Wednesday, March 30, 2011

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.  

Friday, March 25, 2011

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 !

Monday, March 21, 2011

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. 

Thursday, March 17, 2011

Home Sweet Home

March 16, 2011 - 1st Day home

They finally meet

First picture of all 4 of us !

2 weeks and 2 days passed by since John's Norwood procedure (for those non-heart parents, its the first open heart surgery) and 20 days old and the doctors were confident that we could take him home. They all agreed he has recovered nicely and I'm competent enough to properly care for him. This baby comes with a special instruction manual and I spent two full days and nights learning how to do it all. I now know how to  check NG tube placement, how to place the tube in, how to administer 5 types of medications, how to begin teaching my son to eat by bottle and feed by NG tube, how to work a pulse oximiter machine, etc. It's not an easy job but one I will never complain about doing. I'm just glad to be able to hold him, which he took to fondly I may add, whether it's me or Joe, this baby LOVES to sleep on our arms. We love it too, however he did spend the entire night in his mini crib/ bassinet in our room sleeping, minus the time I had to wake him up to feed and change the diaper.  It was also nice to spend the night in my own bed as opposed to the very nice to have but uncomfortable to sleep on futon that the hospital has in the kid's rooms for parents who spend the night. 

Emily was quite happy as well. She got to meet her little brother the day before on Tuesday in the hospital. Her innocence looked past the beeping machines, feeding tube and the IV line on his head and was SO happy to finally see this baby brother we were all talking about.  It was amazing to see her smile and be so excited.  However the next day when we brought him home, though she was also happy and excited, she was also more needy, wanting her paci for more than sleeping and wanted to keep forcing her baby brother to take his paci, which he doesn't take unless he's hungry.  Today, the second day in, she's a little better and that is to be expected. I know it was going to be hard going from one to two children, but between the fortifying, pumping, feeding, administering meds and getting the baby to sleep, leaves little time for Emily time with mommy, so I don't blame her for her behavior and only wish it gets better for all four of us. 

Back to John, he has done well at home for the first 24 hours and so have Joe and I.  We got decent amount of sleep and the house is not a complete mess yet, I have much more to do in order to organize our new normal routine but baby steps is our theme lately.  I prepare a 24 hour chart that points out each feeding time, medicine time, wet diaper count, vomit time, pulse ox spot check and a space for notes.  All this will be on a quiz later when the home nurse comes and visits 3 times a week.  I didn't pass my first quiz today because I did not have the exact amount of wet/soiled diapers John has had since we came home but I will not be unprepared again !!! I am also working on putting together John's binder of information we have received including the paperwork from the hospital, nurses, doctor visits, medications, etc.

We are pretty much sequestered at home with John as he has strict orders from ALL cardiologists on his team to stay away from public (germ infested) places and from allowing sick visitors. As we became OCD now, we purchased loads of hand soap and gallons of antibacterial hand sanitizers for us and foaming fun ones for Emily.  It just so happens that Emily just began to cough and have a sniffly nose since yesterday and I have to call the pediatrician to make sure I don't have to come in with her. I was ok'd to take John for limited walks around the neighborhood and on the back yard when it gets nicer outside. We do have a cardiologist appointment next Thursday and of course that is a necessary outing. 

For now we will try to work on a routine or "organized chaos" as most heart moms call it and hope I don't end up medicated as well as my sister likes to call it.

We are also still praying and ask for your prayers that he continues to do well, grow and prepare for the next surgery. God has proven to be good thus far and we continue to ask for strength for John and for our entire supportive family who is on this journey with us.

Monday, March 14, 2011

We are on a regular floor!!!! Hopefully home in next few days, we keep praying for him to keep doing well. .

Sunday, March 13, 2011

So far more good News !!!

As of 6:20 pm today John is off of oxygen.

Since he got extubated he has been on high flow oxygen and started on 4 liters and 70% flow as well as a nitrix machine that was supporting his lung function.  As in Johns true nature since the beginning, he took things at his own pace and was quite sensitive to changes so he was weaned off of the nitirx and oxygen VERY slowly. If  they moved him down by more than 5% at a time his sats began to lower and he began breathing much faster. So the doctors took things slowly and he lost the nitirx machine on Friday afternoon and regular flow oxygen by Saturday night. Today they did some test runs on room air without the oxygen and he was desating again so they lowered the oxygen to 1 liter, than .5 liters and only 20 %  and then finally turned it off to see if he would tolerate it. and he did. We called tonight and he did great the nurse told us. Hopefully things continue to go as planned and the cannulas will not have to go in again.

Additionally, since Saturday afternoon, John was on step down/ regular floor status, meaning he's getting regular nursing care even though he's still in PSHU. The only reason he stayed in PSHU over the weekend is because they don't transfer patients on the weekend. So he was upstairs on 3 for this weekend.  Tomorrow John takes a wagon ride to the second floor they tell me. I can't wait to be there to see him moved.

Finally, I heard the D word this weekend --> DISCHARGE. As I told all the nurses and doctors, this seems much too soon. On Tuesday it will only be 2 weeks since his most complex of the 3 open heart surgeries he has to endure. I know he's doing really well and the doctors know what they are doing and I trust them completely, but we were prepared for 4-5 week recovery.  I'm really proud of my baby for being so strong, now I have to be just as strong to take care of him. We had nurses take care of him 24/7 because we weren't able to and I'm starting to question my own abilities. I was assured that the nursing staff on the 2nd floor will teach me everything I need to know on how to take care of my fragile heart baby, but taking him home and taking Emily home are two different things. Sure we were scared to bring her home but for completely different reasons, we were first time parents but of a perfectly healthy little baby, fragile- yes, but still pretty resilient.  Anyways, I was also assured that my scared feelings are completely normal and my instinct will take over, John was strong, now I need to be for him.  Maybe we will be home by the middle of this week if my JJ continues to do as well as he did this weekend.

Plans for this week are:
John must learn to take the bottle and continue doing what he has been for the last two weeks.
Mom must: calm down, learn to administer 3 types of medication twice a day, catch early signs of cardiac distress, learn to insert the NG tube (most likely), take the mandatory CPR class, sterilize the home, get the car seat ready, go shopping for baby essentials and again CALM DOWN because this is a good thing that we are coming home.

Emily will finally meet her baby brother. I can't wait for that to happen. These 3 weeks have been such a roller coaster, I pray that John continues to do so well and ask that you all continue to pray for him as well.

Thursday, March 10, 2011

Happy Tachypneic ...

So we did not move to the step down today and I'm not sure if we will do so tomorrow. John is having a hard time respiratory wise. He can't seem to find a comfortable pace of breathing. He's fine and steady for a couple of hours and then has a fast breathing episode for a couple of hours.  They call him a "happy tachypneic", purely meaning a fast breather with OK sats , but today I got to hold him and he went either really happy or mad because instead of his happy 70-80 breathing rate he jumped to 100-150 at some point, not even the CPT's, suctioning or anything seemed to slow it down.  The doctor seemed quite concerned, and so were we (Joe and I) so they did two blood cultures, and a urine sample because along with this breathing he also had a temp. 38.8 C. I hope the cultures don't show an infection. We won't know until late tomorrow.

On a brighter side, he did seem to take a liking to the pacifier. I bought him one type (the type Emily liked) and Sisters-by-Heart provided a different one in their care package I received once I found out we were expecting an HLHS kiddo. He took to the later, thanks ladies, the Gumdrop pacies look much better than the ugly hospital one. 

Also I received my Mia Marrone Foundation Heart Charm. I wanted one for a long time but they were pink and I knew I was expecting a boy, so wanted something to represent that. Once Mia's mom announced she was going to get blue ones I was in the first order batch.  I got it a few days after the Norwood and am wearing it ever since. I love it and I love telling people what it represents. Here is me wearing it and holding my precious baby for the second time.

2nd time in Mommy's arms

Loving his Pacifyer

My HLHS Heart Charm from Mia Marrone Foundation

Wednesday, March 9, 2011

Tough Day (for me)

Today was a pretty tough day for me emotionally. I was reassured by all the heart moms that this is normal and most feel this way at some point, but it was still hard.

John was weaned off of his pain meds and only given Tylenol or other oral pain meds if he needs them. When I got there he seemed fine and was swaddled and looked comfortable, but then it was time to start his feedings again so that required an NG tube to be put in to his nostril which was already occupied by the nasal cannula for his oxygen (which he's being weaned off slowly).  So he did not take that well, then it was required that the nurse suction out whatever is down there first and he didn't like that either. She tried to retape his cannula and the NG tube and ripped off the tape 2 times and still the cannula was falling out so by then John was totally pissed off. One of the head nurses, Patty, came in and saw that he was struggling and wanted to retape him again, but I stopped her and asked if it would just be more comfortable to just tape the cannula up to his nose instead of his cheeks. It looks quite goofy but it would be less aggravating than ripping off the cheek patches once again. The other option I told her was that I could stand there and hold it up to his nostrils all day and I really wouldn't mind.  She opted for the tape up the nose. I agreed it was the least aggravating way to keep it up.

He fell asleep for a little while and then was fussy once again, this time there was no consoling him. I saw him looking at me and crying and hearing that raspy little voice of struggle and it broke my heart. I felt hopeless that I could not help my child.  He seemed mad and the pacifier didn't work, stroking his head didn't work, swaddling didn't help, lullabies, nothing. I felt like a failure of a mother, I couldn't pick him up or do much to help him. The worse thing was that when he looked me with those little eyes, I swear all I could think that he's thinking is 'why are you doing this to me' or 'why aren't you doing anything to help me'. It was just pure heart brake. I finally asked the nurse if he got ANY pain meds today and she said no, so I told her he needs something, it has to be pain related, at least it would relax him a bit. She did. Once he calmed down, it was time for another CPT and the respiratory therapist started beating on his lungs again. But once that was over she swaddled him and he fell asleep, I bet it was from pure exhaustion.

When he was sleeping he looked so peaceful, he rested for maybe an hour and then it was time for his vitals and diaper change which woke him up once again. After that it was time for me to leave to go home and since he was not sleeping I broke down again because I had to leave him and I totally felt that he knew I was leaving and he was probably thinking why is she leaving me. It was hard to leave him today.

Anyways, I think it's my emotions catching up with me after a week huge events in our son's life also the fact that Joe is no longer with me in the PSHU and we have to switch off. It was just not my day. John is doing well though but for some reason I'm dwelling on the bad and my own emotions, when I should be happy hes doing so good. Maybe tomorrow will be a better day.  
A quick update.... They are thinking step down either tomorrow or Friday... It seems way too soon for me but he's doing so well I don't want to jinx it .

Tuesday, March 8, 2011


Do you notice something new in this picture? NO BREATHING TUBE ! Early in the morning today, Tuesday, 6 and a half days after his surgery and at 10 days old they finally removed his breathing tube.  We are so excited. This is good, but the doctors warned us not to be upset if it still needs to go back in as not all kids are ready the first time, but we are still quite excited.  His sats were a little lower than the doctors wanted and his blood gasses were also similar so Jasiu was put on high flow oxygen through nasal cannulas and is still on nitrix (sp?) to help his pulminary bed which is still common.  He will slowly be weaned off of the oxygen as long as Jasiu sows to be responding well with his sats.

The only small setback he had is that his hemoglobin in the blood was inadequate for his condition thereforore he received a blood transfusion. He will probably get another one around two am as well. This should help him carry oxygen in the blood and keep up his sats to the level the doctors want to see. 

Since the tube came out today, he was supposed to get a day of rest, however because of the sats he got a respiratory treatment called CPT where they tap on his lungs (which looks like they are literally beating him around an area I thought would be almost untouchable for a while, where his chest was cut open). He didn't like this before the operation and didn't like it now. He also got an x-ray right after and then an echo. So much for rest when all these people were moving, tapping, sliding slimy wands over him etc.  But then he finally got some rest and smiled just as dad walked in to see him after work. I didn't have my camera ready, but I'm sure he was just passing gas, just as Emily was when she was that young she would smile when she passed gas also.

Anyways, if the breathing goes well overniht and tomorrow, they will start NG tube feedings and then slowly starting oral feedings later on next week maybe.

Keep praying for a nice recovery. Also we are following another HLHS warrior Legend from California who is a week older than Jasiu and he's doing just as well. Jasiu has a lot of HLHS'ers that he can take a great example from that are doing quite well and they are all such fighters that I can not imagine in a million years.

Keep up the good work buddy.  :)

Couldn't stop looking at that face all day !

Monday, March 7, 2011


Jasiu is doing pretty well ! Thank God ! He is still recovering and so far no setbacks, except our little JJ still is depending on more oxygen than they would like so they are slowly weaning him off of it and slower rate so that he gets used to breathe on his own. The plan is to extubate tomorrow or Wednesday. He just wasn't ready yet today.  But we ARE progressing.

On Sunday he was off of Epinephrine, a drug that went directly to his heart to help him keep up the heart  rate and a few other things. He tolerated this well and his heart is doing well. Also the JP drain line went out, it drained some of the fluid from around the heart.  Still getting the lasix, Tylenol and fentanyl and versed and a few other meds. On Saturday they started to give him breastmilk, only 3ml/hour, and see if he's absorbing it and tolerating it. Unfortunately it was ok at first but then they had too much residual so the doctors discontinued it and allow him to focus on the breathing and then work on the feedings. Baby steps. I'm ok with that. I personally like to take things one step at a time, so I'm confident that Jasiu does too.

Today they took out the Foley  catheter and Jasiu can pee into a diaper like any other baby. He has mastered the poopsters quite well. I even got to assist with the diaper change a few times yesterday.  Than they bothered him some more and took out another line that went straight into his heart and was used to administer different medicines. it had 3 outputs so before that they had to transfer the 3 lines to one of the IV lines in his leg.  This is where I go on a rant... We had a "student nurse" today that is being supervised by our registered nurse. I saw that she's not as experiences, how can she be, she's a student. but she was changing  the lines. This is a sterile procedure, we all wear masks in the room  (even little JJ) and it took quite a while to do, when I saw this being done a lot quicker. Nothing was done wrong and it wasn't hurting him as it does not require poking, but I was still a little uncomfortable.  Since nothing was done wrong, I decided not to say anything, but as advice I got from other heart moms as soon as I feel something is wrong I will speak up.
Jasiu was also aggravated today when they tried to put another IV in and poked both of his feet once and without luck, than the assistant manager nurse came in and tried in his hands and was lucky enough to get it done on the first try. But now our little boy has no free hands to be able to hold our finger since he has an IV in each one.  I LOVED WHEN HE HELD MY FINGER, AND SO DID JOE.  Hopefully he will be able to get rid of more lines/meds over then next week and he will once more have a free hand to hold.

Other than that, today is the first day Joe went back to work and since I like to keep the noise level down in his room we have been doing a lot of texting. I think we will run out of text messages within the week if we keep texting back and forth. He will take the evening shift at the hospital while I spend some time with Emily in the evening.  Hopefully we are here for a short while and once we get used to this routine it will be time to go home :)   I can't wait.

Friday, March 4, 2011

Things we take for granted

As a first time parent to a healthy baby girl and then a second time parent to a CHD baby boy with HLHS, I realized that there are a lot of things I took for granted with my first child. I tried to be the best parent and give my child the best of everything I was extatic to be a parent yet was naive and had no idea how truly blessed we were to have her. We did all the normal baby things with her and did our share of complaining about the routine mundane sometimes icky things we had to do. If a CHD child is your first you probably don't know any different, however if he is your second here are the things I and many parents of perfectly healthy children take for granted. 

  • Holding your babies - I got to hold Jasiu when he was 3 days old and assisted by 3 nurses and only for one hour
  • Changing diapers - Jas is a week old and I have yet to change a diaper
  • Feeding- his stomach has yet to get a drop of real food - should be able to get 3mls of breastmilk tomorrow
  • Crying - I have only heard him cry once when he was born and then "heard" the silent cry which made me physically sick - I felt his pain and could not hear a peep.
  • Having your baby gaze into your eyes - Jas opened his eyes yesterday for a few minutes and a few times today - it was wonderful
  • Showing off your baby to friends and family - only closest relatives were allowed to see him, one at a time and after 3 minutes of scrubbing their hands up to thier elbows and some wearing face masks
  • Sibbling rivalry/ adjustment - Every time I come home from the hospital Emily asks me if her baby brother is with me or when she can see him
  • Supportive and hands on spouse - I don't think I could do this without my husband and someone to lean on, wipe my tears and join me on this journey on such a personal level.

I could go on and on, but I won't.  It sucks but there are worse things that can happen. I promissed myself I will not dwell on the bad but rather be greatful for the good.

I'm greatful for many things for our situation like:
  • We live only 6 miles away from one of the best hospitals in the region that have one of the highest success rates in the country for CHD's
  • We have one of the best surgeons along with his surgical team that performs the most complex procedures and is one of the most compassionate people I know
  • We have a unit PSHU (Pediatric Surgery Heart Unit) that specializes only in children's heart surgeries and has the best nursing staff who only care for cardiac surgery intensive care patients.
  • Our son was born a very healthy weight at 8 pounds and was ready for surgery on day 4
  • We have the support and help from family and friends to take care of our daughter our home and us as well.
  • We have a beautiful older sister who can't wait to meet her brother
  • We have eachother (My wonderful husband is so supportive I can't imagine going through this without him) Also - Happy Birthday to him today.
  • A wonderful network of other heart moms who know exactly what we are going thorugh and are willing to share and support each other. I want to help other moms just like they helped me. It's a tough path to walk on.
For a quick update on John - HE GOT HIS CHEST CLOSED today ! Good sign for him. He will start feedings tomorrow a little at a time through the NG tube. He's finally tolerating being suctioned (getting mucus and such from his lungs) without being bagged and sats dropping. Now that the chest is closed he can lay on his sides and he's toletating handling really well. He's also more alert and is opening his eyes, wiggling his feet and grabbing on to our fingers when the pulse ox machine is not on his hands.  Let's hope he has a good weekend and than they will try to extubate (remove his breathing tube) on Monday. We will listen to John, as he is guiding his own path and letting us know with his sats and lab results when he's ready for things he likes to go his own pace so we won't rush him, as long as hes moving forward.  As they say - Slow and steady wins the race !

Thursday, March 3, 2011

2 Days post Op

Today had it's ups and downs, for me, emotionally. John is doing well and is recovering smoothly thus far. All the doctors are commenting that his swelling didn't get too bad and is now on his way down and a medication called Lasix to help him reduce his fluids and help his kidneys get it out. His fluid intake and output is now negative which means he's getting rid of a lot of the fluid they are putting in and then some, this is good.  He is on a lot of different medications for blood pressure, some straight to his heart, calcium, pain medication, sedation medication and a few more that I can not even remember. He also got two lines pulled today! The venus and arterial lines from his belly button were pulled. This was the difficult to see emotionally part for me. The venus line was easier as it was pulled gradually and seemed to be pretty painless for him. However when they pulled the arterial line, it was all at once and I saw his pain. The nurses increased his pain meds, but he twitched, pulled his legs and even swung his arms when they did it and was obviously crying, though no sound came out. It was the most difficult actually seeing him in pain and trying to cry it out and me as a parent could not do anything to soothe him. I even think I felt that pain physically.  The second hard part that seemed unfordable to him was when they adjusted his breathing tube. He was producing a lot of mucus and had to be suctioned out a lot from his lungs and they decided that the tube was now too far down as the swelling was decreasing and they had to readjust it.  But overall he is doing well. His sats are good and hes actually over breathing the machine at some times during the day. This is another good sign for recovery.

After Friday mornings' rounds the doctors will decide if John is ready for his chest closure. If he's not ready yet there are small chances that will be done over the weekend. If not than we have to wait till Monday.

Friday at 12:34 John will also be a week old. How fast time flies. It was a week full of emotions and tears both of fear and joy. We thank God for everyday that we have with our precious baby and for every good day and for many more to come.

An update on the family, I will get my stitches out tomorrow and am feeling overall well. The pain meds are helping and I will begin to wean myself off over the weekend.  Joe is doing better too, he's finally sleeping a little better. Emily is also adjusting. She keeps asking about her baby brother and when he will come home. She also is SO happy to see us when we get home from the hospital. She is helping us cope with this as well, seeing her sunshine smile makes each day a little better as well.

Wednesday, March 2, 2011

Surgery - Stage 1, Norwood Procedure

Jasiu did Great ! Dr. Illbawi did Great! I thank GOD and the whole surgical team for taking such good care of our son.  Yesterday, 3/1/11 will be one of the most significant dates in our lives the day we handed our baby over pretty much a stranger to fix and literally touch his heart. It was an emotionally draining day and one of the longest that started out at 6 am when Emily woke up.

last pic with his chest perfectly clean

We got to the hospital and things were still looking good. Surgery around 2 pm. However when the doctors were doing thier rounds, the doctor informed us that an earlier x-ray of John's chest indicated a collapsed lung. Basically what that meant that there was mucus or some a mucus plug causing the left lung not to get enough oxygen. The resident at NICU showed us the X-ray and compared it to one a few days ago and told us that the lung was not getting enough oxygen and they want his lungs to be in tip top shape for the surgery. He ordered a few tests, suctioned and bagged him a few times and then reordered the x-ray. All this would have seemed extremely dangerous, and don't understress, it was a big deal, but I was sort of calm about this one, as one of fellow heart moms told me her baby had the same thing and she did very well and is thriving. The heart community is a wonderful thing, where other moms are so supportive and so informative and willing to share their exeriences that it can be one of the most reassuring resources for someone just starting this journey.  Anyways, they got that cleard and he was ready for surgery but surgery wasn't ready for him.

It turned out that another heart baby needed his surgery much more than John needed his. It was a different type of issue, but his condition required immediate repair, as opposed to John who was stable.  It was frustrating to keep waiting, we waited for 3 extra hours, but didn't know if the surgery would even be rescheduled. It did only take a few extra hours and we were taken from the NICU at around 4:45. It was quite a journey from NICU to surgery. We had the priviledge of getting escorted by Dr. Illbawi (head chief as one of the nurses put it) to surgery. This great skilled surgeon was the one, along with other nurses, wheeling our son  to surgery and doing the oxygen bag while en route. So the reason the trip was so intense is because here we have this 4 day old fragile baby who we want to keep as stable as possible and the respiratory therapist to join our walk down to surgery is missing, than we get to the elevator and the nurse forgets to press the floor we need, so instead of up to the floor we need to, our elevator skips our floor. We don't want to travel the elevator all the way up to 9th floor with John  if we don't need to so we exit at the nearest WRONG floor and press the button down. We get out the elevator door closes and the same elevator turns out wasn't needed any higher and reopened, so here we go again loading the same elevator and then end up on the 3 rd floor. We then hurry to OR and say our last goodby and kiss. It felt like someone was  taking him away and I had no idea if I was ever going to see my baby again.
Leaving to operating room

 Before John got wheeled in, we asked Dr. Illbawi how long, realistically, was this supposed to last. He nanchellantly said 6 hours and confirmed beginning to end.  We were really expecting 6 "hospital" hours to last 8 or 9 but to our suprise, the nurse came and gave us updates and at 5 hours 45 minutes she told us they are done with surgery, patch is being put on his chest and we can see him as soon s they stabilize him in his room in the PSHU (Pediatric Surgery Heart Unit) in about 2 hours. We were actually getting nervous why the surgery went so quickly, were they hurrying, or was John just taking it all very well. Turns out it was the later and things went great. The head chief came to talk to us and told us good news, we saw our son again a few minutes longer and stayed with him for about 2 hours that night. Since we live only 6 miles from the hospital we don't stay at the Ronald McDonald house and went home at 2 am. It was the longest day of our lives almost 24 hours (for me it ws 4 days post surgery) We were exhausted but all that mattered was that John was ok. The next 24-48 hours will be very important to see how his body heals and is weaned off of the medications, tubes and all the stuff that is currently coming out of his body. It's pretty grousome, so for those that didn't go throuh this it will seem like this kid went thorough war, and in some sense he did. A battle well fought and just waiting for recovery.

We will go see him and spend a lot of time watching him as his nurses in the PSHU will as well. We continue to pray for a speedy recovery and no bumps in the road. God bless !

Tuesday, March 1, 2011

We just kissed our son bye and they took him in. We will know in 6 to 8 hours... But my phone battery won't last that long. I will update when I can.
I hate hospital time ... Our surgery is delayed from 2pm to 5 or 5:30... At least we were not the emergency case that HAD to go first . Still praying

Bonding Time

I got to hold our new baby for one hour when he was 3 days old. It was wonderful... the things we take for granted...

Had I known they will let me do this and that it will require a hat I would have broought the awsome hats that my cousin Teresa and my godmother brought. They bought two of the cutest hats and my aunt had them custom embroydered with Johns initials "JJ Krol" and one with his Polish name on it "Jasiu" .  BBut he will get to wear them later and for that hour we had to deal with the crochet yellow hat the nurse gave us :)

He looked adorable anyways.


I got discharged from the hospital 3 days after the delivery via C-section. I had the option to stay for one more day, however I chose to come home so I can spend some time with my daughter before one of the biggest days of our son's life.  It was a bittersweet home coming, the car felt so empty, I think my husband and I cried the entire way home because as any mom being "discharged without baby" is one of the hardest moments of her life. The only comfort we had was that he was still fighting, we will get to see him the next day and that made it bareable.

Jasiu has been doing well under the circumstances. His biggest obstacle is his oxygen saturations fluctuating and having to be bagged quite a few times. However scary it may look, I quickly learned frm his nurses and all the supporting heart moms is that it's normal for his condition.  He also did need a blood transfusion on Monday afternoon because his hemoglobin was too low and they wanted his blood counts to be good for surgery.

Surgery is scheduled for Tuesday, March 1. Our baby will be 4 days old.  I can't believe it. I knew going into this and discussed the procedure with the surgeon while pregnant, but actually hearing all the risks, details and signing the consent form was heartbraking. Basically you put your childs life in someone's hands who tries really really hard to fix it. Dr. Illbawi's surgical team I have been assured is excellent and their success rates are as well, however it is still so difficult to hear that your baby's heart will be stopped, put on bypass, etc. Just heartbraking.  Another good thing was that the residents said he is in excellent, they specifically said excellent, shape for surgery, so that is a major plus.

On another good note, though they are not feeding Jasiu real milk yet, I have thus far been having a really positive experience pumping, compared to my first try with Emily. Grant it, it's day 4 at 6 am right now and I may be a little sleepy, I am happy with the outcome. We shall see how successful I am down the road. It does seem as if this is one of the only things I seem to be in control of, as getting out of my bed to do this, still requires me waking up my husband to be my mechanical bed that I used at the hospital. But better to wake him than to mess with the incision and let my stomach heal.

One more good thing yesterday was that I was able to hold my son yesterday for the first time as well. I can't believe it took a whole team of nurses and a respiratory therapist and my husband to assist in moving him to my arms, but that one hour was glorious. I pretty much held my breath the whole time so I would not move too much to upset him and his saturations. But Jasiu seemed to like it and was't complaining too much. He didn't get mad enough to be bagged, which the nurse was excellent.  I can't wait to do it for real and with no tubes. I also can't wait for a family photo of all FOUR of us and not 3 at a time.

Emily can't wait to meet her brother. She has been so mature for a 2 and a half year old. I can't believe it. I love both of them soooo much.

I will keep everyone posted on progress through out surgery and asking for your prayers that everything goes according to plan.


Proud Daddy of his first born Son !

 Our Jasiu

Look at that adorable face

with his mommys scent so he doesn't miss me too much :)