THANK YOU

This is a very special post that goes out to all of the kindhearted, supportive and loving people John and I are fortunate enough to have in our lives. Words alone cannot express just how grateful John and I are for the love, support and prayers we have been receiving on behalf of our sweet Sophia. Nothing has warmed and humbled my heart more in these desperate and heartbreaking days as all of you have with the kind words and kind gestures. How wonderful it is to be apart of two amazing little communities that have come together for the greater good of a little gal in need. I am honored to be from my little town and now I am just as honored to be apart of John's little town. The best people come from small places. The support and love we have received from everyone is simply overwhelming. If I am not crying over something at the hospital, I am crying again tears of joy and appreciation from those around me. Throughout, this entire experience I have learned a few things and have done quite a bit of soul searching. One of the best things I have realized is that people truly are good. Few and far between do people take the time to appreciate the little things in life or go out of their way to do a kind gesture for a stranger or even a close companion. Those little things matter. Those little things help the human race love one another. Be kind to one another because in the end it matter to someone. In the end it will make a difference in their life. If I have not yet had an opportunity to thank you in person. Please know you are in my heart and I am profoundly grateful for the support, love, and prayers. However, I am more grateful to know I have amazing people in my corner. Amazing people, that I cannot wait to introduce to my daughter. Amazing people, that have come together in love and support for a little girl in need. I am so blessed and proud to be the mother of a very special little lady. I am even more proud to me able to share that special little girl with the world. I truly believe in my hearts of hearts I was meant to have Sophia and Sophia is meant to change the world. She has already changed mine in so many ways. I hope she may bless your lives just the same. Again, from the bottom of our hearts John, Sophia, and myself are so thankful for all of your support, love and prayers. For each of you that has contributed to the cause, has proudly worn a Sophia bracelet, for the cards/gifts, well wishes, the meals,  and the prayers my heart is bursting with gratitude,  my eyes filled with tears of joy, and my face shines with a smile of love for all of you who have touched our lives. Thank you for believing in a little girl who I hope someday will continue to surprise the world.

I also want to give a very special THANK YOU to those involved with the Silent Art Auction in Attica in Sophia's honor. I am completely moved to tears by the overwhelming support and love my family is receiving on behalf of our sweet girl. To see an entire town rally together in support of my baby girl is something that fills my heart with so much pride and joy. I love seeing the pictures and hearing the stories of people making artworks and doing great things in honor of Sophia. Last weekend, my family came to visit Sophia at home for the first time. With them, they  brought a special gift. A gift I will treasure always. In light of the upcoming art show, they heard of a young boy that had drew a picture of Sophia. When they saw the drawing, they knew they had to buy it from the boy for us. The young boy did such an amazing job of portraying Sophia. Great talent. What makes the drawing and story even more special  is in replace of her trach  the boy drew a heart-shaped necklace. Tears, just tears. How moving it was to see his work and hear his story. Then, the next day the young man turned around and donated that money back to Sophia. If that doesn't bring tears to your eyes and compassion in your heart I don't know what else will. I cannot wait to meet and give a great big hug to this special young man for the special and priceless gift he has given us. I wish I could be there to give everyone a great big hug that has been apart of this Art Show. I just cannot thank you enough or find the right words to express my deepest gratitude towards you all. I sincerely wish Sophia, John and I could be there to share in this wonderful day with you all. In time Sophia will be up to long travels and we will be there to give big hugs to our big supporters.

Many hugs and lots of love,

Amanda, John and sweet baby Sophia

Life at Home...

Life at home is wonderful. Super busy, but wonderful. The first day at home was a bit of a blur. A joyful blur. We were greeted at home by our home healthcare team of nurses and administration as well as supply companies, RTs, and the oxygen man. I was quickly swept away from the moment with a million papers to sign. Our home nurse left early that afternoon to give John and I some family time. Later that evening we all slept on the living room floor together. It felt so good to be that close to each other and safely under one roof. We came an official family of three that night. My heart felt whole again. The rest of the week was filled with phone calls, arranging appointments, dealing with missing medical supplies, working with the home nurses to learn Sophia's routine, and John and I adjusting to our now mommy and daddy roles. At home we are able to put our MD badges in our back pockets, but we still whip them out time to time. Evenings are busy for us. Sophia's nightly routine is quite tasky. Getting her transported to her room with her all her gear takes a minute. Then we start our nightly routine of trach gauze changes and care, gtube care, tube feedings, clothes changes and bedtime stories. Followed by getting up and down all night to answer monitor and vent alarms. Sophia has been alarming her apnea monitor 3-5 times an evening. I've already spoke with the doctors and they have came to download the monitor but for now we just have to keep watching her. She also likes to keep us on our toes by disconnecting her leads and knocking loose her vent tubes. Talk about an adrenaline rush in the AM.Thank goodness for great home nursing during the day. It is wonderful to have the extra hands and eyes to help out around the house. It also allows mom and dad to get a few peaceful/worry free hours of sleep. This first week at home has already gone by so quickly. We have even had our first doctors visit already. We went for our well baby screen with our ped doc. That was definitely a test run for getting her in transport mode and all packed and ready for an outing. It certainty takes patience and organization to get her packed up and ready in a somewhat timely manner. We really are never going anywhere fast. We literally started to get her ready to leave the house two hours before we needed to leave and made it out the door just in time for our appointment. Loading that wagon is seriously either going to make me super strong or make me through out my back. Not to mention my car was packed to the brink. Sophia's poor nurse was cramped in the back. So needless to say, John and I went looking at vans today. Yup, VANS. I told my husband to face the facts, we are old and we need a van. With all of the craziness this week has brought with adjusting to home life and dealing with missing medical supplies.  Nothing at all compares to the feeling of being able to turn around and see my baby at any given moment and walk up and kiss those cheekies. Having the ease of mind and heart of being together is a gift.

HOME SWEET HOME

WE ARE HOME!!!!!!

We are all finally where we belong and loving every minute of it!!!

Tomorrow, Tomorrow...

Tomorrow, Tomorrow, I love you Tomorrow, you're only a day away!!!!!!

I don't think I have ever anticipated a day more. No birthdays or Christmases (ok maybe my wedding day because ultimately that led us to here) but no day truly compares to this dearly desired day of bringing our sweet baby girl home from the hospital. Tonight, John and I are spending out last night in the hospital with our baby girl. Riley has been a wonderful place to be and has given my daughter everything she needs, but now she needs to be home. I have butterflies. My eyes go instantly misty thinking about that drive home. There are no real words to express the excitement John and I have about being able to finally start writing that new chapter of our lives we had start so long ago. 110 days ago to be exact. We are ready. The instant we pull in the drive and see our home and walk through that door I may weep like a baby. I may need to be the one carried into our home:) Being able to bring Sophia home is a miracle I am so honored to be given and to share with my husband. Getting Sophia home has been half of the battle. So many times the odds were against her and her recovery days many. Sophia has climbed that mountain and we have now reach the point, the plateau that leads us to home. Though Sophia's journey may not be over, she has conquered so much already. She has made it home. So goodbye Riley, we are forever indebted to your hospitality, your knowledge, your compassion and your people. But for tonight, Sophia, John and I will be quietly sitting and smiling as we imagine what tomorrow may bring. Tonight will be our last night in Riley. Tomorrow we are going home. 

Prayers for safe travels home tomorrow and that everything goes smoothly as we transition to our new "home" lives. 

Sophia, I hope you love your new bedroom....it's been waiting for you!  

Just checking in...

Whoa....what a week already! Training is going great. Exhausting but great. I was actually at the dentist today and was talking about Sophia and the doctor stopped me and says "wait are you a nurse?" I will take that as a compliment. With all of the training, being there everyday and sitting in at round table meeting with doctors, I'd say I picked up a thing or two. I am officially making myself a badge that says, Mom MD. Sophia is doing wonderful. We have successfully weened her off of a rate on the vent and she is now two days on CPAP. CPAP still comes through the vent machine it is just a different setting that allows her to breathe on her own but gives her airways pressure to stay open longer. Today, Soph went down for a swallow study with daddy to watch how she feds and swallows. She failed right off the bat. She has been trying the bottle twice a week and not really taking much and sometimes just pushing it out. Yesterday, the introduced rice and she swallowed that a little easier. Today, during the study you could see on the x-ray as soon as she swallowed it went down her windpipe. This means she will continue on gtube feedings and they will lessen the feeding practice to twice a month to avoid the continual aspiration. This means her swallowing abilities are there but something with the anatomy isn't quite ready yet. Tomorrow starts the 24 hours shifts for our other caregivers. This also means 48 hours of mommy not seeing Sophia. What in the world will I do? I think I am going to have to break a rule or two and sneak in for a visit. John and I have to finalize the house preparations for Sophia's arrival and we are also planning one final worry free date night. We miss each other a lot. With his work schedule and me being at the hospital with Sophia, there is not much time for us. This is also another important reason why it is going to be so wonderful at home. Home is where we belong. Home is where we can be a family. Home is where the HEART is:)

So for now we wait, 3 more days!! But for now, I sit and wait for the equipment delivery guy for Sophia's medical supplies. They better show up. I will not have anyone holding this momma up on getting my baby home. :)

Continued prayers please....and you better say one for the delivery guy too if he decides not to show up ;)

A Story Worth Sharing...

Today, my aunt spent the day with Sophia learning her vent care. Towards the end of their day, a doctor walked in and asked if it would be okay if a family could meet Sophia because their baby was about to have a tracheotomy. The mother was already hysterically crying upon walking into Sophia's room because of the fear for what may lay ahead for her baby. Then my baby just shined. Tammy said she hammed it up for that family. She was all smiles and laughing. My aunt swears that Sophia was trying to show that mother that everything will be okay. In that moment, my sweet baby was able to bring a smile to that mother's tear covered face. In that moment, Sophia's smile was able to soothe the fearful mind of a distraught mother. When my aunt told me this story, my eyes immediately filled with tears and my throat lumped up. I, in that moment, was so proud of my baby girl's strength for she knew a smile was all that mommy needed. Then I got to thinking, I remembered how devastated I was to see my sweet baby after for trach surgery. How helpless and fearful I was for what my baby had and will have to go through. I was thinking how wonderful it would have been to meet a baby like Sophia to reassure me everything was going to be okay. Then it dawned on me, I have that sweet Sophia and she in fact did let me know everything was going to be okay. As you may recall, Sophia developed facial palsy at 3 weeks of age. 3 days after her first full smile. I was heartbroken to think that that smile was stolen from me. It wasn't until the week after Sophia's trach surgery did that smile start to reappear. In thinking back, I believe with my whole heart that that smile came back to me in one of the worst times of my life and it came back across my sweet child's face to let her scared and anxious mommy know what "Everything will be OKAY". Now, I am so grateful and blessed in knowing that that same smile can make another mommy feel relief in knowing we are making the right choices for our babies and that in the end...everything will be okay.

HOPPY HOPPY Easter!!!

Hoppy Easter from Sophie Bug

I would like to wish you all a very special and happy Easter from my little family to yours! I hope your days were filled with laughter, family, and good blessings.  John and I had a wonderful day with our baby girl today! Mommy got to play dress up and use props for photos lol. Sophia will surely be mad at me for that some day:) Sophia was such a doll in her Easter dress. Oohh too cute! We read Thumper books and the story of Peter Rabbit too. Sophia was a big helper during story time, she was helping me hold the book up. I would  have to say our day was a success. Quality time with great people, pizza, and pictures= our first Easter together.

I mean really...can she get any more beautiful! 

Last week and this coming week have been and are going to be super busy for us. Last week, we all started our vent classes and each day after have been completing our vent check offs. This weekend John and I started our 8 hr shifts. During my 8hr shift on Friday, I had to pack Sophia in the wagon and connect all of her gear in transport mode. The nurse let us go on a little walk and to my luck Sophia and I got to see the Easter bunny. I was by far more excited than she. I even ran all the way back to the room to get my camera for the occasion. Sophia, however didn't seem to impressed. I, however will always remember our first Easter bunny sighting. 

Saturday, John completed his 8hr shift and may I say wonderfully at that. John really is an amazing father. He is very attentive, caring, and compassionate when it comes to Sophia. However, when it comes to poop pants that is another story:) In all seriousness, he is just great. I know I have said it time and time again, but I just never knew how much I truly am in love with this guy until I saw how much he loves Sophia. Saturday my family came down and helped me clean my house top to bottom. I can not thank them enough for always being there for me and now for Sophia and John. They are my rocks! I LOVE GUYS! Tomorrow, my aunt is completing her vent check offs and then her 8hr shift the next day. Followed by my 24hr shift back to back with Johns 24hr shift. Then Friday through Sunday John's mom and my aunt will be finishing their back to back shifts. This week is going to be so busy. This week is going to be our last week in the hospital! OUR LAST WEEK IN THE HOSPITAL!!!!!!!!! While everyone is completing their shifts, I am not allowed to be at the hospital because only the caregiver that is training during that shift is allowed. Not being allowed up during their times is going to force me to get some of the things I need to get done at home for Sophia's arrival. This is going to be really hard on me because I am not use to going so long with out seeing her. I just plan on keeping myself really busy on my off hours by preparing for when I get to bring her home.I think I may try to pencil some sleep in there somewhere also. I have already been lacking in the sleep department for sometime now but perhaps this is a good time to catch up. I do not foresee getting much sleep when she is home due to the continuous beeping of alarms, buzzing of vents, and general worry. So I may try to get some of that this week, MAY is the key word. I just cannot believe it is finally in reaching distance...HOME.  7 days from tomorrow and she will be at home cuddling with mommy and daddy on the couch! What bliss will that be. What an uplift off of my shoulders. What a smile does just thinking about this that it brings to my face. What a treasure to be able to bring life into this world and be able to enjoy her in the comforts of a home. So for now, I will be making to do lists and counting down the days and preparing for the arrival of our bundle of joy all over again. 

Happy Easter from my family to yours! 

My prayer for each of you is to remember to cherish the little moments this life has to offer because one day they will be the big moments.

I believe in the better days...

As if yesterday couldn't have been more wonderful. Instantly after I hit publish on my last blog, my husband called me and said "Meet me at the elevators". I thought to myself, wow he is finished with training already and then an urgency rushed over me. I threw my laptop in my bag and dashed to the elevators. The hallway doors were left open and when I looked down the hallway, I saw John pulling Sophia out of her hospital room into the hallway in her bright red wagon. Instant tears filled my eyes and my heart smiled at the sight of my daughter and husband walking out of her hospital room. We met in the middle of the hallway! What a beautiful moment. We got to take Sophia on a walk around the hospital and wait it gets even better...we even got to take her on a short walk outside! Tears and not a one from Sophia. She just loved it! She just looked around the whole time. She was contently happy and John and I could not have been more humbled as parents. People are right when you say it may take hardships for one to realize and cherish the little moments in life. They are absolutely right. That little moment will rest humbly in my heart forever.

HOLY COW HOLY COW HOLY...let the countdown begin

I have the greatest news I think I have ever written on here so far... WE HAVE AN OFFICIAL DISCHARGE DATE!!! We have a date to go HOME!!!! I am so happy I am just crying my eyes out right now. I mean seriously, I need to take a minute to wipe my eyes because it is getting hard to see to type!!!

We just walked out of our discharge meeting and we are planning for that drive home on APRIL 16th!! I just can not believe its finally really happening! Really, I am so excited I am shaking and can't get that nervous/excited feeling out of my stomach. AHHHH a date to go home. 13 days from now and we will finally be able to take our baby home from the hospital! 13 days from now and we will be home with our daughter and our family will be whole. 13 days to plan and prepare our home for Sophia. 13 days to finish our vent training and care shifts. 13 days and we are home! Is it nature I am starting to freak out! 13 days and everything is changing! We will be home with our baby! What a blessing. WHOA we can do this, we can do this. I am freaking out because I feel like I have so much to plan for and so much to get ready and in reality the staff at the hospital is arranging everything (medically) for me, but the planner (mommy) in me can not relax. Right now, I am on cloud 9! What wonderful news to finally hear, we can go home. I have a million things and emotions running through my head right now. It easy here at the hospital. If something goes wrong or I am not sure about something, I call for the nurse. At home, its Mom MD and Dad MD on staff. I am so glad I have John reassuring me and giving me the confidence boost I need to know "We've got this" and "We've got each other" Team Rhodes all the way!!!! I think I am just completely flabbergasted that we actually have a date to go home. The end really is in sight. Home really is on the horizon! I cannot wait to write on here we are heading home, the drive is happening, no I cannot wait to write on here, WE ARE HOME! AHH! HOME! Have I mentioned that I cannot wait! Now, no one mention the "H" word in front of Sophia. We can't jinx the date! Everyone please please pray and send good vibes that we stay on the homeward trail and reach our official date of departure! I don't know who is going to be more happier with the news Sophia is going home, Mommy and Daddy or Sophia. I can safely bet it is Mommy and Daddy for sure. Ok I am going to go finish crying now. TEARS of joy, I swear it!

The countdown officially starts now... Sophia is going home in 13 days!!!