yesterday they adjusted gavin's birth age to 24.4 weeks as to what they think he actually was when born on april 5th. i think they probably waited until 30 days of life to make the adjustment so we could feel a little better about ourselves thinking we had given birth to a 26.6 week old baby boy. gavin continues to show amazing signs based on this new revelation.
he is teetering on the 2 pound mark between yesterday and today. he continues to tolerate his feeds and is up to about 9 ml's of food every 3 hours. i'm not sure about you but i think i'd be pretty full after a big meal like that. with the help of his 3rd round of steroids he is improving on his oxygen needs and on his ventilator settings. he will continue to get weened on steroids for another week as to not make the mistake of bringing him off too soon. as we always mention there are always risks to the steroids and to the potential effects of neurological issues and IQ point losses. please pray that his brain and body will continue to be protected!
he received his 30 day head ultrasound yesterday and the prelim report showed a grade 1 brain bleed. these ultrasounds are graded on a scale of 0 to 4 with zero being nothing and 4 being the worst. a 1 revealed that he shows signs of some veins in the brain that, through stress, have bled out a bit. we are told and reassured that this is very common in preemies and that a lot of times these just absorb into the body with no long term effects. you know how to pray people! pray that there would be no long term effects and that his head would grow at a normal rate. he gets a head circumference done every week and his head should grow by a .5cm a week. so far, he is perfectly normal on his head growth and his head looks perfect to us. they will continue to measure to make sure that it doesn't grow bigger than it should as that would be an alarm to the fact that there is blood on the brain. we trust you Lord for healing!
it looks like tracee will get a chance to hold him on mommy's day this sunday. please pray that this will happen and all will go well and that it will be a perfect and special day for us.
these days, even when he begins to do "well" i have a hard time feeling peaceful about that. i have been dealing with this stuff for over 7 weeks now (3 before tracee gave birth and was on bed rest and then hospital) and it appears we have another 12 weeks or so in the NICU. thank you for continuing to lift us up when there feels like there is nothing left in the tank.
really dwell on the understanding that gavin is a true miracle. when i look at him he really and truly looks perfect - just micro. i know this economy is difficult and our governments are in disarray and our finances have been hit hard and the sky is falling and on and on...but gavin creates the need to stop and dwell and really think about what is important. have you done that lately? have you done that today? my grandparents always counseled me about feelings. every single one of the "worldly" things i just mentioned above will cause us to "feel" something about them. my grandparents used to say "YOU make me so mad isn't an appropriate statement. nobody can make you feel anything, it's rather a choice you have to make." rather, don't give the power to somebody else or to the world or to that circumstance. own your feelings. you can say "i feel mad when..." or "i feel sad when..." and i think i bring all of this up because gavin serves as a barometer for what feelings are really appropriate and what is actually really important. gavin is teaching us how to live better lives and how to be better husbands and wives and boyfriends and girlfriends and sisters and brothers and employees and employers, and of course, better mommy's and daddy's. get your bracelet and allow that to serve as that reminder of what order you have your priorities lined up in this life.
thank you faithful followers!
PS - please post from where you all are following from across this country and the world so we can be encouraged by that. :-)
jeramy
Thursday, May 6, 2010
Tuesday, May 4, 2010
go gavin go
hi there!
my mother in law decided that it would be a good idea to make up these bracelets in honor of our son gavin and his fight as he progresses in the NICU.
just before gavin's arrival, we were told about Cord Blood Registry and what they do - especially for babies who are high risk. we chose to have his cord blood and cord tissue stored with the largest facility in the world that is located in tucson, arizona. one of the wonderful things they do is offer a gift registry to expectant parents who decide to have their child's cord blood stored that people can donate to directly. well, we ran into a glitch. CBR allows this registry to be open and available to people up until their child is born. since gavin came so quickly and 3.5 months before he was due, we just weren't prepared. we had no way to allow people to donate as it was cut off the day he was born. no matter what, we are excited to know that we were able to store 126 million cells from a 1 pound 3 ounce baby. the average collection is 500 million from a full term 7/8 pound baby - so we did great! of course, we pray that we never have to use those cells but they have been proven to be effective in dealing with over 70 different potential complications that could arise.
rather than do a car wash to raise money for his upcoming medical bills, CBR and any unforeseen surgeries, etc., we wanted to offer these cool bracelets as a way for people to donate to him and to then wear it as a reminder to think and pray for him.
As you can see from the pictures, it says “Go Gavin Go.” I filled it in with a black pen – so it doesn’t actually stand out like that, so you won’t be drawing crazy attention to your wrist! On the other side it has a scripture reference: Jer. 29:11.
we have them in 2 sizes: adult and kids/women’s.
we’d like to offer them up in exchange for donations. feel free to grab a bracelet and donate directly with tracee and i or you can send an email to mknikolin@cox.net and karen can give you instructions on how to send a self addressed envelope to receive your bracelet(s). If you feel more comfortable, we have established an account at Wells Fargo on behalf of gavin. the name of the account is the "Gavin Williams Benefit Donation Account" and can be referenced at any Wells Fargo branch and you can donate directly and privately. if you go that route and need to receive a bracelet or two, both tracee and i usually have some on us.
please let us know if you would like to share with us in this long journey!
also, please don’t feel obligated whatsoever! If you just want a bracelet to support us that way, that is fine too. we want people to wear them in support and to look down and to remember to pray for gavin and the plan for his life. speaking of plans..."for I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
we trust this for gavin's life!
if any of this doesn't make any sense or you have any questions about this, please get in touch with us and let us know! go gavin go!!
my mother in law decided that it would be a good idea to make up these bracelets in honor of our son gavin and his fight as he progresses in the NICU.
just before gavin's arrival, we were told about Cord Blood Registry and what they do - especially for babies who are high risk. we chose to have his cord blood and cord tissue stored with the largest facility in the world that is located in tucson, arizona. one of the wonderful things they do is offer a gift registry to expectant parents who decide to have their child's cord blood stored that people can donate to directly. well, we ran into a glitch. CBR allows this registry to be open and available to people up until their child is born. since gavin came so quickly and 3.5 months before he was due, we just weren't prepared. we had no way to allow people to donate as it was cut off the day he was born. no matter what, we are excited to know that we were able to store 126 million cells from a 1 pound 3 ounce baby. the average collection is 500 million from a full term 7/8 pound baby - so we did great! of course, we pray that we never have to use those cells but they have been proven to be effective in dealing with over 70 different potential complications that could arise.
rather than do a car wash to raise money for his upcoming medical bills, CBR and any unforeseen surgeries, etc., we wanted to offer these cool bracelets as a way for people to donate to him and to then wear it as a reminder to think and pray for him.
As you can see from the pictures, it says “Go Gavin Go.” I filled it in with a black pen – so it doesn’t actually stand out like that, so you won’t be drawing crazy attention to your wrist! On the other side it has a scripture reference: Jer. 29:11.
we have them in 2 sizes: adult and kids/women’s.
we’d like to offer them up in exchange for donations. feel free to grab a bracelet and donate directly with tracee and i or you can send an email to mknikolin@cox.net and karen can give you instructions on how to send a self addressed envelope to receive your bracelet(s). If you feel more comfortable, we have established an account at Wells Fargo on behalf of gavin. the name of the account is the "Gavin Williams Benefit Donation Account" and can be referenced at any Wells Fargo branch and you can donate directly and privately. if you go that route and need to receive a bracelet or two, both tracee and i usually have some on us.
please let us know if you would like to share with us in this long journey!
also, please don’t feel obligated whatsoever! If you just want a bracelet to support us that way, that is fine too. we want people to wear them in support and to look down and to remember to pray for gavin and the plan for his life. speaking of plans..."for I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
we trust this for gavin's life!
if any of this doesn't make any sense or you have any questions about this, please get in touch with us and let us know! go gavin go!!
Monday, May 3, 2010
just another manic monday
gavin had to me moved back to the oscillator last night about 10pm. they were having to increase his pressures to a point where it was becoming unsafe for his lungs. imagine a balloon that is inflated over and over and a little bit bigger each time - it looses some of it's elasticity. that's what they don't want to have happen with gavin's lungs. for us we have noticed a pattern. he started on the vent on low settings and then slowly increased on his settings to the point of needing the oscillator. now that he's on the oscillator, their goal is to keep him on low settings and keep him stable so they can continue to grow him, but our fear and concern is that he will need to continue to go up on his requirements on the oscillator. please God, hear our prayers and the prayers of others to spare us from going down this road again. we have already been here and they were some of the scariest days of our lives.
i am so tired. i know that tracee is worn down to the bone. i'm not much of a surfer but i always wanted to be. i'm looking to catch that really great wave and then ride it for a bit - have it carry me to shore - carry me to safety. i'm trying not to let my heart be troubled. i'm trying to cling to God's promises and to be a good leader for my family. i continue to cry out for my son.
as i visited him this morning he was just all over the place on his settings. the nurse practitioner mumbled about the idea of going back on steroids again. they are checking his heart by doing an echo to check on his PDA valve that is open in all preemie babies just to see if that is playing any interference into things with his lungs. if he has to be on the oscillator then we are fine with that - but we need him to be stable there!!
Please: this is a call to action, once again, to pray for gavin and for his stability and for ours as well. he is 4 weeks old today and tomorrow he will be (on paper) 31 weeks.
i would be lying to you all if i said i didn't hate this. time is an interesting thing. in some regards time heals things, it grows things, it improves things. in other regards, it erodes things, it evaporates things, it prolongs things, it batters things. tracee and i know that gavin's time in the NICU is long. we have come to understand that and embrace it. but to continue to go through anguishing cycles over and over are the places in time that get to be too much. i want off this rollercoaster, but the name of this ride is "gavin's life" and so there's no way i'm getting off.
i choose to dig deep and to focus on what i know to be true but i certainly don't understand right now.
thanks for meeting me where i'm at right now.
Jeramy
i am so tired. i know that tracee is worn down to the bone. i'm not much of a surfer but i always wanted to be. i'm looking to catch that really great wave and then ride it for a bit - have it carry me to shore - carry me to safety. i'm trying not to let my heart be troubled. i'm trying to cling to God's promises and to be a good leader for my family. i continue to cry out for my son.
as i visited him this morning he was just all over the place on his settings. the nurse practitioner mumbled about the idea of going back on steroids again. they are checking his heart by doing an echo to check on his PDA valve that is open in all preemie babies just to see if that is playing any interference into things with his lungs. if he has to be on the oscillator then we are fine with that - but we need him to be stable there!!
Please: this is a call to action, once again, to pray for gavin and for his stability and for ours as well. he is 4 weeks old today and tomorrow he will be (on paper) 31 weeks.
i would be lying to you all if i said i didn't hate this. time is an interesting thing. in some regards time heals things, it grows things, it improves things. in other regards, it erodes things, it evaporates things, it prolongs things, it batters things. tracee and i know that gavin's time in the NICU is long. we have come to understand that and embrace it. but to continue to go through anguishing cycles over and over are the places in time that get to be too much. i want off this rollercoaster, but the name of this ride is "gavin's life" and so there's no way i'm getting off.
i choose to dig deep and to focus on what i know to be true but i certainly don't understand right now.
thanks for meeting me where i'm at right now.
Jeramy
Saturday, May 1, 2010
this too shall pass: an update
if you have been following the blog then you know about and have probably read our post about my night to the Suns game and how the reoccuring them for that day had been "this too shall pass." I had said in that post that with God there are no such thing as coincidences. we stand firm on that. this blog, and our journey with gavin continue to bring us stories of God's workings in our lives and just how things happen for a reason, even if in the midst we don't understand.
tracee came home the other day and said "do you remember that girl's tattoo from the Suns game? well, a friend of mine knows her - it's her good friend!" tracee proceeded to read me the email and this is what is said:
we can't make this stuff up! you always hear people say things like "what a small world." it's not a small world. it's actually a very big world, but when you run in certain circles, or you believe in a God who ordains things and places people where they need to be when they need to be there, then you get things like this that happen.
i hope that you all find this as cool and encouraging as we have! gavin is 26 days old today and has taken a little step back on his progress but we trust and remain calm and know that these things will happen.
continue to pray for the strenght of his lungs and that he will tolerate his feedings as they attempt to get him up to "full feeds" over the next week or so. it's what he needs to really grow. oh yeah, also pray for him to sleep soundly as that deep sleep really helps him grow too.
may each and every one of you be blessed richly in your lives as you join with us in prayers and support for gavin and the williams family. thank you!
jeramy
tracee came home the other day and said "do you remember that girl's tattoo from the Suns game? well, a friend of mine knows her - it's her good friend!" tracee proceeded to read me the email and this is what is said:
Hey Tracee,
I just wanted to write and say that I have been following your blog and keeping you and your family in my prayers. I was just catching up on the last couple of blogs and saw the craziest thing! That girl who your husband took a picture of her tattoo at the Suns game is a really good friend of mine and I was with her when she got that tattoo in December, small world. I told her about the blog and the picture and she was so happy that your husband saw this and felt some sort of peace from it. Her name is actually Nicole and she was a roommate of Mia in college. So, anyways your prayer circle just got bigger. I wish you and your family the best and will continue to pray for you all.
Love,
Nicole
we can't make this stuff up! you always hear people say things like "what a small world." it's not a small world. it's actually a very big world, but when you run in certain circles, or you believe in a God who ordains things and places people where they need to be when they need to be there, then you get things like this that happen.
i hope that you all find this as cool and encouraging as we have! gavin is 26 days old today and has taken a little step back on his progress but we trust and remain calm and know that these things will happen.
continue to pray for the strenght of his lungs and that he will tolerate his feedings as they attempt to get him up to "full feeds" over the next week or so. it's what he needs to really grow. oh yeah, also pray for him to sleep soundly as that deep sleep really helps him grow too.
may each and every one of you be blessed richly in your lives as you join with us in prayers and support for gavin and the williams family. thank you!
jeramy
Wednesday, April 28, 2010
a tiny glimpse
yesterday was a big day. everything started out great. gavin was a doing really well when i got there in the morning. i knew in the back of my head that if he had good blood gases and remained stable on c pap, i would get to hold him at 2:00 during his touch time (this would be my first time holding him). everything seemed to be going well with all of his stuff, except his blood gas, where his carbon dioxide levels were a lot higher than the doctors wanted. i knew that another blood gas was coming just before 2:00 and i had such high hopes that he would stabilize. aside from the reason of wanting to hold him, i wanted him to stabilize because he seemed so much more comfortable when he was extubated. he was able to lay on his tummy and his side and they took him off of the majority of the sedatives he was on, which also told me that he was more comfortable. well, around 1:00, he began desatting rather quickly. we knew that this was a possibility since he came off the steroids the night before. they had him at 100% oxygen and he was still desatting. i knew instantly that his little body just became too tired to keep breathing all by himself. it all happened so fast and my emotions definitely got the best of me. surprisingly, holding him was the last thing on my mind...all i could think about was him needing to be intebated once again and how bad i felt for him. i was so proud of my little guy for pushing so hard for 3 days all by himself. everyone was shocked he made it that long too! one of the neonatologists and nurse practitioners reintubated him, but had a hard time getting the size 3 tube in because he was swollen from the suctioning that they were doing trying to keep him on c pap if they could. amidst trying to intubate him, they needed to bag him in order to give his lungs enough air. that is, by far, the hardest thing to watch as a parent. the doctor ended up intubating him with a 2.5 sized tube. we could all still hear gavin making little squeaks around the tube, so he knew that once the swelling went down, he would need to reintubate him with a size 3. they gave gavin some sedation to calm him during this process and he was now stabilized. our nurse practitioner told me that i could still hold him while he was intubated. i was ecstatic!! i immediately called jeramy to have him come down to the hospital so he could be there to share the moment with me.
they do what is called kangaroo care, where they place the baby directly on the mother's chest. it is really good for the baby and it is really good for the mom too :) they got me situated in the recliner and transferred him from his incubator to my chest. they tucked him right inside my shirt. at first, i was really nervous because of all of the cords he has attached to him, as well as the tube in his mouth. i didn't want to move anything. right when i felt him, though, all of those anxieties immediately went away. jeramy got there right at that time, which was perfect! lindsay and his nurse got everything taped down where it wouldn't move and got his sats back up (when micro preemies transfer from their incubators to their moms/dads it is quite the ordeal). after about 5 minutes, jeramy and i got to enjoy some alone time with our son. the lights were off, the curtain was pulled and we were able to get a couple short videos of our time spent with him. i knew that gavin was small...one pound 9 ounces isn't huge after all. but once i had him on my chest, he felt even smaller and more fragile than i could have ever imagined. it was the most amazing feeling ever. he did so good...he was super calm and was so still. however, his tube had quite a large leak in it though, because it was too small, and as the swelling went down, he began desatting rather quickly. after about 10 minutes of kangaroo care, the nurse and nurse practitioner came in and i knew instantly that our time was done. they called quickly for the doctor to come to his pod and the nurse practitioner began bagging him while he was on my chest. he wasn't getting enough air in his lungs from the tube, or the bag, so they moved him in a VERY quick and scary way from my chest to his bed. instantly, people were all around him. they continued bagging him until the doctor came and reintubated him with a size 3 tube. jeramy and i cried a lot in the hall of the NICU, after what was a very scary and emotional experience. watching things change as quickly as they did was terrifying. we decided that, once they got gavin situated and stable, we would head home. it was a very rough day, but i caught a tiny glimpse of what it will be like when i can hold him for longer periods of time. depending on how he is doing, we should be able to hold him for an hour, every other day or two. we can't wait...
oh...and look how tiny his little hand is. that should give you a pretty good idea just how tiny this little guy really is...
i got to the hospital today and heard that they had to reintubate him once again because his tube was too high. it truly is never ending and a little bit of my heart breaks each time i hear about things that happen to him. we trust these nurses and doctors so much with our son though and i am so thankful for each and every one of them. today, however, i hit a breaking point. maybe it was everything that happened yesterday or my lack of sleep last night from having continual, detailed nightmares about what happened yesterday that i just couldn't escape from...i don't know. but i needed to come home and sleep or at least try to sleep.
please pray for us. every day is a struggle. every day we cry. every day we feel like we reach a point where we can't do it anymore. thankfully, however, in the moments where we feel like we really can't do it anymore, God gives us just enough strength for one more day. so pray for strength....we need it.
they do what is called kangaroo care, where they place the baby directly on the mother's chest. it is really good for the baby and it is really good for the mom too :) they got me situated in the recliner and transferred him from his incubator to my chest. they tucked him right inside my shirt. at first, i was really nervous because of all of the cords he has attached to him, as well as the tube in his mouth. i didn't want to move anything. right when i felt him, though, all of those anxieties immediately went away. jeramy got there right at that time, which was perfect! lindsay and his nurse got everything taped down where it wouldn't move and got his sats back up (when micro preemies transfer from their incubators to their moms/dads it is quite the ordeal). after about 5 minutes, jeramy and i got to enjoy some alone time with our son. the lights were off, the curtain was pulled and we were able to get a couple short videos of our time spent with him. i knew that gavin was small...one pound 9 ounces isn't huge after all. but once i had him on my chest, he felt even smaller and more fragile than i could have ever imagined. it was the most amazing feeling ever. he did so good...he was super calm and was so still. however, his tube had quite a large leak in it though, because it was too small, and as the swelling went down, he began desatting rather quickly. after about 10 minutes of kangaroo care, the nurse and nurse practitioner came in and i knew instantly that our time was done. they called quickly for the doctor to come to his pod and the nurse practitioner began bagging him while he was on my chest. he wasn't getting enough air in his lungs from the tube, or the bag, so they moved him in a VERY quick and scary way from my chest to his bed. instantly, people were all around him. they continued bagging him until the doctor came and reintubated him with a size 3 tube. jeramy and i cried a lot in the hall of the NICU, after what was a very scary and emotional experience. watching things change as quickly as they did was terrifying. we decided that, once they got gavin situated and stable, we would head home. it was a very rough day, but i caught a tiny glimpse of what it will be like when i can hold him for longer periods of time. depending on how he is doing, we should be able to hold him for an hour, every other day or two. we can't wait...
oh...and look how tiny his little hand is. that should give you a pretty good idea just how tiny this little guy really is...
i got to the hospital today and heard that they had to reintubate him once again because his tube was too high. it truly is never ending and a little bit of my heart breaks each time i hear about things that happen to him. we trust these nurses and doctors so much with our son though and i am so thankful for each and every one of them. today, however, i hit a breaking point. maybe it was everything that happened yesterday or my lack of sleep last night from having continual, detailed nightmares about what happened yesterday that i just couldn't escape from...i don't know. but i needed to come home and sleep or at least try to sleep.
please pray for us. every day is a struggle. every day we cry. every day we feel like we reach a point where we can't do it anymore. thankfully, however, in the moments where we feel like we really can't do it anymore, God gives us just enough strength for one more day. so pray for strength....we need it.
Saturday, April 24, 2010
leaps and bounds
as you are all well aware, life in the nicu is all about living minute to minute. everything can and does change so fast. well, it appears to be doing just that...at least for now :)
gavin is the little mystery of the nicu! even though my doctors calculated my due date for july 6th, there has been a lot of debate about that date. the perinatologists, as well as the staff in the nicu believe that my date was more around the 18th. based on that, gavin was actually born at a little more than 24 weeks gestation. this also corresponds with how he looked when he was born based on his size, his eyes, his weight, his lung development, etc. at this point, no one knows, but they don't really use his "gestational age" in the nicu because they do not believe it is accurate. this makes him even more of a miracle!
on tuesday, gavin opened his eyes for the first time!!! i was so thrilled that i got to be there for that. it was so funny because at first he only opened his left one. his right one was still a little fused. by the end of the day, though, he was opening and closing both eyes! every time i see it, i feel more and more connected to him. the connection piece is so important to me because my head knows that i'm a mommy, but my heart doesn't yet...i can't explain how that feels exactly. there is nothing in my house at all, except an empty green room, that reminds me that i'm a mom. but i think i'm supposed to just "know" that i'm a mom. when i get in the car, there's no car seat, no crying. but i'm just supposed to "know" that i'm a mom. i carry my diaper bag to the hospital every day, but it just has my journal and a water bottle in it. but, again, i'm just supposed to "know" i'm a mom. the only place i go where i actually FEEL like a mom is right next to his bed. man, i can sit there all day. people always ask me if the days go by slow, or if i get bored. no way! see, all i can do to be a mom right now is to sit there. i don't know how to do anything else for him. if i'm lucky and if he's stable, i sometimes get to place my hand on him. if i'm really lucky, i get to help the nurse change his diaper or even wipe his little mouth. but that's it. so, i LIVE for those precious moments and i couldn't imagine being anywhere else. i wouldn't know how to be anywhere else. it's weird, because our house looks and feels the same it did before we got pregnant, yet we know that something has changed. we have a son now but do we really "have" him? no. we don't. amidst the uncertainty, i place all confidence in the Lord that, one day, we will have him and our house will feel different......i will feel different.....
jeramy and i knew from day one that a huge goal for gavin would be moving from the oscillator to the ventilator. since everything that had happened last saturday, we were told that this wouldn't probably be happening for some time. so, when the doctor came in yesterday and told me that he wants to look at moving gavin to the regular ventilator, i thought, "well, yeah...in due time that sounds like a plan to me too!" he stood there for awhile talking about gavin's sats to one of the nurse practitioners and i became increasingly interested in what they were talking about. i overheard him say, "go ahead and get the respiratory therapists and we'll make the switch". i stood up and said, "now? you're gonna switch him now??" i was in such a state of shock, i couldn't believe it. i called jeramy and he was in just as much shock as i was. we began praying and asking people to pray that his little lungs and body would be able to withstand the change and would be able to maintain proper oxygen levels. we didn't want to switch back to the oscillator (which was/is a possibility). the switch went so smoothly and he responded wonderfully!
today, we woke up and, as our everyday routine, we went to the hospital. as i was signing us in at the counter in the nicu, i looked into his pod and noticed something very different. since i am in that pod all day, every day, i notice any change whatsoever. today, i noticed a change. the ventilator was turned off. what a bummer. my heart sank immediately and the first thought that came to my head was, "man, they had to put him back on the oscillator". however, as i looked closer, i noticed that the oscillator was nowhere to be seen. my eyes focused in on this new machine...a machine i hadn't seen before. all of these thoughts happened so fast in my head and jeramy was already in his pod talking to his nurse. as i walked toward his room, the thought came to my mind..."c pap?" right as i thought it, i heard jeramy say, "he's on c pap!!" for those of you who are not familiar with that word, that means that he is not intubated anymore!!! i couldn't believe it. after all, it was just yesterday that they decided to switch him to a regular ventilator. as it turns out, they started the c pap last night around 10:00. it has been almost 24 hours and he is still holding his own on it. this means that gavin is doing a ton of the work right now. he is able to breathe on his own with a little assistance. he has this little mask on and he even gets to lay on his tummy! when he was intubated, they couldn't move him very much so this makes me so happy because i imagine that he is so much more comfortable! so, it got me thinking, "what is this ventilator still doing here by his bed??" well, as is common in the nicu (especially with micro-preemies), they oftentimes will switch babies to a new machine as a "trial" and usually have to go back to their old machines once or even more in order for their lungs to mature/develop more. so...there is this table with all of the medical equipment neccessary to re-intubate our child, if need be. it is laid out in such an organized fashion that terrifies me. i do not want him back on those machines. i do not want him intebated. there is nothing worse than seeing your child in what i can only imagine is a very overwhelming and scary state. also, when he is intubated, they have to give him more sedation. i hate that part too. my heart wants him to be off as many things possible, especially the things that can cause long term side effects. when we left the hospital this evening, they were keeping a very close eye on him and even turned the ventilator back on at one point, as it looked like they were going to reintubate him. but...he pulled through that little rough patch and i plead with you for your prayers...
gavin is the little mystery of the nicu! even though my doctors calculated my due date for july 6th, there has been a lot of debate about that date. the perinatologists, as well as the staff in the nicu believe that my date was more around the 18th. based on that, gavin was actually born at a little more than 24 weeks gestation. this also corresponds with how he looked when he was born based on his size, his eyes, his weight, his lung development, etc. at this point, no one knows, but they don't really use his "gestational age" in the nicu because they do not believe it is accurate. this makes him even more of a miracle!
on tuesday, gavin opened his eyes for the first time!!! i was so thrilled that i got to be there for that. it was so funny because at first he only opened his left one. his right one was still a little fused. by the end of the day, though, he was opening and closing both eyes! every time i see it, i feel more and more connected to him. the connection piece is so important to me because my head knows that i'm a mommy, but my heart doesn't yet...i can't explain how that feels exactly. there is nothing in my house at all, except an empty green room, that reminds me that i'm a mom. but i think i'm supposed to just "know" that i'm a mom. when i get in the car, there's no car seat, no crying. but i'm just supposed to "know" that i'm a mom. i carry my diaper bag to the hospital every day, but it just has my journal and a water bottle in it. but, again, i'm just supposed to "know" i'm a mom. the only place i go where i actually FEEL like a mom is right next to his bed. man, i can sit there all day. people always ask me if the days go by slow, or if i get bored. no way! see, all i can do to be a mom right now is to sit there. i don't know how to do anything else for him. if i'm lucky and if he's stable, i sometimes get to place my hand on him. if i'm really lucky, i get to help the nurse change his diaper or even wipe his little mouth. but that's it. so, i LIVE for those precious moments and i couldn't imagine being anywhere else. i wouldn't know how to be anywhere else. it's weird, because our house looks and feels the same it did before we got pregnant, yet we know that something has changed. we have a son now but do we really "have" him? no. we don't. amidst the uncertainty, i place all confidence in the Lord that, one day, we will have him and our house will feel different......i will feel different.....
jeramy and i knew from day one that a huge goal for gavin would be moving from the oscillator to the ventilator. since everything that had happened last saturday, we were told that this wouldn't probably be happening for some time. so, when the doctor came in yesterday and told me that he wants to look at moving gavin to the regular ventilator, i thought, "well, yeah...in due time that sounds like a plan to me too!" he stood there for awhile talking about gavin's sats to one of the nurse practitioners and i became increasingly interested in what they were talking about. i overheard him say, "go ahead and get the respiratory therapists and we'll make the switch". i stood up and said, "now? you're gonna switch him now??" i was in such a state of shock, i couldn't believe it. i called jeramy and he was in just as much shock as i was. we began praying and asking people to pray that his little lungs and body would be able to withstand the change and would be able to maintain proper oxygen levels. we didn't want to switch back to the oscillator (which was/is a possibility). the switch went so smoothly and he responded wonderfully!
today, we woke up and, as our everyday routine, we went to the hospital. as i was signing us in at the counter in the nicu, i looked into his pod and noticed something very different. since i am in that pod all day, every day, i notice any change whatsoever. today, i noticed a change. the ventilator was turned off. what a bummer. my heart sank immediately and the first thought that came to my head was, "man, they had to put him back on the oscillator". however, as i looked closer, i noticed that the oscillator was nowhere to be seen. my eyes focused in on this new machine...a machine i hadn't seen before. all of these thoughts happened so fast in my head and jeramy was already in his pod talking to his nurse. as i walked toward his room, the thought came to my mind..."c pap?" right as i thought it, i heard jeramy say, "he's on c pap!!" for those of you who are not familiar with that word, that means that he is not intubated anymore!!! i couldn't believe it. after all, it was just yesterday that they decided to switch him to a regular ventilator. as it turns out, they started the c pap last night around 10:00. it has been almost 24 hours and he is still holding his own on it. this means that gavin is doing a ton of the work right now. he is able to breathe on his own with a little assistance. he has this little mask on and he even gets to lay on his tummy! when he was intubated, they couldn't move him very much so this makes me so happy because i imagine that he is so much more comfortable! so, it got me thinking, "what is this ventilator still doing here by his bed??" well, as is common in the nicu (especially with micro-preemies), they oftentimes will switch babies to a new machine as a "trial" and usually have to go back to their old machines once or even more in order for their lungs to mature/develop more. so...there is this table with all of the medical equipment neccessary to re-intubate our child, if need be. it is laid out in such an organized fashion that terrifies me. i do not want him back on those machines. i do not want him intebated. there is nothing worse than seeing your child in what i can only imagine is a very overwhelming and scary state. also, when he is intubated, they have to give him more sedation. i hate that part too. my heart wants him to be off as many things possible, especially the things that can cause long term side effects. when we left the hospital this evening, they were keeping a very close eye on him and even turned the ventilator back on at one point, as it looked like they were going to reintubate him. but...he pulled through that little rough patch and i plead with you for your prayers...
- please pray specifically for gavin that he can maintain on his own while on the sipap
- please pray for his lungs. although he has made the switch from ventilator to ventilator over the past 2 days, his lungs are still the same that they were, he is just getting stronger so, right now, he has strength to take breaths. so, pray for continued strength.
- as gavin comes off the second round of steroids, he will need even more strength and maintenance with his breathing and it becomes a bigger risk of him going back to the ventilators.
- also, while he is on c pap and is not intebated, we can do kangaroo care, which means i can hold him. we aren't there yet as they want to see him stabilize on the c pap....but we're so close i can almost feel him. please pray he can maintain. i long so much to hold my little boy and i feel like i'm almost there......
Wednesday, April 21, 2010
this too shall pass
so things have been up and down. more down than up in this turbulent time of life with a child in the NICU, but God continues to sustain us. i try to remember to take each day, not even day by day anymore, but more 5 minutes at a time. in difficult times, life seems to be much more managable when you approach it in those increments. i love reading the posts on facebook and the continued commitment to pray for us and for gavin. one particular comment on tracee's page came from one of her teacher friends that i loved reading. she told us that she just kept having this reoccuring theme: this too shall pass.
it was so timely for tracee and i, and a fantastic reminder of the cyclical nature of life. there are peaks and valleys. there are extreme highs and devastating lows. for most of our marriage, we have experienced some real adversity. you might be thinking "most of their marriage? they haven't even been married that long!" and you are correct! we have experienced several hospital stays, a house move, a job change for me, financial difficulties and of course; an ongoing trauma with our first child...all in the past 10 months. counselors say that any one of these things can be huge stressors in life and we've had em all. So, due to the cyclical nature of life, we are anticipating that year 2 will be phenomenal!
ok, so as i was meditating sunday afternoon on what tracee and i have gone through over our short but never-a-dull-moment marriage, i came back to that wonderful reminder that this too shall pass.
i had tickets with some guys at work to go to the suns first playoff game on sunday night, so i made the determination that i should go and try and get some normalcy back. so i headed to the game. as we got settled in, i noticed that there was no one sitting in front of me. i didn't think much about it, other than i thought it was great that at a playoff game that should be completely sold out - no one was there to block my view. as the game went on and the suns struggled i started to people watch a bit. i happened to notice a girl 2 rows in front of me with a tattoo across her shoulders. it said something but i couldn't make it out as her hair was covering most of it. as the game progressed, i began to see that the first word said "this" and then that the last word became visible as "pass".
ok, i'm real intrigued now. i honestly don't think i could tell you much of what the 3rd quarter looked like as i attempted to decode the rest of this tattoo. i became pretty convinced as her hair would move from side to side that this girl's message to me said: this too shall pass. sure enough, it did. i couldn't believe it! of all the people who could sit 2 rows in front of me in a huge arena, this girl does. in a sold out game, nobody sat in front of me so that i could see this girl's back. at this point i was texting tracee to tell her what was happening, but i really wanted a good picture of the whole thing so i could show her and encourage her but her hair was in the way and had been the whole game. as i pulled my phone out to take the best picture i could, she reached her hand around her head and pulled her hair in front of her shoulder; out of the way. it was amazing. here it is...
God delivered a message to me using these 2 women. there is no such thing as a coincidence. God is good. He knew i needed to hear and see that. God may not speak audibly as in the Old Testament times, but He certainly spoke through these circumstances. i hope you find this as encouraging as we did!
jeramy
it was so timely for tracee and i, and a fantastic reminder of the cyclical nature of life. there are peaks and valleys. there are extreme highs and devastating lows. for most of our marriage, we have experienced some real adversity. you might be thinking "most of their marriage? they haven't even been married that long!" and you are correct! we have experienced several hospital stays, a house move, a job change for me, financial difficulties and of course; an ongoing trauma with our first child...all in the past 10 months. counselors say that any one of these things can be huge stressors in life and we've had em all. So, due to the cyclical nature of life, we are anticipating that year 2 will be phenomenal!
ok, so as i was meditating sunday afternoon on what tracee and i have gone through over our short but never-a-dull-moment marriage, i came back to that wonderful reminder that this too shall pass.
i had tickets with some guys at work to go to the suns first playoff game on sunday night, so i made the determination that i should go and try and get some normalcy back. so i headed to the game. as we got settled in, i noticed that there was no one sitting in front of me. i didn't think much about it, other than i thought it was great that at a playoff game that should be completely sold out - no one was there to block my view. as the game went on and the suns struggled i started to people watch a bit. i happened to notice a girl 2 rows in front of me with a tattoo across her shoulders. it said something but i couldn't make it out as her hair was covering most of it. as the game progressed, i began to see that the first word said "this" and then that the last word became visible as "pass".
ok, i'm real intrigued now. i honestly don't think i could tell you much of what the 3rd quarter looked like as i attempted to decode the rest of this tattoo. i became pretty convinced as her hair would move from side to side that this girl's message to me said: this too shall pass. sure enough, it did. i couldn't believe it! of all the people who could sit 2 rows in front of me in a huge arena, this girl does. in a sold out game, nobody sat in front of me so that i could see this girl's back. at this point i was texting tracee to tell her what was happening, but i really wanted a good picture of the whole thing so i could show her and encourage her but her hair was in the way and had been the whole game. as i pulled my phone out to take the best picture i could, she reached her hand around her head and pulled her hair in front of her shoulder; out of the way. it was amazing. here it is...
God delivered a message to me using these 2 women. there is no such thing as a coincidence. God is good. He knew i needed to hear and see that. God may not speak audibly as in the Old Testament times, but He certainly spoke through these circumstances. i hope you find this as encouraging as we did!
jeramy
Sunday, April 18, 2010
pushed to the edge
let me start with the good news: tracee's headaches are much improved and she is slowly on a better path to recovery. she is still real tired and wiped out from much activity on her feet but that is to be expected. in fact, i think the only headaches she gets now are from crying. she had one of those yesterday.
we had a consult with the neonatologist and one of the nurse practitioners about what their plan of attack might be over the next 24-48 hours yesterday morning on the phone. they explained to us that they wanted to go over any questions we might have about gavin's lungs and what their plan of attack was going to be since, once it was time, they would need to act quickly if gavin's body was showing he needed additional support. let me stop right here and explain that because of just how poor and sick gavin's lungs are and have been, they wanted to give him a steroid to help improve function. gavin's urine output had decreased significantly and he had put on a lot of fluid weight which made him look puffy. his blood pressure was low and his heart rate was high. there was concern that he might be fighting an infection that was causing all of this (his cultures haven't shown to be growing anything)but they just couldn't tell.
After getting off of the phone with them, tracee and i spoke and understood that they may be calling us but we didn't expect a call anytime soon. we went to lay by the pool for a while. a few hours after our initial phone call with them, we got a call from the dr. that they wanted to go ahead and meet at 6:30 to go through everything with us because we had reached that time to go ahead and talk about giving the steroid. of course, tracee and i had been praying that we would never reach that point and that gavin's lungs would RESPOND! turns out that they didn't and so tracee and I got cleaned up and made our way to the NICU. when we got there his vitals weren't great and so we discussed the plan again. we agreed that the steroid was the best possible option for gavin but that it is very rare to be given in babies his age. normally babies that are 4 months old would get this type of boost. we were told he would be getting a very low dosage and that should help protect him against potential risks such as cerebral palsey and decreased IQ. they went ahead and administered the steroid about 7ish and we hung around for about 20 minutes to see how things would begin to go. the dr. explained to us that it would take several hours for it to begin to show signs of improvement and that if we didn't see any positive results we would address it again about 6 hours later. we cried. we prayed. we asked God to shine His face upon us and to show us His healing and goodness. one of the NNP's cried with tracee and i. she let down the side of his incubator and let us both kiss his little head. what a precious and unforgettable moment for us. we really like her. she has been taking such good care of gavin. her shift was over at 7pm but she didn't want to leave. i know that in that moment i certainly felt like Abraham going up to the alter; being asked to sacrifice his one and only son.
we had plans to meet the goble's for dinner and decided to do so because we were teetering on the edge as it was and needed their wisdom and Godly encouragement. as we sat at dinner and cried and shared our emotions; our prayers and hopes were with gavin. tracee felt responsible as if this is her fault he came so early. i felt like everytime we cried out to God for His healing touch on our boy, it was to no avail. our ultimate fear is to lose our son and we both had to acknowledge that and confess that to God out loud. He already knew in our hearts what we were feeling but i know for me i was so afraid to go there because it just seems like that was/is going to be the outcome. we stopped by the goble home after dinner to grab some pillows and clothes to wear as we stayed in a room they had available in the NICU so we could be close to gavin. when we arrived, his night nurse said that he was doing pretty well (considering) and that he had begun to pee which was good. both tracee and i checked on him and i talked to the NNP and she felt like the steroids were working and that he was showing signs of improvement.
we headed to bed - it felt good to be about 200 feet away from gavin at bedtime instead of 30 miles. we prayed as we drifted off to sleep. about 8am this morning we got up to check on him. he had a pretty good night! he pee'd a ton! in fact, on 2 separate occasions, he pee'd so much that he soaked through is diaper and they had to change out all of his bedding! what that really meant was that his blood pressure had improved, his kidneys were working again and his heart rate and saturation rates were much improved. his chest xray from this morning looked better than yesterday but still hazy. this was the move from God we were looking for!
gavin began to do some of the work again and i know that the whole staff was relieved. gavin is the sickest baby in the NICU right now: those were the words of the dr. yesterday afternoon.
we have been pushed to the edge; camped by the red sea with no where to go, looking for God to make a way. He has led us to this place, we PLEAD for a way of escape.
today we are trying to catch up on some rest back at home and hoping that the phone doesn't ring today. they are really going to work at "cautiously being aggressive" for gavin today. pray that they would be able to wean down his oxygen further and that his vitals will allow. we need his little lungs to start working!!!
we can't do this on our own and so we rejoice in the support we get and knowing that you all follow our updates and can get a glimpse of what we are going through. this is by far the hardest thing we have ever had to experience and endure.
jeramy
we had a consult with the neonatologist and one of the nurse practitioners about what their plan of attack might be over the next 24-48 hours yesterday morning on the phone. they explained to us that they wanted to go over any questions we might have about gavin's lungs and what their plan of attack was going to be since, once it was time, they would need to act quickly if gavin's body was showing he needed additional support. let me stop right here and explain that because of just how poor and sick gavin's lungs are and have been, they wanted to give him a steroid to help improve function. gavin's urine output had decreased significantly and he had put on a lot of fluid weight which made him look puffy. his blood pressure was low and his heart rate was high. there was concern that he might be fighting an infection that was causing all of this (his cultures haven't shown to be growing anything)but they just couldn't tell.
After getting off of the phone with them, tracee and i spoke and understood that they may be calling us but we didn't expect a call anytime soon. we went to lay by the pool for a while. a few hours after our initial phone call with them, we got a call from the dr. that they wanted to go ahead and meet at 6:30 to go through everything with us because we had reached that time to go ahead and talk about giving the steroid. of course, tracee and i had been praying that we would never reach that point and that gavin's lungs would RESPOND! turns out that they didn't and so tracee and I got cleaned up and made our way to the NICU. when we got there his vitals weren't great and so we discussed the plan again. we agreed that the steroid was the best possible option for gavin but that it is very rare to be given in babies his age. normally babies that are 4 months old would get this type of boost. we were told he would be getting a very low dosage and that should help protect him against potential risks such as cerebral palsey and decreased IQ. they went ahead and administered the steroid about 7ish and we hung around for about 20 minutes to see how things would begin to go. the dr. explained to us that it would take several hours for it to begin to show signs of improvement and that if we didn't see any positive results we would address it again about 6 hours later. we cried. we prayed. we asked God to shine His face upon us and to show us His healing and goodness. one of the NNP's cried with tracee and i. she let down the side of his incubator and let us both kiss his little head. what a precious and unforgettable moment for us. we really like her. she has been taking such good care of gavin. her shift was over at 7pm but she didn't want to leave. i know that in that moment i certainly felt like Abraham going up to the alter; being asked to sacrifice his one and only son.
we had plans to meet the goble's for dinner and decided to do so because we were teetering on the edge as it was and needed their wisdom and Godly encouragement. as we sat at dinner and cried and shared our emotions; our prayers and hopes were with gavin. tracee felt responsible as if this is her fault he came so early. i felt like everytime we cried out to God for His healing touch on our boy, it was to no avail. our ultimate fear is to lose our son and we both had to acknowledge that and confess that to God out loud. He already knew in our hearts what we were feeling but i know for me i was so afraid to go there because it just seems like that was/is going to be the outcome. we stopped by the goble home after dinner to grab some pillows and clothes to wear as we stayed in a room they had available in the NICU so we could be close to gavin. when we arrived, his night nurse said that he was doing pretty well (considering) and that he had begun to pee which was good. both tracee and i checked on him and i talked to the NNP and she felt like the steroids were working and that he was showing signs of improvement.
we headed to bed - it felt good to be about 200 feet away from gavin at bedtime instead of 30 miles. we prayed as we drifted off to sleep. about 8am this morning we got up to check on him. he had a pretty good night! he pee'd a ton! in fact, on 2 separate occasions, he pee'd so much that he soaked through is diaper and they had to change out all of his bedding! what that really meant was that his blood pressure had improved, his kidneys were working again and his heart rate and saturation rates were much improved. his chest xray from this morning looked better than yesterday but still hazy. this was the move from God we were looking for!
gavin began to do some of the work again and i know that the whole staff was relieved. gavin is the sickest baby in the NICU right now: those were the words of the dr. yesterday afternoon.
we have been pushed to the edge; camped by the red sea with no where to go, looking for God to make a way. He has led us to this place, we PLEAD for a way of escape.
today we are trying to catch up on some rest back at home and hoping that the phone doesn't ring today. they are really going to work at "cautiously being aggressive" for gavin today. pray that they would be able to wean down his oxygen further and that his vitals will allow. we need his little lungs to start working!!!
we can't do this on our own and so we rejoice in the support we get and knowing that you all follow our updates and can get a glimpse of what we are going through. this is by far the hardest thing we have ever had to experience and endure.
jeramy
Friday, April 16, 2010
TGIF?
TGIF! "thank God it's friday" or "thank goodness it's friday" right? i'm not leaning that way today. while that may be the acronym and they've developed a high calorie/high fat restaurant concept around it, it's not what the Williams family is feeling today. gavin has been having a rough couple of days and i got a call from the NICU this afternoon that on his blood tests it looked like he was showing some sort of infection brewing so they have now begun him on an antibiotic to fight that and hopefully calm him down. he has become less resistant to touches and moves of late and that can certainly be due to the fact that the little guy doesn't feel well. in order to keep him more comfortable they have put him on a sedative drip rather than giving it to him every few hours. his lungs continue to be a little more hazy than yesterday and his heart rate remains slightly elevated - probably stress and rightfully so! we are discouraged by this news and as the Psalmist wrote in Psalm 67 "may Your face shine upon us", we are wondering why it seems God has rather been doing the opposite. feelings are delicate. we all have them and they all play into our decision making on some level or another. they can be so good and yet so bad in some cases. i'm just a man, trying to take the best possible care of his family and wanting to do whatever i can to take the pain away from my wife and my little boy and yet there isn't anything i can do.
tracee just got dropped off at the ER at Shea as she is going to have a blood patch procedure done by an anesthesiologist (her doctor's husband) at about 4:30 to try and solve the issue with her horrible headaches. ever since the spinal she was given to perform the C section, she has dealt with major headaches that really leave her incompacitated. the goal is to draw some of her own blood and reinject it into the spinal column and sort of block the leak that is occuring. we are told that this should provide instant relief for her and so we are praying for wisdom for the doctors and surgeons and that it will be a quick and easy procedure and deliver the results we are looking for. my heart goes out to tracee as she wants so desperately to be back to 100% and has been operating at about 30%.
somewhere in the mix i try and work but i tend to get caught up with doing things like this and doing the best i can to manage information that is given to me by doctors, nurses, specialists, etc and then pass it along to our faithful followers and family.
today has been pretty crappy and frustrating to have things happen to tracee and baby. it really is hard at times because most of these things are like the fraction of a percent of a percent deal - and we get hit with them! maybe we should play the lottery?
pray for a continued calm in the storm for us and for our spirits as they have been stepped on so many times along the way. pray for tracee's procedure to go perfect and FIX the problems and the gavin will RESPOND WONDERFULLY to the treatments.
finally, to all of you parents: hug your kids. love on them. tell them that you love them and that you are thankful for them. we can't hold gavin and we can't hug him. we get to tell him through some plexiglass that we love him and are thankful for him but it's just not the same is it? you never know what you have until you don't have it. so...when your kid is crying or acting up or running when they shouldn't - just stop and be thankful for their ability to do so. thank God for those good and perfect gifts.
jeramy
tracee just got dropped off at the ER at Shea as she is going to have a blood patch procedure done by an anesthesiologist (her doctor's husband) at about 4:30 to try and solve the issue with her horrible headaches. ever since the spinal she was given to perform the C section, she has dealt with major headaches that really leave her incompacitated. the goal is to draw some of her own blood and reinject it into the spinal column and sort of block the leak that is occuring. we are told that this should provide instant relief for her and so we are praying for wisdom for the doctors and surgeons and that it will be a quick and easy procedure and deliver the results we are looking for. my heart goes out to tracee as she wants so desperately to be back to 100% and has been operating at about 30%.
somewhere in the mix i try and work but i tend to get caught up with doing things like this and doing the best i can to manage information that is given to me by doctors, nurses, specialists, etc and then pass it along to our faithful followers and family.
today has been pretty crappy and frustrating to have things happen to tracee and baby. it really is hard at times because most of these things are like the fraction of a percent of a percent deal - and we get hit with them! maybe we should play the lottery?
pray for a continued calm in the storm for us and for our spirits as they have been stepped on so many times along the way. pray for tracee's procedure to go perfect and FIX the problems and the gavin will RESPOND WONDERFULLY to the treatments.
finally, to all of you parents: hug your kids. love on them. tell them that you love them and that you are thankful for them. we can't hold gavin and we can't hug him. we get to tell him through some plexiglass that we love him and are thankful for him but it's just not the same is it? you never know what you have until you don't have it. so...when your kid is crying or acting up or running when they shouldn't - just stop and be thankful for their ability to do so. thank God for those good and perfect gifts.
jeramy
Thursday, April 15, 2010
this hurts
there's this video that is out on Youtube that depicts this guy who has an encounter with God and God is slowly chipping away at him with a hammer and chisel. In fact, I think the video is called "God's Chisel." when God starts hammering away, the guy reacts in pain. i'm that guy right now. this all really hurts. my son, gavin, isn't doing as well this morning. just when we think he is beginning to turn the corner and do better, he takes a step back. i know that i say over and over again that his lungs are immature but they are! he is in this place now with the dr's and the nursing staff that they aren't sure if his heart is contributing to his lungs or if his lungs are contributing to his heart, etc. he has a valve that is open (all babies do) that is pushing blood into his lungs, perhaps, and they really want to see if that will close on it's own. babies born at a normal gestation have that valve naturally close. oh God have mercy and grace upon our family and little gavin!
please pray specifically that he would digest his food as the plan is to continue to increase his feedings even though he isn't getting it all the way through. please pray for this PDA valve to close if it is open and that his heart and lungs would stabalize and relax. please pray that there would be NO lung or heart damage as our little kiddo is working so hard. i feel a little disconnected today. i hate it. i continue to think about Scripture and about God's unfailing love and i turn to that now. please pray for tracee and i and our marriage.
"i am laid low in the dust, preserve my life according to your word." Psalm 119:25. this verse sums up how i'm feeling as i am face down on the ground pleading with God for healing and that he would preserve gavin's life according to His word.
jeramy
please pray specifically that he would digest his food as the plan is to continue to increase his feedings even though he isn't getting it all the way through. please pray for this PDA valve to close if it is open and that his heart and lungs would stabalize and relax. please pray that there would be NO lung or heart damage as our little kiddo is working so hard. i feel a little disconnected today. i hate it. i continue to think about Scripture and about God's unfailing love and i turn to that now. please pray for tracee and i and our marriage.
"i am laid low in the dust, preserve my life according to your word." Psalm 119:25. this verse sums up how i'm feeling as i am face down on the ground pleading with God for healing and that he would preserve gavin's life according to His word.
jeramy
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