a little bit of everything

gavin finished his third round of steroids twelve days ago and he has pretty much been able to maintain his ventilator settings. they have been able to ween some of his settings on the ventilator and our hope as that with each day, he can put on more weight and move closer and closer to being on c pap. he is still tolerating his feeds, getting 27 ml every 3 hours. it takes him an hour and a half to eat all of that so he basically just eats all day. no wonder he is growing! he now weighs 2 lbs. 11 ounces. in addition to tolerating his feeds, they stopped his morphine, which he was only getting once every 24 hours. so now, he only has his e.t. tube and his feeding tube. there are no iv's, no picc lines...NOTHING in his little body. we love that. they are drawing occasional blood gases so he does get pricked every now and then but not nearly as often as he was before!

gavin is so alert. when we talk to him, he looks our direction and will open his eyes. we love that. it definitely makes us feel more connected. the eye doctor came in to look at his eyes since premature babies' retinas aren't attached. he checked to see if the blood vessels are making their way toward the eye. the vessels haven't reached yet, but as of his first check, it doesn't appear that anything is abnormal. the eye doctor will check him every 2 weeks to see how the vessels are progressing and to check for abnormalities.

another step we have coming up will be moving gavin to an open crib from his incubator. there are a variety of things that the doctors like to see happen before this occurs. they like the babies to be about 1800 grams (gavin is about 1200), be able to regulate their body temperature (which gavin is pretty much doing...), and they prefer that they are off of the ventilator. we obviously don't want to push any of these steps with gavin since he is progressing so well. they are beginning to pull back the blanket on top of his incubator so that gavin can begin to adjust to day/night. this is super exciting to us....steps forward indeed! another reason that we don't want to push him into an open crib too soon (not that it's up to us anyway :-) is that gavin is still very sensitive to noise and when he is outside of the incubator/has the cover off (which helps muffle sound), he tends to de-sat and require more support. the more mature he gets, the better that will be.

we are extremely pleased with gavin's overall health. he is getting so big!! he still is occasionally having his breathing episodes (bronchial spasms) where he needs to be bagged. those are extremely scary for us. also, he extubated himself the other night 2 or 3 times. please pray that he keeps his tube in and that his lungs continue to heal and get stronger and stronger, which will help him with the bradys and the spasms.

thank you so much for all of your prayers and support, as always. i cannot stress enough how blessed we feel...

Great is His FAITHFULNESS!

a picture of perfection

here is a recent picture of gavin...wide awake! some of you have seen it but we wanted to make sure that all of our faithful followers got to see him!

is it just me, or is he perfect? :)

music to my ears

i love music and i love how God uses it to speak to me. it's crazy how i can hear a song numerous times and never really have it resinate with me until i face some type of momentous occasion, whether joyous or painful. obviously, in this time in my life, it's the painful moments that have me looking closely at the lyrics in a song. i remember hearing this song on my way to the hospital one morning last week. as i was driving down the 101, i had a beautiful view of the mountains and desert and i was thinking about just how big everything that God made really is. i have to be honest that i found myself frustrated. why was it that my God, who is so big and has created the heavens and earth, still hasn't "stepped in and saved the day"? i know that it's not because He can't. if that was the case, i wouldn't be frustrated. i'm frustrated because i KNOW that He can. i find myself frequently crying out to Him, "What are You waiting for?!". i don't have the answer to that....i don't think anyone does. but i think it's okay to be frustrated and to voice those frustrations to Christ. lately, i'm finding that transparency with God is a good thing...something i've never really experienced with Him before. and at the end of each day, even when it's "still raining", i CHOOSE to praise Him in this storm. please read through the lyrics (even if you've heard the song a hundred times). i think it is the most honest plea with Christ that still has a man bowing at the feet of Jesus amidst his misunderstanding.

"Praise You In This Storm"

i was sure by now

God You would have reached down

and wiped our tears away

stepped in and saved the day

but once again, i say "Amen", and it's still raining

as the thunder rolls

i barely hear Your whisper through the rain

"I'm with you"

and as Your mercy falls

i raise my hands and praise the God who gives

and takes away

and i'll praise You in this storm

and i will lift my hands

for You are who You are

no matter where i am

and every tear i've cried

You hold in Your hand

You never left my side

and though my heart is torn

i will praise You in this storm

i remember when

i stumbled in the wind

You heard my cry to You

and You raised me up again

my strength is almost gone

how can i carry on

if i can't find You

but as the thunder rolls

i barely hear You whisper through the rain

"I'm with you"

and as Your mercy falls

i raise my hands and praise the God who gives

and takes away

i lift my eyes unto the hills

where does my help come from?

my help comes from the Lord

the Maker of Heaven and Earth

days when my strength almost feels gone, just like the song says, He gives me just enough to get through it. i believe He speaks in ways that i'll understand. lately, for me, it's been through music. for those of you who may have never heard this song before, i added it to the playlist on the blog. love you all!

feed me! feed me!

let me start with some good news: gavin loves his food! i realized since we wrote last that he was just about 900 grams. as of this morning he has broken through the 1 kilogram milestone and is now sitting at 2 pounds 4 ounces! that makes all of us so happy!! he continues to tolerate his feeds and he is now up to 22 ml's every 3 hours spread out over a 1.5 hour feed. so...he basically is eating all the time. he continue to poop and pee very regularly and that is AWESOME for these micro preemies. he has been averaging about an ounce a day over the past 3 days and that is such a thrill for mommy and daddy.
he continues to have some bouts with the bradycardia's we mentioned last time and there is no way to sugar coat those, they are darn scary. yesterday he had one just after we were helping do his cares about 2:30pm and it just came out of nowhere. all of a sudden there were 5 people bedside and my folks and tracee and i were just watching and praying as they brought him back. it is so tough for us in those moments but if you were to look at him afterwards, you would never be able to tell he just had a major scare! he is always wide awake and looking around - probably thinking "what are you guys all doing staring at me? i'm fine." you give us all a run for our money gavin!!
he continues to get his antibiotic (day 4) every 8 hours to fight the infection in his body and for tracee and i we sense that he is still sick. they had to move his IV from his head to his arm as the catheter wouldn't flush any longer; it had become kinked. they increased his pressure settings on the ventilator this morning because his CO2 levels were a bit elevated and the continue to work with gavin's lungs.
once again we update you all and ask that you continue to pray for his LUNGS. he is now 4 days off of the steroid and we PRAY that he can continue to maintain the levels he is at so they can grow him on the vent and get him bigger and stronger in preparation for CPAP down the road.
yesterday tracee and i sat in church and listened to a wonderful sermon on abiding in God. that word abide can also be translated as remain. it brings comfort to both of us to know that God remains in us at all times and we have to make a conscious effort to remember to remain in Him.  what a faith building exercise we continue to go through!
a dear friend of mine gave me a book called The Red Sea Rules: the same God who led you in will lead you out by robert j. morgan. for those of you who don't know the leadings up to the point where moses parted the red sea, and the israelites walked through to safety on the other side, it was looking pretty bleak for them. the egyptians has allowed their israelite slaves to go and, led by moses, they sought out the promised land with God's direction. a long story short, they ended up encamped next to the sea with mountains surrounding them on either side, the sea in front of them and the egyptians pursuing them from behind. God led them to this place! well...we all know the miracle that took place and the sea was parted and the egyptians in their pursuit were swallowed up by the sea just as the israelites all reached safety on the other side. the impossible way of escape was made possible.
in the next to last chapter of this book, it talks about faith building. "Lord, increase our faith. Lord, I believe; help Thou mine unbelief."  God grows faith in us, just as he is growing gavin's little body now. how? the book states that like any good teacher, He bestows truth, then devises tests to review and reinforce that truth, to transfer and translate it into lasting, life-changing experiences. it's like He is the coach and we are the players. we take His Word in scripture and use them as the plays and the rules and then we practice and scrimmage and re-review, etc. in this process we go from being good players to skilled pros. little faith grows into great faith.
i am not saying i have this all down! not at all! the thought crossed my mind yesterday as i sat in church: "why can't i just trust more?" i doubt all the time!! but God's grace carries us through and we continue to practice some more.
our concerns for today and over the next couple of days will be his lungs and how they will have to support him with his settings. continue on with us as we trust God for His timing and His healing hand upon gavin's body. guys, i cannot begin to tell  you how beautiful he is! what an amazing kid. we long for the day to bring him home. thank you for your help in sustaining us in our weaknesses and our frustrations. please continue to reach out to us and support us as you feel led - we feel so good to know that you are there.  THANK YOU!

jeramy

bradycardia

well...we continue to ride the rollercoaster. up and down and around and around. that just seems to be the typical stint in the NICU for a baby like gavin and for being as young and premature and sick as he has been. there are a lot of things to be very thankful for though. he is doing phenomenally well on his feeds and is up to 20ml's of food every 3 hours and has now gone to 26 calorie which is a fortified feed. the doctor explained to tracee yesterday that the equivalent of what he is getting would be like me ingesting 15,000 calories a day! his little body is clearly needing it as he did drop 10 grams overnight so he sits just under 900 grams.
please pray, pray, pray for his lungs still!! he has had what they call brady's over the past 3 days which are due to some bronchio spasms occuring where his airways just shut down and he needs to be bagged to inflate his chest and get him back on track. this is a very scary thing for us and i'm sure for him as well. please pray for our peace as we continue to trust in God's healing for gavin and for his lungs and freedom from these episodes.
gavin is scheduled to get some blood today and then have his pic line taken out later on. he received his last dose of the steroid this morning and we PRAY that this will be enough to get him over the hump!! he is such a sweet boy and already has an amazing personality and a drive to live and pull through. we get so tired of having to go through this over and over again - we don't want to hear talk of any more steroids!
please stand with us in these prayer requests. we know that there is a lot of power in prayer!

jeramy

860 grams

gavin weighs 1.89597545 pounds today - at least that's what google told me when i converted how many grams he is today. i guess gavin decided to extubate himself last night. apparently this is not much of a shock as these little guys begin to get older and more aware of their surroundings. the neonatologist was right there to re-intubate him and all is good. gavin continues to remain stable on his current settings on the coventional ventilator and that is good as we really need him to grow! they have continued to increase his feeds each day and he is now getting 15.5 ml's of fortified breast milk which is awesome! if you remember back from many posts ago, he was getting 3ml's or so every 3 hours. tolerating feeds in the NICU is one of the biggest hurdles and so far, God's blessings, gavin has continued to increase on his feeds. he is almost up to full feeds and will probably be there tonight or tomorrow.
there are only 7 babies in the NICU right now as a lot of gavin's mates have gone home. he still has a couple of friends who are in there with him that will be there for some time, but gavin still remains the smallest and most critical baby in the NICU. but....he is coming along! it's important for us to remember that God delivers in His own unique way in His own timing. my little finite brain continues to think that i know what the best plan of attack should be but i seem to get over ridden quite a bit! at the end of the day it continues to come back to trusting. we trust that God has a plan and will continue to allow it to be revealed in His timing.
nevertheless we continue to petition for our prayer requests and for what we as well as the doctors want to see for him! 
our request for today is that you would continue to pray for protection over gavin's body and organs. please continue to pray for the right nurses to be with him and that they would be alert and attentive to his needs. the NICU, just like any other business, tends to relax when things slow down. it's such a crazy phenomenon but i see it happen in business all the time and it's not something we want to experience in the nicu. we don't want the nurses to relax when paying attention to gavin as his signs are so important for his life right now.  please pray for his GROWTH!! he will be coming off of his steroid either today or tomorrow and it is so important for him to be able to maintain and to sustain and the more he grows, the bigger and stronger he becomes. it isn't good for babies to remain on the ventilators for long periods of time, but for now he is ok. however, please pray that his lungs would continue to improve and strengthen so we can get him back to c pap and then eventually even lower support than that.
i try to be as specific as i can for you all so that you know what to pray for and what is going on exactly. this is no time to be vague!
finally, thank you to all of you who have continued to support gavin and both tracee and me! the bracelets have been a huge success to help remind people to think of and pray for gavin. the benefit account is up and running and we thank you for donating and helping as you feel called! we could not do this without you all - nor would we want to!
i continue to be humbled when i see so many people join forces and come together for something such as this. thank you for caring so much for us and for gavin's life. he is a beatiful little boy and i can't wait for you all to be able to see more of that and partake in that a little bit more. in the meantime, you know how you can help us!! PRAY! PRAY! PRAY!
"delight yourself in the LORD and he will give you the desires of your heart." Psalm 37:4

jeramy

newsflash: gavin is a miracle

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

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!!

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

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:

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