C.

C. was born at 24 weeks and 4 days in New Jersey. I was then a second-grade teacher and hubby was working in South Jersey. Sometimes he worked from home and the day C. was born, it just so happened that he was home. I remember the contractions starting Thursday or Friday of the previous week, right after an upsetting situation that had occurred at work. They were very light at first and I did not become alarmed until Friday night when the pain became increasingly unbearable. Hubby urged me to call the doctor on Saturday morning but something was going on with shift change at the answering service and I was put on hold for so long that I just hung up. We were supposed to go to New York that weekend so we went. I was in pain the entire time I was there but had no idea that I was in pre-labor. One of my colleagues at work had reassured me on Friday saying that what I was feeling were Braxton-Hicks contractions and so I left that alone until Sunday morning when I just could not take it anymore. I finally got through to an on-call doctor who told me to  get into a bathtub with Epsom salt to ease up the contractions.  I thought that was ridiculous so I did not do it. There was no way I could sit quietly while my body was being racked by what felt like rings of fire. Huh huh.. So we went back home hubby and I, hubby clearly worried. I was tolerating the pain as best as I could but by Monday morning, wasn't feeling much better. Hubby pleaded with me not to go to work but I did not listen. I was supposed to attend a workshop that day but I did not even make it through that. I was doubled up in pain and would have stayed there if one worried co-worker had not decided to take me home. She drove my car and my husband brought her back to work. Things happened pretty fast after that. I went to the doctor who told me she wanted me to go to a high-risk women center and that's where they gave us the news that I was actually in labor. The doctor who examined me called my obgyn who instructed me to go the maternity ward of the hospital. At this point I wasn't really sure I understood what was happening. I remember telling my husband to stop by a Taco Bell ( I had Taco Bell cravings all throughout my pregnancy) because I figured I was going to be at the hospital for a while and did not want to go there hungry. It never crossed my mind that I would be giving birth that day and so we went and just like that, the contractions increased in frequency.  As soon as I got there, I was admitted and hooked up to monitors. Nurses were inciting me to stay calm and not to push, my obgyn was there, monitoring me and the baby and suddenly, my son's leg broke through the sac.  They had to take him out. I was screaming for them to take him out anyway and my husband sort of became numb(my poor hubby). They took me out and I didnt' see him until after C was born. I remember getting an epidural; I remember hearing my son cry and then they took him to the NICU. Before I gave birth, a group of neonatalogists came to talk to hubby and I asking us if we wanted them to resuscitate the baby if he came out not breathing and we said yes. We figured it was not up to them but to God whether he lived or died so we went for resuscitation. And so C was born weighing 1lb 9oz and, measuring 13 inches long. He spent eight(8) months in the NICU and,  one (1) month in a Florida PICU. Altogether, C spent the first nine(9) months of his life in a hospital and did not even get to see his baby room in New Jersey. When we moved from New Jersey to Florida, he was still in the NICU and traveled on a hospital plane with doctors and nurses to Florida where he was admitted to a PICU. I have to say though, that by that time, C was stable enough to leave the hospital and before our move was finalized, the NICU doctors were already trying to talk us into moving him to a specialized children's home where they took care of kids who were medically fragile. C. was medically fragile because he was on a ventilator, needed oxygen and had a trach. But we did not want that. Hubby and I categorically refused to move him to that recovery house and were gearing up for a fight when this move came about. So the time he spent in the PICU was really to transition him to a home vent which was a smaller, portable vent and monitor his progress on it. The PICU doctors tried to convince us to get him a G-tube but we refused since he was able to eat by mouth and that, to me was the best decision we ever took as C's parents. Things have been rocky in the years that followed but C has made some great progress. He stopped using the ventilator at sixteen (16) months, got off oxygen at about the same time and when he was two and a half, underwent trach reconstruction for a collapsed trachea. That was the most important of all of his surgeries and he'd already had two before that: a pda ligation and a tracheotomy.  C started talking right before starting kindergarten. Of course, his speech is delayed, some sounds are unclear and he does have serious language issues but he talks. He is language impaired, which essentially means that he does not always understands everything that people say to him the way he should but he does talk. The best way to communicate with him is by using plain, direct language and if needed, to use visual cues as well but that's a giant leap forward.  He reads, too. Not the way he should but a lot better than I expected. than everyone expected. He loves to watch TV, way too much and yes, he was diagnosed with PDD when he was six years old. What does he do mostly that's symptomatic of PDD: He perseveres on objects, ideas or activities and when he wants something, will ask the same question until he receives an answer. He's mildly autistic because, though he is socially awkward, he does seek the company of other kids, wants to play and interact with them and engages in their games occasionally.  I think, and so does my husband, that his communication impairment holds C back a lot of the times and keeps him from trying too hard to interact with other kids out of fear of being rejected but, we're working on that. He's getting a lot of therapy and we're hoping that this will help him overcome some of his challenges. Time  will tell.

Cincinnati

We go to Cincinnati once a year or once every two years as needed.  Most of the times it's just C and I. When things are more serious, like when C was having major surgery in 2005, my husband comes, too. He may come with us, leave to go back to work then come back to take us home.  This year it was just the two of us again. My son is such a trooper I have to say.  He goes there all excited about getting on a plane, waits stoically to be seen by the doctors, goes through a bit of anxiety and manages to remain calm all the times in between. Sometimes, I wish he could tell me how he feels about all of this. He's been going to Cincinnati since he was two and half years old.  He was probably too young to remember what happened that far back, which is a good thing since the worst happened back then, but he went back when he was three, four, five and six years old. Right at six, they(the doctors) told us that we could wait two years before coming back and we did.  Luckily, nothing happened during that time to make us go earlier and so, this past Sunday, C and I boarded a plane and flew to Cincinnati to go see the doctors.  I don't like going to Cincinnati.  I don't know anyone there.  Well, I know some of the moms I met when C and I stayed at the Ronald McDonald's House for three months but we didn't keep in touch so bottom line: I don't know anyone there.  When I go to Cincinnati, the hospital is the friendliest place I can find.  There, they know my son is a patient.  They know what we go through, the anxiety of it all and they really try to help us out anyway they can.  There's a Family Resource Room where I go to kill time while waiting.  Sometimes I go there with C but there are times when I go just to "breathe" (pardon the pun) and see other people, get on line or, just to get off the surgery or main floor. I didn't go this time around. I probably should have but I just didn't. Now, the hospital gift shop, I always visit. C loves it there. He always, always finds something he wants there and, though I say no to many of his requests, I usually end up buying him one thing. Why not? He's there by himself, away from home, away from his familiar environment so why not? And the other place we usually visit is the cafeteria. I like it there, too. Not so much because of their hot food, nothing spectacular there really but because of their soup, salad and cold product compartment. This time, I went for their pita chips and hummus but C could not eat most of the things there so he only had chocolate milk. Still, it's somewhere to go and just sit for a few minutes. The Guest Services Department is really good, too. They actually offer rides to the neighboring drugstores and the drivers do many runs throughout the day. I needed to go to a Walgreens or CVS after one of C's appointments this week and, they were able to arrange for one of their drivers to take us there, wait for us and bring us back to the hospital. They also offer discounted tickets to family attractions in the area but I've never used those. There's just no time for that when we go to Cincinnati. The only time we were in Cincinnati long enough for something like that to happen, C was hospitalized for two weeks straight then had to stay put at the Ronald McDonald House and go to the hospital for checkups.  I must say, the Ronald McDonald House is the best option by far for families with kids who have to be there for a long time.  They use a sliding scale to charge for the room so that's great for the finances.  They have two playrooms, a nice playground, volunteers who cook dinner for the guests every evening and offer different kinds of activities not only for the kids but for their parents, too.  I was able to stay there twice or was it three times out of all the times I had to bring C to Cincinnati.  I was very grateful for their hospitality while I was there and being just across the street from the hospital really helped, too. The only thing is that they have a looooong waiting list and families have no guarantee that they will get a room there. When you call to tell them that you will be in town on such and such date, they recommend you book a room at a hotel, ask for your phone number and contact you if, and only if a room frees up. I think they go by priority: The neediest families are always given priority based on their child's medical  condition and treatment needs. When C needed to stay in Cincinnati for those three months, they considered us a priority so we got a room pretty fast. The other two times, we were just lucky. And thankful.  I've been going to Cincinnati long enough to have stayed at a hotel that closed two years ago. It was a historical hotel and it had become our regular home away from home whenever we were in town and could not stay at the Ronald McDonald House.  Funny to think that it no longer exists... We've also stayed at a hotel that was located in the heart of downtown Cincinnati and, at another one that was right across the river in Kentucky.  That was the same one we stayed at this time.  On our last trip two years ago, C and I went to a really nice shopping mall in Covington, Kentucky. That was one of the nicest things we ever did there. They have an aquarium, some shops, a movie theater and C and I walked around before having lunch at one of the restaurants inside the mall.  It was pretty nice and, it provided a welcome distraction from the real reason we were there. That last time,  C's aunt also came to visit us with her family.  It was nice to see some familiar faces and we all sat together and had lunch at the hotels' restaurant. She didn't come this time around; she couldn't but it was just as well because we had no gap long enough in between our appointments that would have allowed us to spend more than one hour together. I didn't want her to drive two hours or more just to see us for one hour, especially since we just saw each other back home when she came to my house for C's First Communion. We're home now and assuming all goes well, we won't be going back to Cincinnati for another two years.

Cincinnati

Cincinnati

Cincinnati

We go to Cincinnati once a year or once every two years as needed.  Most of the times it's just C and I. When things are more serious, like when C was having major surgery in 2005, my husband comes, too. He may come with us, leave to go back to work then come back just to be there.  This year it was just the two of us again. My son is such a trooper I have to say.  He goes there all excited about getting on a plane, waits stoically to be seen by the doctors, goes through a bit of anxiety and manages to remain calm all the times in between. Sometimes, I wish he could tell me how he's feeling about all of this. He's been going since he was two and half. He was probably too young to remember what happened that far back, which is a good thing since the worst happened back then, but he went back when he was three, four, five and six years old. Right at six, they(the doctors) told us that we could wait two years before coming back and we did.  Luckily, nothing happened during that time to make us go earlier and so, this past Sunday, C and I boarded a plane and flew to Cincinnati to go see the doctors.  I don't like going to Cincinnati. I don't know anyone there. Well, I know some of the moms I met when C and I stayed at the Ronald McDonald's House for three months but we didn't keep in touch so bottom line: I don't know anyone there. When I go to Cincinnati, the hospital is the friendliest place I can find. There, they know my son is a patient.  They know what we go through, the anxiety of it all and they really try to help us out anyway they can.  There's a family resource room where I go sometimes just to kill time while waiting.  Sometimes I go there with C but there are times when I just go to "breathe" and see other people, get on line or, just to be off the surgery or main floor. I didn't go this time around. I probably should have but I just didn't. Now, the hospital gift shop, I always visit. C loves it there. He always, always finds something he wants there and, though I say no to many of his requests, I usually end up buying him one thing. Why not? He's there by himself, away from home, away from his familiar environment so why not? And the other place we usually visit is the cafeteria. I like it there, too. Not so much because of their hot food, nothing spectacular there really but because of their soup, salad and cold product compartment. This time, I went for their pita chips and hummus but C could not eat most of the things there so he only had chocolate milk. Still, it's somewhere to go and just sit for a few minutes. The Guest Services Department is really good, too. They actually offer rides to the neighboring drugstores and the drivers do many runs throughout the day. I needed to go to a Walgreens or CVS this time around and they were able to arrange for one of their drivers to take me there, wait for me and bring me back to the hospital. They also offer discounted tickets to family attractions in the area but I've never used those. There's just no time for that when we go to Cincinnati. The only time we were in Cincinnati long enough for something like that to happen, C was hospitalized for two weeks straight then had to stay put at the Ronald McDonald House and go to the hospital for checkups.  I must say, the Ronald McDonald House is the best option by far for families with kids who have to be there for a long time.  They have two playrooms, a nice playground and provide many different kinds of activities for the kids themselves and for their families throughout the week.  I was able to stay there twice or was it three times out of all the times I had to bring C to Cincinnati. It also helps in the finance department since they use a sliding scale to charge for the room. I was very grateful for their hospitality while I was there and being just across the street from the hospital really helped, too. The only thing is that they have a looooong waiting list and families have no guarantee that they will get a room there. When you call to tell them that you will be in town on such and such date, they ask that you book a room at a hotel, ask for your phone number and contact you if, and only if a room frees up. I think they go by priority: The neediest families are always given priority based on their child's medical  condition and treatment needs. When C needed to stay in Cincinnati for those three months, they considered us a priority so we got a room pretty fast. The other two times, we were just lucky. And thankful.  I've been going to Cincinnati long enough to have stayed at a hotel that closed two years ago. It was a historical hotel and it had become our regular home away from home whenever we were in town and were not able to stay at the Ronald McDonald House.  Funny to think that it no longer exists... We've also stayed at a hotel that was located in the heart of downtown Cincinnati and, at another one that was right across the river in Kentucky.  That was the same one we stayed at this time.  Last time I was there, I guess that would be two years ago, C and I went to a really nice shopping mall in Covington, Kentucky. That was one of the nicest thing I ever did there. They have an aquarium, some shops, a movie theater and C and I had lunch at one of the restaurants located inside the mall.  It was pretty nice and, it provided a welcome distraction from the real reason we were there. That last time,  C's aunt also came to visit us with her family.  It was nice to see some familiar faces and we all sat together and had lunch at the hotels' restaurant. She didn't come this time around; she couldn't but it was just as well because we had no gap long enough in between our appointments that would have allowed us to spend more than one hour together. I didn't want her to drive two hours or more just to see us for one hour, especially since we just saw each other back home when she came to my house for C's First Communion. We're home now and assuming all goes well, we won't be going back to Cincinnati for another two years.  And that's exactly what happened.