A NICU Story (part 7)

After they had rolled Evie back to surgery we and the family that came to support us and Everly went down to the cafeteria. After only an 1hr and half her doctors walked through the cafeteria doors. My heart began to pound, somethings wrong. The surgery was supposed to take 4 to 6 hours. Why are they here now? The anesthesiologist sat down and told us that he saw a lot of mucus in her airway and was worried that she may be getting sick. Aaron and I knew that she wasn’t sick at all. Everly must be suctioned often because she can’t swallow and if she doesn’t get suction the mucus just accumulates making it appear as though she’s sick. Nevertheless, the surgery was called off and rescheduled for January 26th.

As crazy as it may sound I was kind of disappointed about the surgery not happening. It takes a lot to mentally prepare yourself for your baby having such big and scary surgery so when it got cancelled it was such a swing of emotions. On one hand you’re relieved because you know your daughters safe but on the other hand you just want to get it over.

When you have a child like ours your whole life revolves around preventing her from getting sick. We decided that until the surgery we wouldn’t allow any visitors.

A couple of weeks later the night before the surgery doctors decided to intubate Evie, so that the anesthesiologist could take her time and study Evie. They asked us to step out well they did the intubation. How do you say goodbye to your baby knowing it could be the last time you see her awake?

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The night before the surgery.

January 26th, my Grandmas Birthday! We go through that same steps as last time, get a hotel, wake up early, go to hospital around 8 and watch them for the 5th time roll my baby away. After about two hours we got our first update, everything is going good and according to plan. Although, good news was great the best new would be that the surgery went well and she’s now in recovery. after 5 hours Evie was out. Everything was textbook. No surprises. We were told that we could see her in 15 minutes, but 15 minutes had come and gone. So, like any mama bear I hunted down that doctors. Where’s my baby? Turns out they were just getting her situated. Finally, they took us back to see her. My perfect strong angel lied there with every imaginable wire and tube you can think of. She would remain intubated until the doctors felt comfortable enough to remove her off life support. She was doing so well Aaron and I decided to go back to the hotel and celebrate. Somehow her victories were ours. We splurged on dinner. He had steak, I had salmon and we both had beer. After all it was a celebration.

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After heart surgery

Both of us fell asleep happy and then morning fell. Aaron’s phone rang. The call lasted no more than 3 minutes. They wouldn’t say what happen, but they needed us to come in right away. We both sprung out of bed. I’m not even sure we brushed our teeth. We hustled to the car and drove off. Thankfully, we were only ten minutes away. As we walked into the PICU we began to start the routine of washing our hands, but the doctor saw us and told us to come now to Evie’s bedside.

As we walked up to the bed there were two nurses and 5 doctors and that’s when they said, “We tried to remove her off the ventilator and she went in to cardiac arrest.” Everly died. She stopped breathing and her heart stop beating. They immediately re-intubated. After 10 minutes they were able to revive her.

After they tell us all this one of the doctors said, “I’m sorry” and I said what I always say “it’s okay” then the doctor and social worker looked at me and simultaneously said “No, its not”. I started to cry. I think that was the first time that I realized that it wasn’t okay none of this was the whole thing sucked. NO ONE should have to go through everything we’ve been through especially the babies. After I composed myself I walked over to Everly and kissed her on the forehead. A couple of the nurses and employees from the NICU stopped by to see her and as I was talking to them someone stopped me and gestured towards Aaron. Aaron was crying and then he began to sob. You wanna know what breaks a man? His daughter dying.

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A NICU Story (part 3)

Four Days before Everly’s gtube procedure she had a hearing test done and a week after the surgery I received the results. For a couple of days the audiologist and I had been playing phone tag, with every ring I became increasingly more anxious until finally she reached me. I was at a doctor’s appointment with Aaron when I received the call. I ran outside so I could speak more freely. The audiologist asked if she could meet with me the next day. I said yes but could she give me the results over the phone. She was apprehensive but agreed. She told me that Evie is missing the Semicircular Canals in both ears leaving Everly completely deaf. I kept it together just long enough to hang up and then, there in front of the doctor’s office I began to sob. Our baby would never hear her beautiful name, the one we picked just for her. My heart was broken. Another dream stolen from us. Dreams of listening to music, me introducing her to NSYNC and us making fun of the Backstreet Boys. Aaron trying to teach her to scream like they do in metal.

I still had to tell Aaron. I waited for him to come out, I didn’t know how to tell him so I just said it “Everly’s deaf”. He stayed quiet for a bit and then said “guess we’ll be learning sign language”. That was the thing about this diagnosis in a sense it was the easiest one because we already had the answer, sign language.

As I write this it makes me think about how complex your health has to be that the diagnosis of deaf is the easy one.

I ended up meeting with the audiologist the next day. She went over how they do the test and how they get the results. She told me without the Semicircular Canals Evie would not be a candidate for hearing aids of any sort. She did however mention a new procedure that was still in the trial stages. A hearing device that they connect directly in to the brain stem, at first it seemed promising until we realized it was brain surgery then it just seemed scary. We would discuss it a few more time but ultimately we decided that we didn’t want to put Evie through any more than she had already been through. From then on we began learning American Sign Language. I never imagined I’d be learning a new language in my 30’s but here I sit. As for Evie she’s picking it up like a champ. Sadly, to my dismay her first word was “Dad”. All she has to do is sign Dad and he truly becomes putty in her hands! Yes, a story as old as time. This father/daughter bond is strong!