Thursday, May 21, 2015

Heard...

I see you, mama Joanna! ~ tiny P, from her crib. First thing in the morning.

You aren't crying! ~ the tech drawing tiny P's blood
No. I wewy brave. ~ tiny P
You are SO brave! How about your brother, is he brave, too? ~ the tech
No. He not. He cry a lot. ~ tiny P
No, I do not! I AM brave! Just not about things that are scary or things that hurt! ~ baby J. True words...



I am good at popping these bubbles! ~ little M, with some bubble wrap
I am good, too! ~ baby J
Yes, you are a popping boy! ~ little M
I wish I was a popping man...but I am just a boy. ~ baby J. Deep thoughts.

What are you doing with all of those papers, J? You should go put them away. ~ little M
I can't, M! I made them all for you, because I was missing you! ~ baby J
Hmm, that's a lot of pictures, you must have missed me a lot! ~ little M

How was school today? ~ me, to little M
It was good, and now I have a lot of stories, and a lot of questions to tell you! ~ little M. She did...



When I grow up, I am going to work hard, and I will have a lot of money, and I will put all my money in my truck, and go buy toys, and take them all to Children's hospital for all the kids. ~ baby J. Bless his sweet little heart.

What is that red thing on your knee? ~ me, to baby J
What? Oh, it's playdoh. ~ baby J
Oh, did you play with play doh in speech class today? ~ me
Nope. ~ baby J. ????

I am four, but on August 21 I will be five, and after that I will grow to be six, and then I will have giant teeth! ~ baby J, talking to the neighbors



Do people have meat? ~ baby J
Well, meat is made of muscle, so everyone has some meat, I guess. ~ little M
P, you are a little meat, and crocodiles loves to eat meat! ~ baby J
No, I not! No eat me, I yucky! ~ tiny P

What's your favorite animal, P? ~ the husband
Mr. cuddles! ~ tiny P. Mr. cuddles is a rabbit in a kid's show. Ha.



What do you know about llamas, M? ~ baby J
I know they have padded feet. ~ little M
Why? ~ baby J
Hmmm...I will have to use my big brain to think about that. ~ little M

Who are you talking to, J? ~ me, to baby J, on a play phone
I am talking to my boy daddy. ~ baby J

Hello, painter man! ~ baby J, to the painters at our house. It's too bad that boy is so shy...ha!


It's ok, J. Those are tiny little bugs, they won't hurt you. ~ me, to baby J, while he was freaking out over a bug outside...
Well, except some bugs might be small and poisonous... and those bugs can kill you. ~ little M. Not helpful.

Mama, where are you? Your babies are hungry! ~ little M

She is just so cute...couldn't you watch her all day? ~ little M, about tiny P


Good morning, mama... ~ tiny P, as soon as she wakes up in the morning.
Good morning, baby. ~ me
I haffa get up! My bottle all gone! I need rice! ~ tiny P. It's a lot first thing in the morning...

Oh, whop! ~ tiny P. Whop, instead of whoops. I love it.



She's laughing because I am so funny. I don't even have to try hard, and I'm hilarious. ~ little M

YAY!!!! That's so exciting, this is the best day! ~ little M, after I gave her a bag of jelly bellies.

Why do you think the mom and dad were so sad when they didn't know where Rapunzel was? ~ little M, after watching Tangled.
Well, how would we feel if someone took P? We would miss her! ~ the husband
Oh. Yes, I would fill the house up with tears, because I love her so much. ~ little M. Bless.


Bunga, bunga! ~ baby J, instead of cowabunga

I am giving you this flower because I love you! And you love me too! ~ baby J

We can't kiss people on the lips, J. Not until you grow up and get married. ~ little M
When I get big, I am going to marry a lot of girls, and I am going to kiss all their faces all the time! ~ baby J
Ugh. Not me, I am not getting married, I don't want anyone kissing my perfect, precious lips, and getting their germs on me. ~ little M. She might be taking this germ thing too far... and also, baby J might be heading for a life of polygamy.




Wednesday, May 20, 2015

Wordless Wednesday...My Heart Heroes













Tuesday, May 19, 2015

Tiny P's Tiny Parts...

Our tiny P has seen a slew of doctors lately, and still has so many more to see...

She has been to the liver specialist several times, and gotten lab work done for them more times than I can count. She has also learned how to pee in a cup. I am, in a strange sort of way, extremely proud of this.


In fact, tiny P has gotten so much lab work done lately, that she has excepted this as part of her weekly routine. The girl who used to scream herself blue, now doesn't cry at all, and even "helps to find a good vein. It's easier for me, sure, but it is also SO sad. My baby has accepted that crying doesn't do her any good for these owies, because no one saves her, and so she has given up on crying and fighting.
This past week when we were at the hospital getting lab work, the tech (who has done tiny P's blood work many times, and remembers the screaming girl) commented with surprise that she wasn't crying at all, and tiny P said "no, I just very brave." She counted the vials of blood (5!) being drawn, and after  the tech was done she said "I think that's all the blood we can get out of that vein," and tiny P lifted her other arm, and pointed to a vein, and said "oh, how about this one?" Bless it. I just can't even stand how cute and sad it is.


The GI doctors (liver specialist) are very concerned with tiny P's tiny liver, and we have not gotten very good news regarding that. We will find out soon what the latest blood work showed after she was started on several new meds, but they feel like her liver is so shot that she needs a new one. This might normally be fairly straightforward, getting a liver transplant, in the scheme of the whole transplant world, if her little heart were not in such bad shape. But her little heart likely won't sustain a new liver...

So what to do? No one seems to know, but there will be much discussion of options in the weeks to come. Our original hope was for tiny P to have the Fontan surgery, but the Fontan is hard on a person's liver, and tiny P's liver is already shot.


We also saw her cardiologist this past week, just for a checkup to follow up after her last hospitalization. We had another appointment scheduled with him for the first week of June to then schedule her next heart catheterization at the end of June, but he decided to cancel that appointment, and go ahead and schedule that heart cath, so tiny P will go in on the 11th of June for her next heart cath, and they are discussing whether or not they should do a liver biopsy at the same time, or schedule that separately. I am just relieved to have a cath date, and to see what they find out, and make a plan for our girl.


Thank you for keeping our baby girl in your thoughts and prayers! We still have to visit the geneticist this week, and then see the kidney specialist at the end of June...hopefully there might be just one bit of good news in there somewhere for our girl!

Sunday, May 17, 2015

Sunday...

Sometimes superheroes reside in the hearts of small children, fighting incredibly big battles...





Friday, May 15, 2015

Friday Phone Dump...

This boy had a couple late nights last week... so he crawled right into our bed after he got up.


She thrilled to be at the liver specialist. Just thrilled.


I can just hardly even stand this cuteness...all my babies in the backseat, and my biggest baby reading to my little babies.


This one has been falling asleep a lot. It seems like she only does that before we end up in the hospital, so of course I have been concerned.


 A little nap before lunch...again, concerning, but how cute?


Baby J has hit a bit of a growth spurt lately, and is becoming more boy than baby...


She's so proud that she can cross her arms...


The husband reading to the babies...



Time out...


And mad about it. Also, taking a picture of it doesn't help. Ha.


Mad about getting blood drawn...

Clearly she has done this too many times, because it has become commonplace, and she doesn't even cry any more.


It cracks me up when I find little M's drawings and writing like this...


The corner says "created by...the heart warrior. ADORBS!


Dear mommy, I love you so much. You make my heart twinkle.
So precious.


Monday, May 11, 2015

Monday Musings...

We closed on our new house a week and a half ago, so we are in the throws of packing and all the craziness that comes with it. Moving is already crazy town...moving with three kids, one with high medical needs, while attending all the specialist appointments that go with those needs, is just plain insanity.

These guys are rock stars, though... even with all of the insanity, and craziness, they have managed to keep it together, and we have managed to get a ton of stuff done!


Little M had her first drop off birthday party a couple weeks ago... I felt like such a grown up mom, dropping a kid off at her little friend's house for a couple of hours. It was such a strange feeling...
This girl, who had panic attacks and took days to recover if she couldn't find me in our house, just four short years ago, just walked off into her little friend's party so confidently, without looking back... I just am so proud of how much she has grown and changed.



Tiny P has been doing fairly well since her last hospital stay, but she is on several new meds that have some harsh side effects that make her feel miserable. She has quite a few specialist appointments in the coming weeks leading up to her next cardiologist visit where we will schedule her next heart catheterization. I'm working on a post just about tiny P, but we are still processing some things.

Tiny P is now on nine different meds, four that she takes twice a day... she is on three diuretics twice a day, and that is all that needs to be said about that. After she added her newest three days, she didn't smile for three days. She was miserable, and nauseous, and dizzy. Now she seems to be adjusting a little, and the past couple of days we have seen her smile...we missed it!



Baby J does not do well with change. At all. His little world had been rocked non-stop this past year, with starting preschool, adding a new sister, lots of hospital stays for his new sister, and now a new house... I think we might be breaking him. He is a hot, hot mess, and he is losing his mind. I am so looking forward to getting settled, and getting him some help, and some routine back in his little life.



Little M has become quite the little adult. She seems so grown up to me lately. She is still SO full of sass, but there is also a confident and responsible little person blooming there. While we have been working on painting our new house, and getting things ready to move in, she will often appear in the doorway, and ask "how is everything going Do you need any help here?" And if we say no, she will always say "ok, just call me if you need help, ok?" She never complains about anything I ask her to do, and is always happy to help. She plays so patiently with baby J and tiny P,  and they adore her. Their favorite time of day is when little M comes home from school... It's mine too, because I miss that little girl so much during the day!