Baby Charles

We belong to a heart group, called intermountain healing hearts. We are part of the main heart group, and the angel group. This group is amazing, and truly helps parents that have children born with heart defects. We share our experiences with the main heart group (I never really go into a lot of detail about Ryker's passing, just some of the hurdles he had to jump over while alive). In the angel group, we mourn with those that mourn, and just give each other support. I call these kids of the groups "Ryker's Buddies". He was with some of them during his short seven weeks at Primary's, and others we only know because of the group. Well, one of Ryker's "buddies", Charlie, passed away this week, very unexpectedly. From what I have been told, he was admitted to PCMC with feeding issues, and they found he was Congestive Heart Failure, and passed away quickly after going to the infant floor. He was born just a couple of weeks before Ryker, on the 4th of October. I remember seeing his little name on one of the cards over the infant beds. He had his first and second surgeries, and has spent most of his time at home (thankfully). He would have been 9 months this coming Friday. This breaks my heart. The heartache we feel for them is painful and brings back a whole range of emotions from losing Ryker. I wish that no one had to lose their precious angels, but I understand too how precious these angels are to our Heavenly Father. Please pray for Seth, Shannon, and their little girl Aubrey, Hossfield, it truly is what buoys someone to get through this and be able to get through the days. His funeral is Tuesday, but we will not be there because we are going out of town tomorrow. So please remember to pray for them. His blog is listed on the side under heart babies.

Surviving

This was on our friends' blog, and thought really interesting. We have just barely started working on food storage about 3 months ago. Try it out, really interesting!

Created by OnePlusYou

Sticky Situations

This is mike posting again for those who don't know me, usually Emily is the one who posts but I sat their in bed pondering something that has been on my mind lately and had to share it. Em and I work at the hospital where we come in contact with new people daily, as part of our day we usually visit and talk with our patients. Most see my wedding ring and start asking how long have I been married etc. Often the question is asked " How many children do you have?" This is when I usually pause. What do I say? Honestly sometimes I am not in the mood to share the whole story of losing our two angels, or feel it is just two personal. So sometimes I pretty much lie and say oh none yet or just say oh we have two. This often nags at me because I feel horrible for lying, but I mean what do you do in that situation? It is hard to have to relive those moments time and time again. So as hard as it is sometimes we have to relive those moments we have pushed into the back of our minds hopefully never to be remembered knowing that it makes us a better person and hopefully brings us closer to a person we may not really know.

Today

Six months ago today, at about this very moment, Mike and I were standing together, in Ryker's room, hearing the teeny-hoarse cry that comes from a tiny angel that has been intubated for the prior seven weeks. We cried tears of joy, knowing that Ryker was that much closer to coming home. We sat there and just watched him for about 20-30 minutes, just so grateful and peaceful. We left to go get some lunch, hurried and ate, and the came back up about 15-20 minutes later. I remember clearly standing in another heart baby's room, and a nurse telling us that they are about to re-intubate Ryker. We went in his room, and sadly they were. It was quite the let-down, and we we were assured over and over that this is common and happens a lot. Something did not seem right with me. Call it Mother's intuition, but I truly could sense something was not right. We were standing outside his room, looking through the window and staring at the monitor. I remember seeing it drop bit by bit, till I saw the number "49". I decided to go ahead then and call the Grandparents. I advised them to hurry up to PCMC, that something did not seem right. I continued to watch the numbers drop, and then it seemed that all at once the world was slipping away from me. I called the Grandparents again, this time on a cell phone (they usually do not allow cell phones on the PICU). I hastened them to hurry. It was truly then that I felt and knew that the outcome would not be what we had hoped for Ryker. I sobbed, and cried out in pain, because the thought of losing my precious baby once more was more then I could physically bear. Another Mom came and embraced me, and gave me some soft tissues. Mike and I clung to one-another. The nurse came and told us that they were not sure what was going on. They had a couple of nurses, cardiologists, attendings, fellows, and they had just called in the cardio thoracic, Dr. Hawkins. They had brought the blue crash cart, and I yelped out. They said they were just trying to ward off the demons, that they hopefully would not have to use it. Our parents got there, and we just watched everyone working on him. They asked if we wanted a private room, and we told them no, that we just wanted to stay close. They worked on him, scanned him, did everything they could to figure out what was wrong. His O2 sats were 19 then , and had been for some time. They brought the ECMO machine (heart by-pass) and Dr. Hawkins came out to talk to us. He said that they would need to put him on ECMO for him to live, but he was no sure if he would make it to be put on. Mike and I looked at each, and it was the overwhelming sense of someone speaking both to our minds that it was time to say goodbye to Ryker. We told Dr. Hawkins that we would like to bless and name him, and after we would like to stop everything they were doing so that we could just hold him in our arms till he passed. Mike, his Dad, my Dad, and my to-be brother-in-law Cody, laid their hands on Ryker, giving him and name and blessing. Mike spoke of his valiant, strong spirit, and then released home to the arms of his sister and family that were waiting on the other side for him. One of the doctors stood there, pushing the Epinephrine, while I took off all the lines and such and wrapped him in a blanket. They continued to push air into his lungs, and then once he was in Mike's and my arms, they stopped. He slipped away peacefully, surrounded by those who had loved him most on this earth. We let everyone hold him. For everyone besides Mike and I and my Mom, this was the first and last time they would hold Ryker. We just held him, and held him, till the time came to say good-bye. About 20 minutes after Ryker passed, I felt the presence of a young man come into the room and stand close to me. It was a peaceful feeling, and I at once recognized the spirit of the son I was holding in my arms. Six months now, there is still the wound. It never completely heals, although it does shrink in size with time. Once in awhile, the Band aid comes off, and it hurts, but it is not long till it put back on to continue with the healing. Ryker-we love and miss you today, and know that we look forward to reunion we will one day have. I hope that every one of the Dads, specially those of angels themselves, have wonderful Father's Day.

Brand New Nephew!

Mike and I got the call tonight, to be able to finally meet Mike's baby-sister's brand new baby. We did not know if it was a boy or girl, and the surprise was a perfect little boy! They have not picked a name, but he is beautiful-lots of hair!

Going to be tough week.

This week is a tough week, Six months ago today, Mike and I attended Stake Conference, and were fortunate enough to have Elder Cook there to preside. The youth (at an earlier session) and then the whole congregation were given an apostolic blessing. To out it simply, we were promised that if we were doing everything we could be doing to grow closer to our Father-in-Heaven (reading scriptures, family and individual prayers, etc. )we would be blessed with a miracle in our life, and that also, we would be blessed with charity and peace that we needed for whatever would happen in our lives. As Mike and I walked home, I immediately thought of Ryker, 6 weeks old and still up at Primary's. I told Mike that it was time for our miracle. Looking back, the miracle we were given was not the miracle so may prayed for, but it truly was a miraculous week. I was able to hold Ryker, Mike would say that it was a miracle that Ryker got to meet Ronnie Brewer and Paul Milshap (sorry thatI butchered the names)Ryker was peaceful & happy, and so we got a lot of really cute pictures. But most especially, we were truly faithful and really striving harder then ever to live so that we could be closer to Heavenly Father. You all know the outcome, but I think one of the greatest blessings of the day Ryker passed, was Mike and I both knowing that his time was truly at an end, and that it was time to sadly say goodbye. I do believe that Ryker's spirit spoke to us, because when Mike and I looked at each other, we both nodded, and instructed the doctors that we would give him a blessing, and then they would stop all means of keeping him alive. We also found out that Ryker was going to be a boy, one year ago today. And next Sunday, Father's Day, it marks 6 months of Ryker's passing. Mike is also going on a camp-out for Mon-Wed, so it is just going to be me and Skip. So forgive me if you are around me, I will probably put on my happy-face, and if you ask me how I am doing, I will probably just say fine. Just know that most likely it is one of my masks, but you find that after you have lost someone that you love with all your heart and soul, that the "happy" mask is sometimes a necessity for normal functioning. The good-news is that Mike and I are almost done with our nutrition class, so hopefully we will finally be able to get working fully on our "Ryker and Lilly" projects. And I will begetting more information to those of you who are willing to help out.

Miracles in our time.

Gracie Gledhill, after 76 days at Primary's, finally was able to go home on Wednesday to her family. This little girl is a modern-day miracle. Never has there been a HLHS that was on ECMO (which basically is a heart and lung by-pass machine) survive, after being on it for 12 days. She has defied all odds and is now happily home with her parents, two brothers, and sister. There has been many prayers and many fasts in Gracie's, behalf, and I am truly humbled at what a miracle this is. It is still not an easy road, but I know with all my heart that this miracle is truly a blessing from a loving Heavenly Father. Mike and I, and many other, prayed for a miracle. Our miracle for Ryker happened to be that he no longer had to suffer physically and that he would be free from the sins of this world. With a heart defect that is severe as Hypoplastic Left Heart Syndrome is, you never know for certain what the outcome will be. People ask me if it is hard for Mike and I to see these heart kiddos do well, and not feel that life is unfair. I am a firm believer that life is not fair anyway, and also, I never want anyone to feel the pain Mike and I, and our family, has experienced from losing our two angels. We rejoice that Gracie is home, but still there are feelings of wishing that going home with Ryker may have been our outcome too. But we are at peace that an all-knowing Heavenly Father does a plan.

Pictures of Ryker and Lilly

I hail from the east coast. Since moving to Utah 6 years ago, I have found that more and more, I am finding that things are done differently here. When we knew Lilly was going to pass away, my Mom's neighbor across the street, Kim, asked if she could take some family pictures of us once Lilly came. The pictures potentially may have been after Lilly passed but ended up living and so we were able to get pictures of us all together. She also asked if we wanted any pictures of the funeral. Where I grew up, I was in no way accustomed to taking pictures at funerals. But to Mike and his family, this is and was important. So we had Kim take pictures of Lilly's funeral. And then when Ryker passed away, she took some again of his funeral. These pictures are what we call the "hard" pictures, and we do not have physical copies of them. Well today, I was over my parent's old house and Kim came over and gave me the CD's of the pictures of Lilly's sweet pictures of her and us, the pictures of Lilly's funeral, and the pictures of Ryker's funeral. They are sweet to us, but very hard. I only have shared them with very few people, and I do not think I would ever share them openly on here even. I did want to share a few, and I promise that none are pictures that will shock you. They are just some of the sweet pictures that we hold dear to us. The two of Lilly are when we had family pictures taken. The one of Ryker was the last time we held Ryker on this earth.