I'm starting this blog in sort of the same manner as I received the news I'm about to share, blankly. I've been staring at the screen for a few minutes thinking about how I'm going to put this into words, but frankly I'm not sure I have the words for it yet. Wednesday Sophia went into the OR to have a follow up procedure done on her airways and for a ABR hearing test. The morning of (around 2am) started our already long day. Sophia woke up crying, she never wakes up crying. She seemed upset, fussy like something was bothering her. I decided Tylenol might help, no she just throw it back up. Finally, around 4 she snuggled back into sleep in mommys arms. Around 630, we woke back up to eat and then around 9 we started to get ready for Riley. It took several hours just to get Sophia prepped and ready to go back into the OR. Around 1:30, they finally took her back. The OR nurse came into our little room to carry Sophie back. Soph reached right up to her and with a smile she walked her away. It brought tears to my eyes. Its different this time around. This was our 5 trip to the OR but now she's older, now I know her more, her personality, now I know she will know what's going on, now she's aware. Sophia was in the OR until 4. The nurse came out periodically to let us know her progress. Half way through the procedure, the audiology team came out with the results of her hearing test. This is where I drew the blank (and again I'm blank, in fact I started typing this days ago and just now am coming up with the words). She first asked me what I thought about her hearing. I said I know she hears some and she seems pretty aware of her surroundings. The nurse then replied, the test showed no response in the right ear. Blanks! I think at this point I lost my hearing. The conversation continued and on the outside I was saying 'Okay' and 'Yeah' but on the inside I kept repeating ' Don't cry, don't cry!' She continued that Sophia also had moderate loss in her left ear and that we will be scheduling an appointment for hearing aids. This was not the good news we had been hoping to receive. My minds a little blogged, I know she hears but for there to be no response at all in the right, I'm floored. As far as what it all means for the future and the next steps goes, we will be consulting the doctor on hearing aids immediately. We want
to help her in any and all ways possible. Then we will go from there. It's a whole new world when you know your child is going to have these lifelong limitations. These challenges. However, in our case it was expected, not wanted, but expected. So now, we play ball and we learn and we grow. We play the game and know the steps to help Sophia overcome and defeat the obstacles in her way. For now, we do not know much as far as the future. The long term affects of the hearing aids, how they will help, speech or sign language, further tests, schooling, and regressive changes are things we do not have the answers too. These things like many will come in time. What we finally do know for certain is that Sophia will suffer from hearing loss for her whole life. In which case, I shouldn't use the word suffer because fortunately for her this will be all she knows. So for the present, we are and will never treat her any different. We will love her more and do everything in our power to provide her with the resources we need to help her. It's would be naive of me to say I don't pray for her to hear and learn to speak. If for only one ear, I'll take it. Can children that suffer from hearing loss and wear hearing aids still learn to speak? Can hearing aids fail? What then? As you can see, thought we have the answers to some questions many many more arise! So for now, we schedule more appointments and hope these answers do come in time.
Let me remind you, we received the news about her hearing test half way through her stent in the OR. Needless to say, this made for a longer wait to be finished. It was hard to sit and take in the news we just received. I didn't cry. I couldn't cry. I knew the possibly was there it was just hard to swallow. My grandma was with me in the waiting room, I saw her wipe away a few tears. I knew I couldn't cry then because me crying would make her cry. It would have been nice to hear some good news. As we spoke these words, the dr returned to let us know Sophia was in recovery and doing well. The doctor then went over his findings. He told us that her nose dilated well, that he did not find fluid on her ear drums so she did not need tubes and that during the bronch scope HER AIRWAY DID NOT COLLAPSE!!! Good news, amazing news and we will take it! Her airway has strengthened! She's improved. He then spoke words I'd been longing to hear, now we can start the road to getting the TRACH OUT!!!!! Wahhhoooooo!! This is a godsent message! This news couldn't have came at a better time to lift our spirits, to give us hope. However, he briefly explained that getting the TRACH out is a long process and may take several months. The first steps is coming off the vent at night, then down sizing the TRACH,
then learning to breath a new way. It will take time. But good God Almighty, I'm much happier on this side of things. On the mend we go Sophie! Deep exhale! This is the most amazing news. I can honestly say I didnt expect this to come so soon but Im more thankful than words can express. This blessing of a news couldnt have been more perfect or more needed. Sophia Kay you are ready and you can move mountains! What a day I tell you what, after taking in all the news it was finally time to see the baby girl. Ugh recovery was rough. Poor thing was sooo uncomfortable. I'm very glad they kept us over night because they were able to give her something for the pain. It was a long night! However, now we are all back to 100% smiling and bracing for what's next..... Answers or more questions.
