It's official: Lindsay is booked to fly into Denver on Monday, May 6th. She will be living in Loveland, with Ryan visiting on the weekends, until the surgery on the 22nd. Things are starting to click into place!
Our amazing nurse counselor called today to talk to us about our c-section date. Dr. Rothenberg, the baby's surgeon, will not be available for surgery on the 20th as originally planned. Dr. Porecco, the delivery doctor, will not be available on the 21st. So our new c-section date is Wednesday, May 22nd! Can't wait!! :)
Baby Elworthy has an omphalocele (pronounced Ohm-phall-uh-seal). In the first month or two of growth her abdominal wall didn't close properly, leaving a mass of intestine outside of her belly. Upon learning about her condition our life was almost turned on its head... complications are not part of the picture of a perfect pregnancy. If you have more questions about what an omphalocele is, check out http://omphalocele.net... it's a great resource kept updated by omphalocele parents.
After the abnormality was seen during our 20 week ultrasound in January, we started seeing a specialist from Denver, Dr. Porreco, when he came to Durango once a month. Through ultrasounds he has been able to keep tabs on the growth of the omphalocele and has reassured us that in the scale of omphaloceles, her's is relatively small... often times there are other organs trapped in the membrane outside the baby's belly, but that's not her case. We have also had genetic tests to rule out any other chromosomal issues such as Downs Syndrome, which are occasionally seen in omphalocele babies, and everything there came back normal. As we move into the third trimester of pregnancy, doctors appointments are starting to come fast and furious and we are finding out more and more about what our delivery and Baby's surgery is going to look like. Monday, March 4th we had an appointment in Denver at the Rocky Mountain Hospital for Children, where we will be delivering Baby through a scheduled C-Section. We met with Dr. Porreco first thing in the morning for another ultrasound to check in on Baby's growth. Thankfully not much had changed since he performed the last ultrasound in January. All of Baby's organs looked good: the brain was growing like it should, the heart was functioning properly, and there was proper blood flow to all the other organs. The omphalocele has remained relatively small-moderate sized (as opposed to a Giant Omphalocele which includes other organs). To avoid the risk of tearing the membrane that is protecting the intestine and to assure that the team of surgeons are all available to take care of Baby, we have scheduled a c-section delivery for Monday, May 20th. After giving birth, Lindsay will remain in the operating room to be stitched up while Baby and Ryan will go down the hall to Pediatric Surgery with Dr. Rothenberg. Dr. Rothenberg met with us as well on the 4th and talked about all the possibilities of how he will get the intestine back inside Baby. Best case, he will make one little incision, tuck the intestine back into place, stitch together the abdominal muscles and then stitch together the skin. Easy. Another option based on the size of her omphalocele, is that the abdominal muscles may not be big enough to close over the newly placed intestine, so he'd stitch the skin over as protection while the abdominal muscles grow and stretch. Once there is enough material, he will go back in to stitch her muscles closed, and then her skin. Because the mass of intestine is protruding from where the umbilical cord enters Baby's belly, part of the surgery will be hand crafting a little belly button for her. Dr. Rothenberg assures us he is pretty good at forming belly buttons. :) Once Baby's surgery is complete, she will remain in NICU for an undetermined length of time. Because the intestines have not been fit to her abdomen naturally, she needs to be monitored to make sure the digestive tract is working properly before she is sent home. While in NICU she will be on an intravenous feeding tube (that will be delivering fats, sugars, and proteins for nutrition), a tube inserted into her belly to remove bile (since she will be unable to pass it naturally), and possibly a ventilator or oxygen tube (depending on how well her lungs are functioning). Once the doctors determine that her stomach is ready to be introduced to breast milk, she will get a tiny bit bottle fed to her. They will monitor how her system reacts to the milk. Once she proves to process it properly, they will introduce a bit more. Slowly they will build her up to full feedings and wean her off the intravenous nutrition. This is the part of the recovery that they can't predict. It could take as little as 2 weeks for her system to begin working properly but it could take much longer. The doctors are recommending we plan on about 4 weeks... it could take a little more or less, but at least that gives us a ballpark estimate of time. Upon Baby's release from the hospital we will get to return to Durango! They anticipate a couple of follow up appointments in Denver over the rest of the summer, but beyond that, Baby isn't expected to have any side effects or lifelong symptoms of her surgery. The doctors are asking that Lindsay moves to the Denver area two weeks before the c-section, just to be in the neighborhood in case Baby decides to come early. She will be staying with family in Loveland and traveling to Denver once a week for check up appointments. After Lindsay is discharged from the hospital after recovering from her c-section, Baby will likely still be in NICU. We are still looking at all the options, but are strongly considering staying at the Ronald McDonald Home, just 3 blocks from the hospital. This will allow us to be close enough to Baby that we can still check in on her regularly, bathe her, change diapers, bond with her... try to establish as much normalcy as the circumstances allow. We are in for quite a ride... but the team at Rocky Mountain Hospital for Children is amazing! We feel like we are in the best hands possible for our little girl and feel so blessed that this was found early on so we can plan accordingly. All this would be a lot more stressful if she was born here in Durango and had to be helicoptered to Denver in an emergency situation. Between our Durango doctors and seeing Dr. Porreco when he comes to Durango, it feels like we have an appointment a week from here until Lindsay moves to Denver. We will continue to keep you posted as things progress and change. If you don't hear from us for a while, no news is good news... but we will certainly be updating the blog once things start happening in Denver. Hugs to everyone! Thank you for all your well wishes and prayers! We are so blessed to have such a wonderful support team! XOXO Ryan, Lindsay & Baby |