Well we have been home from the hospital for almost a week now... life finally feels like our "new normal". Sigh... Hadley is doing amazing! She is melting our hearts hourly and bringing great joy to our home. I think that Avery and Ben might disagree at moments, with Hadley's crying and their grumpy, sleepy mommy. But truthfully we know blessings, when we see them and we feel blessed. So, where do I begin?
Let me start with giving God the Glory He deserves. One of my best friends put it this way... and I loved it so much I am stealing it and repeating it! Thanks Jess! "It is not every day, you get to quite literally witness God performing a miracle of healing in front of your very own eyes."
The medication Hadley is on, propranolol is truly a miracle drug. It is healing her hemangioma daily. Within two days, we could all tell a huge differance in the color and thickness. While giving our sweet 7 week old medicine every 8 hours is not what we "planned". We are continuously renewing our minds of the truth of what God is doing in our lives with this drug. We are reminded of the countless families who have prayed for healing of their children's hemangiomas (some life threatening) and WE... are getting our prayers answered YES! We are truly fortunate. God heals supernaturally and also by medicine... we believe that. We are also no strangers to this medication. The way we know about it... I could say it is ironic, but I prefer to see it as God's redeeming Hand in our lives.
The treatment of propranolol in treating children with hemangiomas was an "incidental finding". In 2008, several physicians in Denmark were treating some young babies with large hemangiomas with high doses of topical steroids. Sadly, those steroids caused a potentially life threatening heart condition in those children, called a cardiomyopathy. In order to treat the medication induced cardiomypothy, they stopped the steriods and put the children on propranolol (which helps control blood pressure). After the propranolol treatment was started and the steriods were stopped, they discovered that the hemangiomas were disappearing. This is a very laymans version to the story, but the propranolol was healing the hemangiomas!!! It is truly an amazing finding. I am unaware of the prognosis of those precious children who suffered the cardiomyopathies. It is my prayer they are healthy and well today. My mother's heart is touched deeply that someone elses child had to develop something so serious, so that my child could be healed. I do not take that lightly...
So the "ironic" but not so ironic thing is... the heart conditions those children developed is the very same heart condition that caused our first daughter, Payton to die. And the very same medication (propranolol) that is healing Hadley, is the same medication that gave us more time with Payton. She was on it too. We are eternally grateful for this medication. It is a miracle in a bottle, that God has used to bless our children with. While we say that, we also recognize that it comes with it's potential risks. We have been assured that the chances of Hadley experiencing side effects is rare (low blood pressure and low blood sugar). But "rare" doesn't really mean much to us any more.... So we will always be alert to Hadley's feeding and overall physical appearance as long as she is on this medication. But we are not allowing fear to rule. Our God did not give us a spirit of timidity and fear but of power, love and a sound mind. We believe He did not bring us to where Hadley is, only to not bring her all the way to complete healing. So we are, as my good friend said, "Watching God perform a miracle... as He is healing Hadley before our very own eyes."
Thank you so very much to everyone for all of your prayers. They MADE a differance. We are truly touched and amazed at how much support we have been shown. We feel like after last weekend, we can now take a sigh of relief. God has also guided us, through the amazing hands of several physicians that have been remarkable in Hadley's care and have advocated for us in ways we didn't know we needed.
Dr. Satterfield, Hadley's opthamologist has been a priceless advocate for us. She has connected us with other physicians and sped up the process of being seen by them exponentially, she has helped get medical records and information to us in a moments notice, she calls us regularly to see how we all are, she completely supported us through Hadley's admission to the PICU and the time we were there. She was sensitive to our hearts in our revisiting the PICU after all we have been through there with Payton and losing her there. And she quite literally has given me her cell phone to call her to reach her quickly for when I've needed her support. I cannot say enough good things about her, we are humbly grateful for her support and care. If only all families could recieve the kind of care she has provided us and Hadley. She makes this world a better place.
Several other amazing doctors have made a priceless differance in our lives. Dr. Asaikar (neurologist) who has assured us through decades of experience, that Hadley is going to not be affected by the cerebellar issue, and has called us at home, counseled us, encouraged us and reminded us to "enjoy" Hadley, to focus on her and not the circumstances we are in. It was he who made a personal call to Dr. Satterfield to get Hadley seen the very next day. It's Dr's networking and caring enough to help parents navigate the "system" that has helped make all the differance.
Dr. Wright (cardiologist), Dr. Kilmer and Dr. Frieden (dermatologist), Dr. Wong (the WORLDS BEST pediatrician) who have collectively spent hours counseling, encouraing, and advising us in Hadley's care. These are some of the best pediatric physicians around. As well as all the caring medical staff who took care of Hadley in the hospital. I wish I could write about each of them. I will say one thing... if you do not like your child(ren's) pediatrician... I would like to encourage you to search on till you find one. Dr. Wong has been with us since having our sweet Payton and he has quite literally held our hands through the past almost decade of parenting. He continues to guide us, listen to us, truly hear us, advocate and provide excellant medical care for our children. But he also does so with a huge heart. He cares.... and it shows. We are blessed.
So with all that said... our baby girl Hadley is doing wonderfully. She is tolerating the medication well. We are praying for continued healing, and that the hemangioma responds well to the treatment and goes away. She will likely be on the medication for at least 6 months. So please continue to pray for Hadley to have no complications with the medicine and for the hemangioma to cause no problems with her eye or overall health. We are not expecting it to, we are expecting it to heal and go away over the next couple of months.
In the meantime, we are going to be busy loving her, caring for her, and enjoying each and every milestone she meets. We will be sharing as our journey continues.... love to each of you and thank you so much for your prayers and support.
