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

9 comments:

  1. I am humbled and stirred by your struggle. And while I am sure it doesn't feel like it, all of us praying for you, are sharing in your burden. I have yet to meet Gavin, and yet this tiny baby has drawn me closer to the Lord. He has spurred me on to pray more feverently and with more hope than ever before. And I will continue to do so, with great expectation for what the Lord will do.

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  2. Expanded the prayer network today at a new church we went to. Filled out a prayer request and the ladies in this group will be praying for you all every day this week. Of course, continuing personal prayer for your family as well. We are filled with faith, hope and desire for your family to be healed and healthy in all ways. Psalm 30:2

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  3. We are praying for your Gavin...and for you both. Keep the faith.

    Jeremiah 29:11 “For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.”

    Isaiah 41:10 “…do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand.”

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  4. We're on our knees praying for each of you this morning! I posted your story on my blog this morning so you've got hundreds of more prayers on their way!

    Phil 4:6 "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God: (7) and the peace of God, which surpasses ALL understanding, will guard your hearts and minds through Christ Jesus."

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  5. Gavin is in my prayers, and on several prayer chains around the country through my family. Having had a son in the NICU for two months, I know how terrifying it can be and the pain of not being able to hold the boy you love so much. He is tiny and sick, but he is fighting, and he can feel your love right through those incubator walls!

    We love you all, and believe for the best outcome for this miracle boy.

    Kristin, Michael and Jack

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  6. We're praying for little Gavin. Healing is already happening in this little boy. Keep up hope and take care of your own bodies.

    Keep strength little boy. God has great plans for you.

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  7. I hope that this song, Revelation Song, will feed your heart and fill you with God's love. Here is the song if you want to listen or read.
    Love You Friends!
    Andy & Nicole

    http://www.tangle.com/view_video?viewkey=c455e06ebd06647fc4de

    Worthy is the,
    Lamb who was slain
    Holy, Holy, is He
    Sing a new song, to Him who sits on
    Heaven's Mercy Seat
    [Repeat 2x]

    (Chorus)
    Holy, Holy, Holy
    Is the Lord God Almighty
    Who was, and is, and is to come
    With all creation I sing:
    Praise to the King of Kings!
    You are my everything,
    And I will adore You…!
    Yeah!

    Clothed in rainbows, of living color
    Flashes of lightning, rolls of thunder
    Blessing and honor, strength and
    Glory and power be
    To You the Only Wise King,
    Yeah

    (Chorus)
    Holy, Holy, Holy
    Is the Lord God Almighty
    Who was, and is, and is to come, yeah
    With all creation I sing:
    Praise to the King of Kings!
    You are my everything,
    And – I - will - adore You!
    Yeah!

    Filled with wonder,
    Awestruck wonder
    At the mention of Your Name
    Jesus, Your Name is Power
    Breath, and Living Water
    Such a marvelous mystery
    Yeah...

    (Chorus)
    Holy, Holy, Holy
    Is the Lord God Almighty
    Who was, and is, and is to come, yeah
    With all creation I sing:
    Praise to the King of Kings!
    You are my everything,
    And – I - will - adore You!

    Holy, Holy, Holy
    Is the Lord God Almighty
    Who was, and is, and is to come,
    With all creation I sing:
    Praise to the King of Kings!
    You are my everything,
    And – I - will - adore YOU…

    (Chorus) (Repeat at a cappella)

    Come up lift up His Name
    To the King of Kings…
    We will adore YOU Lord…
    King of heaven and earth
    King Jesus, King Jesus
    Aleluya, aleluya, aleluya!
    Majesty, awestruck Honor
    And Power and Strength and Dominion
    To You Lord,
    To the King, to King
    To the King of Glory

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  8. I have missed you very much and have been hounding Stacy and others for news on you. I do the readings at my church sometimes, and lead prayers for the sick. Sunday, when I asked the congregation to silently pray for those who need it, I thought only of you and your son. I pray that this too will pass and that your son will be home with you and your husband soon. With God all things are possible. I have seen it myself. Peace be with you and your husband!

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