Tuesday, May 29, 2012

Interstage clinic visit 9:31pm May 29th

Ok, so for those of you who have been following the blog, you know that on Thursday after we got home Owen started having bloody stools.  He had a few more on Friday, but it cleared up pretty quickly and then over the weekend he was doing really well.  Yesterday Owen puked three times after feeds, which he hasn't been much of a puker, so Cassie texted the interstage pager to let them know what was going on.  They weren't very concerned about his puking (which he has been doing more of lately) because he is still gaining weight and reaching his maintenance goals.  Then after his 9pm feed last night Owen got super agitated and we were having trouble calming him down.  We could calm him down, but every time we moved him he would start screaming again.  Cassie texted the interstage pager again.  We finally figured out that Owen was getting too hot so we cranked up the air conditioner and got out a fan to get more air moving around Owen.  Once we figured that out Owen was a lot more calm.  Then about midnight last night Owen started having bloody stools again.  It has been every poopy diaper with blood in it since it started last night, which is been at least eight diapers.

So today we had our first interstage clinic visit down at Children's Hospital.  Out appointment was for 2pm this afternoon, and since it takes about two hours to get down there, we left our house around 11am to bring Bear over to Cassie's parents' house.  While there we gave Owen his "noon" feed (we gave it to him early) and then we left for Milwaukee about 12pm.  We packed three bottles for Owen, one for at Cassie's parents' house, one for while we were at the clinic and one just in case it took long in Milwaukee.  We also packed stuff just in case they would decide to admit Owen again because of his bloody stools.  The visit went really well, and they didn't decide Owen needed to be admitted.  We talked with one of the nutritionists about Owen's feeds and how he has been getting bloody stools and getting fussy after feeds. We think that Owen might have some allergy to the formula so we are switching Owen to a hypo allergenic formula (which happens to be super expensive) and hopefully that will help with the fussiness and stop the bloody stools.  So Owen has been taking in on average 138ml per kg since he has been home, which is pretty impressive.  Everything else was looking fine.  Owen did have one bloody stool while we were at the visit (we had been saving his diapers at home but we managed to forget to grab them when we left), so the doctors and nurses got to take a look at it.  They weren't really that concerned, but of course we are supposed to keep on watching it.  They decided to do a blood draw just to check Owen's numbers on his BNP and his hematocrit.  His hematocrit was fine, so they sent us home before they got the numbers back on his BNP.  We ended up leaving the hospital about 5pm (horrible time to be leaving, the traffic is pretty bad).  Now we are home and Cassie is giving Owen a bottle of the new formula.  He doesn't really seem to be very excited by this new formula, so hopefully he will catch on and pick right up with this so that we don't have to get him admitted because he isn't reaching maintenance anymore.

We have been forgetting to upload the pictures that we have been taking (yes we haven't just stopped taking pictures of our adorable son) so forgive the picture dump.

Saturday, May 26, 2012

Still home 10:07pm May 26th

So we didn't end up going back to Children's Hospital yesterday.  Throughout the day the amount of blood in Owen's poop decreased and eventually just disappeared.  The Aurora VNA nurse stopped by yesterday to do an evaluation of Owen.  When she got here after 11am we hadn't actually heard back from anyone at Children's Hospital about whether or not we should take Owen back down there, but they called back before she left and told us that they weren't really worried.  Last night my dad came over to help install the window air conditioner that we got Thursday night.  Other than that yesterday was pretty tame.

This afternoon my parents and my brother Jason came over.  Dad helped me put together the earlier Father's Day present from Cassie, a nice new charcoal grill.  Mom helped with things in the house like doing the laundry and altering some of Owen's outfits that were poorly designed.  This afternoon I cut the grass, which hadn't been done in two weeks.  I just managed to finish the lawn before it started to rain outside.  Now we are just chillin in our air conditioned apartment for the night.

Friday, May 25, 2012

Good night's sleep 8:19am May 25th

So I don't know if it was just fluke or if this is going to be the norm, but Owen actually seemed to sleep through the entire night.  Shortly after we found that bloody stool in Owen's diaper last night he fell asleep, which was about 9:30pm.  We still feed Owen every three hours, but luckily Owen will sleep while he eats and he didn't wake up while we were feeding him overnight.  He didn't actually wake up for sure until I was changing his diaper about 6:30 this morning after I feed him at 6am. Now we can't say weather or not he woke up in the middle of the night while Cassie and I were sleeping and didn't fuss at all, thus not waking us up, but it encouraging that Owen's days and nights aren't completely messed up.  We thought that we were going to have to work really hard to get Owen into a good sleeping pattern so that we could get some sleep, but maybe we won't.  Around 7:30am I was changing Owen's diaper again and there was bloody stool, but it didn't look any worse than the one he had last night so we aren't too worried about it.  Cassie texted the interstage pager just to be sure.  Now we are just waiting to hear back form the nurse after she talks to Dr. Ghanayem.

Thursday, May 24, 2012

Scare 10:10pm May 24th

So we got home this afternoon about 2:30pm.  While I was giving him his 3pm feed Owen was almost done with the bottle and then he puked on me.  It was crazy, I would have to say that it was like 20ml of formula that came back up.  I was sitting in our brand new chair and his spit up went right in between the arm and the seat of the chair.  So much came back up that there was even a puddle of formula on the floor underneath the chair.  Other than that, the afternoon was pretty uneventful.  Earlier today Cassie decided that we had to get an air conditioner because it is supposed to get really hot this weekend and it isn't really good for heart babies to get overheated.  So this evening I went with my dad to Lowes to get a window air conditioning unit, we decided that it was something that we could use some of the benefit money for.  While we were gone, Trisha Blish and Tanya Traurig came over to get some baby time.

So Cassie was feeding Owen at 9pm and like he often does, Owen was occasionally taking breaks to poop as he was eating.  Midway through the feed, Owen was starting to get kind of irritated, so Cassie asked me to change his diaper.  When I went to wipe Owen's butt, I looked in his diaper and there was blood in his poop.  It was kind of weird, the blood was kind of just sitting on top of the poop it wasn't mixed in at all.  The blood was a nice red color, not brown or black which can mean there are seriously issues.  Needles to say when we saw the blood in the diaper we thought we were going to make a return trip to Children's Hospital.  So Cassie immediately texted the interstage pager.  It was kind of frustrating because it took a little longer than the other times for them to call us back.  The doctor didn't seem too concerned, he told us just to keep an eye on it.  If there is more blood or a change in color of the blood we will have to call them again and we will discuss what we have to do, but as long as there isn't a larger volume of blood, even if there is more bloody stool, there isn't really anything to worry about.  We are thinking that his bloody stool might be due to the fact that he got a blood transfusion yesterday because the last time he got a blood transfusion he had bloody stool too.  That time they did all of these tests and weren't able to find anything wrong.  So hopefully Owen won't have any more bloody stools or at the very least nothing worse than we saw so we don't have to make another trip down to Milwaukee.  I wonder if that would be some sort of record, only home for 6 hours and already having to go back into the hospital.

Jail break 10:56am May 24th

So they rounded on Owen right around 9am.  They are going to be letting us out today.  They have him unhooked and everything, now we just have to wait for them to finish rounds of the floor so that we can talk to the NP from the interstage program to set up an appointment for next week.  And I forgot to blog about this yesterday, but it appears as though Owen has figured out how to roll over on to his right side, he actually did it a bunch of times.  Not long before he will be able to roll over onto his stomach.

Wednesday, May 23, 2012

Morning rounds 10:00am May 23rd

Rounds time.  Well, last night Owen was kind of irritable.  His renal stats have been lower than usual and his pulse ox has been lower as well (they took him off of oxygen last night).  They have decided to give Owen 10ml/kg of blood, which means he will be getting between 40 and 50ml of blood total.  Because Owen was more irritable last night and they are going to be giving him some blood, they decided that it probably wouldn't be a good idea for us to take him home today, they don't want us to have to bring him back down if something happens.  They are also going to be taking a blood pressure on each limb to see if there is any difference where his blood pressure is taken.  On the catheterization yesterday, there was some differential pressure in the aorta and they want to see if that will translate into differential pressure in his extremities.  So hopefully only one more day in the hospital.  I hope this transfusion does the trick and brings his stats back up and calms him down a little bit, we want to go back home.

Tuesday, May 22, 2012

Back in the room 12:27pm May 22nd

They wheeled Owen back into the room just after 12pm.  Owen did really well in the OR.  They did do the thing similar to an epidural, but Owen was still flailing around a lot when they got him back in the room.  The anesthesiologist said that he was able to get a look at Owen's vocal chord and it looked like they was still some asymmetry between the two vocal chords, but he wasn't behaving like a baby with total vocal chord paralysis.  His pressures looked good when they were in his heart so that is encouraging.  There did appear to be some narrowing of his right pulmonary artery which they will have to address during his Glenn, but his left pulmonary artery looked pretty good.  They did find one collateral vessel which they plugged up.  It was pretty cool, the doctor that did the catheterization actually brought up the videos that they took during the procedure and was explaining everything to us.  If we go down to the medical records, we should actually be able to get copies of some of his x-rays and stuff.

Now Cassie is holding him and giving him a bottle.  He was really upset while they were getting hooked back up to all of the monitors in the room and he wouldn't take his nook even when they coated it with sugar water.  Once he got into Cassie's arms he calmed right down.  They are putting him on a little bit of oxygen right now because his oxygen saturation is a little bit low, but that should only be temporary.

Update 11:05am May 22nd

The nurse just called us to update us on how Owen's catheterization is going.  So far he is doing well.  They were just taking some pressure measurements, so he will probably be in the OR for another hour or so.

Empty room 10:04am May 22nd

They just took Owen out of the room to bring him to the OR.  Owen's room feels so empty without the crib in it.  When they were in the room talking to us, we mentioned that we thought his vocal cord was coming back and they said that they might be able to get a look at it before they intubate him.  If they can get a good look at his vocal chord, we won't have to see the ENT to get an idea of how his vocal chord is performing.  They are most likely going to be giving Owen something similar to the epidural that Cassie actually had during labor to numb Owen's legs so that he doesn't feel any pain during or after the procedure when they are catheterizing him.  It is kind of cool, because Children's Hospital is actually a teaching hospital, when you come across a teaching moment.  This morning during rounds we got to learn what actually causes a murmur in the heart.  Murmurs are caused by turbulent blood flow due to a pressure differential, and of course the blood always flows from a high pressure area to a low pressure area.  So Owen has a continuous shunt murmur because there is always a pressure differential between his aorta and pulmonary arteries.

Monday, May 21, 2012

Pictures! May 21 10:04pm

Here are some pictures that we haven't posted up here yet. Some are from this stay and others are from his previous hospital stay.

Procedures 6:00pm May 21st

So earlier one of the Cardiology fellows came in to explain to us what they are going to be doing tomorrow and answer any questions we might have.  They are going to be doing a heart catheterization (a routine procedure that they do on heart babies to make sure that there aren't any other problems that they need to address during surgery that there isn't any easier way to see), which means they are going to be sticking a tiny catheter up into his heart.  They will most likely be going in through his groin (like they did for his pick line), but if neither of his veins in his legs is good enough, they might go in through his neck. When they get into his heart, they are going to be taking pressure readings in the different chambers and they will be looking at how their work is holding up.  They are going to be injecting a contrast dye into his pulmonary arteries so that they can see if there is any narrowing in x-rays.  If there is narrowing like there was in his aorta, they will stick the catheter in there and inflate a balloon to push it open.  Because there is a lack of flow to his lungs, there is also a possibility that his pulmonary arteries are narrow the entire way and in that case, there isn't anything that they can do right now to correct that, it will have to be addressed during his Glenn procedure.  They will also be looking for collateral vessels, which are vessels that the heart will grow in response to decreased flow in order to compensate.  Because they are addressing flow issues through surgical procedures, they don't want the heart to try and compensate on its own, so if there are any collateral vessels that they don't want starting to form, they will physically plug them up while they are in there with the catheter.  Owen will be sedated for the procedure and just to keep him calm through it he will also be intubated, but they will most likely take him off of the ventilator before he comes out of surgery.  The whole procedure usually takes around two hours, but if there are any other issues they need to address such as collateral vessels or narrowing pulmonary arteries, it will take another hour or so.  He will most likely be going in to surgery tomorrow around 10:30am, but that is subject to change because they are doing another procedure before Owen and his time is dependent on how the other procedure goes.  As with any surgical procedure, there are risks involved, but since Owen doesn't have any other complications at the moment the risks are extremely low.  Hopefully everything goes well and his heart looks good.  They will most likely be keeping us overnight tomorrow, but there aren't any reasons that we shouldn't be able to go home on Wednesday at the moment.

Morning rounds 9:12am May 21st

We just made it to the hospital this morning in time to participate in the ritual that is rounds.  So Owen is looking good.  They haven't seen anything to make them nervous, all of his stats look good.  They have decided that tomorrow they are going to do a catheterization as long as we are here to get a better look at Owen's heart.  They have to do a catheterization anyway before he comes back in for the Glenn and they thought it would be nice to do it when we are already here so that we don't have to make a special trip down here.  They are going to be coming by later today to explain more of what they are going to be doing tomorrow.

Sunday, May 20, 2012

Morning rounds 10:12am May 20th

So since we got here, except for when they were checking him over when we first got to the room, Owen has been really calm.  He has pretty much just been sleeping, maybe he got used to hearing the constant beeping of the monitors and can't relax without it (I hope that isn't the case otherwise we are never going to get any sleep at home).  Anyway, they rounded on Owen about an hour ago.  All of his labs looked good his BNP was only 128 and his x-rays looked unchanged from when he was discharged on Wednesday.  There are no signs of any infections and he isn't feverish, so they aren't really sure why Owen was getting so upset, it might just be normal baby stuff, but they have to be really careful with the heart babies in case something is wrong.  They are going to keep us here to observe for a few days just to make sure that everything is OK.  Maybe now we can get Owen scoped out by the ENT without having to make a special trip down here because the ENT isn't in the clinic on Tuesdays when we would be coming in for interstage checkups.  I think we are also going to see if we can get them to modify Owen's med schedule so that it makes more sense for at home.  Giving Owen medications in the middle of the night at the hospital is no problem because the nurses have to be awake all of the time, but when you are getting up more often in the night to give him meds than to feed him it doesn't make any sense.

Back in the CICU 4:55am May 20th

So we are back at Children's Hospital right now.  For most of the day yesterday Owen was doing just fine.  This afternoon, Cassie was getting a little worried because Owen hadn't pooped since sometime Friday afternoon, so she texted the interstage pager.  Wouldn't you know it shortly after they called us back to see what was going on Owen pooped.  Then as it was getting closer to Owen's midnight feed he was starting to get really fussy and didn't really seem that interested in feeding, then he pooped again and seemed to calm down.  So we were all in the bed room and suddenly Owen was started fussing.  No matter what we did he wouldn't calm down, everything we tried would only calm him down temporarily and then he would be crying at the top of his lungs again while we continued to do everything we could to calm him down.  Cassie decided to put his pulse ox on and his O2 saturation was in the low 90's.  When he seemed to calm down a little bit his oxygen saturation dropped a little bit, but then he was getting upset again, so we decided to text the interstage pager again.  After they called us back, we put his pulse ox back on and it was back in the 90's.  After they consulted with a doctor they told us to drive Owen back down to Children's hospital to get admitted.  So then we started scrambling to get stuff together to come back down here.  We had to make sure that we had stuff together for Bear so that we could drop him off by Cassie's parents' house.  So now we are back down here.  We got here right around 4am after leaving our house right about 2am.  Wouldn't you know it that as soon as we got in the car Owen settled down and even went to sleep.  He hardly even made a peep on the drive down here.  They already took some x-rays and now we are waiting for lab to come and draw some blood.  We are actually in room 320, the room right next to the one he was in.  Right now Owen is pretty relaxed and Cassie is giving him a bottle.

Friday, May 18, 2012

Delivery 10:30pm May 18th

So apparently it isn't a very good idea to feed Owen in the bed while Cassie is sleeping.  Last night for his midnight feed, I decided to sit down on the bed to feed Owen while Cassie was sleeping.  I actually started feeding Owen before midnight and then right at midnight the alarm that Cassie had set went off (she has alarms for every feed and for every medication on her phone).  When the alarm went off, Cassie rolled over as if to silence the alarm and ended up bumping Owen in the head.  Let me tell you he did not like that at all.  It took us twenty minutes to calm Owen down enough to finish feeding him.

So this afternoon we took delivery of our brand new rocker recliner chair from WG&R at 1:30pm.  It kind of dominates the room, but it is going to be really helpful with Owen for feeding and just for calming him down in general.  Bear also has a new favorite spot now.  We moved the green chair that he usually sat in and put this other chair, which he never really sat in, in front of his window.  I didn't manage to get a picture of it, but Bear will sit with his head on the back of the chair staring out the window.  We had a nice surprise this afternoon, my brother David and his wife Rebekah were in town and they were kind enough to take Bear along with them when they took their dog Yoshi to the dog park.

At 3:30pm this afternoon, we got our first visit from the Aurora Visiting Nurse Association (VNA).  Joy did a little assessment of Owen and just got to know us a little bit.  Joy is going to be Owen's case manager and will most likely be the nurse who comes to visit most often.  They are going to visiting at least once a week until Owen has his Glenn procedure.

Hello mommies! 3:36am May 18

Hello fellow moms (heart mommies and non heart mommies). I wanted to share a very valuable resource with you.  Today I recieved a heart mom care package from the non-profit group, Sisters by Heart.  They are based in California and was founded by a few mothers to kids with hypoplastic left heart. They offer support to moms/families with kids that have hlhs, hrhs, and single vents.  Anyways, one of the things they sent me was this really awesome planner, which I totally reccommend to any mom out there!  It is called a momagenda. They are available for purchase at WWW.momagenda.com. the version I was sent is the desktop edition and it has already come in handy for me.  So if you are looking for a planner to keep all your kids activities straight, get this one. You won't be sorry, and I am pretty sure you won't go back. ;)

Thursday, May 17, 2012

Appointments 9:11pm May 17th

So today was an appointment day.  Cassie had her six week checkup with Dr. Garvin-Cress.  The doctor said that Cassie's incision is looking really good.  She doesn't have a weight lifting restriction because her incision is healing so nicely.  Now Cassie is back to her yearly checkups with a gynocologist.  Owen also had his first appointment with a regular pediatrician Dr. Anne Baumgardt.  Dr. Baumgardt actually did her residency at Children's Hospital of Wisconsin.  Owen's appointment went quite well too.  We discovered that the pulse oxymeter that they have at the clinic isn't quite as nice as the one they have at the hospital when they tried to put it on his foot and it read 71.  When they tried again it wasn't registering anything.  Finally the nurse decided to just hold the sensor on his foot an then it was registering in the high 80's.  We are going to be having another appointment with Dr. Baumgardt in three weeks.  After we were done at the doctor's office, Cassie and I decided to check out WG&R for a rocker recliner.  When we were at the hospital, rocking Owen was a good way to get him to calm down and we realized that we don't currently have a rocking chair.  So we picked out a nice chair that has compartments in the arms and it also is heated and has a vibrator.  We were really lucky that they have one in stock and they are actually going to be delivering it tomorrow afternoon.

Wednesday, May 16, 2012

Home at last 10:00pm May 16th

Sorry we haven't updated the blog since Monday, as you guys know I had to go home Monday night so that I could work yesterday, and yesterday was a very busy day for Cassie.  So as those of you who have been faithfully following our blog on Monday Dr. Ghanayem told us that unless something happened, we would be able to bring Owen home on Thursday.  So naturally we started making plans for me to come down on Thursday which means that we would need someone to take care of Jason for the day and we would need someone to come down with me to drive back the other car so that we could ride in one car as a family.  So yesterday things were going as normal, nothing really exciting or troubling to report.  Then shortly after lunch, my cousin Jill came to visit Owen, the first time she has been to visit since Owen was getting his art line put in.  Then shortly after Jill left Dr. Russell came in the room and told us that if we could make it work, we would be able to take Owen home today!!  So naturally after Cassie informed of this new development, and we were able start making plans for who would watch Jason today (my Mom was able to watch Jason today because she finished classes last week and didn't really have anything else planned today), things got really exciting and busy at the hospital for Cassie.  People were in and out of the room all afternoon getting us prepared to take Owen home.  The one hurtle that we still had to get over was the car seat test which they ended up doing last night starting at 10:45pm, needless to say Owen did very well with his test (I think Cassie had Owen in the stroller the entire time).  So needless to say, yesterday was a very busy day for Cassie so she didn't really get any time to update the blog because she left the laptop at RMH and when she got back last night she had to start getting everything ready to go there too.

So this morning I dropped Bear off at Cassie's parents house and picked up Cassie's Mom so that she could help get everything loaded into the cars and drive Cassie's car home for us.  Cindy and I got to Children's Hospital just after 10am this morning.  When we got there Brittney, Owen's primary nurse was actually visiting with her daughter.  Brittney wanted to see Owen before he went home and it was her day off today.  We decided to wait to leave until after Owen's noon feed so that we didn't have to worry about stopping to feed Owen on our way home.  After Owen's feed we got everything packed up and were out of the hospital before 1pm.  After we got everything out of the hospital we went back to get our stuff out of the RMH and get checked out.  Before 1:30pm, we were already on our way home.  We got home just after 3:00pm.  After we got things kind of situated and started to settle in, I went to pick up Bear from Cassie's parent's house.  You should have seen how excited Bear was to see Cassie (he hasn't seen her for seven whole weeks).  For dinner tonight, my parents made us North African flank steak with tin foil potatoes, grilled asparagus, grilled sweet potatoes, and cheese cake.  So now Owen is just chilling in his Pack and Play and Cassie is trying to get some sleep because she is going to be getting up with Owen at 2am.  It feels great to finally have the whole family under one roof.

Monday, May 14, 2012

Beautiful day 4:43pm May 14th

So we just got back from taking Owen for a walk.  For the first half of the walk Brittney went with us and we took Owen outside of the hospital for the very first time.  After we got back into the hospital, we walked Owen around the floor a couple of times.  Yes, today Owen got to enjoy the beautiful weather outside of the hospital for the very first time.  He slept the entire time we were outside, but at least he was out of the hospital for a couple of minutes.  Hopefully the next time he is outside of the hospital it will be for a couple of weeks, and not just minutes.

Morning rounds 8:55am May 14th

So yesterday afternoon Grandma and Grandpa Krajnik made it down here to celebrate Mother's Day with us.  They got here around 5pm and stayed until after 10pm.  We took them out for a nice Mother's Day dinner at the Texas Roadhouse, the food was delicious.

This is what Owen looked like just before we weighed him this morning.  He clocked in at 4060 grams this morning.  Morning rounds time.  They actually rounded really early this morning.  Owen is looking really good right now.  Yesterday he took in 494ml of formula by mouth.  His BNP was 176, the lowest that we have seen it this morning when they did his blood work.  Dr. Ghanayem said that as long as he continues to do well there is no reason that she sees why we couldn't go home later this week.  She actually said possibly by Thursday.

Sunday, May 13, 2012

Morning rounds 11:32 May 13th

Owen did pretty well overnight with his feeds.  Overall yesterday he managed to take in 480ml of formula without his NG tube in which is really good, for maintenance he needs to take in 400ml because he weighs 4 kg.  This morning during rounds they decided they are going to go up on Owen's Captopril because his pressures have been higher.  Other than that Owen is doing great.  Labs will be drawn tomorrow morning so there wasn't really much to report.  Dr. Ghanayem did say that if he keeps on doing this well with his feeds we might start talking about going home.

Saturday, May 12, 2012

Visitors 9:32pm May 12th

So Owen has been doing pretty well so far today without his NG tube today.  Since we got here this morning Owen hasn't taken less than 50ml, his largest being 71ml.  We got some visitors today as well.  Nick and Angie Oskey, Cassie's cousin and her husband, came this afternoon and shortly after they got here one of Cassie's childhood friends, Lyla Goerl, got here.  Lyla has actually been hanging out with us most of the day now.  She even came back to RMH with us for dinner, they fried out hot dogs and brats.

Morning rounds 11:55am May 12th

So, apparently Cassie doesn't really like updating the blog very much.  I asked her to update the blog when I got to the hospital last night because there was some stuff that happened yesterday and it would be better if she updated it first hand instead of me doing it second hand, but she didn't so I will do my best.

So yesterday during rounds they decided to do an Echo to look at his heart.  They said that his heart was looking fine, although one of his valves might be a little leaky.  In the afternoon, Owen decided on his own that he didn't need his NG tube anymore and pulled it out.  Since the doctors were already talking about pulling his NG tube they just decided to leave it out and see how he does on his own again.  Since he pulled out his NG tube by himself he has for the most part been doing quite well with the feeds.

Now onto today.  This morning Owen weighed in at 4014 grams, which translates to 8lbs 13.3oz.  Before they got here for rounds this morning Cassie noticed that there were some sutures sticking out of Owen's incision.  She asked Dr. Ghanayem about it during rounds, and Dr. Ghanayem said that it wasn't anything to worry about.  Because he has been occasionally taking the full 65ml of formula during his feeds, they decided that they are going to go up to 70ml per feed and if he takes the whole bottle go up by 5ml for the next feed to see how he does.

Friday, May 11, 2012

Party in Owen's Crib May 11 9:56am

Sorry I didn't post yesterday, it's really hard to try to post a blog when it is just me here and Owen is wanting to constantly be held. Nothing major really happened yesterday.  At rounds they said his BNP is in a downward trend which is really good. They are also going to try pulling his NG tube this weekend(probably today, but we'll see after rounds) to see if that will make him eat better before we move forward with the Gtube.  They also increased his dose of Captapril to 1.5 on Wednesday night and he has been tolerating it just fine.  I guess they just needed to go up in baby steps with Owen.  Brittney said the night nurse said he was up all night last night.  This isn't the first time he has stayed up most of the night in his crib.  He is usually very content with laying or being propped up in the boppy in his crib.  He likes to watch the relaxation channel the hospital provides.

Owen has a new next door neighbor who must be just getting off her sedation meds because she is screaming up a storm.  Hopefully she stops screaming soon.

I also found out that the ICU's in the hospital are almost completely full when I was talking to Dr. Alaa, I told her Owen and I would volunteer to go home if they need the space. :) My friend Angie said Don't say that because they will bump you guys up to one of the other ICU's.   But I have already been told that Owen will not get bumped up because he has a shunt. The shunt babies always stay in the CICU.

Today being Friday, there is an attending shift change so Owen will have Dr. Ghanayem for the weekend and Dr. Russell starting Monday.  I'm glad he will have doctors that know him instead of one that he's never had before. Still hoping for his golden ticket home (and yes, when people ask me if I need anything around here, I say "a golden ticket home")  I have met a few other heart families at the RMH and also a girl from Two Rivers whose son was born with spina bifida!  It is such a small world. It's nice to have people to talk to when Kevin is gone.

I will try to update again after they round on Owen.

Wednesday, May 9, 2012

G-tube territory May 9 3:21pm

Hey everyone, sorry this took so long to post, but Owen didn't get rounded on until 1pm and then I was trying to keep Owen calm and I ran down to eat lunch.  Anyways, this morning I decided to sleep in since I knew Brittney was working today and since Kevin wasn't here practically poking me with a stick to get out of bed and to the hospital.  I figured I would sleep in since once we are home there won't be much sleep for me! When I got here, Owen's speech therapist was just leaving she said she fed him and that he took 48 cc's. Owen was also asleep so I let him lay in bed until he started fussing. 

Grandma and grandpa Klein came down today for a visit! They haven't been down here since the day Owen had his heart surgery because they were watching our dog, Bear and my dad was sick for a few weeks. So the docs came in to round when my parents were here, luckily I had just handed Owen to my mom. 

They were surprised to see that Owen only took in 54% of his feeds by mouth yesterday vs the 75% he was at the day before.  But I and some of the nurses are starting to realize that Owen has a pattern. He will feed really great for a few days and the he will start to get tired and his feeds will slow down and he will take less per feed.  Last time his bnp went way up because he was stressed out about the feeds. That being said, he is getting a gtube put in as soon as his bnp is in a more comfortable place. I would rather be sent home with a gtube in place so we can make sure he is getting the volumes he needs so his shunt doesn't fail and so we can give his meds through it when he refuses to take them by mouth.

I know a lot of you are worried about the gtube, but it is temporary and it really is not a bad thing, a lot of the heart kids have them and it actually makes life a lot easier for the heart parents because they don't have to worry about dehydration. Plus in Owen's case chicks dig scars. ;)

Owen has been smiling a lot more, mostly when he is falling asleep, but it keeps making my heart melt. I haven't been quick enough to catch a picture of it yet though.

Anyways, back to rounds, they are going to go up on his captapril again today and wait to see where his bnp is at tomorrow to determine when his gtube insertion will be.

Two of the picture I am posting were from our walk yesterday. I had to carry him around the floor for a whole yesterday, because he was not digging the stroller. I eventually got to put him in the stroller and then he had a mad look on his face.  Hah.

Tuesday, May 8, 2012

Today's update May 8 10:50am

Hello everyone!  So Kevin went back home last night, so it's just me and Owen until Friday.  As you all read in the previous post, they went up on Owen's dose of Captopril last night.  He actually did pretty well with it (even though I didn't notice a difference...but it could take a few doses to notice a difference).  Last night Owen and I snuggled a bit, and then I sat him up in the boppy for a bit, he really enjoyed that. Plus it was good practice for his neck muscles! He was sitting up in it for almost an hour before he got fussy. :)

I left the hospital around 11pmish to go back to the RMH and get some sleep.  This morning I got back here around 9 and the nurse was just getting ready to weigh and measure him! He is down a little bit from yesterday.  His weight is 8lbs 8oz. and his height is 22 and 3/4 inches! :) He also threw up after his bottle so I had to change his clothes.

Round time! They aren't changing anything at this time.  He just needs to work on his feeds. They did redose his clonodine, because he threw up shortly after getting his meds earlier. Other than that he is doing great.  Hopefully his feeds are what they want to see soon so we can come home and snuggle with Bear. Th picture in the carseat was from a few days ago when we went for a walk.


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