Tuesday, November 30, 2010

surgery

our worst fear has come true. gavin has to have surgery. we have made it so far without surgery for this little guy and for that, we are blessed; however, we are experiencing a wide array of feeding problems with this precious little boy. i had to place his feeding tube back in last week because he was not getting the amount of food he needed to gain weight. in fact, he was losing weight. gavin cannot lose weight. it compromises a variety of things for him that tend to cause everything to spiral out of control. his breathing becomes compromised because he doesn't have the nutrition he needs and it requires him to work harder and he doesn't receive the calories that he needs in order to grow healthy lung tissue. ultimately, our overarching goal is for his lungs to heal and without proper nutrition, they are unable to do so.

the feeding problems began for gavin about 4 weeks ago when he began to teethe. as exciting and "typical" as teething is, it presented some problems for gavin. all children develop excess saliva in their mouths as a result of teething; however, for gavin, the saliva caused him to gag a lot. because he was intubated for so long (2 and a half months), he has a condition called esophogeal dismotility. this means that he doesn't always feel the sensation that there is stuff pooling in the back of his throat or slightly down his throat and he won't swallow as often as he should like other children do as an every day reaction to that sensation. so he would gag. the problem with the gagging was that his ng feeding tube goes down his nose and into his stomach and each time he would gag on that excess saliva, he would throw up his ng tube and any food that was in his stomach whether it was a partial or even whole feed. it was so discouraging to us because feeding gavin is already a huge challenge in our household and it is a time that is stressful on us and on gavin. in an instant, 30 minutes of feeding could be wiped clean. so.....gavin wasn't getting the volume that he needed. i had to keep reinserting his ng tube and my poor baby just hates that (do you blame him??). we tried for a period of time to just feed him without the tube in and hoped that he would just take enough volume by bottle (since he is on high calorie formula-30 calorie). but, his lungs can't do that much work. it is too hard for him to eat that much and we see drastic increases in his work of breathing and his oxygen requirements.

after talking with doctors throughout the past week, we have collectively come to the conclusion that the answer to solving this problem is to have a gastric tube (which is also called a g-tube) surgically inserted into his stomach. the surgery will take about an hour to an hour and a half. now, i am well aware that kiddos have surgery every day. i understand that. but kids with lung disease don't. putting gavin on a ventilator seriously compomises him. the process of intubating a kid like gavin is difficult because gavin's lungs will LOVE the break and as "typical" kids are extubated right off a ventilator after surgery, gavin might not be as easy. as many of you, who keep up with our blog have read, it has been a challenge to get gavin to the place we are today. we don't want any setbacks.

jeramy and i are both ready for the g-tube. we know that it is what gavin needs. we know that it will give him the best opportunity to grow and develop without the stress of having to eat. we will still be able to give him bottles which is great for his development. we are looking at it as a short term solution to our problem and we hope and pray that this will not be a long process for him. hopefully, this is exactly what his little lungs need. that way, we can continue to play with him and do more developmental things with him. right now, feedings consume our days and make him so tired that he doesn't have strength for much else.

we are trying to make it until next monday when we have our consult with the surgeon. that means the surgery will likely take place tuesday or wednesday of next week. please pray that between now and then gavin's ng tube can stay in (that is how we are doing all of his feeds to give him a break). pray for skilled hands from the surgeon. pray that the anesthesiologist (who i hear is the best) can possibly do a partial intubation-just to the vocal cords and avoid the ventilator. pray for a fast recovery for our little sweet pea. and please please please pray for me and pray for jeramy. we are struggling. the battle seems never ending. we feel like we are wandering in the desert and we have no idea how long we are called to be out here. it is so easy to lose hope when there appears to be no end in sight. it is easy to lose hope when you can't feel His peace. i pray everyday for the Holy Spirit to intercede on my behalf. i am weak. i know God's Word reminds me that when i am weak, He is strong.

i'm sure glad someone is...


4 comments:

  1. Hi Tracee,

    I continue to check your blog daily to keep tabs on your little man. Life is busy with twins, but I can only imagine that yours makes mine look like a piece of cake. I miss you and your funny stories. I bet you can barely remember life before Gavin. It's funny how when you become a mom it's as if this was always your life. Your children become such a huge part of your life and heart. I remember when I had my first baby. I was waiting for the miraculous instant that I would bond with my son. Instead, I came to find that my sacrifices and investment in caring for him over time is what created that unconditional love between us. Thinking of your investment with Gavin, your heart must be so full of love... your cup runneth over!
    All my love and prayers,
    Rachelle

    ReplyDelete
  2. Courtney Mora-LudwigNovember 30, 2010 at 10:16 PM

    I haven't been able to get online and read your blog is a long time. I cried reading over your posts - you have had such a rough road with your little Gavin. I can't say much more than "hang in there" and that sounds trite and cliche. So instead I will pray.

    Dear God, please wrap your loving arms around this little baby and his parents. So many people are praying for this little guy and I know you are listening. Calm all the fears and give them peace. Show them the joy in having such a little fighter for a son. Life can be hard, but with you, God, on our side - nothing is impossible. Amen

    ReplyDelete
  3. "Therefore, behold, I will allure her and bring her into the wilderness, and speak tenderly to her" hosea 2:14
    "But who can endure the day of His coming, and who can stand when He appears? For He is like a refiner's fire and like a fuller's soap. He will sit as a refiner and purifier of silver and He will purify the sons of Levi and refine them like gold and silver, and they will bring offerings in righteousness to the Lord" malachi 3:2-3

    You guys have been through it. I can't even imagine the agony these past 8 months have brought you. These verses are for you to hear clearly that God has tender words for you. He is with you as you've been brought to this place. You both are being purified in the fire, but your refiner is not far from you. He knows exactly when to pull you out, when you'll shine as He desires and when to save you from turning to ash. You have brought your offering to the Lord and as Amy Ellenwood has told me, the altar of the Lord is the safest place for your children to be. Offered to the Lord. Guys, Gavin is where He needs to be and as you continue to be stellar parents, lovely children of God and giving Him glory... He will speak tenderly to you as you slowly meander around the desert. Though you don't know where you're going... He does.

    I love you guys so much and just can't wait to meet Gavin. He's a special one that little man and I will pray that Gavin has strength enough to let me give him a BIG squeeze when I get there!

    Be encouraged and know that I support your emotions, your process and that I desire for you to know true joy. Isn't that what Gavin is anyway... pure joy? <3

    ReplyDelete
  4. Tracie and Jeremy,
    Please know that I am praying for you from afar. Your story is a heartbreaker, but I am constantly amazed at how strong you and Jeremy are! I had the opportunity to talk with jeremy at Asher and Greyson's dedication, but could not find the words. I still don't know if I have the right words, but i want you to know that I pray God's healing grace on your precious baby boy! I also pray that the Lord will uphold your spirits! That you and Jeremy will lean on God for all your needs, that the spirit will work in you and uphold you during this time of great trial, that you will cherish each moment with baby Gaven, as we all should with our children, and that you and Jeremy will continue to work on your marriage during this time as well. My heart and prayers go out to you!
    Cheryl Fey

    ReplyDelete