I feel like all I’ve done over the past two weeks is sit in doctor’s waiting rooms.
Elanor has had Five doctor visits and one visit from the home nurse. I’ve had three therapy appointments, an appointment with the post-partum psychiatrist, and two allergy shots. From Jan 5 through today, we have not had a weekday where we haven’t seen a medical person of some sort.
Which is exhausting.
These were all necessary visits, but it’s been a lot of information in a short period of time, and digesting it has required a lot of energy (and time off from work for my husband). Luckily it has been largely positive, so I can’t really complain.
First of all, the best news we have received in this new year–Elanor has NOT suffered any hearing loss. Apparently it is very common for babies who have spent significant amounts of time in the NICU or the PICU to be nonresponsive to sound. Which, when you think about it makes a ton of sense. Normal babies don’t have people coming in and out of their rooms at all hours talking to their trailing med students and residents. Healthy babies don’t spend three weeks hooked up to a monitor that is constantly monitoring heart rate, blood pressure, oxygen saturation, and pulse rate–the constant beeping and multiple times a day alarms. Healthy babies don’t have the alarm going off when their medication/IV is five minutes away from being done and again when it’s done. In short, healthy children aren’t innundated with sound the way that Elanor was in the first month of her life. OF COURSE finger snapping, hand clapping and even a smoke detector going off (my husband forgot to turn on the over stove vent fan) aren’t interesting to her…she heard much louder on a regular basis. It’s just not impressive to her.
If you’re interested, yes, I still plan on doing baby sign with her. I’m doing just “milk” right now, and we’re probably going to do two or three others. However, at two months, it’s more for us to get us used to doing the sign than any developmental readiness on her part-and yes I do know that.
The second best news was from this past Monday’s two month well baby visit. Having dropped Elanor from 24 calories per ounce to 22 calories per ounce, she had gained 11 ounces in two weeks. This was enough for our pediatrician to give us the green light to stop supplementing altogether. The Lactation Consultant is coming Saturday because at this point Elanor seems to have forgotten how to latch altogether and just freaks out when I try to put her on the breast. I have faith that she can learn how to, but I have no illusions (and much fear) that this road is going to be long and difficult…and that it will require much patience. She took her shots well, and had a small fever, but nothing that cuddles and some doctor approved baby tylenol didn’t cure.
The remaining three doctor’s appointments and the home nurse visit were, of course, related back to her infection, the septic shock, and the stroke.
The home nurse initially came three times a week, then twice and will now be coming once a week to take E’s blood pressure, as E is on a blood pressure medication and needs monitoring to make sure that the dosage is staying current to her needs.
We saw Pediatric Neurology last Friday and they were VERY pleased with E’s progress. Her preference for her right side is balancing out (it is abnormal to have a side preference at her age), she is less stiff than she was when hospitalized, and she is doing all the things that healthy babies do at two months like lifting her head and cooing.
We saw Pediatric Nephrology (the kidney doctor) on Tuesday and had a slight adjustment in her medication done, as well as discussing the plan to wean her from the blood pressure meds. The reason that the Kidney doctor is in charge of blood pressure medication, as opposed to cardiology, is that apparently in infants hypertension is almost always caused by a kidney malfunction and not a cardiac one. We have had her heart ultrasounded as recently as last month and it is totally normal. Thus far her kidney’s have been normal as well, and it is assumed that the hypertension is residual from the hit they took when she was in shock, and that as her body grows and finishes healing that the hypertension will dissapear.
Today we met with the Pediatric Stroke Team, which consisted of a hematologist, another neurologist (examining E’s case from a stroke perspective as opposed to the regular neurologist we see who is making sure that she is developing normally) and a developmental Psychiatrist. They are confident that they understand why she had a stroke and that she is not in any danger at this point of the bleed repeating. The short version that I understand and took away is that when she started getting sick, her body used up all of its clotting factors (which they could see in the blood draws done while she was in the ER or the PICU that first day) and it took three to four days for her numbers to normalize, which is why the bleed happened on day two in the hospital. There really isn’t anything that could have prevented it as E was getting platelets and red blood cell infusions multiple times per day in those early days. The most important thing is that the window for it re-appearing is over, and the imaging that was done only showed improvement and not further bleeding. They noticed that she had been very anemic and did a heel stick to check and see if she still is (and if so, hematology will want us to give her iron supplements in the short term). They want some additional blood drawn, but we requested that it wait until E has blood drawn for the Gastroenterologist in a few weeks as she is a hard stick and has had more than enough needles in her life already. We will meet once more to review test results, and they think that we won’t need further follow up from them other than a Developmental Psych eval before she starts pre-school (which is basically the kind of evaluation done to check for any kind of learning disability, developmental delay or special need that isn’t physical) when she’s in the neighborhood of 2-3 years of age.
While I am an atheist, I grew up Catholic enough to want to say that Elanor must have one hell of a guardian angel…or at the very least should never gamble as she seems to have used up all of her luck for her lifetime.
It’s far to early to say anything definitive, but Elanor may have left this experience with little or (fingers crossed) no long term effects (other than some white hairs on me beneath the hair dye).
As for me, the PPD is manageable at this point and the good days have outnumbered the bad since my last post.