The last 24 hours have been much better than the previous 24. It really is true what everyone said about the roller coaster that this CDH journey is. We’ve had such highs and lows already and yesterday I don’t think we were really prepared for how intense that would feel. Every piece of bad news, no matter how small, felt totally devastating. And with every piece of good news we soared probably a little too high. What we are trying to do now is re-focus enough to accept both the good and the bad with a bit more perspective. We’re trying to recognize that we are going to have good hours and bad hours, good days and bad days, and that we cannot let the latest piece of medical news completely dictate our levels of hope or despair. This is now a marathon. We must pace ourselves.
Before I begin describing the past day and updating where we are medically, let me say to the thousands of you out there reading how appreciative we are of your love and your words of concern and affirmation. We get emails and Facebook/blog notifications on our phones and are checking them by the minute because we draw so much strength from your words. I have been especially touched by the many CDH families out there who have somehow found out and reached out to us during these first few days. I knew that this was a special community, but I cannot say enough how much it has meant to me to hear words of sustenance from those of you who have truly walked down this path before. Parents of both survivors and angels, it has been a powerful experience for me to read your heartfelt words. And to all the rest of you too – I cannot tell you how blessed I feel to be a part of your lives and have you share in this experience with us. There have been people I haven’t spoken to in many years who have surfaced to share love and concern and dear close friends who have stepped up to the plate with constant reminders of love and of course prayers. There are countless strangers who have heard about us from a friend of a friend of a friend and have been bold enough to tell us that our lives are important to them and our experiences have touched their hearts enough to compel them to pray. Your posts to Facebook and Twitter and email forwards and prayer lists chains have raised the prayers for Clara exponentially and we are so deeply grateful. Keep spreading the word because each and every prayer matters. Do not mistake our reticence for ungratefulness. I read and savor your words, so please keep them coming. I simply don’t have time to respond to each message individually.
So, last night the doctors called about 11:30 to say that they felt we needed to put Clara on ECMO (Extracorporeal Membrane Oxygenation). ECMO is a heart and lung bypass machine that allows the heart and lungs the opportunity to rest and get better. It is for patients whose hearts or lungs are failing despite all other treatments (other ventilation, nitric oxide, etc.). It is a last resort treatment and because of that almost all the babies who do not survive CDH have spent time on ECMO. That meant that we associated ECMO with not living and were scared of it and of course wanted to avoid it. Today, we’ve learned to change the way we think about this machine. It is scary, but it is also beautiful. It is keeping Clara alive right now. It is giving her hope for a future. It is allowing her to rest and giving her the opportunity to heal and recover and store up for the fights she still has ahead of her. This machine could save her life. We are thankful for ECMO.
Her transition to ECMO went well. At Brenner’s, the ECMO machines are in the PICU (Pediatric Intensive Care Unit) instead of the NICU, so she has been moved down the hall to a different department and is now under the care of a new staff. The neonatologists do not care for the babies in the PICU, so she is now directly under the care of the pediatric surgeon team (Dr. Turner, Dr. Petty, and Dr. Pranikoff) and of course the many fellows, residents, interns and others who are a part of a teaching hospital. ECMO must be attended 24 hours a day by a respiratory therapist and there is also a nurse assigned to Clara who gives her one-on-one attention most of the day and night. Like everyone we’ve met at Brenner’s, we were extremely impressed with all of this staff today. Clara is receiving excellent care and so are her parents.
Clara seemed so much more peaceful today. She’s on a traditional ventilator now instead of the jet ventilator that she was on yesterday, so her chest is rising and falling much more slowly and subtly. She is no longer fighting like she was yesterday and just looked much better overall. This is a much higher level of support, of course, but she has responded very well to it and all of her numbers looked good today. One of our primary goals is just to give her time to rest and recover and build up strength so we want to stack more and more good hours on good hours and then good days on good days. Today was very stable and so we consider it a succcess. Some of our other goals are to reduce her sedative over time so she can move, open her eyes and respond a bit more, and continue to reduce her pulmonary hypertension that I wrote about yesterday. We want her pulmonary pressure as low as possible – normal is about ¼ of systemic pressure, but we will probably not see it get quite that low, so we want it as low as possible. We would also like to see her wean off of the dopamine that she is currently on for her systemic blood pressure. Please be in prayer for these specific things when you think of Clara and intercede on her behalf.
There are several significant risks to being on ECMO too, and there are lots of potential complications. Today, Dr. Petty described ECMO as “a race against the complications.” While it is amazing technology, there are many things that go wrong for babies who are on it. Some of the most common of these include: brain bleeding, liver dysfunction, renal failure (usually temporary), other organ failure, clotting issues, swelling, lack of perfusion to extremities, and secondary sickness. There is not a lot that can be done medically to anticipate or prevent any of these complications, so we will remain prayerful that she will be protected from them. Please join us in asking God to keep her safe from these perils.
One of the questions we keep asking over and over and over again (and getting different answers for each and every time) is when will surgery be? Today, we learned that not only do we not know the answer to this question, we probably will not know the answer to this question for awhile. Different surgeons have different ideas about when the best time to do surgery is. There is no clear black and white answer about what has to happen in order for us to be ready for surgery. It is a judgment call made increasingly complex by many different factors. We probably will know a day or two before surgery (as in, it is not likely to be an emergency) is scheduled and as of right now we do not know if that will be next week or three weeks from now. We will be patient and again trust in the knowledge and skill of these wonderful physicians.
Whew. That was a lot of stuff, huh? Many of you are also asking how Robert and I are doing. We are much better today than yesterday. Like I said, we are trying to slow our pace and recognize that we are going to be in this for the long haul so we need to remember to take care of ourselves as well. I am recovering well from the C-section, although am expectantly sore and get tired. I will be discharged from the hospital tomorrow and will have more freedom to spend more time with Clara. I am pumping successfully and freezing milk for when Clara is able to use it. Pumping every two to three hours keeps me busy, but gives me a focus and makes me feel like I am doing something tangible for my baby. The rooms in the PICU are private and large so we have much more space to be with Clara than we did in the NICU. We were able to stand by her bed today for a long time and talk to her and touch her. The respiratory therapist said that she responded very favorably to my voice and my touch (as well as Aunt Jennifer’s!) and that her blood gasses were the best they had been all day while we were with her. This is a great encouragement and motivation that time spent by her bedside is valuable and helpful for her as well as for us.
That’s all for today. Please continue to read (I promise I won’t always make them so long!) and pass along and share and mostly pray. Last night when we were waiting for a decision about ECMO and many of you still awake and on Facebook were assuring us of your prayers, we were given a real peace despite a difficult time. As Robert said, thank you is not enough, but it is all we have. Thank you.
Just wanted to welcome you to the CDH Roller Coaster that we call life! Please know that miracles DO happen and that ALL of you are in our thoughts and prayers as you all embark upon this journey. Also know that the CDH community is an AMAZING one and we are all here to support you along the way!ReplyDelete
Love and prayers!
(Mom to RCDH/preemie/hemophiliac-Jaime!)
Thanks for the update Chrissy! I love the new pictures. What a beautiful girl :) Thanks for giving us ways we can pray more specifically for Clara. I will be on my knees tonight praying for your sweet girl. We love ya'll!!!ReplyDelete
Constantly thinking of you and hoping for a happy resolution for a deserving family. I dont have a baby with CDH, but ours was born with a heart condition and required a pacemaker at 6 days old. It's hard when you cant take your baby home with you like all the other mothers, but God willing, one day you will and have lots of fun with little Miss Clara!ReplyDelete
WFU '03 Meredith
Robert and Chrissy, you are both in our thoughts and prayers. We are praying for Clara's strength and health. I learned about Clara from Heidi's facebook post, and have been following your journey. You are in such good hands - Nurse Nakishia Coleman is a good friend - and I'm very familiar with Dr. Petty too. Little Clara is in wonderful hands. We will continue our prayers. Clara is beautiful!ReplyDelete
Bill and Robyn Holland
Larry and I continue to pray for Clara. I appreciate the details you give about her situation. She is beautiful!!ReplyDelete
Sheryl and Larry Burnett
Praying for your beautiful baby Clara. Seems like only yesterday that little Noah was in Shands, U of FL Gainesville - on ECMO - and fighting for life. Now he's a very bright, happy four year old who likes to show off his ECMO scar. (www.lifeaftercdh.blogspot.com) Clara is blessed to have a Mommy & Daddy who love the Lord and pray for her!ReplyDelete
Noah's Grammy Rhonda
Continued thoughts and prayers y'alls way. Your marathon reference is exactly right and you are amazing. Hang in there and take care of yourselves. Go lovely Clara go!ReplyDelete
Megan, mama to CDH warrior Olivia
Hearing that Clara responded to your voice warms my heart. I know that she hears the sweet, loving words of her mommy and daddy. Keep whispering in her ear, your words give her the will to continue fighting through all the obstacles and reminds her what is waiting for her very soon. I am praying for restful sleep tonight so that you both can reenergize for the days ahead. I am praying that God will continue to work his miracle in Clara, after all he isn't called the Great Physician for nothing. Sweet dreams to you three.ReplyDelete
Words fail me... My heart is so full of love for you all. I love you all and my prayers have come from the very depths of my soul.ReplyDelete
She is so beautiful. We are praying hard. Love to you and your sweet baby girl. Love, Chad, Casey, Lucy and WadeReplyDelete
I have a prayer chain going on multiple continents!!!!
Petty and Block were my heros in medical school, they are fantastic doctors. You are in such good hands.
We are praying for you and have shared Clara's story with many people in hopes that Clara will trhive with prayer that has strength in numbers. We are all praying for Clara and the both of you every minute we can.ReplyDelete
I am a friend of Sarah and Michael Lindsey. Your story has touched me to the core. Clara is a lucky baby to have such wonderful parents. I have been praying for all of you constantly, even under the dryer at the beauty salon today! I have enlisted my facebook friends to pray as well. Please know that you are all loved by "strangers" and I hope Clara improves quickly so she can have a successful surgery and come home before too long.ReplyDelete
I forgot to say... I think the picture of Chrissy in the PICU with Clara on this blog is the most beautiful picture I have ever seen.ReplyDelete
Chrissy & Robert--ReplyDelete
As I am sitting here trying to think of what to write I noticed the total pageviews ticker going up, and up, and up! Right now it's at 33,709, and that is nowhere near the amount of prayers that are being sent your way! That, and your good news of today, makes my heart happy. :) Wishing you a good night's sleep. You're never far from my thoughts.
Prayers and good thoughts and more prayers coming your way! Clara is so beautiful!!!ReplyDelete
Chrissy and Robert-ReplyDelete
Clara is a beautiful baby. I am praying round the clock for all of you and that God will give you whatever you need to face whatever lies ahead.
~God loves a lullaby in a mother's tears in the dead of night...better than a hallelujah, sometimes...~ReplyDelete
He hears you and Robert, Chrissy. Rest in His arms and continue to draw your strength from Him. He is cradling beautiful little Clara and whispering sweet "I love yous" in those baby ears. Love and prayers.
Clara is gorgeous! She has come into this world with so much love, so many prayers and so many hearts open to her to carry her through this. I am amazed by your strength and Clara is sure to have inherited it. You are all in my thoughts and in my heart.ReplyDelete
Cathy L. (Susie's friend from NY)
I will be holding that image of marathon before God when I pray -- that you are provided the sustenance you need for whatever part of the journey you are on, that you are granted peace to take much needed rest breaks, and that the water flowing from God's own well will renew you moment by moment. I've loved reading others' posts and had to laugh when I read about the person praying under the hair dryer. My own mother told me that she prayed for Clara while under the hair dryer at the beauty shop yesterday, so what are the odds of that! I have prayed with tears and with smiles for our dear Clara. Thanks for sharing your heart with us...she is just so beautiful!ReplyDelete
Praying for your precious family.ReplyDelete
Our hearts are staying strong for Clara's. We love you, Robert and Chrissy. We celebrate Clara's birth and can't wait to love on her! We're here--call us if you need us to do anything.ReplyDelete
Brittany & Kevin
I have been following your story for months now. I've been afraid to post because I don't want to scare you, but now I feel it is time. My daughter, Sylvia, was born with CDH (ultrasounds showed it to be "mild" case if there is such a thing, but ended up being bilateral--absoulte worst case scenario). Sylvia's blood gases were out of control from the get-go so she never received ECMO. How I wish she would have had a chance at ECMO. I'm glad Clara is doing well on ECMO! Thank God for ECMO! I've been praying for her constantly and shared your blog on my Facebook page. I must tell you that your way with words is amazing! You are in the right profession and all who read can feel your love for Clara through your words. Stay strong and fight the good fight. And thanks for thanking the angel parents for posting. It was that comment and the fear of ECMO that made me feel okay about posting. I think the angel parents blog stalk and wait until another angel parent posts or any type of sign that it is okay to let people know we're out there. I feel very strongly that Clara will come home to her beautiful nursery that you shared with us weeks ago. What a special thing this blog will be to share with her when she's older!! :)ReplyDelete
With fond regards,
Robert and Chrissy,ReplyDelete
Clara is so beautiful - I think she looks like Robert! Glad for a better day today. Praying you will continue to feel the presence of the Lord and all those who are praying for each one of you. Thanks for taking the time to keep us all updated.
Clara looks WONDERFUL while on ECMO!! My son was on ECMO for 25 days - which is generally a VERY long time to be on ECMO - don't be surprised if she swells a lot, it is a very common side effect of ECMO. Again I am saying prayers for your sweet little Clara and am asking my angel MJ to look over Clara from the Heavens.ReplyDelete
Mom to CDH Angel MJ
7/25/09 - 8/29/09
Friends of friends here, just wanted you to know that we are praying for sweet, precious Clara and for the both of you. She is just beautiful! We will pray that God sends you both strength and peace and that he protects and heals sweet Clara.ReplyDelete
Continued prayers coming your way! Clara is beautiful! Thanks for sharing the photos, especially love the one of mommy & baby - can see the love in your eyes! We will send special prayers for all of you!ReplyDelete
Tamra (& William) Hicks
May God wrap his arms around sweet little Clara tonight, and his healing touch will comfort her as she gets stronger and her little body is healed. May God be with Robert and Chrissy as they watch over their little girl. She is so BEAUTIFUL and I know she feels so much love right now. I will be saying special prayers for Clara and all of her family. My love to all of you!!!ReplyDelete
Glad to see Clara is pink and looks like she is resting comfortably now! I worked with ECMO babies in Seattle and Brenner's; it is an amazing therapy. We are praying for Clara to stabilize so she can have surgery next week. Make sure you two get some rest.ReplyDelete
Love and hugs, Joanne and the rest of the Buckner's
ecmo. a terrifying and beautiful machine. exactly how i saw it for our hollis and see it for other moms and dads for their babies today. your words are elloquent. honest. perfect. thank you for sharing your hearts with us as you journey forward. process every feeling. allow yourself to feel it all. and cherish every. single. sacred. second. there are days all you hope for is progress and forward movement but you have to remember against all odds, she is still here. that, in itself, is a miracle. enjoy those miraculous days. and hours. and moments.ReplyDelete
in His grace alone,
kelly, mommy to cdh and chd (congenital heart defect) warrior hollis :o)
Good Morning! Sweet and strong! Words cannot express to you how amazed I am with your ability to speak so clearly and explain all these details so intelligently. WE ALL appreciate you both sharing Clara's first days of this powerful journey of life with us. Thank you Robert and Chrissy for sharing your hearts so honestly, your joys and fears. I am praying constantly and specifically for each one of you and sharing your story with family and friends for prayers!ReplyDelete
You are wrapped in the arms of Our Loving and Powerful Father~Mother~God. May that perfect Peace spill over and through your family as you approach this new day with Clara Mae.
I love you.
The following is a devotion I receive on my e-mail through the Lenten season.ReplyDelete
"Is everyone born of the Spirit really like the wind, blowing here and there? After all, we’re taught a lot about roots. Roots in family, church, friendships, and God’s love. We’re taught that we shouldn’t be like a ship lost at sea.
What if Jesus meant something different? What if he meant that we’re like a child flying a kite? We only know to run where the kite tells us. As the kite rises and our hands grasp tight the string, the direction it travels is the right one to keep the kite up. So it is with those guided by the Spirit. The life journey might seem unrooted, but its traveling direction is born from above.
Anne Lamott writes about her congregation in California in Traveling Mercies, “Traveling mercies...this is what they always say when one of us goes off for a while. Traveling mercies: love the journey, God is with you, come home safe and sound.”
God speed! Traveling mercies! God be with us!"
another friend of a friend, just letting you know that there is one more family out there praying for yours and hoping that everything will go as well as it could possibly go. miss clara is beautiful!ReplyDelete
Write too much?? Are you kidding?! Your fan club is checking for updates every time we pass our computers! We are hanging on to EVERY word. The pictures really do speak their thousand words! I hope today will be a stack of 24 GOOD hours!ReplyDelete
I found your blog through olivia's. Our Ruby was on ECMO for 26 days. She turns two in a couple weeks!
Feel free to contact me if you have any questions or need someone who understands. Ruby's site is www.rubyhope.com
Holly mom to Ruby LCDH Survivor
After reading your post,I went back and touched your words ~ praying over them specifically...once again, may Clara, you, and Robert gain strength from knowing that our thoughts and prayers are with you all. Love, Mary Ann & Chuck MartinReplyDelete
I just want to say that Chrissy, you and Robert are very amazing people!! You have reached way down and pulled up the very best that people have, and trusted in God. Both of you are wonderful writers - explaining everything so well. I feel as though I am there at the hospital with you! I continue to pray for Clara. Love, Jodi PreslarReplyDelete
Hi Chrissy and Robert. First of all, Clara is so beautiful. What a precious child who is so, so loved. You two are amazing people and now amazing parents. (Yes, I have never met you, but I have been keeping up on your blog!) I am a friend of Trey's and your mom and wanted to let you know I have been and will continue to pray for your family, your doctors and especially, Clara. Many people are FBC Raleigh are praying as well. Take care and know you all are on many prayers' hearts and minds.ReplyDelete
Just a note to tell you that we are praying for your whole family. We know how difficult this is for you as we were in the same boat 18 months ago. Our daughter, Emery spent 16 days on ECMO and each minute, day, week of her 76 days in the hospital felt like an eternity. This journey really is a test of patience, strength & faith. Please know that there are many, many people on your side. I know you do not know us, but if there is anything we can do, please do not hesitate to ask. Meanwhile, stay strong and take good care of yourselves and each other & may God continue to bless & protect you.ReplyDelete
The Ellis Family
She is beautiful! All Pierces and Browns are praying for Clara and for your whole family. May God Bless and Keep You. May His Face Shine Upon You and May you feel his Grace, Strength and Comfort.ReplyDelete
Praising God for answered prayers so far. Father continue to hold little Clara in your bosom and continue to heal her little fragile body AmenReplyDelete
Ronnie and Joanne
My prayers are with you guys. What a beautiful baby girl you have! May God lift her up in his grace and give you all the strength and peace you need as you travel this journey. God Bless you baby Clara!ReplyDelete
Praying that God will continue to provide peace and comfort as baby Clara grows stronger each day. My love and prayers are with you .ReplyDelete
Chrissy and Robert,ReplyDelete
Clara is beautiful! I'm holding you in the Light, praying for strength and comfort as you run the race. Love to you all.
Chrissy, your words express so beautifully your deep love for your amazing gift from God. Your updates help me petition on Clara's behalf and I believe God is particularly pleased when His children come to Him with specific requests and with the assurance that He hears and answers. I rejoice with you and Robert- the opportunity for Clara to be on ECMO, excellent doctors, a loving and caring family and friend supportsystem, and each encouraging piece of news you receive. Hold onto that hope as you walk through the difficult times.I continue to pray...ReplyDelete
Stay Strong and know that God is with you all holding you up. I can't count the times that Ava's life has been a roller coaster ride for us. You will look back on this all and wonder how you lived through it. "Always carry Hope!"ReplyDelete
You are not alone. If you need someone to talk to please feel free to email me anytime.
~Terri and Ava Helmick
Chrissy and Robert-- Please know that Daniel and I are both praying for you and sweet Clara.ReplyDelete
I am in Winston-Salem and am happy to help ANYWAY you need. I am praying with you for little Clara!ReplyDelete
This verse brought me much strength while Finley was in the hospital...ReplyDelete
God is there with you...each minute. And God's army is out here praying and lifting your family up.
"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart."
mama to Finley L-CDH Survivor 8/12/10 and Rowan 8/17/07
Clara is so beautiful! I love her curly, dark hair. I'm praying for you all throughout the day. God's peace be with you...ReplyDelete
My name is Amanda Sprayberry. Our son Landon was born January 17,2011 with CDH. This journey is very difficult,trying, and nerve racking. We also had to deal with the ECMO roller coaster. Landon had to stay on for the full 14 days but you really do have to take it minute by minute on ECMO. Everything is always changing nothing ever seemed the same. I pray that your little girl fights through this horrible disease. Our son is an angel now but please keep your faith and keep praying. More importantly spend every moment you can with your sweet baby.
Many prayers to your family,
The Underwood family and the Knollwood church family are all praying for the beautiful Baby Clara and her Mom and Dad! We send our care, hugs and positive vibes!ReplyDelete
Roger, Sharon, Caleb and Kt Underwood
I wanted to mention that when my son, Elijah, was on ECMO I was devastated. I'd heard of all the complications that were possible and thought that the risk maybe outweighed the benefits; however, after talking to the ECMO director, I found out that research is actually starting to show that ECMO babies do BETTER in the long run! Such great news, and so far it's true for my son. He has NO lingering problems (outside of the slow weight gain, which is not ECMO related).ReplyDelete
Continued prayers coming your way :D
Mom to Elijah, LCDH survivor