The unveiling of Sonia’s gravestone was held over Memorial Day weekend.  It was a beautiful sunny day, just like it was on the day of her funeral.  We were surrounded by family and friends that came from near and far.  The atmosphere was different than when we gathered there last September.  I felt like we said goodbye to her then, where as we were saying hello and we miss you at the unveiling.

The rabbi that lead the funeral had to cancel at the last minute to due an illness in his family, but he had a friend come in his place.  He did a wonderful job and even though he barely knew our family, he gave an excellent sermon and honored Sonia well.  There was an airshow going on nearby for fleet week, and some beautiful classic planes flew overhead during the ceremony.  While some might have found this distracting, the pilot in me thought it was a fitting tribute.  I’d like to think Sonia arranged it for us.

The stone itself is beautiful.  Shannon and I put a lot of thought into the design and it came out just as we had hoped.

The permanence and finality of the memorial were sad and comforting at the same time.  It reminds us of her passing, but it gives us something physical to touch and see and remember her by.  Faye did not attend the ceremony, but we all came back the following day to visit with Sonia and place rocks on her gravestone (a Jewish custom).  Faye did real well and it was touching to hear her talk about sister. 

Faye is a real “gatherer” whenever we go outside.  I often come back from our walks with my pockets filled with rocks (at her request).  What we have started to do is pick one special rock from each of our walks and place them in a special box for Sonia.  Now when we go visit her, Faye can bring a little piece of home to Sonia.

We can’t thank Marv and Nathalie enough for opening their house to us and our family for the reception following the ceremony.  You both made what was going to be a quick get-together into a warm family gathering.  Thanks to all who came to honor Sonia.  We hope that this was just one of many visits you will make to her graveside.

We owe a great deal of thanks to our friends, family, and especially Rabbi Freid from Chai Lifeline for helping with the arrangements for the funeral.  Shannon and I had no idea how much was involved in planning a funeral.  It was the last thing we wanted to deal with while we were grieving.

Rabbi Freid, who only knew Shannon from brief visits at the hospital, made all the necessary calls and arrangements.  We really can’t thank him enough for his efforts.  There was some last minute shuffling, but my family found the necessary papers for the family plot in New York.  Our parents also took care of notifying everyone, so we didn’t have to.  It is Jewish tradition to bury the dead quickly, since we believe the soul cannot fully rest until the body is in the ground.  We were also constrained by Rosh Hashanah starting Wednesday evening.  Baruch Hashem, everything fell into place and Sonia was honored properly.

The service was very nice.  It had been raining and miserable all week, but the skies opened up and the weather was beautiful.  Despite the short notice there were over 50 people in attendance.  Being around the people we love was an incredible comfort to Shannon and me.  Family carried the small coffin to the grave site.  The rabbi said some very nice words.  Being so far from home, it was especially nice to have a rabbi who knew both Shannon and Sonia and could speak about them.  After most of the formalities, I said a few words.  I saved the paper and here is what I said,

I can’t imagine a worse task than burying your child.  Today brings us great sadness and pain.  It may have appeared that this whole experience was filled with only sadness and pain, but Sonoa was really a tremendous source of joy.

When Shannon and I first learned that Sonis had a broken heart we were crushed.  We vowed that no matter what happened, if we had just one day with her, it would be a blessing.  Little did we know that we had such a fighter on our hands.  She gave us four wonderful months and we cherished every day and every minute with her.

Sonia will never roll around on our family room rug, she’ll never run in our yard, never learn to ride a bike, read from the Torah, or dance at her wedding.  But one thing I’m sure of.  During her brief stay here she knew love.  Love from her parents and love from friends and family all over the world.  Sonia touched so many people.  You could even see the love for her in her doctors’ and nurses’ eyes.

It’s hard to imagine being proud of an infant, but that’s what I am.  I’m a proud dad. That little girl fought so hard for so long with the heart that God gave her.  She taught me so much about courage and strength.

Sonia was named after my grandmother Sonia, another woman with an incredibly strong will.  I know my daughter did her namesake proud.  It gives me great comfort to know that the two Sonias are together now and that my daughter is in the warm comforting arms of her great grandmother.

Sonia, I love you with all my heart and I am so proud of you.  May God grant you peace and rest.

We spent the rest of the day with our friends and family.  We were only able to sit shiva for a few hours, as the holiday breaks our period of mourning.  We’ll continue to mourn Sonia in our own way though.  High Holiday services were strange to say the least.  I think the davening and introspection helped at times, but was difficult at times too..

We have had several people ask about what they can do for us.  We are actually doing OK for now.  Love and support is all we need.  If you want to make a donation in memory of Sonia, we would like to suggest a few options:

• Chai Lifeline was an incredible help to us through this whole ordeal.  They go out of their way to support Jewish families dealing with chronic illness and extended hospital stays and ask for nothing in return.  They came to the hospital daily to deliver kosher food or just visit with Shannon & Sonia.  Rabbi Freid took care of all of our needs when Sonia passed and Chai Lifeline paid for the majority of the funeral expenses.  We are forever indebted to them.
• The Philadelphia Ronald McDonald House gave us a comfortable place to stay during the many months we were in Philadelphia.  I never knew what RMH was, but I can’t overstate what a blessing they are to families of sick children.  Lodging is only one part of it.  They make a tough time for anyone a lot easier.
• CHOP Cardiac Center – Congenital heart defects affect nearly 1 in 100 babies.  It is the most common type of birth defect.  The staff at CHOP are leading the way in research and treatment for CHD.  We would like to think that Sonia did her small part to help doctors learn more about these disorders and our loss will help to save lives in the future.  Your donation could also help to save future CHD kids.  When donating, be sure to select “Cardiac Center” from the drop down list.

With this, I think we will close out “Sonia’s Story” on the website.  She will always have a special spot in our lives and her story will always be here to give hope and inspiration to all who see it.  I’m so glad that the world was able to meet her and we could share the joy she brought us.

To all the wonderful friends we met along the way, we hope you will stay in touch and keep up with the Rubins on the rest of the site.  We really couldn’t have gotten through this all without you.  We would love to hear how all of Sonia’s friends are doing over the years.

I believe Sonia was under heavy sedation throughout the entire day, so she did not suffer.  The doctors and nurses worked with all of their might from that point until about 6:30 pm.  I could see tears in their eyes and strength in their resolve.  They loved my little girl and wanted to give her every chance they could.  At about 6:30 pm, the head doctor at the bedside looked up at me with tears in his eyes and asked if I wanted him to start chest compressions.  Holding back his cry, he told me he didn’t think there was anything more they could do.  I told him no and began to cry myself.  Somewhere inside I found the strength to speak to my little girl.  Up until that point I had been telling Sonia to wait for Daddy, and that Daddy was coming.  But at this point, I told her to go home to God.  I told her to go to sleep and rest.  I said the Shema to her because it is our custom that it should be said when a person is going to pass.  I told her everything I had to say and how proud we all were of her.  I told her she was loved and I told her she would never be forgotten.  I even joked that her Bubbies would probably fight over her in heaven, but that she should go to their open arms.  Finally, I promised her that Daddy and I would find her in heaven and continue our cuddles when we get there.

Dr. Chitra Ravishankar, the transplant doctor, came to my side at this point.  She has a very maternal quality about her and I found her to be such a comfort at that moment.  As I looked around Sonia’s bed at all of the doctors and nurses, I saw love for my child.  Their tears were as much for their own loss as it was for mine.  I knew that I was surrounded by a family, and I found such comfort in that.  Chitra spoke calmly to me and held me as I took in the moment.  I thought I would melt right there, or at least faint, but with her strong arms and words, I made it through.

Slowly the doctors and nurses cleared out of the room and left me to hold my baby girl’s hand.  My friend Vicki Haller showed up shortly after this point to be with me and comfort me.  Around 7:00 pm, Dr. Tabbutt came into the room and told me to sit in the rocking chair.  She helped to unhook Sonia from almost everything except for the breathing tube.  At this point she placed Sonia in my arms and gave me time to say my final good bye and to kiss and hold her before she removed the breathing tube.  These were exceptionally beautiful and calm moments for me and I am forever grateful for them.  After a short time, Dr. Tabbutt removed the breathing tube from Sonia while I continued to rock her.  I sat with Sonia in my arms like this for over 3 hours.  I kissed her and touched her face and played with her toes.  She was wrapped beautifully in her blanket and it felt as if she were asleep in my arms.  During this time, I was surrounded by love.  Dr. Tabbutt, who had come from home twice for me at this point, sat by my side for a long time.  She talked about this journey with me as if we were friends.  We had been through so much together.  There was also a steady stream of loving nurses who came to say good bye to their girl and to me.  It felt so natural to be holding Sonia while surrounded by nurses and friends.  I know I will treasure those hours forever.

Of course the hardest part of this time was telling Jason.  When we realized Sonia’s situation, he got in his car to drive up to be with us.  He didn’t want to fly for fear of getting stuck somewhere or having to spend lots of time sitting instead of moving towards Sonia.  So when she died, I had no idea what to do.  Jason had been calling for regular updates from the road and while I didn’t want to tell him while he was driving, I knew he would want to know.  When he called I asked him to give me a call when he was pulled over for a complete update.  With Sonia still rocking in my arms, I gave him the news.  I believe it was calming and comforting to know that I was calm and that we were sharing such a beautiful moment together.

During all of this time, Rabbi Freid from Chai Lifeline was by my side as well.  Chai Lifeline is an organization which supplies families of children in the hospital with a steady supply of food and visitors.  They were an amazing comfort during Sonia’s life and even more so in her death.  It only took one call to the Rabbi to get him to the hospital.  From that point he took over answering all of the difficult questions.  He made all of the calls and provided as many answers as he could.  In a comforting way, he helped me to make the best decisions for my family, being ever so careful not to pressure me in any direction.  Knowing that this part of the process was being taken care of was such a relief to me.

Around 11 pm I put Sonia back into her crib.  I knew somewhere in my heart that it was time.  We put the bed back the way she liked it and covered her with her blankets.  Vicki stayed with me and comforted me throughout until Jason arrived around 1:30 am.  Together, we said our final good bye to our baby girl and walked out of the hospital together. 

Although this day was one of the most difficult in my life thus far, I feel confident that I will remember the good moments well.  If I had to say goodbye, I am glad it was this way with her in my arms surrounded by love.

The funeral will be Wednesday morning in New York.  We will post specific information later for those that want to attend.

We want to thank everyone for their love, prayers, and support through all of this.

After she was taken down, Dr. Spray found me to let me know where we stood. He couldn’t imagine what they would find in the cath lab and he didn’t think there was much else they could do. She isn’t a candidate for the Berlin Heart or ECMO again and he didn’t think she was even strong enough for transplant surgery at this point. Basically, it was looking very bad.

Thankfully, the transplant team is a strong one and I had the coordinator as well as the social worker and psychologist to sit with while we waited.  They brought in one of the head transplant doctors to speak with me and she confirmed what Dr. Spray said.  She left me to go down to the lab, which left me with more waiting.

Finally, the transplant doctor and Dr. Tabbott (our main cardiologist) came back into the room with an update.  At last they found the reason for Sonia’s deterioration.  They found what we have been looking for – a reason behind the combination of problems she is having.  The major pathway for blood to get to her lungs is blocked with a clot.  It is very bad, but there are a few things they can do to fix it.  The least difficult way is to inject medication into the clot through a catheter to break it up.  The plan is to do this and take her down again tomorrow to see if it is working.  It wont be a quick fix, but it is Sonia’s only hope at this point.  I pray she is strong enough to sustain herself until the clot is gone.

I will add updates as time allows.

Our best case scenario for tomorrow (besides finding a heart) is that they find the problem in the cath lab and are able to fix it then and there.  We pray God that you can either give our baby the heart she needs or get her to a healthy state in which she can wait for that heart.

It has really been such a rough day of ups and downs.  I was told in the morning about the doctors plan to paralyze Sonia to help her heart function.  I think this information would scare any parent.  Then I was told that didn’t work.  Next I was told that there was one more drug they could try to help her through this.  After lots of tests and waiting and some good and bad results, the doctor told me it wasn’t working enough.  She is still on this med, and it is helping some, but they have to do the catheterization.  I am so scared for my baby girl.  She needs that heart so badly at this point. She is swollen and sedated and still draining so much fluid from her chest tubes.  I am still trying to be positive for Sonia and to tell her she will get through this.  It is actually helpful for me to hear myself. 

I will stay with Sonia through the night.  They are putting in a new arterial line at this moment because the old one has gone bad.  Hopefully this will be a quick and easy procedure.  Please pray for Sonia!

The doctors feel that her deteriorating heart function may be due to some kind of blockage or obstruction in her heart.  The next treatment will be a drug that acts as “lube” and will hopefully help to overcome any blockage.

If that doesn’t work then they will need to perform a heart catheter to take a closer look.  While they are in the heart, they have some options for treatment if they find a specific problem.  The concern is that she is not in a good condition to have a heart cath.  There are some minor risks involved, but they are amplified with someone as sick as Sonia.

As a last resort, they may attempt surgery again and reverse her last procedure (the Glenn).  Sonia seemed to have had better function prior to this last surgery, so it may serve her better to return to that anatomy in her heart.  It’s not something they want to do, but we are really running out of options.  Part of the reason she is in this condition in the first place is because of the trauma of two long and intense surgeries.  Adding another would be a significant risk, but if it gives her more time to wait for a heart, then it will be worth it.

All of this will be a non-issue if a heart comes along soon.  She would go into surgery tonight if something was available.  I can’t help but feel like we are keeping a sinking ship afloat with whatever scraps we can find.  We really need that rescue ship to come and save us all.  Please God, rescue Sonia with a healthy heart so she can be healthy and happy again.

It is pretty clear that the clock is ticking.  We don’t know how much Sonia has left in her and we don’t know how long it will take to get a heart.  If there has ever been a time when this was in God’s hands, it is now.  I know that a heart for Sonia means that someone else must lose their child, and I wouldn’t wish that on anyone.  The transplant coordinator relayed to us a prayer from another family who couldn’t bring themselves to pray for someone else to die.  They asked that if a child somewhere must die, then please let their heart to go to our daughter.

She said some of what we are seeing is common for a child coming through a difficult Glenn surgery.  She said a lot of what we are doing is just trying to get her through this time while we wait for her to rest.  And although the transplant doc repeated our severe status to me today, our nurse said she felt confident Sonia will come off of that status soon. 

What is much different about today is this nurse’s approach to Sonia.  Instead of running to cover Sonia with cold towels when her temperature spikes, she is letting Sonia be.  Who knows what will work in the end, but it makes so much sense to me to try to let Sonia rest so that she can begin to recover.  She is going to try a cooling blanket which will detect Sonia’s temp with a probe and then react to bring her back to where she should be.  So far this has resulted in a much calmer Sonia.

The medical update is as follows.  Her chest x-rays are good and she is less iritable.  On the other hand her temp is much higher, although still not dangerous.  They are not going to remove the breathing tube today, and probably won’t until she gets this fever under control.  Although she has done a great job of peeing and getting rid of fluid, her upper body including her arms and head are still quite swollen.  Her poor little ears are even swollen.  I don’t know why the ears are my focus, but I keep telling her we will get them back to normal – as if that is her biggest fret.  Her blood pressures are finally stable, and her oxygen saturation is back in the normal range.  The major milestones we are looking to reach at the moment are good blood gases and a lower body temp.

As you can probably tell we are in much better spirits today.  We have continued to talk to Sonia throughout this process and to tell her about all of the great experiences awaiting her in her future.  We talk a lot about future wagon rides with her big sister and about all of the fun they are going to have together.  Mostly, I tell her not to listen to one negative word from these doctors because she is going to be just fine.  We are going to find her a great heart and she will be well before she knows it.

I thank my friend Donna so much for modeling this strength to me in the past months.  Her strength is amazing and has inspired me in the lowest parts of the past few days.  Thank you Donna!  And thank you to everyone everywhere praying for my Sonia.  Reading your comments and knowing you are out there has helped so much.  Thank you!

Jason is on his way back to NC today to get back to work.  It was very hard for him to leave, but I am so thankful for his love and support of our family.

Sonia appears to be trying to fight some kind of bug right now.  She has always been funny with her temperature, but it has been staying a little higher than normal and some other tests seem to indicate she has some kind of infection.  They have been sending blood, urine, and chest fluid cultures nearly every day now in hopes of pinpointing what it is.  This morning one of her older blood cultures came back positive.  She has been on strong antibiotics for several days now, so hopefully they have already prevented most of it from spreading and growing.  They will swap out a bunch of her lines this morning, in case they are the source of infection.  They might change some of her antibiotics to better target whatever grew in her culture, but for the most part it is a matter of waiting for them to have an effect.  The transplant doctors haven’t made any official change of status yet, but they did tell us that they would not accept a heart while Sonia is in this condition.  We wouldn’t hear if an offer came in anyway, and I think for our own sanity it’s better that way.  She really needs to get better before she’ll be ready for a heart.

The nurse also found some white fluid coming from Sonia’s new drainage tube.  It appears that she is having trouble digesting her food.  It’s all related to her organs not functioning at 100% due to her heart condition and her infection.  They will have to start her on a special nutrient formula that is already digested.  It’s not as good as breast milk, but it will at least provide most of the nutrition she needs.  It’s not necessarily a permanent thing.  God-willing, she’ll get healthier and she can go back to breast milk again.

I can’t help but feel that Sonia is slowly deteriorating in front of our eyes.  We really need to convince ourselves that it is just another dip in this crazy roller coaster.  Once she can get over these hurdles, I know she’ll be able to get much better.  It just gets harder to see that when she’s moving in the wrong direction.  Sonia is such a fighter, but sometimes I feel like she can’t catch a break.  I’m starting to feel like Tevia from Fiddler, when he says something to the effect of, “I know we’re the chosen people, but every once and a while couldn’t you choose someone else?”

UPDATE: The doctors just did rounds and they discovered that Sonia has the same issue with her left lung, so they will be putting in another drainage tube on that side as well.  The tubes will have no effect on her coming off the ventilator, but the infection will most certainly delay it.  Some slightly good news is that the culture that came back positive was from a catheter that was removed, not from a culture drawn from within her.  It still probably spread to her, but somehow it seems better that it was from something external.  The fact that the source itself was removed helps too.  It’s pretty much official that Sonia will wait as a status 7 until she gets over the infection.  She won’t lose any time on the recipient list, but she won’t accrue any either.  To get a heart, Sonia will have to be on so many immunosuppressants that any infection she has at the time of transplant would likely kill her because it could spread with no resistance.  The doctors assured us that we are not at a critical state and that with the prescribed treatments, she should be able to come back OK.  It will just take some time.  Job #1 is no longer rest, but fighting this infection.  We go nowhere until that’s beaten.

UPDATE #2: This should give you an idea of what we deal with on a daily basis.  We have yet another change of plans.  Some good, some bad, and some somewhere in between.  Due to the infection only being in the cath and not showing up in any of the more recent cultures, they are not going to change Sonia’s recipient status.  There’s more to it than just the infection though.  Finding a heart involves a lot of variables.  There is always a balance of waiting for a perfect match (and having less rejection issues) and taking what you can get when time is of the essence.  It’s a sliding scale and it varies each and every day depending on the patient’s current condition.  The transplant docs feel that Sonia is closer to the critical list right now.  They feel that taking something less than perfect now is a better bet than waiting for who knows how long for the perfect match.  While she has some things going for her in regards to what kind of heart she can accept, there are a lot of complicating factors due to her surgeries that would make them far more selective if time allowed for it.  It’s all in Gods hands right now, so we just have to wait and see.

On the flip side, they are still planning on extubating on Saturday.  They feel like she is getting rest now and the two drainage tubes will have a big effect on her ability to make it off the vent.  The concensus is that if Sonia can make it off the vent, it will make lots of things better for her.  If that all goes well, maybe she can move a little more towrds the “waiting for the perfect one” end of the recipient scale.

It’s all pretty hard to deal with.  Hearing from the doctors that they are worried that she may not have time to wait for a heart and that they need something soon is not a pleasant thing.  Sonia has fought so hard for so long.  She just needs to dig down deep for these next few hurdles and then she can get her besheret heart.

The problem is that it takes a little more work to be off the vent and Sonia has been working her butt off lately, fighting fever and pain.  Her blood pressure had been higher than they like it too.  So the current plan is to put her back on the pacemaker in order to keep her blood pressure lower, keep her more sedated to let her entire body rest, and keep up with the diuretics to get her slightly more fluid-negative.  They will maintain this for at least 48 hours and reevaluate taking her off the ventilator.  In short, she’s been working hard and on a “down slope” and they want her well rested and on an “up slope” when they extubate.

It sucks that she has to stay on the vent, but at least she will have some consistancy over the next couple days.  Coming in every morning and going through this whole process is probably as tiring for her as it is us.