This week I was convicted by the verse in James 1 "You have not because you ask not," because I feel like I've been approaching this whole feeding intolerance of Seth's as just a problem for doctors and time to fix. Granted, I've asked for prayer, but I feel like my own prayers haven't been as straightforward and faithful as they should have been.
Lord, if you are willing, please heal Seth's tummy for your own glory! And also for his good, that he won't vomit several times a day [a very upsetting, gut-wrenching (literally) experience sometimes]. Please heal him so he doesn't wake up out of sound sleep screaming with severe gas pains.
The other day there was so much pressure build-up from gas that before I could even get the venting syringe inserted into his g-tube the gas came hissing out of the clamped tube like an untied balloon having the air slowly let out. We have to use a 60 ml syringe because there is often a lot of residual undigested elemental formula (i.e., the kind that shouldn't require much digesting as it's already broken down!) that bubbles out with the gas. A couple of times it's almost filled the tube. So we have a baby who isn't growing adequately but we can't increase his feeding volume because he's not even digesting the food that's going in. Which of course then results in vomiting.
I know I am not alone in this; there is information and tips all over the Internet. My latest "what if?" is corn syrup solid intolerance. I can't find anything about gastroesophageal disease (GERD) causing such bad gas; that seems to be a symptom of reactions to ingredients in the formula/breast milk. I am going to call the GI specialist tomorrow to see what she thinks of trying a soy formula.
One interesting thing I found in my search for answers online was a strong association between feeding intolerances/GERD and breathing disorders. They tend to exacerbate each other. There are special sensors on the top part of the esophagus that react to the vomitus and trigger a reactive airway response. (I'm practically a doctor. Ha, ha. Hope I got that right!)
A lot of what I read says it just takes time and patience for babies to outgrow this. If that's how the Lord wants to work in this situation, He's clearly got our best in mind and He is trustworthy. But it's not going to hurt to ask Him to mercifully heal Seth sooner. We're told to boldly approach the Throne of Grace to find receive mercy and find grace in our time of need. (Hebrews 4:16) There are hundreds of "yes" answered prayers from the past year (not to mention my whole life and the whole of history), so I'm approaching the Throne again, grateful that I have Jesus at the right hand of the Father as my Intercessor who ever lives to plead for me. (Hebrews 7:25: Therefore he is able to save completely[a] those who come to God through him, because he always lives to intercede for them.") However, I do realize that "no" and "wait" are also answers, and it doesn't mean He loves me or Seth any less. His love is perfect and infinite, unaltered by my faithfulness or faithlessness in prayer or anything else.
By the way, Marcie rolled over on Friday and has several times since. So that's three out of the five so far! Seth loves to climb/crawl up his Boppy or up my chest, digging his head in the whole way. It's so cute! Gracie likes to sit in her seat and watch everything and or lie on the playmat and hold on to toys above her; when put on her tummy she just lays down and cries. :) David loves to hold his feet and stick his toes in his mouth. He also loves to grab and hold toys dangling above him using just his feet. Will and David and Seth are starting to feel our faces with their hands a lot. Will got the Johnny-Jump-Up going so wildly he banged his head on the wall. :} Oops.
So that's the scoop from here. Love and gratitude to you all!
Carrie
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| David and Marcie |
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| One of my all-time favorite pictures. The speech therapist is working with Seth learning to eat sweet potatoes, and Marmi (Gavin's mom) is having a great time while Seth looks rather stunned by the new experience. |
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| Seth appeared to need to hold on |
i hate to be another voice of "try this", but i'd rather at least mention it than not, right? Have you read any of Jordan Rubin's stuff? "the Maker's diet" and "The great physician's RX" and he has one out for children. we actually used the baby formula recipe in there to avoid stomach issues with zosia (wish i had had it with micah). granted it wasn't as bad as seth's but ya never know. it's base is goat milk (raw if you can find it) which is the easiest to digest. anyways, we'll be praying for wisdom and confident decisions for you guys, and healing for seth!
ReplyDeleteSomeone at my work mentioned goat's milk also. Apparently they had success with it in their family.
Deleteprayers for soothing for Seth!
ReplyDeletegoat's milk was the solution for our baby 23 years ago also.
ReplyDeletepraying for your babies...we know about babies waking up writhing in pain.
I read a book called hidden food allergies...great book...moral of book was anything that can cause gas may not show up until hours after eaten...we had lots of trouble with corn syrup, eggs, onions and soy (don't use if gas troubles)..but those were the main triggers seemed to me.
Jessie Cheek
Father, we know that you hear our prayers and praise You for all of Your Blessings. Right now, we lift up Seth and ask for Your merciful healing of his tummy issues. Please either just dispel them now, or give the doctors the knowledge of how to deal with them. Seth is Your child, Lord, and we know You love him and want only the best for him, but all he feels is pain and we would pray that Your timing be soon in healing him. Thank You for Your mercy and grace, and for the salvation that Jesus brings, and we pray in his precious and holy name. Amen. NKL
ReplyDeleteI have been following you journey since right before your babies were born. I am a NICU nurse and have worked with lots of "chronic" babies, so I wanted to give a suggestion for your vomiting issues with Seth. Ask if you can get Farrell Bags for him. You will have to talk with your homecare supply vendor and his MD but I have seen amazing improvements with babies who use this venting system. It continuously vents the stomach, even during feedings. Definitely worth a try! Good luck to you all!
ReplyDeleteHi Marie, Thanks so much for following and for commenting! Yes, we've got Farrell bags but haven't had much "luck" getting them to work. Food seems to back up into them but there's no gas ever filling the bag. Even when we vent him just using the g-tube, holding it up above his stomach (the instructions for how to vent gas), nothing come out much of the time. We have to use the 60 cc syringe and hold it lower than his tummy, then all the big ol' bubbles come out. Are we doing something wrong with the Farrell bag? They had it hooked up at the hospital, too, and it was the same - no gas in the bag. Hmmmm. I appreciate your feedback!
DeleteLove,
Carrie
He may still be too small for the bag to work effectively. Sometimes when a baby is using a Farrell bag the stomach is still so small that the pressure gradient of the Farrell line is lower than that of the stomach, therefore all the milk just takes the path of least resistance up into the bag instead of into the stomach. Also, it's important to note that no matter what some milk will go up the tubing no matter what, but air should also come out with it. Have you tried lowering the Farrell bag down? He may just be one of those kiddos that the instructions don't quite work for, especially since he is so little. I have seen great success with these bags for big time pukers, I'm hoping you can find a way to make it work for him! When is he getting all the air in his belly? Is it with oral feeds only? At rest? When GT feeds are going in? One thing I have done pretty frequently with little ones on bolus GT feeds is to connect the 60 ML syringe (no plunger) to the extension and allow them to vent continuously during oral feeds (tricky as you have to keep the syringe pointed up the whole time) and just intermittently push down any milk that comes up the syringe. You can also do this between feeds if you have something you can use to keep the syringe up- a bouncy seat can work if you can attach the syringe to the toy bar loosely so it doesn't pull at all. You can also adjust the height as needed with the tubing. Good luck!
DeleteCarrie, I don't have any answers, but I do have prayers. I continue to pray for Seth and for Will, David, Marcie, & Grace as well as for Isaac and you and Gavin. Seth looks so good. I know the pictures don't record the incidents, but I can't help but remember the times when I cried and spent the days in prayer that Seth would just be with us when next you posted. And there were tears of relief when the blog chronicled his improvement. You are blessed with the talent for allowing complete strangers to be a part of your lives. My prayers join yours in asking for God's healing hand to be on Seth! Love to you all, Diana
ReplyDeleteOnly you know Heavenly Father, what is going on with Seth, so we Place him again on your Alter asking for your healing, and the wisdom to the Doctors, to know what to do....And Please we ask for your loving arms to be around Gavin and Carrie(and Isaac and grandparents)as they go through this with Seth, give them your Grace Peace and love and perseverance to walk this Journey with you....I feel for your hearts Gavin and Carrie...Our disabled son..has had a digestive problem since he was young and many times we were in the ER with him and had to watch while he was screaming in pain...and not knowing what to do...then a doctor told us of a special diet, and now he is so much better....sometimes all we can do is place our children on the Alter of God and say...God he is your child ...Please help them... I pray for "Our Little Fighter" and will offering up my days,
ReplyDeletewith Prayer and Fasting...
Amen! Agreeing in prayer with you and those who are praying for Seth. Also praying for peace in your own heart, as a mom, because it is so hard to watch your babies suffer. In Jesus name we bless Seth with healing in his belly, with food that is digested, weight gain and peacefulness. We bless Carrie and the doctors with wisdom in this situation, knowledge on how to help Seth and patience to work this through. Carrie, be blessed with knowing that God is in control and His thoughts toward you and Seth outnumber the grains of sand on the seashore. He's thinking of you and all of your family constantly!
ReplyDeleteUsed raw goat's milk with our daughter 24 years ago because she kept getting sick with diff.things. She has been the healthiest of our three kids!:)
ReplyDeleteGoat milk was the answer for my sister when she was a baby 63 years ago. A few years later, it was what got my uncle through a very very serious bout of stomach ulcers
ReplyDeleteBlessings,
Gail Boemker
It's actually a nice and helpful piece of information. I am glad that you shared this helpful info with us. Please stay us informed like this. Thank you for sharing.
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Hi Carrie - I am friend of Karen from Ottawa who came to volunteer a couple of weeks ago. My son was a 29 weeker who suffered a NEC infection, bowel resection and has been tube fed for the past 5 years (we hope to be fully weaned this april finally).
ReplyDeleteThere is a system called a Farrel Bag which vents as it feeds so that gas can not build up in the belly. Here in Canada it's $9. It's a one time use system. It can be complicated to set up but works well.
Good Luck!
Susan in Ottawa, Canada
Our son was a 25 weeker and is 6 now and still suffers from severe GERD. He would throw up around 10 times or more a day when he first came home from the hospital at 10 months. He was put on domperidone, ranitidine, and then finally nexium. It does get better. He is six now and mostly only vomits when he has a cold or is constipated. He also has breathing issues and I find when his breathing is off he will vomit more. Hope it starts getting better for you. I know what it's like to watch your kid suffer and not be able to do anything about it. Praying for you as a family!
ReplyDeleteWe also did vent him with a barrel syringe while he was feeding. Just kept him in a chair and kept the syringe higher than his stomach. It seemed to work a bit.
ReplyDeletehola Carrie. Sigo el blog desde que nacieron los bebés.. Están hermosos! Te dejo un link de Ampap (Asociacxion Madrileña de PediatrÃa). Espero que en algo pueda serte útil. Mis oraciones están con vos y tu familia. Dios los bendiga, Ceci
ReplyDeletehttp://www.ampap.es/documentacion/protocolos/Vomitos_ERGE_2012.pdf