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 :(