This morning we were talking to our doctor about how fussy and upset Brayden gets when he eats. It literally looks like it hurts him. We found out that there is a surgery they do on reflux babies (which sent me into immediate tears) but she doesn't think he will need it. They still have a few more tricks up their sleeves.
They increased him to the maximum dosage of Prevacid and he is already on the max dose of Reglan. They also switched him from Thick-It to rice cereal (though after the 8pm feed I don't know if we will continue with the rice).
So what do we need to happen so that we can go home? We need Brayden to take his bottles and not be in pain while doing so. We are praying that the extra prevacid will work but we won't know until tomorrow at the earliest.
They may try a few other things if the meds don't work, including a possible upper GI study, but I really hope it doesn't come to that.
Thank you for your prayers!
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50 comments:
I really hope the Prevacid does work. You need to get that gorgeous boy home!! He is still in my prayers, as are you!
I'm praying for Brayden and I know God is in control. Hang in there.
Poor Brayden :( I'm still praying for you and your precious boy. Praying that whatever it is that is complicating his feeding will get resolved so he can finally go home. He is so cute!
Hugs and prayers,
Heather~ On the Homefront
Bless his sweet little heart. I'm praying, girl. I know you're ready to be home with a healthy baby boy.
Lifting you guys up!
((HUGS))
Addison and I say a prayer every night for Brayden's recovery. We will start praying extra hard for him to start eating better! =)
Good luck to you guys! I hope he starts to eat better. You might want to check out www.parent-2-parent.com/forum It's a large community of parents dealing with babies with reflux. My daughter had severe reflux and aspiration and she did end up requiring a Nissen Fundoplication (the surgery your doctor talked about). It's a very controversial surgery that doctors seem rather quick to perform and very slow to inform parents of the multiple horrible problems the surgery often causes.
I hope for your sake you guys can figure out a way to make that sweet boy happy while he eats.
Emily
Mom to a baby who spent 8mos in the NICU.
Jenna,
That sounds an awful lot like what they had to do for my husband...and that was almost 35 years ago. He had a condition which prevented him from taking his feedings, and had to have surgery at 6 weeks old.
Take heart in knowing that this is probably a much better, safer surgery today than it was then, and know that if that's what it takes for Brayden to get well, he will be able to handle it!
We'll be praying for you all! ♥
Thinking of you and your precious boy! Sending hugs and prayers your way!
Hi Jenna,
I have been reading your blog for a while now, just haven't commented until now. While I am not expert on reflux ( I am just a mom who's son had it really really bad) I wanted to say I understand the frustration.
My son was a preemie and had terrible reflux, he was on (and still is) a high dose of Zantac. He cried through every bottle and had projectile vomit. They mentioned surgery to me too, but it never was needed. We tried thickening his feeds, but that didn't work because he couldn't suck it down. So for him, he ended up on the zantac and sleeping on a wedge. The wedge, really helped! He was like a completely different baby. He struggled a lot with his feeding, but that got easier pretty quick after the wedge. He slept on it until he was 6 months old.
I hope that they can find something that works for Brayden - reflux really is no fun! I understand the frustration oh it. Hang in there...he will get there.
Praying for you!
Denise
I just wanted to give you my experience with reflux and my kids (all 3 of them had reflux!). I struggled with the same problems with my son, Brayden. He had severe reflux and was in PAIN when drinking a bottle. I struggled with 5 different pediatrician doctors until I found a Pediatric GI specialist and I did LOTS of reading on-line. The problem with Prevacid is it is weight dependent. As the baby grows they need more medicine. At about 1-1/2 months of age he was on 15mg solutabs once a day. By 3 months he was on 30mgs...an adult doseage! Finally he was no longer in pain and a happy eater! So please go with your instincts....Your Brayden cn be a happy eater too, maybe he needs a much higher dose like my Brayden and LOTS of other babies. He finally grew out of the reflux at about 3 yrs old. He is now 5yrs old. If you want any more info please e-mail me at
Paulson2005@comcast.net I would love to help. I know what its like having a abay in pain eating but starving cause they dont want to eat and hurt. Hope this helps!
Atousa
mommy to Brayden, Cailyn and Brynn
Thank you for the update on how to pray. I happened to see a table of Baby Brayden Warrior t-shirts at bible study last night. Our Monday night bible study is holding you up in prayer.
Hi Lil' Brayden...You don't know me but I found your mom's blog a few weeks back and have been reading about your amazing journey through the NICU! I had 3 lil ones in the NICU in So. California just about 4 months ago and they have gone through A LOT of what you are going through...Sweet lil' guy, you are a gift from God and you are STRONG!!! Those doctors are good and they will find what works best for you and our body! STAY STRONG!
Jenna, I hope you don't mind me suggesting something...I recently had triplets and they ALL got reflux by week 2 of age! They say it is very common these days! My lil' girl was having the same issues it sounds like Brayden is having! It got so bad she was loosing her sweet lil' voice and was SCREAM EVERY TIME she ate and for about an hour after....We switched her formula to a lactose free and thought we found a solution and then it started all over again about a week later....I called our doctor in tears, I couldn't stand seeing our lil' angel is pain anymore. The nurse called their Enfamil rep. and she suggested trying the Enfamil Gentlease....IT WORKED!!! Within about 3 feedings her "fits" were GONE!!! This might be something to suggest to Brayden's doctors! The rep. said that because the Gentlease has pre digested proteins their bodies don't have to work as hard which causes less acid. I just was reading tonight's update and it sounded just like what we went through after we got home. I hope your doctors find a solution to his problem so you can finally take your sweet boy home!
Much Love....Big Hugs!!! We will keep praying for Brayden and your family!
~Mandy
Bless his heart! I am still praying for sweet Brayden! Hopefully the prevacid will work!!
You are all in my prayers...I hope the prevacid works..
I just read your blog night and my family and I will pray for you and that handsome little boy. You will get to bring him home real soon.
God is going to make it all better...I just KNOW it!
Hang in there Team Brayden :)
Stay encouraged! God is faithful.
Hi. I stumbled on your blog right after your precious little boy was born and have been following since. My little boy who is 5 months now has been hospitalized for a month now and they just did that surgery they spoke to you about (was it a Nissen?) He too was on the max dose of Prevacid and Reglan. He also had some other complications, called pyloric stenosis. He had 3 upper GIs. I would definitelly ask to have a upper GI done, that can give them a real good look to see what is going on. Many prayers as I know how frustrating it is when you just want your baby to eat and not be in pain!
I am so sorry that you all have to go through with this. Please know that I am keeping your sweet boy in my prayers.
Oh Jenna, I'm sorry! Prayers are going up everywhere!
Oh, I hope the medicing does the trick! Praying!
I really hope the prevacid works. Poor little guy!
Still praying here for you little guy.
Jenna, I am still praying for you and Brayden. Praying that he gets to go home soon!
Poor baby. I am still praying that Brayden gets completely well, praying for wisdom for the doctors, and praying for your stamina. I know you are so ready to have your sweet boy home.
Oh Jenna, I am still praying for Brayden...guess I better step it up some more! Hope things get better soon for you all!!
Reglan made my son's hands tremor really badly. I didn't like it much. I think the surgery you're referring to is a fundoplication. I have no idea if I spelled that correctly, but it basically ties off an area to prevent reflux. They recommend it due to aspiration risk. Aspiration can cause pneumonia. It could be that he will really grow out of it or maybe he'll require the surgery and not to have to worry about the pain. It's something they didn't want to do on my son because he didn't aspirate. We're praying for you here in Atlanta.
I am praying the prevacid helps. I can't wait to see him going home healthy and happy!
I have been praying daily and constantly that lil brayden will start eating pain free and get to come home soon! I know God is going to help him out on this one! Also, praying for you strength!
I am praying for you guys so much- I KNOW how you are feeling, because we went through the EXACT same thing with our son. The good news is that they do grow out of it- at 9 months Eli doesn't throw up much any more. But it is incredibly difficult while you're in the middle of it. There are several things that we tried that really helped- I don't want to just offer a ton of unsolicited advice, but if you ever want it, please contact me!
Hang in there Brayden and know that there are tons of people praying and pulling for you :)!
Watch out for the formula that you are using...I had a similar situation. If it is soy, you should stop and switch to one with predigested proteins. Have you consulted a pediatric gastroenterologist? My heart goes out to you--but your son is BEAUTIFUL! Hang in there...
I'm so sorry this is happening. I will pray very hard that the prevacid does work and Brayden can go home eating and in no pain.
You don't know me, but I've been following your blog since little Brayden was born. We had a similar situation with our littlest boy when he was born in April. He is 9 months now and is doing great but even with all the reflux meds he wasn't doing any better--we were thinking surgery was our only option left and then they tested him to see if he was allergic to milk and that was it! They switched him to a hypoallergic formual (it smelled TERRIBLE) but it worked. We tried the soy, lactose free etc but this was the only thing that worked. He was on reflux meds until he was about 6 months old and now is off the meds and is still drinking the hypoallergic formula. It may be worth a shot. I usually don't post comments but in this case I thought I would tell you about our situation hoping it will help. You will all be in our prayers!
I have been following your blog and praying for your sweet family for several weeks. My son had acid reflux as well and Axid was like a miracle drug for him! It really helped coat his gi track and heal the reflux. Maybe he would have some luck with that? Praying your sweet baby gets better soon and that you can all be home together, healthy, very soon!
As hard as it is to stay, I think it is good for you to have the drs helping get the reflux managed. It is so hard to get that done at home. Lots of prayers that he will be home soon!
Hope everything works out. I'll keep you in my prayers still! you are such a strong family and a shining example to everyone around you.
I'm still praying that his little tummy starts to cooperate! Keep us posted!
Praying that they can figure something out before it comes to something more invasive. Keeping you all in my prayers!!!!
Hi Jenna, Praying they will find something that works so that the little guy doesn't have to go through surgery. Keeping you in my prayers.
Praying for Brayden...& Mommy & Daddy :)
Stepping up the prayers....come on Team Brayden!!
Poor little man,I know from having reflux it can be frustrating. Hang in there guys we are still praying for you to go home soon....Barb
Poor sweet Brayden!! We will continue to pray!!
Jenna, I found your blog through Kelly's Korner. I just wanted to say hang in there! Your story is all too familiar for my family. My daughter was in the NICU for 3 wks after she was born, intubated, GI bleeds and multiple other problems. The biggest being that she didn't want to eat. I will never forget hanging onto every feed, praying and hoping it would be successful. I never thought feeding a baby a bottle could be so difficult ( and I am a former ACH NICU nurse). My daughther Alexa had horrible relfux too, we had the swollow study done, which really did nothing but to say that she has reflux. The thing that changed our situation was a max dose of prevacid to twice a day. I don't know if you guys are doing it this way, but it was recomended to us by one the GI specialists there at ACH. He said that babies metabolize prevacid twice as fast as adults do, so they need it tiwce as often. Maybe you guys could talk to the GI Dr's there. They were so encouraging to us. Hope this helps, hang in there. We will continue to say prayers for your family and sweet baby. I know how frustrating the feeds can get, but he WILL get better, I promise.
shelleycharton@yahoo.com
I just found your blog and am excited to begin praying for Brayden.
My love,
Rachel
i found you a while back and have been watching your journey. praying for good reports!
my kids have each suffered with reflux. the end result was different for both. one prevacid one zantac. each little one is different. just remember that you are the mama and will know best what seems to be working. continue to advocate for your little man. it's a frsutrating "illness", but they eventually outgrow it. hang in there. i agree with others who have said to consider increasing dosage, but also possibly different medicine all together. my son tried 4 meds and about 8 different formulas before we figured out what worked best for him. you've got a great team working with you! stay strong!
Prevacid has helped my kids--I will pray it helps and you don't have to do any more testing! My daughter had the upper GI and they found that she really did just have bad reflux, and that was causing enormous pain for her. Praying that is all it is and you can go home soon!!
I am praying for yall, that Brayden wont have to have the surgery. But, my daughter had the same problem and she had her surgery done at childrens for it and it was wonderful! I was also scared and nervous, but it was absolutly the best thing they done for her. I hope yall get to go home soon! Yall are in my thoughts and prayers!
Hi,
I've been following your blog for awhile and have been praying for your sweet family. My son had very severe reflux to the point that we counted the minutes he digested food and the dr.'s were thrilled when he could keep food down for more than 30 minutes. We tried many options for 18 months and then he had the Fundoplication. I highly recommend the surgery, it saved his life. I just wish we would have done it when he was 2 months old versus 18 months old. God Bless you and your family.
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