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.