First Playdate!!!

So we are home, and today we had visitors. My friend Annalyn came to see us. We were pregnancy buddies, and now our babies are friends. It was just so cute. She had a little girl, her name is AnaMaria. It was amazing to finally meet her, and to see them both interacting. Jorge did not like it at the beginning, he wanted all the attention for him, but after a while he started playing.

We sat them both on the floor ( AnaMaria is younger than him by 10 days, but she is really older because Jorge was two months early) and Jorge started imitating her, he sat for a while, he started trying to pull her hair band, they both touched each others feet. It was really cute, after a while of playing, they were both exhausted, and decided to crash on the couch . . . . it was so funny how they tangled each others feet. I think this is the best therapy for the baby . . . .can't wait until tomorrow for our next playdate, only this time two more friends will be coming over!!!!
Enjoy the pictures!!!

Our first Trip!!!

It's been a while since I have posted updates . . . I have been so busy. We got discharged form the hospital and were able to have him for mother's day!!! This day we went to church and then ate at one of our favorite restaurants. My in laws came to visit so it was nice to have them with us and celebrate together. It was great to spend such an important date as a family, and to be able to have him home with us.

The following week was all about therapy. We had to have back-to-back sessions because we needed to make up for the time lost at the hospital. Even though it was exhausting, it feels great when you see that it is working. The baby itself is a full time job; I don't know how do working moms do it. This week my sister also arrived. It felt great to have her home with us. We did so much stuff together, and for the first time in months we went out and had a girls night out. I really needed it, just to sit and talk about nothing important, and laugh . . . . It was amazing. We also went to my friend Tanya's home. They cooked a great meal for us. Jorge was not so good though. Tanya's mother in law was holding him, and he decided to poop. It was a blowout diaper, and it got all over her. OMG it was bad, I was so embarrassed, I wanted to cry, everyone was laughing, and then my sister decided to comment, " Thank God it was you", but she was so calm. She still wanted to hold the baby even after that, and the baby just loved the attention!!! We gave him lemon pie and whipped cream to see if that could do the trick, and man he almost ate our hands. That kid could not get enough. He has cravings for sweets just like his mom!!!

This week was hectic too. We had follow up doctor’s appointments. We had another dilation, but we got great news in regards to this. Jorge is going to get dilated every six weeks. That is a huge achievement. At the hospital we saw our surgeons. Dr. Adam came to visit and did his and Jorge's special cheer; my sister could not stop laughing. It goes something like " HIP HIP JORGE!!!!!!!!" Jorge is such a special kid, everyone loves him, and for me that is the greatest gift I could have ever been given. We also started speech therapy. So far he is doing well. He still isn't eating much, but we gave him cheese, and he loved it . . .so now we know he likes cheese, whipped cream, and lemon pie . . .. Really healthy huh??????

We also travelled back home. He had his first plane ride. He did not love it, but behaved really well. He cried every now and then, but just for a few seconds and then would fall back to sleep. It was a five-hour flight and he did just fine. The whole travelling was a challenge itself, and we were going nuts with all the stuff. We had milk, the feeding tube and pump, the stroller, the diaper bag, our computers, my bag . . . my goodness we had like 1 million carryons. But at the end we made it home just fine, and here we are at this moment. It is very exciting because Jorge got to see his room for the first time. He loved every part of it, the animals, the colors, and the huge crib. He feels great in his crib, we put him to sleep with his head towards the wall, and in the morning when we go see him, he is completely turned the other way. We are not rolling yet, but we are moving clockwise!!!!! Like our nurses would say, "its Jorge . . . everything is possible".

We are going to visit our families in Venezuela next week. I am super excited. Jorge is going to meet his great grandparents for the first time. I cannot believe we have come such a long way. We started out with no clue as of what to expect, and today we don't even remember most of our struggles. We just love our boy, and love our life, and love the fact that Jorge can participate in every part of it. We can keep on doing what we love to do, and the baby just adapts to all of it. We are very lucky to have him, our families and our friends . . .. Life is just great!!!!!

Here are some pictures. . Hope you enjoy them!!!!!

Going home!!

It seems we are going home!!! He has been doing better, but his feeding schedule is a mess. He is now feeding every three hours from 7 am to 7 pm, and continuously from 7 pm to 7 am. He no longer has diarrhea, yet still isn't at the same place we were before he got sick!!!!!
We changed his milk form Enfacare 22, to Enfamil AR, he seems to be tolerating it just fine. Lets hope this time we go home for good, and he can continue to grow a healthy and happy baby boy!!!!

The mystery child!!!

So we had our GI consult. I told them my concerns about him not tolerating his milk, and how every time he takes his medicine it gets worse. Doctors told me the medicine had nothing to do with it. I told Tanya our NICU nurse, and she researched the medicine, and of course it said that those who don't tolerate it have diarrhea, vomiting, sensitivity in the mouth, but that it is very unlikely that this will happen, well odds seem to always be our thing, Jorge is the 1% almost every time!!! We stopped the meds, and he started to do really good, but then we started to go up on his feeds, and guess what happened??? Once again his stool got loose and he had blowout that came out of the diaper and went from his rear end all the way to his neck . . . . Just gross, and that whole thing about when its your child its not as disgusting . . . . . . not true, its really bad, but you gotta do what you gotta do!!!!

Another great thing . . . . I sleep really really good, so I do not hear noises, or realize people are coming into the room. Well every time the surgeons come to round, I am sleeping, and today the doctor had to wake me up . . . I am still embarassed, and he tells me, I was here yesterday, just did not want to wake you up, but today I needed to update you . . . Why do these things always happen to me???????

All his tests came back negative, so they think its just a stomach bug, and it should clear out on its own, I think its the milk. Someone finally listened to me, so the nutriotionist came by and we will change his milk and see how this goes . . I will let you know as soon as soemthing happens!!!!!

We were missing a picture of Jorge with one of his night primary nurses, well she came today, and I was finally able to get it . . . . It was so nice to see her, we did not get to say good bye. It really feels great that everyone cares so much about the baby and us!!!! He loves the attention, and we do to!!!!!!

Still Here!!

It's been three days since we got admitted. He is doing fine, but his diarrhea will just not stop. We had a GI consult, and according to them, his stool looks better. It's not as loose and watery as it was before. Also surgery came by to tell us that so far everything came back negative. I guess it's just Jorge being Jorge. As they say no news is good news!!!

We are just waiting to see if something comes up, they did another stool culture, so maybe tonight we will have an answer, if not as soon as his diarrhea stops we will go home!!!!

We are doing better!!!

So far all cultures have come negative, we still need to wait until tomorrow to make sure its clear. He has been tolerating his feeds a little better. They are thinking it might be a stomach bug or maybe gastroenteritis. Tomorrow we will know for sure. He still is running a temperature, it comes and goes, but its never higher than 100.5, so until it does not his 101 they will not give him anything. He continues to have diarrhea, but its lighter than yesterday, and he started peeing again which is a relief.

As soon as we know some more we will let you know. We will stay at the hospital until his diarrhea is gone. We hope that by tomorrow we can go back home.

We are back!!!

This week has been tough. We came three times to the ER and yet we still don't know what is wrong with Jorge. He came in for his dilation, and they scoped his stomach, and they saw nothing. We went home, and while we were home the baby starting to poop blood. We thought that maybe it had to do with the whole scoping thing, so we waited to see. A few minutes later, it happened again but this time it was heavier, we got so scared that again we took him to the emergency room. He has diarrhea and blood in it. At the hospital, his surgeon came to see us, and explained to us that he swallowed blood during his dilation, and that it is normal for the body to react this way. He told us to give it 24 hours to clear, and that if not we needed to come back. We were discharged, and went home thinking that everything was fine.

While at home the blood in the stools went away, but the baby had 19 dirty diapers. The more pedialite we gave him the worst it got. We had a miserable night. The baby was so weak he would just make a squeak, he could not even cry, so again we ran to the ER. I guess doctors felt bad that we had already been there 2 times, told them something was off, and the response was, "your baby is fine, he is doing normal baby stuff, welcome to parenthood". He was very dehydrated, and feeling very sick. They had to start an IV, and of course his veins were no where to be found. Finally after 4 or 5 attempts, they were able to start fluids. They also did a CBC, and as always, it showed no signs of infection. The weird thing is, the baby is running a fever, he is not peeing, and still has diarrhea. This is the story of his life, something is up, but it just will not show.

We have been scared the entire day because of his lack of urine. The inserted a catheter all the way into his bladder, and nothing came out. They told me he was very very dehydrated. He is still not tolerating feeds, and he looks miserable. Doctors agreed with us, that something is wrong, and are trying to figure it out. In the mean time, we have been readmitted to the Hospital. This time we have a private room, with two couches for both of us to sleep in. It is really nice, and everyone has been very attentive. We are just exhausted, sleep deprived and anxious . . . . not a great combination!!!!!! We are hoping that something will come up in the urine, stool, and blood culture, so we can treat and go home and go back to normal!!!

Today is also a special day!!! Jorge turns 6 months. As always we took pictures, and will post as soon as I can download them. Jorge seems to like this place, every time we celebrate a month of age we are here!!!!! LOL he likes the attention I guess!!!! Last month he had a dilation, and now he is sick!!!!! Well its Jorge's way or the highway . . . .we just need to get used to that!!!!