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 !

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.



Bittersweet

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.

Pictures

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 :)

Day 1

Our baby boy had a pretty good day today. He did have issues at night with sats that dropped to the 50's but than that was stabilized. During the day he had a respiratory therapist try to get some flem or stuff from his lungs, but as most cardiac babies he did not like to be disturbed. They did this a few times and than he was ok and stable again.

Since this is the weekend, we did not get an update from the cardiology team, but the NICU nurse told me that if everything continues as it is going, he will have the Norwood surgery, first of three surgeries to rewire his circulation on Tuesday. Jasiu will be FOUR days old. This is one of the hardest surgeries because one he's a newborn and he has to be placed on bypass. We will learn more about the details from the surgeons probably on Monday. 

Jasiu finally met his Aunties Aga, Kasia and Teresa, grandma Krol and Auntie Skupien. I was with him the whole time they were visiting and he got way too excited hearing my voice the nurse said. I saw his breathing change a bit, so I left the NICU to give him a little break.  I can't believe how much he can recognize my voice. It breaks my heart to see him look so good yet be so fragile. 

I am doing well as well, moving around more. The plan for me is to be discharged Monday night or Tuesday morning, which on "hospital time" is probably around 3 pm on Tuesday.  I am so thankful that we live so close to such a good hospital that I can split my time and see my daughter every day and still be here at the hospital with my son.  We keep asking everyone to pray for him so that he has the strength to get through this.

Photos on blog will have to come later when I have more time and energy to work on it.  :( Some are uploaded to FB as it's easier than the blog.

Kathy 

JOHN JOZEF

Our precious baby boy John Jozef (Jasiu , in Polish) or JJ as my sisters like to call him made his debut today February 25, 2011 at 12:34 (notice the sequential numbers :) He weighs 8 pounds even and 20 inches long. Jasiu scored a 9 and again 9 on his APGAR so that's awesome and you would never think there is anything wrong with this precious baby if he wasn't diagnosed in utero. Once they cleaned him up a bit they let us see him, the chaplain baptized him with water and Joe and I both got to hold him for a few seconds each. It was the most wonderful moment of the entire day. Just as special as when I got to hold Emily for the first time. Than they whisked him away to start stabilizing putting in all the lines medicines, etc. I went to recovery and since Joe couldn't be with the baby he stayed with me sporting his blue scrubs outfit. (Second time in his life...pictures to come tomorrow) Jasiu wasn't ready after I was let go from recovery to my room so I haven't seen him since the OR. Joe got to see him between stabilizing and the time the cardiology team began their work.

Once cardiology was quite far along with the echocardiogram and x rays and putting in more lines a Fellow came to give us an update. The HLHS was confirmed and surgery will be necessary to save his life. We will be fighting right along with him and we are in one of the best hospitals in the area to handle this type of complex CHD. That makes me feel a little better. Joe put a little green angel in his NICU bed I got from a fellow heart mom and it was also blessed when we had a priest visit after christmas. There was a small problem with one of the lines that were going to go to a vein from the heart, it went to the liver and they worked hard to reroute it but we had to sign a consent form for a line through the groin. He is also intubated so that the doctors can closely monitor his breathing so he is as stable as possible. Joe took my mom in the NICU for a little and than my sister. Tomorrow he will meet ciocia Aga ciocia Kasia and grandma Krol. They keep it pretty calm in the NICU so not too many people will be visiting the little guy besides Joe an me when I can walk or sit up.

I am feeling ok considering the c section. Not much different from my first. The only thing missing in my room is my baby. Its pretty hard to hear all the babies cry in others rooms since mine is quite quiet (when the Klimek side of the family is not visiting) I miss my boy and its hard without him... Unless a mom had a baby in the NICU you have no idea... One of the only things keeping you sane is knowing he is in good hands.

Joe went home to be with Emily, I told him to go since he is pretty tired as well and Emily sometimes has a hard time falling asleep without one of us. So I made him go home. I could see that it was hard on him to leave and even split time between me and the baby. When he drops off emily at my moms house tomorrow he will bring me my laptop and I can get pictures up. So far FB only has pictures of pictures from our digital camera. Also this entire post was typed on a blackberry so I'm now pretty tired as well. This keyboard is quite small but I wanted to update everyone and I wanted to kill an hour before they wake me for my vitals every three hours...no point in falling asleep just to be woken up a few minutes later. So I literally spent an hour starring at this thing.

I will update tomorrow and whenever I can

I want to thank everyone for the prayers and keep them coming Jasiu needs it and we need help in praying for him. That's the best thing anyone besides the doctors can do

Less than 24 hours...

In less than 24 hours we will have met our little boy. Even if it is for just a moment that they will show him to me, I will have seen him FINALLY.
Throughout the last half of this pregnancy I was preparing myself for this moment. I still don’t think that I am fully prepared, but how can you be. I don’t think any mom ever will be or ever was, even if she knew she was expecting a child with CHD.

I am terrified of what will happen to my child. The last few months I have seen so many babies earn their angel wings and leave their parents in despair because of HLHS. It’s a terrible disease, all CHD’s are! No one is promised tomorrow, but it’s not fair for those kids that have to endure things that most adults will never even have to.

I am still hoping that there is a slim chance that the doctors were wrong, that there will be nothing wrong with him and all this was just a bad dream. But if it isn’t I’m hoping that this is the only ailment we will have to endure. All echos were pretty good, all NST’s and biophysicals were great yet there is still so much uncertainty. I hate that.  In the last 10 weeks I have had 40 doctor’s appointments. I also know that this is not the end, that tomorrow will not end the doctor’s appointments but then I won’t be the patient.  I wish I could take it all upon myself and not allow this baby boy be poked even once. Not him, not Emily.

The last 10 days I was out of work and spent the time thinking and rethinking of what will be happening to us. I also spent it with Emily, since I was feeling up to it. I wanted to give her the last few normal days that I can. We went to play dates, play yards, Children’s museum and all sorts of fun. She had a blast, though it tired me out.

The plan for tomorrow is to go to church in the morning since I will be missing Sunday mass and pray for our little miracle, drop off Emily at grandmas and go in for the C-section which is scheduled for noon on Friday, February 25, 2011. After that I don’t  know… I’m assuming they will show me the baby for a few minutes and take him away to analyze, stabilize and do all sorts of tests to assess his condition. I will go into recovery, he will go to the NICU and my husband will split his time between me and our son.  In the evening if everything is good, Joe will go home to our daughter and come by again to the hospital on Saturday.  I should be discharged by Monday if all goes well again. 

I will try to update the blog as soon as I can and hopefully with some pictures of  Jasiu if Joe can get any in, which I hope he can.  Till then…

10 Days ...

Today was my last day of work. Our baby boy should be here in 10 DAYS. Single digit countdown, this means it’s getting really close and I’m getting really nervous. (Hopefully he doesn’t decide to come early as my daughter did. I was going to have 7 last days of just me and my husband before her scheduled C-section and she decided to punch the water open one week early. ) During this 10 day period I plan on spending all my time with Emily and Joe (though he will be working). It will once again be a period of lasts:

·         Last days  we are a family of 3

·         Last days  Emily will be getting ALL the attention

·         Last time we go to a birthday party without being overly worried if there will be sick people there

·         Last days we can pick up and make spontaneous plans to go to a play date or anywhere.

·         Last days I will be able to provide a completely painless and safe environment for my son.

Everyone says it’s tough going from 1 to 2 children. It’s “normal” to be afraid, however I feel like this is so much more than just a second child adjustment as most moms describe it… again sleepless nights, jealous sibling, breastfeeding, etc. For us it will be the NICU, hospital, surgeries, medicines, doctor visits, constant surveillance and worry.  I have been wondering how we will adjust to all of this now that it’s so close and though I have had so much time to research, talk to people and read up on others’ experience, I don’t think I will ever be ready. It just has to happen.

I hope that our son, John Joseph, will be strong and “healthy” enough to endure this great journey that he is about to embark. This can be a cruel world but his will be filled with people who already love him so much and are willing to do whatever it takes to make sure that he beats this horrible disease and make his life as full of love laughter and happiness.

So now we wait for the arrival of this bundle of joy and PRAY for the best of luck to him and may God guide us and the medical staff at Hope to do everything in their power to mend his little heart.