What is wrong????

It's been 4 days since we were in the Emergency Room. Jorge is feeling better, but something is just not right. He is feeling fine, playing and smiling, and even eats fine, but then as he sleeps, he will wake up and just scream, and he is also crying a lot which is just not like him.

We have been feeding him half pedialite, and half formula, and he has been tolerating it good, but now he is constipated, and this is just not normal . . the baby stools very often. We spoke with his surgeon, and he told us that on Friday, as he is doing a dilation, he will scope his stomach to see if everything is fine, until then all we can do is just wait.

The good news is that he has improved in his development. He still cannot lift his head, but he is now reaching for toys, and also putting them as well as his hands in his mouth. He is starting to talk (he is very good at complaining), and sometimes he giggles. He smiles a lot more, and finally realized that he has a mom and a dad, if we talk he will look for us ( I thought this moment was never going to come).

We got his passport taken care off. He smiled for the picture. It was hard to get the picture, because my arms or hands could not show. His eyes could not be closed, and the background had to be white. It was a challenge since he still does not sit on his own, but we took his bumbo seat, placed it on a stool, sat him on it, and we took his picture, and it came out perfect!!!!!! As always he behaved very well.

He has been doing really good, just a few bumps here and there, but we know that soon it will all be back to normal. Enjoy the pics!!!!

Just a Scare!!

Jorge has been acting funny for the past 3 days!!!He has been crying after feeds, and then yesterday he drank a 3 ounce bottle in just 10 minutes. After this bottle we were just not able to put anything in his mouth, not even the pacifier which he loves. After this we tried feeding through the g tube, but he would just cry through the feed and right after. We tried skipping a meal, and allowing his stomach to rest, but after 8 hours of no food he still had a residual. We did not give him his late night feed, and in the morning tried again, once again all he did was cry. He was feeling fine, was playful, and smiling until feeds started. We were just scared he might have taken his g tube out or something so we decided to take him to the emergency room.

Once at the Hospital we realized he had blisters in his mouth, this could explain why he did not want to eat. We also learned that his g tube was fine, and within a few hours we were sent back home. We were told to give him food over a larger amount of time, and so we did, but again he cried and cried. I called the ER and were told that if I brought him in, he would be hospitalized. The thought just paralyzed me. So we called his pediatrician, and she told us that it seemed like a stomach bug, to stop milk, and give him pedialite.

We gave him pedialite over an hour, and so far he has tolerated it fine. We will do this every three hours until tomorrow, and then take him to see his doctor, hopefully we will be able to figure out what his problem is, end it, and go back to normal.

I will keep you posted if anything new comes up. Good night to all!!!!

Bottle- feeding is just not my thing!!!!!

These past two weeks have been a bit crazy. As always we had to go to the hospital. Jorge got another dilation, and we have been told that we are no longer going to wait until he strictures. Every two weeks he will get dilated. This should help in the process. We were very happy, because after removing his ET tube, while he was recovering he kept on stating 100%. For a baby that was in the NICU for almost five months, and that was diagnosed with broncheo-tracheo malacia, I find this to be great!!!!!!

On the same day the baby had the procedure we had family visiting. My husband's brother and his girlfriend came to see us!!!! They could not believe how big this kid is!!!!! He is huge, everyday it seems as if he gains more and more weight and grows more and more cms!!!!! Jorge is now using 6-9 months baby clothes, and every time we check with the doctor, he is in the 95th percentile for his height. Hi measures 67.5 cms. On Sunday, we also had a friend come and meet the baby, she too was amazed to see how big he is!!!!!

We had a follow up appointment with his nephrologists, and his pulmonary doctors. Pulmonary said he looked great, and that we could follow up in 6 months, nephrology was a different story. Jorge has had some issues with his blood pressure since he was very tiny, so they need to keep an eye on that. While the nurse was taking his blood pressure, Jorge decided he wanted to kick and move, and cry, so the first time it was good, yet the next 3 times it went up, so even when the first one was ok, doctors don’t trust the machine that much, and told me that in a month when we went again, if it was still high he will probably get medicated for it. They gave good news too, I was told that Jorge was not going to be able to play contact sports, and that he would need a special diet to take good care of his kidney. This day I was told he could play any sport he wanted, and that he could eat whatever he liked. I guess in a way it was kind of a relieve, because I don’t want him not do things because of my fears and worries, and then when telling a kid not to do something because of a medical condition to me it sounds like trouble to come, so I really liked what I heard.

We have also been planning to go take Jorge to get his passport. I am so excited. My husband and myself are travelers, and since I was like 6 months pregnant I have not gotten on a plane, so I really miss that. I am a bit nervous about flights with the baby, but cant wait to go back home at least for a few days. I'll post his first passport pictures as soon as I have them.

ECI finally came home to do Jorge's assessment, we were told that he is only one to two months behind, which is not bad. He has low muscle tone, and that this may be the cause for which he will not lift his head. He will only have therapy twice a month, and it will be my job to do whatever exercises I am taught. I am really anxoius to begin so he can start catching up!!

Jorge is now taking three ounces of milk by mouth. We were feeding every three hours. It takes me one hour to give him his bottle, half an hour to give him the rest of the milk, and then one hour later I am bottle-feeding again. Jorge is huge, and heavy, and in order for him to eat I have to hold him, rock him, and then bounce around, and hold his bottle and his chin at the same time, by the time I am done with the bottle my arms hurt, and I am exhausted, and then within an hour I have to do it all over again, it seems like great exercise yet I have not lost a single pound . . . .go figure!!!!!! So we have decided to go every four hours, this gives me 2 hours to rest before I start again. Every time I feed him I fight with him like for 10 minutes just to let me put the bottle in his mouth, so I was talking to Tanya, one of Jorge's NICU nurses, and she told me that the same company that makes the pacifiers that he uses, makes bottles. We bought these bottles, and we tried them, he will suck on them like if they were his pacifier, but it takes me longer to feed him. This whole feeding thing is hard and annoying, I hope that someday it will payoff. I am hoping he is a good kid, as he gets older because he is quite a troublemaker as a baby!!!!!!!!!!!!!!

Jorge loves to go out in his stroller, in the mornings he cries a bit cause he gets tired of his crib, we have this thing that is designed for babies to be able to sleep on the bed (it's called a snuggle nest). I have used it, but sometimes he just does not like it, so in order for me to get a little more sleep I came up with a solution which is the stroller!!! He is quite a character. I will put him in his stroller, and set him right by my side, and he will sleep until either I wake him up, or until it is time to eat!!!! Jorge has a strong personality!!!!! Can't wait till he is a teenager =)!!!!!!!!!!

He is learning new tricks. He is getting better with the hair pulling, it is no longer just my hair, he pulls dads, moms, his uncles, aunties . . . . he is really good at it. He has discovered his hands, so he keeps on staring at them, and moving them. He holds his bottle, at least tries, and pulls it out of his mouth. He also loves to play with his tongue!!!!!! Everyday he does something different . . he is just super cute!!!! Yesterday, as I was doing some exercises the therapist taught me ( I have to put my finger in his mouth and rub his gums, and touch his cheeks so he will learn not to gag as much) I realized he has one tooth coming out. He also is lifting his head a little more, not yet how it should be, but I can see progress, it's hard for me to understand that he will do things at his own pace, but I am also learning to be patient, and this is also therapy for me!!!!!

So that’s it for now, I will post some pictures, hope you enjoy them!!!!!

Bye Bye Grandma!!!

This week was really busy for us. Jorge was out of town, and we were getting everything settled because my mom was getting ready to head back home!!!!
We did more fun stuff as well. We went out with my brother and his wife. We also had lunch with one of our friends from the NICU, Anette and her mom!! Everyone that sees the baby cannot believe he was in the NICU for so long!!!
I have been having a hard time telling people how old the baby is. Its hard to explain he is almost six months, but he was preemie, so I have decided to tell who ever asks that he is his adjusted age, so Jorge is 3 months!!!!!!
We also went out to have lunch with one of Jorge's nurses Mariamma, she took us to a great Indian restaurant. It was really nice to go to this place with her, because she was teaching us what each food was, and also how and when it should be eaten. Then she took us to get pampered, it was a very fun afternoon. We also had to go shopping, the baby does not mind, as long as he is in his stroller, he can just go anywhere.
We have been waiting for ECI to come and evaluate the baby, they were going to come on Friday, but we got cancelled. It makes me mad that we have to wait so long to get the baby started with his physical therapy, he really needs it, but it seems like I am the only one that thinks this way. I know everything has to happen at the right time, but I am so impatient, I always want things right away. By now, and with everything we went through with the baby, patience should be a strength well I guess its not happening for me!!!
The baby has been doing more things, he learned to pull my hair. I thought it was cute the first time, but after having him pull it repeatedly throughout the week, I no longer think its as funny!!!! He is starting to grab things, and he has learned how to get away with not drinking his bottle, he knows he will get fed through his g tube and fights with me. I try my hardest to be firm, and make him have it, but then he smiles at me, and that's it, he has me just there!! He can really do whatever he wants with us.
Yesterday, we took my mom to the airport. I have been living away from home for a while, and yet it felt as if I was leaving for the first time, and I was not even the one leaving. Can you believe that??? I guess my pregnancy hormones are still messing with me!!!!! Another thing he has managed to do is to kick the cable from the feeding bag and be able to unhook the g tube and spill the milk all over my couches!!! He is quite a troublemaker!!!!!
So now we are all alone, and it feels weird. The baby slept the entire day, and he was so mad at me because I kept waking him up to see if he wanted to play. My husband calls me Elmyra from Looney Tunes. LOL!!! Its just funny cause its kind of truth, I just want the baby to love me, and pay attention to me, and the baby just wants me to leave him alone.
Today we went to see our surgeon, and just as we were telling him that the baby was taking an ounce of milk by mouth per feed, and how happy we were because he had not yet restrictured, we come home and a few hours later he starts spitting again like if nothing is going down. . . Murphy's Law or what??????
Well for now this is it. I will post some pictures for you to see how big our baby boy is getting!!!! Enjoy!!!

Happy Easter!!!!

Today was an awesome day!!!! We spent our first holiday home as a family. Our day started a bit crazy because our church changed their mass schedule, so we had to run to get ready. I wanted a nice family picture, so decided to have Jorge, little Jorge and myself dress in caki pants and blue tops. We do not dress very casual, I would say that jeans and t-shirts are our thing, so I had to iron our clothes so we could look nice!!!!!!
The service was great, we had one of our favorite priests preach, he gathered all the children at the church and allowed them to be involved, it was very sweet. The baby is an angel, he behaved great, and did not cry at all!!! There were a lot of babies, and none of them cried. I was amazed, I guess they know they are at God's house, and that they must behave!!!! LOL!!!!!
So we left church and I decided I wanted pictures, so I made my mom take at least one hundred shots. The baby was tired, and dad was not happy at all!!! He actually told me he was not going to pose for any more pictures, and I tried my sweet talk, and every single trick I had, and the answer was always "no more PICTURES"!!!! It's OK because I got my family portrait, and for the first time we all look good!!!!!
We celebrated Easter twice this year!!! Yesterday we went to our dear friends the Ramirez's. They were super excited to see the baby so well. We had a great time, and had a great and delicous meal. Today we went to my brother's place. He had an Easter hunt for us and the baby, and also prepared a great meal. After we ate all the candy in the Easter eggs, then we went ahead and ate the good stuff!!!!!. It was nice because even the baby was at the table awake while we were all there.
Another amazing thing is that today the baby took his bottle without crying and fighting it, and drank 10 cc's . . . . that is just fantastic!!!!!Everyday our baby takes little steps forward, sooner than we know and expect he will catchup!!!
I hope you all had a very good Easter!!!!! Enjoy the pics!!!!

Hospital, Hospital, and more Hospital!!!!

This week was crazy. We had to go see Dr. Tsao, and since his office is at the same Hospital as the NICU, we went and visited our nurses!!!!!! Dr. Tsao checked his g-tube, and basically said he was doing great. We learned Jorge gained another pound. He is getting so heavy my arms hurt from holding him!!!!! We also asked Dr. Tsao to please get radiology to check his esophagus to make sure he did not re stricture, and to see if it was OK for him to start oral feeds.
During our stay at the hospital we became very good friends with our nurse Tanya, we had been wanting to go out with her and her husband for a while, so we finally were able to meet, and we had a blast. When she saw Jorge she could not believe how much he had grown just in a few days!!!!!!!!
I have always complained about how boring Houston is, and the fact that it is so hard to make friends in this city because everyone lives so far away, I guess this is one good reason to explain why God wanted us to stay at the Hospital so long, he wanted me to see that I could make lots of friends, and that Houston was not so bad after all.
On Thursday, the baby had an appointment with radiology. We learned that once again he had a stricture. Everyone was really nice to me, and kept treating me as if something horrible had happened, I guess we are so used to the fact that he strictures really fast, that for us its just kind of normal. Right after we left radiology, we had to run and see Dr. Tsao, he is so great, that he was able to get the baby scheduled for a dilation on the same day. We have no words to thank him!!!!!!!! The baby did great, but he had a bit of pain, and sleeping did not happen for us last night. We are just exhausted, it is going to take us sometime to get adjusted to the baby's schedule, but we will figure it out sooner than later!!!!!
Today we also had to go to the Hospital. Jorge got a modified barium swallow, they wanted to see if he could suck, breath and swallow without aspirating milk. Lets just say he barely passed. We got an OK to start feeding him orally, but just 5 cc per feed. We tried at home, and it went so bad, that I just want to fast forward time to when he is like 4 and no longer needs a bottle!!!!! Just kidding, but honestly it went bad!!! he did not latch, he would not swallow, and then he would scream so loud that I got a headache!!!!! I am hoping he was just tired and mad, and that at 9 o'clock, he is going to do better!!!!!
I am super excited because Jorge is going to celebrate his first holiday at home!!! We got him a cute outfit!!! My sister in law teases me because I get him bibs that say "my first . . .whatever holiday there is" and sure enough I have one that says my first Easter. Easter is going to be super fun, my brother is going to do an egg hunt for little Jorge, he is going to enjoy it so much!!!!
I am also kind of anxious because my husband has to go to Colombia, he is only leaving for 5 days. Five days might not seem like a lot, but for me it just feels like eternity, and I am sure we will miss him a lot. Thankfully my mom is here, and she will be helping me out.
Another great thing this week is that Jorge turned five months. Time is just flying, my little baby boy is growing so so fast, it is just unbelievable !!!!!!
So this is it for now, our week went great, and we are seeing lots of progress. I hope you all have a Happy Easter and enjoy with your families!!!!