"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Sunday, May 31, 2009

Sunday Snapshot!

Carly was thrilled today to find herself a caterpillar. She and Paul put grass in an old dog food dish making a nice home, for a short time! Our little girl LOVES, caterpillars, frogs, worms.....you get the picture?!
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Saturday, May 30, 2009

Carly's story. Part 4

Fast forward to November 2003. Carly had a routine cardiology appointment. She went in for an Echo, EKG and a checkup. We really didn’t expect to hear these words coming out of the doctor, “We found a problem today, and we really need to schedule Carly for a catheterization.” I was completely unprepared for those words. As seems to be the case with me regarding Carly.

After talking with the doctor for quite a while. I finally understood. After anyone has any kind of open-heart surgery, this very thing could happen. Aortic stenosis. The chances are quite slim, but the chance is always there. Per the results of the Echo, they knew something was causing this stenosis, but they just couldn’t tell what. That’s why she needed the cath.

After her heart cath., was done and we had the results, it was time to decide just what to do. Surgery was a must. A membrane had formed causing the aortic stenosis. The membrane had to be removed. This can happen, as I said above, to anyone who has had heart surgery. The surgeon promised we would NOT have a repeat of the first surgery. Of course, I still worried. It didn’t make the surgery any easier on me that’s for sure.

Carly went to surgery on June 21, 2004. She was in surgery for about 4 hours from start to finish. The surgeon came out to talk with us. He told us that he had removed the membrane and all looked really well. We were told we could see her in a couple of hours. After finally getting in to see her. We found that she was already of the vent. Little Miss Carly had extubated herself just as they got her into ICU. Surprisingly, she was doing exceptionally well. So, they let her be.

Less than 24 hours after her surgery, we were out of ICU. On the morning of June 25, we were discharged. I couldn’t believe it. Carly blew my mind. Less than 36 hours after having open-heart surgery, she was walking around and even playing in the playroom. All while still having a chest tube sticking out of her side along with an IV in the top her foot! This kid just blew my mind during that hospital stay.

Six weeks after surgery we headed back to the cardiologist. Carly had an Echo, EKG and of course a check up. She looked great. We didn’t need to come back for six months. The doc said that we were safe to go on a family vacation to the Smokey Mountains. We were on cloud nine. We were excited! Excited for Carly to be healthy and thriving. Excited to be going on a much-needed family vacation. Excited to be planning for Carly to start preschool in the fall. Being a typical, happy, healthy family. I guess would best describe the way we felt.

We had a great time on vacation. We were gone 10 days. Did tons of things. Spent time in the Mountains – which Paul LOVED! Took Carly swimming in the Hotel pool every night. It was great! We even met up with a friend of Brad’s who had moved to TN a few years earlier.

The day we headed home, Carly woke up in the morning with a yucky nose. She had a slight temp and was feeling really crummy. She got some Tylenol in her and perked up a bit. That night on the road, heading home was miserable. Carly didn’t sleep more than 2 hours at a stretch. Needless to say, it was a looooong ride home from TN.

To be continued…

Thursday, May 28, 2009

Carly's story. Part 3

After what seemed like an eternity. The Chaplain came in and spoke with Paul and I. I can’t really recall all he said to us. I do remember that he asked if we wanted him to go pray over Carly. At her bedside. We of course said yes.

The doctor came in next with a couple of pieces of paper in her hand. She sat down and began to tell us what had happened. Also, what was going to happen by daybreak if we did not sign a consent form for a life saving machine called ECMO. She of course ran down the list of what could happen to Carly if we went ahead with ECMO. First - Carly could have stroke, she could die from ECMO itself and it opened her up for numerous infections. As the doctor went on, we learned that Carly had had a pulmonary hemorrhage and was in grave condition. Carly would die by daybreak if we did not move fast and place her on this machine that we had never heard of. I recall asking the doctor what she would do if this were her child. Her response was, “I can’t honestly answer that, because I have no children”. Paul and I talked for only moments. We told the doctor we wanted Carly to live. We signed the forms of consent and the doctor ran (and I mean ran) down the hall. We could here her saying, “mom and dad want her to live, hook her up now”.

My parents finally arrived at the hospital around 3:30a.m. Paul’s mom arrived shortly after. We prayed, cried and prayed some more. Soon my brother and sister in-law arrived with Ashleigh and Brad. We waited and waited. Finally, we were allowed to see Carly. Believe me, no one could have prepared me for what I saw. Here was our tiny little baby, all 8lbs 8oz of her, laying on a gurney with over 21 tubes and wires coming out of her little body. Her fingers and toe’s were still blue. They had been black. She actually flat lined just as they were hooking the ECMO up.

ECMO is a machine that is used for various illnesses. Carly’s heart and lungs were hooked up to this machine. It’s a machine that is basically a bypass machine. Its design is to give major organs a break during a last chance at life type deal. Carly’s heart was allowed to beat every other beat … to make sure it got stronger. However, the ECMO machine took over her lungs. Carly would remain on ECMO for 3 ½ days. We were warned that she might not come off the machine alive. However, this was her only chance.

Her lungs remained very sick. She was soon started on the wonder drug Viagra. Yes, that’s right. Viagra. She was the very first child to ever go home on this drug. It was a wonderful drug for the healing of her little lungs. Well, that and numerous other drugs. She remained on Viagra for over a year until they began to wean her off of it.

Obviously, Carly made it off ECMO. She went on to stay in ICU for a total of 19 days. Much to the doctor’s surprise she went to the main floor. Most doctors, including her heart surgeon expected Carly to stay in ICU for up to 5 months. Glad they hadn’t told me that prior to surgery.

Carly developed a severe blood infection after we had been on the main floor for about 3 days. She was placed on heavy doses of antibiotics, a 10-day course. We were told we could be discharged and go home on an IV. My response was, “NO WAY”. So, we stayed. Finally being discharged on day 31.

Things continued to go well for Carly once we got home. She thrived. Started to make up for lost time in the milestone department. We were thrilled. Of course we thought her heart issues were behind us. Boy, were we ever wrong about that?!

To be continued…

Results are in...

Better looking numbers for Miss Carly today. Yay!! Her platelets are coming up, slowly, but that's ok. Today they were at 87,000. Last week they were 76,000 and the week before they were 58,000. That's a very good indication that there is no leukemia lurking around. If there were, her platelets wouldn't be going up at all. Oh, and no blasts at all have been present in her blood work for 4 1/2 years.

We will head back to Ann Arbor next week for one last check before the doctor turns us loose for 6 months. They are all confident that this is just Carly being Carly. She does her own thing, at her own pace all the time. Really, this shouldn't surprise any of us. However, that word leukemia will remain in back of my head for many years to come.

So, this afternoon I'm much more at ease. Still praying, but am much more comfortable with all this blood work.

P.S. Still trying to learn the ropes on the whole blogging thing. Have yet to figure out how to add a link, without the entire link showing in my post. Also, I need to figure out how the heck to get rid of the green at the bottom of each post I'd kind of like it to match the rest of my blog. In time. In time!

Off we go. Again.

We're heading to Ann Arbor in just a few minutes. Carly is due again today for labs. Please say a prayer for her. We really want, and I need these counts, to look even better than last week. I'm tired. Tired of not being able to sleep at night. I'm tired of watching her every single bruise and making sure they heal...which they do. Her doctor told me that is actually a good indication that the platelets are doing their thing. I'm tired of feeling sick to my stomach. I'm tired of the word leukemia. Although, I still hold tight to the fact that she is showing no signs or symptoms to leukemia. She is full of energy, happy, she eats well and seemingly healthy and she rarely sleeps! Nonetheless, this is very nerve racking and very scary. So, off we go. Pray!

We do have care page @ www.carepages.com/carlyscarepage100
you can check it out, see some more pictures and read up on the last 4 1/2 years of Carly's life.

I will post part 3 of Carly's story later today.

Wednesday, May 27, 2009

Carly's story. Part 2

5:30 a.m., April 5, 2002 we headed for Ann Arbor. Carly was the first case of the day for her heart surgeon. The surgery was to start at 7 a.m. It was a very scary day. We filled the pre-op waiting room with our family of 5 and also my brother and sister in-law along with my parents and Paul’s mom. We sat and tried to chat with each other, but the mood was quite somber. Finally, we were called. The nurses allowed our whole group to walk that terrible walk back to surgery. Along the walk, we met Carly’s surgeon in the hall. He stopped and talked briefly to us and told us he was still very optimistic. This surgeon is one classy man. Here it was, 6:45 a.m. and he was walking the halls in a three-piece suit.

One of the hardest things I have ever done in my life was hand my tiny three-month-old baby over to the anesthesiologist and his nurse. There wasn’t a dry eye around as we told Carly that we loved her and kissed her numerous times. As I handed my daughter over, my knees would buckle, yet again. Paul and my mom caught me before hitting the floor. I was scared to death that I had just said goodbye to my daughter forever. We had no idea what the outcome of the surgery would hold. We prayed, hard.

We then headed to the pediatric surgical waiting room. We would be getting updates throughout the day. Surgery was supposed to last 5-6 hrs. Our first update came and was very promising. The second update was not looking so good. The surgical nurse said they were having a hard time constructing the mitral valve. The surgeon was concerned that there wasn’t going to be enough tissue. The fear was, they would have to close her up. The nurse said she would be back in an hour or so to give us another update.

So, we waited. For what seemed like hours. It wasn’t, but it sure did feel that way at the time. I caught a glimpse of the surgeon literally bouncing down the hallway and smiling ear to ear. I knew right then we had success!! He told us it was concerning, but that he was finally able to construct the valve and it was working properly! I jumped from the seat I was in and hugged this doctor so tight. I thanked him over and over. He did however tell us that the next 72 hours were very critical for Carly. Her lungs were very sick from her heart defect. They needed some major healing.

Around 11pm the nurses talked Paul and I into heading to our room at the Med Inn. It’s a hotel for family that is attached to UofM and Mott’s Children’s Hospital. We went, but I wasn’t really for it. I wanted to stay by Carly’s bedside. We got up to our room and Paul went to sleep quickly. I finally drifted off sometime around 12:30.

At 1:30 our phone rang in our room. We both knew what that meant. Something was wrong with Carly. Paul answered and was told that we needed to get to the ICU quickly. We dressed and headed out. Neither of us really remember going through the 3 long corridors that led to the ICU. We were running, we do remember that. Nothing could have prepared us for what we saw as we burst through those ICU doors. One nurse straddled over the gurney massaging Carly’s heart. Nurses running all over grabbing this and that per 6 different doctor’s orders. We were quickly ushered into a tiny consult room and told a doctor would be shortly and for us to call family. We were also told the Chaplain would be in soon.

To be continued…

Tuesday, May 26, 2009

Carly's story. Part 1

January 2, 2002 our lives crumbled with these words, “I’m sorry, but your baby is showing some characteristics of Down syndrome”. Yep, about 3 hours after our beautiful baby was born, the delivery doctor came into our room and sat at the foot of my bed. He then placed his hand on my leg and uttered those gut-wrenching words. Those words that no new mother ever imagines she will hear. Paul, (my husband) got into an argument with the doctor. Paul flat out told him, “You’re crazy”.

Within a few hours a Geneticist was called to our room. She proceeded to check our baby out. She told us that she didn’t really see anything alarming. Her comment of a low birth weight (5lbs 11oz) and Carly’s toes didn’t really make much sense to me then. Now it does. Anyway, I told the Genetics doc to get the tests ordered and get it over with.

It was about 10 agonizing days waiting at home. Then, a phone call came. The blood results were in. Yes, I was told over the telephone. Our beautiful little girl was indeed a child born with Down syndrome or as some say, T-21. Our world was in a tailspin. Spiraling out of control. I couldn’t eat, sleep, or shower. I was a wreck. Thank God that only lasted about a week. I then jumped into mommy mode.

When Carly was 3 weeks old, we had all pretty much come to terms with the diagnosis of Down syndrome. Then, we were sent to UofM for a routine ECHO of her heart. The doctor’s had already assured us her heart was fine, but they wanted a baseline. Off we went. When we were told of Carly’s severe heart defect, my knees went out from under me. It was something none of us were expecting to hear. For us, that was a harder diagnosis to hear than Down syndrome.

A few weeks out from that appointment, we met with a heart surgeon. He informed us that Carly would die as an infant if they couldn’t fix her heart. She was a complex case and not all the cardio doc’s were on board with what the surgeon thought he could accomplish. It was in our hands whether or not she had the surgery. Of course, by this time our love for her had grown more than we ever thought it could have. Yes, we wanted the surgery. We wanted to give her a chance to live.

As I said, Carly’s heart defect was quite complex. She had two very large holes in her heart. No mitral valve. And her left ventricle was almost non-existent, but it was there. (It was expected to grow, if her heart were functioning properly) The surgeon had a plan and told us what he wanted to do. First, the holes were fixable. Second, he would construct a mitral valve by using Carly’s own tissue. Using part of the tricuspid valve in the process. His hopes were; the mitral valve would function with little to moderate leakage. If so, her heart would be repaired and considered a success. If the surgeon couldn’t get enough tissue, then they would have to close her up and let her be. Unfixed.

To be continued….

Oh Brother

I've been absent this weekend. Just out enjoying the family and good weather.
All is well and a post is coming soon! Now, if I could just figure out how to put the finishing touches on this blog of mine! Any tips on how to add a 'facelift' on the top of the blog?? What I have done so far isn't working...

Off to bed for now. I've had enough.

Thursday, May 21, 2009

Good News!

Carly's platelet's came up. Yay!! Not a huge amount, but the doctor was happy and so were we. Today, her platelet's were 76,000. According to the doctor, that's a nice jump/start. It's also encouraging that there was and increase. Some of her other counts went down a tad, but not much. We have to take her back in a week for another check. The doctor said she just wasn't ready to turn us loose for another 6months. So, I will worry for another week..ugh!

While we were at clinic today, the doctor pulled Carly's lab work from 9/06 thru today. She believes this is a trend with Carly. Carly tends to be just at the normal range or a tad under when it comes to her white blood count. Her platelets have dipped down a few other times. Each time was just after an illness. So, the doctor believes that this is likely just Carly and her "make up" with her immune system. That her bone marrow really takes a direct hit when she is sick. The thought of checking her bone marrow now, isn't really being talked much about. Unless, we see some weird stuff going on and/or her platelets take another hit.

So, we pray. Pray for her platelets to continue to rise. Pray for her blood work to remain stable/normal. Also, that she remains healthy so we can be sure to get good, accurate lab results.

I'm very happy today is behind us. However, I'm a mom and I worry and I will continue to worry. I HATE, HATE, HATE the word cancer. It's such an ugly word. I hate the sound of it. I hate how scary it is. I hate the effects of it. I hate the fact that so many innocent children have to suffer through this horrible, horrible yucky cancer. It just plain sucks!

Wednesday, May 20, 2009

Tuesday, May 19, 2009

To blog or not to blog??

So, whoever told me that setting up a blog was easy peasy (is that even a word?). It's taken me 2 days to figure things out. Still not sure I have figured much out, but this is a start. Please bare with me while I learn the ropes! Which leaves me to this question, "To blog or not to blog"? Guess we'll see how it goes. Only time will tell.

Monday, May 18, 2009

Sweet Carly

I guess my first post will be about our sweet little Carly. Much to our surprise, she was born with Down syndrome. Although I wouldn't trade Carly for the world. I would, if I could, take away all of her health issues. Although, she does seem to march through it all with flying colors.
After just saying I would take away all of her health issues, I realize that I would and do say the same exact thing with my other two kids. So, all in all NO, I wouldn't trade one darn thing about Carly. She is who she is and we LOVE her to pieces.
Last week was a rough week. Carly had some sort of viral bug causing quite a bit of diarrhea for 10 days. . . ugh! We also had to go to the Oncologist and Cardiologist on the 14th. Carly's platelet count was kind of low. Not something you want to see after battling leukemia. However, all of her other blood counts were great. Her blood did show that she had a viral bug present. The doc thinks that maybe why the lower platelet count surfaced. We pray that's why.
On the 21st Carly will go back for another CBC (complete blood count) to check how her platelets look. They really need to show some recovery. If they do, we will chalk it up to the nasty viral bug she had. If they don't, then we will be chatting with the doctor on just what needs to happen next. Please pray for Carly and our family. I really don't want to think about what may happen if her platelets don't recover.