Christmas pics

Here are some pictures of Ty this Christmas season....enjoy

CDH and my New Blog

Hello everybody,

I've decided to start a new blog. My new blog will be about our life today. Jackson of course will be talked about, because he is apart of our family, but I want this blog to be about CDH. I have a few things that I'm doing for the awareness of CDH, and alot of stuff i need to inform everybody of, and that's what this blog will be here for. I can't wait to start my new blog, and to fill you all in on our day to day life. I will post the name of my new blog as soon as i make it. Dnt forget about this one though, because I'm doing alot for the CDH world, with alot of help of course......Love you all!


Candice Brooke

Great Pics! Should I start a new blog?

Here's a few pics from this past month.....and i'm thinking about starting a new blog about our family. Think thats a good idea? Or should I just post on here??? I'm really not sure, but i love letting my feelings out, and talking about my sweet family.

Life today

I just thought i would finally post my slide show of Jackson. I hope everybody is doing great. I miss waiting for Jackson to get here, those were happy times, I thought everything would be fine. I loved doing my little blog. I know some of yall would love to know what we're doing now, as well as how we're doing. Well It's alot harder then i thought it would be to tell the truth. I mean the first week after Jackson was gone it was so terribly hard, but i was still in shock and didn't really realize that we would never see Jackson again. Now that it's sunk in and I'm in reality it's very difficult. I'm ok i suppose but still in need of lots of prayers. Today has been one of those really hard days and I can't seem to make myself see that it's going to be ok. I know this day will end and tomorrow will probably be better, but just because i have to make it better. Today was one of those days were i didn't want to hide my pain, or make it better, or even feel good. Sometimes you just have to have those days. I am not the same person that i was before and never will be, I hope to become a better person because of this. Rob is doing pretty good. He's still at the same job and we're still happy has ever. I tell him all the time that if i didn't have the happiness between us that i wouldn't have been able to make it through the loss of Jackson. I have truly found my soul mate. Thank you all for being a part of our life's. p.s. Ty is doing wonderful too!

Turn your sound on........Baby Jackson we love you

Make a Smilebox slideshow

Good Bye

Hey!

Well sorry I haven't put up the pics yet, I can't find the cord to my camera. I'll have them up soon. I just wanted to thank everyone for their sweet comments, they really do help me. I read the most amazing words, they really lift me up. This week has probably been the hardest week I've had since losing Jackson. I have been more depressed then ever thought possible. I've come on this blog and vented enough though so i didn't want to get on here and be a downer for anybody else. I know some of my blog followers haven't had their babies yet, and they are scared to death. I don't want to freak them out anymore. This post is really just to let everyone know I don't think I'll be doing my blog any longer, besides the slide show and pictures I will be posting. I feel that Jackson's journey is over, and well as for Rob and I we have an extremely long rough road ahead of us, but we have to be ok. I don't want to depress people and I have no baby to update on now. I so very much wish that this blog wasn't ending and I had Jackson to update on, but the truth is I don't and it saddens me to get on her and write when i thought i would be writing about jackson Mac Beal forever on here. I love my baby boy and always will! He will always be in my heart, and I'll never forget the 10 most wonderful days of my life with my second born son baby jackson. He has touched so many people, and helped me understand how precious life really is. Jackson is my son, and unless you have lost a child nobody will ever understand the most awful pain that a person can mentally endure, but the pain is worth it just to have had Jackson for the 10 days that i did. I would go through my awful labor being care flighted, more labor, and then a c section again just to have those 10 days of my baby boy. I so wish it could have been forever but god had other plans. Thank you all for your support and kind words.
Candice Brooke

slide show and pics soon to come

I know i never posted that many pics of Jackson, but i think today I'm going to post some. I also have a slide show to put up......I MISS YOU JACKSON! MOMMY AND DADDY LOVE YOU SOOOOOOOOOOOOO MUCH!

POEM

Here's a poem that I found. It's only been a month and not a year for me, but this is how i feel.



Another anniversary of the day that I lost you
It's really very simple, that day I lost me too
Although I try to find the me that I used to be
I will never find that person, for she is lost to me

I know it sounds confusing to those that have no clue
That when you lose a child, you also then lose you
It sounds like one big riddle that I should work on through
But there is not an answer, not one thing I can do

Grief is what has come to me and changed me from within
It has burrowed deep inside of me, like it's a second skin
No one should live on this way but there was little choice
When grief was handed out to me, I didn't have a voice

I often wonder who I am since losing my sweet child
In the world in which I live in, I've been forced into denial
With every anniversary that marks another year
Are thoughts that come from others, that my pain should disappear

I am a mother who has lost a child on a tragic day
And with that loss it took my dreams, and visions far away
I would have chose to leave instead, for life is not so good
For all that ever mattered, was my son and motherhood.

update, and a little on Ireland

hello,

Just wanted to stop and do a little updating. My little boy Ty just turned 4 yesterday and we had his party on Saturday. He had a blast! Rob and I got him a trampoline, and then he got a lot of toys from his friends and cousins. After the party we had some friends over, and we stayed up and talked all night. I say we had friends, but what i mean is Rob had friends over. We all had a good time though and it kept me from going to bed and thinking of Jackson for 5 hours until i finally go to sleep. I do that every night, and then i dream about him. I try so hard not to think about him when i go to bed, but my head just wont stop. The birthday party was kind of bittersweet because on that day Jackson would have been 1 month old. Also Rob and i use to talk about the day Jackson came home from the hospital, and Rob always thought that Jackson's stay would be short no matter what Jackson was going through (ecmo) Rob seemed to think as soon as he got through that everything else would just fly by. I would always say " Rob i think he might have to stay in there a bit longer but that would be the best thing in the world for us to bring home our new baby boy on Tys birthday". We really believed that Jackson was going to make it and get to come home with us. So i started thinking what Rob use to say and how we use to think, and i got a little sad while Ty was opening up his gifts. I made myself get it together and finish the party, everything ended up being better. It's just hard to think that i just had a baby 4 weeks ago and he died. I don't get to show him off, i don't get to love on him, he doesn't get to be at our family birthdays or holidays, he doesn't even get to have his first birthday. I don't see how this is Gods plan, but it is. We will never get to have our whole family together, even if we have 5 more kids our family will never be complete. It saddens me that death was the outcome for our sweet baby Jackson. It saddens me that i dream about him every night, and Ty doesn't have his brother here with him, that Rob doesn't get to be a daddy to his first born son, and that we will never be ok. I am so very saddened by all of that, but we are making it some how and one day we will get to see our Jackson in heaven. We love you Jackson!

I also wanted to mention Ireland and her family. Ireland lived for 11 days with cdh and passed just 2 days ago. It really breaks my heart for this family. I know all to well what their going through, it is horrible. I am praying for you Chanda, Mikey, and Tristen. Only God can help the pain. I know the pain is so so hard to deal with right now, and i can't tell you that is gets easier because it's only been 3 weeks since we lost Jackson and it still hurts the same. I don't understand why God has baby Ireland and she's not with her parents, but there is a reason, we just don't understand. I thought Jackson was perfect as did everyone that met him. I know yall thought and felt Ireland was perfect. I really do believe that these babies that leave the earth so early are perfect. I think God made them perfect, and you see no perfect person can be on this earth it's not possible. We are sinners. God just let us see what perfect was and gave us the chance to love our perfect babies. You see i think God gave us a gift just to be able to hold and love a perfect pure soul that he created for us. So as much as you miss Ireland, consider what i have said and know that she was just to perfect for this world. Love you both.......

PRAY PRAY PRAY...4 IRELAND!

PRAYING FOR IRELAND, CHANDA, AND MIKEY! THEY ARE FACING WHAT ROB AND I FACED THE LAST 2 DAYS OF JACKSONS LIFE. IT'S JUST SO HEARTBREAKING. I STILL BELIEVE THAT IREALND HAS A CHANCE. ALL I CAN DO IS BE POSITIVE FOR THIS VERY SWEET FAMILY, THERE IS STILL HOPE IN HER SITUATION. AS LITTLE AS THE HOPE MIGHT BE, IT'S STILL HERE! PLEASE PRAY FOR THIS FAMILY, THEY NEED SO MANY PRAYERS NO MATTER WHAT THE OUTCOME. I'VE BEEN THERE, PLEASE JUST PRAY.
CANDICE BROOKE

IT'S SO UNFAIR.....

It's so unfair! I can't stop crying tonight, and i miss him so bad! This is just the worse thing ever. It's just not fair. I miss my baby so much. The hurt i have is like no other pain i have ever felt before. My heart just hurts so bad and i can't make it better. His room is still set up and waiting on him. I just can't get rid of his things.......I'm just having a hard night and thought i would post.


CANDICE

MISSING BABY JACKSON

Sorry i never blog,

Every time I think to post, I just can't come up with the words to say. All I know to say is that CDH is horrible. I could go on and on about how bad my days can get if i let it get to me, but who wants to hear all that...I will say that I never in a million years thought that I would have to suffer the loss of my child. I hear of mothers all the time that have gone through the loss of their children, and I always thought there is no way in the world that i could ever handle that if it were to happen to me. Guess what it did. Even though it is the hardest thing in the world I believe God has helped me cope. I really wouldn't be strong enough without him, I didn't think I could ever handle something like this, but I'm doing it. There are some days that i just can't get Jackson out of my head and I think i just don't want to go on, I just want to be in heaven taking care of my baby and not suffering anymore, but as soon as i think that God lets me know real fast that i have a family here that needs me and Jackson is better then ever. I still think he needs his mommy though. Ok all you people out there don't take that as i want to kill myself. I've never thought that at all, I just think i want to be with my son, my baby boy that I love so much, then i realize i would have to die to be with him and I don't want that at all. Ty needs me! Everyone tells me that I'm so strong and they don't know how I do it, like i said before it has to be God, because I don't know how i do it either. I don't feel I'm a strong person. I feel like I'm falling apart on the inside and I just know how to hold it in very well. I'll tell you the strongest person I know and that is Rob. He has been so strong for me and Ty. I know he hurts so terribly bad but yet he still goes to work everyday and comes home with a smile on his face ready to see his family. He loves us so much and it's just amazing to feel that kind of love. Rob has been through so much in his life and now he is suffering the loss of his baby boy. That's something else i don't understand, why do some people have to go through so much in their lifetime? Rob is a great person, yet he has had to deal with alot of bad things. He still loves God so much and never questions him like i do. He knows God has a bigger better plan in the end, and so do I, but I don't like not understanding. Lets just say Rob has a HUGE heart and spirit that can't and wont be broken. One day soon I'm going to post about how Jackson did on ecmo and about all his days before he past away. I never got on here to blog while he was in the hospital so people really don't know. What people will be shocked about is that Jackson did very well on ecmo and was always alert and holding my hand. For all you CDH parents out there his sat numbers were always 95 plus and his C02 never came back bad, not one time. The only time his numbers went down were when they had to change his machine. Jackson had 4 ecmo machines in 9 days! The 10Th day they were going for the 5th one but we all know the ending to that. The doctors would tell me that every time they had to change the machine no matter how well the baby is doing it puts them way back! Even if he didn't need ecmo anymore and they had to change the machine it is bad. See it's not the flow that was being cut off that hurt him or set him back but it was his body having to get use to all the new plastic of the new machine. Even my body would go crazy if my blood was having to go through new tubes and plastic every 2 days. Jackson's body would have to adjust to these new machines and he did great every time! His numbers would just go down for like an hour and the doctors were amazed. I still haven't read one story or ever heard of a poor little baby's machine going out every 2 days! Even the ecmo people couldn't believe it. I have no idea why his machines weren't working but it really just pisses me off. When they did Jackson's trial off of ecmo his numbers stayed in the 90's, which means he didn't need it. As soon as they did that trial his machine started going out before they were 100% sure rather to take him off yet and so that was another set back. He was off ecmo for 2 hours and did fine but they wanted a little more time to make sure he would stay that way and his machine got a clot, and then of course he had to have the ecmo. There's lots more to that story though and I'll write some other time about it.....thank you all for the prayers and support


Candice

MISS IRELAND ROSE

I just wanted to congratulate Chanda and Mike Brady. Ireland Rose Brady has arrived! I have been keeping up with this sweet family for a few months now. For those of you that dnt have a CDH blog and are just my friends, Ireland also was diagnosed with CDH while in the womb. I pray for this family and I ask that you all will 2. I know how much they need it. Just watching Jackson trying to get better and all the Dr's working on him was hard, so even if Ireland Rose is doing the best you can do with this awful defect it is still very hard on the family and miss Ireland. I have so much love for these CDH babies now that we've been through it. These babies are just so strong and fight so hard. Fight Ireland fight!



candice

LIFE AFTER HIS DEATH

My my I don't know where to start,

First off I want to thank Stephanie and Shawn Studdard for posting to my blog while i was unable to. That helped us more then they'll ever know, and it kept everybody from worrying so much. I know when i was keeping up with other blogs and i didn't hear anything for a while i would begin to worry. The studdards have just been amazing and have done way more then just keep my blog updated. They were truly a blessing to us. I knew God had us find them and meet them for a reason. They were so busy in their own lifes with a baby in the hospital, another at home, and their daughter hollie as well, but they still kept doing for us. We thank you and Shawn from the bottom of our hearts.

We had Jackson's funeral yesterday, and it was just precious. So many people sent flowers and love. We had a family lunch before the funeral that was very thoughtful and delicious! The funeral was extremely hard for us, but God helped us through it all. I still can't believe my baby boy is gone. Even though we knew he was really sick we just never thought that he would be one of the babies that wouldn't make it. We just fell in love with him so fast. I will never forgot the 10 days that i got to hold his hand, love him, kiss him,and change his diapers. He was just so amazing. He always wanted to hold one of our hands, and he had such a tight hold. I loved it when he would open his eyes and look at us. He tried so so hard to stay alive. He wanted to live. He would kick and try to pull his tube out all the time. The doctors even said he had a very strong will to live. Even a lady that was working his ecmo machine told us that you could tell the babies that were going to make it most of the time because they wre so strong, no matter what happened that day he always stayed strong, he never just lay still. God just had other plans for my sweet little man. The hardest part for me is that no matter what the doctors say i know that my baby boy suffered. I don't know why God let him suffer and fight so hard and then took him away. He wanted to live so bad, and I understand he wasn't meant for me to keep and be a mommy to, so why should he have to suffer???? I know God has a plan and that i will never understand, but I'm a little bitter. My heart is just so broken. I must stop writing now it's just to hard at this point.....I just wanted to give everybody an update.

I also want to thank the Parker Reese foundation for the beautiful flowers that you sent and all the prayers.....Thank you everybody for your sweet comments and prayers, we sure do need them......

love you all......candice brooke

Arrangements

Hi everyone. It's Stephanie, Shawn's wife, and Candice's CDH friend. I spoke with Candice today, and they have arrangements all set up. Jackson's funeral will be held at the Davis Memorial Funeral Home in Brownwood Texas on Wednesday. It will be a small ceremony with close family and friends. Here is what Candice has suggested for those who are interested in sending flowers or making a donation...

Flowers can be sent to the funeral home at 800 Center Ave, Brownwood, TX 76801.

A good friend of theirs has also set up a Memorial Fund. Those details are...

Jackson Beal Memorial Fund
Texas Bank in Brownwood
325-649-9200
#417300
PO Box 1429
Texas Bank 405th Ave.
Brownwood, TX 76804-1429

She also suggested that you can make a donation through Breath of Hope (http://breathofhope.bwdsandbox1.com/) or Cherubs (http://www.cdhsupport.org/) in Jackson's memory.

Candice said that she would be on later tonight to post more. Please continue to send your comments, love and and especially prayers to/for them. Their hearts are hurting right now!

Love,
Stephanie

Angel Jackson

Angel Maxton's blog says that "Some souls are so special, heaven can't wait." I believe that is the case today as we say goodbye to a brave CDH warrior who fought so hard during his short life. Baby Jackson took his last breath today around 1:00pm in Candice's arms. Rob and Candice are shattered right now, living every parents worst nightmare, but were remarkably collected as we spent time with them at the hospital this afternoon. It's not much of a surprise since they have shown unbelievable strength and courage during this long and painful journey. We know there is a reason and a purpose for all of this sadness and pain although we remain frustrated as we can't truly wrap our arms around it. Baby Jackson has touched many lives and taught us what true courage and bravery are all about. He has taught us to appreciate life more while demonstrating just how fragile it really is. We are privileged to have shared in Jackson's story no matter how short the chapter.

Rob and Candice, Stephanie and I are so very sorry for your loss. If there is anything either of you need, you just simply need to say the word. Take care of each other friends and we are here if you need us.

Shawn

Prayers needed for Jackson and Family

It is with a heavy heart that I update all of you on Jackson's condition today. Jackson has not made good progress overnight and the medical staff has let Candice and Rob know that Jackson won't be able to overcome the hypertension. Around 5:00am, his body gave signs that it just couldn't handle the situation any longer. While his heart and lungs appear to be stable, the stress on his body is just too much. They estimate he has probably around 8 hours until he will leave this amazing couple and truly be at peace. Rob and Candice find some comfort right now as they know Rob's father is awaiting Jackson's arrival with open arms in heaven.

Jackson is not in any pain right now and they are preparing him for Rob and Candice to spend time with him this afternoon. Stef and I are heading up to the hospital in just a little bit to be with them.

Please pray for this dear family that they find the strength to endure this afternoon and the days, months, and years ahead of them without their precious Jackson. Please also pray for Jackson that he has a peaceful transition from this world to a much better place in heaven.

Shawn

Still on ECMO

I wanted to give you all an update on Baby Jackson. Jackson has been on ECMO for 9 days now and unfortunately hasn't made a lot of progress. He has had at least one circuit change and didn't do to well. He is stable right now, but surgery isn't on the immediate horizon as it was a couple of days ago. His face is swollen, but the rest of his body isn't as swollen as much as it could be from ECMO.

The hypertension is still pretty severe right now and it doesn't look like he will be coming off ECMO in the immediate future. Our hearts are breaking for this family as we understand that they are going to give Jackson the weekend to make progress and then assess Monday what, if anything, can be done further to help him make progress. They have done about everything possible up to this point to get him over this hurdle, but the hypertension is persistent and not showing signs of decreasing. As Candice told Stef today, they are going to try two more types of medicine on him and give him through the weekend, and will assess from there.

We know that there is still hope as many baby's have been on ECMO much longer than 9 days and survived. As you can imagine, Candice and Rob are devastated though with the progress right now. We are praying that Jackson can make some positive progress over the weekend and hope you will join us in prayer for Jackson and for the family.

I will update as soon as we have more information.

Shawn

Current condition

Good evening everyone, it's Shawn again. Stef spoke with Candice tonight and we do have some updates to post about Baby Jackson. First, he has been moved to a high frequency oscillating ventilator (HFOV) and this appears to be working well to keep Jackson's lungs inflated while on ECMO. Candice can see his chest moving up and down which I know is very reassuring to them.

They will take another x-ray tonight to see how his lungs look because they are now contemplating surgery. It looks like they are leaning towards Jackson being repaired while he is on ECMO and the x-rays will be one of the clues to when that moment of opportunity presents itself.

We are currently waiting on a picture of Baby Jackson that should be here tonight sometime and we will update this post with that picture.

Candice sounds like she is holding up well, but is just exhausted as she spends all day at the hospital and has to be emotionally drained, not to mention physically exhausted since giving birth under very stressful circumstances.

Honestly, Candice and Rob are in a situation that Stef and I can't fully appreciate as we were spared ECMO and this chapter of CDH. Some of you who are reading this know the ECMO world far too well and can relate first hand to the emotional battle they both must be going through. Please pray not only for Baby Jackson to fight and overcome this ECMO stage, but also for this very sweet family to find the strength to endure this chapter and comfort in the current strategy to save Baby Jackson.

Shawn

Resting on ECMO

Baby Jackson is stable and resting on ECMO. For those of you who don't know about ECMO, it is basically a heart/lung bypass machine that will give Jackson's lungs a rest and time to develop more. ECMO is used when the ventilator settings would have to go outside the "gentle" ventilation strategy settings to keep O2 and CO2 measurements in check. To avoid compounding the already critical situation by damaging his lungs with more aggressive ventilator settings, they bypass them with ECMO and perform the O2 and CO2 gas exchange in the blood in a machine and then return it to his body.

Stef did get to visit Candice today and she is still in a lot of pain. She may be discharged as early as tomorrow. We did hear that they determined the liver is down below the diaphragm which is good news and should make for an easier surgery. The surgery isn't on the immediate horizon as they give Jackson some time to rest.

Please continue to pray for this little CDH warrior who is fighting so hard to get through this difficult battle.

We will update as we get more information.
Shawn

Current status

The medical team worked for a few hours last night trying to stabilize Baby Jackson on a ventilator, but determined that wasn't going to be possible. Around midnight, he was transferred over to Children's hospital and was placed on ECMO to give his heart and lungs some time to rest and develop.

Candice is doing ok, but she is still in a lot of pain. We weren't able to see her or Baby Jackson today, but hopefully will tomorrow. Candice was able to see Jackson last night before he was transported to Children's.

I am really at a loss for words right now when I think about everything this wonderful family has been through just over the past couple of days. I will continue to update you all each time I get a status update and ask that you continue to pray for this little fighter.

Shawn

Jackson has arrived!

Jackson was born tonight sometime around 7:30. I don't have a lot of details, but will continue to update as info comes in and definitely will have more tomorrow when we are up at the hospital. Jackson appears to be in pretty severe respiratory distress right now and the doctors have indicated they are struggling to stabilize him. They are going to continue trying to stabilize Jackson for a while and then assess if ECMO is the right path to take.

We just received the first picture of Baby Jackson:

The family is struggling to take it all in right now and are terrified. We anticipated Jackson might be critical early on and it looks like that is the case. Please pray for this family who is searching for answers and trying to make sense of the current situation and strategy and please pray for Jackson to fight like mad to stabilize.

I will update as I get more information tonight or in the morning.

Shawn

Baby Jackson's not here yet..

But it should be soon! Sorry for the delayed post today. Stef and I have been up at the hospital and we were able to go back and visit with Candice and Rob. Both of them are doing good and holding up very well given the eventful night they had. Candice was put back on Pitocin this morning at 7:00 and she is making some progress with labor so it should be any hour now.

The Parkland team is all ready for Jackson's arrival. They have the isolation room all prepped and ready to go. This is the same room Kamryn was in after she was born. Children's hospital is also prepared with ECMO if needed so everything is in place and on standby right now.

My next post today should be to announce the arrival of Jackson and it will be posted the minute we get word!

Stay tuned...
Shawn

Things are a little crazy right now..

Hey everyone,
Well, if the CDH situation wasn't enough to worry about, Rob and Candice have another event happening that is pretty odd. I am not sure if I have a complete understanding of the whole situation because I just can't believe it, but here goes.

Like I posted earlier, the medical team at their hospital figured out they didn't have an ECMO machine available until after they started inducing Candice. They were told that a baby would soon be coming off ECMO so it was no problem and they would just let the labor continue on its own. It appears that plan B is now in progress.

There isn't an ECMO machine available after all so they are getting ready to Careflight Candice to Parkland hospital in Dallas which is where Kamryn is. Children's hospital is connected to Parkland so if Jackson does need ECMO it is just down the hall where Kamryn had her surgery. We texted Candice back to see when she was going and haven't heard back so she may be in the air now.

I promise to let all of you know the second we hear something more. We will be up at the hospital with Kamryn tomorrow so we can definitely give a first hand account of how things are going.

More to come...

Shawn

Quick update

Stef talked to Candice just a little bit ago and Jackson hasn't arrived yet. They did start the Pitocin this morning and labor has been going well. Candice is doing fine and has her epidural in. There was a small change in plans with inducing her because they just found out that there are too many babies on ECMO right now so they stopped the Pitocin and will let things take there course from here. There is a baby coming off ECMO in the next hour and they just want to be safe and have that option if Baby Jackson requires it.

That's what we know right now and will update everyone the second we hear anymore news.

Shawn

The BIG day has arrived!

Hey everyone, it's Shawn (Kamryn Hope's dad) posting for Rob and Candice. They want everyone to know that tomorrow (Tuesday) is the big day for Baby Jackson's arrival. Candice will be induced at 7:00am and sometime tomorrow they will truly begin their CDH journey. Stef has been talking with Candice and she is doing well. She and Rob are excited, but very nervous and anxious about tomorrow. I will post all the info the minute we get word and have information to share.

I remember the excitement, anxiety, and uncertainty both of them are feeling right now and how we were comforted by hearing from all of you. I hope you will join Stef and I in praying for Jackson, Candice, and Rob and sharing your support and encouragement through comments (they are able to view the blog with their cell phone).

Thanks,

Shawn

7/14/09 waiting

Oh,

I've been here for a week now, and still waiting. I'm in Irving with Robs aunt and uncle. We are so thankful that they've opened their home up for us. They tell me all the time that it's no problem at all and they don't mind a bit. They are just worried about this baby, as everyone else is. I still feel bad that we've interrupted their lives. That's just how i am though. I can't wait to be in the hospital, and then the Ronald McDonald house, so i feel like I'm taking care of myself.

Right now I'm still having contractions and am really not able to do much, which sucks! I sit all day everyday, because that's the doctors instructions. I just don't know how much of doing nothing and having nobody i can do. It's getting really hard. Ya who would ever think that doing nothing would be so hard.?

I'm missing my little boy Ty so bad! It is very hard having other people taking care of him while I'm out of town. I've always been there with him. The good thing is that at least he still gets to stay at home. Rob takes him to my dads before he goes to work every morning, and picks him up after work everyday. Ty is fine, but i know he must feel abandon by me. I mean he's only 3, he doesn't understand the situation. He is so excited about his baby brother though. I didn't think he would be so excited about the baby, but he has been the whole time. He knows the baby is going to be sick and I've actually showed him some pictures of babies that are all hooked up to the vents and everything. I did this so he wouldn't be so shocked when he gets to see him. Now when he sees a picture of a cdh baby on one of my blogs that i read, he just says "awwwww that baby is so precious". Now on to Rob. I miss him sooooo bad! I know it's going to be hard once i have the baby and he has to go back to work. He is so great to me and Ty and i love him so much for that. I get to see him on Sundays, but then he has to leave that night to get home for work the next day. So all and all we're all doing good, just all on edge. Thanks again for the prayers and help everyone is giving us.

Love Candice

LOGGING ON AND LEAVING COMMENTS

So,

I have been told by many of people that they either can't get on my blog or they can't leave comments. I have tried to fix this for a while now and i can't seem to find the problem. Today i changed my email to see if that would work, because the email address I've been using doesn't get email. So that might have been the problem.


Please please let me know if you can get on or post comments. So for those of you that haven't been able to get on please leave me a comment and let me know that you can now.......that is if you can! lol


Thank you all for letting me know and for praying for my little baby boy. He really needs it now. I really hope this worked!

Lots of Love Candice

My baby boy

Ok,



Now I can update on my doctors appointment today. The doctor told me that everything in the abdomen was up in the chest now. This is a horrible thing that i just thought wasn't going to happen. His liver is also up in the chest. Most of the babies with their liver don't survive according to the doctor. Sometimes part of the liver is just up, but his whole liver is up. After seeing everything that he saw he decided to do the LHR. LHR is a lung to head ratio that the doctors like to do on these babies to kind of give them an idea where we stand with the baby. They measure the lungs and head and compare and some how come up with a ratio. He said baby Jacksons was a 0.2. I have never heard of one being that low. This is not a good thing. He could hardly see any lungs at all when he did the sonogram. I just broke down and started crying when he told me his LHR was 0.2. I have done enough research to know that that was horrible. He just padded my leg and gave me a very sweet look, but never said it's going to be ok. After I got myself together I asked him what baby Jacksons chances were.......He just told me over and over that it didn't look good. I asked him if it was still a 50% chance of survival, because he did have a higher chance then even 50. He said it was much much lower. Oh that just broke my heart. I know i read all these blogs and there are some where the baby's diagnoses is bad like ours and their outcome turns out great. Thats very very rare though, and i know i can't just ignore what the doctor has told me, but i will not let it be a death sentence. Please keep Jackson in your prayers.

Well,

I'm in Ft. Worth until the baby gets here. Really i'm in Irving with Janet and Jackie. We really appreciate them and don't know what we would do without there help. I went to the doctor today thinking he was just going to send me home. That was not the case at all. I was contracting the whole time i was at the doctor, which these days is very normal for me. They didn't like it though. So they checked me and wow I was over 50% thinned and dilated to a 2. He wasn't so much worried about me being dilated because i've been dilated for a month, but not thinned. My doctor said most women are in labor by this point. So i have to stay close by. We also have some really bad news on the baby that later tonight I will update everyone on. I was very shocked and upset by all of it. I still believe that Jackson is going to make it. God will heal him and I really believe that. Sorry not enough time to write more, will be back on here in a few hours........please pray for baby jackson and us.



Love Candice

SO READY TO GET THIS JOURNEY ON THE ROAD!

Hey all,

I'm sitting here watching Sponge Bob with my kid and just thought i would post a little something. I AM SO READY TO HAVE THIS BABY, AND GET THIS JOURNEY ON THE ROAD! I just got through reading Jamie's blog and they are soon on their way home. Congrats guy's! Anyways I just get sick thinking about staying in Ft. Worth with no family. I hate being alone for only one night, just to think it's going to be lots and lots of nights gets me down. I know i have to get over this and just worry about my new little boy. He's going to be fighting hard so that we don't have to stay in the hospital that long. I'm tired of being pregnant and I'm sure Robs tired of me being pregnant to. Well we go to the doctor Thursday to get checked. I really don't want to go, because my doctor is out of town on vacation. So I'll be meeting a new doctor, I think it's pointless for me to go but they want me there once a week! Well maybe I'll have a baby by the 16th????! We'll see.



Candice

Hello,


We went to the doctor yesterday to find out that all these contractions I've been having are not thinning me at all. I have been dilated for 3 weeks now with consistent contractions everyday and no thinning out. This is a good thing, seeing that I didn't want to have this baby early, but now the baby could come at anytime and would be fine. So I wish these contractions would start thinning my cervix. The doctor doesn't believe that I'll go into labor this week, but possibly the next if the contractions keep on, but then again they aren't thinning me! He's not going to make me move up there before i have the baby, i just have to go visit him once a week. In 2 weeks if i haven't thinned at all he's going to give me a pill that thins your cervix out, and then the next day will start the induction. This pill, and of course being induced does make labor harder, or lets just say more painful, so I'm praying that i don't have to take that stupid pill. All and all I'm doing pretty well. I just really want to have this baby because at this point I'm pretty helpless. I'm suppose to stay out of the heat and rest, rest, rest. This is because i pass out for some reason and anytime i do anything or am outside i start having contractions. Wow i don't ever want to be pregnant again! Gaw! I do thank God for this precious baby boy he has giving me and wouldn't trade it for the world. So I guess i just need to stop complaining and deal with it!


After my appointment rob and I drove to Parkland and got to visit Stephanie and Shawn Studdard. I met them through our CDH blogs. I mentioned them in my last post. Kamyren their baby girl with CDH is 2 weeks old now, and i thought she looked so good! I loved talking to stephanie and rob enjoyed Shawns company as well. I was able to go back in the NICU and see Kamyren. I got to touch her and talk to her, it was just an experience that I'm glad that i got to have before Jackson gets here. It was hard to see their little baby girl helpless like that because i just wanted them to be able to pick her up and love on her. I know we will be going through this same thing and it's going to be so hard. Just being there was a little heartbreaking knowing what we were about to face. I believe that little miss Kamyren is going to be ok, and I'm praying our little boy will be fine too.


I'm still having problems with people being able to leave me comments, so i took a few things off the blog to see if that would fix it. I think it did, so leave comments....this way I will know if it worked or not.

Keep the prayers coming....... Candice Brooke

6/30/09

Hey,

So I go to the doctor tomorrow to see whats going on with me! lol....I have so many contractions every day but they always seem to stop. I'm glad that they haven't put me into labor but they sure are a pain in the butt! For the past few days I've been having a hard time breathing. That usually only happens when i have contractions but it's been all day. They are going to run some test on me tomorrow to see what that might be. For some reason I think I will have Jackson on July 15Th, but yet I'm thinking if i dnt start feeling better I'll have him by the 4th! I would be ok with a little firecracker. So anyways I'll update everybody after i see the doctor tomorrow..............KEEP THE PRAYERS COMING!


LOTS OF LOVE CANDICE BROOKE

ALMOST HERE

Hey,

Well I had a doctors appointment on Thursday and all went pretty well. Rob didn't get to make this appointment, but will be there the next time for sure! Now when i go to the doctor they hook me up to the monitors to see how much the baby is moving and if I'm having contractions. So they put me on the monitors and guess what....i was having contractions! I had no idea. Jackson was moving like crazy and i had been feeling really uncomfortable but hadn't noticed the contractions. I have them everyday so you would think i would know. So since I'm already dilated and was contracting consistently they went ahead and checked me. I was still just a 1. YAY! This means the contractions aren't dilating me. During the sonogram baby Jackson was wide awake again. He was sticking his tongue out alot! He's already alot like his daddy Rob lol....He has some fat cheeks to! I go back to the doctor on Wednesday July 1st. This is the day i get to meet the Studdards! I can't wait. They are a family that i met online that were pregnant with twin girls. One was diagnosed with CDH and the other little baby was just fine. I talk to Stephanie the mom on the phone and by text all the time. Wednesday her girls will be 2 weeks old! Kamryn is the baby girl with CDH and is doing amazing, and Brooke is at home now doing wonderful. So needles to say I'm extremely excited about meeting them. Shawn the dad does a wonderful job of keeping their blog posted! Thanks Shawn! He is also a wonderful daddy taking care of those girls. Well until next time...................


WE STILL NEED ALL THE PRAYERS WE CAN GET! iT'S GETTING SO CLOSE!

Fast update

Hello,


Well I haven't posted in a long time so i figured it was time. I have been contracting for a week now and am dilated to a 1. I was so surprised to find out that i was dilated at all... i mean it was six weeks before my real due date. They gave me a shot and my contractions have been controlled for the most part. I'm so big now and i just can't sleep, but Monday I'll have 4 weeks until Jackson gets here, so i guess that's just what comes with it. My doctor was going to keep me in Ft. Worth for the remainder of the time but i looked so good and the contractions aren't dilating me anymore that he let me come home. I just have to take it easy. I go back to the doctor Thursday. We still need all the prayers we can get so please keep praying! I am getting sooooo nervous.

Candice

My doctor appointment (6-4-09)

We went to my doctor today, and everythings just the same. No news at all! I was kind of bummed. I guess it's good that it didn't get worse though. Everything about me looks great and everything about the baby is looking great. Well he still has CDH but he's growing and sucking the heck out of his thumb. We had a 3D sonogram today and the whole time he was sucking his dang thumb. It was really cute. Oh and while he was sucking his thumb his other hand was holding on to the cord! It looked like he was just hanging from a rope with his thumb in his mouth. There was one thing that was different at this appointment, instead of being head down like he has been for 3 months now he's head up rather then at my pelvic area. The doctor says he can still turn but he's really big and I'm not sure about that. Lets pray he does because i don't want a c-section. I will post some sonogram pics as soon as i get to a scanner that works. Thank you everyone for all your prayers. They are very much needed.

We don't have to go back to the doctor for 2 weeks, so that's good for us considering we have to drive almost 3 hours to get there and 3 hours back each time. After this next appointment i go once a week. Monday i will have 6 weeks left! Yay, getting close! We still haven't done the room yet!!!!!!!!!!!!!!!!!!!!!!!!!! Yikes, what are we thinking?????! So much to do!
Lots of love everybody

To all my friends that want to know.......

So i have had alot of people asking me how long the baby would be in the hospital. Every CDH baby is different so there's really no way of knowing, but the average stay for them is 4 to 6 months. I know that's a very long time! We're praying that our baby Jackson will have a short stay. Our doctors seem to think it wont be 6 months but then they wont confirm anything. They say even if he's doing good that the feeding is a huge obstacle for these babies. So I'm praying he'll do great and wont have to many problems with this. Thanks again for all yall prayers and support.

Candice

GREAT NEWS!

We went to meet the neonatoligist Monday 5/18/09. She was awesome! She was so easy to talk to and just wanted to inform us on everything plus more. She will be the main doctor taking care of our little Jackson while he's in the NICU. Her name is doctor Whitbourn. I'm glad that Rob got to be there with me when i met her because most of these appointments he has to miss due to his work, although he has made all the important ones so far.

Dr. Whitbourn came in with our file and was very excited to read our situation. She had no idea that our CDh baby looked so good. Needles to say she was very surprised to see that the baby just had his stomach up in his chest and that my doctor has already seen the left lung developing since he met me at 20 weeks. She said that was just amazing and very very good news for us. She hasn't had a case like this in a long time. She said there are 3 cdh babies to be born there before i give birth in July, and 3 more after i give birth! I was shocked to find that out. I mean this is kind of a rare condition. Anyways out of all these babies she told us that our baby looks the best and is on the mild in of the spectrum, if there is a mild end. I mean as good as everything looks having a CDH baby is still a very serious and life thring defect.

I know i haven't talked about ECMO on my blog yet but it's a lung heart bypass machine that these babies get put on if the ventilator and everything else that the doctors are trying to do isn't enough for the baby. So ECMO is pretty much life support for these babies. I will write more about ECMO here in a bit. One out of three babies that are put on ECMO come off. This means 1 out of 3 don't survive. Not all the cdh babies get bad enough to be put on ECMO but alot do and thats why it's there. Dr. Whitbourn gave us some great news on this as well. She said by reading our babies case that she is almost positive that our baby will not go on ECMO. YAY! Then she said she wasn't God and things could change but everything looks very positive for us as of right now. I took that very well, just because she is the doctor that takes care of these babies and knows what to expect and i doubt she would tell us such good news when she sees everything she does. She also told us she would pray for us and the baby and i thought that was really neat.

So that's all the news i have for now. We just need to pray really hard that the left lung keeps developing and the stomach is the only thing that stays in the chest. My son Ty was praying for the baby last night and i tried to explain what lungs were and what they did and that we needed to pray for Jackson's left lung to keep on growing. This is what is prayer was " dear God please help my baby Jackson to be healthy and let his left lump grow sooooo big". It was really funny! Until next time.......................................

Candice

A LITTLE INFORMATION

Here's a little information for all my family and friends. As everyone knows CDH babies are given a 50% chance of survival after birth, but it's not just that easy. The 50% that do survive have to fight so hard for their lives. It is a huge struggle for these fragile little babies that are trying to survive. We are praying everyday and every night for our little Jackson to survive. We also have to remember that the journey to make it is going to be the hardest thing he will ever have to go through. I've read so much on what these babies have to go through and it is so scary. I can't imagine having to watch my baby fight for every breath, every movement,every single thing that a normal baby can just do without a fight. I Don't know how hard it's going to be watching our baby fighting for his life. The only thing i do know is he can't do it without God. These babies also endure alot of pain. To help them deal with this the doctors have them on high dosages of morphine. Alot of times they just keep them so sedated that they are constantly sleeping. The doctors do this because the little babies are wiggle worms. Lord knows mine is already a wiggle worm.

The remaining 50% that do survive could have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many of these babies have no long-lasting medical problems at all. We pray that the only way you can tell that our little boy was ever born with CDH is the scar from the hernia repair. Every CDH baby is different, there is no way to predict the outcome of any baby. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support. This is why i still worry so much. Our little Jacksons CDH isn't as bad as alot are and the doctors are so happy with him. I hear all this good news then i go back to the Internet and see that it really doesn't matter, if the child is diagnosed with CDH it is not good.

Thank you everyone for all your prayers and messages. We are anticipating the birth of our child but are so very nervous and have no idea what to expect, even with all the research i do. I'll update everyone after our next appointment on the 18th.

LEAVING ME COMMENTS

OH BY THE WAY......I HAVE HAD SO MANY PEOPLE TELL ME THAT IT WAS VERY DIFFICULT TO LEAVE A COMMENT ON HERE...SO I THINK I FIXED IT! PLEASE TRY AGAIN AND LET ME KNOW.

Update on my visit to the doctor Monday

First off i want to thank everybody that has been praying for us and our son Jackson. Thank you all for the sweet comments and messages. It really helps me knowing that we have all these people praying for us. Keep it up!

I wanted to mention some of the people i have met online since I've created my cdh blog. One family is the Reeve's family, they are pregnant with their first baby and he was diagnosed with cdh as well. They are so excited about their baby boy and can't wait to bring him home. If yall could keep them in your prayers it would mean alot to me as it would to them. I also just got a message from the studdard family. They are pregnant with Twins! One of her twins was diagnosed with cdh. They are due July 8th. Lets remember to keep them in our prayers to.

Now an update on baby beal! I went to the doctor yesterday (May 4th 09) and the doctor was very happy with what he saw. Of course i had another sonogram, and it still looks like the only thing in his chest is the stomach. That's what I've been praying for. See the less organs in the chest area the more the lungs can develop. The less they have to move during surgery the better chance of no other complications afterwards as well. The Doctor says he is growing great, and my fluids look awesome! See if the amniotic fluid is high that suggest other problems and could mean early delivery or pre term labor. Alot of these cdh pregnancies have to deal with high fluids. I am praying that my fluids stay normal and that nothing else moves up into the chest. So for all of you that are praying for us make sure and remember to pray for those 2 things specifically!

I thought i was suppose to meet the pediatric surgeon and the NICU doctor yesterday but doctor Howard said next time. I will know so much more after i talk to them. I will update some more on my thoughts tomorrow..........Baby Jackson Beal is going to make it! I believe God will save him!

This is just the start

I'm starting this blog to inform all my friends and family of what my son and us are going to be facing. First off for the people who don't know me or my family...I"m Candice and my husband is Rob Beal. I also have a son named Ty he is 3. Ty is actually from a previous marriage but Rob and I do all the caretaker and Rob loves him as his own. I was so lucky to find Rob when i did. Rob and i found out that we were expecting a baby the day after his birthday (november 27th). We were so excited and couldn't wait to tell all our friends and family, but i have lost a child before and we wanted to wait until I was three months along. Of course Rob couldn't hold out any longer and told his whole family when we were just 8 weeks along. I was nervous and didn't tell anybody until i was about 4 months. Then i thought we were pretty much in the clear. Everything was going so great and we were both so happy. Rob just kept saying he wanted to see the sonogram of the baby to make sure it was real! lol....We went in for my sonogram at 18 weeks and the doctor told us it was a boy. Rob was so excited! I was happy that he was healthy but so thought i was going to have a girl for sure this time. The doctor said the baby had all his limbs and looked really good. Rob had to travel for work that night, so i went back home alone and was just so happy that everything was ok. I got back and picked up Ty right away and told him he had a baby brother! I had never seen him act so happy about anything before in his life. He wanted to call daddy rob and tell him. So I let him and when he found out that rob had gone with me he was mad!....He thought he was the first to know! Two weeks later I became really sick. I was vomiting non stop and had horrible diarrhea. I hadn't ever been that sick before. So two days went by and i wasn't getting any better. I had no energy and couldn't even drink a sip of water. I finally went to the doctor which is over an hour away they did different test and came back and told me that they needed to admit me into the hospital. I so didn't want to go. In a couple of days i was feeling 90% better. They came in and did a sonogram the first day i was there to make sure the baby was ok. The lady told me he looked great. Rob left to get back to work thinking everything was ok. As i was getting ready to leave my doctor came in and told me that he had found a diaphragmatic hernia on the baby. He said he wasn't going to diagnose him with this until i saw a specialist. He acted like it wasn't a big deal. He just told me that after the baby was born he would need surgery to fix the hernia. I thought well that can't be to bad. i got all my stuff together and called rob. I actually forgot the name of the hernia when i called him and told him the news. I then told rob that i wanted to find out the name of this hernia so i could look it up when i got home and that i would ask the nurses. Before i got a chance to ask the nurses rob called me back and said "it's not a diaphragmatic hernia is it"...As soon as he said it i remembered and was like yes i believe that's what he said. Rob then told me how horrible it was. Rob had got on some site that told him there was only a 20% chance of our baby surviving after he was born. I hung up and just couldn't stop crying. One nurse came in there and told me not to get online and that it probably wasn't that bad. I kept asking around until finally one man told me the severity of it. On the drive back home i remembered that the baby wasn't yet diagnosed with this and it gave me a little peace. We went to the specialist at 21 weeks and found out it was a diaphragmatic hernia- aka cdh. It has been hard ever since.
It is a rare defect that occurs in approx. 1 out of every 2,500 births. This is a condition in which the diaphragm does not form properly and has a "hole", or hernia, Thur which the abdominal organs, typically the stomach, intestines, spleen, liver, and kidneys- can herniate into the chest cavity taking up vital space needed for the lungs to develop. So far our baby just has his stomach up in the chest and his heart is pushed over to the right side rather then being on his left side. Rob and I are traveling to ft. worth for treatment and delivery. We will be at Cooks Children's hospital. I have to go for a checkup once a week to make sure i don't go into labor and the baby is doing good. I am now 27 weeks and the baby and i are doing really well. At 38 weeks i will deliver. So not to much longer. I sometimes find myself wanting to stay pregnant forever just because i know he's healthy as long as he's in the womb. Don't get me wrong i hate being pregnant.....I'm not a good pregnant person. I get fat and moody and just want my due date to be here! By the way the 20% chance of survival was wrong. They believe it is more like 50%. Every little bit helps. So please keep us in your prayers. We need it now more then ever and prayer works!