The harm in doing things by the book
When I was pregnant with Paige, I did everything by the book. If it said to sleep eight hours a night, I did it. If they told me to exercise 30 minutes a day, I did it. If they told me to take prenatal vitamins 3 months before getting pregnant, I did. Check, check, check. I followed every step, every precaution, every methodology recommended because I wanted my baby girl to be perfect.
And she was...she just couldn't wait to join this world. I was put on bedrest around 30 weeks of pregnancy due to low amniotic fluid. After being hospitalized for a weekend for a rally attempt, I never went home after my week perinatal appointment. He sent me straight to the hospital. They closely monitored both Paige and I, and decided the night before she turned 32 weeks that they would have to do an emergency C-Section the very next morning...it was no longer safe for her to remain in my belly.
I was crushed. As much as I wanted to meet this sweet little daughter of ours, our first baby, I didn't want her to come out this soon. I wanted her to finish all of the vital processes that occur during those last few weeks of the third trimester. Our OB and neonatologist both gave us the factors involved, as well as the hope that I needed to make it through the next 31 days in the NICU.
After echocardiograms, blood transfusions, full intubation, nasal cannulas, listening to the monitors and beeps that would sound in our sleep, PIC lines, feeding tubes...we were finally able to bring our little princess home.
I remember so vividly sitting in the NICU, holding my precious little girl's hand through the small holes in the incubator, wondering WHY I was sitting there, when I had done absolutely everything by the book.
I racked my brain, conferenced with my OB, googled possible factors, played out every scenario in my head to try and figure out the reason why, admist harboring the mother guilt for having to watch your baby suffer through medical procedures and antibiotics that shouldn't even be on the docket for newborn babies.
Even though I had read "What to Expect When You Are Expecting," no one ever told me what not to expect.
We had the March of Dimes walk this weekend, our fifth walk since we became participants in their Family Teams Committee. It doesn't matter how old Paige gets, how many other factors we have going on in our lives, that day will ALWAYS be about Paige.
Today in our IOP meeting, we talked about the regression that we have seen across the board. Again, the mother guilt popped up and I expressed to our therapist and Peter (who was able to attend today- yay!) that we had worked so hard to get Hunter into all of these programs because it was what we thought we had to do. And now that we are seeing regression, having so many "logs in the fire," should we not have followed what the book says to do?
Taking the biomedical approach is definitely not going by the book. With Hunter, we know there is a medical component. All of these steps, all of the time and effort will God-willing someday soon lead us to the answer, to the correct path, to the solution that we have been waiting for and searching for with every ounce of ourselves.
I didn't plan to have Paige in the NICU for 31 days. I didn't read a parental handbook on what to do if your son reacts badly to a strep infection during a critical stage of development. I didn't have a step-by-step guide to find the plethora of doctors that we have utilized in our pursuit of recovery.
What I did read and follow is another book, and at times like these, the only book that seems to hold true.
My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. (Psalm 62:1-2)
Still waiting to hear from our neuro-immunologist to determine if I can write a conclusion, a happy ending; or if we yet again, continue on with a new chapter, still searching for the answer that will allow us to put this book on the shelf...never to be forgotten, but a silent reminder of the journey.
And she was...she just couldn't wait to join this world. I was put on bedrest around 30 weeks of pregnancy due to low amniotic fluid. After being hospitalized for a weekend for a rally attempt, I never went home after my week perinatal appointment. He sent me straight to the hospital. They closely monitored both Paige and I, and decided the night before she turned 32 weeks that they would have to do an emergency C-Section the very next morning...it was no longer safe for her to remain in my belly.
I was crushed. As much as I wanted to meet this sweet little daughter of ours, our first baby, I didn't want her to come out this soon. I wanted her to finish all of the vital processes that occur during those last few weeks of the third trimester. Our OB and neonatologist both gave us the factors involved, as well as the hope that I needed to make it through the next 31 days in the NICU.
After echocardiograms, blood transfusions, full intubation, nasal cannulas, listening to the monitors and beeps that would sound in our sleep, PIC lines, feeding tubes...we were finally able to bring our little princess home.
I remember so vividly sitting in the NICU, holding my precious little girl's hand through the small holes in the incubator, wondering WHY I was sitting there, when I had done absolutely everything by the book.
I racked my brain, conferenced with my OB, googled possible factors, played out every scenario in my head to try and figure out the reason why, admist harboring the mother guilt for having to watch your baby suffer through medical procedures and antibiotics that shouldn't even be on the docket for newborn babies.
Even though I had read "What to Expect When You Are Expecting," no one ever told me what not to expect.
We had the March of Dimes walk this weekend, our fifth walk since we became participants in their Family Teams Committee. It doesn't matter how old Paige gets, how many other factors we have going on in our lives, that day will ALWAYS be about Paige.
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| Face painting and balloons from the Family Teams Clown
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Today in our IOP meeting, we talked about the regression that we have seen across the board. Again, the mother guilt popped up and I expressed to our therapist and Peter (who was able to attend today- yay!) that we had worked so hard to get Hunter into all of these programs because it was what we thought we had to do. And now that we are seeing regression, having so many "logs in the fire," should we not have followed what the book says to do?
Taking the biomedical approach is definitely not going by the book. With Hunter, we know there is a medical component. All of these steps, all of the time and effort will God-willing someday soon lead us to the answer, to the correct path, to the solution that we have been waiting for and searching for with every ounce of ourselves.
I didn't plan to have Paige in the NICU for 31 days. I didn't read a parental handbook on what to do if your son reacts badly to a strep infection during a critical stage of development. I didn't have a step-by-step guide to find the plethora of doctors that we have utilized in our pursuit of recovery.
What I did read and follow is another book, and at times like these, the only book that seems to hold true.
My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. (Psalm 62:1-2)
Still waiting to hear from our neuro-immunologist to determine if I can write a conclusion, a happy ending; or if we yet again, continue on with a new chapter, still searching for the answer that will allow us to put this book on the shelf...never to be forgotten, but a silent reminder of the journey.
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