It’s been quite a while, so I thought I’d get on & do an update. Many of you follow us in that crazy Facebook land, but some steer clear of there, so here we go.
Natalie is finally stable after quite a scary bout with pneumonia & a lung infection. She is still heavily sedated and on a paralytic, but she’s much better than she was. She’s finally doing well enough that I felt comfortable coming back home and getting back to work. (A huge thank you to MDU, by the way, for all of their support and understanding through all of this). I’ll head back tonight to spend the weekend.
We’re meeting with the doctors tomorrow to discuss when we can get Natalie back on the transplant list. The surgeon in Minneapolis doesn’t seem to think he should perform the surgery unless she’s off of the breathing tube, and we need to find out why. They’ve spoken with Boston (the doctors there, not the entire city, that would take a while), and they would be fine with doing the transplant there. We certainly would prefer to stay in Minneapolis, but we’ll obviously go to Boston if need be. We’re concerned with waiting to re-list her, as she may miss an opportunity for the right heart, and there is always the chance she could get sick again, and that chance goes up the longer we wait. So, we’ll have a lot to think about and pray about this weekend.
We also need to say a huge thank you to Barb, Heidi’s mom, for staying out in Minneapolis. She’s been out there for quite a while now, and has put her home life on hold as well to be with us. It’s reassuring for me to know that Heidi isn’t alone while all of this is going on, as I have to try to balance work & being out there.
On a lighter note, Heidi’s dad and I were able to attend the Vikings game last Friday. I’ll put a couple pics below. Also, Heidi and I will be catching the other Vikings home pre-season game tomorrow night. It’s nice to be able to watch the next Super Bowl champs play in person in their new temporary home. Outdoor football is awesome. Cassel, Jennings, and Patterson looked really good, as did the defense. Bridgewater made some rookie mistakes, but he still looked solid. Ponder looked like, well, Ponder…unfortunately.
We had really good seats. This pic was taken right from our seat.
As hard days have turned into hard weeks, we continue to ask you to pray for Natalie. She has been intubated and on the ventilator now for almost three weeks. During this time we have struggled to keep her fluid balance stable where she can have decreased fluid and in turn a decreased workload for her heart and lungs. It’s been a very trying time for all of us. Brad has been here most of the time as well as my mom and dad. We sure miss our little girls big blue eyes and all her pretty teeth when she smiles.
I am not sure what all to say here today, but please continue to pray for her. She needs God healing right now.
Sorry it’s been so long since we’ve updated, but there hasn’t been much to report.
Yesterday was a difficult day, no, it sucked. Well, the first half of the day did, the second half of the day was decompression followed by coma/sleep.
Things happened very quickly. Natalie was happy on Sunday, eating corn on the cob and hanging out at the pool with friends. She started getting sick that night, and progressively got worse throughout the evening. Heidi brought Natalie to the hospital on Monday because she wasn’t feeling well at all. She hasn’t been sleeping (maybe 2-3 hours a day total, naps included), and has been uncomfortable and miserable. They first admitted her to the recovery floor, but later moved her to ICU. After many tests & observation, they concluded that her heart function is decreasing more rapidly than they expected. After further testing, they found that the heart was not doing enough to keep her liver and kidneys healthy, and they were starting to experience the beginnings of failure. Her heart was working so hard to make her lungs work that it didn’t have enough left to give her liver and kidneys what they need to function. You could see it by looking at Natalie, she was extremely puffy from fluid and was extremely uncomfortable. She gained almost four pounds in 36 hours, which was all fluid.
The solution they thought was best was to intubate (put in a breathing tube) so that her heart wouldn’t have to work to make her lungs work, then it would be able to give her liver and kidneys what they need to function properly. Dr. Amedori had talked about this on Wednesday, and they began discussing it as a team. I flew out on Thursday.
They discussed it with us on Friday morning, and we could tell that there was some apprehension among her surgical team. We’ve been through some major surgeries and decisions, but we knew this one was different. The intubation carried with it some very major risks because of her lowered heart function. They weren’t sure that her heart would be able to tolerate the sedation. If it didn’t, the only option was to put her on the heart/lung bypass machine (ECMO), but the chances of her surviving that would have been slim. They had the surgical team for the bypass machine waiting outside the room in case they were needed.
So, we had to make the decision of whether to proceed with the intubation or not. If not, we would have had to just hope that they could make her heart function with medication long enough for a heart to come so she could have a transplant, which was highly unlikely to be successful. At this point, her liver was too sick to accept a heart until it healed. It was the hardest decision we’ve made yet, and in the end, we decided to go ahead with the intubation.
After all the stress, tears, praying, and worrying; the intubation took about 10 minutes and she pulled through like a champ. We could tell that even many on the surgical team were amazed that it went as well as it did. Praise God.
Her liver function numbers were looking better last night already, and they’re looking even better this morning. We hope they continue to fall, as they still aren’t low enough for them to perform her transplant, but they’re trending in the right direction. We’re hoping that those liver function numbers improve so that she’ll be able to have her transplant when a heart comes available. We’re not out of the woods yet, but we’re in a much better spot than we were 24 hours ago.
These top 3 pictures are from Sunday at Mark & Micki’s house. Fun times.
This is Thursday evening, you can see how puffy she is.
Right before the intubation on Friday afternoon.
Right after the intubation
We want to make sure to say a special thanks to family that spent the day with us yesterday. We owe more than we could ever repay to Paul, Barb, Steve, and Nancy. It was more helpful than any of them could know to have them here to pray with us and help us through this decsion. Steve and Nancy have allowed Heidi & Natalie to stay with them while we’re in Minneapolis (and me when I come out on the weekends), and Nancy spent most of the day with us here yesterday and Steve came by as well. Paul and Barb drove all night from Billings, and into the lovely rush hour Minneapolis traffic to be here with us yesterday and be with us through this. Thank you also to Nadine for being here throughout this trip, and also to Mark & Micki. We have more friends and family on the way today. We’re very thankful to have family and friends to help us through all of this. It’s a little more than we can endure on our own. Mostly, we thank God for being with us and with Natalie. Without our faith, there is no way we’d be able to do it. He has given us comfort, strength, and everything we need to endure this storm. We pray it is over soon and that Natalie can have a happy childhood and life.
Well, as you are probably aware our lives have been a little crazy over the past few months, but we are happy to tell you that we are turning the page to a new chapter. I am not sure exactly which chapter we are on right now, but nonetheless, a new one has begun.
I have had so many people tell me to write things down, because when this is all done your could write a book. You really can’t make this up if your tried. You have to live it to tell about it.
So there we sat. Finally after hashing everything out with the insurance company about flying us to Minneapolis we were on our way. We sat in the back of the ambulance, at the airport, when the medic asked to see my drivers license because there was a problem with the one he sent in. It was expired. I had just renewed it when I got married, less that three years ago, so I didn’t think to renew it before going to Boston. TSA let us fly there, no problem and no questions even asked. They strip search you if you carry formula for your infant, but I guess an expired license is okay. The pilot came to the ambulance and said that they couldn’t take us because my license was expired. The tears immediately began to fall. I had spent the day packing and running errands to get ready to leave Boston only to turn around and go right back where we came from. The funny thing in all this is that if I would have had a library card with my name on it, we could have flown. I guess a library is considered a government agency and they would have issued a government card. I didn’t have a library card with me, are you kidding me. That’s all it would have taken to get to Minneapolis that night… Moral of the story, always carry your library card with you. Never leave home without it.
Brad was able to overnight my social security card and they used that and my Sam’s club card to allow me to board the plane (the medical flight plane, not commercial). Second moral of the story; thank goodness that Sam’s puts a 1/4 by1/4 inch picture on the back of your membership card. You may need to use it as a photo id someday.
We did eventually make it to Minneapolis on Friday, April 11 and it felt so good. Over the weekend, we got to visit with Brad and a lot of doctors who stopped to see Natalie and joke about my drivers license. It is quite the conversation starter and like I said, you can’t make this stuff up. Brad flew home on Sunday and the week began. We knew it would be a lot of test and procedures for Natalie as we went forward with the evaluation for the heart transplant.
Natalie has been such a good girl through this whole thing. She handles things much better than I do most days. Test after test and doctor after doctor! She is amazing. Grumpy sometimes, but amazing. We had a few rough days when we first got her as she had gotten extremely dehydrated and lost a full kilo, (2.2 pounds) in about a week. We are still not sure why she started to lose fluid so quickly, but we were able to give a little more fluid and decrease her diuretics to get her stable again. She looked pretty sick there for a few days. Today she looked great.
Today we sang, danced, walked and ate. All things that we had not been doing in the past 2 months. It was the first real glimpse of Natalie that I have seen and it felt so good to see her again.
After all her tests, another trip to the cath lab (I think that makes 10 now), a CT scan and another PICC line rewire, we got the good news from the team.
We have officially listed Natalie for a heart transplant!!!! I feel happy, sad, scared, mad, nervous and hopeful all at one time. Believe me this is the last thing that Brad and I thought we would be doing in our lifetime.
It hasn’t been without tears, questions to God and complete breaks downs. You just wonder why these little babies must endure such hard trials at such an early age. Boston has a program called beads of the heart. There is a bead for every major event that your child has gone through, from admission to transplant. Natalie has 46 beads on her chain. That is a lot of events. Holidays in the hospital, listing for transplant and I have the bead to add when she gets her new heart. I pray each night that God will bring Natalie health and healing. I never thought that it might be through receiving a new heart.
Please continue to pray for Natalie. She has a long way to go still. Natalie has been listed as a 1A which is the highest level and the most urgent for needing a heart. She will start accruing time on the list now and we have to wait for a match in size and blood type to become available. We pray that a family is brave enough to consider donating a heart for Natalie so that she may live and play many more days.
I will try to update you as we wait here in Minneapolis. I have a computer right in our room which makes it much easier. I will have to find a way to add some photos of her. She is looking more like a toddler these days.
Close your eyes and click your heels together three times and then say there’s no place like home! Little did I know that when I used to watch the Wizard of Oz, this phrase would mean what is does to me today. This stay in Boston has turned into way more than I ever would have imagined
January 25th was a long time ago and so much has happened. Brad has kept you updated as much as he can, and I am so thankful for that. So through it all, the surgery, the flu, the pneumonia, the UTI, broken broviak, the PICC line placement, the recurring fevers, fluid restrictions, not sleeping for 8 days and getting 6 teeth; Natalie has been a champ. Of course she is not smiling and playing like she used to but she is doing the best that she can. She has a great fan club here in Boston. Nurses and doctors love her despite her hesitance to let them get to close (she has a large personal bubble). She does let them listen to her 10 times a day, but she has her limits.
Definitely the game all changed when Dr. del Nido said, “if an organ came available tomorrow, I would take it.” He has been the most optimistic this whole time for wanting to take every opportunity to keep her own heart. Dr. Marshall has also been a big supporter of intervention versus transplant, but we see now that is not an option for Natalie. Once we heard that news, we quickly started putting things in place to get transferred back to Minneapolis where we have more support & family, to prepare for a heart transplant. I have been here now for one month by myself and it is so hard. Finding time to sleep is like finding gold in a mountain stream. You just can’t find it. There is no privacy and no boundaries for visitors some days for either Natalie or me. I never thought of myself as “private”, as those of you who know me know that I tend to over-share often and inappropriately, but I need privacy too. I am just ready to come home, or at least get closer to home where we can feel more comfort.
We are now just waiting on the arrangements and for some insurance issue to resolve before we get to transfer. We hope that is soon, but we are realistic in knowing that sometimes these things take time. Each day right now feels like a week when you want something so bad. It’s hard to stay optimistic but we are doing our best. When we get to Minneapolis we will be so happy and actually feel like we are moving forward for Natalie. We will at least have a chance to see friends and family and we look forward to having visitors from home. We are most excited to see Brad more often. We have only been able to see him two days in the last month and that is just not enough.
Sorry that there isn’t a lot of information to share, but we wanted to share a little bit today when I had the time and energy.
A few prayer requests. We pray that Natalie’s health stays well as we wait for transplant and transport. We pray that news of transfer and insurance coverage resolves quickly, so we can get moving and get sleep for Natalie and for myself. We also pray that Brad is able to rest knowing that we are well so far away. God, please lighten our load and calm our fears. Keep us safe and focused on the goal. Keep showing us your love and grace. Sometimes we need the reminders that you are there and keeping everything moving towards your plan for our lives.
We look forward to seeing everyone, and thank you for all the support through text and email. We can’t wait to share better news with you all.
Sorry it’s been so long since we’ve updated, but we didn’t have many answers to share yet.
Over the past couple months, Natalie has recovered from her surgery, tried to wean off the medications, and battled the flu and pneumonia. There have been some successes, but also some setbacks.
Natalie was in a tough spot in January. She was in a position where her current heart anatomy wasn’t going to be able to support her. Unfortunately, her lung pressures were such that she wasn’t a candidate for transplant, either. She was at such high risk that they would not have been able to perform the surgery. Basically, we were without options.
Dr. delNido looked at the case, and came up with a surgery that he could perform. The surgery that he came up with and performed in January was a transitional surgery to get Natalie to a better spot. They were hopeful that her heart would recover and be able to function properly, and also that her lung pressures would go down. Over the past month, it has become apparent that her heart is not going to be able to support her. Fortunately, the surgery did reduce the lung pressures to where she is eligible for transplant and would be considered “low risk.”
So, it looks like we’re going to list Natalie for a heart transplant. This is obviously not the scenario we were hoping and praying for, but it’s better than what we were looking at in January. We will be able to have the transplant done in Minneapolis, so we’ll be closer to home. For now, they’ll be working on getting Natalie and Heidi out of Boston and over to Minneapolis.
Natalie hasn’t been sleeping well (or at all) since weaning off the Adavan, and she spiked a fever a couple of times. So, they transferred her back to ICU on Sunday. She just started sleeping today, so we think she’s finally over the wean.
The goal for right now is to get Natalie in a better spot so they can transfer her to Minneapolis. We think that if they can get her medications figured out, then hopefully they can transfer to Minneapolis by the end of this week or possibly next week.
Going forward, once they’re in Minneapolis, they will do some testing to make sure she’s ready for transplant. They’ll also work on getting her stabilized enough to be able to come back home while we wait for a heart to come available. Then, we’ll hopefully all be home together.
So, we wish we had better news to share, but this is where we are right now. Thank you all again for all the prayers and support throughout all of this, we are very thankful to have the family and friends we have. Heidi said to make sure to mention thank you for all the texts and messages she gets, it really helps a lot as they’re living away from home.
Heidi will give a more detailed update sometime later in the week. Thanks again, and God bless.