Heart Beats

About two and a half weeks ago Avigayil's nurse was here. There was a small but highly annoying problem with her monitor and she decided to send it to the lab. In it's place we were given a smaller more portable monitor.

On the first night that we had it, the monitor told us that Avigayil's heart rate was dropping into the 30's. We immediately called the doctor. He said it was most likely a technical issue as it was unlikely that she had such a cardiac change. We then called the nurse back and after a while it showed her heart rate much higher. Over the next two weeks it showed several drops like this however, the saturations it was showing were also not correct. Finally, I called the company and told them we needed to switch back.

When they brought back her old monitor the saturations were believable again but she continued to have episodes where her heart rate dropped dramatically. I called the doctor right away. "Could this actually be happening?" Since this was a good and trusted monitor and we could tell that is was reading correctly he spoke with her cardiologist. She immediately enrolled Avigayil in a program to find out what is going on. Since she had a 24 hour halter only 4 months ago and this would be a dramatic change from that they are worried. I am still holding out for technical error. The doctors' best hope is that all of the difficulty breathing that she has been having lately has put too much stress on her heart and that she has developed a severe sinus arrhythmia. All other alternatives are much worse.

We started last night with a new piece of equipment. It is basically a tiny ECG machine. When Avigayil has an episode we put it on her and it beeps and makes all kinds of noise for about 30 seconds (seriously, it sounds like something is going to blow up). Then we call the monitor company (yet another company for us to deal with) and are connected straight to a cardiologist on call. We then transmit her ECG buy phone. It sounds a lot like the old dial up modems from the 90s.

The doctor is able to give us results right away and let us know if everything is ok or if we should contact the doctor or go to the hospital. A report is also sent to her regular cardiologist at the hospital.

We are hoping for a good outcome but there is a chance of permanent damage. We will not know for a few months. Please continue to keep Avigayil in your teffilos.

PS. Check out SZ's recent facebook post about new equipment for the NICU. Be sure to like and share it. Thank you. See it here

Baruch HaShem, We are going home.  The cautious approach seems to be working.  She spent the night in the er and is on high doses of antibiotics and steroids. She is already improving and will continue treatment at home.

Emergency Room

Avigayil got a high fever today. She was also having trouble breathing. Her pulmonalogist came by and said her lungs didn't sound very good and sent us off to the emergency room. It looks like pneumonia.  The problem is that she is not yet back to her baseline.  If it is pneumonia the hospital will want to treat it aggressively to ensure that she doesn't become critical.  We are in the ER now waiting for results. Please keep her in your prayers.

The Empire State Building Lights Up for Preemies

All over the world last night buildings were light up purple to raise awareness for preemies.

World Prematurity Day

Before Avigayil was born, I knew very little about prematurity. The truth of the matter is that 50 years ago, Avigayil would not have survived, 5 years ago she would have been confined to a care facility. It is because the parents of preemies before me worked so hard to raise awareness and funds for research that my daughter is not only alive but at home with us. Please take a moment today to think about and to daven for Avigayil and for all babies born too soon. Today is World Prematurity Day. 

Prematurity - The Basic Facts

Defined as birth before 37 weeks, prematurity is more common than most people think. In Israel, 8% of babies are born premature. In the US the number is higher at 12%, one of the highest in the western world.

The age of viability is generally considered to be 22-23 weeks gestational age. Before this a baby cannot survive outside of the womb. There are varying degrees of prematurity that can (usually) predict the course of a child's NICU stay and the complication the child could face. (Avigayil was an exception to these guidelines.)

Babies born before 28 weeks are called extremely premature or micro preemies.
Babies born between 28 - 32 weeks are considered very premature.
Babies born between 32-34 weeks are moderately premature
Babies born at 34-37 weeks are considered late preterm.


Prematurity and its complications is the #1 cause of death in infants world wide. According to WHO more the 1.1 million children die every year due to prematurity. Sadly more then 75% of those deaths could have been prevented.

For more information please check out WHO's wesite as well as March of Dimes.
.

November

November is Prematurity Awareness month. In the United States 12% or 1 in 9 babies are born premature. In Israel the number is lower at 9% of births. World wide, premature birth claims 1 life ever 30 seconds. I knew very little about premature birth before Avigayil was born. However, the truth is that prematurity can effect anyone at any time. While there are risk factors that make premature birth more likely, there is no genetic nor any causal link to any predictive factors. Anyone can have a premature baby. Because of this I would like to share some facts and information about premature birth over the coming weeks with you.





I have added 3 new pages. You can check them out on the tabs above. Two pages are things that I have found touching, inspirational, or connected with over the last year and a half. The other page is a round up of some great preemie products.

Homeward Bound

Avigayil has been officially discharged. She has quite a ways to go but the doctors will monitor her from home. (They really want her out of the hospital before she catches anything else and since Avigayil is on home hospitalization the doctors will be coming to the house) Her total weight loss is 700 grams. She is still on a continuous feed of only 30 cc per hour and off oral feeding all together (an overall total of much less then her regular intake). She needs to finish weening off the steroids and is still on an increased number of inhalations.  She will need a lot of follow up, a lot of therapy, and a lot of rest over the coming weeks. The doctors expect her full recovery to take months.

The kids are looking forward to having her home (they said good night to her every night on the phone) and to having me home as well. Avigayil will be very happy to be back in her own crib and is looking forward to not being poked, stuck and examined all day. I am looking forward to a long hot shower and a regular bed. I am sure Dov is really looking forward to getting back to a regular routine .  We are all looking forward to a quiet Shabbos.

Thank you to everyone who has been helping in so many different ways. There have been meal, babysitting, rides, visitors, and many other countless cheseds done for our family.  We are truly thankful for it all.

I am sorry to say that Avigayil will not be allowed any visitors for a while. Unfortunately, she is still weak and can easily get sicker. Also (and here is the really great part), she can easily get RSV again. Yep, our experience of the last two and a half weeks does not exempt her from the virus in the future.  It doesn't even guarantee that she will not get it again this winter.  We were very careful about isolation last winter and will be again this winter, but for the next few weeks until she regains her strength we have to be even stricter. Please don't take it personally if we don't invite you in, we just aren't eager to do this again.

Most of all, thank you to everyone who has been davening. Your support has been priceless and we have drawn strength from it. Avigayil still needs teffilos so please keep her in your prayers and thoughts.

Amazing Progress!!

Avigayil has been making some amazing progress. She was moved back to the pediatric ward and they are working hard to get her home as soon as possible (she has been in the hospital for a week and a half now). Her breathing has really improved and she is close to her baseline. She is back on her breathing machine and slowly increasing her food intake. She is also off a lot of the medication and weening off the steroids.

Unfortunately, she has dropped half a kilo in weight. This will also set her breathing back. She will need to be on her machine 24/7 for a while. We don't know yet if there will be setbacks in her physical development or feeding therapy but it is possible so we are prepared for that.

All in all we are moving in the right direction and much faster than anticipated, baruch HaShem.

Bring It On!

Apparently, Avigayil decided that she has had enough. She waited until I was out eating lunch and then nurse was with a different patient and then pulled out the new feeding tube and her vapotherm cannula. She then threw them both over the side of the crib!

Rather than try to put the tube in place again they are going to try to feed her with her regular feeding tube. We are hoping that she will not aspirate. If so we are back to trying to place a new tube.

Last Night

Avigayil did well last night. The food seems to be helping, she is slowly, slowly improving.  If she continues to improve then in another day or two we will move to a step down unit.

Food For Avigayil

Baruch HaShem, they were finally able to place the nasal gastric jejunum tube (ngj tube). It took 24 hours and several attempts.  Very, very slowly through out the night they will now try to feed Avigayil.  If this works she will use the ngj tube for a few days until she is breathing better and then try to slowly transition back to her regular feeding tube. Our hope is that getting some food into her will help improve her overall condition.  She has had nothing but iv fluids for a week now.

Update

They tried to feed Avigayil again yesterday through her gtube.  Again she aspirated to her lung and had trouble breathing.  She has been off of food for a week now and she is not happy about it. They are trying to place a tube directly into her jejunum (its a part of you intestines , I am not making that up) to get some nutrition into her. The last several attempts did not work.  They will try again today.

Her lungs where collapsed but are now hyperinflated  (the other extreme and just as difficult to breathe). However, this morning she seems to be breathing a bit easier.

Please continue to daven for Avigayil.

Intensive Care

Avigayil showed some improvement Friday night.  However by Shabbos day she started having episodes where she stops breathing. This happened a few times and she started again with minimal or no help. Then she had a very scary incident today. She needed to be resuscitated. The doctors worked on her for 3 full minutes. She has now been admitted to intensive care. Please continue to daven for Avigayil bas Rivka Batya.

Update

Avigayil's situation is getting worse.  Her pco2 is very high. It gives her a pale gray color. She was switched to a stronger machine to help her breathe and they are considering admitting her to intensive care (picu). Please continue to daven for Avigayil bas Rivka Batya.

Hospitalized

Avigayil has been officially admitted to the hospital. It looks like we will be here for a while.  She is very uncomfortable and really struggling to breathe. The virus will definitely set her back and take a while to recover from. She is at the maximum treatment. We are praying that she doesn't get any worse.

Starting of With a Bang

So we are in the ER. It looks like Avigayil has pneumonia and RSV.  RSV is a respiratory virus that is very dangerous for babies with breathing problems. Please keep her in your teffilos. I will try to update when possible.

Welcome to Winter

So, Sunday in Israel was the first day of winter.  We changed our clocks and the weather even decided to get cold and rainy. So Avigayil had to celebrate. By getting sick. Really sick. Hopefully its just a respiratory virus, but she has been having a lot of trouble breathing. We have increased the flow (pressure) on her machine to the highest level it has ever been. She is also on massive amounts of steroids, all in a bid to keep her from her first hospitalization of the season.

In other news, we went to the burn clinic today (up to 6 hospital visits in 11 days) and Avigayil's arm is doing much better. Almost all of her skin has grown back and she will be getting OT for flexibility. The doctors are very pleased.

As I was saying

So we went to the ER tonight. Again. This was our third trip to the hospital this week. Avigayil pulled out her G-tube  (feeding tube). She now has a temporary tube in place and we will talk to the gastro dept tomorrow to see when they can place a regular G-tube. That means trip four and Sunday's appointment at the burn clinic will be a record of 5 hospital trips in 9 days. Go Team Shore!

How to Know You Spend Too Much Time in the Hospital

So the good news is that Avigayil's physical therapy is working! She was able to climb and stood on a therapy step on Friday. The better news is that she did it to reach some soup because she wanted to eat (by mouth!). The bad news is that she pulled the bowl of hot soup down on herself and now has 2nd degree burns. We ended up in an ambulance back to the hospital Friday night.

We saw the plastic surgeon yesterday and they are optimistic. The said that they feel that most of the skin will grown back within a week and then she will go for OT. They also do not think there will be scaring. She is currently in a bit of pain but they don't think there will be any permanent damage.

So, in light of our crazy situation, I present you with ways to tell you spend too much time in the hospital:

You are calmer then the medics in the ambulance.

When you show up at the ER everyone knows your name and welcomes your with hugs.

The receptionist no longer asks for your information or ID numbers, just if she is hear for the same problem as last time.

You get to skip the line straight to triage.

While the nurse types in your baby's current issues, you take all her sats by yourself.

The nurse then says "you can go to your usual bed."

You don't need the nurses to show you where things are, you just get them yourself.

They nurses know your baby's medications and doses by heart.

You no longer need to give the doctors a medical history when you are admitted.

You know every staff member by name from the doctors to the janitors.

The nurses aide knows just how your baby like her bath and what makes her smile.

She has a favorite hospital clown and everyone knows it.

The x-ray tech says "Hey, it looks better than last time!"

You get a staff discount at the coffee stand.

Every respiratory therapist in the hospital has worked on your baby....more than once.

The medical receptionists know your voice on the phone and some of them even recognize your number on the caller ID.

Somehow other parents just know to ask you where the coffee cups are kept and what the code is to the linen closet.

No one gets upset when you silence the monitor alarms of use the suction without permission.

You know the code to get an outside line on the hospital telephones.

You know which elevators to use at what times to get where you want to go fastest and you use all the staff shortcuts as well.

Your diaper bag has the essentials for an overnight stay in it all the time, just in case.

You have the hospital menu memorized and know what to expect every day of the week.

You have the staff schedules memorized and notice when someone takes an unusual day off.

The hospital staff whatsapps about you to each other.

When you run into someone in the hallway they say "I heard you where here."

Staff from other departments come by just to say hello.

The Long Awaited Update

I apologize. I know many of you have been waiting for an update. I have been meaning to post for a while, but it was a crazy summer with the kids home and it simply got away from me. So here it is.

Avigayil has been improving. After a long summer with little progress, she mad a sudden leap. For a few weeks this summer she even went without her breathing machine or oxygen. It was so nice. She was able to crawl around the house (until now she was only able to crawl around one side of the living room because her tubes wouldn't reach.) We took her to the zoo and to the park. She had a great time.

Here she is at the park without anything on her face (her cheeks are still puffy from all the steroids).

It was nice to have a few weeks off completely. However, Avigayil was getting very tired from the effort and her last blood tests showed that her CO2 was too high. She is now back on the machine overnight and for several hours during the day. I try to do it during naps if she sleeps long enough so that she can still move around freely. When we go out she is usually ok, but if she gets too hot or too cold or too tired she has difficulty breathing and requires O2.

In addition, she lost weight this past month. I believe that it is from the increased physical activity and the exertion of breathing without support.

The good news is that she is still spending a good part of the day breathing on her own. She is spending the time exploring the house and getting into everything that she could never reach before. This means that we are going into the winter with a higher baseline then before.

She has already had a few viruses and now she has strep. We are hoping that this winter will be easier then her first one.

She is also moving ahead in her physical therapy. Avigayil crawls and can now pull up to stand. She is having difficulty with walking because of her low muscle tone, but we are working on it.

We are also hoping to soon start feeding and speech therapy. This will help her to learn to eat by mouth.

We are in the middle of the holidays so things are still pretty hectic. I am hoping that when we get back to a regular schedule after sukkos I will be able to post more regularly. Thank you everyone who has been thinking and and praying for her. Our hope is that this year will bring a lot of progress and healing, not just for our daughter but for all premature and medically fragile children.

Shana Tova.

Take a Moment to Breathe

Sha'are Zedek just opened a new children's hospital. It is AMAZING!! (More on this later) Today they are asking for our help to add equipment.

I want you to try something. Hold your breath. Keep holding. Say for 60 seconds. Now let go and feel your lungs fill up again. It's a relief right? Every day you breath over 20,000 times. And you do it without thinking. That is, until you can't do it.

The scariest thing is the world is not death. It's the fear that your child might die in front of you. Every breath is a struggle for Avigayil. Every breath is a gift. For her entire life she has been dependent on a Vapotherm machine. It is her literal life line. She used the hospital's machines and at home she uses a home version of the machine. Without the Vapotherm, Avigayil would not be able to breathe her 20,000 breaths. She is not the only one.

Sha'are Zedek is running a campaign to raise money to buy a new vapotherm. Below is the link and flier for the Campaign. I urge all of you to take a minute to read the information. If you can help, even with just a few shekels (or dollars) please consider it. Please also pass this on to anyone who might help. I can think of few things as worthy of tzadaka as helping a child breath.

http://www.give2gether.com/projects/Shaare-Zedek-Medical-Center-Jerusalem-Breathe/

PS. See if you can spot Avigayil in the video! 

The Story

B"H Avigayil is recovering nicely and in general back to herself. There is a part of the story that I did not share and, in fact, didn't even know part of, until she was discharged. Avigayil was saved from surgery at literally the last possible moment.  

Once the test confirmed that Avigayil's stomach was not where is should have been, the usual thing to do was race into emergency surgery. The problem is that Avigayil is an anesthesia risk. This means that there are real and serious risks in giving her general anesthesia (as the last time showed with her 2 week intensive care stay). In Avigayil's case surgery should be avoided whenever possible. On the way to surgery, the surgeon had an idea. It had never been tried before, but it was worth a shot. 

They took Avigayil to the angio lab. The plan was to use the guided imagery placed a wire through the whole from the PEG and tried to pull her stomach back into place. After several attempts it was still not working. There is a limited amount of time that the PEG can be out. Finally the surgeon called the OR and told them to prep a room for her they where going to try one last time and then head to the OR. Everyone was getting ready. Then, SUCCESS!! Everything slipped into place and they were able to complete the procedure. 

The skill of everyone involved and they willingness to think outside of the box and try something new is what saved her. It saved her from surgery and from all of the likely complications she almost certainly would have had. 

Thank you Doctors. 

Thank you Sha'arie Zedek. 

Thank you Hashem. 

  

We're Coming Home

After much debate, Avigayil was officially discharged this afternoon.  Now I am headed for a long shower and then to bed. I  promise to write the rest of the story when I can see straight.

Fantastic News

Avigayil had quite a day. In the middle of the night her IV infiltrated. That means that instead of the fluids going into her vein they where emptying into her muscles. She woke up screaming with her had and entire arm swollen and hard. They then had to start a new IV which due to her difficult veins took a few tries. 

Later they needed to take blood which meant being pricked again. The test showed that her blood sugar was very low so they decided to repeat it to confirm (pricked yet again). This time it was dangerously low. There where about 10 doctors here as it was in the middle of rounds and they all stayed while one doctor gave her and IV push of sugar. After that they needed to take her blood sugar for a third time to be sure it was enough. (thankfully it was). Then we went down for the Contrast test. 

B"H it looks like we have avoided surgery. The test showed that everything is where it should be again and there is no leaking into the abdominal cavity. Avigayil is now getting her first feeding in four and a half days. We are hoping that she will tolerate it well and that we will be about to go home soon.

The Current Plan

Avigayil made it through the night without further complication. The current plan is to keep her fasting until Thursday and then repeat a contrast test to see how she is healing. IY"H everything will be good and she will be able to avoid surgery. The doctors are fairly optimistic right now that this is what will happen. I guess this is further proof that she is special as her complication happens in less than 1% of cases. Furthermore, It is usually not caught for days. In her case it was caught right away. This improves the chances for a complete and successful recovery. 

What Happened

We went in yesterday for Avigayil's peg to be changed.

When I heard her crying I thought that we made it. If she's crying she is not in a coma. Then they brought her out and we tried to feed her through the new tube. After 2cc she turned red, her eyes rolled back and I realized I was seeing my daughter in more pain then I have ever seen.

Turns out her stomach separated from the outer wall and she had a bit of tearing as well. This caused the balloon on the end of the peg to inflate in the abdominal cavity outside of the stomach. It is a very rare complication. We  have now been admitted to pediatric surgery.

The surgeon was able to replace the peg last night and hopefully the pressure of the balloon (now properly inside the stomach) will help her to heal properly, thus avoiding further surgery.  We will not know for a couple of days.

Pediatric Surgery

Avigayil's procedure didn't go well. Her stomach separated from the outer wall. She has been admitted to the pediatric surgical ward. A lot will depend on how tonight goes. Please continue to daven for Avigayil bas Rivka Batya.

Update and Request

We have had some major improvements recently. Avigayil ate something for the first time!! She had quite a few Gerber Puffs. While she has not repeated the feat, she occasionally eats one so it's still a big step forward. She is back on oxygen all the time again, but we hope that we will be able to get her off it again soon. The biggest improvement is that she has started to crawl. As you can imagine this is very challenging with all of her wires and cords, but we are working on it together. 

Avigayil is going in to replace her feeding tube tomorrow morning. They are being very cautious and are going to try something different to avoid the problems she had last time, however, we would really appreciate teffilos that everything should go well. Please daven for Avigayil bas Rivka Batya.

Update

It has been a while since my last update and I have good news. For the first time in her life, Avigayil is going without oxygen!    It happened a few weeks ago. During the day she was doing so well that the doctor gave us permission to turn off the oxygen and leave her on just the breathing machine. This worked well for a week or so while she was awake. She still needs oxygen when she sleeps or does strenuous activities like physical therapy. Then Avigayil got sick.
Her fever was very high and she needed the oxygen again.  It took a few days to find the source of the infection but thankfully, they found it and got her on an appropriate antibiotic.  She is doing better now and back of the oxygen when awake. We are hopeful that she will continue to improve.

Good News

Avigayil is finally making progress.

We went to day hospital today and, for the first time, have only good news to report. Her blood tests all came back good. Her hemoglobin was good. Her PCO2 was good (even after an extended period on O2 alone). All her blood work came back good.

We met with the Orthopedist who said that he is happy with her and, although he wants to keep an eye on her progress and growth, he sees no reason for concern now. (That's the closest any doctor has come to saying there is nothing wrong with her!)

The gastroenterologist is happy with her progress. He says the peg is working well and healing nicely.

The physical therapist says she is really making a lot of progress. We are working really hard on movement with her and the last week and a half she has made some huge leaps forward (figuratively speaking) in her therapy.

The feeding/speach therapist gave us some new exercises to try with her. While she hasn't made much progress on eating she has started to vocalize more and that is an improvement so she was happy too.

Finally, the pulmonologist said that her x-rays are looking better (the first time I have ever heard that) and that her lungs sounded better too. He wants to start moving towards reducing her meds and weaning her from the home vapotherm. Both with happen over many months but it's a big step forward.

Overall, for the first time we feel like we are making some real progress. Everyone is generally optimistic at this point and we continue to daven that she should only move forward.

Improvement

Avigayil currently has pneumonia however, Baruch Hashem, She is doing better. Her last x-ray showed that her lungs have improved and her blood work was very encouraging. The Gastro was happy with the way the PEG is working and the feeding therapist not only gave us the green light to try to move ahead but is also trying to help us get set up with home therapy for feeding and speech.

We also got permission from the Pulmonologist to take Avigayil on brief outings close to home. Next week we plan to try to take her to the park for half an hour if she is breathing well.

While she has not gained back all the weight she lost she is gaining. She is still not back to herself completely and didn't manage to do any of her physical therapy this week but all in all, things are looking up. We are davening that she should continue to improve.

Thank you

Thank you to everyone who has helped and davened these past two weeks.  While Avigayil is not quite back to herself  (they say it will take some time ) since she is on ishpuz bayit ( home hospitalization ) we are able to be home for pesach and have her doctors finish things here. Although I may not have answered each one, your comments, emails, texts, and messages, we appreciated them all. I hope this chag brings nissim not only to us but to all of you as well.

Home Again

Avigayil is thrilled to be home for her first sedar.

Out of Intensive Care

Last night Avigayil moved out of intensive care.  She is going back on her breathing machine today (instead of the hospital's). She has had the last dose of antiviral and is being weaned off several of the medications.

She still needs blood tests to monitor her kidneys and she is trying to get back to normal amounts of food. She has lost 10% of her body weight. She still has a way to go but has come a long way.

We are hoping to be home in time for sedar.

Slowly, Slowly Down the Road to Recovery

Avigayil's kidneys are holding up and she is getting better slowly. She is interacting with people and although not quite back to herself and is still fairly uncomfortable  she has come a long way.

She has a partially collapsed lung due to the virus and is getting physical therapy 3 times a day. They are planning to give her the 3rd and final dose of antiviral tomorrow. We are hoping that she will move out of intensive care some time by the middle of the week.

Thank you to everyone who has been davening for her. I know your prayers are making a difference. Please continue to daven.

Update

Avigayil's kidneys seem to be tolerating the antiviral for now.  If her kidneys keep doing well she will have another dose on shabbos along with medications to protect her kidneys. Please keep davening for her.

Antiviral

They are about to administer the antiviral. Hopefully this will turn things around. She is in serious condition and really struggling.  There is a significant risk to her kidneys from the medication. The treatment is rarely given  (only in the most serious cases) and required approval from the ministry of health. They then sent the medication to the hospital.

Please keep davening that it works and that it doesn't do damage.

Back to PICU

Avigayil was just readmitted to intensive care. The vius is making her very sick and she is having a lot of trouble breathing.

We now have to decide with the doctors if she should go on the antiviral. There is a real chance of serious side effects but if she doesn't go on it there is a real risk of having to intubate again.

Avigayil Has Opened Her Eyes

Avigayil has opened her eyes and is responding to pain. She is not completely responsive to people yet but she is doing better.

She wad just moved out on intensive care to a isolation step down room.

She also has virus that is making recovery very difficult. Please continue to daven for her.

Extubated

They were able to extubate Avigayil today, B"H. They also stopped all anesthesia this morning, however she has not yet woken up fully. We are hoping that she will do so tomorrow.

Update

After putting in the peg yesterday Avigayil had a bronciospasm. They think that the anesthesia was too much for her to handle.  There is also a theory that her pulmonary hypertension could be back. She is currently in a medically induced coma and intubated.  Today she will see a cardiologist, have an echocardiogram, and under go some other tests. If everything checks out they are hopping to extubate as well.

Avigayil's surgery didn't go well.  Avigayil is in picu, unconscious and intubated. Please daven for Avigayil bas Rivka Batya.

Happy Birthday

Today's date on the Hebrew calendar is the 2nd of Nissan. Today, Avigayil turns 1. As with most things in the world of preemies it is bittersweet. It is a time of mourning and of celebration. 

Today, I mourn the loss of so many things. The last year and a half has been the hardest of our lives. From the very beginning, my pregnancy was extremely difficult. At just a couple weeks pregnant I was very sick. Then came the surgery, the hospitalizations, the bed rest and finally the months in the hospital that lead to our daughter being born early.  

I cry for the loss of the most precious moment right after the baby is born when the parents hear her cry and with joy the doctors bring the baby to her mother. I was robbed of that. Avigayil did not cry and I did not see her after birth because she was not breathing. She was rushed out of the room and into the NICU for her marathon stay. 

I cry for the day that instead of leaving the hospital with my new baby in tow, I left with empty hands and a broken heart. 

I cry for the months she spent in intensive care fighting for her life. For the months that her siblings spent waiting to meet her. For the weeks it took until I could hold my baby for the first time. For the days that it felt like it would never end, never get better. For all the "downs" the NICU brings. 

I cry for the day we first heard the term BPD. 

I cry for the nights that were spent worrying and watching her breathing and heart rate on the monitor. 

I cry for all the ER trips and hospitalizations after we finally got her home. For the day we had to put her on a feeding tube. For the day we realized that the tube would not be as temporary as we thought. For the day we decided to put in a PEG. 

I cry for the day we had to put her back on the vapotherm ventilation.

I cry for all the equipment and supplies that have become routine in our lives, even though this is not what I ever imagined parenting would be about.

I cry for all the milestones we have not reached and all the "regular" baby things we have missed out on. 

However, today is also a day of joy. 

Today I celebrate that our little fighter made it out. I celebrate the day she came off the respirator. The day that I finally got to hold my baby girl after so long only looking at her through a pane of glass. 

I celebrate the day she coughed on her own for the first time and the nurses and I almost cried. 

I celebrate the day she moved from intensive care to intermediate care. And the long awaited day that I finally got to leave the hospital with my baby in my arms. 

I celebrate the milestones we have reached and the knowledge that when we finally get to others, they will be so much sweeter for the battle that had to be fought to get there.  

I celebrate each gram that she has gained, because I know how hard it was for her to do so. 

I celebrate the fact that 20 years ago, a baby like Avigayil wouldn't have made it, but today, she turns 1. 

Today is also a day to be thankful. 

I am thankful to the doctors and nurses who took such good care of me in the high risk unit. 

I am thankful to the doctors who saved my baby's life, not just at her birth, but every day she spent in the NICU. 

To the nurses who held my hand during the day, and kept my heart at night. 

To the resident who took the time not only to care for Avigayil, but also to care for us. To the NICU director who spent time making sure we felt safe and that our baby was well cared for. To the head nurse who did the same.

I am thankful to the physical therapist who taught Avigayil to cough and helped her to breath. She not only continues to advise us on Avigayil's development, but has become a real friend. 

I am thankful to the pediatric department and the staff of the ward and ER for all the times they helped make things right again.

We are eternally thankful to the Pulmonologist who has gone out of his way to take care of Avigayil and push to get her everything she needs. He has worried about her just as much as we have and we couldn't have asked for better. 

We are thankful also for the community of family and friends who have taken care of us over this time. From the people who have brought meals, to those who have helped with the kids. The ones who came up with creative solutions when Avigayil needed her bed at a certain angle of power in a blackout to the ones who provided transportation and companionship. 

There is so much more and so many more people we are thankful to. We are thankful to the many people (some of whom have never met us) who continue to care about and pray for our baby girl.  

Most of all, we are thankful to Hashem. He has been with us every step of the way and will continue to be. He has shown us miracles both big and small and has helped us with love, to grow into the parents we never thought we would be. 

May you never know the road we have walk, but if you do, may Hashem bless you with the same kindness that he has show to us and to our baby girl.

**Tomorrow will be a big day for Avigayil. She will finally have her surgery and we are hoping it will go well. As so many of you have done over the past year, please, please daven for her tomorrow. 

Surgery

We were just notified by the hospital that Avigayil will have her surgery on Monday morning. Please daven for Avigayil bas Rivka Batya.

Monkey Time

Avigayil has a new piece of equipment (just because we didn't already have enough in the house). It is called a monkey stander or prone stander. It is also know as the Avigayil Torture Device. It takes up about as much space as her swing (it's large). The idea is that it will help with many different things including breathing, bone development, urinary and liver function and more. Believe it or not, Avigayil actually LOVE to spend time in it. She likes to stand and watch the goings on around her. She uses it twice a day and can do about 30-45 minutes at a time. We are working to get her up to 1 hour, twice a day.

In other news, Avigayil made it to 6 kilo!!! We are very proud of her.

CT

Baruch Hashem, Everything went well. Avigayil had a little trouble breathing when they put her under but she did pretty well after that. In fact she was the only baby who came out smiling.

We are now waiting for the results which we hope to have in a couple of days. After that we are hoping that they will let us know when they are scheduling the surgery.

Take Two

Avigayil's CT was rescheduled for Wednesday at 2:30. Her Pulminologist came by today to see her and everything is all set. He assured me that they will use as light an anesthesia as possible for as short a time as possible and that he will try to be present for the procedure. We are davening now that there will be no complications and that she will tolerate the anesthesia. Please keep her in your thoughts and prayers on Wednesday.

False Start

Well, we got all prepared. Avigayil fasted all day and at 2:15 we went in to check in at the hospital. That is when we discovered that someone messed up. There was a scheduling error and the doctor and anesthesiologist who where meant to do the procedure where not in the hospital that day. So we are now waiting for a new appointment. They have promised me that we are first in line and hopefully it will be done next week.

Good News!

Avigayil has 2 teeth!! It is so nice to do a normal baby thing. It all the craziness of life these days it's easy to forget the normal things. Even though it has kept us up the last several nights we are thrilled to be doing something normal.


On a separate note, Avigayil has her CT tomorrow. It will be done under general anesthesia (although a lighter general anesthesia then her surgery, there is still a potential risk due to her breathing issues) so please keep her in your thoughts and prayers tomorrow.

Pre-op

We had day hospital today. It was a rough day for Avigayil (every time she turned around someone was taking blood or sticking a tube in her or holding her down for some test), but we got through it. The good news is that she is doing well and aside from her anemia she is ready for surgery. The bad news is they decided to push off the surgery until after they can do a CT. She is scheduled to have the CT on February 16th. It will also be under general anesthesia. If she is tolerating the anesthesia well they may do a broncoscopy at the same time.  After that she will have the surgery, but we don't know yet when that will be.

The hard part now is keeping her healthy until the CT and surgery. We will have to be even more vigilant then we already are. The doctor called it giving her the "plastic bubble treatment". This is not easy with 4 other kids, not to mention 3 grandparents coming within the next week. IY"H (please G-d) we will be able to keep her healthy long enough to get through the next few weeks and everything will be behind us.

Surgery

Avigayil needs to have surgery. She has to have a g-tube put in. A g-tube is a feeding tube placed directly into her stomach. For most children this is a small simple procedure. That will not be the case for Avigayil.

Her GI wanted to do a more complicated surgery at the same time called a fundoplacation. This would in effect stop her from vomiting - forever. Usually this is not done on children who are "neurologically intact" because they grow out of the reflux. The question in Avigayil's case was "Can we wait that long?" Her vomiting is currently on of the things that is keeping her from gaining weight. Since she is not gaining weight, her lungs can't grow and heal. Since her lungs aren't healing more energy is going into breathing and she can't gain weight. You get the idea.

The problem is that the surgery is permanent and irreversible. Also, not all the doctors agree that it will help her.

To further complicate matters, Avigayil is not a candidate for sedation. This means that no matter what we decide It will be a big surgery. She will need general anesthesia and intubation. What is usually a small procedure is now a big deal.

So we did an upper GI study to help us decide what to do. B"H it came back fine and now she will only have the smaller procedure. However, it will not be simple. We are going for tests on Wednesday and if everything checks out hope to do the surgery on Monday.

While she is under anesthesia, if she responds well, they hope to do a few other small procedures as well.

We really don't know what to expect. A lot will depend on how she reacts to the anesthesia. In theory, it could still be outpatient, however they told us that they will reserve her an ICU bed just in case. Once intubated she may have a very hard time coming off the ventilator. Please keep her in your thoughts and prayers.    

In Celebration of Blood Donors

You may not know this but January is Blood Donor Month. Growing up I remember my parents donating blood regularly. I always had an awareness of blood donation but it wasn't until Avigayil was born that the importance really hit home.

Avigayil has a rare blood type that runs in my family. Since I had just had surgery and had bleeding complications I am not eligible to donate blood for a long time. So when she needed several transfusions in the first few months of life it was from anonymous blood donors.

Most people don't think about it. Many people don't even do it. However, when you lie down on that bed and they take blood from your arm, you are saving a life. I will never know whose blood went to our daughter, so to the selfless people who give blood, I say "Thank you." On behalf of every parent who's child has received this precious gift I say thank you. You may get a cookie and juice, but you deserve a medal!

We are currently gearing up for Avigayil's first surgery. She will have a g-tube placed in her stomach and my have a more serious stomach surgery as well (more on this soon). I am still not eligible to give for my daughter and so, yet again, we will be relying on the blood of strangers.

I want to take this opportunity to encourage everyone reading this to PLEASE go out this month and give blood. It is fairly simple and usually takes about 20 minutes (and you get a cookie afterwards!). This is especial true if you have a rare blood type or are O- (the universal donor).  You will never know the impact you have on someone's life with this simple act, but I promise you this. Whoever's life you touch, will be touched in the biggest and most important way possible. You will be a hero. You will save a life.


Please contact MADA, The Red Cross, or your local hospital for more information on how and when you can give blood near you.