Monday, December 28, 2009

Theory of seven. (It's stupid.)


Happy Birthday to Jason! 37 years old today. Thir-ty se-ven. That's a lot of syllables. That's old. And that means that in 47 more days, I too will be...well, never mind.

I don't like numbers with 7's in them when we're talking age. Seven has an extra syllable which takes longer to say and, in my opinion, makes the number seem larger. Nicholas will be 7 on his next birthday. Se-ven. Too old. I don't like it. But to turn thir-ty se-ven. Ugh. 38 doesn't have as many syllables, so that won't be so bad. Or even 39 or 40. But thir-ty se-ven...

I can con myself into believing that I'm a year younger than Jason because he was born in '72 and me in '73. I can also pretend that there's a bigger age difference than there really is because he's older than me by for-ty se-ven days, and for-ty se-ven is such a big number. See how that works? I think when my birthday comes, I'll call it thirty-sept. (Don't say I didn't learn anything in 4 years of French.)

So anyway, Jason had a relatively uneventful birthday this year. No presents, no party. He's made it quite clear throughout the years that his birthday is just another day. If I were to ever try throwing him a party, it would be grounds for divorce. Blake was a bit disappointed that there was no party for Daddy. So to make up for it, I am to have a princess party for me in February. Ok. You're all invited.

It wasn't a totally boring birthday. Jason did participate in Lexi's PT today. And he shoveled the driveway. In shorts and a t-shirt. In Indiana. Stupide. (I did that spelling on purpose. It's that French thing again. I think I'll start using that word: stupide. Because stu-PEED sounds extra stu...well, nevermind.)

Sunday, December 27, 2009

I'm a loser.

Christmas is over and my house is littered with Playmobile and Bakugon. Watch where you step.

The holiday was great. We always love when Jason's brother Aaron and his fiance come into town and we spent a few days in Kokomo with them and the rest of Jason's family. We travelled up to Elkhart on the 23rd and it was a slooooooow trip because of the black ice. But we made it there safely in about 4 hours compared to the usual 2.5. We celebrated Christmas with my family on the 24th and then Santa made a drop off that night which the boys enjoyed on Christmas morning. 3 Christmas's in 4 days. No wonder my house is a disaster. But I won't complain. We are so fortunate. I need to be better about giving. I receive sooooooo much.

The big gift this year was the Wii. Thanks Mom and Dad! And I'm ready for a road trip so I can try out my new GPS. Thanks Jim and Connie! Blake doesn't have much to do yet with the Wii, but will watch and offer unsolicited advice. He did play one round of boxing with me. I lost. Nicholas has already becoming a bowling and tennis pro. I lost to him too. So I got out their new Operation game. I'm really tired of losing.

I went for a physical on the 23rd with my new doctor. I actually had Dr. S. as my doctor 6 years ago but had to change due to insurance. Luckily I was able to return to him. My blood pressure was great so I no longer need b/p medications. I haven't taken them in a few months due to the prescription running out, but no matter. I think all my walking is helping.

This last pregnancy about ruined me. Okay, I shouldn't blame the pregnancy. I've been really fortunate to lose the baby weight right away in all 3 pregnancies. Unfortunately with this last pregnancy, I lost the weight but then sat on my rear for 67 days in a hospital room. And ate nothing but fast food on my way to and from the hospital. So the baby weight that I lost so quickly, made a speedy return. And then some.

I started walking right before the start of the school year and for the first time in my life have been able to stick with it. So far. It's only been about 5 months, but before now, I don't think I stuck with any routine exercise plan for more than 5 days. And I'm actually enjoying it. I prefer to walk in the cold. 30 degrees is great if it's not too windy and the roads are dry. I don't like getting started, but about 15 minutes in, when my body has warmed up, I feel like I could walk for hours! I don't, but I would if I didn't have responsibilities to get home to. I usually walk about 45 minutes, 3-4 times a week. I've only lost about 5 lbs because I still eat sugar for breakfast and salt for lunch and dinner. (Don't ask about my snacking habits.) So there's a bunch of room for improvement. But it's a start. My pants are reeeeeally tight.

Wednesday, December 16, 2009

No more excuses...



My pregnancy, Alexis's birth, and all her medical issues were a great excuse to put off doing what needed to be done. I'll admit it--I used her. But I finally sucked it up and called the dentist. I have a lot of work that needs to be done and had to put it on hold. I HATE that stupid dentist drill. It's the one thing in the entire world that has ever caused me to have a panic attack.

So yesterday, since Jason was off work for the holidays and could watch the kids, mom and aunt Paula took me to the dentist. Since I have to be medicated, I have to be driven. And yes, it took 2 people to get me there. 2 people. But not because I put up a fight and have to be restrained to get me into the dentist's office. And not 2 people because they love me so much and are doing this out of the kindness of their hearts (even though that is kinda true). Nope. 2 people because the find me soooooo highly entertaining when I am under the influence of powerful hypnotic drugs.

If you ask Paula, she will be more than happy to provide all the entertaining details of previous dentist visits. Mom has witnessed a few choice moments herself. Yesterday wasn't much different. At least I kept my antics confined to the dentist office and went straight home. That's better than the time I put on a show for all the customers at the Noblesville Panera Bread.

Of course I'm glad that Alexis is healthy. I just need to find a new excuse to get out of going to the dentist.

Saturday, December 12, 2009

I'm getting a bit ahead of myself...

One of the things that our genetics doctor told us months ago, was to enjoy Alexis now. Because right now we can enjoy her just being a baby. Right now there are no other big medical concerns, no behavior issues. I clarified to him that there would be none of those concerns in the future either. I wouldn't allow it.

And I can usually block all of those future concerns out and just enjoy her precious babyness. She's so darn cute! And so happy. Her brothers adore her. Her parents think she's perfect. And she is. Extra chromosome or not. She's darn perfect.

But there are those moments when my mind wanders and I wonder what the future holds for her. I don't think much about medical issues or behaviors, but more about her adulthood: where will she live? Will she go to college or work? Will she always need some sort of adult supervision? I try to block it out, but sometimes I wonder.

But then I was talking to my aunt tonight. She is so excited to see her son who comes into town for the holidays. She hasn't seen him for a year. My brother-in-law will also be coming into town next week. We usually get to see him twice a year. Ugh. I realize my boys are only 4 and 6 right now, but the thought of seeing them only once or twice a year is unbearable! I already dread empty next syndrome. Might have to start working on them now to stay home and attend IUPUI. Maybe we can build an apartment over the garage...

So if Alexis lives at home for the rest of her life, I think I'll be okay with that. I don't want to send any of my kids out into that big, bad world. More and more people with Down Syndrome are living in independent environments, and maybe Alexis will too. It's a long way off and it's not something I need to worry about right now. But I also think that once she graduates from high school, maybe I'll just ground her to her room. For eternity.

Monday, December 7, 2009

8 months!

8 months old today! Maybe I'll buy her a pony!

I was looking at some pictures the other day (we have a few. Have you met JoJo? We have paparazzi in the family). I was looking at some pictures from before she had her heart surgery. I remember thinking, "she doesn't look sick at all." I will always admit I am biased, but I remember these thoughts of how "the heart condition can't possibly be that bad since she looks so good." But I compare those pictures to how she looks now, and it's amazing the change. She didn't look bad before, but now she's even gorgeous-er.

The occupational therapist came today and we showed off our new trick (I sound like I taught my puppy to beg). Alexis turned over from her stomach to her back, which she does on a regular basis. The OT was very impressed and also pleased that you can tell she's trying, and close to succeeding, at flipping from her back to her front. The OT also sat her up and I couldn't believe how close she is to sitting up unassisted. It almost brought tears to my eyes. Amazing how emotional this little girl makes me sometimes. Before her heart surgery, Alexis would be placed on her stomach and she would just lay there, barely even lifting up her head. You've come a long way, baby!

I'm loving the holiday season. Last year I was in a fog with all the news and feeling so overwhelmed by it all. (We learned of the d/s on Nov. 21 and of the duodenal atresia on Dec. 18) so I'm making up for it this year. The trees went up the Saturday after Thanksgiving. I have only 2 presents left to buy (I'll take voluteers for anyone who wants to wrap!) and the cards (with the exception of a few for which I need to confirm addresses) went out this morning. I've never been this far ahead of schedule. And the boys are so fun to watch, especially at this time of year. You should have seen Nicholas's face this morning when he realized it had snowed. Such joy! I wish adults felt that kind of joy with such simple things. (Read Facebook. NO adult was happy about the snow this morning.)

Side note: when I just wrote the above paragraph, I had to flip back to the very first post to get the December date. It was almost amusing to read of my relief that there was "no heart defect" and how upset I was that she'd be in the NICU for a whole 3 or 4 weeks. HA!

Hope you are enjoying the holiday season as much as I am this this year!

Thursday, December 3, 2009

RSV


I had to take Alexis to the doctor's office today for her first RSV shot. (Drove my SUV for an RSV. I RSVP'd ASAP.) Apparently, RSV is a respiratory virus that most kids get, but usually it just manifests like a typical cold. But some kids, like kids with respiratory issues (that's not Lexi) or kids that were premature (not Lexi) or have special circumstances (Lexi) can have complications if they get RSV. So the doctor ordered the shots and insurance agreed to pay (thank goodness since the nurse said it can cost up to three thousand dollars). Unfortunately, she gets this shot once a month from now until probably April. Ugh. And the nurse said that the more her weight increases, the higher the dosage and by next month she may have to get it in 2 doses. 2 doses means 2 shots. My poor baby. We had to hang out for 20 minutes afterwards to make sure she didn't have any adverse reaction to it (what is this? an allergy shot?) which she didn't. After this one, we won't have to wait the 20 minutes any more, but it worked out great since we ended up at the doctor's office as the same time as my girlfriend and we stopped and grabbed a latte afterwards. Mmmmmm, venti, non-fat, no foam, carmel latte. And a blueberry muffin. But I digress...

Today she weighed in at 14 lbs 11 oz. I thought that the baby carrier was feeling a bit heavier...

Sunday, November 29, 2009

This is just me...venting...

I've learned a lot since I found out about Alexis's Down Syndrome, did my research and read other parent's blogs. For example, I am to refer to my child as "my child who has Down Syndrome", not, "my Down Syndrome child." I understand the point that my child is not Down Syndrome, it's just something she happens to have. It's amazing to me though, how some people react to the wrong terminology. I'm a little afraid to be around some parents in fear that if I slip up (and I do slip up), I'll be scolded.

I read once about a parent getting angry because someone said that children with Down Syndrome are always happy. I realize that a person shouldn't generalize. I realize that obviously no one is always happy. But get mad about this statement? People tell me often that my boys are always happy. I don't get mad about that. Why would I get mad if someone told me that Alexis is always happy? Down Syndrome or not, she is almost always a happy baby! Everyone should be so lucky.

And, going back to the topic of my boys, I have also learned that I am not to refer to them as my normal children. They are supposed to be called "typical". I looked up the words in my thesaurus. Hmmmmm. Same thing. Apparently, by calling the boys normal, I'm implying that Alexis isn't normal. So I guess it's okay if she isn't typical, but it's bad if she isn't normal. Even if normal = typical? Seriously? (And I don't call them normal anyway, because they're not. Normal 4 and 6 year olds don't sit in their bedroom playing quietly together for over 5 hours!!! Yes, I had to go keep checking on them today to make sure they were still there. My kids aren't normal. But I'll try to make sure not to use that word anyway.)

(Note: I DO agree, and most everyone across the board that I've ever met agrees, that the "R" word is off limits. Bad word. But while I've never used the word, I'll admit that back in the day I made my share of "short bus" jokes and am ashamed. So I can't throw stones. But I can let people know here that the "R" word is a bad word.)

I'm not writing this to get people up in arms. I'm venting. Forgive me. This is just my opinion. But I become quite frustrated sometimes because it seems there are so many "guidelines" one has to follow to make sure to never offend. I read today where a mom said she didn't like the word "disability". I've heard of people who would rather describe a person as "differently abled," as opposed to "disabled". I'll probably screw that up. And more than that (because I realize that some of these guidelines are important) I become frustrated in the way people react when they disagree with how something is said. My point I guess, is that we get so carried away with what is acceptable and what isn't, even with the best of intentions, that the main thing that this has accomplished with me is that I now hesitate to get involved in the down syndrome community (or is that "the community of people who happen to have down syndrome"?). I fear that I will put my foot in my mouth or else become humiliated in public when I am scolded for ticking someone off when I accidentally use a word that they don't approve of.

But now I'm done. And for Alexis's sake, I'll suck it up because being involved is what's best for her. But if I ever meet you in the future and accidentally let a word or phrase slip that you don't approve of, please know that once it slips, I will probably be fully aware of my goof and embarrassed enough without anyone pointing it out.

Saturday, November 28, 2009

A milestone!

I try not to compare Alexis to other babies. I see babies younger than her, both those with and without Down Syndrome, who can roll over or sit up, and I tell myself that every baby is different. And I also remind myself that even though she's 7 months old, because she was in the hospital for over 2 months, PT and OT expect her to be at the level of a baby 2 months younger. But I can't help it. I hear of a baby that's younger and doing all these things that Lexi can't yet do, and I wince. Just a bit, but I do.

But then, the day before Thanksgiving, she rolled over. Jason was with her so wouldn't you know, I missed it. But she did it. She was on her stomach and rolled on to her back. And she did it more than once. Hallelujah!!!!! Today she finally did it for me. Twice. And you can tell she wants to flip the other way as well. It's amazing how much more those milestones mean with Alexis.

And please know, that while I wish for her to reach these milestones, and become overjoyed when she does, I still appreciate every day that's she's a baby. I love her tiny features, her full cheeks, her funny baby laugh. This is our last baby. I'm enjoying every moment of it.

Wednesday, November 25, 2009

A year later...

It was exactly one year ago that we received the call..."your baby does have Down Syndrome..." Hard to believe it's been a year. In one year we've been through one child birth, 67 days in the NICU, 6 days in the pediatric hospital, 2 surgeries and more doctor visits and therapy sessions than I can count...

But I look at her now and see nothing but a happy, healthy, beautiful baby. What a blessing.

Last Thanksgiving I walked around in a bit of a fog. This Thanksgiving...so much to be thankful for:

3 beautiful children,
a supportive husband who is the best dad in the world (except for my own, of course),
a loving family,
dear friends,
a roof over my head and food in the pantry,
a free country,
abundant love, humor, and joy every day.

Thank you God. I am so blessed.

Monday, November 16, 2009

No we do NOT have the croup...

I called the doctor on Friday. Alexis had been coughing and stuffy for a few days. She had a temperature a few days prior that hit 101 but it quickly lowered and remained in the 99's. Amazingly during all of this, she seemed as happy as ever. She was continuing to eat and pee and poop just as like ususal. But Friday she woke up sounding hoarse and a bit "rattley". The nurse told us to come in, just to be cautious.

Alexis weighed in at 14 lbs and no longer had a temperature. Dr. Miller listened to her but said her lungs were fine. She checked her ears and had to remove some wax from one. Dr. Miller thought she was fine. Just a cold. But she told us to watch her and to call in should her temperature rise to 101 or higher. If that were to happen, Dr. Miller guessed it would be an ear infection. I also found it interesting that should we need medical care over the weekend, that she suggested we go to Riverview Hospital as opposed to one of the Med Check types of places. Good to know...

If this had been one of the boys, I probably wouldn't have thought twice about it. But of course I'm extra cautious with Alexis after all she's been through. And I can't help but wonder how much pain or discomfort she would have to be in before she would start acting fussy or lethargic. After going through 2 major surgeries, what's a puny cold or ear infection???

Alexis was fine all weekend. Still no temp, but she continues to be stuffy and have a bit of a cough. She's hoarse and therefore the cough sounds terrible. I'm so glad I received reassurance from the doctor that she's fine. But you should see the looks of disgust I get from other adults when we're out in public and Alexis coughs this hideous cough that sounds like the croup. It's probably wrong that I find it a bit funny...

Monday, November 9, 2009

Therapy resumes...

Alexis resumed her occupational therapy today. She still receives OT and PT every other week and it's very convenient that both therapists had Mondays at 3 open and can alternate weeks; better for me to remember, better for spacing out therapies for Alexis.

So the OT was immediately impressed at how she'd grown. It's been almost 2 months since they've seen her and it's amazing what 2 months and a heart surgery can do to a baby. The OT was thrilled at how much better she sat up in her Bumbo seat, how much better her head control was, how much stronger she seemed. She started the session with the Bumbo seat and everything went well. When she moved her to her tummy and had her rolling onto her stomach, Alexis got mad quickly. After only a few minutes Alexis was screaming her loudest scream and we stopped the session after a half hour.

Alexis seems to be doing better with eating rice cereal. I've tried some different things and she doesn't spit it out as much now. And she seems to enjoy it more and more. When the spoon is coming towards her, the mouth is wide open.

In other news, Nicholas is reading. Every week he has a new sight word and he amazes me with the words he knows but hasn't officially learned yet at school. He has started bringing home beginning books every week and will read the whole thing to me with hardly any help. It's a big joke in our house when I plead with Nicholas and Blake to stop growing. But they continue to insist they can't stop...they HAVE to get bigger. Sigh.

Tuesday, November 3, 2009

Restrictions are lifted! And happy belated Halloween.




Today is the 6 week mark. It's been 6 weeks since Lexi had her heart surgery. Amazing. It's amazing how much she's changed in 6 short weeks. She's definitely eating more and putting on weight. I think her cheeks have tripled in size since her surgery. Luckily, she is once again sleeping through the night. Today our restrictions were lifted. She can once again lay on her tummy. She seemed happy when I did this. I'll bet she'll be rolling over soon, now that we can do tummy time again. She's resuming her therapies through First Steps on Monday. We can also go back to lifting her up under her arms. For 6 weeks we've had to scoop her up under her bottom and back in order to pick her up. Usually it's not a big deal, but it can be a pain when lifting her out of certain seats or from certain angles. She's been lifted a few times under her arms today and the first few times she seemed fine but this evening she would fuss. I'm hoping she's just not used to it and it was irritating her. Let's hope.

This past weekend was fun. Nicholas turned 6 on Friday so we had a birthday/halloween bash at Paula's on Saturday. All the cousins and a few friends came. It was a fun day, even if it did revolve around Transformers and Bakugon. (Don't ask.) Let me just say, that while I don't usually do first birthday parties for my kids, Lexi will be having a very pink, very girly party in April. No Autobots allowed.

Wednesday, October 21, 2009

6 month check-up

The sleep schedule ain't what it used to be. Last night Lexi woke up at midnight and didn't fall asleep until 3 a.m. One nice thing though, is that when she's fed, dry, and happy, she will lay awake in her crib content until she falls asleep on her own. I laid her down in her crib at 2 and watched her (love the video baby monitor!) lay there content, entertained by her mobile, until she drifted off an hour later. I'm not always this lucky, but it's nice that she can put herself to sleep at times.

I gave Lexi her first taste of baby food on Tuesday. Most of it came right back out. I think the protruding tongue and the enjoyment of blowing raspberries might increase our degree of difficulty where eating is concerned. But she did get a very small amount. Hopefully as her eating skills improve, so will her sleep.

Alexis had her 6 month check-up on Monday. She's doing great! Her weight was up to 13 lbs, 1 oz. Over a pound in 2 weeks! (Keeping in mind, different locations, different scales.) She was on 27 calorie formula (we use regular powder formula but have a different ratio of formula to water than most: more formula, less water.) But we can decrease the calorie count now from 27 cal to 24 cal. She is in the 7th and 10th percentile for height and weight, and that is on the regular growth chart, not the d/s chart.

Dr. Miller thought her heart sounded great. She said that if there wasn't a scar, she would never know Lexi had surgery because there is no trace of a murmur. Her medication was changed from Prilosec to Prevacid. She was given 3 immunizations (there are a few she can't get yet due to having had a blood transfusion for the heart surgery) and she's now old enough for the flu shot (but they didn't have any in stock). Alexis goes back to the pediatrician in 3 months.

Wednesday, October 7, 2009

Happy 6 months Alexis!!

This is a bit overdue, but I'm tired. Little Miss I'm-such-a-perfect-baby-because-I-have-slept-through-the-night-since-coming-home-from-the-NICU-at-2-months-old has been waking up in the night. Yawn. And she no longer wakes up cooing and laughing as if to say, "I'm awake Mom, but take your time and come get me when you're feeling up to it." Now it a screaming, "Come. Here. Now." Once she sees me, she smiles and coos. As long as she feels okay. She was doing great in the pain department, and no longer on the Tylenol 3. But the past few nights (she seems fine during the day) she's been fussier and seems uncomfortable. I do wonder if she's teething. Once she gets Infant Tylenol in her, she seems better.

Alexis had her follow up appointment on Monday but I had actually called the nurse practitioner the previous Thursday with concerns because her incision scar was looking too red and maybe infected. They had me come in for reassurance and they agreed that it looked a bit concerning, but didn't feel they needed to start antibiotics. They took out her one stitch and wrote me a prescription for Bactroban. Everything was fine.

On Monday I took Lexi in for the follow up appointment. They thought the incision looked great (there was still some redness, but they thought it was fine). The EKG was fine, the echo was fine. She weighed in at 11 lbs, 7.5 ounces. They were thrilled to hear that she eats a lot more and weren't too surprised to hear that she is awake more often. There is a small "leak" that they noticed in the echo that will probably heal itself, is common, and not a concern. Alexis was taken off one diuretic and the other is being weaned for 5 days and will then be discontinued. She's still on Prilosec and a vitamin.

It's hard to remember when looking at her that she's had major surgery so recently. We can't pick her up under her arms for 6 weeks following the surgery which is a hard habit to break. No tummy time either. It seems like her face has filled out overnight. Jason thinks her coloring is a lot better. Alexis doesn't have to go back for 6 months. We seem to have gotten back into our routine for the most part. I haven't called Lexi's therapists from First Steps yet to arrange services to start back up.

The boys are doing great. They've been counting down to Halloween since last Halloween--literally. Nicholas wants to be a Transformer (he has a Star Wars costume and I am trying to convince him that the two look almost identical. But apparently a Clone Trooper does not equal a Deceptacon.) and Blake wants to be...wait for it...a pirate. When they aren't discussing Halloween, the talk revolves around their birthdays. Hard to believe Nicholas will be 6 this month. He's excited to have a Transformer birthday party. Again. (It was last year's theme as well.) Blake likes to plan his party which won't be until January, but by talking to him you would think it was this weekend. He'll be having a Pirate themed party. Again.

Off to bed...

Tuesday, September 29, 2009

Following the hospital discharge...

So Alexis made it home safe and sound on Sunday. Monday I got a call from the nurse practitioner. She wasn't working on Fri, Sat, or Sun and wasn't expecting us to discharge before she returned to work yesterday. Needless to say, she was quite surprised to get to work on Monday and see that Alexis was gone. She made our follow up appointment for Monday morning. We will meet with her, the cardiologist, and the surgeon. She made sure that Lexi had pain medications (we have Tylenol 3) and gave us some directions: there are 2 immunizations she can't receive for 6 months due to having a blood transfusion, Alexis will need antibiotics if she should have another surgery of any kind in the next 6 months (let's pray NOT) and I was to remove her bandage today. Ugh. For the squeamish, proceed to the next paragraph. They had a clear bandage over her incision and the hole where her drainage tube had been. I was afraid to remove it for fear of great bleeding because the way it looked, one would think that the bandage would rip the scab right off. Thankfully, the bloody scab came off, but it's healed up underneath and the scar looks great! And Alexis didn't even flinch when I did it. I should be a nurse.

Alexis is doing great since coming home. Of course she's still healing and has pain issues and discomfort. When you look at her and she looks so great, it's hard to believe that in the course of a week she's had open heart surgery, been hospitalized and is already home. Who comes home from open heart surgery in 6 days???!!! She's my little miracle girl. Anyway, she isn't quite back to her laid back, easygoing ways. She's quicker to cry, she squirms more and needs to be held more. She is finally now acting like a normal baby. I was just spoiled before. I also realized, after a few tearful episodes (her, not me), that with a healed heart, came a bigger appetite. (A hearty appetite--get it?) She used to eat 3 ounces at a time, 4 ounces max. Now she can eat 5, sometimes 6. She naps very little during the day, but I'm not complaining because she's still sleeping all night.

Thanks for all the prayers. We are very blessed that Alexis received such excellent care, had the best doctors, and was in such a great hospital. Although we still can't believe Peyton never stopped by...

Sunday, September 27, 2009

It's official...

...Alexis is being discharged!

Today just may be the day...

Alexis made it all night with no oxygen. Her last IV has been removed. (Alexis is happy that she can finally suck her thumb again!) The cardiologist was just in and thinks she looks good. He just ordered an echo which has to be done before they will discharge her and if it looks good, she can go home today!

Saturday, September 26, 2009

Did someone say "home"?

I was greeted this morning by BIG Lexi smiles. My happy baby is BACK!

The cardiac surgeon came in and said that if she continues to eat well and is still without oxygen tomorrow, he saw no reason why she couldn't go home. Then, after he left I realized that he thought she was currently without oxygen because he was looking at the wrong oxygen tube, when she actually is still on a quarter liter. The nurse tried to turn off the oxygen again a while later but her sats dropped and we had to turn it back on.

Even if they can turn off the oxygen tomorrow with success, it wouldn't surprise me if they'd say, "let's wait another 24 hours to make sure she does okay". I'm totally guessing here, but I'm not holding my breath for a discharge tomorrow. I told the nurses that I prefer to be overly cautious. If they think they should wait until Monday, or even Tuesday, it would be okay by me.

I was so pleased that Lexi's pediatric surgeon from when she had her duodenal atresia surgery in the NICU stopped by. He was on the unit visiting another patient, happened to see us (one of the benefits of being located right across from the nurses station) and he came in for a visit. Such a nice man! He oooohed and aaaahed and asked about her and looked at her new scar and the old scar. He didn't have to stop by. What a good guy. It's a big loss for St. Vincent Hospital that he's moving to Colorado.

I don't think I'd updated about Mom's status, so here goes. The cancer is back already. She went in for her 3 month follow up and already there were 3 tiny tumors. Luckily, as well as the last surgery went and as quickly as she healed up, they've decided this time to do the surgery as an outpatient which thrills her. (Is it possible to be "thrilled" regarding having surgery??) So please add Mom and Dad to your prayer lists.

Friday, September 25, 2009

Movin' on up...

When I arrived at the hospital this morning, Alexis was down to one IV and was starting to wake up. The nurse said she hadn't had any pain meds since 4 a.m. and was doing well. She seemed relatively content and didn't have any pain meds until about noon. The atelectasis is clearing up but she still requires a small amount of oxygen through her nasal canula. The cardiologist says that her heart sounds great and he removed her drainage tube. Yeah! She has been eating well and they finally moved her off the PICU to the third floor pediatric unit!

The pediatric unit is great. It's brighter, happier, and bit noisier. It's not nearly as depressing as the PICU. And we are located right across the hall from the nurses station. Alexis has been alert yet has napped well. She's currently jabbering away and even smiled a while ago.

Happy baby=happy mommy.

Thursday, September 24, 2009

Slowly but surely...

Every day gets a bit better than the last. The pain meds have been decreased a bit although she still gets Tylenol 3 and morphine. She's been a bit more alert. Her heart sounds good according to the cardiologist. I was hoping she'd be off the ICU by now and up on the pediatric unit, but they're still being cautious. The atelectasis is still in her left lung and is now also in her right. The doctor said he wants the atelectasis to at least start improving before they would move her to the pediatric floor and I am fine with that. I'm glad they're overly cautious. Her temperature has been fine today and she even started on formula. So if we can just get these lungs inflated, we'll be doing great!

Wednesday, September 23, 2009

PICU: Day 2

Wow. When they warned me that the couch in the room was uncomfortable to sleep on, they knew what they were talking about. Ugh. I was up about every half hour and finally at 4:30 gave up and got up. I should have just tried sleeping standing up. I might have been more successful. And the couch was made for short people. I had to turn at an angle just so I could hang my feet off the end. Okay, maybe not just my feet. If I angled just right I fit on the couch from about the middle of my head to my shins. Me Amazon Woman. Humph.

So Alexis is doing well: not great, not fair. Good. She slept well last night as long as she had Ativan in her system. One test they did indicated decreased hemoglobin so she required a blood transfusion which helped her right away. It wasn't surprising to me after seeing all the blood draining out of her little body through her tube.

She slept most of the day. When she would get restless they would either give her Ativan or Morphine and both seemed to help. A chest x-ray revealed atelectasis--a partially collapsed lung. Not a huge worry (she had this when she was in the NICU) because it will hopefully take care of itself. But to help out her lung and her breathing they wanted her more alert and more upright. It's a fine line. You want her medicated to dull the pain, but you don't want her too sedated because she'll breath better if she's awake.

She ate for the first time today. I gave her some of my Dunkin Donuts. She really likes the jelly filled donut holes.

Just kidding. Can you tell what I'm craving? But seriously, I was able to give her some clear liquids (pedialyte) and they will see how she tolerates that before starting her on formula. She had almost an ounce this morning with no problems. About 5 p.m. she woke up and was more alert than she'd been since her surgery. She was a bit fussy, but not terribly so. I gave her more fluids and she had almost an ounce and a half of a non-fat carmel latte.

It was really nice seeing a couple NICU people today. I got to see the NICU First Steps Coordinater and then one of our favorite NICU nurses stopped by.

There is a possibility of Alexis being moved to the pediatric unit tomorrow if things go well. Although between the lung issue and having a slightly elevated temperature (which went back down after a dose of tylenol), we'll just wait and see. She did get one of her 3 iv's out today and might have the drainage tube removed tomorrow. I was glad they changed her wound dressing today so she wasn't so bloody. The incision looked pretty impressive.

Jason and I got back home tonight in time to see the boys before they went to bed. They seem to be having no concerns regarding all that's going on. They are glad to know Alexis is okay, but I think they like all the attention of their grandparents, going out to eat at almost every meal, and getting to spend the night at Aunt Paula's.

Time to go to bed now. I'll head back to the hospital tomorrow after I put Nicky on the bus. This time I'm certain I won't have to work too hard to fall asleep. I'll just count donut holes...

Tuesday, September 22, 2009

Sleep soundly my little babe.

Alexis came off the vent this afternoon after waking up and staying pretty alert for a short while. I was even able to hold her. She had a hard time getting into a sound sleep, lots of fidgeting, pulling out her nasal cannula, and seeming unsettled. I was told she could have some extra pain medication every hour, but that didn't seem like enough to me since she still seemed uncomfortable. So they finally gave her some Ativan to calm her and she appears to be peaceful.

It's was cool to learn that our respiratory therapist today, who happens to be married to our nurse this evening, has a daughter with Downs.

I'm off to sleep on the hospital sofa. After two short nights, I don't think I'll have much of a problem getting a few zzzzzzzzz's.

I'm with my baby!

Alexis is still sedated, but you can tell she's trying to wake up. Once she's awake they will try turning off the vent and if all goes well, they will take the vent out. She has a bandage over the incision, 3 IV's, and a tube coming out of the bottom of the incision. Her hands are currently restrained and you can tell she doesn't like it. Once she wakes up she will probably not be very happy due to the vent, but she is still on strong pain meds to keep her comfortable.

It's a different world in the PICU than it was in the NICU. There's a tv in the room, we can eat in the room, and I can use my CELL!! YEEEEE HAWWWWWWW.

Surgery complete!

At 10:15 we were told that they were already closing. We were taken to the PICU waiting area (still here) and about 10:30 the surgeon came in. The surgery is done. There were no surprises, pretty much what they expected. In another half hour or so we will be able to see her. She will be sedated probably until tomorrow morning.

Oh the relief.

Pre surgery pictures



My heart hurts

Thank goodness we were able to feed Alexis up until 3 a.m. She took a good 4 ounces at 2:30 a.m. and stayed asleep during the whole drive to the hospital. She was all smiles as they checked her in, put her in her cute little hospital gown, and visited with her parents and grandparents. At around 7 a.m. the grandparents said their goodbyes and Jason and Alexis and I went with the nurse up to the surgery area.

Saying goodbye to her and watching them carry her off was awful. It helped that she was in good spirits the whole time. I'm a wreck. Guess that's to be expected.

The 4 grandparents and Jason and I are currently in the surgery waiting area at St. Vincent. We have a pager and a nurse who will keep us updated. It's nice that the cafeteria is real close and there are computers in here. I'm hangin' in...it's gonna be a long morning.

Monday, September 21, 2009

Pre-op

We reported to St. Vincent hospital today at 11 a.m. for Lexi's pre-op appointment. She had an EKG and an echo. Dr. K showed us the hole in her heart on the monitor and describes it as "moderate" in size. It's always been described as large before, so moderate is fine with me. The nurse practitioner spent lots of time answering questions and giving us info. We can feed her up until 3 a.m. tonight which is a huge relief to me. Alexis is always asleep by 9 p.m. and sleeps until at least 6 a.m., but I'll be happy to wake her up for some extra feedings if that will help her out tomorrow morning. We have to be at the hospital by 6 a.m. We met Dr. A for the first time and he will be the one performing the surgery. He discussed the risks. Not fun to hear. There is a 2% chance that she wouldn't make it through the surgery. The number might seem low to some, but when you figure that we had a 1 in 300 chance of having a baby with Downs...2% is not comforting. Not at all. But I still feel like she will be fine. We signed all the consent forms. (Paperwork for refinancing the house was nothing compared to this!) Alexis will have to receive a blood transfusion during the surgery. It's possible that they will have to put in some pacemaker wires. There was lots of stuff that made no sense to me, but I have a hard time taking my mind away from that scary statistic the surgeon mentioned. Everyone has said the surgery will take 3-4 hours. The surgeon predicted 2.5 hours. Everyone has said Alexis will be in the hospital for 7-10 days. The surgeon said a week, give or take a day. She will probably have her vent in over night. She will be heavily sedated for a majority of the first day.

We were then walked over to another area of the hospital for more paperwork. We walked a far way to get a chest x-ray, walked back to where we had filled out the paperwork, and then walked to the Children's hospital for a blood draw. I told them I do not want them trying to get blood from her heel. It never works and they end up having to put in a needle. So they did the needle instead. My poor baby. The turniquet really hurt her and then the first needle didn't cut it, so they had to start again on the other arm. And then they had to keep pushing the needle around in her arm to get the vein. My poor baby just screamed. I wanted to do the same, but held it together. I just keep thinking how I can't imagine going through all of this with a toddler or older child. At least Alexis will remember none of this.

3 1/2 hours later, we were on our way home. Ugh.

Now, on a lighter note: My aunt had heard of a website that is used for blogging when people have medical things going on with them. I just signed up for it to keep people updated on Alexis. I will cut and paste exactly what I'm writing on this blog but you may want to try the other site because a) I don't think you will have all the difficulties with making comments and b) you can subscribe to that blog easier and if you want to enter in your name and e-mail (under the "guestbook" tab and check at the very bottom that you want to receive updates), you will get sent a notification every time I update it. Just thought I'd try it to see how it goes. I will limit the new blog to only updates on Alexis, so you may want to continue checking in here for additional pictures or any news not related to Lexi.

The website address for the new blog is: http://www.caringbridge.org/visit/alexis2009

or you can go to www.CaringBridge.org and enter in the website alexis2009

Sunday, September 20, 2009

Preparing...


My mind is pretty much consumed with Alexis's surgery this week: what questions I need to ask at the pre-op appointment tomorrow, what I need to pack for the boys when they go to Paula's house on Monday night, what I need to remember to pack for the hospital for Alexis, what I need to have ready for the boys this week...

I've heard a lot of people say what a wonderful place the Peyton Manning Children's Hospital is, and I know it to be true. But what I wouldn't give to be able to return to the NICU where I already know almost everyone. I miss my NICU family. It's a strange thing when you go from spending all your time with these people who you get to know so well and then suddenly all contact stops. It's kind of sad even. I sent an e-mail out to our former doctor and nurses to let them know of Lexi's surgery. Hopefully I will hear back from them.

On the plus side of going to the Children's Hospital instead of the NICU: there will be a tv in the room, a telephone in the room, I can eat in the room...still no cellphones, but I'll probably sneak a text or two from time to time. Unfortunately, since I quit my job at CICOA, I had to give back my laptop. So the updates won't be as frequent unless I can convince Jason to buy me a laptop tomorrow.

Tomorrow is our pre-op appointment. Jason's folks will be here to pick up the boys from school and watch them while we're gone. Mom and Dad will come in tomorrow also. The boys will go to Paula and Ron's on Monday night so that the grandparents can be at the hospital for Tuesday morning's surgery. Then Mom will be at our house for as long as we need her to be with the boys. I have the best Mom. We are so lucky to have such loving and available family to help out. And we have wonderful friends, too. So many friends have called to offer to do stuff for us while Alexis is in the hospital. We are blessed.

Thank you for your prayers and thoughts this week while Alexis goes through this surgery and heals. I'll keep you as updated as possible. We know that Alexis is a tough little cookie and she will be just fine. God is good.

Monday, September 7, 2009

Friday, September 4, 2009

Alexis's surgery details


Yesterday Alexis had her cardiologist appointment. Since she's almost 5 months old and has put on a bit more weight (now at 10 lbs, 8 oz), Dr. K decided the time had come to schedule her heart surgery. (For those who don't know, a week before she was discharged from the NICU, she was diagnosed with a VSD--a large hole in her heart, that requires surgery to repair.)

I met with Sara, the nurse practitioner, who was able to tell me what to expect. On Monday, September 21, she will have her pre-op appointment where she will have some tests done (EKG), blood drawn, x-ray, and will be seen by the cardiologist and the surgeon. We will also have to sign paperwork and consent forms. It ought to take about 3 hours. At a later time we will be told at what time she has to stop eating on the night of the 21st. Ugh. She will be home with us that night and then report to Peyton Manning Children's Hospital (at St. Vincents) first thing in the morning on Sept. 22. Again, I don't know any times yet.

An hour or two before the surgery, Alexis will be sedated and they will then intubate her, put in any IV's, a catheter, etc. Family will have to wait in the waiting room but Jason and I will be able to go with her when she's taken to the surgical area. When she goes to the operating room, we will then be taken to the surgery waiting area. The surgery may take up to 4 hours.

After the surgery, Alexis will be taken to her private room in the PICU (Pediatric ICU). Hopefully they will be able to take out her ventilator later that day and maybe even eat later that day. I believe she is expected to be in the PICU for a day or two, and assuming everything goes well, she will then be moved to the Pediatric Unit. Most kids with this surgery stay in the hospital for 7-10 days.

One parent is able to sleep in Lexi's room with her. 2-3 visitors are allowed at a time but they may very well limit this with flu season approaching (who are we kidding. Flu season is here! Have you seen the news lately?) Siblings are the only kids allowed to visit. If you have even a hint of a cough or a sniffle, PLEASE DON'T COME!!! With Alexis expected to be in the hospital for only a week, I'm fine (again, back to that flu paranoia of mine) with no visitors coming (grandparents are the obvious exception) just to play it safe. Once she's healed and we're home, the masses are welcome. But I'm not cooking.

Thursday, September 3, 2009

Typing in my sleep...

The surgery has been scheduled. Alexis will have her pre-op appointment on Monday, September 21. She will return home with us that day and then go back to the hospital on September 22nd for her heart surgery. I don't know times yet. I met with the nurse practitioner (loved her!!!) who gave me some details and some reading materials. I'll post more details tomorrow, but for now...

Good Night!

Insomnia


Maybe I'm a bit more anxious about today's cardiologist appointment than I thought. I've been awake since 3 a.m.

In my mind I have continually felt like the heart surgery is still months away but then it struck me last night, Alexis is just days away from being 5 months old and if they want to have the surgery done by the time she's 6 months old...they could very well tell us to bring her in next week for the surgery. I know it's pointless to stress about this kind of thing. "Put it in God's hands!" I keep trying to tell myself that, but easier said than done. Anxiety is exhausting! Thank God I have so much family available to me to help out with watching the boys. I can't imagine if on top of the stress of getting Alexis through this surgery and hospitalization, I also had to worry about the boys and getting kids to and from school and activities. I am SO blessed!

And speaking of anxiety, I may have to stop watching the news. All you hear about any more is this swine flu! Ugh! I usually have the mindset that the media is only going to make things sound worse than they are...never better. But you can't help but hear these numbers of how many people are going to be affected, how many people could die... I called the pediatrician's office yesterday to see about getting the flu shot but they don't have it in yet. I think I may take the kids over to the CVS minute clinic tomorrow and all 3 of us can get our shots. I'll buy them some tootsie pops first and they should be just fine. If not, we're off to the dollar store. I've never taken them there before, but what could be better for a 4 and 5 year old than to walk into a store and be told, "pick out anything you want and I'll buy it for you." My parents never said that to me when I was a kid. So I must love my kids more than they loved me.

Hmmmm....4:35 now. What to do, what to do...

Thursday, August 27, 2009

Thanks Larry!

My mom's friend put together a video of Alexis and family and put it on you tube...

Go to www.youtube.com and in the search bar type: larryinbristol

Wednesday, August 26, 2009

Swine Flu, Fussy Muscles, and Grabby Hands



Nicholas's school was on the news the past 3 days because of swine flu. A student has type A influenza which, in 98% of cases means they have the H1N1 virus. Great. Luckily, the child was diagnosed over the weekend and hasn't been to school this week. The school has been disinfected. I had to go to a meeting at the school tonight and when I walked in, my first thought was, "is there a swimming pool in this building?" Ahhhhh. Cleaning chemicals. And they installed hand sanitizer stations. Good.

At Lexi's last pediatrician appt., Dr. M strongly advised us to all get the flu shot and, when it's available, the H1N1 vaccine. Since Alexis can't get the vaccinations until 6 months old, it's important that everyone around her get the shots. Yuck. I'm so lucky that I have such healthy kids. Never had the flu shots, never had more than the 24 hour bug. But all the news coverage and the talk with my doctor make it sound soooooo scary--especially when you have an infant at home--an infant with a heart condition. Guess we'll be getting the vaccines this year. I'm already planning in my head what I'll do for the boys after their injections. Sucker? Ice cream? Toys? A new pony?

We had our first OT session on Thursday and our first PT session on Tuesday. So far so good. Except that my sweet little angel baby cried and fussed and was mad the whole time. Murphy's Law at work. They assessed her muscle tone, did some exercises with her, gave me suggestions of things to do with her like tummy time, encourage the pacifier, etc. The most interesting thing I learned was when the PT said, "she does have low muscle tone, but she's still really strong!" I had always thought of muscle tone and strength as being the same thing. Nope. You can tell Alexis has low muscle tone because of how her arms and legs fall to the sides when she's laying on her back, but you can also tell that she's very strong when she grasps on to things and kicks out her legs. Her strength will help her a lot with dealing with the low muscle tone.

I'm excited that she is finally reaching for things. She's reached for a few things before but I could never tell if it was just coincidental that she was stretching her arm out in the direction of something. But now it's more frequent and even PT would say, "that was an intentional grasp!" Yeah. At least in all her crying and fussing during the PT session, she still impressed them. PT and OT are now scheduled to take place on alternating Thursdays.

Friday, August 21, 2009

The Special Mother, by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how these women were chosen? Somehow I visualize God hovering over Earth, selecting his instruments for propagation, with great care and deliberation. As He observes, He instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron saint...Cecilia."

"Rutledge, Carrie, twins. Patron saint...give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a child with a disability."

The angel is curious. "Why this one God? She's so happy."

"Exactly. Could I give a child with a disability a mother who doesn't know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience or she'll drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today, she has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But Lord, I don't think she believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness, is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes she is a woman whom I will bless with a child less than perfect. She doesn't realize it yet but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy' for the first time, she will be witness to a miracle and know it. When she describes a tree or sunset to her child, she will see it as few people see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is there by my side."

"And what about her patron saint?" asks the angel, his pen poised mid air.

God smiles. "A mirror will suffice."

Tuesday, August 18, 2009

Like my Legs?

It's hard to count the number of times I've heard, "boy I wish they'd had those when you kids were little!" Apparently, 36 years ago, diapers, cribs, and formula had not yet been invented. "And we took you home from the hospital sitting in my lap because no one had carseats." I'm just amazed they didn't have to walk home from the hospital, in the snow, uphill, barefoot.


It's amazing what has been invented just since my 4 year old was born.


When Alexis was discharged from the hospital, not only did they send us home with formula, but we were given these single serving packets of formula. I already have the divided container that I can store premeasured amounts to carry in my diaper bag, but it's nice to have these little packets of formula as a convenient emergency supply. I was recently told by someone that these aren't new, but I've never had a baby on Enfamil, so these handy packets were new to me.



The newborn sized diapers that I purchase are the same brand that Nicholas and Blake used. but now there is a stripe that runs the length of the diaper. The faint yellow stripe turns blue when the diaper is wet. GENIUS! So much easier than squeezing the diaper and making a guess. Or pulling open the leg hole to check or sticking in your finger to feel for wetness. Yuck. A simple blue line. I had a coupon for the Huggies equivalent and found it interesting that while their newborn diaper had this same stripe, the size 1 diapers do not. Apparently, when the baby hits 10 pounds and moves up to the size 1, the stripe is no longer needed. At 10 pounds, my baby should be able to inform me of her wetness status. Maybe "genius" is too stong a word...


Have you seen the Bumbo seat? A sturdy, supportive, cushioned seat that a baby can sit upright in before they're able to sit upright on their own. A baby should be able to use it as soon as they can support their own head. BRILLIANT. How nice for a baby to get to watch something other than a ceiling fan! Although I will admit, the ceiling fan has become our best form of baby entertainment.

And finally, and this one wins simply for the cuteness factor, babylegs. Adorable, fashionable, baby legwarmers. Alexis finally today wore hers for the first time. In this hot muggy weather, she is most comfortable in a simple onesie, but when we suddenly get blasted by air conditioning, how easy it is to put on her babylegs. She can be strapped in her car seat and doesn't have to be unbuckled to put them on. Babylegs also make it easier on the knees when babies start to crawl. And all the different colors and patters are SO ADORABLE!! I had some happenin' legwarmers back in the 80's, but I wasn't nearly this cute. Shocking I know, but trust me on this one.


Monday, August 17, 2009

Reunion

Yesterday was the St. Vincent annual NICU reunion picnic. From 1-4p.m. (it was HOT!) at a park in Zionsville our whole family was invited to go and eat and play and see some of Lexi's NICU nurses. I had no idea what to expect. Wow. Hundreds of people were there. I've never seen so many multiples in my life. It's funny seeing all the triplet and quad strollers rolling around. They had about 8 huge bounce houses which the boys LOVED! Hamburgers, hot dogs, brats. Lots of games and prizes, although Blake and Nick never got out of the bounce houses long enough to do anything else. The best part for me though was to see some of our old nurses. Several weren't there of course because they were working or just not able to come. But we still saw several of our favorites. They all remembered Alexis since she was probably one of their most recent patients. Dr. A was there and it was so nice to see her. She even called me Kendra instead of Mrs. Smith! She asked me to keep her informed of when Alexis has her heart surgery as she may try to stop by the hospital at that time.

Today I talked to our new First Steps OT. She will come for our first OT session on Thursday at 9:30 and it will be our standing appointment every other week. The calendar is filling up fast. Preschool starts September 9 which will be M,W,F mornings. Can't wait to see how we fit in PT because apparently they had to beg and plead for her to take us on since she was already full.

Nicholas started his second week of kindergarten today. I'm so glad he's enjoying himself and is happy to tell me about his day. On every paper he has brought home so far (tracing letters, cutting lines) he has decorated with a drawing of a Transformer. Monster trucks are out. Transformers are IN. Until next week anyway.

Friday, August 14, 2009

A Video!!

Alexis went to the pediatrician yesterday for her 4 month check up and weighed in at exactly 10 pounds. I'd say we've come a long way from this little 5 and a half pound peanut I gave birth to. Dr. M. thinks that she looks great and was highly amused by how much she interacted with her by smiling and cooing. I love it when she puts on a good show! Dr. M was also very pleased that Lexi was on the growth chart in the 3rd percentile. There are "Down Syndrome growth charts" and then there are the typical growth charts. I think she's in the 25th percentile of the D/S growth chart and I was thrilled to know she even made it on the other growth chart. We go back to the pediatrician in 2 months.

I turned in my resignation to CICOA. I had heard rumors that there were going to be some changes in the job description and then early this week received an e-mail informing us of our new responsibilities. I had every intention of going back to work sometime after Alexis had totally recovered from her heart surgery. It's nice having a little extra cash coming in and the job was the most flexible in the world. Unfortunately, they gave us more responsibility, less flexibility, and not nearly enough pay for the extra work. I'm a bit bummed, but at the same time, I was still having a hard time picturing myself leaving Alexis for a full day at a time. I'm just very grateful that my husband has a job that allows me the opportunity to be home with my children.

Wednesday, August 12, 2009

Kindergarten







Today was Nicholas's first day of kindergarten. I survived. We walked to the bus stop at the Dyars house. I'm so glad their son Jackson also rides the bus. It's a familiar face for Nicholas. And we got to meet Jackson's brand new sister, Meredith. We had to introduce Alexis and Meredith, because they are now best friends, whether they want to be or not. Anyway, the bus came, Nicholas hopped right on, sat in the front seat (where he was instructed to sit because he's in kindergarten), and off he went. My eyes got a bit damp, but I held it together. Luckily I have 2 great distractions at all times.
The bus doesn't bring Nick home, so at 11:15 we pick him up. He came out with his teacher Miss Grey and had a huge smile on his face. He said it was fun, especially playing on the playground and can't wait to go back tomorrow. Thank You God!!! I can't help but remember his very difficult time adjusting to preschool. Boy has my kid grown up. I'm a very proud Mommy.

Saturday, August 8, 2009

Baby of Faith



I just returned home from my yearly Women of Faith conference. If you haven't attended one, you should. Unless you're a man. Men, stay home. It might be dangerous for you...like an arsonist surrounded by a bunch of firefighters.

This was my 3rd year attending the conference. Also in attendance were my mom, my aunt, sister-in-law and Alexis. And about 12,000 other women. I believe the Women of Faith series is the largest Christian women's conference in the country. There are several fabulous speakers, great singers, and a whole lotta love. Steven Curtis Chapman performed last night (my new line that I picked up from him this weekend regarding having 3 kids: "this is Eenie, Meenie, and Miney. There ain't no Mo!") and today we got to hear Mandisa sing. Remember her? From American Idol? She's fabulous--even better than in her Idol days. It was fun hearing her talk about her Idol experience. Lisa Whelchel was one of the speakers. She played Blair in The Facts of Life and spoke of her experience moving to LA, without her parents, at the tender age of 12! Can you even imagine?? Anyhoo, I always leave the conference feeling renewed, refreshed, and with next year's tickets already purchased.

Alexis was the perfect, content, and often sleeping baby. And she was a hit. It's amazing how everyone comments on her. People always ask how old she is and when they realize she isn't just a few days old, they then ask if she was a premie. There are a lot of questions I'm still trying to figure out how to answer. With strangers, when they ask if she's a premie, I sometimes say "no" and smile and walk on. Often this weekend, when people would look shocked by how small she was at 4 months of age, I would often respond with, "no, she isn't a premie. She just had some stuff going on and now we're playing catch up on her weight." They usually let it go at that. I can often be the type to offer up too much information, but I've tried to be better about this. (Do you like how I just wrote that comment on a blog that anyone in the world can access?)

Even my boys don't know yet that Alexis has Downs. They see nothing wrong with Alexis, wouldn't really understand anyway, and while it's not like it's a big secret, I don't see the point of sitting them down for a discussion on Alexis's diagnoses. They may wonder in the near future why people (i.e. First Steps) are coming into our house to work with Alexis and at that point I'm sure we'll talk a bit about how Alexis needs a little exercise because it may take her a little longer to learn to do things. But for now, they just know that Alexis is their baby sister and when you talk to her in a baby voice, she smiles at you. And you shouldn't stick Playmobile toys in her face.

Tuesday, August 4, 2009

School starts next week and I'm still waiting for my summer to start!



I had a nice trip to Elkhart with the kids for the weekend. We fit in one last trip before school starts. It was so nice getting together with my friend Amy who I had not seen since high school and then the next day getting together with my friend Megan who I hadn't seen since my wedding almost 10 years ago. Good ole facebook...it's amazing how many people I've reconnected with. Thanks Mom and Dad for watching the boys so I could see my friends! Brent and Elizabeth made an overnight trip to Chicago for Brent to run a half marathon, but we were still able to fit in a couple visits with them and the kids.

The kids and I came home yesterday because we had a lot going on today. Alexis had an appointment today with Dr. B, the pediatric surgeon who performed the duodenal atresia surgery when she was 2 days old. Today was just a follow up and they were very pleased with how great Alexis is doing. As with any abdominal surgery, there is always the risk of scarring which can cause a blockage in the bowel line. The risk never goes away but does decrease with age. So I know the signs to look for: distended stomach, excessive spit up, etc. But we don't need to return to see Dr. B. unless a concern arises. WOO HOO!! Cross one doctor off the list!

While Alexis and I were at the doctor, Jason took the boys to the dentist. According to Jason, the boys were great! Blake had impressions done and Nicholas had x-rays. Don't know why Blake had impressions (men don't ask enough questions!) but they are cavity free. Yeah!

And then this afternoon we had a meeting with First Steps to come up with goals and a plan for Alexis. They asked what goals I had for Alexis. I told them that as a very biased mother I already thought she was perfect and didn't need anything. But I realize that with Down Syndrome she is expected to have low muscle tone, so improved muscle tone would be my goal. The therapist then took over to make goals like "smoothly track objects 180 degrees" and "bring hands up to her midline". Whatever. Just give me a happy, healthy kid. But really, I am excited to have Alexis start working with First Steps. She will receive OT and PT every other week and the therapists ought to call in about 2 weeks to set up our first appointments. She will be reassessed every 6 months.

The boys will go to Kokomo tomorrow night and stay until this weekend. With school starting next week, we have to fit in any overnights now while we can. I can't believe I will have a kindergartener!! I don't look forward to putting my baby on the school bus for the first time. It could get ugly. Wonder if I could hide somewhere on the bus. Or if the driver would let me install a camera. Is 5 years old too young to give Nick a cell phone so he can call me if he needs me?

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.