We received a call from our surgeon's office this week. We have a consult scheduled in July, pre-op on August 7th, and gulp! the surgery will be on August 8th. Of this year. In a few months. In 69 days.
My heart is lurching from the knowledge of what will happen to my baby. His heart will be placed outside of his body and in a machine. They are going to open his chest up and wire it shut. He will be hooked up to every type of tube imaginable. He will have a zip-line forever on his chest. We'll be in the hospital for almost a week. If there are complications, a bit longer.
The healing process is 6 to 8 weeks, but I am positive the images will be burned into my heart forever. Ironic choice of words.
The surgeon is nationally known for pediatric cardiothoracic surgery. He's been around the block many times. That comforts me. I don't know him, but I know he is going to take care of my baby when he is on his table. This type of CHD surgery has a 98% success rate. That is a risk we are totally willing to take on!
My village is praying, sending positive thoughts, and asking what they can do for us. Honestly, all we can do is continue to pray for our family and please pray/send thoughts for the Doctor and Nurses that will be caring for Miles. Give them rest the night before, peace the day of, and a super uneventful surgery.
Miles is going to be much healthier and will have fully oxygenated blood going to all his body! He is going to be able to run and actually keep up with his 3 older brothers.
He is going to be fine.
Friday, May 31, 2013
Tuesday, May 28, 2013
Wonderful Cardiology Appointment
We went for Miles' second cardiology appointment this morning. After getting there a bit late, we called to let them know earlier; we got right in. We did have an awesome excuse since an 18 wheeler overturned and 35W was shut down.
Miles was weighed and measured...12 pounds and 2 feet tall, they did oxygen sats (98-100%) and attempted to take his blood pressure. That was funny since the nurse tried both arms and both legs...none of which gave out a good reading.
Off to the testing! A fussy baby who wants to nurse and take a nap does not make for a clear ECHO! hee hee! After a little snide remark from the nurse, about not having a bottle fed baby AND hedoesn't refuses to take a pacifier, I got to nurse Miles and help him calm down a bit. He still wasn't perfectly still, but she got a halfway decent sono of his heart and how it is functioning.
We met with our doctor and he answered all my questions and addressed my concerns (increased cyanosis, labored breathing, increased sweating, increasing clamminess, seemingly lower oxygen sats, being sick with fevers 3 times from germy brothers, etc.). Miles' heart hasn't changed and surgery is still on. We should get a phone call this week from the surgeon's office to set up an appointment time and possibly the surgery date. YIKES! It is going to be traditional open heart surgery since his heart can't be repaired any other way.
The cardiologist said that we are doing a great job since he gained so much weight. He was 6 lbs 8 oz at birth, so he is getting so close to doubling his weight at 12 weeks. He asked if he was still nursing and we said, "Yes!". He said that breastfeeding was equivalent to running a marathon and that if he was doing such a great job with nursing, then recovery would be "easier" for him. He felt our instinct was better than relying on an oxygen monitor. I waiver on this part, but understand how easy it is to watch a monitor than trust my instincts by my birth doula work. If something seems off, we know our baby best and we need to follow through.
We are looking at an August surgery date instead of September now. We talked about how the boys are in public school and they go back towards the end of August. The cardiologist felt if we went with an early August surgery date, Miles would have a better chance at a few weeks of healing time without being exposed to all the extra germs the boys will be bringing home. Good plan in our eyes. The whole post-op healing process is 6 to 8 weeks. Dale is planning on taking off several weeks to help us keep Miles home as long as possible.
It was a good, good visit. Oh, and I promise the next post will be his birth story.
Miles was weighed and measured...12 pounds and 2 feet tall, they did oxygen sats (98-100%) and attempted to take his blood pressure. That was funny since the nurse tried both arms and both legs...none of which gave out a good reading.
Off to the testing! A fussy baby who wants to nurse and take a nap does not make for a clear ECHO! hee hee! After a little snide remark from the nurse, about not having a bottle fed baby AND he
We met with our doctor and he answered all my questions and addressed my concerns (increased cyanosis, labored breathing, increased sweating, increasing clamminess, seemingly lower oxygen sats, being sick with fevers 3 times from germy brothers, etc.). Miles' heart hasn't changed and surgery is still on. We should get a phone call this week from the surgeon's office to set up an appointment time and possibly the surgery date. YIKES! It is going to be traditional open heart surgery since his heart can't be repaired any other way.
The cardiologist said that we are doing a great job since he gained so much weight. He was 6 lbs 8 oz at birth, so he is getting so close to doubling his weight at 12 weeks. He asked if he was still nursing and we said, "Yes!". He said that breastfeeding was equivalent to running a marathon and that if he was doing such a great job with nursing, then recovery would be "easier" for him. He felt our instinct was better than relying on an oxygen monitor. I waiver on this part, but understand how easy it is to watch a monitor than trust my instincts by my birth doula work. If something seems off, we know our baby best and we need to follow through.
We are looking at an August surgery date instead of September now. We talked about how the boys are in public school and they go back towards the end of August. The cardiologist felt if we went with an early August surgery date, Miles would have a better chance at a few weeks of healing time without being exposed to all the extra germs the boys will be bringing home. Good plan in our eyes. The whole post-op healing process is 6 to 8 weeks. Dale is planning on taking off several weeks to help us keep Miles home as long as possible.
It was a good, good visit. Oh, and I promise the next post will be his birth story.
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