One Foot In Front of The Other

Miss. Mallory is still taking those baby steps. She had a very good night last night. She held her own. She was holding rock steady today when she decided she needed to spike a fever. They once again put the cooling blanket on her and the temp slowly came down. They took cultures and started her on antibiotics just in case. The positive out of this whole fever episode is her blood pressure did not waver! Thats another step in the right direction. She is off the paralitic drug and the sedative. Now we just need to let those drugs work their way out of her system so she can wake up all the way and we can get the vent tube out. They did go down on the rate of the vent because she is breathing over it. She started to twitch today and even attempted to open her eyes a few times. She responds to our voices too!

We had a great visit today from Paula Brammier and Kris Goering. They flew in for the day. Funny isn't it that it's less expensive to fly to St. Louis than drive! Mallory also responded to their voices. It was GREAT to see some faces from home, and what cute faces they are. We went and had lunch at an outside cafe and had to explain to the waiter how to make a red beer. :) I haven't laughed and cried like that in awhile. Kris was also kind enough to "spiff" me up a little when she was here so I feel like myself again.

Our goal for this evening is to continue to keep the temp down, continue to turn down the rate on the vent, and pee all the sedative and paralitic drugs out! The Docs decided to do a profusion (sp?) test tomorrow. This will tell us how well her lungs are working. No worries. Since her heart was so big and her left lung was compressed they just want to see how well it's working.

I'm off for my stay at the hospital this evening. It's Scott's turn to sleep at the apartment. I'll update again tomorrow!!

A Room With A View

As of 10:00 am Saturday morning, all cardiac patients have been moved to the brand new Cardiac Intensive Care Unit, further known as the CICU. Mallory was, in fact the last one moved over, and tolerated the move. And as you all know, I got some great pictures of the move! I say they were saving the best for last. She is in room #9, the only room with a beautiful view of the Arch!

Saturday was uneventful, as we like it. They didn't make many changes. They had started feeding her Pediasure in a very small amount through her NG tube, 1ml per hour and have added Lipids and TPN. Those are nutrients and fats.

I sent Scott back to the apartment to sleep and stayed with Mallory. She had another good night. They took the cooling blanket off her bed since she has been maintaining her temp. and started backing off her Epi at around 4am.

She had a chest x-ray this morning to see if her PICC line ,and vent tube is still placed correctly. They decided they vent tube needs to come out about 1cm and have some concerns the PICC line is leaking because she is starting to retain some fluid on her left side. All of her lines and IV's are on her left side, so it may just be the matter that she has all fluids and meds going in on the same side and she is on high doses of everything and has been lying flat on her back. Again, we will have to wait and see.

So the plan for today is to start increasing her feeds, take her off the paralitic drug and get her to move around a bit, raise the hed of her bed, and possibly decrease the rate of the vent and let her start to breathe over it. Once the paralitic wears off she will naturally start to breathe over the vent. We have found she likes to have her pacemaker set at a higher rate, usually at 170, and the Docs don't seem to concerned about that right now. She is maintaining good blood pressures and is peeing VERY well. That just means her kidney's are getting the blood to them that they need to work, and that her Lasix is working. They are thinking the right side if her heart is starting to work a bit better. They won't do an ECHO until Monday, so we will know more then.

Since there are currently 8 kids in the CICU, 7 boys and Mallory, the night nursing staff has dubed her Snow White and the boys the Seven Dwarfs. When I told Scott that he started to laugh and said, "Well, she is sleeping like Snow White". :)

Our prayer for today, is that the baby steps she takes today will be forward in nature. Rev. Hal continues to visit with me, Scott and Mallory, and continues to pray with us for a safe journey for Mallory. No matter how long that journey is going to be, I know that God is holding Mallory in his hands giving her the strength she needs to take each baby step. We will forever be grateful to Rev. Hal for all the support he is giving us through this difficult journey. Thanks again for all the prayers, we will take all we can get!

No Spell Check

As most of you know I can not spell!! :) I am also going to use the excuse that it is usually late in the evening when I am posting a new update. That's why there are so many typos. Just to let everyone know, the ECHMO Machine I was talking about is really the ECMO Machine. No H. :) Wendy

A Better Night

I just got off the phone with Mallory's nurse, Jackie. Mallory had a good night. Her BP stayed where they wanted it for most of the night. It varied a bit when they went to far down on one, and up on another one of her drugs. They quickly made an adjustment and her BP came back to where it should be. They also did give her some blood products, which she tolerated. They did have to put an additional line in to give her blood. I was worried about Scott not liking that because she already has so many lines coming out of her. Jackie told me Scott was just fine with it. As Scott said, "she is still sedated and paralyzed, and on pain medication, she's not going to feel a thing'. The nurse got the new line in, in only one poke. Oh Happy Day! :)

Although she is finally pink in color, her hands and feet have been ice cold. This means the blood is not profusing the way it should through her body. Yesterday her legs were cold all the way from her knee down to her toes for most of the day. When I left last night she was making progress and was cold from her ankle to her toes. Jackie told me this morning that her feet are almost warm!! :) As you parents out there know, the one thing you can do for your kids is make shure they are warm. It's so frustrating when you have the warmest sock on your child and their feet are still ice cold. I know I said sock. She can only wear one sock right now because she has an IV in her left foot.

So all in all, Mallory and Daddy had a good night. I'm off to the hospital right now so Scott can come back to the apratment and sleep. We pray that Mallory continues on this path of baby steps forward, and hopefully we can soon start to think about waking her up and getting her off the vent. But one baby step at a time. :) Have a good day!

One Hour At A Time

This is how we had to live life today, just one hour at a time. As most of you know things can change so quickly when you are in the hospital. At one minute the decision was made to do a heart cath., the next minute they are thinking she is not stable enough for a cath. and want to put her on a machine called an ECHMO Machine to give her heart a rest. The ECHMO is a heart/lung machine that would do all the work for Mallory and give her heart a rest. It was discussed, and discussed and discussed and the final decision was made to wait it out. The ECHMO machine has big risks associated with it and would require surgery again so they wanted to wait and see if Mallory could start bringing her blood pressure up by just adjusting the settings on her pacemaker.

The pacer adjustments were made and we waited. Labs were drawn and sent, and we waited. We were told she is in "graft failure" which is very different from rejection. The right side of her heart still was not working as well as it should. Labs came back, things are looking the same. We waited some more. More blood was drawn for labs, we waited. Labs came back, there is a little improvement. This is what the day consisted of . All this time they had the ECHMO machine primed and ready in her room. We all figured since the machine was there in the room and ready to go, she wouldn't need it. :)

During all of this waiting Mallory decided to start running a fever again. They decided to put a cooling blanket on her again to bring it down and it worked. As the day progressed her blood gasses continued to get better little by little. She is a very strong little girl! She was constantly throwing the docotors for a loop. :)

Scott is spending the night with her this evening and he sent me "home" to get some sleep. When I left the hospital she was keeping her blood pressure where they wanted it and her blood gasses continued to be good, and they had started backing off on some of her medications, just a little bit at a time. The goal for this night is to keep things as is. No big changes, just little baby steps and most likely give her some blood products sometime in the night.

Tomorrow the new Cardiac ICU is opening. It is beautiful!! The founder of Build A Bear Workshop is from St. Louis and she donated the money for the new CICU. I have toured it and picked out Mallory's room already. I was joking with her nurse today about the comment that one of Mallorys doctors made, saying she would probably be on of the last kiddo's moved tomorrow because they want to make shure she is stable. Her nurse and I decided she would be the last one moved so we could make shure they knew where to plug everything in! :)

We also met Rev. Hal today. He is wonderful! He gave Mallory a little tree frog and explained that it stands for Families Relying On God. It's in her hospital bed with her as a reminder to her and us of how much we need God right now. Not that we could forget.

Thanks again for all the encouraging words from everyone!! We are SO blessed to have such a support system at home and all over the state of Nebraska.

A Rough Night

Mallory had a rough night last night. She is on an increased amount of blood pressure medication. It is still too low. Her right side is still having problems pumping and circulating the blood to the lungs. There could be a few things going on so they have decided a heart catherization is the best route to go to determine what the problem is. Her kidneys are working just fine, and she no longer has a fever. Those are two positives in this whole situation. She will hopefully go into the cath lab between 8 and 9 this morning.

I know you all are saying prayers for Mallory, please keep doing so! :)

Three tickets for the Roller Coaster please

Our newest journey begins. Mallory had a pretty good night. We got a call this morning at 2:45am saying that Mallory's blood pressure was "soft", which means lower than they wanted to see. She was doing fine but they did an ECHO to just take a look at the heart. The left side was working well and the right side was working o.k. They increased her sedation and also used a medicine to paralyze her so she could stay still and not work against the machines.

At 6:00am I called to find out how things were going. Things were much the same, blood pressure was up but she was running a fever of 105 degrees. When Mallory would move around her blood pressure would go down, and when she was not moving her pressure was where they wanted it. They told us to go back to bed for awhile because the doctors were going to do rounds and she is sedated and wouldn't even know if we were there. At this point we could sleep for just a bit longer and got up and ready and went to the hospital anyway. :)

The doctors ruled out any infection as the cause of the fever. They are thinking it's a "cardiac fever", which means the trauma of surgery is causing the fever, or it could be a side effect of one othe medications they are using. Wouldn't you know it, Mallory couldn't be a simple transplant. Due to her first two surgeries her anatomy is different and Dr. Huddleston had to do extra work on her PA before he could sew the new heart in. Our goal is to keep her stabilized and get the fever down. They are going to use a cooling blanket to help with that.

One of Mallory's medications is a form of Viagra!! It has been shown to help in cases of Pulmonary Hypertension. Scott was wondering if we could take any unsed Rx home with us-just in case he would need it in the future. HA HA! You have to find some kind of humor in these things or it would be a VERY long day! :)

All day long Mallory's blood pressure went up and down. They have tried numerous ways to get it under control. At 6:20pm the doctors decided we needed one more ECHO to make sure things were still looking good on the inside. One thing we all need to remember is the first 24 to 48 hours is the most critical. We also need to remember that Mallory's lungs are not used to having so much blood running through them, and they need time to rest and learn what to do with this new anatomy.

The ECHO showed there had not been a significant change since yesterday. The left side is still working very well and the right side still needs time to learn how to act. It's a waiting game. At this point in the evening (9pm) we are back to the same point we were at this morning. It reminds me of the childrens board game "Chutes and Ladders". One minute you are on the top, and the next you are back at the same starting point.

One good thing is her fever has gone down significantly. Instead of being 105 she is around 99.4 degrees. At this point we were instructed to go home and eat, drink water and sleep. Jackie her night nurse will call if there is any change at all, and we can call her any time. She will be awake all night, and Mallory is her only kiddo for the night. We will start fresh again in the morning.

We would like to thank everyone again for all the wonderful messages you have left. We want you all to know that while Mallory is in the PICU we are not allowed to even have our cell phones turned on when we are in her room. This will change when she is moved to "the floor", out of the PICU. Thanks for all the love and support I will continue to update in the evenings. God bless you all !!

Wendy and Scott

HAPPY HEART DAY!!

As most of you know Mallory has a new heart. Today is also Scott's birthday-and Jeff's too! :)
All along Scott has said the best birthday gift would be Mallory getting her new heart. He got his birthday wish. She is doing great! I thought I'd just let you all know what our day was like today.

6:30am Call from the transplant coordinator, "We have a possible heart for Mallory" . We called Scott and the grandparents and told them the news, then grabbed a couple of things and headed to the hospital.

7:10am We checked in at admitting at SLCH and were directed to check into 7 west-the cardiac unit. All the rooms were full so they put us in the treatment room. this is a room they reserve for blood draws, etc. Mallory recognized exactly where we were so we did a lot of hall walking. Our upstairs neighbor, Avrey, who just got his heart last week, was in the room across the hall so we did some visiting. The nurses drew the needed labs, got the urine sample, I signed consent forms and spoke to both the harvesting and transplanting doctors. A chest x-ray was also taken. The transplant coordinators were also in to check on us and Becki from Child Life helped make the unpleasant things a little easier-yes, she brought in bubbles! We were told everything was scheduled to start at noon.

11:45am Our nurse Kelly walked us down to the surgery waiting area. The anestisiologist came in to have consent forms signed and explain the procedure from their end. I gave the OR nurses my digital camera and asked if they could take some pictures for me. I mostly wanted a picture of Dr. Gandi (sounds like candy) bringing the heart into the surgery suite. Jean, one of the OR nurses who was also with us on March 2nd said she would make sure great pictures were taken. it just so happens Jean's sister works at the Ronald McDonald house and they, along with everyone else, have been saying extra prayers for Mallory.

NOON: This was the hardest part of the day so far. I had to walk Mallory to the doors of the surgery suite and "hand her over" to Jean. They did not give her a sedative this time so Mallory was fully aware of what was happening. It was kind of like a movie. I gave Mallory big hugs and kisses from me and Daddy, handed her to Jean, and as Jean was walking through the doors and down the hall, Mallory was reaching for me over Jean's shoulder, arms outstretched, yelling "Mama, Mama, Hug, Hug" then the automatic doors closed.

1:30pm Daddy arrives at the Hospital!!!

1:45pm the OR nurse, Barbara, came to tell us Mallory went to sleep just fine and all the lines are in. they are just waiting for Dr. Gandi to visualize the donor heart and let them know if it was a go.

1:55pm Dr. Gandi said the donor heart looks good! Mallory's chest incision was made.

2:50pm The first team is out and Dr. Gandi is getting ready to remove the donor heart.

3:20pm Mallory was put on the by pass machine and the donor heart has arrived at SLCH! Jean and Dr. Gandi both stopped by to let us know how well Mallory was doing. Dr. Gandi had a huge smile on his face and said the donor heart is great!

3:30pm Barbara came in to let us know the donor heart is being sewed in and Mallory is doing very well and is such a strong little girl!

4:04pm Barb brought my digital camera in to show us what pictures she had taken so far. WOW! You wouldn't believe what we have.

5:05pm Mallory was off by pass machine, the new heart was beating on it's own, and Dr. Huddleston was getting ready to close her chest.

6:00pm Dr. Huddleston came in to let us know they were moving Mallory up to the PICU and she did great. He was very happy with how the surgery went.

7:30pm Mary, the PICU nurse came and got Scott and me. We got to see our baby for the first time since the transplant. SHE IS SO PINK! :) Scott noticed her toes first and I noticed the tip of her nose. There was no blue to be found! Mary kicked us out for another hour so she could get all of Mallory's lines, pacer wires and tubes all untangled.

8:30pm We got to see our baby for another hour and a half, and then Mary sent us back to the Ronald McDonal house with some specific instructions. "Eat, drink, and sleep. You have had a long day and will have an even longer week, so rest now and come back first thing in the morning". Mary also gave us her phone number and said to call her as many times as we want through the night. :) They were going to sedate mallory a bit more so she wouldn't fight the vent tube. Dr. Huddleston wants her to stay intabated overnight and rest and the goal is to get her off the vent first thing in the morning.

Thank you to everyone for all the prayers and notes you have sent us. We are so grateful to EVERYONE! I'll keep you updated!! Wendy

Hope

Those who have heart have hope.

Those who have hope have everything.

We got a call this morning that there is a heart for me. We're trying not to get our hopes up but we pray that this is the real thing. Daddy is on his way down here and Mommy and me are at the hospital.

We did the web cam last night so I got to see and chat with Bobo, Sissy, Daddy and even Papa Kenny and Grandma Jan! Yay!

I know you are all praying for me! Thank you : )

P.S. Happy Birthday Da-da!

U P D A T E S

12 noon: Mallory is scheduled to go into surgery.

3:45 p.m.: They harvested Mallory's new heart & found it is a match and is pumping good! Mallory is on bypass and ready for the heart transplant. Daddy is here now too : )

6:10 p.m.: Mallory is out of surgery. Everything went really well. Her heart is pumping on it's own and her doctors are very pleased! We still have a long road ahead of us. Mommy and Daddy are being very brave. They will get to see Mallory very soon!

Just The Two Of Us

It's back to just the two of us this week. Madison was here with us last week and we had a great time! Madison got her ears pierced last Monday. She did such a great job. She was a little nervous, but didn't flinch when they did the piercing. Where ever we went the rest of the week she would tell people about her ears. :) The ladies at the check out counter at the grocery store were the most excited.

Mallory continues to hold her own and is looking great. Her coloring is SO much better than it ever has been. Thank you medicine! I didn't update after clinic lsat week because there were no changes. It went something like this. Blood pressure, weight, coloring and energy level are all good, heart is still beating, see you next Thursday. We did get the pleasure of seeing Becki from Child Life again, although she forgot to bring bubbles. Mallory didn't mind to much, she was just glad to play with Becki.

Our upstairs neighbor, Avrey, who is just over one month old got his new heart last Wednesday. He is doing very well and may get to come home to the RMH at the end of this week. It just amazes me that you can get a new organ and be out of the hospital in less than two weeks!! We are very happy he is doing so well, and at the same time we are just wondering when will it be our turn. As Lindsay, Avrey's Mom, says, "Hopefully you won't get to meet Avrey right away because he will be coming out of the hospital and you will be going in". We hope that is true!

Phone A Thon Totals

The numbers are in! The K-SHE 95 Radio A Thon and on-line auction for the Ronald McDonald House Charities brough in $17,000.00! Four thousand more than last year!! As Ronald would say..."Ba Ba Ba Ba Ba, I'm Lovin' It!"

Phone A Thon

We had such a great time at the Phone A Thon! The unofficial count as of this morning was $7,000 raised from the Phone A Thon. They did not have the numbers from the on-line auction yet. Hopefully all numbers will be in soon.

Logan had his own field trip of sorts at the K-SHE 95 Radio Station. We were waiting to go on air, and the DJ was showing him how the computer plays all the music, and what each button does. Then, the DJ pulls out a record album and asks Logan if he knew what it was. Logan had no idea!! When he told Logan that was how they used to play music on the radio and they used a turntable, Logan looked at him and said, "What is a turntable and how do they get music on plastic?" We all got to say "Hi" to Scott when we were on the radio. Mallory loved the microphone and wouldn't stop saying "Hi Dada" . Scott was listening via the internet.

Guess who was on air right before me? Ted Nugent. Yep, thats right. he was only supposed to talk for an hour and ended staying for three hours! the station manager was trying to get me to meet Ted and take a picture, but since he stayed so long they had to rush him to his next appearance. Oh well, I wouldn't have any idea what to say to him anyway. :)

Clinic Visit

Yes, today was another clinic visit. I keep hoping I can cancel this appointment! Mallory is 22lbs! A record for her. She is still doing well. Logan had a good time meeting her Dr. and the Transplant coordinators. Becki from Child Life also came to our clinic visit to say Hello and play with Mallory for a bit. When Mallory sees Becki she gets very excited and says her name right away and then "bubbles?" Becki has the best bubbles on earth, they are called Gazillion bubbles, and Mallory just loves blowing bubbles with her. At our last clinic visit we had bubbles all over the floor, Becki, Mom and Mallory!!

They have done two heart transplants in the last two weeks. Everyone at clinic said their transplants always come in groups of three, so we are hoping Mallory will be included in this group of three. At times I feel bad about praying a heart will come because I know another family has to suffer a great loss for our family to find joy. It's a bittersweet time. I keep praying for the families who are giving such a wonderful gift-the gift of life. I know all of you will keep those families in your prayers, as well as checking the donor box on the back of your drivers license and letting your loved ones know you want to be a donor! :) Yes, this will be the new soap box I will be standing on!

Happy Spring?! It doesn't seem like spring when you have snow falling again does it? Here in St. Louis it has just been raining and the wind has been blowing. Next week it is supposed to get back into the 60's.

Thanks again for posting notes on Mallory's blog. We love reading them over and over again!!

Our Hero

Mallory has been chosen as a "House Hero" here at the Ronald McDonald House. If you go to the website www.rmhcstl.com you will see the article they did on her. We have also been asked to be one of the Ronald McDonald House families featured in their Phone a Thon. Friday the 13th we will be going to KSHE 95 Radio Station and telling anyone who is listening , about Mallory and our family, and about our experience so far at the Ronald McDonald House. This is their biggest fund raiser of the year. We are honored to help the RMH in any way we can.

Logan thinks it's pretty cool to go to a real radio station!

Easter

Well Easter has come and gone and the bunny forgot to put a new heart in Mallory's Easter basket. We were lucky to have the five of us together on Easter. It didn't seem like Easter since we didn't go to church, but the kids did get to participate in an Easter egg hunt here at the RMH and the bunny did remember we were in St. Louis this year and not in Syracuse.

Logan is spending the week with me and Mallory and we are loving every minute of it! Mallory wakes up in the morning saying "Bobo, up, up!" She loves her big brother so much. She has laughed so much in the last few days since Logan has been here, and not a little laugh but the deep belly laugh that can only come from watching your big brother acting silly. :) Madison will spend next week with us. We can't wait!

Thank you to everyone for all the Easter greetings! We always love hearing from home. Take care everyone and I'll update again at the end of the week.

Wendy, Logan and Mallory

Miss Mally