Timeline

2012

February 16th
        My precious baby arrived at 5:49p.m. at Akron General Hospital, Akron Ohio. 7lbs 7oz. 21 inches.  So calm. So quiet. Sweet as a button. Cal Louis Smith was perfect in every way. All LOVE. Left hospital (2/18) with jaundice level at 6 and weight measured at 7lbs 1oz. Recovery in and out of hospital was speedy.

February 21st
       Brad took Cal to Kids in the Sun, Strongsville Ohio, for a weight check. 7lbs 4oz. Started to gain weight :)  Doctor mentioned he was slightly jaundice - at a level of 14 or so. Told to keep an eye on it.

February 25th
        Really started to notice yellowing of the eyes and would sleep 23 hours a day, everyday. Something seems unusual.

February 26th
      Cal looks yellow, sleeps all day and night. I feel he has rapid breathing 100% of the time.  Sometimes I catch a glimpse of blue around his lips. His urine seemed a different color??

February 27th
       Made an appointment with pediatrician today. Took Cal in. Dr. Golonka was very concerned. Suggested heading to the emergency room at Rainbow Babies and Children Hospital in Cleveland for:
  • low blood pressure
  • low oxygen level
  • blue around lips and fingers
  • jaundice
  • heart murmur
  • fatigue
  • rapid breathing
  • increased heart rate
  • poor eating within last 24 hours
ER room - things checked out okay. Oxygen level was 97 out of 100. Blood pressure was normal. x-ray of the heart was slightly enlarged, jaundice level was high but not high enough to admit under a light. The ER doctor believes it is due to breastfeeding. Was told to continue nursing and it will get better. Breathing was at 63 times a minute (normal average is 30-40). Never admitted and was sent home after he had a normal feeding. Took samples of his eyes (a little oozy) which came back normal along with the blood work taken.

March 2nd
       Two week check-up. Cal weighed 8lbs. An echocardiogram was set up back at Rainbow Babies to see why Cal has a heart murmur and what is causing it. Doctor mentioned most murmurs go away after a year or so. Cal was looking a lot better. Still sleeping a lot though

March 7th
        Echocardiogram at 3:00p.m. Met Dr. Manish Bansal. It was found that Cal has two heart defects. VSD and ASD. VSD is very large with a possibility of open heart surgery to close the hole. ASD is of little to no concern. Dr. Bansal explained to us the possible side affects of a VSD.  Very scary and sad. However, we know Cal's heart was made of gold. He is such a lover! We mentioned that Cal continues to have rapid breathing (non-stop, about 70 times a minute) but otherwise is doing good. He reviewed with us what will happen in the next few weeks. Goal is to get Cal to 13lbs, as of now he is 8lbs 6oz.

March 19th
        Went to Akron Children's for a second opinion with Dr. Bockoven. He found the ASD and VSD as well but mentioned tissue on one side of the hole of the VSD that may make the hole smaller. We decided to stick with Dr. Bansal since we felt he could give Cal the best care possible. Cal continues to brighten up my world. The love I have for him is undeniable. He melts my heart in so many ways. Such a sweetheart.

March 20th
       Second appointment with Dr. Bansal at Rainbow Babies to do an electrocardiogram. Test came back normal. The doctor is very happy Cal is thriving and gaining weight, 9.7 lbs. He was put on Lasix to help slow down his breathing and to get rid of the extra fluid in his lungs. Cal has entered mild stages of heart failure. We mentioned to Bansal about the tissue and asked for his thoughts. He said it was a 10/90 chance the tissue would make the hole smaller. :(

March 28th
        Weight check with pediatrician. Dr. Golonka is very happy with weight. The goal is to gain an ounce a day.

April 3rd
       Echocardiogram with Bansal. The tissue has not grown at all on the one side. His aortic valve is slightly leaking. Cal is not in full heart failure so we continue to monitor him at home.

April 6th
       Emailed Bansal. Cal hasn't been alert for more then 10 minutes in a 24-36 hour period.  To sleepy to eat. Bansal decided to double his dose and start giving Lasix twice a day.

April 10th
       Cal has started to coo and smile when he sees Mommy, Daddy, and especially Liam. His smile lights up the room. He is constantly talking and babbling. He has so much to say! He is such a happy baby, without a care in the world. I don't think I could admire him any more than i do. He is such an inspiration. Love him with all my heart.

April 20th
       Weight check and two month shots. Weighs 11lbs 4oz. At this rate he will reach the ideal weight in two weeks.

May 8th
       Echocardiogram.  His breathing rate has decreased due to the medicine. The double dose of Lasix is proven to be the right amount.  Prayers are also starting to be answered in regards to the VSD.  The tissue has grown on one side of the hole to make it slightly smaller. The aortic valve regurgitation (leak) is staying the same, still trivial. The doctor is very encouraged by his weight (12.4 lbs), size of the hole, and that Cal continues to fight. He has moved his chances of not having surgery to 30/70. 30% chance of walking away from it all. I'll take it, even if the other number is higher!  (noticed aorta dilation for the first time. Wasn't mentioned to us until later on)

This whole journey is very humbling. Cal is one of the bravest, strongest people I know. You would never know how hard his body is working by looking at him. He flirts with everyone with his cute little grin and playfulness. I'm honored every day I get to spend with him. He is such a joy to be around.

June 19th
      Echocardiogram. The hole, VSD, continues to get smaller by the tissue. However the aortic valve has moved from trivial to moderate with the leakage. Dr. Bansal is going to meet with a team of doctors to discuss Cal's case to see what the others think. Cal is still gaining an ounce a day against all odds!

June 28th
      Phone call from Bansal. The board of doctors all agree to hold off surgery at this time but we need to keep an eye on the valve.

July 17th
      Echocardiogram. ASD and VSD are looking good. The regurgitation is still at moderate. More bad news arise, The aortic valve has prolapsed. Bansal is 50/50 about surgery and decides to call another meeting with the doctors to discuss what is now taking place.  We should be receiving a phone call the next day as to where we go from here. Things don't seem to be looking good for our family. Even though we don't want Cal to go through such a dramatic surgery, we do want what is best for him. We want him to live his best life possible, for him to be heart healthy. With that thought alone it seems as though surgery is the only solution.

July 18th
       The phone call from the doctor has arrived. It is unanimous. All doctors agree on surgery. They do not want the valve to prolapse anymore and the only way to stop it is to take the pressure off the valve by closing the VSD. They believe surgery will fix the prolapse and regurgitation or at least minimize it. So, the surgeon will patch the ASD and VSD. The valve is to be left alone. If, by a small chance, the aortic valve prolapse and regurgitation stays the same then we will be entering valve replacements at a later date.

July 19th
      We met the surgeon today. He seems very confident the surgery will fix the prolapse and bring the leak from moderate back down to trivial. Blood work and an x-ray were taken to prep for surgery. Surgery Date: August 8, 2012.  My first impression of the surgeon was positive. He presents himself very well and seems extremely knowledgeable.  As soon as he walked in the door I felt good about leaving my trust in him in regards to my son. After 5 1/2 months of caring for Cal it will be very hard for me to sit back and let someone else take control. Thankfully he will also be in the hands of God and faith will take over, as well. With that being said I am ready for all that lies ahead. I'm ready for my child to be struggle free. As much as I trust God and the surgeon, I also have trust in Cal. He will fight through. My Hero. We are prepped, prepared and Ready!

August 7th
      Cal woke up with a bloody nose. He has also been slightly congested. I called the nurse practitioner and emailed Bansal to make them aware. Surgery is still a go. They do not seem to be too concerned.

August 8th
       Day of surgery. Michelle Legan arrived at 6:00a.m. to take care of Liam. We were to be at the hospital by 7:00a.m. Luckily, we were able to be with him for the first hour. Once we were asked to leave we joined our family in the waiting room. The nurse practitioner updated us hourly. At 11:00a.m. we received the news that the heart was off the machine and beating on its own. At 1:00p.m. we met with the surgeon. He stated everything went great. Cal was on the bypass machine for less than one hour which is unheard of. Therefore, his body didn't go through significant trauma due to the short amount of time it took. Prolapse is gone. The leak is now trivial. Once we were able to see Cal, tears filled up with pride and joy. The ongoing battle was over for him. He looked stunning. He was taking very short breaths. Pain meds were given once he started taking deeper breaths, which took quit a while.  Brad and I spent the night with our Heart Warrior. Blood work and x-rays were done throughout the night. Machines beeped repeatedly. Nurses were unbelievable. They were doing anything and everything for our little one.

August 9th
       Morning rounds by the staff took place. An x-ray that was taken a few hours earlier showed possible fluid around his right lung. One doctor suggested putting another tube in to drain the fluid. The surgeon overruled him and said no to which he wanted to wait and see if it drains on its own. They are going to reposition Cal so the fluid has a chance to drain to a tube that is all ready there. There is still a possibility of surgery in the morning. He has lost 3 units of blood. There is blood in his urine. They took blood and urine samples. Cal sleeps most of the day. He is a little out of it due to the pain meds. He looks like an Angel. So peaceful and stress free.

August 10th
      Another x-ray taken in the middle of the night showed great improvement with the lung. It is now thought to be a collapsed lung instead of fluid.  Cal's breathing is much better - solid and effortlessly. Since his lung is doing better there is talk of going home soon, possibly tomorrow. The surgeon said he is doing remarkably well. He wants to get the catheter out as well as the rest of the tubes as soon as possible. Cal is such a fighter and a healer. They want him to do everything on his own. They have complete faith in him. So amazing! Another echocardiogram at 3:00p.m. All tubes are out by 4:00p.m. Cal continues to do fantastic. We are going to be released from PICU and sent to another area for one more night. Blood in urine is now assumed it was because of irritation of the catheter.  We found out today that they "gently separated" his ribs. There are pins holding them back together. Another x-ray in the morning is scheduled for his lungs. Nurses started offering him breast milk.

August 11th
       Woke up to all smiles by Cal. He's back and better then ever! Great way to start the day.  Surgeon came in and said the last x-ray showed very little cloudiness around the lung. They are excited to announce that he will be released today to come home, where he belongs.  We are going to use the Lasix medicine for a week to try to get rid of the little fluid that is present and return Monday for another x-ray. We are also to give pain meds as needed.
 
Home, Here We Come!!
 
August 14th
        Took our last and final x-ray. It showed that the lungs are completely clear. Dr. Auslender, one of the main doctors that was with us throughout Cal's time in the PICU, checked him over and cleaned his scar by removing the glue that was left over.  He was one of mine and Brad's favorite doctors, along with the surgeon and nurse Lucy. The entire staff was outstanding. They all became part of our family this last week and will never be forgotten.

August 31st
         6 month check-up with pediatrician. Wasn't able to get his shots at this time due to surgery.
 
September 26th
       Electrocardiogram, echocardiogram, and full exam took place. The two leaks, aortic valve regurgitation and the leak from the left over hole in the VSD are the same. Still very minor. No other news and everything is looking great.
 
 
 
2013
 
February 15th
        Electrocardiogram, echocardiogram, and full exam.  The leaks are trivial. Dr. Bansal mentioned he still has aorta dilation, which he had since he was 2 to 3 months. It is hoped that it doesn't enlarge anymore. If it does, there is a possibility of not being able to play any contact sports in the future.  If it doesn't, things will remain normal.

 
 
      


"I wept.  You fought.
I wondered.  You proved.
I prayed.  You overcame."
                                                                                   -Baby Katie - Flatline to Sunshine