Pages

Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Thursday, July 30, 2015

Happy May May news

It's here FINALLY!!! The first day of school. Long awaited and so welcome for this momma. I am ready for the structure and age appropriate activities for Gator and letting the little girls play together. Ryleigh loves school and is always thrilled to go. Bless her for making it easy on me. As long as she has her new clothes and her perfect gear she feels ready, taken care of, loved and excited. I just can't believe she is in fifth grade. One more year until my life changes forever.. I will have a built in babysitter. And I pay really great! You need a new outfit? Awesome, daddy and I wanna go on a date, you want to go to the movies with your friends? Awesome, I wanna go on a ride. (one year *sigh*) 
Could we have found a more perfect backpack?? Turk-boys (turquoise) with Eiffel Towers, macaroons, and Vespas. 
 And Gator is seriously rocking his new kicks. They do make him run fast and jump high. Just in case anyone wanted to know. He tried them out, so I am aware of these features. 
Oh yeah!
He got made fun of today because he was so little.. But I said.. "Well you are little, and it's way better to be little than mean to others and make fun of people who are different". That seemed to make sense. 
He can totally rock his 5t shorts. And they are a little big on him:) 
Standing in line to go in. 
Look at this cute little guy in his new towel. Thanks Grandma!! 
Six weeks and wearing 3-6 months clothes.. He is growing like a weed. He is working mega hard to get big. It's very serious work. 


Yesterday MayLee had a CT of her lungs to help us see if she is improving. I took baby brother because, well, I am his groceries. 
We headed up to the main campus bright and early, checked in right in radiology and waited for a few minutes until May was called. Then she talked, sang and played until they put in her IV. 

She was not happy about it until the nurse brought in a huge treasure box and there happen to be Play Dough in there. 
She passed up a ballerina Barbie and a my little pony DVD for yellow and green play dough. She did fantastic. That is one of the fastest tests I have sat through. Like five minutes. Then when they were waking her up she was like a little slurred drunk. She kept saying "I was sooooooooo bbbbbrrrrraaaaavvveee"  she was cracking very nurse up. She was super happy and ate her Popsicle and then crackers. They wanted to keep her all day. 
The doctor called today to let us know the results. MayLee's lungs have significantly improved. She still has the ground glass opacities in her right upper lobe and middle lobe. Her left lobe looks clearer. She is still going to be on oxygen for a while. Until she can maintain her saturation level. BUT.... We are going in the right direction. Awesome right? I did figure out that I should get the smaller tanks and it has been so much nicer. 
And we will leave you tonight with this little milk drunk boy! 

Sunday, July 26, 2015

Constantly

Each day he gets this kind of love!!! 
His face says it all. 

Saturday, July 25, 2015

Pioneer Day, but happy 6 month heartiversary!

Gator had an amazing clinic visit on Thursday, blood panel looks good, echo looks great, feels awesome, looks like he is growing. We are so pleased with how well his health is. This means he gets to start school on Monday!! (Did you hear the chorus of Angel's signing?) I am so glad he gets to go back to being a typical boy. Plus also, as much as we love each other he will be thrilled to not be with mom 24/7 and since I have the new little buddy that has filled the spot I am thrilled to let him go. He is slightly nervous, we met with school staff last week as well. We updated everyone on his 504 and came up with a game plan. It was amazing to cross so much off of his 504 instead of add to it. I have meantally prepared for lots of adjustment tears, lots of this is hard, and lots of growth in him. But we Homies don't give up because something is hard. We don't have to be the best at it, we just have to try our best. 
Yesterday marked his 6 month heartiversary. I took a minute to thank our Heavenly Father for his amazing second chance at life. I also thanked Him for our donor family. How their hearts must still ache. I have my first draft of the thank you letter we will be sending them. I have written probably 12 letters. This letter will be the one I want to send. Daddy wants to add to it as well so that it truly comes from us all. 
The kids did a primary pioneer parade. It was also a water activity so they have their swimming suits on. 
Ry and Alex visited the dentist and Ortho.. Alex has a cavity to be filled. I am thrilled it's only one little one after the year of meds and other stuff going on in his mouth. Ry had her bands changes and since her teeth were growing over her wires she got four teeth pulled.
She painted this rad tooth box because our tooth fairy has had so many issues. It worked, the tooth fairy was able to retrieve her teeth and deposit the cash. 

The kids have been helping with dinners and clean up. But I thought these green and purple beans were super fun. When you cook them they go green. Such yummy fun. 
This is Asher hanging out, while me and Gator have breakfast after clinic. 

Plus... We are still having fun.. Thanks to the Zamoras for your friendship that allows us to hang out but also lets the kids swim.. 




Monday is going to be super exciting!! Hurray for school! 










Monday, July 20, 2015

#9months9tips medical momma version

Hurray!!! Asher is such a fun baby and his whole six weeks of yummy means we are snuggling and smooching on him constantly. The only down side is, he ends up smelling a little like kid breath from all the smooches his siblings deliver.

I was asked to share 9 tips about pregnancy from American Recall Center #9months9tips
While I am not an expert on pregnancy AT ALL. I have just had a baby, all the while Alex got his new heart and MayLee is still dealing with her NEHI and Tethered Spinal Cord Syndrome. So I think it is only appropriate to suggest how we survived. Here you go!!! 
#1- Use your village- When they(who ever "they" are) say it takes a village to raise a child. It truly means a small village of friends, relatives, church members, school staff, medical staff, and even strangers who are willing to step up and help you. Most people want to do something tangible. LET THEM!!! If you feel stressed about having someone else wash and fold your undies..get over it, they wear undies too.
#2-Organize the madness- if you are a pregnant medical momma chances are you have tons of doctor appointments, therapies and regular life things. Get a planner of some sort and write it out. Take that little planner/bible with you everywhere. I planned meals a week in advance in mine just so I didn't have to think. I even wrote out when I assumed meds would need to be reordered so I could order when ready. MayLee is on oxygen and I have to make sure we have enough supplies on hand. I write down what supplies we like too, so I have everything in one handy spot. I love the Mormon mommy planner.. There is a version that doesn't have the scripture references and Mormon quotes for those not of that faith. I highly suggest it. I also am sort of obsessive about to do lists. That means I can see what needs to be accomplished and cross it off as it gets done. If you are a pregnant medical momma and don't make lists, try it, it will change your life. 
#3-Jot it down-in my fantastic planner, there is room for everything my pregnant brain can't think of. I even call it my brain on occasion. You will forget, possibly seconds later, so write it down. 
#4-Take a mommy time out- if you feel amazing during pregnancy.... that is super.....(lucky)! If not, and can't take time from doing meds or vitals or a feed.. Or the bed got fed instead of the kiddo... Schedule a time out. You need to rest. Even if it means you clean up later and snuggle someone while reading a book. A funny thing for me, a quick mental time out, a quick picture. People will not believe you survived and neither will you. 
#5-Find someone to vent to- I am pretty sure if there is something called prepartum depression I had a nasty case. I love the end result of pregnancy, I would do anything for my children. I am just one uncomfortable, short tempered lady. There were a couple of people who really understood that and let me talk to them. Then I would pull up my big girl panties and move forward. Venting may have saved me. Sometimes when we are under medical stress with our other kids, plus we don't feel well ourselves just telling someone alleviates the pressure of it all. 
#6-Every move of the baby or lack there of is a worry and it is valid to feel that way- I have had my world rocked nearly off its rocker more than once with my kids, plus I have been discouraged by miscarriage. I had a doctor say those feelings of worry are not abnormal. I could have hugged her. If those feelings did get a little out of control I would sit down and make a mental list of what I could and could not control. For some reason that helped. Some things are just out of our control. They aren't my fault, they are just going to happen no matter what. 
#7-Follow up with Maternal fetal medicine or your medical child's specialist- I know first hand that the medical world is expensive. I know that sometimes diagnostic test and procedures just aren't in the budget. But if a specialist suggested a test we found a way to foot the bill. With Asher, I saw MFM and we had a fetal echo. I wanted to be prepared, I also wanted to rejoice if he was developing perfectly. Each night before the tests I was a mess, but I was so relieved after each one. The amount of comfort was worth every penny. They can't catch everything, NEHI can't be diagnosed in utro, but knowing his heart looked good made me feel so much better. Take that list of questions with you too. There is currently a study that shows risks when using Zofran while pregnant. Many friends have asked if I was aware of the possible chance that it causes heart defects. I don't get as sick with my boys, so I didn't take it with Alex, but I did with my girls. I looked into this because I wanted confirmation that I didn't cause Alex's heart defect. I read almost every article I could online and then spoke to MFM. It seems that I couldn't have caused the defect. I would have liked this Zofran resource from the Recall center. It is just one more tool in my tool belt of knowledge. 
#8-Don't forget daddy-Dad's are working hard to make sure everyone is comfortable....with like a house, and food, and so you can take care of your kids medical issues. They really appreciate a play by play sometimes. There are lots of dads that get left out. I have done that on more than one occasion. Take a few minutes and teach them about meds and such so in a pinch they can help. Plus, they are usually the most willing to go get food or a special treat.  So call, text or write a love note while you are sitting at all those doctor appointments. 
#9- Rejoice in the child- I remember when I was pregnant with Eden, my number 3 baby. Before we knew her gender people would often ask what we were hoping for and I would say that I didn't care as long as the baby was healthy. Alex in his sweet little voice looked at me and said "but, I was sick did you still want me?" And the answer is YES. A million times yes. We wanted a baby. Being healthy sure has its perks and watching a little tiny baby hurt and be in pain isn't fair or fun. But every moment I have with my children is even that much sweeter. 

There must be more tips out there for medical moms who are expecting. If you have a great tip leave it in the comments. 

Sunday, July 19, 2015

Red pants

When dad puts on his red pants the kids know it's time for a WWH smack down. 













Yummers

He just looked so yummy I had to get a photo. 




Boys camp out, girls activity, movies, and plays

The guys on my side try really hard to get a camp out in each year. I really love camping. My parents made it so fun growing up. Most of our family vacations were camping trips. I love the way the tent smells on a warm morning, the sounds of life and nature right outside, and the food (everything tastes better cooked outside). 

When Henning and Asher are big enough, they will join these two big brothers and papa.
Mom's brothers, Uncle Marcus and Uncle Chaison fill Gator in on all the s'mores secrets.
"How can I have s'more of something, when I haven't had anything yet" -Sandlot
My cute campers
Fishing the next day proved to be awesome.. Gator managed to pull in 6 fish and Wells got 1. They are catch and release kind of guys so each episode fish made it back to its watery home. 
Cousins salt and pepper
While the guys were off camping the girls hit up Food truck Friday at the Peterson Family farm. 
Then we hit up the Minion Movie the next day! 
Averee came to stay with us this weekend too... Prelsee's last weekend with us. She moved back home to go to school. We sure miss her, but we are thankful for all she did during our crisis time to help and now she is moving forward. And it's not like we won't see her all the time. 

This weekend Ry and Eden got to see The Little Mermaid at Hale Center theater with Grandma and Papa Homer. It was amazing. 
Ry was having a tummy ache so pictures were torturous. 
Papa selfie!!!