We rushed back to the NICU and I couldn't find his nurse (she'd never been his nurse before so I didn't know who I was looking for which didn't help) so I picked Brayden up and held him until our Nurse Practitioner came over to check on us. His ultrasound came back fine which relieved me. Then the doctor came over (she was doing rounds) and said that she wanted to go ahead and do an x-ray as well so I started to panic again. Long story short, that came back fine as well. So basically, they really believe that he just has reflux, and doesn't have any bigger underlying issues.
Our wonderful occupational therapist was back today to work with Brayden on his bottle. The doctor decided that the thickett (like cornstarch) that they had been giving him was actually making his reflux worse so we ended up taking that out. Brayden took 20ml's out of 45 (he didn't get an increase today) and so we were pretty happy. I think that is the best he's done thus far. I just hate seeing him scream and cry because I know he's in pain.
The doctor also told us that she thinks that part of his problem with the bottle is the fact that he is on the methadone for his withdrawals. She thinks that once he is off of that feeding should improve. Tuesday he will be totally off of it...they are taking his wean very slowly because they don't want him to have withdrawals again (that was horrible...he screamed and screamed at us and at his favorite nurse).
Here's a pic of him working with his paci (he's starting to get the whole paci thing, we just need him to associate that with the bottle now):
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So far the changes made today seem to be good ones...he hasn't spit up after his last four feeds. We've figured out that once he's eaten we have to move him very carefully or just let him stay in his bed because he spits up (reflux).It's really hard when you keep thinking you are going to get to go home, and then you're told that you won't be going home nearly as soon as you thought, but we just want him to be totally healthy. We love him so much, and we've waited soooo long for him, and we just want him to be well.
Thank you, thank you, thank you for your prayers for him, baby Harper and all of the other NICU babies, their families, their nurses and their doctors!
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35 comments:
Jenny god is so good.. and all things work together for those that love the lord.. You give him all the praise and when the time is right Brayden will be given the all clear to go home..
Give all your praise reports as you are a testimony of gods awesome work.
Stephanie in mo.
I could not go to bed tonight until I read a report on baby Brayden. He looks so sweet in the pictures.. I am praying for endurance for you all.. God promised that to us.. What a special boy with such special parents.. Will check in tomorrow.. FAITHFULLY PRAYING FOR BRAYDEN,YOUR FAMILY, THE DOCTORS, NURSES AND EVERYONE THAT WORKS ON THESE SPECIAL BABIES...
Love,
Your Sister In Christ, Bryant AR
Sounds like overall he's doing pretty good and making good strides in improving! I absolutely love his picture..he's just adorable!
Keeping you all in our prayers!
Praying for your sweet baby boy and that he'll be ready to go home soon!
I don't want to sound like a commercial, and I don't want to give you more to think about right now than what you have to... so take this lightly.
Have you ever heard of the Ambi bed or my favorite the Kanoe? They are baby hammocks that allow you to have your baby sleep in a more upright position. It is supposed to help with reflux (among other things). My oldest had reflux until he began eating solids. It gradually got better after that. The meds he had for it were nasty and he threw them up, so we didn't use anything. But sleeping on an incline helped him.
Like I said, I don't mean to sounds like I am pushing a product on you. Just trying to point you to something that could maybe help.
http://www.kanoe.us/
http://www.babyhammocks.com/
And to get all of my product recommendations out of the way in one comment I'll just go ahead and recommend the Maya Wrap too. It's a baby sling, for you to wear your baby. My babies lived in that thing. :) A good friend of mine is a foster mom and her baby was on methadone for addictions his birth mother had. Anyway, while they worked on getting him weaned he liked being held extra tight in the sling.
Ok, thats all. I hope I didn't offend you. I know you have more to think about right now and I don't want to turn your comments section into a "I think you should do XYZ" You are Braydens Mama and you call the shots. I certainly don't want to tell you what to do with your baby.
hugs n' prayers
Valerie
Just a little helpful hint!!! Our youngest had reflux bad to the point he didn't spit it up but inhaled it back into his lungs and would aspirate. When you get home we learned the best thing for us because our baby was so tiny was after he ate and burped we put him in his carseat up right (even at night)many times for 1/2 hour or so and his food would settle much better then if we laid him down. Also, we learned that the reglan made him extremely grouchy. He had to have it but it did make him grouchy and our specialist at Riley Childrens in Indy had told us it would and he was right. I don't know if that will be of any help at all I just know after trying so many tricks that was what we found always helped Kegan. Best of Luck and you are in our prayers daily. You have touched our hearts and I check on you daily.
Hugs and Hearts
Wimsetts
Brayden looks so healthy and pretty now. His coloring looks so much better than in the earliest pictures. It shouldn't be long now before you can take your sweet baby home with you. Yea God! You remain in our prayers and thoughts.
We also had to put our last two little ones upright in their car seats after a feeding because of their reflux. They outgrew it, thankfully, but they seemed plenty comfortable in the car seats for the time they had to be in them.
I just had to check in on Brayden's day before I went to bed, too. The prayers continue for him and for all the babies who are struggling or working hard to heal so they can go home. Wishing you a good, restful night, and an easier time for Brayden each and every day and night.
It sounds like all in all it was a good day. Hopefully you can get the reflux figured out and what works best for him. He looks so precious in that picture. I am continuing to pray for little man and check on you all daily.
Dear Jenna, It has been 11 years since my triplets were in the NICU. I still remember those days with an absolute ache in my heart...they were some of the hardest days of my life. I am praying for you, for your husband and for this sweet boy. May the peace of God that is perfect beyond our understanding comfort you during these days! And may that sweet boy get well and go home very very soon! God bless you, Carol
I don't know you, but I sorta feel like I do now. I discovered Harper's blog and Brayden's over a week ago and I pray for them constantly! I have a 9 month old, so your story really touched my heart. I check on Brayden every day. Praise the Lord for hearing our prayers!
Was happy to see an update before going to bed. He's such a cute little guy. I know you guys are ready to be home as a family...I'm praying that day comes soon.
((HUGS))
He's beautiful as ever! I can't wait for the day to read that he's going home with you.
Our God is GREAT!!!! He is just precious... God will send yall home soon. Still praying
Each day is a day closer to taking precious Brayden home. Lifting each of you up in prayer and that you will have nurses with wonderful bedside manners!!!! It's amazing to see how the Lord is strengthening you and your husband!!!!
Brayden is beautiful! You are one blessed mommy! I just wanted to let you know I think you should do some research on REGLAN! Both my boys are reflux babies(better known as GERD babies)They wanted to put them on Reglan and normally I don't object too much to what a Dr. tells me, but something told me to research this specific med and when I did, I was HORRIFIED! The side effects are WORSE than the reflux and are permanant! My ped. dr. even told me he has seem some pretty nasty effects from it! Just wanted to give you a heads up! There are lots of better meds out there. Both mine did prescription prevacid twice a day and although they still spit up, you can tell they are feeling tons better
I just love Brayden's big dark eyes!! He is just too cute!! Just want you to know that I continue to keep you ALL in my prayers. Stay strong and hopefully soon you can bring that precious bundle home with you where he belongs.
The wait in the nicu is so hard. You have the right attitude. I have checked on you blog daily and praise God that Brayden has come so far in such a short time. He will be home soon. It is such a roller coaster...I know!!!
Jenna, I am praying for Brayden health, but for you to be able to relax and rest.
Brayden is so cute! Continuing prayers.
My son had severe reflux as a baby and it's very treatable with positioning and medication. Also, my son had the NG tube down his nose as well and once that was out, his reflux got much, much better. But Nick is 10 now (he has other health probs too) and he STILL occasionally will throw up due to flare-ups of his reflux. It's manageable...a pain, but manageable. Good luck. We've been praying for you (even though we don't know you). I somehow found your blog through Angie Smith's.
After every one of your posts about reflux, I want to leave a comment saying, "I know how you feel!" Our son (a premie, in the NICU for 6 weeks) has battled reflux for his whole life (8 months old now). He is finally growing out of it, but we've been through it all- Prevacid, Thick-It, careful positioning after feedings, aversion to bottles, etc. We found a few things that worked really well. If you ever need advice or support, please contact me. I found that dealing with a reflux baby is difficult at times, and it helps so much to have the support of others who KNOW how it is! Sorry if this is too forward. :) I am praying for you guys and for your beautiful little Brayden!
Jenna,
Brayden is so precious. I know it must be hard doing this day in day out, but you will get to go home soon and this will just a memory. Always in my thoughts and prayers.
Pam
Glad all of his tests came back clear. Praying you (and the nurses and docs.) continue to figure out how to best help him with his reflux and that he continues to get the hang of eating. Praying for rest and peace for you as you wait it out at te hospital a little longer. Can't wait for the day we see pictures of Brayden home in his sweet nursery.
Hugs and Prayers
Rachel in PA
Although I don't know you, I am praying for Brayden. I came across your blog today through a friend of mine. I am so happy that Brayden is getting better. We will continue to pray for your family & all the other NICU babies.
Y'all, Brayden is so beautiful. Still praying in NC. Stay strong!
Still praying about the feedings and the MRI of the brain.
AND praying for Brayden's Momma and Daddy!!!!
Hugs,
kendra
I am a speech therapist who has been following Brayden's story. When I work with infants with swallowing problems I use Simply Thick. It is a gel and goes down a lot smoother than Thick-It. It also has a better taste and texture. You might ask your doctor about this. We are praying for you guys!
I've been keeping up with Brayden and it really sounds like he's doing much better! My little boy was born at 32 weeks and he had some trouble taking to the bottle at first as well. He also had reflux- that is such a hard thing. We found that keeping him propped up after he eats (once we got him home) was helpful. We also kept his bassanet elevated too. They had done that in the NICU and said it helped, and it did for us. If you don't have one already- the Boppy Newborn Lounger was the best thing- it kept him propped up, but it didn't bounce him like his bouncer or swing. He lived in that thing until he outgrew it. It was a lifesaver!
Amy Horn
Rogers, AR
I just stumbled upon your blog and wanted to say that I will be praying for you, your husband and your beautiful little boy! God is awesome and has amazing plans. I know that He will continue to give you the strength you need. Congrats on being a new mommy!
tonight is my first time reading your blog. Brayden is precious and will be in my prayers along with you and your family.
p.s. i'm an arkansas girl!
tonight is my first time reading your blog. Brayden is precious and will be in my prayers along with you and your family.
That picture of him with his paci is adorable
Love the picture with the pacifier...he is precious!! Our God is an awesome God!
He looks SO cute! I will keep all of you in my prayers!
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