Here we are now with a 2 ½ year old celebrating her 2 year Heartiversary, how did this happen?! We always have Nevaeh’s donor to thank for this precious time that we have with her. May 9th will be a day that we will never forget! These past few months have surely passed us by so quickly. February 12, 2020 Nevaeh had her surgery to remove her tonsils and adenoids in hopes of giving more room in Nevaeh’s airway so she would have a more successful chance of being decanulated from her trach. Her ENT specialist wanted to see her 6 weeks after to reassess her to see if she could possibly be decanulated. That date was March 23, 2020, but that had to be rescheduled do to the current pandemic. Her team wasn’t sure what was to come when it came to her appointments. She had 6 appointments that all were wrapped around her getting decanulated from her trach and Gtube as well as doing follow ups with her team. Everything was put on hold, I was very sad at the time because I just wanted Nevaeh to have a chance to be free from tubes (which would be for the first time sence she was 5 months old). Yes it was very sad to have EVERY SINGLE one of her appointments cancelled, but at the same time I knew it was for the best. We did go into Hematology a couple of times the first week of March and April to follow up with her blood counts because she was still getting shots at the time, and it is mandatory that they do labs every 4-6 weeks while she is receiving them. The amazing news, by God’s grace, is that her levels have been staying up on their own sense March 9, 2020 without having to get her injections that would keep her blood count up where it needed to be. At first we decreased her dose, but her levels started going up higher than normal. From a hematology stand point, they wanted to make sure that her body wasn’t over producing the blood cells that were needed before. I am so happy that I don’t have to give her shots for the time being! We will follow up with Hematology at the end of May and we are continuing to pray that her body will continue to make the blood cells that she needs. We got a call April 17th that Nevaeh had a stay that was scheduled for a sleep study and possible decanulation from her trach. We talked as a family and to her team to see if this was the best option for her. Due to everyone in quarantine it was the best option at the time because there weren’t as many people in the hospital because of the stay home order. April 20th we got a call at 4pm that there was a bed ready for Nevaeh at Children’s in Dallas. The first night would be a sleep study with her trach being capped like it normally was during the day, but this would be her official first time to have her cap on while she slept. The first night at the hospital was a complete success! The second day that she was there the team would go over her sleep study and if everything looked good then she would be decanulated! April 21, 2020 at 9:15 am Nevaeh was decanulated from her trach! Then at 10:18 am the same day we got a message from her Gastroenterologist that she would be ok with Nevaeh having her Gtube pulled while we were inpatient! This is something that is normally not done inpatient but in the clinic. With the current situation at hand her specialist was on board with the decision to decanulate her Gtube before she was discharged from the hospital. We couldn’t believe that all of this was (what seemed like forever) is happening so fast! On Nevaeh’s second night (April 22, 2020) Nevaeh had another sleep study, which was her first official night without a trach. During both of the sleep studies she was monitored very closely to make sure her body was not in distress during this transition. April 23, 2020 we got the news that Nevaeh did amazing during her sleep study without her trach, and at 10:23 am she was decanulated from her Gtube! The first official day that Nevaeh had NO TUBES! She was very much down to celebrate! Without having her Gtube in it was like she had a huge increase of appetite! Her favorites right now seem to be anything she can get her hands on, but she is really loving mac and cheese! She has even also enjoyed some icecream, which is something that she has never really likes because cold foods was a big no for her. She has also increased in speed when it comes to speed walking/ running. She has been wanting to stay outside every chance that she gets. I am so ready for the day that she will be able to swim because these past 2 years Nevaeh has only been able to be in a baby bath tub, and the water could not more than an inch deep of water having the possibility of getting into her trach. Our prayers for Nevaeh is continued healing of her stomas. If her trach stoma is not able to close in 2 months she will need to go into surgery to have a few stitches in the help it close. Thank y’all always for the continued thoughts and prayers to our sweet baby girl as she continues on this journey!