would tell the surgeons in advance that we would like them to continue resuscitation or surgeries as long as it will prolong life and not cause pain or extend death. I wouldn’t know where to draw the line of continuing treatment or saying enough is enough. How can you do that as a parent? Thankfully, Dr Boyd told us the baby and the pediatric team will make that call. There is still a very high risk of stillbirth or demise in utero. Either way, we chose to have a C section to help sustain any life we can for her and so that we could hold her with or without a heartbeat. This is verbatim from the ultrasound report if anything I said above isn’t clear:

Again noted is a large complex ventral wall defect. Fetal intestines, liver, stomach, and a portion of the cardiac apex are contained within this defect, and are seen free floating in echogenic fluid in a membrane enclosed sac. One kidney is visualized within the fetus; the other appears to be exteriorized. No pelvicaliectasis is seen. Bladder is located within the fetal pelvis. A paucity of cord loops is noted within the amniotic fluid, and with color Doppler evaluation, a very short umbilical cord is seen extending from the placenta to the area of the ventral wall defect contents. The fetus appears tethered near the placenta, and does not move freely about the amniotic cavity.

Angulation of the fetal spine is again seen, with approximately 90 degree curvature in the area of the distal thoracic region. Although marked scoliosis makes assessment of the vertebrae more difficult, there is no overt sign of an open neural tube defect or sacral agenesis/dysgenesis.

Assessment of umbilical artery number is limited by fetal position and short cord.

Evaluation of the heart is limited by fetal position and partial exteriorization of the heart. 4 chamber view appears symmetric. Outflow tracts could not be adequately assessed.

Genitalia appear most likely female.

Fetal extremities appear unremarkable, including foot position. Visualized intracranial anatomy appears normal.

Findings were discussed. Large membrane enclosed ventral wall defect with partial ectopia cordis can be associated with pentalogy of Cantrell as well as with conditions such as body stalk anomaly/limb body wall complex. The short umbilical cord and presence of severe kyphoscoliosis are more consistent with limb body wall complex. The lack of apparent limb/cranial/face involvement is less consistent with limb body wall complex. We discussed that if this does represent pentalogy of Cantrell, it is at the very severe end of the spectrum. Given the very large size of the ventral wall defect, presence of markedly short umbilical cord along with presumed diaphragmatic defect (based on finding of ectopia cordis) and severe kyphoscoliosis, appearance is most consistent with lethality. We discussed increased risk for intrauterine demise, but also discussed that the fetus may remain viable in utero, in which case Ms. Shrader and her husband would like to have a pediatric team available to assess the neonate and to determine whether rescucitation efforts would be possible. Ms Shrader confirmed again today that she would not want to intervene with termination of pregnancy even for a lethal fetal condition.

If you caught it in the last paragraph I typed, good eye. We found out Tuesday baby Shrader is a girl.

We decided to name her Cora Kimberly. Kimberly is my mom’s name and it was an automatic as soon as we found out the gender. One of my mom’s dying wishes was to be a grandmother and I want to honor her. Cora is just a vintage name we could both agree on.

Here are some pictures I grabbed myself the day after our big ultrasound. From here on out I will post ultrasound pictures that show Cora’s beauty and not necessary point out what’s “wrong” with her. I tried to avoid pictures where you can see the organs and such outside of the body and focus more on her face and limbs. You can still see in some of the pictures, the extreme curvature of the spine forcing the legs to point off to the right side of the body:

SHRADER_9

SHRADER_8

SHRADER_6

SHRADER_4

SHRADER_2

SHRADER_10

As you can probably tell, this is not the news we hoped and prayed for. That is ok, because God is greater than I am. We have resigned to celebrate Cora as long as her heart is beating and grieve after it’s not. This news hit me a little harder than the last ultrasound because the prognosis is much more grim. We don’t have a lot of hope in the medical diagnosis but I am still aware God can perform miracles, so we’re praying for those. I am currently reading through the book of Job to remind myself that God is sovereign and I may never get a satisfactory answer for Cora’s suffering. Job was considered “blameless” and “upright” but he suffered many calamities losing his children and his livestock. His friends convinced him that his sins caused his pain and punishment by God, when in reality Satan was attacking Job to try to seduce him into denouncing God. God never answers the question in the book of Job about suffering in this world but does reassure us through Job’s story that He is sovereign and we must put trust in that and not in figuring His plan out for us.

“I know that you can do all things;
no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
Surely I spoke of things I did not understand,
things too wonderful for me to know.”

Job 42:2-3

God gives us obstacles and blessings in our path without our knowledge of when, what, how or why. God has shown me before that He certainly works all things for His glory and for our good. I have learned to trust Him through past experiences with grief and I will learn from Cora’s story. Please help us celebrate Cora’s life now and grieve with us if she passes later.

In Him,

The Shraders

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Helping Others Grieve

A very dear friend sent me Casey Chappell’s blog of her son Asher because her story is very similar to mine (complicated pregnancy with a poor prognosis and A LOT of uncertainty). You can read Asher’s story here: http://www.caseychappell.com/my-entrance-into-motherhood-and-the-journey-thus-far/

I came across her blog post about grief and how to help others grieve. Her entire blog is helping me through this situation, which is one of the most difficult of my life. I don’t know how to handle it myself, much less help other people handle being around me. I have had many different reactions to the pregnancy, but most end up saying things such as “I don’t know what to say/do or I’m so sorry/will be praying for you”. All of these reactions are completely normal and don’t affect me negatively in the least. I have had a lot of people ask me if they can bring us meals or do anything for us. I honestly am at a loss because I don’t know how to tell anyone to help. Josh and I will probably need the most help when the baby comes as he/she will spend many months in the hospital for surgeries if he/she survives.

I have already been through a time period of grief with my mom’s passing and am a “seasoned veteran” on how to deal with other people’s guilt or miscommunication. I have had some people say/do slightly inappropriate things trying to help. Heck, I’ve certainly done it when other people are grieving. It’s just hard to know how to help.

I have had some amazing people helping me with my pregnancy and how to tackle my own feelings head on. I have a friend that texts me scripture every single day without fail. She doesn’t pretend to know the best scripture to fit every situation, but she is consistent and unknowingly helps me get through the day. I have incredible coworkers who have helped me through some incredibly hard days surrounded by joy/heartache of other people’s pregnancies while going through my own (for people who don’t know, I work in a high-risk pregnancy center performing OB ultrasounds). My coworkers gave me a Celtic mother/child necklace that I wear almost every day and it helps me feel like a “normal” mother going through a pregnancy. My sister-in-law told me when I first told her the pregnancy complications that no matter what I will always be a mother to this child and I have a right to celebrate this baby’s life. At this point in my pregnancy when I first got the bad news, I almost felt that I shouldn’t celebrate this life inside me because I don’t know how many days I have with him/her. I have started a prayer wall at my house with the cards I have gotten from family and friends. Knowing there are so many people praying for this little life gives me much comfort.

I have really awesome days where I feel like I can tackle anything. I also have days where I feel like I’m going to fall apart. These moments come upon me suddenly and I can’t predict them. My friends and family will just have to forgive random outbursts of crying, anger or silence when I am around amidst the joy I emit. Some events are harder on me than others: baby showers, family gatherings, work, etc. I know Josh has some of these feelings, even if he’s not willing to admit them publicly, so please don’t forget him. Men are definitely forgotten in the difficult pregnancies because people focus on the women and babies. I have heard this from many friends who have shared with me their miscarriage/loss experiences.

The point I’m making here is that no matter what situation someone is going through with any type of grief, this blog post from Casey will help friends and family get them through the rough times. It’s best to try to be understanding that not everyone grieves the same way. Whether you know or not, what you say or do can help someone grieving have a better day just by the simplest act of kindness. I hope to be a better friend when I know someone else is grieving to let them know they are not forgotten. I want to post some of my favorite tips from the blog below. You can read the full blog post here: http://www.caseychappell.com/reflections-on-my-journey-of-grief-helping-others-grieve-well/

Ways to socially help a grieving friend:
  • Offer them concrete times when you can get together with them and concrete things you can do together. Getting together to just talkmight be just what ends up happening but the thought of going to do just that can be overwhelming for the hurting heart.
  • I’ve had a few people who just happened to be at the right place at the right time and they were the “lucky ones” that I fell apart on. Those are moments I’ll treasure forever and I think they are often divinely planned from God. But just because someone needs you at a given time doesn’t mean they will in the future in that same way. In other words, you may bond during that one moment or crying spell or talk but that may just be your moment together and it may never happen again. Don’t think that you need to recreate moments or times together for continued bonding or grieving. Just be willing to be used of God when He plans those moments and remember them. Just like I have to thank Him for that unexpected person He put in my path and will be blessed because of that moment of loving care for my heart.
  • As for you BFF’s out there, Let them turn you down or tell you no many times. Don’t give up on them. It may not be the right time but that time may come and you want to be there when it does. I had a close friend who called me and called me and left messages and emails and for weeks I didn’t respond because I didn’t have the strength to at first and she totally understood and said that each time she called. But when the time was right I was ready to spend time with her and it was so good knowing she was there waiting for me when I was ready!
  • If a phone message doesn’t get returned, try email. That can be something a person can respond to when the time is right and she has something to say or has processed your email. And if the email doesn’t get returned don’t give up just email again and remind them… I don’t mind being reminded… seriously. Sometimes my phone or email inbox is completely overwhelming so it ends up paralyzing me and I don’t deal with the emails I need to write or phone calls I need to make and sometimes I just forget altogether. When I look at the way I’ve neglected some, then the thought of catching up seems too much… ughh.. it drives me crazy. I drive me crazy. maybe this will help you understand more.
  • At first especially, be consistent. Don’t assume everyone is jumping in to be there at first or that you wouldn’t be needed even if everyone was. Those first days and weeks are essential to be a part of if you at all can. One friend came over every wednesday morning (which was her free morning of the week and I know it was such a sacrifice) and she was very faithful and then after a while she and I both knew she needed to do some things for her family during that time and I remember crying the first wednesday she couldn’t come. But she did call and for weeks did so every wednesday. But her consistency in the process helped me know one day from the other in the beginning… because at least I knew that was wednesday and she and I and a cinnabon roll would get time together. Thanks Becks!
  • Send a card. It was so helpful to have actual notes of support and love waiting in our mailbox each day for weeks. But now, it’s back to bills and magazines. Now, that’s just life. I know that. But for example a few weeks ago I got a card from a good friend at church who had a baby near the time I did and she just shared how she felt as though she grieved with me from a distance and that she wanted me to know that she was there even though she wasn’t physically there. That meant the world to me. And it was still timely and nurturing. ***** now, I’m not writing all this to say everyone needs to write me or love me a certain way I’m just helping process this while some of it is really fresh so that we might love better and I will remember this for others who will come into my life hurting!
  • Admit your awkwardness with the situation or admit your false guilt. some of the most precious moments came when new mothers would cry and tell me they feel guilty for having healthy babies or healthy grandbabies when I didn’t. We both knew that there was nothing either of us could do or not do to deserve healthy or not healthy babies but that it was in God’s hands. But just being that transparent was so good for the friendship and for the freedom to bring their babies around me knowing I knew what they were feeling.
  • Know that certain gifts will mean so much even if you never know it. The gifts that were given to asher during his life that were ones given expecting him to live are so precious to me! The ones that were more memorbilia in nature are a little harder to love because they can scream death, even though I know they will grow precious to me over time. So, those of you who have friends will difficult pregnancies or have been given grim diagnosis… give them something that screams life and normalicy. Buy clothes the child may never wear. Buy stuffed animals the child may never hold. Make quilts that the child may never need the warmth of. Those are so precious to me to this day!
  • It will be the strangest acts of kindness that mean the most. I remember a few close friends and family asking to see Asher in his homegoing box and that was such a strange request to me right then..(especially being my first experience with death and burial) but today those people are endeared in my heart SO much,! a fatherly kiss on the head, saying they love us. You will have moments with your hurting friend and you may not think it was much or that those moments need to keep happening but God used you in a flash of time to help them heal and provide comfort and love. sometimes that has to be enough for right now.
  • As a blog writer…. Please don’t ever tell someone that their story or blog posts are just too sad for you and that because of that you can’t go there to read what they have written. I mean, seriously. My life… is too sad for YOU? I want to say “try being me”. I know it takes energy to be a part of someones life and even to look into a window of their pain and I of all people know that sometimes we don’t have the energy to handle a big cry-fest every day. But turn off the music if you have to. Read it just once a week. Or if you know you are going to be seeing them take a few minutes and read what they wrote most recently. Stay connected that way if they have put themselves out there. My closest friends are the ones who read my hearts cry on here week after week. Some strangely enough are women I’ve never even met.
  • Try not to tell them or think you know what they can or can’t handle in their life right now. In some areas I am ready to take on the world and in a sense we did when we brought Zoe into our family. She’s been amazing for me and has given me something concrete to focus on and she gives so much back!! But as mentioned before other areas, which might seem like nothing compared to adopting a baby might prove too much to handle at this time. It’s strange. But hurting hearts are looking to survive and they will know what they can handle or not, or they will soon let you know if they can’t. Just be there for them as they welcome or buffer the things coming into their worlds.

But here are some of my favorite ways practically that people have served and loved on me by doing:

  • They Celebrated Life! This first one is for those who find a friend in a situation where they don’t know if they will be experiencing losing a child but have been presented with the possible reality of it. CELEBRATE LIFE!!!! So, those of you who have friends with difficult pregnancies or have been given grim diagnosis… give them something that screams life and normalicy. Buy clothes the child may never wear. Buy stuffed animals the child may never hold. Make quilts that the child may never need the warmth of. Those are so precious to me to this day! Have showers! Don’t ignore the difficulty and even include a time of prayer at that shower. I can’t tell you how blessed those times of prayer were and still I know are seeing God answer and fulfill even months later. If you don’t know what to say, that’s okay just be there. God will often have women who have experienced loss or who have the gift of encouragement there as well and let them say words that God wants the hurting mommy to be to hear. Friends have different gifts and just let God use your gifts where they fit best in this time of hardship.
  • They came to the hospital. That was probably really hard for some because what do you say? what do you bring? there is no baby to see and awe over. It can even be downright awkward. But COME anyway! The first few days I don’t remember much. But I know there were friends there to talk and laugh with Dan and even relieve family members from having to stay all the time. Some might say not to stay long, but I say just play it by ear. If you’re needed and conversation is flowing stay! but if they seem tired and preoccupied and decisions are being made then love on them for just a bit.
  • They prepared for my coming home. Oh, those dear friends who cleaned my house that week for me. We left in a tizzy when going to the hospital so I know it was a mess. But it was sparkling when I got home and the front entrance was decorated with bright yellow mums! I love mums in a special way now because I had a cheerful front door to go into those first few weeks!
  • They brought meals. This was a little hard for me especially after having the recent experience of finding out what it’s like when there is a new baby in the home. But while it was such a blessing not to have to cook or figure out what to have for dinner, it was difficult because there was no baby to show off when people dropped by and sometimes I wanted to talk and sometimes I didn’t. Mostly I didn’t. Also, Dan and I had requested healthy meals as we were trying to eat better.. but we found out really fast we wanted comfort foods as well! It was nice to have a balance of casseroles that were so amazing and fresh foods that were great for us. Here is a MUST READ when it comes to bringing meals to friends!
  • They got me out of doing dishes! One thing that a friend did was bring us paper goods. Paper plates, plastic cups, napkins. SO HELPFUL! because I did not want to be doing lots of dishes.
  • They helped start my day off right! My mom made meals and froze them for us and we are still eating them. She also bought breakfast stuff for us. I had weeks where I had yogurt parfaits every morning (that I made in the plastic cups) yogurt, granola, and frozen berries, so easy and good for you. She kept those three items stocked for me for a few weeks. I never would have thought to make those or buy that stuff but she did and it was very helpful to start off my day right.
  • They just came over! Okay, I know I just said I wanted to be left alone. But if you are a Best Friend of someone and feel like they can be honest with you about their needs, Then go over all the time!! Every night for a while three of my best friends (who just happen to live next door) came over… And often due to the generosity of the meal makers we were able to share dinner with them as well. The good thing about going over often is that you’ll be there in moments when they need to cry and fall apart and you’ll be there when they just want to talk or vent and you’ll be there when they laugh and need something to watch. (because this was a regular happening it wasn’t inappropriate when they wanted us to see a funny you-tube video they had seen that day. those moments were so needed!)
  • They put Scripture before me! A few friends wrote out scripture verses out and made them decorative and gave them to me to put up around the house. Those are still verses I see daily and are still claiming their promises in my life.
  • They did the little things that nobody thinks of. From returning videos to getting me stamps for letters to seeing if I needed anything at walmart, friends included all the little things that needed done into their daily errands! It was so helpful!!!
  • They took care of my dog! Having a dog during this time was so healing because he was so sensitive and loyal to my side those weeks of being at home. He knew something was wrong but just stayed close to me. I had a friend send him a care package. (thanks sara) Yes, I know, maybe that’s over the top to some of you. but I hadn’t had the chance to get him something to play/chew on in some time. And then add to that friends who wanted to walk him and get him out of the house and give him attention. (kids coming over during that time was great for him) It was a blessing to have them care for a dog who was in a way caring for me
  • They wrote thank you notes! this has never been my strong point and leave it to family to pick up where you lack. My family showed their gratefulness on my behalf to those who served us endlessly and without much notice by writing them cards. I often have wondered how I’m ever going to personally thank everyone who helped us during this time and please know that my heart has captured you in special places and I know some many of you deserve a hand written note from my heart and I hope that I have the opportunity in the months/years to come to tell each of you how much you mean to me. But if I don’t know that you are treasured in my heart. Know that!
  • They remembered Asher. During special day or even just random days they would call or email and just in tears say they were missing him then. Oh beloved that meant the world to me… still does. Sometimes they sent/gave gifts that had his name on it or his birth information displayed for me to remember. Memorial gifts were so special. I have pieces of jewelry that whenever I wear I remember him and it’s strangely healing.
  • They cared for my well being. Even though I had no baby to care for I still found it hard to get a shower and fix my hair. The last thing I was thinking about was getting a haircut or having my nails look nice. But ladies, it’s all connected! I was taken to get my nails done right before Asher’s service. what a blur but that was an element I didn’t have to think about. I was treated to a haircut and afterwards I wanted to fix my hair and at least try to look nice. It was helpful in the process of starting to feel a little more normal. I’ve had friends who have had miscarriages and this element is really important. Giving them a basket of body washes and beauty supplies I know blesses during this time of just bodily pain and discomfort and allows you to be a part of this very personal and often private pain and loss in their life.
  • They loved my husband and let him grieve! I asked him the other day if he talks about asher much at work and he just really said how God has blessed him with co-workers who aren’t afraid to talk about Asher and his birth and death. He said that the people God has put in his life there have been so encouraging and just have been his friends through this. A lot of my best friends are some of his closest friends as well and they really loved him well and laughed with him! I think all the funny you-tube videos did him the most good. As a teacher, nothing makes him more proud than to see growth and God in his students. They have showed so much maturity through this and have gone the extra mile in taking care of their Mr.Chappell. Thanks guys! I know Dan is blessed to have you in his classes. Thanks NRCA parents, for letting your children go to the memorial service knowing that you might have difficult questions to answer afterwards.
  • They took me away. At six weeks some of my closest friends decided I needed to get away and planned a trip to Washington D.C. and made it clear I was to go with them! I agreed to go and honestly up to about an hour before I was in constant flip flopping over if I was going to really go or not. I kept telling Dan I’m not going to go… but I should go… I just can’t… but I want to… ughh! But I did go. And I’m so glad I did. It was beautiful and it was an easy trip that didn’t overwork my body but still made me move and get out!
  • They gave me books and movies! Movies and books were a great mental stimulus and getaway for me and I was given some great books that were great reads but also encouraging. many of them are in the side panel of the blog in book recommendations. And some gave us movie gift cards that let Dan and I get out of the house and escape into worlds of spies, romance, heroes, triumph and so many more. It was helpful for us both!

As you can see there are SO MANY ways to help and serve and love! These are just some of the countless ways that I have been blessed by those in my life.

I have already been blessed by so many. Thank you to those that have been there for me and will continue to be. This blog post was just a general helpful tool for ANYONE going through grief and how their friends can help. Everyone has been asking me “how can I help, anything I can do?” This is my best explanation to those questions.

In Him,

The Shraders