13 days Post Op

We've been home for 8 days now.  8 VERY LONG days and nights.

Tim started back to both jobs 7 days ago.  He has been so kind and gracious, giving me so much help when he is home.  I wouldn't have made it the last two weeks without him by my side at the hospital and at home!!  Thanks babe, I know you are exhausted!!!

I don't think I've been this tired, since Nora was born and in the NICU!!

Iain came home with his schedule a complete mess.  He was used to the nurses coming and going and even the nurses shift change!  He was waking, even though there was no reason to wake. We thought it was comical that he was waking, looking for his nurses. :)  I would have done the same if I'd had Meg and Lauren each night and day!!

We came home with a strict Tylenol schedule of every 4 hours.  Tim and I were amazed that was all he was on for pain.  All the Drs. and Nurses said this is how amazing little bodies are.  I don't know what we expected, but we didn't expect Iain to be crying and inconsolable every waking hour.  As it was happening, it made sense to us, he was in pain!  We did our best to comfort him.  He was eating constantly, sometimes 1 oz. sometime 5 oz.  There was no rhyme or reason to any part of his sleeping and eating schedule.

In the evening of our first full day home, I went to give Iain a bath.  At this point, I noticed that he had spots all over his body.  By morning, he had them head to toe.  I took him to our family Dr.  She was pretty sure that it was an allergic reaction to the Lasix (meds to keep fluid from building around the heart), so she called Penny at Hershey Med.  They agreed, so they took him off the Lasix and started him on 5 days of steroids   After 2 days of steroids the rash had disappeared.  Those 3 days of the reaction were THE worst.  Poor Iain was uncomfortable from itching AND pain.  It was heartbreaking.

Iain at the Doctors for his Rash

After the rash was finally gone, we notice Iain was still showing signs of pain.  He was waking up whimpering and crying.  He had times of just inconsolable crying.  Holding him, feeding him, giving his nuk...the normal things that bring comfort were not working in conjunction with the Tylenol.  It was pretty obvious that around 3 hrs into the pain meds, he was the worse.

Each day, I thought maybe he just needed one more day.  I have talked with other parents of babies that have had OHS and they all claimed the same problems.  It seems to be a pretty normal response to OHS.

Finally, 5 days after getting home (Saturday) I couldn't take seeing him in this much pain anymore.  I called Hershey Med, but didn't get much help being it was an evening on a weekend.  So, then I called our Cardiologist.  We decided it was best to start giving him Motrin along with the Tylenol.  So, we started Motrin/Tylenol schedule every 3 hours.  It took about 24 hours, but it has made a CLEAR difference in Iain.

He still isn't sleeping much, day or night.  BUT he is spending much less time screaming.

Last night, he actually had a 4 hours stretch of sleep...which meant that I had a 3 hour uninterrupted stretch!

We are still in survival mode.  Our days are completely dependent on how Iain is doing.

Hurricane Sandy postponed his Cardiologist appointment, so we don't go until tomorrow.  Hopefully, we will have only good news!

Thank you so much for your continued prayers and support!!  We are so thankful for the frozen meals we received.  We are thankful that my parents kept the girls overnight for us and that Matthew and Janelle watched Iain so we could go out for a few hours!!!

Thanks to our marvelous neighbors!  Susan saw and heard Iain on one of our worst days and brought us a hot, yummy meal.  Thanks to Jacob who mowed and raked our leaves!!!!

We are so thankful for our family, church family and wonderful friends and neighbors.  God has been so gracious to us!!      

9 days post op

His incision is healing well!