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...

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.

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!

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,