Sorry I haven't posted anything recently but a lot has happened over the past few days. Our little Hayes has made such great strides in the recovery process that the nurses and doctors felt he could go home... so they released him! So now, Mom, Dad, and baby Hayes are home and adjusting to life as it should be. Hayes is doing exceptionally well! He seems to be quite sore, which it to be expected. Hayes will continue to be in good hands, other than that of his parents he will be regularly paying visits to his Pediatrician, Cardiologist, etc.
Thank you all for following the blog. It's because of all your continued prayers that our little angel Hayes is where he's at today. The family truly appreciates in so many ways!
Tuesday, May 25, 2010
Wednesday, May 19, 2010
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Tuesday/Wednesday
Happy 1 week birthday to Hayes Thomas! Can't believe it's been a week already! The little guy has been through more in one week than most of have or ever will in our lifetime! What a strong, amazing little boy our lives have been blessed with.
Over the course of the past few days Hayes has made great progress. He has had the IV removed from his foot, the high flow oxygen has been replaced with normal oxygen, the drain out of his incision has been removed, and with the help of an occupational therapist, he's began eating (or drinking as Lena likes to call it) out of a bottle! Everyday it seems that more & more tubes/cords are removed from his little body! This little guy one tough little cookie! :)
Over the course of the past few days Hayes has made great progress. He has had the IV removed from his foot, the high flow oxygen has been replaced with normal oxygen, the drain out of his incision has been removed, and with the help of an occupational therapist, he's began eating (or drinking as Lena likes to call it) out of a bottle! Everyday it seems that more & more tubes/cords are removed from his little body! This little guy one tough little cookie! :)
Monday, May 17, 2010
Monday's Progress
Hayes is doing really well today! They were able to remove his Femoral IV & Catheter today. The only unfortunate part is that since they removed his Femoral IV he has been unable to eat which has caused him to be a little fussy. He should be able to eat a little pedilite with in the next hour or so! And hopefully by tomorrow he will be able to start having milk again thru a bottle! They had to give him something for his blood pressure today but they say that is to be expected after heart surgery!
Sarah & Hayden were both able to finally hold him today too! They said it was the greatest feeling ever!!! :)
Sarah & Hayden were both able to finally hold him today too! They said it was the greatest feeling ever!!! :)
Sunday, May 16, 2010
Next Phase... Recovery
Hayes is in recovery and doing well. They took the ventilator out and he is doing great breathing on his own. As long as all goes well, Hayes will be spending about the next two weeks in recovery in the CV(Cardio Vascular)ICU. Hayden and Sarah have been so strong through this whole ordeal. They will be staying tonight at the hospital again and moving tomorrow night to the Ronald McDonald House or to a Hotel. Please continue to pray for a speedy recovery! We can't wait until Hayes is home!
Hayes is out of Surgery
Hayes is done with surgery. The surgeon just came in and said that everything went very well. Everyone is now just anxiously awaiting for Hayes to make it back up here to the CVICU to begin recovery. Once he gets to CVICU we will have a better idea of the recovery process. Mom and Dad are also hanging in there and doing very well! Knowing Hayes has made it through the surgery is a huge weight lifted off their shoulders! Thank you again for all the love & support!
One thing the surgeon did discover during surgery is that Hayes only has two leaflets on his aortic valve, rather than 3. This is commonly associated with Coarctation of the Aorta and is not a cause for concern at this time.
One thing the surgeon did discover during surgery is that Hayes only has two leaflets on his aortic valve, rather than 3. This is commonly associated with Coarctation of the Aorta and is not a cause for concern at this time.
Hayes is in Surgery
Hayes went into surgery around 9:00. Surgery is about 4 hours, so around 1:00 we should have more information.
Thank you all for your thoughts and prayers. Hayden, Sarah & their families really appreciate it!
Thank you all for your thoughts and prayers. Hayden, Sarah & their families really appreciate it!
Saturday, May 15, 2010
Surgery Update
Hayes is still set to have surgery tomorrow morning. It has been pushed back. He is now scheduled to be the second surgery of the day, which could begin late morning to early afternoon. I will post an update again tomorrow morning when he goes in. Please continue to keep him in your thoughts and prayers!
Saturday Afternoon/Evening
Hayes was baptised by the hospital chaplain today at 3:30. It was a very short and sweet little baptism. Hayden and Sarah have every plan to have Hayes baptised again at Grace Lutheran for all the family and friends that would like to be there!
Hayes is still having a good day. All vital signs are good. They moved up the ventilator tube so his oxygen saturation is better, nearly 100%! He continues to pee regularly and even had a full diaper! Things are looking good!
Hayes is still having a good day. All vital signs are good. They moved up the ventilator tube so his oxygen saturation is better, nearly 100%! He continues to pee regularly and even had a full diaper! Things are looking good!
Saturday Morning
Per Sarah, Hayes is peeing like a champ! GOOD NEWS!! :)
Hayden and Sarah have set up for a Chaplain to come in and have Hayes baptised at 3:30 this afternoon.
More to come later today...
Hayden and Sarah have set up for a Chaplain to come in and have Hayes baptised at 3:30 this afternoon.
More to come later today...
Friday Night with Hayes
Hayes is doing really well. The nurses say he is very stable. They were able to get the IV in his arm like they had hoped. Unfortunately, they still have to get ANOTHER one in his other arm in order to do the surgery. Hayes is taking in lots of vitamins & nutrients.
The surgery is still scheduled for 9:00 Sunday morning. Hayden and Sarah were able to talk to the doctors and got a lot more information about the surgery. The surgery lasts about 4 hours (a lot of which is used for prepping.) Basically, the surgeons will be cutting out the piece of the aortic arch that is narrowed and will be sewing the two ends back together. This surgery has an extremely high success rate and in more than 98% of cases goes smoothly. The Dr. that will be performing the surgery has been doing it for over 15 years and is considered to be one of the best in the nation. So, Hayes will be in good hands! Hayes will be spending about two weeks in recovery at Stanford, or could possibly even be moved back to Sutter Memorial.
Just about the time we were getting ready to leave last night, Sarah came in with some great news... Hayes peeed, and peeed A LOT (per her words!)... YAY!
The surgery is still scheduled for 9:00 Sunday morning. Hayden and Sarah were able to talk to the doctors and got a lot more information about the surgery. The surgery lasts about 4 hours (a lot of which is used for prepping.) Basically, the surgeons will be cutting out the piece of the aortic arch that is narrowed and will be sewing the two ends back together. This surgery has an extremely high success rate and in more than 98% of cases goes smoothly. The Dr. that will be performing the surgery has been doing it for over 15 years and is considered to be one of the best in the nation. So, Hayes will be in good hands! Hayes will be spending about two weeks in recovery at Stanford, or could possibly even be moved back to Sutter Memorial.
Just about the time we were getting ready to leave last night, Sarah came in with some great news... Hayes peeed, and peeed A LOT (per her words!)... YAY!
Friday, May 14, 2010
Surgery Scheduled
It looks like surgery has been scheduled for Sunday, May 16th at 9:00 A.M.
Good news: looks like they found a vein, no Pick Line yet, but they have a vein!
Bad news: he's not urinating and they don't know why. Trying to figure it out. More to come...
Good news: looks like they found a vein, no Pick Line yet, but they have a vein!
Bad news: he's not urinating and they don't know why. Trying to figure it out. More to come...
Hayes has arrived at Stanford
As of a few hours ago, Hayes, Sarah & Hayden have all arrived at Stanford's Lucille Packards Children Hospital in Palo Alto. Hayes immediately began to go thru a lot of testing. Much of the same testing he had last night. Hayden & Sarah met with the Nurses & Nurse Practitioners right off the bat. The nurses informed them that they are keeping him sedated not necessarily because they have to but because it makes it easier for them because Hayes is an active little guy & so Hayes doesn't have to breath so frantically. They also informed Sarah & Hayden that they have put Hayes on Adavan.
A slight change from last night...
We found out that the Femoral Artery that they got the IV in last night is only a short term fix. It's not good for the long term. So, they are back to square one and are poking and prodding at Hayes in hopes to find a vein to put an Pick Line in (which serves as a more permanent IV). They were hoping to get it in the brecial vein (sp?, the vein on the inside of the arm). At this point, Hayes is getting some nutrients through the IV but once they get a Pick Line in they will begin to give Hayes a heavier dose of vitamins & minerals.
As for now, we are just waiting for all the tests results to come in. Once they have collaborative results, the Dr.'s will get together to decide when to do the surgery.
According to the nurse at Stanford, Hayes is very, very stable. On a level from 1 to 10 the nurse says a 6 or 7.
As for Hayden & Sarah, they met with a Social Worker who helped them get a room for the next 3 nights at the hospital. They have put their name on a list for the Ronald McDonald House for the nights following and are hopeful they will get a room their for the remainder of their stay at Stanford.
Rumor has it, they could be looking at surgery as early as tomorrow. More to come...
Please keep praying for our dearest little Hayes!
A slight change from last night...
We found out that the Femoral Artery that they got the IV in last night is only a short term fix. It's not good for the long term. So, they are back to square one and are poking and prodding at Hayes in hopes to find a vein to put an Pick Line in (which serves as a more permanent IV). They were hoping to get it in the brecial vein (sp?, the vein on the inside of the arm). At this point, Hayes is getting some nutrients through the IV but once they get a Pick Line in they will begin to give Hayes a heavier dose of vitamins & minerals.
As for now, we are just waiting for all the tests results to come in. Once they have collaborative results, the Dr.'s will get together to decide when to do the surgery.
According to the nurse at Stanford, Hayes is very, very stable. On a level from 1 to 10 the nurse says a 6 or 7.
As for Hayden & Sarah, they met with a Social Worker who helped them get a room for the next 3 nights at the hospital. They have put their name on a list for the Ronald McDonald House for the nights following and are hopeful they will get a room their for the remainder of their stay at Stanford.
Rumor has it, they could be looking at surgery as early as tomorrow. More to come...
Please keep praying for our dearest little Hayes!
5.14 -on the way to Stanford...
At 6:20am Hayes was transfered to Children's Hosptial at Standford. He will be staying on the ventilator and remain sedated until after the surgery. Once he has arrived at Stanford, (he is going on an ambulance, the ride is about two hours) he will be completely assessed for about two hours, and then the doctors will have a better idea of the next steps, including the date and time of surgery.
At this time, please make sure to share your well wishes and questions here on the blog, and respect Hayden and Sarah's privacy. They have turned their phones off in order to focus on Hayes so please, wait for them to call you. Thanks!
Keep checking back here and posting!
At this time, please make sure to share your well wishes and questions here on the blog, and respect Hayden and Sarah's privacy. They have turned their phones off in order to focus on Hayes so please, wait for them to call you. Thanks!
Keep checking back here and posting!
Arrived at Sutter...
Hayes arrived at Sutter Hospital on 5/13 at 6pm. He was stable and another Ultrasound was ordered. Sarah and Hayden met with Dr. Nazaroft, a surgeon, who scheduled the corrective surgery for NEXT Thursday.
Around midnight, the family left the hospital, we were all feeling that Hayes was in good hands, has a healthy cry, good coloring, actively sucking on Sarah's sugar-water fingers and looks like a healthy baby.
Things changed...
Even after trying for several hours, the kind staff at Sutter wasn't able to get another IV into Hayes little body. Around 2am, Dr. Nararoft called over to Sarah and Hayden to let them know he needed to put in a femoral IV. Since it took so long, Hayes developed acidosis (build up of acid waste in the blood) and Dr. Nazaroft decided to sedate Hayes and give him medicine to paralyze him and make him comfortable. The medicine that keeps the valves open has the nasty side effect of stopping breathing, so as a precaution, Hayes was put on a ventilator, as well. The doctors also mentioned that being ventilated is easier on infants than adults.
The IV insertion went well. Hayes is on medicine for his heart, keep the valves open, foods and fluids. Hayes wasn't tolerating this as well as they wanted, and so the Dr is transferring Hayes to Stanford on 5.14. feeling he could perform the surgery soon there. Stanford has a world class pediatric cardiac unit and Dr. Nararoft has a partner he works with there, so Hayes will continue to be in great hands.
Sarah went and visited Hayes before the transfer began. She is extremely positive about the way he looked, aside from the fact he is sedated.
Around midnight, the family left the hospital, we were all feeling that Hayes was in good hands, has a healthy cry, good coloring, actively sucking on Sarah's sugar-water fingers and looks like a healthy baby.
Things changed...
Even after trying for several hours, the kind staff at Sutter wasn't able to get another IV into Hayes little body. Around 2am, Dr. Nararoft called over to Sarah and Hayden to let them know he needed to put in a femoral IV. Since it took so long, Hayes developed acidosis (build up of acid waste in the blood) and Dr. Nazaroft decided to sedate Hayes and give him medicine to paralyze him and make him comfortable. The medicine that keeps the valves open has the nasty side effect of stopping breathing, so as a precaution, Hayes was put on a ventilator, as well. The doctors also mentioned that being ventilated is easier on infants than adults.
The IV insertion went well. Hayes is on medicine for his heart, keep the valves open, foods and fluids. Hayes wasn't tolerating this as well as they wanted, and so the Dr is transferring Hayes to Stanford on 5.14. feeling he could perform the surgery soon there. Stanford has a world class pediatric cardiac unit and Dr. Nararoft has a partner he works with there, so Hayes will continue to be in great hands.
Sarah went and visited Hayes before the transfer began. She is extremely positive about the way he looked, aside from the fact he is sedated.
Begining at Enloe...
Hayes was being treated in ICU for jaundice and fluid in the lungs (which is pretty common) when Nurse Adrienne discovered what she believed to be a heart murmur. It was such a blessing that she heard something and thought something wasn't right with his coloring... She called in Pediatrician Dr. Stanley, who assessed and ordered a heart ultrasound. When the Ultrasound was completed, they discovered Hayes has coarctation of the aorta. At Enloe, Dr.Stanley ordered Hayes to be transferd by air to Sutter Memorial Hospital in Sacramento. He started an IV prep with medications to keep the heart valve open, in order to bypass the area affected by the condition. This is a condition which can be completely corrected by surgery, as a one shot deal. THe outcomes are good, and most often don't need any follow up.
Here is an explanation of Hayes condition from Children's Hospital:
What is Coarctation of the aorta?
When the heart is functioning normally, a large artery called the aorta carries oxygen-rich (red) blood from the left ventricle to the body. It is shaped like a candy cane, with the first section moving up toward the head (ascending aorta), then curving in a C-shape as smaller arteries that are attached to it carry blood to the head and arms (aortic arch). After the curve, the aorta becomes straight again, and moves downward toward the abdomen, carrying blood to the lower part of the body (descending aorta).
Coarctation of the aorta, a congenital (present at birth) defect, occurs when the aorta narrows or becomes pinched. Coarctation can occur anywhere in the aorta, but is most likely to happen in the segment just after the aortic arch. This narrowing restricts the amount of oxygen-rich (red) blood that can travel to the lower part of the body. Varying degrees of narrowing can occur.
The more severe the narrowing, the more symptoms a child will experience, and the earlier the problem will be noticed. In some cases, coarctation is noted in infancy. In others, however, it may not be noted until school-age or adolescence.
Seventy-five percent of children with coarctation of the aorta also have a bicuspid aortic valve -- a valve that has two leaflets instead of the usual three.
Coarctation of the aorta occurs in about 6 to 8 percent of all children with congenital heart disease. Boys have the defect twice as often as girls do.
Here is an explanation of Hayes condition from Children's Hospital:
What is Coarctation of the aorta?
When the heart is functioning normally, a large artery called the aorta carries oxygen-rich (red) blood from the left ventricle to the body. It is shaped like a candy cane, with the first section moving up toward the head (ascending aorta), then curving in a C-shape as smaller arteries that are attached to it carry blood to the head and arms (aortic arch). After the curve, the aorta becomes straight again, and moves downward toward the abdomen, carrying blood to the lower part of the body (descending aorta).
Coarctation of the aorta, a congenital (present at birth) defect, occurs when the aorta narrows or becomes pinched. Coarctation can occur anywhere in the aorta, but is most likely to happen in the segment just after the aortic arch. This narrowing restricts the amount of oxygen-rich (red) blood that can travel to the lower part of the body. Varying degrees of narrowing can occur.
The more severe the narrowing, the more symptoms a child will experience, and the earlier the problem will be noticed. In some cases, coarctation is noted in infancy. In others, however, it may not be noted until school-age or adolescence.
Seventy-five percent of children with coarctation of the aorta also have a bicuspid aortic valve -- a valve that has two leaflets instead of the usual three.
Coarctation of the aorta occurs in about 6 to 8 percent of all children with congenital heart disease. Boys have the defect twice as often as girls do.
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