Quick update and I'm also hoping to get some pics up tonight...
Jonah had 22 oz on Saturday with 2 oz solids.
He had 19.8 oz yesterday with maybe an ounce of solids.
And he ate 20.5 oz today with NO SOLIDS.
When we were really struggling with solids before this past week, he would keep his mouth clamped, but he would usually loosen up a little for about a half an ounce or ounce of food, and I could work it in that way.
Then, he started opening his mouth for it, and I thought we had made a breakthrough.
NOW, he not only clamps his mouth even tighter than before, he's also learned that if he shakes his head back and forth, he can avoid the spoon completely. And I don't push it. One, because there's no way to get it in without holding him down even if I wanted to. And two, because I don't want to create yet another food aversion.
So... I'd say 99.5% chance we ARE getting the g-tube. I guess I'll know more after Wednesday morning, but the more Matt and I discuss it, the more we feel it's what Jonah needs. He's just not picking it up nor is he showing ANY desire for solids. Twenty ounces is just not enough to sustain and grow him.
So now it's...
Do we do it here at Brenner's, trust that God will provide very humble, compliant doctors, educate them ourselves and just have them contact doctors who've done it before?
Do we go to Chapel Hill where they have one doc who has some experience with EB kids (vague and limited info on this one... have to check into it)?
Or do we try to do all this in Cincy? (Many days away from home, out of town dressing changes, many hours of driving either way, Jonah in a car seat for many hours post-operation, Matt with very little time off etc.)
Lots to figure out... trusting that God will make it clear. Feeling like we're probably in a time crunch and things need to start falling into place really soon.
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Haven't gotten an update on Tripp yet. Worried, praying, hoping for good news really soon. Will pass it along as soon as I hear something. You can follow his Caring Bridge Site Here.
Monday, October 26, 2009
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23 comments:
Praying for God's guidance and peace as you guys make these important decisions.
Praying as always, Patrice - if there's anything else I can do, don't hesitate to ask!
Love from TX!
Laura
You have made the proper decisions, based on prayers and education, so I have every reason to believe that you will make the right decision this time. Please know that my thoughts and prayers will be with you, Matt, and of course with Jonah. I want to ask a question that may not be too bright, but I will ask it anyway. If you have to have a g-tube, what is the procedure? Will this be a permanent fixture, or just until he is older? I want to know what I am praying for.
Know that there will be lots of people praying for you, what ever you decide.
Sandy W.
Wow. That's a lot to consider. I'll be praying for God's perfect plan to be revealed and for comfort as you make these hard decisions.
~Ashley
I've been reading your blog for a while but never commented. I live in Cincinnati, so if you come to the area for Jonah's surgery, please let us know if there is ANYTHING we can do! I would love to help out you and your family during this time! Praying for you and that God will guide you in your decisions about Jonah's health. You're his mama - you'll know what's right to do :-)
*Abby*
Prayers for you all.
I want to tell you how much my family appreciates your updates. We will continue to pray for him and you both.
God always guides us in the direction we are to go. I will pray that you hear Him loud and clear for this decision. I know for me it would be difficult to choose a doctor who did not have what I consider enough experience with EB just because that doctor may and should have a bit more passion and compassion. But, as we all learn, God's Will will be done and our own reasoning is usually way off.
I too am waiting for news on Tripp.
I have been following your blog since the beginning of little Jonah but have rarely commented. My sons issues are very different than Jonahs but I thought I would lend you some support and hope. Travis was born at 23 weeks 2 days gestation on July 29, 2008. He went through a lot but is a fiesty little 15 month old now and is as happy as can be. Feeding issues have been our biggest challenge since he came home after 5 months in the NICU. I read about your challenged with Jonah and can relate, and I know how incredibly frustrating it is. I am so beyond happy that Jonah is actually gaining weight though! that is wonderful. My son has weighed 16lbs for 4 months now.
BUT....here is the hope. He wanted NOTHING to do with purees. At first he showed a little bit of intrest and then after that, NOTHING. Clamped mouth, shaking head, screaming. (He also fights his bottles like no ones business)But the solids was the big thing I was worried about. Then he got a little older and started showing interest in what we were eating. But unfortunately he would gag on anything and everything that was even potentially solid. Puffs even. I mean everything. BUT THEN...about 2 weeks ago, he just started eating, out of no where, and NOT gagging and throwing up every time he did. It was amazing and now he is eating three meals a day. He eats scrambled eggs, yogurt, oatmeal, or fruit for breakfast, pasta or meats and cheese for lunches and dinner, veggies, goldfish, puffs. It was like something clicked. He is also very aversive but I find that when he feeds himself, he does much better.
Now like I said, I know things are different with Jonah,and I know that maybe those foods would be hard for him because they may causee blisters or whatnot, and hes still too young, but I just want you to know that even though he is not eating now, he still might surprise ya. And I am not saying you shouldn't get the g-tube. Its not a forever thing and you know what is right for your son. You know what is best. But just know that even with it, he may just start eating one day. I hope and pray that he does. And I hope and pray that you are able to make the best decision for him, which I know you will.
And lastly, I just want to tell you what an amazing mother I think you are. Seriously, you blow me away. I have many challenges with my little guy but nothing compared to the daily struggles you face with Jonah and I think that little boy is SO blessed to have you for a mother, there is no more perfect mother for him on this earth. You are amazing!
Praying for wisdom for you to know what the right decision is. I know God will make it very clear to you, since you are seeking his guidance. I will pray that the decision is very clear! I'll also keep praying for peace for you and Matt as you make the decision.
~Amy
MY son had Pertussis for 100+ days, which started when he was 7 weeks old, and didn't completely rid itself of his body this about 5 months--and it was only REALLY bad for about 2 weeks--and although the coughing was still bad after that, we were coping with it and it didn't seem so hard----All that to say that I think you are a WONDERFUL mother. With 3 other children--2 of them going to school every morning--and waking every 50 minutes to a baby with terrible coughing fits, and having to make sire he was still breathing when it was over with cuz he had blue moments--I felt like I was at the bottom of a pit that I would never get out of.
Then I found your blog from another's, and your story changed my perspective. I fell in love with a little boy whom I had never met, and not related to, and probably will never meet this side of Heaven--and his mother isn't that bad, either. LOL
I love that you are honest when you feel sad and lonely, I love when you are honest when you want to scream out to God, and I love when you are honest when you want to tell someone else where to shove it. God could not have picked a better mother for Jonah and for Gabe--you are walking, living testimony for them both, and I know I am a better person just for knowing you through this blog :)
I pray that God gives you the wisdom to make some tough choices in the coming weeks, and I pray that He makes then unmistakeably clear to you so that you don't have to burden much about them.
-Amanda
I wonder if you could get a private or medical flight to take him to Cincinnati so you could avoid a long drive.
If you are considering Cinncinnati for his G-tube I would suggest looking into Angel Flight http://www.angelflight.com/. My father is a pilot and volunteers with this organization. I believe you are in NC so this weblink would be specific to your area http://www.angelflightmidatlantic.org/ I continue to lift Jonah up in prayer!!
My thoughts and prayers are with you, as you make these decisions for Jonah. Is that the closest children's hospital to you? Has Matt looked into Family Leave Act? I think he can get 17 days a year with this, no questions asked by anyone. His Personnel department should have the info for him. I wish I was closer to help you out in some way. We will be praying all the way. You are doing what you need to do for your perfect family.
Blessings, Mari
Patrice~
I've got little Jonah on my mind, as always, and in my prayers, as always. I know that this isn't a "question" post, but figured I'd ask one anyway. If Jonah gets the G-tube, will he have to have it forever, and will he be able to still eat from his bottles and have solids with it? I don't know anything about G-tubes, I'm sorry. I guess I'm just wondering if it is going to supplement the nutrients/oz. he's not getting, or if it will be all that he is getting, and if it will be a forever thing.
God bless you and your sweet family, sweetheart. You are making the best decision for Jonah, and from your posts, I know it has been a hard one for you and Matt to come to.
I am reading down, so this post was the second I'd read tonight...here is another question for ya. What does "blurring the corn" mean? I know that I will probably never get an answer to that, you are so busy with little Jonah. I loved the pictures though :) even the blurred corn, whatever that is LOL!
Much love and many prayers coming your way~
Sara
http://www.angelflight.com/
http://www.angelflightmidatlantic.org/
free flight for those in need for medical care
My daughter has severe eczema and my son has stomach issues and they both use Cincinnati Children's Hospital. I love it. They are awesome there. Granted they are not as sick as your little, but that hospital is awesome. By the way, the Family Leave Act grants someone 12 weeks in a 12 month period. It can be continuous or on an intermittent basis. I am not sure if Matt used it when Jonah was born, but he could use that if his company has 50 employees.
Praying, praying, praying that God provides you with the wisdom and guidance you need right now. Hugs to you all for strength and support! :O)
Praying for you guys as you make hard decisions. My son Jonah, who was a 29 week preemie had a g tube for 3 years, for us it was a life saver. It allowed him to get the nutrition he needed to build up a strong immune system and to gain weight that he needed. Now at 14 you would never know this kid use to refuse food. One day he just decided food was ok at about 5 years old. The tube is not horrible once you get use to it and figure it out. You will need to figure out how to keep the skin around it clean without hurting your little J's tummy. This will just become another routine in your day. You guys are in our prayers, you are great parents and you can do this.
Patrice, please check on the Angel Flight or Pilots for Christ. It would make your trip if you choose to do the long one so much easier! No cost to you!
Praying for wisdom and discernment for you guys.
Patrice...As I laid in bed with a Tylenol PM haze last night, I prayed very specifically (I think...I can't really remember) for you, Matt and sweet Jonah! In all seriousness, I am praying for you guys, specifically that God will give you PEACE about whatever decision He has made for Jonah, and that if that decision is to allow Jonah to eat, that would be REALLY great! Still praying in Canyon, TX!
I put a lot of stock in that "gut feeling" and think that it's usually right. Jonah looks like such a sweetheart. :) I love reading his updates.
We'll be praying for you both and sweet Jonah. Something that you might look into is that some insurance companies will pay for a flight and hotel room (even car rental) for medically necessary travel, especially if his doctor recommends that he go there for the proceedure. Ella is on Medicaid as a supplemental insurance and when we go to Cincy they pay for everything. It might be worth checking out.
Good luck.
Katie
Mom to Ella, 2 years old with RDEB
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