Angel Isaac, our special heart friend

Truth be known, although things have been crazy today with American Idol and what-not, my mind has most definitely been on other, more important, thoughts. I found out yesterday that a heart friend earned his wings on Sunday evening. This little Isaac is two days older than Mercydez. I have sat and talked with his sweet, beautiful mother, Jessica, on more than one occasion. My heart is broken. I can't even begin to express what I'm feeling. I had the amazing opportunity of meeting Isaac. He is such a sweetheart.

I am in so much shock. I don't know what to think. All I can think about is, "How are Jessica, Paul, and their girls doing? What are they thinking?" It's sobering. So sobering. When I read about Isaac's passing, all I wanted to do was take Mercydez in my arms and hold her close. I have so much on my mind. My thoughts are racing and at the same time I feel like I can't think.

From my understanding, Isaac and his family were put in the same scenario as we were... take your baby home and enjoy them while you can. From my understanding, Isaac was supposed to go home yesterday. Obviously, he didn't make it. This prognosis is not a bite easily swallowed. In fact I still haven't swallowed it. It terrifies me to think of the day when Mercydez will earn her wings... be that early in life, or late in life. To have heart friends earn their wings is a hard wake-up call. This world is not perfect. Doctors are great blessings, but they are not God. The timing of death is not a call we humans get to make, no matter our education or experience. Sometimes, death at a young age is inevitable. It's hard to have these realities face you head-on. My heart is with Isaac's family. I can't stop thinking of them. I have had a constant prayer in my heart for them. I am so sorrowful that they have to face THIS reality. I don't understand what they are experiencing, but from what little experience I have with this situation, I know it is only because of a loving Heavenly Father that they are able to continue breathing.

I remember, the weekend before Mercydez was to be extubated, Jessica came and sat with me and a few of my family members for a couple of hours. She brought cheerfulness and love with her. When I was telling her of Mercydez's prognosis... the "take her home and enjoy her while you can" prognosis, she cried for us. She told me that she didn't know how we did it. She was so sincere in her heartfelt sorrow for us. I am so amazed by her. At that time Isaac was doing pretty good. He was on the path for a major heart surgery that, often times, helps and corrects the heart issues he had. At that time, it didn't seem as though Isaac would leave this world at such an early age. Now, it is as if mine and Jessica's roles have been switched. Here I am, with little Mercydez who, as far as we know, is stable. And Jessica and her family are experiencing the ultimate heartache. I know in my "down" moments, I just wish others would leave me alone and at the same time, be with me. I would wish that others would hold their children close, love them and understand the blessing they have in having a child who is healthy and is expected to live a long, active life and at the same time, I wouldn't change a thing about my little princess. These down moments are difficult. For me, the worst thing a person could say is, "I understand what you're feeling" or "I understand what you're going through." While thinking of the heartache these good people are experiencing, I feel some guilt in the fact that I am blessed enough to still have Mercydez with us. I am so grateful! I am so grateful! I hope to never take advantage of any second, any minute, any day I have with my beautiful daughter.

I don't know how Jessica and her family are enduring this. She has always had an amazing strength about her, but still... these types of heartache... can burden even the strongest of people. My heart goes out to her and her family. I am so sorry.

A Few Crazy Days

THIS.... IS AMERICAN IDOL!
Wow. These past few days have been so busy and tiring... but ever so enjoyable. My sisters and I and a friend all decided to audition for American Idol, beings that they were here in Salt Lake City! Sunday morning we were up at 2:00AM (yeah, you read that right) so that we could be one of the first in line. Whew, talk about nuts.... not the line. Us. I'm tellin' ya. It's amazing how funny the smallest, and truly the dumbest, things can be when you lack sleep. I think the four of us annoyed everyone around us. But the great thing is that we didn't care! Ahhh, the beauty of ignorance. We got our sweet "American Idol" wrist bands and our tickets and were outta there by 7:45am. This was much to our pleasure because we were expecting the ticketing process to take up the entire day. It was great to get home and get a little extra sleep. I was able to rest a little bit on Monday (oh, wait, that was yesterday. Wow. I'm so tired. It feels like yesterday was a week ago) only to get up at 3:00AM (once again, you have read that correctly) to head back up to the Energy Solutions Arena where we sang "Aint No Mountain High Enough" a million times on the way up, only to sing it a million more times as a crowd inside. I've decided I hate that song. I think we screamed our guts out previous to auditioning (what is American Idol thinking??? Don't they know it takes your vocal chords an estimated TWO WEEKS to recover from a scream??? And they expect us to audition after that?!?!). Oh, and we were once again drunk off off an alcoholic beverage... perhaps you've heard of it? It's called "LackOfSleep". This was such a fun experience! We gained some great memories! We didn't make it through, but truly, we were all smiling and laughing afterward anyway! We wanted to do it simply because, well, we wanted to. There was really no expectations, no catiness, and no desire to get upset. We just wanted to have fun. And that it was! I will never forget the fun we had! Nicool, Auriel and the British Boys, Addy being so nice to stalker-boy, "I Unique", and "Yes, First Time Audition". Oh, what fun!

READERS DIGEST VERSION OF MY WEEKEND
It was a fun, and very eventful weekend, to say the least. Travis and Adrienne's neice and nephews were here through the weekend because their mommy was in labor with their adorable little brother Keegan and we had a birthday party for my dad, whom I love deeply. It was nice to get together, have a tailgate barbeque, play some games, and hang out! I love my family so much! I am so blessed with the family I have! None of us are perfect, but that's the fun of it all! Imperfections make life adventurous. It was so great to be together to celebrate our dad. He has truly helped shape us. Of course, he too is human. But he has taught us that life may throw you hardships, but you fight to get through them. Both my parents have taught me this in so many ways. I try to take every opportunity to express my love and appreciation for my parents. I am so blessed.

MY HORRIBLE PIONEER DAY
Speaking of parenting... I had one stressful "Pioneer Day" (a Utah holiday). It started out great! Adrienne and I joined my mom and my little brother, Kolton, for a ward breakfast. It was so much fun to see so many I grew up knowing! I love the 4th Ward! I miss so many of them! We took Mercydez with us. It was so great to let everyone finally meet her! My mom held Mercydez while I ate my breakfast. It wasn't two seconds after I handed off the cute little princess that my mom disappeared. I watched as my mom traveled from table to table, person to person, to show off our cute little baby. It made me so happy to see that so many truly care. As we were getting ready to go I had a feeling to check Mercydez's gastrostomy site... and guess what? IT HAD COME OUT! I was a mess! I called our nurse, who was with another patient and had to call me back later. So, I called as many of my nurse and doctor friends as I could think of! It eventually got to the point where I just had to brave it and stick a catheter into the site. Wow. That was quite a big deal for me. I had received a tiny bit of training before Mercy was discharged from the childrens hospital, but I never had any hands on... and that is how I learn. Anyway, it was to our advantage that I put the catheter in. Our wonderful nurse, Moira, came and put the gastrostomy back in. Well, come a few hours later it fell out AGAIN! I was so mad! We called DME suppliers and hospitals. Apparently no one keeps any of these in stock. I guess we are the only ones who have ever experienced and emergency and needed one right away (my voice is seeping with sarcasm). My family got together to play volleyball and what-not at my in-laws home but I was so angry I just sat on the couch holding in Mercy's gastrostomy while she ate, ready to cry. I was pretty mad, to say the least. By the end of the day, I was ready to call it quits. Things ended up working out though. We got a new gastrostomy on Friday and so far it has been great. Ha! I guess it's just that fact that people don't want to help you on a holiday. Yeah, I'm still a little bitter about it all.

Anyway, I feel as though I've had a very adventurous few days. This remainder of this week isn't going to be any easier. We've got quite a bit going on, so, come Sunday, I'm really going to need my day of rest.

SIX MONTH BIRTHDAY PARTY!!!

(22 July: The ballerina princess! We love you!)

(22 July: Mommy and Mercydez)

(22 July: Cousin Braxton came and partied with us!)

(22 July: Uncle Kade had WAY too much fun in the blow-ups!)

(22nd July: This is the AWESOME Titanic Blow-up! Adrienne is at the bottom, Nic is trying to climb up, I'm at the top with Kacey! Waaaahooooo!)

(22nd July: We have such a wonderful, supportive family! We love you all!)



(22 July: Uncle Kacey being a dork!)

(22 July: Nic comin' down the blow-up!)

(22 July: Nic trying to climb up Titanic)

Deep down inside I think I've always wanted to be a mom. I've wanted to be at home, with beautiful children and teach them. My mind and body has come to recognize from my spirit what I truly want in life. I am so grateful that I have an amazing husband who supports this dream, because it's his dream too! He wants me to be home. There is so many scary things going on in the world and I've learned you can only trust a few. I would rather be with my child, caring and raising her, than having someone else do it. In no way am I trying to demean anyone who chooses differently. Many have no choice... there are so many amazing mothers who would love nothing more than to be home with their children, but they can't. I have a great deal of respect for these women. They work overtime, the work hard. I am just grateful I am able to live the dream of being home. It's not always easy (infact, I honestly think it's harder than almost any job out there), but it's such a blessing.

(22 July: Grandma and Mercy, just chillin')

Mercydez is amazing! She's a six-month (and counting) miracle! In celebration, we had a BIG party yesterday! We had all the Gourley's and the Haws' together and we went to Jumpin' Jacks in Springville! It was SO MUCH FUN! We had a "Castle" party room and we had pizza and icecream cake! I ventured out and decided to make the cake instead of ordering it! I felt like such a domestic diva!! Ha! The icecream cake was so good (if I do say so myself)! I made a TON of cakes thinking they'd all be gone in a hurry, but I made WAY too many! It was fun anyway! After eating and talking we opened gifts that so many brought. I was humbled. We were honestly just wanting to celebrate Mercydez and her achievements and we had so many who were so willing to give! Oh my goodness! Talk about cute outfits and hairbands and books... and even a WAY cute little girls umbrella! That'll be perfect for shading Mercydez's eyes when we're out and about! We are so grateful!

(22 July: The much-loved icecream cake)

After opening gifts we were able to bounce on the HUGE toys! It was so fun! Nic's neices and nephews were having a blast on this huge blow-up "Titanic" Ship thing and they were all crowded to one side on the top! All of the sudden the blow-up started to tip and we were all screaming! There were a lot of people who jumped up to try to catch the blow-up (I think it would have been quite comical to watch that happen) but the kids were able to even it out and everything was okay! What we didn't know was that Nic's brother, Zac, was up there with the kids! After things settled down, Zac suddenly popped his head up! It was sooo funny! Here we were, screaming with terror because the kids were getting out of hand, and yet it wasn't just the kids! It was Zac too! We had a good laugh out of that!

(22 July: Zac attempting to climb up to get Kolton, Lucas, and Lucy)

(22 July: Ahma with Mercy... what a beautiful ballerina!)

It was such a great evening! Mercydez was the princess and did she ever look it! We put her in an awesome pink and white tutu with a matching bow. Her onsie said "The Princess Has Arrived". She was soooo cute! She's ALWAYS cute!

(22 July: Aunt Auriel, Mommy, Aunt Addy, and Aunt Ashley were bringin' down the house!)


It was so wonderful to have everyone together to celebrate Mercydez and how far she's come! Here's to our sweet Mercydez! We hope and pray we have many more half-birthday celebrations to come! We love you!

Formula Struggles & Doctor Follow-ups

(Sunday, July 13th: What a beautiful little girl)

Bless our sweet little angels heart, yesterday was a hard day for her. We are trying to find a formula that she can tolerate and it has been so difficult. Yesterday we tried a formula that has no soy in it (we are being led to believe that Mercy is allergic to soy). We mixed one part formula with three parts breast milk. Needless to say, it was WAY too much. Just moments after her feeding was complete we noticed that she was getting red splotches all over her body. They resembled hives. Then her heart rate increased dramatically, and her entire body turned bright red. Her O2 sats were MUCH too low, so we increased her oxygen significantly. Even on oxygen her sats were too low for comfort. It was scary. Nic and I were just holding and loving her, trying to help her in any way we could. We called our wonderful hospice nurse, Moira. She came over and we decided that Mercydez has an allergy to something in this formula too. So, on to the next. I'm going to try calling my doctor and ask him about Goats Milk. I've heard that goats milk is given to babies who don't tolerate formula.

It's so hard to watch Mercydez suffering from something that shouldn't cause so much irritation. It was very frightening to see her struggle so much. Part of us was so fearful that this was the moment we had been dreading. Nic gave Mercydez a beautiful blessing, which not only helped Mercydez, but helped the two of us as well. It's so hard to come upon those moments, those scary times, when you don't know what to expect. My mind was all over the place. It was hard. Up until this point it has been the really big things that have scared us. It's hard to have the little things affect her too. We'll get this formula thing resolved though. About an hour and a half after Mercydez received her blessing and after we gave Mercydez some benadryl, the rash and redness disappeared and her sats were back to normal. We were able to lower her oxygen back down to the normal rate and she's been doing well since. We've just been giving her the benadryl regularly. We won't be trying another formula for a few days, at least. We want to make sure her body is back to "normal" before we risk upsetting it again. But hopefully there will be a lead with this goats milk stuff.

(Sunday, July 13th: Mercy was too tired to care that Daddy was playing with her)

Mercydez sure was cute last night! Her hard day lead to a big dose of sleepiness! Mercy immediately fell asleep once Nic held her. She's just so darn cute! Even when she sleeps! We just can't seem to get enough of her. She truly is an angel in our lives.

(Sunday, July 13th: Our princess is so beautiful!)

We also had a follow-up appointment with our cranial-facial plastic surgeon, Dr. Siddiqi, last Thursday. Even though it was a day at the hospital, it was nice to be together as a family. Nic is such a hard worker. It was such a blessing to spend some time with him. Dr. Siddiqi felt like Mercydez is ready for her lip repair. The pallet would be done during a seperate surgery. Of course, Dr. Siddiqi wants us to see Cardiology before he will do anything. We are in the process of getting that appointment set up. Even if Cardiology gives the okay, we are uncertain if we will pursue the surgery. We are trying so hard to do only what Heavenly Father wants us to do. Our little girl is such a blessing. She's suffered through so much already. Whatever we are called upon to do, we will certainly do all we can to accomplish it!

Unfortunately, we didn't have our camera when we visited with some of our good friends! We stopped in the NICU for a brief moment to say hello to our wonderful friend, Dr. Null! It was such a joy to see him! It was a relief to give him the hug I've been wanting to give him for two and a half months now! We love Dr. Null! Even though Mercy wasn't able to really "show" her excitement in seeing Dr Null, we know she loves him! We were also able to visit with Emilee, one of the BEST nurses we've ever known, and also a wonderful friend! She's no longer in the NICU, so it took a little bit of time to track her down, but it was worth it! We love Emilee so much! She's gonna make the best mommy ever! She's going to have a little boy next month! We're so excited for her! We weren't able to visit with our other friends. Some weren't in and we also ran out of time. But, next time, we hope to visit with those we weren't able to.

Our INDEPENDENCE Weekend

(Friday, July 4th: Aunt Auriel, Mercy, and Ahma)

So, I've decided that HUGE bows on li'l babies have got to be the cutest thing EVER!!! Mercydez was decked out for the 4th and she looked soooooooo cute! I just wanted to squeeze those adorable cheeks and kiss her over and over! (Sigh) I've got such a cute little girl!

(Saturday, July 5th: Mercydez and Mommy are kinda tired. Cute bow though!)

(Friday, July 4th: Ah, what a sweet, patriotic li'l angel!)

Oh my goodness! What an amazing weekend we've had! It has been a fun, and MUCH needed weekend! Thanks to my ever-giving and self-sacrificing mom, Mercydez and I were able to get out! For many reasons, taking Mercydez places is NOT a one-man job. We litterally have six or seven "diaper bags" we have to take with us. Not to mention, I need support when people give weird looks like, "what are you doing to that poor child?" or "why do you have so many bags with you for JUST one baby?" Ha! Little do they know! No, the looks are more comical than anything, but still, sometimes it's hard.

Anyway, We got to go to the parade and let little Mercy enjoy the sun (okay, so we actually hid in what little shade there was), she got to enjoy mommy constantly putting cold, wet hands on her beautiful red hair to keep her from overheating, and she got to be with family and friends! Who could ask for more? Afterwards, all the Gourley's and Haws' got together for a fabulous BBQ in the Haws' huge backyard! We enjoyed playing WAY too many games of sand volleyball and we also enjoyed standing (well, Uncle Kade sat) in the freezing kiddie pool! It was great relief from the extremely hot weather! We enjoyed food, games, and family! We had Mercydez outside for a good portion of the day, so when it came time for fireworks, we opted to stay inside to let her relax. Over-all though, it was a fabulous day! Saturday was great too because my mom and sister, Auriel, came and got us and we went to the Freedom Festival booths! We had lunch outside... in the shade, of course! Those empanadas were delicious! And then back home we came!

(Friday, July 4th: Ahma and Mercy, enjoying each other!)

(Friday, July 4th: Ahma, laughing and protecting Mercydez from the sun. Mommy protecting the oxygen.)

Mercydez tolerated everything this weekend so great! I was worried that it would be a little too much stimulation for her to deal with, but I think, in many ways, she needed to be out. Needed to experience normalcy. I am so greatful for my mom and her willingness to be there to help.

The one down side to the weekend is that my (truly perfect) husband had to work. Home Health doesn't know the meaning of holidays. So, he didn't get to join in on the parade (which, I'm sure he was totally bummed about... wink, wink) and he missed walking through the booths (another huge downer for him... yeah, right). But, he was there for everything else! He is such a great guy! I am blessed with the best!

Miracles

Mercydez has been home now for two months and one day! And tomorrow Mercydez is six months old! We're trying to put together a fun birthday bash for her! It, of course, won't be on her six month birthday, but it will be sometime this month. We're workin' on it! Mercydez is doing really well! We took her to her doctors appointment last week and our doctor was completely blown away by how well she's doing. He just kept calling her a miracle baby. We already knew this. We've known this since our twenty-week ultrasound... infact, before then. He said we are on "uncharted water" and that she was at the wheel of the ship.

Looking back, she always has been at the front, taking the lead, and Christ has always been her lighthouse. Those many months at Primary Children's Hospital... she never listened to those doctors. Truly. She never let their guesses or predictions tell her what to do. She struggled, yes. But she always overcame her struggles. She's a sweetheart in every sense of the word. It's such a joy to have her.

This last week I met with a fantastic doctor who also has a child with Charge Syndrome. It was such a relief to talk with him. I felt like he truly understood me. There are so many difficulties and hardships that have to be endured. This doctor, this father, described it as perfectly as possible. Even if I were to repeat what he said, I feel like most wouldn't understand because it takes such a deep level of experience. I don't mean to demean or hurt anyone. I've just come to understand that there aren't many who truly understand the depth of what I'm experiencing. Last night it hit me, and quite forcefully, on how "alone" a person can feel, even if they aren't "alone", litterally speaking.

My mind has also been turned to a sweet little baby I'm associated with through a heart group. His name is Charlie and he returned to Heavenly Father last Thursday. I've just been thinking, constantly, about this little one. I've not been able to get his family off my mind. I've cried many tears for them. My heart has been theirs since I heard the news. I'm praying for you.

I've learned, in so many different ways, that miracles surround us. Often times these miracles come in packages we don't recognize. I've truly learned, from my own experiences, that sometimes life is the miracle, and sometimes freedom from life is the miracle. Sometimes to understand these miracles, we have to take a time-out and step back. If we truly look at our lives, study our lives, we will see miracles.