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.

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.

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.

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.

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.

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. 

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!