February 21, 2011

Chubby Cheeks and Hand Sucking

The ultrasounds are weekly now, so there's not a ton of change week to week.  I'm not sure how much longer we'll be able to even get a glimpse of her face without it being too smooshed.  Here are some shots from last Friday (34 weeks, 5 days):

A serious thumb sucker, just like her mama was


I wish I had video of this.... her entire hand in her mouth and we could see some serious sucking action.  Kathy said she might come out with blisters on her fingers from sucking on them so hard...

The "unofficial" weight measurement was 6 pounds, 5 ounces.  I hardly ate a bite last week (that I kept down) because I have been fighting the nasty-winter-school-crud and had actually dropped four or five pounds myself.  I was a little worried about Clara not getting any nourishment, but apparently, she's just fine because she managed to still put on a pound (give or take, of course....)  Your prayers for a big baby are being answered!

February 20, 2011

This I Believe

Last week I was on the schedule to share a devotion with the rest of the Deacons of our church. Not knowing where to begin sharing with a group who for the most part have ten to fifty years of life and living ahead of me, I just sat down and began writing our story of the past few months. Robert then joined me on Wednesday as we shared the story with the rest of the congregation. For those of you who have joined this blog somewhere along the way, this may be a good “catch up” of our story, as well as an opportunity to see some of what I have distilled from this experience. For those of you church members who have asked for copies of it – here it is. I hope that it serves as an encouragement to you and a reminder of what a Good and Perfect God we serve, even in the midst of crisis.

Many of you have battled heath crisis yourself, lost parents, siblings, children or spouses and faced other devastating news. You know that these are the experiences that shape us, that make us who we are, that define our faith and that teach us how to understand our God even better. Here is our story.

In July, Robert and I took a special trip to Ireland to celebrate our second wedding anniversary. We came home with a really special souvenir – we found out shortly thereafter we were expecting our first child. Some of you have known me all my life and you probably remember me as a toddler myself carrying around baby dolls and pushing strollers. I have wanted to be a mother for as long as I can remember and have such strong maternal instincts that my friends in high school and college used to even call me “Mama Chrissy.” We were both filled with joy and excitement and the typical anxiety and nervousness that comes with knowing your life is going to change forever. In August we shared the news with our families and close friends and by October there was no hiding it from anyone that a new addition was on the way. On Thursday, October 28, we went for our routine 18 week ultrasound and to find out the gender of our baby. The sonographer told us we were having a girl and I squealed in delight. We spent about thirty minutes flying high on this exciting news before the doctor came in to give us more news and the “other shoe dropped,” so to speak. They had found on the ultrasound what they suspected was a diaphragmatic hernia – basically a hole in the diaphragm that has allowed the stomach (and sometimes other organs) to migrate into the chest cavity. We were immediately referred to OB specialists at Forsyth Hospital for a level 2 ultrasound and more tests. The following Tuesday we went to Forsyth Hospital filled with trepidation, but still hoping for the best. Perhaps it was a misread, maybe it was just a small stomach bubble, hopefully this will all resolve itself and be nothing. The sonographer was quiet while she took her scans and when the doctors came in to talk with us after this test, the news was grim. Not only did she have a diaphragmatic hernia, it appeared to be very severe and was accompanied by several other “soft indicators” that led them to believe we were probably facing a chromosomal disorder. They talked to us about Trisomy 18 and Trisomy 13 and threw around phrases like “stillborn,” “little to no chance of survival,” and “termination.” They encouraged us to have an amniocentesis done to find out for sure what our baby had.

Robert and I left that day at our lowest point in our lives. We spent the next forty-eight hours just crying and holding each other and trying to wrap our minds around what we had been told. Our regular OB is also a good friend and she came to our house the next day to talk with us more and answer our questions once the dust had begun to settle a little. She also pulled some strings and got us in very quickly for several appointments. The next few days were a blur of tests: amniocentesis, MRIs, consults with pediatric surgeons and cardiologists and neonatologists. Our medical vocabulary expanded exponentially as we sought to learn and understand as much as we could about our baby girl.

By Friday of that week, the tide had started to change a little. Our amnio results came back and showed no chromosomal abnormalities – eliminating the sure death sentence for our child we thought we had been given. The MRI showed that while the diaphragmatic hernia was certainly present, and her stomach and bowel were in the chest cavity, that there was a surprisingly significant amount of right lung tissue. The pediatric surgeons and neonatologists at Brenner’s explained to us the course of treatment for babies with this condition and helped us learn that many do survive and go on to live normal and healthy lives. The national survival rate for babies with CDH (Congenital Diaphragmatic Hernia) is only about 50%, but the rates are a good bit higher at Baptist – somewhere between 70-80%. After staring at 0% and trying to come to terms with this, we truly felt like we had been given her life back with incredible odds.

We’ve spent the months since November trying to adjust our expectations. We know that right after she is born at Forsyth Hospital she will be intubated, stabilized and transferred to Baptist. Sometime after that, she will face surgery to repair the hernia and will hopefully be able to wean off of the breathing support and medications in order to come home soon. Hospital stays for babies with CDH range from 3-4 weeks to 7-8 months. One of the challenges of CDH is that there is no good way to predict prior to birth how babies will do. Some with severe hernias defy all odds and make it and some with significant lung tissue fail to be able to breathe and oxygenate blood well enough to survive. We don’t know how our girl will do, but we remain extremely hopeful and optimistic. She comes from a line of stubborn fighters and we hope that she will be filled with a tenacious spirit that fights through the first weeks of difficult times in order for us to bring her home safely to begin our lives together.

I tell you this story so that you will know the backdrop for some of what I am going to share next. Each person’s faith is developed not only through study and worship and discussion but through these types of life experiences that color the way we understand ourselves, others and God. I don’t claim to have any more answers now than I did six months ago about the complexity of our Creator, but I do feel like I have personally deepened and changed some of how I view our calling and relationship to Him. Here are a few of those things:

1) I believe that God is good. I believe that God is our Creator and Sustainer and that he is intimately involved in putting each of us together. One of the scriptures that we have found ourselves returning to during this time is the Psalm that says, “You were knitted together in your mother’s womb.” I believe that God is actively forming Clara and that he wants her to be healthy and whole as much as we do.

2) I believe that we have no way of understanding why bad things happen. Clara has certainly not deserved this, and I’d like to think we didn’t either. Bad things happen to people. I do not believe that “it is for a reason” or that “it is part of God’s plan.” I think bad things just sometimes happen. I do believe that God is the one who is carrying us through this and that he has used this experience to teach us a lot and to draw us closer to him. I believe that the many people who are praying for us have also experienced some of God’s grace through this. But I don’t think that’s why it happened. I think sometimes we just get dealt a blow and it’s hard. God is there for us, but I don’t think He caused this or wanted it.

3) I believe that we are designed for community. I cannot imagine facing what we have faced in the past few months in isolation. One of the greatest gifts that God has given to us is a large and powerful community. Our church family, our work colleagues and our friends and extended families have supported us and cared for us in ways that I never knew were possible. The community is even bigger than that though. We have been reached out to by strangers who have been impacted by CDH in their own lives and want to offer their love, by friends of friends of friends who have heard our story and been moved to pray for us, by churches and monasteries across the country who have assured us through cards and letters of encouragement that they are praying for us. During the “difficult week,” as we sometimes now describe that Tuesday through Friday when our future was totally unknown, we had a friend tell us that someone we have never even met before was fasting for us as an expression of her love and prayer. That is powerful. I have learned better how to respond to others who are in crisis too. Sometimes people say the “wrong things,” but we have learned to hear their intentions behind it instead of being hurt by the words that are spoken. It’s okay if people don’t know what to say at all. We’ve gotten some cards that say something like, “I don’t have any words for you, but I just wanted you to know that I love you and you are in my prayers.” That’s enough. We, as God’s community, do not have to have the right words to say, or any words at all. But letting people know that you care for them is a tangible expression of God’s love for us and carries sustaining and renewing power. I have faced health crisis before (some of you remember the tumor that was removed from my parotid glad when I was 19), but I have never felt the presence of God’s family on earth as deeply and complexly as I have during the past few months. It is a beautiful thing and I am really grateful that God designed us to be in community with one another in such a powerful way. It is a gift that I hope we never take for granted.

4) I believe in prayer. I’ve always believed in prayer, but I have never prayed as fervently as I have the past few months. I have never been as broken, or cried out to God through tears just pleading for something with all that I have. That may not be pretty, but it is both humbling and empowering to completely and totally throw yourself at the mercy of your God. I’ve always heard Paul’s words, “pray without ceasing” and thought that meant to just keep praying. But I’ve learned in the last few months what it really means to pray without ceasing. I feel like I carry my prayers for Clara around in every breath I take all day long. I am never not thinking about her. I am never removed from her. I feel like God and I are just holding hands and walking through my “normal” life while I am constantly whispering in his ear my petition for my child. I’ve also learned about the many different forms that prayer can take. I wrote on my blog a few weeks ago about prayer imaging and how powerful it has been for me when I am at a loss for words to just share with my Creator an image I have for prayer. Many friends have also shared their prayer images for Clara and that collective thought has been a moving testament for me. I know that people have fasted for us. I know that people have added us to countless prayer lists and chains. I know that people have made Clara part of their daily devotion and prayer time. I know that people have lit candles for us and made donations in our honor and eaten the Lord’s Supper and hundreds of other expressions of love, care and concern. Those are all prayers. We have really, really felt those prayers. It is undeniable to me that they are being heard and that they are being answered. What an incredible gift from our Father that He allows us to communicate so directly and personally with him. I am grateful for prayer.

5) I believe in miracles. When we were told that the doctors did not think Clara would live we were devastated. People immediately surrounded us with an incredible cloud of prayers. When we found out a few days later that she had a fighting chance, we felt like our world had been turned right side up again. I believe that what we experienced was a miracle. We continue to feel that we are experiencing many miracles – big and small – through this journey. We still need big miracles. We are asking for a miracle when we ask God to cure our child. But more than ever before I believe in them. I don’t think miracles were just something that happened with mud and spit or fishing nets thousands of years ago. I believe that our God is still in the miracle business and that he uses people in this world to allow miracles to happen. I’m not just asking for a miracle; I believe that it can happen. To God be the glory.

6) God’s hope, and the offer to trust in Him instead of ourselves, is a huge blessing and relieves an unbearable burden. I have had moments in the last few months where I am panicked and when I am filled with fear and anxiety and sadness. I think that’s all perfectly normal and probably even healthy. But overall since November, Robert and I have experienced a great peace. We are so hopeful about Clara’s future and it is a hope that I believe is not centered in naïveté or denial, but in God’s calming peace. There is absolutely nothing I can do for my daughter. I cannot change her condition or take any medication or eat a certain food or get enough sleep to fix this for her. Not even the doctors, as skilled and talented as they are have the ability to truly cure her. All they can do is provide support, perform surgery, and create conditions that could lead to healing. There is only one Healer and He’s the one who made you and me and Clara. In recognizing that this is totally out of my power and control and totally in the power and control of the One who can do something about it, I find a great relief. Typically, I am a problem solver. I am a fixer. I am one who wants to make things right and will take the steps to make that happen. In my faith, I often struggle to hand things over to God and give up control myself. It’s been easier than usual with this because I see no other way. I can’t fix her, so why would I want to try? I want the One who can to have her completely. So daily, hourly, minutely, I hand her over to God and trust in Him to take care of her. The peace he gives in return is a great blessing.

There’s more. There are probably hundreds of little lessons here and there that I have taken away from this experience. But I hope that in sharing a few with you this morning that you have been encouraged or reminded of something relevant to your own lives as followers of Christ. This has been the first chapter of this story. In 35 days, on March 23, we will induce labor and Clara will be born, a child of God. Chapter Two will begin then as we all stand by her and encourage her to fight for her life. I’m sure a whole new set of lessons will be learned then. But I hope I will carry these with me.

We thank you for your prayers. We are not able to respond to every single phone call, email, letter, or card that we receive, but each one touches us deeply and encourages and sustains us more than you can imagine. We appreciate your continued prayers in the weeks and months ahead and ask you to join us in asking for and expecting miracles. We serve a mighty God. May all the Glory be His.

Clara's Room

Preparing a space for Clara has been an important part of my personal processing about all we’ve learned in the past few months.  As I shared when we put the crib together shortly after her diagnosis, these tangible acts have been a way for me to feel like I am slowly putting her together, and a reminder that we have prepared a place for her with the optimistic anticipation that we will bring her home to enjoy this space.  During a time when there’s not much I can do for her, putting her room together has felt like some small act of offering on my part.    

I’ve had ideas about what I wanted a nursery to look like since before Clara was ever even conceived.  My ideas have changed some, but this fabric I chose back in the summer when I knew I was pregnant, couldn’t tell anyone yet, and was too sick to do much besides surf the internet between trips to the toilet.  I knew I wanted it to be gender neutral, regardless of the gender, so it could be used again for a sibling someday.  And although I’m tickled pink about having a girl, I never wanted lots of pink or flowers or lace.  I’ve always been a color person, and the bright and bold colors that we’ve chosen to fill Clara’s room seem fitting for a girl whose name means, “bright, clear.”  It already brings me joy to go and sit in there; I hope it brings her the same joy as she grows up in it. 

A nursery is often more the reflection of the parents mother than it is the child, and I suppose our room is no exception.  My passion for children’s literature is a natural extension of my career, but a love I hope we will pass along to Clara, too.  The artwork in her room was carefully selected from some of Robert’s and my favorite children’s books.  Soon Clara will know these stories, too. We can't wait to read them (and many, many more) to her.

Here it is. 

Changing table/dresser and glider

The fully assembled crib, complete with bedding

Her bookshelf, with just a few of the many, many titles she'll have to choose from thanks to eight years of her mother teaching elementary school. 
The big bright windows that fill this room with glorious sunlight (and the blackout curtains that I hope keep her sleeping soundly in spite of it!)

A little handmade bunny we bought in Ireland, hoping we'd soon have a baby to give it to.

The rocking chair from the Jackson girls
The view as you walk in the room
The view from the closet corner
The view from the glider corner

The view from the crib/window corner
Now for your children’s literature quiz.  Can you name the books for all of these illustrations?

I love it here.  My heart is filled with peace and joy when I spend time in this room.  I couldn’t be happier with how it’s all turned out.  Mission accomplished. 

February 10, 2011

Big and Hairy

We had another ultrasound today and the verdict is: Clara is big and hairy.  She's 5 pounds, 6 ounces (78th percentile) and continuing to grow well.  At this rate, we're gonna have over an eight pound baby.  That's good for surgery, even if it's a little terrifying for mama, so bring it on, Clara!  The sonographer also couldn't stop talking about all her hair (On her head, people.  She's not coming out like a hairy ape!).  I could even see it and I'm no good at reading ultrasounds, so it's a good thing I got some hairbows at the last shower.  We're gonna be using them.  Kathy said that her hair looked straight, but I'm still holding out hope that it just looks straight because she's floating around in a bunch of amniotic fluid and that she may get my curls.

Aside from that, she's got big chubby cheeks, still loves sucking on her fingers and hands (and even the umbilical cord some today....eww, gross!), and was wiggly and happy.  The amniotic fluid readings were stable from last time (between 24-26cm) and still on the high end of normal, but normal.  Her heart is beating well, her lung is "breathing" the liquid she's surrounded with and her diaphragm looked good too.  The stomach is still above, the liver is still below.  And she's still head down, so I hope she's cooperative and stays that way!   Dr. Chen kept saying, "Everything is stable. Everything is stable."  We'll go back weekly for ultrasounds from here on out just to keep an eye on that amniotic fluid and continue tracking her growth.

Here are a few photos.  I had a hard time choosing tonight because Kathy took such good ones.  Keep praying for this baby girl.  We sure do love her. 

"But truly God has listened; he has attended to the voice of my prayer.  Blessed be God, because he has not rejected my prayer or removed his steadfast love from me!"  Psalm 66:19-20

February 7, 2011


I know I told you that the next post would be photos of the nursery, and I promise, they really are coming soon.  But I can write much much faster than I can upload photos, so I thought I'd catch you up on last week's round of appointments.  Plus, I really delight in stringing you along and building the suspense about the nursery.  (IT'S REALLY CUTE!!!).

Last week I had a regular OB appointment that was pretty uneventful.  Everything seems to be still on track and normal as far as the pregnancy goes.  They said they can't do much about my horrible acid reflux/heartburn/vomiting since I'm already taking 150mg Zantac, Prevacid and about 20 Tums a day along with the Zofran.  Since I had such yucky stomach issues before ever becoming pregnant, it's really no surprise that it's been the biggest physical struggle for me during this pregnancy.  Maybe the wives' tales will be true and Clara will come out with a head full of beautiful hair.  I've got the bows ready, just in case. 

On Thursday we visited Brenner Children's Hospital for the first time.  Since Clara will be transferred pretty quickly after our delivery at Forsyth (within a few hours probably), this is the hospital where we'll be spending most of our time.  We're so grateful to live near such a wonderful children's hospital with a national reputation for excellent care.  We are confident that the surgeons, neonatalogists, nurses and other staff there will give us the very best care possible.  We went to tour the NICU (Neonatal Intensive Care Unit) and PICU (Pediatric Intensive Care Unit) and get a picture in our minds of what our day to day lives will be like while Clara is there.  The facilities all seem really nice and the staff was warm and welcoming.  We were given our tour by a social worker who took time to explain to us what kind of bed Clara will most likely be in, show us some of the machines that she could be hooked up to, and generally explain some of the rules and procedures of the NICU so that we can know better what to expect.  They have a lactation consultant on staff and a room available for mothers to pump, so I'll be trying to give Clara as much of my breast milk as possible, even if it's through a feeding tube initially.  They've also got "family rooms" where Robert and I will both spend the night with Clara in the room with us for 1 or 2 nights before we're discharged and have a "practice run" at being alone together.  There are several "suites" and each suite has about 6 different beds/bassinets for infants.  So, it's not the most spacious or private set up, but I think that's pretty typical.  We're only allowed to have 2 visitors (including us) at a time due to space and probably also security.  We saw lots of teeny tiny babies and some who have probably recently undergone surgery.  There was not a baby with diaphragmatic hernia in the hospital at the time, nor did we get a chance to see an ECMO machine in use.  We're grateful that no one is having to use it right now!  They had recently discharged a baby girl with a diaphragmatic hernia who only stayed in the NICU for ten days after her surgery.  Everyone there was saying what a shock it was how well this baby had done, because typically even a best case scenario is at least a month.  Apparently she was breathing on her own before they even did surgery and then didn't have to be on a ventilator for very long afterwards at all.  They all cautioned us to not expect that or hope for that, but to us it is encouraging to hear such positive stories, even if we recognize that we may not experience the exact same thing.  I'm joyful for that family and continue to trust that God will provide and care for us as well.  It's nice to know that it can be done.

So, that was our NICU experience.  There's nowhere for us to stay overnight, so we'll go home in the evenings and try to sleep, trusting that she'll rest in good hands.  We're so thankful that we're only 15 minutes away.  I'll probably be spending most of my days over there and Robert will certainly stop by as often as he can once he returns to work (somebody's got to earn some money to pay these medical bills!).  They do have Wi-Fi, so I'm sure I'll be bringing my computer and updating you all regularly with photos and news as we get through this together, by God's grace.

On Thursday we go for our next ultrasound.  It's certainly starting to feel quite crowded in my belly, so I'm not sure what kinds of pictures we'll get (in terms of the fun 4-D ones of her little face), but if there are any cute ones, we'll share those too.

Thanks for your continued prayers. We continue to have faith that they are being heard and will be answered.

Ask, and you will receive, that your joy may be full. (John 16:24)
Whatever you ask in prayer, you will receive, if you have faith. (Matthew 21:22)
When he calls to me, I will answer him; I will be with him in trouble; I will rescue him and honor him. (Psalm 91:15)

February 5, 2011

A Shower for Clara!

I've been a bad, bad blogger.  Sorry for the hiatus.  Quite frankly, I'm tired.  I'm in that third trimester stage now where I just feel huge and it's harder to do my everyday stuff.  Teaching all day + keeping a house running + growing a human is just plain wearing me out.  Add to that the fact that I'm not sleeping particularly well thanks to my continued battle with the vomit-monster and I just haven't had the energy to update.  So, a million apologies to the faithful who have continued to check this site hoping for an update.  Thanks for your prayers and your love and your support.  Updates granted!

First of all, we had a lovely shower for Baby Clara last weekend.  My "Aunt Trina" who was like a second mother to me growing up and her two wonderful daughters, Kathryn and Sarah, who were the closest thing I ever had to sisters hosted an absolutely perfect event.  Need photographic evidence?

I mean, these people know how to throw a party and how to do it right.  I'm so grateful for the love and support of dear friends during such an exciting, but also tenuous time in our lives.  It was really fun to just celebrate this pregnancy and Clara and optimistically prepare for her like any other new life.  It made it very real to see and touch all the "stuff" that was given to us for her.  We can't wait to use it all. 

Here I am with the two grandmothers (who don't look at all like grandmothers, if I may say so):

And here we all are with the hostesses:

While browsing these photos I have discovered that I apparently make ridiculous faces while opening baby things.  I imagine it was something like, "Oh my goodness, this is the cutest, sweetest, tiniest, softest, most adorable thing ever!" but instead it looks more like I was trying to contain some sort of cough/sneeze/laugh/cry and I look silly.  So, here's just a small sampling of the "opening presents" part:

We got lots of super-cute outfits for her to wear:

And books for her to read:

And many other things to feed her with, burp her with, diaper her with, blanket her with, bathe her with, play with her with, and more!:

I can't show every single gift in this blog post, but seriously, it was an incredible display of generosity and love from a community that is eager to welcome Clara and love her well.  The shower was a drop in, so I didn't get a great group shot of everyone there, but here are a few of my favorite ladies who made it out for the special day:

Not everyone gets to be pregnant alongside their best friend, but these two baby girls are due just ten days apart.  It's been so fun to share this pregnancy with Wendi and I look forward to raising our children together too.  Someday maybe they'll  look back at this belly shot and giggle. 

 I also got to have my two baby nieces there for the shower

And some honorary nieces too!:

 Sweet Clara is going to have so many wonderful friends to grow up with!!

Here is my special gift from the hostesses - a white rocking chair, just for Clara.  It looks great in her room and I know that she'll love it when she gets a little bigger.  The thoughtful hosts put two Cabbage Patch Kid dolls in it, because they were my absolute favorite when I was a little girl.  I didn't even know they still made them!  What a sweet and meaningful gift that we will always remember:

So, a big thanks to the Jackson ladies and everyone else who came to help us celebrate this great gift from God!  We are so excited to use all the great things you've given us to help us care for our precious girl.  You've truly brightened our lives.

The nursery is all ready now, so the next post will be the great reveal - stay tuned, patient readers!

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