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

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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.