Benji was born March 2, 2005. He was the smallest baby that I gave birth to weighing in at 8lb 13 1/2 ozs. When I first saw him his color was off. He wasn't a blue baby, but my other three births, the babies were almost orange. I asked about it the nurses ignored me, seems he wasn't the one having issues right after birth.
I pushed and kept asking. He cried, his weight was great! Or they thought.
Finally one of the nurses told us his Apgar was 8 and then 9. He was fine and she thought his color was good. She reminded me that since they had to use neubane on me that he would be sleepy. And she was right. He didn't want to nurse or a bottle all night. (He was born about 4p)
The following morning he still wasn't interested in nursing, this alarmed me. I asked the nurse about it and she had the pediatrician on call check him out. I will never forget that moment. Jeff had stepped out to get some coffee and a bite to eat. Dr. Brad came in and told me that while they believed that Benji was fine, they wanted to do some tests. When he examined him he heard a murmur, while murmurs are common, he still wanted to have the pediatric cardiologist to check him out. He went on to say that his main concern was because we lived forty-five minutes away.
Right after Dr. Brad left, Jeff got back. He got back to a wife that was trying to be very strong and felt like she was going to break down. We immediately called everybody we could. Right before they took him to have an echo-cardiogram, I finally got Benji to nurse. I took that as a sign that Benji was going to be fine.
The two hours they ran tests were excruciating.
Dr. Hermo came into the room with a grim poker face. She thought we knew some of what was going on and shared with us that Benji was very sick. The worse was that his aorta was too narrow for the blood to pass through to the lower half of his body. He had a CoArctation of the Aorta. This wasn't all that was wrong. He also had a bicuspid aortic valve with stenosis. To keep him alive, they were giving him medication to keep the in-utero valve open so his blood would continue pumping. We were leaving Baptist Hospital in Nashville and heading over to Vanderbilt Children's Hospital.
We were terrified. No words can explain the feelings we had.
At VCH we were in NICU until his surgery. It was very difficult to not stay by his side. We were very blessed with friends and family that took care of the other kids and checked in on us regularly.
We almost lost him once. The Monday before his surgery, the nurses assured us he was fine and we should get out of the hospital. We had been there non-stop since he got there. We prayed over him, loved on him and went to eat. We were about to order dinner when we got the call. We heart stopped. There was something wrong. We paid, rushed out as we were making phone calls and got back to the hospital. By the time we got there he was okay. They had to restart the medication on him that they stopped on Friday. He had to have surgery. No ifs, and's, or buts.
His surgery was scheduled for the Wednesday morning slot. We got pushed back to the afternoon slot. It was agonizing, but we were at peace. We knew if it was meant for Benji to leave us he would have the Monday.
The surgery went great. His CoA was much worse than they thought, but they took care of it with the subclavian flap procedure. They left the valve alone for now. Aside from being on heart medication and having to be under bilirubin lights, he recovered quickly. Only spent 18 hours in the PICU. He was discharged the Sunday after his surgery.
Against the odds that were given to us, Benji has not had to have any other procedures. In fact, Benji's stenosis in his aortic valve has gone from moderate/severe to mild. While we believe that Benji is still with us because he had some awesome doctors, we believe those doctors were in place because of God. We have prayed over and over for a miracle and over and over we get answers. It pains me to see others in the same place and lose their babies. I can only hold comfort in the Lord because I know my faith in Him has brought us through.
Benji does have other issues that we have to work through with him. He has several allergies/intolerances when it comes to food. He is completely dairy intolerant and soy intolerant. Both will irritate his digestive track something fierce and make him quite cranky. He is also allergic to the FD&C food colorings, specific to Red 40, Yellow 5 & 6. In addition, his system does not process the artificial sweeteners, including high fructose corn syrup. (This is in part because of the hypoglycemia.)
Benji's sensory processing disorder and hyperactivity make teaching him a challenge, but with behavior modifications he has been somewhat successful. Lately, we believe his hyperactivity and insomnia are contributing to frequent headaches. We are researching that with his doctor.
01/15/2014
In October 2015, Benji's developmental diagnosis was finally nailed down like jello to a tree. Officially it is ADHD combined, social pragmatic communication disorder, sensory processing disorder, and anxiety disorder. Unofficially the doctor said it is Asperger's Syndrome.
We still do not have a definitive answer to the headaches. Cardiology says it isn't his heart. The pediatrician says it could be sleep related except that even when he gets sleep there are times he has full blown migraines.
Heart wise there have been some changes. We are currently in a holding pattern waiting on word from the surgeon. Puberty struck and it always causes changes.
01/14/2017
