A Courageous Heart

Well busy week for Sophia and family! We did lots of physical therapy on the mats and in our tumble chair. We worked more on our bottle. Family has also been working very hard on getting their check offs and training completed for Sophia's care.

Wednesday was a surprisingly busy day. Sophia had to go down for an ECHO and a VCUG on her kidneys. We haven't had a busy day of screens like that in a while. Sophie did awesome on her field trip to the labs. She held mommy's hand on the way down and back and just looked around. I had to wait around until Friday night to hear the results of the labs. I must say I have really great news. The ECHO results came back and ONE of Sophia's holes in her heart has CLOSED!!! Closed...YAY! I was so happy I cried and then Sophia and I did a baby happy dance. AAAHH wonderful news. Her heart is on the mend. Her PFO closed on its own, but we still have the PDA and slight elevated pressures. Overall, they said they were pleased with the ECHO and that Sophia is on the right track. I just love hearing good news. Its a wonderful change in pace. She is such a fighter and everyday she amazes me by overcoming the odds. The VCUG results can not be official read to me until the renal doctor writes his orders. They did say it did some some slight reflux into her kidneys. I am assuming since it has taken three days for them to write for anything that perhaps it isn't that bad?!?! We hope so right. They have also adjusted Sophia's vent settings again. They lowered her rate by two again. I think they are going slower on her adjustments now because we are looking to start vent training. So far, she is tolerating the home vent and lower settings like a champ! Sophie bug is one amazing little lady. So proud to be her momma!

 The next two weeks are going to be really really busy for Sophia and family. Hopefully this weekend all of the trach check offs will be complete. Monday we are scheduled to have our 8 hr vent class and the rest of the week is scheduled for individual 8 hr vent check off days. We are making progress and moving forward! After all of the vent check offs our complete then it is on to individual shift training. Each person has to complete an 8hr and 24hr day with Sophia. During that time, the nurses do not help with anything. So it is practice just as if we were home. Im so ready, are you:) Oh and this is exciting news also, our double-wide red wagon is here!! Which is a sign home is on the horizon. Remember the red wagon is what I have to pack all of Sophia's travel gear in. They have also asked that we bring her car seat up for a car seat study. That car seat has been in our car and ready for Sophia since we originally drove to the hospital December 27 at 5:30 am. 95 days later and they are finally ready for it. 95 days later... I can just cry now thinking about that dearly desired drive home from the hospital. Can you imagine it. Deep breaths....I just can't wait to take that journey home with my husband and sweet little girl. It is going to be a dream come true.

A Mommy's Love

Everyday my heart grows more and more for a little girl. That little girl is my sweet daughter, Sophia Kay. That little girl holds the ability to break my heart and make it completely whole again. Every tear or every time I see her hurt breaks off a little part of who I was and then when she smiles a new part grows back stronger and that part becomes MOM. It a love like no other. I love that John and I created Sophia out of love and from Sophia we have grown in love and know have that special bond no one can take from us. The love of a child. Our child is special. Our child is loved, loved more than she will ever know. Actually, I take that back, she will know everyday just how MUCH SHE IS LOVED. Sunday evening, John and I were playing with Sophia and singing her songs. I started grabbing her hand and touching her nose then mommy's nose, saying "Sophie's nose, Mommy's nose" as I touched each one. I did that a couple of times and when I let go of her hand I said, "Sophie where is Mommy's nose" and then she clumsily reached up and touched my face. My heart melted and my eyes filled with tears. In that moment, I felt more like a mommy than ever before. I felt my child reach out to me and that was the best feeling in the world. 

Could It Be...

Since we spoke last there has been some exciting news buzzing around our hospital room. Before we get to that, it is time for a brief Sophie Kay update. Sunday/Monday last week she came down with a bit of a bug that affected her trach site. She was having some pretty "yuck" secretions from her trach site and just over all did not seem to be feeling well. Monday she was just completely uncomfortable and fussy all day. The next couple of days she slept it off. They started her on an antibiotic and steroid right away. I think they caught it before it got too bad. Today she was 100% herself.

Tuesday last week, I sat down in a larger conference room with a table of doctors and therapist. They sat me at the head of the table (surprisingly I was not nervous) and I got to go around and ask each one of them questions and her current updates on Sophia's progress. One thing that was brought to my attention was the term, lung disease. I had never heard that association with Sophia. They explained that her lungs are still relatively good but there are still unexplained things causing her need for support and at this point all they can do is to continue to support her and see how she improves with time. This was not the answer I was hoping for regarding her need for continued vent support. TIME seems to be the go-to answer.  My last question was... When are we going home? The doctor replied. "Good Question". The answer was we would like to schedule your vent classes and check offs for the first of April. So in the sly, I did not get a direct answer to that question either, but I did get a date for a class. This also means that after the vent class is complete and the vent check offs are done. We can start the countdown to home soon after. Basically, at this point we are preparing for her departure. In order to be sent home, Sophie has to be stable on the vent and in overall (relatively) good health and she can only be sent home with trained care givers. There is actually quite a few things the caregivers must do in order to "pass" as a trained caregiver. We have already taken our trach  classes and John and I have completed our list of 30+ trach check-offs. Once our trach check offs are complete we can then sign up for an 8 hr vent class which is followed by an 8 hr vent check off day. Each caregiver must attend the vent class and do an individual vent check-off day. John and I are having two other family members go through the caregiver training to be extra hands for Sophie and breaks for mommy and daddy. We have until April 1 to have all of the check-offs complete and then the first week in April is scheduled for the vent classes. After the vent classes are complete, then each caregiver has to complete an 8hr and a 24hr shift in which they care for Sophie alone without the assistance of a nurse. They nurses will only be there to watch over the caregivers and help in an emergency. After all of our training is complete, the medical supplies are ordered, the home nursing is lined up, and so on....dare I say, we could be heading HOME. The nurses said it takes at least 2-3 weeks to get everything completed after the vent classes and to get everything else in order before we cant go home. They will not send us home on a weekend or a Friday. AND of course, this is all dependent on Sophia staying stable on the home vent and she tells us shes ready to see her new room and be home with mommy and daddy. ALL and ALL this is wonderful wonderful news and the first ACTUAL timeline we have ever been given in our three months at Riley. Yet again, the hurry up and wait theme creeps back into play. We have to hurry up and get our training check offs and classes done and then wait for supplies and the behind the scenes things to come together and to see if Sophia says she is ready. I think she is ready... I certainly know mommy and daddy are beyond ready!!! So please everyone, fingers crossed, prayers lifting, and good vibes afloat that we stay on the fast track to home. Even though in reality this is still potentially a month away. If that is the last month, BRING IT ON. We are ready to go home.

HOME, I am so ready to be home. There are just somethings that can completely break my heart. Having to always say good night and good bye to Sophia. Knowing how hard my husband is working for our family and knowing how much his heart breaks he can't be with his girls everyday. That moment when you turn around to find Sophia crying without making a sound. I would give anything to hear her cry. There also some things that completely warm my heart. Seeing on my husbands face how much he loves Sophia. Knowing how simply blissful our life will be when we can tuck our baby into bed and not have to drive 40 mins away from her. Knowing when my husband goes to work, he will have his wife and baby girl waiting to give him kisses when he walks back in the door. Knowing that we can finally be our family of three. Knowing we can finally make that drive home from the hospital. Knowing that once we are home we can start making sense of our lives and start having a normal family routine (however abnormal that may be to others).

This LOVE is all I need!

GETTING HOME WILL MAKE EVERYTHING BETTER!

Look how far we have come....

Getting ready to meet Sophia

First Picture of Sophia in the NICU at Riley

First time seeing/holding my baby girl at 9:30 that night.

She was born at 8:54 am.

First Family Photo: I will cherish this moment always

Daddy holding his baby girl for the first time

One Day Old

First Photo with her eyes open

HAPPY NEW YEAR!! Celebrating her first holiday:)

One of my favorite photos! (a few days old)

On blow-by oxygen before her atersia surgery

One week old and having her first major surgery. 

In the waiting room with good friends and family.

One day after her surgery to have stents placed in her noses.

Her poor baby nose:(

Trying her bottle for the first time!

Back in the oxygen hood

 Typical day snuggling with Daddy in the NiCU

Ahh!!! I am so glad to see those stents GO...

3 weeks old and her first SMILE!!! The sweetest gift I ever received! 

(It was three days later that her palsy developed...worse feeling ever)

Sophia was so over the stents too! She kept pulling them out so they had to take them in place.

With Sophie before her second nose surgery!

One day after her second surgery. The second set of stents were only in for one day. 

Poor baby girl, you can tell how sick she was in this picture. She was one month old here. 

The start of her purple phase. Still in recovery

5 days after surgery. Had to be put on the vent because we discovered her airway was collapsing on her. 

Waiting with Sophia before her trach surgery, one week after she was vented. 

 With our grandmas waiting on Sophie to come out of surgery for her trach and gtube. This was by far the longest day ever. I still get anxiousness just thinking about that day.

One day after her trach surgery. Sweet girl. It was so hard to see my perfect baby to come back with man-made holes in her body but at the same time it was so wonderful to be able to finally see her beautiful face tape and stent free. 

Little bug spiked a fever of 103.3 during recovery! AHHH. The hits keep coming but Sophie keeps fighting!

Finally on the mend..... almost 8 weeks old!

Sleeping peaceful

8 weeks and that beautiful smile came back to me!! 

I was smiling bigger than she was:)

FAMILY PICTURE!!!

Our little Angel

2 Months Old! Looking so much better:)

Sophie Loves her Bouncer

Sophie loves Lovie Bear

Sophie loves her Paci

Sophie loves her Rings

Sophie Loves Daddy

Sophie loves Mommy

And Sophie loves funny things:)

11 weeks Old

Sophia being her adorable self. 

Just shy of 12 weeks Old

Looking back on these photos you can really see how far Sophia has come along. She has been through 5 surgeries, countless exams and labs and xrays and scans and hundreds of other changes. I didn't realize how sick she really was until I looked back at some of these pictures. My heart just breaks and melts for this little angel. She makes improvements daily and I find comfort in knowing how strong she is. Her road is still going to be a long and bumpy one but she has mommy and daddy to help her along the way. Really we have her to help us. Looking at that grin in the last picture helps me find peace knowing we have been making the right decisions for her. I still yearn for the days of home and a time with no tubes and wires but I know no matter how difficult it does get there is proof in the picture and the proof is that its working. Sophie is growing and developing and getting stronger and stronger. Yet again, I say, I can not believe she is going to be three months soon. I love you worlds and worlds baby girl!