And then he took a nap for two hours and fifteen minutes!
And then Matt came home and I got to go to Target (true it was for formula and Pediasure, but who cares)!
It has been an awesome day!
Our appointments have been moved up. We have our clinic appointment with the surgeon on Monday at 10:00 am, and we will meet with the anesthesiologist afterwards.
Jonah's surgery is scheduled for Wednesday, but if he continues eating okay, we'll postpone it until after Thanksgiving. Of course Jonah is our priority, so if he starts having really low days again, Wednesday it will be. But man, I'd love to be able to wait until after Thanksgiving. I could really use a holiday. I need to get out of this house and eat lots of carbs and spend time with family. We are supposed to head to Florence on Wednesday night, and Matt's sister and her family are flying down from NY, AND all the extended family (from Florida and Alabama) are coming too. And we'd love to be there.
But if Jonah needs a g-tube on Wednesday, so it goes. We spent Easter in the hospital. We can do Thanksgiving there too if we need to. Unfortunately the hospital is on major flu precautions, so only Matt and I will even be allowed on the Pediatric Floor. That will be weird. When we were in the NICU, our friends and family basically took over the waiting room. It was ridiculously wonderful. :)
Regardless, I think Matt and I have decided that we are moving forward with the g-tube. He's just too inconsistent, and we feel it's what's best for him. It will help Jonah be better nourished and more consistently so. It will help me be a better mother. And it will provide a way to give Jonah the medicines and vitamins he needs without making him hate food and liquid coming toward his mouth. I also think it's smart to have a "back-up" for when he's in pain and can't eat. I think it's the right decision.
But it's still scary, and it still sucks. It just does.
So now I'm praying for wisdom as to the when of it all. I'm praying for wise, careful, and humble doctors. I'm praying for Jonah's sweet trachea, for no damage, for smooth sailing.
And I'm praying for many, many, many more happy days.
50 comments:
Wow!! 22.6 ounces!! :o) That's really great, Patrice! :o) Oh, I do hope and pray that he will be able to continue to eat like this! So glad you had a great day!
What a wonderful post. I know the ups & downs of feeding an inconsistent child and I'm so happy for you because I know what a wonderful victory it feels like when everything goes well! Enjoy the day (& the night, too!).
I will continue to keep you in my thoughts & prayers for the peace, wisdom & comfort as you approach the g-tube experience. Hang in there - truly, you are an amazing mother and an incredible inspiration.
We continue to pray for sweet baby Jonah... and we'll pray specifically for a well-functioning trachea. In the meantime, keep remembering that God does answer prayer, Patrice... and He shows us, over and over again, just how much He loves us. During all the down times, the up times, the pain, the joy, the grief, the laughter, and the tears... He is with us. He will be with you through this next season as well, just as He was through the last.
The Starrs in Colorado
First of all, that is a great picture of you two!
I'm glad you are at peace with the decision to move forward with the G-tube. When we first agreed, I thought we'd say OK, they'd take a while to get the consult with the surgeon and then longer to schedule the surgery. I was fine with a month out! Instead it was all done in less than 2 weeks! That was better for me though, I worry too much if I have extra time!
I pray you have wise drs who educate themselves and are patient and gentle with Jonah! I pray that his little body gives way for the intubation and surgery. I pray that no damage is done and he comes out better than ever! I pray you continue to have peace and comfort that only our Savior can give!
Way to go Jonah!!!! Chug away little buddy, chug away!
That's great news! I've always been told that a baby won't starve himself and will eat what they need to get by. Jonah probably needed that extra nutrition today (and I wouldn't be surprised if tomorrow is maybe another bad day since he kind of tanked up today).
I will continue to pray for peace for you and Matt as you move forward with your new plan, and that God will guide the doctors and anesthesiologist to do exactly what needs to be done to only help Jonah and not create any new problems.
~Amy
keeping you in my daily prayers
Way to go, Jonah! So glad it was a happy day. I'll pray for God to protect Jonah through the surgery and to especially protect his trachea. And I hope you'll be able to wait until after Thanksgiving - I agree, you need a good carb-fest!!
Love that pic of you two - you both look very happy!! Give him a hug from his friends in TX!
Love,
Laura
I always read and hardly ever comment, but I did have a question. When he gets his g-tube will you continue to offer the bottle and then just put the rest in his tube when he is done sucking? I hope he continues to be a trooper with the eating, at least until after thanksgiving!
That's a lovely picture! Glad you had a happy day - I'm always happy for you when you can squeeze in a Target run!
Continued hopes and prayers for a healthier, happier Jonah!
Praying with you for everything you mentioned. I'm so glad that you had a good day and hopefully tomorrow will be even better!
Praise God for the glory! We read your posts as a family and this one brought joy to all of our hearts.
I too pray that this can wait until after the holiday but God's will is sometimes (often) not what we planned on! You can trust though, that as He has carried you all this far, He will continue.
I pray the doctors have tender hearts and hear God speaking to them. I pray the nurses are kind spirits who will realize what you have all gone through already. I pray that God will continue to keep Jonah safe from all of the "what ifs".
Happy Day! I pray you have another!
We love you - Thanks for the picture.
(((Hugs)))
Continuing to pray whatever the course may be & for only the very best results.
Beckie in TN
Woohoo...way to go Jonah!
The fact that you are at peace with your decision regarding the g-tube means you are making the right decision for you, for Jonah, and for your family.
Still prayin' for your little Jonut!
Great to hear about your wonderful day.
Question from someone who's never encountered G-tubes before--can someone still eat in the regular way once the G-tube is put in? And I assume it would be removed once Jonah is old enough to eat regular food and like it--is this true, or do older kids/adults with EB use them, too?
Thanks for sharing all your ups and downs! We continue to pray for your whole family.
Beautiful Mommy, Beautiful Baby
Now that's the kinda post I like to read!!So Giddy for you that it was such a great day! Boys can be such stinkers! Praying you have a great holiday, in the hospital or not...either way may you spend it with Jonah :)
p.s. cuuute pic of you two!
Many prayers for you guys. I have family in Alabama, too (btw). I hope Jonah continues to eat better and can wait until after the holiday, that would be great :)
Much love ro all of you guys,
xoxox~
The photo of the two of you brought tears to my eyes! It is SO obvious how much you love that precious son of yours. I pray that you can wait until after Thanksgiving and also for many, many, many more happy days like this.
WONDERFUL!!!! Maybe jonah has sensed you are more relaxed & are leaving it up to him to eat when he wants to. Keep up the good work Mr. Jonah & you might get some mashed potatoes & gravy..maybe even some sweet potato pie (yummie).
Will be praying for God's will & blessings to be showered down on you, Jonah & Matt.
Great picture--love all those smiles
Me again...Jonah must have talked with Tripp & Tripp told him he had better straighten up,'cause momma was through messing around..she was going to pull out the big guns called "surgeons" and Tripp had been down that road & it was no fun.. Jonah is such smart boy--he listens to his buddy.
Praying for today to be as great as yesterday...Hopefully Jonah is learning that eating some good tasting stuff is not so bad.
Love & prayers still being sent
I'm so happy that you and Jonah had a good day! I can imagine the decision to get the g tube was so hard but I'm glad for you that you are at peace with your decision. The picture of you and Jonah is great! What beautiful smiles.
~Ashley
Go Jonah! What a relief for you to have your sweet boy eat so well. Praying for another good day today.
I am with you...praying, praying, and praying!
I have a message for Jonah: "Way to go Champ!" Just when you are feeling so low, he lets you know he is going to be okay. It's wonderful to see you and Matt on this journey too - so great you are on the same page. I'll be joining you on the prayer that he be able to hold off until after Thanksgiving so you can share him with your extended family. Love the sweet picture of your sweet little boy!
awww great picture! I actually gasped aloud when I read 22.6 oz!
He is just so cute! Sorry that you are having to make such decisions... especially since it may affect your holiday.
Will continue to keep you in my prayers!
Keep the Jonut pics coming!!
Hi Patrice:
So glad to read the happy blog. I sense that you are at peace with the gtube decision. I think it is the best for everyone, especially for Jonah. I still don't know how you guys do it, everyday. You EB mommies are just awesome. I am inspired by you, Meg and Courtney. Hang in there and God Bless You all. Love Leah's Nana
Wow! that is so amazing!! He sounds like my daughter. She goes a couple days and won't eat anything and then one day she wakes up eating and goes to bed eating - like she's storing up for winter or something! BUT - I know unfortunately that doesn't work for Jonah - EB needs that constant nutrition, not once a week nutrition overload.
I'm glad that you are through the struggle of the decision and are at peace with what needs to be done.
Definately praying....
Janel
What a tough decision you and Matt have had to make. I am thankful that you have found peace in your decision. That will make the rest of these coming days easier. We too will be praying for Jonah and his sweet airway.
Ping for you all ... and even more for sweet Jonah! Take care young man and hope the g-tube works wonders. I'm sure it will.
Hi Patrice,
I haven't checked your blog in a few days, and I just got caught up on the g-tube. I think it is a great thing that will really help you. But a thought came to my mind. You said that you weren't waking Jonah up anymore to eat, and yesterday he ate better. Maybe he will eat better if he sleeps more at night.
I'm not criticizing in any way (please don't think I am). Just a weird thought that made me think you may be able to postpone the g-tube until after Thanksgiving so you can spend that time with family.
Praying for God to show you the correct time and to give you rest. Thanks for keeping us updated and sharing Jonah with us.
Praying from Texas,
Shannon
Oh, yay! So glad you had a better day! Continuing to pray for you and Jonah and Matt, for the doctors, and that you get your lovely Thanksgiving. There is just nothing like being surrounded by family.
That is good news to hear. I do think the G-tube will make things easier for you and for Jonah. I had to laugh getting out means going to Target... My getting out by myself is going to the store LOL things so change when we are mommies...
Yay!!! We keep praying for you guys...hoping for the best outcome possible. Enjoy your weekend and thanks for the updates...many hugs and kisses to sweet Jonut!
I am praying for you Patrice. I cannot imagine how hard this is. I know that you are doing your very best to choose what is best for Jonah. You are a good mom and you are doing all you can. Blessings.
Way to go Jonah!!! You rock, little man. Continued prayers for your family :) I am glad you and Matt were able to come to a decision that you feel good about in regards to the G-Tube. Prayers for all of your nurses and drs (have to mention the nurses first, come on, I am one!!!!) that will be caring for Jonah next week (or whenever the GT surgery happens). Have a nice weekend (and keep up the good work Jonah!!!)
Erika from IL
Yay for happy days! Praying he gets to eating good so you all can join the family for Thanksgiving! And also praying for direction and wisdom for his doctors and nurses.
I'm echoing your prayers....
I know how hard it is to hand your child over to surgeons - and of course, you have so many more issues to deal with.
I'll be praying that you'll be able to put it off until after Thanksgiving, and for God's will to be done.
I keep thinking that Celine Dion song "Beautiful, beautiful, beautiful baby boy...." when I see pictures of him, especially smiling and up to his tricks! Praying for wisdom for you and wisdom for those who will minister to him in medical ways. Happy Thanksgiving to my favorite family in your neck of the woods! Jennifer in Southeast, NC
We join you in prayer for wisdom and peace!! Beautiful photo!!
I'm SO glad you had an awesome day! I am praying for even more awesome days! Hey, sometimes I look forward to just taking out the trash, because then I can get a few minutes of air and sunshine when I've got 3 sick kids. A mom has to get some freedom when/how they can! I'm glad you got a Target run this week.
I have been reading your blog since Jonah was born, but don't know much about EB and G-tubes. Is that something that he will outgrow as he gets older? If he gets to an age where he can eat without problems, would they then remove it?
Praise God. I'm so thankful that he finally ate really well. I'll keep praying you can hold off the surgery and enjoy Thanksgiving with your fam.
Oh and what a beautiful picture, Patrice! Absolutely gorgeous!
Sending lots of prayers your way. I could feel your joy in this post and I have a huge smile on my face while writing this. You are amazing. Matt is amazing. Jonah is amazing. Thank you for sharing your ups and downs and allowing me to fall in love with your beautiful little boy. His big blue eyes melt my heart! Keep up posted! :)
Glad it was a great day...way to go Jonah! Keeping up the prayers.
YAY! Still praying...
PS What a gorgeous photo!
praying, praying, praying!!! I hope today was a "happy" one too!
we are praying for consistent eating through this weekend and next week so you can be thankful with your family!
Dear Heavenly Father.. we know that YOU are the ultimate Healer, Restorer and maker of ALL things. I know that YOU are able in all situations. I know that YOU are wise above all understanding. We are TRUSTING that You have given your promises to this family and to Jonah particularly that Your plans are to prosper him and not to harm him. We ask that you would bless Jonah's team of medical professionals. Everyone from the food service staff to the surgeons, the rad techs to the nurses. I ask that You would give a special blessing to his surgeons and doctors. That You would bless their families, their finances, their patients, their friends so that their minds would be open and clear to hear the plans that YOU would have for Jonah. So that ANY stress or obstacle that would inhibit their mental clarity would be REMOVED. I ask that you bless these surgeons and doctors with patience, compassion and understanding beyond measure, widsom, passion and knowledge without ending. That YOU would become their hands and feet and that all THEIR paths would be blessed in order that they would in turn bless Jonah. God we ask for Your hand of grace and peace to be with Patrice and Matt as they embark on this journey. That You would surround them with Your arms larger than life and that they would rest in Your arms. Most of all, Father God, we ask that You would continue to hold Jonah near to Your heart. That You would keep him safe and pain free. That You would continue the miracle that You have continually shown us in his life. God we believe that You are able and willing to allow this miracle to continue in his life. We are standing together, firm in your promises that Jonah will go through this surgery and that not ONE hair on his head would be harmed. We believe and AGREE that there is NO ROOM for Satan in this room, in THIS home, in THIS life, in THIS surgery, in THIS hospital. You have said whatsoever is bound on earth is also bound in heaven and whatsoever is LOOSED on earth is also loosed in heaven. We are binding anything wrongdoing or accidental harm that would come against Jonah. We are loosing, complete healing, peace, joy and MIRACLES. We are believing that it is ALREADY done and that You have already placed your perfectly timing and hand in this situation. That you are guiding each step on this path and that YOU alone will be orchestrating this surgery. We thank You Heavenly Father that we can come to You and REST on your firm foundation.
In the name of your most precious son Jesus, we pray... amen.
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