Saying goodbye

We said goodbye to our sweet baby Eden today. She fought so hard and was so brave during the last 8 months, but she was too sick. Jesus welcomed her into heaven today where there are no ventilators, trachs or medications. Instead she is perfectly healthy with pink blankets, green rings and soft socks. We love her more than anything in the world and did everything we could for her. Our hearts are broken and the hole that is left will never be filled. Eden will be a donor so that she can help other babies live long, healthy lives.

Scott and I will be home tomorrow afternoon. We will begin making arrangements then, please simply pray for us right now.

Eden Bryn Hedin
8-2-2010 to 3-30-2011

One week

We have been been here for one week and its been a rough one. Eden is very critical, on maximum support and completely sedated with a paralytic medication. The MD's are trying to uncover why her pulmonary hypertension appears severe sometimes but not other times. She also has had many episodes of desaturations which results in her needing to be bagged. I hate to watch her go through this and wish everyday that I could take away her pain and struggling. The transplant team and pulmonology have had many conversations about her and are still evaluating when to put her on the lung transplant list.

I met another family here whose daughter is waiting for a lung transplant, she's older than Eden and also is very sick. They are very supportive and have answered many of my questions. I pray that E (their daughter) can receive her lungs very soon and go home with her Mommy and Daddy to live a healthy, happy life.

Thank you so much for praying for Eden. She still needs so much prayer. God can do miracles and we have to keep strong in our faith to know that he will take care of her.

A I mentioned here is some additional information about organ donation:

http://www.organdonor.gov/default.asp
http://www.lifelinkfound.org/

PLEASE consider becoming a donor.

We made it... barely

I won't rehash what Scott wrote earlier this week regarding Eden's transport. But I will provide a little view from where I was. It was the most terrifying 3 1/2 hours of my life. We have seen a lot during our time in the hospital, Eden has coded, turned blue then gray many times but when we're up in the air and she's being bagged and her sats are still poor theres no where to go. I prayed the entire flight. When we finally got on the ground I felt a moment of relief until I saw her- she was gray when they were moving her from the plane to the ambulance- she was bradycardic (dropped her heartrate) and her oxygen sats were really low. The team was very worried about her when she arrived. The transport was VERY hard on her.

Texas Children's Hospital (TCH) is very different. It's a teaching hospital, so there are always new, young faces. It will take some getting used to as I am so familiar with our more "seasoned" MD's in Minneapolis. We are also in the PICU, it's loud here and there are NO accommodations for parents. On a more positive note, it is beautiful here sun, green grass, flowers, palm trees, and warmth. It is wonderful for my mental health. I usually walk the 1 mile to the hospital instead of taking a shuttle.

Eden has had her up's and down's. She was stabilizing nicely yesterday without having the paralytic, but had a very rough night. She was bagged at least 6 times and they put her back on a continuous dose of the paralytic. I hate it. The goal is to get her off the paralytic and more stabilized so that they can continue evaluating her for the lung transplant. I have met with all three of the transplant MD's and had long conversations about this entire process. They want to make sure that her lungs are not recoverable and that transplant is the only option remaining. They are very frank about survival, success rates, and long-term prognosis. It's difficult to hear sometimes, but we feel strongly in our hearts that Eden is meant to be here and she is very special and will make a major impact throughout her life. We also know that God is watching over her everyday and he loves her and will do what's best for her.

A few things: PLEASE pray for stability for Eden, a quick decision for her being put on the list, and a short wait for lungs.
Also, if you are not an organ donor PLEASE consider it for yourself and your children. I will provide more information later about organ donation.

Thank you to everyone for thinking about us, praying for us, providing meals for Scott and overall being a support system. We need it.

They’s fixin’ to head to Houston, Y’all

Yesterday was a day of bitter sweetness, Amanda and Eden flew down to Houston which is scary and exciting at the same time. I won’t get to see my wife and one of my daughters on a regular basis and Amanda won’t get to see Reagan continue to thrive at home. But this is what Eden needs, she is a very sick girl but she is fighter, she has continued to fight ever since she was a fetus. Amanda and I will do whatever it takes for our girls, forever. We said good bye to MPLS Children’s and hello to the staff at Texas Children’s. They entire day was emotional with so many of the great staff at MPLS Children’s stopping by to see Eden, Amanda and I.

Of course we had a few hiccups getting ready to go. Eden didn’t tolerate the transport vent, her saturations kept dropping, and so after about an hour for of trying the transport decided that they would have to take turns bagging her for the ENTIRE flight! The flight was “rough” but she didn't get her sats above 76%. They also had to land in Arkansas to refuel. Because they fly at a lower altitude and at a high speed they use fuel faster. Poor Amanda, I can’t even imagine her stress level. So they made it to Houston and Eden is in her room safely. Today is huge day of evaluations. Because of the stress with the flight and being bagged, we are now concerned about the stress to her heart. We are not sure of time frames but they made it and now they are in Houston where the next chapter continues.

I am at home playing single dad with Reagan. She is now 13 lbs 13.5 oz and almost on verge of rolling over.

We wanted to say a special Thank You to all of the nurses, doctors, OT’s, RT’s, HUC’s, concierges, and staff at Children’s, you all have helped get through the last 233 days. Thank you for being an integral part of keeping our girls safe and alive. Each and every one of you had a special spot in our hearts and we will never forget you. God put you on this Earth to care for sick babies and your compassion and love for our girls helped get us through many rough days.

It's official

Eden has been approved for transport to TX and evaluation in TX for a lung transplant! They will be coming to get her early this week!! TX wanted us to be crystal clear that just because she is going there does not mean that she WILL get new lungs. They will do a barrage of tests once we arrive to determine IF indeed she is a candidate for transplant. Once she is approved the waiting will begin.

Scott and I made the very difficult decision of how to make this work for our family. Scott will become a single dad and will be staying here with Reagan- she is too medically fragile to travel, she has nursing care here and her MD's who know her here. I will be with Eden in TX. He will be able to come and visit every few weeks and hopefully I will come home a few times as well.

The sooner we get to TX the better for Eden. She is completely sedated but still has episodes of dropping her heartrate and O2 levels. This is very scary because it puts her in a very unstable position. We worry every time our phone rings that we will need to rush to the hospital. And it’s heartbreaking to see her sedated when just last week she was smiling and laughing.

So as we embark on our journey to TX please pray for a few things:
• A safe and uneventful transport there.
• Her evaluation to go well with little pain or episodes.
• And that she will be approved for transplant.

Reagan Gets A Movie

Reagan is doing great at home. She is all full of smiles. She loves her Bumbo that she got from Grandma and Grandpa Considine. She is doing great sleeping about 10-12 hours a night. Nutrition came out the other day and she is now in the 50% for length, 10-15% for weight and 10% for OFC (head circumference), this is all on the premie chart. Her weight is now 13 lbs 6.5 oz.

http://www.youtube.com/user/hedinscott?feature=mhum

Some pictures since its been awhile