JJ's Incredible Journey

surgery update....

2009-11-11T18:17:00.000-08:00

JJ had surgery this morning at 7:40 a.m. it lasted 2 and a half hours, longer than we had anticipated because of the enormity of his hernias... They had to seperate all of the blood vessels, the vas defryns and what not all very carefully so it took awhile... They also were able to go ahead and circumcise him. Normally we would have done it at birth but they would not do it then because of the risk of infection.. SO, he is NOT happy about that part.. He did GREAT as far as the oxygen support goes.. He was NOT happy to even be back in Seattle, as soon as we landed yesterday he said "i HATE Seattle." I can't really blame him, while it is a wonderful place, all he has known of Seattle is the pain of surgeries... We will be here until next wednesday so maybe he will feel better about the area by then...
he is resting right now but is in alot of pain so please continue to pray for his speedy recovery.. I will post a better/longer update later this eve or tomorrow for those of you that are following...
AS I AM SO TIRED.. i am going to take a nap while he is asleep...
THANK YOU ALL......

Update....

2009-10-31T21:46:00.000-07:00

First of all I want to say THANK YOU!! To everyone who have been so loving towards our family. For those of you who have donated it means SOOOO much.. To those of you who have prayed for him, passed along his blog info to friends and family, told his story to someone else, sent kind words and thoughts our way, and even those who have just thought about him.. Thank you for caring.. for loving my son like your own.. for giving to people you don't even know and may never ever meet. My heart is filled with grattitude and love and words cannot express how much you all mean to our family.. You are our Angels on earth...
Our local newspaper will be running a news story about JJ and his incredible story in tomorrows newspaper. I know alot of you are probably thinking, well why didn't you do that a LONG time ago.. I guess the truth is, it's hard to ask for help... I don't feel like our family has had it so bad, I don't look at our story as a burden or struggle even though we have technically "struggled" for the past three years, We have JJ.. we have our miracle, and there are people out there that deal with tougher times then what we are every single day!! The longer you live with a situation that is dificult and trying on a daily basis, the more it just becomes "normal" i suppose... a few months back we were actually contacted by a television company in England about making a documentary on JJ's story for Discovery Health Channel.. It would have been GREAT only because I wish that there was more exposure for Omphaloceles, that people knew more about them and that the options and choices that people have for treatment were more well known. ALOT of babies born like JJ do not survive, either to term, or after birth, and alot of couples opt to terminate the pregnancy. I am SO happy that we wouldnt consider that as an option and that things have worked out for us the way they have, I know several other mothers who have had or been pregnant with "O" babies that werent as fortunate as we have been, my heart ACHES for those families... SO, if our struggle financially is the most difficult thing that we deal with then I can handle that!
JJ and this experience have taught me SO much about unconditional love and sacrifice.. and about the true GOODNESS in people..
due to the story that is running in the paper, I have set up a fund at Bank Of America for JJ for people that wish to donate that way also.... it is VERY closely monitored so any contributions that go there will go directly to paying medical bills. They will not allow us however to use any of it for expenses related to any of the rest of it. For travel costs, or anything else. So, contributions made here on the blog will go towards those things, well that and to buy JJ a new winter coat. If we have ANYTHING EXTRA it will go toward the three years of past medical expenses that we still are trying to pay from the high risk pregnancy, all the specialists, his brith, the NICU stay etc etc... and towards future medical expenses...
I hope that everyone knows that this really does go towards a good cause.. I can't think of a better cause than JJ.. if you knew how special he really is... We rent a small 2 bedroom house for our family of four, we own only one car so JJ and I walk his sister Emma to kindergarten every day.. we have stretched things as far as we can for as long as we can and we just adapt and adjust, but I cannot tell you the relief and peace that I have felt this past few days knowing that there are other people that really care and that are willing to help, that we WILL make it to this next surgery, and that maybe JJ can start living a normal life, without pain on a daily basis....
All of you that give, are the ones who make this possible.. because while we do have some insurance, it only covers some of the expenses and there are so many other expenses that go along with it, plus whatever insurance won't pay.....
I also want everyone to know, that if you are interested in watches and bows i will gladly still make and send those.. I do however need people to let me know.. you can email me at amyswearingen@cableone.net and i will get them out as quickly as I possibly can.. Again, thank you for your kindness and love and support!
p.s. for those of you who do want the watches and bows please email me your addresses to send them to, to my email.

running out of time....

2009-10-24T11:54:00.000-07:00

I wanted to add some new pics of some watches and bows to help try to drum up some interest in donating for JJ's trip.. I only have til the end of the month to come up with what I need and that is the end of this coming week.. otherwise i have to cancel the surgery until next year.. :( anyway please pass along the info to everyone that you know in hopes that people can give ANY amount.. every penny adds up... thank you all and please continue to keep him in your prayers.. right now he and his sister BOTH have h1n1 .. so far he has been able to stay out of the hospital with it so keep your fingers crossed...

love to you all....

HELLLLPPPPP

2009-10-22T21:50:00.000-07:00

I have had a few people with questions as to what this next surgery is for JJ and why.. so i wanted to clarify... When JJ had his last surgery they had hoped to be able to put his liver back inside his body and also fix his bilateral inguinal hernias at the same time.. They werent able to do that so we had to schedule another surgery.. we had hoped that it would only be the one since it was so costly but of course since it was a high risk for JJ we were ok with waiting.. they were able to put JJ's liver inside his body but not fix the hernias.. the hernias mean that he has a hole in the abdominal wall that causes his intestines to fall out into his scrotum, making it about the size of a small grapefruit.. as you can imagine, this is very painful for him, but he has never known any other way.. we have to get it fixed because it is causing the testies to go up into his abdomen which they say could cause fertility problems down the line.. not only that but most importantly it is causing him alot of pain.. he has lived his short three years knowing no different than constant pain and discomfort.. Since the surgery his liver is still protruding alot in his belly since they couldnt close the muscle wall all the way around it.. every day he has constant tummy aches and has not been able to gain ANY weight since the surgery.. (not like he could before) but now they need to check things out and decide if maybe he needs a permanent feeding tube surgically placed.. most importantly we want to figure out how to get him out of pain.. none of this was planned for, and i hated the first time to have to ask anyone for help.. we couldnt be in a worse position in our life right now to have all of this go on.. but you do what you gotta do i suppose.. that being said,... i have about a week to figure it all out and try to find a way to get this done.. if not, then i will have to cancel the surgery and wait until next year to do it after the flu season is over.. all i want is to get him out of pain.. there is nothing worse for a parent then to know that your child is in pain or discomfort and not be able to help "fix it".. we are grasping at straws here, i am still trying to offer watches or bows to anyone who can donate, we are trying to sell off anything we have that anyone else might want that we can live without.. for example, i have a video camera that i could sell and a camera lens that is a zoom lens for a dslr camera as well as an external flash.. if anyone is interested in any of that????? please let me know.. we also have a small aluminum fishing boat on a trailer that we will sell if anyone is interested, but it is here in twin falls so, it would have to be someone not too far off.. I still will continue to do the bows and watches if anyone wants to order.. i have alot of clothes in great condition that Emma has outgrown like in the 3t-4t range if anyone is interested.. lots of princess stuff... we already only have one car for our family, but if it were an option i would sell that too... anyway, Please if there is anyone out there left that isnt sick to death of hearing out story or who knows of anyone in a position to help.. or even has a dollar to spare.. every bit helps.. please please refer them to JJ's site... donations can be made at the bottom of the page at the donate now button.. you dont have to have a paypal account to donate and every penny adds up.. once we make it through this step in our lives i just cannot wait to move forward! I am sorry that i have been such a pain.. , Please keep JJ in your thoughts and prayers.. and pray that he doesnt get this horrible h1n1 severely right before he is suppose to have surgery, that everyone else seems to have.. Thank you all for listening..
love to you all!

hope....

2009-10-16T00:09:00.000-07:00

As i sit here tonight or i guess i should say tomorrow since it is 1 am, can't sleep because well I guess because stress just does that to you.. I can't help but feel greatful for my beautiful children asleep in their beds, my other children who have moved to live with their dad because the stress here is just "too much" whom I miss with every beat of my heart... my dear husband, who never talks about what's on his mind or about the issues we deal with because he thinks that is his way of being "strong" for us... for my family who all live far away and Johns too who send support and love the best ways they can from afar... of all my dear friends close and far and those i havent seen in decades... for strangers, who are touched by my beautiful angel JJ who think of him often and can just feel that he is something special...
I am touched by everyone that is apart of my life be it a big or small role that you play, You are all forever in my heart.. As a mother I will do ANYTHING for my child... for any of my children... there is nothing too degrading, even begging strangers and family and friends to give some of what they have, to help my child... so, i ask again.. PLEASE continue to think of JJ... pray for him,.. send good karma,.. whatever it is you believe in... Please pray for me that i will have the strength to keep doing this, and that I can somehow come up with what we need to get him to where he needs to go... that i can get some sleep!!!
my hope is, that the people out there that are in a better position than i am right now.. will give... to my special little angel.. big or small it all adds up.. we are a lONG way from where we need to be right now, so please pray for my miracle!!
pass along his blog to everyone you know... anyone can donate any amount.. even without a paypal account.. right at the bottom of this blog! Thank you.. and love to all of you..

Getting closer...

2009-10-11T12:15:00.000-07:00

I am running out of time to raise funds for the next surgery trip.. I have been busy making bows and watches in hopes that it might interest some folks... at this point anyone who donates over 30.00 will receive a complete watch and anyone 10.00 to 20.00 a deluxe hairbow and then between 20 and 30 we will work something out. PLEASE PLEASE PLEASE pass this to everyone that you know.. I know this sounds so desperate but I am at a place now where if I dont come up with something soon then we will have to cancel the surgery until next year because of the cold,rsv, and flu season they dont want him in the hospital after November if it can be avoided and I hate to have JJ continue to be in pain just because we cannot come up with the funds... and i have to make our travel arrangements SOON in order to go.. as it is Dad and Emma will both stay here this time so it will be just JJ and I.

Please get the word out.. every little bit helps more than you realize... anyone that can skip a lunch out, or a new outfit, or anything of that nature in order to donate to JJ will be forever blessed and i do believe in Karma... thank you all for your love and support...

Calling all Angels....

2009-10-07T10:17:00.000-07:00

I know it has been awhile since my last update and I apologize for that.. I have had alot of people inquire about JJ and how we all are and the truth is, I haven't updated in so long because I have just been sorta down in the dumps lately... I know we all get that way once in awhile, but for me it's hard to keep in touch or reach out to people when I feel like that. I hope you all know that I do appreciate the love and support from each one of you that have touched our lives.. It is now time for me to pull myself out of this rut and get going onto the next episode... (it feels like i just did all of this recently) but it's that time again.... JJ is scheduled to return to Seattle for another surgery on the 11th of November, and i swear it seems like de ja vu, trying to pull it all together again to get there. Since JJ had his surgery in July, he has had alot of ups and downs. He has had ALOT of tummy pain and aches, and has not gained ANY weight.. so now we are going back to decide if repairing the hernias will help with the tummy aches, or if it is because the liver being pushed back inside, is causing pressure on his stomach. In either case it is likely that they will have to insert a feeding tube surgically into his stomach through the outside of his belly. They were unable to do this in the past because the liver was in the way.. well since putting it back in, they just had to leave it where it was but push it inside, it is still on top of his stomach so the dr is somewhat perplexed as to what to do at this point. Since the surgery his liver also was suppose to relax into place and have less of a protrusion out of his belly but that hasnt happened either.. and where they made his belly button, after it got infected it scarred flat so now it pretty much just is like a flat circle scar, but that's ok.. (only JJ doesnt understand so he thinks that all of his tummy aches are because he got a new bellybutton) all of this on top of Emma going to kindergarten and bringing home EVERY germ known to man, JJ has been continually sick since July with either tummy aches, colds, throwing up, etc... so we dont get the chance to go out much other than to walk Emma to and from school twice a day. Now that the weather is getting yucky (we had our first snow storm on sunday and it snowed several inches that stuck on the ground... pretty early in the year for snow) but it also means we are out even less so that in itself is somewhat depressing..

HOWEVER, JJ is still a little trooper, and while i may get down in the dumps I am so proud of him and so greatful at how far he has come.. we do alot of little projects around the house, and i have alot of supplies from over the years, so I decided to put some of those to good use and have started making interchangeable beaded watches as well as headbands and hair bows.. I am going to try to sell some of these to raise money again to get us to Seattle for this next surgery. We don’t have much time but we had so many people that reached out to us last time and were there when we really needed it, I know that Christmas is approaching and that the economy is crappy, but any little bit helps so much and adds up.. so I ask again if any of you that have anything to spare, and are willing to give to our worthy cause (and boy is JJ worth it) please donate at the bottom of the page of JJ’s blog at http://www.teamhelpjj.blogspot.com , please email his site to everyone that you know, get the word out again.. and in return, i know it isnt much but to everyone that donates, i will put in a drawing for a raffle of either a watch face with two beaded watchbands of your choice, they are interchangeable and hook to the face with two lobster clasps on each end. OR a girls head band with two bows of your choice they are also interchangeable.. the bows hook to the woven headband with a lined alligator clip or can be worn alone. I have posted some samples of what I am talking about below..I will raffle off a few of each after we receive donations and then will contact winners to find out colors and sizes and which you would like.

ALSO, if you are interested in buying a custom watch, or headband, or bows, i will custom make them for you. you just tell me the colors you would like and i will make them especially for you.. I can do holiday colors, school colors, your favorite outfit colors etc etc. They will make GREAT gifts... Im not really sure on a set price that i am going to sell them for yet, but probably around 20 dollars a watch band and 10 dollars a face, and for the headbands 10 and 6 for the bows? I hope that sounds fair.. I am open and willing to any suggestions on pricing or anything like that.. like i said, i am hoping to go forward and do this on a more regular basis. ALL of these proceeds will go to JJ, his surgeries, and medical bills.. so if you want to donate a higher or lower amount but would still like a watch or headband, please just email me so we can discuss it because I want people to get something in return for their donations and right now this is the only thing i can think of that i have the supplies for.. and of course lastly, PLEASE PLEASE PLEASE... keep JJ in your thoughts and prayers.. He needs all the love and support that he can get! and so does our family... Thank you to all of you for your kindness, your love, support and thoughts.. you are our EVERYDAY ANGELS! we love you all... email me at amyswearingen@cableone.net

P.S. the pics of Emma are just to show you an example of how incredibly cute these headbands and bows are.. the bows can be worn alone, with the woven headband, or with other headbands like the corchet one she is wearing in the pic with JJ...

2009-08-22T14:57:00.001-07:00

Well, I dont know how many people (if any) actually follow this blog but it has been a little while since I have updated it...
That being said... we have been really busy the past couple weeks.. Emma our little girl starts kindergarten this coming Monday... I am so excited for her and so sad for me... I will however be happy for the time that I will get to spend one on one with JJ.
now on to JJ... about a week after we got home from Seattle his little belly button that they made for him started to seem red and irritated.. i took him to the Doctor who said that it looked ok... I continued to watch it and it just got worse and worse.. I took him back to the doctor the other day because it started to OOZE and was very painful for him.. and what to you know? it indeed was infected... they have tested it to see if it is staph or cellulitis or what and have put him on a broad spectrum antibiotic. He now HATES his new belly button.. I think he figures he was fine without it and that it hurst so why bother having it... poor guy! Basically what they did is used the hole where they inserted the scope to look up inside his body and cut four little triangles which they stitched down to the muscle underneath so they could make it look like a belly button.. so, there is a big hole in the middle of it, and a circular stitch around it that is scrunches it up a little... Anyway, he has felt pretty crappy... hopefully this antibiotic will help!
for any of you that i keep in contact with by cell, my phone broke the other day, so i am not ignoring you i promise.. i just can't afford to get it replaced right now... JJ's surgery was quite expensive, the whole trip was expensive and now we have to do it all over again in October to fix his hernias..... SO AGAIN... i want to thank all of you so much who have been able to donate towards JJ... Big or Small your donations mean so much and we could not have done any of this without you... We are now trying to raise funds for the next surgery and the trip so PLEASE if there is anyone left out there that is able to give ANY amount... PLEASE PLEASE refer them to this site.... it all adds up....
thank you again for keeping up with our story and for keeping our precious little boy in your thoughts and prayers.....

HOME at last.... ~ and a big Happy 3rd Birthday JJ!!

2009-08-01T10:21:00.000-07:00

So, now that I actually have time to breathe, I figured I should write an update....
After 5 days in the hospital JJ was discharged a week ago today, Last Saturday.... he was discharged only to the hotel which was about a block from the hospital and boy was he ever happy!! That is when the real fun began because JJ understands NO LIMITS! He seemed to think it would be okay to run around, climb off and on the bed try to bend over, push things etc... only after it was too late and he already attempted half of those things did he realize that he was SORE and that he needed to take it easy lol... My sister Jen had to go home friday before he was released so I didnt really get to spend a whole lot of time with them except for when she was up at the hospital (it was so nice that they came to support us and JJ and i love them VERY MUCH!). My younger sister Laura, my mom, and the kids all stayed until Monday which was AWESOME... i had not seen Laura in 2 years, and the last time they saw JJ he was a baby so it was nice to visit and spend time together.. It was also wonderful to have our older boys Dawson and Cody there to help keep JJ and Emma occupied... it really is difficult to be confined to a hotel room for days on end with two small children. The boys slept on our floor and I shared a bed with JJ and daddy with Emma, so i could be sure that nobody would roll over on JJ lol.. The kids had alot of fun swimming and we were able on Monday to get out for a few hours. We got a stroller that reclined and took the kids on the water taxi ( i couldnt believe the kids were free and it was only 3 dollars for me!!) Anyway we took the water taxi over to west Seattle, and then a free shuttle over to Alki beach where the kids could put their feet in the ocean... It was very nice!! We ate lunch and then back to the hotel after saying goodbye to everyone as they headed for home.... Then it was just John, Me, Emma and JJ... Seattle has a LOT of walking, so since JJ had to rest, recover, and get strong enough to go home, we spent alot of time in the hotel room just chilling out... or should i say just WAITING to go home... lol... the weather was at RECORD highs the entire time we were there... ugggggg FIGURES!... after a few more doctor checkups, we were cleared to take JJ to pick something that HE wanted to do before going home so of course he picked the ZOO on the HOTTEST day ever!.. 103 degrees... we caught a shuttle downtown and then a city bus to the zoo... it was our first time really on a city bus or trying to figure out what to take where as far as public transportation goes so that was interesting!.. the kids were lucky though because they got to be carried, and then pushed around the zoo... and let me tell you, the Seattle zoo clearly does not believe in looping exhibits around so that they all inner connect, you have to go off into one, where it becomes a dead end, then all the way back out past everything you saw, and into the next!! all 92 acres are this way!.. FINALLY on thursday after one last doctor appointment, Dr Hatch cleared us to GO HOME!!! yipppppeeeeeee...... we arrived home on Friday Evening and today (saturday) is JJ's 3rd birthday!! Boy has he come a LONG way over the past three years! we are so truley blessed!
We have to go back to Seattle the end of October or beginning of November to fix his bilateral inguinal hernias and then hopefully after that there will be NO MORE SURGERIES!!! one little guy shouldnt have to go through so much!! and boy was this trip EXPENSIVE!! we could not have done it without the support and donations from everyone!... now we have to prepare for the next, so please continue to pass around this blog so that we can continue to raise money for the next event...
and again THANK YOU THANK YOU THANK YOU... I cannot thank you all enough for the love and support!

from the Hospital....

2009-07-24T12:48:00.000-07:00

Okay so today is Friday... time for an update~ We are still in Swedish medical center in Seattle in the Pediatric specialty unit... we are on the 9th floor, and have a pretty decent view out the window of (see ahhh dole) as JJ calls it.. When we first got here our room was very small with a huge round pillar in it which made it even smaller so of course, me being the (quite, reserved person that i am NOT... ) I asked for a different room.. lol... yesterday only one day after surgery JJ went the entire day without ANY pain medicine... Have i said lately what a stud and how awesomely tough he is??? no vomitting after surgery either, so he started a regular diet yesterday afternoon.. he has ha a BILLION chocolate milkshakes and counting.. last night his belly hurt a little but it was because his intestines still arent working really well yet so hopefully that gets better as he starts getting more mobile.. We had a pretty uneventful night with JJ sleeping all the way through until 9 a.m. this morning.. its a little tougher for me as I sleep in the hospital bed with him at his request of course and with the nurses coming in, being little room, and making sure not to move too much so that it doesnt cause him any discomfort, sleep for me has been a little more difficult. This morning, JJ had pancakes in the shape of Mickey mouse, a chocolate shake AGAIN!! and only an oral dose of Tylenol with Codeine..

And that was because we had to get him up and moving today... that task is pretty painful and more difficult, as you can imagine... it hurts to sit up, it hurts to sit down, it hurts to stand, bend over, pretty much anything... his poor little abdomen muscles have never been together until they were formally introduced on Wednesday lol... pretty much its like there was just a big hole in the muscles and through that, the liver poked through... when they got in there, the top of the liver was attatched to the skin, and they did actually undo that, they pushed the liver back in where it needed to be, well not where ours is, but where it is in an omphalocele child, and then they pulled the muscles tight and stitched them up.. then the skin over that... so it is quite painful for him to do much.. However, with a little love, and lots of bubbles... i was able to get him up standing, and he walked ALL THE WAY DOWN THE HALL TO THE PLAYROOM!!! very slowly of course but you have to understand this is a HUGE success for him... He wanted to get to his big sister, (his bestest friend)... and his brothers who were waiting there for him... on the way back he was very tired though, so i gladly carried him the rest of the way... we have been very lucky to have the family support that we have, that were able to make the trip for us... my older sister Jen, Sam, and their two boys flew in late Monday night, My mom and younger sister Laura, her three kids all drove from New Mexico, picked up my older boys Dawson and Cody from SLC and drove them here... Johns parents drove up from Boise,... so JJ has had lots of love and support and visitors, balloons, stuffed animals etc.. and Emma has had kids to hang out and play with.. she even went to the space needle, and the pacific science center.. which was great because she was really stressed about all of this so it has been good to get her mind off of it all...

The doctors are just shocked at how well JJ has done, and how tough he is!... We are hoping to get discharged within the next few days, and then will have to stay in town a few days for post-op and to make sure it is ok for him to travel... he will not be able to DRIVE the 12 hour drive home so we will be flying.... Our expenses here have been high so we appreciate so much the financial support we have received, and appreciate so much any future help... we will be paying for all of this for awhile, and with flying, our tickets will be expensive since it is open ended at this point, its always more expensive if you cant do it in advance.... so, please continue to pass along the info for donations...

I just want to thank ALL OF YOU,. for the love, prayers, support, etc etc for our precious little boy... and for our family... it means more than you will ever know.. I know that the reason he is doing as well as he is, is because of all of the people out there that love and pray for him... this has been a difficult time in our lives, and having to come back again in a few months for another surgery will also be difficult.. and another EXPENSE... so we will continue to raise money for as long as we can... it needs to be done here his doctor says, because of his insides being re-arranged and in different spots than they should be it will be a more difficult hernia repair than a regular one would be...

here are a few pictures.... when you look at the pictures his surgeon had of him from birth it is UNBELIEVABLE how far he has come.. what a real miracle JJ really is, and we are so very lucky to have him with us....

Update on JJ

2009-07-22T21:17:00.000-07:00

I am writing this from my cell phone from the hospita l in Seattle so bear with me... we arrived in Seattle Monday afternoon, JJ was admitted to the hospital the next day. He had an IV placed and an NG tube put down his nose into his tummy. both were difficult tasks because he had a lot of scarring on his veins from previous ivs and his nose also had scar tissue from having so many ng tubes as a baby. it was pretty traumatizing for him but he tried to be brave.. they then administered a drug called "go lightly" which should be called something much worse as it is given as a bowel prep to completely clean out the system... in JJs case it took several hours to work and after throwing up a few times it finally started working around 3 am. he was very tired and uncomfortable. they also did chest xrays. I stayed in his bed with him and he continuously told me he wanted to go home and how mad he was at me that I brought him there.. talk about heartbreaking... we both finally fell asleep around 4 am and then at 7 am daddy arrived just in time for them to transportus down to pre-op. I was able to walk him into the operating room and love on bim while they administered the anesthesia.. leaving him there was the hardest thing I have ever had to do in my life.. the surgery took 3 hours.. they were able to put the liver in however the top part the skin had grown to it so that was a bit more difficult and that portion of it will be weaker. they had to go in below with a scope first to check it out so in that hole is where they made a brand new belly button for him.. they cut out the scar tissue skin that had grown around the "O" checked out his inguinal hernias from the inside and decided they could not fit them both in at this time without putting too much pressure on his diaphragm which would cause breathing issues.. they then stitched the abdominal muscles from the inside and then closed the outside.. they did a plastic surgery closure so all of the stitches are in the inside and then there is glue over it. they will all dissolve in time. after the surgery he came right off the ventilator and breathed well on his own. he has had a lot of pain which we have been trying to maintain with morphine.. he will be here for 5 to 7 days. he still has the iv and ng tube. we are suctioning his tummy so the stomach acid doesn't cause him to vomit.. he did wake up long enough to say "me love you mommy and me love you to daddy then said me really love you guys".. he is the strongest little guy I have ever known and will forever be my hero.. he will need another surgery in 3 to 6 months for his giant hernias but it should be less major than this... thank you all for your love and support.. PLEASE continue to keep him in your prayers that he may continue to do well and have as little pain as possible!! he is such a sweetheart! and so very brave! I will keep you posted.. oh and one other good thing is he lost NO blood and Dr Hatch said it couldn't have gone better and he was very pleased! miracles really do happen... our little boy is proof of that!

Running out of time.....

2009-07-08T09:24:00.001-07:00

JJ's surgery is 2 weeks from TODAY!! Now it feels like time is FLYING by way too fast.... So yesterday, Emma and JJ colored all over JJ's "O" with washable marker... when I asked them what they were doing and why, they answered with, "we are giving it a going away party!".. how funny is that?? They are so silly... at least the cute things they do take away the stress for a few minutes at a time.. on a good note, the stress has caused me to lose 20 pounds in the last 3 weeks! so i cant complain about that lol...
Well, we have two weeks left to try to come up with WHATEVER amount that we can manage for this journey... after that we will just try to make some sort of arrangements if possible.. I guess time will tell and we will see when we get there lol..
Please continue to send people this way... tell everyone you know.... post it on your facebook pages, send to your email contacts etc etc... anything you can think of... Times are tough all over right now so I know how hard it is to help.. trust me it is much harder to ask for help!!! I wish that we did not need it.. but someday we will be in a position to help other people..
Thank you for listening and for caring...

Counting down...

2009-07-01T10:04:00.000-07:00

I dont have any idea how many people actually read the posts on this blog, I am sure it is getting old by now, all my facebook friends and members of JJ's team there Im sure by now have blocked my news feeds, I guess I can't blame them it probably gets old hearing about it!.. JJ's condition has controlled our lives the past 3 years and I guess to me it has just become so normal to think and talk about it ALL THE TIME!!.. I have been so busy trying to raise the funds for the trip that I haven't really taken much time to actually even think about the surgery or afterwards... I guess that is better though because when I do think of it I am scared to death.. Scared of the "what if something goes wrong"... scared that he will be in alot of pain and there will be nothing i can do to fix it.. He will be "different" after this experience.. He will no longer have his "O" which he is so aware of now.. so aware that he is not the same as everyone else.. we go to the lake or go swimming and people just stare at him.. but to us it is so normal now that I can't imagine what it is going to be like after.. My hope is that he will feel better.. that he will look more normal, that he will feel good about himself.. that he will FINALLY be able to get enough to eat... to grow... that he will be able to lay on his tummy, and wear normal clothes.. JJ eats nonstop... his liver pushes on his tummy so he never feels full, he never can eat enough at a sitting to feel full and grow like he should.. at least after the surgery if he needs a feeding tube put in, they can finally do it.. (right now they couldnt get to his stomach from the outside of his belly because the liver is in the way)... No matter what happens though... he will always be my brave little hero.. he will always be "different" and special.... because he is the miracle I have witnessed !

Thank you to those of you who read this... who donate... who pray for and think of my little man... for those of you who pass around the info and genuinely care about his well being.. I love you all for that!! We only have 20 days until we leave and are trying to raise whatever we can before then so please... continue to pass the info

WOW!!

2009-06-23T08:01:00.000-07:00

I can't believe as I am writing this post, that we have reached over 1100 hits so far.. That many people have seen JJ's incredible story! Thank you to everyone who has looked, who has posted this on your various blogs, emails, facebook etc. so that we could drive traffic this way.. I really appreciate it!..

So, this week should be fun... JJ and Emma are both THRILLED that their big brothers Dawson and Cody have come for a visit! They will be here until Sunday and we are very happy.. for those of you who don't know, Dawson and Cody are my boys from my first marriage.. they are 14 and 11. They lived with me when their dad and I got divorced in 2000 up until this past year when they decided that they wanted to get to know the other part of their family better. Their dad lives in Herriman Ut with his sweet wife Carrie and they have 2 girls and a baby boy. Things at our place got pretty difficult after JJ was born. With him unable to go and go and go like we use to do the kids got pretty bored, SO they decided to try something new! And since I love them so very very much, what could I do other than support them in that decision.. It was one of the HARDEST choices that i have ever had to make.. They have lived there for the past year now, and are doing FANTASTIC!!! We do miss them very much though and are happy when they come to see us. (poor Cody has been sick since they got here.. he threw up all night and we are hoping it is from either nerves and car sickness since he gets extremely car sick, or that it was something he ate...) We will be in trouble if JJ gets it and last time he had the flu he spent two days in the hospital YUCK!! not to mention he cant afford to lose any weight as he only weighs 24 pounds and is almost 3!! so, wish us luck....
This week we also get to take a trip to Boise on Thursday where Emma will see an eye specialist for her TOSIS. they will dilate her eyes and make sure that there are no other problems causing the weakness in her eyelids.. Then if that goes well she will be scheduled for surgery ...............
WEll, I guess thats pretty much it! Thanks for stopping by and for thinking of us! and especially thanks to those of you who have been able to donate or spread the word! Keep it comin" we are on the home stretch now!!!

Angels amoung us.....

2009-06-17T15:04:00.000-07:00

Yes I believe that there are Angels amoung us.. maybe not in the sense of flying around with halos and wings, but in ordinary people,. who could easily just look the other way when someone is in need,..... yet people still give, to a cause, for a special angelic little boy.... there have been people who have stepped up, people i havent seen in YEARS, even strangers that i have never met that have taken the time to give to JJ.. People who could have used the money for something else, no matter how big or small the amount.. yet they choose to give it to help my little boy... every amount gets us that much closer.. Every day i worry that we wont come up with what we need.. and then a donation comes in and brightens my hopes... so to you Angels that have cared for me and my family...... Thank you... there are no real words to say how much it means, but I will remember... each and every one of you... thank you for skipping that meal out, or for not buying that outfit you'd been looking at, or for some of you that are even struggling yourselves yet still give, Thank you....JJ's big sister Emma even wants to sell her toys and have a lemonade stand to help out her little brother with his "O".... What would the world be without our precious children!.. Please continue to forward this blog to EVERYONE that you know in hopes that more people might be able to help out, even if its just a little'

ugggg....

2009-06-05T15:13:00.000-07:00

So, this past week has been crazy, both kids had to get immunizations and JJ had to have an ultra sound done on his scrotum to see if both testicles were descended.. On top of that both kids got sick, first Emma and then JJ both for several days having a super high fever and tummy ache.. seems like it is always something.
JJ's test results showed that his right testicle is on the left side because of all the intestine that is down there, and the left is up above that and coming in and out of his abdomen., the tech that did the ultrasound said that it is the largest inguinal hernia she had ever seen. He of course was a trooper and did well through it although he cried a little from the pressure, and told me that his "potty train hurt" lol. We have begun the potty train adventure so now he calls that area his potty train.. too funny...Anyways, After that I spoke to his surgeon who decided that with JJ's size , the size of the Omphalocele, and the size of the hernias, that we will NOT be able to do both at the same time. Originally we were hoping to just get everything done in one surgery, the omphalocele closure, the hernia repair and he also needs to be circumcized but the Dr feels more comfortable in just doing the Closure and nothing else at this point, the surgery itself will take a few hours and he doesnt want to add to that, also with the pressure that will be put on his insides and his lungs with having his liver inside, he feels that leaving the hernia out right now would be better so that we dont just squish the liver, and the intestines all back inside at the same time, that way there will still be some breathing room. While I hate the idea that this means that he will have to have more than one surgery, I feel that Dr. Hatch definetly knows what is best and I completely trust him..
I also was able to speak to a social worker at the hospital in Seattle to find out if they offer any sort of assistance with food while there or anything like that, AND they DONT!!! looking at all the expenses that will incur from this is crazy... just the time off work, the 6 to 10 days spent in another city with all of our meals and such, transportation in getting us all down there, and then whatever the insurance won't cover.. I think I am giving myself an ulcer just worrying about it! We continue to keep our head up though and look forward to the next chapter in our lives.. after all what else can we do? This has to be done, so we will find a way... JJ's big sister even asked today if she could open a lemonade or food stand, and also some sell some toys, when I asked her why? she said to pay for JJ's surgery... What a sweet sister!! I can not say thank you enough to the people that have found it in their hearts to give to our family... be it 5 dollars or 50 we are so grateful for every penny and every little bit helps so much.. so thank you... we will get there one step at a time!

thank you...

2009-05-29T11:34:00.000-07:00

I just want to let everyone know,. thanks to persistence and appeals, We have been able to obtain some insurance for JJ to cover partial costs for what we need to have done.. We are still trying to raise money for the things that arent covered, as well as the trip to go, the time spent off work, food while there etc etc etc.. there are so many things that still have to be taken care of. As well as any portions that will not be covered by the insurance. If by some miracle we come up with any extra it will go towards the astronomical amounts that we still owe from JJ's birth and all of the tests and specialists we had to go to while I was pregnant.. I know its so important to know what you are donating to and what is being given and where it will go. We have received around 500 dollars so far in donations.. THANK YOU so much to all of you who have donated, during these tough economic times I know that it is hard, but please know that it does not go unnoticed.. We appreciate it more than words can say.. With JJ having his liver outside and having no family around here, we havent been able to put him in to daycare, therefore we are living on one income.. If JJ were to fall on his stomach, get pushed, or hurt it in someway it would be life threatening or even fatal. That is why it is so important that we get this taken care of.
Again, thank you to everyone for your love and support.. and please... keep this going around. Every penny is helping so much..

now adays...

2009-05-21T17:11:00.000-07:00

Well, I got this blog up in such a rush, or panic if you will... that I realize now that I kinda left everyone hanging.. I got as far as moving to Twin (which was a while ago) and didnt really report much about things now adays... SOOOOO,
JJ is now 2 and a half years old... He is a shy, smart, funny, WILD little boy, that is pretty typical for his age.. He has no fear.. he is wild and crazy, he makes the funniest comments, and makes me smile every time I turn around.. As you will notice in his pictures, JJ has no front teeth.. He looks like a little VAMPIRE!! He had to have his four front teeth pulled almost as soon as they came in, they came in all messed up, and ruined,.. The dentist believes it is because of all of the things that went on when he was born and partially while I was pregnant with him.. When he was in the NICU he received TPN, which is his total nourishments through tubes.. he also was on alot of different medications, all of this caused his teeth to just be destroyed.. they had no enamel, and were very painful.. SO, we had to travel to Boise where he could be at the hospital and be sedated, and have them pulled... we are hopeful that his permanent teeth will be much better.

JJ knows he is different, he knows that he doesnt have a belly button and that his big sister does.. He calls his Omphalocele his "O",. he loves to lift up his shirt and have kisses on it.. and I am confident he will be sad to see it go.. as will I! It is such a part of him now, to be honest if i could I would just leave it exactly how it is.. But with him being a rambunctious little boy, and with his liver right under the surface covered only in skin, its dangerous to leave it this way. Really its impossible.. and it is time.. he needs to have it done. He will still be special, after all he wont have a "belly button".. Imagine the girls he can pick up with that when he grows up?? hee hee..

I love this little boy so very much... I cannot imagine my life without him.. His bravery, his love and generousity to others, his happy spirit,.. he is the sweetest little man and I am so proud to be his MOMMY!!!

Info...

2009-05-19T16:29:00.000-07:00

For those of you that are on facebook, I wanted to post the info to JJ's group there.. if you search team JJ in the search field it will bring you to the group.. Also, I started a carepage for JJ back when I was pregnant with him and updated it through out our journey, there is alot of stuff there that isnt on here because here i had to just sum it all up.. Fell free to look at it if you'd like.. go to www.carepages.com and then his pagename is jjswearingen. You have to sign up for carepages but it is free, fast and easy and there are some amazing incredible stories on there.. And last but not least, I started a family blog before making this one.. feel free to check it out.. its www.swearingenclan.blogspot.com
Thank you again for taking the time to stop by and for those that have been able to donate.. please keep it going..
love and health to all
Amy

Thank You!!

2009-05-19T14:17:00.001-07:00

I just want to thank everyone.. for following our blog, for passing along info to others and for those of you who have donated.. thank you so much! It means more to us then you will ever know. We have received 280 dollars so far, we have a long way to go and every penny counts so please keep this going... we love you all

amazed....

2009-05-16T08:15:00.000-07:00

This morning I am amazed at the power of people... at how many people have looked at this blog in the short time it has been up.. at how many people pass it on to others, and at people reaching out to someone they dont even know... Thank you to EVERYONE! For all of your love and support and If ever person that can, even gives a dollar, we will be one dollar closer to where we need to be to get our son on to the next step in his life! We will be so happy when all of this is behind us.
Please keep this blog going around and thank you for continuing to keep our family in your hearts!

Tough Times..

2009-05-15T11:49:00.000-07:00

I wanted to get this thing up and going so that people could read JJ's journey, but most of you already know it.. What you may not know is that JJ is barely NOW big enough that his surgeon feels that he is ready and in need of his closure surgery..
For the past 2 and a half years, he has been living with his liver just under the surface of his skin. He is a rambunctious little boy and loves to paly just like any other little boy.. He is definetly not "gentle" by any means... he also has bi lateral inguinal hernias.. this means that his intestines, drop down into his scrotum. This is also causing a problem because it is pushing his testicals up into his abdomen. As you can imagine, this causes some discomfort for him being that it causes his scrotum to become about the size of an orange...
As any parent we just want what is best for our little guy.. we are SCARED to death to take the next step and have surgery done but it is necessary... We just recently found out that he is being denied his medicaid coverage.. as you can imagine, this will be a very costly surgery. To make matters worse, his surgeon is in Seattle and we are in Idaho.. this will be about an 11 hour drive. JJ will be in the hospital for at least a week and that is if there are no complications..
This is one of the hardest things i have ever had to do, but we are reaching out for any help that anyone might be able/willing to give.. If you are able, there is a donate now button at the bottom of this page.. I have set up a fund for JJ for the expenses of the surgery as well as the trip. I know that times are tough all over right now, but any little bit would help so much and be greatly appreciated... If you are unable to help monetarily please keep JJ in your thoughts and prayers.. he has come so far. If you have any questions either comment here or you can email me directly at amyswearingen@cableone.net.. Thank you to everyone for your generosity and kindness. We Love you all!

2009-05-15T10:53:00.001-07:00

o.k. where was I?? so, we went home after 25 days, and came home with Oxygen and a feeding tube.. that was pretty interesting to say the least.. as if it is'nt enough to carry around a baby in a car seat, we had a backpack oxygen tank with tubes hooked to the baby.. The first few months were pretty HeCTic. we had visits with the Pediatrician like once every other week to monitor JJ's weight gain (or in his case LacK thereof) and we had an occupational therapist that would come once a week to do play therap to try to make sure that he was on track for his age..
JJ's Omphalocele grew completely covered in skin by about the time he was 3 months old so we were able to stop putting the cream on it,. it also got smaller as he grew which was the whole idea of waiting.. some of it, fell back into his insides like it was suppose to and some did not.. It sort of looked like a huge hernia..
JJ had a hard time learning to hold his head up.. I guess i never really thought of it much, but we all use our abdominal muscles more than you would think, when holding our head up.. he had a hard time with that because his abdominal muscles werent there.. He had a tough time learning to sit up, and obviously could NOT lay on his tummy.... Those boppy pillows that they make now were a Godsend for us.. He also got visits once a month from a home health nurse that gave him shots to prevent RSV.
JJ gained weight VERY slowly and was tiny for a long time.. He did however finally start nursing only AFTER being released from the hospital!! The reason he has always had such a tough time with weight gain is that he breathes faster than a typical child.. due to the fact that his lungs grew long and skinny,.. and since he was always breathing so fast he would burn off all of his calories just with breathing.. (boy wouldnt that be nice for any of us who WisH we could lose weight lol)
When JJ turned 9 months old, we decided to move back to Twin Falls IDAHO.. With that move, we decided to see how well he would do off of the feeding tube.. up until that point he was having it placed mostly just at night and it would then be hooked to a pump that would slowly dispense food all night long.. I know what you are thinking.. "boy that would be lucky for when he was a newborn, since the pump would feed him during the night i would'nt have to get up right??" WRONG...he still woke up every 3 hours to eat just like any other baby.. Plus I was having to stick the feeding tube down his nose and into his stomach almost every night at that age because he would pull it out all the time (little stinker!).. it became a process that we both dreaded so it was time to see how he would hold his own without it ... and HE DID!! after the feeding tube was out, he never lost any weight.. He continued to steadily SLOWLY gain weight!.. Plus he was right on target at that time with all of his skills.. he was Crawling and trying to stand even..
Next , we took off the oxygen.. and again were surprised.. we just slowly weaned him off and he did GREAT.. he had NO breathing problems and again didnt lose any weight.. so, we never looked back!! We got him a good pediatrician here (after throwing a few fits!) and she said that he was good to go without it.. we were ELATED!! JJ found a whole knew freedom in not being attatched and held back with tubes and so did we... like i said we had been using a backpack oxygen tank when we went out, and then around the house we had a bigger thank on wheels that we had to roll around everywhere.. and with the tube in his nose to deliver the oxygen he couldnt really get very far from it so that part SuCkEd!!
John found a job here without any problems (actually before we moved) and the kids started school and all was fantastic!..
Here are pics with the timeline of his recovery....

Birth...

2009-05-15T10:46:00.000-07:00

SO, JJ was born and sent directly to the Neonatal Intensive Care Unit (NICU). I was able to tour the unit before he was born so I knew somewhat of what to expect. I wasnt however prepared for the pain from the C-section, or the sadness that I would have sitting in my hospital room without my baby next to me. I was in the same area as everyone else who had just had babies, only they got to have their babies in little beds in their rooms and my arms were empty, JJ was on a floor below me, and that soon would become my second home away from home. I was released a few days after the c-section back to my motel room, but would spend EVERY possible minute with JJ. John had to go back to work after a few days, and the boys were starting school, thank goodness I had my family and John at home to worry about all of that.now back to JJ's care.. He was placed on a ventilator a few hours after birth. The reason for this was because he was breathing too fast on his own. In a sense he was hyperventilating so they thought they would help him out.. after 24 hours though, he came off the ventilator and was put on a regular nasal canula (oxygen in his nose) and also an NG (feeding) tube was placed in his nose and down to his tummy...

One of the hardest things for me to see while JJ was in the NICU was that hospitals always have volunteers, and they would come in and hold and rock the little babies, but this never happened with JJ,. he was "off limits" because everyone was afraid of squishing his Omphalocele.. his "O".. even alot of the nurses were hesitant with him.. that meant that i needed to spend all the time that I possibly could there, and I did.. I got little sleep and spent most days and nights in a recliner next to his crib.. His doctor even said to me one day " thank you for being here so much" I was kind of floored when he said this.. as if there were anywhere else i would be during this time? I did notice a trend though most of the babies in there were preemies or micro preemies, that couldnt even be touched, and most of their parents only came once a day.. SO SAD!! I continued to try to get JJ to breast feed, even though he would'nt take it and would feed and change him just as if he were at home.. I was determined to get my baby home to our family where he belonged.. every day I would wrap his "O" with the cream and the gauze and just be there with him.. what else could I do??JJ spent 25 LOOOONG days there in the NICU.. during that time I learned to change his dressings, watch his oxygen and learned how to place his feeding tube.. finally after spending a night in the parent room with him and without having any problems we were cleared to GO HOME!!!!

Some of the many things you worry about with "O" babies are "how can he wear regular clothes?" how do we hold him without squishing it?, "what kind of carseat can he go in that will be safe and secure without squishing his "O"..... through trial and error we figured it all out!!When I first visited the hospital while pregnant, the dr's there told me that they don't know why but they will see this condition a handful of times and then not again for several years... JJ's was the first there in 7 i think it was. but after JJ, there were 3 more babies born with it and 1 of those unfortunately did not survive.. I was able to use what we had gone through and talk to the mothers of those babies while they were pregnant and try to re-assure them.. they were able to meet our little man and see what a miracle he was!! All of the dr's and nurses had fallen in love with JJ and we still keep in touch!We were so blessed to have gone to the hospital we did, because just a few years earlier, one of the founding doctors of the paint and wait method Dr Edwin Hatch, had moved from Seattle Washington to Albuquerque New Mexico!! (and has since gone back to Seattle... I truly believe it all happened for a reason and he was the answer to our prayers!)

The beginning....

2009-05-15T10:33:00.000-07:00

When I found out I was pregnant with JJ we were very excited.. excited for the addition to our family and that Emma would get to have a sibling closer to her age then her two older brothers from my previous marriage..

Little did we know, this pregnancy would turn out to be "difficult at best" at 10 weeks along, I went to the dr for a regular checkup and they did an ultra sound because I had some cramping, John was at home watching Emma and the Dr sat there for a few minutes and then called in another dr. and then told me that they thought that there was something wrong with the baby. They decided to send me right away to a maternal fetal medicine specialist in Boise. Of course I was so worried and went home crying and told John. He told me to just relax and not be stressed out and we will figure it out.. (easier said than done of course). A week later I went to the doctor in Boise, He told me just relax, the dr's in Twin Falls are always sending patients up here and it is usually a false alarm, I could tell however by the look on his face when the ultra sound started that in our case that wasnt true. It was no false alarm. Our baby was growing with part of his insides on the outside. It is an abdominal wall defect called an Omphalocele and up until that time I had never heard of it before but I was about to begin the biggest journey of my life and by the end would be far more educated on the condition than I could ever imagine.

Omphalocele (pronounced um-FAL-uh-seel) is a hole in the muscles and skin at the belly button (called the umbilical ring).As a baby grows inside the mother’s womb, some of the baby’s organs start to develop outside of the baby’s belly. Later in development, these organs are supposed to move inside the baby’s belly. In omphalocele, they do not move inside the belly. Instead, there’s a hernia, or abnormal hole, through the baby’s umbilical cord. The organs stay outside the baby’s belly, and the umbilical cord forms a sac around them. There may be only a small bulge of organs, such as a part of the intestines, on the outside. Or there may be a large bulge with several organs, like the intestines and liver.This condition affects 1 to 2 in 10,000 children. It’s more common in babies of mothers over age 35. In our case however, I was 31 almost 32 when JJ was born.About half of babies with omphalocele have other birth defects, such as problems with their heart, spine, digestive tract, lungs, and urinary tract. Some babies have chromosome abnormalities. We were told that the larger the Omphalocele the better for JJ and the less of a chance of him having other abnormalities. Alot of babies born with this condition are also born with Down Syndrome (trisomy 21) or Trisomy 18, which means too little or too many chromosomes. Children with Trisomy 18 RARELY survive. There was no real reason as to WHY our baby had this defect so we needed to have genetic studies done as well as an amniocentesis so that we would know what we were facing.At that time we were told that the better option for us would to be to terminate our pregnancy and try again. Obviously we left in tears. I was scheduled to return to the specialists every 3 weeks. Boise is aproximately 2 hours from Twin Falls and with 3 other kids that would prove to be a difficult task.After several more visists to the specialist, we found out that JJ's Omphalocele contained all of his liver and a little bit of his intestines. It was so scary because at every ultrasound it seemed bigger and bigger, it was equivalant to the size of his head. We went ahead and had the amnio even though the outcome would NOT change regardless of the problems that we were facing termination was just NOT AN OPTION FOR US!! Every time i left the doctor they would tell me again, that "termination is the best choice here"... HOWEVER, the amnio results came back and we were told that we were having a baby boy, whom we would name John (after his daddy) Joel (after grandpa) and call him "JJ" and more importantly that there were NO CHROMOSOMAL ABNORMALITIES.. needless to say, we were ECSTATIC!!!We were told in boise that our only option would be to have him delivered by C-section (if he stayed in the womb that long) and that after birth they would be doing surgery immediatly to try to "fit" his liver back in.. That these babies typically are born with severe lung problems because their lungs grow long and skinny because of the extra room but that they usually do not function well.. and that at that point either the surgery would kill him or it wouldnt.. That for us was UNACCEPTABLE.. we did alot of research and found that in several other hospitals in the nation, they practiced a method called "Paint and Wait" in this method they take a cream called sylvadine (typically used for burn patients) and apply it to the Omphalocele several times a day to promote skin growth and ward off bacteria. So essentially they would "paint" the defect with the cream, the skin would grow up over it, and we would "wait" until he was big enough for his body to accept having everything shoved back in.. for us this was FANTASTIC news.. and the ONLY option.. we knew we needed to go somewhere that this could be done.. So, we packed up our family, sold our house and moved to New Mexico where this would be an option and where my family already was!..

Fast forward through the middle of the pregnancy, now we get to the last trimester.. I now was traveling 3 hours to a Doctor in Albuquerque for my visits.. I was told while there that i needed to MOVE to a motel right next to the hospital and wait for our baby boys arrival. SO, that is what i did.. I moved there on July 23 and my C section was scheduled for August 1st.. WE were very excited and scared all at the same time.I had my c section on the morning of August 1st, and that was by far the scariest day of my life., no parent should ever have to be faced with the reality that your child may not survive. That morning we heard the very very best thing that a parent can hear! our baby cried.. which meant that he was BREATHING ON HIS OWN.. we were told that he probably wouldnt and would need to be on a ventilator... they showed us his little face and took him away IMMEDIATELY.. i didnt see him for several hours but when i did.. it was the best feeling ever.. he was BEAUTIFUL!!!!