Saturday, January 31, 2009
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!
Friday, January 30, 2009
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):
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!
Thursday, January 29, 2009
This was before:
He really liked the lullaby's! The nurses kept telling us today that they wanted to take him home. He is such a good baby! He is still being weaned off of his withdrawal meds but he is doing very well.
Thank you for all of your prayers!
Wednesday, January 28, 2009
Today I was able to bathe and change him....here he is post-bath:
Tuesday, January 27, 2009
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!
Monday, January 26, 2009
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:
Sunday, January 25, 2009
Daddy was able to attempt his 5pm feed...but it just succeeded in making him mad:
He managed to pull out yet another IV so they decided to put the newest one directly into his head, which scared me to death when we arrived this morning...no one had mentioned this change to us (we call every morning when we wake up). Tomorrow that IV should come out which is great!
They've also continued to up his feed amounts...he is at 26ml's right now. I think he has to get up to around 60 or so at each feed but I'm not quite sure....thankfully our favorite nurse will be there tomorrow and I'm sure she will know! We are still hoping that Brayden will be ready to go sometime this week!
Thank you for continuing to pray for all of the NICU babies!
Saturday, January 24, 2009
The front says "Team Brayden, Phillipians 4:13" and has the ACH logo on it:
The back says "TEAM BRAYDEN PRAYER WARRIORS" and has the verse printed on it:
Here is a pic of Brayden with his tee:
Overall today was a very good day for Brayden...he just no longer has an interest in taking his bottle. The nurse said that babies who have had PPHN normally take awhile to get used to the bottle. The good thing is that he is properly digesting all of his food and being able to take all of his feedings. Tomorrow he should be off all meds and off his nasal oxygen tube. His nurse practitioner predicted that he would be here about 5 more days...mainly our obstacle now is feedings.
Friday, January 23, 2009
As his mom, I knew that he would know exactly what to do and that he was going to surpass her expectations of him...and I was so right! Right before she gave him the bottle she said that he would only have 20 minutes to eat it and if he didn't finish it to not be surprised. Well, I was guessing that he would be like his daddy and have no problem with it, and when he downed it and was fast asleep five minutes later, she was so in shock!
We just found out that they checked his stomach and that he had properly digested everything so they will continue his feedings, but tonight he will be getting food through his tube. We will have to see what tomorrow brings as far as how he will eat.
They wouldn't let me give him the bottle because the nurse was afraid something might go wrong, so here is her feeding him (at this point he had fallen asleep but was still eating):
Here is Daddy holding him and rocking him to sleep:
Yesterday we had the opportunity to go up on the roof of ACH and see the helicopter that brought him to the hospital:
One major thing happened today...at least its major to me. Chris and I were on our way to the coffee bar downstairs while Brayden napped (he fights sleep if we stay there) when my phone rang. It was a 501 area code which let me know that someone from the hospital was calling. I handed the phone to Chris because I was scared something wasn't right and I knew he would handle it better than I would.
Thursday, January 22, 2009
Since pictures can say more than words, I'll start with this...
I got to hold Brayden for the first time today!! It was SO GREAT! His vent tube is GONE and he now just has the oxygen tube in his nose! He will also be TOTALLY OFF his nitric as of 11pm! Tomorrow I think they are going to feed him through the tube that goes into his stomach and if he can tolerate it and properly digest his food, they will start him on the bottle.....AND if all goes well with his feedings I will be bringing him home in about 7-10 days!!!!
Here is Daddy with Brayden (one of his eyes is open!):
Our Family:Daddy's first diaper change (he did WAY better than Mommy...guess that means diaper duty for Dad!)
He loves holding Daddy's finger...
We are so grateful for all of your prayers. We also thank you for all the prayers you have sent up for all of the other NICU babies and precious Harper. Many of you asked about the baby that was abandoned. From what I have gathered from some of the other NICU parents who've been there much longer than we have, there are several who have been left and protective services have been called. I don't know very many details on them, and I also don't know how accurate the information I've been given is, but I do know those precious little ones need our prayers. If they would let me, I would take every single one of them home. I am so thankful to the nurses who love on those babies and give them so much attention. Thank you so much for praying for the babies and their nurses.
A lot of you have also asked how I'm doing post c-section. I can honestly say I have the world's best husband. Every day he bandages me up very carefully. I'm healing well because of how attentive he has been to me. He doesn't let me get in/out of the car without his help let alone sit down, stand up, pick anything up etc. I've thanked God for him every day, but since going through this, I have a whole new appreciation and love for him. He really is the best.
I can't say it enough...thank you for your prayers. I wish there was a more elaborate way to say it, because it just seems so simple in return for what you have all done for us. Thank you from the bottom of our hearts. We thank God each night for every single one of you.
Wednesday, January 21, 2009
I mentioned yesterday that they were going to be lowering his nitric. From what I understand, the most the normally lower it is 2 units per day. Well, last night when we left Brayden was on 20 units and as of now, he is down to 5!!!!!!!!!!!!!
They will continue to lower his nitric 1 unit every 6 hours. Also, as of tonight, he was on 31% oxygen!
I don't have a picture, but I got to change Brayden's diaper for the first time today! I was a mess! I am almost scared to touch him (even though he got rid of a lot of wires today) and I watch his vitals like a hawk to see if I am messing things up. I am fairly sure that I am the world's worst diaper changer - ever. But that's okay, I'll figure it out eventually!
I am still very worried about the MRI that they will do once Brayden is totally off the nitric. I've talked to the Nurse Practitioner a couple of times about it and she doesn't seem to worried, but it's very hard to tell what if any damage has occurred.
For those that asked, Brayden has had 3 blood transfusions. Part of the reason for that was at the beginning they were drawing blood gasses every hour and it was just taking too much from him.
Daddy and his boy:
The world's best nurse ever...Sayward and Brayden:
We still covet your prayers and are so thankful for each and every one. We ask that you continue to pray for all the sick babies...Brayden, Harper and all of the pod mates. We also ask that you remember their nurses and doctors who diligently care for our sweet little ones. There are a few babies in our NICU that don't even have names (and at least one that I have heard of who was abandoned after its mother found out the condition of the baby), and it just breaks my heart. Please especially remember them.
Thank you and God bless you all.
Tuesday, January 20, 2009
Today was Brayden's ONE WEEK BIRTHDAY!!! And he has had his BEST day yet!
Dr. Arrington came by this morning when he saw us come in (which I love, because he's the best)! And we got our first piece of great news for the day....
It looks like Brayden no longer has PPHN!!!
I talked to his morning nurse and she said that it's very, very uncommon for PPHN to go away this fast. So, YAY! Go God!
Then this afternoon we went in to visit with him and he was down to 77% oxygen on his vent! Yay! We just got back to the hotel and Chris called our favorite nurse (hi Sayward if you are reading this!) and she said he was down to 70% and they are talking about weaning him off 5 points (or whatever they call it...it's not a percentage) of his nitric!!!!!!! We were told before that the most they wean is 2 a day, so this is a huge praise! Once Brayden gets down to 60% on his oxygen they are are going to start the wean on his nitric, so please continue to pray that Brayden can tolerate his weans!
I really think my little Brady Bear has his Daddy's competitive spirit and he wants to break all records possible. I really think he heard the doctors talk about putting the catheter in his neck and he decided he had better get with the program.
Here are a few pics from today. He is totally off of all blood pressure meds and his jaundice lights. No more blue pictures (though I love that one where he is holding my finger)!
His swollen (but totally adorable) face:
Me and Brady:
Daddy and Brady:
We made signs for the end of his isolet, and this is one of them:
We also printed and laminated pictures for him to look at once he can open his swollen little eyes, and we will rotate them out so he always has something new to look at.
Monday, January 19, 2009
Thank you all so much for your continued prayers! Brayden has had another good day! They've begun to wean him off his oxygen and when we left tonight he was down to 93%! Woo-Hoo! When he gets down to between 20-30% they will begin to wean him off the nitric (I was calling it nitrous, opps).
The one piece of possibly bad news we received was that after they wean him off the nitric he will need a brain MRI. There is a possibility of some brain damage, we don't know to what extent but our nurse said that she didn't think it would amount to more than developmental delays if anything, but it's hard to tell at this point.
We received some very thoughtful gifts from bloggers today, and I really want to thank you all. That was so unexpected and so kind of you!
I have a few pics to share as well:
This is Chris and I today with Brayden at the hospital - he is holding onto my finger!!!
Downstairs at ACH is this mural:
This is Angel One, the helicopter that transported Brayden to ACH. This was taken at about 1am on 1-14 when we arrived at Willow Creek to meet the ACH team that would be transporting him:
This is the Angel One t-shirt they gave Brayden for flying with them, and that little thing at the bottom was his bracelet from Willow Creek:
One quick story: Dr. Arrington, the one who started the NICU unit at ACH approached us this morning (which scared me because I knew he wasn't Brayden's attending) and then he smiled really big and shared that his daughter in Wisconsin had found my blog and saw that her dad was treating Brayden the other night and asked him to check in! How cool is that?! Dr. Arrington's daughter - if you are reading this - that was just so cool! Thank you and thank you to your dad, without him I really don't think our son would have made the turn. Dr. Arrington really has a gift from God for treating these babies, and I am so, so thankful to him. God bless your family.
Yesterday we had several visitors drive down to see us. One of them is a good family friend and she kept saying she was pulling for "team Brayden" which led us to think about t-shirts. We're having a bunch of Team Brayden tee's made with Phil 4:13 on them ("I can do all things through Christ, who strengthens me.") and they say "TEAM BRAYDEN Prayer Warriors" on the back.
Once we get them in I will be sure to post a picture.
I wish I had the time to make some sort of blog button for here that says the same thing because all of you are prayer warriors for Brayden and I want you to share in that. The NICU waiting room doesn't have internet access so I can't take the laptop and work on it but I wish I could!
We decided to try and get some good rest last night and we are just getting ready to go to the hospital. We didn't realize how tired we were until we started getting these good reports and relaxing a little. He is not anywhere close to being out of the woods yet but at least we had a full day of good news. Many of you have said how ACH is an amazing place, and you are so right. I was terrified of coming here and seeing the children and the families, but my whole perception has really changed. There is a lot of hope here.
Yesterday Chris' family went home so it is just my parents and Chris and I now. Chris just called the hospital and Brayden had a good night - they decided to hold off on adjusting anything last night because of all the changes he went through yesterday. It seems to have been a good decision because his blood gasses increased from the 120's to the 180's. He is still very critical but is stable. At the time we called the doctors hadn't rounded over to him yet so we aren't sure of their exact plan for today (he gets a new doctor today). The doctor he had yesterday planned on starting to wean him off his oxygen and possibly his nitrous today so I am hoping for that.
So many of you have offered to come by ACH and I just want to thank you! I know you all have busy lives and it really means so much to me that you would offer! We had a surprise visitor the other day - and Angel One Pilot stopped by whose wife reads my blog just to let us know that they are praying for us. I really lost it when he left - it was so kind and I appreciated it so much.
I'll update when I get back to the hotel tonight. Thank you for praying! GO TEAM BRAYDEN!
Please feel free to add the Team Brayden button that Lianna so kindly made to your blog! THANK YOU Lianna!
Sunday, January 18, 2009
Tomorrow they are hoping to begin the long process of weaning him off of his oxygen and his nitrous. If all goes well, at this point, they are thinking that he may not need the ECMO treatment afterall.
Saturday, January 17, 2009
Brayden's jaundice numbers are up to 23 but they say that is the least of their worries, and that it is being caused by all of the medications that he is on. Currently, he is on a sedative, a pain reliever, a paralyzer, a PPHN med, 2 or 3 BP meds and something else....forgive me, I'm super tired and I know I'm missing one med. It is very hard to see all of these things being pumped into him.
I don't have new pictures because he is under two very large jaundice lights and the pictures aren't turning out. His little skin is drying out from the lights and I just want to make it all better and make it all go away but I can't. But God can, and he hears our prayers and I am so thankful for each and every one of you and your prayers on his behalf.
Thank you so much to all of you...those I know, those I have met through Blogland and those who have found our story through all of you who have posted prayer requests on our behalf. We love you and thank you from the bottom of our hearts.
Friday, January 16, 2009
Today started very rough. I signed documents to allow ACH to perform the ECMO treatment on Brayden. His numbers were dropping and he was having a hard time. The test after I signed the documents showed that his numbers went up so the doctors decided to wait another hour and test again. Again, his numbers went up. (His numbers = gasses found in his blood - his lowest number was 80). We just got to the hotel and called again to find that his number are still rising (he's at 162) and they are thinking about weaning him off of his blood pressure meds.
We need to get his number to be at 200 or above and to stay there for a period of at least four hours (I think - I am so tired right now but I am pretty sure that is correct). If he can do that it will show the doctors that he is transitioning - aka realizing that he is not a fetus and he is not inside of me anymore.
As of now we still aren't supposed to talk to him or touch him much. He hears our voices and knows who we are and he tries to wake up from the morphine which only hurts his progress. It's very, very hard to not talk to him or touch his sweet face. I still haven't held him and it may be several weeks before I can but as long as he is getting better that is all I care about. It breaks my heart to know that he knows my voice and just wants to see me but I have to do what is best for him.
Again, thank you so very much. We are so thankful for the support and prayers. ACH has been a wonderful experience for us. I hate that we have to be here but everyone we encounter is so kind and genuinely want to help.
Edited to Add: Please lift up Kelly and Harper in your prayers. I don't know the details as of yet, but Harper is being flown down here to Little Rock for treatment in the NICU. I feel so much for Kelly and Scott since Chris and I are in the same situation. Please lift them up in prayer as well.
Brayden is in critical care at the NICU of the Children's Hospital. We just got a call this morning that he is doing a little worse after having a fairly good yesterday. We don't know what to think or what to do at this point. The doctors are doing everything they can. His condition is calledf PPHN which basically means pulminary hypertension.
Please, please continue to pray for our little boy. He is fighting soooo hard.
Wednesday, January 14, 2009
They came and took him by ambulance on a ventilator which was very, very hard for me to see. He is already showing improvement and we are so thankful for that. Once I get released I will go stay at the hospital with him. For now Chris and my parents are taking turns staying at the hospital I'm at with me (I need a fair amount of help after my c-sec) and going to stay with Brayden. I really want him to be surrounded by people whose voices he can recognize.
Here are a few pics - they were taken with Chris' phone so they aren't the best quality. Please keep our baby in your prayers. It is so hard to not be with him.
You can see in the pic below that he looks a little blue...he was born with fluid in his lungs. Other than in the pic below I haven't gotten to see him at all. I haven't gotten to hold or touch him at all. He is in the nursery and right now we are waiting on the pedi to come in and tell us what happens next...last night they had him on oxygen and 2 antibiotics.
I haven't slept at all because I was so upset last night. There are two women next to me - one each side who had their babies with them last night and it just made me sad that my little boy is all alone in the nursery. More later.
Tuesday, January 13, 2009
I should be checked again around 2:30 and then hopefully they will be able to break my water and start pitocin.
We just realized that we have Internet access so I might be able to give a few updates periodically.
Last night I checked in at 4:30 and by 5 had been given the Cervadril. Pardon my many misspellings...I'm doing my best with the medical terminology!
This morning at 5:30 my nurse came in to pull out the Cervadril and check me and....NO CHANGE. I wanted to pull my hair out.
Last night they had given me Ambien to help me sleep (all it did was make me soooo groggy) and this morning the nurses came in and started pulling on cords and pushing on my stomach and making me change positions. I was so groggy and couldn't word my questions and Chris was asleep during all of this. The next thing I knew I had an oxygen masked strapped to my face so then I was really unable to ask anything. Finally I figured out what was going on. Brayden's heartrate had dropped to 50-60bpm and wasn't coming up. The nurses eventually told us that he had been playing all night long and that they think he just got tangled up.
It's been a little over an hour since that happened and he seems to be doing well again. I was given a pill (Cyotec?! Something like that...) this morning to increase my contractions and attempt to make some progress.
My contractions are definitely way more noticeable and frequent and I am having a lot of back pain.
I am going to continue to wait for the epidural. When they end up ordering Pitocin for me I will want to be sure to get the epi but for now I can deal with the pain.
So that's the update for now...The ambien hasn't quite worn off so I hope this makes sense!
Monday, January 12, 2009
Last night we went out to our last dinner (haha) at one of our favorite resturants, Ruth's Chris. It was funny because we are there a little too often and the staff all knew us and wanted to talk about the big day!
And here is my last (hopefully) belly pic of Brayden! 39w2d! (I say hopefully because now I have a fear that my induction will fail and I'll be sent home...)
I spent most of last night dreaming up things that could go wrong and psyching myself out but I think I am over that now. I just want to get this ball rolling and hold my Brayden!
Thank you so much for all the prayers. We are taking the laptop with us but I don't know if they have internet access at the hospital. I will hopefully be updating very soon!
Friday, January 9, 2009
So tonight my wonderful hubby took me to Olive Garden (he really doesn't care that much for the OG, so this was an act of love in my book). We went to the promenade to do some walking and then we headed to Coldstone (where a woman literally almost ran me over in the parking lot while I was getting out the car....)
And when we came home there was a box on the porch (which I thought my be Chris' baby carrier I ordered from Babies R Us).
This is what it was:
(Anyone recognize that green?)
Kate Spade recently started offering a black and white purse with their classic Kate logo, and he bought one for me! Woo-Hoo! OK, I had to brag on him.
And for good measure here is my 38w6d pic: