Monday, August 29, 2011

So long, NICU…Welcome home Ethan!

Ethan is home! We are all thrilled, and yes, utterly exhausted.

Ethan came home today after a week of final preparations at the hospital for his discharge. Despite an earthquake and a hurricane, we were able to leave the hospital only a day later than originally planned.

There is a lot to say about this entire journey, and I’m sure I’m still processing much of it. There has been a lot to learn - from a medical perspective, as a new parent and a new parent of twins and a new parent of twins who also has Type 1 diabetes, and lots and lots of spiritual/emotional lessons. I have been reflecting for quite some time now on what I can learn from this experience, and here’s what comes to mind as my top five:

5) Be mindful of facts and feelings – at the right time. It’s good to be mindful of one’s emotions, accept and process them. But sometimes, those emotions need to be checked at the door when the time isn’t right. I’m a better listener – and a better mother - when I just listen to the facts, not the feelings, when discussing matters that require my undivided attention – such as a meeting with a doctor. That’s probably true for everyone.

4) The power of prayer. It’s remarkable. But always be mindful of what it is you are praying for, and you will receive abundance in return.

3) Be thankful. Savor each wonderful moment life hands you – and even the not so wonderful ones – and be thankful for them. And be sure to thank God after receiving something you’ve prayed for.

2) Listen to and trust your intuition. I don’t know how many times I left the NICU crying because the doctors painted a dismal picture. But my gut kept telling me that Ethan is just fine or a specific direction to take or a good question to ask. Always trust your gut feelings. They are more often true than not.

1) Trust God/the Universe/or however you may call it. When you trust that the Universe is working in your best interest, forces are moved and set in motion to deliver the best possible outcome to you. It’s true. Really, I mean it. I have found time and time again – during the best and worst of times – that when I trust the Universe, every need I have is delivered in the most efficient and best way possible.

Ethan and Aria are asleep right now. We have music playing in the background. Lior is taking a nap. And I can’t help but think that it’s time to move on and forward. To process everything and finally relax into it. Take a vacation, enjoy life and our kids. We’ll see what the Universe has in mind for us next.

Monday, August 22, 2011

blog break

Hello everyone,

There's a lot going on in the world of the NICU, and I am unable to post a new blog today. I am already working on next week's post though! Please stay tuned....

Warm regards,

Monday, August 15, 2011

Lessons from the NICU: Getting over the Type 1 diabetic guilt, anger, and other related feelings

It’s time to address the elephant in the room. Is my newborn son Ethan in the NICU (it’s been almost 14 weeks now) because I have Type 1 diabetes? Which I’ve had for over 36 years, very well controlled now but not always so. And I was pregnant with twins; Aria is his sister. And I had them at an “advanced maternal age” as those high risk doctors call it.

If you ask me, the answer is partially yes, but no one will say that definitively. The reason that Ethan is in the NICU is because he was born very, very, very small, and is working on recuperating from things associated with that. He stopped growing at 26 weeks in utero because of negative diastolic flow – which means that the blood and nutrients were flowing out of his placenta rather than into it.

Why did this happen? No one can say for sure. I asked one high risk doctor, and he said: It could be diabetes, but there could be other reasons as well. “We don’t know.” Another high risk doctor told me that it is most likely due to the diabetes and the fact that I was pregnant with twins. It’s quite a lot for a Type 1 diabetic body – who has had the disease for quite some time - to handle, she said.

To be honest, the diabetes theory makes the most sense to me and is the prevailing one in my book.

So that leads us to the emotional side of diabetes and pregnancy: The guilt. The anger. The feeling that life just isn’t fair sometimes. The feeling of responsibility for putting him in the situation he is now. Starting his life out in a hospital with beeping monitors, pricks and prods, tests galore, strangers feeding you in shifts every 12 hours, the whole shebang. He’s just a baby. The nurses try to make it comforting, like home. They hold him, talk to him, and let him play. But still, it’s a hospital. Away from the home he still hasn’t gotten to know and love. Or the family he sees a few hours a week.

This is not what I dreamed of or hoped for. I dreamed of bonding, walks in the park, cute little outfits, and lots of cuddling time. I’ve had all of those things with Aria, and barely with Ethan - only with nurses, doctors, and monitors in the same room.

How do I let go of that? How do I become at peace with what has happened?

Fred Luskin, author of Forgive for Good and cofounder and director of the Stanford Forgiveness Project, says that mindfulness and focusing on gratitude and kindness are the antidote, as told in Letting Go found in the May 2011 issue of Oprah Magazine. Luskin says that these concepts apply to any disappointment or hurt that any of us has experienced. It does not have to be as traumatic as a newborn child in the NICU. It could be as simple as someone taking your spot in a crowded parking lot.

I did my best to make my pregnancy a healthy one. And it was. My A1C’s varied between 5.8 and 6.1. I exercised as doctors prescribed. I gained a healthy amount of weight. I monitored my sugars and calculated carbohydrates. I visited doctors and listened to what they said. I came out of this pregnancy healthy. Aria came out of this pregnancy healthy as well. We’re thriving.

And Ethan – who was predicted to not even make it – came out of it with some feeding issues, a little small, and a few other things which he has already outgrown. He’ll outgrow the feeding issues as well, and of course, he’ll outgrow being small.

I willingly chose to have children, to get pregnant, despite the diabetes and my age, fully knowing all the risks involved. It’s a decision I made that I do not – and never will – regret. I have two beautiful children, and I love being a mom. I cannot feel guilty for that. And I don’t. Just the opposite: I’m grateful.

Monday, August 8, 2011

Becoming a NICU Warrior Mom

Ethan and Aria were born prematurely thirteen weeks ago. Ethan has been at the NICU (Newborn Intensive Care Unit) since he was born. I have decided to devote the next few blogs to sharing the lessons I am learning from the NICU experience.

I have been transformed into a warrior mom during my son’s journey at the NICU.

In the beginning of Ethan’s stay, I was quite the opposite of a warrior mom. I was completely overwhelmed the first few weeks actually. I was recovering from a c-section and had a newborn at home on top of having a child in the NICU. I was sleep-deprived, and my body was going through a huge hormonal transformation. I was overwhelmed with guilt regarding both children, feeling torn between them, and in the meanwhile, not taking as good care of myself as I needed. I missed Ethan terribly, but wanted to be fair to Aria as well. My feelings of guilt have not gone away, BUT I have come to accept that we’re doing the best we can with the situation we’ve been given.

That feeling of acceptance of the situation took a while. And in the beginning of his stay, all of those feelings I just mentioned were distracting me from the matter at hand – providing Ethan with the best, most loving care possible.

I listened to what the doctors said about my son and his care. I asked questions, but I didn’t question. I didn’t want to upset any of the nurses since they were with my son, caring for him, much more than I was.

Then issues began to transpire. I was not happy with some of the directions that were being taken regarding his care.

One of the issues that concerned us (and still does) was consistent care and the passing on of information: The doctors work on rotations. The nurses work in shifts. The residents are there on a monthly basis. We found that each doctor has their own approach, and plans would change constantly. People are human, sometimes details get lost when passed from one person to the next, and messages were not necessarily being passed on from nurse to nurse effectively.

What this means is that our son was being passed from one hand to the next, and not receiving the same care. So he became inconsistent. For example, eating really well one day, and not the next. Growth and eating healthy are very crucial parts to a baby's well-being. My husband and I were the only consistency in his life, and we couldn’t be there all the time.

Time was passing. I wasn’t at the stage where I could see what was going on clearly. And I couldn’t understand why my son was still there or what was keeping him there. What still had to be done to get him home?

I really didn’t know who to speak with about the issues, and it was hard for me to put a handle on what was bothering me exactly. I was more emotional than effective. So I would speak with the nurses. I developed relationships with many of them. And as I spoke to them more and more – and spent more and more time at the NICU, I began learning how things work around there.

One of the nurses suggested that we ask for a family meeting to discuss a plan for discharge with the doctor. My husband took a day off from work. We brought Aria with us. And we sat with a team of doctors involved in his care, along with a nurse Ethan had never seen before and one of the residents.

We asked about the plan for discharge, or the plan for getting him ready for discharge. The doctors seemed to have a different agenda for our meeting though. They wanted to talk about their search for an answer to the BIG question: Why did my son stop growing in utero at 26 weeks? Is there something else going on besides being a small, premature baby?

The doctors told us about a series of tests they had run and were going to run. And their theories as to what could be happening. And I was overwhelmed with emotions once again: Oh no, what are they going to tell me that my son has? I thought we were going to talk about my son coming home. I knew they were running tests, but I hadn’t given them much thought. (In the meanwhile, all of the tests have come back normal.)

It hit me a week after that meeting, after I had gotten hold of my emotions. If he has something, we'll deal with it. That's not keeping him in the NICU though. Right now, our focus and our main goal is to get him home. I had been distracted by other things rather than doing everything I can to get him discharged. My son needed me to be more involved. Like super duper, above and beyond involved. I needed to be clear-headed, understanding, prepared, smart and intuitive. I needed to speak up when I didn’t understand or was unsure of a treatment. I needed to be on top of things. I wanted to know about every test, every feeding, every prick, and every poop.

My husband and I began doing research. Asking questions. I began speaking to the doctor every day, and I still call the nurses several times a day to ask for updates. I started taking notes and tracking his progress. I wrote down the names of all the tests and asked for reports. I want to know EVERYTHING. I learned how they calculated certain measurements, and I began calculating them too. We complained to the NICU bosses regarding consistency in care, and sure enough, notes began appearing on our son’s crib with plans of care. And when something doesn’t go the way I think it should go or am confused about how it should go: I speak to the doctor, the nurse manager, or the patient relations representative (depending on the situation) and things get taken care of immediately.

I really don’t care if people like me or not. This is my son’s care we’re talking about. Yes, it is more effective if I approach practitioners in a user-friendly way, and I do my best to stay calm, clear, and understanding. That’s for sure. But that doesn’t mean that I have to go out of my way to please them if I see a problem either.

In the meanwhile, I have come to realize that the NICU staff – from the doctors to the nurses to the secretaries – really, really, really do care about our son’s well-being. And they will do whatever they can to help him. I know that for sure.

We’re all human. We all try our best. And our best might change at any given moment. And that’s why I’ve decided to become as clear as I can be of emotions that hold me back, and to transform into a warrior mom.

Monday, August 1, 2011

Parenting as a lesson in presence

“Why didn’t I have kids when I was younger? I am too old for this! Too old! There’s a reason why people have kids when they’re younger!!!!!”

Yup, I said it. I actually cried those exact words at 4 am about two months ago.
Aria was about three weeks old, and she had woken up to be 3 am. Well, she had also wanted to be fed at 9 pm, 11:30 pm, and now at 3 am. She would probably wake up again at 5:30 am, her favorite morning wake-up time.

I stumbled around the house to get her bottle, and fed her as I always do in the middle of the night. Somewhat zombie like. She is a really good eater, a champion, but back in those days, she had trouble going back to sleep after a feeding.

I felt helpless trying to figure out how to get her to sleep.

We thought she may have day/night confusion. It very well could have been. We spoke with nurses and doctors. I read books about healthy sleep for baby. She would cry and cry and cry. We thought it may be colic. But she was fine as long as either Lior or I held her.

I didn’t know all the ins and outs of newborns yet. I didn’t realize that gas and poop actually hurts them and can keep them awake until it passes. I didn’t realize that babies need swaddling, swaying, soothing, sucking, and sounds to help them fall asleep. I didn’t realize that they need to be held and loved to sleep soundly. I was a newcomer to the world of parenting, and my mind was not letting me ease into it gracefully.

And I really, really, really wanted to go to sleep! No, wait, it’s more like I needed to go to sleep. Not only is sleep important for all humankind, but I also needed to keep some level of sanity during a very stressful time. We have one newborn at home and the other at the NICU (Newborn ICU). I was also recovering from a c-section, managing Type 1 diabetes, and adjusting to a big change in lifestyle. I was really losing it, and I needed sleep to help keep my inner peace.

The next night after the “I’m too old” cry, I prayed. Boy did I ever pray. I prayed for sleep. And then I heard the words: Presence. Be present with her.

So I tried it out. I swaddled her tightly after her 3 am feeding (in a Velcro swaddle, a parent must-have), held her, rocked her, and placed a pacifier in her mouth. And I watched her. Smiled at her. And did my best to be present with her.

And she smiled in return.

I asked her: Aria, what do you need to fall asleep? And I heard a little voice inside my heart say: Love.

I rocked her for ten or fifteen minutes, and I was present with her. And she fell soundly asleep and has been every night after the 3 am feeding ever since.

Newborns are so pure. Their minds have not been encumbered by the world yet, by our mind’s chattering. And Aria constantly reflects back to me whatever she can sense in me. If I’m frustrated or angry, she cries. If I’m upset, she’s upset. If I’m smiling and loving, she is too. Newborns are a mirror to our own souls, our own hopes and fears. And they are an incredible lesson in presence, mindfulness, and intention setting.

This lesson is definitely one that translates to relationships with other people as well – adults and kids included. People want to be heard, and they can sense when they’re not. Or when you are judging, frustrated, happy, and/or loving. I have often felt that when I enter a conversation with someone else that I bring my energy, my sense of self, my intentions, and my state of mind at that moment. If I bring clarity and compassion, then I find that the person across from me responds in a similar way. If I smile, they smile. If I am agitated, they become agitated or become even more so.

I set an intention before Aria and Ethan were born to be present with them, to listen to them, smile at them, and to let them know they are loved and they are heard. I do the best I can, and I’m not always there. Sometimes they remind me with a whimper, a smile, a coo, or a cry. And then I remember that the best I can do is be there with them – through it all.