I can not believe I am here, at Children's in Seattle, with Gavin. Yesterday I took him for a well-child 2 month old checkup. The doctor heard a heart murmur and ordered an X-ray at Valley Hospital. By the time I returned home from that x-ray apptmt, and picking up kids from their playdates, Tim met me in the driveway and told me that doctor had called him (my cell phone was dead)--we had to take Gavin to the ER at Children's immediately. Wow. Gavin looked fine. He's had a cold for 3 weeks, and granted, he's had a funny way of breathing, but he's been thriving, is alert, everything. He didn't act he was in critically compromised health. Dr. Chan's words to Tim were: "I've called ahead to the ER at Children's. They are waiting for you. You need to find your wife."
I took the news in stride. Talking with the kids, gathering them for a prayer, as I processed this in my mind. It wasn't until calling people and verbalizing "I'm taking Gavin to the hospital" that I broke down.
The X-ray had shown that his heart was enlarged (a big sign of a problem, of the heart over-working because of a problem) and that there was fluid in his lungs.
The bottom line is, Gavin is going to be OK. They called in specialists and did an ECHO right there in the ER. The cardiologist has diagnosed him with a Coarctation of the Aorta. Basically, there is a kink in the artery that is seriously impeding the flow of blood to his extremities. Luckily, the blood flow to his brain has been fine. What has kept him alive and thriving, is the simple blessing that the PDA (artery that delivers blood from mom to baby in utero) did not fully close. The blood that was blocked in his aorta took a detour through that PDA artery and then back into the aorta and on through the body.
The surgery he needs will involve cutting away the section of the aorta with the kink and bringing the two ends together. The surgery should be done through an incision in his left side--moving some ribs aside, should give them complete access to the aorta. He should fully recover. His heart is enlarged right now, because it is having to pump extra hard to get the blood around the kink. After surgery, his heart won't havt to work so hard, the tissue will shrink back to normal, which will allow the fluid in his lungs to clear up. This is how I understand the facts at this point.
Gavin spent the night in the NICU. I slept for a few hours in a sleep room. They arent' letting him nurse. I can't bear to deny him. It is a terrible thing. But so far he has been exhausted enough not to fight it--he was sleeping when I woke up this morning. So I went to breakfast. They will page me when he wakes up. They don't want him to nurse, because he is on a medication to keep the fetal artery open, and they don't know if because of lack of bloodflow, if his stomach lining has been compromised. It's possible his stomach can't tolerate the medicine and the food. Doctors have also noted, and been concerned that he's only gained 2 lbs since birth (he now weighs 12 lbs 6 oz). He's never been a voracious eater--that could be because of the amount of effort it took him to eat and keep oxygenated. The medicine he's on, should make the blook flow more easily, giving him extra strength and rest before his surger.
I can't believe we are here. Gavin is in the same wing of the hospital that his cousin, Mia was in until just a few weeks ago--with a heart condition of his own. It has been a comfort to have Mimi and John's support and advice. They know the ropes around here better than anybody ever should. (For those that don't know, my niece Mia received a heart transplant here at Children's in November. Their story is at www.mcdonaldfam.blogspot.com.)
We are waiting for the doctor to visit Gavin. They will tell us when his surgery will be. I'm expecting it will be within the next 7 days. I am hoping it will be ASAP, especially if he is not going to be able to eat. Thank you for all your prayers and support for us here, and for the kids at home. Thank you for wonderful family, friends and visiting teachers. We will keep the blog posted with any updates--as it is the fastest way to reach all of you.
Love,
Gavin's Mom and Dad
8 comments:
Boy, that brought me to tears before even finishing the first paragraph. All will be well. Just a very soft spot for us. What a miracle that the PDA remained open. Glad to hear that the fix is relatively simple. Knowing that doesn't always make it any easier, but you guys will be back home before you know it. love you.
Your little Gavin will be in our prayers too. If you need anything, please let me know.
I don't know what to say besides thank goodness for Children's hospital. I'll add my prayers and all will be well, as John said.
Heather and Tim,
Know that Gavin will be in our prayers and thoughts. Having had our own Pieper have to go through her own heart condition at Children's, I know it's extremely stressful and heart-breaking to parents. He is surrounded by amazing doctors though and an extremely loving family. Hang in there and please let us know if there is anything we can do to help.
Hi Heather! I got this link from Leslie. I'm so sorry to hear about Gavin's heart. Parker had open heart surgery at Children's in 2004 and recovered BEAUTIFULLY!!! Is Dr. Koehn still there? He was fantastic. I even called him at home once over the weekend. Please don't hesitate to call or email me if you have any questions, need anything, or just want to talk. I know how hard this is. Heart wrenching. You and your family will be in my thoughts & prayers~
Niki
You will be in our thoughts and prayers. I am so glad that you have a doctor that really took the time to listen to his heart and find this problem now so it can be fixed before anything else happened. Hang in there! We love you!
Jeremy, Clytie, Kaylee and Lindsey
Wow. Your brother put it perfectly. You're in our prayers and we hope for a quick recovery and happy, healthy Gavin back to normal. I wish I could be there to help.
So sorry to hear about Gavin. We'll keep you all in our prayers. Stay strong! Love you!
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