from our family to yours we want to wish you a very merry Christmas! gavin has really been on the road to recovery since his surgery a little over 2 weeks ago. closing out this 2010 and looking forward to what God has in store for us in 2011. we had a wonderful time celebrating Christmas Eve with my folks, josh and grandma von. it was her first time being with gavin and it was very special!
this morning we were up bright and early (thanks son!) and we had a beautiful time reading about the birth of Jesus in both Luke and Matthew.
this afternoon it's time to celebrate with the nikolin side while we have a mexican fiesta and open gifts and watch some games!
we just want to thank you all for your love, prayers and support of us during this very trying and difficult year. thank you so much for your comments along the way - they have really helped us feel your presence - making it just a bit easier to go through this.
looking forward to many more updates into the new year...
jeramy, tracee and gavin
Saturday, December 25, 2010
Friday, December 10, 2010
surgery update
gavin's surgery went well. they ended up not taking him back until 12:20 to start the surgery. i hated waiting. i know hate is a very strong word but i hated it....wondering what exactly they were doing at each moment. first they put gavin to sleep with a mask, then gave him a shot in his lower back, similar to an epidural. then they started his IV and intubated him. she ended up going in through his belly button and then inserting the tube and she went ahead and fixed his umbilical hernia on the way out. score! killing two birds with one stone, i'll say!
the doctor came out once his surgery was over and told us that the anesthesiologist was able to take him off the ventilator and that we could make our way up to the picu and he would meet us there. we walked with the doctor as she told us how the procedure went....(i wasn't listening). all i cared about was seeing gavin. where was he? i knew he wouldn't be awake yet but i just had to see him and know that he was okay. we waited outside the picu doors for only a few seconds before we saw the anesthesiologist and a nurse wheeling him toward us. he was on a mask and the anesthesiologist was trying to stimulate him so that he would keep breathing. although they extubated him, they had him at 15 liters of oxygen. to give you some perspective, gavin (who has significant lung disease) is on 1 liter at home and our concentrator at home only goes to 5 liters. in fact, jeramy and i didn't even know that oxygen could go that high. we know enough about his sats that just by looking at the monitor we knew that gavin was still struggling. he was satting in the high 70s/low 80s for his oxygen and his heartrate was low (which is why he needed the continuous stimulation). the anesthesiologist said that if didn't begin to show improvment and wean down on his oxygen, it could possibly lead to reintubation......no!!!!!
thankfully, over the course of the evening, he was able to wean down to 10 liters and then down to 3 and this morning, he is back down to 1 liter. praise Jesus! indeed, He has protected gavin once again and He has brought us through another trial.
today, we have gavin on continuous feeds (for a time being, you have to do that with g-tubes). the doctors (and jeramy and i) don't want to change anything about how we were doing feeds at home so we want to try to reintroduce bottle feeds to him. he was eating about 2 ounces by bottle and then we gavage 3 ounces. we tried giving gavin a bottle about 30 minutes ago (just an ounce) but he instantly started gagging and spit it right up. it didn't even get into his tummy. the speech therapist was here with us and she told us to expect that since he was just intubated. his airway is now floppy and his vocal cords are more open than they usually are because of the tube so...it is probably going right into his airway. we are going to give it a few more hours and try again. please pray that he eats. we fear that they won't let us go home until he shows that he can take an ounce or two and the last thing we want is to stay another night here in the picu. there are sick kiddos in other rooms around us and g doesn't need that exposure.
thank you for all of your support and prayers during this time. we greatly appreciate it. gavin is such a fighter. he is inspiring. he has tubes, wires and IVs everywhere and all he wants to do is play! he woke up this morning all smiles. he was giggling and cooing like crazy. the doctors and nurses were all amazed. they all said it is not typical for them to see such alert (and happy) behavior for babies after surgery. i love that kid.
we will keep you all posted on his progress (hopefully from home)! thanks again for the prayers.
i think it is very obvious that there is One who is making all of gavin's progress possible. to deny that, would be ignorance. he's not just a "lucky kid". i get mad when people say that. his progress has nothing to do with "luck" or "stars aligning". he is a little boy loved by the Heavenly Father-who has a plan. gavin has touched a lot of lives already. he's touched mine. has he touched yours? i hope so.
let us never forget that God is good....all the time.
the doctor came out once his surgery was over and told us that the anesthesiologist was able to take him off the ventilator and that we could make our way up to the picu and he would meet us there. we walked with the doctor as she told us how the procedure went....(i wasn't listening). all i cared about was seeing gavin. where was he? i knew he wouldn't be awake yet but i just had to see him and know that he was okay. we waited outside the picu doors for only a few seconds before we saw the anesthesiologist and a nurse wheeling him toward us. he was on a mask and the anesthesiologist was trying to stimulate him so that he would keep breathing. although they extubated him, they had him at 15 liters of oxygen. to give you some perspective, gavin (who has significant lung disease) is on 1 liter at home and our concentrator at home only goes to 5 liters. in fact, jeramy and i didn't even know that oxygen could go that high. we know enough about his sats that just by looking at the monitor we knew that gavin was still struggling. he was satting in the high 70s/low 80s for his oxygen and his heartrate was low (which is why he needed the continuous stimulation). the anesthesiologist said that if didn't begin to show improvment and wean down on his oxygen, it could possibly lead to reintubation......no!!!!!
thankfully, over the course of the evening, he was able to wean down to 10 liters and then down to 3 and this morning, he is back down to 1 liter. praise Jesus! indeed, He has protected gavin once again and He has brought us through another trial.
today, we have gavin on continuous feeds (for a time being, you have to do that with g-tubes). the doctors (and jeramy and i) don't want to change anything about how we were doing feeds at home so we want to try to reintroduce bottle feeds to him. he was eating about 2 ounces by bottle and then we gavage 3 ounces. we tried giving gavin a bottle about 30 minutes ago (just an ounce) but he instantly started gagging and spit it right up. it didn't even get into his tummy. the speech therapist was here with us and she told us to expect that since he was just intubated. his airway is now floppy and his vocal cords are more open than they usually are because of the tube so...it is probably going right into his airway. we are going to give it a few more hours and try again. please pray that he eats. we fear that they won't let us go home until he shows that he can take an ounce or two and the last thing we want is to stay another night here in the picu. there are sick kiddos in other rooms around us and g doesn't need that exposure.
thank you for all of your support and prayers during this time. we greatly appreciate it. gavin is such a fighter. he is inspiring. he has tubes, wires and IVs everywhere and all he wants to do is play! he woke up this morning all smiles. he was giggling and cooing like crazy. the doctors and nurses were all amazed. they all said it is not typical for them to see such alert (and happy) behavior for babies after surgery. i love that kid.
we will keep you all posted on his progress (hopefully from home)! thanks again for the prayers.
i think it is very obvious that there is One who is making all of gavin's progress possible. to deny that, would be ignorance. he's not just a "lucky kid". i get mad when people say that. his progress has nothing to do with "luck" or "stars aligning". he is a little boy loved by the Heavenly Father-who has a plan. gavin has touched a lot of lives already. he's touched mine. has he touched yours? i hope so.
let us never forget that God is good....all the time.
Wednesday, December 8, 2010
on bended knee
gavin's surgery is scheduled for tomorrow at 11:30. we check in at 9:30 where we will meet the anesthesiologist and get started. gavin will need to be intubated and put on the ventilator for the surgery. this is obviously our biggest prayer request because of his lungs. we pray that there are no complications coming off the ventilator and that gavin is able to return to the oxygen that he is on. a kiddo like gavin with his lung disease has the possibility to struggle coming straight off the ventilator since his lungs will love the break. fortunately for us, it is not a lengthy surgery. we are grateful for that. we are also grateful for the surgeon that we have. she is the best out there. in addition, we have a top pediatric anesthesiologist who also does a ton of work with nicu babies so he's use to the more critical, tiny babies.
we will be staying a minimum of one night in the picu. hopefully we will be able to come home on friday. Jesus, hear our cry. hear our plea. please hold our baby once more and get him over another hurdle, as You have already done so many times before. we trust in You.
please please pray for me and for jeramy as well. i know that we are both dreading being away from our baby tomorrow....even for a bit. i know that every mother out there can relate to the pain they would feel having their baby put under anesthesia. i think i would feel a thousand times more confident going into this if gavin's lungs were not as bad as they are. it makes me nervous...nervous to the point that i feel sick today. the good thing is that this kid is the toughest kid i have ever met and it is truly inspiring.
thank you for praying. specifically, we would love it if everyone could join together at the time of his surgery tomorrow and pray. 11:30. be there. be praying. our God is an awesome God.
we will be staying a minimum of one night in the picu. hopefully we will be able to come home on friday. Jesus, hear our cry. hear our plea. please hold our baby once more and get him over another hurdle, as You have already done so many times before. we trust in You.
please please pray for me and for jeramy as well. i know that we are both dreading being away from our baby tomorrow....even for a bit. i know that every mother out there can relate to the pain they would feel having their baby put under anesthesia. i think i would feel a thousand times more confident going into this if gavin's lungs were not as bad as they are. it makes me nervous...nervous to the point that i feel sick today. the good thing is that this kid is the toughest kid i have ever met and it is truly inspiring.
thank you for praying. specifically, we would love it if everyone could join together at the time of his surgery tomorrow and pray. 11:30. be there. be praying. our God is an awesome God.
Wednesday, December 1, 2010
family
here is a picture from our first family photo shoot that we had. my dear friend natalie montez-miller took them. she is one of the most talented photographers in arizona and we were so blessed to get to spend this day with her. check out her site if you get a chance. her link is to the right (or you can go to photosbynatalie.com. this picture melts my heart...more to come soon!
mommy and daddy love you sweet pea!
Tuesday, November 30, 2010
surgery
our worst fear has come true. gavin has to have surgery. we have made it so far without surgery for this little guy and for that, we are blessed; however, we are experiencing a wide array of feeding problems with this precious little boy. i had to place his feeding tube back in last week because he was not getting the amount of food he needed to gain weight. in fact, he was losing weight. gavin cannot lose weight. it compromises a variety of things for him that tend to cause everything to spiral out of control. his breathing becomes compromised because he doesn't have the nutrition he needs and it requires him to work harder and he doesn't receive the calories that he needs in order to grow healthy lung tissue. ultimately, our overarching goal is for his lungs to heal and without proper nutrition, they are unable to do so.
the feeding problems began for gavin about 4 weeks ago when he began to teethe. as exciting and "typical" as teething is, it presented some problems for gavin. all children develop excess saliva in their mouths as a result of teething; however, for gavin, the saliva caused him to gag a lot. because he was intubated for so long (2 and a half months), he has a condition called esophogeal dismotility. this means that he doesn't always feel the sensation that there is stuff pooling in the back of his throat or slightly down his throat and he won't swallow as often as he should like other children do as an every day reaction to that sensation. so he would gag. the problem with the gagging was that his ng feeding tube goes down his nose and into his stomach and each time he would gag on that excess saliva, he would throw up his ng tube and any food that was in his stomach whether it was a partial or even whole feed. it was so discouraging to us because feeding gavin is already a huge challenge in our household and it is a time that is stressful on us and on gavin. in an instant, 30 minutes of feeding could be wiped clean. so.....gavin wasn't getting the volume that he needed. i had to keep reinserting his ng tube and my poor baby just hates that (do you blame him??). we tried for a period of time to just feed him without the tube in and hoped that he would just take enough volume by bottle (since he is on high calorie formula-30 calorie). but, his lungs can't do that much work. it is too hard for him to eat that much and we see drastic increases in his work of breathing and his oxygen requirements.
after talking with doctors throughout the past week, we have collectively come to the conclusion that the answer to solving this problem is to have a gastric tube (which is also called a g-tube) surgically inserted into his stomach. the surgery will take about an hour to an hour and a half. now, i am well aware that kiddos have surgery every day. i understand that. but kids with lung disease don't. putting gavin on a ventilator seriously compomises him. the process of intubating a kid like gavin is difficult because gavin's lungs will LOVE the break and as "typical" kids are extubated right off a ventilator after surgery, gavin might not be as easy. as many of you, who keep up with our blog have read, it has been a challenge to get gavin to the place we are today. we don't want any setbacks.
jeramy and i are both ready for the g-tube. we know that it is what gavin needs. we know that it will give him the best opportunity to grow and develop without the stress of having to eat. we will still be able to give him bottles which is great for his development. we are looking at it as a short term solution to our problem and we hope and pray that this will not be a long process for him. hopefully, this is exactly what his little lungs need. that way, we can continue to play with him and do more developmental things with him. right now, feedings consume our days and make him so tired that he doesn't have strength for much else.
we are trying to make it until next monday when we have our consult with the surgeon. that means the surgery will likely take place tuesday or wednesday of next week. please pray that between now and then gavin's ng tube can stay in (that is how we are doing all of his feeds to give him a break). pray for skilled hands from the surgeon. pray that the anesthesiologist (who i hear is the best) can possibly do a partial intubation-just to the vocal cords and avoid the ventilator. pray for a fast recovery for our little sweet pea. and please please please pray for me and pray for jeramy. we are struggling. the battle seems never ending. we feel like we are wandering in the desert and we have no idea how long we are called to be out here. it is so easy to lose hope when there appears to be no end in sight. it is easy to lose hope when you can't feel His peace. i pray everyday for the Holy Spirit to intercede on my behalf. i am weak. i know God's Word reminds me that when i am weak, He is strong.
i'm sure glad someone is...
the feeding problems began for gavin about 4 weeks ago when he began to teethe. as exciting and "typical" as teething is, it presented some problems for gavin. all children develop excess saliva in their mouths as a result of teething; however, for gavin, the saliva caused him to gag a lot. because he was intubated for so long (2 and a half months), he has a condition called esophogeal dismotility. this means that he doesn't always feel the sensation that there is stuff pooling in the back of his throat or slightly down his throat and he won't swallow as often as he should like other children do as an every day reaction to that sensation. so he would gag. the problem with the gagging was that his ng feeding tube goes down his nose and into his stomach and each time he would gag on that excess saliva, he would throw up his ng tube and any food that was in his stomach whether it was a partial or even whole feed. it was so discouraging to us because feeding gavin is already a huge challenge in our household and it is a time that is stressful on us and on gavin. in an instant, 30 minutes of feeding could be wiped clean. so.....gavin wasn't getting the volume that he needed. i had to keep reinserting his ng tube and my poor baby just hates that (do you blame him??). we tried for a period of time to just feed him without the tube in and hoped that he would just take enough volume by bottle (since he is on high calorie formula-30 calorie). but, his lungs can't do that much work. it is too hard for him to eat that much and we see drastic increases in his work of breathing and his oxygen requirements.
after talking with doctors throughout the past week, we have collectively come to the conclusion that the answer to solving this problem is to have a gastric tube (which is also called a g-tube) surgically inserted into his stomach. the surgery will take about an hour to an hour and a half. now, i am well aware that kiddos have surgery every day. i understand that. but kids with lung disease don't. putting gavin on a ventilator seriously compomises him. the process of intubating a kid like gavin is difficult because gavin's lungs will LOVE the break and as "typical" kids are extubated right off a ventilator after surgery, gavin might not be as easy. as many of you, who keep up with our blog have read, it has been a challenge to get gavin to the place we are today. we don't want any setbacks.
jeramy and i are both ready for the g-tube. we know that it is what gavin needs. we know that it will give him the best opportunity to grow and develop without the stress of having to eat. we will still be able to give him bottles which is great for his development. we are looking at it as a short term solution to our problem and we hope and pray that this will not be a long process for him. hopefully, this is exactly what his little lungs need. that way, we can continue to play with him and do more developmental things with him. right now, feedings consume our days and make him so tired that he doesn't have strength for much else.
we are trying to make it until next monday when we have our consult with the surgeon. that means the surgery will likely take place tuesday or wednesday of next week. please pray that between now and then gavin's ng tube can stay in (that is how we are doing all of his feeds to give him a break). pray for skilled hands from the surgeon. pray that the anesthesiologist (who i hear is the best) can possibly do a partial intubation-just to the vocal cords and avoid the ventilator. pray for a fast recovery for our little sweet pea. and please please please pray for me and pray for jeramy. we are struggling. the battle seems never ending. we feel like we are wandering in the desert and we have no idea how long we are called to be out here. it is so easy to lose hope when there appears to be no end in sight. it is easy to lose hope when you can't feel His peace. i pray everyday for the Holy Spirit to intercede on my behalf. i am weak. i know God's Word reminds me that when i am weak, He is strong.
i'm sure glad someone is...
Saturday, November 27, 2010
thanksgiving
so many things to be thankful for this year. i am thankful that i have a little boy that i get to hug and kiss, that i get to tuck him into bed every night, that i get to watch him grow and learn new things, and that God spared his life. i am thankful that i have a wonderful husband to walk through life with. there is not a doubt in my mind that what we have gone through would most definitely break most marriages. jeramy is my angel.
we had a great thanksgiving. we had my parents and sister over to our house, along with jeramy's parents and his brother, josh. unfortunately, we were unable to have his sister, her husband and their precious kids join us because of the risk of possible exposure to gavin but they were missed indeed. we also missed my sister's husband, Ryan who is a firefighter and worked that day :(
i loved hosting thanksgiving. i made my first turkey this year! i brined it for a few days and did a dry rub on it with a variety of herbs and seasonings. so yummy, so tender and juicy! the recipe is a definite keeper...go food network! we had so many yummy things on the menu and i just love going overboard on the decor and with the presentation of everything! :) jeramy knows that if i host something, it is going to be overdone for sure. is there any other way?? ha ha!
it was so nice to have family here at the house and to enjoy gavin at this very fun stage he's in. he talks/babbles a ton! gosh he makes the best noises. we praise Jesus for his progress every single day. of course we had to get him into a cute little thanksgiving outfit! i can't help myself. thank you mom for his onesie...so adorable! here is a picture of the little turkey! :)
we feel so blessed beyond belief. 24 week babies don't survive everyday, let alone with the outcome that gavin has had. no brain bleeds, surgeries, or physical deformaties. he is a miracle and this thanksgiving reminds me of my friends whose precious little babies-some 24 weeks old and some older-didn't survive. i think of each of you everyday. you are always in my prayers.
let's all remember to be thankful for our children this year.......may we never forget how blessed we are.
we had a great thanksgiving. we had my parents and sister over to our house, along with jeramy's parents and his brother, josh. unfortunately, we were unable to have his sister, her husband and their precious kids join us because of the risk of possible exposure to gavin but they were missed indeed. we also missed my sister's husband, Ryan who is a firefighter and worked that day :(
i loved hosting thanksgiving. i made my first turkey this year! i brined it for a few days and did a dry rub on it with a variety of herbs and seasonings. so yummy, so tender and juicy! the recipe is a definite keeper...go food network! we had so many yummy things on the menu and i just love going overboard on the decor and with the presentation of everything! :) jeramy knows that if i host something, it is going to be overdone for sure. is there any other way?? ha ha!
it was so nice to have family here at the house and to enjoy gavin at this very fun stage he's in. he talks/babbles a ton! gosh he makes the best noises. we praise Jesus for his progress every single day. of course we had to get him into a cute little thanksgiving outfit! i can't help myself. thank you mom for his onesie...so adorable! here is a picture of the little turkey! :)
let's all remember to be thankful for our children this year.......may we never forget how blessed we are.
Tuesday, November 23, 2010
gavin!
dude!
mommy and gavin when he was in the picu (not super recent-don't worry)
gavin sleeping
gavin and his aunt christy
gavin and his little tool man outfit
gosh, he's cute.....
another day, another doctor
the past few days have been eventful to say the very least. i mean...for those of you who read our blog regularly, i am certain you are far from shocked. it seems as though the calm always comes right before the he storm. as i said in the last post, gavin's feeding tube was out. yay! well, we had tried taking it out for a bit but he just wasn't getting the volumes that he needed to gain weight so we decided to put it back in. gavin also started teething...which is AWESOME. however, along with the teething comes a lot of excess saliva and since gavin has a tough time sensing that there is stuff in his throat all the time (because he was intubated for so long), he has started gagging randomly when he gets too much of it back there. the only problem is, if he anything in his stomach (formula), it is going to come right up. the tube that goes down his nose and into his stomach doesn't weigh a lot and when he gags, even the slightest, he starts throwing up and then can't stop and ends up throwing up his entire feed. so....that has been happening about once a day (sometimes more). gavin hasn't been gaining weight because of this and he needs to gain weight in order for his lungs to grow and develop. we would love to be able to give gavin all of his volumes by bottle (which we thicken anyway) but he doesn't have the strength to eat that much. he also seems to be getting some oral aversions since he has been throwing up so much lately...poor baby! it just breaks my heart.
we went to see his pulmonologist yesterday and his pediatrician today and we were referred to a great gastroenterologist in scottsdale. we will be meeting with her next week to come up with a different game plan for gavin. right now, we don't know what that is going to be. it could be a simple fix (hopefully) like a different high calorie formula. we already have him on super high calorie formula though. we know it isn't a lactose thing so at least we've ruled that out. another thing she might do is an nd tube instead of an ng tube. an nd tube goes a little deeper and is weighted a bit more and hopefully wouldn't come up as easy as an ng tube. the only problem with that is that placement has to be checked with an xray. i love being able to insert his ng tube and check placement if he needs it. the last thing we need this winter is to be frequenting hospitals around the valley! :) one thing we want to avoid is a gastric tube, which is surgically inserted into his tummy. i just don't think we are to that point quite yet and we definitely want to explore all of our options first.
gavin gets his first synagis shot tomorrow, which is the rsv antibody. we are looking forward to getting some of those under our belt since there have already been cases of rsv in the valley. gavin cannot get rsv. as blunt as this sounds, it could kill him. we ask that you pray against that specifically please.
i will be posting some new pictures of gavin tonight! be sure to check back in!
we went to see his pulmonologist yesterday and his pediatrician today and we were referred to a great gastroenterologist in scottsdale. we will be meeting with her next week to come up with a different game plan for gavin. right now, we don't know what that is going to be. it could be a simple fix (hopefully) like a different high calorie formula. we already have him on super high calorie formula though. we know it isn't a lactose thing so at least we've ruled that out. another thing she might do is an nd tube instead of an ng tube. an nd tube goes a little deeper and is weighted a bit more and hopefully wouldn't come up as easy as an ng tube. the only problem with that is that placement has to be checked with an xray. i love being able to insert his ng tube and check placement if he needs it. the last thing we need this winter is to be frequenting hospitals around the valley! :) one thing we want to avoid is a gastric tube, which is surgically inserted into his tummy. i just don't think we are to that point quite yet and we definitely want to explore all of our options first.
gavin gets his first synagis shot tomorrow, which is the rsv antibody. we are looking forward to getting some of those under our belt since there have already been cases of rsv in the valley. gavin cannot get rsv. as blunt as this sounds, it could kill him. we ask that you pray against that specifically please.
i will be posting some new pictures of gavin tonight! be sure to check back in!
Monday, November 15, 2010
the smell of rain
a wonderful friend of mine emailed this story to me. my friend is also the mommy of a micropreemie. when you read this story, please remember that gavin AND my friend's baby were even tinier than this. gavin was 1 pound 3 ounces. my friend's baby was 1 pound 2 ounces. miracles happen everyday. our little boys are living proof of that. this mom's story about her little girl is so touching. i hope to hear Gavin say something like this one day because there is not a doubt in my mind that God was with him when we couldn't be....
The Smell of Rain
A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon on March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.
Still, the doctor's soft words dropped like bombs." I don't think she's going to make it," he said, as kindly as he could." There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would probably never walk, she would possibly never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on. 'No! No!' was all Diana could say.
She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangled tubes and wires, was to pray that God would stay close to their precious little girl.
There was never one specific moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.
Five years later, when Dana was a petite but feisty young girl with glittering gray eyes, she had an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.
One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."
Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.
one day i overheard jeramy talking to gavin. he said, "gavin, what does He look like? what does Jesus look like? i bet you've seen Him, haven't you?" jeramy said this to gavin with tears streaming down his face and i will always remember that moment. we always prayed for Him to hold gavin in His arms when we couldn't, when we weren't able to even touch him. i know He did. and i know that gavin felt it.
we love you all so much. gavin is doing well. he weighs 14 pounds and currently has NO feeding tube! yay!! please pray that he can continue to take his volumes and put on weight so we can keep it out. also, please pray for g's health during this cold/flu season. pray that we stay out of the hospital and that we ALL stay healthy!
blessings,
The Smell of Rain
A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon on March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.
Still, the doctor's soft words dropped like bombs." I don't think she's going to make it," he said, as kindly as he could." There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would probably never walk, she would possibly never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on. 'No! No!' was all Diana could say.
She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangled tubes and wires, was to pray that God would stay close to their precious little girl.
There was never one specific moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.
Five years later, when Dana was a petite but feisty young girl with glittering gray eyes, she had an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.
One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."
Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.
one day i overheard jeramy talking to gavin. he said, "gavin, what does He look like? what does Jesus look like? i bet you've seen Him, haven't you?" jeramy said this to gavin with tears streaming down his face and i will always remember that moment. we always prayed for Him to hold gavin in His arms when we couldn't, when we weren't able to even touch him. i know He did. and i know that gavin felt it.
we love you all so much. gavin is doing well. he weighs 14 pounds and currently has NO feeding tube! yay!! please pray that he can continue to take his volumes and put on weight so we can keep it out. also, please pray for g's health during this cold/flu season. pray that we stay out of the hospital and that we ALL stay healthy!
blessings,
Friday, October 29, 2010
point of view
yay!! gavin qualified for ddd (developmental disability). this means that g will be receiving services in our home instead of having to travel to them. these services include physical therapy, speech therapy (they work on feeding goals), and we also get a developmental service coordinator. these three people will come to our house both separately and sometimes together to work with gavin. that's three hours of services each week! praise God! i am so confident that gavin will continue to make progress as we move forward! he's such a rock star. at our meeting on monday, i received a packet of papers for gavin. if there's one thing i have discovered in this process, it's paperwork, paperwork, paperwork......oh, and PHONECALLS! I have taken on a "browse" type approach to the what i deem the "unnecessary fillers" in each of the packets we receive. however, one paper caught my attention this week. it was titled, "welcome to holland". for all of you wondering what it has been like mourning the loss of what "we had originally planned" for ourselves, this article written by a parent in our shoes perfectly depicts what it is like. because as i sit here today......our life is perfect.........just as He had planned it to be.
Welcome to Holland
By: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with special needs-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, its like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum, Michelangelo's 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'll 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 must meet a whole new group of people you never would 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 awhile and you catch your breath, you look around and you begin to notice that Holland has a lot to offer. 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 in your head, "Yes.....I know how great Italy is. I had planned to go there too."
And the pain of that will never, ever, ever, ever go away.......because the loss of that dream is a VERY significant loss. But.......if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very wonderful things.......about Holland.
i just loved that!!! i think it is a great picture of where i am at, personally. gavin is a miracle.....nothing short of it. there is not a doubt in my mind that he will continue to get stronger and stronger. i have faith in a very big God to get us there. however, i know that the road to getting him there is a long one. it is a road that is filled with appointments, therapies, and possible surgeries. my job as his mommy is to do EVERYTHING i can to get as much support for him! the earlier the better! that's exactly what we are doing. and we will continue to do it.....
we, as always appreciate your prayers. and honestly........i ask sincererly for sensitivity. we have very fragile moments. this has been a very tough time for us. although we LOVE our son more than words could ever describe and although we have grown accustomed to this "way of life", we are still mourning the loss of what many consider as "typical" and "normal". thank you for loving on us during our sad days and rejoicing with us during the happy ones. lately, there have been more happy ones. i'd say that's a pretty good thing :)
all my love,
ps. the boys taking a snooze...
Welcome to Holland
By: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with special needs-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, its like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum, Michelangelo's 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'll 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 must meet a whole new group of people you never would 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 awhile and you catch your breath, you look around and you begin to notice that Holland has a lot to offer. 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 in your head, "Yes.....I know how great Italy is. I had planned to go there too."
And the pain of that will never, ever, ever, ever go away.......because the loss of that dream is a VERY significant loss. But.......if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very wonderful things.......about Holland.
i just loved that!!! i think it is a great picture of where i am at, personally. gavin is a miracle.....nothing short of it. there is not a doubt in my mind that he will continue to get stronger and stronger. i have faith in a very big God to get us there. however, i know that the road to getting him there is a long one. it is a road that is filled with appointments, therapies, and possible surgeries. my job as his mommy is to do EVERYTHING i can to get as much support for him! the earlier the better! that's exactly what we are doing. and we will continue to do it.....
we, as always appreciate your prayers. and honestly........i ask sincererly for sensitivity. we have very fragile moments. this has been a very tough time for us. although we LOVE our son more than words could ever describe and although we have grown accustomed to this "way of life", we are still mourning the loss of what many consider as "typical" and "normal". thank you for loving on us during our sad days and rejoicing with us during the happy ones. lately, there have been more happy ones. i'd say that's a pretty good thing :)
all my love,
ps. the boys taking a snooze...
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