Thursday, March 17, 2011

Why I'm Walking

Our Superhero - Peyton James


I've been trying to write this blog for days.

It seems simple enough, tell the people why you are raising money for the March of Dimes this year.  But it's harder than you might think to share Peyton's story.  I can share the details of his birth and our stay in the NICU, but I can't ever let you know what it felt like, what it still feels like, to live through our experience. 

My pregnancy with Peyton definitely wasn't easy and with time, it wasn't getting easier.  I spent most of December on moderate bedrest trying to keep my blood pressure down and my blood sugar in line.  I started going to the doctor twice a week when I was around 30 weeks pregnant.  At one visit I would have an ultrasound as part of a biophysical profile and at the other I would have a non-stress test.  Peyton was growing fast.  At 35 weeks, his weight was estimated to be over 8 pounds.  My health was starting to deteriorate.  My doctor discussed my health with a specialist and together we decided that starting at 36 weeks, we would do an amnio to determine Peyton's lung maturity.  If his lungs weren't mature, we would test again the following week until we reached 39 weeks at which point he would be delivered no matter what the amnio showed.  Typcially the mother can receive a corticosteroid shot to help the baby's lungs mature.  However, this treatment has been shown to increase blood sugar and because my gestational diabetes was already very difficult to control with insulin it wasn't an option for me. 

On Monday, January 3, I went into the hospital for an amnio and then went home to wait for the results.  I got the call from my doctor around midnight.  Peyton's lungs were mature and we would go forward with the c-section on Tuesday afternoon.  She reminded me that even though his lungs were mature, he would probably spend some time in the nursery being monitored.  I went to sleep that night excited to think that soon I'd be holding my sweet boy in my arms.

Peyton came into this world with a cry at 1:12 p.m. on Tuesday, January 4.  His cry was music to my ears.  I began crying as soon as I heard him and I remember thanking God that my sweet boy was born healthy.  I naively believed that as long as he was crying, he was okay.  But something wasn't right.  The mood shifted in the room and I remember thinking it was too quiet.  The nurses bundled Peyton up, let me see his face and then quickly rushed out of the room.  I didn't know what to think.  Later, the midwife who assisted my ob-gyn told me that she had never seen a baby score so high on the APGAR (an 8 at 1 minute and 9 at 5 minutes) and then become so critically ill so quickly.  The pediatrician and nurses noticed right away that Peyton was breathing too hard and immediately began treating him for respiratory distress syndrome.

When I was finally back in my room recovering from my surgery, things started to get confusing.  I sent Brian to go get Jackson because I assumed Peyton would only be in the nursery for a short time and I wanted Jackson to be able to meet his brother.  I had no idea how serious Peyton's condition was because for the first few hours no one discussed it with us.  My mom and my sister stood outside the nursery trying to figure out what was happening, but no one was telling us anything.  At one point the nurse actually shut the blinds so they couldn't see Peyton anymore.  When they came back to my room and told me as much as they knew about what was wrong, I became terrified. 

Peyton was born at 1:12, no one came to talk to me about him until dinnertime.  I was told that his lungs were not mature when he was born and that he was working too hard to breathe.  (The neonatolgist later told me that Peyton's lungs were so underdeveloped that even if I had delivered at 40 weeks he would have been sick.  I'm still not sure how the test showed mature lungs.)  They had started him on a treatment called continuous positive airway pressure (CPAP) that delivers slightly pressurized air through the nose and can help keep the airways open and may prevent the need for a breathing machine, but it wasn't enough.  The pediatrician felt that Peyton needed to be intubated and while they were capable of doing that, the nursery was not equipped to treat him.  The hospital where I delivered has a Level II nursery which is only capable of treating mildly ill babies.

Peyton was very ill.

The decision was made to transfer Peyton to Northside Hospital in Atlanta. He needed to be moved quickly, so he was transported by helicopter. While we waited for the helicopter, I was able to sit with him in the nursery and touch his foot. I could not see his face. When the transport team arrived, they intubated Peyton and then packed him into a portable incubator that looks a lot like the bag used when you get a pizza delivered.  They brought him into my room so I could see him one more time.  It was hard to look at him and to wrap my head around what was happening, but one of the EMT's promised me that they would take care of him like he was their own.  And then he was gone.

Peyton's CPAP Mask

Brian and my mom drove to Northside to be with him.  They kept me updated through texts and phone calls.  My mom said they gave them a packet when they got there that explained Peyton's condition and how the NICU worked.  I sat alone, feeling helpless and praying that my baby was okay. 

Peyton's neonatoligist called me every day to update me on his progress.  Our first few conversations were terrifying.  Peyton's left lung has collapsed.  Peyton's condition has gotten worse.  Peyton is on a ventilator.  We've inserted a chest tube.  We need to insert a larger chest tube.  Peyton is heavily sedated.  Imagine hearing these things over the phone.  I was recovering from surgery in another hosptial.  He was miles away.  I never held him.  I had not whispered in his ear how much I loved him.  I hadn't kissed his sweet face.  My poor baby was so sick and there was nothing I could do. 
It's common with respiratory distress for the baby's condition to worsen in the first 2-4 days.  Peyton was no exception.  When I saw him hooked up to so many machines with wires everywhere, my heart broke.  How was I supposed to believe the doctor when he told me that Peyton would recover totally from this?  But that is what he told me over and over again.  And then on the 5th day, we started to see improvement. 

When Peyton was a week old, I held him for the first time.  I will be forever grateful to my dad for getting me to the hospital that day following a snowstorm that literally shut the state down.  It is a moment that I will cherish forever.  No longer was our interaction limited to changing his diaper every 3 hours!  I could finally hold him in my arms.  But our journey was far from over. 

Peyton continued to need oxygen until just a few days before he was discharged.  He would do really well for hours, but then he would desat (when the O2 concentration in the blood drops below a certain level, usually below 90%) and have to go back on oxygen again.  He did much better with feedings.  He was on an IV for the first week and then started tube feeding.  By the end of the second week he was taking almost all his feedings by the bottle instead of the feeding tube. 

On Peyton's 11th day in the hospital he was moved from the NICU into the Level III special care/transition nursery.  In this nursery, the focus is on your baby getting stronger and getting ready to come home.  Peyton started seeing a physical therapist.  He was lacking strength in his wrists and he wasn't grasping correctly, so she worked with him every day and gave us a list of exercises to do each time we changed Peyton's diaper. 

On Peyton's 15th day in the hospital I got a call that from the neonatologist that seemed to come out of nowhere.  Both the doctor and the physical therapist felt that Peyton had low tone and wanted him to be evaluated by a neurologist.  I was completely overwhelmed.  After all we had already been through, what more could we really handle?  But the neurologist didn't feel the problem was severe.  As he so brilliantly put it, "This baby was very sick.  He needs time to heal.  Give him a break."  He doesn't know how much I wanted to hug him when he said that. 

Peyton continued to improve and on the 21st day, he passed his car seat tolerance test and we were able to bring him home.  He didn't require any medicine.  No special instructions.  We simply needed to follow up with the audiologist and neurologist in a few weeks and see our pediatrician by the end of the week.

It was amazing to bring our baby home-FINALLY!  Since he's been home we've survived a trip to the ER for a fever, his first cold and his first round of shots.

We recently followed up with the audiologist and has his hearing tested again.  Peyton has minimal permanent hearing loss at high frequencies in his right ear likely caused by the ventilator.  He will need to have his hearing tested every 6 months until he is 3 to see if the condition worsens and to determine if he will need some form of speech therapy.

This week we followed up with the neurologist.  He sees a mild case of low truncal tone and head lag.  He still feels that Peyton will grow out of this.  We will follow up again when Peyton is 7 months old.  I pray that it's nothing and that he really will outgrow it.  This poor boy has been through so much already!

And that is why I'm walking in the March of Dimes March for Babies this year.  In celebration of what our superhero Peyton has overcome.  He is truly a miracle.

Please consider joining our team and walk with us in celebration of Peyton on May 6 in Canton.  You can register here:  http://www.marchforbabies.org/team/t1524711.  If you aren't able to join us for the walk, please consider donating to our team.  You can donate here:  http://www.marchforbabies.org/nmbalejcsik or here http://www.marchforbabies.org/team/t1524711

3 comments:

  1. Stephanie NicholsonMarch 17, 2011 at 7:22 PM

    Sweet P has come so far that it's hard to relive his first weeks. Maybe post a picture of our little chubster so everyone can see the results of the MOD's great work.

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  2. Hugs to the amazing nurses who truly did treat sweet p as their own

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  3. It all seems like a dream to me at times and then I get to hold Peyton and it is so rela ...but he has come so far and he is such a cute little guy and I know just how lucky we are to have all the wonderful help we had and all the prayers and thoughts from family and friends has also been wonderful....I love you and the boys so much
    Dad

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