April Doc Visits ~
We saw Doc Caldwell today for Rad's 15 month check up. Radcliffe weighed in at 26 lbs 14 ounces, has a head circ. of 51 cm and is 31 1/2 inches tall. That works out to be 75th percentile in weight, 95th to 100th in head circ :) and 60th in height. He was lucky enough to inherit his mom's size-able brain case, lucky him. :) He also got a round a vaccinations... ouch! But Rad was a champ and took it like a man. :) Daddy will be so proud!
Rad's right ear did show a slight infection so we are back on antibiotics for that. I guess this is what people mean when they talk about ear infections that just don't want to go away!
God is god!
Nancy
Announcement ~
It's time for the Congenital
Heart Walk again! We are so excited and determined to make this year
super fun and raise some money for all those "special hearts" out there
while we're at it! Check out Team Radicaliffe for more details on how
you can get involved!
January and February Doc Visits ~
Cardiologist Visit: We went to see Doc Shaffer on 2/7. Radcliffe had a standard EKG and Echo done to determine how his heart is doing. After reviewing the results, Doc Shaffer shared some miraculous news with us. Radcliffe's heart is not only doing radically well... Doc Shaffer said he can't predict that Radcliffe will have to have any further procedures! His hypoplastic (extremely small) valve continues to grow with him which is against all the odds and the predicted stenosis or thickening around the valve is not present. This is simply incredible!!!
Let me provide a little refresher. Our surgeon, Dr. Forbess, made it very clear that the more than likely scenario for a patient like Radcliffe would be the need for another surgical procedure around 1 yr to 18 mo. In order to core out the corrosion (stenois) on his hypoplastic aortic valve. Which as I already stated, his valve is perfectly clear. Furthermore, due to the extremely small size of his valve at birth, (which was almost too small, meaning inoperable and incompatible with life) it needed to grow 5x it's original size by adulthood! Something, that is almost unheard of and certainly not likely. Radcliffe's valve has grown 3x it's original size thus far and is continuing to grow with him! What an amazing blessing!
If Radcliffe' aortic valve continues to grow with him and remains clear of corrosion, as Doc Shaffer predicts it will, he will not only avoid having open heart surgery at 12-18 months old but he will also avoid having a valve replacement during childhood or young adulthood! Praise Jesus! He will still have to have a valve replacement around 40 or 50 because of his aortic valve being bicuspid instead of tricuspid. However, they are already doing valve replacement in adults through the groin instead cracking their chests open. Piece of cake. ;)
I can't help but feel overwhelmed with gratitude and humility when I think of what God has done for us in through Radcliffe's heart. We could be headed back to Children's Hospital any day now so he could undergo another open heart surgery... I shutter at the thought. Our God has given us nothing short of a miracle. Praise His Holy Name.
God is so amazingly good!!!
Nancy :)
Pediatrician Visit ~
We saw Doc Caldwell in January so Rad could get his 1 year old check up! He's 25 1/2 lbs and feeling frisky! Rad did get his first cold and ear infection a few weeks ago, no fun! He took some antibiotics for a week and he's all better now! Thanks Doc Caldwell :)
God is good !
Nancy
Late October Visit ~
The Nephrologist visit went really great!!! Dr. Simon
did some minor testing and evaluated Rad as well as took his blood
pressure again. Dr. Simon was happy with Rad's blood pressures so after waiting a few days and testing them again, he
decided to take Rad off his Enalapril (blood pressure medicine). Dr. Simon didn't feel it was necessary to run further tests at this time on Rad's kidneys.
We will follow up with Dr. Shaffer, our cardiologist, to continue to monitor Rad's blood pressure. But for now... no meds!!! Yea! What an answer to prayer!
God is good!
Nancy
October Dr. Visits ~
Cardiologists Visit:
We went to see Dr. Shaffer on Tuesday, October 11th. Rad had an EKG done as well as an Echo (heart imaging). Dr. Shaffer said the everything with Rad's heart is looking great! He also said that Rad's heart is growing proportionately to his body! In addition, there are no signs of thickening around the aortic valve or narrowing in the arch at the site of repair!!! HUGE answers to prayer! Praise Jesus! Just to be sure, I asked Dr. Shaffer if we were in any way on a course that would result in some of the things Dr. Forbess, the cardio surgeon, has warned us about? ( i.e. coring out the aortic valve due to scar tissue build up, stinting the arch due to narrowing, problems with valve growth or function, etc. ) He assured me were good on all fronts and that Rad's heart was working perfectly:)!!! Oh and he weighed 21 lbs 13 oz!
However, His blood pressure is still elevated so Dr. Shaffer wants us to go see a Nephrologist. I had never heard of such a thing, obvi :) I was like, a Nefrawho?:) Apparently, a Nephrologist is to a Urologists as a Cardiac Surgeon is to a Cardiologist. Or in plain terms, an internal med doctor that specializes in the function and disease of the kidneys. Anyways... we are going to see one next week so he can help Dr. Shaffer determine the cause of Rad's high blood pressure. Dr. Shaffer explained to me that the kidneys are in charge, more or less, of determining blood pressure. In Rad's case, they can either A: not be receiving enough blood from heart so they send out chemicals to raise blood pressure in order to keep up with the body's demand or B: the heart is supplying plenty of blood to the kidneys but somewhere along the lines the wires get crossed and the kidneys believe it is blood deprived. Rendering the same result as A. We know that Rad's heart is sending plenty of blood to the kidneys sense it is functioning "normally". So, it leads Dr. Shaffer to believe that perhaps being on the bypass machine caused some wires to get crossed or some scarring developed from Rad's reflux. Therefore, we are off to the kidney expert! The Nephrologist will also determine Rad's dosage of Enalapril (his blood pressure med) at that time and decide whether to increase the dose or change his medications all together.
God is Good!
Nancy
Urologist Surgery Follow Up:
We saw the nurse practitioner for Dr. Shaffer last Friday , October 7th, for Rad's circumcision follow up. Everything looks great and he is heeling nicely. We are scheduled to go back in 4 months so they can do some imaging in order to check on Rad's kidneys and bladder. They are not putting him on any meds at this time for his grade 2 reflux. He will have another VCUG done around a year from now to determine if his reflux is still present and if we need to start a more aggressive treatment at that time. As I posted before, they do expect him to grow out of the reflux by age two or so. That is very common. As for now, we just live life and pray that he doesn't get anymore UTI' which would mean medication as well as more procedures. FYI, the reason they don't want a child to continue to get UTI's is because it can result in scaring on the kidneys as well as other problems.
Pediatrician Visits:
We went to see Dr. Caldwell at the end of September for our 9 month old check up and vaccinations. Ouch! Rad weighed 20 lbs. 8 oz. JR actually took him to this appointment so I will have to post his measurements later because he has the print out. But Dr. Caldwell said he is growing perfectly and quite a handsome little guy to boot! Rad is pretty much his favorite;)
Circumcision Update ~
Sorry it has taken me a little longer to post an update than I expected. Radcliffe's surgery went great! Praise Jesus:) They took him back into the surgery around 3:30 pm and they finished up about 5 pm. Dr. Seremetis, the Urologist, is keeping him on pain meds until Sunday at which time Rad should be feeling well enough to no longer need them. The stitches should dissolve within 4 to 6 weeks. In addition to the circumcision. they also performed a VCUG which I had mentioned in my previous post. The results showed that Rad does have some mild reflux when urinating. Due to the reflux being mild, Dr. Seremetis anticipates that Rad will grow out of his reflux by age two or so and does not need to be on any medication at this time. We will be following up with Dr. Seremetis in 4 to 6 weeks to check on things down there;) So all in all things were successful and Rad is currently sleeping soundly in his bed once again. What an angel:) I will post pics of today's events tomorrow as I am tired and plan on watching a movie with JR and Aunt Watawie:)
God is Good!
Nancy
Circumcision Sept 2 ~
Tomorrow Radcliffe has his circumcision which is scheduled for 3pm. The surgery will take place at Dell Children's Hospital here in Austin. Dr. Seremetis, Rad's Pediatric Urologist, will perform the surgery. It is supposed to be a standard procedure with minimal risk but any surgery is scary, especially when it involves your child:) Plus, as I mentioned before, he has to be put under general anesthesia so that is unsettling in and of itself. We have full faith that our Heavenly Father is watching over Radcliffe as he sleeps tonight, just as he will be tomorrow. We pray His will be done. We also know that all of you will be praying with us. Which brings us great comfort and strength.
Poor little Radcliffe is asleep in his bed right now having no idea what is about to happen to him in a few short hours:(
In addition to prayer for the actual surgery, we also ask for your prayer over Rad's. tummy! We have to withhold food past 5:30 am and milk past 9:30 am... so pray Radcliffe doesn't get too grumpy:(
I will update the blog when Rad is out of surgery and in recovery to let everyone know how things went. Thank you so much for all of your continued prayer and support! We are forever grateful!
God is good!
Nancy
June Doctor Visits ~
Renal Ultrasound Results 6/28/11: The results for the RU came back completely normal! Yea! Thank you Jesus:)
On that note... I must share some things that Rad and I saw this week while seeing different doctors. First, we saw a beautiful baby boy, about Rad's age, at our Cardiologist's office. He had a breathing tube in his neck. His father and his nurse had to be very diligent in keeping it cleaned out so that the airway would remain clear. You could literally hear the sound of every labored breath he took. Clearly, something as simple as breathing isn't so simple for that little guy. Still, he would smile at Rad following his father's lead. Our prayers and thoughts are with that family and their precious angel. We would ask that your would join us in lifting them up.
The other thing we saw was a young boy, probably around 12, at the Radiologist's office. He had some learning disabilities as well as what appeared to be some mental and verbal challenges. He was clearly disobeying his mother and I believe he was aware of this because every now and again he would yell in very LOUD bursts. So loud, Radcliffe would jerk! Once again I was reminded to pray for the other families out there that are dealing with so much on a daily basis.I pray that God will provide them with patience, comfort and true joy.
I do not know what it would be like to care for a child with such mental or physical needs as the two boys we saw this past week. All I know is that I was reminded once again of how good our God is and how blessed we are to have Radcliffe in great health. As I looked at my little boy in comparison to them, even though I know the scars he bares, I couldn't help but think of how normal and healthy he seemed. I was overwhelmed with thankfulness to my God. JR and I do not deserve a healthy child anymore than those families do but God in his infinite mercy blessed us with one all the same. Of course, I know that reality can and likely will change one day. That we could find ourselves back in the hospital, praying for a miracle. But that knowledge does not keep me from living in today and being thankful for these past 6 months of health. What a Rad-icaliffe God has given us... let's live it!!!
God is Good:)
Nancy
6 Month Check Up... Pediatrician Visit 6/28/11: Rad had his 6 month check up today with Dr. Caldwell. That's where we found out the results of Rad's Renal Ultrasound taken yesterday at Dell Children's. Rad got a few immunization shots... ouch:( But thankfully they don't hurt near as bad as some of the other shots he's gotten! That made mommy and Rad happy:)
Rad's Specs:)
Height: 27' 1/2'' (85-90th%)
Weight: 18 lbs 3 1/4 oz ((70th%)
Head Circ: 46 cm (90-95th%)
What a big boy!
God is Good!
Nancy
Pediatrician Visit 6/24/11: We went to see Dr. Caldwell again Tuesday, June 21st. Radcliffe weighed 18 pounds, 2 ounces. What a chunk:) Dr. Caldwell took another urine sample and it came back clear. Yea! He also explained to us that he wanted Rad to get some more tests done in order to eliminate any other possible causes for Rad's UTI. Apparently, babies with heart defects have an elevated risks of kidney and urinary outflow problems. Due to the fact that the heart and the kidneys develop at the same time. That's not to say that Rad has any issues with his kidneys or urine outflow, it just means they want to be sure it was the lack of circumcision that caused his UTI and not some other unknown issue.
As of now, we are scheduled to have a Renal Ultrasound and a Voiding Cystourethogram (VCUG) on Monday at 2pm. The Renal Ultrasound is imaging that will provide the doctors with pictures of Rad's kidneys to insure that his anatomy is normal in that area. The VCUG is a procedure done by shooting a water-soluble contrast material through a catheter up the urethra into the bladder. Then, urination is monitored using the material injected and x-rays. The VCUG will determine whether Rad's urine outflow through the urethra is normal or if it has some reflux. A reflux of urine back into the urethra is a known cause of UTIs which is why they want to check for it.
Cardiologist Visit 6/26/11: We went to see Dr. Shaffer today. Rad weighed 18 pounds, 4.2 ounces and is 27.5 inches tall:) He had an Echo and an EKG. His Echo looked superb! Dr. Shaffer was very pleased and even described it as "remarkable"! Rad's hypo-plastic aortic valve is functioning quite well and is wide open! It is not showing any signs of build up... which is something we have been watching for. His aortic outflow (oxygenated blood outflow form the heart to the body) looks awesome as well and there is no narrowing in the aortic arch at the site of the repair. Things look very good! We are so thankful!!! Rad's blood pressures are still slightly elevated so Dr. Shaffer increased his medication (Enalapril) a bit. He said not to worry about it that he expected Rad to grow into his blood pressures. Whatever that means, right?;)
I also talked to Dr. Shaffer about the tests Dr. Caldwell recommended that Rad get regarding his recent UTI and he agreed that he should get them. He also explained the association of heart defects with kidney issues to me a little more and helped me understand why the VCUG might be a good idea.
Dr. Caldwell has been in touch with the Urologists, Dr. Seremetis, to be sure that he also thinks the tests are necessary. Pending a few questions I have into Dr. Seremetis, we will proceed with both tests on Monday. Please keep Rad in your prayers. Our prayer is that the results are positive and normal. Not to mention that the VCUG will most certainly not feel very nice. Which makes us very sad:( We hate to put him through anything unnecessarily which is why we also ask for your prayers over our ability to make the right decisions for our little boy. Sometimes the weight of it all seems overwhelming but we know our God is ever faithful to sustain us.
God is good!
Nancy
Extra Doctor Visits ~
Well, Radcliffe has had quite the week! We spent most of this past week at our Pediatricians office and at the lab getting all kinds of tests run. It all started last weekend when JR kept saying he felt like Rad wasn't himself. Then, Monday morning rolled around and Rad wouldn't eat, he was spitting up a lot and I noticed he seemed warm. His temp was a 101.5 to be exact! So off to the doctor we went!
Once we got to the doctor's office, Dr. Caldwell checked Rad out and found that he had a Urinary Tract Infection. Which is something uncircumcised boys are prone to:( Dr. Caldwell said that the UTI could certainly explain his symptoms but he wanted to be sure that we weren't missing anything with his heart or lungs... especially since Rad's respiratory rate was elevated.
So, we headed over to the lab at the hospital across the street to get some blood work done. It was so sad because they had to stick him in his arm! Usually they just prick his toe if they need a little blood for labs but not this time. The arm is much worse because babies are super chunky which makes it very difficult to find a vein. So they had to dig for one:( Ouch! Poor Rad:( After that, we headed over to the imaging center so they could get an x-ray of Rad's chest. That wasn't nearly as bad. But he did have to get into this tube like x-ray machine that was so sad and funny at the same time! Apparently, it enables them to get really awesome shots of little guy's chest since they like to wiggle so much:)
Here is a pic because words just don't do it justice;)
Thankfully, all ended well after three days of going back to the doctor for more tests. The x-rays and other tests came back normal. It turns out the only thing Dr Caldwell found was the UTI so we were relieved! Rad is on antibiotics now, fever free and feeling a lot better:) We are certainly looking forward to Rad's circumcision in the fall so we don't have to worry about UTIs anymore!
Although it was exhausting, we are very thankful to Dr. Caldwell for being so thorough... he's a great doctor!
God is good:)
Nancy
May Doctor Visits ~
We went to see a Urologists on May 18th, named Dr. Seremetis, to see about getting Rad's cricumsized since he coulnd't get it done as a new born. Rad's snip snip;) surgery is set for September 2nd... enjoy the sunner Rad!:) BTW... Rad weighed about 17 lbs at that appointment.
We see Dr. Caldwell (Ped) again in June and Dr. Shaffer (Cardio) on June 27th.
April Doctor Visits ~
We saw Dr. Caldwell and got some more shots... ouch!!! Rad weighed 15lbs 4oz:)
*We won't be seeing Dr. Caldwell until the end of the month and our next apppointment with Dr. Shaffer isn't until June. We will be seeing a Urologists in a few weeks to see about getting Rad circumsized since his heart surgery prevented him from getting that done right after birth.
So look for updates on that soon... I'm sure it's going to be a real blast;) yikes!
God is good!
Nancy
March Doctor Visits ~
Pediatrician Visit: We went to see Dr. Caldwell again on Tuesday the 29th for a quick check up. Radcliffe weighed 13 lbs 10 1/2 oz and he is looking very healthy! Dr. Caldwell said we are released from hibernation! Yea!:) We can't wait to get out there and mingle!
*To view Rad at his Peds Doc's visit live see Radisodes.
Cardiologist Visit: We went to see Dr. Shaffer yesterday and we have some great news! After reviewing Rad's echo and listening to his heart yesterday, it seems like the hole between Radcliffe's left and right ventricles (the VSD) has completely closed!!! When the surgeon, Dr. Forbess, made the repair back in January... he said the remaining portion of the hole should close on it's own over time and it has! Praise Jesus!!! We are so excited:) Dr. Shaffer also said that Rad's heart looks very healthy and flow is good.
His blood pressure is still a little higher than normal so Dr. Shaffer put Rad on some medicine to help with that called Enalapril. He said we would monitor his pressures and see if he grows out of the medicine. The heart is still trying to adjust to it's post-op structure as well as the the new blood the body is now producing because babies start to produce their on blood around this age. Dr. Shaffer said we are using the medicine for preventative purposes and that their are virtually no side affects.
Pediatrician Visit: We saw Dr. Caldwell on the 8th. Radcliffe has grown so much! He weighed 12lbs 9oz, his height was 24 1/2 inches and his head circumference was 42cm!!! He jumped from the 12th percentile to the 75th in weight, 60th percentile to the 90th in height and the 50th percentile to 70th in head circumference. Dr. Caldwell was amazed!
He couldn't believe he had grown so much and jumped divisions like that. He said that typically you see babies grow along a particular division (percentile) throughout childhood maybe jumping around here and there a bit but not from the 12th to 60th and so on!!! He told us to rejoice, that this was amazing... especially for a heart baby:)! We are certainly rejoicing! Thank you Jesus for blessing Rad with incredible growth:)
Rad also got his immunizations! He hadn't been previously cleared to get them but now we can! Rad wasn't as excited as mommy:) Rad did test low on his hematocrit (red blood cell / iron level). Which isn't so great. Although, it is common for newborns levels to drop in the first few months of life. But, Dr. Caldwell doesn't want Rad's to drop because of his heart. So we have been taking vitamins!
So, in order to get Rad's levels tested again... we went to see Dr. Caldwell yesterday too and Rad was back in the normal range, yea! We also got our 2nd Hep B shot, ouch:( Rad now weighs 12lbs 13oz:)
We went to get our 2nd dose of Synergists yesterday as well. It really hurt! Poor Rad:( He screams his little pants off!
Well, that's it for Doc visits until we see the Cardiologists on the 24th!
God is good!
Nancy
February Doctor Visits ~
Pediatrician Visits: We went to see Dr. Caldwell twice in February and everything looked great! Radcliffe is gaining weight like a champ and fillin' out in all the right places. At our last visit on February 11th, Rad weighed 9 lbs 7 oz!! He's a big boy now:)
Synergists Appointment: We went to get our Synergists shot on February 15th from the Austin Chest Specialists. Synergists is medicine given to high risk patients to protect against RSV. Rad said, "that shot really hurt mom"! The medicine is thick and it made Rad a tad cranky for a few days:) He weighed 10 lbs 13 oz then... he's a biggin!
God is good!
Nancy
January 27 - February 1, 2011 ~ Doc Visits
Pediatrician Visit, Jan 27th: Radcliffe's visit with Dr. Caldwell went really well! Rad weighed in at 8lbs. 4oz. He also got his approval for his Synergists shot so we will be getting that shot really soon. We are still hibernating and having fun spending quality time together as a family:)
Cardiologists Visit, Feb 1st: Radcliffe's visit with Dr. Shaffer went really good too! He had another Echo and an EKG done. Rad was so good during the tests that the doc asked me if he was always this happy:) What an angel! The doc said things look great so we don't have to come back until the end of March:) Yea! Rad weighed 8lbs 13oz and is almost 23 inches now!!! Good job hungry:)
BTW: I don't think I ever put a full description of Radcliffe's heart condition on here since his surgery. Obviously, the details of his heart were very clear once they got in there and saw it first hand. So I made another link, Radnatomy, for those who want to know all the funky details of Rad's anatomy:)
God is Good!!
Nancy
January 12 - 21, 2011 ~ Dr. Visits
Here are some updates on what Radcliffe has been doing since he got home...
This is Rad at his first follow up visit with the Cardiologists!
"This outfit is from my Auntie Micah... I wove it:)"
He was very nice! Rad had another Echo and the Doc
said his heart is lookin' good. His pulmonary valve is barely leaking
at all anymore!!! The left ventricle is still looking a little thick so
we might get on some medicine for that later if it doesn't start to
improve on it's own. Other than that, we are just watching for
growth in his aortic valve! We go back to see Dr. Shaffer on February 1st.
- - - - -
Here's Rad on his way to his Pediatrician's office!
"I wove my Mico Cozy Car Seat!!!"
Radcliffe's pediatrician is Dr.
Caldwell. He's super nice and really funny. He gave us strict orders to
hibernate through the flu season so Radcliffe doesn't get sick! Rad has to get some special shots called Synergists to keep him extra
protected from germs. Dr. Caldwell also told us to take Vitamin D and
Iron... the stuff taste nasty:( We have been to see Dr. Caldwell twice
since we got home and will go back next Thursday, the 27th. Then we only
have to go every month for a while.
God is good!
Nancy
January 12, 2011 ~
One day short of John Radcliffe's birthday... we find ourselves back in our home. Words can not express how good it feels to be back in Austin and have our little Rad with us. He is sleeping soundly and doing very well. We have our first appointment with our new Pediatrician tomorrow at 10:30.
God is good:)
Rad's ride home... tube and wire free!
God is good:)
Nancy
January 11, 2011 ~
"My very first stuffed animal... Mr. Highland Cattle"!
A lot has happened the past couple of days. Auntie Missa, who is a Speech Pathologists, helped Radcliffe learn a really good latch and suck on the bottle so he fed the first night like a champ! Aunt Missa helped him go from 10cc to 50cc in one night! The doctors were impressed! Thanks Auntie Missa:) We never could have done it without you!!!
Besides reaching his goal of 50cc... the doctors were also watching to make sure Rad's stomach was breaking down food properly. They were also making sure liquid didn't lay on his vocal folds and leak into his lungs causing fluid build up or even pneumonia. Two things that are not uncommon to see in a baby following heart surgery. Especially, one that has never eaten before. No problem for Rad! He surpassed everyones' expectations and is now known as the "Model Patient" around the ICU!
Because Radcliffe did so well with his last hurdle, feeding... we got discharged from the Cardiac ICU yesterday afternoon and moved to the 8th floor!!! (the floor you go to before you go home:) Even more shocking... we are going home tomorrow!!! God has continued to bless us and we are getting out of here earlier than anyone expected, even the doctors:) We are so very thankful for what God has done through our little boy and the way He has been with him every step of the way... helping our little guy overcome incredible hurdles. It's quite remarkable to watch as Rad continues to improve and become what seems to be a healthy little boy.
Rad will most likely have other procedures done and possibly other surgeries in his life. But today, we are thankful for what God has done to heal our son and we hope the scar across Rad's heart will remind us forevermore of the scars that Jesus bore for us.
God is good:)
Nancy
January 8, 2011 ~
So much has happened in these last two days! It has been thrilling!!! Radcliffe was extubated and is no longer on the vent. He has been taken off all medications except the ones that are currently feeding him. But they aren't going to be hooked up for long... because today we get to eat real food for the first time!!! Yea:) I have been pumping away so Rad has about 2 gallons of milk ready for him to munch on:) We are very excited about eating... Rad said, "Give me my Queso Drip STAT"!
Since he has done so well, everything now hinges upon eating. How he eats will determine how long our stay here is so pray that eating goes well! It's so amazing how quickly God's little ones heal. It's hard to imagine that he had surgery on Wednesday and we are already talking about feeding him today. He has a little oxygen in his nose right now just to help with the transition from the vent but they turned it off this morning because he doesn't need it:) God is so good:)
Here is a pic of Rad, Auntie Watawi and me before they took Rad off the vent.
Here is another pic of Rad on before the vent came out... so sad:(
This is what he looks like today... all swaddles and cozy. Suckin' on dat passy:)
Many families are not as blessed as we have been and our hearts go out to them. We have met several families here who are facing what seems like the impossible. One little girl named Emma and her family have been here for 3 months. They are now awaiting a heart transplant because their little one couldn't come off the vent after her first surgery. Please keep them in your prayers. Emma's mom Sara and dad Scott are so positive and upbeat, it is inspiring.
I have some other friends in Oklahoma who lost their little one, Cohen, last June. He had multiple surgeries/procedures here at Children's but he went home to Jesus when he was only 12 days old. If you would like to read about his story, you can visit http://www.inthiswonderfullife.com/ . Please keep them in your prayers as well.
Sometime it is so hard for us to understand God's infinite plan or why he allows such awful things to happen to precious little children. But we take solace in knowing that the God we serve has and always be a good God. Faithful to sustain us and bring us comfort. He is faithful to answer our prayers in specific ways. He loves our children more than we do, which is difficult to imagine and he loves us in the same way.
God is good:)
Nancy
January 6, 2011~
Radcliffe had a really big day today and God blessed us continually throughout it. Early this morning they closed his chest back up and he looks great. He was taken off the pacemaker and his little heart is keeping a strong steady pace all on it's own:) His blood pressure is right where they want it and all his labs look excellent. He is also peeing like a champ:)The nurses and doctors are all very happy with his progress.
We got the biggest blessing this evening when they took him off of the paralytic and he started to wake up! When JR and I first spoke to him, he had his eyes closed and he struggled to open them then looked right at us. He started flinching then moving his arms some. So incredible and resilient.
Tomorrow they will extubate him so pray that goes as well as everything else and he is able to breathe adequately on his own. He is already breathing in between the breathing machine's breat hes so that is a very good sign.
God has taken care of Radcliffe and us every step of the way. There were so many other providential and encouraging things that happened today but I will have to write about them later because I am really tired:)
God is good!
Nancy
January 5, 2011/ 9:25pm~
Just thought I would share a few pics of Rad post-op...
God is good:)
January 5, 2010 / 2:30pm ~
Radcliffe is out of surgery and doing great! They just wheeled him back to recovery and we got to see him briefly in the hall way. He looked really good considering everything he's been through. His little toes were even pink:) JR and I will be able to go back to his room in around an hour and a half to be with him.
Dr. Forbess said that the aortic valve is looking good and the pulmonary valve is only leaking mildly now. There is still a small hole left at the site of the VSD but it will close on it's own.
God answered so many of our prayers again today. We are completely overwhelmed and humbled by how personal of an almighty God we serve. He not only answers prayers but he answers them specifically and in His perfect timing. He gives peace in times of great turmoil and he is the great healer. He healed our little Radcliffe today through the doctors hands that he created. What an awesome God we serve to give mere humans such amazing gifts so that they can repair a tiny heart in a matter of hours. Wow:)!
Please continue to pray that recovery goes well and that he is able to come off the ventilator without complications. He will also have a temporary pacemaker to help regulate the heart at first. They plan on closing his little chest in the morning. With big surgeries like his the heart tends to swell and that can't close until swelling subsides enough.
God is good:)
Nancy
January 5, 2011~
They took Radcliffe back this morning around 7:45. It was very difficult to say the least to watch our little boy being wheeled back to surgery. He such a little guy and he is facing such big things today. He was alert for the last 20 minutes we were holding him before they took him back and was staring straight into JR and I's eyes. What a blessing from Jesus that was to behold:)
The surgery is expected to be 6 to 7 hours. We just received a call from the operating room that he is on bypass and they are operating now without any problems thus far. That was at 9:45. Thank you for the continued prayer, love and concern for Radcliffe, JR and I... we are forever grateful to all of you who follow our story.
We told Radcliffe before surgery that angels would be with him and so would our Heavenly Father. We told him how much better it was to have Him and His angels with him then mom and dad:) God is good!
January 4, 2011 ~
Radcliffe's heart surgery is scheduled for tomorrow morning at 7:00 am. We need your prayers now more than ever. Please pray specifically for his aortic valve to function adequately when they take him of bypass. Also, for angels to guard his heart and to surround him during surgery. He is our little boy and we love him so very much! God is good:)
January 4, 2011 ~
We were able to meet Dr. Forbess yesterday evening briefly. He had just finished reading Radcliffe's echo for an hour. He told us that Radcliffe's anatomy is difficult and not what he had expected to see but that he feels good about our options. He told us definitively that it is an IAA Type A and that his pulmonary valve does leak considerably and is about 3x the normal size. However, he anticipates his pulmonary valve not being an issue once his VSD and IAA are repaired alleviating it of the high pressure it's been under. Since the right side of the heart is a low pressure system the higher volume of pressure it has been under due to the VSD has caused his valve to grow to a much larger size than normal and resulted in excess leakiness.
He also confirmed that his aortic valve is hypo-plastic but said it looked livable. Meaning that it would most likely have to be replaced at some point and maintenance would have to be performed on it from time to time until a replacement could be done. He said that his aortic valve would grow with the increased blood flow following surgery from his VSD repair but the question is how much. Right now his aortic valve is about 4 mm and a normal aortic valve is 9 mm. So it needs to grow considerably to be normal enough to not need a replacement down the line. It is possible for his valve to grow that much because blood flow encourages growth and the VSD repair will put the pressure back where it should be... on the left side. It's just not necessarily probable that it will grow as much as it would need to in order to avoid needing a replacement valve down the road.
Dr. Forbess also informed us of our surgical options and what option he was leaning toward. There are several different routes to take but he is favoring a straight forward IAA and VSD repair. Then, waiting to see how the aortic valve does/grows over time. So this morning during surgical rounds, Dr. Forbess and his team informed us that his surgery would be tomorrow but they just don't know when. He is anxious to get started on it given the uniqueness of his anatomy. So pray that God will be with all the doctors tomorrow as they operate on our precious Radcliffe. We will know more details about surgery times and everything later this evening so I will post that then. Prognosis for this surgery is very good and the mortality rate is very low. The expected recovery time is anywhere from 2 1/2 to 4 1/2 weeks depending on the patient.
God answered so many of our prayers through Dr. Forbess' words. We were praying for surgical options given his unique anatomy and that the aortic valve would be usable. He answered those prayers and showed us what a personal God He is. We know He has a special plan for Radcliffe and we are thankful for His mercy and grace. God is good:)
January 2, 2011~
Sorry it has been a bit since my last post. Things have been a little crazy around here! Radcliffe made it to Dallas on Saturday around noon with no problems. He is all settled into his new room in the Cardio Intensive Care Unit at Children's Hospital.
Shortly after his arrival another echo was done and a few more complications presented themselves. Mainly dealing with the size of his aortic vaulve and the size/function of his pulmonary valve. His aortic valve appears to be hypo-plastic (small) which could very likely mean that it is not capable of being made to function normally. It could also mean that it would need to be replaced at some point. His pulmonary valve is larger than normal and it's functionality could potentially be problematic.
The Cardio Team here also thinks that the Aortic Arch has an Interruption and not a Coarctation. They were leaning toward IAA Type B yesterday but after two more echos this morning it is looking like Type A again. The type really doesn't matter (association with DiGeorge being higher in Type B) for surgery it's just something they would like to pin point now. Radcliffe's labs were sent out on Friday for genetic testing but we won't know the results until later this week. He still shows no sign of any disorder but testing is standard in his case after birth.
We expect to hear more from the cardiology team about the echos they did this morning possibly this afternoon or this evening. Dr. Forbess (the Cardio Thorasic Surgeon here at Children's) returned from vacation this morning. He will be consulting with the cardio team on the echos at some point then we will get his take/plan on our surgical options.
We will know more about when surgery will be and what the current prognosis is after we meet with the cardio team and Dr. Forbess. Please pray that the aortic valve looks use able on his most recent echos. Also we ask for specific prayer over Dr. Forbess that he would be able to come up with an incredible plan for our Radcliffe and that God would supernaturally intercede during the actual surgery. God is good!
Deep thoughts by John Radcliffe... "I tink I wike my new cozy bed at Children's Hospital 'cause they swaddle me:)"
January 1, 2011 ~
John Radcliffe is on his way to the Children's Hospital in Dallas with his daddy. He is all settled in his mobile NICU and ready for take off! More updates to come as soon as we know more. God is good:)
Here is a pic...
Friday December 31, 2010 ~
John Radcliffe is doing great! He came out crying and all pink. After a few minutes of JR and I getting to hold him immediately following birth, which we were so thankful for, he was rushed off to the NICU. An echo was performed shortly there after and the Cardiologists assessed his situation. A few hours later we sat down with the Cardiologists and he explained to us that Radcliffe does indeed have a large Ventricular Septal Defect (VSD) and what appears to be Coarctation of the Aorta (CoA). If it is CoA, it is complicated because it functions very much like an Interrupted Aortic Arch (Type A) because the Coarctation is so severe / narrow. The VSD is also complicated because of the place along the Ventricular Septate in which it is located. They also have some concern over his current Pulmonary Function due to the high pressure it has been under. It is currently draining back more blood than they would like. Somthing that surgery should alleviate but makes things more complicated until then.
Because of these added complexities we are headed to Dallas tomorrow to the Children's Hospital there where Radcliffe will undergo surgery most likely on Monday. Dr. Forbess and his team are scheduled to perform the surgery. Radcliffe will be flown to Dallas in the morning and JR will be riding with him. Once he arrives in Dallas, another echo will be done and arrangements / final plans for surgery will be made.
He is currently in the NICU at Seton here in Austin. He is doing wonderfully and is only on a low dose of Prostaglandin. He is breathing on his own but is unable to eat on his own at this time so he is being fed intravenously. It's all good though because he is super pink, his vitals and labs are excellent and he is alert. JR and I have both gotten to hold him, wires and all, a few times and it's heaven:) Of course, we didn't want to have to go to Dallas but God has a plan and reason for everything so we are trusting His perfect will. We don't know how long we will be staying in Dallas. Could be a few weeks or a month... we just don't know. Please continue to pray and I will try to update the blog as much as possible. So many of our prayers were already answered during these past 36 hours. Just to name a few... my labor and delivery were text book and quick, Radcliffe came out crying and pink, we got to hold our son more than once, he hasn't had to be put on a breathing machine yet, he is stable and strong. God id good:)
Monday December 13th, 2010 ~
We had a wonderful tour of the Dell Children's NICU today given to us by a very sweet lady named Gwen. The facility is so nice and the staff seems lovely. Everyone was very friendly and introduced themselves to us as we went along our tour. So we got to meet several nurses and a couple doctors as well as see some of BC's future friends:)
But the best part about the NICU at Dell is the private rooms! It is not like a typical NICU where the area the babies are kept in is completely open and a common space. Every baby has their very own room... nice and private. We were so excited to see this! Of course we weren't expecting it but it makes everything seem so much better even easier when you can have your own space.
Another nice thing is that the staff never makes the parents leave. Although they recommend you go home as needed to rest:) This was a relief as well. God saw fit to bless us withe so many nice surprises on our trip to the NICU. We are so thankful!
Later the same day...
We met with Dr. Fox, the Peds Cadio Thorasic Surgeon for Dell. He was lovely. He spent an entire our with us going over every possible scenario and outcome for our baby. In our minds. the most important thing Dr. Fox pointed out to JR and I is how crucial it is that BC's heart have usable parts with the capability of being made normal. Most likely the problem would occur in the size of his aortic intake valve, aortic arch or left ventricle. If they are too small to be used, it presents other problems and complicates the situation greatly. So we ask for prayer over this particularly.
If BC's heart has fully useable parts that are capable of being made to function normally then things are considerably more straight forward. He would most likely need just the one operation if that is the case. Which can be done here in Austin.
Most likely, BC will undergo a straight forward surgery for COA or IAA with a repair to the VSD. This is what Dr. Fox is anticipating but once again he can't be sure until an echo is done post birth. The surgery will have to be a heart and lung bypass due to the combination of the COA/IAA and size-able VSD. Prior to about 20 years ago, blood flow was clamped off too the brain entirely while the patient was on bypass and kept in an in-animated, cooled state. They are now able to still cool down the patient's body during surgery while allowing some blood flow to the brain. Studies show that this new way of doing things gives the patient a slight advantage over the already low odds of brain damage. So, if the baby is big enough (over 6lbs or so), the preference is to do the surgery with some blood flow. Since BC is already a pretty big boy:) This shouldn't be a problem for us! Praise Jesus!
Dr. Fox went over the risks of heart surgery on an infant with us as well. Although, the odds are low for major complications or permanent damage to nerves/organs etc.... they are possible. There are also a variety of things that come with the territory for this type of surgery and are to be expected. Such as, poor eating habits initially, loss of one or both vocal cords temporarily (rarely, one is damaged permanently), a temporary pacemaker may be needed to regulate the heart beat post surgery (occasionally one is needed permanently, depending on the presence of nerve damage following surgery), swelling of the heart (which makes it neccessary to leave the chest open with a small patch until swelling subsides), poor liver and kidney function post surgery, etc. Sounds really scary but the most likely outcome is that these things happen and then get better on their own in a relatively short amount of time. So that is also our prayer.
Dr. Fox was patient and very thorough. We felt very good about him upon leaving the meeting and felt a peace from God about his knowledge and capabilities.We praise God for the many blessings he gave us during our visit with Dr. Fox and feel very blessed to have met him.
Until we all meet BC... Merry Christmas and Happy New Years! (hopefully, BC stays in the cooker 'til then:) God is Good!
Tuesday November 30th, 2010 ~
We had our last specialist appointment today and it went very well! BC weighs 6lbs. 1 oz! Not only is BC growing right on target but God gave us the extra bonus of him being ahead of the game in the chubby department! God is good and we are grateful! What a wonderful Thanksgiving blessing! Dr. Harstad said that his fluid, breathing and growth look great! Now we are just waiting to meet our little guy in person. We can't wait!
Reminder: More updates to come on our tour of the NICU at Dell and our meeting with the Peds Cardio Surgeon, Dr. Fox on December 13th. All updates on BC's surgrey after birth can be found here as well. Hopefully we will be able to keep this as up to date as possible during that time:)
Thursday October 28th, 2010 ~
Today JR and I had our care conference at Seton Medical Hospital where our little one will be born in just a couple months! Dr. Finnigan (Peds Cardiologists) was there as well as a Neonatologists, our OBGYN (Dr. Kish), the Perinatalogists and some Neonatal nurses and hospital administration personel. The doctors present gave us a standard breakdown of what to expect for labor and delivery as well as what would happen in an "ideal" situation after BC is born. As of now, the plan is to still have BC here in Austin at Seton Medical. After he is born, we will be able to hold our little boy briefly then he will be taken to the NICU to get started on some special medicine for his heart. Daddy gets to go with him though:) I will get to visit as soon as I can get myself into a wheel chair:)
Once in the NICU, BC will be assessed and the final decision for where he will have his surgery will be made based on the severity of his heart defects. Hopefully, we will be able to stay in Austin! (prayers for that because a major complication or worse case senario, means Dallas so that's not good) After I am discharged, (hopefully not before) BC will be transferred to Dell Children's where he will undergo surgery within the next couple of days. Dr. Finnigan said we should plan on being at Dell for 3 to 4 weeks, depending on the type of surgery BC requires.
We also got a tour of the NICU at Seton and it was very nice. They have a #3 NICU at Seton which is excellent! There were so many precious, tiny babies in there... needless to say, I got a little emotional when we left:) JR was very comforting and sweet to me... I have an amazing husband:) I am so very greatful for him:) All in all it was good to see everything and get familiar with the joint!
We have a meeting with Dr. Fox (Peds Cardio Surgeon at Dell) on December 13th.
Thanks you so much for your continued prayes and for taking time to care about our child and us:)
God is good!
Monday October 25th, 2010 ~
We went for our check up at the specialists (Perinatologist) office. We will only be meeting with Dr. Harstad (the Perinatologist) from now on because Dr. Finnigan (the Peds Cardio Doc) told us on our last visit that he had all the pics /info he needed 'til after birth. All of our appointments including today as well as going forward will be check ups that include an ultrasound in order to monitor BC's growth, amniotic fluid, etc.
Everything looked really great! BC's heart conditions are still present but his weight is right on target! He weighs 3.4lbs, which is in the 50 percentile of fetal growth for 30 weeks. So that's great! His fluids look really good and he is positioned head down, face down and ready for delivery:) Hopefully he stays that way! Although this is a great position for birth, it's not so great for pictures. We were able to get a really cute pic of his foot... which I will post under Baby Crosby.
We are very thankful that BC is growing big and strong. It's so very important! God is good:)
Our Care Conference is this Thursday so please continue to pray for that and I will have an update afterwards.
*Next specialist appointment is Tuesday, November 30th.
Monday - September 27th, 2010 ~
Today we met with the Cardiologist again, Dr. Finnigan. BC had another echocardiogram done and things look a little different then our first visit and diagnosis showed. Dr. Finnigan is now leaning toward the Interrupted Aortic Arch (IAA) actually being a Coarctation of the Aorta (CoA). He also infasized the diagnosis at this time is not exact. An IAA and a CoA look very similar structularly on an ultrasound/echocardiogram. Although they are two very different defects with different implications. What we do know for sure is that the VSD is certainly present and is accompanied by either an IAA or a CoA.
The differences between IAA and CoA are as follows:
1.) An IAA is exactly that, an interuption where the aortic arch completely stops and then picks back up again. So there is a gap between the two sides. CoA is different in that it is a narrowing of the aortic arch but the arch continues without interruption. It simply gets very small (too small to function correctly or adequately).
2.) CoA is not associated with DiGeorge Syndrome wich greatly decreases the chances for a chromosonal abnormality. So that's a very good thing.
For CoA diagrams please visite the following web site: http://www.pted.org/?id=coarctation1
Dr. Finnigan aslo indicated the presence of a Malaligned VSD. This means that near the place of the hole (VSD), in between the two ventricals, there is a piece of muscle tissue that could block or grow to block blood flow to the aortic intake valve. If the Malalignment is significant at birth, it will be addressed during the initial surgery as well. If it is either not present as thought or insignificant (very small), the surgeons may choose to leave it as is. It will be monitored frequently to see if it grows at all and creates a problem down the road. At which time surgery would be needed to remove it. The Malalignment is very much like a tumor in that it can be removed and regrow or never return... no way to tell which. This is a condtion that can go along with a VSD so it's seen a good amount.
A little more about CoA:
Typically there is a specific section in the aortic arch that is narrowed. The Severity of CoA depends on the length of the section effected. With extreme coarctation (a long section being narrowed), the entire transverse arch may be hypoplastic (narrowed). The severity of the narrowing will determine the type of surgerey and after care needed.
Both defects require syrgery after birth with the CoA being a more complicated surgical procedure. Prognosis is good for both. The identification of the specific defect does not change anything at this time, other than the decreased chance for DiGeorge. If the diagnosis remains unclear after birth, Dr. Finnigan will simply let the surgeons know that there is a possiblity for an IAA or a CoA along with the Malaligned VSD. The surgeon(s) will address the defects as needed during surgery and will be prepared in either event.
JR and I feel blessed that our baby has the access to such incredible doctors and medical technology. We also feel blessed that we live in a city that is big enough to have a chidren's hospital where BC can have his surgery.
Our prayer is that God will make it so that Dr. Forbess is in Austin to do the surgery with Dr. Fox. Dr. Forbess is a leading Peds Cardio Thorasic Surgeon out of Dallas. He is also the chief surgeon over the peds cardio surgery department at Austin's Dell Children's Hospital. He comes here twice a month to do surgery in consult with doctor Fox. Dr. Fox is the resident Peds Cardio Surgeon here in Austin at Dell. It's our understanding that Dr. Fox is extremely capable but has less experience than Dr. Forbess. We would like to have both of them present for the surgery. After BC is born, Dr. Finnigan said that Dr. Forbess will asses the situation either in person or via telephone to determine where the surgery should take place... Austin or Dallas.
Thank you so much for all of your continued support and prayers. They are much needed and very much appreciated. Our next special heart appointment is October 25th. We also have a Care Consult on October 28th with Seton Medical where I will deliver. We will meet with their Labor & Delivery and NICU teams as well as some other doctors and people in administration in order to establish plans and awareness for BC's birth/aftercare. If there is any new news on BC's heart, I will post it then. Also, for those who want all the "normal" OB/pregnancy updates, please see the Baby Crosby link. Much Love!:)
Tuesday - August 31,2010 ~
JR and I met with a wonderful Pediatric Cardiologists named Dr. Finnigan this morning. After doing another echocardiogram and sonogram in consult with Dr. Harstad, he confirmed the diagnosis that Dr. Harstad had given us the previous Wednesday. That an Interrupted Aortic Arch with a sizable Ventricular Septal Defect is present in Baby Crosby's heart. Dr. Finnigan explained both defects to us in more detail and gave us an early prognosis for BC.
Dr. Finnigan said that BC's heart looks like a straight forward case of IAA with a medium sized VSD.
Interrupted aortic arch has been classified into 3 types (A, B, and C) based on the site of the aortic interruption.
In Type A interrupted left aortic arch, the arch interruption occurs distal to the origin of the left subclavian artery.
In type B interrupted left aortic arch, the interruption occurs distal to the origin of the left common carotid artery.
In type C interrupted left aortic arch, the interruption occurs proximal to the origin of the left common carotid artery.
Of babies born with an IAA, Type
B interruptions account for about two thirds of cases, Type A occur in
about one third of cases, and Type C is present in less than 1% of
cases.
Interrupted Aortic Arch is associated with a chromosomal abnormality called DiGeorge Syndrome. Approximately 50% of patients with IAA Type B have DiGeorge Syndrome, whereas exceedingly few patients with IAA Type A have the deletion. Patients with IAA Type C have an even lower chance of having DiGeorge Syndrome.
BC shows no physical signs of any chromosomal abnormality. Dr. Finnigan is unable to diagnosis the Type of IAA at this time. We have chosen to forgo genetic testing prior to birth for both of these reasons as well as the reasons listed below.
1.) Our doctors have said that the presence of DiGeorge syndrome would not alter the pregnancy or birth plan for BC. Nor would it altar the doctor's plans for stabilization or surgery.
2. ) Doing an Amniocentesis (Form of Genetic Testing almost always done before 20 weeks gestation,) does present some risks. The most important in our case being the chance for premature labor which greatly diminishes BC's chance of survival. As of right now, BC has not reached 24 weeks gestation ( BC is 22 1/2 weeks) which means at this point his life is not viable outside of the womb. Babies, especially those with congenital heart conditions, do increasingly better the longer they can stay in the womb. So cook away little BC:)
In Short, doing the tests does not enhance life in any way for our baby in utero and could potentially do harm. Therefore, we don't believe the test is in BC's best interest.
As of now, the plan is to stabilize BC after birth in the NICU where he will be administered medication called, Prostaglandin E1, to keep the Patent Ductus Arteriosus open to aid blood flow to BC's body until surgery. PDA is a normal fetal anatomic structure that connects the systemic and pulmonary circulations in utero because the lungs are not inflated. The PDA usually closes shortly after birth as it is normally no longer needed once the lungs are in use. When BC is stabilized and examinations are complete he will undergo open heart surgery to correct the IAA and close the VSD.
(see: the link below for heart conditions and surgery diagrams)
The anticipated prognosis after surgery is very positive. Many babies grow into adulthood and live a long healthy life with no need to revisit the corrected IAA or VSD. Others have complications including Stenosis around the repaired IAA and/or a reopening can occur at the original site of the VSD. These complications are addressed as needed but are not expected. BC will need to be under a Cardiologist's care for the rest of his life but our prayer is he will not have to have anymore surgeries! God willing, he won't have to have a single one!
We know our almighty God is a surgeon above all others so we pray it is His will to heal our son's special heart. But we also trust His word when it says, "And we know that for those who love God all things work together for good, for those who are called according to his purpose". (Romans 8:28) Our God is always good, always faithful, always just and always with us. Praise God from who all belssings flow... like a river they have flooded our hearts and spirits during a trying time. What an amzing journey it is to walk with our savior. What joy it is to know real peace. Our prayer for all of you who are following BC's story , is that you are blessed by God along this journey and that He is revealed to you in your own life. Nothing is more important than knowing Him!
Our next appointment with the Cardiologists and Perinatal Specialists is on 9/27/10.
To learn more about BC's condition please see: http://www.pted.org/?id=interruptedarch1
Wednesday - August 25th, 2010 ~
Today, JR and I went to
the Perinatal Group of Austin to meet with a specialist in order to
confirm our OBGYN's, Dr. Kish, diagnosis of a Ventricular Septal Defect
(VSD) being present in our son's heart. There we met with a very nice
doctor, Dr. Harstad. Upon doing an echocardiogram and sonogram, he was
able to cofirm the presence of a sizeable VSD as well as detect a rare
heart defect called an Interrupted Aortic Arch (IAA). He explained to
us that a VSD is a whole between the left and right ventricals that
allows oxiginated blood to flow from the left side of the heart into
the right side which has unoxiginated blood. The IAA, means that there
is a separation in the arch of the aorta where the two sides of the
arch did not come together when the heart was forming in utero. Leaving
the aortic arch in two pieces. That's pretty much all we know now but a
full diagnosis and prognosis will be given to us on Tuesday the 31st
when we meet with the Pediatric Cardiologist.
