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.