New glasses for our girls!

Well, the girls got their new glasses! I hadn't realized just how small Maci's glasses had gotten until they pointed out that she was frequently look OVER them instead of through them! She has really grown in the past year, she is turning into quite the young lady, we are so proud of how she has done working hard at homeschooling this year. Please excuse that her hair is in pretty dire need of a trim, Mommy just hasn't had many days off lately that I can make an appt and then actually take her to get it cut! Poor Addy was stuck with the plastic version for glasses, hopefully her head will grow quickly and we can go for something less bulky! I think she looks pretty adorable too, so far just for day 1 she doesn't seem to be falling and running into as much as usual. As a side note, I realized today that none of my posts ever seem to have pictures of Hunter in them- it's not on purpose, it's just that the girls are home with us all day while he's in school, but he's due for new glasses too so stay tuned ;)

Our sweet girls, best buds!

They really need better baby glasses selections!

She still manages for them to slide down her nose, lol

 I thought I'd update on how Addy did after her big girl bed transition. She has done great! She was right where I left her when I went in the next morning, so proud for sleeping in her big girl bed all night!

 My mom thinks perhaps we kept her in her crib so long we just pretty much created a routine of that she stays in bed in the morning and at a night until we get her out. She goes right to sleep at night and so far has stayed in her bed in the mornings when she gets up. The second night, I carried her in there, just like always. Then my two year old just stabbed me right in the heart with her declaration of "LET ME GET IN MY BIG GIRL BED MYSELF!" I have to say, that time I almost cried. So the routine has been altered a little but now this girl runs and jumps in her bed all by herself when we say goodnight.

A BIG GIRL BED MILESTONE....SUCCESS!

OK, so I know it's only been mere days since I posted last, but Addy reached a milestone tonight that I just had to write about, probably because I've really been dreading it! Yes, Addy will be 3 in August, and we still had her in a regular crib. She has had full capabilities to climb out whenever she wanted to for no less than a year, but this appeared to be the one thing in life that she actually did seem to conform to the rules without any questions. It was really difficult to accept that it was finally time to give up the one thing that we could still count on to keep her contained for a few sweet minutes when we needed to! However, it was getting a little silly to keep lifting her into bed each night, especially when she could almost climb IN herself! So while Mommy was at school today, Daddy and Addy made some minor adjustments to her bed....

She was so proud sitting in her newly transformed "big girl bed"! Nobody needs to comment on the side rails that look like they have been eaten by a woodchuck either....yea, so we're the dumb parents who didn't realize they actually sell plastic covers to go over those rails so when you're 1 year old is teething they don't actually bite wood!

 So we finished our before bed routine and I was getting ready to put her to bed like always but before I knew it she had run at warp speed and jumped into her bed like she has been doing it for years! I have to admit it made made me a little bit sad as I realized that an era is over. I have always carried Addy to bed cradled in my right arm since she was a tiny baby. Granted, she used to take up one elbow and now I have to hold her legs with my other arm....but still, since she was 3 months old, bedtime was always the only time she let me carry her like that (usually she's sitting up straight on my hip).  But this was our mommy-Addy time when we shared a few last jokes, "piggy kisses" (don't ask), promises of tomorrow, and loving moments before bed. With my school over the past year, some days this is just about all the time I get with her. Usually Grandma or Heath tries to keep her up so I can have a few moments, and then we go through our routine. I guess we'll have to come up with a new way to have our moments, I'm pretty sure my butt won't fit in that toddler bed with her, lol. As I got her all tucked in tonight, she was grinning
like I've never seen. She was so proud of herself and her new "big girl bed" that she was going to sleep in. We talked about how important it was to stay in her bed just like her animal friends stay in their sleeping places until Mommy gets her up in the morning. I locked her bathroom door just, blocked her closet doors, and put away all potential falling hazards--- just in case. She kept agreeing "yep", "stay in my big girl bed", "goin to church when we get up" ...although I wasn't convinced.




  


That's about the time that Mommy realized that there is a half of a rail on one side of the bed for a reason....and I should probably put her head at that end so she doesn't fall out...."D'Oh!" As I LOL'd at myself, I then had to tell her that big girls have to sleep at the other end with the rail so they don't fall out. I expected a fight, as Addy is very routine oriented and we are already pushing it...but she surprised me again and flipped right around on her newly positioned pillow, never missing a second! She squeezed her eyes shut in anticipation of her first night as a big girl sleeper. I'm not sure if she really believes that she sleeps like that or not but it sure is adorable, lol. 

 And then, UP went the blanket, ON went the Dora nightlight & Stinky Dare (that lump of a bear in her arm that still plays music)...she squeezes her eyes shut again while peeking out to see if I'm still there as I whisper "nite nite, I love you"
 
*Sigh* She really is growing up, she's not a baby anymore...does this mean she really is a little girl now? Is this about the time that people start getting baby fever again?  Let me make it clear that's definitely not happening right now, but I could hypothetically understand!


All tucked in, I turn off the lights, close the door, turn on our iBaby monitor that allows us to spy on her.....and wait......

......and then, my child disproved every fear that I had of transitioning her to a toddler bed by going straight to sleep! She sat up about 2 times and then quickly laid back down, and was asleep within 10 minutes. I do believe that I have witnessed some sort of spiritual event tonight. God told us we have to trust in him for his will to be done, and he rewarded us! I consider this nothing short of a miracle! As I reflect on our achieved milestone tonight, I am amazed at how far we have come in the last 3 years. I truly believe that we were given Addy for a very special reason, and that she has great things in her future. Today while we were shopping for a friend's baby gift I remarked that Addy had tons of baby blankets for gifts-  at our request, because we didn't really know if we would bring her home from the hospital- but I knew we would need them for our anticipated extended stay after she was born. It really is just a fact that we had to deal with before her birth. We knew the statistics better than anyone, but by golly she was going to have all of her cute blankets and button up outfits while we were getting through that toughest battle of the Norwood. It brings back memories of how distraught and stressed we were. No longer do we have that immense fear that was almost crippling. I have accepted that I will always have that nagging fear in the back of my mind of what tomorrow could bring, but I no longer WORRY and have ANXIETY about it. We tackle each obstacle as it is handed to us and her, and will take it one day at a time. I think that is part of why I have always cherished our before bed routine, because we never know what tomorrow will bring and I always want my last moments of the night with her to be good so that if it's her last, I will always remember her smile and big blue eyes. I realize now that fearing what is most certainly the most awesome existence we can imagine- an eternal life with our Lord, free of the pain of this world, is not necessary. Thy kingdom come, Thy will be done in earth, as it is in Heaven....


So with that I say good night. Stay tuned for how nap time goes the next few days, it hasn't been stellar even before this so I joyously await the future (rather than anxiously!)  And now I just have to awake in the morning before she does.....

A GOOD UPDATE!

I really have to hand it to those moms that manage to blog every day, or at least once or more weekly. I think at least several times a week that I need to write....but then a million other things in life happen and before I know it another month has passed me by! I guess with all I have going on that should be excusable but I still really want to find some way to prioritize some time to make more regular postings, for all 15 of my readers ;) That is, after mommy & Addy do our special time before bed after I've been gone all day at work, clinicals, or school!

I'm really not a fan of selfies, but Addy recently learned how to make "fishy pouts" and "kissy lips" and she thinks it's super fun to do with mommy and take pictures together!

Grandma has always been convinced that Addy was going to have curly hair! Her hair was actually really curly that night but the pics really don't show, I think Grandma might just be right! Love this girl!








So anyway, we had our cardiology followup for Addy today. We actually were due back at the end of March but due to Heath's job change we had to wait for his new insurance to take effect. God watched over us and didn't require Addy or any of our children to require medical care during that time so for that we were blessed. We have noticed over the last month or so Addy has had more cyanotic moments than before and her oxygen saturation has been 91% instead of the 94-96% it was before. Also, even though Addy's heart rate has always been a little higher than most single ventricle kiddos I know, her HR is still 140-160 most of the time, which is a little high to live life at since she is almost 3. Jeez, it's hard to even accept that she's almost 3.... it seems like just yesterday we were starting this helluva journey. I sat in class today listening to a lecture about Pediatric Palliative Care and found it very difficult to concentrate as I thought about how much it pertained to Addy and complex congenital heart defects. I'll actually take this as an opportunity for education that Palliative care really is there to provide an extra layer of support for patients and families that are experiencing any life threatening, serious, or difficult diagnosis or illness. Their goals are to improve comfort, support, assist with pain management, and help make sure the needs and wants of the patient and family are heard. These great ladies really get a bad reputation because people hear the words "palliative care" and it has a tendancy to become a hostile or awkward situation that they are here to say your child is dying or that they want to make them a DNR or limited code. This does not necessarily mean "end of life" or "hospice" (hospice typically anticipates death within 6 months), although they may certainly be included in these stages. Our program at VCH unfortunately lost a great MD recently that headed up our Palliative care program so the remaining NP and social worker now they are primarily focused in Heme/Onc and perinatal patients simply because of the volume of patients is simply all 2 people can handle . Other hospitals around the country are making in common practice to consult them as soon as a serious CHD diagnosis is made and they follow the patient throughout their entire life, every admission, surgery, and event. I never really thought about it but in hearing this lecture it reminded me of several times over the last 3 years we have encountered issues with pain management and communication of the team that had palliative care been involved, I believe could have been handled much better with more satisfaction from us and better care from Addy...and this is coming from the two PICU educated parents who sometimes have more knowledge than the caregivers and whose words are probably heard a little more often than most parents that aren't PICU nurses. So then I wonder, how much better could we provide care if we made this our standard practice for all of our complex CHD families, to have an advocate and someone that has seen us and our child every step of the way. I guess it just reminded me that our experiences with Addy as a heart parent really have changed how Heath and I nurse and act as providers.


So I kind of got off subject but back to Addy's appointment.....it went great! I think she forgot the whole cardiology visit routine so there were a few tears when she had to lay down for the echo and EKG but once she did and nothing painful came afterwards she was a trooper! Her echo looked wonderful with the best function she could possibly have, no leaky valves, and no clots or narrowing anywhere. We cut her lasix in half again since Addy has been "water hungry" again lately, and we are stopping it in a month. Hopefully we are out of the clearing for pleural effusions by this time! Addy is also wearing a holter monitor for the next 24 hours just to check her tachycardia (high HR) and make sure she isn't having any arrhythmias that could be causing the blue spells or high HR....and it will put mommy & daddy's concerns to rest. She was a trooper and by the end she was chatting with everyone just like always. And the best news was...WE DON'T HAVE TO GO BACK TO CARDIOLOGY FOR 1 YEAR! When we finished in the clinic we went up and visited a few of our favorite nurses, doctors, and nurse practitioners on 7A, the cardiology floor. The men and women that work there really pour a lot of themselves into those patients, so they are always very happy to see happy, healthy, growing patients that don't hate them anymore! We are so thankful for the amazing people that we are honored to work with and have take care of our child.

OK, let's get this over with!

You want me to do what? Nope, I'll sit, thank you.

Checking out my heart pictures, don't go far Mom!

 

Look left...look left...OK, look at the phone to the left!       

All done, let's wipe this goo off!

I think I prob'ly need to eat after all that!

It looks like it's finally going to stay warm enough to plant a garden! Heath had some big helpers to plant the vegetables. For the first time in my life I saw Addy NOT want to get dirty, and Maci getting down and dirty with gardening and not mind a bit to be hot and dirty- I was so proud of her!

Maci helping Dad, Addy carefully supervising

Dad, you planting?...Dad, you planting?...Dad, I plant too?....

I'll just move the plants around instead of planting!

The only other news that we have is that Addy is going to need glasses! I have speculated for quite awhile that Addy couldn't see, but my suspicions are validated! Maci is already in glasses but has binocular and convergence problems so she will be starting vision therapy soon to help her with helping to strengthen her eye muscles and hopefully make school much less physically exhausting. Addy apparently has some acuity and depth perception problems so she will also need glasses. This explains why Addy can climb the cabinets like a monkey but she spontaneously falls no less than 20 times a

Those baby doll glasses don't fit me!

Scuba Steve to the rescue!

day and trips over her own feet all the time! It just wasn't logical to me that she can do the splits, headstands, and tumble better than most 5 year olds, but her feet are always banged up from her falls. It's been almost 3 weeks and they still aren't in...I'm going crazy waiting! It's sad that our little hobbit had to wear the "newborn" size! I considered the less bulky metal framed ones but decided they would only last about 5 minutes with Addy. So we're going
with the plastic rimmed indestructible ones for now and maybe in 6 months or a year we'll reconsider, maybe by then her head will be a little bigger! We tried every pair on that they had and finally found a style that mostly fit, just had to order them in pink. As you can tell, Addy had a bit of a thing for glasses before so hopefully she'll be more than happy to wear them all the time, lol!

Hmm, cute but still a little bit big!

Noooo, still too big mommy!

We have a winner, in pink please!

 That's all for now, I apologize for the oddly placed pictures, I have the hardest times getting my pictures to post in the right place!