We knew it was coming

We just didn't expect a phone call at 4 pm saying that Nicolas was scheduled for surgery at Phoenix Childrens Hospital the next morning at 8 am. We were a little disappointed that he wasn't able to get into the GI doctor and so he was unable to get his G button in his belly(to replace his ng tube we feed him with now through the nose) I spent the evening trying to get everything together, my clothes and shampoo and stuff that the last time I spent a couple weeks in the hospital I really wish I would have had. Then I got Nicolas's things together and all of the paperwork we needed and in the back of my mind all I could think was... just go hold your baby.. if something goes wrong tomorrow you are going to wish you would have just held him tonight. But when I am nervous I cannot just sit.. I have to do... and the baby was sleeping peacefully in his swing(if you know P you know that is a rarity) By the time I went to bed it was about 2 am, we had to feed him at 3:30 am so he could finish by 4:0t.0 am as he couldn't be fed after that due to surgery, so we set the alarm for 3:30 and snoozed for a bit. Morning came early and we packed our stuff into the car and set off to Phoenix children's Hospital(PCH). We had to leave by 6:00 am in order to get there in time. It was raining really hard as it was the last time we took him to his doc in Phoenix(so much for the dry desert) We arrived on time and jumped through some hoops.



WAVIN BYE BYE





At 10:00 am I handed our little angel baby over to the OR nurse and kissed his head what felt like a million times. I felt like I might never see my sweet P again. He is a high risk anesthesia patient and that worried me. I LOST IT right after I handed him off and cried my way to the waiting room where Nick and I hugged and prayed for our Nicolas. It was almost two hours before we heard anything. Every minute felt like an hour! Finally Dr. Schraff came out and told us that the surgery went fine, they placed the trach, did the bronchoscopy, the other scopes the ENT needed to do, and now he was in having his hearing tested. We were both so relieved that he was doing ok. About half an hour after that we were able to go back and walk beside him as they moved him to the ICU.He looked so cute and pink. They told us they needed to get him set up and that we could go to the family waiting room and wait. We finally got to go back to be with him, when we got there they were taking x rays and he wasn't happy. Seeing him in distress was hard. When a baby is on a vent you cant hear them cry, they open their mouth to scream but no air passes their voicebox so no sound comes out and to me it seems like they are choking and gasping for air. It takes some getting used to and I am still not used to it. He has to be watched constantly because if you aren't looking at him you wouldnt know he was in distress, that is until the alarm sounds on the vent. He pulled it off several times, the alarm is SO LOUD. My nerves were already shot and that was about to put me over the edge! I could go on and on with the events of the night, how Nick and I took turns sleeping and watching him. He had a fever of 102.5 so we were extra worried about him. Today that fever is getting better and is THANK GOD... totally normal the last time we took it. So one day after the surgery we have a little guy that breathes comfortably and that looks so good.

Nick and I suctioned his trach for the first time today! They did an echo on his heart and the cardiologist came by to say that the defect in his heart is small and he doesn't need to be followed at all by a cardiologist. That was a huge relief. Right after that the hospital Chaplain stopped in to introduce himself as he made rounds through the PICU. We feel that God has been present in much of what has gone on here and we are so grateful for that. Prayers have been answered. But, don't stop praying just yet! We have a long road ahead of us. I have to sign off as the nurse wants us to help give him a bath. I am so so so tired and my feet hurt from standing bedside that I am a little hesitant to assist! I will try and keep the blog updated more as we are here in the hospital. Thanks for your prayers!