Last night, Jordan weighed in at 1006 grams. That’s just over 1 kilo! For those of you that aren’t drug dealers, that is 2 pounds 3 ounces! He was 898 grams Sunday night and got to 1006 grams by Thursday night. That is over 10% of his body weight in half a week! The doctors celebrated by raising his feeds up to 7 cc’s every hour. I remember when they started him that he started at .5 cc per hour. I think we are actually starting to bother the nurses. We call 3 times per day just for the nurses to tell us that he’s sleeping, pooping, and desatting. You know you are a father when you ask a person you just met what the baby’s poop looks and smells like.
At least, they have a handle on what has been aggravating the desatting this week. The inside of his nostril is irritated. He can’t clear it out yet, so they suction him a couple of times per day. Everytime they suction him they get a little scab which partially blocks his airway. Well, whenyou have a scab and pick at it, what happens? It comes back, usually bigger. They can’t do nothing and leave the nostril blocked for a week, but if they keep suctioning, his nasal passages will only get damaged more. They are thinking of using a local steroid, which may help. The nurses and doctors will discuss after everyone checks on every other baby in the NICU and has a nice relaxing lunch, followed by a nap. I am writing this Friday morning. I fear that they won’t act until Jordan sits up, walks over to the counter and grabs a box of kleenex – about 5 years from now.
The blog has new rules now based on what the nurses said. On Wednesday, one of the nurses told us to get some clothes! Wearing clothes right now would interfere with the temperature sensors, but they think he should be ready by the end of September. I have long since felt that he has been getting better, but when the nurse tells us to take such a big step, that means a whole lot. Now, we can talk about more than 3 days, we can talk about the next couple of weeks.
In fact, we are going to start setting up the nursery this weekend. We will only be able to work a few hours each weekend, so we won’t be done until October. That is the earliest he comes home, but November is more realistic. His due date was Nov 2nd. If everything goes absolutely perfect, he could be home by Halloween. More likely is that he has a problem with breathing or eating and might be delayed. Just check out what happened with Kaitlyn. She was a very healthy baby that had soooo much trouble eating. I have never seen a mother so happy when her daughter ate a spoonful of yogurt. I was pretty darn happy too.
Friday, August 31, 2007
Wednesday, August 29, 2007
My kid doesn't suck.
We got to kangaroo a couple of days ago! You know how he cried earlier with the wet naps? Well guess what happened? (Insert humorous story here) I would love to be like tha parents of the other blogs and tell you the baby burped or something, butnothing interesting happened. Don’t get me wrong, it was fun and amazing and I will do it again the next time I see him, but not funny. We have had a different day nurse for 3 days in a row now, and the one who let us kangaroo was the right nurse on the right day. Some nurses are all about putting the baby in bed and letting him sleep all day. I’m down with the sleeping, but golly! The doctor says that we can kangaroo when Jordan is stable. That means when Jordan is stable, it’s time for the nurses to baby up!
You want to know how young he is? We have started to give him a properly sized pacifier. He doesn’t like it. He’ll suck for about 30 seconds, but then push it out. He doesn’t cry or fuss or teeth, so he doesn’t need the pacifier yet. However, we need to get him used to it pretty soon. We don’t need him to necessarily use the pacifier, but we’ll need him to learn how to suck so he can eat from the bottle. He isn’t behind schedule or anything, but he needs to be able bottle before going home. One thing that I can say to most people reading this. Your kids suck more than my kid. Terri, your kid sucks. Trisha, your kid sucks. Mom, your kid sucks. My kid doesn’t suck.
The nurses moved him to the isolette last night. He is not desatting as much or as badly, but he has started playing a little game. The amount of oxygen in the blood is the percent of his saturation. For you and me, we can keep it above 90 when we are healthy without any effort. The doctors want to keep him about 90 which he can usually do. However, the alarms don’t go off until he gets above 95 or below 85. Every once in a while though, he’ll go down to 80 or even 70. He’ll get the alarm going real good which brings the nurse over – then he brings it back up on his own. I have literally seen him go from 100 down to 80 and then back to 100 in a minute flat. The mama Ali hates it when I say this, but I think he just flirts with the nurses to get attention. He has already figured out how to get the women to answer his every beck and call. He is going to make a fine Morehouse man one day.
You want to know how young he is? We have started to give him a properly sized pacifier. He doesn’t like it. He’ll suck for about 30 seconds, but then push it out. He doesn’t cry or fuss or teeth, so he doesn’t need the pacifier yet. However, we need to get him used to it pretty soon. We don’t need him to necessarily use the pacifier, but we’ll need him to learn how to suck so he can eat from the bottle. He isn’t behind schedule or anything, but he needs to be able bottle before going home. One thing that I can say to most people reading this. Your kids suck more than my kid. Terri, your kid sucks. Trisha, your kid sucks. Mom, your kid sucks. My kid doesn’t suck.
The nurses moved him to the isolette last night. He is not desatting as much or as badly, but he has started playing a little game. The amount of oxygen in the blood is the percent of his saturation. For you and me, we can keep it above 90 when we are healthy without any effort. The doctors want to keep him about 90 which he can usually do. However, the alarms don’t go off until he gets above 95 or below 85. Every once in a while though, he’ll go down to 80 or even 70. He’ll get the alarm going real good which brings the nurse over – then he brings it back up on his own. I have literally seen him go from 100 down to 80 and then back to 100 in a minute flat. The mama Ali hates it when I say this, but I think he just flirts with the nurses to get attention. He has already figured out how to get the women to answer his every beck and call. He is going to make a fine Morehouse man one day.
Tuesday, August 28, 2007
...And then there were Pictures
This was a picture from early August. He was still on the vent...He was so small.
This was a day I'll never forget. August 9th. One month to the day he was born, he was off of the vent and this is the first family photo.
This was the best photo of him from the 9th. A special moment.
This was a picture of my nose. We included the baby to show perspective. This was my first kangaroo care. You can also see him wearing the CPAP for the first time. It looks complicated, but it's just blowing oxygen up his nose.
Mother and baby doing the kangaroo. I don't know who enjoyed it more. Her, him, or me?
Monday, August 27, 2007
Double Pounder!
Every Sunday night, they measure Jordan’s length. He is now 14 inches – three full inches longer than at birth. They also weigh him every night. He is 898 grams. That’s 2 pounds! The doctors celebrated by upping his feeds. Actually, they didn’t celebrate at all, but they did up his feeds. He is eating so much now that they apparently have stopped bothering to tell us. They used to tell us when they upped his feeds. Now we don’t find out until either we ask, or we get there and see the machine. In the past, I said that one shouldn’t look more than 2 or 3 days in the future. However, things have been going so well lately, that we now talk about the upcoming week. The mama Ali and I talk about what will happen during the next week. If our doctor wasn’t on vacation, we’d ask her what we could expect during the next week. Right now, I am looking forward to seeing how much they’ll be feeding by the end of the week. He gained over 100 grams during the last week and now they are feeding him more.
In the NICU, nurses work with 2 babies for each 12 hour shift. Nurses usually work 3 days a week and usually keep the same baby for the entire 3 days. I don’t like the day nurse that started yesterday. She didn’t let us hold the baby yesterday. The reasoning is actually so bass ackwards that I had to share. We didn’t get to hold the baby because he was doing so well, she didn’t want to disturb him and risk him desatting. I guess that means that this nurse won’t let us hold the baby until he’s doing real crappy. Maybe if Jordan gets a real bad infection and gets back on the ventilator she will let us kangaroo! If I can’t hold the baby when he’s doing well, and I can’t hold him when he’s doing bad, then when do I get to hold him. This isn’t a political blog, but I swear I know what party this nurse belongs to. All I know is that if we don’t get to hold the baby until Wednesday, I’m going to tell the doctor on her!
In the NICU, nurses work with 2 babies for each 12 hour shift. Nurses usually work 3 days a week and usually keep the same baby for the entire 3 days. I don’t like the day nurse that started yesterday. She didn’t let us hold the baby yesterday. The reasoning is actually so bass ackwards that I had to share. We didn’t get to hold the baby because he was doing so well, she didn’t want to disturb him and risk him desatting. I guess that means that this nurse won’t let us hold the baby until he’s doing real crappy. Maybe if Jordan gets a real bad infection and gets back on the ventilator she will let us kangaroo! If I can’t hold the baby when he’s doing well, and I can’t hold him when he’s doing bad, then when do I get to hold him. This isn’t a political blog, but I swear I know what party this nurse belongs to. All I know is that if we don’t get to hold the baby until Wednesday, I’m going to tell the doctor on her!
Saturday, August 25, 2007
Kangaroo Care
I know that you have been interested in the results of the ROP. The doctor couldn't find any, but that may be a result of his size, making him unable to get an accurate result. They'll retest in 2 weeks. An interesting bit of trivia for you. Stevie Wonder was a preemie and his blindness is from the fact that there was no effective treatment for ROP 50 years ago. Today, there are a great many treatments, so it is unlikely that will happen to Jordan. At any rate, we can say for sure he isn't blind now.
Kangaroo care is when they place the baby wearing nothing but a diaper directly onto the parents bare chest. The skin to skin contact is supposed to be comforting for everyone involved. We got the chance to do that today. Of course, that's the type of thing I thought the mother should do first. Of course, she loved it, and almost fell asleep because she was so relaxed. Jordan loved it more. At first he was awake, looking towards me because he's too small to look up. Then he chirped for a few minutes as he hasn't ever cooed or gurgled or any of that other stuff. Then he fell soundly asleep. They were able to stay like that for over 45 minutes!
However, all good things must come to an end. Eventually, we stopped and decided to do the chores before putting back to bed. Chores are things like blood pressure, suctioning mucous if needed, using the vibrator, and all the other things that involve touching him. You try and do everything all at once so that he can spend the next 4 hours sleeping without interruption. Anyway, I got to change the diaper. He wasn't really messy, but I figure that this is my son, and any real father knows that it is important to keep that area as clean as possible. Now remember, he just spent 45 minutes lying on mom being cozy and warm. Now I've got him naked, lying on his back, and for good measure I decide to use the wet wipe to make sure that the twins are wet and cold. As soon as I get the wet wipes on him, I promise you that he opened his eyes, looked at me and said, "Dad, WTF?!?!" Of course, he's only 7 weeks old so it came out as the first time that his mother and I heard him cry. Not a little chirp, not some sort of preemie murmur. All real cry like what real babies do! It made us feel like real parents. Of course now I'm conflicted. On one hand I want to make him cry tomorrow so that I can hear it again. On the other hand, the twins should be off limits shouldn't they? I need some fathers to leave me comments on this one.
Kangaroo care is when they place the baby wearing nothing but a diaper directly onto the parents bare chest. The skin to skin contact is supposed to be comforting for everyone involved. We got the chance to do that today. Of course, that's the type of thing I thought the mother should do first. Of course, she loved it, and almost fell asleep because she was so relaxed. Jordan loved it more. At first he was awake, looking towards me because he's too small to look up. Then he chirped for a few minutes as he hasn't ever cooed or gurgled or any of that other stuff. Then he fell soundly asleep. They were able to stay like that for over 45 minutes!
However, all good things must come to an end. Eventually, we stopped and decided to do the chores before putting back to bed. Chores are things like blood pressure, suctioning mucous if needed, using the vibrator, and all the other things that involve touching him. You try and do everything all at once so that he can spend the next 4 hours sleeping without interruption. Anyway, I got to change the diaper. He wasn't really messy, but I figure that this is my son, and any real father knows that it is important to keep that area as clean as possible. Now remember, he just spent 45 minutes lying on mom being cozy and warm. Now I've got him naked, lying on his back, and for good measure I decide to use the wet wipe to make sure that the twins are wet and cold. As soon as I get the wet wipes on him, I promise you that he opened his eyes, looked at me and said, "Dad, WTF?!?!" Of course, he's only 7 weeks old so it came out as the first time that his mother and I heard him cry. Not a little chirp, not some sort of preemie murmur. All real cry like what real babies do! It made us feel like real parents. Of course now I'm conflicted. On one hand I want to make him cry tomorrow so that I can hear it again. On the other hand, the twins should be off limits shouldn't they? I need some fathers to leave me comments on this one.
Thursday, August 23, 2007
Touchdown!
Last night, I got to hold Jordan for the first time! This is definitely one where other people can relate. Remember the first time you held your first born child. My turn was yesterday. It is so nice when we get to do things that normal parents do. He was comfortable and didn’t fuss or anything. He was about the length from my palm to by elbow. He fit in my forearm just like a football, but I shudder to think what would have happened if I fumbled. I was wearing a mask because I'm still recovering from my cold. Better safe than sorry. The worst part was when I had to hand him back to the nurse and go home. It is getting less emotional when we leave the hospital and we know that everyday is a day closer to coming home.
He has been gaining weight at a pretty decent clip this week. As mentioned below, he had lung problems over the weekend, and they responded by giving him medicine to make him urinate. He lost weight on Sunday, but since then, he has gained over 3 ounces! Right now, he is up to 1 pound 13 ounces. His lungs are doing fine for the moment and have seemed to resolve themselves. Not a miracle or anything, just caffeine. It is a stimulant that helps the heart and lungs. Obviously not something to give him long term, but it can do wonders when he’s having a bad day.
Today’s vocabulary term is ‘Retinopathy of Prematurity’ or ROP for short. When babies are born early, the eyes haven’t finished developing properly. For reasons still unknown to science, when preemies are born early, the blood vessels grow irregularly and this can cause vision problems. In the mildest cases (Level 1), it can resolve itself without any intervention by the doctors. In the most severe (Level 5), it means blindness. In between, there are many treatments including lasik surgery while still in the NICU. He will have his first test for ROP today. The question is not whether he will have it, over 90% of kinds born that early do. The question is how severe. Most likely is that they will observe for a few weeks or months before they do anything. Just one more hurdle to clear before he can come home.
He has been gaining weight at a pretty decent clip this week. As mentioned below, he had lung problems over the weekend, and they responded by giving him medicine to make him urinate. He lost weight on Sunday, but since then, he has gained over 3 ounces! Right now, he is up to 1 pound 13 ounces. His lungs are doing fine for the moment and have seemed to resolve themselves. Not a miracle or anything, just caffeine. It is a stimulant that helps the heart and lungs. Obviously not something to give him long term, but it can do wonders when he’s having a bad day.
Today’s vocabulary term is ‘Retinopathy of Prematurity’ or ROP for short. When babies are born early, the eyes haven’t finished developing properly. For reasons still unknown to science, when preemies are born early, the blood vessels grow irregularly and this can cause vision problems. In the mildest cases (Level 1), it can resolve itself without any intervention by the doctors. In the most severe (Level 5), it means blindness. In between, there are many treatments including lasik surgery while still in the NICU. He will have his first test for ROP today. The question is not whether he will have it, over 90% of kinds born that early do. The question is how severe. Most likely is that they will observe for a few weeks or months before they do anything. Just one more hurdle to clear before he can come home.
Tuesday, August 21, 2007
Evicted from his house.
Well, last night they took him out of the isolette. He isn’t on the vent, but he needs too much attention from the nurses to use the isolette right now. Part of his right lung has collapsed making it hard for him to get in enough oxygen. This isn’t the end of the world for those of you who have never had a kid in the NICU. He has had parts of his lung collapse before, and they can treat it fairly easily. Babies this age don’t have the strength to keep this open on their own, and the staff has to treat every kid for it. They just have to change his treatment from what it was before. He’s back under the warmer so the nurses can reach him easier. The nurses and doctors have been good so far – so I know they will be able to handle this easily.
There is one thing about the medical staff I don’t like though. They don’t treat everything as if it’s the end of the world. When Jordan’s lung collapses, I want a damn nurse sitting by his bed threading a tube into his chest and manually inflating it until I tell them to stop. A couple of nights ago, he didn’t gain any weight. I wanted to blend up some greasy fried chicken and put it in his tube. The doctor wanted to wait and see what happens! The same thing happens when he desats. I would like to keep my hand on the oxygen dial and manually change the settings as his readings go up and down. The nurses want to leave the damn settings alone for 5 or 10 minutes and go check on the other baby. I don’t stay up at night worrying about other babies! Friday was a good example. Jordan’s feeding tube was empty, and the other baby wasn’t breathing. Guess who had to wait 15 minutes to eat?!?! What can I say? I’m a caring bastard.
There is one thing about the medical staff I don’t like though. They don’t treat everything as if it’s the end of the world. When Jordan’s lung collapses, I want a damn nurse sitting by his bed threading a tube into his chest and manually inflating it until I tell them to stop. A couple of nights ago, he didn’t gain any weight. I wanted to blend up some greasy fried chicken and put it in his tube. The doctor wanted to wait and see what happens! The same thing happens when he desats. I would like to keep my hand on the oxygen dial and manually change the settings as his readings go up and down. The nurses want to leave the damn settings alone for 5 or 10 minutes and go check on the other baby. I don’t stay up at night worrying about other babies! Friday was a good example. Jordan’s feeding tube was empty, and the other baby wasn’t breathing. Guess who had to wait 15 minutes to eat?!?! What can I say? I’m a caring bastard.
Monday, August 20, 2007
One step backwards.
We have been getting spoiled with all of these good days in a row. Yesterday, we were knocked down a notch. Jordan had a bad day. Not super bad, but the worst this month by far. He has congestion – but not fluid - in his lungs. It’s isn’t pneumonia, and in fact he absolutely has no infection as of last night. They think it may be a side effect of his PDA, but he is still too small to close it. They’re not entirely sure what is causing it, but it’s making it hard for him to process oxygen. They have increased the pressure on the CPAP and he has had a bunch of desats. Yesterday, they told us that if he keeps having the trouble, they will put him back on the vent. However, that is actually good news. Technically, he has always defied every doctor’s prediction. They made this prediction about 20 hours ago and he has stabilized since then. He hasn’t gotten better, but he hasn’t gotten worse. He might just be getting tired from all of the exertion lately. He has been breathing better than anyone could expect at 29 weeks gestation with a PDA. While this is very good for lung development, it burns many calories and he has to try harder than you and me to breathe. I expect to hear from the doctor at some point today if they have to put him back on the vent.
When the parents call the NICU, we are allowed to speak with his nurse practically anytime day or night, as long as they aren’t in the middle of giving a treatment. About once per week, we are asked to spell our name because 4 beds away lies baby 'R' with a similar name to us. We’re friends with the parents, and usually spend a few minutes chatting every time we meet. Their baby was born a few days after Jordan, and was about the same gestational age. Their baby hasn’t done as well as Jordan though. She’s never been off the vent yet, and yesterday she had a very bad day. The type of bad day where they call mom in to sit next to the baby for a while. It is scary that a baby that has been in the NICU so long is still so close to not making it.
When the parents call the NICU, we are allowed to speak with his nurse practically anytime day or night, as long as they aren’t in the middle of giving a treatment. About once per week, we are asked to spell our name because 4 beds away lies baby 'R' with a similar name to us. We’re friends with the parents, and usually spend a few minutes chatting every time we meet. Their baby was born a few days after Jordan, and was about the same gestational age. Their baby hasn’t done as well as Jordan though. She’s never been off the vent yet, and yesterday she had a very bad day. The type of bad day where they call mom in to sit next to the baby for a while. It is scary that a baby that has been in the NICU so long is still so close to not making it.
Saturday, August 18, 2007
Now just hold on a minute...
I found my new favorite nurse last night. When she arrived on shift, she saw us sitting next to the baby and treated us like normal parents! She said she would take care of the vitals and then we could hold the baby. We didn't even ask to hold, she just assumed that we would. She didn't know that Jordan desatted the last time and we've been too sick to try again. Of course, I saw my opportunity and asked her if she had a gown for the mama ali to wear. Long story short, the baby was held by the the mother again! Last time the baby was cradled in his mothers arms while lying on his back. This time the baby was held against the mothers chest where he could hear the heartbeat and he's a week and a half older. They were together for over half an hour! They could have lasted longer, but his temp was low enough where he was starting to burn calories to try and maintain.
I knew that he would eventually take a step back at some point this month, but I didn't know how or when. Yesterday he was taken off of the high flow cannula and put on the CPAP. The CPAP looks worse than it really is. It works just like the cannula in that it blows air up the nose so that the lungs don't completely deflate. When the lungs completely deflate, he has to work harder to inflate them again. You and I are good at this, but he isn't. The CPAP just pushes harder than the high flow cannula. It pushes hard enough that it is a mask over his face so that it can stay in place. It looks horrible, but it's still a step up from the vent. It's also exceptionally good for less than 30 weeks gestational age. He will be switching between the high flow and the CPAP until he gets stronger. I am in the middle or recovering from my cold, so I will get to hold Jordan later this week.
I knew that he would eventually take a step back at some point this month, but I didn't know how or when. Yesterday he was taken off of the high flow cannula and put on the CPAP. The CPAP looks worse than it really is. It works just like the cannula in that it blows air up the nose so that the lungs don't completely deflate. When the lungs completely deflate, he has to work harder to inflate them again. You and I are good at this, but he isn't. The CPAP just pushes harder than the high flow cannula. It pushes hard enough that it is a mask over his face so that it can stay in place. It looks horrible, but it's still a step up from the vent. It's also exceptionally good for less than 30 weeks gestational age. He will be switching between the high flow and the CPAP until he gets stronger. I am in the middle or recovering from my cold, so I will get to hold Jordan later this week.
Friday, August 17, 2007
He'll cry if he wants to!
Here’s a question for you. Which one of these is actually kept at Jordan’s bedside? KY Jelly for when they take his temperature? Real adult brandy to soothe irritation from his vent and feeding tubes? An adult vibrator to help clear the phlegm out of his lungs? Answer at the bottom. According to the nurses, he cried for the first time yesterday! As always, there is an interesting story behind it though. He usually stools frequently in small amounts. Yesterday, he let a big one go. It was so big that his diaper couldn’t handle it. He was lying in his own filth which of course is a stimulus. As a result he starts flailing his hands and before long there was mess on part of his face. The nurse finds him in this condition and has to give him the most thorough sponge bath he’s ever had. He’s never been that wet before and that made him cry! You can understand how I considered this unacceptable. We discussed the matter with the nurses and came up with an appropriate solution in the future. There will be a disposable camera kept at his bedside so that the nurses can take a picture next time before he gets cleaned off. What can I say – I’m a problem solver.
He is becoming more mature as time goes on. He is ready to start wearing a hat – his first clothing! Also the nurses said if we chose, once I get over my cold, we can sleep with one of his blankets (no dad, not that way), and bring it in so that he can have our scent. We can also read to him anytime, and bring in some soft music which they would be willing to play for him in the isolette for short intervals. Once I’m better, we can even touch him more. Of course I still haven’t gotten the chance to even hold him yet. We will be able to do kangaroo care by the end of next week though! Your homework assignment is to look for the term ‘kangaroo care’ and ‘preemies’ if you don’t know what I am talking about. Lying next to my son’s bed is a full size (but rather mundane looking) vibrator wrapped in a latex glove. When you and I have chest congestion we can clear our throat or cough to loosen up the phlegm. I don’t know if he doesn’t know how, or doesn’t have the muscles yet, but he can’t clear this phlegm on his own. Once a day the nurses rub the vibrator along his lungs to clear up congestion. Once he gets a little bigger, they will use a small rubber hammer, but right now it might crack a rib. By October he should be coughing anyway.
He is becoming more mature as time goes on. He is ready to start wearing a hat – his first clothing! Also the nurses said if we chose, once I get over my cold, we can sleep with one of his blankets (no dad, not that way), and bring it in so that he can have our scent. We can also read to him anytime, and bring in some soft music which they would be willing to play for him in the isolette for short intervals. Once I’m better, we can even touch him more. Of course I still haven’t gotten the chance to even hold him yet. We will be able to do kangaroo care by the end of next week though! Your homework assignment is to look for the term ‘kangaroo care’ and ‘preemies’ if you don’t know what I am talking about. Lying next to my son’s bed is a full size (but rather mundane looking) vibrator wrapped in a latex glove. When you and I have chest congestion we can clear our throat or cough to loosen up the phlegm. I don’t know if he doesn’t know how, or doesn’t have the muscles yet, but he can’t clear this phlegm on his own. Once a day the nurses rub the vibrator along his lungs to clear up congestion. Once he gets a little bigger, they will use a small rubber hammer, but right now it might crack a rib. By October he should be coughing anyway.
Wednesday, August 15, 2007
Wireless Technology
I have a cold and didn’t get to see Jordan yesterday for only the 2nd day in his life. That means that everything I’m about to tell is secondhand info. I won’t see him today either to be on the safe side, but I am going to see him on Thursday for sure. Anyway, he is totally off of the I.V.! Last night they upped his feedings which meant they could take him off of the fat in a bag that they’ve been pumping into his system. He is still being fed by tube, and he has a bunch of sensors taped to his body, but for the moment he is under no medical treatment. He’s getting pretty good at sleeping and eating too. He gained a full ounce yesterday. He won’t do that everyday, or even half of the time, but he’s gaining weight at a pretty good clip right now. He’s also fussing with the nurse about what position to sleep in. He sleeps best on his belly, but he definitely prefers his side. He actually started to try to turn himself onto the side last night, even though he didn’t come close to succeeding. The nurse got the hint and put him on his side, until he desatted 5 minutes later and she had to put him back.
If anyone has seen videos or pictures of Jordan, then you probably have seen pictures of his little plastic tent. They used it to help keep him warm and shelter him from a bunch of germs in the air. However, he is now in an isolette. That’s one of those small plastic things were you can stick your hands through the side. The nurses and parents can take him out, but not anyone else. Anyway, it’s a step up from where he was. Overall it was another good day. He will still receive many more injections while in the NICU and will probably have another IV at some point, but for today he is totally cordless. I can’t wait to see him again.
If anyone has seen videos or pictures of Jordan, then you probably have seen pictures of his little plastic tent. They used it to help keep him warm and shelter him from a bunch of germs in the air. However, he is now in an isolette. That’s one of those small plastic things were you can stick your hands through the side. The nurses and parents can take him out, but not anyone else. Anyway, it’s a step up from where he was. Overall it was another good day. He will still receive many more injections while in the NICU and will probably have another IV at some point, but for today he is totally cordless. I can’t wait to see him again.
Sunday, August 12, 2007
Baby 217
Jordan has had a very good weekend. He is now 2 inches longer than the 11 inches at birth. He has also gained over 5% of his body weight since Friday. Of course he is measured in grams, so it only translates to 1lb 9oz. However he is tolerating his feedings well, and it still sleeping. He is working on opening his eyes a little more, and it is positively the most adorable thing. He's so small that he actually has to exert his eyelid muscles to open them. He is getting better, but is not good at it yet. We don't need him to wake up yet, so we'll keep you updated.
I have spent a lot of time this month talking about how good Jordan is doing, but something happened today that brought us back down to earth. The night Jordan was born, the doctors made it clear that babies born that early don't usually live. Logically I've always known that there have been babies brought into the NICU over the last month that haven't made it. Just like when you drive to work and hear about a fatal accident 10 miles ahead - you feel bad, but it's distant and doesn't really affect you. When we go to the NICU and see an empty bed that wasn't empty the day before, we assume that the was moved to another part of the NICU or sent home. Last Thursday when we got there, they were admitting a large (over 5 pound) baby in the bay next to ours. I'd seen the mother a few times, but never really said anything other than hello. Today, when I got there I glanced over and saw the baby. However, the baby wasn't hooked up to an IV, rare for only 3 days old. Also, the vital sign monitor was off. I knew I was looking at the smallest corpse I'd ever seen. It was lying less than 10 feet away fom my son. I don't know why, or when, or how it died, and the nurses will ever tell me if I ask. The baby passed shortly before we arrived, an the nurses took him away shortly afterward. All the mama Ali and I know is that as long as our son is in the NICU, we need to appreciate every day we have with him. This was the first time we cried in weeks. Reading the first part of this entry, you might think just another day of sleeping and eating. It was, but I know of at least one person in Jacksonville tonight who would give everything she had for just one more night of that. That baby was in bay 217 of the NICU. No matter what happens from here on, I will remember the baby in bay 217. Please leave comments concerning the baby in 217 (or 216 for that matter).
I have spent a lot of time this month talking about how good Jordan is doing, but something happened today that brought us back down to earth. The night Jordan was born, the doctors made it clear that babies born that early don't usually live. Logically I've always known that there have been babies brought into the NICU over the last month that haven't made it. Just like when you drive to work and hear about a fatal accident 10 miles ahead - you feel bad, but it's distant and doesn't really affect you. When we go to the NICU and see an empty bed that wasn't empty the day before, we assume that the was moved to another part of the NICU or sent home. Last Thursday when we got there, they were admitting a large (over 5 pound) baby in the bay next to ours. I'd seen the mother a few times, but never really said anything other than hello. Today, when I got there I glanced over and saw the baby. However, the baby wasn't hooked up to an IV, rare for only 3 days old. Also, the vital sign monitor was off. I knew I was looking at the smallest corpse I'd ever seen. It was lying less than 10 feet away fom my son. I don't know why, or when, or how it died, and the nurses will ever tell me if I ask. The baby passed shortly before we arrived, an the nurses took him away shortly afterward. All the mama Ali and I know is that as long as our son is in the NICU, we need to appreciate every day we have with him. This was the first time we cried in weeks. Reading the first part of this entry, you might think just another day of sleeping and eating. It was, but I know of at least one person in Jacksonville tonight who would give everything she had for just one more night of that. That baby was in bay 217 of the NICU. No matter what happens from here on, I will remember the baby in bay 217. Please leave comments concerning the baby in 217 (or 216 for that matter).
8/9 One month old, one IV left...
He's off of the ventilator. One month to the day after he was born, he's off the vent. He's breathing with the help of a special hose that keeps a little stream of oxygen blowing into his nose. If you read any of the other parents, it's a lot like CPAP, but doesn't blow quite as hard. His lungs are working better than I could have possibly hoped for. In fact, he is doing so well lately that just about everything is working as good as could be hoped for. He is tolerating the feedings very well. So well that he is gaining about 1 to 2 percent of his body weight everyday. Of course, we're only talking about grams right now, but for those who aren't nicu parents he is 1 pound 9 ounces.
To celebrate being off of the vent, the mama Ali got to hold her son for the first time! He was wrapped up just like a big baby, but he was so very small. I will never forget seeing the moter holding her baby for the first time. It actually made me cry out of happiness for once. Speaking of crying, he is working on that too. The vent went right past his windpipe blocking his voice. Now, there is nothing blocking him from crying. His throat is still a little bruised from being on the vent for a month, so he can only make a little chirping sound, but that should totally heal by the end of next week. He isn't going to cry much anyway because humans tend to be awake when they cry and that boy sleeps all day. Literally, he doesn't wake up until someone handles him, which he doesn't like the stimulus. I'm not complaining though. All I want him to do is sleep and eat, and he's really good at it.
To celebrate being off of the vent, the mama Ali got to hold her son for the first time! He was wrapped up just like a big baby, but he was so very small. I will never forget seeing the moter holding her baby for the first time. It actually made me cry out of happiness for once. Speaking of crying, he is working on that too. The vent went right past his windpipe blocking his voice. Now, there is nothing blocking him from crying. His throat is still a little bruised from being on the vent for a month, so he can only make a little chirping sound, but that should totally heal by the end of next week. He isn't going to cry much anyway because humans tend to be awake when they cry and that boy sleeps all day. Literally, he doesn't wake up until someone handles him, which he doesn't like the stimulus. I'm not complaining though. All I want him to do is sleep and eat, and he's really good at it.
Wednesday, August 8, 2007
New Links
I have added a few links to other nicu babies to the left side of the page. I’m no lawyer, just someone who has spent a lot of time blogging preemies in the last month. If I have put a link to your blog on here, and you don’t like it, just ask me to remove the link. This isn’t to say that what has happened to these babies will or won’t happen to Jordan. This is just stuff that has happened to other parents in the nicu as they have seen it.
August 8, 2007
Jordan is back on his feedings now. Of course the term feedings is relative. They use a syringe to put the milk into a tube that goes into the stomach (he is about a month away from learning how to swallow). The syringe goes constantly at about the rate of an IV. However, it is milk and they are giving it to him.
Last week, I said that we expected to find out the results of the heart test by now. It was pretty much as I expected. The hole is still there, but the medicine shrunk it a lot. He is having no symptoms and no problems resulting from the hole. Eventually the hole must close on its own, or with the doctor’s help. Right now though, he is doing fine, so the doctor’s aren’t going to do anything until he gets bigger. Let me say this again. The doctors are going to leave his heart alone unless it stops working so well. Then they will try and fix it. And I agree with them. He spends all day sleeping and eating, and I don’t see any reason to change that for several weeks.
Actually, he doesn’t just sleep and eat. Last night he learned a new trick. He pulled out his ventilator tube – twice. Of course, this led to a couple of desats. He can’t breathe without the tube, but the only way to get him to stop is to strap down his arms. He moves a lot when he is awake, but he calms down a lot when he sleeps in a comfortable position. Right now, he is pretty stable and is doing well. There is no change expected in treatment other than feeding him more. His only job right now is to eat and sleep, which will help him grow. In the meantime, I’ll keep updating, but everything is pretty good.
Last week, I said that we expected to find out the results of the heart test by now. It was pretty much as I expected. The hole is still there, but the medicine shrunk it a lot. He is having no symptoms and no problems resulting from the hole. Eventually the hole must close on its own, or with the doctor’s help. Right now though, he is doing fine, so the doctor’s aren’t going to do anything until he gets bigger. Let me say this again. The doctors are going to leave his heart alone unless it stops working so well. Then they will try and fix it. And I agree with them. He spends all day sleeping and eating, and I don’t see any reason to change that for several weeks.
Actually, he doesn’t just sleep and eat. Last night he learned a new trick. He pulled out his ventilator tube – twice. Of course, this led to a couple of desats. He can’t breathe without the tube, but the only way to get him to stop is to strap down his arms. He moves a lot when he is awake, but he calms down a lot when he sleeps in a comfortable position. Right now, he is pretty stable and is doing well. There is no change expected in treatment other than feeding him more. His only job right now is to eat and sleep, which will help him grow. In the meantime, I’ll keep updating, but everything is pretty good.
Monday, August 6, 2007
August 5th, 2007
When they try things out in the NICU, it is literally trial and error. Take the feedings for instance. You feed the baby. He’s OK, you feed him more. Still OK, feed him a little more. Keep feeding him more until his body says stop. Jordan’s body said stop Saturday night. He’s not sick or anything, but his body made it clear that we reached his limit. They stopped feeding him for a day to give his body a rest, and will start again on Monday at the lower setting. They also are fiddling with some of the minerals in his blood. Do you know you blood sugar levels? What about your potassium, or you sodium? I don’t know mine, but it’s pretty amazing how a change in calcium, or potassium, or iron in the blood can totally change my mood for several hours. There’s nothing worth worrying about, but it goes to show how much even the little things matter when it’s your kid. Jordan’s blood sugar isn’t perfect, it ruins my afternoon. I haven’t seen a doctor since 2005, and thanks to Jordan I can now see one for free.
Today’s vocabulary word is Desat (DEE-sat). Desat is when a preemie forgets to do stuff. We all forget stuff on occasion. When a preemie desats, he forgets to breathe or pump his heart for a few seconds. It’s totally expected, and somewhat expected by the nurses. It’s totally normal and does happen, but the amazing thing is that when he stops breathing, or his heart stops, the exact same thing happens to me. Anyway, nothing major this weekend, so I’ll close with good news. In the first 28 days of life, he has gained 4 ounces, and grown over an inch. He is now a pound and a half and over 12 and a half inches.
Today’s vocabulary word is Desat (DEE-sat). Desat is when a preemie forgets to do stuff. We all forget stuff on occasion. When a preemie desats, he forgets to breathe or pump his heart for a few seconds. It’s totally expected, and somewhat expected by the nurses. It’s totally normal and does happen, but the amazing thing is that when he stops breathing, or his heart stops, the exact same thing happens to me. Anyway, nothing major this weekend, so I’ll close with good news. In the first 28 days of life, he has gained 4 ounces, and grown over an inch. He is now a pound and a half and over 12 and a half inches.
Thursday, August 2, 2007
August 2, 2007
I visted Jordan yesterday after not visiting on the 31st. I heard from the nurses that he was off of the blood pressure medication and holding stable on his own. The last time I saw him, he had 4 I.V.s in him - one in each arm and each leg. I was hoping that they would be able to take one of them out because he was no longer on the dopamine. When I saw him yesterday he was down to one I.V! The doctor mentioned last week that they would attempt to feed him once he stabilized his blood pressure, but I wasn’t expecting anything to happen yesterday until they resolved his heart PDA (more on that later). He had one I.V. for his lipids (fats) and he was being fed with a tube directly into the stomach. He’s so young that they aren’t really feeding him. They are giving him a couple of CCs over a couple of hours, and they are giving it to him about the rate of an I.V. drip, but it’s going into his stomach. When the babies are this young, the digestive system isn’t on yet. They turn it on by putting a very small amount of food in and seeing how he tolerates it. Best case means he processes the food normally, and he works his way up to more and more food. Worst case, his stomach does nothing, the milk starts to ferment and they have to suck out the contents before he gets an infection. Of course we won’t know until later today how he tolerates it.
Right now he just has the one I.V. and a ventilator to help him. Everything else is just sensors. He was looking like a little baby instead of a sick hospital patient. They even turned him on his stomach! He got to curl up into the fetal position for the first time since the day he was born. This is exactly why I say only look 3 days into the future. After seeing where he has been, I can truly appreciate where he is. I got to turn my son over for the first time, when I remember days I couldn’t even touch him. He is cuurently off of the sugar water, a week after his doctor thought he would die. A week ago he was using all of his calories just hanging on. Now, for at least a few days, he can use the calories to grow. There is no looking beyond this weekend. I just want to spend as much time as possible to appreciate what he has done so far. I’m not worried about bottles, or coming home, or any of that crap. I’m just happy that for the first time in 22 days, I got to see my son’s back.
I was wrong about my prediction for the PDA. I predicted they would have done the damn test by now and not told us the results yet. It turns out they haven’t done the test yet! They are doing the test today, and assuming that there is nothing major, we probably won’t get the results back until next week. Beleive it or not, that is actually what I’m hoping for. The only way we get the results back quickly is if the doctor wants to close the hole manually. He isn’t having any complications or symptoms right now, so maybe the doctor decides that it has improved enough so that we can leave it alone until he gets a little bigger. Again, no reason to look beyond getting the results back. That’s Monday at the latest. Naturally, I’ll keep you updated.
Right now he just has the one I.V. and a ventilator to help him. Everything else is just sensors. He was looking like a little baby instead of a sick hospital patient. They even turned him on his stomach! He got to curl up into the fetal position for the first time since the day he was born. This is exactly why I say only look 3 days into the future. After seeing where he has been, I can truly appreciate where he is. I got to turn my son over for the first time, when I remember days I couldn’t even touch him. He is cuurently off of the sugar water, a week after his doctor thought he would die. A week ago he was using all of his calories just hanging on. Now, for at least a few days, he can use the calories to grow. There is no looking beyond this weekend. I just want to spend as much time as possible to appreciate what he has done so far. I’m not worried about bottles, or coming home, or any of that crap. I’m just happy that for the first time in 22 days, I got to see my son’s back.
I was wrong about my prediction for the PDA. I predicted they would have done the damn test by now and not told us the results yet. It turns out they haven’t done the test yet! They are doing the test today, and assuming that there is nothing major, we probably won’t get the results back until next week. Beleive it or not, that is actually what I’m hoping for. The only way we get the results back quickly is if the doctor wants to close the hole manually. He isn’t having any complications or symptoms right now, so maybe the doctor decides that it has improved enough so that we can leave it alone until he gets a little bigger. Again, no reason to look beyond getting the results back. That’s Monday at the latest. Naturally, I’ll keep you updated.
July 30, 2007
I guess when taking things one day at a time, you guys will fall behind if I only post twice a week. Since the last time, his lung problem totally resolved itself, although we are sure it was immaturity. The doctor said on Thursday tht his heart was virtually closed and there never was an infection in the blood culture. He exhibited the signs of pneumonia, but technically he never had it or any other blood borne infection. By Saturday, he was on minimal levels of the blood pressure meds, and the doctor said that if they could get him off of the meds, they would start feeding him. That was the best news any doctor had ever given us about Jordern, so naturally his blood pressure fell and they had to go up on his meds. I have actually started to look forward to doctors giving us bad news, because they haven’t been right yet. The doctor gave us some bad news yesterday though, which I guess is a good thing.
When we are fetuses, we have a hole in our heart that allows blood to skip the lungs. Blood doesn’t need to go to the lungs in the womb, so it goes through the hole. It closes naturally within a day or two of a full term birth. Jordan didn’t have a full term birth, so his hole stayed open. The doctors gave him medicine that closed the hole over 90% last week. We heard yesterday that it was opening up again. They are giving him another round of meds, but it takes one dose a day for 3 days. That means we won’t know until Wednesday whether or not the medicine works (I keep telling you, never look more than 3 days into the future). If the hole is still there, an operation MAY be in order. It is a relatively simple procedure that involves clamping an artery near the heart. Ordinarily it’s a pretty normal procedure, but my son doesn’t do anything normally. He is so small, that it is risky. He would survive the procedure, but he would have a lot of medicine to process for such a small body. Also, he is still on blood pressure meds. Not really a problem, but they won’t feed him until he’s totally off of them. Closing the PDA may solve it, or it might not. The only thing to ssolve the blood pressure is getting bigger, which he has to do on sugar water and fat in a bag.
The schedule is that he finishes the heart medicine on Tuesday evening. They will schedule an echocardiogram (echo) for Wednesday morning. The cardiology dept will take their sweet time getting to the NICU, which means the echo won’t occur until the end of the day Wednesday, or Thursday morning if I get all uppity and start complaining. Assuming the thing occurs after the end of work Wednesday, the technician will confirm the heart is still beating, but will leave diagnosis to the neonatologist on Thursday morning. The neonatologist will conduct rounds beginning at 10am, but not get to Jordan because god forbid anyone gives special attention to the sick babies. The neonatologist will putz around until lunchtime when she will look at the echo. If it even exists a little bit, she’ll have to consult with the cardiologist, who works in a different wing of the hospital. That means Flossie and I won’t get a firm result back until Friday as to whether or not there is a hole in the heart. Then of course if there is a procedure to be done, it won’t happen until Monday (Jordan’s fault for not needing surgery during the week). Of course, I hope there is no procedure, but the Ross (see James and Richard) in me truly believes that I won’t know until Friday at the earliest.
When we are fetuses, we have a hole in our heart that allows blood to skip the lungs. Blood doesn’t need to go to the lungs in the womb, so it goes through the hole. It closes naturally within a day or two of a full term birth. Jordan didn’t have a full term birth, so his hole stayed open. The doctors gave him medicine that closed the hole over 90% last week. We heard yesterday that it was opening up again. They are giving him another round of meds, but it takes one dose a day for 3 days. That means we won’t know until Wednesday whether or not the medicine works (I keep telling you, never look more than 3 days into the future). If the hole is still there, an operation MAY be in order. It is a relatively simple procedure that involves clamping an artery near the heart. Ordinarily it’s a pretty normal procedure, but my son doesn’t do anything normally. He is so small, that it is risky. He would survive the procedure, but he would have a lot of medicine to process for such a small body. Also, he is still on blood pressure meds. Not really a problem, but they won’t feed him until he’s totally off of them. Closing the PDA may solve it, or it might not. The only thing to ssolve the blood pressure is getting bigger, which he has to do on sugar water and fat in a bag.
The schedule is that he finishes the heart medicine on Tuesday evening. They will schedule an echocardiogram (echo) for Wednesday morning. The cardiology dept will take their sweet time getting to the NICU, which means the echo won’t occur until the end of the day Wednesday, or Thursday morning if I get all uppity and start complaining. Assuming the thing occurs after the end of work Wednesday, the technician will confirm the heart is still beating, but will leave diagnosis to the neonatologist on Thursday morning. The neonatologist will conduct rounds beginning at 10am, but not get to Jordan because god forbid anyone gives special attention to the sick babies. The neonatologist will putz around until lunchtime when she will look at the echo. If it even exists a little bit, she’ll have to consult with the cardiologist, who works in a different wing of the hospital. That means Flossie and I won’t get a firm result back until Friday as to whether or not there is a hole in the heart. Then of course if there is a procedure to be done, it won’t happen until Monday (Jordan’s fault for not needing surgery during the week). Of course, I hope there is no procedure, but the Ross (see James and Richard) in me truly believes that I won’t know until Friday at the earliest.
July 26, 2007
Imagine having the emotions of a 3 year old. When you are happy, you are the happiest you have ever been. The world is a great place, and a visit to the pool is the best day of your life. When your parents yell at you, it’s the end of the world. Your parents don’t love you, no one loves you, and the only choice is to run away and join the circus. Multiply those feelings by a hundred and you know what it is like to be a NICU parent. Tuesday was the absolute worst day of my life. Wednesday was one of the best. Jordan had fluid in his lungs on Monday, which could have been several things. It could have been pneumonia, it could have been heart trouble (a.k.a. a PDA), it could have been immaturity. The doctors take a blood sample to see if there is an infection, but it takes 3 days to get a result. They start him on antibiotics to be safe. His oxygen saturation is low, which essentally means that his lungs aren’t giving his body enough O2. Imagine being out of breath like you just sprinted really hard. Now imagine feeling like that for a few hours, not just a few minutes. Eventually, we go home to get ready for work the next day.
The next day the doctor calls at 2pm and says that we should come to the hospital and expect to spend the night. Doctors never call to tell you to visit a healthy baby. I left work early, we dropped the dogs off at the Seaton’s house (thanks guys), and drive up to Jax. I drove 75 minutes not knowing whether or not my son would make it through the night. The drive felt like it lasted all day long. We got to the hospital and speak to a doctor. He says that is on maximum blood pressure meds, maximum oxygen, and maximum ventialtor. We are told that he was stable, but maxed out. If he got any worse, there was nothing more that could be done to help him. It was at that moment I learned the true definition of fear. I spent the next hour sitting on the left side of the bed and confident that death was sitting on the right. Eventually, the social worker came and asked if we wanted a room at the Ronald McDonald House (the RMH for short). Jordan was still stable, but no improvement either. The mama Ali was adamant that she wouldn’t leave him all night and wouldn’t need a room. However, it cost only 10 bucks, was 2 blocks away, and I knew I would probably use it. I registered there, got a bite to eat (my first since 7 am) and headed back to the hospital. We sat by the baby until they kicked us out for an hour for shift change. We were both in the middle of Harry Potter and knew we’d be up all night so we got a 2nd copy. There is no such thing as a budget when your kid is sick. When we got back we sat by him through the rest of the evening. That night, I grew as a person. I remembered back when I used to worry about stupid stuff. I used to care how the Mets did – I barely remembered there was a game. I used to worry about my car – who gives a damn when the last oil change was? I used to worry about bills and money – I never want to meet the bastard that tells the doctor to save his kid’s life, but don’t spend too much money while doing it. I used to think about politics – that night being pro life meant something entirely different than it used to. However, he slowly started improving. The oxygen in his blood kept going up and they slowly turned the ventialtor down. When you and I breathe room air, about 21% is oxygen. At the start of the night he was on 100%, but by midnight he was at 80% - not good, but better.
It was by this time I couldn’t really stay awake, so I went back to RMH. Those guys were great. You know how you all say if there’s anything we need, to ask? At RMH, they gave us a place to stay, free food, flexible hours, and they were 2 blocks from the NICU. It’s not much, but that night, that’s all we needed. I napped for 3 hours and went back to my family. Jordan and the mama Ali were both where I left them. We stayed togther until the next shift change at 6:30 am. Jordan was on 40% oxygen, his blood pressure improved, and the ventilator wasn’t on the highest setting any more. I took the mama Ali back to RMH and we took a 3 hour nap. We were back at the hospital before lunch where we spoke briefly with the doctor (I felt like rubbing it in her face that he was still fighting, but I didn’t). The mama Ali was a real trooper and an inspiration during the entire day. By late afternoon Wednesday, he was down to breathing 40% oxygen, he was on reduced doses of blood pressure meds, and all of his other stats were perfectly normal. I even got to change the diaper and take the temperature. Indeed, Wednesday was one of the best days of my life, when considered in the context of Tuesday.
The next day the doctor calls at 2pm and says that we should come to the hospital and expect to spend the night. Doctors never call to tell you to visit a healthy baby. I left work early, we dropped the dogs off at the Seaton’s house (thanks guys), and drive up to Jax. I drove 75 minutes not knowing whether or not my son would make it through the night. The drive felt like it lasted all day long. We got to the hospital and speak to a doctor. He says that is on maximum blood pressure meds, maximum oxygen, and maximum ventialtor. We are told that he was stable, but maxed out. If he got any worse, there was nothing more that could be done to help him. It was at that moment I learned the true definition of fear. I spent the next hour sitting on the left side of the bed and confident that death was sitting on the right. Eventually, the social worker came and asked if we wanted a room at the Ronald McDonald House (the RMH for short). Jordan was still stable, but no improvement either. The mama Ali was adamant that she wouldn’t leave him all night and wouldn’t need a room. However, it cost only 10 bucks, was 2 blocks away, and I knew I would probably use it. I registered there, got a bite to eat (my first since 7 am) and headed back to the hospital. We sat by the baby until they kicked us out for an hour for shift change. We were both in the middle of Harry Potter and knew we’d be up all night so we got a 2nd copy. There is no such thing as a budget when your kid is sick. When we got back we sat by him through the rest of the evening. That night, I grew as a person. I remembered back when I used to worry about stupid stuff. I used to care how the Mets did – I barely remembered there was a game. I used to worry about my car – who gives a damn when the last oil change was? I used to worry about bills and money – I never want to meet the bastard that tells the doctor to save his kid’s life, but don’t spend too much money while doing it. I used to think about politics – that night being pro life meant something entirely different than it used to. However, he slowly started improving. The oxygen in his blood kept going up and they slowly turned the ventialtor down. When you and I breathe room air, about 21% is oxygen. At the start of the night he was on 100%, but by midnight he was at 80% - not good, but better.
It was by this time I couldn’t really stay awake, so I went back to RMH. Those guys were great. You know how you all say if there’s anything we need, to ask? At RMH, they gave us a place to stay, free food, flexible hours, and they were 2 blocks from the NICU. It’s not much, but that night, that’s all we needed. I napped for 3 hours and went back to my family. Jordan and the mama Ali were both where I left them. We stayed togther until the next shift change at 6:30 am. Jordan was on 40% oxygen, his blood pressure improved, and the ventilator wasn’t on the highest setting any more. I took the mama Ali back to RMH and we took a 3 hour nap. We were back at the hospital before lunch where we spoke briefly with the doctor (I felt like rubbing it in her face that he was still fighting, but I didn’t). The mama Ali was a real trooper and an inspiration during the entire day. By late afternoon Wednesday, he was down to breathing 40% oxygen, he was on reduced doses of blood pressure meds, and all of his other stats were perfectly normal. I even got to change the diaper and take the temperature. Indeed, Wednesday was one of the best days of my life, when considered in the context of Tuesday.
July 23,2007
The mama Ali and I have been discussing doing this diary for a few days and decided to get started. I won’t go back to the beginning. Hell, on the roller coaster I can’t really remember the beginning. I do want to start with a couple of ground rules. First of all, stop telling us it will be OK. If you are reading this, you are family or friend. We know you love us, care for us, pray for us, and hope for the best. That being said, when you experience what we have, you know there’s nothing to make us feel better. Last night, Jordan had bad blood pressure, and that really bothered The mama Ali. We got something to eat, got reassurance from the family, I comforted her as best as I could. She did not feel better until Jordan improved.
Second of all, when we say that you don’t know what it’s like, don’t take it personally. Being a parent requires you going through many stages, and you never know the experience until you’ve had it. You can’t appreciate the difficulty of toilet training until you experience it. You can’t appreciate how hard it is when your teenager dates someone bad for them until it happens. The terrible twos are funny for everyone else in the family, but hell for you. My son is 3 weeks old and I’ve never seen him with fewer than 3 I.V.’s in him. You can’t understand the heartbreak of seeing an I.V. in your son’s head until you experience it – and I truly truly hope that none of you ever do.
Third of all, we don’t know the future, and are afraid to ask. We don’t worry about things like coming home, or development or any of that stuff. We take it one day at a time, because things change day to day. He can be on the verge of death now, and better than ever in 36 hours (I’ve seen it happen). The doctors have made it clear since Flossie was admitted that his projections are poor. When the doctor’s speak to us, they discuss one of two things. They discuss the future and how bad they expect him to do, or they talk about the last few days and how well he has done. Don’t ask when he’s getting out, because it won’t happen for months. Don’t ask what the doctors expect, because they didn’t expect him to live this long. It takes 3 days to confirm infections in blood, worry about anything longer than that and you set yourself up for heartbreak.
Fourth, and most importantly, we know that if you are reading this, that you do care, and want the best outcome. We appreciate your support and know that you all wish you could help. If there is anything that we need, we will ask. If you really must act, then make a donation to your local Ronald McDonald House. We’ll worry about clothes and toys and stuff for Jordan when the doctors start giving us good news.
Second of all, when we say that you don’t know what it’s like, don’t take it personally. Being a parent requires you going through many stages, and you never know the experience until you’ve had it. You can’t appreciate the difficulty of toilet training until you experience it. You can’t appreciate how hard it is when your teenager dates someone bad for them until it happens. The terrible twos are funny for everyone else in the family, but hell for you. My son is 3 weeks old and I’ve never seen him with fewer than 3 I.V.’s in him. You can’t understand the heartbreak of seeing an I.V. in your son’s head until you experience it – and I truly truly hope that none of you ever do.
Third of all, we don’t know the future, and are afraid to ask. We don’t worry about things like coming home, or development or any of that stuff. We take it one day at a time, because things change day to day. He can be on the verge of death now, and better than ever in 36 hours (I’ve seen it happen). The doctors have made it clear since Flossie was admitted that his projections are poor. When the doctor’s speak to us, they discuss one of two things. They discuss the future and how bad they expect him to do, or they talk about the last few days and how well he has done. Don’t ask when he’s getting out, because it won’t happen for months. Don’t ask what the doctors expect, because they didn’t expect him to live this long. It takes 3 days to confirm infections in blood, worry about anything longer than that and you set yourself up for heartbreak.
Fourth, and most importantly, we know that if you are reading this, that you do care, and want the best outcome. We appreciate your support and know that you all wish you could help. If there is anything that we need, we will ask. If you really must act, then make a donation to your local Ronald McDonald House. We’ll worry about clothes and toys and stuff for Jordan when the doctors start giving us good news.
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