Happy First Birthday

At 8:54 am on this day last year, our sweet baby girl bore her way into this world. 6 pounds 12 1/2 ounces, head full of dark hair, beautiful lashes, perfect. In an instant, you changed the world as we knew it. In an instant, you gave love to our lives we've never knew before. In an instant, you gave us strength we could only imagine to possess. In the instant you were born, our hearts grew with pride, excitement and curiosity to meet you. Within moments, that excitement grew into a weary smile as they whirled you way and within the hour you were on an ambulance heading to Riley. Anxious, Joy, Confused, Fear, Need, Empty. Finally, at 9:30pm, I was wheeled into a crowded NICU to see my baby girl for the first time. I remember saying, "I am not close enough, I can't get closer". Then a calming nurse laid her hand on my shoulder and said, "Would you like to old her".  An exasperated YES fell from my lips. MELT. My heart instantly melted for you. I was finally able to look into your sweet face and feel your warmth in my arms. Changed. In that instant, I was forever changed. I was a mother. You were perfect for us. Joy, Pride, Beauty, Hope, Strength. They say, all at once the world can overwhelm you and in an instant you are changed forever. No words were more ever truly spoken. Words alone cannot describe the emotions we have felt this year. Above all else, I feel overwhelming joy and pride in being your mommy. Sophia Kay Rhodes you are our light, love, hope, and strength. I would have never imagined what this year was going to bring us walking into the OR that morning. Our family has made it through the highest of highs and the lowest of lows. Sophia you have given strength we never knew we had and a greater love than we knew was possible. I couldn't be more proud or love you more. Happy First Birthday Sweet Girl! I cannot wait to see what lies ahead of us next year.

12-27-11

1 month

2 months

 3 months

4 months

5 months

6 months

7 months

8 months

9 months

10 months

11 months

12 months

Nom Nom

Well, many of you may have been long awaiting the results of our swallow study (much as we were). Instead of telling you the results......

                                   

During the swallow study, I have never been able to feed Sophia more than a few drops of food before they have asked me to stop. This time, they had me feed her with the dropper then with a baby spoon and finally they said "Let's try some yogurt, too". After a few bits of the yogurt, which Sophia made a sour face towards, they walked over with the best news ever. They told me, I think Sophia is ready to start eating by mouth!!! I cried happy tears instantly. What a thrill. They went on to tell me that Sophia could eat one tablespoon, three times a day. They want her to eat baby food purees, yogurt, pudding, mash potatoes, and even ICING for her birthday was OKAYED!! Well a few hours passed, we were upstairs at our pulmonary visit and the nurse came around and said "I don't want to do this, but I have bad news. The speech therapist called and said to put the feedings on hold until the doctor reviews the video again." Talk about the worst "take-back" EVER. I was on cloud 50 million about our previous news and now I felt like someone hit in right in the gut. UGH. So now we wait, we ended up waiting until today to find out the news, mind you our appointment was last Thursday before the holiday weekend. However, today, I finally received word, that Sophia in fact HAS THE GREEN LIGHT to eat by mouth. This time, it is only two tablespoon per day. One in the morning and one in the afternoon. If there is any signs of aspiration we are to stop and call the doctor. Today, Sophia's Daddy and I fed her her first couple bites of baby food. It really is an undescribeable feeling. To be able to parttake in what many would think was a mondane activity with your baby, to us is a miracle. A true treasure. Eating is so social. So normal. It is amazing to be able to introduce Sophia into this new world of foods with TASTE. However, small a victory this may seem, too us this is HUGE and we couldn't be more happy. It came right at the perfect time too, Sophia turns ONE YEAR OLD tomorrow and now she may enjoy in smashing her cake and eating the icing. That in itself is gift enough, especially to this mommy. 

Sophia's pulmonary visit also went very well. For now everything remains the same, in two months if everything is still good they are going to order another bronch to check her airway for collaspe. If her airway still looks clear, they will order a full day sleep study at Riley. We will check-in during the morning and once Sophia goes down for a nap, they will take her trach out and see how she sleeps. If she does well during her nap they will take it out and watch her sleep all night without it. If she passes that, we will go home that next morning without her trach. If she fails, the nap we start over a few months later. This is amazingly surprising news. If everything goes as planned, Sophia could have her trach out within 3 months. Wow! What a whole new world that will bring. Keep the prayers coming, you know I had a revealation as well, if you don't believe in the power of prayer, I hope just knowing Sophia's story can change her hearts and minds. 

Merry Christmas

From our family to yours, We wish you a very special and very Merry Christmas and a Happy New Year!!!

Can you HEAR that?

December 10, was a very anxious and exciting day for us, Sophia got her first pair of hearing aids. Purple hearing aids of course. If you got to have them might as well be styling, am I right? She did wonderful. The left aid fits perfectly and she goes on about her day of play as if its not even there. That is huge for a baby! The right aid is longer because she needs extra power in that ear and it doesn't fit well and needs to fall out or have extra feed back. They can't adjust the aid because it fits the inside of her ear just doesn't stay behind her lil floppy ear lol. I am sure we will figure something out but in the mean time the left one is working great and that is the most important thing. As far as telling a difference in her hearing it is difficult to tell right away, however, I am noticing her reacting to more sounds and quicker response to others. Time, like always, will tell. I was so afraid they would just look awful on her but quite honestly, they are so cute. From the front view, they are barely noticeable and from the side you just see this tiny purple "blue-tooth" (as daddy calls her new gear). She is precious. We have two new therapists coming to work with her weekly now for auditory and listening development and possible signs. Our hope is that her left ear provides her with enough sound that she can distinguish speech sounds and learn spoken English. If not, we are more than willing to learn a new language as well. It a possibly she will just do both. One of our therapists is deaf herself, since age 4, she speaks great and as of three years ago finally opted for the cochlear implants. I think she is going to be a great fit and be able to provide us with lots of personal assistance. As far as the implants go, we may decide to let Soph make that decision as she gets older and we see what her hearing needs are. As of now, we are watching her and learning a new world right along side of her with her hearing aids. 

So Much Thanks To Give!

Day 27: I am thankful for my 11 month old baby BIG girl! Times are flying and our worlds are changing. She has brought so much joy into John and I's life despite all the obstacles we faced we couldn't be more happy or more in love with her. I can't believe she is going to be ONE next month!

Day 28:

I am very thankful that Sophia's 7th surgery was a success. We even got to go home that night for the first time after a surgery. They were able to open her airway in her nose more and down-size her trach. Down-sizing her trach is the first steps to getting the trach OUT!! 

Day 29:

 

Yeah, I am pretty thankful to see this... Despite laying in a hospital bed for 5 months and all the challenges in her way, Sophia is growing and developing stronger and stronger by the day. It makes my heart smile when I see her so proud of her own accomplishments. She knows she's a BIG amazing little  baby girl! 

Day 30:  It comes an end to the month long of giving thanks, but there really is no end in how thankful I am for my family, my friends, and the life I have been giving to live. I will continue to give thanks daily for all this beautiful bitter sweet life has to offer me. I hope you all do the same. It is easy to get down on one's self and see the bad in the world, but it takes someone special to force a smile and give a smile to those that make it hard to do so. Choose to look at life and all its riches that are out there for you to enjoy in a new light this year. You may be surprised the best year/s of your life are ahead of you. Enjoying life is what makes life worth living. I am excited to see what life has in store for my family of three in this coming year. 

Nostalgic

Day 26: I couldn't help but to feel nostalgic yesterday while my family was putting up the Christmas tree together. I was feeling sentimental for a few reasons really. one is because I just love this time of year, I love everything about Christmas, the trees, the lights, the smells, family gatherings, baking, crafts, gift giving, and even the music. I am so happy to share our first Christmas as a family with Sophia. Having a child makes Christmas even more special. I am looking forward to starting many traditions with her. It was so cute to watch her eyes brighten as we lit up the tree. We placed her right in front of it and watched in amazement at her as she watched the tree take light. We need a little Christmas now. I was also very nostalgic because last year our Christmas tree took on a whole new symbolic meaning to John and I. Sophia was born two days after Christmas. Instead of hurry to get it down before her birth, we wanted to leave it up for her to see when she got home from the hospital. Needless to say our homecoming was delayed. So for us and our lives at home, our world stood frozen in time. Our tree remained up and untouched until we finally had word that Sophia was coming home from the hospital. Finally, at the end of April we took our Christmas tree down to prepare for Sophia's arrival home. It almost didn't seem possible that it was time to put the Christmas tree up again, but up it is and I think the tree is going to take on a whole new symbol this year. Symbolizing a family home together and a little Christmas magic. We have already received some amazing news this holiday season with Sophia coming off the vent and today we received a little more Christmas magic. We visited Sophia's cardiologist today for an ECHO and the results are miraculous. The HOLE in Sophia's heart CLOSED. Thank you Lord. The doctor explained that generally at a year the hole's will not close on their own and would need surgery. I knew this going into the appointment today and I was floored with surprise that it had closed on its own. Wondrous news. She also said the bicuspid valve is still present but mild. We will continue to follow that next year but she said it could be years and years or not at all that Sophia will need a procedure to correct it. I am just so happy with all of the news we have been getting lately. I hope and pray it continues especially into next months appointments, they're some biggies!

Our Tree in April 2012. We finally took it down on April 7, Before Sophia came home from Riley on April 16, 2012

 

Our tree, 11/26/12

 

So Today, I am thankful for Christmas magic and for my daugther's amazingly strong heart!!

Catching up...

Day 21: I am thankful for my love for arts and crafts. I really enjoy a nice, quiet, relaxing day of making things with my hands. Its good for the soul... and it just makes me smile when I see my finished product.

Day 22: THANKSGIVING! I am thankful for good food, good friends, good family and making good memories.

Day 23: I am thankful for love. I still get so excited to go out on dates with my husband. I am also thankful for good friends who have been there to lend us a helping hand when needed!

Day 24: I am thankful for simple days. I am thankful hidden blessings. I am thankful for the power of prayer. I am thankful for this life I live and the people I share it with.

Day 25: I am thankful for medical insurance. Without it our family would be upside down in medical bills.  I am thankful that after a month of waiting, our daughter is finally getting her hearing aids.

Therapy for the Heart

Day 20, Today I am thankful for Sophia's First Steps Therapists. In such a short time, they have helped Soph with so much. It seems like each week she is learning something new or reaching a different milestone. Her therapists are so supportive of Sophia and us. Their encouragement alone does so much for us, especially me. Some days, its hard not to get the breathe taken right out of you when you see a child Sophia's age doing so much more. One cannot help but to compare and think wow are we missing something. Then a few encouraging words and one new trick later from the therapists and I am instantly put back into perspective. I know Sophia is doing amazing given the start of her life was beyond difficult. Think, just days ago she has finally come off the vent!! The doors are wide open for her and her therapists are there to help her soar through them and uplift us all. So, thank you to all the very special woman that come into our home and work with Sophia weekly. You are not only coming into our homes for a job, but you have come into our hearts with great support and admiration. Thank you for your services.

Hmmmm

Day 19: Even on days like today, I can still dig deep and find thanks to give. Some days are more stressful than days before but one think I draw strength from is knowing that somewhere someone is dealing with something far more stressful than me. So today, I give thanks for a humble heart and today I will say a prayer for the someone's somewhere...

A Mother was Born

When a child is comes into the world, many gather and celebrate the birth a something wonderful. However, many over look that on that day, not only was a child born but a mother was too born. It truly is one of life's greatest gifts to become a mother. I have grown and transformed into the role almost instantly and without hesitation. I am thankful everyday for my new life's role and I thank Sophia for making me into the mother I have always wanted to become. Much like a baby, I am still growing and learning and gaining my balance in my new life but I am enjoying the adventures ever so much. So today, I am thankful for the gift of motherhood.

Family Gatherings

Day 17: I am thankful for getting together with my family. Though I may not live as close anymore I still love going home and the feeling I have getting my family together. No matter the time or distance apart it feels as if we never parted. My new favorite thing when we get together is seeing how everyone lights up when they get to see Sophia. I swear I have never heard my papaw giggle so much as I do when he is around Soph. I love you all always!! 

In Her Eyes...

Day 16: I am thankful that (as far as the doctors can tell) Sophia has great vision. I never doubted she can see and those around her know the same, but it is always refreshing to her the doctors tell you again. Of course, the will continue to watch Sophie's eye sight carefully over the next couple years and so on. We won't be able to tell her vision exactly until she tells us, but boy do I love those baby eyes!!

ARE YOU READY...

ARE YOU READY.....






The Sleep Study results are in....



SOPHIA CAN COME OFF THE VENT AT NIGHT!!! NO MORE VENT!!!!


BEGIN HAPPY DANCE...

                                              And begin wiping happy tears!!!

By far on of the best phone calls I have received in months. Since Jan 31, 2012 Sophia has been on respiratory support provided by the vent. We have been off the vent during the day for months now. We have had one previous sleep study in August to see if she was ready then but the results didn't come back as hoped. Now after a few months and another sleep study, Sophia is ready.  This has been a long time coming. It has been a family struggle dealing with the vent. Recently (even more than before) it has led to many restless nights and panicked hustles to change her trach in the middle of the night. Now finally, we can DITCH THEVENT. I know Soph is going to be just as happy as we are to get some easy rest. She has been rolling and turning a lot in her sleep lately. Kicking the tubes and getting wrapped up, tangling herself and the trach pulling out. Now we can all rest easy (with slight less worry). The doctors have ordered her to be on the trach collar at night for humidity and with slight oxygen use until our next visit then they will re-evaluate. I am perfectly okay with that. I cannot tell you the sheer joy I had when the nurse called me today. I literally jumped up and down and I think I shouted in the phone. The nurse shared in my excitement! Now, I cannot wait to share our triumph with you. THIS IS A BIG DEAL PEOPLE!! Oh man here come the tears of joy again. What a relief beyond compare. Our daughter is finally coming off of support. She is growing stronger and stronger. NOW, with the vent out at night...the real fun can begin, starting the process of getting the trach out. At our prior doctors appointment, we were told that based on our sleep study results we would then start the process of getting the trach out. AHHHHH! Exciting things are happening in the Rhodes home today. I am elated beyond belief! I am so happy for our family, for Sophia. She is my rock star and I am so so proud of her accomplishments. I must also thank you all for the extra prayers. We needed them and they worked. I just think I was going to crumble if we didn't hear the news we did today, so thank you! Thank GOD. Sophia is moving mountains people. HERE WE GO!!!

GOOD BYE VENT!!!!
                                      

The Simple Pleasures

Day 13, I am thankful for a nice warm bed to crawl into after a very long day! (and a good snuggle)

Day 14, I am thankful for unexpected refund checks that arrive just at the right times...relief

Day 15, I am thankful for easy mornings, waking up to smiles and kisses, and eating breakfast and watching Mickey Mouse with Sophie.

It really is the simple pleasures in life that mean the most...

Be Thankful!

Tis the Season

Today, I am thankful that we live somewhere we are able to enjoy all of mother nature's season. I was so excited to show Sophie that it was snowing outside today. She just stared out the window for a few minutes trying to figure out what she was looking at in the sky. I cannot wait until the days of snowmen, sledding, and hot chocolate. Joyful, Joyful! By the way, this brings me to a greater joy to be thankful for and that is sight. I am thankful that even with her vision issues, Sophia will be able to see the wonders of the world. Update, we are going to see the eye doctor on Friday, hopefully things are still going well with her vision thus far. We will also be visiting her kidney doctor, again, hoping for good news and improvements. Lastly, we are still waiting on our much anticipated sleep study results. We need these to come back good. We are ready to ditch the vent at night. Sophia and I would both love an uninterupted, good nights sleep for a change. Results should be back in a few days, prayers!

Peaceful

Yesterday, I couldn't be more thankful for quiet and peaceful evening at home with my family. It was a wonderful family Sunday. Relaxing, shopping, homemade dinners and cudding on the couch with a good show. It those little simple pleasures that mean the most, it is the simple days when we are making the most loving memories. I am thankful for snuggling lovings from my family.

My sister...

God made us Sisters, Life made us Best Friends

No words can ever describe how much I care for and thank God for my sister everyday! She is my rock, my friend, my good time, and my person. I love you and miss you daily!

How can I not...

How can I not be thankful for this...

SMILE!!!

for these things I give thanks.....

I am thankful for....

for a smiling baby in the morning
a good friend
a good laugh
a MOBIE night with my husband
a warm starbuck chai tea on a cool day
funny text pictures
simple silence
Watching my shows with the hubby
the ability to carry my baby around the house
video chats with my sister
for my sister, I miss her
a good homecooked meal
getting lost in my crafts
for a capturing a great photograph
holiday magic
for nights when I get to sleep (longing for the night without alarms)
for watching Sophia play and grow
a good cry
a long hot shower
for a roof over my head
for being able to pay the bills
for a kiss on the forehead
snuggling with my babies
for fresh eyebrows
for bagels and PLL (did I mention I miss my sissy)
for DVR
for the surise
for automatic car start
for sweet music
for making memories
for being able to love life

To the Good People

Thankful Day 7: I know I have said it time and time again, and will continue to say it for years, I am more than thankful to know that people truly are good. My family has been blessed beyond years by the out pour of generosity and goodwill we have come to know from the good people of our small towns. Growing up in a small community has been amazing. I have always felt safe, I have always felt like I have a friend, and I have always felt that there is someone somewhere to lend a helping hand. You all are truly amazing!! We couldn't have made it through half of what we have been through without knowing we had so many good people in our corner rooting us on. I have been so fortunate to meet so many wonderful people. Many of these people, I have come to know as friends. It is ironic to say, but I found so much comfort in having conversations with almost complete strangers. These people were there to lend a listening ear, provide kind words and wisdom and to even lend a good hug. I have found in so much of this that people are good, but you also find out how good the 'good' people really are. I have made friends and lost friends this year but the end results is the same. When things matter people are there for you. Those people surrounding you during those times are the people that truly matter. So, thank you again for having our backs, believing in our family and praying for our Sweet Sophia. I am thankful for small town comradery and compassion. I am so honored to be from a small town and a part of a small town today. Small towns have the biggest hearts and the best people. I cannot wait to share Sophia with all you someday!

Family Matters

Everyday of every year, I am thankful for having my family in my life. They have literally molded and shaped me into the person I am today. I wouldn't be the same person I am today without their influences growing up. So today, I thank you for being such an important part of my life today, yesterday, and forever. I love you all!

 

 

 

He makes it easy...

Today, I would like to express how immensely thankful I am for my hard-WORKING husband. I cannot thank him enough for working so hard to support our family and to keep us going during this time. He has given me the opportunity to stay home with Sophia when she needs me most and that is a one in a lifetime gift. It wasn't easy to walk away from my career but when it came down to it the choice was easy. Sophia's needs outweigh so many other things and it is because of John and his hard work that I am able to do this. It has been a true blessing to watch her grow and develop so much in the past few months she has been home.  It has been an amazing and much needed bonding time for the both of us. I will treasure these times always! So thank you John for giving me the opportunity to grow as a mother, as a wife, and a caregiver to you both. This is truly the best career move I have ever made in my young working life. It more enriching and fulfilling than I would have ever imagined.

On a side note, I am also grateful for the opportunity to substitute teach and be on my own schedule. Sophia keeps me plenty busy, but it is nice to go out in the working world and interact with adults. More importantly it makes me feel good to know I can contribute a small (very small) amount financially for our family.

You are appreciated!

Since yesterday, I showed my appreciation for modern medicine and the skilled doctors at Riley. Today, I would like to say how thankful I am for the backbone of the hospital, our nurses. I say OUR nurses because not only do they care for Sophia well being and advocate for her needs, they were their for us as well. Our nurses were there to provide a listening ear, a hug when needed, comforting silence, and strength to speak up when we thought something was wrong. We couldn't not have made it 4 and half months in the hospital and kept our sanity without our nurses. We had the privilege of knowing some of the best nurses there. They're kindness was unmatched and I trusted them with Sophia. I am beyond thankful for knowing them and to have had them care for my daughter. I am also very thankful for our home nurses. Without them I would have lost my sanity a long time ago. Without our home nurses, I wouldn't be able to do my everyday things. They also give us a since of trust and safety, it's wonderful to have someone to double check if something seems ok with sophia and to know she is in trusting hands when I can't be there. A nurse is a wonderful thing and I appreciate your calling to serve!

Today I am thankful for...

Today, I would like to acknowledge how thankful I am for modern medicine. Without the help of modern medicine and the wonderfully skilled doctors at Riley our Sophia would not be with us today. It's because of modern medicine that we are where we are today and I cannot possibly give enough thanks to these men and woman whom dedicated their lives to improve the lives of others. You, doctors, are a blessing and your calling is a miracle. I send a humble thank you to you all for your compassion, your knowledge and your skilled hands. Bless all your hearts!

I am Thankful...

DAY 1: In the spirit of giving thanks... I reading facebookers posts about their daily 'Im Thankful Fors' and thought to myself, wow I have so much to be ever so grateful for this year. So, I am going to blog my daily 'I am Thankful Fors'. First and foremost, I am thankful for knowing that my daughter is home and the sense of peace I have knowing she is sleeping in her own crib tonight. It goes without saying how grateful I am to have Sophia in my life. She has given me a gift and courage within side myself like no other. She is a true blessing to have in my life. I am thankful for her life! For the LIFE she is giving our family. I am thankful for the life I get to see grow before me.

Day 2: I am thankful for conditional love. I am thankful for the conditional love and support my husband has given to me and shows me daily. This year has proven to be our most challenging and most rewarding as a couple. Without his love and support, I would be less the person I am today. I would be half myself. So today, I am grateful for you, John.

This is the start of something good....don't you agree

Yesterday, Sophia had her first appointment with audiology to go over her hearing chart and to get fitted for her first pair of hearing aids. I cried that morning before we left. With all things in Sophia up and down road to recovery and uncovering her syndrome, the findings and discoveries are often a perfect blend of hope, weary, fear and wonder. So I cried, I often find that in getting my hopes up about things I sometimes and often am let down. Just as often as Im let down, I find I am only to be lifted by something different and unexpected with Sophia. I cried because I want to have hope that the hearing aids will work and give Soph enough aid in her hearing that she can one day talk to her mommy and daddy. I cried because I know I have to keep reality at an equal level as hope. I always hope for more for better for miracles but in reality I have to stay grounded and know there are possibilities for failures and for more procedures and different paths. So I cried. The hearing test stated that Sophia has profound loss in the right ear and moderate loss in the left. The audiologist said even with a hearing aid Sophia will not gain enough hearing in the right hear to be able to learn speech however she said it is possible that in the left ear Sophia may gain enough hearing in that ear to be able to distinguish and learn speech. As in all things, this we will not know until Sophia is able to tell us and show us how she is hearing after the hearing aids are in place. So time will tell. Sophia was wonderful as usual. She truly is the best baby. She sat patiently as they squirted this caulking like paste into her ears and allowed it to harden to form a mold of her inner ear to fit the hearing aid too. Since the hearing aids are bound to stick out like a sore thumb we ordered purple hearing aids with purple glitter plugs. Hey if you have to wear accessories they might as well be stylish, am I right? It is also my hopes that other kids and people will think they look cool and not judge her for having to wear hearing aids. The hearing aids with ordering and insurance will take anywhere from two weeks to a month to be ready. At that time, we will go back in to have them placed and programed for her hearing needs. I truly HOPE this is the start of something good, something wonderful. I am anxious to see a different in how she reacts and responds to sound. For having hearing loss now, Sophia is very aware of her surroundings and reacts and responds to things now that you would think she wouldn't be able to based on the test results. Its a fine line being aware and knowing of certain findings and results and then seeing and hoping and believing in things you cannot see and some things you do. This is were I waver between the hope and reality of our situation. I am fulling aware and willing to learn sign and help Soph in all ways possible but to hear her say mommy and to be able to talk with her as any other child....my heart as a feeling in it right now that I cannot describe. I think that is what HOPE feels like...