Lil Bobby was born on April 18th, 2009 weighing in at 5 pounds 4 ounces. He was born with a heart defect known as Pulmonary Atresia with Ventricular Septal Defect (VSD). In Pulmonary Atresia there is no pulmonary valve, so blood can not flow from the right ventricle(pumping chamber) through the pulmonary artery to the lungs. There is a large hole in the wall that separates the two ventricles. (VSD) This allows oxygen-poor blood to flow into the left ventricle and go out the aorta to the body. The only blood flow to the lungs may come from a patent ductus arteriosus (PDA) a vessel between the pulmonary artery and the aorta or multiple collateral arteries and the aorta or other arteries to the pulmonary artery. The PDA was the only source of blood flow to the lungs in which Lil Bobby was given prostaglandins a drug to keep the PDA open, with out this drug the PDA would close causing no blood flow to the lungs. With this being said a baby with this condition needs immediate treatment. Hours after Bobby was born he started to decline without knowing what was the cause the Decorah hospital transferred him to St. Mary's with the neonatal unit coming. Upon arrival to the neonatal unit on April 19th he received an Echo of his heart and we were told the news of the defect and that he would need to have open heart surgery, letting him get stable enough for surgery would last the next few days, with surgery on April 22nd which they put in a Blalock- Taussig Shunt (BT shunt) and closed off the PDA. After a week of recovery he was discharged and we have had many check ups and echo's in the last 5 months.
With this they think that it is time for the next procedure, which will take place at St. Mary's on September 29th, Lil Bobby will be admitted on the 28th. With the procedure that he is having done they are going to do a complete repair of the VSD and put in a conduit in place of the shunt that connects the pulmonary artery to the lungs this conduit will last 2-3 years. I will continue to post his progress. Please pray for Lil Bobby and my family.
Bobby's 2nd OHS was a success and he recovered well. We have been monitoring a cyst on his cerebellum since he was 6 days old, neurology referred up to opthomology to check his optic nerve for pressure, while they were went to check the optic nerve they were unable to see back into eyes due to cataracts, Bobby then ended up having surgery to remove these and implant artificial lenses May 2010. Bobby now has glasses and his eye sight is continuing to get better. Bobby has also underwent a Cath procedure to place a stent in his pulmonary artery conduit. Bobby also underwent brain surgery in Nov. 2010 to drain the cyst on his cerebellum that was causing pressure on his brain stem and causing projectile vomiting, this surgery was also a success, you can read his journal for more on recoveries of surgeries. Also in 2010-2011 the opthomoligist noticed a change in his left eye and Bobby underwent a sedated eye exam and it was found that his left retina had became detached so another surgery was planned, fast forward to now Jan. 2012 Bobby has had three surgeries to repair his retina and will have little to no vision in that eye, he does react to light, Bobby has now had 9 surgeries all before the age of three. Now in 2012 Bobby will be facing another eye surgery to remove the oil bubble from his left eye and to check the buckle to make sure it isn't causing any constrictions to the eye. Bobby will also be having another heart surgery, we find out the surgery date on January 3rd it is suppose to be sometime this coming Spring. I update CaringBridge often to let everyone know how Bobby is doing on a weekly basis. Bobby did reach one amazing accomplishment right before Christmas 2011 he starting WALKING on his own!! Thorough everything that he is been through he always seems to amaze us!! As of the end of 2012 Bobby has had a total of 12 surgeries these include more eye surgeries, for his left retina, we are now focused of keeping the eye healthy since we now know that he will not have vision in this eye, we will continue to monitor with sedated eye exams. Bobby had his 4th heart procudere done April 23rd, 2012 this was also his 3rd OHS and was a great sucess with a quick recovery. Bobby remains on heart failure meds as well as asprin as a blood thinner. We see his cardiolosgist every 6 months with echo's and chest x-rays. Bobby's special heart is healthy!
Nov 19, 2013 5:47pmFirst off I would like to thank all of you who took time to read my entry on November 17th, your kind words mean so much to me! We as a family have an amazing support system. To the ones I yell and cry to, the ones that pray from far away, the ones who simply read because they care and the ones we have never met you are all such a blessing. I know that Bobby has touched many people and so many care about him, and to us that is remarkable. I am so glad that all of our readers have heard Bobby roar, Chad that made me smile. Thank you.
So November 17th is a day my subconscious will never forget and I did think of this date late last week and put it to the back of my mind. November 17th is the day that Bobby had brain surgery 3 years ago.
This year on November 17 and all of this past weekend I swear Bobby had it out for me just doing naughty little things but on the 17th I was frustrated, irritated and worried. Now looking back at the date I have a better understanding of why I was and am feeling so anxious and worried. Three years ago was the hardest surgery, they have all been hard but this brain surgery scared me so much, between unexplained low heart rates that we couldn't figure out to being put back in the ICU after being out on the floor and me just simply not understanding the brain. The heart is very complex, the eyes yes they are complex but the brain for some reason I have a hard time understanding the many things that it does.
I just wanted to get these thoughts out there before we head in for the EEG tomorrow, to maybe calm my mind. I have been so worried since November 17th. Isn't it crazy how we remember things but not fully remember them all at once, see again the mind confuses me lol.
I do have a good feeling about this appointment tomorrow, I may not want to hear what the results show or maybe I will. This appointment will also be something that we as a family will get through, we will support Bobby in every way that we can!
I was just reading on Bobby's appointment for tomorrow and I must have missed the part that he can only have 4-5 hours of sleep tonight and we have to wake him up 2 hours earlier then normal, he is going to be so tired and so is this mama. He can have milk in the morning so that will make him happy when he is up at 4.
I will update on how his appointment goes tomorrow or Thursday. We may not have the results tomorrow if I remember correctly our doctor said that he was going to be out and would call us with the results or schedule an appointment, fingers crossed that all goes smooth and well.
Lots of Love and Heart Hugs,
Guestbook signed 0 times today
Bobby is a remarkable little boy and an inspiration. I will update with appointments and surgeries. Please sign his guestbook so we know you stopped by.
Bobby's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.