Hmmmm!

When I worked in the NICU, we could quickly identify the little personalities of  our patients.  Bugsy was no exception. There was a day while he was at Egleston, that I could not go up to see him because little man
(Thomas my 8 year old), was sick. I called and spoke with the nurse every three hours and they let me talk to him. Well when I got there the next day, he wouldn't look at me. He refused to acknowledge my presence. The nurse thought I was making it up, until she came over, spoke to him ,he opened his eyes and looked at her. Being that I know myself and his father, I think part of his personality could be genetic! LOL  The whole it's my world and you are just invited. I thank God for his stubborn personality because I know that helped him to get to where he is today.

If I didn't mention it in my last blog, CDH babies have some developmental delays.This does not mean mental delays. It means that it may take them longer to achieve some milestones, like  supporting his own head or walking. When I first held him off the vent he held his head by himself. Mind you he was on a vent for about 6.5 weeks. Bugsy started laughing, belly laughing at 4.5 months. That is a 5.5 month milestone according to his pediatrician. Today he is 8 months and we have things we are working on. His fine motor skills are right on task for an 8 month old, his gross motor skills are not. What's the difference? Fine motor are things like tracking objects back and forth, up and down, reaching for things that are held out in front of him and picking things up. Gross motor are the bigger muscles, so rolling over, crawling, sitting up on his own, sitting without support. Where is Bugs? He can sit for a short time without support, meaning if I sit him on the bed, he will fall over in a few minutes.  He can sit supported. He just started rolling from his tummy to his side and back. And this week his physical therapist said he started scooting backwards.

Now he is baby number 5 and when I look back to my other kids and what they did at his age, I am not worried. Amber (my 15 year old) and Thomas walked, yes walked at 8 months. Isabel( my 11 year old)  didn't walk until she was a year old and Sabrina ( my 13 year old) didn't walk until she was about 15 months old. Now some might think with Sabrina's delay in walking might come other delays but not at all. She is gifted. I watch Bugs and I am in awe of the things he can do considering how far he has come. How often can you say you got to experience a miracle in the making? The doctors didn't think he'd make it out of the regular NICU more less home, but here he is. The healing power of Jesus is prevalent and I thank God everyday for blessing me with Bugs and the rest of my children. Our journey started out rough and we may hit bumps in the road but with the grace of our heavenly Father we will make through anything!

You never know where life will lead you!

The last two years have been like Mr. Toad's Wild Ride. What, for most would have been a great time in their life, for me it was a series of ups and downs, gains and losses, hits and misses. June 2009, I found myself  32 years old, single with 4 children and pregnant again. Not at all where I wanted to be in life, but I knew God had a greater plan for me than the one I had for myself. With the decision to keep my angel came the loss of the man I thought I knew and called my best friend. Our son didn't  fit into his life plan, which I knew before I told him I was pregnant.  With my head high, faith in God strong and the support of my family, I set forth on a journey I thought would be uneventful. Come on this was baby number 5, how hard could this be?

July 2009 I was diagnosed with PIH(pregnancy induced hypertension) and was started on medication.  If you've never taken blood pressure medication, let me tell you it makes you feel horrible. That and morning sickness from hell would become the norm for this pregnancy. Where most women gain weight during there pregnancy, I lost. By the day I delivered it was a total of 27.5 lbs lost. With all that I took a couple of months to just adjust and not work.

October 2009 I went in for my monthly ultrasound(my doctor Romero Nicholson scanned me monthly due to the blood pressure) and the tech requested I go to a perinatologist to confirm stomach placement. I thought nothing of it because I knew my God was in control. At 30 weeks gestation Bugsy was diagnosed with a Left Congenital Diaphragmatic Hernia. My heart stopped! What ?! Not my baby. I take care of these kids, I don't have one!  But there it was on the 2D screen. Dr. Allen was great, he treated me like I was a first time mom and not a nurse. He made consults for the surgeon, cardiologist and the neonatologist so I could touch base with all the players who would be involved with his care. When I left his office, I fell apart! I called my mom in a panic. She not knowing what I was talking about asked" How did he get a hernia? He can't lift anything yet." That made me laugh and at that moment I knew he was going to be healed. I serve a bigger God than any congenital abnormality.

January 2010 I was scheduled for a c-section on the 12th. I worked up until the night before I delivered. Yes I know I'm high strung, but what else was I going to do? I was excited about the scheduled section because I labored with the other four. Low and behold I went into labor! Why ?! I'm not scheduled until 9:30am and it is 12:30am. With my children, my girl friend Teresa and other friends, I labored. Everyone was great. Then at 8:45am the doctor came in and said he was taking me in and at 9:30am Giovanni Alejandro Rivera was born, 6lbs 15 oz, 22 inches long.

Something was missing, oh yeah he didn't cry! They intubated him immediately and started on getting him stable. Dr. Marino came over to tell me he was doing better that expected and transport was on the way.  At 13:30 Angel transport brought my baby up to me to say good bye. The nurse gave me a quick report and told me he was heavily sedated and would stay that way till after surgery. When I opened his transport crib, he opened his eyes and started crying. My heart again stopped! I am mommy and I can't fix this. The nurse was in awe because he should not have been able to open his eyes. I knew God was letting me know he gave me a fighter. I kissed his hand and they took him to Egleston where he would be for 119days.           

                         
Nothing he did was typical. He didn't have to be on ECMO(heart lung bypass), he was on a ventilator but he struggle. Surgery was postponed an extra week because he would crash when taken off the Nitric . The surgeon Dr. Richard Ricketts has done this type of surgery for over 21 years and he was uneasy about working on Bugsy.  When he finally did get his surgery, January 29,2010, which was done in the NICU, he surprised everyone. God guided him and everyone involved through it.


He remained on the vent, for what we thought would be a few more days. The weekend came and he crashed again! He went back in to PPHN(persistent pulmonary hypertension). Now the Drs are seriously worried. We can't live with PPHN, how was my baby going to make it home?  He pulled through! By the grace of God.  I was told he wouldn't have a testimony if it was easy overcome. We had several more crashes and hitting walls and scares, during our stay. I didn't get to hold him till he was 5 weeks old and didn't hear him cry till he was 6 weeks old. But April 28th I got to take Bugsy home.

He came home on oxygen, tube feeding and several medications. Since he was going to need therapy I started him at a daycare for medically fragile children. From April to September he has made some great improvements. His oxygen is only PRN( as needed), which has been not at all. Prays God! As of September 16th, he no longer needs to be on continuous feeding at night and is only tube feed if he tires before finishing his bottle. His Viagra for the PPHN is being weaned and he should be off shortly after his first birthday. And the last echo of his heart had no signs of PPHN. If you don't believe in God or the power of prayer, I am here to tell you that Bugs is proof of the healing power of God!

Our biggest problem lately is getting him to gain weight. It's not unusual for babies with CDH to "fail to thrive". Four weeks ago he was down to 12 lbs 5 oz. And now he is 13lbs 10 oz. I need to fatten him up.

Now that you are up to date with Bugsy's life journey thus far, come a long with us as we see where God's grace leads us!