Thursday, February 26, 2009

Answers and a Award

I've had a lot of comments to my last couple of posts and I want to take a moment to answer some of them (this might get cut short depending on Brayden!).

Miracle Blanket - First, thanks to all of you who offered to send me one! Thats very sweet of you. I just checked out their site and I found that the blanket I have that velcros is almost identical to the Miracle Blanket. It goes on the exact same way, the only difference is that it velcros so the loose end doesn't just hang there.

Crying It Out - I just want to clarify that I'm not a fan of this. I am however doing what my doctor recommended and letting him fuss for 5-10 min's before picking him up in order to avoid a pattern of behavior that could continue on into toddlerhood. I think what I wrote could have been misconstrude to read that I let him cry and cry and I just want to clarify that I don't!

Going Out - After Brayden's doctor appointment we learned that it is okay to start taking Brayden out but there are certain places he isn't allowed to go yet, because my doctor doesn't want anyone touching him. So yes, it's okay that we went out! I definitly wouldn't take him out if my doctor would have said not to. Right now we do not have the green light to go to church but once we do we will be there!

Last night actually was an improvement. He slept a little better in his pack and play. I slept on the couch and just got up to feed him, change him, burp him and comfort him when he got too upset.

Adrienne gave me a blog award! Thanks so much Adrienne!!!

The Lemonade Award:
Bloggers who show great attitude and gratitude. What you have to do...upon receiving The Lemonade Award, you pass it on to other bloggers who you think show great attitude and gratitude.

The rules:
1. Put the logo on your blog.
2. Nominate 8 other blogs which show great attitude and or gratititude.
3. Link to the nominees.
4. Let them know by leaving them a comment.
5. Share the love and link to this post and to the person from whom you received your reward.

I nominate:
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Wednesday, February 25, 2009

Big Night Out

Tonight we decided we were going to go out to dinner. I just HAD to get out of this house!

I told Brayden we were going to be leaving and he looked at me like "No! Not another doctor appointment!" Poor thing, that is probably all he thinks there is to life.

In his carseat...contemplating whether or not to scream at us...
At dinner...
He actually did really well. We went to Abuelo's, my favorite place (you know it's bad when all of the waiters ask where you've been for the last 6 weeks...) and he slept for awhile and then decided that he wanted to be held. Chris cut up my food and I held him and ate. It worked out pretty well. I was very apprehensive about going so I am glad it turned out okay.
Last night Chris stayed up with Brayden. I don't think I could have done one more night in a row of staying up all day and night. I slept like a log. I never heard a thing. Chris had to wake me up and I don't even remember that!
I got a lot of great suggestions from a lot of bloggers on our sleep situation so I thought I'd let you know what we've tried thus far.
-Swaddling with a blanket
-Swaddling with this sleep sack thing that velcros around him
-Sleeping on several inclines (he can't lie flat because of his reflux)
-Sleeping with noise and light
-Holding him on the couch (usually the only way I can get him to sleep)
-Co-sleeping (he really hates it)
-Rocking him
I know there's more but that's all I can think of at the moment.
(Edited to add...I forgot to mention that he hates the bouncy seat, the carseat and both swings (he has a regular swing and the side to side swing that graco makes for colicy babies).
Oh and off topic but several of you asked where I got his bedding - we got it at Babies R Us (it's by Amy Coe).
My mom was over again today (yay!!!) and I was able to leave for about an hour and run some errands. Wow, that did me so much good. Seriously, that little break really recharged me. I'm soooo thankful that she lives here and doesn't mind helping out so much!
A quick update on baby B - he is off his vent, off ECMO and his mommy finally got to hold him! Thank you for praying for them!
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Monday, February 23, 2009

1st Pedi Visit

Today was Brayden's first pediatrician visit. We were very anxious to see how he was doing. I was also anxious to see if what we are going through with our sleeping issues are normal (mainly he screams ALL NIGHT LONG).

Getting ready to go get weighed in...


Snuggling with Daddy...
Weigh in time...

Getting dressed again...
Brayden did really well - he had gained 12 ounces since last Monday! That's double what we expected. He now weighs 8lb 8oz. The doctor thinks some of his tummy issues are because we are giving him too much food (and his food is richer because he is getting 24 calories per ounce as compared to the normal 20). He told us not to try to get him to take more than he wants which is a relief because meal time around here is dreaded by Mommy and Daddy.
As far as sleep goes, he thinks that Brayden is still adjusting from having been in the NICU for 5 weeks. I haven't slept since...last week I guess. My mom stayed over last night to help (I can never repay her!)
I'm just praying that soon Brayden will start sleeping in his crib. Every time I put him in it...or his swings or his bouncy seat he just screams until I pick him up and he is too young to cry it out. So I've been sleeping on the couch with Brayden on my chest (sleeping is a way overstatement...more like I've been sitting on the couch while he sleeps). I just keep telling myself that this has to get better!
Thanks for continuing to pray for our little man!
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Thursday, February 19, 2009

The last 2 days

I don't mean to be a bad poster - but the last two days have been really hectic. I went to the doctor and have a really bad sinus infection. He put me on a super antibiotic that will kill anything I've got but I've felt super lousy the last few days. Thankfully my mom has come over to help Chris and I out.

Yesterday mom took Brayden to see his room:



And Daddy figured out that Brayden LOVES his chest carrier:
And today Brayden had a bath...you can see how much he enjoyed that:

Getting dry:

All snuggled up in his swing:
We are still attempting to convince Brayden that this is actually his home. He is so used to the NICU and all the noises from it that it's been a fairly hard adjustment. The first night was really hard, the second night was better but then last night was brutal. Thankfully mom came over early to watch him why we caught a little sleep. It's really hard to adjust a baby that has been in the NICU for so long. Today he seemed a little more content with his surroundings (thankfully).
Hopefully now that I'm feeling better I will be a better updater!

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Monday, February 16, 2009

Home At Last!

After 33 days in the ACH NICU (+1 day at Willow Creek's NICU) we are HOME!

All dressed up and ready to go...

Saying goodbye to his girlfriend...I mean, his favorite nurse!

Loaded up...

Byebye ACH! Thank you for everything!

We got home around 3:45pm. Brayden is doing so well. I think he's happy to finally be home! We weren't sure this morning if we were going to get discharged because we had a new doctor again today. Thankfully, she said he was well and that there was no reason to keep him! I think ACH broke a record when discharging us. We were out of there around noon....I've seen other parents leave as late as 9:30pm!
The last couple of hours have been spent attempting to organize the chaos that is left over from being gone for over a month. When we came home we had two big banners on our house welcoming Brayden home! I'll have to get the pics from my parents.
Well, I am already exhausted so I need to get off of here but THANK YOU sooooo much for praying for our family! We couldn't have gotten through this without your prayers!
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Sunday, February 15, 2009

One More Day...

And we should be headed home!

Brayden seems pretty happy with the idea!

We had a little setback yesterday (we think he accidentally got the wrong formula, and it made him pretty sick) but now we are back on track. However, I'm sick again and so I only spent half of yesterday at the hospital and I haven't been there at all today. Of course I want to be with him but not at the risk of getting him or any of the other babies sick. I'm feeling a little better but I will probably go to the doctor once we get home just to make sure I'm okay.

Brayden is still draining his bottles and doing very well. Yesterday they took his pulseox off so all he has on him now are his three chest wires that measure his heart rate and respiration.

I am going to attempt to be useful and pack up our hotel room...we've been here over a month so you can just imagine what it looks like. Scary. I hope we can fit all of our stuff in the car! Thank you for continuing to pray for Brayden and all of the other babies!

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Friday, February 13, 2009

Happy One Month Brayden!

Today was Brayden's one month birthday!


Something is missing from the above picture....any guesses? It's his feeding tube! Dr. May came by today and was so pleased with Brayden's progress that she cancelled his GI test, told us that the tube could come out and if he continues to eat this well then we will go home on MONDAY!

Here's a funny...when Brayden heard that his tube could come out he ripped it out himself - tube, tape and sticker (it held the tube to his cheek)! My mom calls him a little stinker and I think she's right!


(Above) Brayden loves his swing - I hope that he likes the one we have at home as much as he likes this one!
Thank you for continuing to pray for Brayden! he did so well today with his feeds. We are just praying that he keeps it up and we will be headed home soon!

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Thursday, February 12, 2009

A GREAT day!

Well the day started off not so great because the upper GI got bumped to tomorrow. After that disappointing news, I started to prepare Brayden's bottle. Our wonderfully fantastic occupational therapist (did you like that Tessa?!) came over and we were talking and Chris was feeding Brayden. Andddddddd....HE FINISHED HIS WHOLE BOTTLE! We were shocked. If they would have let me throw a party right then and there in the NICU I would have.

So that was at 9am. At 11:30 I made his next bottle and we fed him and....he finished that WHOLE bottle too! And again and 3pm, 6pm and 9pm! He finished his 6pm bottle in 8 minutes! We are shocked and so, so happy! We won't be there for his 12am and 3am bottles but our favorite night nurse Shannon will be there to take care of him (which really makes it easier for me to sleep!).

Also, Chris and I got interviewed on the radio today! It was so neat! ACH is doing a pledge-a-thon and we were asked to do an interview on our experience at ACH. I was so excited to be able to share not only about what the doctors, nurses and other staff have done for us and for Brayden, but also to share about Brayden's testimony and let others see the power of God. After we were off the air the vj's thanked us for using our time to share about God and his awesome love. It was so, so cool.

So, tomorrow the GI test should take place. Please continue to pray that Brayden will take his full bottles so that we can come home! And a quick update on Baby B - he is off ECMO and seems to be responding well! Praise God!
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Wednesday, February 11, 2009

Upper GI

I just want to give a quick update - tomorrow they will be doing an upper GI test on Brayden. Basically they will watch him eat under and xray and make sure there aren't any abnormalities with the way his insides are formed. I don't know the time of the test yet (it wont be scheduled until morning).

I just got back from the hospital where Brayden had a good feed but then threw it all back up. We are just so tired of seeing him hurting and we want him well. Please continue to pray for Brayden and his tests and eating struggles. Thank you all so much!
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Tuesday, February 10, 2009

Surgery?

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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Monday, February 9, 2009

Bottles.

This is going to be short because we are really, really tired, but I wanted you all to have an update!

I now think of life in 3 hour increments. That's because that is how often Brayden gets fed. This morning our NP decided to let us give Brayden more bottles so we got to feed him at 8am, 11am, 2pm, 5pm and 8pm. Our wonderful night nurse Shannon, will be giving him bottles at 11pm, 2am and 5am (we were going to stay all night to feed him until we heard that Shannon was going to be our nurse tonight - she is the best!).

We had another doctor rotation today and Dr. May is our doctor again (we love her!). She gave Brayden a little pep talk today and told him that he is well and now he needs to take his bottles so we can go home! I sure hope he listens better to her than he is to us!

Brayden did very well today with his feedings and so I am holding out hope that maybe we will get to go home this week. But I've been saying that for the last few weeks now, so who knows. Please continue to pray for Brayden, that he would understand what he needs to do.

And a quick update on Baby B...they were going to attempt to take him off of ECMO but were unable to today. His family could really use your prayers. I know they were discouraged by today's news.

Thank you all for your diligent prayers. We need and appreciate them!
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Saturday, February 7, 2009

Saturday Night

We haven't uploaded pics yet (we just got back and are super tired) so I'll keep tonight's update on the shorter side.

We fed him three times today (we don't go in for the 2am feed). The 8am feed didn't quite go well...he took 30ml's from me and then a new therapist came in and wanted to look at him and try to feed him and he just ended up really mad and refused to take anything from her. At 2pm, Chris fed him and he did good (47 ml's) and then tonight at 8pm Chris fed him again and he was just so tired. He only took 32.

Tomorrow I will find his doctor and see when we will talk about moving him to 8 bottles a day. I think it's just hard on a baby when they have such a strict schedule. When my mom took my brother home (he was a preemie) the doctor told her that he would eat when he was hungry - which he did and was totally healthy. So we shall see.

Thank you so much for continuing to pray for our family and the many other families that are still in the NICU. For those who were praying specifically for "Baby B" I wanted to let you know that he is doing well on ECMO and they were able to turn some of his ECMO settings down. That's such great news and his parents were so happy! Thank you again for your prayers!
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Friday, February 6, 2009

Test Results

Brayden had his swallow study done this morning. We found out that he was silently aspirating on the regular formula (without thick-it) and could aspirate on the nectar consistency formula so he was bumped up to honey consistency formula (it looks like elmers glue!). Thank you all for praying for him!! I was so proud, he didn't cry at all! He just stared at the radiology tech the entire time and let them put different bottles in his mouth. He didn't make a peep!

Annnnnnnnnd, he got bumped up to 4 bottles a day! We are halfway there! Once he can take 75% of each bottle I think they'll move him up to 8 bottles a day, and once he can take 75% of each of those for 24-48 hours we should get to come home (if I am understanding that correctly).

Daddy usually gives him his bottles, but tonight at 8pm I gave him his bottle and he took almost 75% (44ml's)! He did so good!

They had us bring in our carseat (they always inspect them before you can leave) and gave us a bunch of booklets on going home, so I am thinking that the end is finally in sight!
Since we have been down here so many of you have seen me out and about (usually at the hospital) and have come up to say hi! Thank you so much - that means so much to us! I know it can be hard to approach someone when you aren't sure if they are really who you think they are, but I am so glad you did!
Thank you all so much for your prayers, they are working!

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Thursday, February 5, 2009

Day 22 in the NICU

Brayden had a good day thanks to your prayers!


Today he took 43 ml's of his morning bottle (a new record) which is almost 75%! My parents are at the hospital now giving him his evening bottle (we had to come back to the hotel to do some laundry).

We really need your prayers - tomorrow at 9:30am Brayden will have his swallow study. I really think everything will be fine but I can't help but worry a little.

Here are two possibilities for tomorrow: They may have to thicken his formula more than they currently are or they may reduce the ml's of formula he gets, but up the caloric intake per ml's (so, if 1oz of formula has 20 calories, they might increase it to 24 calories per oz, therefore, he would have to take in less volume for the same amount of calories).

I really, really wanted to be home before Brayden turns 1 month old (next Tues) but it's not looking like that will happen. We know that God will let us take him home when He is ready, and whenever he so chooses to do that, we will be happy with His decision. His timing is always perfect.

Today I started to feel better, so I got to cuddle with my lil' man...


You can't see it in this pic, but I have a lovely surgical mask on so that I wasn't breathing on him. I held Brayden for a couple of hours and the entire time he slept. Then, I carefully handed him to Chris and BAM! he was awake.
Thank you all for your prayers for all of the NICU babies and I will update on Brayden's test results as soon as I can tomorrow!
(ETA: I should clarify, this is day 22 in the ACH NICU, day 23 if you count his day in the Willow Creek NICU)
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Wednesday, February 4, 2009

My first day without Brayden

Today I really felt sick and my cough was worse, so I've stayed at the hotel. That was such a hard decision to make but I had to do what was best for Brayden and all of the other babies.

Friday, Brayden will be having his swallow test. We get to go with him to radiology to have the test done (it takes about 30 mins I think). We would really appreciate your prayers that they can figure out why he isn't taking his bottle.

After that I don't really know what happens. If they don't find anything wrong, which they don't think they will, then I truly don't understand what they will do. We love all of the doctors here at ACH, yet sometimes it's hard because you constantly have a new doctor and their plans for Brayden can be different than the last doctors plan. I haven't seen Dr. Arrington in awhile, and I am curious to know what he would think, so I might look for him on Friday.

Thanks for continuing to pray for Brayden. We love reading your comments and it really encourages us to know people are still praying!
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Tuesday, February 3, 2009

3 Weeks Old!

Guess who's 3 weeks old?

Who me?!
Unfortunately I didn't get to spend much time with him today. I have a really bad sinus infection, and wore a mask when I went to see him, but I didn't want to be back there coughing, since it isn't good for any of the babies.
Mom, Dad and Chris took turns taking my place though!

Nothing really happened today. Tomorrow Brayden will be given Thick-It again (to thicken his formula). At some point this week they are going to do a swallow study to see if his formula is leaking into his airway, which they don't really think it is, but it's something they want to rule out. If needed, they are going to start him on the med that coats his throat to heal it from the reflux.

He is on 60ml's now which is full feed. So all we need is for him to take his feeds from the bottle then we can go home! It may be another week or so...

Thank you for diligently praying for babies "E" and "B." I am happy to report they have both made improvements today!
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Monday, February 2, 2009

Another Good Day

Brayden had another good day! The doctors weren't able to round until about 6:30pm tonight because of two very sick babies (please continue to pray for "E" and now also "B"). We learned that Brayden will now be able to get 60 ml's per feed which means NO MORE PICC LINE! Yay! The PICC line is the IV that is in his leg. It looks so painful. I am so glad that tomorrow it will be gone!

They are also going to add another med for Brayden's reflux. It should only be short-term because it's a med for his throat. Basically, they think his throat is raw and irritated from throwing up (which he's not really doing anymore) and that is why he doesn't want his bottle.

His hair looks red in this pic...it's not, it's actually a sandy blonde color.

Daddy and Brayden:

Another one of Daddy and Brayden:


I've just noticed that Daddy doesn't take enough pics of me with Brayden! We're going to have to work on that!


I accomplished something amazing today...I changed his diaper without him screaming! I had some help...my mom was back in the NICU with me (only 2 people can be back at a time) and she did her best to distract him while I changed him and took his temp. He did so well!


Tomorrow is his 3 week birthday, and his first day without methadone! Oh, and his first full day sans PICC line! YAY! I hope we will have him home before he's a month old, but if it's not God's timing then I don't want it. HIS timing is perfect, and that is all we can ask for!


Please continue to pray for E and B. B is new to the NICU and is on ECMO. They need our prayers! Also, Chris and I have sinus infections, and we will be picking up our RX's tomorrow. Please remember us as well - we need to be well for Brayden!
Edited to add:
Chris had a pic on his phone of me with Brayden...hope it isn't too fuzzy!
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Sunday, February 1, 2009

Drama King

This is Brayden's "your taking too many pictures of me with the flash on" face. Or, as Chris refers to it, the "No paparzzi please" face!


Brayden with Grammy and GrandDaddy:

Brayden attempting to be sneaky and pull out his NG tube:

Brayden had a good day today! Chris got to give him his bottle and he took the largest amount yet - 30ml's! After that feeding they upped his amount to 52ml's! He had ZERO residuals and NO SPIT UP'S!!! Yay! Now we just need to get him to his full feed amount (they will then pull out the PICC line) and get him to take all of his feeds through the bottle and we can go home! He had a few temper tantrums today but as the nurse said, "Congrats...you now have a normal baby!"
Several of you asked what formula they have put him on - it's called Neocate. And his other reflux med is Prevacid...I can remember it now because I think "prevent acid."
Thank you all so much for your prayers for Brayden and all of the other NICU babies! The baby that is now in Brayden's old bed is not doing well. He was started on ECMO (what Brayden was going to have) and his brain began to bleed so they've had to pull him off ECMO before finishing the treatment. His parents are doing very well considering...they have an AMAZING faith and are such a testimony to so many. Please keep E's family in your prayers.
A little side note...one of Brayden's nurses (from when he was very ill) came to check on us today. She told us that Brayden was closer than we ever knew to having ECMO. Apparently, before we arrived one morning, the ECMO team had been called in to set up because his blood gasses had gotten low again. They had actually been there, getting ready to start ECMO and his #'s started improving again. They didn't want to tell us about it until he got better. We KNOW your prayers have made the difference for him! THANK YOU!!
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