Off of ECMO

We had had so many rough days for so long, but this day last year was a good one. A little after noon, Dr. Watts removed the vent they had placed in Peter's left ventricle for the blood that was pooling there and then they dialed down the numbers of ECMO to see how Peter responded. He did great! No issues, no complications. His kidney function dropped some (pretty normal), but then recovered later in the night.

What a day this was! We are blessed people to have truly witnessed a miracle. I can remember spending some time with Peter by myself and telling him that Jesus was right there in that room with him - caring for him, comforting him.

Improvement!

I promise I'm not going to bore you with the details of every single day we lived through in the hospital a year ago. After tomorrow's anniversary, things slowed down some and I can give an overview of each week instead of each day....... Thank you for reading about our experience. My mom has called it my "blog therapy":)

This day a year ago was better than the days before. In the morning, the cardiologist told us that Peter's heart function was much improved. They discussed taking him off ECMO that day, but as the day wore on, decided to wait one more day. We had a TON of visitors this day, which brought a lot of encouragement to us.

Interestingly, several days later, the same charge nurse that told us Peter was gray the night his heart failed also told us that she couldn't believe they were discussing taking Peter off of ECMO so soon. She felt his numbers were still far too unstable to even consider it. However, about 3:00 a.m. on February 28, 2009, Peter's numbers suddenly stabilized and stayed that way. She said it came out of nowhere and there was no reason for it. Just more enlightenment about the miracle.

Intercession

Today, a year ago.......

After a much needed nights' sleep, we went in to check on Peter. The cardiologist was there doing rounds and he told us that he was disappointed in Peter's heart function. He was hoping for more improvement. The purpose of Peter being on ECMO was for Peter's heart to rest and recover from the bad "event" the night before. The Dr. also briefly mentioned that without improvement, the next step would be a heart transplant. Again, it was like someone had punched us in the stomach.

We spent the day much like the previous day, between Peter's room and the waiting room. Tom's family were on their way down from Pennsylvania. We had visitors off and on throughout the day. Peter had to be taken back to the OR early in the day for Dr. Watts to place a drain in the left ventricle of Peter's heart because it wasn't draining the blood properly and it had pooled. I can remember feeling numb facing this procedure. I was too tired to even get that worried, which was probably a blessing.

At some point in the day (I can't remember exactly when), Tom and I were in the room with Peter and he was turned on his side. Tom was right beside his face and suddenly blood began leaking out of Peter's mouth and down the side of his face. Tom immediately alerted the nurse and they suctioned out Peter's mouth and nose. (You can see the dried blood on the tape around his mouth in the above pictures.) Tom didn't tell me this then, but this was his lowest point. It was at this point that Tom thought we would not be bringing Peter home. Later in the day, they brought in a gastrointerologist to do an endoscopy to see what was causing the bleeding. It turned out to be something fairly minor - Peter had a small tear in his esophogus. The Dr. said he wanted to watch it because he thought it would probably heal on its own. He said he didn't want to subject Peter to more surgery unless it was necessary. This did heal over time, but it was an overwhelming sight to Tom and to me to see him bleeding like that.

In the evening, the same cardiologist returned to do rounds again. This is the same Dr. that I've mentioned several times that was always so brutally honest, yet he was our favorite. On the night of Peter's surgery, I talked to him in the hallway and he was the only one to predict that Peter may have a rough road because that lung wasn't used to functioning. He later told me that he didn't think Peter would have THAT rough a road as it turned out. This cardiologist is an incredible doctor! Anyway back to Feb. 26th, the Dr. said that we needed time and prayer - basically, a miracle. Oddly enough, those words brought me tremendous strength instead of the discouragement you would think. I knew that when man's knowledge has reached its limit, there was huge opportunity for God to show off His glory with a miracle. I began to feel a conviction from the Holy Spirit to intercede for my son that was almost physical in its strength. We had some visitors and I can remember thinking, "If they don't leave soon, I'm going to have to excuse myself. I've GOT to pray!" Please don't misunderstand, I had been praying throughout this journey, but this conviction was different. It was a specific calling by the Lord Himself. It was time.

The visitors left soon, and Tom and I headed back to our sleep-in room. Tom began getting ready for bed and I grabbed my Bible and told Tom I had to go pray. Tom asked if I wanted him to go with me and I said no. This was business between me and God. I headed to the meditation room, which became a safe refuge for me to go many times during our hospital experience. There, I went before my Lord. I recounted to Him my own miraculous life (another story for another time), the miracles I could recall from His Word, and asked for another. It was worship! So many things I've recounted here were beyond words in a sorrowful sense, this worship time was beyond words in the best way possible. Some things are just between a woman and her Lord.

I went to bed later that night with peace. A miracle was on its way..........

Quick update: I took Peter back to the pediatrician's office yesterday for a weight check. He's gained over a pound since last week. I guess all that bulk food helped! A big relief to me.

CODE!!!

Here's the part I have been dreading to remember.........

Like I shared before, it began with a knock (really a pounding) on our door at the hospital sleep-in room around 3:00 a.m. The nurse told us to get dressed and come to the waiting room. She said Peter had had some complications and Dr. Watts would be in soon to talk to us. We waited an agonizing hour in that waiting room. Tom paced the room over and over again, while I just cried. We had no idea what was going on and the longer we waited, the more we wondered if the Dr. would be coming with the news that Peter was no longer with us. Finally, Dr. Watts came in along with the nurse and explained what happened. Around 2:30 a.m., Peter's nurse had just done a blood-gas check on him and his numbers were perfect. She then turned him on his side (standard to turn them from time to time), and Peter's heart stopped. They performed immediate C.P.R., but were unable to get Peter's heart started again. They then re-opened his chest and Dr. Watts manually pumped Peter's heart (literally with his hand) until they got him hooked up to ECMO (heart/lung machine that removes the blood from the body, oxygenates it, and puts it back in the body - basically, performs the function of the heart and/or lungs similar to what is used in open-heart surgery). Dr. Watts said that Peter's blood pressure was stable throughout this "event," but only time would tell what the fall-out was. He said Peter may not make it, may have brain damage, and there was a slim possibility that he would recover completely. Not good odds.

Dr. Watts told us we would be able to see him in about 30 minutes, once they cleaned up the room. I realized that the room probably looked like a war-zone. As we waited, I continued to cry while Tom made phone calls. I'm so thankful that Tom was able to function because I could not. Throughout this whole experience, it seemed that if Tom was down, I was doing okay and if I was down, Tom was doing okay. Another example of God's plan. Ecclesiastes 4:9-10 says that two people are better than one because if one falls, the other is there to lift him up. This Scripture perfectly describes Tom and me. We both fell (more than once), but when we did the other was there to pick up the first one. We never hit our low points at the same time.

The nurse came back in a while and took us to Peter's room. I only vaguely remember this period of time. I do remember the night nurse standing there and I could tell by the look on her face that she wondered how we were going to react. She did nothing wrong, but when a parent's baby has gone through something like that, it's normal to want to blame someone, all the more so when there isn't someone to blame. We want answers. We want reasons. But we don't always get that luxury. I can recall clearly making a choice right then and there to resist the urge of my flesh to cast blame and look to my sovereign God instead. He knew the answers. He knew the reasons. Whether I liked it or not, I had to rest in that.

Tom and I didn't stay with Peter too long. We went back to our sleep-in room to get ready. I should say for Tom to get ready because I was beyond being able to function. I laid on the bed and again turned on my computer to hear some preaching. In the sermon I listened to, I heard the words, "Our theology is not shaken by death." That one statement alone enabled me to at least make at attempt at getting up out of the bed. Very shortly after that, our pastor arrived and soon after him, more friends. These sweet people helped us get our stuff moved out into the waiting room and sort of "set up camp" there.

Throughout the morning, we drifted between Peter's room and the waiting room. Dr. Watts came and talked to us again and said they wanted to do a heart catheterization. He said Peter had developed several collateral ("extra") arteries going from his heart to the left lung (the body's way of compensating for lack of blood flow to that lung). Their suspicion was that with the left pulmonary artery now connected, there was too much blood flow and it overwhelmed Peter's heart. Dr. Watts described it as if you never did a day of exercise in your life and suddenly decided to run a marathon - obviously your body couldn't take it. They wanted to coil off some of those collateral arteries. We agreed, and they took him down to the cath lab around mid-afternoon.

Of all my low points, this was the lowest. We met with the interventionist (heart cath specialist) and he said that Peter's chance of simply surviving the procedure were extremely slim, considering he had open-heart surgery the day before, a bad "event" that night, and he was on ECMO. I clearly remember barely holding it together until we got back to the waiting room and then telling my mom I HAD to get out of the hospital for a little while. She took me to her car. We both sat in there and just cried. We made some phone calls through our tears also. I will never forget that time. For the first time in this journey, I had to think about what it would be like to drive home without Peter in the car. I even had to face the fact that we might have to make some funeral decisions. Overwhelming. Painful. Beyond words.

After awhile in the car, Tom called to tell me we had some more visitors, one being Dr. Russell Willis from Pitts Baptist Church. He has always been one of my favorite people and the thought of him being there brought a lot of comfort to me. When facing the extreme circumstances of life, people that have lived many years on this earth can bring a strength with them that no one else can. My mom and I went back to the waiting room, where there was a large number of people. Again, we passed the time with talk, and again - miraculously - with some laughter. Finally, about 6:15, we got word that Peter had tolerated the procedure well and was headed back to the CVICU. The Dr. was able to coil off about 7 of the 10 collateral arteries. (Since then, I've seen many chest X-rays of Peter and it looks like he literally has a coiled phone cord running lengthwise inside his chest.)

To be completely honest, I don't remember much about the rest of that day. I know we spent some time with Peter and then went to bed. I do remember being in a state of exhaustion like I had never known before or since. I do also remember that we slept that night.

It was several days (I think even over a week) before the charge nurse that night told us some more details. I'm thankful for these details and I'm also thankful we learned about them later, when we were able to handle that knowledge. She said that she was in the breakroom when the code came out. She ran into Peter's room and she said he was gray. She told us her first thought was, "Why are they doing anything? This baby is dead." The nurse told us that Peter is without denial a miracle. He shouldn't have lived.

"You shall not die, but live and declare the works of the Almighty God." - Psalm 118:17

Open-Heart Surgery

One year ago today, at this time, Peter lay on an operating table with his chest open, his heart stopped while a heart/lung bypass machine performed the functions of the two most vital organs in the human body, with his heart cut open and literally in the hands of the surgeon, Dr. Watts, while ultimately in the hands of his Creator God. A big day, the outcome of which has forever changed our lives.

The day began very early in the morning. Like I shared before, Tom and I were able to sleep a good bit the night before, which was a surprise. The supernatural strength and calm that had descended the previous evening was still enabling us all through the morning. I can remember wondering, "When will this calm leave me? When am I going to fall apart?" Tom and I got up and got ready and left the house with Peter around 5:30 a.m. The drive down to the hospital was calm and quiet. Peter slept, which was a huge relief compared to how fussy and agitated he had been prior to the heart catheterization when he had had to go without food. Again, this could only be attributed to the Lord Almighty.

We got to the hospital and checked in. We were taken to a pre-op holding room, where they did some very minor preliminary tests on Peter (height, weight, blood pressure, etc.). The anesthesiologist came in and met with us and explained his part in Peter's surgery. Dr. Watts came in and again went through the objectives for the day. At this point, we still didn't know if we would be dealing with heart surgery or open-heart surgery. Dr. Watts said that he would try to have someone provide us with updates whenever possible, but that his attention would be given to Peter so we may not always get to know what was going one. This was, of course, fine with us. Much as we wanted to know how things were going, we wanted Dr. Watts' focus to be on Peter more than on easing our minds.

After about an hour in the pre-op room, it was time to say goodbye. I had been holding Peter for a good while and he was asleep in my arms. This was such a blessing. Tom and I both kissed him and calmly handed him to the nurse. Peter never woke up. Such a big moment, yet so guarded with the peace that passes all understanding.

A hospital worker took us to the surgical waiting room and when we told the receptionist that we had a lot of friends coming, they gave us a private waiting room. Shortly after getting settled, many friends began arriving. Tom and I ate a little breakfast and mostly we all just talked and visited, and I must include, we laughed. I never before realized the importance of laughter in a crisis situation. It can often be as much of a release as tears and there is a time for both. I'm so thankful for those that cried with us and also for those that made us laugh.

Throughout that long morning and afternoon, we got about three updates, the first (around 10:00) was to tell us that Peter did have to go on the heart/lung bypass machine (which meant we were dealing with open-heart surgery), the second (around 11:45) to say that Dr. Watts was progressing as planned, and the third (about 12:45) to tell us that Peter was off the heart/lung machine and doing well. Finally, in the afternoon about 3:20, we were told Peter was in the CVICU (cardiovascular ICU) and we would be able to see him soon. Again, contrary to the heart cath the week before, we were prepared for the sight of Peter's condition. Although the sight was difficult, Tom and I had gained an entire education on congenital heart defects and their related surgeries in the previous week. Also, the great ICU nurses were very helpful and informative. They patiently answered every single question we had. Like I said in the posts last week, communication at the hospital was superb.

Tom and I spent a long time with Peter and then we went down to the cafeteria to eat dinner. While there, a friend whose baby had his own miraculous story, sat with us. This friend was another source of great encouragement, having been through such similar circumstances. When life becomes extreme, a friend that can completely relate is invaluable.

We went back to Peter's room in the evening and met the night nurse that would be taking care of him. We finally settled into our sleep-in hospital rooms (just down the hall from the CVICU) about 10:00. While getting ready for bed, I looked through some of the care packages we had been given while we were with Peter. In these packages, were two stories of babies that had died - one during open-heart surgery and one soon after surgery in recovery. Looking back, this was such a mistake. I knew quite well the realities of what Peter was facing, it did me no good to read about it. Facing death is one thing, dwelling on it is another. I went to sleep that night with anxiety for the first time in over 24 hours. What a foothold I had given to the enemy, especially with what was yet to come..................

The Night Before Surgery

One year ago today marks the night before we took Peter in for (what would be) open-heart surgery. I remember clearly that my parents came over and we all ate dinner together and then they took Alana home with them because we had to leave so early in the morning. After they left, Tom and I spread a blanket out on the floor and laid Peter on it with some toys. We put in praise & worship music and just laid there with him on the floor, listening to the music and watching Peter. It was one of the sweetest times of worship in my life. Believe it or not, we were unafraid. Another example of sufficient grace for the moment.

I thought for sure that we wouldn't be able to sleep that night, but we did. We even put Peter in the bassinet in our room. We kept the praise music on throughout the night. That night was a time of supernatural strength. We were calm, confident, and covered.

On another note, the nurse just called with the date for Peter's next tests - two weeks from today (Tuesday, March 9th). He will have a chest X-ray, and be sedated for a lung profusion study and echocardiogram. I would really appreciate your prayers for this day, I dread it. Here are our prayer requests:

1. For us as we deal with Peter. He can have no food or drink that morning, so I'm sure he will be miserable and fussy.
2. For Peter during the tests. Like back in August, the tests themselves are not that bad, but he will have to be sedated and that is always a concern.
3. For the results. Specifically, that the artery will have grown significantly and not have narrowed AT ALL. Also, that the flow (blood flow to the lungs) will be the same or even better. In short, that Peter will need no further intervention to keep that artery open.

I'll update again tomorrow about the surgery day last year.

Knock on the Door

This has been a rough week for me. I'm not sure exactly why, but grief over what we went through a year ago has washed over me as freshly as if it just happened. There is probably a combination of factors - all these anniversaries, the many memories flooding back as I write about my experience, etc. Who, but God, can know all the reasons? The human brain and psyche is a complex thing that only He comprehends because He alone created it.

Although I haven't come to this part of the story yet (it is the part I dread to recall the most), I had some thoughts today that must be shared. I have told people this week that I will NEVER recover from the knock on our door at 3:00 a.m. after Peter's open-heart surgery. That knock forever changed my life. Isn't that kind of knock every parent's worst nightmare? Whether you are like us sleeping in a room in the hospital with your child teetering on the precipice of life and death, or whether you are home in your bed with your teenager out on the road at night without you. The knock that can change your life in an instant - it changed mine. My faith was stretched to all new levels after that knock, and the enemy has used every opportunity to insert fear. The battle not to be afraid has become a daily one for me.

It dawned on me today that I can choose not to be defined by the the knock on our door at 3:00 a.m. on February 25, 2009. I can choose to be defined by a different knock on the door. A bigger knock on the door. Another life-changing knock on the door. The Scripture came to my mind, "Behold, I stand at the door and knock." Those are the words of my Savior. Those are the words of Jesus. Even better, let me put those words into context:

"I counsel you to buy from me gold refined by fire, so that you may be rich, and white garments so that you may clothe yourself and the shame of your nakedness may not be seen, and salve to anoint your eyes, so that you may see. Those whom I love, I reprove and discipline, so be zealous and repent. Behold, I stand at the door and knock. If anyone hears my voice and opens the door, I will come in to him and eat with him, and he with me." Revelation 3:18-20

Jesus is standing at the door, knocking. His counsel is for me to buy the gold that has been - and will continue to be - refined by fire. The result of this is that I will be rich, clothed, and I will have eyes to see. That, in itself, is worth it, but it gets even better - BECAUSE HE LOVES ME! Enough said.

Going Home

A year ago today. Do we look tired or what?

This post is late in coming today. Peter had an appointment at the pediatrician this afternoon to get another R.S.V. shot. The Dr. came in and talked to me because she was concerned that Peter has lost 2 ounces since last month. I was very concerned too. She said it could be just that he is so active (and he is - literally on the move every waking moment). She said to watch it over the next month. I went grocery shopping tonight and bought Peter some multi-vitamins, some Carnation Instant Breakfast to add to his milk, and as much "bulk" food as I thought he could handle. Please be in prayer about this. Lost weight is not good news, especially when I've been dealing with a lot of emotions about Peter this week anyway.

This day a year ago, we were going home. We still had to deal with open-heart surgery, but we were SO relieved to just be home, sleep in our own beds, and be together as a family. That morning as Tom was getting ready and Peter was sleeping, I was flipping around on the hospital T.V. when I found some Christian teaching. The lesson was on facing your greatest fears - so timely! I still can't imagine anything worse than the loss of your child.

Tom and Peter and I were finally able to go home in the afternoon. Once home, poor Tom had to head back to the emergency room with a terrible case of the flu that I'm sure he caught in the hospital. Thankfully, no one else caught it. The day after we came home, Dr. Watts called with the surgical plan. He said he wanted to try to attach the pulmonary artery and not necessarily close the VSD - the difference being either heart surgery (where the heart itself is not stopped and cut into) or open-heart surgery (where the heart is stopped and the body is put on the heart/lung bypass machine while the heart is operated on). Dr. Watts said we could use medication to try to get the VSD to close on its own over time (months), but if that didn't work, then Peter would have to go back to have open-heart surgery at a later date and close the VSD. He said this plan was tentative because it would largely depend on how things went once he was in the operating room. Tom and I both were torn, although we completely agreed with his analysis and to proceed according to his suggestions the following Tuesday. We were torn because in one sense, we wanted to avoid open-heart surgery if at all possible. However, we didn't want to subject Peter to heart surgery, just to have him need to be opened back up again in six months. This made our prayers very clear - God would determine which of those options was best.

Two days after we came home we had to go back to the hospital for Peter's pre-op appointments (chest X-ray, blood draw, etc.). This was an exhausting day! I held Peter for almost the entire day and I remember thinking that my arms should be tired from holding him so much, but Peter was so light it was no effort to carry him around all day long.

We had basically five days at home and we spent those days resting and preparing for the next leg of the journey. People made so many meals for us that we had to send food to my parents. Our greatest challenge over those five days was getting Peter's four medications in him. Twice a day, it was an agonizing ritual. Peter (to this day) has a strong gag reflex, plus those medications taste horrible, and of course, Peter was only two months old. We dreaded medicine time, and more than once they came back up again, which made me so afraid because Peter needed those to literally sustain his life, yet I didn't dare to give them again and risk overdosing him.

On the whole, our five days at home were restful and peaceful. It was a time to get rejuvinated - a time to just be. My mom came over and helped us out a lot. She was a huge help. She also got to spend some special one-on-one time with Peter. He was a joy the whole time.

The First Heart Cath

This morning a year ago was another low point for me. As I recall all these "lows," I've realized that every one was lower than the one before. Peter was scheduled for his diagnostic heart catheterization at 7:00 a.m., which meant no food from 2:00 a.m. Tom and I slept very little (if at all) that night. We finally gave up trying and starting getting ready for the day around 5:00. I can clearly recall sitting in the rocking chair, holding Peter (who was VERY fussy and hungry) and counting down the minutes until they would come for him. I kept having some awful thoughts like, "Will this be the last time I hold him? Is this my last hour with him?" A heart cath was so mild compared to what Peter (and us) had yet to face, but at this point in my journey, I couldn't help wondering..... We walked down to the cath lab with several nurses and then kissed Peter goodbye and handed him off. No words, just emotions. The Dr. that would be doing the heart cath talked to us for a few minutes and gave us the hard facts. All of the cardiologists were brutally honest - something that was very difficult and yet helpful at the same time. We headed back to Peter's room to pass the time.

During the hours of the cath, we had a lot of visitors which was a great distraction. We spent the morning talking and laughing and even eating. Around noon, the two cardiologists came in to talk to us. They said that Peter's pulmonary artery was connected to the lung, but not to his heart. They were going to consult with the surgeon before deciding how to proceed. At this point, this was very good news - a great example of how our perspective had changed. They said Peter was in recovery and we would be able to see him in an hour or so.

When we were called in to recovery with Peter, I was completely unprepared for how he would look. He was ghostly white, hooked up to many tubes and wires, and they were concerned because they couldn't get him to wake up. Also, his blood circulation was poor. Gradually, Peter improved and was able to be moved back up to his room. As the day passed, Peter recovered. He regained his color and ate and was alert. The pictures (above) were taken that night about 8:00. Peter was really waking up and looking at his hands and at that monkey my aunt bought for him.

In the evening, we met the surgeon, Dr. Watts, whom we liked immediately. He said that the cardiologist team met together on Thursday mornings to discuss different cases. He said they would need to discuss Peter's case together and have everybody's input before making a recommendation to us. In the meantime, they were going discharge Peter in the morning because staying in the hospital just put him further at risk of catching something and complicating things. Tom and I were so relieved to be going home. It wasn't a total relief - we knew we had as yet much more to face, but going home was enough for the moment. The rest of the night was relatively quiet, although again, not much sleep. When we were home, Tom and I calculated how much sleep we got over six days in the hospital and it came to 6-8 hours - that's total, not per night. It is miserable to be in shock, highly emotional and exhausted.

I don't want to over-spiritualize our experience, but sometimes spiritual analogies jump out at me when I write all this out. I was thinking about how the whole heart catheterization procedure was nothing compared to the open-heart surgery we had yet to face, and yet it is the heart cath where fear enveloped me. Among many things, preparation was partly the cause. I was totally unprepared the day of the heart cath. By the time we reached open-heart surgery, I was much more together. I had had time to read and prepare and talk to other people that had been through what we were going through. I had some much-needed sleep and time at home with my family. I had had time with the Lord and in His Word. The heart cath was like the dress rehearsal for the big show. I felt like my performance in the dress rehearsal was lousy, I was afraid and generally nothing but a mess. However, by the time the curtain rose on the real show, I was ready. It didn't matter how badly I failed in the dress rehearsal because the performance in the big show was all that really mattered. I cling to that idea when I feel like I'm failing in this life and that is often. This is only the dress rehearsal. When the curtain lifts on the real performance, I'll be ready. God will make sure of it.

Heart Failure

This morning one year ago hit us like a mack truck. As I shared yesterday, we were riding on some false hopes the day before. Early that Monday morning, we saw a different cardiologist. This Dr. later became our favorite, but at that time we were unpreprared for his blunt and honest communication. He came in to do rounds and examine Peter and he told us that he wasn't one bit convinced that they found the pulmonary artery. In fact, his initial diagnosis was that the pulmonary artery either didn't exist, or was not connected to Peter's heart. Either possibility meant that Peter was only living on one lung. Also, because of this and because of the VSD (hole in his heart), Peter was in mild congestive heart failure. The Dr. went on to explain that people think of elderly folks with these words, but it can happen to anyone. Congestive heart failure means that congestion (fluid or gunk) is building up in/around the heart, similar to how congestion builds in our noses and throats with a sinus infection. However, obviously with the heart being the most vital organ in the body, congestion not dealt with over time will be fatal. The Dr. told us that this was why we were seeing the feeding issues. He asked if Peter was sometimes sweating while he ate and I said yes, although I hadn't thought to take notice of that before. The Dr. told us that the next sympton we would have seen is cyanosis - or blue baby, meaning that Peter would have started turning blue. He told us that he was going to immediately start Peter on 4 different medications to try to counteract the heart failure and he was going to order a lung profusion study for that day. (A lung profusion is where they inject dye into the body and take X-ray images of the lungs to see how much dye is going into each lung.) The Dr. said he was sure the lung profusion would show 100% flow to Peter's right lung and 0% to the left. If the results were as he thought, the next step would be a diagnostic heart catheterization to figure out where that pulmonary artery was, if it existed. The Dr. told us we were looking at two possibilities - if the pulmonary artery didn't exist at all, Peter would live his life on one lung, but would still need surgery to close the VSD, the other possibility was if the pulmonary artery existed but wasn't attached, he would need surgery to attach it and still close the VSD.


By the time the Dr. left, I was reeling. I felt like I was in heart failure too, of a different kind. Just four days before, I thought Peter was maybe dealing with reflux or a milk allergy, and just one day before, I thought Peter may be going home on some medication to close the VSD. Suddenly, I was hit with mild congestive heart failure and living on one lung. Either scenario the Dr. presented would require open-heart surgery. Again, the shock washed over me.

A few hours later, our nurse, Jason, came to take us down to radiology for the lung profusion study. Some friends had come to visit us and were willing to wait until we came back. The lung profusion study didn't take too long and I was able to keep Peter relatively calm with a cup of ice that turned into a makeshift rattle. On our way back, I stopped in the waiting room to visit with those friends. Both of these two ladies are more my mom's friends than mine, but both were willing to drive all the way to Charlotte to bring some encouragement and to pray with me. I remember specifically the words of one of their prayers. She said, "God, be with Tom and Kelli as they walk through this valley of the shadow. Death is all around them, but Jesus, You are life!" What a lift that was!

Later that day, we got the results of the lung profusion and the cardiologist was exactly right - 100% to the right lung and 0% to the left. Peter would need a heart catheterization first thing in the morning. In the evening, my mom and dad, Alana, and my aunt (who had come in town to help out), came up for awhile. They stayed with Peter so that Tom and I could go down to the cafeteria and have a meal together. Tom and I were silent as we walked, very unusual for us. There just weren't any words to say. Some things cannot be expressed in words. As we were eating, there was a family sitting together and the little boy, who looked to be about 4 or 5, began singing to his mother - the song was something like "I am my mama's baby boy." Again, no words, just tears.

When we came back to the room, more friends had arrived and we had a good time visiting. All the visits from friends lifted our spirits tremendously (even if just for a moment). When everybody left though, it became very quiet. We got ready for bed, which always struck us as a bit of a joke because we hardly ever slept. I began something that night that became a nightly ritual for me while we were in the hospital. I used our laptop to find some preaching and listened to it for a long while. It was a good way to go to sleep and quite honestly, the only way I could. If I had quiet, my mind took over with thoughts too heavy to deal with and I wouldn't be able to sleep at all. Thus began a very long night.

More tomorrow...........

False Hope

This day a year ago was a fairly quiet one. My mom took me back to our house to get some things from home and then over to her and my dad's to spend a little bit of time with Alana. While we were out, Tom called to tell me that the cardiologist had done another Echo and thought he found the pulmonary artery. This was great news. We thought that maybe Peter would be going home with medication or maybe at the most, a heart catheterization. Little did we know how wrong we were. It was a nice reprieve to think we had faced all we were going to have to face. However, this false hope made the following day much worse, but I will post about that tomorrow.

This morning, we took Peter to an appointment with the cardiologist. Peter did horrible! He is very untrusting of anyone other than us and he doesn't like being messed with AT ALL. The tests they do don't hurt (EKG, blood pressure, pulse oxygen), but Peter has been stuck so many times at the Dr.'s that he has no tolerance. The cardiologist couldn't even hardly hear his heart/chest with the stethoscope because Peter was so upset. The Dr.could only get a few seconds at a time. The cardiologist wanted to go ahead and schedule Peter for the same round of tests that he had back in August to be done again in a few weeks (sedated lung profusion study and Echo). He said he heard a little more of the heart murmer on the left side of Peter's chest, whereas before it was more equal, but he also said he wouldn't put a lot of stock in his physical exam because Peter was so upset. The purpose of doing these tests is to watch that pulmonary artery so that if intervention is necessary, the sooner it's done the better. If intervention is needed, it would most likely be a heart catheterization.

I will admit that just being there today, coupled with the fact that I've been doing such much reminiscing lately has brought my emotions to the surface again. I think in the last few months, I've come dangerously close to thinking of Peter as "normal." Even though he is awfully close to "normal," today was a reminder that he is a cardiac kid and always will be. He will always require follow-up and possibly maintenance. I hate that. I so want normal and guarantees that I will NEVER have to again go through what we went through last year at this time. However, despite what some preachers say, that is not what God promises. Jesus' words were, that in this world we WILL have trials and tribulations (John 16:33). There is no escape from it. Jesus also tells us our response though - we are to take heart, because He has overcome the world! That is why we can live as more than conquerors. It is when we cling to the false hope that we won't have trials, that we are defeated. Our only shot at victory is in Christ alone.

Please continue to pray for Peter. My specific request is the same as it's been - that the artery will have grown sufficiently for NO intervention. When we know the dates of Peter's tests, I'll post them.

Valentines Day - A Year Ago

This day last year was the first of some really low points for me. After a rough night, we were told that Peter was going to be transferred down to Levine Children's Hospital in Charlotte. We knew it would be a few hours before all was ready for the move so we spent the morning getting ourselves ready and trying to keep Peter content. We also had some visitors that morning, which encouraged us and helped to pass the time. Finally, in the early afternoon, the transport team arrived to take Peter down to Charlotte. Tom took our things to the car and he was going to drive the car there while I was able to ride with Peter in the ambulance, for which I was SO thankful. I remember that the transport "team" consisted of about five different people - a pulmonary specialist, a nurse, a paramedic and two drivers (I think). I couldn't believe that my baby was so sick that he needed that many people to drive him 20 minutes down the road. It took several minutes for the team to get him all hooked up and situated in the isolette. Poor Peter was hooked up to every type of monitor imaginable. He was also strapped down (arms and legs and everything) so tight that he couldn't move AT ALL. This was very hard to watch because Peter was obviously upset and also because after only a few minutes, he just gave up crying and went to sleep. He didn't even have the energy to really fight something so uncomfortable because he was in heart failure.

I rode in the front seat of the ambulance with one of the drivers. There was a camera up there so I could see Peter the entire time. The ride down there was HORRIBLE. I was moving out of shock (to some extent) and beginning to realize the full implications of what was happening. Our son had a major heart defect and was probably looking at open-heart surgery. Things were very serious. I was beginning to face the possibility that Peter could die. During that ambulance ride, the driver (who was very kind) and I made small talk. I remember feeling like I was in two worlds at once - one in which I was sitting there calmly talking to the ambulance driver about his move to this area and the other in which I was facing the possibility of losing my son. How little I knew that I would become very familiar with this paradox way of life. Going on normally because normal life does go on and must be dealt with, yet grieving on the inside to the point that cannot be expressed in words.

When we arrived at Levine's in Charlotte, our nurse Jason was waiting for us in Peter's room. I had been more than a little apprehensive about going to Charlotte, mostly out of a fear of the unknown. Being the big "city" hospital, I was afraid that we would get lost in the system, that the medical care would be cold and professional, and that we would be just a number to them. I couldn't have been more wrong. The medical care was professional, but not cold in any sense. We were treated with warmth, hospitality and genuine concern for what we were going through. Information (or anything else we desired) was available to us day or night. Communication was obvioulsy a high priority for this hospital. Jason gave me a tour of the room and was so thorough in everything relating to Peter's care or the hospital itself, that I was stunned. Tom arrived shortly after that and he barely got in the room and put our stuff down before the cardiologist was in the room to introduce himself, take a look at Peter and answer our questions.

This was the point at which we first learned that Peter not only had a hole in his heart (ventricular septal defect - hole in the bottom portion of his heart), but also that the Dr. didn't see his left pulmonary artery in the images from the echocardiogram done the day before. The cardiologist wanted to do another Echo as soon as possible to find that pulmonary artery. Within minutes, the Echo technician arrived along with the Dr. to take another look at Peter's heart. The results of the test were still inconclusive. The Dr. said he would try again the next day because Peter was very fussy and wiggly throughout the Echo.

Shortly after the Echo, we began to get some visitors. I remember leaving Peter's room for a minute and heading down the hall to get a drink and meeting our pastor, his wife and the music minister from our church. As soon as I saw Cindy, I burst completely into tears. I will never forget that moment. Standing there in the hall, clinging to Cindy and just falling apart. More friends arrived and a little while later we were all in Peter's room standing over his bed looking at him. I remember someone remarking that he was the healthiest-looking sick baby they had ever seen. Cindy then went on to share about her grandson that was born just two days before. She said it was funny because he was born exactly a year after another granddaughter. Both of these two grandchildren had come on the day after the anniversary date of her first husband's death. I so clearly remember her words, "It's as if God is redeeming the month for me." That statement gave me such hope and confidence. As yet, I had no idea how this situation would turn out, but I knew God would redeem it.

My mom also came up and stayed with us that night. Tom and I were able to eat a decent meal, calm down a bit, clean up and rest. I do say rest - not necessarily sleep. Feeding issues were what began the whirlwind we were in and those feeding issues were still there. On top of that, we were feeding Peter all the time to keep him content with all the tests and picks and prods that were happening to him, so he really just wanted to be held and eat a little, sleep for a little while and continue in that cycle all night. It was another rough night.

I must close this post with some more "doings" of Peter today. He shoved a toy in the VCR while we weren't looking (Tom was able to fish it out). He pushed a small garbage can across the kitchen floor while walking on his knees. And, he looked at some pictures on the wall and clearly pointed and said "Nana" (my mom), "Daddy" and "Mama."

Happy Valentines Day!

Friday the 13th - A Year Ago

A year ago today we went from thinking our son had some type of feeding issues like either reflux or a milk allergy to realizing we were going to be fighting for his life. Tom and I now refer to that day as "Black Friday." I remember the day so well. I woke up hopeful that Peter would eat better. I tried to give him a bottle first thing in the morning. Peter didn't take much at all, so I thought I would try again when I got back from taking Alana to school. He was very sleepy and I supposed after a nap he would feed better. I tried to wake him up around 9:00 and again, he wouldn't take a bottle AT ALL, but just kept falling back to sleep. Yet again, I thought maybe a nap would help. I tried to wake him up about 1:00 and couldn't really get him to wake up. It wasn't that he was unconscious, but he would only wake up for a minute or two and then fall right back asleep. He had no energy to do anything, much less eat. Worn out with frustration and in tears, I called the pediatrician's office. While explaining to the nurse Peter's symptons, she interrupted me to ask if I had a cold (I sounded congested because I had been crying). I fell completely apart at that question and the emotions just poured out. That sweet nurse immediately suggested we schedule an appointment for that afternoon. I will always be thankful for her insight. I think that nurse made the call based solely on this upset mother than even because of Peter's symptoms. She knew that if I was that distraught, then something was indeed wrong.

The next several hours sent us into a whirlwind pace. I called Tom at school and got ready very quickly to get out the door. Tom came home and we picked up Alana early from school and headed straight to the Dr. I knew something was very wrong when the Dr. listened to Peter's heart through the stethoscope several times. The Dr. asked us if anyone had ever mentioned Peter having a heart murmer. She gave some explanations about a heart murmer and then she asked if we would rather wait and schedule an appointment with a cardiologist or go straight to the hospital. I could tell the Dr. was leaning towards the hospital scenario because we would get answers faster. We completely agreed.

We left the pediatrician's office and headed to Northeast Medical Center while making several phone calls all along the way. We got registered at Northeast and then were taken to a holding room for about an hour until a room came available. I remember sitting on the bed just holding Peter in a state of total shock. The nurse finally came and got us to take us to a room and standing outside the door was our pastor. I will never forget the relief I felt seeing him standing there. I was in desperate need of reinforcements while being in such shock. Once settled in the room, we went through the long process of answering hundreds of questions and explaining why we were there over and over again, which was exhausting. We were then taken downstairs for a chest X-ray and then an echocardiogram. Needless to say, Peter was not a happy camper throughout all this, but he was a little more awake for which I was thankful.

Things calmed down a bit after that. My mom came to our rescue with some much-needed dinner and things from home. We settled in for the night, but still made many phone calls. Tom and I were desperate for information. We talked to Tom's sister and another friend, who are both nurses. We knew we were dealing with some type of cardiac issue that would probably require surgery, but it was at that time unknown how serious things really were. I can now look back and be so thankful for God's concealing then. We were in way too much shock to handle all that we were going to go through. I slept very little that night and held Peter for most of the time, simply because I wanted to.

I'm so glad we are not where we were a year ago today, but with the perspective that time brings, I can be thankful for it. God had so much in store for us!

I couldn't bring this post to a close without a word on where Peter is today. He is strong and healthy and a typical baby/toddler. As I wrote part of this, he was licking the pots and pans in the dishwasher:)

Remembering.......

This time last year - my poor little sleepy head!

It was a year ago this week that things started to go so terribly wrong with Peter. I took a long trip down memory lane yesterday with a dear friend and recalled everything I could about Peter's journey from last year. It began with feeding issues. I remembered with Alana, that she made a big jump in how much food she took in somewhere between four and six weeks old. With the big intake of food, she also started being much more awake and alert. We kept waiting for Peter to make this same jump, but he never did. At two months old, he was still eating pretty much the same as a newborn. Because of this, he was also still sleeping A LOT - like a newborn. I remember thinking that maybe I was just comparing my two kids too much (something I knew no mom should ever do). Peter wasn't Alana. He would pick up his food intake in his own good time, not when Alana did it.

After a while of this train of thought, I knew something was still not right. I called the pediatrician's office and they suggested a gentler formula. So, Tom and I went to the store and bought new formula #1. The nurse told me that it would possibly take a good few days for Peter to adjust and for us to see an increase in his appetite. She said if that didn't work to try the soy-based formula. We tried the new stuff for a few days and there were no results. After talking with a few different people, Tom and I decided to go ahead and try the soy-based formula to see if that did the trick (new formula #2). Again, we gave it a few days and no improvement. I can specifically remember two different conversations - one with my mom and one with my good friend Denise. Both of them highly encouraged me to go ahead and make the decision to try Enfamil-Nutramigen (new formula #3). My mom said that I had needed that when I was a baby because I had had some of the same feeding issues. Denise told me that both of her boys had to be on Nutramigen and she could tell big improvements with their very first bottle of it. So, again off we go to the store and buy ANOTHER can of formula. I thought Peter seemed to do a wee tiny bit better on the Nutramigen and I thought maybe it would just take a few days for his feeding to really pick up.

Ever since all the events of a year ago, I've kept these three cans of formula that I bought over those two weeks before Peter was diagnosed. They've been sitting on the top shelf of my pantry and I've not been able to bring myself to throw them away. Silly, I know. But for some reason, they are such a visible reminder of those last few weeks of a little bit of "normal" before the bottom dropped out. It's almost as if they represent the end of our innocence. Anyway, I know I need to throw them away (they're probably starting to go bad), so I've decided to post a picture of them here and maybe that will bring me the closure I need:) Life was never and never will be the same as it was those first two weeks of February 2009.

Birthday Week

Tom and I celebrate our birthdays this week. I'm 33 today and Tom will be 39 on Saturday. We've laughed many times because our birthdays are so close together that we get "two-fers." One birthday dinner for the two of us, etc. This must be what twins experience:)

Anyway, I was pondering this morning on my 33 years. This is, after all, the age of Christ when He was crucified. It is a bit disheartening to think about my 33 years and what Christ accomplished in His 33 years. Although I believed in Christ as Savior at a very young age, it took me until age 29 to decide I wanted Him as Lord. So much wasted time! Why couldn't it have been different? Why couldn't I have figured "things" out much earlier in life? Why all the years of sin reigning in me instead of Christ? And then I realized......... The reason I have anything to count at all is because of Christ. My 33 years are so meaningful to God because Christ lives within me. When He looks at me, He doesn't see Kelli, He sees Jesus. Christ accomplished all that needed to be accomplished in His 33 years on this earth, that my life - whether a minute or 100 years - can count for eternity. Such a great plan of redemption!