6 months ago my husband (Chris) and I had twins born at 29 weeks and 5 days through an emergency c section after I went into pre-term labor. Sawyer and Ruby were taken directly to the NICU where we began to understand the seriousness of our new situation. Sawyer was 2 pounds 12 ounces at birth and Ruby 2 pounds 5 ounces and while they were both tiny other than working on breathing eating and growing we were in good shape. It was however clear we were going to be there for a while simply because they were so tiny.
36 hours after they were born I became very sick with Sepsis, a life threatening condition caused when an infection makes it way into your blood stream. I was very fortunate to still be at the hospital and was taken quickly to the Intensive Care Unit where a team of doctors worked quickly to save my life, had I already left the hospital they said I might not have survived. I spent the next 4 days in the ICU getting antibiotics through an IV before moving out of the ICU for two more days before I was discharged. My poor husband had in the meantime faced a tremendous amount of stress, forced to face the possibility that he could be the single dad of twins. Fortunately they were able to find the source of my infection and treat me before my organs suffered irreparable damage.
The babies remained in the NICU for the next 8 weeks and Sawyer came home on August 30 and Ruby on September 1. During those weeks I went back and forth from the hospital at least once a day, sometimes twice. We worked hard to make sure our babies felt bonded and loved. We learned all about what it means to care for not one but two micro-preemies. The biggest of these struggles was bottle feeding and breathing. In addition, as Ruby began to grow it was determined that she did in-fact have a club foot and would require two years of wearing special shoes that will train her foot to work properly.
Once we got both babies home, we soon discovered that there was something wrong with Sawyer’s eating. He would vomit almost every time we fed him and it was huge amounts. A week after bringing him home I was back at the doctors office telling them something was wrong. We were told it was reflux and given meds and sent home. After a while longer of Sawyer not gaining weight like he should they began some testing and referred us to GI at Children’s Hospital. The tests that we were given came back normal and it seems like all the doctors could tell us was that he had reflux and it would get worse before it got better.
In the mean time both kids caught my cold and one night while eating Ruby vomited, and gagged on her own puke. She stopped breathing and Chris had to perform CPR and I called 911. She literally turned blue in Chris’s arms. Once the ambulance and fire truck arrived we were transported to the hospital where we stayed in the PICU for two nights as they monitored Ruby’s breathing. We were released after two nights and told to not send the kids to daycare until they were older because their little bodies could not handle the germs. Our mothers stepped in and took over watching the kids so I could go back to work.
We continued to struggle with Sawyer’s eating and as he got worse and worse, eventually refusing to eat when awake. We had tried him on two different formulas and saw no improvement. He currently eats a formula called Ele Care that runs $50 every three days. At this point Chris started researching trying to figure out what was going on with our boy, since it seems and definitely felt like the doctors just thought it was reflux and we were over reacting. He found that Sawyer’s symptoms matched a disorder called Laryngomalacia and we began pushing to see a ENT doctor. We got in the next day and were told that day that Sawyer would benefit from a surgery called a supraglottoplasty. It was scheduled for the next week, mostly due to the fact that Sawyer had been diagnosed with three things; Laryngomalacia, GERD, and failure to thrive. We were hopeful that this surgery would help little Sawyer eat.
Surgery helped, for about 4 days he seemed to be on the mend and then he began to refuse the bottle and everyday it got worse. By New Year’s Day he completely stopped eating and I took him to Children’s ER where they determined it was time for him to be given a nasal gastric tube so he could receive nourishment even if he was refusing the bottle. So we we checked into Children’s so they could get us set up with an ng tube and teach Chris and I how to place one. They also continued to try to figure out what is causing Sawyer to stop eating. This is still a bit of a mystery and he will continue to get testing as they try to help Sawyer learn to eat.
While we were in the hospital Chris’s company held a massive layoff cutting 10% of their employees. Sadly Chris was one of those employees. As we scramble to try to figure out what is next for us, we realized that we would no longer need the day care that we were supposed to start the following week. A day care that already told us that they would not take Sawyer due to the ng tube and now told us that they would not refund us our $200 deposit and first week of daycare we paid for up front, total of $795 that we would not be getting back.
It has literally been one thing after another and now we are faced with surviving on my income alone with thousands of dollars of medical bills, in addition to the harsh reality that even when Chris does get employment again we will have to meet a whole new out of pocket maximum for this year.
Again I am not good at asking for help, but I am also at a point where we don’t know what else we can do.
- Amy Wozny
- Amber C
- Carrie Woodruff
- Linda Lee
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