Tuesday, July 6, 2010

one day at a time

gavin was 3 months old yesterday. i can't believe it. well, actually, i think i can. so many people think that time has flown by and they can't believe it has been that long, but we feel like it's been even longer. time is really beginning to crawl in the nicu. this is the point in the stay where parents of long term nicu babies tend to develop nicu-itis. oh, we have it for sure. we so desperately want him to be home with us and the fourth of july really hit me for some reason. as we gathered with family and friends to watch the fireworks, a part of me felt so empty. it was obvious to me that something was missing. there were strollers everywhere in the park as families around the valley gathered to enjoy this holiday together. as i watched the fireworks, tears came to my eyes as it hit me that gavin was missing it. now i know that gavin is a baby and would have more than likely slept through them, but still....he would've been there. this was our first "holiday" with a baby and we had to celebrate without him. however, i look forward to thanksgiving and Christmas when i know he'll be here.

gavin is making a ton of progress lately. he is currently on his fifth round of steroids and will remain on steroids until he gets to a reasonable amount of oxygen. the problem we face is that gavin loves his steroids. he makes great progress while on them but has a tendency to take steps back when they take him off. as we faced reintubating him and putting him back on the vent a few weeks ago, steroids were the clear choice. he is able to do developmental things now that he isn't on the vent. on cpap, he is able to have physical therapy, occupational therapy, and even massage therapy. also, jeramy and i are able to provide ALL of his cares for him, just as if he was at home with us. it's crazy how excited we get that we get to pick him up by ourselves now, put him back in bed by ourselves, and even give gavin baths...real baths! we are overcome with joy when we get to spend that time with him!

so, like i said, gavin is on cpap (the mask that helps his lungs stay open as it provides pressure) where he does all the breathing by himself. yesterday, they started sprinting with him. that means that for 3 hours a day, the respiratory therapists put him on high flow canula. if you've been keeping up on previous posts, you may remember that when he is on high flow canula, he can begin to nipple feed from a bottle. we are unable to do that on cpap because it can cause him to aspirate. yesterday, gavin got his first bottle! he was sound asleep as jeramy, gavin's nurse and i tried to stimulate him to wake up. he was sucking pretty well but not quite strong enough to get much out of the bottle. hopefully, when we try it tonight, he will be more awake for his feeding. so, he will transition onto high flow canula for 3 hours everyday. once those 3 hours are finished, he goes back on cpap...regardless if he's doing well. the neonatologist described it as preparing for a marathon and we don't want gavin to get worn out. the thing about gavin is that he loves having the mask off his face that he could be collapsing down and not show many signs leading up to it because it is so enjoyable for him to not have anything on his face. ahh...the personality already....i love it!

so please pray that as the doctors evaluate his progress each day that we can move closer and closer to getting to the high flow canula full time. we know it is still a long road ahead as gavin has the sickest lungs they have seen. that's our reality. so, we push ahead, one day at a time, knowing that God is still at work and that His timing is perfect. i don't get it and jeramy doesn't get it....but we rest in the fact that God does. please pray not only for gavin, but for us as well. this has been quite the journey for us. the agony we feel every day is so real and unlike anything we have ever experienced. i have prayed the same prayer every day for 91 days. with joy, we have gone to and from that hospital twice a day to spend time with our precious miracle. i love our moments with him but i CRAVE normalcy. we are so weary.....at this stage we need people to love on us and lift our arms to Jesus when we are too weak to do so. we love you all and appreciate you walking alongside us throughout this journey.


  1. T, for 91 days you have had to endure this storm. And it seems as though this storm will never end. Look back, you have come through the storm! You are still in it, but you have come through it!

    It hasn't taken over you, you have conquered it! You have taken each wave and rode it out. You have taken each downpoor and not drowned!

    I know you ache to take Gavin home. I can't imagine the separation pain you go through each day when you have to leave him. But I do know that you are there for a reason. God did not put you in the NICU without a plan. Gavin's lungs are the worst they have seen, but the Doctors are learning from him! You may even be inspiring other parents who are struggling.

    I hope the NICU stay is coming to an soon. I pray for that every day. And, I pray for your strength and courage because I know that you are feeling overwhelmed.

    Chin up.. you are fighting an AWESOME FIGHT!


  2. I am so honored to call you friend my dear!!! I know you can't even begin to see what we all see, but it's so humbling to watch you walk through the rain with so much strenghth while sharing the realness of your journey with us all. Our prayers are with you everyday...and every night..and I pray that you will soon feel the overwhelming JOY that is promised to those who hold on to his words! Love you so much TRA!

  3. you guys have done so awesome through all of this. I know that this has been a long hard road but it will soon be over and you will be taking your sweet baby home and enjoying him so much. Keep trusting God!

  4. It was awesome to see all of you this past Fri. I know this will be one of the hardest times in your lives, but hang in there. You are stronger than you think and God is there to give you more and more strength to get you through. Take care and give Gavin a little kiss from me.

    Carol Sakala

  5. I was just reading the lyrics to Brandon Heath's song, 'Love Never Fails'. Made me think of you and hope you have, or will read them, and be encouraged,knowing you are very loved!
    Sharon E.