“I am a simple Buddhist monk — no more, no less,” His Holiness Tenzin Gyatso, the 14th Dalai Lama of Tibet

I had the honor and pleasure of seeing his holiness the 14th Dalai Lama speak at Conseco fieldhouse today. Thousands gathered in rockstar groupie fashion just to be in his presence. He was introduce by both John and Elaine Melloncamp and when he entered the room, I wept.

He sat humbly on stage and spoke with a candidness that made me feel as if he was talking only with me. He talked about the paths to inner peace and about the importance of religious harmony. He was powerful yet gentle and most of all, happy. You could feel it, see it and hear it.

I have always been interested in different religions and spent some time practicing a type of buddhist meditation called “mindfulness meditation” when I lived in Bloomington. I found it most interesting to hear him talk about the necessity for a variety of religions for the varying different mindsets that exist around the planet. But, he also made it clear that all the world’s religions share the same core values. Love, tolerance, forgiveness, self-discipline & compassion. Different paths to the same end goal. PEACE.

It was both an honor and a priveledge to be there today. It’s an experience that I will always remember.

To read more about the 14th Dalai Lama you can visit his website at http://www.dalailama.com/

The past 2 years have been the toughest two years of my life….and if you know me well, that is saying a lot. I am no stranger to hardship and have overcome my share of adversities. However, I was not prepared for what life would throw at me this time around. Winston Churchill said, “If you’re going through hell…keep going.” And that is just what I am doing.

I have been quite absent from many things in my life lately, including, but, not limited to this blog. As you can see from my last post almost a year has gone by since little Samson was born. He is totally healthy and is a thriving and active 11 month baby boy. He left Riley hospital with only a prescription for a multi-vitamin (which I refused to give him btw because I’m just a rebel like that). After everything he went through, he is as normal as he can be now with absolutely no ongoing health issues resulting from the meconium aspiration or his prolonged hospitalization.

The rest of us haven’t faired as well. Our family (especially me) has been in turmoil since not long after his birth. I was not prepared for the emotional fall-out of having a newborn in the NICU or the resulting postpartum depression that followed. I have been in a deep/dark place the past year and am just now starting to see the light of day. With the help of many good people, I am beginning to regain my strength and once again engage in life in a healthy way.

I felt it necessary and appropriate to update here since this is where it all began. I’ll be back regularly to post images and happenings from both my personal and professional life. I just want to thank all of my loyal followers for not giving up on me. I’m back.

Thought I’d write a quick update since so many of you are asking about Samson. I haven’t been updating regularly because nothing has really changed. He is still stable and doing well….just not well enough to come home yet. 

He is off the ventilator and on the nasal cannula at 30% oxygen (21% is room air/what we breath). They took out his central line (an iv/catheter that is inserted into a main vein and advanced till it reaches the heart, delivering fluids & medications in a more direct way) and have been giving him his pain/sedation meds orally. They are in the process of weaning him off of these drugs, but, they have to do it in small increments. If they go too fast, they run the risk of causing him to withdraw. 

Everyone keeps asking, “When is he coming home?”. Believe me, I wish I knew. No one is more anxious for that to happen than I am. Unfortunately, they cannot tell us exactly when. The main thing that is keeping him there now is a condition called Tachypnea, which basically means fast breathing rate. His respiratory rate is high, around 80-90 and sometimes up over 100 breaths per minute. Normal for a newborn is about 40 breaths per minute. 

This is normal for a baby with his history and they expect it to resolve itself eventually. Actually, we had hoped it would have resolved by now. Until his respiratory rate is below 70, he will not be able to breast or bottle feed. The doctors are worried that he would aspirate or choke on the milk. It would be like us running a marathon and then trying to drink a gallon of water. Until he is eating and gaining weight, they really don’t want him going home. Although, today, the doctor mentioned sending him home with the NG or nasogastric tube for feedings. Don’t really want to go this route…but, will if we have to. 

We are thinking about transferring back to Clarian North. We have been very pleased with our experience at Riley, but the kids have not been able to visit and they are having a hard time. You can imagine how difficult this has been for them. They just don’t understand. What’s wrong with him, where he is and why they can’t hold him, etc… I think it would do them a world of good to be able to see him and that could happen regularly at North. 

Wish I could tell you more, wish I had a specific date. It is hard to live with the unknown. Hard to have so little control. We are being tested in every way imaginable right now. We need your continued support in the form of prayers, visitors, help with the kids, etc…nothing you have to offer would be refused. Thank you for everything you have done and continue to do. We love you all.

Lots of great stuff happening with our little warrior. He is now on the conventional ventilator at 26% oxygen (21% is what we breath in room air). He has totally weaned off of the nitric and the dopamine (both of these were helping open up his blood vessels to fight the pulmonary hypertension). He has now started receiving a small amount of breast milk through his feeding tube and he seems to be tolerating that very well. He had his first bowel movement, bath and is sporting some new digs. We got to hold him for the first time yesterday and today and I can’t get enough! We held him pretty much ALL day today. You can tell he really loves it. 

What he doesn’t love, is that yucky tube down his throat! Now that they are weaning him off the sedation, he is much more aware of how uncomfortable it is. He has been trying his best to pull it out. He even attempted to gag it up while I was holding him today…but, unfortunately for him, it’s pretty secure. They are thinking a couple more days and he will be totally extubated.

Once the tube is out, we will start working on oral feeding. Can’t wait to start this process. It will be a little harder on me as I will need to available every couple of hours around the clock to breast feed. But, I’m confident he will do great and it will be well worth it in the end.

It’s just amazing how far he’s come in such a short amount of time. We really love his doctors and nurses at Riley and the medical attention he is receiving is absolutely of the finest quality. So glad that he’s right where he needed to be.

First of all, I would like to thank all of Samson’s loyal followers. I have been telling him about the huge fan club he has and he is very appreciative! And since I know you’re all dying to know, here’s what’s been going on since my last post. I hope you will find this one a bit easier to read…it certainly was easier for me to write.

Over the weekend, we had been following Samson’s blood gas analysis (the thing that tells us how much oxygen he is getting in his blood). We were getting report’s every four hours and were hanging on to those to numbers for dear life! The doctor’s like for them to be above 100 and we knew that if he had several “bad” results in a row, that we were headed to Riley. 

Sunday afternoon, his numbers starting dropping below 100…then he had three really low (45-50) test results in a row. The neonatologist on call that night felt that he needed to be transferred to Riley then, before he got any worse. They didn’t want him to get into a “critical” place and have to be transferred under such dire circumstances. If he did not start improving, he would need ECMO and they wanted him to be in a place where he could receive that if necessary.

Cut to me totally loosing it upon hearing this news. First of all, we had been given several worst case scenarios and this one was by far the worst of the worst. Only REALLY sick babies go to Riley and our baby was headed there. The fear was practically paralyzing. I am so grateful my mom was there with me because I would have been alone if not. Definitely one of those times that will be forever embedded in my heart and mind.

They called ahead to Riley and prepared a transport team to come and get our baby. I was unable to fight back the emotion as I was signing all the consent forms. One of my favorite NICU nurses came over and put her arm around me and said, “Why don’t you go give him a little kiss on the head…”. I’m sure she knew how much this would mean to me as up until this point, I had not even been able to touch him (except for a moment right after delivery). I went into his room and leaned in to kiss his sweet head. I closed my eyes and took a deep breath in.  I can still recall his sweet baby smell now as I write this. I walked out of the room with tears streaming down my face. His nurse hugged me and told me she had a good feeling about him. No amount of reassurance could have comforted me.

My mom and I drove to pick up David and then to the hospital. When we got there, we were directed to a family waiting area and told that once he was there and settled in, the doctor would come out and speak with us. I didn’t like this. We had never been denied access to his room at Clarian North. We waited for what seemed like an eternity. We weren’t even sure if he was there or if he was ok.

The family waiting area was dirty, cold and unaccomodating. I immediately formed my opinion of the place and it was not a good one. For those of you who were following, you’ll remember my status update reading “I DO NOT LIKE THIS PLACE….AT ALL!”. No cell service, no private rooms, no snack station or even a vending machine in sight? I just couldn’t believe it had come to this.

FINALLY, after maybe a couple of hours, one of the nurses came out to speak with us. I don’t even remember what she said, except that we could go in and see him now. The room was bright, loud and filled with doctors, nurses, residents, interns, respiratory therapists, nurse practioners, oh and 5 or 6 other sick babies. A far cry from his dimly lit private suite at Clarian.

We spoke with the doctor who explained that they had discovered that his left lung had collapsed and that was the reason for the low gases. After only a few hours at Riley, they were able to inflate his lung and get his numbers back up above 100! David stayed at the hospital and my mom took me home so that I could sleep on an actual bed. Already, my attitude had changed. I left Riley feeling reassured and confident that he was where he needed to be (even though the accomodations were somewhat lacking). Funny how the thing that I feared the most, ended up being exactly what he needed. 

We received updates every four hours that night and on into the next day. I remember getting a text from David at 4:00 am that his latest blood gas was 298! I freaked out….couldn’t believe it…how was it even possible to go from 50 to 300 in such a short time? His scores continued to be in this range the whole next day. The doctors said they were “happy, yet, cautious”. That he was doing well, but was still on a very high level of support.

I believe it was the next morning at rounds that they started discussing weaning him off the oscillator. I was nervous about this, because they had been so conservative at Clarian and I didn’t want them to rush into anything for fear that he might have a relapse. But, the doctors felt he was ready, so they began to slowly lower the amount of oxygen they were giving him. They were giving him 100% oxygen, the air we breath is around 21%. They have been weaning him at a rate of about 2% every hour and he is now at about 36-38%. In addition to the oxygen, they have also begun to wean him off of the nitric oxide, the blood pressure medicine, the sedation and the antibiotics he is on. He is responding very well to all these changes!

Today or tomorrow they will likely be switching him over from the oscillator, to a conventional ventilator. The main difference, as I understand it, is that the oscillator pushes the air in and draws it back out…essentially doing all of the work for him. This was necessary in the beginning to allow his lungs to totally rest and heal.  The machine is also loud and causes his chest to shake & vibrate rapidly. The ventilator will assist his natural breathing pattern and allow him to do more or most of the work himself. In addition, the tubes and cables are longer and more flexible than the oscillator, allowing us the opportunity to hold him!

The plan is to continue to wean him off the ventilator to a cpap. Cpap stands for continous positive air pressure. It’s primary funtion is the same as the ventilator, to pump pressurized air into the lungs, however, it does so without the need for intubation (the tube down the throat). After that, they may need to use a nasal cannula (clear tubes in the nostrils) if just a bit of oxygen & pressure is needed.  I am becoming quite an expert on things I wish I never had to know anything about.

The doctor told me today that they may also begin to give him a little breast milk through his feeding tube. Up until now, he has been fed intravenously, getting sugar water and tpn (total parenteral nutrition), which includes, salts, glucose, amino acids, lipids and added vitamins, thru his feeding tube.

As many of you have seen, he is beginning to wake up, look and move around quite a bit. It is so encouraging to see this. At the same time, I worry about him being uncomfortable. He squirms around and looks as though he is trying to cry, but, because of the tube, his vocal cords are disabled. We have learned that he loves to have his hand held…any time he starts to fuss, I just hold his little hand and he settles down right away.

Overall, we are very hopeful. The doctors are now saying that the best case scenario would be for him to be here for two weeks, worse case 4-5 weeks. Much of it will depend on Samson and how he responds to the weaning…he will set the pace. Also, once he is off the ventilator, they will start to introduce oral feedings. Some babies who have been intubated have trouble with this and require a prolonged stay in the NICU to be sure they have it mastered before heading home. I’m sure we will be asking for more prayer support when we get to this stage…one day at time for now though.

We love you all and appreciate the outpouring of love you have shown. Especially those of you who continue to follow his story on bated breath! BTW - I was curious exactly what “bated breath” meant so I looked up the definition for the term and thought it was worth sharing: bated breath refers to a state in which you almost stop breathing as a result of some strong emotion, such as terror or awe. Perfectly describes how we are feeling waiting for our little guy to come home!

EDITED TO ADD: I wrote this while spending the day sitting in Samson’s room. This was all before his dip yesterday and the decision to transfer him to Riley. I’ll try to write more about what happened in the afternoon and evening and how things ended up the way they did when I get a chance…

I’m finally getting a chance to write a more in depth update on what’s going on with Samson. First of all, we cannot thank you all enough for the outpouring of love and support. It has literally carried us through the past few days. I am so grateful for every call, text, post, comment etc…

How it began…

I started contracting regularly Tuesday and by early Wednesday morning things had progressed to the point of calling our ob. We arrived at the hospital to find that I was dialated to 4cm, I was admitted and began the laboring process. A couple hours later, my ob arrived and broke my water. It was then that we discovered a large amount of meconium in the amniotic fluid. A level that was so thick they refer to it as pea soup, both in consistency and because of the greenish shade of meconium. They immediately began Amnioinfusion which is where sterile fluid is placed inside the uterus via a catheter to help dilute the meconium. There were no other signs of fetal distress.

Because of the meconium, the NICU team was in the room at delivery. They took Samson right away and began suctioning out of his airways. In the process of trying to remove a huge chunk below his vocal chords, they stimulated his breathing and it went straight to his lungs. 

Here is an idea of what exactly is happening in his body: “The inhaled meconium can partially or completely block the baby’s airways. Although air can flow past the meconium trapped in the baby’s airways as the baby breathes in, the meconium becomes trapped in the airways when the baby breathes out. And so, the inhaled meconium irritates the baby’s airways and makes it difficult to breathe.

MAS can affect the baby’s breathing in a number of ways, including chemical irritation to the lung tissue, airway obstruction by a meconium plug, infection, and the inactivation of surfactant by the meconium (surfactant is a natural substance that helps the lungs expand properly).”

They took him to the NICU and put him first on oxygen,  then a ventillator and eventually, the oscillator. All in an attempt to help his body do these things: expand his lungs, make sure his blood is properly oxygenated, etc… The first day or so is really a blur.

We had a meeting with his doctor on Thursday, where we were informed that he would probably get worse before he gets better. That babies with MAS tend to have a “honeymoon phase” where they respond well the first few days and then they have a dip or drop. Sure enough, the doctor was right, Friday was a really bad day for Samson. His blood gas analysis (a test that helps determine if the baby is getting enough oxygen) results were not good. He prepared us for a possible trip to Riley hospital to be put on ECMO (Extra corporeal membrane oxygenation) which is a form of cardiopulmonary bypass, meaning that an artificial heart and lung will temporarily take over to supply bloodflow to the baby’s body. PHEW!

They started “Rescue Therapy”, where Nitric oxide is added to the oxygen in the oscillator. It dilates the blood vessels and allows more blood flow and oxygen to reach the baby’s lungs and he started to bounce back over the weekend. Since then he has had dips here and there but, has continued to remain stable. 

I’m trying to keep this all in order and be as accurate as possible, but it is tough. I feel like I’ve lived a lifetime in past couple of days. 

The doctors have said that they will not even consider taking him off the oscillator for at least 7-10 days. And that it will take at least that long to wean him off of it. We are just hoping and praying that he continues to remain stable and respond well to the treatments, so his body can eventually absorb the meconium (which is unfortunately, the only way to get rid of it). Once this happens, they say he will turn a corner and start to really get better. Then they will begin to introduce feedings, allowing us to hold him, etc…

Right now, they are doing a blood gas analysis every four hours or so. We are being updated regularly with these results….even throughout the night. I’m also up every few hours to pump (they are storing my breastmilk for when he is able to eat)…which is why you will see me on facebook posting and commenting at all hours of the night.

How are we?

As you can imagine, this is unbearably tough. We feel fortunate to have the support of our friends, family and church & recovery communities. Right now, the hospital is providing a room for us and three meals a day for me. David has taken over primary care of Mary & William, while I mostly stay here to be with Samson. Although, now that I am beginning to feel better physically, we will likely start to switch off a bit. 

How are the kids?

They seem to be doing well. Of course, they do not understand why their baby brother cannot come home, can’t be held, feed, etc… After all, these are the things we’ve been encouraging them to look forward to for the past nine months. It is tough to explain to them, but, keeping it simple seems to work best. Samson is sick and he’s staying here so that the doctors can make him well. As soon as he’s well, he’ll be home with us. Mary has been to see him twice for a short period. Yesterday, when we left the room, she said, “Is he real?”. Bless her heart! In her defense, he doesn’t move or cry…since they have him totally sedated.

What do we need?

First of all, we need continued support through prayer. We really do believe that God is in control and is working everything out for our ultimate good. We also need help with Mary & William. We are trying to keep things “normal” for them and at the same time, provide them with activities to help keep their minds off of things. Please let our dear friend Arin (arinbrooke@gmail.com) know if you want to volunteer to hang out with the kids. We are set on meals right now, but, would definitely welcome that later after the baby comes home. And, even though Samson can’t have visitors, we still welcome our friends and family to come see us at the hospital. It gets really lonely being here for hours on end with virtually nothing to do except sit in a room. We want people here to keep us company, pray with us, distract us, encourage us, etc… 

Hopefully, this helps give a little more meaning to our situation. I will try to post here occasionally, but it’s just been easier to do on Facebook. And, btw, thank God for Facebook! It has helped me feel connected to the rest of the outside world. It has also been a great source of distraction. 

Once again, thank you to everyone who has called, visited, emailed, prayed, etc… We cannot thank you enough!

So sad to see that the last time I updated my blog was when this little guy was still on the inside! Well, not anymore. Here’s baby Gus….oh my, what a cutie. I’ll admitt, seeing him did make me extra anxious to meet my little guy. Only 3 more weeks for me…but, really I could go anytime between now and then. Wish me luck!

So thrilled to show these lovely images! What a beautiful family. I really enjoyed working with them…especially Sophie, who was so totally cooperative and did everything I asked her to do and more! She is really what made this session such a success. Enjoy.

Before I share the rest of the photos, I have to share the original email I got from this client. 

> hello there! i wanted to let you know my 4 month old son loves your site. when he gets fussy and it\’s not time to go down or eat i turn on your webpage and he just sits in my lap and listens to the music and the moving pictures. he melts! i think it’s so cute! also - i am in love with your work! the first several times i came to your site i teared up.<

This popped up in my inbox and made my year! I love getting emails like this. I am so glad to hear when people are moved by my photography…even and especially, when it’s not their own family!

She also shared with me that she was saving money to have me do photographs for them. That she was even asking for contributions to the “Brandy Cunningham Photo. Fund” for christmas. I thought to myself, this is someone who really values good photography.

Turns out, I was absolutely right! I finally had the opportunity to meet her and her beautiful children in person…and the results are stunning.I enjoyed meeting both kids and spending time chatting with Kara. She has a real passion for photography and knows/follows many of the photographers that I admire. The fact that she chose me to work with is truly an honor. K-hope you enjoy the sneak peek!