Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

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.