The Power of Music

The NICU staff recommended that we bring music that we listened to during the pregnancy in to play for Avigayil. They said it would help her. I have to admit, I was skeptical. I mean, I like music and we even listen to relaxing music every night to help us fall asleep. While I did feel that it might be something that she could recognize and maybe make her more comfortable, I was skeptical that it would have a noticeable medical effect.

Then I saw the harp.

The NICU is a high stress environment. Everyone there simply exudes stress, from the worried parents to the harried nurses to the overtaxed doctors. It is also very stressful for the babies themselves. They pick up on the stress of everyone around them, are stressed physically from being so sick, and often are sensitive to noise and so are stressed by all the alarms going off around them constantly. To counteract this and help the babies relax the hospital brings in a harpist twice a week to play for the babies. She sits in each room and plays for them.

When she came to our room I watched as Avigayil became stiller, her heart rate dropped and her breathing evened out. For the entire time the lady was playing she not only was calmer, her stats were actually better. I was genuinely amazed. I was also still slightly skeptical, it could have been a fluke. Then a few day later she came back. This time she stopped in the middle and I saw Avigayil’s stats get worse. When she started playing again her stats got better. Then the cleaning crew came by with a floor buffer. For a moment we couldn’t hear the music and again her heart rate went up only to drop when she could hear the harp again. After that I was a believer.

We now bring relaxing piano music to her every day. It really does seem to make her better. It’s hard to believe that someone so small has distinct music tastes, but she does. She likes slow piano music and she likes harp music. She does not like music that is intense. I always believed that music had the power to make us feel, but now I also believe that it can heal.

In other news, Avigayil nursed today for the first time! She is very slow and needs to take breaks to rest and breaks to breathe, but she did it. She is four weeks old and today is the first time that I nursed my baby. I feel so much better. To me this signifies two things. First, eating is a sign of life. All living things eat in one way or another. The fact that she finally was able to take a meal in the “normal” way (ie, by mouth) is huge. Second, nursing is an incredible bonding activity between mother and child. It brings the two to be dependent on each other and allows a mother to give completely of herself to her child in a way that she will not be able to later, also in a way that no one else can (a mother’s milk is uniquely suited to her child’s age and needs). Now that she has done it once, we have to get her to do it again and then again and then get used to taking meals this way. However, achieving this first step makes me feel like we are on our way.   

We have come a long way and still have a long way to go. Few have travelled a similar path and no one has travelled this exact path. There is no way anyone can tell us how this journey will go or how it will end. No plan is possible, no map exists. Some days feel endless, others dark and scary. Today however, we came to a place in the sun. We will take its brightness to warm us on days when the light is harder to find.

Slow And Steady Progress

Avigayil has Baruch Hashem (thank G-d) been stable for the last few days. Her oxygen is still too high, and so is her heart rate. However, the doctors now feel that her heart rate is due to morphine withdrawal and that it will slowly get better over time. She has had other problems from the withdrawal over the last few days but most of the discomfort seems to have subsided. It's hard as a parent to watch such a tiny baby go through so much. Thankfully, for the most part the only symptom she is still experiencing is the tachycardia. 

Although her progress in general seems to have slowed down greatly, we are happy that she is still making progress in general. The doctors say that it will probably be a long time before they can consider moving her out of intensive care and into a step down unit, but the fact that she is still progressing is encouraging.

She has started to take some feedings by mouth. She is still having trouble coordinating the sucking, swallowing, breathing motions but slowly getting better at it. We are hoping that she will be able to nurse eventually. It is hard for her to keep her oxygen saturation high enough when eating and between that and the physical strain; she generally falls asleep after attempting to eat for a while. The rest of her meal is then given through her NG tube. While this can, at times, be frustrating, it is a sign of improvement.

I have also noticed a good way to monitor the progress of a baby in the NICU. As the baby’s condition improves the amount of equipment surrounding her decreases. Every time they take away a piece of the equipment I know it is a step in the right direction. Here is a look at the unbelievable amount of equipment that has been keeping our baby girl alive. At one point I counted over 20 machines attached to her.

Thankfully, we have watched as slowly much of this has been taken away.  As each piece goes, I thank Hashem (G-d).

In other good news, Avigayil was switched to a new type of CPAP. This machine's nasal tube is much smaller and seems to be making her more comfortable. 

Three Weeks Old

Yesterday, Avigayil was three weeks old! It’s hard to believe. These last three weeks have felt so much longer.

Avigayil is improving in some ways, she is up to 28 ml per feed and is no longer receiving TPN (IV nutrition) or IV fluids (to keep her hydrated).  Her blood pressure is much better and she is no longer on medication for it. She is also off the morphine again.

There are other ways however, that she is not improving. She still needs high levels of oxygen even with the CPAP machine. She is also having trouble with her heart rate. It is still too high. They did an EKG however during the test her heart rate did not go up. This actually made me feel good because now the doctors knew how mothers feel every time we go to the pediatrician (“I swear his fever was 105 and he was practically passed out just 20 minutes ago”).  

Dov got to do kangaroo care with her yesterday and it was his first time holding her. As he gently held this tiny baby to his chest and kissed her head I thought about how special it is to be able to kiss her. As parents we often take this for granted but since we were not able to do it for so long each kiss is something special.

I also bought her a present yesterday, her very first pacifier. She needed a specific one specially made for preemies and it cost us 70 shekels (about $23)!Hope we don't loose it.

Out of the Box

Avigayil came out of her box!!! Yep, she is no longer in her incubator. She is now in an open bed warmer. This is a step down from the incubator (also called a giraffe bed) and still a step above the bassinet. This also means she is having an easier time regulating her body temperature. In addition to this great news, she is also wearing clothes for the first time!!

But wait, there’s more. They have removed her arterial line. Another sign of improvement and something we have been waiting for.

While her blood pressure is better (it had been too high since extubation) she is now having trouble with her pulse. It was way too high yesterday (she had tachycardia). The doctors did several tests to see if they could find a reason for this, as of now they feel that it is a result of some of her medications and are hoping that by trying to change or reduce certain meds they can get it to stop. If not, she will see the cardiologist again.

I slept at home this week for Shabbos for the first time in (literally) months. After lunch I walked to the hospital. When I got there her heart rate was very high. They asked me to sit and hold her for a while and this really helped to bring her heart rate down. To try to continue with this today, we did what is called kangaroo care. This is where the baby is place on the parent’s chest for skin to skin contact for long periods of time (a minimum of 40 minutes up to a few hours at a time).

Kangaroo care has been shown to improve preemie health in many ways including normalized temperature, heart rate, and respiratory rate, increased weight gain, fewer hospital acquired infections and reduced incidence of respiratory tract disease. Additionally, studies suggest that preterm infants who experience kangaroo care have improved cognitive development, decreased stress levels, reduced pain responses, normalized growth, and positive effects on motor development. There are also many benefits for parents who do kangaroo care with their babies. The doctors want us to try to do this with her every day.

We are guardedly optimistic about all of her recent improvements. IY”H (With G-d’s help) they should continue without setbacks. For now, I am considering the sudden and marked change in her condition our own Pesach miracle. I attribute it to the many people all over the world who have been davening (praying) for her. I thank each and every one of you. We are not always privileged to see how our prayers impact the world. In this case however, we can clearly see how they are helping.  I humbly ask that you continue your teffilos (prayers). Thank you.

No Words To Describe the Emotions

 It's been 2 1/2 weeks since she was born. Today I held her for the first time. I have no words to tell you how I felt.

Good News! And Pictures Too!

We are still waiting for the results from Avigayil’s latest blood tests. Staph infections in the blood are potentially very serious and she could really use your continued teffilos.

We are happy however to give you the good news that the extubation was successful and Avigayil is off the respirator! She is now on CPAP which augments her breathing instead of breathing for her. She has also been weened off the morphine. We are very happy with this progress.  

Early pictures of Avigayil.

Avigayil yesterday, after the extubation.