Chase had his cardiology appointment this morning with Dr. Horne. At his last appointment 2 weeks ago, we were told he had a coarctation (narrowing) in his aorta. We were hoping for good news this morning, meaning the narrowing hasn't gotten any worse. Unfortunately, that isn't the case.
He was originally scheduled for his first heart cath on March 29th. However, his echo this morning showed the coarctation is now measuring 3 mm (it was 4.3 mm 2 weeks ago). His blood pressures indicated the same findings as the echo, as they were lower than before. Thankfully his pulses are still very good, which means his blood is still moving throughout his body just fine.
Based on the findings this morning, Dr. Horne didn't want to wait until March 29th for his heart cath. Instead, they told me it would be March 1st. After we came home from the appointment, I got a call from the cath lab at MUSC telling me his cath has been moved to this Thursday, February 25th! I have SO begun freaking out big time. I'm already scared and nervous for the cath lab procedure since he'll be under anesthesia, but I'm also worried about the coarctation. At his last appointment, Dr. Horne said a balloon procedure to widen the narrow section (during the cath procedure) would probably not work because he felt that it would just return back to its current size. What this tells me, although we'll know MUCH more after next Thursday, is that Chase is most likely going to have his next surgery, the Bi-Directional Glenn, VERY soon... most likely within the next 3 or 4 weeks. They'll need to surgically address the coarctation and that will happen during the Glenn. So, assuming Chase's lung pressures give him the "go ahead" for the Glenn, I'm thinking it's possible we'll do the surgery the week of March 1st. This is just my best guess -- obviously I don't have a medical degree.
This is how I'm looking at this (VERY SCARY) situation: Typically, heart babies have a very difficult time gaining weight, so they usually like to schedule the Glenn around 6 months of age to give the baby plenty of time to grow, put on weight and allow their lungs to develop. Chase is a big boy. He weighs about 14 lbs. and is almost 4 months old. He's VERY good at eating. He's growing. He's thriving. He's putting on weight like nobody's business! This is all very good, except it means that he could outgrow the BT Shunt that was placed during his first heart surgery. SO... (I hope you're able to follow my random train of thought) If we had waited until the end of March for his cath, there's a good chance my big boy could've had a problem with outgrowing his shunt. Perhaps this aorta issue is God's way of having us take care of his next heart surgery sooner than later to prevent possible problems. Seriously, I don't know if any of that makes sense or if it's even overly accurate from a medical perspective, but this is just one sweet little heart baby's mama sharing her thoughts and feelings about her baby boy.
I'm curious and very anxious to hear from other heart moms who have gone through the Glenn earlier than expected. I'm so scared but my hope is in the Lord! He has a perfect plan for my sweet Chase's life and I am fully committed to Him and His will.
Please pray for Chase as we prepare to head back to MUSC for another procedure and very possibly, another surgery. We'll need to work out housing and childcare and all kinds of fun stuff like we did for our previous stay in Charleston, but we've got less than a week versus 18 weeks like last time! Please pray for all the pieces to fall into place and for God to keep His hand of protection around our baby boy. And pray for me. Have I mentioned I'm scared? I hate the uncertainty of what lies ahead, but I know Who sees our future and I'm trusting in Him.
First of all, BIG HUGS! I know this is a scary time. Yall have made it these four months and Chase is doing awesome, despite the coarctation! It sounds like the doctors are on top of things, and that is a GOOD THING! I'm glad the cardio. is monitoring Chase so closely.
Emma Kate had her Glenn at 5 months and she was just over 11 pounds right before her surgery. They seemed to think she had enough body fat to do well in surgery. I don't think that 4 months old is too "young" for surgery. Seems right on track to me. Honestly, I think that good cardiologists are going to be really in-tune with their patients and obviously Chase is telling him that its time. Does that make any sense? If the doctor waited until Chase was a few months or even a few weeks older, it might be really bad news. Yall seem to have a good medical staff on your hands.
All that said, I will be praying for you. Caths are scary, too. And you will have a lot on your plate the next few weeks. Please let me know if you need anything. You know how to contact me!
I feel for you!! It seems like life with a "heart baby" is sit around and wait and then go,go,go... Aly had her 2nd surgery at just a few days over her 5 month bday and she was only 11 pounds. Chase has shown what an amazingly strong boy he is and I'm sure he will continue to do amazing!! Sending prayers and heart hugs your way!!ReplyDelete
Thinking and praying for Chase--and you--to come through this okay. Keep us posted and hang in there!ReplyDelete
As I've read how big Chase was getting, I've been wondering if his Glenn would be sooner. Knowing that God never makes a mistake, I think the aorta was a way to say it was time. Yes, you have less time to get things in order, but you also have less time to have to worry and think about the surgery.ReplyDelete
When you need something to smile about just remember-this means that in a couple of months you will finally be able to break free of your prison and take Chase out and about!
We will all be praying for you as you go through these next few weeks.
Jackson (DILV, COA, TGA) had his Glen when he was 5 months old and >15 lbs. I don't think that there is a "specific" time that it has to be done... each doc seems to have their own school of thought on each and every topic having to do with these babes. We will be going for our heart cath on April 5 (to close the hole that they left (on purpose) during the fontan). So we're right there with you!! If there is one thing that I have learned during all of this it is that worrying doesn't do a bit of good. I have always been a chronic worrier so imagine throwing a heart baby into the mix! In the beginning I used to research his defect and try to find out what the "statistics" were on his defect. I literally worked myself into a tizzy. Dr. Lucas told me not to ever sit and worry over something like that again without calling him, and to stop looking at the internet(the research is at least 5 years old by the time it is published). He also told me that it was his job to worry about Jackson and my job to be his mama. I have tried to live by that motto (as hard as it is sometimes). I came to the realization sometime before Jackson's second surgery that all of "this" is out of my hands and that God is in control and no matter what the outcome, He has a plan and a purpose for Jackson. Believe me, this has not always been easy to live by but it has gotten me through the tough times.We will be praying for Chase, his doctors and nurses and all others that will have a hand in his care,and for peace and comfort for you. Just remember that the Greatest Physician of all is in charge (oh, and having MUSC on your side doesn't hurt either!!)ReplyDelete
Love Much, Laugh Often, and PRAY Hard
Thinking of you....going into caths and probable surgeries are so difficult. The "what ifs" can really get you down. But like the other mom's said above, worrying isn't going to get you anywhere. I think it's about impossible not to worry but try to just stay in the now. I have lived by this quote and constantly have to "check" myself with it- "Don't let tomorrow take away from today".ReplyDelete
As far as Glenn's go, Maddie was barely 4 months and 12 lbs. even for her 2nd surgery. She did amazingly well and we were home 5 days after it. Ironically, we were in the hospital longer before her Glenn from her cath to the surgery (like you, we bumped up her cath then waited for a week until they could do surgery and we were thankful we had a week to wait).
Keeping you in my thoughts and Chase in my prayers. Hang in there! And thanks for your comments on our blog, I love meeting new heart families!
Katie (Maddie's mom, HRHS)
It has been a very long time since I commented on your posts. That does not mean, however, that Chase (and the entire family) have not been in my prayers. I think about you and pray for you daily, and this week will be even more. You and Chase are special to us, and even more to God.ReplyDelete