sunday fun day? unfortunately, not this Easter sunday. gavin began to get sick on saturday night. tracee and i listened to him moan and groan all night off and on. it's a horrible feeling as a parent when they are too little to talk and also too little to really give many medicines to. in times like that you just have to grind it out. well, we were all up at the crack of dawn on Easter sunday - praising the Lord for conquering the grave (amen) and also praying for a quick healing of whatever was bothering gavin. it became evident that gavin was having a run in with a stomach virus as he threw up his entire bottle just before heading to church. thankfully, he did great during the church service at bethany bible church. it was awesome to finally get to church as a family and to be able to do it on Easter. kent delhousaye preached a wonderful service on the fulfillment of all of the prophecies given about Jesus and how it is not scientifically possible to duplicate what He did. moreover, the fact that Christianity provides a way to God through faith in His son Jesus - there is no working your way to salvation. it is by grace that we were saved, not of our own doing but of God's. it is a gift.
for all of the mistakes i make i'm sure glad to know that i'm saved from my sins through my faith and not by a list of works i have to attain.
we made it through church and had tracee's family join us for brunch. that didn't go so well. gavin was miserable the whole afternoon and just couldn't get comfortable. everything we fed him was coming right back up. we were set to go to my sister's house to meet up with my side of the family for a late aternoon meal but we had to cancel. :-(
by monday afternoon tracee and i were both sick. i headed home early from work with horrible stomach cramps and tracee was feeling the same way. i had my folks come over to keep an eye on gavin for a few hours just so tracee and i could lay still! we were both throwing up at this point and things were getting rough. we prayed that gavin would sleep through the night and thankfully he did. tracee and i on the other hand did not. i spent most of the night around the toilet praying for mercy. i called my dr. and had them call a prescription in for me which really helped calm things down for us. g was still having a hard time fighting through this bug so we were concerned about his dehydration.we kept pumping pedialyte through his g tube as much as he would tolerate. the nurse told us "if he doesn't pee by 1pm bring him in." we knew what that would mean. they had already told us that there wasn't much they could do for him with a stomach virus other than refer us on to the hospital to get IV fluids if he was dehydrated. you all know how we feel about the hospital and that's the last place we wanted to take gavin. we decided to give him a bath to help him feel better and hopefully lay down to take a nap. it was almost 1pm. i stripped off his diaper and sure enough it was wet! (it really is the little miracles in our life that we cling to these days)
late yesterday afternoon he began to take bottles again - 1oz at a time and he was slamming them down and i'm not even exagerating. he was hungry! the food stayed down so we were able to get him several bottles before bed. today he has been on a 3oz bottle schedule and keeping them down so that is great news. both tracee and i are sore and recovering from this nasty virus. stomach flu is the worst.
i weighed gavin this morning and he has lost about 1/2 pound due to this illness. we have had to go up on his oxygen from 1/8 liter to 1/2. that's not the direction we want to go but understand that when he gets sick and his body gets stressed that those things will happen.
the next 3 months are going to be really critical for gavin's development. all of his therapies and support physicians are really wanting to see him make a lot of improvements. we do too. a lot of the things gavin is doing are at the age of a 5 - 6 month old. it makes sense to us. he was born 4 months early and then spent his first 2 months of life heavily sedated and not really in a position to do anything but lay there. that is 6 months of time that he didn't have to be growing and developing like a full term baby would coming into this world. we ask that you continue to pray for complete healing in every area of gavin's life. also, please pray for us as we battle this out everyday too. it is hard and it takes its toll. we have a hard time sometimes seeing what God is doing. i'll keep saying it but we are ready for a break. we want some rest and relaxation and we want gavin to be able to start experiencing life off of his back and sitting up and enjoying his toys from a new perspective.
we love you all - thanks for your support!
jeramy
Wednesday, April 27, 2011
Sunday, April 17, 2011
gavin turned 1! april is busy...
first and foremost, i want to thank each and every one of you who participated in gavin's birthday in one form or another! it was a beautiful celebration. the sun was shining last sunday afternoon and the air was cool and crisp. we woke up to not a cloud in the sky after a very cold and dreary saturday - it only got up to the high 40's i think with quite a bit of rain! once again, God is so good to us and blessed us with a beautiful day to celebrate. the theme of his party was "carnival" so we did EVERYTHING we could to make it a carnival! i'm so thankful for such a creative and talented wife. tracee was very busy for weeks in preparation of gavin's party. well...everything came together beautifully! we had a hotdog cart to serve hotdogs to our guests as well as a popcorn machine, beautiful cake pops that tracee made, and a number of magnificent sugary treats for all the kiddos to nibble on! tracee had little paddle balls for the kids to color and take home and call their own as well as a sack race that the kids could partake in. all in all, it was beautiful and perfect! around 3:30 or so we got to doing gavin's smash cake. he definitely wasn't sure about that but both tracee and i helped him as he tried to figure out what to do. we first tried him in his high chair but he just wasn't having it. he still has a lot of difficulty sitting up in that thing and with everyone gathered around and singing to him and laughing, etc. it scared him. :-)
we moved him to the grass and helped him "dig in" to his cake. that was a lot of fun for us and i'm sure for him too!
as gavin's party wrapped up, tracee sent each of the kids home with their own little parting gift. there was a message from gavin attached to each of them that said something like "thanks so much for coming to my party..." i don't know for sure because, truth be told, i can be horrible with paying attention to little details like that! (my bad.)
after we completed most of the cleanup, the family sat around and began to unwrap and break out all of gavin's toys and goodies he received. oh my gosh! gavin is truly loved and supported - our play room here at the house (our living room converted) looks like a mini toys r us - we are so excited for all of those toys and to watch is development improve as he gets a chance to play with them. thank you to everyone! it was really great to have my grandma von in town from northern california to be here for his birthday. it was also especially fun to have tracee's nanny and her aunt kelly and kids with us. for her aunt kelly and her kids, it was their first time meeting gavin. as a matter of fact, for a lot of people it was their first time meeting gavin. he has been so critical and so under wraps for so long that his birthday celebration was finally the opportunity to really expose him to all of our friends and family. FINALLY!! we are so excited to be able to begin to do more normal things again and visit with friends and their kids, etc. RSV is such a scary respiratory virus that is so prevalent during the winter months and with gavin's lung disease, it could have been fatal for him to contract it. obviously, it made us live like a recluse family but we are over that now!
along those lines of "getting out" and living amongst society again - i have to say that it's been hard for us. here is where the vulnerable and candid part of the post comes in. tracee and i have had a difficult time when we begin to see where other babies are at. naturally, we are at that age where most of our friends are starting families too and so we are now beginning to see these babies interact and the level of their development. i know that for us it creates a lot of different thoughts and emotions. i think the strongest emotion for both of us is fear. we fear what gavin's long term outlook will be and it becomes so difficult to stay in the moment and focus on the here and now. as a parent you want the absolute best for your baby. tracee and i would and will do anything and everything possible to give gavin the best we can - to give him the best opportunities to succeed and develop. but, in this journey of ours, there are so many things that are out of our control that aren't up to us. i don't know if i have ever wanted something so bad as to have gavin gain the core strength he needs to sit and play and begin to crawl, etc. i just know that he would begin to experience life in a different way and it would really propel him to a new level of development because he would be seeing everything differently. but, as i said, it's not up to us. we do his physical therapy every week and tracee works with him a ton - he sees his developmental specialist and everyone pitches in to help gavin along.
where are you in this process God? even Jesus in his final and darkest hour asked "my God, my God, why have you forsaken me?" have you ever felt that way? i certainly know that if Jesus had that kind of thought and expressed that kind of emotion that it's a-okay for us to do the same. we serve a big God who can handle that and clearly has us in His hand and has a plan for us.
nonetheless, things are hard. life continues to drag us through some difficult things. i have found that most people can endure things when they have a time table on how long it will be for. with us, it has been and continues to be open-ended. that is really hard, i'm not gonna lie. i pray with such fervency for God to heal gavin on the spot! my heart is broken for the Lord to intercede and for complete healing to take place for gavin. i've never wanted something more. i've cried so many times out of my heart's desire for gavin to experience life the way all of these other kids around him are. tracee and i are just a couple of people trying to be faithful and striving to follow the Lord in all of this.
i'm a desperate man. i am. i've heard that the definition of insanity is doing the same thing over and over again yet expecting different results. i guess i'm insane. i keep praying over and over again - trying the same things with gavin over and over again - and expecting different results! i don't want lose that perseverence.
the truth is that we are stuck. we are stuck in a really hard place in life. we have been seeing a wonderful counselor who has been helping us to navigate through some of this stuff and that has been our saving grace in so many moments. in a session the other day it was mentioned "i bet if we scanned your brains right now we would see a lot of post traumatic stress disorder going on." no doubt that is happening to us. throw that in with a tough economy and uncertainties in that area of our life and it leaves us stuck. we feel hopeless at times. that feeling sucks. i'm not sure what to even ask for right now. so many of you have been so faithful to us - it has helped so much. there's not much pride in this season of our lives to keep us from asking for help and direction and prayers and support on all levels.
if God leads you in a particular situation with our family - I ask that you listen to that leading and share it with us. See...for us, it's through those things that help us see God at work and experience Him beside us in this. it's why i cry when i read the responses on the blog or when we get cards or messages of encouragement, etc. it feels good to know that we aren't alone.
jeramy
as gavin's party wrapped up, tracee sent each of the kids home with their own little parting gift. there was a message from gavin attached to each of them that said something like "thanks so much for coming to my party..." i don't know for sure because, truth be told, i can be horrible with paying attention to little details like that! (my bad.)
after we completed most of the cleanup, the family sat around and began to unwrap and break out all of gavin's toys and goodies he received. oh my gosh! gavin is truly loved and supported - our play room here at the house (our living room converted) looks like a mini toys r us - we are so excited for all of those toys and to watch is development improve as he gets a chance to play with them. thank you to everyone! it was really great to have my grandma von in town from northern california to be here for his birthday. it was also especially fun to have tracee's nanny and her aunt kelly and kids with us. for her aunt kelly and her kids, it was their first time meeting gavin. as a matter of fact, for a lot of people it was their first time meeting gavin. he has been so critical and so under wraps for so long that his birthday celebration was finally the opportunity to really expose him to all of our friends and family. FINALLY!! we are so excited to be able to begin to do more normal things again and visit with friends and their kids, etc. RSV is such a scary respiratory virus that is so prevalent during the winter months and with gavin's lung disease, it could have been fatal for him to contract it. obviously, it made us live like a recluse family but we are over that now!
along those lines of "getting out" and living amongst society again - i have to say that it's been hard for us. here is where the vulnerable and candid part of the post comes in. tracee and i have had a difficult time when we begin to see where other babies are at. naturally, we are at that age where most of our friends are starting families too and so we are now beginning to see these babies interact and the level of their development. i know that for us it creates a lot of different thoughts and emotions. i think the strongest emotion for both of us is fear. we fear what gavin's long term outlook will be and it becomes so difficult to stay in the moment and focus on the here and now. as a parent you want the absolute best for your baby. tracee and i would and will do anything and everything possible to give gavin the best we can - to give him the best opportunities to succeed and develop. but, in this journey of ours, there are so many things that are out of our control that aren't up to us. i don't know if i have ever wanted something so bad as to have gavin gain the core strength he needs to sit and play and begin to crawl, etc. i just know that he would begin to experience life in a different way and it would really propel him to a new level of development because he would be seeing everything differently. but, as i said, it's not up to us. we do his physical therapy every week and tracee works with him a ton - he sees his developmental specialist and everyone pitches in to help gavin along.
where are you in this process God? even Jesus in his final and darkest hour asked "my God, my God, why have you forsaken me?" have you ever felt that way? i certainly know that if Jesus had that kind of thought and expressed that kind of emotion that it's a-okay for us to do the same. we serve a big God who can handle that and clearly has us in His hand and has a plan for us.
nonetheless, things are hard. life continues to drag us through some difficult things. i have found that most people can endure things when they have a time table on how long it will be for. with us, it has been and continues to be open-ended. that is really hard, i'm not gonna lie. i pray with such fervency for God to heal gavin on the spot! my heart is broken for the Lord to intercede and for complete healing to take place for gavin. i've never wanted something more. i've cried so many times out of my heart's desire for gavin to experience life the way all of these other kids around him are. tracee and i are just a couple of people trying to be faithful and striving to follow the Lord in all of this.
i'm a desperate man. i am. i've heard that the definition of insanity is doing the same thing over and over again yet expecting different results. i guess i'm insane. i keep praying over and over again - trying the same things with gavin over and over again - and expecting different results! i don't want lose that perseverence.
the truth is that we are stuck. we are stuck in a really hard place in life. we have been seeing a wonderful counselor who has been helping us to navigate through some of this stuff and that has been our saving grace in so many moments. in a session the other day it was mentioned "i bet if we scanned your brains right now we would see a lot of post traumatic stress disorder going on." no doubt that is happening to us. throw that in with a tough economy and uncertainties in that area of our life and it leaves us stuck. we feel hopeless at times. that feeling sucks. i'm not sure what to even ask for right now. so many of you have been so faithful to us - it has helped so much. there's not much pride in this season of our lives to keep us from asking for help and direction and prayers and support on all levels.
if God leads you in a particular situation with our family - I ask that you listen to that leading and share it with us. See...for us, it's through those things that help us see God at work and experience Him beside us in this. it's why i cry when i read the responses on the blog or when we get cards or messages of encouragement, etc. it feels good to know that we aren't alone.
jeramy
Monday, March 28, 2011
a year in review
on a monday 1 year ago tracee was admitted to the hospital indefinitely as we hoped and prayed that we could keep our baby boy gavin inside as long as humanly possible. tracee's ongoing diagnosis of her pregnancy problems at the perinatologist office located across the street from the hospital finally came to an urgent conclusion: you and your baby are at risk. we need to get you under constant medical supervision.
i think that both tracee and i thought we would be there a while but certainly not with the birth of our son right on our heels. i mean, she was only 26 weeks along - or so we thought. the whole preeclampsia thing was certainly a frustration and a nuisance as it was keeping tracee completely bed ridden. as we consulted with various doctors, it became more apparent that gavin was going to come sooner rather than later. tracee's body wasn't responding well to this pregnancy. i remember the saturday night before she gave birth (April 3rd) with her blood pressure at 220/110 and sicker than a dog on magnesium sulfate - that was rough. it looked like that might be the night to bring gavin into this world. we prayed hard that it wouldn't be as tracee's OB was out of town for Easter and wouldn't be back until monday. we didn't want to do this without her there! thank God, things settled down and we celebrated Easter in her hospital room with family visits and more meds to control the preeclampsia.
monday rolled around and it was pretty apparent to one of the perinatologists that it was time to get that baby out of there. tracee was battling. she was fighting hard for our unborn son to get as much time in the womb as utterly possible. the call came in from her OB that we would be having a baby later that day. he was set for delivery some time around 7 i think. i could see tracee's condition worsening. i knew the timing of this was essential. several hours before delivery, tracee sat me on the bed and said to me "my body is shutting down." now, if you know my wife that means something. she is a fighter and is one of the toughest people i know. she sensed her life was on the line and i remember feeling the severity of the situation: i could lose both my wife and child.
well....here we are just about a year later. 51 monday's ago gavin was born. it's true what they say - you don't know what you don't know. tracee and i have come to know a lot more than we had hoped or imagined we would. certainly none of it by choice, this wasn't our plan, it was God's. we had a much different plan in mind. we expected to deliver a baby about the same time as my sister did and that those two little boys would grow up within weeks of each other, sharing in every developmental monument along the way, together. but, as you have all witnessed and we have lived, we continue to plug along in our journey of giving birth to, and now raising a micro-preemie.
i have fears. i know tracee has fears. the one thing i have found true in this whole experience has been that there is always a new challenge to encounter and always something new to endure. as the parent of a micro-preemie, i've clung to the success stories and the development paths of others who have endured this same journey. the thing is that gavin is not them and his set of circumstances is very different than any other kiddo we have crossed paths with.
i'll speak for myself: i need your prayers. i need God's miraculous hand to step in and save the day. gavin is still on oxygen. we seem to be moving in the right direction as he grows and develops but it could still be a while before he is completely off. i can't even begin to tell you how much i wan't him off of oxygen. up until about 2 weeks ago, gavin was having a horrible time with reflux. we would spend hours feeding him to have something gag him and then have it all come back up. i remember one day in particular where i fed him 14 ounces to only have 12 ounces end up on me and the couch and him and you get the picture. very frustrating!! he is now taking prevacid and zantac which is helping a ton. please pray for his eating and for his ability to keep his food down and to continue to GROW and DEVELOP. keep praying for gavin's eyes. right now his eye doctor just wants to take a look at him every few months to monitor things, but please PRAY that God would make all things new and all things corrected if there are any issues with his vision!
lastly is his low muscle tone. gavin continues to get physical therapy and early intervention activities with a developmental specialist. he has been making progress but as he is getting older i can see how frustrating it is for him at times to try and do the 'normal' baby stuff. rolling over is extremely hard. lifting his arms up to push his head off the ground is almost impossible right now. he can sit in a supported position with pillows and his boppy, but trying to sit on his own - we aren't there yet. this low muscle tone is a big question mark right now. there are so many potential things that can cause it, but nothing that we are aware of pertaining to gavin. please PRAY that God would intervene and deliver core strength to our son. PRAY that God would heal gavin's body in every way possible and that he would be able to function as a happy, healthy little boy. my heart aches for the desire i have for complete healing for my son. i can't begin to even describe the longing i have for restoration for gavin. maybe i just need to remain patient.
i'm not gonna lie. life has been tough for the past few years. even before gavin we went through some difficult circumstances and continue to struggle with the economy and changes to my industry. there are a lot of times where i just want to tap out - send the white flag up the pole - give in and give up. but...the Lord then shows me:
join us in petitioning for God's grace and mercy on us and on our precious boy gavin james:
love, jeramy
i think that both tracee and i thought we would be there a while but certainly not with the birth of our son right on our heels. i mean, she was only 26 weeks along - or so we thought. the whole preeclampsia thing was certainly a frustration and a nuisance as it was keeping tracee completely bed ridden. as we consulted with various doctors, it became more apparent that gavin was going to come sooner rather than later. tracee's body wasn't responding well to this pregnancy. i remember the saturday night before she gave birth (April 3rd) with her blood pressure at 220/110 and sicker than a dog on magnesium sulfate - that was rough. it looked like that might be the night to bring gavin into this world. we prayed hard that it wouldn't be as tracee's OB was out of town for Easter and wouldn't be back until monday. we didn't want to do this without her there! thank God, things settled down and we celebrated Easter in her hospital room with family visits and more meds to control the preeclampsia.
monday rolled around and it was pretty apparent to one of the perinatologists that it was time to get that baby out of there. tracee was battling. she was fighting hard for our unborn son to get as much time in the womb as utterly possible. the call came in from her OB that we would be having a baby later that day. he was set for delivery some time around 7 i think. i could see tracee's condition worsening. i knew the timing of this was essential. several hours before delivery, tracee sat me on the bed and said to me "my body is shutting down." now, if you know my wife that means something. she is a fighter and is one of the toughest people i know. she sensed her life was on the line and i remember feeling the severity of the situation: i could lose both my wife and child.
well....here we are just about a year later. 51 monday's ago gavin was born. it's true what they say - you don't know what you don't know. tracee and i have come to know a lot more than we had hoped or imagined we would. certainly none of it by choice, this wasn't our plan, it was God's. we had a much different plan in mind. we expected to deliver a baby about the same time as my sister did and that those two little boys would grow up within weeks of each other, sharing in every developmental monument along the way, together. but, as you have all witnessed and we have lived, we continue to plug along in our journey of giving birth to, and now raising a micro-preemie.
i have fears. i know tracee has fears. the one thing i have found true in this whole experience has been that there is always a new challenge to encounter and always something new to endure. as the parent of a micro-preemie, i've clung to the success stories and the development paths of others who have endured this same journey. the thing is that gavin is not them and his set of circumstances is very different than any other kiddo we have crossed paths with.
i'll speak for myself: i need your prayers. i need God's miraculous hand to step in and save the day. gavin is still on oxygen. we seem to be moving in the right direction as he grows and develops but it could still be a while before he is completely off. i can't even begin to tell you how much i wan't him off of oxygen. up until about 2 weeks ago, gavin was having a horrible time with reflux. we would spend hours feeding him to have something gag him and then have it all come back up. i remember one day in particular where i fed him 14 ounces to only have 12 ounces end up on me and the couch and him and you get the picture. very frustrating!! he is now taking prevacid and zantac which is helping a ton. please pray for his eating and for his ability to keep his food down and to continue to GROW and DEVELOP. keep praying for gavin's eyes. right now his eye doctor just wants to take a look at him every few months to monitor things, but please PRAY that God would make all things new and all things corrected if there are any issues with his vision!
lastly is his low muscle tone. gavin continues to get physical therapy and early intervention activities with a developmental specialist. he has been making progress but as he is getting older i can see how frustrating it is for him at times to try and do the 'normal' baby stuff. rolling over is extremely hard. lifting his arms up to push his head off the ground is almost impossible right now. he can sit in a supported position with pillows and his boppy, but trying to sit on his own - we aren't there yet. this low muscle tone is a big question mark right now. there are so many potential things that can cause it, but nothing that we are aware of pertaining to gavin. please PRAY that God would intervene and deliver core strength to our son. PRAY that God would heal gavin's body in every way possible and that he would be able to function as a happy, healthy little boy. my heart aches for the desire i have for complete healing for my son. i can't begin to even describe the longing i have for restoration for gavin. maybe i just need to remain patient.
Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:28-31.
i'm not gonna lie. life has been tough for the past few years. even before gavin we went through some difficult circumstances and continue to struggle with the economy and changes to my industry. there are a lot of times where i just want to tap out - send the white flag up the pole - give in and give up. but...the Lord then shows me:
where can i go from your Spirit? where can i flee from your presence? if i go up to the heavens, you are there; if i make my bed in the depths, you are there. if i rise on the wings of the dawn, if i settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. Psalm 139:7-10nevertheless, i'm ready for this season to be over. please please pray for us and think of us. please pray for healing. pray for our finances and for our ability to handle what we have been given. please pray for our marriage and the strengthening of our relationship.
join us in petitioning for God's grace and mercy on us and on our precious boy gavin james:
love, jeramy
Monday, February 21, 2011
good report!
hey there - i just realized it has been over a month for us since we posted last. i think with all of the emotional as well as physical stress we have experienced over the past 10 months, we have just desired to "take a break" whenever we can.
gavin was admitted to the hospital on february 8th for an overnight stay due to dehydration and a possible bowel obstruction. our heat went out during the coldest week of the year - yes, of course, something like that would happen to us. luckily, my parents took us in for about 5 days while i was trying to get the heat resolved. just to give you an idea: it was 46 degrees in our house one morning when i came back to take a shower and get ready for work. we ended up getting a whole new unit and it's been a completely different home since then! well...during our stay at my folks, gavin began to get bad stomach pains. he wasn't eating very well and he was throwing up almost everything we were putting down him. we tried pedialyte through his tube and even that wasn't working to keep him hydrated so we had to make some decisions. tracee was able to get a direct admit through our pediatrician so we could avoid the ER. this was a HUGE answer to prayer as RSV is in full affect right now. once again, that is the last thing gavin needs as it could shut him down and kill him.
once into the PICU, gavin had an IV put in and a series of tests run (uppper GI, tummy xray) and all of them came back negative. thank you God! he was released on februrary 9th after a successful feed. we determined that he has been struggling with reflux so we need to maintain the thickening of his foods. things have been fantastic since he has been home - he is doing so well! he saw his pulmonologist while in the hospital and gavin has dropped to .5ml of prednisalone every other day from being on .5ml everyday. he is still on less than .5 liter of oxygen - these are steps in the right direction!
gavin has been laughing more these days (tracee found a great tickle spot on the back of his hips and he LOVES it!)
since our last post he has seen his pediatric eye doctor twice to check on what appeared to be a crossing of his eyes. over the past month we have been having him wear an eye patch once a day for 30 minutes. he hates it...longest 30 minutes of our day! we visited the doctor again this morning and are pleased to report that we are holding off on the patching and will follow up again in 2 months after gavin turns one. he said that "gavin's eyes look the best they've looked." we like to hear that!
he is now up to 16.5 pounds and we have decreased his formula to 24Cal from 27Cal - all steps that gavin is taking to catch up. please continue to pray for us and for him. we don't want anymore surprises! financially things have been tough for us with settling on his medical bills and then dealing with new trips to the hospital and a car that needed $1450 worth of repairs. due to gavin's need for his Synagis shot to protect him against RSV, we have been paying $713 per month for COBRA insurance to keep he and tracee covered. we have 2 more months of that before we can look into some other solutions but until RSV season is over we are held hostage.
we know God provides as he has shown us time and again. thank you for keeping up with us friends and family! all of the other life "stuff" pales in comparison to how well gavin is doing and we are so thankful for his life. he is a miracle, our miracle. i love to have days like today where i get to spend all day with him. he is screaming and talking on the floor right now as i write this. i wish you could see my smile.
with love,
jeramy
gavin was admitted to the hospital on february 8th for an overnight stay due to dehydration and a possible bowel obstruction. our heat went out during the coldest week of the year - yes, of course, something like that would happen to us. luckily, my parents took us in for about 5 days while i was trying to get the heat resolved. just to give you an idea: it was 46 degrees in our house one morning when i came back to take a shower and get ready for work. we ended up getting a whole new unit and it's been a completely different home since then! well...during our stay at my folks, gavin began to get bad stomach pains. he wasn't eating very well and he was throwing up almost everything we were putting down him. we tried pedialyte through his tube and even that wasn't working to keep him hydrated so we had to make some decisions. tracee was able to get a direct admit through our pediatrician so we could avoid the ER. this was a HUGE answer to prayer as RSV is in full affect right now. once again, that is the last thing gavin needs as it could shut him down and kill him.
once into the PICU, gavin had an IV put in and a series of tests run (uppper GI, tummy xray) and all of them came back negative. thank you God! he was released on februrary 9th after a successful feed. we determined that he has been struggling with reflux so we need to maintain the thickening of his foods. things have been fantastic since he has been home - he is doing so well! he saw his pulmonologist while in the hospital and gavin has dropped to .5ml of prednisalone every other day from being on .5ml everyday. he is still on less than .5 liter of oxygen - these are steps in the right direction!
gavin has been laughing more these days (tracee found a great tickle spot on the back of his hips and he LOVES it!)
since our last post he has seen his pediatric eye doctor twice to check on what appeared to be a crossing of his eyes. over the past month we have been having him wear an eye patch once a day for 30 minutes. he hates it...longest 30 minutes of our day! we visited the doctor again this morning and are pleased to report that we are holding off on the patching and will follow up again in 2 months after gavin turns one. he said that "gavin's eyes look the best they've looked." we like to hear that!
he is now up to 16.5 pounds and we have decreased his formula to 24Cal from 27Cal - all steps that gavin is taking to catch up. please continue to pray for us and for him. we don't want anymore surprises! financially things have been tough for us with settling on his medical bills and then dealing with new trips to the hospital and a car that needed $1450 worth of repairs. due to gavin's need for his Synagis shot to protect him against RSV, we have been paying $713 per month for COBRA insurance to keep he and tracee covered. we have 2 more months of that before we can look into some other solutions but until RSV season is over we are held hostage.
we know God provides as he has shown us time and again. thank you for keeping up with us friends and family! all of the other life "stuff" pales in comparison to how well gavin is doing and we are so thankful for his life. he is a miracle, our miracle. i love to have days like today where i get to spend all day with him. he is screaming and talking on the floor right now as i write this. i wish you could see my smile.
with love,
jeramy
Sunday, January 16, 2011
extra! extra!
gavin is doing so good lately with the amount of oxygen that he is requiring. if you remember, he was discharged from the nicu on one liter of oxygen (continuous flow). at times, he was anywhere from one and a half liters to two liters. as of today, he fluctuates between just a quarter of a liter and a half of a liter. this is such tremendous progress for him and we are so pleased to report it. also, we have been able to wean down a bit on his prednisalone (his steroid).
in addition to the wonderful progress with his lungs, we are super pleased to report that gavin is also taking full feeds occasionally. there are days we don't have to use his gastric tube, with the exception of using it for his meds. having the gastric tube has really helped get rid of the oral aversion problems that we were facing with g. he doesn't necessarily "love" to eat yet....we're still working on that. but......he's eating. and THAT makes us very happy.
enjoy your sunday....thank you for continuing to keep us in your prayers. they are working. i hope everyone can see that!
blessings,
in addition to the wonderful progress with his lungs, we are super pleased to report that gavin is also taking full feeds occasionally. there are days we don't have to use his gastric tube, with the exception of using it for his meds. having the gastric tube has really helped get rid of the oral aversion problems that we were facing with g. he doesn't necessarily "love" to eat yet....we're still working on that. but......he's eating. and THAT makes us very happy.
enjoy your sunday....thank you for continuing to keep us in your prayers. they are working. i hope everyone can see that!
Wednesday, January 12, 2011
new year. new outlook
every year, millions of people approach the new year in one of two ways. one, they either become nostalgic-thinking back on all the wonderful things that happened in their life in the past year, OR two, they are so elated to see the passing of the previous year, focusing all of their attention on the year to come-hoping it will be anything but what they experienced in the past 365 days. i don't know how your 2010 was, but for me, i originally wanted absolutely nothing to do with it. my heartache in the last year overshadowed the happiness....and there was happiness. i was just too hurt to see it.
the biggest thing i have personally dealt with is the feeling of abandonment. that word may seem quite deep and a bit extreme. believe me, it is. but i felt it. i have never before been to the point that this journey has taken me to. at times, i didn't know how to handle it. i felt more isolated than the word "alone" does justice describing. even amidst the support of my husband, family and friends, I FELT ABANDONED. thankfully, i have a personal relationship with Jesus Christ; however, even with that relationship, i still struggled a ton. why was it that i felt abandoned by a God who is always with me? i really wrestled with that.
one thing about my journey over the past 9 months is that i changed a ton. i changed the moment i gave birth to that little boy. with gavin in such critical care, i began to take his life into my own hands. i watched skilled nurses and doctors save his life every single day. i learned how they did it. i listened and i asked questions because i refused to sit there while people talked about my child and not understand what their words meant. so yes, in some ways, i became very much like a nurse.
parents of typical children go about their day trusting that God will keep their kiddos breathing. but i watched machines breathe for gavin for months. and even now, i watch machines provide oxygen to him. and people control those machines. i didn't know how to balance that. i didn't know how to trust gavin's life to Him while doctors, nurses, respiratory therapists and even myself had SO much control over his outcome. it became exhausting to me. i couldn't sleep, i couldn't even think about anything else. it consumed me. and THAT is when i started to feel abandoned.
now, i am sure as an onlooker, the solution and answer is obvious to you. but it wasn't to me. when you are in the midst of a crisis, nothing is obvious. i see now how God is not only in the picture, but He IS the picture. gavin wouldn't even be here if God didn't have an ultimate plan for him. and gavin's life is HIS job, not mine. my job is to raise that boy to know Jesus. i am not supposed to have His job. it is exhausting for a reason. it isn't meant to be done by imperfect people.
originally, i did think about leaving 2010 behind without looking back twice. but that wouldn't be a good idea at all. God taught me a lot this year and it would be foolish of me to move past it having learned nothing-having not reflected at all. so....i will take it with me into 2011 and learn from it. i will constantly remind myself not to take gavin's life into my own hands (because i will forget) and i will remind myself that i am not alone and i will remember that in the times that i felt like i was.....He was right there with me.
i hope that you all have a wonderful year and if you had a rough 2010, i sincerely hope that you can find something to reflect on too....you never know how it can help shape your 2011.
all my love,
the biggest thing i have personally dealt with is the feeling of abandonment. that word may seem quite deep and a bit extreme. believe me, it is. but i felt it. i have never before been to the point that this journey has taken me to. at times, i didn't know how to handle it. i felt more isolated than the word "alone" does justice describing. even amidst the support of my husband, family and friends, I FELT ABANDONED. thankfully, i have a personal relationship with Jesus Christ; however, even with that relationship, i still struggled a ton. why was it that i felt abandoned by a God who is always with me? i really wrestled with that.
one thing about my journey over the past 9 months is that i changed a ton. i changed the moment i gave birth to that little boy. with gavin in such critical care, i began to take his life into my own hands. i watched skilled nurses and doctors save his life every single day. i learned how they did it. i listened and i asked questions because i refused to sit there while people talked about my child and not understand what their words meant. so yes, in some ways, i became very much like a nurse.
parents of typical children go about their day trusting that God will keep their kiddos breathing. but i watched machines breathe for gavin for months. and even now, i watch machines provide oxygen to him. and people control those machines. i didn't know how to balance that. i didn't know how to trust gavin's life to Him while doctors, nurses, respiratory therapists and even myself had SO much control over his outcome. it became exhausting to me. i couldn't sleep, i couldn't even think about anything else. it consumed me. and THAT is when i started to feel abandoned.
now, i am sure as an onlooker, the solution and answer is obvious to you. but it wasn't to me. when you are in the midst of a crisis, nothing is obvious. i see now how God is not only in the picture, but He IS the picture. gavin wouldn't even be here if God didn't have an ultimate plan for him. and gavin's life is HIS job, not mine. my job is to raise that boy to know Jesus. i am not supposed to have His job. it is exhausting for a reason. it isn't meant to be done by imperfect people.
originally, i did think about leaving 2010 behind without looking back twice. but that wouldn't be a good idea at all. God taught me a lot this year and it would be foolish of me to move past it having learned nothing-having not reflected at all. so....i will take it with me into 2011 and learn from it. i will constantly remind myself not to take gavin's life into my own hands (because i will forget) and i will remind myself that i am not alone and i will remember that in the times that i felt like i was.....He was right there with me.
i hope that you all have a wonderful year and if you had a rough 2010, i sincerely hope that you can find something to reflect on too....you never know how it can help shape your 2011.
all my love,
Saturday, December 25, 2010
merry christmas!
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
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
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!
Subscribe to:
Posts (Atom)
