Monday, December 28, 2009
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
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
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
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
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
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
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
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
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,
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
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
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
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
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
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
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
Saturday, September 26, 2009
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
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
Wednesday, September 23, 2009
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
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.
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.
Oh the relief.
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
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
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.
Friday, September 4, 2009
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
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
Wednesday, August 26, 2009
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
"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
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.
Monday, August 17, 2009
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
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
Saturday, August 8, 2009
Tuesday, August 4, 2009
Thursday, July 30, 2009
Tuesday, July 28, 2009
Gotta go back up my computer and put all my pictures on a flash drive.
Monday, July 27, 2009
Friday, July 24, 2009
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.