Last week we seemed to see a pattern emerge: nap for one to two hours, play by herself for half hour, entertain her for hour to two hours and back to sleep. It was a nice routine and I have to say I enjoyed working at home with minimal crying throughout the day. Enter Wednesday's pediatrician appointment. We got some measurements: she is back over ten pounds after her latest hospital stay and is twenty two inches. Then we found out we got the go-ahead to start vaccinations from our cardiologist. She got two shots, one in each thigh and she did very well. She screamed her head off, but as soon as I was able to pick her up she calmed right down. Our pediatrician said she could be a little fussy for the next twenty four hours. I guess we have a different idea about what 'a little fussy' means. She was up at 3 am that night and crying which continued through Thursday day and into the night. Mike and I should have known, but instead we started to freak out a little bit. Apparently it didn't even occur to us that the vaccinations would make her this fussy. But at our cardiology appointment on Friday, both Angela and Dr. Husayni waved off the craziness and were positive it was the vaccination. We'll be ready for the next round.
The cardiology appointment was good as well. We got another x-ray to checkout her lungs. I was able to see the x-ray from her hospital discharge. The difference was night and day, all fluid was gone. We had an echo as well and she slept through most of it, although it took me about ten minutes to get her to calm and finally fall asleep. After they reviewed the echo, Dr. Husayni and Angela came into talk to us about what they saw. The squeeze of Lucy's heart has decreased a little more. As Dr. Husayni is talking to me, I am staring daggers at Angela waiting for them to say the dreaded words: 'We are going to admit her'. She catches me and says we are NOT admitting her. Phew. Instead they added a new heart medicine to help the squeeze of her heart. We a fourth medicine to add to her routine.....digoxin. A lot of HLHS kids go home on digoxin after the Norwood. This medicine can lower the heart rate and at the time of her discharge Lucy's heart rate was dipping into the 90's when she would sleep, so she was not sent home on it. We were told that the decrease in heart function can happen after the Glenn and this medicine will help. We will have another echo at our next appointment to see if this medicine is helping. The sad part is that due to adding this medicine Dr. Husayni did not want to make any other changes, so unfortunately the oxygen stays. And if I'm being realistic, we will probably be on oxygen for at least another month. Sigh.
Last but not least, Lucy is six months old today. Happy Birthday little girl.
Just a peak into her short life so far, 182 days on this earth.
118 days in the hospital
3 open heart surgeries
5 times intubated
2 catherizations
8 cardiology appointments
3 pounds at birth, now 10 pounds (tripling her weight)
16 inches at birth, now 23 inches
countless x-rays, echoes, IV's, and blood tests
and finally the biggest....we are finally out of newborn clothing and onto 0-3 month.
I wish I had kept track of how many miles we have driven, but at the beginning I surely did not anticipate our journey would take us where we are today, but we wouldn't trade any of it because Lucy is amazing.
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