Happy Birthday Giovanni!

To my angel baby on his 1st birthday,

As you lay next to me sleeping, my heart is filled with so many emotions. God knew you were going to be my son before I was ever a mother. When I was a little girl I never saw myself as a mother, more over a mother of five. When I met your father, neither one of us saw beyond the next couple of weeks nor were you in any plan we had. God had a different plan.

Your father had a way of making me smile from the inside out and from ear to ear. When he looked at me it was if the world stood still. He was one of my best friends in the world and I cherished our relationship. As some things do, it ended but before it did you came into my life. At first I could not figure out for the life of me why at that time you appeared, but I knew God had his reason. This past year has not been easy. I have cryed more tears, prayed more faithfully and have given over to God all my fears, with great faith knowing that through him all things broken can be restored. We have made it through your fight with the left CDH,PPHN, multiple infections, oxygen dependency, narcotic withdrawls, feeding problems and the hardest for mommy not having my friend to lean on through it all. You showed me that all I needed to lean on was God. He guided us through the storm to the calm waters. There is not a day that will ever go by that I will forget what a special gift God has giving me in you. From father to son, you are now the reason I smile from the inside out. I wouldn't change a step on our journey so far. Every inch , every yard, every mile has been a great learning and loving experience. The second lesson I learned was forgiveness. In the begining when you were going through all your ups and downs I said I would never forgive your father for not being there and I prayed about it and that changed. God spoke to me saying his love for us was unconditional and he has forgiven us of all sins, why would I deny your father of forgiveness, if I ever truely loved him. From that moment on my heart didn't hurt anymore. I forgave him of everything and prayed for him to come around. So just know it's promised to you that he will come around.  Well papito thank you for the lessons taught through you so far and mommy looks forward to the many years to come. I LOVE YOU Bugsy! HAPPY BIRTHDAY!

Jesus is the reason for the Season!

Let me start off  by saying Merry Christmas and Happy New Year to everyone. Our heavenly father sent us a Savior so that we may know his everlasting , unconditional love for us. So as this year comes to a close and a new one starts lets keep Christ in our hearts , not only during this season, but always.

This month Bugsy has been blessed in many ways. First he had a check up with his Pulmonologist and he was taken off the Viagra. He goes for an echo in two more weeks to ensure the pulmonary hypertension is resolved. We are standing fast on the healing he has received and know it is. His ear infections have cleared up, but in the process we found out he too is allergic to Sulfa. So health wise because God is so good, my son is healed and doing great.

The teething and allergies are making an other wise passive baby, unusually fuss and mostly at night . At 11 months I am experiencing the staying up at night or waking up several time during the night. I should have slept when he actually slept all night.  Honestly late night is the only time I can have him all to myself. I love that time. He hates the breathing treatments, the suctioning, Tylenol or Oragel, but he loves to lay on me as I pray and rock him to sleep. I look at him and am reminded how much God loves me. I am so blessed.

Recently the power of prayer and faith has again prevailed in our lives. Pieces of our heart have been missing and God bought a piece back to us and us back to them. I know my Heavenly Father will bring all the pieces together, in his time. Till then we thank him daily for all the blessings he has bestowed on us and the blessing that have yet to come. 

Thank you all for your prayers and support. Did I mention, in less than three weeks Giovanni Alejandro Rivera will be a year old. WOW! Glory to God ! Till next year. God bless you all.

Bugsy's first Holiday Season!

Bugsy  turned 10 months on November 12th! In two months he will be a year old. It's hard to believe that his first year is coming to an end. We have had tears, lots of tears, some laughs and smiles. No good journey is without its trials. Everything we have endured has made me a stronger person and has shown my kids that with Christ Jesus anything is possible.

This was his first Halloween and the kids were excited to dress him up , take him out and basically annoy him to no end. He was a tiger, it was so cute and he hated it. Lol. It was ok for the first few minutes but after he got tired of having his head covered. Along with the fact that he still had an ear infection and was on his second round of antibiotics....Biaxin. We were praying this would work. Can you imagine having two ear infections and teething, Ouch!

Well the Biaxin didn't work! Not completely anyway. His left ear is nice and clear but that right ear is still infected, so round three Bactram. That's a big dog, it kills everything! I also worry because his dad is allergic to sulfa and recently so is my youngest daughter. What are the odds nene would also be allergic? Like everything else Bugsy, its in the hands of our Heavenly Father and he has always taken care of my baby and our family.

His first Thanksgiving with so much to be thankful for, we spent the day with friends. He ate turkey, arroz con gandules, salad, pumpkin and apple pie. He loves food! Which for a child who was having trouble gaining weight is great!

As we go into the Christmas holiday, I have been blessed with a miracle all mine own, Bugsy! God has never let me endure hardship uncovered by his grace. Now this year is coming to a close and my son is healthy, thriving and a greater gift than I ever imagined. He is my rainbow, a constant reminder of God's promise, power, never ending grace and love.  Forever I will sing his praises and never will I forget who Jesus Christ is in my life. May I be a light on to others, who are going through their own journey, that with Jesus , even the hard times , will eventually become easy. 

God bless you all and Happy Holidays!

A new tooth :-) and we've been sick :-(

It's been a loooong two weeks. Bugsy has been sick. It started 4 days after he received his 1st synagis injection. Synagis is an injection to protect premature babies and babies with lung problems from RSV. RSV is Respiratory syncytial virus, it causes mild to severe respiratory infection. It is the number one reason babies are hospitalized each year. They receive an injection every 28-30 days during RSV season. 

So like I was saying, Bugs got his and 4 days later he started feeling bad.  I figured it was because the injection and he is teething. On Oct 19th, his first tooth came through. Now he has his second coming through. He spiked a fever of 103 and I took him to the doctor, low and behold he has two ear infections, possible strep and he was congested. My other babies never got ear infections or got sick at his age. They ordered 10 days of antibiotics twice a day and Albuterol nebulizer treatments every 4 hours. He completed the antibiotics last Saturday but he is still congested. Can I pull my hair out now? I haven't slept well since I found out he had CDH, but the last two weeks he has been awake from about midnight until 4 am. Eventually his sleep pattern will go back to normal, hopefully so will mine! Other than his cold he is doing well. He is up to 17 lbs, he eats everything. The GI doctor has him on a high calorie, high protein diet. We see the surgeon Nov 5th for a follow up to make sure his patch has not opened and measure his tummy to gauge when he will have his closure surgery done. He will also see pulmonary in Nov to wean his Viagra again. Soon he should be off the Vigra completely.

Bugsy  has started to scoot backwards. He only does it when he wants something. The same goes for him rolling. When he sees food or especially my cellphone, he rolls. He is sitting unsupported and can stand when he is holding on to something. Bugs is also trying to talk, he says dada and  bubu all the time. I can't wait for him to say mommy.  Before I know it he will be running around and talking. Well he is up early tonight so I will end this for now.

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!