Waiting, waiting and more waiting!!!

Hello Everyone,

It's been a long time since I have posted and I thank Brad for his dedication to posting for you all.  It's sometimes so hard to focus my energy and attention to write about everything that is going on.  Natalie is doing very well, considering that the changes they made during this surgery changed how her blood flows and how oxygen is delivered to her body.  Her blood, red and blue, now mix as needed.  It's very noticeable when she is upset or de-stats how her lips and eyes now show the blue tint that is common with heart babies. The nurses have been working very hard to keep her calm and allow her time to heal. She hates that breathing tube and you can tell how frustrated she gets with it.  It's hard to watch her struggle to settle down, but we hope that it's only for a little bit longer. We all hate the breathing tube.

Today they were able to take the nitric oxide away and she was able to tolerate it.  The nitric helps to keep the pulmonary veins open and the oxygen flowing.  We were able to transition that all to the sildenafil that she was on at home. That was a huge step. We didn't realize how big until they told us that if she wasn't able to come off it successfully they may have had to go back in for another surgery to try and correct it.   We are so relieved that  she did well.

Tonight we continue to wait for her to get more fluid off.  Once she gets the fluid off her lungs, she has  better chance of being successfully extubated.  We are not sure when that will happen, but that is one step closer. She is starting to look like herself again.

We are waiting to play catch and play on the ipad together.  She has become quite the comedian, hiding the ball from Brad under the bed and she loves to play catch.

We have come a long way since last Monday night.  That might have been one of the hardest and longest nights of our lives. I can't remember the last time that I cried that hard.  We felt hopeless and so sad for our little girl. We were afraid that we were headed home to list her for transplant or worse, just home with out options.  We were so relieved after meeting with Dr. del Nido.  We were so happy that there was something that he could do.  Amazing, the working hands of God in human form.  He is amazing and he keeps very close tabs on Natalie.  We know that she is not done with her heart journey and we are hopeful that we are now headed in the right direction.

Here are a few pictures from the week. We thank you all for your continued prayer for both Natalie and us. Your encouraging words and support help us get through it all.  God has given us peace and rest.  We couldn't wake each day with hope for Natalie without Gods unfailing Grace!  Praise the Lord!

 February 3, 2014---Sleeping Beauty

 Day One--Post Op

 Natalie's Smiles 

Sunday update: very little change

Hello everyone,

Well, like the title suggests, there isn't a whole lot of new news to share. They're keeping Natalie asleep, and that probably won't change for another day or two.

They let her wake a few times over the last few days, and she was a little too feisty. Her oxygen stats dropped, so they had to let her go back to sleep. It's not unexpected, considering the amount of fluid she still has in her body. She looks much better today, so hopefully they'll have better luck waking her tomorrow.

We're just hanging out here with her, and getting ready to enjoy the Super Bowl on this massive 10 inch hospital TV screen (Go Broncos!). We did get out a little today to see the USS Constitution (Old Ironsides), the site of the Battle of Bunker Hill, and some of the older areas of Boston.

Hopefully, tomorrow will bring more news and some more exciting updates. Thanks again for the continued thoughts and prayers, we'll update again soon.

Out of surgery

This will be fairly short, but we'll give a more detailed update later this evening.

Natalie has made it out of surgery, and she did really well. They made the adjustments to the pulmonary artery & aorta, tightened the PA bands, and took down the wall between the left & right atrium. They are going to keep the breastbone separated for now, just in case they need to loosen the PA bands. It will depend on how her oxygen saturation looks in the next couple of days. She is recovering now, and we'll be able to see her in an hour or so.

She is going to be taken to the ICU, and will remain there for several days. She will be kept asleep while her body adjusts, but we will at least be able to see her and sit in the room with her. I'm guessing she will be kept in a coma for at least four days. 

Like I said, this is pretty short. We'll update later when we get up in the room with her. I'll have Heidi update then, she's a little more wordy than I am. Thank you everyone who has been praying and thinking about Natalie and us. We're very thankful.

The plan going forward

Hi everyone,

It's been an extremely long day, but we're finally back to the room. The meeting with the surgeon went well, and it looks like we have a plan for Natalie.

As we said yesterday, her pressures were up and her current anatomy isn't going to work. They have a surgery date scheduled tomorrow, and we'll take Natalie over at 7:00 am. Dr. delNido will be doing an open-heart procedure to get the atrial pressures and her lung pressures to go down. Right now, some of the pressures are so high that she isn't even a candidate for a transplant or any other procedure. They will join the pulmonary artery and aorta in order to shunt blood and lessen the lung pressures. They will also put a band on the pulmonary artery. They will keep her in a coma for several days after the surgery in order to keep all the pressures down as her body adjusts to this new anatomy.

This will be done in order to get her to a place where we will have some options. The transplant is still an option, but obviously that would be done as a last resort. We will monitor for a few months after the surgery to see how she is adjusting, and how her heart is doing. If all is well, there is a good chance that Dr. delNido could do another procedure to make the right side of her heart do a majority of the work while keeping her left side operating and helping the right side. This would be optimal since she'd be able to keep her heart and would have a much better quality of life than she would if she has a transplant.

This was just a quick overview of what they'll be doing. Heidi and I will update as we learn more, and to let everyone know how each step along the way is going. Thank you again for the prayers, we appreciate them very much.

Mini update until tomorrow

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.

Another chapter, how many is this now?

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.

Answered prayers

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.