Sunday, September 8, 2013

Friday, June 14, 2013

Grace gets a new necklace, sort of...

Life gets busy and I forget to write but it is about time for an update...

There have been some big changes with Grace. In December we made the difficult decision to put Grace through yet another surgery. Grace had been throwing up a lot of her feeding which was horrible to watch her go through. She would struggle to breathe, lips would turn blue, and then she would end up in the hospital with aspiration pneumonia. We were in the hospital nearly every two weeks, it was time to do something. We met with GI and general surgery and decided on a Nissen, a procedure that would make it so Grace could no longer throw up. General surgery also recommonded having her intestinal malrotation corrected at the same time. All of this was a difficult decision because during Grace's very first surgery, when she was two weeks old, she coded and needed to be ressesitated. We almost lost her. But, we knew this surgery would be good for Grace and would lead to a better quality of life. So the date was set, November 29 2012.

The day of surgery came, they took her back and we waited. About an hour had gone by when the surgeon came to the door and said "We have a problem."  Our hearts dropped. He told us it took three anesthesiologists an hour just to get her breathing tube in. Her airway is so small and her anatomy is so different than a typical kiddo. The surgeon said she was stable, but not stable enough to do surgery. He said the only way he would even consider touching her is if she had a secure airway, a trach. We would have to think about this, as it would be a huge decision. A trach had been brought up before, but I brushed off the idea saying she didn't need one! So he left, letting us know Grace was stable and they would be bringing her up to the PICU with her breathing tube.

About ten minutes had gone by after the doctor left and we heard the Emergency Chimes and they announced "Anesthesia stat to OR 1" I knew this was Graces room! I lost it, I thought we were going to lose her. It seemed like forever until the anesthesiologist came in to talk to us and let us know she was ok. It was horrible. We talked with her a lot about the option of a trach. She told us that if for some reason Grace was to stop breathing and needed to be intabated, she would not make it. It took 3 highly skilled anesthesiologists to place her breathing tube in a highly controlled place (the OR), it would be unlikely they would be able to place a breathing tube in an emergency situation and it would end up that they would have to trach her in an emergency. We knew a tracheostomy had to be done, it would save her life one day.

Grace was taken to the PICU , and her surgery would be on Wednsday, 3 days later. Her initial surgery, the reason we were there in the first place, would not happen. I spent all of my time up until the day of surgery on Facebook groups for Moms of Trach Babies. I asked questions and tried to learn as much as I could to prepare for a hole being cut into my babies neck.  I spent hours staring at my baby girl in the hospital bed with a breathing tube, looking at her sweet neck and kissing it. We spent hours talking to every doctor, nurse, and respritory thrapist in the PICU that knew Grace so well, looking for reassurance that this was the right decision for her.  We knew this is what had to be done.

The day of surgery came, it would be a fast surgery only about an hour. The anestisiologist spent hours with us, the same amazing lady that had been in the OR with Grace just a few days before. She had been up to visit Grace everyday. She changed her schedule around to be in the OR with Grace. She knew how terrified we were. She had the nurses call us during every step of the surgery so we knew what was happening. Everything went as planned and Grace was back up in her PICU room looking peaceful. Grace was a champ and she healed over the next week. We decided this was enough excitement for one hospital stay, and we would wait until summer to have Grace's Nissen and Malrotation surgery.

A couple days after Grace's Trach was placed, the PICU Nurse Practitioner came into her room.  She told us that she was up all night thinking about Grace and in her opinion it would be good to get her Nissen and Malrotation surgery done while she was already in the hospital.  After talking to her we made the decision to go ahead with the surgery. Three days later, Grace again went down for surgery, this time to fix her Malrotation and to do the Nissen. This surgery was much longer, but when it was all over, everything had gone smoothly. Grace recovered from both surgeries like a champ!!

Before we could take Grace home we had to go through a lot a training on how to take care of her now that she had a trach. It was scary, but we learned quickly! We were determined to get home by Christmas. And we did, we finally came home four days before!! 
So many new machines, she needs a bigger room!
Finally in her own bed!!

With a trach comes nursing care, something that we had been trying to get since Grace was two months old. We finally have help, during the day and at night!! Gracie's nurses have been amazing. They help get her ready for school in the morning, go to school with her, and take care of her while Beau and I are working. At night Beau and I finally get to sleep, unless Brady decides to wake up. 
Brady missed his big sister!

Placing a trach was one of the most difficult decisions that we have had to make for Grace, but we have no regrets, not one, except for we wish we would have done it sooner. It has changed her life so much, in so many great ways!! Before the trach, Grace was in and out of the hospital nearly every two weeks. Even just a cold made breathing more difficult for her. Dare I say it...6 month later, and we have not been in the hospital except for check ups and to visit the great doctors in the PICU!! Grace is happier, and sleeping better too!! It has been amazing. 
So happy!!

Thanks for alway supporting us and for all of your prayers for Grace!!