Saturday, August 27, 2011

"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. 

Thursday, August 25, 2011

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...


Favorite two toys... feet

Tuesday, August 16, 2011

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

Saturday, August 6, 2011

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 30th
2.       I’m back at work since August 1st
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