Jan 27, 2014 | Natalie's Life
Hi everyone,
The good news is that Natalie made it through her catheter procedure today and is doing well. She’s discharged from the hospital and we’re all back at the room trying to get some rest. She REALLY needs some sleep, but other than that, she is doing fine.
The bad news is that her pressures haven’t gotten better, in fact they’ve gotten worse. This means that her current heart configuration will not work. We are meeting with her surgeon, Dr. delNido, tomorrow. We will discuss whether he thinks he can intervene surgically in order to repair her heart. If he doesn’t think he can do anything further, then we will have to come home and list her for a heart transplant.
We really won’t know much until after we meet with him, so we’ll update with more detail tomorrow evening. We just wanted to give a quick update, as we know many of our friends and family are worried and are following the situation. We’re very thankful for that, by the way.
We appreciate the continued prayers, we really do appreciate it. If you could, pray for Natalie, but also pray for wisdom for us so that we may make the correct decision for Natalie. Again, we’ll update tomorrow when we know what the final decision will be.
Jan 16, 2014 | Natalie's Life
Hello everyone. We thought we’d get an update out here for those who want to know a little more about what’s going on with Natalie. We update Facebook, but there’s only so much you can do on there.
Heidi and Natalie are on their way back from Minneapolis after a 10 day adventure. This all started on Saturday Jan. 4, when Natalie started vomiting and couldn’t keep anything down. We tried what we could, but nothing improved by Sunday. Our cardiologist told us to bring her in to the hospital, so we did that day. She stayed in the hospital in Bismarck until Thursday, and the doctor sent her via air ambulance to Minneapolis where they had more resources to get her better. They adjusted feeds, and tried several different things to get her vomiting under control, which they finally accomplished. The belief is that she probably caught some kind of virus, which was exacerbated by what she already has going on with her heart.
So, at long last, they get to come home, thankfully. It’s been a long week without them here as I drove to Minneapolis over the weekend, but had to be back for work this week.
Through all of this, it was decided by the cardiologists & surgeons that it would be better for us to go to Boston sooner, rather than waiting for our existing appointment at the end of February. We’re flying to Boston on January 25, and they’ll be doing another cath (catheter procedure where they go through the femoral artery in Natalie’s leg to go into the heart) on January 27th. What they find in the cath will dictate what happens from there. Basically, there are three possible scenarios. 1) they find that her pressures have improved and she’s doing well, and they don’t need to adjust anything. Then we could come home. 2) they feel her pressures are better, but they feel that they need to intervene surgically to further improve her heart functioning. 3) her pressures are worse or haven’t improved, and we need to list Natalie for a heart transplant.
Obviously, we’re praying for scenario 1, and we definitely don’t want it to be scenario 3. If it is scenario 2, they already have a surgery scheduled for Wednesday, January 29th. We really don’t know a lot until they perform the cath on January 27th. We will update here as the date gets closer, and when we have more information to pass along. Right now, it’s more waiting and unknowns. We pray that Natalie doesn’t need a heart transplant, but it’s still a possibility.
We want to thank everyone for the continued prayers and well wishes, we’re blessed to have the friends and family we have in our lives.
Oct 18, 2013 | Natalie's Life
Good evening!
Well, many prayers were answered today. Natalie had her catheter procedure this morning, and all of the pressures were much better than they were in June. This was much better than what the doctors had expected. Therefore, the surgery which had been scheduled for Monday is not going to take place, and we’ll be able to come home soon. They allowed Natalie to come home to the room with us tonight, and we’ll spend a day or two in Boston just in case any complications would arise from the catheter.
We’re still not done, as we’ll continue to monitor Natalie to be sure she continues to gain weight and stay healthy. If she stays on the path she’s on, then we’ll be back in Boston in a few months for another check-up. They’re still expecting some sort of surgery at some point, but they are expecting to be able to possibly modify the current anatomy. This would mean that a transplant or reversion to a single ventricle pathway is not as imminent as was the case before today.
Obviously, we’re extremely excited and grateful. God has granted the miracle we’ve been asking for. We want to be sure to thank everyone who has been praying for Natalie through this ordeal. We know there are many of you who are praying, and we are very thankful for all of you. Mostly, we want to give thanks to God, He is the one who performs miracles, and He’s shown that He still does so today. Heidi and I are both extremely grateful.
Heidi here! Answered prayers to say the least. We are so grateful that we are not staying here for surgery on Monday. We have prepared ourselves for the long haul, and although we are not in the clear by any means, we are so grateful to have passed this hurdle. Every indication from every doctor that Natalie has seen, has been to prepare for surgery. In our minds we were as ready as we could get. I have had the best four months with Natalie at home. In June we knew that we had to make some changes that God was calling us to do. That change meant stepping out in faith that God would provide a way for me to stay home with Natalie. We knew that we had to give her a chance to make this heart work. Although it’s been a huge change for all of us, it has come with so many blessings. Natalie has gained weight consistently since I have been home full time with her. We have been blessed with so many pray warriors and support.
Natalie will have to continue to gain weight and show signs that she can make this work, but for now we are just celebrating. And we are still a bit in shock; at least I am. As I have said before, I live each day in a little bit of denial of the real situation. That’s how I get through it. I am glad that this denial will be for a good reason. When doctor del Nido told us to come back in 6 months I was shocked. It almost scared me. I even asked him if that was too long and if he was sure that wasn’t too long between check ups. He assured me that Natalie is showing positive changes. Small, but positive. He believes that 6 months will be safe for her unless she starts to lose weight or fail to increase weight. My heart was so happy for her. No big visit or procedures for 6 months. AMEN.
God is so good to us. We are so blessed and grateful to have friends that have prayed us through this. We continue to need prayers and we know that this is not the end of this journey, but for now we are going to enjoy it. Right now Natalie is sucking her thumb so loud you can hear her across the room as Brad and I sit and giggle to ourselves. What a blessing she is in our lives. Amen.
Jul 31, 2013 | Natalie's Life
Not Natalie! She is not naughty, I have been. I am so sorry for not updating the blog sooner. So much has happened since we checked in with you all last.
We now have a 1 year old!!!! We celebrated Natalie’s first birthday with a lot of friends, family and RAIN!!! But the rain didn’t get us down. We shared a very special day with over 50 friends and family. It’s been a very long year, so it was extra special to have everyone help us celebrate. The week was filled with cleaning cooking and watching the extended forecast. Friday, Beautiful, Sunny and 75. Sunday, Beautiful, Sunny and 75. Saturday the big party…… Rain, rain and even more rain. The morning started out fairly nice, but by 1pm the rain had set in. Brad and my brother-in-law made the emergency run to Target for the canopy and we moved all the chairs and table under the big tree. (We hate that tree, but today it came in pretty handy) It rained all day, but we celebrated anyway. Thank you to all our friends who let their kids come and play in the rain with us. Here are a few pictures.
Getting Ready for the Big Day!
Emergency Birthday Bath!
It was getting pretty rainy outside
Huber Family
My Friend Lynette and Kinley
I would say the cupcakes were a hit
The Jahner Family and friend Andrea
Caleb Bell all the way from Vermont! He left wearing a diaper! It was a fun day for him!!!
Gail, Tait and Ellia
The Famous Water Puddle
Birthday Cake in the rain
Present from Grandma and Grandpa Sunderland
Pretty blanket from Grandma and Grandpa… I’m ONE!!!!!!
Love my Minnie Mouse Chair. My Throne!!!
My First Birthday Shirt from Great Grandma Thorson
The Cake!!!!
What is stuck to my fingers?
Yummy!!!!!!
Thank you everyone who stopped to help us Celebrate!!!!!!!!!!
Jun 14, 2013 | Natalie's Life
Hi everyone,
It’s been a while, but here we are again. Natalie had her catheter yesterday, and the news was so-so; even slightly discouraging. Dr. Marshall said that the pressures were about the same as they were when we left here in April. We were hoping they’d be better, but we’re thankful they weren’t worse.
What this means is that we wait some more. They want to give her left ventricle some more time to grow. If it does, then her pressures will come down and no more surgery will be required.
If the ventricle doesn’t grow, then we’re kinda’ back to square one. We would have two options: a transplant, or they could be revert to the single ventricle pathway, which would be a three procedure process done over a year or so. Neither option is desirable. We’ll be praying for her heart to heal over the next couple months so she can have a normal life and be done with all of this. Dr. Marshall put the chances of this happening somewhere between slim and 50-50.
We appreciate all of you who continue to pray for her and for us. Heidi and I can’t express our gratitude enough.We’ll try to be more diligent in updating this blog in order to keep you all informed on her progress. We’ll also get some pictures posted from the birthday party. It was a wet but wonderful day!
Apr 24, 2013 | Natalie's Life
If there is one thing that people can always relate to no matter where you’re from, it’s the weather. Well today it was truly sunny and 70 degrees in Boston. It was a beautiful day here. I walked to the hospital in a cool mist and the day ended with a sunny sky. Today started with another sedation and MRI for Natalie and ended with the news that we would not be staying for another surgery.
It was however, a very long day of waiting for news. Our day consisted of waiting for the MRI to get done, waiting for the echo to get done, waiting for the waitress to bring me water at breakfast and waiting to hear from the doctors about the plan for Natalie. We finally got wind of the plan at 6:00 when our nurse told us the plan for Natalie’s evening stay. “We are restarting the aspirin” was all that Brad and I needed to hear to know that there would not be a surgery tomorrow. Aspirin is a blood thinner and is usually not given within 5 days of surgery. Those five words felt like the sun coming out from behind a huge cloud. Brad and I both looked at each other, smiled and knew that Natalie would not have to endure another night of not being fed, she would not have to be taken from us and put to sleep, and she would not have to battle that always painful recovery of open heart surgery. Amen and praise God.
Now what does that all mean for Natalie? Good question. We didn’t have that answer yet. We did finally meet with the fellow and NP to get more information on next steps for Natalie. Right now the doctors don’t feel there is anything to gain by doing another open heart procedure. They have placed the stint to keep blood moving across the 2 upper chambers, that will keep the pressures lower in the left ventricle. These high pressures have contributed to a lot of the issues Nat has had. We hope that with these lower pressures she will have an increased appetite and grow better and in turn her left ventricle will continue to grow as well. We will watch over the next few months to see if that happens.
Over the next few days we will start to wean some of the medications and watch for signs of tolerance to the new pressures. Weight gain, breathing more easily and a happier baby! We are hopeful that we will all return home together by Sunday.
God has given us so many gifts and blessings through this all. Thank you to everyone who continues to pray for us and follow Natalie’s story. Her story is short but full of life and action. This kid is always on the go and she doesn’t even crawl yet. She is such a blessing and we can’t wait to write new chapters with her.
That’s all for now! We will keep you posted over the next few days and we hope to be home soon!
Recent Comments