Hope Picnic

What a wonderful day we had today at our first Hope Children's Annual Picnic at Brookfield Zoo. It was perfect weather, the kids were happy, we left on time.... and I left my camera at home :-(  I was so sad, it was our very first Heart picnic and a first family outing in a pretty long time but after a while it was a little liberating to not be constantly running around taking pictures, rather I saved the 24 pictures I was allotted on the disposable camera I had to purchase for pretty special photos.  I hope they turned out as I have to wait at least 24 hours so that we can get them developed tomorrow. Really, I don't know how we did it 10 years ago when we had to wait for photos to be developed before we got to enjoy them. But just as photo technology has changed for the better, so did medical technology. And that is why we were at the zoo in the first place...

It was a day of celebration. Personally I celebrated our small and big achievements with Jasiu this year, well 7 months and one week to be exact. Today we got to meet so many amazing families with amazing kids just like Jasiu who are all such strong warriors words don't do them justice. Its hard not to get emotional, but I finally got to see the children behind the numerous blogs and caring bridge pages I read about every week. They are all doing so well, you would not be able to tell that any of these kids is sick, yet alone gone through multiple open heart surgeries. Today, there were just having fun and enjoying the day, sun and friends. Most of the kids in our circle of heart friends are still quite young so the kids didn't get much out of it as the parents did, but it was almost therapeutic to see families that know EXACTLY what you went though and are experiencing and feeling and to see each and every one of those kids thriving and sharing our stories and words of advice, etc.

Jasiu was his usual happy self and showed off his killer smile all over. Emily was also a great big sister and was pretty well behaved, such a big girl she is already. We got to see so many of the wonderful staff from Hope that we would have loved to thank each and every one of them personally, but there were so many people and just not enough time.  We did however stay in a quite a large crowd, because we can hardly call it a line, to see our beloved Dr. Illbawi. Every time I see him, I get goosebumps, this man and his team of surgeons literally held our son's heart in his hands. He did his magic, two such precise procedures, his hands guided by our wonderful God to do such miracle work. It is just amazing to think about and something I still have a hard time grasping. It's so overwhelming to think that these babies, kids and young adults are all here because of this very man. He has such charisma even if you didn't know him he would probably smile at you walking down the street.  He got to hold Jasiu for a picture (on my disposable camera so I hope it comes out). I did get a small video which is not the best quality, but it will be cherished forever.  I can't even describe our gratitude and though it's his job, taking the time out to see these kids, meet the parents and just see us for a few minutes at at a time is just so good of him. He won't remember all of our names, but we so remember him and pray for him to keep doing what he is doing. It's just so wonderful, wonderful wonderful !!!!

There is one thing that really struck me today and it was before we even entered the zoo. A woman also on her way to the heart picnic noticed I had my tickets in my hand and asked if were also going to the picnic. I smiled and said yes as she was holding the same envelope. Than she asked me something that wouldn't seem like anything significant, except to probably another heart mom. She asked "Which one, which one of your kids [both sitting in our double stroller] had the heart surgery". It was so amazing that our Jasiu looks so good to the naked eye he doesn't look like there is anything remotely wrong with him. It meant so much to hear that I can't even describe it, I'm literally tearing up while I even type this. We are truly blessed that Jasiu even with half of his little heart can be doing so well. Truly just amazing and I don't think I will ever be able to grasp it.



Now since I did not have my camera and our camera phones are so outdated, I only snapped these up on the marry-go-around.  Emily is a pro at these and it was her idea to go, but it was Jasiu's first ride and boy did he hang on to that bar for dear life. The look on his face was priceless as the animal he was sitting on started moving. Just too funny.  So here they are, not great quality but visible. When we finally get out other prints from Jewel ( and they are half way decent) I will share.



Almost holding on all  by himself




The marry-go-around PRO :-)





Jasiu and Dr. Illbawi

Welcome to Holland...

Another mom found this and posted it.  It sums our new normal perfectly... try to imagine... though HLHS is not a visible disability, it has it's challenges and rewards and I am no different, This is almost exactly how I feel at the moment.

Welcome to Holland ~by Emily Perk Kingsley

How do you describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo, David. The gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""HOLLAND?!?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place... After you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away...because the loss of that dream is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things....about Holland.

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits to close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.”  But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.




© Dana Nieder 10/2010 All Rights Reserved

Please feel free to forward this, blog about it, post it places, etc.  My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone.   If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out.

And we doubled....

In size that is!!!!  :) Yes, after a long 6 and a half months, Jasiu has finally doubled his birth weight. Born at an even 8 pounds he weighs (unofficially, on my baby scale I purchased from  Babies R Us) 16 pounds 4 ounces.  Officially will be when he goes to the pediatrician for a weigh in in 3 weeks.

I still don't know how he does it. To this day he does not take in any more than 25 ounces of fortified breast milk per 24 hours, 22 on a good day about 18-20 on a worse day. And all this is not an easy day to get him to take it and almost 70% of this is while he is either sleeping or semi unconscious before he falls asleep. His midnight bottle is the best, he's so hungry, yet sleeping that he takes the 4.5 ounces in about 15 minutes. The rest of the day, he snacks at about half to an ounce at at time, and that takes A LOT of work. We have been blessed with two great grandmas, who watch Jasiu and Emily while Joe and I work and they have patience of saints when it comes to feeding Jasiu. He needs to be completely distracted to eat so that he doesn't realize he's doing it. To me that is baffling and I can't seem to accept why he doesn't like it so much. It just seems so unnatural to me. He could go 5 hours without eating (if we let him) and he wouldn't be the happiest kid on the block.  But we keep trying, we rock, we distract, we do everything short of standing on our heads to entertain him so that he would take his bottle, when all else fails, we wait till he falls asleep and then we keep trying.  After all that he still seems to gain weight, which is great, but I just can't comprehend it. Jasiu is special . Period.

He is trying some new solid foods. Among some that we tried are sweet potato, avocado, carrots, apples, pears, bananas. We started out with the Gerber first foods, but I decided to make his own whenever i can, so I bought the Baby Breeza  and am quite happy with it thus far.  Some fruits he's been eating just mashed like mango and bananas and he does seem to like them (for the most part). The most he'll eat is a few teaspoons at a time, not nearly enough to properly feed him yet, but it's a start.

Besides our struggles with feeding life has been great. Jasiu is doing very well heart wise, though he's still on the Enalapril, reflux medicine and his vitamin with iron. He actually takes his medicine without any issues or spit ups and will suck the syringe, but not the bottle. It's quite amusing.

He is almost sitting up independently, and loves to sit in the boppy, his high chair or other sitting toys including the walker recently. He almost never goes in the swing, which we should put it away to get some living room space back. Always has a smile on his face and loves to travel in the car. Since it's still nice out he's been going to church with us, dropping Emily off at Saturday preschool, and to grandmas. He is a very happy baby and when were not feeding, live is good, great even. I can't believe how lucky we are with every day that he gets bigger and stronger we get to enjoy one more day with our two great kids.

Supported Sitter :)

Playing with Emily

Jasiu's new funny face he makes all the time

Sporting his new (first) sneakers



Not so sure about this whole sippy cup thing, but willing to try




New sleeping position :O



"See you in 3 Months"...

These were the words from our Cardiologist on Friday!!!  We feel relief and anxiety... relief that he's doing well enough and that we don't have constant appointments and anxiety because of all the what ifs...

After almost bi weekly cardiology visits and someone with a medical degree looking at Jasiu and evaluating his health constantly, I think I will almost feel doctor withdrawal. I know, I know.. They all say I did great so far with watching him and knowing when something is wrong, but we were lucky and nothing was really wrong yet, so now I'm a little freaked out that I may miss something in the span of 3 months. However, that feeling, I'm told by more experienced heart moms, will never really go away...

Stats from our clinic today ...

• Weight 7.055 kilos (15lbs 8 oz) (5-10%)
• Height 26.5 inches (25-50%)
• Blood pressure 105/61 (right leg), 107/56 (left leg) - good
• Heart function - good
• Valve leaking - minimal
• Things to watch- narrowing aorta due to possible scaring from Norwood surgery

My two biggest concerns going into this appointment were heart (obviously !) and weight.

Heart because he had the higher blood pressure last time on both external reading and echo and there was already some thickening of the heart muscle due to this. Jasiu got Enalapril twice daily and it's helping. Heart function is good and the heart muscle is getting much better as well. Because he gained weight from last time his Enalapril was increased to 0.4ml twice daily. This is really a minimal amount of the medicine and by the time he realizes I squirted it in his mouth, he already swallowed, however he does know it's coming because he just sometimes sees me holding a syringe and already starts squirming.

Weight - by  looking at his numbers and the growth chart, one would think Jasiu looks like a string bean, long and skinny, however in reality, he looks like quite the chunker. This surprised both Dr. H and Asha, our nutritionist. Since his last appointment Jasiu has been NG free, and his eating volume and habits have not changed. he still takes in about 20-24 ounces of fortified breast milk  over the course of 24 hours. Theoretically based on his weight and now activity level, this is almost the bare minimum to sustain him, however he IS growing and putting on weight. He put on a little over a pound in one month, so for a cardiac kid, that is pretty good. The nutritionist was also surprised by the way he looked and said though she's surprised, she has a few kiddos who just don't need that much and still do good and they said he looks "great" so that is music to my ears. I think I have to stop looking at that stupid growth chart and stop comparing him to other kids.  She said we would not recommend pouting anything extra into Jasiu's milk, like oil or additional calorie boosters and just continue to do what we are doing and try to encourage more volume.  So we left the cardiologist office quite happy.

Next was the paediatrician's office for our 6 month check up and vaccines. Now our doctor is a great pediatrician and very well respected in her field, however I'm hearing conflicting messages from the clinic versus her.... She was surprised and discouraged me from giving Jasiu solids or baby food puree's yet as well as putting rice cereal in Jasiu's milk. She said there is more nutrition and calories per ounce in breast milk or formula than in an ounce ob baby food and that he has plenty of time for that food. HOWEVER, I'm of a different opinion. I think he's fine to experiment since he likes it. There is no way to get more milk into him, we try almost around the clock to feed him and he just won't take any more and there is no way we can force him to eat besides the NG and we're NOT going that route. He is doing well  otherwise and received his 6 month vaccines.  Another thing she wants Jasiu to try is sleeping through the night and I should let him. Currently we would feed him every 3-4 hours during the day and at night (midnight feeding and 4 am feeding) . She wants us to stop that and see what time he wakes up. But i think he won't reach his goal for the day and may end up losing weight. So she wants us to try letting him sleep and see us in 6 weeks for follow up. So we will actually have another pediatrician earlier than cardiology.. WOW...

Jsiu, even after a full day at doctor's visits and then going to Wal-Mart with me and Emilka  (for the first time) together was in good spirits. That's my boy :)   I on the other hand was tired and am hoping we don't have to see any doctors until our scheduled appointments. 

Happy 6 Months

Today Jasiu is 6 months old, half a year !!! If you told me on February 25 that we would be here as a family of 4 I would have hesitated to think that far ahead, but here it is.


I didn't even realize until I was at the bank this morning before work and had to put the date on the deposit slip and it hit me that today is Jasiu's half birthday. WOW, I can just keep saying it over and over. So after I left the bank, I actually had tears in my eyes walking to work thinking about this past 6 months and all that such a small little person and our family endured.


I have never even thought about "celebrating" or thinking that 6 months was a big deal, but it is. I am so proud of him and having Jasiu is such a  blessing. He is one of the happiest and most chill 6 month old's I have ever seen. Even Emily was more temperamental than him and she was pretty chill herself. Overall he is doing great, but we will see at our cardio appointment tomorrow. For some reason I have butterflies in my stomach about this one, it may be that we haven't seen the cardio for 4 weeks, or that he'll have an echo, or that he was NG free for that month and we have to weigh in... i don't know, but I really hope it's nothing and he does great tomorrow. We have a jam packed day tomorrow with cardiology appointment in the morning and pediatrician around noon for 6 month vaccines.


Please keep Jasiu in your prayers for a good appointment tomorrow...


HAPPY 6 MONTHS SWEET LITTLE MAN !!!!

Favorite two toys... feet

BIG weekend...

Well, it wasn't so big as in lengthy but it was BIG as in Jasiu was away from the comfort of his home (besides the hospital stays) for entire two nights and days.  It was BIG and made me so nervous, but we did it and Jasiu did GREAT.

We started the weekend on Friday with a not so fun day at Hope hospital getting a swallow study and an upper GI study to see for sure if it's reflux causing Jasiu to refuse to eat more than 2-3 ounces of milk at a time even though he's still quite hungry.  This time I was more prepared and had dressed him in a snap less onsie so that there was no metal to be picked up on an x-ray, I brought my own bottle nipples since Jasiu is not a fan of the ones the hospital uses and brought lots of toys to distract him. He drank the 2 ounces of barium concoction, we placed him on the x ray table and even to an untrained eye one could see the liquid moving out of his stomach and around his esophagus. It did not look comfortable at all. It's final, he has a bad case of reflux and even though he does not throw up anymore, it's reflux is still happening. Personally, I thought all along that the NG was making him throw up even more than the reflux itself. 

The swallow study was good, and Jasiu is for sure not aspirating while taking the bottle and while eating solids so that was ruled out as the reason for his small volume intake.  Which is good news.  Yes you read that right, Jasiu is starting solids. At the suggestion of our speech therapist and GI we started to give him some solids, very little amounts of course but he is loving it and has no problems with it. The solids should help in keeping his milk and food in general on the bottom of his stomach so it reduces the tendency for reflux.  At first he was not so sure about this whole spoon thing, but now he shakes with excitement at the sight of a spoon. This is very good for us however baby food solids do not have much calories and since his milk/formula intake is almost minimal  on average 20-24 ounces a day he needs as much nutrition and calories as can get, so I will be contacting our nutritionist this week to see if there are any natural ways to enhance his caloric intake.  Weight gain has been increasing but very very slowly so I hope they allow us to keep it out and figure out a way to feed him with foods with the biggest nutritional bang.

Now for our weekend... we took the kids to our uncles summer house at Bass Lake, Indiana for a test run to see how Jasiu would do outside of the safe heaven of our house. It's not the most exciting vacation spot, but it's close to home in case of emergency, we trust that it's clean, it was only filled with close family who are all healthy at the time, we had ample freezer space for Jasiu's breast milk and we love going there because it's away from the house and a place to relax for a few days on a budget. We left after the evening bottle and Jasiu passed out as soon as we hit the highway and slept all the way through the whole two hours car ride and until we unpacked the car and got the midnight bottle ready once he took that, he continued to sleep just as he would at home and did great in the pack and play.  He slept great the entire weekend just as he did at home and ate well all day Saturday and not so well on Sunday.  Jasiu had his first pontoon ride on the lake as well and liked all of it except the sun. He's not a fan of the sun glaring in his eyes but we put up the top and had shade on half of the pontoon and that's were we were hanging out.  I'm sure he loved the fresh air and walks along the lake as well as all the attention of mom and dad since we are now both at work and don't get to spend much time with the kids during the day.

I was nervous half the time to see how he would react to a little more commotion and excitement, the car ride, etc and he did fine. But it was still relaxing and we had fun. I packed all the possible gear I needed, meds, thermometer, stethoscope, etc except the pulse ox machine... I realized half way there that I forgot it. Grant it he does not need it anymore, our cardiologist said that I don't have to check it daily or at all really, but I'm hanging on to it for dear life. I still check him once in a while for my own sanity's sake and he's doing well. You can actually see him have a nice pinkish color as a normal baby and he's in such good spirits lately no one would even know he was sick if that scar didn't peak out from the top of his onsie below his chin. His quality of life is great thus far and we love it. We love getting some normalcy back and being able to take him places, including church and family's houses.

Next big gathering for Jasiu.... Emily's 3rd Birthday Party this weekend!!

Emily getting ready for the water

First pontoon ride for Jasiu

Hanging out on the peer

with big sis, he looks like such a chubster here for his little 15 pound body

the one family pic of the weekend

play time with Emily

she loves to tickle him

Big Changes

There were many BIG changes in our lives this week.  2 of them are pretty major and  have their positives and negatives and were dealing with both.

1.       Jasiu has been off of the NG since July 30^th

2.       I’m back at work since August 1^st

Jasiu –

 At our last appointment as I explained we were given the green light to remove the tube and let Jasiu show us what he can do with the bottle. His minimum requirement by cardiology was 16-17 ounces in a 24 hour period.  Last tube feeding was just before midnight on Friday and out goes the tube !!! First feeding on Saturday was around 6 am and Jasiu did his usual 2 ounces. I was happy but not thrilled… He continued to “sip” this entire day at a rate of 1.5 to 2 ounces at a time for a grand total of 17.5 ounces... Yejjjj we met the goal, but I’m still not happy with the “snacking” that is going on. The next day Jasiu takes in 20 ounces total, an improvement in total feeds and somewhat in the snacking… the next were back down to 18.5 and Tuesday to 20… So it’s an uphill battle. We are trying to refrain from feeding him every hour because he won’t learn true hunger and that the bottle will satisfy it but learn to continue to “snack” which is not healthy for him in the long run.  He does his best eating in his sleep which for a baby that is pretty normal, however at the unconscious state, again, he’s not realizing what is happening and were back to snacking. HOWEVER, I am more than thrilled that he is able to take in as much as he is. There is only a small issue here, at the rate he is going, not taking in more than 20 ounces of his already 24 calorie fortified breast milk, he is NOT GAINING WEIGHT. As any Heart mom knows, this is a BIG deal. Next to heart issues, GI and weight are the close second . He has not lost weight, but not gained any in over a week either.  We are working on picking up the volume or maybe cardiology will suggest picking up the calories per ounce we will see what they say at our next appointment. My biggest fear is that they will tell us to put the tube back in and that will be terrible for all parties involved and we start the vicious cycle once again.

 Another great side effect of no tube, is there is also no throwing up. Since Jasiu is not throwing up, we were also OK’d by cardiology to discontinue as a trial run the stomach medicines, so no more Prevacid and Zantek for the last 4 days either. Since we discontinued the meds and took out the tube, I have not seen any signs of reflux yet which I firmly believed all along was caused by the NG.  Jasiu is still taking the Enalapril for his blood pressure, but it’s such a small amount that by the time he realized he was given meds, Jasiu already swallowed it with barely gagging at all. I hope that his BP will continue to stay down and he won’t need any larger dosages of that medicine. Our great pharmacist made it banana flavor so it’s helping a little bit J .

This first part was written on Wednesday, today is Saturday, and we still have a snacker on our hands. No more than 2.5 ounces will go in at one time L. We also saw Speech therapist on Friday and they think that he still does have reflux, just silent reflux where we don’t see him actually throw up but has wet burps and is starting to make a cranky face when he does burp. This is not good either so we were suggested to do an upper GI test and that is next Friday.  

In the 20 weeks anticipating the Jasiu’s birth and knowing that this journey will be a hard one, never even for a split second did I think or know that feeding will be one of our worst challenges. You can not teach someone to eat nor can you force someone to eat . As every doctor tells us, there is no magic pill we can give him or know why he refuses to take in larger amounts or even small amounts more often. The NG or even the G tube  should be temporary solutions while  the baby somehow “gets it” and I really wish Jasiu would do this soon for his sake, so we don’t have to put the NG back and for my sake so I don’t pull out what is left of my hair.

We are all praying that this trend continues uphill and as we all know that you don’t just run the marathon in on e day, this will require a lot of practice and patience which we must all deal with, in “we” I mean ME, and my husband , my mother in law and my mom.  This brings us to the second BIG change…

Back at work -

As of Monday August 1, (actually great timing work wise because it’s the beginning of our fiscal year) I am a WORKING mother.  I have been working after Emily was born  and though that transition was not easy, it’s SOOOOO much harder this time around.  My husband on Mondays, mother-in-law on Tuesdays and Wednesdays and my mom on Thursdays are all capable of taking care of Jasiu and Emilka but it’s still hard to let go. I am a completely crazy control freak and I hate not knowing what is going on over there.  Grant it they have succumbed to writing down a lot for me, like the time he’s feeding, how much and how many wet diapers. I don’t expect them to tell me exactly how much he slept or cried or played, etc.. For the 5 months I was with him, I was tracking most of this to try to make sense of it all or try to see a trend, I will have to let go of this. The only good thing about work being so busy as it is, is that time flies very quickly and though I feel like I have not enough time to get everything done there, I feel like I get to see the kids quicker too.  Since I’m back , the  “pump” is going back.  I tried pumping twice a day, but it’s harder than I thought and with 4 freezers full of BM, Jasiu is more than well taken care of.  If he was nursing it would be much easier, however before and after work I have to be away from him to do it so that is an extra 15-20 minutes that I lose with the kids. So I decided to quit. As sad as I am about it, it’s like a weight lifted off of my shoulders and I am starting to feel much better about my decision.

Back to Jasiu –

He is also a very happy baby lately. He is sleeping in his own room, though we miss him in our bedroom 2 feet away. We are doing belly time and he can flip from his belly to back  but not back to belly yet. He’s close but not yet. Today he got really close, see the pics below. We also pulled out the Extesaucer for play time and he loves it for a little but is still wobbly in it. What a big difference two surgeries make. Emily was in the saucer at 4 months old already, but we know he’ll get there also. Jasiu is also experimenting with solids. I don't have a pic of the first time because it was with the speech therapist and I was not ready with the camera at the hospital on Friday, but the first time at home was with me. It's quite funny to see his expressions but the good part is that he was not gagging at the taste and texture and he can swallow it. He must have had two or three spoonfuls total in very very small quantities, more like dips on the spoon, but this is a major milestone in our lives. I hope he grows to like apple sauce and the many foods we will introduce as time goes on.  The face expressions are priceless.



First time on this side of the high chair



First food: apple sauce

I'm not sure how yummy he knows this is

play time in big crib

Play time in activity center

those feet touch the bottom

belly time

with big sister



almost there



Quick Cardio update

Today we had a follow up cardio appointment with Jasiu because last weeks, post Glenn echo, confirmed that his blood pressure was just way too high and his heart was already slightly enlarged. So Dr. H.  prescribed Enalarpril but only 0.3ml twice a day. That is half the dose for his weight, but they just wanted to try it and recheck a week later. So today, a week later, his blood pressure was perfect. Being the worrier that I am, I asked them to do it again on the other leg, just to make sure the reading was good and it wasn't a fluke and the nurse did just that and it was still GOOD. :) Makes mommy much happier. This means that we do not have to up the dosage and keep it as is until we have another echo in 3 weeks to make sure all is well and BP still stays good. Basically we will let him grow out of it as his weight increases the dosage is smaller and smaller per kilo. Speaking of Kilos, Jasiu is up to 6.41kilos so its just over 14 pounds. He has been stuck here for a while but as we try to get his reflux and throwing up under control as well as get off of the NG, we just hope to maintain this weight and not decrease.

Speech Therapy and Developmental Therapy was also present this week and they said Jasiu is actually doing GREAT. He has a killer suck just is quite volume sensitive so therefore will take smaller amounts until the stomach puts more pressure on the esophagus and cause reflux. This week we will try something new and put cereal in his milk to thicken it up with hopes that the extra solid will settle down in the stomach and not want to come up as easily. Cardio also gave the green light to take out his NG and see how much Jasiu will take orally and also gave us a bare minimum of ounces he needs to take in order to stay hydrated. I think her number is a little inflated, but we will go with it.This makes me quite happy as I totally think he can do it, just seems to be irritated by the reflux and his smart little brain knows the more he eats the worse he feels. I hate just showing it down the NG because I'm sure it's not comfortable for him either. We will see how this trial goes.  Cardio also gave us a green light for tummy time and the developmental therapist said Jasiu did great. Held up his head for almost 3 minutes and with no crying.  Pre Glenn Tummy time was not his favorite activity. He will also pull himself up to sitting position if you hold his hands from a propped up on a pillow position. He is showing that he is a really strong little warrior. We also pulled out the bumbo and Jasiu loves "sitting" independently. Don't mind the pink bumbo, Jasiu obviously has an older SISTER and many hand me downs are pink. Good thing he doesn't know the difference yet.  Next step will be to take out the jumpy activity center for him and see how he likes it, though OT said that those things don't do much for the child's development and still say tummy time and tumbling on a floor mat does much more for muscle straightening.

Monday I go back to work and all this week I have been trying to soak up as much of my kiddos as possible. I will miss them terribly, good thing they will be in good hands when I'm gone. 

Now for a few fun pictures of the kids:

First time in Bumbo

Emily testing it out for Jasiu's safety

Pardon the bed head on Emily (lol), it was Saturday morning :)

My little Girl is growing up so quickly

Jasiu is growing and the bear is shrinking - 5 months old

Weaning trial #1... (& cardio update)

FAILED !!! I go back to work August 1 (one week from now)...  Jasiu is still dependent on the NG. One of grandmas' and our worries is STILL the NG. Both Grandmas are very worried that they won't be able to handle it but are willing to try.  Here is what happened...


We want to try the Graz method, which was successful for many people and I know a few of them, overall almost 90% success rate. To get more info on this click  here . Basically you must introduce hunger to babies and kids so that they associate their satisfaction with eating orally and not through the tube. They must present hunger cues and that is when you feed them, not around the clock through the tube. Jasiu pulled out his NG on Sunday so we thought, lets try to see how much he will take and how it goes... Let's just say he is either not hungry at all or just happier hungry than full. He would take half an ounce to an ounce and then be completely satisfied. The most he took at once was 2 ounces and once he burped that was the end of it. So we played the game of feed the baby every two hours or so for 2 days. I did not mind because he was taking at least some but he could sleep for 5 hours on that 2 ounces and that scared me mostly because he needs ood nutrition to grow and recover from surgery. I was armed with a baby scale to track his weight and a food scale to keep track of how much he peed so that we know how much fluid he still has in him to prevent dehydration.  It didn't go horrible but not well either. When hungry he will show all signs of hunger and I would feed him, burp and then feeding was over... tried placing the bottle in his mouth again and it was like placing hot coal in his mouth. He turned his head away, flipped his arms out at me and if I kept offering the bottle over and over he would cry from aggravation. He did and still does his best eating in his sleep. He will sometimes take over 2 ounces until he notices that he's eating and wakes up.. then it's over and won't take another sip.  I am pretty sure the cause of this is reflux partly caused by the NG so we will be starting Zantec in addition to the Prevacid that he is already on. Hopefully it helps.  So on Wednesday morning after 12 hours of no wet diapers and no improvement in intake, I placed the NG back in. Sad day... but Jasiu is just not ready yet and I realized that is OK.  I stumbled upon another blog of a mommy with a baby with "EB" and it broke my heart to see how much her little guy had to suffer and seeing other little kiddos unfortunately not doing well always grounds me because I have SO MUCH TO BE THANKFUL FOR.  That little NG is awful, but it is still helping Jasiu so we will stick with it until he can eat on his own. After speaking with the cardiologist today we will develop a plan to wean off of it once everything else is under control. I was almost ready to put my foot down at the cardiology office if they were not going to address the tube issue with us but they braught it up this time and I'm happy that they are aware it's an issue.


Besides when we try to feed him Jasiu is quite a happy camper.  He smiles constantly, coos, babbles and loves his fingers (I wish he got calories from them instead of making himself gag.. he would be one fatty). He loves to twist around on our bed and in his play pen and is about an inch away from flipping onto his belly. Jasiu already is on his sides and even has his head off of the matres and just needs just a little bit more strength to do it. I think if he didn't have his Glenn he would have been rolling back and forth already. The cardiologist was impressed that he's that active just 4 weeks post Glenn. Jasiu also figured out he has feet and hands... he can look at them for quite some time and when we put red socks on his feet, he's even more amazed. He also likes his toys now and reaches for things and even sits supported, in fact that seems to be his favorite activity sitting and watching TV. My little couch potato :)


Today was his post op cardio visit and we had an echo as I expected. 5 months into this journey and I still get so nervous before these things.My sister, who joined me at the appointment today (hopefully jokingly)  thinks I should be medicated for anxiety. It is so nerve racking especially because I learned to read the techs doing the echo, who by the way can not comment on anything they see, that is the doctor's job. Quite a few times I saw him shake his head and make a sort of worried look on his face as if he wasn't expecting to see something he saw. So I was sitting on pins and needles this entire time.  He was able to get GREAT pictures because Jasiu, if there was an award for the best baby during an echo, would have gotten the trophy. He was quite tired already and fell asleep on the table watching cartoons (back to the couch potato comment) holding my hands and me shhhhishing him. He was just perfect for the echo though I don't want to jinx it for when he's older.


So we waited for the doctor to read the echo and then we spoke about the results... Basically there are two leaky valves and the high blood pressure reading from the cuff was also confirmed with the echo. We are hoping the high BP is just transient while Jasiu heals from the Glenn and it will pass, in the meantime we will be on Enalapril just to be safe. In addition they want blood work to make sure kidney function is good and we did that right after the cardio visit at the hospital. We can lower the dose of the Lasix and as stated before we will add Zantec for reflux. All my questions were answered, however the weaning plan must wait until the bp is under control and we are off of the Lasix. We go back in one week to check the bp. In addition Jasiu has mild arrhythmia, his little heart skips a heartbeat here and hhere but Dr. H wasn't too concerned just yet. It's just another thing they have to keep an eye out on.

Right after the cardio we went to the lab to get the blood work done. I was happy about the fact that it only took one prick to get the blood . Jasiu took it like a champ and as soon as I picked him up he stopped crying. However, as I was writing this entry, I got a call from the hospital that the sample they took is no good because apparently it started to clump and we have to go back for another blood draw. I am NOT a happy camper...I am going today so that Jasiu has a relaxing day tomorrow and not get pricked tomorrow as well.


We are also clear to start taking him places outside the home, but to be aware of our surroundings to make sure he doesn't get sick. If Jasiu is not crabby tomorrow from today's blood work we will go to a birthday party tomorrow if not mommy and Jasiu are taying home.


Please pray that his blood pressure stabilizes at a lower more acceptable range and that he can get nice and strong so he can starting eating on his own.

Here are a few pictures of my tubeless little munchkin: :)




In his own Room



Daily weigh in !

Really Quick Update

We are not 100% just yet... but we have SMILES all around :D

My two sweet hearts

Jasiu now smiles quite often and is ok in the bouncy chair or swing for a while.. this is much progress. He just needs more time to heal and I need to give it to him. He is so strong and my hero.