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.