Wednesday, April 1, 2009

Moogie's (Possible) Heart Story (WARNING) this is a long one!

This child has always been a crazy ball of wonder in our lives. She is our middle child and is loved from both ends of the family. She is a strong willed little ball of terror at times. I admire her drive and her strength. When she was a baby she cried all the time. She would only sleep for her Dad, her big sister Pooker or her Mom. She didn't sleep long once in bed either. This little one was so fussy, always tired and never slept. She had eczema very badly and we thought that her skin condition just made her crabby. Little did we know that there was a much deeper issue.

Fast forward a few years and here we were as a family in Houston. We had eight beautiful children. We had lived in Houston for about 3 years so we had many friends. We were very involved at church, in the groups and even in our neighborhood. We finally had money saved in the bank, that was a huge deal considering we married so young and started our family right away. We were doing well and happy about it.
We had just helped with a huge vacation bible school and it had gone wonderfully. I decided that I needed to be "a good mom" and take my kiddos in for routine check ups. It had been along time. Usually we slack on that and only take them in when they are sick. This is not a decision on our part to avoid modern medicine but just the logistics of being a very busy family. They would only let me schedule them two at a time. When I questioned that they said it was because if someone goes wrong they need mom to be able to care for the child. I was so naive and believed that nothing could ever go wrong. I soon learned why that was a very good rule.Moogie was 6 now and we had started school with her. It was very hard for her ton concentrate for any length of time on anything. I wanted to ask the doctor about her possible needed medication for attention problems. Sugar's visit had finished and we started Moogie's. Sugar just sat as the visit began. I look back on it now and realize just how brave she was that day. The doctor heard a murmur when he listened to her heart. 1 in 10 people have a mummer and most are not an issue. To be safe he asked questions, did a chest x-ray and and EKG. Poor Sugar had my phone when dad called. "Why is it taking so long", he asked her. "I don't know", she replied, "they think there is something wrong with Moogie's heart!" (6-24-05)

The doctor told Moggie that her heart sings. She was very happy to hear that. I was worried. The doctor asked what other doctors had said. I told him that no one had ever heard it before. He wondered why out loud and I told him about how crabby she had always been. She had cried through most doctors visits and had never sat still long enough for anyone to listen to her heart. She had way too much energy and was a regular ball of fire. The doctor heard the important things form my rambling and ordered another test to be done later. "Just to be sure!" Jason and I did such a bad job of making that a normal week. Moogie played us like a fiddle also. We tried to make her do her chores and she would laugh and grab at her heart. I still laugh at that. Nothing stopped her. Nothing ever did and nothing ever would. She was pale all the time but had good color. It was just her skin type. She wasn't sickly or was she. I was so confused. I had no idea what to think. I was just worried and tried to leave it in God's hands.

The test that was ordered became known as the "jelly on the belly" test and then later the "jelly belly test". Little heart babies know this test well. At the echo cardiogram we could tell that the technician saw something. She called a colleague in to check her work. The only comment they made was that they saw a crab. To this day we have no idea what they meant. We think they were just using the word crab so as not to upset us. Moogie sat so still and was such a good patient. I was so proud of her kindness to all of these strangers. She was kind of rough with her siblings so I was a tad surprised as well. (6-28-05)

"You know mom I can't do that job because there is a CRAB in my heart!" she would tell us but then do her chores. Her dad wanted her to sit and rest all the time and I wasn't about to admit there was anything wrong. I was making her do more than before and he was letting her off the hook. Waiting in a situation like this is the hardest thing.

Then our primary physician called and was referring her case onto a pediatric cardiologist. There was a clear abnormality present. Moogie was not showing any symptoms but it was a very serious condition. The doctor told me what it was and I looked it up. I was reading autopsy reports to get information. It was extremely deadly. I didn't dwell on the details too much until we met with this new doctor. I needed a game plan and felt lost without it. (6-29-05)

Then met with this special doctor. She ran many of the same tests and thought it all looked good. Before she saw the echo she was convinced that Moogie was fine. They must have seen a shadow on the film. Moogie was doing cartwheels while we waited for the test to show up. This doctor told us how rare the condition was by pointing out that she had only seen it 2 other times in her 15 years and that both of the those patients were on deaths door. We were confidant that this had just been a test of our trust in God and that we would be leaving that office soon knowing that Moogie had a singing heart. (7-1-05)

That was not to be the case. Moogie did in fact have this very very rare condition. Only seen once a year in the medical field and the reports were so bad. 95% mortality in infancy and 75% cases were diagnosed after death as the cause. This might be a silent killer for her later in life. The only fix was open heart surgery. The condition itself is called cor triatriatum sinister. Her heart had three atria on the left side. It is a congenital defect in which fibromuscuilar membranes have divided the left atrium into two chambers. It had been a part of her from the very beginning. The condition was a part of her as her heart was formed.

The research all led us to surgery to remove the extra tissue. The good news was that once this procedure was done she would be healed. It is a correctable condition. Our hope is that she will not be refused insurance when she gets older. She would need a few follow ups but if all went well she would be good to go after the procedure. Why would you take a healthy child into surgery like that. This was something that J and I had to weigh and pray about. We later found out that the surgeons and others were having the same debate.

We looked back and tried to see if her life had been effected by the condition. She had always been very crabby. She never seamed to get enough sleep. We were told that this condition could cause her enough discomfort that she might not have ever had a good nights rest. This was hard to tell considering that she wouldn't know the difference. The correction might allow her to sleep and grow and feel the way she should. We weighted that with the risk. We came to the conclusion that we were much better off taking a healthy child into open heart surgery than a child with a weakened heart. Her good physical condition increased her odds of a speedy recovery.

It seamed like we waited for ever to hear from the surgeons. We later found out that Moogie's case was being studied by several specialist. They wanted to record the surgery as a teaching tool. Her case was used as a teaching tool. The tests alone were eating up our savings and when we thought about the cost of surgery (even with great insurance) we panicked. We only found comfort and peace when we would decide to let God make the decision for us. We trust that he would make it clear.

It was a hard summer. We never knew if we should be active or not. Moogie wanted to ride a horse and play soccer. Her dad wanted to lock her inside the house to protect her. I felt alone and lost. J and I spent much time in front of the tabernacle. I started to keep Moogie home from parties so that she wouldn't get sick. I was now scared that a common cold would be the death of us. What a long month that July was. (7-05)

The beginning of August brought a great idea to our children. A friend had read a story about a family that made a special book for their sister that needed open heart surgery. The book was filled with get well wishes, painting, prayers, saint pictures and little games. The idea was that this book would entertain the child after surgery when they needed to be still. The kiddos went about collecting these pages from everyone secretly with the idea to surprise her before surgery. They wanted to give her something to let her know that she was being loved and cared for. I am still in shock over the response that they received. We got pages from family and friends from all over the country. Strangers sent gifts for her book with the promise of prayers. This really helped the older children. It gave them something to do to help the situation. (8-3-05)
We received letters saying that we needed to have Moogie cleared by the dentist. We didn't have one here in Houston. How bad was that! We then decided to fill the month of August by distracting ourselves with dental visits. Moggie was OK and we had a date of August 31st to visit with the surgeon. The surgery had been moved around and the date that we ended on was September 9th. The children took that date and began earning money. They all chipped in every dime they had to buy Moogie a portable DVD player. They wanted her to have something to do while she was in surgery. I am telling you this is one tight group of kids. When one is down they do everything to rally together to take care of that person. (8-05)

At least now we had a mission. We would be waiting to talk to the surgeons. The big kiddos were starting their school work early. They gathered all their money together to buy Moogie her DVD player and a few DVD's. We let family know that wanted to visit when they should come. We made and gathered book pages from all over. We watched TV and were horrified as our hospitals became full of patients after Hurricane Katrina hit New Orleans. We were told that our surgery might have to wait. It would depend of the urgency of that day. We knew we were in good hands, they say that one of the major expenses of this surgery is just getting to Houston. That was our sign we were already here. God had us where we needed to be.

Notes came in from everywhere. Friends that we had not talked to in years were sending prayers. My husbands company was bending over backwards to care for us. My sister, her family and my mom had planned their visits. We felt peace. The world was crashing in around us and yet we were loved and felt safe.

Our visit with the surgeon took place and the reality of the situation was upon us. If we didn't have the surgery we would always be waiting for her to get sick. She might drop at any time. She would be one of those athletes that die on the court or something. We couldn't let that happen or the fear of that control our lives. If we came back the next Thursday it would be to prep her for surgery and then we had to be back at the hospital by 6:00 a.m. That Friday we had to sign papers that said we knew that our little Moogie might not make it through surgery. It was made clear that her open heart surgery was literal. It wasn't a stint or another non invasive procedure. She would be put on an IV and put under. Then her body temp would be cooled and her heart would slow down. Her chest bones would be cut and pulled apart. Her blood would then be diverted to a heart/lung by-pass machine. The machine would keep her alive and her heart would be completely stopped. Then they would cut into her heart and remove the extra tissue.

The night we left the meeting with the surgeon J had his first and only panic attack about the entire issue. We were letting them "kill" her to save her. Wow that was a difficult night for us as a couple. I had already come to the conclusion that we needed to go forward with the surgery but Jason had not. We called family, we called doctors, we called friends, we visited the Eucharist. In the end we knew what we had to do. After that point we didn't hesitate. We prayed several prayers as we signed the releases and put it into God's hands. We actually got to the point that we were ready to let her go if we had to. We didn't want to but we reached that point. She was His and we were just blessed to be in her life. (9-2-05) She had fun on the 8th as she visited with doctors. Mimi was in town and was there to help with the other children. Moogie loved the time she had with mom and dad. That Thursday she had tests done, blood drawn, toured the hospital and the pediatric cardio ICU. Oh my goodness that was the scariest place I had ever scene. Tubes every where. Moogie was ready. Her attitude was "let's get this done". At lunch that day with just Moogie was knew we were very blessed to have a houseful of healthy kiddos and to be here with Moggie now and not after she grew sick.
So back at home I tried to visit with my mom and relax. I couldn't. Moogie was given all of her gifts. Her siblings were so proud of what they got for her. She got Cookies sent from her God Mother and a case for her DVD player. Nanny and Gramps sent a Build-A- Bear that had been made special just for her. They even put the heart on the outside so that the doctors could reach it with ease. We packed up her new pj's and headed down on Friday morning. That was the longest drive of my life. We got there and had a wonderful visit with the surgeon. Many of our fears were put aside.

Moogie wanted to be awake as she was wheeled back. She wanted to watch and wanted to know what was going on. She asked if dad and I could come back with her. The doctor laughed and told her the room was too full as it was. There would be all kind of specialist in that room with her. They would also be a camera person to record to share with future surgeons. That wasn't good enough she just wanted a family member with her.

We had miscarried a child before getting pregnant with Moogie. As a family we decided that it was a boy. We named him Declan and knew that God had a purpose for him but we didn't know what it was until that day. I looked at Moogie and told her that because Declan was in heaven all she had to do was to ask God to let Declan come and sit with her until we would join her in recovery. She smiled and said that she knew God were let that happen. She was at peace with that idea and so was I. The child that I never got to hold would get to hold my Moogie as she struggled for life. It all fell into place for me.

Now I can not decribe the feeling of knowing that the surgery is underway and just longing to hear the results. J and I sat together but felt so apart. We were alone waiting together. We didn't talk much at all. We answered a few phone calls but still felt so disconnected. We were hungry but not hungry. We were tired but couldn't sleep. We could feel the prayers of everyone but couldn't pray. It must be what purgatory is like. We just sat waiting, longing for the door to open and for the hourly update from the nurse.

Moogie was under . . .

Her chest was open . . .

She transitioned to the machine nicely. . . then it hit me. "How do they start it back up, what if it didn't start back up, how do they control that???????" So many questions, no answers. Just fear!

Nothing. We waited and waited. Then the nurse told us that they had completed the repair. The doctor would give us details. What we waited all that time and no information? Time had stopped and nothing made sense.

Then the news came that her little heart started back up just fine. No problems or delays. It would still be another 2 hours to close her chest and then start recovery. The doctor would meet with us in an hour or so. All of the sudden my body felt the relief of three months of worry. I was suddenly starving. I had not felt hunger in months. I had not lost any weight too much worry. I had not eaten much and now I wanted food. My baby would be fine, I knew it. J and I held hands as we walked to the food court to grab a quick bite before meeting with her surgeon. That pizza was delicious. We laughed, we thanked God and called home.

We were not ready to see her. We thought we would be, but I don't think any parent is every ready to see their child hooked up to that many tubes. The doctor said that he was very happy that we had gone ahead with the surgery. He said that he wasn't sure even going into the operating room. Apparently all the doctors had a last minute conference on her risk for surgery vs. not having the surgery. He said that she actually had a lot more tissue present that he had anticipated. In retrospect he felt that she would have had cardiac issues in her teen years as her body tried to grow. We went back to see her and were so joyful until we saw her.

Moggie's skin had no color at all. She was so pale. They had just taken out her breathing tube, so her lips looked almost bruised. She had no clothes on and tubes coming out of every spot of her body. She didn't realize we were there at all. We were told to go get some dinner and come back she might be ready to see us around 10:00 p.m. We ran home to visit family. We hugged the other kids, greeted more visiting family, grabbed our tooth brushes and headed back to the hospital. She looked better this time.

The nurse told us how polite Moogie had been while coming off her medicine. The nurse said Moogie called, "Hey can someone help me. I am very sorry to tell you this but I threw up and my arms are tied down so I need help cleaning up." The nurse came over and began to help her. She said she got sick several times. I was concerned and was told it was a good thing. It was the fastest way to get all the sedatives out of her system. She would be feeling better soon.

That was when I grabbed the pictures. I knew that she wouldn't remember that room but I wanted her to see. That was a long night. We spoke with Moogie for just a few minutes and then were ushered out of the area. Another child was in cardiac arrest and they needed to prep for surgery. That poor family was up all night waiting for news. J and I offered them as much comfort as we could. We knew it wouldn't help. We prayed for them and for the doctors. We prayed for their baby and ours. We felt so lucky that night. Every time the nurse came to tell us that Moogie wanted us we jumped up so happy that she was doing well enough to call for us.

She was asking the nurse a million questions. She was also praying for the baby in surgery. She knew many details. Apparently that is what she had been doing with her time. She was listening to the stories of those around her. She said her doctor was even there. We didn't believe her as he had been at the hospital at 6:00 for Moogie's surgery and it was now 3:30AM. They we saw him ourselves. He looked tired. He smiled at Moogie and said, "I am so glad we did your sugery without it being an emergency."

Slowly all of her tubes were being taken away one by one. She was gaining color and her smile was coming back. She was moved to a regular room about 26 hours after surgery so it was about 4 in the afternoon on Saturday 9-10-09. We were told that after she was settled that we should run retrieve our things and come back for the night. I thought I was staying with her but Jason wasn't going to leave her. We ran home and stopped to grab a bite to eat.
It was then that we realized the date. It was our 15th wedding anniversary. When we were young we said that we would spend this one on a huge trip or cruise or something fun. We had forgotten all about that. I apologized to Jason as we sat over a bad meal at a fast food restaurant. He laughed as he reminded me of what was important, "I think having our Moogie back and in good health is the only way I would want to spend this special day!"
Moggie got sick a few times after we got back. At one point I called for the nurse because I was seeing colors that I should not be seeing. We thought Moogie was coming apart and then all of the sudden she was fine. She still had a drain tube coming out of her chest and and IV tube in but she felt great. I wanted her to stay in bed, look at her book, and rest. Jason wanted to see her up and about so when the doctor came by he gave her permission to explore the floor. She acted like a spy as she and her dad walked the floor. They met a great family and we all became fast friends. The nurses and doctors would play also. Moogie had always played hard but in the past would tire earlier than her siblings. Now that her heart was corrected she was good to go. We made her rest because we needed it, she didn't.
Then the celebrity in Moogie started to come out. She got phone call after phone call. Each one more special than the last. Then the visitors started on Sunday morning. She was given more pj's and even a cool pair of slippers. She needed to show them off of course. She would demand to take each visitor around for a tour of the floor and visit with her new friend. This friend had been here for several weeks and were from far away. They loved having the company, at least they pretended to enjoy our family and friends.

I did ask her if she remembered anything from the surgery. She told me that she remembers them telling her to relax and not to worry. She said that was easy because when she closed her eyes she saw Declan waiting for her. He had come to play with her while she was "sleeping". She says that they talked about all kinds of things. He told his sister that it wasn't her time to come to heaven yet but he would see her later. She said he held her hand and they went swinging and all kinds of stuff. She never felt afraid in recovery. Declan had told her she would feel bad but that she would be better fast and than God really loved her. She knows what he looks like and everything. I asked her what she told him. She said that she just told him that we all love him and miss him. He already knew.

We really did take over the floor. We were just so happy at the outcome. I wanted to stay in the hospital for a week at least but J was itching to get home. He felt that at home we could take care of her. I didn't think I would know how to care for her and wanted to have the nurses at hand. In the end she was recovering too fast for me to win that battle. We headed home that Tuesday. (9-13-05)

We sat in traffic for ever that night. Moogie begged for medicine half way home. We stopped as soon as we could and the poor Walgreens people tried their best to fill her order quickly. She came home to find her siblings had a welcome home party in progress for her. Many meals had been dropped off with a few gifts. Moogie would sleep downstairs until we felt comfortable enough to send her up. It didn't take long.
Two weeks after we left we had to go back down for a check up. The city was being evacuated because of the threat of Hurricane Rita. We lived far enough inland to know that we needed to hunker down. We had no money to travel with anyway and Moggie wasn't supposed to go on any long car rides. She was a real trooper that week. No power, nothing but heat, with no relief. she couldn't soak in the pool. She must have been miserable. She just kept offering it up for all her doctors and all those heart babies.

This girl had been through it all. Three weeks after the surgery and after our electricity was restored she slept better than she ever had before. In fact she scared the living daylights out of us. We heard her screaming and ran up the stairs to comfort her. Was she in pain? Was she in trouble? What was happening and why? "I was asleep and I was at the park. . ." "OK what happened?" "Nothing I was at the park but I am here." "What did you see? A lion? A bear? A monster? A demon? What scared you?" Well I was at the park and you were there and dad was there. . ." "Did we hurt you?" "No we were at the park but we were here!" "Wait a minute . . .did you know that when you fall into a certain sleep mode you will begin to dream." "What is a dream?" "You see pictures, feel stuff, it seams very real but you are in bed the entire time!" "No way that was cool do you think it will happen again?" As it turned out my little one had been having heart trouble her whole life. She had not dreamed until that moment. Since that time we have noticed other delays. Her speech is a little off. Her hand eye coordination needs some work. A few things like that.

She has been back for check ups. Everything is fine and they don't anticipate any problems. She will need one more round of tests at about 5 years to verify that her heart rhythms were not disturbed by the by-pass machine. So that is the short version (believe it or not) of Moogie's heart condition. A year after her surgery I wrote a thank you to everyone for their prayers. It still seams like it applies.


A year has passed!

Last year at this time I was begging you all for prayers for our little Moogie. She had a very rare heart condition that needed a very scary and unique surgery to correct. I wanted to take this time a year later (and again 3 1/2 years later) to thank all of you. Moogie made it through surgery and recovery without any problems. (Praise be to God!) She has grown so much this past year and is making up for lost time. Medically, Moogie is doing wonderful. Her heart is healing as expected and will continue to do so. She needs to be monitored for an irregular heartbeat over the next five years. It looks great and she feels fantastic. We are still amazed at how God has honored us by experiencing His love through each of you during this difficult time in our lives. Thank you all so much for your countless prayers, sacrifices, meals, gifts, loving and encouraging words and the pages for her book. The T family has been blessed by each of you. Thank you!

1 comment:

  1. You are so good with words! I have sat and cried while reading this. You and Jason are so good with your kids...I should take lessons!


I love hearing your thoughts. Thank you for stopping by.