Monday, April 30, 2012

Fluke 7:59pm April 30th

I had a feeling that his 2pm feed wasn't going to be repeated.  Cassie and I went back to the Ronald McDonald house early so that we could be there for supper and we weren't here for his 5pm feed.  We just got back to the hospital because we were talking to some of the other parents with heart babies.  At 5pm he only took half of the bottle so the rest went down the NG tube.  Now it is time to feed him again.

Feeding 4:25pm April 30th

So the first time Owen fed after having the NG tube put back in he took the whole 60ml from the bottle.  I just don't understand it.  I don't expect him to keep that up either, but it was nice to see him take the whole bottle.

Back on the tube 11:50am April 30th

So speech couldn't get Owen to take any more milk through the bottle.  She tried to use a different nipple, but Owen was getting all gulpy because too much milk was coming out at once.  So now they are putting his NG back in so that he can get the rest of his feed.  The doctor is putting in the consult with general surgery so we can get the ball rolling on the G-tube.  If his feeding does pick back up with the NG tube in again, we can decide if we want to continue with it or not, but I am pretty sure he will need to have to the G-tube put in.

Morning rounds 10:48am April 30th

Rounds again.  So yesterday Owen didn't manage to make maintenance.  They are most likely going to be putting the NG tube back in later today to make sure that he gets adequate volume and nutrition.  We brought up getting the G-tube put in with the team.  They are going to be discussing the option later with some of the more senior doctors and then he will need a consult from general surgery and he will need an upper GI before they can even consider putting in the G-tube.  Speech is going to feed him now to see if there are any other things that can be done to coax him into taking larger volumes from the bottle.  So it looks like we are going to be here a few more days, hopefully it doesn't take too long to before they can put in the G-tube.  We are really getting tired of being in the hospital.

Sunday, April 29, 2012

Taking a break 4:25pm April 29th

So this afternoon Cassie and I were just getting too stressed at the hospital so we decided to take a little break and go see a movie.  We ended up seeing the new American Pie movie American Reunion.  The movie was really funny, and it was a relief to do something normal for a change.  Now we are back at the hospital and while we were gone Brittany gave Owen a bath and took him for a long stroller ride.  He stayed awake the whole time we were gone, so now he is pretty tuckered out and is sleeping.  Owen has still been pretty poky with his feeds not even taking in 45ml a feed, so we are kind of worried that he won't even reach his maintenance goal today.  Cassie and I have been toying with the idea of asking the doctors about putting in a G-tube which actually goes right into the stomach through the abdominal wall.  We don't really want him to have a G-tube, but then we won't have to be stressing out that Owen isn't getting an adequate volume of milk.  We will have to wait until morning rounds to discuss it with his team of doctors, but we are pretty sure that we are going to ask them to just go ahead and put the G-tube in.

Morning rounds 10:27am April 29th

Rounds time again.  Nothing has changed.  He barely gained weight again because he was just over maintenance again.  This morning he weighed in at 3726 grams.  Last night they were talking about possibly trying to go up on Captopril again because Owen's blood pressure was a little high. Thankfully they decided not to change his Captopril again.  The doctors are also concerned because Owen hasn't really been gaining significant amounts of weight, so we are very sad to say that we most likely will not be coming home tomorrow.  They pulled up a chart of his growth and his line has pretty much been straight the past few days instead of what they want to see, diagonal.

Saturday, April 28, 2012

Visitors 8:52pm April 28th

Owen has been doing much better today on his feeds.  At two of his feeds, he took the full 60ml bottle of fortified breast milk.  Apparently all he needed was a little change in his milk to take in a larger volume.  This afternoon Aunt Kelly and Uncle Andrew Krajnik (my brother and his wife) came to visit for a while.  They dropped their twin two year olds off at Aunt Theresa and Uncle Dave's house (my aunt and uncle) because they wouldn't be allowed to visit Owen anyway.  Earlier this evening one of my college friends, Brittany Hauser, stopped by the hospital to visit for a few minutes.

It worked 12:45pm April 28th

So, Owen had his first feed with the changed fortification.  It seems to have worked because he took the entire bottle this time.  Hopefully that wasn't just a fluke and he will start taking full bottles for every feed.  Why didn't we think of this sooner.  It is such a simple fix.

Morning rounds 10:52am 28th

Time for rounds again.  They were really focusing on his feeds.  So this is what they decided, they want us to try to keep him to every 3 hours for his feeds unless he starts getting really agitated before it is time for his feed.  They are hoping that by waiting he will take in larger volumes per feed.  They also decided to try him on the 24kCal (the amount that they fortify it) instead of the 27kCal that he has been getting.  The more highly fortified milk is a lot thicker and can be harder to get through the nipple and that could be contributing to the fact that he is always falling asleep while he is feeding.  Also the more highly fortified milk is a lot richer and he might just be getting satisfied before he is getting the volume he really needs.  Hopefully these changes will help him do better on his feeds, it has been getting very frustrating, especially considering that he had been doing so well earlier this week.

Morning 10:25am April 28th

Well yesterday Owen fell just short of his maintenance goal, but inexplicably his weight is up from yesterday, we weighed him at 3724 grams.  I don't really understand how after a day of amazing feeds and exceeding his weight gain goal for feeds he looses weight and on a day when he doesn't even reach his maintenance goal he gains weight.  So for the last couple of days Cassie has been saying that she things Owen's voice is getting stronger and louder, I on the other hand was hesitant to say that his voice is getting better.  Cassie was actually thinking of asking Brittney if we could get Dr. Robey in here to take a look at Owen again, but she didn't even need to ask, he just decided to visit this morning all on his own. He said that he thinks Owen's voice does sound stronger than it did the other day, but it still sounds pretty hoarse.  He wants to see Owen again in three or four weeks to assess Owen again, he isn't going to look at it now.  When we come in for an appointment he will decide then whether or not to scope out Owen's vocal cords again.  Maybe Owen will fall into that 20% where the paralyzed vocal cord actually comes back, or maybe he could just be compensating for the paralyzed cord better.  I guess we will have to wait and see.

Friday, April 27, 2012

Overnight 11:00pm April 27th

So all day Owen has been a pokey eater.  He hasn't even taken more than 50ml in a single feed all day long.  In the interest of keeping Owen's feeds more consistent, we decided that one of us is going to be staying at the hospital overnight until we go home.  Tonight that happens to be me.  Hopefully Owen will at least make maintenance today.  It is really frustrating, he had been doing so well with his feeds and then there was the hiccup with the meds yesterday and now he just isn't feeding like he was.  Hopefully he will pick up and this isn't going to be the norm now.

Frustration 10:39am April 27th

So we got to the hospital today after 10am.  Of course since they have been having staffing issues, we couldn't find Owen's nurse because she was in a different room.  Owen seemed like he might be hungry so I looked at his chart, and I really wasn't happy with what I saw for this morning.  The last time they had fed him was 8am and he took 30ml, that isn't too bad, but what pissed me off was that the time before that 7am, he only took 7ml.  He never only took 7ml when we are feeding him even when we first started feeding him with a bottle after they took out his breathing tube.  I feel like we are never going to get out of this hospital if Cassie and I aren't here all of the time to feed Owen because when we don't feed him everything seems to come apart.  Thankfully his weight was up this morning 3706g, don't ask me how he managed to gain weight yesterday when he barely even met his maintenance (maybe he just hasn't pooped in a while).  We ended up missing rounds because they moved him up in the schedule because of the issues he was having last night.  They aren't going to change anything.  They went back down on his Captopril and they aren't going to give him any diuretic.  I feel pretty bad because I was getting upset with Owen's nurse and his care partner, but I can't help getting upset that every time we leave things seem to go to crap.  Cassie and I are thinking of taking turns staying overnight because he does seem to do so much better when we are here.  It just gets so frustrating.  It is stressful being at the hospital all the time so I feel like just leaving sometimes, but then it is stressful being away from the hospital because it seems like anytime we leave for a few hours he isn't feeding well and we don't know how he is doing.  If they could just let us take him home and have that consistency, I feel like things would be so much better and he wouldn't have any issues.

Stressful Day 7:59am April 27th

Sorry for the lack of posts yesterday, it got really stressful at the hospital what with first finding out that we aren't going home today and then the complication with Owen's Captopril.  So, with the oxygen, Owen's stats came back up just fine and his blood oxygenation was sitting in the 80's again.  Just before we left the hospital around 9 last night (we just couldn't sit at the hospital anymore) Owen's nurse took him off of the oxygen and his stats didn't fall again, so the Captopril must have already been working its way out of his system.  Cassie and I decided to go to Dave and Busters for a change of scenery (we have been either at the hospital or at the Ronald McDonald house and we pretty much just sit around at both places) and to kill some time before going back to the Ronald McDonald house.  When we got back to the Ronald McDonald house, Cassie called for an update and Owen was doing fine.  His blood pressure was coming back up and he was sleeping comfortably.  They didn't give him his nightly dose of Captopril to give it more time to work its way out of his system and they didn't have to put him back on the oxygen, thank God.  I hope they never decide to change his medications again like that, that was pretty scary.

Thursday, April 26, 2012

His new dose isn't agreeing with him 6:00pm April 26th

So earlier, a technician came in to give Owen an EKG.  It is pretty much the same as what he has on all the time with the electrodes on the chest, but they put on like 13 different electrodes to get even more views of the electrical signals coming off of the heart.

So Owen didn't get his new dose of Captopril until about 4pm because they didn't put in the new order right away this morning for the new dose.  After we fed him at 4:30ish his stats settled a little lower than normal and weren't rebounding.  Brittney even came in to ask if his stats had been lower since we fed him like she was a little concerned with his stats.  Cassie and I were starting to freak out a little bit so we put on the pulse ox that we are going to be bringing home wondering if the one on his foot wasn't working well.  It seemed like it because the portable one was reading around 80 when his other one was around 70.  Shortly after we took our pulse ox off of his foot he started alarming because his blood oxygenation was low so when Brittney came in we asked her to move the sensor.  After she moved the sensor, he started alarming again, so she called in the doctor and they checked his blood pressure which was low.  They were all worried about his blood pressure so they wanted us to give him some Pedialite and now he is on oxygen just to make sure his levels don't drop to low.  What happened is the Captopril is reducing the systemic resistance because too much blood tends to flow through the shunt, only now too much blood is flowing through his body and not enough is getting to his lungs.  So they are going to go back to the old dose of Captopril and are going to talk about putting Owen back on a diuretic to reduce the amount of fluid in his lungs.  This is exactly why they wanted us to stay in the hospital after changing his medication dose.  I hope we will still get out of here by Monday.

Sticking around a few more days 12:20pm April 26th

It has been a busy morning.  First of all he did really well yesterday on his feeds.  From 6am yesterday to 6am today, he took in a total of 512ml of fortified breast milk.  Surprisingly though he managed to loose weight, we only weighed him in at 3674 grams, down 26 grams for what we weighed him at yesterday.

OT stopped in this morning before rounds to assess him.  He is doing really well with his visual tracking and she just gave us a few exercises that we can do with Owen especially in the sideline position to promote the use of his arms and work more on his tracking.  While OT was assessing him, one of the nurse practitioners from the Interstage program came in to talk to us.  She gave us some consent forms to sign for research programs related to babies with congenital heart defects where they just use the data from the interstage program.  We have completed all that is required of us before discharge except the car seat test so far.  The Interstage nurse also gave us copies of his last echo and chest x-rays to keep in his Interstage binder so that we can give them to his cardiologist in the Fox Cities once we get that far.  We asked, and you have to have specific programs that they only have in hospitals (and not even all hospitals) to view the files, so sorry to those of you who thought it would be cool to look at Owen's echo of his heart, but it isn't going to happen (I know, I was disappointed by that too).

Now for the moment you have all been waiting for.  Today is that day that we should have gotten our official discharge date of tomorrow.  I say that we should have only because at rounds today they didn't give us the go ahead, they are going to be keeping him here a few more days.  Although Owen is technically doing great at this point, his blood pressures have been a little high lately.  They have been toying with the idea of increasing his dose of Captopril for a couple of days now because the dose he is on right now is lower than what they usually send kids home on.  They finally decided that it was a good idea to increase his Captopril and they don't want to go messing around with his medications and then just ship us home.  They want to have a few days of observation on the new medication to make sure that everything is stable and they have the desired affect.  So, we can't go home tomorrow, but they are hoping that we can go home Sunday or Monday.  We were so looking forward to going home tomorrow, but we totally understand that they want to observe him for a while at the new level of medications.  It would totally suck if they sent us home only to have us come back down next week to have him readmitted to the hospital because he isn't reacting well to the new dose.  I hope this time the discharge date will stay where it is, we are totally getting sick of sitting in the hospital all day every day, for a month, it gets really tiring.

Wednesday, April 25, 2012

One foot out the door! April 25 3:14pm

Well we are a few steps closer to going home.  The only thing holding us back is Owen proving that he is going to keep gaining weight and eating like a champ.  We met with one of the interstage nurses this afternoon.  Her name is Jena, and she wanted to touch base about what needs to be done and who needs to be met with yet before Owen is discharged. She set up appointments for Owen to have a hearing test and a newborn screen, as well as a meeting with a nutrition consultant who will show us how to mix up Owen's fortified breast milk.  They haven't said we are going home for sure on Friday, but we've heard that they almost never say when a patient is going to be discharged until it's absolutely definite.  With the heart kids, they can take a wrong turn really easily.  I am hoping that the mishap from last night doesn't affect him going home Friday.  It shouldn't because Owen has taken 3 60cc bottles already. We are also meeting with a pharmacist to go over Owen's med schedule and where they need to be stored.  Owen is also starting a daily Vitamin D dose today. Jena is also going to schedule an appointment with his pediatrician in Manitowoc for sometime next week.

Today we put Owen in his first onesie that doesn't snap all the way up the front.  It only snaps around the crotch and the back of the neck.  I think he has some more growing to do because it's awfully big on him.

We went to lunch today in the Froedart cafeteria with Angie, Jason, and their daughter Cheyanne.  The food was pretty good compared to Children's Hospital.  The food at Children's tastes kind hospitally.

Owen had his hearing appointment already today and he passed! :) Here is a picture of how they do hearing screen on babies. It looks like he is rocking out.

And here's another cute one for the road. 

Morning rounds 10:45am April 25th

Time for rounds.  Everyone is quite impressed with how Owen has been doing.  Yesterday according to their records Owen took in 457ml of milk orally.  Cassie and I were slightly worried that his oxygen saturation as been lower since he is off of the oxygen, but the doctors aren't worried at this point because they are still in a good healthy range.  Owen had a little bit of fluid in his lungs on the x-ray they took on Monday, so depending on how his lungs look tomorrow when they x-ray him again, they might have to give him some more diaretics to drain off the excess, which would mean that he will have to take in more fluids just to maintain weight.  They still aren't giving us an official discharge date yet, but Friday is looking pretty good as things currently stand.

With that being said, I will leave you with this.

Follow directions please 9:47am April 25th

So Cassie and I are kind of ticked right now.  So when we got here we had to track down Owen's nurse (that isn't really anything new as things have been going lately).  We wanted to get the volumes that he took in last night and this morning after we left so we can continue keeping an accurate record.  Before we left last night, we told his nurse that he was getting hungry about every two hours yesterday and that she should plan on feeding him every two hours.  When we look at his chart, the last time we fed him was just after 10pm and the next time his nurse fed him was 1am and then like 4:30am.  His last feed before we got here was 8:30am just before we got to the hospital.  I think his nurse was waiting until he was making noise to come in to give him feeds, but after he gets upset he usually doesn't take as much when he is getting upset.  And Owen usually only takes so much when he feeds so waiting longer to feed him isn't really going to help him take in a larger volume at once.  So long story short he has only taken 115ml so far since midnight and at this time yesterday he was already at 184ml, he is almost a full 70ml behind so far today.  We weighed Owen this morning at 3700 grams, just 4 grams up from yesterday.  I hope his nurse not listening to us overnight doesn't set him back and ultimately keep him in the hospital longer.  The one thing at this point that could keep Owen in the hospital is not taking adequate volume and failing to gain weight.

We were talking to the speech therapist about it and she was kind of upset that they weren't feeding Owen at least every three hours.  In his notes it says ad lib for Owen, but they still want him to eat at least every three hours.  So now she is making sure that they change his feeding order to say ad lib but make sure he isn't going longer than three hours between feeds.  Now we are probably going to have to work hard all day to make sure that he reaches his goal for feeds.

The discharge nurse stopped in to talk to us.  We have pretty much done everything that we need to do before we can take Owen home, the only thing that still needs to be done is the car seat test which can't be done more than 48 hours before discharge.  She was also talking to us about the Birth to Three program that will help provide OT/PT and Speech therapies to Owen once we get him home.  In Manitowoc County the Birth to Three program is going to be through the Visiting Nurses Association from Aurora because Owen has United Healthcare HMO and they go through Aurora in or area.  They wanted to check out the Birth to Three right away so that there isn't a significant lapse in care when we go home.  She said it would take maybe two weeks before someone comes out to our house which is acceptable because they will be giving us exercises to do with Owen before we go home.

I think the next couple of days are going to get really busy trying to get everything ready to go home.  We are going to be meeting with a lot of different people.

Tuesday, April 24, 2012

Can't wait to go home! April 24th 11:13pm

Hey everyone, Cassie here.  We stayed at the hospital until around 5:45pm today.  We went to the Ronald Mcdonald house to grab some dinner and shower (since we were at the hospital since the morning before).  We sat with our friend's Angie and Jason and their 5/6 year old daughter, Cheyanne.  I have to say, Cheyanne is super cute.  Kevin sat with them last night when he ran back to RMH for dinner and she told him she was going shopping for new shoes after dinner.  So tonight when she saw him, she had so show off her new kicks. :) Cheyanne will talk to just about everyone!  Angie and Jason also have a 3 year old daughter, Shelbie, who is also in the CICU as well.  Her room is about 4 doors down from Owen's.  Shelbie had a heart transplant the day before Owen had his open heart surgery.

Owen also got to meet a friend earlier today! Our friend Angela was taking her son, Drew, out for a stroll in the stroller, so we brought Owen out in the hallway to meet him.  Drew is 2 and a half months old and has hypoplastic left heart.  Angela and her husband, Curtis, are actually from Green Bay! So we are definitely going to try to get the boys together while they are growing up. It will be awesome for Owen to have a friend with similar issues.

When we got back from the RMH, we found Owen in his crib snuggling with the Oscar the Grouch stuffed animal we bought with some gift money our friend, David, gave to Owen when him and his mom, Becky visited for a little while.  Here are some pictures. :)

We ended up leaving the hospital shortly after 10pm tonight.  Before we left I added up what Owen's intake was so far today, and his minimum feeding goal for maintenance(where he takes in enough fluids to be healthily hydrated) is 370 cc's, Owen was up to 368 cc's so far!  His total daily goal they are shooting for is 494 cc's.  He has until 6 am to keep eating like a champ! I love coming in and looking at his chart to see what his intakes were when we were gone.  It's a feeling similar to Christmas eve. :)  

That's all I have for now, I can't wait to get a good night's sleep tonight. The pullout couch they have in Owen's room was super uncomfortable.  But most of all, I can't wait to go home and sleep in my own bed! 

Morning rounds 11:20am April 24th

Time for rounds.  The renal ultrasound that they took yesterday looked good.  They were all really impressed with how well Owen ate yesterday.  The grand total for his intake was over 500ml when his goal was 480ml and 467ml of that was taken orally.  For today his maintenance goal is 370ml because his weight this morning was 3696 grams (8lbs 2.1oz).  As long as he can continue to gain weight over the next couple of days he should be able to be discharged on Friday.  We asked about circumcision today and he won't get circumcised until after the Glenn procedure.  For his circumcision, he will have to see urology because Owen has hypospadias which is when the urethra doesn't come out of the tip of the penis, but actually comes out more on the bottom.  Cassie was concerned about genetic testing on Owen and they did do some testing and everything looked good.  They are probably going to be increasing Owen's dose of Captopril tomorrow if he continues to do well with his feeding because they want to send him home on a higher dose and want a few days of observation at the higher dose before he goes home.

Morning 8:19am April 24th

We are almost done with our 24 hour cares.  Owen has been a champ.  He has been eating about every two hours all night long and taking over 40ml each time.  Owen easily reached 75% of his goal volume and actually almost reached his total goal volume of fortified milk.  PT is here right now working with Owen.  I think Cassie and I were slacking with the exercises they gave us yesterday and Owen spent most of the night looking to his right instead of to his left.

Monday, April 23, 2012

Doing fine 9:14pm April 23rd

So earlier this afternoon PT/OT stopped by again.  We were kind of concerned because Owen has really been pulling towards the right again.  The therapist showed us some techniques that we can use to help loosen up his muscles and help coax his head to the left.

So today we decided to do our 24 hour care because they took out Owen's NG tube.  Because they have his NG tube out, they have decided that Owen can eat whenever and how much he wants to, and boy has he wanted to.  Owen has been getting hungry every hour and a half to two hours today and the least amount of milk that he took was 30ml with the largest being 57ml.  I don't think Owen is going to have any trouble meeting his goal for the day, and I am pretty sure that he is just going to fly right by it.  So far the 24 hour care has been going great.  Before we took Owen for a walk this evening, I decided to make sure the straps in his infant carrier were properly fitted so that we could actually buckle him in this time.  We were actually toying with the idea of doing Owen's car seat test (he will have to be able to sit in his car seat for at least 90 minutes before we are allowed to go home), but the car seat test has to be completed within 48 hours of discharge and since we don't have an official discharge date yet, it would be kind of pointless to do it now.

Morning rounds 11:18am April 23rd

We have had a busy morning so far.  First speech was here when we were giving him his morning feed, they came in to do a chest x-ray, and then the social worker was in here just as they were coming in for rounds.  They gave us permission to take Owen off of the oxygen now that his NG tube is out, so finally we can see his face without anything on it.  Apparently they already did his renal ultrasound before we got here this morning, but they don't have results from that yet.  If Owen can prove that he can gain weight for the next couple of days we should be out of here by the end of the week.  They aren't going to be doing another echo cardiogram tomorrow because the one that they did on the 8th was very comprehensive and the cardiologist doesn't feel that another one is necessary.
The only wires and cords that we have to worry about now are his electrodes that monitor his heart and his breathing, the pulse ox on his foot, and the renal patch on his back.  We won't actually get a wireless baby until he gets discharged and we go home.

NG out 9:27am April 23rd

 So this is what we saw when we walked into Owen's room.  So Owen's nurse today (it is a male nurse) said that the doctors decided to pull his NG tube today.  He didn't actually reach his goal of 75% of his goal, he only got 71%, but they decided it should come out anyway.  They are switching him from every three hours for feeds to when he is hungry although we aren't supposed to let him go more than three hours between feeds.  They are just leaving the oxygen on for his first feed (the doctors didn't really say anything about his oxygen to Owen's nurse this morning).  His weight this morning was 3684 grams, which works out to 8lbs 1.67oz.

Sunday, April 22, 2012

Puke 10:10pm April 22nd

So Owen puked for the first time tonight after his 9pm feeding (OK his feeding was a little late because Cassie and I were doing some of our training).  He was having some issues taking his bottle I think because he was too enthusiastic because it was a little late.  He wasn't drinking it very well and only managed to take 32ml.  Then I tried to give him his meds orally and he was having none of that, so those had to go down his NG tube.  We had just finished giving him the rest of his milk and I had him sitting up and he puked on me.  We were worried that he had just gotten his meds so we called his nurse in the room and she had to call around to ask if he should get his meds again.  Because it was so close to when we gave him his meds we had to give them to him again.  At this point I really wish I had remembered to bring another shirt this morning (I thought we learned that lesson yesterday that we should always have extra shirts in case he has a blowout or something, apparently we just needed a real accident).

Training day 8:15pm April 22nd

This afternoon one of our friends, Molly Simac, came to the hospital to visit for a few hours.  It was nice to hang out and talk for a while, and she was really excited that she got to hold Owen for a while.

So earlier today Owen's nurse brought in a CPR video on VHS for Cassie and me to watch.  Before we go home we have to go through some baby CPR training.  So we just watched the video a little while ago.  The video goes over the ABC's of CPR and then it goes over what to do if the baby is chocking.  Now Owen's nurse is going to find the baby CPR training mannequin so that we can both demonstrate that we understand CPR and how to clear the airway.  His nurse is also getting a bunch of syringes so that she can teach us how to draw up medications into a syringe (we are going to be practicing with water, not medications).  Cassie and I are planning on doing our 24 hour care tomorrow into Tuesday in anticipation that Owen will get his NG tube out tomorrow (he has been doing really well with his feedings today his best being 55ml).  Tomorrow morning they are going to do a kidney ultrasound on Owen because he had hydronephritis or excess fluid in his kidneys when he was born and they want to make sure that is all cleared up which it probably should be given the amount that he pees.  On Tuesday they are going to be doing another echo cardiogram to assess how their work on Owen's heart is holding up.  His nurse earlier today said that if all goes well with those tests and he does get his NG tube out tomorrow, we might actually be able to go home as soon as Wednesday.

I have a tasty hand! 1:55pm April 22nd

Owen discovered that he can put his hand in his mouth and has been doing it for about 15 minutes.  Thought I would share some pictures with you all! :)

Morning rounds 10:36am April 22nd

They just came for rounds.  He is still doing well.  Yesterday he scraped by at 62% of his goal orally.  As long as he can reach 75% or better they will pull his NG tube tomorrow.

Getting bigger 10:17am April 22nd

So even though Owen's primary nurse is on the floor today, we have a different nurse.  The baby that Owen has been pared with had a bad day yesterday and now Owen is pared with a different kid on the floor whose primary was in today and Brittney decided to take the girl next door because none of the other nurses on the floor know her.  This morning Owen weighed in at 3664 grams, up 16 grams from yesterday morning.  In the English system, that comes out to approximately 8lbs 1oz.  Last night they actually suspended his multivitamin for this morning because that really threw him off for his feeds.  Now we just have to work up on his feeds.  Although he didn't do very well when we were here yesterday he might have actually taken 70% again because he did pretty well with his feeds overnight.  We are off to a good start today as well, he took 46ml which is about 77% for that one feed.  If he keeps that up today they will probably be pulling out his NG tube in the morning tomorrow.  Here is hoping.

Saturday, April 21, 2012

Visitors 10:40pm April 21st

So Grandma and Grandpa Krajnik came to visit today.  They got here around 3:30pm just after we finished feeding Owen and stayed until nearly 10pm.  Grandma and Grandpa both got to hold Owen for a while and Grandma even got to feed him at 6pm.  They took us out to Cafe Hollander in Tosa village for supper.  It was delicious, but I was a little disappointed by their gluten free burgers that Grandma and Grandpa ordered because they come without buns.  After we got back to the hospital and fed Owen again, they got to take Owen for a little walk with us, but then it was time for them to get home.  Of course Grandpa had to bring his camera, so here are the pictures that he took.

 Our first family pictures.  There is still someone missing from this picture.  I so wish that Bear could be down here with us, but I think he is having a good time at Grandma and Grandpa Klein's house (as long as Silver isn't being a little scaredy cat and constantly hissing at him).

Instincts 11:38am April 21st

So apparently Owen is starting to get hungry again, and it seems he knows where his food comes from.  Cassie was holding him and around 11am he started nosing around her breast.  He even tried sucking on it too.  Now just a little while ago Cassie was changing his diaper, and as soon as she got his diaper open he started to pee again.  It was hilarious.

Morning rounds 10:30am April 21st

Time for morning rounds.  Yesterday he took in exactly 70% of his goal orally.  The doctor said that she wants to see Owen reach maintenance 75% of his goal orally before they will pull his NG tube.  If he reaches that today, they will be taking out his NG tube tomorrow, but with the start that he has had he will have to have some really good feeds later today.  We asked the doctor if it was OK if we took Owen off the floor when we go for a walk and she said that it would be fine as long as he is hooked up and we should take a nurse with us.  One step closer to going home.

The lessons we learn 9:51am April 21st

This is what we arrived to at the hospital.  Isn't he so adorable?

How quickly it can change.

I don't know what we were thinking, but we found out the hard way that it is definitely not a good idea to give a baby medications orally before you give him his food, especially when those medications don't taste good at all.  So yesterday they started Owen on medication schedule that actually makes sense for when we take him home.  So now at 9am there are four different medications that he gets: Ranitidine, an antacid; Digoxin, a heart medication that helps it beat stronger; a quarter tablet of Asprin; and a multivitamin with iron in it.  For whatever reason, we decided to give Owen his medications before we gave him his 9am feed.  As far as I can tell, the Ranitidine, Digoxin, and Asprin don't really taste like much, and for the most part he took those just fine, but the multivitamin on the other hand has a very strong odor, and if that is any indication, tastes horrible.  So now he has this horrible taste in his mouth, and Owen was not happy and had absolutely no interest in taking his bottle.  So I was rocking him to get him to calm down enough so that he would take his bottle (we really want him to take as much orally as he can so that we can get out of here as soon as possible) and then Owen has a major blowout.  Luckily I was standing while I was rocking him otherwise he would have gotten me through the blanket he was wrapped in.  I think we will have to start bringing extra shirts and stuff to the hospital so that we are prepared if he continues to have major blowouts.  At least while we were getting him all cleaned up we got to try out the scale that we will be bringing home with us.  We weighed him at 3648g, which for those of you who don't speak metric is just slightly over 8lbs.  So finally, after we got him changed and settled down Cassie finally got to give him his bottle.  And wouldn't you know it he quickly fell asleep.  After all of that, he only took 19ml from the bottle.  Next time we know, when his medications fall at a time that he gets a feed, give him the bottle first, then give him his meds.  There are so many little lessons that you have to learn when you are a parent.  Well, two down and I don't know how many more to go.

Friday, April 20, 2012

Walks are fun 8:29pm April 20th

Yeah, so after his 6pm feed we were just talking with Owen's nurse and the possibility of taking Owen for a walk came up.  Of course we can't pass that up, and since I had just picked up the infant carrier and stroller earlier this week, all we had to do was run out to the car and bring them in.  So after we went out to eat at Buffalo Wild Wings (we were going to go to the Ronald McDonald house but they had already packed up the food by the time we got over there), we brought in the stroller and infant carrier so that we could take Owen for a walk.  So now we are back in Owen's room no worse for the wear.  He actually seemed to enjoy the walk, he only fussed a little bit a few times and his stats stayed strong the entire time we were out for the walk.  He actually managed to stay awake for the entire walk too.  Everyone around the floor had to come look at Owen as we went by.  I can't believe we didn't ask about taking him for a walk sooner.  There is even a possibility of taking Owen out of CICU (probably as long as there is a nurse with us) when we go for a walk.  I guess it really pays to ask what we are and aren't allowed to do.

Going for a walk 8:04pm April 20th

So we were chatting with Owen's nurse earlier, and the subject of taking Owen for a walk in his stroller came up.  Apparently there are a lot of things they don't tell you that you are allowed to do when the kids are in the CICU unless you ask.  We are actually allowed to take Owen for a walk, they just have a portable pulse ox and oxygen that we have to take with us, so we are going right now.

Incision 12:30pm April 20th

The doctor from the surgical team stopped in to look at Owen's incision where the skin is slightly separated.  He said that right now it looks just fine and isn't anything to worry about.  If it starts to get red and irritated or starts to drain they will have to take a look at it again.  It might take a little longer to heal and he will have a bigger scar, but it shouldn't give us any issues.  We should make sure that we gently wash it though when we give him a bath.  Now it is time to get some food for Mommy and Daddy now that Owen is all fed (they provided food for us in the parent's lounge today).

Morning rounds 12:13pm April 20th

The nurse practitioners for the interstage program stopped by to train us on the scale and pulse ox.  We didn't really learn anything new that they didn't show us when they were delivered, but for weighing him, we should try to do it at the same time every day and for his pulse ox, we should try to take it in the same state every day.  OT/PT stopped by to work with him some more, and the therapist was showing us some stretches that we can work on with Owen to get him turning his head to the left which he has actually been doing a lot better on but he still prefers the right.  She was also talking about working on his abdominal muscles and getting him to bring his legs up to his belly.

Them came around for rounds.  Again, not much significant has happened lately.  They are a little concerned that he isn't really gaining weight so they are going to be fortifying his milk even more so that he gets more calories.  When we were giving him a bath we noticed that there was some separation of the skin on his incision so we asked about that and they are going to have one of the surgical team come and take a look at it.  Owen has been pretty popular with everyone in the room at almost the same time, but it has been pretty relaxed.

Now Cassie is giving him his noon feed.  He just took 42ml from the bottle, nearly 75% for that one feed. Hopefully he breaks 75% overall today.

Real bath 10:32am April 20th

Owen has been doing really well with his feeds.  There was only one feed overnight where he wasn't really waking up and he only took 10ml of his feed.  But overall, yesterday he took nearly 60% of his goal from the bottle.  Talking to speech this morning when he managed to take 47ml from the bottle, that they like the cardio babies to take at least 75% of their goal before they will consider taking out the NG tube because 75% of their goal is maintenance meaning that take in only 75% they won't be loosing weight.  Hopefully he can reach 75% today so that they can take out his NG tube tomorrow or Sunday and once they get the NG tube out, they will take him off of the oxygen as well.

Because he doesn't have any more lines or anything, his nurse decided that we could try giving Owen a real bath this morning.  Owen wasn't exactly happy to be sitting in a tub of water, but he was finally patch and electrode free for the first time since after they brought him to see Cassie in the OR after the c-section.
 Naked baby time.

All clean now.  Look at how cute he is in the outfit that we picked up for him last night.  I had to run and put his other clothes in the wash, so hopefully he doesn't have any blowouts before his other clothes are clean.

Thursday, April 19, 2012

Doing more and more 10:56pm April 19th

Cassie and I just got back to the Ronald McDonald house from the hospital.  Cassie and I decided to go out tonight and use one of the gift cards that we got from people so we went to Applebee's.  Cassie was also worried that Owen was going to run out of clean clothes that would work with his wires, so when we were close, we stopped at Baby Gap and got him another outfit.  Owen has been doing really well with his feedings today, his most notable being his 9pm feeding where he took 51ml of a goal of 60ml.  Shortly before we were ready to leave, it was time to give Owen his Clonidine, and she asked us if we wanted to try giving it to him.  Of course, we want to do as much for Owen as we can ourselves and we are going to have to do that for him when we take him home.

Visitors 2:28pm April 19th

Cassie and I just got back from lunch.  Aunty Marge, Cousin Brandon, and Great-grandma Mattfield stopped by to visit Owen and got to see him taking a bottle. After they got to hold Owen they took us out to eat at The Chancery in down town Tosa.  The food was delicious and it is somewhere that Cassie and I have never eaten before.  Owen is sleeping right now, but it is almost time for him to eat again.

Morning rounds 11:22am April 19th

Rounds time.  So for the most part nothing significant has changed.  They are going to start him on a multivitamin just to make sure he is getting proper nutrition (babies don't usually get enough Vitamin D).  They are also talking about starting him on a medication that they send all babies home with from the CICU.  Yesterday he took in about 47% of his food orally but he fell short of his goal intake because they had to suspend his feed for the ENT to scope him out.  They are talking about possibly taking out his NG tube provided that he continues working up on his feeds.  I think they want babies to take about 75% of their goal orally before they will take out an NG tube.  Provided that he does well with his feeds and can gain some weight, his tentative discharge will be at the end of next week.  We couldn't be more excited that they are actually talking about discharge at this point.  They usually don't say that kind of stuff out loud for fear that things will start to go down hill, but Owen has been doing really well.

Recognition 9:51am April 19th

When we got to the hospital this morning, speech was just finishing up feeding Owen his 9am bottle.  He managed to take 32ml out of 60ml, not too bad.  What they are looking at the percentage of his total daily goal, not how much he takes in for every feed.  That makes me fell a little better because he has been a little sporadic on how much he actually takes in on every feed.  Brittney had to change all of Owen's bedding this morning because he peed the bed when she was changing him, but he managed not to get his clothes, go figure.  When we were walking into the hospital we ran into Dr. Saudek, the cardiologist who diagnosed Owen's tricuspid atresia.  He actually recognized us and said that he was out of town for a few days.  He said that he will probably be stopping up later today.  It was really nice running into him and having him recognize us.

Wednesday, April 18, 2012

10:36pm April 18th

We just got back to the Ronald McDonald house.  Owen is still doing great.  He seems to have slowed down slightly with the feeds.  As speech predicted, I think Owen is starting to get a little tired while he is feeding.  In his last two feeding his took 28ml and then only 20ml.  At his last feed, he was getting kind of fussy, and even though he was still awake, he had reached his 15 minutes of feeding time.  I got to try my hand at feeding him in the sideline position this afternoon as well.  Hopefully he can start taking all of his goal pretty soon so that we can go home, the hospital routine is really starting to wear on us.

Bouncy chair 3:35pm April 18th

Owen was sleeping in Cassie's arms, and the position that he was in was just the cutest.
 We decided to put Owen in the bouncy chair to see how he liked it.  I think he was a little unsure of the chair, but he didn't seem to hate it.

Food time 2:13pm April 18th

Cassie just finished giving Owen his bottle.  They suspended his noon feed because the ENT was going to be coming and they didn't want Owen to puke or be feeding when the doctor got here.  He was still getting kinda sleepy while sucking on the bottle, I think Cassie had to wake him up a few times, but he still managed to get 34ml in 15 minutes.  Not too shabby.

ENT visit 1:11pm April 18th

They are bringing the scope in right now to look in Owen's throat.  The Doctor will be over shortly.

The Doctor got here and he scoped out Owen's vocal cords.  He does have paralysis on his left side and he doesn't quite get full closure.  This means that when we are feeding him we should put him on his right side so that gravity can pull his paralyzed cord down to get better closure.  Speech had already suggested that we feed him on his right because he did start to cough when he was on his back.  The doctor also looked at Owen's tongue and he is slightly tongue tied, but it isn't significant so he won't do anything to it right now.  That is something that can be snipped at any time and if it isn't giving him issues now it might only give him problems making some speech sounds later on.  As far as his vocal paralysis, there is about a 20% recovery rate in kids.  There are a couple of reasons as to why it would be paralyzed, they might have stretched the nerve, irritated it, or possibly even severed it because the nerve for his vocal chord is right by the aortic arch.  If Owen's voice gets any stronger, they will reassess him, but there is a really good chance that Owen will be able to compensate for the paralysis if it doesn't get any better.

OT/PT stopped by again.  His preference for his right side might actually be related to his vocal cord paralysis.  Owen really wasn't willing to turn to his left yesterday while she was working with him.  She tried to loosen up his muscles, but she ended up starting at his pelvis and slowly working her way up his back.  She eventually got him to turn his head to the left.  She wants us to put him in his crib with his head to the left so that he it loosens up his muscles and eventually he might be willing to go to the left all by himself.  Because he has been in a bed for so long, they are also slightly worried that his abdominal muscles might be weaker that they should be so we are supposed to try to pull and tip his pelvis when we are changing his diapers, not pick him up by his legs.  She also asked one of the surgeons if we could experiment with tummy time, but they want to hold off on that for a while yet.

Medical supplies 11:18am April 18th

When they came around for morning rounds, there weren't really any changes.  Owen's medications are staying the same and we are just going to continue working him up on his feeds.  They delivered out pulse ox and our baby scale.  They showed us how to use both of them, so technically we have all we need to go home, now we just have to wait for Owen to be ready.  Hurry up Owen, we want to go home already.

Sleepy Owen 9:39am April 18th

Cassie and I tried our hardest to get to the hospital before 9am so that we could help with Owen's morning feeding, but the valet people had a different idea.  They have been parking up this little bend full of cars and they were trying to rearrange them as we were pulling up, so we had to wait for them to get things figured out before we could get to the parking structure to park our car and go into the hospital.  When we get up to Owen's room, the speech pathologist was in his room giving him his bottle.  This morning they took away his feeding restriction and are letting Owen take as much as he is going to take in 15 minutes.  This morning, he was kind of sleepy and wasn't feeding very well but he still managed to take nearly half of his goal.

Tuesday, April 17, 2012

Movin on up 3:27pm April 17th

So Cassie just gave Owen his 3pm feed.  This time he took a whole 37ml, awesome.  Speech came back in after Cassie was done feeding him and said that for tonight they are going to hold Owen to 30ml just to make sure that he doesn't get too tired out.  Some babies start out feeding really well, and then after two days kind of hit a wall because they use up all of their reserve energy feeding.  Owen doesn't seem to be working too hard to bottle feed, but we just want to be cautious.  Tomorrow morning they are going to see how much he will take again.

For the Interstage program, we should be getting out pulse ox and scale sometime tomorrow and they will be training us on how to use them.  When we are getting ready to take Owen home, there are two tests that we are going to have to do.  The first is to make sure that Owen can tolerate sitting in the car seat for at least two hours.  Cassie and I are also going to have to do a 24 hour care of Owen where we do everything for him.  They especially want to make sure that we are good overnight.  When we get Owen home, we are going to have to keep track of all of Owen's feeds and we are going to weigh him and take his pulse ox everyday.  They have a list of criteria for his stats that if he doesn't meet we are supposed to page the nurse practitioner and they will call us immediately.  We are also going to have bi-weekly cardiologist visits (we might be alternating between here and the Fox Cities for these) and they will be calling us periodically to get updates on his stats.

No more Pick!! 1:44pm April 17

Owen's primary nurse, Brittany, just pulled out his pick line!! He is completely iv free now. :) He has the 5 point heart monitor lines, his renal patch, and his oxygen canula (which is only a 1/4 of a L).  We can now pick him up out of bed whenever we feel like it and won't need the nurses help anymore. Kevin just ran to the car to get the bouncy seat that we are borrowing from Auntie Kelly and Uncle Andrew and we're going to see how Owen likes that later this afternoon.

When we got back from lunch a little while ago, we were surprised by a visit from the discharge nurse! He's not getting discharged yet, but soon!  She came in to tell us that she ordered the scale and pulse ox that we will be renting for at home and they should be delivered tomorrow.  They want us to practice at the hospital using the actual equipment we will be using home.  She didn't give us a date yet, but this a huge step in the right direction!

PT is here and is working on Owen's muscles and we are meeting with Jenna from the Interchange program right now so we will update more later!

ENT nurse 12:38pm April 17th

A nurse practitioner for the ENT stopped in to take a look in Owen's ears, nose, and throat.  The doctor is at a different location so he wont be able to scope Owen today, but he wants to tomorrow.  The nurse said that everything looks good, the only thing she noted is that he is slightly tongue tied, which means the tissue that connects the tongue to the floor of the mouth extends further towards the tip of the tongue than normal.  Being tongue tied can affect breast feeding and speech development, so the nurse is going to inform the doctor and then he will decide if he wants to do anything about it yet or not.  Other than that Owen is looking good.

Busy Morning! 11:09am April 17

Good morning, Cassie again! So far it's been a busy morning.  I ended up sleeping like a rock last night and slept right through the alarm I set to get up and pump.  I ended up pumping 10 ounces this morning as a result!

Anyways, when I got to the hospital around 9:15, Owen's speech therapist, Amy, was in here giving him his 9am feed by bottle.  He took 27 mL! That's about 50% of the bottle! Amy said that's a really good start and that most babies start at only taking in 10%.  Owen sure is living up to his rockstar title around here.

After they finished feeding him the rest via his ng tube, I got to give him a bath pretty much by myself.  He was EXTREMELY fussy until I was finished with his bath and then he was content.  I think his outfit makes him look like a cowboy today.

Kevin arrived back from his excursion home just as Owen fell asleep in my arms this morning. Owen should be having a meeting with PT/OT again this morning/early afternoon.  

We just finished up with rounds (that's why it took so long to write this post!) and they are making some BIG changes today for Owen! :)  They just stopped his antibiotics and took out his iv tree and are planning to take out his pick line today!! He is also getting upgraded to a crib. The ENT(ear, nose, and throat doctor) should be coming sometime today to analyze his vocal folds. Dr. Hehir also discussed the Interstage program with us today. 

The Interstage program is how they monitor cardiac babies when they are discharged from the hospital.  We will be sent home with a scale and a pulse oximeter and will have to keep a binder of all his pulses, weights, intakes and outputs.  The nurse practitioners for the cardiac outpatients are going to stop by around 2pm to further discuss the Interstage program and give us our binder.

Its Kevin now.  PT/OT stopped by, but because Speech was going to be coming soon they will have to come back later this afternoon.  Amy from Speech is here now, and she asked Cassie if she wanted to feed Owen now instead of waiting until his 3pm feed.  Of course Cassie said yes, she has been waiting to feed him since he was born.  He took 27ml by bottle again.  Way to go Owen, you are quite the champ.

Monday, April 16, 2012

All By Myself 10:49 April 16

Well, Kevin went home for the night to get Owen's car seat, stroller, and bouncy seat and to spend some time with our dog, Bear.  He is also going to get some more food for Bear, since he was probably getting low at my parents house.  He's also grabbing our mail that the lovely Trisha has been taking in for us while we've been away.  I'm happy to announce that the only thing in the mail was Owen's Social Security Card! We have been waiting for it so we can start the process to see if Owen will qualify for SSI.

Kevin left after we ate supper at the Ronald Mcdonald house (So around 7pm) and I drove over to the hospital to spend some time with the other man in my life, Owen. We snuggled in the recliner for a while, then he pooped three times, so I had to change his diaper.  His nurse took his rectal temp after I put the new diaper under his tushy and then he let loose again! I gave him a minute to finish up his business before I cleaned him up again...but as soon as I got the wipe to his butt he started to go again, and let me tell you, he almost got me.  At least it's not the weird alien slime looking poop (meconium) anymore.

I think I'm a still little rusty around babies. I was singing to Owen, but I couldn't remember any kids songs, so I ended up singing At Last by Etta James to him at least half a dozen times.  It's the only song I can remember all the words for! He didn't seem to care that it was the same one though.  It was nice to see him so alert when I was singing to him.

I'm so excited for tomorrow so we can start really working on his feeds and his PT/OT activities! :) That and daddy will be back with fun things for Owen to try out.

Afternoon rounds 4:46pm April 16th

They just came to Owen's room for afternoon rounds.  They talked about speech coming today and started trying Owen with the bottle.  They had one concern.  Owen's renal numbers have been consistently lower today than normal.  Right now he is just resting and his renal numbers are in the 50's when normally they are in the 70's.  They think this may be due to the fact that they suspended Clonidine this morning, so they are going to start giving Owen Clonidine again.  Hopefully that will help his stats come back up.

Speech 3:28pm April 16th

The speech pathologist was just in here to evaluate Owen.  First they started by asking us some questions about Owen like if his cry is as loud as it was before he went into surgery, which it isn't. They were also interested in how he is with a pacifier because that can be a god indication of how they will be with a bottle.  When he wants his pacifier, he sucks on it really nicely.  She also wanted to hear him cry so she had to get him a little bit agitated.  After she heard him cry a little bit, it was time to try the bottle.  When he was on his back, he started to cough a little bit so she put him on his side which seemed to help.  He didn't actually get much out of the bottle before he fell asleep, but he made a good try at the bottle and really seemed to know what to do.  The speech pathologist said that some kids have no idea what to do with the bottle.  This is the only feed that they are going to try today, but they will be back in the morning to try again.  We might have an ear, nose, and throat doctor come in to assess his vocal cords in a few days if he is having trouble with the bottle.  They will stick a tiny camera up his nose and down his throat to actually look at his vocal chords to see if one of them isn't performing properly.  With that assessment, they might be able to better help him feed from the bottle by positioning him differently so that gravity helps close the gap, if there is one, between his vocal folds.  I almost forgot, when the speech pathologist was holding him trying to get him to feed from the bottle, Owen let out a major fart.  Here is the result:
Total blowout.  He even soaked through the blanket that he was in and got the speech pathologist.  So, no more Spiderman for today.  This was his first blowout, Cassie is just glad that she wasn't the one holding him at the time.  Well now he is all cleaned up with new clothes on and even fresh sheets on his bed.

Good thing Cassie packed a bunch of clothes for Owen.

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