Recap

I am sorry that I have not been able to update lately. We have gotten a crazy amount of information. Between doctors, nurses, transplant coordinators, and Ruthie we have been very busy. So let's recap:

Wednesday: Its a bitter sweet symphony this life!

Let's start with the sweet:
- I got to hold Ruthie Rue:) IT was only for 20 minutes or so but I was able to hold her!! It had been a week since I had her in my arms and although she was a little cranky, it was well worth it.

- We joined the UNOS heart transplant list around 2pm!
Ruth Elizabeth Yarbrough: Type 0-; Status- 1A:) WOO HOO!The path we wanted to take had finally become available to us! OH SO SWEET!

Now, the bitter:
- Ruthie began to struggle with her breathing. As silly as it may sound, she was unable to breath and eat at the same time. She was not circulating the blood well enough to digest her NG feeds and eat.
After 2 syringes full of air and 1 full of formula, her stomach shrunk a bit. However, her "cutting" (basically Ruthie having to suck in deep for every breath) did not subside. We, of course stopped her feeds and started to think about other opitions. The solution= intubation!:( The amazing CICU team felt that she needed the support in order to continue on with normal body function.
Theory- If we assist her breathing (not making her work as hard), then her body can focus on its' other functions and her heart can rest and in turn be more preserved.

As I said at the beginning, "Its a bitter sweet symphony this life". It was so bitter to see my little girl intubated. It felt like a huge defeat. Yet we know it is better for her to rest, although so hard on us. However, it was so sweet to know we could be put on the transplant list:) AWESOME! AND I got to hold my little pumpkin! AMAZING!
We knew we were in for a rollercoaster of emtions. I did not realize that we couuld experience so many emotions in one day. It is truely an unremarkable journey we are on.


Thursday: I got a feeling that tonight's gonna be a good night!


Ruthie had a good night on Wednesday and a quiet day on Thursday. She was a bit swollen from the re-intubation and fluid push, but otherwise pretty good. There were no major hiccups on Thursday.
By noon, they did increase her sedation medications (by adding something similar to Xanex). They just wanted to keep this little fiesty one calm so she wouldn't fight the vent or worse, extubate herself. She has tried to do both in the past.

All and all though, a good day!

Friday: Hit me with your best shot; fire away!

Ruthie had a rough morning on Friday. At 4am they gave her a sopository (number 2)to help her bowels. By 4:30 am, she was in full fiesty and aggravated mode. She was setting off alarms and holding her breath and cause a huge fuss. She would settle for a bit, then open her eyes, look around for someone, and then cry if she didn't see anyone around. Spoiled?? Ah, maybe just a little. But hey I would spoil any child that has gone through all of this, especially my little Ruester. Around 6:30 am, she receiveda bolus (which is a quick push of a certain med) of her pain and sedation med. By 6:45am, she was out! Exactly what we were looking for!!
At 7:30 am, Ruthie was about ready to make her trip to the OR for a Brovaic IV placement. By 8:15am, Dr. Huddleson was explaining how she did during the procedure. "Textbook procedure!" WONDERFUL! No problems! The brovaic IV is a long term IV. Dr. Huddleson wanted that placed in order to start TPN and lipids. We need to bypass her belly (with feeds) until she has a BM. Also, heart transplant patients usually get a brovaic iv before transplant anyways, so it was inevitable.
About an hour later she was settled and back in her CICU home. The nurses informed me that she liked her sedation meds and that our plan was to let her enjoy those meds to the fullest. Right on!
I like to think that Ruthie was singing to herself, Hit me with your best shot, fire away! GO ahead, give me those meds and I will sleep!:)

The Weekend: Everybody's working for the weekend!

Okay, maybe not EVERYBODY is working for the weekend, but Josh definitely working for the weekend. It is hard to have him at work. Hard on me, hard on him, hard on Rue. But, we need him there. We need to keep insurance and we need to have some money, so work it shall be. I was excited for Saturday. It meant Josh was off and we could have family time! Josh makes it a point to be here for rounds both in the morning and at night. He is so wonderful, so involved! The weekends are great. They help take the stress of "hurry up rounds so I can leave for work off" of his mind. The "rush" factor is completely diminished. It is so nice.

Back to Ruthie.....
Over the weekend, the CICU staff tries not to overdo or push their patients. They usually try to keep everything quiet and keep everyone as comfy as they can. So, this was the plan: just let Ruth rest and we will try things out again on Monday.
I love when things go to plan:) Ruthie had a quiet Saturday day and night and a quiet Sunday day. She just slept and only caused a little fuss here and there. Every once in a while she would try to fight the vetn, but she calmed down pretty easily. There may have been a bolus or two, but nothing outrageous.

There is always a calm before the storm. The storm named Ruth hit hard and in full force Sunday night. Overnight, Ruthie had become extremely aggravated and was not calming down on her own. The nurse, Nikki, told us that Ruth would even hold her breath when they attempted to bag her. WHAT A STINKER! She sure gave them a run for their money that night. Nikki also said that a "normal" baby would eventually tire out for all of the yelling (over the vent) and pass out. Oh, but not Ruthie!. Nikki forgot one thing, Ruth is not "normal". She referred to Ruthie as a fiesty little one. Hmmmm... I have heard that before. I have been told since day one (when they had to restrain Ruth's hands because she was trying to extubate herself) that she was fiesty.
After 2-4 boluses over night, Ruth had finally settled down. Unfortunately Nikki was not able to enjoy the silence since her shift was over. Ruthie slept well yesterday from 6-9. I think she is learning early that she can fight but in the end, they will win. Maybe the song "I fight authority, authority always wins" needs to be played for Rue! Once she comes to terms with that, I think we will be set!:) LOL

Monday: I keep looking, looking for something more.

Yesterday was generally a calm day. Once again, Ruth had her angry spouts, but nothing a bolus couldn't handle. They believe that she is becoming tolerant of her meds so they increased her constant drips a little. They just want her to rest and preserve the heart she has.

I have spoken to many doctors, nurses, coordinators and we are all on the same page. We just have to wait. Dr. Huddleson said it the best, "This is the most frustrating part". All of our hands are tied. Until we have a heart, we are not good, we are not bad, we just are. We are waiting. We are praying. We are hoping that Ruthie's body and heart can handle the wait. As of now, she seems to be staying at a constant. The only major thing we have going on is keeping her happy. Oh and waiting on her to have a BM, so we can stop TPN and lipids and start feeds again. As long as she is sedated, she is perfectly content. So here we are.... It is so hard to watch my little girl sleep all the time, but at the same time I don't want to see her in pain. Such is life. I just keep looking, looking for something more. I know I should be happy and content with where she is at. She is not doing poorly, but she is not my little Ruester either. I want her smile, I want her laugh. I want my little girl back. However, I know that until post-transplant that it won't happen that way. Thank God for Ruth's high spirits and for her amazing soul. Anytime she is awake and content you can see her personality BEEMING out of her. I can't wait for her to be her again.

So we wait....

Thank you to our nurses, our doctors, our tranplant team and everyone working with us. Thank you to our families and friends for support. It is so wonderful to have you all behind us and to feel your positive energies and your love. I tell Ruthie everyday how special and loved she truely is. It really amazes us to see how many people are involved in her life. She is such a miracle. She is truely inspiring. Knowing that so many people care about her is so great it is beyond words. She is so blessed.

Please keep the prayers flowing. We have no clue when this miracle heart will arrive, but until then we will fight and pray. Pray for our doctors, for our nurses, for Ruth, for all other CHD babies and families and pray for those families that lose their children. Pray that God will guide those families to donating. Bless those families that will lose their child, so mine can live.

We are always hopeful and always grateful!

Thank you to everyone!

HEART HUGS!

Laura