Two years ago today, at this moment, Jeff & I took turns holding our 6 day old baby boy. It was a quiet Monday morning. Around 1 p.m. the anesthesiologist came to wheel Jacob away. We walked with him all the way to the elevator that would take Jacob to the surgical suite. The tears streamed down our faces as they took him away.
Then, we said a prayer. Jeff & I then took the little Duke tram over to another part of the hospital to sort of "get away" and try to eat some lunch. We finally returned to the PICU waiting area and were joined by friends & family.
It was a long 3.5 hours before we got our first update at 4:30 p.m. that the ASO had been completed. The ASO, of course, reverses the pulmonary artery & aorta back to their anatomical position. I've heard that the heart of a newborn baby is about the size of a strawberry. Amazing work, Dr. Jaggers, simply amazing.
About 15 minutes later, they let us know he had come off the bypass and that his heart was pumping & his lungs oxygenating his blood. A while later, they wheeled him by quickly. Nearly an hour after that, perhaps 7 p.m., we finally got to go back & see him. We didn't take any pictures, which is something I sort of regret. At the same time, I can still see the image in my eye. He had tubes and wires everywhere, and a little forehead temperature thing.
I almost consider August 7 to be a kind of "birthday" for Jacob. It's the day his heart was fixed by the talented Dr. Jaggers, so that he could go on to live a long, happy, normal life.
Showing posts with label duke. Show all posts
Showing posts with label duke. Show all posts
Thursday, August 7, 2008
Sunday, February 10, 2008
Happy CHD Awareness Week! - Feb 7-14
The reason I started this blog was in part to chronicle Jacob's adventures, but it was also to raise a awareness about CHD and to share Jacob's journey with CHD. As many of you know, he had a very scary start in this world and we are so lucky that we have him with us today. He has a smile that lights up the room.
Tomorrow, on Valentine's Day, I will spend a good chunk of the day volunteering at the Mix 101.5 Radiothon for Duke Children's Hospital. I hope you will take a moment to make a donation, even if it's just $5! 100% of the money raised goes to programs for kids at Duke Children's: sending a DC kid to a special camp; buying toys; computers; magazines; research & development; etc.
Also, in honor of CHD Awarness Week, I hope you will visit this fabulous Learn About CHD Blog:
(and thanks to Emily's blog for making me aware of it!)
Happy CHD Awareness Week!
Tomorrow, on Valentine's Day, I will spend a good chunk of the day volunteering at the Mix 101.5 Radiothon for Duke Children's Hospital. I hope you will take a moment to make a donation, even if it's just $5! 100% of the money raised goes to programs for kids at Duke Children's: sending a DC kid to a special camp; buying toys; computers; magazines; research & development; etc.
Also, in honor of CHD Awarness Week, I hope you will visit this fabulous Learn About CHD Blog:
(and thanks to Emily's blog for making me aware of it!)
Happy CHD Awareness Week!
Tuesday, April 24, 2007
A visit to Duke Children's Clinic
Today, we took Jacob for his 5th follow up visit since his discharge from Duke on August 16. We see Dr. Delaney, who is Jacob's pediatric cardiologist. Dr. Delaney is also an interventional catheterization specialist - he was there the morning Jacob arrived at Duke and performed Jacob's balloon septostomy along with Dr. Rhodes. Dr. Delaney also sat down with Jeff and I before Jacob's surgery and detailed Jacob's condition and surgery and let us ask questions. He is a good doctor and has a good "bedside manner." Anyway, on to the visit...
After our traditional breakfast at Elmo's, we arrived at Duke at 8:45 a.m. We were taken back for a height & weight check. Jacob's length was 28 inches and his weight was 18 lbs, 7 oz. Then, it was over to the main hospital for the echocardiogram. This was Jacob's third outpatient echo, so Jeff and I thought we had the routine down. We arrived on the 7th floor to find a sign that said something to the effect of wait by the elevators for x, y, z and peds echo. That was odd. The paper we were given at the Children's Hospital said to go to the waiting room at 7416, which is where we usually went. We walked towards the waiting room anyway, and found doors covered in plastic. Something was definitely different. We went back to the elevator area. A nice woman we'd seen on the elevator figured out we were there for a peds echo and offered to tell them we were waiting. A little later, they came out and walked us back to the echo room. The nurse explained that they had a pipe burst in the waiting room and it was being repaired. It's funny because the Children's Hospital receptionists had no idea about this.... Anyway, so we get back to the echo room, and we wait.... and we wait... and we wait. It was 10:00 a.m. before the doctor overseeing the echo labs came in to examine Jacob. He recognized him from his treatment last August and noted how great Jacob looked. This happens to us pretty frequently at Duke. Nurses & doctors that we don't necessarily remember, remember us and remember Jacob. While heart defects are 1 out of 100 babies born, transposition (a.k.a TGA) is seen about 1 in 1000, so Duke sees maybe about a TGA baby a month (a nurse told me this), so they tend to remember those patients.
Anyway, Jacob finally got the sedation medicine, chloral hydrate, about 10:00 a.m. For the next 15 minutes, he went from crying, to babbling and doing raspberries. He was quite funny. We noted he was a funny "drunk." Finally, we went to sleep about 10:20 a.m. and they began the echo. After taking echo pictures for about 25 minutes, the technician went out to discuss everything with the doctor. The nurse came back in about 5 minutes later and said we were all done. We headed back over to the Children's Clinic and were immediately taken back to the exam room since our appointment was 11:00 a.m. with Dr. Delaney.
A little later, another doctor came in. He introduced himself, but all I caught was "Roddy" was his first name. He talked to us about Jacob's last 3 months, and then went to discuss with Dr. Delaney. A little later, Dr. Delaney came in and said that the echo results were "excellant." Everything is flowing along just great. Of course, they are keeping an eye on the pulmonary artery, as well as the arteries (?) to the lungs for stenosis, but so far, so good. They were very pleased that Jacob doesn't even sound like he has a murmur on exam, which would be typical. The best news is we don't have to go back in 3 months! They told us to return in 6 months and Jacob will have another echo at that point. For probably the next 2-3 years, they will want to echo him every 6 months, but in January, he mentioned they would want to see him every 3 months in between echos, so this was good news! Dr. Delaney did mention that Jacob's weight had fallen down a notch on the growth curve, but this is likely due to Jacob crawling and becoming more active. We have Jacob's 9 month check up with his peditrician in a couple of weeks, so I'm sure we can address that then. From what I understand, that isn't all that out of the ordinary.
So, the bottom line is Jacob gets an A+ on his echo and no return for 6 months!!
He slept until 12:30 p.m., had a bottle, a little lunch around 2:00 p.m. and passed out again at 2:30. He's still asleep at 4:45 p.m.! I need to go wake him!
After our traditional breakfast at Elmo's, we arrived at Duke at 8:45 a.m. We were taken back for a height & weight check. Jacob's length was 28 inches and his weight was 18 lbs, 7 oz. Then, it was over to the main hospital for the echocardiogram. This was Jacob's third outpatient echo, so Jeff and I thought we had the routine down. We arrived on the 7th floor to find a sign that said something to the effect of wait by the elevators for x, y, z and peds echo. That was odd. The paper we were given at the Children's Hospital said to go to the waiting room at 7416, which is where we usually went. We walked towards the waiting room anyway, and found doors covered in plastic. Something was definitely different. We went back to the elevator area. A nice woman we'd seen on the elevator figured out we were there for a peds echo and offered to tell them we were waiting. A little later, they came out and walked us back to the echo room. The nurse explained that they had a pipe burst in the waiting room and it was being repaired. It's funny because the Children's Hospital receptionists had no idea about this.... Anyway, so we get back to the echo room, and we wait.... and we wait... and we wait. It was 10:00 a.m. before the doctor overseeing the echo labs came in to examine Jacob. He recognized him from his treatment last August and noted how great Jacob looked. This happens to us pretty frequently at Duke. Nurses & doctors that we don't necessarily remember, remember us and remember Jacob. While heart defects are 1 out of 100 babies born, transposition (a.k.a TGA) is seen about 1 in 1000, so Duke sees maybe about a TGA baby a month (a nurse told me this), so they tend to remember those patients.
Anyway, Jacob finally got the sedation medicine, chloral hydrate, about 10:00 a.m. For the next 15 minutes, he went from crying, to babbling and doing raspberries. He was quite funny. We noted he was a funny "drunk." Finally, we went to sleep about 10:20 a.m. and they began the echo. After taking echo pictures for about 25 minutes, the technician went out to discuss everything with the doctor. The nurse came back in about 5 minutes later and said we were all done. We headed back over to the Children's Clinic and were immediately taken back to the exam room since our appointment was 11:00 a.m. with Dr. Delaney.
A little later, another doctor came in. He introduced himself, but all I caught was "Roddy" was his first name. He talked to us about Jacob's last 3 months, and then went to discuss with Dr. Delaney. A little later, Dr. Delaney came in and said that the echo results were "excellant." Everything is flowing along just great. Of course, they are keeping an eye on the pulmonary artery, as well as the arteries (?) to the lungs for stenosis, but so far, so good. They were very pleased that Jacob doesn't even sound like he has a murmur on exam, which would be typical. The best news is we don't have to go back in 3 months! They told us to return in 6 months and Jacob will have another echo at that point. For probably the next 2-3 years, they will want to echo him every 6 months, but in January, he mentioned they would want to see him every 3 months in between echos, so this was good news! Dr. Delaney did mention that Jacob's weight had fallen down a notch on the growth curve, but this is likely due to Jacob crawling and becoming more active. We have Jacob's 9 month check up with his peditrician in a couple of weeks, so I'm sure we can address that then. From what I understand, that isn't all that out of the ordinary.
So, the bottom line is Jacob gets an A+ on his echo and no return for 6 months!!
He slept until 12:30 p.m., had a bottle, a little lunch around 2:00 p.m. and passed out again at 2:30. He's still asleep at 4:45 p.m.! I need to go wake him!
Monday, April 23, 2007
Good Monday Morning!
Our weekend went pretty well! Jacob slept great! He even let us sleep in until 7:30 a.m. on Sunday! Wow!
Saturday morning, Jacob and I went to March of Dimes' WalkAmerica at Nortel Networks. I ended up raising $230 of my $250 goal. Not bad! Our team raised $3,240 so far, and our goal was $3,000! We walked the 3.1 miles. Jacob was such a good baby! He didn't cry one time. I don't think he was feeling very good on Saturday - he was rather quiet. When we got home, he was running a little fever, but seems to have beat whatever he had. (Keeping fingers crossed!) Since he was running a fever, we skipped the birthday bash across the street and the wine festival. My mom ended up taking herself to the airport. So the rest of Saturday and most of Sunday were pretty quiet.
Last night, Jacob did not want to go to sleep. After 45 minutes of trying to get him to sleep (reading, rocking, back-patting), he still wanted to cry whenever he was in his crib. I finally gave up. We had to let him cry. From 7:45 p until 8:15 p, he cried off & on. For example, he would cry 6-7 minutes, and then stop for 5 minutes, then repeat until about 8:15 p. He did sleep the rest of the night without a peep. This morning, at 6:30 a, he was awake and cheerful.
Tomorrow, please keep Jacob in your thoughts & prayers. He has his appointment at Duke with Dr. Delaney, his pediatric cardiologist. Prior to seeing Dr. Delaney, he will have to be sedated for an echocardiogram. These appointments seem to get more difficult the older he gets, and I think that will continue to be true. I'm praying we continue to get the good news we've had at his last 3 appointments in September, November & January.
I've uploaded March & April pictures to shutterfly. They will be added to the collection really soon! I just need to do some editing!
Saturday morning, Jacob and I went to March of Dimes' WalkAmerica at Nortel Networks. I ended up raising $230 of my $250 goal. Not bad! Our team raised $3,240 so far, and our goal was $3,000! We walked the 3.1 miles. Jacob was such a good baby! He didn't cry one time. I don't think he was feeling very good on Saturday - he was rather quiet. When we got home, he was running a little fever, but seems to have beat whatever he had. (Keeping fingers crossed!) Since he was running a fever, we skipped the birthday bash across the street and the wine festival. My mom ended up taking herself to the airport. So the rest of Saturday and most of Sunday were pretty quiet.
Last night, Jacob did not want to go to sleep. After 45 minutes of trying to get him to sleep (reading, rocking, back-patting), he still wanted to cry whenever he was in his crib. I finally gave up. We had to let him cry. From 7:45 p until 8:15 p, he cried off & on. For example, he would cry 6-7 minutes, and then stop for 5 minutes, then repeat until about 8:15 p. He did sleep the rest of the night without a peep. This morning, at 6:30 a, he was awake and cheerful.
Tomorrow, please keep Jacob in your thoughts & prayers. He has his appointment at Duke with Dr. Delaney, his pediatric cardiologist. Prior to seeing Dr. Delaney, he will have to be sedated for an echocardiogram. These appointments seem to get more difficult the older he gets, and I think that will continue to be true. I'm praying we continue to get the good news we've had at his last 3 appointments in September, November & January.
I've uploaded March & April pictures to shutterfly. They will be added to the collection really soon! I just need to do some editing!
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