This will be a shorter update...because not much happened today. Oh, and we accidentally left the camera in the car and I don't want Chris going out in the dark parking lot to hunt it down so I apologize for the lack of pictures!
Today they switched Brayden's formula to a prescription one that I can't spell or pronounce! So far, it doesn't seem to have made any difference. They also added another med for his reflux. We got to bathe him again today which he absolutely hated!
A lot of you had asked about the NICU baby that been abandoned when its mom found out she had downs syndrome. From what I heard a nurse that works at ACH is trying to adopt her! Yay!
I really appreciate all the comments and tips you all have been leaving us! We are willing to try anything to help him! We just want to take him home so badly. I think God is teaching me a lesson on patience...since I really don't have any to begin with. I am learning!
Thank you all again for your prayers!
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28 comments:
I know I have said this before.. I am praying FAITHFULLY for your precious baby boy! Bless your sweet family.. I'll be checking in for a good report tomorrow!
Love,
Your Sister In Christ Bryant, AR
I am praying for you, your family and that sweet baby boy! He has come so far and it is only a matter of time before ya'll will be going home! God Bless!
Amanda
I have only had time to 'drive by' and read each night. Know I have been praying for your baby. As far as the reflux..make sure he's upright after each feed and when he's sleeping so he can't aspirate. I know Reglan is used for motility, but I have never heard it used for reflux and I am a nurse. Most babies I have treated were treated with Zantac (rantinidine is the generic) or Prevacid. I hope they try one of those because they usually work. Our God is good, isn't He? You are wonderful parents and Brayden is such a fighter. Hang in there!
I hope they find something soon that allows little Brayden to eat and not have the reflux issues. It seems that there is always something doesn't it!
This could be a test in patience that I am sure you will pass with flying colors.
We are still praying for you and Brayden!
Hi, I live in Ga and have been praying for your baby and baby Harper as well. My 5 yr old was born with malrotation of the bowel(his intestines were twisted) and he had to have surgery at 4 days old. We only spent 11 days in the NICU but I know your pain. It was our first baby and we tried for 2 yrs. to get pregnant so that was really hard to watch him go through. Prayers are the best aren't they. That's the only way any of us made it through that. Anyway our son also came home with terrible reflux and was on reglan and prilosec. They did help some but he took them til he was 9 mos before he really could stop taking them. We had to keep him upright after every feeding for about an hour. If we didn't, he would throw up terrible. He basically lived in his bouncy seat. Poor thing. Well I just had to finally comment because so much of what I read really sounds like so much of our what our experience was like. I know it seems like everytime he gets better, something else happens. It really stinks but I know you know that God is taking care of him and eventually he will be home and be perfect. Not that he isn't already perfect but you know what I mean :) Well I will continue to keep you all in my prayers and good luck. Tiffany
Our little boy also had reflux and was intolerant to both milk and soy proteins. His pediatrician put him on a prescription formula called "Neocate" (www.neocate.com). It was a saving grace as he could not handle all the commercially available formulas. I don't know if that is what your little boy is on but if it is, give it a few days because it sure helped our little one...even though it was very expensive (we called it liquid gold), it was worth every penny! Our little boy was also on Reglan and Prevacid which helped a lot with his reflux. He did not stay on Reglan too long and it did make him a little more grouchy when he was. Thankfully, he out grew it shortly after solid foods began. Good luck with everything. We check your blog often and have been praying for your sweet family.
-The Vaughn Family, Fayetteville, AR
Sounds like you are going with the flow... most important is mama and baby... enjoy all of this time, as I am sure you are!
God Bless the three of you and thank you for sharing your journey!
Michelle
hey jenna, we actually go to church together but never met!! our sweet baby boy parker had SEVERE acid reflux when he was itty bitty, it was the longest 3 mths of my life, changing clothes 6times a day, switching formulas, took baby zantax for an eternity, but eventually, it stopped. we did have to prop his bassenette at an angle and keep him upright about 30 min after he ate to try and help. sorry for the rambling and im sure you have gotten tons of suggestions but i just wanted to say hi and that we have been praying for you guys. hopefully when you are back home, i would love to meet you!
We'll continue to keep you in our prayers. I hope Brayden's reflux gets better soon!
I'm so happy to hear that the baby with Down syndrome hopefully has a mommy. At least it makes my heart happy to know that there is a nurse there who is probably acting as her mommy, nonetheless. That just broke my heart to hear about her being abandoned!
So with the ultrasound and xrays and stuff, did they rule out duodenal anomalies? Your mention of what seems like bad reflux just has me wondering more about perhaps a webbing or something, but I'm assuming the testing they did would have caught it, but I guess I'm not sure. I guess it is worth asking the docs about.
Ugh ... praying you guys are home soon!
Hi Jenna...
We went through the same thing with out daughter, Kayelyn. She was in the NICU for nearly two months. The first 3 weeks were the critical weeks waiting and prayings he made it. And like Brayden she suddenly turned that corner and took off flying down the road to recovery. The next weeks were trying. Learning to Eat, weaning from pain meds, spitting up etc... It does teach you to be patient that's for sure. Its so hard because you know they are better and you want to take them home. Its feels at that point, like home is a better option where you are all comfortable and can spend the time you need to teach him to eat without spitting up... I HATED how the nurses rushed the bottles and counted each "wet" burp as a spit up and it added on days and days to our stay. But just like he turned that corner a week or so ago, he will do the same thing with eating. One day he will just get it and the spitting up with slow down and life will be good... Our doc told us they spit up more if they have been on a ventilator because the gag relfex is more stimulated due to the tubes being down the throat and it takes some time to get over that... It will all fall together over the neek week or so, I promise. For now keep praying for patience. :)
Still praying for your family. I hope you get through the reflex problem soon so he can go home..
I was wondering if they have tried your little one on Nutramigen. It is a very expensive formula but it might help his reflux. Also, I agree with Shari about asking to have him put on Zantac or Prevacid. Both of my girls have been on these two medicines and they seem to work great!
I don't have patience either sweetie! I have a 10 month old and every month there is something new to figure out. Between feedings, sleeping, development...ahh! So much to learn as new mommies. I am just so happy that your little guy is healthy. You will be going home very soon...I just know it :-)
Just wanted to say that I read the one comment about Reglan. My son had reflux and a severe heart condition and was on reglan and zantac for it. He was also on a special formula in the hospital called Portagen. After a month home though he was put on Nutramigen by Similac. Just throwing my experience out there to you. You never know what info may help your situation.
I read everyday and pray you will soon be taking your adorable little guy home!
Everything will work out. You will be out of there before you know it. Still praying in NC.
I have gone back and forth debating whether or not to leave a message but have decided to if you can use it great if not just ingnore it... I have a baby with severe reflux as well he was about2 weeks old when we did the upper GI to make sure it was refulx, have they done an upper GI on your son? my concern for your baby is that reglan comes with a lot of bad side effects, we have our son on prilosec and zantac...they have their possible side effects as well, but reglan really scared me.. I was just wondering if your sons reflux was so sever they really needed to use reglan first before trying something a little milder... I'm sure the docs are doing the best for your son I just wanted to mention it from on mama to another... As always we will continue to pray for you, our son was a NICU baby too, we know what a scary time it can be. God bless!
being a mother of a downs child, it breaks my heart hearing that a mother abandoned her child because of her being downs..SHE IS MISSING OUT! If she only Knew!
Just wanted your family to know we are still praying for little Brayden. We know you'll be home very soon! We check on Brayden's and Harper's condition everyday.
Blessings!
The Farrar/Axe/Mills Family
FBC-Bentonville
Jenna, I have been praying for you and your baby since I first heard your story from Angie. Maybe you've already talked about this, but have you tried breastmilk, even donated breastmilk? Sometimes babies with severe reflux will do better with breastmilk instead of formula as the proteins are easier for immature digestive systems to break down. Reflux can be so frustrating and heartbreaking, especially for mommy! Praying that everything will improve and you will get to take your healthy baby home very soon!
Jenna,
I came across Brayden and Harper's story from several blogs and have been praying for all of you. Those two little troopers have already done amazing things! I live in NWA and am a pharmacist at WCWH so if I can answer any medication related questions please let me know
amoncrief90@hotmail.com
Thanks for the updates and keep being strong for little Brayden.
Alison
my niece had severe reflux as a baby!...just a suggestion here....have they tried "acidophilus milk"?!
This is what they treated her with...and it worked!
Just a suggestion...google it...you will read about how it is used to treat digestive problems...and it works wonders!
I'm continuing to pray for Brayden and your family!
Sheryl
Still sending up many prayers for Brayden and for God's strength for your entire family. Hold onto each other and you shall see even more better days to come.
O'Lord, our Lord how majestic is your name in all the Earth!
You have set your glory above the Heavens.
From the lips of children and infants you have ordained praise because of your enemies, to silence the foe and the avenger!!
I love this verse because children are the most precious gift God allows us to receive. I believe Satan right now is seeing the glory of God through the strength of little Brayden. It is a true miracle to see what a tiny, little, innocent child can go through and still hold on strong. God has so many great things in store for his life and I am sure that Brayden knows that! He is a true fighter.
God bless you all.
I wanted to let you know that I found your blog from Adrienne Fleming's blog. My daughter was a NICU baby and I wanted to let you that I am praying for you and your family. It is so intense to have a sick child. Just try to take it all in and keep up your strength. You will need it in the days to come.
Rachel
Praying!!
Praying for you Jenna! I remember trying to adjust to all the feeding issues with our first son, and he wasn't in the NICU! I am praying for strength, comfort and peace as you work through all this! Brayden is just precious! Praying in NW Oklahoma!
Kara
We know that you are very busy with your precious baby, but hoping that everything is going wonderful. Haven't heard from you in a few days. Praying that there hasn't been any set backs. You and your family are always in our prayers. Lydia in Oregon
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