UPDATE ~ 9/12/09 10:01 AM (18 Days old)
Good Morning Everyone! WE HAVE OUR BABY Rhyder WITH US TODAY! WOO HOO! He is doing GREAT! NO MORE BREATHING EPISODES since about 10PM last night. He is Peeing & Pooping and Eating!...and Sleeping...and WAKING! THANK YOU GOD!!! THANK YOU EVERYONE FOR YOUR LOVE & AWESOME PRAYERS!!!!
We spoke with our hospice nurse this morning to give her the great ... Read Morereport and I asked her if any other baby has done this before, just stopped having central apena episodes, she said NO, never. She said Rhyder definitely has his own plans and journey.
WE AGREE, ABSOLUTELY!!!! She is really getting that he really wants to be here and is helping us find a type of treatment to help keep him here and called our pediatrician for us this morning. Our pediatrician is trying to get a hold of our neonatologist from the hospital to find out what can be done for him. We read online last night that caffeine can help him. But at his point he is absolutely PERFECT! He has come back every time on his own without any intervention. God sooo has a plan for this little one. We are just surrendering to this journey and process, no matter the ups and downs of this crazy roller coaster "Rhyde" are.
WE LOVE YOU RHYDER!!! AND WE DECLARE THAT YOU ARE HEALTHY, STRONG, WHOLE & COMPLETE!!!!
WITH GREAT LOVE & APPRECIATION FOR LIFE, LOVE, BREATH, AND HEARTBEATS!!!... Read More
DWELLING IN BELIEVE!!!
Michelle & Dave...and Caeden, Dash & RHYDER!
UPDATE ~ 9/7/09 Hello Everyone ~ THANK YOU so much for walking this road with us. Our family truly has been riding on your prayers, love and support. We know that Rhyder is not only our miracle, but he is also yours.
I had a few moments to actually sit down and wanted to send you an update as to how our family and Rhyder is doing.
Well,…If you have ever been on a roller-coaster ride that pretty much sums it up. This truly has been the ride of our lives. But we are ever so grateful…Rhyder is 13 days old today! We are soooo rejoicing in our little “BIG” miracle.
I love walking around the house knowing that we have a beautiful sweet baby boy here with us, our third son, Rhyder and how he has and continues to defy the odds. WOW! I’m/we are still in awe of the miracles that continue to happen on a daily basis. He is doing great…acting like a newborn, peeing, pooping, sleeping and eating.
Right now, we are just focusing on getting his weight up and have had a nose feeding tube put in this past Friday to help supplement his feedings. Our nurse will be here on Tuesday to weigh him and we are hopeful that he is gaining weight. His last weigh in was 4.0 pounds. We will keep you posted on his next weight.
How his feedings work: He gets to suck from his bottle for 20 minutes and whatever he doesn’t eat in that 20 minutes we put into his feeding tube. For the most part, I’m (Michelle) doing all the night feedings alone because I also have to pump my breast milk. Dave helps if I need him, so I’m a little sleep deprived and really need a nap right now but will get one soon. Rhyder needs to eat a minimum of 20 cc’s at every feeding which is 2/3 of an ounce and he eats every 3 hours and naps in between. I have to keep a log of every feeding, pee-pee and poopie or any med’s given to him. We have had some issues with some congestion, probably a combination of the nose tube irritating his throat and having a small cold. But overall, he is doing amazing! He sleeps on my chest at night and is either being held or in his Amby baby bed for a nap during the day.
We do have plans on meeting with an orthopedist and having casts put on his little legs to correct his feet, but we are putting that off until he gets his weight and strength up on a consistent basis.
His brothers Caeden and Dash love him and like helping to feed him. Dash loves kissing his head and calls him “my baby”. The boys seem to be adjusting well and the more I can do to be with them and help them the better things seem to go.
I’m doing much better physically and the baby blues have seemed to pass for now…whew! But I’m still limited on what I’m supposed to do and I have had my moments of struggling with all that we are dealing with, but I think I have come to a much better space about it and am here to be Rhyder’s mom and voice and BELIEVE in him and his journey and for whatever reason we are on this journey and get to witness and participate in Rhyder’s incredible story that is still unfolding.
We are choosing to relish the moments and be grateful and continue to believe in miracles for Rhyder and for so many others. I’m so grateful to God for allowing us to walk in this beautiful, sacred, holy, yet very trying time. Total dependence on God has gone to a whole new level. Trying to balance our time with the boys and Rhyder is something that is probably the most challenging at the moment, but I know it will all settle down and we will get our rhythm. But, I’m reminded that this is not about me and Dave, I’m not the one with a diagnosis of Trisomy 18, I don’t have heart “defects” or kidneys with cysts on them, Rhyder does, he is the super-hero to me. For him to choose to live and breathe and to fight for his life, is inspiring and gives me the strength I need to fight for him and believe in him.
Dave has been fantastic and is a wonderful husband and dad to our three boys. We are continuing to listen to and watch only things that are inspiring to us, which help to keep us present and in our heart and spirit and out of our head. Dave is starting to follow up with calling on clients this week, as well as looking for more client companies but he can only do that right now if I have some hands on help here in our home, taking care of Rhyder alone is a full-time job along with being there for Caeden and Dash. So we are so grateful for the help of so many.
We have had a lot of practical help from a lot of wonderful people which has made such a big difference and impact on our world. Thank you for the Whole Foods gift cards, mowing our lawn, cleaning our home, being extra hands, giving diapers and wipes, serenading him, watching and playing with our boys, bringing food and your financial donations. LOVE NEVER FAILS!
On a different note, people who have come by our home to help or just say hi for a moment often comment on how peaceful our home is and how Rhyder has such an amazing presence about him. It really is amazing. He is very peaceful and sweet and to be in the presence of such a miracle is a real gift…but isn’t every child born into this world a real miracle. I’m not dismissing the miracles that we are experiencing and seeing with Rhyder, I’m just aware of how this is teaching us to be present in the moment and to truly value the small things in our lives…just breathing alone and having a heart beat are miracles in themselves, as are our health, our children, marriages, and loved one’s. It really puts everything into perspective as to what really is important and what we put our value in. Those are just a few things Rhyder is teaching me.
Again, THANK YOU HUGE!!!! for everything and walking this out with us. We aren’t sure where or when this road will take us or end, we are just passengers and trusting God and our journey. It is truly his strength and love that we are so desperately clinging to, as well as to one another.
With much love and appreciation as well as continuing to dwell in believe,
Michelle & Dave…Caeden, Dash and Rhyder
P.S. Oh, and if you could and would share your prayers with two other sweet babies and a family. Baby Connor who was born on 9/3 with a diagnosis of Downs Syndrome, he is beautiful, but is still in the NICU because of not being able to breathe without oxygen and poor feedings. The other sweet baby is due to arrive any day now. Her name is Sarah and she also has been diagnosed with full Trisomy 18 and has a hole in her heart. And also a very dear family, who just lost their sweet Brianna (28 months) due to complications to Trisomy 18. Brianna gave me hope for believing for Rhyder.
UPDATE ~ 9/5/09, SaturdayHello Everyone ~ We had a great day yesterday. Rhyder did well. Then at the 1AM feeding I noticed he was sounding congested and got some secretions from his nose using the bulb syringe. But it looks and feels like both Rhyder and myself (Michelle) have caught a little sinus cold. Ugh...His little nose is so congested that he wasn't able to drink from his bottle and had to take his entire 4AM feeding from the his tube, which I'm glad is there so he could take in what he needs without having to struggle. Please pray and believe that his body is strong enough to resist this cold and that his body is able to heal itself.
Dwelling in believe,
Michelle & Dave
UPDATE ~ 8/29/09, SaturdayHello Everyone ~ Wow what a day today has been! Very amazing and very emotional, especially hormonally speaking for me. I have these little crying sessions out of nowhere…this part of post-partum is new to me, didn’t have it with the other two boys. But I’m good right now in this moment, but very sore physically and not doing a thing but healing. It is hard not being able to help Caeden and Dash as much as I want to, but in due time. I know I need to heal.
Caeden our 3 ½ year old is struggling a bit, acting out and not listening well. But he loves his new baby brother. We are just being extra patient with him and loving on him making sure he gets our full attention. Dave and he are going out this afternoon for some special one-on-one time. Dash is doing great. But please keep both the boys in prayer as we make this transition.
But the great news is that we are HOME! Yeah! Dave and I got much better sleep last night. My mom is staying with us to help out, so she got up with me at night to help feed Rhyder and for me to pump my milk which has definitely arrived, Yeah! (Thanks Mom!)
And Rhyder is doing great. Still eating, pooping, peeing and sleeping lots. He slept on my chest most of the night which was wonderful. He is looking a little jaundice so we are getting him some sun exposure. And he does need to gain weight and increase his food intake, so please pray that all will happen. Right now he drinks about ½ an ounce every 3 hours and we’ve added some pre-mie weight gain formula to help him out. We should be going to see his pediatrician on Monday, hopefully.
We came home last night and the Hospice nurse Kristie was here to meet us and to make sure our little man made it home in good shape. Which he did. Hospice also delivered oxygen and emergency meds in case Rhyder needs them.
And this next week we will be visited by the Hospice doctor, the nurses, the social worker and chaplain. Oh, and we hope to get into an orthopedic who specializes in helping children with club feet, using the Ponseti Method. The sooner he gets treatment for his feet the better the results..So, we have a big week next week.
A lot of people are asking how they can help our family, which is so awesome and so welcome, and so appreciated. Some of the areas we are needing help in are: providing meals or Whole Foods gift cards to be able to go buy “to-go” meals, (We have some diet restrictions and the gift cards are a simple way to contribute a meal.) Also, we could use extra hands here at the house for a few hours a day; someone to help with light cleaning our home once a week; someone to play with Caeden and Dash; someone to help Dave out with the lawn, and a toilet that has a toy stuck in it. The MOPS (Mother’s of Pre-Schoolers) group I’m a part of is providing some meals and additional help but we would welcome more.
If you are interested, able and want to help out, our friend Kerry Beth Cottingham is helping us to coordinate all of our needs. You can contact her at 281-242-8230 or 832-875-6280. Kerry.beth@hotmail.com
And the bonus is, if you are able to help out you definitely get to meet Caeden, Dash and Rhyder. Some 3 amazing boys…and we get to hug your neck.
Regarding visitors, please be patient with us, we are trying to settle in as a family once again with a beautiful new addition, Rhyder. We definitely want for everyone who wants to meet him, to meet him, but we are just not in a space of seeing a lot of people at the moment and keeping Rhyder healthy is our main priority. We are just trying to settle into a family routine and trying to figure things out as we go. This little miracle takes a lot of work. My hope is to have a “Miracle Celebration” gathering when he is 1 month old.
So, thank you to EVERYONE for your love, support, and prayers. And thankful for your encouraging emails and phone calls. We are trying to keep up with them all, but are slow in doing so…so if you don’t hear back from us right away, please be patient…we are a bit overwhelmed right now. Dave keeps saying he is going to start a blog...so be on the lookout for that soon.
Dwelling in believe,
Michelle & Dave, Caeden, Dash & Rhyder
P.S. WE LOVE ALL THE AWESOME POSTS and SPREADING THE WORD ABOUT RHYDER's JOURNEY on FACEBOOK. WOW! We are blown away from all the people that are a part of his miracles. THANK YOU GOD! THANK YOU EVERYONE!
8/27/09 Update "Going home tomorrow"Hello EVERYONE!
WE ARE SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO EXCITED TO ANNOUNCE THAT RHYDER IS COMING HOME WITH US TOMORROW! ABSOLUTELY AMAZING! WOW GOD!!!!!!!!!!!! THANK YOU GOD!!!!!!!!!!!!!!! YIPPEEEEE!!!!!!!!!!!! HOORAY!!!!!!!!!!!!!!!!!!!!
Rhyder is doing AWESOME!!!!! & AMAZING!!!!!!!!!!!!!! He just keeps doing what babies are suppose to do…eating, peeing, pooping, sleeping, burping, fussing, and breathing. Every moment with him is such a miracle and priceless.
We are also so very grateful for everyone here at the hospital. We have had some of the BEST CARE from the nurses and doctors here at the hospital, every person that has been with us has always been the perfect person to be caring for us. WE LOVE THEM ALL! THANK YOU! THANK YOU! THANK YOU!
And to ALL of you who are ready and wanting to help us when we go home we are blown away by your love, care and support. We appreciate your help so very much and we definitely will be needing your help. I’m healing well from the c-section, but I know it is a slow process and Caeden and Dash are two very busy little men. We don’t know what all of our needs will be until we get home, but we will communicate what we will need. But, THANK YOU! We love you and are soooooo very grateful for your kindness.
Today we met with a wonderful Hospice nurse, and will be having hospice care and are blown away with all that they will be providing for us. Hospice is so not what we thought it was. Through hospice we have pediatric nurses that come to our home whenever we need it, at least once week or 5 times a week if necessary. As well as a doctor that will visit us in our home, a chaplin, a social worker, and volunteers to be extra hands a few days a week and so many other things and services. And we will still be able to see specialists as we need them, such as a cardiovascular surgeon and urologist.
There is so much more to tell, but I need to hold Rhyder. YEAH!
LOVE YOU ALL!
Dwelling in believe,
Michelle & Dave and Caeden, Dash and Rhyder
Disclaimer…I’m on Darvacet so, if this update isn’t very clear or flowing very well, sorry about that.
UPDATE ~ 8/22/09 ~ Saturday Morning
Hey Everyone!
Heard from Dr. Rowe late last night and we have an appointment in his office at 8:15 Monday, to check fluid levels and then see about getting on the C-Section schedule for that afternoon or first thing Tuesday morning.
Unless, my fluid levels increase significantly, we won’t have to have him so soon, so I’m still drinking and peeing my brains out and believing for the fluid increase. But if it hasn't, we get to meet Rhyder on Monday or Tuesday.
We did the hospital tour yesterday and glad we did it and glad to meet some of the nurses. It was a good experience. Got to answer a few of our questions, the big one being, if we do have a C-section, "how and when do I get to see Rhyder", and the nurse said that he could be with us the entire time. A “normal” baby would be gone after the mom got to see her baby for a couple of minutes and while they stitched her up. But if Rhyder is not going to NICU he could be with us the whole time and my arms would be untied to be able to touch him while Dave gets to hold him and even when they take me to recovery he could be with us. So, I’m very glad for all of that. But there is the possibility that he will be going to the NICU too. It’s just a complete moment by moment surrender process. I struggled a lot yesterday.
But today is a new day, and I am in a better space emotionally. Excitement and celebration is starting to creep back in…YEAH! After all, he is our little miracle and I can’t wait to kiss his sweet face and share him with our boys and the world.
We are in preparation and celebration mode…Making “big brother” T-shirts for the boys and a birthday cake for the family for Rhyder…getting the car seat ready and Rhyder’s clothes together. As well as getting the house clean. Sheessh…I better get off the computer and get going.
So, Love to you all and we will keep you posted as much as we can. And HUGE HUGS AND THANK YOU for all of your love, prayers and support.
Dwelling in believe,
Michelle & Dave and Caeden, Dash and Rhyder
P.S. The hospital has WiFi and my husband loves to send out updates on FB via his blackberry.
UPDATE ~ 8/21/09
Well, after a really early ultrasound appointment this morning at 6:45 a.m. we did find out the my fluid levels did go up, but not that significantly...from a 2.7 to a 3.0...but considering I went all night without drinking water, that might be a factor, so I’m still drinking and drinking and drinking oh, and peeing, and peeing…aren’t you glad to know that. :)
However, the ultrasound revealed that it appears the cord is around his neck. But he is moving well and his heart rate is good. Our mid-wife, Cathy, does a GREAT job of giving us a good perspective on the cord. A lot of babies have cords around their necks, case in point, our son, Dash, was born at home with a cord around his neck and it was not a problem. Rhyder could still turn even if the cord is around his neck as long as the cord is long enough. And just because the cord is possibly around his neck, doesn't necessarily constitute an emergency. Lots of babies have cords around their necks and are perfectly fine. We are just trusting God and our journey and the process.
We have been discussing the possibilities of delivering Rhyder even in his breech position, but with the potential risk with the cord around his neck, we don’t think we are willing to risk it. So, unless he turns on his own, we are probably looking at having C-section delivery. We are just learning to surrender more and more of our expectations.
Will keep you all posted. Love and appreciate everyone's love and support.
Dwelling in believe,
Michelle & Dave and Caeden, Dash and Rhyder
UPDATE ~ 8/19/09
Hello Everyone ~ Well, here is our latest news…
Went to our appointment today with Dr. Rowe. According to the ultrasound, Rhyder now weighs a whopping 5 lbs. 13 ozs! Which is GREAT! I’m about 36-37 weeks and he is only 3 ozs. Less than an “average” size baby. He has really gotten too big to see a lot, we could barely make out his face today…but he did wink at us. Which is so sweet.
The other news, is that my fluid levels have gotten significantly lower. Normal levels measure at a 12, 3 weeks ago mine were at a 4-5. Today they were at a 2, which the less fluid he has, the greater chance of him having a cord accident greatly increases. And the doctor is recommending that we get him out as soon as we can. Minor catch though, he is in a breech position still, with his but down. So, if he doesn’t turn, that means a C-section. Dr. Rowe would let us deliver him vaginally in a breech position, but the risks of him making it out without having heart failure are very slim. Thus, the C-section.
So, after contemplation and prayer here is our current “plan of action”. We would still like to try and increase my fluid levels until Friday morning and work on getting him to turn.
With our first son, Caeden, my fluid levels got this low with him as well and I remember I drank lots of Advocare’s rehydration drink, POS-3 and my levels increased to a 6 in about 24 hours. I realized I have not been drinking any rehydration drinks with Rhyder, only lots of water and we really want to give that a try.
So, today we went and bought a LOT of Pedia-lite, and I’m drinking a lot of it. Tomorrow we are going to do all that we can to get him to turn as well. Even doing handstands in a swimming pool, taking some homeopathy tablets, and prayer.
Then early Friday morning (6:30 a.m.), the ultrasound technician that we normally use who is FANTASTIC, Debbie Farlough, said she would do another ultrasound for us, and she is only 10 minutes from our home. I will call Dr. Rowe’s office first thing Friday morning at 8:30 a.m. to let him know where my levels are at.
If they haven’t changed, we would want to deliver Rhyder on Friday. And if he hasn’t turned, we would get him out via C-section on Friday, if that is possible.
If my levels have increased to a better and safer place, and if it’s ok with Dr. Rowe, we would see him again on Monday and check my levels again and go from there. If we and God can get the fluid up, we can wait on his arrival.
So, right now it is a wait and see scenario. This was not what I was expecting to have to decide today, I was thinking we would have another 4 more weeks to prepare. But, we are going with the flow and taking it one decision at a time…and surrendering our expectations.
I’m reminded to live in the moment, to continue to dwell in believe, and to trust our journey and Rhyder’s journey with God. We are learning to surrender to great depths.
Dave and I are taking tomorrow to pray and really listen to what God is telling us about all of this. Amazingly, we are at peace and not frantic, that is a real answer to prayer. I’ve often thought of the Miracle Baby Shower we had on Sunday, which was full of miraculous stories. It was beautiful, inspiring and life giving. So, thank you to everyone who was able to participate. And thank you to everyone who is praying for Rhyder and our family and for believing in the miraculous. This truly has been the “Rhyde” of our lives, and we so love our little man.
Dwelling in Believe,
Michelle & Dave, Caeden, Dash and Rhyder
UPDATE ~ 7/29/09
We are very grateful for Rhyder and how well he is doing! We had our regularly scheduled ultrasound this morning, Wed. July 29th…and it went well! He is getting bigger, up to 4 lbs, 4 ozs.! We saw him sucking and smiling at us. My fluid levels were a bit low, but that is my fault, I haven't been drinking enough water.
Because he is getting so big, it was hard to get a good view of his heart. But good heart beat… he is peeing well too! However, the little rascal is still in a breech position, so we will be trying all the little tricks to get him to turn. But again, the doctor talked to us about a pediatrician and he is going to talk to a couple of doctors that he knows who are great.
We will be going back in 2 weeks and are planning on delivering at Clearlake Hospital with Dr. Rowe.
So, no “new” news to share, we are still dwelling in believe that ... miracles are in process. But are very grateful for all that we have and are seeing! Please continue to dwell in believe with us for his complete healing, of his heart, kidneys, bladder, feet...and that he turns before delivery, if he doesn't turn, I would be having a C-section. Not something I really want to do.
Love, Michelle, Dave, Caeden, Dash and Rhyder.
UPDATE ~ 7/3/09
Hello everyone! THANK YOU, THANK YOU, THANK YOU! For all the prayers and support for Rhyder and our family!
Wednesday, July 1, we had another monthly scheduled ultrasound and some amazing things showed up. Our little man is doing really well.
Miracles are happening and in process! Here are some of the cool things happening or that have happened since our last ultrasound a month ago regarding his health.
The fluid around his heart appears gone!
The right valve is not as enlarged as it was before!
His heart has shifted some to the left (good news)!
His heart is not as enlarged as it appeared before!
His kidneys are not horseshoe-shaped as they appeared before, he definitely has 2 kidneys!
He is able to pee, even with a partial blockage!
My fluid levels are NORMAL! Which means he is peeing enough! This is important to his overall development.
He weights 2 lbs. 12 ozs. Which is perfect!
His overall measurements and size look good. Usually children with heart issues don’t develop well.
There was fluid in his stomach again, which means he is swallowing!
He is very active in moving around.
And…the doctor asked us about our pediatrician, which is GREAT news, because he now believes there is some possibility that Rhyder will make it to and through the birth and be here with us for a while!
Some of his current health issues that we believe are miracles in process and are asking for continued prayer are….
He currently has two holes in his heart. (VSD & ASD)
His bladder has a partial blockage and there is some urine back up in his kidneys. One kidney appears more dilated than the other.
His feet appear to be clubbed and have “rocker” or rounded bottoms.
Again, we are very grateful for all of your prayers and love!
Love, Michelle & Dave…and Caeden, Dash and Rhyder
Update: 6/2/09
Hello Everyone – Michelle here…Well, this is what I posted on my Facebook status and comments just this morning…
STATUS: “I’m trying to shake off the tears and sadness I feel this morning about Rhyder's heart. While it was a real gift to see our beautiful and sweet little man [yesterday via ultrasound], it was hard to see that his heart is struggling. They saw that his heart has 2 holes in it (VSD & ASD), and his right aorta is enlarged as is his whole heart. I'm just processing and feeling this, on my way back to the place of "possibilities of the impossible."
COMMENT: “There were also so many miracles and positives yesterday too. His kidneys are working (at least we know one is) and his bladder is draining even though it is still enlarged, he only has a partial blockage (good news - he can pee!) The malformations of his skull appear to be minor and his brain and spine look normal. He does not have a cleft lip (which is common for children with Trisomy 18) In fact, his face and profile are beautiful. His stomach has fluid in it which means he is swallowing (another great sign). His feet are clubbed and appear to look rounded or what they call "rocker" bottoms, but that can be treated without surgery. Overall, it was a good day and we really loved meeting Dr. Rowe and his staff. Dr. Rowe even prayed with us before we left and Rhyder was kicking the whole time he was praying. It was amazing. I'm just trying to get back to the place of "believe" not focusing on what my eyes see and what the "results" of a test show, but “what God sees.”
COMMENT: “Please keep Rhyder's heart in your prayers. I know ALL things are possible! Even the complete healing of his heart.”
And since I made the above, post and comments, …I’m doing better. I do better when I process things out loud and get them out of my head, where all these random thoughts just ping back and forth inside. And thank you to all of you on Facebook this morning for your wonderful comments, and just being with me in my pain. What a gift you all are.
Now…for the rest of the story, which has yet to be written, but what I know today. Is that Rhyder is a great gift to us and teaching us so much on this journey. He truly is proving to be “The Rhyde” of our life. I enjoy every kick and movement that he gives me, and I/we are enjoying and loving our boys, Caeden and Dash and each other to the fullest.
We had a great meeting with Dr. Rowe yesterday. It was worth the 35-40 minute drive to his office. He is truly as wonderful as all the people who recommended him said he was. He was caring, kind, loving, supportive, real, and open, and a great doctor. We only will be seeing him on a monthly basis for an ultrasound, while my midwife, Cathy Rude will continue to do my regular appointments. Right now, we are planning to deliver in Clearlake Hospital, where Dr. Rowe works out of.
Please continue to keep Rhyder in your prayers and please come and “dwell in believe” with us. We also, would love to be in believe for you and the miracles you seek in your life as well. So, if you have a need, please let us know, so we can stand with you for your real miracles. We are experiencing them, on a daily basis. Hopefully, soon I will send out a post/email of all the miracles happening around and to us. We are just beginning to write them down.
Love to you all!
Living in the moment and dwelling in believe,
Michelle Anderson
P.S. A HUGE thank you to Alicia, who literally at the last minute, watched our boys for us for 4.5 hours while we went to our appointment. My mom woke up yesterday morning with a stomach virus and was unable to watch them for us. Thank you Alicia, we really appreciate your help.
Update: 5/19/09
Hello everyone – We just wanted to say and send out a really big THANK YOU for all the love, support and prayers you have showered us with these past few weeks. We would hug all of you if we could, you all mean so much to us, and are so appreciative of your love. It has been beautiful and amazing to receive. (This update is being written by both of us, so if it seems a little disjointed, sorry.)
We wanted to update you all “As for "How we are doing?"… Now that the shock is wearing off regarding the doctors “diagnosis” that our little (almost 23 week old unborn son), Rhyder “has Trisomy 18”,…we are intentionally focusing on what God sees and not what the doctors see. Since, our latest update we have been taking time for some very important heart/soul searching (along with many conversations regarding him)…and after extremely varying emotional moments over the past 4 weeks, we have come to a rather specific viewpoint, attitude and prayerful approach to our little man Rhyder and our family’s journey – in the moment.
1) We are NOT labeling him a “Trisomy 18 Baby”…but rather distinctively “Rhyder – who the doctors have “diagnosed” with Trisomy 18”. The reason for this is that as we have looked at soooooo many stories on the internet of precious children who had this diagnosis…but NONE of them are HIS STORY. His story has not been written yet…thus we stopped watching YouTube clips or reading stories about other children’s “story” (which usually left us predicting/guessing what ours would be). We wanted him to have the FULL opportunity to be anything He chooses to be and live as long as he and God say he would – vs. all the stories out there and their predictions.
2) When we “visit” the place of fear, thinking about funerals, loss or how we would tell our other two boys if/when their little brother was no longer with us – we would RETURN quickly to “HOME”: a place of belief, faith, health, and envisioning all the possibilities of LOVE & MIRACLES – which is normal in the realm that GOD IS!
3) We have come into a fuller awareness/understanding that Rhyder – as well as THE REST OF US – come to the earth to teach lessons with our very lives, and it is clear that some of them are being revealed to us already. For starters: (a) Trust, (b) Surrender, (c) The power of LOVE vs. FEAR, (d) Being present (in the moment) vs. in the past or the future (where fear usually pulls us to), (e) How that, if we create our own reality, we must take ownership of that reality in order to change it/us, (f) Resting in the absolute perfection of God (in all things) – there are no mistakes and God is in total control, (g) Celebration of the sacredness of each moment and every person in our lives, and (h) Letting Go of expectations….just to name a few.
We are being hopeful, trusting God and our journey, and leaving the results in God's hands. Rhyder's story hasn't been written yet, he may live a few moments he may live 100 years, we don't know, but we are not looking into the future but living in the moment.
We focus on things that truly inspire us and what is directly in front of us for that moment and day. That's all any of us are really given anyway, we are all only given today. We are full of hope and believe that miracles are available for us and for him. Regardless, he is already a miracle to us and a huge gift and we are glad and grateful we are his parents.
Midwife Appointment: And I, Michelle, am really enjoying my pregnancy again and loving every little kick and movement he makes, which have been a lot! I went to the midwife for a regular check up last Wednesday and he has a good strong heart beat and good heart variations, and he is definitely growing, because my fundus measurement has caught up to what it is suppose to be, I was measuring smaller.
Documenting our journey: While having a very intense and emotional conversation one day in our kitchen, Dave and I both felt led that we should be recording and documenting our journey with Rhyder. So we have started a daily video journal for ourselves, and maybe someday down the road offer it to other families as a resource of how we walked out this journey. Who knows, we just know for us it will be therapeutic to tell our story out loud as it occurs. Our story hasn’t been played out yet, anything is possible, and we are believing for a "Happy" ending/beginning.
What we are doing for Rhyder: We will be meeting Dr. Thomas Rowe, a Perinatologist in Clearlake that has come strongly recommended by 4 different women in 1 day, in June and looking forward to meeting him. I (Michelle) am also seeing a Naturopath for some acupressure treatments that help me and Rhyder and taking some amazing supplements that are helping his kidneys and heart. Caeden and Dash are doing great and they kiss my belly on a regular basis and say “Hi, Baby Rhyder”, “get better” and “I love you.” I know their sweet kisses are so healing. They love to put band-aids on my belly with words of life written on them.
Ministry/Life Work Update: We also wanted to let you know, that during all of this, the one company, where, I (Dave) served over the past year as “Corporate Care & Family Life Coach”, has officially laid me off along with about half of their 240+ employees. I told the owner that I was there to love and support the people – paid or not… so I continue to serve them on a weekly basis as I trust God that He will provide through other measures. This company was the main stay of our income. So, we are also trusting that God is our provider in the area of finances, which is not a new journey to us at all and looking and listening to Him for our next step. Our finances are beginning to “dry up” but God has always met our needs, so we are not panicking, we are waiting for new doors to open. Dave is looking for new company clients as well as looking at doing some advanced motorcycle training to some motorcycle clubs. He did a training a couple of weeks ago in Louisiana and it was a blessing to us, personally and financially.
People have asked how they can help. Well right now, (1) the biggest one is pray and believe and keep your encouraging words coming. We know and believe prayer heals and can move mountains. (2) Please call or email if you just want to say hi, we love talking with people, and don’t worry about “what should I say”. Just saying “Hi” or “just checking in” is perfect with us. (3) If you know of any companies or individuals that could use a Care Coach/Family Life Coach, please send them our way, or if you know of any motorcycle clubs that would like some advanced training at a very affordable rate, also, please send them our way.
So, that’s the latest. Again, we thank you all for your love and support. Soon, we will be opening a blogger page, where we will post our RAW moment by moment emotional, thoughts and spiritual perspectives… so you can follow that if you wish as well.
Love to you and your beautiful families!
Living and loving in the moment,
Dave, Michelle, Caeden, Dash and baby Rhyder
14007 Kathi Lynn Lane
Sugar Land, TX 77478
281-494-2285 Home
832-233-2665 Dave’s Cell
713-204-8667 Michelle’s Cell
www.FreedomLifeConsulting.com
www.MyCorporateChaplain.com
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