Category Archives: Perinatal Hospice

Michael Dean

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Had a baby this past morning from “The Corner.”

The baby boy had was born at 23 weeks. I received the text from Hilary and she and the photographer were meeting at the hospital at 9:30. I quickly showered and headed out the door.

I did what I’ve done twice before. I asked God for the strength and grace to help the family. I prayed that He would let me “keep it together” when I saw the baby. I arrived at the hospital and met a new photographer who I hadn’t seen before. She’s been with the network for many years, first doing what I do, then moving into the photography aspect of it.

The baby was the smallest I’ve seen. He was perfectly formed, just like the rest. He looked like doll. I helped Hilary bathe him, weigh and measure him and put baby lotion all over his tiny body. “We want him to smell like a baby,” Hilary whispered. He is a baby. I knew what she meant, it just struck me as wrong.

After taking the ink prints and doing the moldings in the clay, I put him in a tiny outfit that had been knitted by other volunteers. The mom and day had pictures with their baby and we talked about funeral arrangements. The family had the box of stuff that we brought for them and the promise that in 10 days they would have photos of their baby. I did everything well and was amazed at my strength in staying calm. I still don’t know how I’m doing this.

After we left the hospital, Hilary gave me an “official” baby for the network. I have everything I need to do what Hilary does. I have tiny outfits, blankets, diapers and clay. I have the paperwork to give to the family and the information I need to fill out when I’m with the family. I hope and pray that I am going to have the strength to do this on my own. That I am going to be able to give the baby dignity and grace.

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Balancing Act

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I received a text from Hilary today at the perinatal hospice network. I’m going to start calling this network “The Corner” for convenience. (You can read more about that here and here.) She asked me if I thought I would be comfortable taking on-call nights at the end of March. She’s making the schedule now and needed to know if I would be available. She did, however, say that she wanted me to go on a shadow visit with a smaller baby so that I’m prepared for that scenario when it arises. I agreed that I would like to do at least one more shadow with her and that I should be able to go on visits on my own by the end of next month. Scary. Thought.

I need more information from her on what to say to the families who have had the demise. I so don’t feel like I’m going to be ready for this until I’m actually in this situation. You can only prepare yourself so much… and after that, you just have to have faith that you can get through it. Hilary said the hardest “type” of baby would be the smaller one. She said that sometimes they can look a bit… gruesome. It will also be the most difficult because it hits the closest to home. Only time will tell if I’m able to handle it. I’m enclosing a picture of the blankets that I gave to Hilary when we met at the hospital for Baby Grant. They are small knitted and crocheted blankets, about 18 inches square. These are for the little ones… Babies between 12-18 weeks.

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I’m currently crocheting a bigger blanket for the bigger babies, but those take a bit longer. I want to help them in so many ways I think it’s starting to consume my life. They are having an event on March 7th that I’m hoping to attend. It’s a silent auction dinner and they have some pretty impressive stuff to auction off. Hilary asked me if I would also help put together baskets for the auction as well… Just taking the things that have already been donated and putting them into baskets and making them look presentable and appealing. I’m hoping to attend the event, but it will depend on whether or not I’m back to work yet. I’m so grateful that I’m able to help others… trying to figure out how to balance it all is going to be the struggle, but it’s the least I can do to help these little guys and their families.

Baby Grant

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Unfortunately, the second baby I shadowed came a lot sooner than I thought it would. On Wednesday the 19th, I received  a text from Hilary at 7:46 AM:

“Good morning. We have a baby in the NICU. Would you be interested in going this morning? We are meeting at the hospital ER at 8:45.”

The text also gave information to which hospital, which was the same “Hospital A” from my last post. Hospital A is the hospital I’m most familiar with, and the hospital where I had my miscarriages at. I knew that if we were meeting at the NICU, we were probably going to be dealing with a baby that was very sick.

I got to the ER and one of the nurses came to get me. Hilary and Kathy, the photographer who was on call that morning, were already up in the NICU. When we got up to the floor, room 220, Hilary and Kathy were waiting outside the door. Hilary briefly gave me a description of the baby. A boy… Baby Grant William. The mom delivered at 25 weeks. He was a little kiddo and just didn’t make it. He wasn’t super sick and the mom was very healthy. They didn’t know why she delivered so early and his little body just wasn’t ready to be on the outside world yet. He had been in the NICU for 4.5 weeks… He was 29.5 weeks when he passed away. Kathy later told me that the bowels are one of the last things to form on a baby. Because his hadn’t quite finished forming yet, he got an infection and became septic.

Before we went in the room, the grandma of baby Grant was just coming back from down the hall. She was hysterical. She peeked her head in the room and said that it was ok for us to go in. I let Hilary and Kathy go in first. There were a couple of nurses in the room, as well as the mom and the dad. They were standing and had their backs to us. The baby was laid out on a table with a blanket beneath him; the mom was washing him. He was little. I’m not sure how much he weighed, but I wouldn’t have guessed more than a pound or two. (I just Googled it. At 30 weeks a baby should weigh about 2.5lbs.) He looked like a doll… something that wasn’t big enough to ever have been alive. The mom was gently washing his tiny hands… his chest… his legs. She even said, “I have to get behind these little ears…” He had a large bandage wrapped around his stomach. I’m still not quite sure what that was for or from, but I would guess from what Kathy told me it had something to do with his intestines.

Just seeing the parents from behind, I thought they were a lot younger than they were. They were in their early thirties, but at first glance, I thought the mom was younger, early 20’s. Once I finally was able to see them, I saw the same grief on their faces that I saw with the first family. The dad was drained and the mom was too. He would put his arm around her and just sob. Hilary, very calmly and softly started to talk about all the same things… Did they know what funeral they wanted to use… Did they belong to a church… Had their pastor been called… They did have a funeral home. They did belong to a church. The pastor hadn’t been called yet, but the grandma got on that quickly. I think she was happy to have something that she could do. After the mom finished washing the baby, Hilary asked the family if they wanted to help get the baby’s hand and foot prints. The dad helped Hilary with that; he had a difficult time keeping himself together. Hilary asked me if I wanted to do the clay moldings. I said yes, I could help her with that. I took out one packet of clay and separated into two pieces. I had a little wooden dowel rod and I rolled out those two pieces into little patties. I did the same with a second packet of clay. Four pieces. Two hands. Two feet. She said that she would do one hand and then I could do the other. She did his right hand and moved out of the way so I could get to him. I took the clay and pressed it against his tiny right foot. He had long fingers and toes. I’m sure he would have been tall like his dad. I did the left foot and then did the left hand, holding it up slightly so Kathy could get a picture of his little hand. After I put the clay moldings into their keepsake box, Kathy asked the mom and dad if they wanted to get a picture of them holding his little feet so they could remember how tiny he was. The dad gently picked up his feet and the mom placed her hands around the dads. Their heads were close to each other, touching, bending over their precious baby boy. The flash from the camera highlighted their tears, both of which were clinging on to the ends of their noses. My heart broke.

After a few more photos for the family, Hilary helped the mom dress the baby in a onesie that the family had for him. It was way too big for him and was light blue with multicolored stars on it. He got a hat, a bracelet with a teeny tiny cross on it and a light blue crocheted blanket. Once he was dressed, we stepped out of the room to give the mom and dad a few minutes to be with the baby by themselves. While we were in the hallway, we started talking to the grandma. She was still so emotional, understandably so. However, I had no idea why she was SO upset.

It turns out, that when baby Grant started to take a turn for the worse, the mom was called in and they allowed her to take him out of the incubator and hold him for the first time–the last time. The grandma was there with her daughter as Grant passed away in her daughter’s arms. Literally, seconds later, a nurse came in and told the grandma that she was needed in labor and delivery immediately… Her other daughter was there giving birth. What?! That took this to a whole different level. I felt the blood rush around my body like it was on fire. This woman went from losing a grandson to gaining a granddaughter in a matter of minutes. That’s the stuff movies are made of, not real life. In the hallway and through sobs, the grandma said, “I don’t even know how to mother that!?” One daughter is holding her live newborn and the other daughter is holding her dead baby. Now that, is a cruel, cruel irony. And, not only that, but the daughters were just down the hall from each other, just a few doors apart. Every birthday, every milestone, every memory she wouldn’t get to have with her baby boy, her sister would be having with her daughter… And I thought I had it bad.

We went back in the room to take a few more photos of the baby with mom and dad. The dad was sitting on the chair in the corner of the room and the mom was sitting on his lap. Together they held their baby… It was so far beyond gut wrenching. My heart just broke for them and it still breaks for them. That will be the only time they had with their son. Hilary did her final goodbyes with them, hugged them and told them to call her if they needed anything. As we started to leave, the mother lost it… She was looking at her baby and glanced up at us and just started sobbing. I think she was thinking the same thing I was… The same thing that I thought about when I left baby Christian… She was thinking about what happens next… That she too, will have to leave her baby there. That, thankfully, is something that I didn’t have to do. They would have had to pry that baby out of my arms.

I wonder if this will ever get easier… Not that it should, but I wonder if I’m strong enough to do this. I’m way stronger than I ever thought I was because I actually did this… and let me tell you… it’s terrifying. Scary. Frustrating. Heart breaking. I feel good knowing that because of what we did, this family will have keepsakes that they wouldn’t have otherwise had. They have tokens of their babies, which is something I was never given. I wish that someone had told me about this network and maybe then I would have had a shot at figuring all of this out ten years earlier. Don’t get me wrong, I don’t have this all figured out yet. We don’t know God’s plan. We don’t know why bad things happen to good people or why good things happen to seemingly bad people. We don’t know every story and we don’t know everyone’s personal struggle. All we can do is try to help each other get through this mess and hopefully we come out of this whirlwind helping others and being better people because of it.

After I got home from helping with Baby Christian I had this text from Hilary:

“You had a natural gift today with that family, especially the daughter. I’m so thankful you were there.”

And after Baby Grant I had this text from her:

“I think volunteering with us is a true calling for you. God gives you the strength when you need it most.”

I’m not a Godly person by any stretch of the imagination. I don’t go to church and I’m only recently learning how to pray (and trust me, I need help in that department.) I don’t know why I was always afraid of being a religious person and I don’t like the stigma that comes along with churches. I think my struggle with God will be an on going one, especially when seeing so many babies being taken from seemingly good people. I’m sure I will question Him more than ever, be more mad at him than I’ve ever been and struggle with faith more than ever before. I know he has a plan… I just wish (like everyone else), that I knew what that plan was.

I once tried to Google what lessons could be learned from having a miscarriage.

There’s nothing out there, in case you’re wondering.

It’s kinda funny if you think about it… It’s always been said we should wait until we are 12 weeks to tell anyone that we’re pregnant, “just in case.” You might miscarry. You might jinx it. God forbid people know you lost a baby. But what about these poor moms… 25 weeks and showing and you give birth. People knew you had a baby coming… Where did it go? Baby Christian died at 39 weeks… She was due to deliver and now she has to bear the shame that goes along with miscarrying. But people knew she was pregnant. People will ask her how the baby is and where he is. People will remember that baby. Why? Because she was visibly pregnant? People will grieve for them, pray for them and mourn in the loss with them… So why is miscarriage such a silent shame? Why do we need to hide it and grieve silently. Would it be easier if everyone had known? Would the shame be less?

I gotta tell you, after seeing these two babies and these two families… I don’t know which I would rather have, if I had to choose.

Baby Christian

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These last few days have been quite awesome.

awe·some

adjective \ˈ-səm\

: causing feelings of fear and wonder : causing feelings of awe

: extremely good

(http://www.merriam-webster.com/dictionary/awesome)

The day after I was supposed to give birth (see last post), was Valentine’s Day. It was also the anniversary of my grandpa’s passing 15 years ago. I knew, if there was going to be a day when I was going to be called to shadow someone for the perinatal hospice group “The Corner,” Valentine’s Day would be it. It’s the day of love and it’s the day that my favorite man of all time left us. My grandpa was the most caring, loving and sweetest man you could have met. He knew everyone; there wasn’t a place in or out of town he couldn’t go without someone knowing him. He was a kind and gentle soul and I wish everyone could have the opportunity to know someone like him. They are few and far between. I miss my grandpa daily and I’m always thinking of him. And I knew that he would have a hand in making my first experience with this perinatal group as comfortable as possible… So when I got the call that morning, I wasn’t at all surprised.

Hilary called me and said they had a baby in the Neonatal Intensive Care Units (NICU) at one of the hospitals and asked if I could meet her there. My heart started racing. I wanted to do this, but could I? The call came in around 8:30 and I had a physical therapy appointment at 9:30. I had to call and reschedule therapy for later in the day and after that was arranged, I called Hilary back and said that I could make it. I could do this. I got off the phone with her and forgot everything. I stood in my bedroom for a minute taking everything in. I was thinking, “How do I get to the hospital?” I couldn’t remember how to get to the hospital where I had been born, where I had been a hundred times, where my mom worked for over 20 years, where I had my miscarriages… I couldn’t remember. I started to panic. I sent my husband a text and then it was game on. I could do this. I finished getting ready and headed out the door. I’m not sure how I got to the hospital. I was praying to God, my grandpa, my babies and my Aunt to help me get through this and to help me help this family. I blindly arrived at the hospital and when I reached the ER of the hospital, I looked at my phone. The baby had been transferred from the hospital where I was at (Hospital A), to a different hospital (Hospital B) to be back with the mother. The mother had had the baby at Hospital B at 4:30 that morning. They transferred the baby to Hospital A because they have the best NICU in the area. Once the baby had passed on, they transferred the baby back to Hospital B. Hilary apologized asked me if I could go to Hospital B. I said yes. She sent another text apologizing again saying that this had never happened before and that she would be to the second hospital soon. I took a deep breath and headed in the direction of the other hospital. I was thankful that my first demise wasn’t at Hospital A. It was too close to home with memories of me being in the ER with my miscarriages, and since the meeting spot was supposed to be the ER, it would have been very difficult. I was thankful that I was taken in that direction to remember my little ones, though.

As I drove to the other Hospital B (which was about 20 minutes away), I took the back roads that I knew well, but hadn’t been on in ages. I went past my middle school, my grade school, my grandparents old house (a house I loved and spent tons of time at), even my preschool. And actually, before I arrived at Hospital A, I had passed my high school first. I don’t know why I found this amazing, but I felt so comforted by seeing all these places. I chronologically went back in time. All the buildings that I spent years in, all the places that I grew up. They lead me to this moment… and by having to go from Hospital A to Hospital B, I had to drive past them all. If I had gone straight to Hospital B, I wouldn’t have seen any of these places. This was a huge sense of comfort. My grandpa was with me on this journey. He sent me to Hospital A on purpose so that I would have a little more time to collect my thoughts, say more prayers and to see how far I’ve come. I wasn’t a little girl anymore. I’m so thankful for that extra 20 minutes.

I was the first one at the hospital. I was supposed to meet Hilary, the counselor, and Scott, the photographer. Once I’m done shadowing, it will just be the photographer and me. I’ll be doing everything that I’m watching Hilary say and do for these families. My job on this assignment was to just watch, take it all in, see how she did everything and just get acclimated to how they did things. Hilary arrived about five minutes after I did and she started to brief me on the baby and the family. The mom gave birth to the baby at Hospital B at 4:30 that morning (it was 9:30 by this time). The mom tried to deliver vaginally but the baby was too large… He was 12.5 lbs. His heart rate starting dropping and the hospital didn’t immediately take her for a c-section. When she was finally able to push him out (after they cut her and after he had no heart beat), they were able to resuscitate him. They air lifted him to Hospital A to the NICU. He died very shortly after arriving to the hospital.

When we arrived to see the family, the baby was still at Hospital A and we were still waiting on the coroner to bring the baby to Hospital B. The family was Hispanic and didn’t speak any English. We had to have a translator, which I think helped me process everything a little easier also. Hilary would talk to the mom and dad, saying how sorry she was and that she knew this wasn’t how they expected their day would go. The translator would then repeat what Hilary had said and the parents would respond. I think because we needed a translator, it made it easier on me. I couldn’t tell what the mom was saying, which would have been more heartbreaking for me. Obviously I didn’t have to understand what she was saying to see the heartbreak in her eyes and hear it in her voice. It was devastating. The father… I will never forget the look in his eyes. He was beyond devastated. He cried but tried to keep it together as best as he could. Their two other children were also there. The daughter was about 10 and the son was probably around 8. The kids were adorable and they were able to speak English well.

Before the baby arrived in the room, discussions on funeral homes and whether or not the family would donate the baby’s body for tissue. Hilary also discussed what we would do when the baby got there (after they had a little time with him). She told them how we would take hand and foot prints for them, as well as take molds of the hands and feet. We would also dress the baby (which, Hilary had to call her friend to quickly go buy an outfit for this little guy… The outfit that she brought with her was for a 0-3 month old baby; she knew it wouldn’t fit) and take as many photos as they wanted. The baby, Christian Isidoro, arrived about an hour after we did. When the nurse brought him in, she warned the mom that the baby was a lot darker when she had last seen him. She handed the mom the baby and the family came together at the bed and just sobbed. It was heart wrenching. The baby was big… a big, perfect baby. His complexion was a purplish brown… I don’t know if that was from the pressure being put on his head from the delivery or if this was rigamortis. He had big chubby checks and a full head of bright black hair. I’ll never forget his perfect lips and nose. He was perfect.

After about 15 minutes, Hilary asked if she could hold the baby and take it’s foot and hand prints. We have small keepsake boxes that we give the families. Each family would normally get an outfit for the baby, a bracelet or necklace for the baby, a bracelet for the mom, hat, booties, and a small blanket for the baby. They can get the foot prints and hand prints on the outside of the box, as well as having them on a piece of paper to keep inside the box. The molds get taken and put into the box as well. Hilary started by taking the molding clay out of the packaging and had the kids help her take the prints. They held the clay while Hilary pushed his toes and hands into the clay. She then took the hand prints and foot prints of the baby. During this entire time, Scott was taking photographs of this process for the family. When that was done, we were still waiting on the outfit for the baby, so Hilary asked if I wanted to help pose the baby for photos. I hesitated for a split second and then said yes. What I did was minimal… I moved the baby so that Scott could take better pictures of the baby’s hand and I pushed his little knees together to get a cute shot of the his feet. Because we didn’t have the outfit for the baby, there were only so many photos we could take until we had that. I then asked the brother if he wanted to have some pictures taken with his baby brother. He said yes. He laid his head next to his brother’s and touched his little hand. Scott took several photos of him and then his sister took her turn next to her brother. The kids just sobbed and sobbed… It was gut wrenching. After the sister sat up, I asked if she wanted to carry her baby brother to her mom. She said yes. I took the baby, wrapped the blanket all the way around him, and picked him up. He. Was. Heavy. Much heavier than I expected. I handed him to the sister and told her to be very careful and that her brother was very heavy. She had no problem bringing the baby to her mom.

Because we were still waiting for the outfit for the baby, Hilary asked if they wanted to have a priest come and bless the baby. They said yes, we put the call in for that. In the mean time, Hilary asked if she could pray with the family. Via the interpreter, Hilary prayed with the family. And I almost lost it. I started to head out the door and thought I would make too much noise, so I started to quietly pace and tune her out. Could I do that? Could I pray to God with other people? I can barely pray to God when I’m alone. How does she know what to say? The family sobbed and I was thankful for the breaks when the translator had to repeat the prayer in Spanish. I needed that time to calm myself down. A few moments later, the priest arrived and I stepped out of the room. I knew, I could not handle that again. I needed the break to collect myself before I completely lost it. From the hallway I could hear the mom’s sobs… She was crying so hard. Out of the corner of my eye, I saw five nurses and two people (male and female), both in suits approaching. I assumed they would be going past me, but when one of the nurses started to go into the room, I stopped her and told her the priest just arrived and they were doing a blessing. I asked if they could please wait until after that was done before heading in. I surprised myself by standing up for this family and giving them a little more time when the blessing was going on. I have no idea where I got the strength to tell these 7 people to please not go in the room.

The nurses scattered and the two suits stayed to talk to me. They wanted to know who I was and if I was with the family. I explained who I was with and what we did. I was talking to two high profile hospital executives and I thought they were there to console the family. I’m sure that’s why they were there on the surface, but I later realized they were there because they feared a lawsuit. I was a little slow on the uptake. They went into the room when the priest came out. They were in there only a minute, and told the family how sorry they were for their loss. When I mentioned to Hilary how I asked them to wait outside the room during the blessing, she said, “Thank you for being an advocate for the family.” They needed that time, and the family didn’t need them coming in at that moment.

Hilary’s friend showed up with an outfit for baby Christian. It was a six month outfit and it was blue with navy airplanes on it. Hilary had the mom hold the baby and had the sister and brother help get his little arms and legs into the outfit. It fit him perfectly. Scott took more photos of the family and it was getting time for us to leave the family (we had been there about 3.5 hours). Because they were donating the baby’s body for the tissue, the mom wanted to know how long she had with her baby and how long it would be until the baby would be laid to rest. The baby needed to be taken by at least 5:00 Pm because the tissue had to be harvested within 12 hours. We couldn’t get an answer as to how long until he would be laid to rest from there. After making sure we had one last family photo with all five of them in it, Hilary gave all of the family members a hug and told them again how sorry she was for their loss. Walking out of that room, knowing that eventually the mom was going to have to give her baby to someone and leave that hospital without him, was the hardest part of the whole experience.

I held it together the whole time, surprising myself. Whatever emotions I was going through, this family was going through it tenfold. Hilary told me that I would never forget this baby because he was my first and because he was such a big boy; he was the biggest baby that she had ever had and she’s been doing this for years. I remember thinking that I would never forget any moment of this entire day, but I also knew I wouldn’t forget any baby that I ever encountered through this process.

I talked to my husband that night about everything. The nights that followed were hard. I kept running the day through my mind and all I could see was his little face. I told my husband that I wish I could tell this family that they should file a malpractice suit… That they have rights that they probably don’t know about. I was tempted to contact a malpractice attorney, give them this couple’s name and number and tell him to call them and just ask about their recent delivery. I labored (no pun intended) over what to do… what was the right thing to do? I told my husband that maybe they shouldn’t go through a malpractice suit because they wouldn’t emotionally be able to handle it. What was the right thing to do? How do I be an advocate for this family? That’s what I was supposed to be, an advocate. What would I want if I were in their situation. Wouldn’t I want to know? Wouldn’t I want someone to tell me? My husband had a wonderful response… He said, “She would want him to be at rest.” And he was right. All that mom wanted was for her baby to be laid to rest. My job here wasn’t to go calling lawyers and get them involved in some huge lawsuit. My job was to comfort the family. And I hope in some small way I did.

I don’t like that this has to happen, but I do like the fact that I was strong enough to do it. I’m glad that my first baby in this hospice program was a big, healthy baby. I’m grateful for the way everything happened on this encounter. I believe having to go to two hospitals happened for a reason. I believe I got this big baby for the simple fact that if I saw a 15 week baby first, I probably wouldn’t be able to handle it. I definitely wouldn’t have been able to handle it. Small things… like the room number being 490, a number significant to me, as well as the fact that everything was slowed down via translation… It all helped me help this family. And, in turn, it will give me the strength to be able to help many other families.