It's been a busy Monday of doctors' appointments, but we have more good news to report. This morning we met with the cardiologist and had an echo done to evaluate the state of Clara's pulmonary hypertension. The drug sildenafil that Clara came home on is to treat pulmonary hypertension and we were told to expect her to stay on this medication for many months since most of these babies still battle varying degrees of pulmonary hypertension for quite some time. Last week when we pulled out the NG tube and had to begin giving this medication orally I had a small panic attack. Clara was spitting it out and we were having a horrible time trying to get it in her. I called cardiology in a tizzy last Thursday, begging to drop one of the three doses and asking about the repercussions of her missing the doses that she either spit up or threw up. They told us just to do our best over the weekend and we'd re-evaluate on Monday at the appointment. Today, we were so pleased to hear that her echo looked completely normal. [SIDENOTE: It was so fun to see some of the sonographers we loved and saw every day for awhile when Clara was so very sick. One of them scooped her up today and started parading her around the office saying to anyone who would listen, "This right here is a MIRACLE baby! Look at this baby who lived because of love and prayers! Let me show you this incredible miracle I'm holding...." So precious.] The damage that her right heart sustained while on ECMO when she began to have right-sided heart failure has completely healed and reversed itself. They said that her heart looked totally normal and healthy and that they could not even see any indicators of pulmonary hypertension any more. Soooooooooo.... we get to stop taking sildenafil! And we don't follow up with cardiology again for another six months. This was better news than we could even have allowed ourselves to imagine! Clara is especially relieved that her dad doesn't have to force that stuff down her throat any more. (Her daddy is pretty relieved, too). Goodbye and good riddance, pulmonary hypertension!
After that appointment, we went back to the 6th floor and paid a quick visit to some of our friends in the NICU and PICU. It was absolutely surreal to get off those elevators and walk those corridors like we did so many times for eleven weeks, but to be pushing Clara in her stroller and be on the outside with her. It was really indescribable. It was good for our hearts and souls to see a few of the people who we came to love so dearly during our time at Brenner. While we don't miss anything about being in the hospital, we do miss the people. They were like family to us and loved us so well. It was good to see some of them again.
We had about an hour and half before our appointment with Dr. Turner, and not really enough time to go home, so we went and got some lunch. Mom and I decided to go to Cagney's, the diner around the corner where we used to eat lunch a couple of times a week while Clara was in the hospital. It was another surreal moment to be sitting in that restaurant, drinking the same sweet tea and eating the same fried okra with Clara in the booth beside us, snoozing away. We had so many conversations in those same seats about medications and numbers and doctors and prognoses and diagnoses. And there we were, with Clara, just soaking her up and praising God for bringing us to this point. There were many days we sat in a booth there and would never have thought today would have come. It did. Boy, did it feel good.
We headed back to The Baptist to see Dr. Turner this afternoon. He was also very pleased with how she's doing. He said from listening to her breathe and by looking at her last chest x-ray (which was in May) that he could not tell that she had ever had a diaphragmatic hernia. He said her left lung is now full size (or close to it) and that she's doing just great. He gave us warning signs of some of the complications that may crop up in the future and things to be on the lookout for, but sent us on our way with another follow up in three months. Goodbye and good riddance, hypoplastic left lung!
The scales all differ, so it's hard to say exactly how much weight Clara has gained since pulling the NG tube last Wednesday, but our guess is at least a couple of ounces, maybe as much as four or five. We pray for continued weight gain, lots of good eating, and some deep and restorative rest in between. Clara has been spitting up/throwing up a decent bit the last week or so, as many babies do, so we pray that this is not enough to cause her to stop gaining weight and doesn't require further treatment.
It's hard to believe that she is on no medication now besides the Vitamin D that all breastfeeding babies take. She has no oxygen. She has no feeding tube. She is in great health and continues to amaze and surprise the entire medical community. Tomorrow she has physical therapy and we'll visit the pediatrician again on Thursday for an official weight check. Then, on Friday, we're heading to Beech Mountain for our first overnight to celebrate the Fourth of July with family.
In addition to the near out-of-body experiences of walking down the 6th floor hallway and eating lunch at Cagneys today, I had a third rush of emotion tonight as I nursed Clara before putting her to bed. I held her in the glider, in her room, clean and warm from her bath and smelling faintly of the baby lotion we'd coated her down with, just breathing in her very essence. We rocked, she ate and snoozed, and I prayed through tears a prayer of tremendous thanksgiving and gratitude. I will never understand exactly why Clara was born with this diaphragmatic hernia. Even less though, do I understand God's grace and mercy for us and the enormity of the miracles He has performed and continues to perform. I just can't believe how blessed we are and what an incredible treasure this sweet baby is. There aren't enough words to express how full my heart is and how thankful I am to our Lord for his never-ending mercies. Suffice it to say, that today's reports have left us tickled pink.
Thanks Be To God.
I wore my Praying for Clara Hardy shirt one day last week...I prayed for her...she is still in my thoughts and prayers...she has been such a blessing to me! Love, Mary AnnReplyDelete
I had goosebumps all the way through this blog, as I have had through so many others. I am forever grateful that God chose to heal beautiful Clara. She is truly a gift to us all.ReplyDelete
Rebecca Hethcox Smith
This is such an amazing post to read. Praise God for all the faithful prayers of your friends and families, and for his FAITHFULNESS! So excited to see Clara continue to flourish!ReplyDelete
Marissa (Morgan) Joyce
What a wonderful report and how wonderfully God has blessed Clara. Thank you for sharing this good news.ReplyDelete
I am rejoicing with you tonight and sharing tears of thanksgiving! God is and has been sooo good through this journey! I especially love the last "tickled pink" picture as I imagine Clare Mae is saying, "PRAISE JESUS!!!!!"ReplyDelete
My family will continue to be prayer warriors for Miss Clara as well as you and your husband!!!! Now, relax and enjoy that sweet baby!!!
AMEN! She is a BIG Miracle and though it saddened me greatly to see you all go through such an experience, Clara has been blessed to have YOU TWO as her parents. The remarkable healing of her body too awesome for words. Our Lord is so much larger than we can comprehend. Thank you for sharing Miss Clara journey with us!ReplyDelete
Just amazing to read about her progress. And to see pictures of her sweet, smiling face...you'd never know by looking at her the struggles she underwent during the first couple of months of her life. I'm so happy for ya'll! Continuing to pray for her!ReplyDelete
Julie McAvoy Hover
I am so happy for you all. God bless your entire family. I know your mother is beside herself with joy at all the good reports. She has been a trooper through these last months, too. Go Clara Go. Grow Clara Grow. Thank you again for sharing Clara with us. Praise God from whom all blessings flow.ReplyDelete
Just amazing! Thank you for sharing your blog with people you don't even know. Have said prayers for you all and will continue to do so.ReplyDelete
It sure looks like your "honeymoon" isn't over but has only just begun! Oh Miss Clara Mae, you are truly amazing! Yea for your little getaway coming up with the family next week. I can't think of anyone who is more deserving of a little vacation than your family! Enjoy!ReplyDelete
My children and I have been praying for Clara for a long time and we will continue to do so, but we also praise God for this miracle of healing. What a wonderful story of God's mercy and blessings. Clara is very special and has been given to very special parents.ReplyDelete
I am still trying to comprehend the wonder of Monday. A miracle indeed...ReplyDelete
Praise the Lord!! So thankful for this encouraging report. Lots of love to ya'll!ReplyDelete
What a wonderful day. My knitting group asks about Clara each week and it has been so wonderful to give the lastest reports. Keep up the good work, Clara. You are a doll. Happy 4th to all. Enjoy your holiday. Prayers continue.ReplyDelete
She is absolutely beautiful. Such an amazing child with incredible parents. I love looking at her pictures and seeing her bright smile. Thank you for sharing her story with us and allowing us to witness this miracle! The power of prayer is amazing.ReplyDelete
This is a breathtaking miracle... :) I am so very happy for you and your family! I cannot wait to meet Clara for the first time!!!ReplyDelete
As usual, I read your posts with tears in my eyes. God is SO good and you all have been such a testament to his faithfulness and love. What a witness for so many people about the things we all hold dear. What a beautiful smile and a beautiful girl!ReplyDelete
She is a blessing such a beautiful babyReplyDelete
Chrissy, Thank you. Like so many, I became teary reading about your moment of grace and peace just before bedtime. I know that feeling from 14 years ago...and am so remarkably thankful that you have it now. Love and Celebration! SusanReplyDelete
Praise God! That is so AWESOME!ReplyDelete
Such a great post. We're so glad for you guys and so thankful for little Clara!ReplyDelete
Miracle upon miracle! I rejoice with you! God is amazing!ReplyDelete
My cup runneth over .... I can only imagine yours!!!! May ALL of you have the best vacation ever ..... relaxing, laughing, praying and "just breathing". You so deserve a happy get away.ReplyDelete
Lots of happy tears after reading this post! Thank you so much for keeping us updated. I still think about and pray for Clara everyday! This is amazing!!! She is such a lovely girl with such lovely parents!! God bless you!ReplyDelete
Isaiah 35:10 - "..... Gladness and joy will overtake them, and sorrow and sighing will flee away." (NIV)ReplyDelete
We are LOL! - Have a wonderful July 4th!
Love, Karen & Jim :)
Well...........YAY!!!! Go Clara! Everynight when I pray, she is always first. So lately it's always been, please let little Clara gain that weight. I am so happy for you! I had my friend Debbie F. give Clara some snuggles for me when she saw her the other week. I'd rather do it myself though! Prayers will continue and congrats on the great reports. Have a wonderful 4th.ReplyDelete
My heart is sooo full of awe at the site of Clara Mae, a healthy, happy, beautiful little girl. Thank you God for this miracle of life and for letting me be a small part of the prayer chain that lifted Clara Mae up time and time again. Your family is a blessing to us all. When the days are long, when disappointment or failure weighs me down, I just remember the awesomeness of a beautiful little girl named Clara Mae Hardy. Everything pales in comparison to what God has accomplished!ReplyDelete
What a miricle! We love you guys, she is beautiful! love and blessings the welsh familyReplyDelete
Wow, I don't even know what to say, except, Hallelujah !! She's just such a beautiful little angel. I just love her and am so thankful that the time has come for her to shed all those meds and tubes. May the Lord continue to bless your family and I pray that he may always hold her in his hands. Thanks for the update, I appreciate knowing that she's doing so well, but, you can tell by looking at her that she is.ReplyDelete