New meaning to February 14...

With Liam 24 hours old and in the NICU, there was a lot to digest and learn.  When we arrived on Tuesday afternoon, the hospitalist and attending nurse were checking out Liam's central lines.  He needed a platelet transfusion, that is what won his helicopter ride down to Phoenix Children's Hospital.  The best way to get blood in and out of his system was to put central lines through his umbilical cord.  So the first image we have of Liam that day was this little belly with white and black paste over the area of a belly button.  He had monitor leads for his respiration, heart beat, temperature, the whole shebang!  Sean and I learned quickly how to hold Liam through the lines but I don't think either of us got used to the constant bing of some monitor coming loose or us moving too quickly.

Something alerted the doctors that there might be something going on with his heart so with in hours of us arriving, a tech was checking his heart.  Thinking back there must have been an O2 read that was low, I did hear only one doctor thought they heard a murmur.  Of course the tech couldn't share what she was learning about our son, but the wait to meet a doctor felt like a life time.  The next morning when the medical team was doing their rounds the lead doctor let us know that a cardiologist would be meeting with us once they were done.
Being in the hospital was one thing, being in a NICU was another, I couldn't seem to catch up to all the information coming at us nor could I gauge how 'bad' things were.  The nurses were all so thoughtful and pleasant but they made sure to stay away from sharing too much about Liam other than his immediate care.  I have to admit, there were only a couple of people in my past who had Down Syndrome, one was a young man in Williams who attended school and another was a young man I taught how to ski at the Special Olympics.  I never knew that 50% of kids diagnosed with Down Syndrome have a heart condition.  Almost 75% have a thyroid issue, some have eye concerns, some have ear concerns, there are so many ways the extra chromosome can play out.


Liam's heart had what the doctors call an AV Canal.  His left and right atriums were open to each other, there was a flap of skin that helped keep the left and right ventricles separate when his heart beat but there was some oxygenated and deoxygenated blood mixing.  He also only had one valve that separated the atriums and the ventricles instead of two valves.  The heart surgery he had in April 'fixed' these anomalies (I put 'fix' in parenthesis because to me Liam's heart didn't need fixed,  it just needed support).  He now has a 4 chamber heart with 2 valves and what we call an upside down heart beat (due to the way his system compensated before surgery).  His cardiologist is pleased and excited with Liam's heart and his healing.  February 14th is congenital heart defect awareness day so today we celebrate more than just love, we celebrate Liam's heart, we celebrate the effort and persistence that Liam had to pump blood, grow, and live for 7 months with a heart that needed just a little bit of support.  The condition Liam has is one of the most common cases that show up for kids with Down Syndrome and seems to be an easier 'fix'.   Today I celebrate the love I share with Sean, and we celebrate the heart and soul our son has to live!

Home away from home...

There is a story that at 5 I declared when I grew up I was going to be a nurse.  A dear friend gave me her baby doll that had a hole in her knee and a red marker streak on her other knee, so I could 'nurse' this doll back to health.  I put a band aid on her knees, and would swaddle her to keep her warm.  I loved this doll and she became a reminder to reach for my dream of being a nurse all the way through high school.  Even in college, I was signed up as a pre-nursing student and met some amazing friends, learned valuable lessons, deepened my love for the body and how important the symbiotic relations are with microbes, our environment, and the different body systems.  When I was applying for nursing school, I missed a deadline due to not checking my mail, then applied and was a runner up to get into the program.  I decided to travel with my mom and not wait by the phone all summer for the acceptance call or not get the call and need to reapply in the fall.  I had a conversation with my roommate at the time, and what came of that conversation was that what I loved about nursing I wasn't going to get the chance to explore in hospital nursing.  I didn't want to spend time in a place full of people who didn't want to be there, working with people who didn't want to be there.  I wanted to help people stay out of the hospital!  So through a series of deductions, massage came up as a way to pay for naturopathic medical school.  As I did more research in the naturopathic medical world I decided that I wasn't sure about that avenue but massage stayed and I have had a career as a massage therapist for the last 14 years.   Sometimes I will get curious if I should go back to school for nursing and the feeling comes up of ugh, NO!

What is ironic is being Liam's mom, I get teased that I have an honorary nursing degree.  I have assisted a friend take staples out of my cesarean incision, monitored Liam's vitals, help take stitches out of Liam, monitored oxygen levels when he was on oxygen, many different kinds of wound care for him, NG tube placement, administered medications, worked with his doctors to trouble shoot symptoms, sat in on echo cardiograms, chest x-rays, swallow tests, sat in waiting areas for surgeries to be finished, and spent a few nights in the hospital.  I even consoled a mother taking a tour of the cardiac unit when Liam was still recovering from his heart surgery.  I guess my 'nursing' doll was  practice for being Liam's mom.  Today, Liam had a post operation appointment for his g-tube placement surgery, I was given one more honorary nursing duty, checking the fluid in the balloon keeping the G-tube 'button' in place.  Phoenix Children's Hospital has become a second home for our family.

Coming from our rough and traumatic hospital experience here and arriving at Phoenix Children's Hospital I finally felt safe...I felt that Liam was safe!  After a week of being in the hospital the medical team came into Liam's space to let us know that Liam could be discharged, our hearts soared, until the doctor told us he would be air transferred back to Prescott Valley until his platelets returned to a healthy level.  Our hearts immediately dropped and a sense of panic came over me, Liam couldn't come back to Prescott unless he was coming home, to us.  We voiced our concerns and looks were exchanged amongst the medical team.  A nurse came back to us after everyone had left and reassured us, Liam would stay at the Phoenix Children's Hospital until he could be discharged to our care.  The next morning Liam's platelets were at a healthy level and by mid-day we were discharged, we were able to come home, ALL of us, together, as a family.

When Liam had his first heart procedure, the doctors looked me in the eye, they talked to me when I asked questions.  Up here talking to doctors a lot of times I would ask the questions and Sean would get the answers.  This is comical because half the time Sean wasn't paying attention to the conversation, he was more interested in playing with Liam.  Now I receive phone calls from doctors, medical assistants, nurses all checking in on Liam, making sure we receive all the information we need about whatever event is coming up or I am given the results of whatever test might have been done.  I feel like I get to participate in Liam's healing, I am valued as his caregiver, his mother.  The medical team who helped Liam recover after his heart surgery were top notch!  Being in a hospital for a week straight, was not easy and yet, having such loving, attentive, educating nurses helped ease the discomfort of having our baby so vulnerable.

Being a parent of a patient at Phoenix Children's Hospital has been an empowering experience, I have learned how to advocate for Liam, to question and seek answers if I don't understand something or if something seems amiss, to learn the uncomfortable tasks of wound care, and how to take pride in the care we provide for Liam.  If a hospital is to be a second home, and I think that is our fate for now, we have 3 appointments this month, I am glad we are at such a great hospital.
AND I am grateful for massage and the other healing modalities I practice are so complimentary for Liam's healing.  The effects of the healing modalities done with Liam have been noticed and mentioned by the doctors, nurses, physical therapist, speech therapist, and medical assistants.  Even though I can't keep Liam out of the hospital I am proud that I can help support his body's healing, and help keep him healthy through all the hospital interactions.  I guess I get to participate in the best of both worlds, what a blessing!