Where were you 4 months ago?

I included a link for the perspective of a NICU nurse. She wasn't our nurse and I just found her blog today, but it is interesting to read about the same journey from the other side.

The young and the restless

You know what the hardest part is for me personally? I can handle the late night feedings. He doesn’t cry nearly as much as I feared he would. He doesn’t have really bad diapers yet. It’s the burping. He doesn’t do it as fast as I’d like. For the 3am feeding, he takes 20 minutes to eat, another 5 for the diaper, and may take over 15 minutes plus to burp. On bad days he takes as long to burp as to eat. I hit him hard, soft, low, high, left side, right side. I rub, I stroke, I once turned him upside down out of frustration. If you don’t burp him properly, he spits up. Most babies do. Last night, I thought I had him beat. I started the midnight feeding on time. By a quarter to one he still hadn’t burped, so I put him back in the crib. I just placed some paper towels under his head. Problem solved? He vomited enough to soak through the paper towels and sheets. We had to change his bed out.

Why is it when family and friends offer to help out with the baby, they mean between 10 am and 8pm? I don’t need help with the noon feeding. I need you to do the midnight feeding. I don’t need someone to be there to hold the pacifier in. I need someone to handle the diapers during one of his midnight surprises.

He is overall an absolute pleasure. I am not getting as much sleep as I’d like, but the way everyone talks, it was supposed to be worse. He has his feeds every 3 hours, and they usually take 40 minutes. That means we get a 2 hour nap in between feeds. We also alternate feeds, so whoever feeds at midnight doesn’t have to feed at 3 am. On a good night that can mean up to 6 hours of sleep - enough to function on. It’s actually a pretty solid schedule, until we get reminded who is in charge. Last night, he decided rather than eat 3 ounces every 3 hours, he wants to eat 1 ounce per hour. I confess I actually tried to talk the mama Ali into letting him cry himself to sleep at 5:30. We only had half an hour to get up and all 3 of us were pretty cranky. Of course he fell asleep right after the 6 am feeding.

I want to thank Gail & Steve Hollander. We appreciate you guys very much and thank you for what you guys did. While I’m in the thanking mood, I need to thank both sets of grandparents. Ever since we were first admitted to the hospital and I had to drop the dogs off for a week, until this past weekend when you were able to help us with our computer, you guys have helped us during this crazy summer (it’s still summer in FL). Every single time we asked for help, we got it. We needed someone to watch the dogs, you were there. We needed a ride to the hospital, you were there. We needed a day off from the hospital, you went there. As I write this at work, one of you is going to the 1st doctor visit with the mama Ali right now. We haven’t been around much lately because of the travel, but we could not have done this without you. We appreciate everything you do for us and we will show our gratitude the best way we can. We won’t take it personal when your grandson decides that 4 am is the perfect time for a cuddle.

Pictures

July 10, 2007

October 26, 2007

Last Picture taken in the NICU

Tummy Time!!!

Tuckered out from the tummy time.

Video from getting into the car seat.

Free at Last!

Wow what a week! Anyway, we fought the doctor a bit about rooming in again, but they had something we wanted, so they won. The hospital policy is a room in is 8 consecutive hours. My in laws did during the day Tuesday. My mom was out of town, so I went with my dad during the day Wednesday, and the mama Ali joined me Wednesday night. I don’t know how the boy knew the difference but he couldn't have been easier for either of his grandparents. Few alarms and slept the whole time. Jordan somehow had a different plan for his parents and has been following it pretty steadily. He eats every 3 hours until his pediatrician says different. He usually takes about 30 minutes to feed. Then he naps for 60 to 90 minutes. Then he needs some attention for an hour. It took us two days to figure out that he’s afraid of the dark. He spent 4 months without it ever being dark and he learned to sleep in that environment. Now we just sleep with the light on. We tried it with darkness and got no sleep.
Anyway, he was supposed to have an eye exam Thursday and then be discharged. The eye doctor was able to come Wednesday. I won’t be watching an eye exam again. They have to get a real good view of the eye and that means they have a special clamp to hold the lid open. It hurt him bad, but it hurt me worse. After his exam he fell asleep and my dad had to console me. The good news is that he improved to stage 1 ROP and it is unlikely they will ever have to intervene. We roomed in that night and everything went OK except that he was up more than we wanted because of the darkness. Also, that stupid alarm started to go off. That alarm is worse than having him on oxygen sometimes. Every night we get woken up from a sound sleep by a false alarm. I know we have it for a reason, and one time it actually told us something accurate, but golly that thing is a chore.
When we finally got discharged we all handled it differently. Jordan slept. The mama Ali was scared the entire ride home. I cried. Not earth shattering joy or anything. I would have to say more like a weight off of my shoulders. I don’t have to worry about who the nurse taking care of him is. I don’t have to ask permission to hold my son. I don’t have to ask someone else what kind of day he’s having. I don’t have to ask anyone anything anymore. My wife and I call all the shots. We decide when to feed him, hold him, change him, play with him. It’s kind of neat.
As I write this, I’m am looking at him. He wants to eat, but I’m waiting until it’s actually feeding time. He is going to town on a pacifier while he sleeps. I have to give a special thanks to my son, Jordan. When my wife was admitted to the hospital 4 cm dilated at the end of her 2nd trimester, I asked why us. Now I know the reason he was so early is because he had so much to teach us. I used to be afraid on snakes. I don’t like them, and still respect them, but now I know what fear is. I used to be proud to be American, or of my college or a whole bunch of other crap. Never have I felt more pride than I do right now. He taught me to never take anything for granted. In 15 years, I won’t agree with everything he says and does, but I won’t forget how close I came to him not being able to do or say anything. I was asked once why the nicknames on this blog have the word Ali in them. I needed Jordan to be the best fighter in the world. I needed him to think he is the best fighter in the world. I need him not to end up in jail in 10 years. Of course, I have never seen anyone fight the fight he has just won. He has spent over 4 months in the NICU. He has never been diagnosed with an infection. He has never had a surgery - except for that one at the end. He has come home on the lowest possible flow of oxygen without turning it off. Everything we have ever asked of him he has done. Bottles, cannula, medicines, formula, eye exams, I.V.s, everything. Jordan, from the bottom of our hearts, your mother and I want to thank you for teaching, and thank you for fighting.
P.S. - I misplaced the USB cable, but pictures are coming soon!

Homecoming

I'm very busy and a little tired right now, but we are home with our baby. I will make a detailed post either tonight or tomorrow, but everything is fine. WE'RE HOME!

I Take it Back!!!

Before you get too far into this entry, I am upset and am about to use some language that I’ve not used on this blog before.

I knew I shouldn’t have thanked those bastards until I got my baby home. After 4 months of dealing with lung problems, ventilators, blood pressure problems, and the constant threat of infection, it appears that only thing that can stop Jordan is a damn beaurocrat. Jordan’s doctor is off today so he was seen by the doctor on call. This doctor apparently works on commission. The mama Ali and I roomed in with him last Friday. As I mentioned, he was fussy, but for obvious reasons. He took all of his food, had some messy diapers, cried a lot, and his parents got no sleep. This should all be par for the course for a new baby. However, the doctor wants us to do it again. The only reasons that make sense to me are that he either wants to make sure that the baby doesn’t ever cry at night, he works on commission, or apparently having someone slice off half your privates shouldn’t make you cry. That isn’t the best part though. Since both sets of grandparents will be watching him during the day after we go back to work, the doctor wants them to room in as well. Each room in requires someone to stay alone with the baby for 8 hours. The doctor wants to hold on to the baby until Friday – DESPITE THE FACT THAT THE BABY IS HEALTHY!!! That’s like the mechanic wanting to have you sit in you car idling for a few hours even though he says that the car is fixed. I want to shift this thing into gear and go!

Right now the plan is for everyone to complete the room in by Wednesday night, we room in overnight Wednesday, he has an eye doctor appt Thursday and then we are taking him home. I don’t know if they will willingly discharge or not though. I suppose we give them a choice and then make sure they make the right choice. I’m not saying that I would do anything unethical, I am just really motivated. Now, on a totally unrelated topic, my father once broke out of Turkish prison with a missing eye, a gunshot wound to his left shoulder, a shoelace, and a gum wrapper. Rudy Giuliani once called him sir. He REALLY wants his grandson home by Thursday evening.

Empty Nest

There are certain things that separate a good husband from a bad husband. A good husband knows that there are certain fights that can’t be won with his wife, particularly a new mother. When she’s pregnant, you can’t deny her her food cravings. When she’s pregnant, she controls the thermostat. When the baby is getting ready to come home, she is in charge on the cleaning. My job is to clean what she says, when she says, how she says. It’s nesting and it goes double when the baby has lung problems. We actually spent a full day cleaning house and we are not yet done. We didn’t even get to the hospital yesterday. However, we did sleep late which is also nice. The doctor did confirm that she expects to send him home on Wednesday, not Tuesday. That means an extra day of cleaning. I promise that by Thursday morning my son will have the cleanest clothes to poop in out of any baby on the block.

He is getting to be really good at eating. Apparently, the whole eating concept has clicked on in his brain. He gets hungry. He cries. Someone sticks a bottle in his mouth. He sucks on it. He’s not hungry. The doctors say the minimum is once every 3 hours. This morning he made the nurse do it after two and a half. The doctors say he must average 1.5 ounces. His last bottle he took double that. If he does the minimum, he gets 368 ml per day. Over the last day, he has gotten over 600 ml. However, he is only 5 pounds 5 ounces. That gives an idea of what’s going on in the diapers. On top of that as I mentioned earlier, he doesn’t like to poop unless he’s nekkid. That kid has soiled 4 diapers with 5 movements during one changing on Friday. I honestly think I saw him smile about halfway through. Considering where we started, its got to be pretty bad when the mama Ali and I are trying to get each other to handle the next changing.

I want to send a special thanks to the nurses, doctors, and staff at the children’s hospital. I am an accountant. I spend all day in front of a computer looking a various different reports. I call people to pay bills and collect invoices. The staff at the hospital save lives. When the hospital calls customers, the phone calls matter. Sometimes they call with good news. Sometimes they don’t (see Baby 217 in August). I haven’t always agreed with the style of some of the nurses, but I have never doubted their competence. My son is alive today because for every second of every day since early July, they have had sophisticated computers monitoring his vitals. His nurses have checked on him almost hourly, and doctors have seen him daily. If these people weren’t the best at what they did, I wouldn’t be writing this right now. I couldn’t possibly repay the staff at the hospital for all of their kindness. I couldn’t possibly repay the staff for all of their hard work. I couldn’t possibly repay them for all of the time and money they have spent saving my son’s life. Please understand what I’m saying. I couldn’t possibly repay you people, so please contact the billing department and let them know!

The Unkindest Cut

OK that last post about the romantic dinner - Chick Fil A drive thru. That stuff about making sure everything is perfect? I went from giving my car a full tune up to maybe I'll have time for a car wash and full tank of gas. Baby proofing? By the time he starts crawling. We roomed in last night, will be nesting (cleaning the entire house) today and tomorrow. Monday we work. Tuesday, assuming he passes his last checkup, parole. Thursday, meeting with parole officer (eye doctor) back at the big house.


Yesterday we had a big day scheduled. First was CPR, learning how to use the apnea sensor and how to use the oxygen. They are actually going to call me Monday morning to schedule a time Monday afternoon to deliver a couple dozen gallons of liquid oxygen to my house. Liquid oxygen is half of the stuff they use to power the space shuttle. Expose it to flame and it can lift a large aircraft to mach 25, or it can lift my roof to the parking lot of the supermarket half a mile away. It will be located about 10 feet from my bed and closer to my son's. Anyway, there was a lot of info to digest. We had to learn it all flawlessly. By the time we were done the physical therapist came by our bed to give us an update. If I have one more doctor tell me my son was born too early I'm going to deck them. I know he was born early. When I ask for comparisons to other kids, I mean other kids born at under 26 weeks gestation. I know they exist, some of their parents are reading this blog. Anyway, he's fine for his situation but there are a couple of exercises they want us to do. While we were at the class, Jordan went in for his procedure. By the time the therapist is there he is back. I know I made the right choice, but he got some payback later. We run out to the store to pick up a few things we need. We somehow spend $100 on stuff we absolutely need before homecoming - but we feel no more prepared than before. Do you know how much formula goes for these days? That stuff has a street value higher than cocaine! We finally get back to the hospital and it's time to spend the night with our son for the first time. There is a special room with beds and a TV and designed to make you feel as if you are at home. Now picture us - the new family curled up on the couch. Mother gently holding baby as baby coos. I have my arm around the mother of my child beaming with pride and anticipation. Sounds just like a commercial doesn't it? Well it is. The reality is my son has just been subjected to the first surgical procedure of his life, and if I may say so, it's in the least desirable area you want to be cut. He is pissed at the world and is letting us know it. ALL NIGHT LONG. He spent more time crying for us in the last 24 hours than we have seen the rest of his life. He gets maybe 90 minutes of quiet sleep in 11 hours. On top of that the darn apnea sensor is giving false alarms until midnight (he has never stopped breathing). That thing at 2am sounds about as loud as a car horn. Between the fussy baby and false alarms The Mama Ali decided at about 3:30 to just skip the bed, pull up a recliner and sleep next to the crib. The best part was at 8 am when she climbed into bed. I have seen people tired before, but never actually seen anyone fall asleep as their head hit the pillow. There was only one thing funnier. My son has never left the NICU, never even seen the outdoors, has no concept of time. How does he know to fall asleep at sunrise?!?!

I want to thank all of the other micro preemie parents who have helped us through a very difficult time. When I first started back to work in July after the baby was born, I was in a daze. I a supposed to be a provider, or protector, or something. My wife is at home recovering from a birth she didn't want. My new baby that was supposed to be born on election day is born on my 30th birthday (July 9th). I was not capable of concentrating on work. I was half mourning and half pissed at the entire world. I had everyone at work tell me it was going to be OK, but the doctors telling me the exact opposite. It wasn't until I googled micro preemie blogs that I finally found people who understood. I admit that if this hadn't happened, I wouldn't have made that search, but I value the support and encouragement for each and every one of you. I have been too busy this week to visit every blog and thank you individually, but I want you to know my wife and I have seen every comment and appreciate them all. The relationships we have formed will not end on Tuesday either. Every week I check on Serena, Hallie, Edwin, Kaitlyn, Michael, Ashton, Logan, Cooper and everyone else. I know you guys care enough to keep checking in on Jordan too. I have a million things that I need to do over the coming weeks and months and I promise I will keep updating everyone on Jordan and his amazing journey.

The damn bursts...

I remember in August when we would talk to each other about the baby. We'd talk in the car on the way home or sit on the couch and hold hands. We'd say that we were going to buy this, and fix that. We'd clean the carpets, and baby proof every sharp edge in the house. We'd spend a bazillion dollars to do the nursery. We'd spend a jillion hours holding the baby. We would do everything so that when he comes home eveything would be perfect. I'd take my wife out for a romantic dinner at a fancy restaurant one last time before we were full time parents. Reality can be tough. We spend so much time travelling to the hospital, we don't get home until 9 pm. We have scheduled about 4 hours worth of shopping into a 90 minute window today. We have carpet cleaners coming tomorrow, pesticide on Monday. We have to spend all day Sunday just cleaning. Yesterday, my two dogs went to the groomers. The min-pin hasn't been to the groomers since the day before our 2001 wedding. We don't know how much time is left, but it won't be long. Yesterday we bought in the car seat and he passed that test. Today we have CPR and class on his oxygen tank. Tonight we room in with him overnight to practice what we learn. We don't even know when he is coming home, just that it should be less than a week.

I want to thank some other people quickly. I am writing this from the Ronald McDonald House next to the hospital. I can't thank these guys enough. For those who don't know, RMH is for the families of sick kids to have a place to stay. Some stay for weeks. We usually stay a night. The staff has always been great to us and have always given the appearance of caring deeply about us and the baby. Back in August when everyone wanted to help, I didn't know how anyone could. These people helped us by giving us a place to stay, a clean room, and home cooked food (no, it's not leftover burgers and fries). The next time you happen to eat at McDonalds, just drop some pocket change into one of their little RMH displays. I know that you may not think it makes a difference, but Jordan is living proff that it does.

Parole Hearing

I know why all of you are reading this and yes, I’m happy to report my toothache is gone. Also Jordan’s diuretics failed. The medicine was supposed to get rid of some excess fluid in his lungs and let him breathe a little easier. It did get rid of a little fluid, but he isn’t breathing any better. He still needs oxygen in order to breathe. It’s become clear that his problems are beyond their control. He will just have to outgrow it. That will take much longer than anyone is willing to pay for, so he is about to be sprung from the big house. Dr. Warden has agreed to parole the prisoner, but he must meet several conditions:
1. They will start feeding him all bottles today. He needs to do well for at least a week.
2. He has been put on a lower oxygen flow which he must continue to tolerate.
3. His parents must complete a CPR course and learn how to operate the machinery he will go home with (Friday).
4. He will stop his diuretics this week and needs to tolerate that.
5. He must not shank any of the other prisoners.
We don’t have an exact date yet, and it will be determined largely by him, but we hope he can be home by his due date 11/3/07. I have been waiting to do this blog entry for months and you know what? We are very happy - happier than we’ve been since we purchased our house. We are not ecstatic. I thought when we went home I’d start crying or jumping up and down. When the social worker said we need to take our classes the first thing I thought was, “I wonder if my boss wants me to take off Friday or Monday?” The mama Ali and I spent half the evening talking about all of the preparation we need to finish this month. That brings up a good question that I need comments on, particularly from other preemie parents. We have two small lap dogs that weigh about 20 pounds combined. One of them is a short haired dog that sheds a lot. Obviously we keep them out of the nursery and away from the baby. However, they live in the house. Would that harm him if he isn’t allergic?

I am going to try something out over the next few blog entries. I have a lot of people to thank over several entries. It’s in no particular order of importance, but it needs to be done. Most of you don’t care and shouldn’t. It’s like watching the Emmys and giving a crap who the person wants to thank. As a result when I say ‘I want to thank’ someone, you may continue reading if you wish, but after that point the rest of the blog entry won’t have any news about Jordan. That way, if you think you’re on the list you can choose to keep reading. If you only care about reading about Jordan, you won’t miss anything. So first, I want to thank our employers. This whole thing started out of no where. The mama Ali left her job at 8 am and was in the hospital by 11 am. I have missed more work days this summer than I have missed in any other job. We have both had to change our work schedules, and with the dozens of doctors appointments left in 2007, it will be a while before we can get back to our old hours. We can’t fully explain how much we appreciate your flexibility and your help. Jordan thanks you as well.

Spoiled Rotten

Jordan has done 2 new things this weekend. They were both absolutely adorable. First, he smiled. He was asleep and didn’t consciously do it. He was not responding to anything we did or said. He was just exercising his face muscles, but he did smile. He did it several times during all 3 days, and was asleep every time. It was so adorable. I don’t know when he will do that on purpose, but that will be a very good day. Jordan has also exposed a little bit of personality this weekend. I used to think that he hated getting his diaper changed. Heck, I’m sure he used to hate it. Not the case anymore. When we change him now, it is an absolute formula. He wets himself. We open the diaper. He goes all stiff. He tenses his tummy and kicks his legs straight out. It’s as if he tenses every muscle below his hips. He starts frowning and twisting his body around. He does not relax until he passes gas – or passes something else. There have been several times when we have gone through 2 or 3 diapers in one changing. There were two times this weekend where I changed a wet diaper and got him back in his clothes only to hear evidence that it is unlikely that he was still wearing a clean diaper. He doesn’t like to stool until he is naked. He sometimes does stool with a diaper on, but the only time he tries to stool is when he has no diaper. I have started to just unfasten the diaper and give him a good 30 seconds before I open it up. As soon as he is done with his work, he gets this look of peace and serenity on his face. I get a look of surprise and horror.

I don’t know when it happened, but I have become spoiled rotten. I have somehow gotten the idea that a good day is a day when he moves forward. 2 months ago, a good day was a day when he did not move backwards. A good day isn’t a day when they lower his oxygen flow. A good day is when they don’t have to raise it. He is on the same oxygen flow as he was a week ago – 1 liter per hour. He is on the same feeding schedule as a week ago – bottle every other feed. He is in a crib this week rather than a isolette. In the last 5 days he has gained an ounce despite the diuretics. He has even outgrown his hats. He isn’t home yet, and might not be any closer than yesterday, but check out the post from 2 months ago and look at what the definition of a good day used to be.

See you later isolator!

There were two steps forward and two steps backward. Jordan was quickly put onto all bottle feeds yesterday. We weren’t expecting that until next week, but he has been feeding well, so they tried him out. He has been feeding more than the minimum and seems to enjoy the eating. When we hold him in the proper position he does the cutest thing. He starts puckering and even making the sucking motion before we even give him the bottle. He knows when it’s time to eat. As I mentioned last month, his doctor gives a special treat when babies take all of their food by bottle – she moves them into a crib! Jordan is in a little NICU crib, but it’s really it’s about the size of a cradle. I have been looking forward to this moment for so many months, that yesterday I just realized that I didn’t want it. It’s kind of like people who say they look forward to Fridays. No one looks forward to working Friday, they just look forward to leaving work on Friday. I wasn’t really looking forward to him getting into a NICU crib, I’m looking forward to him getting out of a NICU crib.

Of course we must remember the two steps back as well. First of all is the breathing. They had to increase the oxygen flow a couple of days ago. He’s been having a lot of bradycardias (bradys) where is heart rate dips too low for a minute. That means his breathing needs to be improved before we can move forward. The head nurse thinks that he probably just has a lot of fluid in his lungs. This isn’t a sudden thing and it’s not a crisis that requires him to go back on the vent. They are just going to give him some medicine that makes him urinate more. If he pees more, he retains less fluid. He may lose some weight this weekend, but if this works he will breathe much better. If it doesn’t work, then they will have spent hundreds of dollars of medicine to make a kid pee when the kid already knows how to pee. As they have fed him more this week, he has had more bradys. Last night the nurse said enough and put him back on tubes for every other feeds. That is also a part of the reason that they had to turn up the flow. So technically, he is in the cradle, but eating less than he was on Wednesday. They just want to give him a rest for a day or two before going back on the bottle. Essentially, he needs to breathe a bit better and then we can start moving forward.

My son has been in the hospital for over 3 months now. I want him home. The mama Ali wants him home. You want him home. Rest assured that as soon as we know something about that I will post it. He is closer, but right now if I ask the doctor when he can come home, she will just start talking about his breathing and lowering his oxygen. We want Jordan to be paroled from the big house, but we still don’t know when it will happen. If we can fix the breathing with the urination then we will know something really soon.

PICNIC

Of course he is totally adorable. I know that I have never posted a picture of him feeding before, but I want to see if you noticed the problem with the feeding. I'll give you a hint. PICNIC - problem in chair, not in child. Try drinking a beverage with two straws right next to each other. Like it or not, you're going to get some air that you don't want. Well as you can see Jordan is eating from a bottle, and he still has in the feeding tube. I have been complaining for some time now that he has been sucking inefficiently. He has gotten the job done, but he had to work too hard for too long. Saturday night I fed him 1.5 ounces like in the picture above and it took 40 minutes. To make matters worse, they tape the tube onto his chin. He gets a few drops onto the chin which ruins the tape and the tube starts to slide out. We keep sliding the tube in because we think it's easier for him to leave the tube in rather than inserting a tube every 6 hours. On Monday we finally get tired of the tube and let it stay out while we feed him by bottle. No more inefficient feedings. Tuesday we feed him 2 ounces in under 20 minutes. He now does so well that they have changed the rules for feeding him. First, they now give him a bottle 2 out of 3 feeds. He was bottling every other feed. Before, they fed him 1.5 ounces. Now they feed him a minimum of 1.5 ounces. If he wants more, he can have more. We're talking about an extra half ounce so obesity isn't a concern, but it will help him grow a little more.

We are first time parents, and we had to wait two and a half months before we could put clothes on Jordan. This was the first time he wore clothes. We were so happy just to have a chance to dress him that we made a bad choice. If he was wearing yellow fishing hat he would look exactly like Paddington bear. We took this picture on 9/21. That was the last time we dressed him in this outfit. Now he looks like a baby, and not a bear.

We took this picture on 10/4. Yesterday was 10/9 - but this was the most recent picture we have taken. I included it because it is the closest to his current weight - 5 pounds! My son weighs 5 pounds! He was 3 months old yesterday and he celebrated by hitting 5 pounds! The Paddington bear picture was a full pound ago! The hat he's wearing was made by my mom. It used to be big on him, but now it fits. Check out the picture I posted of him on 9/16. It's the same hat!

Forbidden Love

I went out on a date Friday night. It was a new experience for me, dating a man. I don’t have a problem with those who do it, and after trying it myself I can honestly say that I will do it again. Of course I thought my wife might have a problem so I had to keep it from her. We were staying at the Ronald McDonald house so we were already in town. At 2 am I climbed out of bed. I threw on a pair of shorts and snuck out of the room. I wanted to meet him out at a restaurant or something, but nothing is open at that time downtown, so I just met him at his place.
I weigh over 200 pounds in large part because of what I eat. He is on one of those liquid diets in those self help books. He drank about one and a half ounces, and he weighs under five pounds. The odd thing is that he’s mostly short. For someone who eats so little he sure was chubby. After dinner, he burped on me. I have to admit that we spoke for a while after dinner, but I dominated the conversation. To make matters worse, I spent the entire time with my date talking about my wife. I felt kind of foolish, but he was a really good listener. After a while we just sat there holding hands.
I don’t know how it started, but before I knew it, I laid him down on the bed and was taking his clothes off. I won’t go into too much detail on this family blog, but WOW! When I removed his pants all I could think was ‘How did something so big fit into a space that small?’ I was both afraid and impressed. Needless to say, we ended up sleeping together. He was on top. He grabbed my nipples – hard. I’ve been around the block a few times, but he shared bodily fluids that I never seen before. He was tender. He was caring. He loved me.
Eventually, it was time to leave. When I told him I had to go, he didn’t complain. He understood I had a wife waiting for me less than a mile away. It broke my heart to leave him, but the world we live in would never accept our relationship. I love him so much. I gently kissed him goodbye. I think he defecated on himself. I can’t wait until I get to see him again.

Doctor Mommy

You would all have been very proud of the mama Ali this week. Jordan has spent a lot of time maturing this week. The mama Ali has matured also. Feeding for Jordan of course burns a lot of calories for such a little baby. It would be easier if he was 7 pounds, but he’s only 4.5 pounds. As a result, he usually desats when he feeds, using up the oxygen in his blood. The nurse usually increases the flow in order to compensate. After the feeds, the nurse usually slowly turns the flow back down as he recovers and rests. I say usually because the mama Ali has started doing it now. Jordan has too much oxygen, she turns the oxygen down. Too little, and she turned it up a little bit. She hasn’t been doing this much – maybe 4 times this week, but she was doing it and new she was doing it. In fact, she looks around and asks me if there are any nurses around before she does it. Yesterday after feeding the baby he was sleeping on my chest. Of course the oxygen was too high as he fell asleep and the alarm went off. It was loud enough that it could have woken up a normal kid (the only thing that wakes up Jordan is a doctor’s exam). The mama Ali got up, looked around, silenced the alarm, and turned the oxygen down. This is the same woman that won’t let me take the tags off of the mattress. The nurses typically don’t mind her doing this in part because they have no idea that she’s doing this. In fact, they would probably put here in NICU prison if they caught her. I know one thing though. Just like you don’t get between a mama bear and her cub, I don’t get between a mama Ali and her baby.

As I mentioned above, it is possible for his oxygen to be too high. This is because too much oxygen for too long can make the ROP worse. Luckily, the doctor said that his ROP has not changed – not better, but not worse. He is also swinging on his sats again. I think there are two main reasons for this. First of all, he takes half his food by bottle. It takes a lot out of the little guy. Also, now that he’s a big kid they are making him spend more time on his back. Not a whole lot, just more than usual. He hates that. He can turn his head and move his limbs, but he isn’t turning over until 2008.

I want you to try an exercise with me. Imagine you work in a cubicle in a large room full of cubicles. There are people in every cubicle. Some are typing on the computer. Others are talking to each other. There are phones going off every 30 seconds. Imagine all of that background noise. Now try to take a nap. Now you have the idea of what the NICU sounds like. Not loud, but not quiet. Jordan has been in this environment exclusively for 88 days now. Even in his isolette, he has never experienced silence. Go back to that cubicle and turn off the fluorescent light directly above you. Do not turn off the fluorescent light in the hallway behind you. You now have an idea of Jordan’s version of darkness. He is going to have trouble redefining the terms silence and darkness when he comes home. It may well be too dark and quiet.

Two Kilos, Two Chins

I rarely post on consecutive days, but man what a day! Jordan is now 4 and a half pounds! In less than a week he gained another half pound. I mean look at the picture. He’s fat! Not super obese or anything, but he has a double chin. I know several of you will get mad when I say this, but he’s starting to look like a normal baby rather than a preemie.

Also, he has been moved up to 1.4 ounces per feed. I know that they are not in any rush, but the bottles they use in the NICU only go up to 2 ounces. They are also giving him bottles every other feed. He sucks pretty actively, but he hasn’t really coordinated the action that well. As a result, he works harder than he should in order to empty the bottle. He does get it done, but he is kind of inefficient. It’s kind of like drinking a liter through a straw. It can be done, but it is better to just drink. The only bad thing right now is that he is still swinging again on his breathing. The good news is they haven’t had to raise the settings. The bad news is he won’t get it turned down anytime soon either. Anyway, yesterday was a good day. I can’t wait to see how he does over the next week.

It's all about love

Jordan does this weird thing every few days. He’ll take about 3 or 4 days and gain an ounce. Then one day he’ll gain an ounce. Then the following day he’ll shoot up and gain some unbelievable amount. Last night was that night. The nurse checked 3 times, but it’s official, he’s 4 pounds 6 ounces – about 2 kilos. I expect that he won’t gain much more tonight, but that’s really up to him. Other than that, Jordan is doing well, but this blog entry isn’t really about him.

It’s about his parents. I know most of you. I know that most of you care about us, and we care about you in return. I also know that there will be times when we disagree about how things are going to be when Jordan comes home. Some will criticize our parenting. Some have been criticizing the parenting of others since before I was born. Some have been criticizing my parenting for over 5 years (my son will be 3 months old next week). We can handle all of that. However, my concern is not our critics. My concern is Jordan and his health. My little boy is going to come home – I can say that with a high level of certainty. However, he was born too early and will have some consequences for most if not all of his life. The main one is his lungs. He will be at high risk of respiratory problems for quite some time. Over the next year his biggest obstacle will be RSV.

RSV is a virus that isn’t much of a problem for adults. In normal babies, RSV acts like a bad cold. In infants with bad lungs like Jordan’s, it could put him in the hospital. In order to avoid RSV when he comes home, we will have to take special measures. We can’t just pass him around like a hot potato and let everyone cough on him without precautions. We don’t know all precautions that need to be taken yet – we’ll find out from the doctor and hospital soon enough. When we start doing it, it will be more restrictive than a regular kid. It’s not just going to be washing hands, but much more. We won’t have many guests over as we would like. There will be times when we keep him at home even though he isn’t sick. Many of you will get upset when we make you scrub up to your elbows. The mama Ali doesn’t let me cough around the baby now while he is in an isolette. She will not let anyone else with a cough into her nursery. If you don’t believe me, try it. It’s about about our love for Jordan and his health.

When this occurs you may call us many things. You may say we are spoiling him. You may say we are coddling him. You might say that you didn’t do that with your baby and she turned out fine. You might possibly call us over protective. Whatever you do call us, I won’t care as long as you don’t call us while we are back in the hospital.

A Tale of Two Nurses...

Jordan was taken off of the high flow cannula and put onto the low flow cannula. His lungs have been steadily maturing and it shows by the flow of oxygen he is getting. I won’t go into the gory details, but when he was put onto the CPAP he was getting 5 liters of oxygen per minute, now he gets one. They can still turn down the flow on the cannula further, but after they remove the cannula he will breathe room air.

Let me first say that we have never doubted the competence of the hospital or it’s staff. If we felt that any nurse, doctor, or specialist was not capable of caring for Jordan, we’d ask for someone else. That being said, he had 2 nurses of the weekend that made for a rough weekend. First of all is the day nurse. A kind woman overall, but a bit on the conservative side in the way she cares for Jordan. Jordan is supposed to get 37 ml of food when he bottles. He rarely wakes up when he feeds though. Most of the bottling occurs while he sleeps. The day nurse will feed him, and keep feeding him until he stops. Sometimes this happens before the bottle is empty. The night nurse will feed him, but won’t take no for an answer. The baby is to get 37 ml by bottle, and she makes sure he gets it. She will move the bottle around, change nipples, beat him on his back, throw him up in the air – whatever it takes. She gets him to finish his bottle. However, the night nurse doesn’t like when we pick him up to hold him. He is still hooked up to sensors and oxygen and other stuff, but after 3 months I know where everything is and am careful not to break it. Other nurses realize that as new parents we want to pick him up ourselves and care for him as we see fit. The night nurse insists we sit down and she will come over and hand him to us. I want to pick him up. I want the mama Ali to pick him up. We know how to do it. He can handle the stimulation. Back away from the baby – I’ll call you if I need you. You can see the problem I have with both nurses, they don’t care for Jordan the way that I would if I were in charge. I would go to school to become an RN so that the hospital would let me care for him, but it would take more than a couple of months. The baby is healthy, but he needs to be healthy my way.

Finally, we worked on the nursery this weekend. Nothing special happened, but the room is starting to come together. I only mention it because just as I watch Jordan develop, the room is developing too. If everything goes well, they’ll both be ready before too much longer.