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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.

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.

In The Hospital

I have not sent out an update in a while.  Avigayil has had a rough winter.  She has spent more time sick than not. Most recently she has been sick for the past month. She has had 2 rounds of antibiotics and multiple rounds of steroids. The steroids turn her into a tiny manic depressive.  She gets a high from them and goes a bit nuts until the exhaustion of being sick takes over and she passes out on the floor in a very small heap of heavily breathing baby.


From Shabbos afternoon until Sunday morning she had 5 episodes of hypoxia, turning blue. She lost half a kilo in 2 1/2 days.  She is currently back in the hospital.  Her pco2 is very high and she is on the Vapotherm breathing machine. Yesterday they told us that she has influenza  (despite having had her flu shot) and RSV (AGAIN! ). Well, at least now we know why she keeps turning blue.

Please continue to daven for Avigayil bas Rivka Batya.  Thank you.

Rosh HaShana

As my baby lay fighting for her life, I stood in the shul of the hospital on yontif next to other parents who's babies where also barely holding on. We begged Hashem for the life of our children and the lives of our neighbor's children. Our tears fell like rivers to the Rabbenu Shel Olam as we cried out for mercy. We beseached Hashem "Please bring the moshiach! Why Hashem, are there so many other mothers like me? How many mother must cry for their children until it ends? How much longer must you suffer in pain along with your children? Please Hashem, let this one's baby survive the next surgery, let this one's baby survive the night."

As we approach Rosh Hashana we all have a special opportunity to help make that happen. There is a belief in Judaism that when one davens for another person in a similar situation, his prayers are answered for his friend and for himself. This year, as we stand in judgment, take a moment to think about thoes in your community suffering similar trials as you. The one who needs a job or hasn't yet been blessed with a spouse or with children. The one who needs a yeshua that you also need. Stand before Hashem and advocate for your friend.

We would like to wish everyone a Shana Tova. It should be a happy and healthy year for everyone. 

Still Sick

Avigayil is still sick. She is at home but still on oxygen all day. Her fever came back and the doctors started her on Zinnat, a particularly strong antibiotic. She seems to be responding to it as her oxygen requirements are dropping and her fever is much lower however, her lungs are still full of mucus and she is wheezing like mad. Please continue to daven for Avigayil bas Rivka Batya.

Home

B"H Avigayil is home. She is very tired and sleeping most of the time and still having difficulty breathing but we can do everything she was getting at the hospital here at home. She is still on steroids and oxygen and getting larger than normal doses of ventolin. Every time she gets one of these bad viruses I feel like the recovery time gets longer. We know that this winter will be rough because of her new exposure to children. We are going to try to be hyper vigilant and try to catch things early. As they say, there is no way around the coming storm but straight through. Our home is that it will be light rain as opposed to a hurricane.

Big step forward and a step back

Avigayil took a HUGE step forward this month. She started gan! It took a few days to adjust but she has really been enjoying the interactions with other children and of course the big slide. All the way to gan she says "Slide. Slide. Love slide." She brought home her first project which she was proud to show us and her first gan related virus.

Which brings us to the step back.

We are currently in the ER. Avigayil has viral pneumonia and a partially collapsed lung.  We are expecting this winter to bring challenges. For the first time she will be exposed to social situations and need to learn to interact with other children her own age. She will also be exposed to germs more regularly and frequently.

Growing

All my kids have been small. Small babies are not new to me. However, like most everything else, Avigayil took this to a new level.  She is now almost 2 1/2. Yesterday, we finally put away her 12 month size clothing. The challenges of being a preemie.

On the weight gain front Avigayil has been the same weight for over 2 month. This is not hreat as we want her to hrow but also good because she was sick during that time and didn't lose weight.  Thanks to the many of you offering to donate a pound or two! ;)

You Might Be a Preeemie Parent If

So I saw this today and thought, wow, that is so true!!



B"H Avigayil is almost back to her base line. This infection really took a long time for her to recover from but had it happened a year ago we would have been in intensive care for sure. It's hard but its another sign of how far we have come.

Going Home

B'H Avigayil is home now. We are working on getting continued respiratory therapy at home. As far as hospitalizations go, B'H, this one was fairly benign.

Hello, My Old Friends

Avigayil was admitted to the hospital today.  Hopefully she will stay for a few days,  get some respiratory therapy and get over the virus that is causing the problems.

Days Since Last Hospital Trip - 2

It's been a while since my last post. I keep meaning to write but there has been a lot going on in life that has kept us very busy.

After a 7 month stretch without a hospital visit, Avigayil was back in the ER on Wednesday. I was afraid that after so long away from the hospital our first trip back would be more traumatic, but it actually felt very routine, almost like we had just been there last week. We were worried about pneumonia but she seems to have some very bad virus. She has been sick for about 2 weeks now and is back on the oxygen. She is on steroids and antibiotics. So far they are not helping much. We are hoping that this will not get any worse. Please continue to daven for Avigayil.

Update

I have been putting off this post for a while. However, there is no denying it. B"H, Avigayil is improving! One day she was sick. All week she continued to deteriorate. Finally on that Thursday the doctor said that we had no choice but to bring her into the hospital. She was not breathing well and she had been crying or hours. I took her off her machine and put her on O2 for the trip to the ER. Immediately she stopped crying. On the way to the hospital her breathing started to improve. By the time we got to triage her saturation where normal and by the time she was in a bed she was sitting up and playing with the doctors. It was nothing short of a miracle.

We went home on only O2 and on Sunday weened her from that. Since that day 6 weeks ago, she has mostly been breathing on her own. She has needed less medications and has not gone back on the machine since that day. She only uses the oxygen a few time a week.

As soon as she got off the machine, Hashem saw fit to show us another miracle. Avigayil is eating almost all of her meals by mouth. She only uses the tube when she is too tired or is sick. Once she started doing so she started to gain weight as well. She put on an amazing half a kilo in 3 weeks!!

We still are waiting to hear back from the cardiologist about her heart study and tomorrow we will go to the orthopedic board to decide about leg braces (I hope they will say no). I will try to keep you updated more frequently. May Avigayil continue to improve and may all of klal yisroel continue to see such nissim!!