Sobriety

As of today, Ruthie will completely drug free. She will remain on her milrinone (heart med), her lasix (diuretic), her reglan (stomach acid med), her pepcid (a heart burn med), her asprin (as a blood thinner) and her potassium supplement. However, she will be completely, 100% on her own in terms of pain or sedation medications! WOO HOO!

I never thought a 8 month old would face sobriety. It sounds so silly to say, but at the same time, pretty unreal. She is finally sober for the first time in 3 months. WOW! Now we get to meet the "real" 8 month old Ruth. She will no longer be hiding behind one drug. What you see is what you get! I am pretty excited! I can't wait for her to be in her "right" mind.

Still waiting... Of course trusting God and praying. Another heart came in the other day for another SLCH child. Amen Lord. Amen. Please keep Cameron, Nolinn, Audrey, and Grace in your prayers. They are starting their "second" life. Give them strength and understanding. Thank you for giving them this hope.
Pray for Ruthie as she continues to wait. She is amazing to me. I am so blessed to have her as my child. I am so very VERY proud of her strength.
Pray for Ben. Derrick, another Cameron, Jacob, Lorenzo, Tucker, and all heart babies!

It's in Gods' hands!

hugs!

Laura

What's going on!

Ruthie is just doing what she does best, which is waiting. She is medically stable and at a standstill. She has a total of 4 teeth that have cut through the gums and there is a 5th on its' way. She has also found it necessary to sleep through the night. The over night nurses are a bit bored with her. But hey, that is something that we can all handle.
So nothing really new or different. I am still working with the low carb diet. It is a bit harder as I progress in the plan. I am so ready for baked potatoes and spaghetti, but in time. I am down 9 pounds and I would love to lose 5 more before the wedding day, but we shall see. I am pretty content now, but I may get more motivated and actually start working out. Once again, it all depends on what life brings.
The wedding planning is coming right along. I am working on getting my addresses together so we can send out invites this week. Ugh, I am really slacking when it comes to the invites. I think sending them out makes the wedding a real deal. I am excited for the wedding, but at the same we are still so unsure where we will be come June 26th. Its such a catch 22! However, we will venture on and know that God will provide and His will is what will be done.

Oh and to add to my stress, I have decided to take a Intro to Biology class this summer via the web. I will have labs each Thursday for 4 hours, but otherwise the rest of the work is internet based. I am super exited! I am on my way to the pre-nursing program. BIG LIFE CHANGE! I am so so happy! I can't wait to get started!


Oh, while my sister watched Ruthie today (since I was working 11-3) she took a picture and sent it to me. It was the best picture text EVER! I am so grateful that we have a wonderful family that is there to support us. THANK YOU THANK YOU THANK YOU! You are all so amazing! I love you!


So voila!





Big Big prayers for all the heart babies and for their families. Even bigger prayers for the doctors and nurses that care for these families and children. They are such compassionate, wonderful people. Thank you God for giving us the best of the best to work with Ruthie! We are so blessed!
AMEN!

Hugs!
Laura

Maintenance and Recovery

Ruthie is undergoing some more maintenance today.
As I said last week, Ruthie's broviac cracked and was the cause of infection.
Today around 1pm or so, Ruth should be on her way to the OR for a quick broviac procedure. Last time I believe it took maybe a half hour before she was back. They are hoping not to fully intubate since it is so minor and so short. Let's pray that their plan works and she is able to stay away from that vent!

Over the weekend, Ruthie has been rather quiet. She seems as though she made a full recovery from her heart cath on Friday. I would even venture to say that she looks more comfy and better than before the cath.
She is currently on a high humidity nasal cannula on 4L of 02 at 35%. Her heart rate has been MUCH more stable. Her o2 saturations are consistently in the upper 70s and her blood pressure has decreased. I truly believe that this stint in her shunt was what we needed. The doctors are at a standstill with her thus far. They were thinking Friday that she would either need another heart med or a blood pressure med. Now, though, they are going to sit down and review things and see if "doing nothing" is the answer. So we will wait.

I just want to say THANK YOU to everyone who has been praying for Ruthie. We have not received our big prize yet, but we are stable. Ruthie seems happy and we feel "okay" right now. God is answering our prayers. In his time, all things will be righted.

So, thank you Lord for giving us Ruth and giving her strength. She is a beaming light of happiness and joy. She knows no different. Thank you for our friends and family who time and time again step up to the plate for Ruthie. She is so lucky that you have placed these people in her life.
Continue to guide us Lord and help us to follow your plan. We know that you will protect us from harm or give us unfailing strength to bear whatever we might cross. We believe and trust in you.

HUGS!

Two Days, Two Trips

Warning... This is a bit long. A lot going on!

Whew, what a weird 72 hours. I can't believe all that has happened. Not only to Ruthie Rue but to the SLCH CICU.
Thursday started with a bit a of bump. Ruthie still had a little infection from her broviac iv and her stomach had become descended over night. They stopped feeds around 5 am and began thinking what to do next. In rounds, the gross of doctors and nurses decided three things needed to be done.
1. We needed a stool culture to rule out a gut infection.(Ruthie had been vomiting, having diarrhea, and had been descended. Then the vomiting and diarrhea stopped suddenly).
2. We needed to remove her broviac because it caused the infection that started on Monday and now had a crack in it. (They had started a peripheral iv over night.)
3. We needed to go to radiology to meet with a GI doctor to check for mal-rotation of her intestines. Mal- rotation is a congenial intestines defect that would allow her stomach to flip on itself. This in turn would require another surgery (Her xray showed that her NJ was weirdly placed and that her intestines were pushed over a bit.)

Dr. Ghandi removed her broviac around 8:30 am. Ruthie was not too pleases with this decision, but she seemed to settle down a bit. We finally got her to sleep and then radiology called saying "If its' gonna be today, its gonna be now." So ROAD TRIP! Well hallway trip. Ruthie's eyes popped wide open once we hit the elevator for our ride to radiology. She was so happy to see different things.
On the way to radiology, Ruthie decided she needed to kindly provide her stool sample. FUN FUN! Luckily, Josh remembered a diaper. WAY TO GO! So after a quick diaper change, they injected dye into her stomach and intestines to see her blood flow. Both set of images looked good. No signs of mal- rotation!
So before 11:30 am, Ruthie had checked off everything off her list! However, Ruthie was still rather fussy. We had tried Tylenol and orajel. We tried holding her. We tried rocking her. He tried leaving her alone.
Josh, once again, jumped in and made a save. Ruthie's right leg was rather swollen. Her name badge was almost popping off. We called in a nurse and within minutes her busted IV was taken out. We propped Ruthie's foot and waited for the IV team to arrive to place a new IV in her arm. Ruthie took it like a champ and rested comfy for part of the afternoon.
Rounds that night lead to feeds being started again, every 6 hours increasing by 5 mils and an idea of rest.

Friday started rather quiet. When I got there Ruthie was sleeping. She had a pretty quiet night, but she desated around 5 am. She was placed on oxygen through nasal cannula. During rounds, they discussed how they need to figure out why her levels were lower and why she needed O2. After a bit of discussion, it was decided that they needed to run a few labs, start monitoring her head and lower body blood flow, get a chest xray and then discuss adding diuretics or another heart medicine . They also were thinking about an echo. The xray looked like we needed to start diuretics to move some of the fluid around the lungs away. They hoped this in turn would bring up her stats. It sounded good to me.
About an hour later, things changed a bit. Dr. Sharkey (Cardiology attending) wanted to schedule a heart cath for next week. She wanted to know actual numbers and to see the Sano shunt. An echo would not give them "real" answers. I agreed and she planned on diuretics until then. Dr. Oren (CICU attending) came in a little later saying he wanted a central line put in instead of a PICC. As he looked for placement, Dr. Sharkey returned and they decided since he wanted a central line and a new NJ and she wanted a cath, that they would do EVERYTHING that day.
Within a few hours, I was signing consistent forms and we were talking to the anesthesiologist about her intubation and sedation plans. At 11 am, Ruthie was in their hands and we were off to lunch.
By 2pm, Ruthie was wheeled back into her CICU room still paralyzed and intubated. Dr. Balzer added two stints to her Sano shunt during the cath and her NJ and central line were placed. The pressures in her RA were higher than her last cath. This basically means we made the right call back in January to change our path towards heart transplant. Her pressures are much too high for the Glenn and it wouldn't have been a good recovery.

So, around 4pm, Ruthie was extubated. She was very relieved when the tube came out. She had the cutest look of, Whew! on her face.

She is currently doing well. She is on O2 still, but we are working on weening it off. She is starting feeds increasing 5 mils a hour until her goal of 30 mils an hour. She is also well rested after 10 hours of sleep last night.

Now we wait.
And while we wait, we thank God for the 3 miracles that happened in 48 hours in our unit.

Thursday afternoon, a baby girl received a heart from Barnes. This happened a day before she was to be placed on the Berlin heart. AMAZING. She is now pretty and pink and so active. It makes me have so much hope. I am so happy for her parents. I am so pleased that God has granted them a second chance.

Friday night, another little girl received her heart. Once again Dr. Ghandi, did the transplant. She is currently recovering next door to us.

Friday morning, as the little girl was wheeled into the unit, a little boy (Nolin) was wheeled to the OR for his new heart. Nolin had been waiting a month longer than us. We were thrilled to watch him go to the OR. I was crying. We have been saying since day one that Nolin deserves his heart before Ruth. And once he gets his, we can focus on getting ours. It is only fair that Nolin get his first. WELL, AMEN!
Dr. Ghandi amazes me. Three heart transplants in 48 hours. WOW! GOD IS GOOD!

We are so thankful for God. We know that miracles are his handy work. He does marvelous things.
Thank you God for being our rock and for showing us signs of peace, hope and joy.

Please keep all of those babies in your prayers. Pray for all the heart babies. Pray for Ruthie. Pray for the families. Pray for donations.

Thank you!

Suprise!! We are going to the cath lab!

I will do a major recap of the past two days later today. As of right now, Ruthie is in the cath lab for three purposes.
1. A diognostic cath
2. A central line
3. NJ replacement.
They are checking the ins and outs of her heart and her Sano shunt. We need to know exactly what is going on and a cath is the best way to accomplish that task.

Great news! Two babies received their heart over the past 24 hours in our unit!!! Amen! Amen! God is good! Please keep them and Ruthie in your prayers.

It's in Gods hands.

Amen!

Put on Hold....

Ruthie has had a lot going on lately.
Yesterday, we celebrated her 8 month birthday! WOO HOO big girl! She spent the day playing and sleeping. Pretty much a normal day, except she had a pretty pink dress on. She was totally a ham for the day, as if she knew it was a birthday or something. So funny.
To go along with getting older, Ruthie has had a first! HER FIRST TOOTH!! Over the past couple days Ruth was sort of crabby. We all assumed it was from taking her off the adavan (the sedation medication) and the morphine. NOPE! I mean I am sure it had something to do with the situation, but her teething makes much more sense. So she is cutting her first tooth on her lower gums. Once we figured out she was teething (or is teething), we made a quick fix: Tylenol!!! Since then, she has been quite content. She is fascinated with putting anything in her mouth right now. It is funny to watch. But if you aren't careful, she will hold your hand and it will end up in her mouth. She is sneaky.
Besides cutting teeth and turning the big 8 months, Ruthie has a few medical issues arising. A few days ago, we noticed that her broviac was occluding. (Basically one port of her double broviac was clogged). So we tried to flush the line and it didn't clear, so we decided to just use the other port for the time being.
Well, one of Ruth's many nurses discovered that the port wasn't nearly as clogged as we thought. She did some fancy new taping and like magic both ports began working.
Out of the woods.... NOPE!
Last night, Ruthie spiked a fever. Of course anytime she has a fever, they run cultures on pretty much everything and start her on antibiotics to make sure there is not an infection. Her broviac line culture did come back positive with infection. So we are adding a broad spectrum antibiotic and running a culture on her broviac for the next 5-7 days. We have two ways we can go with this infection.
1. The infection clears on its own (with the help of antibiotics) and then we are done.
2. The antibiotics do not help the infection and then we pull out the broviac line and start a peripheral line for a few days. We wait until the infection is gone and then insert a new broviac line.

I am praying hard that we can cure this infection with the antibiotics that we are on and just let her be. If not, that means in the near future we have a trip to the OR to remove her broviac line. Then the fun begins of trying to get her a peripheral line. Ruthie's veins are so hard to stick sometimes and it may take a few tries before we hit success. THEN, after the infection clears up, we go back to the OR for a new broviac, which includes sedation and possible intubation. I cringe writing those words: sedation and intubation!?! UGH. I don't want Ruthie to go through those things again unless its to get a new heart. It is so hard for her to come back, swollen and sleepy. And then we have to extubate again, which is always a bit scary.
So, please please pray for a quick cure of the infection. It would be so much nicer.
Not to mention, while she has an active infection she can not take any heart offers. We are still listed, but if her name is first on a list for a heart, she cannot accept it until the infection is clear. It would not be fair to Ruth or another child. If Ruthie has an infection, she should not be in the OR for an open heart surgery. Also, after she receives her heart, she will be on anti-rejection meds and it will lower her immune system. Once again, her infection would not get better which could cause other major problems. That would not be right for Ruthie or for another child who could have taken the heart and been fine.

So we are just waiting. Ruthie is doing really well. She is starting to show her attitude, which THANK GOD the nurses find cute and funny. If they didn't, I don't know how happy anyone would be right now. She likes to play peek-a- boo with the nurses. She will cover her face when they are in the room and she is trying to sleep. Once they leave, though, she is back to watching tv and her cover is around her waist. LOL! I think it is silly and funny. Ruthie also likes to slip down out of her boppy while she sleeps. Some nurses try to fight that battle with her by picking her up and moving her. Other nurses think that too is funny and snap pictures for us while we are gone. They are a group of wonderful people at SLCH! They care so much and they make us feel very good about Ruth's care.




One last note.
Ruthie won a medal from the St. Louis Go! Marathon. My sister, Nicole, is an avid running and trains for half marathons quite a bit. Well, during her training for this run, she use Ruthie as her inspiration. She ran for her! It takes much strength and dedication to run 13. something miles. During her low points in the run, she kept thinking about how strong Ruthie has been. She thought about all the parents that deal with CHDs. She thought about the idea of organ donation. She thought about the parents that have to send their little ones to heaven. She really poured her heart and soul into this run and at the end she received a metal.
She gave this medal to Ruthie and it now hangs on her bed as a reminder of strength. Nicole said it was Ruthie's turn to remain strong and see this through.





Thank you so much Aunt Coley! I love my medal!


Please kept a constant vigil of prayer for out heart babies and their families. Nicole was absolutely right. Each one of us is blessed by God with strength to handle what life throws to us. Stay strong!

Thank you for praying not only for Ruthie, but for all of those precious heart babies.

Heart hugs!

Girlie, you need to gain some weight.

Little Ruthie is doing quite well, our main issue right now is that she is just that, "little Ruthie". The doctors worked on a growth chart yesterday and honestly over the past month it has flat-lined. This is not necessarily good, but also not the worse thing we have encountered. I am assuming she didn't get my genes when it comes to gaining weight otherwise she would be nicely plump now. I mean how does that work?? I am on a LOW CARB Atkins diet and they are increasing Ruthie's food to 27 calories per oz to help her bulk up!?! Can I say that I am jealous?? Is she going to be one of those girls that can eat and eat and eat and not gain weight!?! Oh, I am definitely a little jealous.
Jealous and nervous. I know that heart babies do struggle with weight gain. So I guess I am not near as jealous as I could be then.But I also know that in time she will gain the weight. I can't imagine how quickly she will pack on the pounds after she receives a new fully functioning heart. Then my genes will kick in!! (I hope!)
So right now, she is on room air (YAY!) and trying to gain weight. Sounds like a pretty "easy" road to me. (well "easy" being that we are purely just working on weight and that she is doing good despite it).
So, we will wait. Nothing new or different with our game plan. Pray and wait. Wait and pray. Oh and of course, wait pray play eat wait.

Well, now to the fun stuff: PICTURES!!!

Ruthie in her Easter best!






Ruthie cheering on the Cards on Opening Day!







Ruthie celebrating a GREAT Cardinal victory by playing in her gym!




Lord,
Please watch over our heart babies near and far. Guide their families to peace and understanding. Help those little ones stay strong and to show the world that they are born fighters. Protect Ben, Cameron, Lorenzo, Derrick, Grace, Jacob, Tucker and Adam. Keep their families safe and give their guidance. Help grant the prayers of all of the heart babies, especially those waiting on a second chance (with a new heart), like Nolin, Ruthie, and Riley. Help guide those parents to you and your grace. Please Lord, give peace and reassurance to those families who have dealt with tragedy or will experience tragedy. If it is your will, please guide those families to donation so that in turn other families can receive life.
Finally, thank you Lord. Thank you for being my rock. Thank you for giving Ruthie to us and to this world. We do not know what your plans are for her, but we do realize how far your love extends as we look as her. She is such a sign of love and compassion. Thank you for placing into our hands. She is a miracle and we are truly blessed to be her parents.
In Christs' Name.
Amen!


HEART HUGS!!
Laura

Ruthie: A Lady in Waiting

Ruthie is, as her Great-Grandpa Pollmann likes to say, "A lady in waiting".
As of today, she has been waiting for her new heart for 9 weeks.
WOW! It is unbelievable that we have been waiting 9 weeks. It sometimes feels like 9 months and then other times, like 9 days.
According to the heart transplant information from SLCH, the average waiting time is 6 to 16 weeks. Well, we have hit the "average" and we are sure ready whenever this miracle arrives.
Ruthie is doing wonderfully though. She is all smiles. She LOVES physical therapy! She loves playing. She loves trying to laugh. She loves watching TV (especially Veggie Tales). She is starting to move things from one hand to another. She also is becoming every bit of a spoiled baby. She knows how to get attention and since her voice is back now, she will demand that attention if she doesn't find things around her to entertain herself. It has become rather funny. She will fuss and cry and then someone will walk in the room and talk to her and WHAM! she is over it and all smiles. I know we will have to work on her "need for attention" once she is home with her new heart, but as for now, whatever makes her happy, makes us happy. I also think that the staff at SLCH, really doesn't mind coming to her rescue when she needs a friend. She makes them earn their money some days though.

This past week has been rather crazy. Not in terms of Ruthie, but with everything else going on. Easter weekend, moving from 7 West (CICU annex) back to the heart of the CICU, planning a June wedding that is fast approaching. Oh and of course, Josh and I have started a low carb- no carb diet to add on top of it all.
WHOA! I can't believe it's Friday already! It's crazy how quickly it all flies by!

Speaking of Easter...



She slept through all the pictures of her as an Easter Bunny........

I just couldn't resist.



And then a big view of her baskets and bunnies and her bed.....




I do have more pictures of her in her Easter outfit. It didn't last very long, but she did look cute. Josh, unfortunately has the camera with him so I will have to post them later.

Please keep praying for Ruthie. She is doing REALLY REALLY well despite the fact that her very sick heart is not going to mend itself. She is such a beaming light of joy and because of her, I am able to smile and know that whatever the outcome, we will be okay. She has given me so much love and inspiration. I love her so stinking much that it hurts sometimes.

Please pray for Ben, Lorenzo, Cameron, Riley, Derrick, Maggie, Jacob, Tucker, Grace and Adam. These very special heart babies and their momma's have been so strong and such a influence on our lives. Keep them close in your heart. Please also pray for the heart angels who have received their wings. Pray that they can guide their parents to peace and that they will watch over our heart babies on earth.

God has been there every step of the way. We know that He will continue to strengthen us and guide us. He will lead a shoulder to cry on and a hand to hold. His will be done.
AMEN!

I LOVE YOU SO MUCH RUTHIE!!
STAY STRONG and know that we will be here with you today and forever!

Love,
Laura

Blog outlook

I am currently working on changing the blog outlook. It will take me a bit to get it all together. So please bear with me while its a work in process... kind of like our lives. A work in progress!

Thanks!

Good Friday

Today is a day to remember the greatest act of love known to man. Today a man willing endured a brutal inhumane death. He was beaten and whipped. He was mocked and ridiculed. He was forced to carry his own cross. He had nails driven into His hands and feet. He did no harm to those around Him. He did not say a cruel word. He begged God to stop this torture. To let death pass Him by. But in the same breath, He told God, "Your will be done". He became completely and utterly human while the world watched Him suffer and die. He did this all with compassion. He forgave those who hung Him up on the cross to die. He forgave those who mocked Him. He forgave those who did not believe. He forgave those who betrayed Him. He forgave the world so that God would forgive us.

Who am I to question my fate? Who am I to plea with God that MY way be done and fulfilled. God gave His only Son to the world and watched the world kill Him. And I want MY way!?
It is on this Good Friday that I remember Jesus' suffering and tremendous pain. I visualize all that He endure and then look at my life. HOW BLESSED! We are so very fortunate. We have so much of God's love and presence around us. We have our heart families who travel on this road along side us, bearing their crossed and helping us bear ours. We have our families and friends praying and picking us up each time we stumble and cry out for mercy. We have our doctors and our nurses providing aide and acting as the women who cared for Jesus as He carried His cross.

Thank you Jesus! Thank you for taking on your cross so that I may take on mine.

Smile because you have another day to be thankful for!

HEART HUGS!!
Laura

Quick Ruthie update:

Ruthie is still playing her 7 West- CICU dance. We are technically in 7 West but still under the care of CICU. Some want us to move to 7 West. Some think we should stay. I am content either way. I think the possibility of move is enough to be excited about. I am so proud of Ruth! So as for now we are still labeled CICU, but we shall see. Otherwise she is keeping the status quo as they slowly ween down her morphine and adavan.

Expect pictures after Easter! I of course bought a few things for her to model this Easter Sunday.