Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

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.