Facing Reality

Wednesday 9/10/14 - Day 5

A couple days ago, we happened to run into our college friend, Dominic, entering the NICU. It was such a pleasant surprise. I knew that he worked at Primary's and that he was a pediatrician, but didn't know that he was, specifically, a palliative care pediatrician. We found out that Dom is part of the Rainbow Kids Palliative Care team at Primary Children's Hospital. He told us about the team, and the resources they provide. Their website describes Rainbow Kids as "a consultation service available to any child who is experiencing a life-threatening illness. The program is here to help both the child and family deal with feelings, symptoms, and concerns during a time that may be confusing and overwhelming. Our team is available to assist you with your treatment goals of care."

 

Running into Dom here felt like a hug from Heavenly Father, as if to remind us that He has not left us alone in this experience. Dom is one of the kindest, most genuine people I have ever met. He instantly brought comfort and familiarity at a time of stress and craziness. We recognized that we could benefit from his team, so set up an appointment for today.

We sat at a table across from the Rainbow Kids team consisting of a nurse practitioner, a palliative care pediatrician (Dom), a social worker, and a non-denominational spiritual leader.  They introduced themselves, then started asking us questions to get to know us and our situation better.  They asked us how we met, so we shared that fun story (have I ever shared that on my blog? Maybe a future post...) We talked about Sara's condition, and that we thought she probably wouldn't live much longer. They helped us understand what might happen, and how they could help us. We talked about different options for memory-making, and making the most of the time she has left. We talked about how things would affect our family, and our boys. We talked about how we feel the Lord has been with us, and has blessed us so much. We shared our scary experience and miracle of Rhett's near-drowning last summer. Many tears were shed. Overall, it was a great meeting. They answered a lot of questions, and helped us think through things. I'm really glad we did that.   

Afterward, we went and saw our dear Sara. They changed her from the oscillator to a more flexible ventilator that takes small breaths for her. The monitor changes color when she attempts to take a breath on her own. She only attempts a breath every once in a while. Sara's kidneys continue to struggle, they're just not profusing like they should be. As a result, her coloring continues to get worse, as does the swelling in her abdomen, pelvis, and feet. My heart hurts for her little body going through so much just to stay alive.

She was trying so hard to get her thumb in her mouth.

Still rockin' the bow.

Cute swollen toes.

Reid and I both felt like we needed to take some time to talk and pray together. We decided to go to the Ronald McDonald Family Room "Quiet Room". When we went inside, we embraced each other, and shared many tears. Without giving up hope, I have felt deep down throughout my pregnancy that we would not get to enjoy Sara on Earth for long.  I have felt a few times since she was born that same feeling. The Lord has given us both promptings and confirmations that Sara will go soon. 

We both knelt down together and Reid prayed. It was an emotion-filled prayer. I couldn't hold back the tears. I cried harder than I ever have in my life. I am so so sad that we have to say goodbye to our baby girl, and will have to miss her for the rest of this life. On the other hand, I am so happy that she will not have to suffer or go through painful procedures. I am so grateful that she was born alive, and that she will be a part of our family forever. Thankfully, through our heartache, we both feel peace that this is the Lord's will, and that He will not leave us alone in this.  

We made phone calls to our families to tell them that Sara probably won't live much longer, and that we will have her blessing tomorrow afternoon here at the hospital. They made quick plans to be here tomorrow. Reid's dad and stepmom even left right away from McCall, ID so that they could see her tonight.

We spent a lot of time with Sara afterward. I held her little hand, and kissed her sweet face. I cried a lot. I just love her so much. I can't imagine life without her. 

We let Sara's medical team know our wishes for tomorrow. They were so great. They said that whatever we wanted to have happen, they'd make happen. They offered to transfer Sara and her entourage of medical equipment to a private Family Room so we could spend the whole night with her. Her nurse just stayed stationed outside the door. They also let us break all the rules and have our boys come, and whoever else we wanted, at whatever hours we wanted. (Just yesterday, visitor restrictions at Primary's got even more strict because of the Enterovirus going around, so the boys wouldn't have been able to visit otherwise). We made a plan to allow visitors until midnight, and then they'd be welcome again at 10am. At 1pm we will go down to the beautiful outdoor Hope Garden for Sara's blessing. 

We had the grandparents bring the boys up to the hospital tonight. (Reid's mom arrived back to Orem this evening to take care of the boys, since Rachel had to go back up to school). The hospital provided us with a whole cart of food including sandwiches, cookies, and drinks. It was nice not to worry about leaving Sara to getting food. My Mom, Dad, Megan, Marilyn, and the boys came. We had them all stay in the NICU waiting room while Reid brought each boy in one at a time for us to talk to them. We knew that they would each understand at a different level, so felt that this was the best way to do it. 

Trying so hard to keep her eyes open.

We told our boys that Sara is very sick and is going to die soon. We discussed what that means, that she will go live in heaven with Heavenly Father, and not be here with us anymore. We reminded them of the happy part - that we will see her again when we die. She will always be their sister and always part of our family. When she is resurrected she will have a perfect body. Her heart will be whole and healthy. We gave each boy the opportunity to ask questions and we shared how we felt. 

The boys each reacted differently. Clark (9) took the news the hardest. He cried with us. He knows what having a baby sister means. He has been there when we've brought babies home from the hospital. He has watched them become toddlers, and siblings he can play with. He is an incredibly sweet older brother. Jack (7) didn't seem very emotional about it, kind of matter-of-fact. He sat by Sara for a bit and held her hand. Connor (5) had the sweetest sad face and puppy dog eyes. He looked worried for Sara. He gave her kisses, and talked to her. Rhett (2.5) talked to Sara in a sweet voice. I don't think he really understands what is happening.  

I'm sure a lot of this experience will be realized as they get older. It was so heartbreaking to tell the kids, and in a way, it made things more real to me too.   

Rhett talking to Sara in the Family Room.

We let the rest of the family back into the room. Everyone spent time looking at Sara, holding her tiny hands & feet, and kissing her soft head. We decided to let Clark stay a little longer after we sent the other boys home. He was visibly having a rough time with it all. He just stayed up on the high chair next to Sara's bed. He cried a lot. 

Just after midnight, Brad and Phyllis arrived at the hospital to see Sara for the first time. They each got a turn holding her. They immediately fell in love with her, and could feel her amazing spirit. It took the work of a respiratory therapist and Sara's nurse each time we changed hands, to make sure her breathing tube stayed in, and that nothing else got tangled up. The more flexible breathing tube was so much nicer. We were able to rock her and hold her closer. (We kept the lighting dim so she would open her eyes, sorry for the grainy pics!) 

Grandma Mason

Grandpa Mason

After we said goodbye to them, Reid held Sara for a long time. He sang her Twinkle Twinkle Little Star, and I Am a Child of God. Reid told Sara not to tell Rhett that he sang his bedtime songs to her.  :) My heart melted watching him be so sweet with his little girl.

Finally, I got to hold my baby girl again. I rocked her. I talked to her. She opened her eyes for me. I could tell she knew my voice. My heart is bursting with love for this sweet daughter of mine. I am going to miss her more than I can express. A steady stream of tears fell down my face as I listened to Sarah McLachlan's song "Beautiful Girl" on repeat. I sang it to Sara. It was such a sweet and spiritual experience for me. I felt Heavenly Father's love for me, and felt that He loves Sara more than I can comprehend. I'm so grateful He has given me this time with her.

After a very long, emotional day, and many hours in the rocker, my body was sore and exhausted. I knew I needed to get some rest, so I called the RT and nurse in to transfer Sara and get her situated back in her bed. Reid and I shared a twin size couch-bed, totally humorous. With Sara's monitors beeping on and off, and her nurse coming in regularly, it wasn't the most restful night. But it was worth it.