YESTERDAY WAS AWESOME!!! Our dear sweet baby no longer needs intensive care! She is stable enough to leave the NICU and go upstairs to the TCU. The TCU is the Transitional Care Unit. The ultimate goal of the TCU is to educate Jeremiah and I on how to care for Sophia Lynette while she has a trach.
Baby girl is 7 months and 3 days old! The only time that she has been in the hallways is because she is going to or coming from a surgery. The girl has stared death in the face countless times. We have cried so many times for her and with her. But today's tears were tears of joy. So many doctors, nurses, therapists, and chaplains have taken care of our baby. They have cried and prayed along with us. All of you have cried and prayed for us. There is no way that I can ever thank any of you enough. All I can do is say thank you. Please believe that the good Lord will bless you for any thought, prayer, or meal that you've provided on behalf of our family.
I say all of that to say this. Because of the incredible support that Sophia Lynette has received from us and from you, she is definitely on the road to recovery. Leaving the NICU was a big deal! Being the diva that she is, Miss. Sophia Lynette received the royal treatment upon her departure!
When I arrived at the hospital, baby girl was all dressed up and ready to go. I didn't have a bow that matched her outfit so Lisa, the child life specialist, had one for Miss. Sophia. It matched perfectly!
Leaving the NICU was bittersweet. Leaving means that Sophia has gotten better. However, the TCU is a promotion and has to happen in order for Sophia to come home.
I was all smiles from ear to ear the entire afternoon.
This is Sonny Burgess. I had no idea who he was or why he was outside of Sophia's room. Apparently, he's a recording artist in the area. I think it was Lisa that called him and asked him to come and be a part of our day. He sang "Little Red Wagon" and "You've Got A In A Friend In Me". He played a couple of other songs, too. He would remix the lyrics and substitute different words with Sophia's name. I cried over this gesture, too.
This is only a quarter of Diva's entourage. At some point these people have taken care of Diva more times than I can count!
I found Jessica in the hallway and she was usually a charge nurse. She took care of Sophia a couple of times. She was the first person to teach me how to feed Sophia through her g-button.
Regina and Angie. These two were pretty awesome, too! Regina was usually a charge nurse and took care of Sophia in her darkest days. We also swapped stories about our toddlers. Angie was Sophia's primary nurse. Basically, whenever she worked she had Miss. Sophia and did a great job taking care of our baby girl. This was actually taken on the day that our families came to the hospital.
And then the tears really came. As a mother, my job is to provide a quality life for my children. About a week after we arrived at the hospital, I saw a baby in the hallway riding in a little red wagon. I asked the nurses if Sophia could go on a ride in a little red wagon and they said no because she was too sick. As she kept getting better I would ask again. They said no again. You basically have to be pretty darn stable and on little or no oxygen. Right before we left the room for the last time, Lisa whips out this "wagon"! It completely caught me by surprise! She explained to me that she knew how important the red wagon was to me and Sophia and she wanted to make sure that we rode in the red little wagon today. It is hard core, too! It is made out of wood and I was told that it took an entire afternoon to make. I loved it!
You can't tell but her name is bedazzled!
After being discharged from NICU we were off to upstairs! Her SUMMARY discharge was 13 pages! In fact, I would not be surprised if she had several binders for her records.
Waiting for the elevator and Sonny is still singing! I hope Sophia loved it as much as I did.
We made it! Here we are in our new room and Sophia did great. She didn't desat once! Diana is the lady on the right that made the wagon. She even painted "radio flyer" on the sides. Seriously, every child should ride in red wagon. I am loving the wagon I'm tellin' you! I pushed so hard for a real wagon because it would have given Sophia a normal childhood experience. I'm not giving up. We're still going for a ride in a red wagon even if it's in November. She has earned it and totally deserves it! The point of the wagon is to give my child a regular childhood experience for once. Period.
This is Deanna. She took care of Sophia a lot in the beginning when Sophia was really sick. It was quite fitting that she was the one to walk us upstairs. Of all days, Angie was off today.
She had to be admitted all over again in the TCU. She's getting measured here and she weighed in at 15lbs! Last week she was promoted to a size 3 diaper. She can start wearing clothes on a daily basis and I'm so excited for that. We'll see how long that lasts because that girl gets hot and sweaty quick.
This is Dr. Simpson! We will forever love Dr. Simpson. She has saved Miss. Sophia more times than I can count. I'm a little nervous that we are officially off of her service. However, she assured us that we are in good hands and she said that she will check on us from time to time. See ya later doc!
The TCU gave us a bubble map and each bubble has a task or objective. Essentially, it's a check list on how to care for Sophia. Every time Jeremiah and I accomplish something with Sophia, we check it off and move on the next bubble/task. Eventually, when we get to the end, we get to take her home when she's ready. I'm sure we'll be ready before she's ready and that's okay.
Her crib in the TCU is pretty big. She is so tiny in it compared to the cribs in the NICU.
All of the excitement of yesterday's events were finally taking it's toll and baby is getting sleepy. We finally got her admitted and comfortable. She did great all afternoon! Her vitals were stable the entire time and I was so happy about that!
Mr. Man was exhausted and so was I. This was the only blanket that I could find to cover him up. Katy, a friend of mine, made it for Diva. She wanted to capture my personality as well as Sophia's and she nailed it!
Dear Sophia, yesterday was a fun day wasn't it?! One day I hope you will appreciate the time, energy, and effort that a lot of people put into making today happen just for you! It was quite the farewell and no one deserved it more than you. Job well done for making it this far. We still have a long way to go but we'll take it one day at a time. Just like we always do. I am so proud of you! Daddy and I love you very much. Goodnight sweet girl :o)
I've seen a lot of babies come and go over the last seven months and I've never seen any of them receive a discharge farewell the way that Sophia did. Those babies went home and we are only going upstairs! I hope Sophia will be able to look back and appreciate everything that so many people have done for her and her family.
Regarding her condition, her lungs are still nasty but she is getting the respiratory support that she needs from a ventilator. She's still on some pretty serious drugs but the plan is to ween her slow. We will ween her drugs by 10% on Mondays and Thursdays. We are trying to have her home by Thanksgiving but Christmas is more realistic. Ultimately, I would like for her to get to the point that she doesn't need the trach anymore. I would also like for her to bottle feed so that we don't have to use the g-button for her feedings. Basically, the less things that she comes home with the better. And so the TCU chapter of our life begins!
