Thursday, April 11, 2013

HeARTfelt Goodbye

When we found out that Milo was going to die, we vowed to do all we could to be sure that the world recognized his life. One of the ways that we ensured that this happened was by having a funeral for him. We carefully planned out the event as much as we could ahead of time, with most of the details coming together the week between when the babies were born and the funeral date. We couldn't be prouder of the grace, creativity, and pure love that comprised the service. It truly was a work of art, from the music by our dear friend Mike, to the sermon by our pastor Cindy, and a letter Mark wrote to Milo. Below is the link to the audio of the funeral service. Thank you in advance for listening. Knowing that people out there are bearing witness to Milo's life heals my heart in unmeasurable ways.

In addition to the funeral celebrating Milo's life, at my shower each of the guests made a "quilt square" with a special message for Milo. We will be framing it and hanging it in our house so that we have a daily reminder of everyone who loved that baby so deeply despite never having met him. My mom did the cross stitch and she and my sister put all the squares together. Here are some photos of it so far.

Others also have shared their artistic talents in order to help us remember Milo. Our friend Gloria crocheted him this beautiful hat and blanket, which we had him photographed with on the day he was born and died. Another friend, Cassandra, had her mom make a quilt for Milo.

People often ask us how it is that we are able to bear so much heartache. I believe that part of the reason we are able to make it through is because of the ways in which we choose to celebrate and honor Milo. I also believe we are strengthened by the ways that others have acknowledged our suffering, both through their quiet support, such as simply attending his funeral, and by more creative means, such as the quilts above. These acts don't wash away the pain--nothing ever will--but they allow us to feel that Milo's life is worth attention and care and love.

On the Day You Were Born

Dearest Matilda,

The day you and Milo were born was more amazing than I could have possibly imagined. Every mother says that the day that she gave birth to her child is the best day of her life. This really is an understatement. Before telling you the story, I have to admit that many of the details are fuzzy because of the drugs I was on because of the c-section and because of the incredibly intense emotions I experienced meeting you and Milo and saying goodbye to him. I will do my best to remember as many details as possible. I will share some of the photos of the birth by Katherine Payne here to help tell the story.*

The night before you were born we went to one of my favorite restaurants in Denver--Stueben's--for our "last supper." We actually had reservations at a fancier place called Vesta but we decided to cancel because I just wasn't up for fancy food and I wanted something familiar. So after taking Porter to the kennel, we went to Stueben's. There is usually a wait but it was early so we were able to get right in. The waiter was particularly friendly, calling me "mama" the whole time. I liked that. I ordered a chocolate milkshake, a cheeseburger, and macaroni and cheese. I ate ALL my meal without apology. He asked if I was having my baby soon and I said, "I hope so."

That night and in the morning Daddy and I took care of last minute chores and made sure the house was completely ready to welcome you home. He took one last picture of me and my ginormous belly before heading out the door.
Picture by Daddy
As soon as we stepped outside, he said, "I'm hungry!" To which I replied, "What?! You didn't eat?!" I hadn't eaten either, but that was because I wasn't allowed to since I would be having the c-section. Thankfully we were leaving way ahead of time so we went to McDonalds and he got two egg McMuffins. Breakfast of champions. We called Dorotha (our doula) on the way to the hospital to let her know we were running a few minutes later than we expected (but still early). She was there already.

We arrived at the hospital and I was nervous but excited. I can't really explain in words what it was like to prepare myself emotionally for both you and your brother's birth and his death. Walking into that hospital I knew I would be facing the best and worst day of my life. One thing was for sure--I couldn't wait to see you. We made our way through the corridors, bypassing the triage area where mommies who give birth naturally get checked out to be sure they are really in labor. The nurses laughed at all our bags and said it was obvious we were there for a c-section based on how good we looked. We made it upstairs where we met Dorotha. We all chuckled when the administrative person called her "Grandma." We had to sign forms and provide information there. Everything happened very quickly, as the doctors decided to move up the surgery time that was originally scheduled for 10:30 a.m. given the nature of our complicated situation. I was not prepared for this feeling of hurriedness. I had anticipated the wait between checking in and the c-section being very long with lots of time to process what was about to happen.

After getting checked in we met our incredible nurse Jennifer who was with us the entire day. I changed into my lovely gown and Jennifer started an IV and asked questions and basically got me set to go. I had to explain to Jennifer what was going on with you and Milo. I teared up a little when I had to tell her, but I knew I couldn't break down so early. Katherine, our photographer, arrived by then and I was relieved she made it there to document all that was about to unfold. We had prepared a very detailed birth plan to try to be sure that you and Milo had the type of care we desired. Part of this included our wishes for resuscitating him and so the neonatologist came in to talk to us about that. Our OB, who I will call Dr. T., and his resident, Dr. G. also stopped by. Next, the anesthesiologist came in so we could ask her questions and talk through the birth plan. One of our wishes was for both Dorotha and Katherine to be in the operating room. Because this isn't typically allowed, we had to get permission from the anesthesiologist. Despite our desires she was adamant that the operating room was too small for all of us. Dorotha was stern and told her that having her there for support was important given all the losses we had already endured and given how emotional we were likely to be. The anesthesiologist bargained with us, saying that she was willing to let Dorotha and Katherine take turns coming in and out of the room. I agreed to this plan, not wanting to be a bothersome patient. I could tell Dorotha wished we would have fought harder.

Then it was time to go. Daddy and I walked down the hallway to the operating room.
Copyright Katherine Payne Photography
Again, the fear and excitement were in my throat. I sat down on the table and the anesthesiologist did her thing, which included inserting a needle into my spine. This really is nothing in terms of pain for someone who has had hundreds of shots going through IVF numerous times. It only hurt a little. I laid down on the table and she started pinching me to see if I could feel anything. Eventually I could not. She asked if I could move my legs and I said, "No, which is really annoying for a control freak!" We all chuckled. Daddy (with a look of sheer terror) was by my side and Dorotha and Katherine were outside looking through the door. It was time to go.

Tears then started pouring out of my eyes. There was no stopping them. Last minute preparations were happening and I just laid there waiting for what seemed like hours. The anesthesiologist asked if I was okay, "Just the anticipation of it all?" I said "yes." The floating nurse started handing me tissues but all I can remember is the tears just pouring and pouring onto the floor. Daddy and I locked eyes, silently begging you and Milo to make it to us safely. After a few minutes when things started getting intense, he asked if we could get Dorotha in the room. She was by our side in a flash. The surgery started and she narrated everything that was happening behind the curtain. Katherine took pictures through the window and the anesthesiologist asked Dr. T if this was okay. He laughed, "Well I took a shower and brushed my hair today so I think it's fine!" Lots of pulling and tugging was going on and then Dr. G. let out a loud yelp. She quickly realized this was probably a scary thing for us to hear, so she said right away, "Everything's fine! There was just A LOT of amniotic fluid." She had gotten wet when they broke your sack!

Before I knew it, we heard "It's a girl!" and "What a beautiful baby!" You made it to the world. The anesthesiologist cheered, "And she peed and pooped all over Dr. T.!" He brought you around so we could see you and you were just the most beautiful baby ever. I know everyone says that, but really, you were so incredibly cute. You then went to get checked out. Then Dr. T. pulled out Milo and said, "It's a BOY! See I knew it!" (A couple of weeks earlier he thought he saw boy, not girl parts as had been expected all along by our perinatologist). The nurses again proclaimed, "What a beautiful baby!" I breathed a small sigh of relief. Milo did it. Despite all the odds, he made it to the world alive. And not only that, he let out a very loud high pitched CRY! He cried even before you. Dr. T. brought him around to see us. He was so small but long and he had what I could tell was a cleft lip. I had been worried about how he would look since finding out he was sick. The doctors had prepared us that he might look scary given not having much amniotic fluid around him in the womb. But I can honestly say, I was not scared one bit. He truly was just a gorgeous baby. My baby. Our baby.

Copyright Katherine Payne Photography
Somehow Katherine was now in the room snapping pictures. The neonatology team went to work on Milo immediately because although he was alive, as expected his lungs were not in good shape. One of the most amazing parts of the day happened at this moment. As soon as Milo's team was working on helping him breath, your daddy seemed to come out of himself. His look of pure fear turned to one of pure determination. He turned to someone and asked, "Can I be with him?" He seemed to float up out of his chair as if he was the bravest, strongest man on Earth. He went to Milo and held his hand and said over and over again, "Daddy's here Milo, Daddy's here."
Copyright Katherine Payne Photography
One of my fears going into the day was wondering if your dad would be able to make it through the surgery because he was so very afraid of what was going to happen to not only Milo, but he worried about your safety too. But he somehow found a way to do what he needed to do. It was absolutely remarkable. My love for him in that moment and thinking about it today is endless.

As they were working on Milo I asked how you were doing and Dorotha said you were just hanging out, happy as could be.
Copyright Katherine Payne Photography
They finally brought you over and everyone was saying how beautiful you were and commenting on your adorable dimples. I finally got the moment I had been waiting for over the last five years--I held you in my arms and kissed your face. Again, the tears flooded. You held my fingers as if to say, "I finally made it mommy and I'm never letting you go."
Copyright Katherine Payne Photography

Copyright Katherine Payne Photography
The neonatologist then came over to me and said both what I wanted and did not want to hear. She gently said, "Erin, we are to the point where we need to make the decision to move Milo to the NICU or you can be with him and hold him." We had made it clear that we didn't want Milo to be incubated or to have any interventions that would simply prolong the inevitable fact that he would die. I choked out the words, "I want to hold him and be with him."
Copyright Katherine Payne Photography
So we did. They brought him to me and I held him like I held you. He was much smaller than we had expected. His eyes were little slits and he looked out at me and I imagined him saying, "Hold me forever, mama."
Copyright Katherine Payne Photography
By that time I was done being sown up. Before being wheeled out, I thanked the anesthesiologist for allowing both Katherine and Dorotha to be in the room. She just looked at me rather blankly and shook her head in acknowledgement, seemingly shocked by all that she had just witnessed.

In the recovery room we got right to work on skin-to-skin contact and breastfeeding. You latched on right away and seemed so pleased to finally be outside rather than inside my crowded belly.

Copyright Katherine Payne Photography
Copyright Katherine Payne Photography
Our nurse Jennifer and some other nurses were there to give you your shots and do whatever it is they did to make sure we were coming along okay. Dr. Stacey (our psychologist) came and was so happy to finally meet you and Milo. We all took turns holding you both.

Jennifer checked Milo's heartbeat every once in awhile. His breathing was somewhat labored the entire time he was with us. After about two and half hours, his breathing seemed barely there and then not at all. Jennifer told us that the heart still beats for a little while after breathing stops. I had been holding Milo for awhile so I wanted to be sure that daddy got more time with him, as it was clear the end was near. Around 1:30 Jennifer came to check his heart. Dr. Stacey and I held each others eyes, waiting to hear what we already knew. He was gone.

And then the most amazing thing happened. You fussed a little bit as if you knew something was going on. I said to you, "Yeah, it's sad isn't it?" Then as if I had confirmed your biggest fears, you wailed the most painful sounding cry imaginable. We all stopped and checked to make sure something wasn't poking you. There was nothing. Then Dorotha gasped for us all. It was if you knew your brother had just told you goodbye.

The remaining hours in the recovery room are a bit of a blur for me. We all continued to pass you and Milo around the room, cuddling and loving you. A pediatrician came to visit and said the most beautiful words ever to us after your check-up, "She is perfect." Daddy gave you and Milo your first baths. Katherine took hundreds of pictures of you both. Daddy and Dorotha scarfed down pizza that Dr. Stacey and our friend Sarah sent to the room. I read Milo the book, "On the Night You Were Born." Jennifer and Dorotha and another nurse made casts of Milo and your feet.
Copyright Katherine Payne Photography

Copyright Katherine Payne Photography
Eventually Daddy, me, you, and Milo moved to our regular room where we stayed for the rest of our hospital visit. On the day you were born our journey of infertility and loss both came to a close and opened up again. It was beautiful and tragic, but nonetheless lead us to you and Milo, our babies, our family.

Copyright Katherine Payne Photography

*Katherine Payne is a professional photographer who volunteers for the organization Now I Lay Me Down To Sleep. NILMDTS is a non-profit organization that provides remembrance photography to families experiencing the death of a baby. We are so grateful to Katherine for the beautiful birth photography and the NILMDTS portraiture she did for us. The hundreds of pictures she took provide us with a memory of Matilda and Milo's birth that we wouldn't have otherwise had. In honor of Milo's legacy, please consider sharing the NILMDTS website with others and making a donation.