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,

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 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 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 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 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,