I'll be honest. Today was a rough day. This will be short.
Jonah gushed one time yesterday and three times today after probably five days of not gushing at all. Needless to say, I'm completely frustrated and confused. I don't get it. He barely had enough today to stay hydrated.
His tube has been leaking more than usual today. When I finally got him to drink an ounce of Apple Juice, it leaked out of his tube and all over his shirt. Yes, the little flappy was closed. I don't know why or how it leaked.
He had his fifteen month check-up this afternoon, including three shots and getting the granulation tissue that's growing under his tube cauterized with Silver Nitrate. He was completely freaked out any time they touched him to do anything.
I had my annual check-up at my OBGYN office. It was much more difficult to be there than I anticipated. Facing the happy memories of being pregnant, the horrible memories of Gabe's death and the anxiety I felt with my pregnancy with Jonah, and facing the reality that I'll never be pregnant again kind of slapped me in the face. I hated it.
And to top things off, Jonah is regressing on his solids eating. He will only eat a little bit of soup (sometimes) as compared to 1/2 cup twice a day before. And remember the yogurt he loved that one day last week? Well, now he gags, cries, and pushes the spoon away when you try to feed it to him. Same yogurt. Same time of day. Same spoon. Frustrating.
I know these are all little things in the scheme of things, but all piled into one day... too much.
I'm hoping that maybe Jonah just has a little tummy virus or something and that we're not going to start having those bad tolerance issues again. A lot of the vomit today came from oral feeding. Some came after I had used the tube.
I really want to switch to all blended foods through the tube instead of formula, but it is so hard to get the calories he needs in small enough quantities that he can handle it, while still getting all the food groups, vitamins, and ounces for hydration he needs. But man, I'm reaching my limit with formula.
It's been a long day. I'm glad it's over. Tomorrow has got to be better.
25 comments:
Sorry you had such a hard day. Praise the Lord that His mercies are new EVERY morning!! Praying that tomorrow will be a better day.
I'm sorry the day was so hard. We aren't having any more babies and nothing is worse than sitting in that OB office with preggos all around! I'm sorry you had to face that, along with the other challenges. Praying tomorrow will be better.
I know nothing about anything you are going through, so i don't have much advice, but I do n=know something you can try to get Jonah to eat. My son loves when I get the yogurt (Gogurt) in tubes and freeze it. He eats it like we used to eat those Popsicles that you squeeze up. Maybe he would like yogurt more frozen. My son thinks it is ice cream :)
wish i had words....i hope jonah's day is better tomorrow....
and i know that harsh icky reality of realizing you aren't having any more kids (by really no decision of your own) and having to sit in the OB's office.....((hugs))
Praying for you guys from Rhode Island!! We are going through many issues ourselves also and Skye isn't eating either :(
Love you, thinking of you, praying for you. Clear eyes, full hearts, can't lose. ;)
I'm SO sorry, Patrice- as usual, I'm at a loss for words. Please know that you are loved and I'm praying for you. And as always, praying for that precious boy.
Love from TX,
Laura
I'm so sorry that you've had a rough day. I hope and Pray that Jonah will desire to eat and that your stress will ease.
I don't know if you know about the Simmons Family they have a heart boy and she just recently made the switch to blended foods for him and she has some wonderful ideas and ways of adding more calories in small doses.
http://simmonsfamilyupdate.blogspot.com/2010/04/blended-diet-101.html
Prayers coming for you, sweetie! Oh my heart aches to hear you struggle after such a great weekend. He might have been so stressed with the doctor's visit and all that ANY food was feeling it in his tummy! Man oh man! Prayers happening and I will continue! Jennifer of Southeast, NC
I know there are not REALLY any words one can offer to you, that can take away the things you face, on a daily basis. My heart is heavy for you tonight. I can only imagine how you felt today in the OB office...I am so sorry...that you have to face those things. Thinking and praying for you, your broken(and frustrated) heart and your family tonight.
Hi Patrice,
Ive been following you guys and praying for you sine Jonah was born... I think you should chat with Andrea over at www.simmonsfamilyupdate.blogspot.com, her son Owen has a heart condition and a feeding tube.. I think he used to gush a lot when he was on formula but she switched to a blended diet and now he is doing awesome... Maybe she can help you get all your vitamins, food groups, and gushing under control. (whew, that was definately a run-on ;).
Praying for a better day tomorrow
Hi Patrice, so sorry for the day! I remember those days where it all snowballed and I'd go to bed wondering how I'd manage another day like it.
As for the apple juice leaking - it was most likely leaking from his stoma and not his button. His button has an anti-reflux valve that prevents backflow even when the flap is wide open (although they do quit working after awhile, they work well enough that it's almost unheard of for it to leak while the flap is closed). I know for us the stoma is leakier when there is pressure in the tummy so venting more often will help. Also, anytime the motility slows for any reason the stoma is likely to leak. I'd guess he wasn't feeling well in his tummy based on his lack of eating AND the leaking stoma. Slow down and give his tummy time...when the leaking stoma subsides that's the sign that his motility is back up to normal again. Also, are you checking the water in the balloon? Checking it weekly will ensure that it's inflated enough and the button isn't getting floppy - a too floppy button will leak at the stoma. It's all a learning game.
As for the granulation tissue, it's so hard. I'm sure that with EB it's a constant battle for sure. We struggled with it for a long time. At one point we were seeing an ostomy nurse who was burning it DAILY with silver nitrate! It was not a good thing - and didn't fix the problem. Knowing that Jonah can't have his stoma open to air and gauze free, the granulation tissue is going to be happy. It loves warmth and lack of air flow. One thing I've found that helps a lot (and I still use it everyday) is Calmoseptine cream. You can get it at Walgreens at the pharmacy counter. It's a wonderful barrier cream meant for tube site leakage. It's amazing. I would recommend putting a layer of it around his button and underneath it right on the stoma when you dressing change. http://www.walgreens.com/store/catalog/Cleansing-and-Disposal/Ointment/ID=prod3285901&navCount=149&navAction=push-product?ext=gooHome_Medical_Top_Performing_New_calmoseptine An $8 tube will last months. I can't recommend it enough. It really does wonders to keep that granulation tissue under control. Please, feel free to ask me anytime you need gtube help. SupieSmith(at)yahoo(dot)com
That does sound like a rough day! Keep up the blended foods.. you will find your groove and it will work out. Think oils, beans, grains and meats (even baby food meats have 100 cals in some of the tiny jars). It'll work out.
I don't know if this would work for Jonah, but Owen has a special gauze with the silver nitrate on it that I use around his gtube site. It's awesome stuff. It's called mepilex AG. It's not sticky, but it stays put. I can send you a package if you want to try it?
Tomorrow will be a better day!
My little boy was a horrible eater, and still is. It was comforting to me to just rely on the formula. He was on formula for 2 years. I think you should just relax on the solids for now and go with formula. He gets everthing he needs from it and it will be a win win for both of you...for now. Pick your battles. As long as he's getting nutrition that's all that matters.
I hope I haven't upset you with my thoughts that are worth a penny. :) I love your blog, your attitude, and think your a great mom.
Wishing you a better day tomorrow.
Stephnie
Hi Patrice: So sorry that you had such an awful day. Keep your chin up, things will get so much better. ALL babies have off days and Jonah is no exception.
God Speed for the feeding issues to be resolved. It will work out, you'll see.
Give Jonah a kiss for me. Love you guys. Leah's Nana
Sorry for the rough day--you had a lot going on for one day.
Praying you got a good night's sleep and that today brings back the sunshine & joy.
Love all of you
so sorry your day was bad honey! I'm praying that today will be a better day for you and Jonah! love you guys!
Erica
Praying for you always and all that you and Matt must deal with on a daily basis. Nobody has any idea how frustrating and tiresome it must be for you...and at the same time...worth every minute for that precious Jonah.
I have been following your blog for months and months now...I just put your button on my blog.
Take care and I hope that today is a better day.
Angie
www.missingmarkallen.blogspot.com
You're a great Mommy! God gave you Jonah because He knew, you'd be his perfect Mommy. I'm a nurse and I know right now everything's really rough, but you're doing wonderfully; you notice everything you need to notice, the suttle changes in his appetite and tube. You're taking really great care of him and although right now is very frustrating, it won't be like this for long. It will get better. Tomorrow's a new day with new grace. Take a deep breath, praise God and love baby Jonah. God will grant you what you need to keep being Jonah's perfect Mommy. Just know you have many many people loving and praying for you everyday, even though we've never met! God Bless!
Patrice,
Our sons have different issues, and so you and I face different struggles. But I had a horrible day last week, and it was all I could do to hold it together. I'm so sorry for all the regression it seems Jonah is experiencing and for the sadness and hopelessness that you're feeling. I hope and pray you have a better day today.
Angela
ugh is right. hope tomorrow is a better brighter day!
I'm sorry you had such a rough day. Those days definately put us in a funk, don't they!
We do blenderized food during the day, and formula overnight. It's easier on my Peanut's tummy, and I really like doing pureed real food. Like you said though, it's impossible to get enough in her stomach when she only tolerates small amounts. So we do the little bit of formula overnight to keep up with our calories and hydration.
The fundoplication is the real lifesaver though, in our case at least. Without it I am sure we would be where you are with the gushing.
IF U dont already, check out this blog. this woman feeds her son a blended diet thru the tube. maybe can help? we all have bad days, maybe he is just having a bad day, nothintg to figure out, u kno?
http://simmonsfamilyupdate.blogspot.com/
Hi Patrice,
I'm from a small town in Saskatchewan, Canada, and I try to keep up with your blog. I just wanted you to know that I pray for your sweet Jonah all the time. Not only Jonah, but for you and your husband. That the Lord would give you strength to get through each day and make each trial a blessing.
May the Lord richly bless you!
Malarie
Hi Patrice,
I have never left a message and just wanted to let you know that I pray for you and Jonah all the time. You are such a good mommy and I am in awe of how you are able to handle all on your plate with such grace. I have 2 little ones and always think of you when I am "complaining" about something or stressed b/c I am tired. What an inspiration you are!!! I do hope things get better soon.
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