Dear John Paul,
It has been a while since I have written but rest assured, while my letters may be slow in coming, my kisses and love for you is not.
One week ago yesterday, you turned one year old. What an incredible milestone! At one year old, you have not yet cut your first tooth and yet you have defied the statistics. You are not a statistic John Paul. You are a child of a God, who loves you very much and who has big plans for you.
Most kids are pretty unaware of their first birthdays and I am sure you were no exception. Nonetheless, we did a pretty awesome job of celebrating....Aunt Katie kicked off the fun by sneaking in and decorating with streamers, balloons and a banner, then Miss Sheryl stopped by at around 8:30 with cupcakes, our friends the Hatches came to celebrate around 10:30 with donuts, and then you got a nice snuggle with Aunt Suzy. Then in the afternoon both Nanny and Pop-pop Aronne and Nanny and Pop-pop Kilner stopped by with cupcakes, then Fr. Michael Paris stopped by and gave you a birthday blessing along with Mrs. Sweatman and Baby Hugh and Kate! In your downtime, you enjoyed looking at all the pictures of your friends who wanted to wish you happy birthday with cool signs. You were pretty pooped by dinner time but you woke up in time for singing Happy Birthday with dad and the other kids and you thoroughly enjoyed your taste of chocolate frosting. For a grand finale, the Mr. and Mrs. Moss came over in the evening to wish you "Happy Birthday" also.
You also had some pretty amazing people celebrating your birthday in Rome. Your godmother, Aunt Mary, was in Rome on your birthday and was able to have an intention for you put on Pope Benedict XVI's private mass for the day before your birthday. She and Aunt Katie, with the help of your great uncle John also were able to have a picture of our family signed with a special birthday message by Don Javier Echevarria, the prelate of Opus Dei. Wow!
On the weekend, you got a taste for college life when you helped mommy "pin" Aunt Suzanne for the ceremony for finishing nursing school. Aunt Suzy wanted you especially to be there because she has come several times a week since you have come home and helped take care of you many nights into the wee hours. I was so glad you could be there to cheer her on. Then we went to Grandma and Grandpa Gabriel's house to celebrate the pinning and your birthday.
When we returned home from Grandma and Grandpa's, you had a visit from a wonderful priest from a local parish. He had such beautiful insight to your vocation. While all of us are called to have a priestly soul, you, John Paul have a priestly vocation. You may never be ordained, but I believe the mark on your soul is just as real. A priest is someone who offers sacrifice in order to make reparation for sin.
I want to tell you about something that happened not long before you were born. When I was about 8 months pregnant with you, someone that your father knows through business confided in him. He and his wife were about 12 weeks pregnant with their second child. But they had gotten some tests done that gave them some pretty bad news. The doctors told them that there was something wrong with their baby. He would never walk, he would never hit normal milestones, he would probably not live more than a couple of years. That baby's mommy and daddy were scared. Your father tried to encourage that daddy and we both prayed for them. But that mommy and daddy didn't know that God would carry them through the hardship and shine a beautiful light through their baby's life. They chose not to let that baby be born.
John Paul, your father and I have were very affected by this. We felt so sad that this baby didn't get a chance to show his mommy and daddy that God is the best daddy and that He would take care of them. I felt the need to make up for that injustice by doing a sacrifice...being 8 months pregnant, the first thing that popped in my head was to deliver you without an epidural. I had never done this before and as your due date drew closer and you got bigger and bigger...I started getting cold feet. I made a deal with God...if I go into labor on my own...I'll forgo the epidural, but if I get induced...I'll take the epidural....(truth be told, the doctor was already threatening induction). Well, I was induced. I got my epidural....and after a couple of hours I started feeling nauseated and had low blood pressure and you started having high blood pressure...we turned off the epidural. It was time to push...for two hours...finally we used a vacuum to move things along, but then your body didn't follow...the next moments turned into nurses pushing on my stomach and pulling and tearing. Your arm was broken, you couldn't breathe, you were bruised, barely moving...you were already a priest.
In the days and weeks that followed, as we slowly grasped what your diagnoses meant...it was clear that God wanted you as a special messenger of the value of a life that could not be measured in human terms. You are doing a better job than anyone with a voice could--you are the perfect messenger because you don't let true human weakness--sin and and self interest--cloud the view.
Well my letter has become longer than I intended but I want to thank you for being the fighter you are.
I love you more today,
Mom
Friday, December 14, 2012
Saturday, November 10, 2012
Dear John Paul,
It's 2:30 am and your dad just went to sleep. We are giving a new night nurse a try tonight so if all goes well, this may be one of the last early morning letters I write for a while.
Right now, you are doing great and sleeping beautifully however you have given me several reminders this week that this can change very quickly. On Wednesday, you gave me a pretty big scare. You plugged your trach and within seconds your oxygen saturation level dropped from the 90's to the 40's and all the color disappeared from your little body. We had to do an emergency trach change and it took you a few hours to fully regain your color. It was horrible. On Friday morning, you had a desat that dropped to 38 and while you recovered fast, you couldn't stay up and I worked on you for about half an hour before you were clear and capable of maintaining your saturation levels.
Unfortunately, from various experiences we have had over the last weeks and months, it has become clear that while the nursing help is fine when everything is going well, they are not equipped to be useful in critical situations and generally are not capable of assessing your needs accurately. Your dad and I have decided that the nursing care during the day is not worth what we sacrifice in constantly having a nurse present. We have decided to only have night nursing and forgo daytime nursing. I am excited to have a slightly more "normal" dynamic again.
You never cease to teach me, your dad and your siblings the basic principles of life...our need for faith, our reliance on God...our utter uselessness without Him....I would be a puddle on the floor right now if it weren't for the prayers of our friends and family...and the strength of your pretty amazing daddy.
I love you more today,
Mom
It's 2:30 am and your dad just went to sleep. We are giving a new night nurse a try tonight so if all goes well, this may be one of the last early morning letters I write for a while.
Right now, you are doing great and sleeping beautifully however you have given me several reminders this week that this can change very quickly. On Wednesday, you gave me a pretty big scare. You plugged your trach and within seconds your oxygen saturation level dropped from the 90's to the 40's and all the color disappeared from your little body. We had to do an emergency trach change and it took you a few hours to fully regain your color. It was horrible. On Friday morning, you had a desat that dropped to 38 and while you recovered fast, you couldn't stay up and I worked on you for about half an hour before you were clear and capable of maintaining your saturation levels.
Unfortunately, from various experiences we have had over the last weeks and months, it has become clear that while the nursing help is fine when everything is going well, they are not equipped to be useful in critical situations and generally are not capable of assessing your needs accurately. Your dad and I have decided that the nursing care during the day is not worth what we sacrifice in constantly having a nurse present. We have decided to only have night nursing and forgo daytime nursing. I am excited to have a slightly more "normal" dynamic again.
You never cease to teach me, your dad and your siblings the basic principles of life...our need for faith, our reliance on God...our utter uselessness without Him....I would be a puddle on the floor right now if it weren't for the prayers of our friends and family...and the strength of your pretty amazing daddy.
I love you more today,
Mom
Tuesday, November 6, 2012
Dear John Paul,
It is a rare, middle of the week, middle of the day note, but I had to stop to officially document.....you are officially 11 months old! Happy Birthday! You have had a great day. We had a birthday snuggle and you are on day 2 of your new diet with no issues to mention.
You saw the cardiologist last week and it was great news that your heart is doing great. We also were blessed to have kept power during Hurricane Sandy even though your pop-pop was good enough to let us borrow his generator just in case!
We love you little man!
Mom
It is a rare, middle of the week, middle of the day note, but I had to stop to officially document.....you are officially 11 months old! Happy Birthday! You have had a great day. We had a birthday snuggle and you are on day 2 of your new diet with no issues to mention.
You saw the cardiologist last week and it was great news that your heart is doing great. We also were blessed to have kept power during Hurricane Sandy even though your pop-pop was good enough to let us borrow his generator just in case!
We love you little man!
Mom
Saturday, October 27, 2012
Dear John Paul,
I am watching you sleep and I just want to tell you how beautiful you are. Each of your little parts are so incredibly sweet.
It's been a busy week and I don't feel like I have been able to spend as much quality time with you. I'm sitting 5 feet away from you, and I miss you.
The big news around here is that we are preparing for a really big storm--I have to admit that I'm pretty nervous. There's just so many things that need to be considered and I just have to pray to my guardian angel that everything will be remembered or realized before we have a problem.
I'm really not good with dealing with things in the future...I need to learn to just do what I can and to entrust the rest to our Lord...who takes care of things far better than I can anyway.
Nonetheless, I'll be glad when we are on the other side of this week...on Thursday, you'll have a busy day of getting your Flu and Synagis shots in the morning and then on to a neuromuscular cardiologist in the afternoon. Your other doctors thought it might be a good idea to see this doctor sooner than we were planning because you have had some strange, unexplained drops in your heart rate. The occupational therapist came this week to adjust your hand splints but she felt your hands were more swollen than she had seen before and didn't feel comfortable splinting. While I know we need to go to these appointments to get to the bottom this and make sure that you are ok...there is a part of me that would rather just curl up and hide and have someone come and get me and tell me when we're done.
But life isn't just riding out one storm after another....we can't be afraid to put our heart in it. We have to engage and know that the pain is worth what we gain in loving. John Paul, I love you and you are worth it.
I love you more today,
Mom
I am watching you sleep and I just want to tell you how beautiful you are. Each of your little parts are so incredibly sweet.
It's been a busy week and I don't feel like I have been able to spend as much quality time with you. I'm sitting 5 feet away from you, and I miss you.
The big news around here is that we are preparing for a really big storm--I have to admit that I'm pretty nervous. There's just so many things that need to be considered and I just have to pray to my guardian angel that everything will be remembered or realized before we have a problem.
I'm really not good with dealing with things in the future...I need to learn to just do what I can and to entrust the rest to our Lord...who takes care of things far better than I can anyway.
Nonetheless, I'll be glad when we are on the other side of this week...on Thursday, you'll have a busy day of getting your Flu and Synagis shots in the morning and then on to a neuromuscular cardiologist in the afternoon. Your other doctors thought it might be a good idea to see this doctor sooner than we were planning because you have had some strange, unexplained drops in your heart rate. The occupational therapist came this week to adjust your hand splints but she felt your hands were more swollen than she had seen before and didn't feel comfortable splinting. While I know we need to go to these appointments to get to the bottom this and make sure that you are ok...there is a part of me that would rather just curl up and hide and have someone come and get me and tell me when we're done.
But life isn't just riding out one storm after another....we can't be afraid to put our heart in it. We have to engage and know that the pain is worth what we gain in loving. John Paul, I love you and you are worth it.
I love you more today,
Mom
Saturday, October 6, 2012
Dear John Paul,
Happy Birthday! You have officially been a 10 month old for 3 hours now. I can't believe in two months you will have graced us with a whole year! You have been very busy since I last wrote you...you have attended your first of Joey and Liam's soccer games and even saw Joe score his first goal....we were going to try to go to a soccer game at the Height's today but it got cancelled so we went to a cool park that has ramps for all of the equipment. You got to sail on a pirate ship, explore a castle, take cover in a log fort...not to mention watch daddy swing on the monkey bars with all your siblings hanging on him! Tomorrow the boys have another game but it's usually a "see how the morning is going" kind of call so I'm not sure if you'll make it to this one or not.
I love you more today,
Mom
Happy Birthday! You have officially been a 10 month old for 3 hours now. I can't believe in two months you will have graced us with a whole year! You have been very busy since I last wrote you...you have attended your first of Joey and Liam's soccer games and even saw Joe score his first goal....we were going to try to go to a soccer game at the Height's today but it got cancelled so we went to a cool park that has ramps for all of the equipment. You got to sail on a pirate ship, explore a castle, take cover in a log fort...not to mention watch daddy swing on the monkey bars with all your siblings hanging on him! Tomorrow the boys have another game but it's usually a "see how the morning is going" kind of call so I'm not sure if you'll make it to this one or not.
I love you more today,
Mom
Saturday, September 22, 2012
Dear John Paul,
It's 5 am and we've been hanging out for about 3 hours now. Yesterday you had a great day! We had a picnic lunch in the back yard, music and story time with Madie and Ben, and the day ended with a long snuggle with daddy during "family movie night".
Last week we met with the doctor to discuss your MRI results. You have an increase in cerebral fluid in the ventricles of your brain. It seems that this fluid is replacing actual brain matter because you do not seem to be suffering from intercranial pressure. Those are some pretty big words for me, let alone a 9 month old baby so, another way of putting it is that, while we aren't exactly sure why, your brain images look a lot like an adult with dimensia. Your doctor expects you to have "moderate to severe cognitive delay". This is something that is not typically seen in kids with SMA but the truth is, kids with SMA don't typically get MRIs and you are dealing with a much more progressed type of SMA than most doctors are used to treating.
We are still working on getting consistant weekend nursing for both night and day shift so your dad and I have had a lot of quality time with you in the wee hours on Friday and Saturday nights. We are praying to get the help we need soon! With all of this beautiful fall weather starting---I am dying to get you out and about but it's hard to pull off when we don't get sleep.
This latest development with your brain being affected has been hard for me. It's not that I was really hoping you were going to go to Harvard and it certainly does not change how incredibly beautiful your life is...well...not exactly. Actually, it does change how beautiful your life is. In my humble and unbiased opinion, you just got a little more beautiful. You see, God is smart: He knows how easily pride can get in the way. Any little thing that we might attribute to human merit, we do. "He's so strong", "He's so smart", etc...but with you...we don't get distracted with all that. The power and beauty of His love is even more evident. You make it more clear that the true value of human life is not in the outer displays of human ability but rather the God-given power of the immortal soul to love and inspire love. So no, beauty is not the issue...I guess the reason this latest bit of information is hard for me is because it puts a little more guess work into what I can give you on a day to day, minute to minute basis...
Love you always,
Mom
It's 5 am and we've been hanging out for about 3 hours now. Yesterday you had a great day! We had a picnic lunch in the back yard, music and story time with Madie and Ben, and the day ended with a long snuggle with daddy during "family movie night".
Last week we met with the doctor to discuss your MRI results. You have an increase in cerebral fluid in the ventricles of your brain. It seems that this fluid is replacing actual brain matter because you do not seem to be suffering from intercranial pressure. Those are some pretty big words for me, let alone a 9 month old baby so, another way of putting it is that, while we aren't exactly sure why, your brain images look a lot like an adult with dimensia. Your doctor expects you to have "moderate to severe cognitive delay". This is something that is not typically seen in kids with SMA but the truth is, kids with SMA don't typically get MRIs and you are dealing with a much more progressed type of SMA than most doctors are used to treating.
We are still working on getting consistant weekend nursing for both night and day shift so your dad and I have had a lot of quality time with you in the wee hours on Friday and Saturday nights. We are praying to get the help we need soon! With all of this beautiful fall weather starting---I am dying to get you out and about but it's hard to pull off when we don't get sleep.
This latest development with your brain being affected has been hard for me. It's not that I was really hoping you were going to go to Harvard and it certainly does not change how incredibly beautiful your life is...well...not exactly. Actually, it does change how beautiful your life is. In my humble and unbiased opinion, you just got a little more beautiful. You see, God is smart: He knows how easily pride can get in the way. Any little thing that we might attribute to human merit, we do. "He's so strong", "He's so smart", etc...but with you...we don't get distracted with all that. The power and beauty of His love is even more evident. You make it more clear that the true value of human life is not in the outer displays of human ability but rather the God-given power of the immortal soul to love and inspire love. So no, beauty is not the issue...I guess the reason this latest bit of information is hard for me is because it puts a little more guess work into what I can give you on a day to day, minute to minute basis...
Love you always,
Mom
Sunday, September 2, 2012
Dear John Paul,
It has been busy around here to say the least. Joe and Liam have started school and have done a great job at the transition. Madie and Ben miss them a lot though and spend most of the morning asking me when it's time to go back to the bus stop to pick them up. You spent a couple of days this past week in the PICU (Pediatric Intensive Care Unit) trying to get your vent settings right...we started the process because you were just breathing crazy fast on your old settings and when we took you to see the pulmonologist, your CO2 was way too low. I think we are finally in a good place but it took several days even after you got out of the hospital before we could find the settings that were right for you.
On Thursday you had an MRI done as a follow-up test from your visit to the neuro-opthamologist. When he examined you he had noticed that your optic nerve was smaller than what he would typically expect and the MRI was ordered to give us a more comprehensive look. He also ordered a battery of blood work to screen for possible metabolic diseases to explain what he saw. So far the blood work has all been coming back normal but the MRI of your brain did show more of the story. You had an MRI when you were 3 days old and comparing the two images showed "a decrease in brain volume that will affect your cognitive abilities". The neuro-muscular doctor called to tell me this on Friday but your dad and I need to go and meet with her in person so she can tell us in more detail what the imaging means. She told me that this is most likely due to all of the frequent desaturations in oxygen that you had in your early days, maybe even from your traumatic birth. This is not something that is a typical symptom of SMA (Spinal Muscular Atrophy)...in fact, typically the one thing SMA folks really cling to--is that their brains are not affected.
I think this is God's way of telling me that I'm not detached enough. Your life, my life, every aspect of our lives is in His loving hands. I need to learn to let go. I so desperately try to be in control. It is so scary knowing that I have no control over what happens...especially in your life but really in all aspects of life. But the truth is...you are in far better hands when it is not me but our sweet Savior who is calling the shots. Hope is not having a firm grasp on the tangible good but rather trusting that God will bring us to a greater good than we even know how to imagine. Regardless of how the details of this new development play out...the daily life won't change...the kisses, the snuggles, the stories, the music will keep playing... Thank you for being my window to the heart of Christ.
I love you more today,
Mom
It has been busy around here to say the least. Joe and Liam have started school and have done a great job at the transition. Madie and Ben miss them a lot though and spend most of the morning asking me when it's time to go back to the bus stop to pick them up. You spent a couple of days this past week in the PICU (Pediatric Intensive Care Unit) trying to get your vent settings right...we started the process because you were just breathing crazy fast on your old settings and when we took you to see the pulmonologist, your CO2 was way too low. I think we are finally in a good place but it took several days even after you got out of the hospital before we could find the settings that were right for you.
On Thursday you had an MRI done as a follow-up test from your visit to the neuro-opthamologist. When he examined you he had noticed that your optic nerve was smaller than what he would typically expect and the MRI was ordered to give us a more comprehensive look. He also ordered a battery of blood work to screen for possible metabolic diseases to explain what he saw. So far the blood work has all been coming back normal but the MRI of your brain did show more of the story. You had an MRI when you were 3 days old and comparing the two images showed "a decrease in brain volume that will affect your cognitive abilities". The neuro-muscular doctor called to tell me this on Friday but your dad and I need to go and meet with her in person so she can tell us in more detail what the imaging means. She told me that this is most likely due to all of the frequent desaturations in oxygen that you had in your early days, maybe even from your traumatic birth. This is not something that is a typical symptom of SMA (Spinal Muscular Atrophy)...in fact, typically the one thing SMA folks really cling to--is that their brains are not affected.
I think this is God's way of telling me that I'm not detached enough. Your life, my life, every aspect of our lives is in His loving hands. I need to learn to let go. I so desperately try to be in control. It is so scary knowing that I have no control over what happens...especially in your life but really in all aspects of life. But the truth is...you are in far better hands when it is not me but our sweet Savior who is calling the shots. Hope is not having a firm grasp on the tangible good but rather trusting that God will bring us to a greater good than we even know how to imagine. Regardless of how the details of this new development play out...the daily life won't change...the kisses, the snuggles, the stories, the music will keep playing... Thank you for being my window to the heart of Christ.
I love you more today,
Mom
Tuesday, August 14, 2012
Dear John Paul, A little over a week ago, you turned 8 months old. Since then we have been busy getting ready for the Joe and Liam to start school, we have said goodbye to Lucy, the college girl who was helping us this summer and your Dad has gone on a business trip to Texas! We have been spoiled with Aunt Suzanne staying with us to help out this week while she's on break from nursing school.
In all honesty, I have been struggling a little over the past couple of weeks...it's been a while since you have been able to smile --a few months at least....and I am realizing how incredibly weak I am...how much I rely on those little human consolations or affirmations...I struggle with not being able to get a visible reaction from you when we play peek-a-boo, or play games, or read stories. I think I was having a little bit of a pity party. But today it struck me a different way. I know you would smile if you could, but how often does Christ shower us with graces and gifts that we fail to acknowledge out of pure ingratitude...how often, on a daily basis do I take Christ's sacrifice on the cross for granted...and yet He never stops giving, never stops loving...because He knows how weak I am. John Paul, it's o.k. that you lost your smile...you can have mine. I hope my smile will tell the world what a gift I think you are, to me, to your dad, to your siblings, to everyone who knows your story. No more pity parties...I love every step along this journey with you...you don't need to smile because your beautiful life inspires joy in so many.
Love you always,
Mom
In all honesty, I have been struggling a little over the past couple of weeks...it's been a while since you have been able to smile --a few months at least....and I am realizing how incredibly weak I am...how much I rely on those little human consolations or affirmations...I struggle with not being able to get a visible reaction from you when we play peek-a-boo, or play games, or read stories. I think I was having a little bit of a pity party. But today it struck me a different way. I know you would smile if you could, but how often does Christ shower us with graces and gifts that we fail to acknowledge out of pure ingratitude...how often, on a daily basis do I take Christ's sacrifice on the cross for granted...and yet He never stops giving, never stops loving...because He knows how weak I am. John Paul, it's o.k. that you lost your smile...you can have mine. I hope my smile will tell the world what a gift I think you are, to me, to your dad, to your siblings, to everyone who knows your story. No more pity parties...I love every step along this journey with you...you don't need to smile because your beautiful life inspires joy in so many.
Love you always,
Mom
Friday, July 27, 2012
Dear John Paul,
It has been busy around here as usual and we love having you in the mix! The biggest news is that we got your special stroller that will allow us to have all of your gear on it in a way that you can really get out and about. I can't wait to take you to the park, the zoo, Joe and Liam's soccer games....a lot of that may not happen until the fall when the weather is a little cooler--because you and 100 degree weather don't get along so well. The first day you had your stroller though, it was a beautiful day and we had a lovely dinner out on the patio in your stroller.
We also are in the process of getting you a cool bath chair that will make it easier to give you a full bath (instead of sponge baths)....you would think that something like a bath chair wouldn't be hard to get but I'm afraid everything is a process when it comes to getting things for you--it takes doctor's orders, letters of medical necessity, rejection from one insurance so the other will cover it, etc...I only have the stroller because I ditched protocol and just bought one second hand from another SMA family who's son outgrew his.
We saw your neuro-muscular doctor last week and she seemed to think that the issue with your optic nerve being small and pale could still be related to SMA-- even though there isn't really a precedence for it. The truth is, as she pointed out, you aren't presenting as a typical SMA kid does, so this might just be a unique SMA thing to you. Nonetheless, we need to rule out other possible things that could cause a small optic nerve so the doctor ordered an MRI and a battery of blood work to rule out some metabolic diseases (which is very unlikely). This will all happen sometime in August most likely.
The most important thing with this development is that we are able to learn what you can and can't see in order to help you enjoy being in the middle of our crazy family and feel loved.
I've been adding pictures of you from all of our summer fun to your slide show on this blog but I need to figure out a better way of showing off your absolute handsomeness!
Love you always,
Mom
It has been busy around here as usual and we love having you in the mix! The biggest news is that we got your special stroller that will allow us to have all of your gear on it in a way that you can really get out and about. I can't wait to take you to the park, the zoo, Joe and Liam's soccer games....a lot of that may not happen until the fall when the weather is a little cooler--because you and 100 degree weather don't get along so well. The first day you had your stroller though, it was a beautiful day and we had a lovely dinner out on the patio in your stroller.
We also are in the process of getting you a cool bath chair that will make it easier to give you a full bath (instead of sponge baths)....you would think that something like a bath chair wouldn't be hard to get but I'm afraid everything is a process when it comes to getting things for you--it takes doctor's orders, letters of medical necessity, rejection from one insurance so the other will cover it, etc...I only have the stroller because I ditched protocol and just bought one second hand from another SMA family who's son outgrew his.
We saw your neuro-muscular doctor last week and she seemed to think that the issue with your optic nerve being small and pale could still be related to SMA-- even though there isn't really a precedence for it. The truth is, as she pointed out, you aren't presenting as a typical SMA kid does, so this might just be a unique SMA thing to you. Nonetheless, we need to rule out other possible things that could cause a small optic nerve so the doctor ordered an MRI and a battery of blood work to rule out some metabolic diseases (which is very unlikely). This will all happen sometime in August most likely.
The most important thing with this development is that we are able to learn what you can and can't see in order to help you enjoy being in the middle of our crazy family and feel loved.
I've been adding pictures of you from all of our summer fun to your slide show on this blog but I need to figure out a better way of showing off your absolute handsomeness!
Love you always,
Mom
Friday, July 13, 2012
Dear John Paul,
It has been too long since I have written you and so much has happened in these weeks. We have made great headway on the nursing front and your father and I have been sleeping regularly which feels like a huge luxury! We have finally been blessed with a great team of nurses who are dedicated and in love with you.
On the 4th of July, you went on another out of home adventure to see lots of cousins and aunts and uncles at my cousin's farm in Leesburg. This year you stayed inside but I am determined that next year you'll get out to see the chickens and horses and of course the fireworks! We are rapidly moving in the right direction towards that goal as your first adapted stroller is in route to our house as I write you this. We also finally met in person some friends who have a daughter with SMA--who have a great set-up for keeping their daughter mobile--I am ready with a few deep cell batteries and an inverter to load onto your new stroller to make it a rolling PICU!
We have also had the pleasure of introducing you to your Great Grandma Gabriel, and some out of town friends who have not had a chance to see you--both the Dana and the Miggins families.
You have had several doctors appointments this month. We finally got you fitted for new hand and foot splints in order to prevent contractures and foot drop. We got to pick the design for your AFOs (Ankle, Foot, Orthotics)--I had a lot of choices but I had to go with the camo design because let's face it....you are one tough guy!
We also had two appointments today. The first appointment was your regular nutrition appointment and you are growing beautifully--very tall and perfectly plump:). I am starting to do research to investigate new diets for you but for now you are doing just great on your regular baby formula.
The second appointment you had today was with a neuro-opthomologist. Your father and I were very eager to investigate if there are ways to help improve your eye control and tracking because we were really hoping it would help you communicate in conjunction with technology in the future. We were disappointed to learn that you have trouble with your eyes that goes beyond simple weak muscles. The doctor dialated your eyes and saw that you have a smaller and paler optic nerve than is normal. He suspects that it could be both damage at the optic nerve as well as your brain. This doctor was one of the doctors who met you very early on when you were born and he remembered how well you could look around and focus then and notes the difference. We noticed the change initially sometime after your surgery but it's hard to know for sure when it started because prior to surgery you had so much obstructing your face that it was hard to tell what was going on.
It will take some more testing and possibly another MRI in order to try to get a better understanding of what caused this problem. The two options are: that while you were in the NICU at Children's, you had an event that deprived your brain of oxygen for long enough that you sustained damage (and we are not aware of any one event which could explain this scenario since any desat you had was resolved quickly no matter how severe), OR you could have a secondary condition which would explain this issue. Neither explanation seems especially probable to the doctor we spoke to today so it will likely take some time and testing before things become more clear--both the cause and the severity of the problem. We do know that you can see, but that your vision is impaired to some degree is almost definite. It seems that with this complication it is unlikely that your ability to track will improve. The doctor encouraged us to use bold contrasting colors for eye stimulation and continue to just love on you with family and friends....this we can do!
John Paul, while your father and I are saddened that this new development will make it harder for you to do everything we would like...it will not deter us from fighting every day....from finding new ways to love you and help you feel that love.
As always, I love you so,
Mom
It has been too long since I have written you and so much has happened in these weeks. We have made great headway on the nursing front and your father and I have been sleeping regularly which feels like a huge luxury! We have finally been blessed with a great team of nurses who are dedicated and in love with you.
On the 4th of July, you went on another out of home adventure to see lots of cousins and aunts and uncles at my cousin's farm in Leesburg. This year you stayed inside but I am determined that next year you'll get out to see the chickens and horses and of course the fireworks! We are rapidly moving in the right direction towards that goal as your first adapted stroller is in route to our house as I write you this. We also finally met in person some friends who have a daughter with SMA--who have a great set-up for keeping their daughter mobile--I am ready with a few deep cell batteries and an inverter to load onto your new stroller to make it a rolling PICU!
We have also had the pleasure of introducing you to your Great Grandma Gabriel, and some out of town friends who have not had a chance to see you--both the Dana and the Miggins families.
You have had several doctors appointments this month. We finally got you fitted for new hand and foot splints in order to prevent contractures and foot drop. We got to pick the design for your AFOs (Ankle, Foot, Orthotics)--I had a lot of choices but I had to go with the camo design because let's face it....you are one tough guy!
We also had two appointments today. The first appointment was your regular nutrition appointment and you are growing beautifully--very tall and perfectly plump:). I am starting to do research to investigate new diets for you but for now you are doing just great on your regular baby formula.
The second appointment you had today was with a neuro-opthomologist. Your father and I were very eager to investigate if there are ways to help improve your eye control and tracking because we were really hoping it would help you communicate in conjunction with technology in the future. We were disappointed to learn that you have trouble with your eyes that goes beyond simple weak muscles. The doctor dialated your eyes and saw that you have a smaller and paler optic nerve than is normal. He suspects that it could be both damage at the optic nerve as well as your brain. This doctor was one of the doctors who met you very early on when you were born and he remembered how well you could look around and focus then and notes the difference. We noticed the change initially sometime after your surgery but it's hard to know for sure when it started because prior to surgery you had so much obstructing your face that it was hard to tell what was going on.
It will take some more testing and possibly another MRI in order to try to get a better understanding of what caused this problem. The two options are: that while you were in the NICU at Children's, you had an event that deprived your brain of oxygen for long enough that you sustained damage (and we are not aware of any one event which could explain this scenario since any desat you had was resolved quickly no matter how severe), OR you could have a secondary condition which would explain this issue. Neither explanation seems especially probable to the doctor we spoke to today so it will likely take some time and testing before things become more clear--both the cause and the severity of the problem. We do know that you can see, but that your vision is impaired to some degree is almost definite. It seems that with this complication it is unlikely that your ability to track will improve. The doctor encouraged us to use bold contrasting colors for eye stimulation and continue to just love on you with family and friends....this we can do!
John Paul, while your father and I are saddened that this new development will make it harder for you to do everything we would like...it will not deter us from fighting every day....from finding new ways to love you and help you feel that love.
As always, I love you so,
Mom
Tuesday, June 26, 2012
Dear John Paul,
Happy feast day! Today is the feast of St. Josemaria, your confirmation saint. We chose Saint Josemaria as your confirmation saint because your dad and I have a great devotion to him--his teachings about sanctifying all of the little things that you encounter in your life--and the big things too...helps us to see value in suffering and even joy in suffering and to appreciate everything as an opportunity to love and experience God's love for us. We hope that as you grow, you will benefit from his beautiful insights the way we do.
This week we have been enjoying having you in a new day bed set up in the family room during the days..I'll post pictures and video soon of all the kids enjoying being nice and close to you--they love to climb up on the bed and lay right next to you. This week Ben has been practising feeling your chest to see if you are "junky" and Madie is already a pro--she even informed the nurses, accurately when you needed to be suctioned.
On Father's Day you ventured out and visited at Nona and Pop-pop at there house--you were in heaven, hanging out in your Pop-pop's arms. We are hoping to venture to Leesburg to the for the 4th of July this year for their annual celebration--I really love figuring out different things we can do together as a family.
Thank you for helping me make the most of every day,
Love you so,
Mom
Happy feast day! Today is the feast of St. Josemaria, your confirmation saint. We chose Saint Josemaria as your confirmation saint because your dad and I have a great devotion to him--his teachings about sanctifying all of the little things that you encounter in your life--and the big things too...helps us to see value in suffering and even joy in suffering and to appreciate everything as an opportunity to love and experience God's love for us. We hope that as you grow, you will benefit from his beautiful insights the way we do.
This week we have been enjoying having you in a new day bed set up in the family room during the days..I'll post pictures and video soon of all the kids enjoying being nice and close to you--they love to climb up on the bed and lay right next to you. This week Ben has been practising feeling your chest to see if you are "junky" and Madie is already a pro--she even informed the nurses, accurately when you needed to be suctioned.
On Father's Day you ventured out and visited at Nona and Pop-pop at there house--you were in heaven, hanging out in your Pop-pop's arms. We are hoping to venture to Leesburg to the for the 4th of July this year for their annual celebration--I really love figuring out different things we can do together as a family.
Thank you for helping me make the most of every day,
Love you so,
Mom
Friday, June 15, 2012
Dear John Paul,
This has been a very busy week with lots of positive developments. We have started with our new agency and while not everyone is trained in yet and there are already some who haven't worked out, we have made huge progress in that we have a wonderful nurse to cover weekday nights for us now. Your father and I actually slept three nights in a row this week...we feel very spoiled!!! We will train in the weekend night nurse for the first time tonight so... here's hoping!
John Paul, when we face your life, it is very natural to start thinking about eternal life also. Even though Jesus tries to explain in parables in the Gospels how wonderful heaven is (the pearl of great price, the wedding feast, etc..), I know I am often tempted to value it, only in lieu of the alternative. For some reason, I have a hard time getting excited about the unknown. I know I have a long way to go, and when I truly love our Lord as I should, have a true friendship with Him, then I will really desire heaven for the reasons I should.
That being said, I think you have helped me take steps towards that goal. While it is certainly not as noble as love of God, it is better than fear of hell: I can't wait to go to heaven because I know that in heaven...there is no illness, infirmity, no SMA. I can't wait to see you struttin' your stuff in a totally healthy body.
My experience with you has also given me hints at how awesome heaven will be for another reason. I believe in the saying "you get what you pay for." Christ payed a huge price in order for us to get to heaven--he died on the cross in order to make heaven a possibility for us. The catch is that Christ expects us to do the same in order to accept his offer of heaven...John Paul, your cross is not small...just like all of us, Jesus is asking you to lay down your life, to co-redeem...but since you get what you pay for, if you agree to offer your suffering to God, to make up for sins--even ones you didn't commit (maybe ones your mom did)...not only will you do so much good with your amazing life here on earth, your life in heaven will be better than you or I could imagine...better than being an Olympic athlete, better than all the things you wish you could do here on earth combined.
So how do you do this work of offering your suffering to God? Pick the things that you don't like--maybe suctioning or chest PT or nebulizer treatments and when it's time for one of those things...smile (even if no one else can see it) and think to yourself, "This one's for you Jesus--to help my brother Ben get to heaven, or Joe, or Mom." And then, you will have done work that is more valuable than any billionare CEO has ever done.
John Paul, I'm writing you this when you are only 6 months old and I am under no illusion that you could do this now....but I pray that the day will come that you can read this, and if you are old enough to read this, you will be old enough to do this....and since we never know what opportunities we will have in the future, and since this is the most important lesson I can teach you...I figured I better get started early.
As always, I love you with all of my heart,
Mom
This has been a very busy week with lots of positive developments. We have started with our new agency and while not everyone is trained in yet and there are already some who haven't worked out, we have made huge progress in that we have a wonderful nurse to cover weekday nights for us now. Your father and I actually slept three nights in a row this week...we feel very spoiled!!! We will train in the weekend night nurse for the first time tonight so... here's hoping!
John Paul, when we face your life, it is very natural to start thinking about eternal life also. Even though Jesus tries to explain in parables in the Gospels how wonderful heaven is (the pearl of great price, the wedding feast, etc..), I know I am often tempted to value it, only in lieu of the alternative. For some reason, I have a hard time getting excited about the unknown. I know I have a long way to go, and when I truly love our Lord as I should, have a true friendship with Him, then I will really desire heaven for the reasons I should.
That being said, I think you have helped me take steps towards that goal. While it is certainly not as noble as love of God, it is better than fear of hell: I can't wait to go to heaven because I know that in heaven...there is no illness, infirmity, no SMA. I can't wait to see you struttin' your stuff in a totally healthy body.
My experience with you has also given me hints at how awesome heaven will be for another reason. I believe in the saying "you get what you pay for." Christ payed a huge price in order for us to get to heaven--he died on the cross in order to make heaven a possibility for us. The catch is that Christ expects us to do the same in order to accept his offer of heaven...John Paul, your cross is not small...just like all of us, Jesus is asking you to lay down your life, to co-redeem...but since you get what you pay for, if you agree to offer your suffering to God, to make up for sins--even ones you didn't commit (maybe ones your mom did)...not only will you do so much good with your amazing life here on earth, your life in heaven will be better than you or I could imagine...better than being an Olympic athlete, better than all the things you wish you could do here on earth combined.
So how do you do this work of offering your suffering to God? Pick the things that you don't like--maybe suctioning or chest PT or nebulizer treatments and when it's time for one of those things...smile (even if no one else can see it) and think to yourself, "This one's for you Jesus--to help my brother Ben get to heaven, or Joe, or Mom." And then, you will have done work that is more valuable than any billionare CEO has ever done.
John Paul, I'm writing you this when you are only 6 months old and I am under no illusion that you could do this now....but I pray that the day will come that you can read this, and if you are old enough to read this, you will be old enough to do this....and since we never know what opportunities we will have in the future, and since this is the most important lesson I can teach you...I figured I better get started early.
As always, I love you with all of my heart,
Mom
Saturday, June 9, 2012
Dear John Paul,
A belated happy birthday! I intended to write you a letter on the day you turned 6 months old, but things got a little crazy and I spent the day hanging out with you in the PICU at Children's instead.
I had been talking with ENT (Ear, Nose, Throat) doctors a couple of days before you went in because we had been seeing small amounts of blood in from your nose, mouth and trach...while they weren't too concerned, since it didn't seem to be resolving they had us come in through the emergency room so they could take a look. They did see some dryness and irritation but felt like you could heal at home and we packed up to go. On the way home however, you started to desat to the 80s and we were suctioning more blood than we had previously seen. Your dad and I weren't comfortable going home because we have seen you escalate pretty badly under similar circumstances, so we turned around and went back to the ER. Once we got to the ER we had to do an emergency trach change because your trach was so filled with blood that the ENT doctors couldn't see anything with the scope. Once they could see...they didn't see anything that was actively bleeding and they were concerned that the blood was coming from lower down in your lungs. You were immediately admitted and treated on antibiotics while they started running all the tests, x-rays, and cultures in order to rule out pneumonia or tracheitis.
Pretty quickly, the bleeding seemed to subside and little by little, all of the test came back negative. The morning after your first night in the PICU however, you decided to show the nurses, respiratory therapists and doctors what you are capable of...you started to desat and then during suctioning and bagging, your heart rate started jumping all over the place...going as low as 78 bpm...then every time we tried reconnecting you to your home vent...your would desat all over again...we ended up doing another emergency trach change which turned out clean and you started maintaining your stats consistently between 93-96 which is not great for you. We switched you to the hospital vent and mysteriously you started doing much better. The rest of your stay was uneventful and we got to bring you home the following day.
While you were in the hospital, you got visits from several of your old NICU nurses who couldn't believe how big you have gotten...I finally measured you against your big brother, Ben: at 6 months, you are 29 inches long...at 2 years old Ben is 33 inches long! You are not far behind at all!
On Monday, we are starting our 4th nursing agency and meanwhile your father and I are actively working on setting up ways to get you higher level nurses. I have been so humbled by your dad's unfailing dedication to getting you the care you need. He has led the way as your protector and advocate--not accepting the status quo. He is amazingly optimistic and innovative--100% motivated by his love for you.
Love you so,
Mom
A belated happy birthday! I intended to write you a letter on the day you turned 6 months old, but things got a little crazy and I spent the day hanging out with you in the PICU at Children's instead.
I had been talking with ENT (Ear, Nose, Throat) doctors a couple of days before you went in because we had been seeing small amounts of blood in from your nose, mouth and trach...while they weren't too concerned, since it didn't seem to be resolving they had us come in through the emergency room so they could take a look. They did see some dryness and irritation but felt like you could heal at home and we packed up to go. On the way home however, you started to desat to the 80s and we were suctioning more blood than we had previously seen. Your dad and I weren't comfortable going home because we have seen you escalate pretty badly under similar circumstances, so we turned around and went back to the ER. Once we got to the ER we had to do an emergency trach change because your trach was so filled with blood that the ENT doctors couldn't see anything with the scope. Once they could see...they didn't see anything that was actively bleeding and they were concerned that the blood was coming from lower down in your lungs. You were immediately admitted and treated on antibiotics while they started running all the tests, x-rays, and cultures in order to rule out pneumonia or tracheitis.
Pretty quickly, the bleeding seemed to subside and little by little, all of the test came back negative. The morning after your first night in the PICU however, you decided to show the nurses, respiratory therapists and doctors what you are capable of...you started to desat and then during suctioning and bagging, your heart rate started jumping all over the place...going as low as 78 bpm...then every time we tried reconnecting you to your home vent...your would desat all over again...we ended up doing another emergency trach change which turned out clean and you started maintaining your stats consistently between 93-96 which is not great for you. We switched you to the hospital vent and mysteriously you started doing much better. The rest of your stay was uneventful and we got to bring you home the following day.
While you were in the hospital, you got visits from several of your old NICU nurses who couldn't believe how big you have gotten...I finally measured you against your big brother, Ben: at 6 months, you are 29 inches long...at 2 years old Ben is 33 inches long! You are not far behind at all!
On Monday, we are starting our 4th nursing agency and meanwhile your father and I are actively working on setting up ways to get you higher level nurses. I have been so humbled by your dad's unfailing dedication to getting you the care you need. He has led the way as your protector and advocate--not accepting the status quo. He is amazingly optimistic and innovative--100% motivated by his love for you.
Love you so,
Mom
Saturday, June 2, 2012
Dear John Paul,
This morning when the one nurse that we had left arrived, I decided to lie down to try to rest a little. An hour and a half later I woke to the sound of the suction machine going and I decided to check on you. By the time I got to you, your oxygen level was 58. It is supposed to be over 95. I pumped up your oxygen, cleared a huge occlusion in your trach, and fired the third nursing agency we have had in the three months you have been home. You recovered well and the rest of day went fine. Your sight therapist from the county came by and was really impressed with how attentive you are to story time. She had some great ideas to help incorporate the other kids into bringing the stories to life for you with toys and puppets. It will be great! Later in the afternoon we hung out in the basement as tornado warnings were being tossed around...although it turned out to be nothing, better safe than sorry.
As I finish this note, the sun is starting to rise and Ben is talking in his crib...today we'll do a bath and teach more family how to take care of you.
Love you so,
Mom
This morning when the one nurse that we had left arrived, I decided to lie down to try to rest a little. An hour and a half later I woke to the sound of the suction machine going and I decided to check on you. By the time I got to you, your oxygen level was 58. It is supposed to be over 95. I pumped up your oxygen, cleared a huge occlusion in your trach, and fired the third nursing agency we have had in the three months you have been home. You recovered well and the rest of day went fine. Your sight therapist from the county came by and was really impressed with how attentive you are to story time. She had some great ideas to help incorporate the other kids into bringing the stories to life for you with toys and puppets. It will be great! Later in the afternoon we hung out in the basement as tornado warnings were being tossed around...although it turned out to be nothing, better safe than sorry.
As I finish this note, the sun is starting to rise and Ben is talking in his crib...today we'll do a bath and teach more family how to take care of you.
Love you so,
Mom
Friday, June 1, 2012
Dear John Paul,
Well, your dad and Joe, Liam and Madie left early Thursday morning and are in Michigan for your Uncle Joey's wedding. It was so sweet to see the kids saying goodby to you and reassuring you that they'd miss you and be back very soon. I know it was very hard for your dad to leave you. You are so loved.
I'm spoiled to have both Aunt Suzie and Aunt Monica here to help me while your dad is away. Sadly, this is especially necessary because we have been having major issues with getting nursing help. Despite the miracle of being awarded 20 hours of nursing a day by Medicaid, the agency has not been able to staff anywhere close to this. In the last week we have had a total of 29 hours of nursing...none of which have been at night. I think the hardest part of this arrangement is being so tired that I haven't been able to do a lot of the fun things we do with you--getting to hold, massage, play and read stories. I have craigslist ads out to do my own recruiting and will be interviewing one potential nurse this weekend. I can't wait to settle into a more functional routine.
Love you so,
Mom
Well, your dad and Joe, Liam and Madie left early Thursday morning and are in Michigan for your Uncle Joey's wedding. It was so sweet to see the kids saying goodby to you and reassuring you that they'd miss you and be back very soon. I know it was very hard for your dad to leave you. You are so loved.
I'm spoiled to have both Aunt Suzie and Aunt Monica here to help me while your dad is away. Sadly, this is especially necessary because we have been having major issues with getting nursing help. Despite the miracle of being awarded 20 hours of nursing a day by Medicaid, the agency has not been able to staff anywhere close to this. In the last week we have had a total of 29 hours of nursing...none of which have been at night. I think the hardest part of this arrangement is being so tired that I haven't been able to do a lot of the fun things we do with you--getting to hold, massage, play and read stories. I have craigslist ads out to do my own recruiting and will be interviewing one potential nurse this weekend. I can't wait to settle into a more functional routine.
Love you so,
Mom
Tuesday, May 29, 2012
Dear John Paul,
Today was a quiet day. Your father and I spent the morning in your room, brainstorming about how to change the world. This is the thing: Right now, society does not recognize how valuable your life is and therefore does not have the systems in place to support caring for someone with your needs. This is a true poverty...and it will not change unless someone demands a change and shows how beautiful your life is. You are a gift not only to us, your family...but to all of society....you are a teacher of things that the world desperately needs an education in...a teacher of true love, of the value of suffering, of patience and perseverance. It may take time and definitely will take prayer, but little by little, one person at a time, you will make a difference and will help the next child who needs as much help as you do.
Both your father and I got to hold you today and while your were with your dad...you did something pretty cool: you initiated moving your head just slightly, several times. It was awesome! We are so proud of you.
Love you always,
Mom
Today was a quiet day. Your father and I spent the morning in your room, brainstorming about how to change the world. This is the thing: Right now, society does not recognize how valuable your life is and therefore does not have the systems in place to support caring for someone with your needs. This is a true poverty...and it will not change unless someone demands a change and shows how beautiful your life is. You are a gift not only to us, your family...but to all of society....you are a teacher of things that the world desperately needs an education in...a teacher of true love, of the value of suffering, of patience and perseverance. It may take time and definitely will take prayer, but little by little, one person at a time, you will make a difference and will help the next child who needs as much help as you do.
Both your father and I got to hold you today and while your were with your dad...you did something pretty cool: you initiated moving your head just slightly, several times. It was awesome! We are so proud of you.
Love you always,
Mom
Saturday, May 26, 2012
Dear John Paul,
Today (and by today I mean Friday), was one of those totally crazy days...Ben woke up with a fever of 102 and Thursday evening the air conditioning ceased working....you got to hang out in the spare room that Pop-pop built in the basement for most of the day in order to stay cool and I probably just looked like a chicken with my head cut off, constantly running between floors...we had visits from Aunt Katie and the Carney cousins, one of my good friends, Mrs. Arguello...aunt Suzanne was here helping out, two friends who are nurses who want to get to know you also came by...not to mention the AC repair man!
By the end of the day the AC was up and running again but as of 10 Friday night, Ben's fever is still hanging out so I'm praying that he kicks it during the night and that he didn't give it to you because he was definitely giving you kisses during the day on Thursday. We may just keep you in your room for isolation purposes tomorrow, just to be on the safe side.
We continue having issues getting a consistent team of nurses...for the most part the most recent nurses have seemed to have decent ability...just not a decent level of commitment. Next week, Dad, Joey, Liam and Madie are going on a road trip to Michigan for uncle Joey's wedding. Thank goodness for aunt Suzanne who is awesome at all of your care....today she even changed out your circuit and did your trach change. Suzanne is planning on coming to help take the edge off the night shift while Dad is away. Aunt Monica is also coming down to help entertain Ben while everyone is gone.
I love watching you sleep so peacefully and I hope tomorrow will be quiet enough for us to hang out and read stories, snuggle, do a little massage....
love you so,
Mom
Today (and by today I mean Friday), was one of those totally crazy days...Ben woke up with a fever of 102 and Thursday evening the air conditioning ceased working....you got to hang out in the spare room that Pop-pop built in the basement for most of the day in order to stay cool and I probably just looked like a chicken with my head cut off, constantly running between floors...we had visits from Aunt Katie and the Carney cousins, one of my good friends, Mrs. Arguello...aunt Suzanne was here helping out, two friends who are nurses who want to get to know you also came by...not to mention the AC repair man!
By the end of the day the AC was up and running again but as of 10 Friday night, Ben's fever is still hanging out so I'm praying that he kicks it during the night and that he didn't give it to you because he was definitely giving you kisses during the day on Thursday. We may just keep you in your room for isolation purposes tomorrow, just to be on the safe side.
We continue having issues getting a consistent team of nurses...for the most part the most recent nurses have seemed to have decent ability...just not a decent level of commitment. Next week, Dad, Joey, Liam and Madie are going on a road trip to Michigan for uncle Joey's wedding. Thank goodness for aunt Suzanne who is awesome at all of your care....today she even changed out your circuit and did your trach change. Suzanne is planning on coming to help take the edge off the night shift while Dad is away. Aunt Monica is also coming down to help entertain Ben while everyone is gone.
I love watching you sleep so peacefully and I hope tomorrow will be quiet enough for us to hang out and read stories, snuggle, do a little massage....
love you so,
Mom
Tuesday, May 22, 2012
Dear John Paul,
Today is the fourth consecutive day that your father and I have been pulling the night shift, either training nurses or covering for no shows. Typically, since your dad is more of a night person--he stays up for the first shift until 2 or 2:30am and that's when I start my day.
I have to tell you, your dad is a pretty amazing person. I am so blessed to have him as my husband and head of our family. He works tirelessly, not only providing for our family's material needs--but is 100% invested in your care and in leading our family with his positive attitude and supernatural outlook. He is constantly brainstorming creative ways to "beat the system" of established ways to get the help we need. He is always looking to give me a break when he has slept less than I have and pushing forward to be present to the other kids as well.
I can't imagine being on this journey with anybody else.
More and more of your extended family is getting trained up to learn how to care for you so that they can help give us a break when the nurses call out unexpectedly. Grandma Gabriel came today and is planning on coming regularly to train, Aunt Suzanne is already pretty much a pro, and your Godmother, Aunt Mary is hoping to start training too.
This is a quiet week on the appointments front, but I am looking forward to learning the rest of your body with the massage therapist of Wednesday. Right now I only know how to do your face and legs but should learn the rest then.
As always, I love you so,
Mom
Today is the fourth consecutive day that your father and I have been pulling the night shift, either training nurses or covering for no shows. Typically, since your dad is more of a night person--he stays up for the first shift until 2 or 2:30am and that's when I start my day.
I have to tell you, your dad is a pretty amazing person. I am so blessed to have him as my husband and head of our family. He works tirelessly, not only providing for our family's material needs--but is 100% invested in your care and in leading our family with his positive attitude and supernatural outlook. He is constantly brainstorming creative ways to "beat the system" of established ways to get the help we need. He is always looking to give me a break when he has slept less than I have and pushing forward to be present to the other kids as well.
I can't imagine being on this journey with anybody else.
More and more of your extended family is getting trained up to learn how to care for you so that they can help give us a break when the nurses call out unexpectedly. Grandma Gabriel came today and is planning on coming regularly to train, Aunt Suzanne is already pretty much a pro, and your Godmother, Aunt Mary is hoping to start training too.
This is a quiet week on the appointments front, but I am looking forward to learning the rest of your body with the massage therapist of Wednesday. Right now I only know how to do your face and legs but should learn the rest then.
As always, I love you so,
Mom
Saturday, May 19, 2012
Dear John Paul,
It's almost 3:30 in the morning and I have been up with you for almost an hour. Yesterday you met your eye therapist through the county Infants and Toddlers program. She was great and had all sorts of great suggestions for fun things for you to look at. I gave you your massage in the afternoon and we got to snuggle during your afternoon meal. After dinner, I went to bed with so I could get up early and dad and aunt Suzy gave you a bath and did trach care.
You have been going through trach suction catheters like crazy this month! We have an allowance of 300 per month and we ran out out of those a long time ago. I bought 150 online and we are down to our last 15 of those so we are having to reuse them to get us to Monday when more are coming...and even those are being delivered a little early.
Even though you have been so congested in the last couple of weeks, you have been doing great...satting well and having great alert time.
The last few days have been very busy with training new nurses and trying to coordinate various doctors to get appointments and orders for your splints, a Kid Kart (handicap stroller), begging for more catheters, transition to Model Waiver, etc....I'm looking forward to having some of the administrative craziness to slow down so that I can focus more on trying to do more fun things with you.
Earlier this week you had a great visit from Nanny and Pop-pop Aronne. You and Pop-pop had a nice long talk, hanging out on the floor. We have had several beautiful days and you did have a lovely patio dinner the other day. I'm hoping to have some more outdoor time with you this weekend.
Love you so,
Mom
It's almost 3:30 in the morning and I have been up with you for almost an hour. Yesterday you met your eye therapist through the county Infants and Toddlers program. She was great and had all sorts of great suggestions for fun things for you to look at. I gave you your massage in the afternoon and we got to snuggle during your afternoon meal. After dinner, I went to bed with so I could get up early and dad and aunt Suzy gave you a bath and did trach care.
You have been going through trach suction catheters like crazy this month! We have an allowance of 300 per month and we ran out out of those a long time ago. I bought 150 online and we are down to our last 15 of those so we are having to reuse them to get us to Monday when more are coming...and even those are being delivered a little early.
Even though you have been so congested in the last couple of weeks, you have been doing great...satting well and having great alert time.
The last few days have been very busy with training new nurses and trying to coordinate various doctors to get appointments and orders for your splints, a Kid Kart (handicap stroller), begging for more catheters, transition to Model Waiver, etc....I'm looking forward to having some of the administrative craziness to slow down so that I can focus more on trying to do more fun things with you.
Earlier this week you had a great visit from Nanny and Pop-pop Aronne. You and Pop-pop had a nice long talk, hanging out on the floor. We have had several beautiful days and you did have a lovely patio dinner the other day. I'm hoping to have some more outdoor time with you this weekend.
Love you so,
Mom
Tuesday, May 15, 2012
Dear John Paul,
Big news today....MD Model Waiver program approved 20 hours a day 7 days a week of nursing care. Everyone was preparing me for far less so I will happily chalk this up to a miracle. You have so many people praying for all of your needs that I have no doubt their prayers were heard. Tomorrow, you will officially be "on the waiver" and switch to our 3rd nursing agency....so the up all night training new nurses routine resumes after tonight as well. Now we have to pray that your guardian angel is permitted to take the form of an amazing nurse....or, even better, four nurses.
On Monday, we went to Children's for a GI/nutritionist check-up. You did great and weighed in at a wopping 17.5 lbs!!! They even weighed you twice just to be sure. Your big brother Ben, who will be 2 very soon weighs 21 lbs so in another month I won't be shocked if you have caught up with him!
We also popped by the NICU for a visit a several of your favorite nurses were thrilled to see you and how well you were doing. We also bumped into one of the doctors who was very pessimistic about your prognosis and had even suggested not giving you a G-tube to feed you. She was amazed at how well you are doing. We told her about your progress and the study drugs...we hope the next time she diagnoses someone with SMA, she offers a little more hope. We are so grateful that early in our journey, we were put in touch with so many great families who are fighting for their children.
Your dad and I are constantly thinking about how we can best give you stimulation given your lack of ability to move...your uncle Alex came up with the great idea of setting up a fish tank for you to watch....I thought this was brilliant! I have to admit....with the exception of my children, I'm not very good at keeping other living things....well...alive. But I will definitely try because I think you would really love some goldfish at least for starters!
Love you so,
Mom
Big news today....MD Model Waiver program approved 20 hours a day 7 days a week of nursing care. Everyone was preparing me for far less so I will happily chalk this up to a miracle. You have so many people praying for all of your needs that I have no doubt their prayers were heard. Tomorrow, you will officially be "on the waiver" and switch to our 3rd nursing agency....so the up all night training new nurses routine resumes after tonight as well. Now we have to pray that your guardian angel is permitted to take the form of an amazing nurse....or, even better, four nurses.
On Monday, we went to Children's for a GI/nutritionist check-up. You did great and weighed in at a wopping 17.5 lbs!!! They even weighed you twice just to be sure. Your big brother Ben, who will be 2 very soon weighs 21 lbs so in another month I won't be shocked if you have caught up with him!
We also popped by the NICU for a visit a several of your favorite nurses were thrilled to see you and how well you were doing. We also bumped into one of the doctors who was very pessimistic about your prognosis and had even suggested not giving you a G-tube to feed you. She was amazed at how well you are doing. We told her about your progress and the study drugs...we hope the next time she diagnoses someone with SMA, she offers a little more hope. We are so grateful that early in our journey, we were put in touch with so many great families who are fighting for their children.
Your dad and I are constantly thinking about how we can best give you stimulation given your lack of ability to move...your uncle Alex came up with the great idea of setting up a fish tank for you to watch....I thought this was brilliant! I have to admit....with the exception of my children, I'm not very good at keeping other living things....well...alive. But I will definitely try because I think you would really love some goldfish at least for starters!
Love you so,
Mom
Friday, May 11, 2012
Dear John Paul,
It's about 1:45 in the morning on Saturday and I am beginning my day with you. You have had a very busy couple of days...Thursday, you had you first of many massages! I learned how to massage your face and legs and the therapist will come back to teach me the rest of you. You really seemed to like it and I think it will really help with some of your tighter areas.
Friday, you had an ENT (Ear, Nose Throat) appointment in order to check how your trach is doing and assess if you need a new size. The ladies at the front desk were taking their time getting you a room so that we could give you your saline neb to keep your airway moist and you ended up desatting to 71 in the waiting room....a room became available very quickly after that! The doctors said your airway looked great and that there was no need to change your trach size at this point.
After the appointment, since it was a beautiful May day, we decided to stop by the Shrine to the Immaculate Conception and do a pilgrimage to the beautiful statue of our Lady in the garden outside...you were enjoying your lunch while mom and dad prayed the rosary...unfortunately we had to cut things short and get on the road because your saturations started fluctuating a little and we were nervous that you were drying out too much...sure enough we ended up pulling over on North Capital Street to bag and suction you as you desatted to 87.
Don't worry, we aren't going to give up on taking you on adventures....we just have to get our systems set a little better...I think with a power inverter, we'll be able to neb in saline anywhere...and we may just do shorter trips and not combine adventures and doctors visits together.
When we got home, you took a nap and then around 5 pm, you and I got to snuggle sitting on the bench on the patio outside while the kids played in the yard. Finally you got to have a bath with the help of your uncle Joey who stopped by for a visit and then uncle Bobby helped dad with trach care so that I was able to go to bed early so that I could get up and give your dad a break.
All in all, a very good day. Your brothers and sister have really been enjoying doing more and more with you and practicing doing the things they aren't allowed to do yet on their baby doll. I added some pictures from the week to your slideshow.
Tomorrow is another busy day with visits from the Carneys, aunt Suzanne (who is awesome at doing pretty much all of your care and can give momma a break), and the Sousa's!
Love you so,
Mom
It's about 1:45 in the morning on Saturday and I am beginning my day with you. You have had a very busy couple of days...Thursday, you had you first of many massages! I learned how to massage your face and legs and the therapist will come back to teach me the rest of you. You really seemed to like it and I think it will really help with some of your tighter areas.
Friday, you had an ENT (Ear, Nose Throat) appointment in order to check how your trach is doing and assess if you need a new size. The ladies at the front desk were taking their time getting you a room so that we could give you your saline neb to keep your airway moist and you ended up desatting to 71 in the waiting room....a room became available very quickly after that! The doctors said your airway looked great and that there was no need to change your trach size at this point.
After the appointment, since it was a beautiful May day, we decided to stop by the Shrine to the Immaculate Conception and do a pilgrimage to the beautiful statue of our Lady in the garden outside...you were enjoying your lunch while mom and dad prayed the rosary...unfortunately we had to cut things short and get on the road because your saturations started fluctuating a little and we were nervous that you were drying out too much...sure enough we ended up pulling over on North Capital Street to bag and suction you as you desatted to 87.
Don't worry, we aren't going to give up on taking you on adventures....we just have to get our systems set a little better...I think with a power inverter, we'll be able to neb in saline anywhere...and we may just do shorter trips and not combine adventures and doctors visits together.
When we got home, you took a nap and then around 5 pm, you and I got to snuggle sitting on the bench on the patio outside while the kids played in the yard. Finally you got to have a bath with the help of your uncle Joey who stopped by for a visit and then uncle Bobby helped dad with trach care so that I was able to go to bed early so that I could get up and give your dad a break.
All in all, a very good day. Your brothers and sister have really been enjoying doing more and more with you and practicing doing the things they aren't allowed to do yet on their baby doll. I added some pictures from the week to your slideshow.
Tomorrow is another busy day with visits from the Carneys, aunt Suzanne (who is awesome at doing pretty much all of your care and can give momma a break), and the Sousa's!
Love you so,
Mom
Thursday, May 10, 2012
Dear John Paul,
I am writing you again in the wee hours of the morning...you look so peacefully quiet, all snuggled up the way your dad left you before he went to bed. Unfortunately, I had to cancel your eye therapist appointment on Monday because the cold I thought I had kicked, came back and the therapists won't come unless everyone in the house is healthy. They don't want to bring germs to the next house they visit...which I definitely can appreciate. I am feeling a lot better now though and we should be on for your regular PT and first baby massage session tomorrow morning! I guess at this point it is actually today....I will probably be writing you a lot of late night/early morning letters in the next few weeks as we are down to one nurse with our current nursing agency and will be switching to a new agency next week....and that means a lot of screening and training of new nurses...
I feel like perhaps I should clarify something I wrote you a couple of letters back....His yoke is light....It's not that your condition becomes easy or that we cease to suffer....no, there is suffering. I definitely cried until my eyes were swollen shut the day I learned your diagnoses. But suffering is a necessary part of our life on earth...and we should be grateful for it because it is the way we will be able to get to heaven some day. It is what we do with our suffering that is most important....do we hide from it, try to avoid it at all costs...or at others' cost? Do we get angry about it? Or do we see it for what it is....an opportunity. John Paul, suffering is an opportunity. It is an opportunity to love God, love others and to grow in virtue.
All worthwhile endeavors require sacrifice and suffering....the athlete training for the race, undergoes intense physical suffering and is rewarded with a medal. A doctor submits to the rigors of med school and is rewarded with respect and prestige. Suffering is made tolerable in light of its purpose.
John Paul, you have a beautiful purpose.
The yoke of caring for you is light because with it comes a great opportunity to love and experience God's great desire for me to be with Him heaven some day.
I hope as you grow, you will learn to use your own suffering as an opportunity. It is an opportunity to unite yourself with Christ's suffering on the cross and to get to know Jesus better. It is an opportunity to grow in virtue and help win graces for other people. It is your opportunity to get to heaven.
I know this is heavy stuff for a 5 month old! But my hope is that you will be able to read this and appreciate it some day....and I hope that my writing this now, will bring it even more meaning in the context of my reflections at the beginning of this journey we are on together.
Thank you for the opportunity to love you,
Mom
I am writing you again in the wee hours of the morning...you look so peacefully quiet, all snuggled up the way your dad left you before he went to bed. Unfortunately, I had to cancel your eye therapist appointment on Monday because the cold I thought I had kicked, came back and the therapists won't come unless everyone in the house is healthy. They don't want to bring germs to the next house they visit...which I definitely can appreciate. I am feeling a lot better now though and we should be on for your regular PT and first baby massage session tomorrow morning! I guess at this point it is actually today....I will probably be writing you a lot of late night/early morning letters in the next few weeks as we are down to one nurse with our current nursing agency and will be switching to a new agency next week....and that means a lot of screening and training of new nurses...
I feel like perhaps I should clarify something I wrote you a couple of letters back....His yoke is light....It's not that your condition becomes easy or that we cease to suffer....no, there is suffering. I definitely cried until my eyes were swollen shut the day I learned your diagnoses. But suffering is a necessary part of our life on earth...and we should be grateful for it because it is the way we will be able to get to heaven some day. It is what we do with our suffering that is most important....do we hide from it, try to avoid it at all costs...or at others' cost? Do we get angry about it? Or do we see it for what it is....an opportunity. John Paul, suffering is an opportunity. It is an opportunity to love God, love others and to grow in virtue.
All worthwhile endeavors require sacrifice and suffering....the athlete training for the race, undergoes intense physical suffering and is rewarded with a medal. A doctor submits to the rigors of med school and is rewarded with respect and prestige. Suffering is made tolerable in light of its purpose.
John Paul, you have a beautiful purpose.
The yoke of caring for you is light because with it comes a great opportunity to love and experience God's great desire for me to be with Him heaven some day.
I hope as you grow, you will learn to use your own suffering as an opportunity. It is an opportunity to unite yourself with Christ's suffering on the cross and to get to know Jesus better. It is an opportunity to grow in virtue and help win graces for other people. It is your opportunity to get to heaven.
I know this is heavy stuff for a 5 month old! But my hope is that you will be able to read this and appreciate it some day....and I hope that my writing this now, will bring it even more meaning in the context of my reflections at the beginning of this journey we are on together.
Thank you for the opportunity to love you,
Mom
Sunday, May 6, 2012
Dear John Paul,
Happy Birthday! Today you are 5 months old! It's hard to believe it has been 5 months since you entered the world...time has kind of been standing still for me....I am still catching myself dating things December!
Friday night you got to spend a little time with your Nona and Pop-pop and yesterday you got to see Grandma and Grandpa and also got a little visit from Sister Joan and Nanny and Pop-pop Kilner. Everyone has been impressed with how much better you have been focusing. You have had a lot of alert time in the last few days as well.
Tomorrow you have a special vision therapist coming to see you and hopeful we can work on some exercises to help you track better.
I can't wait for another great week with you...
Love always,
Mom
Happy Birthday! Today you are 5 months old! It's hard to believe it has been 5 months since you entered the world...time has kind of been standing still for me....I am still catching myself dating things December!
Friday night you got to spend a little time with your Nona and Pop-pop and yesterday you got to see Grandma and Grandpa and also got a little visit from Sister Joan and Nanny and Pop-pop Kilner. Everyone has been impressed with how much better you have been focusing. You have had a lot of alert time in the last few days as well.
Tomorrow you have a special vision therapist coming to see you and hopeful we can work on some exercises to help you track better.
I can't wait for another great week with you...
Love always,
Mom
Saturday, May 5, 2012
Dear John Paul,
It is 2:30 am and your father just went to bed and I am starting my shift. We haven't had a nurse to care for you since Wednesday night and won't until Saturday night. We're tired, but you are worth every minute and more. If ever there was an argument for having big families...you are it! We have been so blessed with such an amazing family and the extended family of friends that comes with it that have been so critical in helping us take care of you. I hope some day you will be able to appreciate how much generosity you have inspired in so many.
Believe it or not, your dad and I both had a feeling that some day we would be given a child with special needs. We had never heard of SMA until you were diagnosed, so that was not what we had imagined but I would say starting with my pregnancy with your sister Madie...I had the distinct impression that I should be prepared for a child with special needs...I thought perhaps a child with Downs Syndrome or cerebral palsy since those were the ailments I was most familiar with. Towards the end of my pregnancy with you, I impulsively felt the need to visit a church to pray for the your health...before you were born. While I have tried to visit Jesus in tabernacles for a long time...I had never actually done so with the specific intention for my unborn child until you...although I probably should have.
I guess what I am trying to say is that, when God asks something special from you...he also gives you the tools and the grace to do it. If ever you are sad or overwhelmed with a struggle you face...I hope you will remember to ask God for that strength....His yoke is light...
I can't wait to hold you again...I went from having a cold to not having enough help from nurses that I haven't been able to hold you in several days...I hope we will be able to have a good long snuggle soon!
I love you so much!
Mom
It is 2:30 am and your father just went to bed and I am starting my shift. We haven't had a nurse to care for you since Wednesday night and won't until Saturday night. We're tired, but you are worth every minute and more. If ever there was an argument for having big families...you are it! We have been so blessed with such an amazing family and the extended family of friends that comes with it that have been so critical in helping us take care of you. I hope some day you will be able to appreciate how much generosity you have inspired in so many.
Believe it or not, your dad and I both had a feeling that some day we would be given a child with special needs. We had never heard of SMA until you were diagnosed, so that was not what we had imagined but I would say starting with my pregnancy with your sister Madie...I had the distinct impression that I should be prepared for a child with special needs...I thought perhaps a child with Downs Syndrome or cerebral palsy since those were the ailments I was most familiar with. Towards the end of my pregnancy with you, I impulsively felt the need to visit a church to pray for the your health...before you were born. While I have tried to visit Jesus in tabernacles for a long time...I had never actually done so with the specific intention for my unborn child until you...although I probably should have.
I guess what I am trying to say is that, when God asks something special from you...he also gives you the tools and the grace to do it. If ever you are sad or overwhelmed with a struggle you face...I hope you will remember to ask God for that strength....His yoke is light...
I can't wait to hold you again...I went from having a cold to not having enough help from nurses that I haven't been able to hold you in several days...I hope we will be able to have a good long snuggle soon!
I love you so much!
Mom
Wednesday, May 2, 2012
Dear John Paul, Today you had your first official PT session. We got you in the prone position which we have been really bad about and gave you a good hip stretch...the plan is to get you prone at least once or twice a day. I also was thrilled to see you moving your jaw this morning!!! Little by little you are showing signs of improvement that makes all of us so proud. You also had a very alert day with a lot of eye focus...you were just looking around and taking things in. It was great!
This morning, your Dad and I said a Memorare before we blessed you with some water from Lourdes, France that a friend of your Aunt Monica gave you. Mary, Jesus' mother, appeared to St. Bernadette there and the water from the spring there has healed many people. We know that if Mary asks Jesus to heal you, He will. But we also know that Mary is very close to Jesus in heaven and understands His plan better than we do. While we will always pray for your health, our happiness is not rooted in it. Our happiness is rooted in knowing that we are cooperating in God's plan...even when we don't fully understand it. I hope that someday, if a cure is not God's plan, that you will have joy and peace in knowing that by your cheerful acceptance of your illness and offering it to Jesus---that you are bringing many people closer to God and that is a very beautiful and special vocation.
You make us so proud!
Love you so,
Mom
This morning, your Dad and I said a Memorare before we blessed you with some water from Lourdes, France that a friend of your Aunt Monica gave you. Mary, Jesus' mother, appeared to St. Bernadette there and the water from the spring there has healed many people. We know that if Mary asks Jesus to heal you, He will. But we also know that Mary is very close to Jesus in heaven and understands His plan better than we do. While we will always pray for your health, our happiness is not rooted in it. Our happiness is rooted in knowing that we are cooperating in God's plan...even when we don't fully understand it. I hope that someday, if a cure is not God's plan, that you will have joy and peace in knowing that by your cheerful acceptance of your illness and offering it to Jesus---that you are bringing many people closer to God and that is a very beautiful and special vocation.
You make us so proud!
Love you so,
Mom
Sunday, April 29, 2012
Dear John Paul,
I thought you'd like to know how all of your siblings like to be a part of your day in their own little ways..Joey loves helping by flipping the switch on your suction machine and even assisted in trach care for the first time this week...donning medical gloves and passing me trach ties, cotton swabs, etc...Liam is your unofficial physical therapist and loves doing your arm stretches, nurse Madie loves helping you get your formula and medicine by opening the plug to your G-tube and even plunging the syringe of medicine once it's in the med port...she also loves to "pat the tubing" or clear condensation from your circuit and empty the water trap..."Cassanova Ben" loves to give you kisses just about anywhere we will let him. All of the kids love to be a part of story time by helping lift the flaps in your peek-a -boo books or rubbing your hand over the different textures of your animal books.
I know it won't be long before we have Joe helping with suctioning and bagging and giving nebs or coughs.
Today Daddy held you for about 3 hours this afternoon--he was in heaven...I can't wait to hold you again but I'm going to wait until I'm sure that I'm not contagious with this cold.
This should be a great week...your first official physical therapy session on Wednesday and we should be finding out when you get your first baby massage too! We found out that the Model Waiver will officially start May 16th but we don't know what the nursing hours will be on that yet...hopefully we'll find out this week.
I'm going to close this note to you now so that I can do a little chest PT and cough assist since your nebs are finishing up. I love being able to do any little thing that I can to help you.
Good night "Bright Eyes"!
Love you so,
Mom
I thought you'd like to know how all of your siblings like to be a part of your day in their own little ways..Joey loves helping by flipping the switch on your suction machine and even assisted in trach care for the first time this week...donning medical gloves and passing me trach ties, cotton swabs, etc...Liam is your unofficial physical therapist and loves doing your arm stretches, nurse Madie loves helping you get your formula and medicine by opening the plug to your G-tube and even plunging the syringe of medicine once it's in the med port...she also loves to "pat the tubing" or clear condensation from your circuit and empty the water trap..."Cassanova Ben" loves to give you kisses just about anywhere we will let him. All of the kids love to be a part of story time by helping lift the flaps in your peek-a -boo books or rubbing your hand over the different textures of your animal books.
I know it won't be long before we have Joe helping with suctioning and bagging and giving nebs or coughs.
Today Daddy held you for about 3 hours this afternoon--he was in heaven...I can't wait to hold you again but I'm going to wait until I'm sure that I'm not contagious with this cold.
This should be a great week...your first official physical therapy session on Wednesday and we should be finding out when you get your first baby massage too! We found out that the Model Waiver will officially start May 16th but we don't know what the nursing hours will be on that yet...hopefully we'll find out this week.
I'm going to close this note to you now so that I can do a little chest PT and cough assist since your nebs are finishing up. I love being able to do any little thing that I can to help you.
Good night "Bright Eyes"!
Love you so,
Mom
Saturday, April 28, 2012
Dear John Paul, It is almost 4 am and I have been watching you sleep for almost an hour. Your father and I have taken turns staying up with you tonight since the nurse who usually comes couldn't be here. I have decided to start writing you these letters in the hopes that some day they will help you understand the journey you started even before you could remember it and to help your siblings, our family and friends understand what your life means to us.
This week, your other siblings have all been fighting colds and now I have a slight twinge in the back of my throat too...Airborne and hand sanitizer have become my constant companions and I am praying that as I care for you tonight, that I do not pass it on to you.
I thought that maybe in this first letter to you, it might be helpful to back up and tell you the story of how you were born.....
You are my fifth living child and fourth son, I lost two babies early in my pregnancies--one after Joey and one just one month before God gave me you. My pregnancy with you was different from the other kids in a few ways...sometime in the second half of my pregnancy, I didn't feel you moving as much as I had felt that other kids...I told my doctor and we did a non-stress test but since you weren't in any distress...it didn't really show anything. I chalked it up to you being an easy going guy and didn't think too much more about it. At the very end of the pregnancy an ultrasound showed that I had way more amniotic fluid than usual...at the time, we didn't think much of it but now we know that it was because you weren't swallowing the way most babies in utero do.
We decided to induce labor because it was looking like you were going to be a big baby and the the day was set for December 6th, the feast of St. Nicholas. I had gotten an epidural but I started feeling nausiated from low blood pressure and your heart rate started going up so we turned it off right before I started pushing...I pushed for about two hours and finally we ended up using the vacuum to get your head out but then your body wasn't following fast enough...everyone sprang into action...nurses pushing down on my stomach, the doctor did a huge episiotomy and basically had to tear you out of me. You were black and blue with bruises, swollen and weren't breathing very well. I couldn't hear you cry. They told us that they thought you had a broken arm and collar bone that had punctured a lung. I got to see you for a second and you were wisked away to the NICU. After x-rays were done, they saw you had a broken left arm but your collar bone was fine and your lung was fine....but you weren't moving very much at all, had a barely audible cry and were breathing very fast....not to mention, still very swollen and bruised and your wrists had contractures. At first, everything was explained by the traumatic birth and that it would just take a little time but as the days went by and you were not improving...the doctors became more concerned. On the morning of December 9th, they consulted with a neurologist from Children's who came to see you. He was immediately concerned when he had trouble provoking basic reflexes that you had a spinal cord injury...he called for a transport team and you were transferred to Children's. After 5 days of tests, x-rays, MRI's, C-scans, etc...a spinal cord injury was ruled out and and the doctors began to investigate an underlying illness...you were tested for SMA (Spinal Muscular Atrophy) and 3 weeks later, your diagnoses was confirmed. In the interim, everyone....doctors, nurses, your dad and I, were all trying to learn what you needed...you were having a lot of breathing issues and we were trying different ways to help you but nothing was working. Finally, after talking with an SMA specialist in Wisconsin, we cam e to the conclusion that the only way you would be able to breath, was with the help of a tracheostomy and ventilator. During the same surgery, you had a G-tube and Nissen because you aren't able to swallow.
After that, it was just more learning how to take care of you so that we could bring you home...we were so excited to have you at home and a part of our crazy family life. Your siblings love you dearly and the favorite part of their day is being with you.
Well this is a lot for one letter, more later....
I love you with all my heart,
Mom
This week, your other siblings have all been fighting colds and now I have a slight twinge in the back of my throat too...Airborne and hand sanitizer have become my constant companions and I am praying that as I care for you tonight, that I do not pass it on to you.
I thought that maybe in this first letter to you, it might be helpful to back up and tell you the story of how you were born.....
You are my fifth living child and fourth son, I lost two babies early in my pregnancies--one after Joey and one just one month before God gave me you. My pregnancy with you was different from the other kids in a few ways...sometime in the second half of my pregnancy, I didn't feel you moving as much as I had felt that other kids...I told my doctor and we did a non-stress test but since you weren't in any distress...it didn't really show anything. I chalked it up to you being an easy going guy and didn't think too much more about it. At the very end of the pregnancy an ultrasound showed that I had way more amniotic fluid than usual...at the time, we didn't think much of it but now we know that it was because you weren't swallowing the way most babies in utero do.
We decided to induce labor because it was looking like you were going to be a big baby and the the day was set for December 6th, the feast of St. Nicholas. I had gotten an epidural but I started feeling nausiated from low blood pressure and your heart rate started going up so we turned it off right before I started pushing...I pushed for about two hours and finally we ended up using the vacuum to get your head out but then your body wasn't following fast enough...everyone sprang into action...nurses pushing down on my stomach, the doctor did a huge episiotomy and basically had to tear you out of me. You were black and blue with bruises, swollen and weren't breathing very well. I couldn't hear you cry. They told us that they thought you had a broken arm and collar bone that had punctured a lung. I got to see you for a second and you were wisked away to the NICU. After x-rays were done, they saw you had a broken left arm but your collar bone was fine and your lung was fine....but you weren't moving very much at all, had a barely audible cry and were breathing very fast....not to mention, still very swollen and bruised and your wrists had contractures. At first, everything was explained by the traumatic birth and that it would just take a little time but as the days went by and you were not improving...the doctors became more concerned. On the morning of December 9th, they consulted with a neurologist from Children's who came to see you. He was immediately concerned when he had trouble provoking basic reflexes that you had a spinal cord injury...he called for a transport team and you were transferred to Children's. After 5 days of tests, x-rays, MRI's, C-scans, etc...a spinal cord injury was ruled out and and the doctors began to investigate an underlying illness...you were tested for SMA (Spinal Muscular Atrophy) and 3 weeks later, your diagnoses was confirmed. In the interim, everyone....doctors, nurses, your dad and I, were all trying to learn what you needed...you were having a lot of breathing issues and we were trying different ways to help you but nothing was working. Finally, after talking with an SMA specialist in Wisconsin, we cam e to the conclusion that the only way you would be able to breath, was with the help of a tracheostomy and ventilator. During the same surgery, you had a G-tube and Nissen because you aren't able to swallow.
After that, it was just more learning how to take care of you so that we could bring you home...we were so excited to have you at home and a part of our crazy family life. Your siblings love you dearly and the favorite part of their day is being with you.
Well this is a lot for one letter, more later....
I love you with all my heart,
Mom
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