Maycie, "The Superstar"...

Can I just tell you what a silly little girl Jake and I are growing? Goodness...she not only makes us laugh, but she has our doctors and our ultrasound tech laughing too. She is a feisty little thing, that's for sure. Today she had both of her hands placed strategically on her face, fingers-spread, and refused to move them. Little stink. She was even kicking so hard during the ultrasound, my whole stomach would jump. She made it very clear today [and every other appointment] how much she really truly does not like to be disturbed with a camera and spectators every few weeks. 

Today's early appointment didn't quite give us the answers we wanted but it did help us to know we will [hopefully] get them soon. Dr. Draper's office is organizing quite the shindig for us come October 30th. We will spend the entire day in between the University of Utah Medical Center and Primary Children's Medical Center. All in all, I think we have five or six appointments scheduled for the day. I can't help but think one of these appointments ought to give us some pretty good insight into Maycie's possible future.    

We will begin the day with yet another ultrasound at the Maternal Fetal Diagnostic Center at UUMC. We will then meet Maycie's Pediatric Surgeon at PCMC followed by a consult with the Craniofacial clinic. Maycie is also scheduled to receive a fetal echocardiogram to check on her little heart [which, by the way, looks healthy so far! Go Maycie!]. And then we will finish the day with Dr. Draper. Whew. What a day. 

Today Dr. D ordered what is called a "microarray" test on my remaining cells from the amniocentesis. Basically, they will look really closely at Maycie's Chromosome 3 abnormality and see what DNA is involved. Hopefully this will give us more insight into what kind of chromosome issues little Maycie will have. 

Dr. D also informed us Maycie will soon be a little superstar. Apparently a bunch of doctors get together twice a month for a big conference about certain patients at the UUMC. Dr. D asked if little Maycie could be the center of attention at their next conference. This is great because quite a few doctors can get together at once and discuss our little girl. But...it scares me all the same. I can't help but think if Maycie's several conditions were seen together often, she wouldn't need her own conference. I guess I need to consider only the good in the situation; Maycie will have several doctors at once discussing her medical chart. I should call it a blessing instead of a warning sign. 

We have a few other doctors appointments here in Pocatello before October 30th, but I am seriously counting down the days until the big one. Because, basically, I am sick of saying "I don't know" to our family and friends when they ask questions.

It's [his] birthday...

Hey, guess what? My husband is a quarter of a century old today. Geesh. Old man. We celebrated with a nice relaxing day filled with making good use of one of his birthday presents. 

Ah. The Big Bang Theory. Best. Show. Ever. But, okay, I lied. We didn't spend the whole day on our comfy couch laughing at the ridiculous antics of Sheldon. Believe me, we tried. But our new little roommate didn't allow it. Halfway through one of the episodes, a little tiny fury MOUSE ran across our TV room floor. Eek. 

You can guess the rest. Shriek from me. Anger from Jake. Big Bang powered off. Quick trip to Walmart for a few [okay, twelve] traps. Mad rush to set traps. Jake set traps while I stood on kitchen counter. Jake convinced me to return downstairs. Big Bang powered on. And....SNAP. Fury little friend caught in record time. Jake emptied trap AFTER having to put the little guy out of his misery with...a hammer. Happy Birthday Jake. 

See, this is why I love Jake. He hates mice. Maybe even more than me. But goodness, that guy sure knows how to take care of me. And I love him more than words could say because of it. Want to know a few more reasons why I love him? You know, like 25 reasons? Yep, I am going there.

one. He washes the big pots and pans that do not fit in the dishwasher // two. He stops what he is doing to hang pictures on the wall for me // three. He calls me every night before he comes home from work to see if I need anything // four. He snuggles me when I am sick // five. He agreed to paint my toenails because I have a big ol' basketball in the way that makes it quite uncomfortable to bend over // six. He doesn't mind that I have to have the humidifier on at night to sleep even though he hates it // seven. He doesn't get mad when I crawl out of bed four times a night to pee // eight. He always drives when we go on road trips so I can sleep // nine. He loves candy just as much as I do // ten. He [hesitantly] lets me share his drinks [as long as it isn't milk] // eleven. He doesn't yell too bad when I fold his laundry different than he likes it [have you met my O.C.D husband?] // twelve. He randomly brings me home lunch just because // thirteen. He doesn't laugh when I ask him silly math problems [like 7 times 3...yep, it happens] // fourteen. He rearranges furniture for me even when I make him change it a week later // fifteen. He gives me back rubs after only a little begging // sixteen. He is the most patient guy ever // seventeen. He puts up with me badgering him about school // eighteen.  He doesn't get angry when I don't make him dinner // nineteen. He watches chick flicks with me and doesn't complain too much // twenty. He still tells me he thinks I am pretty even though I am a swollen, cranky pregnant woman // twenty-one. He lets me choose where we eat out // twenty-two. He lets me sit in the comfiest spot on the couch // twenty-three. He drags the garbage out early Friday morning so I don't have to // twenty-four. He lets me control the radio in the car [usually meaning no radio on at all] // twenty-five. AND FINALLY...he loves me even when I make up really long, really cheesy reasons why I love him.

***

In other news, little baby Maycie is finally growing. We are crossing our fingers that she is catching up to where she is suppose to be. At our first ultrasound, Maycie was measuring two and a half weeks behind where she should have been. But all of the sudden my belly popped out in epic proportions. I will prove it. 

Can I just tell you how awkward it is taking a belly picture in the mirror with your cell phone? Awkward, I tell you. Do you smile? Do you wave? Thumbs up? Do I look in the mirror? Look down? Gosh...who knows. Thus, the awkwardness. 

Tomorrow we have our second appointment with our specialist, Dr. Draper, first thing in the morning. Really, first thing. 7am sharp. Yuck. But we are anxiously awaiting a fifth view of our sweet baby girl.

And not to mention I have another long list of questions just waiting to be answered. Last week we learned that Jake and I both have a normal set of chromosomes. This means little Maycie definitely has some sort of abnormality in her DNA. What that abnormality might be is still up in the air. Our regular doctor, Dr. Cox, suggested waiting until Maycie is born to do any further genetic testing to see what her abnormality might be. We are anxious to hear if Dr. Draper agrees with this. Unfortunately, this would mean we would head into the delivery room with a lot more unknowns than we want.  

It's not so fun going day to day without answers. But we are dealing. We hope to have a few answers given to us tomorrow. Cross your fingers for us. 

Quick Update...

Yesterday I received a call from the receptionist at our doctor's office stating that Dr. Cox wanted to see Jake and I right away. Needless to say, I panicked. It didn't help that Jake was in class and completely unreachable. After about an hour, I was finally able to get through to him. I left work in a hurry and headed to the hospital, full of dread. I kept thinking that if it was good news they could have told me over the phone.

Well, it wasn't good news. But it wasn't exactly bad news either. Our doctor explained that Maycie has an "unusual pericentromeric region on one of her chromosome 3 homologue." Uh, okay... thanks doc!

You better believe I came home to look at a stinkin' picture of a chromosome!

See the circle in the middle called the centromere? Well, on one of Maycie's 46 chromosomes her "little circle" is abnormal.

Dr. Cox sent us straight away to another part of the hospital where Jake and I both gave blood for genetic testing. If either of our tests come back with this same abnormal "circle", Maycie has a high chance of not having any chromosome issues. If our tests come back without this abnormality in either of our DNA, then Maycie will have a chromosome abnormality. What that abnormality might be is completely and totally up in the air at this point. If this is the case, we will do more testing...

Guess what that means? We just entered the second stage of the all too familier "waiting game". Yay us.

Little Baby Maycie...

This post was a hard one for me to write. Avoidance is much easier than confrontation. Our little girl is always on my mind. Our little Maycie. But sometimes it is much easier just to pretend she has a healthy little body than deal with the truth of her complications.

Our appointment on Friday did not bring the good news we were hoping for. Unfortunately, our amniocentesis results were not in so we did not get to learn the chromosomal issues Maycie may have. They think the results will be in by Tuesday but we may have to wait until our next appointment [Sept. 11th] to learn the results. But even without the results, we were anxious to meet our new doctor and have our million questions [really... I had two full typed pages] finally answered.

Dr. Draper is amazing. We are so grateful to have him as our doctor. He answered almost every question on my list before I even had a chance to ask them. It is very comforting to have someone who believes the same things we do and who holds the priesthood assist us in bringing our little girl here safely. And we were relieved to learn he travels to Pocatello twice a month to see his patients in this area. This means Jake and I will have less traveling time during the pregnancy which is a huge blessing to us. We will meet with him when he is in town for regular ultrasounds to check Maycie's growth. We will also meet with our original doctor, Dr. Cox, for regular pregnancy issues every month. We will only travel to Salt Lake to meet with Maycie's cardiologist [heart issues are very likely], her plastic surgeon, and her pediatric surgeon. Goodness, she isn't even born yet and already has a huge team on her side!

Dr. Draper is definitely a straight shooter [which is a blessing and a curse]. He began by explaining the possible outcomes that may occur throughout our pregnancy, especially if Maycie has any chromosomal issues. This was hard for Jake and I to hear. After a few minutes of daunting news, I finally asked him to discuss what we knew for sure rather than the possibilities. He was so sweet and agreed to only discuss these possibilities if I asked him specifically. I know these topics have a high chance of being in our future, but sometimes you can only handle so much at a time.

Even without the amnio results, there are a few facts we know for sure.  Maycie has a cleft lip as well as a cleft palate. This is a very common birth defect and can be fixed with great results. But it means even more surgeries for our little girl. Her cleft lip is very severe and occurs on both sides of her upper lip. Dr. Draper did mention the middle part of her top lip is full [a gift straight from her daddy] and he thinks this will help in producing minimal scarring. Usually cleft palates are not diagnosed so early in pregnancy, but Maycie finally gave us a front shot of her face and Dr. Draper said he was able to see clearly that it was present. The surgeries to fix these problems will not occur until Maycie is several months old [meaning even more hospital time for our little girl].

He also informed us her omphalocele is much bigger than we were originally lead to believe. They actually call it a "giant omphalocole". Not only are her intestines outside of her abdomen, her stomach, liver, and other internal organs are in the omphalocele as well. This was hard to hear. It is much more serious than if it were just her intestines as we originally thought. Basically this means more surgery, more hospital time, and a higher risk of complications during delivery. There are several other factors that contribute to her omphalocele's "scariness" but we are trying to stay positive and not dwell on them.

Right now we are working on staying optimistic. It is frustrating not to have every piece of the puzzle filled in. But we are trying to count our blessings. For one, we get to see our sweet little girl almost every two weeks. Not many pregnant mothers get to say that. And goodness, she shows off a little more each time. We love it. We also have a huge support team behind us. Sometimes I wonder how people make it through trials without family. Jake and I both are pretty dang blessed with good ones! Another blessing is our new doctor. He concluded our first meeting by reminding us that families are forever [which is a huge blessing itself]. I can already tell he cares for us and will do whatever he can to make sure we get to hold our little Maycie.

Again, we appreciate your thoughtful comments and prayers on our behalf. You have no idea how much your prayers have touched our lives. Please know your phone calls and texts also mean the world to me. I apologize if I do not get back to each of you. Sometimes it is just easier to write down [thanks to the blog] rather than speak about Maycie's issues out loud. But please know your words are not lost on us.

Thankful...

Little things like this make our "waiting game" a tad more bearable.

(Brookie is our five year old niece.)

Again, thank you all for your thoughts and prayers. We are forever grateful.

The Waiting Game...

First off, I want to thank each and every one of you for your kind words of encouragement and sweet, sweet prayers for our little girl. They mean the world to us. And believe you me, we have felt your love and support.

The last two days have brought with them a whirlwind of emotions. When dealing with the unknown, it is hard not to let your mind wander. We think the worst, but hope for the best. We are now praying the next 7 days go by quickly. We have at least a million questions for our new doctor and we are (im)patiently waiting to meet him.

Today we went for our amniocentesis. It was nerve-wracking to say the least. But we were able to see our sweet little baby girl again. It's funny how one glimpse of her can immediately push away our fears.

She was a little goof again today. I didn't feel her move all morning long. But as soon as our tech applied pressure for the ultrasound, she was kicking and waving her little arms around like crazy. She hates that stupid thing.

She was moving so much, I got a little worried she would move right into the needle. But, my goodness, as soon as the needle entered her little home, she went perfectly still. She didn't even move an inch. It's so fun [and therapeutic] to see her little spirit and personality already so strong.

Our doctor asked if we had any questions and I had to laugh. Nope Doc, can't think of anything! The biggest question on my mind dealt with her omphalocele. After hours and hours of research, we have found there are several levels of severity with this condition. Sometimes the little baby's entire insides can grow on the outside [like the liver, spleen, intestines, etc]. This is the one thing we were praying against. Our prayers were answered today when our doctor said he was pretty positive the only organ outside of baby girl's belly is her intestines. The recovery is still long and hard, but it requires less surgery. We were also worried about her little heart. Apparently, babies with her condition have severe heart problems. We don't know 100% on this, but her little heart seems to be healthy at this point.  This is great news and it was exactly what we needed to hear today.

After hearing this, Jake and I both felt a new level of peace in our situation. We even took a moment to sit and feel baby girl kick. She makes us laugh, which is exactly what we need.

We still don't have answers on her cleft lip, or the chromosomal issues that may be present. But we are taking one day at a time. Well, we are trying at least.

We know the calmness we have felt today is an answer to the fasting and praying you all have done for us. We greatly appreciate each and every one of you.

We are probably in for more than we know, but today we are calm. Today we are happy. And today we are finally taking a moment to enjoy the news that we have a little girl in our future.

The Unknown...

I didn't want to be a mother just yet. I thought we had years to prepare. Even with the news of our pregnancy, I was still hesitant. But do you know what can change a hesitant mind? One look at our beautiful baby. She was putting on quite a show too. Yep, you read that right. She. Her. Our little girl. She hated the pressure of the ultrasound and let us know it at once. Goodness, she was kicking her long little legs like never before. And when the tech wanted to see her spine, she twisted and curled so it was impossible. Then we moved to her tiny face. She tucked her little chin down so it was near impossible to see her profile. She was irritated at us for spying on her. She even took both her little feet and gave us a big "horse hind legs" kick, as if to say "leave me the heck alone". She made me laugh. And cry. She's stubborn, just like her Mama. She finished the ultrasound by giving us a cute five-fingered wave. Melted her Mama's heart.

Walking out of the ultrasound, I felt so excited. I wanted a little girl. I hoped for a little girl. I even secretly prayed for a little girl. So I felt so guilty when a little wave of dread came over me. Jake and I sat down and I asked if he noticed something "goofy looking" on her little tiny belly. We both brushed it off thinking it was nothing. Then we waited for our doctor for at least 45 minutes. My dread grew with every minute. And then I felt guilty. Guilty I wasn't feeling as giddy as I thought I should. Guilty that I let my mind wander to the worst case scenarios. 

So when our doctor uttered the words signifying our little girl had a few complications, I wasn't shocked. I knew it was coming. I prayed it wasn't, but prepared myself for the worst. But it still hurt. 

He explained our little girl has what is called an Omphalocele. Basically, her little tiny intestines are growing outside of her belly. This was the small "ball" I was seeing on her belly. Jake says it looks like she is holding a basketball. If only it were that simple...

The poor little thing also looks as if she will have a cleft lip. Because of her stubbornness during the ultrasound, we are not 100% sure on this. But our doctor feels pretty confident. 

And to add on to our shock, more complications are most likely to be present. Chromosomal issues are very likely [her omphalocele is a major sign of this]. Several issues could be present but our doctor mentioned specifically Spina Bifida or Down Syndrome. We just don't know. We have an amniocentesis scheduled for Friday. This will give us a clear idea of the chromosomal issues we may be dealing with.

Either way, our sweet little girl is in for a tough beginning. 

We will no longer meet with our doctor who has been so good to us. Instead, we will go to a specialist at the University of Utah who deals specifically with high risk pregnancies like ours. Our first meeting with him will be on the 31st. He will do another ultrasound to get a better look at what we are dealing with and we hope to have the results of our amniocentesis at this point to give us details on her chromosomal issues. 

She will also be delivered at the Primary Children's Hospital in Salt Lake so they can immediately begin the long fight to fix her omphalocele. And deal with the other issues she may have. 

We are shocked. We are hurt. And we are scared. The worst is dealing with the unknown.

Our little girl has been mobile all day long, which is unlike her. She is constantly kicking me. It's as if she is giving me a little nudge to remind us she is still there. In her own way, she is already comforting us as we deal with our shock and greif. 

At this point we are fasting and praying that her only issue will be her omphalocele. There is a small glimmer of hope that this is the case. It's small; but it's hope. 

We have asked our families to join us in a fast tomorrow. We are fasting for good news on our amniocentesis. We are fasting for our pregnancy to continue with no further complications arising. And we are fasting that Jake and I can have the strength, courage, and faith to raise our sweet special baby if it be the Lord's will.

Please join us in our fast if you are able. If not, please keep our sweet little girl in your prayers. We would greatly appreciate your love and support as we head into the unknown.