Tour Update

On your mark...

Get Set

He's almost ready to go. Does this look like someone who is interested in crawling? This isn't a developmental thing so much as a tempermental thing. He's got the strength of a toddler and the energy of a small nuclear reactor. That's why I can't wait until next week. Next week is the next stop on the Party Pooper Tour '08. This next stop will take us to NYC and the lovely Pocono Mountains. While there I plan to enjoy other people holding onto the baby that loves to kick and hates to sit. I will enjoy watching his aunts' shirts be ruined. I will relax in a world class restaurant while Aunt Toni bathes the boy who does not stop splashing. I will drink cocktails with my wife while Aunt Traci feeds Jordan and Jordan tries to help while using his hands to grab pureed carrots. Some may call it a family reunion, but for his parents it will be a semi-vacation. I even got granddad to take pictures. OK I confess, I couldn't stop him if I tried. He has already finished half the video he is making for the trip that hasn't occured yet. The family has a pool for when the video will be finished and emailed to the parents. Granddad returns from the trip around dinnertime Monday. The pool currently is predicting that the odds are he will finish the video and email it before 8am Tuesday - 10am if he sleeps first.

PS - if anyone ever needs or wants to see the birthday montage again, I have moved it to the bottom of the screen.

Flipping the Script

Someone has decided to flip the script. Jordan is not a fussy baby, but like all babies he has likes and dislikes. He can balance on all fours and will do so if we put him in that position. However, after about 30 seconds he either lies down or asks to be picked up. He doesn’t seem to be interested in being on all fours at all. Now standing up is the real fun. Stand him up and let him lean on a table or chair and he loves it! He will laugh and hit and have a jolly time leaning on the coffee table. I am going to get a video of it this weekend – it is too cute. He can’t stand up without holding on, but sometimes he acts like he can get up and walk. Of course the problem is that if I were a betting man I’d say he walks before he crawls. He definitely has the strength and this kid only wants to go full speed. Plus he doesn’t like being on all fours. It’s hard to eat stuff when you can’t use your hands.

He has also started down a very dangerous path. He has started to play with his electronic toys. He doesn’t just hit them anymore, he uses them properly to make noise. He has not only figured out cause and effect (finally), but he realizes that electronics are fun when they make noise and light up. I think he might grow out of it eventually, but judging by the new GPS in my car it will take at least another 30 years. I think a couple of months ago the mama Ali switched my baby for a toddler. He wants to stand up even though he can’t yet. He plays with his battery powered toys. He waves good bye. He plays with himself during diaper changes. If he gets hungry enough he holds his own bottle. He loves to spit all over his parents. He’s becoming a little boy right before my eyes.

Milestones

Before

After

We have been reading him this story at least once a week for all of 2008, but he found it really funny this time. He has really started to laugh a lot more at a lot of stuff. He is a very happy baby, but he is also very very energetic. He is catching up to his actual growth chart, but he is still at adjusted development. He wears 12 month old clothes, fills 12 month diapers (Yikes), and has the energy and strength of a 12 month old. However, he developmentally doesn't have the balance. Imagine holding a 1 year old in your lap who is kicking you to get free. The problem is he can't walk or even crawl yet so if you put him down he's just going to lie there and taste the carpet and dogs. He thinks he can crawl, but he only sits when you out him down. I have no idea how I will be able to keep up with him later this year.

He is starting to interact with people in a very special way. He waves! I don't have it on video yet, but when other people wave at him he waves back. It's really cute for two reasons. First, he can only do that toddler fist thing. He waves by opening and losing his fist. Second, he is still working at it so he has to really pay attention when he waves. He doesn't look at the person he's waving at because he stares hard at his hand. Opening and closing his fist takes all of his concentration still and he looks so cute when he stares at his hands. I am going to get a video and try to post it next week.

Monday July 9th, 2007

By now I am used to nurses coming into the room in the middle of the night. They frequently come in for vitals and medicines as necessary. They always inadvertently wake me up as well. This time is different however. This nurse came in at 2am and is still here after half an hour. I have to go to work tomorrow and this nurse doesn’t seem to care. I later find out that she wasn’t there for vitals, but rather because the monitor was showing some patterned activity at regular intervals. She doesn’t leave until well after 3am. How incredibly rude of this woman to do her job while preventing me to get enough sleep so I can do mine. If an accountant doesn’t get enough sleep he can add wrong. What’s the worse that can happen if a nurse doesn’t do her job (To all you nurses, I’m kidding of course).

When I finally do get up at the proper time I get to do something I haven’t been able to do at any hospital thus far. We have our own bathroom complete with a shower! If this room did not have a shower, I would have had to go home last night, but thank goodness for small miracles. They probably charged me $5 dollars for the soap I used one time, but it was worth it. Soon it is time to tell the mama Ali goodbye again. The drive from Jacksonville to the house (I work near the house) is over an hour without traffic. The drive isn’t even the worst part, but gas is approaching two and a half bucks per gallon! That’s as much as a subway token – if this city had subways! In my mind I am not 100% sure if I am coming back to the hospital today. I’ll worry about that later. The last thing I tell her is to remember what I want for my birthday – nothing. I go straight to work. She calls me around lunch.

Ever since before we met, I wondered what my reaction would be when I got the call that the baby was coming. I never imagined that the main emotion would be dread. She says that according to the doctor the baby is still in the sac, and has stuck his foot out of the cervix without breaking the sac. It isn’t happening now, but it is happening today. In my mind I think ‘Push the foot back in!’ By now when I walk into my boss’ office with tears in my eyes he knows I have to go. Later I would feel terrible about missing so much work, but I also know that if he hadn’t let me go I would have quit in a heartbeat. I have to get back to Jacksonville – even if they charge me $3 per gallon!

I run to the house and pack my bag. I won’t be back until I’m a father. I’m a father. It made me so sad that it actually hurts to even think it. I start to cry again. This is so unf- who is calling me now! Two of my friends are calling to wish me a happy birthday. They start singing the song and they get halfway through before I cut them off. I am abrupt about it, but after I tell them why they understand. I know that for the rest of my life – good or bad – I will never celebrate July 9th as my birthday again. The drive to Jacksonville takes twice as long when you are afraid. As I would learn over the summer when you are afraid of death that drive never seems to end. I might have gotten there faster if I could just stop crying. I don’t know when it happened, but at some point I convinced myself the doctor was wrong. He was wrong and/or lying. The first doctor was wrong when he said she couldn’t last the weekend. This one must be wrong too. Or maybe he’s mistaken. The foot isn’t sticking out – it’s just the umbilical cord. The sac has somehow stretched thin and let a bit of the cord out. I’m just upset now. How could this idiot make a mistake like that? The baby is fine. We’ve already done 11 days, we can do another 11 easily. Friggin quack.

By the time I get to the hospital, we do the hand off. My in laws have been there all day. I get the evening. I want to see the doctor and give him what for, but I decide decorum is the better part of valor for now. I sit down with my wife and we look at each other for a few seconds. I think of everything she has worked for for the last 11 days and how she has so many more days to go. I feel…OUCH!!! We were holding hands and getting all emotional and she squeezes my hands like she’s mad at me. She’s never squeezed so hard. I look from my hand to her face – oh shit. Her eyes are closed. Her breathing is deep and rapid. There is a tear out of one eye. This is a textbook contraction. No one mentioned contractions. My wife is in labor. I look at the pain on her face and I finally, totally, and without reservation know that it is a matter of hours before we become parents.

No one ever mentioned any symptoms to me before this. All I received was one phone call from a woman who was probably in labor when she called. Her body was betrying her heart and mind after 11 days. I never found out for sure that the foot was sticking out, but it no longer mattered. Contractions were 15 to 20 minutes apart and by the time I arrived she was dilated past 6cm. More than enough for a 20 ounce baby. When the doctor finally checks on her again I forgot I was ever mad. This man was our only hope, but hope was the one thing he could not offer us. He asks which method of delivery we want. With c-section, when the baby is pulled out he could get his head bent back too far. Not a problem with 6 pounders, but at 1 pound and not many fused bones in his neck, it would be instantly fatal. With vaginal birth he could get his head caught in the womb while being… You know what? The doctor essentially asked us which way we want the baby to die. The odds were in our favor but as we would hear about everything between now and labor day, his size meant the odds were not good.

The most important thing now was to get the 2nd shot of steroids. If the baby came early, then so be it. However, the shot had to be given no earlier than 7 pm and should be given at least another hour after that to work its magic. We just have to hold on for another hour before we can even get the shot. Right now we just have to labor through it. As a man I won’t pretend to know how hard it was for her, but for me the next hour was the longest hour of the entire time in the hospital – even longer than the hour I drove to get up to the hospital. It was active labor and her body was contracting. There was no way to stop it and I know that she was fighting it with every ounce of strength she had. This wasn’t supposed to be happening to us now.

By the time 7pm rolls around we finally get the shot. I still don’t remember where it was, but it wasn’t the belly and the needle was big. Then it was time to relax. Except in this case relax means to lie in bed in complete fear while your body is in active labor. My job is to do a little bit of everything. I have to hold hands, but I also have to get her a drink of water which is on the other side of the bed. I have to wipe down her forehead. I have to call the nurse. I have to do it all at the same time. I am totally ok with it because I would much rather be going through the emotional pain rather than the physical and emotional even more. The mama Ali has wanted to be pregnant for the longest time. I think she was looking forward to pregnancy before we even met. She felt that it was her fault the she was in the hospital. That it was something she did wrong. Now she was in labor and she felt it was also her fault. It took me weeks to convince her that this wasn’t her fault. In fact, this whole thing started with her feeling bad and going to see her OB for an emergency appointment. I know within my heart that if the situation had been reversed I would have tried to tough it out and not gone to see the doctor. In that aspect it is her fault she is in the hospital in labor right now, because if the situation had been reversed it probably would have ended as a miscarriage at home a week earlier.

My sister in law Liz arrives soon to help but I am not leaving the mama Ali tonight. She wouldn’t let me if I tried. However, we start to settle into some sort of routine for the next hour or so. Then we are to receive the epidural. I am glad to see that we are getting the doctor and not an assistant for this procedure. However, things do not go smoothly. Over the last 11 days my wife has been poked, pinched, stuck, and shot more times than you can shake a stick at. Now she has to get another series of injections directly into the spine. Let’s just say that she was relieved when the epidural was finally over. There was no epidural for the emotional pain.

Too soon the nurse does her final exam and calls the doctor. There isn’t full dilation yet, but there doesn’t need to be at 23 weeks and 3 days. She notifies the doctor and it is decided that it is time for the pregnancy to end. We are in line to deliver the baby. There are some people in front of us and as we can (and should) wait longer to deliver, we are given time before we go into delivery. As the husband, I am given scrubs to put on. Then the 3 of us are left alone in the room. There’s nothing to say so I don’t even try. Fear, shame, excitement, anger, grief, it’s all good, and it’s all there. In a few minutes it’s time for the parents to go to the operating room. The new aunt gets left behind.

To this day I don’t know why they had us in an operating room when I remember clearly there was no surgeon at all or surgical tools that I could see. There was our OB, and two assisting nurses. There were also 3 nurses in the back of the room standing next to a door. That door led to the NICU. The operating room was filled with other weird machines and contraptions, and for some reason a computer with a keyboard. The doctor finally breaks the infamous amnotic sac and starts to work but it becomes apparent that the epidural needs to be turned up. While we wait for that doctor to arrive, we are all left kind of standing around. The OB can’t do his work, there are five nurses for the baby who can’t do anything, even I can’t do my coaching. I figured coaching would be taught in one of those classes that people take in the third trimester. Maybe next pregnancy. Within a few minutes I confess my attention begins to wander and I start looking at some of the machines and wondering what they do and how they do it. The mama Ali makes clear her disapproval and I snap back to attention. Soon the other doctor comes and turns up the drip on the happy juice and it’s finally time. I have lived 30 years, and been married 6. I have had some intense fights with my father, had some real wars with my sister, and even fought with my bride all day on our wedding day. The most difficult and painful words I ever had to say in my life was when I had to lean over and tell my wife after 23 and a half weeks of pregnancy, “OK baby, it’s time to push.”

Pushing did not last too long as I remember it, but the person pushing might have a different opinion. I do remember that the doctor cut the cord before the baby was all of the way out. I do remember that the doctor made no pretense at showing us the baby or congratulating us. I do remember hearing a cry as the doctor handed him to the nurses who immediately ran from the room. There was no placing the baby on momma’s belly. No wipe down of the afterbirth. No measurements. The baby would be able to take two or three breaths on his own and then suffocate without help. I would not hear the baby cry again for two months. I didn’t get a good look at him and he was out of the room before the mama Ali opened her eyes. I don’t remember what he looked like, but I remember how small he was. I remember thinking that in general grandparents usually say they could eat the baby right up. This baby looked so small that I believed they could. I remember looking up at the clock and it was 10 pm. It was 10 o’clock and I didn’t know where my child was. Nothing was the best present I could have gotten for my birthday, but this was definitely the second best present.

When we get back to the room, my sister in law is waiting to find out how it went. The delivery went as expected, but that’s all we know. We are told that they are working on the baby and that they will let us know when we can go see him. The nurse privately tells me that if for some reason he doesn’t respond to treatment, they will bring us to the NICU asap. She doesn’t mention that they would only do that so we can say goodbye. The mama Ali was still recovering from pregnancy and they wouldn’t let her get up, but at least she could now lie with her head above her feet. It was my job to call both sets of the new grandparents. Everyone else could wait until tomorrow because I was in no mood to talk. I just need to know how the baby is. I don’t bother the nurse because she doesn’t know and she will just try to placate me. I don’t need reassurance. I need information dammit!

When the neonatologist walks in, she is wearing one of those gowns that goes over the scrubs and to me she looked like the angel of death. I just knew that he didn’t make it and we didn’t even get to hold him. In reality, she gave us the best news that she could. The baby was stable. He responded well to the treatment so far and he was stable. She couldn’t say the baby was fine because I don’t think anyone said that about Jordan until August. She then went over some of the potential complications that could occur at anytime – some of which was beyond their control to treat. It was a rather grim conversation.

The nurses still want the the mama Ali in bed. They have to monitor her vitals for a while and she isn’t allowed to get out of bed. After a few minutes, the mama Ali tells me to go without her. I want to stay with her to show support, but she is right. We don’t know what is happening and the baby deserves to be with at least one of his parents if things get really bad really fast. After I am sure the door to the room is securely closed, I literally run down the hallway to the NICU. The nurse on duty tells me to scrub my hands for 3 minutes by the timer and then she’ll show me the way. I care nothing for washing my hands, but I know I am washing my hands for baby, not me. I just need to see him. As the nurse walks me through the NICU I feel like a condemned man walking to the electric chair. I see really little babies hooked up to lots of support. I am filled with sadness at the little suffering bodies who don’t know life yet, only medicine. The nurse interrupts my thougts by pointing out my son 10 feet ahead.

His area is a bay in the NICU. The back is a wall and the two sides are curtains. If necessary the curtains can be drawn across the front to provide privacy. The wall is decorated with kids drawings and accented with blue trim. The baby is also blue. He is bathed in this blue light that looks a lot like a tanning light, but it makes him look blue. Healthy babies aren’t blue! Had there not been a chair next to the ‘bed’ I might have collapsed on the floor in total despair. As I sat in the chair the entire weight of the last 11 days is coming out. I cry as I have never cried before. Compared to this, June 29th was a weep. There are no thoughts. No insights. All that’s happening is that this is my son, he’s going to die before he had a chance to live, and it’s not fair!

I have been fortunate in that the only death I have known previously has been that of older relatives. The youngest funeral I ever attended was for my aunt Carole and she was in her early 60s. At her funeral I cried because of the memories I had of her. Tonight I cried because of the memories I wouldn’t have. I cried because there would be no Christmas. No skinned knees. No temper tantrums in a crowded restaurant. I cried because July 9th just became the worst day of my life, not just the first. I cried for longer and deeper than I ever have. I was in a dark place that I was prepared to stay in for a very long time. I don’t know what happened, but I heard a voice that said that this is my son. My first born son was lying lying next to me and he’s going to die. Don’t let his only memory be the memory of his father crying. Don’t be afraid to show him emotions, but don’t let the only emotion he ever knows be grief. For the first time in an hour I open my eyes.

I never got the chance to really examine the baby before. He was lying on his back on a special table. It was surrounded on all sides by a 3 inch tall plastic barrier, but was otherwise open. There was a heater above keeping him warm and the tanning lamp next to him that made him look blue. He was lying on a foam pad about as long as my foot. He was surrounded above and on the sides by something the size and shape of a shoe box but made of clear plastic. A machine was pumping some sort of mist into the showbox. He was surrounded by blankets, but not covered so that the heater could keep him warm. He was wearing a mask over his eyes so that if he ever attempted to open his eyes he wouldn’t be blinded by the tanning lights. He had leads in several areas over his chest to measure his vitals. There are several I.V.s, but because it still works for now, they are all placed in the navel. His arms are no thicker than my fingers. He was just starting to grow hair. I can see the future hairline, but the hair is just barely starting to sprout. He has a tube coming from his mouth to the ventilator. It is a very unusual ventilator. Rather than attempt to have him breathe at a normal pace, it does the breathing cycle over a hundred times a minute. It actually vibrates his chest and many NICUs use it for the smallest patients. The baby was of course not completely developed so his skin looks kind of thin. The nurses inform me that the baby’s skin is so new that they actually don’t wish to be touched at all. It’s too sensitive. At any rate he can’t be held until he is off of the vent.

As my sister in law joins me at the bedside, my tears have slowed to a trickle. For some reason the thought of him filled me with fear, but the sight of him is completely different. I don’t want to say that I feel hope, but definitely an absence of fear. When my sister in law comes I introduce the baby as if I have known him for years. In reality we haven’t even officially named him yet (That was going to occur in the 3rd trimester). Again, I feel a sense of pride as he kicks, but this time I can see it. Five minutes after baby neets his aunt, a nurse wheels in his mother in a wheel chair. There is no introduction here. Mothers have a bond with baby and for 11 days she has done nothing but strengthen that bond. Baby doesn’t move or react in anyway, but he gets his mother to do something I haven’t seen in July at all. She smiles.

As difficult as the last 11 days were, the next 109 were going to be the most difficult of our lives. There were over 95 round trips made by us to the hospital equaling over 12,000 miles. We stayed at the Ronald McDonald house 6 times and in the NICU itself 3. My wife and I would have our most raw fears and emotions exposed which led to too many fights in the hallway outside the NICU. I personally would wash my hands at the scrubbing sink for some 150 times – about seven and a half hours in total. I would cook at home 5 times and gain about 20 pounds. I would pay over $3 for a gallon of gas and complain about it. We would be called by the doctor to spend the night at the hospital twice. The baby would have it harder. He would have a machine breathe for him for the first month of life. He would not know the feeling of no IV sticking him for another month after that. He would experience more X rays in 3 months than I have experienced in my life. Of course he would also experience many kangaroo cares, messy diapers, tube feedings, bottles, and one special car ride. Those 109 days days for the baby however, is an entirely different story.

Happy Birthday, son.

Thank You For Today

Today is the birthday of my two favorite men. May each year get better and brighter. Happy Birthday and I love you both.

Sunday July 8th, 2007

“You guys are out of here!” is the strangest greeting we have ever received from the doctor. “I was able to get you a space in Jacksonville and an ambulance is on the way to pick you up.” I couldn’t believe it. Someone made a decision on a Sunday morning. We were leaving Daytona.

I woke up expecting Sunday to be a slow day. I knew her parents would stop by as they did daily, and my family probably would stop by. Otherwise, I expected to get a lot of reading in. But then the doctor comes in at lunchtime with the weird news. My in-laws are already there and I have to tell my family not to bother coming in. Too bad, I was going to have them bring me lunch.

My in-laws and I have to go into overdrive since the ambulance is literally on the way to get us. They pack and I carry everything to the car. They aren’t coming up to Jacksonville today and I won’t get to push any buttons in the ambulance anyway, so I am going to drive my car. As I am making one of the runs I pass a baby on the way out. There is an isolette with monitor and sensors all over it and a tube running from the isolette to a ventilator. This is all sitting on a stretcher being wheeled out by two paramedics. I can’t see the baby at all, but I now think I have met her. In Jacksonville we met another micro preemie who was born in Daytona on the 7th. This may have been her or may not, but the last time we saw her she was doing fine and had gone home.

It takes 3 or 4 trips to empty out the room, which easily took over a half hour in this hospital. By the time I am done the mama Ali is already on a stretcher. We have already discussed a big concern for this trip. Riding in an ambulance for an hour and a half will give her a good shaking. A pothole at highway speeds could case the water to break. I try hard to reassure her. The interstate here is relatively smooth, it’s the middle of the summer, and ambulances probably have good shock absorbers. I wish I could ride with her, but there’s no room in the back for me. I escort her down to the ambulance area and kiss her goodbye. “Remember what I want for my birthday”

I have to stop at the house because I was not prepared to spend Sunday night out. I was supposed to sleep here tonight, but I am not going to let her spend the first night in this hospital alone. I don’t know what will happen, but whatever happens will happen in Jacksonville. I haven’t mentioned it yet, but I don’t know if I can make the daily round trip every day. I’ll worry about that in the future, but now it’s time to go to the new hospital.

The new hospital is nothing short of enormous. There are several buildings as part of the complex instead of one large building. It takes me some 15 minutes to find the maternity area which is only 5 minutes from my car. When I finally get up to the room the mama Ali is already there and the nurse is checking her over. It seems every new hospital has slightly different gadgets and they have to hook up their own IV machine and put on their own stockings for her feet. I get the chance to check out the room. We are definitely not in the long term section. This room has enough space for anyone and everyone who wants to stand at the foot of the bed. I could probably fit 2 air mattresses down there without moving a thing. We have our own bathroom complete with a shower! I don’t know how long they will let us stay in this room, but I can handle this for a long time.

Soon the doctor comes in. It’s time to get down to business. First, we figure out the exact date the pregnancy began because at 23 weeks and 2 days, everyday counts. Babies at 24 weeks do well, they don’t do anything at this hospital for 22 weekers. Had it been 3 days earlier in the pregnancy, they wouldn’t even try to save the baby. The doctor goes over the numbers. 23-24 weeks is a critical interval as far as lung development. Very rarely do babies at 22 weeks survive even with the best support. At 24 weeks, most babies survive just fine. At 23 weeks around 1 in 3 survive. Of those that survive, around 1 in 10 have no lasting effects. Lasting effects could be anything from cerebral palsy, to spinal defects, to retardation, to a million different things. I do the quick math in my head and realize he is telling us that the chance of a perfectly normal baby is about 3 percent. When the baby is born t 23 weeks, the stress of birth will cause him to take 2 or 3 breaths on his own. After that he will be too weak to breathe and his lungs will be too immature to work on room air anyway. He will need lots of oxygen and a machine to breathe for him. The doctor then asked a question I will never forget. “After the baby is born, he will need lots of support and the odds are that even with the support he probably won’t survive. If he does, he will probably never be a normal child. If he is born at 23 weeks, do you want us to save him?”

We have all seen shows on TV or kids in the mall and asked ourselves, could we raise a handicapped kid? Could we raise a kid that might be blind, or in a wheelchair, or severely retarded? If we knew in advance that the fetus had Down’s syndrome would we terminate the pregnancy? I don’t mean to say that I know what you would answer, but you never forget when the doctor asks you that question. The doctor asked me do I want to go further when there is little to no chance of my kid being able to play basketball because he can’t see, or run, or remember the rules? Even after everything we had been through for 10 days I must make a confession now that I have never made before. Even after all that I had put my wife through for 10 days, I thought about it. I actually stopped to ask myself that question seriously for one last time. The mama Ali didn’t miss a beat and said that’s what we have been working for for the last 10 days. She may have thought I was letting her answer. In reality I was just thinking about it. I probably would have said yes, but I must say that I actually had to think about it. When she answered that question for me I think I matured about 5 years. I was no longer the guy in his 20s who could still flirt with all the girls if he wasn’t married. I stopped being the guy who shopped at Spencer gifts and put a gallon of gas in the Geo because that’s all I could afford. Now I’m a father with a little boy. A boy with special needs.

The doctor said that if we intended to save the baby, that his lungs were not ready yet. They have a steroid (not that kind of steroid) that when administered to the mother helps the lungs develop, but it is given in two shots, and the shots must be given 24 hours apart. I thought the guy was crazy. We of course agreed to take the shots, but 24 hours isn’t a problem. We’ve been in the hospital for 10 days, we should be able to at least finish out the week. The nurse comes in with the needle. The clock says 7pm.

For the rest of the evening we are both in a state of shock. We have been through so much, and right now it seems all for nothing. 10 days in the hospital. Thousands of dollars per day. Too many I.V.s and injections to measure. Powdered eggs every morning. We thought it was all so we can get here and they can save the baby. Even though the odds get better every passing minute, survival is still unlikely. Part of me wants to cry, but too many tears have been shed in July. I’m all out of tears for now. The only saving grace is that we have made it through another day after the doctors said we couldn’t. Tomorrow is July 9th, my 30th birthday.

Saturday July 7th, 2007

Saturday morning was like any other in the hospital. The staff doesn’t know it’s the weekend. It has only been a week, but I feel as if I have been doing the hospital thing for about a month. I usually get up early because I can’t sleep well under the physical and emotional conditions. I try and take care of my hygiene as quietly as possible. I still feel nasty afterwards because there is no shower accessible in the hospital. If I haven’t woken up the mama Ali, the nurse does when she brings in the breakfast. I feel that the baby needs the energy so I always try and feed her more than she wants to eat. Funny how she doesn’t enjoy eating powdered eggs while lying upside down with an IV in her arm. After breakfast I try and help her clean up as best as possible. Washing the face and hands. Brushing teeth. Cleaning up anything the nurses have left her like iodine or tape residue. Usually I try and straighten up the room for busy work or we just talk. I think one day she attempted to read. She never watched TV in the morning and very rarely in the evening.

There was almost always a late morning nap because she spent all day in bed. That would be my chance to run down to the cafeteria and get my own breakfast. Daytona and Ormond were just alike. The food had been under the lamps for too long, I was excited to eat until I tasted the food. The places only took cash and they took too much of it. I would always try to get extra food to bring back to the room. The mama Ali wasn’t ever hungry.

Today was slightly different from the usual day. My family always goes out to dinner to celebrate my birthday and since my younger sister was in town, today was the day. I was fully prepared to have everyone order their food to go and to have dinner in the hospital room. That way, my wife would not feel left out at a time when she already felt so bad. She would have none of it. She didn’t want to inconvenience 5 other people so that we can all sit around and watch her eat while wearing a hospital gown, needing a shower, and generally pretending as if we weren’t in a hospital. She made a convincing point. She made me promise to hurry back as soon as possible and to not have any fun. My mother and sister come to the hospital room around lunchtime where I insist on doing an ultrasound again (More goo for me to wipe up later). Again there is no real reason for this other than to show my family that the baby can kick. That is something entirely appropriate for 23 weeks, but yet I still feel proud.

The doctor stops by after lunch to do an exam. We ask him about getting us to the better hospital to deliver the baby. There are only a handful of options. We can go to one in Jacksonville or one of two in Orlando. However, those hospitals don’t just take anyone. First, they need a bed for us. I’d also like a shower, but I don’t mention it. Also, the hospitals want people who are at least 23 weeks at an absolute minimum, something we just reached today. He was going to work on it and keep us updated. That meant another night in Daytona. Sunday didn’t look good either because admitting us to a new hospital would require someone at the new hospital making a decision, and the decision makers tended not to work the Sunday after Independence Day.

After lunch I leave with my family and within a few hours we are heading out to eat. We try out a new fancy restaurant. I actually liked the food, but the guilt was unbearable. When I saw my sister bicker over something with her husband, I wanted the chance to bicker with my wife. When I saw another couple in the restaurant with a screaming toddler, I actually was jealous that they had a screaming toddler. The food even made me feel guilty. From June 29th through July 7th I had survived on 3 food groups. The first was cafeteria. Hot, but bland. The second food group was drive thru. Convenient, but probably committing suicide. The 3rd food group was home cooking. That was made up entirely of PB&J sandwiches I made myself for breakfast before work. This dinner was my first real food in July. By the time the month would be over I would have eaten more fast food than in all of 2006. I don’t think I turned on the stove at all in July 2007.

Soon enough it was time for me to get back to the hospital. This was no small task. The hospital was directly across from the racetrack. In fact, we stay in the hospital that the racers go to when they get in a crash. Tonight is the Pepsi 400. Traffic is bad and it takes twice as long to get back to the hospital as it took to leave it earlier. By the time I get back to the room, the mama Ali was watching TV. We even watched a lap of the race (that’s a lot for us). At the end of the evening the mama Ali went to sleep and the race was over. They conclude the race with a major fireworks show. We are facing away from the track, so I see nothing, but I fall asleep to the sound of something that sounds like gunfire.

Friday July 6th, 2007

Every 4th of July weekend my younger sister comes to visit from Atlanta. I guess she thinks Atlanta in July isn't hot enough. Anyway, she arrives shortly before I leave work. I have her and her husband meet me at my house. The mama Ali wants me to come straight to the hospital, but I give them a quick tour at my new job. Soon enough we arrive in Daytona for them to visit and for me to stay.



My younger sister has always felt uncomfortable in hospitals. When she's in the hospital she wants to leave. When others are in the hospital she tries so hard to act as if nothing is wrong. Today is a little different. She is full of questions. We are full of answers. It's nice to have visitors.



After they leave, we are alone again in the hospital. I have only spent one night in this room so far. I stay here to show support for my wife, but this place is not designed for my comfort. I have to move most of the furniture that isn't nailed down to make room for the air mattress. When the nurse come in to take vitals, I have to move out of the way. On top of that, the pregnant woman lying underneath all of the blankets gets to choose the thermostat setting. However, this is a good day. She has now been in the hospital since the previous Friday with no changes. She isn't dilated to any different level and I remind her that it is time to flip the page. We have one of those pregnancy books at home that covers pregnancies week by week. Even though we don't actually read the book since the hospital, we used to turn the page every Saturday. It's one of those books that has a brief paragraph mentioning that in some rare instances some mothers go into labor at this point ad spend months in the NICU - but that won't happen to the readers of the book. I need to write the publisher and get a refund. We have just finished 22 weeks of pregnancy and tomorrow will begin week 23. I don't know it at the time but there will be no week 24.

Thursday July 5th, 2007

In life I find some days are better than others. Sometimes I wake up on Monday and it’s going to be a great day. A week later I wake up on Monday and it’s going to be a terrible day. When I walk into the hospital room today, there might as well be a rain cloud in the room. The mama Ali is in a bad mood. She has been eating bland food for 7 days. I’ve tried bringing in outside food, but your favorite take out doesn’t taste the same when you are upside down. She has had an IV inserted somewhere in her body all that time, and they frequently move it around. I think the IVs are the worst for her. She naturally hates needles and inserting an IV has started to sound like a bad sitcom. The first nurse comes in and for whatever reason has to move the IV to the other arm. That nurse fails. Then they call in the senior nurse. The senior nurse usually has the most experience and knowledge of the job. The senior nurse is usually an older person with a less steady hand. This fails as well. Then they call the assistant to the anesthesiologist. The assistant is usually busy. All told moving the IV around can take up to 20 minutes.

On top of all that is the fact that the mama Ali is a fundamentally private woman. She is a private woman who hasn’t worn anything other than a hospital gown since being admitted. A private woman who has had relative strangers see parts of her body they were never supposed to see. Back in the day we would watch those reality birth shows on TV and she would always comment that there were always too many people standing at the foot of the bed. Now she has random people checking down there for various reasons on a daily basis. Even basic hygiene is a challenge. She can’t wash her hands so she just puts layers of sanitizer on top of layers. She can’t do her own hair and has to rely on family. Her hair has not and will not be washed at all in the hospital. Try brushing your teeth while lying upside down in bed everyday.

Today she looks like she’s ready to break. She isn’t mad at anyone, but she would like to just be able to sit next to the window and look outside. My job this evening is to reassure her. I think it will be easy. She has gone 7 days when the doctors thought she would not be able to last 3. We’re in a hospital where they can save the baby if she goes into labor. I try to get her to realize that if we have already lasted 7 days then logically we must be able to last another 7 weeks (I have really started to believe that). The baby is healthy and being checked by doctors everyday. However, it doesn’t help as much as I thought. She’s not interested in TV, or reading, or computers. She doesn’t ever complain but I know that what she needs is a shower and a pair of underwear. As I walk out of the hospital that night, the nurse can tell I’m in a down mood and asks if I am OK. I simply answer, “No.” and walk out to the parking lot.

Wednesday July 4th, 2007 - Unindependence day

First thing this morning, the nurse is in the room delivering breakfast and taking the vitals. This is one of our favorite nurses and we both like talking with her about her job. Today she said that we were fortunate to be having a little boy. She said that when babies are born premature (This crazy lady still thinks we can’t make it), the not all babies are created the same. She mentioned that black boys tend to do the best, and that white boys tend to do the worst, with girls of either race somewhere in between. She said that it didn’t have to do with any reason that she knew about but that typically that’s the way things end up usually when it comes to preemies. I didn’t appreciate this nurse having to involve race in what was a blatant lie, but I realized that she was doing it to make us feel better. Later on I learned that she was actually telling the truth. When learning about micro preemies I learned that many caretakers actually use a term WWB – wimpy white boy. You won’t find it on a medical chart or text but typically white boys, particularly ones that are part of multiples, respond the worst to treatments. Who knew?

I understand why the hospital put little decorations with the food to celebrate the holiday, but they need to look at this from our perspective. First of all, they are reminding us that we are essentially missing the holiday. In-patients aren't going anywhere and in our case in particular, the patient will walk 5 steps today if at all. It's like going out of your way to remind people they are missing thanksgiving by serving them turkey loaf. Second, of all holidays that symbolize the exact opposite of what she is experiencing – Independence day? Let's just say we are totally dependent today. The closest we get to celebrating the holiday is when she gets a hamburger for lunch. It wasn't very appetizing.

I also see the doctor that day and ask him about that bulletin board I saw with the graduates. He explains that babies are judged based on their gestation not their size. For example it is common in the case of multiples for them to be of a smaller size, but be more developed. That means if triplets are all born weighing less than a pound but at 25 weeks they have a better chance than a baby weighing a pound and a half at 22 weeks. He compared the lungs to a car engine. A Honda Civic engine that’s fully built works better than a locomotive with half the parts missing. Another factor is that the Daytona NICU does not have the state of the art machines right now. Little babies need very very special equipment that is very expensive. Daytona may have had some of that in the past, but today they don’t. Daytona has the equipment to attempt to stabilize a baby at 22 weeks and 5 days, but all they can do is make the attempt. Our best choice is a level 1 NICU, and none of the local ones will take us this early.

Soon after lunch we get a visitor from the mama Ali’s job. She’s one of our friends and they haven’t seen each other in a week. It's great to have visitors. We are great friends with her family and we enjoy hearing family talk How the kids are doing. How the husband is doing. Ordinarily I would just go off with Simon and let them talk, but Simon is watching the kids and I am not going anywhere this afternoon. I take that back. I do run down to the cafeteria the get lunch They were serving the normal July 4th stuff, but in the end I'm just not that hungry. I'm not worn down or sad, just not in a celebration mood. It's like working on Thanksgiving. Leftover turkey sandwiches are not the real thing.

The rest of the day is actually pretty fun. The girls are acting like one of them isn't lying in bed wearing a hospital gown. For the first time in days I get to make some progress on the book I'm reading. Another day down, and about 99 to go. Even though there are no fireworks for me this year I walk out of the hospital with John Sousa playing in my head. We are going to make it to the end of the pregnancy.

Tuesday July 3rd, 2007

For the first time in days I finish a full day at work. I don’t gets 8 hours of work done, but the lights stay on and the bills get paid. I run out of work like Bart Simpson runs out of school at the end of the day. Daytona here I come.

Walking into the hospital I walked past that damn nursery again. This time I stopped at the bulletin board where they had pictures of some of their ‘graduates’. The pictures are all of little babies. Really little ones. About half of them weigh less than two pounds. The oldest picture is of a two pounder born the same year as me. The smallest weighed just under a pound. Our doctor estimates that our baby is just a shade over a pound based on his length. It’s time we have a heart to heart about our baby with the doctor. According to these pictures, he may be OK here even if he was born today.

The doctor had already done his rounds by the time I arrived. There was no change in the mama Ali’s condition. Another day down. I start to actually believe that the mama Ali can hold out for a few more days. When I get there, she had spent some time watching TV, but as usual spent most of the day napping. I feel a little guilty about being up and about, but then again I felt that way all week. Her hair had been done by her mom and her nurse had wiped her down. The baths always made her feel better. Lying under the covers all day caused her to sweat to various degrees. Also it seemed as if they moved the IV around daily and her arms would swathed in iodine. For some reason I forget, they had her wear special tight leggings which were taken off during the bath. I spent most of the evenings in the hospital talking about stuff outside the hospital. I didn’t know the gossip at her job so I just kept her up on current events. Her mother kept her up on family gossip during the day while I was at work. Seeing her in good spirits raises my mood. I walk out of that hospital feeling more confident than I have felt in days. Who knows? A 40 week pregnancy isn’t possible, but if we take it a day at a time, maybe we can make 30 weeks.

When I get to the house I’m feeling good enough to do something I haven’t yet done. It’s time to call family and friends. Of course the parents knew and they called and told some people. However, most of the family didn’t know yet. I haven’t called from the hospital because they would want to talk to the mama Ali who is rarely in the mood to talk to me let alone to the rest of the family. Besides, the nurses get real picky about being on cell phones around all their fancy equipment. I would have done it earlier, but tonight is the first night at the house without crying. Everyone of course offers their sympathy and support. I have single handedly made today a bad day for about a dozen people. Tomorrow I will go for another dozen when I call the rest of the family.

Monday July 2nd, 2007

At every job I have worked at there are certain days that even though we may be open for business, nothing gets done. The day after Thanksgiving. The entire week between Xmas and New Year’s. For me, today is one of those days. I walk into work knowing that if anything work related comes out of my office today it will be purely coincidental. I have work to do, but almost none with my job. After I check my work email I start making phone calls.

However, the mama Ali calls me at 9am while I’m just getting warmed up. There is no way not to be nervous when she calls me anymore. Every call could be the call. This call is to let me know that they have finally gotten clearance for her to be transferred to Daytona. My boss is already well aware of my situation and lets me leave work in the middle of the day. Again. It wasn’t the last time that summer. I have to quickly get to Ormond. I have to hurry up and get there and – wait. I get to Ormond around 10:30 am. The ambulance doesn’t arrive until about an hour after that. We don’t leave the hospital until noon. As they transfer the mama Ali from the bed to the stretcher, they don’t want her to move. They don’t want her to attempt to help. They actually lift up the sheet she is lying on to transfer her to the stretcher. In my mind I can only think of one thing. I know that Ormond will charge us $300 for taking their sheet. Will Daytona give us a $300 credit for giving them a sheet?

All little boys grow up wanting to ride in a fire truck. They are big and colorful and make lots of noise. Plus they play with fire. Other than the fire part, ambulances are the same and for the first time I get to ride in the front. Alas, the siren was not turned on. We did not drive fast. We ran no lights. We did not get to choose the radio station. We were not allowed to push any of the buttons to find out what they did. We were not covered by insurance. We are still paying the ambulance company. However, they did deliver her to Daytona in probably about 5 seconds faster than I could have managed on my own and she was still pregnant. I suppose it was worth it. I still want to ride in a fire truck.

When we got out of the ambulance I saw that the techs had misinterpreted the directions for her. In the hospital she had been lying in a position where the bed was flat and the whole bed was tilted such that her head was the lowest part of her. I can’t spell the name so we will call this the ‘funny T’ position. The techs interpreted this to mean that her legs should be elevated, but that her head can be a little elevated as well causing her to lie in a V position. That meant for the first time in days the fluid wasn’t rushing to her head. In the time it took to ride from Ormond to Daytona it looked as if she lost a couple of pounds. It was funny. I didn’t mention anything because she had the chance to do something she wouldn’t be able to do again. Look around. After being in Ormond for 3 days she never got to look around. She could only she what she could see from the bed. She couldn’t even see out the other side of the window. Now she was looking around the maternity ward. This was her only chance while she was pregnant to actually look in other rooms, or see the hallway, or know what the floor was covered with. Altogether too quickly she was placed in a room where she would only be able to study the same for walls. She never complained about that part – not even once.

Daytona was a bigger hospital than Ormond – by far. In fact other than the beachfront hotels and the raceway, it was the tallest building in town. They even had a segregated area in the maternity ward for the women who would be there for a long time. I do mean segregated because it was the proverbial back of the bus and the literal back of the ward. I don’t have a problem with that. The long term stay rooms were half the size of the other rooms. I could sort of deal with that. The worst part was that to get to our room we had to walk past the nursery/NICU. The NICU was sealed off, but the nursery was there. The babies were big and chubby. I would find out that the babies were also in there for hours – not weeks. The mama Ali did not see that and would not see that. I saw it daily. Coming and going.

The room was not like the other rooms either. The other rooms were designed to be big enough for the doctor, nurses, several family, and anyone else who cared to watch. They also had wide but hard beds. The long term rooms had beds that were softer but less wide and were not expected to hold a baseball team at the foot of the bed. Our room was narrow with most of the floor space taken up by the bed and two chairs. I would have to move furniture around if I expected to sleep here. I would even have to move the bed over to make room. This was a room where they put people who are going to be there a while. That means the doctor was wrong about the end being close. He said that the pregnancy wouldn’t last the weekend. Now it’s Monday afternoon and they are preparing for the pregnancy to last longer. I walked into that new room with my wife and a smile on my face.

My in laws were there and true to form they tried to straighten up the room. My job was to get the clothes and stuff from the car. Their job was to organize it. They’re funny like that. I also made some more phone calls to bill companies. We weren’t behind yet, but little things need to be taken care of. I don’t want to insure a car that won’t be driven. The health club membership has to go for now at least. My wife won’t be working for a while so let’s see if we can skip a car payment. The house has internet, but the computer is in the hospital. She has her own health insurance and the baby will be on mine so I need to notify both insurance companies. Her insurance company had trouble understanding how she could be in labor 3 months after her first ultrasound. So did I.

Before I knew it, it was time to go again. I desperately wanted to stay the first night in the new room, but I had to go. Saying goodbye was hard again, but not as hard. There was still the fear, but the doctor said there were no major changes, so there was a possibility that she could last another day. If she can go all day Monday without giving birth, she can do it Tuesday. I remember telling her as I left that I knew what I wanted for my birthday – nothing. Today was the 2nd. My birthday was the 9th. She knew exactly what I meant.

Sunday July 1st, 2007

Today was a special day. This afternoon all 4 grandparents (parents at the time) came to visit the hospital room. The simple fact is that the hospital room is pretty boring. The mama Ali has been spending a lot of time napping (because she always in bed) and when there’s no one in there with us, it gets boring. For me, mornings are the worst. For her, all day is the worst. However, the fun part is when we get visitors. Today we get several!

When all of the parents arrived, there of course was the normal talk about the mama Ali and the baby. However, that soon stopped and it turned to other topics. “Did you hear about what the mayor said last week?” “That construction project on the interstate is never going to be finished!” 3 of 4 parents are retired teachers and the 4th also worked for the city, so they spent lots of time complaining about how their old jobs sucked and how things have gone to hell in their respective cities since they left. It felt great. It was normal conversation that made it feel like a normal Sunday get together. I almost forgot I was in the hospital – almost.

Something else weird happened that afternoon. When the nurse came in to check the vitals, I asked her to hook up the fetal monitor. For some reason that I don’t understand today, I was proud of hearing that heartbeat and wanted the future grandparents to hear it. I don’t know why I was so anxious for everyone to hear it. The baby was totally healthy and had solid vitals the entire pregnancy. There really is no discussion to occur. “The heartbeat sounds strong today.” “He has his mother’s left ventricle.” “His aortic valve sounds a little weak, but I know some vitamins he can take for that.” Still, I wanted them to hear. The heart was still beating. Occasionally there would be a hiccup. For some reason I felt proud. I still do today, but now I have a reason.

Eventually I was time for my parents to go. Everyone had come to a consensus that the schools sucked back in the day and will continue to suck in the future. My in laws stuck around and tried to straighten up the room since we were going to be there for a while. More than anyone else I’ve ever met, they truly seem to enjoy the act of cleaning. Everyone enjoys being in a clean place, but they genuinely enjoy the act of getting someplace clean. I don’t mind and they do good work. However, before they finish it’s time for me to go.

I was at the hospital from lunchtime Friday until dinnertime Sunday, but it I time to go. Outside of this hospital, the world still rotates and life goes on. My job still operates and I get paid to be there. It’s time to go to my house and get ready for tomorrow. First, I have to say goodbye. How do I say that? She knows I love her more than ever and she loves me back. We are thankful for each other and know it. We are both scared and know it. We will miss each other over the next day and know it. There is absolutely nothing either of us can say that we don’t already intimately know. We are both crying so hard that to this day I don’t remember if we actually said anything, but I remember that we didn’t need to.

An hour later I am at my house. I call it my house because I am homeless. My home has life, this place is dead. My home smells like food at 7pm. This place has no smell. My home has dogs running around. This place doesn’t even have bugs running around. My home has a wife nagging me about bills. This place is totally silent……….




I go through the motions of laundry and showering (I really needed one). And then what? Of course I cry, but now for selfish reasons. I am more alone than I have ever been in my life. Even when I’ve been alone before I had options. I could see a friend or visit family. Today I am a gray cloud that would ruin the mood of anyone I visit. I can’t even invite anyone over the my house because the place is such a mess. Someone needs to clean this place up….and that means me. It’s mine now. All mine. I get to run the house. I have to run the house. There’s a stack of bills to be paid. I have plenty of laundry to do. I have to run this house alone after doing it 50/50 for years. I have complained in the past when her laundry interferes with mine. We always negotiate which bills will be paid by whom this month. We always fight about the thermostat. If I sit here feeling sorry for myself for the next – next whatever, there won’t be house to bring her back to.

It’s time to start feeling sorry for myself. I have a very important job to do and I am not strong enough to look her in the eye and tell her I can’t do it. Her car isn’t going anywhere (I don’t remember how or when I took it from the hospital), but I’m still paying insurance? My house is only 80 degrees in FL in July and I haven’t been here in 2 days! (in case you don’t know 80 degrees is cold for FL) Her lifeline to the world is a cell phone that the bill hasn’t been paid on! I don’t know what the future holds, but my only choices are that I can let it happen or make it happen. I go to bed that night knowing that if my wife has the strength to lie in bed all day, then I have got to have the strength to man up. Monday is going to be a very busy day.