Thursday, December 16, 2010

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 d├ęcor 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.