I have to say, in my defense, I did tell my OB about my back pain when I went to see him last week and he said it was nothing (in his defense back pain is a pretty generic symptom). I didn't have any reason to suspect I had a urinary track infection till just about two days before I got really sick and then it only seemed mild.
Also I because I am pumping and trying to increase my supply I have been drinking way more water than I usually do. Is it enough? No. But way more than usual.
I spent from 8 am Friday morning till 8 am Saturday sleeping and taking pain meds every two hours and generally just feeling so crappy. I can't remember when I've last been that sick.
Your Granny says she remembers - it was when I had a kidney infection in '88. So I guess kidney infections and I don't mix well.
True to form 24 hrs of antibiotic and I'm back and running at 95% capacity. I did take it easy today as your Granny is here and taking care of you.
I didn't get to see you from Thursday night at 10:30 till Saturday at 10:30. Unbearably long time!
Thank god for your Granny. She has always been there for me, and for you. Did you know your Granny has been in your life from the second you were born? Just like she was with your brother. Here she is again at your bedside taking care of you, and at the same time taking care of me.
It's my greatest hope to be a great mother to you. That when you look back on your childhood and our relationship you can say - my Mom's was always there for me and I never doubted, for even a second, that she loved me, and always would.
I hope that you feel something like that, and if you do, we owe it to this woman. She's the one who taught me how to be a mother. She's the one who taught me to be everything I admire about myself.
I've always loved the saying "Everything I am, everything I will ever be I owe to my mother." Well everything I am, and everything I will ever be as a mother, I owe to my mother too.
I just wanted to make sure I told you that.
We are all settled into the NICU and are trying not to miss the CTICU too much (but it's really really hard) :/
The answer seems to be CHARGE syndrome. The major markers for CHARGE syndrome are;
1. Coloboma of the eye
Coloboma (sort of like a cleft) of the iris, retina, choroid, macula or disc (not the eyelid); microphthalmos (small eye) or anophthalmos (missing eye)
2. Choanal atresia or stenosis
The choanae are the passages that go from the back of the nose to the throat. They can be narrow (stenosis) or blocked (atresia). It can be unilateral (one-sided) or bilateral (both sides), bony or membranous.
3.Cranial nerve abnormality
Missing or decreased sense of smell and/or Swallowing difficulties and/or aspiration and/or Facial palsy (one side or both)
4.CHARGE outer ear,middle ear, and inner ear
Malformed outer ear, malformed bones of the middle ear, malformed cochlea
Minor characteristics of CHARGE are;
Heart defects Can be any type, but many are complex, such as tetralogy of Fallot
Cleft lip +/- cleft palate Cleft lip with or without cleft palate, cleft palate, submucous cleft palate
TE fistula Esophageal atresia, Trancheo-esophageal fistula
Kidney abnormalities Small kidney, missing kidney, misplaced kidney, reflux
Genital abnormalities Males: small penis, undescended testes
Females: small labia, small or missing uterus
Growth deficiency Growth hormone deficiency Other short stature 70%
Typical CHARGE Face Square face with broad prominent forehead, arched eyebrows, large eyes, occasional ptosis (droopy lids), prominent nasal bridge with square root, thick nostrils, prominent nasal columella (between the nostrils), flat midface, small mouth, occasional small chin, larger chin with age. Facial asymmetry even without facial palsy
Palm crease Hockey-stick palmar crease
CHARGE Behavior Perseverative behavior in younger individuals, obsessive compulsive behavior (OCD) in older individuals
This is how you get your feedings. You don't seem to mind
So here's what we do know
1. We found out yesterday that you do have a Coloboma in the back both your eyes. They don't believe this means you will be blind but they won't be able to tell how much, if any, your vision will be affected till your retina matures.
2. Based on the initial examination you don't have Choanal atresia or stenosis (narrowing of nose or throat). They do believe you have either a paralyzed vocal cord or redundant tissue on your vocal cord (one person told us right, one said left). The plan on doing a indepth examination of you sometime this week as soon as we can get a spot in the OR. We hope we might find a reason for your respiratory difficulties so we can get you off the vent and home!
3. You have the facial palsy and from what we read it wont go away. We don't know yet if you have a sense of smell or taste and are not sure how we will find out.
4. The shape of your ears are normal. You are scheduled for a hearing test this week. Fingers crossed your hearing wont be affected.
We know you have heart defects, and a cleft in your palate, but your kidneys are normal, your genitals are normal (bet your glad I shared that huh?), you almost 20 inches long (same as your brother a birth), and as far as we can tell you don't have the typical face of a CHARGE baby (the geneticist didn't feel you had any facial abnormalities either). I need to check out your palms tonight.
Someday maybe we will have an answer to all these questions for now the only one I really care about has been answered.
We will deal with the rest as we go.