Maycie's Day...

We love Memorial Day, although we like to call it Maycie's Day. Tyse was a little shy of 3 weeks old when he got to see his sister's "heart" [as Zayne calls it] for the first time. It was fun to have us all together! It was excruciatingly hot at the cemetery that day so poor little Tyse didn't really enjoy it all that much.

[our angel baby]

 [family photo]

 [tyse was so mad at his dad for making the sun be in his eyes]

 [grandpa, auntie, and cousins putting the flowers around maycie's heart]

 [schwartz grandkids with grandma and gramps]

 [tyse was fine as long as jake blocked the sun from his face]

We love little Maycie!

A Day to Remember...

On the night of May 5th, Jake and I barely slept a wink. We were both anxious and nervous for 6:30am to arrive so we could make our way to the hospital for our 7:45am delivery time. After what seemed like 10 minutes of sleep, I woke up to my phone ringing. Apparently, the hospital messed up our prep time and we were supposed to be there at 5:30am. So we hurried and jumped out of bed and made it to the hospital in record time. I was immediately prepped and wheeled to the operating room. Although we felt a little rushed, it was actually great because we didn't have time to get nervous.

Funny story...all morning I was complaining to Jake that the baby was moving around too much and it was hurting me. It was so uncomfortable. Right before I was taken into the operating room, Dr. Cox came in to talk with me. I told him I was ready because the little guy was making me super uncomfortable with his movements. Dr. Cox looked at me funny and said, "Um, you're uncomfortable because you're in labor, Katie. You're having contractions." Whoops. Good thing I was scheduled for a c-section because I would have never known I was in labor.

I think hospitals purposely make the operating rooms freezing cold and completely frightening. Seriously, I was shaking so bad - not from nerves [well, maybe a little], but from the absolute below freezing temperature in the room. And shaking paired with a gigantic needle being pierced into your spine is not a good combination. Dr. Cox and a nurse had to come and hold me still while the anesthesiologist gave me my spinal tap.

The worst part about the c-section is the time before the surgery starts...Jake is not allowed in the room until that have pretty much already started the process. So I am always a little nervous without him. But luckily, this time I had my favorite doctor to keep me company and my anesthesiologist was super friendly too.

I cannot even begin to tell you how much easier this c-section was compared to my first. I knew what to expect so I was a lot more calm. I was also able to ask for nausea medicine before I actually got too sick so I didn't throw up this time [yahoo!]. And Jake knew to not give me a play by play like he did with Maycie...the boy learned from his mistakes! And to be honest, I think my spinal tap worked a little too well with Maycie because I was honestly numb from my chin down, which made it feel like I could not breathe at all. I was panicking the entire surgery. That didn't happen this time. I could go on and on about the differences but let's just say this time was MUCH, MUCH better. I credit this to the fact that it was not an emergency situation so the doctors were able to take their own sweet little time.

It didn't take long for my little man to arrive. He was born at 7:13am, about 10 minutes after the surgery began. He was 6 pounds 6 ounces and 19 inches long.  I remember Dr. Cox calling across the curtain to me staying how beautiful our little guy was. I am sure he says that to everyone but it was neat to hear him say it. He knew I needed reassurance throughout the entire surgery given our history so he talked to me often. He then lifted little Tyson over the curtain for me to get the first glimpse of him. He looked so angry at us, but was so so cute at the same time. He didn't immediately breathe though so the nurses had to take him quickly to help him. That first little cry was amazing...we didn't get to hear that with sweet Maycie. I, of course, started bawling so I couldn't see anything because I wasn't allowed to move my arms to wipe my eyes. Jake came to my rescue though and brought my little buddy over for a quick kiss before he was taken out of the operating room for tests. Jake went with our little man so I was again left alone.

After I was stitched up [They used stitches this time instead of staples. Again, SO much better!] I was taken into the recovery room for what seemed like an eternity. I think it was only about an hour....still, it was a very LONG time for a new momma. I was anxious to hold my baby though so I was getting agitated that the nurse wasn't taking me to my room.

I was finally taken to our room but Jake and the baby were not even there yet! Apparently they were waiting in another room for me. We eventually found each other and I was FINALLY able to hold our little man. He was so sweet and wide eyed. It was then that we finally settled on his name. We had three names that I kept going back and forth between, although I was always pretty sure it would be Tyson Nolan. I have had this name picked out since I was about 8 years old...I even have it written in one of my first little journals.

That day we had LOTS of visitors and we loved it! We are pretty proud of little Tyse and we loved showing him off to our families.

We spent two nights in the hospital and although it was super nice to send Tyse to the nursery so we could get a little sleep, we were beyond ready to go home.

Bringing Tyson into our home has brought such a sweet spirit to us. We are so grateful to be blessed with both a sweet spirit in our home and one waiting for us in heaven. I love my little family so much and am so grateful for a healthy baby boy!

For more pictures of Tyson's birth, click here.

Sometimes / Then / So...

Sometimes I tell the husband I am no longer a blogger / then he tells me I am stupid / so I am a blogger again.

Sometimes I beg the husband for a dog / then I find out I am allergic / so I have to sell my new snuggle buddy.

Sometimes we plant grass / then it grows / so we buy a new garage door to celebrate.

Sometimes I wait and wait and wait for little Miss Maycie to get her headstone / then we get the family together to celebrate / so M sends down a rainbow to say hello.

Sometimes I turn 24 / then my husband decides to spoil me / so we fly to Vegas for a week.

Sometimes I take a three month break from blogging / then it is way too hard to get back into it / so I am going to play catch up the best I can over the next few weeks.

Stay Tuned!

Chubby Fingers...

Happy three month birthday Maycie Girl. We love you Angel Baby!

[my favorite chubby little fingers]

Thinking of you always, 

Momma

Excuse me, but it has to be said...

Yesterday one of my best friends from high school slash college roommate stopped by the hotel to say hello. I have not seen her in years [well, she did visit at the hospital after Maycie was born but let's be honest...I was heavily medicated and don't remember a thing]. It was so good to see her and we talked like not even a second had passed since we had been together. She brought with her her adorable little boy who just tugged at my heartstrings. He, like little Maycie, was born with complicated health issues.

Our short conversation was mainly focused on our special little children. We talked about the hospital, the nurses, the NICU, and everything in between. And my favorite part? Somebody finally understood me and was comfortable holding a conversation with me about little Maycie.

The most common question I am asked is "How do you do it? How do you get through the day?" My friend said she gets the same question concerning her little boy and his serious health problems. And it was just so good to have someone understand what I meant when I said, "Well, it is what it is. You just deal."

I admit it. My pregnancy was hard. My delivery was hard. Losing Maycie was tremendously hard. Is hard. And just recently [as in this week] I have been able to make it through the day without crying. But there is still not a second that goes by in a day when I am not thinking about Maycie. I wake up in the morning and think...I should hear my baby crying.  I talk to a client at work and think...I should be at home with my baby. I drive in the car and think...I should have my baby in the backseat. It is never-ending. But...I just deal. I have to.

//

Going back to work so close to Maycie's passing has been hard [but therapeutic at exactly the same time]. Mainly because the last time I was there, I was pregnant. And not many of my co-workers and regular guests are aware of Maycie's passing. So I get a lot of "How's the baby?" which, believe me, I prepared myself for. I even came up with a quick response I could pull out when needed. But the awkward stumbling for words after my "quick response" is still hard to get used to.

I understand the fact that people don't know what to say to me. Sometimes I bring up little Maycie in casual conversations [she's my little girl...I am allowed to talk about her] and my statement is followed by uncomfortable silence. I get it. I understand. I would be the same way if the situation was reversed. But please don't feel uncomfortable. Jake and I are trying to heal. And our healing process is unquestionably fueled by surrounding ourselves with co-workers, good friends, and family. If you're uncomfortable talking to us, we can tell. And we don't want you to be. So don't be. Understood?

I mean, we are still the same people. I know infant death is a hard thing for people to comprehend and be comfortable talking about. But Jake and I...well, we have been blessed with a greater understanding since Maycie passed. And we know we will have a chance to raise our little angel baby one day. And that knowledge, plus talking about my little Maycie, gets me through the day. Again, we are the same people - so treat us that way.

Moral of this long, jumbled, and brutally honest post, you ask? Here you go. Please don't feel uncomfortable talking to me. Ever. Loosing my baby is extremely hard to say the least. But...I am dealing.

Our Sweet Angel Baby...

"The Lord takes many away even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again." - Prophet Joseph Smith

Today is the scheduled day Maycie was supposed to be born. 
In her memory, I decided it was time to recap her birth story.

//

On Tuesday, December 11th, I met with my doctor for my weekly appointment. I mentioned I felt decreased movement from little Maycie. I was sent over for a stress test to monitor her heart rate. The test came back "just okay". My doctor decided to see me the following day for an ultrasound and a follow-up stress test.  On Wednesday, December 12th, I had a 9:30am ultrasound [I think it was about our 20th ultrasound...we lost count]. By 9:35, my tech made the decision Maycie needed to be delivered that day. Her amniotic fluid was almost nonexistent. My doctor sent me home for one hour to pack a bag and shower and then I needed to go back to the hospital for the stress test before heading to Salt Lake.  Maycie's heart rate fluctuated way to much. At one point it went from 70 bpm all the way up to 180 bpm in a matter of seconds. But the little fighter corrected herself as much as she could.

[Last baby bump picture taken right before delivery in the UUMC bathroom]

The drive to SLC was never ending. Jake and I couldn't wait to meet our little girl but we were also very nervous to deliver at 35 weeks [especially because our doctor, Dr. Draper, was at a medical conference in South Africa]. Once we arrived, I was immediately set up on machines to monitor Maycie's heart. At one point, we had about 6 doctors rush into our room and tell us they needed to take me NOW. I had to hurry and sign some consent forms while they started to wheel my bed away. My heart dropped. This was not the way I had imagined meeting my little girl. But Maycie fought once more and was able to correct her heart rate just in time. It was a very scary 60 seconds. The doctors were able to slow down and catch their breath which made the situation a little less scary for Jake and I. We were taken into the delivery room about 20 minutes later. Maycie was born at 7:44pm. She weighted 3 lbs 3 oz and was 16 inches long.

The actual delivery went quite quick. Jake insisted on watching the whole procedure. Makes me queasy just thinking about it. I kept begging him to sit down next to me, which he did. But then I would catch him sneaking back up to watch. Silly boy. There were a few complications with the closure and I had quite the "fun" reactions to the medication [I am sure the nurses got awfully sick of me throwing up on them]. But through it all, I just wanted to meet my little girl.

In the delivery room, there is a small window straight into the NICU at University of Utah. Right when they delivered Maycie, she was transfered through the "window". I didn't get to see her at this point. One of the reasons for this was Maycie's omphalocele ruptured upon delivery. Oringinally, her "O" was surrounded by a membrane that concealed her organs. For whatever reason, the membrane broke and exposed her organs upon delivery. Her "O" became even more life threatening at this point.

Once she was taken through the window, her doctors wrapped her omphalocele the best they could so she could be safely transported to Primary Children's. PCMC actually sent a life flight team over to pick up Maycie. They even gave her a cute little t-shirt showing she had been life flighted, even though they just wheeled her down a small hallway to PCMC. On their way to Primary's, the life flight team stopped in my room so I could meet my little girl. I can't express the feelings I had at that moment. Her abnormalities were very apparent, but she was beautiful. Perfect in every way. This visit with my little girl was extremely short because Maycie needed the medical attention Primary's offered.

[Meeting Maycie during her "life flight". I couldn't move from my spinal tap so Jake had to hold me up.]

Jake followed Maycie to PCMC while I was taken to my room. The next several hours dragged on forever. I wanted to be with my sweet baby girl, but due to my spinal tap [and...you know...being sliced in half], I was told I would have to wait 12 hours before I could make the trip to Primary's.

Around midnight [about 4 hours after delivery] Jake called me and gave me devastating news. The doctors thought there was a very good chance Maycie would not make it through the night. I was heartbroken. I could not believe my little girl might pass away with me only seeing her for 5 minutes. But that night I was extremely blessed with two amazing nurses who "fibbed" on my charts stating I was in better medical condition than I actually was. Due to their kindness, I was able to make it to PCMC around 3:30am to see Maycie. I will never forget their compassion in that situation.

To see Maycie in the NICU with her daddy holding her tiny hand was heartbreaking and breathtaking at exactly the same time. Her tiny body was covered in medical equipment. But her little spirit was so apparent underneath all of the tubes and needles. All I wanted to do was reach out, hold her in my arms, and take all of her pain away.

The next day [or later that day, I guess] I was able to take my parents, my sister Kim, and my brother Alan and his wife into the NICU to meet little Maycie. I kept imagining how their meeting would have been so different if Maycie was healthy. But I will never regret the closeness I felt with my family members as we stood next to Maycie's hospital bed.

[My daddy wheeling me to see baby Maycie]

Each visit I made to the NICU that day was filled with new information from several doctors who never left Maycie's side. And each time I received even more devastating news. My little girl was sedated, but still felt pain. This fact caused me more pain and hurt than I can even describe.

By the end of that day, it was apparent our little Maycie would not survive her many complications. The several machines attached to her and the many medications given were the only things keeping our little girl here on earth. Because of this, Jake and I had to make the decision to let our little Maycie return to her Heavenly Father. As I look back, I know Jake and I were both being "comforted" at that time. It was the hardest decision we would ever have to make, but we both knew it was the right one.

Jake's parents arrived at the hospital around midnight to meet Maycie Laine before her ventilator was turned off. Once they arrived, Maycie's team of doctors moved her into a private room where we could finally hold our little girl. I cannot begin to describe the feelings I had when our sweet little girl was placed in my arms. I have never felt closer to heaven than I did at that moment.

Jake and his dad were able to give little M a blessing before she passed. It was such an amazing experience and I will forever cherish the feelings I felt as I watched Jake hold his little girl in his arms at that moment.

Being in that room with my little girl while she passed was the most painful and most comforting experience I have ever had. Time passed slowly and quickly at exactly the same time. Little Maycie Laine Schwartz returned to her heavenly home at 6am on 12.14.12 -- about 36 hours after birth.

I am so grateful for every single one of the people who were there that night helping Maycie pass with the least amount of pain possible. I am grateful for each of their sweet comments. I am grateful for the little memorabilia they gifted us with. I am grateful for the professional photographer who captured our first and last moments of holding our little girl [can't wait to see them]. I am just so grateful.

//

Maycie's tiny little body was laid to rest in Malta on 12.21.12, one week after she passed. We held a small graveside funeral surrounded by our closest family members. Maycie's Grandpa Schwartz gave an opening prayer and her Grandpa Branch gave the dedicatory prayer. Her daddy said a few words as well. It was short and perfectly sweet -- just like her life on this earth. 

[Maycie Laine's 19 inch casket. So little.]

[Some of Maycie's things the hospital gave us. Her little hand cast is my favorite. And her headband...it fits on my wrist]

//

Thank you all for the love and support you have offered us. I cannot begin to express our gratitude. The outpouring of support we have received - both emotionally and financially - has been overwhelming. Jake and I will forever be grateful for each and every one of you.  

To Maycie, Love Us...

When we got home from the hospital, we were surprised with sweet messages from our nieces and nephews to their cousin [and niece...can't forget Auntie Marie] Maycie. Each message was attached to a white balloon and each one made me cry. Kids say the most comforting things without even trying...

//

//

Me love you baby Maycie a very lot. 

- Jace [age 4]

I love you and Maycie. I think she has the cutest name. 

- Olivia [age 6]

I asked Zayne what he would tell little Maycie and he said "nuffing". But then he sparked up when I told him Maycie is with Jesus, and he said he would ask her for a toy. 

-Zayne [with help from his mommy] [age 3]

I love you! 

-Luke [age 2]

I want you to know how much I love you. I am thankful that families are forever. 

-Madelyn [age 9]

I love you! I can't wait until the three little girls [Marlee, Chloe, and Maycie] are reunited once again. 

-Chloe [age 1]

I love you, Maycie. I think you would be cute if I could see you. I wish I could see you. Do you like it up in heaven? Is it pretty there? I bet you look so pretty in Heaven. 

-Brynlee [age 6]

I love you. I wish you could be with me. You are the best Christmas present I didn't get to keep. 

-Aunt Marie [age 10]

I want to give you my crocheted hat and make you a craft. If I could talk to you I would tell you that I love you, and you are so cute. 

-Brooke [age 6]

Maycie, I can't wait to see you again. 

-Marlee [age 6 months]

To my Sweet Baby Maycie...

To my sweet baby Maycie:

Today Daddy and I had to say goodbye to you for the very last time. Your daddy carried your casket all by himself. You are so tiny. It was hard for me to see just how small your casket was. I just couldn't stop picturing your tiny, tiny body [3 lbs 3 oz, 16in long] resting in such a tiny, tiny casket. You wore a pretty white dress. It was the smallest one Grandma Schwartz could find for you, but it still had to be pinned back to fit. And it just happened to be the same dress most of your Branch cousins wore when they were blessed. So special.

Maycie, I miss you. I miss feeling you kick. I miss feeling you have the hiccups. I miss feeling you jab my ribs [even though I cussed you for doing this].

But even more? I miss holding you in my arms. Because your body had so many "ouchies", we only got to hold you for a short time before you passed. But those few hours meant the world to me. Your skin was so soft and the perfect shade of pink. You had the most chubby little hands. Your fingers were my favorite. Short and stubby. So, so adorable. You couldn't even wrap your fingers completely around one of mine. Your cheeks were just the right amount of chubby [you got those from me, you know. Except yours were much, much cuter]. I could kiss them forever. And your hair...where did you get that from? You had so much dark brown hair that the nurses were able to put a perfect little curl on the top of your head. They gave you a pretty white headband too. It fits on my wrist. I just can't get over how small you are.

You may be small, but you made such a huge impact on your daddy and I. I don't think either of us realized just how much love we would have for you. Not only that, but you made us realize just how much we love each other. You are so lucky to have your daddy. He is so patient. So loving. I don't think I could make it through losing you without him wiping away my tears.

I will never forget the glow you had when I first saw you. Your spirit was so strong. I can't even imagine what a strong daughter of God you must be to have chosen to come to earth for such a short amount of time, knowing you would be in terrible pain the entire time you were here. Your Heavenly Father must be so proud of you. I know your daddy and I couldn't be prouder.

Thank you for letting us be your parents. Thank you for showing us a new level of love. Thank you for making me realize just how lucky we are to have the gospel in our lives. I don't know if I could handle losing you if I didn't know I would see you again. I cannot wait for that day.

Until then, be a good girl. Give your cousin Macsen a kiss for us. Take care of your siblings. Watch over your grandparents, aunts and uncles, and cousins; they love you so much. Learn as much as you can so you can teach me when I finally get to hold you in my arms again.

I love you Maycie Laine. I cannot wait for the day when I can kiss your chubby cheeks and hold your tiny, tiny hand again.

Sweet dreams Maycie girl.

Love,
Momma

And The Results Are In...

NO BABY THIS WEEK! 

[whew]

Maycie's numbers look good today! We will now just take it one week at a time.

Next Appointments: December 11th and December 18th

Bulleted Appointment...

My mind is jumbled. So. Much. Information. 

Bullet points seem to be the only logical way to un-jumble the jumble. Bear with me. 

• Maycie's official birthday is scheduled for January 3rd, 2013. 1-3-13. Fun, right? This would put us at about 38 weeks. But [I am so sick of "buts"] the chances of our stubborn little girl staying in her cozy [albiet stretched to the max] home until this date are slim. 

• Basically Miss M is not receiving the nutrients she needs from the umbilical cord. This is probably due to the fact that the cord does not enter the abdomen like it should. It is attached to the sac that surrounds M's "O". [If you haven't guessed, this means M will not have a belly button. Her belly button will be cosmetically made after her closure surgery.] Medically speaking, her numbers should be below a 3. M is at 3.8. 4 is...well, scary. Now don't ask me what this number is measuring because I honestly don't remember. You try having all sorts of numbers and medical terms thrown at you in a matter of 30 minutes. It's slightly overwhelming. And terrifying.

• M also has fluid in the chambers of her itty bitty brain. Basically, this fluid is not properly draining through the tubes in her brain into her spine. This excess fluid could mean several different scenarios for little Miss M. She could possibly need an additional surgery to place a shunt to drain fluid after her birth. But it could also be nothing. We are praying for the nothing and ignoring the other possibilities as of now. 

• We have a follow-up appointment on Tuesday with Dr. Draper. If the fluid in her brain is still at the level it is and her umbilical cord is still failing her needs, there is a possibility we could have a baby...next week. The threat of delivering her at 34 weeks is smaller than the threat of leaving her in my belly if she continues to be in distress. BUT we want her little lungs to develop as much as possible so taking her that early is our last resort. 

• Baby M is breech. Little stink. But to be honest, we don't care. We are having a c-section anyway. 

• My favorite part? Maycie apparently has a TON of hair. Let's just hope she isn't a redhead like her Mama. Poor girl already has enough problems. Kidding, kidding. Sorta. 

Right now we are just hoping Maycie will stick it out until at least Jake is done with finals. But we are trying to prepare ourselves for the unexpected. 

Next Appointments: December 4th and December 11th - if we make it until then! 

"Maycie's Day Parade" of Doctors // The Timeline...

Prepare for an overload of information and medical terms. Longest. Post. Ever. You've been warned. 

*While researching, I have been frustrated with the lack of information available to me. Then I found the blogs of fellow "O" [omphalocele] mothers. They have been such a comfort to me. I hope my blog may be a comfort to another mother facing such frustrations. Because of this, I am going to try to be very detailed when I talk about Maycie's medical conditions. I apologize if the details become graphic. Please bear with me and feel free to skim if you aren't interested in the medical trials we are facing. I wont be offended. Promise. 

6:30am // Jake and I pulled ourselves out of bed after about three hours of sleep. We aren't the best sleepers when stress and anticipation join us between the sheets.

7:00am // We hit the road with chocolate milk for Jake and doughnuts for me. Perfect hearty meal for a long day, right? I mostly slept [restlessly] while Jake did the driving. I think Jake secretly likes when I sleep on road trips because that means he can listen to the radio. I have this weird aversion to music in the car...don't ask.

9:40am // We arrived at the University of Utah hospital and gave ourselves a lovely driving tour while grumbling over where the heck we were suppose to park. Hospitals are confusing. After about 15 minutes, we finally found a spot.

10:15am // We made our way to the Maternal Fetal Diagnostic Center at the UUMC for our first appointment for the day - an ultrasound to check on little baby girl. It has been quite the experience for us to see how much she grows in between each appointment. If I am counting correctly, I believe this was our 7th ultrasound. And Maycie hated it just as much at the rest of them. We didn't get to see her face because her legs were in the way.  She kept tapping her forehead with her big toe. She sure made us laugh. And her little hands were right behind her tiny baby bum waving away. [This was great to see because most infants with severe chromosomal issues that involve mental abnormalities keep their hands clenched in fists. Maycie has always been a waver.] She is growing strong but we cannot get an accurate measurement on her because of her omphalocele. Most babies are measured by the size of their abdomen. The size of Maycie's abdomen is not accurate because her little organs are in the wrong spot.

11:30am // We rushed [seriously...we basically had to run to make it on time] over to Primary Children's for our next appointment at the pediatric surgeons office. This appointment was somewhat...frustrating. We were hoping to meet with the exact surgeon who would work with Maycie and hear his exact analysis of her "O". This didn't happen. Instead, we met one of the seven surgeons who might be on call when M will need surgery. We were slightly bummed. We were even more bummed when he didn't even look at the ultrasound pictures. Instead, he talked about different scenarios we might encounter. Don't get me wrong, he was a very nice guy and I kind of hope he will be the one to be M's surgeon. But with all of the research I have done, I was already familiar with most of the information he gave us. Although we did learn that PCMC does not like the "paint and wait" technique of fixing O's. This is where Maycie would come home  after only a few weeks in the hospital without having surgery. I would then rub several different medications on her O to make skin grow on top of it. She would then have a closure surgery around one year of age. This is the most common procedure to fix giant O's because it is usually very safe. But the surgeons at PCMC prefer to do a "silo bag" approach. Basically, they will take M into the operating room when she is about a day old. They will surgically attach a "silo bag" to her O. Every day they will twist the top of the bag down [picture a tube of toothpaste] to push M's little organs inside her abdomen cavity. Then, when most of the organs are back where they belong, they will do the closure surgery. PCMC prefers this approach because the abdomen can grow to the size it should be while M is growing. With the paint and wait approach, although less invasive, the abdomen does not reach the size it needs to be for the closure surgery and the organs are kind of "stuffed" back in. This causes the internal anatomy of O babies to be compromised. [Imagine if Maycie would have to have her appendix removed when she is a teenager. If she did paint and wait, her appendix could be in an entirely different area than is should be because it was "stuffed" into too small of an abdomen.]

Jake asked about a timeline for coming home and the surgeon stated most O babies without other complications [keep in mind Maycie has several] stay at the hospital for at least two months. We are expecting M will be at the hospital for much longer than that [but praying for a shorter stay].

12:50pm // Our PS appointment ran very long. We had ten minutes to get to our next appointment, which meant we jumped in the shortest line in the cafeteria at UUMC [stale, bland pizza. Yummy. No wonder the line was short.] and ate without chewing.

1:00pm // We got cozy in a dark room while Maycie had an echocardiogram on her itty bitty heart. You better believe Jake and I both dozed off. The procedure took about an hour. Basically it is just another ultrasound but the tech only looks at the heart. She took about a million pictures while J and I napped. We then met with the cardiologist and received the first good news we have heard since M's diagnosis. She has a healthy heart with no apparent defects. Best. News. Ever. Now the echo cannot detect small holes or minuscule defects, but the cardiologist was pretty confident M's heart will be just fine. Whew. Like I have mentioned, O babies have heart abnormalities most of the time. So we are overjoyed with the news that M doesn't have to add this to her long list of "ouchies".

3:00pm // We met with the Craniofacial nurse for PCMC who specializes in cleft lips and palates. Again, she didn't look at M's ultrasound pictures (bummer) so we are not certain of the exact procedures that will happen. We know for sure M has a bilateral cleft lip [occurs on both sides of her mouth] but we do not know if it involves her nose [a complete bilateral cleft] or just the lip [an incomplete bilateral cleft].  We also don't know what is involved in the cleft palate. It could be just the soft palate [the back part of the roof of your mouth which is soft tissue], or just the hard palate [the front part of the roof of your mouth which is harder tissue], or both.

Either way, her lip will not be fixed until she is about 3 months old. We imagine we will still be at the hospital anyway. The palate will be fixed around her first birthday. And there will be several follow up surgeries throughout her childhood and teen years. Depending on the severity, M could have around 7-10 corrective surgeries on her clefts. Yikes.

4:00pm // Dr. Draper actually had to cancel our 4 o'clock appointment. We rescheduled for the end of this month. At that appointment, we will schedule Maycie's birthday! Dr. D did call us on our way home to chat for a minute. He is planning to schedule a c-section around two weeks before M's due date. It is not safe to deliver a baby with a giant O vaginally. Because of this, he does not want me to go into labor on my own. He also wants me to be in SLC at least 10 days before the scheduled delivery date to avoid me going into labor 2.5 hours away from the hospital.

4:30pm // We hit the freeway. Homeward bound!

Next appointments -- November 12th and 27th. 

Tiny Update...

Good News: Glucose test accomplished! And I didn't even gag. To be honest, it wasn't what I was expecting at all. I chugged that sugar like a pro.

Bad News: The results of our micro-array test are in. Well, I guess you could say they are results. Apparently my amniocentesis cells died before they had a chance to finish the testing. This basically means we will have to wait until little Maycie is born to test the abnormality on her chromosome three. This is frustrating on many levels - especially because we still have to pay for the stupid [expensive] test even though it wasn't completed. It also stinks because we [as in her doctors] really wanted to have a clear idea of what medical issues they will need to deal with immediately once the little stinker is born. Now there is a big cloud of "unknown" hanging over us. Well, an even bigger cloud than there already was.

Until tomorrow... [is it sad that I want to go to sleep right now so it will be here sooner?]

Coping...

Jake and I deal with our feelings quite different from each other. You see, I am a "wallow in self pity" kind of gal. Well, more like "wallow in self pity, then shed a few tears, then paint back on my face, then hit the ground internet running." I am a researcher. It's in my nature as a Literature geek. I choose a topic and then research incessantly until I become a "pro" of sorts. Little baby Maycie is my lastest obsession. Can you blame me? I've joined the groups, I've read the medical cases, and I've asked the questions. It is how I cope.

Jake, on the other hand, copes in an entirely different way. And I have to admit, I am loving his coping mechanism. He's a "stay busy and stay happy" kind of guy - which loosely translates into, "crossing off the honey-do list". Geesh, I love him. Here is a few of Jake's latest "coping" projects.

He's been fixing clogged pipes [did I mention we had to get a new water heater? Geesh, they're expensive]...

He's been climbing tall ladders...

He's been hiding all the awful green...

He's been de-rocking [and de-treeing...thanks goes out to Dad, Alan, and Spencer for the help] our lovely front yard...

Needless to say, our new house is really reaping the benefits of the whole "stay busy" aspect of Jake's coping. Thanks to it, we have a new front door, new shutters, painted trim, freshly (as in today) planted grass, trimmed trees, new electrical outlets, new basement sink...I think you get the idea. 

But the before and after pictures will have to wait - I have some brownies in the oven that are really calling my name. Oh, did I forget to mention my other coping mechanism is indulging in my lastest pinned recipe on Pinterest? Don't judge. I am eating for two, you know. 

[27 weeks. Yep, even more awkward mirror pictures.]

P.S. 11 days and counting until our big appointment in SLC. We are getting impatient. 

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.