|
|
Jacob Aaron |
 |
 |
After my discharge, we received some alarming news from the attending pediatrician (whom we now love and depend on) that her gut told her something wasn't right even though the chest x-ray wasn't really "abnormal." We were shocked to find out that he had a murmur that had come and gone since delivery. Initially they weren't concerned because "lots of babies have murmurs." However, we were fortunate that a nurse noticed the records showed it coming and going and thought they should give it more thought. Long story short: an alarming echocardiogram (the best that our hospital could do without pediatric cardiology equipment) showed critical aortic stenosis. We had a crash course in cardiology while waiting for the helicopter to airlift Jacob to Little Rock's Arkansas Children's Hospital. In shock and both of us terrified, we turned over our child and our hopes to the crew and God. We cried the two and half hours it took to get there fearing what we would learn upon our arrival. We prayed and made phone calls and mostly cried. Once arriving, we learned that his stenosis was moderate, and that he was also unfortunate enough to have a blocked lacrimal duct. He was born with a swollen black eye that we thought was from the c-section. This was another roller coaster ride as we listened to the theories from tumors to syndromes on what caused that odd looking "asymmetrical" eye. Fortunately, the ENT and ophthalmologist reassured us with their diagnosis and that it (the "asymmetrical eye") was an optical illusion. However, we requested chromosome testing which we have since been told is "normal." The eye thing has resolved itself, too. Thank goodness something has!!!
Our last echo in November showed mild/moderate aortic stenosis and the PDA. We have another appointment on March 25, 2005 and we are soooo nervous. Since last June, we have learned a lot more than we ever wanted to know about CHDs. I have learned that no matter what I did or, more importantly didn't do, during pregnancy probably didn't cause this. But there are nights that I am haunted by what happened although I know no answer would make a difference. I was very angry about trying so hard to be "perfect" and it not changing things. I hate it that my little boy will have to worry about and fear things that other kids don't have to deal with. My husband and I have gone through all of the emotions ranging from the dark days of an overwhelming sense of fear of not getting to see our little hero grow up to the profound appreciation when someone tells us a survivor story or seems to give us the encouragement at the perfect time. There are days that I literally feel God holds us in the palm of His hand. I would never want to have any other child or wish for Jacob to be different. I love him so deeply just as he is and I am thankful to live in a place and time where a CHD is diagnosed and has available treatments. I am also glad that he seems to have the determined strong willed spirit of a dare devil. He is a lot of work to keep up with these days, but I am so thankful for his approach to life. He will need the determination in the future. More than anything we want anyone to know, is that we love our child and want the future to hold miracles for him.
June 2005 Update
Our March 25, 2005 cardiologist appointment at Arkansas Children's with Dr. Sachdeva went well. She let us try doing the echo without sedation (against my warnings that I cannot keep him still for a diaper change) and he was excellent for the echo tech. He made a liar out of his mother for the first of what I am sure to be many times to come. The mean on the gradient for the stenosis only went from an 18 (Nov. 04 visit) to a 20. This kept him in the mild range. although I was slightly disappointed that the gradient increased at all. The peak was a 40 (up from a previous 33) and that scares me a little, but the cardiologist seemed unconcerned. The leak was "just a trace" and the PDA is "tiny." At this point, no worsening feels like a miracle and good news. We will take what we can get each visit to escape the feeling we had when he was airlifted at 3 days old!!! Sometimes I think I have post traumatic stress from that day, and others I realize we have learned to live "normally" even though I thought a year ago that was an impossibility! Michael is so proud of his little boy and calls him "little buddy"—they are the best of friends.
On May 31, 2005, we celebrated Jacob's first birthday. I tear up with the pride I feel in this little boy of ours. I look at him and think surely he must be the most beautiful, smart, wonderful human being ever. I guess that's just a mother's love. I am learning to look much deeper into his heart and far beyond CHD. The depth and strength of his heart amazes me. I see his determination, sweetness and perseverance as I watch him learning to walk, talk and take in all these new experiences so bravely. I wonder how he will ever know how lucky I feel to have him in my life. I am still nervous about the future, but so happy and able to cope with what we have TODAY, that I am not as focused on it as I once was. I still have faith that the Lord is watching over Jacob, and that Jacob's place on earth is not an accident. He is here for a reason, and for now I am so blessed to be his mother and to be learning from him. Many things he teaches me are life's lessons that somehow had escaped me until he came into my life.
To all of my new C.H.I.N. and PDHeart friends, your support and stories inspire me. They are a huge source of strength in the wee hours of the night when doubt pervades my thoughts. To all of you, I am thankful for you and your children. Thank you for sharing your stories so that we have them to look at for reassurance in the miracles of medicine, the human spirit and the work that God does for our children. To all of the doctors who care for our kids, I am so thankful that you are willing to take on risks and passionate about these children's health. To my personal family and friends, I could not fathom the thought or possibility of facing a surgery with Jacob if not for the knowledge that when the time comes, you all have us in your thoughts, prayers and will support us in whatever way we need.
Until our next visit (probably in August 2005), we are plugging right along with a fabulous little guy who has mastered his first steps, finger foods, a few words and remains the love of our lives.
August 2005 Update
Jacob had a cardiology visit July 22, 2005. We were surprised when the cardiologist told us that Jacob had climbed into the moderate range—although just barely. They presented us with a "plan" to close the PDA by a coil occlusion during a heart cath. The heart cath was scheduled for 8-19-05. The plan was to do a diagnostic cath—mostly measure the aortic valve gradient, then put the coils in, the re-measure the valve gradient. It was hoped that the coils would help the aortic valve gradient come down. I guess the only way to explain it is to compare it to water through a dam—the more water, the more force, thus less pressure on the valve. The PDA was causing the blood to divert or leak so not all of it was "swooshing" through the valve. If the gradient didn't come down, the "plan" included a balloon dilation of the valve.
We feel very blessed because the cath went great. The gradient in the beginning of the cath was mild (down from 32 at July's echo to 20) and the PDA was successfully closed with the coils. No other procedures were necessary, Jacob tolerated it very well and we were home before we imagined possible. We could not have asked for better doctors , nurses or staff and our parents/families and friends were wonderful. We will face our next echo, always a nerve-wracking experience, in 4 months or so...but for the time being are so thankful for getting past this little "heart milestone" without complications. Thanks for reading our story!
May 2006 Update
Jacob is now 3 years old. He has had his PDA coiled but it is still has a residual leak. He had a cath in Aug. 2005 at 15 months when 2 coils were placed in the vessel. The PDA occlusion did improve his gradient and in October 2006, his stenosis was in the mild range with mild aortic leak. He is very active, very big for his age, and talks a mile a minute. We are very proud of him and hopeful that many years will pass before any other treatment becomes necessary. He is scheduled to start preschool in August 2007, and while nervous for him, we are excited to see him growing and changing like any other 3 year old. Our next echo is not until October 2007 (we are now going yearly) and we hope that minimal change has occurred to his heart function.
