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