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.
