Sleep

Hmmm... so, sleep is now a precious commodity.

When people ask me what it is like to be married, I often tell them you really can't understand until you are married. Well, I'm adding having a child (especially once they come home) to that list of things you have to experience to understand.

Having Emma home has been great. She is getting used to her new surroundings, and we love having her home. It has been an adjustment having to take care of Emma all the time (about every three hours at night right now). However, it has been harder on Liz the last couple days than me...

Why is that? Well, I get migrane headaches. Always have. Definitely no fun. Actually, before Emma, the only time either Liz or I had been to the hospital together because of one of us was the two times she took me to the hospital for migranes. So, I got a bad one. With a 102+ fever on Sunday... which took me until Tuesday until I was comfortable being around Emma again. Which meant that Liz was taking care of Emma 24 hours a day for a couple days. Not a big deal when you have a baby that eats on their own and doesn't have cords attached to their body. A much bigger deal with cords and when the whole feeding process often takes an hour (not to mention all the medications and the fact that Emma is always making noises that we have not yet been able to differentiate too well).

So, Liz has been working hard lately, but I'm starting to help again.

Back to Emma... she has been doing well. She had a high potassium level (which i might have mentioned before) which turned up fine. She is gaining weight well (over 8pounds 6 ounces). She has an eye appointment this Thursday, a pediatric appointment on Friday, and a pulmonary (lungs) appointment on Monday the 30th. She has gotten better about sleeping now, which is great... however, still not quite where we would like it to be (if anyone has advice on how to get a baby to go to sleep at 9pm until 8am that would be greatly appreciated).

As said before, Emma likes to sleep where mom and dad sleep. While she likes our bed, she really likes the futon, as you can see in the pictures. (Note... when she is on the futon or the bed, we are always right by her side... we are not irresponsible parents who photograph our misdeeds).

Emma several days ago...

It's amazing... everything you see sitting out in our apartment is baby stuff. Again... people told me baby stuff takes up a lot of space, but this is ridiculous (and we don't have much stuff).

I also took some pictures of Emma w/ Piglet... Enjoy!

Emma and Piglet...

Hmmm... maybe Emma doesn't like being compared to a pig...

Emma in her chair w/ piglet...

Well, because Emma is getting so big (or piglet is getting so small, as mr. kruse has suggested), we have a new "measuring stick" or animal, if you will. meet pooh.

ok... i know... most of the pictures of emma are when she is not happy... i couldn't tell you why, it just worked out that way.

Emma also loves having stuffed animals with her on walks... she particularly likes her stuffed dog, which the stuffed dog company named "pudding".




As for the housing front, I believe we've negotiated everything, and now we just have to finalize our financing and get to the closing date.

As for school... I just have the one final in First Amendment law on May 12th. Wish me luck!

On a side note... Liz and I took pictures of the nurses that were on Emma's care team for the entire time she was there...

Emma and Aunt Sherryl (Weekday Evenings)

Emma and Aunt Julie (Weekday days)... truly, Emma does love Julie... we just caught her at a bad moment...

Emma and Aunt Deb (Weekend Days)

Emma and Aunt Michelle (Weekend Nights)

Unfortunately, I didn't get a picture of Emma with her Aunt Cheryl (weekday nights) because, well, Liz and I didn't try and make a habit of being at the hospital from 11pm to 7am.

Doctor?

Another big day in the Sullivan household. Also a new milestone... I was able to get Emma to go to sleep for the night by 2:20am! The little victories are all I have anymore.

Today we went to see Emma's doctor for the first time. While Liz and I had never met Emma's doctor, he had met Emma several times in the hospital. The appointment overall was pretty quick. We really like the doctor, and we have another appointment this Thursday! Got to love having a premature baby!

As for the results, Emma has continued to gain weight (which is a good thing)... She is now 8 pounds or so... while it doesn't sound like much of a change since Friday, if I've learned one thing, its that even if the scales are all calibrated, they often come up with different results when an ounce or two is all that is at issue.

Overall, Emma's appointment was good. Emma has to do more "tummy time" to strengthen her neck, but nothing else for now. As I said earlier, we have another appointment this Thursday, so we'll see if anything changes once we've seen the doctor a couple times.

Emma also has a appointment with pulmonary next Monday. Pulmonary is concerned with Emma's lungs and breathing, so we are looking forward to what they have to say. So far, Emma has proven that she doesn't need her oxygen too much, as is evidenced by the below pictures. Luckily she is almost always on a monitor, so nothing to worry about.

Hmm... can't some people breathe through their eyes? Maybe that's why Emma moved her nasal canula up there.

Again, Emma attempting to breathe through her eyes.

This rabbit is my favorite stuffed animal of Emma's to get her to try and crawl or move her eyes / head. She's gotten pretty good at tracking it, even if the rabbit jumps over her head and Emma has to move around.

Other than that, nothing much else going on around here... enjoy the pictures / movie of Emma in her home!

There is a lot I don't know about babies, but an enclosed security device?

Homecoming

Well, Emma is home. It's been a good couple of day so far... I'm not sure who has more to get used to, Liz and I or Emma.

Emma has been a handful at times since she got home. On Friday, we left the hospital ~ 4pm... The nurses were all sad to see her go, but were all very excited for her to go home with us. Usually, Emma stays awake for a couple hours here and there... occasionally, a bit longer. Friday was one of those days.

As I stated before, I took the Patent Bar on Friday morning. I decided that I'd do our taxes that night, so I told Liz I would do the 2am feeding and she could do the 5 am. So, Liz went to bed ~ midnight... I thought Emma would go to bed soon (that's right, she was was still up at midnight). So, I thought to myself "i've put Emma to bed and she's gone to sleep pretty quickly before." how hard can it be? well, I'd hold Emma, she'd calm down and she would look like she wanted to go to sleep, so i'd lay her down... and she'd cry. so i'd pick her up. she'd calm down. i'd put her down. she'd cry. repeat. repeat. repeat. repeat. so, at 4:30am, I finally woke Liz up and told her it was her turn. Emma went to sleep right away... hmm....

Other than that, Emma is starting to get a little bit better schedule. but, she is still up late (~ 3am last night). but, she is starting to get more used to her surroundings. on friday, she was curious about everything, and was scared of lots of things. now, not so much. she's getting used to the mammoth 600 square foot apartment we call home.

Emma and her bunny...

Chad and Emma.

Emma in deep thought...

Still thinking...

Last family portrait in the hospital...

Emma in her new crib!

The stuffed dog is next to Emma's head is there because Emma likes to turn her head to the right... so, we are trying to encourage her to keep her head up or turn to the left...

Emma on her play mat... Doesn't it look like fun?

Mom feeding the baby...

Emma in her bouncy chair...

Talk to you soon!

Busy Day

So, the last couple days have been busy. Especially today.

For those of you who don't know, I am going to be practicing Intellectual Property Law starting this fall in Chicago for the firm Fitch, Even, Tabin & Flannery. I'm very excited about the firm.

One of the requirements of my employment is passing several exams... Last fall, just before Liz went on bedrest, I passed the Multistate Professional Responsibility Exam (MPRE). Today I took the second of my three required tests - the Patent Bar.

First, let me tell you that the Patent Bar covers a wide variety of information. In print, the amount of material is ~ 12 point font, 8.5x11 paper, approximately 4-5 inches thick... a lot of stuff, and it isn't all the most exciting information in the world.

So, this morning I took the Patent bar. Six hours of fun in a room with lots of computers, lots of people taking different exams, where you can bring nothing in except the clothes on your back. Sensory deprivation (especially when you put the ear phones on).

Luckily, the suffering over the past couple months is over... and appears to be over. The computer said I preliminarily passed. Yahoo!

oh, and on another note, Emma came home today.

Update

Well, Emma came out of her procedure just fine. A bit sleepy, but she was her bubbly self within a couple hours.

What did we learn? First, Emma does not need surgery. However, she will get worse before she gets better.

Emma had a multi part diagnosis...

First thing... Emma has some flappy skin in her esophogus, and while it is the appropriate size all the way down, it is a bit soft in places and is a more oval shape (rather than circular). Emma will grow out of this, but, as I said earlier, it'll get worse before it gets better. The doctors told us that this condition has ~ 18 month healing time... with Emma getting worse and worse for the first six months, and then gradually getting better by the 18th month (24th as a worst case scenario).

Second... Emma's left vocal chord is paralyzed at this time. How did this happen? During Emma's PDA surgery in December. We knew that it was a possibilty that it could happen, and the doctors actually use the nerve for the left vocal chord as their road map for the PDA surgery. Unfortunately, her left vocal chord is paralyzed. The next question is... will it heal (healing time = 6 to 12 months) or will it not heal. If it doesn't heal, Emma is not in trouble. Luckily, babies brains are smart and can adapt... so, Emma's right vocal chord will compensate, and no one will be the wiser. We asked the pediatric ENT what if it neither heals nor compensates... she said that she has never had that happen...

So, where does that leave us? With a baby that is getting closer to breathing on her own, that isn't eating much lately (our guess = the docs are over feeding her), and with a mom and dad that are ready to get her home. But, we know that her grunting and breathing will get better over time.

On a side note... Michelle, I hope you are enjoying your time in Hawaii! I'm guessing we'll be seeing you on Saturday...

Prayers

Well, Emma is having a big day tomorrow. Tomorrow afternoon (~1:30pm CST) she is going to have a bronchoscopy (spelling anyone). Why do you ask? Last week, when looking at Emma's vocal chords, the doctors thought that she might have something going on with her throat requiring a closer look.

So, what does this entail? First, Emma gets to eat at 5am (per normal schedule), and then she is on IV fluids w/ sugar until after the procedure (which they conveniently call a surgery... Liz and I learned tonight that anything except a consultation is classified as a surgery for billing purposes... however, it makes it sound worse that it probably is). And, she is going to be given a general anesthesia, a breathing tube placed in her mouth / throat, and a camera thingy also put down her throat. The doctors will look around (videotaping the entire exploration) and will then analyze the findings at a later time.

So, we need everyone to keep Emma in their thoughts and prayers tomorrow. Going under general anesthesia poses risks for everyone, but especially for a baby with chronic lung disease (among other issues). We just ask that everyone pray for Emma to come through this well.

Thank you very much for your thoughts and prayers (in advance).

Chad

Asbestos Filled Easter Bunnies

Happy Easter!

Hmm... It's been a while. I'd like to say that I've been too busy, but it doesn't take that long to post. I guess it is a more of a question of motivation...

First, Emma continues to do well. She is up to ~ 7 pounds 7 ounces, and is growing like a weed. She is still on 1/8 of a liter of oxygen (although we are confident that she can go w/out it). She is being force fed 55ml (24 kcal / oz) milk every three hours. And by force fed, we mean force fed.
We were told last weekend by the doctor on call that Emma would be home this past week, and then two things happened. First, they checked Emma's vocal cords... which looked good, but she has some flappy skin in her throat which causes her to make sounds when she breathes. It's not that uncommon, and often babies grow out of it. Unfortunately, the UW / Meriter hospitals decided to let all the pediatric ENTs go on vacation this week. Good planning guys. We're hoping she can get seen on Monday.

The other reason she didn't come home is that a new doctor came on for a week. This is a common occurrence... there are 5 doctors (and a fellow) that work in the NICU. They all have different ideas on how to care for premies, which can result in the doctors looking at things in different perspectives. or, as is today, one doctor can have a seriously different idea of how to care for a premie. The current doctor feels that Emma needs to be gaining 1 pound a week (yes, i know i said one pound a week). At this time, this doctor is only on for a couple more days, and then a different doctor will be on. Hopefully that means we can go home soon.... but, who know.

Emma has been progressing well. She continues to engage people more, will entertain herself while in her chair or crib, and will stay up for hours at a time. Emma's favorite time to be up is from 8pm - 11:30pm... the nurses say we trained her this way because we always come in for 8pm cares. Her muscle tone continues to improve, as her ability to hold up her head, prop herself on her forearms, and her ability to put up a little resistance with her legs when we stand her up.

Overall, Emma is doing well... we're just getting anxious to get her home.














Next... The house! It is a beautiful house in a great neighborhood. It is a three bedroom, two bath house with a full basement. The main floor has two bedrooms, living room, dining room, kitchen, bathroom and sun room. The floor are all hardwood with original hard wood trim. The upstairs is the master bed & bath with storage. The basement is half quasi finished, and the other half unfinished. There is a decent sized "oak park backyard" (aka, it's small), with the leaning garage of pisa. Here are some pics, and i'm sure i'll blog more about it in the future.

The outside...

The living room... a bit small, but cozy...

wood burning fireplace thing in the living room...

The leaded glass windows!

Dining Room

Dining room redux

kitchen...

Kitchen, again

Floors!

Bedroom #1...

Bedroom #1 again... i like the built in drawers and closet...

Bedroom #2... Emma's Room!

Emma's room again!

Quasi finished part of the basement...

Unfinished part of the basement.... this is where the mold is!

Master bedroom.... it's messy because the inspector was taking everything out of the closets / storage areas...

master bedroom...

other side of the master bedroom...

The leaning garage...

Hope everyone enjoyed the extra large easter edition!