Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Tuesday, June 26, 2018

A Mother's Promise

The trauma of a birth unlike others never really fades. The indescribable fall from joy at hearing "Mazal Tov, its a girl" followed by silence, the absence of your baby's cry is so life changing that it becomes a part of you forever. Time moves on, The little girls' health improves, but the battles that you have fought have left scars on your heart that change the essence of who you are. Words like gratitude, health, and happiness take on new meanings.

I wish these were battles that we never needed to fight. That being said, I wouldn't trade the personal growth that we have gained for them.

Yaakov Shwekey just released a new song that really touched this cord with me. He has long been a favorite in my family and especially for Avigayil. Since her time in the NICU playing his music has always had a calming effect on her and her breathing and heart rate. During every hospitalization, we would bring her his music on an MP3 and small speakers and play it at her bedside. Somehow, this always helped her health to improve. I will forever be indebted to him for that. For all these reasons and so many more, this new song has really touched me.

I have met so many mothers over the past 4 years, all fighting different battles, all fighting the same battle. Each is as unique as they come. Yet each has the same qualities: persistence and determination, a quiet strength, the ability to continue the fight even when physically and emotionally drained, extream loyalty to the needs of her child. Although there are days that are harder than others, and there are days that we may feel overwhelmed, sad and out of control, I have yet to see a mother faced with her child's challenges fail. Honestly, having gotten to know so many of these women on a personal level, I don't think I ever will. 

Thursday, May 31, 2018

Everything Went Well

B"H the procedure went better than expected. Avigayil was quite annoyed to be fasting and very concerned that there would be clowns. All the way to the hospital she kept saying "Right Ima, they don't have clowns?" "Well, they do, but we can tell them you don't want one." "NO Ima, they DON"T HAVE any clowns, RIGHT?!" Um, ok. In fact, there was a clown in the waiting area but she hid from him. He knows her and did his best to ignore her and not get close. Then we went into the OR were she made Dr. Joseph promise he wasn't going to bring her any clowns.

The procedure itself was fairly quick and then we stayed in recovery for a while. She did have a little trouble breathing after but nothing too serious. B"H she woke up and was able to eat and after a few hours, we even went home. SO much different than last time!

We are waiting for results which take about 24 days.

Thank you, everyone, for your teffilos.

Sunday, May 27, 2018


Avigayil is scheduled for a bronchoscopy on Tuesday morning Israel time. While this procedure is supposed to be a simple one it is being done under general anesthesia and with Avigayil's history with anesthesia, we are understandably nervous. This test is being done in order to try and see if she now has permanent lung damage and what is going on in her lungs. Please take a few minutes to say some extra teffilos for her that the procedure should go well and that the results should give us some clarity, especially on Tuesday morning. 

Monday, May 14, 2018

Yes, I know Its Been A While

Its been a while since my last post. B"H we have been busy with life and mostly with good things. Avigayil has made many improvements. Most days she breathes on her own without even oxygen. When she is healthy, she behaves and looks like any other kid (just much smaller). Weight gain has and continues to be a struggle. She still drops about 10% of her body weight every time she gets sick and then spends months trying to put it back on. She still gets sick at the drop of a hat and when she does she can go from a bit sick to critical very quickly. In fact, she spent most of the month between Purim and Pesach in the hospital, fist with a virus that put her in PICU and then shortly after coming home, she went back with the flu. Every virus and infection is still a very big deal with her.

Our new challenge is discovering if her lung damage is permanent. Her doctors are hoping to do a bronchoscopy soon to establish if she now has a condition called PIBO - Post-Infection Bronchiolitis Obliterans. In other words, she may have been sick so often and for so long that the small airways in her lungs have been obliterated. This would mean that she would always be susceptible to viruses and infections and that they would always have a much bigger impact on her than on others. It would also explain why she has not yet gotten better.

Another development has been Avigayil's new and intense fear of clowns. Every time she sees one she is in the hospital feeling terrible and then someone comes and sticks her with a needle or does some other unpleasant procedure to her. I can't really say that her fears are unfounded. Most of the fear seems to focus on the red nose. During her last hospitalization, all the clowns had a meeting and made an effort to take off the noses before visiting her. I was touched by the gesture, she was not quite convinced.

Another recent experience has been a reminder of how different life is for her. Avigayil had her first dentist visit. First off, she didn't quite understand the concept. It was hard for her to believe that there was a doctor who was only interested in her teeth and that she wasn't going to have blood drawn or be hooked up to any special breathing equipment. Afterall, what kind of doctor could she possibly be if she didn't even have a stethoscope!

After a lot of anxiety in the waiting room and much reassurance that in this office they don't use IVs and that this wasn't a hospital, we went in to see the dentist. Avigayil was confused about the chair in place of a bed but climbed in when told. She looked at the doctor with big teary eyes and a quivering lip and a look of sheer terror.  (She hadn't even seen the drill yet at this point.) The doctor again reassured her that this was not a hospital and she just wanted to look in Avygayil's mouth.

Well, surprise, surprise, Avigayil has two cavities. Honestly, considering that she is on a high calorie, high sugar diet I'm surprised it took this long. This lead to the discussion of anesthesia. As we all know Avigayil and anesthesia don't get along. All anesthesia depresses breathing and there is no way to know how Avigayil will react to any given type but she already has a history of severe reactions to some types, meaning we need to be careful with everything. There are two types of anesthesia used here with children in dentistry. The first is a liquid the child drinks. There is no antidote to this type of anesthesia so that is clearly out. The second is a gas, commonly called laughing gas. This also slows and depresses breathing. While preferable to the liquid, it should only be used in her case if absolutely necessary.

The third option is to do nothing. It is a baby tooth with will eventually fall out. As long as the cavity doesn't get worse, get infected or start causing her pain, the doctor explained, we could just try to wait it out. I liked this plan.

However, the doctors' office wasn't comfortable saying this would not cause long-term damage without sending her to a specialist. The specialist was located in....that's right, a hospital. Great, there goes all our hard work convincing Avigayil that dentists were safe.

So we showed up at Hadassa (of course they don't have dentists at Shaare Zedek, that would have been too easy) and what is the first thing we see? A medical clown! All illusions of a quite visit are out the window.  You could almost see the look of betrayal on Avigayil's face. Finally, after a long wait and a repeat of the first dentist's visit's anxiety and fears we go in to see the dentist. She concurred that we could wait but added that if we do have to deal with the cavity, they will do it in an operating room with an anesthesiologist present and a space in PICU reserved "just in case".

All this for a cavity.

Sometimes people ask me if life will ever be normal for her. They ask if she will ever experience things the way others do or if there ever be anything that will happen for her easily? I think about their questions and the unspoken implications behind them. Then I see her smiling face. Despite everything that she has been through and everything to come, she is happy. She does see this as normal. This is just her life and this is how Hashem wants it. Rebbitzen Heller once told me something about the efforts and sacrifices we make for parenting in general that I think about often in regards to Avigayil. "This is what Hashem wants from you right now." This is what Hashem's plan is for her and for us. And so we will go along with it. Really, what other choice do we have? The only option is whether or not to experience it with simcha, happiness. In that regard, I think the choice is fairly clear.

Monday, January 9, 2017

Life Blood

I'm sure most people don't realize this but January is Blood Donner Recognition Month. Donating blood is (almost) painless and usually takes around 20-30 minutes. Some people have never done this and some people donate every two months.

While in the NICU Avigayil received several blood transfusions. They where life saving. Somewhere out there there is a an anonymous person walking the streets. He or She does not know it, but I owe them the greatest debt of gratitude any parent could have. He or She walks around going about daily life and has probably long forgotten giving blood. For me, every time I look at my daughter I will bless that person. Without their selfless act she would not be here. Mr./Mrs Anonymous, you are my hero!

I would like to take this chance to encourage anyone who is eligible (eligibility depends on criteria in your country) to step up and save a life today! I personally can't think of a better way to spend half an hour. In Israel you can donate blood by contacting your local MDA station or hospital. In the US contact your local Red Cross or hospital.

Leave me a message and tell me about your blood donation experience. I'd love to hear it.

Friday, December 30, 2016


B"H Avigayil was discharged! She is so happy to be home with her siblings and they are happy to see her too. She still has a way to go but is doing much better. There is a concern that she may have had a setback in her breathing since she was sick for so long but we will not know for at least a couple of weeks if this is her new baseline or if she is going to recover further. In the meantime we just keep davening.

Wednesday, December 28, 2016

Channukah and Chesed

Mi kamocha Yisrael, Who is like you, Yisrael! The pediatric department is always a big recipient of chesed but when there is a holiday people seem to go all out. We came in on the first morning of Channuka. That first day we where offered no less that 5 sufganyot (traditional jelly doughnut ) and given enough cand and pekalach (bags filled with treats and prizes) to last all week.  It didn't stop on Sunday though. Monday and Tuesday brought more sufganyot and pekalach, decorated cookies, toys, bubbles, driedles that light up, a tira (Avigayil has been wearing it ever since) and a box with 3 pairs of earrings  (her sisters will enjoy that).

We have been visited by multiple people dressed in costume, clowns (part of Shaare Zedeks amazing medical clown program), a goup of girls dressed as Minnie Mouse, groups of people singing and playing guitar, and more. These visitor come from all walks of Israeli society from Charradi/Chassidish to secular. Some are from seminaries and yeshivot, some are from local companies, schools, youth groups, and social clubs. Some people just come on thier own wanting to make this time a little happier for the children.

As some of you know we moved to a new community and city this summer.  The amazing women of Beitar Illit are sending dinner to the house every night. Some friends from Har Nof have come to visit in the hospital as well. One fantastic friend and former babysitter came to stay with Avigayil for an hour so I could have a break and run to the shopping center across the street.

So many times I have been asked how we go through these challenges without family.  My answer is always  "We make family. " These are some examples of that. Bh, It is hard to be truly alone in Israel unless you work hard to be.

Avigayil has been improving. They are hoping to move her from the machine to oxygen today.  We are hoping that her pco2 has come down. They will be testing that again today as well.