1 Week Old

I can't believe it's only been a week.

After 41 hours of labor (24 of them active), we welcomed our baby girl into this world. Because we knew she had some special circumstances, we delivered in the OR at Miami Valley Hospital (as it was directly connected to the NICU). They put her in my arms while her daddy cut her umbilical cord, and then they whisked her off to be assessed. She wasn't breathing. After intubating her, they were able to get her to take her first breaths, but neither of us would get to hear our little girl's first cries until the next day.  When my water was broken we were told that Abby had passed some meconium in the amniotic sac, so not to be surprised if she didn't make any noise at birth. Because of this, I didn't think anything of it when she was silent upon delivery. Looking back, I don't think I even really processed what the neonatologist was saying when she came in to tell me that Abby had to be intubated. Maybe I was in shock from just birthing a child, or maybe I was just focused on the fact that they had her breathing again, but either way, the news did not have the expected impact. I was just sort of ok. They were going to do some x-rays and an echocardiogram and then come talk to us.

We were taken back to a recovery room without our daughter, where we would wait for another hour and a half. This period ended with a visit from the pediatric cardiologist with devestating news. And this I definitely heard. He explained that Abby had a number of cardiac anomalies, one of which was of major concern, and that he was not sure about the prognosis. He told us, in so many words, that she might not make it through the night. 

We were taken to see her in the NICU where we held her hands and told her we loved her. They had put in an umbilical catheter so we couldn't hold her, and I couldn't even stand up to give her a kiss as I was still pretty weak. Before we were escorted back to our room, the cardiologist said that they would start her on IV meds to relax her heart, and we'd see how she did, but we were taking things hour by hour. 

Our Aberdeen exceeded expectations. Not only did she make it through the night, she responded so well to the medication that by the next morning she'd been extubated and was breathing on her own with oxygen supplementation via high flow nasal cannula. We got to hear her making little noises and were assured by the cardiologist that she could not have done better.  Praise The Lord.

We spent the next day and a half in the MVH NICU getting to watch our little bird fight the odds before we were transferred Tuesday evening to Cincinnati Children's Hospital where we would be in the care of their cardiomyopathy team.

The next couple of days were an absolute whirlwind of doctors, tests, and interventions. Ultrasounds were done of her head, heart, and kidneys. Panels were sent off for seemingly every syndrome in existence. We met with cardiologists, neurosurgeons, geneticists, ophthalmologists, and more. Labs were drawn, medications were changed, she was slowly taken off the nasal cannula since she was breathing well on her own, and her umbilical catheter was removed - making it possible for us to finally hold her whenever we wanted. Lastly, a feeding tube was inserted in place of her IV drip and we started to attempt bottle and breast feeding.  We learned that her lungs and kidneys were fine, she has at least sagittal craniosynostosis, she doesn't classically fit any known syndromes, and that her heart has a number of problems.  In addition to hypertrophic cardiomyopathy, she has an ASD and a VSD (small holes in her heart), as well as a left SVC (most people have a right SVC - Abby has both), and a moderate-severe PDA (another hole that usually closes within 2 weeks of birth). While the only one of immediate concern is the HCM, it can be controlled on medication and has the potential for improvement over time.

She was officially stable.

So stable, that on Friday evening we were moved from the cardiac intensive care unit to the cardiac step-down unit.  While she is still hooked up to a few monitoring devices, has a picc line for any additional lab work or new medication, and will continue to have her feeding tube, things are much less urgent in this unit. They don't have to check on her quite so often, and have given us the chance to try to learn what it means to be Abby's parents.

Our little fighter has made great strides in the seven days since she was born, but she still has a long way to go. There has been discussion of sending her home with the feeding tube since she is really struggling with eating (this is also how her heart medication is currently administered). While I'm thrilled she's done well enough that they think she may go home relatively soon, the idea of her having to stay on the feeding tube breaks my heart. We were prepared for lots of things to be difficult, but for some reason it never occurred to me that she might not be able to eat. We've been working with lactation consultants, occupational therapists, and speech pathologists who have all told us to just be patient and that this is not uncommon with their heart babies - their bodies are already working so hard that any additional work may just be too much for them. 

Abby's PDA closing is also a prerequisite for going home. They are going to do another echocardiogram on Thursday to reassess its status and determine if it needs to be addressed surgically. They aren't worried about it causing immediate problems, but if it doesn't look to be closing on its own, it could be troublesome down the road.

Today we were able to unhook her from one of the monitors and removed her picc line. Every day shows a little more promise and we are so in love with our little girl.

Thanks to everyone for the help, thoughts, and prayers. We are so thankful that we have been taken care of by the right people all along the way and believe that God is looking out for His special Abby Wren.