Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Sunday, December 21, 2014

There's a baby in ICU at Haddassh Har Tzofim that is in desperate need of "L-emental" formula, they say it is pikuach nefesh.  Made in USA and hard to get here.  Anyone that knows where to get it or has is asked to call 0529580068.

Round And Round We Go...

Back to the hospital. Avigayil was having trouble keeping her o2 sats up so we are back for another overnight stay.

Wednesday, December 17, 2014

Home Again

We are home again, B"H. The diuretics did not work as we had hoped but restarting the steroids did. She is breathing much easier.

We did get a chance to see how well she knows what is going on. When the doctors came to take her blood she started to cry, even before they started. She also took the doctor's glove and threw it! That's my girl, it's that determination that is keeping her going.

The good news is that she has started to eat!! We are working with the feeding clinic and have started trying to get her to eat by mouth again. The hope is that we will at one point be able to remove the NG tube. So far, she is doing well with it - when she is not over tired or having trouble breathing.

Sunday, December 14, 2014

And we're back

Friday Avigayil was discharged home in time for shabbos. Today, 2 days later, we found ourselves in an ambulance on our way back to the hospital again.

She is getting treated with diuretics to hopefully help drain some of the fluid in her lungs. Depending on how the night goes they will decide if we can go home tomorrow or if she needs to be admitted.

Thursday, December 11, 2014

Update

Avigayil has been stable for the past 36 hours. She had a good day today and is finally breathing better. She is responding to the steroids.  Tomorrow she will have a trial on just o2 to see if she can make the trip home (her new machine does not work on batteries ). If all goes well we hope to return  tomorrow to home hospitalization.

Tuesday, December 9, 2014

After a week at home, we are back at the hospital. When we got here Avigayil was barely breathing. She is currently listed in serious condition. Please daven for Avigayil bas Rivka Batya.

Friday, November 28, 2014

Where We Are Holding

Avigayil's breathing on the new machine is like night and day. Her breathing slowed, her oxygen saturation where more stable, she had more energy and slept less (she was sleeping more than 20 hours a day). She even started to play with things and smile a little. This was a big one for me since she is generally such a happy smiley baby and she hadn't smiled in over 3 weeks.

Then she got sick.

She has a fever, vomiting, diarrhea, difficulty breathing. She had been doing so much better and they are not sure yet what caused the complete turn-around. Several doctors have seen her including the head of pediatrics. They are trying to work out what to do with her. In the meantime she is on a special food for the diarrhea and on IV fluids because she was dehydrated and losing weight.

On the side of the insurance. They told me today that they are approving a package for us that will include not only all the machines that she needs but also home visits from doctors and nurses. We are really happy with this development and we think  it will do her good.

In the meantime, we are in a very nice large private isolation room and are now just waiting for her to get better so we can go home. Everyone (including the insurance company) wants to be cautious about sending her home. They only want to do it once she is doing much better. So we will wait. Please keep daving for Avigayil bas Rivka Batya.

Monday, November 24, 2014

Lifeline

Avigayil was readmitted yesterday to be put back on vapotherm ventilation. She is switched over but has been having a rough time.  In general she doesn't recover well from anything and this was a major change.

While this is a major setback for her, I know that this is what she needs right now. When they first brought in the machine I had an unexpected rush of emotions, not because of the setback, but because of the machine itself.  For months this machine was my enemy and my best friend.  It kept my baby alive, but it kept her in the hospital far from home.

This time around,  hopefully things will be different.  We are hoping to get the home machine appoved quickly and to see improvement from it. After months of seeing no improvement in her condition and weeks of watching her deteriorate we are holding on to what we hope will quite literally be a lifeline for her.

 Please keep her in your prayers.

Sunday, November 23, 2014

Update

It's been a while since my last update. Avigayil has been fairly sick in the last few weeks and that has been keeping me very bus. We have been to the hospital 4 times in the last 3 weeks and to the pediatrician numerous times. Our pediatrician and pulmanologist are now on a first name basis and calling each other's cell phones. (As Dr Gross put it "You know its not a good thing when I call his secretary and she says, 'oh this must be about Avigayil.'")

We have had some scary episodes with her breathing and her heart rate. B"H (Thank G-d) the cardiologist says that her heart is ok and is only being affected by her breathing. Her oxygen requirements have been much higher than normal recently and she is very uncomfortable all the time. So, to make a long story short, it looks like she may have to go back on ventilation. She is just having a very rough time on O2 only and the theory is that if we give her more help to breathe her lungs can have a better chance to heal.

We are waiting for her pulmanologist to decide how and when to bring her back in but it will most likely be soon after she finishes her current course of steroids.

Meanwhile, the results of Hand to Hold's Preemie Power contest came in. While we did not win the library for the hospital we did get a special prize for most votes. I wish we could have helped the hospital, but knowing that so many people care and took the time to help us really raises our spirits, especially now, when Avigayil is having such a rough time. Thank you to everyone who voted. We will try again next year.

One last thing I wanted to mention. I had a special post planned for International Preemie Awareness Day last week but, as most of you know, there was a horrific terror attack in our neighborhood that day. Between Avigayil being sick (she was admitted to the hospital the next day) and neighborhood being in turmoil and mourning, I did not get to finish it and post it. I hope to post it soon. Please forgive my lateness.  

Monday, November 3, 2014

WE DID IT!!

Hand To Hold announced the finalists in the Preemie Power contest. Avigayil made it!!

http://www.preemiebabies101.com/2014/11/2014-preemie-power-finalists-selected/

Thank you to everyone who voted for her! She is now competing against two other babies to win her category and the against the other categories to win the library. The final rounds of voting are done by NICU professionals. We truly hope she will win for the hospital.

Thank you again to everyone who supported her in this. 

Thursday, October 30, 2014

Equipment

Continuing with our theme of preemie accessories, today you get a look at some of the equipment that Avigayil brought home.

Like most babies she has a baby monitor, swing, bouncer, etc. However, unlike most babies, Avigayil also has some other equipment.

This is "the Doggy". It is her nebulizer. Her constant companion. Normally, she uses it every 6 hours but when she is sick she uses it every 4 hours. Ultimately the doctors want to get her down to only every 12 hours. Unlike every other baby ever, Avigayil LOVES the nebulizer. Unnatural, I know. Sometimes we turn it on just to help her calm down or sleep.



Next is her pulse/ox monitor. This goes wherever she does. It measures her heart rate and oxygen saturation. It works by using a sensor or probe attached to her foot. It measures based on her blood vessels. Blood vessels are small, baby blood vessels are even smaller and preemie blood vessels are the smallest of all. What that translates to in real terms in LOTS of false alarms. So fun, especially at 3am. We will definitely miss this when it goes. On the other hand, your heart rate drops when you are asleep. How many other parents get proof positive that the baby is asleep enough to move without waking up?




This monster is our oxygen concentrator. It pulls O2 from the air and concentrates it to help Avigayil breath.


He brought his friends the large back up O2 tank and the portable O2 tank.




This is the feeding pump. It lets us feed Avigayil through her NG tube at the amount and rate that we choose (or really the rate and amount the doctors choose).



Last but not least is the scary looking torture device known as suction. This is like the bulb syringe on steroids. It's used to suck junk out of her nose and mouth. As you can guess this is Avigayil's favorite machine. No, not really. She wishes it would take a long walk off a short pier while plugged in.


Here is a glimpse of the bedroom (without the nebulizer or suction in place). The crib is also a special small crib that we got from a medical equipment rental.


****REMINDER: Please vote for Avigayil at http://handtohold.org/donate/events/preemie-power/vote-for-your-favorite/ She is now listed on page two. You can vote once every 24 hours. Voting ends tomorrow.****

Monday, October 27, 2014

A Trip to the Pharmacy

Babies generally come with stuff. Lots of stuff. Any parent will tell you the amount of stuff in your house increases exponentially with each child. When your baby is a preemie however, multiply that times ten. Over the next few posts I would like to explore some of the unique accessories that come with preemies.

The other day Dov went to the pharmacy. His goal was to get everything she needs for one month. Here is what he bought.


He failed.

Believe it or not, this is actually NOT enough.

Lets go through it.

1) Sterile water. We use this in Avigayil's Oxygen concentrator as well as to flush her NG tube after giving her medications or feedings. There is only one bottle here. She goes through about 4 a month.

2) Granuflex. This is what we put on her face under all the tape. It is made of silicone and is meant to protect her skin.

3) Neocate. This is Avigayil's prescription formula. It is completely sterile and  meant to help her gain weight. She goes through 6 cans a month (hence the case). It is crazy expensive (about $100 per can) but fortunately our insurance covers about 85% of it.

4) Vitamin D.

5) Polycose. This is an additive meant to add calories to Avigayil's food. The goal is to help her gain weight without overwhelming her body with too much fluid.

6) Flixotide. This is a steroid. It is inhaled and with long term use will hopefully help Avigayil's lungs to get better.

7) Omerprozole. This is a anti-reflux medication. It has to be specially made for her each month.

8) Ventolin. A broncodiolator. Ventolin is supposed to be an as needed medication to help Avigayil breath when she is having trouble, but at the moment she is still using it every 6 hours. There is only one bottle here. She needs 2.

9) Saline. This is used in the inhalations as well. There is only one box here. Avigayil goes through 4 or 5 a month.

10) Ferripil. This is an iron supplement to treat her anemia.

11) Hand sanitizer (peach scented). We use LOTS of this. Again there is only one bottle but we usually go through a few every month.

12) Coban. This is a nonadhesive wrap used to hold on the pulse/ox probe.

She also needs a lot of disposable items which we will go through in another post.

The great thing about this is that on my counter there is well over $1500 worth of pharmacy products. Because of our amazing insurance we payed less than $200 for all of this.

Sunday, October 19, 2014

Please Vote For Avigayil!!

Please Vote For Avigayil!!
Avigayil is trying to give back! Hand to Hold is an organization that works to raise awareness and support of preemies. They are having their annual Preemie Power contest and Avigayil is in it!! She is in the 0-6 month category and is trying to win a resource library for Shaarie Zedek, the hospital that saved her life.
As far as I can tell we are the only entrant from Israel and in our category are one of the babies who spent the most time in the NICU.

Please help her. Voting begins Friday, October 17, 2014 at 12:00 p.m./noon Central Time and closes at 12:00 p.m./noon Friday, October 31, 2014 Central Time. You may vote for any or all of the entries once per day. Once you vote, you may vote again in 24 hours from the time of your first vote. (For example, if you placed your vote at noon, the next time you could vote would be noon or after the following day. If you tried to vote at 8 a.m., it would tell you you’ve already voted.)
Remember you can vote for her once a day to help her win. Please check it out at http://handtohold.org/donate/events/preemie-power/vote-for-your-favorite/  (She is Smiley Gayily at the bottom of page 1)

Wednesday, October 15, 2014

Heartbeats

We had a bit of a scare on Monday. Sunday night we hired a nurse and went out for the first time without her since she came home. When we got home I noticed that Avigayil's heart rate was a bit high. Over night it continued to climb reaching 200-230 beats per minute. This is extremely high. When she sleeps she is usually around 100-120.

In the morning I called the pediatrician who had me bring her right in. By the time we got to his office she was having trouble breathing as well. He sent us to the hospital.

By the time we got there her heart rate was already starting to calm down a bit. She got an inhalation, an ecg, chest x-ray and cardiac monitor.  The doctors don't really have an explanation for why it happened, but they feel it has to do with her breathing. We discussed with the doctors the possibility of exploring other option to improve her breathing. All would be setbacks, but hopefully in the end they would help her move forward.

After a few hours of monitoring her heart rate seemed to be coming down and the decided to let us go home. She has an appointment to be hospitalized on Monday for tests. It was supposed to be for one night, but now it may be more. We will have to see what the doctors say next week.

For now we are home enjoying the rest of the holiday with the family.

Tuesday, October 7, 2014

New Israel Preemie Parents Group

I started a new yahoo group for English speaking preemie parents in Israel, conveniently called Israel Preemie Parents. If you are a preemie parent in Israel feel free to join and/or to pass it on to anyone else who can use it. It can be a great way to support each other and share resources that are more locally relevant.

Here is the link to join:
https://groups.yahoo.com/group/IsraelPreemieParents

Sunday, October 5, 2014

Dear New NICU Mom

A couple of days after Avigayil was born I found this amazing letter. It was originally posted on an incredible blog called Life with Jack. (I highly recommend that you check it out). To say that the letter touched me is not enough. It changed me. As I lay in my hospital bed reading it I cried. I had not cried once until then. Not during the pregnancy, not when they told me we would have a preemie. I didn't cry when I had the surgery or when I was put on bed rest after. I didn't cry when they finally decided to deliver, nor when she was first born. I had the emotions, but the tears just would not come.

Until this letter.

Not only did she so truly understand how I felt, but she gave me permission to feel that way. She gave me permission to grieve and to cry. It was a very cathartic moment for me. I cried for a long time. And then I felt better, stronger, more capable of dealing with what lay ahead.

Today, I would like to share this life changing letter with you. Please pass it to anyone who can use it.



Dear new NICU mom,


It’s a place you likely didn’t expect- sitting in the NICU, watching your tiny baby fight for it’s life. It’s a place you wouldn’t choose. And if you’re like me, you had every intention and dream of holding a healthy, plump baby on your chest shortly after delivery. A dream of leaving the hospital, baby in tow. And now, here you sit, watching your fragile baby through a plastic box.

I wish there were magical words that I could write to make this situation better, but I know from experience that there are no words to do that. What I can do is share with you from one NICU mom to another, some words of encouragement.

When our son was born at just 23 weeks gestation, we were terrified. We knew babies were born premature, but never knew they could be born and survive this premature. We had no idea what we were facing.
You’re likely going to be bombarded with folks who care about you dearly. Folks who want to help you. Folks who want to fix the situation and take away your pain. Occasionally they’ll say things to you that will hit a nerve. They may be under the assumption that your baby is just in the NICU because he/she needs to grow a little more (not knowing the battle your child is in). They may demand you stop grieving and ask you to be glad that your baby is still alive. Some may go as far as to say to you horrible things such as, “At least you didn’t have to go to the end of your pregnancy and be miserable” (True story.)
But the truth is, unless they’ve been there, unless they’ve walked this, they won’t know that your heart is broken. They won’t understand that you’d do anything, go through anything if it meant you could just carry your child to term and save them this pain. And they won’t understand that in an instant, your dreams have been shattered and you’re questioning how you’ll ever pick up the pieces, glue them together and start again. You don’t need someone to remind you to be thankful-- you are. It will take some getting used to, but often times you’ll juggle being thankful for your child’s life while being scared to death for their future. That’s ok.
You see, some of us have been there. Some of us are still there. And we want to tell you one thing: all those feelings, those conflicting and sometimes awful feelings, they’re normal. Yep, totally normal. And no, you don’t need to explain them to us. We get them. We’ve had them. We’re still having them.
Plain and simple: the NICU is traumatic. All of the uncertainties, the obstacles your child faces, the pain, the statistics--- it all takes it’s toll. But you will emerge. You will find a hidden strength that you never knew you had. And you’ll see the strength of your child. You’ll grow amazed and proud of them as you watch them win their battles.


As you navigate these new waters...
...Don’t be afraid to speak up and speak out.  Find your voice and share your feelings and concerns.

...Allow yourself the opportunity to correct others who may misjudge your fears of the future as an inability to appreciate the miracle of your child.
...Grieve. Lots of things have been lost along the way- a normal pregnancy, a normal birth, a normal departure from the hospital... the list goes on and on. Grieve it all. You’re experiencing loss, a huge, unimaginable loss.
...Know that you can’t prepare yourself for the future (after all, no one can predict it) and force yourself to stay in the present. Deal with the hurdles of the day.
...But when your mind does start to ask the “what ifs” about the future (and it will), when you start to doubt the path you’re on, don’t beat yourself up for it. Face those “what ifs” with courage and know that the strength you’re discovering will emerge as you face each and every new trial.
...Remember that your child, not statistics will determine his/her course (these stubborn NICU babies rarely follow the predicted path).
...And finally, know that you’re not alone. Some of the most therapeutic times are found in the NICU when moms begin to connect. Share stories with each other. As you begin talking, you’ll likely find that these women who you thought were so different from you, have now become the only ones who understand your heart. Don’t be afraid to talk to them. Chances are, they’ll appreciate knowing that they’re not the only ones feeling this way either.
This journey that you’re on, it’s a battle. It’s likely to take some turns. You’ll make advances and retreats. Sometimes it will feel like you haven’t left the trenches in weeks. But you will emerge. You will make it. The battle will end. And one day, you’ll look back on this time and it will be a blur. A new normal will emerge, you’ll begin to find happiness and good times again and you’ll look on your scars knowing that each one represents something you have conquered.
With Love,
A former NICU mom

Want to pass this letter on to a NICU mom? Click here for a printable version.

Friday, October 3, 2014

Pediatric Day Hospital

Wednesday we had Pediatric Day Hospital. We saw many specialists, did x-rays and blood work. She had a sillia biopsy (yep, a nose hair biopsy, did you know there was such a thing?). It involved taking what looked like a tiny bristled bottle brush and putting it up her nose then twisting it around in order to pull out nose hair and skin. They also suctioned fluid from her nose and fluid from her lungs to send for cultures. As you can imagine, Avigayil was not a fan.

Her PCO2 was "impressively high" again (not a good thing). It could be just because she is sick. We are waiting for the results of the rest of the tests. We should have them on Sunday.

Some changes were made to her feeding. The biggest change is that she no longer takes any food by mouth. She is feed exclusively PZ (through the tube in her nose). They also set her up to have a continuous feed at night. This is really for our benefit. Until now we had to get up every hour or two to deal with her feeding pump. (Although, since she has been sick and waking up vomiting all night I still haven't gotten much sleep).

We are waiting for appointments for a CT and a broncoscopy. Both will require anesthesia. They also have to repeat the nose hair biopsy since the results were not what they were hoping for.

The good news is that she does not have Cystic Fibrosis. Her sweat test came back negative.

Please keep her in your prayers and we will keep you updated.
   


Sunday, September 28, 2014

Home Again

Sorry for not updating everyone sooner. We came home from the hospital Tuesday night, just in time for the Rosh Hashana holiday on Wednesday evening. Wednesday was spent doing last minute cooking and getting used to Avigayil's new feeding pump at home. The company that gave us the pump told me that they were sending the disposable parts by courier but that the service was not working on Wednesday (the whole country shut down from Wednesday thru Saturday this week for Rosh Hashana). We would not get them until Sunday. The hospital gave us what we needed so that we would have in the meantime. Then, on Wednesday morning there was a knock at the door. The delivery man was there with our (very large) box.

I thanked him and said "I thought you don't work today". "We don't" he said. "But the company told us it was for a sick baby and we wanted to make sure you had what you needed before the holiday." I was blown away. This is the kind of kindness that characterizes life in Israel.

Thursday and Friday went well, but on Shabbos (Saturday) morning, we ended up in an ambulance racing back to the hospital. Why? Avigayil got a cold.

I. Kid. You. Not.

When preemies with lung problems get sick, they really get sick. She was vomiting (for an hour straight!), had a fever and her O2 sats where going down to 70. So, we called an ambulance and went back to our favorite place on earth.

Our neighborhood has an amazing organization called Hachovesh Har Nof. It is an ambulance staffed by volunteers who live in the neighborhood. When a call comes in, whoever is close drops whatever they are doing and runs to help. Within a minute of my calling for help the first EMT showed up at our door. Soon there were several more men running in breathless to see if they could help. The call had gone out, Baby with trouble breathing, saturations down to 70 (which really is very low). I was touched by the many people who dropped everything to come to our aide.

She and I where quickly loaded into the ambulance and taken away. Later in the day, one of the crew members even came by (after another hospital run) to see how she was doing. This is not the first time we have had to call them. In all, Hachovesh has rescued us 4 times. Twice for Avigayil, once when Shimmy broke his arm and once when Chavi split her head open in the middle of our historic blizzard this past winter. Every time they have been quick, professional, and extremely helpful. Everything is always done with extreame care and sensitiveity. I could never thank them enough.

We are home now and hope to stay that way for a while. Avigayil has an appointment for the pediatric day hospital on Wednesday. We still have some medications and equipment to pick up. Hopefully though, we can find time to just hang out in our PJ's and not go anywhere for a while. I think we have earned it.

Monday, September 22, 2014

Update

Avigayil decided that if she was going to be in the hospital she might as well make it worth it. She has viral pneumonia, a uti and an ear infection. She was put on a feeding tube and a slow feeding pump. She is finally gaining weight though. She is on antibiotics and starting to feel better. She is still having strong stomach pains but the GI is working on it.

If her fever does not come back and if her feeding pump works well and if her pulmonologist gives the OK we might be able to go home tomorrow. Just in time for the holiday. We are really hoping everything works out.

Thursday, September 18, 2014

The Big Bad Wolf

So it has finally come. The big bad wolf of preemie life,  rehospitalization. We went to the Dr today and Avigayil wasn't breathing well and was breathing fast. Her lungs sounded bad and to top it all off she had actually lost weight.  The pediatrician called the pulminologist and off we went to the hospital. By the time we got to the ER she had a fever as well.

As soon as we got to our room they put in a feeding tube. With in 5 minutes Avigayil had pulled it out completely (while sedated no less!).  It takes a lot to impress a picu nurse. They said Avigayil was a prodigy. I guess every parent needs something to brag about. Can she push up while on her tummy? No, but she can remove any medical device in under five minutes flat.

Yisroel Meir is taking the news hard. He called me when he got home and was hysterical.  The other kids are disappointed but handling it well. We hope to be home before the upcoming holiday next week.

Please continue to daven for Avigayil bas Rivka Batya.

Monday, September 15, 2014

Another Deadline

This time it's Thursday. Avigayil has not been gaining weight and has been eating only 1/3-1/2 of her minimum nutritional requirements. They are starting her on a medication she had been weened off of in hopes that it will help her to eat again. She now has until Thursday to start eating and gaining weight. If she does not she may need to have her feeding tube put back in. While our pediatrician said he would do his best to see if he could get it done as an outpatient, chances are that the big bad wolf of rehospitalization would rear it's ugly head.

In the meantime, we will be praying and feeding and our pediatrician will be talking to the pulminologist to see what the best way to handle everything is. Please keep her in your thoughts and prayers over the next few days. So far, we have beat the last few deadlines, with G-d's help, we will beat this one too.

Sunday, September 14, 2014

Challenges


Many people see life as a series of problems and irritations. As Jews, we see the world as being full of challenges and tests. We believe that Hashem sends us challenges in order for us to grow. Every challenge in life, big or small, is an opportunity to work on yourself, to work on some trait that needs improving. However, some challenges are so large that you have no choice but to change who you are. 
Being a preemie mom often means going on when you no longer have the strength, fighting when you no longer have any fight left and getting up to greet each day with a smile, a tear and a prayer. Although I see myself as a whole person and as more than the mother of a preemie, being a preemie mom has changed the way I see the world.

No pregnancy or parenting book could ever have prepared me for the challenges we have faced and still do every day. Although many books dedicate a chapter to the premature baby and some books are written especially for preemies, there is no way a person can truly understand what they are in for until you are standing in the NICU, outside a plastic box where your child lies on life support. There are no words to express the thoughts that go through your mind when you hear the words "chances of survival." Nothing can describe the sheer terror that winter holds until you are rushed to the hospital twice in one month for "only" a virus, knowing that that a "simple" cold could kill your child. 

Avigayil still has such a long road ahead of her, its easy to despair. However, another thing that being a preemie mom has taught me, is that Hashem makes incredible miracles.  He has held us through all of this and it is His will that this change us in this way.  May we always take from every challenge the lessons He wants us to learn and become the people He wants us to be.



Friday, September 12, 2014

How Old Is Your Baby?

For most people this is a relatively simple question.  For preemie parents, like almost everything,  it's anything but. You see, my daughter actually has two ages.  There is her actual or chronological age and her corrected age.

Chronological age is just what it sounds like. This is how old the baby is counting from when she was born. Corrected age is how old she would be if she had been born on her due date. This means that Avigayil is currently both 5 months old and 3 months old.

There are a few things measured by chronological age, such as immunization,  but most things are done by her corrected age, such as developmental milestones.  This means that if a baby will usually achieve a certain thing by 6 months,  Avigayil should do it at 8 months chronologically.

This is just another one of the things in life that are different now. 

Sunday, September 7, 2014

Good News

While Avigayil's breathing is still spotty and troubled lately and her weight gain is still slow, we have some good news. Today she weighed in at 4 kilos even!! We are so happy we could spit (well Avigayil spit, I just said hooray).  So at 5 1/2 months, my baby girl is in newborn clothes and is now the size of an average new born baby. Yeah!

Friday, August 29, 2014

Update

Wednesday, Avigayil was admitted to the pediatric day hospital at Shaarie Zedek. There she saw a pediatric gastroenterologist,  a pediatric dietician (yep, a dietitian for babies), her pulminologist,  as well as have a series of tests. The day hospital allows her to get all of this as if she was in the hospital but to still go home at the end of the day.

Aside from looking into her health we also learned that Avigayil likes clowns and balloons. She was given her own Mylar balloon and even a tambourine.  I got soup and cake. (I guess the cake was to make up for the tambourine.)

They are making some changes in Avigayil's diet and her meds. Hopefully that will help her breathing and help her to start to gain some weight.

What is really worrisome however, is the level of CO2 in her blood. It is much higher than the doctors are comfortable with. To combat this they have decided to give her another short course of steroids and on Sunday, unless they see a major improvement in her breathing, she will have to go back to the hospital and repeat the blood test. If they do not see a major improvement in her CO2 level then they will admit her to the hospital to try to find out why. We are very worried and are davening hard for her. Please keep her in your thoughts and prayers.

Wednesday, August 20, 2014

Rocket Fire

Yes, there was more rocket fire at Jerusalem just now around midnight. We are all ok. The kids are a bit shaken up, mostly at having been ripped from bed in the middle of the night. Avigayil and I didn't make it to the bomb shelter and took refuge in the stair well. Chavi was very upset that we didn't come down. They are saying over 50 rockets since this afternoon. Here is hoping the rest of the night is quite.

Tuesday, August 19, 2014

Avigayil's First Ambulance Ride and Lots of Joy

On Friday night Avigayil looked a bit off. On shabbos day (Saturday) she started to get sicker and sicker. Her breathing was labored, she had "virus diapers" and over all was not doing well. Her saturations kept dropping into the 70's. She even stopped eating. Then came the green vomit.

Green vomit can be a sign of bowl obstruction, a very serious condition requiring immediate emergency attention. So we called an ambulance. Within minutes they came to the house and a few minutes after that Avigayil and I where in the ambulance and off to the hospital. Joy.

When we got there the doctor took one look and said "She is going to have to stay." "Oh, no!" I thought. "This is the first rehospitalization that I have been so dreading."

Thankfully, she did not have a bowl obstruction, and over a few hours they where able to stabilize her breathing. We stayed over night and went home on Sunday, with yet another medication added to her list.

I guess the rehospitalization nightmare will have to wait.

To make Sunday even more enjoyable the older kids went to the park in the afternoon. After about half an hour they came back in screaming like hyenas. Apparently, they where viciously attacked by bees at the park. Each one had multiple stings on their heads and arms.  So I called the pediatrician for the second time that day. We are becoming good friends. If this keeps up Dov might get jealous.

To top it all off that night Avigayil's nebulizer quit. I guess 4 -6 times a day is too much for a drug store nebulizer. Joy again.

Then on Monday we had to go back to the hospital for a hearing test. (You'd think we liked it there) Preemies in general but especially preemies who had antibiotics shortly after birth or where on oxygen (we hit all three) are at a greater risk for hearing loss then the general public. Therefore we will be following a strict schedule for hearing tests over the next three years. The tests is different from most hearing tests in that it measures how her brain is processing the sounds.

When I made the appointment they told me "You should come with the baby being tired but not asleep. Then once we start the test she should go to sleep. If she doesn't sleep then we can't do the test." Riiiiiiiiiiiiiiight. How exactly am I supposed to pull that off?

So I more or less tourtured my already sick baby by keeping her up and then we get to the test and they start cleaning the skin on her head and face with all kinds of stuff and sticking on the electrodes. Did I mention that Avigayil has REALLY sensitive skin and almost anything can irritate it, especially cleaning solutions, alcohol and anything sticky? If that where not enough they then stuck things into her ears.

Ok, now go to sleep.......lots of over tired screaming.......she finally surrenders and goes to sleep.

Now we start the test. Every time she fusses they stop and wait for me to calm her and for her to go back to sleep before continuing. After about an hour I ask if we are almost done. They tell me "about half way." WHAT!!! This is a TWO HOUR TEST?! And my baby is supposed to calmly sleep through it? Who thought of that brilliant idea?

Well we got about 2/3 of the way through before she just couldn't sleep any more, but it was enough to know that she does not currently have any hearing loss. Now we are privileged to do the whole thing over in 4 months. More Joy.

Thursday, August 7, 2014

Failure to Thrive

These words are scary for any parent, but for a preemie parent they are terrifying. Avigayil has been through so much. She has fought for every day of her life . She is a tiny baby with a diagnosis bigger than she is, in more ways than one. Today, the doctors added one more - failure to thrive.  

I am heartbroken. Although, diagnostically what this means is that she is not gaining weight (and that is a big enough problem), the diagnosis brings on so many more connotations after everything we have been through. We have worked so hard to get to this point, we have begged her to live and breathe and prayed for her to do well. What parent does not want their child to thrive? While we are very concerned about her weight gain, these words also deal a psychological blow to the preemie parent that is hard to explain.

In terms of the medical condition, Avigayil is gaining weight at only 1/4 the rate she should be. Even though she is eating just as much as a regular baby, she is expending too many calories on breathing (she breathes 2-3 times faster and works harder to breathe than a normal baby). Avigayil's problem, is that due to her digestion issues and allergies there are not too many options available to her. We are going to see a pediatric dietician today to see if they can find an additive that she will not be allergic to and that she will be able to digest.

If she does not start picking up weight soon she may need to have her NG tube put back in and go on a feeding pump. We are trying hard to avoid re-hospitalization. In the meantime, it is back to pumping exclusively and feeding her through bottles so that she will burn fewer calories eating.

Please keep her in your thoughts and prayers. 

Tuesday, July 29, 2014

So Many Firsts

Avigayil has been home now for two weeks. It has been an interesting time. We are getting to know each other and looking for our new normal. She is a generally quite and easy going baby. She loves movement and loves to go outside. She loves all her siblings but seems to especially like spending time with Shimmy, our 7 (and 1/2!) year old.

Sometimes people think that coming home means its over, that everything is ok. This is far from the truth. Although Avigayil is getting stronger she is still having difficulties. She is still on oxygen and is currently not gaining any weight. That means that I am still pumping and we have to wake her ever three hours to feed her, something no parent in their right mind normally does.  We are currently going to the well baby clinic once a week for weight and a check up. This will continue for 8 weeks and then we will have a two week break before she has to start going every few weeks for an RSV shot (more on this closer to the winter). We are davening that she starts to gain weight soon before more drastic measure as required.

Someone sent me something that said "Being a preemie mom means doing things other people don't understand". Looking back on the last two weeks I see how really true that is. Our list of first is quite different than other people's. We had our first pediatrician visit, first visit to the pulminologist, neonatologist, physical therapist, preemie clinic, well baby clinic, pediatric day hospital, GI, and our first trip to the ER (I'll tell that story soon I hope). We had our first sleepless night because her monitor kept going off and our first oxygen concentrator mishap. In a few weeks she will have her first cardiologist visit as well. I also can't tell you how many conversations I've ended with "gotta go the baby is turning blue." (By the way, that is the fastest way EVER to get rid of a telemarketer.)
 

Going out with Avigayil is also different. My diaper bag includes nasal canulas, medical tape, granuflex, SpO2 sensors, sensor sleeves, syringes, medicines, suction, charging cord for her monitor, a medical file, emergency contact info fr the oxygen company, and oh yeah, diapers. We had to get a new stroller that would hold her oxygen tank and monitor (I love it, thank you grandpa). Outings are determined by how many people will be at any given place and how much oxygen we have left.

On the plus side we are now on a first name basis with all the local and regional pharmacies and we get special treatment at the well baby clinic and at our insurance office and nursing clinic. Additionally, "I'm running low on oxygen" helps get me to the front of almost every line (we have many bureaucratic offices to visit in the coming month I hope it works there as well). 

In short, life has been extremely busy and crazy, but we are hoping to settle in some time soon. Things are starting to get more routine, even all the doctors visits. IY"H (Please G-d) she should start to grow and gain weight and should continue to get stronger and healthier.


Sunday, July 13, 2014

She Came Home!!

That's right, after 101 days in the NICU our baby girl finally came home.I can not describe the immense joy and relief. I smiled so big I thought my face would break and I cried so much I thought I would dehydrate. One would think we had reached the end, but really its just a transition. Avigayils story still has a many more chapters to go before we can celebrate her full return to health. Leaving the NICU however, is a major step.

She came home on Friday before Shabbos, and thankfully only on oxygen. This means that she can actually leave the house for short periods of time. Today, she got to go to the health insurance clinic and the well baby clinic. Later this week to the pediatrician, then next week back to the hospital to see the pulminologist. After that to the preemie clinic and to get a special hearing test at the audiologist. Our baby is only 103 days old and she already has so many specialists you would think she was 103 years old. In the coming days and weeks we have to visit all of them.

In between all this, we are learning the quickest way to switch her to portable O2 (she is usually on an oxygen concentrator) and shlep her and her O2 canister and her monitor down to the bomb shelter when the air raid siren goes off while simultaneously herding my other 4 children in the same direction. Life is just getting more and more interesting for so many reasons. 

Here are some pictures of her leaving the hospital. I hope to post more of her homecoming and first outing soon.









Thursday, July 10, 2014

100 Days And A Miracle

Today marks a milestone we never wanted to reach. 100 days in the NICU. As I look back there have been a lot of ups and downs. A lot of tears and happy moments. 

The last few days have been crazy.  Yesterday,  the people in charge of the home hospitalization came. After all was said and done, they said we would leave today. We scrambled to get everything done.  Equipment,  meds, diapers.  Then late in the afternoon I got a phone call.  There was  a bureaucratic problem.  After what felt like a million phone calls,  thing where mostly worked out.

When we came this morning,  one of the thing left to work out was the ambulance home. The insurance company would not pay for an ambulance,  none of the transport companies would take her and the hospital and the insurance were fighting it out. That is when one of the doctors realized that we hadn't tested to see if Avigayil would be OK on just oxygen for the time it would take to get her home. Everything hinged on this test. If she failed everything was mut since if she couldn't manage to get home then she couldn't leave the hospital.  So we turned off the machine and held our breath.

She did well. She did very well.  In fact,  she did so well that the doctors decided to keep her in the hospital one more night and see if she can manage on only the oxygen. So far she has been off the machine all day and has had very good saturation levels. IY"H (Please God) she will go home tomorrow on only oxygen!  She will not need the home hospitalization that we worked so hard for. The doctors are baffled,  it is literally a miracle.

Two days ago,  the prongs came out of her nose and she started to crash. Yesterday her x-ray showed her lungs looked the same. Today she went from being on a flow of 5 lpm to nothing,  just like that.

IY"H Our baby girl will come home for Shabbos tomorrow and for the first time in almost six months, our whole family will be together.

                                                                             

Tuesday, July 8, 2014

We Got It!!!!!!!

Baruch Hashem (Praise G-d) we got approved today for home hospitalization!! I was so happy and excited that I couldn't sit down for two hours after they told me. The range of emotions right now are so great it is hard to describe. I'm happy, relived, excited, scared, worried, overwhelmed.

The next few days will be a whirlwind of getting ready, getting equipment, training. Life from now on will be interesting. Some people think this move will make life easier for us. It is true that I will not be spending so much time running back and forth to the hospital. However, Avigayil will not be able to leave the house. In fact, she will not be able to leave our bedroom. Her breathing machine will need to be connected to electricity all the time. Either Dov or I will have to be home with her at all times. We cannot go out together. I will not be able to run to the store or a doctors appointment or errand in the mornings like I usually do. We will have to turn our home into a mini hospital and become the crazy germ people the I have always despised.

We are excited, crazed, and just very, very happy. 

Sunday, July 6, 2014

The Long, Lonely Walk

As I walked to the hospital on shabbos this week I reflected on my walk last week. There was a spring in my step, a happiness to it. I felt sure that it was the last time I would be making that walk. I was certain that the following week we would be lighting the shabbos candles with our little girl safely tucked away in our home.

It was not to be.

As I made the walk this week it felt a little longer, a little more lonely. I wanted to see my baby, to hold her. I also knew that if I didn't go she would not have enough to eat. However, a part of me didn't want to go, or more accurately, didn't want to have to go.

We have come a long way. Sometimes its hard to see that. A good friend, who happens to be a neonatologist, pointed out the other day that we are no longer talking about chances of survival.  Baruch Hashem (Praise G-d). While this is so frustrating for us and some days are so hard. It sometimes helps to know that we are at least past the question of "Will she live? Will she make it?"

Her nurse the other night was one of the nurses who was on duty when she was born. She told me what they hadn't told me until now. Apparently, the beginning was a lot more touch and go then I had thought. She really had a very rough start. It made me look at our daughter, our tiny baby girl with a new respect. She is a true fighter. I hope that spirit will help with the challenges ahead.

We got a lot of new information this week. Some of it was encouraging and some a little hard to swallow. Her pulminologist said that at this point, he expects her to need the machine for at least a couple possibly several more months before she can be moved to just oxygen. Her BPD is severe and could affect her life greatly until she is 5 and may affect her in some ways until she is 16-18 years old. She is also having trouble eating. Her vomiting has increased a lot and she is not gaining any weight. The doctors restarted her on the antibiotics to try to help her digest her food. She is being given a new additive to try to help with her weight. Unfortunately, she is simply very uncomfortable and has been crying a lot.

I wish there was more I could do to help her. I wish there was a way I could take her in my arms and make everything better. Until then, I will continue the long, lonely walk of the NICU mother.   


Tuesday, July 1, 2014

Denied

We are back to square one.  After a week of running around and thinking we where bringing Avigayil home,  the insurance notified us today that they will not pay for the machine she needs to come home.  I'm heartbroken. Everyone was so sure that this was going to work.  Even the NICU staff was taken by surprise. I was ready to move on, to move beyond the hospital.  My entire life has revolved around this place for the last 6 months.  It was bittersweet thinking about leaving,  but I was ready. Now we are back to the endless tunnel that is the NICU.

I'm not sure though who is more upset,  me or the doctor.  Dr. Y, who has been working hard to get this set up,  had many words to express how he felt. None of them are repeatable. The hospital is appealing on our behalf. We are hoping with all our might that they can still push it through, that we will still be able to bring Avigayil home. Otherwise, we are in for a very long haul.

In the meantime,  Avigayil is having a rough day.  She is vomiting a lot, having difficulty breathing and is very uncomfortable. Please keep her in your prayers.

Friday, June 27, 2014

Shiur For Avigayil

Rebbitzen Heller will be giving a shiur in Avigayils schuz for a refuah shleima. It will be at our house (HaAdmor MiRuzin 9 apt 11, Har Nof, Jerusalem) on Monday at 5pm. Free babysitting will be provided. The topic is Emuna in Difficult Times.

We're Number One

Yesterday,  the paperwork was started to send Avigayil home. This is going to be a tough journey. Unfortunately,  home hospitalization will not mean that the store is behind us. It will just be a new chapter.  She will not be able to leave the house,  we will not even be able to take her from room to room.

We have already hit our first bureaucratic problem (a disagreement about who pays for her new, and wildly expensive machine), our first insurance problem (the ambulance ride home is not covered), and our first technical problem (how are we going to fit all this stuff in our room). We are working on solutions to all of them.

Meanwhile, all eyes are on us. Avigayil is the first preemie to be on this machine. We are the first from the NICU to be going on home hospitalization. If all works out well for us, there are already at least 3 other families on the waiting list to get similar treatment. In theory, this could be a great advancement for Neonatal medicine and for the parents of preemies. This can and most probably will mean that we will hit many problems since no one is really sure yet exactly how this will work. Hopefully, it will also mean that we will get lots of support since everyone is very motivated to make this work. 


Wednesday, June 25, 2014

The Road Home

We got an amazing surprise today - a home use vapotherm machine. What does that mean? If the next 24 hours go well on the machine, they will start setting us up for home hospitalization. Avigayil will still be hospitalized, but it will be at home. All the equipment she will need will be brought to us and our bedroom will be turned into a mini NICU. She will not be able to leave the house (or even the room since her machine needs to be plugged in to work). Doctors, nurses and therapists will all still see her, but at our house.

While we had discussed the theory of this machine with the doctors, we had no idea that this was coming today. In fact, even the doctors said they were not sure it was going to happen until it did. The machines where just approved and Avigayil is the first baby from the hospital to get one. Every doctor in the NICU came to see it. The nurses all came in to get trained on it. The technician made sure I understood everything. The pulminologist spent plenty of time going over everything with me from what was happening now to what the next few months and years will look like. He feels that it would be best to ween her off the flow slowly over a few months. She would usually need to be in the hospital for all that time. This new machine and home hospitalization would allow her to be home during this time.  

Home Hospitalization is a relatively new concept. It is only for stable patients needing extended care. Studies have shown that patients in home hospitalization programs do better and recover faster than those kept in the traditional hospital setting. It has been shown to also drastically reduce stress. While it will not be the same home coming that most people have, and it will not mean that her ordeal is over, it would mean that Avigayil would be home. For the first time we would be a complete family.

We are really hoping that the next 24 hours go well.

Tuesday, June 24, 2014

Avigayil is doing a bit better.  She is getting her inhalations every 12 hours and they seem to be helping.  I can't believe how tiny the mask is.



Two more babies went home this week.  We are now one of the families with the most seniority.  It is always bittersweet to say goodbye to another family.  We are so happy to see them go home, but long to be saying our own goodbyes.  We celebrate the beginning of their new life,  but mourn the loss of our friends.  Like soliders in a battlefield,  we forge instant and intense relationships.  However,  like soliders after a war, people sometimes don't keep in touch,  because the memories are too painful,  the trauma too fresh.

With G-d's help, we should all go home soon with healthy babies. 

Wednesday, June 18, 2014

Setback

Avigayil is not doing so well today. She is having a lot of trouble breathing and cannot eat because of it. They are trying to give her diuretics and starting her on broncodilators to try to help her breathe better. Please keep her in your thoughts and prayers.

Thursday, June 12, 2014

Intermediate Care

Good news!! Avigayil was moved out of intensive care. She is now in the intermediate or step down unit. This is a level in between regular hospitalization and intensive care. We spent the last 71 days in intensive care.  She still has a long way to go before discharge,  but today's move was the reward of 10 weeks of prayers and tears. May Hashem (G-d ) continue to bless Avigayil and move her towards a refuah shleima, a complete healing. Please continue to daven for Avigayil bas Rivka Batya.

Wednesday, June 11, 2014

Forward Movement

Avigayil is getting stronger every day. She is now back to taking all her meals by mouth and yesterday she even nursed a full meal.  If we can just get her to start gaining weight again and get her o2 requirements lower, we could be on our a way.  It doesn't sound like much,  but it is still a huge challenge.

In order to improve her breathing her fluid intake was limited and several additives were put in the milk to increase her caloric intake. However,  they had to drop the additives when she started to vomit every meal. They have been slowly increasing the amount of milk she gets trying to find the right balance so that she will gain weight but not effect her breathing.

Today was also harp day. Avigayil lay happily sleeping in her bassinet listening to the music she has come to love.


We are not the only ones anticipating Avigayil's homecoming.  Even Chavi, our three year old has started drawing pictures for her baby and asking when Avigayil will come to live with us. She frequently tells me that Avigayil is her friend and often lists her with her other siblings. I didn't think she really understood,  but now we I do. I guess I should learn from this not to underestimate my children. They understand and feel a lot more than we think they do. 

Sunday, June 8, 2014

Big Steps and Baby Steps

Avigayil is finally,  b"h (thank G-d) making some progress.  Her oxygen is down to 40% and the flow is at 5 lpm. I am now completely off all dairy and all the additives have been dropped from Avigayil's milk. She is taking an antibiotic to help create better abdominal contractions.   This seems to have helped as she no longer vomits 7 times a day.  She is holding her weight around 2.8 kilos.

The biggest news is that she is taking most of her meals by mouth again and even nursed one time. She had half a meal from nursing which is a big accomplishment since she was able to suck, swallow and breathe all while staying latched for more than a second at a time. She has never been able to do this before.

Overall we are happy with this progress and are praying for it to continue.

Monday, June 2, 2014

Life and Death, Hugs and Tears

The NICU is a place of exteams. The babies here are the smallest, they are the sickest. Emotions run high and parents will experience the happiest and the saddest times of their lives here.  This creates an intense closeness amoung the parents, nurses and doctors that is almost unrivaled. We share hugs and tears of joy when we have a major advancement.  Our hearts ache for each other when there is a set back.  When a life is lost, we cry as if for our own.

Everything here revolves around life and death. Everyone fights for life, but sometimes those battles are lost. Neonatology is a relatively new area of medicine. Babies born more than 6 weeks early used to have little to no chance of survival.  Today doctors are able to save babies born as early as 23 weeks. Most of these advances have been made in the last several years. This has lead to all kinds of new challenges.

BPD is a modern disease.  Babies are being kept alive longer and are able to get more breathing support than before.  If not for that miracle then the scarring and cellular changes in our daughter's lungs would not have taken place. She would not have bpd or any other breathing problems because she would not be breathing.

As we say goodbye to another family to leave the NICU forever alone, I renew my patience and daven (pray) with a new intensity for the refuah shleima (complete healing) of our daughter and all the other babies I have come to love and care for here.

I also offer my immense gratitude and appreciation to the pioneers of this field,  to the researchers and doctors who have dedicated their lives to the smallest amoung us. So many families are whole today because of your work. So many parents have full arms and hearts because of you. There will never be enough words to thank the people whom I will never meet, but in my heart, I will never forget you and all that you have done for the world.

Friday, May 30, 2014

A Bit Better

Avigayil has been doing a bit better recently. Her flow is down to 6.5 and her O2 between 45-55%. She has been coughing (both with the physical therapy and a little on her own). She is now wearing clothes that we brought her from home and she is just adorable.

Her Sabba and Savta (grandpa and grandma) came earlier this week to meet her for the first time. They brought her a little bear for her bed from Savta's friend. It's bright colors and she loves to look at it.

Two of the other babies in her room where discharged yesterday. We are happy for them and eagerly await our turn.

Sunday, May 25, 2014

Bittersweet Day

Today was bittersweet. Avigayil is doing better. Her oxygen concentration is down lower than it's been for almost three weeks and she has been keeping her saturation up longer. We are thrilled to see some progress after so long a time without any progress at all. The physical therapists have tried a new technique and it really seems to help. She also took her first real deep breath today!! I wanted to cry I was so happy.

 In the NICU you are constantly told to be patient. While other mothers are snuggling their babies and showing them off to friends, we are cuddling a plastic box and navigating a jungle of tubes and wires. We want nothing in the word more than to take our babies home. Just when we (myself and a couple other long term NICU mothers) were starting to say that we had run out of patience for being patience, Hashem reminded us how to find more. One of the babies in the NICU died today. He was premature and very sick. They transferred him to Shaarie Zedek in hopes of saving his life since it is the most advanced NICU in the country. The doctors tried and the nurses fought, but Baby Boy lost his battle. There is nothing so sobering as the death of a child. For his parents it is a tragedy beyond imagination, for the doctors and nurses a wounding loss. For the close group of mothers it is a sobering reminder that when we are at the end of our rope and ready to scream, when we feel like we are getting nowhere and life is beating us from every angle, that at least we still have hope. At least we still have our beautiful babies to pray for.

May Hashem send a complete and speedy recovery to our daughter and to all the sons and daughters of the NICU. May He help the parents to find comfort, strength and faith. Refuah Shleima L'kol Cholie Yisroel (A complete healing to all the sick of the children of Israel), Amen!

Thursday, May 22, 2014

50 Days

Today is Avigayil's 50th day of life. 50 days in the NICU. She is still on very high levels of O2 and the flow is still also very high. She is getting daily physical therapy and we are going to try to get it for her in the evening as well.

I have had a lot of time to think about things recently. How hard life has been for sure, but also about the amazing relationships we have built with the NICU staff and parents, about how incredible our community has been, about our wonderful neighbors and about how amazing people in general have been. I've been thinking about the many things that haven't gone wrong also. Today has been a rough day and I am exhausted, but IY"H (with G-d's help) I hope to share an expanded version of these thoughts with you soon. For now I will just write about one aspect.

 The NICU Staff

The staff in the NICU have been amazing. S is the secretary and usually the first person I see every morning. She is great. She always greats me with a smile and is the address to go to when you need anything. She has also helped to get appointments with doctors and to pester the right people when I needed things in a hurry.

 The nurses are also incredible. It's hard to explain what it is like to relinquish the care of your daughter, your tiny, newborn baby to strangers. The nurses understand what we are going through and love Avigayil and take are of her like she was their own. So many times they have told me how they where praying for her or thinking of her in their off time. One of them brought her a picture book to open in her crib so she would have something to look at. They fight for her and are not afraid to get in someone's face if they think it will help her. When I'm tired, afraid or just don't know what to do, they pick up the ball and charge ahead to do battle for her. I can't tell you how amazing they are.

 K is Avigayil's physical therapist. She comes every morning to treat her and usually ends up giving me some emotional therapy as well. She is positive, funny and tons of fun. I look forward to talking to her everyday. It's one of the highlights of my day.

The residents are very nice and helpful. I have become particularly close to two of them. One is R. She is always there to explain things to me and makes me feel like a friend. N is the other one. He is very encouraging and patient. He understands how to heal not just the babies but their parents also. Today when I was feeling particularly low and on the verge of tears he encouraged me to cry and then brought me chocolate. What better medicine is there?

The senior doctors are attentive and helpful. However one particular doctor has really won our hearts. Dr. I was Avigayil's doctor when she was born. She took the time to talk to us every day and even after she moved to the step-down unit (the doctors switch each month) she comes back to the intensive care unit to check on Avigayil frequently and still answers any questions we have about her care.

The head of the unit Professor S is very kind and responsive. He makes time to talk to me when I need it and has always helped me any way he can. His philosophy is that they are treating not just the baby but also the family. He says that they are not two separate entities but parts of the same whole. This attitude is felt throughout the NICU.

Monday, May 19, 2014

Still Tough

Avigayil is still having a very rough time. Her breathing is very labored and she is still on 60-70% O2. She started to vomit all of her meals and can no longer eat by mouth at all. Even after her first feeding by NG tube she still vomited the majority of her meal. She is now being given her feed over 2 hours. The idea is that if it goes straight into her stomach very slowly then her breathing will not effect the feeding in such a way that she will vomit. So far today this has worked. We are understandably frustrated by the lack of progress and the setbacks. The last several days have been very hard. She needs lots of teffilos (prayers) right now and we appreciate everyone's thoughts and good wishes for her. The good news is that she did well with her physical therapy today and we are hoping that if she can keep doing well she will start to make some progress. She spent a half hour with her oxygen saturation over 90% and had 5 spontaneous coughs during the therapy. We hope this can continue.

Friday, May 16, 2014

Rough Day

Avigayil is having a rough day. She is retaining fluid. Her breathing is very labored. Her O2 requirements are up to 60% with the pressure at 7.5 LPM. Over night the CO2 levels in her blood got very high. She keeps having random drops in her saturation that go from the low 90's to around 60 with no warning. Her heart is also having trouble as her heart rates keeps getting very quick. She is also starting to vomit and may not be allowed to continue oral feedings. The doctors have put her on a diuretic and on caffeine. IY"H (With G-d's help) this will help her breathing. Please continue to daven for her.

Tuesday, May 13, 2014

Bronchopulmonary Dysplasia

Avigayil has been diagnosed with bronchopulmonary dysplasia (BPD). This is a chronic lung disease found in premature infants. When a baby is born with breathing problems and requires intubation for extended periods of time followed by oxygen therapy, they often develop BPD. This is because the tissue develops abnormally as a result. "The cell changes in BPD take place in the smaller airways and lung alveoli, making breathing difficult and causing problems with lung function." RDS is also known as arrest of lung development, evolving chronic lung disease, neonatal chronic lung disease, and respiratory insufficiency. So what does this mean practically for Avigayil? For starters, She may be in the NICU for a while. According to the NIH in the US the average NICU stay for babies with BPD is 120 days. When she does come home she will most likely come home with a monitor and on oxygen. She may be on the oxygen for up to a year. It is possible that she will regain full and normal lung function it will not be for a long time. Children with BPD get sick easier and when they do they get sicker. She will be at risk from things like the flu, RSV, and pneumonia. Any of these will send her back to the hospital with breathing problems. She may or may not need specialized therapies for years to come. This is going to dominate our lives, at least the near future.

Friday, May 9, 2014

A Quick Update

Avigayil is now five weeks old. We spent the past 37 days in the NICU. Overall she is doing a bit better. They moved her out of the warming bed and into w bassinet. This means she can now better regulate her body temperature. Last night she had her third blood transfusion which seems to have helped her hemoglobin levels a lot. She is even taking most of her meals by mouth. Her breathing, however, is still problematic. She is using a machine called vapotherm which is similar to cpap. Her oxygen levels are still pretty high at 45 %. Her flow (the pressure required to deliver the oxygen) is also still high. She is still in intensive care. I know this update is short, but I'm still at the hospital and soon it will be shabbos. I will try to post more on Sunday.

Monday, May 5, 2014

Setbacks

I have not posted in a while because things have been a little crazy lately. Avigayil has had some setbacks. Shortly after nursing for the first time she started having some serious problems with her breathing. Her saturation levels kept dropping and she was having a lot of trouble breathing. Her O2 level was up to 60% or more.

This also caused problems with her eating. She was unstable while not eating so it was too dangerous to try to give her feedings by mouth. She was unable to take any feedings by mouth for over 5 days.

To try to relieve some of her breathing trouble they doctors backed off on the amount of milk she was getting.  They added extra calories to the milk to try to prevent weight loss. Even so Avigayil lost over 100 grams.

In addition, because of her under developed lungs, instead of taking in more air when she cries, Avigayil looses oxygen when she cries. I spent a lot of time holding her and keeping her calm to try to prevent her saturation from dropping too low. 

Then on Friday she had a crisis.  While I was holding her her saturation dropped into the low 40's (it should be 100-97%). Fortunately the doctors were in the room. It also happened at shift change and there were extra nurses there to help too. They got her saturation back up with manual ventilation and then switched her to a different type of ventilation.

At this point it was decided to give her a course of steroids. I was basically told that this was a last resort treatment and that it was only given in severe cases. B"H (thank G-d) it has been working.  Her drops are less frequent and less sever and she even took a bottle a few times today. If she is stable enough we may try to nurse again tomorrow.

She is still loosing weight but they are upping the amount of extra calories they add to the milk and hopefully that will help.

It is very frustrating to have setbacks. It is also hard to watch babies who were born after her, but at an earlier week and smaller weight be moved to intermediate care. By far though, the hardest thing for me now is to arrive at the hospital and watch smiling, happy parents taking their new babies home.

Had Avigayil's only problem been prematurity she would have been home by now. However, that is not what Hashem (G-d) wanted her lot to be. She had IUGR and low amniotic fluid This is our nesayon (test) to weather right now. We believe that Hashem does not give tests that a person is not equipped to pass. As hard as it is, we will keep going until we have passed our test.

One source of inspiration to get us through has been the amazing effect Avigayil has had on others. Every comment, every email, every text (although not always answered) is greatly appreciated. People we don't even know have stopped us in the street to ask how she is doing.  People we have never met have cried with us and have shared our triumphs. You can't know how much that has ment to us.

Its not just people who are following her story that she has effected though. She has taken the NICU staff and other parents by storm. Everyone knows our little Avigayil. She is the only baby who repeatedly extubated herself. As a redhead people take notice of her, but once she has their attention she earns their love. Avigayil loves people. Sometimes she cries just to get someone to talk to her. She loves being held and touched. Many of the nurses have told me that they spend extra time holding her because she responds so well. She even cuddles up to them. She has a pleasant manner and actually interacts with people. We look forward to the day when she can interact with the world outside the hospital walls.