Our Daughter's Day

I will forewarn you, this is going to be a lengthy post. I really write this more for myself and Brad than for anyone, though I know those of you who follow this blog regularly, or even irregularly, may like to hear what I have to say. It's taken me some time to complete this post, longer than any other, as I fight off tears and emotions along the way. It's good for me though, kind of a form of therapy I suppose.

I'd like to tell you about the day my daughter was born, the day she went back to be with God.

Many of you have followed our story from the beginning, or maybe picked up somewhere along the way. I won't belabor the roller coaster we've been living the past several months, I think it's well documented. In short, we, like many young families, were looking forward to adding another munchkin to our home. Our pregnancy with Gavin was a beautiful, medically uneventful experience. And Gavin turned out to be the best kid in the world, so who won't want to repeat that? But my pregnancy with Grace was very different. It was absolutely, 100% a beautiful pregnancy that I in no way regret or wish I could change. In fact, physically, I felt very much the same as I did when pregnant with Gavin. I’m one of the lucky moms who didn’t have to deal with many of the typical pregnancy symptoms. I had two days of nausea/vomiting with Grace, none with Gavin, if that gives you a sense for how “easy” being pregnant was for me. But my pregnancy with Grace wasn't medically uneventful like it was with Gavin. God had different plans for our child.

We knew that the odds were against us that Grace would be born healthy or even born alive at all. We lived with this reality every day for about 17 weeks (we found out on a 15 week routine ultrasound). It's a heavy cross to bear, much heavier than any I’ve ever carried, but we tried to carry it with grace. We were realistic about the likely outcome the entire pregnancy, but as is human nature, wanted to hold on to that small glimmer of hope that she would make it. That someday we would drop her off at ballet lessons, take her shopping for her prom dress, walk her down the aisle to get married (to a man who would be heavily scrutinized to earn our approval), be grandparents to her children. We wanted so badly to experience all of these phases of life with her.

So, I spent five weeks in the hospital being closely monitored. This was the most difficult thing I had ever done - I was there fighting for one child, while my other child's mother was taken away from home. Really, it was probably more difficult on Brad, as he worked to keep our house functioning all the while taking multiple trips to visit me. As difficult as every slowly passing minute/day/week was, I must say, I wouldn't change this. I needed to be there for Grace. I needed to know that I did everything possible for her.

Monday, May 23 was a typical day for me in the hospital - 4:00am vitals, 5:00am visit from the lab, 6:00am visit from the resident, 7:45am visit from Dr. B, fetal monitoring and vitals throughout the day, lots of time in bed or sitting in a chair, a visit from friends that evening for a game night. Really, not any different than the preceding days. Everything was medically status quo for Grace and me. At about 10pm, I noticed my back was aching, maybe a little more than normal. Back pain was a common ailment, given the strains of bed rest and the not-so-comfy hospital bed. During my monitoring, I just couldn't get comfortable. I chalked it up to just the same old back pain I'd had for five weeks. Around 11pm, my nurse Marsha (one of my favorites), came to take me off the monitor. All looked good, Grace's heart rate looked great and no contractions were showing up.

I mentioned to Marsha that my back seemed to be bothering me more than normal. I told her I thought it might just be from sitting in the bed and that maybe getting into bed for the night and lying down would help. So, off to bed for night. No, wait, not off to bed for the night. This pain was intensifying and seemed to now be coming in a rhythmic pattern. It was just like the pain I had when I was in labor with Gavin, though it was setting in MUCH more quickly. I called Marsha to let her know that something just wasn't right. And I instinctively called Brad, with a gut feeling that "this was it".

I won’t go into the details of my labor. It was intense and scary. Brad and I were incredibly nervous. I’ll save these memories for myself.

2:51am, Grace was born. I was able to see the neonatalogist, neonatal nurse practitioner and nurse work on her to my left side. Brad was over there as well watching from a distance. SHE WAS PINK, yes, yes, yes! She cried a little and made fussing noises. Oh my goodness, she cried! She has lungs. They worked on her for 5-10 minutes in the operating room (maybe it was longer or shorter, my sense of time was gone), wrapped her up, brought her to me for a quick hello kiss and then she was off to the NICU. She was breathing room air. I laid there with Brad while my surgery was completed and was then taken to a recovery room. I was shaking uncontrollably. Brad wasn't able to go to the NICU quite yet. We were on pins and needles waiting.

Dr. Winslow, Grace’s neonatologist, came to my recovery room and gave us an update. Grace was stable on a ventilator and seemed to be doing okay. He mentioned that he could tell when he ventilated her that her lungs were small and a bit stiff. One lung was collapsed but it was easily fixed and back up and functioning. He was optimistic. She weighed 2 pounds 15 ounces. Because of the low amniotic fluid, she didn't have full extension of her arms and legs, but we were told that could likely easily be fixed with a little physical therapy. And that, as we were told by Dr. B, she had feet that were clubbed, due to the low fluid. Easily fixable. Really, the least of our concerns.

Dr. Winslow provided a brief update to my mom and Brad's mom, who had arrived a little earlier and were in the waiting room.

I was transferred back to my room, my residence for the past five weeks. Marsha was there and was so happy that Grace was doing okay. Another update from the neonatologist - Grace was down from 100% oxygen to 30% oxygen on the ventilator. Her carbon dioxide levels were a little higher than he wanted, but they were working to adjust everything. Things were looking good. Brad was able to go see Grace now! Thank goodness! And our moms took turns going with Brad. He brought back photos for me. She was BEAUTIFUL! A full head of dark hair and her skin was a beautiful pink tone. She looked like me when I was born. She was alive!

I had to wait several more hours before they would get me out of bed for the first time and let me venture down to the NICU. I couldn't wait, though I was very tired and trying to rest a little. My dad arrived and was able to go with Brad to meet Grace. I was able to sit up in bed and start pumping. Breastfeeding was hands down one of my favorite mommy duties with Gavin and I was so looking forward to this experience with Grace. It would be different at first, given she would be tube fed until she was old enough to transition. That didn't matter. I wanted her to have the best nutrition. And I was a pumping pro, given I worked full time and pumped countless times for Gavin's first 13 months of life.

Noonish - I was finally able to get up for the first time. Surprisingly, it wasn't that painful, though the "goodies" added to the epidural were helping with my pain. I got into a wheelchair and off we went to see my daughter! We got to the NICU only to find out that Grace was being worked on by the neonatologist and team - I can't remember exactly what the nurse told us, but it sounded like something had gone slightly wrong and they were working to fix it. I wouldn't get to meet Grace quite yet. Back to my room.

Dr. Winslow came with another update at about 1:45pm. Because each update in the morning was better than the previous update, we expected the same for this visit. But it was much different. It's really quite a blur what exactly he said. Her oxygen saturation was low and she wasn't responding to the interventions they were doing. She was not stable. He said that he knew from our earlier discussion (when I was 27 weeks gestation) that our wish was that if Grace was not responding to his interventions, we wanted to be able to hold and spend time with her uninhibited by medical intervention. We had a decision to make. My heart sank. Tears flooded my eyes. He wouldn't be saying this if he could "fix" her. He went on to say that we needed to get to the NICU now.

We went to see her, for me it was the first time. Brad had been in several times to show her off to her grandparents. The mood in the NICU was very somber. Nurses had tears in their eyes. I was wheeled up but couldn't see her well in her incubator. They opened up her incubator. She was so beautiful, so incredibly beautiful. Screw the wheelchair, I was going to stand. We touched her and talked with her, kissed her. I told her I loved her countless times. I told her not to be scared, but God knows I was. She opened her eyes, her tiny little eyes. She was moving a bit and would slightly grasp my finger. Her tiny little fingers and toes were so beautiful. Brad made phone calls to other family who arrived. We had Grace baptized. My brother Tim was there to serve as her Godfather.

My parents arrived with Gavin. We weren't sure what to expect, given he's too little to really understand what was going on. He might come in and be a typical toddler and want to wonder around looking at all of the interesting things in the NICU, uninterested in Grace and what was going on. But he didn't. By now, I was sitting in a tall chair. Gavin came to sit on my lap. This was the most precious moment of the day. He sat on my lap for a good 15 minutes looking at Grace, touching her so gently, talking about her. "Baby sweeping (sleeping)" - he kept repeating this in his sweet little voice. He pointed out her body parts - "hands", "feet", "knee", "belly", "hair". He was so calm, calmer than I've ever seen him. He noticed everyone around him crying, "MaeMe, crying" "momma, crying", etc. He knew something sad was going on. I talked with him about Grace and that she was going to be going to heaven soon. God was going to take care of her. That God loved children. And that she would be watching down on us from heaven. I told him not to be scared.

We were able to get a good number of photos, both of our own and some from the hospital's photographer. One regret, we didn’t have our “nice” camera, only the small pocket camera. I really wish we had had the better one. But I can’t change this.

The whole time we were there sitting with Grace, we were not rushed. We were given as much time as we needed with her. I have no idea how long we sat with her, again, time was a blur. It really was a very peaceful time. That is what we wanted if it were to come to this. So many times, death is viewed as a very morbid, painful experience. It was not this way at all.

After spending time with Grace on the ventilator and other devices, it was time to hold her. Holding her meant we were making the most difficult decision of our lives…to end medical intervention. But we wanted her passing to be peaceful, for her to be swaddled in love. Not to leave this world in an incubator.

The staff in the NICU arranged for us to have a private room where we would spend our final time with Grace. The photographer was there again to photograph us holding and loving Grace. While maybe morbid to some, I will cherish these photos forever. Brad and I had time with Grace alone. We loved on her, held her close, talked with her. It was just beautiful. Our family was then able to come in and hold Grace, talk with her. It was so very peaceful. But Mark, Brad’s dad, wasn’t able to be there. He was confined to his bed at Lacks. We desperately wanted him to meet his granddaughter. I asked Shirley if she thought that Mark would feel comfortable meeting Grace if, by chance, they would allow us to make a trip to Lacks. That is just what we did. Gosh, the staff in the NICU were wonderful. Not once were we told “no, we can’t accommodate you”. They had already broken the rules and allowed more than two visitors to come see Grace. Now we were asking to take our daughter all the way over to Lacks. My mom went to ask the staff if this would be okay. And they didn’t give any sign that it wouldn’t, instead, instantly responded “yes, we can arrange for that.”

So, off we went to Lacks escorted by my nurse and Grace’s NICU nurse. This was one of the most memorable moments of the day. Grace would get to meet her grandpa. Special beyond words. Mark was so thankful that we brought her to meet him. He held her and had his time with her. It was so special. I will NEVER forget this.

After visiting with Mark, we headed back to my room to spend a little more time with Gavin, my parents, brothers and my sister-in-law Karen. Shortly after they left, Dr. Winslow arrived and pronounced that Grace had passed away – 6:02pm. In all reality, she likely passed peacefully some time before this in our arms. Only God knows the exact moment. Regardless, it doesn’t matter when it happened, just that it happened while surrounded in love. And that it was so peaceful and memorable.

My best friend Elizabeth was able to come to meet Grace and help us give her a bath. We dressed her and then Brad and I had more time alone with her, never rushed to give her up. We read her a bedtime story, “Guess How Much I Love You”, one of my all time favorites and a favorite of Gavin’s. Our time with her throughout the whole day was so special. I am so grateful that we had her, even for just a brief time. She left our arms around 10pm.

Brad stayed the night with me in the hospital. And fortunately, my very compassionate doctors, with tears in their eyes, “broke” the rules and allowed me to be discharged Wednesday afternoon. Both they and I knew that I needed to be at home with my family. That my recovery would be best there. It was very nice to go home, I hadn’t been there in five long weeks. There is something about being with the ones you love that brings healing.

We entered into a very busy few days, planning Grace’s funeral and burial. We met with our priest and the spiritual coordinator at Saint Mary’s the morning before I was discharged. We had a unique request for Grace’s funeral. Given Mark would not be able to leave Lacks for an off-site service, would it be possible to have the service in the chapel at Lacks? It was imperative that he be there. With a little “sting pulling”, it was arranged. It had never been done before. But, then, these unique circumstances had probably never presented before.

We met with the funeral home and cemetery to plan everything. It all seems very surreal – who thinks that at the age of 30 you will be planning a funeral for your child. Questions to answer that you never imagined you’d have to address. One important thing to us was that we assure that someday, Brad and I would be able to join Grace in the cemetery. I’m in great comfort knowing that we’ve arranged for this, though it seems strange to be buying plots at a cemetery in our 30’s. We will all be reunited one day in heaven. And our physical bodies, as well, here on Earth.

On Saturday morning, surrounded by our immediate family, we laid our little girl to rest. It was a beautiful service. We were asked if we would like to help place dirt over Grace’s casket as she was being buried. Brad and I and many in our family placed a handful of dirt. And Gavin, too. Then a man arrived with a shovel to begin burying her. I looked at him and he had tears streaming down his face. He does this job every day, yet is brought to tears by the sight of that tiny little casket. So touching. But the most memorable moment of the day, that I will never forget, came as Gavin, who as I’ve blogged previously loves construction and dirt, went to help him carry shovels full of dirt over to Grace. I told him that the dirt would keep Grace safe in the ground. It was so sweet and is something I look forward to telling him as we talk with him about his sister in the future. That photo is etched into my mind. A tiny little two year old burying his sister. I never would have thought I would be experiencing this.

Brad and I are now working to design our gravestone. Again, something I never in a million years would have thought I’d be doing a week before my 30^th birthday. We’re working to make it so very special. In a way, I’m taking great pride in this work. I’m not able to mother my daughter any longer, but in a way I am. We’re making sure her physical home is just perfect. I have lots of ideas for ways to make it special. We went to visit her today after church. The temptation to visit every day, ten times a day, is intense. I wish I could put up a tent and just live there so that she is not alone. We’re going back tomorrow for a Memorial Day mass and another visit. I’m not sure how I’m going to be able to stay away.

Aside from the busyness of the past few days, we’re working to heal as well. Gosh, I love my husband so dearly. I am so blessed to have married him, someone who is so willing and open to talking through our thoughts and feelings. Never worried that the other will judge us. We are each others best therapist. While some couples would be pulled apart through an experience like this, Brad and I are drawn closer together. But we know we likely can’t handle this on our own. We learned of a support group at Spectrum for parents of newborns who have passed away. We’re going to check it out, hoping to find others who can lend their support. And hopefully with time, we, too, will be able to help others in our situation. The grievance nurse at my doctor’s office did caution us about the support group, saying that at times, couples find that they take on others’ burdens along with their own. I want to be cautious that we don’t spiral downward while participating with the group, saddened by not just our own experience, but that of others as well.

I’m not sure that we’ll ever “recover” fully from this. And we’ve been told that people around us may expect that we are healed sooner than we really are. It will certainly take time to heal. We are forever changed. I lost it today at church during one of the songs, “You Are Mine”. Just couldn’t hold back my tears and emotions. I think I will have a lot of these moments.

But we’re having good moments as well. Thank goodness for Gavin, he really keeps us going. He is just so darn funny, you can’t do anything but smile and giggle together. He is our blessing through all of this. And it is fun to see him at home now, uninhibited by the hospital environment. He is having a transition, though. Maybe a bit of anxiety, thinking that I am leaving again. He has been very emotional when I leave the room. And he frequently will check to make sure that I’m around. Definitely more clingy that prior to me leaving for five weeks. I’m hoping with the coming weeks this will fade away. While it is so sweet to be loved, I worry that this whole experience has affected him more than we know, more than he can express at such a young age.

So, we continue to pray for strength. And we certainly appreciate your continued thoughts, prayers and support. It has been flowing so steadily…thank you all! We wouldn’t be able to face the days without you keeping us going. I’m astonished each and every day at the outreach, the small, simple things that you do for us and for Grace’s memory. We are so blessed to have you all. Thank you!

Okay, this is the end. You made it. You get bonus points if you made it all the way to the end of this post! I'll be posting some photos of Grace in the coming days/weeks. A friend of a friend is working to professionally edit them for us. She is a beautiful little girl, and I can't wait to show her off!