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!
