Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Friday, June 27, 2014

Shiur For Avigayil

Rebbitzen Heller will be giving a shiur in Avigayils schuz for a refuah shleima. It will be at our house (HaAdmor MiRuzin 9 apt 11, Har Nof, Jerusalem) on Monday at 5pm. Free babysitting will be provided. The topic is Emuna in Difficult Times.

We're Number One

Yesterday,  the paperwork was started to send Avigayil home. This is going to be a tough journey. Unfortunately,  home hospitalization will not mean that the store is behind us. It will just be a new chapter.  She will not be able to leave the house,  we will not even be able to take her from room to room.

We have already hit our first bureaucratic problem (a disagreement about who pays for her new, and wildly expensive machine), our first insurance problem (the ambulance ride home is not covered), and our first technical problem (how are we going to fit all this stuff in our room). We are working on solutions to all of them.

Meanwhile, all eyes are on us. Avigayil is the first preemie to be on this machine. We are the first from the NICU to be going on home hospitalization. If all works out well for us, there are already at least 3 other families on the waiting list to get similar treatment. In theory, this could be a great advancement for Neonatal medicine and for the parents of preemies. This can and most probably will mean that we will hit many problems since no one is really sure yet exactly how this will work. Hopefully, it will also mean that we will get lots of support since everyone is very motivated to make this work. 


Wednesday, June 25, 2014

The Road Home

We got an amazing surprise today - a home use vapotherm machine. What does that mean? If the next 24 hours go well on the machine, they will start setting us up for home hospitalization. Avigayil will still be hospitalized, but it will be at home. All the equipment she will need will be brought to us and our bedroom will be turned into a mini NICU. She will not be able to leave the house (or even the room since her machine needs to be plugged in to work). Doctors, nurses and therapists will all still see her, but at our house.

While we had discussed the theory of this machine with the doctors, we had no idea that this was coming today. In fact, even the doctors said they were not sure it was going to happen until it did. The machines where just approved and Avigayil is the first baby from the hospital to get one. Every doctor in the NICU came to see it. The nurses all came in to get trained on it. The technician made sure I understood everything. The pulminologist spent plenty of time going over everything with me from what was happening now to what the next few months and years will look like. He feels that it would be best to ween her off the flow slowly over a few months. She would usually need to be in the hospital for all that time. This new machine and home hospitalization would allow her to be home during this time.  

Home Hospitalization is a relatively new concept. It is only for stable patients needing extended care. Studies have shown that patients in home hospitalization programs do better and recover faster than those kept in the traditional hospital setting. It has been shown to also drastically reduce stress. While it will not be the same home coming that most people have, and it will not mean that her ordeal is over, it would mean that Avigayil would be home. For the first time we would be a complete family.

We are really hoping that the next 24 hours go well.

Tuesday, June 24, 2014

Avigayil is doing a bit better.  She is getting her inhalations every 12 hours and they seem to be helping.  I can't believe how tiny the mask is.



Two more babies went home this week.  We are now one of the families with the most seniority.  It is always bittersweet to say goodbye to another family.  We are so happy to see them go home, but long to be saying our own goodbyes.  We celebrate the beginning of their new life,  but mourn the loss of our friends.  Like soliders in a battlefield,  we forge instant and intense relationships.  However,  like soliders after a war, people sometimes don't keep in touch,  because the memories are too painful,  the trauma too fresh.

With G-d's help, we should all go home soon with healthy babies. 

Wednesday, June 18, 2014

Setback

Avigayil is not doing so well today. She is having a lot of trouble breathing and cannot eat because of it. They are trying to give her diuretics and starting her on broncodilators to try to help her breathe better. Please keep her in your thoughts and prayers.

Thursday, June 12, 2014

Intermediate Care

Good news!! Avigayil was moved out of intensive care. She is now in the intermediate or step down unit. This is a level in between regular hospitalization and intensive care. We spent the last 71 days in intensive care.  She still has a long way to go before discharge,  but today's move was the reward of 10 weeks of prayers and tears. May Hashem (G-d ) continue to bless Avigayil and move her towards a refuah shleima, a complete healing. Please continue to daven for Avigayil bas Rivka Batya.

Wednesday, June 11, 2014

Forward Movement

Avigayil is getting stronger every day. She is now back to taking all her meals by mouth and yesterday she even nursed a full meal.  If we can just get her to start gaining weight again and get her o2 requirements lower, we could be on our a way.  It doesn't sound like much,  but it is still a huge challenge.

In order to improve her breathing her fluid intake was limited and several additives were put in the milk to increase her caloric intake. However,  they had to drop the additives when she started to vomit every meal. They have been slowly increasing the amount of milk she gets trying to find the right balance so that she will gain weight but not effect her breathing.

Today was also harp day. Avigayil lay happily sleeping in her bassinet listening to the music she has come to love.


We are not the only ones anticipating Avigayil's homecoming.  Even Chavi, our three year old has started drawing pictures for her baby and asking when Avigayil will come to live with us. She frequently tells me that Avigayil is her friend and often lists her with her other siblings. I didn't think she really understood,  but now we I do. I guess I should learn from this not to underestimate my children. They understand and feel a lot more than we think they do. 

Sunday, June 8, 2014

Big Steps and Baby Steps

Avigayil is finally,  b"h (thank G-d) making some progress.  Her oxygen is down to 40% and the flow is at 5 lpm. I am now completely off all dairy and all the additives have been dropped from Avigayil's milk. She is taking an antibiotic to help create better abdominal contractions.   This seems to have helped as she no longer vomits 7 times a day.  She is holding her weight around 2.8 kilos.

The biggest news is that she is taking most of her meals by mouth again and even nursed one time. She had half a meal from nursing which is a big accomplishment since she was able to suck, swallow and breathe all while staying latched for more than a second at a time. She has never been able to do this before.

Overall we are happy with this progress and are praying for it to continue.

Monday, June 2, 2014

Life and Death, Hugs and Tears

The NICU is a place of exteams. The babies here are the smallest, they are the sickest. Emotions run high and parents will experience the happiest and the saddest times of their lives here.  This creates an intense closeness amoung the parents, nurses and doctors that is almost unrivaled. We share hugs and tears of joy when we have a major advancement.  Our hearts ache for each other when there is a set back.  When a life is lost, we cry as if for our own.

Everything here revolves around life and death. Everyone fights for life, but sometimes those battles are lost. Neonatology is a relatively new area of medicine. Babies born more than 6 weeks early used to have little to no chance of survival.  Today doctors are able to save babies born as early as 23 weeks. Most of these advances have been made in the last several years. This has lead to all kinds of new challenges.

BPD is a modern disease.  Babies are being kept alive longer and are able to get more breathing support than before.  If not for that miracle then the scarring and cellular changes in our daughter's lungs would not have taken place. She would not have bpd or any other breathing problems because she would not be breathing.

As we say goodbye to another family to leave the NICU forever alone, I renew my patience and daven (pray) with a new intensity for the refuah shleima (complete healing) of our daughter and all the other babies I have come to love and care for here.

I also offer my immense gratitude and appreciation to the pioneers of this field,  to the researchers and doctors who have dedicated their lives to the smallest amoung us. So many families are whole today because of your work. So many parents have full arms and hearts because of you. There will never be enough words to thank the people whom I will never meet, but in my heart, I will never forget you and all that you have done for the world.