It's been a month!

A month ago today, Ruth was admitted to Childrens Hospital. Over the course of a month, she has undergone a heart cath, a lung biopsy, a liver biopsy, a MRI, numerous echos, chest xrays, ultrasounds, blood work and so much more. Throughout it all, she has been such a fighter! She always seems to stay fiesty despite her many meds and full out sedations. She is truely amazing to me. She is the reason I have hope and she is why we keep fighting. Ruth is such an inspiration to me.

As I mentioned before Ruth had been having fevers on and off for a few days and the team was trying to put their finger on it. Well they pinpointed the problem and now she is on antibiotics for a UTI and she has been fever free for 4-5 days! Ever since the fever broke, Ruth has been sleeping better and tolerating her feeds. She is now at 25 mils per hour which gives us her max. Perfect! And since she is tolerating feeds and having bowel movements regularly again, they were able to get rid of some lines. She no longer has an art line, a PICC line, the EJ in her neck or the foley cath! We have worked our way down to the broviac and her vent! It is so nice to know that we don't need those things anymore. Not needing those lines means she is getting better. We finally think she has recovered from all of her poking and proding! Amazing!

To make this day even better, Ruthie is starting to be awake more often and is even smiling at us:) it has been way too long since we have seem those heart melting smiles. Oh how wonderful.

Although things are looking up, we are constantly reminded that thus stage is temporary and that without a new heart, things will eventually get worse. So we are praying. Praying so hard for Ruth. Praying for her doctors, nurses, the transplant team, the transport team. Praying for all the families that are struggling. Praying for the family that will help save our Ruthie life through donation. Praying that they can find peace and comfort in Gods plan. Praying for courage. Praying for strength! Praying for guidance and for the ability to let God take control!

Please continue to pray for Ruth! We are so blessed to have her and all of you in our lives. Your support and prayers mean so
much to us as we wait this out. Thank you so much! It is through friends that God shows his love and compassion! Thank you!

Hugs!
Laura

It's not what life hands you but how you handle life that matters.

We are all still here and all still waiting. It has been hard to update anything because honestly I don't know what to say. We are still in the CICU. Ruths overall health varies each day. Some days she is looking up, some days down... but a constant "okay". Things are going "okay". No heart news yet and I am sure I will not have any heart news until it is here. So we are just praying and waiting sometimes waiting and praying. ( to switch it up a bit ya know?!?)

Ruthie has had a first this week despite our location. Yesterday she had her very first Coke. Silly, right? Well her NJ (which us a feeding tube that bypasses her stomach and goes straight for the intestines) was a little difficult to flush after all of her daily oral meds so Tricia, the nurse, got a small syringe full of coke and ta da! It is so funny that she got a soda to flush the line but hey whatever works. I knew I didn't want to have to go through another NJ placement, so good idea Tricia.
So she had her very first soda:) she didn't seem to mind at all!

Currently Ruthie has a fever of 100-102. They ran cultures on everything 3 days ago and nothing came back. Yesterday they took her off the antibiotics to see if her fever would subside. Unfortunately it returned so they are running cultures again and restarting antibiotics until we know what is causing the fever. So once again, we must wait.

Please keep praying for Ruthie and her special yet sick heart. Pray that she can rest up and be ready for this transplant. Pray that her heart stays well enough to get us there. Pray for her doctors, nurses, techs, etc.
Please please pray for the families who have children struggling. Pray that they find peace. Pray that those that must lose their little ones will donate their organs. Pray that God can lead the right family to donation for us. Pray for our strength and our courage. Pray.
As you pray, remember all the heart angels that have gone before us. pray for their families. Pray for all the families and children currently facing a challenging time. Pray for all our heart babies.

Thank you for being with us during this tough waiting time. You don't know how much we appreciate your inspiring words of hope and prayer. Of course this is not easy, but having such a support system makes it bearable. I don't know what we would do without our friends, family and heart families. You are true miracles in our lives.

Happy Mardi Gras!!!

Much much love and appreciation!!

Laura

Oh happy day!

The past few days have been going fine here for Ruthie. Occasionally she needs a bolus to help her stay calm, but overall no really big changes..... Until today!

Besides waiting for a heart, we have been waiting for Ruth to have a bowel movement. It has been 9 days since her last one. The doctors were a little concerned but they felt she just needed rest and time. After 7 sopositories (that I recall) over the past week, it finally happen:) Last night around midnight we had success! Whew! What a relief! However, Ruth was not done! At 4 am round two appeared for nurse Cassie to endure. Awesome! I never thought I would be so excited about poo. I mean seriously, when a nurse says "Ruth had two big poopies for me last night" and my reaction is cheering and telling Rue I am so proud, you know it's a big deal!

So what does this BM mean? Oh so much! It means that het bowels are working:) Good news! It means Ruth does not have GI issues. It means her heart can support her stomach! And it means we can start feeds SLOWLY again! 2 mils an hour to be exact ( totally 1.5 oz for the day!) Starting feeds again means we can slowly work on weening the vent. Maybe maybe iif everything keeps getting better, we can extubate. But that goal is still a long way away. However we are going in the right direction! Yay! Dr.Oren, CICU attending said that TON is good, but the gut is much better. So slow feeds here we come:)

Ruthie also has been working that fluid off her little body. She's been peeing non stop, which is excellent because now her swelling has almost disappeared completely. Besides have the tube in, she looks like my little Rue again! Absolutely wonderful!

Oh happy day! I told Josh this morning, if I am this happy with a BM I can't imagine my excitement when she gets her heart! I will be beside myself! I can't wait!

Thank you God for being so good to Ruth! Prayers are truely answered! It's the small victories that make this journey easier to bear. Taking joy in the small things keeps us going! This BM may be a minor thing, but it means so much! Thank you to everyone! Thank you for thinking about Ruth, for praying for Ruth and for being such a huge support system. Rejoice today! We have climbed another mountain successfully!

Oh happy day! Oh happy day in deed!

In other news, Derrick is doing great. He is getting close to coming off that icky fat free diet.
Lorenzo is getting closer to going home. They hope to pull the chest tube today. Fingers crossed.
Cameron is waiting on another heart cath. He is getting do big!
And Jacob who is waiting to make his big appearance!
Pray for them and their families! They each have their own highs and lows, but they all are amazing.

Heart hugs!
Laura

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

More to come later!!

We have had an eventful day , which I will discuss later. For right now I just wanted to share our excitement with our heart community. RUTH IS ON THE TRANSPLANT LIST!!!!!!!!!

More info later! Thanks for the prayers and support!!!!

Mornings seem to be the roughest

Yesterday, we came in ready for Ruth's liver biopsy. The plan was 9am start time, so we arrived at 6:15 in order to be here for CICU morning rounds and to spend time with Ruthie Rue before she was sedated. Well, unfortunately when you have plans, God laughs and says, "Oh, my child. I hold all the plans. I am in control". And that he is every bit of true. So yesterday morning, we spent from 6:30 am to 10:30 am trying to prepare for a liver biopsy that should have taken place at 9am. Since Ruthie has been here for 10 days, she has received many pokes and sticks for blood draws and IVs. Knowing that, it makes the morning we went through yesterday a little more understandable, but not easy. Two nurses, two transport team members, a doctor and 8-10 sticks later, we had another IV access. Whew! In order for the liver biopsy to take place we needed two IV accesses. One for her heart medicine (the PICC line) and one for all the blood products Ruthie needed (i.e. platelets, creo, and Fresh Frozen Plasma). Ruthie needs those products because her clotting factors and times are a bit low. The doctors wanted to make sure that clotting would not be a problem since they would not be able to physically see a bleed (being a non invasive or "open" biopsy). So by 11 am, the ultra sound (to locate exactly where they wanted to stick the needle) was finsihed and Ruthie was starting to get sleepy from the sedation medication. 30 minutes later we were back in the room with her and her biopsy was complete.
The rest of our day went well. Ruthie slept most the day. She was able to be put on contineous feeds (10 mil an hour) and did not need any pain medication.
At evening rounds in the CICU, Dr. Cantor (the heart transplant BIG WIG) stopped by to tell us that we will have an answer to all of this on Wednesday. YAY! We will know exactly what are next steps will be on WEDNESDAY! Oh so exciting, but oh so scary. But having an answer is what we want. Knowing what path we will be on, helps. Or at least I think it will help. So now we are just waiting on Wednesday.

Today, started with much more excitement than yesterday. Although we had a rotating door of people trying to get IV access, I would trade yesterday for today easily. Today as we entered Childrens, I received a phone call. The CICU doctor was calling to tell me that Ruthie was fine, but that her heart rate had climbed significantly and that they were in the process of setting up the defibrillator to shock her heart into a normal beat. I quikcly informed the doctor that we were at the front desk getting our CICU nametags and that we would be there ASAP.
When we enter the Ruth's room, her heart rate was at 225. WOW! I hava never seen her heart beating that fast. So many doctors were there talking and watching. It is a bit unsettling to walk into your child's room and see all this going on, especially when we expected to be moved to 7 West today.
After a quick echo to check for blood clots, we were escorted out of the room and Ruth was given sedation meds for the defibrillation. After what seemed like a LIFETIME, the doctor came into the Consult Room we were guided to and said it all went as planned. Walking back into Ruth's room, we saw a heart rate of 140 and O2 at 75. What great numbers.
Right now we are just letting Ruth rest. The doctors are keeping a close eye on this fiesty girl. Apparently she wasnt ready for 7 West. She made that perfectly clear this morning.

We hope that today is extremely quiet and that Ruth keeps eating. They should be starting her feeds again shortly. So now we are back to waiting.

PRAY for Cameron (who is having a heart cath soon), Lorenzo (who is having open heart surgery today), Derrick (who is trying a fat free diet at home post- glenn), Jacob (who is kicking his momma all the time and is preparing to make his entrance) and Maggie (who is post-fontan and looking at O2s at 90%). PRAY hard for all those heart families. Also please pray for Ruthie. Tomorrow is a BIG BIG day. I hope we hear what we want, but at the same time I know whatever we hear we will handle.

BIG BIG prayers!

Heart hugs!

Laura