Hi all. I said I'd write more about yesterday and so here the book goes. I think it was the hardest waking up yesterday knowing that we may need to make a decision and knowing we really didn't want to but also wanting to do the best thing for our sweet girl. We got up to the hospital at 7 a.m. again to spend some time with Emma. This time though they had decided not to take her off sedation since they were going to be doing an echo on her and they wanted to keep her comfortable. It was still a sweet time with her...talking to her and telling her that we loved her so much. You could tell that she could hear us because every once in a while her eyes would blink or move even though they were still closed. The neurologist came in to talk with us about the results of the EEG. They were unchanged from the day before...there looked to be some brain damage, although they couldn't be absolutely certain that it wouldn't change and that over time it could heal. But they were pretty sure that she would have damage that would affect her the rest of her life. Well, we could deal with that...but then they came in to do the echo on her heart. Doctor after doctor came in to study the screen. Jon and I have seen enough of these tests done that even we knew what we were looking at. You could tell that her left side wasn't working at all and then you could just see all these blood clots swirling around in her heart (in her right chamber). It was almost painful to watch. After they were done her pediatric cardiologist came over to talk to us. Dr. Allison (who we like so much and trust so much) told us that there wasn't a miraculous improvement but in fact her heart had gotten much worse. They had done all that they could do. We had prayed the night before that we would have a definite answer as to what we needed to do because we knew this would be the hardest decision that we'd ever have to or want to make and we needed to know that we would never have any regrets as to what decision we made. So...we got our answer. God answered our prayer even though it wasn't what we were hoping for it was still an answer. Emmalee was being called Home. We talked to them about what was going to happen next. We really wanted to hold our baby girl before they took her off the ECMO machine, which they don't like to do since there are so many tubes and wires and the risk of them coming out is quite high. They also don't like the idea of just turning off the machine...usually they take out the caniuls that go into her main arteries which means that she would be dying on the table and we wouldn't be able to be with her since they treat that like major surgery. Well after talking to one of our nurses she told us that she was going to do all she could to let us hold Emmalee as she passed away. So we gathered all the family and she gathered some nurses and then they placed Emmalee into my arms first. What a great feeling to be able to hold your daughter! We just sat there and rocked for a bit and talked and just looked at her pretty little face. Then they help transfer her over to Jon's arms. It's amazing to see your husband be able to hold his little girl for only the second time in his life. We read to her the book we had picked out for her (which we think is her favorite!)...it's called "God Gave Us You"...it was such a special time for us and our whole family. After that we let everyone come around and give her kisses and say good-bye. Our doctor came in to talk to us and make sure we knew what was happening and what was decided. We just had this peace about letting her go. Even though we wanted to hold her more we both looked at each other and said it was time. We also didn't want to take too long because we knew those blood clots were there and we didn't want one of them to break off and go somewhere and cause her any pain...I don't know if I had mentioned it before but her little arms/hands and feet were starting to get a little purple and they said that those were probable bits of clots that had broken off and gone there...we knew we could see those and just think of all the places that they probably had gone and we couldn't see. So while Jon was holding his baby girl they turned off the machine and she was gone...gone up to her Heavenly Father who was waiting for her with open arms. I guess I didn't know that it would happen so fast but Jon felt her go right when they turned off the machine and she did squeeze both of our fingers as almost to say good-bye to us. It brings us comfort that it did happen so fast...we know that it was the machine doing all the work for her...her little heart couldn't do the work it needed to to keep her body alive. After that they took her from us and we went to the waiting room to breath a little and wait for them to sew her up and clean her up. Then they came and got us and when we walked into the room the nurse was holding her all wrapped up and she placed her in my arms. No tubes...no wires...just Emma. We sat and rocked and kissed her little face. We cried. And we thanked God for the 13 days that we got to spend with her. It was so nice to finally see her the way she was suppose to be. After Jon and I both held her we let everyone else come back in and hold her for the first and last time. It was so special. I just wish they could have held her more...she just fit so right in your arms...perfect. But we needed to let go and say good-bye...when Jon and I were done we left her in the arms of one of her favorite nurses, Lori, who then held her for us until they came to pick her up and take her to the mortuary. It was so comforting knowing that she would be held until then. We then went and packed our stuff up at the Ronald McDonald House and headed home. It was a tough day...long and oh to short all at the same time. Many tears were shed and yet we were comforted by the fact that she is in Heaven and she had her perfect body and perfect heart! And she gets to meet Jesus before we do! When we got home we went up to Valley Grove Church and decided that that's where she'll be buried. We also watched the sun go down and just thanked God for the time we got to have with Emma. Today we went and made some of her funeral arrangements at Kohl's Funeral Home in Faribault. One of my client's husband owns it and we knew he'd do a great job at taking care of our baby girl. After that we went down to Bloom and ordered her flowers...after we told them what we wanted and who it was for they told us that they couldn't let us pay for it...that they would just take care of it. I couldn't believe it! What a blessing! We then picked out her outfit and tried not to cry as I looked at all the pretty clothes that I won't be able to dress her in. I think it hit me harder today...it's not going to be easy but God will get us through. Today was the first day that I didn't get to see my baby...that was hard...I almost wanted to ask to go downstairs (or wherever she was) just to see her. I think that's the hardest part...not seeing her. She was so pretty...so cute...so perfect. And then I think about this summer and how many things we had planned already and how it's going to be different now...but we can already see how much God has blessed us. He blessed us by giving us Emmalee for 13 days...He's blessed us by giving us each other...He's blessed us by knowing that Emmalee blessed so many people in her short life, more people than we will ever know about (until we get to Heaven). We have heard time after time in this short period how lives have been touched just by our little girl. This blog alone has touched us by all the messages you guys have left for us. We said it throughout Emmalee's journey...God is good all the time and we cling to that and know it's true. We will be able to get through this with His help and we are so grateful that He gave us so many wonderful memories of Emma that we will always hold close in our hearts. Emmalee is healed now and we miss her but we know we have the assurance that we will be able to see her again and hold her again because we have a personal relationship with Jesus Christ and He promises us that we will live in Heaven with Him someday if we confess our sins and give our lives over to Him. I am so thankful for that and I am thankful for all of you who helped us pray for our little sweet girl. Thank you for all you did for us and for all the kind words you had for us. You will never know how much they truly meant. Emmalee's service will be at Trinity Evangelical Free Church in Lakeville, MN (10685 210th Street West). We will have a visitation from 2:30 - 4:30 p.m. and a service at 5 p.m. There will be refreshments from 2:30 - 4:30. And then we will have her internment at 7 p.m. down at Valley Grove Cemetery (right outside of Nerstrand). Please continue to pray for us as we face these next few days, weeks, and months ahead of us. We know they won't be easy but God is good all the time and we will get through this. This won't be the last blog update...we'll keep you up to date on what's going on and how we are doing. Thanks so much for caring about us! For those of you who would like to attend Emma's service but can't we are going to try to post clips of her service on here so be looking for that. Also they had a professional photographer come and take some pictures of Emma her last day and so when we get those we'll share some with you all. Again thank you all so much. Emma is Home and we rejoice in her healing. We love you all!
Jon, Ali and Emmalee
P.S. Make sure you all hug and kiss your kids tonight! And enjoy every minute with them!