I have a heart baby….PART II

Once we knew it was Avery’s heart that was the problem the issue was figuring out exactly what the game plan was.  They knew he had a hole (along with pulmonary artery issues) but weren’t sure if it was a VSD: Ventricular Septal Defect – hole between the left and right ventricles or an ASD: Atrial Septal Defect -hole between wall that separates upper chambers of heart.  The ASD would need immediate surgery but the VSD would not.  He went in for his first heart cath where it was discovered that he had a VSD which meant that he did not need surgery immediately.  He spent those first couple days in the hospital on oxygen, a feeding tube and IV.  Seeing your baby attached to all those monitors…heart rate, temperature, oxygen saturations…is really hard.  It is hard to hold him with all those coming out of him too.  We had lots of visitors that first week of his life and we also had a 2 year old at home who we missed as well.  We did go home one night to stay with Blake.  It was supposed to be before they removed the feeding tube so that when I got back I could start working on nursing him.  Unfortunately the nurse did not hold off as she had promised so when we arrived the next day he had been supplimented with formula, which was hard for me and did not make me very happy.  But we moved on and started working on nursing right away.  It was a little more difficult than I remembered and nerve-wracking with a nurse standing over you trying to ‘help’ but we got the hang of it and once he was eating well he was sent home.

We were sent home and told to continue to get his saturations checked every couple weeks to check them.  We were taking him in to see his pediatrician, Dr Lon Knudson, to get weight checks and to check his sats(level of oxygen in his blood).  When he was about 2 months old we took him in and his sats were in the upper 60s (normal person is 100 and Avery was to stay in the 80s).  Dr Knudson was concerned with this number and called the cardiologist.  It was determined that we would have to schedule a surgery for him.

Surgery was scheduled for just before he turned 2 months.  This first surgery was a ‘textbook’ case according to his nurse.  Everything went smoothly and he only spent 5 days in the hospital.  Unfortunately after getting home Avery was just not acting like himself.  He was very fussy and had this popping noise (as if you were popping your elbow) but we called the hospital a couple times and they didn’t seem concerned.  Call it mother’s intuition but I just didn’t have a good feeling about it so I finally called our cardiologist.  He asked me several questions and had me put my hand one either side of his sternum and gently push to see if that was the popping sound.  It was not exactly something I was thrilled about but did it and sure enough that was the noise.  He suggested that we bring him in to have it checked out.  Apparently somehow the sutures they used to secure his sternum after surgery did not hold well enough and they had to go back in and fix it.  This time they put in wire to hold the sternum so it stayed in place.  Generally they don’t do that on little ones if they know they’ll have to go back in but apparently he was too strong for that!  So not only did he have one surgery at two months but he had to have two.  He was in the hospital for another two days before we got to go home and try to get back to normal.



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