We were impressed with the Clinic for Special Children and with Doctor Morton.
The atmosphere of the building and of the staff we met was warm and relaxed. Doctor Morton struck us as being somewhat of an eccentric maverick type, with a very intelligent and inquiring mind. He spent about two hours with us, and did not talk down to us (that we could tell, anyway, haha). We also noticed that he treated his nurse like an equal partner, and not like an inferior. We deduced from his frayed shirt collar (and his low fees!) that he was not materialistic.
We were reassured by his manner toward Verity. He talked about “getting to know her” in the months ahead. We would have expected a specialist to stand back and tell us to undress the baby, but he did it himself, talking to Verity all the while.
In short, we liked him.
The nurse tested her oxygen saturation levels using a pulse oximeter, or pulse-ox. A healthy person would have close to 100% oxygen saturation in their blood. This means that the blood is fully saturated with oxygen, not that the blood is made of 100% oxygen. It is similar to humidity levels. If the humidity level is 100%, this means that the air can’t hold any more water, not that the air is made of 100% water.
When Verity was in the NICU being observed, her levels stayed around 85% unless I was holding her. When I held her, her levels would hover around 90%, which just means that she was more relaxed when I was holding her. I was also holding her at the doctor’s office, and again, her levels were 90%. Ordinarily, anything below 90% is cause for concern, but Verity’s levels are consistent with her heart defect. In other words, her levels are exactly what the doctors would expect them to be right now.
Doctor Morton checked her over and showed us all the features that she has that are consistent with Down syndrome. We had already seen them all ourselves. I have another post in the works that will be a sort of photo tutorial for those of you who are curious, like I was, about what some of these common features actually look like on a newborn. The newborn being Verity, of course. They look very different on her than they do on a clinical checklist!
Keep in mind that there is a long list of features that can come with Down syndrome and not every individual has every feature on the list. Also, some of the features can be found in the general, non-Ds population. I know that can be confusing! One of the features Doctor Morton looked for on Verity that he did not find was a large tongue. That was something we hadn’t known.
He asked whether we’d had the hearing screening done. We had not, since the hospital was charging $250, and we knew our midwife’s assistant would do it for $50. He said he was flabbergasted that the hospital was charging so much, since he happened to know that the machine they were using was state-issued and inferior. He said that the machine the midwife’s assistant was using would be the same. Since Dr. Morton was instrumental in having Pennsylvania offer newborn screening tests, he knows whereof he speaks. In addition to this, since Verity has the small ears that people with Down syndrome often have, with very tiny ear canals, those inferior machines would be absolutely useless to tell us anything about her hearing.
The machine they use at the clinic for hearing tests is the same high quality that an audiologist would have. And the clinic doesn’t charge anything for the testing! So Verity has an appointment for her hearing test on Tuesday, the 13th.
He listened to her heart and did not hear a murmur. He said he fully expects to hear one by the time she comes back in for her next visit. His stethoscope was cold, and he apologized to Verity. She surprised us by trying to push his hands away. Remember the spunky girl we met by ultrasound back in April? The very same.
He said her liver is already enlarging due to the pressure being put on it by her heart.
He said that he will absolutely see the beginning signs of congestive heart failure by her next visit on the 19th. We were surprised that her condition would deteriorate so quickly, and were very glad to be prepared. He told us what outward signs we should be alert for, and to let them know if we are concerned by what we are seeing before that appointment. He said that the first step would be to give her the medication called Lasix.
He did say he is not a big fan of putting the heart surgery off arbitrarily, since children do so well after surgery compared with before, and that waiting too long can cause damage to other organs. From what we’ve read, they prefer to hold off surgery until a baby weighs ten pounds, as the success rate is higher by that point or after. This makes sense when you consider that the heart grows with the rest of the body, and the larger the heart, the easier the surgery is for the surgeon, all else being equal.
The signs of congestive heart failure he wanted us to look for are~
Retractions (labored breathing with her abdomen pulling in under her ribcage with each breath), sweating (with any exertion, like nursing), poor growth, cool extremities (hands and feet), pallor (poor color), rapid respiration rate, and low energy (wears out fast).
She already has the sweating while she’s nursing and the increasingly low energy. I think her color is still pretty good as long as she’s relaxed. Her resting respiration rate (how many breaths she takes per minute) was around 30 in the NICU and about 50 now.
I am holding myself back from weighing her too often. She did show a loss between Friday and Saturday, but we’ll see what the new week brings. I am very motivated to do all I can to help her grow now before the heart failure sets in. I have been having to give her more of her feeds with the syringe, just because she wears out so fast when she nurses, and doesn’t get enough for her effort. For instance, she might give two or three strong sucks, then rest for twice as long as she just sucked. And that is when she actually wakes up enough to latch on and nurse, which is about twice a day. It’s taking about 40 minutes to syringe feed her 2 1/2 ounces, and longer in the middle of the night when all she wants to do is sleep. We’re beginning to think that we should have a plan for what to do if she refuses to eat at all. If that happens, it will likely be in the middle of the night, the way nights have been going. So I’m planning to call the Clinic and ask that question.
Doctor Morton wanted us to bring her back in to see him on Monday, the 19th. On that day, a pediatric cardiologist from Hershey will be there, although his schedule is already full. Doctor Morton said to bring her in anyway, and that he would do the preliminary check-up himself and have the echo done, and then if the results of these gave him any concern, the cardiologist could certainly spare ten minutes to look at her!
So that’s the most current update and plan. If you made it all the way through this post, thank you so much for reading!