Colin's 1st year - His story of HLHS

This is long, sorry, I want to have written record of this.
With Colin’s 1st Birthday coming up in three weeks, I have been reflecting on the last year. How one year ago, we had no idea what was in store for us. I kept a pretty accurate record of Colin’s medical journey, though I might be missing a check up here and there. Though his condition does not define who he is, it has definitely shaped his life and the lives around him. For HLHS, the first year is not an easy one. We had our ups and downs, high & lows, but we are all very blessed by the outcome.
In the beginning I wasn’t even sure how to talk about his diagnosis without breaking down and crying, but now I want everybody to know how truly amazing he is.

April 3, 2009 – Arrive at hospital at 6:30am for scheduled c-section. Colin born at 8:00am. He had fluid in his lungs, common for c-section, so he went to NICU for observation. Was told he would be back in our room in about 6 hours.
April 4th – Colin still in NICU, fluid out but was breathing fast. Told very common, some babies have to learn how to breathe when come out of womb. I remember being in the NICU looking at all those small babies, thinking we had it easy, Colin was just there to learn how to breathe. Those other babies are in need of so much more, I just had no idea.
April 5th – Still in NICU, breathing fast, hear murmur which is common, held for observation. We were told if he slows his breathing, we will be going home. Katherine visits her baby brother for the first time.
April 6th – Echo Done. Found out Colin has serve heart condition and will need surgery. Colin transferred to Texas Children’s by ambulance, Matt & I get discharged from hospital and met him over there. Colin admitted into NICU at TCH, they go over his surgery requirements and his condition. Told Colin will not survive unless he has these surgeries.
April 7th – April 12th – Colin in NICU at TCH awaiting heart surgery # 1. We spend our time sitting by his beside all day into the evening and spending the nights with Katherine. Katherine got a runny nose and was not allowed to see Colin before his surgery.
April 13th – Colin had Norwood procedure, in surgery 10 hours, one week after being diagnosed. We said goodbye to him at 7:30am and got to see him at 8:00pm. What a long day!
April 14th – April 24th – Cardiac ICU, Colin had to stay a little longer. They had to go back in his chest and drain excess fluid out. Colin has many “roommates” over this time.
April 25th – Released out of Cardiac ICU into Step – down care. Moved to 15th floor into our own room. First time Katherine gets to see her little brother since he was transferred to Texas Children’s.
April 26th – May 11th – In our own room working on healing from surgery, feeding skills, and gaining weight. Must be able to eat & gain weight before released. Colin turns 1 month old.
May 12th – Released from hospital – FIRST DAY HOME. We now have to record everything Colin drinks in mls, record how much we think each spit up is (mls), weigh him and take his pulse ox everyday. We have to call the hospital if his pulse ox is below 75 or if he does not gain weight in 3 days. Colin came home with 5 medications (lasix, reflux, propanolol, enapril, and aspirin) that have to be given multiple times around the clock, even in the middle of the night. Katherine very happy to have her brother home.
May 15th – First visit to Single Ventricle Clinic at TCH
June 12th – June 14th – Hospital Stay due to reflux and low O2 sats
June 26th – Single Ventricle Clinic
July 6th – Maternity leave ends, Jennifer back to work. My mom watches Colin while off for summer break.
July 17th – Single Ventricle Clinic
July 31st - Single Ventricle Clinic
August 3rd – MRI, Colin put under anesthesia. Colin turns 4 months old.
August 6th – 2nd surgery, Bi-directional Glenn scheduled for Sept. 15.
August 14th - Single Ventricle Clinic
August 17th – My mom goes back to work, watching Colin will now be split between the grandpas’s with help from the grandma’s on certain days
August 25th – Surgery moved to Sept. 14
September 2nd – Meeting with Dr. Heinle, Colin’s surgeon. Went over expectations of the surgery, recovery, and life after the Glenn.
September 8th - Single Ventricle Clinic
September 12th – Packing for hospital, Colin’s surgery moved again, now to September 17th. We felt blessed though, Colin was pushed back for a child they didn’t think would survive but Colin was doing well enough to get bumped.
September 16th – Admit into hospital, pre-surgical work. Jennifer and Matt off work for surgery. Katherine visits Colin that night to give him good luck kisses
September 17th – Colin’s Bi-Directional Glenn. Said our goodbyes at 9:00am and got to see him about 3:00pm. PaPa Wayne’s birthday.
September 18th – Sept. 20 - Cardiac ICU – Colin had really bad headaches and was only happy if being held, which was no problem for us, we missed holding him.
September 21st – Moved to 15th Floor. Matt had to go back to work.
September 22nd & 23rd – Working on feeding and gaining weight.
September 24th – Released from hospital, went home. Uncle Russell’s birthday. Sent home with 5 medications.
September 29th – Jennifer back to work, PaPa daycare continues.
October 6th – Single Ventricle Clinic – Stitches out.
November 5th – Cardiology Appointment, 1st time with his own cardiologist and not the Single ventricle clinic. Had ECHO, Chest X-Ray, and EKG. No more weighting or taking O2 everyday
November 11th – RSV Shot
December 9th – GI Appointment – To determine if Colin’s serve spitting up was just reflux or a GI issue, ruled reflux.
December 17th – Admitted into ER at 12:30am for croup. Colin was wheezing and laboring to breathe, sats went from 90 to 80. Held 6 hours for observation, given a steroid shot.
December 21st – RSV shot
December 31st – Cardiology appointment
January 22nd – Meeting with occupational therapy to work on solid foods and gag reflex
January 27th – RSV shot and ear infection #1
February 8th – End of PaPa daycare, started his first day of real daycare
February 10th – High fever, ear infection back
March 3rd – RSV shot, ear infection still there, given 3rd dose of antibiotics. Colin turns 11 months old.
March 8th – Colin off of reflux medicine. Will also be ending propanol next week, so we will be down to two medications. Enaipril in the morning & evening and ½ tablet baby aspirin in evening.