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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Wednesday, July 31, 2013

Well, it's more gooby than I thought!

After taking this picture I realized it looks more gooby than I thought. I emailed this shot to neuro. They told me they would show the surgeon and let me know what our plan would be. It's unfortunate because the fix isn't just quick in the office. It's a operating room trip. 
I am trying not to worry yet. 

So don't mind the yucky colored fingernails that I chopped off this morning. I had a dark hair color client last night and had completely run out of gloves. But here is a shot of the whole thing.

How its been going

Well no news is good news. It means I have been so crazy busy being home that I haven't had any time to update.. May has had a few things that I have felt uneasy about. We have such wonderful friends. Bro Gee came to look/listen to her. She sounded a little junky and her incision looks slightly infected. I took her to the doctor as soon as the clinic opened on Monday and she has an ear infection and popped through two teeth in the process of healing from surgery.  
Airing out her incision.. 
16 total visible stitches 
Kinda looks ouchy
We got the stitches removed last Thursday... The whole....come in any time to get them removed, thing is tricky. I left feeling frustrated and a little forgotten. The stitches were out and that is what matters. It was just an off day I bet. Well May continued to have labored breathing, a low grade temp and just really clingy. She fussed any time I put her down. Neighbors brought in meals. At first I didn't think we would need it. After all May is six months, I am not trying to recover myself. But what an absolute humbling experience. I am so thankful. Because May has hardly let me do anything. I scramble to do house keeping while she naps. So having those wonderful meals brought in was so incredible. Sleeping has been an issue... Let me say, seeing every hour tick by in the night gets old really fast... My brain needs time to reboot and 45/50 minute increments is just not cutting it. Glazed eyes is the new look. I also called pulmo to find out when she can ditch the oxygen... We will discuss it in August when we see them again. The night after I talked to them I had a very strange dream. It was short, I dreamt that both Gator and May needed oxygen this winter and we were hauling around two tanks, gear, concentrator at home. Well, I asked my Ped if we could get a handicap  placard for our car. She told me no, that I was buff enough to carry two tanks, the diaper bag, and the baby in her carseat... I cussed her out.. It was sort of comical because our doctor is amazing and I am not a huge cusser. I really don't even like yucky sounding words like moist... Moist is that place between your toes or behind your knees on hot days... 
I digress... 
Funny stuff, those crazy dreams. 

So after a nice visit to the clinic she is on an antibiotic which we hope will also kill off any infection in her incision. It is coming apart a little I can see the desolvable sutures. ( I will take a photo tomorrow when she's awake) so I am still slightly concerned, just not that much. There really isn't much that could be done. 

I have pictures of the kids first days of school.. 
Tomorrow! 


Monday, July 22, 2013

All Pinked out #8

Miranda on her Vaca wearing pink for May!!! You are awesome...
Ang and the boys!!! Pink eyes totally count!! 

The sisters in Cali all wearing pink for MayLee!! Love you sister Clawson!!!


I forgot...

I forgot to post this picture of May on her walk last night... 
Sober Sue...

We love being on our own carpet. 


Friday, July 19, 2013

Discharge that super star patient

We loved our nurses and think they miss us when we go, from daddy who teases to mom who giggles and makes it more of a girls night out, we LOVE them all. May is a rock star, she is doing so well that we were sent packing. She is still on oxygen and we are staying on top of pain. I learned how to do a mud flap dressing. We are home and organizing supplies and of course snuggling. I have to make up for the last 48 hours of not holding her. We go back next week to get stitches out. It is amazing to have her doing so well. It is one of those many miracles that we get to have and be thankful for. The older kids have been with aunties Lisa and Averee during the day and loved every minute of it. I am ever thankful for them for their ability to step in and help. It seems like such a burden is lifted knowing that they are taken care of. Mom and Dad have been so awesome to organize the details so I don't have to think twice. It is extra amazing because both of the grandma's have taken time to learn Gator's meds and how to give them. It is tricky business to be family with us. My other sister on mission in Cali has prayed and fasted for her little niece. How lucky are we to have those special things done for us. And we have felt extra special from all the pink. I know such a simple thing seems impractical, but it shows us that the support is tangible. My eyes leak a little when I think of it all... Heavenly Father sure knew what he was doing. So did MayLee... She knew she would be a reason to smile and a reason to love even if her little body had to be in pain and her mommy and daddy's heart would just about break to see her sick. I am so blessed. It is always a reminder to me when we spend time in the hospital, that it isn't about me. The best place to "find" myself is doing good for others. That everyone has something that is hard for them and that someone out there has it harder than you. A momma we shared a room with, had a teeny baby who wouldn't eat. Last night while it was quiet,(she must have thought i was snoozing) you could hear her quiet sobs and sniffles. She was so overwhelmed/hormones that she just bubbled over. I finally asked if she was okay and we chatted for over an hour about her struggles... When we finished she said she felt better about everything but we hadn't talked about me. I told her its okay because I have so many of you who listen to me regardless of if you want to or not:) thank you with all my heart! 


All Pinked out #7

Thanks Stevens family!! I love those socks guys!!! They look so cute!


The Francis Family in Cali is wearing pink for May, all boys... Mind gets to dress them and do toes at least one time!!! Love you!!!


Recovery day two

We last left off where May was doing great. That continues to be our trend. She is down to .75 liters of oxygen, she has had the dressing changed twice and needs it done again. Her bowels have woken back up. Her color looks great. The amount of Lortab she needs has gone way down. We will try and keep it to Tylenol and Motrin today! She is eating a ton. I can tell as soon as she sits we can try some solids again. Her tummy rumbles because the BM doesn't stay in her tummy long enough. I was finally so exhausted that I had the staff make bottles of expressed milk to give her so I could get more sleep than a few minutes!  I was so sleepy. It is strange because I don't really do anything but stress out but always feel so tired. We are hoping to go home tomorrow:) we had originally thought today but realistically tomorrow:) 
This little girl has sneaky sneaky toes... She can get almost anything off her feet. So mommy did a little Mcguvier (sp?) and put her sat monitor on her hand.. Then wrapped it with a cuff, then a sock then another cuff.. Yeah, we went there.
We had to keep notes out for everyone to see. 
She is so sober in her Lortab cloud. 
The collection at the end of the crib. Sometimes I get a little OCD and organize. 

We had to keep her feet wrapped separately so that she couldn't take off anything. She did like to have one foot out to "breath". 




Thursday, July 18, 2013

Mays new scar


This is her incision, her and Gator are twinners now.. Well kind of:) 

We just love our docs and nurses.. I can never think of a good way to tell them how much we appreciate them. I did find this cute basket of treats online. I know nurses and doctors are professionals who aren't "baited" but we want them to know that their efforts big and small are so important to us and we are grateful for them. 

First Day of recovery

We had an eventful night full of feeding and vitals. It has been a trick to keep her as flat as possible especially since she is a nursing baby. I have gotten pretty creative how I feed her. We laugh and call it gymnastics...(wait did I already write that?) Daddy would like a picture of the whole thing but it isn't very modest and I don't want everyone else in the world to see my "blessings". We are talking about a wagon ride... The surgeon came in and looked at her incision. He wants the dressing changed often. Also wants to have it kept as clean as possible. She had a sponge bath and yummy lotion rubbed on her sweetness to keep her smelling delicious. My Relief Society President Alison and her wonderful counselor Annie, came up for a visit and a hug. They were there for the suppository to wake up her bowls... And then for the expelling:) Good thing they are both mom's and have seen their share of hospitals in their own lives. We have been a little baffled at May's lungs. Her Sats are low, but her color is beautiful. She doesn't have strider or crackling. It is such a mystery. We have begun some of the testing to see if we can rule some things out while we are here. It is planned to have and x-ray and then to also take some gasses. There is a worry that we won't get conclusive answer this close after surgery. It may take time for her to heal until we can figure out what to do about those tricky things.... I always wonder why the world continues to progress while we feel like it stands still while we are up here. I did pay our mortgage...whew!!!! We are so thankful for this hospital. Last night for dinner we went to the beautiful Family Room. It is similar to a Ronald McDonald house but right on the hospital campus. A darling Mother daughter team from Logan made CafĂ© Reo knock off for dinner.... MMMMMM.... The nurses have all been the best in the hospital I am sure of it... We are just getting better and better....I have the other pictures on my phone so I will have to post those in a minute....

All Pinked out #6

My awesome YW!!! 


And some of the amazing leaders!!!

Wednesday, July 17, 2013

All Pinked out #5

Here are a few more of our sweet friends and family who are wearing pink to support us! 
The best giggle I got all day!!!! Thanks Gee's, you are so awesome! 
Miss Addy is representing the Brough clan!!! Thanks guys!

Hehehe, that gorgeous warm glow and cute pink is warming us all the way from Florida!!! Thanks England family!!! 
Here are a few more folks from Beehive that are tickled pink for May! Thanks guys! 


Four generations in one room!!! 

  



All Pinked out #4

These cuties are a mix of the Walkers and the Bates!!! The darling redhead in the back is Mayli too!!! 

Although we don't get to see these guys very much anymore, they still support us!!! Thanks Leydsmans! 


May update #3

It's been busy around these parts. I was able to go back to the PACU while May continued to wake up. She had a very itchy nose and wanted to wake up very slowly. She also wanted mommy and a huge snuggle and maybe something to eat. When you don't get those things you tend to be a little grouchy. It took us a long time, moving to the infant unit and some gymnastics (me standing over her to carefully nurse her while she lays flat) and some Lortab to make her comfy. She is taking a snooze now. We are going to play musical rooms in like five... 

May update #2

I was up pumping when Dr. Walker came out. It sounds like everything went really well. He was able to detether her and also remove some of the fatty filum. Not all of it could be removed due to the fact that there was nothing to stitch it to to close. They are just finishing up, then we get to see her. 

All Pinked out #2

I just love the Anderson Family!! Plus the boys (not pictured) are also wearing pink to support May! ! 
 Grandma sent this from her work at Beehive Homes where everyone is 'tickled  pink' for MayLee!!!
Thank you Beehive family!!! 

All Pinked out #3


Our cousins the Newtons Rock!!! 

The Wybrow's are the best!!!

Thanks everyone!!!

May update #1

After having a long visit between Dr. Uchida and Dr. Greensburg... They decided to move forward with the surgery. She has been intubated and is now Sat-ing at 100%. It should be 3-4 hours from now:)

Definitely one of us

Miss May went back sleeping in the arms of Doctor Greensburg the anesthesia doc. It shouldn't surprise us when we get hiccups. Miss May cant keep her Saturation levels up. They called Jeff to ask about this and then they brought in the big guns... Duh duh duuuuuuuuuh! Doc Uchida, our pulmonologist. We shall see if and what we will need to do. Those darn lungs are tricky business. It's hard to know what we need to do in order to help her with this until we have more testing. We won't get more testing until her spine is taken care of.

Waiting, napping, snuggling

We just spoke with Dr. Walker the neurosurgeon. He explained again what he is hoping for. He said her cord is held really far down there and we will just see how it all goes. I am confident in his quiet strength. 
Her incision should run from top to bottom... And he signed her bum:) it made me laugh! We are so lucky to live here in this wonderful valley. We are surrounded by exceptional health care and amazing family and friends. We are also blessed to have so many who love us from afar. Their words of encouragement and constant prayers lift us! 
I would never ever wish this on anyone, but I wish I could have every person I love feel as supported as we do. A fraction of this love would heal the world...   

All Pinked out #1

Nate all the way in FL..

Uncle Ry in NC!!!! 
Thanks guys!!!


It starts!!!

We made it here bright and early this morning... All decked out in her hospital pjs, she is ready for this to start because this fasting is for the birds. She wants to eat and daddy has to hold her because she has a keen sense of smell and she knows her groceries aren't far when mom is holding her. The drive in was so lovely!! The lights of the city against the mountains with a sunrise that framed the whole thing!!! It was calming and a gift from Heavenly Father. And although we just got pushed out if line for an emergency case, she just fell asleep in daddy's arms and is content! 
PINK

Tuesday, July 16, 2013

Pre-op and surgery Eve


Today I took May up for her labs. They need to take some blood to have blood products on hand. It took two pokes to get her little sample. She also got her fancy hospital bracelet and a sticker with her info on it. She did great and cried for just a few minutes... Then I turned on the 'Cuppycake' song and she stopped right away. That song is like magic, I tell ya! We went to the store to buy surprises for the other kids... All while Papa H watched the other three... Then we grabbed the kids, finished packing and drove them to Grandma and Papa C's house. 
I am completely awed by the love and support of our family and friends. My sister and sister in law are watching/entertaining during the day and Papa and grandma are snuggling after work. Friends and loved ones have already begun to pour out their love in the form of emails, texts, and Facebook messages. Both sets of Grandparents have taken all the worry about what we will do with Ry, Gator and Eden for anything. I am so thankful....
My friend says "my eyes leaked a little". My eyes certainly have. My heart is so filled with gratitude and love that there is almost no room at all for sadness.... Thank you so much! I took some pre scar photos of Mays back and have some cutie ones of her swinging...






Saturday, July 13, 2013

Mooooooove over!!!

Oh yeah, we went there. Free Chick-fil-a today!! We dressed up as cows. I thought we would only get the chicken portion of our lunch... We got the whole dang thing!! Best day ever!

Thursday, July 11, 2013

7-11

Oh yeah we did go there... 
 
And we waited in a super long line. But we got a Slurpee!!
 
Mine was sugar free and delicious!