(Originally posted on 12/22/12)
We write this post with the heaviest hearts imaginable. The title of the post pretty much sums it up but I will start with out Tuesday appointment so you all have the whole story.
Tuesday we went in for a growth ultrasound to see how Elliot had progressed since our last visit. Everything started out pretty normal. Our sonographer was Sarah, who did the ultrasound when Elliot was diagnosed with CDH. I think we have mentioned previously that we like that the practice that we are going to allows the sonographers to tell us what is going on and what they are seeing. Sarah told us that Elliot hadn’t grown very much at all so we knew that once Doctor Wolfson came in the news wasn’t going to be good.
Dr. Wolfson came in and explained to us that Elliot hadn’t grown very much at all in the past four weeks. He told us that if this were a normal pregnancy (one without CDH) they would go ahead and deliver him in the next couple of weeks. Apparently, when babies have trouble growing inside the womb it is safe to deliver them tiny and help them begin to grow outside.
Elliot’s CDH prevents that from being an option. He told us the he was going to bring us up again at the Thursday conference all the doctors from our practice have to discuss special cases. All of the different types of doctors are present (i.e. neonatologists, perinatologists, OBGYNs, etc.) and they discuss the best course of action to take.
We left a little confused as to what this all meant for little Elliot, but we realized it wasn’t good. We were scheduled to meet with a neonatologist Thursday at Good Samaritan at 1:30.
Thursday morning one of the nurses from the practice called and asked us if we would be willing to change that appointment to 2:00 so we could meet with both a neonatologist and a perinatologist at the same time. We agreed and when we got there we actually had to wait for another hour due to an emergency that the perinatologist had to take care of.
When they sat us down we were given the bad news. Barring a miracle Elliot’s best course of action will be comfort care.
Comfort care basically means that once he is born they will clean him up and then we will get to spend his short time on earth together as a family. He won’t have to have any tubes inserted or procedures done.
The reason is simply that Elliot has failed to grow enough to be eligible for many of the necessary treatment options. If the projection holds true on his weight at birth he will be a little over two pounds and in order to receive the vital treatment options he needs to be at least 5 pounds.
His size compounded with the severity of his CDH would mean that any lifesaving measures would only cause him unnecessary pain with no real chance at success.
The doctors made it clear that if he does begin to grow we will change the plan, but there is no evidence to suggest that he will be getting much bigger.
While we always knew this was a very possible outcome, to actually hear it was tougher than we imagined. I will say this about the doctors that gave us the news: They were wonderful.
They handled it with so much grace and professionalism. It was obvious that giving this information to expecting parents was every bit as hard as one would expect. As we left the perinatologist took Casey into her arms and they cried together. She told her that she was hugging her from one mother to another.
We are still reeling a little bit. One small silver lining is that we finally have an answer. There are still a lot of unknowns, but now that we know the ultimate outcome there is a small sense of peace.
We would be remiss if we didn’t recognize the Christmas season at this time. One of the great blessings that we have is a testimony of the divinity of Jesus Christ. We know that he was born in Bethlehem and lived a perfect life, providing us with an example of righteousness and the opportunity to utilize his atoning sacrifice to one day return and live with Heavenly Father again.
As much as this news hurts, we are grateful that Elliot will be our son, now and forever, and even though we won’t be able to spend this life with him we know that in the life to come we will be reunited.
We can’t thank you all enough for the support and prayers we have received. We truly feel them and hope that you will continue to send them our way as we see this process to its completion.
We love you all very much.
Love,
Jordan, Casey and Elliot
I am SO SORRY Jordan…
We will still PRAY for your miracle but if it is meant for him to join our Cherub angels we pray you all get as much time together as possible…
(((((((( <3 ))))))))
** Make sure you contact "Now I Lay Me Down to Sleep (NILMDS)" **
https://www.nowilaymedowntosleep.org/
My heart hurts for you. Tears are streaming down my face. I will continue to pray for baby elliot. What amazing parents you are. if I can do anything please let me know.
I’m not sure if you even see these comments. I am Chris Brewster’s mom and am a professional photographer. NILMDTS (Now I lay Me Down To Sleep) is a non-profit organazation that provides professional newborn photography at the hospital at no cost to the family. “NILMDTS extends our sincerest sympathy to families who are in need of our services. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of NILMDTS. We hope the gift we provide will bring some peace and comfort during this very difficult time.” I know the founder of the organization as well as the state director. I have covered one of these before but have not gone through the certification process as I don’t think I could bear doing this regularly. NILMDTS is in dire need of more volunteers. If their services do not work or work out for you, I would be more than happy to provide it. It doesn’t it make it easier or better, but I’m glad the gospel of Jesus Christ gives you hope in the knowledge of eternal families.
Andrea Brewster
480-332-9795
[email protected]
Also, we had a NILMDTS photographer after Ben passed. I hesitated because I didn’t want to open up this intimate moment with a stranger, but I am SO SO SO happy we decided to do it. It is amazing to have such gorgeous proof that he was here.
Casey, I am Benjamin’s mom (www.justbreathebenjamin.wordpress.com). We were given similar news about a week and a half before our son was born–comfort care was the best plan for him. That was what we did, and it was the most beautifully heartbreaking experience imaginable. It is a selfless decision, and it was comforting to me to know that the only thing Benjamin ever felt in his entire life was love. He was 4 pounds, 12 ounces, and had an unbalanced translocation of chromosomes (which caused the CDH and his small size). He lived for 15 glorious minutes.
If you need to talk, let me know. I also live near you–the other side of the valley. Much love you to, your husband, and your sweet baby boy.
<3 Eva
My heart breaks for you. My God’s grace surround you and comfort you during this time. My prayers go with you, your family and your precious little one.
Our hearts are hurting for you. We pray that the time you have with sweet Elliot will be the most special moments of your life. You are amazing examples of courage and strength. I was also going to mention having a photographer there so they can stand back and capture your sweet moments to remember while you focus on that little piece of heaven in your arms. Merry Christmas. The Salisbury Family…Jack and Drew, Max, Marley, Eric and Patti.
Dear friends,
We wanted to call or text when we read this but figured this might be the best so you could read it when you wanted. Our hearts are broken. We want you to know that we will pray for a miracle but regardless of the outcome we are here. All day, every day and even in the middle of the night. To talk, or not talk or to go out for wings or to hold you and share tears. We love you three very much and are grateful of your examples of faith.
I am so sorry to hear your news. It is a lot to take in – enjoy the few precious days you have with him, feel his spirit and his love. It’s hard to understand, but in time it will make sense. What a blessing you are to Elliot for bringing him into this world to obtain the body he needs, even if it is only for a short time. I pray the Lord to be with you all. From one mom who has loved and lost a perfect child, I send my hugs and happy thoughts. God bless.
Beautifully expressed. We are so sorry you have to go through this. We pray that you will feel the love and comfort that you deserve. Please know that we pray for you daily.
Casey and Jordan,
The Lord loves each of you. He knew this would be a difficult time in your lives. Baby Elliot wanted you to be his parents and he chose you, knowing that you would be willing to do this HARD thing for him and the Savior. Know that the Savior KNOWS your pain and he also knows of the gratitude that you have knowing one day you will be joined together and enjoy the BLESSINGS of an eternal family… It is thru Christ that all things are possible, stay close to Him and He will be there in your every hour of need and comfort!
Our prayers and thoughts are with you at this time.
Love,
James,Traci and Talmage Ellis-Sherinian
My heart hurts for you. It truly does. I am so terribly sorry you’re going through this and I hope the time you have with him is amazing and blessed.
Extending the comfort of a stranger’s hug to you. I am deeply sorry and lift you up in prayer during this difficult time. May God surround you with peace and love during this time.
My heart aches for you, knowing what you are about to experience, but it also is joyous that you will be parents to a beautiful baby boy. Losing a child is such a difficult trial to endure, and there are no words available to make it better. Please know that you have an outpouring of love and prayers from many parents who support you in whatever manner we can. I lost a baby daughter nearly 20 years ago, and my life has been so much brighter because I was her mom. Much, much love to you in this happiest, and saddest, time in your lives. I will gladly make myself available to you if you want/need a shoulder to cry on, to vent, or just to share a quiet understanding moment.
Jordan you write so beautiful! I am crying as I remember a little boy on his 1st birthday and a lawn mower – I am so sorry about Elliot, but rejoice in knowing he is so perfect he only needs a body for such a short period if that is how things transpire – know that this is in Heavenly Father’s hands. Kim & I love you, Casey & Elliot. You all are in our prayers. I loved reading the beautiful posts before mine. Please take care.
Love,
Aunt Joye
My heart hurts for you two. Prayers for you from long beach. Xoxox
Enjoy your time together, at least he will not have to have any invasive treatments and will be able to pass on from your arms to the arms of our Savior. When I think of the passing of my father it was both sad and yet joyful because I knew without a doubt during his last hours here he had one foot here and the other foot on the other side of the veil. He was able to communicate to me enough for me to feel his joy, so I knew without a doubt all he had taught me was true. There is life after death, and we will be with our loved ones again. I know this to be true, I am a witness of this spiritual truth. Love you so much! You are in my prayers.
Love,
Dana
Casey,
I am so, so, so sorry for this terrible heartache that you and your husband are enduring. I am thinking about the days that lie ahead for you both and my eyes get watery and my heart just hurts for you. You will be in my prayers and thoughts. I hope the prayers and love of your friends and family will support you and lift you up during this incredibly difficult time. I am sure that you will experience kindness and love that you have never before felt. Having so many people reach out to us was one of our family’s greatest blessings after we lost Micah. May God bless you and keep you.
All my love, Tifani Johnson (Matt’s sister and Lona’s Daughter)
I am so touched by your tender love for your little son. I will be praying for him and for you. God bless you all!
With sincere love – Julie Holmgren (a friend of Nancy)
Dear Casey and Jordan, prayers, love and more prayers for both of you and your family. With love,
Terra Maughan
Jordan & Casey,
What a humbling experience to read all your posts, so beautifully written. The love you have for each other and for your baby is very evident. Thank you for letting me peek in. It occcurred to me as I read, that right now, your little guy is so excited that he gets to come to earth. I have a baby brother who died shortly after birth and our family has always felt like we needed him, to hold us all together and keep us heading to where he is. Your experience is deeply heartbreaking and yet how incredibly special at the same time. Thank you again, and I will keep you and Elliot in my prayers.
p.s. What a great ultrasound picture. He looks like a cutie.