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.

Efficiency Expert ???

I realized today that in the next two months, I must become an efficiency expert. Not that up to this point I was inefficient but I have some work to do as I sit here and write this past midnight after I balanced my check book/ family budget, cleaned up the kitchen and Emily’s toys.

Up to this point I had a pretty good system, working efficiently at my job so I get my work done, go home take care of my family, make sure food is cooked on a fairly regular basis, the house looks decent, bills paid on time, all expenses recorded in excel monthly, etc. I attend all the monthly appointments like the visit to OB, growth ultrasound and echocardiogram. NOW, I must add to this list a bi weekly visit to the doc and clinic for non stress test monitoring of the baby as well as finalize everything at work before my maternity.  It’s all doable, but like I said, one will have to be an efficient machine to do all this in the span of the measly 168 hours in the week. J

I guess this pre baby craziness in my schedule will only prepare me for what is to come once the baby is born, has his surgery and then hopefully comes home with a strict regimen of feeding, meds and more appointments, not to mention taking care of Emily and all her needs as well.  Ohh and my husband, can’t kick him to the curb either.

My biggest problem is that I am a control freak, and I needed to do everything myself up to this point, that’s probably why my schedule gets so hectic. Speaking in work terms, I need to leverage down, which includes asking for help of my family and friends.

So the next few weeks before this baby comes will be interesting but mostly under my control, however after that as all heart moms tell you, you can’t plan much and go with the punches and pray for the best.

Kathy

Dear Family and Friends...

Dear family and friends who are learning about our situation from the blog... please don’t feel left out or offended for what looks like an impersonal approach to the situation. To learn about the journey we are about to embark please read from the beginning.

Only a small group of people knew until now. I did not mention specifically because it is hard to discuss with everyone individually. Every time I must explain to someone this entire ordeal I sort of break down, can you blame me. If you want to talk or get more information from me feel free to call me. I am now ready to talk about it. You would have found out anyways after our baby was be born since you won’t be able to visit us at home like you did with Emily. We will likely be in the hospital for a good 4-6 weeks if everything goes great. I would rather have you find out this way than to get the wrong facts from word of mouth.

Finally Being Positive ...

It took me slightly over 2 months to get used to all this newness in our lives. I started to think about the nursery and how I wanted to decorate, paint the walls and any essentials I needed Joe to dig out of the crawl space in our basement around middle of December. Up until that moment I was still struggling to envision bringing this baby home. My sister and Joe keep telling me that I need to stay positive and have hope in order to be strong and that I really need to give this baby a chance, but I couldn’t get the horrible thoughts out of my head that there is a possibility that we would not be able to bring him home with us ever. I had to fight with myself to take that step and go to the paint store or Babies R US for décor because all I could think of is that if I do all this: prepare the nursery, bring out the car seat, buy the clothes and I won’t bring this baby home, I think I would die by having to see all that emptiness. It’s that instinct that you want to protect yourself from reminding you of grieving or a loss, but finally I realized that I must prepare and hope for the best and not dwell on the bad. 

It took a long time to do this: almost 10 weeks, 3 echocardiograms, 4 ultrasounds, reading almost a hundred blogs from moms in similar situations (good and bad outcomes), searching HLHS on the net on English sites and Polish sites, watching a taped Norwood procedure, joining a few heart mom groups and much more.

Now it’s 10 weeks away the nursery preparations are finally beginning but I feel like time is running away from me. I think that I know exactly what is waiting for me, my son, my family. I read so many blogs just like this one from moms who just were diagnosed with HLHS a few weeks after me to moms whose kids lost the battle, those undergoing the journey as I type this and those who went through all the staged surgeries. I saw the pictures of babies’ right post surgery, 2+ days, 6+ days, months post surgery and I think I’m ready for all of this, but the reality is no matter how much I feel like I can be prepared for this to happen I have absolutely no control over what happens after the baby is born.

It’s all in Gods hands, the hands of the surgeon nurses and staff at the hospital. Most importantly, it depends on how much the baby can handle, how strong he is and how his fragile little body will react to all that will be going around him. So for now please pray for my son. We must have faith.

Based on his activity level in my belly, I would say the kiddo is strong. Sometimes he kicks so hard that I have to stand up, all this is a good sign, and I have only jokingly complained of any discomfort or pain. All this I feel like I took for granted before especially when I was pregnant with Emily. I didn’t pay much attention to the kicks or flutters, the little things. Now I’m so glad when I get good growth reports from the ultrasound tech or when the cardiologist tells me that there are no leaks in the veins. I get worried if I don’t feel him move during one half hour even so I poke him to see if he’ll react, though I shouldn’t do that, I should let the baby sleep.   The healthier this baby is overall including weight and all other development the better he will adapt to the new circulatory system the doctors will create for him.

So now we wait until our baby boy makes his debut and we’ll see how we do. I will update the blog when it’s time to go and then on our progress so that whoever cares to know will be able to follow along on our journey.

The Story Continues...

As you will see it was a busy and stressful 2 weeks after that Saturday.

10.20.10 - The days were extremely long leading up to that Wednesday when we had our first echocardiogram and we met Dr. Cuneo at Hope Children’s Hospital. We had a 9 am appointment and weren’t seen until around 11. During that two hour window I have seen 3 babies less than 6 months old come and go for appointments, numerous pregnant women come and go and that entire time I was wondering why are they here, what is wrong with their hearts? It was one of the longest 2 hours of waiting… little did we know the waiting was just beginning, everywhere after that point we waited and waited to be seen.

When we were called in my heart started racing because I was that much closer to finding out what it was that was wrong, the severity and a lot more than I thought I could handle. The tech did the ultrasound and then the doctor came in to review and examine as well. Then we went in to discuss the diagnosis.  It was Hypoplastic Left Heart Syndrome (HLHS as it is commonly known for short).  Basically the left part of the baby’s heard is severely underdeveloped or not developed at all. This is important because the left side of the heart is responsible for pumping oxygenated blood to the body. If this condition is left untreated it is fatal for 100% of newborns. The baby may survive a few hours to a few days depending on how quickly a part of the heart that naturally is open in utero closes after birth. We were given a picture of a normal heart and our baby’s heart a full explanation and our options:

·         Terminate the pregnancy - legal limit in IL is up to 24 weeks gestation

·         Compassionate care – carry the baby to term and then let it die naturally

·         Try to repair the circulatory system through a series of 3 open heart surgeries

I could not process any of this, I heard it but could not process. I felt like I had to make a decision right there, like there was no way out, I felt completely hopeless.  If it wasn’t for Joe  I think I would have died right there. He assured me that we had to think things through, see a second opinion, get all the facts and then make a thoughtful decision.

That day changed my whole life. I realized how much I have taken for granted, how much I complained about the little stuff, how I didn’t realize that I had such a gift at home a gift of a healthy child I took for granted.  

We requested that she refer us to another doctor to get a second opinion.

However the bad news did not stop there, that same afternoon we had an appointment at MFM with a genetic counselor to discuss another hard topic, OTHER POSSIBLE COMPLICATIONS.  What I didn’t mention is that the ultrasound doctor from last Saturday also found two choroid plexus cyst on both sides of the brain. This is usually common and goes away by the time the baby is born, however if combined with other diagnosis, like HLHS, it could indicate other chromosomal abnormalities, most often Trisomy18, which has a high mortality ratein itself. So they suggested I get an amniocentesis test done, (invasive procedure to take fluid from around the baby to test the chromosomes). This test has risks in itself of miscarriage about 1 in 400. Needless to say we hesitated, but the counselor convinced us that the benefits outweighed the risks. If there were any other chromosomal abnormalities the baby would not even be a candidate for any surgeries and we were left with terminate or have the baby and let it die. Not what you want to hear as an expecting parent. So we went ahead and agreed to the test it was scheduled for the next day.   Knowing the results to this test was supposed to make our decision “easier”.  It really made it worse. I was dealing with potentially two life threatening conditions for this fragile little child inside me whom I was already feeling  moving.  Again it was devastating.

10.21.10 – Second opinion with Dr. Gotteiner at Northwestern Memorial Hospital. Another long echo, same diagnosis, same grim news.

That same afternoon – Amniocentesis test at MFM. It actually wasn’t a scary procedure physically but emotionally draining as I didn’t know how my body would react and if there was nothing wrong chromosomally our decision to have the test would be the direct result of a miscarriage. But I did well and then we had to wait a full 2 weeks for the results. It was a loooong 2 weeks.

10.23.10 – Regularly scheduled OB appointment the doctor again talked about all the results of the tests and reassured me that whatever decision we make is good.  This is the first OB appointment that my husband attended, there was no need before this. (Obviously he went to all the specialists and tests etc)

10.25.10 – the basic FISH test results come in from amniocentesis test and they are GOOD. Some hope picks up but still waiting for  the full lab result.

10.30.10  - Another MFM ultrasound because on the original scan the doctor could not see all the facial features and he though he saw something unusual so he wanted to do a second scan. This time the face looked fine, our little  boy is just quite shy and keeps his face covered with his hands.

11.9.10 – Full amnio tests come back all GOOD J.  By this time I had almost 3 weeks to do all the research I could possibly find, Joe and I talk heart to heart and we didn’t even need these results to decide to keep the baby and let him fight it out. We decided to do everything in our power to help him fight this battle. But knowing that this will not be an ordinary pregnancy and life for my son is still so devastating, that I have to fight tears every time that I tell people I will have a little boy and they smile and say “ohh how nice, you must be so excited to have one of each” because in my heart I know that I can lose this little one in the blink of an eye. (Here I go again being negative)  Everyone keeps saying be POSITIVE, I’m trying I really am.

Our Journey Begins

It took me a while to get to the point that I wanted to do a blog and I was going to start posting later, but my sister convinced me that this was a good idea. (Thanks Aga!) However I got so much support from all the heart moms and inspiration that I decided to do my own. Here it goes…

The beginning of this pregnancy was pretty uneventful. At 7 weeks we went to Maternal Fetal Medicine for an ultrasound to confirm that I was in fact pregnant and to determine the expected due date since it was not as clear as one might think with this one.  I went to all my usual doctor appointments by myself, did all the routine blood work and continued to work and function as normal. As a CPA working in public accounting and being newly promoted to manager that August, I was working crazy hours (even on my reduced work/pay schedule) and the September 15th and October 15th deadlines as well as my cute little 2 year old occupied all of my time. I even remember telling my friends at work that probably because this is my second pregnancy and busy season I have neglected to pay as much attention to the milestones and passing weeks to notice that I was already half way done by October 15th. I "celebrated" the end of busy season with my co-workers on a boat drinking cranberry juice and WATER while the rest of them were getting wasted and I had absolutely no problem with that. The next day, October 16th I was going for my 20 week ultrasound, going to find out if I was having a boy or girl and generally on cloud nine, thinking that I finally got my life back after busy season and all was to be easy from now on. I was happy to finally start preparing to bring this baby home.  

The morning of the ultrasound we got ready with Joe, got Emily ready to spend the morning with grandpa Klimek and were off to MFM for the ultrasound.  We were so excited, joking, etc. We waited a while even though we were on time. Than we got called in and the exam started as usual, we were joking around with the tech and she gave us the good news, we were going to have a little BOY she said, with utmost certainty and then went on to do the rest of the measurements. We were so happy; Joe and I were again on cloud nine.

The exam seemed to take long but we didn't care then the doctor came in to verify her findings, this is routine but then he took a much longer time than the tech and longer than I remember the doctor spending with me when I was pregnant with Emily. When he was done, he said he saw or actually DID NOT see a full image of the heart. I twisted and turned and let him do more scans but I already had tears in my eyes and knew something was wrong. He went on to say he sees a problem with the heart and wants me to see a specialist and that he will give me a referral to a pediatric cardiologist to do a fetal echocardiogram, which is an ultrasound specifically for the heart only and will be examined by someone who only specializes in the heart.  I flipped out and was crying to the point the doc had to stop talking.

I went from the happiest woman in the world to most scared, hysterical, and alone in the world.  I cried in that dark ultrasound room for what felt like eternity in pure shock until Joe calmed me down and we went to the doctor's office to get a little more information. It’s so amazing how quickly your entire world can change in a matter of minutes.

There he told us what he thought the diagnosis was, why it was important (how the "normal" heart works) and what our boy's heart is formed like. At that time I did not remember the diagnosis name or much more of what was said in that room. I just thought why ME, why MY baby, WHY WHY WHY !!!

That was Saturday, of course I try the cardiologist's office right after we leave MFM hoping we can get the echo that day, I just had to know but no such luck. I had to call the cardiologist on Monday and schedule an appointment. Dr. Cuneo only sees fetal patients on Wednesdays and at such short notice they could see me in a week and a half, the following Wednesday. I just couldn't wait, I call my OB and begged her to call the specialists office and request that I be seen that Wednesday. It worked; we had a morning appointment on Monday.