Thursday, April 29, 2010

Snot, Formula & Medicine

Ethan has been sick with a cold for the last few days. He got it from me and I was pretty miserable for about a week before I started seeing that he had one too! It is virtually impossible to keep him from getting whatever I get because we're together all day. I washed my hands and used hand sanitizer so much that my hands are really dry.
Yesterday we ended up taken him to the pediatrician after his mid day nap. He woke up with spit up or throw up, I'm not sure which it was, and as soon as I picked him up he spit up more. The best part was that it was orange because his vitamins are orange and he had just had them 2 hours earlier. Gross. I'm learning that as a mother you're first instinct is to protect your child. When he started spitting up I immediately turned him toward my chest so he would throw up all over me...and he did. I changed my clothes 3x yesterday.
The funniest thing about yesterday was that last night after I had fed him and given him some Mylicon for gas and Tylenol for the low grade fever he had, he sneezed. It was a sneeze with whatever was in his mouth coming out. I had him on my knees facing me, so you guessed it, it was all over me. Ken was sitting next to me and cracked up. I have to admit that I laughed as well. But, the best part was that Ethan just stared at us like, "What?" It was a great way to relieve the stress of him being sick.
We try not to worry too much when he gets sick, but it's hard not to worry that any sickness will turn into something bad. Luckily, we have a great team of doctors and they help us every step of the way. We recently received Ethan's wrap vest. We are using it 3x a day for 10 minutes at a time. It helps to get all the gunk out of his chest. It seems to be workin through this sickness since whenever he spits up a lot it has phlegm in it. I guess I'm grateful for the machine and the phlegm, as nasty as it is to have it all over yourself. I'm learning to enjoy the good and bad parts of being a mommy!
Here are some pics of Ethan with his wrap on:

Thursday, April 22, 2010

2 months old

I can't believe that Ethan is now over 2 months old and 9 weeks today! He is changing so much everyday. He talks a lot and loves to have conversations with me, Ken, Grammy (Ken's mom), Nana (my mom) and Papa (my dad). He coos and gurgles and smiles a lot. We haven't been too successful at getting a really good picture of Ethan smiling. He really likes the red light on the camera, so he gets distracted easily. I'm not sure if I mentioned it in the last post but Ethan loves fans and clocks. He will look right past someone's face to smile at the fan. He was very excited to see that he had his own fan when we moved him into his room at 5 weeks. It's been so much better having him sleep across the hall so we don't hear every single noise he makes. I have been amazed that I can hear when he wakes up before Ken. Ken says I have ears like a hawk, or something like that. I guess it's a mommy thing.
He just gets cuter everyday. I love spending my days with him. Although, I am relieved when Ken comes home and takes him. I'm off on disability through the middle of July at the earliest. He will be 5 months old by then so I feel like if my doctor says I'm ready to go back to work he at least should be consistently sleeping through the night. We lucked out twice last week when he slept two nights for 6-7 hrs. One night I had to give him back his binkie twice, but he didn't get out to eat, and the next night he slept from 10PM-5AM. I kept waking up thinking he would wake to eat.
Ethan with Ken on Sunday waiting for the Giants game! Notice the "Beat LA" sign in the background.

Maybe one of these days we'll get more pictures of me with Ethan. It's the curse of being a mom.

Tuesday, April 13, 2010

Mother's Poem

Okay, so I stole this poem from my friend, Kerri's blog, but it's great!

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want it to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants. Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law. You're a wonder.

Thursday, April 8, 2010

Life As A New Mom

I love being a mom! Today Ethan is 7 weeks old. We just went to the Pulmonologist's office yesterday for a clinic and Ethan weighed in at 11 lbs! I can't believe he's gained 2 1/2 lbs since birth. He's also 22 inches long! My little boy is growing so fast. Yesterday we met with the pulmonologist, the dietician, and the social worker. I was pleased to hear that he has completely recovered from the Brochialitis! The dietician told us that as he gets older he will be able to eat normal food. We will need to make sure he eats a well-balanced diet and that what he eats is high in nutrients. We will have to keep him away from juice, soda, tea and eventually coffee. We were told that Cystic Fibrosis kids tend to not eat a ton so what they do eat needs to be high in nutrients and that's why they want him to stay away from drinking anything other than water and milk. Kids who drink a lot of juice, soda, etc. tend to not gain the weight they need to and CF kids tend to not gain a ton of weight anyways. We are very happy that he is growing very well and that proportionately he's in the 68th percentile with the goal being to keep him over 50%.

Ethan and I are beginning to ease into a routine. He's such an easygoing little guy. I think his personality is a lot like Ken's. He is calm, social, talkative, and laughs a lot! A few days ago I laid him down on his playmat and he talked and laughed at a picture of a rabbit for 10 minutes. It's so fun to watch him learn new things and to take everything in. He loves to have conversations with us too! We'll ask him something and he'll coo back and laugh. It's really funny! I'll have to get a video and post it in the next week or so.

I really wish that we could afford for me to stay home with him full-time, but it will probably be unlikely. For now, I'm on maternity leave for who knows how long. I have an appointment with the postpastum therapist on Monday to extend my disability as long as possible. I'm hoping that in the end I can get an extension of 8-12 weeks and then I'll have Paid Family Leave on top of that. If all goes well I'll be off through the end of the summer PAID! I joke about wanting to get as much time out of the state money, but really I medically need it. I have postpartum depression, which is even more common in people who have Bipolar disorder. I've been managing with Zoloft and trying to take it easy. I've learned a lot of coping strategies through the years and especially over the course of the last year and a half being off meds. I will be going back on my medication soon since I've stopped breastfeeding altogether. That's a whole other post :) It usually takes a few months for meds to start to take full effect and we have to start all over now that my body has changed through pregnancy. I'm hoping it can be done fairly quickly, but also that I can have more time paid with my baby. For now, we're doing pretty good and we'll have to wait and see what comes next.

I'll post more pictures later in the week. He's growing so fast!