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
Tuesday, June 26, 2012
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
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