Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Friday, May 30, 2014

A Bit Better

Avigayil has been doing a bit better recently. Her flow is down to 6.5 and her O2 between 45-55%. She has been coughing (both with the physical therapy and a little on her own). She is now wearing clothes that we brought her from home and she is just adorable.

Her Sabba and Savta (grandpa and grandma) came earlier this week to meet her for the first time. They brought her a little bear for her bed from Savta's friend. It's bright colors and she loves to look at it.

Two of the other babies in her room where discharged yesterday. We are happy for them and eagerly await our turn.

Sunday, May 25, 2014

Bittersweet Day

Today was bittersweet. Avigayil is doing better. Her oxygen concentration is down lower than it's been for almost three weeks and she has been keeping her saturation up longer. We are thrilled to see some progress after so long a time without any progress at all. The physical therapists have tried a new technique and it really seems to help. She also took her first real deep breath today!! I wanted to cry I was so happy.

 In the NICU you are constantly told to be patient. While other mothers are snuggling their babies and showing them off to friends, we are cuddling a plastic box and navigating a jungle of tubes and wires. We want nothing in the word more than to take our babies home. Just when we (myself and a couple other long term NICU mothers) were starting to say that we had run out of patience for being patience, Hashem reminded us how to find more. One of the babies in the NICU died today. He was premature and very sick. They transferred him to Shaarie Zedek in hopes of saving his life since it is the most advanced NICU in the country. The doctors tried and the nurses fought, but Baby Boy lost his battle. There is nothing so sobering as the death of a child. For his parents it is a tragedy beyond imagination, for the doctors and nurses a wounding loss. For the close group of mothers it is a sobering reminder that when we are at the end of our rope and ready to scream, when we feel like we are getting nowhere and life is beating us from every angle, that at least we still have hope. At least we still have our beautiful babies to pray for.

May Hashem send a complete and speedy recovery to our daughter and to all the sons and daughters of the NICU. May He help the parents to find comfort, strength and faith. Refuah Shleima L'kol Cholie Yisroel (A complete healing to all the sick of the children of Israel), Amen!

Thursday, May 22, 2014

50 Days

Today is Avigayil's 50th day of life. 50 days in the NICU. She is still on very high levels of O2 and the flow is still also very high. She is getting daily physical therapy and we are going to try to get it for her in the evening as well.

I have had a lot of time to think about things recently. How hard life has been for sure, but also about the amazing relationships we have built with the NICU staff and parents, about how incredible our community has been, about our wonderful neighbors and about how amazing people in general have been. I've been thinking about the many things that haven't gone wrong also. Today has been a rough day and I am exhausted, but IY"H (with G-d's help) I hope to share an expanded version of these thoughts with you soon. For now I will just write about one aspect.

 The NICU Staff

The staff in the NICU have been amazing. S is the secretary and usually the first person I see every morning. She is great. She always greats me with a smile and is the address to go to when you need anything. She has also helped to get appointments with doctors and to pester the right people when I needed things in a hurry.

 The nurses are also incredible. It's hard to explain what it is like to relinquish the care of your daughter, your tiny, newborn baby to strangers. The nurses understand what we are going through and love Avigayil and take are of her like she was their own. So many times they have told me how they where praying for her or thinking of her in their off time. One of them brought her a picture book to open in her crib so she would have something to look at. They fight for her and are not afraid to get in someone's face if they think it will help her. When I'm tired, afraid or just don't know what to do, they pick up the ball and charge ahead to do battle for her. I can't tell you how amazing they are.

 K is Avigayil's physical therapist. She comes every morning to treat her and usually ends up giving me some emotional therapy as well. She is positive, funny and tons of fun. I look forward to talking to her everyday. It's one of the highlights of my day.

The residents are very nice and helpful. I have become particularly close to two of them. One is R. She is always there to explain things to me and makes me feel like a friend. N is the other one. He is very encouraging and patient. He understands how to heal not just the babies but their parents also. Today when I was feeling particularly low and on the verge of tears he encouraged me to cry and then brought me chocolate. What better medicine is there?

The senior doctors are attentive and helpful. However one particular doctor has really won our hearts. Dr. I was Avigayil's doctor when she was born. She took the time to talk to us every day and even after she moved to the step-down unit (the doctors switch each month) she comes back to the intensive care unit to check on Avigayil frequently and still answers any questions we have about her care.

The head of the unit Professor S is very kind and responsive. He makes time to talk to me when I need it and has always helped me any way he can. His philosophy is that they are treating not just the baby but also the family. He says that they are not two separate entities but parts of the same whole. This attitude is felt throughout the NICU.

Monday, May 19, 2014

Still Tough

Avigayil is still having a very rough time. Her breathing is very labored and she is still on 60-70% O2. She started to vomit all of her meals and can no longer eat by mouth at all. Even after her first feeding by NG tube she still vomited the majority of her meal. She is now being given her feed over 2 hours. The idea is that if it goes straight into her stomach very slowly then her breathing will not effect the feeding in such a way that she will vomit. So far today this has worked. We are understandably frustrated by the lack of progress and the setbacks. The last several days have been very hard. She needs lots of teffilos (prayers) right now and we appreciate everyone's thoughts and good wishes for her. The good news is that she did well with her physical therapy today and we are hoping that if she can keep doing well she will start to make some progress. She spent a half hour with her oxygen saturation over 90% and had 5 spontaneous coughs during the therapy. We hope this can continue.

Friday, May 16, 2014

Rough Day

Avigayil is having a rough day. She is retaining fluid. Her breathing is very labored. Her O2 requirements are up to 60% with the pressure at 7.5 LPM. Over night the CO2 levels in her blood got very high. She keeps having random drops in her saturation that go from the low 90's to around 60 with no warning. Her heart is also having trouble as her heart rates keeps getting very quick. She is also starting to vomit and may not be allowed to continue oral feedings. The doctors have put her on a diuretic and on caffeine. IY"H (With G-d's help) this will help her breathing. Please continue to daven for her.

Tuesday, May 13, 2014

Bronchopulmonary Dysplasia

Avigayil has been diagnosed with bronchopulmonary dysplasia (BPD). This is a chronic lung disease found in premature infants. When a baby is born with breathing problems and requires intubation for extended periods of time followed by oxygen therapy, they often develop BPD. This is because the tissue develops abnormally as a result. "The cell changes in BPD take place in the smaller airways and lung alveoli, making breathing difficult and causing problems with lung function." RDS is also known as arrest of lung development, evolving chronic lung disease, neonatal chronic lung disease, and respiratory insufficiency. So what does this mean practically for Avigayil? For starters, She may be in the NICU for a while. According to the NIH in the US the average NICU stay for babies with BPD is 120 days. When she does come home she will most likely come home with a monitor and on oxygen. She may be on the oxygen for up to a year. It is possible that she will regain full and normal lung function it will not be for a long time. Children with BPD get sick easier and when they do they get sicker. She will be at risk from things like the flu, RSV, and pneumonia. Any of these will send her back to the hospital with breathing problems. She may or may not need specialized therapies for years to come. This is going to dominate our lives, at least the near future.

Friday, May 9, 2014

A Quick Update

Avigayil is now five weeks old. We spent the past 37 days in the NICU. Overall she is doing a bit better. They moved her out of the warming bed and into w bassinet. This means she can now better regulate her body temperature. Last night she had her third blood transfusion which seems to have helped her hemoglobin levels a lot. She is even taking most of her meals by mouth. Her breathing, however, is still problematic. She is using a machine called vapotherm which is similar to cpap. Her oxygen levels are still pretty high at 45 %. Her flow (the pressure required to deliver the oxygen) is also still high. She is still in intensive care. I know this update is short, but I'm still at the hospital and soon it will be shabbos. I will try to post more on Sunday.

Monday, May 5, 2014

Setbacks

I have not posted in a while because things have been a little crazy lately. Avigayil has had some setbacks. Shortly after nursing for the first time she started having some serious problems with her breathing. Her saturation levels kept dropping and she was having a lot of trouble breathing. Her O2 level was up to 60% or more.

This also caused problems with her eating. She was unstable while not eating so it was too dangerous to try to give her feedings by mouth. She was unable to take any feedings by mouth for over 5 days.

To try to relieve some of her breathing trouble they doctors backed off on the amount of milk she was getting.  They added extra calories to the milk to try to prevent weight loss. Even so Avigayil lost over 100 grams.

In addition, because of her under developed lungs, instead of taking in more air when she cries, Avigayil looses oxygen when she cries. I spent a lot of time holding her and keeping her calm to try to prevent her saturation from dropping too low. 

Then on Friday she had a crisis.  While I was holding her her saturation dropped into the low 40's (it should be 100-97%). Fortunately the doctors were in the room. It also happened at shift change and there were extra nurses there to help too. They got her saturation back up with manual ventilation and then switched her to a different type of ventilation.

At this point it was decided to give her a course of steroids. I was basically told that this was a last resort treatment and that it was only given in severe cases. B"H (thank G-d) it has been working.  Her drops are less frequent and less sever and she even took a bottle a few times today. If she is stable enough we may try to nurse again tomorrow.

She is still loosing weight but they are upping the amount of extra calories they add to the milk and hopefully that will help.

It is very frustrating to have setbacks. It is also hard to watch babies who were born after her, but at an earlier week and smaller weight be moved to intermediate care. By far though, the hardest thing for me now is to arrive at the hospital and watch smiling, happy parents taking their new babies home.

Had Avigayil's only problem been prematurity she would have been home by now. However, that is not what Hashem (G-d) wanted her lot to be. She had IUGR and low amniotic fluid This is our nesayon (test) to weather right now. We believe that Hashem does not give tests that a person is not equipped to pass. As hard as it is, we will keep going until we have passed our test.

One source of inspiration to get us through has been the amazing effect Avigayil has had on others. Every comment, every email, every text (although not always answered) is greatly appreciated. People we don't even know have stopped us in the street to ask how she is doing.  People we have never met have cried with us and have shared our triumphs. You can't know how much that has ment to us.

Its not just people who are following her story that she has effected though. She has taken the NICU staff and other parents by storm. Everyone knows our little Avigayil. She is the only baby who repeatedly extubated herself. As a redhead people take notice of her, but once she has their attention she earns their love. Avigayil loves people. Sometimes she cries just to get someone to talk to her. She loves being held and touched. Many of the nurses have told me that they spend extra time holding her because she responds so well. She even cuddles up to them. She has a pleasant manner and actually interacts with people. We look forward to the day when she can interact with the world outside the hospital walls.