Home Sweet Home!!!

The first week at home was amazing. Even though we had to get used to the whole sleeping thing it worked out great!!! We decided to give the baby a bath after his nine o'clock feed. We tried to keep him awake until at least eleven. Then we would get ready for his last feed at 12. The baby would go to bed until the next day at 6 or 7 in the morning. He makes noises at night, so the first two days were hard, we would jump to each sound, and even when we slept the interruptions did not allow a full rest. At 7, my mom and my mother in law would take the baby, and then we would sleep for an hour or two. This has worked great, but now my mom in law went back home, and my mom is going home in 2 weeks. I still have to figure out how we are going to do it when its just the 2 of us and the baby!!!!!!

We have done so many fun things with the baby. We took him to the mall, we went to eat out, we took him to church. We also had his follow up pediatrician appointment!!!! I have had a great time. He loves the stroller, the car seat, and anything that has to do with leaving the house.

At home we have been working hard on getting him leveled. I have been going online to see what kind of exercises we can do so he can start lifting his head during tummy time. It is paying off, even though he hates it, and cries every time. We bought him a bumbo seat. He sometimes likes to sit on it, and yet sometimes just screams. The baby gym is like his favorite toy. He loves to pull on the toys. He does not know how to reach yet, but if you help him grab it he will not let go. We also have this toy that has little animals hanging, every time you pull on an animal a new song will play, once he grabs one of the animals he will just pull and pull, and laugh . . . he is just so much fun!!!!!

Bath time is still not his favorite thing, but he is starting to like the feeling of sitting in the warm water!!!! He also loves the freedom of no cables. I thought he was going to miss all the alarms from the NICU, but he does just fine. He likes to watch TV with his daddy, it is just so cute to see them both!!! And we play children's music for him on the computer and he just stares at the videos!!!! It's the cutest thing!!!!

We have seen a lot of progress since we got home, he has gained at least 700grams, and he grew 1.5 cms in just one week!!! I guess there is nothing like home!!! We love the fact that we can wake up and just turn and see him. And that the first thing we see in the morning is just a huge smile. We feel in heaven!!!!

March

So Jorge turned 4 months, and we also celebrated uncle Felix's and daddy's birthday!!!!! Dad was so excited, thanks to Tanya, we were able to pull off a great surprise for him !!!!!!
We also spent our last holiday at the hospital, the baby looked so cute in his St. Patrick's outfit!!!!
This month has been amazing because Jorge bottle fed for the first time, he did great, but he strictured again soon after starting, so we are still on hold with oral feedings, but that is OK!!!!!!!!
The baby also got his fonduplication, we got rid of reflux and he is doing awesome!!!! He got a second dilation and a third dilation and recovered very fast.
As every cycle in life has a beginning and an end, so did our hospital stay. Even though we could not be happier we also felt a little sad. We have made so many friends, and for the past 4 months this has become our home.
March 20th was the day we got to bring him home, and once again my mom and my mother in law were here to see it happen. While we were in our care by parent room, we had tons of visitors. We had nurses and our doctors come say bye, as well as all the friends we made during our stay at the hospital!! It felt great to know that so many people cared so much about us. We cried every time we said bye, but at the same time we knew it was not the end and that we would be visiting very often!!!!!
We have to go to the hospital every two weeks for the baby to get his dilations. So I know for sure I will be seeing you often!!!!
The baby loved seeing a whole new world. He loved the car ride, and as soon as we got to our apartment it seemed as he knew this was his home!!! Feedings and sleeping went better than expected, we could not have asked for anything else.
We have seen so many miracles happen, Jorge is one special child, and we feel so lucky he chose us to be his parents!!!!
Also today we had to go give thanks to God for all his blessings, so we went to church as a family for the first time. Jorge behaved so well!!! we could not believe it!!!!!!
I thank each one of you that has prayed, cried, laughed, visited, cared for him, and those that have kept us in your thoughts, we are where we are today because of you!!! Please keep on praying for us, and remember that everything happens for a reason, and even if at the time it happens you don't understand it, eventually you will figure it out, and see it was for the best!!!!
So now it's late, we just fed the baby his last feed for the night, and put him in his crib!!!
I will keep you updated on his progress and ours as well!!!!
Good night!!!!

February

Once again we witnessed a miracle. Jorge self extubated himself and decided to fly. Against all odds, he was able to get off the ventilator, and doctors could not believe what they were witnessing!!!!! Our prayers had been heard, and we could not be happier.
February was the month of the gastroschisis babies, in our pod there were four babies born with this same problem. We immediately became friends with all their parents.
Jorge continued to do better with his breathing, everyday we would see improvement. Jorge also began to eat, and was getting stronger everyday.
Once again our families decided to visit us from all over. So we decided to surprise them, the same day they arrived Jorge was placed on high flow nasal cannula, he no longer had c-pap. When everyone started coming into the pod, and saw him, we all started crying together. It feels so great to know that so many people love your baby to the extent that they cry with you and for you when good and bad things happen. This to me is priceless!!!!!
We once again celebrated a holiday at the hospital, and we made the best of it, bought him a cute outfit, and had a blast since we had family over!!!!
Because of Jorge's esophageal atresia, he developed reflux, this caused his esophagus to stricture, so he needed to go to the OR one more time and get his esophagus dilated. We also learned that he had a hiatal hernia, and for this he needed a surgery called a fonduplication!!!
We were nervous, about the surgery but also knew that he needed it, and as one very smart nurse told us "Fonduplications are mom's friend", and we decided to go for it.
The month ended up great, the baby had been improving day by day, and finally we could see our discharge date coming really soon!!!!

January

So it is the first day of 2010, and Jorge turned two months. Jorge was still on the ventilator, and we were really worried. Jorge learned how to extubate himself. Yes, that is right, he took the ET tube out four times, and doctors were concerened that he could damage his vocal cords. Jorge kept on failing at every attempt he had to get off the respirator, and things did not look very good. The doctors called us, they wanted to talk to us in private, this could not be good. Jorge still had a leak, and until the leak was not closed he was not able to feed. It had been a month and he was still on TPN and Lipids. We did not know what to do, and again we cried and cried, and prayed and prayed!!!!
Jorge had several exams done, after two bronchoscopies we finally learned what was wrong with him. He had a little bit a tracheomalacia, he had broncheomalacia, and his right diaphragm was not working. Things had turned sour on us, and we knew that doctors wanted to give us bad news.
So we arrived at the meeting, and sure enough we heard what we thought was the worst news ever. Doctors told us that he needed a tracheostomy. When I heard these words, I just blocked myself from the rest of the conversation, I just could not believe what I was hearing. My husband who is usually the stronger one, broke down into tears and at the point I just felt our world was coming apart, and I did not even know how all of this had happened.
We came home, and talked about what was happening, I was completely opposed to the idea, but Jorge being the logical one in our relationship was almost convinced. We had a problem, we had different opinions, and this was not good. Thankfully when this all started we promised each other that decisions would only be made if we were both on agreement, so we decided to give it some more time before we agreed to this invasive procedure.
Once again we prayed and prayed and prayed, I wanted God to give an answer as of what to do. Well the answer was simple, follow your heart! and so I did. My heart told me to say NO!!! and Jorge agreed with me. We told the doctors we did not agree with the tracheostomy, and that we were going to give the baby as many chances as he needed, and that only if the baby's life was threatened, then we would start to consider it as an option.
This month also had good things. We were nervous because our baby was very fragile. We spoke with management because we wanted to get the same nurses to take care of him. We only had one primary nurse. We did not know we could have more than one. So we were told we could have as many primaries as we wanted. This is when we chose all our nurses. We asked our favorite nurses to be our primaries, and we could not be more blessed to have them take care of our angel!!!
We have no words to thank you all!!! Tanya, Mariamma, Marlene, Amy, Brooke, Jessica, Kristen, and Sandy you have been so great to us and to Jorge, you have no idea of how much you all mean to us!!!! Thank you one million times, he is where he is today because of your love, your care, and because of your dedication.

December

December was a month full of great news. Jorge was gaining weight, his feedings were going great, it seemed like we were on a roll, and all we needed was for him to get his surgery so we could finally go home, and be a normal family.
More family members arrived from all over, my sister came to visit, and so did Jorge's parents and his brothers. We had cousins, uncles, aunts, it felt great to have so many people by our side.
One afternoon we met Jorge's surgeon, we were told he was great and that we were going to love him, and they were right, he is amazing, and we are so gratefull that he has taken such good care of our baby!!!!!! Dr. Tsao told us he thought it would take about a year before he could get his repair surgery. He explained that the baby's esophagus would have to come out through the neck, and then they would have to strech it until it was long enough to connect to his stomach. I was devastated, I cried and cried, and prayed and prayed. We had our friends and family praying all over the world.
Someone once told me that a family that prays togethers stays together, and it was then that I realized how true this was, with little Jorge's problems Jorge and I got stronger, our love grew, and today we thank God because this experience has allowed us to see the world in a whole different way!!!!!
So our prayers were heard, Dr. Tsao decided to perform a test on the baby to see how big the gap between the esofagus and the stomach was. When he came out he gave the greatest and most unexpected news "The baby was ready for surgery"!!!!! No one could beleive it! This was a miracle!!!!
So on the 11 of December Jorge had his surgery, my husband's parents were here visiting and so was my mom, it was great to have them with us!!! Now all we needed was for the baby to recover and then we could finally go home!!!!!
How wrong were we, he was now repaired, but now we had a new problem, Jorge could not get off the ventilator. He had a leak on the repair site, so saliva was going into his body, because of this he got an infection. It seemed like we were never going to make it home.
December was tough, the idea of spending the holidays at the hospital did not feel right, but yet we had to make the best out of it, so we bought the baby Christmas and New Years outfits, and decided we would celebrate with family and then go to the Hospital.
On Christmas day, the baby finally got off the ventialtor and was placed on nasal cannula, we were thrilled, we hated watching our baby with that tube in his mouth, but the joy lasted very little, that same night he had to be placed back on the ventilator.
We celebrated New Years with the baby, it was different yet fun!!!
Jorge's second month was great, our baby had achieved so much, even when we encountered a few bumps along the way, one by one we were able to overcome, and again we felt we had grown both spiritually and emotianally!!! What a Journey!!!!!

Jorge's First Month

Jorge was born at The Woodlands Memorial Herman on November 1, 2009 at 10:32 p.m. That same night he was transported to Memorial Herman Children's Hospital. I was discharged at noon the next day because the baby was supposed to have surgery to correct his esophageal atresia (his stomach and esophagus were not connected). When we arrived at the hospital we learned that he had a very rare type of atresia, and that it would take sometime before it could be fixed. We also learned that his kidney was working perfectly fine and this news was music to our ears!!!!!!
We have been blessed with great families. Jorge's family arrived from Venezuela right after the baby's birth, and my mom was with me during the delivery. My dad passed away three years ago, but I know he has been by my side through this whole process.
Jorge's first surgery was scheduled on Friday; he was going to get a gtube placed in his stomach so he could feed. We were scared because his birth weight was kind of at the lower side. Because he was a preemie he weighed 3 lbs 11 oz. On Thursday November 5, we baptized him, this was the first time I was able to hold him besides the 3 seconds they allowed me to see him and hold him on the birthday. The baptism was very emotional, and the hospital was great, they allowed all our family to be in the pod!!!!!!!
Jorge's surgery went great, now all we needed was for him to have a stool so he could start feeding. It took him about a week, and then he finally did!!! We never thought we could be so excited about poop!!!!!
Jorge kept on doing great. He had been able to move to a big boy crib, he no longer needed c-pap!!!! Then we got our first scare. Jorge turned purple on us, he had lots of secretions, and even though he had a repogle to take them all out, sometimes it got clotted, and then his secretions would stay on the back of his throat and this would cause him to brady. The brady's were scary; one night he had 46. I remember that my husband was travelling at that time, and all I could do was call him and cry, thankfully my mom was always by my side, and she always had the right words to keep me going!!!!
We spent the baby's first Thanksgiving at the hospital, and on this day we met Jorge's first primary nurse . . . . . Mariamma!!!!!
Even though scary,the first month was not so bad. It was filled with tears of joy and sorrow and lots of prayer.

Our Story

Jorge and I met, it was love at first site . . . after a month of dating we got engaged and a few months later we got married. Because of our hectic life styles and constant travelling we decided to wait before expanding our family. After 2 1/2 years we decided to try, and then one day it just happened we were pregnant. This is when our journey began!!!!

My pregnancy was troublesome. At our first appointment, we were told I had a fibroid. Basically what the doctor said was that I had a 50% chance of miscarrying. We were devastated. I made it to 12 weeks and the pregnancy was still viable, so of course we went for a routine checkup. Once again it was bad news. I had a low placenta and was at risk of miscarriage. I was placed on complete bed rest, but we beat the odds and made it to our 20 week appointment. This time it was amazing. We discovered it was a boy and decided to name him Jorge Alfonso. Hi is named after his great grandfathers, his grandfather and his father. On my side of the family he is Jorge VI and on his dad's side he is Jorge IV. Anyways as my pregnancy continued everything seemed to go fine. We were planning a trip with Jorge's family, and because of the placenta issues I decided to get a checkup to make sure the plane ride would not affect the pregnancy. Once again bad news . . .. this time the baby was not showing a stomach bubble. The doctor did not seem concerned so we decided to go on our trip, and had a blast!!!! When we arrived back home, we went for my 26 week appointment, and this time we were really in trouble. I was told I had an abnormal umbilical cord and on top of this there was no stomach bubble, and his right kidney looked bigger then the left one. Doctors were not happy, and we were given the option of getting an abortion. This was absolutely scary. Our doctor advised us to get an amniocentesis; he said it would help the doctors to know what to do when he was born, and that it would benefit our little one. Sure enough at six months into pregnancy I got it done, and the wait for the results was the worst experience of our lives. We finally received the call, and discovered that his chromosomes were normal, our baby was going to be fine!!!!!!!. Even though we knew there were complications we were happy because every problem he had could be fixed. Then once again bad news struck us, Jorge only had one kidney, he was missing the left one. We were told he could live a normal life with one kidney; all he needed to do was take good care of it. We were shocked, but yet again happy, we knew we had been blessed with a miracle baby. Jorge was born on November 1, 2009. He arrived 9 weeks early. This is when our story begins!!!!!!!!!