Answered Questions....?

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.

Bitter Sweet

This has been a long time coming... I have been waiting, longing to hear something since long before December 27th came around last year. I remember laying on the surgery table in OR waiting in anticipation for it and listening ever so closely for it. Knowing in that moment something wasn't quite right when that sound was missing. My heart rate literally dropped. The nurse had to give me something to keep from passing out. As my husband kept giving me the thumbs up, that lingering fear grow louder as the sound of my baby cry grew silent. I have spent many nights wondering if I would ever hear Sophia cry. Her silences began to speak volumes. Her expressions and silent cry were almost deafening. Heartbreaking. I became to except there would be no sounds. I became to take joy in her many facial expressions. I began picking up on every little sound and hum and ding and beep of her alarms and vent and monitors. Those sounds became Sophia's cry. Those sounds became comforting. August, 17th 2012, almost 8 months after Sophia was born I received a bitter sweet gift. I had just left my house to head to the grocery store when I received a text from my nurse reading I have a sweet video to show you that involves precious little sounds. Instant tears streamed down my face at the grocery. A nervous excitement in my gut. A bitter sweet mix of emotions that it happened and it happened when I wasn't home. I have been longing, NEEDING to hear her cry to know that her voice was inside her. I rushed home. Thank GOD for video cameras...for it allowed me to rejoice in the splendid few seconds my daughter cried a sweet sweet cry. Tears of joy, of shock, of hope, of pride and of awe ran down my face. It seemed like a different baby. To watch on a video a baby cry that I have rocked and loved since birth in a blissful silence, CRY. Her tiny little cry could move mountains. It moved this mommy. It moved her whole family to tears. For 8 months, I dreamed of a day that my baby may speak or cry. 8 months may seem like forever, but to know now that I won't be waiting forever is a miracle. Sophia cried. Sophia found her voice. I have yet to hear her cry in person and she has yet to cry again but I know and the world knows that Sophia Kay Rhodes has a voice and she will let the world know it someday. Until the day I can hear that sweet sound again, I will cherish that 13 second video, that gift... for life.

Bragging Rights

Wow, Sophia has been on a roll this past week or so. Literally on a ROLL. She is easily and with such grace rolling herself from tummy to back and back to tummy and side to side. She is on the move. She has amazed me with how much and how fast she grows in develops in such a short time. For being bed stricken for 4 and 1/2 months, in less that that amount of time she is catching up and making progress so well. Week to week her therapist is impressed with the new things she has been learning. Soph is literally on the move. I have been just cracking up watching her go this past week. She has even learned to scoot on her bottom like a little crab. Hilarious! And it works. She scooted like that from on end of the living room to the other. She is trying with all her might to scoot on her tummy but she has some snags. I am assuming the gtube on her belly doesn't feel so well being scooted and tugged across the floor. I with no hesitation believe she will figure that out to. She is smart, I tell you what. She is also standing with assistance and she can sit by herself for short periods of time. Today, she even stood and held herself up against the couch. I put her there but she stayed there. I would just like to say, YES I am most certainly bragging about my baby girl but I would also like to say her and I both deserve these moments of triumph and ridiculous joy! She is just a rock star and I couldn't be more proud as her mommy. I just can't wait to see what the next couple of weeks bring with her development. Almost 8 months now, I'd say she isn't too far behind her age. Still working towards goals but we will get them no matter the time or distance. It is just so great to see her rolling around free of tubes and wires. I didn't think I would ever see this day any time soon. It is a proud and beautiful moment to sit and watch her play and be FREE. Awwww those little moments are so powerful and meaningful to us. More now than had we not been chosen to go down the path we are on today.

Sophia has, per usual, been busy. Busy growing and busy seeing doctors. We finally got word we will be going back into the OR on Sept 19th. She will be put under for nearly two hours to have her hearing tested as well as her airways checked. They may possibly dilate her nasal passage ways at this time. UGh.

We will get through this. Also, we had our Not-so-much-sleep-SLEEP STUDY. Sleep studies are a joke. How on God's green earth is one suppose to sleep through a sleep study with their ENTIRE head wrapped and covered in electrodes and wires and goo. She had a bajillion wires coming from her head, braces and wires around her chest and tummy and leads on her legs and arms. Needless to say, with the lights and beepings and wires, neither baby nor mommy got any sleep. At 5:45 am, the nurse returned and said do you think your child had a normal sleep. UM, NO WAY. Normal sleep to Sophia is down for bed about 8pm and awake around 730am. I have a GREAT sleeping baby. The sleep study was far from GREAT. Needless to say yet again, we have to remain on the vent settings and with oxygen for the next 3 months when we get to have a repeat of this wondrous occasion. I wonder if Daddy knows it's his turn for the sleep study next...hmm. As far as all other health concerns, we have NONE at this time. I think we have some allergies because we developed an yucky cough last weekend. Luckily we are moving past that. All else is on the up and up and UP is where we'd like to keep it, thank you. So for the month of August, we have been doing great. On the 16th of this month we will have officially been home for 4 months. So are slowly but steadily racking up more days at home than spent at Riley. We had a short lapse back in June when we stayed in the hospital for 5 days but since then we are still climbing forward. Choosing to stay home and care for Sophia has been on the most difficult and yet enriching decisions I have ever made. I am so grateful to my husband for abling me to stay home with Sophia to be able to be with her through all her doctors visits and therapies and to help her grow and develop. It is a true blessing and joy to bond with her and watch her improve daily. My heart would break to not be here with her. Though things are challenging at times the reward of seeing her grow out weighs all other odds. Go Sophia Go!

Funny Baby

Not the First and Not the Last

Wow, this has been an incredibly busy month for us. Sophia has had several big appointments at Riley and things with therapy. We have seen everyone from eyes, ears, lungs, heart, and speech. As you know, at our last pulmonolgy appointment they took Sophie off oxygen during the day. This has been the biggest blessing EVER. She is doing beautifully. No DESATs or real episodes without it. She is doing great with the HME too. Most of the time, she doesn't even really need that. Its nice to keep it on though for protection. She has so many secretions anyway that humidity isn't an issue. The biggest blessing comes in the sense that I now get to carry my daughter freely about our house like any other baby. I can bring her room to room as I go. I can put her on my hip and leave the room without someone carrying a machine after me or dragging and adjusting hoses. It truly is liberating. We have even been on a few mommy and daughter walks. Really sweet times to cherish. Still longing for the day, I am free to drive alone with her. (this will not happen as long as she is trached). So for now, we will be showvered by daddy and Sophia and I will ride in back. With all these appointments this month, so many changes have happened and yet there are so many answered unanswered. We met with cardiologist last week. They performed and EKG on Sophia's heart. I thought they would do an ECHO but they just wanted to listen to the murmur this time. The murmur is caused by a bicuspid atortic valve. The bicupsid valve is a birth defect (heart disease) that is associated with her CHARGE syndrome. One does not have to have CHARGE to have this abnormality. Many are born with it daily and many live without knowing. In terms of the H in CHARGE, it stands for HEART. In terms of Sophia's condition she has a very mild heart condition on the CHARGE spectrum. Sophia still also has the PDA, which is a small hole in the heart. The cardiologist did an excellent job at explaining both of these to me. At the time these were discovered, it was not priority to treat due to her life-threatening airway issues. The doctor explained that one they like to give the PDA a year to close on its own. We have another appointment schedule for the end of Novemeber for an ECHO. After the year mark, they will continue to monitor it for changes. The only need to go in and surgerically repair the hole is if it would start to leak blood the wrong direction, reguritation. This could never happen or happen several years down the road. The biscupsid valve is on the main artery. Instead of having three laps to open and close the valve Sophia has two that are moderately fused together, making her atery open and close assymetrically. Again, the only need to go in and repair this valve is if the valve starts to leak and the flaps of the openning do not close properly or flip (curl inward). Again, with age and life condition this could be teens, to 20's to 30's in terms of years into her life before they need to have surgery on her heart. The idea of heart surgery still looms heavily within my own heart. No matter at what age in her life if the need should occur she will always be my baby girl and the idea of it will always leave an ache in mine as well. However, for TODAY, we are fine. Today we are OKAY. So for today we will focus. Also, last week we visited with ENT for our hearing screen. The tests they perform in office and for her age were inconclusive. The performed 3 separate types of tests on her ears. One for her ear drums, one for activity and one to show her response. Each test showed a need to further examination. They said they did not see as much activity as they had hoped in both ears. Therefore with her age and the results, they want to do a more finite test that will give us the exact results of her hearing. This test requires Sophia to be put to sleep in the OR. Due to her age and the timing and sensity of the test she needs to be put under anthesthetics for the best results. The doctor also wants to revisit her nose and look at her airway while she is under in the OR. It makes sense to do as much as possible while she is asleep so we do not have to frequent the OR three more times in the nearer future. The doctors are suppose to call me next week with a time and date for this procedure. This isn't going to be our FIRST time into the OR and it most likely will NOT be our LAST. The idea of her being put to sleep again and so soon after being home unsettles me. I know that it needs to be done and I know it is for the "best" but I think the time I start getting use to the OR is the time I loose my hope as mommy. The hearing exam they perform in the OR should tell us exactly how Sophia is hearing and tell us exactly how and what the doctors need to do to help with her earing loss. It is inevidible at this time to say she will not have ANY hearing loss. THE E in CHARGE stands for EARS and the most common symptom is hearing loss. The doctor did say the ear drums look good but he has a feeling the issues may lie within the inner ear. I know Sophia can hear some. She reacts to some sounds now and makes great eye contact and tracking. However, I am not naive to think she will come out of this test with perfect hearing. Sophia will suffer from earing loss. My prayer is that we are able to help her enough that she doesn't loss the melody and sweet sounds of the world. My prayer is that Sophia's hearing loss in minor and with proper medical assistance can be almost resolved. My prayers are many. My answers are few. The doctor isn't sure what he will need to do until he is in there and able to better evaluate her. This goes for her airway and nasal passages as well. If needed he will dilate her nose then and remove scar tissue. There should be any visible evidence of this, not like last time. The doctors will be calling me this week to set up the times and details. Next week we start another busy month of appointments with an overnight stay at Riley for a sleep study. Hopefully the results of this study will bring some wanted and much needed good news and changes. Some times I feel like there are so many things regarding Sophia's health thrown at me at once I barely have time to process it ALL. In hind sight, that is probaby for the best. If I sit and think about everything we have been through and will go through, it becomes too much, much too much. Its becoming expected. Heatlh issues with your child should never be expected. Never. What I long for now, is the unexpected good news, the unpredicted achievements. For now is the mind-numbing  "well she looks GOOD"s, the well at leasts its mild, or the  "she's ready" or the "what do the doctors know" or the "I know she will be fine"s and the "she will pull through"s. Sophia condition will never change. It is expected she is going to have issues all her life. I am accepting of these things. I am accepting these things as they come one after another after another. We will be okay. Hit after mind-numbing HIT we will be okay. We are aware of our situation and perpared to handle these things accordingly. One at a time. Like, I said with all of these appointments, we are expected news. some good and some bad. It won't be our first and it certaintly isn't our last.

Head and Shoulders and Knees and Toes

And EYES, HEART, and LUNGS too. We have had a busy month already. We have already had 3 appointments the first week alone. I am very thrilled to announce that after a long and disappointing appointment last week, we received some very much needed and amazing new changes in Sophia's care. Last week we had two appointments at Riley, one for her eyes and one for her lungs. Her eye appointment was as expected. The doctors confirmed she can see (how exactly will not be known until she is able to tell us herself). They said she had good tracking and she didn't see a need for glasses at this time. They dilated her eyes to see the colobomas again. She has a larger one of the back of her right eye in the outter (nowhere too important) space. On the left eye, she has a small coloboma the nerve and the nerve looks enlarged.  They question (fear) there might be a coloboma inside the nerve. Okay, not the best news, but we already new most of that. What I am choosing to hang onto is that fact she is SEEING! Doctor confirmed. Mommy already knew that. Also, I am taking it as a good sign she doesn't need glasses yet and that her eyes are  focusing and tracking as they should. I will take it! The most exciting news however came from our lung doctor. She walked in saying she wanted to change this and this medicine and change that setting on the vent and to schedule a sleep study for the month. I was like okay good good good. Then I asked her about Sophia's oxygen needs. She said to decrease as tolerated. I said I didn't think she needed it because we hadn't had any oxygen needs previously and she said take it all away as tolerated. I said ok. :) Then I asked her about the paci muir valve again. I told her I didn't understand how Sophia was suppose to learn to breathe a new way if we weren't able to try it at home.  She said, well I won't quote her for sake of well for the sake of others, that I more or less stated she thinks I am very INTELLIGENT and capable and she agreed with me 100%. She said I will right you orders to try the valve at home under monitors and to try it as Sophia tolerates. SCORE for the parent with the brains. haha. So when the supplies come in, I will be able to work with her on the paci muir valve. I am eager, but cautious. I know there are risks and the rewards may take time but I am just so thrilled to be able to let her try. You never know until you TRY. And, if you haven't caught on already. NO OXYGEN DURING THE DAY MEANS MORE FREEDOM. We now only have to put her on an HME ( a small piece over her trach ) when we travel about. We can use it at home too. Sometimes, we may hook her up to humidity through a trach collar as needed for flow. I can now carry her around my whole house as I want. We are no longer restricted by time for worry of the oxygen running out. I no longer have to carry a 15lb battery and vent and hoses or oxygen tubes with me at all time. Granted, I still have a suction machine, emergency O2, emergency kit, and monitor BUT I'll take it. Those things I don't foresee ever being without. What a VICTORY! Sophia you are a rock star. Mommy and Daddy knew you were ready for the next step and we are so happy to be walking this path with you. 

It's been...

It's been 6 crazy, amazing, heart-wrenching, hopefully miraculous emotionally splendid, beautiful months. When I look back to December and all the days we spent in the hospital, I can not for the life of me ever stop my eyes from swelling with tears, I can't stop the lump in my throat or the flutter in my heart. When I look back on where Sophia was at birth and where she was after each surgery and to where she is now, I can't stop the smile from spreading to each corner of my mouth and I cannot stop thanking the Lord for the miracle I get to see in her daily. This past 6 months has been a whirl wind of emotional ups and downs. The downs are low and the ups well nothing gets better than the UPS. It hard to think that for half of 2012 we have been in the hospital and in and out of doctors visits. However, the optimist in me is anxious to see what the second half of 2012 has in store for my family. 

It's been a few blurry, hurried, busy, exciting, longing couple of weeks. I feel like I haven't even had time to sit and breathe the last couple of weeks. I know my husband feels the same. He works his butt off for his girls. Since coming back from the hospital, we have been playing catch up with our time and days. We have had a few more doctors visits. People (professionals) dropping by the house to check on Sophia and her equipment. Reordering medical supplies and medicines. Catching up on the usual day to days. I was so afraid that being back in the hospital for a week was going to set Sophia back in her development. To my surprise, it has had the opposite affect of Sophie. I swear in the past week or two, she has learned to hold her head up, steady herself better and...wait for it...she can sit independently for a few minutes at a time now. This is HUGE people. What an accomplishment. I can't wait to see our physical therapist mouth hit the floor Tuesday when she comes back from vacation. She is going to be soooo HAPPY. We have been working hard:) GAH I just love her. I get so excited for her and clapping and dance and she just smiles at me. She knows she doing good to. I have even seen huge differences in her personality. She is a character. She is nonverbal but her facial expression speak volumes. The other night she was laughing and just giddy. She had the whole room rolling in laughter. She really is the best baby. 

It's been a expected, unwanted, disappointing, knowing, wondering, needing more couple of days. We had our appointment with Speech Thursday to discuss the paci muir valve. What a loong night that ended up being. We took the last appointment of the day so we could get in a few months earlier. I was eager for the appointment. Hopeful for the appointment. Not surprised by the appointment. Sometime you want something so bad and in the back of your mind you know your wanting too much. We were the lasts one in and the lady came in to discuss what the valve does and how it works. The way it works is it allows her to breathe in through her trach but NOT exhale through it. She then is forced to move air past her vocal cords and out her nose or mouth. This is a completely new way to breathe for her. Considering she has now learned to breathe solely through the trach. When we tried it the first time, she looked panicked like she couldn't breathe and the shot a bunch of snot out of her nose. We took the valve off and then suctioned her clean. Then to add to things, our suction machine broke. As you all may know, I suction Sophia all day everyday. Its all I get done. We could not do anything further until we had suction. Luckily, we were in a doctors office however we can not drive home without suction in the car. So that put a halt on our visit. I had to call the company to replace the machine but they couldn't get to us for 5-6 hours. So thankfully, my sister came to the rescue. Kelsey is always clutch. She drove to Riley to bring our backup suction from home. The company came to our house the next day to replace the broken machine. Once we had the suction sorted out, we attempted the valve again. This time she didn't seem as panicked and was releasing some air through her nose, but not enough. All of a sound she exhaled a deep breath and shot the valve straight off her trach and across the room. The speech therapist said at this time she doesn't feel Sophia is ready for the valve and we would discuss it more at our next pulmonary visit. Ugh. I had a feeling. I didn't except her to start making sound right away, but I was hopefully hopeful. It is a little disappointing and heartaching to know we have to continue to wait. I completely understand the need to timing and safety but I still have questions. I guess those will be answered at our next visit. Thank goodness that is next week. This month we officially, have our vision and hearing screens as well. We also will be visiting cardiology this month to follow up on her heart issues. 

(God, to hear that Laugh...)

It's been exhausting, It's been up-lifting, it's been surprising and its been expected. It's been wonderful, its been loving, its been joyous.  Its been a PROUD few days. I have to say all in all these past couple of weeks/days have been surprisingly great. A few steps forward..wait many steps forward and a few hold ups for the moment.