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Hunter is doing well. Just days after his birth he underwent major heart surgery which was a total success. He also had some breathing issues and has seemed to conquor those as well. Hunter is with us because of God's guiding hand along with all of his physicians, doctors, and family.
Hunter is not the child we prayed for, he is a bit different, and he far exceeds anything we had hoped for. Hunter has Down Syndrome and has already made me a better person. He is special in many ways and has also touched many others. We are blessed and feel special that Hunter chose Diane and I to be his parents. You can see his special blessing just radiating outward like bursting rays of sunshine.
To put our situation into perspective I read this at 1 am the night Hunter was born while he and his mom were in an ambulance on the way to another hospital. I was having some difficulty with the circumstances of the situation and read this. I think you might enjoy it as much as I did.
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"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
By Emily Perl Kingsley"*****************************************************
Diane and I would also like to thank the many family, friends, doctors,our church, and nurses who have done such a wonderful job of caring for Hunter and moral support for us. A special thanks to the nurses in the NICU and PICU who were absolutely fabulous and supportive. And thanks to my favorite nurse in PICU, you know who you are. There is no way we can name everyone but just remember, we will always remember what you did for Hunter and us.
Thank you so very much.
As of Nov 23, 2003, Hunter has left Pediatric Intensive Care and I now is the regular baby section. We are so happy he is breathing on his own. Now he has to learn to eat. To do this he can do 2 things, watch his dad, or let the nurses show him how. I think the nurses will do a better job.
Nov 26,2003, Hunter is eating just a little at a time by himself and filling diapers left and right. All that we can ask is for him to learn a little more each time. And I am so happy to be in Holland.
Nov 29, 2003, Hunter is progressing slowely regarding his learning to eat, but is progressing. Now he is up to 20 cc's on average per sitting. Sometimes more, sometimes less. His incision is a bit of a concern in one area and looks a bit infected. The Dr. does not think it is, but better safe than sorry. Diane and I are still in awe at God's wonderful power and insight. Everyday we learn more about our new family thanks to Hunter. He is such a joy to watch and wonder at. He doesn't fuss hardly at all, and takes all the poking in stride. In my estimation I think Hunter will be in the hospital for another week. As much as we would love to have him in his new home, his health is our number one concern.
Dec 2, 2003 Hunter is doing much better. He is eating about 30 cc from a bottle on his own, then gets the remaining 25 cc in his feeding tube to his little tummy. He is feeling better, incision is healing well. It looks like we have the green light to bring this little bundle of joy home on Thursday Dec 4, 2003. The big reason is because Diane is a nurse and can handle some of the medical circumstances, like packing his wound, feeding him, and changing his feeding tube. Otherwise Hunter would be in the hospital for a bit longer. It will be a beautiful change to welcome him into our home.
The Dr.'s and nurses have been fantastic and I can not say enough about them. During our stay they have provided us with wonderful words of encouragement. As well as our many friends, and their friends.
Diane and I would like to say a special thank you to all who have helped during both the joyful and difficult times. To our family, friends, co-workers, doctors, nurses, perfect strangers who heard of Hunter's situation, and especially to our God. It was each and everyone of you who picked us up, held us, dusted us off, and encouraged us to go on. We may never have the chance to thank you individually, but please remember, we will never forget what each one of you did for this family. The emails that we received have been archived so our son can read the words of encouragement and dedication when he grows up. So he can see how supportive and caring people can be. Thank you to everyone who signed Hunter's guest book. That means more to us than anyone will ever know. We love all of the words of encouragement and check the site several times a day to see who has visited. I am also saving the entries so Hunter can read them someday.
In our photo gallery you will find pictures of 2 little boys. One boy is Nolan who has cancer and is putting up a terrific fight. During Hunter's stay in the hospital we met Nolan and his family. They are very very nice people who have been dealt a bad hand.
The other boy is another Hunter. He is very precious and also has a wonderful family. Hunter's situation is a difficlut one and looks to be a long battle.
We would appreciate it if anyone who is praying for our Hunter would extend the courtesy of asking God for his help with these innocent children too. They need all the help they can get.
I never knew being a father would mean so much to me. I can not describe the feeling of overwhelming joy when I think of our Hunter. He is with our family thanks to talented physicians, nurses, family, and friends. Thank you so much for helping me participate in such a glorious occasion.
Special thanks to Diane, who has give me the honor of such a wonderful son.
Dec 3, 2003 GUESS WHO IS COMING HOME TOMORROW???
Yes, Hunter. The Dr's and nurses said he can come home for the first time in his little life. Diane has done a fantastic job of decorating his room. I helped a little, but she did most of the work while I did the webpage. We will post pictures and will keep everyone updated when he is home.
Thanks to all.
Dec 4, 2003. Yippppeeeeee, Hunter is home. He came home today at 2:16 pm wearing a cute little helicopter and cartoon plane onezie and his dark blue navy peacoat pants combo. It was a wonderful beginning for our son and us. We put him in his bed in his new room and he looked like he had been there all the time. The sun shone in as if God himself was peaking into Hunter's window and saying hi. This was a remarkable day for us in more ways than one. It is truely wonderful to have one of God's blessing trusting you for every one of his needs, trusting you for his vary existence. Boy am I lucky. On Dec 5, 2003 I will post some picutres of the arrival.
Dec 6, 2003. Ok, you want an update, here it is. We are very very tired. More tomorrow.
Dec 7, 2003 Ok Ok, here ia another update. I have been a bit lazy, enjoying a weekend indoors with my new son. He is doing very well. Gaining weight, now up to 7 lbs 4 oz, 19 1/4 in long. He is eating better, taking almost all of his bottle by himself, the rest we still put in through his NG tube in his nose. He is filling diapers left and right, also trying to fill them when he doesn't have one, and he goes A LOT. Just ask Diane about that one, hee hee.
He possesses a wonderful energy about him. He is just a joy to hold and stare at.
I will have more updates, but I need to keep them brief. I am supposed to be limited to 8000 characters, I currently have more than 9000, HAHAHAH, oh well. Hunter is worth it.
Dec 9, 2003, Hunter is doing great. His wonderful mother had to put her foot down and laid the whole feeding tube thing on the line to him. Diane has been changing his NG feeding tube every 3 days. But he had been taking almost all of his bottle so on the day she was going to change his tube, she left if out for the day hoping he would keep eating well on his own. Fast forward to the 10:00pm feeding, Hunter is not willing to take the rest of the bottle, so mom lays it all out. She tells him, "Take the rest of the bottle or the tube goes back in the nose." Well, guess who took the rest of the bottle with a smile on his face. Ever since then, he has been eating like a champ.
Dec 15, 2003, Sorry about the lack of updates, but he does take just a bit of our time, :) But I do try and put up new pictures everyday. Now let's talk about the little one, he is doing very well. He takes almost all of his bottle at each feeding, sometimes taking a bit more. This is good, it balances off the times he doesn't get his full meal deal. When he is hungry he moves his head and latches onto that nipple like a duck on a junebug. He just loves to eat. He looks wonderful, has no problem loading up the diapers, and likes to trick me into not holding up a spit cloth, then he unloads. For those of you who know me, the father, you know I love kids, most everyone's, but I had no desire to let them poop, pee, and upchuck on me. Many said it would be different when it was my own. Well, you were all correct. When Hunter shoots a trail of formula out, my only concern is him. He did let one go and I made sure he was ok, and we continued the feeding, etc. It wasn't until later that I finally figured out why the entire front of my shirt was stiff and stuck to me. Hee Hee, Hunter left his unwanted formula on my nice clean shirt.
He is moving very well, fighting everytime we change a diaper or change his little clothes. He kicks and thrashes his little arms and legs while letting out little squeeks. The physical and occupational therapist say he is doing well and improving. He tries to hold his head up or move it quickly off of your shoulder when your burping him. This is always fun when it is 2:00am and your not on top of your game, he can wake you up in an instant. What fun. It is really enjoyable when all he does is look at you when he is eating, just melts you heart.
Diane is very busy trying to keep track of all of Hunter's Dr's appointments. He is a very busy boy. His wound is healing nicely, almost all closed. The cardiologist says he is doing very very good, as well as his surgeon.
I will keep putting up as many pictures as I can and rotate them to keep them fresh as long as people want to still view them.
We have had wonderful support from many many people. Many have not signed the guest book but chose to email us with kind words of encourgement and support. I am going to take excerpts from some of the emails that really touched our hearts and display them. They will be anonymous, but they are far to important and beautiful for us not to share with our extended family.
Thank you all, and thanks to God for his helping hand and guidance.
Dec 19, 2003 Hunter is doing great and is feeling well. His pediatrician says he needs to eat MORE. He eats well as it is, so new we have to really work to get him to take more. This is always fun at 1 am and 3 am. But he is worth it. There are new pictures so visit often.
January 1, 2004, What a wonderful way to start off the new year, holding my new son. The holidays were busy, but well worth it. A first Christmas with our new addition was very powerful and emotional for me. It was truely a new beginning. I always love Christmas, and this made it even more special having a blessing from God with us while celebrating God's own birth. It brought back a flood of memories from my wonderful childhood. I now see myself taking a father role. The same role that I viewed my dad in when I was young, in wonderment and awe. He did such a great job and I just hope I can do as good a job for my son. Making sure the Christmas tree is up, all the christmas lights work, the fire is going in the fire place, and all the new toys are put together and have a couple of hours of break-in time on them. While mom is doing a great job of last minute organizing while it seems like she is cooking 5 meals at once. We spent Christmas eve at the Frechette's with Hunter's newest cousin, Gradon, who is 6 weeks older that Hunter. What a joy to see new families, new additions, and beautiful children. Christmas day was held at our house. Diane did a wonderful job of cooking and setting everything up. This day too was a joy. Dians's extended family gathered around, held Hunter, and broke bread as families should. There is not one thing that I could think of to make both days any better. That is how perfect they were.
At times the simplest things are the most pleasant. I sat in front of our Christmas tree listening to the same Christmas songs I sang when I was 5, and I held my new son. He gave me such a feeling of worth, wonderment, and purpose. To be granted the priveladge of guiding a new human through the challenges of life and celebration is almost sureal. As Diane put it, it almost doesn't seem real. One minute we can do almost anything we want, the next minute our world now revolves around feeding a tiny little tummy.
Hunter is improving leaps and bounds. The physical and occupational therapists say Hunter is even AHEAD of kids without down syndrome. We work with him all the time, but he is doing most of it himself. The little things mean the most to us right now, lifting his head, moving his arms and legs nicely, and trying to roll himself over. What a little trooper. He now weighs 8 lbs 5 oz, and eats 3 oz at his feedings. He burps well, and occassionally will add some formula to the package as a bonus.
Jaunary 7, 2004
Hunter is doing great. He is moving all around, looking at everything, eating well, and is gaining weight. He goes to the peditrician today for a weight check and we will see how much he has put on. Physical therapy is here today making Hunter work his little muscles. He is doing a nice job lifting his head, pushing with his legs, and moving his arms while making little fists. He is, as are all little babies, tiny miracles. His clogged tearduct seems to working now, no more tears. He still eats every 3 hours, but we are checking with his doctor to see if we can scale that back. Sometimes he just eats a little bit, then starts sawing logs again. Hard to feed a baby when his mouth is wide open and he is snooring.
If you check the guest book, you will find entries that I have put up from parts of emails that we received for Hunter. I didn't put any names with them because I have not asked for permission. But some of the messages wers so beautiful, we could not of kept them to ourselves.
Thanks again to everyone, your thoughts and kind gestures mean the world to all of us.
January 21, 2004
Sorry for the delay, been busy with the little man. Photos will be up soon, as soon I fix my Photoshop.
Now for good news. Hunter now weighs 10 lbs, 8 oz..He is a little porker now. The Dr. said we can change his formula to a lower calorie, so it is thinner, thus less vomiting. However this has not been the case so far, hee hee. He sleeps most of the night now, YEAAAA. Finishes eating at 10:30 or so, and sleeps till 4 or 5 am. His hearing is great, as are his eyes. He recognizes his mom and dad all the time. The geneticists watched him and was very impressed with his tracking and recognition. Physical and occupational therapy ahve been doing a great job and love his progress. He moves all his limbs very well, grabs his own hands, and kicks a lot. He is in the upper range of growth and development. All his doctors couldn't be happier.
February 2, 2004
Wow, how time flies. I have new pictures up of our little miracle. Hunter is doing fantastic. He is now 82 days old. It seems like yesterday my friend was driving me to the hostital to meet Diane and wait for the birth. The memories have a full range of emotions, but overall, we are very very pleased.
He now weighs 11 lbs 12 oz, little piggy. He keeps most of his formula down, with the occasional reversal of contents. I have learned that I can not freakout and run to the bathroom any more to rinse the used formula off. I just sit there holding him when he is having tummy troubles while he looks at me with his eyes wide open, as if to say, "Dad, please handle this as soon as possible. I am not having any fun". I make sure he is recovering, all the while the formula is seeping through my clothes, down my back, and all over my pants. From now on, I am going to feed him with a beach towel. This way I am sure to catch it all. His physical and occupational therapists say he is doing well. He is almost holding his head on his own. He lifts his hands to his mouth and sucks on his hand. And has some nice strength in his legs. Child developement services says that if he didn't have down's, they would have absolutely no worries about him. He is doing this good thanks to the efforts of his wonderful mom. Diane has been handling every aspect of his doctors appointments, his therapies, and the mountain of paperwork. Nearly everyday someone is coming into the house for some reason to evaluate Hunters progress, and Diane has coodinated everything that has needed to be done.
we are learning more and more everyday about Hunters condition and what we can expect. We have meet and spoken with others who are in the same situation as us, and they have been outstanding. There have been many ups and downs, but everyday gets a little better.
I have some nice news on the 2 other boys that we asked you to pray for. Nolan is home, and is doing well. The other Hunter that we met, who we thought would not be leaving the hospital anytime soon, was not in his hospital room when I stopped in to visit. He went home. This is great news. Thank you all for your prayers and support for them.
For those of you who are interested, I have put together a little video of some of Hunters pictures. I did this for a few who could not see all of our pictures. If you would like to see it, please follow these directions.
Go to this web address.
www.innovativevideo.net/hunter/
Click on the file that says "Hunter's First weeks".
You can either watch it from there, or you can download it to your computer so you can watch it when you want. To watch immediately, just click on it, and will start to play.
To download it, Right click your mouse on it, you want to click on "Save target as". Save it to your desktop. When it is done downloading, you can watch it.
Be warned, it is a large file and if you have cable, it will take just s couple of minutes. If you have dial-up, it may take 20 minutes, so be ready to wait just a little bit. Make sure your speakers are on so you can listen to the music too.
If anyone is having trouble, just email me, and I will be glad to help you. If your Windows player says that it can not play the video, and you need to download something. Do it. It should tell you where to go to download it, then you will be able to watch it.
February 11, 2004
Hunter is just a complete joy. What a treasur he is. He gives you the best little looks. He is doing great, gaining lots of weight, and has little muscles. He functions very well, I can post a picture of one of his diapers if you don't believe me. We exercise him all the time and make him laugh. It is amazing that he is so young yet able to recognize his mom and dad. When Diane goes up to him and talks to him, he gets wiggling and making little sounds. Diane is doing an excellent job with his care and upbringing. You couldn't ask for a better mom. Diane took some pictures of him all dress up with his tie on. I posted some pictures for you to see.
I hope everyone is viewing the video ok. Please email me if you are having any difficulty, I will be glad to help.
April 10, 2004
Well, here it is, an actual update. I know it has been some time, but I have been just a bit busy with out new angle. I apologize for the delay. We are slowly working into our routine so updates and pictures will be coming more often. Hunter, as well as all of God's new additions , are simply put, miracles. He has brought such joy to our family, joy to our extended family, and joy to people who do not even know us, but know of Hunter's new and very eventful journey thus far. He is eating well, has minor reflux, which makes for exciting meal time. It has slowly improved over time, and we are confident he will out grow it shortly. He holds his head very well, kicks and moves as though his is a six month old. He is very inquisitive and reaches for almost anything that catches his eye. He does a good job of playing tug of war with his own hands then gives a little grunt when the game is a draw. He is such a good baby and we couldn't ask for anything better. He seldom cries and gives just a hint of noise when he needs something. I think talking and making noise is his second favorite thing to do. Getting his diaper changed is first. He brings new energy and a sense of calm every morning when we wake up to him. Around 5:00 am you slip one eye open to see what the noise is, low and behold, it is a little gift cooing in the most majestic way. Diane is usally the one to scoop him up and cradle him for a while. It is hard to describe the feeling I have looking at him first thing in the morning. He looks at you and gives you the biggest most loving smile. Warm rays of love and harmony shoot through you as you watch him realize who you are. At that moment, the deck of cards life has shuffled for me seems to be a perfect order, and all of the unimportant distractinos of life have magically vanished.
We have had a wonderful and very supportive group of family and friends, and that has made such a difference in our lives. We are honored that so many of you care so much about our family. Hunter is a blessing with special qualities. He is going to be a gentle teacher for me. He has already taught me many things about myself and life.
Most of Hunter's fantastic progress has to be given to his wonderful mother. Diane has, and continues, to be a great mother. She handles maintaining a nice routine for him, while making my little jobs very easy. She always has everything I need organized very well. She schedules all of his physical and occupational therapies every week, along with Child developement services as well as the visiting nurse. I on the other hand, take care of voicing an opinion on behalf of Hunter when the state wants to cut funding. Funding for the programs that Hunter is currently using which will help his physical developement for the rest of his life. We will continue to work with Hunter making sure he is getting everything he can to develope on pace with his age group.
I want to wish everyone a Happy Easter and enjoy our little bunny rabbit on the picture page.
Hunter has his own domain name now too. It is
www.Hunter2003.com
From now on, the updates will be located below in the "View my Journal" section. The change was implemented by Babiesonline.com, not by me.
FOR MORE PICTURES OF HUNTER GO BELOW AND CLICK ON FAVORITE LINKS.
FOR MORE PICTURES OF HUNTER GO BELOW AND CLICK ON FAVORITE LINKS.
FOR MORE PICTURES OF HUNTER GO BELOW AND CLICK ON FAVORITE LINKS.
Feel free to email us at Surfer2@maine.rr.com
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