Saturday, May 28, 2016

Getting to Know Heidi Anne

Heidi Anne's teacher had the students answer questions about themselves for the last day of school. Here are the questions and her answers. It will be fun to look back on this years down the road. I did correct her spelling, just a side note.

My favorite subject: Math
My favorite animal: Chipmunk
My favorite special: Gym  (Specials are gym, music, art, and science.)
My favorite food: Pizza
My favorite color: Red & Blue
My favorite show: The Simpsons 
My favorite sport: Soccer 
My favorite book: Magic Tree House books
My favorite field trip: Dinosaur Park in Ogden
My favorite school event: Enrichments (The after school program, she was in the arts & crafts group)
My best friends were: Trinity & Serenity
Second Grade in 1 word: Crying  (How sad is that one?)
Important thing I learned: How to be nice even when people are mean to you. (Sadness again)
What I am doing this summer: Swimming lessons, swimming, maybe move
What I want to be when I grow up: FBI Agent!!

Thursday, May 26, 2016

He Can Walk and Other Thoughts

I guess I thought once Anastasia was released from the hospital that would be the end of the NICU Journey. That was niavie of me. One is not born 3 months early and have no side effects. Some we know about (like her small size, special caloric needs, and severe acid reflex). Others the severity is still unknown (like the ROP, the need of oxygen, heart murmurs, and Respiratory Distress Syndrome). Then there are a host of side effects and disorders that she may or may not have but needs to be monitored for, for example speech delays, movement delays, vision issues, just plain being behind her peers, or things like ADHD. Luckily, we're learning with Heidi Anne how to deal with child with ADHD.   
I guess I was in denial, I honestly thought for the longest time once she's home everything would go back to normal. I didn't plan on all these doctor appointments that are very far away, medications and having 2 different bottles each feeding. 
Today Rory was walking so much! Like it just clicked. He finally went "Hey, I like walking!!". He had a smile on his face and would walk back and forth across the room. However, if we praised him, he would sit down or pause and clap. We would just whisper to each other "Look at Rory, he's doing great!". Furthermore, when he steps on a different texture other than carpet, he will slowly get down onto his hands and knees and start crawling again. 

We've been doing spring cleaning these last few weeks (that's been taking up all my spare time). We're trying to minimize our things as much as possible since the next place we're going to live in will be either a townhouse or apartment. We haven't really de-cluttered in nearly 10 years of marriage. It was hard at first but once I realized we hadn't used some of these things in years and the thought of moving it (again) made donating the items much easier.  I'm talking at least 3 carloads of donations and a trailer full to the dump. We just have the kitchen left to go through. I think that's Saturday's project. 
I haven't really talked about it but this has been the hardest school year for Heidi Anne. The school work is easy, but she's been picked on and teased relentlessly. She says she loves school, which she's doing great academic wise, but dislikes the people part of it. Every morning she begs to stay home. She suffers from headaches, stomach aches and has become depressed. For example, someone at school kept teasing her until she shoved him (which was wrong of her). She lost the privilege of pool party day. Later that same day, the same boy PUNCHED her. He just got a talking to. These bullies are just getting smarter. The school says they crack down on bullies but it sure doesn't seem like it. If we're unable to move this summer we're seriously considering homeschooling her next school year. 

The babies have developed nicknames. Anastasia is; Lady, Ladybug and Stacy. Rory is our little Tiger. Heidi Anne wants to be called Chipmunk, not sure why on that one. 

Friday, May 20, 2016

Scary Mommy Moments....

Anastasia's growth this week: 

Weight: 6 pounds 9 ounces!! (Was 5 pounds 15 ounces)
Length: 46 Centimeters  
(Was 45.75)
Age: 13 weeks old 
(Should be 1 week old)

I don't have everything nicely broken down into days. They just blurred together this week. Yeah, it's been one of those weeks. 

I had some scary mommy moments this week. I went to the restroom and when I came back Rory was chewing on a mini flashlight. I realized it was in pieces and the tiny battery was missing. (You know the button batteries that can burn tissue). I got him ready and woke up Char to tell him I was taking Rory to the ER and why. Char sleepily told me that the flashlight had broken in the wash and Rory must have gotten into the laundry and found it. It made me realize how quickly he can get into things and these accidents can happen to anyone. I used to judge those moms that said "I was only gone for a minute." Not anymore, because I didn't think there were any items that could harm him in the 1-2 minutes I was gone. When it comes to toddlers anything is possible. 
The next scary mommy moment was when Anastasia started having retractions which means her respiratory distress is worsening. They were mild but she needs to see a good doctor. (E,I one down in Ogden or Salt Lake). I increased her oxygen and switched her cannula. She didn't have nasal flares or abnormal grunting otherwise I would have taken her to the local ER (who would have sent us to Ogden). Besides, Char was working and I didn't have someone to watch the other kids. Kind of hard to find a sitter at 10:30 pm on a school night. 
The last one was after Anastasia's eye appointment, I had gotten up at 4:00 am got ready, got her ready and headed down to Ogden. She still has ROP but the Plus Disease has slowed down greatly. He put the eye surgery set for July on hold for now, which is good news. (Appearently, she had eye surgery scheduled and they forgot to mention it to me.) But I know about it now. I asked the doctor what and how far she can see. He replied "Less then a newborn. Her vision is around 3-6 inches up close, any further then that it's just colors and vague shapes."

We did some drive thru errands while down there (since we can't go inside), then headed home. On the way back home I nodded off (again). I awoke, heading for the road barriers, meanwhile a semi-truck was honking loudly trying to warn or wake me up. I sadly struck one of the barriers and made a little mark on the car. But we were safe. 
These early morning appointments are killing me. We're praying that the home rents or sells soon. 

Rory has been teething this week. Poor guy. But in other news we've caught him walking more and more each passing day. It's come to a point the only times he is still is when he's sleeping or in his high chair eating. One of his favorite foods are raviolis and pieces of bread. Whenever I feed him bits of bread it makes me think of feeding a baby duck. 
Rory's Footprint at birth versus Anastasia's          Hand print at birth compared to a quarter!! 

Saturday, May 14, 2016

A Teething Toddler + A Preemie With Thrush = A "FUN" Week

Anastasia's growth this week: 

Weight: 2680 Grams!! (Was 2356Grams)
Length: 45.75 Centimeters  
(Was 45)
Age: 12 weeks old 
(Should be 40 weeks gestation)

Public Service Announcement
This helps explain why I've been giving Anastasia Sonia Rose's age in two different ways. More often then not this helps to remind me why my 3 month old hasn't cracked a smile or isn't able to control her head. Yes, she is 3 months old, but she should be a newborn. She could catch up or be 3 months behind everything until she's roughly 2 years old. It's also nice to know that other preemie moms face a similar struggles and that I'm not alone. 

Mother's Day Weekend

We celebrated Mother's Day as a family on Saturday since Char will be sleeping / working on Sunday. I've been craving a chicken leg quarter smothered in BBQ sauce actually seared on a charcoal BBQ, complete with those charred sections. Some may call that slightly burnt, I call it tasty. (Bet you want some now....) Char bought a cheap charcoal grill and we had our first BBQ at our house in nearly 3 years! Then it rained. So we had to move everything from the grill to the oven to finish cooking. But at least it had those charred markings I wanted so badly. 

Sunday was a gloomy, rainy day. Not at all spring like or even a hint of sunshine. I remember when Heidi Anne was younger we would go to the park and have the first family picnic of the year on Mother's Day. Maybe we'll start that tradition back up next year, (weather permitting). Today was just a normal Sunday, Char slept and then went to work. I did get 2 out of 3 kids bathed today so success!! I was going to attend church today when the children have been working on a special program but by the time I got the kids ready church had started 20 minutes earlier. I wasn't even ready. Sadly, we skipped it all together.
But I did get the kids ready at least. Getting closer. Give me a few more months and I might have this down. 
Some days I feel like I rock this motherhood thing. Other days I feel like I'm just faking it, and I pray the kids don't catch on to the fact that I have no clue what I'm doing. Right now I'm in survival mode which means I'm not getting much sleep, I have a sick child and basically I'm doing this solo due to Char's work schedule. (Thus, my standards are low).

My three objectives are:

1. Are the kids dressed? ---Yes
2. Are the kids fed? ----------Yes
3. Is the house on fire? -----NO

If the answers above matches then that was a pretty good day. Anything beyond that is a bonus. For example; kitchen clean, bathroom spotless, any vacuuming, laundry. ect. I'm not depressed, I'm just trying to make it through the day / until I can sleep again. Think of it as finials week. You devote yourself entirely to school that everything else falls by the wayside. You're stressed not depressed. That's me right now, only I don't know when finals will end. I'm guessing survival mode will come off in about 6 months (barring any unforeseen situations).  

I'm sleepy but I like writing, it de-stresses me and helps to put the day into perspective. Most of what I write never makes it to the blog. I write and then erase things. Somehow just the act of writing about whatever the subject or issue is helps me focus on a plan of action.

Right now I'm feeling a little down, (I currently HATE checking the mail because I know there are bills in there). Anastasia has doctor appointments at least 1-2 times a week down in Utah which turn into full day excursions due to the distance. I GROSSLY underestimated her special medical needs. 
I don't know what the right course of action is. Part of me wants to just move back to Utah downsize and get an apartment. Then we would be closer to Chars family (Heaven knows I could use all the extra help I can get), Char's work is there (which he likes more) and ALL of Anastasia's doctors. Char could go full time at his part time job and pay down these medical bills that we're drowning in (plus the student loans as well).

Odd, normally this is where some answer suddenly comes to me. I've got nothing. Just more confusion and inner conflict. Time to phone a friend.

I talked with our landlord, if we can find someone to buy the house or sublease we can move. They're such understanding and kind people. Just pray we find someone soon, I have 3 doctor appointments this week alone! Anyone need a place to rent or knows of someone looking to rent??

It's 4:40 am on Wednesday and I can't sleep. So you get the pleasure of my company. I'll tell you about my day. It was long, stressful, and heart breaking.

It started off at 6:00 am with Heidi Anne having cold like symptoms but she didn't have a fever so it could just as easily be allergies. We packed up the babies for a doctors appointment down in, you guessed it, Ogden.

One of the saddest things we did was take a stray cat that adopted us to the animal shelter. NOT the one here in Wyoming but down in Ogden. It was a miserable car ride, the poor thing knew something was up and had the most pitiful meow. But we can't take the kitty with us when we move and we don't know how the new people with react to a stray. It was a hefty price but it's a no kill shelter and we promised Heidi Anne we wouldn't let Sweetie the cat be put to sleep. It was a bit heart breaking because we've all become attached to the kitty.

We then went apartment browsing. We went to 7 places with a toddler and a baby with special needs. I wouldn't recommend ever doing that. It was weird how people would stare at the O2 tank poking out of the hiking backpack or when they asked if they could see the baby we responded with a firm NO. Eventually, one of us would stay in the car with the babies while the other went to talk to the people inside. It just made life easier.

Soon it was time for Anastasia's doctor appointment. Since she doesn't have much of an immune system we were taken back to a clean room right away (no waiting room for us)  Both babies where super hungry, tired, and cranky by then. We changed them and feed them bottles while we waited for the doctor. We got her weight (5 pounds and 15 ounces) and her length (18 inches on the dot). Unfourtantly, she is suffering from thrush, which is a yeast infection in your mouth, cheecks, throat. Which is as painful as strep throat.  

The Rest of the Week
We've been deep cleaning, packing and taking care of a teething toddler, a medically fragile preemie with thrush, and a sick 7 year old. This has been a hard week!!

Anastasia can only drink 40 mls at a time before she quits from the pain. Then she's hungry roughly 70 minutes later. I've been living off 30 minute naps. While trying to care for the other two and keep up the house. I pray this doesn't last long or ends before I crash. Why am I writing when I should be sleeping? This is a bit therapeutic, I guess.

I took Anastasia to the eye doctor on Thursday morning. She still has ROP but he couldn't find the Plus Disease, he was very perplexed. He can't believe it, thus we have another appointment on Tuesday morning. This super early morning appointments are killer.

Anastasia is in so much pain, she won't eat much, and it's causing me concern. I tried to get her a doctor appointment but the only one open was in 30 minutes. No way we could make that. I just dealt with 2 very cranky babies and didn't get much done today. I need to clean!
Better go while, by some miracle, are both asleep.

Saturday, May 7, 2016

Survival Mode: ON

Anastasia's growth this week: 

Weight: 2356 Grams!! (Was 2322Grams)
Length: 45 Centimeters  
(Was 44.5)
Age: 11 weeks old 
(Should be 39 weeks gestation)

The Weekend
Sorry, this weekend kind of blurred together. (I have a feeling that will happen over the next few months). Char went to the store alone because we can't take Anastasia out in public for 3 months minimum (except for doctors appointments). Which translates to no church, errands, or gatherings for Anastasia and me. We're basically under house arrest. But visitors are more then welcome to come by. I could use human contact. Just ignore the messy house.  
I'm so sleep deprived basic tasks are hard to do. Last night I only got an hours sleep at a time, then was up for nearly an hour. I can't think far enough ahead to dinner. I'm trying to learn (quickly) but apart from doctor appointments, I can't think to far into the future. I guess every post NICU mom is like this, living in survival mode. I know it won't be like this for long, I just have to make it through this. 

There was a Monday?!?

Today was crazy! It started with three hours of sleep the night before. Then I got up at 4:45 for a doctor appointment at 7:00 am. So I get Anastasia ready (but couldn't feed her), pack up the "small" O2 tank, monitor, and diaper bag stuff into an old hiking bag of Char's. Then the two of us headed out at around 5:15 am.

I'll skip the drive (side note almost hit a bunny) and pick up at the hospital. We check into the NICU and Anastasia got a dose of medication to help dilate her pupils. I needed to get her blood work done which should have taken 10 minutes turned into a 70 minute wild goose chase. The whole time, NICU nurses are checking to see if her eyes need more medication (which they did). Finally, we got the blood work done. 

I meet with Anastasia's dietitian real quick while I waited for the neonatal ophthalmologist (premature baby eye doctor). Apparently, Anastasia isn't growing like she should be. In fact she's stalled a little. The plan is to feed her 2 ounces every 4 hours. This will be pushing it, but she needs to gain weight. 

Then we had the eye doctor come in and examine her. Even though Anastasia was strapped in her car seat she still put up a fight when it came time for the doctor to look at her dilated eyes with the bright light. It took 2 nurses to help him out. Sadly, she has ROP still with Plus Disease added as well. The way the doctor explained Plus Disease to me like this: Imagine a stick of Pull Apart Twizzlers, they are plied on top of each other and intertwine. Now imagine that is happening to the blood vessels around her eyes. We're watching it for now, but it could take laser surgery. 

By this point Anastasia had let her hunger and general frustration be well known. But the eye drops can make infants dizzy so she couldn't eat for at least 30 minutes. I was given a choice of waiting in the nice, quite, dim room then feeding Anastasia or take my chances on the road. I picked option 1. Once she could eat, she sucked down the food quickly. I knew I had made the right choice.  

I drove home where after school I took Heidi Anne for swimming assessments. Then we went to the store to try to find preemie diapers. Found lots of other things but not those tiny diapers.I guess Char will have to try Smith's tomorrow.  

I've never had a baby who loves to be swaddled. With Anastasia the tighter the better she sleeps or relaxes. Char is great at wrapping her. I say her wraps her like a sushi roll. Nice, tight, and everything stays in. See? All cozy, even after 4 hours of sleep. 
Compare it to how it looks like when I swaddle her. It looks like a sloppy taco. Everything is out, in fact she's barely covered. Anastasia can wiggle loose. Everything is falling out. It'll take some more practice I know. I just hope I get it down before she hates being swaddled. (Which is what I bet will happen). 
Here is a picture of Rory. He's sad because he ran out of waffles. I thought it looked sweet. He has an expression of "Where did it all go?". Don't worry he got another waffle. 
Today Char's sister Emily came to visit. She brought dinner with her as well (yeah no sandwiches tonight, we're living off sandwiches right now.) She's super busy with work and 2 little ones of her own. At family gatherings she's in high demand. It was nice to get some one on one time with her. After dinner she held tiny Anastasia for a bit then got rare Rory cuddles afterwards. (I think Rory was jealous of the special attention Anastasia got from Aunt Emily). 
It was nice to have a visitor. We can't take Anastasia out to any crowded areas (a crowd is 8 or more people), which means no church, family gatherings, or simple errands. So visitors are more than welcomed or you could text or chat me on Facebook. It gets a little lonesome sometimes. 

Did I mention we got a concentrator? A concentrator takes the surrounding air, concentrates the oxygen, and pushes it through the tubing. This is safer and more portable then regular O2 tanks.  

It makes her easier to move but I'm still tied down by wires. Tonight she made a field trip to the living room without having to haul an O2 tank with us. It'll be nice when she's wire free and I can do things like cook and clean or hold her while tending to Rory. It's hard having your youngest being so ill, I bet it would be hard no matter which child is sick.