Weston's CDH Journey

How life changes

2011-05-18T13:33:00.000-07:00

Life changes so quickly and you just have to sit back and watch. Weston amazes me everyday the things he accomplishes and the challenges he over comes. Weston has caught up so quickly with where his peers are it amazes me and he speaks so clearly. It will be a year in June since he had OT and so he has been doing all of this on his own and what I mean by this is that he is growing like a little boy. He is my adventure, he laughs in the face of danger and challenges it. Which of course scares his mommy to death, I just want to wrap him in a bubble. He loves music and loves to sing. I also loves seeing his letter 'W' for Weston, everywhere we see the letter 'W' he lets us know it.
Weston also loves being a big brother to his new little brother Brenton. He is fascinated with Brenton's eyes and loves to poke them.
I cannot believe that Weston will be 3 in July, this is going by way to fast for me, but I praise God every day that we get to celebrate these little milestones and big birthdays :)

Changes all around

2010-12-10T11:52:00.001-08:00

Wow, time is just flying by! Almost Christmas, almost a new year and almost time for baby number 3 to make their appearance.
We are having exciting times here, home school every morning, Quinton and Weston are soaking up so much information. Quinton is begging for school if I don't get school going by 9AM. I know the favorite activity is painting.
Weston vocabulary is getting bigger everyday repeating everything we say, it is amazing me how much he is saying. He really loves music and does best learning by song, which is amazing since that is how I do a lot of my memorization. Weston loves watching Super Why and Word World and playing with his Thomas the train.
I am doing good, 28 weeks and counting. Baby is very active and always letting me know when I've done too much. We can not wait to find out if its a girl or boy, of course waiting till they are born. Our plan is to do a VBAC, so far so good, whatever the Lord has planned as long as both me and baby are safe.
I pray you all have a very merry Christmas and a blessed New Year!!

Crazy fun times

2010-08-25T06:05:00.000-07:00

Weston had a hearing screening test yesterday and did great! He passed and didn't have fluid on his ears yeah. We don't have to go back for 6 months we have been going every 3 just to make sure he didn't suffer any hearing loss from being on ECMO. So we go back in February.

We are having many changes in the Rogers' house with two growing boys. Getting our house repaired from a hail storm that passed through Oklahoma in May. We are still waiting to get our windows replaced we had two broken out, which hopefully we'll have the new windows by the end of September beginning of October, yeah in Fall, could have used them during the summer months but oh well.

We are also getting ready for another big adjustment in our house, we are expecting a baby the end of February. This will be our third and we are so excited. I am secretly hoping for a girl but a healthy baby will be the biggest blessing. We go and see the doctor today for my 13/14 week check up. We go and see the high risk doctor the end of September for our ultrasound just to make sure everything is ok. We are excited about going and seeing him and for him to meet Weston.

Another big change in our house is that I am going to start homeschooling Quinton(4) the beginning of September pre-k. I am really looking forward to teaching him and I know Weston will learn a lot too.

I think that's it for now and the on going changes at the Rogers' crazy house :)

Where has the time gone

2010-08-04T07:25:00.000-07:00

Wow, I am horrible on updating Weston's blog and letting everyone know how we are doing. We are doing great!! I can't believe that we celebrated Weston's 2nd birthday almost a month ago. We learned that you don't give him cards first because we never get to the presents. We gave him a Mickey Mouse clubhouse musical card and he did not want to put it down.
We had a great time in Colorado/New Mexico with our families. We learned something every important that Weston starts struggling with his O2 stats at about 8,000ft, he drops down into the low 80's. We are so thankful that our parents had a friend close by that used oxygen so she had a portable pulse ox with her so we could check his stating. Something I need to purchase in the future whenever we take trips out of our elevation, just to monitor Weston and it was something I hadn't even thought of. So just an FYI to all other CDH families out there that look at Weston's story.
When Weston turned 2 he hit the terrible 2's. He has been so rebellious. I mean he was before but now even more so, so stubborn. At the beginning of July we moved Weston into his toddler bed. He is really doing good, there are times he comes into our room and I take him right back to his bed and falls back to sleep.
Two weeks ago Weston got released from therapy so we are specialist and thearpist free. It is so exciting, if you would have asked last year if this is where we would be I would have not imagined it. Of course Weston was still on his feeding tube and our GI doctor was telling us he needed a G-tube I praise God that we knew Weston could do it and he has. Slow and steady.
We are so blessed. There are still nights when I lay him down to sleep I just sit there for a minute listening to him breath, it is such a wonderful sound.

Emotional evening at the NICU

2010-06-07T13:38:00.000-07:00

Last night we went and visited some of Weston's evening NICU nurses. It was so great to see them and for them to see Weston walking and saying "hi".
As we drove to the hospital I started to get emotional and I told Timothy I didn't understand why. We have been up to the hospital so many times since Weston was discharged and it has never phased me. I think what it boils down to is that we were going at night when we would usually go up and see Weston. A flood of memories were coming back. It amazed me how your mind gets triggered by certain actions and it takes you back to a certain time.
It was so emotional to see Gretchen, Ricki and Carla all of whom took care of Weston while he was on ECMO and for a majority of his stay. Gretchen was there when we first where able to give Weston a bottle. Carla got Weston moved out of the ECMO room when he was more stable. Ricki was always a big support in both rooms. They were all such a big part of Weston's stay at Children's. We were all crying. They all mentioned did we know how blessed we were, I told them yes. They were so glad that we came up to visit so they could see how well Weston is doing. God is so good and continues to bless Weston with great health and a very healthy attitude.
On Thursday we go for his last developmental evaluation. The hospital follows all babies who were in the NICU until they are two. I'll post after his appointment to let everyone know how he is doing.
Weston is doing great and is picking up more words and saying more. His main word right now isWall-e, we watched that movie last week and he caught on to Wall-e and Eve. The other day we had the dogs inside to cool down and he walked over to the gate and looked over at the dogs and said " Hi doggie" we were laughing so hard. He loves singing Jesus loves me and bible bible God's best book.
We are planning a trip the end of this month to New Mexico and Colorado we are going to the Red River encampment we are so excited.

Busy Boys

2010-05-25T14:10:00.000-07:00

Time has sure gotten away from me especially since I last posted. Weston is growing by leaps and bounds and is into everything and is so healthy and amazing just to watch him walk around everywhere. He thinks everyone should know him and knows how special he is.
This week has been busy and it is only Tuesday. On Monday we had Weston's hearing screening just to make sure he doesn't have any hearing loss especially since he was on ECMO it is a precaution we take until he is three. He has fluid in both ears, but passed his tested and the lady that did his hearing test was surprised that he did so well for having fluid on his ears. I was so proud of Weston, he sits so patiently waiting for the sounds, there were a few times that he was ready to get down and leave. After his hearing test we went to the NICU to see a couple of Weston's nurses when we were there, which has almost been two years, wow how time is flying. Both Darlene and Blake came out to see Weston. Timothy was holding Weston and when Darlene saw us she thought Timothy was holding Quinton, she was so surprised that it was Weston. It was so great to see these two very special people and for them to see how well Weston is doing.
Today we had another fun adventure, we went on a field trip with a group of our friends to PetSmart. We got to see and hold, a turtle, snake, kittens, lizard, rats(hairless and haired) and see a bird. It was so fun to see the boys different reactions to the different animals. Quinton is more leery of certain animals but more vocal. Weston touched all the animals and the only thing he didn't like was when they put the rat on his shoulder, he started crying. It was so much fun, to experience all these animals.

Hairless rat on Weston's shirt. Quinton with a rat on his shoulder.

Growing up fast

2010-03-29T06:31:00.000-07:00

Our God is an awesome God! You cannot say much else when you see His power in your life.

Weston is doing amazing and its the little things that I always catch myself watching with him. For instance I love his laugh it warms my heart, I know what mother doesn't feel that way :)

Its hard for me to believe that Weston is going to be 21 months next Friday. Time is going by so fast! Weston is so independent and doesn't mind showing it especially if he doesn't get his way. He is a thinker, you can see the gears working when you ask him a question. He is a big helper he loves to sweep and vacuum. His newest trick is pushing buttons on and off. He thinks it is the funnest game ever. Last Sunday he walked to Bible class all by himself with his bible in hand.

Last year we were just getting out of the hospital for the third time. Weston had caught RSV and the RSV was turning into pneumonia, as a parent you try to be strong but with the ER doctor is calling for the crash cart that is when you break. I was calling everyone we knew as we sat in the waiting room while the doctors worked on Weston. Praise God He prevailed and Weston was stabilized. He had a hospital stay of 5 days. As I look back I praise God for our experiences even though they were bad it really makes you appreciate what you have. I praise God that we have been hospital free for a year!!(knock on wood) We have had to give Weston breathing treatments but other than that he has been a healthy boy. He isn't in any isolation which is nice.

Weston received his last RSV shot for the season. I thank God and his doctor that Weston had this extra protection for one more year to allow his lungs to get stronger. Of course Weston is excited he doesn't have to have a nurse come out to the house. He knows when they pull out the scale to weigh him what is happening it is so sad.

One thing about Weston that amazes me he loves lifting up his shirt which reveals his scar, I know he is just being silly but seeing it everyday and a smiling face above it always makes me realize how blessed we are.

Thank you all for following Weston's progress we are so blessed that so many people care and are praying for Weston's continued health. Don't forget to count your blessings and name them one by one because you'll be so amazed at what you have and what God has provided.

Happy 19 months!

2010-02-10T14:23:00.000-08:00

Happy 19 months Weston!!

Look how far you have come my amazing little man, you have accomplished so much. This time last year you were on oxygen, NG feeding tube and pretty much being propped up by mommy or daddy.
This year you are on room air have been for 10 months, eating solids and pretty much everything in front of you for 7 months and walking every where for 4 months. Wow thank you Lord.
You continue to amaze me, you are km free even though we need to make a trip to the hospital just to see everyone. Your pediatrician's office loves you even though they probably wish we would go for well baby visits they know you.
You are start to get down a little run and trying to keep up with Quinton where ever he goes. You are getting very independent and when brother doesn't listen to you fuss at him you go to bite him to get his attention. You love to break free after church service so you can go and run up to the front of the auditorium and crawl onto the stage. You are an extreme momma's boy and do not like to let mommy out of your sight. You love looking at books and especially like the Tag reader that reads the story to you. You are getting another bottom tooth in so now you have 12 teeth. You love to go outside and play and love to bring me anybodies shoes. You say "hi" and wave. You are now sleeping through the night have been for almost a week.
You are an inspiration to us and we love you so much. You are brilliant and are so full of lose and to have all the attention on you.

Thank you Lord for 19 wonderful months of ups and downs, bumps and bruises it means we're growing.

So exciting!!

2010-02-08T07:09:00.000-08:00

We are celebrating at the Rogers house and espeically Mommy. Weston has slept through the night for five nights in a row!! Weston had been waking up about four to five times a night and I was getting up with him and rocking him back to sleep which usually took about five minutes or more. So this has been great, last Monday night I let him start fussing for 15 minutes and then would go and comfort him it only took him two nights before he caught on and he has enjoyed sleeping in his crib and sleeping through the night.

A week and a half ago Weston was having some congestion and was not wanting to sleep laying down so I took him to the doctor and he didn't have an ear infection and sounded good in his lungs so we went home and thought he was on the upwards slide of everything. Well the following day he was acting worst so I took him back in to the doctor's and he still sounded clear but his doctor wanted to take a chest x-ray just to make sure and sure enough Weston had walking pneumonia. His doctor put him on a antibiotic just to help him get over the cold faster since walking pneumonia is a virus and you really have to just let it take its course but Weston is doing great.

We are so happy that Weston got over this hurdle. His appetite slowed down quite a bit but this was our first big sickness without his NG tube so I think he did great and so did we. We are continually amazed at how great Weston is doing and we praise God everyday for our little trooper.

God Sent to Me an Angel

2010-01-15T10:29:00.000-08:00

This was posted in the CHERUBS newsletter this month and I wanted to share this with all my friends and family. God is so good and amazing.

God Sent to Me an Angel - By Paul Dammon (I found this poem on a CDH blog this past week)

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Slowing down services

2010-01-07T11:08:00.001-08:00

I am so excited to write this post. Yesterday while meeting with Weston's therapist we decided that we should start cutting back on Weston's OT sessions from once a week which we have had since November last year and go to once a month. This is so exciting and an answer to prayers that Weston is catching up developmentally right where he needs to be. We wrote out a few goals for him they were speech and sleeping through the night :) I know great goals for any kid to have.

We know that it is the prayers and God that have helped our son get to were he is now and we praise God every day for our boy and how normal he is.

Please keep the CDH community in your prayers as new Cherubs and expectant parents are given this diagnoses every day. We need to see more of these kids survive and thrive.

Already 2010

2010-01-05T17:06:00.000-08:00

We pray everyone has had a great holiday season and are having a great new year so far.

We are doing great here at the Rogers house. We had a wonderful Christmas season, my parents came down for a week and enjoyed the boys and the boys loved having Grandma and Papa here. We got snow on Christmas eve which was great having a white Christmas. We went sledding in our front yard and had a blast, Weston enjoyed it but wasn't sure about the sudden stop at the end, getting stopped by mommy before he went into the street. We also went to Chucky Cheese while Grandma and Papa were here, Weston loved showing them all the rides he liked to do.

Over the holiday season I found out that there was another baby born with CDH at Children's and his name was Westyn too. I have been corresponding with his Nana and he is dong great. He was born the beginning of December he didn't require ECMO and was on oxygen and IV for a month. He has an NG tube but is taking great from the bottle and the great thing is he is going home today! I am so excited for his family and that he is doing so well. It is amazing how different all these kids are. I know they are all tough.

Now on to what everyone wants to know, how is Weston doing. He is doing good. He has had 3 rounds of synigsis shots this season and is doing good so far. We still battle the occasional ear infection but I know he is doing so much better not having all the drainage caused by the NG tube that he had last year. We haven't put him in isolation like we were in last year, but we are still taking all the precautions of washing hands and staying away from anyone who is sick. Weston is walking everywhere and loves chasing Quinton everywhere. He is starting to shake his head yes and no when we ask him a question. He is also my temper thrower, he has a very independent bone in his body and he continues to show it everyday. He loves anything that Quinton is playing with and that usually starts a fight.

Tomorrow during his therapy we are doing his evaluation and goals and his therapist told me the end of last year not to be surprised if they cut back services or if he doesn't qualify anymore. This is so exciting to think that Weston is developmentally right where he needs to be. What a long journey we have been on.

We continue to get questions on Weston's health and if he is 'good'. Weston is good but we always have to worry about reherniation (which can happen anytime and out of the blue) and lung issues such as pneumonia and RSV(his lungs are growing but they are still compromised). Weston is an amazing little boy and we praise God everyday and we know that prayers are what made our journey easier.

We pray you all have a blessed, healthy and happy 2010!

Where has 2009 gone?

2009-12-03T13:53:00.000-08:00

I cannot believe that it is already December and that the Christmas tree is up and Christmas shopping for the boys is done.
When I think about last year Weston being in the hospital three days before Thanksgiving and being put on oxygen because of the pneumonia it amazes me and I praise God where Weston is now.
Weston had his second synagsis shot of RSV season on Sunday right before we head for evening services. He is such a trooper. It always takes me by surprise how much synagsis he gets in each leg I feel so sorry for him. He has a runny nose and a cough, but we are thinking it is allergy and maybe a little bit of a cold. I am staying on top of it and he sounds clear and I am keeping his doctor updated.
Weston is teething finally after 5 months of no new teeth he has to be difficult and have three teeth breaking through one on top and two on the bottom.
Weston enjoys walking more than crawling. He is now getting more confident and trying to increase his speed, it is only at those times that he is chasing after brother and trips over his own feet, its the face first that always hurt the most.

Walking and Growing

2009-11-18T11:57:00.000-08:00

Well last Thursday Weston decided that walking was better than crawling. It is amazing to see him walking everywhere. There are still a couple of times that I catch him crawling but he prefers to walk now. It makes him seem so grown up now. It is amazing to look back at where we were just a couple months ago and to see how fast he has developed and changed. I loves following his big brother Quinton everywhere and driving Quinton nuts. He loves eating everything in site which is so amazing just by itself. I praise God everyday that my miracle continues to keep amazing us with each step he takes.

Weston loves playing outside and he especially loves riding in his little car, he thinks it is the greatest thing to open and close the car door and honk the horn.

Weston's been home a year!!

2009-10-12T07:28:00.000-07:00

Make an on-line slide show at www.OneTrueMedia.com

A year ago we were bring Weston home from the hospital. I never thought anything would be harder than having to leave your baby in the hospital for three months but coming home there would be more challenges.
Learning how to replace an NG tube, waking up so many times at night to give meds and to give him his feed. After a month of being home Weston catching pneumonia and being in the hospital three days before Thanksgiving. Coming home on oxygen and now getting used to having an oxygen tank in the hallway and oxygen tubing all around the house.
Watching how he is breathing if we need to turn up or down his oxygen watching his pulse ox monitor to see what he is stating.
Doing great until March when he caught RSV which was turning into puenmonia, having a five day hospital stay, I'll never forget the ER doctor calling for a crash cart, words a parent should never hear. Coming home learning how to do breathing treatments and to continue to watch his breaths per minute.
Over coming oral aversion and learning how to eat everything in site. Coming off oxygen after being on it for 5 months after he caught pneumonia the first time in November. Coming off his NG tube after 13 months and having no set backs.
I would not trade any of these experiences. Our faith in God has grown. We did not know if our baby would come home and then he did. We were worried about his catching a cold or RSV and guess what he did, but he/we have over come with God. All through God, without Him we would not be where we are today celebrating Weston being home a year!! Praise God.
Thank you all for all your love, support and prayers through this part of Weston's life.
He continues to amaze us he is cruising around everywhere, he has taken a couple steps by himself. He is becoming more independent and he has the greatest personality, he is a jokester and loves to laugh and smile. He gets in fights with his brother and gets jealous. He eats everything, he loves green beans and hot dogs and chicken nuggets. He is drinking from a sippy cup and loves water. He loves sliding down slides and playing with cars.
We are so truly blessed, I cannot wait to see what we have in store for this year.

Jenny

No more Specialists

2009-10-07T06:41:00.000-07:00

We are so excited that we have no more specialist. Weston's GI doctor released him from care two weeks ago and we are praising God. But then there seems to be something missing this time last year Weston was still in the NICU, we were waiting to see if he would take anything from the bottle, wondering if the doctors would let us take Weston home on a NG tube. I am so glad that we only have our pediatrician now. Then the worry starts, worrying about flu and RSV season, you forget about sickness when it has been so nice and warm through out the summer months. I know Weston is strong having had RSV and pneumonia last year and once this year. But still scary. We are going to start limiting visits to the store and mainly just take him to church and try and limit his exposure to things. I know he is stronger this year, I know his little lung is growing and that he is our miracle and he continues to amaze me everyday. I asked my husband last night if I should call him pediatrician just to talk and ask if he was would be worried about Weston this year, but as we talked I started to realize Weston hasn't followed any textbook if he had, he would not be here today. Weston has set his own medical path and I praise God everyday that He is in control.

I love to eat

2009-09-16T19:26:00.001-07:00

Weston continues to amaze his daddy, his therapist and myself. We think back to a month ago and he was not eating really anything by mouth a littler here a little there and now he is eating everything by mouth. It is so exciting. I have started giving him bigger bites and he tolerates them all so well, sometimes it is hard to remember what a struggle it was just a couple months ago at his first birthday. His days fluctuate, if he takes a lot of fluids he doesn't eat a lot of solids and then the opposite the next day a ton of solids and less fluids. He loves his vegetables he is not quite sure about fruit, but we are working on it.
Weston's OT is so excited that he is doing so great, he shows no oral aversion what so ever, he is manipulating his food really good moving his tongue just like he should and is managing his food. Weston is also trying to walk every where and he gets into everything.
We have our appointment with Weston's GI doctor on Tuesday and I can't wait to see if he has gained any weight and I pray that we are discharged from his care. Weston has taken huge steps this past month and we know that is it all God and He has blessed us so richly with Weston making all these changes.

Where am I?

2009-09-03T13:16:00.001-07:00

This morning Weston had his Bayley developmental study and physical exam by one the of the neoatologist that had him in the NICU.
The therapist who did Weston's study was so nice and it was so neat to watch Weston do the different tasks set in front of him. I was with him for his cognitive test and Timothy was with him for his motor and language tests(one of us had to stay with Quinton)
The results from his test and they are testing him as a 13 months old since he was born at 37 weeks and that is the lower part of the premature scale.

For Cognitive which is how he explores new toys, solves problems and new experiences he got --16 months
For Receptive Communication which is identifying pictures, following simple directions and preform social routines he got --10 months
For Expressive Communication which is non-verbal expression such as smiling, babbling and laughing he got --13 months
For Fine Motor which is assessing muscle control like following objects with their eyes, grasping an object, and bring hand to mouth he got --13 months
For Gross Motor which is measuring his ability to crawl, make stepping motions, support their own weight and stand he got --10 months.
Weston's physical exam went really good, the doctor said he looked good especially for being as ill as he was.

Timothy and I are praising God for these results, the doctor said that Weston's verbal would pick up since he is advanced cognitively. We weren't sure how he would score on his motor skills but his therapist has been watching his gross motor and his muscle tone in his legs. We are so blessed. Another step in us knowing that Weston is getting healthier.
I am still worried about this upcoming winter and the unexpected we had two hospital visits and one we almost lost him. We continue to pray daily that God continues to heal Weston and that his lungs continue to grow and get stronger.

Thank you all for your prayers we know they work miracles.

Jenny

Oh the Places You'll go

2009-08-28T10:14:00.000-07:00

Those are the words I keep telling Weston, especially when he is crawling away from me at top speed. He is everywhere and in everything right along with his big brother. I never thought this day would come, when you are used to your baby just being in one place it takes some getting used to, but it is so exciting at the same time, him examining everything for the first time it is so amazing.
Weston is doing good with his feeding, he has some bad allergies and they have set us back a little this week with all the snot draining down his throat but he is doing great. We are working back up to 18-20 oz of milk a day not including all the table food he is eating. It is so exciting. On Thursday we go to the NICU clinic for them to see how Weston is developing which is really exciting he is doing great and I can't wait to show them :)

Feeding is going GREAT

2009-08-17T11:00:00.000-07:00

I wanted to let everyone who is following Weston's eating adventure that he is doing great. We haven't had a weight check so I can't say for sure he is gaining, he feels like he is :) Anyways, he is doing great on taking more and more food. He has eaten 1 chicken nugget, 2 pieces of ham and he is getting better and better at more solid food in his mouth. He is up to taking 18 oz of milk a day, which is awesome, we are so proud of him. He has come so far in two weeks, it is amazing and we know that is all because of God that he is doing so good.
Weston is also crawling everywhere and getting into everything. He is also pulling himself up on everything and we are working with his therapist to start walking, which is so exciting and scary all at the same time. My baby is growing up into a toddler like he should but it is happening so fast, usually you get a couple months to move from stage to stage not weeks. But I am so excited that we have come this far and that Weston continues to amaze us. We are so blessed.

Jenny

Eating is going great

2009-08-10T15:49:00.000-07:00

Weston is really enjoying eating by mouth. He is getting better at taking more by bottle the most he has taken is 17 oz, which is awesome! Plus those 17 oz have a caloric intake of 41.1 per ounce so that helps. He is doing really good. He is on antibiotics for his ear infection and I can tell he is feeling better everyday plus the fact that he is chasing Quinton around everywhere. Now that he has learned to crawl that is no turning back, he shots down the hallway and is off doing his own thing. It is so exciting to watch him go and for him to take things in for the first time, I love watching the world through my children eyes. We are still working on taking more by spoon which is a work in progress since he is taking so much by bottle but hey we are off the NG tube he is doing everything on his own and it is the awesome power of God that we are seeing. We are so blessed. Life is GREAT!

Baby Beal

2009-08-08T18:48:00.000-07:00

Baby Jackson lost his fight with CDH and earned his wings this afternoon. Please pray for his parents Rob and Candice as they have to deal with no parent ever should. My heart is breaking for them.

Prayers for Beal family

2009-08-08T14:59:00.000-07:00

Please keep the Beal family in your prayers. This is Jackson's 9th day on ECMO and the doctors have told his parents that his body is getting tired. It makes me so made that CDH might be taking another precious baby. Please pray for this family during this time and the minutes to come.

http://beal-jackson.blogspot.com/2009/08/prayers-needed-for-jackson-and-family.html

Jenny

Can you hear me now?

2009-08-06T14:36:00.000-07:00

Well we always know when Weston isn't feeling good, it is when he doesn't sleep laying flat and wakes up at night. Well come to found out this morning that Weston has another ear infection. Our poor baby, we can't seem to shake them.
He has been doing great on oral feeds, taking 16 oz a day and he was 20lbs and 5 oz at the doctor's office today so that is really exciting. So means he is gaining weight.which is really exciting. Only problem that since he has the ear infection he doesn't want to eat like he should, guess we'll give him a day and see what tomorrow holds. The other fun part is trying to give him medicines since we are used to putting them down his NG tube, he is having a fun time spitting them back out at us.

No G-tube for me!

2009-08-04T10:43:00.000-07:00

We had a great visit yesterday with Dr. Mantor and we are so blessed to have him caring for Weston. God has blessed us so richly with such talented physicians.

We saw Dr. Mantor yesterday to have a consult on a G-tube and to get his thoughts and what the risks and benefits would be for Weston. He explained what he would have to do and work with. With 'normal' kids it is a complicated surgery but is easily done. With Weston it is a different story and Dr. Mantor told us that if Weston wasn't progressing with his feeds that he might of told us differently but he is taking more by mouth. So Dr. Mantor told us that he was going to call Dr. G and tell him that is 4 against 1. We are praising God that Dr. Mantor felt that wasn't the right decision for Weston. Dr. Mantor also looked a recent x-ray of Weston's chest and said that his chest looks great, no re-herniation and that he is asymmetrical and that his left lung is filling in really good. Praise God!
Update on Weston's eating he is doing good. On Sunday morning he pulled out his tube, so we decided not to put it back in to see what he could do. I will not lie it has been hard on me worrying if he is getting enough calories. But we are journaling everything and we can see how far from what he should be getting he is. On Sunday he only took 324 calories which he is supposed to get 900 calories well yesterday he took 547 calories so we are so excited. It amazed me yesterday while we were at Wal-Mart trying to find high calorie foods that there aren't many but we found some cookies, so maybe he'll like those. Weston is also wanting to feed himself and he is doing really good.
Weston is crawling everywhere, he loves going into the kitchen and pull all of the magnets off the fridge and play with the flyswater. It is amazing to see his progress.
We are so truly blessed, yesterday we also went and see two of his nurses in the NICU and one of them had told me that had a couple of CDH babies in July and neither of them had to go on ECMO praise God.
Thank you all for your continued prayers, Weston continues to grow and get stronger every day.

Jenny

Happy Birthday Weston!!!

2009-07-10T06:48:00.001-07:00

Happy 1st Birthday Weston!!!

Wow we have made it all of our family, friends and prayer warriors. Look at where we were a year ago, many of you didn't even know us or know the trials that we would be facing this year and many of you had probably never heard of CDH and didn't know how grim the outcome really was supposed to be. Weston has shown the medical community that with God all things are possible and when you have millions of prayer warriors nothing can stop you.

I want to take a moment to thank everyone who was there a year ago in the morning waiting with our family in the waiting room while Weston was being born. For those who came up to the hospital to see us, those who prayed with us before Weston's hernia repair surgery. We love you all, and we praise God that we have you in our lives and especially Weston's.

I am so excited emotions are mounting. I can't believe the journey we have been on since last year and today marks the big day. I praise God every day that Weston has made it and has come so far.

Thinking back to that morning going in for the scheduled c-section not knowing what to expect, since I had never had major surgery before plus not knowing how Weston would be. I remember the frustration of my doctor because neonatology hadn't gotten down there at 7:30 and didn't make it down there until 8, he was so upset, he kept saying "do they not realize how sick this baby is." I remember them pulling Weston out and him making little noises but no cry and my doctor kept telling me "Jenny, you don't want to hear him, you don't want him to hurt his lungs." I don't think I'll ever forgot that. I remember getting a call at 5 the next morning telling us that they were putting Weston on ECMO and our worst fear. Seeing Weston for the first time with the ECMO cannulas in his neck it was so hard. His doctor performing his hernia repair surgery three days after he was born. Saved his life, they could not believe how much of his diaphragm wasn't there, he only had 10%. His left lung only a nub at 20%.

Being on ECMO for 10 days, there were a couple days there I was wondering if he would ever come off. They would turn the ECMO down to 0 and then his CO2 levels would climb back up and his stats would drop. But Weston did it, praise God. Placed on the oscillating ventilator for 20 days and then placed back on the conventional ventilator for 2 months. Being extabated on September 3, almost two months old. Not seeing white tape on his face.

Working on eating, worrying about another surgery for his PDA since he was still shunting. Got his PDA ligation and it worked. Worrying about if his doctors will let him go home on a NG tube or if we have to do an G tube. I praise God every day that his surgeon didn't want to reopen him unless we begged him to do it.

Coming home after three months, going home on a NG tube but hey I could handle that my baby was coming home. He caught pneumonia after being home only a month, so he had to go back on oxygen. So blessed with his pediatrician. Caught RSV which was turning into pneumonia after being home five months.

He has over come so many hurdles and we are having a huge birthday celebration. If you are able to make it we would love to see everyone, we love sharing our son and how much God has affected his life and given him to us.

God bless you all and thank you for sharing in our journey this first year, I know many more are to come and I pray that they might be more uneventful than this year has been for our family.

First Birthday around the corner

2009-07-04T12:04:00.000-07:00

Less than a week and my miracle baby is going to be ONE! I praise God every day and thank Him for holding us when we first found out about Weston's condition and for holding us even tighter through these past months.
I will admit it is not easy being the mom of a child who other people say has special needs. I don't think he does but I know not every mom gets to torture their child every week by dropping an NG tube, Weston is getting stronger and knows right when to fight so he doesn't get to tube down and we have to do it over and over. He knows after about 3 attempts I stop and have to regain my composer of dropping the tube.
We are getting preparred for his big birthday bash, I can't wait and I am so excited that we will have a lot of our family and friends to help us celebrate this amazing event, it is not everyday that we get to see a miracle.
We were so blessed that we were invited to Isabel's first birthday party and it was so great to meet a lot of the Howard's friends and family and for them to meet Weston. I can't believe that Isabel is one, the time has gone by so fast.
Now to the serious stuff. On Thursday we took Weston to see his pediatricia

n he has been throwing up more and more. It used to be just in the mornings but now it is happening at every feed. First I called his GI doctor on Wednesday and waited for a response after a day of waiting I called Dr. Stanford and he saw that afternoon and we told him what was going on, I was really worried that Weston might have re-herniated which is a possibility and not far from my thoughts. So Dr. Stanford ordered an x-ray just to see if there were an obstructions. Well Weston is backed up pretty bad, he has a mass about the size of a baseball so no wonder he is throwing up he can't take anymore. So we have been giving him more water for one of his feeds and some prune juice trying to get him unblocked so to speak. He is still happy and moving around which is what we want. We also got to keep his x-rays and they look really good, every thing is still down where is should be and we think we can see where his left lung has grown some, so that is really exciting. I have definitely learned that Weston can take a whole lot more than I ever could. He is such a blessing. We love him so dear.

Thank you all for your continued prayers.

Love,
Jenny

Crazy Satruday

2009-05-25T12:49:00.000-07:00

Many of you follow us to find out how Weston is doing and how he is improving every day. Well for once Weston has not been the worry of our lives and we would like your prayers for our older son Quinton.
On Saturday after noon my husband Timothy, our brother-in-law David were working on Timothy's Trans Am in the garage. They were changing out the radiator and Quinton was wanting to be with his Daddy all day and help with the car. Well they changed out the radiator took it for a drive to make sure everything was working and got it in the drive way, had to running for a little bit longer and then backed it into the garage and turned off the car. About 15 minutes later, there was a popping noise and boiling antifreeze spraying everywhere.

The antifreeze hit both Timothy and Quinton. Timothy's hip got burned. Quinton got to worst of it. Quinton's right side of his face, and his right arm have first to second degree chemical burns. We rushed straight to the ER and got treated right away, the hardest part was when the medical them had to scrap away the dead skin and debris. Not fun for Mommy and Daddy to listen to. Quinton is a real trooper though. We go and see the burn clinic at Children's on Tuesday sometime.
I am so proud of him. Quinton is still trying to understand what happened. He is almost 3 so he doesn't understand where the "fire water" came from..what he is calling the antifreeze and he doesn't understand why the car hurt him..he loves cars. But we are blessed that Timothy knows so what what Quinton is going through they are burn buddies and Quinton does not want Daddy out of his sight. Timothy leaving for work this morning was tough.
Keep our family in your prayers. Pray that Quinton will heal and that if there is scaring that it will be minimal. We are so blessed and thank God that it wasn't worst.

Jenny

Movin' and grooving

2009-05-19T08:20:00.000-07:00

Weston is starting to get more mobile. Saturday we went down to my sister-in-laws and while we were there, not sure if it is because it was so place new but Weston started to try and crawl. It is so exciting. He starts grabbing for something and starts to move towards it, he gets a leg stuck underneath him but he stays that way for awhile which is really exciting since usually he gets frustrated really easily.
We also started him on the stage 2 foods and he is handling them really well. He loves chewing on everything so probably starting to get in his top teeth. We are also excited about his eating drinking, he took 55 cc's last night from the bottle, that is almost 2 oz, yeah! His refluxing is getting better, he only spit up once yesterday and that was because he got chocked on a little, microscopic piece of toast. Timothy and I are thinking that if we get his dried up and no snot that he might really take off on eating.
It is amazing to see his brain working, he tries to do everything that big brother Quinton does and wants to be right with him and Daddy when they are playing.
Weston is just the happiest baby and we are so proud of all the steps he takes forward. Yesterday he also put his foot in his mouth, which is amazing, he was so stiff when he came home and wouldn't bend at all. The steps he contniues to take are amazing.

Growing up so fast

2009-05-14T07:36:00.001-07:00

Not sure if Weston will be a doctor when he grows up but I couldn't pass up dressing him in scrubs for his first birthday pictures. Time has gone by so fast, I cannot believe that he is 10 months. He has accomplished so much and always amazes us everyday. Weston gave me a great gift on Mother's day he said "Mama" for the first time, hasn't really said it since but it was so special.
We went and saw Weston's GI doctor on Tuesday and he was concerned Weston had lost so much weight 400mL, but when he saw him he said Weston didn't look to bad, just that it looked horrible on paper. He was also upset he put us on Neocate for Weston's eczyma and it didn't clear up so dairy isn't Weston's underlying problem. His doctor said that he is going to keep him on Neocate for a little longer to see if Weston's starts to gain weight again. We had changed his feeding schedule and amount from every three hours to every four and from 120cc which is almost 4 oz to 140cc which is almost 5oz. Weston has tolerated that change really good, just in the middle of the chnage he caught a stomach bug and ear infection which didn't help. So we got back to the GI doctor in two weeks to see if he is still losing and then figure out what the next step is.
Weston just rolled over all by himself, so exciting. Mommy wasn't paying attention and my leg was in his way so he couldn't do it the first time.

Happy Mother's Day!

2009-05-10T13:20:00.001-07:00

Happy Mother's Day!

Today is a great mother's day, my first mother's day with Weston. I thank God for where we have been and where we are going. Last year I was unsure of what to be feeling on this day, there was joy but uncertainty. My heart was breaking not knowing if our son would survive. I knew I wouldn't get to have the first like most mothers but the Lord has given me so many more first that most mother's never get to experience. Like most mothers you cherish the first sound your baby makes wait two months and that sound it even more precious. After your child is born you cannot wait to hold your new bundle of joy in your arms wait two months and the joy that fills your heart when you finally getting to hold your precious one is even more overwhelming. Surviving a surgery at 3 days old, coming off ECMO at 10 days, breathing on his own, and amazing the medical world. I am praising God and thanking him for today for blessing my life...my families life with this special child for Weston who continues to overcome and always come out on top. He gives me strength every day with a smile and a laugh.
What a wonderful Mother's day this is :o)

Happy in the day, Sick in the night

2009-05-07T21:17:00.000-07:00

My poor baby, it seems like he gets off an antibiodic and then he catches something else. He just got off of one on Monday and now has who knows what. Yesterday he started not feeling good around 6:30 at night and was running a fever of 102. We gave him tylenol it dropped his temperature and around 3 in the morning Timothy was able to put Weston in his own bed and come to bed as well. They have been sleeping in the chair. This morning Weston was doing good, I mean he was a little tired and not playing as much as usual but I figured well he was sick last night he wont be up to par just yet. He drank some from his sippy cup and even took some milk from the bottle. So we put off going to see his doctor because I thought he was feeling better. Then around 5 ish, tonight he started throwing up and running a temp of 101. So gave him tylenol again and he started to feel a little better around 7 and then all of a sudden when we started his last feed, he starts throwing up again, his heart rate went into the 200's and he dropped his oxygen only a little down to 95. So we stopped his feed and undressed his trying to get his temp down which now it was up to 103. Right now he is sleeping on Daddy's chest and stating good, 98 and heart rate 119. We are going to the doctor even if he is jumping off the walls. I just don't understand how he could be feeling good this morning and then this evening be so different. I worry about him so much. Just hope we can figure out what is going on and make him feel better.

Rainy Saturday

2009-05-02T12:41:00.000-07:00

Rain has kept the Rogers' family inside for today, we are having a productive day thought moving furniture trying to get the boys room set up to were I like it and getting the guestroom ready for when everyone is here in July for Weston's first birthday. I cannot believe he'll be two in a couple of months. I almost have his invitations completed so I can get them out early enough for his doctors and nurses to clear their schedule so they can come.
Weston is doing great, he is having fun playing with Daddy and Quinton and Thomas the Train, the train comes rolling by and Weston is trying to grab it, he is really fast. We just started feeding him every four hours, so far so good, he has not refluxed more so that is promising since we are feeding him 20cc extra each time, I was worried about his stomach not being big enough, but he is doing great. He never ceases to amaze me. Weston also loves drinking out of his sippy cup, he takes at least 8oz a day from it so that is so exciting. I am trying to figure out what we can start feeding him, I want to start pureeing food for him so he can start eating what we eat so I am starting to thicken his first foods with cereal to get him used to thicker food being in his mouth and him not gagging. Weston is putting everything in his mouth. Well he has been on neocate milk for almost a month and still no change in his eczema so I am guessing he is not allergic to dairy but we'll see what his GI doctor says in a couple of weeks.

Headed on the right track

2009-04-29T12:43:00.001-07:00

Just met with the nutritionist and I am so excited. She said Weston looks great and that this is the perfect time to try working with him more on oral feeds and move him from getting 120cc's every 3 hours to getting 140cc's every four hours. She said right now he is getting 28 oz a day and when we change to the other schedule he'll be getting 18oz a day but she said that will promote appetite and make him want to eat. I am praying that this will make Weston want to eat more and explore. Its always nerve wrecking to not know if you're going to harm your baby especially when you are changing their feeding schedule but she assured me that he is going to be ok and what to watch for. I think Weston is ready for this step and we'll never know until we give him this chance.

Last night Timothy fed him some vegetable broth from his vegetable soup and Weston loved, he kept wanting more and opening his mouth big and wide waiting for the next taste. It is so exciting!

This morning while I was working with him on tummy time, I was crawling around in front of him and he was watching me and he started in the horizantal position and ended at maybe 30 degrees so he had moved which is so exciting too, he is starting to want that mobility. We are slowly getting there.

He still continues to amaze me he is still saying "dada" and "nana", so I am hoping soon "mama" will come out of that cute mouth. He is the sweetest angel.

Cold's are no fun

2009-04-27T10:04:00.000-07:00

Last week Weston had a runny nose and we thought perhaps he had allergies. Well on Friday night he did not sleep at all unless he was being held straight up on either daddy's shoulder or mommy's shoulder. So Saturday morning we called for him to go and see a doctor to make sure everything is ok. When we go to the doctor he was running a 102 temp. and the doctor said that his ear looked a little red and swollen. She said he sounded clear, which is always a GREAT thing to hear. She gave him a strong antibiotic so hopefully that will clear up whatever virus he has. We continue to thank God daily that our son is such a strong fighter and we know that every little bug he catches and over comes just makes him stronger.

Working hard during therapy

2009-04-22T13:45:00.001-07:00

Today was therapy day and Weston is wiped out. We are working on tummy time, trying to get him to want to crawl, he is starting to get better and tolerating it longer each time. We are also working on standing and he is really enjoying that, working on balance, he'll probably be walking before we know it. Still working on eating and drinking. He is loving to put everything in his mouth, it amazes me. He tried a pretzel for lunch today and loved sucking the salt off it if, gave him a different taste in his mouth and texture. Weston is sitting up so good and has started to try and push himself up into a sitting position.
He has another bottom tooth breaking through. So soon he'll have two bottom teeth. The other day I think I heard him make the "m" sound so maybe soon he'll be saying mama and just not dada, but I know daddy loves hearing him say it.

Our heart breaks for the Kuehl family in the loss of Kaden, he fought hard for 17 days and decided to chose wings over feet. Here is their blog: http://kadenalexkuehl.blogspot.com/

First Sunday morning church service

2009-04-19T20:30:00.000-07:00

The most exciting time when you can first take your new one to church and show them off to everyone who means so much to you. It is especially special when your little one is a miracle and all of your church family has been praying for them from the beginning, when we found out we were expecting an angel. Weston thought church was the greatest place ever, new people, a new place and beautiful singing. Everyone is so amazed at how well he behaves and how happy he is. I told one of the ladies who made that comment that the angels gave him a lot of happiness while he was on ECMO. He really enjoys watching the song leader and our preacher, he just sits in awe, which is so amazing just to watch him watch them. I am so proud of him and how well he behaves, we just have to teach everyone else to listen to the sermon and not watch Weston, but I don't blame them they don't get to see a miracle everyday :)
We still haven't seen much change in his skin clearing up the ecezma since we changed formulas. He is still spitting up some, usually when he has taken to much to drink and gets chocked. He is doing so good though, we are so proud of him. He had some pears today only a couple of spoon fulls but every little bit counts. We have gotten him off of oxygen during the day but then at night we put him back on, we don't want to hear the pulse ox beeping all night, plus I think we worry about him needed it and us not know when he is asleep that he needs but I think he is doing fine and really doesn't need it but soon, hopefully we'll be off of it.
He is getting better at standing. I think we'll be walking before we crawl, doesn't matter to me, he is doing great :)

Slow progress...but there is progress

2009-04-17T20:24:00.001-07:00

Well we are slowly working on eating. Weston is so picky, we are so excited that finally he is actually taking the bottle again. The most he took today at one setting was 18cc which when you think that 29cc makes up an ounce we have a long way to go but it is better than anything. We are working on spoon feeding also, and he is doing really good he takes at least 5 bites before he is done. We haven't been able to get him to take anything to solid he starts to gag once he gets it in his mouth, so that is really frustrating because he wants everything that we are eating which is awesome just wish he didn't gag. His OT said that it is just going to take time. Tonight we took out his NG tube after his last night feeding so for the first time in a long time he can sleep without it, always hate having to put it back down but don't mind :) don't want a G tube especially since he doesn't need one we just have to work.
We are also working on stand which I can't believe my baby is standing, grow up to fast, I am so proud of him. He still hates tummy time but I don't blame him.

We have come a long ways

2009-04-16T19:31:00.000-07:00

Weston was born on the 9th of July with CDH, he was taken via cesarean section because we knew of this condition. He was intabated right after he was born and then taken up to the NICU to be put on a ventilator and for the doctors to examine him. He did really good for the first 15 hours, which his doctor called his 'honeymoon period' because at 5:30 in the morning we got the call to release him so they could perform the surgery to place him on ECMO a lung by pass machine. Which when we went to visit his surgeon he told us that if we hear the word ECMO that it is very serious and that our baby probably would not make it. We prayed and prayed. Two days after Weston's birth his surgeon performed his hernia repair while he was on ECMO, we praise God that he did. Weston had both his lungs, his right lung was there but we were not sure of its functionality and his left lung was only a nub, 20% formed. Weston only had 10% of his diaphragm formed and everything was in his chest(stomach, bowels, liver, and intestines) they were not able to close Weston completely after his surgery because he didn't have enough skin, so they had to place a patch over his stomach and then performed that surgery at 2 weeks later and were able to close him up. Praise God, Weston was successfully taken off of ECMO after a couple of attempts, he was on ECMO for 10 days. He was placed on a conventional ventilator but after his CO2 levels kept climbing they had to place him on an oscillating ventilator for 15 days and praise God his levels started to level back off and he was able to wean back down to the conventional ventilator. Weston was doing very good and the doctors were weaning him really good until he caught a staph infection in his ventilator tube and had to fight off that infection which made them have to increase his flow and raise him back up. After two months he was finally extabated and we were able to hold our angel for the first time, he was two months old. It was so amazing, to finally hold our newborn baby, he enjoyed it too. First they put him on VapoTherm and weaned him down really good and got him down to regular nasal cannulas and after two and half months he was free of oxygen and breathing room air...Praise God! After three months in the NICU we were blessed to bring our son home, it was the most exciting day, to know that God had answered our prayers and made our son well enough to be left in our care.

Weston came home in October and in November he caught pneumonia and was in the hospital for three days and we were so blessed that he was able to come home the day before Thanksgiving, we had so much to be thankful for.

We have kept Weston in isolation since he left the NICU and were getting so excited that in April we would be able to take him out because that would be the end of flu and RSV season, which Weston is really susceptible to because of his lungs. We almost made it, but the end of March Weston caught RSV and started to develop pneumonia. He stayed in the PICU for three days and on the regular pediatric floor for two, we are so blessed that he came home stronger and we know each battle(sickness) he overcomes makes him stronger. We praise God every day for our miracle our angel.

I cannot wait to share more about our angel as he grows to give others hope and to know that there are survivors. Weston is home on an NG tube he has oral aversion so we are slowly getting him to take foods by mouth. He is on a little bit of oxygen and we are weaning that day everyday. His scar is a constant reminder of how special he is and how blessed we are.