Tuesday, February 10, 2015

CHD Awareness Week- Our Story - Part 2

Ok, Part 2...the broken heart.

Surgery was imminent, as they explained to us before he left us, that he would be requiring emergency surgery.  My biggest fear is that I would be stuck in recovery, while my newborn child had open heart surgery.  Thankfully, they told us he would be having surgery sometime the following week, that they could keep Liam's heart pumping with a medication....more on that in a minute.

While Liam was getting all settled in at the city hospital, I stayed to recover back at our local hospital.  The nurses let me keep my epidural in that night, just so I could get some rest, knowing how stressful the past 12 hours had been for us.  I was grateful for this.  I did have some pretty major tearing during labor, as they had to use the vacuum extractor to get Liam out, after a solid 3 hours of pushing.  Needless to say I was exahausted.  Then throw on a diagnosis like we had, I was physically a bit of a disaster!  However, God was good and put great nurses in my path during my recovery who encouraged me to start pumping milk.  And that was my focus the next 24 hours of my recovery and the next few months...pump my heart out for my little boy.

3 days after birth, before surgery
Meanwhile, Liam was undergoing some testing and received another echocardiogram.  This gave our cardiologist, Dr. Verma, information to make an official diagnosis: Tetralogy of Fallot with Pulmonary Atresia.  This is a combination of 4 different defects, with 2 major ones that require immediate surgery.  Basically Liam's heart was completely absent of a pulmonary artery and also had a large VSD.  They were keeping him alive pre-surgery by giving him prostaglandin, which kept his PDA open.  The PDA usually closes within a short time after birth, but this was being used in Liam's heart as a bypass to his Pulmonary Artery, so it was imperative they keep it open.

One of our first family pictures
Liam underwent his first open heart surgery, to place a BT Shunt, when he was 5 days old.   The shunt was used to bypass the pulmonary artery while still providing blood flow throughout the heart.  Because the shunt causes oxygenated blood to mix with unoxygenated blood, Liam's O2 saturations would be low until he was big enough for his next surgery, sometime around 8 month - 1 year.
Morning before 1st open heart surgery, October 5, 2009

Following 1st open heart many machines and meds.
In recovery after 1st heart surgery

Liam flew through surgery with little to no complications.  He was in the NICU for 23 days…released on my original due date, October 23.  The only real complication he had was a paralyzed right vocal chord, which caused aspiration issues with his feeding.  We were discharged on NPO orders {nothing per oral} only being allowed to feed Liam through an NG Tube.

Our arrival home for the first time as a family was bittersweet.  It was overwhelming to be responsible for such a daunting task of caring for a newborn, let alone not be able to do things "normally".   For the most part, Liam tolerated his tube feedings fairly well, and we were able to keep him on a “normal” feeding schedule. However,  four months later and multiple swallow studies later, after using an NG tube for all feedings, we decided to have a G-Tube placed, as Liam's aspiration issues did not improve, nor did his vocal chord recover.  He had his G-Tube surgery on January 19, 2010.

Going home! October 23, 2009
That spring we also realized how a simple cold could turn into a hospital stay, something the doctors warned us about when we brought Liam home for the first time...that anything he caught could turn into a bad situation, fast, because of his heart and low O2 sats.  Devising a schedule and plan to keep him home 24/7 {thanks to my amazing dad and mom for watching him day in and day out for us that first year} it was still not enough, as Dustin and I both had to work full time outside the home, and thus risked exposing ourselves to viruses and such.  We took him to the ER one April night due to "dusky" color and wheezy breathing to find out his O2 sats had diminished into the 40's and required immediate admission.  That was a frightening night for us. Although he made a full recovery, we had to reschedule his full repair surgery to summer because of his illness.  That "full repair" summer surgery was a rough one.....stay tuned for tomorrow's post!
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