Wednesday, February 6, 2013

Preston's Story

I didn't plan to share ALL of this but once I got started, I realized how wonderful it would be for the boys to read this in the future so I apologize for the length of this post. Many thanks to those of you who have encouraged me to share this. It is not easy to relive these details. Here we go.....

My whole pregnancy went great! Every sonogram was picture perfect and heartbeats sounded wonderful. Despite 4 ½ LONG weeks in the antepardom unit on bedrest in the hospital, I delivered 2 very healthy preemies at 34 weeks! It was a big accomplishment for me to make it this far. The only minor concern was Preston having extra amniotic fluid they call polyhydramnios (so I was extra big due to the extra fluid) and his heart rate dropped significantly a few times during my bed rest. Which is nothing major to be worried about. We were OVER THE MOON to have healthy twin boys. Both were great size (4.5 lbs and 4.8 lbs) and no oxygen required and just ng tubes. Tim did notice skin tags on both of the boys’ ears and Preston had a malformed right ear that appeared closed. We weren’t sure if he could hear out of that ear until the newborn hearing test would be done. We heard about a new amazing doctor (Dr Andrews) at KU Med Center who specializes in Craniofacial and could see Preston regarding his ear once discharged. Despite the deformed ear, it NEVER entered my mind that we would have ANY complications. Things were going GREAT! They both started nursing almost immediately and Preston was the stronger eater of the two. At 3 weeks of age, Preston started to sound ‘snorty’ while nursing and I asked for his nose to be suctioned. It didn’t help. A week went by and I knew something wasn’t right as the ‘snorty’ sound turned to squeaking and he started to develop a ‘different’ type of suck while eating. He was also not gaining as much weight like he had been. I was certain he was having trouble breathing while eating but his O2sats never dropped. Another week went by and now Preston was having trouble finishing his bottle during bottle feeds at night and it was evident something was wrong.  The nurses were trying different bottle nipples, feeding positions, more nose suctioning and NOTHING was helping. The dr’s didn’t seem too concerned so we weren’t either. They were telling us Reid was ready to come home in a week and Preston would follow a week or so later. We were excited and thought it was something Preston would outgrow. His nares were a bit smaller so a few dr’s discussed putting nose stints in his nose to help dilate them and open him up to breathe better.  Dr, Andrews would be the one to do this. The weight gain became a HUGE concern as another week passed so we asked for Dr Andrews to come and see Preston at OP Regional to check him out and see if he could see anything that would be a red flag for these issues. Possibly even put the nose stints in his nose. Unfortunately, he was new to the city and didn’t have privileges to work at the hospital yet so the only option was transporting P to KU Med. We said ABSOLUTELY! Anything to get answers and get out of the hospital, right? It had been 5 weeks of DAILY NICU visits and we were exhausted! Reid was now home, we celebrated Christmas in the hospital, and we were embarking on a NEW YEAR and wanted to be a family at HOME!

Preston made it to KU and Dr. Andrews saw him that same day. He was an answer to prayer and we instantly knew he was the dr we had needed all along! On a small side note…Reid apparently didn’t want to be left out, as he required double hernia surgery a few days after Preston was transferred to KU. We just couldn’t catch a break! It was determined that Preston would receive the nose stints and be scoped (to see if any other issues were going on in his airway) and if the stints didn’t help in a week’s time with his feeding/breathing issues, he would receive a feeding tube. I was devastated. A feeding tube??? It sounded so awful! I blocked it out of my mind knowing it wasn’t an option yet until the stints were placed. Preston was all set for the procedure on January 11th at 7 weeks old.  He was taken back to the O.R. that morning and we waited in his NICU room for the procedure results.  We saw Dr Andrews rushing into the room an hour later and told us news that would change  our lives forever. He said “Well, I wish I had better news but Preston didn’t tolerate being put under…….I had to do an emergent tracheotomy to save his life.” I didn’t even know what that meant. I just saw the look of devastation in his face and knew it was serious.  We had no idea this would mean nursing care for him for several years (night and day). We had no idea this would mean carrying a suction machine in a bag with him WHEREVER and WHENEVER we go places. He could not live without the suction machine.  We had no idea this would mean learning to suction him, do trache care (change the trache weekly), and hooking him up to a pulseox monitor every night incase he stopped breathing or had a plug in his trache. We had no idea this would mean breathing treatments morning and night and traveling with an ambu bag and portable oxygen tank incase of emergency.  We would slowly learn these things as time marched on but the phrase ‘ignorance is bliss’ could not have been truer that day.

Preston was given a 50/50 chance that night. We were told he was very sick but again, we just had no idea! His dr spent the night with him and he had a nurse bedside 24/7 with him. The concern was plugs and placement of the trache. One wrong move and his airway would be compromised. So they kept him sedated for several days and on a ventilator. Tim and my father-in-law went to see him that afternoon while I nursed Reid and decided to wait and see him that evening. I was in total denial and was focused on Reid. I know that sounds really neglectful but I was trying to manage post-pardom hormones, pumping for Preston, nursing a baby who was recovering from hernia surgery, and not wanting to face reality. It was my coping mechanism. If I didn’t see him, then it wouldn’t be as painful if he didn’t make it. I still can’t believe I was in that mind set at the time but it is what it is. I am not ashamed of this. I only hope to help another mother who experiences a similar situation and needs to know she is NOT ALONE.  After Tim came back from seeing him, he was full of tears and suggested I wait till the next day. He had had an ‘episode’ while seeing him and Preston turned blue and nurses came rushing and it scared Tim to death. He didn’t think I needed to witness that. So we went home. Day by day, Preston improved and we started to learn what our new normal would be. It was scary. It was frustrating. It was something Tim and I knew we could handle if we stuck by each other’s side no matter how stressful things got. We had our home health company come out and teach us about all of the equipment Preston would require and help us transform his nursery into a ‘nicu.’ We met our nursing agency supervisor who told us how the nursing staff works and who would be coming out to care for Preston day and night. Tim and I spend every day at KU for a month learning how to care for him, keep him healthy, and practicing suctioning and feeding him. He was still eager for his bottle which we were grateful for…….we were told many babies with traches refuse feeds by mouth. We did opt for him to get his feeding tube, which ended up being a great decision even though we no longer use it now.  He had a hard time finishing a FULL bottle for several months so we tubed it and he gained weight beautifully! We are keeping it in for his big tracheal resection surgery so he won’t have to need an ng tube. Once the surgery is over, we will have it out. Hooray! J A feeding tube sounded like NO BIG DEAL once his trache happened. Funny how things change so quickly! Preston came home on Feb 4th 2012 (almost exactly a year ago). We have several nurses for Preston that have become family and will be celebrating 1 year with us very soon.  An unexpected blessing for sure! We also experienced the horror of finding a night nurse passed out asleep in Preston’s room. It is all part of the journey. Time seemed to stand still for soooo long in the beginning and now it seems as if it slips thru my fingers like sand. There are times I wish I had a pause button when I see how precious this age is and how cute the boys are together. Then I wish I had a fast forward button when I long for normalcy on so many levels. God gave us this precious child for a reason and we know that someday this will be a distant memory. Today we are focused on making sure Preston receives the BEST of the BEST care for his future surgery to see a successful decannulation happen. We will travel unlimited miles to see that happen. He deserves it!