What a difference a year can make!

^{One year ago today, December 15,2011, I can safely say was the worst day of my life. Scarlett had a coughing fit, and I picked her up because I thought that she was upset and I was trying to calm her down. Her nurse returned from getting her medications and immediately called for the cardiology fellow because she did not like what was going on. As I leaned her back, I had been holding her up to my shoulder trying to comfort her and as I leaned her back, I saw that her body was completely grayish white and she went completely limp. Athough, what was happening did not set in until I had to borrow the hospital's phone to call my husband to the hospital, since my cell was MIA at the time, and I could barely udder the words while Scarlett's social worker and case manager stood at my side hugging me, simultaneously her room filled with doctors, nurses, a crash cart and finally a ventilator. They never once asked me to leave the room, and for that I was grateful. They explained every medication they gave, every line they put in and everything that was happening on her monitor, again, I was grateful. Scarlett had gone into an arrhythmia, her oxygen saturation dropped into the 20's  and if the combinations of medications that they had given did not work, they were standing by with the paddles ready to shock her heart back into a normal rhythm, she had already been paralyzed, sedated and intubated and a nurse or doctor, honestly a lot of it is a blur, was breathing for her with the bag. Thankfully the medications worked. After this happened, what was going on finally hit me when they told me to have Justin bring Noah, they were not going to deny him seeing his sister whether he had a cold or not and we had to wait for him to see her because they had to turn her room into an operating room, essentially, to get a central line, which ended up being an 8 french double lumen in her right Jugular (her neck). That night one of the phone calls I made was to our amazing military extended family in Germany and they called the hospital and had a care package sent up, which included a rainbow balloon (they didn't choose it either, I will explain this in a bit). The bag arrived after I left for the night and I saw it the next day, which both brought me to tears and gave me a sort of peace with everything that was going on. Two days later, on December 17, which happened to be our seventh wedding anniversary Scarlett's military cardiologist came to Children's to see her and this is when he told us that our only option at this point was a transplant because Scarlett was having "mini heart attacks" and it was damaging her heart, so for the next few  days she remained intubaded and the next few weeks she remained sedated.
 
On to the meaning behind the rainbow, the first time we had recieved bad news after Scarlett was born was the day she had her first cath done, we found out that day that her coronary arteries were not properly formed and she would likely need a transplant. This is a tough pill to swallow about your 4 day old baby. On our way to bring Noah home and go eat dinner we saw a rainbow that seemed to be right over our house as we saw it the entire drive home, and for some reason it gave me an inner peace. The day that she had her BT Shunt placed we saw another one. And as the Lord said to Noah 12} And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: ¹³ I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth.  


We took this as a sign that everything would be okay, and it was. Then after she coded the rainbow balloon stared me down in the darkest of times and made me believe that everything would be okay. As we found out we would be headed to CHoP I turned around to see a bright, full, double rainbow outside of Scarlett's window in her CICU room, it was the brightest, biggest one I had ever seen! I just knew that somehow, everything was going to be okay. When Scarlett is having a tough day, I usually see a rainbow, be it in a reflection of something, on tv, somewhere somehow I see one and it helps me calm down and know, that no matter what happens and what journey we have to go on, everything will be okay.

This is the double rainbow. Keep in mind this is through a tinted window.

That eventful day in the CICU at Children's we had one of our favorite Nurses, Michelle. In January I got an email from The Hope Marietta Foundation asking for Nominations for Nurse of the year. I, of course, nominated Michelle and she won. The way she  responded that day and how quickly she reacted to her gut feeling saved Scarlett's life and for that I will always be grateful.

Now, 366 days later {don't forget it was a leap year ;-) } Scarlett is a happy, as healthy as can be, active, talkative 16 month old. You would never be able to tell the journey she went on this past year by meeting her. She is the happiest baby you could ever meet

So Many New Things....

There are so many new things going on! First not having to go to Cardiologist visits every month, we are out to every 6-8 weeks,Woohoo!! Second is hearing her cardiologist say "she looks great!" when we bump into him randomly around the hospital while there for other appointments. Then comes the new things Little Miss Scarlett is doing. She now waves hi and bye, she blows kisses and is babbling like there is no tomorrow!
Yes, I know every parent is full of pride and joy when their child does something for the first time, but a whole new level gets added to that when it is something that you were told they would never do! When Scarlett was about four weeks old and still in the hospital recovering from her first surgery, the genetics team sat down with us and told us that our beautiful baby girl was likely deaf. I did not believe them, I just knew that she could hear, but there is always that part of you that goes "what if they are right?' My heart was heavy that my baby girl may never be able to hear my voice, or her Daddy or her big brother. I never gave up hope that she could, I still sang, talked and read to her like I would have if I had never been told of the possibilities. As she grew older she started to make eye contact and tracking and I was convinced, at this point, that she could hear even though she failed her hearing test time after time. When she was in the hospital the second time, sedated I would sit and sing and read to her and tell her about everything that Noah did that day. By 6 months old she still had not started to coo or "babble", so I started to get a little nervous. While she was in the NICU at Walter Reed they thought she had an ear infection, but couldn't see into her ears, up until this point at her well checks her ear canals were too tiny for them to even try to look into, so the ENT doctor did an exm with a microscope. The result: Ear Canal Atresia, her Ear Canals do not open all the way to her ear drums. After this discovery a different type of hearing test was performed, where they send vibrations through the skull and she responded almost perfectly to that one! Several months later, in June, she recieved her Baja, a bone conduction hearing aid. Here we are now on December 7 and she has finally started "babbling", and creating consonant sounds. She has been "OOO" and "AAA" ing for a while, but we wanted to hear the consonant sounds and today we got them "dadadadadadada" and "babababababa". I could not have been happier to hear my baby girl talk! It is an amazing feeling knowing that the trouble of her hearing aid (somedays) is worth it!

Scarlett wearing her Baja and riding the train with her big Brother Noah.

I am still working on the one year post,patience please, the pictures are giving me soo much trouble! :)