Not much happened today. He is still on the narcotic that they put him on for withdrawals and they should start weaning that tomorrow. They will also let him have another go at the bottle tomorrow. If he still shows signs of acid reflux they will start him on medication for that as well, and it would be something he will go home on.We could potentially be here another week - it all depends on when he decides he would like to eat from his bottle. They increased his feeds to 33ml's each time (he eats every 3 hours). He was in a much better mood today - much calmer than yesterday.
A lot of you have asked how we are doing - Chris and I are doing well. My parents have been here every single day and we have an adjoining room at the hotel. I don't think we'd be doing so well if they weren't here. My brother and I were both NICU babies and so they know what we are going through. Jeff (my brother) was in NICU for 3 weeks and so their advice and support has been invaluable. We've had many visitors and emails of support and that has made all the difference!
I think at this point it's hard because he seems so well now, and emotionally it's difficult to understand why I can't just take him home now. But I also understand that he needs to be here until he is 100% and I don't want him to leave until he is ready. He has made a truly miraculous recovery and we are so thankful for that. Several of the nurses have come up to us to tell us that they are shocked at how fast his PPHN went away. I guess it's pretty unheard of....but we know that this is just part of God using Brayden's testimony to reach others for Christ!
Thank you for praying for our precious man and all of the other NICU babies!
.JPG)
43 comments:
Jenna, I don't know you but have been praying daily!! That is wonderful news! My 14yr old was in the NICU and ended up on nutramigen formaula by enfamil for the reflux. As she got older we just have dealt with it through her diet! Prayers are still with you and your lil' man!
Wonderful news! I am so glad to hear he is doing so much better. You and your family will continue to be in my prayers!
I am faithfully praying..You blessed my heart.. Your post was a witness to me.. I know your family has been a HUGE witness to others at the hospital..God has been glorified! I don't know you but I know we are family in Christ. Praying faithfully for that sweet boy!
Your Sister In Christ
Yeah!!! It warms my heart to see little Brayden in your arms now. You look so beautiful and your family truly is picture perfect now. Continuing to lift your family and all the other NICU babies up in prayer!!!!
2 weeks already!! wow!! and he is doing so well - so are you!! Stay strong, praying always. X
I love how God is continuing to heal Brayden and provide for you and Chris! I am still praying!!!
What a great picture! And what great news that today was calmer for him. It's good that you are satisfied at not wanting to go home til he's 100%, You'll be a lot more confident then. I'm still praying for all of you and wishing him continued good progress that will have you home in no time. He's such an adorable little thing!
Susan
Lake Saint Louis, MO
Happy birthday Brayden! We are still praying here!
Jenna, we're still praying here in Virginia! Brayden will be home before you know it; I can only imagine how hard this has all been for you. You are so strong, and have an amazing faith. God is watching over you and taking care of that precious baby. Brayden's healing so quickly, and I'm hoping and praying things go much more smoothly tomorrow with the feeding!
Jenna- I am praying for you and for your family. Praying for little brayden! Also praying for the array of doctors and nurses who are caring for him. He is so lucky to have such caring parents! And crossing my fingers that it is just a matter of time before he is home with you!
In Him-
Kristen
So glad to hear Brayden is doing better. My neice was in the NICU two years ago because of RSV and she was also having withdrawls, its hard to see, but modern medicine is amazing. We will continue to pray for a full recovery.
Happy two weeks Brayden!
So glad that he had a better day today.
Still praying in NC.
Jenna - I have been reading your blog for a while now but wanted to leave a quick comment. My son was in the NICU for 69 days (he was born 11 wks early) and so I can understand how hard it can be to have a child there. Also, he has reflux and came home not only on Zantac, but he had to sleep on a wedge, it was so bad.
I guess I am saying all of this to let you know that there are others out here that know what you are going through and I have been praying for you and your family. It's great to see Brayden doing so well, but I am sure it can be scary! Hang in there!
Congratulations on the 2 week mark! You're right that this time can be very hard emotionally. I hope he is safe in your arms at home soon. And your family is beautiful!
Jenna, I love seeing little Brayden in clothes!!! I know it must be hard to see him doing so well and making so much progress that it's frustrating you can't bring him home. He's no longer critical, and is more of a "cruiser" just waiting for a few minor tweaks before he can be released. that's hard. not as hard as when he was critical, but still, this has been long and you are ready for it all to be over. You want to bring your precious boy home! i get it, I do. So glad he is doing better with the withdrawals. That must have been heartbreaking to watch. i remember when my daughter was 2 days old and they took her off the vent and she needed to go back on it. Watching her chest rise and fall as she struggled to breathe while they waited for the Neonatologist's approval to put her back on the vent was the hardest thing I have ever had to watch. Glad today was a better day. Hopefully they will get his lactose intolerance/reflux figured out and under control soon and he'll be an excellent eater so you can bring him home!!!
He's such a fighter and you and Chris have been SO strong! Praise God for the blessing of having parents who can be there right with you who know what you are going through.
Praise God for the testimony of Brayden and the power of prayer!
I have been following you'r blog as well as Kelly's and keeping both precious babies in my prayers! I have two sons who BOTH had really bad reflux, one thing I can tell you is it doesn get better with time! My oldest son has pretty much outgrown his! Brayden is beautiful! God is soo good!
So excited that he's doing so much better. You all make such a beautiful family! Still praying for you. ~ Lori
We are not shocked...we know NOTHING IS IMPOSSIBLE WITH GOD!!!!
We will pray tomorrow goes better for the feedings.
Hugs,
kendra
He is adorable!! I am so glad he is doing so much better. Still praying for him to get better and go home SOON!!!!
Praying...you are a precious family. I love the picture of the three of you. He will be home before you know it.
You guys make such a beautiful family! We'll keep praying!
I can not imagine how hard it is to have a house ready for a new baby, but not being able to take him there. You are over the top of the mountain. You are almost there. I will keep praying for all 3 of you!
I don't know you but I follow your blog. I have been praying for you and your sweet baby. I have twin daughters that are 7.5 months old and they were in the NICU for 6 weeks. It is a rough road, but it only makes you heart and love that much bigger. Both of my girls had reflux and left the NICU on meds. We are actually still on Zantac. The NICU put them both on Reglan, and fair warning, Reglan can cause babies to be very irritable. One of my daughters cried all the time and when they switched her from Reglan to Zantac a few days later she was so much more pleasant. They also had to put one of my daughters on Enfamil Nutramigen formula after I quit breastfeeding and, one on Enfamil Prosobee (soy). That also greatly helped their reflux. Hang in there, and have lots of burp cloths ready!
Jenna, you don't know me, but I've been praying for your family. I saw in your blog that you have a friend who is also in the NICU. What are the odds of that happening??? Are you both in the same hospital and NICU? Do you see each other and each others babies? I found her blog too? This seems so strange to me that too close friends would end up in the same position like this. Are the babies conditions similar? I know you have a ton of other things to blog about, but the odds of this are blowing me away and I am interested in more details. I do hope that you girls have been able to lean on each other. Are you also both from the same church? If ever you get the chance, please share about this. God does work in mysterious ways. I'm just so thankful that both your babies are doing so well!
Continuing to pray until you get to take that sweet baby boy home!
((HUGS))
Great news - I am praying for him and the reflux is soo common, both my boys had it. Hoping he continues to get better so you can take that sweet little guy home!
YEAH!!! I know your parent's support is such a blessing. Continuing to pray!
I am new to your Blog and I wanted to let you no that you and your family are in our prayers.Keep your head up high and stay strong! I will also be praying for all the other NICU Babies my daughter was a NICU baby in 2000 she is 8 and healthy the nurses were so nice and helpful she was at UAMS in Little Rock and I thank God for the wonderful staff and we thank God for her each and every day! God Bless You and your family!
Happy 2 weeks little man! He is such a precious little boy. I am so glad he is doing so well!!
Glad to hear things are better. Believe me, when he is 12 years old and eating you out or house and home, you will laugh and say "and you are the one who would not eat when you were born?" Have a blessed day and I will be praying for ya'll!!!
Great news and I will be praying that the feeding goes well today. Praying for all of you.
Still praying for Brayden. His steady healing is remarkable.
Jenna, while I do not know you or your family, you are correct is saying that the Lord is using your baby for His own Glory. May the Lord continue to strength and encourage you during this time. I can't wait to read your post when you are finally home with him. God bless!!
I am glad to hear you guys are doing okay! You have a great family. My son was in ICU for a week after he was born, so I can only imagine what you are going through. Hope he can go home next week or earlier. I am still praying for you guys.
I have been praying for Brayden after finding your site on Kelly's site. Little did I know as I prayed for him & harper that one of our church members/friends would have to deliver her baby 28 wks gestation weighing only 1lb 14 oz. Please pray for them - http://www.prayingfortrey.blogspot.com
we know God is in control! He is faithful!
Jenna, I totally understand your frustration. Our PPHN infant cleared his so quickly and made such big strides, only to get stuck on eating too. It took about two weeks for him to get it. I tell you this not to worry you, but to let you know that as hard as it is, this is unfortunately normal. This was the hardest part for me when ours was in the NICU, he cleared so many hurdles of getting off of different meds, machines, good stats, and then we just waited. By the way, ours came home on acid reflux medicine, too. Still is on it. He will get it! God has healed him and is continuing to do so. Please know we are praying that he will learn to feed well and that he will deal with withdrawal well, and for strength for you and your husband to stand strong and wait for God's timing. Your family is beautiful!
Having been in your shoes, just wanted to let you know of some tips/info-hope they help!
Brayden may need the synagis injections to help him prevent RSV. Insurance hates to pay for these (VERY expensive, but so wonderful). I asked a national PH specialist at a children's hospital, and our little ones who clear the PPHN (go back to regular pressures) are not anymore likely to have PH in their lifetime. Any future children you might have are NOT more likely to have PPHN than any other newborn. Just little stuff you probably already know, but hopefully it brings you some relief.
Sister in Christ
How great to see him getting better! God is so wonderful. It will not be long before you will all be home as a family should be. My family will continue praying. God bless!
I'm so glad to hear that he's still doing better. YAY!
Continuing to pray that Brayden is 100% very soon! The three of you are a very beautiful family!
this is great news..go brayden go! drink drink drink! still praying for you lil man..bonny in TX
Such a sweet picture of y'all! I'm sure it is SO hard to suppress those feelings of wanting to take him home. That will be such an incredibly happy day (and it will probably mean more to you than some of us who've never experienced what you have)! We're still praying for your sweet, beautiful little boy!
Hi Jenna-
You don't me but I also wanted to let you know that I have been praying for you and your family....It sounds like you will have your little guy home really soon!!!
I am pregnant now after years of struggling with infertility and I can only imagine the amount of strength you have to get you through this. I hope its ok but I am putting a link of your blog to mine
God Bless!
Christy Shanaphy
Still praying for your precious baby. Can't wait to see what good news you have to share tomorrow. God Bless your Family!
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