Tapestry of Life

Yesterday when I was driving to work I was praying and I just felt so small. God is so so great and vast and all the traffic around me was full of others praying for miracles...I read my devotion and it actually addressed just that. It said that although He is unimaginably vast, He chooses to dwell within us, permeating us with His presence. We should be awed by the power and glory of His spirit within us.

Today I feel weary. It really started yesterday afternoon when I was driving home from work and I felt completely exhausted as if I could close my eyes and fall asleep. Mickey thinks I am depressed and he may very well be right.

I felt lots of movement yesterday and have even felt movement today. I think maybe my weariness is due to the fact that I am beginning to feel so pregnant. I am small and therefore it is the time where I start limping due to the extra pressure in my hips, and my pants no longer fit. I need to go get maternity clothing. I actually gave all of my maternity clothing away two years ago after Emily. At the time we expected to wait three years or more before discussing another child. However, due to some circumstances with our work and our ages, last Valentine's Day I received a message from Mickey telling me that he was ready for our fourth child. How appropriate that Auguste was conceived and few months later and his due date is actually February 14!!!
But, back to maternity clothing, I need some. I need to buy new clothing and it terrifies me! I usually would be so excited to find a reason to go shopping, but my heart isn't in it.
I think this scares me because I wonder if my hesitation means my faith is not strong enough. Those dark places sneak up on me and I feel that maybe God will not grant me this miracle because He doesn't think I have enough faith. Maybe if I could pray more or get more people praying or find more time to weep on my knees, maybe then things will turn out better.

The worries of two weeks ago seem so insignificant. Politics. Bills. Student loans. Houses. Where we will live. I think I just realized that so many things that mattered then are so ridiculous. That it really doesn't matter who gets voted in because the truth is, I can't imagine the world changing dramatically in 4 years and all I want to do is be planning Auguste's 4th birthday party. I don't care if we don't have the perfect house in the perfect location, I just want my four healthy children.
My sweet sister told me that she told God to scrap all she was praying for a few weeks ago, and just give her the opportunity to run her fingers through Auguste's hair and hear him laughing with all of his cousins.

Basically today I was just full of feelings of being small and helpless. I would go to the bathroom and sob for a bit, pull it together, see a few patients, and so forth. I cried the whole way home.

I saw a post on a hydrops group from facebook. It was a father who was wondering about the shunts, as his daughter was just diagnosed with hydrops at 18 weeks. He clearly had seen the survivors that had shunts, and had been researching just as we have been doing and he sounded as desperate as I feel. I responded with what we have done and hope to hear from him if he learns something I don't know, and I pray his baby AND my baby will survive.
But it left me feeling insignificant. I realized that heaven is flooded with desperate pleas right now. And that the more children diagnosed, the odds of us being in the 10% go down...maybe. I don't know. Its all ridiculous and I just feel utterly helpless.

I feel like there is nothing I can really do to change the outcome.

It has been a down day, but I feel so blessed that we have such a wonderful network of people who love us! I know that so many people are praying and believing with us for his miracle.

Today I had two friends, Jenny and Jean send me messages about breathing and being present in this moment and to look around and see all the good and be at peace.

One of our doctors, Dr. Kathy Christman, who is perhaps the most sincere person on the planet, gave me a book called Guerrillas of Grace, Prayers for the Battle, by Ted Loder. It's a beautiful book of poetic prayers.
I also came home to a sweet package from a friend, Laci, with lots of feel good things like a journal and bath salts and chocolate.The journal says on the cover "She woke up and realized she had forgotten the definition of the word 'impossible'. She decided it must not have been important". There was also a sweet soft, blue bunny for Auguste. His first gift. Thank you Laci.
My dear friend April sent me photos of the fabric she started piecing together for his quilt. It was everything we talked about a few weeks ago before all this started. I can't tell you how much it means to me that she has enough faith to start making the quilt despite what we have learned. She says she has no worries and she can't wait to meet him because she loves him already.

So, on the way home, I listened to a beautiful song "On My Knees" by Jaci Velasquez and I cried and cried and cried. I cried because I am small and helpless. I cried because I love Auguste so much. I cried because I am ashamed of the many times I forgot what is truly important. I cried because I know God is with me.

Then I dried my tears, and I went to the store and bought a funny birthday card for my best friend, and I bought a fistful of rainbow colored nail polish.


When I delivered Oliver, I painted my toes the color of a rainbow because that felt good to me. Two years ago, on Oct. 8, a dear friend didn't get to paint rainbow toes with her daughter as planned, due to a tragic car accident. www.rachelsuzking.blogspot.com
After my visit to the store, I came home and did pedicures for me and my sweet Eliot and Emily with lots of colors of red and purple and blue and yellow and green and orange. We did it to honor sweet Makiah. We did it do feel good together. And right now I do feel a bit better.

And I truly think God is bigger than all of these worries. He knows my heart. He knows I want Auguste alive and healthy. He knows the outcome and how my prayers will be answered. And He is not unlimited in His miracles, and He can save these babies. My Auguste and the other babies too.

I truthfully don't know if He will and I don't understand why. Because there is this big tapestry of life and God sees the beauty of it and I can only see bits and pieces and the knots and twists. It reminds me of when I was living in Brussels. Every few years in the Grand Place they do a beautiful floral carpet. It is all flowers and up close it is amazing and you see lots of flowers, but you really have to get up very high to see the entire picture. I think that is a lot like life, right? We just are too close to see the big picture.
I hope the big picture includes us planning birthday parties and soccer games and play dates with Auguste. I have faith it will...as I still feel his sweet kicks.


Please don't forget to pray with us tonight.

Mustard Seeds

This morning we got to see sweet Auguste. He was sitting breech with his face nuzzles against me, hands by his face, heart beating with a perfect heart rate of 146. He is still growing and developing on schedule. Yes, there is still fluid on his chest and abdomen. It was really hard to tell if it was more or less, and we did not have the high risk doctor to tell us, but we have learned that it not quantitative, and it is really the presence that is troubling.

We were able to meet with one of my favorite doctors who is good at being positive with us and were able to have a lot of questions answered. So far all of the testing has come back normal. There are still some rare things pending, but the TORCH (Toxoplasmosis, Other viruses, Rubella, CMV, Herpes) have come back negative as well as most chromosomal disorders, and cystic fibrosis.

We have our cardiology ultrasound on Monday and on Wednesday we are going to the Levine Children's Hospital in Charlotte to be re-evaluated and try to get some further answers regarding lung development and possible interventions. http://www.levinechildrenshospital.org/body.cfm?id=866  We are excited about that as it is only a 2 hour drive and we can go while kids are in school. However, we are already looking at Children's Hospital of Philadelphia as they are supposedly very cutting edge regarding hydrops. We are interested in the thoracic shunting in utero, and are unclear as to risks and benefits. It is certainly not standard of care but we want to at least be able to have an open discussion about it since we have seen some success stories with this intervention. Of course, the ECHO on Monday will determine if we need to go this route, as there still could be something we have yet to see going wrong with his heart, and if that is the case we will need to move a different direction.

I have learned so much in the last week, and I am still learning a lot. I have found a lot of support. http://carlihope.blogspot.com/p/hydrops-information.html has been a very useful blog, and the owner of the blog has been very supportive and given me lots of direction. Thanks Katie! She also directed me to www.tinyheartbeats.org, which will be sending me a fetal heart doppler, hopefully next week. Until then, one of my fellow nurse practitioners is going to try to dig out an old doppler she used in the past for other purposes, and if it still works, I can maybe be able to have the peace of mind I need without leaving work.

The past few days I have felt very hopeful and confident. I am not sure if perhaps this has all just made my faith stronger, but certainly I feel more of a peace.

The kids like to talk to Auguste and even Emily kisses my belly and says "Luf You Auggie". I know he hears us and I want to will him to stay strong and come join us soon.

I have had so much prayer and support. Today I received a random email from a grandmother who had a granddaughter who survived hydrops 4 years ago and is healthy today. I am not sure if she received my email address perhaps from a forum where I may have asked a question, but hearing from her was comforting. Unfortunately, internet searches offer many more horror stories than survival ones. I hope that when all of this is passed, I will be able to use these blog posts to offer comfort and reassurance to some other mother who is awake all night searching for hope.

I was reading my Bible the other night and a small card fell out of it. It was about the size of a business card, and had a precious moments photo on it, on the back it said "Let's conquer the impossible together". It was from my best friend, probably Given to me in college for some purpose. Who would have known 15 years later it would be so relevant.

Tonight I found an old charm I used to wear often, but had long since lost (I have a little girl who likes to borrow my 'fings'). Anyway, I found it tonight in the bathroom, but it looks like it has been on a journey through the sandbox and is no longer wearable. But, it is a small mustard seed, with the verse on the back that says "If ye have faith as a grain of mustard seed, nothing shall be impossible unto you" Matthew 17:20.

So I lay in the bathtub tonight and admired my beautiful swollen belly, and I rubbed my charm and stared at that small mustard seed. I believe. I have much more faith than that mustard seed.

I have found myself staring at newborns with more awe than usual (because lets face it, I have always loved children), but I was specifically taken back by a photo of a baby nursing yesterday. I haven't stopped thinking of it, and thinking of all of our sweet images of Auguste with him nuzzled to me in the exact same way. I believe! I am holding out all hopes that my Auguste will be nursing healthily in a few short months.

Loving from the inside

I am sorry if my last blog came across as angry. I am angry I guess, but it isn't directed at anyone and is more a product of my own frustrations.
Today however, I have been blessed with lots of fetal movement. I have a couple of resources on potential second opinions to explore, and I was directed to www.tinyheartbeats.com which rents fetal heart tone monitors to people in my situation, which if that works out, will limit my drives back and forth to my OB.
I feel pretty confident today. I just feel positive and kind of have a peace telling me that its going to be ok. And when the dark places sneak up behind me, I think of next years Christmas card, and I think of little Auguste and soccer and first day of school and all the mommy moments we will share together. Then I feel a kick, like he is willing that as well.
The kids talk to him and tell them they love him, even Emily likes to lay her head on my growing bump, and this morning I took some time to sing to him, and now I am wondering if that might be why he is kicking me. haha.

Hope

Today was a weird day full of mixed emotions, from one extreme to another
Yesterday was also hard and full of dark places full of statistics and thoughts of burial. I even threw up my dinner, which I am attributing to stress.
Then last night Mickey sat in front of me and listened to my belly with a stethoscope. I imagine he only heard my bowels, but he did irritate Auguste enough to get him moving around, and so we both slept peacefully.
Today also started off bad. I got a well intended email that said "we all want healthy pregnancies, but more than that, we want healthy children". I am not an idiot, and can read through the lines of that. I then had a friend ask if there were actually babies that survived this? Truth, YES! There are babies that survive this. Hydrops fetalis is found in 1/3000 pregnancies, and the survivors are harder to find yet, but the statistics remain at 10-25%. And YES! Many of those babies live healthy lives and are happy healthy children. I guess I just started feeling mad. Angry that this happened in the first place. And angry that I felt immediately as if Mickey and I were going to feel the need to defend our decisions to fight and advocate for Auguste's life.
We have many unanswered questions still, and we do not know what the future holds. We do not know if we will be blessed with a miracle and this fluid will be gone soon. Or if we will have to try to seek someone to consider a thoracic shunt, which is not standard of care but I have seen some success stories that did this (considered a minimally invasive procedure but sounds scary to me). Will we have to make decisions that could possibly put him at risk but potentially save him. Will we need have to consider his quality of life and will there be decisions we have to make after he is born, will we have to think about burial. There are many hard things we may indeed have to face in the future and Mickey and I will do the best we have with the information we are given. Mickey said tonight that this is why he doesn't like to share things with everyone, because he feels like people will give their advice and it isn't always what you want to hear.
So, depressed and feeling down and angry, I spent the first half of my lunch break calling my Pappy's voicemail over and over again and listening to his voice...because he would have known what to say and he would have known what to pray, and I always felt more confident God heard his prayers that mine.
I spent the second half of my lunch break talking to my last living grandparent, my Ma Ma, and she doesn't get on the internet and she is confident things are going to get better, and she trusts God to answer her prayers and she truly has hope that he will answer them in the way we want to be answered.
I felt better after that.

When I first found out I was having a boy, I told one of my best friends Melissa and the first thing she said was "Oh my God, you are going to have the cutest Christmas cards!!!" I laughed and said "That is why we are friends, because I thought the exact same thing!!!" Today she told me "Lisa, you just need to keep positive, and keep envisioning that 2013 Christmas card with Auguste in the photo". So that is what I have done the rest of the day.

I did go have fetal heart tones done today and they were strong at 146. He has also been moving more this evening. I asked the nurse how she was so good at telling the difference between movement sounds and heart tones. She said probably just years of experience, but not to worry, give it a few weeks and I will be feeling a lot more movement. This brought tears to my eyes and I said "I hope so". She was so confident and she just said "oh honey, you will". I just cried. I don't know how much she knew, but she held my chart and she made me feel so much better and I felt like my tears at that moment were tears of happiness.

I came home, made dinner, finished the laundry that I didn't do this weekend, decorated our house into a "spooky house", and listened to three super heroes laughing and running around the house in capes. It was a good night.

So, Mickey and I will continue to advocate and do whatever necessary in the next few weeks to ensure we are exploring every possible avenue for Auguste. And I will continue to picture our 2013 Christmas card with his sweet face as part of it. Until then, we will enjoy this photo that Bluebird (Eliot) drew for us tonight.

I told my mom I felt glad that I was the only one of us that got a body, but she promptly pointed out that I also was the only one who got big thighs. I just LOVE that she drew in Auguste when drawing our family. Because he is indeed a part of it.

Auguste- pronunciation

A lot of people have asked us how to pronounce Auguste. It is pronounced like the month (August), or "a gust of wind". We have always loved this name, and the artist in Mickey wants it spelled like the artists Auguste Rodin and Pierre-Auguste Renoir.

Thanks for all the well wishes and continues prayers and encouragement. I woke this morning and got on my knees and prayed for a healthy 24 hours and continued healing. One day at a time, right?

We discussed today that we need to begin researching the leading experts in this. It seems over the past 15 years prognosis has not changed dramatically. We have a great team of doctors in Greenville, but we know that a time may come when we need to have a plan for second opinions regarding this. Pray for our guidance in these decisions as well.

Auguste

On Sept. 25, Mickey and I went in for our routine 20 week ultrasound. Because I am 36 years old, and therefore considered "advanced maternal age" this ultrasound took place on the high risk floor because they have more advanced settings on the ultrasounds.
Our sweet baby boy, Auguste, was found to have non immune hydrops. This essentially means that he has a fluid accumulation in two cavities of his body, in his case, both chest and abdomen. This can happen for a variety of reasons from chromosomal disorders, to infections, to anemia, and so forth. Unfortunately in most cases, this is a fatal finding. In rare cases, however,  this absorbs on its own and the baby goes on to develop naturally. In some cases, if a cause for the hydrops is identified, doctors can try to intervene and help this with a variety of methods.
We began further testing immediately, with more lab work and amniocentesis.
So far, we know that the main chromosomal disorders, including Down Syndrome, trisomy 18 and trisomy 13 have been ruled out. This is fortunate because the prognosis for those disorders with hydrops is very poor. We have also been able to rule out parvo virus and cytomegaly virus, which is somewhat discouraging because there is a better prognosis when in infection is the root cause.
There are many further tests that are still pending. We will do another ultrasound on Oct. 8 with a cardiologist to further examine his heart. We spent a lot of time studying his heart and other organs, blood flow, and development and so far everything else looks completely normal. We also have a DVD from his 16 week ultrasound when we found out the sex, at which point everything appears normal, which seems to indicate something more acute has happened.
Our doctor has told us that now is a time to truly seek a miracle. And we believe he is a miracle. He is alive and well at the moment.
We are praying hard for him, because he needs to get well. In order for his lungs to keep developing and for him to be viable at birth, this fluid has to reabsorb. Otherwise, he will could die in utero, or shortly after birth.
The internet is statistically quite bleak, and I have cried myself to sleep at night desperately praying for a miracle. Mickey feels confident that he is well now and he will continue to improve through the next weeks.
It has been a very hard few days, because when you work in oncology, as I do, it is easy to get jaded regarding the implausible  It happens, but everyone is praying for a miracle and it is hard to feel like you are likely to be one of the rare few that get one.
My father told reminded me recently that we do not trust a God of internet statistics, but we trust a God of miracles, and that those miracles are unlimited. UNLIMITED!!!
We have only just decided to share this story with everyone, because it is important to us that people remember that our sweet Auguste is alive and that their words of encouragement and prayers for us are directed at his ultimate healing. We do not want people to give up hope and we want people to continue to have faith that our baby boy with survive this.
Mickey and I have not been trying to keep this secret, but we both deal with these things differently. We decided to start this blog to give people the information they needed. We know there is a lot of love for us out there and we feel so blessed by it. We know that people care for us and want to know what is happening in our lives. I know there are a lot of questions and we will try to update this blog as we find out more answers.
I certainly can use words of encouragement as often as possible, because I feel like the past few days and the coming days will continue to be full of sleepless nights and worry. I am trying to stay positive and healthy because that is important for my growing boy. So if you have a song or a verse that you think will help me with hope and faith in the miraculous, please send it my way.
Mickey would like to deal with this more privately. Those of you who know him well know that he lost his brother when he was a senior in high school. It is hard for him when he feels that people, no matter how good intended they may be, are pitying him, especially since Auguste is alive and we need to know that people not writing him off. That is how it feels to him, and therefore, please understand if he does not desire emails and phone calls regarding this.
We both truly desire your prayer and hope and faith with us that our sweet son will be in our arms in February, healthy and happy. Please have faith with us that our little miracle will be completely healed.

Much love,

Lisa

When Boy Grows Up

"I just want to be five things when I grow up Mom:
1. A Superhero
2. A Builder
3. A Zoo-man
4. A Fireman
5. A policeman


Sounds like he plans to be a good guy!




Right now he is leaping on the couch and says he is learning to fly, but he wants me to help make some wings for him. 


"I really want to fly, Mom"


Everybody does.