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
Thursday, May 19, 2011
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.
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.
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.
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...
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 !!!
- 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
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.
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.
Monday, April 25, 2011
Easter Test Run
This Easter was the most different Easter we have ever had. First of all, we have Jasiu, it's his first big holiday and he is interstage, so we are keeping him in our home... aka "the bubble" he is comfortable and used to any germs left in this house. So, instead of waking up the kids for early morning Resurrection mass at 5:30 am as we have done with Emily last year, I went alone to church (as I have done since Jasiu came home) and I realized I really miss going to church with my husband and Emily and I don't even know how it feels like to be in church with Jasiu. I sometimes wonder if the people who may recognize us from before wonder what happened to us. After I came home we switched and Joe went to the next mass and I prepared Easter breakfast (we didn't even feel comfortable taking Jasiu to my mom's house yet) and Joe's parents came over to eat with us, though my family surprised me and they all came too, nice surprise. Than since we couldn't go to Joe's family for dinner as we usually go, which consists of over 20 people and a whole bunch of kiddos running around, we couldn't risk exposure to new environments so soon. So dinner came to US !...
My dear mother cooked a 2 course dinner and deserts and brought it all to my house so we could be together. My godmother and cousin also came over. Thank goodness everyone was healthy so that they could visit and we spend a nice afternoon all together.
Now to the test run... Since it was Easter and we had a whole bunch of family over we thought it would be a good day to allow John to be tube free and see if the reason he's not taking to the bottle is because of the tube in his throat. We gave him 12 hours and tested how much he would eat better and on demand. ( This was doctor approved of course as long as he got 12 oz during the 24 hour period) However Jasiu was quite content to have the tube out, it did not give him enough comfort to take even half of his bottle at once. During the 12 hours or so, he ate one to half ounce at a time and every 1-2 hours. It was exhausting for him and us, though we didn't mind he seemed to be struggling. Because we can't do this test run for a longer period of time just yet (fear of dehydration and impact of that on the heart) we had to put the tube back down. Sad day for us. One of the only good things from this was that we took a few pictures of Jas without the tube again and we got to see his precious face all day. I am praying that he gets stronger and stronger and can start taking gin more by bottle . I have a feeling that the throwing up and reflux has something to do with the NG tube but can't prove it unless he went longer without it, but we can't do that yet so that experiment will wait until later. We keep praying that he will just get it one day until then, we keep practicing the bottle with the tube in.
Now for a few pictures of our festivities:
My dear mother cooked a 2 course dinner and deserts and brought it all to my house so we could be together. My godmother and cousin also came over. Thank goodness everyone was healthy so that they could visit and we spend a nice afternoon all together.
Now to the test run... Since it was Easter and we had a whole bunch of family over we thought it would be a good day to allow John to be tube free and see if the reason he's not taking to the bottle is because of the tube in his throat. We gave him 12 hours and tested how much he would eat better and on demand. ( This was doctor approved of course as long as he got 12 oz during the 24 hour period) However Jasiu was quite content to have the tube out, it did not give him enough comfort to take even half of his bottle at once. During the 12 hours or so, he ate one to half ounce at a time and every 1-2 hours. It was exhausting for him and us, though we didn't mind he seemed to be struggling. Because we can't do this test run for a longer period of time just yet (fear of dehydration and impact of that on the heart) we had to put the tube back down. Sad day for us. One of the only good things from this was that we took a few pictures of Jas without the tube again and we got to see his precious face all day. I am praying that he gets stronger and stronger and can start taking gin more by bottle . I have a feeling that the throwing up and reflux has something to do with the NG tube but can't prove it unless he went longer without it, but we can't do that yet so that experiment will wait until later. We keep praying that he will just get it one day until then, we keep practicing the bottle with the tube in.
Now for a few pictures of our festivities:
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| Emilka loves to cuddle with Jasiu |
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| Emilka and Ola |
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| loves to sleep like this |
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| It was supposed to be a family photo... |
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| ...but Emilka passed out brfore we could :) |
Friday, April 22, 2011
Cardiology and Speech update
So we had our bimonthly Norwood Clinic today and it went relatively well, you could say it was a party. In one small exam room Jasiu hosted the nurse taking his sats, weight and blood pressure (which was unsuccessful on all 4 of his appendages) me and Joe, the speech therapist, occupational therapist and the nurse practitioner. John did quite well with all that commotion and showed everyone his good side until it came time to feed, since that is his weakest point right now. I still can't believe this kid has half a heart and his biggest hurdle is the feeding right now. So we fed him and he did his usual. He frantically searches for food like all newborns, than he gets the bottle sucks and swallows 4-5 times and then turns away from either annoyance or pain or irritation. When he got upset, I was able to calm him down with the pacifier and than all over again... the verdict... It's not the swallowing, he's doing great at that they can only suspect that the tube is irritating his throat, or the reflux or the taste of the formula that we are fortifying the breast milk with. So we were sent home with a whole bunch of let's try's.. that's pretty frustrating because I want an answer to a question that is not easily answered and we must do things by process of elimination and trial and error. Ohh this will take a lot of patience. So we will try and hope things start turning around feeding wise. The worse part for me is that everyone that knows us outside of the heart community always asks, "does he still have the tube" No one asks about his HEART ! My theory is that since they can't see his scar or visibly see his CHD, it somehow is diminished in importance, yet since they see the tube they are quite concerned. I keep telling them and myself, that though we want him to thrive and be able to eat all on his own, the tube is not as important as his heart right now. Anyways, enough venting and on to other updates..
On Easter we were given the green light to try another half day tube free to see if Jasiu will eat more by bottle, this means that we will all be happy to see his little face but someone will probably be feeding the baby around the clock as one ounce per feed only lasts so long. So we should have some great pics of him and his cute little face. We did have a professional photographer come to the house and take pics of Jasiu and his sister Emily. See link below for a small snapshot of the cute photos we were given. Thanks to Lisa of Lil Me Photography. She was so patient and the pictures came out great, once I pick all the ones I want (probably all of them) I will post here as well. http://lilmephotography.com/blog/?p=2006
And some other fun news from Dr. H is that we are good to do BELLY TIME !!! Yippee.. Jasiu can work on some upper body strength. He does quite well with holding his head for a bit at a time, but now he can start using his hands to support himself. So we did 5 minutes of belly time and it looked like our little rock star was going to crawl away. He was able to support himself for a few seconds on his hands, but his legs were moving so much that it looked quite funny. Here is a pic of our little turtle.
Next appointment in two weeks and we will have an echo.
On Easter we were given the green light to try another half day tube free to see if Jasiu will eat more by bottle, this means that we will all be happy to see his little face but someone will probably be feeding the baby around the clock as one ounce per feed only lasts so long. So we should have some great pics of him and his cute little face. We did have a professional photographer come to the house and take pics of Jasiu and his sister Emily. See link below for a small snapshot of the cute photos we were given. Thanks to Lisa of Lil Me Photography. She was so patient and the pictures came out great, once I pick all the ones I want (probably all of them) I will post here as well. http://lilmephotography.com/blog/?p=2006
And some other fun news from Dr. H is that we are good to do BELLY TIME !!! Yippee.. Jasiu can work on some upper body strength. He does quite well with holding his head for a bit at a time, but now he can start using his hands to support himself. So we did 5 minutes of belly time and it looked like our little rock star was going to crawl away. He was able to support himself for a few seconds on his hands, but his legs were moving so much that it looked quite funny. Here is a pic of our little turtle.
Next appointment in two weeks and we will have an echo.
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| First Belly time ever - 8 weeks old exactly ! |
Saturday, April 16, 2011
Bringing Hope to Broken Hearts and Hopeful Hearts
Sisters by heart is continuing its mission to inspire and support newly-diagnosed HLHS families.
With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.
Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.
I received such package from these wonderful ladies. I was so lost when we found out about Jasiu, we struggled to make the right decision for our family. I still beat myself up for the fact that it took me a while to decide what to do, though in the back of my head I always knew we would fight for this baby and fight alongside with him. But these women and the online support I found was amazing. Who is more amazing... those kids, those precious warriors who had rough beginnings and are still here being an inspiration to Jasiu and me as well as to newly diagnosed parents that need to know that there is so much hope for them.
You can say Jasiu is one of them, though his journey just began, he's already in the video sporting one of the great and thoughtful gifts from the care package. The side snap onsie, (which I can't seem to find in bigger sizes) are wonderful for the hospital and doctor visits, so that the babies don't get super cold during echos or other examinations. Just having the notebook and pen from Sisters by Heart gave me a reminder that we are not in this alone, that there are many survivors and we need to keep fighting. So thanks Sisters by Heart.
As for all of our readers, you can help too, you can donate to this great cause because CHD's are the #1 birth defect that not many people know about ( I had no idea) and now am getting so involved.
With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.
Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.
I received such package from these wonderful ladies. I was so lost when we found out about Jasiu, we struggled to make the right decision for our family. I still beat myself up for the fact that it took me a while to decide what to do, though in the back of my head I always knew we would fight for this baby and fight alongside with him. But these women and the online support I found was amazing. Who is more amazing... those kids, those precious warriors who had rough beginnings and are still here being an inspiration to Jasiu and me as well as to newly diagnosed parents that need to know that there is so much hope for them.
You can say Jasiu is one of them, though his journey just began, he's already in the video sporting one of the great and thoughtful gifts from the care package. The side snap onsie, (which I can't seem to find in bigger sizes) are wonderful for the hospital and doctor visits, so that the babies don't get super cold during echos or other examinations. Just having the notebook and pen from Sisters by Heart gave me a reminder that we are not in this alone, that there are many survivors and we need to keep fighting. So thanks Sisters by Heart.
As for all of our readers, you can help too, you can donate to this great cause because CHD's are the #1 birth defect that not many people know about ( I had no idea) and now am getting so involved.
Hopeful Hearts is the name of the support group that was created by the families of CHD kids treated at Hope Children's Hospital in Oak Lawn, IL. I went to my very first meeting today and it was so wonderful. I got to meet a few moms and even a 12 year old girl with HLHS who lives in Plainfield who was such an inspiration to me as well. It's amazing to see her doing so well and we can only hope that Jasiu and all the kids in his age group can do as well as she is. I even met a mom who lives barely 5 minutes away from me with a little one year old also with HLHS. I also saw friends that I connected with before Jasiu was born and helped me prepare. It was nice to be around others who understood what our family is going through in person. This group is really good for many reasons, but my main take-away is that I'm NOT CRAZY, the thoughts, feelings and fears I have are completely NORMAL for the situation we are in. That's a big step forward for all of us as I'm finally adjusting to this new normal and second it gives HOPE as the name suggests.
Saturday, April 9, 2011
Cardiology update
John had his weekly cardiology appointment yesterday and it was loooong. First of all, a BIG thank you to ciocia Aga for coming with me and pretty much was my butler... it really does take two still to do things with this baby because I'm holding John and speaking with the nurses, then John poops, the bag is stuffed so Aga hands me diapering supplies, i change him, nurses weigh him, we wait and then he poops again, so Aga does her thing again, then the echo..., we need to switch rooms so we need to move John (in my arms) car seat, baby bag and my bulky jacket. Echo tech pisses John off, we need to give him the bottle, Aga gets it, i make sure John doesn't squirm off of the table. Well we know but the tech doesn't that the bottle satisfies John only for the first 20 mls then we do the tube... so i take baby in my arms calm him down and echo tech continues.. then John realizes nothing is going in his stomach gets pissed again...so Aga gets the tube feeding stuff ready...we feed him John calms down and echo continues.Then we wait for doctor to look at all pictures and Aga keeps me sane while waiting 20 minutes. So the verdict after all the shenanigans:
On other news about Jasiu, he's getting quite the jokester and likes to play with mommy occasionally. One night he'll fall asleep peacefully and other nights mom and dad do the happy dance all over the house with him to calm him down. This week he also pulled out his NG again but this time at 4am... Since then he sleeps in what we call the boxing gloves. Though I will NEVER allow this kid to box even for a second! In the midst of trying to calm him down and put in the NG, I picked out the wrong tube and the opening part doesn't work with the good tubes, so feeding is a pain because we need to attach an extender. This tube will be in until this coming Thursday since we have a photographer coming to our house to take pictures of Mr. Jasiu and I will take out the tube for the time being. Let's hope Jas cooperates with mommy and the photographer.
- Heart looks good. Small leak in the valve but within normal for these kiddos
- The shunt has some slight narrowing were it was sown, but again within normal for this amount of time post surgery
- There is also some ballooning happening on the arch where it was patched up during the Norwood but not a big concern
- we will get a call to schedule the pre Glenn heart cathedarization (sp?)around May 25th
- we will also get a call to tentatively schedule the Glenn sometime in June, probably later part of June unless John will tell us otherwise
- In regards to vomiting - Doctor said we are probably lucky that John only vomits once or twice daily only, and we got another med to see if it helps, he is already on prevacid and zantec.
- Speech did not see John eat AGAIN ! since we had to feed him during the echo, but gave us additional pointers to see if Jasiu would take more than 20-25 mls by bottle.
- Next appointment - 2 weeks
On other news about Jasiu, he's getting quite the jokester and likes to play with mommy occasionally. One night he'll fall asleep peacefully and other nights mom and dad do the happy dance all over the house with him to calm him down. This week he also pulled out his NG again but this time at 4am... Since then he sleeps in what we call the boxing gloves. Though I will NEVER allow this kid to box even for a second! In the midst of trying to calm him down and put in the NG, I picked out the wrong tube and the opening part doesn't work with the good tubes, so feeding is a pain because we need to attach an extender. This tube will be in until this coming Thursday since we have a photographer coming to our house to take pictures of Mr. Jasiu and I will take out the tube for the time being. Let's hope Jas cooperates with mommy and the photographer.
Saturday, April 2, 2011
Good Days...
Finally, (and hopefully not jinxing myself) my prayers are slowly being answered. I know God has so many to get to with all these little kiddos being sick, parents worried and everything else going on in the world, but mine are getting on the list, at least I'd like to think so... Things here are starting to turn around. Our new normal is now second nature with meds and figuring out when a cry spell during a diaper changes puts his sats to dangerous lows or just winey and shallow which are ok as long as they are temporary. As Jasiu is getting older he's tolerating diapering much better and I rarely have to pick him up mid change poopy but and all.. We still check his sats (oxygen saturations) quite religiously but now out of habbit. His color is awsomely pink and normal looking with the occasional purpulish lips or really pale hands but nothing to be worried about as long as it goes away once we move him. Don't get me wrong, I still worry but that will never go away.
Jasiu also cries much less than he used to, so that makes for a happier mama as well. He sleeps better and can lay in his play pen or in the crib for a few minutes without getting nervous while I get his milk and meds ready. It's not perfect yet but much better. His home nurse visits are good and getting shorter and doctor's appointments good as well.
The one thing we have to work on is BOTTLE FEEDING, that is a constant on the prayer list. Jasiu still takes about 15- 20 mls and gets either really tired or disinterested. I was really upset at last clinic because Speech Therapy people, those that also handle the bottle feeding techniques and issues completely ignored us last thursday and were not there. I even called ahead of our appointment to make sure they are there and the nurse paged them 4 times and nothing. I really want them to see him as they are trained for cases like these. We really want John to be able to get the best help so that he can bottle feed completely if possible. For now we have the NG tube that we learned to manuver around and seems to be doing fine. John only pulled it our once and I was able to get it in myself. I hope the next time it goes out is when we do his baby pictures but not sooner :-D
On another lighter note, the basement remodel project that was started 4 weeks befofre John's birth picked up again this morning. My father in law has a few weeks vacation and is helping, more like forcing, Joe to pick him up and they are working on it. And here I was thinking it wouldn't be done until after the Glenn!
Also, my awsome husband is picking up the weekend night feedings as he doesn't go to work on the weekends and is finally able to handle it all by himself. It also helps that we were given the green light to let the baby seleep at night until he wakes up from hunger instead of the every 3 hours on the hour asleep or not. We just increased the amount per feed and have to make sure he gets 7 in 24 hour period to get all the calories and ounces the dietitian calculated for a healthy weight gain. John also seems to be tolerating this well during the night, but occasionally throws up during the day. This however I think is because he just moves so much more during the day and it's natural for some babies to just throw up a bit. So since Thursday I got more than 2 hours of continuous sleep and last night it was almost 4 (had to get up to pump anyways), but baby steps. I feel like I am functioning much better as I'm also a little more rested... intersting coincidence .. right?!?!
Finally, Jasiu is smiling and cooing and not just because of gas ! It started last night and I LOVE it.
PS Sorry but haven't figured out how to rotate pictures here yet :(
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| Smiling |
Finally, (and hopefully not jinxing myself) my prayers are slowly being answered. I know God has so many to get to with all these little kiddos being sick, parents worried and everything else going on in the world, but mine are getting on the list, at least I'd like to think so... Things here are starting to turn around. Our new normal is now second nature with meds and figuring out when a cry spell during a diaper changes puts his sats to dangerous lows or just winey and shallow which are ok as long as they are temporary. As Jasiu is getting older he's tolerating diapering much better and I rarely have to pick him up mid change poopy but and all.. We still check his sats (oxygen saturations) quite religiously but now out of habbit. His color is awsomely pink and normal looking with the occasional purpulish lips or really pale hands but nothing to be worried about as long as it goes away once we move him. Don't get me wrong, I still worry but that will never go away.
Jasiu also cries much less than he used to, so that makes for a happier mama as well. He sleeps better and can lay in his play pen or in the crib for a few minutes without getting nervous while I get his milk and meds ready. It's not perfect yet but much better. His home nurse visits are good and getting shorter and doctor's appointments good as well.
The one thing we have to work on is BOTTLE FEEDING, that is a constant on the prayer list. Jasiu still takes about 15- 20 mls and gets either really tired or disinterested. I was really upset at last clinic because Speech Therapy people, those that also handle the bottle feeding techniques and issues completely ignored us last thursday and were not there. I even called ahead of our appointment to make sure they are there and the nurse paged them 4 times and nothing. I really want them to see him as they are trained for cases like these. We really want John to be able to get the best help so that he can bottle feed completely if possible. For now we have the NG tube that we learned to manuver around and seems to be doing fine. John only pulled it our once and I was able to get it in myself. I hope the next time it goes out is when we do his baby pictures but not sooner :-D
On another lighter note, the basement remodel project that was started 4 weeks befofre John's birth picked up again this morning. My father in law has a few weeks vacation and is helping, more like forcing, Joe to pick him up and they are working on it. And here I was thinking it wouldn't be done until after the Glenn!
Also, my awsome husband is picking up the weekend night feedings as he doesn't go to work on the weekends and is finally able to handle it all by himself. It also helps that we were given the green light to let the baby seleep at night until he wakes up from hunger instead of the every 3 hours on the hour asleep or not. We just increased the amount per feed and have to make sure he gets 7 in 24 hour period to get all the calories and ounces the dietitian calculated for a healthy weight gain. John also seems to be tolerating this well during the night, but occasionally throws up during the day. This however I think is because he just moves so much more during the day and it's natural for some babies to just throw up a bit. So since Thursday I got more than 2 hours of continuous sleep and last night it was almost 4 (had to get up to pump anyways), but baby steps. I feel like I am functioning much better as I'm also a little more rested... intersting coincidence .. right?!?!
Finally, Jasiu is smiling and cooing and not just because of gas ! It started last night and I LOVE it.
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| Emily Holding John for first time |
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| Such a big sister |
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| Tube Free for just a little while ! |
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