We had a VERY good two days. On the 4th day we started out talking with the surgeon again and the conversation went much better. He was less aggressive about surgery talk and even told us it was looking like we wouldn’t need surgery next week. I am wondering if maybe he had a talk with the cardiologist??? Hmmm….
Speaking of the cardiologist if there is anyone out there who is reading this blog that has a child with a severe heart defect (Especially Heterotaxy) I highly recommend speaking with Dr. Patel at Akron Children’s Hospital. We are extremely lucky to live so close to a cardiologist who has actually written most of the literature that exists about Heterotaxy. He has also been one of the most sucessful at diagnosing Heterotaxy in utero. Which I have come to understand is a very hard diagnosis to make. A lot of mom’s have told me they didn’t find out exactly what their babie’s condition was until after they were born. And really all of that would be meaningless if the following was not occurring….
EVERYTHING and I mean EVERYTHING that he told us before our child was even born was going to happen has so far happened. We have 8+ Dr.s all giving us different information (not to mention dozens of NICU nurses) and Dr. Patel is the only one who has nailed Logan’s condition. He knew exactly what his oxygen levels were going to be and how they were going to trend. Even predicted accurately how all the other Dr. were going to respond. Not to mention he has been the most calming and patient Dr. we have met with. He is incredibly detailed, and explains everything so clearly, and is really good with handling all our emotions. My husband and I talk all the time about if we didn’t have Dr. Patel we would be in a completely different situation and much more confused. Everyone can rattle off opinions all they want, but Dr. Patel is the only one who has actually been correct.
I can’t even begin to know how he just fell in our lap. I have never believed in things being ‘meant to be’ or ‘happening for a reason’, myself being very pragmatic, but I can’t help but think now that this is such a HUGE coincidence.
And a message to Dr. Patel (if he ever read this) I just want him to know that he will have forever changed how I view this life and our journey in it.
Anyway, back to Logan…
He is eating really well which we were told was going to be the one thing to keep him in the NICU. Breast feeding has gone extremely well. Usually when we bottle feed it is because he gets so cozy breast-feeding that he falls asleep and because they are trying to monitor feeding amounts they want certain amounts taken in certain time frames and so we wake him up and just finish with a bottle to get the milk down and keep him on his every 3 hour schedule.
His last IV was taken out, so all he has now is a feeding tube in thru his nose. And the only reason why they are keeping it in is just in case he stops eating well they don’t have to put it back in which is uncomfortable for him. He has external monitors on his chest and feet but that is it. Otherwise, looking at him, you would never know anything was wrong with him.
He is so sweet and easy-going, just like Ethan was at birth. Two of the NICU nurses were saying he gets the cutest NICU baby award. They said ’53 babies in here and he gets the award.’ I am sure they say that to all the parents but it’s still nice to hear.
If everything keeps trending in the way it is currently we were told he could come home sometime next week.
I was discharged last night from the hospital and am at home now.
It feels really good to be home and sleep in my own bed.
