Saturday, May 28, 2011

Jasiu's Baptism

Today was Jasiu's Baptism and he was welcomed fully into the Catholic Church. Though he was Baptised with water in the delivery room by the hospital Chaplain because we wanted him to be purged of the "original sin" and be a child of God, we still wanted him to have Godparents and welcome him officially in the actual church. It was also important for my husband and me to do this before the second surgery. We contemplated having what we consider a normal Baptism and all that it entails in the Polish tradition however we just couldn't risk it and decided to do it our way. Instead of taking Jasiu to a public mass on Sunday during which the ceremony would take place, we opted for a private mass on Saturday with only immediate family and very close family and friends as guests, this way we minimize the exposure to germs. Instead of the large banquet hall party we had a quiet dinner with the most immediate family we have with us (grandparents, my sisters and Joe's sister with her husband and kids). This was also to reduce the game of let's touch the baby and as a result exposing him to even more germs.  I can only hope that everyone can understand our reasoning and that Jasiu himself will one day thank us for keeping him in our little bubble during this interstage period.

We arrived at the church fairly early and sat in the front row and didn't even turn around until towards the end of the mass. I WAS OVERWHELMED by the amount of family that we invited showed up and then some. It is truly touching that so many people really care about Jasiu and shared this special Holy Mass with us to pray for him, his health and well being. Words can not express my gratitude to you all that showed up to mass as well as those that couldn't be with us and still prayed for him. We will forever be grateful and may our prayers be heard.

Jasiu himself was a shining star today. He was quite cooperative and despite his "armor" the traditional outfit that he was Baptised in he did quite well. For those that are not familiar, we come from southern part of Poland near the Tatra Mountains and are called Highlanders, we have our traditional costumes and they mostly come out for special occasions and church holidays. Well this was truly a special occasion and we even got a pint size outfit for Jasiu. He looked so handsome, like a little man but much cuter. He was also very good during mass and slept for a majority of it, the same couldn't be said of his sister, Emily, who was never this naughty in church EVER. This may have something to do with me not holding on to her for the first time as we had Jasiu in church for the first time. She will look at that video one day and say how could I have been that bad...

Jasiu was so good I though to myself, God must really love him  but I thought to myself don't love him so much as to take him away too soon, let us have him first for a long while. I also didn't forget to pray for all the other warriors that are fighting the same CHD battle as Jasiu. These precious babies are so strong I can't imagine ever enduring what they do so we just pray for more strength for them and their parents.

Here are some pics that I took after the mass, some of the outfit parts are already off because we wanted Jasiu to get comfortable after a few hours of wearing his outfit.  Also, notice he does not have the feeding tube, he's been eating much better lately and has taken almost 3 ounces each feed over the course of an hour so we will try to do it one more day to give him a chance to prove himself and run it by cardio team on Tuesday if it's OK, if he doesn't do well we will have to put the tube back in and try again later.

Just missing the belt so pants look a little funny..

Little Goral

My smiley face

Just being silly Jasiu


Emily and her cousins
Professional pictures to come once photographer is done... once again THANK YOU TO ALL THAT SHARED THIS SPECIAL DAY WITH US.

Tuesday, May 24, 2011

Cath

I'm going to start out by saying Jasiu is such a trooper and did wonderfully for us the day of and after the cath. His last feeding had to be at 3 am because of the anaesthesia so I woke him up for that and than we had to be at the hospital by 6:30am so once again his sleep was disturbed, but at 6am, this little guy was all smiles and giggles. It almost broke my heart to know that he certainly didn't know what was going to happen but it's actually better that way I think . We went over the plan with the cath nurses and did all the vitals, (Jasiu is now 5.47 kilos= 12lbs .5oz). We also found out that this will require intubation, I had no idea :( I hate that and how the babies sound after extubation, but it had to be done. I signed all the consent forms and the nurses wheeled my smiling happy baby to get started. We wait in the waiting room drinking the hospital's awful coffee without creamer as it was not delivered that day and waited for the phone call to tell us that they are ready to do the actual cath. We got the call and then went to have breakfast, than I went to pump to the NICU pumping room.  I'm barely done and Joe calls asking where I am and that Dr. Patel already came out and gave him the lowdown and they are just waking up Jasiu and we'll be able to see him in half hour. Mind you, it only takes me 10-15 minutes to pump and the hospital is big but not that big, I thought it went way too fast.  So here is the information from the cath...

  • Pressures in the lungs are good
  • The shunt is narrowing a little but it gets taken out during the Glenn so it's a non issue
  • The Right Pulmonary Artery was narrow and was ballooned
  • 
    After Mom calmed him down
    
  • Heart function is good
  • WE ARE READY FOR THE GLENN !!!

We go back to see Jasiu and are greeted by not so happy camper with a very raspy voice and cry because of the vent, but not nearly as raspy as after the Norwood since it was in there only for couple of hours, and he's quite hungry.  However, all he needed was mommy, because he quickly calmed down, and drank 1.5 oz of pedialite.. to ease his stomach slowly to food after the anaesthesia.  Once awake he took some of his milk and went to sleep again while we waited for a room to open up for us on 2. Waiting, with hospital time sucks... we got to our room at 4!!! We have been waiting in a crammed recovery room for 6 hours.. but our little trooper didn't mind and was smiling like nothing ever happened.. he's so amazing.. After a night of intruding nurses, techs and doctors bothering Jasiu and me as we slept Jasiu was his usual happy self in the morning, though I was tired as heck, you can't help but smile when you see his big grin... All the nurses, cardiologists and nurses were wrapped around his little finger.. Jasiu was so happy and bouncy that he threw up his breakfast almost all over the cardiology fellow who was examining him at the time.. I had a feeling he was going to do this as I know the look on Jasiu's face, but wasn't prepared at that right moment.. we all had a good laugh and that was that. Our discharge x-ray, EKG and echo all looked good and even our pediatrician made an appearance. Life is good we went home and Emily couldn't be happier to see mom and Jasiu home again.  Somehow she does not do so well at night when I'm not home and instead of sleeping through the night as she normally does, Joe said she got up to go to the bathroom, than needed a drink, than she had a nightmare and etc.. Joe ended up sleeping with her all night and of course didn't get any rest himself either.

Next steps on this journey are the second open heart surgery for Jasiu. The Glenn... The cardiology and surgical teams will discuss Jasiu's case this Wednesday at their weekly conference and decide when his Glenn will be, than Katie, Dr. Illbawi's nurse will call us with the date. I think I will be a nervous wreck until I get that phone call. I'm already dreading it, though I think I am looking forward to it so that Jas gets stronger and better and able to see more people and grow without having another surgery hanging over our heads for a while. The feelings are indescribable. On one hand I want him to be better and know he needs it, on the other hand I will have to sign for his life and hand him over to the surgeons. He looks so good now... ughhh God will have to get us through this as he has so far.. that's all I can say.

Here are some pics of our little trooper...



Don't you just love the cute gowns they have <3


being wheeled back



Our funny man


Resting comfortably


So good for his echo



So ready to go home



Wagon rides are the best when they are out of the hospital !



Monday, May 23, 2011

So we finally got to the floor at 4pm today. Jasiu is a little more cranky but doing well. I hope he sleeps through the night like he does t home.
We have been in recovery room since 10:30 they did baloon the RPA so we are spending the night. Jasiu's doing well and were waiting for a bed to open on 2nf fl.
We kissed him goodbye and the cath nurses just took Jasiu back. The whole thing should be up to 3 hours until we see him again. Even for a cath it was hard

Sunday, May 22, 2011

Cath, Hopeful Hearts and Feeding Update

Tomorrow is our very first Heart Catherization.  I'm so glad Jasiu is still small enough to not notice. Joe's and my stomach is twisting and turning at the very thought of this procedure. It's partly because it's the first one, it requires anesthesia and this means that the Glenn is coming up, and that means we must sign for our son's life once again.  Anyways, hopefully we only hear good things from the report and we are home for the night. However if some intervention is needed I will spend the night in one of those comfortable hospital beds for parents again and Joe will come home to Emily.

This weekend I also went to a Hopeful Hearts support group meeting. It was wonderful and gave us (new CHD parents) so much HOPE.  This month Diane, the nurse/coordinator, arranged for a panel of ADULT CHD patients ranging from 12-30 years old. They are survivors and tough ones at that. The 12 year old has exactly the same CHD as Jasiu, HLHS and she is doing wonderfully, a completely well adjusted young woman who came with her mom, also a great resource. Two are nurses, one in PSHU and one that used to work in PSHU and now does something else nursing related.  One woman did competitive figure skating for 16 years!  One runs 4 miles every day! All of them went to college ( with the exception of the 12 year old) traveled abroad and are living NORMAL lives. It brings me hope that my son has a chance to do all that. A few months ago, I didn't even think we would be this far and here I am deeply believing that Jasiu will be able to do everything he wants. These people on the panel have all had 4+ surgeries, one had 11 OHS, the other had 8 and are still doing wonderfully. It's just amazing and Dr. Illbawi did all of them. That man is amazing as well, God must really guide his hands to do the amazing things that he does. The parents of these panelists that were there also gave me and the new parents much hope for normalcy. They confirmed that this CHD life is different, but adjusting is not easy but gets easier to deal with. They answered all questions honestly, you could see it in their eyes and sometimes it was hard to hear, but one must hear it and then really live it for yourself to be able to really understand. Being in that group I feel like they really know me and I finally fit in. It's kind of hard that my current friends and family can't relate, they can try to understand and symphonies but it's just not the same and I don't blame them for it, they can't possibly know and I don't expect them to. I would never wish something like this on anyone. But I no longer feel sorry for myself either. We I have a wonderful little boy, smiley and giggly and wiggly like a little worm now and I'm thankful for each day that I have with him. As one of the panelists said, no one is promised tomorrow, not the healthy person or the CHD person. So we live each day to the fullest, at least we try to for the most part.  Here I go digressing again.

For a feeding update now, Jasiu ate 3 ounces by mouth today in about 35 minutes. Not all at once and not without a few small screaming episodes but he did it. Joe was the one feeding him, as he was all day today since I needed to run a lot of errands and wanted half day to relax and spend some time with Emily.  Joe seems to push Jasiu much more with the feedings than I do. In the group I met a mom who gave me some advice about the NG tube and possible weaning plan that worked with her daughter. So I became obsessed again, I spent half the day researching feeding tube weaning and groups, programs and the like. It was about time I found a new obsession because I think I dug up everything under the sun on HLHS and needed an new topic. Based on my research and some common sense, I'm pretty sure Jasiu developed "tube dependency" and must be weaned off when it's medically safe. For him it probably won't be until after the Glenn, but I'm working on a plan and I think Joe will be a major part of that plan. I just can't seem to be tough enough for it. I give in way to easily. As soon as Jasiu starts crying or fussing at the bottle, I pull out and drop the milk in the tube because I can't stand seeing him upset.  Joe on the other hand works him a little. I still need to call the lady I met at the support group and continue my research but as soon as we recover from the Glenn next step will be tube weaning.  However 3 ounces proves to me that it's not that Jasiu can't eat, it's that he won't or doesn't want to. Weather is's the tube itself or laziness or tiredness we'll find out later but now the most important thing is prepping for the Glenn and recovery.

Until then please pray for our little guy for tomorrow to be a success. I will post an update as soon as I can.

Thursday, May 19, 2011

Quick Update

Just a quick update of what's been going on around here... Yesterday we had an appointment at the pediatrician. Jasiu came in at 12 pounds even !!! That doesn't seem like much only 4 pounds since birth and it puts him only in 25th percentile, but considering one open heart surgery, daily colic, inconsolable cries, daily puky and NG tube feedings that is an accomplishment to us. Also carrying him I definitely NOTICE that he has grown since we came home from the hospital. He's doing well and is healthy for the cath coming up on Monday,  but as the doctor said... "a lot can happen till Monday" so we are extra cautious and limiting interaction with other kiddos and probably won't make it to the park this weekend (just our backyard) let alone the two communion parties we have this weekend. Therefore Joe and I will alternate, Saturday I go out with Emily to one communion party and Sunday Joe goes with Emily to another all while trying not to catch something ourselves... our immune system can most likely fight off a small bug we may pick up but if we bring it home Jasiu's may not. So while we can't avoid all humanity, we have to be careful especially with Emily since she LOVES her brother and we can't seem to keep her off of him we try to wash her hands and face as frequently as possible.

Secondly, today Early Intervention came to the house to evaluate Jasiu... Occupational therapist, physical therapist, developmental therapist, speech therapist and the coordinator.. it was a party ! Jasiu has never seen so many new faces at once ever and seemed a little overwhelmed bud did fine even did #2 for them. Since he's only 2 1/2 months old there isn't much they are evaluating... He makes eye contact, holds on to the key rings, holds his head, moves his legs, reacts to voices and noises, he swallows when he's hungry and stops when he's tired.. a typical 2 month old. He wasn't allowed tummy time for 2 months anyways so he's had no time to build the strength in his arms. He has a heart condition that requires a healthy weight for the next surgery that prohibits us from letting him starve a little to be more enticed to take the bottle, so they can't do anything there either. It was pretty much pointless at this point, but the doctor sent them to us and they did their job. The recommendation... They should come back after his second surgery and the recovery time (so he can do tummy time) and then reevaluate again if he needs any type of intervention and therapy. So for now he will just get looked by the therapists during his clinics and we wait to see if he falls behind... to be continued.

For now we pray that Jasiu stays healthy until the cath an we get a good report and ate for the Glenn surgery. I already notice that he's outgrowing the shunt because he's tired quicker and his fingers and toes are a duskier bluish color than they were. His lips also go a little purple quicker when he cries a lot... on a happier note I think the colic is easing up a bit.. though I don't want to jinx it, he's been much better in the evenings and much less fussy.  :D

Friday, May 13, 2011

Swallow Study and Thank You's

Yesterday John had his swallow study. It was a DISASTER in more ways than one. First let me tell you, I had a rough idea of what it was going to be like, but I had no idea!  This Barium Swallow Study was suggested by our speech therapist that sees Jasiu at every Norwood Clinic/ Cardiology appointment. Since he is still only taking 1/2 to an ounce of milk by mouth, they were thinking maybe he is silently aspirating which could cause long term damage to his lungs. I also thought that it would tell me if there is irritation in the throat or any other gastric issue with him not taking more, I was WRONG. They just focus on the mouth through the esophagus and nothing further.  So we get there and Jasiu is hungry because they told me not to feed him too much before the appointment because he needs to eat in order for the test to work. OK, great, but with hospital time, our 11:45 appointment turned to 12:30ish  and by the time they set up the x-ray machine and it was around 1 pm. I dressed Jasiu in a front snap onsie because those are the easiest for cardiology appointments since I don't have to bug him too much with dressing and undressing as they really just need to see his chest and listen to the lungs once we weigh him (in his birthday suit). However this is not cardiology and an x-ray machine picks up the metal snaps and can't get a good picture on the monitor, so we have to undress him- STRIKE ONE ! Jasiu doesn't like this... Next instead of on my arms feeding nice and snugly to mom, he is placed on a hard x-ray table with some towels - STRIKE TWO! Than the tech moves him around to get a good angle and the speech therapist practically shoves the bottle of Barium liquid into Jasiu's mouth while he is crabby and crying- STRIKE THREE! Here he's screaming and they keep trying to feed him. I know my baby by now, there is no way that Jasiu will do any sucking of any bottle when he is crying no matter how hungry, that's just not him. Apparently food and liquids doesn't console him when he's angry and if it does it's only for the two minutes it takes to realize that this is the bottle and not a pacifier. So we finally stop after 10 minutes of nothing down Jasiu's throat.  I calm him down in my arms first unsuccessfully as I'm wearing a cold lead vest to protect myself from the x-ray machine.. then I get a blanket over me and finally console this poor hungry crying baby. They decide to prop him up on a chair and see if that would work since he won't do it laying down (He's never ever eaten lying down besides in our arms) That second attempt also did not work either as he is too little and kept falling over and still it wasn't in my arms so he wasn't having it.  Our final attempt was at my request to keep him in my arms but not snuggled to me but arms extended in front of the x-ray table and the machine so that he's in both my arms but in between the x-ray machine, the speech therapist was doing the feeding as I ran our of hands and the tech was doing the x-ray maneuvering and a second speech therapist was looking on the screen as Jasiu was swallowing and looking where the barium was traveling as he was eating.  Long story short... we got 4 sucks out of this cranky baby and only saw one micro aspiration and probably because by that point he was beyond pissed off and wasn't having any of this nonsense. So we are back at square one and I just have to deal with it that he is probably just to weak to eat more and hopefully after the Glenn he will gain much more strength to take the bottle.  I know this and yet still am having a hard time accepting it so every meal time is stressful both on me and on Jasiu as I trick him with the pacifier to get more sucks out of the bottle playing the old switch-a-roo. I decided yesterday after all that that I will no longer do it. He will eat what he wants from the bottle and the rest will be in the tube, when the time will come Jasiu will eat... Everyone assures me of this, the pediatrician, cardiologist, speech therapist and heart moms who have been there and done that.  Easier said than done but I will Truly TRY !!!    After that ordeal I go to the waiting room to feed Jasiu via tube since he's starving but as always around that time, Jasiu decides he needs to take care of his needs and does #2 so we stop the feed because I will need to change him and raising his butt above hiss stomach causes him to throw up if his stomach is full so I wait until he's done but I have to disconnect the feeding tube from the NG tube. After I change him I reconnect and fill up the feeding tube practically one handed  as he's in my arms because he's crabby. So we continue feeding when the connector from the NG to the feeding tube slips off and most of the milk spills all over me and Jasiu the chair and the floor. : (   Good thing I had another bottle to pour in once we got things under control. There was also a nice lady in the waiting room that helped me clean up the mess. (more on that later)  Then we finish up feeding, gather our things and finally get the heck out of there all wet by 2:30 pm and we were there from 11:20.  Needless to say that my experiment to see if I can handle NG feedings outside of my home all by myself FAILED. I will need to continue to bring someone to our appointments to help out and here I thought I had mastered it all.

Second, today I got a nice card in the mail completely unexpected. I want to thank this special person for making my day. I really appreciate the kind words and prayers. This coming from people who had hardships of their own really means a lot to know that they care. To add to this, as I write this blog entry the doorbell rings and a delivery guy is standing at the door with a bouquet of cookies... It's Cookies by Design from the same family as he card I received. How thoughtful. Emily and I LOVE them and they are delicious.  A HUGE THANK YOU !!! I can't wait for all of you to be healthy so you can stop by and finally meet Jasiu I know it's hard with a toddler on your hands ...


Finally, a special request for Aiden, a little guy we met at Hope hospital and whose mom helped me out when I had feeding troubles with Jasiu in the waiting room. Since we had much time to kill in the waiting room, we got talking with his mom and poor Aiden has an unidentified problem. The poor guy can not keep his food down. He is one month old and has not gained an ounce since birth despite being able to chug 6-8 ounces of milk from the bottle. His problem is that he throws up most of his feeds, every feed and his mommy and doctor still have not figured out the problem. They thought that the passage between the stomach and the intestines was to too narrow.. stenosis of some sort ( I missed the suspected diagnosis) but after the first x-ray it came back negative, so they are still back at square one trying to figure out what the problem is.  Say a prayer for Aiden and his mommy so that this tiny guy can gain some weight and be a big boy like Jasiu. Compared to Jasiu he was so tiny and I was amazed that he could suck that much... When she heard that Jasiu only takes in half an ounce she was amazed but then noticed his NG.   Again, I would have no idea any of these problems existed with babies had I not had Jasiu, the world is full of problems  and kids that need lots of help and we can only pray that we can figure out how to best help them and live life to the fullest.

Monday, May 9, 2011

Lil Me Photography Pictures

A few weeks back Lisa with Lil Me Photography came to our house and patiently worked with us to take beautiful pictures of Jasiu. I wanted to get professional pictures taken of Jasiu because we did it with Emily and I don't want him to someday tell me "hej... what about me" though I doubt it since he's a boy and probably could care less.  HOWEVER.. They are little only once and they are both so special that it's so worth it. 

A huge thanks to Lisa for coming to our home (since it's the bubble Jasiu lives in for now) and patiently waiting while I finish feeding him, take off feeding tube and tape, rock him to sleep ( a few times) and making Emily smile, I mean really genuinely smile... I highly recommend her and her work speaks for itself... take a look.



















Friday, May 6, 2011

Cardiology update...

We had our biweekly appointment at the Heart Institute with Jasiu on Thursday. We were waiting quite a bit as normal but here is the gist...

  • Weight good-10 pounds 12 ounces
  • Blood pressure also good
  • Sats decent at 70-75
  • Occupational therapy great
  • Speech therapy- not so great - swallow study next week
  • Echo - not so good but as expected
So the big thing is the echo. Jasiu was tired out by all the vitals taking, therapy and struggling with the bottle that when it came to the echo I feed him through the tube and as his tummy was getting fuller his eyes started closing and he fell asleep. Jas slept through the whole echo and the additional30 minutes it took for the doctor to read the results and get back to us. The pressures in his heart have dropped quite a bit. However they assured me that its to be expected as Jasiu outgrows his shunt and will be in need of his second surgery. So its not completely bad and is quite normal but still not great...if that makes any sense. On a side note... I was wondering how much longer we will get away with putting him to sleep during an echo before he starts thrashing and needing happy meds to calm him down for them.

He was also doing the same thing with the bottle as at home, so the therapist suggested a swallow study which should be done next week. I hope its just tiredness and not another problem... because JJ should have more strength after the Glenn and take to the bottle then ... Please keep praying hat he does.

We don't have to go to clinic until after the cath.. yejj !!!

Tuesday, May 3, 2011

Cath Scheduled

There haven't been many updates because nothing changed lately with Jasiu. He is doing well and gaining weight but still not liking the bottle :( It is a constant struggle when feeding him because each feed we try first with the bottle (as we have from the beginning) and he will take 1/2 sometimes a whole ounce by mouth and sometimes he will squirm away from the bottle as if we're feeding him acid or something unbearable to eat. He then gets frustrated and starts getting hysterical and we have to calm him down before starting the tube feeding since we do gravity feeding and when he cries he pumps air out of the tube and nothing goes down. So there is a fine line between challenging Jasiu to take more by bottle and getting him upset from trying too much.

Aside from eating challenges we also have an evening challenge, colic. I'm convinced that it is colic because each day 7pm almost to the minute this baby turns from a peaceful little guy to a very irritable screaming one and it looks as if someone is twisting his insides and he cries and squirms and just nothing can console him. So from 7 pm to 11pm we try our hardest to rock the colic away.  He is on some one's (Joe and I switch off mostly) arms because this little guy is getting heavy to be rocked for 4 hours by one person. Sometimes he takes a brake for a bit and falls asleep but out of nowhere he screams out in pain. It's so heart braking to see as a parent and really freaks out visitors, so we tend not to invite people over (besides immediate family but even my dad can't handle it) over in the evening. It's not enough that this poor kid has endured so much already, this is another issue we have to deal with.  Some fellow heart mamas suggested I try gripe water and I started it on Monday. I ran it by the cardio and they gave their blessing to start something herbal and it shouldn't interfere with any of his medicines. I still can't believe I have to read out every ingredient to the nurse practitioner before placing anything in this baby's mouth. The Polish baby teas have chamomile, and apparently that may interfere with some medications and no can do, plus they don't want too much fluid in him that is not providing any real caloric value to him. He already gets plenty of water from the flush of the tube after each feeding.

Finally, yesterday I got a call from the hospital to schedule Jasiu's heart catheterization.  When the nurse introduced herself I felt a punch to my stomach from the anxiety. It's yet another procedure that he has to get anaesthesia for which makes me nervous. Since this will be a first of many, I'm extra nervous not sure what to expect and what the results will be. This is considered the pre Glenn cath meaning they are gathering data about the pressures and heart function to prepare for the second surgery which as of now will be sometime middle of June, which makes me happy and even more nervous, but that's going to be it's own post.  We will be going in on Monday May 23rd at 6:30am, first case of the day. Knowing what we know now, hospital time is hospital time and it may or may not happen as the first case, but were hoping.  It should be an outpatient procedure if they consider it diagnostic only, however if they find something that needs intervention, like ballooning the pulmonary arteries or any other actual procedure Jasiu will have to stay overnight. So they tell me be prepared to stay overnight... but hope for the best. We do have our cardio appointment on Thursday along with an echo, so we will get a glimpse at the heart function there as well.

In the meantime, I pray and ask for your prayers that Jasiu continues to stay healthy until the cath and the Glenn surgery.  This week Joe came down with a nasty cold/flue and is now wearing a mask around Jasiu and sleeping on the couch, since Jasiu sleeps in our room. However today, Jasiu napped in his crib for the first time today, I'm slowly going to get him to like that place and maybe just maybe I will get over my fears and have him sleep in his room across the hall instead of two feet away from my bed. Eventually he will outgrow the bassinet and then what am I going to do .. .move into Jasiu's room or move the crib to our room, I hope it doesn't get to that. He sleeps two feet away and we have two types of monitors on him.. one of those Angel Care one's that detects if there is movement (like breathing) and one with a day/night camera so I can see him in the dark. I'm not sure if I'm the only mom this freaked out, but I'm hoping to grow out of it or at least get more comfortable with it. As always I went off topic... please help us pray for Jasiu and his continued health.