I was driving to school Saturday morning and a song came on the radio that had me in tears. Matt Hammitt is the lead singer for the band Sanctus Real. He is also a husband and father to a child who was born with a heart defect. This is a song he wrote a few weeks before his son Bowen was born. Check out bowensheart.com for current updates and an inspiring story.
Buy this song on iTunes!
All of Me
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.
Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
Thursday, October 6, 2011
From The Heart
It's been nearly 4 months since Jack's trach was removed, and I am so proud of the progress he has made! Jack has always done everything at his own pace, and I have learned to be patient... very very patient. He always seems to 'beat the odds' but now we have to face his biggest obsticle... LIFE.
I am going to be brutally honest, mostly for myself but also to let others see in to my heart.
Everyday I pray for a miracle.
Everyday my heart breaks.
Everyday I hold Jackson and wish I could take his place.
I try to live day by day, and not think about the future.
I try to give my heart a break and put a smile on my face.
I try to be happy.
I will never label Jackson as disabled.
I will never stop loving him.
I will never give up on him.
I wonder what life would be if things were "normal"
I wonder if he will go to college.
I wonder if time heals all wounds.
I know that Jackson is happy.
I know that He is loved.
I know that God has a plan.
I am going to be brutally honest, mostly for myself but also to let others see in to my heart.
Everyday I pray for a miracle.
Everyday my heart breaks.
Everyday I hold Jackson and wish I could take his place.
I try to live day by day, and not think about the future.
I try to give my heart a break and put a smile on my face.
I try to be happy.
I will never label Jackson as disabled.
I will never stop loving him.
I will never give up on him.
I wonder what life would be if things were "normal"
I wonder if he will go to college.
I wonder if time heals all wounds.
I know that Jackson is happy.
I know that He is loved.
I know that God has a plan.
Thursday, September 29, 2011
It's Been A While!
It's been quite some time since I have updated, and there is so much to share! I can not believe that this summer is already gone and we are a week in to FALL!
On August 20th the Noblesville Eagle Riders hosted their annual bike ride. Jackson was chosen as the honorary guest for this ride and we could not believe how many people came out to support Jackson. Over 200 motorcycle riders did the 120 mile bike ride and Poker Run. The day was fantastic. It was so humbling to see so many people who just wanted to help. By the end of the day we were so overwhelmed with love and support of our community. Jackson had a great time watching all of the motorcycles as they left for the ride. I know I keep saying this but it truly was an amazing day! We are so grateful for everyone who was involved, and all of the local business who sponsored the event as well.
Jackson has been doing very well in his therapies. He has been learning how to stand in his Gait Trainer since he received it in July, and now he is trying to take some steps! He has been doing great, and we know with Jackson that he will do things on his own time. His physical therapist is very impressed with all of the improvements in his muscle tone and body awareness. We are now starting to check a few exercises off of his (very long) list, and add new ones as his goals are being met. His Speech Therapy has also been going well. It's hard to think that just 3 months ago Jackson could not vocalize at all, and now he is full of sounds! We do feeding therapy with both Speech and Occupational Therapy, which gives us more chances
to try different things with Jackson as far as food textures and taste. He will eat pureed food like a champ, and is taking anywhere from 4 to 8 ounces at a time! When it comes to textured foods (anything other than pureed) Jack tends to have trouble with the whole chewing breathing and swallowing part. He has gotten better since we started, but that too is taking time. We don't force him to eat by mouth since he has the G-Tube and we want eating to be a pleasant experience for him. He likes to stick everything in his mouth now, which has not always been the case- That in itself is half the battle! Our original goal was to have Jackson taking 30% of his feeds orally, which on a good day he exceeds. So now we are working on giving him 50% of his feeds orally, and going from there.
We have also added a new device to our "bionic baby." We struggled with Jacksons feeds for so long and were literally feeding him all of the time. With a bolus feed you dump the food directly in to a syringe and let gravity push the food in. With Jack you could only do 2 ounces at a time and wait at least a half hour or he would projectile vomit all of the contents of his stomach. It took nearly 3 hours to feed him 8 ounces of food, and then it was time to feed him again! So Jackson was never getting hungry, nor was he ever feeling full. So we decided to switch him to a feeding pump. Conventionally the feeding pump is used to pump food in continuously at a slow rate 24 hours a day, but in Jacksons case we are using it to pump in an entire feed (8oz) in about an hour so he can feel full, digest, and get hungry again. Day 1 Jackson threw up 2 feeds and I was getting discouraged, but by the end of day 2 he did not puke once! That's a huge deal for him, as he would throw up at least twice a day. From then on it has been great! He is tolerating his full feed with no issues and only has to be hooked up for an hour! We also have been able to SLEEP! Jack still gets a night feed and when he was bolus fed we would have to do the same routine of 2 ounces then wait a half hour etc... Until his feed was finished. Now we just hook him up and let it run for an hour! We also noticed that Jacksons interest in food became greater after switching to the pump, and he took off with his oral feeds almost instantly! It is also very portable and we can now feed him much easier when we are out and about! ( sorry if this paragraph doesn't make sense...it does in my head lol)
Sorry for the long post. I just want to document EVERYTHING :)
Here is a video of the supporters taking off for Jackson's Ride! click here to view it!
On August 20th the Noblesville Eagle Riders hosted their annual bike ride. Jackson was chosen as the honorary guest for this ride and we could not believe how many people came out to support Jackson. Over 200 motorcycle riders did the 120 mile bike ride and Poker Run. The day was fantastic. It was so humbling to see so many people who just wanted to help. By the end of the day we were so overwhelmed with love and support of our community. Jackson had a great time watching all of the motorcycles as they left for the ride. I know I keep saying this but it truly was an amazing day! We are so grateful for everyone who was involved, and all of the local business who sponsored the event as well.
Jackson has been doing very well in his therapies. He has been learning how to stand in his Gait Trainer since he received it in July, and now he is trying to take some steps! He has been doing great, and we know with Jackson that he will do things on his own time. His physical therapist is very impressed with all of the improvements in his muscle tone and body awareness. We are now starting to check a few exercises off of his (very long) list, and add new ones as his goals are being met. His Speech Therapy has also been going well. It's hard to think that just 3 months ago Jackson could not vocalize at all, and now he is full of sounds! We do feeding therapy with both Speech and Occupational Therapy, which gives us more chances
to try different things with Jackson as far as food textures and taste. He will eat pureed food like a champ, and is taking anywhere from 4 to 8 ounces at a time! When it comes to textured foods (anything other than pureed) Jack tends to have trouble with the whole chewing breathing and swallowing part. He has gotten better since we started, but that too is taking time. We don't force him to eat by mouth since he has the G-Tube and we want eating to be a pleasant experience for him. He likes to stick everything in his mouth now, which has not always been the case- That in itself is half the battle! Our original goal was to have Jackson taking 30% of his feeds orally, which on a good day he exceeds. So now we are working on giving him 50% of his feeds orally, and going from there.
We have also added a new device to our "bionic baby." We struggled with Jacksons feeds for so long and were literally feeding him all of the time. With a bolus feed you dump the food directly in to a syringe and let gravity push the food in. With Jack you could only do 2 ounces at a time and wait at least a half hour or he would projectile vomit all of the contents of his stomach. It took nearly 3 hours to feed him 8 ounces of food, and then it was time to feed him again! So Jackson was never getting hungry, nor was he ever feeling full. So we decided to switch him to a feeding pump. Conventionally the feeding pump is used to pump food in continuously at a slow rate 24 hours a day, but in Jacksons case we are using it to pump in an entire feed (8oz) in about an hour so he can feel full, digest, and get hungry again. Day 1 Jackson threw up 2 feeds and I was getting discouraged, but by the end of day 2 he did not puke once! That's a huge deal for him, as he would throw up at least twice a day. From then on it has been great! He is tolerating his full feed with no issues and only has to be hooked up for an hour! We also have been able to SLEEP! Jack still gets a night feed and when he was bolus fed we would have to do the same routine of 2 ounces then wait a half hour etc... Until his feed was finished. Now we just hook him up and let it run for an hour! We also noticed that Jacksons interest in food became greater after switching to the pump, and he took off with his oral feeds almost instantly! It is also very portable and we can now feed him much easier when we are out and about! ( sorry if this paragraph doesn't make sense...it does in my head lol)
Sorry for the long post. I just want to document EVERYTHING :)
Here is a video of the supporters taking off for Jackson's Ride! click here to view it!
Tuesday, August 16, 2011
Let Them Fall
Letting the tears fall is not an easy thing to do. In fact I don't remember the last time I let out a good cry, until today. As I walked out of the hospital and in to the open air, I just could not hold back the tears. I thought I was prepared, I really did, but the way she "put it" just made me cringe.
"You know your son has Cerebral Palsy, Right? Lets just face the facts and deal with this."
I sat with Jackson in my lap as he played with his feet, I could feel the life drain from my body.
"Has he ever been diagnosed before?"
"No."
''Well let me do the honors. It does not change anything, it's just a diagnosis."
"OK."
What I wanted to say was... "Who are you? you have no Idea who my son is, and what he has been through. You are not God, and you have no right to say that my sweet little boy is ''damaged!'' Instead I continued to stair this lady in the eyes, just as expressionless as she was.
Today we went to see the Developmental Pediatrics team so Jackson could be evaluated for a research study he has been in since birth. They wanted to give him the Bayley Exam, which is a test performed by a Psychologist to see how your child is Developing. Jackson seemed to do very well. All they really did was play with toys, and try to get him to imitate sounds. After the exam we headed to the next room for Jackson's Neurology Evaluation. It's hard to fail one of these, and he did great tracking the lights, and responding to tickling on the feet. Then came the ''hard'' part... answering questions.
''Is your child able to run up the stairs using each foot in coordination with one another?"
"No."
''Can your child jump up and down for 5 seconds."
''No."
''Can your child walk a straight line"
"No."
"Can your child walk with assistance."
"No."
''Does your child sit for longer than 10 minutes at a time."
"No."
This questioner went on for a total of 100 questions...
Jackson was getting a bit squirmy, so I put him in his stroller while the NNP (neonatal nurse practitioner) went over the questioner." She then came over and checked Jackson's reflexes, muscle tone, and tracking skills once again.
"Cognitively Jackson is testing at or above his adjusted age of 19 months. Fine motor is around 12 months, gross motor 7 months, Oral motor- not applicable."
"Okay."
All I could fathom to say was 'Okay?' I knew this was coming... just not today. I thought I had a little more time to accept reality, and live without the diagnosis for just a little bit longer. I do know that this is most likely a very mild form of CP, it still is a brain injury (from being extremely premature). I have prayed for miracles before, and God has prevailed. I am not pessimistic about Jackson's quality of life because he is one happy boy! I do know that God is in complete control and can see my heart, and mend it. So now we begin life with CP. What does that mean? It means that God was, is, and always will be in control.
I let the tears fall as we walked out the hospital doors. We had just visited baby Jillian in the ICU who is another amazing child that went through major surgery yesterday. There is something about Riley that bonds every patient, parent, family member, or friend... pain. Everyone there is experiencing pain of some way, weather it be physically, emotionally, or spiritually, every single person is in pain.I let the tears fall not because I was sad or angry, but because I would give anything to take the place of these children who have to endure more than anyone will ever really know.
I am reminded that I can do ALL things through Christ who gives me strength. Peace Be with You.
_____________________________________________________________________________
Here is a little Poem that a friend shared with me...
WELCOME TO HOLLAND
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
"You know your son has Cerebral Palsy, Right? Lets just face the facts and deal with this."
I sat with Jackson in my lap as he played with his feet, I could feel the life drain from my body.
"Has he ever been diagnosed before?"
"No."
''Well let me do the honors. It does not change anything, it's just a diagnosis."
"OK."
What I wanted to say was... "Who are you? you have no Idea who my son is, and what he has been through. You are not God, and you have no right to say that my sweet little boy is ''damaged!'' Instead I continued to stair this lady in the eyes, just as expressionless as she was.
Today we went to see the Developmental Pediatrics team so Jackson could be evaluated for a research study he has been in since birth. They wanted to give him the Bayley Exam, which is a test performed by a Psychologist to see how your child is Developing. Jackson seemed to do very well. All they really did was play with toys, and try to get him to imitate sounds. After the exam we headed to the next room for Jackson's Neurology Evaluation. It's hard to fail one of these, and he did great tracking the lights, and responding to tickling on the feet. Then came the ''hard'' part... answering questions.
''Is your child able to run up the stairs using each foot in coordination with one another?"
"No."
''Can your child jump up and down for 5 seconds."
''No."
''Can your child walk a straight line"
"No."
"Can your child walk with assistance."
"No."
''Does your child sit for longer than 10 minutes at a time."
"No."
This questioner went on for a total of 100 questions...
Jackson was getting a bit squirmy, so I put him in his stroller while the NNP (neonatal nurse practitioner) went over the questioner." She then came over and checked Jackson's reflexes, muscle tone, and tracking skills once again.
"Cognitively Jackson is testing at or above his adjusted age of 19 months. Fine motor is around 12 months, gross motor 7 months, Oral motor- not applicable."
"Okay."
All I could fathom to say was 'Okay?' I knew this was coming... just not today. I thought I had a little more time to accept reality, and live without the diagnosis for just a little bit longer. I do know that this is most likely a very mild form of CP, it still is a brain injury (from being extremely premature). I have prayed for miracles before, and God has prevailed. I am not pessimistic about Jackson's quality of life because he is one happy boy! I do know that God is in complete control and can see my heart, and mend it. So now we begin life with CP. What does that mean? It means that God was, is, and always will be in control.
I let the tears fall as we walked out the hospital doors. We had just visited baby Jillian in the ICU who is another amazing child that went through major surgery yesterday. There is something about Riley that bonds every patient, parent, family member, or friend... pain. Everyone there is experiencing pain of some way, weather it be physically, emotionally, or spiritually, every single person is in pain.I let the tears fall not because I was sad or angry, but because I would give anything to take the place of these children who have to endure more than anyone will ever really know.
I am reminded that I can do ALL things through Christ who gives me strength. Peace Be with You.
_____________________________________________________________________________
Here is a little Poem that a friend shared with me...
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Sunday, July 10, 2011
Making Strides
Jackson has been trach free for over a month now and I can't believe how much our lives have changed. We are not strapped down to the house, or worrying about how much battery power we have left anymore... life just seems simpler. Yes it's still chaotic, but it's a 'different' kid of chaos. We can now focus all of our time and energy on his therapies, and most important eating food by mouth. Jack gets 100% of his 'food' through a G-tube, which has been a lifeline for him, and has given him the ability to gain weight while he had his trach. Jackson sticks EVERYTHING in his mouth...except FOOD! It baffles everyone, especially his feeding therapist. He has such an adversion to food in his mouth that he will actually gag when you put food on the tip of his tounge. On the plus side, we know it's behavioral versus an actual anatomy problem, so with lots of coaching and reinforcement we can and WILL get him eating... just on his own time. Our next therapy Goal is to get Jackson sitting on his own by January (his adjusted 2nd birthday). In just 4 sessions with his new Physical Therapist, Jackson has made some awesome progress. We know that he will achieve the goal, again just on his own time. He is getting stronger every day, and is making awesome progress in his therapies.
Be strong in the Lord and never give up hope, your going to do great things...I already know! -Sidewalk Prophets
Be strong in the Lord and never give up hope, your going to do great things...I already know! -Sidewalk Prophets
Wednesday, June 22, 2011
Quick Update
I just wanted to say thank you to all of you who have prayed non stop for Jackson. He truly would not be here today if it were not for all of you Prayer Warriors! Since Jackson was born we have always felt a sense of peace with his entire journey. Although we know it's not 'over' we are looking forward to the new things we get to work on. His voice is loud and clear! He loves to babble and make silly sounds. Just yesterday he said da-da over and over of course while Nick was at work, and my video camera nowhere in sight. His laugh is hysterical, and it has evolved just over these past two weeks.
Another awesome FIRST for Jackson- He got to stay at Grandma's house for the first time! It was really a first for all of us, as we have never left him anywhere since he has been home! Jack and the Grandparents had a blast, and Nick and I got some much needed rest and even slept till NOON!
Last week we visited Jack's eye doctor who did his surgery on his eyes. We noticed that his left eye was still crossing, but the doctor is not concerned in the slightest bit. He says it's minimal, and to give it a year to correct. There is always a chance the surgery will have to be repeated, but as of now that is not the case. So we checked another specialist off of our list! We do not need to return to his eye doctor unless we notice something is wrong!
Taking life one day at a time... God is Good.
Another awesome FIRST for Jackson- He got to stay at Grandma's house for the first time! It was really a first for all of us, as we have never left him anywhere since he has been home! Jack and the Grandparents had a blast, and Nick and I got some much needed rest and even slept till NOON!
Last week we visited Jack's eye doctor who did his surgery on his eyes. We noticed that his left eye was still crossing, but the doctor is not concerned in the slightest bit. He says it's minimal, and to give it a year to correct. There is always a chance the surgery will have to be repeated, but as of now that is not the case. So we checked another specialist off of our list! We do not need to return to his eye doctor unless we notice something is wrong!
Taking life one day at a time... God is Good.
Thursday, June 16, 2011
A Whole New World!
The day finally came. After 15 long months of suctioning, cleaning, protecting, and not to mention worrying- that awful piece of plastic is GONE! Bye Bye Trach!
It's almost surreal, and it all happened so fast. We checked in to the hospital hooked him up to some monitors, and then they just told me to take it out... that's it. I sat him up and unhooked the straps and pulled it out. He cried initially and it was music to our ears!
Hearing your child cry for the first time always melts your heart... hearing your child cry for the first time and then saying MAMMA... bring on the tears! His first word...Mamma! It was absolutely beautiful. His voice is still soft and a bit raspy, but that will go away as he uses it more. After the trach was taken out we put a bandaid over the Stoma (hole where trach was placed) and just waited a few hours to make sure he was not going to have any issues. We then moved in to a short stay unit and just hung out all day and watched TV, and played with toys. He went back to the sleep lab that night for a full Sleep Study with full monitoring. They didn't get us in until about 10:30pm and Jack was getting sleepy. Heck we were all sleepy! He cried himself to sleep as they attached monitors all over his body. Nick and I stayed in the room with him and were "cozy" on a child sized hospital bed. We were so tired it didn't matter. They woke us up around 6am and started taking all of the monitors off of Jackson, and then put us back in the short stay unit while we waited for a doctor to review his sleep study. Apparently all was good because the Doctor said he does not need the trach, and he does not need oxygen any more! We packed up Jackson's stuff and headed home! For the first time in his life Jackson was a Wireless baby! (except for the feeding tube).
It has been a week since Jackson's trach was removed, and wow does time fly! There have been so many opportunities opened up for ALL of us! The biggest thing is SLEEP! Jack does not need suctioned anymore, and does not have anything attached to him that would need attention in the middle of the night. Where before we would suction him 3+ times during the night, and occasionally get up if he pulled his oxygen mask off of his trach. Oh and there are no more ALARMS! Nick and I both still have dreams that Jackson is BEEPING! We also don't have to pack the entire house when we go places anymore! We used to always be on a timer... 4 hours is the longest we could stay out without running out of oxygen. Day trips and over night trips were few and far between, but I now see MANY of them in the near future! It's very different to have just Jack and a Diaper Bag... is this all a kid really needs?
On Saturday we took Jackson to the Pool for the first time! He was not too sure what to make of it at first, but he finally got used to it. He loved watching the other kids play and splash. We were not 100% sure if his trach stoma had closed yet so we only had him in water up to his waist. It was a good time to get some much needed sun. Jacks cheeks got a bit Rosy even with SPF 50. Overall it was the perfect day, and we will be going back to the pool as often as we can!
We have some more exciting news. Jackson was evaluated for a Gait Trainer today. It is essentially a glorified walker. It comes with full supports, and over time as he builds up muscle strength the supports are taken away. I actually got to see him take his first steps during the fitting! There is no stopping this kid! So it will replace the order for the Stander that we initially ordered to help him stand... well he mastered that before the stander could even get shipped, so we are moving on to the next thing! Jackson can stand at a coffee table unsupported, but he can not get in to position by him self. It has perplexed a few of his therapists... he can stand, but not sit... interesting. Hopefully the Gait trainer will help strengthen his back muscles, and he can start sitting while he is learning to walk. He will get there... just at his own pace in his own way.
I wanted to especially thank my mom who has been a wonder-woman through this whole thing. She was my savior! She took the time to learn how to care for Jackson and his trach. She comes over almost every day and relieves me for a nap, grocery shopping, or whatever I need to do. She even would babysit so Nick and I could go out for an evening. Caring for Jackson was not an easy thing, and there was A LOT to know. She did it all because she loves this little boy, and the reward of watching him grow and thrive! Jackson absolutely adores my mom, and I do too!
I can't express just how happy of a boy Jackson is. If you ever spend a day with him, believe me it will change your life. His smile is so infectious! Now that he is trach free his laugh is to die for! Things are falling in to place, in God's time. Thank You Lord for blessing us with such a precious gift!
It's almost surreal, and it all happened so fast. We checked in to the hospital hooked him up to some monitors, and then they just told me to take it out... that's it. I sat him up and unhooked the straps and pulled it out. He cried initially and it was music to our ears!
Hearing your child cry for the first time always melts your heart... hearing your child cry for the first time and then saying MAMMA... bring on the tears! His first word...Mamma! It was absolutely beautiful. His voice is still soft and a bit raspy, but that will go away as he uses it more. After the trach was taken out we put a bandaid over the Stoma (hole where trach was placed) and just waited a few hours to make sure he was not going to have any issues. We then moved in to a short stay unit and just hung out all day and watched TV, and played with toys. He went back to the sleep lab that night for a full Sleep Study with full monitoring. They didn't get us in until about 10:30pm and Jack was getting sleepy. Heck we were all sleepy! He cried himself to sleep as they attached monitors all over his body. Nick and I stayed in the room with him and were "cozy" on a child sized hospital bed. We were so tired it didn't matter. They woke us up around 6am and started taking all of the monitors off of Jackson, and then put us back in the short stay unit while we waited for a doctor to review his sleep study. Apparently all was good because the Doctor said he does not need the trach, and he does not need oxygen any more! We packed up Jackson's stuff and headed home! For the first time in his life Jackson was a Wireless baby! (except for the feeding tube).
It has been a week since Jackson's trach was removed, and wow does time fly! There have been so many opportunities opened up for ALL of us! The biggest thing is SLEEP! Jack does not need suctioned anymore, and does not have anything attached to him that would need attention in the middle of the night. Where before we would suction him 3+ times during the night, and occasionally get up if he pulled his oxygen mask off of his trach. Oh and there are no more ALARMS! Nick and I both still have dreams that Jackson is BEEPING! We also don't have to pack the entire house when we go places anymore! We used to always be on a timer... 4 hours is the longest we could stay out without running out of oxygen. Day trips and over night trips were few and far between, but I now see MANY of them in the near future! It's very different to have just Jack and a Diaper Bag... is this all a kid really needs?
On Saturday we took Jackson to the Pool for the first time! He was not too sure what to make of it at first, but he finally got used to it. He loved watching the other kids play and splash. We were not 100% sure if his trach stoma had closed yet so we only had him in water up to his waist. It was a good time to get some much needed sun. Jacks cheeks got a bit Rosy even with SPF 50. Overall it was the perfect day, and we will be going back to the pool as often as we can!
We have some more exciting news. Jackson was evaluated for a Gait Trainer today. It is essentially a glorified walker. It comes with full supports, and over time as he builds up muscle strength the supports are taken away. I actually got to see him take his first steps during the fitting! There is no stopping this kid! So it will replace the order for the Stander that we initially ordered to help him stand... well he mastered that before the stander could even get shipped, so we are moving on to the next thing! Jackson can stand at a coffee table unsupported, but he can not get in to position by him self. It has perplexed a few of his therapists... he can stand, but not sit... interesting. Hopefully the Gait trainer will help strengthen his back muscles, and he can start sitting while he is learning to walk. He will get there... just at his own pace in his own way.
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| A preview of the Gait Trainer we fitted him for (this is not Jack in the picture!) |
I can't express just how happy of a boy Jackson is. If you ever spend a day with him, believe me it will change your life. His smile is so infectious! Now that he is trach free his laugh is to die for! Things are falling in to place, in God's time. Thank You Lord for blessing us with such a precious gift!
Monday, May 23, 2011
Busy Busy Bee!
It seems like we have been on this journey for a long, long, long time. Reality is it has only been 19 months- minutes feel like hours, days like weeks, and months like years...The world seems to move in slow motion when you only get about 20 hours of sleep a week :)
Jackson's Tonsil & Adenoid surgery went very well, and he is recovering nicely. The Bronch (scope of airway) showed nothing of concern. They lasered off a small piece of tissue that had grown above the trach. Jackson has a normal sized airway and moving vocal chords!---which means 'structurally he does not need the trach tube...in theory.' He slept the entire day of the surgery which made me even more thankful for his g-tube. I was able to let him sleep while I loaded him with fluids. He was on a great pain medication that was given every 2 hours and rarely fussed. It is a pretty painful recovery for any kid who has a T&A removal, and we expected the worse since he will not take anything orally (like a Popsicle or ice cream) to soothe his throat, but he did extremely well!
Jack after having "Loopy Juice" right before surgery
So whats next?
After the surgery was over and we received the good news about Jackson's Bronch I wasted no time in calling our Pulmonologist to let them know how everything went. Jackson now needs a Sleep Study without his trach in place. First they will do a "Nap Study" during the day where they take out the trach for an hour or two while he is awake (if he naps it's just a bonus). If he does good with that he will then spend the day hanging out in the hospital without his trach, and go back to the sleep lab that same night for a full sleep study. During the sleep study they are looking for any signs of apnea and labored breathing. They will also take Jackson off of oxygen to see how well he does without it. (I suspect he will need it for a little bit after he gets his trach out) But who knows... this kid never ceases to amaze me! JUNE 6th at 8am we will check in and hopefully come home the next day trach free! There is always a possibility that he will not do well, and come back home with a trach... but we are not even going to put those thoughts in our head (or his!)
It has been such a busy month for Jack! He also had Strabismus Surgery today to correct his crossing eyes. The surgery was done by the same eye doctor who did Jackson's Retinopathy surgery when he was in the NICU. The surgery went very well and Jackson was back to him self within an hour! We should see the full results in about 4 to 6 weeks. There is a small chance that the surgery will need to be repeated, but his crossing was pretty mild and we do not expect that to happen.
We are counting down the days until his trach comes out... What a journey it has been. His bedroom is going to look so empty without all of his medical equipment... I can't wait! We are looking forward to ending this chapter in his life, and open up a whole new world of opportunity for Jackson.
Jackson's Tonsil & Adenoid surgery went very well, and he is recovering nicely. The Bronch (scope of airway) showed nothing of concern. They lasered off a small piece of tissue that had grown above the trach. Jackson has a normal sized airway and moving vocal chords!---which means 'structurally he does not need the trach tube...in theory.' He slept the entire day of the surgery which made me even more thankful for his g-tube. I was able to let him sleep while I loaded him with fluids. He was on a great pain medication that was given every 2 hours and rarely fussed. It is a pretty painful recovery for any kid who has a T&A removal, and we expected the worse since he will not take anything orally (like a Popsicle or ice cream) to soothe his throat, but he did extremely well!
So whats next?
After the surgery was over and we received the good news about Jackson's Bronch I wasted no time in calling our Pulmonologist to let them know how everything went. Jackson now needs a Sleep Study without his trach in place. First they will do a "Nap Study" during the day where they take out the trach for an hour or two while he is awake (if he naps it's just a bonus). If he does good with that he will then spend the day hanging out in the hospital without his trach, and go back to the sleep lab that same night for a full sleep study. During the sleep study they are looking for any signs of apnea and labored breathing. They will also take Jackson off of oxygen to see how well he does without it. (I suspect he will need it for a little bit after he gets his trach out) But who knows... this kid never ceases to amaze me! JUNE 6th at 8am we will check in and hopefully come home the next day trach free! There is always a possibility that he will not do well, and come back home with a trach... but we are not even going to put those thoughts in our head (or his!)
It has been such a busy month for Jack! He also had Strabismus Surgery today to correct his crossing eyes. The surgery was done by the same eye doctor who did Jackson's Retinopathy surgery when he was in the NICU. The surgery went very well and Jackson was back to him self within an hour! We should see the full results in about 4 to 6 weeks. There is a small chance that the surgery will need to be repeated, but his crossing was pretty mild and we do not expect that to happen.
He was so happy before surgery!
I feel like we have been running on 'Auto Pilot' these past few weeks. So much is happening I can hardly keep up with it all! Jack's therapies have been increased and we now have PT, OT, and Speech once a week. We were really excited to start back with his PT after taking a few weeks off. A new therapist came and assessed him and by the end of her first session he was doing things we have never seen him do! We originally had a "stander" on order for Jackson to use to help him learn how to stand, but he has once again amazed us and has learned how to do this all on his own. So we are now getting him fitted for a Gait Trainer that is essentially a glorified walker. It will help him to learn how to walk and build up strength in his trunk and legs.
We are counting down the days until his trach comes out... What a journey it has been. His bedroom is going to look so empty without all of his medical equipment... I can't wait! We are looking forward to ending this chapter in his life, and open up a whole new world of opportunity for Jackson.
"For I know the plans I have for you," declares the Lord,
"plans to prosper you and not to harm you,
plans to give you hope and a future."
Jeremiah 29:11
Jeremiah 29:11
Sunday, May 8, 2011
Something "Clicked"
It seems like this past week something just 'clicked' with Jackson. I can't quite put my finger on it, but something has definately changed. He is so motivated now, and WANTS to do his therapies, and play, and be active. He even started bearing weight on his legs! (he's still not too sure what they are for, but it's a start!) Today we were in Target just getting out of the house since it decided to stop raining. Jackson was actually looking at everything, grabbing at things, and smiling at people who passed by. He has always been a social butterfly, but he just seems to be coming out of his shell even more theese days! In the past Jackson seems to do something just to show us, and then not do it anymore... Like sitting, waving bye bye, putting his arms up when he wants held... but now he seems to be doing these things more and more often. He has even discovered that he has legs, and is bearing weight on them when we hold him up ....good boy! :) These are the little things that continue to give us hope that someday he will be a 'normal' kid.
Jackson met with his ENT this past week and he does need surgery to remove his Tonsils and Adenoids before we can move forward with getting his trach out. We had to wait 3 months to see this ENT and have known that this needed to happen since January! To our surprise they were able to schedule surgery for Next Tuesday (May 10th). It's more common than not with trach kids to have this procedure done. It is most likely going to be an Outpatient Surgery unless he has any issues that would make them want to keep him over night. They will also do another Bronch (scope of his airway) during the surgery to see if there is any narrowing or tissues that need to be removed before his trach comes out. 4-6 weeks after the surgery they will schedule another Sleep Study without his trach, and if he passes he will come home trach free! (keeping fingers crossed)
Jackson also has eye surgery this month on May 23rd. This is a less of a surgery and more of a 'procedure' as there will be no actual cutting involved, but still will go under General Anestesia. Hopefully after this no more surgeries! I am a little aprehensive about all of this. Jackson has had surgery before, but it's always scary and heart wrenching to watch your child go through. He has had 2 surgeries in his little life, and has done very well with all of them, so we are praying theese will be just as good.
I also can not get over how happy Jackson is. He is such a good baby...and always has been. He has taken everything with stride and rarely complains. I wish I had half the resilance he has! I have continued to see answered prayers, and miracles happen within this precious little boy. I thank God every single time I see a smile, a frown, a tear, a poopy diaper, and for every single breath that Jackson takes... It's so hard to believe that he is 18 months old. I have watched him grow and develop in ways that not a lot of mothers get to experience, and although it is a hard road It makes every single day just that more special. He is alive, he is happy, he is healthy... Thank You God!
Jackson met with his ENT this past week and he does need surgery to remove his Tonsils and Adenoids before we can move forward with getting his trach out. We had to wait 3 months to see this ENT and have known that this needed to happen since January! To our surprise they were able to schedule surgery for Next Tuesday (May 10th). It's more common than not with trach kids to have this procedure done. It is most likely going to be an Outpatient Surgery unless he has any issues that would make them want to keep him over night. They will also do another Bronch (scope of his airway) during the surgery to see if there is any narrowing or tissues that need to be removed before his trach comes out. 4-6 weeks after the surgery they will schedule another Sleep Study without his trach, and if he passes he will come home trach free! (keeping fingers crossed)
Jackson also has eye surgery this month on May 23rd. This is a less of a surgery and more of a 'procedure' as there will be no actual cutting involved, but still will go under General Anestesia. Hopefully after this no more surgeries! I am a little aprehensive about all of this. Jackson has had surgery before, but it's always scary and heart wrenching to watch your child go through. He has had 2 surgeries in his little life, and has done very well with all of them, so we are praying theese will be just as good.
I also can not get over how happy Jackson is. He is such a good baby...and always has been. He has taken everything with stride and rarely complains. I wish I had half the resilance he has! I have continued to see answered prayers, and miracles happen within this precious little boy. I thank God every single time I see a smile, a frown, a tear, a poopy diaper, and for every single breath that Jackson takes... It's so hard to believe that he is 18 months old. I have watched him grow and develop in ways that not a lot of mothers get to experience, and although it is a hard road It makes every single day just that more special. He is alive, he is happy, he is healthy... Thank You God!
Thursday, March 31, 2011
1 Year HOME
It has been one year since we packed up Jackson (and all of his equipment) and strolled him out of the hospital for the first time. It was a surreal moment as the doors opened and the wind blew across Jackson's hair, a tear fell from my cheek and on to the ground. I remember as if it were yesterday. One of our favorite nurses Janet, helped us get Jackson down to the car. The sun was shining so bright and the air was crisp, but nothing could be felt but pure joy in that moment. I rode in the back seat with Jackson while Nick drove us home as a family for the first time.
Although we were excited beyond belief we were also just as scared. Here we were, taking our baby home for the first time after spending 6 months with a Doctor or Nurse just footsteps away. Now we were doing it all on our own... Well we must have done something right because Jackson is still here with us, and is better than ever! We have had our share of up's and down's, and a few short trips to the ER, but I would not change it for the world. Having a miracle like Jackson makes you realize how truly special it is to have a family. I would have never considered being a stay at home mom if it were not for Jackson!
We had a wonderful day today to celebrate. It is the simple things that make us happy. We went to Starbucks, and then came home and snuggled on the couch, although he is NOT a napper! I will never take for granted just being able to pick up Jackson and hold him whenever I want. We didn't get to hold him for the first time until he was 2 months old... in retrospect he was not even supposed to be out of my tummy yet, but it was the most heart breaking feeling ever. That first snuggle meant the world to me. He weighed a little over 2 pounds, and was still on a vent. The nurse placed him on my chest with his feet tucked down my undershirt. He felt so weightless... like I was holding nothing but a blanket. But inside that blanket was this precious gift, that I now can call my little chubby 24 pounder!
In pure Jackson style he decided to end the day with a Bang! I took him to my mom's house while I was leading our youth group in a bible study at church. She has watched him several times for us, but has never taken him anywhere without me. We decided that she was going to take Jackson to church with her, and drop him back off at home with Nick and I after her service was over. Like always, Jackson had other plans. His g-tube got pulled out while he was at church with my mom, and it was NOT going back in. So we ended up in the ER where they finally were able to get the tube placed after numerous attempts. He was a trooper though and was all smiles when we were on our way home. I think he just wanted to celebrate his 1 year homecoming with all of his friends at the hospital!
Tuesday, March 29, 2011
Spring Fever
Having a baby who is medically fragile AND a preemie is a doubble whammy...adding a trach to that makes the months of September through April seem like they will never end. The common cold can quickly turn in to RSV in a "fragile" child. RSV is what we have been avoiding since September by staying inside, not going anywhere but the doctor's office, and even limiting the number of visitors to our home. We have been to church a few times, but I dont need 2 hands to count how many times we have left our home since September. Luckly it WORKS. Becoming a "hermit" and avoiding public places has kept Jackson healthy! A few weeks ago he got his FIRST cold at 17 months old, and it was gone before we knew it! Unfortunately he gave it to me and it is still lingering.
We had a check up with a Developmental Pediatriction on Monday. We have only seen this Doctor one other time and that was 9 months ago. She said that Jackson is making progress, a bit on the slow side with muscle tone, but it is still progress. She said that his social skills are right on track, and he has great "fine motor" control (playing with toys in hands, holding his feet, waving bye-bye, etc.) We are working on "gross motor" control (sitting, bearing weight on his legs & arms, etc.) which seems to be the part that is lagging behind. It's not abnormal for preemies this early to have delays, and she wants to give him until the age of 3 before we start talking about a Cereberal Palsey diagnosis. He is not the "typical" 25 week preemie, and has every right to take his grand ol' time.
Jackson has been doing great with his weight gain weighing in at 23 pounds (a little too good) and has officially been switched to a BIG BOY formula! He seems to be tolerating it very well, and it even tastes good too (although he doesn't taste it when we feed him via G-tube). The biggest perk being we don't have to mix formula any more, or carry around ice packs trying to keep formula cold. He was put on a bit of a diet after gaining 7 pounds in 3 months, and extra weight is just going to make it harder for him to learn how to use his muscles!
Jackson has been doing great with his weight gain weighing in at 23 pounds (a little too good) and has officially been switched to a BIG BOY formula! He seems to be tolerating it very well, and it even tastes good too (although he doesn't taste it when we feed him via G-tube). The biggest perk being we don't have to mix formula any more, or carry around ice packs trying to keep formula cold. He was put on a bit of a diet after gaining 7 pounds in 3 months, and extra weight is just going to make it harder for him to learn how to use his muscles!
Waiting for the doctor...this smile didn't last long!
We got a dose of warm weather and enjoyed 4 days in a row outside! Unfortunately mother nature has a mind of her own, and it's now 36 degreese outside and we are back to playing in the house. Spring will come soon enough and we will be on a roll! We have LOTS of outdoor time to make up for!
Saturday, March 5, 2011
The "Aunts" Come Marching In!
Friday night we packed up and headed to Cicero! Jackson is 100% back to his happy self just in time to see Aunt Betsi & Aunt Susan! Wherever we go Jackson is inevitably the life of the party and Nick and I are just "escorts." :) After a fun filled evening we were sure Jackson would come home and tucker out. He fought his sleep the entire ride home, and crashed as soon as he was in his crib!
We are resting up for another big week next week. Jackson's Synagis shot is on Monday... only 1 more after this one, which means we have ALMOST made it through Jackson's 2nd RSV season! (fingers crossed). Then his therapies (PT, OT, and Speech) are back in full swing after taking 2 weeks off while being sick. Hopefully Jackson will be up to it (more like I hope I am up to it!)
We are resting up for another big week next week. Jackson's Synagis shot is on Monday... only 1 more after this one, which means we have ALMOST made it through Jackson's 2nd RSV season! (fingers crossed). Then his therapies (PT, OT, and Speech) are back in full swing after taking 2 weeks off while being sick. Hopefully Jackson will be up to it (more like I hope I am up to it!)
Jackson loved lounging with Aunt Susan. He was all smiles!
Aunt Betsi and Grandpa Jim move right in when Jackson offers up a free head massage!
His new favorite thing to do...daddy's too :)
Thursday, March 3, 2011
Therapy Jargon
It's been an interesting morning here at our house. Jackson slept through the night for the first time in 7 days! I really wish he could tell me when he is going to do that so I don't stay up all night waiting for him to wake up :) Jackson's OT came to the home as scheduled to do his therapy, and we talked about the dreaded but now almost unavoidable topic among his therapists... Cerebral Palsey. It's a very broad term for all different kinds of developmental delays and brain injuries. With Jackson being as premature as he was the risk is much greater. Even though he did not have any brain bleeds in the NICU, he still has some "preemie" damage to his brain, and we have always known and expected that. The hardest part is the unknown... Jackson is now 16 months (13 adjusted) and still not sitting on his own. After months of his therapists chalking it up as "prematurity" they are now saying that there is an issue that goes beyond just being a preemie.
We talked about how far Jackson has come... Don't get me wrong he has come SO far! And continues to hit his developmental milestones...just on his OWN time. The good news is that he has not regressed at all, and he is doing everything in "order." The therapists are concerned with his muscle tone. Most preemies have both high and low tone, especially in their arms, legs, and trunk from gravity working against them while they are still developing in the NICU. Over time with therapy these things start to resolve and muscles become more "trained." In Jackson's case the tone issues have shown little progress, epically in his trunk (abdomen). Our therapist has suggested that we talk with our doctor to see if we need to get a Neurologist's Opinion.
Because Jackson's background is a little more complex than most preemies there is a lot to take in to consideration when it comes to his development. He layed in a hospital bed for 6 months, with wires and tubes all around him. He was poked and prodded, nearly every touch was a "bad" touch. Then he came home with all of the wires, and tubes, and machines, and very sick lungs. He was on such a high dose of steroids for such a long time that his bone density and muscles were weakening with every dose.. Over time the dose was weaned, and he has now been steroid free for 6 months, although the Doctors said it could take up to a year for them to be completely out of his system. This is why the doctors do not seem to be concerned with his development at the time.
All I know is that no matter what Nick and I will love this little boy with everything that we have. His smile lights up the universe! Jackson is such a miracle, and is teaching us new things every day. I have mastered the art of how to stay awake for 2, 3, 4 days straight without even thinking about it. Nick and I have learned to love in a way unimaginable, and how to embrace the things that are out of our control. In Christ all things are possible. I will live by Faith and not by sight.
We talked about how far Jackson has come... Don't get me wrong he has come SO far! And continues to hit his developmental milestones...just on his OWN time. The good news is that he has not regressed at all, and he is doing everything in "order." The therapists are concerned with his muscle tone. Most preemies have both high and low tone, especially in their arms, legs, and trunk from gravity working against them while they are still developing in the NICU. Over time with therapy these things start to resolve and muscles become more "trained." In Jackson's case the tone issues have shown little progress, epically in his trunk (abdomen). Our therapist has suggested that we talk with our doctor to see if we need to get a Neurologist's Opinion.
Because Jackson's background is a little more complex than most preemies there is a lot to take in to consideration when it comes to his development. He layed in a hospital bed for 6 months, with wires and tubes all around him. He was poked and prodded, nearly every touch was a "bad" touch. Then he came home with all of the wires, and tubes, and machines, and very sick lungs. He was on such a high dose of steroids for such a long time that his bone density and muscles were weakening with every dose.. Over time the dose was weaned, and he has now been steroid free for 6 months, although the Doctors said it could take up to a year for them to be completely out of his system. This is why the doctors do not seem to be concerned with his development at the time.
All I know is that no matter what Nick and I will love this little boy with everything that we have. His smile lights up the universe! Jackson is such a miracle, and is teaching us new things every day. I have mastered the art of how to stay awake for 2, 3, 4 days straight without even thinking about it. Nick and I have learned to love in a way unimaginable, and how to embrace the things that are out of our control. In Christ all things are possible. I will live by Faith and not by sight.
Year ONE
One year ago...52 weeks ago...365 days ago...life as we knew it would change forever. At this time last year Nick and I were kissing Jackson good bye as he was rolled in to surgery. Our son was nearly 5 months old, and had never left his hospital bed. Decision making that ultimately effects the quality of life for your child was "new" to us. It was scary, sad, and a big realization that life as we know it would never be the same.
Tracheostomy.
We read all of the pamphlets, books, and instruction manuals on how to "care" for a trach... It didn't sound too challenging. What they don't prepare you for is the mental toll it takes on you caring for a "sick child."
I would love to type more and elaborate on the entire day, but it's making my head hurt just thinking about everything that went on. Some days it feels like yesterday... and other times it feels like an eternity. God Speed.
Tracheostomy.
We read all of the pamphlets, books, and instruction manuals on how to "care" for a trach... It didn't sound too challenging. What they don't prepare you for is the mental toll it takes on you caring for a "sick child."
Jackson on his way to surgery.
The procedure itself went very well. We were told it could take around 3 hours to perform the tracheostomy, g-tube placement, and ingunal hernia repair. Just an hour and half later Jackson was back in his room recovering.
Jackson, a few minutes after surgery
As much as I would like to forget that day and all of the emotions, tears, and anxiety that came along with it, Jackson would not be here today if it were not for this procedure. God was watching over him. His prognosis when we left the hospital was poor... he was sent home to be "comfortable"... He sure showed them! Today 1 year later his prognosis is Excellent.
I would love to type more and elaborate on the entire day, but it's making my head hurt just thinking about everything that went on. Some days it feels like yesterday... and other times it feels like an eternity. God Speed.
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