Prosthetic talk

We went to meet with the local prosthetic guy. He says his company can help us work with pediatric upper extremity experts to get Jordan the best prosthetics that she needs. It will probably take a lot of letters of pleading with the insurance companies, but I think we'll get her what she deserves and needs to help her function in every way imaginable. The down side: Her amputation was right above the elbow... So fitting a prosthetic with a functioning elbow will be very challenging.

In the case of a traumatic amputation, the doctors get to decide where to amputate -- giving the patient the easiest fitting for a prosthetic. Jordan didn't get that option and there's no way I would want to amputate more of her arm just to get the perfect fit. So we're just going to have to work with this extra challenge. In the end, she may not even want a prosthetic and not even care that she's missing an elbow... or a forearm... or a hand.

So our preliminary plan is this: Get a passive prosthetic between three or four months of age. I'd like to aim for a myoelectric prosthetic (that's the kind that is operated with her muscle tone at the tip of her arm) by age one. At some point early on, we're also talking about a more manual shoulder pulley-type prosthetic so she has an arm that can function in more rugged environments -- like in wet conditions or somewhere where there is no electricity. Eventually, there will be needs for arms that help her swim or do other activities... But I'm guessing that kind of stuff will be out-of-pocket expenses. We'll worry about those kind of prosthetics when she's older.

You know, I'm okay with Jordan's arm... I know she is going to live a normal life and she is gorgeous and perfect in every way. But I've noticed I'm hiding her arm in public. I shouldn't. I know I shouldn't. But I'm just not ready for that first comment: "Ohhhh! A baby! She's so sweet! She's hiding her arm... Oh dear! She doesn't have an arm!" And then the stranger gets uncomfortable and I'll have to explain what happened in the womb to another person. I should just get it over with and start getting used to the conversation before we're visiting my parents in Florida and can't hide under a warm winter blanket. But I guess I'm just not ready yet.

One month old!

Jordan is officially a month old today. Pretty cool, eh? I'm also noticing a turn in her behavior. She is so into the world, she is starting to have a hard time letting go of her alert time. So today, I started making sure she lays down if she's been awake for 2 hours. That's upset her a couple of times... But I hope it helps us with our night time sleep. Wish me luck.

I started looking over Cameron's sleep log... And I'm surprised by the similarities between the two. And I didn't start documenting Cam's sleep until he was almost 2 months old.

By the way... Keep praying for "Taco" who is now Cooper. Your prayers are working. He may not need surgery on his heart. But he's not out of the woods yet. Keep those prayers going!!!

Farewell family and hello experimentation

The Reeves and Wilkins left this morning... They are patient folks to deal with our constant feeding schedule yesterday. Today, I'm starting Jordan on my exhaustive sleep training. She's starting to show signs of regulating sleep. So I pulled out my favorite baby book: Healthy Sleep Habits, Happy Child by Marc Weissbluth. I'm going to start making sure she goes down for a nap after her awake time every time. The sleep log is back. I tracked Cam for 6 months. Who knows how we'll make it work for Jordan when she goes to day care. But I'll try not to worry about that just yet.

I'm going to dig back into my book and catch up on the sleep parenting skills I was once so good at. Jordan is resting right now... Hopefully she'll give me 30 minutes or so of peace while Cameron plays with a toy quietly.

I'm a milk machine

The girl ate almost every hour and a half all day. Consider that... If it takes 10 to 30 minutes a feeding, I've had maybe an hour here and an hour there to myself. But that doesn't include burping time and time helping her get gas out of her belly. So I really haven't done much for myself or the rest of the family today. I feel kind of bad about it since we have the Reeves and Wilkins in the house today. Jordan wasn't very social. She was cranky and hungry.

I think she's coming out of the constant feeding haze... She slept through dinner and I even got to give Cam a bath before she wanted to eat. So hopefully we'll have a good night for sleeping. She's certainly eaten a lot today.

Family time again

All kinds of visitors for Jordan today... Her Poppy and Grandma returned for the weekend with Moma Dot and Daddy Junior. I think Cameron is more excited by the visit... But I think all of the grandparents are thrilled to see the girl.

I swear I think Jordan smiled a bunch today. If not, we're so close to real smiles, and I can't wait.

Four Weeks Old!

It was another busy day... And I tried a new sleeping plan of attack. Since Jordan got home, I've been sleeping in her room... And I'm a little tired of that. So last night, I decided Jordan's sleep is regulated enough that I can return to my room. So what did I do? I fell asleep in the rocking chair for 3 hours instead of putting her down to bed. Doh.

Anyway. After a strange night's sleep that eventually ended up in my bed... Randy and I decided to let Cam sleep late so I took him to school. So after feeding the girl, the boy and getting him to school. I had the desire to go grocery shopping. Why? I'm not sure.

So we got home, I fed the girl and we ran off to her well baby check-up. The stats: 9 pounds 4 ounces and 22 inches. Head circumference is 37 1/2. The doctor helped confirm my plans to get Jordan as much physical and occupational therapy as we can. Here's the rediculous stort of the week: I called the state's program that helps disabled kids to see if I could enroll Jordan. They told me she doesn't qualify because she has a birth defect, not a developmental delay like Downs Syndrome. So she said I should call when Jordan has developmental delays. The whole point to starting PT early is to PREVENT developmental delays. So my pediatrician wrote a note to help. We'll see if that works. We waited almost 50 minutes extra to see the doctor... So after the appointment, we ran to campus to show off the girl at the faculty meeting. That was cool.

Since then, I've been feeding Joedan a bunch. She slept through possible Cam playtime, dinner, Cam's bath and bedtime. And we've had a lot of feedings since then. Exciting day. I'm ready for bed.

Say a prayer

If you know who "Taco" is, please say a prayer for him and for a safe birth. If you don't know who "Taco" is... Still, say a prayer for this little boy who isn't born yet. He needs strength for his parents, family and his doctors who will be able to help repair his heart. Prayers are the best support he can get from us right now.

That would have been so nice...

Jordan slept from midnight until 5am. That's five hours. How great is that? It would have been so much better if Cameron hadn't waken up at 3am with an ear ache from his recent swim lesson. So we got him calmed down a little before 4 and Jordan woke up at 5am.... Down by 6am. I was up again by 7:30 to get Cam ready for school.

We were so close to a big chunk of sleep.

The boy has new ear drops so I'm hoping tonight will go better.

So I think I've figured out why we're getting closer to longer sleep for Jordan. I just pumped since the girl fell asleep before I felt she drained me... And I pumped almost 6 ounces. That's awesome. Why? Because that means she's eating more and may need as many constant feedings! Hooray! I'm also thrilled to see such big pumping output so I feel like pumping is worth my time when it comes to stockpiling food for the girl when she goes to daycare. I'm kind of nervous about that part... I never left Cam longer than 4 hours with a day care professional when he was Jordan's age. Randy brought Cam to me once a day for a feeding. I'm hoping to break from work once a day for a feeding... But that isn't the same as her coming to me. Anyway. I fear that day when Jordan's caretakers tell me she didn't have enough milk. I'm determined to not let that happen... And I really don't want to live a Just In Time factory setting. There is so much pressure when you don't have any food stored up. JIT is great fo car manufacturers... JIT isn't so great for breast milk.

Diaper change

Jordan wore a lot of clothes today -- 3 different outfits! Why you ask? Because she grew out of the newborn diapers today. They couldn't keep her from messing up her outfits. I timed t out pretty well... I had 6 newborn diapers left.

I'm starting to see a sleep pattern for Jordan... Midnight to 4am. Then 5am to 8 or 9am. During the day, she's eating almost every 2 hours. The bath last night didn't extend sleep time... So that one night with 5 and 1/2 hours of sleep was an anomaly.

Today I held a class discussion in my house for my leadership independent study. I fed Jordan through most of it. It was fun to talk producing and managing a newsroom.

I had plans to go to the gym... Instead I started cleaning closets. I'm not sure why, but it became an obsession.

Rats... We're not there yet.

So I didn't post about it yesterday because I didn't want to jinx myself... But two nights ago, Jordan slept for five and a half straight hours at night. I felt rested yesterday... Very rested. It was great. So I didn't write about it because I wanted to see if she could do it two nights in a row.

Nope.

I got 4 straight hours. I can't really complain about that. But that's an hour and a half less than the night before.

What was the difference? I think it was the bath she got the night before. So I'm going to do a little experiment tonight... And see if a bath before bed puts her to sleep longer. Wouldn't that be cool if that's all I have to do?

Other than that, Jordan had visits from the Cottles and Liz yesterday. She was very social... Gave each of them a little awake time before falling asleep again.

Speaking of falling asleep again. I'm going to try to sleep again before she wakes up. I just send Cam off to school with his Dad. So I'm going to try to sleep before we run off to the benefits office on campus. I think it's time to start becoming friendly with the folks in that office. They'll be hearing from me a lot for the rest of my career at the university.

Perfect

I've waited three weeks for Jordan to fit in this shirt. She is perfect... arm or no arm.

Three weeks old

It was a long day for a 3 week old baby. Jordan had 2 doctor appointments today. First, I tried to be a good Mommy and feed her right before we left. But she thought sleeping was more important. So I pumped a bottle so she could eat at the hospital even if we were in a situation where opening up my shirt was innapropriate.

First appointment: Ultrasound to make sure there weren't any problems with Jordan's hips. They click a little. But after the ultrasound, we can be confident in knowing there are no structural problems.

Second appointment: Pediatric orthopedic specialist to confirm her hips are okay and prepare for our next visit... After she's fitted with her first prosthetic. She'll have x-rays on her arm to start watching her bone structure. That's the doctor's main focus -- making sure her bone and muscle growth is steady.

So I started focusing on prosthetics for Jordan... And I've found a group that really works with the same beliefs I have: The sooner we get a myoelectric prosthetic, the more natural it will be for her to use. There's a group called Pediatric Prosthetics that thinks babies should get their first passive prosthetic at two or three months and the first myoelectric around 9 months. Thta is much earlier than what our orthopedic doctor told us... And I'm sure that I'll hear differently from the local company... But it does give me more reason to contact them soon.

But all this prosthetic thinking has me scared to learn about the costs. I read somewhere online that the average myoelectric costs $23,000. I hope our insurance plan will help more than the initial documents read. All I can say is... Wish us luck and pray the girl can earn a scholarship into college.

A wrap up of Jordan's third week of life is online now.

A very gross first

It happens in every parent's experience at some point with a newborn... Jordan pooped all over my hand. Yup. It was disgusting. I was changing her diaper when I mistimed it all. She exploded all over my hand, her changing table and the cute outfit she was about to change into. I yelped, grabbed a handful of diaper wipes and tried to clean up, get a new diaper on the girl before she exploded again and keep her little feet out of the puddle of poo.

If my pregnancy wasn't enough birth control... A poo splatter should be.

All is well now. The laundry machine is running, Jordan is hanging out in the bouncy seat and we're listening to yoga music.

Newsroom Day

Jordan was just hanging out with her Daddy... When she got upset and hungry just as I was going to take a sweet picture of Daddy and daughter. It turned into a picture of the cry babies. Very funny.

Anyway... I took Jordan to work today. I set up training for our website and that had me in the newsroom conference room from 9am until 2pm. Jordan slept through the entire first training session... I think she was stimulated too much by students and co-workers who wanted to meet her to fall back asleep immediately before the second session. So I just fed her while I taught... That wasn't too bad. And since the class was four women, I didn't think they'd mind me feeding her.

I love bringing Jordan into the newsroom so many students can finally meet her... But I don't know who knows and who doesn't know about her missing arm. It's not who she is... But I don't want a conversation with an insensitive person who asks me what's wrong with her... And I don't want whispering. I just want it known. She really is so perfect... A little cherub with one arm and one angel wing.

I got her home and fed her a couple of times, but didn't get a nap in before Csm came home. I feel terrible... I fell asleep bwfore dinner... And woke just before Cam's bedtime. I helped tuck him in... But I feel like I missed my Cam time today.

Jordan is now happily fed and sleeping in my arms.

Busy day for a rose

I woke up at 7:40 this morning... And realized we needed to get out of the house in 40 minutes if we wanted to get to church on time. So I got Cam dressed, he played with his grandparents and I got Jordan ready and fed before church. Jordan was cute in her little dress and very snuggly with her grandparents before they left town.

Church had a rose at the altar in honor of Jordan today. That was cool. We had enough time after to church to enjoy breakfast at Bread Co. Then off to home to get Cam to take a nap, feed the girl... And go to a birthday party. I actually took both kids to a party. Jordan slept through most of it... I only had to feed her once. Cameron had a ball and got to eat lots of sugar and play around. I'm exhausted... But I had to stay up late enough to watch the first 2 hours of 24. This may be the best part of maternity leave -- I actually have time to sit down and watch the entire series. I haven't been able to watch since the second season.

Now I'm going to convince the baby to wake up long enough to eat... So we can go back to bed.

Days without naps for Mommy are tough.

Lots of cuddles

Jordan likes cuddles. Today she was crying and I figured she was hungry. So I picked her up... She cuddled in and fell asleep. It was very sweet. I caught a couple of good naps today.

Jordan's Grandma and Poppy got to spend another day with Jordan. But since I'm the one who feeds her, it's so funny to see her fuss on one person's lap and she'll stop crying the moment she gets close to me.

We got a very special gift in the mail today... My Uncle Bob and Aunt Mages sent a special Sri Lankan tradition to Jordan: A small gold anklet with little bells. It's tradition for babies to wear it... It helps mom keep her ears on the baby at all times. It means so much for them to send Jordan a gift with so much meaning.

One other mention... Jordan is shedding. All that thick hair is on its way out. I'm just hoping she avoids the strange newborn bald spots that happen so often. I know, I know... I really shouldn't care. But for some reason, I'm concerned about baby bald spots.

Oh... And I've been keeping up with all of my pictures on Flickr. I even created a second week slideshow for Jordan. To feel free to check it out.

Slow day

We had a great night of sleep followed by a great day of sleep. Jordan reested very well today... I think it's because she was so darn alert yesterday. But even though today was a sleepy day, when Jordan was up, she was checking everything out. It's pretty incredible to watch her grow day to day.

2 Whole Weeks Old

Jordan turned 2 weeks old today. And it's incredible to watch her grow. The outfit she's wearing today was too big last week. It fits perfectly this week. She is so much more aware of the world these days. It's amazing to see her watching and looking and listening to everything around her.

Her alert time is messing with our sleep pattern. I'm not too sure if I remember this challenge with Cameron. She slept a really good amount of time last night -- From 11:30 until 4:30am. She ate for an hour (with a big burp break in the middle). And once I got her second burp out, she was wide awake until 6:30. I was pooped. So I didn't even get to see Cam in the morning, I just let his Poppy take him to school. We slept until 9:30.

So in the last two weeks, I've done a lot of web surfing to learn about ABS and what we need to do next. From what I've read, I can't tell you how lucky we are to have Jordan. Amniotic bands can cause unbelievable damage to a baby. Some of the cases I've seen are just terrible. In the majority of ABS cases, the babies die in the womb before 12 weeks. No one knows why it happens. Statistics show ABS cases happen from every 1 in 1200 to every 1 in 15,000 pregnancies. There are amazing prosthetics out there... and there is an obvious difference between above elbow amputees and below elbow amputees. From the looks of things, I think above elbow may offer Jordan more challenges. But I'm not sure. Only time will tell.

Cameron still tells me he's sad about Jordan's arm. I'm not sure how to help him, except to explain to him that we know Jordan is going to be just fine without her hand. He's a sweetie.

Cranky day

Jordan had a cranky day today. Lord knows if it was something I ate... I was having a heck of a time getting her to burp today. SO all of those missed burps turned into belly bubbles that made her very sad. She was so sad, I never had time to grab a camera and shoot a picture of her sad face. It's pitiful. I'll capture it, I promise.

Randy's dad helped us get Jordan's curtains up in her room. It looks cool... But I think I may take them down and iron them tomorrow. It's sweet, but not totally perfect until I get the wrinkles off.

I'm headed for bed. Jordan was on a strict every three hours schedule all last night. So I think I'm going to head to bed a little earlier than normal tonight.

My wonderful, skinny ankles

I have to share... I got my ankles back completely a few days ago. I was feeding the girl when I looked down at my feet and noticed my skinny ankles. Aren't the great? I've lost more than 20 pounds and I feel reasonably human. I have a lot more work to do to get over this pregnancy... But it is so great to have my friends the ankles back.