There Is Nothing To Fear But Fear Itself

I was putting this post together in my head for the past day. Over the course of that time, it morphed through a number of different subjects and emotions. I think that is because when your put in a situation like this, your mood is like a giant roller coaster that swings up, down and veers sharply in one direction or the other. Sometimes it feels like this is all a dream and we will wake up and it will all be "better". At other times I become so disoriented that I am not sure what day of the week it is or how many hours have lapsed since I last thought about it. Yesterday I had a horrible anxious feeling that simply would not go away and holding Owen and trying to feed him was almost scary because I was so afraid he would spit up and so worried that every set back would mean a longer amount of time in this hospital. I spend moments in denial...not asking the questions I want to ask (such as when can we leave) or explaining a strange movement as just a tick in order to calm myself and avoid hearing something I don't want to hear. I feel joy that Owen is here and lived despite the odds against him. Sometimes I am hopeful that regardless of what he has been through so far the road ahead will be bright and easy for him. At this particular moment I feel sort of sad because he may struggle (as many children do) and I only want him to feel complete happiness because he has been through enough.

The past 3 weeks has caused me to view the world from a whole new perspective. I would not say I had a hateful impression of society in general but I certainly felt that the majority of people were flawed in the fact that they only cared about themselves and would only do what they needed to get ahead. For myself, I was blissfully ignorant of the deeper struggles families and individuals were facing right in front of my eyes and I took the beauty in my life for granted.

Since Owen has been born and through his illness, my entire family has experienced an outpouring of love and support. Some of it has come from the most unlikely of places. We have found ourselves utilizing services that we "didn't need" before or so we thought, only to find some of the most wonderful and giving people we never would have noticed before. April and I would both like all of you to know that we recognize and appreciate everything everyone has done for us....we could not be doing this without you. Every word of support and kind gesture means so much and in some instances actually gets us through the day...thank you!

Okay...enough of my emotional baggage...lets talk about Owen. Over the course of the past couple of days he has been relatively stable His temperature continues to fluctuate but not to alarming levels as it was before. His feedings are still an issue...but it is getting better. They have completely removed the PICC line from him and are feeding him exclusively from the bottle again. So once again, he is cord free (with an exception of the little heart monitor patch that we can take off when we feed him). His spits are still larger in volume but they have begun to thicken his formula and give him more frequent lesser amount feedings. This just started today so time will tell whether it was a good or bad choice. The good news is that he has been consistently gaining weight and it now up to 6 lb. 5 oz. 2 more pounds and he will be up to Brendans birth weight! His head swelling has not been as substantial. They are still worried about hydrocephalus and monitoring him very closely...but at this moment they are not feeling any surgeries are necessary.

The physical therapist was here yesterday and checked Owen over. She said his overall body tone was a little bit lower than what she would like to see although he made many encouraging movements (especially with his head) that she thought were all good signs. April and I were shown some exercises to try and positions to put him in that may help with his strength. Dr. Elmo visited and let us know that some of the blood has absorbed back into the body and that they do see a small portion of the right side of the brain that they feel is most likely damaged as a result of the extensive bleed. The effects he said (are unknown) and could range from what he felt would be motor issues (most likely) on the left side of his body. But then again, he said, the brain could rewire itself and it could almost nothing.

Today Frank came in to let us know exactly what his plan was to try to improve his feedings and assist him in keeping it down. He suggested that once we are allowed to leave the hospital, we would want to make a point to choose a doctor for Owen that was a bit more in tune to a child with some of the setbacks he has experienced so far and may experience in the future. One thing about Frank is that he is extremely blunt. This causes some technical diffculties when it comes to me remaining in my blissful LA LA Land when I don't feel like coping with the world. Regardless, Frank smacked me back into the real world when he let us know that he will assist us in making a plan to get Owen seeing the right kind of doctors and to assist us in coninciding all of the necessary appointments into a tighter time frame so we can make fewer trips back to Madison once he comes home. He told us that the bleed was severe and that although it was more concentrated in the ventricles...there was still a portion that had made it into the actual brain matter and he felt there will be problems. This of course raised questions in my head and the denial reflex started to light up and although I knew I could continue this process by being quiet...I decided to ask what he felt some of the possible outcomes would be in his opinion. His answer, Cerebral Palsy. Frank felt that the most likely obstacle Owen would be facing is that of a physical nature and not so much of a mental one. Of course, time will be the only true test as to what exactly is going on. He said that normally indications will be a bit stronger at 6 to 9 months and that in the meantime, he would make sure we had all the necessary support outlets to proceed as easily as possible.

My old friend fear returned at the result of those words. Anger was the initial knee jerk reaction, but then I thought who would I be angry at? Frank? For honestly answering my question instead of sugar coating it with rainbows and unicorns? No, fear was more accurate because we don't know what will happen or how easy or how hard it will be. That concept drove me to write this post and have the realization that it really doesn't matter. Owen is here and at one point, there was a good chance he wouldn't be. He is incredible whether he dance the tango or not. There is not a case like Owen's out there so there are no statistics for us to weigh. It is a one day at a time thing (which sounds so cliche but true) and that is what he have been doing...and why change a technique that works?

Brendan enjoyed his day away and has been moderately better behaved since he joined us again. He needs his mom and dad BOTH all of the time. When he was napping he would talk in his sleep saying DAD! DADDY! Not quite so sure what that was about. He is now doing puzzles and playing with his darn loud toolbox. But if it makes him happy...we'll take it.

Owen's turn

Since I posted some pictures of Brendan yesterday, I thought we'd better post some of Owen today. These are from last week and over the weekend. I will have to try to get some new pictures this week. I swear his cheeks have filled out. He is up to 6 lbs 3 oz today.

He was moved over the weekend from a bassinet to a big boy crib.

Last week hanging out in his bouncy seat.

Fun with Brendan

On Sunday we took Brendan to the Henry Vilas Zoo then stopped at Ella's Deli for dinner on the way home. If you've ever been to Ella's Deli, you know that the place is packed with tons of different things to watch as they move and spin or whatever it is that they do. Above our table was a Dumbo that flew from one side of the room to the other. Brendan was not amused. Here is a couple pictures of him watching Dumbo and a picture of Dumbo itself so you can see how un-frightening it really is.




He eventually coped with it and was amused with other stuff in the restaurant.

As I said, we went to the zoo earlier in the day. Considering it was naptime, Brendan did pretty well. We never did make it thru the whole zoo. It was too busy and we wanted to get back before Owen's 3:00 feeding. As soon as Brendan spotted the play area that's what he wanted to to. He went down the slide and this is what he looked like when he came out the other end.



Just more proof that he really does have hair. As fine and light as it may be.

I have some videos to post too but it's not working from here for some reason so I will have to do it from home. Be sure to scroll down for the latest Owen update.

Inevitable

We met a new doctor today....his name is Dr. Greer...but that is not fun so I will just refer to him by his first name...Frank. He is a tall lanky man who seems to be butt optional...so he is constantly pulling his britches up. This is his first day on Owen's case, but my first impression is that he seems pretty laid back, open to suggestions but overall decent. We will see. He did his initial exam on Owen today and he gained 34 grams! Which means he is still gaining weight so that is a plus. His spits are still quite large but we are beginning to see a trend. When he spits up it is usually one spit up and even if he eats more after that, he never seems to spit again. So we are going to continue to weigh the spits and then feed him that much extra during his feedings. This way he is still getting the full 35 cc's (which is where he was moved to today) and they will just continue to monitor his intake and behavior. They want to get him off the TPN which he is being given for nutrition because apparently prolonged use of this can cause liver issues. Hmmm...maybe mention that to us BEFORE you give it to him for a period of time? He has also been taken off him phenobarbital (the anti seizure medication) which was being used to reduce the severity of the seizures should he have them. That is great...but then I also worry what happens if he starts to seize? That's the good news...now the not so good news.

Frank said that Owen's head circumference has grown again. While it is not a substantial growth in the last day...it was too much over the course of the weekend. He felt that it was definitely an indication that a shunt would be necessary. Frank feels that there is enough fluid building up will certainly begin to cause issues and will need to be removed. Dr. Elmo is back and is planning on coming to visit us today so we will get his views on it then. Frank feels that the procedure itself is not overly risky (except they need to put him under for it and they would have to make sure he could handle that)...but the shunt has a risk of infection and of malfunctioning...so it would be one more thing to be concerned about. On the other hand, the sooner the fluids are gone, the blood dissipates and the brain swelling goes down...the sooner we will really get a handle on what is going to come next or the aftershocks of all of the issues. Right now there are things that we worry about that can be chalked up to the swelling (like his fluctuating temperature). We will get an idea whether things will stabilize or not.

Owen's behavior has been good and bad. When he wakes up, he is very alert. He tracks you with his eyes, listens intently when you speak. He has been staying awake longer (not so much today though) that he has been in the past. All good signs. But his arms and legs have not been as busy as before. They are certainly operating...but Frank said his legs seemed less active than they should be...and before he would kick your face off when you went at them. Sometimes his hands are very busy with his pacifier or sucking on his fingers...but today he is a bit more subdued. Perhaps it is because he is just feeling lazy...but there is no gauge so we just don't know.

What I would like to know is how much longer will it be before he can blow this Popsicle stand? I am tired of hospitals and might quite possibly be on the verge of a psychotic break...but then I again...I guess I am typically in that state. Working and living the hospital lifestyle is killing me...although I like the peacefulness of the evening/early morning hours because the phones are not blowing up. I just don't ever have any energy...but you are not on here to read about me now are you?

Brendan is having a much deserved mini holiday with his Grandma Ahlers today. He is at the Deer Park as we speak and was given his favorite ravioli for lunch. He is getting some sunshine and an excursion away from the hospital...and I think that will be a good thing. Plus for April and myself...a day of peace and quiet is certainly not a bad thing. We will be picking him up tonight and bringing him back with us tonight...so he will be returning before he knows it.

That's where we are for now...in our tiny little room...waiting for what comes next. We will keep you posted.

Sunday night check

There really isn't anything new to report since Jeremy checked in yesterday. When we got to the hospital today, the nurse reported that Owen gained another 80 grams, I believe. I can't remember exactly. It was a total of 5 oz in the last two days. That stuck in my mind more than the grams. Pick a measurement and stick with it, people. My little brain can't handle both.

He was up to 25 cc of breast milk with added formula yesterday. He started to spit up with that amount. I was surprised when we got there today and he was increased to 30 cc. He continues to spit, but it's not every feeding and it's not a huge amount like before. So, with the added nutrients he is getting intravenously they are comfortable. It seems that when he is wide awake when he eats he keeps it down better than when he's half asleep. We will talk to the doctors tomorrow and see if they have come up with any answers or solutions.

We were there for his noon feeding today and he was wide awake. After he ate we ran down for lunch and took Brendan to the zoo (along with Tony & Tina). We returned for his 3:00 feeding to find out that Owen was wide awake the entire time we were gone. I feel bad because when he is awake and the nurses are busy, he just lays in his crib looking around. It bothers me how little stimulation he gets. I mentioned that and a nurse brought in a mobile for him.

Brendan had a decent day. He went to the zoo and had a good time. It was too busy there for me. We didn't see all the animals but enough to make him happy. We'll go back some day during the week.

That is about all there is to report right now. We'll check in tomorrow. I'll try to upload some pictures then too.

A New Concern

No news on the heart and kidney ultrasounds yet. They are still hoping for today. All they can tell us was that he has two kidneys.

When we arrived this morning, we got the news that Owen gained 3 oz. That was the good news. The bad news is that the circumference of his head has expanded 1 centimeter. This is a strong indicator that hydrocephalus is setting in. They said there is a slight possibility that they could have measured inaccurately the last couple of days and the growth was a bit more gradual...but they know he is at 36 cm today. They will measure again tonight and see how much or how little it has grown and make a plan from there. If it grows too quickly...a shunt will be needed to drain the fluid. If this is the case, they would most likely put an external shunt in at first because of his size and then eventually switch it. I hope that is not the case...but we will see. There is also a chance that the fluid may stop building and no action would be needed so I will hope for that. They are happy that his pulse and breathing have been stable as an increase in fluid too suddenly could affect that. The doctors said if they see any fluctuation in that they would be more alarmed. It is all a waiting game. Of course, we were intending to go home tonight to sleep in our own bed but if he is misbehaving we will stay. They increased Owen's feedings to 25 cc's because he was keeping his food down. During the last feeding...he spit up. So we are keeping our fingers crossed he does not do it again. We have enough to worry about without worrying about his digestive tract.

So that is a quick note of our morning and I will be back later to tell you about our afternoon.

The Pendulum Swings Both Ways

It is still early in the day, so a great deal more can come to pass over the course of the next few hours (as it so typically has these past few days), but so far it has been a good day with a few minor setbacks.

When the doctors came in this morning, we found out that Owen had gained 3 oz. That does not sound like much in the grander scheme of things but in his specific case, it is fantastic. The weight gain can be specifically attributed to the fact that he had the PICC IV put in yesterday, but hey, if it is giving him the nutrients he needs, we'll take it, He has only been given 15 cc's of breast milk every 3 hours. But once again, a little good news....while the amount is small, he has not spit up and will now be increased to 20 cc's during his next feeding. The upper GI results have come back as....wait for it....inconclusive for any abnormalities of issues with his digestive tract. So can you believe that again we have no explanation why he is spitting up? Yes I believe it too. They also did not find any evidence of a reflux disorder. They are going to just continue increasing the amount of his feeding a little at a time as long as he manages to keep it down. This gradual increase will insure that we are here many more days to come. His heart rate went a little strange last night briefly and went down to 60...they woke him up a little and it rose right back up again. Apparently this happens frequently in babies and they are not concerned about it? I suppose the average baby does not have a monitor on their heart 24 hours a day...so I will take that situation with a grain of salt. Some other level was mildly elevated...but they were speak the foreign doctor language and I had no idea what they were talking about. By the time they asked for questions...my mind had moved on. More tests are on the way with a blood test to check for a couple disorders that were rare and I have never heard of. Possibly an ecocardiogram because they are suspicious they may have heard a murmur of his heart. I had a heart murmur when I was young and grew out it...so I choose not to flip on account of that scenario either. His temp has been good...so that is a plus. So he has been a little down, but far from defeated.

On a happy note, he was VERY wide awake when he was up this past time. Probably more wide awake and alert than he has ever been and leaps and bounds better than he has been these past couple of days. His eyes were bright and focused. His hands were busy playing with his pacifier and eachother. When we set him in his seat, he was bored and moving around his hands and watching them as he did so. He reacted every time Brendan banged something around (which was often) and would follow the noise. His body had much more tone to it than I had seen in the last few days. He had been feeling very limp. He was awake for well over an hours and ate and kept down the food he was given. It was pretty refreshing to see him so on the ball. You have to take the little bright spots as they present themselves you know.

Brendan has embarked on yet another consecutive, full hospital day. He has had a few less than stellar moments...but he is also taking this opportunity to turn on the charm with the nurses. He has been saying Babette all day (even though she is not here and his parents are not a fan of the Babbles). He flirts big time with the nurse on duty today...her name is Julie. He runs around the room saying oh Julie! Where are you? He even showed her his tool box which he is not a big sharer so that is huge. He has been much more interested in and patient with Owen so far. He likes to sit in a spinning chair and observe Owen in his bed. He is also curious and observant about the diaper changes and feedings. I am extremely impatient today...but Brendan is actually being decent. Except of course for when we tried to eat lunch and he would run out of the cafeteria (where we could still see him). The people wandering by would look at him with this alarm as if he was not being watched. Then he would proceed to stick his face up to the windows of one of the doors and make faces at people. His BOOBS 2009 tour has continued too as he proudly says boobs prominently and repeatedly when the doctors are in the rooms explaining things. A little charmer that one is.

So, the day continues more in the right direction than in the wrong...but of course we have gotten a little of both. They are doing the ultrasound on Owen's chest as we speak to check for the murmur.... Hopefully we can top the day off on a little bit of a high note. We will see. There are more doctors planning to poke their heads into the room throughout the day.

Announcing...

This is a little late, but that's ok. When my friend, Julie, came to see Owen last week she took one quick shot of Owen. Considering how yellow he was at the time this turned out great. She and her minions are miracle workers. Thank you, Julie, Sandra, and anyone else who helped with this.

As soon as we break from this place we will have a full on photoshoot.


The morning after Owen was born, before we realized there was any problem, I looked up his name and learned one of the meanings of it is "warrior". Who knew he'd live up to that name. We've been asked where we came up with Patrick. We were married on St. Patrick's Day

I thought we needede a lighter post for the day. You're welcome.

It Never Ends

Today has turned about to be a significant setback in the quest to get Owen out of the hospital and home where he belongs. He has lost 40 grams since yesterday. This is not a good thing since he managed to lose double the weight he had gained the day before and the doctors were not event content with the gain when it did happen.

What does this mean? Well, at least one more week in the NICU while they run a series of studies on his digestive system and major organs to see if they can find any cause for the mass quantity of spit up that seems to occur during every feeding. They will be reattaching him to an IV to feed him. He will continue to bottle feed but only a very small amount (15 cc's) and the remainder of the nourishment will come from the IV. They ran an ultrasound of his stomach yesterday and the tentative results found nothing conclusive as to why he is getting ill. They also did another head ultrasound and did not find any major changes in the brain that they feel would be contributing to the problem. The UW radiologists have not read the scans yet so nothing definitive has been said. I am a little concerned why they have not seen a reduction in the amount of blood in his brain. They had estimated that it would take about a month for the blood to dissipate and then they would be screening him for hydrocephalus. Tomorrow will be the 2 week mark (oh my, we have been in this darn hospital for 2 weeks!) shouldn't a large amount of blood be gone by now? They are also planning an upper GI to check for digestive issues. They said it will not be fun for him, but at least it is not invasive (yet). We will have a whole new series of specialists getting involved with Owen's case and that will mean even more opinions and greater confusion.

Owen has continued to be much less fiesty than usual. When he is awake, he is wide awake and follows you with his eyes and does the things babies do. The difference is that he does not cry a great deal or even seem to mind the constant poking and prodding (they drew blood yesterday and he did not care). Of course, as many times as he has been poked in prodded in his first few days of life...he probably is used to it. We are hoping once he gets a little bit more nutrition in his system, it will rile him up a bit and give him back some oomph.

Brendan has all of his feist, Owen's feist and then some. He has been a beastly little fire cracker. He has been attempting his version of behaving under stress....which yields interesting (and sometimes publicly embarrassing results). We just take into effect that his whole lifestyle has been altered also and he needs to cope. Unfortunately, with the decline in Owen's progress the last few days....the hospital has to now become part of our lifestyle since it will not be going away any time soon...mwah, mwah, mwah.

There are a number of results that need to come in before we came make a definitive game plan as to how we are going to handle all of this. Obviously we will be spending a majority of our time in Madison and will probably having to stay overnight also since it is not very cost effective or logical to commute constantly. I will have to incorporate my job into this hot mess somewhere also. I am going to ponder that for a day or so. I will start browsing for a good muzzle and leash for Brendan...the adventure will continues and as always, we will keep you posted.

The Trials and Tribulations of Owen: Book 2

It seems as if we are moving on to a whole new set of adventures in the life of Owen. Where we had once believed that we were bringing the little guy home soon and proceeding to a life of a little more simplicity...we have since found that we are instead embarking on a whole new set of wonders and tests. I can't say I am tremendously thrilled at the prospect of many more days at the hospital...but you know how it goes.

As you all know...Owen's stay in the NICU was extended a result of a mild fever. This issue has since resolved itself but morphed into another concern...weight gain. Owen has not gained a whole lot of weight and unfortunately, his weight loss has exceeded his weight gain. To compound the situation, he has been spitting up regularly and spitting up rather large amounts. There is a pattern to the spit up. When he wakes, he typically eats a portion of his bottle, burps and then consumes the remainder. The spit up usually takes place during the first and second part of his feeding. We have tried to resolve the issue by sitting him up, feeding him a smaller beginning amount, burping him for a longer period of time, trying to make sure he is more awake before beginning to feed him...nothing has done the trick. It has been a very rare event that he spits up after the second part of his feeding...but it has been consistent enough that the doctors are concerned. So now we will begin a string of blood tests to see where his levels are (again) and a series of gastrointestinal studies to rule out any possible problems there. The result will be many more days back and forth to Madison and caring for Owen in a hospital setting. UGH!

The doctors also discussed another head ultrasound soon to see what is going on with the blood in Owen's head. They feel his vitals are all relatively stable and they have not been concerned about his color. When it comes to his tone, they feel he is pretty much in line with the average 2 week old infant, but they are also monitoring that closely. Today I have been concerned about how awake he is when he is awake. He does not seem quite as peppy as he did yesterday...but that could be as a result of a number of things. Overall the consensus amongst the doctors as to what comes next or what to expect is they don't know. We hear I don't know many times every day when we ask how long it will take the blood to absorb, or if we should be concerned about his mobility, or how long they think it will be before he gets to go home. Sometimes those three words, I don't know are extremely defeating and we are left simply trying to hold our heads up high in lieu of beating them against the wall in utter frustration.

Brendan continues to be a little less than cooperative and angry at the whole situation. While April and I are learning better coping techniques to contend with his less than savory mood...he is still excessively needy. When he needs attention, mom AND dad need to be involved. When we go somewhere, we both need to go. He does not want to leave a room unless we are both following. I think he is afraid that we are going to disappear for hours at a time like we have been and he is trying to prevent that. As parents, we are left with the dilemma of which is worse...letting him sit with Grandma so we can concentrate on Owen's needs and minimize the amount of time he has to stay at the hospital, or taking him with us so he can spend time with us but confining him to the hospital for days at a time. It is very much a Catch 22 and one scenario does not seem to work out better than the other.

Reality has also been biting at my heels as my place of employment pursues me to try to resume business as usual. While I certainly value having a job...and don't want to jeopardize my employment...I am also not fully capable of moving full steam ahead with the hotel business. Especially when my younger son's health is in question and my older son is not coping extremely well. Add to this the fact that April is still not able to drive and lift Brendan...a whole new set of obstacles present themselves. But, I am trying. I use my little moments of clarity to address the largest issues at hand and then focus back on my family. I also feel that I am technically using my 2 weeks of vacation right now and I am within that time frame right at the moment, so I should be able to give the greatest amount of concentration to my family. The bills need to be paid and the money is going faster than it is coming...so I will have no option other than to step up to the plate in good time.

As we speak, Owen is having his blood drawn and Brendan is running at the breast pump shouting BOOBS! BOOBS! in front of the nurse. Never a boring moment I guess. I suppose we can find the humor where it is available (thank GOD for Brendan) and count are blessings that Owen is here...even if he is hanging out at the hospital for an extended period of time. And finally, just proceed one day at a time doing the best we can. Nothing else can really be expected right now.