When we found that we had to take Timothy to Seattle to see a Pediatric Cardiologist (PC), I sat up the night before & wrote this note for them. I wanted them to know *all* about our baby & I was afraid in the stress of the moment I may forget. After Dr. Herndon read this he looked at me and said "This is such a perfect example of congestive heart failure I could put it in a book".

Oct. 1, 1995
Timothy was born emergency c-section due to occult cord prolapsed. The first night that I was able to breast feed and help to care for him (24 hours old) he was awake screaming every 15 minutes. I fed him & he continued to cry. Nothing seemed to comfort him. This was to go on for months during the day. At night he'd wake every 2-4 hours. (I felt this to be the norm for a newborn) Almost always this baby seemed to groan and grunt. It was as though he was trying to have a BM but wasn't. (he's never had problems having a BM) We always felt that somehow he was not feeling well. (so unlike our other 3 babies were) We took Timmy to a couple of drs. here at home and the public health nurse. Colic seemed to be the probable answer. We tried colic medication & still nothing made him comfortable. This went on for six months or longer. He often would scream for 2 hours straight. As he got older it slowly got better, but he is still much more fussy than any of our others.

When I breast fed Timothy (birth to 12.5 months) he never nursed for longer than five minutes per side. The usual time for his feeding was 3 minutes per side. The dr. said that my milk let down so fast that he didn't need to nurse longer. (he had his fill & was done) At times Timothy was in the 5% for weight and other times he's not even on the charts. He has never seemed to like any texture to his food & will not eat the normal table food we eat. At seven months I tried (Gerber) baby meat and he vomited as he's done many times with different textures. I cannot get him to eat fruit, vegetables etc. Right now he will eat 1/4 to 1/2 peanut butter sandwich. He'll drink from 2-4 ounces of whole milk several times a day and maybe one 6 ounce container of yogurt per day. If he won't eat something else, I'll basically try to force a yogurt & milk down him. Now a lot of times he'll just throw it on the floor & turn his head if you try to feed him. He will refuse almost all foods. Also, when breast feeding he seemed to sweat extremely bad. Like he was really getting a "work out" while he ate. His little head at times was so wet that I have run my hand across it and sweat would drip off my hand. His face would bead up etc.

I have asked everyone that I've taken him too, about his chest as it seemed like the shape was different. The front kind of pushes out & the xyphoid process area seems to stand out so far. His breathing has always seemed so fast and short & almost raspy. It's been checked and ws said to be "something he is doing~ it's not in his lungs". Nobody was concerned so I tried not to be also. The Dr. asked us this past week if he had ever fallen as he has separated ribs. He has never fallen that I know of. (a couple tumbles from the couch but never on his chest)

One thing that we have noticed for so long is Timothy's complexion. He has had a yellow or orange tint to his skin. Many friends and relatives have mentioned it, many in just passing on the street. I asked the health nurse who looked at his eyes, checked his liver and said it was probably the beta carotene in his vegetables. After not seeing the baby in a few months, we saw the Dr. up town one day. I expected him to comment on his size but instead he said "He's yellow- what's going on"? I told him what I had been told & he looked at his eyes & agreed... beta-carotene. This nagged at me & I took him to a pediatrician next. (Dr. Rosenfeld/Callisto Pediatric Clinic-Ketchikan) This is when the murmur was first detected. The dr. also agreed with the others on Timothy's coloring, said that his fussing so much & grunting/groaning was because he suspected the baby was a "closet spitter" and was spitting up, swallowing & living with heart burn. He suggested we go get this murmur checked in the fall to keep an eye on it. We took him to the health nurse for his vaccinations and it's gone from there.

Timothy doesn't use words yet, but gets across his needs. Other than the questions I've mentioned above, he has been wonderful. He's only now on his 3rd. cold (2 this past month). To me, he seems to be where our other babies were at this age except for size & speech. But I have had more concerns about Timmy than the other three. I have said many times that I felt there had to be more than meets the eye. He was not acting normal. But everyone I took him too said he's fine.
Can any of the above be tied in to what we're dealing with today??