Thursday, July 30, 2009

Can you buy diuretics in bulk?

The day started out with a trip to my OBGYN for a follow-up appointment. I've been there 3 times now since Alexis was born and this was the first time that I could take Alexis with me since she came home from the hospital. Dr. B. and the nurses thought she was adorable and I was so glad they could finally meet her. My blood pressure was fine (thanks to the bp pills) but my ankles are still huge. They've always felt stiff and uncomfortable, but before they only hurt when someone touched them--they felt bruised. Now they've become painful to the point where they even sting sometimes. I've decided to stop nursing, not only so that I can take a diuretic and hopefully get my feet back to normal, but also because Alexis really doesn't get much of anything when she nurses. She latches on and instantly falls asleep. She doesn't really do anything because I think she knows it's easier to eat from the bottle. So since she'll get more calories from the formula anyway, I decided my nursing days are done.

Lexi saw the cardiologist today and I did ask his opinion on stopping nursing. He thought it was fine to stop nursing and just have formula. Alexis weighed in at 9 lbs, 1 and 1/2 oz. Dr. K thought her breathing was a little fast, but nothing he was terribly concerned with. He did an echo and the hole in her heart is still large and requiring surgery. Since she's doing so well, she doesn't need the surgery quite so quick. We have another cardiologist appointment for September 3 (Blake's first day of preschool) and at that time he might schedule the heart surgery. He increased her dosage of the 2 diuretics--I literally just changed 4 diapers in about 20 minutes.

Tuesday, July 28, 2009

To work or not to work...

I stopped in at work today to have my computer fixed (bit of a panic attack when the computer went black and I knew all of Lexi's pictures were on there. Thank goodness it was easily fixable!) I had Alexis with me and got to show her off to all the girls. Everyone oooooood and ahhhhhhd (is there a spell check for that?) appropriately and she slept through almost the whole thing. I talked to my supervisor about returning to work which I still hope to do. It's the ideal job for a stay-at-home mom: flexible hours, a bit of extra spending money, and a way to get out of the house a day a week and feel like a real adult. I don't know when I would return but it definitely won't be until after Lexi has her heart surgery, is out of the hospital, and totally recuperated. There may be some changes in the job description which I have to consider before going back, and at this point in time, I still can't stand the thought of leaving Alexis for more than a few minutes. That will probably change after she's all healed from her heart surgery. Every mom needs a break from time to time. So going back to work isn't 100% definite, but still likely to happen.

Gotta go back up my computer and put all my pictures on a flash drive.

Monday, July 27, 2009

Nicholas and I went to his new school this morning for Kindergarten testing. It took a whole 5 minutes and after he was done, Mrs. Miller came out to tell me that Nicholas had no problems with either test and she seemed impressed by what he had learned in preschool. Proud Mommy! We still don't know what class he'll be in or if he'll be in mornings or afternoons (no full day Kindergarten at our school). I requested mornings and have Blake signed up for morning preschool. I'd like for them to be on the same schedule so we have more flexibility with Alexis's schedule as she'll start receiving PT and OT pretty soon. Now that the boys don't nap as often, I wouldn't mind afternoons, but then it just seems like it breaks up the day so much that you can't get much else done. We ought to know his schedule by next week.

Thursday Alexis reports back to the cardiologist and I'm hoping they'll go ahead and schedule her surgery (okay, so I'm really hoping they'll say that she doesn't need the surgery, but not letting myself even go there). I HATE having everything up in the air. I like to plan. I like to keep my calendars updated, arrange for childcare with the family, like to KNOW WHAT'S GOING ON!

Mom and the kids and I will head to Elkhart on Thursday after seeing the cardiologist and will return home to Noblesville on Monday. Tuesday of next week, Alexis sees the pediatric surgeon (follow up from her duodenal atresia surgery) and we have the big meeting with First Steps to plan what services Alexis will get and how often. With all these appointments and meetings, I'm not sure how we'll fit in school. Nicholas has Kindergarten orientation on Tuesday, August 11 and his first day of school is the 12th. Blake starts Preschool at the beginning of September.

Note to self: next year get the industrial sized, big grid calendar.

Friday, July 24, 2009

A super kid, a super doc, a super mom, and some gratitude

Well, after all the positive feedback of my most recent post about my unfortunate yet memorable spray tan experience, I'm glad to know that my humiliating experiences bring such joy to your lives! And no, I am not posting the spray tan picture.

Yesterday was my first time daring to take all three kids out in public by myself. We hit Wendy's, Target, and Barnes and Noble and, as I posted on facebook, no one threw a fit, peed their pants, or got hit by a car. So all in all, a good day. Not that I plan on doing it again soon.

Today was Alexis's first appointment at the Down Syndrome Clinic at St. Vincent Hospital. I had heard wonderful things about Dr. Escobar. All true. The man is a rock star. He started off explaining that they don't view Downs as a disease or a problem, but the genetic makeup of a person. He also explained that while we usually measure a person's success in life by how smart they are or how they look, we should measure success by a person's happiness. That is what they want to do: make sure Alexis grows up happy. *sniff sniff*

I'm sure he says this to everyone who walks into that clinic, but he was so kind, and seemed so genuine, you couldn't help but love the man. He thought Lexi looked great. He put her on Prevacid because he sensed she had some discomfort in her stomach. And he gave me his e-mail address to contact him any time I would like. God bless that man.

Alexis weighed in today at 8 lbs, 12 oz. At 3 1/2 months old, she now weighs what Blake did when he was born. Height and weight are plotted differently for children with Downs, but I was still surprised, and very pleased, to learn that she's in the 25th percentile for weight! Dr. E. thought this was perfect. One of her biggest struggles will probably be low muscle tone and it's best for a child to stay "lean" as it can help her in areas such as hopefully avoiding sleep apnea. Alexis has her next appointment at the clinic in 3 months.

I was talking to my sis-in-law, Conya the supermom. We'll be in Kokomo tomorrow for my nephew's birthday party and she's having my 2 boys spend the night. The girl already has 3 kids of her own, but wants my 2 boys to spend the night. Again. Either she's a super nut or a super mom. We'll go with super mom. Anyhoo, she told me of a lady at her kids bible school that asked about Alexis--someone who doesn't even know us. I told her that I hear that a lot: people we don't know that have asked about Alexis, sent her gifts, prayed for her. This child's prayer chain must be many miles long. People tell other people about her, people pass along my blog to others. It's amazing to me. I wish there was a way to get a list of all the people that have said prayers for this child, but I just don't think it's possible. I think it would be so sweet if there was a way to someday, when she's older, say, "here is a list of the hundreds (I'm sure there are hundreds--I can't tell you how many people have put her on prayer chains at their churches) of people who have prayed for you."

So whether I've told you this before or not, whether I've met you before or not, thank you. Thank you for your prayers for Alexis and our family, for taking the time to read about her and tell her story to others, for your warm thoughts and kind words. We are grateful.

Thursday, July 23, 2009

Warning: longggg post. Making up for the last week, and straying from the topic of Alexis...

I need to be better about keeping this blog updated. It's kind of nice not having as much "Lexi drama" to keep you posted on, but seeing as how this has been my main mode of journaling, memory keeping, and scrapbooking reference, I need to get on the stick! I might have to retitle the blog seeing as how there isn't as much to report on Alexis and some of the topics I write about now will cover other events. I also feel bad about leaving Nicholas and Blake out of the blog title.

Our first family vacation to Mackinaw City was great, even if it was a bit short. Jason came up to Elkhart to meet us and we traveled on from there. The trip was about 5.5 hours and I couldn't believe that we could make the trip with only 1 stop. It helps when I can sit in the back seat with Alexis and help her get to sleep and stay asleep using a pacifier. She slept the whole way with the exception of a 1 hour pit stop. Incredible! As a kid, when my family would make twice monthly trips from Elkhart to Indy to visit my grandparents, we'd stop once an hour!

We hadn't told the boys that my folks were meeting us in Mackinaw City. It was a sort of last minute idea. Dad had never been there and Mom hadn't been since she was a kid. We had to drive separately due to Dad's teaching schedule. It was a nice surprise when we got to our hotel room, openned the door to the adjoining room and there sat Jo Jo and Pop Pop!

Friday was a bit gloomy, but we risked it and took the ferry over to Mackinac Island. Last summer when we went to Mackinac for the first time, we rented bikes and took the 8-mile ride around the island. The boys had wanted to take a carriage ride last year, but by the time we got off the bikes, it was too late. This year we went on the carriage tour. It was an easy activity to do with a 3-month old. It sprinkled on and off, but luckily it only seemed to do so when we were indoors or under the awning of the carriage. Lexi slept through most of the ride and even Blake fit in short snooze on Jason. We did a bit of window shopping, had some ice cream, and headed back to Mackinaw City.
Because of the gloomy weather, we never spent any time on the beach which was very unfortunate seeing as how the hotel was directly on the beach and the boys had so much fun playing with their sand toys last year. But luckily the hotel had a very nice indoor pool and hot tub. Jason took the boys to the pool every day and they loved it. Nicholas learned to doggy paddle and is quite proud of the fact that he doesn't need to wear his water wings. (I, of course, am a bit paranoid that he doesn't wear them any more, but if I had my way, he'd wear a floatation device until he was on Medicare.)

Saturday night was the wedding of my dear friend Christy. It was an outdoor, evening wedding. COLD! The temperature was in the 50's with 20 mph winds. The skirt and flip flops that I wore were not ideal. We were all thankful though that it wasn't raining. Christy, Eric, and the wedding party stood out on the dock and I was worried about a Funniest Home Video moment: a dress flying up, a person falling in the water, the rings getting dropped into the lake...but thank goodness, other than the fact that we couldn't hear anything due to the wind, the ceremony was beautiful.

We returned to Christy's cabin the following day for a cookout while my folks headed back to Elkhart. The weather was cool, but sunny and everyone had a good time. There were many kids, which is always a relief to a parent. No parent wants to have the only kids in a large, full room of adults, no matter how well behaved your kids are. On Monday we drove home to Noblesville. Another long trip (7.5 hours) and again we only had to make one pit stop. My kids are amazing!! And what did our parents do without car DVD players?

I haven't done this in a while, but here's the gripe du jour:

Spray tans. My dear friend Jeanne was raving to me about them one day. When I think of spray tans, I think of the Friends episode when Ross gets a spray tan, asked to be tanned to the darkness of a "2", forgets to turn around, and gets double the tan on one side and no tan on the other. By the end of the episode he's an "8" and only on his front. But Jeanne swore by it and seeing as how I spent most of the summer in the NICU and the weather hasn't been ideal for tanning, I wanted a tan before heading to Mackinaw. I had looked up Mystic Tan on-line and watched the instructional video: you stand in front of a machine that sprays you head to toe with a fine mist, turn around to get your back, towel off and go home. Easy. I knew my sister-in-law had done it in Elkhart so she offered to make me an appointment while I was in town before going to Mackinaw.

I walked into the tanning salon and they took me to the room to get the spray tan. Ummmm, no machine. A person sprays you with the air brush tanning gun thingy. What?!?!?! How humiliating! So I'm feeling quite....errrr...uncomfortable in the paper disposable bikini. She asked how dark I wanted to go. I told her I didn't want to be terribly dark, but I wanted to look like I had a good tan. She sprayed me, and sprayed, and sprayed. Back, front, face... She told me that the tan would get darker throughout the day, not to shower until the next morning and not be startled if I woke up in the morning looking splotchy and green. Green??? She had me look in the mirror when she was done. WHAT?!?!?! Are you kidding me??? I looked darker--literally--than anyone on Dancing with the Stars! Not one to complain, I kind of laughed it off, convinced myself that I had been this tan before when I was in the Carribean, and cringed quietly when I saw the areas of white skin causing the most horrific tan lines I've ever seen.

As the day wore on, I did in fact get darker. Mom, bless her heart, tried to convince me that it looked nice. Dad couldn't cover up the gasp that erupted when he saw me. Sister-in-law laughed. The boys, surprisingly, didn't say a word. I took my picture on my cell phone and sent it to Jeanne with the message, "I'm an 8!" Just like Ross. Jeanne insisted I looked more like a 7. Thanks Jeanne! I would have showered immediately but was afraid I would end up with tan streaks. I couldn't bring myself to wait until the next morning to shower, so after about 5 hours I hopped in. Someone should have warned me that all this dye would just wash off leaving me with a nice golden tan. Soooo much better. Thank goodness. Next time--if there ever is a next time--I will clarify that I will be tanned by a machine and will request a "3".

Okay, as for a Lexi report. (Finally, right? Isn't she the whole reason you're reading this blog?) She is officially on the waiting list for services through the Developmental Disability Waiver. This is a program that can provide services like therapies, and the waiting list is currently about 10 years long. She has been approved for First Steps and we'll have a meeting in 2 weeks to discuss exactly which services she will receive (PT and OT) and how often. Tomorrow we have our first appointment at the Down Syndrome Clinic at St. Vincent Hospital. My understanding is that we'll be there for several hours while Lexi has several evaluations, tests, blood work, etc. I'll keep you posted and maybe by next time, this blog will have a new title. I'm thinking: A Pickle, A Beezle, and a little Something Extra.

Tuesday, July 14, 2009

Yesterday was our first home visit from First Steps. One PT and one OT came to our house to ask questions and evaluate Alexis. They were impressed at her strength and abilities. If she didn't have the diagnosis of Downs, she probably wouldn't qualify for services at this time, but because of the diagnosis and the likelihood of low muscle tone, the still may qualify. The decision isn't up to the OT and PT, but to the team, and a meeting will be arranged in the next few weeks to decide if Alexis will qualify for services.

Alexis had an appointment with her pediatrician yesterday afternoon. She finally hit 8 lbs-- 8 lbs exactly. Dr. M was so impressed by her progress, that she doesn't have to go back to the pediatrician for a month. They did another blood draw and her labs were good, including her biliruben which is almost within the normal range.

After the doctor's appointment, Mom, Nicholas, Blake, Alexis and I headed to Elkhart. Dad stayed with the boys today while Mom and Alexis and I made a quick road trip to Battle Creek, MI to see my grandma who had not yet met Alexis.

Thursday morning, Jason will come to Elkhart and we will drive up to Mackinac for a wedding and our first family vacation. I don't look forward to the road trip, but can't wait to be in Mackinac. We'll go to the island one day, attend a wedding on Saturday, and spend some time on the beach. We'll head home on Monday.

Thursday, July 9, 2009


Oh how I miss seeing my ankles...those lovely ankle bones that used to protrude just enough. Now I have permanent indentations from the only pair of flip flops that I can get on. My flower ankle tattoo has stretched out from the swelling in such a way that it looks like it's gotten a dose of Miracle Grow. I had talked to my OBGYN about the fat ankles soon after delivering Alexis and was put on a blood pressure medication for a short while. It didn't help with the swelling at all. I finally broke down and went to my regular doctor to see if there was anything she could do. Nada. She did feel that the swelling wasn't a sign of any bigger problems since my heart, lungs, and labs were all fine. She said that she would put me on a diuretic except that it's not a good idea to do it while I'm nursing because in addition to "drying up" the fluid in my ankles, it could also dry up my milk supply. My blood pressure was a bit high, so she did put me back on a high blood pressure med. When I'm done nursing I can call back and start on a diuretic then. So I'm stuck with cankles for a while I guess.

I'm a bit disgusted with my doctor after today's visit--not because she couldn't fix the fat ankles, but she didn't ooh or ahh over Alexis even once. That is simply unacceptable. Time to get a new doctor.

Wednesday, July 8, 2009

July 4th weekend

Blake holds his sister for the first time.

Uncle Brent and Alexis

Blake insists his name is Captain Hook. He made the sword himself. The tinkertoy container is supposed to be his peg leg.

Pop Pop's signature position. I think we have a picture of him napping with each of his 5 grandkids in this exact same position..


Mommy and Lexi

Uncle Brent and the cousins: Nicholas, Blake, Layla, and Marley

Jason and Marley

Layla and Alexis

Thursday, July 2, 2009


I am very happy to report that Mom is cancer-free! The tumor in her bladder was in fact cancerous, but they caught it early, consider it low-grade, and superficial since it hadn't penetrated the wall of the bladder. She needs no further treatments but will be monitored every 3 months as these tumors often grow back.

Wednesday, July 1, 2009

Lexi put on 7 oz in a week. I put on 7 oz in the last 4 minutes.

I get a bit anxious now every time I take Alexis to the doctor to be weighed. I worry that she'll have some significant weight loss and they doctor will want me to take Alexis to the hospital to find out what's wrong or to put in a tube feeding or something. Today I took Alexis to the doctor (along with my trusty sidekick, Aunt Paula). While we were waiting in the waiting room, I had Paula feed her a bottle (add 3 ounces to her weight) and instructed Alexis to not pee or poop until after she was weighed. Alexis didn't listen (stubborn gal) and had a very wet diaper. But imagine my relief when she weighed in at 7 lbs, 9 oz! That's 7 ounces in 7 days! The doctor says she looks great. I asked what kind of milestones the average 3 month old should be hitting. It's hard for me to remember from when the boys were this age and I was thinking she should have more head control. But Dr. M said she looks for tracking with her eyes (she does this) and smiling (does this too). Alexis sleeps great. On the average she probably sleeps 6 hours straight at night. There have been a couple times when I've woken up to realize she'd been asleep 8 hours and I had to wake her to give her a bottle. This kid is unreal! I wonder if spending that much time in the NICU almost forced her to learn to put herself back to sleep or something. I'm so grateful. 3 kids and they all sleep all night. So why am I up at 1:23 a.m.? Night owl. We go back in 2 weeks. Wow. 2 weeks with no doctors.

Mom still hasn't heard anything from the doctor regarding the status of the tumor and to confirm if she has/had bladder cancer or not. Poor girl. I'm sure she's going nuts with the waiting. I would think it would feel as though your life is just at a stand still while you wait on this kind of news. I hope she can get good news and get on with her life. She has grandbabies to come care for!