Observations From a Hospital Room

1. Hospital time is not the same as time everywhere else on earth. 60 seconds do not make a minute, and, "Oh, about 15 minutes," actually could mean any amount of time between 37 seconds to 2 hours, 49 minutes (give or take).

2. I wonder if there is a reason the hospital room toilet seat looks like the silhouette of a cartoonish clown face:

3. There are certain people, not many, but some, who cannot get beyond themselves and their own feelings to offer real support. They turn the whole situation around so that you end up comforting and supporting them through your difficulties. I wish there were a way to tell those people to bug off.

4. It's really, really, really important to remember the power of choice. For example, I wailed in a previous post about how my family has not eaten a meal at home together in 22 days. It begins to feel like we have to be at the hospital with Nathaniel. The fact is, we don't. A nurse told Lesley that she had to inform a married couple that their child had a severe illness, and would be in the ICU for at least 2 weeks. The nurse said that married couple then went on vacation for 2 weeks. They left contact numbers where they could be reached, but were out of state for the majority of their child's hospitalization. The fact is, we're at the hospital so much because we choose to take on that responsibility. I don't think anybody would consider us bad parents if we decided just "to take a night off" so that we could both be home together for a night. Nathaniel is important enough for us to make those sacrifices. Knowing it is my choice actually does make it easier to carry the burden.

5. In the hospital, boredom makes even the worst movies tolerable:

6. It was a really, really good idea to put a Wii in every room.

7. People do one of two things on elevators: 1) completely ignore you, or 2) talk to you as if you've been friends for years. (I'm not sure there is a middle ground between those two extremes.)

8. It's a lot easier to say that you believe God is taking care of you than to really, deep down, believe He is.

9. In those fleeting moments when you experience that deep down belief that God is taking care of you, there is "peace that surpasses understanding."

10. Staying overnight at the hospital with a loved one who is sick allows one to take a vacation from the reality of one's own powerlessness over the situation.

11. Hospital food really isn't that bad.

12. Sick people have touched the elevator buttons, too.

That's it for now. I may have more observations later. It looks like we may still be here for a while.

I Wonder If We're Capable of Making Any Other Type

Jacob at 1 week old:

Caitlin at about 6 weeks:

Nathaniel at 2 weeks:

A Gutteral Howl

I lost it the other night.

We had been told that Nathaniel would be able to come home with us on Thursday, 7/19. He had been recovering from the pneumonia that had wracked his little body since Thursday, 7/7, when his lung collapsed. They had reinflated the lung, but by Wednesday, 7/13, he had not made any progress in being able to wean down from the breathing machine.

They also noted that he had been losing blood due to natural attrition. Blood cells die after a period of time. He was not making enough blood cells to keep up with what is lost due to the natural blood cell life cycle.

They started a round of steroid treatments on Thursday, 7/14, that were to "kick start" his breathing and blood production. It worked. On Sunday, 7/17, the doctors told us that his breathing was sufficient to pull the breathing tube. His blood production picked up. Tuesday, 7/19, they told us he was looking so good that he would be able to go home on Thursday, 7/21.

Wednesday morning, 7/20, he developed an inguinal hernia. We were told no problem, fairly common in infants, docs had to deal with these all the time in newborns. He will be scheduled for surgery in 2 weeks. Hemophilia doc told us he would receive factor 8 (the blood clotting factor his little body doesn't make) infusions for 7 days prior to the surgery, and there wouldn't be any complications. We could still take him home.

On Wednesday afternoon, he spiked a fever. They took blood draws and realized he had a bacterial infection in his blood. The bacterial infection was caused by having been pricked, poked and IV'd so much that a bacteria got in. It is unrelated to the hemophilia, the pneumonia, and the hernia. The doctors came in around 9:00pm to tell Lesley what they had found, and to inform her that the treatment would be a minimum 7 day round of antibiotics given IV, which means that we would not be taking him home on Thursday. Lesley called me to tell me, because I was home with Jacob and Caitlin. We told each other that we loved each other and that we would make it through this, no matter what. We hung up.

Then I lost it.

My heart screamed at God. Inside, I was screaming things that I will never repeat in polite company. Anger. Frustration. Exhaustion. Loneliness. It all came out. A gutteral howl of pain.

About 1:00 in the morning, I wept myself to sleep.

The anger is still there. Deep down inside, I still feel it. I'm trying not to take it out on people, like lightening strikes. I find myself feeling angry everytime I pull into the hospital parking lot. I find myself wanting to blame people, the doctor who did the circumcision, the urologist who sent us home that first Sunday, the ER physicians who were trying to save his life but didn't even recognize that he needed blood, the doctors and nurses at the PICU, who have been nothing but excellent and supportive, but allowed my son to get an infection.

I find myself getting angry at the wonderful family and friends who want to support us. I want to howl, "LEAVE ME ALONE!!! You cannot possibly understand what this is like." I find myself wanting to howl at people who want to say comforting things that only sound hollow to me.

I'm just angry.

Is this grief?

I've lost the last 22 days of having my family together. I appreciate people trying to comfort me by telling me that my family is together in my heart. Bullshit. I want my family together in my home. My wife and I have not slept in the same house for 22 nights. We have not eaten supper together as a family for 22 days. We have not prayed together as a family for 22 days. We have not chilled in the living room watching Strawberry Shortcake while Jacob plays basketball on the fireplace for 22 days. I go 36 to 48 hours regularly without seeing my beautiful Jacob or Caitlin.

I'm tired. And I'm angry.

And right now, that's the best I can be.

Harry Potter: How the Movie Missed It

Spoiler Alert: if you haven't read the Harry Potter books or seen the last of the movies, I'll give away the endinng.

I'd like to begin by saying I love the Harry Potter series, the movies and the books.

I have to say, though, that I felt disappointed in the last movie. I felt they really missed the point. I don't really blame them. I think it's easy to get so focused on the idea that either Voldemort or Harry was going to need to die, that the true point was easily missed.

This is my disappointment.

At the end of the 7th book, Harry walks into the dark forest to sacrifice himself willingly and deliberately for his friends. Voldemort then has Hagrid carry the body out, where the final confrontation takes place. Before the final fight seen, Voldemort attempts to silence the crowds several times with a silencing charm, but for some reason, the charm just doesn't hold. Voldemort attempts to torture Neville Longbottom for his loyalty to Harry, but cannot harm him, even when he sets the sorting hat on fire on top of Neville's head.

Why were Voldemort's charms unable to hold the crowd or harm Neville?

Harry knows. Harry's mother sacrificed herself out of love for Harry, thus providing him with the protection that kept Voldemort from being able to harm him as an infant. Harry's willing and deliberate self-sacrifice out of love for his friends provided them the same protection. Because Harry died out of love for his friends, Voldemort's power was broken.

Ultimately, it became irrelevant whether Voldemort died or not. He could no longer harm those for whom Harry died. I wish this had been brought out in the film.

The Dark Lord's power was not broken because he died. The Dark Lord's power was broken because Harry died...for his friends...out of love.

I really wish that had been reflected in the movie.

I Believe God is Good

I'm not one of those Polly Anna a-holes who believes "everything happens for a reason." People like to say, God is letting this happen for a reason. If you believe that, please keep it to yourself. In the state I'm in right now, I might just punch you in the face.

People say, "Everything happens for a reason," in a feeble attempt to ascribe to God the crap that happens to them in their lives so they can feel better about getting crapped on by life. I don't really want to be the disciple of a God who gives little kids hemophilia and nearly causes them to bleed to death.

No. Sometimes, shit just happens.

So what do I believe about the goodness of God?

I believe that God knows everything, and since he knows everything, he is able to put things into place that make us able to get through anything, "without men's every discovering, from beginning to end, the work which God has done" (Ecclesiastes 3:11b).

For example, the night we had to rush Nathaniel to the hospital, Lesley was completely exhausted, but "something" inside of her kept nudging her to keep her from falling asleep.

For example, Lesley and I found out that the team leader of the transport team (who was the first to recognize that Nathaniel needed blood) was the most experienced, most qualified, and most respected member of the entire transport staff.

For example, years ago, Lesley was taken by her family to a general practictioner, who eventually became our children's doctor. He will be Nathaniel's primary care doctor, too. This family doctor, our family doctor, has hemophilia.

For example, God has surrounded me and Lesley with family, friends, coworkers, club brothers, and a host of other people who offer so much support and kindness to us.

God didn't want Nathaniel to get hemophilia. God didn't want Nathaniel to bleed almost to death literally. God didn't want Nathaniel to get pneumonia. If you have to ascribe a reason for Nathaniel's illness, then the reason is original sin. All of these are the result of that original sin that separates all humanity from God. If we were in perfect union with God, Nathaniel would not be sick.

Nathaniel's illness is a result of the original sin. All of the good things we have experienced since finding out about Nathaniel's illness are gifts from God to help us through Nathaniel's illness. God was at work, even years ago when Lesley was still a child, putting things in place that will help see us through this. That's the goodness of God.

God cannot take away the cross. Suffering in this life is the result of original sin. So what He did instead was even more wonderful. He made the cross, suffering, our doorway to unity with Him, where there will be no more suffering. And he puts those people in place, the women of Jerusalem who comfort us, the Simon of Cyrene's who help us carry the burdens, and the Roman centurion's and the good thieves who tell us that they believe in us, to help us through the cross to the resurrection that awaits us on the other side.

It's Good Friday right now. It's hard. It's very hard.

I'm comforted by two things:

I am not alone. God is there, and so are those whom He has placed.

And I know Easter Sunday is coming.

In Sickness and In Health

Jacob can be so funny.

Last night he was eating some waffles as a mid-evening snack (I am in the running for the Father-Of-The-Year award, and I'm pretty sure it's determined by the vote of the children?). Mouthful of waffle, he looks up at me and says, "Dad, I just don't know very much about you and mom's wedding."

I said, "Well, you were there. Don't you remember it?" He was nine months old.

"No, not really," he said, "maybe a little bit but not very much".

"I think we have a DVD around here somewhere of our wedding. Do you want to watch it?" I asked.

"I think I'd like that," he said, wrinkling his brow, thinking about it deeply. So we dug around until we found the DVD Lesley's aunt made for us, and watched it before bedtime last night.

I had forgotten that on our wedding day, I was sick. I had one of the worst cold's of my life. My voice was scratchy and crackly. I had difficulty breathing. Lesley gave it to me as an early wedding present.

It occurred to me as I watched myself say those words, "I promise to be true to you in sickness and in health," that the wedding vows really don't stipulate specifically who is sick.

I think often we hear those words (or speak those words) and interpret them to mean that we will care for our spouses whether whether they are sick or healthy. We are called to be just as true to them when we are the sick ones. What if it were Lesley's mother or father, or my mother? My vow is no less in force.

I'm sitting in the hospital room with Nathaniel, who is up and down. I am called to love my wife through his sickness, too.

I'm not sure exactly what that means right now, because I don't know how Lesley is going to need to be loved through Nathaniel's illness.

Isn't that part of the adventure? What an act of faith! Lesley believed me when I told her I would love and honor her all the days of my life. It's a good thing she didn't know on that day that I don't have the slightest clue how to do that. The other fact is, I'm very lucky, because Lesley is pretty good at letting me know how.

Ultimately, marriage is the beginning of the grand adventure. When husband and wife pledge those vows that day, they don't know what the future is going to bring. There's absolutely no way that I could have predicted having a child be as sick as Nathaniel is. But that's ok. My promise holds, and so does Lesley's. We will be true to each other, love and honor each other, in good times and in bad, for richer, for poorer, in sickness and in health, all the days of our lives. We will teach each other how to love each other for the rest of our lives, and through anything that this beautiful, funny life might throw at us.

And that's very comforting to me.

The Whole Story

This is more for my benefit than anyone else's. I've often found writing things out to be therapeutic.

Day 1: Thursday, June 30, 2011
Lesley said she had been having contractions nearly all afternoon, but didn't make a big deal of them. She actually saw our Ob/Gyn (who coincidentally is the wife of the doctor who would circumcise Nathaniel a few days later). Lesley told me that the Ob/Gyn was going to check on any dilation in the cervix, but stated that the cervix hadn't dropped at all, and so didn't bother.

After the appointment with the Ob/Gyn, Lesley and I went to pick up the kids. We went home, changed clothes, and took the Jacob to his swimming lesson. Before the swimming lesson, we ate supper at the Pizza Haus on McCarty. Swimming lessons over, we went home, gave the kids baths, and got ready for bed.

First I put Jacob down to bed. He goes to sleep by himself, but I usually lay with him for 5 or 10 minutes before letting him drift off. We small talk about the day and whatever is on his mind.

While I'm laying down with Jacob, Lesley usually lays down with Caitlin, doing the same. Girl talk and lots of giggling come from Caitlin's room. I went to bed and fell asleep by about 9:45pm. Lesley came in and I felt her get in bed with me about 10:10. 10:15, she rolls over at taps me on the shoulder, "Honey?"

"Yeah," I respond.

"My water just broke."

Race was on. Lesley got up and got herself and her stuff together. I went and got Jacob out of bed. I told him that we needed to go the hospital because Baby Squirt was about to be born. Jacob asked what was going to happen. I told him that Mima and Papa were going to meet us at the hospital and be with him and Caitlin, while Daddy and Mommy brought Baby Squirt into the world. He started rocking back and forth in his car seat, squeezing his hands into fists and kicking his legs. "I'm so excited," he said, "I get to see Mima and Papa."

Caitlin slept through it.

We got the hospital and Mima and Papa arrived. My mom, whom the kids call Mammy, came, too. They took Jacob and Caitlin out into the waiting room.

Lesley's Ob/Gyn came in, shocked that we were there since Lesley had just seen her earlier that day. The doc asked if we were ready to have a baby. I said, "Ready or not, here we go." Lesley asked if we could wait until July 1. The doctor just stared at her. Lesley explained that one of her best friends' birthday is July 1, and she would like to wait, if she could, so that the baby would be born on her friend's birthday. I explained that Lesley just really wanted the child's birthstone to be a ruby. Lesley stated this was an added benefit, but not her primary motivation. Well, the docs and nurses took their time, and eventually came and got Lesley to take her to the Operating Room.

I eventually got called into the operating room, where they had Lesley laid out like Jesus on the Cross, arms out stretched. They hung a curtain up across her mid-section. At 12:01, they asked, "Would dad like to tell everyone the sex?" I figured this meant they already had the kid extricated from Lesley's innards.

Nope.

I peaked over the curtain and the kids was shoulder deep in my wife. I got to see something that was slightly traumatizing, my child being pulled out of my wife. I quickly shouted, "It's a boy," and sat back down before I fainted.

Nathaniel was born at 12:01 am, July 1, 2011. By all outward appearances, he seemd perfect. When they took him to the nursery, I followed him as they stitched Lesley back up. In the nursery, the doctor and the nurse did the preliminary examination. "Perfect," the nurse stated. "Crap," I responded, "If he's already perfect, he's got nowhere to go but down." I was joking when I said that. Now it seems strangely prescient.

We finally got back to the room around 1:30 in the morning. Lesley's mom and dad took our kids with them to their house. My mom went home. Everything was awesome.

Caitlin slept through it.

Day 2: Friday, July 1, 2011
Nathaniel was perfect. We had a few visitors. People were very kind to wait to visit after Lesley had just had major surgery and needed rest. Uneventful, perfect first day with our son.

Day 3: Saturday, July 2, 2011. Started out wondefully.

Jacob and Caitlin and I spent the morning at the hospital. Around lunch time I took them out to get them something to eat and let them blow off some of their young, restless energy. While I was gone, about 12:15, the doctor came to get little Nathaniel for his cirumcision. About 45 minutes go by, and Lesley asked the nurse how things went. "The doctor will be coming to see you in a bit," was the only response she received. Of course, that set her mother's intuition into high gear.

1:30, still no response from the nurses.

2:30, no response.

About 3:00, Lesley goes into the nursery, and demands to be told what's going on. The doctor informed her that he had circumcised Nathaniel, but wasn't able to get him to stop bleeding from the circumcision site. They had decided to call the Women's and Children's Hospital in Columbia, and have him transported there where there would be pediatric specialists who would be able to manage the situation more competently than the they could.

Lesley called me. I had just returned and was pulling into the St. Mary's parking garage when the phone started ringing. She told me what was going on. We called, once again, her parents to come and get our children.

Lesley demanded that she should be discharged so that she could go with Nathaniel to the hospital in Columbia. They discharged her. However, the transport from Columbia would not allow her to ride in the ambulance with Nathaniel, so Lesley and I followed in the van, sometimes at speeds around 100 mph, in order to be there when they took him off.

They took him to the Emergency Room rather than the pediatric unit. A urologist arrived, who I have come to distrust inherently. She put stitches into his penis where the circumcision site was, and the initial evaluation showed that the doctor who did the circumcision had knicked a vascular gland. Because the head of the penis is such a vascular area, it caused excessive amounts of bleeding. The uroligist was ready to discharge us that evening.

Providence intervened. (That happens a lot during this story.) Lesley had tested Group B Strep positive, and the normal treatment for children who are born to mothers who are GBS positive is to observe them for a full 48 hours after birth. Well, because 48 hours would not be up until 12:01 am, July 3, they decided to keep him over night. They continued to repack the gauze, but never gave him a transfusion. They said they had slowed the bleeding to the point where it was no longer a threat to him. They sent us to a floor on the pediatric unit where we spent a very peaceful evening.

Day 4: Sunday, July 3, 2011

The morning was uneventful. We were told about 10:30 that Nathaniel would be discharged and we could take him home about noon. Noon came and went, and there we sat. The nurses continued primary care of him, but taught Lesley and I how to apply the vaseline seal and wrap him in the diaper to minimize the ongoing bleeding. Finally, at 3:30 in the afternoon, we walked out of the Children's hospital.

We arrived at Lesley's mom and dad's house to pick up Jacob and Caitlin. We changed Nathaniel's diaper about 4:30. There was some blood, but we were told to expect that. Mima held him after the diaper change. About 5:00, we decided to head home. When Lesley took him from her mother, Nathaniel had bled through his diaper, clothes, and basically covered the front of Mima's shirt with blood.

We didn't know what to make of it. My guess was that he peed, and because there was some blood, his pee had turned red because of the blood. Nathaniel's color was still good. He was still responsive. We changed his diaper, packed the vaseline gauze the way were told, and went home.

About 7:30, another diaper change. More blood. We packed the vaseline gauze the way were taught.

About 10:30, another diaper change. More blood. Except now Nathaniel was feeling cold to the touch and looking a little pale. We packed the vaseline gauze, put warmer clothes on him, and wrapped him tight in a warm blanket. Jacob was mis behaving pretty badly, so he had to go to be by himself that night. No daddy to lay there with him. Instead, I laid down with Caitlin and Lesley, who was totally, physically exhausted, laid down with Nathaniel.

I fell asleep in Caitlin's room with her.

Lesley, despite being totally exhausted, just couldn't seem to fall asleep. Another moment of divine meddling.

At midnight, Lesley came and woke me. "Will you come and look at Nate?" she asked, "Something's wrong." I went and looked at him.

Terror.

I've been with people as they were dying. I knew beyond any shadow of a doubt that my son was dying. His skin had turned snow white. His breaths were shallow and rattling. He was non-responsive, even to a pinch, and his eyes seemed to role into the back of his head when I would force them open. I knew my son was dying.

We called the emergency number we had been given for Women's and Children's Hospital. The nurse who I spoke to the first time told me to call the pediatric unit, and gave me the number. So I called that number, and got an automated answering machine. I cursed, and called the emergency number again. A different nurse spoke to me this time and I described Nathaniel's condition. She only confirmed what I already knew. We needed to get to the ER as quickly as possible.

I told Lesley to call her parents to come to the house to take care of Jacob and Caitlin and to get her things together. While she did this, I took Nathaniel into the bathroom and baptized him. I didn't want Lesley to know that I knew our son was dying, so I didn't tell her what I was doing. When we came out of the bathroom, Lesley asked what I was doing in there. I told her, "I baptized him." I gave him to her to hold at that moment. (For my reasoning behind having his mother hold him, see my blog below, Song of Songs 8:6.)

Lesley nearly fell down she began crying so hard. Lesley's parents arrived shortly after. Lesley asked if we should put him in his car seat. I said, "No, you hold him." Again, see my earlier post about that.

We rushed to the hospital, again, I was driving easily close to a 100 mph to get there. We arrived and the receptionist began walking us through the process of registering. At that point, a nurse peaked through and saw Nathaniel. She walked out, felt him, searched for his pulse, and said, very calmly, "We can finish this later, you come with me."

We went to the ER and within 15 seconds there were about 20 medical people gathered around our son. One of the nurses stepped back to us and asked us if we would like them to call pastoral care.

I cannot describe in words the stress of that night. I'm not even going to try.

I will say this, the normal body temperature is 98.6 degrees. Fatal body temperature usually is considered around 86 degrees (that' when the brain starts shutting down). Nathaniel's was 90 degrees. A hemoglobin count measures the number of hemoglobin proteins in your body that carry oxygen. A normal count will be above 10. 6-8 is considered critical. Less than 6 is considered fatal. Nathaniel's was 3.9. Hematicrit measures the amount of oxygen actually in your blood. A normal range is 31-55. 31-26 is considered critical. Less than 26 is considered fatal. Nathaniel's was 10.

By the numbers, Nathaniel should be dead.

Eventually, the transport arrived. The leader of the transport team, Louise, whom they called, "Weezie," took 1 look at Nathaniel, and in a kind of a "Well, duh," tone said, "This kid needs blood."

They gave him a transfusion of 25 cc's of O negative blood there at St. Mary's. It was like magic. His color turned pink. His eyes opened and he looked around with a "What the hell's going on now?" kind of look. He became responsive to pain.

They wrapped him in cellophane (I kid you not) to preserve his body heat, the little he had. His temperature at the ER was 90 degrees. We were rushed to pediatric ICU at Women's and children's, and arrived there right about 12 hours from the time we were discharged.

They gave him another 25 cc's of blood (which is the appropriate "unit" of blood for a baby of his weight). They continued to work on him until about 5:30 in the morning. They finally turned to us and said, "He's going to make it." I immediately offered, from the deepest part of my being, a prayer of thanks to God for sparing my son, and sparing me the sacrifice I thought he was calling me to make (blog: A Father's Love).

Day 5: Monday, July 4, 2011.

Lesley and I slept for about 2 hours. We awoke to find him receiving another 25 cc's of blood. He was intubated at this time. The doctor's stated that all indicators pointed to the fact that he had a blood disorder, possibly hemophilia.

We spent a lot of time that day praying, watching, waiting, doing nothing.

It was about 7:00 pm that evening when the Pediatric Resident physician came and confirmed to us that Nathaniel did have hemophilia.

He asked if we had any questions.

I couldn't help but laugh. Questions. Where do I start? Maybe with, "Why the hell did you people discharge him on Sunday when you knew that his blood count was off and there were some screwy numbers in his indicators?"

I sat there stunned.

Day 6: Tuesday July 5, 2011

Nathaniel received his first infusion of "Factor 8", the clotting factor that his little body does not make.

When a healthy person gets a cut, a series of dominoes get knocked over. Each of those dominoes is called a "Factor". When they have all fallen, the blood clots, a scab forms, and the person stops bleeding and has a protective, natural "bandaid" over the wound.

Nathaniel's body does not produce (or if less severe does not produce enough) of the 8th of those dominoes. That means when he gets a cut or a bruise or a high impact injury, the clotting process starts. When it reaches the 8th domino, however, the process stops, because he is missing Factor 8. Nathaniel's hemophilia does not cause him to bleed faster than anyone else, but because his blood does not clot to form the scab, he doesn't stop bleeding. As the events of Saturday and Sunday attest, he will eventually bleed out and die, unless some kind of intervention is provided.

The wonder of science is that they have been able to isolate each of the dominoes, each of the factors, and can give Nathaniel infusions of the specific factor his body is missing, which in turn allows the process to continue.

This day was pretty uneventful. Adjusting to the knowledge that Nathaniel has hemophilia was easier for me than it was for Lesley. My attitude was, now that we know, we can plan. It was the not knowing that was so painful to me. I knew, even before the hemophilia specialists told us in our first visit, that it would be important to help Nathaniel lead as normal a life as any other child. Protecting him in a bubble would only hurt him worse than the hemophilia in the long run. I made a lot of jokes about him not being able to ride a motorcycle, get tattoos or body piercings someday. Lesley took to those ideas fairly easily.

We met the hemotologist with whom we will be working through the Hemophilia Treatment Center, heard about the different types of hemophilia and different severity levels. We learned that it would be a month before they would run tests to determine Nathaniel's severity level, because he had the transfusions. It's necessary to make sure that he has processed the blood that is not his and it is out of his system before running tests. If we're going to know the severity of his blood disorder, we have to make sure that we're testing his blood.

Day 7: Wednesday, July 6, 2011

More adjustment and learning. Pretty uneventful. The doctor was even discussing the possibility of moving Nathaniel to the regular pediatric unit the next morning.

Day 8: Thursday, July 7, 2011

Early in the morning, before dawn, Nathaniel started to struggle. His blood oxygen saturation number was dropping regularly. It would drop; the nurses would come in, and give him a higher percentage of oxygen in his air. He would improve for a little bit, then it would drop again and the cycle would repeat.

They decided mid-morning to give him a a stronger air support, so they put him on what was called a high flow with a long pronged cpap. It helped. For a while. The cycle continued, and pretty soon he was up again to receiving 100% oxygen through the cpap. The doctor came in around noon to tell us that Nathaniel had developed a bad pneumonia, and that his right lung had collapsed. The collapse of his lung had created a vacuum in his chest, which caused his heart to shift to the right side of his chest, rather than center left. The doctor also explained that Nathaniel's heart rate, due to the stress of breathing and the shift, had spiked several times, which led to the fear that he may have a cranial hemorrhage, or bleeding on the brain. This is common in severe cases of hemophilia when the hemophiliac is under high physical stress, as Nathaniel was.

Worried sick.

The doctor said that they were going to reintubate him with a tracheal tube into his lungs, and that they would begin a process that would take several days of sucking out the mucus and fluid (affectionately known as gunk) and reinflating his right lung. The doctor said that by reinflating the lung, the heart would move back into the correct position.

When the process was over of reintubation and the first gunk extraction, they did both a head ultrasound and a chest ultrasound. The chest ultrasound came back fairly quickly. Strong heart, no internal bleeding. It would be ok once the lung was reinflated.

Lesley's parents were there, and we played cards in a feeble attempt to get our minds off the possibilities. Finally, around 7:00 pm, the doctor came in and told us that there was no bleeding in the brain. Thank you, God, again.

We went to bed that night knowing that, IF NATHANIEL SURVIVED THE PNEUMONIA, there would be no permanent brain or cardial damage.

Day 9: Friday, July 8, 2011
More watching and waiting and learning. Learning about hemophilia. Watching Nathaniel's progress in very small increments to a healthier lung. And waiting for his little body to do what they wanted it to do.

And here we are, at the end of day 10, Saturday, July 9, 2011. And we are still waiting and watching. This is the mode we will be in for the forseeable future. Nathaniel has to determine the progress at this point. He is out of the woods. He is not currently in danger of death, but that doesn't mean that he won't be if the pneumonia strikes back. His lung is looking for more clear each day. We saw an X-ray of his chest, and his heart has moved back to the center left position. Please no political jokes about that.

It is a miracle that Nathaniel is even still alive. I know that it is due to all the prayer warriors out there who have been storming heaven on our behalf. The doctors and nurses at Women's and Children's have been so kind to us. They keep saying, "Now I know there are other places you'd rather be."

I respond, "Maybe, but I would rather NOT be at my son's funeral."

Anyway, there's the whole story. Thanks, it helps getting it off of my chest.

A Father's Love

I hope that no one took my words wrong in my previous post, believing that I was suggestng that as a father, I am not bonded to my children, or worse, that a father does not love his children. Nothing could be further from the Truth.

The Truth is, I cannot love my children the same way as their mother. But I'm not supposed to.

If a father's love and a mother's love were the same, then God would not have "created them male and female." We would all be the same gender. No, instead God created us "in his image, male and female he created" us. The father plays an essential, complimentary, and no less important role to the mother.

As a father, I will always be the outsider, the other in the trinity of the divine institution of the family, Father, Mother, Child. That's because God is the Other. The father is the image of God the Transcendent, who is outside of us, watching over us, protecting us, looking at the big picture.

A mother, on the other hand, is the image of God the Intimate, who comforts us, holds us, is within us, and nourishes us.

In the events that took place this last Sunday evening with Nathaniel, as a father, I had a very important role to play. As I held my son under the baptismal waters, I was Abraham sacrificially giving my son back to God. (Thank God, like Abraham, God spared me that sacrifiice.) As I drove to the hospital, as Lesley was holding my son (and I believe holding his soul bound to hers), I was praying, "Lord, into your hands I commend his spirit." Because I am father, I am the one called to give him up in sacrifice, or at least be prepared to.

Please don't take these words in the sense that I did not want my son to live. King David prayed through fasting and sacrifice for the life of his son. The child died anyway. King David rose from his prayer, bathed, and ate. When asked why he acted this way, he replied that God had seen fit not to answer his prayer, so what more should he do? This seems callous, but it's actually an image of a father who accepted the will of almighty God. That is my love as a father: to always be willing to obey God even to the point of sacrificing that which I hold most precious to me. Joseph, the husband of Mary, sacrificed his ancestral home, his livelihood, his own security for the sake of Jesus.

Another role I have as a father is to sacrifice myself for my wife, so that Lesley can fulfill her very special role of being the image of God the Intimate. What I wrote earlier was a celebration of that special vocation of hers as Mother. If I approach her relationship with jealousy over her place in my children's lives, I poison myself, my relationship with her, and my relationship with my children. So instead I celebrate her intimate, nourishing, life-gving bond with our children.

In the same token, Lesley should and does sacrifice herself for me so that I can perform my role as a father in the image of God the Transcendant. And believe me, she celebrates my transcendant, protective, life-giving role in our children's lives.

In the whole thing that went down Sunday night, Lesley and I each did our part as the image of God to which we are called by our vocation in marriage, equally, complimentarily, generously, stressfully, and most importantly, faithfully.

Song of Songs 8:6

A hemoglobin count measures the number of hemoglobin proteins in your blood that carry oxygen. Normally, a hemoglobin count of 6 means death. On Sunday night when we arrived at the ER, Nathaniel's was 3.9.

His body temperature was 90 degrees.

The doctors told us that bascially he had bled out so much that the only parts of his body that had oxygenated blood were his brain, his lungs and his heart.

When I was a priest, I was with people when they died. I know what death looks like. When Lesley came and got me on Sunday night and asked me to look at Nathaniel, I knew he was dying. I knew it with as much conviction as I know that I'm sitting here typing this. I honestly believed he would not survive the ride the 5 miles from our house to the emergency room.

We called Lesley's parents to come and watch our children, and Lesley began to prepare things to take to the hospital. While she was doing that, I took Nathaniel into the bathroom, and I baptized him. When I came out, I gave him to his mother to hold him.

Lesley's parents arrived. As we were getting into the car, Lesley asked if she should put him in his car seat. I said, "No, you hold him." She held him all the way to the hospital.

In my heart, I know that is what is saved his life.

Song of Songs 8:6

Set me as a seal on your heart,
as a seal on your arm;
For stern as death is love,
relentless as the nether world is devotion;
its flames are a blazing fire.

There is a bond that exists between a mother and her child, a love that grows between them and within them just as real as the body that grows in the mother's womb. This bond of love is strong as death, relentless as the netherworld.

I think Lesley, by holding her son, kept his soul in this world.

The love that a mother and her child have for each other is a spiritual reality. It cannot be comprehended cognitively. It cannot be touched or understood empirically. It can't even be felt emotionally. It is a spiritual reality, too deep for our feeble human senses to comphrehend.

I believe that Nathaniel could see the Angel of Death beckoning him on Sunday night. I also believe that between them was a force, stern as death, just as powerful, that kept Nathaniel from heeding that call, Lesley's love for him and his for her.

My son is alive because of his mother's love.