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...
  • 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......
God, when i was growing up, i knew you were big. but i didn't know HOW big You were. as i drive to and from the hospital, i cannot help but look at your creation...the intricacies, the magnitude, the beauty. i have NO DOUBT that You are bigger than this. You are bigger than medicine and You are capable of healing my son in a way that can ONLY be described as a miracle. shame on me for ever doubting you...as a friend told us on saturday, amidst our suffering, "one thing he knows to be true is that, no matter what, GOD IS GOOD....."


10 comments:

  1. Praising God with you for the miracles He is doing daily in Gavin's life! And the testimony you share is a blessing and a challenge to each of us to totally trust God and His love for our families. It is so encouraging to read of the progress Gavin is making...for him to be on CPAP and breathing on his own when he is so tiny is amazing! Try not to be discouraged if he tires and needs to go back on the vent for a little while. As you have seen, 2 steps forward and 1 back is the norm for the NICU, and it is still progress:) We pray you get to hold him soon! Love and hugs, Cindy and Phil Adams

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  2. Great is Thy faithfulness Lord God Almighty!

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  3. and God is glorified in Gavin, and in you and Jeramy - and He will continue to be glorified.

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  4. OMG girl you just made my day!! I have been praying so much and here I read the great news! Amen and alleluia! I am getting ready for church right now and I will send my prayers to God for Gavin the entire time I'm there! Praise be to God and our Lord, Jesus Christ!

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  5. You go Gavin!!!! At least in our experience, although psychically challenging for Avi to be put on our chest...I have always believed that it helped him breath better.

    Makes sense that he would be a younger gestation but all the more a miracle!!!!

    Keep taking care of yourself honey.

    Prayers continue!

    Raquel

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  6. Tracee! Thanks for sharing your heart with us about being mom. I think that "Mom" is taken for granted by many and you just made so many mom's stop and be thankful, another way you are ministering in your time of trial, amazing.

    We continue to pray for your requests!

    I hope this is encouraging to you...
    http://connect.tangle.com/view_video?viewkey=45a6bbb9ff82714df8c6

    Love you & Here for you guys!
    Andy & Nicole

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  7. Tracy, I love reading Jeramy's posts, but it's so nice to hear your words! This one made me cry, I feel for you as a new mom. I am fervently praying for Gavin's strength, and now for the day that you can actually hold him! I'm so happy that it's looking like it might be soon. Love you

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  8. Your story has been brought o my attention from a mutual friend (Destiny Alfonso). You and your family are definately in my family's prayers...God bless you and your tiny miracle.

    Sincerely,
    Megan Quezada

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  9. Tracee,
    It was so good to see you last week, I'm glad you were able to come, though I'm sure it was hard. We are lifting you all up in prayer, especially for strength for each of you. Each time I read the powerful words you and Jeramy share here, they never cease to bring me to tears. Your faith is such a testament to us all. I hope with all my heart you will be able to hold him soon, your son:) Not only will it be greatly beneficial to him, but it will help you so much with your beginning to "feel" more like a mom. Some of that is normal with a new baby, especially the first, but I can't even begin to imagine what it is like for you. Your honesty and transparency is so touching. Sending you all big hugs.
    Your Daddy in Heaven is keeping you tight in His arms and wiping your tears away with perfect kisses.
    Love,
    Ashley and the Resler Family (Jake still prays for little baby Gavin to grow big and stong 'like the Hulk!")

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  10. He will be in your arms SO SOON, Mom! You will be amazed and encouraged by how good this will be for his health, and your feelings as a mother!

    Know that your family is in prayers from all corners. You are loved and supported.

    Go Gavin, Go!

    Kristin

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