Monday, January 26, 2009

A little setback...

Setback might not be the right word...but I can't think of another way to describe it at the moment. Brayden was having withdrawals (he would shake pretty badly) since he's been on pain meds since he was about a day old. He totally came off all meds yesterday but today they had to give him a very small dose of medication that helps with withdrawals because he was so upset.

When Chris and I went back to see him this morning he screamed and screamed. Everything was upsetting him...us touching him, moving him, the beeps and buzzes of the machines, the flash on the camera (opps).

He also still has the IV in his head which I can't stand. It looks so painful and he is no longer on pain meds so it has to bug him...

He had clothes on for the first time today! I think he was mad that he couldn't get his hands out to pull at his tubes:
Shortly after the above picture was taken, he spit up all over his outfit, so I got to change him for the very first time. Thankfully, Sayward was there to help! I think it will get easier when he doesn't have all the wires and tubes coming off of him:
Last night, they moved Brayden into a big boy crib! They also moved him out of Pod 3 and into Pod 7, which is great. Pod 3 is for critically ill babies and Pod 7 is for babies that are getting ready to go home:
He is still struggling with spitting up. My mom and I really think he is lactose intolerant (I was as a baby) and that they need to change his formula. He may also be dealing with acid reflux. They didn't let him have a bottle at all today and I don't know if they will tomorrow so we may end up being here longer than we thought. He also didn't get an increase in the amount of formula he is getting today.
He is doing his best to get well and I just feel so bad for him (especially this morning when he was so upset!). I know eventually he will get it (bottle feeding) and everything will be okay, but I just hate watching him struggle.
The weather here is starting to get really bad. We slid going back to the hotel tonight. Several cars had done 180's on the freeway. I hope that we are able to leave early for the hospital (like normal) but we may not be able to if the roads are still very icy.
I wanted to thank all of you that have emailed Brayden. The nurses handed me another bundle of emails today and each night Chris and I read them and put them in his book. Thank you!!
We've received so many kind notes from blog readers who live in the vicinity, work at the hospital or have a relative at the hospital. We wish we had time to meet up with you all and we are so thankful that you would ask to, but we spend 99% of our time back in the NICU as I'm sure you can understand! Thank you so much for your kind offers! We really wish we could meet every single one of you!
Thank you all so much for your continued prayers for all of the NICU babies, parents, nurses and doctors!

60 comments:

Lea Ann said...

Hi, I found you through Kelly's blog. I have been following Braden's story but have never commented. Know that I am praying for your little one here in Tennessee. I can't believe we are getting to witness the true work of God through your little ones. What a blessing!
Hang in there, he is adorable.
Lea Ann in Tennessee

Lea Ann said...

I'm so sorry! I didn't mean to spell his name wrong! I noticed it as soon as I posted the comment.

AKK said...

Jenna, we went through this 25 years ago with our son, who is now a handsome, healthy, wonderful man. Please know that there are ups and downs and trust your mother's intuition. Brayden is a beautiful boy and I know he will be so much more comfortable when he can go you with you. We will continue to pray for y'all!

Anonymous said...

Praying for your sweet boy.. and for an extra amount of God's mercy for you both. How wonderful that they are new every morning...
Love,
Your Sister In Christ

Yarnmomma said...

"All things work together for those who love the lord"

We will continue with our prayers and the lord will bless you with strength and faith...

Kristi said...

I'm continuing to pray for Brayden! It must be so hard with the little setbacks when you just want him to come home. How far he has come though, with God's healing hands over him. You've been so blessed, and it has been amazing to see!

Alexis said...

I found your blog through Harper's. I'm praying for your sweet Brayden. He's such a cutie. I especially love the picture of him in the little brown outfit with his head peeking out - adorable!

Kara said...

Continuing to pray for you as you deal with the rollercoaster of emotions! Stay safe during this ice storm! Praying for Brayden in OK!

Kara

Pam said...

Jenna, Sorry to hear about the setback but I am sure it is just that and Brayden will be back stronger tomorrow. Stay strong!
Be safe on those icy roads and sidewalks!
Praying for you
Pam

Gotz Family said...

Jenna,

I know how discouraging the "little setbacks" can be 19 months ago I sat at UCSF when my youngest Caden was born with Pulmonary Hypertension and was fighting for his life like your little guy has done. Caden is doing great now.

We pray for God's healing on Braden every day.

Adrienne said...

Still praying! Tomorrow is a new day and I'm sure he will make more improvements in leaps and bounds like he already has. He's already proved to be such a fighter by the grace of God!

Katy S said...

I hope Brayden has a peaceful night and day tommorrow. I will pray for an easy adjustment as they take him off the medications. He looks so precious! Be careful tommorrow. The roads are suppose to be really bad up through wednesday

Joëlle said...

I pray that God will give you the strenght to support those adjusments (you, Brayden, and You his parents). Came on your blog trough Kelly's Korner.
take care!
Joëlle from FRANCE

JanMarie said...

Stay encouraged:) It's neat to see how God is working in Braydens young life. What a handsome little guy! Here in Sicily we are keeping you all in our hearts and prayers.
Jeremiah 29:11 & Joshua 1:9

creative gal said...

I am praying for you! I know a head IV looks horrible; however, they tolerate it better than you would think. . . I know the setbacks are hard, but keep trusting and knowing that God will continue to meet all your needs! His timing is not our own.

Patsy said...

Wishes sent your way for a better day today. He will have these days and then it will all be ok. He is so cute!! Ya'll hang in there. I pray that Brayden will have a blessed day with lots of good things happening!!

Serious Shopaholic said...

He is so handsome--imagine the girlfriends who will be knocking at your door in a few years! I can't imagine what you are going through--just know that there are tons of us out here still uplifting you & your family to the Lord. Despite some setbacks, Pod 7 is a great accomplishment! I pray that he continues to get stronger every day & can't wait to see posts saying that you are taking him home!

Anonymous said...

Jenna,
Oh my Gracious, how amazing!!!
Yay, y'all will be getting to go home soon!!! Hang in there, you are almost to the finish line.
Blessings from Romania and LOTS of itty bitty prayers for Brayden,
The Bliznik Family

The Allens said...

Oh I am sure that is difficult to wtch, but it doesn't sound like he's having set backs - he's still improving, he just had a rough day (as we all do from time to time). I believe today will be much better. Prayers are still going up.

Mary said...

Jenna & family-
I have never posted on your blog before, so first and foremost congrats on your baby boy! I am a level 3+ NICU nurse in the midwest and thought I might point out that spitting up can be another big sign of withdrawl, with all his other symptoms it sounds like maybe that could be at least a small (and maybe big!) part of Brayden's spitting up problem. Hopefully it won't last much longer and you can get him HOME!

Mary said...

*withdrawal (sp)!

The Adkins Family said...

Poor little man! We're thinking of you guys...

Anonymous said...

...I will continue to lift you guys up in prayer. Look how far he's come since he's been born!

-praying for you in Indiana

Maggie said...

I've been reading your blog since finding it through Kelly's which I found out about through Bring the Rain. I have been praying for Brayden through all of this and continue to believe God is holding him in his hand. His progress will continue. You and this little boy are tremendous witnesses to the rest of us about your unwavering faith. I pray he continues to improve and you can take him home soon. God bless you and your family. Praying from the Northwest!

Anonymous said...

Praying for your safe travel to the hospital this morning... and for good news throughout the day!
Love and prayers,
Your Sister In Christ

Brycen said...

I am sorry for the small setback but I am glad you got to move from pod 3 to pod 7. When we were there it was much less tense once we moved pods. I hope he starts taking food soon. We will still be praying for you and your baby.
Christy, Brad, and Brycen

Al's World said...

My daughter has acid reflux very badly. I would nurse him, but wasn't making enough milk so I also supplemented. I changed to Simialac Sensitive, it's in the Orange container, which still has some milk in it, but is lactose is very little. When she would nurse off of me, she spit up all over the place, when she had her formula, nothing. My doctor also gave me medicine to help her with that, and she got better. Hope this helps, I am so glad he is doing better...he is such a trooper!!!

AJU5's Mom said...

Praying for you and Brayden!
My little girl spent 1 week in NICU because of an infection during delivery. Although the head IV is scary looking, it is actually the best spot for it (she had hers there the last 5 days) because of the strength of the vein. And you are right - it is a lot easier to change them when they don't have wires attached!

Pierce Productions said...

Hey Jenna, Chris, & Brayden,

Sounds like he is moving right along. A small step backward is just that...small. Keep things in perspective b/c Brayden is doing fantastic. I was so excited to see he was wearing clothes & he's got a crib. Hooray!!! That means he is definitely improving greatly. I remember when we came in & saw Morgan wearing clothes & I was like hey, she's got clothes on. :D And he's now in a different Pod.. Yeah God!! And yeah Brayden. FANTASTIC As for the reflux, will they be giving him some meds to help out with that. Perhaps his throat was burning due to the spitting up. I see his head is elevated so that should help. One thing that worked great for me once I got Morgan home was to carry her around in a Baby Bjorn after she was fed (I actually carried her in it ALL the time) but especially after she was fed so she would be upright & close to me. Sure did help her. I found that she would sometimes still spit up a little so tucking a cloth diaper in the front of my shirt spared me multiple shirt changes.

Still praying for you guys. Hope the weather wasn't too terrible for you to get to the NICU early. Blessings!

Angie said...

I found you through Carter's blog I think and have been praying very hard for Brayden! He is fighting so hard right now-let's call it a bump in the road, not a setback. Hang in there, he will get through this like a champ!!!

Angie in Kansas

Heather said...

I'm sorry things aren't going well today :( It's hard when we have expectations that aren't met. I remember having to beg and plead with the NICU doc to let me even try and breastfeed my baby. Some days he would let me and some days he wouldn't. It would break my heart when he'd say no :( I would be so upset and cry but I know I should have just been grateful that my baby was doing so well. I'm praying that everything will work out soon so sweet baby Brayden can go home where he belongs! I pray for you guys at least a dozen times a day! Hang in there! Hugs and prayers,
Heather~ On the Homefront

Hailey said...

Brayden is beautiful! I know I tell you on every comment but he truly is a beautiful baby.
YAY for moving to a different Pod. He will be home before you know it.
Still praying in NC

Tracy said...

My son was a micro preemie and spent 10 weeks in the hospital after he was born. I have been praying for you and Brayden. :)
I have some tips in case they help.
If he is no longer receiving IV meds, ask for the IV to be taken off (I think they have to be without IV meds for 24 hours) or ask if they can try oral and if that works, remove the IV. If they can't remove the IV yet, see if he can wear a hat with a hole cut out for the IV to help stablize it and it also helps it not look so scary, kwim?
And congratulations on clothes! That means he is definitely closer to discharge!
You can use his diaper to help stabilize all the wires. Just gather them and use the diaper tape to tape them to the center or off to the side a bit. That makes it so much easier to move him around!
I know this part toward the end is difficult b/c it's like your heart is full of hope for his homecoming, then deflated, then oh wait, maybe he will be home soon. Just hang in there. You are closer to the end of his stay than you were when you first came in the NICU!!

Andrea said...

Praying you would continue to know God's peace through these setbacks. I don't know what it's like to have a child in the hospital, but I do have three small kids and know that when you have a gut feeling on something, to go with it...if you feel like Brayden is lactose intolerant, I pray God would give you the strength and words of wisdom to encourage his doctors and nurses to switch the formula. Our Creator has equipped and chosen you as Brayden's mother because He knew you were the perfect one for the job. :)

Love in Christ,
Andrea

pinkmommy said...

I am praying that today will be an unbelievably good day for the three of you!

Lynnette Kraft said...

Jenna,
When our baby daughter had open heart surgery twice in 2 weeks, she got very agitated and grumpy and sick when she was being weaned off of the narcotic drugs. It's normal for babies to have withdraw symptoms so hang in there. She got over it pretty quickly - and it was a gradual improvement. It IS sad to see babies go through it though and I'm so sorry you have to see little Brayden have those symptoms. :(

My heart (and prayers) go out to you all.

Love,
Lynnette

Emily said...

He is adorable! He looks so sweet with those bright eyes. And it sounds like he is quite the fighter!

I don't have any kids (yet) but as a pedi nurse, I know that its always better (albeit frustrating) when they are fighting mad...it means they have energy!! Its when they don't cry and fight that is worrisome!! And the good part of the IV in the scalp is that he can't pull it out (and if he does...holy cow!) which means no more pokes! Will they let you put a little stocking hat over it? Maybe just while you are holding him?

Ya'll are doing an awesome job...still praying for your family in Dallas-
Emily

Amy and Jerry said...

Hi,
I have a baby who is also named Braedan who also spent his first days in NICU 16 months ago. I've been following your Brayden's story and was moved to write you a note when you said you thought he was lactose intolerant. I wanted to pass on something I learned during our NICU days - that is that I am Braedan's mama and I can read and understand him better than anyone else. You are the perfect parents for Brayden and you know, connect and understand in a way that no one else can. The NICU nurses and Docs are great and wonderful, but they aren't tuned into the baby like a mama and daddy are. I learned that it was important to trust our instincts. So I guess I'm saying that if you feel he's lactose intolerant, make sure the docs listen to you and try a different formula. We're sending so much love to your family.

Anonymous said...

I found your blog from another one. We have been praying for Brayden and all of you. My son (who is now 12) was lactose intolerant at birth as well. My kids are adopted and his birthmom and birth father were both lactose intolerant. The hospital still just gave him the regular formula which upset his stomach greatly. Once we got him home his doctor switched him to soy which come to find out he was allergic to that as well. We went to a gastro doctor and she put him on Nutramagen (sp?) which worked wonders...he had absolutely NO stomach issues after that. Has a gastro doctor seen Brayden yet?

May the Lord bless you and keep you!

Emily said...

Jenna.... God is truly great! Everyday he continues to get better! what an amazing lil fighter you have:) Continuing to keep him and you in our prayers! hugs!!

Carrie said...

I remember that feeling when Hannah was six days old and they had the IV in her head for her platelet and IVIg infusions. I HATED it, and I only took one picture with her during the whole time when she had it.

I'm still keeping your little man in my thoughts and prayers. {{Hugs}}

Erika said...

I found your blog through Kelly's blog and I just wanted to let you know that I'm really praying for you & your precious Brayden. I'm so happy he is doing better & I hope you are able to bring your sweet boy home very soon!

The Williams' said...

I live in the Little Rock area, and I just wanted to let you know that you are in really good hands at ACH! I read your blog every day to check on Brayden and my husband is pretty addicted as well. With a baby on the way I think your story brings things to life for us. We will continue to keep you and your family in our prayers!

The Allens said...

I am hoping you made it to the hospital early today. I know there is quite a bit of bad weather up there. We are supposed to get it tonight.

Katie said...

Hey Jenna...Kaleb had really bad acid reflux and would scream every time after he ate. When he was 3 weeks old, I asked the pediatrican to give him a medication for it because it was making feeding miserable. After about a week, he was doing 100% better. I know your situation is different...but just wanted to share.

Jamie said...

I'm praying really hard for little Brady. He is such a good-looking little boy! Baby steps are good...I am sure he will be home soon.

Cori said...

Poor little man! I'm sure the tubes & everything are hard to handle.

Continued prayers...

CAMoore said...

How are YOU doing? I can't remember if I have asked that, or if you have answered it yet. Hope you are getting some rest!

Still praying over here in the River Valley..

He is presh!

CAMoore said...

How are YOU doing? I can't remember if I have asked that, or if you have answered it yet. Hope you are getting some rest!

Still praying over here in the River Valley..

He is presh!

Megan L Hutchings said...

I am so sorry that sweet Brayden had a rough morning. Bless his heart!!! I hope that as the day goes on he improves.

YAY for Pod 7 and for changing his little clothes. You truly look like a natural :)!

Anonymous said...

Your family has been on my heart all day.. I am praying for a great update! Stay strong.. You are such a witness!
Love,
Your Sister In Christ

Sarah said...

I'm still praying for Brayden! He is sooo cute!!I am so glad that you're able to hold and snuggle him! :) I hope you're both able to get enough rest so that you stay strong for him!

Andrea @ Mommy Snacks.net said...

Well, yeah for some progress!!! You have been in my prayers since I became aware a few weeks ago.

Don't ya just love the IV in the head. Our son had several medical procedures when he was younger and b/c he was so little, they put his in his head too. At least it doesn't bother them in that part.

I'll continue prayers for your family and precious little man!!

Katy said...

Be patient and have faith. Things will settle out eventually!!

Continued prayers from the midwest!

~Kate

Barb said...

The photos today are adorable I see a wonderful little mommy and a strong little boy that you will be chasing around the house very soon.Your cute little man is going is going to keep you on your toes,your family is in my prayer everyday take care and stay safe....Barb

Crystal said...

Hello! I found you thorugh Kelly's Korner. I've been checking on Brayden everyday and praying for him. I'm so glad to read that he is getting better everyday. I haven't posted a comment before b/c I'm new to this whole blogging thing but I'm learning. You guys are in my prayers!

Sayward Staggs said...

Jenna and Chris.
Thank you so much for the beautiful gift. You really shouldn't have. You are very blessed to have such a wonderful and supportive family. I love little Brayden and we'll have him eating in no time.

Shelley said...

What a sweetie! Poor guy. My daughter was in the NICU for a brief time and she also had the IV in her head. I hated it too. It broke my heart to see that thing stuck in her head. Someone taped it so horribly that even other NICU staff members wondered what they heck they were thinking. Anyway, I haven't posted before but I have been keeping up with your story and I'm so glad he is improving even if there are little bumps in the road. You can be sure I will continue to follow his progress and you are all in my thoughts!

RZ said...

I remember being in the hospital with my little one when she was 3 weeks old, and how hard it was to watch her go through all that stuff. I'm so glad you have support and your faith--your little one will be home soon!!

praying in Pittsburgh

JKL said...

Ok, a couple of things:
1) No, it's not easy having your child in the NICU, but you have to look at the bright side, your child is bigger than most which means it could be worse
2) if he indeed is lactose intolerant, which the med. staff would know, then perhaps you should consider breastfeeding
When my son was in NICU I wanted to do all that I could to make him better, and breast milk helps so much. While it was stressful balancing pumping, visits, breastfeeding, I had to remember that I was his momma and I was doing the best for him by making his milk.
3) yes withdrawls are awful, but they are going to eventually withdraw from something - whether it be the initial pain meds or the methadone.
4) trust the staff of the NICU. They do this for a living, day in and day out.
5) you say you spend 99% of your time in the NICU. I encourage you to take some time for yourself so that you can give him the best YOU than you can. Only taking 1% of time for yourself isn't enough
Hope this helps

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