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.

One week post Glenn...

We are one full week post Glenn and I still don't see this promised land of milk and honey yet... though it may be too soon I want it now, I never was a patient person...

Anyways here is where we are...

Jasiu is still quite cranky.. though we see a smile here and there, he still doesn't babble and coo quite as he did before. He's mostly either quiet and sleeping or way on the opposite side crying hysterically with very little in between. The last few days I felt like the colic is back, however now it's every two hours instead of the 7-11 time frame. We thought it was pain, however that doesn't work, not Tylenol, not Motrin or even Lortab! The only thing that calms him down is wearing himself down to sleep. I also thought it was the headaches, but I think that the pain meds would take care of it. Mostly the screaming doesn't look like a pain cry, but a cranky and whiny cry and he's just so used to it from the hospital that he can't stop himself... I'm beside myself and don't know what is really causing it just speculating. Even a diaper change which before was no big deal is a scream fest.  It's quite frustrating especially because of the crying he does poorly with his feeds. Ohh how far we came from the first time he ate after the Glenn (the whole bottle for the first time ever!) to almost completely nothing.. we get an ounce here and there, but the bottle is interfering with his crying so he refuses to eat. The positive note here is that until this morning he has not thrown up in a week as well and has a large appetite but it's for the tube ( I think he threw up only because he was crying so much while I was feeding him through the tube)... He wakes up for food every 3 hours when he used to eat every 4 so we increased to 4.5 ounces per feed. That seemed to work but because we have a 2oz tube it takes a few sips from the bottle to the tube to finish. Since we are tube feeding him and the 4.5 oz, he seemed to pick up on he scale I am pretty sure I just hope my arm muscles will show it.  We go the the pediatrician this week so we will see.  He still was not in the swing yet because he screams in it, I have not been able to sit down when he's awake because the person holding him can not sit and must stand and rock him. He has not been on his play mat yet, again because at the second we put him down he screams and wants to be on someones hands.

It's been a tough week and I am still recuperating mentally and physically and I'm not even the one that had the surgery. I know he will come around it just seems like it was faster from before because we spent 3 weeks in the hospital post surgery and here we were back in 3 days. I know it has to be worse before it can get better and I know everyone keeps telling me he will eat... but WHEN !!! I want my Jasiu's pre Glenn attitude back.. He came along so far from the Norwood and I feel like we are right back where we started. I really hope it doesn't take 3 months to get there, by then the summer will be over and RSV season upon us and we'll be stuck at home again... :( Here I thought that Jasiu's first outing will be to my cousin's baby  girl's Baptism since it's over two weeks post Glenn, but I'm not so sure that we can make such a large comeback in a week... but secretly hoping that he will.. So yet again, one more party we will probably attend separately. ..

All that said though... compared to the alternative I will take this any minute. After every melt down, I keep telling myself he is here with us, thriving (by means of NG, but thriving) and generally moving in the right direction health wise so we are BLESSED to be here post Glenn no matter how rough the road to recovery will be. One thing for sure, it's a relief to be here and not to have a planned surgery hanging over our heads for at least a year. That in itself is a good feeling as for the rest we will take it day by day, hour by hour.. what else can we do?

We are also blessed that we had a holiday with Jasiu at HOME. Way too many parents and childeren have to spend it in the confinds of a hospital room so I am done complaining for now.  Here are a few pictures of the kids. Jasiu is sleeping because that's the only good picture I could take where he wasn't crying...

Please say a prayer for Jasiu and for his speedy recovery, especially that he begins to like his bottle and then solid foods. I know God had a plan for him, I just have a really tough time seeing why he can't just eat and be healthy now.

Happy 4th Jasiu !



Cousins enjoying ice cream on a HOT 4th of July (Emily's in the middle)




Can't get one to stop the bottle and one to take it.. *sigh*



Home Sweet Home

Yesterday, Thursday June 30th, will be another date forever engraved in my mind. It is the day we came home from the Glenn, just a measly 4days and 3 nights after a major open heart surgery. I am still amazed at how well our little wonder boy has recovered and handled the whole situation.


On Thursday morning Jasiu woke up with a smile, ate some of his milk by bottle and emptied his bowels Jasiu style (TMI... I know) all while watching Mickey's Club House and waiting happily for rounds.  He was smiling, cooing and showing off his high sats at around 81, which is good based on his standards). The doctors were amazed on how well he was doing and I kept asking them if he is really and for sure ready to go home, the last thing I want is to be back a few days later because they discharged us too soon. (It's still early and I'm keeping my fingers crossed but so far so good).  His discharge echo, x-ray and EKG all came good. Heart function did show a little lower but I was assured that is to be expected. My son is a rock star!!!! He has many amazing heart buddies whose footsteps he is following which is great. These kids are just so strong beyond belief. Everything they go through and still they are pretty happy kids. So we were ordered to discharge around 9 am but Jasiu fell asleep from tiring our with all the commotion of rounds and everything that we waited about 2 more hours until he woke up to start removing the leads, pulse ox and his IV line. Once fee of all the bondage he was a happy camper and glad to be back in his car seat and of course passed out again on the way home, he loves the car. 


Jasiu is home on 3 medicines, Lasix- to help his kidneys so he can pee easier and his heart doesn't have to work so hard, Prevacid - to help with his reflux and Poly Vi Sol- nasty tasting (thank God for NG or he'd never take it) type of multivitamin. Additionally he is taking pain medicines still and we can wean him off of that as soon as he shows signs that he is much more comfortable. Finally, were still on the NG tube :( The two stellar performances with the bottle were a slight fluke, though they showed that he CAN eat, just is not ready to. Once the pain goes away we will work on getting him to take more by bottle and say bye bye to the NG.. at which point he will have to take the Poly Vi by mouth .. yuck :(


We had a WONDERFUL and RESTFUL night. Jasiu was not attached to any machines, looked wonderful and VERY comfortable in his own bassinet. However I did have the Angel Care monitor under his mattress and the video monitor on all night as well (for my sanity of course). He slept for almost 6 hours straight, ate and is back sleeping. I also missed my bed and had a good nights rest as well. We were home under one roof and that was a wonderful feeling all in itself. Wow ...how such small things are the world to us now, we would have never even thought about that a year ago that it was such a blessing to have your kids and your entire family together and not have to split your time between hospital and home. Way too many families have to move and be separated from their other kids while the heart baby is getting treatment and I feel for those families. I am so blessed to have our hospital and great doctors right here 15 minutes away from my home. Thank you Advocate Hope Children's Hospital.


Now I go back to reality and house work for one more month and back to work in ONE month. I am sad and can't wait all at once. It will be a challenge but I can't wait ...




From This ....





to THIS in just 4 days !!!


 






Good by for a while !!!