It’s hard to believe that four years ago I didn’t even know what heart defects were. I didn’t even know that some of the families I knew at the time were heart family survivors. I thought they uncommon and rare. When Jacob was born all that changed.
The moment we were life flighted to the hospital and he was diagnosed with Transposition of the Great Arteries my eyes were opened and our lives changed forever – for the better. Yes there have been many scary moments and I would have never wished or wanted our son to go through heart surgery and all the things he did, but we have grown through it and our lives are more enriched. I have met amazing people and made lifelong friends. My faith has grown in ways I never knew possible and I have found an amazing cause worth fighting for. (There are a lot of amazing causes worth fighting for – but sometimes there is that one that you feel connected to.)
On Saturday our local Children’s Heart Foundation chapter held a family picnic for CHD survivors and their families. It was fun and amazing to see Jacob running around with all the other kids and to chat with other heart moms I have come to know and love as we pray for each other, cry with each other, and celebrate and cheer with each other.
There was face painting and games and some great reminders about the importance of research – (which is what the Children’s Heart Foundation funds – research for Congenital Heart Defects). Our cardiologist was even there and it is always wonderful to see him (out of the office of course!).
We hope this new tradition of the Heart Family picnic continues and that next we can see the return of the Lion Heart Festival in addition.
Filed under CHD, Heart, Jacob, TGA
I have written a number of times about going to the hospital and helping out with the three main holiday meals: Thanksgiving, Christmas, and Easter. I just starting to realize that it was getting close when I got an email for the woman who organizes the dinners. She organizes the dinners at three separate hospitals; of course we always go to the hospital where Jacob was. She had a major last minute break down for two of the hospitals, one of them being Jacob’s. She asked me if I could talk to our congregation and friends and see if anyone could help out at all. The email came in the middle of the week before last, just as we were headed into our week of sickos. Needless to say, it got shunted aside as I ran after kids with mop and bucket in hand, and fought off pneumonia (Jacob is doing fabulously now by the way, his cough is nearly cleared out completely, fever gone for a while now, and back up to his energetic self).
On Sunday while at church I suddenly remembered the desperate need for food for the Thanksgiving dinner. Paul raced home to write down what was needed from the email we were sent. We made up a sign-up sheet and passed it around to the women.
I didn’t think that we wouldn’t get a good turn out, I just didn’t expect this big of one. In just one pass of the sheet, we have almost everything we need to provide for both dinners! And I still have a week and a half to gather the last of the donations needed. I am so excited that everyone came through for the cause. These dinners mean so much to the patients and parents at the hospital, they mean a lot to me, from the experience we had. To race in last minute with everything needed to carry the dinner on makes my heart smile. I’m not congratulating myself by any means, I’m congratulating the awesome people and friends at church that have given so generously from their heart to make it all happen
Filed under Heart, Religion
We were home at last and had picked up all the kids and we were trying to figure out what to do for dinner when our doorbell rang. Not really feeling up for visitors, but understanding if someone had stopped by to see Jacob we went to answer the door. No one was there, just a bag with dinner, bubble bath for the kids and some coloring books, 2 cds with relaxing music on them, and a note. All the note said was, “Hope Jacob’s tests went well today. Now, have a relaxing evening. Love, your sisters.” I cried. Our lives have been so full of these mini miracles as the big ones. And we have had a relaxing evening, and now I get to rock my boy to sleep . . .
My son has a Congenital Heart Defect (CHD). He was born in March, adorable, snuggly, starving, and seemingly perfect. It was a moment when nothing could possibly go wrong he was ten days old, gaining weight and loved a good cuddle. I gave him one last big snuggle and then left him and two of his sisters with grandma while I took the other sister on a mommy daughter date. I had no way of knowing that it was the last time I would hold him for another 2 weeks, and possibly forever. Life was perfect and wonderful, then I came home. The first thing I heard as I walked through the door was my frantic mother-in-law saying something was wrong with Jacob. I rushed into his room and there he was in his crib, eyes closed gasping for breath, moaning, limp, and non-responsive. I remember thinking at least he isn’t blue yet. I have never been so scared in my life. I called my pediatrician and talked with our incredible nurse and was told to bring him in straight away, but if he turned blue to go straight to the ER. I charged for the car and zipped over to the doctor’s office, only 2 minutes away. I grabbed my boy and charged in with the blanket on his head to keep the wind off, he must have turned blue in the two minutes it took to get there because the nurse snatched him out of my arms and went charging across the street to the hospital ER. We pounded on the ER door and before I knew it he was stripped on a table with doctors swarming around him responding to a code blue, wait it was my sons code blue! What was happening? Bewildered and shocked don’t even come close to the feelings that were charging in on me from every side. My pediatrician came in on his day off and my husband came rushing out from work. The Bishop from my ward (congregation) met us at the hospital. I’d like to say I was the picture of calmness and confidence and that I held it together so well, but I didn’t. I was a basket case, sobbing, scared and praying my heart out.
They stuck a breathing tube down his throat but nothing changed, and that is when they knew that he had a heart defect. We were grilled, any history of congenital heart defects, and they rattled off a few, to which we shock our heads blankly wondering what the jumble of words even meant. Then they were talking about transport to ICU in Emmanuel Children’s Hospital, and I knew we were in for a ride. They called for ambulance transport but when it arrived it was 5:30 p.m. and they were worried that with the traffic he wouldn’t survive the trip, in fact they weren’t sure if he even had another 20 minutes, so life flight was called in and my husband and I watched as the helicopter landed from our car and then we took off.
When we arrived at the hospital we raced up to the ICU and stopped dead in our tracks. There was a huge sign hanging on the ICU doors: STOP! EMERGENCY SURGERY IN PROGRESS! We knew it was our son and so we let them know that we were here and went to wait for a nurse to come explain what was happening. We were informed that his condition was called Transposition of the Great Arteries (TGA). His Aorta and Pulmonary arteries were switched and so the blood from the lungs with oxygen wasn’t making it out to his body it was just being sent back to his lungs. He was basically suffocating because he couldn’t get any air. They were doing a special procedure that would open a small hole in the wall of his heart that would allow the blood to mix and oxygenize to keep him alive until surgery. They had to do it in his room because he was close to death when he arrived and they didn’t have time to set up the lab. Well it worked and he stabilized a bit and we had to wait until his body recovered from the immense shock it had underwent. Doctors explained to us that his condition was correctable through a surgery call the Arterial Switch Operation (ASO) in which they do open heart surgery and switch his arteries and all the little connecting vessels that go with them. It’s amazing they can even do all that. Jacob had surgery on Easter Sunday. He had priesthood blessings, countless prayers and fasts from all denominations, and the service we received from members of the church was amazing. We witnessed so many miracles. We finally made it home after 2 weeks in the ICU, 1 week on the regular pediatric floor, and more scary moments of collapsed lungs and low oxygen levels. He is doing fine now. 30 years ago he wouldn’t have lived much beyond his teens with the operation they did then, and 10-20 years or so beyond that he just wouldn’t have lived. I thought my life would somehow return to normal, or as normal as it can get with four kids, but my life is now filled with doctors appointments and worries of development and lung problems. But I will choose every time to have these struggles and have my son than to have to bury him. I now know tons of families that are “Heart” families where before I knew maybe one. I thought heart defects were rare, but they are more common than childhood cancer. And I live everyday grateful that I have a son that I can hold and snuggle and kiss on his cute little head. I have come to realize that we never know when we might hold or hug someone for the last time, so I give my kids the biggest hug every day just in case. I’m sure they will love that as teenagers. 🙂 God is a God of miracles I see them every day.