Our story starts when I was just 10 weeks pregnant. At our appointment, our midwife was unable to detect a clear heartbeat, and wanted to send us over for an ultrasound just to be safe. During the ultrasound, a heartbeat was detected thankfully, but at the same time the tech decided to take a few measurements, including a measurement of the fluid on the back of Raven’s neck. The results came back off the chart, and the doctor called us in to talk, giving us our options, and bluntly putting the risks and quality of life our unborn child could be facing.
We were referred to a MFM doctor for more testing and more in depth ultrasounds. At our first appointment, the ultrasound showed a perfectly normal nuchal fold! We were thrilled! We also found out we were having a girl, after our first being a boy! We were 16 weeks along at this point. We also proceeded with the Harmony test to detect if there were any abnormalities our daughter may have. All came back good with the blood work.
We were seen often over the next few months by both my midwife, and the MFM. My blood pressure continued to rise, and I was maxed out on medication dosing. Raven has little to no fluid, and was IUGR. I remember leaving what would be my last MFM appointment, with the doctor saying “we will see you at 30 weeks, if you make it that long”. He was certain I wouldn’t.
A week later I received 2 rounds of steroid injections just in case baby had to come soon. About two weeks after that, I went to a regularly scheduled OB appointment for a NST and BPP ultrasound. I had these several times a week. This week though, I knew something was not right. I had not been feeling Raven move throughout the past day.
At the appointment(I was 28 weeks exactly), the tech tried everything to get Raven to move and respond, but nothing was working. I pretty much had no fluid, and Raven failed the BPP. My midwife called us into the room, and we knew it was bad. We headed straight to our delivering hospital(about 35 miles away, and during the worst snowstorm of the year). When we arrived, the staff was waiting, and I was immediately prepped for an emergency c-section.
The operating room quickly filled with at least a dozen of people. I remember laying there hearing the words”baby is out”, and seeing a nurse carry a towel to the area beside me. In that towel was the smallest baby I had ever seen. At birth, Raven was 2 pounds 12 inches. Raven was not born breathing. They immediately started protocol to try and resuscitate her. I knew what was going on at the time, but my husband did not. After a few minutes, they were able to resuscitate her, and whisked her away. This hospital wasn’t equipped to take care of a baby as critical as Raven, so a transport team traveled down and transported her to the nearest children’s hospital, a little over a hour away.
Raven stayed at this hospital for 4 months, when it was decided that they could no longer care for her due to her critical needs, primarily her lungs. We were told many times that she wasn’t going to make it, she is the sickest baby in the unit, this round of steroids is our last shot, ect.
At 4 months old, Raven transferred 2 hours away from home to a children’s hospital that specializes in her specific lung disease(Bronco-pulmonary Dysplasia).
While BPD and sick lungs are one of Raven’s most dominate issues, she also has several other diagnosis’s including: severe chronic lung disease, bronchopulmonary dysplasia, Congenital Lobar Emphysema, Pulmonary hypertension, Bicuspid Aortic Valve, Mild Aortic Root Dilation, Agenesis of the corpus callosum (ACC), absent septum pellucidum, Aortopulmonary collateral vessels, and hydronephrosis in her kidneys. She has already undergone laser eye surgery for ROP (Retinopathy of prematurity). Raven’s case of BPD is unique in the fact that her right lung is collapsed, and her left lung is so hyper-inflated, it has pushed her heart, right lung, and trachea over and out of their correct spots.
Raven had surgery at 8 months old to have a tracheostomy and gtube placed. She came home on May 4th 2015 after 15 months in the NICU.
On February 14th, 2017 Raven had a Lobectomy done on her left lung. They removed 80% of Raven’s left lung. This will NOT remove all of the bad tissue unfortunately, but if he were to remove all of it, Raven would not have any tissue left due to the severity of how bad her lungs truly are.
We were told 5+ times that there was no hope for Raven, but we knew she would prove the doctors wrong. She has been on life support five times, had countless blood transfusions, and dozens of procedures.