Baby On Your Six

About 3 hours ago, Aaron passed away. After speaking with his doctors earlier in the last few weeks, we decided that if at any point they were no longer supporting Aaron's life, but instead preventing him from dying, that we didn't want him to suffer any longer. We reached that point this morning. Aaron had been struggling for life from Day One, and after surgery, and several weeks of fighting, Aaron ran out of strength. He fought hard, but the strain of surgery just proved to be too much for him. I'm sure I'll feel up to posting more information later. I just don't seem to have any energy left in me for relating this at the moment. But I did feel it was important to share this information with all of you who have been keeping tabs on us. Thank you for your concern, your prayers, and your well-wishes during this difficult time. We love you. P.S.: I'd like to leave you with the following lyrics that popped into my head while we held Aaron as he passed away. They

* (asterisk denotes super-terrific happy news, but not the kind that involves massive amounts of urine) Everything is "as-is." I.E. as it has been. He's still not peeing, still high on the vent settings, and still in a very precarious situation. However...thanks to his tremendous nurse today, both DrummerWife and I were able to hold our little boy today. She took him out of the isolette completely in his bedding and set him into my lap. For 45 minutes, Aaron laid in my arms, and I talked to him, and cradled him, and cried over him. I've never been happier in my life than in the moments that Aaron was that close to me. He's beautiful, he's precious, and he's my boy. And no matter what happens, no one or no thing can ever take away the memories that I have of holding my son. I'm going to attach a number of photographs. Since my flickr account is completely maxed out for the month (until Thursday) I'm just uploading them here. If you want to download

...and Aaron is still fighting. He is still very high on the ventilator, and barely oxygenating - but he's hanging on. We're all exhausted, but we're going back to the hospital early this morning. As much as it hurts, we need to be by his bedside. We continue to pray for a miracle - that Aaron be relieved of his respiratory distress and that he relieves his adema by urinating. Every time I pray, I beg God for a few more hours with my son. Thus far, He has obliged. Please pray that he continues to oblige. Because despite the struggles Aaron has endured recently, there is life inside his tiny body. He continues to kick. To wiggle his arms. He has life. Now we must pray that he gets a chance to experience it.

It's about 10:30pm and this is the first time we have left the hospital since noon on Sunday. Aaron's having a rough time right now. I am tired but will quickly try to give a general update. First, we still need pee and lots of it. He still is just not peeing. Second, he is having some respiratory issues. Lets go back to yesterday. We got there Sunday around noon - the doctor was there and went over Aaron system by system. When we got there his oxygen was at 95% when he was feeling good he was down closer to 21% (which is what we all breathe - 21% is room oxygen). So he was at 95% oxygen, he still was not peeing, he was swollen. Meanwhile his lab work was looking pretty good, and they were giving him fluids to try to fix the peeing issue. They looked at his kidneys which look ok, checked his bladder for urine and there was none. His 3 issues were - no pee, heavy oxygen support and the fact that his incision from the surgery had opened up due to the swelling. The doctor said she

Aaron is still not processing any of this fluid he's got trapped in his body. His dopemine has been reduced, in an effort to allow for more free flow of blood to the veins in his kidneys and bladder. The hope is that this will stimulate some urine production. Thus far - no dice. Maybe tomorrow will prove to be a better, more urine-productive day. We can only hope. It's gotta be better than today was. DrummerWife and I both had to come face to face with some very grave realities regarding Aaron's prospects if he doesn't start recovering the way the doctors expected him to. He *NEEDS* to urinate. Has to, if he wants to stick around for much longer. =/

Dear Sweet Aaron, 4 weeks and we have been through more than I thought possible. You are so sweet - even when you are so puffy. This week the name of the game was pee. You weren't peeing then you were, then you weren't and now you are a tiny little bit. We need more, lots more. Trust your mommy, you will feel MUCH better if you pee. We keep trying to tell you that. Your nurses take such good care of you and they want you to pee to. There are so many people that care about you, and pray for you - some of them Mommy and Daddy don't even know. We get cards nearly every single day - it is amazing and we are so thankful. You seem to be following a lot of things that another baby girl in the NICU did. I talk to her mommy a lot and she makes me feel a little better, but I keep telling you that you don't need to copy her. Last night I was talking to Dr. Quayan before we left. He said that you have had mommy and daddy on a roller coaster ride. I told him that we were told to exp

Aaron had about 3 cc's of pee over night which is not great compared to the level of fluid he has been getting. So we need lots of prayers for lots of pee. The doctor seems discouraged - but we know that Aaron has surprised everyone before. Don't misunderstand me - he's ok - they are just doing a lot to make him ok right now. We know last Wednesday and Thursday all the prayers worked and we want to see that again. We appreciate it!

So...Aaron's back in another holding pattern. But this one ain't such a pretty pattern to behold. He's not urinating. Which means he's retaining water and getting puffier instead of depuffifying. The reason he's not urinating is most likely because his kidneys aren't receiving enough blood to work properly. His kidney's aren't getting enough blood because he's so puffy. So, he can't lose the puffiness until he urinates. He can't urinate until he loses some puffiness. Catch-22. Now he has urinated tonight. 2cc's. And that's a good start. But something has to give. He needs to urinate like 10-12cc's at a time. Also...his incision from last week's surgery opened up. The doctors aren't terribly concerned by that, as it will close naturally, and they'll do what they can to correct any resultant scarring. So...pray for pee, folks. Lots of it. Do a rain dance, if that's your thing. Whatever. Just get this kid whizzing.

Seems that Aaron's taken another one of those "steps back" that we all love oh so much. The wound from the hernia surgery has opened up on his stomach today, he's still swollen, he's stopped urinating, and his blood pressure is down. A lot, apparently. Here we go again, folks. I'll be heading to the hospital when I get off work at 3:30pm. DrummerWife is already there. ...Prayers, please.

"We're kinda in a holding pattern, right now." Aaron's just still...puffy. And just still...recovering. Nothing really new to report. I wasn't at the hospital yesterday myself (my allergies destroyed me yesterday) but DrummerWife tells me that Aaron is just continuing to de-swell, and recover. Wish I had something more interesting to report to you, but honestly, I'm happy to say that everything is just A-OK right now. As much as that means that there's no real good news to tell you, it also means there's no bad news either. So, we'll call it a good thing.

Apparently last night's phlegm wad gave everyone involved a bit of comic relief. Tonight, his nurse Heather told me that after all the stress Aaron had them under, when they essentially pulled a nickel sized booger out of his lungs they had to chuckle that THIS was what was causing all the problems. (I don't know about you but a nickel sized phlegm wad coming from MY throat would be gross - imagine it from someone his size). She also said the moment it was out Aaron opened one of his eyes, looked around and started kicking his feet as if to say, "What's going on guys - what was THAT !" She said about an hour later after Aaron forced them to put him back onto the regular ventilator (because he was trying to breathe on his own when he was on a ventilator that is supposed to breathe FOR him), he looked at her like, "What did I do?" Of course these are words that Heather put in his mouth, but often Aaron's nurses and I have conversations and the nurses w

I bet not. But Aaron has. And just tonight, not even an hour ago, he coughed up that phlegm wad. Apparently, the doctor claimed that said phlegm wad was "life-threatening" and large, even by full-grown adult standards. Monday's just are not Aaron's day. Thus far, he's been moved from hospital #1 to hospital #2 so he could get surgery, he's had the first broviac line installed, and now he's nearly choked to death on a ball of mucus - all on a Monday. That kid sure sucks at Mondays, doesn't he?

Aaron is still retaining quite a bit of fluid post-op, but he's starting to pass some of that fluid today. In the past 18 hours, Aaron's had diapers full of 10cc's and 12cc's of urine, respectively. That's colossal, considering he was averaging 1 to 3cc's pre-surgery. Here's hoping he keeps passing fluids - that way he'll keep shedding his adema, and return to his real weight and...girth. Then he can hopefully pass some solid waste again, and start taking feedings of milk.

Well it was a pretty good weekend for Aaron. Saturday when we got there he was pretty wide awake. He is very puffy right now because he has a lot of fluid pumping through him. He was not peeing yesterday which was contributing to the puffiness. Today they got him peeing again and they think by tomorrow or so they will start getting LESS puffy. Last night Aaron decided to surprise us - we went for a walk and came back to find the doctor and nurse around his bed. Turns out that his Broviac (also known as a central line) was clogged up. We THOUGHT we were going to be getting ready to leave and it turns out they had to call in the surgeon again - that was at 5:00. We had to stay to meet the surgeon and sign the paperwork. He got there a little after 7:00, they got started closer to 8:00 and had it taken care of around 9:00 - WE had not even eaten dinner then. We have learned now to NEVER make plans (our plan was to leave the hospital and be home to eat dinner - which is why we did not have

Dear Sweet baby boy, We have had quite enough excitement for awhile! Can we slow down here for a little bit? This week you had 1 "procedure" and 2 surgeries. First, at the beginning of the week you had a Broviac (or central line) placed in you. You were going through IV lines and A-lines pretty quickly because your veins are so tiny, so the Broviac was inserted by the surgeon, Dr. Katz, and it should last you for a lot longer. All week the doctors and nurses were watching what they had diagnosed as NEC very closely and Wednesday one of the worst things had happened, you had "Free-air" which meant surgery...NOW!!! Mommy had just gotten to the hospital when daddy called and said he just spoke to the doctor and you would be having surgery right away. I had the shortest conversation ever with Grandma Pam - I told her "Aaron's having surgery today", she said she was on her way and we hung up. Daddy called Grammy Vicki to tell her what was going on she was o

After a long day of sitting at the hospital, hoping for the best, and preparing for the worst, the surgeon came in to talk to us and revealed to us that things went better than anyone could have possibly expected. Aaron never had an infection. What he did have though, was a hernia. He had a loop of intestine trapped beneath another loop, and while it was never "infected," it was trapped and deprived of blood, so it was dead. The surgeon removed the damaged loop, and thankfully, there is plenty more intestine left in there for Aaron. He's recovering peacefully from today's surgery, and was already at 28% oxygen (21% is room air) on the ventilator, and his other stats were all back where they were pre-surgery. He's doing fine. I want to thank everyone for their prayers and well-wishes during this time. I fully believe that Aaron wouldn't have rebounded from yesterday's procedure so quickly, and wouldn't have been as ready for today's if not for those

The surgeon told us yesterday that her best educated guess is that Aaron doesn't have a lot of infected intestine. But that she couldn't be sure until she opened him up. Despite that, he had a lot going for him - he was otherwise perfectly stable, and his blood gases were coming back acid-free (a sign of limited infection). As of this morning, his last blood gas test came back with great results - meaning he was still largely acid-free, and that he had weathered the stress of yesterday's procedure well. These are both good signs. he's acid-free, meaning he probably doesn't have a lot of infected intestine he's still stable, meaning he handled yesterday's procedure and has a good chance of handling today's This is all good news. But it doesn't mean that he's a sure bet to make it through this ordeal unscathed. He still needs all of the prayers that everyone is offering up for him, but he does stand a good chance. And that's all we can ask for

The relatively minor procedure they were doing today (relative only compared to what's next on the table for Aaron) led them to find that he's not doing as well as he seems to be letting everyone else *believe* he's doing. He has quite a bit of infected (re: dead ) intestine. It will be removed tomorrow, and if it's too much dead intestine, there is really very little the doctors can do for Aaron. The surgery is scheduled for 2:00pm tomorrow afternoon. So, if you're so inclined - pray around the 2 o'clock hour - for DrummerWife and myself, for Aaron, and for the doctors, nurses, and surgeons who will be attending to him. Pray that God heals his intestine so that they can save enough of it. Or pray that only a small amount is damaged to begin with. It's scary. I hate to say it, but I haven't had a chance to hold Aaron yet. And if things go badly, I may never get to. I want to cry every time I think about that. I need to hold my son, even if it's only

Aaron's going in for surgery TODAY. He has what the doctor is calling "evidence of free air." What that means is that his infected intestine is leaking air, either because of a rupture, or a slow leak, or something. So...the doctor made a point of stressing that this was a "pretty serious thing." Pray, wish us all luck, and by all means, keep us in your thoughts. I'm on my way to the hospital right now.

All is quiet on the Aaron front. We're pretty much playing a game of wait-and-see right now. That's why this update is going to be so very, very brief - there just isn't much to say right now. He's holding his own, and just cruising along. Gaining weight, and generally looking like the cutest baby in the NICU. Sometime soon, he'll be having surgery, but the surgeon and doctors are all content to just wait until he gains some more weight before sending him under the knife.

...EVERY Monday. It seems that Mondays aren't Aaron's day. Last Monday, he got moved from Hospital #1 to Hospital #2. Today, the doctors had to install a central line - by essentially grafting a IV line right to a vein in his neck. Supposedly, this will help him get fed more calories quicker, as well as keep the doctors from pricking him for any more IVs. The idea is that they'll get him fattened up quicker, and then if they do have to operate, he'll have some weight on him, and hopefully the surgery is a little bit easier on the little fella. Also: got some new pics uploaded to http://www.flickr.com/photos/drummer .

Well, I know it's not exactly how you foresaw your first official Mother's Day as a mom playing out, but hey - it counts. And you're little baby boy will soon know exactly how great of a mom you're going to be for him. Just you wait. Also, I guess this is as good a time and place as any to say "Happy Mother's Day" to DrummerMom and DrummerMother-in-Law, as well. DrummerWife and I have been blessed to have the two of you not only throughout all of this, but throughout our lives, as well. Thank you. (Also, Aaron wanted us to pass along the following message to you both - "Happy Mother's Day, Grandma." He's a thoughtful little fella, isn't he?) As a special Mother's Day treat, I think DrummerWife is going to get to hold little Aaron again today. She's done it twice already, and she's getting to do it again. I was going to hold him for the first time, but I thought I'd just let DrummerWife enjoy her first Mother'

Well Mr. Aaron, we had yet another exciting week. You are such a trooper. Let's look back to the beginning of the week. On Sunday it started to become pretty evident that you were not feeling well. Every blood culture that they did was coming back negative though, so we weren't quite sure what was wrong. On Monday, an xray showed that you had an inflamed loop in your small intestine. Immediately the was a concern- the doctor's started you up on antibiotics and you have been xrayed to keep an eye on things 2-3 times a day since then. On Tuesday, the doctor's thought it would be best to transfer you to Bryn Mawr hospital which is right up the road from Lankenau (and about 15 minutes closer for mommy and daddy to come see you). The doctor and nurses said that you loved your first "car" ride (even if it was in an ambulance). Mommy and Daddy like the NICU and Bryn Mawr better - so I am glad you are there. The nurses keep a nice close eye on you and IF you have to h

The surgeon says that Aaron is more than stable. In fact, with the exception of his x-rays, everything points to Aaron's status actually improving . His vitals are good, his abdomen feels softer, his white blood cell count and platelets are no longer decreasing. He seems to be, in a word, improving. Albeit ever so slightly. I've decided to attach a photo of Aaron's monitor, and to explain what all the numbers mean. The green line at the top is Aaron's heart rate - it's at 169, which is high for you and I, but is perfectly normal and healthy for a 27.5 week old preemie. The yellow wavy line below the heart rate is Aaron's respiratory rate. It's a little high there at 82, but not abnormal. He is on a ventilator right now, so it's fairly controlled. The blue line beneath that is Aaron's blood/oxygen saturation rate. It's currently at 95%, which is EXCELLENT. 100% would be too much for someone his size, and damaging to his eyesight, we're told. A

...for now. The surgeon tells us she'd like Aaron to gain a little more weight, grow a little, and then she'll look into operating on the little guy. She'd like to see him hit 1 kilo before she cuts him open, and she seems to think that he can wait that long. Or at least a little longer. The problem is that he has air or gas trapped in a long portion of his intestine. The worry is that he has what is called NEC or necrotizing enterocolitis . It's an infection and inflammation of the intestine, that causes air to trap, and nothing to move through that portion of his intestine. If it progresses too far, and he can't recover with the aid of antibiotics, the surgeon needs to operate and cut out the infected portion of his intestine, stint the gap, and then reattach the two ends of the intestine at a later date. Sounds like fun, huh? Anyway...Aaron's hanging in there - his vitals are all good. And the surgeon felt as if his abdomen was softer this afternoon. A good s

Aaron is being moved to Bryn Mawr Hospital (about 10 minutes up the road from his current hospital) in case they have to operate on his intestine. So, anyone out there who checks this today, do me a favor, and pray a little...for Aaron, for DrummerWife, and for myself, because it looks like they most likely will operate, the only question is when. On the plus side - all of his numbers are still good, so he's pretty healthy - but this just needs to be done, I guess. =/

Today wasn't exactly a good day. Aaron's having some trouble. The doctors tell us that he's got some sort of blockage/infection/bubble in his intestine. Their primary concern is that it might burst, rupture, or perforate. If this happens, surgery is the only option. If it doesn't burst, rupture, or perforate, they're going to assume that it's nothing more than an infection, and they'll treat it with antibiotics. Here's hoping that it's an infection, and nothing more. I have to confess something, and this is as good a place as any to do so - I don't like being in the NICU when Aaron's having trouble. Even the little problems he's had a long the way - I hate it. I feel so useless, and so invaluable. I just have to stand there, watch my son in distress, and rely on the nurses and doctors to fix it, and it never happens quickly. So...I stand there, wanting to cry, and knowing that I can't because that'll just set DrummerWife off. And

According to the rules, DrummerWife should have gotten her first opportunity to hold Aaron today. Aaron, apparently, doesn't play by the rules. Instead, he had several apnea/bradycardia incidents (where he momentarily forgets to breath, and then allows his heart to stop beating for a little while to boot), and as a result, they couldn't get the feeding tube out of his belly button, so they couldn't get him out of the isolette and into mommy's waiting arms. So, it'll have to wait until tomorrow at the earliest. Hopefully tomorrow. Because it was awfully hard on DrummerWife to leave Aaron at the hospital today after expecting to get to hold him. On top of all of that, we ended up calling it an early day at the hospital. My allergies, finally in full bloom (pun absolutely intended), have gotten the best of me, and worn me out. I'm beat, DrummerWife is wearing herself down with our daily hospital trips as well, and we just decided instead of running ourselves ragged

Dear Aaron, Well - it's been a heck of a week hasn't it? You and mommy have both been through a lot this week physically - everyone else has been right there with us mentally and emotionally. Mommy and Daddy are becoming quite the medical experts. We have learned a lot about respiratory functions, ventilators, apnea, CPAP, heart valves, etc. We are quite smart, really. You have had a very good week as far as we are concerned. You are off the ventilator and only on the CPAP. The CPAP is a tube in your nose that gives you a little bit of oxygen (room oxygen actually - what we all breathe). Basically, it was explained to us that your lungs are like a balloon and a balloon is really hard to blow up at first - but once you get it inflated so much it's much easier. The CPAP keeps your lungs inflated that first little bit - so you don't get too tired out. Daddy and I have been down there everyday - mommy left the hospital on Tuesday - that was a really rough day for me. It was

...but I am. Aaron's probably in the middle of his first actual bowel movement right as I'm typing this. He was starting when I changed him around 8:00pm, and the nurse thought she might find a little surprise waiting for her when she changed him next. As weird as this all sounds - his first poop is a big, big step for the little guy. He's still chugging along, breathing room oxygen, on his own with just the aid of the CPAP (which simply keeps his lungs open, so he can easily fill them). Also, the nurse practitioner informed us that they could no longer hear the murmur from his PDA valve, so that may have finally closed. We'll know for sure after the next heart ultrasound tomorrow. That's all for now. Nothing really new to report other than the above. That's probably a good thing. :)

Big news today - Aaron is breathing on his own. The nurse did a couple of blood/gas tests last night, and they came back so positive, that the doctors decided to try taking Aaron off of the ventilator. He's breathing on his own, but gets a little bit of help from the CPAP. (As you can see in the pictures conveniently located to the right.) The CPAP keeps his lungs partically inflated so that he has an easier time inflating them himself when he inhales. He's breathing through his nose, and when he exhales, he blows adorable little spit bubbles out of his mouth. Additionally, a second brain ultrasound looked good, according to the nurse. So, everything is full steam ahead, I guess. Also, you can now view all the Aaron photos directly at http://www.flickr.com/photos/drummer . So, bookmark that page, AND this one, for the latest and greatest in baby Aaron-based news and photographs. :)

Well, first off, for those of you who haven't heard the news, we had baby Aaron baptised this afternoon. Our pastor was kind enough to drive down to the hospital, and baptise little Aaron in the NICU. I think that having Aaron baptised helped make it easy for DrummerWife to leave the hospital, and leave Aaron there. Also today, we've recieved word that Aaron's PDA valve (a heart valve that should shut upon birth) is indeed open, but it is also responding to treatment, and God-willing, he won't need any kind of surgery to close it. As evidence that it's closing, Aaron's latest chest x-ray revealed that there was little-to-no blood on his lungs, which is a very, very good sign. For those that don't know, Aaron's heart and brain ultrasounds both looked good. The heart ultrasound revealed the open valve, but otherwise looked good. And in the words of the doctor in the NICU, his brain ultrasound "looked perfectly normal." So, basically, everything s

The next morning, after several doctor visits, Dad gets to go visit with Son. Mom is still on bedrest, and can't leave her room. So...dad gets to touch his son for the first time. He cries. A lot. The nurse on hand is very understanding and explains all of the machines that Son is hooked up to, and Dad feels much better. He goes back and explains everything to Mom, and the small cadre of family that have assembled in the hospital room. Much of the weekend after that is a blur. Partially from sleep depravation, and partially because so much emotion has been expended that it's hard to think straight about it. The end result, as of right now, is this - Aaron Keith Young was born at 12:44am on April 28th, 2006. He is 1 lb. 5.9 oz. and 13.5 inches long. He is beautiful. And he is very fragile. Mom is healthy. She comes home from the hospital tomorrow, and that is going to be a very, very hard day for her. It will be a hard day for me, too. Because it's going to take

Allow me to start at the beginning. And by the beginning, I mean 4:00pm, last Thursday afternoon. I was driving home from a meeting with a work client. I was about 10 minutes from home, and thinking to myself "I can get home early, grab a water ice from the freezer, fire up the cable, and watch some X-Play on G4 (I have to get my video game TV-fix), and just chill out until DrummerWife gets home from the doctors." Then...my cell phone rings. It's DrummerWife. She tells me that the doctor is sending her over to the hospital for monitoring because her blood pressure is a little high. No worries, probably just in and out, but she'd like some company. No problem, I think to myself. I'll just turn around, and head to the hospital. About 30 minutes later, Nikki's getting monitored, the baby is getting monitored, and everything is hunky-dorey. Then they draw blood. 1 hour later, we find out that DrummerWife is SEVERELY pre-eclapmtic. So much so, that the doc