Our little Wright Family

2/20/12

Love you Daddy...

Just after Daddy arrived....

Oh my goodness, Daddy is so much fun!

Reading a story while doing a shake treatment...:)

Having Bobby home has been the best...

I just wanted you all to know that Carla is feeling much better. Bobby is here until Wednesday morning and she will be getting her second IV treatment tomorrow. Bobby arrived yesterday and having him here with us makes us feel more at home. We are sad he has to leave on Wednesday and the only thing that would make this better is if Cody was here too! Sure do love our family :) I will post pictures in the near future, but as of now, you will have to wait :)

Love, Jen

2/16/12

A Hard Night...

Carla had a hard night last night. Yesterday she complained of a headache, but I wasn't sure if she was bluffing or if she really had a headache. We gave her some Tylenol and then took her to her cardio appointment at 1:30. She seemed fine and after her appointment we took her Grandma to the train station and then came home. Later in the night Carla complained again that she had a headache. I gave her Tylenol again around 7:30ish and we went to bed after her nighttime meds. Just a little while after midnight Carla woke up crying that her neck and head hurt really bad. It was alright to give her Tylenol again, so I did...and she promptly puked it up. We got that all cleaned up and I put a cold washcloth on her head. She woke up again about an hour later and threw up again. She also had a fever....I kept checking it and hoping it would come down. The highest it got was 102, but I knew that if we could break the fever that she could feel better and sleep. She was also breathing a little weird and her heart rate a bit fast. I gave her ibuprofen around 4a.m. and then half an hour later was able to give her Tylenol again...finally, her fever broke. At about 7 a.m., she coughed out a fairly large cast. This morning she has been in a good mood but then a few minutes ago started complaining again that her head hurts...I had made her bacon and eggs for breakfast and she didn't eat a single bite. Bacon is Carla's favorite, so I know she is not feeling well at all when she won't eat bacon :( We are snuggling on the couch and hoping Carla starts to feel better. I'm waiting to hear back from the docs at Children's to see what they want us to do. It just makes me super nervous because if she is going to react this way to a med that is supposed to boost her immune system...how is she going to react when they give her the drug that is supposed to attack her own antibodies! I guess we will just have to wait and see what happens. Bobby is coming up here on Sunday so that he can be here for Carla's next infusion. I am so glad he is coming and Carla is overjoyed. She hasn't seen her Daddy since Christmas, so this is a much needed visit. She misses her family so much. Being away from our family is not the best. I hope these treatments work and we can get her a new heart soon....

Love, Jen

2/14/12

Antibody Treatments...

So, as I write this Carla is receiving the first of four IV injections to bring her antibodies down. She is tired and a little crabby...here's to hoping it works and helps her get a new heart soon. The way these four treatments go is such... The first treatment she is getting is IVIG. IVIG kind of gives Carla's immune system a boost, so that she doesn't catch any viruses. The second and third treatments are a drug called Rituximab. Rituximab brings Carla's own antibodies down, so that she can be more eligible for a new heart, and then the fourth treatment is of IVIG again. I suppose that makes perfect sense.

We see Carla's cardiologist tomorrow for a regular check up and then afterwards I have to take my Mother in law to the train station to go back home. And once again, Carla and I will be alone. It was so nice for me to get to go home for a week and then come home to another adult to visit with and help out with Carla. But, unfortunately, Mom has to work for a living too. So, she must go home. We are hoping that Bobby can come and visit soon and then my Dad & Sue will be coming to visit the first week in March. So, we will be having a lot of company. Company is good.

Crabby girl...

Self portraits always cheer up a girl :)

Carla, taking my picture as I try to help her hold up the camera.

Senior Night

Saturday night was Senior Night in Cascade. I was so happy to be there and we are so proud of our son. When they announced him and his accomplishments they also said that "Cody would like to give his Mom a special thanks for coming back from Seattle, where she is staying while we await his sister's heart transplant." We are so honored to have such a thoughtful, sweet, and grown up young man for a son. Thanks for being ours Cody. You are the best! :)

Cody :)

The line up.

Our little Wright Family, minus one.

With Cody's Papa :)

The Cheerleaders :)

Cody, walking us out...

A special thanks to Mom.

Hugs and a T-Shirt from Sydney.

Darby and Cody hugging

Bobby, telling Cody how proud we are of him.

Hugging my Boy.

Super Happy and proud.

Happy and Proud :)

Sydney :)

Go Badgers!!!

2/7/12

Home Sweet Home...for a little while anyway.

Friday afternoon I boarded a train leaving Seattle, rode for 17 hours and was greeted by the two most handsome guys! Bobby and Cody picked me up in Shelby (about 2 hours from home). We drove to Great Falls, had some lunch, and then came home for a little while before hitting the basketball games in Cascade. I can't even explain how much I needed a break from Seattle and how much I missed my family at home. I am hoping to be fully rejuvenated before I head back on Sunday. I chose this week to come home because it is a special week for Cody. Saturday is Senior night at the school and of course, I HAVE to be home on the night that they honor this years Seniors, before their last home game. Here are some pictures from Saturday's game...

Cody, taking it down...

Cody

Going around his defender.

Shooting a free throw

And swish...

Sydney and the other cheerleaders.

Carla is with her Grandma Wright in Seattle. Between yesterday and this morning she has coughed out 3 small casts :( I'm sure that I don't have to express how nerve wracking it is for us that this is going on at all, let alone while we are not there... But, I have the utmost confidence in Bobby's Mom and her ability to take care of Carla. She said that Carla is active and that her color is good. She is not having a hard time producing the casts and Mom is taking good care of her. So, I'm not going to rush back to Seattle.

Tuesday, the 14th, Carla will get her first treatment to bring down her antibodies (and her immune system). I am nervous about the whole thing but we think (and the doctors think) it is the right move to make and that it will help Carla get a heart faster. The treatment is the first of four and will be about a six hour IV infusion of what is called IVIG. I hope that she tolerates everything well. I am becoming so heartbroken about everything that Carla has to go through. And yes, she takes it all in stride. But I feel like the kid needs a break! She has had more shots, meds, surgeries, procedures and pokes than any person should have in a lifetime! She needs some serious fun .... I can't wait until she gets her new heart, is stabilized and we can take her on another dream trip involving Princesses. I don't know how we will be able to get it accomplished, but I do know that Carla deserves it, so we will find a way to make it happen! Let's shoot for a year or so from now...maybe for her 6th birthday...we will see.

That's all for now folks!

Love, Jen

2/1/12

Bringing the antibodies down...

Carla and I had an appointment today with the transplant team to discuss what they have decided about Carla and her high antibodies. They want to start her on a therapy to bring them down. Unfortunately, the therapy will suppress her immune system, so she will be more likely to get infections...but they believe it will open her up to more heart options and will speed the process of getting her a new heart. Right now her antibody levels make it so that 7 of 10 hearts wouldn't work for her. If we can bring the numbers down, maybe we could get her a donor heart a bit faster.

While this all makes perfect sense to me, I can't help but to feel overwhelmed. Sometimes I feel like I am a stack of blocks and the Lord just keeps piling the blocks on...I wonder when I'm going to fall over into a pile. But, even though things are hard, I KNOW everything will be alright. Carla will get her heart and eventually we will be reunited with our family. Until then, I need to remember to breathe in and out. I need to remember to pray and to trust in The Lord's Plan.

Please keep us in your prayers. Thank you!

Love, Jen

p.s. Here are some cute pics :)

Sliding at the park yesterday.

She's having fun!

Woo hoo!

Today, all dressed up from going to the doctor (Carla has to get dressed up for the doc, you know).

Super hammy Toot!

Dancing around.

She is so full of life!

And joy..

And happiness....

This is what keeps me going every day :)

1/30/12

You have reached the end of the internet...

The other day I wanted to add Cody's Senior picture to the side of the blog and guess what? I found out that I have run out of free picture storage space on the blog! So, for the reasonable price of 5 dollars a year, I was able to purchase another 20 GB of storage...so, I can upload more pics :) Otherwise you would just get stuck reading words, with no fun pictures to look at...and we wouldn't want that! Especially since I have such CUTE pictures to add today!

Friday Carla and I went to Renton to spend the weekend with Beverly. She took us to her hairdresser and Carla got her hair cut! Yay! She got to sit in the kid car for the cut, which made her super happy.

Check out that cool ride.

Carla was pretty excited :)

After getting her hair done, we ventured over to Little Caesars for pizza!!!! Yay! My favorite fast and cheap treat! We all enjoyed a slice in the car and then headed to Sam's Club to buy myself a bluetooth. Now I can answer my phone if I am driving somewhere and it rings! Yay! After getting back to Bev's house JD (the kitty) needed some lovin. So, Carla and Bev snuggled him up. It was sweet.

Beverly, Carla and JD snuggle up on the chair.

Carla and JD. She sure does LOVE JD.

A side shot of Carla's hair.

I am really happy with the job Bev's gal did! I didn't have to re-cut it myself...which is always a bonus!

Saturday, Bev's next door neighbors were out cleaning up the tree debris from the last couple weeks of snow and wind. Carla just couldn't stand herself and so took them over some cookies she and Bev had made earlier that day. She is such a social butterfly and is always so excited to make new friends :)

Headed next door :)

Sunday I ran home to pick up a couple things, so that we could spend one more night with Bev. At the apartment door was a package Bobby. His customers, Mr. and Mrs. Barnes, had given him a present for Carla. Here she is opening it up!

Carla was super excited to open up her present!

Reading the card.

Going at the wrapping...

IT'S A BEAUTIFUL DOLLY!

Loving on her dolly.

Carla loves her baby.

We promptly made her a make-shift bassinet and put the baby to bed.

It's an American Girl baby dolly and she named her Aurora Jen Wright (after her favorite Princess and her Mommy) So sweet. Thank you to the Mr. and Mrs. Barnes, for thinking of us and sending Carla such a lovely baby girl.

Also, I spoke with the transplant nurses and we have an appointment on Wednesday to discuss what the antibody specialists think we should do about Carla's high antibody levels and moving forward with transplant. I will keep you posted :)

Love, Jen

A special thank you to Beverly for spoiling us, loving us and letting us be your family :) We sure do love you! It is not often in life where you have a friend as special, sweet and wonderful as you. We are so blessed.

I Will Make Your Heart Whole Again

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, “Will I beokay with only half of my heart?" Jesus replies,” Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." Author unknown

A Beautiful Poem

When you're going to have a baby. It's like you're planning a vacation to Italy. You're all excited. You get a whole bunch of guidebooks and you learn a few phrases in Italian so you can get around. When it comes time, you pack your bags and head for the airport--- for Italy.Only when you land, the flight attendant says, "Welcome to Holland."You look at one another in disbelief and shock and say. "Holland? What are you talking about? I signed up for Italy!"But they explain there's been a change of plans and you've landed in Holland, where you must stay. "But I don't know anything about Holland! I don't want to stay!"But you do stay. You go out and buy some new guidebooks. You learn some new phrases and you meet people you never knew existed. the important thing is that you are not in a filthy, plague infested slum, full of pestilence and famine. You are simply in a different place than you had planned. It's slower-paced than Italy, and less flashy than Italy, but after a while, after you have the chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland even has Rembrandts.But everyone else you knew is busy coming and going from Italy. They are all bragging about what a great time they had there, and for the rest of your life you will say. "Yes, that's where I was going. That's what I had planned."The pain of that will never, ever go away.you have to accept that pain because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy you will never be free to enjoy the very special, the very lovely things about Holland.

Treatment

The most commonly pursued treatment for Hypoplastic Left Heart Syndrome is "staged reconstruction" in which a series of operations, usually three, are performed to reconfigure the child's cardiovascular system to be as efficient as possible despite the lack of an adequate left ventricle. These surgeries do not correct the lesion, and are instead considered "palliative".

The first operation in the staged approach is known as the Norwood operation and is typically performed in the first week of life. With the Norwood operation, the right ventricle become the systemic or main ventricle pumping to the body. A "new" or "neo" aorta is made from part of the pulmonary artery and the original, tiny aorta, which is reconstructed / enlarged to provide blood flow to the body. Finally, to provide blood flow to the lungs, a small tube graft is placed either from an artery to the lung vessels (called a modified Blalock-Taussig shunt) or from the right ventricle to the lung vessels (called a Sano modification). Because of the extensive reconstruction of the aorta that must be done, this operation is one of the most challenging heart surgeries in pediatrics.

The subsequent operations in the staged reconstruction plan are the bi-directional Glenn procedure, typically done at 3 to 6 months of age, and the Fontan operation, typically done in children older than 2 or 3 years.

Carla's Story

August 7, 2006, found out I was going to have a baby! This was my first pregnancy and I was both excited and scared. Bobby was completely excited from the get go. I felt very good through pregnancy and had no morning sickness at all. I craved sweets, which surprised me because I normally crave salty foods. I also felt the urge to stick my tongue out at people. My due date was set for April 10th and I was planning on working until I had the baby. March 8th, a week after Carla dropped, she had somehow positioned herself on the tube going from my left kidney and was causing my kidney to seize up and severe back spasms. I was forced to lay in bed on my right side until she got off the kidney. It cleared up and I was planning on going back to work Monday, April 2nd, but that was an April fools joke on me. Sunday night at 10:59 p.m . I felt a very hard contraction as I got up to go lay down for bed. I told Bobby I had a hard contraction and then thought I would go to bed and see how things progressed. I was told that labor takes a really long time, so when my next hard contraction was 11 minutes later and then 9 and then 5 we decided we had better head off to the hospital. By the time we were half way there my contractions were 2 minutes apart! We got to the hospital a little before midnight and they quickly moved me into a labor room. Things were progressing really fast and I was told that their was no time for an epideral. I was not very happy when I first found this out and cursed the anesthesiologist. Before I knew it (and before the doctor was back in the room) I was told to start pushing. Wow, that helped the pain. Every time I had a contraction I would have to push as hard as I could. The doctor became a little concerned about the baby’s heart rate, because it was slowing every time I pushed, so he had me breath through about 5 contractions without pushing . This was ridiculously painful! I whimpered a little bit and Bobby held my hand, looked me in the eye and told me I could do this for Carla. I made it through until the doctor said I could push again. But now, what he wanted to do is have me push three really hard pushes per every contraction. Apparently I started turning purple, so they put O2 on me and told me "you have to breath!" I thought I was breathing! Dr. Handwerk had the nurse go get the foreseps and was considering an emergency c-section if the baby didn’t come out quickly. Thank the Lord, Baby Carla was born at 2:21 a.m., just 3 hours and 22 minutes after my first contraction. They let us hold and take pictures of Carla for almost an hour before they took her away to put her in an incubator to warm her up. Around 4 a.m. I went down to the nursery and watched them foot print her and give her a bath. I then dressed my tiny little girl in what looked like a gigantic outfit! (She was only 5 pounds 7 ounces, 19 inches long.) I felt so awkward dressing her, like I didn’t know what I was doing and I might mess it up. I told Carla to be patient, I was an amateur. The nurse then took 4 pictures of Carla and had me pick my favorite to put on the hospital web page. I took Carla to my room, fed her and then she fell asleep. After a very short rest I began taking pictures of the baby and making phone calls to my family and friends. Throughout the day a lot of our family came to welcome Carla to the world. Her Big Brother, Grandparents, Great Grandma, Uncles, and Aunties were all there! Everybody took a turn holding her and pictures a plenty were taken! By about 4p.m . I was feeling exhausted and developed a little bit of a fever. The family took off and Carla went to the nursery so that I could take a long deserved nap. 45 minutes later Carla’s doctor came and told me that a nurse in the nursery had heard a heart mur mur and they wanted to do an echo cardiogram to make sure everything was ok. So, off Carla went for an echo cardiogram... Afterwards a doctor and nurse brought the baby back to me and told me that she was chilly and would like some skin to skin time. I held her and tried to keep her warm, she had been hard to keep warm since birth, they said because she was small. After a period of time the doctor came back and told me the radiologist didn’t like what they saw in the echo and that they needed to put Carla in the NIC Unit. I didn’t even know what the NICU was, but I was seriously freaked out. Tears streamed down my face as they took my baby away, I suddenly felt so alone and helpless. I called my husband, who had left to let me sleep, and told him what was going on. He gave me words of encouragement and said he was almost to the hospital. Bobby got to my room and soon thereafter a new doctor arrived. He was a Pediatric Cardiologist and explained to us that Carla had Hypoplastic Left Heart Syndrome, and what that entailed. He then had us go to the NICU to see the baby. Bobby’s folks showed up around this time and went with us to the NICU. Talk about a horrifying experience. There before us was our beautiful baby girl, but she didn’t resemble the cute little girl in all of the pictures we had taken just a couple of hours earlier. She had all kinds of tubes and monitors all over her body and had a ventilator down her throat to help her breath! They had given her something to paralyze her, so she was sleeping and not moving at all. The nurses in the NICU took pictures of her and gave them to us. We got the feeling they were giving us those pictures because they didn’t think we had any pictures of her and they expected her to die! We wanted nothing to do with those pictures. The Cardiologist explained to us that Carla would have to have a series of surgeries to survive her HLHS and that he didn’t even know if she was well enough to have surgery. They had contacted Salt Lake City and an airplane was on its way to come and get our daughter. We were told that one of us could go with her, but not both of us. In a state of complete shock Bobby and I needed each other. So, we opted to stay at the hospital and wait to hear from the doctors in Salt Lake for further direction. After we were done in the NICU Bobby and I went back to my hospital room, curled up on the hospital bed and just held each other. Around 2:20 a.m. the doctors came back and let us have one last look at our daughter before she was shipped off to Salt Lake. We could hardly stand to look at her it was so heart wrenching, how could this be happening to us and to our precious baby girl. We were so excited and she looked so terrific before all of this happened. I just laid in bed and prayed and prayed the rest of the night. Salt Lake was supposed to call us the next morning, when we didn’t hear from them right away in the morning, we called and they said they would call us back. They did not get back with us, so we called again. Finally we decided to go home, so gave them our cell phone and home numbers and told them to call us at those numbers when they were done evaluating Carla. Leaving the hospital without our baby was nothing less than a heart wrenching experience! We stopped for lunch and I cried. This was certainly not the way I envisioned this day. Bobby kept telling me to stay positive. I tried but I just missed my baby so much and couldn’t understand how this could be happening. After we got home I took a shower and then Salt Lake City FINALLY called. They said that Carla’s condition was borderline and that they might be able to do a less evasive balloon procedure. A group of doctors were going to review her case in the morning and decide for sure what needed to be done. Until then, we were to sit tight and wait until we hear from them. Wednesday morning we called Salt Lake and were told that the doctors had decided that Carla would have a better chance, if we did the three part surgeries and that we needed to get to Salt Lake today, because they had scheduled the surgery for tomorrow morning. Bobby’s Dad, Roger, volunteered to drive us to Salt Lake and be with us through the surgery and his Mom, Tammy, offered to stay with Cody. Bobby's Aunty Punky donated $600 to us so that we would have money for the trip. I called my Dad and cried to him about my fears as I packed. He convinced me to keep hope alive and wanted me to stop at his house when we got to Helena. We packed up Dad’s van, kissed our Sunny Son goodbye and hit the road for Salt Lake. We saw my Dad and Sue in Helena, who had prepared us a cooler full of food and a credit card for whatever we needed. We arrived at Primary Children’s Medical Center around 10 p.m. and saw our baby girl again. We were greeted by an all too bubbly nurse, as our daughter lie in a little bed with tubes coming out of every tiny body area. Our hearts were breaking into pieces. Next we were greeted by an intern who asked us if we considered doing nothing to save our daughter’s life. Bobby’s response to her was "We are not just giving up on her." We were told that the doctors wanted to talk to us in the a.m. before the surgery and that they had a sleeping room for us in the PICU waiting area. Bobby and I touched our little girl’s hand and said goodnight. We were told not to stroke her, because with all the meds it would be uncomfortable and over stimulating for her. So, we simply placed a finger on her hand, and told her how much we loved her. The sleeping room at the hospital was just that. It was probably 6 feet by 10 feet with nothing but a twin bed and a chair in it. Bobby and I cuddled up together in that tiny uncomfortable bed and did our best to rest for the night. I don’t think either one of us got any sleep. Around 6:15 we heard a knock at the door. It was a heart doctor coming to talk about the surgery Carla was going to have that morning. After she left we met Dr. Kouretis, the surgeon who would be operating on our precious Baby. He seemed very competent and answered lots of questions. He left and wanted us to come to the PICU in a little while to see Carla off to surgery. We got ready and then went off to the PICU to say goodbye to our darling daughter. We walked with Carla and the doctors to the area where surgery is done. They told us to go to the waiting room and that someone would come and update us as to how things were going. We sat and waited in the surgical waiting room with a bunch of other parents. Some were there for what seemed like menial reasons, and they were upset. I remember thinking how ridiculous some of the parents were to be crying over what seemed to be TINY problems with their child. I wanted to shake them and tell them how lucky they were that their baby wasn’t having the first of three open heart surgeries, just to be able to LIVE! In retrospect I understand that any problem with a baby or child is going to be traumatic for the parents. The gal at the waiting room desk called out our name and told us that they had just started opening Carla up. After about an hour a lady doctor came and told us what was going on with Carla. She reported back just about hourly, updating us on how the surgery was going. Everything seemed to be going well. At the end of the surgery the doctors seemed to have a hard time warming Carla back up and then had a problem with her bleeding. The surgeon came and talked to us after the surgery and told us about everything. He said he may have to go back in and do some "house keeping" if something didn’t change. We went back to the PICU and saw Carla after surgery. She looked horrendous, of course, but it was getting easier to see her that way, because we were getting more used to it . The doctors had warned us that they wouldn’t close her chest up after surgery, because there would be too much swelling. So, we saw her with a padded dressing over her chest. After we looked at her for a little while we were able to hook up with a social worker, to see if we could get into the Ronald McDonald House. Thank the Lord, we were able to do that but we had to check in pretty quickly. We went to tell the doctors that we were leaving to check into the Ronald McDonald house and they had Bobby sign some paperwork so that the surgeon could go back and do the "housekeeping" issue with the blood in Carla’s chest. Bobby signed the paperwork and we left. We got to the Ronald McDonald house and checked in. They gave us a room with 2 twin size beds, one for Roger and one for Bobby and I. It wasn’t the best sleeping arrangement, but it was better than nothing, that is for sure! The hospital called and said that Carla’s little housekeeping issue was cleared up and that she was sleeping and fine. Bobby and I took a little nap - Roger went to call Mom. Later that evening we went back and saw Carla. Friday morning we went and visited Carla, then went to Walmart and Ross, because somehow when I packed, I forgot to bring any shirts for myself. Tammy brought Cody, Thomas and our car to Salt Lake on Saturday Cody got to see his baby sister. She was very swollen and hooked up to wires and tubes galore, but we told him to remember that everything hooked to her was there to help her. So, we hoped that would help. We took a picture of her, so that he would know what to expect when he saw her. Easter Sunday we got a call in the morning that they were going to try to close Carla’s chest. Later we got the call that they had to leave it open for a little while longer, because her heart rate dropped when they tried to close her. The doctors didn’t consider this a set back at all because closing her so soon was maybe a little over zealous. Monday morning Tammy, Roger, Thomas and Cody left to go back home. Bobby and I settled into a schedule of visiting Carla several times a day. It was hard because she was just in a tiny crib bed, hooked to tons of equipment and mostly would sleep. Every once in a while she would wake up and look at us. We would talk to her and get all excited whenever she woke, but the nurses didn’t want us stimulating her very much because it would make her blood pressure rise. Whenever she woke up they would give her morphine and she would fall back asleep. We usually went to see her three times a day, for an hour or two at a time. It seemed like every time we went to see her she was doing better and better. We were so happy to see her progressing so well and knew that our prayers were being answered. Friday morning (April 13th) they took Carla off the ventilator. She looked relieved and for the first time since she was born we got to see our little darling’s face without a ventilator. After about an hour the nurses said that her gas levels were not good and then they put a contraption on her head that forced O2 down her nose. She hated that so much - it broke my heart to see her so unhappy - she cried and cried. I knew her poor little throat was probably really sore :( Bobby and I left the hospital that morning feeling very sad for Carla. It was a hard day. When we went back to see her that afternoon Carla only had a normal little O2 canula in her nose. She was breathing well and doing much better. Thank God. My Dad & Sue came to visit Friday afternoon and Saturday Norm and Donna flew in. It was good to have all of the family around to give us support and to love Carla. Monday(April 16th) morning Tammy arrived on the bus at 5:30 a.m. and Bobby left with Dad and Sue to go back home - he had to get back to work. The doctors took a RA line out of Carla and Bobby was able to hold her for a minute before he had to leave. It was difficult because she was hooked up to so much, but nonetheless it was wonderful. Tammy and I visited Carla on pretty much the same schedule Bobby and I did. She was getting better every day and was moved out of the PICU to the 3rd floor on Wednesday April 18th. Her room on the third floor had a chair that turned into a bed, a rocking chair, a bathroom and a television. We could hold Carla all we wanted, so we held her a lot. I spent a couple nights at the hospital and Tammy stayed at the Ronald McDonald House. I was getting no sleep at the hospital, so Tammy and I decided to take turns spending the night while the other got a good night’s rest. It worked out really well. Aunty Jeannette, Uncle Bill and Adam came to visit on the weekend. Aunty Jeannette held Carla for many, many hours. Monday morning Carla had her suck and swallow test and passed!!! The doctors were worried, because her little voice was so nonexistent. She was very horse from being on the ventilator, so you could barely hear her when she cried. Since Carla passed the suck and swallow test it was ok to give her a bottle. It was very hard and frustrating at first. I could only get her to take about 2 ml at a time. The speech therapist got her to take 9 ml, and that made me feel very inadequate as a mother. The doctors decided that Carla was ready to be released at the end of the week (April 27th) whether she was taking a full bottle or not. We would feed her by bottle for about 15 minutes and then give her the rest through her feeding tube. They taught us how to administer her medications and tried to have me learn how to place the feeding tube. I was very reluctant and decided that I would not be placing my baby’s feeding tube - there were doctors and nurses in Cascade so I figured if worst came to worst I could call one of them. Wednesday they did a car seat test where Carla sat in the car seat for an hour, to make sure her stats would be ok. Friday finally arrived and we were discharged to go home. The nurses provided us with formula, all the medical supplies we would need and oxygen. We were told to stop about every hour or so to let the baby stretch out. I filled Carla’s prescriptions and we were finally on our way around 11:30 a.m. On the way home things went very well. Tammy and I had a little trouble with the formula and feeding tube at first but after a period of time we seemed to have gotten it all figured out. We finally made it to Helena around 10:20 p.m. We were greeted by my Dad, Sue, Grandma Morgan, Aunt Bernie, Shelly & Bruce and Holly. I made everyone sanitize and took Carla off to the bedroom to change her diaper. Of course she immediately pulled her feeding tube out and were in the dilemma of how we were going to get it back in. Tammy called the ER and finally got someone who would put it back in. We visited for a little while and then were off to the hospital to get the feeding tube put back in. My Dad followed in his truck, so that he could be there for us. The ER experience was nothing short of horrific. The gal put the feeding tube back in but failed to think ahead about tape, so after it was in, the baby screaming and flailing around, she was trying to find tape. The nurses were holding Carla’s little arms so hard that they left a bruise. :( I was really annoyed and vowed that if the tube ever came out again, I would replace it myself - something I ended up doing 2 days later... So finally, around 1:30 in the morning Carla and I arrived home and her Daddy was able to hold her again. He had only held her for a couple of minutes right before he left Salt Lake, so it was really nice that he finally had his little girl in his arms again. It was time to go to bed, but before hand we had to figure out how the feeding pump worked! After several groggy minutes we figured it out - Carla was on a two hour feeding schedule, so we were up and down dealing with that all night. In the morning our home nurse came and checked Carla’s vitals and watched her eat. She was not taking a lot by mouth, so most everything was going into the feeding tube. The drill was to try to feed her orally for 15 to 20 minutes and then to put the rest in the feeding tube. The nurse came daily at first and then tapered to once a week and then she was finished. Mainly what she did was weigh Carla, take her O2 stats, listen to her heartbeat and watch her eat. She left her baby scale for us and had us weigh the baby naked every morning before she ate (you can imagine how much Carla loved this!) Carla was gaining weight daily, so that was a good sign. Monday, April 30th Carla went to see her pediatrician, Dr. Hinz, and Tuesday May 1st she went to see her cardiologist, Dr. Ruggerie. Dr. Ruggerie was all gloom and doom and made me cry again (the first time was when he was telling us about Carla’s condition and he wasn’t sure if she was eligible for the surgeries). He scheduled us to come back and see him again June 6th. Dr. Hinz had us come back weekly at first and we also saw a speech therapist that first week she was home, to help us with Carla eating orally. The speech therapist told us to give her a binki and that it would help develop her suck reflex. So, we started giving her one every chance we had. It was working because she started drinking more and more of her food. May 9th was Bobby and my 9th anniversary, so Grandma Tammy watched Carla. She worked with her the whole time she had her, and had her take all of her food orally. It took her about 2 hours to drink the first bottle and then she had to start the second one. Tammy was convinced that we should start trying to force Carla to take everything orally. I didn’t think she was ready quite yet, but she was getting closer. Carla was a funny baby, because she would be feeding orally and then would "fall asleep" we would hook up her feeds and she would wake up. We decided that she was playing possum because it was so much easier just to have her food given to her via the feeding tube. So, we started tricking her. We would feed her until she fell asleep, then bring out the feeding pump and turn it on, after it beeped a few times Carla would open her eyes and we would start feeding her orally again. Silly little babe-ers. I had gotten into the habit of changing Carla’s feeding tube weekly - it actually wasn’t as bad as I had thought it was in the beginning. I would also try keeping the tape on her face in good shape, so that she couldn’t pull the O2 and feeding tube off. Wednesday, May 16th I was cleaning the tape off of her face when I pulled her feeding tube out a little bit. I decided to take it out and figured I would replace it when I was done cleaning all of the tape residue from her face. While cleaning the tape off, I decided that I was going to try and leave Carla’s feeding tube out and see how she did taking all of her food orally. So, I decided that I would keep track of the milliliters she had to have and so long as she took everything she needed in a 24 hour period, she was good. I started feeding her as much as she would eat every time she fussed a little bit. She started taking more and more orally, and was doing a much better job. The kicker was when I changed nipples. She was using a Gerber Nuk nipple and I changed her to a Dr. Brown’s Bottle and nipple system. At that point she started taking her food so much easier! When we went to the Dr. on May 25th she was still gaining weight and he was pleased that we had started feeding her on an on demand basis. Funny, because I thought he would be mad at us for taking matters into our own hands and not talking to him about it. But, no, he was happy that she was acting more like a "normal" baby. On the afternoon of the 25th I decided to take Carla off of her O2 and see how her Stats tolerated it. She did pretty well, but not perfect - we at that point started keeping her off of the O2 most of the time but giving it to her when she looked like she needed it. On June 5th Bobby took Carla to see Dr. Hinz and she was given her immunization shots, weighed and measured. She weighed 8 pounds and was 22 inches long! Dr. Hinz took her off of her Zantec, because she didn’t seem to be having any reflux issues and she had out grown the dose they had originally given her. We took her to see Dr. Ruggerie on June 6th. They did an echocardiogram and chest x-ray. Dr. Ruggerie took her off the diuretic that she had been prescribed at Primary, so that was a good sign. He, again, made me cry when I asked him a simple question. I felt like he was trying to suck any hope away from me that Carla would have somewhat of a "normal" life. He discussed brain damage, neurological damage and her having a low IQ. Carla had been progressing well and hitting baby mile markers just like any other baby. In fact, she seemed to be ahead of the game! So, I knew she did not have these problems, but nonetheless I spent a couple of hours crying after our meeting anyway. I was starting to feel like the bastard was actually trying to upset me! I know, sounds crazy, but I still felt that way! We scheduled her next appointment for July 10th and I decided I wasn’t going to go. Bobby is less emotional, so I would send him on his own. June 19th Carla had another appointment with Dr. Hinz. She weighed in at 9 pounds 6 ounces and was still 22 inches long! The doctor said some of the weight gain has to do with her being off the diuretic, but he was pleased nonetheless. He didn’t think that we needed to continue to bring her back so often, so scheduled her next appointment for August 6th (her four month check up). We had a low key 4th of July - I had the day off so took the opportunity to dress Carla in 3 or 4 different outfits and took pictures - it was really fun. On July 8th we had a bunch of family over to celebrate Cody’s 14th Birthday. It was the most people Carla has ever been around since she was born! She was held a lot (by very clean relatives who had washed and sanitized). By the end of it all she threw up and cried! My Aunty Jeannette (a nurse) was pleased at how loud and long she screamed and said that she must be strong to be able to cry that loud. It reminded me of when she was at Primary how the heart docs would all try to make her cry and were displeased with her scream. Mostly she was horse from the ventilator. She actually didn’t even get her strong voice back until the middle or end of May or so. Carla’s appointment with Dr. Ruggerie was fast approaching and I had decided that I was going to have to tough it out and go with Bobby and Carla. I just figured it would be a lot harder not to be there than it would be to be there. July 10th we went and saw Dr. Ruggerie. He was like a new doctor or something! He was pleased with Carla’s color and strength and said that the doctors at Primary would be pleased to see her. He told us about the Glenn procedure and also that her heart is looking like it is straining and that after the Glenn it will have less of a load. He said that they would get hold of Primary and that we would be getting a date for Carla’s next surgery pretty soon. He said to expect the surgery to be in the next 6 to 8 weeks. After a week I hadn’t heard from Tammy at Ruggerie’s office, so called to see why we hadn’t heard back from her regarding a surgery date. Tammy said that the way the process worked is that they gathered all of their information on Carla and overnight it to Primary. Primary has a bunch of doctors look at it and then they would call me to schedule the next surgery. She said that Primary would probably not call for another week or two. I called Tammy again on July 30th and she said that she had talked to someone at Primary on the 27th, so if we hadn’t heard back from them by Friday, to give her a call. All this waiting is driving me over the edge! I just want this surgery to be done with and am sick of it looming out there! Plus, Dr. R’s notes say that Carla has a "worrisome right ventricle" which makes me feel VERY worried myself! I know that after her next surgery her right ventricle will be working way less hard, so I just want that to be over with. On the other hand, looking forward towards another heart surgery is difficult as well. What if something goes wrong. I just don’t know what I would do without my precious baby girl. And, even if nothing goes wrong - anticipating what she will have to go through is also difficult. I don’t want to see her in pain. And, I don’t know how different or similar her recovery is going to be. Is she going to be on a ventilator for as long as she was before, is it going to take her voice away again? Is she going to have feeding problems again, or will it just be fine. How long will it be before we can hold her? Is she going to tolerate everything alright. Like my Dad said, it will be nice for her surgery to be a memory, instead of something that we are looking forward towards. ..

Finally, Primary called and gave us a surgery date. They wanted us to report to the hospital Monday, August 20th, for a chest x-ray, echo, and EKG, have a heart cath on Tuesday (yikes, I didn’t know she would have to have that) and then have the surgery on Thursday. Unfortunately, Thursday was also Cody’s first day of school, so for the first time ever, I wouldn’t be able to see him off and take pictures before school. What a bummer. And, we wouldn’t be around to try to keep him motivated. He was going to stay with his Papa and Uncle while we went off to Salt Lake. Grandma Tammy was coming with us. About a week after Carla’s surgery was scheduled the hospital called us back and moved her surgery date to Wednesday, the 22nd, instead of Thursday. That made more sense anyway. We pack our bags, cleaned our house and loaded up the van. It was finally time to take our daughter back to Salt Lake. We were feeling very optimistic and good about this next surgery. We knew that Carla would be doing so much better afterwards, and since she was already doing great, better would be pretty awesome. August 18th Carla, Bobby and I drove to Helena and spent the night at my folks’ house. Bobby and I had an annual house party/gig that we attended that evening and were home by midnight to rest for the trip. Carla spent the evening hanging out with her Grandparents. The 19th Tammy met us in the morning at my Dad’s house - Sue made us breakfast and we took off for Salt Lake. The drive went better than we could have ever hoped for. Carla got a little fussy about 10 minutes before we got to the Ronald McDonald House, but that was pretty terrific, considering it was a 9 hour drive for her. Monday, August 20th we reported to Primary Children’s Hospital for a chest x-ray, EKG, O2 readings, weighing and measuring. She weighed in at 12 pounds 15 ounces, her saturation levels were at 80% and she was just shy of 25 inches. The nurse made a comment about what a happy baby we have and that she was the best she had seen in a long time. Later a Cardiologist came to speak with us and told us that they are concerned with Carla’s heart squeeze and that if pressures don’t look all right during the heart cath, tomorrow, that they won’t be able to do the Glenn. I then asked the simple question "Well, what happens if we can’t do the Glenn." To which he responded "Heart Transplant." I swear, these cardiologists are so doom and gloom! My daughter doesn’t need a fricken heart transplant. So, he talked a little more and did his best, doom and gloom Cardiologist thing, but Carla wasn’t having any of it. She was hamming it up, smiling and being ridiculously cute. Even the Cardiologist had to melt a little bit. He let us know that they planned on doing an echo in the morning before the heart cath and sent us on our way. We then had to go up to the same day surgery part of the hospital and check in with them. We filled out paperwork and answered some questions. They told us to stop feeding Carla by midnight, and that we could give her Pedialite or water up until 6 a.m. That being said, we were expecting a hungry, crabby little Carla for the morning of the heart cath. That evening we gave Carla a bath and had a low key time in the room at the Ronald McDonald House. Bobby went and bought Pedialite and we took pictures and hung out with the Babers. I went to bed around 10:00 and Bobby and Tammy stayed up and fed the baby for the last time at 11:45. I got up in the middle of the night, or should I say early morning, and fed her Pedialite. We reported to same day surgery by 8:00, and Carla was scheduled for her heart cath at 10:00. We filled out paperwork and waited to be called. Upon being called, Carla was weighed and then they gave us this little baby hospital outfit to put her in. We thought it was really cute and had Mom take pictures of us with her. A nurse practitioner spoke with us about the procedure and told us that Carla was "the best baby" she had ever seen. She took us to another waiting room, where we held Carla and waited for them to come and get her. About 10 minutes before it was time for them to take her they came and gave her some medicine to make her sleepy. We then saw Bonnie, a nurse practitioner or doctor (I’m not sure which) who led us to where we needed to go for the heart cath. We had to hand our precious Carla over to some nurses, who she made sure to flash a gummy smile at. We were then given a beeper and sent on our way. We were to be beeped when they were finished with the heart cath. About five hours later we were starting to get a little nervous – what was taking them so long!? Finally, that beeper proved, a watch beeper does beep after all! We went back to the cath lab and were met by a new cardiologist who explained the cath procedure and showed us pictures/video of them putting dye or something into Carla’s heart/lung veins. He showed us that her pulmonary artery was a little thinner at one point and said that the surgeon may or may not fix that during the surgery. He also said that the pressures in her heart/lungs were somewhat high (not great) and that the surgeon would be looking at the heart cath results soon. We were then escorted to a room where Carla was going to spend the night. When we got to the room, Carla was already there sleeping. Dr. Kouretas stopped in after he looked at the heart cath results and said that the surgery was a go and answered a couple of questions for us. The nurses told us that Carla had to remain with her legs straight out for the next six hours and that hopefully she would sleep through most of those six hours. This would reduce the chance of bleeding and/or a blood clot. I had heard a horror story the last time we were in Salt Lake about a baby that had a heart cath and then a stroke, and went blind. I have been petrified of the procedure ever since.... So, as you can imagine, I was pretty freaked out about her remaining still. Carla did sleep most of the six hours, but woke up at one point and I was able to give her some Pedialite. She was very groggy and not feeling well at all. Bobby and I pretty much sat in her room watching her sleep. Later we were able to feed her a bottle, but again she had to be, as I called it- starved down, for surgery in the morning, so she couldn’t eat after 10 p.m and no Pedialite after 4a.m. Our poor little Bousky had a rough night, pulling on her oxygen cannula and crying in hunger and pain from the heart cath (they went up to her heart through the main vain on one inner thigh and an artery of her other inner thigh). The morning of surgery came and it was a rough morning - Carla probably cried more that morning than she had in her entire life! They came and took her to surgery a little after 8:00. I was glad they were going to be putting her to sleep soon, as I knew how uncomfortable she was. Soon after they came to get our sweet daughter Mom showed up - she got lost on her way to the room and had just missed seeing her grand baby off to surgery. We went to the Ronald McDonald house to shower, picked up some McDonalds and then back to the hospital. My Uncle Norm called and he, Donna and their grandchild, Forrest, met us in the waiting room and we all sat and waited to hear bits of news about how Carla’s surgery was going. After a period of time we got a phone call from surgery that they finally had her open. It took quite a long while because of scar tissue. A while later Bonnie came out and told us that Dr. K was working on widening her pulmonary artery and that after that he would start the Glenn procedure. At about 1:00 we were told that the doctor was finished operating and they had taken her off of the heart/lung machine. We celebrated and made phone calls - about 15 minutes later Bonnie was back - she said the doctor didn’t like Carla’s oxygen saturation levels and so went back to work more on her pulmonary artery. Because of this, they had to re-cool Carla’s temperature and put her back on the heart/lung bypass machine. Around 3:00 Bonnie came back and told us that the surgery was done and that Dr. Kouretas would be in to talk to us in a while. About half an hour or 45 minutes later Dr. K. came and spoke with us about the surgery. He was looking absolutely drained and told us that it had been harder than expected, but that she was being taken to the PICU and that we could see her in a little while. We went in shifts to see the baby and were careful not to get in the way. Seeing her back in post-op condition was hard. She was on the ventilator and they told us that because she was on the heart/lung machine twice, she would be on the ventilator for longer than if she would have just had the Glenn, because post-Glenn kids are usually off the ventilator in 24 hours. We went and had dinner and then were back to the hospital to meet the night nurse. When we came back in the morning we were greeted by a nurse who I have to say is a person that I have detested more in my life than I think anyone EVER. His name was Kelly S. and he had a bad disposition and nothing to say but negativity. We asked how Carla’s night was and he spouted off that she had a terrible night and that she wouldn’t sleep and her O2 saturation levels were terrible. They were trying a new drug on her to see if that helped. All day long we rotated in to sit with Carla. Her oxygen saturation levels were in the mid 60s and low 70s. When Kelly went to lunch he told the shift nurse that he hadn’t seen "his" levels out of the 60s all day. Well, first of all, MY BABY IS A GIRL!!! And second of all, HER levels had been out of the 60s, but he was choosing to focus on the negative, instead of anything positive! I talked to the shift nurse and asked if us parents have any say so about our nurses. He said that we did and I told him that I didn’t want Kelly taking care of my baby. That he seemed very uncaring, insensitive, negative and that he had referred to my daughter as a boy. The shift nurse said that he would write in Carla’s chart that Kelly wasn’t to be her nurse again. THANK THE LORD! The thing is, when you are feeling so out of control of a situation - your daughter is literally fighting for her life and you can’t make it better for her, the last thing a parent should have to worry about is that the nurse won’t be kind hearted to your most precious possession. My children are my most important prize possessions. My first priority through and through. I have always felt that way about Cody and things certainly wouldn’t be any different with Carla. I consider myself a pretty easy going person, but you hurt either of my babies and the claws are coming out! The evening shift change came and we went to dinner (they kick you out of the PICU during shift change). When we came back I was much happier with the nurse that would be taking care of Carla for the evening. That afternoon I had printed pictures of Carla and put them all over her crib. I wanted the nurses to remember SHE’S NOT A BED NUMBER, SHE’S A BABY! And, I also wanted them to remember that SHE is a girl. The next few days brought so many comments about what a beautiful, happy baby we have - that’s more like it! Also, the pictures were good for me, because I could look up and remember how terrific she was doing before and that she would be that well again soon. The next day we had a nurse named Erin, who took care of Carla through most of her recovery the last time we were here. All day long Erin worked on weaning Carla’s oxygen down. It went from 80% that morning to 60% by the evening. Carla was doing a lot better but was having a hard time sleeping, because it was SO LOUD in that PICU! She would fall asleep and then something loud would happen and she would startle, wake up, cry and then her saturation levels would drop. We asked Erin for ear plugs, so she cut some down and placed them in Carla’s ears. This helped considerably. Tammy talked to one of the Nurse Practitioners and told her how hard it had been for Carla to rest peacefully because of all the noise, and her sensitivity to sound. That evening when we came back after dinner they had put Carla in one of the private (quite) rooms. We were told that they were going to continue to wean the oxygen and that at 4:00 in the morning they were going to take her of the nitricoxide and see what happens. The Nitric was one of the reasons she was still on the vent, so that was a good sign. The next day when we got to the hospital we had a nurse named Kim, who proceeded to tell us that when Carla was taken off the Nitric, her oxygen levels plummeted. They had her turned all the way up again and she had to start weaning again from scratch! Pretty big bummer. Kim told us that we were going to leave the Nitric levels alone but work on weaning the oxygen again. We really liked Kim, she was very methodical, friendly, caring and optimistic. She suctioned Carla out every hour, repositioned her and drew blood gasses. Every time the blood gasses came back good, she was able to turn her oxygen down a little bit. By the end of the day her oxygen was weaned from 70% to 45%. and her saturation levels were consistently in the mid to high 70s. So, things were starting to look good for Carla and we were planning on some really good days to follow. We were hoping we would have Kim for at least another day, but she had a day off and then when she came back would be the charge nurse, so wouldn’t be able to take care of Carla. Sunday, August 26th, we came to see Carla and she had a great big pink bow on her head - the night nurse had been making her pretty. The daytime nurse was working on weaning the nitricoxide again, her oxygen was down to 40%, and the doctors took the draining hoses out of her chest and belly and removed her catheter. So, all in all it was a good day. Monday, much to my dismay, we arrived at Carla’s room to find the dreaded Kelly S. taking care of her. He had an intern with him and was telling him what he was doing, etc. They were taking the IV out of Carla’s neck, which just so happened to be secured to her neck with tape. So, I stood there as this total asshole ripped the tape off of my daughter’s neck hair! He was all "it’s not my fault, I didn’t put the tape in your hair - RIP" What broke my heart was watching my poor sweet daughter, who has been through way more than a person should have to go through, scrunching her little eyes shut and tears welling up in them at the same time. I said "they have adhesive remover you could use!" At which point I just about had a nervous breakdown and had to leave the room, balling. My poor baby, how could he be so cruel as to not use the adhesive remover, and to just rip her hair out like that! I burst into the waiting room balling - and scared the holy living crap out of Mom. I sent her in to the baby and went to parent resources to update the blog. I updated, making sure to focus on the positive, and then cried and balled to the gal who works in parent resources. She told me to, again, talk to the charge nurse about not having Kelly be Carla’s nurse again. After I was done having my tiny nervous breakdown I went back to Carla’s room. Bobby told me that her artery line had collapsed, and so they had to take that line out of her arm while I was gone. Also, they were going to do a trial run of taking her off the ventilator. She got very upset in the middle of the trial run, and so her saturation levels went to hell. When the doctor came in he had to make the decision of what to do and I told him that I felt she would do better without the vent - and to take it off anyway. Having it there was so upsetting to Carla that it was counterproductive. He warned me that if they take her off the vent and she does poorly, that they may have to put it back on. But, I still wanted it off. I Knew that without it she would be so much better - and she was. Her saturation levels were soon in the 80s, way better than where they were on the vent! Kelly went to lunch and I spoke with the charge nurse about him and asked if we could get him taken off of Carla today. She said there weren’t enough heart nurses, that she wished she would have known we didn’t want him when she made the schedule (apparently the other charge nurse forgot to put it in her file) and that basically we had to deal with him for the day. So, I bit my tongue and spent time with my daughter. While Kelly was at lunch the nurse who was with her asked us if we wanted to hold Carla! Figures the jerk didn’t even tell us that we could hold her now that she didn’t have the ventilator and artery line anymore. So, I held her, and Bobby held her, Sue held her, Tammy held her, and my Dad held her. It was a terrific rest of the day. Tuesday, the 28th, Carla was back in the main part of the PICU. Unfortunately there was a post-op heart baby that needed the room, and since Carla was doing better, they moved her to the main section of the PICU and started talking about her moving upstairs. Oh, the thought of upstairs...how I longed to be out of the ridiculously loud and uncomfortable PICU! Because Carla was doing better, my Dad and Sue left for California, to see my Aunty Jeannette and family. The plan was to visit in CA and then drive up the coast and go home after a couple of days. I gave Carla her first bottle this afternoon, but she wasn’t feeding as well as we hoped, so we had to put the feeding tube back in to supplement her food intake. The doctors took Carla off of all of the medicine that was keeping her in the PICU, but wanted to monitor her for 24 hours before moving her upstairs. Wednesday, the 29th, our little patootie wasn’t eating any better and Bonnie noticed a redness around her incision that was of concern. She ordered a blood work up and discovered a high white cell count, which indicated infection. Carla had been having fevers off and on, but whenever they drew blood, nothing came up, so they weren’t worried about them before. Because of the high white cell count, the doctors started heavy duty antibiotics immediately. That evening after dinner we came back and found an absolutely happy little baby! She was smiling, being cute, and generally acting like herself. Boy, those antibiotics must be working - this was the first time since her surgery that Carla was actually acting like Carla. Thank goodness - she was getting better! Thursday the doctors decided that they needed to go in and clean out Carla’s chest with an antibacterial spray. So, they quit feeding her in the morning and in the late afternoon she went back to surgery. Dr. Koretaus re-opened her incision, flushed out her insides, scraped her sternum, replaced the wires holding her chest shut, and then closed her back up. She was back on the ventilator for the evening. We got a little freaked out after the surgery, because the nurse came out and told us that Dr. K. would be out to talk to us shortly. A little more than an hour went by and still no doctor! My mind was starting to play tricks on me, so Bobby and I finally decided to go back to the PICU and see if she was back in her bed-spot. She was. I don’t know if the doctor forgot to come and talk with us or what, but we saw him and he spoke with us about the infection. He was very glad they went in and cleaned her out. The infection had gotten onto the bone and was worse than he thought it would be. He talked about sending us home with a PICC line and when I asked if a PICC line would last for 6 weeks, he started thinking they should do a broviac line - which would require another surgery in itself! Good grief... Friday, August 31st - Carla was weaned off the ventilator again and my Dad and Sue got back from California - as soon as they heard about Carla’s infection they left CA and headed straight back for Salt Lake to be with us and Carla. This was a day of focus for Carla. She was staring intently at the ventilation machine controls and then would close her eyes, scrunch her forehead, open her eyes again and stare at the ventilator machine some more. And, every time the oxygen was turned down, her saturation levels actually went up! shortly she was off the vent again! Carla was a much happier baby - and we were much happier as well! Saturday was a day of recovery, with talk of moving her to the third floor and Sunday they finally actually moved her! Unfortunately, Bobby, and my folks had to leave Sunday morning, to go back to work. After Carla was moved to her own quiet room on the third floor, she slept for nearly 24 hours...it was just so quiet and relaxing and that PICU was so damn loud! It was totally awesome to be able to spend the night with Carla and be with her ALL the time again. I love the 3rd floor. Tammy and I again took turns spending the night at the hospital and were working into a nice routine when suddenly the doctors decided they were going to let us go home! Thank the Lord! The drive home was uneventful until we got to Helena. At this point we were just about completely out of oxygen. I have a grandmother on oxygen though, so she saved the day by loaning us a small can to make it home with. I met up with a gal from Sprectum, home health when we got home, and she showed me how to prepare and administer Carla’s antibiotic. We were on a 7a.m, 3p.m. and 11p.m. schedule for the time being. Getting used to the PICC line took a little time, but after a couple of times, giving the antibiotic became like second nature. Isn’t it amazing what a person can do when the HAVE to. Carla was having a hard time feeding and kept her feeding tube until September 14th. She kept her oxygen until September 23rd. On September 23rd, Carla fell asleep from about 6:30 until around 7:45. When she woke up I noticed that her oxygen was up on the top of her nose, instead of in her nose. This is a common occurrence, so I just put the oxygen back in her nose. What was uncommon was how pink Carla looked. I took an oxygen reading and she was at 93%! Whoa, that’s high, so I took the oxygen off of her and monitored her levels without it. That evening she stayed in the upper 80s, even bouncing into the lower 90s. In the morning she was 84%! She has been off the oxygen ever since and is looking good and doing spectacularly! October 10th is her last day of antibiotics, so she should be getting the PICC line out on the 11th of October. I can’t wait! I’m sure she can’t wait even more!

A year has passed and Carla is doing terrific. Her O2 levels hang in the low to mid 80s. Dr. Ruggerie is going to send her information to SLC at the beginning of April and so I'm assuming we will be doing the Fontan around the end of May, 2009.

Something I wrote:
We wait in sweet anticipation for your arrival. Our baby girl - I feel you grow inside me and wonder what you will be like -how you will look, how you will act, what will you do with your life? Will you be happy, will you be kind, will you like sports, like your big brother? Or will you be a girly girl like your Grandma? Will you be funny like your Dad or silly like your Mom? Upon your arrival we find that you are a perfect blend. Daddy’s lips and Mommy mouth. Daddy’s eye’s and Mommy’s face. So beautiful and sweet - now we feel our life is complete. But wait, they tell us now there’s something wrong....your heart is too small, it must be operated on. They’ve taken you to the NICU and left me alone. My thoughts are all clustered I don’t know what’s going on. Dear Lord, how can this be? Haven’t I had enough misery? You took my Mom, so beautiful and young, now you are going to take my little one? Let us feel sheer joy for a day, then take it away– What did we do to you anyway? We try to be good, we try to be kind. We do our best to live life and toe the line. Our most beautiful day followed up by true horror. I sit here silent but screaming inside - why my child, why God? WHY? How can this be? What did I do? I tried to do everything right...I took such care while you were with me. They tell us we can chose to let you go, you’re chances are slim, they may not be able to operate anyway - brain damage, maybe, death during surgery... could very well be...they call it compassion care, but we say NO – our daughter gets a chance and we will do whatever it takes not to let her go! Our sweet baby all alone to another hospital she goes... So helpless and lonely, I feel it too – I miss you so much I don’t know what to do. I ache inside in a way never known. How could someone so new leave such a huge hole? Off to Salt Lake City we drive, terrified but hopeful that you will thrive. A miracle you are, the surgery went well. In a months time to come, you finally come home. A feeding tube, meds, and oxygen too. A complicated baby you have surely become! But you are smart, and you are beautiful and we see a fire in your eyes. This heart condition will not lick you, no, you will NOT DIE! As the months progress you get stronger and stronger. Rolling over so soon and weight you are gaining. The doctors are still cautious but we know you are thriving. Back to Salt Lake your second surgery is due, it is harder this time and a staph infection gets you. True to form you’re triumphant and come home alive. Now a years gone by and you continue to thrive. My sweet daughter so lovely, my sweet daughter we love you. Can’t wait to see you at one hundred and two. A new heart you may need, way off in the future, but until then you will survive with too small of a ticker. Love, Mom

2/20/12

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1/30/12

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Blog Archive

Carla's Transplant Donation Fund

Family Picture, December 2010

Carla, July 2011

Cody's Senior Picture

Bobby's Band

HLHS Babies

John 9: 1-3

I Will Make Your Heart Whole Again

Our Kids, December 2010

A Beautiful Poem

What is Hypoplastic Left Heart Syndrome?

Treatment

The Norwood

The Glenn

The Fontan

Once Upon a Dream, Carla's Make A Wish Vacation

Make A Wish Flip Video Medley

Cody's 18th Birthday Video

Carla Needs a New Heart

My Bobby :)

The Fontan

Carla's 2nd Birthday

Carla's 1st Birthday

The Glenn

The Norwood

Carla's Birthday

Carla's Story