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. 

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.

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.

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.