My kids look just like my sister Cami. No complaints here!
As you can see, this little darling has started smiling (as of Monday morning). But she’s a little stingy. When I asked her to smile for the camera, she gave me these faces:
But then she said, “Jokes, Mom! Loosen up already.”
After a dramatic beginning to the week, we were overjoyed to get Lily’s test results back. I tried to hold her and Amelia as much as possible, and was completely emotional.
Lily still sleeps all day – waking only to eat.
One day while Amelia was taking her nap, I staged a photo shoot of Lily. I loved her faces in the pictures, I just wish I had a nicer camera.
What a gorgeous baby!
Thank you for all the kind comments and phone calls and e-mails – I really (truly) appreciated it over the last couple days.
We got Lily’s results today, and her sweat test was negative. This means (according to the genetic counselor with whom we spoke afterward) there is a “99.99999 etc.” chance that our baby doesn’t have cystic fibrosis. Those are odds I can live with. She is carrier for the genetic disease, which means that her kids could have the disease if she marries somebody who is also a carrier.
I am, as you will imagine, enormously relieved (to say the least). I did manage to wait until after we left the sweat lab to burst into relieved tears. Tim and I are undergoing more extensive genetic testing in case we decide to have more children, but we are pretty sure he is a carrier and that I’m not since I was tested for the most common CF mutations when I was pregnant the first time. Lily has the most common (delta F508) mutation.
There was another couple at the hospital with a newborn who was to undergo a sweat test as well. Judging by the huge bags under their eyes and their looks of intense sorrow, we think they were coming to the sweat test lab with two mutations - to confirm that their baby has CF. My heart aches for them, and for any family who has to deal with a devastating illness or disability of any kind. We were lucky, but there are many who aren’t.
We are lucky – we know that. Our luck could change at any second. I’m left with a bit of a scar – I guess it can go along with the stretch marks that formed while I was carrying Lily. Maybe the fibrous scars of pregnancy and childbirth are just there to give us some kind of physical proof of all the emotional hits we take when we decide to procreate.
I enjoyed all of my statistics courses; I understand what statistics mean, and what they don’t mean. I enjoy talking about them, discussing various approaches and interpretations of statistics.
And, normally, I take comfort in statistics. For example, I am terrified of heights, but I love amusement parks and go on every scary roller coaster possible because there is only a 1 in 300,000,000 chance of dying in a roller coaster accident. Those are good odds, really.
But what I discovered almost immediately upon becoming a parent was that the margin of error I am comfortable with decreased by about 50 logs when it comes to my children.
Today I got one of the worst phone calls of my life – it was from our pediatrician. She said one of the newborn screens came back positive for Lily. One of the bad ones – cystic fibrosis. This doesn’t mean that she has cystic fibrosis, necessarily.
Lily’s IRT levels were elevated, which is a risk factor for CF. Because this screen came up positive, they did a DNA test, and found that she has at least one mutation in the CF gene. If they had found two mutations, she would very likely have CF. Usually (here is where statistics play an ugly and terrifying game) babies with elevated IRT levels and one known mutation are healthy carriers of the gene. In this case, Lily would not develop CF, but her children would have a chance of developing CF if she married somebody who was also a carrier.
But … she could have CF. The screens are designed to test for only the most common CF mutations, and there are thousands. The “odds” of her testing positive for CF at this point are approximately 1 in 30. Lower than 5%. These are good odds, says my pediatrician. But 5% is, statistically speaking, an impossibly enormous number if you are a mother waiting to find out if your child’s life could be characterized by pain and suffering and hospitals and loneliness.
Wednesday we will have a sweat test done – to see if there is too much salt in her sweat (apparently one of the first symptoms is salty-tasting sweat). It might be too early to tell, just to warn you. All these medical and scientific advancements, and the diagnosis of one of the world’s most devastating illnesses comes down to salty sweat. Huh.
Lily “probably” doesn’t have cystic fibrosis: http://www.bcwomens.ca/NR/rdonlyres/776E6BBA-747A-4D9C-8447-15603FE49955/42627/CysticFibrosis1mutation3.pdf
This morning when I woke up, I was worried about whether I was going to get the laundry done. The laundry, for the love. How could that possibly have mattered?
When it comes down to it, the statistical prognostic seems meaningless. She either has CF or she doesn’t. It’s 50/50 from where I stand, and where I stand feels like the unstable edge of the highest, pointiest precipice on earth, with a blizzard on the horizon with a 1:30 chance of heading my way.
……………..
After I spoke with the pediatrician and a doctor in the pulmonary center at Children’s Hospital about her sweat test, I fed Lily, and begged her not to test positive. Instead of answering, she fell asleep. I put her down for a nap, but then decided the laundry could wait. I picked her up and lay her on my chest while I watched her sleep, happy that she was blissfully unaware that little tear drops kept falling on her head.
Lily’s first week at home went great. We all fell madly in love with her right away. She is such a sweet little girl.
Lily has been able to turn on to her belly since birth. We were hoping she’d grow out of it (because it’s safer for her to sleep on her back), but she is very opinionated and MUST sleep on her side. Luckily, she doesn’t like to be on her belly, so when she rolls onto it, she cries and I wake up and put her back on her back. And then she immediately rolls onto her side. Naughty baby.
One of the first things we noticed about Lily is that she makes some hilarious faces. She often looks at us as though she’s suspicious of something. I haven’t been able to get many pictures of her faces, but I’ll keep trying.
One of our favorite things about Lily is that she makes funny noises when she sleeps. She NEVER sleeps quietly – always sighing, giggling (or something that sounds like giggling) or making this funny whimpering noise. She smiles a lot in her sleep – it’s so fun to just watch and listen to her sleeping.
I know she’s ready to eat when she starts making suckling noises and trying to suck on her fingers or hands. If I wait to long, she goes from peacefully sleeping to full blown screaming in a matter of seconds. This girl is opinionated!
She usually naps in her carseat or on my bed. At night she sleeps on a bassinet by our bed – I can’t stand not having her right next to me. Oh, we love this little baby girl!
Listen folks, I may only be one day old, and I may not even have a name yet, but I have some serious opinions about life.
What’s hot: Breastfeeding. I could do it all day. Oh, wait – I do it all day. Can’t get enough. I’m pretty awesome at it if I do say so myself.
What’s not: Getting my diaper changed. I hate that so bad. Leave me alone, parentals and nurses – I’m content to sit and marinate in meconium.
Hot: Fuzzy fleece blankets. Swaddle me as tightly as you wish, I love those things.
Not: Scratchy hospital-issue blankets. Come on, other (no doubt inferior) babies have probably peed on those. Sheesh.
Not: That stupid transparent hospital crib you roll me around in. Seriously, you call that a mattress? Sure, a mattress fit for rodents. Just try sticking me in one of those – I’ll have you wishing you were deaf in a matter of seconds.
Hot: Mommy’s chest, Daddy’s chest, or snuggled next to Mommy on her hospital bed. With a fuzzy fleece blanket.
Hot: Having my back or bum patted. Totally relaxes me.
Not: Mommy singing. Just… just… just STOP, Mom. Nice try, though.
Last Friday, I had an ultrasound and was informed that my baby was in the 94th percentile for size. I was glad the baby was healthy, but I was extremely terrified of giving birth to a large baby and had visions of wearing diapers forever more on account of my pelvic floor being destroyed.
I became anxious (to say the least) to give birth as soon as possible. When my doctor refused to assist in my scheming, I knew I’d have to take matters into my own hands and spent some time researching natural labor induction with the help of the world wide webs.
Tuesday I ate pineapple and mango.
Wednesday I went jogging with Squiggles. I knew I wasn’t exactly as nimble as a cheetah, but I felt good going at what I thought was a nice clip, with the wind in my hair. Squiggles kept saying, “Mommy jogging so fast.” Then I passed a group of 5- or 6-year-old boys pointing at me and overheard one of them say, “I think it’s a zombie.” Deflated.
Thursday I asked Tim to take me to Indian Delight. We ordered our favorites, but instead of medium, I ordered them extra hot. The waiter laughed and said, “I don’t think so.” I said, “I’m serious… I need to go into labor,” so he agreed to honor my request.
That night, I barely slept. The spicy food definitely was having some sort of effect, though it was hard to pinpoint what it was (other than indigestion). The baby was in a strange position, and I was agonizingly uncomfortable so I sat in a recliner most of the night and worked on my ASV poster.
Friday I stumbled into work and had minor contractions all day. I told my friend Claire Marie I thought I might be in labor, but we just laughed it off and decided it was a probably a false alarm. I drank a mango smoothie on the way home, just for good measure.
Last evening (still Friday) around 10:00 I got into bed fully expecting to spend another uncomfortable night not sleeping. Tim and I were trying to think of something fun to do with Squiggles the next day. I lay down to try to sleep, and suddenly I felt something kind of pop in my abdomen. But nothing came out.
Me: My water just broke.
Tim (after assessing situation): There isn’t any water near you.
Me: I know, but my water just broke.
Tim: Ummm… there’s no water.
Me: I can’t explain it, but …
And then there was a little water. At which point, I got out of bed and felt a full-blown Hollywood-worthy gush. We hadn’t actually packed a hospital bag, so Tim scrambled around for toiletries and clothes while I had a lovely experience with some diarrhea. I became terrified of giving birth and decided that what really sounded good was a nice, warm, shower, so I got in and leisurely washed my hair. Tim came in the bathroom and said, “Ummm… did you remember that you’re in labor?”
I gave Squiggles a kiss goodbye (I may or may not have been crying and convinced that I would die in childbirth) and we sped off to the hospital. By the time we got there, I was having some fairly severe contractions… back labor… but I tried to have a good attitude. Tim took this photo (titled I don’t want all these nice people to think I’m a total wimp).
I met the labor and delivery nurse (Meesha) and Doctor Bhindya, and they confirmed that I was indeed in labor. They asked me what my plans were as far as pain management, and I said, “I would like me one of those newfangled epidurals.” They laughed and said, “Smart girl.” (I’m pretty sure that if I had said, “I’m going totally natural,” they would have said the same thing and been just as supportive.)
I had to wait for said pain relief while they took care of my penicillin IV (I’m group-B-Strep positive) and some paperwork. In the meantime, my contractions were getting extremely painful and I took this photo of myself (titled Where the hell is that epidural?):
Just when my contractions were becoming unbearable, the blessed anesthesiologist arrived to save the day. I felt a ton of relief almost immediately and told the nurse I intended to sleep through the night and asked her to wake me up when it was time to have a baby.
My epidural definitely worked better on my left side than my right, so at about 5:30 in the morning, I rang the nurse and asked for some more epidural. She asked me to explain my complaint and I told her it just wasn’t working on my right side because I could still feel the contractions in the right side of my back and bum. She correctly guessed that what I was really feeling was the baby’s head pressing on my pelvic floor. When she checked me, I was pretty much fully dilated, but given the large size of the fetus, she wanted me to wait as long as I could to allow the baby’s head to come down as far as possible in order to minimize the pushing I would have to do. She said there would be a lot less tearing that way, but that I could start pushing as soon as I felt ready and it was a matter of how much pressure I could manage.
I tried to go back to sleep, but I could feel a ton of “pressure” (read: pain) in my pelvis with every contraction. Finally I buzzed her and said, “I think I’m ready to push.” We woke up Tim and they helped me do a couple warm-up pushes before the doctor arrived. I started the warm-ups at 6:43. When Doctor Bhindya came back, she assessed the situation and said, “Good job – this baby is pretty much going to slide out.” That was music to my ears because there had been much made of the fact that my baby had a very large head and was large for her gestational age. I was so terrified of ripping my lady parts to shreds.
They helped me push and were so, extremely supportive and encouraging. At 7:01, the doctor said, “Eh, give me one more little push even though you’re not having a contraction.” I did as she said, and WHOOSH – out came the baby! They slapped her on my chest (as I had requested), and I felt an incredible endorphin euphoria – maybe the kind that my natural-childbirth friends experience. Somehow I got the best of both worlds. Best of all was the gorgeous baby screaming in my arms.
Tim and I looked each other in the eye, and I could tell we had experienced the same thing: love at first sight. She was perfect!
I can’t emphasize enough how much I loved my nurse and doctor. They were like midwives – so caring and nurturing and supportive and encouraging, and my childbirth experience was so fantastic because of them.
Tim was also a rock star. He was loving and compassionate and didn’t leave my side for a second, even though he is on a demanding medical sub-internship and has barely slept the past two weeks. As soon as the baby was born, it was clear that he was smitten. He couldn’t stop smiling.
So was I!
So was Nana!
And Squiggles loves her squeaky new toy!
We are so happy and thankful and blessed.
