Cardiology update...

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

• Weight good-10 pounds 12 ounces
• Blood pressure also good
• Sats decent at 70-75
• Occupational therapy great
• Speech therapy- not so great - swallow study next week
• Echo - not so good but as expected

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

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

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

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.

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:

Emilka loves to cuddle with Jasiu

Emilka and Ola

loves to sleep like this

It was supposed to be a family photo...

...but Emilka passed out brfore we could :)

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.



First Belly time ever - 8 weeks old exactly !



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.

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.

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:

• 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

I also got to see Amanda at Hope whose rock star son, Austin, had his Glenn surgery the day before on Thursday. Austin is doing great and is already on the floor and out of the PSHU. We know that post Glenn babies recover quickly, but Austin is just phenomenal.  Jasiu needs to have a baby talk with that kid.

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.

Good Days...



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.

Emily Holding John for first time

Such a big sister



Tube Free for just a little while !

PS Sorry but haven't figured out how to rotate pictures here yet :(

Pediatric visit #1 & Spoiled Rotten

Today we had our first pediatric visit with Dr.Collins. She was referred to us by many PSHU nurses and doctors, she's also a specialist in infectious disease and cares for many kids with special hearts just like JJ's. Since Dr. Collins will be caring for John, I wanted to have one less place to go to for this busy mama so I decided to transfer Emily to her as well. With the help of grandma we took both kids in. It was one of the longest visits because she needed to get all the history on both kids. Funny how John is one month old and has a longer history than his 2 1/2 year old sister. Anyways here's the lowdown:

John weighs a whopping 9 pounds and 5 ounces and is 21 3/4 inches long and is average right on target for his age group. Lungs clear heart rate good, etc. He got his Hep B vaccine and didn't even flinch from his sleep in my lap. The nurse joked that after all he's been through this is a walk in the park for him. Also he will not get his Synergies shot since the flu season ends officially in March and today is the 30th. Overall John did well with minimal crying as he spent most of the time in my arms, but I will get to that later in the post.

Emily weighs 32 pounds and is 38 inches tall so that puts her at the above average for height and average for weight. She did phenomenal compared to our old pediatrician, she stepped on the scale, allowed the doctor to look into her ears and throat and do all the other things the physical required... until the nurse with the shots and nurse for the blood drawing came in.  At first Emily had no idea what was going to happen so she sat on grandmas lap and was fine, when her finger was pricked, blood collected and 3 separate shots put into her arms SHE LOST IT !!!!! I mean kicking and screaming, all while I still have a month old to console because he doesn't like the car seat if it's not in the car and moving.  So grandma took John and I took Emily in my arms and we were headed home. She cried the entire way home, through out her lunch (while eating) and through her nap. She slept and woke up crying, slept some more and then woke up crying AGAIN ! She cried from the time of the shots (around noon) to at least 5:30 pm. 

The doctor also did a small "physical" on me with another post pardum depression questionnaire on how i feel about life and if I've been crying, feel like things are my fault and such. I answered as truthfully as I could but realizing I dont' want to sound like a basket case on paper. Than she asks if I get at least 6 hours of sleep during 42 hour period. I wanted to laugh in her face. If I get 4 total and not consecutive I'm lucky.  Anyways I think she backed off and went to the next item on her agenda.

Now to the spoiled part. John will be one spoiled baby and he for sure knows it. This child as most could spend the entire 24 hours in my arms, sleeping, eating and all other baby actions at one month old.  I'm sure he already caught on that as soon as he peeps we rush and pick him up and he goes soundly back to sleep.  He doesn't just want to be held, he needs to be rocked shading up and not sitting... he knows when you're sitting. It's well deserved as he wasn't held for the first 3 weeks of his life, but this mama now has her hands full, literally. I have learned to make his bottle, dispense medicine, eat, wash my one free hand much much more all one handed. So by the time that this kiddo will know how to self soothe, I will have some major biceps, considering his rapid weight gain and much leaner hips and behind ( the rocking and walking back and forth). Now I wish there was a way to work in an ab routine and I would be all set. For some reason the weight has redistributed and even though the scale says close to pre baby weight, the mirror and clothes say another :-( . I did figure out that once he does fall asleep he needs to be swaddled and placed in the crib or on the bed so that it feels as tight as in mama's arms. This works about 50% of the time, the other 50% the moment I put him down, he realized hes not in the arms and starts crying and the game begins all over again. I love this little munchkin but when you got one on the arms and one hanging on to your leg (Emily) things can get a little hectic.  Especially since I was used to Emily, sitting nicely in her bouncy chair from the beginning and looking at the entire world. I could get a lot done that way, but nope, John does NOT like the bouncy.

Tomorrow, another cardio appointment and hopefully rest.  

Firs Cardio Appointment

Today John and I got to leave the house TOGETHER along with Joe but only because we were heading to the cardiologist appointment. This being our first trip outside of the home I had to prepare for departure and get the diaper bag ready. Being the person that I am, I packed everything but the kitchen sink. Our diaper bag had a few extraordinary items like a stethoscope, syringes and what I call our son's instruction manual. This is a binder of documents I have from discharge, cardiology, medicines, dietitian, etc. It consists of his daily medicine schedule, food chart of intake and output and others. Of course, the doctor and nurses only want to see about 10% of the contents and mostly want to see how John is doing at home overall and not hour by hour.

Because of Joe's need for punctuality we were on time despite an unexpected outfit change and sponge bath since Jasiu decides he wants to puke. This was partly because I accidentally flipped his but above his stomach while placing him in a bouncy seat which of course warrants a puke from this guy. Also as soon as we walked in 4 others walked in behind us, making me so glad Joe likes to be on time since we would have been waiting much longer had we left a few minutes later.

The dietitian and the cardiologist both love that John is putting on so much weight, almost an ounce a day!!! They increased his intake to 75 mls per feed and decreased the Lasix dosage. No echos, ekg;s or x-rays today so not much else excitement happened. The doc congratulated Joe and me for graduating the first week home relatively well and without any 2am pages to the staff. We also were reassured that just because this baby is a cardio kid, doesn't mean that all other "regular baby stuff" can and probably will happen such as gas, colic, constipation. We suspect Jasiu is constipated because of his grunting before a bowel movement and possibly colic as almost on the hour 9pm-11 he has crying spells on and off with little or no consoling him. Again, this baby, we were told, was to cry minimally. Apparently Jasiu skipped that chapter in the HLHS guidebook but seemed to cruise through everything else because his progress has been remarkable.  The only other thing we have to work on is still feeds and we were go given the green light to increase his bottle attempts to as much as he would tolerate as opposed to strictly 15-20 mls per feed. We need to look at him and make sure he's not stressed and doing well and see how much he tolerates the rest through NG.

I am now working on finding a nice professional photographer to come into the house and take baby photos of Jasiu because he may have deeper complexes down the road once he sees that we have a 20x18 poster shot of Emily on the wall and not him. So I need to coordinate the photographer and home nurse, which happened to be a friend, at the same time in our house so that we can take out the NG for photos and I can be supervised putting it back in. I'm sure JJ will appreciate that we take pictures of him without the "mustache".

So now that he's progressing nicely we keep praying for more success with feeds so Jasiu can be nice and plump for Dr. Illbawi for his second surgery.
Thanks everyone for the love and support, Jasiu sends kisses to all !

Just the 4 of us ...

So this past weekend was the first weekend of just me Joe and our TWO kids spending some quality time together . Its still a little weird to say, "I have two kids" but it was weird when Emily was born to even say I have one.It was quite uneventful and in our new normal "uneventful " is a good thing, just ask any heart mom. John continues to do good though we noticed he was making grunt noises like a 40 year old man and was quite irritable since Friday so my mommy gut was telling me that it had to do with his stomach. As per John's cardiologists and dietitian, yes he already has a dietitian, he is on a 24 calorie diet of fortified breast milk with Enfamil to boost up the breast milk calories. I think the Enfamil is what is not agreeing with him so I did a minor test and stopped giving him fortified milk and purely my own breast milk since 3 pm yesterday afternoon. From that point, John was like a different baby, slept soundly and was only making grunting noises when stretching, not constantly. Today I will go back to the fortified milk and see if it starts again. If it does I will bring this up with both the cardiologists and dietitian as the reason John was on an increased calorie diet is because they want to fatten him up for the next surgery. If I'm right we will probably have to switch formula or go another route. 


Additionally we gave John his second bath yesterday and he tolerated it well, better than the first time. He actually enjoyed it, which is great news as I don't have to worry about him turning blue from crying so much in the tub. Emily cried in the bath tub until she was almost 3 months old.


On another good note, I sort of fell into a routine, got used to the meds and tube feeding and I think I'm ready to face people / family, of course if they are HEALTHY and ANTIBACTERIAL themselves upon entering our home. We have become Obsessive Compulsive Disorder on this topic and I don't care what anyone says. For a few months until the Glenn we have to live in sort of a bubble to make sure John stays healthy.  It also depends if John continues to do well. As a fellow heart mom said operation bubble is a Go. See her blog for more details. It's just what we have to do for the best interest of our kids.


Some pics of us lounging around...

By the way, mom gets no lounging pictures as she doesn't have time to do this between pumping, cleaning feeding supplies and picking up after everyone in the house.